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WONDERFUL TO SEE ALL OF YOU HERE MANY FAMILIAR FACES AND A LOT OF NEW FACES AS WELL. AS WE UNDER ITTAKE WHAT IS THE THIRD IN A SERIES OF FOUR WORKSHOPS FOCUSED ON THE PRECISION MEDICINE INITIATIVE AND THE DEVELOPMENT OF A HISTORIC NATIONAL COHORT, AND WE SEEK IN THESE GATHERINGS TODAY AND TOMORROW TO GET INPUT FROM MANY OF YOU ABOUT PARTICIPANT ISSUES THAT CAN HELP US WITH THE PROPER DESIGN OF WHAT WE WANT TO BE AN ABSOLUTELY GROUND BREAKING AND OPTIMIZED EFFORT THAT'S GOING TO CHANGE EVERYTHING. SO I'M FRANCIS COLLINS, I'M THE DIRECTOR OF NIH. I AM EXTREMELY ENTHUSIASTIC ABOUT THE POTENTIAL OF THIS INITIATIVE AND ALSO A LITTLE ANXIOUS THAT BY SEPTEMBER, WE HAVE TO HAVE A DESIGN FOR THIS FLESHED OUT AND WE HAVE A BIT OF WORK TO DO. SO THIS IS NOT UP WITH OF THOSE MEETINGS WHERE EVERYBODY KNOWS THE CONCLUSION, CAN SORT OF DO THEIR EMAIL AND NOT PAY ATTENTION. THAT'S NOT GOING TO BE THE KIND OF MEETING WE'RE GOING TO HAVE. HAD IS THIS IS A FULLY INTERACTIVE OPPORTUNITY FOR LOTS OF TALKING, LISTENING AND INTERACTING. APPRECIATE ALL OF YOU SETTING THE SIDE ATIME TO BE HERE, KNOWING THAT IN MOST INSTANCES YOU HAD LESS WARNING THAN USUAL, WERE YOU ASKED TO DROP EVERYTHING IN SUMMERTIME, THE WEEK OF THE FOURTH OF JULY NO LESS, AND SHOW UP HERE, AND WE APPRECIATE THE FACT THAT ALMOST EVERYBODY SAID, YEAH, OF COURSE, THIS IS IMPORTANT, THIS REALLY MATTER, I WANT TO BE A PART OF IT. THERE ARE PEOPLE IN THE ROOM WHO HAVE BEEN ALREADY ENGAGED IN SOME OF THE OTHER WORKSHOPS WE HAVE BEEN PUSHING FORWARD WITH GREAT INTENSITY SINCE THE PRESIDENT ANNOUNCED THE PRECISION MEDICINE INITIATIVE BACK IN JANUARY. BUT THERE ARE OTHERS WHO HAVE NOT BEEN. SO IT WOULD SEEM TO BE A GOOD IDEA TO SET THE STAGE A LITTLE BIT BY GOING THROUGH SOME OF THE BASIC IDEAS THAT LED TO THIS PROPOSAL OF HAVING SUCH A COHORT AND A BIT ABOUT WHERE WE ALREADY HAVE COME AND THEN PERHAPS SETTING THE STAGE A LITTLE BIT ABOUT WHAT THE MAJOR QUESTIONS ARE THAT I HOPE THIS GROUP CAN ADDRESSED TO AND TOMORROW. SO THAT'S MY TASK. I'M NOT GOING TO SPEAK FOR A TERRIBLY LONG TIME, BUT I DO WANT TO KIND OF SET THAT STAGE AND THEN WE'LL GET INTO SOME VERY INTERESTING PANELS THAT WILL OCCUPY MOST OF TODAY. SO THE CHALLENGES. WE HAVE TOO MANY DISEASES THAT DON'T HAVE AT THE PRESENT TIME WELL PROVEN EFFECTIVE PREVENTION STRATEGIES, WHERE DIAGNOSTICS ARE NOT OPTIMIZED AND WHERE TREATMENTS ARE EITHER NOT AVAILABLE OR YOU'RE NOT SURE WHETHER THEY WORK AS WELL AS WE WOULD WANT THEM TO. MANY OF THOSE CURRENT OPTIONS ARE DONE IN A ONE SIZE FITS ALL APPROACH BECAUSE IT'S THE BEST WE COULD DO AND SO THEY HAVE NOT CONSIDERED KEY DIFFERENCES AMONGST INDIVIDUALS. THAT'S WHAT WE REALLY MEAN WHEN WE TALK ABOUT PRECISION MEDICINE, IS IDENTIFYING THOSE INDIVIDUAL DIFFERENCES AND GENES AND LIFESTYLE AND ENVIRONMENT IN ORDER TO MAKE THE RIGHT CHOICES FOR THE PREVENTION OF DISEASE OR THE MANAGEMENT OF CHRONIC ILLNESS FOR THAT PERSON, AND THE NOT JUST FOR A GENERIC IDEA OF WHAT THAT PERSON REPRESENTS. ON TOP OF THAT, WE WOULD ALL AGREE WHO ARE INVOLVED IN RESEARCH THAT CLINICAL TRIALS ARE SLOW, THEY COST A LOT OF MONEY, THEY TAKE A LONG TIME TO GET SET UP AND ENROLLED, AND THEN OFTENTIMES YOU HAVE TO IT TEAR THEM ALL DOWN AGAIN AND WE'RE NOT TAKING FULL ADVANTAGE OF THE ABILITY TO DO THINGS MORE EFFICIENTLY. MANY OF THOSE TRIALS END UP BEING SMALL AND NARROW IN SCOPE, AND MAY BECAUSE OF EXCLUSIONS NOT REALLY REPRESENT REAL WORLD SOLUTIONS WHICH MAKES IT HARD THEN TO EXTRAPOLATE FROM THE RESULTS OF THE TRIALS TO THE CLINICAL PRACTICE. PARTICIPANTS IN CLINICAL TRIALS, SADLY, HAVE OFTEN NOT REALLY BEEN CONSIDERED AS PARTICIPANTS. THEY ARE, QUOTE, SUBJECTS, A A WORD THAT I THINK WE SHOULD BASICALLY STRIKE FROM OUR LANGUAGE, BUT IT'S STILL THERE IN VARIOUS REGULATIONS. AND WE WILL SPEND A LOT OF TIME TODAY TALKING ABOUT THE IMPORTANCE THAT PARTICIPANTS REALLY ARE PARTICIPANTS AND THEY'RE PARTNERS, THEY'RE NOT SUBJECTS. WE WON'T EVEN NECESSARILY CONSIDER THEM AS PATIENTS, BECAUSE MANY OF THEM ARE HEALTHY. RESEARCH FINDINGS FURTHERMORE TAKE A LONG TIME TO BE IMPLEMENTED INTO CLINICAL PRACTICE, SO THERE'S SOME SERIOUS PROBLEMS. I'M NOT GOING TO SAY THAT THIS COHORT IS GOING TO SOLVE ALL OF THOSE THINGS TOMORROW, BUT IT WILL, I THINK, CONTRIBUTE IN A SUBSTANTIAL WAY TO ADDRESSING EACH ONE OF THESE CHALLENGES. SO LET'S HEAR FROM SOMEBODY WHO KNOWS A LITTLE BIT ABOUT THIS. >> TONIGHT I'M LAUNCHING A NEW PRECISION MEDICINE INITIATIVE TO BRING US CLOSER TO CURING DISEASES LIKE CANCER AND DIABETES AND TO GIVE ALL OF US ACCESS TO THE PERSONALIZED INFORMATION WE NEED TO KEEP OURSELVES AND OUR FAMILIES HEALTHIER. WE CAN DO THIS. YES, WE CAN. [APPLAUSE] AND YOU KNO THE CHAMBER IS RISING TO ITS FEET. THEY DON'T DO THAT A LOT. THEY DIDN'T HAVE A LOT OF INFORMATION TO GO ON WHAT THEY WERE SUPPOSED TO CLAP FOR, BUT THEY WERE CLAPPING BECAUSE IT SOUNDS LIKE A GOOD THING. LET'S SEE WHAT WE CAN DO HERE TO HELP THE CAUSE OF PEOPLE'S H WELL, THAT WAS A FAIRLY QUICK BLURP OF A BIT OF INTENTION OF WHAT'S GOING ON. MORE INFORMATION CAME FORTH IN ANOTHER 10 DAYS, BUT I MIGHT SAY THIS IS NOT THE FIRST TIME THE WORDS "PRECISION MEDICINE" IT HAD BEEN VOICED. THERE WAS A WHOLE IOM REPORT ABOUT THAT A COUPLE OF YEARS EARLIER, AND THE IDEA OF HAVING A LONG TERM PROSPECTIVE COHORT THAT WOULD LOOK AT GENES AND ENVIRONMENT IN THE UNITED STATES HAD CERTAINLY BEEN AROUND, PROPOSED BY THIS GUY ACTUALLY IN 2004, IN A COMMENRY IN "NATURE" BASED UPON A LOT OF WORK THAT WAS DONE BY A WORKING GROUP ASSEMBLED BY THE GENOME INSTITUTE AT THE TIME. SO YOU MIGHT SAY, WELL, GOSH, WHY DIDN'T IT HAPPEN THEN? WELL, THIS LANDED WITH A THUD BECAUSE AT THE TIME, THE PRACTICALITY OF MOUNTING SUCH A COHORT WAS WAY OUT OF REACH, TO BE HONEST. SOME OF US WERE BEING A LITTLE BIT IDEALISTIC BECAUSE LOOK AT SOME OF THE STATISTICS 10 YEARS AGO, IT YOU WERE GOING TO INCLUDE GENOME SEQUENCING OF HUNDREDS OF THOUSANDS OR A MILLION OR MORE PEOPLE, THE COST WOULD HAVE BEEN PRO HEBTIVE. PROHIBITIVE. BUT LOOK AT THE PROFOUND DROP 10 YEARS LATER. AS WE'LL TALK ABOUT, THE AVAILABILITY OF SMARTPHONES AND THE SO HIGH PRESSURE CALLED MHEALTH REVOLUTION, MOBILE HEALTH APPS THAT MANY OF YOU ARE CARRYING AROUND RIGHT NOW, I HAVE BOTH MY FITBIT AND APPLE WATCH, I'M TRYING TO FIGURE OUT WHICH ONE I CAN GET RID OF BECAUSE MY WRIST IS A LITTLE OVERWEIGHTED RY RIGHT NOW, BE THOSE KINDS OF APPS WEREN'T IN PLACE 10 YEARS AGO, AND NOW WITH SMARTPHONES BEING WIDELY ACCESSIBLE AND LOTS OF WAYS TO USE THEM FOR MONITORING HEALTH, WE HAVE A REAL OPPORTUNITY TO FIGURE OUT HOW THAT HELPS. ELECTRONIC MEDICAL RECORDS, VERY FEW OF THOSE AROUND 10 YEARS AGO. NOW PERCENT OF PROVIDERS USING THEM, OVER 90%. ADMITTEDLY, WE HAVE WORK TO DO HERE TO GET THOSE TO BE ACTUALLY MEANINGFULLY USEFUL FOR RESEARCH. AND ALL OF THIS IS GOING TO BE A BIG DATA CHALLENGE, BUT COMPUTING POWER HAS COME FORWARD. SO 10 YEARS HAVE GONE BY AND WE NOW, I THINK, COULD BE SAID TO BE IN A MUCH MORE FACILE AND APPROPRIATE PLACE, AND I THINK THAT WAS A STRONG MOTIVATION BEHIND THE PRESIDENT'S DECISION TO ANNOUNCE THIS INITIATIVE AND TO SAY HE WANTS IT TO START IN FY16. THAT WOULD BE STARTING OCTOBER 1ST, HENCE THE PRESSURE UPON ALL OF US TO FIGURE OUT, OKAY, WHAT IS IT AND HOW DO WE DO IT AND WHAT IS IT REALLY GOING TO LOOK LIKE? HAROLD VARMUS AND I WROTE A PIECE FOR THE NEW ENGLAND JOURNAL THAT CAME OUT THE SAME DAY AS THE WHITE HOUSE EAST ROOM PRESENTATION OF WHAT THIS WAS ALL ABOUT, AND BY THE WAY, IF YOU'RE NOT ALREADY TRACKING IT, WE'RE TRYING TO PUT INFORMATION UP ABOUT PRECISION MEDICINE ON THIS WEBSITE AND KEEP IT UPDATED ALL THE TIME SO THAT AS THIS VERY FAST MOVING PROCESS PLAYS OUT, YOU HAVE A PLACE WHERE YOU CAN GO AND SEE SOME OF THE DOCUMENTATIONS OF WHERE WE ARE IN TERMS OF THE PLAN AND THE DESIGN. SO WHAT IS IT? THE VISION? IT'S TO BUILD A BROAD RESEARCH PROGRAM TO ENCOURAGE CREATIVE APPROACHES TO PRECISION MEDICINE, TEST THEM RIG LUSLY AND THEN USE THEM TO BUILD THE EVIDENCE BASE NEEDED TO GUIDE CLINICAL PRACTICE. THAT'S THE BROAD VISION. BUT IT HAS TWO COMPONENTS. IN THE NEAR TERM, TO APPLY THE AT THE NETS OF A MAJOR HEALTH THREAT IN THIS SPACE WITH A GREAT DEAL OF PROMISE, AND THAT IS CANCER. IN THE LONGER TERM, TO GENERATE THE KNOWLEDGE BASE NECESSARY TO DO THIS IN VIRTUALLY ALL AREAS OF HEALTH AND DISEASE. AND THAT'S WHERE THIS MILLION-PERSON COHORT KICKS IN. IN TERMS OF THE CANCER APPROACH, AND DOUG LOWY IS HERE, THE ACTING DIRECTOR OF THE NCI, HAS PUT A LOT OF TIME INTO THIS ZIPS HE STEPPED INTO THAT ROLE IN APRIL. THE IDEA HERE IS TO TAKE WHAT IS ALREADY STARTING TO HAPPEN AND SCALE IT UP IN A BIG WAY TO BE ABLE TO IDENTIFY THE DRIVERS OF MALIGNANCY AND INDIVIDUAL TUMORS FROM INDIVIDUAL PATIENTS, THEN TRY TO CONNECT THAT UP WITH OPTIMIZED TARGETED THERAPY WASTED ON THAT MOLECULAR UNDERSTANDING. SO IT'S NOT ONE SIZE FITS ALL CHEMOTHERAPY, IT'S INDIVIDUALIZED TARGETED THERAPEUTICS. NCI HAS A PROGRAM ANNOUNCED IN JUNE CALLED MATCH. THIS WILL ENABLE, MATCH, TO GROW INTO DIFFERENT AREAS INCLUDE THE NEW CANCER SUBTYPES, THERAPEUTIC TARGETS. THERE'S A WONDERFUL OPPORTUNITY FOR PARTNERSHIP WITH THE PRIVATE SECTOR HERE BECAUSE WE NEED ACCESS TO TARGETED DRUGS AND THE IDEA THAT MULTIPLE COMPANIES WOULD MAKE DRUGS AVAILABLE FOR A SINGLE TRIAL DOESN'T ALWAYS HAPPEN, BUT THEY HAVE AGREED TO DO SO HERE. WE CAN EXPAND EFFORTS ON CHILDHOOD CANCERS. TRE'S AN OPPORTUNITY TO GO BEYOND MONO THERAPY TO COMBINATION THERAPIES WHICH ARE GOING TO BE CRITICAL IN THE VIEW OF MOST OF US IF YOU'RE SERIOUS ABOUT NOT JUST REMISSIONS BUT ACTUAL CURES. AND TO UNDERSTAND AND COMBAT DRUG RESISTANCE. WHEN IT DOESN'T WORK, WHY DIDN'T IT WORK AND WHAT COULD WE LEARN ABOUT THAT IN ORDER TO IT OFFER BETTER OPPORTUNITIES. SO THIS IS A FRONT END OF THE OF THE PRECISION MEDICINE INITIATIVE WITH WHICH IS READY TO GO EXCEPT FOR THE DOLLARS, AND THE DOLLARS HAVE BP PUT FORWARD BY THE PRESIDENT, $70 MILLION FOR FY16, AND, IN FACT, THE CONGRESS SEEMS VERY FAVORABLY IP KLEINED, JUDGING BY THE APPROPRIATIONS DECISIONS THAT HAVE BEEN PUT FORWARD IN MARKUPS JUST IN THE LAST 10 DAYS. WE'RE NOT AT THIS MEETING TALKING ABOUT THE CANCER PART. THAT HAS BEEN DISCUSSED RECENTLY AS THE NATIONAL CANCER ADVISORY BOARD AND NCI PORD OF SCIENTIFIC ADVISORS ARE BUT YOU SHOULD KNOW THAT THIS IS A SIGNIFICANT COMPONENT OF WHAT WE'RE TRYING TO DO AND WE WANT TO BE SURE THAT THESE TWO PARTS ARE CONNECTED AS MUCH AS POSSIBLE, PARTICULARLY WHEN IT COMES TO ISSUES SUCH AS DATA SCIENCE. WE ARE GOING TO BE TALKING ABOUT THIS LONGER TERM EFFORT TO GENERATE A KNOWLEDGE BASE THAT CAN MOVE PRECISION MEDICINE INTO THE WHOLE RANGE OF HEALTH AND DISEASE. AND THAT IS CAN GOING TO BE BOLD INDEED, IT WILL REQUIRE A LOT OF CREATIVITY. WE WILL HOPE TO RECRUIT A LOT OF VERY SMART SCIENTISTS TO ENJOY THE OPPORTUNITY OF TAKING PART IN THIS BECAUSE THERE'S GOING TO BE A NEED FOR LOTS OF TALENT AND VISION, AND WE WANT TO TRY TO TAP IN TO A WIDE VARIETY OF IT TECHNOLOGIES AS WELL. BUT THE REAL IDEA HERE AND THE REASON FOR GATHERING US ALL AT THIS DAY AND A HALF IS THAT PARTICIPANTS WHO ARE GOING TO BE ASKED TO TAKE PART IN THIS ARE GOING TO PLAY A VERY SIGNIFICANT ROLE IN THE DESIGN, PATIENT PARTNERSHIPS, ELECTRONIC HEALTH RECORDS, AGAIN AS AN OPPORTUNITY NOW THAT WASN'T THERE 10 YEARS AGO, BUT NOW IS, TO BE ABLE TO TRACK MEDICAL EXPERIENCES, LABORATORY DATA, DRUG PRESCRIBING AND SO ON IN A FASHION THAT IS NOT GOING TO REQUIRE GOING THROUGH REAMS OF PAPER. THE ABILITY TO TAP INTO TECHNOLOGIES. AS I'VE MENTIONED, THE SO CALLED MHEALTH OPPORTUNITIES, TO UTILIZE THOSE AND TEST OUT THEIR UTILITY IN IT WAYS THAT WE HAVE NOT PREVIOUSLY RIGOROUSLY LOOKED AT. THE USE OF ALL KINDS OF GENOMIC TECHNOLOGIES WITH THE EXPECTATION THAT THE ALREADY IMPRESSIVE COST CURVES COMING DOWNWARD ARE GOING TO CONTINUE TO FALL, WE SHOULD HAVE THE OPPORTUNITY TO DO VERY EXTENSIVE GENOMIC ANALYSIS ON A MILLION PEOPLE, AND ALL OF THIS CREATING A VERY SIGNIFICANT DATA SCIENCE CHALLENGE AND OPPORTUNITY WHEN YOU PUT ALL THAT DATA TOGETHER IN A WAY THAT YOU NEED TO MINE IT AND UNDERSTAND WHAT ARE THE MOST CRITICAL OBSERVATIONS THAT YOU CAN MAKE. SO THE VISION IS, A NATIONAL RESEARCH COHORT, A HISTORIC DEVELOPMENT, OF AT LEAST A MILLION U.S. VOLUNTEERS AND I WILL CONFESS I WOULD LOVE IT IF IT WAS MORE THAN THAT, BUT LET'S START THERE. AND WHERE DO THOSE COME FROM? THERE ARE NUMEROUS EXISTING COHORTS, AND WE TALKED ABOUT THIS IN THE PREVIOUS WOR WORKSHOP IN NASHVILLE ABOUT A MONTH AGO, SUCH PLACES AS KAISER PERMANENTE, INTERMOUNTAIN, WHO AY HAVE STARTED THIS KIND OF EFFORT, ENROLLED IN SOME INSTANCES TENS OF THOUSANDS OF PEOPLE. THERE'S THE MILLION VETERANS PROGRAM OF THE VETERANS' ADMINISTRATION WHO ENROLLED 400,000 VETERANS AND ALREADY DONE GENOTYPE ANALYSIS ABOUT HALF OF THOSE. AND IT WOULD BE VERY HELPFUL, I THINK, TO ACTUALLY PUT TOGETHER THIS KIND OF COHORT BY TAKING VAPG OTAKEADVANTAGE OF THE WORK THAT'S ALREADY BEEN DONE AND MONEY THAT'S ALREADY BEEN SPENT IN A WAY THAT'S FULLY COMFORTABLE FOR THOSE PARTICIPANTS, SOME MAY WANT TO JOIN, SOME MAY WANT TO THINK ABOUT IT, BUT WE NEED TO HAVE THAT CONVERSATION. WE NEED CLEARLY TO DO OUTREACH TO UNDERREPRESENTED GROUPS. WE WANT THIS COHORT TO BE HIGHLY USEFUL FOR UNDERSTANDING HEALTH DISPARITIES, AND UNLESS WE MAKE A SPECIFIC EFFORT IN THAT REGARD, WE MAY MISS THAT OPPORTUNITY. WE'LL BE TALKING ABOUT THAT A LOT AT THIS MEETING. AND IDEALLY, WE WOULD LIKE ANY VOLUNTEER IN THE COUNTRY. MY BROTHERS ALL WANT TO TAKE PART IN THIS, NONE OF THEM HAPPY TO BE IN ANY OF THESE COHORTS AND YET THEY WOULD LIKE TO SIGN UP. EVERY TIME I TALK ABOUT THIS, SEVERAL PEOPLE COME UP TO ME AND SAY SIGN ME UP, WHERE DO I GO. I WANT TO PUT MY NAME IN. WELL, WE WOULD NOT WANT TO DISCOURAGE THAT, BUT OBVIOUSLY THE ABILITY TO DO SO IN THE ABSENCE OF SOME KIND OF MEDICAL CARE FRAMEWORK MAY BE A LITTLE CHALLENGING. WE HAVE TO FIGURE OUT HOW TO MAKE THAT WORK. PARTICIPANTS, AGAIN, ARE NOT SUBJECTS, THEY'RE PARTICIPANTS, THEY'RE PARTNERS, CENTRALLY INVOLVED IN THE DESIGN AND THE IMPLEMENTATION. IN ORDER FOR THIS TO WORK, WE HAVE TO HAVE SHARING OF DATA, GENOMIC DATA, LIFESTYLE INFORMATION, BIOLOGICAL SAMPLES AND ALL LINKED TO ELECTRONIC HEALTH RECORDS, AND I WOULD SAY ONE OF THE GREAT VALUE OF THIS PARTICULAR COHORT WOULD NOT ONLY BE YOU COULD FOLLOW THESE PEOPLE LONGITUDINALLY, BUT THEY HAVE THE OPPORTUNITY TO BE APPROACHED WITABOUT TAKING PART IN CLINICAL TRIALS OF THERAPEUTICS, DEVICES, AND THEY CAN SAY YES OR NO BUT IT PROVIDES A WONDERFUL WAY TO TRY TO DO ENROLLMENT WHICH CURRENTLY TAKES MUCH LONGER THAN IT SHOULD AND TO BUILD UPON A FRAMEWORK TO MAKE CLINICAL TRIALS HAPPEN MUCH MORE EFFICIENTLY AND COST-EFFECTIVELY. SO THIS IS PROPOSED EFFECTIVELY AS THE NEW MODEL, EMPHASIZING ENGAGED PARTICIPANTS, OPEN RESPONSIBLE DATA SHARING, WITH PRIVACY PROTECTIONS. NOW YOU CAN ALREADY SENSE A LITTLE TEPTION THERE. YOU WANT OPEN RESPONSIBLE DATA SHARING BUT YOU WANT PRIVACY PROTECTION. A LOT OF WORK HAS BEEN DONE THINKING ABOUT THAT. I'M SURE WE'LL TALK ABOUT THAT AT THIS MEETING AS WELL. SO WHAT WOULD YOU DO WITH THIS COHORT IF YOU HAD IT? IT'S A BOLD IDEA, BUT WHAT KIND OF REVELATIONS COULD COME FORWARD? ONE IS YOU MIGHT ACTUALLY -- BY HAVING A LOT OF PEOPLE WITH COMMON DISORDERS AND A LOT OF DATA ABOUT THEM, BEGIN TO REALIZE THAT THE WAY WE CLASSIFY DISEASE, WHICH IS BASED ON MOSTLY INFORMATION THAT'S DECADES OLD, IS NOT OPTIMUM. MAYBE DIABETES SHOULDN'T BE JUST TYPE 1 AND TYPE 2, MAYBE WE'VE GOT LOTS OF SUBSETS OF DIABETES THAT WE COULD RECOGNIZE AND THAT WOULD CORRELATE WITH NATURAL HISTORY AND RESPONSE TO THERAPY. MENTAL ILLNESS MAY BE PARTICULARLY AN APPROPRIATE PLACE TO LOOK AT THIS, BECAUSE OUR CLASSIFICATIONS OF MENTAL ILLNESS, I THINK WE WOULD ALL AE, ARE PRETTY SHAKY IN TERMS OF BEING SYMPTOM BASED AND BLURRY, AND THE OPPORTUNITY TO TRY TO MAKE THAT MORE PRECISE AND TO FIGURE OUT, THEREFORE, HOW THAT CORRELATES WITH THEIR THERAPEUTICS WOULD BE EXTREMELY USEFUL. PHARMACOGENOMICS, I WANT TO COME TO IN A SECOND BECAUSE I WANT TO PLAY THAT OUT AS MAYBE ONE OF THE EARLY RESULTS THAT WE COULD BE ALMOST COUNTING ON COMING FROM THIS. THE IDEA OF BEING ABLE TO USE INFORMATION ABOUT THE INDIVIDUAL, PARTICULARLY JE NE IT TICK DATA, TO CHOOSE THE RIGHT DRUG AT THE RIGHT DOSE. WE ALL KNOW THAT IT DOESN'T ALWAYS WORK IN THE GENERIC ONE SIZE FITS ALL APPROACH. CAN WE ACTUALLY USE WITH SUCH A VERY LARGE COHORT INFORMATION TO IT OBTAIN AN UNBIASED DETERMINATION OF FUTURE DISEASE RISK? AGAIN, RIGHT NOW WHAT WE HAVE IS OKAY, PU IT IT COULD BE BETTE IT BUT IT CO ULD BE BETTER IF WE HAD MORE INDIVIDUALIZED DATA AND THE ABILITY TO FOLLOW PEE PROSPECTIVELY, PLANNING IN PREVENTION IT IF WE WERE ABLE TO SAY WHO'S AT RISK FOR WHAT? UNDOUBTEDLY, WE HAVE AN OPPORTUNITY HERE ALSO BECAUSE WEAWE'RE NOT JUST STUDYING SICK PEOPLE, WE'RE STUDYING A CROSS-SECTION OF AMERICANS, MANY OF WHOM ARE HEALTHY, BUT MANY SHOULDN'T HAVE BEEN HEALTHY BASED ON THEIR GENETIC DATA. WHAT'S THEIR RESILIENCE ABOUT? THIS IS AN AREA WE WOULD LOVE TO UNDERSTAND BETTER BECAUSE IF YOU YOU BE COVER THE CAUSE, THAT TELLS YOU SOMETHING USEFUL THAT MIGHT BE EXTRAPOLATABLE TO OTHER PEOPLE TO HELP THEM STAY HEALTHY AS WELL. AND OF COURSE AN AWFULLY POWERFUL TEST BED FOR DOING A BETTER JOB, NOT JUST OF RESEARCHERS DECIDING HOW PEOPLE ARE DOING, BUT PEOPLE TELLING YOU HOW THEY'RE DOING. PATIENT-REPORTED OUT CANCOMES, IMPROVING UTILITY OF ELECTRONIC HEALTH RECORDS, EVALUATING THIS WIDE ARRAY OF MHEALTH APPLICATION, TRYING TO UNDERSTAND ENVIRONMENTAL EXPOSURES IN A LARGE POPULATION IN WAYS THAT WE NEED TO KNOW MORE ABOUT. THOSE ARE SOME OF THE POSSIBLE USES. SO HOW HAVE WE BEEN APPROACHING THIS? WE HAD THIS ADVISORY COMMITTEE TO MEET, THE ACD, WHICH IS THE PLACE WHERE WE HAVE OFTEN ASKED DISTINGUISHED LEADERS TO HELP US DESIGN OR ANSWER IMPORTANT QUESTIONS. WE HAD A WORKING GROUP, THE ADVISORY COMMITTEE THAT BASICALLY HELPED US IT DESIGN THE BRAIN INITIATIVE. THIS ONE IS FOCUSED ON THIS COHORT FORMED IN MARCH AND WORKING PRODIGIOUSLY HARD. THANK YOU ALL OF YOU WHO ARE PART OF THIS GROUP. I'LL GET THE ROSTER IN A SECOND. WE'VE ALREADY HAD HAD THIS INITIAL WORKSHOP APRIL 28, 29 HERE AT NIH IT TO LOOK AT UNIQUE SCIENTIFIC OPPORTUNITIES. THE WORKSHOP IN VANDERBILT A MONTH AGO, LOOKING AT DIGITAL HEALTH DATA, ELECTRONIC HEALTH RECORDS, HOW ARE WE GOING TO MAKE MOST OF HAD, WHAT ABOUT EXISTING COHORTS AND HOW CAN WE GLUE THEM TOGETHER. AND HERE IS THE ROSTER OF THE FOLKS INVOLVED. THE CO-CHAIRS, RICK CLIFTON, BRAY PATRICK-LAKE WHO YOU'RE REQUESTING TO HEAR FROGOING TO HEAR FROM I N A MOMENT AND KATHY HUDSON. WE'RE NOT DONE YET. HERE ARE THE MEMBERS, MANY OF WHOM YOU WILL SEE TODAY TAKING PART AS PANEL LEADERS FOR THE DISCUSSION WE'RE HAVING AND ALL OF THESE FOLKS ALSO HAVING ROLLED UP THEIR SLEEVES AND NO DOUBT SETTING ASIDE THINGS THEY WERE PLANNING TO DO THIS SUMMER IN AN ATTEMPT TO MAKE THIS HAPPEN. ALL IN THIS GROUP WITH A WIDE VARIETY OF EXPERTISE A AS YOU CAN SEE FROM THIS LIST. SO CONSIDERATIONS TO DATE, JUST TO SORT OF SAY WHERE WE ARE, BUT THERE'S STILL MANY THINGS THAT STILL NEED TO BE RESOLVED. WE WANT THIS COHORT TO BE EFFICIENT AND INCLUE SI. WE WANT TO LEVERAGE THESE EXISTING COHORTS IF WE CAN BECAUSE IT WILL ALLOW US TO MOVE FORWARD QUICKLY AND INEXPENSIVELY AND TAKE ADVANTAGE OF DATA THAT'S ALREADY BEEN COLLECTED. BUT WE WANT TO BE SURE TO INCLUDE UNDERSERVED AND UNDER CANREPRESENTEUNDERREPRESENTED GROUPS, THRO UGH THE COMMUNITY HEALTH CENTERS WHICH WE BELIEVE MIGHT BE AN IDEAL PLACE BECAUSE THEY HAVE ELECTRONIC HEALTH RECORDS AND SERVE MANY INDIVIDUALS WHO ARE UNDEUNDERREPRESENTED TRADITIONALLY IN THESE KINDS OF RESEARCH STUDIES. WE'VE HAD A DISCUSSION ALREADY ABOUT CHILDREN AND LEADING STRONGLY IN THE DIRECTION OF INCLUDING CHILDREN, ALTHOUGH THERE ARE CONSENT ISSUES THAT ARE OBVIOUS. WE WANT MILITARY MEMBERS AND VETERANS TO BE ABLE TO PARTICIPATE BUT WE DON'T WANT TO ASSUME ANYBODY WOULD BE SORT OF FOLDED INTO THIS BECAUSE THEY'RE TAKING PART IN SOME OTHER COHORT, WE WANT TO BE SURE THAT CONSENT IS OBTAINED FOR ALL AS PART OF THIS INITIATIVE SO THAT PEOPLE KNOW WHAT THEY ARE THE GETTING INTO AND WHAT THEY MIGHT GET FROM IT. THERE ARE OBVIOUSLY GOING TO BE VERY SIGNIFICANT ISSUES ABOUT THE DATA, IT HAS TO BE HIGHLY SECURE, BUT ALSO BROADLY ACCESSIBLE. AGAIN, THAT TENSION THAT WE HAVE TO TRY TO HIT CORRECTLY. AT THE MOMENT, WE'RE TALKING ABOUT A HYBRID DATA MODEL THAT IS PARTLY CENTRALIZED BUT PARTLY DISTRIBUTED. OTHER FOLKS WHO ARE HERE CAN TALK MORE ABOUT WHAT THAT MODEL LOOKS LIKE IN THE WAY THAT IT'S SHAPING UP. AGAIN, STRONG IDENTIFICATION TO TRY AND INCREASE THE RESEARCH USE AND TO MAX MIGHT INDIVIDUAL CONTROL. WE WANT THAT CONTROL, WE WANT INDIVIDUALS WHO ARE PART OF THIS TO HAVE FLEXIBILITY ABOUT HOW AND WHEN TO PARTICIPATE, TO BE MADE AWARE OF RESEARCH STUDIES THEY MIGHT WANT TO PARTICIPATE IN, BUT THERE NEEDS TO BE THIS OPEN RESPONSIBLE DATA SHARING WITH PRIVACY PROTECTIONS. THERE ARE POLICY ISSUES HERE THAT NEED ADDRESSING. IR Bs CAN POTENTIALLY AB REALLY IMPORTANT PART OF THIS, BUT AS YOU ALL KNOW, IF YOU HAVE 39 DIFFERENT IRBs, THAT DOESN'T ALWAYS PROVIDE A LOT OF ADDED VALUE SO WE WANT TO LOOK FOR THE WAYS TO DO THIS THROUGH SINGLE CENTRALIZED IRBs. THE PRIVACY STANDARDS WILL BE TALKED ABOUT AT THIS MEETING IN TERMS OF EXACTLY WHAT THEY SHOULD LOOK LIKE AND THEY NEED TO BE VERY STRONG IN A CIRCUMSTANCE WITH THIS MANY PEOPLE INVOLVED IN SHARING THEIR MEDICAL DATA. BUT WE ALSO WANT TO ENCOURAGE THIS DATA SHARING ISSUE IN CLINICAL TRIALS.GOV, WHICH IS GOING THROUGH AN INCREASED AREA OF OPENNESS. WE'LL HELP WITH THAT. WE ALSO, POLICY WISE, WOULD LIKE TO STRENGTHEN THE WAY IN WHICH INAPPROPRIATE REIDENTIFICATION OF RESEARCH PARTICIPANTS WOULD BE DISCOURAGED OR EVEN PUNISHED. SO THOSE THINGS ARE ALSO IN THE MIX HERE AS FAR AS DISCUSSIONS. JUST TO FINISH UP EAR IN TERMS OF IMAGINING THE POSSIBILITIES, I MENTIONED PHARMACOGENOMICS. I DO THINK THIS IS AN AREA WITH WHERE WE COULD POTENTIALLY GET RESULTS RELATIVELY EARLY ON WITH A LOT OF PEOPLE INVOLVED IN THEIR GENOTYPES AVAILABLE. DOWN AT THE BOTTOM THE OF THE SLIDE, THE FDA ALREADY HAS 150 OR MORE PHARMACOGENOMIC BIOMARKERS AND DRUG LABELING. THAT IS THE DRUG LABEL SAYS THERE IS A KNOWN GENETIC VARIANT THAT INFLUENCES THE DOSE THAT YOU MIGHT WANT TO GIVE UP THIS DRUG. MOST OF THAT INFORMATION IS THERE, BUT IT'S NOT BEING UTILIZED BECAUSE IT'S NOT ACCESSIBLE TO THE PHYSICIAN AT THE TIME THE PRESCRIPTION IS BEING WRITTEN. SO IF YOU HAVE, ON THE OTHER HAND, FOR A MILLION PEOPLE THAT INFORMATION HAS ALREADY BEEN OBTAINED, CAN YOU REALLY TEST YOU CAN REAL LY TEST OUT THE IDEA ABOUT WHETHER HAVING THAT RESULTS IN BETTER OUTCOMES. THERE'S A LONG LIST OF DRUGS, BLOOD THINNERS, ANTIDEPRESCIENTS, DRUGS TO TREAT HYPERLIPIDEMIA AND SO ON FOR WHICH THIS INFORMATION COULD BE REALLY QUITE USEFUL BUT IT REALLY HASN'T BEEN PUT TO THE TEST AT SCALE. IMAGINE MELISSA, WHO'S A PARTICIPANT IN THE PMI, AS SHE WEARS SO SOME VARIOUS SENSORS, SHE'S A COHORT PARTICIPANT, DIAGNOSED WITH HYPERTENSION, SHE GETS HER GENOTYPING DONE, PHARMACOGENOMIC RESULTS ARE MADE AVAILABLE TO HER BECAUSE WE WANT INFORMATION TO GO BACK TO PARTICIPANTS AS MUCH AS POSSIBLE, AND THAT ACTUALLY TURNS UP THE FACT THAT PERHAPS THE DRUG THAT SHE'S TAKING FOR HER HYPERTENSION IS NOT IDEAL, AND WITH THE CHANGE, SHE ENDS UP WITH A BETTER OUTCOME. MEANWHILE ALL THAT DATA GOES BACK IN THE COHORT DATABASE, CONTRIBUTING TO UNDERSTANDING AND IT'S PART OF OUR RESEARCH EFFORTS TO SEE DOES PHARMACOGENOMICS ACTUALLY IMPROVE OUTCOMES. JUST A VERY QUICK SNAPSHOT OF AN EXAMPLE. HERE WE ARE TODAY. JULY 1-2, AND THE GOALS HERE AND THE CONSIDERATIONS ARE THAT WE REALLY WANT TO FOCUS ON HOW PARTICIPANTS CAN BE PART OF THIS EFFORT, INCLUDING IN THE GOVERNANCE, HOW CAN WE ENSURE INCLUSION OF UNDERSERVED AND UNDERREPRESENTED POPULATIONS. WHAT KIND OF INFORMATION WILL PARTICIPANTS WANT TO RECEIVE AND HOW DO WE MAKE SURE THEY GET IT AS A BENEFIT OF BEING PART OF THIS EFFORT. AND HOW DO WE KEEP THE VOLUNTEERS ENGAGED AND ACTIVE OVER TIME SO THAT IT'S NOT JUST A ONE-TIME THING, OKAY, I SIGNED UP AND THEN FORGET ABOUT IT. BECAUSE WE WANT THIS, IF IT'S GOING TO BE SUCCESSFUL, TO EXTEND OVER MANY YEARS. THE VALUE OF THE INFORMATION WILL GROW WITH TIME, AS MORE AND MORE DATA IS COLLECTED AND MEDICAL EXPERIENCES ARE ENCOUNTERED BY THE PARTICIPANTS. SO, I GUESS THE BOTTOM LINE IS, FOR ALL OF THOSE WHO ARE CONSIDERING THIS POSSIBILITY, PARTICIPATION IS CRITICAL, BUT IT IT NEEDS TO BE REALLY SUBSTANTIVE. THE COUNTRY IS INTERESTED. YESTERDAY THERE WAS A TWITTER CHAT THAT WENT ON THAT KATHY HUDSON AND CAN D.J. PATILLE, WHITE HOUSE CHIEF SCIENCE OFFICER, AND JOSH DENNY AND A FEW OTHER PEOPLE WERE INVOLVED IN. HERE ARE THE STATISTICS. 71 MILLION IMPRESSIONS OCCURRED, MEANING PEOPLE WHO HAD TWEETED HAD FOLLOWER, YOU ADD THEM UP AND YOU GET TO 71 MILLION. YOU CAN SEE WHO WERE THE TOP 10 MENTIONS FOR THE PMI NETWORK INFLUENCERS THERE. THAT'S QUITE AN IMPRESSIVE LIST. DOWN IN THE LOWER RIGHT CORNER, TWITTER ACTUALLY KEEPS TRACK OF WHAT'S TRENDING ON TWITTER, AND WE GOT TO BE NUMBER 10. WE BEAT OUT A WHOLE BUNCH OF OTHER PEOPLE. WE DIDN'T QUITE BEAT OUT "ANOW YOUR PARTNER IN FIVE WORDS." I DON'T KNOW WHAT THAT WAS ABOUT. OBVIOUSLY CHRIS CHRISTIE WAS SORT OF HAVING A DAY ANNOUNCING FOR PRESIDENT AND THAT WONDERFUL MISTY COPELAND STORY ABOUT A BALLET, BUT NOPT LESS NONETHELESS, FOR PMI NETWORKS TO GET ON THE LIST HERE OF WHAT'S TRENDING ACROSS TWITTER IS PRETTY IMPRESSIVE. SO BRAVO TO ALL THOSE TW WHO TREATED. WE WILL BTWEETED. WE WILL BE DOING THAT. WE'RE GOING TO HAVE A BUZZ GOING AND YOU WILL HEAR IN A MINUTE FROM BRAY ABOUT HOW YOU'RE GOING TO LEARN FROM THAT. SO FINALLY, THIS QUOTE FROM THE PRESIDENT ON JANUARY 30TH, WHEN MORE DETAILS WERE BEING PUT FORWARD ABOUT THE PRECISION MEDICINE INITIATIVE AND YOU CAN SEE TH THE DNA DOUBLE HELIX IN THE PHOTOGRAPH. IT WAS MOUNTAIN IT EAST ROOM FOR THAT POINT. SAYING I'M PROUD WE HAVE SO MANY PATIENTS' RIGHTS ADVOCATES HERE TODAY. THERE WERE SIGNIFICANT NUMBERS ON JANUARY 30TH. THEY'RE NOT GOING TO BE ON THE SIDELINES, IT'S NOT GOING TO BE AN AFTERTHOUGHT. THEY'LL HELP US DESIGN THE INITIATIVE FROM THE GROUND UP, MAKING SURE WE HARNESS NEW TECHNOLOGIES AND OPPORTUNITIES IN A RESPONSIBLE WAY. THAT'S WHAT WE'RE HERE TO TRY TOLY UTOLIVE UP TO, THAT PROMISE. I'M SURE WITH THE GROUP THAT'S ASSEMBLED HERE, THAT'S EXACTLY WHAT IS GOING TO HAPPEN. SO THANK YOU ALL FOR BEING HERE AND LISTENING TO THIS INITIAL INTRODUCTION OF SORT OF SOME OF THE CONTEXT, BUT I NOW WANT TO INTRODUCE BRAY PATRICK-LAKE, CO-CHAIR OF THIS WORKING GROUP. BRAY HAS A VERY IMPORTANT BAB GROUND THAT FITS HERE. SHE'S CURRENTLY SERVING IN DUAL ROLES AT DUKE UNIVERSITY AS THE DIRECTOR OF STAKEHOLDER ENGAGEMENT FOR THE CLINICAL TRIAL TRANSFORMATION INITIATIVE AND DIRECTOR OF PATIENT ENGAGEMENT. ALTHOUGH I THINK SHE'S PROBABLY DISTRACTED A BIT FROM THOSE DUTIES BY WHAT WE'VE ASKED HER TO DO AS PART OF PRECISION MEDICINE. OF SHE KNOWS ABOUT PATIENT ENGAGEMENT. IN 2010, SHE FOUNDED A RESEARCH FOUNDATION AFTER EXPERIENCING HERSELF A LACK OF DEFINITIVE SCIENTIFIC INFORMATION REGARDING THIS CONDITION WHEN SHE WAS A PATIENT IN A CLINICAL TRIAL THAT DIDN'T GO WELL. SO SHE'S A REBEL ROUSER AND SHE'S BROUGHT HER EXPERTISE AND DISRUPTIVE SENSIBILITIES TO BEAR. SHE'S BEEN HEAVILY INVOLVED IN PREVIOUS CONVERSATIONS WITH FDA, HFDA,, WITH IOM, WITH P PCORI, SHE WORKS TIRELESSLY AS CO-CHAIR AND BRINGS HER AMAZING SPR TEASE AND ENERGY TO THE PMI, SO PLEASE WELCOME BRAY PATRICK-LAKE. >> SO THANK YOU TO FRANCIS, THAT WAS A LOVELY INTERCAN DUCKS, I'LL BE REMINDED TO SHORTEN MY BIOAFTER THIS MEETING. SO OKAY. WELCOME, EVERYONE. AS FRANCIS SAID EARLIER, WE KNOW THE FOURTH OF JULY VACATIONS ARE UPON US AND THANK YOU SO MUCH FOR TAKING TIME TO BE HERE, BUT I ACTUALLY THINK HA THAT IS VERY IMPORTANT BECAUSE ON THE FOURTH OF JULY, WE CELEBRATE THE BIRTH OF OUR NATION AND TODAY WE'RE COMING TOGETHER TO CELEBRATE THE BIRTH OF A COHORT, OF OUR 1 MILLION RESEARCH VOLUNTEERS AND TO BEGIN OUR RESEARCH REVOLUTION OF WE, THE PEOPLE. SO THE PRECISION MEDICINE INITIATIVE IS A TEAM SPORT, AND SO I ASK YOU INSTEAD OF A DECLARATION OF INDEPENDENCE TO MAKE A DECLARATION OF INTERDEPENDENCE. UNDER THE BOLD LEADERSHIP OF THE PRESIDENT OF THE UNITED STATES AND DR. FRANCIS COLLINS, AND PERHAPS WE CAN ACTUALLY LIKEN THEM TO GEORGE WASHINGTON AND JOHN ADAMS, ALTHOUGH PERHAPS FRANCIS WOULD LIKE TO BE LIKENED TO SAM ADAMS BECAUSE HE HAS A COOL BEER NAMED AFTER HIM. BUT REGARDLESS, YOU ARE THE ARMY, AND THE ARMY IS NOW MARCHING, AND TOGETHER WE ARE HERE TO LIBERATE THE DATA FOR THE GOOD OF OUR NATION. SO WE HAVE THIS TREMENDOUS OPPORTUNITY IN FRONT OF US TO ENACT REAL CHANGE. WE TALKED ABOUT IT FOR MANY YEARS IN MANY CAN DIFFERENT SETTINGS, THE PROMISE OF A HUMAN GENOME, AND FRANKLY BEING FROM THE PARTICIPANT COMMUNITY, I THINK WE'VE WAITED WAY TOO LONG, AND NOW IS THE TIME. WE STILL HAVE A FEW THREATS OUT THERE. I THINK THE PRESSURE OF EARLY WINS AND THE TEMPTATION TO TAKE SHORTCUTS OR SIDE STEP THE TOUGH ISSUES. WE KNOW THERE'S BEEN IMPORTANT ADVANCEMENTS IN SCIENCE, BUT THERE ARE INSTANCES WHERE WE KNOW WE ALSO CAN COULD HAVE DONE BETTER. BUT WE CLING TO FAMILIARITY, AND THAT'S BECAUSE WE'RE MORE COMFORTABLE FAILING IN A FAMILIAR WAY THAN ACTUALLY EMBRACING CHANGE. SO I WANT TO INTERJECT A THOUGHT HERE, AND THAT IS DO WHAT YOU ALWAYS DO, GET WHAT YOU ALWAYS GOT. AND I WANT TO SAY THAT AGAIN. DO WHAT YOU ALWAYS DO, GET WHAT YOU ALWAYS GOT. SO WE KNOW WHAT WE NEED TO DO, WE KNOW WHAT THE TOUGH ISSUES ARE. WE'RE HERE TODAY TO EXPLORE THEM, COME UP WITH SOLUTIONS AND MAKE RECOMMENDATIONS TO THE WORKING GROUP ON HOW WE CAN ACTUALLY SOLVE THESE PROBLEMS. BUT I WILL TELL YOU, WE'RE GOING TO GET OUT OF OUR COMFORT ZONE VERY PRAPPEDLY WITH THE PRECISION MEDICINE INITIATIVE. WE HAVE SOME NEW THINGS TO TRY, AND I THINK WE NEED TO ALL BE OKAY WITH THAT. SO, MANY OF US HERE HAVE BEEN TO A NUMBER OF MEETINGS AND WE ARE TIRED OF TALKING ABOUT THE ISSUES SO I ENCOURAGE YOU ALL TO BE REALLY DRIVEN IN YOUR COMMENTS TO GIVE US SOLUTIONS AND TELL THIS WORKING GROUP HOW WE CAN SOLVE THESE PROBLEMS BECAUSE IT IS TIME TO PUSH THE BOUNDARIES OF SCIENCE, TECHNOLOGY AND PARTNERSHIPS WITH PARTICIPANTS. AND IT'S REALLY TIME TO GET OUT OF OUR COMFORT ZONE AND EMBRACE THE OPPORTUNITY TO CHANGE THAT WE HAVE PRESENTED BEFORE US. SO ON BEHALF OF THE ADVISORY COMMITTEE TO THE DIRECTOR WORKING GROUP ON PRECISION MED, MEDICINE, WE ARE IT GOING TO EXPLORE SOME ISSUES TODAY AND SO WE'RE GOING TO ASK YOU SOME SPECIFIC QUESTIONS AROUND HELPING US UNDERSTAND THE KEY DESIGN FEATURES OF A PARTICIPANT-DRIVEN INCLUSIVE AND DIVERSE COHORT. WE NEED YOU TO HELP US ENGAGE AND MEET THE NEEDS OF COMMUNITIES THAT HAVE BEEN HISTORICALLY UNDER CANREPRESENTEUNDERREPRESENTED.WE 'RE ASKING YOU TO HELP US LEARN MORE ABOUT THE DIRECT FROM PARTICIPANT COHORT MODEL THAT WE'RE SEEING POP UP A LOT IN THE PATIENT POWERED RESEARCH NETWORK MODEL, AND THEN ALSO WHAT ARE THE NEW MODELS OF ACTIVE ENGAGEMENT THAT COULD BE DEPLOYED IN OUR EXISTING COHORTS AS WE TALK ABOUT HOW WE MIGHT HAVE A HYBRID MO IT DELL AND BRINMODEL AND BRING INFROM EXISTING COHORT S. SO WE HAVE A JAM PACKED EXCITING 1 1/2 DAYS PLANNED TOGETHER, AND I REALLY WANT TO THANK THE TEAM THAT ORGANIZED THIS WORKSHOP. IF YOU WERE PART OF THE WORKSHOP ORGANIZING TEAM, WOULD YOU PLEASE RAISE YOUR HANDS? YES. OKAY. [APPLAUSE] THANK YOU. THEN OUT OF THAT GROUP, THERE WAS A SUBSET LITERALLY HELD AGAINST THEIR WILL ONE DAY WHEN I SAID WE HAVE TO GET THIS AGENDA NAILED DOWN. NO JOKE, I HELD THEM PROBABLY UNTIL 10:30 AT NIGHT. SO IF YOU'RE ONE OF THOSE PE, PLEASE RAISE YOUR HAND. THANK YOU. I DIDN'T SAY IN A BAR. THANK YOU, KATHY HUDSON. BUT OKAY, IT WAS IN A BAR. BUT I DON'T KNOW. I JUST WAS SO IMPRESSED THAT NOBODY ACTUALLY JUST GOT UP AND WALKED OUT. SO BASICALLY WE ARE LOOKING TO HAVE HEAVY AUDIENCE PARTICIPATION. SO THERE ARE MICROPHONES PLANTED AROUND FOR THE WORKING GROUP. THERE ARE TW ON THE STANDS, AND THEN WE'VE GOT THREE THAT CAN BE CIRCULATED THROUGHOUT THE DAY. SO EACH SESSION ACTUALLY HAS BUILT INTO IT TIME FOR DISCUSSIONS. YOU HAVE HEARD THIS WORKSHOP IS BEING WEBCAST AND YOU CAN FOLLOW THE TWITTER DISCUSSION AS HASH TAG PMI. I WILL BE TWEETING LESS TODAY BUT IF YOU PARTICIPATED, IT WAS JUST A SUPER RAPID FIRE AMAZING EVENT WHERE YOU COULD HARDLY KEEP UP WITH THE VOLUME OF INFORMATION THAT WAS COMING IN. A LOT OF YOU THAT PARTICIPATED IN THAT, WE ACTUALLY HAVE THE EXPERTS AND THE THOUGHT LEADERS IN THIS ROOM, AND SO I AM GOING TO ASK YOU TO CONTINUE YOUR TWEETS AND ALSO MAKE SURE YOU GET TO THE MICROPHONE AND HELP US PULL OUT THE NUGGETS THAT WE'RE GOING TO NEED TO WRITE THIS REPORT. FOR THOSE OF YOU THAT ARE ONLINE RHT NOW, IF YOU ARE COMFORTABLE DOING SO, GO AHEAD AND TWEET YOUR PRIMARY LENS OR PARTICULAR COMMUNITY THAT YOU IDENTIFY WITH AND JUST LET US KNOW WHO'S OUT THERE AND PARTICIPATING IN OUR TWEETING -- I GUESS IT'S NOT REALLY A TWEET CHAT TODAY. OUR TWEETING TODAY. SO THE FLOW OF THE DAY, WE WILL HAVE A BREAK FROM 10:00 TO 10:15. LUNCH WILL BE FROM 12:30 TO 1:30. AND THEN WE'LL HAVE ANOTHER AFTERNOON BREAK FROM 3:00 TO 3:15, AND OUR MEETING WILL ADJOURN AND 5:30. WE HAVE WHAT I WOULD CALL AT THE PMI ACDWG AN EX-TENDED LUNCH, WE'VE NEVER HAD A FULL HOUR BEFORE, SO I ASK YOU TO TAKE ADVANTAGE OF THAT OPPORTUNITY. WE HAVE EXPERTS AND THOUGHT LEADERS FROM MANY COMMUNITIES HERE, SO SIT WITH PEOPLE YOU DON'T KNOW. LET'S BRAINSTORM AND LET'S REALLY WORK THROUGH A LOT OF THE ISSUES AND THE SOLUTIONS AND SHARE OUR NONL AN KNOWLEDGE AND INFORMATION OVER LUNCH. DURING THE BREAKS, LIVE ANALYTIC OF THE DISCUSSION OVER TWITTER WILL BE DISPLAYED ON THE ROOM AND ON WEBCAST. NIH IS ENCOURAGING THOSE OF US HERE IN PERSON AT THE MEETING TO PARTICIPATE IN THE FACES OF PRECISION MEDICINE INITIATIVE VIDEO CHECK SU COLLECTION. THERE'S A CAMERA CREW ON SITE WHO CAN ACTUALLY HELP YOU SHOOT A SHORT VIDEO ABOUT PMI, SO WE WOULD LOVE IT IF YOU COULD GO DOWN TO THE VIDEO BOOTH. IT'S THAT WAY, AND THE ROOM IS GG607. SO WITH THAT SH I WOULD NOW LIKE TO INTRODUCE YOU TO IT OUR ACD PMI WORKING GROUP MEMBER, DR. TON TONY COLES, CHAIRMAN AND CHIEF -- AND VERNAL BRANCH ON PARTICIPANT DRIVEN COHORT. THANK YOU. [APPLAUSE] >> THANK YOU, BRAY, AND CAN GOOD MORNING TO EVERYONE. EXCITING AND INTERESTING DAY, AND I CAN'T THINK AFTER BETTER WAY IT TO BEGIN THE DAY THAN BY HEARING FROM SUN WHO H AT THE GROUND LEVEL HAS BEEN A REAL FORCE OF THE CONVERSATION ON BEHALF OF PATIENT SURVIVORS AND MOST IMPORTANTLY NOW PARTICIPANTS AS WE THINK ABOUT THE PROJECT THAT IS IN FRONT OF US. VERNAL BRANCH IS A 20-YEAR VETERAN IN THE WORLD OF PATIENT ADVOCACY. SHE IS HERSELF PART OF A MOVING FORCE CALLED THE NATIONAL BREAST CANCER COALITION AND IS A SURVIVOR OF THAT DISEASE BY 20 YEARS. SHE IS, IF YOU WILL, THE PROTOTYPE OF THE PARTICIPANTS THAT FRANCIS TALKED ABOUT IN THE OPENING COMMENTS. MOSTLY BECAUSE NOT ONLY IS SHE A SURVIVOR OF A HORRIFIC DISEASE, BUT SHE IS HERSELF ON THE FRONT LINES OF ADVOCATING FOR ALL OF THE PEOPLE WHO SUFFER BOTH PATIENTS AS WELL AS THEIR FAMILY MEMBERS, SO PLEASE GIVE VERNAL A WARM WELCOME, AND I'M SURE YOU WILL ENJOY HEARING WHAT SHE HAS TO SAY, THEN WE WILL COME BACK AND TAKE A FEW QUESTIONS IN THE OPEN SESSION. VERNAL? [APPLAUSE] >> THANK YOU, TONY. AND THANK YOU FOR ALL THE PLANNERS OF THIS MEETING FOR INVITING ME TO SPEAK TO YOU TODAY. WHEN I WAS DIAGNOSED 20 YEARS AGO, THE SCIENCE WAS NOT QUITE WHAT IT IS TODAY IN HELPING PATIENTS TO MAKE HEALTH DECISIONS. SO I REALLY HAD TO RELY ON INFORMATION FROM MY ONCOLOGIST AND ALSO GET SECOND OPINIONS THAT I ON TAPED ALSO. ALSO IN 40 YEARS, I'VE MOVED LIKE 13 TIMES WITHIN DIFFERENT HEALTH SYSTEMS, THE INTERNET AND GOOGLE WERE NOT WHAT IT IS TODAY, SO WE ARE IN A VERY FAST MOVING AGE WHERE EVERYTHING IS AVAILABLE FOR THE PATIENT. BUT I REMEMBER 20 YEARS AGO MY HUSBAND SAID TO ME, HE SAID I REALLY WANT YOU TO BE AROUND TO ROCK SOME GRANDBABIES ONE DAY. AND I SAID, HONEY, I SAID, NOBODY'S GOING TO HAVE THOSE THREE BOYS. I SAID FIRST OF ALL, THEY'RE HIGH MAINTENANCE, AND THEY'RE MAMA'S BOYS. HERE I AM TODAY, 20 YEARS LATER, AND ALL THREE SONS HAVE MAR HE'D AND MARRIEDAND I HAVE SIX GRANDCHILDREN, S O I AM A SURVIVOR. [APPLAUSE] WHEN I FIRST HEARD THE PRESIDENT'S -- PRESIDENT OBAMA'S ANNOUNCEMENT ABOUT PRECISION MEDICINE NICHE OFTIVE, I THOUGHT THIS IS REALLY A COMPLEX PROBLEM. FROM THE PATIENT AND FROM THE PROVIDER'S POINT OF VIEW. WITH LOTS OF COMPONENTS THAT ARE GOING TO NEED TO BE CONSIDERED. I THINK THERE'S GOING TO BE A LOT OF BARRIERS, THE DESIGN STUDY ITSELF AND TRANSPARENCY. AND DR. COLLINS ALLUDED TO ALL OF THOSE TODAY. WITH THE RAPID SEQUENCING OF TUMORS AND THE PATHWAYS INVOLVED WITH PROGRESSION OF DISEASE, THIS HAS NOW BECOME AN ISSUE FOR PATIENTS WITH THE BURDEN OF TISH IT EU EXTRACTION OR BLOOD, HOW OFTEN DOES THIS NEED TO BE DONE AND WHO PAYS FOR THIS IF IT'S NOT APPROVED BY THE INSURANCE COMPANIES. SO IT NEEDS TO EITHER BE GOVERNMENT OR INDUSTRY. SOME CHALLENGES WOULD BE FROM THE PAIRS OF THESE NEW DIAGNOSTIC TESTS AND DRUGS WILL DRIVE UP THE HEALTHCARE COSTS, BUT I SEE THIS WILL BE A SAVINGS IT WE CAN DO THE TEST THAT WILL GIVE THE RIGHT INFORMATION. SO THE TREATMENT WILL BE MORE IMPACTFUL TO THE PATIENT. WITH THE DESIGNING OF THE STUDY COHORT, IT WILL BE BENEFICIAL TO THINK ABOUT HOW TO PREVENT DISEASE WITH SOME OF THESE NEW DISCOVERIES FOR THE PRECISION MEDICINE INITIATIVE. THERE'S A NEED TO THINK OUTSIDE OF THE BOX WHEN CREATING A MODEL FOR RECRUITMENT TO THIS COHORT THAT WILL INCLUDE COMMUNITY EFFORT AND ESPECIALLY THE IN THE RURAL AND MINORITY COMMUNITIES. THIS IS HARD WORK. BUT THE EFFORTS NEED TO BE DONE BECAUSE PEOPLE WANT TO KNOW THE IMPORTANCE OF THEIR PARTICIPATION AND TO BE ASKED. I REMEMBERED WHEN I WAS WORKING ON A REALLY IMPORTANT STUDY CALLED THE SISTER STUDY, AND WOMEN WERE SO WILLING TO PARTICIPATE IN THIS STUDY BECAUSE THEY FELT LIKE THIS WAS GOING TO MAKE A DIFFERENCE FOR THE NEXT GENERATION. SO WOMEN SIGNED UP BY THE DROVES. WE WERE LOOKING TO RECRUIT WITH 50,000 WOMEN AND WE GOT 55,000 WOMEN. THESE ARE WOMEN THAT HAD NOT HAD BREAST CANCER BUT THEIR SISTERS HAD BREAST CANCER. SO I THINK WE NEED TO TAKE A MODELS THAT HAVE BEEN REALLY GOOD AT RECRUITING AND LOOK AT HOW THEY DID THAT RECRUITMENT, AND THIS IS UP WIT ONE OF THOSE. THIS IS HARD WORK, BUT THE EFFORTS NEED TO BE DONE BECAUSE PEOPLE WANT TO KNOW THE IMPORTANCE OF THEIR PARTICIPATION AND BE ASKED. THERE'S ALSO A NEED TO DO SOME WORK WITH PRIMARY CARE PROVIDERS IN ORDER TO MAKE THIS INITIATIVE WORK FOR RETRIEVING RECORDS AND ENCOURAGING THEIR PATIENTS. PATIENTS WILL LOOK TO THEIR LONG TERM PROVIDERS FOR ADVICE ABOUT PARTICIPATION BECAUSE THEY TRUST THEM. THIS IS WHERE WE NEED THE PATIENTS TO BE INVOLVED. IN CLINICAL STUDY DESIGNS. FOR PATIENTS THAT ARE GOING TO BE IN THE RECRUITMENT TO HAVE MORE OF AN IMPACT FOR SHOWING IMPROVED CARE. WHEN TALKING WITH PATIENTS, THEY OFTEN DON'T PARTICIPATE BECAUSE OF RANDOMIZATION, WHICH I UNDERSTAND IS DONE BECAUSE THEY DON'T WANT THE STUDY TO BE BIASED, BUT THAT IS WHY SO MANY OF THESE STUDIES DON'T GET THE NUMBER OF PATIENTS THEY NEED TO CONDUCT A STUDY. AND END UP CLOSING. THIS IS A DISSERVICE TO THOSE WHO CAN DID ENROLL, AND ALSO A WASTE OF VALUABLE RESOURCES AND MONEY. TARGETING IN THIS COHORT THROUGHOUT THE U.S. IN AREAS FOR MINORITIES AND RURAL COMMUNITIES WITH A STRONG EDUCATIONAL COMPONENT IS KEY. IT IS DIFFICULT, YES, BUT THERE IS SOMETHING THAT NEEDS TO BE DONE IN ORDER TO ACCRUE THE PATIENTS TO GET THE ANSWERS TO THESE QUESTIONS FOR PRECISION MEDICINE RESEARCH. MY EXPERIENCE IN THE MINORITY COMMUNITY IS VERY PERSONALIZED FOR GETTING PATIENTS INVOLVED WITH STUDIES AND SCREENING PROGRAMS. BECAUSE OF THIS OUTREACH, USING METHODS THAT DON'T ALLOW THE RESEARCHERS ACCESS BECAUSE OF NOT BEING KNOWN IN THE COMMUNITY, BUT TRAINING OTHERS WITHIN THE COMMUNITY FOR OWNERSHIP AND PRIDE, FOR BRINGING SOMETHING OF VALUE TO THE COMMUNITY THAT WILL EVENTUALLY BE BENEFICIAL. TRANSPARENCY, PEOPLE WHO PARTICIPATE WANT TO BE INFORMED OF OUTCOMES OF THEIR PARTICIPATION, AND THIS HAS NOT BEEN ACHIEVED IN A TIMELY WAY IN THE PAST. SOCIAL MEDIA HAS BEEN A TERRIFIC TOOL FOR SOME RECRUITMENT AND INFORMING PEOPLE ABOUT RESEARCH. HOWEVER, RESEARCHERS DO NOT LIKE TO INFORM PATIENTS UNTIL THEY HAVE PUBLISHED THEIR OUTCOME RESULTS. THIS ALSO NEEDS TO CHANGE. SO THAT PATIENTS CAN FEEL THE VALUE OF THEIR PARTICIPATION IN RESEARCH. THERE NEEDS TO BE A WAY TO KEEP PARTICIPANTS IN THE COHORT INFORMED SO RESEARCHERS CAN STILL PUBLISH RESULTS. I WILL END WITH THE FACT THAT 20 YEARS AGO, I WAS NEVER OFFERED A CLINICAL TRIAL OR STU CAN DI TO STUDY TO B E INVOLVED IN, BUT I HAVE SINCE BEEN INVOLVED IN SEVERAL STUDIES THAT HAVE BEEN COLLECTING DATA. I DO THIS BECAUSE I WANT TO ADD TO THE INFORMATION FOR OTHER MEMBERS OF MY IMMEDIATE FAMILY AND EX-TENDE EXTENDED FAMILY MEMBERS. THIS IS AN IMPORTANT ELEMENT FOR GETTING PEOPLE INVOLVED WITH THIS COHORT FOR MAKING IT NOT ABOUT THEM, BUT ABOUT THE FUTURE GENERATIONS. INFORMATION ACHIEVED FROM THE PRECISION MEDICINE RESEARCH HELPS TO TAKE PREVENTION WITHIN FAMILIES TO A NEW LEVEL OF UNDERSTANDING AND IMPLEMENTATION. I THINK THIS IS GOING TO BE A REAL KEY FOR PATIENTS TO GET INVOLVED. I THINK THAT WHEN YOU MAKE IT NOT ABOUT THEM BUT ABOUT THAT NEXT GENERATION, THEY WILL WANT TO BE INVOLVED IN THIS PARTICULAR COHORT. THANK YOU. [APPLAUSE] >> THANK YOU, VERNAL. THIS IS -- I THINK WE'VE GOT ABOUT 20 MINUTES OR SO TO ENGAGE IN SOME CONVERSATIONS. SO I'D LOVE TO OPEN UP THE FLOOR FOR QUESTIONS FOR VERNAL. THIS IS ALWAYS THAT VERY AWKWARD MOMENT WHERE NOBODY RAISES THEIR HAND AND I'VE GOT TO FILL TIME SO LUCKILY I HAVE THREE QUESTIONS TO FILL TIME, BUT PLEASE DON'T FORCE ME TO USE THEM. [LAUGHTER] >> ALL RIGHT. I SEE A HAND JUST HERE. WOULD YOU MIND IT -- ACTUALLY IF YOU DON'T MIND USING YOUR MICROPHONE, AND IF YOU'LL SAY YOUR NAME SO OUR COLLEAGUES ACROSS THE ROOM WILL BE ABLE TO IDENTIFY YOU. >> SHA BETTER? LUCIA SAVAGE, OMC. ONE OF MY JOBS IS HELPING PEOPLE UNDERSTAND WHAT THEIR PRIVACY RIGHTS THERE AND PHYSICIANS UNDERSTAND WHAT THEIR PRIVACY OBLIGATIONS ARE. I WAS REALLY STRUCK BY WHAT YOU SAID ABOUT HOW WE SPEAK TO OUR RESEARCH COHORT AND HOW WE GET PEOPLE INVOLVED IN RESEARCH. I WAS WONDERING IF YOU COULD JUST GIVE A LITTLE ANECDOTE ABOUT WHAT IT IS IN THE LANGUAGE THAT MAKES PEOPLE INTERESTED IN IT JOINING A COHORT. WAS THERE PARTICULAR LANGUAGE THAT SPOKE TO YOU OR YOUR SISTER STUDY THAT MIGHT NOT HAVE BEEN USED IN EARLIER ACTIVITIES, BECAUSE I THINK WE HAVE TO SPEAK IN DIFFERENT LANGUAGES TO DIFFERENT AUDIENCES. >> YES, ONE OF THE THINGS THAT WE USED FOR THE SISTER STUDY, AND NCI REALLY HELPED US WITH THE MESSAGING, AND I THINK THAT THAT'S GOING TO BE A REAL KEY FOR OUTREACH IN THE COMMUNY. THEY HELPED US WITH OUR MESSAGE BECAUSE WE ACTUALLY GOT WOMEN FROM ALL OF THE DIFFERENT COMMUNITIES, WHETHER IT WAS NATIVE AMERICAN, ASIAN PACIFIC ISLANDERS, AFRICAN-AMERICANS, WE HAD WOMEN THAT ENROLLED IN THE STUDY, SO WITH H WE HAD THEM TALK FROM SISTERS.L POINT OF VIEW WITH THE SISTER WHO HAD BREAST CANCER AND THE SISTER WHO HAD NOT GOTTEN BREAST CANCER. WE FRAMED THE QUESTION SO THAT THIS SPOKE TO THE COMMUNITY OF HOW IMPORTANT IT WAS. AND THIS WAS GOING TO BE A LONG TERM STUDY THAT WAS GOING TO LAST FOR ABOUT 10 YEARS OR MORE. SO I THINK WHEN YOU BRING THE BASIS AND USE THE PEOPLE THAT ARE IN THE COMMUNITY AND WE WORKED VERY, VERY STRONGLY WITH THE FAITH BASED COMMUNITY, I WENT TO A LOT OF BAPTIST CONVENTIONS AND METHODIST WOMEN'S ASSOCIATIONS WORKED WITH SORORITIES, SO WE WENT WHERE THE PEOPLE WERE. AND I THINK THAT'S WHAT YOU'RE GOING TO HAVE TO DO. THEY'RE GOING TO HAVE TO BE BOOTS ON THE GROUND, THEY'RE GOING TO HAVE TO BE -- I THINK ONE GROUP OF WOMEN THAT I REALLY WORKED WITH VERY CLOSELY WAS IN THE PROMOTERS IN THE THE LATINA COMMUNITY. THEY WERE SO WILLING TO GET OUT THERE AND GET PEOPLE ENROLLED IN THE STUDY, AND I THINK THIS IS ANOTHER WAY OF DOING THIS. BUT YOU REALLY HAVE TO -- IT'S GOING TO BE ONE BY ONE, BUT YOU CAN DO IT ON A LARGE SCALE, AND SOMETIMES MESSAGING THROUGH BILLBOARDS AND THINGS LIKE THAT DON'T WORK, IT HAS TO BE A PERSONAL LEVEL. >> THANK YOU. I SEE -- AND I'LL REMIND OUR COLLEAGUES ON THE SIDE, THERE ARE FLOOR MICS. SO THE GENTLEMAN IN THE BLUE SHIRT. >> MIKE LAUER. I WAS INTRIGUED ABOUT THE COMMENTS YOU MADE ABOUT RANDOMIZED TRIALS. SOME OF US SEE THIS COHORT AS POTENTIALLY A PLATFORM WHICH WOULD ENABLE RAPID EXECUTION OF RANDOMIZED TRIALS IN PRECISION MEDICINE. WHAT ARE YOUR THOUGHTS? >> YOU KNOW, AND I THINK THAT THAT'S WHY PEOPLE DON'T ENTER IN TRIALS, BECAUSE IN TALKING TO PATIENTS, THEY SAID THEY DON'T WANT TO BE RAN COMIZED, THEY WANT TO HAVE A CHOICE. AND THAT'S WHY I THINK WE ONLY GET 3% OR PROBABLY LESS PATIENTS IN CLINICAL TRIALS. IF WE COULD DESIGN A TRIAL WHERE PATIENTS CAN CHOOSE, I THINK YOU'LL FIND THAT YOU'RE GOING TO GET THE NUMBERS THAT YOU NEED EACH SIDE, WHETHER IT'S ON THE STANDARDS OF CARE OR ON A NEW INVESTIGATIONAL DRUG OR DEVICE. I THINK THAT YOU CAN DESIGN IT DIFFERENTLY SO THAT PEOPLE CAN HAVE A CHOICE. PEOPLE WANT INPUT INTO WHAT THEY'RE GOING TO PARTICIPATE IN. I THINK THAT NEEDS TO HAPPEN. I DON'T KNOW HOW TO DO IT, BUT THERE ARE SOME SMART PEOPLE OUT THERE THAT COULD PROBABLY DO THAT. >> LOTS OF QUESTIONS, BUT VERNAL, LET ME, IF I CAN, JUST INTERRUPT THE FLOW FROM THE FLOOR AND ASK YOU A QUESTION. ONE OF THE THINGS IMPLICIT IN MIKE LAUER'S QUESTION IS THIS NOTION THERE ARE SOME BARRIERS TO THE BROAD INCLUSION OF ALL COMMUNITIES IN CLINICAL TRIALS. HOW DO YOU THINK ABOUT BUILDING TRUST, BUILDING BRIDGES, BOTH TRUST BRIDGES AND INFRASTRUCTURE BRIDGES, TO IT ADDRESS THIS PARTICULAR PROBLEM AND REMOVE SOME OF THE BARRIERS? HOW HAVE YOU BEEN SUCCESSFUL? >> I THINK ONE OF THE WAYS IS REALLY TALKING ABOUT KEEPING IT PERSONAL, MY OWN EXPERIENCE, AND I THINK YOU HAVE TO -- I REMEMBER WORKING ON A -- AT UCSF, AND AS PATIENTS, WE ACTUALLY TALKED ABOUT OUR OWN EXPERIENCES AND REALLY BUILT THAT TRUST WITHIN THE CANCER COMMUNITY SO THAT PEOPLE WERE MORE WILLING TO DONATE TISSUE. I THOUGHT THAT THAT WAS A -- AND WE TOLD THEM WHY IT WAS IMPORTANT. AND HOW IT WAS GOING TO BE USED FOR RESEARCH. AND IT WAS GOING TO MAKE A DIFFERENCE, MAYBE NOT FOR THEM, BUT AT SOME POINT IN TIME, IT WOULD IT AB USEFUL WAY OF IT DESIGNING DRUGS TO TARGET THEIR CANCER. SO IT WAS A MATTER OF TALKING TO PATIENTS IN A WAY SO THAT THEY UNDERSTOOD. THAT'S WHERE I THINK A LOT OF THE LANGUAGE THAT IS USED NOW IS SO OVER A PATIENT'S HEAD THAT THEY DON'T REALLY UNDERSTAND WHAT IT TISSUE, WHAT BLOOD IS BEING USED FOR AND HOW IT CAN BE USEFUL FOR RESEARCH. >> SO TRANSLATION TRUST IS WHAT I'M HEARING. THERE'S MORE HANDS. >> CLAUDIA WILLIAMS. I JUST WANTED TO THANK YOU SO MUCH FOR THE GREAT PRESENTATION, AND WHAT'S BEEN REMARKABLE ABOUT THIS WHOLE EFFORT IS NIH'S SKILL IN BRINGING IN SO MANY VOICES THAT HAVE EXPERTISE IN THIS QUESTION OF HOW TO CREATE A PARTICIPANT COHORT, SO I JUST WANT TO INVITE THE WHOLE ROOM TO HELP MAYBE IN RESPONSE TO WHAT VERNAL SAID. WHAT DOES IT MEAN TO YOU, WHAT WOULD IT LOOK LIKE, WHAT WOULD SUCCESS LOOK LIKE IF WE'VE SUCCEEDED IN CREATING A NEW MODEL THAT'S OPEN, CREATES RESPONSIBLE DATA SHARING AND TRULY IS PARTICIPANT DRIVEN? WOULD LOVE TO HEAR YOUR THOUGHTS. SO AN INVITATION TO EVERYONE AS YOU COMMENT AND SHARE THOSE INSIGHTS. >> VERNAL MAY HAVE A THOUGHT BUT I SEE PEARL AND ESTEBAN. SO WHY DON'T WE -- WHY DON'T YOU KICK US OWL, VERNAL, THEN WE'LL GO TO ESTEBAN AND PEARL. >> I REALLY DON'T WANT TO SEE ANYONE EXCLUDED. ANYBODY WHO WANTS TO BE A PART OF THIS COHORT SHOULD BE A PART OF THIS COHORT. I THINK IT'S GOING TO BE IMPERATIVE, I THINK I TOLD YOU I MOVED 13 TIMES AND I SAID A LOT OF THAT MEDICAL HEALTH RECORDS ARE PAPER. I LIVED ALL OVER THE COUNTRY, AND SOME OF THESE PLACES, I DON'T EVEN REMEMBER WHO MY PROVIDER WAS. SO THAT'S REALLY, REALLY -- I THINK OVER THE LAST 20 YEARS, I THINK I COULD PROBABLY GO BACK. I'M 65 YEARS OLD NOW. FORGET THOSE PREVIOUS YEARS, BUT THE LAST 20 YEARS, I COULD PROBABLY GET MY MEDICAL HEALTH RECORDS. SOME OF IT'S GOING TO BE PAPER, AND SOME OF IT -- AND I THINK YOU'RE GOING TO FIND IN THE RURAL COMMUNITIES, IT'S GOING TO BE PAPER RECORDS. THEY HAVEN'T GOTTEN INTO THE ELECTRONIC RECORDS IN SOME COMMUNITIES. BECAUSE THE COMMUNITIES ARE SO SMALL. SO WE REALLY NEED TO THINK OF HOW WE'RE GOING TO USE -- BE CREATIVE AND HOW ARE WE GOING TO BE ABLE TO INCLUDE THESE PEOPLE IN THIS COHORT WITHOUT ELECTRONIC HEALTH RECORDS. AND IT MIGHT BE EASIER TO CONVERT HOSE IT, WITH YOU WE NEETHOSE, BUT WE NEED TOTHINK OF HOW WE'RE GOING TO DO THAT. BUT I THINK IT'S GOING TO BE IMPERATIVE. I THINK YOU NEED TO BE REAL TARGETED TOO, YOU NEED TO SAY WE NEED TO GO TO THIS COMMUNITY BECAUSE IT'S A VERY UNDERSERVED COMMUNITY AND THERE MAY NOT BE ELECTRONIC HEALTH RECORDS, BUT LET'S SEE HOW WE CAN WORK WITH THIS COMMUNITY. BECAUSE YOU WANT TO BE ABLE TO GET PEOPLE FROM ALL WALKS OF LIFE, NOT JUST THE URBAN AREAS IN THE INNER CITY, WITH YOU REALLY GO OUT INTO COMMUNITIES THAT ARE ARE REALL REALLY HAVING SEVERE -- YOU CAN GO TO THE CANCER REGISTRY AND SEE WHERE THE DISPARITIES ARE, SEE WHERE THE TUMOR BURDEN IS AND LOOK AT THOSE COMMUNITIES AND BE MORE TARGETED, MAYBE, IN THE AREAS FOR RECRUITMENT AND TO THE COHORT. >> ES T ES TA ESTEBAN, PEARL, THEN TO THE FLOOR. >> WHAT YOU SAID WAS INFORMATIVE. ONE OF THE QUESTIONS I HAVE, AND I THOUGHT A LOT ABOUT THIS, IN 1993, WE HAD THE CONGRESSIONAL MANDATE REQUIRING INCLUSION OF WOMEN AND MINORITIES. YOU THOUGHT A LOT ABOUT T WE HAVEN'T MADE A LOT OF PROGRESS, IT'S 2015, WE'RE STILL TALKING ABOUT IT. SO IN HONEST ASSESSMENT, WHAT DO YOU THINK -- OR WHAT HAS PREVENTED US FROM ACHIEVING OUR GOAL OF INCLUSION AND MAINTAINING FOLKS IN THE COHORT? WE'VE BEEN TALKING ABOUT IT FOR A LONG TIME. >> I THINK SOME OF THAT HAS TO DO WITH, YOU KNOW, YES, YOU HAVEN'T BEEN ABLE TO MAINTAIN THE COHORT. ARE YOU SAYING THAT? >> ALMOST EVERYTHING YOU SAID IS EXACTLY SPOT-ON, RIGHT ON, AND IT SEEMS PRETTY SIMPLE TO IMPLEMENT. I'M ASKING YOU IN YOUR OPINION AND DR. COLES' OPINION, WHY HAVEN'T WE DONE IT SO FAR AND WE'RE STILL TALKING ABOUT IT? IT'S BEEN MORE THAN 20 YEARS. CONGRESS REQUIRED THE PASSAGE OF THE LAW TO INCLUDE MINORITIES. >> VERNAL, LET ME TAKE A STAB AT IT. THIS IS JUST AN OPINION BUT I HAD A REAL INTERESTING CONVERSATION WITH COLLEAGUE CAROL HOROWITZ ON THE RIDE OVER FROM THE HOTEL THIS MORNING. WE GOT INTO A CONVERSATION ABOUT RACE BEING A SOCIAL CONSTRUCT, BUT OF COURSE GENETICS AND GENOMICS ARE NOT. THEY'RE SCIENTIFIC CONSTRUCTS. BUT WE CONFLATE THOSE TWO ALL THE TIME AND GET WORRIED BOTH ABOUT THE COLLECTION OF DAY TARK THE INTERPRETATION OF DATA, AND THE APPLICATION OF DATA. SO THERE ARE SOME INTANGIBLES IF YOU WILL THAT DO STAND IN THE WAY OF SCIENTIFIC PROGRESS IN THIS PARTICULAR AREA, AND ONE OF THE QUESTIONS THAT I'VE GOT IN MY OWN MIND AS WE ADVANCE OUR WORK HERE IS HOW DO WE BREAK DOWN SOME OF THOSE CONNECTIONS THAT ARE JUST CONFLATED CONNECTIONS BETWEEN RACE AND GENETICS AND GENOMICS AS SCIENTIFIC TOOLS AND DISAGGREGATE THEM SO THAT WE CAN AS SCIENTISTS AND PARTICIPANTS LOOK AT THEM OBJECTIVELY. SO THAT'S JUST A CONVERSATION THAT I THINK WE SHOULD HAVE. BECAUSE NO LEGISLATION -- I'M REMINDED OF MY UNIVERSITY DAYS. YOU CAN'T LEGISLATE BOTH WAYS. SO NO LEGISLATION IS ACTUALLY GOING TO BREAK DOWN THE BARRIERS AND DISAGGREGATE THAT PARTICULAR CONVERSATION, THAT'S GOT TO BE SOME OF THE WORK THAT WE DO HERE. I WANT TO TAKE SOME MORE QUESTIONS SO LET'S GO TO PEARL AND THEN WE'LL GO TO THE FLOOR. >> THANKS, PEARL O'ROURKE HERE. THANKS SO MUCH FOR YOUR TIME AND YOUR TALK. I AM ARED IF YOU HAVE ANY SUGGESTIONS FOR US TO CONSIDER REGARDING HOW DO WE REACH OUT TO THE COMMUNITIES THAT DON'T THINK THEY HAVE A DISEASE? I MEAN, THERE'S AN AUTOMATIC COMMUNITY YOU'RE GOING AFTER SUCH AS BREAST CAN CANCER OR SISTERS OF BREAST CANCER, BUT WE REALLY NEED THOSE RESILIENT PEOPLE, AND IN TERMS IT OF THE MESSAGING, THINK FOR YOU AND FOR ALSO SUBSEQUENT SPEAKERS, IT WOULD BE VERY HELPFUL TO KNOW WHAT'S GENERALIZABLE TO THOSE WHO ARE NOT QUITE YET DIAGNOSED? >> YOU KNOW, I SPEAK TO A LOT OF GROUPS, ESPECIALLY IN BREAST CANCER AWARENESS, BUT A LOT OF THEM DON'T UNDERSTAND GENETICS, AND SO WE'RE ALL LIVING WITH CANCER. YOU KNOW. IT EXISTS WITHIN OUR BODIES ALREADY. BUT WHAT THEY DON'T UNDERSTAND IS HOW THE DISEASE PROGRESSES AND EVENTUALLY TURNS INTO CANCER. AND SO IT'S A LACK OF UNDERSTANDING, A LACK OF EDUCATION, AND THAT'S WHERE WE NEED TO DO BETTER AT EDUCATING THE GENERAL PUBLIC, BECAUSE I THINK THAT WHEN THEY UNDERSTAND THAT WE'RE ALL GOING TO GET SOME TYPE OF DISEASE DURING OUR LIFETIME, AND CANCER IS THE FASTEST GROWING, I HEARD A STATISTIC THE OTHER DAY THAT IN VIRGINIA, WHERE I LIVE, CANCER IS THE NUMBER ONE KILLER RIGHT NOW. IT HAS SU SURPASSED HEART DISEASE. AND OUR LEDGE SLAY OFTIVE B LEGISLATIVE BO DY HAS TO DO SOMETHING ABOUT THIS. WE'RE GOING, OH, REALLY? SHE HAVEN'T REALLTHEY HAVEN'T REALLY CONCE NTRATED ON THIS. SO NOW WE NEED TO LOOK AT HOW CAN WE EDUCATE THE GENERAL PUBLIC OUT THERE ABOUT HEALTHY LIFESTYLES, PREVENTION, AND SCREENING PROGRAMS. AND A LOT OF PEOPLE DON'T TAKE ADVANTAGE OF THE SCREENING PROGRAMS. AND FOR COLONOSCOPIES, LUNG CANCER, AND WE JUST NEED TO DO A BETTER JOB OF TALKING ABOUT HOW PREVENTION AND HEALTHY LIFESTYLES AND HOW CAN WE PREVENT CERTAIN DISEASES, AND I DON'T THINK WE'VE DONE A REAL GOOD JOB OF THAT. >> I WANT TO GET IN AS MANY QUESTIONS AS WE CAN. LET'S GO TO THE FLOOR MIC AND THEN WE'LL COME BACK IT TO THIS SIDE. >> THANK YOU. I'M DR. DARRELL ROBERTS. I'M A RESEARCHER WITH BATTLE MEMORIAL INSTITUTE. I HAD CONDUCTED RESEARCH SEVERAL YEARS AGO WITH SOME OF THE MOST UNDERSERVED POPULATIONS IN BALTIMORE CITY OF CHILDREN LIVING IN SOME OF THE WORST NEIGHBORHOODS, TRYING TO LOOK AT WHETHER ASTHMA PREDICTS APNEA, APNEA PREDICTS ASTHMA. THE HARDEST PART WE HAD WAS GETTING MESSAGE OUT TO THOSE COMMUNITIES THAT DON'T HAVE TELEPHONES. DON'T REALLY HAVE THAT MUCH ACCESS TO THE BROADER COMMUNITY OF RESEARCH. I ENDED UP GOING DOOR TO DOOR IN SOME OF THESE VERY POOR NEIGHBORHOODS AND SAYING I'M A SCIENTIST, YOU HAVE CHILDREN, I KNOW THAT THERE ARE PROBLES, CAN YOU HELP ME THROUGH A SNOWBALL TECHNIQUE GET TO THE PEOPLE THAT NEED THIS RESEARCH. WE ENDED UP RECRUITING ABOUT 78 CHILDREN TO THIS STUDY. AND IT HAD GREAT FUTURE TO IT BUT BECAUSE OF THE LIMITATIONS AND ACCESS TO THE COMMUNITY, WE JUST COULDN'T GO ANY FURTHER THAN THE R21 GRANT THAT WE FULFILLED WITH THIS. HOW CAN WE USE WHAT YOU'RE PROMOTING TO INCREASE THE AVAILABILITY OF INFORMATION TO THIS COMMUNITY SO THAT WE CAN CONDUCT THESE STUDIES THAT WILL BE IMPORTANT TO IDENTIFYING PROBLEMS IN THIS POPULATION THAT ALLOWS THEM TO GROW HEALTHY, NORMAL LIVES. >> WELL, YOU KNOW, WHEN YOU CONDUCT THE RESEARCH, THERE NEEDS TO BE SOLUTIONS TO HELP THOSE FAMILIES. I FIND THAT A LOT OF TIMES WHEN PEOPLE -- YOU KNOW, THEY'RE DOING THE RESEARCH, BUT THEN THERE NEEDS TO BE SOME REALLY POSITIVE OUTCOMES. HOW CAN WE REDUCE, YOU KNOW, THE BURDEN OF DISEASE, SO THERE NEED TO BE -- SO IF YOU'RE GOING TO DO THE RESEARCH AND GATHER INFORMATION AND DATA, THEN OFFER SOME CONCRETE SOLUTIONS TO REALLY REDUCING THE BURDEN THAT THEY'RE GOING THROUGH. SPECIFICALLY IN ASTHMA. THERE ARE SOME THINGS THAT COULD BE DONE TO REDUCE THE BURDEN, AND THE TRIGGERS THAT CAUSE THE ASTHMA ATTACKS. SO THERE NEED TO BE CONCRETE SOLUTIONS IT IF YOU'RE GOING TO DO THE RESEARCH IT SELF. >> WE'RE GOING TO TAKE A QUESTION HERE. FROM THE FLOOR. >> CAN I RESPOND TO THAT ON THE -- >> SURE. >> IN MY ROLE ON STUDY SECTIONS. ONE OF THE CRITERIA THAT WE AS STUDY SECTIONS SHOULD ENFORCE AND WE DON'T, AND I'M RESPONSIBLE AS WELL, IS THAT WE DON'T LOOK AT THE ABILITY OF THE INVESTIGATORS AND THEIR TRACK RECORD OF RECRUITING. SO OFTENTIMES THERE'S A DISCONNECT IN THE ABILITY TO DO HIGH AND COMPLEX STATISTICAL ANALYSIS ON GENETICS, COMPLEX POPULATIONS, AND THE ABILITY TO RECRUIT, AND THEY OFTEN DON'T GO HAND IN HAND. I'M GOING TO SUGGEST THAT WE ACTUALLY HOLD THEIR FEET TO THE FIRE ON THAT, THAT IF SOMEONE IS IS ASKING TO STUDY AND GET MONEY TO REACH OUT TO COMMUNITIES THAT THEY HAVE THE ABILITY AND TRACK RECORD TO DO SO. >> I DO WANT TO COME BACK TO THAT POINT THROUGHOUT THE DAY SO LET'S TAKE A QUESTION HERE BECAUSE THAT'S A REALLY CRITICAL POINT. AFTER ALL, THIS IS ABOUT PRACTICAL SOLUTIONS AND WHAT WE DO DIFFERENTLY. QUESTION HERE. >> QUESTION AND COMMENT, IF I MAY. I'M JAMIE ROBERTS WITH THE CLINICAL TRIAL TRANSFORMATION INITIATIVE AT DUKE UNIVERSITY. BRAY IS ONE OF MY COLLEAGUES AND INVITED ME HERE. I'M VERY EXCITE TO BE HERE, LOVE HEARING YOUR DISCUSSION AND TALK. I'M FORMERLY OF NINDS, AND AS ONE OF THE PEOPLE AT NINDS AT THE TIME CHARGED WITH MONITORING RECRUITMENT TO IT OUR STUDY, I ASKED FOR THAT VERY THING TO BE CHALLENGED IN CSR ALL THE TIME. I WAS ESSENTIALLY TOLD THAT WE DON'T WANT TO GIVE THEM ANY OTHER REASON NOT TO FUND US. SO -- >> COULD YOU ELABORATE ON THAT? >> WHEN I BROUGHT IT UP TO MY COLLEAGUES WHEN WE WERE REWRITING THE RFAs WHEN THEY EXPIRED AND I SUGGESTED THAT WE NEEDED TO HAVE A MUCH MORE STRINGENT REVIEW OF AN INVESTIGATOR'S ABILITY TO RECRUIT BASED ON PAST PERFORMANCE AND FUTURE PERFORMANCE AND ANY FORMATIVE RESEARCH THAT THEY HAD DONE IN TERMS OF THEIR ABILITY TO SELECT SITES APPROPRIATELY BASED ON THEIR ABILITY TO RECRUIT, THE RESPONSE I RECEIVED WAS, WE DON'T WANT IT TO GIVE THEM ANY OTHER REASON NOT TO FUND THE STUDIES THAT WE'RE BRINGING IN. S I REALLY APPRECIATE THAT COMMENT, AND NO THAT I'M NO LONGER A MEMBER OF NINDS, I FEEL A LITTLE FREER SAYING THAT, BUT THAT IS SOME OF THE RESPONSE FROM, I THINK, PROBABLY NOT JUST NINDS. >> THAT IS A DARK OPEN DOOR IN OUR SYSTEM THAT WE DON'T HAVE AN ENFORCEMENT POLICY ON THAT. >> LET'S TAKE THAT ONE UP. WE'RE GOING TO TAKE ONE MORE QUESTION, IT IF WE CAN, BECAUSE BRAY IS LOOKING AT ME AND YOU WANT US TO END THE SESSION RIGHT ON TIME? DESPITE THE GREAT CONVERSATION -- [LAUGHTER] SUSAN GETS THE LAST QUESTION AND I'M GOING TO DO A VERY QUICK WRAPUP SUMMARY. >> I WOULD BE RESPONNING TO -- I'M RESPONDING TO SOMETHING SAID EARLIER, BUT I THINK IF YOU'RE GOING TO GET PEOPLE TO PARTICIPATE, YOU'VE GOT TO ALSO -- IT NOT A WE-THEM, SO YOU HAVE TO ASK THEM WHAT QUESTIONS THEY'D LIKE TO SEE ANSWERED. AND HAVE THEM BE PART OF DIRECTING WHAT RESEARCH IS GOING TO BE DONE BECAUSE IF YOU'RE DOING RESEARCH THAT THEY FIND INTERESTING AND USEFUL, THEN THEY'RE MUCH MORE LIKELY TO PARTICIPATE THAN IF IT'S SOMETHING THAT RESEARCHERS HAVE THOUGHT OF TO DO -- WHEN IF IT COMEWHEN ITCOMES DOWN. SO IT'S NOT JUST BRINGING EVERYBODY TOGETHER BUT IT'S ACTUALLY ASKING THE COMMUNITY WHAT QUESTINS THEY FEEL ARE NEEDED TO BE ANSWERED. THE SECOND POINT IS THAT HEALTHY PEOPLE ARE VERY -- I THINK YOU HAVE TO GO THROUGH WOMEN. I'M A LITTLE BIASED, BUT WOMEN CONTROL ALL THE HEALTH. THEY CONTROL THE MEN, THEIR KIDS AND THEMSELVES. AND SO IF YOU RECRUIT THROUGH THE WOMEN, YOU CAN ACTUALLY PROBABLY GET THE WHOLE FAMILY, BUT IF YOU AIM IT AT TRYING TO GET THE MEN, THEY'RE NOT GOING TO PAY ATTENTION. [APPLAUSE] >> THANK YOU FOR THAT LAST COMMENT. SO NOW JUST A QUICK WRAP TO AT LEAST WHAT I'VE HEARD IN THIS PARTICULAR SESSION FOUR SPECIFIC THINGS FOR US TO CONSIDER. IF WE TAKE OUR QUEUE FROM WHAT'S HAPPENING IN THE NATIONAL CONVERSATIONS AROUND POLICE REFORM AND CRIMINAL JUSTICE REFORM, HAVING THE TOUGH CONVERSATIONS ABOUT WHY WE HAVE THESE PARTICULAR SETS OF ISSUES IS REALLY GOING TO BE IMPORTANT. RECOGNIZING WHAT WE SAID ABOUT LEGISLATING FOLK WISE. NUMBER ONE, BUILDING TRUST IN THE COMMUNITY. VERNELL HAS GIVEN US SOME PRACTICAL WAYS TO DO THAT. THERE IS A HISTORY, IF YOU WILL, IN COMMUNITIES OF COLOR OF MISTRUST FOR VERY GOOD REASON IN CLINICAL TRIAL AND WE HAVE TO CONFRONT THAT. NUMBER TWO, TRANSLATION WHAT IF IT IS THAT WE'RE ABSOLUTELY TRYING TO DO TO ENSURE THAT WE ARE SPEAKING IN A WAY SUCH THAT WE CAPTURE THE IMAGINATION, THE ATTENTION AND THE SHARED ENTHUSIASM FOR THE PROJECT. NUMBER THREE, EDUCATION FOR ALL, AND I DO MEAN FOR ALL, BUT IT'S BIDIRECTIONAL, SO OUR EDUCATION AS INDIVIDUALS AND TO SUSAN'S LAST COMMENT, THEIR EDUCATION OF US IN TERMS OF WHAT IT IS THAT THEY'D LIKE US TO SEE, AND THEN FINALLY, THE BUILD OF THE INFRASTRUCTURE. STARTED A VERY INTERESTING CONVERSATION AROUND THE INFRASTRUCTURE CHALLENGES THAT WE HAVE, AND I THINK THEY DESERVE CLOSER INSPECTION. VERNAL, THANK YOU VERY MUCH FOR YOUR PARTICIPATION, AND THANK YOU. [APPLAUSE] >> I'M NOW GOING TO INTRODUCE KATHY HUDSON, WHO IS DEPUTY DIRECTOR AND ONE OF THE CO-CHAIRS FOR THE ACD PMI WG. >> GOOD MORNING. I'M PLEASE TODAY MODERATE THIS SESSION WHERE WE'RE GOING TO HEAR TWO PRESENTATIONS ABOUT INPUT THAT WE HAVE RECEIVED THAT'S VERY RELEVANT TO TODAY'S DISCUSSION. SO I WANT TO TALK A LITTLE ABOUT WHAT WE ALREADY KNOW ABOUT PARTICIPANT PERSPECTIVES BEFORE I TURN OH THEM. SO AS FRANCIS MENTIONED, THIS IDEA OF A LARGE NATIONAL COHORT TO UNDERSTAND GENETIC AND ENVIRONMENTAL BEHAVIORAL CONTRIBUTIONS TO HEALTH AND DISEASE IS NOT A NEW IDEA. AND BACK IN 2004, HE PROPOSED THIS IDEA. AND FOLLOWING THAT PROPOSAL, THERE WAS A SERIOUS CONVERSATION OF THE ISSUES SURROUNDING THE CHALLENGES AND OPPORTUNITIES TO PUT TOGETHER A COHORT BY THE SECRETARY'S ADVISORY COMMITTEE ON GENETICS, HEALTH AND SOCIETY. AND THAT WAS IN 2007. SO WE HAVE MANY YEARS OF EXPERIENCE IN THINKING THROUGH THESE ISSUES. THE SECRETARY'S ADVISORY COMMITTEE MADE A COUPLE RECOMMENDATIONS SPECIFICALLY ABOUT PUBLIC ENGAGEMENT THAT I THOUGHT WOULD BE INTERESTING TO REVIEW AFTER ALL THESE YEARS HAVE PASSED. SPECIFICALLY, THEY RECOMMENDED THAT BEFORE EMBARKING ON A LARGE POPULATION STUDY THAT WE SHOULD ASSESS THE PUBLIC'S WILLINGNESS TO PARTICIPATE IN SUCH AN EXTENSIVE ENDEAVOR, AND FURTHER THAT THE SECRETARY SHOULD ENSURE THAT PUBLIC ENGAGEMENT OCCURS THROUGHOUT ALL ACCESS AND STAGES OF THE PROCESS FROM CONCEPTUAL STATION, DESIGN, PLANNING, CONDUCT, ANALYSIS AND DATA REPORTING. SO THIS NOTION OF HAVING PARTICIPANTS DEEPLY ENGAGED IN THE PLANNING AND IMPLEMENTATION AND GOVERNANCE HAS REALLY BEEN WITH US FROM THE BEGINNING. BACK WHEN THE IDEA WAS ORIGINALLY PROPOSED BY THE GENOME INSTITUTE, THERE WAS FUNDING THAT WAS PROVIDED AND I THINK IT WILL BE INTERESTING TO COME BACK AND HAVE SOME CONVERSATIONS ABOUT WHAT KIND OF FUNDING DO WE WANT TO HAVE ONGOING THROUGH THE COHORT TO LOOK AT PUBLIC ENGAGEMENT, SOCIAL SCIENCE, BEHAVIORAL, LEGAL ISSUES AND THE LIKE. BUT BACK THEN, THERE WAS FUNDING PROVIDED BY THE GENOME INSTITUTE SPECIFICALLY TO LOOK AT PUBLIC ATTITUDES ABOUT PARTICIPATION IN A LARGE NATIONAL COHORT, AND SPECIFICALLY IN 2006 TO 2008, THERE WAS QUITE AN EXTENSIVE BODY OF WORK THAT WAS DONE BOTH QUALITATIVELY AND QUANTITATIVELY TO UNDERSTAND ATTITUDES. PHASE TWO OF THAT WAS DONE BETWEEN 2010 AND 2013. AND MUCH OF THAT WORK HAS BEEN PUBLISHED AND IS AVAILABLE FROM YOUR CONSIDERATION, AND WE CAN POST THAT ON THE PMI WEBSITE. IN ADDITION, THERE WAS WORK DONE SPECIFICALLY TO LOOK AT VETERANS' ATTITUDES AND THAT WAS IMPORTANT IN FORMING THE BASIS FOR THE CONSENT AND AGREEMENTS BETWEEN THE VETERANS' ADMINISTRATION AND THEIR MILLION VETERANS PROJECT. SO THERE'S AN EXTENSIVE BODY OF WORK THAT WE CAN NOW SORT OF BRING FORWARD INTO 2015, AND THINK ABOUT HOW HAVE THINGS CHANGED SINCE THIS INITIAL GROUNDWORK RESEARCH WAS UNDERTAKEN, AND HOW CAN THAT INFORM OUR STRATEGIES IN MOVING FORWARD. SO WE'RE GOING TO HAVE TWO SPEAKERS IN THIS SESSION. FIRST WE'RE GOING TO HEAR FROM BENS BONHAM WHO'S GOING TO TALK ABOUT WHAT WE HEARD FROM THE COMMUNITY IN RESPONSE IT TO A REQUEST FOR INFORMATION TRAVIS RECENTLY POSTED AND CLOSED, SPECIFICALLY ASKING QUESTIONS ABOUT STRATEGIES TO ADDRESS COMMUNITY ENGAGEMENT AND HEALTH DISPARITIES, AND THEN WE'RE GOING TO HEAR FROM DAVID KAUFMAN, ALSO FROM THE NATIONAL HUMAN GENOME RESEARCH INSTITUTE, WHO'S GOING TO PRESENT A VERY INTERESTING RESULT FROM A NATIONAL SURVEY THAT WE CONDUCTED THROUGH THE FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH OF REPRESENTATIVE SAMPLE OF AMERICANS ASKING THEM WHAT THEIR VIEWS ARE ABOUT HOW EXCITING A COHORT WILL BE, AND THEIR WILLINGNESS TO PARTICIPATE IN SUCH A COHORT AND THEIR CONCERNS ABOUT THAT. SO I'M GOING TO START WITH VENCE, WHO IS RIGHT HERE, AND THEN WE'LL TURN TO DAVE AND HAVE AN INTERESTING CONVERSATION. VENCE. >> SO GOOD MORNING. ON BEHALF OF THE TEAM, I'M PLEASED TO PRET TO YOU TODAY THE RESPONSES WE RECEIVED FROM THE PUBLIC WITH REGARDS TO THE TWO AREAS THAT DR. HUDSON IDENTIFIED. ONE RELATED TO WHAT ARE POTENTIAL STRATEGIES HA WE CAN HA WE CAN USE TO INCREASE THE DIVERSITY OF THE COHORT, AND SECOND, WHAT ARE THE TRANSFORMATIVE OPPORTUNITIES TO USE THE NATIONAL COHORT TO UNDERSTAND AND ADDRESS HEALTH DISPARITIES. SO THE REQUEST FOR INFORMATION WENT UP ON MAY 30TH AND CLOSED THREE WEEKS LATER. WE RECEIVED 69 RESPONSES THAT WERE SUBSTANTIVE. FROM 23 DIFFERENT STATES AND 44 DIFFERENT CITIES, AS WELL AS TWO INTERNATIONAL RESPONSES AND SIX THAT ARE UNKNOWN. SO YOU SEE HERE THERE WAS A DIVERSITY OF THE AREAS OF THE COUNTRY THAT WE RECEIVED RESPONSES FROM. WHICH INCLUDE RESEARCHERS, GENERAL PUBLIC AND VARIETY OF DIFFERENT INFORMATION. INDIVIDUALS WITHIN THE GENERAL PUBLIC ACROSS OUR COUNTRY. I'M GOING TO START BY FOCUSING IN ON ISSUES THAT WE PROVIDED INFORMATION ABOUT COMMUNITY ENGAGEMENT STRATEGIES TO INCREASE THE DIVERSITY OF THE NATIONAL COHORT. AND WE HAD FIVE QUESTIONS THAT WE FOCUSED ON. ONE WAS FACTORS AND INCENTIVE ITS FOR PARTICIPATION IN THE NATIONAL COHORT. THE SECOND, COMMUNITY ENGAGEMENT STRATEGIES AND PARTNERSHIP OPPORTUNITIES WITH THE NATIONAL COHORT, BARRIERS TO PARTICIPATION IN THE NATIONAL COHORT, AND STRATEGIES TO ADDRESS THOSE BARRIERS. AND WAYS TO AVOID STIGMATIZATION OF POPULATIONS WITH THE NATIONAL COHORT, AND SAFEGUARDS TO ASSURE NET POSITIVE POTENTIAL OF THE PRECISION MEDICINE INITIATIVE AND THE NATIONAL COHORT PARTICIPATION. THERE WERE A NUMBER OF COMMON THEMES THAT WERE IDENTIFIED, AND THE MEMBERS OF OUR TEAM WENT THROUGH AND READ EACH OF THE RESPONSES, TWO INDIVIDUALS REVIEWING EACH TO IDENTIFY COMMON THEMES, AND THEN EACH GROUP CAME TOGETHER TO EXPLORE AND TO MAKE A CONSENSUS OF WHAT WERE THE COMMON THEMES THAT WE SAW RELATED TO THE RESPONSES. WITH REGARDS TO COMMUNITY ENGAGEMENT STRATEGIES, WE IDENTIFIED NINE COMMON THEMES THAT WE WILL PRESENT TO YOU TODAY. FIRST, AND YOU'VE ALREADY BEEN HEARING THIS HAD MORNING, WHICH IS ARE INTERESTING, YOU'RE GOING TO, I THINK, HEAR THROUGHOUT THE DAY A NUMBER OF THE SAME THEMES, AND AGAIN, THAT QUESTION, HOW DO WE TAKE THAT AND REALLY MAKE STRATEGIES TO ADDRESS THOSE ISSUES. MEANINGFUL ENGAGEMENT OF COMMUNITIES AND CONTINUOUS COMMUNICATION, TRANSPARENCY, PARTNERSHIP, PRIVACY PROTECTION, EDUCATION, AND AGAIN, THIS IS BOTH EDUCATION OF THE PUBLIC AS WELL AS HEALTHCARE PROVIDERS, REMOVAL OF BARRIERS OF PARTICIPATION, STRATEGIES OF THAT, ACTIVE GOVERNANCE AND OVERSIGHT, AND TRUST, AND TRUSTWORTHINESS. SO I'M GOING TO GO THROUGH AND IDENTIFY A FEW THEMES WHERE I WANT TO FOCUS A LITTLE MORE DEPTH AND PROVIDE YOU ACTUAL QUOTES FROM RESPONDENTS. AND THESE QUOTES ARE EXAMPLES THAT ARE REALLY REFLECTIVE OF THINGS THAT WE HEARD FROM A NUMBER OF THE RESPONDENTS, BUT I'VE IDENTIED A FEW AS ILLUSTRATIVE OF THE THEMES. FIRST RELATED TO ENGAGEMENT. MEANINGFUL INVOLVEMENT OF COMMUNITY MEMBERS FROM A VERY EARLY STAGE IN THE DEVELOPMENT OF AIMS, PROCEDURES, ANALYSIS, COMMUNICATION OF RESULTS. COMMUNICATION. THE MAJOR COMPONENT OF REASSURANCE OF THE POSITIVE BENEFITS OF THIS WILL BE CONSTANT COMMUNICATION, ING LISTENING, EDUCATION AND DIALOGUE, INVOLVING PEOPLE WHO ARE RESPECTED AND TRUSTED BY THE COMMUNITY. TRANSPARENCY. THIS PROJECT MUST OPERATE WITH THE HIGHEST LEVEL OF TRANSPARENCY, POSSIBLE INCLUDING FREQUENT PROJECT UPDATES TO KEY STAKEHOLDERS. AND PARTNERSHIP. BUILD NATIONAL AND LOCAL ACTION BOARDS WHO WILL PARTNER EQUITABLY WITH RESEARCHERS. THIS ISSUE OF COMMUNITY BOARDS CAME UP TIME AND TIME AND AGAIN IN THE RESPONSES THAT WE RECEIVED, THAT THERE NEEDS TO IT BE A STRUCTURE IN PLACE TO PROVIDE FOR CONTINUE ITINING COMMUNITY ENGAGEMENT. ONE OF THE QUOTES WE ARTICULATED ABOUT ABOUT THE ISSUES OF BENEFIT, MAKING SURE THAT THE BENEFITS OF PARTICIPATION IN NATIONAL COHORT ARE ARTICULATED TO COMMUNITIES. FOR PEOPLE FROM HISTORICALLY UNDER DIDSERVED COMMUNITIES TO PARTICIPATE, THIS MUST BE RELEVANT TO THEIR LIVES. THE ONLY WAY FOR THAT TO BE TRUE IS PARTICIPATION TO BE AUTHENTICALLY INITIATED, DESIGNED, CONDUCTED, ANALYZED, AND COMMUNICATED WITHIN THE COMMUNITIES, WITH MEMBERS OF THE COMMUNITY AS TRUE LEADERS AND FACILITATORS. YOU SEE THESE COMMON THEMES HERE THAT ARE RELATED TO PARTICIPATION AND GOVERNANCE. OTHER STRATEGIES TO IT ADDRESS BARRIERS TO PARTICIPATION INCLUDED THE ISSUE OF EDUCATION, ENSURE MATERIALS ARE AVAILABLE, LITERACY IN MULTIPLE LANGUAGES AND MULTIPLE MEDIUM, DEVELOP ADDITIONAL STRATEGIES TO EDUCATE AND ENGAGE NON-ENGLISH SPEAKING PARTICIPANTS AND THOSE OF LOW GENERAL LITERACY. SO THIS ISSUE OF HOW DO YOU COMMUNICATE INFORMATION SHOULD NOT BE ONE SIZE THAT FITS ALL, BUT A VARIETY OF DIFFERENT WAYS TO IT REACH DIFFERENT TYPES OF COMMUNITIES. THERE WILL BE VARIATION AMONG COMMUNITIES IN TERMS OF EXISTENCE, ELECTRONIC MEDICAL RECORDS, ACCESS TO VARIOUS MODELS OF MOBILE PHONE TECHNOLOGY. CONSIDER ALTERNATE METHODS FOR PATIENT ENTERED DATA. CERTAIN RURAL COMMUNITIES, CERTAIN TYPES OF COMMUNITIES WHERE THEY HAVE THE SAME ACCESS TO THE MHEALTH TECHNOLOGIES OR THE TYPES OF ELECTRONIC RECORDS THAT MAY BE IN THE LARGER HEALTHCARE SYSTEMS. SO THE QUESTION IS, HOW DO WE MAKE SURE THAT IT'S AVAILABLE FOR EVERYONE. THEN ENSURING THAT THING ARE COVERED BY THE RESEARCH STUDY COULD BE A MECHANISM TO FACILITATE PARTICIPATION IN RESEARCH. HA THERE ARE STRUCTURAL BARRIERS PARTICULARLY FOR THOSE OF LOWER INCOME AND FROM SOME COMMUNITIES IN PARTICIPATION AND WHAT ARE THE STRATEGIES THAT WILL PULL INTO PLACE TO MAKE SURE THEY CAN PARTICIPATE IN THE NATIONAL COHORT. SO IT'S BEEN TALKED ABOUT ALREADY FOR THIS FIRST HOUR THIS MORNING. IT WAS A MAJOR THEME, I WOULD SAY IT WAS THE MAJOR THEME OF THE 69 RESPONSES THAT WE RECEIVED, IS THIS ISSUE OF TRUST AND TRUSTWORTHINESS OF RESEARCHERS AND OF THE NATIONAL COHORT ADMINISTRATION. TRUST IS PARTICULARLY CRITICAL GIVEN THE UNFORTUNATE LEGACY WITHIN MEDICAL RESEARCH WHERE PARTICIPANT RIGHTS HAVE BEEN NOT EQUALLY PROTECTED. TRUST REQUIRES TIME AND EFFORT TO DEVELOP BUT IT'S EASILY LOST. I REALLY WANT TO FOCUS IN, WE SAW HAD IT QUOTE, I PARTICULARLY WAS INTERESTED IN THIS LAST STATEMENT THAT TRUST IS EASILY LOST AND HIGHLIGHTING THAT AS ONE OF THE THEMES IDENTIFIED FROM THE RESPONDENTS. SO NOW I'M GOING TO SHIFT AND FOCUS ON WHAT WAS IDENTIFIED AS RESEARCH OPPORTUNITIES TO ADDRESS OUR UNDERSTANDING OF HEALTH DISPARITIES RECEIVED FROM THE INFORMATION FROM THE RESPONDENTS. HERE WE ALSO HAD FIVE QUESTIONS THAT WE ASKED RESPONDENTS TO PROVIDE INFORMATION FOR NIH. ONE WAS REGARDING PRIORITY HEALTH DISPARITIES RESEARCH QUESTIONS TO BE ADDRESSED BY THE PMI, OPPORTUNITIES TO STUDY VARIOUS TYPES OF DETERMINANTS OF HEALTH WITH THE COHORT, AND OBTAINING NEW SCIENTIFIC KNOWLEDGE. WHAT DO DIFFEREN ARE DIFFERENT TYPES OF OF KNOWLEDGE POTENTIALLY THAT COULD BE RECEIVED THAT WOULD BE VALUABLE IN UNDERSTANDING DISPARITIES, AND NOVEL METHODS FOR GATHERING DATA ON HEALTH DISPARITIES, AND WAYS TO ANALYZE THE DATA THAT WE MAY NOT BE DOING ON A REGULAR BASIS TODAY. AGAIN WE HAD A NUMBER OF COMMON THEMES, AND THESE THEMES WERE RELATED TO IT THE TYPES O TO THE TYPES OF STUDIES AVAILABLE THAT ARE AVAILABLE OR THAT COHORT COULD ACTUALLY MOVE FORWARD. SO THERE ARE A NUMBER OF AREAS WHERE THERE WERE RESEARCH OIES IDENTIFIED. I'M NOT GOING TO GO THROUGH AND READ THEM ALL, BUT YOU SEE HERE THERE WAS A DIFFERENT AREA OF TYPES OF SCIENCE THAT COULD ACTUALLY BE CONDUCTED WITH THE NATIONAL COHORT THAT MAY HELP US BETTER UNDERSTAND AND ADDRESS HEALTH DISPARITIES WITHIN OUR COUNTRY. SO I WILL AGAIN FOCUS IN ON SEVERAL THEMES WITH MORE DEPTH AND WITH QUOTES FROM THE RESPONDENTS. FIRST MULTIDISCIPLINARY STUDIES. STUDY THE MULTIPLE DETERMINANTS OF HEALTH AND THEIR INTERACTIONS: PERSONAL, SOCIAL, ECONOMIC, ENVIRONMENTAL FACTORS, DISEASE RISK, DISEASE MECHANISM AND INDIVIDUAL RESPONSES TO THERAPY. SOCIAL AND BEHAVIORAL STUDIES. CRITICAL TO INCLUDE CAREFUL, VALID AND ROBUST MEASURES OF SOCIAL FACTORS ACROSS THE LIFE COURSE, INCLUDING SOCIOECONOMIC, PSYCHOSOCIAL, AND ENVIRONMENTAL CONDITIONS. GENOMIC STUDIES. WHAT ARE THE GENETIC FACTORS, PROGRESSION OF HYPERTENSION, CHRONIC KIDNEY DISEASE, AND OTHER CHRONIC DISEASES? AND HEALTH LITERACY, WHICH WAS AN INTERESTING AREA WITH REGARDS TO RESEARCH OPPORTUNITIES. WHAT NEW LITERACY APPROACHES WILL BE NECESSARY TO ENSURE THAT PATIENTS AND FAMILIES UNDERSTAND PRECISION MEDICINE? WILL THESE VARY WITHIN SUBPOPULATIONS? SO OTHER RESEARCH OPPORTUNITIES THAT WERE IDENTIFIED AND EXPLORED IN A NUMBER OF THE THEMES INCLUDES THE IMPORTANCE THAT THIS NATIONAL COHORT HAVE THE ABILITY TO STUDY DIFFERENCES BASED ON SEX, RACE AND ETHNICITY ASCII ELEMENTS WHEN DEVELOPING RESEARCH QUESTIONS. I WANT TO HIGHLIGHT, WE RECEIVED A NUMBER OF COMMENTS ABOUT THE EXTREME IMPORTANCE THAT THE COHORT BE DESIGNED IN A WAY THAT WE CAN LOOK AT SEX DIFFERENCES AND CONDUCT RESEARCH TO URSTAND SEX DIFFERENCES IN HEALTH, AND THAT WAS IDENTIFIED BY A NUMBER OF THE RESPONSE DENTS. THE ISSUE OF THE PRECISION MEDICINE INITIATIVE BEING ABLE TO BE AN OPPORTUNITY TO BE A LABORATORY OF RESEARCH ON HOW TO BEST RECRUIT AND ESTABLISH THE PARTICIPATION OF INDIVIDUALS WAS IDENTIFIED. THE PRECISION MEDICINE INITIATIVE COHORT PROVIDES AN OPPORTUNITY TO IDENTIFY AND TEST STRATEGIES TO OVERCOME STUDY PARTICIPATION BARRIERS. AND FINALLY, THAT THE COHORT PROVIDES AN OPPORTUNITY TO EXAMINE THE NEIGHBORHOOD FACTORS THAT CONTRIBUTE TO HEALTH DS. THE NEIGHBORHOOD FACTORS MEANING SOCIAL AND ENVIRONMENTAL FACTORS OF WHERE PEOPLE LIVE AND HOW THAT INFLUENCES HEALTH AND DISEASE AND HOW DOES THAT CONNECT WITH THE OTHER INFORMATION THAT'S COLLECTED WITH THE NATIONAL COHORT. SO AS A FINAL QUOTE WITH REGARDS TO THE RESEARCH OPPORTUNITIES WITH THE NATIONAL COHORT TO ADDRESS AND UNDERSTAND DISPARITIES, I WILL LEAVE YOU WITH THIS: ADOPT A MULTILEVEL SYSTEMS APPROACH WHEN ANALYZING THE PMI DATA IN ORDER TO FULLY UNDERSTAND THE ROOT CAUSES OF INEQUITIES. THE INTERACTIONS BETWEEN THOSE CAUSES. FURTHER TMI DATA COULD BE ALIGNED WITH OTHER DATASETS, INCLUDING PUBLIC HEALTH DATA, COMMUNITY HEALTH NEEDS ASSESSMENT, ELECTRONIC HEALTH RECORD DATA, TO CREATE A KREE AN EVEN FULLER PICTURE OF THE SYSTEMS THAT GIVE RISE TO AND PERPETUATE HEALTH AND EQUITIES. SO I WANT TO LEAVE YOU WITH SIX TAKE-HOME MESSAGES THAT WE IDENTIFY FROM THE REVIEW OF THE RESPONSE. FIRST, BUILD TRUST. GENUINE COMMUNITY ENGAGEMENT IS NECESSARY THROUGHOUT THE DESIGN, DEVELOPMENT AND IMPLEMENTATION. TRANSPARENCY, COMMUNICATION IS CRITICAL FOR A SUSTAINABLE COHORT. TRANSPARENCY CAME UP IN THE COMMENTS IN A NUMBER OF DIFFERENT WAYS IN THIS IMPORTANCE OF MAKING SURE THAT THE PARTICIPANTS UNDERSTAND THE PROCESS AND HOW THIS COHORT IS OPERATING, WHAT KIND OF RESEARCH IS BEING CONDUCT AND RETURNING INFORMATION TO INDIVIDUALS, SO THAT ISSUE OF TRANSPARENCY WAS A MAJOR THEME. BENEFIT OF PARTICIPATION. IT'S IMPORTANT OF COMMUNICATING THE BENEFIT INFORMATION COMING BACK TO THE PARTICIPANTS, IT'S VERY IMPORTANT. PRSHIP. FORMAL AND INFORMAL ONGOING COMMUNITY ENGAGEMENT WITH COMMUNITIES, AGAIN THIS ISSUE OF GOVERNING STRUCTURE, COMMUNITY BOARDS, WAS A THEME THAT WE RECEIVED WITHIN THE RESPONSES. AND COMMUNITIES ARE DIVERSE. THEY'RE NOT MONOLITHIC. PARTNER EARLY AND EQUITABLY WITH COMMUNITIES BUT RECOGNIZE THAT EACH COMMUNITY IS DIFFERENT AND HOW WE ENGAGE AND RECRUIT INDIVIDUALS IN DIFFERENT COMMUNITIES MAY BE DIFFERENT. AND THAT IS IMPORTANT TO RECOGNIZE. AND FINALLY, WITH REGARDS IT TO COHORT DESIGN, INCORPORATE WITHIN THE COHORT DESIGN THE ABILITY TO INVESTIGATE MULTIPLE DETERMINANTS OF HEALTH. SO NOT JUST LOOK AT ONE TIME OF DETERMINANT, BUT TO EXPLORE THEM TOGETHER AND THE RICHNESS OF THE COHORT IS THE ABILITY TO DO THAT. I WANT TO ACKNOWLEDGE MY COLLEAGUES, THE TEAM THAT HAS BEEN WORKING OVER THE SUMMER VERY HARD AND MOVING VERY QUICKLY THAT HELPED TO DEVELOP THIS RFI THAT WAS PRESENTED ON MAY 30TH TO THE PUBLIC. AND OVER THE LAST WEEK, HAVE ANALYZED THIS DATA TO HELP IDENTIFY THESE THEMES. THESE INDIVIDUALS ARE FROM VARIOUS INSTITUTES HERE AT NIH. IT'S BEEN AN HONOR TO PRESENT ON BEHALF OF THEM TODAY. BUT I DON'T WANT O WANT TO CLOSE WITHOUT THANKING THOSE INDIVIDUALS THAT TOOK THE TIME AND PROVIDED DETAILED RESPONSES TO 10 DIFFERENT QUESTIONS THAT HELP US AS WE MOVE OF FORWARD IN DEVELOPING THIS NATIONAL COHORT. SO I WANT TO ACKNOWLEDGE AND THANK THE RESPONDENTS, AND I BELIEVE THAT THE ACD WORKING GROUP WILL HAVE SOME VERY RICH DATA FROM THE RFI THAT WILL BE HELPFUL AS WE MOVE FORWARD IN DESIGNING THE NATIONAL COHORT. THANK YOU. [APPLAUSE] >> I THINK WE'LL HOLD QUESTIONS UNTIL THE END, WE'RE RUNNING A LITTLE BEHIND. I WANT TO BRING UP DAVE KAUFMAN, WHO'S GOING TO PRESENT THE VERY NEW RESULTS FROM OUR NATIONAL SURVEY SUPPORTED BY THE FOUNDATION FOR THE NIH. >> THANKS, KATHY. IT'S REALLY AN HONOR TO BE ABLE TO PRESENT THESE DATA TO YOU THAT ARE THE WORK OF SEVERAL PEOPLE ON THE PMI TEAM, SO LET'S GET STARTED. WE WANTED TO DO A NATIONWIDE SURVEY OF ADULTS TO GET A HANDLE ON SORT OF HOW PEOPLE FEEL GENERALLY ABOUT THE IDEA OF THIS COHORT, WHETHER OR NOT THEY'D BE WILLING TO PARTICIPATE, SOME OF THEIR FEELINGS ABOUT THE COHORT AND ASKING ABOUT SOME EXAMPLES OF STUDY DESIGN. SO THE FOUNDATION FOR NIH WAS A FANTASTIC PARTNER AND INITIATED THIS SURVEY AND WAS JU GENEROUS ENOUGH TO SHARE THE DATA WITH US TO PRESENT OW. SO THE SURVEY WAS ADMINISTERED ONLINE BY THE COMPANY GFK. I CAN TELL YOU MORE IF YOU'RE INTERESTED ABOUT THEIR SAMPLING STRATEGY AND WHY WE CHOSE THEM. BASICALLY THEY GET A PRETTY NICE REPRESENTATIVE SAMPLE OF PEOPLE TO TALK TO. THE SURVEY WAS IN THE FIELD VERY RECENTLY SO THE DATA ARE ONLY A COUPLE WEEKS OLD. WE FIELDED THE SURVEY IN BOTH SPANISH AND ENGLISH AND OVERSAMPLING BOTH BLACK NON-HISPANICS AND HISPANIC PARTICIPANTS, AND WE WOUND UP WITH 2600 U.S. ADULTS WHO PARTICIPATED, MEDIAN TIME TO COMPLETE THE SURVEY WAS 21 MINUTES AND WE GOT A RESPECT AL RESPONSE RATE OF 57%. I DON'T WANT TO SPEND A TON OF TIME ON THIS SLIDE BUT WANTED TO GIVE YOU A LITTLE BIT OF A FLAVOR FOR THE DEMOGRAPHICS OF WHO PARTICIPATED. HERE IS OUR SURVEY PARTICIPANTS AND COMPARED TO THE U.S. CENSUS IN 2010, AND YOU CAN SEE WITH RESPECT TO GENDER, WE DID WELL. HERE YOU SEE THE DIFFERENCE IN OUR OVERSAMPLE AND THE U.S. CENSUS, THE SAMPLE WAS A BIT OLDER THAN THE UNITED STATES GENERALLY, AND PARTICLY WE SHOULD NOTE THAT PEOPLE IN THE LOWEST INCOME BRACKET AND PEOPLE WITH LESS THAN 12 YEARS OF EDUCATION WERE UNDERREPRESENTED, SO WE NEED TO THINK ABOUT THOSE THINGS AS WE LOOK AT SOME OF THE DATA. TO DEAL WITH SOME OF THESE DIFFERENCES WHEN I PRESENT -- WHEN I TELL YOU THAT THE NATION SAID THIS OR THE NATION SAID THAT, WE USE A STATISTICAL TECHNIQUE CALLED WAITING TO TRY TO GET THE NUMBERS TO BE SORT OF WHAT THE U.S. POPULATION LOOKS LIKE, AND I DEFINITELY WON'T TELL YOU MORE ABOUT THAT BECAUSE I WANT YOU TO STAY AWAKE. OKAY. SO WE SHOWED PEOPLE A SHORT DESCRIPTION OF THE STUDY THAT WE TRIED TO MAKE AS UNBIASED AS POSSIBLE AND THEN ASKED THEM BASED ON THE DESCRIPTION, DO YOU THINK STUT DI SHOULD B STUDY SHOULD BE DON E? 79% SAID IT PROBABLY OR DEFINITELY SHOULD BE DONE. LOOKING AT THE RESPONSE ACROSS DEMOGRAPHIC GRAWPS, THE FIRST THING YOU'LL SEE ON THE SLIDE IS SUPPORT IS FAIRLY UNIFORM ACROSS ALL THESE DEMOGRAPHIC GROUPS. WE DO SEE THAT SUPPORT INCREASES WITH EDUCATION. THESE LITTLE RED ASTERISKS RESULT SIGNIFICANCE, WE'RE CONTROLLING FOR ALL THE DIFFERENT VARIABLES YOU SEE HERE, SO IN A REGRESSION MODEL, WE SEE THAT INCREA EDUCATION INCREASES SUPPORT, THE PEOPLE IN THE LOWEST INCOME CAN CATEGORY HAD SIGNIFICANTLY LOWER U.S. SUPPORT FOR THE STUDY, AND PEOPLE IN MORE URBAN AREAS WERE MORE SUPPORTIVE IN GENERAL. WHY DO PEOPLE SUPPORT THE STUDY? A COUPLE REASONS. 80% AGREED THE WORK IS IMPORTANT TO DO. 86% AGREED THAT WITH SORT OF -- THE GOAL OF THE STUDY COULD BE REACHED TO LEAD TO IMPROVED HEALTHCARE. SO PEOPLE SUPPORT THE STUDY BUT WOULD THEY TAKE PART? AGAIN BASED ON THE DESCRIPTION, WOULD YOU TAKE PART IF IT YOU WERE ASKED? IT 54% OF PEOPLE SAID THEY PROBABLY OR DEFINITELY WOULD TAKE PART, 16% SAID THEY DEFINITELY WOULD NOT. AGAIN LOOKING AT THE ANSWERS TO THAT QUESTION ACROSS DEMOGRAPHIC GROUPS, WE SEE NOT UNIFORM -- NOT COMPLEELY UNIFORM BUT FAIRLY UNIFORM WILLINGNESS ACROSS DEMOGRAPHIC GROUPS, AND THIS IS BOTH DEFINITELY AND PROBABLY WILL PARTICIPATE. WE SEE HISPANICS WERE SIGNIFICANTLY MORE LIKELY TO SAY THEY WOULD PARTICIPATE AND WITHIN HISPANICS, THE PEOPLE WHO TOOK THE SURVEY IN SPANISH, THERE WERE 255 OF THEM, WERE ALL MORE LIKELY TO PARTICIPATE. AGAIN THE TREND WITH EDUCATION, MORE LIKELY TO PARTICIPATE. AND HERE'S SOMETHING THAT WE'VE NOT SEEN BEFORE AS THE OLDER PARTICIPANTS ARE SIGNIFICANTLY LESS LIKELY TO IT PARTICIPATE AS WELL. JUST BEFORE I GO ON, AS WE SORT OF THINK ABOUT THE TALKS WE'VE HEARD ALREADY, IT'S -- I'M NOT NAIVE ENOUGH TO THINK THAT JUST BECAUSE PEOPLE SAY THEY'RE WILLING TO DO SOMETHING MEANS THAT THEY'RE GOING TO DO IT. OBVIOUSLY BRIDGES NEED TO BE BUILT AND THOSE BRIDGES NEED TO BE BILTD BY US, BOOTS NEED TO BE ON THE GROUND, BUT I THINK WHAT THIS SHOWS US IS THAT THE NOTION THAT ANY PARTICULAR GROUP OF PEOPLE SIMPLY WON'T PARTICIPATE, IS NOT WILLING, IS INCORRECT. SO WHY WOULD PEOPLE TAKE PART IN THE STUDY? WHAT'S THEIR MOTIVATION? 82% OF PEOPLE SAID IT WOULD BE INTERESTING TO RECEIVE THE RESULTS OF THE STUDY. AND 62% SAID THEY WOULD TAKE PART TO HELP ADVANCE HEALTH RESEARCH. ALL TRUISM. THE ONE THING TO NOTE HERE, THERE'S A 20% DIFFERENCE IN THOSE TWO THINGS. SO 1 IN 5 PEOPLE ARE INTERESTED IN THE RESULTS, IT JUST BRINGS TO THE FORE WHAT WE'VE HEARD FROM VANS AND VERNAL THAT BRINGING INFORMATION BACK TO PEOPLE IS GOING TO BE VERY IMPORTANT. WE SEE THAT HERE, WE ASKED HOW IMPORTANT THE FOLLOWING INCENTIVES WOULD BE TO IT PEOPLE. 90% OF PEOPLE SAID THAT THAT WAS SOMEWHAT OR VERY IMPORTANT. MORE IMPORTANT, THEY'RE RECEIVING PAYMENT FOR THEIR TIME. MORE IMPORTANT THAN GETTING HEALTHCARE WHILE PARTICIPATING IN A STUDY. AND MORE IMPORTANT THAN GETTING FREE INTERNET, A FREE FITBIT OR A FREE SMART PHONE. SO GETTING INFORMATION, IMPORTANT. WHAT KINDS OF INFORMATION ARE PEOPLE PARTICULARLY INTERESTED IN? LAB RESULTS, WE TOLD PEOPLE ABOUT CHOLESTEROL AND BLOOD SUGAR MEASUREMENTS. EQUALLY INTERESTING IS GENETIC RESULTS. PEOPLE ARE INTERESTED IN OTHER THINGS, THEIR ANCESTRY, THEIR MEDICAL RECORDS, WATER AND AIR QUALITY, AND I THINK IMPORTANTLY, INFORMATION ABOUT OTHER RESEARCH STUDIES RELATED TO MY HEALTH, WHICH IS SOMETHING THAT DR. COLLINS SOORT OF RAISED AS ANOTHER POTENTIAL BENEFIT OF ROUTING PEOPLE INTO OTHER STUDIES. SO SOME PEOPLE ARE WILLING TO DO THE STUDY, WHAT EXACTLY ARE THEY WILLING TO DO? WE ASKED PEOPLE HOW LONG THEY WOULD BE WILLING TO TAKE PART IN THE STU CAN DI IF THEY ACTUALLY JOINED IT, AND 41% SAID I'M NOT GOING TO JOIN IT, BUT 25%, 1 IN 4, 1 IN 4 SAID THAT THEY WOULD STAY IN FOR 10 YEARS OR MORE. AND 36% SAID FIVE YEARS OR MORE. SO I THOUGHT THAT WAS PRETTY GOOD. I MEAN, WHAT DO I KNOW. SO 75 TO 85% OF PEOPLE SAID THEY WOULD GIVE ALL THESE DIFFERENT KINDS OF INFORMATION TO US. 73% SAID THEY WOULD GIVE A BLOOD SAMPLE TO US. I DON'T QUITE UNDERSTAND THIS ONE, 45% SAID THEY WOULD SHARE THEIR SOCIAL MEDIA INFORMATION, MUCH LOWER THAN ALL THESE. MYSTIFIES ME BECAUSE I DON'T KNOW THAT MUCH ABOUT SOCIAL MEDIA, PU MY UNDERSTANDING IS SOMETHING THAT IT'S ALREADY SHARED, SO WE'LL HAVE TO -- A LITTLE BIT. WE'VE HEARD THAT THERE'S A LOT OF INTEREST IN SORT OF MOBILE DATA COLLECTION. 82%, I THINK, OF PEOPLE HAD EITHER A CELL PHONE OR A SMARTPHONE IN OUR SAMPLE. AND SO WE ASK THOSE PEOPLE HOW OFTEN THEY'D BE WILLING TO ANSWER A TEXT IT OR PROMPT ON THEIR PHONE TO ANSWER QUESTIONS FROM THE STUDY. 60% OF THE PEOPLE SAID THAT THEY WOULD DO THIS AT LEAST ONCE A DAY. WHICH I WAS ASTOUNDED AT BECAUSE I AM IN THIS CATEGORY NEVER. SO I THOUGHT THIS WAS PRETTY AMAZING BECAUSE I CAN'T FIGURE OUT HOW TO RESPOND TO ANYTHING ON MY PHONE. SO WE ASKED A LITTLE BIT ABOUT CONSENT AND DATA SHARING. WE DID A LITTLE EXPERIMENT HERE WERE HALF OF THE PEOPLE IN THE SURVEY WERE WRAN DOMMIZED ONE OF FOUR DIFFERENT CONSENT MODELS. WE SHOW THEM EITHER -- A SHORT DESCRIPTION OF BROAD CONSENT OF A STUDY BY STUDY CONSENT, CONSENT FOR EACH USE OF THE DATA, A MEAN EU WHERE YOU COULD CHOOSE WHAT CATEGORY OF THE -- DID OR A DYNAMIC CONSENT MODEL WHERE YOU COULD USE A WEBSITE TO GO INTO THE STUDY CONSENT AND SHARE THEIR SAMPLES AND INFORMATION UNDER THOSE MODELS. STUDY BY STUDY MENU AND DYNAMICS BOTH ENJOYED ABOUT THE SAME LEVEL OF SUPPORT. BROAD CONSEN WAS DIFFERENCES, PRETTY SURE SIGNIFICANT, WITH BUT ABOUT 8% LOWER. SO WE SHOWED THESE THINGS TO HALF THE PEOPLE. THE OTHER HALF, WE ADDED A STATEMENT THAT SAID THERE'S ALSO GOING TO BE A WEBSITE THAT YOU CAN GO TO SEE EXACTLY WHAT THE STUDY IS DOING. THAT WAS WITH YOUR SAMPLES AND DATA. SO JUST A LITTLE BIT OF ADDED TRANSPARENCY. WITH THE TRANSPARENCY, NO DIFFERENCES. SO BROAD CONSENT SORT OF RAISED UP TO THE LEVEL THE OF THE OTHER MODELS, SO TRANSPARENCY IS GOING TO BE IMPORTANT AND GET YOU A LITTLE BIT, ESPECIALLY IT IF YOU NEED TO DO BROAD CONSENT. I'M NOT SAYING YOU WILL OR WON'T DO BROAD CONSENT BUT THESE AGAIN ARE JUST THOUGHT EXPERIMENTS. SO WE ASKED PEOPLE WHO THEY'D BE WILLING TO SHARE THEIR DATA WITH. RESEARCHERS AT THE NIH FARED NICELY, 44% SAID THEY WOULD SHARE WITH OTHER GOVERNMENT RESEARCHERS, BUT WE SHOULD ACKNOWLEDGE THAT THIS CATEGORY IS EXTREMELY VAGUE AND EXTREMELY BROAD, AND WE'RE SURE IF WE NAME PARTICULAR BRANCHES OR INSTITUTES, WE WOULD SEE DIFFERENT THINGS. ACADEMICS IN THE U.S., 52% WOULD SARE WITH THIS IS A U.S. INDUSTRY SO HALF WOULD SHARE WITH INDUSTRY, AND WE'VE SEEN THIS TIME AND TIME AGAIN, THE LOWEST CATEGORY SHARING WITH ACADEMICS ABROAD. THAT'S AN ISSUE THAT WE'RE GOING TO HAVE TO LOOK AT. JUST ONE QUICK THING BEFORE -- I'M AN NICH RESEARCHER, PATTING MYSELF ON THE BACK. BEFORE WE GET TOO EXCITED ABOUT THIS, I THINK THE THING WE NEED TO REALIZE IS THAT PEOPLE ARE PUTTING MAYBE MORE FAITH IN NIH RESEARCHERS, THAT MOSTLY MEANS PEOPLE HAVE HIGHER EXPECTATIONS FOR US AND WE'RE GOING TO NEED TO MEET THOSE. SO WE CAN'T REST ON ANY LAURELS, IF THERE ARE ANY TO REST ON. WE ALSO ASKED PEOPLE IF THEY'D BE WILLING OH SHARE THEIR INFORMATION AND RESEARCH RESULTS ON THE INTERNET TO ANYONE, IF THEIR PERSONAL INFORMATION WAS REMOVED FIRST. 41% OF THE PEOPLE SAID THEY WOULD DO THAT. SO FINALLY JUST A PLI LITTLE BIT ABOUT PARTICIPATION AND PRIVACY. 71% AGREED RESEARCH PARTICIPANTS AND RESEARCHERS SHOULD BE EQUAL PARTNERS IN THE STUDY, AND WE ASKED PEOPLE A LITTLE BIT ABOUT PARTICULAR AREAS WHERE PARTICIPANTS MIGHT BE ABLE TO ENGAGE AND SO THE TOP THREE THINGS PEOPLE THOUGHT P SHOULD BE INVOLVED IN WERE SORT OF GOVERNANCE ORIENTED, HELPING TO DECIDE WHAT KINDS OF RESEARCH ARE APPROPRIATE, WHAT TO DO WITH THE STUDY RESULTS, AND I THINK THIS SORT OF INCLUDES SHORTENING THE FEEDBACK LOOP AND MAKING SURE THAT RESULTS COME OUT FASTER, PEOPLE ARE ABLE TO SORT OF SEE THEM, AND HELPING CHOOSE WHAT RESEARCH QUESTIONS TO ANSWER. AND THERE WAS INTEREST IN THESE OTHER THINGS BUT A LITTLE BIT LESS INTEREST IN SORT OF THE NUTS AND BOTS DESIGNING STUDY, RECRUITMENT AND ANALYSIS, ALL THE STUFF THAT -- WELL, YEAH. WE ALSO ASKED PEOPLE WHAT THEY THEMSELVES WOULD WANT TO DO AND WE SEE THE SAME THING. 35 TO 45% SAID THAT'S BE INTERESTED IN PARTICIPATING IN THOSE ASPECTS OF GOVERNANCE. STILL SIGNIFICANT NUMBERS WOULD BE INTERESTED IN PARTICIPATING IN THESE OTHER ASPECTS AS WELL. FINALLY, A LITTLE BIT ABOUT PRIVACY. WE ASKED PEOPLE ABOUT SEVERAL DESIGN CONCERNS AND I'M NOT GOING TO TALK ABOUT ALL THESE, JUST TO POINT OUT THAT THE MOST IMPORTANT CONCERN TO PEOPLE SOMEWHAT ARE VERY IMPORTANT, THE RESEARCHERS KEEP MY INFORMATION QUIET. 9 IT 2% OF PEOPLE, YOU COULD SEE THAT WAS VERY, VERY IMPORTANT TO MOST PEOPLE. WE ASKED A FEW MORE QUESTIONS ABOUT PRIVACY. TWO THIRDS OF PEOPLE AGREED THE STUDY CAN'T GUARANTEE MY PRIVACY. WE'RE ALL SORT OF AWARE OF -- SEES ALL THESE THINGS IN THE NEWS AND KNOWS THAT THERE ARE NO GUARANTEES, BUT 76% FELT CONFIDENT THE RESEARCHERS WHO USE THE DATA AND SAMPLES WOULD DO EVERYTHING THEY CAN TO KEEP PEOPLE'S INFORMATION EDUCATIONAL. WE HAVE TO -- PEOPLE TRUST US TO TRY AND DO THE RIGHT THING. FINALLY, AT THE END OF THE VAIR, WE ASKED AGAIN EXOWP, NOW THAT WE'VE NEEDLED YOU WITH ALL THESE QUESTIONS, NOW WOULD YOU PARTICIPATE? 56%, SLIGHTLY HIGHER, SAID THEY'D PROBABLY DO IT, ALTHOUGH 19% SAID DEFINITELY NOT. THE INTERESTING THING HERE IS THAT 15% OF PEOPLE WERE SLIGHTLY MORE INTERESTED IN DOING IT AND 15% WERE ACTUALLY LESS INTERESTED IN DOING IT. I THINK THE TAKE HOME THERE IS WHEN YOU HAVE PEOPLE SORT OF THINK ABOUT THE NUANCES OF PARTICIPATING AND SOME OF THE RISK AND THE BENEFITS. BENEFITS. IT HELPS INFORM PEOPLE'S DECISION. THESE HYPOTHETICAL SCENARIOS AND ABSOLUTE NUMBERS ARE NOT ABSOLUTE TRUTHS, BUT WE SEE THE MAJORITY SEEMED TO SUPPORT THE IDEA OF DOING THIS WORK, WILLINGNESS TO PARTICIPATE SEEMS RELATIVELY BROAD, THAT LOWER SES AND OLDER POPULATIONS AS WELL AS OTHER GROUPS MAY NEED SPECIAL ATTENTION AND ENGAGEMENT THAT WE NEED TO GET HEALTH INFORMATION BACK, THE BROAD CONSENT IS ACCEPTABLE IF YOU'RE BEING TRANSPARENT, THAT THERE'S ENTHUSIASM FOR PARTICIPANT INVOLVEMENT, PRIF SEE PROTECTION IS GOING TO BE CRITICAL TO PEOPLE, AND WE THINK THAT ENGAGEMENT IN INFORMATION IS GOING TO HELP PEOPLE MAKE INFORMED DECISIONS ABOUT WHETHER OR NOT THEY'RE GOING TO TAKE PART. AND THANK YOU TO ALL OF MY COLLEAGUES AND CO-WORKERS AND OF COURSE THE SURVEY PARTICIPANTS, WITHOUT WHOM THIS WOULD BE VERY BORING. [APPLAUSE] >> WHY DON'T YOU JOIN US UP HERE. WE HAVE ABOUT -- WE'RE GOING TO GO UNTIL FIVE AFTER 10:00, THEN WE'RE GOING TO HAVE A 15-MINUTE BREAK, SO WE HAVE AN OPPORTUNITY OPPORTUNITY TO TAKE A COUPLE OF QUESTIONS. WE HAVE ONE QUESTION THAT CAME IN VIA TWITTER, WHICH I'LL POSE TO YOU, DAVE, WHICH IS WHY DIDN'T WE INCLUDE A CATEGORY OF LGBT IN OUR SURVEY? I DON'T KNOW THE ANSWER AND I WAS INVOLVED IN YOUR SURVEY. >> WE BLEW IT. >> TONY. >> THIS QUESTION IS FOR DAVE. YOUR VERY LAST QUESTION ABOUT WILLINGNESS TO PARTICIPATE AND THE COHORT STUDY, IF IT YOU BROKE THAT DOWN BY DEM GRAIVES, DID YOU SEE ANY SIGNIFICANT DIFFERENCES GENERALLY AND SPECIFICALLY BY RACE? >> TONY, I DON'T KNOW THE ANSWER ANSWER. I WILL LOOK AT IT AS SOON AS I SIT DOWN AND LET YOU KNOW. IF I HAD TO GUESS, BUT I SHOULDN'T. I'M GUESSING THERE'S PROBABLY NOT HUGE DIFFERENCES OR THE SAME ONES WE SAW, BUT I WILL CERTAINLY LET YOU KNOW. >> IF YOU COULD, THAT WOULD BE GREAT. I DID NOTICE THERE WERE SOME SHIFTS IN TERMS IT OF THE BEFORE AND THE AFTER. >> THE ONE WITH THE SPANISH SPEAKING RESPONDENTS, WHICH I'M INTRIGUED BY. THE OTHER THING I WANT TO SAY TO BOTH VENCE AND DAVID, THEY HAD THESE DATA FOR A VERY SMALL AMOUNT OF TIME AND VERY GENEROUS IN SHARING THEM. PARTICULARLY, DAVE, WE PROBABLY BLEW OUR CHANCES TO GET A GOOD PUBLICATION BY SHARING IT ALL WITH YOU NOW, BUT THAT'S SORT OF IN THE SPIRIT, I THINK, OF THE COHORT. LET ME GO FROM HERE TO HERE AND THEN BACK AGAIN AND THEN I'LL GO TO SHIRIKI. CAN YOU SAY WHO YOU ARE? >> CONSUELO WILKINS, VANDERBILT UNIVERSITY, HARRY MEDICAL COLLEGE. I APPLAUD YOU FOR THE RFI AND OPPORTUNITY TO GET INPUT ON COMMUNITY ENGAGEMENT. I REALIZE THAT TYPICALLY THE R IT FIs ARE OUT A MONTH OR SO. I THINK THE INFORMATION THAT YOU RECEIVED WAS VERY RICH AND ACCURATE, BUT PERHAPS THERE ARE A NUMBER OF US IN THE ROOM AND CERTAINLY OUTSIDE THE ROOM WHO COULD HAVE TOLD YOU ALL THOSE THINGS, AS WELL AS POINTED TO YOU PLACES IN THE LITERATURE TO FIND THAT INFORMATION. I SAY THAT BECAUSE I THINK IF WE'RE REALLY LOOKING FOR INNOVATION AND OPPORTUNITIES TO DO THIS DIFFERENTLY, WE NEED TO ASK PEOPLE WHO PROBABLY WOULDN'T RESPOND TO THE RFI. SO HOW ARE YOU GOING TO GET THAT INPUT FROM PEOPLE WHO MIGHT NOT HAVE EVEN RECEIVED OR HAVE KNOWN ABOUT THE RFI? I THINK THOSE PEOPLE WHO ARE DOING REALLY GOOD WORK, THE ONES FROM UNREPRESENTED GROUPS, WE NEED TO HEAR THEIR VOICES. >> I WOULD AGREE WITH YOUR COMMENT THAT THERE NEEDS TO BE WHAT I WOULD DESCRIBE AS REALLY GRASS ROOTS ENGAGEMENT, AND CONVERSATIONS WITH THE PUBLIC ABOUT THEIR PERCEPTIONS, AND I KNOW THAT THEIR CONVERSATIONS OF THOSE TYPES OF ACTIVITIES GOING ON OVER THE NEXT FEW MONTHS INVOLVING VARIOUS PARTS OF THE GOVERNMENT. >> WHEN THIS ASSOCIATION OF NATIONAL COHORT WAS FIRST, WE DID FOCUS GROUPS AND TOWN HALLS AND COMMUNITY LEADER DISCUSSIONS ACROSS THE COUNTRY AND I THINK WE PROBABLY NEED TO REPEAT AND EXPAND THOSE KINDS OF GRASS ROOTS ENGAGEMENT. OVER HERE? >> NANCY ROACH, COLORECTAL CANCER. I HAD A COUPLE COMMENTS, NOT REALLY QUESTIONS. FIRST ON THE SLIDE WHERE YOU ASKED PEOPLE HOW THEY'D LIKE TO HELP, YOU SAID HELP DECIDE WHAT TO DO WITH THE INFORMATION AND YOU COUCH THAT IN TERMS OF DISSEMINATION, BUT ALSO PARTICIPANTS BRING A VERY DIFFERENT PERSPECTIVE TO THE ANALYSIS AND WRITING OF THE INFORMATION. SO I WOULD ENCOURAGE YOU GUYS TO ALL THINK ABOUT THAT. THE SECOND THING IS, IN TERMS OF COMMUNITY ENGAGEMENT, SCIENCE IS SO SILOED OFF FROM THE AVERAGE PERSON RIGHT NOW. WHEN I SAY I GO TO SEE A LAB, THEY SAY WHAT DOES THAT LOOK LIKE, WHAT DOES THAT MEAN? THERE ARE A LOT OF DIFFERENT REASONS FOR THE SILOS, BUT NEED TO INVITE PEOPLE IN AND ACTUALLY LISTEN TO THEM AND INVEST YOUR TIME IN HEARING WHAT THEY SAY, BECAUSE UNTIL YOU LISTEN TO THEM, THEY'RE NOT GOING TO ENGAGE. I THINK THAT'S VERY IMPORTANT AND I KNOW YOU ALL D KNOW THAT, BUT DOING THAT IS HARD AND UNCOMFORTABLE, AND I DON'T SEE IT HAPPEN VERY OFTEN. >> THANK YOU FOR THOSE COMMENTS. SI, WHY DON'T WE GO TO YOU. >> THANK YOU. SHRIKI KUMANYIKA. UNIVERSITY OF PENNSYLVANIA. I THINK THIS IS A QUESTION FOR YOU, VANS. THE THEMES THAT YOU PULLED OUT STRUCK ME AS MORE PREVENTION AND POPULATION ORIENTED EXPECTATIONS THAT ROOT CAUSES WILL BE IDENTIFIED THAT ENVIRONMENTAL RISKS WILL COME FORWARD, WHEREAS THE OTHER IMAGE, IT'S ALMOST LIKE PMI IS HAVING AN IDENTITY CRISIS BECAUSE THE OTHER IMAGE IS VERY SPECIFICALLY MAGIC BULLET TREATMENT. AND I WONDERED IF YOU COULD COMMENT ON WHAT THAT EXPECTATION THAT CAME OUT IN YOUR DATA ACTUALLY MEAN FOR PMI. >> AND ACTUALLY THAT WAS KIND OF DIRECTLY ADDRESSED WITH SOME OF THE RESPONDENTS THAT YOU NEED TO MAKE SURE THAT THE COHORT IS BOTH EXPLORING GENOMIC AND -- BUT UNDERSTANDING THE CONTEXT OF LIVES AND HOW -- SO ONE OF THE ISSUES WAS A CLEAR THEME WAS THAT COHORT SHOULD BE DESIGNED IN A WAY SO THAT YOU CAN DO BOTH THINGS, SO THAT YOU CAN STUDY THE SOCIAL AND ENVIRONMENTAL CONTEXT OF HEALTH AND DEFERENCES THAT WE SEE IN OUR COUNTRY, SO WE HAVE THIS OPPORTUNITY, SO THAT WAS THE KIND OF MESSAGE THAT WAS THERE, TO MAKE SURE IT'S DESIGNED IN A WAY THAT YOU CAN DO BOTH THINGS. >> WE'RE GOING TO DO LIGHTNING ROUNDS BECAUSE WE HAVE FOUR MINUTES AND FOUR QUESTIONS. >> QUESTION TO DAVE. TO DO GOOD GENETIC IT AND ENVIRONMENTAL STUDY, WE MIGHT HAVE TO USE GIZMOS THAT SENSE THE ENVIRONMENT. DO YOU HAVE ANY DATA FROM THE SURVEY REGARDING PRIVACY CONCERNS AND INFORMATION WE'RE POSITING REGARDING WHETHER THESE GIZMOS WOULD BE ACCEPTABLE AND SUBGROUP OF RESPONSES? >> I THINK OUR DATA IS NOT THE END ALL AND BE ALL ON THIS, BUT WE DID ASK HOW CONCERNED PEOPLE ARE ABOUT PRIVACY OF DIFFERENT THINGS, THEIR MEDICAL FINANCIAL GENETIC INFORMATION, THEIR INFORMATION OFF THEIR MOBILE DEVICES AND FITBITS. CONCERN IS VERY HIGH FOR PRIVACY IN GENERAL. BUT PEOPLE'S CONCERN FOR MOBILE DAY A AND FITBIT DATA WAS ABOUT THE SAME AS FOR GENETIC DATA, I THINK ABOUT 75% OF PEOPLE SAID I HAVE SOME CONCERN ABOUT IT, SO WE'RE GETTING THE WEN FIT OF THE OF THE DOWTD, WE HAVE TO SHOW PEOPLE WE DESERVE IT, THAT'S A NEW THING AND WE'LL HAVE TO REALLY PAY ATTENTION TO IT. >> JUST A COUPLE COMMENTS. I'M DONNA FROM JACKSON STATE UNIVERSITY, JACKSON HEART STUDY. WHAT I WOULD LIKE TO SUGGEST IS THAT THE FUNDING AGENCIES ALLOW FOR COMMUNITY ENGAGEMENT TO REALLY TAKE PLACE. OFTENTIMES WE'RE GIVEN A TIMELINE THAT IS UNREASONABLE BASED ON COMMUNITY TIME. THEY'RE NOT ON OUR TIME. WHEN WE GO TO THEM, WE'RE ON THEIR TIME. AND IT TAKES TIME TO PENETRATE CHURCHES, CHURCHES ARE POLITICAL SYSTEM, YOU HAVE TO PENETRATE THAT CHURCH. ORGANIZATIONS. YOU HAVE TO BE ABLE TO GET INTO THE ORGANIZATIONS. WE'VE BEEN VERY FORTUNATE OVER THE YEARS, WE BUILT A SUSTAIED LONG LASTING TRUSTING RELATIONSHIP THAT HAS BEEN CHALLENGED AT TIMES, BUT WE SEEM TO BE DOING OKAY. ALSO I'D LIKE TO SAY THAT WHEN WE LOOK AT FUNDING, WE LOOK AT CBOs THAT HAVE LONGEVITY AND COMMUNITY ROOTS AND ALLOW THEM FISCAL OPPORTUNITIES ALSO. THEY'RE ALWAYS AT THE MERCY OF OUR UNIVERSITIES OR OTHER ACADEMIC OR MEDICAL INSTITUTION, AND THEY NEVER GET THE DOLLARS THAT THEY NEED TO DO WHAT YOU WANT THEM TO DO IN THE COMMUNITY. SO I URGE THOSE IN CONTROL OF THE DOLLARS TO SERIOUSLY CONSIDER FUNDING CBOs TO MANAGE SOMETHING ON THEIR OWN BECAUSE THEY CAN GET TO FOLKS QUICKER THAN WE CAN. THAT'S IT. THANK YOU. >> THANK YOU VERY MUCH. >> JAME JIM PARRIN, AMERICAN ACADEMY OF PEDIATRICS. JUST CURIOUS IF YOU QUERIED ANYTHING ABOUT ADOLESCENCE WITH OR WITHOUT. BY THE WAY, THEY ARE VERY OFTEN TO SHARE INTERESTING DATA. >> ONE OF THE WAYS -- IT IS A VERY LARGE PANEL OF PEOPLE AND WE SURVEYED A SUBSET OF THEM. AS A CONSEQUENCE, ALL OF THE DID DEMOGRAPHIC INFORMATION AND ACTUALLY A REALLY RICH BODY OF INFORMATION ABOUT THOSE PEOPLE HAVE ALREAD BEEN COULD ELECTED IN ADVANCE SO WE DON'T NEED TO WASTE THEIR TIME OR THE TIME OF THE SURVEY, THE 21 MINUTES, RE-ASKING QUESTIONS AND THAT'S ACTUALLY JERMAINE, I THINK, TO THE LGBT QUESTION THAT THEY HAD A MINUTE TO THINK ABOUT, SO DO YOU WANT TO RESPOND TO SORT OF THAT ADOLESCENCE QUESTION AND LGBT? >> WE DIDN'T ASK SPECIFICALLY ABOUT ADOLESCENCE, WE ASKED ABOUT FOUR QUESTIONS ABOUT CHILDREN IN GENERAL. MY MIND IS A SIEVE, AND SO I DON'T HAVE THE NUMBER OFS IN MY HEAD BUT I'LL BE HAPPY TO TELL YOU WHAT THEY SAID. WITH RESPECT TO THE LGBT, I THINK WE MAY BE ABLE TO GO BACK TO GFK AND ASK THEM WHETHER OUR PATIENTS WERE LGB OR T, AND IF WE GET THAT DATA, WE WILL CERTAINLY DO THE ANALYSIS. IT WE CAN'T, THIS ISN'T THE LAST CHANCE WE HAVE, SO IF WE CAN'T DO IT NOW, WITH WE WILL DO IT IN THE FUTURE. >> THANKS. ANDY, YOU HAVE THE LAST QUESTION. >> I KIND OF WANT TO COMBINE WHAT VINCE SAID AND WHAT DAVE SAID IN THE SENSE THAT TRUST WAS REALLY AN IMPORTANT ISSUE. DAVE IN THE SURVEY, DID YOU ASK IF THESE INDIVIDUALS HAD A MEDICAL HOME? BECAUSE I WONDER IF THE THE DATA WOULD BE DIFFERENT IF YOU SURVEYED THOSE WHO HAD A MEDICAL HOME SO THEY HAD A TRUSTING RELATIONSHIP WITH THE HEALTHCARE SYSTEM IN GENERAL IN SOME WAY, AND WITAND WOULD THAT SKEW THE NUMBERS AT ALL? >> IT'S A GREAT QUESTION. WE'VE GOT LIKE 500 THINGS, YOU ONLY CAN ASK 100. IT GOT LEFT ON THE TABLE SO AGAIN, YOU KNOW, IT'S SOMETHING TO FOLLOW UP ON, ESPECIALLY AS WE FOCUS ON WHAT HOMES WE'RE GOING TO -- WE'LL BE WORKING FROM. >> BECAUSE THAT'S ONE OF THE THINGS WE CAN CONSISTENTLY HEAR IN OUR FOCUS GROUPS AND I THINK IT'S IMPORTANT AS WE DESIGN THE STUDY BECAUSE OFTEN RESEARCH CENTERS ARE KIND OF WHERE YOU GO WHEN YOU HAVE A CRITICAL ISSUE AND THEY'RE NOT YOUR MEDICAL HOME, AS WE TRY TO PULL THEM IN TO PMI, I THINK WILL BE IMPORTANT. >> GREAT. THANKS, ANDY. SO WE ARE GOING TO NOW TAKE A BREAK UNTIL 10:20. PLEASE JOIN ME IN THANKING OUR PANELISTS TODAY. [APPLAUSE] I'M SHRIKI KUMANYIKA, I'M A MEMBER OF THE ACD PMI WG. WE'RE ALL LEARNING HOW TO PRONOUNCE THAT. I THINK THE PURPOSE OF THIS SESSION IS TO REALLY GET MORE INTO THE WEEDS OF WHAT THE PROMISE IS OF THE PMI FOR ANSWERING QUESTIONS RELATED TO HEALTH EQUITY. I THINK WE ALL FEEL IN A VERY GENERAL AND MAYBE STILL ABSTRACT SENSE THAT IT WON'T BE SUCCESSFUL UNLESS IT ADVANCES OUR ABILITY TO ACHIEVE HEALTH EQUITY, SO THIS PANEL IS GOING TO TALK ABOUT WHAT THAT MIGHT ACTUALLY MEAN. WE HAVE THREE PANELISTS, DR. SARAH GEHLERT, PROFESSOR OF ETHNIC DIVERSITY UNIVERSITY OF ST. LOUIS, DR. RICK KITTLES AT THE UNIVERSITY OF ARIZONA CAMPUS SUN TER, AND DR. JAMES PARRIN, IMMEDIATE PAST PRESIDENT OF THE AMERICAN ACADEMY OF PEDIATRICS AND PROFESSOR OF PEDIATRICS AT HARVARD MEDICAL SCHOOL AND THE JOHN ROBINSON AT MASS GENERAL HOSPITAL FOR CHILDREN. SO WHAT WE'RE GOING TO DO IS TRY TO BE AS EFFICIENT AS POSSIBLE, AND ASK EACH SPEAKER TO INTRODUCE HIM OR HERSELF IN TERMS OF PERSPECTIVE ON THIS ISSUE AND AFTER THOSE INTERDID DUCK TRI COMMENTS, WE WILL GO AROUND AND TALK ABOUT THREE SPECIFIC QUESTIONS THAT THE PANELISTS HAVE BEEN ASKED TO ADDRESS. WE'LL TRY TO DO THIS AS QUICKLY AS POSSIBLE WHILE TAKING THE TIME TO FRAME SOME OF THESE ISSUE AND STIMULATE YOUR THOUGHTS ABOUT THEM. THEN WE'LL HAVE 25 OR 30 MINUTES FOR QUESTIONS FROM THE FLOOR. SO I'LL START OFF WITH DR. GEHLERT TO INTRODUCE YOURSELF AND GIVE YOUR PERSPECTIVE. >> OKAY. AS SHIRIKI TOLD YOU, I'M THE E. DESMOND LEE PROFESSOR AT WASHINGTON UNIVERSITY IN ST. LOUIS AND ALSO SERVE ON THE BOARD OF SCIENTIFIC COUNSELORS IN THE HUMAN GENOME RESEARCH INSTITUTE, AND I'M A SOCIAL SCIENTIST BY TRAINING, AND MY PUBLICATIONS FOCUS ON SOCIAL INFLUENCES OF BIOLOGY AND HEALTH OUOUTCOMES, ESPECIALLY INFLUENCES AT THE NEIGHBORHOOD AND COMMUNITY LEVEL OF INFLUENCE, SO I WAS GLAD VANS BROUGHT THAT UP. I'VE WORKED IN HEALTH CAN DISPARITIES FOR ABOUT 20 YEARS AND I WAS PRINCIPAL INVESTIGATOR OF THE CENTER FOR INTERDISCIPLINARY HEALTH CAN DISPARITIES RESEARCH AT THE UNIVERSITY OF CHICAGO, WHICH IS ONE OF THE NATIONAL CANCER INSTITUTE CENTERS FOR POPULATION HEALTH AND HEALTH DISPARITIES, BEFORE I MOVED TO ST. LOUIS, AND MY COLLEAGUES AT THE UNIVERSITY OF CHICAGO, AND I CONTINUE TO STU CAN DI THSTUDY THE DETERMINANTS OF THE CANCER MORTALITY AMONG AFRICAN-AMERICAN WOMEN. AND THE BREAST ONCOLOGISTS ON OUR TEAM, REALIZED THAT EVEN WITH OPTIMAL TREATMENT FOR ALL, THE DESPAIR DI SPAIRT WOULD DECREASE BUT WOULDN'T DISAPPEAR THROUGH THE SOCIAL FACTORS. SO WITH OTHER INVESTIGATORS FROM THE CENTERS FOR POPULATION HEALTH AND HEALTH DISPARITIES, WE DEVELOPED A MULTILEVEL MODEL OF CANCER CAN DISPARITIES THAT INCLUDES SEVEN LEVELS OF INFLUENCE FROM THE BIOLOGICAL GENETICS FROM SMOKING TO SOCIAL RELATIONSHIPS, TO NEIGHBORHOODS, FACTORS LIKE SOCIAL COHESION IN NEIGHBORHOODS, TO INSTITUTIONS OF VARIOUS TYPES SE TOE SIGH AT THE SOCIET AL LEVEL ALL IMPACT HEALTH DISPARITIES. WE FOUND THESE LEVELS INTERACT IN VERY COMPLEX WAYS ACROSS THE LIFE CYCLE. YOU MAY HAVE SEEN AN ARTICLE IN THE NEW PLUS ONE THAT REPORTS LINALINK BETWEEN LIVING IN UNSAFE NEIGHBORHOODS AND SHORTER TELOMERES AND INCREASED RISK OF DEATH, AND THIS IS THE SORT OF AREA IN WHICH WE'RE WORKING. SO THERE'S THE PROMISE OF EXTENDING RESEARCH LIKE THIS BY BRINGING THESE FACTORS TOGETHER IN THE SAME RESEARCH MODELS WITH ADEQUATE SAMPLE SIZES FOR SOME POPULATIONS, WHICH IS WHAT EXCITES ME MOST. AND OVER TIME, I'VE BECOME INCREASINGLY INTERESTED IN POVERTY IN CANCER AND NOW WORK WITH THE ST. LOUIS DEPARTMENT OF HEALTH TO DESIGN INTERVENTIONS FOR WOMEN LIVING IN EIGHT ZIP CODES IN NORTH ST. LOUIS THAT HAVE THE HIGHEST LEVELS OF POVERTY AND THE HIGHEST BREAST CANCER MORTALITY. THESE WOMEN ARE IMPORTANT TO MENTION, I THINK, BECAUSE THEY LACK STABLE SOURCES OF CARE. IF THEY DO HAVE RECORDS, THE RECORDS ARE PROBABLY WITH THE FEDERALLY QUALIFIED HEALTH CLINIC, THEY MAY BE AT SEVERAL EMERGENCY DEPARTMENTS, BUT THESE WOMEN TEND NOT TO HAVE WHAT YOU WOULD REALLY CALL FAIRLY MEDICAL HOMES. AND THEY ALSO FAIL TO HAVE STABLE HOUSING. THEY'RE NOT AFFILIATED WITH ORGANIZATIONS OR WITH ADVOCACY GROUPS, AND THEY LIVE MORE MARGINALLY AND ARE VERY DIFFICULT TO REACH, YET I WOULD LOVE TO HAVE THEM INVOLVED IN THIS INITIATIVE. AND WE CAN TALK ABOUT WAYS OF DOING THAT. I JUST WANT TO POINT OUT THAT THEY'RE NOT UNIQUE, THAT IN THE UNITED STATES -- WELL, IN 2013, 45.3 MILLION RESIDENTS OF THE UNITED STATES LIVE BELOW THE FEDERAL POVERTY LINE. WHICH IS $24,250 FOR A FAMILY OF FOUR, AND MANY OF THE PEOPLE WITH WHOM WE WORK WOULD BE HAPPY TO HAVE THAT KIND OF INCOME. SO JUST REALLY WANT TO MAKE A CASE FOR POVERTY IN THE PMI. THANK YOU. >> GOOD MORNING. MY NAME IS RICK KITTLES. I'M PROFESSOR IN THE DEPARTMENT OF SURGERY AND PUBLIC HEALTH AT THE UNIVERSITY OF OF ARIZONA IN TUCSON. MY RESEARCH FOCUS HAS BEEN ON THE GENETICS OF COMPLEX DISEASES THAT -- [INAUDIBLE] YOU MAY CALL THAT DISPARITIES RESEARCH. EARLY ON, IT WAS FOCUSED MAINLY ON GENETICS, BUT ONE OF THE THINGS I'VE LEARNED IS THAT GENES SHOULD BE PLACED IN CONTEXT, THAT CONTEXT BEING THE ENVIRONMENT, PHYSICAL OR SOCIAL ENVIRONMENT, SO MY FOCUS MAINLY HAS BEEN ON CANCER GENETICS IN PROSTATE CANCER, EXPLORING JEAN ENVIRONMENT INTERACTIONS AND FOCUS ON POPULATION OF AFRICAN DESCENT LIKE AFRICAN-AMERICANS AND BLACK HISPANIC OR BLACK LATINO POPULATIONS, ONE OF THE THINGS THAT I'VE HAD TO DEVELOP IS IN THE USE OF GENETIC ANCESTRY, SO MYSELF AND OTHERS IN THIS ROOM AND OUTSIDE OF THE ROOM HAVE BEEN ACTIVELY INVOLVED IN TRYING TO UNDERSTAND GENETIC ANCESTRY AND THE ROLE GENETIC ANCESTRY PLAYS IN HEALTH AND IN PARTICULAR, HEALTH DISPARITIES. I HAD TO SORT OF DO THAT BECAUSE STUDYING AFRICAN-AMERICANS, ONE QUICKLY UNDERSTANDS THERE'S A LOT OF HETEROGENEITY, A LOT OF STRATIFICATION BECAUSE OF DIVERSE GENETIC BACKGROUND. AND ALSO ENVIRONMENTAL BACKGROUND. AND SO THAT WAS ONE OF THE SORT OF LEADING SORT OF REASONS WHY I INITIALLY STARTED TO STUDY THAT. PRESENTLY I'M IN THE MIDDLE OF A BIG RO1 WHERE WE'RE LOOKING AT SERUM VITAMIN D LEVELS AND MODIFIERS OF VITAMIN D, BIOLOGICAL AND ENVIRONMENTAL MODIFIERS OF CANCER RISK, THIS IS A BIG PROSPECTIVE STUDY WITH 4,000 MEN IN THE CHICAGOLAND AREA. WE HAVE PUBLIC AND PRIVATE HOSPITALS WHERE WE'RE ACTIVELY RECRUITING, AND 60%, OVER TWO THIRDS OF THE MEN ARE MEN OF COLOR, BLACK AND HISPANIC MEN. THE GREAT THING ABOUT THIS PROJECT IS THAT IT ACTUALLY EXPLORES DISPARITIES AS IT RELATES TO PROSTATE CANCER ACROSS ISSUES OF RACE AND ETHNICITY, BUT ALSO SOCIAL STRATA, WITH THE PUBLIC COUNTY HOSPITAL DIFFERENCES AND THE PRIVATE INSTITUTIONS PARTICIPANTS. WE ARE CLEBTING GENETIC AND BIOMARKER DATA, ALSO HAVE ACCESS TO THE EMR DATA FOR THE PATIENTS AND ARE EXPLORING PRESENTLY TREATMENT MODALITIES AND OUTCOMES. SO I SEE THIS PMI AS THE ENORMOUS OPPORTUNITY TO FURTHER ADVANCE OUR UNDERSTANDING IN TERMS OF CAN DISPARITIES, HEALTH DISPARITIES, WHICH FOR THE MOST PART ARE SOCIALLY DETERMINED BUT THERE ARE SOME SPECIFIC BIOLOGICAL COMPONENTS FOR PARTICULAR DISPARITIES THAT ACTUALLY WE SHOULD BE ABLE TO ADDRESS AND I'LL TALK MORE ABOUT THAT LATER. >> THANKS. NICE TO BE HERE. I'M JIM PARRIN. I'M IMMEDIATE PAST PRESIDENT OF THE AMERICAN ACADEMY OF PEDIATRICS WHICH IS AN ORGANIZATION OF 64,000 PEDIATRICIANS, PEDIATRIC SUBSPECIALISTS AROUND THE U.S. I'M ALSO IF H PROFESSOR OF PEDIATRICS AT HARVARD MEDICAL SCHOOL. MUCH OF MY OWN WORK HAS BEEN IN THE AREA OF CHRONIC DISEASE, EPIDEMIOLOGY IN CHILDREN AND THE REAL CHANGE IS IN THAT EPIDEMIOLOGY OVER THE LAST 30 OR 40 YEARS TIME AND THE IMPLICATIONS FOR BOTH CHILDREN AND FAMILIES AND FOR PUBLIC PROGRAMS AND POLICIES IN THAT AREA. I'M REALLY OBVIOUSLY HERE PARTLY TO RECOMMEND THE INCLUSION OF WOMEN OF CHILD BEARING AGE AND CHILDREN AND ADOLESCENTS IN THE PMI COHORT WITH THESE INCREDBLY VALUABLE TO DO THAT. WE KNOW SO MUCH MORE TODAY THAN WE DID A DECADE AGO ABOUT EARLY LIFE INFLUENCES AND THEIR DRAMATIC IMPACT ON CHILDREN'S HEALTH AND DEVELOPMENT OVER TIME, THE FIRST THOUSAND DAYS OF THE CHILD'S LIFE WITH THE THOUSAND DAYS BEGINNING AT INCEPTION. THESE ARE CRITICALLY IMPORTANT TIMES. WE KNOW SO MUCH MORE ABOUT THAT. WE ALSO KNOW MORE ABOUT THE LIFE COURSE ASPECT OF CHILD HEALTH AND DEVELOPMENT AND THE FACT THAT IT'S NOT A SINGLE SPOT IN TIME BUT RATHER AN ACCUMULATION OF EVENTS OVER TIME, POSITIVE AND NEGATIVE EVENTS THAT REALLY DO INFLUENCE BRAIN DEVELOPMENT, RESISTANCE AND RESILIENCE AND RELATED SUCH THINGS. WE ALSO KNOW MUCH MORE ABOUT INCREASING EVIDENCE IN PERINATAL AND EARLY CHILDHOOD AND ADULT CHRONIC HEALTH CONDITIONS INCLUDING HEART DISEASE, PULMONARY DISEASE, DIABETES, CANCER, MANY OF THESE DO HAVE IMPORTANT -- THOUGH WE HAVE INITIAL UNDERSTANDING BUT FRANKLY HAVING THE PMI INITIATIVE WOULD BE EXTRAORDINARILY VALUABLE IN BRINGING TOGETHER A VAST ARRAY OF DATA TO HELP US DEAL WITH THAT. WE HAVE SEEN IN THIS COUNTRY AND ACROSS THE WORLD MAJOR GROWTH IN RATES OF CHRONIC HEALTH CONDITIONS AMONG THE AMERICAS, CHILDREN AND ADOLESCENTS. THIS HAS BEEN PREDOMINANTLY AMONG THE BIG FOUR, WHICH ARE REALLY ASTHMA, OBESITY, CHILDREN'S MENTAL HEALTH CONDITIONS, AND DEVELOPMENTAL CONDITIONS INCLUDING OBVIOUS -- WE'VE HAD A LOT OF GROWTH UNTIL 1980 IN SURVIVAL OF RELATIVELY RARE CONDITIONS LIKE CYSTIC FIBROSIS AND SO FORTH, BUT REALLY SINCE THAT TIME, THEIR RATES HAVE BEEN PRETTY FLAT. THE HUGE GROWTH AM THESE, WHAT WE'RE SEEING TODAY IN THIS COUNTRY IS YOUNG PEOPLE IN THEIR 20s AND 30s ARE ALREADY SUFFERING SUBSTANTIAL HEALTH DISABILITIES WITH LIMITED E, EDUCATION AND QUALITY IF LIFE, AND WE ALSO KNOW NOT WELL ENOUGH THAT THIS POPULATION -- POPULATIONS MORE DISPARATE IN OUR COUNTRY HAVE MUCH HIGHER RATES OF THESE CONDITIONS. WE ALSO UNDERSTAND INCLUDING CHILDREN IS NOT EASY, BUT THEY'RE REALLY IMPORTANT IN COMPLEX ISSUES ABOUT CONSENTING CHILDREN, GETTING THE RIGHT KIND OF CONSENT OVER TIME IN DEVELOPMENTALLY APPROPRIATE WAY, BUT I THINK IT'S IMPORTANT THAT WE'VE HAD EXPERIENCE DOING THAT IN A NUMBER OF IMPORTANT LONGITUDINAL COHORTS. SOME REESE REST PIER TRI ASTHMA COHORTS, PROBABLY MORE THAN ANY OTHERS, AND THERE'S THERE ARE SOME VERY GOOD RESEARCH WHOARS HAVE DONE SUPER WORK IN THE AREA OF COMMUNITY-BASED RESEARCH WHICH IS INCLUDING CHILDREN IN IMAGINATIVE WAYS AND GETTING THE RIGHT KINDS OF CONSENT. I THINK POINT IS, IT CAN BE DONE. THESE ARE NOT INSURMOUNTABLE PROBLEMS, THEY'RE REALLY ACHIEVABLE PROBLEMS. SO WHY ADDRESS DISPARITIES IF THEY'RE TALKING ABOUT CHILDREN AND YOUTH? WELL, FIRST OF ALL, CHILDREN AND YOUTH HAD MORE DISPARITIES IN SENSE OF LANGUAGE, CULTURE, RACE, ETHNICITY, THAN ANY OTHER AGE GROUP IN THE UNITED STATES. I MIGHT ALSO SAY IN TALKING ABOUT IN TALKING ABOUT MHEALTH, THEY ALSO HAVE MORE EXPERIENCE AND CONFIDENCE IN MOBILE TECHNOLOGIES THAN ANY OTHER U.S. AGE GROUP. I'M GOING TO END BY SHARING A COUPLE CLINICAL EXAMPLES WHERE WE CAN DO MUCH BETTER WHEN WE HAD HIGH QUALITY RESEARCH INCLUDING POPULATIONS THAT ARE QUITE DISPARATE. ONE IS ATTENTION DEFICIT HYPERACTIVITY DISORDER, ONE RATHERATHER COMMON CONDITION AMONG AMERICAN KIDS, ALMOST ALL OF THE TRIALS HAVE BEEN DONE IN MIDDLE CLASS WHITE CHILDREN. SO IN FACT, I CAN'T SAY AS A CLINICIAN WHETHER A SIMILAR MEDICATION THAT I PRESCRIBE FOR A CHILD IN DORCHESTER, MASSACHUSETTS THAT COMES FROM AN AMERICAN FAMILY THAT HAS LIMITED RESOURCES IS REALLY GOING TO BE AN EFFECTIVE TREATMENT. I ACTUALLY DON'T HAVE THE DA THE DATA TO SHOW THAT. ANOTHER AREA WHICH I'VE BEEN PARTICULARLY INTERESTED IN PNALLY IS YOU AUTISM, WHERE WE'VE SEEN A HUGE GROWTH AND VERY INTERESTING DATA ABOUT WHETHER THAT GROWTH IN AUTISM CAN -- FIRST OF ALL WHAT IS THE CAUSE OF THAT GROWTH IN AUTISM AND WHERE THE PERINATAL ESPECIALLY ASPECTS OF THAT ARE PROBABLY ABSOLUTELY CRITICAL AND WE CAN DESPERATELY NEED MUCH BETTER DATA ABOUT PERINATAL EXPERIENCES, BUT THE ISSUES OF DISPARITIES IN THE AREA OF AUTISM ARE ALSO QUITE STRIKING BECAUSE AT THIS POINT IN HISTORY, MOST OF THE EVIDENCE WOULD SAY THAT IT'S A RELATIVELY BROAD BASED RATE OF INCREASE OF AUTISM AMONG ALL CLASSES, RACES AND ETHNICITY IN THIS COUNTRY WITH THE EXCEPTION OF LATINOS. SO THANKS VERY MUCH. >> TO THE PANEL FOR REALLY GETTING US OFF TO A GREAT START AT THINKING ABOUT THE ISSUES THAT NEED TO BE ADDRESSED AND THAT THE PMI COULD HELP WITH. I WANTED TO GIVE YOU EACH A CHANCE TO ELABORATE MORE IF YOU HAVE OTHER EXAMPLES ON THE ISSUE OF THE TYPES OF MAJOR HEALTH IT DISPARITIES THAT COULD BE STUDIED PERHAPS ONLY BY THE PMI COHORT, IF YOU WHANT T WANT TO COMMENT MORE GENERALLY ON HOW PMI CAN DO IT AT THE SAME TIME JUST SO WE CAN USE OUR TIME EFFICIENTLY, PLEASE GO AHEAD SO I'LL GIVE EACH OF YOU A FEW MINUTES AND I'LL START WITH DR. KITTLES. >> WELL, IN TERMS OF DISPARITIES OF MORTALITY AMONG UNDERSERVED AND COMMUNITIES OF COLOR, SO HYPERTENSION OBVIOUSLY, CARDIOVASCULAR DISPARITIES AND ALSO OF COURSE CANCER DISPARITIES. SO WE THINK ABOUT HYPERTENSION, WHERE RATES ARE MUCH HIGHER IN AFRICAN-AMERICANS, WE KNOW MEDICATION IS ONE OF THE MOST EFFECTIVE WAYS TO TREAT HYPERTENSION. OF COURSE ANCESTRY AND -- AND DIET, STRESS. BUT I THINK THERE'S SUCH A PLETHORA OF RESPONSES TO HYPERTENSION MEDICATION THAT SOMETHING LIKE THE PMI COULD REALLY HELP TO BETTER UNDERSTAND WHAT THE MOST EFFECTIVE TARGETING AND TREATMENT WOULD BE, AND SO WE WOULDN'T NECESSARILY HAVE TO CONTINUE THIS TRIAL AND ERROR IN TERMS OF TREATMENT. AND THIS GOES ACTUALLY TIES INTO PHARMACOGENETICS, WHICH WE KNOW ENORMOUS DISPARITY FOR A PARTICULAR DRUG RESPONSE. SO WE KNOW BIOLOGY CONTRIBUTES TO DIFFERENCES IN DRUG RESPONSE AND THIS WOULD PROVIDE A GOOD PLATFORM TO REALLY EXPLORE THEM. ANOTHER SORT OF CARDIOVASCULAR DISEASE WOULD BE LIKE HEART -- I THINK THE HISTORY OF -- IN TERMS OF TARGETED SORT OF THERAPY FOCUSED SPECIFICALLY FOR AFRICAN-AMERICANS IS AN EXAMPLE SORT OF WHERE ANCESTRY IS PLAYING -- POTENTIALLY PLAYING A ROLE TRYING TO UNDERSTAND WHAT THE IMPORTANT GENOTYPES ARE FOR EFFICACY WOULD BE SOMETHING THAT COULD BE EXPLORED IN THE PMI. >> YOU WANT TO EXPLAIN WHAT THAT IS FOR THAT PARTICULAR STORY? >> I'M NOT A CARDIO -- >> WHAT THE CONCEPT IS THAT YOU'RE TALKING ABOUT. >> THIS IS A DRUG FOR TREATMENT OF HEART FAILURE. AND IT WAS SPECIFICALLY APPROVED FOR TREATMENT IN AFRICAN-AMERICANS AND WHICH IS A VERY SORT OF BROAD MACRO ETHNIC GROUP, SO IF YOU THINK ABOUT IT, WHAT DOES THAT MEAN IN TERMS OF TARGETING FOR A PERSON WHO'S CONSIDERED AFRICAN-AMERICAN, IS IT SELF-REPORT OR IS THERE SOME KIND OF SKIN COLOR MEASURE OR IS IT GENETICS. SO I THINK IT WAS ONE STEP IN THE DIRECTION IN WHICH WE ALL WANT TO GO, WHICH IS MORE INDIVIDUALIZED OR WHAT WE CALL PRECISION HEALTH BUT IT WAS NOT THE END, WE NEEDED TO CONTINUE AND GO FURTHER TO SEE WHAT THE PRAR GENOTYPES LOOK LIKE. WE KNOW THAT CLINICAL TRIALS IN PARTICULAR FOR DRUGS ARE UNDERREPRESENTED IN TERMS OF POPULATION OFS OF COLOR, SO THIS ONCE AGAIN WOULD PROVIDE AN OPPORTUNITY FOR SOME OF THAT. SO THINK ABOUT CANCER REAL QUICK. MAYBE QUICK. PROSTATE CANCER IN PARTICULAR. BECAUSE I STUDY IT AND IT'S IMPORTANT. A ACTUALLY IT'S SAD WHEN YOU THINK ABOUT IT, AFRICAN-AMERICANS DISPROPORTIONATELY ARE IMPACTED BY PROSTATE CANCER. MORTALITY AND THERE HASN'T BEEN SORT AFTER CLEAR SORT OF CONCERTED EFFORT TO REALLY EXPLORE WHAT THE BIOLOGY AND RISK FACTORS ARE. OUT OF ALL THE DISPARITIES IN TERMS OF CANCER DISPARITIES, PROSTATE CANCER PROBABLY HAS THE STRONGEST BIOLOGICAL COMPONENT TO IT IN TERMS OF DISCOUNTING FOR THAT DISPARITY BETWEEN BLACK, WHITE AND ASIAN DESCENT POPULATION. SO THE PMI GIVES YOU AN OPPORTUNITY TO REALLY EXPLORE THE ENGAGEMENT OF AFRICAN-AMERICAN MEN WAS SUFFICIENT, TO REALLY EXPLORE THIS ISSUE. BECAUSE IF YOU THINK ABOUT THE FOCUS HISTORICALLY IN TERMS OF THE GENETICS OF PROSTATE CANCER, IT'S BEEN MAINLY FOCUSED ON WHITE MEN. BUT THE DISEASE DISPROPORTIONATELY IMPACTS AFRICAN-AMERICANS. THERE'S VERY LITTLE IN TERMS OF UNDERSTANDING WHY THAT IS. SO THIS WOULD BE A PERFECT OPPORTUNITY GIVEN THE RECENT WORK IN THE LAST EIGHT YEARS WHERE WE SEE THIS STRONG GENETIC SIGNAL ON CHROME ZONE 8224, WE SEE THE STRONG -- WHAT'S AFRICAN-AMERICAN ANCESTRY. WE NEED TO SORT OF GO FURTHER WITH THAT. THIS WOULD BE A PERFECT OPPORTUNITY FOR THAT. THEN, OF COURSE, LETHAL PROSTATE CANCER, WHICH WE KNOW VERY LITTLE IN TERMS OF THE MOLECULAR MECHANISM FOR THAT, AND I CAN GO ON AND ON ABOUT OTHER CANCER DISPARITIES, TRIPLE NEGATIVE BREAST CANCER AND THE LIKE, WHICH ARE DISPROPORTIONATELY AFFECTING POPULATIONS OF COLOR. >> I STILL MISS WORKING WITH RICK KITTLES. I'M IN PREVENTION AND CONTROL AT OUR CANCER CENTER SO I'M REALLY EXCITED ABOUT THE POSSIBILITY OF DEVELOPING MORE ACCURATE SUBPOPULATION RISK ESTIMATES BY VIRTUE OF HAVING LARGER AN MORE REPRESENTATIVE SAMPLES OF THE MIM. THE WORKING GROUP ON INCIDENTAL FINDINGS IN CLINICAL EXOME AND GENOME SEQUENCING WERE HIGHLY -- FOR THE RETURN OF INS CAN DENTAL FINDINGS ON 64 CONDITIONS OR GENES INCLUDING HEREDITARY BREAST CANCER. 75% OF THE WORK GROUP MEMBERS SAID THESE FINDINGS SHOULD ALSO BE RETURNED IN CHILDREN. THIS WORRIES ME FOR SUBPOPULATIONS BECAUSE OUR ESTIMATES OF RISK ARE LARGELY BASED ON MAJORITY POPULATION. OUR ESTIMATES FOR THE PREVALENCE OF BRCA1 AND BRCA2, UNSELECTED FOR FAMILY HISTORY ARE PRIMARILY BASED ON TWO STUDIES. ONE FROM NORTHERN CALIFORNIA, NORTHERN CALIFORNIA SITE OF THE BREAST CANCER FAMILY REGISTRY AND ANOTHER FROM PARTICIPANTS IN THE NICHD CARE STUDY WHO SELF-IDENTIFIED AS AFRICAN-AMERICAN FROM FIVE CITIES, AND BASED ON DR. KITTLES' WORK, WE KNOW THAT THE GENETIC -- EUROPEAN GENETIC CONTRIBUTIONS OF THOSE PEOPLE THAT SELF IDENTIFIED AS AFRICAN-AMERICAN W VERY WIDELY ACROSS THOSE 10 CITIES SO 10% EUROPEAN GENETIC CONTRIBUTIONS IN ATLANTA BUT 35% IN ONE OF THE OTHER FIVE SITES, WHICH IS SEE SEATTLE. I'D LIKE TO THINK THAT THE PMI WOULD GIVE US MUCH MORE ACCURATE PICTURES OF RISK. THE SECOND THING THAT ALSO THESE THINGS COME FROM OUR PERSONAL -- FROM OUR WORK, BUT WE HAVE ONE OF THE TRANSDISCIPLINARY -- CANCER CENTERS FROM NCI, AND I REALLY SEE THE POSSIBILITY FOR THE STUDY OF OBESITY, WHICH CONTRIBUTES TO MANY COMMON CONDITIONS AND TIE IN SUBPOPULATIONS LIKE NATIVE HAWAIIAN, INCREASED SAMPLE SIZES THROUGH THE PMI WOULD ALLOW US TO BETTER UNDERSTAND THE RULES OF SOCIAL FACTORS AND INFLAMMATION AND DEVELOPMENT TARGETED INTERVENTIONS TO DECREASE THE RATES OF OBESITY. THANK YOU. >> I MENTIONED BEFORE THE GROWTH OF THE BIG FOUR CHRONIC CONDITIONS AMONG CHILDREN, AND THOSE ARE HIGHLY, ALL FOUR OF THEM, MORE COMMON AMONG KIDS OF COLOR. WHY IS THAT? >> ASTHMA AND MENTAL HEALTH CONDITIONS AMONG KIDS OF COLOR. WE HAVE RELATIVELY LITTLE INFORMATION TO EXPLAIN THAT. WE HAVE SMALL STUDIES THAT PROVIDED EVIDENCE FOR CAUSATION OF THAT, BUT RELATIVE -- PMI ACTUALLY -- PRENATALLY ABOUT THE ONSET OF SOME OF THESE CONDITIONS, AND WE KNOW THINGS LIKE AS MA, FOR EXAMPLE, SO WE ASTHMA, SO WE DO HAVE PRENATAL ANTECEDENTS CRITICAL TO ITS DEVELOPMENT AND THOSE PROBABLY DO VARY BY A VARIETY OF THOSE BETTER ABLE TO GO FORWARD. AA. LITTLE BIT OF THAT IS WORTH THAT. BUT THAT'S JUST ONE EXAMPLE FROM THE PMI OFFERS A TRE MEN CAN DUS OPPORTUNITY TO HAVE A MUCH MORE DIVERSE POPULATION OR STUDY WELL OVER TIME. THAT'S REALLY GENERALIZABLE TO THE OTHER MAJOR CONDITIONS OF CHILDHOOD. OBESITY, DR. GEHLERT JUST MENTIONED, WE KNOW INCREASING AMOUNTS ABOUT THE PERINATAL INFLUENCES ON OBESITY MORE FROM ANIMAL STUDIES BUT SOME INTERESTING HUMAN STUDIES FROM SCANDINAVIA RECENTLY IN THIS AREA, WHICH REALLY DO SHOW CERTAIN KINDS OF EXPOSURES DURING PREGNANCY, REGARDLESS OF ALL OTHER VARIABLES IS JUST ONE EXAMPLE. I THINK WE'RE GETTING TO UNDERSTAND WHERE, AGAIN, POPULATION STUDIES THAT WOULD ALLOW US TO EXAMINE THIS AND HOW THIS IS IMPLEMENTED IN DIFFERENT KINDS OF RISK POPULATIONS WOULD BE REALLY HELPFUL. TREMENDOUS CONFOUNDING OF RACE AND ETHNICITY STATEMENTS IN THIS COUNTRY. THE ABILITY OF THE PMI TO HELP US DISAGGREGATE -- WOULD BE A TREMENDOUSLY RAVISHING STEP FORWARD. OUR ABILITY TO WITHSTAND SOME OF THE ISSUES THAT DR. KITTLES AND DR. GEHLERT RAISE. >> I THINK THE PANEL HAS REALLY DONE AN EXCELLENT JOB OF PLAYING OUT THE SPECIFICS. I WANTED TO JUST REINFORCE THE THINGS THAT SOME OF THE COMMENTS FROM THE FLOOR WILL REALLY HELP US BE ABLE TO FIGURE OUT HOW CAN WE DO JUSTICE TO THE IMPORTANCE OF THESE ISSUES. AND THEN I'M GOING TO ASK THE PANELISTS TO DESCRIBE IN THE LAST FEW MINUTES OF OUR PART OF THE TIME TO DESCRIBE WHAT THE IDEAL COHORT WOULD LOOK LIKE, NOT IN TERMS OF YOUR SAMPLE SIZE CALCULATION, BUT WHAT WOULD THE COHORT LOOK LIKE, HOW WOULD YOU MEASURE SUCCESS OF GETTINHE KIND OF COHORT THAT'S NEED TODAY DO JUSTICE TO THESE ISSUES. SOWSH I THINK THE MAIN THING THAT COMES THROUGH IN WHAT YOU SAID SO FAR IS THAT MOST OF THE DATA COMES FROM THE PART OF THE POPULATION THAT IS LOWER RISK AND THE HIGH RISK POPULATION, WE ACTUALLY ARE GUESSING ABOUT HOW TO ADDRESS THE ISSUES. THAT JUST COMES FROM ALL THREE OF YOU, AND I THINK ALSO THAT THE STRATEGY OF TARGETING OF A WHOLE SOCIAL POLITICAL GROUP IS NOT VERY PRECISE AND SPECIFIC AND COULD EVEN DO HARM BECAUSE THE GENETIC OVERLAP IS DIFFERENT IN DIFFERENT POPULATIONS, AND SO PMI COULD REALLY GIVE US THE CHANCE TO GET BEYOND USING THE CENSUS BUREAU CATEGORIES AS -- IN THE AGGREGATE SENSE. SO WHAT DOES THIS COHORT HAVE TO LOOK LIKE? A MILLION PEOPLE SOUNDS LIKE A LOT OF PEOPLE. WHAT DOES IT HAVE TO LOOK LIKE IN YOUR VIEWS IN THE KIND OF RESEARCH THAT YOU DO IN ORDER TO ALLOW YOU TO STUDY SOME OF THESE ISSUES? SHOULD WE GO ON THE OTHER ORDER AND TAKE CHILDREN FIRST? >> I THINK THERE ARE TWO OR THREE THINGS REALLY CRITICAL. ONE IS HAVING A COHORT THAT IS LARGE AND DIVERSE ENOUGH TO DEAL WITH RACIAL ETHNIC AND SOCIOCULTURAL DIFFERENCES IN WAYS THAT WE'VE NOT BEEN ABLE TO DO UP TO THIS POINT. SECOND PART OF IT IS, IT NEEDS TO BE LARGE ENOUGH THAT WE CAN ACTUALLY EXAMINE THE ANTECEDENTS OF A NUMBER OF THE LESS COMMON PEDIATRIC CHRONIC CONDITIONS. SO AGAIN I TALKED BEFORE ABOUT OBESITY, ASTHMA AND -- BUSY KEL CELBUTSICKLE CELL, CYSTIC FIBROSIS, IT NEEDS TO BE LARGE ENOUGH TO HAVE SAMPLES THAT DEVELOP WITH THOSE KINDS OF CONDITIONS OVER TIME. THE VERY RARE ONES, OBVIOUSLY THAT DOESN'T MAKE ANY SENSE TO INCLUDE THAT KIND OF SET OF CONDITIONS WITHIN THE CONTEXT OF THE PMI, WE HAVE OTHER STAT GEES ADDRESSING EXTREMELY RARE CONDITION, BUT THAT'S, I THINK, ANOTHER CRITICAL PART OF IT. SO THOSE WOULD BE THE COUPLE ELEMENTS I WOULD CONSIDER TO BE CRITICAL FOR DEVELOPMENT. >> WHO WANTS TO GO NEXT? >> FIRST I WANT TO JUST EMPHASIZE THE DISPARITIES OCCUR IN ALL MAJOR DISEASES BY RACE, ETHNICITY, SOCIOECONOMIC STATUS BUT ALSO GEOGRAPHY, RURAL, URBAN, WHICH WE HAVEN'T MENTIONED TOO MUCH, AND THERE ARE MANY TYPES OF DISPARITIES AND MANY SUBPOPULATIONS AFFECTED. I DON'T KNOW IF YOU'VE SEEN A SUPPLEMENT TO THE AMERICAN JOURNAL OF PUBLIC HEALTH THAT CAME OUT IN THE LAST DAY OR TWO ON PMI, AND THERE'S A SMALL ARTICLE BY FOLKS OF THE NATIONAL CANCER INSTITUTE THAT I WOULD REALLY URGE YOU TO LOOK AT BECAUSE IT HAS AN ALGORITHM FOR FIGURING OUT HOW TO INCLUDE SUBPOPULATIONS. THEY TALK ABOUT POCKETS OF COMMUNITIES THAT ARE SIGNIFICANTLY UNDERREPRESENTED WITHIN THE GENERAL MINORITY AND UNDERSERVED POPULATION, AND IF THEY'RE NOT INCLUDED, WE'LL HAVE AN INCOMPLETE PICTURE OF HEALTH DES IN THE UNITED STATES. I THINK THE PMI HOLDS THE PROMISE OF DECREASING DISPARITIES IN TWO MAJOR WAYS, ALLOWING US THE INFORMATION ON WHAT'S FUELING DISPARITIES, THAT'S REALLY ELUDED US TO DATE, TO ALLOW US TO PREVENT DISEASE FOR EVERYONE, BUT I THINK FOR EVERYONE ULTIMATELY, BUT ESPECIALLY FOR THOSE WHO ARE DISPROPORTIONATELY AFFECTED. ALSO TO DEVICE INTERVEPTIONS FOR INTERVENT IONS TO THE PEOPLE I TALKED ABOUT INITIALLY WHO REALLY ARE DRIVING DISPARITIES IN THE UNITED STATES. TOO OFTEN WE DEVICE INTERVENTION FOR THE PEOPLE WHO ARE EASIEST TO ACCESS, WHO ARE MOST LIKE US, BECAUSE THEY'RE IN OUR CLINICS, THEY'RE IN OUR WAITING ROOMS, THEY'RE IN OUR DATASETS. THUS BRINGING THEM CLOSER TO US IN TERMS OF HOW THE OUTCOMES IN ESSENCE YOU'VE DECREASED THE DISPARITIES, BUT REALLY LEAVING THE HEALTH OF OTHERS WHO ARE HARDER TO ACCESS UNCHANGED. REALLY, I THINK, MARGINALIZING THEM FURTHER. IF WELL DONE, THE PMI HAS THE POTENTIAL TO BUILD TRUST IN MEDICINE AND IN RESEARCH. I THINK THAT IF WE DID TO NEIGHBORHOODS, IF WE USE SOME OF THE METHODS THAT WE'VE HEARD ABOUT, WE CAN BREAK DOWN SOME OF THE BARRIERS. AGAIN, IF WE TREAT PEOPLE RESPECTFULLY, WE DON'T EXPECT THEM TO COME TO US, WE D GO TO THEM AND COMMUNICATE THROUGH THEIR CHANNEL, NOT NECESSARILY OUR CHANNELS. WE CAN BREAK DOWN THE BARRIERS THAT KEEP A LOT OF PEOPLE FROM PARTICIPATING IN CARE IN CLINICAL TRIAL. ENSURING REPRESENTATIVES OF CLINICAL TRIALS IS A MAJOR CONCERN AS WE'VE HEARD THE PRESIDENT OF THE AMERICAN SOCIETY FOR CLINICAL ONCOLOGY, FOR EXAMPLE, RECENTLY WROTE IN THE "NEW YORK TIMES" THAT LOW PARTICIPATION CLINICAL TRIALS THREATENS OUR CONTINUED PROGRESS AGAINST CANCER. IF DONE IN AN INCLUSIVE FASHION, I THINK THE PMI COULD ADD TO TRUST AND INCREASE THE PUBLIC'S UNDERSTANDING AND FAMILIARITY WITH RESEARCH AND INCREASE THE REPRESENTATIVES IN THE CLINICAL SAMPLES. AND I THINK AGAIN THAT SUCCESS WILL HAVE DONE IT RIGHT, IF WE INCLUDE PEOPLE WHO AREN'T IN STABLE HEALTHCARE SITUATIONS, AND THIS WILL REQUIRE -- I THINK WE NEED SAMPLING SPECIALISTS ON THIS TEAM. AND WE ALSO NEED TO COME UP WITH NEW METHODS FOR WORKING WITH SMALL DATA. I LIKE BASIAN STATISTICS, WE NEED TO REALLY PUSH THE ENVELOPE AND I'D URGE US TO CONSIDER THAT. >> THANKS. SO WE'RE ABOUT AT OUR TIME, BUT I WANT TO GIVE DR. KITTLES THE LAST WORD ON THIS ISSUE. >> I COULDN'T HAVE SAID IT MUCH BETTER THAN SARAH AND JAMES. THERE'S SEVERAL ALGORITHMS OUT AND SEVERAL MODELS IN TERMS OF HOW THE NUMBERS SHOULD LOOK AND ALL OF THAT. A LOT OF IT REALLY DEPENDS ON THE RESEARCH QUESTION BUT I WILL SAY THIS ONE THING. I THINK AS A PERSON THAT REALLY TRIES TO UNDERSTAND GENETICS OF HUMAN POPULATIONS, I THINK WE ALL KNOW THAT RARE VARIANTS HAVE SOME ROLE IN TERMS OF HEALTH AND DRUG RESPONSE. WE ALSO HAVE TO UNDERSTAND THAT COMMUNITIES OF COLOR HAVE A HIGHER PROPORTION OF THESE RARE GENETIC VARIANTS. SO HERE'S AN OPPORTUNITY, I THINK, TO REALLY UNDERSTAND THE ROLES THAT THESE VARIANTS ARE PLAYING IN TERMS OF HEALTH. SO I'LL JUST END THERE. >> SO WE WILL TAKE YOUR QUESTIONS. I'LL STAND UP SO I CAN SEE WHO'S -- >> SO WE'RE TRYING SOMETHING NEW. WE'RE GOING TO WALK SOME MICROPHONES AROUND. WE HAVE GWEN, SALLY AND JOSH RUNNING AROUND WITH MICROPHONES. RAISE YOUR HANDS. IF THIS DOESN'T WORK, WE'LL DID BACK TO THE LINES. >> YOU'RE AT THE MIC BUT THE MIC ISN'T THERE. >> SO PEOPLE WITH MICROPHONES, GO TO THE PEE PEOPLE WITH THEIR HANDS UP. WE'RE GOING TO DISRUPT THE USUAL WAY YOU DO THIS. >> SO WE'RE GOING TO TAKE YOU FIRST AND THEN WE'LL COME TO THE WORKING GROUP. PLEASE. INTRODUCE YOURSELF A AS YOU SPEAK. >> I'M SUE BAKKA, PROFESSOR OF NURSING FROM COLUMBIA UNIVERSITY, AND I AM A P.I., A COHORT OF ABOUT 6,000 DOMINICANS THAT LIVE IN WASHINGTON HEIGHTS IN NEW YORK CITY, SO THIS IS -- SO ONE OF THE PLEAS IS, OF COURSE, FOR HISPANIC SUBGROUP TYPE OF THINGS. WE HAVE GATHERED THIS COHORT THROUGH A VERY COMMUNITY DRIVEN APPROACH. WE HAVE EXAMINED PREDICTERS OF WILLINGNESS IT TO CONSENT FOR THREE IMPORTANT ASPECTS OF PRECISION MEDICINE, SHARING OF ELECTRONIC CLINICAL DATA, SG OF WILLINGNESS TO BE RECONTACT AND THEN ALSO CONSENT FOR PROVISION OF THE BIOSPECIMEN. ONE OF THE THINGS THAT STRONGLY PREDICTS ACROSS ALL THREE OF THOSE ASPECTS ACTUALLY IS HEALTH LITERACY, ALTHOUGH OVERALL OUR PANEL IS QUITE LOW IN LITERACY LEVEL, BUT WE FOUND WITH WORKING THROUGH BUILDING UP THE TRUST IN THE COMMUNITY, WITH COMMUNITY HEALTH WORKERS AND OTHER DOMINICAN STAFF THAT WE'VE BEEN ABLE TO HAVE A HIGH LEVEL OF PARTICIPATION AND AGREEMENT, WE HAVE ALSO CONTINUOUSLY FED TAILORED DATA BACK TO THE COMMUNITY FROM OUR SURVEY. SO WE HAVE THE SOCIAL DETERMINANTS OF HEALTH AND HEALTH BEHAVIORS FROM OUR SURVEY, WE HAVE ELECTRONIC CLINICAL DATA AND THEN WE HAVE THE BIOSPECIMENS. I'M GOING TO RAISE AN ISSUE I COULD RAISE IN ANY SESSION, BUT ONE OF THE INTERESTING THINGS IS I CAN'T ACTUALLY DEPOSIT THE SPECIMENS IN DB GAP, BECAUSE THE STUDY IS FUNDED BY ARC. SO THIS IS A $9 MILLION FEDERAL INVESTMENT OF OUR TAX DOLLARS, BUT IT CAME THROUGH ARC AND CURRENTLY THE POLICY FOR DEPOSIT OF THE SPECIMENS IN DB GAP IS THAT THEY'RE EITHER NIH OR YOU NEED SPONSORING FROM AN IC. SO I THINK ONE OF THE THINGS WE NEED TO THINK ABOUT FOR GETTING THE SPEN MEN SPES MINES INTO DB GAP IS WHAT MIGHT BE THE MECHANISM FOR INCLUSION OF SAMPLES GATHERED THROUGH FUNDING MECHANISMS OTHER THAN NIH TO BE PART OF A PMI. THANK YOU. >> I'M GOING TO LOOK RIGHT OVER AT THE NIH TABLE FOR AN ANSWER TO THAT QUESTION. OR COMMENT. >> WE WERE JUST SAYING GOSH, THAT DOESN'T SOUND LIKE, BECAUSE DB GAP IS SUPPOSED TO BE THE PLACE WHERE DATA OF ALL SORTS CAN BE IT DEPOSITED AND I AM FRANKLY UNAWARE THAT IT REQUIRES AN IC SPONSOR. WE SHOULD TALK. >> SORRY, I JUST WANTED TO CHIME IN THE ISSUE WITH SPONSORSHIP HAS TO DO WITH HAVING AN IC THAT'S WILLING TO HAVE THE DATA ACCESS COMMITTEE, THEIR DATA ACCESS COMMITTEE REVIEW THE STUDY. IT IS SOMETHING WE'RE WILLING TO WORK THROUGH AND I'LL BE HAPPY TO TALK TO YOU AFTERWARDS. >> I'M LAURA RUSSELL, I GOT HERE FROM NEW YORK TO PHILADELPHIA TO WRONG NEUROSCIENCE BUILDING TO THE RIGHT NEUROSCIENCE BUILDING, SO I'M VERY PLEASED TO JOIN YOU JUST A LITTLE BIT LATE. I HAVE SOME UNIQUE PERSPECTIVES, I WAS SICK FOR 20 YEARS, NOW I'M NOT. I'VE SPENT THREE YEARS BY THE GRACE OF GOD GETTING HEALTHY AGAIN, BUT DIVING INTO THIS BECAUSE THERE'S A LOT OF POTENTIAL HERE. I HAD NOT JUST CAN SE WHIC CANCER, WHICH W AS KIND OF A BUMP IN THE ROAD, AND THANK GOD TO PEOPLE LIKE DR. SUSAN LOVE, I HAVE MY LYMPH OF NODES AND MY HEALTH, BUT THEN I HAD FIBROMYALGIA AND ALL THAT MYSTERY STUFF GOING ON, THEN A YEAR OF ACCELERATING WEIRD AUTOIMMUNE NEUROLOGICAL PSYCHIATRIC DERMATOLOGICAL DISEASES, YOU NAME IT. IT TURNS OUT I HAVE A UNIQUE PERSPECTIVE ON CHRONIC DISEASE WHICH I'D LIKE YOU TO ADDRESS WHICH IS IT'S REALLY NOT THAT COMPLICATED, THEY'RE NOT REALLY IN ALL CASES A MEDICAL PROBLEM AND THEY DON'T ALL NEED DRUGS. WHAT THEY NEED IS TO LOOK AT WHAT GENETIC GLITCHES WE ARE BLESSED WITH AS JE NE IT TICK SNOWFLAKES, AND WHAT TOXINS WE ARE CURSED WITH IN THE EXTERNAL ENVIRONMENT, UNFORTUNATELY WITHIN OUR BODIES ALSO IN TERMS -- IT'S NOT ALL DIET DRUGS AND EXERCISE, MEDICAL DEVICES. UNFORTUNATELY I WAS POISONED BY MY DENTAL FILLINGS. I HAVE MET METHYLATION GLITCHES. I WAS POISONED BY THE MOLD THAT MY PARENTS CONDO GOT THROUGH NO FAULT OF THEIR OWN AND THEY DIDN'T REMEDIATE PROPERLY BECAUSE THEY WERE OLD. WHAT WAS THE OTHER THING? OH, LIME. IT DIDN'T RESPOND TO THE MANY TIMES I HAD THE CHEAPEST GENERIC, IT JUST NEEDED ONE THAT WAS STILL A $7 CO-PAY, AND I CAN TELL YOU, I COST THE HEALTH PLAN A FORTUNE. I SAW SO MANY SPECIALISTS, IT WASN'T FUNNY, AND THEY ALL LOOKED AT ONE PART OF THE BODY AND ONE PART OF THE SYSTEM -- >> I'M SORRY TO INTERRUPT BUT THIS SESSION IS ON THE INCLUSION OF HEALTH EQUITY. SO WHAT I WANT TO SAY THERE IS, MUCH MORE IMPORTANT THAN ALL THE THINGS I'VE DONE IN TERMS OF DEMOGRAPHICS AND AGE, YOU NEED TO DO BASKET STUDIES ON EVERYTHING. I WONDER, AND THE PEOPLE IN THIS ROOM COULD FIGURE OUT, IS THERE SOMETHING CALLED HUMAN METHYLATION DEFICIENCY DISEASE THAT UNDERLIES A WHOLE HOST OF PARTICULARLY WHAT DOCTOR PARRIN WAS TALKING ABOUT. IF WE COULD LOOK AT METHYLATION ISSUES, IMMUNE GLITCHES, AND THE MOLD TOXICITIES, YOU'RE GOING TO FIND OUT A LOT ABOUT CANCERS AND YOU NEED TO INCLUDE -- >> THANK YOU. WE'RE GOING TO MOVE ON TO OUR NEXT SPEAKER RIGHT NOW. >> IF YOU DON'T INCLUDE DEP TALL -- >> I WILL KINDLY ASK YOU TO PLEASE -- THANK YOU. WE HAVE A LOT OF PEOPLE TO HEAR FROM TODAY. IF WE COULD CAN DID TO OUR NEXT QUESTION. >> THANK YOU. >> THANK YOU. MY NAME IS JOHN BIRCH, I'M A PRIVATE INVESTOR. I HAVE A SPECIFIC QUESTION AND I HOPE A SHORT ONE FOR DR. PARRIN. YOU TALKED ABOUT THE NEED TO KEEP DATA STARTING PRENATALLY, AND FOR A THOUSAND DAYS STARTING THEN. WHAT IS THE STATE OF THE CURRENT ELECTRONIC MEDICAL RECORDS FOR COLLECTING THAT DATA? >> IT VARIES A GOOD DEAL FROM SITE TO IT SITE, BUT THERE ARE PLACES NOW WHERE THE FACT OF THOSE KINDS OF DATA CAN BE AGGREGATED AND PUT TOGETHER. IT'S NOT TYPICAL THAT IF YOU'RE IN A CLINICAL SETTING, THAT I AS A PEDIATRICIAN, FOR EXAMPLE, WILL HAVE EASY ACCESS TO THE DATA ON THE MOM OR THE DAD OF THE KID THAT I'M SEEING. THAT IS NOT TRUE AT THIS POINT. ALTHOUGH THERE ARE WAYS FROM A RESEARCH BASIS, I CAN ACTUALLY GET THOSE DATA AND REALLY MAKE USE OF THEM. SO I THINK THERE'S ACTUALLY A LOT OF GOOD EXPERIMENTATION OF THAT WITH A VARIETY OF STRATEGIES FOR PUTTING TOGETHER PATIENT DATABASES EFFECTIVELY TO BE ABLE TO LOOK AT THAT OVER TIME. IT'S A MATTER OF MAKING SURE WE'RE COLLECTING THE DATA, ALL THE DATA THAT'S RELEVANT THAT WE'RE TALKING ABOUT HERE, WHICH IS GOING BEYOND WHAT'S IN MED MEDICAL RECORDS. >> THAT WAS RELIT QUESTION I WAS GETTING AT, TO WHAT EXTENT WAS THE DATA THAT YOU WOULD LIKE TO SEE COLLECTED PART OF STANDARD PROTOCOLS? >> IT'S NOT, IN GENERAL. I THINK THE REALITY IS THAT WE DON'T HAVE MUCH GENETIC DATA IN MEDICAL RECORD, WE DON'T HAVE MUCH IN THE SOCIAL DETERMINANTS DATA IN MEDICAL RECORDS, SO SOME KEY VARIABLES ARE PAINFULLY ABSENT. I WAS JUST GOING TO ECHO THAT, ELECTRONIC MEDICAL RECORDS ARE MADE FOR BILLING, NOT FOR RESEARCH. SO WE SHOULDN'T KID OURSELVES THAT THERE ARE HIDDEN MINES OF WONDERFUL DATA. >> MEDICAL RECORDS ARE FOR TREATMENT, THEY'RE NOT FOR BILLING. CLAIMS DATA ARE FOR BILLING. CLAIMS DATA ARE MUCH, MUCH LESS RICH THAN -- >> BUT THE WAY THAT THE ELECTRONIC MEDICAL RECORDS HAVE BEEN SET UP IS REALLY NOT FOR RESEARCH. IT'S REALLY MUCH MORE FOR BILLING AND IT SIEMS CAN HELP WITH INFORMATION. >> IT'S FOR CLINICAL CARE, I'M SORRY. >> I KNOW, BUT THEY DON'T WORK VERY WELL FOR CLINICAL CARE. >> OKAY. >> IMPROVEMENT NEEDED. >> WE'RE GOING TO COME -- ARE WE BACK OVER ON THIS SIDE OF THE ROOM? OKAY. >> THANK YOU. THERE'S A LOT OF DISCUSSION ABOUT RETURNING THE DATA TO THE PEOPLE PARTICIPATING, BUT HOW DO WE ASSURE BUILT INTO THIS THAT UNDERREPRESENTED PEOPLE HAVE ACCESS TO THE TECHNOLOGIES THAT COME OUT OF THIS RESEARCH SO THAT WE'RE NOT INCREASING HEALTH DISPARITY BECAUSE THE RESEARCH LEADS TO VERY EXPENSIVE TECHNOLOGY THAT THEIR INSURANCE WON'T PAY FOR? >> ANY OF THE PANELISTS WANT TO COMMENT ON THAT? >> THAT'S ALWAYS BEEN MY FEAR. WHEN WE TALK ABOUT PRECISION HEALTH, IF WE'RE NOT CAREFUL AND IF WE'RE NOT -- IT'S ALL THE COMMUNITIES AREN'T ENGAGED EARLY AND PROPERLY, IT WILL ACTUALLY INCREASE THE RISK IN TERMS OF THESE DISPARITIES, BECAUSE OF THE KNOWLEDGE BASE. BUT THEN ALSO THE INFORMATION IN TERMS OF TREATMENT AND THE TECHNOLOGIES THAT THIS IS EXPENSIVE STUFF IN SOME CASES, AND SO YOU'LL HAVE SITUATIONS WHERE THESE HIGH END CLINICS WILL HAVE THE TECHNOLOGY AND OPPORTUNITIES FOR THEIR PATIENTS, BUT THEN THOSE WITH -- WHO ARE UNDERINSURED MAY NOT NECESSARILY GET THE SAME THING. SO I THINK THERE'S AN OPPORTUNITY HERE TO REALLY ENGAGE AND TO EXPLORE HOW TO MAKE SURE THAT DOESN'T HAPPEN. I THINK IT'S IMPORTANT FOR US TO TALK ABOUT THAT NOW. >> ABSOLUTELY. COMMUNITY ENGAGEMENT AS WELL, IF PEOPLE UNDERSTAND AT THE END OF THE DAY, THEY'RE NOT PARTICIPATING IN SHOWING UP AND VOLUNTEERING FOR SOMETHING THEY WON'T HAVE ACCESS TO. THANK YOU. >> LET ME JUST MAKE A COMMENT WHILE WE'RE TRANSITIONING TO THE NEXT QUESTION, BECAUSE THIS IS AT LEAST THE SECOND COMMENT ON CHANGES THAT MIGHT BE NEEDED IN SECTORS OUTSIDE OF THE HEALTH SYSTEM, IF THEY WERE -- DO WE NEED A CHANGE IN THE WAY -- ACCESS TO DIGITAL TECHNOLOGY AND THE WAY IT HAS -- IN MY EXPERIENCE, A LOT OF PEOPLE HAVE PERIODIC ACCESS TO CELL PHONES, BUT IT'S NOT THE TWO-YEAR PLAN, IT'S WHEN THEY CAN FIND THE MONEY TO BUY A CARD TO USE IT OR SOMETHING, WHICH MEANS IT'S VERY HAPHAZARD. SO IF WE CAN KEEP A LIST OF THE THINGS THAT REALLY MEAN WE SHOULD CHANGE THE WAY BUSINESS IS DONE IN ANY PART OF A SYSTEM THAT COULD INFLUENCE OUR ABILITY TO BE SUCCESSFUL, THAT WE CAN MAYBE LOOK AT THOSE AND FOCUS ON THOSE ISSUES A AT SOME POINT. THANK YOU. >> ONE JUST BABY STEP THAT WE'VE DONE AT THE CANCER CENTER IS TO WORK WITH PUBLIC LIBRARIES, AND OUR MEDICAL LIBRARIANS TO AT LEAST MAKE THE WEB ACCESSIBLE TO PEOPLE SO THAT THEY CAN GIVE INFORMATION. IT'S JUST A TINY STEP, BUT AGAIN, IT'S PART OF WHAT I WAS SAYING EARLIER ABOUT MOVING IN TO COMMUNITIES AND NOT EXPECTING PEOPLE TO CHANGE OR TO COME TO YOU. >> ONE OF THE INCENTIVES FOR ADOLESCENTS TO PARTICIPATE IN SOME TRIALS HAS BEEN A BETTER RATE PLAN FOR THEIR IPHONES, FRANKLY, AND I AM AMAZED BY THE ABILITY TO USE IPHONE TECHNOLOGY TO GATHER VAST AMOUNTS OF DATA, AND KIDS ARE REMARKABLY WILLING TO SHARE THAT. >> MY NAME IS LAURA FROM WASHINGTON UNIVERSITY IN ST. LOUIS. I WANT TO BRING UP A GROUP THAT I OFTEN DON'T HEAR ABOUT WHICH IS PEOPLE WHO USE SUBSTANCES AND THE ADDICTION AREA. SO IF I LOOK AT THE MOST LIKELY CAUSES OF DEATH IN THE UNITED STATES, CANCER, HEART DISEASE, LUNG DISEASE, A VARIETY OF DISEASES, BUT WHEN YOU LOOK AT THE MODIFIABLE FACTORS BEHIND IT, IT'S SMOKING, CLOL, DRU ALCOHOL, DRUG USE. SO OFTENTIMES THESE INDIVIDUALS ARE NOT RECEIVING ANY TYPE OF TREATMENT. I'M GOING TO COMMENT THAT I VIEW DRUG USE PROBLEMS AS ACTUALLY A PEDIATRIC DISEASE, BECAUSE THE USE IS INITIATED IN EARLY ADOLESCENCE, OFTEN NOT QEUR HE'D QUERIED BY PEDIATRICIAN. THERE IS THE ISSUE OF CFR 42 PART 2, I BELIEVE IS THE REGULATION THAT REMOVES SUBSTANCE USE TREATMENT FROM THE MEDICAL RECORDS WITH THE SHARING. SO THERE WAS A RECENT EDITORIAL IN JAMA ABOUT HOW THE SUBSTANCE USE TREATMENT IS BEING REMOVED FROM THE MEDICARE RECORDS. SO THE INTENTION IS TO PROTECT INDIVIDUALS WITH AI DICKS, BUT WHAT'S ACTUALLY HAPPENING IS THAT IT IS HARMING THEM AND REMOVING THEM FROM THE TREATMENT. SO I WANT TO ADVOCATE FOR THAT PION, WHICH IS OFTEN POOR, YOU KNOW, AND DISADVANTAGED IN SO MANY OTHER WAYS. >> THANK YOU. >> I'M LESLIE ALEXANDER, I'M SUPER EXCITED TO BE HERE. I THINK THE INITIATIVE IS INCREDIBLE AND POWERFUL AND EXCITING. PU IT MAKES ME AS NERVOUS AS EXCITED WHEN I LISTEN TO THE DISCUSSION GOING ON, BECAUSE IT SEEMS LIKE, AND OF COURSE IT'S THE PART OF BEGINNING ANY BIG PROJECT AS YOU THINK BIG, BUT DR. COLLINS, WHEN YOU SAID YOU NEED MORE THAN A MILLION PEOPLE, WHEN I LISTEN TO WHAT'S BEING CAN DESCRIBED HERE, WHIC WE NEED WAY MORE THAN A MILLION PEOPLE, BECAUSE THERE'S NO WAY WE CAN TACKLE EVERYTHING THAT'S BEEN RAISED SO FAR REALISTICALLY WITH A COHORT OF A MILLION PEOPLE, AND UNLESS WE'RE GOING TO FOLLOW THOSE MILLION PEOPLE FROM PRENATAL THROUGH THEIR DEATH, WE'RE STILL NOT GOING TO BE ABLE TO ANSWER A LOT OF THE QUESTIONS THAT ARE BEING RAISED PARTICULARLY ABOUT THE REALLY RARE, THE SUBVARIANT. IT SEEMS TO ME THERE'S GOING TO NEED TO BE, AND I HAVE NO DOUBT BECAUSE I'VE WORKED WITH DR. COLLINS IN THE PAST, THAT THE LC ISSUES ARE HUGE AROUND THIS PROJECT. AND PART OF THAT RELATES TO THIS ISSUE OF -- TO THE COMMUNITY. IF WE'RE GOING TO ENGAGE PEOPLE, I REALLY WANT TO COMMEND PEOPLE WHO HAVE TALKED ABOUT THESE INCREDIBLY HARD TO REACH POPULATIONS. I LIVE IN AUGUSTA, GEORGIA NOW. IT'S A NEW EXPERIENCE FOR ME. BUT THERE ARE A LARGE GROUP OF PEOPLE, WHEN EVEN IT IF CARE IS FREE, AND EVEN IF IT YOU'RE GOING DOOR TO DOOR, THEY DO NOT WANT TO ENGAGE WITH THE MEDICAL COMMUNITY. EVEN IF YOU'RE OFFERING FOR PEOPLE FOR LUNG CANCER SCREENING, WHEN YOU SAY THEY NEED TO HAVE A REFERRAL, THEY DON'T HAVE A PCP, YOU OFFER THEM ONE, THEY HANG UP. SOME OF THEM DO NOT WANT TO ENGAGE, AND YOU'VE GOT TO FIGURE OUT IF THEY'RE THE ONES WE'RE MOST CONCERNED ABOUT, HOW DO YOU GET THEM IN. BUT IT TO WRAP UP, I'D SAY WE'D BETTER BE CAREFUL NOT TO OVERPROMISE AND UNDERDELIVER WITH WHAT WE'RE TALKING ABOUT IN THE COHORT OR PEOPLE REALLY WON'T -- AND IT WILL BE ONE MORE EXAMPLE OF THIS IS WHAT YOU TOLD ME, YOU PROMISED ME ALL THESE EXCITING THINGS, BUT MUCH OF WHAT WE'RE TALKING ABOUT, UNLESS THIS IS GOING ON FOR LIFE, WILL BE FUNDED AND WILL -- HOW PEOPLE USE THE HEALTHCARE SYSTEM, BECAUSE THE OUTCOMES PART, WHEN YOU TALK ABOUT PROSTATE CANCER IN AFRICAN-AMERICAN MALES, AT LEAST IN GEORGIA, WE'RE THINKING A LOT OF IT IS BECAUSE THESE MEN ARE NOT BEING OFFERED THE SAME OPTIONS FOR TREATMENT. THEY DIE THREE TIMES AS OFTEN AS WHITE MALES. SO I JUST THINK THERE'S GOT TO BE SOME CAUTION AROUND THIS AS WELL. >> LET ME JUST SAY ONE THING. WE'VE TALKED ABOUT RECRUITING, GOING TO TALK TO PEOPLE IN SORORITIES AND CHURCHES. ONE THING WE'VE FOUND IS THAT WE NEED TO WORK THROUGH SHELTERS, WE NEED TO WORK THROUGH LAUNDROMATS, TO SORT OF CHANGE OUR THINKING ABOUT HOW WE GO OUT TO TALK TO PEOPLE. AND THAT REALLY SENDS A MESSAGE TOO, I THINK, THAT YOU'RE WILLING TO GO AN EXTRA STEP, THAT PEOPLE DON'T HAVE TO COME TO YOU, SO I'D URGE PEOPLE TO INCLUDE THAT IN THINKING. >> WE ARE HAVING THE NEXT PANEL ON RECRUITMENT ISSUES, SO WE'LL BE ABLE TO EXPLORE THOSE ISSUES A LOT MORE ON THE NEXT PANEL. I'M POINTING TO THE PERSON WITH THE MIC. >> YES, THANK YOU SO MUCH. MY NAME IS STEPHANIE OKEY, THE MOTHER OF TWO TEENAGERS, ONE OF WHOM IS IS LIVEING WITH A CHRONIC ILLNESS, AND AN AGING FATHER WHO HAS A CHRONIC ILLNESS, AND PROBABLY WHAT OCCUPIES A LOT OF MY TIME, I'M HEAD OF NORTH AMERICA AND SENIOR VICE PRESIDENT AT GENZYME AND WE MAKE PRODUCT FOR PEOPLE WITH RARE GENETIC DISORDERS. HERE'S THE GOOD NEWS. HAD IS SO EXCITING BECAUSE NOTHING THAT'S BEEN DISCUSSED TODAY IS INSURMOUNTABLE. IN MY 20 YEARS, REACHING OUT AND RECRUITING PEOPLE FOR STUDIES AND KEEPING THAT HEARTBEAT OF COMMUNICATION GOING, IT'S NOT EASY BUT IT CAN BE DONE. SOMEONE SAID EARLIER IN THE DAY, THERE ARE SOLUTIONS THAT EXIST, AND I THINK WHAT'S GREAT ABOUT THIS FORUM IS, WE'RE BRINGING TOGETHER PEOPLE AND ANSWERS TO DISCUSS. TO YOUR POINT, WHAT'S GOING TO BE THE MOST DIFFICULT, WE CAN DO ANYTHING BUT WE CAN'T DO EVERYTHING YET. THERE'S THE POWER OF YET. SO WHEN WE START SOMEWHERE THAT CAN BE DONE. THE OTHER THING, I'M A SYNTHESIZER OF A LOT OF THINGS TO GET A BIG TEAM BEHIND DOING THINGS. THERE ARE PEOPLE IN OTHER ROOMS AROUND THE UNITED STATES AND THE WORLD TODAY THAT ARE THINKING ABOUT TECHNOLOGY AND HOW TOED A VANS SYSTETOADVANCE PEOPLE OF ALL TYPES OF SOCIAL SITUATIONS. LET'S GET PEOPLE TO DONATE. WE CAN DO THIS. THERE ARE -- IT'S A MATTER OF JUST CLEARING THE PATH AND RECRUITING THE RIGHT PEOPLE. THIS IS VERY EXCITING, AND THANK YOU FOR OPENING THIS FORUM UP TO A LOT OF VOICES. >> THANK YOU. I THINK WE HAVE A WORKING GROUP MEMBER WHO WANTS TO COMMENT. IT DID YOU WANT TO COMMENT? THERE WAS SOMEONE UP HERE NOT GETTING A MIC. >> WE HAVE A COUPLE AHEAD OF THEM. >> AFTER THESE TWO, WE THEED TO IT WRAP YOU. HUE. >> OKAY. HIGH. MY NAME IS J.B. SMALL EE. I'M FROM PCORI. ONE GROUP I HAVE NOT HEARD ANYBODY TALK ABOUT THIS MORNING IS PEOPLE WITH DISABILITIES WITH REGARD TO DISPARATE POPULATIONS AND PEOPLE WHO EXPERIENCE TREMENDOUS DISPARITIES WITH EQUITY AND ACCESS, SO I WAS WONDERING IF MAYBE THE PANEL COULD SAY A FEW WORDS ABOUT CONSIDERATION OF PEOPLE WITH DISABILITIES FOR THE PMI INITIATIVE. >> I THOUGHT I TRIED TO SAY THAT PRETTY EXPLICITLY ABOUT THE LARGE NUMBER OF YOUNG ADULTS TODAY WITH CHRONIC HEALTH CONDITIONS THAT CREATE DISPARITIES. THERE'S A HUGE -- OF MINORITY POPULATIONS IN THAT DWREUP SO WE KNOW DISABILITIES IS MUCH MORE COMMON IN PEOPLE OF COLOR, IT'S VERY CLEAR. WE'VE SORT OF IGNORED THAT FACT IN MUCH OF THE RESEARCH, I COMPLETELY AGREE WITH THAT, BUT HEY, THE EVIDENCE IS REALLY THERE, AND THOSE OF US WHO WORK IN CHILDHOOD DISABILITY KNOW THAT CLEARLY. >> I WORK WITH THE NATIONAL ALLIANCE FOR HISPANIC HEALTH. MY QUESTION HAS IT TO DO ON RELATION TO RACIAL AND ETHNIC GROUP, BY LOOKING BEYOND LIKE THEIR OWN DIVERSITY, WHEN LUKE YOU LOOK AT HOW DIVERSE HISPANICS ARE, AFRICAN-AMERICANS IN OTHER COMMUNITIES. SO WHAT HAS BEEN YOUR EXPERIENCE, AND I'M THINKING ABOUT CHILDREN, FOR EXAMPLE. DR. PARRIN. FOR EXAMPLE, RACE OF ASTHMA, LOOKING AT PUERTO RICANS, MEXICAN-AMERICANS, SO MAYBE YOU GUYS CAN TALK ABOUT YOUR EXPERIENCE WORKING WITH THE DIVERSE GROUP ALSO LOOKING BEYOND ONE ETHNIC GROUP. >> ONE THING COMES TO MIND. PHYSICIANS, WHEN THEY'RE SCREENING FOR DIET, I'M TALKING ABOUT CANCER, TEND TO LOOK AT KOREAN AMERICANS AND SEE PEOPLE WHO DON'T HAVE A LOT OF BODY FAT WHEN YOU ASK PASSIVELY DOWN THE LIST, DO YOU EAT VEGETABLES? YES. BUT KOREAN AMERICANS HAVE VERY HIGH RATES OF GASTRIC CANCER. SO I THINK IT'S EXTREMELY IMPORTANT, YOUR POINT IS WELL TAKEN, THAT WE DON'T LUMP PEOPLE TOGETHER AND ASSUME A HOMOGENEITY THAT ISN'T THERE. >> I THINK THAT'S AN IMPORTANT ISSUE, SOMETHING THAT I'VE TRIED TO IT ADDRESS EARLIER IN MY COMMENTS WHEN I TALKED ABOUT GENETIC ANCESTRY. THE HETEROGENEITY IN HISPANIC AND AFRICAN-AMERICAN POPULATIONS IS ENORMOUS, SO WE HAVE TO TAKE THAT INTO ACCOUNT IN ANY STUDY OR ELSE YOU CAN HAVE SERIOUS CONFOUNDING DUE TO STRATIFICATION AND SO I THINK THAT THERE ARE A LOT OF FOLKS WHO ARE INVOLVED IN THAT RESEARCH AND WHO SEE THE ROLE THAT ANCESTRY MAY PLAY IN TERMS OF SOME OF THESE OUTCOMES. I KNOW FOR INSTANCE -- IS LOOKING AT DRUG RESPONSE FOR ASTHMA AND SEEING SOME VERY STRONG SIGNALS RELATED TO ANCESTRY. SO THAT'S SOMETHING I THINK COULD EASILY BE ADDRESSED. >> I THINK I'VE BEEN INSTRUCTED TO TRANSITION TO THE NEXT PANEL, BUT I WILL SAY BECAUSE THE TOPIC OF THE WHOLE DAY IS INCLUSION AND EQUITY RELATED, REFRAME YOUR QUESTION AS IT APPLIES TO ANOTHER PANEL DURING A MEETING, SO I WOULD NOW LIKE TO FIRST OF ALL THANK OUR PANEL FOR REALLY PUTTING IN THE THOUGHT TO SHARE SOME IDEAS. THANK YOU. [APPLAUSE] AND THEN I WILL TURN THE PODIUM OVER TO DR. ESTABAN GONZALEZ BURCHARD WHO WILL MODERATE SESSION 4. THERE'S NO BREAK. >> GOOD MORNING. MY NAME IS ESTABAN GONZALEZ BURCHARD, AND I AM YOUR MODERATOR TODAY. I AM FROM UCSF. I AM A PHYSICIAN SCIENTIST PULMONARY SPECIALIST, STUDYING ASTHMA PARTICULARLY IN THE MINORITY POPULATION. WE HAVE THREE PANELISTS. I WILL ASK EACH PANELIST TO SAY ONE OR TWO SENTENCES ABOUT WHO THEY ARE OR WHAT THEY DO. AND THEN I WILL COME BACK AROUND AND I WILL GIVE A BRIEF OVERVIEW OF HOW I VIEW THE FIELD AND THE PROBLEMS THAT WE HAVE AT HAND. AND THEN I'LL ASK EACH PERSON, EACH PANELIST, TO SPEAK FIVE TO SEVEN MINUTES. AND FINALLY, WE'RE GOING TO BUILD THE SESSION AROUND ADDRESSING FOUR QUESTIONS THAT THE PANELISTS HAD RECEIVED, BUT THEN AT THE END, I WILL BE VERY STRICT ABOUT THIS, WE'RE GOING TO OPEN THIS UP TO THE AUDIENCE. THAT WE LIKE TO HAVE AUDIENCE PARTICIPATION NOT ONLY FROM YOU BUT ACTUALLY THE AUDIENCE OUT THERE AS WITH WE SEE IT ON TWITTER AND SOCIAL MEDIA. SO WITH THAT, I WILL BEGIN. SO CAN I HAVE EACH OF THE PANELISTS INTRODUCE THEMSELVES AND SAY ONE OR TWO SENTENCES ABOUT WHAT YOU DO? >> GOOD MORNING. LUCILLE ADAMS CAMPBELL. I AM AN EPIDEMIOLOGIST, ASSOCIATE DIRECTOR FOR MINORITY HEALTH AND HEALTH DISPARITIES RESEARCH FOR COMMUNITY HEALTH AND OUTREACH. >> HI, EVERYBODY. CAROL HOROWITZ FROM NEW YORK CITY, CENTER FOR HEALTH EQUITY AND COMMUNITY ENGAGED RESEARCH, AND THAT'S THE KIND OF RESEARCH I DO AS WELL AS BEING A PRIMARY CARE DOC. >> MY NAME IS KIANG LIU FROM NORTHWESTERN UNIVERSITY. AND FOR THE LAST THREE YEARS, I'VE BEEN INVOLVED IN SEVERAL LARGE LONGITUDINAL STUDIES SPONSORED BY CARDIOMESA, HISPANIC COMMUNITY HEALTH STUDY AND SOME OTHERS, SO MY FIELD IS EPIDEMIOLOGY SLASH -- DISEASE. >> GREAT. THANK YOU. SO I'M GOING TO TAKE TWO MINUTES AND JUST GIVE A BACKGROUND. WE SPECIFICALLY ASKED THE PANELISTS NOT TO -- I'M GOING TO TAKE LICENSE AND SHOW YOU SOME PICTURES. THIS IS THE -- THE TOPIC OF CONCLUSION IS VERY IMPORTANT. IT'S SOMETHING I'VE ACTUALLY MADE MY CAREER ON AND FOCUSED ON. PRIMARILY WE FOCUSED ON CHILDREN WITH ASTHMA. ASTHMA IS THE MOST CHRONIC DISEASE IN CHILDREN OF THE UNITED STATES. AND THIS IS THE MOST COMMONLY USED ALBUTEROL INHALER. THIS IS ACTUALLY IMPORTANT BECAUSE A LONG ACTING FORM OF THIS IS DESCRIBED IN THIS INSERT. THIS IS A PACKAGE INSERT THAT YOU GUYS GET AND I GET WHEN WE GET MEDICATIONS. IT'S THE FIRST THING WE THROW AWAY. I'LL AT THE YOU WHY YOU THROW IT AWAY. [INAUDIBLE] IF YOU LOOK AT THE TEXT, AND I'VE HIGHLIGHTED IT, YOU NEED A MAGNIFYING GLASS TO SEE IT, BUT IT SPECIFICALLY SAYS, IF YOU'RE AFRICAN-AMERICAN, AND YOU TAKE THIS MEDICATION, YOU HAVE A 7 FOLD INCREAS INCREASED RISK OF DYING. AND THEREFORE, IN ORDER TO DERIVE BENEFIT FROM THIS MEDICATION, YOU NEED TO TAKE ANOTHER MEDICATION. THE COMBINATION OF THE TWO IS ABOUT $350 A MONTH. THAT IS A TRAGEDY, AND THAT'S WHY WE NEED TO MAKE SURE WE HAVE GOOD REPRESENTATION IN ALL CLINICAL TRIALS. THIS IS WHY. BECAUSE WHEN WE LOOK AT DEATH RATES FOR ASTHMA IN THE UNITED STATES, WE SEE HUGE DISPARITIES. MEDICATIONS FOR ASTHMA HAVE NOT CHANGED IN 50 YEARS. WE CONTINUE TO DO THE SAME OLD SAME OLD IN POPULATIONS OUTSIDE THE UNITED STATES, GENERATE CLINICAL INFORMATION, BRING THAT DATA IN AND GENERALIZE IT TO THE REST. HOW ABOUT IF YOU'RE ASIAN? THIS IS THE PACKAGE INSERT FOR THE NUMBER ONE SEIZURE DISORDER MEDICATION. BUT IF YOU'RE ASIAN AND YOU TAKE IT, THERE'S A 4,000 INCREASED RISK OF YOU DEVELOPING A LIFE-THREATENING CONDITION CALLED STEVENS JONSSON SYNDROME, WHERE ALL YOUR SKIN SLOUGHS OFF ON THE INSIDE AND THE OW SIDE. IT PRIMARILY AFFECTS ASIANS. THIS IS THE FDA PACKAGE INSERT. SO YOU HAVE TO BE A GENIUS IN ORDER TO READ THROUGH THIS WHOLE THING AND THEN FIND THIS LINE THAT SAYS IF YOU'RE ASIAN, YOU NEED TO GET GENETICALLY TESTED. WE DON'T DO GENETIC TESTING IN THE UNITED STATES. IT'S A CALCULATED RISK. AND THAT'S A PROBLEM. BUT WE DO IT IN ASIA, AND SINCE THE INITIATION OF GENETIC TESTING, ALL CASES OF STEVENS JONSSON SYNDROME HAVE BEEN ABLATED. SO THESE ARE THE DEMOGRAPHICS OF THE UNITED STATES. CURRENTLY, 40% OF THE U.S. POPULATION IS NON-EUROPEAN. AND THIS IS WHERE WE'RE AT WITH RESPECT TO MODERN GENETIC STUDIES THAT HAVE BEEN DONE WORLDWIDE UP UNTIL 2011, 96% HAVE FOCUSED IN ON EUROPEAN POPULATIONS, 4% NON-EUROPEAN. THIS IS WHAT WE NEED TO ADDRESS. WE NEED TO FIX THIS PROBLEM. I'M A PULMONOLOGIST. WHAT WE DID WAS ASK THE QUESTION, HOW HAVE WE AT THE NIH DONE IN FUND RESEARCH, PULMONARY RESEARCH, IN THE LAST 22 YEARS, SINCE THE CONGRESSIONAL MANDATE REQUIRING THE INCLUSION OF MINORITY AND WOMEN. ON THE Y AXIS IS PERCENT OF PUBLICATIONS, ON THE X ACCESS IS THE YEAR. WE SEE THE TOTAL NUMBER OF -- HAVE GONE UP, BUT IN GENERAL, LESS THAN 4 1/2% OF ALL PUBLICATIONS AT LEAST WITH RESPECT TO PULMONARY DISEASE, WE REPLICATED THIS FOR ALL DISEASES, INCLUDE WHAT THE NIH CONSIDERS NON-EUROPEAN POPULATIONS OR MINORITY POPULATIONS. THIS IS A TRAVESTY. THIS IS NOT THE NIH'S FAULT. AND I TAKE RESPONSE AND I THINK THE SCIENTIFIC COMMUNITY SHOULD TAKE OWNERSHIP ON THIS BECAUSE WE'RE FALLING DOWN ON THE JOB. WE ARE NOT HOLDING OUR CRITERIA, WE'RE NOT HOLDING OUR INVESTIGATORS TO THE CRITERIA THAT THE NIH HAS SAID THAT REQUIRE AN INCLUSION OF MINORITY AND WOMEN IN RESEARCH. SO I TAKE RESPONSIBILITY BUT I ALSO WANT TO GIVE RESPONSIBILITY TO THE OTHER PANELISTS HERE THAT ARE ON STUDY SECTIONS. HAVING SAID THAT, I'D LIKE TO OPEN IT UP AND HAVE EACH OF THE SPEAKERS TALK ABOUT THE FOUR QUESTIONS THAT WE RECEIVED AND I WILL READ THEM. TO LET YOU KNOW, ONE OF THE QUESTIONS, ONE OF THE CHALLENGES THAT HAVE ARI SIN IN RECRUITING AND RETAINING DIVERSE AND DISADVANTAGED POPULATIONS ARE THE HISTORICAL PATTERNS OF CULTURAL DIFFERENCES ACROSS ETHNIC GROUPS, EDUCATION OR SOCIOECONOMIC STATUS, RELATED TO SHARING OF GENOMIC INFORMATION OR OTHER HEALTH DATA. WHAT ARE THE BEST PRACTICES IN OVERCOMING RECRUITMENT AND RETENTION ISSUES IN LONGITUDINAL ISSUE, GENETIC STUDY, AND HOW CAN THEY BE APPLIED TO PMI. SO I WILL ASK THE FIRST SPEAKER CLOSEST TO ME TO SPEAK AND YOU'VE GOT THE FIRST FIVE, SIX, SEVEN MINUTES. >> I'LL DO THE BEST THAT I CAN. I COME FROM THE PROSPECTIVE OF I'M A COP.I. FROM THE WOMEN'S HEALTH INITIATIVE, WE WERE ONE OF THE 10 MINORITY SITES. THAT'S GONE ON FOUR -- HAVING RECRUITED 59,000 BLACK WOMEN OVER 20 YEARS AND STILL GOING FROM -- FUNDED BY NCI. I DON'T FIND THE TITLE ACTUALLY THE ISSUES THAT I GO THROUGH IN TERMS OF CHALLENGES. I THINK WE HAVE SORT OF MASTER ITED IN SOME WAYS WAYS OF DEALING WITH COMMUNITIES, AND ONE THING IS, I'M AT GEORGETOWN. YOU THINK ABOUT GEORGETOWN AND YOU THINK ABOUT MINORITIES INCLUSION, YOU PROBABLY THINK IT'S AN OXYMORON, BUT WHEN I CAME THERE, THE IDEA WAS TO COLOCATE IN THE COMMUNITY, AND THAT HELPS BECAUSE WE ARE DEFINITELY PART OF THE FABRIC OF THE POPULATIONS THAT WE INTERESTED IN. BUT ALSO IN ROLES HAVING COMMUNITY ADVISORY BOARDS INVOLVING THE COMMUNITY, MAKING CERTAIN OUR COMMUNITY ADVISORY BOARD INCLUDES AND ENCOMPASSES THE RESIDENTS. ALSO DOING A NEEDS ASSESSMENT. I SPENT THREE YEARS DOING FROM GEORGETOWN, BECAUSE IT'S VERY IMPORTANT YOU ESTABLISH THIS AND NOT JUST GO FOR THE GRANT AND FIX THE -- YOU JUST HAVE PEOPLE IN THE GRANT JUST FOR THAT MOMENT. SO WE WANT TO BUILD THIS RUST AND I THINK WE'VE DONE A GOOD JOB, AND I THINK IT'S REALLY IMPORTANT THAT WE DO A NEEDS ASSESSMENT. WE HAVE TO KNOW WHAT THE COMMUNITY NEEDS. I THINK THAT'S THE ONLY WAY WE CAN DO IT. ONE OF THE THINGS THAT'S REALLY IMPORTANT AND I THINK IS A BIG BARRIER TO INCLUSION OF MINORITIES DOES NOT HAVE TO DO WITH STUDY DESIGN. PARTICULARLY THERE ARE THERAPEUTIC TRIALS, JUST TALKING ABOUT THE ELIGIBILITY CRITERIA. STUDY DESIGNS ARE BASED ON COOKIE CUTTER MODELS, HOW DO YOU DETERMINE THE ELIGIBILITY CRITERIA? WE HAVE TO UNDERSTAND IS IT BIOLOGICALLY PLAUSIBLE, SOME OF THE THINGS THEY'RE ASKING, AND IF IT'S MEANINGFUL. IF WE NEED TO SEE A CERTAIN LEVEL FOR -- RATES OR CERTAIN NUMBER OF HORMONE POSITIVE RECEPTORS, IS THAT ABSOLUTE CUT POINT -- IS IT MORE IMPORTANT TO LOOK AT A 15% CHANGE. SO WE HAVE TO THINK ABOUT THE EL ELIGIBILITY CRITERIA. MANY AFRICAN-AMERICANS GET EXCLUDED IF YOU TALK ABOUT CERTAIN THINGS, SO WE HAVE TO BE MORE ROBUST IN TERMS OF OUR ELIGIBILITY CRITERIA, AND THINK ABOUT IT NOS A NOT AS THE MOUSE MODEL, BUT IN REAL LIFE, THIS IS WHAT YOU GET. SO WE HAVE TO TAKE THAT APPROACH. ALSO I THINK WHAT WE HAVE DONE IS WE HAVE COME UP WITH SOME RAPID CLINICAL TRIAL DESIGN. WHEN PEOPLE COME IN FOR A STU CAN I AND THEY HAVE REALLY WORKED THEIR WAY -- TO COME INTO A STUDY, THE FIRST THING YOU SAY AFTER FIVE MINUTES, YOU'RE NO LONGER ELIGIBLE. THINK ABOUT WHY PEOPLE ARE NOT ELIGIBLE IN TERMS OF THEY MIGHT NOT BE ELIGIBLE BECAUSE SOME OF THEIR LIFESTYLE PRACTICES OR WHATEVER, OBESITY, WHATEVER IT IS, BUT WE STARTED TRYING TO CREATE SMALL SPINOFF CLINICAL TRIALS THAT ADDRESSES THE ISSUE AND NEEDS OF THE COMMUNITY. AGAIN GOING BACK TO WHAT'S BEEN DEEMED IMPORTANT FOR THAT INDIVIDUAL. ALSO WHEN YOU THINK ABOUT GETTING THE MESSAGE OUT TO PEOPLE, DISSEMINATION IS SO IMPORTANT. WE CREATED MINORITY HEALTH MATTERS NEWSLETS THAT WE DON'T MAIL OUT, WE HAND DELIVER THEM TO THE COMMUNITIES, TO THE GROCERY STORES, TO THE NEIGHBORHOODS, TO THE CHURCHES, SO THAT THE PEOPLE CAN GET THAT INFORMATION. BECAUSE AT OUR INSTITUTION, THINGS ARE MAILED TO THE ALUMNI, AND I KNOW IF YOU THINK ABOUT THE UNIVERSITIES THAT YOU WENT TO, THEY'RE NOT WHERE YOU'RE LIVING NOW, SO YOU MAILED EVERYTHING AWAY BUT NOBODY DOES ANYTHING LOCALLY. SO I THINK THAT FOR ME, THE IDEA OF THE PMI IS AN IMPORTANT IDEA BUT I'M NOT QUITE CERTAIN WHAT THE QUESTIONS WILL BE, I'M NOT REALLY CERTAIN AS EPIDEMIOLOGISTS, ARE BE DOING A LONGITUDINAL STUDY, ARE WE JUST TALKING ABOUT HAVING A -- HAVE THE CAPACITY WITH MAYBE A MILLION PEOPLE IN IT TO CREATE SMALLER STUDIES, SO THAT AMBIGUITY IN TERMS OF WHERE WRE GOING IS IMPORTANT BECAUSE WE DON'T EVEN THINK ABOUT SAMPLE SIZE BECAUSE WE DON'T KNOW WHAT THE QUESTIONS WILL BE AT THIS POINT. I THINK WHEN IT COMES TO BIOSPECIMENS, I WANT TO JUMP INTO THAT IN TERMS OF GENETICS THAT WE'RE TALKING ABOUT SO MUCH TODAY, PEOPLE SAY THAT MINORITIES AREN'T INTERESTED. IT'S ALL ABOUT THE EDUCATION. IT'S ALL ABOUT THE EDUCATION. IF YOU GET PEOPLE TO BUY IN, THINK MANY OF THESE THINGS CAN BE DONE, BUT IF YOU DON'T EDUCATE -- IT'S NOT JUST EDUCATING THE PARTICIPANTS. I HEARD DR. COLLINS SPOKE IN THE VERY BEGINNING ABOUT WE WANT TO MAKE CERTAIN WE GET THE BUY-IN AND CONTRIBUTIONS FROM THE PARTICIPANTS, BUT YOU KNOW, AS THE PARTICIPANTS BECOME MORE EDUCATED THAN THE PROVIDERS AND THE HEALTHCARE PROVIDERS, THEN WE'RE GOING TO HAVE ANOTHER DISPARITY BECAUSE THEY DON'T KNOW WHAT'S GOING ON, IT DOESN'T MATTER WHAT THE PARTICIPANTS DO, AND IF WE HAVE ALL THESE FANCY VARIANTS IN ORDER TO GIVE BACK TO THE PARTICIPANTS TO HAND TO THEIR DOCTORS, IT MIGHT GET PUT IN THE TRASH CAN. SO WE JUST WANT TO MAKE CERTAIN WE CONTINUE THAT SMED AND I THINK THAT CULTURAL RELEVANCY IS IMPORTANT. SOMETIMES WE WONDER -- I DO A LOT OF LIFESTYLE EXERCISE INTERVENTION NUTRITION INTERVENTION STUDIES FOR BREAST CANCER, WOMEN AT HIGH RISK FOR BREAST CANCER. I WOULDN'T DESIGN A STUDY FOR SWIMNG FOR BLACK WOMEN. WE'LL TALK ABOUT THE HAIR LATER, BUT I'M JUST -- I'M JUST SAYING THAT YOU HAVE TO ADDRESS CULTURAL RELEVANCY IN SOME OF THE DESIGNS. AND I HAD A KOREAN OLYMPIAN AS MY -- WHO WAS A SWIMMER, AND I SAID WE'RE NOT GOING TO DESIGN THAT STUDY TODAY. >> SO CAN I ASK YOU A QUESTION THEN? FOR ALL THE SPEAKERS COMING UP, I'D LIKE TO YOU SOMEHOW SHOW YOUR CREDENTIALS AS TO WHY YOU'RE AT THE TABLE SO THAT PEOPLE KNOW THAT YOU ACTUALLY HAVE EXPERIENCE, THEN FOR YOU TO SHARE YOUR EXPERIENCES. >> QUICK CLARIFICATION BECAUSE I DIDN'T WANT THE AMBIGUITY ABOUT THE PLAN FORT MILLION STRONG COHORT TO BE PERSISTENT. BASICALLY WE DO INTEND FOR THIS TO AB LONGITUDINAL STUDY WITH ONGOING COLLECTION FROM ALL THE PARTICIPANTS FOR A VERY LONG PERIOD OF TIME THAT. IS THE DESIGN WE'RE AIMING FOR. IT MAY VERY WELL ALSO BE A FOUNDATION FOR OTHER SPECIFIC TRIALS OF INTERVENTIONS, BE THEY THERAPEUTICS OR DEVICES OR WHATEVER, BUT THE MAIN STUDY IS A LONGITUDINAL COHORT. >> SO THE LONGIT COHORT, KEEPING THAT IN MIND, THINKING ABOUT YOUR EXPERIENCE AS PANELISTS, YOU WERE INVITED BECAUSE YOU HAVE A TRACK RECORD. MY TRACK RECORD IS WE RECRUITED THE LARGEST PEDIATRIC STUDY FOR ASTHMA, GENE ENVIRONMENT STUDY. WE HAVE RECRUITED 11,000 INDIVIDUALS WHO HAVE HAD 15 YEARS OF EXPERIENCE, GOOD, BAD, UPS AND DOWNS, I WOULD LIKE TO SHARE THAT WITH THE COMMITTEE. EACH OF YOU HAVE EXPERIENCES, I'M GOING TO GO TO THE NEXT SPEAKER. CAN YOU START OFF WITH WHAT YOU HAVE DONE, AND HOW CAN WE AS PANELISTS BENEFIT FROM THAT? >> SURE. SO I HAVE BEEN RECREWS KREUTING AND RETAINING DIVERSE POPULATIONS INTO MULTISITE TRIALS TO PREVENT AND CONTROL CHRONIC DISEASES. MOST OF MY WORK IS FOCUSED IN NORTHERN MANHATTAN IN THE SOUTH BRONX. SO THAT'S THE WORLD I LIVE IN. I'M RELATIVELY NEW TO GENOMICS BUT I'M GOING TO SHARE WHAT MY EXPERIENCE HAS BEEN LIKE, GIVE SOME SUGGESTIONS, THEN TELL A STORY ABOUT OUR GENOMICS STUDY WE'RE WORKING ON RIGHT NOW. SO UNFORTUNATELY UNLIKE THE PANEL HAVING THE PLEASURE OF SITTING WITH RIGHT NOW, I'M A RATHER TYPICAL HEALTH EQUITY RESEARCHER. I CARE, I WORK HARD AND I'M A WELL PAID WHITE PROFESSIONAL WHO DRIVES HER HIGH BRE HYBRID TO THE SUBURBS AFTER A DAY OF WORK IN HARLEM, SO I AM AN OUTSIDER IN EVERY WAY, I'M GOING TO BE A LOT OF WHAT RESEARCHERS LOOK LIKE. SO THIS IS THE RESEARCH WE DO AND I WANT YOU TO IMAGINE, YOU'RE AN OLDER AFRICAN-AMERICAN WOMAN WHO LIVES IN HARLEM, YOU'RE SICK, YOU'RE ECONOMICALLY INSECURE, RACISM IS YOUR EVERY DAY. NOW WHAT DO YOU KNOW? YOU KNOW RESEARCHERS BEHAVE BADLY IN THE PAST. YOU HAVEN'T HAD THE MOST POSITIVE EXPERIENCES GETTING HEALTHCARE AND YOU FIGURE THE SAME KIND OF FOLK WHO TAKE CARE OF YOUR MEDICAL PROBLEMS ARE PROBABLY GOING TO BE THE ONES RESEARCHING YOU. YOU KNOW ALL ABOUT DRIVE BY HELICOPTER RESEARCHERS, LEAVING NO TRACE. THE STUDIES YOU KNOW ABOUT HAPPENING THAT WAY, YOU DON'T SEE THEM MAKING YOUR COMMUNITY ANY BETTER. ONE OF MY COMMUNITY LEADERS SAID TO ME 15 YEARS AGO, YOU GUYS KEEP COMING IN, YOU LEAVE, WE ARE STILL FAT AND SICK. NOTHING IS HAPPENING. NO ONE YOU KNOW HAS GOTTEN INFORMATION BACK ABOUT A STUDY THEY'VE BEEN PART OF. NOT EVEN A NOTE WHAT THE RESEARCH TEAM LEARNED WHAT THEY'LL DO WITH IT. YOU DON'T FEEL THE QUESTIONS WE ASK ARE ONES YOU'RE INTERESTED IN. NO UP WITNO ONE HAS EVER ASKED YOU WHAT YOU THINK WE SHOULD BE ROOT SECHING. THE LITTLE YOU'VE SEEN OF RESEARCH, YOU DON'T THINK THERE'S ANYONE LIKE YOU STEERING THE SHIP. INSTEAD YOU SEE PEOPLE LIKE ME, NOT FROM THE COMMUNITIES AND NOT FROM THE RACIAL ECONOMIC SOCIOECONOMIC GROUPS THAT DISPROPORTIONATELY AND UNJUSTLY ARE IMPACTED BY POOR HEALTH. AND YOU'VE EXPERIENCED MANY TIMES THAT WE DOCTORS AND PROBABLY RESEARCHERS BLAMED YOU FOR YOUR ILLNESS. IT'S ALL NONCOMPLIANCE, IT'S LOW LITERACY, IT'S ATTITUDE LIKE FATALISM AND YOU DON'T WANT TO BE PART OF RESEARCH THAT FURTHER DISPARAGES YOUR COMMUNITY. AND YOU'RE NOT 100% SURE ABOUT RESEARCH, WHAT IS IT? COME TO THINK OF IT, YOU CAN'T NAME ONE THING IN YOUR WORLD THAT'S BETTER BECAUSE OF RESEARCH. THERE MIGHT BE A LOT OF THINGS BUT NO ONE'S EVER REALLY MADE IT TOTALLY CLEAR TO YOU. SO NOW IMAGINE SOMEONE FROM MY TEAM CALLS YOU AT NIGHT AT HOME, OR INTERCEPTS YOU AT A DOCTOR VISIT AND SAYS, AND ASKS YOU IF HE, A TOTAL STRANGER, CAN ASK YOU A BUNCH OF QUESTIONS, DO SOME MEASUREMENTS, AND TAKE YOUR BLOOD. WHAT WOULD YOU SAY? SO I THINK THERE ARE WAYS WE CAN DO BETTER AND I KNOW EVERYONE HERE ON THE PANEL HAS DONE BETTER. IT'S BUILDING AS WE SAID HERE TEAMS COMMIT TODAY RESEARCH AND PARTICIPANTS, INCLUDING PEOPLE FROM THE TARGET COMMUNITY. WHILE RARE DISEASE ADVOCATES ARE GROUND BREAKERS AND ESSENTIAL WHEN YOU MOVE INTO MY WORLD OF CHRONIC DISEASE, COMMON CHRONIC DISEASES, WE NEED TO ENGAGE THOSE PEOPLE AND IT'S HARDER TO ENGAGE. WE NEED TO ALWAYS LOOK THROUGH PARTICIPANTS' LENSES. PATIENT CENTEREDNESS DOES NOT DAMAGE RESEARCH RIGOR, IT ENHANCES IT. WE NEED TO DESIGN EVERYTHING WITH INCLUSIVENESS IN MIND. PEOPLE SHOULD WANT TO JOIN. YOU KNOW THE DIFFERENCE BETWEEN A TEAM AND A PICKUP GAME, RIGHT? A TEAM IS IF IT YOU'RE PART OF IT AND YOU WEREN'T THERE, PEOPLE GO HEY, WHAT HAPPENED, WHERE WERE YOU? THIS HAS TO BE TEAMS. PEOPLE HAVE TO BE PROUD TO JOIN. THEY HAVE TO HAVE THEIR T-SHIRT SAYING SOMETHING LIKE I'M PART OF THE PMI. HOW CAN DID YO DID YOU GET IN? I WANT TO GET IN. NOT THAT SOMEBODY GAVE ME 20 BUCKS AND I DIDN'T KNOW IT WAS ALL ABOUT. I THINK WE NEED TO BE REALLY HONEST ABOUT IT. WE NEED TO FIGURE OUT A WAY TO HAVE A JOURNAL SUPPLEMENT OR WE HAVE A MEETING AND ALL COME OUT AND TALK ABOUT WHAT DIDN'T WORK. BECAUSE RIGHT NOW WE CAN'T GET IT PUBLISH AND WE DON'T WANT TO TALK ABOUT IT BECAUSE WE'RE AFRAID WE WON'T GET MORE RESEARCH FUNDING. WE ARE UNDER TREMENDOUS PRESSURE TO RECRUIT PEOPLE FOR OUR STUDIES. I KNOW LOTS OF PEOPLE WHO HAVE LOST FUNDING BECAUSE THEIR STUDY DIDN'T RECRUIT ENOUGH PEOPLE, BUT WE CAN'T BOW TO THAT PRESSURE BY JUST CHERRY PICKING EASY TO RECRUIT PATIENTS. WE NEED TO USE THIS PRESSURE IT TO COLLABORATE. WE NEED TO SPEND AS MUCH TIME AND EFFORT AND CREATIVITY ON RECRUITMENT AS WE DO INVITING PEOPLE TO A PARTY OR GETTING PEOPLE TO BUY COOKIES AT A BAKE SALE. A LOT TIMES THEY'RE AN AFTERTHOUGHT. WE NEED TO SHARE OUR RESULTS WITH PARTICIPANTS IN COMMUNITIES. I AM DPLEETLY AND CHRONICALLY IN DISBELIEF THE NIH DOES NOT SEND LETTERS TO PEOPLE IN OUR STUDIES TELLING THEM WHAT WE LEARNED. WE SHOULD DO THAT. AND WE NEED TO DEMOM RAH ADVERTISE DATA. IT IS AS MUCH OURS AS IT IS THEIRS. I THINK WE'VE LEARNED A LOT. WITH NHGRI FUNDING, WEE PARTNERING WITH COMMUNITY LEADERS AND CL NICHES FROM A LARGE NETWORK OF COMMUNITY HEALTH CENTERS IN THE SOUTH BRONX. WHAT WE'RE DOING IS WE'RE TESTING PEOPLE OF AFRICAN ANCESTRY FOR GENETIC VARIANT OF AOE1 THAT INCREASES THEIR RISK FOR KIDNEY FAILURE. WE'RE RETURNING THE RESULTS TO PATIENTS AND THEIR PROVIDERS THROUGH THE EHRs, AND WE'RE FOLLOWING THEM OVER TIME TO SEE THE IMPACT OF IT. SO AS A DISPARITIES REACHER RESEARCHER APPROACHED ME WITH THIS CONCEPT, I SAID IT'S CRAZY. WHAT GENOMIC ETHICIST SAID DO NOT DO THIS, YOU WILL MOVE BACK DECADES IF YOU TOUCH THIS QUESTION. I THOUGHT THEY MIGHT BE RIGHT. BUT AS YOU HEARD EARLIER FROM TONY COLES AND RICK KITTLES, ANCESTRY IS BIOLOGY THERE, RIGHT? SO WHAT DO I DO AND HOW DOES THE COMMUNITY REACT? SO AS I HOPE PMI WILL DO, I FIRST ASKED PEOPLE I TRUSTED. THE FIRST PERSON I ASKED IS MY COLLEAGUE, I SAID, THERE'S A GENE VARIANT PRESENT IN 1 OF 7 PEOPLE THAT INCREASES THEIR RISK OF KIDNEY FAILURE BY FIVE FOLD. SHOULD YOU AND I GET INTO RESEARCH ABOUT THIS? AND WHAT HE SAID TOTALLY SURPRISED ME. HE SAID, MAYBE NOW, WHEN WHITE DOCTORS SEE BLACK PEOPLE ON DIALYSIS, THEY WON'T THINK WE DIDN'T TRY HARD ENOUGH. THEY'LL RECOGNIZE THERE'S MORE TO SICKNESS THAN BAD BEHAVIOR. I NEVER THOUGHT ABOUT THAT. I WAS A WHITE PERSON SAYING, NO, DON'T DO GENETIC RESEARCH ON BLACK PEOPLE. I DIDN'T KNOW ANYTHING. SO WE'VE ACTUALLY FOUND THAT MORE THAN EHEBELIEVED THIS. WE GOT FUNDED, BUILT A BOARD OF COMMUNITY LEADERS, CLINICIANS, PATIENTS WHO HAVE THE VARIANT, AND WE TOOK EVERY RESEARCH STEP TOGETHER. WE DID EVERY RIGOROUS FORM OF RESEARCH TO TEST ALL OUR STEPS SO WE KNOW WHAT TO EXPECT AND WE CAN COULD MAKE CORRECTIONS. OUR PARTICIPANTS ARE PATIENTS AND LIKE YOU WERE SAYING, THE FQAC CLINICIANS, BECAUSE A LOT OF CLINICIANS ARE UNFAMILIAR AND UNCOMFORTABLE WITH RESEARCH. EVERY ACTION WE TAKE HAS INCLUSIVENESS IN MIND. THE BOARD -- WE DESIGNED IN CONSENT FORMS. THE BOARD GOT THE IRB TO CHANGE THEIR BOILERPLATE LANGUAGE. I COULDN'T DO THAT. WE HAVE WELL DESIGNED MARKETING MATERIALS. WE PHONE, WE TEXT YOU AT NIGHT ON WEEKENDS, IN THE HOSPITAL, IN THE NEIGHBORHOOD. WE HAVE A TEAM OF RECRUITERS FROM THE COMMUNITY WHO ARE EQUALLY COMMITTED. WE HAVE AN APP YOU CAN GO ON, WHICH WE'RE FINISHING BUILDING, THAT SHOWS YOU WHAT RESEARCH IS, WHAT IT MEANS. THERE'S A VERBAL CONSENT FORM. YOU GET THE RESULTS OF EVERYTHING, AS DOES YOUR HEALTH PROVIDER. WE STUDY ACTIONABLE THINGS AND WE DON'T GIVE PEOPLE CONFLICTED INSIGHT, YOU HAVE THIS AND THERE'S NOTHING YOU CAN DO. WE LEARNED HOW TO EXPLAIN GENES. FOLKS DON'T NECESSARILY WANT A WHOLE DISSERTATION ON GENES, AND WE LEARNED THE COMMUNITY HAS QUESTIONS TO ASK. LIKE THE RELATIVELY AND INTERACTIVE -- BODY MASS INDEX, POVERTY, STRESS, AD ADHERENCE, THE ENVIRONMENT, AND PERCEIVED RATISM AND HOW THESE IMPACT BLOOD PRESSURE AND KIDNEY FUNCTION, AND TOGETHER TOGETHER, WE'RE GOING TO FIND OUT. THANK YOU. >> THANK YOU. [APPLAUSE] >> FOR THE LAST 30 YEARS, HI SERVED AS THE P.I. FOR THE CHICAGO CARDIAC CENTER, THE CARDIAC STUDY -- CAUCASIAN HAVE AFRICAN-AMERICAN AND WE RECRUITED ANYWHERE 18 TO 30, AND NOW AFTER 30 YEARS, THAT'S A LONG TIME NOW, MIDDLE AGE. ALSO I'M CURRENTLY SERVING AS P.I. FOR THE MESA STUDY, WE HAVE FOUR DIFFERENT ETHNIC GROUPS, CAUCASIAN, AFRICAN-AMERICAN, CHINESE AMERICAN, AND HISPANIC AMERICAN. SO I JUST WANT TO SHARE SOME OF THE EXPERIENCE OF OTHER RECRUITMENT AND RETENTION BECAUSE THAT'S WHAT WE WERE ASKING TO DO OF THESE COHORTS. WELL, I THINK IT'S A GOOD IDEA FOR THIS LARGE RESEARCH STUDY TO INCLUDE THE EXISTING COHORT, AS WELL AS YOU'RE TAKING ADVANTAGE OF THE HMOs AND SO ON TO RECRUIT PEOPLE, BUT I THINK A MAJORITY OF THE PARTY'S BEEN PROBABLY STILL FROM THE COMMUNITY. ONE OF THE IMPORTANT THINGS, HOW DO YOU REACH THEM, AND HOW DO YOU RECRUIT THEM. I THINK ONE OF THE CHALLENGES IS THE TRUST. I THINK, LUCILE, ALL THE PEOPLE MENTIONED ABOUT TRUST. THE MEMORIES, IT'S NOT A HISTORICAL, BUT NOW YOU USE EMAIL TO RECRUIT, TELL IT FOARNTION LETTER, SO ON. THERE'S SO MANY SCAMS, THEY ALL DON'T KNOW WHETHER IT'S REAL OR NOT, SO THAT'S REALLY THE PROBLEM. I THINK REALLY, TO GET TO THE COMMUNITY, NOT ONLY GET THE COMMUNITY ORGANIZATION SUPPORT BUT YOU REALLY NEED TO PUBLICIZE THE STUDY AND THE PURPOSE OF STUDY, HOW DO YOU DO THAT? YOU PROBABLY WANT TO HAVE A FLYER IN EVERY CLINIC, CHURCH, COMMUNITY ORGANIZATION AND SO ON TO LET PEOPLE KNOW WHAT THE STUDY IS ABOUT. AND YOU TARGET THE COMMUNITY WHEN YOU DO THAT. ALSO YOU PROBABLY WANT TO GIVE A LOT OF LECTURE, THAT'S WHAT I DID WHEN I RECRUIT THE CHINESE -- IN MESA, I GAVE 10 LECTURES. I WENT TO -- I THINK THIS MORNING SOMEBODY MENTIONED ABOUT THE WOMEN, IT'S VERY IMPORTANT, ACTUALLY I WENT TO SEVERAL CHINESE WOMEN ASSOCIATIONS AND THAT'S TRUE, IT'S VERY HELPFUL. BUT ANYWAY, WENT TO CHURCHES AND COMMUNITY CENTER IT. I THINK THIS IS VERY IMPORTANT TO PUBLICIZE THE STUDY. THEN YOU CAN -- AND THEN YOU QUALIFY THE PHONE CALL TO RECRUIT PEOPLE. IF YOU DON'T DO THAT, THEY ARE GOING TO THROW AWAY THE -- THEY HAVE CALLER ID, THEY HAVE UNLISTED NUMBER, YOU'RE NOT GOING TO BE ABLE TO REACH THEM. SO THIS IS THE PROBLEM. AND HOW DO WE REACH THE COMMUNITY BECAUSE HOW DO WE GET THE NAMES. THERE ARE SOME COMMERCIAL COMPAHEY PROVIDE THE NAME OF THE RESIDENTS IN THE COMMUNITY, AND THEY GIVE YOU THE ADDRESS, NAME OF HOUSEHOLD, PLUS THEY GIVE YOU THE NUMBER AND SO ON. YOU CAN TRY TO DO THAT. WHEN WE'VE USED THAT IN SOME OF THE STUDY, WE SEE WHETHER THEY ACTUALLY COVER PRETTY MUCH THE AREA AND THE RESULT IS PRETTY MUCH COVERED. THEY MISSED A LITTLE BIT HERE OR THERE, BUT IT'S PRETTY MUCH COVERED. I'M NOT TRYING TO -- FOR DOING THAT BUT THAT'S ONE WAY -- ALSO FOR THE OLDER PEOPLE, WE USE THE CMS, THE INFORMATION, TRY TO GET A LETTER AND SO ON, THE SAME LETTER, TO RECRUIT, AND IT HAS BEEN QUITE SUCCESSFUL. IN TERMS OF THE RETENTION, I THINK THE RETENTION IS VERY IMPORTANT, YOU KNOW, ENCARDIA, FOR EXAMPLE, AFTER 25 YEARS, CURRENTLY WE'RE DOING THE THIRD YEAR 30, BUT AT YEAR 25, THAT'S THE LAST -- STATISTIC, 74.4% CAME BACK TO RECEIVE THE EXAM, THE YEAR 25 EXAM. EVERY FIVE YEARS, WE PROVIDE AN EXAM. AND WE STILL HAVE CONTACT 88% OF THE PEOPLE WHICH WE HAVE A CLOSE FOLLOW-UP. SO A LITTLE LOWER GAIN IN THE AFRICAN-AMERICAN BUT HIGHER GAIN IN CAUCASIAN. HOWEVER, I WANT TO MENTION THAT FOR YOUNGER ADULTS, AFRICAN-AMERICAN MEN IS A CHALLENGE. BECAUSE THEY'RE -- THE CELL PHONE NUMBER CHANGES, SO WE HAVE TO PAY ATTENTION AND FIND A GOOD WAY OF HOW TO KEEP THEM. IN TERMS OF THE SECOND QUESTION RELATED TO GENETICS, WE DID THE -- WE ASKED THEM ABOUT WHETHER THE LETTERS TO STORE THE DNA TO DO THE GENETIC RESEARCH IN THE FUTURE, SO BOTH MESA AND -- VERY HIGH PERCENT -- MAY IS A, 98.9% OF THE HISPANIC AMERICANS AGREED TO PARTICIPATE, 97 OF THE CAUCASIAN AND CHINESE AMERICAN AGREED, AND 93.3% OF THE AFRICAN-AMERICANS AGREED. FOR CARDIAC, HIGHER BOTH CAUCASI AND AFRICAN-AMERICAN, 97-SOME PERCENT AGREED, SO IT'S A VERY HIGH PERCENT AGREED. BUT OF COURSE THIS IS DIFFERENT FROM PREVIOUS -- THESE ARE THE PEOPLE WHO ARE ALREADY PARTICIPATING IN THE STUDY, AND SO THEY TEND IT TO BE MUCH HIGHER. BUT THAT SHOWS NO MATTER WHICH ETHNIC GROUP SEEMS TO BE THEY TEND TO AGREE WITH -- ALSO THIS MORNING, I NOTICED THAT IN THE PREVIOUS LECTURE, IN THE SURVEY THAT YOU IDENTIFIED, PEOPLE WILL NOT BE -- THE IMPORTANT THING IS THEY WANT TO KNOW THE RESULTS. WE ALWAYS GIVE THEM RESULT ESPECIALLY NO MORE RESULT, THE TRAINING ABNORMALITY, WE GIVE TO THEM AND IF THEY AGREE, WE SEND TO THEIR PHYSICIANS. IF THEY DON'T HAVE PHYSICIAN, WE TRY TO MAKE SOME REFERRAL, MAKE OUR ARRANGEMENT FOR THEM. AND THEY PAY FOR THAT, WE DON'T PAY FOR THAT. BUT I WAS THINKING ABOUT ONE IMPORTANT THING IS RELATES TO GENETIC STUDY. THE ACTIONABLE GENETIC ABNORMALITY, THAT'S PROBABLY DIFFERENT FROM THE CLINICAL ABNORMALITY. BECAUSE THAT INVOLVES THEIR FAMILY, THEIR DIRECT FAMILY. SO FAR WE DON'T HAVE A GOOD SON TO THAT, HOW DO YOU DO THAT, BECAUSE IN SOME OF THE STUDY WE'RE DOING, WE TOLD THEM THAT WE ARE GOING TO PROVIDE -- YOU'RE SUPPOSED TO HAVE THIS VERIFIED BY -- CERTIFIED LAST AND PROVIDE SOME GENETIC COUNSELING, BUT THAT COSTS A LOT OF MONEY. SO FAR WE DON'T HAVE A GOOD SOLUTION. SO FOR THIS LARGE STUDY, WHAT IS GOING TO BE THE SOLUTION, I THINK -- BECAUSE IF YOU JUST GIVE THE RESULT AND THEY GET A RESULT, THEY DON'T KNOW WHAT TO DO AND THEY'RE CONCERNED ABOUT THEIR FAMILY, IMMEDIATE FAMILY, AND THAT COULD BE A PROBLEM THAT WE'RE NOT WILLING TO CONTINUE TO PARTICIPATE. >> QUESTIONS ARE ROLLING IN, AND I WANT TO TAKE -- WE HAVE SIX MINUTES, AND THEN WE WANT TO OPEN THEM UP TO THE PARTICIPANTS IN THE AUDIENCE OUT THERE. SO ONE OF THE THINGS THAT I THINK IS IMPORTANT FOR US IS EACH OF US HAS OUR OWN INDIVIDUAL EXPERIENCE IN RECRUITING. I RECRUITED 10,000 MINORITY CHILDREN. I THOUGHT I WAS ON A ROLE SO I THOUGHT I'D RECRUIT ASIANS AND I DIDN'T REALIZE THAT I WASN'T ASIAN AND THE ASIAN COMMUNITY LED AT ME AND SUCH SO WHEN I ACTUALLY BEAT THE BAIFMENT PAVEMENT AND WENT TO TRY TO GET COMMUNITY BUY-IN, I COULDN'T, SO I FAILED. THAT ACTUALLY -- I KNOW IT'S UNG IN CHEEK, BUT IT BRINGS UP AN IMPORTANT POINT. MANY TIMES THERE'S A TREMENDOUS -- THERE IS A IT -- NOT MANY TIMES. THERE IS A TREMENDOUS DISCONNECT IN WHO'S DOING THE RESEARCH AND WHO'S BEING STUDIED. CURRENTLY MINORITIES MAKE UP -- URMs MAKE UP -- THIS INCLUDES ASIANS, ABOUT 10% OF ALL SCIENTISTS IN THE UNITED STATES THAT ARE FUNDED BY THE NIH. SO IT'S NOT GOING TO HAPPEN, BUT MY QUESTION TO THE PANELISTS, DO THE TEENS NEED TO CONNECT THE COMMUNITY IN WHICH THEY'RE DOING THE INVESTIGATION, AND IF NOT, HOW DO WE GET AROUND IT? >> LET ME JUST START WITH THE TEAMS PROBABLY ARE NOT GOING TO IT REFLECT THE COMMUNITIES BASED ON THE PIPELINE, I THINK IT'S PORP TO DO COMMUNITY HIRES. I MADE CERTAIN THAT MY TEAM DOES REFLECT THE COMMUNITY. IT MIGHT NOT BE AT THE P.I. LEVEL, IT IS WITH ME, BUT AT THE P.I. LEVEL IF GENERAL, BUT HAVE HAVING -- I RECRUIT FROM THE COMMUNITY, HIRE FROM THE COMMUNITY, AND MAKE CERTAIN THOSE INDIVIDUALS BECOME OUR PEER ADVOCATES FOR PROMOTING OUR STUDIES. THE IDEA THAT WE HAVE ORGANIZATIONS THAT WE'VE BOUGHT BROUGHT IN AND PARTNERED WITH AND WE'VE HIRED THE INDIVIDUALS FROM THOSE COMMUN, WE HAVE MET OUR GOAL FOR RECRUITMENT OF ALL OF OUR CLINICAL TRIALS, BUT IT'S BECAUSE THE FACE THAT THEY SEE IS SOMEBODY THAT THEY ARE FAMILIAR WITH, COMFORTABLE WITH, AND ALSO WE SPEND A LOT OF TIME EDUCATING AT EVERY LEVEL. >> SO FOR ALL YOU GUYS, I'M GOING TO PUT ON MY REVIEWER HAT, BECAUSE I SPENT SIX YEARS ON STUDY SECTION, AND I HAVE A RESPONSE FOR EVERY SOLUTION YOU HAVE. SO THE QUESTION IS, YOU'RE GOING TO ASK FOR MORE MONEY TO DO MINORITY RECRUITMENT. IS THAT FAIR TO FOLKS THAT ARE NOT STUDYING MINORITIES? >> LET'S GO BACK TO BEFORE WOMEN AND MINORITIES WERE ENVOGUE IN NIH IN 1993. NO ONE HAS EVER CARED BEFORE, SO I THINK IT'S IMPORTANT THAT WE DO ASK FOR THE MONEYS THAT ARE NEEDED TO BE SUCCESSFUL TO MEET OUR RECRUITMENT GOALS. IT'S NOT ABOUT BECAUSE WE WANT TO IT GET MINORITIES AND STUDIES NEEDING MORE MONEY, IT'S WHAT IS ACTUALLY REQUIRED TO BE SUCCESSFUL. WHEN PEOPLE FUND THE STUDIES THAT HAVE -- YOU HAVE TO HAVE SO MANY PERCENTAGES OF MINORITIES IN A STUDY, FOR EXAMPLE, AND THEY'RE NOT WILLING TO PAY FOR THE RECRUITMENT COSTS, YOU'RE GOING TO BE UNSUCCESSFUL. I'VE BEEN A REVIEWER FOR PROBABLY 25 YEARS. >> WHETHER OR NOT YOU INCLUDE MINORITIES INTO YOUR STUDY SECTION IS CONSIDERED A REVIEW CRITERIA BUT IT'S THE LAST TIME AND OFTENTIMES THE GRANT HAS ALREADY BEEN APPROVED BEFORE WE GET TO THAT CRITERIA. SO YOU'RE SAYING WE NEED TO REVISE THE NIH STUDY SECTION. IS THAT WHAT YOU'RE SAYING? >> PEOPLE WANT MINORITIES IN STUDIES. I THINK IT'S VERY IMPORTANT THAT THEY UNDERSTAND THAT YOU HAVE TO PAY THE PEOPLE TO HELP PROVIDE THE SUPPORT FOR THE STUDY. AND IT MIGHT BE AT THE COMMUNITY LEVEL, AND OFTEN I'VE SEEN WHERE COMMUNITY LEVEL PAYMENTS HAVE BEEN CUT BACK BECAUSE THE REVIEWERS DIDN'T THINK IT WAS FEASIBLE OR THEY SHOULD BE DOING IT -- >> I'M GOING TO OPEN IT UP, BUT I WANT CONCRETE POSITIVE SUGGESTIONS. HOW ARE WE GOING TO FIX IT, OND HOW HAVE YOU FIXED IT IN THE PAST? >> I JUST WANT TO SAY ABOUT MINORITY RECRUITMENT OR RECRUITMENT, OTHER TYPES OF POPULATION THAT WE'VE TALKED ABOUT LOTS OF DIFFERENT KINDS OF POPULATIONS THAT RUNDREPRESENTED IN RESEARCH. IT'S NOT NECESSARILY MORE MONEY, IT'S DIFFERENT MONEY. SO IF I LOOK AT THE FACT THAT LIKE YOU GUYS, MY TEAM IS VERY REPRESENTATIVE OF THE COMMUNITY AND MY TEAM INCLUDES FACULTY, RECRUITERS, AND COMMUNITY MEMBERS WHO ARE THE COMMUNITY, I'M NOT SAYING IT COSTS ME MORE MONEY BECAUSE I LOOK AT MY NEIGHBOR WHO'S NOT DOING THAT AND SHE'S NOT MEETING HER RECRUITMENT NUMBERS, SHE'S NOT RETAINING HER PATIENTS AND I AM. I FIND OUR TRACK RECORDS WILL SHOW THAT WE SUCCEED IN RESEARCH AND THAT'S WHAT WE'RE PAYING FOR. SO IN TERMS OF EFFICIENCY AND EFFECTIVENESS, I THINK THE MONEY IS WELL SPENT. >> SO YOU JUST POINTED OUT A PROBLEM THAT WAS RAISED EARLIER. YOU HAVE TWO FUNDING GROUPS, ONE IS RECRUITING AND ONE'S NOT, THEY BOTH SET OUT TO RECRUIT. WHAT SHOULD WE AS A SCIENTIFIC COMMUNITY AND WHAT SHOULD THE NIH DO WHEN YOU HAVE SOMEONE THAT'S NOT MEETING THEIR RECRUITMENT GOALS? I NEED AN ANSWER. [LAUGHTER IT] >> YOU HAVE THE DIRECTOR OF THE NIH HERE. >> I DON'T -- >> I THINK WE NEED HELP. I THINK WE NEED TO BE HONEST WHEN WE'RE HAVING TROUBLE. I'M DEVELOPING AN APP WITH COMMUNITY PARTNERS. MY PARTNERS HAVE NEVER DEVELOPED AN APP BEFORE. MY PEOPLE ARE GOING TO ALLOW ME OF ONE YEAR OF TAKING A DOLLAR SO I CAN GET MY ACT TOGETHER IT AND THEN GO BACK LATER. SO THERE HAS TO BE STRETCHES OF MLS WHEN WE'RE DEALING WITH DIFFERENT POPULATIONS. IT'S NOT LIKE YOU'RE BAD, YOU LOSE ALL YOUR MONEY. IT MIGHT BE YOU NEED A LONGER TIME, WE'RE NOT GOING TO GIVE YOU MORE MONEY BUT WE'LL LET YOU STRETCH IT OUT DIFFERENTLY. I THINK WE NEED TO HELP YOU OUT. YOU SHOULD BE HELPING PEOPLE OR TRYING TO DO IT -- >> WE HAVE TWO DIFFERENT MODELS. WE HAVE A MODEL, THE BOOTS ON THE GROUND MODEL HERE, AND -- NATIONAL EFFORTS. SO WHAT HAS BEEN YOUR EXPERIENCE? >> THERE ARE SEVERAL QUESTIONS -- THE STAFF, I THINK THE P.I. DOESN'T HAVE TO BE EXACTLY THE SAME REPRESENTING THE COMMUNITY. AS YOU KNOW -- WE DO HAVE THE TEAM -- ALL DIFFERENT KIND OF ETHNIC -- DIFFERENT ETHNICITIES THAT RELATE -- >> SO YOU'RE SAYING HAVE A DIVERSE TEAM? >> YES. >> WE WANT SPANISH SPEAKING -- IT'S CALMING. IT MAKES BUSINESS SENSE, RIGHT? >> RIGHT. THE MOST IMPORTANT THING IS THE STAFF. I AGREE WITH LUCILE THAT THE STAFF MEMBERS DEFINITELY NEED TO BE -- WELL, WE RECRUIT FROM THE COMMUNITY OR THEY HAVE SOME TIE WITH THE COMMUNITY AND THAT WILL HELP A LOT WITH RECRUITMENT AND RETENTION. BUT THE SECOND QUESTION, YOU PROMISED TO RECRUIT THAT PERCENT OF MINORITY BUT -- I THINK LIKE MY EXPERIENCE WITH HOBI IS THEY FOLLOW PRETTY CLOSELY. YOU KNOW, EVERY YEAR WE HAVE TO REPORT ON -- >> I WOULDN'T DO TA BECAUSE I JUST SHOWED YOU DATA THAT 4 1/2% OF ALL STUDIES INCLUDED MINORITIES. SO THAT'S NOT A GOOD EXAMPLE. I WANT POSITIVE SUGGESTIONS ON WHAT WE CAN DO AND IF IT YOU COULD REPEAT YOUR CAREER, WHAT DID YOU DO WRITE AND WHAT DID YOU DO WRONG, AS FAR AS WITH RESPECT -- >> I THINK AS AN INVESTIGATOR, I WOULD DEFINITELY KEEP OUR PROMISE AND DO WHATEVER WE CAN TO ACHIEVE THE GOAL OF THE RECRUITING MINORITY. I THINK NIH AS A FUNDING AGENCY PROBABLY HAS TO ALSO WATCH CAREFULLY, EVALUATE ANNUALLY ABOUT WHETHER THE INVESTIGATOR REACHED THE GOAL. I THINK WE CAN WORK TOGETHER TO ACCOMPLISH THE GOAL. >> IT'S A LITTLE BIT OF A POLITICAL QUESTION BECAUSE IF I AS A REVIEWER, AND YOU'RE A RAO VIEWER, I CAN TELL THERE YOU ARE VERY FEW MINORITIES, IT'S USUALLY ONE OR TWO MINORITIES. SO WHEN YOU TALK ABOUT DEFUNDING PEOPLE, HE DON'T TALK ABOUT DEFUNDING PEOPLE BECAUSE THE PEOPLE THERE WHO L DEFEAT -- >> THAT HE VERY INSIGHTFUL. THESE PEOPLE HERE PROBABLY DON'T REALIZE THERE IS A REVIEWER BUY A AND THAT'S BEEN BROUGHT UP BY THE -- THAT'S BEEN -- IT'S ACTUALLY A CAMPAIGN BEING TAKEN ON HEAD ON BY THE NIH AND DR. NOKAMURA. ALONG THOSE LINES, YEAH, WHEN I PUT IN A MINORITY-ONLY STUDY, THE CRITIQUES I GET IS WHERE ARE THE WHITES? NOT ONLY FOR RO1s BUT PUBLICATIONS. WE HAVE THREE MINUTES BEFORE I OPEN IT UP TO YOU GUYS OUTSIDE, BUT SOME EMAILS AND TWEETS HAVE COME IN. SO I WANT TO TAKE ADVANTAGE OF THIS. WHAT DO YOU RECOMMEND TO SUSTAIN PARTICIPATION -- MINORITY PARTICIPATION IN LONGITUDINAL STUDIES? WHAT CAN YOU TELL THE AUDIENCE HERE? >> BASED ON MY EXPERIENCE, WE'VE BEEN AT 80% FOR OVER 20 YEARS AND WE'RE STILL GOING STRONG. I THINK IT'S THE CONTINUOUS ENGAGEMENT, CONTINUOUSLY GIVING BACK INFORMATION. EVERY YEAR WE'RE DOING SOMETHING WITH THE COMMUNITY -- WITH THE POPULATION. THEY ALWAYS ARE HEARING FROM US, AND EITHER THEY LIKE THE DESIGN, THEY LIKE THE STUDY, AND IT'S FEASIBLE FOR THEM TO DO AND THEY CONTINUE TO DO IT. >> NEXT? AT CARDIA MESA, WE POLL THE PEOPLE THAT ARE -- AFRICAN-AMERICAN, HISPANIC AMERICAN, CHINESE AMERICAN -- PARTICIPATION RATE STILL VERY HIGH, AND SO WE DEFINITELY SHOULD -- BUT I THINK THERE ARE SEVERAL ISSUES WE HAVE TO DO THAT. HOW DO YOU ACCOMPLISH -- IS IMPORTANT. WHAT WE DO IS WE HAVE -- PROBABLY YOU ARE DOING THE SAME THING, SEND THE BIRTHDAY CARD, THE HOLIDAY CARD, IN SOME CASES SYMPATHY CARD, AND ALSO NEWSLETTER. PERIODICAL NEWSLETTER TO TELL THEM THE FINDINGS. A AND SO MAKE THEM FEEL LIKE THEY CONTRIBUTE SOMETHING. YOU APPRECIATE THEM. THEN YOU HAVE THE PERIODICAL FOLLOW-UP EVERY SINKS '06 MONTHS OR ONE YEAR, YOU HAVE TO CONTACT THEM, UPDATE THEIR ADDRESS AND SO ON. AND YOU HAVE TO HAVE A VERY FRIENDLY GOOD AND PERSISTENT RETENTION OF STAFF. MY RETENTION OF STAFF LIKE ONE WORKED FOR ME FOR 25 YEARS AND SO ALL THE PARTICIPANTS KNOW HER BUT NOT ME. SO THAT'S VERY IMPORTANT. >> IN MY EXPERIENCE, I RECRUITED ACTUALLY IN -- ASIAN AND WHITE COMMUNITIES AND EACH RECRUITMENT STRATEGY DIFFERED. SO WHAT I WANT TO ASK THE PANEL IS, WHAT SORT OF INCENTIVES SHOULD WE HAVE, YOU THIS SHE BE EQUAL ACROSS THE DIFFERENT STUDY SE? >> I'M NOT SURE -- LIKE FINANCIAL INCENTIVES, BASED ON THE POPULATION? I'M SORE EE I DIDN'T UNDERSTAND THE QUESTION. >> WE WANT TO ENCOURAGE PARTICIPATION OF RESEARCH PARTICIPANTS FROM A VARIETY OF DIFFERENT COMMUNITIES, DIFFERENT SETTINGS, HIGH AND LOW, GEOGRAPHY, AND HOW DO WE IP SENT ADVISINCENTIVIZE THEM TO STAY IN THE STUDY >> I REALIZED, MY EXPERIENCE TO ENGAGE AFRICAN-AMERICANS AND HISPANICS WAS A DIFFERENT APPROACH THAN IT WAS TO ENGAGE CAUCASIANS AND ASIANS. DR. LIU? >> I THINK IF YOU TALK ABOUT -- WHAT WE GIVE THEM IS THE INCENTIVE THAT WE GIVE THEM -- THEY COME TO THE CLINIC, AND WE DEFINITELY PAY THEIR TRANSPORTATION. THAT'S VERY IMPORTANT. IN TERMS OF MONITORING INCENTIVES OR IRB REQUIRED -- YOU CANNOT SEPARATE SO THIS WILL GIVE MORE AND THIS WILL GIVE LESS. THAT'S DEFINITELY NOT ALLOWED. THE INCENTIVE WILL HELP, DEFINITELY WILL HELP. >> WE ALSO RELY ON OUR COMMUNITY PARTNERS AND STAKEHOLDER ENGAGE LTS, SO WE HAVE PEOPLE WHO ARE GOING TO BE IN THE STUDY AND SAY WHAT DO YOU THINK IT SHOULD BE, HOW MUCH SHOULD WE PAY, HOW SHOULD WE PAY, BECAUSE THEY WILL KNOW BETTER THAN US. >> OKAY. WE'RE GOING TO OPEN IT UP AT 12:10, BUT WE'RE EARLY SO I WILL GIVE THE FIRST ONE TO SHIRIKI. >> THANK YOU. THANK YOU FOR THOSE INSIGHTS, AND FOR CHALLENGING US TO MODERATOR TO REALLY TALK ABOUT SOLUTIONS. I WANT TO TALK ABOUT EDUCATING PEOPLE WHILE THEY WERE IN A STUDY. BECAUSE WE KNOW THAT THERE ARE SOCIAL FACTORS TA RELATE TO THE EXPRESSION OF DISEASE PREDISPOSITION, SO YOU PICTURE A COHORT WHOSE HEALTH IS GETTING WORSE WHILE YOU'RE WATCHING THEM, BECAUSE THEY'RE NOT GETTING INFORMATION THAT WILL HELP THEM FIX THE PART THAT MEDICINE CAN'T FIX. AND I JUST WOULD LIKE TO HEAR YOUR COMMENT ON THAT. >> WE DON'T HAVE THE FORMAL OBSERVATION BECAUSE WE DON'T WANT TO INFLUENCE TOO MUCH. HOWEVER, WE DO -- LIKE IF YOU'RE INTERESTED, I CAN SEND YOU MESA AND THE CARDIA -- HEALTHY EATING, THAT KIND OF THING, SO WE GIVE THEM THE INFORMATION. ALSO WE HAVE THE WEBSITE, THE PUBLIC WEBSITE FOR THEM TO PARTICIPANT WEBSITE FOR THEM TO SEE THESE THINGS, SO WE SEND LIKE EVERY SIX MONTHS A NEWSLETTER, MESA, ENCARDIA EVERY YEAR, SO THESE ARE THE -- BUT WE NEVER DONE THE FORMAL EDUCATION SESSION LIKE ALL TOGETHER TO TEACH THEM HOW TO -- BECAUSE THAT'S A LITTLE BIT -- IT'S AN INTERVENTION. >> I JUST WANT TO RAISE THE QUESTION, IS ANYTHING THAT WE USUALLY DO FOR OUR RULES, ARE THEY UP FOR GRABS? BECAUSE IT'S COME UP THE VERY FIRST SPEAKER SAID THAT. >> NO, THE POINT IS THE RULES NEED TO BE OVERHAULED. I DON'T KNOW IF YOU HEARD THAT. THE NIH REVIEW CRITERIA NEEDS TO BE OVERHAULED. AND WE HAVE SUGGESTIONS. >> MINE MIGHT NOT BE A REPRESENTATIVE EXPERIENCE BUT I HAVE A COMMUNITY BOARD AND THEY HAVE AN EQUAL VOTE TO I CAN'T DO STUFF IN THE STUDY UNLESS MY COMMITTEE AGREES TO IT, SO THE RULE IS DON'T ASK -- WE CAN'T ASK DEPRESSION QUESTIONS IF SOMEBODY SUGGESTS -- WE CAN'T DO DOMESTIC VIOLENCE. I COULDN'T DO A SLEEP APNEA QUESTION UNLESS I COULD GET PORTABLE SLEEP MONITORS FOR TESTING FOR PEOPLE. SO WE DID IT ALL. WE WORKED REALLY HARD TO GET INCREDIBLE EXHAUSTIVE RESOURCE LIST OF WHAT'S IN THE COMMUNITIES BECAUSE MY COMMUNITY PARTNERS HAVE SAID DON'T ASK QUESTIONS THAT SHOW PEOPLE THAT THEY'RE -- YEAH. SO I DON'T KNOW WHAT YOU CAN DO WITH A MILLION FOLKS AROUND THE COUNTRY, BUT THAT'S WHAT WE DO IN HARLEM. >> OKAY. WE'RE AT 12:10 AND I'D LIKE TO OPEN IT UP FOR THE NEXT 20 MINUTES. >> THANK YOU, PANELISTS. I'M WITH THE NATIONAL ASSOCIATION FOR TRUSTED EXCHANGE. I THINK I HEARD ONE OF THE PANELISTS INDICATE PART OF THE RETENTION STRATEGY. BY DOING THAT THROUGH THE EMR, I THINK THAT'S A VERY POOR DISTRIBUTION CHANNEL AND WE SHOULD BE LOOKING AT HOW DO WE DO DISTRIBUTION THROUGH INITIATIVES LIKE THE BLUE BUTTON INITIATIVES. >> IT WAS REALLY DESIGNED FOR BILK ANBILLING AND NOT FOR MANAGEMENT OF PATIENTS THAT WILL NEED TO BE OVERHAULED OVERHAULED. >> IN THE STUDY, WE SEND THE RESULT LETTER TO THE PARTICIPANT DIRECTLY. >> TREES LANDRY. >> DR. HANSON, GO AHEAD. >> I'LL GO AND THEN YOU GUYS CAN GO. SO I HAVE A QUESTION ABOUT RETURNING INFORMATION TO RESEARCH PARTICIPANTS AND CAROL, YOU TALKED ABOUT INFORMATION GOING BACK AND GOING BACK TO THE PHYSICIAN AND THAT SORT OF CLINICALLY VALIDATED WELL ESTABLISHED INFORMATION. WHAT IS YOUR SUGGESTION ABOUT WHAT WE DO IN THE COHORT? THERE'S GOING TO BE SOME INFORMATION THAT'S GOING TO BE DISCERNED THAT I THINK EVERYONE WOULD AGREE WOULD BE READILY SHARED, WHAT'S GOING ON WITH THE COHORT, WHAT KIND RESEARCH, AND THEN INDIVIDUAL INFORMATION THAT WE COULD PROBABLY ENUMERATE THAT'S WELL VALIDATED IMPORTANT INFORMATION. BUT WHAT ABOUT EVERYTHING ELSE? DO WE -- YOU TALKED ABOUT POTENTIALLY CONFUSING PEOPLE, BUT THERE'S SOME PEOPLE WHO ARE NOT GOING TO BE CONFUSED AND WOULD LIKE ACCESS TO EVERYTHING THAT'S KNOWN ABOUT ME, I WANT TO KNOW IT. THERE'S NOT THAT MUCH INFORMATION THAT I'M AWARE OF, AND MAYBE YOU ARE, OF PEOPLE WHO WERE ACTIVELY SPEAKING INFORMATION INCLUDING RESEARCH RESULTS THAN HAVING BAD THINGS HAPPEN TO THEM. WE'VE WORRIED ABOUT GIVING PEOPLE INFORMATION THAT THEY'RE NOT GOING TO BE ABLE TO UNDEAND AND USE EFFECTIVELY, SO MAYBE WE DON'T WANT TO FORCE IT ON PEOPLE, BUT WHAT ABOUT THE OPPORTUNITY TO ACCESS IT IF THEY'RE ACTIVELY INTERESTED. >> SO IN MY EXPERIENCE OF 11,000 PATIENTS, EVERYBODY'S WANTED THE DATA BACK. DATA IS ONLY USEFUL IN AGGREGATE FORM AND IT'S ONLY USEFUL IF WE HAVE CLIA-APPROVED LABS THAT ARE DOING THE TESTING. THAT MIGHT HAVE CHANGED. BUT WE DON'T GIVE BACK -- AT LEAST MY STUDIES, WE DON'T GIVE BACK INFORMATION. >> SO WE STUDY GENETICS AND MANY OF THE GENETIC RISK FACTORS ONLY IN AGGREGATE FORM, SO WITH THOUSANDS OF INDIVIDUALS, AND BY THE TIME WE SAMPLE AN INDIVIDUAL PATIENT LIKE ME, MY DATA IS ONLY GOOD IF THERE'S AN ADDITIONAL 9,000 INDIVIDUALS. THAT'S SEVERAL YEARS BEFORE I KNOW THAT INFORMATION. WHEN WE GET INFORMATION AND WE PUBLISH IT, WHAT I ROUTINELY DO IS WE DISSEMINATE THE MANUSCRIPTS TO ALL THE PARTICIPANTS, ALL THE COMMUNITY PARTICIPANTS, AND USUALLY I WILL GO TO THE COMMUNITY CLINICS AND ACTUALLY GIVE A PRESENTATION. POINT OF FACT, WHEN DR. COLLINS WAS ROLLING OUT THE THOUSAND GENOMES PROJECT, I ACTUALLY SPOKE AT MANY COMMUNITY CLINICS OR HISPANICS -- IN THE BAY AREA TO INFORM -- WHO YOU MET EARLIER OR YOU HEARD ABOUT EARLIER, AND THEY ROLLED IT OUT TO THE COMMUNITY. >> THAT'S AN INTERESTING STATEMENT. I THINK THE QUESTION THAT YOU RAISED, I THINK IT'S REALLY IMPORTANT TO HAVE THE INPUT AND BUY-IN OF THE COMMUNITY, THE DIFFERENT COMMUNITIES. THEY WON'T ALL -- WE DID AN ENVIRONMENTAL STUDY, AND WE HAVE INDOOR AND OUTDOOR MONITORING. WE GAVE BACK THE AGGREGATE. PEOPLE WANT TO KNOW THE INDIVIDUAL, SO WE CAN TELL THEM THEY HAD THIS HIGH -- EXPOSURES, THEN WE HAVE TO SEND OVER ENVIRONMENTALISTS TO SHOW YOU'RE STORING GASOLINE IN YOUR HOUSE, IN YOUR LIVING AREA, YOU'RE DOING ALL THESE THINGS THAT YOU SHOULDN'T BE DOING. SO AS LONG AS YOU HAVE A PLAN FOR FOLLOWING BEYOND JUST GIVING THE RESULTS, I THINK IT'S OKAY BUT I THINK AS LONG AS IT'S CONGRUENT WITH WHAT COMMUNITY SAYS, BUT ALSO IF YOU DON'T HAVE A PLAN, YOU SEND PEOPLE SOME INFORMATION, THE ENVIRONMENTAL DATA AS AN EXAMPLE, IT'S LIKE, UH-OH, WE STARTED DOING EDUCATIONAL PROGRAM AROUND THAT TOPIC WHICH WAS NOT OF INTEREST TO ME AT THE TIME BUT BECAME OF INTEREST BECAUSE OF ONE OF OUR RESULTS. THEN THEY LEARNED YOUR BIGGEST PROBLEM WAS NOT YOUR HOUSE, PER SE, BUT WHAT YOU WERE DOING WITHIN THE HOUSE. SO WE CAN ACTUALLY MODIFY A CHANGE BASED ON THAT. >> THIS IS A LITTLE DISCLAIMER, EACH OF US IS GIVING OUR PERSONAL EXPERIENCES OF OUR OWN RECRUITMENT, AND IT'S NOT THE AGENDA SET BY THE PMI. BUT OUR EXPERIENCES AND YOUR EXPERIENCES WILL BE COLLATED AND WILL FORM THE AGENDA. SO THE NEXT QUESTION IN THE BACK THERE? >> HI, LATRICE LANDRY, HARVARD HARVARD MEDICAL SCHOOL, ON ROTATION HERE AT THE NATIONAL LIBRARY OF MEDICINE. MY QUESTION IS REGARDING PHYSICIAN ENGAGEMENT. IN 2014, RESEARCH FOR AMERICA PUBLISHED A REPORT HIGHLIGHTING PHYSICIAN REFERRALS AS A KEY DETERMINANT FOR MINORITY PARTICIPATION IN CLINICAL TRIALS. WE'VE ALSO HAD THREE OF PANELISTS ACKNOWLEDGE THE IMPORTANCE OF PHYSICIAN ENGAGEMENT AND NOT ONLY THE RECRUITMENT OF MINORITY PARTICIPANTS BUT ALSO THE TRANSLATION AND DISSEMINATION OF THOSE RESULTS. SO I WAS WONDERING IF THE PANEL COULD ADDRESS EFFECTIVE STRATEGIES FOR INCLUSION OF PHYSICIANS OR ENGAGEMENT OF PHYSICIANS IN THE PMI COHORT. >> CAN I JUST MODIFY IT NOT ONLY ON CLINICIANS BUT HEALTHCARE PROVIDERS. ONE THING THAT WE HAVE DONE TO GET AROUND THAT, WE TALK ABOUT -- THEY OFTEN DON'T HAVE THEIR OWN PHYSICIAN ANYHOW. SO I HAVE ON MY STAFF A NURSE PRACTITIONER, ACTUALLY TWO, SO -- BECAUSE NURSE PRACTITIONERS CAN INDEPENDENTLY -- THEY DON'T HAVE TO BE SUPERVISED. AND THEY CAN EVALUATE, EXAMINE AND ACTUALLY REFER THEM IN TO OUR STUDIES IF THEY MEET CERTAIN CRITERIA. SO WE USE NURSE PRACTITIONERS BUT ALSO THEY HELP PHYSICIANS IN GENERAL. WE HAVE A GOOD LINKAGE WITH OUR COMMUNITY-BASED PHYSICIANS AS WELL SO THOSE PEOPLE WHO DO HAVE PHYSICIANS, WE CAN GET REFERRALS FROM THEM. WE ALSO INCLUDE IRB LETTERS FROM A PHYSICIAN OR NURSE PRACTITIONER THAT HAS TO BE SIGNED, ESPECIALLY IF WE DO A LOT OF EXERCISE INTERVENTIONS AT ALL, AND WE HAVE TO MAKE CERTAIN THAT THEY'RE NOT GETTING READY TO HAVE A HEART ATTACK TODAY. WE DO A LOT OF THINGS UP FRONT YOU NURSE PRACTITIONERS CAN ALSO HELP. >> 30 SECONDS. GO AHEAD. >> 30 SECONDS? >> MM-HMM. >> OKAY. >> WE'VE GOT 14 MINUTES TOTAL SO I'M NOT BEING RUDE I JUST WANT TO BE ON TIME. >> OKAY. I'D LIKE TO SAY THAT IN SOME PLACES IN REFERENCE TO WHETHER OR NOT THE P.I. SHOULD LOOK LIKE THE COMMUNITY, IN SOME PLACES IT MAY NOT MATTER BUT IN JACKSON, MISSISSIPPI, IT DOES MATTER. >> THIS IMPORTANT, WE SHOULD DISCUSS THIS BECAUSE THIS IS AN IMPORTANT TOPIC. >> JAC JACKSON, MISSISSIPPI IS 75, PROBABLY 80% AFRICAN-AMERICAN. THE COUNTY IN WHICH JACKSON RESIDES, WHICH IS THE CAPITAL COUNTY, HEINZ COUNTY, IT IS OVER 75% AFRICAN-AMERICAN. AND WE HAV HAD AN AFRICAN-AMERICAN P.I. FOR 13 YEARS, SO NOW THERE'S A SEARCH ON FOR A NEW P.I. THE COMMUNITY HAS COME OUT VERY STRONGLY AND SAID THEY WANT AN AFRICAN-AMERICAN P.I. THE STAFF THAT WAS RESPONSIBLE FOR THE GROUNDWORK, THE COMMUNITY ENGAGEMENT, THE COMMUNITY OUTREACH, WAS FROM JACKSON STATE. AND NOW WE ARE A COMMUNITY OUT DIDREACH CENTER. OUTREACH CENTER, INITIALLY WE WEREN'T. SO THE IDEA OF THIS IS WHAT WE WANT BECAUSE THIS IS REFLECTIVE OF OUR NEED, SO I THINK THE FUNDING AGENCIES FEED TO SERIOUSLY CONSIDER -- WE CAN PAY LIP SERVICE FOR YEARS. >> 2% OF ALL NIH FUNDED RESEARCHERS ARE AFRICAN-AMERICANS. >> ABSOLUTELY. I KNOW THAT. >> GIVEN THAT FACT, GIVEN WHAT YOU JUST SAID -- >> YOU HAVE TO LOOK A LITTLE HARDER. >> WHAT EIGHTS SOLUTION, THOUGH? >> THE SOLUTION IS AN AFRICAN-AMERICAN P.I. [LAUGHTER] THAT'S THE SOLUTION. [APPLAUSE] YOU KNOW, THE STAFF IS VERY DIVERSE. IT'S A THREE PARTNERSHIP PROGRAM. THE UNIVERSITY MEDICAL CENTER, JACKSON STATE UNIVERSITY AND -- COLLEGE. WE ALL HAVE OUR ROLES. WE'RE ONE STUDY. BUT WE ALSO HAVE THE RESPONSIBILITY, JACKSON STATE HAS THE RESPONSIBILITY FOR MAINTAINING THE COHORT. OF WE HAVE AN ALMOST 80% RETENTION RATE. WE'VE BEEN IN BUSINESS FOR FEP 15 YEARS. SO IT SAYS A LOT WHO'S ON THE GROUND AND ALSO WHO'S AT THE TOP. THANK YOU. >> IT'S THE ELEPHANT IN THE ROOM THAT NO ONE WANTS TO TALK ABOUT. NO, I NOT ABOUT YOU TALKING ABOUT IT. NO, I'VE HEARD YOU. I'VE HEARD YOU TALK ABOUT IT AND I AGREE WITH YOU BUT EVERYONE ELSE HAS TO TALK ABOUT IT, BECAUSE 'ER ONE ELSE IS AT THE STUDY SESSION DECIDING WHO GETS FUNDED AND WHO DOESN'T. SO GIVEN THE NUMBERS I JUST TOLD YOU, I NEED CONCRETE SOLUTIONS. I DON'T THINK WE'RE GOING TO GET THEM TODAY, BUT IT IS SOMETHING THAT WE'VE ALL BEEN WORKING ON FOR A LITTLE WHILE, THE PIPELINE, AND IT'S GOING TO BE IMPRACTICAL PROBABLY TO HAVE TEAMS OF STUDIES REFLECT THE COMMUNITIES THAT ARE BEING STUDIED, SO WE HAVE TO BE CREATIVE. >> IN 2015, IT SHOULD NOT BE DIFFICULT TO GET AN AFRICAN-AMERICAN P.I. THIS IS 2015, WE LOOK A LITTLE HARDER, WE BECOME A LITTLE MORE MORE -- WHETHER WE OFFER MORE OPPORTUNITY, WE MAKE IT MORE PALATABLE. THERE ARE A NUMBER OF THINGS, A NUMBER OF WAYS THAT IT CAN BE DONE, BUT IT MUST BE DONE. >> I KEEP TRYING TO SEND NAMES OF PEOPLE TO RECOMMEND FOR THAT POSITION. >> WE SHOULD PROBABLY GO ON TO THE NEXT QUESTION. AND I THINK SHE'S BEEN PATIENTLY WAITING FOR 10 MINUTES OR MORE. >> THESE ARE GREAT QUESTIONS. BETH FROM NICHOLAS CONNOR INSTITUTE BUT I'M ALSO HERE REPRESENTING THE SAN DIEGO BLOOD BANK. AS AN EXAMPLE OF AN EXISTING INFRASTRUCTURE THAT IS TRUSTED IN THE COMMUNITY, HUNDREDS OF THOUSANDS OF PEOPLE ACROSS THE U.S. OF DIVERSITY IN TERMS OF ECONOMIC STATUS WITH THEIR BLOODMOBILES IN TERMS OF SEX, BLOOD, AGE -- EXCEPT FOR THE YOUNGER ONES BUT THAT IS AN INFRASTRUCTURE THAT'S PREECK SITTING THAT COLLECTS BIOSPECIMENS THAT HIGHLY REGULATED BY THE FDA IN SOME CASES MAYBE THE EU AND -- SO THIS IS AN INFRASTRUCTURE HA COULD BE UTILIZED SORE SOME STUDY TO PARTNER WITH RESEARCHERS. INTO >> THAT'S ACTUALLY A VERY GOOD POINT THAT WAS RAISED ABOUT BLOOD BANKS AND BIOBANKS. >> NANCY ROACH, COLORECTAL CANCER. THIS IS A SUGGESTION. MOST UNIVERSITIES, I DO A LOT OF DIFFERENT THINGS WITH UNIVERSITIES AND CANCER CENTER ITS, AND EVERY SINGLE CANCER CENTER AND UNIVERSITY HAS A DEVELOPMENT OFFICE. SOME OF THEM HAVE COMMUNITY ENGAGEMENT OFFICES. THE COMMUNITY ENGAGEMENT PEOPLE ACTUALLY DO A GREAT JOB SOMETIMES OF REALLY ENGAGING WITH THE COMMUNITY AND THERE ARE LOTS OF DITCH MODELS OUT THERE. I THINK DID IF YOU GO THROUGH SOME OF THE COMMUNITY ENGAGEMENT PLACES, THAT MAY BE ONE WAY TO GET INTO THE COMMUNITY AND ALSO REALLY REQUIRING IN STUDY SECTIONS THAT THE RUBBER HIT THE ROAD. AS AN ADVOCATE AND A WOMAN, I'VE SAID IN STUDY SECTIONS WHERE I'VE RAISED ISSUES AND BASICALLY BEEN TOLD THAT I WAS WRONG, AT WHICH POINT I SAY, WELL, NO, ACTUALLY, I DON'T THINK I AM. BUT IT'S HARD TO GET THAT VOICE OUT >> I AGREE ABOUT THE COMMUNITY ENGAGEMENT GROUPS AND ALL THE DIVERSITY STUFF. AT THE BIG UNIVERSITY LIKE MINE, THAT'S THE FIRST THING TO GET CAN CUT. SO SORRY. NEXT QUESTION? OH, WAIT, SPIRO HAD A QUESTION. YOU'RE PATIENTLY WAITING. >> SIP RO. MANSON. UNIVERSITY OF COLORADO. TWO OBSERVATIONS. FIRST IS I DO THINK THAT WE ARE BEGINNING TO MAKE SOME IMPORTANT STRIDES AFTER THE REPORT IN TERMS OF THE REPRESENTATION, RACIAL ETHNIC MINORITIES -- >> WHICH REPORT? >> THE GINTHER REPORT IN 2011 AND THE FACT UNDER DR. COLLINS' DIRECTION WITH THE RECENT NATIONAL RESEARCH MENTORING NETWORK AND THE NIH OF $20 MILLION OVER THE NEXT FIVE YEARS I THINK RECOGNIZES THE PROBLEM AND I THINK PROVIDES AT LEAST SOME POSSIBLE SOLUTION IN THE SHORT TERM. IT'S NOT WITHOUT MANY OTHER CHALLENGES. BUT YOU KNOW, DR. BREW CHARLOTTE, YOU BROUGHT UP THE TERM INCENTIVIZE, I SUBMIT TO YOU, WE'VE ALREADY LOST. BECAUSE INTRINSIC VALUE OF THE ENTERPRISE THAT WE'RE SEEKING TO INVOLVE PEOPLE IN. I THINK THAT THERE ARE OTHER SOURCES AND FORMS OF VALUE THAT THEY RELATE TO THAT SENSE OF CONTROL, EFFICACY, AND PERSONAL INVESTMENT AND RETURN RATHER THAN A PAIR OF NIKE SHOES FOR INDIAN DIABETICS TO GET THEM TO PARTICIPATE, RATHER THAN $20 TO ENCOURAGE THEM. I THINK THE NOTION OF IRBs, FOR EXAMPLE, ARE REMINDING US THAT COMPENSATION IS THE TERM, AND WHAT IS COMPENSATION, WHAT'S THE DIFFERENCE BETWEEN COMPENSATION AND INCENTIVE? COMPENSATION IS THE RECOGNITION AND THE PAYMENT FOR THE VALUE CONTRIBUTION THAT PEOPLE MAKE, NOT TO ENTICE THEM IN TO A SCIENTIFIC STUDY. SO I THINK IT'S REALLY IMPORTANT THAT WE UNDERSTAND THOSE KINDS OF DISTINCTIONS AND THAT -- AND IT PLACES THE BURDEN BACK ON US IN TERMS OF ENSURING THAT WHAT WE DO IS OF INTRINSIC VALUE TO THE PEOPLE WE HOPE WILL PARTICIPATE. >> MEGAN OW O'BOYLE. I WANT ACTUALLY THE ROOM TO ADDRESS THE RETURNING THE DATA, BUT SINCE WE'RE TALKING WITH ABOUT PATIENT ENGAGEMENT AND HEALTH IK EAST COAST WIT I EQUITY, I WANTE D TO BRING UP AN ISSUE THAT OUR DISEASE GROUP HAS, WHICH IS OUT OF 1300 PEOPLE IN THE WORLD, THEY'RE PRETTY MUCH WHITE AND HIGH SOCIOECONOMIC BECAUSE IT REQUIRES GENETIC TESTING TO GET THE DIAGNOSIS, AND YOU HAVE TO HAVE GOOD INSURANCE OR BE PART OF RESEARCH FOR GENETIC TESTING. SO MY QUESTION IS, WILL THERE BE ACROSS THE BOARD SEQUENCING OR GENETIC TESTING FORT MILLION PERSON COHORT COHORT? >> WE EXPECT SO, YES. >> EXCELLENT. BUT THAT INFORMATION WILL NOT BE RETURNED OR THAT IS UP IN THE AIR TO DISCUSS? >> WELL, THE PURPOSE OF THESE MEETINGS IS TO GATHER IFORMATION AND WE'LL MAKE A DECISION COLLECTIVELY DOWN THE ROAD, BUT YOUR POINT IS WELL TAKEN. >> OKAY. >> NEXT QUESTION? >> HI. CHENEQUA CALLIER. TO WHAT EXTENT IF AT ALL SHOULD WE DEFINE MINORITY GROUPS ON THE TABLE WHEN THINKING ABOUT RECRUITMENT AND CONTINUED ENGAGEMENT SO WE REFERENCE MINORITY GROUPS, FOR EXAMPLE, AND ASIANS, WHEN WE'RE LOOKING AT A STUDY THAT ONLY INCLUDES PEOPLE FROM MAYBE KOREA OR CHINESE POPULATIONS AND WE DEFINE THOSE GROUPS AS ASIAN, WON'T THAT AFFECT NOT ONLY OUR UNDERSTANDING OF RISK IN THOSE GROUPS BUT ALSO OUR ABILITY TO MEANINGFULLY ENGAGE WITH PEOPLE FROM PARTICULARLY -- FROM PARTICULAR SUBGROUPS. >> YEAH, AND THAT'S A WONDERFUL OPPORTUNITY FOR ME TO TALK ABOUT THE MOST RECENT LAWSUIT BY THE ATTORNEY GENERAL OF HAWAII FOR MARKETING PLAVIX, BLOOD THINNER AND HEART MEDICATION, TO ASIANS, KNOWING FULL WELL IT DOESN'T WORK IN 55% OF ASIANS. SO IF YOU'RE ASIAN ON HAWAII HAVING A HEART ATTACK AND THE WITH YOU ENT TO THE ER, THE LIKELIHOOD THAT YOU GOT A PLACEBO IS HIGH, SO THEY JUST PULLED PLAVIX FROM THE MARKET IN HAWAII. THAT'S AN EXAMPLE OF WHY WE NEED TO INCLUDE DIVERSE POPULATIONS. BECAUSE IF WE DON'T, WE'RE MISSING OUT ON SCIENTIFIC OPPORTUNITIES. >> SO WITH REGARD TO WHAT DR. MANSON SO VERY EFFECTIVELY SAID ABOUT INNOCEN INCENTIVIZATION, THERE ARE INTRINSIC -- TO -- I DIDN'T HAVE TO SPEND A DOLLAR IN THE STUDY I CONDUCTED ON ASTHMA AND SLEEP APNEA TO INCENTIVIZE PEOPLE TO JOIN THE STUDY. ONCE I FOUND THEM, THEY STARTED SHARING WHAT THEY LEARNED ABOUT THEIR KIDS WITH OTHERS AND THEY STARTED LINING UP FOR THE NEXT PART OF THE STUDY. UL MATTLY WE DIDN'T GET THAT FUNDED BUT THE REALITY IS WE DID MANAGE TO TRAIN A NUMBER OF PEOPLE IN THE COMMUNITY ABOUT HOW TO GET THEIR HOUSES FREE OF DUST THAT WAS BRINGING THE DUST MITES THAT THE KIDS WERE ALLERGIC TO THAT WAS CAUSING THEIR ASTHMA. WE WORKED WITH THE COMMUNITY LEADERS TO HELP THEM TO IDENTIFY WAYS THAT THEY COULD PARTICIPATE IN THEIR OWN COMMUNITIES TO MAKE THEM HEALTHIER COMMUNITIES AND FOR THAT REASON, THAT WAS THE ONLY INCENTIVE NECESSARY. WE NEED TO RECONSIDER FINANCIAL INCENTIVES AND IDENTIFY WAYS TO DO SOMETHING OTHER THAN FINANCE. >> SO WE HAVE MINUTES AND THERE ARE TWO QUESTIONS. >> CAN WE LET THE PANELISTS RESPOND REAL QUICKLY TO SOME OF THESE THINGS THAT THEY'VE HEARD? >> SURE. >> I FULLY AGREE WITH YOU. IF YOUR GOAL IS TO TRY TO RECRUIT -- THEY HAVE SOME HEALTH PROBLEMS AND THEY PROBABLY ARE LIKELY TO VOLUNTEER WITHOUT ANY INCENTIVES, IN CARDIAC MESA, WE FOLLOW THEM -- THE ETIOLOGY OF THE DISEASE. IT'S PROBABLY VERY DIFFICULT, YOU THINK THE -- WITHOUT ANY INCENTIVE, YOU GET VERY HIGH PARTICIPATION. I JUST THINK IT'S SOMETHING THAT YOU NEED TO THINK ABOUT AND RECONSIDER. BUT THE MAIN ISSUE IS IRB DOES NOT ALLOW US TO SEPARATE THIS, WE KEEP THIS, WE GIVE THAT. WE CANNOT DO THAT. >> I ALSO THINK I'VE HAD PROJECTS WHERE PEOPLE LINE UP AND ARE VERY HAPPY TO BE PART OF IT AND THE COMMUNITY INTRODUCES IT. I THINK FOR EXAMPLE OUR BIOBANK WHERE YOU'RE GIVING A TUBE OF BLOOD AND YOU'RE NOT GOING TO GET ANY RESULTS BACK, PEOPLE MIGHT FEEL DIFFERENTLY ABOUT THAT, SO IF IT'S A -- YOU'VE GOT A STUDY WITH CLEAR BENEFITS TO A POPULATION. SOME STUDIES DON'T HAVE CLEAR BENEFITS AND THEY PROBABLY STILL NEED TO BE DONE. I ALSO BELIEVE THAT WHEN IT COMES TO COMPENSATION, I GET COMPENSATED FOR MY WORK AND IF YOU'RE A PARTICIPANT AND YOU'RE GOING TO SPEND HOURS AND HOURS OVER A LONG PERIOD, IT IS MY ABSOLUTE PLEASURE FOR YOU TO BE COMPENSATED AS WELL. [APPLAUSE] >> YES, I JUST WANTED TO DIRECTLY ANSWER THE CAN -- CONTRIBUTE TO ANSWERING DR. HUDSON'S SPECIFIC QUESTION ABOUT GIVING THE RESULTS BACK AND -- COLUMBIA UNIVERSITY. OUR ADVISOR, WE DO DIRECTLY GIVE BACK RESULTS TAILORED TO THE PARTICIPANT. WE DESIGNED THE RESULTS, THE STRATEGY FOR GIVING THE RESULTS BACK AS INNOVATIVE GRAPHICS DESIGN FOR INDIVIDUALS WITH LOW HEALTH LITERACY, WE DESIGNED IT WITH THE COMMUNITY, WE TESTED IT WITH THE COMMUNITY, AND THEN WE BUILT ELECTRONIC -- TO AUTOMATE THAT SO WE COULD RETURN THE DATA TO 6,000 PEOPLE. >> COULD YOU ELABORATE ON WHAT STUDY THAT WAS? >> THIS IS OUR FUNDED WASHINGTON HS INFORMATICS INFRASTRUCTURE FOR COMPARATIVE EFFECTIVENESS RESEARCH STUDY. >> AND THE DISEASE OUT COME THAT YOU'RE WORKING ON? >> HYPERTENSION. >> HYPERTENSION. >> YES. >> HYPERTENSION IN WHITES? I'M SORRY, I MISSED THAT. >> NO, IT'S LATINO IMMIGRANTS, PRIMARILY DOMINICAN. >> CAN I SAY ONE WORD ABOUT THE QUESTION. WE GAVE THE RESULTS BACK. THAT DOESN'T CAUSE ANY CONFUSION. WE TOLD THEM THAT IT'S A RESEARCH STUDY AND OUR FINDING, YOU NEED TO CONSULT WITH YOUR PHYSICIAN FOR THESE RESULTS AND WHAT NEEDS TO BE DONE. BUT I THINK ACTIONABLE GENETIC ABNORMALITY IS DIFFERENT. IT SEEMS -- BECAUSE THAT'S -- RELATE TO THEIR FAMILY. IT'S NOT JUST THE INDIVIDUAL PERSON. WE NEED TO THINK A LITTLE BIT MORE ABOUT HOW WE SHOULD DO THAT, MAYBE ON THE CONSENT FORM, WE SHOULD SAY WE'RE NOT GOING TO GIVE YOU THE RESULTS, OR WE SHOULD SAY WE'LL GIVE YOU THE RESULT, WE ARE NOT GOING TO PROVIDE GENETIC COUNSELING OR -- IT'S YOUR RESPONSIBILITY. WE HAVE TO IT MAKE IT VERY CLEAR TO THEM, AND THEN IF THEY PARTICIPATE, THERE IS NO PROBLEM. OTHERWISE PEOPLE RECEIVE THAT AND THEN WHAT AM I SUPPOSED TO DO? IT'S REALLY RAISE A LOT OF ANXIETY. >> WE ARE CLOSE BUT YOU'VE BEEN STANDING THERE FOR 30 MINUTES. OKAY, GREAT. OH, YOU WORK HERE. OKAY. WE ALL WORK HERE. SO I HAVE TWO THINGS TO ANNOUNCE. ONE IS WE HAVE A FACE TO FACE INTERVIEW, NIH INTERVIEW, THEY'RE KIND OF LIKE THE STORYTELLERS WITH NPR. WONDERFUL OPPORTUNITY TO TALK ABOUT YOUR VIEW OF PRECISION PED SIN. ALSO THERE'S A FACE TO FACE LUNCH AND WE ENCOURAGE ACTIVE PARTICIPATION AND DIALOGUE AMONGST PEOPLE WHO DON'T NORMALLY TALK TO EACH OTHER, SO THANK YOU FOR PARTICIPATING, AND WE ENDED UP PRETTY CLOSE ON TIME. THIS IS SESSION 5. IT'S FOCUSING ON ESTABLISHING COLLABORATIVE AND INCLUSIVE GOVERNANCE IN A LARGE STUDY SUCH AS BEFORE US. I'M SPERO MANSON FROM THE UNIVERSITY OF COLORADO AND MEMBER OF THE WORKING GROUP. WE HAVE THIS AFTERNOON THREE PRESENTATIONS BETWEEN 12 AND 15 MINUTES EACH. WHICH WILL MOVE FROM A BROAD FRAMEWORK WITH RESPECT TO EXAMPLES OF GOVERNANCE AND PRINCIPLES UNDERPINNING THAT. TO A MORE SPECIFIC EXAMPLE OF ALSO PRINCIPLE GOVERNANCE. AND ENDS WITH A VERY SPECIFIC PROGRAM OF WORK THAT ILLUSTRATES THE LESSONS LEARNED FROM IMPLEMENTING THOSE PRINCIPLES IN THE REAL WORLD. OUR PRESENTERS IN ORDER THIS MORNING ARE SUE SHERIDAN. SHE IS WITH THE DIRECTOR -- DIRECTOR THE OF PATIENT ENGAGEMENT AT THE PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE, PCORI. SHE'LL BE FOLLOWED BY MR. AL RICHMOND WHO IS EXECUTIVE DIRECTOR OF THE COMMUNITY CAMPUS PARTNERSHIPS FOR HEALTH AND IN THE CLEAN UP POSITION WE HAVE DR. CONSUELO WILKINS, EXECUTIVE DIRECTOR OF VANDERBILT ALLIANCE AND ASSOCIATE PROFESSOR OF MEDICINE VANDERBILT SCHOOL OF MEDICINE AND MAHARRY MEDICAL COLLEGE. TO THIS POINT WE HAVE DISCUSSED OUTREACH, ENGAGEMENT, RECRUITMENT, RETENTION, CRITICAL QUESTIONS, CAST WITHIN A DISPARITIES FRAMEWORK AND ULTIMATELY DISSEMINATION. MY SENSE IS THAT ALTHOUGH THOSE HAVE BEEN CHALLENGING TOPICS BOTH IN TERMS OF THEORY AS WELL AS PRACTICE, THERE IS A LOT OF EXPERNS IN TERMS OF PLEA AGREEMENT TAKES WITH GOOD MODELS THAT HOLD PROMISE FOR DOING THOSE ASPECTS OF THIS WORK WELL. THIS PARTICULAR TOPIC ON GOVERNANCE I SUBMIT HAS MUCH LESS BACKGROUND WITH RESPECT TO SUCCESSFUL MODELS ALTHOUGH WHAT WE ARE PRIVY TO TODAY WILL ILLUSTRATE I THINK SOME WONDERFUL ILLUSTRATIONS OF WHAT'S POSSIBLE. I ALSO SUBMIT TO YOU WHEN WE GET TO MATTERS OF GOVERNANCE THE CONVERSATION GETS VERY, VERY TOUGH. THERE ARE LOTS OF TENSIONS THAT BEGIN TO EMERGE, SURROUNDING ISSUES OF CONTROL, DIRECTION, NOT JUST MATTERS OF INCLUSION AND TO THE EXTENT INCLUSION IS PART OF THE SUBJECT, THERE ARE THERE ARE REAL ISSUE WHAT CONSTITUTES AND HOW INCLUSION IS DEFINED AND EXECUTED IN THE COURSE OF WORK. THINK WE'LL SEE WONDERFUL EXAMPLES IN THREE DIFFERENT WAYS THAT CHALLENGE HAS BEEN UNDERTAKEN AND HOLDS PROMISE FOR INFORMING HOW PMI MAY MOVE FORWARD. WE'LL BEGIN WITH MS. SHERIDAN, MR. RICHMOND AND DR. WILKINS. I WANT TO THE MAKE A PREPARATORY NOTE THAT THE MEMBERS OF THE WORKING GROUP HAVE HAD THE OPPORTUNITY FOR THE FIRST TIME REALLY TO PARTICIPATE AS QUESTIONERS AND DISCUSSANTS SO I WILL PAY PARTICULAR ATTENTION TRYING TO REMAIN BALANCED IN TERMS OF ENSURING THE GENERAL AUDIENCE HAS AN OPPORTUNITY TO ASK QUESTIONS AS WELL AS ATTENDING TO MEMBERS OF THE WORK GROUP SO THAT ALL VOICES ARE HEARD WITHIN THE CONSTRAINTS OF TODAY'S DISCUSSION. THANK YOU. SUE. >> THANK YOU, SPERO. GOOD AFTERNOON. I'M GOING TAKE ADVANTAGE OF HAVING THE MICROPHONE IN FRONT OF ME AND I'M GOING TO WEAR TWO HATS. ONE OF MY HATS IS THAT OF A PATIENT ADVOCATE AND A MOM. SO I WANT TO BUILD ON WHAT SUSAN SAID ABOUT WOMEN. I'M GOING TO SHOUT OUT TO THE MOM IN THE ROOM. MEGHAN AND SHARON AND OTHERS IN THE ROOM THAT IN TERMS OF PMI WE CAN THINK OF JOHN COHORT OF MOTHERS. THEY'RE POWERFUL, CHANGE AGENTS AND I KNOW THAT CDC AND HRSA AND MARCH OF DIMES THAT HAVE AN ARMY OF MOMS THAT ARE POWERFUL IN THIS INITIATIVE. SO I ALSO HAD THE OPPORTUNITY AS PATIENT PARTNER IN RESEARCH TO SEE A LITTLE BIT OF DATA CAN SPARK CHANGE BY CONNECTING WITH OTHERS AND MAKING THAT DATA GROW AND LOOKING AT OTHER DATA SETS, THAT DOD IN A BIG HEALTHCARE SYSTEM. SO WE THINK ABOUT PMI AND PEOPLE DONATING DATA, WE HAVE TO SHARE WITH THEM THAT A LITTLE BIT OF DATA CAN SPARK TREMENDOUS CHANGE. AND CHANGE OUTCOMES. I'M A BELIEVER IN PMI THE WORD THAT COMES TO MIND WE HEARD THIS MORNING, IS OPPORTUNITY AND PASSION. I'M EXCITED ABOUT IT AS A MOM. I WAS BACK 15 YEARS AGO IT WAS VIA FEDERAL EXPRESS. I ALSO DID WHAT WE CALLED BACK THEN A SPRAY AND PRAY WHEN I DONATED MY LATE HUSBAND'S TISSUE, RARE SYNOVIAL CELL SARCOMA SO I SENT TO EVERY RESEARCHER AND EVERY INSTITUTE THAT I COULD, NOT KNOWING IF ANYTHING HAPPENED SO NOW PMI I THINK FOR ENTHUSIASTIC PEOPLE WHO WANT TO SHARE WITH DATA, SHARE BIOSPECIMENS HOPEFULLY WE CAN CREATE SOMETHING TO CAPTURE THAT PASSION AND THEIR DATA. TODAY WE'RE ESTABLISHING COLLABORATIVE AND INCLUSIVE GOVERNANCE IN A LARGE STUDY AND I THOUGHT ABOUT THIS TITLE AND WE HAVE THE PRIVILEGE OF HAVING CONVERSATION LAST WEEK IN BOSTON ORGANIZED BY PMI STAFF AND THAT THERE ARE LITTLE WORKING GROUPS THAT FORMED AND WE LOOK AT GOVERNANCE AND WE THOUGHT AS LUCIA SAID THIS MORNING MAYBE WE SHOULD START CHANGING OUR LANGUAGE A LITTLE BIT. AND GOVERNANCE DIDN'T REPRESENT WHAT'S NOW HAPPENING IN PMI AT PCORI IN PATIENT DRIVEN RESEARCH WHERE MORE COLLABORATIVE CONTINUUM SO I DON'T KNOW IF GOVERNANCE IS THE RIGHT WORD BUT IT'S IMPORTANT, AS SPERO SAID WE NEED TO KNOW WHO MAKES THE DECISIONS, ROLES AND RESPONSIBILITIES AND SO I WILL ADDRESS THAT TODAY. SO I'M GOING TO TALK ABOUT PCORI THE PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE FORMED IN 2010 BY AFFORDABLE CARE ACT. THE UNDERLYING PREMISE OF PCORI, THIS WAS A MISSION THAT WAS CREATED BY OUR BOARD IS TO SUPPORT LE SEARCH GUIDED BY PATIENTS CAREGIVERS AND BROADER HEALTHCARE COMMUNITY SO PCORI IS TAKING THAT SERIOUSLY. THEY HAVE TWO FUNDING CRITERIA, ONE ALL RESEARCH WE FUND MUST BE BASED ON OUTCOMES THAT MATTER TO PATIENTS AND THE OTHER CRITERIA IS PATIENTS AND STAKEHOLDERS HAVE A TEAM APPROACH MUST BE ENGAGED AS A TEAM MEMBER, NOT TALKING THE SUBJECTS OF THE PARTICIPANTS, BUT AS A TEAM MEMBER ON THAT DESIGN TEAM, CREATING IT, PLANNING IT, CONDUCTING IT AND DISSEMINATING IT. SO WE SHOOK UP THE RESEARCH COMMITTEE A BIT, BUT IT'S FASCINATING THE TO WATCH THE EVOLUTION OF RESEARCH WHERE PATIENTS AND OTHERS ARE TRUE TEAM MEMBERS. SO WE TOOK THAT PRINCIPLE ENGAGING PATIENTS AT EVERY LEVEL AND EMBEDDED THAT IN PCORNET, THAT'S A DATA RESEARCH NETWORK, EXPERTS IN THE ROOM TELL YOU MORE. WE HAVE PEOPLE FROM OUR PPN, SUE FRIEDMAN IS HERE, CDRNs HERE SO I WOULD ENCOURAGE IF YOU WANT TO KNOW MORE ABOUT THE DATA NETWORK TO SPEAK WITH THEM, TODAY I'M GOING TO FOCUS ON PATIENT ENGAGEMENT AND OTHER STAKEHOLDER ENGAGEMENT IN THE NETWORK AND THE SPECIFIC PROGRAMS. A LOT TODAY HAS GONE BACK TO THE WORD TRUST. AND ONE PREMISE PCORI BUILT ON IS THE PREMISE IF WE ENGAGE PATIENTS AND OTHERS FROM THE VERY BEGINNING, KIND OF THE GOOGLE PRINCIPLE, START WITH THE END USER AND ALL HE WILL WILL FOLLOW. OTHER PATIENTS AND STAKEHOLDERS UP FRONT WE WILL CREATE RESEARCH FINDINGS THAT ARE MORE TRUSTWORTHY MORE RELEVANT, MORE MEANINGFUL AND WE THINK WILL GET IMPLEMENTED FASTER HAVING PATIENTS THERE AS TEAM MEMBERS. SO AS YOU CAN SEE HERE, WE HAVE 11 CLINICAL DATA RESEARCH NETWORKS OR LARGE HEALTHCARE SYSTEMS, THOUGH WE HAVE 18 PATIENT POWERED RESEARCH NETWORKS YOU'LL HEAR FROM THEM THIS AFTERNOON THAT IS FUELED BY AND DRIVEN BY PATIENTS, THEIR DATA THEIR COMMUNITIES FAMILIES, SO WHEN WE SAY PATIENT CENTERED DATA RESEARCH NETWORK, WHAT DOES THAT REALLY MEAN? PCORI BUILT THIS FRAMEWORK TO HELP THOSE APPLYING TO THE CLINICAL DATA RESEARCH NETWORK AND PATIENT POWERED RESEARCH NETWORK UNDERSTAND WHERE WE THOUGHT PATIENTS SHOULD BE ENGAGED THROUGHOUT THE DEVELOPMENT OF THIS INFRASTRUCTURE. SO YOU CAN SEE HERE THAT WE REALLY ENCOURAGE PATIENT ENGAGEMENT IN NETWORK RECRUITMENT AND RETENTION WHICH YOU HEARD EARLIER TODAY IN GOVERNANCE THAT WE'RE GOING TO FOCUS ON DURING THE PANEL, COLLECTING AND SHARING OF DATA WHICH I THINK ALSO HEARING THROUGHOUT THE DAY AND NETWORK COLLABORATION. I WON'T READ EACH ONE BUT FOCUS ON GOVERNANCE BUT WE WANT TO SEE PATIENT ENGAGEMENT THROUGHOUT EACH ELEMENT THAT YOU SEE IN THIS FRAMEWORK. AGAIN, THINKING THAT THERE'S GREATER LIKELIHOOD THAT PATIENTS WILL INDEED PARTICIPATE IN THIS RESEARCH AND DONATE THEIR DATA AND THEY GET INVOLVED IN THE DESIGN OF THE RESEARCH. WE WILL TALK ABOUT THE REST OF THE PANEL TODAY PATIENTS AS PARTNERS, IN THE DEVELOPMENT OF THE NETWORK GOVERNANCE STRUCTURE, THE ROLES AN RESPONSIBILITIES, THE DEVELOPMENT OF PROCEDURES BY LAWS AND POLICIES FOR THE NETWORK. THAT'S INCLUDING POLICIES FOR DATA SHARING AGREEMENTS FOR WHAT PATIENT REPORTED OUTCOMES ARE IMPORTANT TO THE PATIENT COMMUNITY TO COLLECT AND STUDY. CONSENT DEVELOPMENT PROCESS AND TOPIC PRIORITIZATION. WANT TO MAKE SURE STUDENTS ENGAGE DETERMINING WHAT IT IS THAT'S GOING TO BE STUDIED BECAUSE WE HEARD EARLIER TODAY IF THERE'S NOT REPRESENTED WHAT THE PATIENT COMMUNITY IS INTERESTED IN, IT MAYBE DIFFICULT TO RECRUIT AND HAVE A SUCCESSFUL STUDY. SO IN THINKING ABOUT GOVERNANCE, AGAIN, I WANTED TO TALK IS THIS SETTING SENDING THE THE RIGHT MESSAGE SO WHEN WE WERE SPEAKING TOGETHER AT THE PMI EVENT WE GRAVITATED TO TODAY IN GOVERNANCE WE'RE SEEING AND PCORI THE RESEARCH WE FUND AND OTHERS IN THE ROOM CAN CONFIRM WITHIN THE PPRN AND CDRN IT'S EVOLVING ALMOST A CONTINUUM OF ENGAGEMENT RATHER THAN TRANSACTIONAL ENGAGEMENT, PIECE BY PIECE, IS MORE A CONTINUAL ENGAGEMENT WITH A MULTI-DIRECTIONAL COMMUNICATION WHERE PEOPLE ARE WEARING DIFFERENT HATS AT DIFFERENT TIMES SO I DON'T HAVE A REAL PICTURE TO SHOW BUT WE HAVE SEEN THIS CONTINUUM OF ENGAGEMENT BASED ON PRINCIPLES. I THINK NO MATTER WHAT THIS STRUCTURE IS OF YOUR GOVERNANCE, OR THE GOVERNANCE OF THESE CDRNs IF THE UNDERLYING PRINCIPLES ARE ABSENT, I THINK THIS IS GOING TO BE CHALLENGING. SO I CAN'T STRESS ENOUGH THE IMPORTANCE OF THESE PRINCIPLES WE HAVE HEARD AT PMI LAST WEEK AND WE HAVE -- WERE LEARNING WITH ENGAGED RESEARCH COMMUNITY, IN TERMS OF PARTNER SHIP, SOMETHING THAT WAS EARLIER MENTIONED, COMPENSATION, WE SEE AND WE HAVE HEARD FROM THE PATIENT COMMUNITY THAT WHEN PATIENTS ARE DESIGNERS AND CO-PIs AND INFORMERS AN CONSULTANTS ON THE DESIGN TEAM THE PATIENT COMMUNITY DOES EXPECT TO BE COMPENSATED FAIRLY AND HE CAN TABLY. AND -- EQUITABLE AND PCORI INTRODUCED A PATIENT COMPENSATION FRAMEWORK BASED ON LEVEL OF ENGAGEMENT WHAT THEY'RE CONTRIBUTING. SO AS A GUIDE OUT THERE, NOT A DOLLAR FIGURE, WE THINK THAT THAT IS AN IMPORTANT METHOD REGARDING PARTNERSHIP, IS ON OUR WEBSITE. CO-LEARNING. WANT TO LEARN FROM EACH OTHER. PATIENTS ARE LEARNING FROM THE RESEARCHERS AND RESEARCHERS ARE LEARNING A LOT ABOUT THE PATIENTS AND THEIR DISEASE, THEIR COMMUNITY, WHAT'S IMPORTANT TO THEM, RECIPROCAL RELATIONSHIPS, TRANSPARENCY WE SPOKE ABOUT THIS MORNING. AND HONESTY AND RESPECT. SO WE'RE TALKING ABOUT THIS GOVERNANCE, IT'S A COMBINATION OF ROLES RESPONSIBILITIES AND PRINCIPLES WRAPPED INTO ONE IT'S KIND OF LIKE -- I'M GET MAKERIED IN THREE WEEKS SO -- MARRIED IN THREE WEEKS SO LIKE A SCIENCE PREUP IN WE COMING TO WITH EXPECTATIONS AN ROLES AND WHEN WORKING TOGETHER WHAT WE CREATE TOGETHER IS COMMUNITY PROPERTY SO WE ALL CREATE IT, WE ALL OWN IT. SO I'M SEEING THE EVOLUTION OF PATIENT ENGAGEMENT AND WHEN I SAY PATIENT I KNOW THAT PMI USES PARTICIPANT BUT IT IS ENGRAINED IN MY MIND, PIECES AND PARTNERS WHO ARE NECESSARY ON THAT TEAM WERE REALLY EVOLUTION AWAY FROM A TRANSACTION OF PATIENT ENGAGEMENT, HAVE FOCUS GROUP JUST GIVE THEIR DATA, JUST BRING THEM INTO DESIGN RESEARCH QUESTION BUT WE SEE IT NOW IS A CONTINUUM OF IN A MULTI-DIRECTIONAL COMMUNICATION. SO PCORI HAS LIKE I MENTIONED, WE HAVE CREATED PCORNET SO WE LOOK AT WHAT'S HAPPENING WITH GOVERNANCE IN THE PCORNET PORTFOLIO AND I HAVE EXAMPLES OUTSIDE OF PCORNET IN LARGER RESEARCH PORTFOLIO SO WE CONSIDER OURSELVES A LEARNING LABORATORY. LIKE WAS SPERO SAID THERE IS NO ONE MODEL THAT WE CAN SAY IS THE BESTFUL BUT WHAT WE'RE DOING IS COLLECTING AND LOOKING AT PATTERNS AND WHAT WE SEE IN GETTING FEEDBACK FROM THE RESEARCH TEAM. SO HERE IS ONE MODEL. A GOPHERING BOARDS YOU CAN SEE -- GOVERNING BOAR, SCALE AT THAT TIME BOTTOM, THE GOVERNING BOARD IS MAJORITY PATIENT MAJORITY LED OR PATIENT COMMUNITY MAJORITY LED. ANOTHER MODEL IS WITH THE STEERING COMMITTEE AND VARIOUS COMMITTEES UNDER THAT, LOWER THAN 50% PATIENTS BUT SPRINKLED THROUGHOUT THE ENTIRE GOVERNANCE STRUCTURE. A THIRD MODEL IS PECKTIVE COMMITTEE -- EXECUTIVE COMMITTEE WITH STEERING COMMITTEE AND OTHER COMMITTEES WITH A SOLID 100% PATIENT ADVISORY COUNCIL. SO THIS IS THESE THREE MODELS ARE IMPORTANT VARIATIONS AND AGAIN, NO ONE MODEL IS SHOWING THAT IT'S BETTER THAN THE OTHER YET PCORI WILL BE FOLLOWING THIS. AND I'M FAMILIAR WITH ANOTHER MODEL WHERE IT SHOULD BE LIKE CONSENT TRACHE CIRCLES WHERE THE PATIENTS ARE IN THE CENTER ABOARD OF GOVERNANCE OF PATIENTS WITH RINGS OF ADVISORS SO RESEARCH ADVISORS AROUND THAT AND THEN OTHER AGENCY, CDC AND HRSA, JOINT COMMISSION, RESEARCH INSTITUTES, OTHER PATIENT ORGANIZATIONS AND THEN AN MOU OR MEMORANDUM OF UNDERSTANDING ACROSS THAT ENTIRE GROUP THAT THEY ALL SIGN YOU WILL HEAR CONSUELO TALK THEIR MEMORANDUM OF UNDERSTANDING. SO I'M GOING TO GO THROUGH A FEW EXAMPLES. I WILL START WITH CDRN, A CLINICAL DATA RESEARCH NETWORK, THIS PARTICULAR EXAMPLE IS A STAKEHOLDER GOVERNED CLINICAL DATA NETWORK THAT INTEGRATES DATA FROM THREE EXISTING NETWORKS SO COLLECTIVELY, THEY ACTUALLY HAVE 21 MILLION PATIENTS AT THEIR FINGERTIPS. THERE'S A QUERY OR RESEARCH, THEY HAVE THIS POOL THEY CAN POTENTIALLY ACCESS. SO THIS IS THE POWER OF BIG DATA. SO THERE ARE CLINICIANS PATIENT, PATIENT ADVOCATES, CAREGIVERS, ALL PARTICIPATE IN GOVERNANCE, ALONG WITH RESEARCHERS AND WITH THE SYSTEM LEADERS. IS THIS N IS GOVERNANCE STRUCTURE, COMPREHENSIVE BUT BROKEN DOWN INTO DIFFERENT PANELS SO I'M GOING TO WALK YOU THROUGH WHAT ONE OF THE STRUCTURES LOOKS LIKE. SO IN THIS CTRN THEY HAVE A STAKEHOLDER AD SIZERY BOARD, 26 CLINICS OR PATIENTS OR CAREGIVERS AND ADVOCATES, THIS PARTICULAR ADVISORY BOARD IS CHAIRED BY TWO PATIENTS SO THEY HAVE A STRONG PATIENT VOICE. UNDER THIS ADVISORY BOARD THEY HAVE TWO WORKING GROUPS YOU CAN SEE A GOVERNANCE WORK GROUP AND ALSO HAVE AN EDUCATION WORK GROUP. I WILL TALK ABOUT BOTH GROUPS SO THE GOVERNANCE WORK GROUP ENSURES NETWORK GOVERNANCE REQUIREMENTS AND ADHERENCE, THIS STAKEHOLDER BOARD IS WATCHING TO ENSURE THAT THE GOVERNANCE -- THE INTEGRITY IS MAINTAINED. THEY ALSO OVERSEE ENSURE AND REVIEW ALL THE POLICIES TO MAKE SURE THEY'RE PATIENT CENTERED AS POSSIBLE, THAT IS INTEGRATED THE PATIENT VOICE. THEN THE EDUCATION WORKING GROUP -- I'M SORRY, THE EDUCATION WORKING GROUP LOOKS AT THE PRIORITIZATION PROCESS, H THIS ENSURES THE PATIENT VOICE IS INFUSED IN DECIDING WHAT RESEARCH IS CONDUCTED BASE ON WHAT'S IMPORTANT TO THEM, WHAT RESEARCH QUESTIONS AND WHAT OUTCOMES. FINALLY THEY HAVE A STAKEHOLDER RESEARCH PRIORITIZATION PANEL AND THIS IS MADE OF 360 PATIENTS CLINICIAN AND RESEARCHERS AND THEY PROVIDE INPUT THROUGH A STRUCTURED ON LINE TOOL, VERY CONSENSUS DRIVEN, APPEARS TO BE VERY FAIR, VERY ROBUST SO WE'RE EAGER TO SEE THE RESULTS FROM THIS PARTICULAR STRUCTURE. I WANT YOU TO SEE THEY HAVE A ROBUST DECISION MAKING AND DELIBERATION PROCESS, AS YOU CAN SEE THE PATIENTS REQUESTED TO DELIBERATE OPENNESS AN TRANSPARENCY, INDIVIDUAL CHOICE AND SAFEGUARD CREATIVE BASED ON THE COMMUNITY AND PRIORITIZATION DELIBERATION PROCESS THEY CREATED CRITERIA, THE PATIENT COMMUNITY AND THE OTHER STAKEHOLDERS TO LOOK AT WHAT WOULD THEY BE -- WHAT WOULD THE PRIORITIZATION PROCESS BE AND HOW THEY DELIBERATE EACH POTENTIAL RESEARCH AREA, YOU CAN SEE FEASIBILITY SCIENTIFIC MERIT AND ETHICAL ACCORDANCES. SO LAST EXAMPLE I WANT TO SHOW IS PATIENT POWERED RESEARCH NETWORK. WE HAVE PPRN IN THIS ROOM SO FROM'S QUESTIONS SPECIFIC TO A PPRN, I WELCOME THEM TO THE MIC AND GIVE YOUR DIRECT INPUT BUT EXAMPLE OF ONE PPRN THAT WAS REALLY CREATED BY PATIENTS FOR PATIENTS. BPI IS A PATIENT HERSELF AND PATIENT VERSUS A ONE YEAR COMMITMENT AND THEY HAVE TO GO THROUGH RESEARCH ADVOCACY TRAINING SO THAT'S A REQUIREMENT. THEY HAVE A STEERING COMMITTEE THAT MEETS BIMONTHLY AND THEY HAVE AN EXECUTIVE COMMITTEE THAT MEET WEEKLY. YOU CAN SEE HOW ROBUST WHEN TALKING ENGAGEMENT EARLIER ENGAGING EARLY AND OFTEN SO THIS IS A GREAT EXAMPLE OF EARLY AND OFTEN. THE EXECUTIVE ANY ECONOMY AND STEERING COMMITTEE CREATED THE PROFILE ROLES AND RESPONSIBILITIES OF GOVERNANCE STRUCTURE. THEY HAVE ADVOCACY PARTNERS THAT ARE ALSO PARTNERS AND THEY ARE ON THE NETWORK STEER COMMITTEE AND WORK GROUPS. THE THREE GROUPS OF STEERING COMMITTEE MEMBERS REQUIRED TO SERVE ON AT LEAST ONE SO REALLY ACTIVE IN ROLLING UP SLEEVES DETERMINING HOW GOVERNANCE IS GOING TO TAKE PLACE. SO I'M GOING TO STOP THERE. I HAVE IN OUR DIALOGUE I CAN SHARE WHAT PCORI IS SEEING IN TERMS OF ENGAGING THOSE TO INCLUDE DIVERSITY IN GOVERNANCE, WE HAVE EXAMPLES WE CAN TALK ABOUT THAT IN OUR DIALOGUE. SO I WILL STOP THERE. THANK YOU. [APPLAUSE] >> THAT PHRASE WAS PREUP IN ACTUAL -- IT SORT OF WORKS. >> PARTNERSHIP PRE-UP IN. >> THAT'S GREAT. AND NEXT WE HAVE AL RICHMOND. >> GOOD AFTERNOON. HOPE YOU ENJOYED YOUR LUNCH AND HAD A MOMENT TO STROLL MAYBE ACROSS THE CAMPUS A BIT. SUCH A PLEASURE TO BE HERE AND I APPRECIATE THE FACT RAY REACHED OUT TO ME AND SO IRONIC THAT RAY AND SUSAN AND MYSELF WERE BACK IN THE WINTER WERE PART OF A ROUND TABLE THAT WAS SPONSORED BY PCORI SO WHEN I RECEIVE THE INVITATION TO COME UP WITH TRYING TO THINK THROUGH WHAT MIGHT BE SOME OPPORTUNITIES FOR US AT COMMUNITY CAMPUS PARTNERSHIPS TO SHARE THE WORK WE'RE DOING, AND I WANT TO TALK ABOUT OUR ORGANIZATION AND HIGHLIGHT ONE OF THE PROGRAMS THAT WE ARE VERY EXCITED ABOUT, IT'S COME TO AN END BUT WE HAVE A NEW ITERATION OF IT AND HOW SERVES AS A GUIDE FOR US TO THINK ABOUT POPULATION HEALTH AND THINK HOW WE MIGHT ADDRESS THESE ISSUES AROUND GOVERNANCE. I HAD MY HAND UP IN THE LAST SESSION AND I WAS LIKE NO, TAKE YOUR HAND DOWN BECAUSE YOU'LL HAVE AN OPPORTUNITY TO TALK A LITTLE BIT LATER. SO ONE THING THAT I'LL TALK ABOUT IS ISSUE OF TRUST AND HOW WE'RE DOING THIS WORK. SO THE MISSION OF COMMUNITY CAMPUS PARTNERSHIPS FOR HEALTH IS PROMOTE EQUITY AND SOCIAL PARTNERSHIPS THROUGH COMMUNITIES AN ACADEMIC INSTITUTIONS, WE'RE 18 YEARS OLD SO WE HAVE A RICH ROBUST HISTORY AS RELATES TO SEEKING TO BRIDGE THE WORK DONE BOTH ON THE SIDE OF ACADEMY BUT ALSO COMMUNITY TO ADDRESS HEALTH ISSUES, WITH THE LENS OF SOCIAL JUSTICE AN HEALTH EQUITY. ONE PROGRAM WE WORKED WITH THAT WE ARE PROUD ABOUT IS OUR COMMUNITY RESEARCH PROCESSES SO KNOWN BY DIFFERENT NAMES AND SO EVEN TODAY I HAVE BEEN REALLY EXCITED TO HEAR ABOUT THE DIFFERENT ITERATIONS OF THIS WORK THAT'S TAKEN PLACE ACROSS THE COUNTRY. SO THE BACKGROUND OF THIS WORK IS GROUPS LIKE PMI GROUP AND OTHERS RECOGNIZE COMMUNITY ENGAGED RESEARCH IS CRITICAL TOWNSING BUSINESSTIS PAIR THETIES AND DEVELOPING REVIEW PROCESSES TO ENSURE ETHICS OF RESEARCH DONE IN THEIR COMMUNITY. SO WE'RE ALL VERY FAMILIAR WITH THE IRB PROCESS WHICH ADDRESSES PROTECTING THE RIGHTS OF INDIVIDUALS THE IMMUNITY REVIEW PROCESS IS LOOKING TO PROTECT THE IMMUNITY. IT SEEKS TO ANSWER TO QUESTION WHO PROTECTS THE COMMUNITY. YOU HEARD THIS MORNING SEVERAL EXAMPLES ALLUDED TO AROUND ISSUES AS IT RELATES TO COMMUNITIES NOT HAVING TRUST OR VIOLATED RESULT OF ACTS AND EVEN ACTS IN RESEARCH SO THE PROGRAM COMMUNITY IN PROCESS HAD SEVERAL AIMS NUMBER ONE TO ARTICULATE THE RESEARCH ETHICS AND INTEGRITY CONSIDERATIONS AND EXPERIENCES, AND OUTCOMES OF COMMUNITY BASED PROCESSES FOR RESEARCH ETHICS REVIEW SO THE WORK OUR AIMS HAVE BEEN FOCUSED IN HELPING US TO UNDERSTAND WHAT ROLE COMMUNITY PROCESSES PLAY IN INFLUENCING THE RESEARCH BEING DONE IN IMMUNITIES BUT ALSO TO ADDRESS SOME OF THE ETHICAL ISSUES AND CONSIDERATIONS. WHAT I THINK ABOUT THIS WORK, I THINK ABOUT IT IN TERMS OF COMMUNITY REVIEW PROCESS ABOUT PLACING THE WORK IN CONTEXT. WE HAVE BEEN ALLUDING TO A LOT OF THAT THIS MORNING. WE HAVE BEEN TALKING ABOUT WHERE PEOPLE ARE, WHAT PEOPLE ARE DOING AND DESCRIBING THE COMMUNITY, THE COMMUNITY REVIEW PROCESS TARGETS THE CONTEXT IN WHICH RESEARCH TAKES PLACE THINKING ABOUT THE FACT WE THINK OF INDIVIDUALS AS AN INDIVIDUAL VOID OF ANY COMMUNITY, VOID OF ANY EXPERIENCES, VOID OF CULTURE AND ALL OF THAT. SO THE COMMUNITY REVIEW PROCESS IS DESIGNED TO TAKE ALL OF THAT INTO CONSIDERATION BEFORE WE GO INTO THE COMMUNITY AND DO RESEARCH. SO COMMUNITY CAMPUS PARTNERSHIPS FOR HEALTH CONVENED A GROUP OF FIVE DIFFERENT COMMUNITY BASED ORGANIZATION ACROSS THE UNITED STATES. THAT ORGANIZED COMMUNITY REVIEWED PROCESS. YOU SEE LISTED THE FIVE COMMUNITIES, VERY UNIQUE WORKING WITH DIFFERENT POPULATIONS ADDRESSING DIFFER ISSUES SO THE COMMUNITY REVIEW PROCESS DIFFERS FROM ONE SIDE TO THE NEXT BUT THERE'S COMMON THREADS WEAVED THROUGH EACH COMMUNITY PROCESSES. SO FOR US WE BELIEVE THE COMMUNITY REVIEW PROCESS IS PROVIDES A SIGNIFICANT BENEFIT TO THE COMMUNITY BUT ALSO ENHANCES THE RESEARCH. IT ENHANCES THE ETHICAL DESIGN AND CONDUCT OF RESEARCH IN THE COMMUNITY. AND MANY WAY IT IS THE IMMUNITY REVIEW PROCESS PLACES THE COMMUNITY AT THE HELM OF THE RESEARCH. IT CHALLENGES RESEARCH IN SOME WAYS TO GIVE UP THIS POWER, SUE WAS TALKING POWER DIFFERENTIAL, WHILE THOSE OF YOU WHO ARE RESEARCHERS SAY I'M IN A NICE PERSON, I'M A GOOD PERSON, ETHICAL PERSON, I'M A MORAL PERSON, I WOULDN'T HARM ANYONE, ONE PERSON SAID IT'S NOT YOU I'M CONCERNED ABOUT. IT'S ALL THE PEOPLE THAT CAME BEFORE YOU. AND MAY COME AFTER YOU THAT I'M MOST CONCERNED ABOUT. SO COMMUNITY REVIEW PROCESS TAKES THAT INTO CONSIDERATION. IT LOOKS AROUND LITERACY CAPACITY AND OWNERSHIP OF COMMUNITY. IT ASKS QUESTIONS WHO OWN IT IS DATA AND RESEARCH. IT ALSO TALKS ABOUT THE WORK THAT'S DONE BEFORE YOU CAME TO THE COMMUNITY, AND MOST IMPORTANT TO THE COMMUNITY, A LOT OF THIS WORK AROUND COMMUNITY REVIEW PROCESS HAS BEEN CHAMPIONED BY NATIVE COMMUNITIES WHO AS SOVEREIGN NATIONS ARE SAYING THAT WHILE WE MAY HAVE AN INDIVIDUAL -- IRB BOARD IT'S ALSO IMPORTANT THE TAKE INTO CONSIDERATION THE CULTURE, OUR TRADITION, TAKE INTO CONSIDERATION THE MORALS AND VALUE OF THE COMMUNITY AS WELL. SO ADS WE LOOK WE RECOGNIZE SIGNIFICANT CHALLENGES RELATING TO THE OPERATION OF THESE DIFFERENT GROUPS, PRIMARILY AROUND INADEQUATE PRODUCT, FUNDING AND RESPECT AND RECOGNITION. I WILL SAY ABOUT RESPECT AND RECOGNITION PIECE AND WHAT WE FOUND OFTENTIMES IMMUNITY PROCESSES HAVE TO WORK THROUGH THE IDEA THAT THEY ARE NOT TRYING TO UNDO THE WORK OF IRB. BUT TRYING TO ENHANCE RESEARCH BY TALKING EARLY ON IN THE PROCESS SO THEY CAN ACTUALLY REFINE THE RESEARCH AND IMPROVE RESEARCH GOING ON IN THE COMMUNITY. THE REVIEW PROCESS LOOKS AT RECRUITMENT AND RETENTION ISSUES AND PROVIDES SUGGESTIONS TO RESEARCH AROUND HOW THAT WORK IS DONE IN THE COMMUNITY. SO AS I WAS THINKING ABOUT WORK OF THE PMI, AND I WAS TALKING THIS PROVIDES AN OPPORTUNITY TO USE THIS CRP PROCESS OR FRAMEWORK AS AN OPPORTUNITY FOR US TO ENGAGE POPULATIONS LARGE GROUPS OF PEOPLE IN OUR WORK BUT TAKING INTO CONSIDERATION THE COMMUNITY AND THE CONTEXT OF ALL THE WORK WE'RE DOING. SO THERE WAS SEVERAL RECOMMENDATIONS MADE IN TERMS OF ON THE PART OF THE COMMUNITY. WE RECOGNIZE ISSUES AROUND CAPACITY, KNOWLEDGE, SKILL DEVELOPMENT AND SO WE HIGHLIGHTED SEVERAL POINTS THEY WERE MADE AS A RESULT OF DOING THIS CROSS ANALYSIS, WE RECOGNIZE FIRST OF ALL WE NEEDED PROFESSIONAL DEVELOPMENT OPPORTUNITIES FOR THOSE INDIVIDUALS WHO SERVE ON THE COMMUNITY REVIEW BOARDS OR COMMUNITY REVIEW PROCESS. SO INDIVIDUALS ARE COMING TO THIS AS MEMBERS OF THE COMMUNITY, THEY MAY OR MAY NOT HAVE AN UNDERSTANDING OF RESEARCH BUT MAY HAVE A CERTAINLY THEY HAVE AN UNDERSTANDING OF THE COMMUNITY THEREFORE THERE'S SKILL DEVELOPMENT THAT'S IMPORTANT. AS I WAS LISTENING TO THE CONVERSATION THIS MORNING, HOW MUCH INFORMATION SHOULD BE PROVIDED TO THE COMMUNITY I THOUGHT TO MYSELF HOW WOW, WHY DON'T WE GET MORE CREDIT TO THE COMMUNITY. WE SHOULD GIVE CREDIT TO THE COMMUNITY. MYSELF AS AN AFRICAN AMERICAN MALE I HAVE BEEN APPROACHED A NUMBER OF TIMES BEING IN RESEARCH STUDY SO IT'S PERSONAL IN SOME WAYS, SO THEREFORE I HAVE THE CAPACITY TO UNDERSTAND, ANYTHING A RESEARCHER PUTS IN FRONT OF ME. I FEEL I HAVE THE CAPACITY, MY TWIN SISTER WHO THIS WEEK I ASKED OTHER PARTICIPATE, WE PARTICIPATE IN A TWIN STUDY, I'M A SOCIAL WORKER SHE'S A NURSE. WE FEEL WE CAN UNDERSTAND THE PROCESS, WE CAN UNDERSTAND THE RESEARCH QUESTION ABOUT ALL THAT, I DON'T THINK I'M AN ANOMALY AND I DON'T THINK OTHER PATIENTS AND PEOPLE AND COMMUNITIES ARE ABOUT ANOMALY. I BELIEVE THEY HAVE THE PASS TO UNDERSTAND BASIC SCIENCE, UNDERSTAND EVERYTHING BUT LET'S GIVE THE COMMUNITY CREDIT FOR WHAT THEY DO KNOW. ALSO IT HELPS TO JOIN WITH ALLIES IN THE ACADEMIC COMMUNITY AND FUNDER COMMUNITY THAT WE RECOMMEND THEY WOULD ACTUALLY COME TOGETHER TO HELP SUPPORT COMMUNITY REVIEW PROCESSES THAT ARE OCCURRING IN THE COMMUNITY ACROSS THE COUNTRY. AS RELATES TO INSTITUTIONAL IRB BOARDS WE MADE SEVERAL RECOMMENDATIONS TO INCREASE NUMBER OF COMMUNITY PARTNERS ON INSTITUTIONAL IRBs. TO ALSO ENSURE COMMUNITY REVIEWERS ARE GENUINELY CONNECTED AND ARE AT THE LEAST FAMILIAR WITH THE COMMUNITY WIDOWING RESEARCH AND NOT JUST WE TALKED ABOUT THE HELICOPTER RESEARCH FLYING IN, MEMBER IT'S CLICHE IN SOME WAYS BUT IT MOVES BEYOND THAT TOTAL ENGAGEMENT WITHIN THE COMMUNITY. ADDITIONAL RECOMMENDATIONS FOR FUNDING AND EXPANSION OF COMMUNITY REVIEW PROCESSES. ALL WHO SUPPORT COMMUNITY ENGAGE RESEARCH TO SHARE BEST PRACTICES AND LESSONS LEARNEDND AS WE MOVE FORWARD, SHARED BEST PRACTICES AND CONNECT AND BUILD A NETWORK AND COMMUNITY PROCESSES IN THE UNITE. FEDERAL POLICY MAKERS INCLUDE CONSIDER REPLACING CURRENT IRB STRUCTURE WHICH IS RADICAL. WITH THE RESEARCH ETHICS REVIEW BOARD INDEPENDENT FROM THE ENTITIES CONDUCTING THE RESEARCH. SO IT MAKES IT VERY IMPARTIAL. SO BY ENGAGING THE COMMUNITY AND WORKING IN TANDEM WITH THE COMMUNITY AS WELL. SO NEXT ITERATION OF WORK IS FUNDED BY THE GREENWALD FOUNDATION AND WE'RE DOING THE GREENWALD FOUNDATION STUDY WHICH ARTICULATES ETHICAL PRINCIPLES FOR COMMUNITY ENGAGED RESEARCH, WE FELT LIKE WE STARTED WITH A STUDY SEVERAL YEARS AGO AT OVER 100 COMMUNITY REVIEW PROCESSES IN THE UNITED STATES AND WE TARGETED FIVE OF THEM AND HAVE BEEN WORKING WITH THEM AND THAT SAME COHORT OF FIVE WORKING WITH US NOW AROUND DRAFTING REVISIONS TO THE BELMONT REPORT, TO LOOK AT ETHICAL CONSIDERATIONS FOR THE COMMUNITY. MOVING FROM THE INDIVIDUAL BUT PLACENING THE CONTEXT OF COMMUNITY. I SHOULD ACKNOWLEDGE INITIAL WORK WAS ALSO FUNDED BY THE NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES, AND AT THIS PARTICULAR WORK IS FUNDED BY GREEN WHAT WOULD FOUNDATION. I WANT TO ACKNOWLEDGE COMMUNITY MEMBERS ACROSS THE COUNTRY WHO HAVE BEEN PART OF HELPING US TO BETTER UNDERSTAND COMMUNITY REVIEW PROCESS. AND CONTRIBUTING GREATLY TO STUDY THAT WE HAVE DONE. OUR CASE STUDY CAN BE FOUND AT THE WEBSITE, I WOULD ENCOURAGE YOU LOOK AT THAT BEFORE I JOINED COMMUNITY CAMPUS PARTNERSHIPS AS EXECUTIVE DIRECTOR, I WAS EXCITED TO SEE THIS REPORT AND I FEEL THAT IT REALLY REPRESENTS THE BEST, IT'S A GREAT EXAMPLE, IT HIGHLIGHTS THE GENERAL FINDINGS OF WORK BUT ALSO HIGHLIGHTS THE SPECIFIC CHALLENGES AND ISSUES THAT EACH OF THE COMMUNITY REVIEW PROCESSES HAVE UNDERGONE. AGAIN, THANK YOU, IT'S A PLEASURE TO BE WITH YOU TODAY. [APPLAUSE] >> THANK YOU VERY MUCH. TWO EXTREMELY STIMULATING PRESENTATIONS, IN PARTICULAR, NOTE YOUR REFERENCE TO AMERICAN INDIAN ALASKA NATIVE COMMUNITY AND SERIES OF HISTORICAL INCIDENTS IN OUR PART, THE BARREL ALCOHOL STUDY, THE RECENT (INAUDIBLE) ARIZONA STATE UNIVERSITY ISSUES. DON'T REALLY COME UP AT THE INDIVIDUAL LEVEL BUT THEY ARE MATTER OF COMMUNITY AND CONTROL REGULATION FOR BENEFIT OF THE COMMUNITY WHICH IS ASSUMED ALSO BENEFIT RESPECTIVE MEMBERS SO THE PAIRING OF THOSE TWO PRESENTATIONS IS JUST WONDERFUL. WE'RE NEXT PRIVILEGED TO HAVE CONSUELO WILKINS DESCRIBE HER WORK IN A VERY SPECIFIC MANNER. THANK YOU. >> I'M THRILLED TO HAVE THE OPPORTUNITY TO TELL YOU ABOUT SOME OF OUR WORK IN COMMUNITY AND STAKEHOLDER ENGAGEMENT I WILL NOT TAKE SPERO'S COMMENT THAT THE OTHER TWO PRESENTATIONS ARE STIMULATING HIM EXPECTING THAT MINE WON'T B. BUT JUST IN CASE YOU HAD TWO STIMULATING PRESENTATIONS ALREADY. LET'S GO WITH THAT. SOILY DESCRIBE OUR FRAMEWORK OR GUIDE HOW WE TYPICALLY DESIGN A PROJECT THAT INVOLVE STAKEHOLDER OR COMMUNITY ENGAGEMENT. I HAVE THE PLEASURE OF LEAVING STAKEHOLDER ENGAGEMENT FOR OUR MID SOUTH CLINICAL DATA RESEARCH NETWORK BUT CO-LEAD COMMUNITY ENGAGEMENT FOR OUR CTSA. THIS IS REALLY A MODEL WE HAVE WORKED ON A COUPLE OF YEARS NOW AND I THINK IT'S IMPORTANT TO EMPHASIZE THAT ENGAGEMENT HAPPENS ACROSS THE CONTINUUM AND OFTEN WE ARE ONE WAY TO ENGAGE PEOPLE STAKEHOLDERS IN OUR WORK, MANY PROJECTS WE DESIGN HAVE MORE THAN ONE LEVEL, NOT TYPICALLY ALL THE LEVELS BUT I WILL GIVE AN EXAMPLE THAT HAS MULTIPLE LEVELS OF ENGAGEMENT. AS THE PANEL FOCUSES ON GOVERNANCE, I WILL SPEND MOST OF MY TIME TALKING ABOUT THAT BUT HIGHLIGHT THE FIGURE YOU SEE FROM THERE IS A DARK LINE THAT DIVIDING THE ADVISORY GROUPS IN THE LOWER AREAS ARE REVIEWERS AND CONSULTANTS KNOWLEDGE USERS, THE TYPICALLY PEOPLE ABOVE THE LINE OR LEADERSHIP ROLES ARE ENGAGED IN LONG TERM WAYS, AND THOSE WHO ARE BELOW THE LINE ARE INVOLVED FOR A SHORT PERIOD OF TILE, DOESN'T MEAN INVOLVEMENT IS LESS IMPORTANT OR THE TYPE OF INFORMATION CAN'T BE USED TO GUIDE THE WORK. SO I WANT TO HIGHLIGHT ONE SPECIFIC PROGRAM THAT WE HAVE AT VANDERBILT, OUR BIOVIEW, IT'S A BIOREPOSITORY. MANY OF YOU WHO ARE IN PRECISION MEDICINE WORK IN THIS SPACE ARE FAMILIAR WITH IT. WE HAVE NOW OVER 200,000 GENOTYPE SAMPLES LINKED TO ELECTRONIC HEALTH RECORDS AND IT HAS A COMMUNITY ADVISORY BOARD THAT'S BEEN IN PLACE FOR TEN YEARS NOW. THE COMMUNITY ADVISORY BOARD HAS BEEN VERY ACTIVE, IT ADVISES BIOVIEW ON STRATEGIES FOR ENGAGING STAKEHOLDERS, ALSO IT IS INVOLVED IN HOW WE COMMUNICATE WITH PATIENTS, THEY REVIEW PATIENT ORIENTED MATERIALS BUT THEY HAVE THE OPPORTUNITY AS WELL TO CRITIQUE, ASK FOR INFORMATION, THEY PROMPT SCIENTISTS TO DO MORE RESEARCH. ONE THING THAT'S IMPORTANT ABOUT ADVISORY BOARD IN A GOVERNANCE CONTEXT IS THAT MANY PROGRAMS OR STUDIES WILL HAVE AN ADVISORY BOARD BUT NOT OFTEN EMPOWERED TO DO ANYTHING. THEY SHOW UP, YOU READ THEM SOME INFORMATION, YOU GIVE A SLIDE SHOW, YOU DON'T REALLY GIVE A CHANCE TO PROVIDE INPUT. THAT IS NOT ENGAGEMENT. ENGAGEMENT IS BIDIRECTIONAL. THERE HAS TO BE EXCHANGE OF INFORMATION, YOU HAVE TO LEARN SOMETHING, YOU HAVE TO GIVE THEM THE OPPORTUNITY TO SHARE THAT. ONE THING THAT IS GREAT ABOUT THE BIOVIEW ADVISORY BOARD IS THEY GET TO DELIBERATE IN PRIVATE. SO JUST AS YOU DO WITH INTERNAL -- EXTERNAL ADVISORY BOARD THEY HEAR EVERYTHING YOU GET TO SAY, THEN YOU LEAVE THE ROOM AND THEY SAY WHAT THEY WANT TO SAY. I THINK THAT IS IMPORTANT IF YOU WANT HOP NEST FEEDBACK THAT YOU CAN USE TO TRANSFORM YOUR PROGRAMS, MEET YOUR RECRUITMENT GOALS, YOU HAVE TO GIVE PEOPLE THE OPPORTUNITY TO THINK ABOUT IT, JUSTIFY CAN'T JUST BRING TO THE TABLE AND SAY HEY THIS IS WHAT YOU WANT TO DO TELL ME RIGHT NOW. DOESN'T WORK THAT WAY. I HIGHLIGHT THIS ALSO, WE PUBLISHED ON SOME STAKEHOLDER ENGAGEMENT STRATEGIES, COMMUNITY ENGAGEMENT IN BIOVIEW. THIS IS IMPORTANT NOT JUST TO THE RESEARCH ENTERPRISE BUT ALSO TO THE PATIENTS, COMMUNITY MEMBERS TO KNOW THAT WE TAKE THEIR INPUT SERIOUSLY, WE WILL ACT ON IT WHAT HAVE WE LEARNED SO WE'RE SHARING THAT INFORMATION BROADLY. NEXT I'LL SWITCH TO OUR CLINICAL DATA RESEARCH NETWORK, IT IS FUNDED BY PCORI AS PART OF PCORNET PROGRAM THAT SUE MENTIONED. SO WE HAVE ONE OF THE 11 CLINICAL DATA RESEARCH NETWORKS, YOU CAN SEE THE MIDDLE FIGURE IS PATIENT AND STAKEHOLDER ENGAGEMENT, I DID NOT HAVE TO FIGHT TO HAVE IT IN THE MIDDLE BUT I DO FIGHT TO MAKE SURE THAT IT STAYS IN THE MIDDLE AND EVERYTHING THAT'S GOING AROUND THE CIRCLE IS RELEVANT AND INFORMED BY OUR STAKEHOLDER ENGAGEMENT GROUP, OUR TEAM. SOMETIME EASIER THAN OTHERS, THE HARDEST DECISIONS HAVE TO BE MADE RAPIDLY. OVERLOOK THINGS TO MAKE A DECISION RAPIDLY. WE HAVE IN PLACE GOVERNANCE THAT HELPS TO ALLEVIATE THAT AND MAKE SURE WE HAVE THE VOICE OF STAKEHOLDERS AT THE TABLE. THIS IS OUR STAKEHOLDER ENGAGEMENT STRATEGY. IT WAS PROPOSED PART OF OUR PHASE 1 OF OUR CLINICAL DATA RESEARCH NETWORK. YOU CAN SEE THE SECOND COLUMN FROM THE LEFT, NUMBER OF PEOPLE PROPOSED TO INVOLVE IN BUILDING THE INFRASTRUCTURE. OVER 5,500 PEOPLE. WHEN I PROPOSE THIS, SOME PEOPLE THOUGHT I WAS CRAZY AND I THINK MOST THINK I'M UNTIL CRAZY. YOU CAN SEE ON THE RIGHT THE PROGRESS WE MADE AND WE HAVE A COUPLE OF MORE MONTHS. I WOULD SAY IT'S MORE CHALLENGING TO ENGAGE CLINICIANS THAN HAS BEEN TO ENGAGE THE PATIENTS AND THE COMMUNITY MEMBERS. SO THOSE WHO ARE THINKING THIS IS REALLY HARD TO DO, IT IS NOT AS CHALLENGING AS YOU MIGHT THINK. FOR OUR GOVERNANCE WE HAVE TWO GOVERN GROUPS, ONE IS OUR OVERSIGHT COMMITTEE THAT IS COMPRISED OF 12 MEMBERS, TWO ARE PATIENT COMMUNITY STAKEHOLDERS. THEN WE HAVE A STAKEHOLDER ADVISORY COUNCIL THAT HAS 8 MEMBERS FOUR ARE PATIENTS. FOR OVER SIGHT COMMITTEE AS WELL AS STAKEHOLDER ENGAGEMENT COUNCIL WE HAVE WE DEVELOPED A MEMORANDUM OF UNDERSTANDING. MEMORANDA OF UNDERSTANDING FOR BOTH. THESE WERE DEVELOPED WITH OUR PATIENT INVESTIGATOR. SO WE HAD INPUT FROM KEY MEMBER OF OUR TEAM, WHAT SHOULD BE IN THE MOU, WHAT SHOULD IT LOOK LIKE SO WE PROVIDE THE PURPOSE OF THIS, WHAT IS THE CHARGE, THEN WE HAVE RESPONSIBILITIES. NOT JUST RESPONSIBILITIES OF THOSE ON THE COMMITTEE BUT WHAT ARE THE RESPONSIBILITIES OF THE ACADEMIC TEAM. SO THE OVERSIGHT COMMITTEE PROVIDES GUIDANCE, THEY'RE TO HELP US SOLVE PROBLEMS FOSTER COMMUNICATION, HOW OFTEN WE EXPECT THEM TO ATTEND MEETINGS AND RESPOND CORRESPOND IF THEY HAVE PRIVACY AGREEMENT TO BE INVOLVED, BUT WHAT DO WE DO? WE HAVE TO PROVIDE TRAINING AND SUPPORT. WE HAVE TO MAKE SURE THAT WE'RE GOING TO COMMUNICATE WITH THEM EFFECTIVELY. WE'RE GOING TO COMPENSATE THEM. AND WE HAVE A DOLLAR AM AND HOW OFTEN TO RE-EVALUATE THAT DOLLAR AMOUNT. WE SAY WE'RE GOING TO UPHOLD THE PRINCIPLES OF PARTNERSHIP AND COMMUNITY ENGAGEMENT SO IF YOU'RE NOT FAMILIAR, HAPPY TO SHARE THEM WITH YOU. BUT A LOT OF THEM ARE THINGS THAT YOU HEARD TODAY, TRUST, HONESTY, MUTUAL RESPECT. BUILDING TRUST, I SHOULD SAY. THOSE ARE VERY IMPORTANT IN WHATEVER PARTNERSHIP OR ENGAGEMENT YOU HAVE ESPECIALLY LONG TERM BUT WE ALSO SPECIFICALLY TALK ABOUT WE WILL MAKE SURE WE'RE PLANNING MEETINGS AT TIMES CONVENIENT FOR THEM AND IN LOCATIONS THAT ARE CONVENIENT FOR THEM. HAVING THESE WRITTEN ALSO NOT JUST EXPRESS OUR COMMITMENT TO IT, BUT MAKE IT CLEAR THAT WE THOUGHT ABOUT THIS. WE'RE NOT GOING TO SCHEDULE MEETINGS IN THE MIDDLE OF THE DAY WITHOUT ADVANCE NOTICE AND THEN WONDER WHY WE DON'T HAVE REPRESENTATION. I WILL ALSO SHARE FROM A STUDY NOT A STUDY, A SURVEY I SHOULD SAY, OF OUR PATIENT AND OUR MY HEALTH AT VANDERBILT PATIENT PORTAL. SO THIS IS DATA THAT WE SELECTED SINCE THE LAST PRECISION MEDICINE INITIATIVE WORKSHOP WHICH WAS HELD IN NASHVILLE ABOUT A MONTH AGO. SO WE'RE FINISHING FINALIZING THE QUESTIONS AND GOT IRB APPROVAL, WE ADDED TO 5,000 SURVEYS DOING AS PART OF OUR CDRN. WE WANT TO KNOW WHAT DO OUR PATIENTS UNDERSTAND KNOW ABOUT PRECISION MEDICINE AND HOW IMPORTANT ARE THESE TO THEM. WHAT HAS TO DO WITH GOVERNANCE? IF WE'RE DEVELOPING POLICIES AND PROGRAMS AROUND PRECISION MEDICINE, THEY NEED TO BE INFORMED BY PEOPLE SO LOOKING AT THE CONTINUUM IT'S NOT JUST IMPORTANT TO HAVE PEOPLE IN GOVERNANCE BUT THEY NEED INFORMATION TO ACT ON AND THINGS TO DO. SO WE'RE VERY PROUD THAT IN ABOUT A THREE WEEK PERIOD OF TIME WE'RE ABLE TO GET OVER 1200 RESPONDENTS THROUGH OUR SURVEY. THE MAJORITY OF THEM ARE WHITE WHITE OR KAYCATION. 11% AFRICAN AMERICAN, TWO 1/2% LATINO OR HISPANIC. 2% ASIAN. THIS DOES NOT REFLECT THE PATIENT POPULATION AT VANDERBILT BUT THOSE WHO USE PATIENT PORTAL, I WANT TO MAKE SURE WE'RE CLEAR THIS REFLECTS ALL OF OUR CONSTITUENTS AND IN FACT STOPPED COLLECTING DATA USING PATIENT PORTAL, ABOUT 4500 OF OUR 5 A THOUSAND AND LOOKING AT PRIORITY POPULATIONS WE'RE GOING BACK TO THE COMMUNITY TO DO MORE ON THE GROUND RECRUITMENT WHICH IS WHAT WE DID IN THE BEGINNING. IN THE COMMUNITY HEALTH CENTERS AT BARBERSHOPS, WHEREVER PEOPLE ARE IS WHERE WE GO. SO I WON'T SPEND TIME TALKING ABOUT WHAT THE GROUP LOOKS LIKE BUT ALSO HIGHLIGHT AT THE BOTTOM THERE NOT SURE THIS WAS COLLECTED IN THE STUDY THAT WAS IN THE STUDY THAT WAS CONDUCTED OR TALKED ABOUT EARLIER BUT WE COLLECT DATA ON HEALTH LITERACY, FUME NEWSPAPER O RA SAY. TWO SCALES THAT MEASURED TRUST, WILLINGNESS TO PARTICIPATE IN RESEARCH, SO WE'LL LOOK AT THE DATA WITH ALL THE LENSES. I THINK IT'S IMPORTANT FOR US TO THINK ABOUT WHAT THIS MEANS IN DIFFERENT POPULATIONS, REALIZING IT'S NOT NECESSARILY APPLICABLE TO ALL. I WILL ARE HIGHLIGHT COMPARISONS BETWEEN AFRICAN AMERICANS AN CAUCASIANS. WE ASKED TEN QUESTIONS, I'M ONLY SHOWING SEVEN BUT WE WANT TO KNOW HOW FAMILIAR PEOPLE WERE WITH THESE TERMS. GENETIC TESTING PRECISION MEDICINE PHARMACOGENOMICS. THEN WE ALSO ASKED HOW IMPORTANT ARE THESE THINGS TO YOU. SO AFRICAN AMERICANS ARE IN LIGHTER BLUISH GREEN COLOR AND CAUCASIANS ARE IN THE DARKER GREEN COLOR. SO WE DID FIND THERE ARE DIFFERENCES IN STATISTICALLY SIGNIFICANT DIFFERENCES IN AFRICAN AMERICANS HOW FAMILIAR THEY WERE, THIS IS NOT A KNOWLEDGE TEST WITH GENETIC TESTING VERSUS COMPARATIVE CAUCASIANS, AS YOU CAN SEE VERY FEW PEOPLE KNEW A LOT ABOUT PRECISION MEDICINE. SURPRISINGLY THEY SEEMED TO THINK THEY OR AT LEAST REPORT THEY'D KNEW MORE ABOUT PHARMACOGENOMICS, SURPRISING TO ME. WHEN YOU ASK ABOUT WHAT IS IMPORTANT TO THEM, IT'S IMPORTANT THE CARE IS SPECIFIC TO THEM, THEY WERE VERY INTERESTED IN MAKING SURE HEALTH INFORMATION WAS PRIVATE BUT THEY ALSO WANT TO KNOW, THEY WANT TO DECIDE WHO GETS THEIR INFORMATION AND THE WAY THE QUESTIONS WORDED I DECIDE WHICH DOCTORS AND RESEARCHERS GET MY INFORMATION. SO BEING IN CONTROL OF THEIR DATA WAS VERY IMPORTANT. I THINK IT WILL BE IMPORTANT FROM THE GOVERNANCE STANDPOINT TO MAKE SURE WE'RE USING THIS TO GUIDE WHAT WE DO. AND PERHAPS MORE EDUCATION ABOUT PRECISION MEDICINE MIGHT GET PAST BARRIERS THAT WE'LL HAVE AROUND PARTICIPATION. I THANK YOU FOR THE OPPORTUNITY. TO SHARE SOME OF THE LESSONS LEARNED. I THINK WE COVERED MOST OF THEM, I GUESS I WOULD END WITH SAYING YOUR APPROACH TO ENGAGING STAKEHOLDERS SHOULD BE DELIBERATE. THINK ABOUT HOW MANY, WHAT GROUPS YOU WANT TO REPRESENT, AND THEIR HAVE TO BE MORE THAN A FEW, THINK THE POWER DYNAMICS IN THE ROOM AT THE TABLE, YOU CANNOT FORGET ALL THIS ALSO REQUIRES TRAINING AND PREPARATION FOR THE RESEARCHERS, NOT JUST STAKEHOLDERS AND COMMUNITY MEMBERS. THANK YOU. [APPLAUSE] >> CON LOW, EQUALLY EXCITING. AS I WAS LISTENING AND I WAS REFLECTING -- DID SOMEONE LEAVE A CELL PHONE HERE? THEY SHARE AD NUMBER OF THINGS, EACH PRINCIPLED IN ITS OWN FASHION WITH ENORMOUS OVERLAP AMONG THEM IN TERMS OF AGREEMENT WHAT THE PRINCIPLES SHOULD BE. EACH EMPHASIZED ATTENTION TO CAPACITY AND INCREASING CAPACITY OF ALL PARTICIPANTS IN A VARIETY OF MATTERS. ALSO EMPHASIZE THE FACT THERE'S IMPORTANT CRITICAL ATTENTION REQUIRED TO THE PROCESS AS WELL AS THE STRUCTURE ITSELF AND MECHANISMS FOR ENACTING THOSE PRINCIPLES. AND I THOUGHT IT WAS JUST A LOVELY SERIES OF COMPLIMENTARY PRESENTATIONS HIGHLIGHTING SOME OF THE MAJOR ISSUES BEFORE US BUT MORE IMPORTANTLY NOT ONLY MAJOR ISSUES I THINK THEY GIVE A REAL NOTE OF OPTIMISM THAT THESE ARE ADDRESSABLE EVEN AT SCALE WE TALK ABOUT AT PMI. LET'S OPEN UP. WE HAVE 30 MINUTES OR QUESTIONS. PEARL PLEASE. >> THANK YOU SO MUCH. I WOULD LOVE TO HEAR FROM EACH OF YOU THE IMPORTANT OF COMMUNITY IS CLEAR. EARLY ENGAGEMENT BUT LOOKING AT A MILLION OR MAYBE MORE WITHIN THE UNITED STATES. HOW WOULD YOU DEFINE COMMUNITY HOW TO MAKE IT WORKABLE, DO WE END UP WITH STATE AND FEDERAL LEVEL THINGS AND WHAT DO YOU DO WITH PEOPLE IN MULTIPLE COMMUNITY? I'M IN A CANCER COMMUNITY, IRISH CATHOLIC COMMUNITY AND I'M ALSO IN -- YOU CAN MAKE A NUMBER OF PEOPLE BACK AND FORTH BUT HOW DO WE LOGISTICALLY GET THE INFORMATION WE NEED FROM PARTICIPANTS IN A RESPECTFUL WAY YET DOABLE WAY? >> I WILL SAY OBVIOUSLY I'M BIASED BY WHAT WE THINK OF AS OUR GUIDING PRINCIPLE AROUND THAT. YOU HAVE TO ACCEPT YOU WON'T BE ABLE TO ENGAGE EVERY COMMUNITY BECAUSE THERE ARE HUNDREDS OF THOUSANDS OF DIFFERENT COMMUNITIES. WHAT YOU CAN DO IS ENGAGE INDIVIDUALS WHO UNDERSTAND NUANCES AND SIMILARITIES BUT ALSO DIFFERENCES OF COMMUNITIES IN GENERAL. IT WILL BE A CHALLENGE TO DETERMINE WHO YOU INVITE TO THE TABLE UNTIL YOU DECIDE -- WHAT THE TABLE IS, AT THE TABLE. I WOULD ENCOURAGE YOU TO ALSO THINK ABOUT NOT NECESSARILY HAVING TO HAVE ONE OF THE THIS PERSON, ONE OF THIS GROUP, ONE OF THAT GROUP. BUT MAKING THAT AN OPPORTUNITY TO ENGAGE A BROADER GROUP. SO I TALK ABOUT THIS, SUE DID AS WELL, LARGER GROUPS OF PANELS OF PEOPLE, TO GET TO SPECIFIC INFORMATION WHEN YOU NEED IT. THAT WE CAN COMMUNIQUE SO EASILY ONLINE RAPIDLY. THAT'S MUCH EASIER TO DO THAN WOULD HAVE BEEN YEARS AGO. IF YOU'RE INVITING EXISTING COHORTS TO THE TABLE, YOU WANT TO TAP INTO THOSE -- THEIR ADVISORY GROUPS BECAUSE I'M SURE MOST IF NOT ALL OF THEM HAVE THOSE ADVISORY GROUPS, SO THINKING WHAT IN SOME WAYS STATE LEVEL AND FEDERAL LEVEL OF INVOLVEMENT LOOKS LINE. >> YOU ASKED A GOOD QUESTION, WHAT IS COMMUNITY? I THINK FROM OBSERVING THE DEVELOPMENT OF COMMUNITIES, COMMUNITY CAN BE -- I THINK THE UNDERLYING ISSUE IS THEY ALL HAVE A COMMON INTEREST AND BENEFICIAL TO ALL PARTIES. AND WHAT WE SEE IS COMMUNITY CAN BE GEOGRAPHIC. IT CAN BE SMALL, IT CAN BE RURAL, SOUTHERN NEW MEXICO BUT COMMUNITY CAN ALSO BE NATIONAL IN SCOPE. COMING TOGETHER ONE ISSUE THAT MATTERS TO THEM. COMMUNITY DOESN'T HAVE TO BE SMALL IT CAN BE HUGE. TO BUILD ON WHAT CONSUELO SAID ABOUT HOW TO DEAL WITH FACTIONS AND SEPARATE COMMUNITIES, NOT TO GO BACK TO THE MOM ISSUE BUT WE CAN TAP INTO BIG GROUPS THAT THEY WOULD WANT TO CONTRIBUTE DATA WHERE A VARIETY OF RESEARCH COULD TAKE PLACE ON THESE BIG GROUPS. SO WE CAN PRIORITIZE BIG GROUPS AN APPROACH IT THAT WAY, I THINK IT WOULD BE EFFICIENT. >> I WAS HAVING A DISCUSSION WITH SOMEONE OBJECT BUS OVER HERE -- ON THE BUS OVER HERE ABOUT COMMUNITY. FOR ME, I HAVE AN EVOLVING APPRECIATION AND DEFINITION OF COMMUNITY, COMMUNITY CAMPUS PARTNERSHIPS WE TALKED ABOUT THE GEOGRAPHIC SPACE PLACE KIND OF COMMUNITY. BUT I HAVE COME TO APPRECIATE THE IDEA OF COMMUNITY BEING PERSON LIVING WITH LUPUS. PERSONS LIVING WITH DIABETES. PROVIDING AN OPPORTUNITY, OFTENTIMES WE PROVIDED AN OPPORTUNITY TO BE ENGAGED WITH THE PROCESS. AND TWO, ALLOW PEOPLE TO SELF-SELECT. ALLOW PEOPLE THE OPPORTUNITY TO DEFINE FOR THEMSELVES WHAT THEY WANT TO BE. SO THEY MAY WANT TO IDENTIFY ONE COMMUNITY OR MAY CHOOSE TO IDENTIFY WITH ANOTHER COMMUNITY. MAY MAY CHOOSE A SUBCOMMUNITY. SO IT MAYBE LATINAS WITH BREAST CANCER, MAYBE A SUBGROUP UNDER LATINAS. SO WE HAVE TO THINK ABOUT THAT. THE THIRD POINT WOULD BE ONE SIZE DOESN'T FIT ALL. TO TRY TO FORCE PEOPLE INTO SOME COMMUNITY AGAINST PRINCIPLES WE HOLD SO NEAR AN DEAR TO US. SO ALLOWING PEOPLE TO SELF-SELECT AND PROVIDE THE OPPORTUNITY TO DO THAT. >> NEXT QUESTION. >> THIS IS A GREAT PANEL. AS SORT OF A BACKGROUND QUESTION, COULD COMMUNITY BE MULTI-FACTORIAL? FOR EXAMPLE, NEUROLOGICAL DISEASES HAVE COMMON FACTORS. I SPENT THE WEEKEND AT DR. HOROWITZ'S LIVING WELL WITH LIME WORKSHOP, OVER 200 PEOPLE DESPERATELY LOOKING FOR WAYS TO BOOST THEIR KNOWLEDGE ABOUT WHAT WORKS VARIOUS PRACTITIONERS, SAME THINGS GOING ON IN PEOPLE DEALING WITH MOLD AND MERCURY AND OTHER THINGS. AND IT'S LIKE IN MY IDEAL WORLD, THERE WOULD BE A COMING TOGETHER OF CLINICIANS, GREAT RESEARCHERS AND PATIENTS THAT SOMETIME OVERLAP. TO LOOK AT WHAT ARE CROSS CUTTING FACTORS. I KNOW THAT'S SOMEWHAT DIFFERENT FROM THE PARADIGM OF ONE THING NAME ONE DISEASE FOCUS ON ONE DISEASE AT A TIME. ARE WE THERE YET, CAN WE GET TO THE MULTI-FACTORIAL APPROACH BECAUSE OF HUMAN BEINGS WE ARE VERY MULTI-FACTORIAL? >> I THINK WE'RE CERTAINLY THERE. THERE'S NO ONE GROUP OF PEOPLE THAT IDENTIFIES WITH ONE SINGLE THING SO TO PRESUME ANY COMMUNITY IS HOMOGENOUS IN SOME WAY WOULD BE A MISTAKE ANY SPECIFIC COMMUNITY HAS ONE VOYAGE OR OPINION. IT'S VERY COMPLEX BUT ALSO AN OPPORTUNITY FOR US TO IDENTIFY WHAT THE SHARED PRINCIPLES AN VIEWS ARE. THAT WILL BE IMPORTANT AS WELL AS WE'RE LOOKING TO LINK SOME OF THESE GROUPS. WE OFTEN FOCUS HOW UNIQUE PROGRAMS OR GROUPS ARE, OTHER COMMUNITIES ARE BUT THERE'S A LOT OF OVERLAP AND SHARED PRINCIPLES. WE TALKED A FAIR AMOUNT ABOUT TRUST. I THINK IT'S AN AREA THAT WE NEED TO BETTER UNDERSTAND. THERE ARE DIFFERENT DOMAINS OF TRUST. WE TALKED -- WE'RE TALKING EQUITY IN UNDERSERVED GROUPS BUT PEOPLE WHO ARE -- HAVE BEEN MARGINALIZED OR VULNERABLE DOMAINS OF TRUST THAT ARE IMPORTANT TO THEM ARE DIFFERENT THAN IF YOU HAVE MONEY AND ACCESS. IF YOU HAVE MONEY ACCESS AND PRIVILEGE, YOU MAKE DECISIONS BASED ON LEVELS OF COMPETENCE AND WHERE PEOPLE WENT TO SCHOOL, WHERE THEY GOT THEIR DEGREES. YOU ARE ABLE TO MAKE DECISIONS ABOUT THAT. WHEN YOU DON'T HAVE THOSE ASSETS, RESOURCES AND PRIVILEGE YOU WORRY ABOUT SAFETY. AND FAIRNESS. AND YOU HAVE TO CREATE A DIFFERENT MODEL OF VALUE PROPOSITION FOR PEOPLE IF YOU WANT TO ENGAGE THEM. THAT IS ALSO COMMON AMONG MANY GROUPS THAT ARE VULNERABLE. YOU MIGHT HAVE TO TAILOR YOUR MESSAGING TO THEM OR TAYLOR YOUR APPROACH BUT IF YOU RECOGNIZE THEY NEED TO BE ENGAGED RESPECTED AND EDUCATED THOSE COMMONNALTIES CAN HELP YOU BUILD WHAT THOSE APPROACHES MIGHT BE. >> CONSUELO, I THINK AS YOU WERE TALKING I WAS THINKING ABOUT THIS ISSUE OF GENERATIONAL DIFFERENCES, THAT THERE MIGHT BE. SO WHEN WE TALK CONTEXT IN TERMS OF COMMUNITY, AND AROUND A LOT OF ISSUES, LET'S TAKE HIV AND AIDS, INDIVIDUALS IN A COMMUNITY OVER AGE 50, MYSELF AND OTHERS MIGHT FEEL A CERTAIN WAY ABOUT TALKING ABOUT THE ISSUE. BUT YOUNGER PEOPLE HAVE INHIBITIONS ABOUT TALKING ABOUT ANYTHING, I THINK SOMEONE ALLUDED TO THAT EARLIER TODAY, THEY'LL TELL YOU WHATEVER YOU WANT TO KNOW. JUST S ASK. SO I THINK THAT WE HAVE TO TAKE ALL OF THAT IN TO CONSIDERATION. SO AGAIN ACKNOWLEDGING THAT THERE MAYBE DIFFERENCES ARE IMPORTANT CONTEXT DOES MATTER. SO WHERE PEOPLE LIVE AND SHARED EXPERIENCES HAVE BEEN, I'M A SOUTHERNER AND THAT IS SOMETHING I'LL BE THE REST OF MY LIFE AND I'M VERY PROUD TO BE A SOUTHERNER BUT IT'S ALSO A BLACK SOUTHERNER. SO WHEN I THINK ABOUT THE CONTEXT WHAT'S GOING ON IN THE COUNTRY AND NOW, AROUND JUST CHARLESTON AND CONTEXT MATTER AND WHERE WE DO THIS RESEARCH AND WHO WE'RE TALKING TO AND PULLING PEOPLE TOGETHER AND LANGUAGE WE USE AND ALL THAT IS SO VERY IMPORTANT SO I WOULD SAY WE MAY WANT TO TREAD LIGHTLY AS WE THINK ABOUT THIS WORK RECOGNIZING THAT THERE ARE GOING TO BE LOTS OF NUANCES OVER TIME REGIONAL DIFFERENCES WE HAVE TO TAKE INTO CONSIDERATION. >> THOSE ARE GREAT COMMENTS, THEY REMIND ME OF THE FACT WORKING IN THE COMMUNITY TWO THINGS, I OFTEN HEAR SOMEONE SAY WELL, THE COMMUNITY, AS IF HE OR SHE REPRESENTS SINGULARLY, THE COMMUNITY NOT KNOT BEING SEDUCED TO CONCEDING THAT. SECOND THANKING EVOLUTIONARY NATURE OF COMMUNITY. THE LAST COMMENT ABOUT GENERATIONAL CONTEXT IN TERMS OF HIV UNDERSCORES THE IMPORTANCE OF ANTICIPATING THAT THE COMMUNITY CAN CHANGE OVER TIME. PARTICULARLY STUDIES 10, 20 YEARS IN DURATION. >> IT CHALLENGES ME TO THINK WHEN I WAS PRESENTING COMMUNITY REVIEW PROCESSES I THINK IT'S IMPORTANT IF WE WERE TALKING A COMMUNITY REVIEW PROCESS IN A CERTAIN COMMUNITY THAT COMMUNITY BOARD OF PROCESS CANNOT SPEAK FOR EVERYBODY IN THAT COMMUNITY, SO THEY MIGHT BE ABLE TO SPEAK TO SOME OF THE CULTURAL CONTEXTUAL ISSUES BUT FROM MAYBE NUANCES AND THERE MAYBE SOME MANY THE COMMUNITY THAT SAY THEY DON'T SPEAK FOR ME. AND MAY DECIDE THE TO GO OFF ON THEIR OWN. SO IT MIGHT MEAN WE WOULD HAVE MULTIPLE PROCESSES GOING ON AT THE SAME TIME. >> I WOULD LIKE THE TO FOLLOW-UP ON INTERESTING DISCUSSION. YOU HIGHLIGHTED THE MATTER OF TRUST IN VULNERABLE COMMUNITIES IN PARTICULAR. AND THINKING ABOUT HOW TO PROJECT THAT INTO A NATIONAL COHORT WHERE YOU'RE TALKING COMBINING DATA ACROSS THE NATION. SECONDLY, REGARDING THE ISSUE OF TRUST, ONE OF THE GOALS OF THE PMI IS ALSO TO MAKE THIS DATA AS WIDELY ACCESSIBLE AS POSSIBLE TO ALLOW PEOPLE WHO MIGHT HAVE A GREAT IDEA OF NEW WAY TO ANALYZE THE DATA ACCESS TO IT WITH THE IDEA THAT THIS SNOT GOING TO BE GOING THROUGH AN ITERATIVE PROCESS. I'M WONDERING HOW TO PROTECT INTEREST OF VULNERABLE POPULATIONS IN THIS CONTEXT. >> FIRST RECOGNIZE THERE ARE VULNERABLE POPULATIONS TO RECOGNIZE THAT PEOPLE COME TOP THE TABLE WITH DIFFERENT LIVED EXPERIENCES, AS SUCH MAY RESPOND IN DIFFERENT WAYS. SO ACKNOWLEDGING THAT, GIVING VOICE TO IT, AND NOT BEING AFRAID TO TACKLE IT HEAD ON. AND ASK DIFFICULT QUESTIONS ABOUT WHAT STANDS IN THE WAY OF PARTICIPATING IN A LARGE SCALE PROJECT. SO CONSUELO, IT WOULD BE INTERESTING TO TAKE THAT LAST PIECE OF RESEARCH THAT YOU WERE DOING OUT OF THAT SURVEY AND STRATIFY THAT BY AGE AS WELL. AND LOOK AT WHAT PEOPLE MIGHT SAY, YOUNGER PEOPLE VERSUS OLDER PEOPLE, I DON'T KNOW TODAY MAYBE OH I KNOW WHY, TODAY IS CONSUELO'S BIRTHDAY. >> I FIGURED I WOULD GET TO IT SOONER OR LATER. TELL CONSUELO HAPPY BIRTHDAY WITHIN YOU SEE HER LATER ON. SO YOU HAVE TO RECOGNIZE IT IS A BARRIER, IT IS A CHALLENGE. HIT IT HEAD ON. >> I WOULD LIKE TO ADD TO THAT IN TERMS OF TRUSTK LOOKING AT OTHER LARGE SCALE ATTEMPTS BRINGING PATIENTS INTO RESEARCH. THE LACK OF TRUST. JUST LIKE AL SAID, THE IMPORTANCE OF NUMBER ONE, BRINGING THAT COMMUNITY INTO BUILDING WHAT THEY ARE GOING TO BE DOING. LIKE BEING PART OF WHAT RESEARCH TAKES PLACE, WHAT THE GOVERNANCE OF THAT COHORT LOOKS LIKE. I BELIEVE BRINGING COMMUNITY IN FROM GROUND ZERO IS VERY IMPORTANT. ANOTHER ISSUE IN TERMS OF COMMUNITY -- ACROSS THE BOARD, VULNERABLE COMMUNITIES UNDER-REPRESENTED ALL PATIENTS LIKE AL MENTIONED OPPORTUNITY, THERE WAS RESEARCH ON WHO IN 2006 ABOUT PATIENTS WANT TO BE ENGAGED IN ASSURING BETTER OUTCOMES FOR THEMSELVES. THE NUMBER ONE ANSWER IS THEY WANTED AN INVITATION. SO WE HAVE FAILED OR WE CAN DO BETTER HERE IN OUR COUNTRY IN TERMS OF RESEARCH BY ISSUING HONEST INVITATION AND DIALOGUE ABOUT BIG BENEFITS SOME OF THE BEST WAYS TO IGNITE OUR COMMUNITY IS BY SHOWING THE BENEFITS OF RESEARCH TO THEIR COMMUNITY, WHAT'S HAPPENED IN THE PAST. >> WHEN THINK ABOUT PCORI, PATIENT CENTERED SEEMS LIKEOXI MORON TO ME. LIKE DUH THAT'S WHAT WE SHOULD BE DOING. WE HAVE TO CONVINCE PEOPLE WE'RE SERIOUS ABOUT THIS, WE REALLY WANT TO KNOW WHAT YOU'RE THINKING AND REALLY DO WANT TO ENGAGE YOU. AND ONE STRATEGY I HAVE BEEN PART OF IS MY FAMILY PARTICIPATED IN SEVERAL RESEARCH PROJECTS IN OUR FAMILY REUNION. I SERVED AS A SPOKES PERSON FOR THAT RESEARCH, I VETTED THAT RESEARCH, MY SISTER AND I AND WE TALKED TO FAMILY MEMBERS ABOUT IT, WE TALKED ABOUT THE COLLECTION OF TISSUE, HOW IMPORTANT IT IS MAKING A CONTRIBUTION SO I FELT THAT WAS AN HONEST EFFORT MADE BY RESEARCHER TO REACH OUT TO ME T HELP SHEPHERD THAT WORK WITHIN MY FAMILY, CONSUELO. >> MY SENSE JUST TO INTERJECT HERE, PEOPLE WILL BE VERY FOR GIVING OF IMPERFECT PROCESS, THEY WILL NOT BE FOR GIVING OF ABSENT PROCESS. >> I WOULD ADD TO THAT POINT, WE HAVE TO REMEMBER AL'S PRESENTATION ABOUT COMMUNITY. COMMUNITY IS DIFFERENT THAN PARTICIPANT. AS WE'RE THINKING WHAT THIS LOOKS LIKE ENGAGING A PARTICIPANT IN INDIVIDUAL PERSON OR GROUP OF PARTICIPANTS WHO HAVE SIMILAR CHARACTERISTICS IS NOT THE SAME THING AS ENGAGING COMMUNITY. WE WILL HAVE TO DO BOTH. WHEN WE DESIGN A STUDY OR PROGRAM TO ALLOW PEOPLE TO HAVE ACCESS TO DATA THERE MAYBE CERTAIN THINGS WE WILL NOT LET THEM HAVE ACCESS TO. IT MIGHT BE IMPORTANT FOR NATIVE PEOPLE TO SAY I DON'T WANT MY INFORMATION TO GO OUT WITH IDENTIFICATION WITH MY DEMOGRAPHIC INFORMATION, RACE OR ETHNICITY IDENTIFIED. THAT MIGHT BE HARD TO SAY NO TO BUT WE DO KNOW FROM THE RECENT PAST THAT THERE HAVE BEEN COMMUNITIES HAVE BEEN MARGINALIZED AND CHALLENGES BECAUSE OF THAT F. WE HAVE TO RESPECT THAT. NOT EVERYONE WHO WANTS TO DO WORK WITH THE DATA OR WITH THIS RESOURCE RESPECT THE LABELS THE SOCIAL CONSTRUCTS ON, ON THE GENOMIC DATA TO MAKE CONCLUSIONS SO THEY MIGHT BE ERRONEOUS SO THERE MAY NEED TO BE A PROCESS, A COMMUNITY LEVEL REVIEW FOR SOME OF THE REQUESTS. >> (INAUDIBLE) ONC. MY QUESTIONS ARE TURNING FROM THE PHILOSOPHICAL TO PRACTICAL, ONE THING I WOULD BE INTERESTED IN HEARING ABOUT EACH OF YOUR EXPERIENCES HOW DO YOU TRANSLATE GOVERNANCE CONSENSUS YOU BUILT INTO ACTUAL WAYS PEOPLE USE, TOUCH, DISCLOSE, ET CETERA, THE DATA, IF YOU HAVE GOTTEN THAT FAR AND IF YOU HAVE, THINK HEIGHTED BY MODEL PMI IS PROPOSING. >> I WOULD WELCOME WE HAVE PPRNs IN THE ROOM THAT YOU MIGHT BE ABLE TO GIVE REALLY DETAILED RESPONSE TO THAT HOW YOU ARE REALLY FORMULATING POLICIES THAT DEFINE WHAT DATA CAN BE USED, WHEN IT CAN BE USED WHEN IT CAN'T BE USED, PRIVACY POLLSIS YOU WANT, NOT PUTTING YOU ON THE SPOT BUT I THINK YOU HAVE GOT THE TRUE EXPERIENCE AT YOUR FINGERTIPS OF OPERATIONALIZING YOUR GOVERNANCE IN TERMS OF REALLY HOW DATA IS USE AND HOW POLICIES ARE CREATED TO GOVERN THAT. >> IN THE INTEREST OF TIME JUST ONE OF YOU COULD. >> I'M SPEAKING THE NEXT PANEL SO MEGHAN WHEREVER YOU ARE DO YOU WANT -- (OFF MIC) >> WE'RE BOTH ON THE NEXT PANEL, STAY TUNED. >> SO THAT'S A DEFERRAL, RIGHT? IN THE FAR CORNER. >> HI, I'M ALLISON FROM ACADEMY HEALTH THANKS SO MUCH FOR THE GREAT SESSION. I WAS REALLY INTRIGUED BY THE MODELS THAT YOU PRESENTED AND ECHOING SOME OF THE SENTIMENTS THIS MORNING ABOUT EARLY AND OFTEN ENGAGEMENT OF PATIENTS AND CONSUMERS AND WONDERING IF YOU CAN SPEAK ABOUT HOW THAT APPLIED IN DETERMINEING WHAT DATA ARE CAPTURED IN YOUR SYSTEMS SO IT'S ONE THING FOR PEOPLE TO SAY I WANT YOU TO RESEARCH THIS QUESTION. BUT IF THE DATA ACTUALLY AREN'T BUILT INTO THE INFRASTRUCTURE TO ADDRESS THAT RESEARCH QUESTION WONDERING IF YOU HAVE HAD TO GO BACK AND RECONSIDER BASED ON THOSE REQUESTS. >> I WOULD SAY IT'S CERTAINLY A NEWER PROCESS FOR US TO ELICIT QUESTIONS FROM OUR PATIENTS AND PARTICIPANTS, A BIGGER QUESTION WE ELICIT QUESTIONS WE HAVE TO FIND RESEARCHERS WHO ARE INTERESTED WILLING TO TRY AND ANSWER THOSE QUESTIONS SO WE TRIED TO ACTUALLY DO THAT IN A WAY WE'RE ASKING FOR THEM TO PRIORITIZE TOPIC AREAS. SO THAT HAS FOR US HAS GONE TO WHAT OUR RFA LOOKS LIKE FOR IMMUNITY ENGAGEMENT RESEARCH PROGRAMS SO MAYBE NOT A SPECIFIC STUDY DETHE SIGNED WITH PATIENT OR COMMUNITY MEMBER BUT THOSE ARE TOPICS IDENTIFIED GUIDE WHAT OUR RFA MIGHT LOOK LIKE. I WOULD ALSO SAY WE HAVE OVER THE LAST YEAR OR SO LOOKED AT SOME OF OUR APPROACHES TO SPECIFICALLY TRY TO UNDERSTAND HOW HAS THE RESEARCH CHANGED DUE TO STAKEHOLDER ENGAGEMENT, NOT NECESSARILY JUST AT THE GOVERNANCE LEVEL BUT WHAT SPECIFICALLY CAN WE DO, CAN WE PINPOINT THAT CHANGED. SO A LOT HAS BEEN AROUND RECRUITMENT, INCREASING RECRUITMENT, WHERE WE RECRUIT, HOW WE RECRUIT, BUT ALSO DESIGNING THE TOOLS, WE SPECIFICALLY HAVE BEEN USING A PROCESS THAT SOME YOU ARE FAMILIAR WITH COMMUNITY ENGAGEMENT STUDIOS WHERE WE MIGHT GO THROUGH A SURVEY, QUESTION BY QUESTION WITH A GROUP OF POTENTIAL PARTICIPANTS OR FROM THAT PARTICIPANT BACKGROUND TO SAY WHAT MAKES SENSE, WHAT DOESN'T. AND THAT MIGHT CHANGE NUMBER OF QUESTIONS, SOMETIMES DOWN, SOMETIMES IT GOES UP, IF YOU CAN ME THIS QUESTION THIS IS RELEVANT AND I SHOULD BE ASKING ABOUT MY PAIN AND I DON'T THINK DOCTOR'S NOTE WILL BE RIGHT SO YOU WANT TO ASK ME INSTEAD OF TRYING TO GET THAT INFORMATION FROM THE ELECTRONIC HEALTH RECORD. ASK THIS QUESTION FIRST. I'M OFFENDED WHEN YOU HAVE THE OPTION FOR DEMOGRAPHICS AS A DOMESTIC PARTNER. ASK THAT IN A CONCERN WAY. >> I CAN ADDRESS THAT FROM ALMOST THE PPRN POINT OF VIEW T PATIENT POWERED RESEARCH NETWORKS ARE TIPPING THE MODEL ON ITS HEAD. AND ACTUALLY PCORI WE SEE OUTSIDE THE PPRN BUT THIS FEE NO, MA'AM NONWHERE THE SHIFT IS MOVING AND NOW WE HAVE ISSUED FUNDING ANNOUNCEMENTS AND WE SEE PATIENT GROUPS TWEETING. SAYING WE HAVE GOT DATA. YOU OUR TABLE AND WE HAVE GOT RESEARCH QUESTIONS WE WANT TO COME INTO OUR WORLD AND DO WHAT WE SAY, IT'S FASCINATING TO WATCH THIS SHIFT AND SHARON AND MEGHAN WILL TALK ABOUT THIS. WHEN I WAS A PATIENT PARTNER 15 YEARS AGO WE HAD 17 PARTNERS AT THE TABLE, INCLUDING PROFESSIONAL SOCIETIES, NIH WAS THERE, HRSA WAS THERE AND THE PATIENT THEY WANTED -- THEREFORE OVERARCHING REQUEST TO DO A DIFFERENT RESEARCH QUESTION, THE MOTHER GROUP THAT WAS GOVERNING BODY WOULDN'T BUDGE SO DELAYED BY 18 MONTHS. THE IT WAS DELIBERATION, IT WAS VERY THOUGHTFUL WE LOOKED AT ALAINS SO SOMETIMES THAT WILL BE A CHALLENGE IN RESEARCH WHEN RESEARCH QUESTION COMES IN NOT OF INTEREST TO THE COMMUNITY WITH THE DATA. AND THAT'S SOMETHING THE GOVERNANCE HAS TO WORK OUT AND WHY M,U AND OTHER MECHANISMS AND THE COLLABORATIVE SPIRIT. WANTING THE THE BETTER OUTCOME FOR THE COMMUNITY HELPED WHEN WE HAD A DIFFERENT RESEARCH QUESTION IN MIND. THANK YOU. >> THIS MAYBE GOOD FOR THE NEXT TO LAST QUESTION. >> I HAVE TWO DISCONNECTED THOUGHT BUS WILL SHARE THEM AND YOU CAN REACT OR NOT IF YOU WISH. THE FIRST IS IN THE WAKE OF HEALTHCARE.GOV WHEN WE HAVE BEEN REALLY LOOKING AT HOW GOVERNMENT PUTS FORWARD GOOD TECHNOLOGY THAT WORKS FOR PEOPLE, ONE WAY WE FOUND WE WERE NOT TRUSTWORTHY IS NOT PROVIDING SERVICES USER FRIENDLY. SO DIDN'T HAVE TO DO WITH ARE THINGS PROTECTED, DO WE HAVE GOOD POLICIES BUT RATHER SOMETHING THAT WORKS FOR MY LIFE SO HAVING A PARTICIPATION MODEL THAT SMARTLY DESIGNED, THAT INVOLVE MY FEEDBACK. SO FIRST QUESTION, TO WHAT EXTENT IS TRUST ALSO BASED ON YOUR MAKING THIS USEFUL FOR ME, MAKING EASY FOR ME, FRICTIONLESS FOR MAINE AND I TRUST YOU BECAUSE I CAN SEE THAT YOU'RE DOING THAT FOR ME. THE SECOND AT THIS CONNECTED THOUGHT IS ONE THING AS I COME IN THROUGH A PATIENT COMMUNITY, ANOTHER THING TO COME IN THROUGH A DELIVERY SYSTEM BUT IF WE ENVISION A DIRECT PARTICIPANT OPTION WHERE I COME IN ON MY OWN, PEOPLE HAVE TRUST IN PEOPLE, THEY DON'T HAVE TRUST EVEN IF ORGANIZATION IT'S BECAUSE THEY KNOW SOMEBODY AND I'M TRYING TO FIGURE DO WHICH HAVE TO CULTIVATE A RELATIONSHIP? HAVE TO HAVE SOMEBODY THERE EMISSARY TO THAT PERSON, WHAT ARE THE WAYS SOMEONE IS COMING IN DIRECTLY, CREATE A FEELING OF TRUST FOR THEM EVEN IF THEY DON'T WANT TO BE PART OF GOVERNANCE BOARD. SO THOSE ARE MY -- FEEL FREE TO RESPOND IF YOU WOULD LIKE. >> I WOULD SAY AROUND TRUST, THERE ARE MULTIPLE DOMAINS OR CONTENT AREAS RELATED TO TRUST. EVERY INDIVIDUAL HAS A TRUST SYSTEM. SOME HAVE TRUST IN ABSTRACT CONSTRUCT OF AN ORGANIZATION NOT NECESSARILY A PERSON. THERE WILL BE PEOPLE THAT YOU CAN TWEET, YOU CAN POST INFORMATION AND THEY WILL DIAL N LOG IN AND UP LOAD DATA WITH LITTLE EFFORT. BUT YOU HAVE TO WILL B TO UP FRONT INVEST IN OPPORTUNITIES THAT WILL ALLOW PEOPLE WHO HAVE VARYING LEVELS OF TRUST BUT ALSO HAVE DIFFERENT DOMAINS OF TRUST MORE IMPORTANT TO THEM. AGAIN, GETTING BACK TO COMMUNITIES THAT PEOPLE WHO ARE VULNERABLE SAFETY, FAIRNESS. THEY WANT TO KNOW, I THINK THAT WAS -- ONE OF THE QUESTIONS ONE THING MS. BRENT SAID EARLIER TODAY ABOUT RANDOMIZATION. THAT'S AN HONEST THING. PEOPLE DON'T TRUST THAT THEY WILL BE TREATED FAIRLY, WILL THEY -- WILL MINORITIES BE MORE LIKELY TO GET PLACEBO OR TOXIC TREATMENT. THIS MIGHT NOT BE -- MIGHT SEEM FROM SCIENTIFIC PERSPECTIVE, WE DON'T NEED TO TALK ABOUT RANDOMIZATION BECAUSE THAT'S THE GOLD STANDARD. THE ACTUALITY IS IF WE DON'T TALK ABOUT IF WE DON'T HAVE THOUGHTFUL CONVERSATION HOW TO EDUCATE AND PUT SYSTEMS IN PLACE TO MAKE PEOPLE MORE TRUSTING, THEN WE WON'T GET TO THOSE POINTS DOING THAT WORK. >> YOUR QUESTION ABOUT TECHNOLOGY MAKING THINGS EASIER. I AGREE WITH YOU, I THINK THIS IMPORTANT. WE HAVE MISSED SOME OF THESE MAYBE EASY PIECE -- I DON'T SAY EASY BUT PIECES THAT I THINK OF RESEARCH THAT PCORI FUNDED THAT REQUIRED THE PARTICIPANTS TO USE THE LAPTOP TO ENTER SOME INFORMATION AND IT WAS A LATINA COMMUNITY THAT CAME BACK TO THE PI AND SAID DON'T THINK. SO WE DON'T HAVE LAB TEST BUS I HAVE A CELL PHONE. AND SO THEY CHANGE THE WAY THEY COMMUNICATED AND IT INCREASED THE PARTICIPATION. SO THAT MESSAGE -- AS HUMAN BEINGS WE TRUST OTHERS LIKE US. SO IF WE GET SOME KIND OF SOMETHING THAT DOESN'T FIT OUR CULTURE OR OUR OR WHAT WE THINK, THINK THEY DON'T UNDERSTAND US. SO BY CHANGING MAYBE SOME RELATIVELY -- I DON'T WANT TO SAY EASY AGAIN BUT THINGS MITISESSING TO MAKE THINGS EASIER THAT WOULD INCREASE TRUST. >> IRONIC TO TALK PERSONALIZED MEDICINE BUT NOT PERSONALIZED RESEARCH. >> VERY LAST WORD. >> THANKS. SO QUICK QUESTION BEFORE I WORKED AT DUKE I USED TO DO OUTREACH WITH CHILDREN HOMELESS OUT ON THE STREET EVERY NIGHT BUILDING RELATIONSHIPS. AFTER THIS WITH PMI WE HAD OUR WORKSHOPS OUR TWEET CHATS, THE WHITE HOUSE DONE STAKEHOLDER ENGAGEMENT SESSIONS, WE ENGAGED WITH YOU. HOW DO WE BUILD OUT ON A CONSENT TRACHE CIRCUMSTANCE? HOW DO WE GO OUT INTO THE COMMUNITY AND WHAT ARE THE PLUG IN NETWORKS YOU GUYS THINK WE SHOULD ATTACK NEXT AND TAKE PMI TO THE STREET? >> I THINK A GOOD PLACE TO START IS AROUND DISSEMINATION OF THE INFORMATION. AND PUBLIC PLACES. WHAT THAT WILL LOOK LIKE IS ENGAGING A NUMBER OF OUTLETS WHERE PEOPLE GET INFORMATION. THAT MIGHT BE KNEWS SO I WOULD SAY THE BLACK NEWSPAPER ASSOCIATION, HAVING INFORMATION DISSEMINATED THROUGH HISPANIC NEWSPAPER GROUPS NATIONAL MEDICAL ASSOCIATION. OTHER GROUPS THAT HAVE DEEP CONNECTIONS AND CERTAIN COMMUNITIES IS IMPORTANT. I WOULD BUILD ON WHAT YOU SAID, ENGAGE EARLY AND OFTEN WHAT YOU SAID IS LIKE ENGAGE NOW, ENGAGE MORE. KEEP INFORMATION GOING. AND I THINK WHAT YOU ALSO HAVE TO THEN IS THINK HOW TO PERSONALIZE IT INFORMATION SO CAN YOU HIGHLIGHT STORIES ABOUT INDIVIDUALS PARTICIPATING IN THE PMI PROJECT? NOT JUST A GREAT PROJECT BUT AL RICHMOND WHO LOOKS LIKE ME OR CONSUELO RODRIGUEZ WHO LOOKS AND TALKS LIKE ME, WHATEVER, ALL THOSE WILL TAKES TO A PLACE WE HAVE NEVER BEEN AND WE HAVE TO CHANGE LANGUAGE SO NOT WRITING FOR PEER REVIEW JOURNALS. WE ARE WRITING FOR THE PEOPLE WE WANT TO BE PART OF THE PROJECT. MAKE IT PLAIN SPEAK AND ENGAGE PEOPLE AND SHARING. WE SNEAD TO GET ON URBAN RADIO STATIONS. WE NEED TO GET ON SPANISH SPEAKING RADIO STATIONS. WE NEED TO TRY AS MANY OPPORTUNITIES AND OUTLETS ADS POSSIBLE TO GET THE WORD OUT THERE ABOUT THIS. >> CONSUELO. >> DIRECTLY RELEVANT TO THAT POINT. >> I MISSED THIS QUESTION SO MY FAULT. BLAME ME. THIS IS THE LAST QUESTION. >> IT'S REALLY JUST GOING TO THE ISSUE OF TRUST AND COMMUNICATING YOU SAID YOU'RE FROM THE SOUTH I'M AT THE CANCER CERTAINTY: WE GO STRAIGHT TO BLACK CHURCHES AND FIND PEOPLE WHO ARE -- WE KNOW WE WON'T WALK INTO A COMMUNITY NECESSARILY AND BUILD IMMEDIATE TRUST SO ONE COMMUNITY IS MY RELIGIOUS COMMUNITY IN THE SOUTH EASTERN UNITED STATES, WHERE VULNERABLE POP HAGUES ARE RESIDING, THAT IS GENERALLY TRUSTED INSTITUTION. SO SAME NEWSPAPER IS GREAT BUT IF YOU DON'T READ THE NEWSPAPER, DON'T LISTEN TO THE RADIO YOU WON'T GET CONNECTED. IF YOU'RE IN PLACES NOT JUST CHURCH, THERE ARE A NUMBER OF INSTITUTIONS WITH TRUSTED LEADERS. AND THEY HAVE TO BE ENGAGED AND BE THE ROLE MODEL. THE ADVOCATE FOR PARTICIPATION. I WANT TO MAKE A SHORT POINT. PEOPLE COME FROM MULTIPLE COMMUNITIES, ALL OF US ARE IN MULL IT WILL COMMUNITIES -- MULTIPLE COMMUNITIES. IF THEY'RE ON AN ADVISORY BOARD IS IT CLEAR THROUGH MOU PROCESS OR SOMETHING, WHAT COMMUNITY THEY'RE REPRESENTING BECAUSE THOSE COMMUNITIES MAYBE IN CONFLICT THAT THEY BELONG TO. IF THEY'RE GOING TO REPRESENT A GROUP IT HAS TO BE CLEAR WHAT THAT GROUP OR GROUPS ARE. >> LAST RESPONSE FROM THE PARABLE PANEL. >> THE WORK GROUP HAS TO MAKE DECISIONS QUICKLY. YOU NEED TO BE INCOLLUSIVE, YOU NEED TO IDENTIFY OPPORTUNITIES. MY SUGGESTION WOULD BE THAT YOUR DELIBERATE STRATEGIC APPROACH INCLUDE A PLAN TO ENGAGE PEOPLE TO HELP YOU UNDERSTAND WHICH GROUPS YOU WANT. ONCE YOU IDENTIFY PRIORITY POPULATION YOU IDENTIFY GROUPS OF PEOPLE, THOSE CONNECTIONS THAT YOU HAVE. AND THEN PUT TOGETHER A PLANNING PROCESS HOW YOU'LL ENGAGE THEM. SO THE LOW HANGING FRUIT ARE PEOPLE WHO WILL EASILY RESPOND AND COHORT THAT ALREADY EXIST BUT THEN YOU HAVE SOME TIME BUILT IN TO DEVELOP A PLAN THAT WILL BE DELIBERATE SO BEFORE THERE ARE PARTICIPANTS, THEY ARE ADVISORS SO WHO TO BRING TO THE TABLE TO DEVELOP THE STRATEGY TO REACH THOSE PEOPLE. >> JOIN ME IN THANKING THE PANELISTS. [APPLAUSE] >> WE NOW HAVE A BREAK. IS IT FAIR TO SAY IT'S 15 MINUTES TO 3:20? >> NO, YOU GET A TEN MINUTE BREAK. SORRY. >> I TRIED. >> THIS PANEL TODAY IS WHAT WOULD YOU EXPECT A DIRECT FROM PARTICIPANT COHORT MODEL TO LOOK LIKE. I'M KATHY GIUSTI, THE EXECUTIVE CHAIRMAN OF THE MULTIPLE MYROW MA RESEARCH FOUNDATION AND MULTIPLE MYELOMA PATIENT. I'M INCREDIBLY PROUD TO BE MODERATING THIS PANEL OF NO SHRINKING VIOLETS CAN I SAY. I CAN PROMISE YOU THIS WILL BE A VERY LIVELY, LIVELY PANEL. THE REASON I'M HAPPY TO BE WITH THIS GROUP IS BECAUSE THESE ARE AMAZING, AMAZING WOMEN WHO HAVE BUILT THEIR OWN ORGANIZATIONS AND DATA SETS AND THEY HAVE SHOWN YOU TRULY CAN BUILD TRUST IN THE MANY, MANY PEOPLE THAT THEY'RE WORKING WITH SOY THINK THEY'RE ABLE TO SHARE A TREMENDOUS NUMBER OF INSIGHTS WITH US HOW YOU BUILD TRUST WITH YOUR PARTICIPANTS AND HOW YOU BUILD DATA SETS AND HOW THE DATA SETS AND KNOWLEDGE MIGHT BE UTILIZED SO I WOULD LIKE TO TO INTRODUCE THE PANEL. DR. SUSAN LOVE CHIEF VISIONARY OFFICER TO DR. SUSAN LOVE RESEARCH FOUNDATION. MEGHAN O'BOYLE, PRINCIPLE INVESTIGATOR FOR THE PHELAN MCDERMID SYNDROME DATA NETWORK AND PATIENT ADVOCATE FOR HER DAUGHTER SHANNON. SALLY OKUN, VICE PRESIDENT FOR ADVOCACY AND POLICY AND PATIENT SAFETY AT PATIENTS LIKE ME AND SHARON TERRY, CEO OF GENETIC ALLIANCE. SO THE WAY WE'RE GOING TO START THIS PANEL IS I'M GOING TO ASK EACH OF THESE LADIES TO PROVIDE US WITH AN OVERVIEW OF THEIR OWN ORGANIZATION, DATA SET THEY CREATED WHY DID THEY CREATE THAT DATA SET, WHAT QUESTION WERE THEY TRYING TO ANSWER. AND IF THEY HAD IT TO DO OVER WHAT ONE THING THEY WOULD DO DIFFERENTLY. I'LL START WITH SUZANNE LOVE. WELL, WE STARTED A WHILE AGO AND I CAN'T REMEMBER WHEN BUT IT WAS A LONG TIME AGO. WE STARTED BECAUSE I WAS FRUSTRATED THERE WAS NOT ENOUGH DONE ON WOMEN AND IT WAS ALL DONE ON MICE AN RATS. WHEN I COMPLAINED TO SCIENTISTS ABOUT THIS, THEY SAID TO ME WE DON'T KNOW HOW TO FIND WOMEN. I SAID WELL I DO. WE STARTED THE ARMY OF WOMEN AND WE ACTUALLY, I WENT ON, WE GOT SOME FUNDING FROM AVON AND WE WENT ON GOOD MORNING AMERICA MIGHT HAVE BEEN TODAY'S SHOW, I CAN'T REMEMBER WHICH ONE, BUT WITHIN A WEEK WE HAD 300,000 PEOPLE SIGNED UP WOMEN WERE EAGER TO BE PART OF RESEARCH AND WE NOW HAVE ABOUT 380,000 STILL IN THE ARMY OF WOMEN. OVER THE YEARS WE HAVE DONE 86,000 WOMEN HAVE BEEN IN STUDIES AND WE HAVE DONE OVER CLOSE TO 100 STUDIES. WHAT THE ARMY OF WOMEN IS, IT'S A BIG EMAIL LIST. WITH WE DON'T COLLECT ANY DATA, SCIENTISTS COME TO US WITH STUDIES IF THEY WANT TO RECRUIT FROM US WE HAVE A SCIENTIFIC ADVISERY BOARD, HALF ADVOCATES HALF RESEARCHERS, IF IT'S BEEN PEER REVIEWED WE REVIEW IT FOR WHETHER IT'S APPLICABLE FOR ARMY OF WOMEN AND WE E BLAST IT TO EVERYBODY IN THE ARMY AND WE HAVE PEOPLE WITH AND WITHOUT BREAST CANCER IN THE ARMY OF WOMEN. THE REASON WE PUT IT OUT TO EVERYBODY IS WHAT WE FOUND IS THEY THEN VIRALLY SEND IT ON. AND SO YOUR SISTER LIVES IN ILLINOIS AND HE W HAD A STUDY NOT AS DIVERSE AS WE WOULD LIKE AND HAD A STUDY FOR VIETNAMESE PEOPLE IN NORTHERN CALIFORNIA, WE THOUGHT WE WOULD NEVER GET THIS, WE HAD THAT ONE FULLY ENROLLED IN A DAY BECAUSE WE HAD THE RIGHT VIETNAMESE PERSON IN ARMY OF WOMEN. WE DON'T NEED TO HAVE EVERYBODY IN YOUR COHORT TO -- YOU NEED THE RIGHT PEOPLE TO DO IT. THE ADVANTAGE IS SENDING TO EVERYBODY, AT LEAST THEY KNOW THEY'RE A STUDY. IF YOU KEEP A EVENTUAL INDUSTRY AND YOUR DATA THEN YOU HAVE A MATCH AND IF IT CHANGES THEY GET PREGNANT, NOT PREGNANT, THEY GOT BREAST CANCER YOU HAVE TO KEEP IT UP TO DATE. THIS WAY WE ONLY KEEP THE EMAIL UP TO DATE. THAT WORKS VERY WELL. TO RESPONSE TO THE FACT WE DIDN'T HAVE ENOUGH STUDIES, WE STARTED THE HEALTH H OF WOMEN STUDY WITH caBIG WHICH SOME OF YOU WILL REMEMBER. A WHILE AGO. THE HEALTH OF WOMEN STUDY HAD OVER 50,000 WOMEN, WHO FILL OUT QUESTIONNAIRES ON A PERIODIC BASIS, WE HAVE TEN DATA SETS NOW HEALTH, ENVIRONMENTAL QUALITY OF LIFE AND COLLATERAL DAMAGE, AND OTHER ISSUES AND PUT OUT SERIAL QUESTIONNAIRES AND COLLECT DATA, WE'RE HAVING SOME STRUGGLES IT STRUGGLES IN TERMS OF CLEANING AND STUDYING IT BUT WIDOW HAVE AN ON GOING COHORT OF PEOPLE WHO WILL FILL OUT QUESTIONNAIRES FOR US. WHAT WE HAVE LEARN FROM ALL THIS ARE COUPLE OF THINGS. YOU DON'T NEED EVERYBODY, IF YOU HAVE THE KEY PEOPLE YOU CAN ACTUALLY GET THINGS OUTS THERE WITHOUT NECESSARILY HAVING SIGNED UP EVERYTHING IN THE COMMUNITY, YOU NEED THE RIGHT PEOPLE, BEFORE EVERYBODY ELSE; WE L FELT THERE WAS RISK OF COLLECTING SAMPLES SO WE DON'T HAVE ANY SAMPLES AND THE RISK IS YOU COLLECT WITH THE TECHNOLOGY OF TODAY AND THEN IF IT DOESN'T WORK FOR THE STUDY TOMORROW SO YOU COLLECT IT IN CELL LINE AND IT TURNS OUT HAD TO BE COLLECTED COLLECTED IN ALCOHOL TO BE OF USE FOR ANY KIND OF ANALYSIS SO I WORRY ABOUT THESE BANKS THAT WE'RE COLLECTING THEM WITH WHAT WE THINK IS GOING TO BE THE TECHNOLOGY THAT MAY OR MAY NOT BE VALUABLE FIVE OR TEN YEARS WHEN WE GO TO USE THEM SO SOMETHING TO KEEP IN MIND T. OTHER IS NOT ENOUGH RESEARCH TO KEEP EVERYBODY BUSY. AND SO I WORRY WE'LL BUILD A COHORT AND NOBODY WILL COME. SO YOU HAVE TO MAKE SURE THAT SOME IS RESEARCH INCENTIVES IN OUR ACADEMIC COMMUNITY ARE TO DO A STUDY GET IT DONE PUBLISH IT, GET A GRANT, FASTER TO DO THAT WITH ANIMALS. WHEN YOU'RE DOING RESEARCH WITH PEOPLE THE IF YOU HAVE GOT THE COHORT EXISTING IT TAKES LONGER AS WE HEARD, MORE INVOLVED, YOU HAVE TO GET COMMUNITY BUY IN. SO I WORRY WE WILL BUILD IT AND WON'T REALLY USE TO IT THE DEGREE OR HAVE THE DESIRE TO USE IT AS WE THINK WE WILL. FINALLY, HOW TO RECRUIT, I SAID THIS LAST WEEK IN BOSTON, THINK YOU GO ON THE MEDIA AND YOU CAN RECRUIT QUICKLY AND YOU GO TO WOMEN, WOMEN CONTROL THEIR KIDS, THEY CONTROL -- TAKE CARE OF PARENTSES, TAKE CARE OF SPOUSES HEALTH SO IF YOU CAN RECRUIT WOMEN YOU GET THE WHOLE FAMILY. YOU CAN THEN RECRUIT FOR STUDIES AUTO THE DIFFERENT LEVELS. >> I'M MEGAN O'BOYLE WITH THE PHELAN MCDERMID SYNDROME FOUNDATION AND MORE IMPORTANTLY SHANNON'S MOM. THIS IS A DIFFERENT MODEL BUT WHAT WORKFORCE OUR COMMUNITY WHICH IS VERY SMALL, IT'S CONSIDERED A VERY RARE OR ULTRA RARE SYNDROME. IT'S GENETIC DELETION CAUSE MORE COMMENTS -- COMMON CONDITIONS SUCH AS INTELLECTUAL DISABILITIES AUTISM AND EPILEPSY. BUT IT'S IN TERMS OF DIAGNOSES ACROSS THE WORLD, WE'RE AT 1300 PATIENTS AROUND THE WORLD. IF THERE'S MORE GENETIC TESTING DONE WE WOULD BE IN TENS OF THOUSANDS SO THIS IS A VERY DIFFERENT MODEL OF BREAST CANCER, IT'S A SMALL RARE COMMUNITY. BECAUSE GENETIC TESTING MAKING HEADWAY IN THE LAST TEN YEARS, IT WAS NOT EASY TO DETECT 20 YEARS AGO SO MOST POPULATION IS PEDIATRIC. WHO ELSE IS DESPERATE FOR A TREATMENT FOR SOMETHING BUT A PARENT OF A SICK CHILD NON-VERBAL AND HAS SOMETHING SO RARE NO DOCTORS KNOW ANYTHING ABOUT IT. SO CONSEQUENTLY, WE HAVE FABULOUS PARENTS START A FOUNDATION, I WAS NOT ONE OF THEM. FIVE YEARS AGO A MAGNIFICENT GNAT PARENT CONTACT MED AND TOLD ME TO START A REGISTRY AND I DIDN'T KNOW WHAT THAT WAS. FIVE YEARS LATER WE HAVE A REGISTRY WITH 65% OF THE WORLD POPULATION REGISTERED. WE COLLECT GENETIC REPORTS AND A LOT OF OTHER THINGS. WE DECIDED THAT WASN'T ENOUGH SO WE HAVE A BIOSAMPLE COLLECTION WITH IPS CELLS. WE FIGURED WE SHOULD KEEP MOVING SO WE HAD RESEARCH COMMUNITY APPLY FOR GRANTS FOR A RARE DISEASE CLINICAL RESEARCH CONSORTIUM. SO IN A SHORT PERIOD OF TIME WE HAVE COME A LONG WAY, BECAUSE OF THE PASSION AND THE COOPERATION OF OUR FAMILIES. WHO WANT TO BE PART OF RESEARCH WHO ARE NOT CONCERNED WITH PRIVACY SECURITY AND HIPAA AS SOME PATIENT GROUPS. BOTH GROUPS NEED TO BE RESPECTED. THOSE WHO LIKE TO OPENLY GIVE AND GIVE A LOT AND OFTEN, AND DON'T WANT TO SLOW DOWN RESEARCH BY MUTING WHAT THEY HAVE AND RESPECT FOR THOSE MORE CONCERNED WITH PRIVACY AND WE NEED TO MAKE SURE WE PROTECT THAT. SO WE ARE A FOUNDATION WHO WAS BUILT UPON SUPPORT, WE ARE CORRECTING A LOT OF DATA, WE ARE ESTABLISHED OUR OWN GOVERNANCE WITHIN OUR REGISTRY AND WE ARE PART OF PCORNET AND FAMILIES HAVE A SAY WHO SEES THE DATA AND 10000 WHAT CAN BE DONE WITH THE DATA. 1000IT'S IMPORTANT. 10002 WE HAVE TO EDUCATE FAMILIES 10003 ABOUT WHAT RESEARCH COULD DO 10004 WITH DATA. 10005 THEY ONLY KNEW WHAT THEIR OWN 10006 CHILD HAD. 10007 THE LAST SESSION WAS VERY 10008 IMPORTANT. 10009 GOVERNANCE IS NOT EASY BUT IT'S 10010 IMPORTANT AND YOU CAN'T THINK 1001ABOUT IT AFTER THE FACT. 10012 I WOULD SAY IN TERMS OF KATHY 10013 YOUR QUESTIONS WERE BARRIERS IS 10014 ACCESS TO GETTING MEDICAL 10015 RECORDS FOR OUR FAMILIES THEY 10016 NEED THEM FOR NOT JUST RESEARCH 10017 BUT MANAGE THEIR CHILDREN'S 10018 HEALTH. 10019 WHAT WE DO GOING FORWARD IS I 10020 WAS WARNED ABOUT THIS, WE ASK A 1002LOT OF QUESTIONS, THAT CAN BE A 10022 BURDEN, IF THERE'S A BURDEN ON 10023 PATIENT OR CAREGIVER YOU MAY NOT 10024 HAVE LONG TERM BIAS. 10025 -- BUY IN. 10026 SO WE HAVE TO FIND WAYS OF 10027 MAKING THIS DIGESTIBLE. 10028 SO YOU COLLECT IMPORTANT 10029 INFORMATION BUT NOT TOO MUCH 10030 THAT'S NOT IMPORTANT. 1003BECAUSE THEY WON'T COME BACK. 10032 >> THANK YOU SO MUCH. 10033 FIRST I WANT TO SAY THAT I WAS 10034 NOT ONE FOUNDER OF PATIENTS LIKE 10035 ME BUT I HAVE BEEN THERE OVER 10036 SEVEN YEARS SO I THINK IT HAS 10037 LONG TERM TRACK RECORD BUT IN 10038 2004 WHEN PATIENTS LIKE ME WAS 10039 DEVELOPED, THERE WERE A FEW 10040 GOALS IN MIND, ONE WAS TO INVENT 1004AN OPEN AND TRANSPARENT PATIENT 10042 FIRST HEALTH RELATED RESEARCH 10043 BASED SOCIAL NETWORK. 10044 SO THAT'S THE BIG MOUTHFUL. 10045 BUT IT WAS REALLY SOMETHING 10046 QUITE DIFFERENT AND DISRUPTIVE 10047 HOW PATIENTS THEMSELVES COULD BE 10048 A PARTICIPANT IN SOMETHING THAT 10049 WAS REALLY OUT OF THE BOX AND 10050 OUT OF THE TRADITIONAL MODEL. 1005WE WANT TO DEMONSTRATE PATIENTS 10052 CAN AND SHOULD BE DRIVERS OF 10053 HEALTH, CARE AND RESEARCH. 10054 WE ULTIMATELY WANT TO BRING 10055 CREDIBILITY AND VALUE OF REAL 10056 WORLD PATIENT GENERATED DATA TO 10057 RESEARCH AND CARE DELIVERY AND 10058 TO USE THAT DATA TO UNDERSTAND 10059 THE MEANING OF HEALTH DEFINED BY 10060 REAL PEOPLE. 1006SO I THINK WHERE WE HAVE COME 10062 SINCE THEN IN TEN YEARS WE HAVE 10063 BEEN DOING THIS, WE DELIVER WELL 10064 ON THOSE GOALS AND CONTINUE TO 10065 IDENTIFY NEW ONES OVER TIME, WE 10066 ONE SUCCEEDED IN DRIVING PATIENT 10067 FIRST IN CARE RESEARCH AND 10068 CURRENTLY HAVE 350,000 MEMBERS 10069 PROVIDING DATA ON 2500 DIFFERENT 10070 CONDITIONS SO WE HAVE THE 1007BENEFIT OF THAT CROSS 10072 POLLINATION BEING TALKED ABOUT 10073 EARLIER. 10074 WE CURRENTLY HAVE OVER 10075 25 MILLION STRUCTURED DATA POINT 10076 IN THE SYSTEM AND I CAN'T TELL 10077 YOU HOW MANY PAGES OF FREE TEXT 10078 NARRATIVE CONVERSATION WE HAVE 10079 AS WELL. 10080 WE HAVE SUCCEEDED ON INVENTING 1008WHAT WE BELIEVE IS NOVEL AND AT 10082 TIMES DARE I SAY DISRUPTIVE 10083 HEALTH RELATED SOCIAL RESEARCH 10084 NETWORK AND I BELIEVE WE PAVED 10085 THE WAY FOR OTHERS WHO ARE 10086 FOLLOWING THAT PATH AND WE'RE 10087 PROUD OF THAT. 10088 WE ESTABLISHED PATIENT GENERATED 10089 HEALTH DATA INDEED CREDIBLE. 10090 IT HAS REAL VALUE AND ACTUALLY I 1009DARE TO SAY IT MAYBE THE GROUND 10092 FRUIT MITISESSENING BIG DATA. 10093 SO WHERE ARE SOME OF OUR 10094 CHALLENGES HAVE BEEN ON 10095 SCALABILITY AND INTEGRATION, 10096 WITH THE TRADITIONAL HEALTHCARE 10097 ECOSYSTEM. 10098 WE BELIEVE INTENTIONAL 10099 COLLABORATIONS ARE NEEDED IN 10100 PART OF PMI AS AN OPPORTUNITY 1010FOR THAT, TRADITIONAL CARE AND 10102 RESEARCH COLLEAGUES CAN WORK 10103 WITH NON-TRADITIONAL LIKE 10104 OURSELVES AND EMERGENCE OF MORE 10105 DIVERSE HEALTH ECOSYSTEM THAT 10106 ACTUALLY MOVES ALONG 10107 COMPLIMENTARY BUT PARALLEL 10108 PATHS. 10109 YOU DON'T NEED THE SAME PATH ALL 10110 THE TIME, WE CAN BE DOING 1011DIFFERENT THINGS TO ANSWER 10112 DIFFERENT QUESTIONS. 10113 ULTIMATELY WHEN I ASK JAMIE AND 10114 BEN THE HAYWARD BROTHERS WHO 10115 FOUNDED PATIENTS LIKE ME, WHAT 10116 WOULD YOU CHANGE IF YOU START 10117 PATIENTS LIKE ME TODAY? 10118 JAMIE'S FIRST RESPONSE YOU HAVE 10119 CAN'T KNOW WHAT YOU COULDN'T 10120 HAVE KNOWN. 1012IS TO SO TECHNOLOGY ENVIRONMENT 10122 EMERGED HAVE CHANGED 10123 DRAMATICALLY IN TEN YEARS. 10124 THAT SAID, THIS IS A LONG TERM 10125 OPPORTUNITY TO THINK HARD WHERE 10126 WE ARE IN SOME TIME FRAME 10127 CAREGIVERS AND FAMILY MEMBER AN 10128 PEOPLE WITH WERE ENGAGING IN 10129 ANSWERING AND DEFINEING WHAT THE 10130 QUESTIONS WERE. 1013SO ESSENTIALLY OUR MODEL MIRRORS 10132 IN 2004 TO GENERATE MEANINGFUL 10133 INSIGHT AND ANSWERS TO QUESTIONS 10134 THAT MATTERED TO PATIENTS. 10135 WHAT WE RECOGNIZE HOW FAR, 10136 SOMETHING THAT'S A CHALLENGE WE 10137 PROBABLY TWEAKED DIFFERENTLY WAS 10138 THAT WE MAY HAVE FOCUSED TOO 10139 MUCH ON THE RESEARCH SIDE OF OUR 10140 MODEL FRANKEDLY AND WHILE THAT 1014HAS GIVEN US NEEDED LEGITIMATE 10142 SAY AND TRAY TRACTED FUNDING 10143 OPPORTUNITIES WE WOULDN'T HAVE 10144 HAD, WE FEEL IT DID DISTRACT 10145 SOME FROM ADDRESSING THE REAL 10146 PROBLEMS AN QUESTIONS PATIENTS 10147 NEED ANSWERED IN ORDER TO MANAGE 10148 THROUGH REAL LIVES EVERY DAY. 10149 AND INTEGRATE THAT INTO POINT OF 10150 CARE. 1015SO WE'RE INTENTIONALLY DOING 10152 THAT NOW, THAT'S A SHIFT WE 10153 STARTED TO THINK MORE ABOUT CARE 10154 AND THE POINT OF CARE AND HOW 10155 THAT CAN BE IMPROVED WITH 10156 PATIENT GENERATED DATA. 10157 OUR NEXT GENERATION PLATFORM 10158 WILL CAPTURE AND MEASURE LIVING 10159 WITH CHRONIC ILLNESS ENSURING 10160 THE ECOSYSTEM. 1016IT'S THE DIFFERENCE I THINK 10162 JAMIE AND I TALKED ABOUT THIS 10163 YESTERDAY, THE DIFFERENCE 10164 BETWEEN A LOW RESOLUTION 10165 ASSESSMENT OF BLACK AND WHITE 10166 DATA, AND ADD TECH ANY COLOR TO 10167 THAT DATA. 10168 THE NUANCE AND CONTEXT OF HUMAN 10169 CONDITIONS WITHOUT WHICH 10170 RESEARCH WOULD FALL FLAT SO WE 1017FEEL THE PATIENTS LIKE ME MODEL 10172 BRINGS THAT NUANCE, THAT 10173 CONTEXT, THAT RICHNESS THAT WE 10174 REALLY NEED TO GET IN A MODEL 10175 LIKE PMI WITHOUT FALLING PREY TO 10176 BE FOCUSED ON WAYS WE HAVE DONE 10177 RESEARCH. 10178 SO THANK YOU. 10179 >> I WANT TO ANSWER WITH THREE 10180 PATHS IN THREE MINUTES SINCE 1018THAT'S THE REQUIREMENT. 10182 WITH MY PXE HAT, I'M A MOM WITH 10183 KIDS WITH (INDISCERNIBLE) WITH 10184 MY GENETIC ALLIANCE HAT WHICH IS 10185 SHEPHERDING ABOUT 1200 DISEASE 10186 GROUPS AND PCOR NET PATIENT 10187 POWERED RESEARCH NETWORK SO WE 10188 BUILD OUR FIRST REGISTRY IN 10189 1995, AND THE REASONS WE BUILT 10190 IT WE NEEDED TO GROW UP RESEARCH 1019OUT OF THE COMMUNITY BECAUSE NO 10192 ONE WAS INTERESTED. 10193 WE ESSENTIALLY WANTED TO COLLECT 10194 BIOLOGICAL INFORMATION WITH 10195 PHENOTYPIC INFORMATION AND DID 10196 THAT OUT OF THE GATE, MY KIDS 10197 CAN TELL YOU THE ICE CREAM IN 10198 THE FREEZER. 10199 WE WANTED TO FIND PHENOTYPIC 10200 CHARACTERISTICS THAT YOU 1020WOULDN'T TYPICALLY FIND IN A 10202 SEVEN MINUTE CLINIC VISIT OR 10203 MEDICAL RECORD OR 4% PEOPLE 10204 ENROLLED IN CLINICAL TRIALS. 10205 WE WANTED TO HERD THE CALF SO WE 10206 LEARNED QUICKLY THAT THERE 10207 WASN'T SHARING GOING ON AND WE 10208 UNDERSTAND IF WE OWN THE FOOD WE 10209 CAN MOVE THE FOOD AND CATS WOULD 10210 FOLLOW T RESEARCHERS WE WANTED 1021TO GET TO SHARE. 10212 SO WE REQUIRE SHARING. 10213 WE ALSO WANT TO LOOK AT CROSS 10214 CONDITION CROSS PATHWAY, CROSS 10215 DISEASE ISSUES LIFESTYLE ISSUES, 10216 ET CETERA. 10217 SO WE HAD TO BUILD THE SYSTEM TO 10218 DO THAT. 10219 THE GOAL DELIVERS ON TO SOME 10220 DEGREE. 1022THAT WE HAD TRADITIONAL RESULTS 10222 SO I PRETENDED I WAS RESEARCHER 10223 AND MORE BROADLY IN THE YEARS 10224 SINCE THEN WHEN WE UP SCALED ALL 10225 OF THAT, AND ESSENTIALLY CREATED 10226 CROSS CONDITION RESEARCH 10227 COMMUNITIES AN REGISTRIES WE 10228 WERE ABLE TO MOVE THE ADVOCACY 10229 COMMUNITY FROM BEING GATE 10230 KEEPERS WHICH VERY MUCH IN SOME 1023WAYS MIMICKED WHAT WE SAW IN THE 10232 ACADEMIC LABS, I'LL DECIDE WHO 10233 WILL USE THE DATA TO GIVING THAT 10234 CONTROL TO THE INDIVIDUALS AND 10235 EVEN MY LANGUAGE REALLY WRONG, 10236 THEY'RE GIVING IT, NO REALLY 10237 ENABLING THE RECLAMATION, 10238 RECLAIMING OF THE RIGHT TO 10239 CONTROL WHERE MY DATA WILL GO 10240 AND HOW TO DYNAMICALLY MANAGE 1024THAT, INDIVIDUALS HAVE 10242 AFFINITIES, WE'RE LOOKING AT HOW 10243 YOU BE WHO YOU ARE AND HOW YOU 10244 HAVE THE CONDITIONS YOU HAVE AND 10245 HOW TO MANAGE THAT. 10246 THE OTHER THING THAT'S 10247 IMPORTANT, READY COHORT SO WE 10248 WANTED PRECISION SO I WANT 10249 GUIDES THAT LOOK LIKE ME THAT 10250 SPEAK LIKE ME TO MAKE DECISIONS 1025DYNAMIC AND GRANULAR ENGAGEMENT, 10252 GAMIFICATION FOR IMMEDIATE 10253 RESULTS STANDARDS AND CONNECTION 10254 TO DATA MODELS. 10255 AND THEN MOST RECENTLY WE NOW 10256 ACCEPT DIRECT THANKS FOR 10257 NATIONAL ASSOCIATION FOR TRUSTED 10258 EXCHANGE. 10259 WHAT WOULD I HAVE DONE 10260 DIFFERENTLY? 1026IT'S HARD TO PROJECT WHAT WOULD 10262 HAVE COME. 10263 I THINK I WOULD HAVE BEEN BOLDER 10264 SOONER AND WORRIED LESS ABOUT 10265 BEING RESPECTED AND WELCOMED TO 10266 THE COMMUNITY. 10267 SO I WOULD HAVE RISKED MORE AND 10268 DONE MORE FEARLESS. 10269 THANK YOU. 10270 >> WELL DONE, WELL SAID. 1027I THINK WHAT WE JUST GOT FROM 10272 THAT WAS THAT -- THIS IS 10273 CONSISTENT WHAT WE HEARD, PEOPLE 10274 REALLY DO WANT TO PARTICIPATE IN 10275 RESEARCH PATIENTS ESPECIALLY 10276 WANT TO PARTICIPATE, SO DO 10277 FAMILIES. 10278 WE HAVE A BIAS THAT MOMS TEND TO 10279 BE DOMINANT IN THE HEALTHCARE 10280 SIDE, THAT DOESN'T MEAN THAT MEN 1028IN ANY WAY SHOULD BE EXCLUDED 10282 FROM THIS. 10283 YOU HAVE HEARD THE THIRD PARTIES 10284 ARE GOOD ENGAGING THE PEOPLE AND 10285 HAVE BUILT MAJOR DATABASES, WHEN 10286 YOU TALK 350,000 PEOPLE, SOME OF 10287 OUR DATABASES GO DEEP WITH 10288 GENOMIC SEQUENCING AND SOME 10289 BROADER WHERE IT'S AN EMAIL 10290 SYSTEM, BUT BOTH ARE QUITE 1029EFFECTIVE. 10292 AND SIMPLER IS BETTER. 10293 HAVING GONE THROUGH WHAT WE HAVE 10294 LEARNED FROM THE NUMBER OF 10295 GROUPS OUT THERE GENERATING DATA 10296 SETS, I ASKED THE TOUGHER 10297 QUESTION, THE ELEPHANT IN THE 10298 ROOM WHICH IS I FIND ON THE 10299 WORKING GROUP WE HAVE A VISION 10300 OF WHAT THIS 1 MILLION PATIENT 1030COHORT LOOKS LIKE. 10302 AND YET WHEN I ACTUALLY ASK 10303 PEOPLE ON THE BREAK WHAT THEIR 10304 VISION OF THE THIS COHORT LOOKS 10305 LIKE, IT DOESN'T LOOK ANYTHING 10306 LIKE MY VISION. 10307 IT DOESN'T LOOK LIKE THE NEXT 10308 PERSON'S VISION. 10309 SO I THOUGHT WHY NOT GET 10310 ELEPHANT OUT OF THE ROOM AND I'M 1031GOING TO ASK A FEW BRILLIANT 10312 WOMEN TO RESPOND TO WHAT THEY 10313 ACTUALLY THINK THIS COHORT LOOKS 10314 LIKE. 10315 THEN TALK ABOUT THAT FRAMEWORK. 10316 WHO WANTS TO GO FIRST? 10317 >> THIS IS FUN BECAUSE WE'RE IN 10318 THE CREATIVE STAGES. 10319 SO I THINK THE DIRECT TO 10320 PARTICIPANT COMMUNITY, COHORT, 1032THAT'S WHAT WE HAVE BEEN ASKED 10322 TO REFLECT MAYBE GET RID OF THE 10323 COHORT. 10324 THE WORD IS WEIRD FOR THIS STUFF 10325 BUT I THINK WE WANT TO IDENTIFY 10326 COMMUNITIES WITH STRONG 10327 COMMUNITY ENGAGEMENT SO THAT'S 10328 DIFFERENT THAN WHAT WE HAVE BEEN 10329 SAYING AALL ALONG HOW SHOULD IT 10330 BE RARE OR COMMON DISEASE, 1033SHOULD IT BE THIS PEOPLE OR THAT 10332 KIND OF PEOPLE, I THINK FOR THE 10333 FIRST THING WE LOOK FOR IS 10334 STRONG COMMUNITY ENGAGEMENT AND 10335 I WOULD DEFINITELY AGREE WITH 10336 WHAT WE HAVE HEARD, CHURCHES, 10337 DAY CARE, BASEBALL TEAMS SERVICE 10338 DELIVERY SITES AND GROW UP 10339 RESEARCH EFFORTS IN THAT 10340 COMMUNITY. 1034THAT MIGHT SOUND LIKE WE'RE 10342 TALKING 25 YEARS FROM NOW BUT I 10343 THINK WE WANT THE TO BROADEN OUR 10344 DEFINITION OF RESEARCHER. 10345 WE HAVE SEEN ENOUGH EXAMPLES OF 10346 RESEARCHERS WHO DON'T HAVE 10347 CREDENTIALS. 10348 WE WANT TO ALSO CASCADE FROM 10349 INTERESTED FRIENDS AND RELATIVES 10350 CONNECTING THE DOTS BECAUSE I 1035THINK WE KEEP SAYING WE NEED TO 10352 EDGE CASE. 10353 EDUCATION IS BORING IN THE SENSE 10354 THAT IT'S HARD TO DO IF PEOPLE 10355 ARE NOT INTERESTED, WE HAVE WAY 10356 TOO MUCH NOISE IN OUR LIVES TO 10357 WANT TO LEARN ANYTHING NEW 10358 UNLESS WE FEEL COMPELLED TO 10359 LEARN IT SO AGAIN, LIKE NOBODY 10360 PAYS ME TO USE FACEBOOK, WE NEED 1036TO FIND CONULE PELLING REASONS, 10362 THAT'S FRIENDS AND RELATIVES. 10363 I THINK WE WANT TO CHILL ON 10364 RIGOROUS INCLUSION CRITERIA. 10365 I THINK WHAT I MEAN BY THAT IS I 10366 THINK IT'S BEEN REALLY HARD FOR 10367 LOTS OF STUDIES TO ENROLL 10368 BECAUSE THEY REQUIRE STRICT 10369 KINDS OF INCLUSION CRITERIA, 10370 THIS TIME WE GET A CHANCE TO BE 1037BROADER AND MORE INVITING. 10372 THE OTHER THING THAT'S REALLY 10373 IMPORTANT IS TO ENGAGE FIRST AND 10374 BREAK DOWN CULTURAL BARRIERS 10375 BUILT IN THE BIOMEDICAL RESEARCH 10376 SYSTEM AND SOME OF THAT IS GOING 10377 TO BE HAVING WHATEVER THIS IS BE 10378 BOUNDARYLESS. 10379 THAT DOESN'T MAKE A LOT OF SENSE 10380 BECAUSE WE'RE TRYING TO DEFINE A 1038MILLION, BUT DEFINE ANYTIME A 10382 BAY THAT ALL PEOPLE WHO WANT THE 10383 TO COME CAN COME AND ALL 10384 NETWORKS THAT EXIST CAN JOIN AND 10385 BE PART OF THIS ENDEAVOR. 10386 THAT BOUNDARYLESS WILL BUILD THE 10387 CULTURE CHANGE CHAI THAT IS THE 10388 GREATEST RESULT OF SOMETHING 10389 LIKE THIS. 10390 >> SO I WOULD TOTALLY AGREE AND 1039I THINK I TAKE IT EVEN FURTHER. 10392 I THINK THE OTHER THING ABOUT 10393 ANYBODY CAN COME AND NOT HAVING 10394 VERY STRICT CRITERIA IS IT 10395 CHANGES. 10396 SO TODAY YOU MAY NOT HAVE BREAST 10397 CANCER AND NEXT WEEK YOU GET 10398 MAMMOGRAM AND NOW YOU'RE A 10399 BREAST CANCER PATIENT. 10400 OR YOUR KID IS BORN AND HAS A 1040PROBLEM. 10402 SO LIFE IS KEEPS CHANGING AND WE 10403 DON'T FIT INTO LITTLE BOXES, AT 10404 ALL TIMES IN OUR LIVES. 10405 ALSO I THINK WE NEED TO MAKE IT 10406 SO THAT ANYBODY WITH A GOOD 10407 RESEARCH IDEA CAN DO IT SO IT'S 10408 NOT JUST CREDENTIALED 10409 RESEARCHERS BUT MAYBE THERE'S A 10410 WAY TO PARTNER WITH SOMEBODY WHO 1041CAN HELP YOU BUT ALLOW BECAUSE 10412 THE GOOD IDEAS SOMETIMES DON'T 10413 COME FROM THE RESEARCH 10414 COMMUNITY. 10415 WHO ARE SO HIGH BOUND IN THE WAY 10416 WE THOUGHT ABOUT THINGS. 10417 REALLY COME FROM THE PEOPLE IN 10418 THE COMMUNITY. 10419 I TOTALLY I THINK THE MORE OPEN 10420 WE CAN MAKE IT THE BETTER. 1042AND PEOPLE CAN GO AND LOOK ON 10422 THE HAVE DATA THE OPEN SO YOU 10423 CAN LOOK TO SEE HOW MANY HAD 10424 GALLBLADDER DISEASE ON THURSDAY 10425 ALSO GOT BREAST CANCER SATURDAY. 10426 TAKE A LOOK AT IT AND THAT GETS 10427 PEOPLE MORE ENGAGED IN RESEARCH 10428 EVEN THEY'RE NOT DOING AN ACTUAL 10429 STUDY. 10430 SO WE REALLY HAVE TO BUILD UP 1043THE RESEARCH LITERACY OF THE 10432 COUNTRY AND TO DO THAT, THE MORE 10433 WE CAN LET THEM PLAY AND BE PART 10434 OF IT AND SEE HOW IT WORKS, THE 10435 BETTER THAT'S GOING TO GO. 10436 >> COULDN'T AGREE MORE WITH MY 10437 COLLEAGUES AND ECHO THE NOTION 10438 OF GETTING RID OF THE WORD 10439 COHORT RIGHT AWAY AND FOCUSING 10440 ON COMMUNITY. 1044WE LEARNED EARLY ON WHEN 10442 PATIENTS SET UP WE WERE 10443 COMMUNITIES WITH INDIVIDUAL 10444 CONDITIONS AND BY 2011 IT WAS 10445 OBVIOUS TO US THAT WAS NOT THE 10446 RIGHT DESIGN. 10447 WE TOOK THE WALLS DOWN BUT I 10448 HAVE TO TELL YOU IT TOOK MONTHS 10449 THE TO DO IT. 10450 IN TERMS OF INFRASTRUCTURE AND 1045THEN TWO MONTHS TO DARKEN THE 10452 COMMUNITY FOR NO NEW MEMBERS SO 10453 THE EXISTING MEMBERS CAN 10454 RESPECTFULLY UNDERSTAND WHAT IT 10455 WOULD BE LIKE TO NOW HAVE THE 10456 WALLS DOWN. 10457 SPAY RESPECTED US -- THEY 10458 RESPECTED US BY BEING ABLE TO 10459 SAY THANK YOU FIRST OF ALL, 10460 ARCLS PATIENT TALKS WITH HIV 1046PATIENT, ET CETERA. 10462 BUT I THINK THAT THE ABILITY TO 10463 DO THAT INSIGHTS PAYING FOR 10464 PATIENTS THEMSELVES WHO TRY TO 10465 HACK THE SYSTEM TO TELL US ABOUT 10466 THE DIABETES WHEN THEY WERE 10467 THERE IN MS IMMUNITY AND IT 10468 WASN'T WORKING. 10469 COMMUNITY SO LISTENING TO THAT 10470 AND PAYING ATTENTION TO THAT WAS 1047REALLY IMPORTANT. 10472 THE OTHER THING, COUPLE OF 10473 THINGS TO REINFORCE IS I THINK 10474 WE NEED TO STEPHMd+ 10475 TEST TEST TEST TEST TEST TEST 10476 TEST TEST TEST TEST TEST TEST 10477 TEST TEST TEST TEST TEST TEST 10478 TEST TEST TEST TEST TEST TEST 10479 TEST ABOUT SOME OF THE WAYS WE 10480 DO THINGS AND THEN ALSO FOR OUR 1048PARTICIPANTS TO BE ABLE TO 10482 IDENTIFY IN THAT STATUS WAY. 10483 >> SO WE WOULD DO ALL THREE. 10484 AND THE REASON WE TWO THAT IS 10485 BECAUSE IT SORT OF BUILT INTO 10486 THE PLATFORM FOR ENGAGING 10487 EVERYONE RESPONSIBLY ALREADY 10488 THIS WAY SO GUYS ARE LOCAL, THEY 10489 BELONG TO COMMUNITIES THEY GIVE 10490 THEIR IMPRESSION ABOUT BEING 1049INVOLVED IN RESEARCH AT LARGE. 10492 THE INDIVIDUALS HAVE ALREADY 10493 MADE DECISIONS ABOUT 95% 10494 INDICATED A WILLINGNESS TO 10495 PARTICIPATE IN RESEARCH ALL THE 10496 WAY TO BIG DATABASES AND 10497 INVOLVEMENT IN PROJECTS LIKE 10498 THIS AND THERE'S ALSO A METHOD 10499 OF CONTACTING THEM SO THE 10500 INFORMATION PART OF IT DATA 1050COULD FLOW. 10502 AND IT WOULD FLOW EVEN SOMETIMES 10503 WITH CONTACT INFORMATION BECAUSE 10504 LARGE NUMBER, 85% HAVE SAID 10505 CONTACT ME BECAUSE THEY WANT TO 10506 BE INVOLVED IN RESEARCH. 10507 SO WE WOULD DO ALL THREE OF 10508 THOSE. 10509 THEN I THINK PUTTING MY PCORNET 10510 HAT ON THIS IS THE THING PCORNET 1051IS BEING BUILT FOR AND ENGAGING 10512 TENS OF MILLIONS OF LIVES IN 10513 PCORNET IN VARIOUS WAYS. 10514 WHEN PEOPLE SEE SOMETHING IN 10515 FRONT THAT THEY CAN MEANINGLY 10516 CONNECT TO THEY ENROLL AND 10517 DECIDE TO PARTICIPATE. 10518 I ALSO DIRECT THE PARTICIPANT 10519 BECAUSE THAT'S WHERE WE LOOK 10520 HERE IS NOT JUST RELY ON THE 1052SOMEWHAT NON-TRADITIONAL 10522 STRUCTURES WE BUILT, MY REGISTRY 10523 IS 20 YEARS OLD RUN BY A LAY 10524 PERSON COMPLETELY, THAT'S OLD. 10525 THAT'S OLD MODEL. 10526 SO WE WANT TO LOOK AT WHAT 10527 HAPPENED -- WHAT WOULD HAPPEN IF 10528 WE PARTNER WITH MOTOR VEHICLES? 10529 AND THAT IT WAS PART OF THE 10530 REGISTRATION FOR YOUR LICENSE OR 1053NOT, THERE MAYBE BIGGER LINES, 10532 YES. 10533 THEY DON'T -- DON'T RAIN ON MY 10534 PARADE. 10535 IF WE PARTNER WITH CELL PHONE 10536 PROVIDERS, WE LOVE TO USE 10537 GROCERY STORE LOYAL THETY CARDS 10538 LIKE KELLY EDWARDS AND I TALKED 10539 ABOUT YESTERDAY BECAUSE WE 10540 GET $2 OFF ON SOMETHING. 1054WHAT IF THERE WAS SOMETHING 10542 CONNECTED TO OUR WALK IN CLINIC 10543 OUR PHARMACY. 10544 SO I THINK WE WANT TO THINK 10545 BIGGER THAN OUR WALL AND 10546 SEMIWALL AND BOUNDARYLESS 10547 COMMUNITIES TO THE BIGGER WORLD 10548 AROUND US. 10549 >> EXACTLY. 10550 NOW IT'S TIME TO OPEN UP TO 1055QUESTIONS. 10552 SO THE MIC. 10553 >> I'LL TAKE THE OPPORTUNITY 10554 WHILE WAITING FOR OUR MIC PEOPLE 10555 TO GET UP NCI AND CIRCULATE THE 10556 MIC -- GET UP AND CIRCULATE THE 10557 MIC. 10558 THANK YOU. 10559 SO THIS IS THE PARADIGM SHIFT 10560 SOME OF THE MOST ESTEEMED 1056RESEARCHERS IN OUR COUNTRY ARE 10562 WALKING AROUND WITH MICS AND 10563 HAVE BEEN CONFUSED WITH HELP. 10564 , SHARON I WANT TO ASK YOU A 10565 QUESTION. 10566 WE TALK ABOUT US AND THEM AND 10567 HOW TO END THAT AND WE WERE 10568 TALKING HOW TO BE SUCCESSFUL ON 10569 YOUR KEY TO SUCCESS LOOKING MORE 10570 LIKE RESEARCHER AND DOING THINGS 1057IN A RECOGNIZED SPACE. 10572 SO WE SEE THE COMMUNITY OVER 10573 HERE INTO REGISTRIES MORE LIKE 10574 RESEARCHERS, WHAT CAN THEY DO 10575 MORE TO MOVE CLOSER TO THE 10576 PATIENT GROUP AND WHERE DO WE 10577 LAND AND GET TO THE WE? 10578 >> GREAT QUESTION. 10579 AND AS SUSAN SAID, NONE OF US 10580 ARE TWEETING NOW, WHAT'S 1058HAPPENING TO THE TWITTERS HERE. 10582 THIS IS EXACTLY THE 10583 CONVERSATION. 10584 SO I THINK -- WHAT'S STRIKING TO 10585 ME I HAVE BEEN DOING THIS MORE 10586 AND MORE, LISTENING TO LANGUAGE 10587 IN THESE ROOMS SO I JUST CAME 10588 FROM PRECISION MEDICINE 10589 INITIATIVE IN CALIFORNIA, WHICH 10590 THEY HAVE TO HAVE THEIR OWN AND 1059FROM BIG DATA -- AND FROM BIG 10592 DATA CONFERENCES AND ALL KINDS 10593 OF OTHER THINGS. 10594 WHEN I LISTEN TO THE LANGUAGE I 10595 FIND THE RESEARCHERS, AND I SAY 10596 US BECAUSE I WANT TO USE WE 10597 LANGUAGE SAYING LET'S LET THEM, 10598 BUILD A BRIDGE TO THEM, LET'S DO 10599 THAT FOR THEM. 10600 AND I THINK IF WE START WITH OUR 1060LANGUAGE, SO START WITH WHEN 10602 WORDS COME OUT OF MY MOUTH, WHY 10603 AM I SAYING THERE, OVER THERE 10604 AND I'M HERE DOING THIS WORK AND 10605 HOW CAN THE RESEARCHER WHICH IS 10606 PART OF US AND THE PATIENT COME 10607 BACK TOGETHER AND THE OTHER PART 10608 IS SUE PREMIUMLY PERSONAL AND 10609 VERY GOOD FRIEND OF MINE, DIANE 10610 BAKER ONCE SAID TO ME I HAD 1061REALLY PERFECTED THE RESEARCHER 10612 THING AND GIVING GREAT TALKS 10613 THAT ARE FABULOUS BUT NEGLECTED 10614 TO LET MYSELF BE THERE ANY MORE 10615 BECAUSE I HAD TO BE 10616 PROFESSIONAL. 10617 IF EACH CAN RELEASE THAT WHERE 10618 YOU'RE CONCERNED WITH YOUR 10619 MOTHER RIGHT NOW, AND REALLY 10620 CONCERNED ABOUT YOUR KID RIGHT 1062NOW AND LET THAT COME THROUGH, 10622 WE'LL STOP SAYING THEM AND START 10623 BEING US. 10624 >> THE ONLY DIFFERENCE BETWEEN 10625 RESEARCHER AND PATIENT IS 10626 DIAGNOSIS. 10627 AND I SAID THIS A COUPLE OF 10628 THREE YEARS AGO AND DIAGNOSED 10629 WITH LEUKEMIA. 10630 SO THE IDEA THAT IT IS WE AND 1063THEM, OUR RESEARCH HAS WE AND 10632 THEM BECAUSE WE DON'T WANT TO BE 10633 THE PATIENT. 10634 IN ACTUAL FACT WE'RE ALL 10635 PATIENTS. 10636 SO IT'S A FALSE DICHOTOMY, WE DO 10637 IT MORE BECAUSE WE LIKE NOT TO 10638 BE THE SICK PERSON BUT WE REALLY 10639 NEED TO CONSIDER IT PEOPLE. 10640 I SAID THIS THE OTHER DAY, IN 1064SURGERY WE CONSIDER EVERYBODY 10642 PREOP. 10643 >> TO RIGHT. 10644 >> MY NAME IS AARON MA HONE, MBA 10645 SUMMER INTERN AT PPD WORKING IN 10646 THE CORPORATE DEVELOPMENT AND 10647 STRATEGY GROUP. 10648 I HAVE BEEN WAITING FOR THE TIME 10649 TO ASK THIS QUESTION, MIGHT NOT 10650 BE THE TIME BUT I'M JUST GOING 1065TO ASK IT. 10652 IT SEEMS MOST STAKEHOLDERS AND 10653 FOCUS IN THIS ROOM IS ON 10654 CLINICAL TRIALS THAT HAVE -- 10655 TRYING TO MAKE ADVANCES IN 10656 RESEARCH AND ACADEMIA. 10657 AND DRAWING STATISTICALLY 10658 SIGNIFICANT CONCLUSIONS. 10659 MY QUESTION IS HOW IS THE 10660 APPROACH TO ENGAGING 1066PARTICIPANTS GOING TO SHIFT FOR 10662 CLINICAL TRIALS MORE TO CUTSED 10663 ON DRUG DEVELOPMENT AND WHEN YOU 10664 RUN THESE CLINICAL TRIALS 10665 FOCUSES MORE ON GETTING PATIENTS 10666 WHO MEET INCLUSION EXCLUSION 10667 CRITERIA, RATHER THAN MAKING 10668 SURE YOU HAVE SPECIFIC SET OF 10669 SOCIO ECONOMIC BACKGROUND 10670 GENETIC MAKE UP AND BIOMARKERS 1067SO THE'S A BIT OF A DIFFERENT 10672 FOCUS SO HOW DO YOU TRANSLATE 10673 TRYING TO DO WITH RESEARCH TO 10674 DEVELOPING NEW DRUGS? 10675 >> IS THE GOAL TO DEVELOP NEW 10676 DRUGS? 10677 PARTLY BUT I DON'T SEE THAT IS 10678 THE GOAL OF I SEE UNDERSTANDING 10679 DISEASE AND PRECISION MEDICINE 10680 IDEA, TO FIGURE WHAT CAUSES 1068DISEASE, WHAT CAUSES IT TO BE 10682 WORSE. 10683 AS WELL AS COLLATERAL DAMAGE 10684 FROM DRUG TREATMENT. 10685 BUT WE HAVE A CLINICAL TRIAL 10686 MECHANISM IN THIS COUNTRY. 10687 I DON'T SEE THAT WHAT WE'RE 10688 TRYING TO DEVELOP. 10689 >> MY UNDERSTANDING IS THE WAY 10690 -- BIG PHARMA COMPANY DEVELOPS A 1069DRUG WE DOES CUSSED EARLIER TO 10692 EFFECT A SIGNIFICANT PORTION OF 10693 POPULATION IN A CERTAIN TYPE OF 10694 WAY. 10695 NOT LOOKING WHAT WHY IS CERTAIN 10696 POPULATIONS IN CERTAIN WAYS SO 10697 IF THAT'S NOT THE FOCUS AND NOT 10698 COLLECTING DATA, TO MAKE THE 10699 ARGUMENT FOR WHO IS THIS DRUG 10700 ACTUALLY TARGETING, THEY 1070CONTINUE DOWN THIS OLD PATH WE 10702 TRIED. 10703 AND YOUR WAY OF DOING THINGS. 10704 THEY'RE NOT ON BOARD WITH IT 10705 NECESSARILY SO I'M WONDERING IF 10706 THERE IS A PLAN TO ENERGY TWO 10707 PATHS. 10708 >> GREAT QUESTION. 10709 TRUE, IT'S NOT EITHER OR. 10710 WE DO NEED BOTH. 1071THE PURPOSE FOR THIS PARTICULAR 10712 PROJECT IS GENERATE HYPOTHESES 10713 AND RAISE QUESTIONS, SO SUSAN'S 10714 COMMENT, IT'S GOING TO GIVE 10715 INSIGHTS WE CAN SHARE WITH 10716 PHARMACEUTICAL AND BIOTECH 10717 COMPANIES AND HELP THEM POINT 10718 TOOLS IN THE RIGHT DIRECTION. 10719 SO THERE HAS TO BE A 10720 COLLABORATION, THERE IS NO US 1072THEM BACK TO THE POINT THAT'S 10722 BEEN MADE. 10723 THESE DON'T OPERATE EXCLUSIVELY 10724 TO EXCLUSION OF EACH OTHER. 10725 WE HAVE TO COLLABORATE BUT SO 10726 MUCH WE DONE UNDERSTAND BETWEEN 10727 CORRELATION AND GENOMIC BASIS 10728 AND BIOLOGICAL BASIS OF SO MANY 10729 DISEASES, THAT THIS PARTICULAR 10730 COMMUNITY BASED GENOME STUDY 1073RATHER THAN COHORT, MAY GIVE 10732 INSIGHT TO INFORM COLLABORATION 10733 WITHIN THE INDUSTRY. 10734 >> ONE COMMENT. 10735 I PERSONALLY WANT TO THANK THE 10736 PANEL, THEY HAVE BROUGHT 10737 IMPORTANT ISSUES. 10738 ONE COMMENT IS CHANGE OF 10739 LEXICON, CHANGE OF LANGUAGE, 10740 WHICH PANEL ARE YOU SUGGESTING 1074COHORT INTO COMMUNITY BASED 10742 PARTICIPATION. 10743 AND WHEN WE TALK ABOUT RESEARCH 10744 AND PATIENT IF YOU CHANGE THE 10745 TERM TERMS OF CONTRIBUTION 10746 CONTRIBUTORS, 1 MILLION 10747 VOLUNTEERS 1 MILLION 10748 CONTRIBUTORS YOU'RE CLOSING THE 10749 GAP WITHIN RESEARCHERS AND 10750 PATIENT POPULATION. 1075YOU ALSO INCREASE THIS -- 10752 ENCOURAGING THIS CONCEPT OF 10753 ADHERENCE TO RESEARCH 10754 PARTICIPATION. 10755 RESEARCHERS CANNOT DO ANYTHING 10756 WITHOUT PATIENT CONTRIBUTION TO 10757 RESEARCH. 10758 >> OUR PARTNERS. 10759 THANK YOU. 10760 SO I AM FINDING THIS INFORMATIVE 1076AND I HAVE A QUESTION THAT'S 10762 BASICALLY ABOUT THAT. 10763 SO I CHALLENGE A COMMENT, IT 10764 WON'T APPLY TO ALL AGE GROUPS 10765 AND WON'T APPLY TO ALL ETHNIC OR 10766 SOCIO ECONOMIC STATUS GROUPS AND 10767 I KNOW YOU KNOW THAT. 10768 ONE THING I WANT TO KNOW, ARE 10769 THERE MEN WHO LEAD ORGANIZES 10770 LIKE THIS, FROM WHAT YOU KNOW OR 1077ARE THEY LEADERS WITHIN? 10772 LAST MEETING WE HAD SOMEONE FROM 10773 SLEEP APNEA BUT IF YOU CAN TALK 10774 ABOUT IT SINCE YOU'RE ALL WOMEN, 10775 WE WOULDN'T WANT TO LEAVE THE 10776 IMPRESSION THIS ASPECT IS ALL 10777 THINGS. 10778 >> PURELY COINCIDENCE BECAUSE IF 10779 YOU LOOK, PATIENTS LIKE ME WAS 10780 STARTED BY JAMIE HAY WOOD, 1078PROSTATE CANCER WITH MILKEN, 10782 CYSTIC FIBROSIS WITH -- 10783 (OVERLAPPING SPEAKERS) 10784 >> MY HUSBAND AND I 10785 >> THERE ARE MEN. 10786 THERE ARE:. 10787 WE HAVE SEEN THEM ONCE. 10788 (OVERLAPPING SPEAKERS) 10789 >> YES. 10790 IF IT WAS JUST MOMS AND I SAID 1079NO. 10792 BUT WHEN YOU HAVE A SICK FAMILY 10793 MEMBER, THE PERSON WHO MAKES THE 10794 LEAST OFTEN IS THE ONE THAT HAS 10795 TO QUIT. 10796 AND STAY AT HOME PERSON IS ONE 10797 THAT DEALS WITH THE BURDEN, AND 10798 THEY'RE THE ONES MOTIVATED TO 10799 MOVE RESEARCH AND SCIENCE 10800 FORWARD BECAUSE THEY WANT IT 1080BETTER FOR THEIR OTHER CHILDREN 10802 OR SICK CHILD OR PARENT OR WHOM 10803 EVER. 10804 SO THAT IS SOMETIMES WHERE THE 10805 -- COMES FROM. 10806 >> WE LOVE OUR MEN, MY HUSBAND 10807 HAS MY SON AT THE DOCTOR RIGHT 10808 NOW WHILE I'M SITTING HERE. 10809 WHO AM I MISS SOMETHING 10810 >> I'M HOLLY (INAUDIBLE) WITH 1081RTI INTERNATIONAL AND PI OF DUE 10812 SHEN CONNECT PPRN. 10813 MANY OF YOU MENTIONED THE FACT 10814 THAT PATIENT COMMUNITIES AND 10815 WELL COMMUNITIES HAVE DIFFERENT 10816 RESEARCH PRIORITIES AND PERHAPS 10817 EPIDEMIOLOGIST WHOSE MAY HAVE 10818 DIFFERENT RESEARCH PRIORITIES 10819 AND CLINICAL RESEARCHERS, WONDER 10820 IF YOU CAN TALK ABOUT GIVEN 1082LIMITED AMOUNT OF RESOURCES AND 10822 TIME INVOLVED IN THE DATA 10823 COLLECTION, WE CAN'T COLLECT ALL 10824 THE DATA, CAN YOU TALK HOW TO 10825 PRIORITIZE AMONG COMPETING 10826 INTERESTS IN DIFFERENT KINDS OF 10827 DATA? 10828 >> I WILL TAKE A STAB. 10829 I WILL USE A PHRASE A QUESTION 10830 WE DEVELOP MANY YEAR AGO THAT 1083GUIDED MUCH OF WHAT WE DO AND 10832 I'M HAPPY TO HEAR IT BEING 10833 REPEATED IN DIFFERENCE PLACES 10834 BUT I THINK WHILE PRIORITIES ARE 10835 DIFFERENT AT THE BOTTOM LINE, 10836 GIVEN MY STATUS, HOW AM I DOING, 10837 WHAT DO I HAVE, WHO AM I, WHAT'S 10838 THE BEST OUTCOME WHICH IS NOT 10839 SOMETHING WE FOCUSED ON, WHAT IS 10840 THE OUTCOME TO ACHIEVE AND HOW 1084DO I GET THERE? 10842 THAT STATES A PRIORITY WE CAN 10843 GET OUR HANDS AROUND TO SAY THIS 10844 INITIATIVE SHOULD BE ABLE TO 10845 ANSWER THAT QUESTION FOR ANYONE 10846 PARTICIPATING IT MAY TAKE LONGER 10847 TIME FOR CERTAIN QUESTIONS TO 10848 GET ANSWERED THAT CAN TELL ME 10849 ABOUT STATUS, MAYBE WE DON'T 10850 KNOW ENOUGH WET YET WHAT GENETIC 1085BACK GROWN LOOK LIKE AGAINST 10852 POTENTIAL OUTCOMES AND 10853 INTERVENTIONS. 10854 THAT ONE FUNDAMENTAL QUESTION IS 10855 A COMMON PRIORITIZATION OF WHAT 10856 WE SHOULD BE THINKING ABOUT 10857 DOING. 10858 NOT SURE THAT ANSWERS DIRECTLY 10859 BUT IT'S A FUNDAMENTAL SHIFT WE 10860 NEED TO TAKE. 1086>> NOT JUST ONE TIME, YOU CAN 10862 ASK FOR MORE INFORMATION. 10863 IF WE FIND OUT INGROWN TOENAILS 10864 ARE RELATED TO BREAST CANCER WE 10865 CAN ASK THEM ABOUT INGROWN 10866 TOENAILS WHICH WE MAY NOT HAVE 10867 ASKED ABOUT THE FIRST TIME SO 10868 YOU HAVE TO THINK OF IT AS A 10869 LIVING DATA BECAUSE, NOT ONE 10870 TIME YOU COLLECT THE DATA AND 1087THAT'S IT FOREVER. 10872 >> WE FORGET TO APPLY, HOLLY 10873 SPEAKING TO A CHOIR, THINGS WE 10874 THINK ABOUT IN OUR OWN LIVES HOW 10875 DATA IS INCREMENTALLY ACCRUE AND 10876 HOW WE SHIFT OUR NEED. 10877 AND I ACTUALLY GET THE STRICT 10878 METHODOLOGISTS WOULD SAY YOU CAN 10879 ONLY USE THESE DATA FOR THE 10880 THINGS FOR WHICH THEY WERE 1088COLLECTED AND NOT SOMETHING 10882 ELSE. 10883 THAT DOESN'T REALLY ANSWER SO IF 10884 I HAD TO MAKE A CHECKLIST OF 10885 WHAT DATA BECAUSE THIS IS NOT A 10886 LOT OF MONEY, THIS IS NOT A LOT 10887 OF MONEY. 10888 THE OTHER PIECE FOR ME, WHAT CAN 10889 THIS ENABLE IN TERMS OF CULTURE 10890 CHANGE AND NEW METHODOLOGIES AND 1089NEW TECHNOLOGIES THAT WOULD 10892 ALLOW US TO DO THIS ON MORE 10893 MASSIVE SCALE, IN TEN YEARS THIS 10894 COUNTRY UNDERSTANDS ALL OF US 10895 BEING AN ANSWER TO UNDERSTANDING 10896 HEALTH AND DISEASE IS A GOAL. 10897 THAT STUFF WOULD INCREASE VASTLY 10898 WHAT WE COULD DO. 10899 THAT DOESN'T MEAN WE DO ONE 10900 THING AND CALL IT ONE -- BUT WE 1090DO MANY THINGS AND NETWORK 10902 EFFECTS REALLY RULE. 10903 >> KATHY HUDSON FIRST. 10904 >> AN OBSERVATION IN THE EARLIER 10905 PANEL COMPANY THEY SUBMITTED 10906 RESEARCH PROPOSALS OR 10907 PUBLICATIONS WITH MINORITY 10908 PARTICIPANTS, PEOPLE ASK WHERE 10909 THE WHITE FOLKS WERE AND WHEN WE 10910 HAVE MALE PANELS DON'T GET 1091QUESTIONS ABOUT WOMEN 10912 RESEARCHERS. 10913 >> THAT'S TRUE. 10914 >> MY NAME IS AARON AND I HAVE A 10915 Y CHROMOSOME. 10916 >> WE WON'T HOLD IT AGAINST YOU. 10917 >> THE LAST TWO YEARS WE 10918 VOLUNTEERED TO OPERATE -- I 10919 VOLUNTEERED TO OPERATE THE 10920 NATIONAL ASSOCIATION FOR 1092EXCHANGE WE'RE THRILLED GENETIC 10922 ALLIANCE WAS USE AND INVITE 10923 ANYONE ELSE TO AS WELL. 10924 MY QUESTION IS A SEGUE FROM 10925 EARLIER QUESTION ABOUT CAPACITY. 10926 ONCE WE ACTIVATE THE CONSUMER, 10927 THE PATIENT, THE FAMILY 10928 CAREGIVER, WE WILL HAVE SO MANY 10929 BIOSPECIMENS THEY WILL GO TO 10930 WAIST GIVEN CAPACITY WE HAVE 1093TODAY. 10932 IS THERE -- SCIENCE WE CAN APPLY 10933 TO BE SURE TO GET THE POST OUT 10934 OF THOSE THINGS HOW DO WE 10935 PREPARE FOR THAT ON SITEFUL? 10936 -- ON SITE? 10937 >> I THINK WE HAVE TO BROADEN 10938 THE DOOR AN OPEN THE TENT TO 10939 OTHER KINDS OF RESEARCHERS. 10940 WE HAVE TRADITIONAL RESEARCHERS 1094WORKING IN THIS FIELD AND I 10942 THINK WE NEED TO FIGURE OUT AND 10943 I'M NOT SUGGESTING PEEP DOLL PUT 10944 OVARIES NEXT TO ICE CREAM BUT I 10945 THINK WE'LL NEED OTHER WAYS FOR 10946 OTHER KINDS OF SCIENCES TO GET 10947 INVOLVED. 10948 AND OTHER TECHNOLOGIES TO TURN 10949 AM SAMPLES INTO INFORMATION SO 10950 THAT CAN BE SHARED AN STORED, ET 1095CETERA. 10952 AND I THINK WE'RE GOING TO ALSO 10953 WANT TO WATCH THE MARKET EFFECT 10954 OF SOMETHING LIKE THIS BECAUSE 10955 WHILE RIGHT NOW COMPANIES ARE 10956 TRYING TO DEVELOP A DRUG WITH 10957 $3 BILLION AND 95% FAILURE RATE, 10958 THERE'S OTHER COMPANIES THAT 10959 WILL WANT TO BE IN THE GAME 10960 MOVING THINGS QUICKLY AND THE 1096SAME OPEN SPACE STUFF THAT 10962 HAPPENED TO OTHER INDUSTRY LIKE 10963 MUSIC AND PUBLISHING WILL HAPPEN 10964 AS WELL SO WE HAVEN'T IMAGINED 10965 YET WHAT IN FIVE YEARS THE 10966 CONVERSATION WOULD LOOK LIKE. 10967 >> SOME YOU NEED TO CATCH AT 10968 CERTAIN POINT IN TIME TUMOR 10969 TISSUE, THINGS LIKE THAT BUT 10970 OTHER THINGS, YOU MAY WAIT AND 1097COLLECT, YOU HAVE THIS WHOLE 10972 GROUP AND CHECK IT WHEN YOU NEED 10973 IT. 10974 BECAUSE TECHNOLOGY AND WAY YOU 10975 COLLECT IT MAYBE DIFFERENT. 10976 >> I'M IN THE ARMY OF WOMEN AND 10977 I LIKE SUSAN SAYS WE'RE WALKING 10978 BIOBANKS. 10979 WE ARE RIGHT HERE AND READY. 10980 >> JUST IN TIME BIOBANKS. 1098>> NI THEDDK. 10982 THIS IS A FANTASTIC PANEL. 10983 CAN YOU BRIDGE THE GAP AND TALK 10984 ABOUT HOW YOU HAVE BEEN 10985 SUCCESSFUL IN GETTING THE 10986 UNDER-REPRESENTED, THE 10987 VULNERABLE, BECAUSE I'M 10988 WONDERING IF IT ISN'T A PANEL OF 10989 THOUSANDS OF BILLIONS OF HIGH 10990 SOCIO ECONOMIC GROUPS WITH 1099PARTICULAR DISEASES OR 10992 PARTICULAR INTERESTS, PARTICULAR 10993 LITERACY. 10994 >> I WILL SPLIT THAT TO TWO 10995 QUESTIONS. 10996 HOW -- WE HAVE BEEN SUCCESSFUL 10997 THAT WE RETURN DATA AGGRAVATED 10998 DATA IMMEDIATELY TO OUR 10999 FAMILIES. 11000 SO WE MAY HAVE BURDENED THEM 1100WITH HOUR WORTH OF SURVEY 11002 QUESTIONS EMOTIONAL FOR THEM TO 11003 ANSWER AND THEY MAY HAVE HAD TO 11004 DIG OUT MEDICAL RECORDS ON THEIR 11005 CHILD, BUT AT THE END THEY 11006 CLICKED ON A QUESTION AND SEE 11007 HUH THEIR ANSWER COMPARED TO THE 11008 OTHER PATIENTS ACROSS THE WORLD. 11009 THAT'S THE REWARD. 11010 IT WASN'T A GIFT CARD, IT WASN'T 1101ANY OTHER INCENTIVE, IT WAS 11012 KNOWLEDGE. 11013 WHEN YOU TALK ABOUT CERTAIN 11014 COMMUNITIES PEOPLE THAT ARE 11015 UNABLE TO GET OUT AND IMMEDIATE 11016 OTHER PEOPLE WITH THEIR 11017 CONDITION KNOWLEDGE IS 11018 EMPOWERING, IT HELPS TAKE CARE 11019 OF THEMSELVES AND FAMILY MEMBERS 11020 BETTER. 1102THAT IS HOW WE HAVE BEEN 11022 SUCCESSFUL BUT YOUR QUESTION, 11023 HOW ARE WE SUCCESSFUL WITH THE 11024 UNDER-REPRESENTED. 11025 WE'RE NOT BECAUSE IT REQUIRES 11026 GENETIC TESTING. 11027 THAT IS A SOCIO ECONOMIC ISSUE, 11028 INSURANCE ISSUE UNTIL THERE'S 11029 SEQUENCING DONE WIDELY AND CAN 11030 BE RETURNED TO THE PATIENT, NOT 1103JUST USED IN RESEARCH, FOR 11032 INSTANCE, IF EVERYBODY WITH 11033 AUTISM OR EVERYBODY WITH 11034 INTELLECTUAL DISABILITIES OR 11035 EVERYBODY WITH EPILEPSY WERE 11036 REFERRED TO GENETIC TESTING, OUR 11037 COMMUNITY WOULD BE MUCH, MUCH 11038 BIGGER. 11039 BUT RIGHT NOW IT'S ONLY PEOPLE 11040 THAT PUSH TO GET FEWS IS IN A 1104MEDICAL SENT THEIR WILL GIVE THE 11042 REFERRAL BECAUSE MOST PEOPLE 11043 WOULD BE OKAY WITH ANYONE OF 11044 THOSE THREE COMMON COMMON 11045 DIAGNOSES. 11046 SO WE HAVE BEEN UNSUCCESSFUL BUT 11047 THESE GUYS NAVE DONE IT. 11048 >> WE HAVE BEEN SUCCESSFUL WHICH 11049 SKEWS OLDER MALE AND AFRICAN 11050 AMERICAN AND WE DID A SEQUENCING 1105PROJECT OF A THOUSAND PATIENTS 11052 AND IT WAS REPRESENTATIVE OF THE 11053 PATIENT DEMOGRAPHICS OF THE 11054 DISEASE. 11055 BUT WE PAID FOR THE SEQUENCING. 11056 AND IT WAS INCREDIBLY EXPENSIVE 11057 AND WE LOOKED FOR COMMUNITY 11058 HOSPITALS THAT WOULD SEE THAT 11059 PATIENT POPULATION. 11060 AND ENROLL AS WELL I KNOW WE 1106HAVE A FEW MORE QUESTIONS. 11062 >> WE TAKE ALL COMERS SO IT'S 11063 CHALLENGING TO THINK ABOUT THAT 11064 BUT ONE THING I WOULD LIKE YOU 11065 TO KNOW IS THAT WHEN WE START TO 11066 DEVELOP A PARTICULAR COMMUNITY 11067 WE DO A VERY STRATEGIC 11068 ENGAGEMENT IN ETHNOGRAPHIC 11069 APPROACH TO THAT AND REACH OUT 11070 AND TRY TO FIND AS MUCH 1107REPRESENTATION AS POSSIBLE SO 11072 WHERE WE HAVE DONE THAT WE ARE 11073 REPRESENTATIVE THE OF THE 11074 IMMUNITY SO EPILEPSY ORGAN 11075 TRANSPLANT IPF WHICH IS A RARE 11076 CONDITION. 11077 TRUE ENOUGH ACROSS THE BOARD WE 11078 SKEW FEMALE, WE SKEW HIGHER 11079 EDUCATION LEVEL BUT WHEN WE 11080 THINK ABOUT THE CONDITION WE'RE 1108FULLY DEVELOPING WE 11082 INTENTIONALLY REACH OUT TO AS 11083 MANY DIVERSE GROUPS WE CAN. 11084 >> SEAN -- I WANT TO PROPOSE IF 11085 YOU THINK THE CONVERSATION 11086 TRADITIONAL PATIENT ENGAGEMENT 11087 VIA CLINIC ENVIRONMENT, CLINICAL 11088 STUDY, THAT ENGAGEMENT, CURIOUS 11089 IF KIND OF BROADER CORPORATE 11090 PARTNERSHIPS OF ENCOURAGING 1109COMPANIES TO VOLUNTEER THEIR 11092 EMPLOYEES WHEN THEY PARTICIPATE, 11093 AND PROPOSING GREATER 11094 PARTNERSHIPS THE BLOOD BANK IDEA 11095 EARLIER, PHARMACIES TO RECRUIT, 11096 LEVERAGE THE CHANNEL THAT 11097 EXISTED IN NEW PATIENT 11098 ENGAGEMENT AND PERHAPS COMPANIES 11099 THAT HAVE CERTAIN SOCIO ECONOMIC 11100 EMPLOYEES LIKE WAL-MART OR DENNY 1110T OR DIFFERENT GROUPS CAN TARGET 11102 SOME OF THESE THINGS ONCE YOU 11103 HAVE YOUR PROTECTED OR GROUP 11104 YOU'RE CONCERNED ABOUT BEING 11105 UNDER-REPRESENTED. 11106 >> WE ACTUALLY DON'T WORK IN 11107 CLINICAL SETTINGS AT ALL. 11108 AND ALL OF OUR WORK IS IN 11109 COMMUNITIES. 11110 I DON'T THINK ANY OF US DO. 1111EVEN OUR MD DOESN'T. 11112 BUT WE HAVE FOR EXAMPLE, PCORNET 11113 PARTNERED WITH CVS SO THE PPRN 11114 CONDITIONS WHICH THERE ARE 11115 HUNDRED WILL BE LISTED ON THEIR 11116 WEBSITE AND DISTRIBUTED IN THE 11117 MINUTE CLINIC. 11118 GENETIC ALLIANCES WORK WITH 11119 WAL-MART ON FAMILY MYSTERY WITH 11120 THEIR EMPLOYEES ONLY BECAUSE 1112THAT'S CERTAINLY A LARGE ENOUGH 11122 COMMUNITY TO DO THAT AND WITH 11123 CORPORATIONS AND DIFFERENT PARTS 11124 OF THE COUNTRY SPONSORING 11125 WORKING IN APPALACHIA OR 11126 WESTCHESTER COUNTY WITH AFRICAN 11127 AMERICANS. 11128 >> I HAVE A COUPLE OF COMMENTS. 11129 ONE IS, WITH THE NUMBERS WE'RE 11130 TALKING ABOUT AND THE SYSTEMS 1113THAT WILL BE ENGAGING, WE HAVE 11132 TO BE VERY CAREFUL ABOUT THESE 11133 GROUPS. 11134 THERE HAS TO BE A LOT OF 11135 TRAINING THAT NEEDS TO GO ON. 11136 WHERE COHORTS ARE, WHETHER 11137 COMMUNITY HEALTH CENTERS OR 11138 HEALTH SYSTEMS, WHATEVER, PEOPLE 11139 MANAGING OR HELPING YOU MANAGE 11140 OR BRING THEM ON BOARD, BECAUSE 1114THEY'RE A LOT -- THE SQACs 11142 HAVE A NUMBER OF MINORITY 11143 POPULATIONS PREVIOUSLY 11144 CONSIDERED VULNERABLE 11145 POPULATIONS. 11146 SO I WOULD THINK THAT THERE'S A 11147 LOT OF LOT OF LEGAL WORK THAT 11148 HAS TO BE DONE TO (LOST AUDIO) 11149 -- 11150 >> I'M A MEMBER OF A COHORT. 1115SO YOU NEED TO BE PREPARED FOR 11152 THAT. 11153 WHAT ARE THE SERVICES. 11154 WE KNOW THIS BUT WHERE DO WE GO 11155 FROM HERE. 11156 THE OTHER COMMENT IS IF WE'RE 11157 NOT CAREFUL THERE COULD BE A 11158 REALLY BE A RESEARCH BACKLASH 11159 WHICH WOULD NOT BE GOOD. 11160 >> ONE MORE I THINK. 1116>> MY NAME IS JOHN BURR. I'M AN 11162 HL INVESTOR. 11163 U I HAVE A QUESTION THAT 11164 INVOLVES NOT CREATIVITY BUT 11165 IMAGINATION. 11166 YOU THANK YOU VERY MUCH HOW MUCH 11167 CHANGED THE LAST FIVE YEARS. 11168 LOOK AHEAD FIVE TO TEN YEARS 11169 PLEASE AND CONSIDER THE 11170 POSSIBILITY NOT A COHORT OF A 1117MILLION BUT OF 320 MILLION. 11172 ALL AMERICAN PATIENTS, DATA 11173 BEING AVAILABLE, IN ONE PLACE. 11174 ING AER RATION -- ACCESSIBLE. 11175 WHAT WOULD THAT COHORT LOOK 11176 LIKE? 11177 SAME QUESTIONS YOU ASK ABOUT 11178 THIS COHORT. 11179 CONSIDER FOR A MOMENT WHAT A 11180 COHORT OF 300 MILLION LOOKS 1118LIKE. 11182 >> DO YOU WANT US TO COMMENT ON 11183 THAT? 11184 >> THAT'S A QUESTION. 11185 WHAT WOULD IT LOOK LIKE? 11186 >> IF IT'S ALL THE U.S., IT'S 11187 REPRESENTED BUT THE QUESTION 11188 COMES BACK TO SURVEY WE SAW THIS 11189 MORNING WHICH SHOWED THE 11190 VARIABILITY OF 21-YEAR-OLDS AND 1119WHAT THEY DO VERSUS OLDER PEOPLE 11192 AND HOW YOU WOULD BE TALKING 11193 WITH THEM. 11194 FOR THE YOUNGER GENERATION 11195 THEY'RE MUCH MORE ABOUT 11196 PREVENTION AND WELLNESS AND 11197 EVERYTHING IS ON THEIR PHONE AND 11198 I THINK THEY HAVE SEEN ENOUGH I 11199 WILL FINANCE THEIR LIVES THAT 11200 THEY'RE NOT NECESSARILY GOING TO 1120BE ANYTHING LIKE THE 50 AND 11202 60-YEAR-OLDS IN THIS COHORT. 11203 SO IT WOULD CHANGE A LOT. 11204 I THINK YOU HAVE HALF THE COHORT 11205 LOOKING AT PREVENTION THEN YOU 11206 HAVE THE OLDER COHORT AT NEXT 11207 GENERATION TOOING TO TAKE CARE 11208 OF THEM DOING IT ALTRUISTICALLY 11209 THAT CHANGES EVERYTHING. 11210 BUT I DON'T KNOW IF WE SHOULDN'T 1121BE CONSIDERING THAT WHEN WE LOOK 11212 AT THE SURVEY RESULTS THAT CAME 11213 IN THAT WAS THE FIRST THAT WAS 11214 GOING THROUGH MY MIND, WE SAW 11215 THE SURVEY BUT DIDN'T UNDERSTAND 11216 IN THAT SURVEY HOW IT CHANGED 11217 BASED OFF AGE AND WHO WAS REALLY 11218 GOING TO BE ENGAGED IN THIS. 11219 I'M A BIG FAN FOR YOU WANT 11220 PEOPLE THAT REALLY WANT TO DO 1122THIS. 11222 AND REALLY WANT TO GET INVOLVED 11223 AND WILL GIVE YOU AS MUCH 11224 INFORMATION AS POSSIBLE. 11225 AND GIVE YOU THAT LOW HANGING 11226 FRUIT BECAUSE YOU WANT TO SEE A 11227 FEW WINS BECAUSE EVERYBODY IS 11228 SKEPTICAL WHETHER WE THE 11229 GOVERNMENT, ANYBODY CAN GET 11230 ANYTHING THIS BOLD DONE. 1123I THINK WE HAVE TO SHOW SOME 11232 SHORT TERM WINS AS WE START. 11233 >> WHEN WE STARTED THE ARMY OF 11234 WOMEN WE SAID WE WANT AD MILLION 11235 WOMEN THEN WE REALIZED WE DON'T 11236 KNOW WHAT TO DO WITH THOSE 11237 WOMEN. 11238 WE DON'T HAVE ENOUGH STUDY FOR 11239 380,000 REWOMEN BECAUSE WE HAVE 11240 TO GET THE RESEARCHERS ALONG SO 1124WE HAVE TO BE CAREFUL WE NEED A 11242 CIVIL PARTY PAYER HEALTHCARE 11243 SYSTEM IF WE HAD THAT PROBABLY. 11244 WE DO. 11245 THAT'S ANOTHER PANEL. 11246 I THINK THAT WE HAVE -- I THINK 11247 YOU HAVE TO BE CAREFUL, IT 11248 SOUNDS GREAT BUT YOU HAVE TO 11249 THINK THROUGH WHAT YOU WOULD DO 11250 AND WHAT ALL THE RAMIFICATIONS 1125WOULD BE WITH THAT. 11252 >> I WOULD ALSO ADD IT OPENS P 11253 UP A HUGE PANDORA'S BOX. 11254 YOU'RE LIKE OH MY GOSH WE HAVE 11255 EVEN IN THIS. 11256 I ALSO THINK THERE'S A LOT TO BE 11257 SAID AROUND VEHICLETIVE 11258 PERCEPTION, EVERY PERSON GOING 11259 TO COME TO SOMETHING LIKE THIS 11260 WITH THEIR OWN SET OF 1126PERCEPTIONS WHAT IT MEANS TO 11262 THEM, WHAT THEY WANT FROM IT. 11263 HOW THEY VIEW IT. 11264 BASED ON THEIR OWN BEHAVIORS AND 11265 THEIR OWN BELIEFS AND SOME OF 11266 THAT WILL I THINK BE 11267 OPPORTUNITIES AND SOME COULD 11268 ALSO BE -- BRING WEAKNESSES TO 11269 THE COMMUNITY THAT COULD 11270 ACTUALLY THEN NEED TO HAVE TO 1127SORT THAT OUT SO IT FEELS TO ME 11272 LIKE HAVING EVERY PERSON BORN IN 11273 THIS COUNTRY AT SOME POINT BEING 11274 ABLE TO BE FOLLOWED AND CLEARLY 11275 UNDERSTOOD OVER TIME IN TERMS OF 11276 WHAT THEIR HEALTH OPPORTUNITIES 11277 AND SOME OF THE DISPARITIES 11278 MIGHT BE MIGHT SOUND LIKE A 11279 WONDERFUL PLACE TO BE, MAYBE 11280 THAT'S WHERE WE WILL BE SOME 1128DAY. 11282 THAT H CONFLICT LOTS OF OTHER 11283 QUESTIONS AND ISSUES AND 11284 CONCERNS THAT EVERYBODY PERSON 11285 WHO COULD POTENTIALLY BE 11286 INVOLVED HAS TO ASK QUESTIONS 11287 AND THAT'S NOT RELEVANT TO EVERY 11288 SINGLE PERSON WHO WOULD BE 11289 ENROLLED IN WHAT YOU DESCRIBED. 11290 >> LAST WORD PER SHARE. 1129>> I THINK WE CAN IMAGINE 11292 FRICTIONLESS AND INVISIBLE SO WE 11293 WILL ENGAGE TO THE DEGREE WE 11294 WANT AND SOME INTENSELY ENGAGE 11295 AND OTHERS MORE PASSIVELY 11296 ENGAGED WITH PERMISSION. 11297 BUT THAT BECAUSE OF THAT, IT 11298 WILL BE IN OUR PATHWAYS PART OF 11299 OUR LIVES THE WAY OTHER DATA 11300 COLLECTION IS ABOUT US WITH THE 1130RIGHT SAFETY AND PRIVACY 11302 PROTECTION SO THAT IT WILL BE 11303 PART OF THE FABRIC OF WHO WE ARE 11304 AND NOT BE HEAVY LEFT. 11305 >> SO WITH THAT, I'M GOING TO 11306 SAY SHARON YOU SAID TO US THAT 11307 YOU WISH YOU HAD BEEN BOLDER AND 11308 MR. CXFC FEARLESS. 11309 LET'S HOPE THIS PROJECT IS BOLD 11310 AND FEARLESS. 1131THANK YOU TO THE PANELISTS. 11312 [APPLAUSE] 11313 >> FOR THE NEXT PANEL I WOULD 11314 LIKE TO THE INTRODUCE SACHIN 11315 KHETERPAL. 11316 >> IF I CAN HAVE THE PANELISTS 11317 COME UP, THAT WOULD BE 11318 WONDERFUL. 11319 >> WE DON'T HAVE POWERPOINT FOR 11320 THIS WE HAVE FOUR POWERPOINT IN 1132ONE HOUR TO ADDRESS AN EXCITING 11322 QUESTION WHICH IS WHAT ARE WE 11323 THINKING ABOUT DATA SHARING 11324 HERE? 11325 WE TALKED ABOUT IT, WE KIND OF 11326 GONE AROUND IT, WE HEARD 11327 DIFFERENT PERSPECTIVES ON IT. 11328 I THINK IN THIS PANEL YOU'LL SEE 11329 CONSISTENCY OF THOUGHT BUT MAYBE 11330 THROUGH DIFFERENT EXPERIENCES. 1133IN PARTICULAR MIGHT BE IN 11332 CONFLICT WHAT SURVEY RESULTS WE 11333 SAW THIS MORNING WHICH IS 11334 REGARDING PRIVACY AND A LOT 11335 REGARDING ME DECIDING WHAT 11336 HAPPENS TO MY DATA. 11337 SO WHAT WE'LL DO IS ADDRESS 11338 THREE IMPORTANT QUESTIONS, 11339 FUNDAMENTALLY WHAT ARE 11340 SUCCESSFUL MODELS OUT THERE FOR 1134DATA SHARING AND A BROADWAY THAT 11342 INCORPORATED THE PARTICIPANTS 11343 PERSPECTIVES AND ADDRESS THAT, 11344 I'M GOING TO ASK THE PANELISTS 11345 IN SEQUENCE TO GIVE THEIR -- ON 11346 IT. 11347 FIRST WE HAVE LAURA BIERUT, 11348 PROFESSOR WASU. 11349 INSTEAD OF A LENGTHY BIO I CHOSE 11350 A FEW WORDS, SHE CALLS HERSELF 1135QUEEN OF VICE, SHE FOCUS ON 11352 ADDICTION TOBACCO AND ALCOHOL, 11353 THEN MATT MIKE RESEARCH 11354 VIGILANTE, MANY OF YOU KNOW 11355 MATT'S BACKGROUND HIS SON HAS A 11356 DISEASE, DIDN'T KNOW WHAT IT WAS 11357 UNTIL MATT CAME ALONG USING THE 11358 COMPUTER ENGINEERING BACKGROUND 11359 UNIVERSITY OF UTAH FIGURED IT 11360 OUT AND A WORLD OF COLLABORATION 1136AROUND IT. 11362 NEXT ROB RING WHO TRANSSENDS 11363 BACK TO ADVOCACY GROUP AT AUTISM 11364 SPEAKS AN CHIEF PSYCHOOFFICER 11365 THERE AND NANCY ROACH, WHOSE 11366 LATEST TITLE AND AMAZING 11367 ADVOCACY EFFORT AS RESEARCH 11368 ACTIVIST IS AT TO FIGHT 11369 CO-COLORECTAL CANCER. 11370 SO WHAT ARE SUCCESS STORIES YOU 1137HAVE HEARD OR EXPERIENCED, 11372 LAURA, TO GET US STARTED ON 11373 THAT. 11374 >> THANK YOU. 11375 I WORK IN ADDICTION AND GENETIC 11376 CONTRIBUTIONS OF ADDICTION AND 11377 SO ONE ISSUE I HAVE HAD IS I 11378 TOUCH ON MANY OF THE IRB ISSUES 11379 THAT IS GREAT CONCERN, DEALING 11380 WITH SUBSTANCE USE WHICH IS 1138OFTEN PROTECTED DATA, ILLEGAL 11382 ACTIVITIES WITH DRUG USE, IT'S 11383 OFTEN IN UNDERSERVED POPULATIONS 11384 AND UNDER-REPRESENTED GROUPS. 11385 I HAVE COLLECTED OVER 15,000 11386 SAMPLES WITH GENETIC DATA 11387 DEPOSITED TO THE NATIONAL 11388 REPOSITORY SO 25 YEARS AGO WHEN 11389 STUDY STARTED WE HAD MODELS OF 11390 CONSENT WITH MULTIPLE LAYERS OF 1139CONSENT, CAN WE SHARE WITH 11392 INDUSTRY, CAN WE SHARE WITH 11393 INVESTIGATOR OUTSIDE OF OUR 11394 UNIVERSITY, CAN WE SHARE WITH 11395 INVESTIGATORS IN THE WORLD. 11396 STUDIES RELATED TO ALCOHOL DRUG 11397 USE, RELATED ASPECT AND FIVE 11398 YEARS AGO I SIMPLIFIED OUR 11399 CONSENT FORMS AN MOVED THEM ALL 11400 OR NOTHING SHARING. 1140THE REASON WE MOVED THIS WAY WAS 11402 SEVERAL FOLD. 11403 ONE IS ALL SUBJECTS REGARDLESS 11404 RACE GENDER EDUCATIONAL STATUS 11405 AGREED TO BROAD SHARING. 11406 SECOND PART WAS WHEN THERE WERE 11407 DIFFERENCE CHECK MARKS, AT TIMES 11408 THERE WASN'T CONSISTENCY, THERE 11409 WAS CONFLICT AGREE TO SHARING IN 11410 ONE PART BUT NOT ANOTHER PART, 1141SHARING WITH INVESTIGATORS 11412 AROUND THE WORLD BUT NOT WITH 11413 INVESTIGATORS WHO ARE OUTSIDE OF 11414 WASHINGTON UNIVERSITY. 11415 SINCE WE HAD CHECK BOXES WE SAW 11416 THEM AS KIND OF A LOGICAL STEP, 11417 THE SUBJECTS WOULD CHECK 11418 DIFFERENT BOXES. 11419 SO THERE WASN'T A LOGICAL GROUP 11420 HERE. 1142THE OTHER ISSUE HAD TO DO WITH 11422 IRB AND HOW GROUPS STARTED 11423 INTERPRETING CONSENT SO WE ASKED 11424 QUESTIONS ABOUT ALCOHOL AND 11425 RELATED DISEASES AND WE ASK 11426 QUESTION ABOUT THEIR ALCOHOL 11427 USE, SUBSTANCE USE, THEIR 11428 PSYCHIATRIC ILLNESS AND THEIR 11429 MEDICAL ILLNESSES. 11430 I VIEW ALL THIS IN THE 1143INVESTIGATORS AND WE THOUGHT THE 11432 SUBJECTS ALSO VIEWED THIS AS 11433 ALCOHOL AND RELATED CONDITIONS 11434 ALL THESE RELATED CONDITIONS. 11435 WHAT HAPPENED DATA DB GAP OVER 11436 TEN YEAR PERIOD SO WE DEPOSITED 11437 FURTHER DATA. 11438 WE HAVE APPROVAL TO DO THIS 11439 BROAD SHARING OF DATA. 11440 THE NEXT TIME, FIVE YEARS LATER, 1144WE WENT TO DB GAP, THE MEDICAL 11442 ILLNESS GOT CUT OFF BECAUSE IT 11443 WAS ALCOHOL AND RELATED 11444 CONDITIONS SO MEDICAL CONDITIONS 11445 WERE NO RELATED CONDITIONS. 11446 NEXT TIME THE PSYCHIATRIC 11447 ILLNESS GOT CUT OFF. 11448 NOW WE ARE ONLY ALLOWED TO 11449 SUBMIT ALCOHOL IN RELATED 11450 CONDITIONS WHICH IS DRUG USE. 1145SO THOUGH I BELIEVE OUR 11452 PARTICIPANTS AS A SIGNED INITIAL 11453 CONSENT BELIEVED IN BROAD 11454 SHARING THAT WE AS INVESTIGATORS 11455 BELIEVED IN THIS BROAD SHARING, 11456 IT'S NARROWED OVER THE YEARS 11457 BECAUSE OF IRB CONDITIONS. 11458 WITH THIS FIVE YEARS AGO I 11459 BROADENED THE CONSENT AS WIDE AS 11460 I COULD GET THE LANGUAGE 1146INCREDIBLY BROAD BY IRB 11462 RECOGNIZING THAT 25 YEARS OF 11463 CONSENT FORMS SO THERE'S CHANGES 11464 OVER THE YEARS. 11465 OUR INTENTION IS AS BROAD 11466 SHARING AS POSSIBLE. 11467 WE HAVE 90% PARTICIPANTS FROM 11468 PREVIOUS STUDIES AGREE IF 11469 SOMEONE DOES NOT AGREE TO BROAD 11470 SHARING, WE RECOGNIZE THOSE 1147PREFERENCES BUT DECIDED WE'RE 11472 NOT GOING TO RECRUIT TO THE 11473 STUDY. 11474 THE OTHER ISSUE IS SIMPLIFIED 11475 RESEARCH RECRUITMENT SIMPLIFIED 11476 DATABASE MANAGEMENT, I HAVE 11477 SIGNIFICANT CONCERNS THAT I WANT 11478 TO UPHOLD OUR PARTICIPANT 11479 PREFERENCES AND WHEN WE HAVE ALL 11480 THESE DIFFERENT LEVELS OF 1148CONSENT I LIVE IN FEAR I WILL 11482 NOT BE ABLE TO DO IT SO BROAD 11483 SHARING THAT'S WHERE I GO, I 11484 LOVE BROAD SHARING. 11485 >> AND YOUR PARTICIPANTS WANT 11486 THAT. 11487 >> MY PARTICIPANTS WANT IT. 11488 AND IT'S FOR THINGS THAT I COULD 11489 NEVER IMAGINE. 11490 GOING FORWARD. 1149>> YOUR EXPERIENCE IN A VERY 11492 MOTIVATED DRIVING DATA CURE 11493 RATION AND DISEASE SOLVING, YOUR 11494 EXPERIENCE IS THERE. 11495 >> BEFORE I GET TO MY SUCCESS 11496 STORY, I'M AN EXTREMIST ON THIS 11497 MATTER. 11498 ED FROM THERE'S HUGE ADVANTAGES 11499 TO BEING EXTREMIST. 11500 YOU GET TO HAVE SIMPLE ANSWERS 1150TO COMPLEX QUESTIONS. 11502 SO NON-P MENTION RESEARCH HAS 11503 ACCESS TO MY DATA OR SHOULD WE 11504 SHARE DATA ABOUT PARTICIPANTS OR 11505 SHOULD WE SHARE DATA BETWEEN 11506 PARTICIPANTS, MY SIMPLE ANSWER 11507 IS IT DEPENDS. 11508 IT SHOULD NOT DEPEND UPON, NOT 11509 DEPEND WHETHER THERE'S A 11510 COMMERCIAL INTEREST KEEPING A 1151PATIENT'S DATA PRIVATE AND SOME 11512 ASPECTS IN THE ROOM, ACADEMIC 11513 INTEREST IN KEEPING THAT DATA 11514 PRIVATE, I KNOW THAT HURTS, 11515 HURTS ME AS ACADEMIC TOO. 11516 AND IT SHOULDN'T DEPEND ON 11517 WHETHER OR NOT SOME IRB SAYS 11518 THAT A PATIENT NEEDS TO PROJECT 11519 IT FROM THEIR OWN DATA. 11520 AS FAR AS I'M CONCERNED THE ONLY 1152THING THAT MATTERS WITH 11522 PARTICIPANT DATA IS ANSWER THE 11523 QUESTION WHAT DOES PARTICIPANT 11524 WANT YOU TO DO WITH IT? 11525 THAT'S IT. 11526 PARTICIPANT BECAUSER WANTS TO 11527 SHARE DATA BROADLY GO AHEAD. 11528 IF THEY PREFER A SINGLE 11529 RESEARCHER OR INSTITUTION, KEEP 11530 IT WITHIN THAT INSTITUTION. 1153IF THEY WANT TO SEE THEIR DATA, 11532 SHOW THEIR DATA, IF THEY DON'T, 11533 DON'T. 11534 IF I WERE DESIGNING FORMS I 11535 WOULD HAVE OPTIONS FOR EACH 11536 PARTY, I WOULD LIST MAY NOT 11537 SHARE, MAY SHARE AND MUST SHARE. 11538 SOMETIMES WE'RE IN DANGER OF 11539 UNDERSHARING. 11540 IF FACEBOOK CAN HAVE FINE 1154GRAINED USER TIME CONTROL OVER 11542 SHARING OF DATA CERTAINLY 11543 MEDICAL RESEARCH DOES THAT TOO. 11544 I THINK WE SPEND A LOT OF TIME 11545 FRY TRIKING TO PROTECT PEOPLE 11546 FROM THEIR OWN DATA. 11547 OF COURSE THE PARENTS OF A CHILD 11548 RADICAL RELEASE IN SHARING DATA 11549 HAVE BEEN CRITICAL. 11550 I HAVE SEEN THE PROMISE 1155FIRSTHAND SO LET ME SHARE. 11552 THREE YEARS AGO I WAS TOLD FIRST 11553 AND ONLY CASE OF PARTICULAR 11554 GENETIC DISORDER. 11555 IN ORDER TO FIND OTHERS LIKE HIM 11556 I HAD TO RELEASE DATA, I HAD NO 11557 CHOICE BUT TO DUMP ALL HIS DATA 11558 THE ON THE INTERNET THAT'S WHEY 11559 DID. 11560 ALL ON A BLOG POST DESIGNED TO 1156FIND OTHER PATIENTS. 11562 IT WORKED. 11563 THREE YEARS LATER TODAY WE HAVE 11564 37 CASES AROUND THE WORLD OF 11565 THIS DISORDER. 11566 WE HAVE A COMMUNITY, DEDICATED 11567 TO TACKLING UNDERSTANDING AND 11568 TREATING THAT DISORDER. 11569 ALL THAT HAS COME AS CONSEQUENCE 11570 OF SHARING DATA. 1157THROUGH ENGAGEMENT WITH THAT 11572 COMMUNITY I SHIFT MY RESEARCH 11573 COMMUNER SCIENCE TO BIOLOGY. 11574 MY HOME INSTITUTION OF NEW YORK 11575 CITY EVEN GAVE A SEEDLING GRANT 11576 TO DEVELOP A PLATFORM FOR 11577 THERAPEUTICS INTO THIS DISEASE 11578 SO THESE ARE LONG TERM 11579 CONSEQUENCES WHAT CAN HAPPEN 11580 WHEN WE ALLOW DATA TO BE SHARED 1158BROADLY. 11582 WHAT I HAVE ALSO SEEN FIRSTHAND 11583 HOW NOT SHARING DATA CAN 11584 DRASTICALLY IMPACT PATIENTS. 11585 I STILL DON'T HAVE ACCESS TO MY 11586 OWN ECTOME, BECAUSE IRB MIGHT 11587 FEAR I HURT MYSELF WITH IT EVEN 11588 THOUGH THAT'S A TOOL TO SAVE MY 11589 SON'S LIFE. 11590 THIS IS NOT EWE NEED TO ARGUE -- 1159THERE'S A LOT OF PEEP BECAUSE 11592 THEY CAN'T GET ACCESS TO DATA 11593 HAVE TO RECREATE THAT DATA AT 11594 THEIR OWN EXPENSE. 11595 BECAUSE WE HAVE TO MAKE 11596 PUBLICATION THERE WAS A YEAR 11597 LONG LAG BETWEEN DISCOVERY OF 11598 DISEASE AND FINDING THAT SECOND 11599 PATIENT AND LAUNCHING THE 11600 COMMUNITY WHICH IS TACKLING THE 1160DISORDER. 11602 SO I DON'T KNOW DUMPING ON TO A 11603 BLOG IS BLOG IS A SCALABLE MODEL 11604 FOR SUCCESS. 11605 SHARON TERRY'S, I THINK THAT'S 11606 AN EXCELLENT SYSTEM FOR LETTING 11607 PARTICIPANT FIND HOW MUCH 11608 CONTROL THEY WANT OVER THEIR 11609 DATA. 11610 IN THE END, THOSE GREAT eRISK 1161ARE NOT THE PATIENT. 11612 THE GREATEST RISK FROM DATA 11613 SHARING ARE THE SCIENTISTS 11614 SHACKLED THE A PUBLICATION GRANT 11615 TENURE SYSTEM THAT NOT ONLY 11616 FAILS TO REWARD SHARING DATA BUT 11617 PUNISHES THOSE THAT HAVE A MORAL 11618 COURAGE TO DO SO. 11619 THANK YOU. 11620 >> EXCELLENT POINT AS ACADEMIC 1162DEALING WITH TENURE ISSUES I 11622 AGREE. 11623 ROB, YOU I DON'T KNOW IF YOU 11624 SPEAK FOR AUTISM SPEAKS BUT YOU 11625 DEALT WITH UNIQUE ISSUES GETTING 11626 PEOPLE TO SHARE PERSONAL THINGS 11627 IN A CONTROVERSIAL AREA OF 11628 SCIENCE RIGHT NOW WHERE THERE 11629 ARE CHARGED CAMPS BUT YOU HAVE 11630 BEEN ABLE TO GET THOUSANDS OF 1163PATIENTS TO PARTICIPATE TO SAY 11632 WHAT ALLOWED YOU SUCCEED THERE 11633 THAT WE NEED TO LEARN FROM THAT? 11634 AS AN AUTISM SPEAK 11635 REPRESENTATIVE? 11636 >> WE HAVE A VERY MOTIVATED 11637 COMMUNITY CERTAINLY AND 11638 INTERESTING TO GO BACK AND LOOK 11639 AT HOW THE NATURE OF THE 11640 CONSENSUS INVOLVED SINCE 1164COLLECTING SAMPLES. 11642 MOST OF MY LEARNINGS IN THIS 11643 AREA, MOST OF WHAT I'LL SHARE 11644 THROUGHOUT THE CONVERSATION 11645 COMES FROM OUR OWN EXPERIENCES 11646 WITH THE PROGRAM WE CALL MISSING 11647 PROJECT. 11648 THIS SIMPLY IS A PROGRAM TO 11649 BUILD ONE OF THE LARGEST 11650 DATABASES OF COMPLETE GENOMIC 1165SEQUENCING INFORMATION IN THE 11652 AUTISM FIELD, WHOLE GENOMES NOT 11653 EXOMES OR ANYTHING LOWER THAN 11654 THAT. 11655 WE BENEFIT FROM THIS BECAUSE WE 11656 HAVE HAD OVER A DECADE OF WORK 11657 COLLECTING SAMPLES FROM THE 11658 COMMUNITY, NOT JUST INDIVIDUALS 11659 WITH AUTISM BUT THE ENTIRE 11660 FAMILY SO WE HAVE MORE CONTROL 1166GENOMES IF YOU WILL THAN 11662 AFFECTED INDIVIDUALS. 11663 AND THIS WOULD NOT HAVE BEEN 11664 POSSIBLE WITHOUT GREAT 11665 PARTNERSHIP WITH NATIONAL 11666 INSTITUTES OF MENTAL HEALTH WHO 11667 HELP BUILD REPOSITORY BUT WE 11668 HAVE OVER THE PAST YEAR BUILT A 11669 DATABASE PARTNERING WITH GOOGLE, 11670 THIS IS AN EXEMPLAR PROGRAM HOW 1167THEY LIKE TO DEVELOP A BUSINESS 11672 FOR GENOMIC DATA STORAGE. 11673 THE IDEA HERE REALLY IS TO 11674 ADDRESS THOSE SHACKLES IF YOU 11675 WILL, DISRUPT THE MODEL OF 11676 ACCESS TO GENETIC DATA. 11677 FUNDING SEQUENCING OF SPAMS 11678 WITHOUT THE SKIN IN THE GAME 11679 NEEDING TO PUBLISH OR JUSTIFY 11680 THAT. 1168SO 10,000 GENOMES IN THE 11682 DATABASE BY FIRST QUARTER NEXT 11683 YEAR, ACTUALLY AROUND 4,000 11684 SEQUENCES WE'RE WELL ON THE WAY 11685 TO DOING THIS. 11686 BUT I CAN TELL YOU IT HAD BEEN 11687 QUITE A JOURNEY. 11688 THE TECHNICAL SIDE ISN'T AS 11689 DIFFICULT AS YOU THINK DISEASE 11690 WORKING WITH A PARTNER LIKE 1169GOOGLE BUT IT BEEN LEGAL AND 11692 ETHICAL DIMENSIONS OF TRYING TO 11693 BUILD ACCESS POLICY THAT OPENS 11694 UP AND LEVELS THE PLAYING FIELD 11695 FOR RESEARCH COMMUNITY. 11696 AND I SAY SOME OF THE MODELS 11697 BEYOND JUST THE LEARNINGS WE'RE 11698 HAPPY TO SHARE AS WE PARTNERED 11699 TO THE ALLIANCE FOR GENOMICS AND 11700 HEALTH, AMAZING PLATFORM WORKING 1170HARD TO DEVELOP TOOLS AND 11702 POLICIES TO DISRUPT THE SPACE 11703 AND OPEN SHARING OF DATA AND I 11704 ENCOURAGE FOLKS TO LOOK AT THE 11705 WORK PRODUCT OF THAT ALLIANCE AS 11706 WE HAVE DRAWN ON THOSE. 11707 I THINK I WOULD ECHO STATEMENTS 11708 MADE EARLIER, THERE IS A NEED 11709 FOR OUTREACH TO IRBs WHO MAY 11710 NOT QUITE UNDERSTAND WHERE WE 1171ARE IN THE EVOLUTION OF THE 11712 TECHNOLOGIES AROUND SHARING AND 11713 THE PRIVACY AND SECURITY THAT 11714 ARE OUT THERE. 11715 BUT I THINK IF WE RUN INTO ONE 11716 CHALLENGE ALONG OUR, IT'S 11717 EDUCATION -- THE BURDEN OF 11718 EDUCATING IRB ON WHAT'S POSSIBLE 11719 NOW AND INTERPRETING THE VARIOUS 11720 CONSENT IN THE PAST THAT HAVE 1172BEEN USED TO BRING SAMPLES INTHE 11722 OUR O DATABASE. 11723 WE HAVE A RESEARCH PORTAL THAT 11724 WILL LAUNCH IN A FEW WEEKS. 11725 THE GREATst ACHIEVEMENT WILL 11726 BE THE IMMUNITY FOR TALL AFTER 11727 THAT. BEYOND THE RETURNING OF 11728 INCIDENTAL FINDINGS THERE'S 11729 OBLIGATION TO RETURN GENOMIC 11730 DISCOVERY TO KEY RESEARCH 1173PARTNER IN THIS, IT'S NOT EASY 11732 BUT TECHNICALLY CREATING WAYS 11733 FOR LAY PEOPLE TO INTERACT WITH 11734 THE GENOMES IS GOING TO BE 11735 TRICKY. 11736 BUT CONNECTING FAMILIES WHO ARE 11737 SHARING THE SAME GENETIC AT THIS 11738 COVERRY WITH ONE ANOTHER IS 11739 LOFTY BUT IMPORTANT GOAL FOR US. 11740 >> WHO HAS ACCESS, I THINK IN 1174OUR CONVERSATION EARLIER, WHO 11742 HAS PLANNED ACCESS TO THE DATA 11743 SET IN 11744 >> OUR GOAL WITH THE PROJECT IS 11745 LITERALLY TO ACHIEVE THIS LEVEL 11746 OF ACCESS, YOU COME TO THE 11747 DATABASE, YOU'RE PRESENTED WITH 11748 A POP UP WINDOW. 11749 YOU SELF-IDENTIFY YOURSELF AS 11750 SOMEONE WITH A VALID QUESTION TO 1175ASK OF THE DATA AND AGREE NOT TO 11752 DO EVIL WITH THE DATABASED ON 11753 TERMS PRESENTED THERE. 11754 YOU CHECK A BOX AND YOU'RE IN. 11755 THAT IS VERY AMBITIOUS, WE 11756 UNDERSTAND BUT ONE THING THAT 11757 MADE THIS POSSIBLE IN OUR EARLY 11758 CONVERSATION WITH I RBs IS IN 11759 ADDITION TO HAVING ALL OUR DATA 11760 ALREADY DEIDENTIFIED IN ADDITION 1176TO LEVEL OF SECURITY IN GOOGLE 11762 CLOUD, WE DON'T ALLOW 11763 DOWNLOADING OF DATA. 11764 WE CREATE A DATABASE WHERE ALL 11765 THE DATA LIVES THERE, 11766 INDIVIDUALS BRING INNOVATION AND 11767 IDEAS AND QUESTIONS THROUGH THAT 11768 DATABASE AND PROVIDED ALL THE 11769 TOOLS AND COMPUTE RESOURCES 11770 NECESSARY TO CRUNCH AN STATE 1177VISUALIZE THAT DATA IN WHATEVER 11772 WAY THEY WANT, USING TURNKEY 11773 SOLUTIONS CODE YOUR WAY THROUGH 11774 A COMMAND LINE AND RECALL EVERY 11775 VARIANT BUT YOU CAN'T WALK AWAY 11776 WITH THAT DATA. 11777 IN THAT CONTEXT ONE ARGUES THIS 11778 IS HUMAN RESEARCH, PROGRESSIVE 11779 ARGUMENT OUT THERE, AND MAY 11780 ALLOW THE KIND OF OPEN ACCESS 1178FOLKS PARTICULARLY FAMILIES ARE 11782 INTERESTED IN SEEING HAPPEN. 11783 >> YOUR EXPERIENCE AS FOUNDER 11784 AMONG INITIATIVES YOUR 11785 INVOLVEMENT ON THE OTHER SIDE AS 11786 WELL WITH NCI AND A LOT OF 11787 ORGANIZATIONS. 11788 WHAT OPEN ACCESS WHAT DATA 11789 SHARING EXPERIENCES HAVE YOU HAD 11790 TO BRING TO THE THIS EFFORT TO 1179SAY MAKE SURE WE DO X IF YOU 11792 TRULY WANT TO GET PEOPLE 11793 INVOLVED FROM A DATA SHARING 11794 PERSPECTIVE. 11795 >> TECHNOLOGY ALWAYS FAILS ME. 11796 I JUST FIRST I'M FULL TIME 11797 VOLUNTEER, COUPLE OF NCI 11798 ADVISORY COMMITTEE I HAVE BEEN 11799 ON STUDY SECTION, RESEARCH 11800 COMMITTEES, I DEAL EVERY DAY 1180WITH PATIENTS WALKING THEM 11802 THROUGH WHAT IS IT LIKE, HOW 11803 AFRAID ARE YOU, HOW CAN I HELP. 11804 I'M PASSIONATELY INTERESTED IN 11805 EFFICACY OF CLINICAL RESEARCH. 11806 THE MIND SET WITH MY DEEP SEE 11807 HAT. 11808 NATIVE AMERICAN, THERE IS HUGE 11809 UNDERSERVED COMMUNITY SCIENTIFIC 11810 LITERACY THERE VERY LOW. 1181SO WHEN I GO HOME AND I TALK 11812 ABOUT THIS STUFF, PEOPLE ARE 11813 LIKE IT'S ORGANIZED HOW? 11814 MY DATA IS STUCK THEY THINK THEY 11815 OPEN MY DATA. 11816 WHO GETS THAT DATA? 11817 IT'S THERE FOR THE PUBLIC GOOD 11818 I'M LIKE NO RESEARCHER WHO IS 11819 RUNNING THE STUDY. 11820 THEY SAY WELL, NO IT BELONGS TO 1182ME S THAT'S THE MIND SET I BRING 11822 TO THESE DISCUSSIONS, BECAUSE I 11823 THINK THAT MOST PATIENTS BELIEVE 11824 THEIR PARTICIPATION EVEN IN 11825 CLINICAL CARE WILL HELP OTHER 11826 PEOPLE. 11827 GETTING PEOPLE TO SHARE DATA IS 11828 ALMOST IMPOSSIBLE UNLESS THE 11829 FUNDING AGENCIES INCENTIVIZE IT. 11830 SYSTEM INCENTIVIZES IT AND I 1183SEEM PUBLIC AND PRIVATE, THAT'S 11832 THE PROBLEM. 11833 THERE ARE COUPLE OF EXAMPLES I 11834 THINK THAT ARE INTERESTING, 11835 PROJECT DATA SPHERE WAS DONE BY 11836 CEO ROUND TABLE, IT INVOLVES 11837 SHARING THE COMPARATOR ARM, OF 11838 PHASE 3 CANCER TRIALS INDUSTRY 11839 FUNDED AND PUBLICLY FUNDED IT IT 11840 TOOK LITERALLY YEARS TO GET 1184PEOPLE TO AGREE TO DO SOMETHING 11842 LIKE THIS. 11843 BUT THEY RECENTLY HAD A PROSTATE 11844 DATA CHALLENGE COME UP WITH 11845 IDEAS AND SUBMIT THEM, THEY HAVE 11846 OVER 300 FOR THE PROSTATE CANCER 11847 ARM. 11848 SO IT IS THE POSSIBLE TO DO IT. 11849 PATIENTS EXPECT IT, PATIENTS 11850 WANT IT, THEY'RE MUCH LESS 1185CONCERNED THOUGH MY 26-YEAR-OLD 11852 SON TALKING P MENTION CLONE ME. 11853 I SAID THEY'LL CLONE YOU? 11854 YOU THINK YOU'RE THAT SPECIAL? 11855 OKAY. 11856 I THINK THERE'S MORE FEAR ABOUT 11857 DATA SHARING THE AMOUNT OF FEAR 11858 ON PATIENT SIDE IS LOWER THAN 11859 WHAT PEOPLE THINKFUL 11860 >> HOW DO YOU RECONCILE YOU HAVE 1186MOTIVATED COMMUNITIES SOMETIMES 11862 DISEASE SPECIFIC SOMETIMES 11863 COMMUNITY SPECIFIC. 11864 NOT ALWAYS PEOPLE WHO ARE ILL. 11865 THAT ARE VERY MOTIVATED TO SHARE 11866 DATA AS MUCH AS POSSIBLE. 11867 WE HAVE HEARD ONE MODEL WHICH IS 11868 A ALL OR NONE CONSENT, YOU 11869 IMAGINE A BIT MORE DRIVEN 11870 APPROACH THIS VERSUS THAT NOT 1187PERFECTLY A LA CARTE. 11872 PEOPLE WHO GET DISTRIBUTED 11873 DIRECT FROM CONSUMER ENTITY, 11874 THAT AN ENTITY YOU FOUND AS 11875 SHARING AS IT OR IS THAT A 11876 COMMUNITY YOU THINK WOULD NEED 11877 DIFFERENT STRATEGYIES TO GET 11878 THEM TO SAY ALL OR NONE GO FOR 11879 IT. 11880 >> I WORK IN THE COMMUNITY AND 1188NEED TO COMPARE PEOPLE WITH 11882 ADDICTION TO PEOPLE WHO DON'T 11883 HAVE ADDICTION. 11884 I RECRUIT 25-YEAR-OLD WHOSE HAVE 11885 NO ILLNESS. 11886 ACTUALLY LAST SUMMER I 11887 HIGHLIGHTED A STUDY OF A 11888 THOUSAND SUBJECTS. 11889 A FEW YEARS AGO I SAID PILOT 11890 WITH A THOUSAND, THAT WOULD 1189AMAZE ME. 11892 BUT I RECRUITED A THOUSAND 11893 SUBJECTS WITH GENETIC DATA USING 11894 23 AND ME. 11895 IT IS COLLIEIA CERTIFIED. 11896 I DOWNLOADED THEIR GENETIC DATA, 11897 GOT IT BACK IN FOUR WEEKS, THEY 11898 SAY EIGHT WEEKS BUT SO GOOD IT 11899 COMES BACK IN FOUR WEEKS. 11900 GREAT DATA THE, COMPARED WITH 1190OTHER GENETIC DATA AND I HANDED 11902 OVER TO THE PARTICIPANTS. 11903 SO I THINK PEOPLE ARE READY TO 11904 SHARE, I'M READY TO SHARE. 11905 IT'S TIME TO GO FOR IT. 11906 I'M NOT SCARED. 11907 >> DIDN'T HAVE INCENTIVES OR 11908 COMPENSATION. 11909 WE PAID $25 TO COME IN COMPANY 11910 STATION FOR TIME BECAUSE THEY 1191FILLED A SURVEY. 11912 A QUESTIONNAIRE WE ASKED ABOUT 11913 SUBSTANCE USE. 11914 AND THEIR COMPENSATION WAS ALSO 11915 THEY GOT THE 23 AND ME RESULTS. 11916 SO BOTH INCENTIVES. 11917 >> AND THE AUTISM SPEAKS. 11918 >> I HAVE BEEN THINKING ABOUT 11919 THIS PROBLEM EVER SINCE THE 11920 INITIAL PMI OBJECTIVES HOW TO 1192LAY OUT HOW WE CAN RECRUIT 11922 TYPICALS. 11923 IT'S BEEN SINCE WE TALKED IN 11924 LEAD UP TO THIS THAT I HAVE BEEN 11925 THINKING ABOUT THIS, OUR 11926 APPROACH FROM DAY ONE WITH AGREE 11927 REPOSITORY, THE REPOSITORY 11928 DIGITIZING AND PUT INTO THE 11929 MISSION DATA BATES IS FOCUSED ON 11930 FAMILIES, FOCUSED ON AN 1193INDIVIDUAL PRO BAND WHO HAS 11932 AUTISM, PERHAPS SIBLING WITH OR 11933 WITHOUT AUTISM AS WELL AND 11934 THEY'RE UNEFFECTED PARENTS. 11935 OUR DATABASE ITSELF IS MORE 11936 POPULATED WITH CONTROLS THAN 11937 THEY ARE WITH AFFECTED 11938 INDIVIDUALS, THEY ARE VERY HAPPY 11939 TO BE PARTICIPATE IN THE 11940 RESEARCH BECAUSE THEY UNDERSTAND 1194THE POWER FOCUSING ON FAMILY 11942 WHAT RATHER THAN CASE CONTROL 11943 OFFERS. 11944 THIS MAYBE A VEHICLE TO HELP 11945 DELIVER MORE THE TYPICAL -- I 11946 THINK THE SECOND QUESTION THAT 11947 MIGHT BE OF INTEREST TO THAT 11948 PARENT OTHER THAN TRYING TO 11949 UNDERSTAND IS THERE GENETIC 11950 STORY BEHIND AUTISM JOURNEY, 1195WHAT'S THE STORY BEHIND WHY WE 11952 DON'T HAVE IT. 11953 CAN THAT BE A VALUE TO THE 11954 GREATER POPULATION. 11955 IT COULD BE THROUGH PARTNERSHIPS 11956 WITH ORGANIZATIONS THAT ARE 11957 FOCUSED ON FAMILY MULTIPLEX OR 11958 SIMPLEX FAMILIES THAT ONE COULD 11959 ACCUMULATE A GREAT NUMBER OF 11960 TYPICAL CONTROLS OR A MUCH 1196LARGER COHORT ASSUMING YOU COULD 11962 WORK OUT THE STANDARDIZATION OF 11963 THE CONSENSUS AND SUCH NEED FOR 11964 THAT. 11965 >> THE COMMUNITIES YOU PRESENT 11966 AND LEARN FROM, WHERE DO THEY GO 11967 IF IT'S NOT A KIN DREAD SPIRIT 11968 F. WE'RE NOT DEALING WITH HEALTH 11969 SYSTEMS OR WITH PROVIDERRER 11970 NETWORKS WE'RE DEALING WITH 1197DIRECT PARTICIPANTS CONNECT 11972 THIRD PARTY TO THE NIH IS IT A 11973 NOT FOR PROFIT, ACT KEPTIC 11974 MEDICAL CENTER WHO FEELS 11975 COMFORTABLE BEING THE CENTRAL 11976 REPOSITORY OR THE SHARER OF THIS 11977 DATA FROM YOUR COMMUNITY 11978 PERSPECTIVE? 11979 >> WHERE THE DATA LIVES IS LESS 11980 IMPORTANT THAN WHO IS IN CHARGE, 1198THAT'S WHERE GOVERNANCE MATTERS, 11982 IT NEEDS TO BE MULTI-STAKEHOLDER 11983 YOU HAVE HAVE TRUSTED PEEP AT 11984 THE TABLE. 11985 PEOPLE SAY THE NIH SURVEY MADE 11986 ME LAUGH BECAUSE I WONDER IF 11987 PEOPLE UNDERSTOOD THAT NIH IS 11988 THE GOVERNMENT. 11989 I MEAN I RUN INTO THINGS LIKE 11990 THAT THAT'S WHERE GOVERNANCE AND 1199SUBSTANTIVE INVOLVEMENT AND 11992 TRANSPARENCY IS CRITICAL. 11993 >> I WILL ECHO THAT. 11994 NOT WHO THEY'RE GOING TO SHARE 11995 WITH, IT'S ABOUT TRUST. 11996 IN OUR COMMUNITY, THE PATIENT 11997 COMMUNITY ITSELF HAS THE BEST 11998 REPOSITORY OF ALL PATIENT DATA. 11999 AND THERE'S TRUST AMONG THE 12000 PATIENT COMMUNITY, THE LEADERS 1200OF THAT COMMUNITY WILL MAKE GOOD 12002 DECISION WHEN WE SHARE IT AND 12003 WITH WHOM WE SHARE FOR THE 12004 BENEFIT OF THE PATIENT. 12005 THERE'S A SENSE WE SHARE THAT 12006 DATA WE'RE SHARING BECAUSE WE'RE 12007 TRYING TO MAKE A DIFFERENCE 12008 TOWARDS UNDERSTANDING AN 12009 TREATMENT BUT ALSO HAVING 12010 CONTROL TO THAT TRUST IS 1201ENABLED. 12012 >> I ONLY ADD SINCE I HAVE 12013 INTERACTED WITH FAMILIES IN THE 12014 AUTISM COMMUNITY 12015 >> ZERO CONCERN ABOUT SEEING 12016 DATA EXPLOITED IF INDIVIDUALS 12017 EXPLOITING THAT GETTING RICH 12018 DEVELOPING TREATMENTS THAT I 12019 MEAN PROVE OUTCOMES FOR THEIR 12020 FAMILY MEMBERS ARE QUITE 1202COMFORTABLE WITH THAT, HOW FAR, 12022 THE GROUND RULES WHICH THAT DATA 12023 IS ACCESS AND EXPLOITED ARE VERY 12024 DIFFERENT MATTER. 12025 SO THE TRUST ASPECT WHO IS OWN 12026 ACCESS TO NOT SO MUCH 12027 EXPLOITATION OF THAT DATA THAT 12028 IS CONCERN. 12029 IN THAT REGARD, THERE IS 12030 SIGNIFICANT LEVEL OF COMFORT FOR 1203ANYONE WHO DOESN'T HAVE SKIN IN 12032 THE GAME SO TO SPEAK FROM 12033 EXPLOITATION POINT OF VIEW. 12034 SO PATIENT GROUPS, NIH, WOULD 12035 BOTH FALL 12036 >> THAT CATEGORY. 12037 -- FALL IN THAT CATEGORY. 12038 >> SO THE DATA FROM STUDIES 12039 DEPOSITED IN DB GAP AND I HAVE 12040 BEEN PLEASED WITH DB GAP, I WAS 1204THE FIRST INVESTIGATOR WHO HAD A 12042 DATA BREECH REGARDING DB GAP 12043 BECAUSE THERE'S EMBARGO PERIOD 12044 AS INVESTIGATOR I HAD SOLE 12045 ACCESS FOR A PERIOD OF TIME AND 12046 ANOTHER INVESTIGATOR ACTUALLY 12047 BREECHED THAT. 12048 AND PUBLISHED THE DATA IN MY 12049 STUDY PRIOR TO END OF THE 12050 EMBARGO PERIOD SO THOUGH I AM 1205THE PERSON WHO HAD THAT OCCUR 12052 TO, THERE WAS NICE ARTICLE IN 12053 SCIENCE ABOUT THIS, FIRE MAIN 12054 FULLY COMMITTED TO DATA SHARING. 12055 AND WHICH I THINK IS REALLY KEY. 12056 I ACTUALLY WOULD ARGUE THAT MY 12057 CAREER HAS BEEN BETTER BECAUSE 12058 OF DATA SHARING AND WE HAVE 12059 MECHANISMS TO ENCOURAGE DATA 12060 SHARING. 1206AT THIS POINT I WILL BE 12062 CONTROVERSIAL HERE, THE DATA 12063 SHARING COMPONENT OF GRANTS IS 12064 NOT CONSIDERED IN THE SCIENTIFIC 12065 EVALUATION. 12066 WE -- THIS IS SOMETHING AGAIN WE 12067 CAN THINK ABOUT WITH CSR, SHOULD 12068 THE DATA SHARING BE CONSIDERED 12069 PART OF THE SCIENTIFIC VALUE? 12070 IT SHOULD DB GAP ACTED QUICKLY 1207WHEN THEY RECOGNIZED THE 12072 EMBARGO. 12073 I KNOW OF NO BREECH OF PATIENT 12074 DATA INAPPROPRIATELY WITH DB GAP 12075 THAT'S BEEN GOING MANY YEARS AND 12076 THAT'S BEEN A GREAT EXAMPLE. 12077 MY DATA SET IS REQUESTED BY OVER 12078 300 INDEPENDENT INVESTIGATORS. 12079 I HAVE NO SAY IN IT AND IT'S 12080 GREAT IT'S BEING UTILIZED. 1208THERE IS A POLICY IN PLACE. 12082 SO THE QUESTION WAS WHEN THERE 12083 WAS THE BREACH OF THE DATA BY 12084 INVESTIGATOR, DID SOMETHING 12085 HAPPEN? 12086 YES, IT ACTUALLY HAPPENED OVER 12087 THE LABOR DAY WEEKEND. 12088 SEVERAL YEARS AGO AND NIH WORKED 12089 OVER THAT WEEKEND TO INITIATE 12090 CERTAIN ASPECTS AND DR. COLLINS 1209WROTE AN EDITORIAL AFTER THAT 12092 AND SEVERAL THINGS CHANGED. 12093 AGAIN I'M SAD IT HAPPENED. 12094 BUT THINGS WORK OUT WELL. 12095 WE NEED TO MAKE SURE THERE'S 12096 PROTECTIONS IN PLACE, IF 12097 ANYTHING HAPPENS TO THESE DATA 12098 SETS, INAPPROPRIATELY, THAT 12099 SOMETHING HAPPENS TO THOSE 12100 PEOPLE. 1210>> OUT OF RESPECT FOR TIMING FOR 12102 THE AFTERNOON WE HAVE ABOUT 25 12103 MINUTES LEFT, WE'RE THE LAST 12104 SESSION FOR YOU GET HOME SO 12105 WE'LL OPEN TO QUESTIONS AT THIS 12106 POINT. 12107 PEARL, DO YOU WANT TO START IN 12108 >> SORT OF A QUESTION AND A 12109 COMMENT. 12110 I COULDN'T AGREE MORE WITH BROAD 1211CONSENT BEING THE WAY TO GO AND 12112 BROAD DATA SHARING. 12113 BUT I WOULD NOTE, I LIVE IN THE 12114 IRB WORLD SO I'M LIKE THE VICE 12115 PERSON AND THE OTHER WAY I 12116 GUESS. 12117 THE DIFFICULTY EXISTS WHERE THAT 12118 DATA GOES. 12119 THE TRANS-NIH BIOMEDICAL 12120 INFORMAT CYST COORDINATING 1212COMMITTEE, THERE'S 65 SEPARATE 12122 REPOSITORIES LISTED. 12123 THERE'S SOME COMMONNALTY OF 12124 RULES, THERE IS NOT ROUTINE 12125 STANDARDIZATION. 12126 SO I THINK LAURA THE WAY YOU 12127 DESCRIBE HOW CONSENT KEPT 12128 CHANGING, THAT'S WHAT WE'RE 12129 GETTING FROM ICs AT NIH. 12130 AND SO I THINK WHAT WE NEED TO 1213DO IS TO TAKE ADVANTAGE OF THIS 12132 BROAD RESOURCE, WE NEED TO HAVE 12133 INTEROPERABILITY AND GET 12134 CONSISTENCY. 12135 SO THAT MAYBE IS ANOTHER THING 12136 TO COME OUT OF THIS. 12137 >> WE ESTABLISH THAT IRB 12138 APPLICATION FOR ONCE WE DON'T 12139 LET UNIVERSITY OF MICHIGAN SUPER 12140 SMART LAWYERS COME UP WITH THEIR 1214ADDITIONAL CLAUSE AND EACH 12142 ENTITY HAS THE TO SHOW THEIR 12143 UNIQUELY INTELLIGENT IN 12144 PARTICULAR WAY. 12145 THIS MAYBE THE POLITICAL FORCE 12146 OF THIS ORGANIZATION EFFORT MAY 12147 ALLOW US TO MAKE PROGRESS. 12148 QUESTION IN THE BACK. 12149 >> (INAUDIBLE) FROM FORCE. 12150 I JUST WOULD ASK ROBERT RING TO 1215CLARIFY WITH REGARD TO THE 12152 COMMENT ABOUT PATIENTS DON'T 12153 CARE IF SOMEONE MAKES THE MONEY 12154 OR EXPLOITS IT AS LONG AS IT 12155 HELPS FAMILIES AND CIRCLE BACK 12156 TO THE IDEA MAKING SURE THE 12157 TECHNOLOGY DEVELOPED OFF OF 12158 PEOPLE EEL'S DATA IS ACCEPTABLE 12159 TO THEM AND DOESN'T DRIVE COST 12160 OF TECHNOLOGY UP BECAUSE THAT 1216WILL DO A LOT TO ERODE PUBLIC 12162 TRUST. 12163 >> FAIR POINT. 12164 WHAT I MAY HAVE FALLEN SHORT ON 12165 CHARACTERIZING IS REALLY MORE 12166 THAT RISK BENEFIT EQUATION, NOT 12167 TO SAY IT'S FULLY IN FAVOR OF 12168 ONE, NOT A ZERO SUM REALITY BUT 12169 MORE OFTEN THAN NOT, AS I HAVE 12170 EXPERIENCED IT WITHIN OUR 1217COMMUNITY, THERE'S A GREAT 12172 INTEREST AND GREAT TOLERANCE FOR 12173 EXPLOITATION OF DATA IF IT IS 12174 GOING TO GENERATE IMPROVED 12175 OUTCOMES AT THE END OF THE DAY. 12176 IT'S NOT TO SAY THAT ONE ENTERS 12177 INTO THAT RECKLESSLY WITHOUT ANY 12178 CONCERN FOR HOW THE PROGENY OF 12179 THAT ACCESS REDUCTION OF 12180 KNOWLEDGE TO FROM AT THIS IN 1218FORM OF PATENT CREATED FROM HE 12182 CAN PLOYATION OF DATA IS NOT 12183 MANAGED APPROPRIATELY. 12184 THERE'S ONLY SO MUCH ONE CAN DO 12185 TO ENFORCE THOSE DOWNSTREAM 12186 ACTIONS. 12187 WHAT WE WOULD LIKE TO ACHIEVE IS 12188 MORE A LEVEL PLAYING FIELD TO 12189 BEGIN WITH ON ACCESS TO DATA. 12190 THAT THIS POINT THE ACCESS IS 1219NOT UNIFORM AND OFTENTIMES DELAY 12192 IN SHARING OF GENETIC DATA THAT 12193 OFTENTIMES SLOWS THE PROGRESS OF 12194 RESEARCH. 12195 >> CAN I ASK A QUESTION? 12196 >> WE HAVE SOMEBODY WAITING. 12197 >> THIS IS MEGAN O'BOYLE, F IF I 12198 COULD TWEET I WOULD TWEET BUT I 12199 DON'T KNOW HOW. 12200 THIS IS THE BEST PANEL -- CATHY 1220WILL TEACH ME LATER. 12202 I'M AMAZED HOW CALM THIS ROOM 12203 IS. 12204 EVERYBODY AT THAT TABLE SAYS 12205 SHARE OFTEN AND ALL AND NOBODY 12206 FAINTED NOBODY DIED, EVERYBODY 12207 IS STILL IN THE ROOM SO THIS IS 12208 A GOOD SIGN. 12209 P MIRK IS THE OPPORTUNITY FOR 12210 OUR NATION TO SAY DOESN'T MATTER 1221WHAT WE HAVE DONE, DOESN'T 12212 MATTER WHAT THE RULES WITH WERE, 12213 DOESN'T MATTER WHAT THE IRBs 12214 USE TO SAY, THIS IS TIME FOR 12215 RESTART. 12216 WE WILL TRY IT THIS WAY AND SEE 12217 IF IT WORKS. 12218 I THINK IT WILL A LOT OF PEOPLE, 12219 THERE'S THE OLD MODEL THEY CAN 12220 USE FOR WHAT THEY WANT TO DO. 1222IN TERMS OF THE HEALTHY 12222 PATIENTS, THE ONLY DIFFERENCE 12223 BETWEEN PATIENT AND RESEARCHER 12224 IS DIAGNOSIS. 12225 BUT I WOULD SAY IF ANYBODY IN 12226 THIS DOESN'T HAVE A RELATIONSHIP 12227 WITH SOMEBODY THAT HAS CONDITION 12228 CHRONIC RARE COMMON THEY NEED TO 12229 GET OUT MORE CLEARLY. 12230 I HAVE A MOTHER THAT PASSED AWAY 1223AND SHE HAD EARLY ON DEMENTIA, I 12232 HAVE A CHILD WITH A SEVERE 12233 GENETIC SYNDROME AND I HAVE KIDS 12234 THAT HAVE EXERCISE ON SET ASTHMA 12235 S IT RUNS THE GAMUT SO I DON'T 12236 THINK FINDING HEALTHY PEOPLE 12237 THAT HAVE INCENTIVE TO BE 12238 INVOLVED SHOULD BE SOMETHING WE 12239 HAVE TO WORRY TOO MUCH ABOUT. 12240 IF I DIDN'T SAY IT BEFORE, 1224RETURNING DATA IS THE BEST 12242 REWARD YOU CAN GIVE THEM. 12243 >> I WAS AT AN IOM MEETING IN 12244 THE FALL WHERE I OFTEN FALL OFF 12245 MY CHAIR, ETHICAL RESEARCHER IN 12246 THE PANEL AT THE FRONT WHO 12247 BASICALLY SAID WE HAVE TO 12248 PROTECT PATIENTS FROM THEIR OWN 12249 DATA. 12250 THAT IS THE MIND SET, I DON'T 1225THINK THOSE PEOPLE ARE IN THIS 12252 ROOM, SO THAT'S THE PROBLEM. 12253 I WILL TOSS OUT T THE LACK OF 12254 LEADERSHIP FROM OHARP IS A REAL 12255 PROBLEM AND REAL ISSUE. 12256 ONCE I FIGURE HOW CONVOLUTED 12257 THAT WAS, I WAS REALLY ANGRY. 12258 CALM NOW BUT I WAS ANGRY. 12259 >> THE IRB THE VULNERABLE 12260 POPULATIONS TRYING TO PROTECT 1226THEM, WE'RE HARMING THAT, LET'S 12262 BE CLEAR. 12263 BY CALLING THEM VULNERABLE IT'S 12264 PATERNALISTIC. 12265 WE UNDERREPRESENTED IN RESEARCH 12266 MAKING MORE VULNERABLE IT'S TIME 12267 TO CHANGE THAT PATHWAY. 12268 >> CAN I ADD? 12269 ONE OF THE POPULATIONS IS OFTEN 12270 NOT CONSIDERED VULNERABLE IS THE 1227MENTALLY ILL. 12272 THEY CAN'T CONSENT, THESE 12273 DIFFERENT IDEAS WE HAVE TO 12274 PROTECT IT'S A MISTAKE FOR US TO 12275 DO THAT. 12276 REALLY KNEAD TO RETURN RESULTS 12277 AND INCLUDE EVERYONE. 12278 I DON'T KNOW HOW TO DIVIDE 12279 MENTAL ILLNESS FROM MEDICAL 12280 ILLNESS. 1228THIS BORDER, I DON'T KNOW HOW TO 12282 PUT THIS BORDER DOWN AND I 12283 REALLY FEAR THAT WE WILL CUT OUT 12284 MENTAL ILLNESS FROM PMI. 12285 >> 12286 >> WE HAVE MENTAL HEALTH AND 12287 PHYSICAL HEALTH. 12288 WE ALL HAVE. 12289 >> YES, SIR. 12290 >> MEGAN SAID EVERYTHING I 1229WANTED TO SAY SO I THOUGHT OF A 12292 CONTRARIAN QUESTION TO ASK THE 12293 PANEL, IT'S VERY SERIOUS. 12294 >> YOU DON'T HAVE TO ASK A 12295 QUESTION. 12296 >> WHAT HEALTHY COHORT 12297 PARTICIPATE MAYBE WILLING TO 12298 PARTICIPATE BUT I HAVE BECOME AN 12299 ALCOHOLIC THAT MAY NOT WANT TO 12300 PARTICIPATE AND THIS IS A 1230LONGITUDINAL STUDY, HAVE WE PUT 12302 ANYTIME (INAUDIBLE) RESCINDING 12303 MY SHARING OF DATA MAYBE YOU 12304 GUYS CAN SHARE ABOUT THAT. 12305 >> I THINK INITIATIVES INCLUDE 12306 REVOCATION CLAUSE IN THERE BUILD 12307 INFRASTRUCTURE AROUND MANAGING 12308 IT AND USE OUR EXPERIENCE THE 12309 GENOMICS INITIATIVE THAT PEOPLE 12310 PULL OUT AFTERWARD AND NO ONE 1231REALLY DOES. 12312 THAT TAKES AWAY TOO MUCH ENERGY 12313 AS IT TURNS OUT. 12314 >> JUST FROM A PATIENT 12315 ENGAGEMENT STANDPOINT I WOULD 12316 LIKE TO POINT OUT THIS ROOM IS 12317 DOING BETTER THAN THAT SIDE OF 12318 THE ROOM. 12319 THEY'RE TWEETING FORWARD. 12320 WE DON'T KNOW HOW TO TWEET ON 1232THIS SIDE OF THE ROOM BUT ALSO I 12322 WOULD MAKE -- ON WHAT SHE TALKED 12323 ABOUT ON PATIENT ACCESS, A 12324 QUESTION I KNOW WE HAVE BEEN 12325 FOCUSED ON IRB AND MAYBE COMMON 12326 RULE ISSUES, HIPAA WAS ENACTED 12327 96, THE RULES CAME ON LINE, IS 12328 IT TIME TO RETHINK OR MAYBE MORE 12329 IMPORTANTLY REWRITE HIPAA THAT 12330 ALLOWS ADDITIONAL ACCESS AND 1233DATA SHARE SOMETHING 12332 >> -- SHARING? 12333 >> WE DID THAT IN 2014. 12334 >> IF I CAN JUMP IN, IT'S 12335 DEFINITELY TIME TO REWRITE 12336 HIPAA. 12337 CERTAINLY THERE ARE CASES 12338 PRIVACY CAN PROTECT PATIENTS. 12339 BUT IT CAN ALSO KILL THEM. 12340 >> WELL AND THE FACT THEY CAN DO 1234HEALTH SERVICES RESEARCH WITHOUT 12342 CONSENT, SO THEY CAN HELP 12343 HOSPITALS MAKE MORE MONEY. 12344 TO IMPROVE THE QUALITY AND 12345 QUANTITY OF CARE BUT YOU CAN'T 12346 DO ANYTHING TO HELP PATIENTS. 12347 THAT MAKES ME CRAZY. 12348 >> REAL QUICK FOLLOW-UP, NOT 12349 SHOULD WE BUT HOW SHOULD WE. 12350 >> YOU HAVE PEOPLE IN THE ROOM 1235THAT WILL HELP DRIVE THAT KATHY 12352 SAID WE'LL TALK TO THE HILL, I 12353 DON'T KNOW THAT'S THE RESPONSE I 12354 WOULD EVER GET SO ARE YOU SAYING 12355 THAT, IS GOING THE MAKE AN HOUR 12356 TOPIC OF CONVERSATION IN CLOSED 12357 SESSION TOMORROW PROBABLY. 12358 BUT IT IS WORTH NOTING WE HAVE 12359 FEWER RESTRICTIONS IF WE PUT ALL 12360 WHAT WE WANT TO DO INTO THE IRB 1236APPROVAL AND ACTUALLY ARE HAVE 12362 IRBs WILLING TO LOOK TO FUTURE 12363 AND WORK WITH US ON THIS. 12364 >> I WROTE MY FIRST MASTERS 12365 THESIS WHY HIPAA WOULD FAIL. 12366 ACTUALLY REALLY IT WAS -- AND 12367 ONE OF THE MANY THINGS THAT 12368 WE'RE ADDRESSED IN THERE WERE 12369 THE PATIENT PRIVACY ISSUES THAT 12370 PREVENTED PROTECTED RESEARCHERS 1237AND PREVENTED PATIENTS FROM 12372 BEING PARTICIPANT IN RESEARCH 12373 BEYOND DONATING THEIR 12374 INFORMATION IN EXCHANGE FOR $20 12375 GIFT CARD. 12376 HAVING SAID THAT T HIPAA UPDATE 12377 OF 2014, DID DO A LOT TO MACK 12378 THOSE CHANGES. 12379 WHILE PERTINENT TO WHAT WAS 12380 DISCUSSED WHAT I WAS ASKING 1238ABOUT IS DR. BIERUT HAD SAID SHE 12382 PROVIDED THESE THESE DATA DNA 12383 GENOMIC DATA BACK TO INDIVIDUALS 12384 THAT WERE IN HER STUDY. AT A 12385 VERY, VERY LARGE COHORT, 12386 WHATEVER THE TERM OF THE MOMENT 12387 IS, 1 MILLION, HOW MUCH -- WE'RE 12388 TALK ABOUT THE 1 MILLION COHORT 12389 WHATEVER THE TERM NOW, HOW MUCH 12390 WOULD THAT COST? 1239WHO WOULD BARE THE COST? 12392 HOW COULD WE POSSIBLY AFFORD IT 12393 WHEN WE ARE LOOKING AT 100% CUT 12394 IN REMARKSHRQ FUNDING, 30% CUT 12395 ONC, ET CETERA. 12396 >> SO I USED 23 AND ME. 12397 >> FUNDS SET ASIDE FOR PMI ARE 12398 NOT GOING TO EXTRACT EXISTING 12399 FUNDS FOR RESEARCH WITH OTHER 12400 AGENCIES AT NIH, 1240>> MOOT POINT SO GO AHEAD. 12402 >> WHO HAS DONE ANYTHING LIKE 12403 ANCESTRY.COM OR 23 AND ME? 12404 I AM AMAZED HOW THEY DO THIS 12405 EFFICIENTLY AS A BUSINESS MODEL, 12406 23 AND ME, 99 I GET THE MAILINGS 12407 THE DNA IS PROCESSED, AND THEY 12408 HAVE THEIR BEAUTIFUL WEBSITE 12409 WHERE THEY PUT IT BACK. 12410 SO INCREDIBLY EFFICIENT. 1241>> I TRY TO GET THIS FOR OUR 12412 UNIVERSITY AND WE DID. 12413 WE GOT A $50 DISCOUNT. 12414 $50 PER PERSON. 12415 >> YOU GOT A BETTER DISCOUNT 12416 THAN I. 12417 >> BECAUSE IT'S ME. 12418 >> THIS IS VERY IMPORTANT. 12419 23 AND ME CAME HERE A COUPLE OF 12420 MONTHS AGO. 1242THEY HAD A WONDERFUL WEBSITE, 12422 VERY NIMBLE AND WHAT I WANT TO 12423 KNOW THE FDA BLOCKED WHAT THEY 12424 WERE DOING SO HOW DID YOU GET 12425 AROUND THAT? 12426 >> I'M NOT GETTING AROUND THE 12427 MEDICAL CONDITIONS AT THIS 12428 POINT. 12429 THE ONLY THING THAT'S GOING BACK 12430 TO PARTICIPANTS IS THE ANCESTRY 1243STUFF AND I WILL TELL YOU, THE 12432 SUBJECTS LOVE THE ANCESTRY 12433 STUFF. 12434 THEY JUST REALLY LOVE IT. 12435 SO I ACTUALLY HAVE A ALL THE 12436 MEDICAL STUFF DAY THEY HAVE DID 12437 BEFORE. 12438 THEY DID A REALLY GOOD JOB. 12439 AND I THINK THAT WE'RE AGAIN AT 12440 THIS ISSUE OF REGULATIONS, THAT 1244THE I'M NOT INTO REGULATION BUT 12442 THE WAY THE FDA APPROVES IS ONE 12443 VARIANT AT A TIME TESTING. 12444 OPPOSED TO 3 BILLION VARIANTS 12445 TESTED, HOW DO WE GET THROUGH 12446 THAT REGULATION GOING FORWARD? 12447 >> SPERO. 12448 >> ONE OF THE REASONS WHY PEOPLE 12449 AREN'T JUMPING UP AND DOWN AND 12450 SCREAMING, MOST DISCUSSION IS 1245COUCHED IN TERMS OF PERSON OR 12452 PATIENT-CENTRIC PERMISSIONS AND 12453 APPROVALS. 12454 BACK TO TWO PREVIOUS PANEL 12455 PRESENTATIONS WE SAW A 12456 DISTINCTION BETWEEN PERSON AND 12457 COMMUNITY. 12458 AND PERSONALLY THE CULTURAL 12459 SENSE OF SELF-IS NOT 12460 INDIVIDUALISTIC AS MOST 1246COMMUNITIES IN THIS COUNTRY. 12462 AS A CONSEQUENCE, BEING 12463 DEPENDENT DOMESTIC SOVEREIGNTIES 12464 CODIFIED THAT SENSE OF SELF-SO 12465 FOR EXAMPLE, AN INDIVIDUAL 12466 TRAVEL MEMBER MAY AGREE TO 12467 PARTICIPATE AND AGREE TO USES. 12468 BUT THE COMMUNITY LEVEL THE 12469 GOVERNANCE IS MANAGED, FOR WHOLE 12470 HOST OF REASONS, THERE HAVE TO 1247BE PROVISIONS MET WITH RESPECT 12472 TO USE OF DATA INDEPENDENT OF 12473 WHAT THE INDIVIDUAL SUBSCRIBE 12474 TO. 12475 FOR EXAMPLE BAROALCOHOL STUDY IN 12476 1982, FAMOUS IN THE INDIAN 12477 COMMUNITIES WHICH EPIDEMIOLOGIC 12478 DATA CHARACTERIZED THE ALASKA 12479 NATIVE MEMBERS OF COMMUNITY AS 12480 ALCOHOLICS WITH SCREAMING 1248HEADLINE ACE CROSS THE 12482 WASHINGTON POST. 12483 AS A RESULT, THE CITY BONDS 12484 $18 MILLION TO CIVIC 12485 IMPROVEMENTS WERE -- FELL APART. 12486 WE HAVE DOZENS OF EXAMPLES OF 12487 THAT IN NATIVE COMMUNITIES WHERE 12488 THERE HAS NOT BEEN BROUGHT TO 12489 BARE THE SENSITIVITY AND 12490 APPRECIATION FOR THE 1249IMPLICATIONS OF THE USE, 12492 INTERPRETATION AND RELEASE OF 12493 DATA. 12494 SO TODAY WE'RE SEEING NOT SAME 12495 DEGREE OF EASY ACCEPTANCE OF 12496 VIEWS PRESENTED HERE. 12497 THAT'S TRUE IN MANY COMMUNITIES 12498 ACROSS THE COUNTRY SO IT'S 12499 IMPORTANT TO KEEP IN MIND 12500 BETWEEN INDIVIDUAL AND COMMUNITY 1250LEVEL UNDERSTANDING APPROVAL AND 12502 SUPPORT OF THESE KINDS OF 12503 ISSUES. 12504 Q. THAT IS SPECIFIC TO NATIVE 12505 AMERICANS. 12506 EVERY COMMUNITY IS DIFFERENT. 12507 THAT'S WHAT WE TRY TO HIGHLIGHT 12508 THIS MORNING. 12509 >> (INAUDIBLE) MOUNT SINAI. 12510 I ECHO YOUR EXCITEMENT ALL THESE 1251SHOULD WANT, EVERYBODY HAS SIX 12512 FAMILIES AND I'M EXCITED THE 12513 ROOM IS EXCITED BUT I WANT TO GO 12514 BACK AND SHINE AN EQUITY LENS ON 12515 WHAT WE TALK ABOUT AND 12516 DISCUSSIONS WE HAD EARLIER. 12517 OF COMMUNITIES, WHO DO NOT FEEL 12518 THIS IS GOING TO BE IN THEIR 12519 BEST INTEREST, WHO DO NOT FEEL A 12520 TRUST, WHO DON'T UNDERSTAND HOW 1252THIS WILL HELP THINGS DON'T HELP 12522 COMMUNITIES BEFORE. 12523 IT'S NOT PEOPLE DON'T HAVE SICK 12524 RELATIVES OR DON'T CARE, OR 12525 THEY'RE NOT LITERATE, THEY HAVE 12526 SIGNIFICANT LIFE EXPECTANCIES 12527 THAT ARE SCREAMENING THEIR HEAD 12528 OTHERWISE. 12529 AND WHETHER SO REFLECT HOW TO 12530 TAKE EXCITEMENT FROM A DIFFERENT 1253KIND OF COMMUNITY. 12532 SOMEWHERE IN HARLEM WHERE I WORK 12533 WHO MAY NOT AGREE WITH THIS AT 12534 ALL AND NOT -- AND MAKE IT SO 12535 THEY FEEL EQUALLY WELCOME IN 12536 THIS AND THAT WE CAN INVOLVE 12537 THEM IN THIS INITIATIVE. 12538 >> I LOVE TO COMMENT ON THIS 12539 BECAUSE I RECRUITED ABOUT 6,000 12540 AFRICAN AMERICANS FROM DETROIT 1254AND ST. LOUIS. 12542 I RECRUITED ALSO IN THE ST. 12543 LOUIS AREA OF WHITES WHO HAVE 12544 LOW EDUCATION ATTAINMENT. 12545 HALF THE SUBJECTS DON'T HAVE A 12546 HIGH SCHOOL DIPLOMA. 12547 IT'S JUST ASTOUNDING. 12548 AND WHAT I FIND IS ENGAGEMENT. 12549 I LOOK FORWARD TO THIS ASPECT TO 12550 ENGAGE IN MANY WAYS SO WE DO 1255SNOWBALL RECRUITMENT WHERE 12552 SOMEONE IS ENGAGED. 12553 IT GOES OUT. 12554 I THINK WE'RE GOING TO NEED TO 12555 DO INTERNET TYPE RECRUITMENT OF 12556 EXPLAINING ON THE INTERNET. 12557 MY RESEARCH ASSISTANCE ARE 12558 EXTREMELY GOOD EXPLAINING IT. 12559 WE READ CONSENT TO ALL SUBJECTS 12560 BECAUSE I KNOW THE HEALTH 1256LITERACY IS INCREDIBLY LOW. 12562 SO AFTER IT'S PAINFUL WE HAVE IT 12563 NOW RECORDED, IT GOES ON WITH 12564 THIS LEGALESE BUT AT THE END, WE 12565 DO BULLET POINTS, THESE ARE THE 12566 MAIN THINGS TO MAKE SURE ARE 12567 HERE. 12568 DO YOU HAVE QUESTIONS? 12569 I'M IN THE HAVING A PROBLEM WITHñjr 12570 ENGAGEMENT -- NOT HAVING A 1257PROBLEM WITH ENGAGEMENT, IT IS 12572 -- I'M NOT HAVING PROBLEMS. 12573 I UNDERSTAND -- WHEN YOU MADE A 12574 COMMENT ABOUT IF THERE ARE NO 12575 RESOURCES, WE DON'T ASK THE 12576 QUESTIONS, TERRIFIED ME. 12577 THERE AREN'T RESOURCES FOR 12578 SUBSTANCE USE, THERE AREN'T 12579 RESOURCES FOR MENTAL HEALTH SO 12580 ANOTHER WAY TO STIGMATIZE THOSE 1258AREN'T GETTING ENOUGH RESOURCES. 12582 IT BECOME AS CIRCULAR PROBLEM. 12583 >> I HAVE A COMMENT. 12584 WHEN WE TALK BROAD CONSENT THAT 12585 SCARES ME. 12586 ALL I CAN THINK OF IS HEN REYES 12587 TA LAX, YOU TALK ABOUT NOT 12588 REALLY GOING THROUGH MAKING A 12589 BROAD CONSENT, I -- THAT CON 12590 FOUND ME HOW WE CAN TALK ABOUT 1259THAT. 12592 >> KATHY, YOUR THOUGHTS. 12593 >> NOT HOW TO TALK ABOUT IT BUT 12594 THE FACT SO MANY THINGS HAVE 12595 HAPPENED, SO MANY ATROCITIES 12596 HAVE OCCURRED OVER THE YEARS, TO 12597 THINK ABOUT REDOING HIPAA OR 12598 BROADEN HIPAA OR CHANGE SOME OF 12599 THESE PROTECTIVE MEASURES PUT 12600 INTO PLACE BECAUSE OF THINGS 1260THAT HAVE HAPPENED IN THE PAST. 12602 I GUESS I NEED MORE CONVERSATION 12603 ON THAT. 12604 MORE EDUCATION ON THAT. 12605 MORE INFORMATION ON IT. 12606 THANK YOU. 12607 >> I WOULD LOVE TO HAVE MORE 12608 CONVERSATION WITH YOU AND OTHERS 12609 ABOUT THAT I HAD THE HONOR 12610 WORKING CLOSE WHETHER I THE LAX 1261FAMILY. 12612 AND THEY HAVE BEEN ONE OF THE 12613 BIG CATALYSTS FOR PROPOSING 12614 BROAD CONSENT. 12615 HENRY YES TA LAX WAS NOT ASKED 12616 FOR HER PERMISSION NOR WAS SHE 12617 INFORMED THAT HER TISSUES WERE 12618 USED TO GENERATE THE FIRST 12619 IMMORTAL CELL LINE. 12620 AND HER FAMILY NOW IS I WOULD 1262SAY AMONG THE BIGGEST ADVOCATES 12622 FOR BROAD DATA SHARING AND BROAD 12623 PARTICIPATION IN BIOMEDICAL 12624 RESEARCH AND HAVE BEEN A BIG 12625 CATALYST AROUND REFORMING THE 12626 COMMON RULE AND PROPOSAL FOR 12627 BROAD CONSENT. 12628 THAT REQUIRE ADDITIONAL 12629 CONVERSATION, I WOULD BE P 12630 HAPPEN MY TO TALK MORE ABOUT 1263THAT. 12632 >> LESSONS TO BE LEARNED FROM 12633 THAT BUT NOT THAT WE SHOULDN'T 12634 HAVE A BROAD CONSENT, WE SHOULD 12635 ADD A CONSENT. 12636 >> I WOULD LIKE TO SAY THE OTHER 12637 PROBLEM ABOUT CONSENT IT'S HARD 12638 SOMETIMES TO FIGURE OUT WHERE 12639 THEY END. 12640 SOMEBODY GIVES A CONSENT FOR 1264USING SPECIMEN FOR 12642 CARDIOVASCULAR DISEASE BUT 12643 SOMEBODY WANTS TO STUDY 12644 RELATIONSHIP BETWEEN PTSD AND 12645 CARDIO VASCULAR DISEASE, IS THAT 12646 INSIDE OR OUTSIDE LIMITS OF 12647 CONSENT? 12648 SO YOU FIND INVESTIGATORS AND 12649 IRBs, HAVE A GREAT DEAL OF 12650 TIME STRUGGLING WITH THIS. 1265ONE THING ABOUT A BROAD CONSENT 12652 IS IT'S UNAMBIGUOUS. 12653 TO WHAT IT MEANS SO YOU 12654 DEFINITELY HAVE PEOPLE THAT ARE 12655 UNCOMFORTABLE WITH IT BUT I'M 12656 UNCOMFORTABLE ABOUT NANOCONSENT 12657 BECAUSE IN THE END SOMEBODY ELSE 12658 IS GOING TO BE INTERPRETING WHAT 12659 THAT MEANS. 12660 THEY'RE NOT GOING TO UNDERSTAND 1266WHAT I WAS THINKING AND I CAN'T 12662 REALLY UNDERSTAND WHAT THEY'RE 12663 THINKING. 12664 JUST A THOUGHT. 12665 >> ECHO EXPERIENCE WITH 12666 PANELISTS, OVER AND OVER AGAIN. 12667 YES, SIR. 12668 >> N TOM INSEL FROM NIMH. 12669 I WANT TO RESPOND TO SOMETHING 12670 YOU SAID, DR. BIERUT WHICH IS 1267REALLY VERY HELPFUL, IS THE 12672 IDEA, THERE'S TWO THINGS, ONE IS 12673 ADVOCACY FOR INCLUDING PEOPLE 12674 WITH MENTAL ILLNESS IS 12675 SPECTACULAR. 12676 ON THE OTHER HAND, THE COMMENT 12677 WHICH WAS WE LOOK FOR PEOPLE WHO 12678 GIVE BROAD CONSENT AND THOSE ARE 12679 THE PEOPLE THAT WE INCLUDE. 12680 AND THAT MAKES SENSE. 1268MAYBE THAT FOR THIS EFFORT THE 12682 PMI EFFORT, THAT'S JUST THE KIND 12683 OF POLICY TO ADHERE TO, THOSE 12684 ARE PEOPLE WHO VOLUNTEER AND 12685 WORK WITH US. 12686 MY QUESTION IS WITH RESPECT TO 12687 YOUR COMMENT ABOUT MENTAL 12688 ILLNESS AND OTHER GROUPS, DOES 12689 THIS BIAS OUR SAMPLE IN SOME 12690 WAY? 1269IS THAT A PROBLEM FOR US IF WE 12692 SAY WE'RE ONLY GOING TO TAKE 12693 PEOPLE WHO WILL AGREE TO THAT 12694 KIND OF CONSENT, WHAT ARE WE 12695 LOSING AS A RESULT? 12696 >> THAT IS A GREAT QUESTION. 12697 I WILL TELL YOU -- I'LL SPEAK 12698 FROM MY EXPERIENCE, WHICH IS I 12699 HAVE SEEN NO MEANINGFUL 12700 DIFFERENCES ACROSS ANY VARIABLE 1270THAT I HAVE LOOKED AT. 12702 MEN AND WOMEN EQUALLY AGREE TO 12703 BROAD CONSENT. 12704 ACROSS RACIAL GROUPS, EQUALLY 12705 AGREED TO EQUALLY AGREE. 12706 I CAN GO ON WITH THE LIST AND 12707 WITH MENTAL ILLNESS. 12708 THE BARRIER, I DO THINK THERE IS 12709 A BARRIER AND WHERE DO I THINK 12710 BARRIERS ARE? 1271SO ONE OF THE REASONS AFRICAN 12712 AMERICANS ARE NOT GENETIC 12713 STUDIES HAS TO DO WITH BARRIER 12714 OF REACHING THAT INDIVIDUAL. 12715 SO WHEN I WAS RECRUITING THROUGH 12716 PHONE CALLS IN THE ST. LOUIS 12717 DETROIT AREA, WE WERE RECRUITING 12718 DRIVER'S LICENSE AND GETTING 12719 PHONE NUMBERS FROM DRIVER'S 12720 LICENSE. 1272THE PHONE NUMBERS FROM THE 12722 AFRICAN AMERICAN COMMUNITY 12723 CHANGED MORE OFTEN. 12724 THEY WERE NO LONGER AT THE 12725 ADDRESS AND I THINK IT HAS TO DO 12726 WITH POVERTY, MOVING FROM HOUSE 12727 TO HOUSE. 12728 BUT ONCE I GOT A PERSON AFRICAN 12729 AMERICAN THEY CONSENTED TO 12730 PARTICIPATE IN GENETIC STUDY AT 1273HIGHER RATE THAN WHITES. 12732 SO IT IS THE OUTREACH, SO WE 12733 NEED TO MAKE SURE WE DO OUTREACH 12734 TO COMMUNITY WITH MENTAL 12735 ILLNESS, IT WILL BE EASY NOT TO 12736 DO OUTREACH. 12737 THEY LIVE IN GROUP HOMES, THEY 12738 MAYBE HOMELESS, A VARIETY OF 12739 THINGS. 12740 IT'S THE OUTREACH THAT I THINK 1274IS THE MAIN THING SO MY FEAR IS 12742 IT'S HIGHER SOCIO ECONOMIC 12743 STATUS, I'M ON THE INTERNET, I 12744 CAN CLICK IN AND THAT'S WHO 12745 WE'RE GOING TO GET IN PMI. 12746 WE HAVE TO MAKE SURE WE REACH 12747 INTO COMMUNITIES THAT AREN'T 12748 GETTING HEALTHCARE. 12749 AND ARE NOT GENERALLY 12750 REPRESENTED. 1275I WOULD LIKE TO ADD, WHEN YOU 12752 WERE TALKING I HAD TO SMILE 12753 BECAUSE YOU SAID MY RESEARCH. 12754 AND SUBJECTS, IT'S LIKE NO IT'S 12755 PARTNERS AND OUR RESEARCH. 12756 I APOLOGIZE YOU ARE ABSOLUTELY 12757 CORRECT. 12758 >> DO YOU KNOW WHAT, IT'S NOT MY 12759 DATA. 12760 >> IT'S 5:15,'S TIME FOR 1276COMMENTS THAT DON'T REQUIRE 12762 RESPONSES. 12763 PEOPLE WAITING VERY PATIENTLY. 12764 >> UNCHARACTERISTIC 12765 >> I WOULD ADD BACK TO 12766 DISCUSSION OF OVERPROTECTING 12767 PEOPLE FROM DATA, I THINK 12768 ANOTHER GROUP WE HAVE ALREADY 12769 REFERENCED DURING THE DAY, THE 12770 NEED TO EDUCATE CLINICIANS AND 1277RESEARCHERS. 12772 A LOT OF THE PROTOCOLS TO GET 12773 OVERPROTECTED, WE ALSO HAVE 12774 DIFFICULTY PARTICULARLY WITHIN 12775 PSYCHIATRY ACCESSING PATIENTS TO 12776 SEE IF THEY WANT TO PARTICIPATE 12777 IN STUDIES. 12778 SO I THINK THAT IS PART OF THE 12779 WHOLE PMI AND REITERATES THAT. 12780 >> ONE FINAL COMMENT. 1278>> CARL (INAUDIBLE) WITH MIT. 12782 I GUESS -- I'M A TRANSFER 12783 PERSON, I HAVE A BRC MUTATION 12784 AND A SON WITH (INAUDIBLE) 12785 DISEASE. 12786 SO I GUESS MY COMMENT TO BE 12787 BRIEF, I KNOW WE'RE AT THE END 12788 IS I THINK IN MANY CASES, AT 12789 LEAST IN THE COMMUNITY DATA 12790 SHARING COMES UP BECAUSE IT'S 1279BEEN REALLY APPARENT TO US THAT 12792 A HUGE BARRIER TO KIND OF MAKING 12793 PROGRESS IS AROUND VARIANTS OF 12794 UNKNOWN SIGNIFICANCE. 12795 AND NOW THAT WE HAVE PANEL 12796 TESTS, WE NET GET MORE OF THOSE 12797 TO SOME DEGREE SO I THINK A LOT 12798 OF DISCUSSION IS AROUND CONSENT 12799 AND THE WHAT HAPPENS IF A 12800 PATIENT WITNESS THEIR OWN DATA 1280OR THEIR OWN SPECIMEN. 12802 WHAT HAPPENS WHEN THE GENETIC 12803 TESTING COMPANY ITSELF DOESN'T 12804 SHARE THE DATA? 12805 AND THE PATIENT WANTS THE DATA 12806 SHARED BECAUSE THAT'S WHAT 12807 HAPPENED WITH GENETICS. 12808 AND AS MUCH AS COMMUNITY IS 12809 AWARE OF THIS, REALLY NOTHING 12810 HAS HAPPENED TO CORRECT IT IN 1281ANY WAY. 12812 THE OTHER COMPANIES ARE NOT IN 12813 FACT DOING THAT. 12814 SO I DON'T KNOW IF ANYBODY CAN 12815 RESPOND TO THAT. 12816 >> GREAT POINT. 12817 I WANT TO THEY CAN THE PANELIST 12818 FOR ENLIGHTNING SESSION. 12819 >> THANK YOU ALL SO MUCH FOR 12820 YOUR ENERGY AND ENGAGEMENT AND 1282EVERYTHING YOU BROUGHT INTO THE 12822 DISCUSSION. 12823 IT'S BEEN EXCITING AND I LOVE 12824 THAT WE HAVE HEARD ABOUT THE 12825 ISSUES AND CHALLENGES BUT ALSO 12826 THAT WE HEARD ABOUT THE 12827 SOLUTIONS. 12828 AND PEOPLE IN GROUPS THAT 12829 ACTUALLY ARE DOING INNOVATIVE 12830 THINGS AND DOING THEM 1283SUCCESSFULLY. 12832 SO LET'S GIVE YOU A BRIEF 12833 OVERVIEW OF THE WORKSHOP DAY ONE 12834 SOME UPSHOTS. 12835 WE HAVE A HUGE OPPORTUNITY HERE 12836 TO PARTNER WITH RESEARCHERS AND 12837 RESEARCH PARTICIPANTS. 12838 TRUST, TRANSPARENCY AND 12839 CONTINUOUS COMMUNICATION ARE KEY 12840 TO FOSTERING LONG LASTING 1284RELATIONSHIPS IN THE COHORT 12842 WHICH ACTUALLY I SHOULD ACTUALLY 12843 TAKE A LINE AND DRAW THROUGH 12844 COHORT BECAUSE WE'RE NOW 12845 ACTUALLY A COMMUNITY BASED 12846 GENOMICS STUDY, RIGHT? 12847 CHANGED AS THE DAY WENT ON. 12848 PEOPLE NEED TO SEE INTRINSIC 12849 VALUE OF THE RESEARCH AND WANT 12850 THEIR HEALTH INFORMATION. 1285WE NEED TO COME UP WITH A NEW 12852 LANGUAGE. 12853 WE HAVE AN OPPORTUNITY FOR NEW 12854 DEFINITIONS FOR TRADITIONAL 12855 RESEARCH TERMS AND CERTAINLY 12856 PARTNERSHIP. 12857 HERE IS OUR TWITTER I DON'T HAVE 12858 VIEW FROM ALL THE TWITS IN THE 12859 AUDIENCE WHO TWITTING. 12860 -- WHO ARE TWITTING. 1286WE HAVE 1773 TWEETS. 12862 WE HAD 15.7 MILLION IMPRESSIONS, 12863 THE LAST WORKSHOP WE HAD 12864 9 MILLION SO GOING UP. 12865 WE HAD 330 PARTICIPANTS AND THEN 12866 WE HAVE 440 PEOPLE WHO TUNED FOR 12867 THE VIDEOCAST WHICH IS AWESOME. 12868 SO THANK YOU, THOSE OF YOU ON 12869 THE VIDEOCAST AND WILL BE BACK 12870 WITH US TOMORROW, WE KNOW WE 1287MOVED AROUND THE ROOM WITH 12872 MICROPHONES TO STIMULATE 12873 DISCUSSION AND WE APPRECIATE 12874 YOUR PATIENCE WITH THAT. 12875 HERE IS SOME SHOTS FROM OUR 12876 WELCOME SESSION. 12877 SO THIS IS REAL TIME BECAUSE NIH 12878 HAS GRATEFULLY MADE THE SLIDES 12879 FOR ME SO THIS WILL BE FUN. 12880 THIS IS ME, ON 4TH OF JULY WE 1288CELEBRATE THE BIRTH OF THE 12882 NATION AND BIRTH OF RESEARCH 12883 COHORT. 12884 AND PMI NETWORK LAUNCHING WE THE 12885 PEOPLE OF PRECISION MEDICINE 12886 INITIATIVE WITH ME AND 12887 DR. FRANCIS COLLINS. 12888 SO WE ARE HERE TO LIBERATE 12889 PATIENT DATA AND THEN NIH 12890 DIRECTOR PARTICIPANTS WILL PLAY 1289A SIGNIFICANT PART IN DESIGN OF 12892 PMI NETWORK TODAY IS WORKSHOP 12893 LAYS GROUND FOR HOW. 12894 AROUND REAL ENGAGEMENT. 12895 AND THAT WAS ACTUALLY BY 12896 DR. FRANCIS COLLINS TWEETED BY 12897 KELLY EDWARDS. 12898 SO SESSION ONE ENVISIONING A 12899 COHORT PARTICIPANT DRIVEN 12900 INCLUSIVE AND DIVERSE. 1290SHARON TERRY WATCHING OUR 12902 LANGUAGE. 12903 BUILDING BRINGS, WE START IN THE 12904 COMMUNITY, THERE'S NO BRIDGE 12905 NEEDED. 12906 WHY DO WE START HERE AND NOT 12907 THERE? 12908 THEN DR. DARRYL ROBERTS, I ASKED 12909 BRANCH HOW TO ENGAGE UNDERSERVED 12910 POPULATIONS IN RESEARCH. 1291HE SAID MAKE RESULTS USEFUL TO 12912 THEM, HOW DO WE ACCESS THEM? 12913 KELLY EDWARDS ON VERY FELL 12914 BRANCH HOW DO WE REACH PEOPLE 12915 GET BOOTS ON THE GROUND AND GO 12916 WHERE PEOPLE ARE. 12917 AND THEN SEAN SIGMUND, PMI 12918 NETWORK SOCIAL MEDIA NEEDS TO BE 12919 LEVERAGED TO SIMPLIFY CLINICAL 12920 TRIAL RECRUITMENT AND CONSENT 1292PROCESS. 12922 SESSION 2 PUBLIC PERSPECTIVES OF 12923 PMI COHORT, CLAUDIA WILLIAMSS 12924 MAJOR CONCLUSIONS FROM PMI 12925 NETWORK. 12926 SURVEY PARTICIPANTS WANT TO BE 12927 EQUAL PARTNERS AND VALUE GETTING 12928 HEALTH INFORMATION BACK. 12929 DONNA YOUNG DURING VINCE 12930 BONNHAM'S TALK ON RFI RESULTS, 1293COMMUNITY ENGAGEMENT STRATEGIES 12932 MEANINGFUL ENGAGEMENT CONTINUOUS 12933 COMMUNICATION, TRANSPARENCY AND 12934 PARTNERSHIP, CONTINUING ON, WE 12935 HAVE MORE FAITHFUL PARTICIPANTS 12936 EQUALS MORE RESPONSIBILITY OF 12937 NIH RESEARCHERS SO DAVE KAUFMAN 12938 DURING THE NIH SURVEY RESULT 12939 PRESENTATION AND WE HAVE A GREAT 12940 POINT FROM AUDIENCE COMMUNITY 1294TIME IS NOT INSTITUTIONAL TIME 12942 YOU CAN'T MEET UNREASONABLE 12943 DEADLINES IN REFERENCE TO GRANT 12944 CYCLE TIMES. 12945 SESSION 3 INCLUSION ENGAGEMENT 12946 GOALS RELATED TO HEALTH EQUITY. 12947 POSITIVE DISRUPTION AND RESEARCH 12948 PRACTICE GOES BEYOND US THEM TO 12949 THE NEW WE. 12950 IT'S RISKY. 1295REAL CHANGES ARE HARD. 12952 THANK YOU. 12953 WE KEEP HEARING THEMES BUILDING 12954 THROUGHOUT THE DAY. 12955 THIS IS EXCITING I'M TALKING 12956 FROM THE PARTICIPANT SIDE OF 12957 THINGS, NOTHING MENTIONED IS 12958 INSURMOUNTABLE, WE CAN DO 12959 EVERYTHING BUT WE CAN'T DO 12960 EVERYTHING YET. 1296COMMENT BY DR. -- MUST BE 12962 CAREFUL PRECISION MED ISN'T 12963 BUILT FOR PRIVILEGE AND THAT 12964 INCREASES HEALTH DISPARITIES. 12965 SESSION 4 CHALLENGES AND 12966 RECRUITING AND RETAINING 12967 DISADVANTAGE AND 12968 UNDER-REPRESENTED POPULATIONS 12969 AND BEST PRACTICES FOR 12970 OVERCOMING THEM. 1297SO WE HAVE SPERO MANSON, 12972 CONTRIBUTIONS FROM INCENTIVIZE 12973 WE INCENTIVIZE WE LOST THE 12974 BATTLE TO ENGAGE. 12975 AND THEN ALLISON AGAIN WE HAVE 12976 DOLLARS FOR RESEARCH DON'T 12977 NECESSARILY NEED TO NEED MORE 12978 DOLLARS TO INCREASE MINORITY 12979 PARTICIPATION, WE NEED DIFFERENT 12980 DOLLARS AND FLEXIBLE MODELS. 1298CHALLENGES CONTINUED AND THEN 12982 BEST PRACTICES FOR OVERCOMING 12983 THEM. 12984 PLUS ONE MUST BE INCLUSIVE ALL 12985 LEVEL ABILITY HEALTH AND TECH 12986 LITERACY FINANCIAL STATUS THE 12987 AND LANGUAGE. 12988 THEN FRANCIS COLLINS POINTS OUT 12989 THE MINUTE MAIN PMI NETWORK IS 12990 LONGITUDINAL. 1299SESSION 5 ESTABLISHING 12992 COLLABORATIVE AND INCLUSIVE 12993 GOVERNANCE LARGE STUDY. 12994 AL RICHARD MONDAY'S CALL TO 12995 ACTION LET'S GIVE COMMUNITY 12996 CREDIT WHAT THEY DO KNOW. 12997 THEN WE HAVE LISA SAVAGE TO 12998 REVISION OF BELMONT REPORT 12999 REFLECTS INTERESTS OF COMMUNITY. 13000 QUESTION MARK. 1300THAT WILL BE A GOOD READ WHEN 13002 IT'S DONE. 13003 ANNA MCCULLOUGH, AL RICHARD 13004 MONDAY AGAIN WE HAVE TO CONVINCE 13005 PEOPLE WE'RE SERIOUS ABOUT 13006 PATIENT CENTER AND WE WANT TO 13007 KNOW WHAT THEY THINK AND WANT. 13008 AND JAMIE FROM PCORI WE HAVE 13009 CONSUELO WILKINS TALKING 13010 BIDIRECTIONAL COMMUNICATION FOR 1301ENGAGEMENT. 13012 SESSION 6 WHAT WOULD A DIRECT 13013 PARTICIPANT COHORT LOOK LIKE? 13014 MEGAN O'BOYLE, CONGRATULATIONS, 13015 PMI SHALL ACCOMMODATE HEALTH 13016 DATA SHARING FROM 0 TO 100% 13017 ENABLE THOSE WHO WANT THE TO 13018 SHARE IT ALL. 13019 AND THEN AN MA MCCULLOUGH, 13020 DR. SUSAN, WE NEED TO MAKE SURE 1302THE NIH AND PMI NETWORK LETS 13022 RESEARCH BE DEFINED BY COMMUNITY 13023 AND NOT CREDENTIALED 13024 RESEARCHERS. 13025 DIRECT FROM PARTICIPANT MODEL 13026 SALLY OKUN ON PATIENT GENERATED 13027 DATA. 13028 ADD TECH ANY COLOR TO THE BLACK 13029 AND WHITE DATA GENERATED THROUGH 13030 TRADITIONAL RESEARCH MODELS. 1303MEGAN O'BOYLE, THERE'S A CULTURE 13032 OF FEAR AND RESEARCH I DON'T 13033 WANT TO BE PROTECTED, IF YOU DO, 13034 THAT'S FINE. 13035 LUCIA SAVAGE MATT MIGHT. 13036 ONLY QUESTION, WHAT A 13037 PARTICIPANT WANTS DONE WITH 13038 THEIR DATA. 13039 AND THEN KATHY HUDSON, A NEW 13040 TWEETER, SHE'S GETTING THE 1304TRAINING WHEELS OFF, LAURA JEAN 13042 BIERUT, RESEARCH PARTICIPANTS 13043 LOVE BROAD CONSENT, MAKE SURE 13044 IRBs AND INSTITUTIONS DON'T 13045 STAND IN THE WAY. 13046 MY CAREER A IS BETTER BECAUSE OF 13047 DATA SHARING. 13048 DR. SUSAN LOVE WHERE DATA LIVES 13049 IS LESS IMPORTANT THAN WHO IS IN 13050 CONTROL OF IT. 1305SO OUR CHOMP I DON'T KNOW IS A 13052 TIE -- CHAMPION IS SUSAN LOVE 13053 AND SHARON TERRY, SHARON HAD TO 13054 RUN TO ANOTHER MEETING. 13055 CONGRATULATIONS. 13056 THANK YOU. 13057 IF YOUR THUMBS ARE TIRED. 13058 [APPLAUSE] 13059 THEN A COUPLE OF PHOTO TOES OF 13060 LUNG CHALLENGE. 1306REMEMBER THIS MORNING I SAID 13062 HERE IS THE IMPORTANCE, WE'RE 13063 CREATING THE WE, NOT UP AND DOWN 13064 SO ASK YOURSELVES DID YOU DO A 13065 GREAT JOB AT LUNCH OF PICKETING 13066 WITH OTHER GROUPS, THAT YOU 13067 DON'T KNOW. 13068 SO THE FIRST PHOTO, MYOLOGIES TO 13069 MEGAN O'BOYLE, BY SEVERAL OF 13070 YOU, WE HAVE MOSTLY OR ENTIRELY 1307PATIENT COMMUNITY TABLE UNLESS 13072 ALLISON, YOU FROM ACADEMY SO 13073 MAYBE ABLE TO CREDIT THERE. 13074 WE HAVE NIH TABLE YOU CAME 13075 LATER. 13076 I SAW YOU. 13077 THIS WAS LIKE A GOOD HALF HOUR 13078 EVERYBODY KNEW EACH OTHER. 13079 I'M GOING TO GO WITH OUR 13080 ACADEMIC TABLE. 1308AND THEN WE HAD THIS TABLE THAT 13082 WAS ACTUALLY ON THE BOTTOM RIGHT 13083 HAND CORNER THAT WAS ACADEMIA, 13084 GOVERNMENT, PATIENT AND 13085 REGULATORY. 13086 I WAS AT THAT TABLE SO SORRY 13087 ARE. 13088 YEAH. 13089 PEARL, THANK YOU. 13090 SO AGAIN WE HAVE A COUPLE OF 1309FOLKS THAT ACTUALLY KNOW EACH 13092 OTHER AND MAYBE DIDN'T VENTURE 13093 TOO FAR OUTSIDE THEIR CIRCLE SO 13094 WE'LL CHALLENGE THAT. 13095 TOMORROW YOU WILL HAVE AN 13096 OPPORTUNITY TO COME BACK AND S 13097 LATE ON BREAKS. 13098 SO WITH THAT, I WANT TO SAY 13099 THANK YOU SO MUCH TO ALL OF OUR 13100 PANELISTS FOR COMING AGAIN AND 1310PARTICIPATING. 13102 AND CERTAINLY THE AUDIENCE YOU 13103 GUYS BROUGHT TO THIS AND YOU 13104 HAVE GIVEN SO MUCH TO THE 13105 WORKING GROUP FOR THINGS THAT 13106 WILL BE USEFUL TO US AS WE WRITE 13107 THIS REPORT. 13108 THANK YOU TO ALL OF OUR ARCCD 13109 PMI WG MEMBERS WHO MODERATED AND 13110 JUMPED ON OUR CRAZY BUS TO 1311ORGANIZED CALLS AND SUPPORT 13112 THEIR SPEAKERS. 13113 TOMORROW WE HAVE MEETING 13114 STARTING AT 8 A.M. AND WRAPS AT 13115 12:30. 13116 IF YOU HAVEN'T SHOT YOUR PMI 13117 FACES OR YOUR FACES PRECISION 13118 MEDICINE VIDEO YET YOU CAN DO 13119 THAT UNTIL I THINK 5:30. 13120 ACTUALLY IT'S 5:30 NOW. 1312THEY SAID THEY WOULD STICK 13122 AROUND FOR 30 MINUTES SO YOU 13123 HAVE TIME TO SHOOT THOSE TODAY 13124 BEFORE YOU START DRINKING. 13125 SO AGAIN, THANKS, EVERYBODY AND 13126 WE'LL SHOW YOU TOMORROW THE AT 13127 8 A.M. 13128 [APPLAUSE] 13129 AND WE'LL SEE YOU TOMORROW AT 13130 8 A.M.

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