SO IN TERMS OF KIND OF A RECAP, I JUST WANTED TO OFFER JUST A FEW WORDS. I KNOW THAT THE CHIEF COOK WHO REALLY ABOUT GETTING BACK TO THIS PLACE OF GIVING AND RECEIVING LOVE, AND FOR ME, THAT WAS REALLY SIGNIFICANT IN SOME OF THE WORK THAT WE WERE DOING AT NCAI WHEN I WAS SHIFTING AROUND RESEARCH FROM ONE MUCH OF FEAR TO LOVE, MITIGATE FEARS COMMUNITIES ABOUT PARTICIPATING IN RESEARCH TO LEVERAGE THIS AS ONE SET OF TOOLS TO SHOW LOVE AND TO GET TO A DIFFERENT SET OF OUTCOMES, I WAS CHEWING ON THAT ALL DAY AND ALL EVENING AND JUST AGAIN WANT TO APPRECIATE EVERYBODY COMING TO THE TABLE AND BRINGING INSIGHT ABOUT HOW WE DO OUR WORK BETTER IN PARTNERSHIP AND TOGETHER AROUND THE TABLE. SO I'VE BEEN STARTING TO KEEP TRACK OF A FEW ITEMS FOR FOLLOW-UP FROM THIS CONVERSATION. I JUST WANTED TO PUT SOME OF THOSE OUT THERE AS WE PREPARE FOR OUR CONVERSATION WITH DR. TABAK LATER TODAY. I TOOK A NOTE THAT ONE OF THE ITEMS FOR FOLLOW-UP IS WE WANT TO PROVIDE SOME INPUT TO NIMHD ABOUT THEIR PRIORITIES. WE HAD THE PRESENTATION YESTERDAY. MY SENSE IS THEY ARE IN A MOMENT OF BUILDING A STRATEGIC VISION SO I THINK IT'S TIMELY TO THINK ABOUT HOW WE PRIORITIZE AMERICAN INDIAN ALASKA NATIVE NEEDS IN THAT SPACE. WE WANTED TO CLARIFY AND GET MORE INFORMATION ABOUT NIH SUPPORT OF TEXT. THAT CAME UP AND WE HAD SOME DISCUSSION OF IT BUT I DO THINK WE WANT TO FOLLOW UP AND TRY TO UNDERSTAND WHAT THE FUNDING COMES FROM, WHAT NIH'S ROLE IS IN THAT, AND THE DIFFERENCE BETWEEN WHAT WE WERE HEARING WITH BASELINE FUNDING VERSUS SOME OF THIS NEW ADDITIONAL FUNDING, AND I HEARD YESTERDAY TAT WE WANT TO TRY TO LOOK AT WHAT THE TRIBAL ENGAGEMENT HAS BEEN AROUND THOSE PRIORITIES AS WELL AS AMOUNT OF FUNDING THAT MIGHT COME THROUGH. I HEARD SOMETHING ABOUT MAPPING INTERAGENCY COORDINATE, WHAT'S ALREADY HAPPENING AND HOW CAN WE PROVE THE CDC IHS EVEN FDA COORDINATION AND UNDERSTANDING WHAT THAT LOOKS LIKES. COMMUNITY ENGAGEMENT WITHIN THE "ALL OF US" EFFORT AND CONVERSATION WITH IMPRECISE HEALTH CARE ACCESS, I HEARD DR. SOLOMON BRING UP. WE TALKED AROUND THE TABLE ABOUT HEALTH CARE AND THE SERVICES AND OFTEN BEEN TOLD THAT'S NOT NECESSARILY IN NIH'S BAILIWICK, THAT'S NOT WHAT IS DONE HERE BUT THAT'S WHERE A LOT OF OUR PRIORITIES ARE AND MANY AROUND THE TABLE SEE A CONNECTION BETWEEN HEALTH CARE SERVICE DELIVERY AND RESEARCH PRIORITIES. SO FIGURING OUT HOW TO GET THERE. AND WE TALKED A LOT ALSO ABOUT HOW TO PROVIDE INPUT AND GUIDANCE IMPROVING THE CONSULTATION PROCESS, PART OF THAT IS LOOKING AT THE DEFINITION OF INDIAN, FOR LACK OF BETTER TERM. WE TALKED ABOUT URBAN, HEARD ABOUT MIXED RACE AND MIX POPULATIONS IN TERMS OF DATA COLLECTION, SO I THINK THERE'S A LOT OF OPPORTUNITIES THERE, AS WELL AS INFORMATION ABOUT TRIBAL PROTOCOLS AND STEWARDSHIP OVERSIGHT AND HOW TO UNDERSTAND THE RANGE OF APPROACHES WITHIN THAT. I THINK THE LAST POINT IS ABOUT DATA AND SECURITY DATA, INFRASTRUCTURE, DATA SHARING AS A PRIORITY AREA POTENTIALLY FOR FUTURE CONSULTATION. A FEW NOTES AS WE ALSO PREPARE% FOR OUR PRIORITIES DISCUSSION IN A BIT ABOUT WHAT WE WANT TO OFFER BACK TO NIH AS WELL AS WHAT WE WANT TO TAKE ON AS A BODY IN THIS SPACE SO JUST A FEW THOUGHTS THERE ABOUT SOME OF THE THINGS THAT WE'VE BEEN DISCUSSING. IN TERMS OF OUR AGENDA, WE'RE GOING TO HAVE AN UPDATE FROM THE ECHO PROGRAM, WHICH IS THE ENVIRONMENTAL INFLUENCES ON CHILD HEALTH OUTCOMES, AND CHAIRPERSON PAYMENT AND I MET WITH DR. GILMAN AND HIS TEAM BEFORE THIS MEETING TO HELP PREPARE HIM TO UNDERSTAND MORE ABOUT WHAT THE TACK IS AND THEY ARE EXCITED TO SHARE AND HEAR FROM THIS GROUP ABOUT SOME WAYS OF PRIORITIZING OUTCOMES AND DATA WORK AND RESEARCH UNDER THE ECHO PROGRAM. WE'LL THEN MOVE INTO THE ELECTION FOR THE CHAIR AND CO-CHAIR, I'VE GOTTEN A FEW -- KENDRA AND I HAVE A FEW NOMINATION, WE'LL GO THROUGH THAT. I'VE BEEN ASKED TO REITERATE OUR CHARTER, ELECTED OR APPOINTED TRIBAL LEADERS FOR THOSE POSITIONS WHICH I BELIEVE ALL OF US AS DELEGATES SHOULD BE. WE'LL MOVE INTO OUR TCAC PRIORITIES DISCUSSION. THAT'S GOING TO BE A START TO THE PRIORITIES BUT HAVE YOU SOME MATERIALS IN YOUR PACKET. AND THINKING ABOUT HOW WE WANT TO FORMALIZE A DOCUMENT LIKE THAT AND WORK WITH DR. WILSON AND HIS OFFICE AROUND ACTIONING SOME OF THOSE PRIORITIES AND DETERMINING WHAT THAT PROCESS LOOKS LIKE. WE HAVE SOME TIME FOR A BREAK. WE'LL TRY TO KEEP TO TIME. YESTERDAY WAS A WORKING LUNCH AND YOU DIDN'T GET A BREAK SO IT WAS A REALLY LONG DAY. SO I'LL TRY TO BE BETTER ABOUT THE TIME THERE. AND THEN WE HAVE ABOUT AN HOUR SLATED FOR TRIBAL CAUCUS, PREPARING FOR OUR LATER MEETING, IT'S FUN TO HAVE THE LUNCH WITH OUR AMERICAN INDIAN/ALASKA NATIVE SCHOLARS TO HEAR WHAT THEIR EXPERIENCE AT NIH HAS BEEN AND SHARE SOME OF OUR OWN EXPERIENCES WITH THEM TO ENCOURAGE THEM ALONG THE PATHWAY THERE. WE DO HAVE A DISCUSSION WITH DR. TABAK AND DR. ANDERSON FROM ONE TO TWO, AND THEN FINAL PRESENTATION ON CANCER GENOMICS AND RESEARCH IN AMERICAN INDIANS AND ALASKA NATIVE COMMUNITIES, TO LOOK AT CANCER MORE SPECIFICALLY. WE'LL WRAP UP AND GET NEXT STEPS AND REITERATE SOME HOUSEKEEPING AROUND MONTHLY CALLS FROM THERE. ANY OTHER KIND OF OPENING COMMENTS? YEAH, PLEASE. >> CAN I ADD BEFORE WE GO TO THE PRIORITIES DISCUSSION, THEY WERE GOING TO BUTTON UP CHARTER DISCUSSION AS WELL. >> ABSOLUTELY. WE'VE ONLY GOT ABOUT FOUR OR FIVE MORE PIECES AND I DON'T THINK TOO MANY SHOULD BE SUPER-CONTROVERSIAL SO IF YOU HAVE A MOMENT TO LOOK THROUGH REMAINING CHARTER PIECES THAT WILL HELP EASE OUR DISCUSSION THERE. OKAY. DR. ANDERSON, DO YOU HAVE -- >> I HAD ONE -- SOMETHING THAT'S BEEN CONCERNING ME THAT I WANT TO PUT OUT THERE BUT I THINK IT'S AN OPPORTUNITY, WITH THE "ALL OF US" PROGRAM, IT'S A VERY LARGE PROGRAM, AND IT'S MOVING QUICKLY AND HOPEFULLY IT WILL BE SEVERAL DECADES AND WILL PRODUCE VALUABLE INFORMATION AND WE NEED EVERYBODY TO BE INVOLVED. I'VE BEEN WATCHING HOW ARE THEY ENGAGING AMERICAN INDIAN/ALASKA NATIVE COMMUNITIES FOR INPUT AND I REALLY -- I'M SORRY, I OFFERED YOUR HELP YESTERDAY BECAUSE I THINK THAT THEY NEED A PORTAL, SOMEBODY TO GO TO FIRST TO GIVE THEM GUIDANCE SO THAT THEY DON'T GET VERY LIMITED SCOPE OF INPUT OR SOMETHING. SO THANKS AND I HOPE YOU'RE WILLING TO DO THAT. IT LOOKED LIKE ERIC WAS VERY HAPPY TO TAKE YOUR INPUT. >> I DIDN'T REALLY QUITE UNDERSTAND, IT SOUNDED LIKE THERE'S A COMMUNITY ENGAGEMENT COMPONENT OF THAT THAT THEY HAVEN'T ISSUED A CONTRACT ON YET SO THAT WAS MY QUESTION ABOUT HOW THIS BODY COULD ENGAGE WITH THAT GROUP, OR BE ADVISORY IN SOME WAY. >> I THINK WE HAVE TO FOLLOW THIS AND BE READY TO ACT. >> OKAY. >> PLEASE. >> MOST OF US SIT ON OTHER ADVISORY COMMITTEES, AND WITH OTHER ORGANIZATIONS, SO WE CAN SURELY HELP WITH THAT, YOU KNOW, AND HAVE THOSE DISCUSSIONS. SO WE CAN HELP DISSEMINATE AND MAKE SURE THAT THEY ARE ON AGENDAS FOR OTHER MEETINGS THAT WE ATTEND. >> OKAY. ARE OUR ECHO FOLKS HERE? EXCELLENT. WE'RE STARTING EARLY. THANKS, DR. GILLMAN, FOR BEING HERE. WELCOME. WE APPRECIATE YOU SHARING INFORMATION ABOUT ENVIRONMENTAL INFLUENCE ON CHILD HEALTH OUTCOMES PROGRAM. >> THANKS FOR THE INTRODUCTION. SINCE I WAS FIRST INTRODUCED TO TCAC BY JIM ANDERSON SOME MONTHS AGO, I'VE BEEN REALLY EXCITED TO COME AND INTERACT WITH YOU TO GET YOUR ADVICE ON HOW ECHO AND AMERICAN INDIAN AND ALASKA NATIVE AND INDIGENOUS POPULATIONS IN GENERAL INTERACT. I'VE HAD THE PRIVILEGE OF MEETING WITH MALIA AND JULIANNA IN THE BACK. THIS HAS BEEN A REALLY GOOD INTRODUCTION. AND, YOU KNOW, REALLY LOOKING FORWARD TO HEARING YOUR ADVICE TODAY. SO LET ME JUST START BY SAYING THAT ECHO, WHICH I'LL DESCRIBE IN A FEW MOMENTS, IS REALLY COMMITTED TO CONSULTATION WITH YOU AND TRIBAL NATIONS. IN OUR COLLABORATION WITH OUR AMERICAN INDIAN AND ALASKAN NATIVE PARTNERS WE WANT TO ATTEND TO HISTORICAL AND CULTURAL ISSUES YOU BRING TO THE TABLE, AS WELL AS CONDUCT RESEARCH THAT BOTH SERVES YOUR COMMUNITIES AND ENHANCES THE ECHO COMMENTS, THE ECHO-WIDE APPROACHES FOR CONSORTIA-WIDE RESEARCH. SO MY GENERAL QUESTION FOR TODAY IS WHAT ARE THE BEST WAYS FOR OUR OFFICE AND OUR INVESTIGATORS THROUGHOUT THE UNITED STATES TO BUILD RELATIONSHIPS WITH TRIBAL NATIONS AND COLLABORATE TO ADDRESS CONCERNS? AND SPECIFIC CONCERNS THAT ARE ON OUR MIND AND OF COURSE WE'RE OPEN TO HEARING MORE WHAT'S ON YOUR MIND ARE A LOT ABOUT SHARING DATA AND BIOSPECIMENS. SO WHAT DATA AND SPECIMENS ARE TRIBAL COMMUNITIES ABLE TO SHARE AND WITH WHOM, ARE THERE DIFFERENCES BETWEEN SELF IDENTIFIED AND TRIBAL IDENTIFIED AFFILIATION, WHAT ARE THE CONDITIONS OF USE BY ECHO INVESTIGATORS, WHICH WE THINK IS SORT OF THE FIRST LEVEL, AND THEN BY THE WIDER SCIENTIFIC COMMUNITY. WHAT ABOUT DATA PRIVACY, SAFETY AND SECURITY? AND DURATION OF STORAGE AND USE. AND THEN GENETICS, IS THIS UNDER THE SAME PRINCIPLES AS OTHER DATA OR A SPECIAL CASE? SO TODAY I'D LIKE TO TELL YOU ABOUT THE GOALS OF ECHO. WHAT WE'RE DOING, HOW WE'RE DOING IT, AND THEN AT THE END RETURN TO THE QUESTIONS. OUR MISSION TO ENHANCE HEALTH OF CHILDREN FOR GENERATIONS TO COME. AS YOU CAN SEE BY LOOKING AT THIS MAP OF ALL OUR GRANTEES, IT'S REALLY A NATION-WIDE PROGRAM. THROUGH THIS PROGRAM WE FOLLOW THE FOLLOWING GUIDING PRINCIPLES, TEAM WORK, WORKING WELL TOGETHER, IMPACT, RESEARCH THAT HAS AN IMPACT ON HEALTH, RESPONSIBILITY, SCIENTIFICALLY AND ETHICALLY SOUND RESEARCH, AND VALUE, GOOD STEWARDSHIP AND RETURN ON INVESTMENT. OUR OVERALL SCIENTIFIC GOAL IS TO ANSWER CRUCIAL QUESTIONS% ABOUT EFFECTS OF A BROAD RANGE OF EARLY ENVIRONMENTAL EXPOSURES ON CHILD HEALTH AND DEVELOPMENT. THE WAY WE OPERATE IS WE FEEL LIKE A GOOD START TO LIFE CAN LAST A LIFETIME AND OTHER MANY GENERATIONS. AND THERE'S A SCIENTIFIC BASIS FOR THIS THAT GOES BACK TWO OR THREE DECADES THAT'S REALLY IMPORTANT. TO ENSURE GOOD START WE NEED TO UNDERSTAND POTENTIAL RISKS AND RESILIENCE FACTORS, IT COULD BE MATERNAL OBESITY AND GESTATIONAL DIABETES WHICH OBESITY IS A RISK FACTOR FOR, THERE COULD BE THINGS WE FIND ON OUR SHELVES UNHEALTHFUL HABITS. AND THEN WE NEED TO KNOW TO WHOM THESE RISKS APPLY. THEY MIGHT DIFFER BY GEOGRAPHY, SOCIAL STATUS, AGE, ET CETERA. AND THEN TAKE ACTION IN OUR CHILDREN AND FAMILIES, WHETHER PROGRAMS LIKE CLINICAL TRIALS OR PRACTICES OR POLICIES, TO IMPROVE OUR KIDS' HEALTH. WHEN WE TALK ABOUT A BROAD RANGE OF EARLY ENVIRONMENTAL EXPOSURES, WE'RE TALKING ABOUT FROM SOCIETY TO BIOLOGY. IN THE PICTURES A COUPLE SLIDES AGO I SHOWED AN EXAMPLE OF PHYSICAL AND CHEMICAL ENVIRONMENTS, BEHAVIORAL AND BIOLOGICAL. BUT WE ALSO ARE THINKING ABOUT SOCIETY FACTORS WHERE TO KIDS GET CHILD CARE, CESAREAN SECTION, MATERNAL STRESS. AND WE'RE LOOKING AT THESE EXPOSURES FROM ABOUT CONCEPTION TO AGE 5 SO THIS IS PREGNANCY AND EARLY CHILDHOOD, AND OUR HEALTH OUTCOMES OCCUR THROUGHOUT CHILDHOOD AND ADOLESCENCE. WE'RE FOCUS ON HIGH IMPACT CONDITIONS, OBESITY, UPPER AND LOWER AIR WAY CONDITIONS LIKE ASTHMA, NEURODEVELOPMENT WHICH IS A BROAD ARRAY OF THINGS, AND SOMETHING WE'RE CALLING POSITIVE HEALTH. POSITIVE HEALTH IS DEFINED AT WELL-BEING WHICH HAS THE COMPONENTS OR DOMAINS OF LIFE SATISFACTION, POSITIVE AFFECT, MEANING AND PURPOSE. ALSO OUR GROUP ON POSITIVE HEALTH IS FOCUSING ON A PARTICULAR ASPECT, SLEEP DURATION AND QUALITY WHICH WE THINK IS REALLY IMPORTANT. SO UNDER ECHO WE HAVE SEVERAL COMPONENTS. WE HAVE A COMPONENT THAT DOES OBSERVATIONAL STUDIES CALLED COHORTS, LONGITUDINAL STUDIES OF LOOKING AT MOMS AND KIDS AND SOMETIMES DADS IN NATURAL EXPERIENCE OVER TIME. AND WE ALSO HAVE INTERVENTION TRIALS THROUGH WHAT'S CALLED THE IDEA STATES PEDIATRIC CLINICAL TRIALS NETWORK. AND THROUGH THIS RESEARCH WE WANT TO MEET SCIENTIFIC NEEDS AND ASK QUESTIONS AND INFORM PROGRAMS, PRACTICE AND POLICY. OBSERVATIONAL STUDIES I'M TALKING ABOUT SOLUTION ORIENTED QUESTIONS, WHAT ARE THE SO-WHAT QUESTIONS THAT HAVE AN IMPACT? INTERVENTION TRIALS, WE WANT TO INCLUDE CHILDREN WHO HISTORICALLY HAVE BEEN UNDERREPRESENTED, SO THIS IS ESPECIALLY IN HARD TO REACH POPULATIONS LIKE RURAL CHILDREN AND MEDICALLY UNDERSERVED. COMING BACK TO WHAT I WAS SAYING IN THE BEGINNING WE WANT TO ANSWER BROAD SCIENTIFIC QUESTIONS BUT ALSO ANSWER QUESTIONS THAT ARE IMPACTFUL FOR SPECIFIC COMMUNITIES. SO WHAT ABOUT THE OBSERVATIONAL COHORTS PART? RIGHT NOW WHAT WE'RE TRYING TO DO IS CREATE WHAT WE CALL THE ECHO-WIDE COHORT. SO ECHO STARTED WITH MULTIPLE COHORTS OF MOMS AND KIDS, LONGITUDINAL STUDIES, SO STARTING WITH EXISTING DATA EARLY SUCCESSES. AND ALL OF THESE STUDIES ARE CONTINUING TO RECRUIT OR TO RETAIN THEIR EXISTING PARTICIPANTS. WE'RE GOING TO TAKE THE DATA FROM THOSE COHORTS BOTH EXISTING AND NEW AND COMBINE INTO A SINGLE PLATFORM TO CONDUCT SOLUTION ORIENTED RESEARCH. WITH EXISTING MEASURES BECAUSE THEY COME FROM DIFFERENT STUDIES AND PEOPLE MEASURE THEM DIFFERENTLY WE HAVE TO HARMONIZE, AND NEW MEASURES WE HAVE TO STANDARDIZE, MEANING IF YOU'RE GOING TO CORRECT NEW MEASURES WE WON'T WANT YOU TO DO IT THE SAME WAY. AS I MENTIONED BEFORE, WE THINK THE USE OF THESE DATA WILL FIRST BE BY ECHO INVESTIGATORS AND THEN BY WIDER NATIONAL AUDIENCE AS A RESOURCE GOING FORWARD. SO YOU CAN THINK OF THIS ECHO COHORT PLATFORM AS MANY PEOPLE, MANY LAYERS OF DATA, OVER MANY STAGES OF THE LIFE COURSE. THE COHORTS COME FROM A WIDE SWATH OF AMERICA, THERE ARE 35 AWARDS COVERING 84 COHORTS, MAJORITY OF THESE STARTED IN THE PRENATAL PERIOD. NOW, ONE OF OUR GOALS IN THE ECHO-WIDE COHORT IS TO HAVE AT LEAST 50,000 KIDS, WHY 50,000? WHEN WE HAVE A LARGE NUMBER OF KIDS IT'S NOT AS BIG AS "ALL OF US" BUT A LARGE NUMBER FOR PEDIATRIC COHORT, WE CAN LOOK AT LESS COMMON EXPOSURES AND OUTCOMES. THAT'S THE REASON FOR A LARGE SAMPLE SIZE. WE'VE HAD OUR COHORTS ESTIMATE HOW MANY PARTICIPANTS THEY THINK THEY WILL HAVE OVER THE LIFE OF ECHO AND YOU CAN SEE WE'RE WELL ON OUR WAY TO GARNERING 50,000 CHILDREN IN ECHO. NOW, I WANTED TO SAY SOMETHING ABOUT DATA SAFETY AND SECURITY. WE HAVE THIS WONDERFUL DATA ANALYSIS CENTER AT JOHNS HOPKINS AND RTI IN NORTH CAROLINA, ATTUNED TO THESE ISSUES. THE WAY YOU CAN THINK ABOUT THIS IS THAT THERE IS A CLOUD ENVIRONMENT FOR CAPTURING THE DATA STORAGE AND ANALYSIS, AND THIS ALLOWS US TO FOSTER COLLABORATION SO YOU CAN SEE THESE VARIOUS GROUPS OF INVESTIGATORS AND OTHERS WITH THEIR OWN ENTRY INTO THIS ECHO PORTAL, AND THE RESEARCHERS HAVE CONTROLLED ACCESS SO THEY ACCESS ONLY PARTS OF THE CLOUD RELEVANT TO THEIR WORK. ONE EXAMPLE OF SECURITY IS THERE'S TWO FACTOR AUTHENTICATIONS, PROVE YOUR IDENTITY TWICE BEFORE YOU LOG IN. AND THIS ECHOPORTAL, THIS CLOUD-BASED DATA SYSTEM HAS PURPOSE-BUILT SECURITY AND FUNCTIONALITY. SO IT'S IN A GENERAL SENSE, IT'S WHAT'S CALLED FISMA MODERATE, SEVERE RISK OF PERSONALIZED RISK OF PERSONAL INFORMATION BEING COMPROMISED, AND ACTIVITIES ABOUT SECURITY FALL UNDER FISMA. DATA ARE ENCRYPTED, RESTRICTED VAULT, CONTROLLED ACCESS, TRACKING OF USER ACTION, INDEPENDENT SECURITY AUDIT AND CONTINUOUS MONITORING. GOING BACK TO THE KIDS IN ECHO, WE'RE HAPPY THAT THERE IS DIVERSITY IN AGE, SEX, SOCIAL CLASS, RACE/ETHNICITY, INCLUDING A LITTLE BIT OF OVERREPRESENTATION OF AMERICAN INDIAN AND ALASKA NATIVES. TWO COHORTS ARE THE MAJORITY OF NATIVE AMERICAN PARTICIPANTS, ONE IN SOUTH DAKOTA AND THE ONE I'M GOING TO SHOW YOU THE EXAMPLE OF IS COLLABORATION WITH NAVAJO NATION. SO THIS IS THE NAVAJO BIRTH COHORT STUDY, THE PRINCIPAL INVESTIGATORS IS JOHNNY LEWIS AND UNIVERSITY OF NEW MEXICO AND INVOLVES DOCTORS BEGAY AND BEGAY AS COLLABORATORS, YOU CAN SEE ENROLLMENT BY NAVAJO NATION IN THE FOUR CORNERS AREA. THIS IS A STUDY THAT WILL INVOLVE -- WELL, ALREADY IS EXISTING, INVOLVES 400 FAMILIES FROM PRENATAL PERIOD THROUGH 4 YEARS OF AGE. THIS STUDY RECOGNIZES THAT ON NAVAJO NATION BECAUSE OF THE ABANDONED MINES THERE'S A LOT OF EXPOSURE TO DIFFERENT TYPES OF METALS, ESPECIALLY URANIUM, AND HERE YOU CAN SEE ONE OF THE PILES IN THE BACKGROUND. SO IS THE IDEA IS TO EXAMINE RELATIONSHIP OF EXPOSURE TO PREGNANCY, NEURODEVELOPMENT, DEVELOP OF BRAIN AND EXCESS WEIGHT GAIN AND HOW DEVELOPMENT OF IMMUNE SYSTEM EXPLAINS RELATIONSHIPS. THIS IS AN EXAMPLE OF SOMETHING THAT WE THINK IS REALLY APPLICABLE TO THE COMMUNITY. IT ADDRESSES A CONCERN OF NAVAJO, INDIVIDUAL COHORT ANALYSIS, 400, DEPENDING ON WHAT WE FIND COULD SPUR ADDITIONAL MITIGATION ACTIVITIES. AT THE SAME TIME CONTRIBUTES TO BROADER UNDERSTANDING HOW METAL EXPOSURE DURING PREGNANCY OR EARLY CHILDHOOD HAS AN IMPACT ON IMPORTANT CHILD HEALTH OUTCOMES SO IN ECHO-WIDE ANALYSES THAT LOOK AT METALS AND THESE KIND OF OUTCOMES WE EXPECT TENS OF THOUSANDS OF PARTICIPANTS AND WITH THE LARGE SIMPLE CAN SEE HOW RELATIONSHIPS VARY BY A NUMBER OF FACTORS. THAT I KIND OF ECHO-WIDE ANALYSIS INFORMS POLICIES WITH AN IMPACT ON MANY POPULATIONS. I WANTED TO TURN FOR A MOMENT, I'VE BEEN TALKING ABOUT OBSERVATIONAL COMPONENT, COHORTS, NATURALISTIC STUDIES, THE IDeA STATES, PEDIATRIC CLINICAL TRIALS, INTERVENTION COMPONENT, OVERALL GOALS OF IDeA STATES NETWORK TO PROVIDE ACCESS TO STATE-OF-THE-ART CLINICAL TRIALS AMONG MEDICALLY UNDERSERVED AND RURAL POPULATIONS OF CHILDREN. THIS IS IN SERVICE OF BUILDING PEDIATRIC RESEARCH CAPACITY OF THE NATIONAL LEVEL TO CONDUCT CLINICAL TRIALS, SO IT INVOLVES CAPACITY BUILDING OF PROFESSIONAL DEVELOPMENT FOR FACULTY AND INFRASTRUCTURE SUPPORT AND SUPPORT FOR TEAMS OF RESEARCHERS. AND THIS IS IN THE FORMATIVE STAGES SO INPUT FROM YOU IS WELCOMED IN ALL OF THESE BUT I THINK THERE'S SOME SPECIAL POSSIBILITIES WITHIN THE IDeA STATES NETWORK. SO PART OF WHAT WE'RE TALKING ABOUT BEFORE IN CAPACITY BUILDING IS MENTORING EMERGENT SCIENTISTS AND TRAINING AND SUPPORT FOR STAFF. THE IDeA STATES NETWORK INVOLVES 17 CLINICAL SITES AND ITS OWN DATA COORDINATION AND OPERATION CENTER. AND THESE 17 SITES ARE IN IDeA STATES, THIS IS A PROGRAM ACTUALLY THAT'S BEEN GOING ON FOR A COUPLE DECADES AT NIH. AND IT'S A PROGRAM THAT SUPPORTS PROGRAMS IN STATES WITH HISTORICALLY LOW RATES OF NIH FUNDING. SO THESE 17 STATES ARE AMONG THE IDeA STATES. AND AMONG THE ONES IN THE IDeA STATES PEDIATRIC CLINICAL TRIALS NETWORK ARE FIVE WITH HIGH PERCENTAGES OF INDIGENOUS POPULATIONS, WHETHER THAT BE AMERICAN INDIAN, ALASKA NATIVES OR NATIVE HAWAIIANS. IN THE FINAL FEW SLIDES I JUST WOULD LIKE TO SAY HOW WE'RE CONDUCTING OUR WORK WITHIN ECHO. ONE OF THE THINGS THAT WE'VE BEEN TRYING TO FOSTER FROM THE VERY BEGINNING IS A CULTURE OF COLLABORATION, THROUGH ENGAGEMENT AND LISTENING. IT'S A COOPERATIVE AGREEMENT, HALFWAY BETWEEN A GRANT AND CONTRACT. SO NIH REALLY IS IN A PARTNERSHIP ROLE AND A ROLE TO SUPPORT WHAT THE INVESTIGATORS DO TO SET A VISION. WE HAVE A FEW RULES BUT MOST OF WHAT WE WANT TO GET DONE IS LED BY THE INVESTIGATORS THEMSELVES. SO THEY ARE DRIVING THE SCIENCE. YOU CAN SEE THE KICKOFF MEETING AT THE TOP. MOST OF THE WORK GETS DONE IN SMALLER GROUPS. AND OUR INVESTIGATORS ARE NOT ONLY DRIVING THE SCIENTIFIC QUESTIONS BUT ALSO THE CROSS-CUTTING ISSUES LIKE WHAT SHOULD THE DATA SHARING POLICIES BE, THE BIOSPECIMEN POLICIES, PUBLICATION POLICIES, WE THINK ARE UNDERPINNINGS TO DO RESEARCH ENGAGING AND EVERYONE'S SORT OF ROWING IN THE SAME DIRECTION. WE HAVE GUIDANCE BY AN EXTERNAL SCIENTIFIC BOARD, WHICH REPORTS TO THE NIH DIRECTOR VIA COUNCIL OF COUNCILS, ALSO IN DR. ANDERSON'S BAILIWICK AND OUR BOARD INCLUDES DR. BILL FREEMAN FROM NORTHWEST INDIAN COLLEGE. SO IN THE LONG TERM, WE WANT TO CONDUCT INNOVATIVE OBSERVATIONAL INTERVENTION RESEARCH TO ANSWER CRUCIAL QUESTIONS ABOUT CHILD HEALTH AND DEVELOPMENT THAT INFORM PROGRAMS, PRACTICES AND POLICIES, THAT IMPROVE THEIR HEALTH. AND THEN, AGAIN, TO ACHIEVE OUR MISSION OF ENHANCING THE HEALTH OF CHILDREN FOR GENERATIONS TO COME. LET ME RETURN TO THE QUESTIONS I STARTED OUT IN THE BEGINNING. THIS TIME I'M GOING TO START WITH A SPECIFIC AND GO TO THE GENERAL. SO THE SPECIFIC QUESTIONS WE COME TO THE TABLE WITH ARE ABOUT SHARING, ABOUT DATA AND BIOSPECIMENS, AGAIN THIS IS WORK IN PROGRESS, SO YOUR FEEDBACK IS MOST WELCOME. WHAT DATA SPECIMENS TRIBAL COMMUNITIES ARE ABLE TO SHARE. WHAT ABOUT THE IDENTIFICATION ISSUE, CONDITIONS OF USE, PRIVACY, SECURITY AND SAFETY, DURATION, AND GENETICS. AND THEN I'LL JUST LEAVE THIS ONE UP, GENERAL QUESTIONS, WE'RE COMMITTED TO CONSULTATION, WHAT ARE THE BEST WAYS FOR US IN THE PROGRAM OFFICE AT NIH AND OUR INVESTIGATORS TO BUILD RELATIONSHIPS AND COLLABORATE TO ADDRESS CONCERNS. THANK YOU. [APPLAUSE] >> WE HAVE SOME TIME FOR DISCUSSION. THANK YOU SO MUCH FOR THE PRESENTATION, DR. GILLMAN. >> WE'D LOVE TO HEAR YOUR THOUGHTS. IF YOU WOULDN'T MIND INTRODUCING YOURSELVES WHEN YOU SPEAK I'D LOVE TO GET INTRODUCED TO WHO YOU ARE JUST A LITTLE BIT. >> MY NAME IS ALLISON BALL, A MEMBER AT LARGE DELEGATE, AND I'M A MEMBER OF THE (INDISCERNIBLE) CONFEDERATED TRIBES IN WASHINGTON STATE. LOOKING AT THE RESEARCH YOU'RE DOING THIS IS SOMETHING I'M REALLY INTERESTED IN BECAUSE WHEN I RETURNED HOME ABOUT FOUR YEARS AGO WE FOUND OUT THAT IN OUR WELL WATER THAT THEY HAVE HIGH LEVELS OF ARSENIC AND THEY HAVE BEEN DRINKING THAT WELL WATER FOR HOWEVER LONG, AND WE REALLY DON'T KNOW WHAT THE HEALTH CONSEQUENCES ARE, NOBODY'S EVER COME IN AND LOOKED. WE ALSO HAVE IN OUR RIVERS IN CANADA, THEY HAVE THIS TEKOMIKO MINE, THE WATERWAY COMES THROUGH, YOU KNOW, OUR WATERS OF OUR RESERVATION, A LOT OF ENVIRONMENTAL FACTORS ARE AFFECTING OUR TRIBE. THIS IS SOMETHING, YOU KNOW, I DON'T KNOW HOW YOU SELECT THE TRIBES YOU WANT TO WORK WITH BUT THIS IS SOMETHING DEFINITELY I THINK WOULD BE WORTHY. I DON'T KNOW IF YOU DO PRESENTATIONS IN TRIBAL COMMUNITIES OR, YOU KNOW, THERE'S LIKE THE NORTHWEST HEALTH BOARD THAT TRIBES MIGHT BE INTERESTED IN YOU COMING TO PRESENT BECAUSE TRIBES ARE INTERESTED IN ENVIRONMENTAL HEALTH FACTORS, RISK FACTORS AND I THINK THAT'S WHY WE PUT ENVIRONMENTAL ON THE LIST OF PRESENTERS. AND I THINK EACH TRIBE KIND OF DETERMINES AS THEY WANT -- YOU KNOW, WHEN THEY MAKE AN AGREEMENT, IT REALLY IS THEM THAT DECIDE ON THEIR OWN DATA SHARING AGREEMENT, YOU KNOW, SO IT'S SOMETHING THAT I WOULD HESITATE TO SAY THAT ALL TRIBES CAN, YOU KNOW, HAVE THE SAME DATA SHARING AGREEMENT BECAUSE THEY DON'T SO IT WOULD BE PROBABLY EACH PARTICULAR TRIBE YOU WOULD HAVE TO WORK THE DETAILS OUT WITH. BUT I'M DEFINITELY EXCITED ABOUT YOUR WORK. >> THANKS FOR THE COMMENTS. SO ONE REACTION IS THAT WHILE WE DON'T INVOLVE EVERY TRIBE BY ANY MEANS OF COURSE BECAUSE OF THE GRANT-MAKING PROCESS, MANY OF THE ISSUES THAT YOU MAY BRING UP WE HOPE WOULD BE COVERED IN OUR GENERAL ECHO-WIDE COHORT. SO FOR EXAMPLE, THE RELATIONSHIP BETWEEN ARSENIC EXPOSURE IN PREGNANCY AND EARLY INFANCY AND, SAY, NEURODEVELOPMENT COULD BE A REALLY IMPORTANT ANALYSIS THAT DOESN'T INVOLVE SPECIFICALLY PEOPLE IN YOUR TRIBE BUT THE GENERALIZED KNOWLEDGE COULD BE APPLICABLE. DOES THAT MAKE SENSE? YEAH. AND THE SECOND PART IS WHETHER WE'RE WILLING TO VISIT, AND THE GENERAL ANSWER IS YES, WE LOVE TO BE ON THE ROAD, WHETHER IT'S ME OR MY STAFF, AND THAT WILL JUST DEPEND ON THE TIMING. FOR EXAMPLE, IT MIGHT BE BEST TO COME TO TRIBES WHEN WE HAVE SOME RESULTS THAT ARE APPLICABLE. AND THE THIRD PART IS ABOUT DATA SHARING, AND, YES, WE UNDERSTAND ABOUT DIFFERENT TRIBES HAVING DIFFERENT APPROACHES AND POLICIES, AND WE'RE HAPPY TO WORK WITH THOSE THAT ARE WITHIN THE ECHO FAMILY AT THIS POINT AND I THINK, YOU KNOW, HERE IN THE CONSULTATION WE KNOW THE SPECIFIC AGREEMENTS MIGHT BE DIFFERENT, GENERALIZED ADVICE HOW TO APPROACH THOSE THINGS. >> THANK YOU FOR YOUR PRESENTATION. SO I CAN ONLY KIND OF SPEAK FROM THE AREA WHERE I COME FROM, BUT IN TERMS TO BUILD ON WHAT ALLISON SAID I THINK INDIVIDUAL TRIBES OR GROUPS HAVE INDIVIDUALIZED DATA AND SPECIMEN SHARING AGREEMENT BUT THE TWO OTHER COMPONENTS ABOUT THAT, YOU KNOW, IN ADDITION TO DATA MANY -- LIKE I KNOW MY TRIBE WANTS OVERSIGHT OF SCIENTIFIC PUBLICATIONS THAT COME OUT IF THEY SPECIFICALLY CALL OUT ALASKA NATIVE OR AMERICAN INDIAN PEOPLE SO THAT'S ANOTHER CONSIDERATION FOR YOU. BUT THEN THEY ALSO WANT TO KNOW HOW THE INFORMATION IS GOING TO BE RETURNED BACK TO THE COMMUNITY, MOST COMMUNITY MEMBERS DON'T READ SCIENTIFIC PUBLICATIONS, MAYBE THEIR PROVIDERS DO BUT WANTING RESULTS TO COME BACK TO THEIR COMMUNITIES AND PROVIDERS IN A WAY THAT'S USEFUL SO IF THERE'S IMPLICATIONS FOR CLINICAL CARE OR OTHER POLICY DECISIONS THAT THOSE RESULTS ALSO GET RETURNED BACK. AND, YOU KNOW, THAT'S NOT REALLY EMPHASIZED A LOT OF TIMES IN THE RESEARCH ENTERPRISE, BUT IT'S A REALLY IMPORTANT COMPONENT OF PEOPLE KNOWING, BUILDING TRUST, TRANSPARENCY THAT THE RESULTS DO COME BACK, AND ALSO SHOWING THAT THERE CAN BE A BENEFIT TO RESEARCH. AND I'M DENISE FROM ALASKA, IF I DIDN'T MENTION THAT. >> THANK YOU. I WAS GOING TO ASK YOU THAT. YEAH, THANKS FOR THOSE COMMENTS. SO IN TERMS OF RETURNING RESULTS, I SEE THAT IN TWO WAYS. ONE IS RETURNING AGGREGATE RESULTS, SO RESULTS OF OUR RESEARCH, AND THE OTHER IS RETURNING INDIVIDUAL RESULTS. SO IF SOMEBODY CONTRIBUTES A PIECE OF DATA LIKE A LAB TEST AND IT COMES BACK, YOU KNOW, IN A REALLY ABNORMAL LEVEL, WE THINK IT'S OUR DUTY TO REPORT THAT IF IT'S CLINICALLY ACTIONABLE. AND WE'RE DISCUSSING -- STARTING TO DISCUSS WHAT THAT ACTUALLY MEANS. AND RECOGNIZING THE FACT THAT SOMETIMES THE LAB TESTS DON'T GET DONE UNTIL YEARS LATER BECAUSE THEY ARE IN STORED BLOOD BUT WE'RE TALKING RIGHT NOW ABOUT THE GENERIC ISSUE OF RESPONSIBILITY TO OUR PARTICIPANTS. THE OTHER THING IS RETURNING AGGREGATE RESULTS. IN OTHER WORDS, WHAT WE FIND IN OUR PAPERS. BACK TO COMMUNITIES, WELL, REALLY, IT'S BACK TO ALL OF OUR PARTICIPANTS IS WHAT IT IS. SO WE HAVE IN OUR OFFICE A COMMUNICATION SPECIALISTS, BUT AT OUR COORDINATING CENTER, WHICH IS AT DUKE CLINICAL RESEARCH INSTITUTE, THERE'S A WHOLE TEAM OF COMMUNICATIONS SPECIALISTS. RIGHT NOW THEY ARE WORKING ON THE PART THAT'S MORE INTERNAL, BUT WE'VE BEEN TALKING VERY VIGOROUSLY ABOUT WHAT YOU MIGHT CALL THE EXTERNAL. I ACTUALLY DON'T THINK THERE'S THAT MUCH DIFFERENCE BETWEEN INTERNAL AND EXTERNAL. PEOPLE USE INTERNAL TO MEAN INVESTIGATORS, AND EXTERNAL TO MEAN ALL OF OUR OTHER STAKEHOLDERS. AND WE FEEL THAT, YOU KNOW, OUR PARTICIPANTS ARE MAYBE THE NUMBER ONE STAKEHOLDERS IN OUR RESEARCH SO WE'RE COMMITTED TO DOING THAT AND YOU'RE REMINDING US WE NEED TO DO THAT IN A WAY THAT'S ACCESSIBLE. SO WHEN I THINK ABOUT ACCESSIBLE, I NOT ONLY THINK ABOUT LIKE THE SPECIFICS WHICH COULD BE ABOUT LITERACY, BUT ALSO WHAT THE RESEARCH MEANS, RIGHT? SO IT'S NOT JUST A DRY RECITATION OF WHAT WE FOUND BUT WHAT THE POTENTIAL IMPLICATIONS ARE. SO THANKS FOR THAT. >> HI, BEVERLY COOK FROM ST. REGIS TRIBE AND I REPRESENT THE NASHVILLE AREA. WE -- SO IN BUILDING RELATIONSHIPS WE HAVE IN OUR PARTICULAR TRIBE, WE HAVE A RELATIONSHIP WITH SUNY ALBANY SCHOOL OF PUBLIC HEALTH AND THE DEPARTMENT OF HEALTH DISPARITIES. THAT RELATIONSHIP HAS BEEN BUILT OVER THE LAST 30 YEARS, THEY ARE PRETTY MUCH THE ONLY ONES THAT DO RESEARCH ON OUR TERRITORY, AND IN SOME OF THE OTHER TRIBES AS WELL IN NEW YORK STATE. AND IT WAS A LEARNING PROCESS, YOU KNOW, WHO THEY HAVE LEARNED HOW TO NAVIGATE THE COMMUNITY AND IN STEP WITH SOME OF THE THINGS THAT DENISE SAID, THE REPORTING, YOU KNOW, ALWAYS COMES TO THE COMMUNITY FIRST. THE PUBLICATIONS INCLUDE A CO-INVESTIGATOR AND THAT CAN EITHER BE OUR ENVIRONMENTAL DEPARTMENT OR INDIVIDUALS WHO ACTUALLY HELP IN THE STUDY, COMMUNITY MEMBERS, WE ENCOURAGE THEM TO UTILIZE COMMUNITY MEMBERS, ESPECIALLY WHEN THERE'S INTERVIEWS THAT ARE DONE IN THE COMMUNITY, THAT IT'S OUR OWN PEOPLE THAT ARE TRAINED TO DO THAT. A SCIENTIST AND IT'S HELPFUL IF IT'S NOT. YOU GET MORE INFORMATION THAT WAY. BUT THE RETURNING OF THE INFORMATION AND RETURNING OF ANY SPECIMENS AT THE COMPLETION OF THE STUDY IS ALSO IMPORTANT, AND IS ONE OF THE FIRST QUESTIONS THAT INDIVIDUALS, IN TRIBAL LEADERS, ALL THOSE IN BETWEEN ARE GOING TO ASK ABOUT. OUR TRIBE IS NOT BIG, BUT WE HAVE BIG ISSUES ENVIRONMENTALLY WITH ENVIRONMENTAL TOXINS FROM GENERAL MOTORS, ALCOA, REYNOLDS, THAT ARE ALL ADJACENT TO OUR TERRITORY UPWIND, UPRIVER. SO THAT SCENARIO I'M SURE IS PLAYED OUT IN OTHER PLACES AROUND THE PLANET, AND I THINK EVEN ALASKA HAS SIMILAR ISSUES THOUGH THEY DON'T HAVE ANY INDUSTRIES AROUND THEM SO I THINK THAT THE SIZE OF THE COMMUNITY, ESPECIALLY INDIAN COMMUNITIES, SHOULDN'T DISQUALIFY US FROM BEING IMPORTANT INDICATOS OF, YOU KNOW, WHAT CAN HAPPEN. AND AROUND THE REST OF THE WORLD, AND I THINK IT'S SOMETIMES HARD TO GET RESEARCHERS OR POLITICIANS OR ANYBODY TO RECOGNIZE THAT JUST BECAUSE IT'S HAPPENING TO US DOESN'T MEAN IT ISN'T HAPPENING TO THEIR CONSTITUENTS AS WELL. WE ALSO HAVE SOMETIMES CULTURALLY SIGNIFICANT CHALLENGES. FOR INSTANCE, IN WORKING WITH CHILDREN, YOU OFTEN HAVE INFORMAL FAMILY RELATIONSHIPS, OR CUSTODY ISSUES, THAT DON'T FOLLOW THE REGULAR RULES OR COURT-ISSUED, YOU KNOW, CUSTODY RULES AND SO ON. SO, YOU KNOW, CONSENT CAN BE AN ISSUE, AND I GUESS WHAT I'M TRYING TO SAY IS GETTING TO LEARN THE COMMUNITY THAT YOU'RE WORKING WITH AND ALL OF ITS PECULIARITIES IS IMPORTANT AND DESERVES RESPECT BUT, YOU KNOW, I JUST MAKE, YOU KNOW, A PLEA FOR THE SMALLER TRIBES THAT REALLY COULD GIVE YOU SOME VALUABLE INFORMATION, AND IT'S ALSO IMPORTANT TO THE TRIBES THAT THAT INFORMATION SOMEHOW TRANSLATES INTO HELP BECAUSE WE CAN ALSO BE STUDIED TO DEATH AND IT'S VERY INTERESTING FOR THE RESEARCHERS AND, YOU KNOW, THEY GET TO PUBLISH AND ALL THAT, BUT WE'RE STILL IN THE SAME SITUATION THAT WE WERE BEFORE. AND ESPECIALLY WHEN WE'RE UP AGAINST THE CORPORATIONS AND SCIENTISTS HAVE TO BATTLE TO GET PUBLISHED IN THE FIRST PLACE BECAUSE THERE'S SO MUCH PUSH BACK. ANYWAY, WE JUST WOULD REALLY WELCOME A STUDY THAT CAN PROVE WHAT WE ALREADY KNOW BECAUSE WE LIVE IT EVER DAY AND THEN HELP US DO SOMETHING ABOUT IT. GOOD GREAT, THANKS. SO THANKS FOR ALL THOSE COMMENTS. ONE OF THE LOUDEST THINGS I HEARD YOU SAY WAS 30 YEARS. AND SO WE RECOGNIZE AND VOICE VERY OFTEN THAT TRUST TAKES TIME. OF COURSE IN ECHO WE'RE TRYING TO BUILD TRUST WHICH TAKES TIME AND HAVE EARLY RESULTS. WE'RE TRYING TO ATTEND TO BOTH OF THOSE THINGS. IN TERMS OF THIS BUILDING TRUST, I HAVE A COUPLE THOUGHTS ABOUT THAT. I MENTION THE THE TWO COHORTS, OBSERVATIONAL STUDIES THAT ACCOUNT FOR MOST OF THE AMERICAN INDIAN ALASKA NATIVE PARTICIPANTS. ONE I SHOWED YOU THE EXAMPLE OF WAS THE NAVAJO BIRTH COHORT STUDY, THE OTHER ONE IS IN SOUTH DAKOTA. MY UNDERSTANDING IS THAT THE INVESTIGATORS WHO LEAD THE PROJECTS HAVE LONG STANDING RELATIONSHIPS AND STAFF, LONG STANDING RELATIONSHIPS WITH THE TRIBES THEY ARE DEALING WITH AND STAFF FROM THOSE TROOPS. ON THE COHORT SIDE I THINK THERE'S MORE WORK TO BE DONE, BUT THERE'S ALREADY AN INVESTMENT. ON THE IDeA STATE SIDE THE INTERVENTION COMPONENT I ACTUALLY THINK THERE'S OPPORTUNITY BECAUSE THE INVESTIGATORS IN THE STATES THAT I SHOWED, MONTANA, NEW MEXICO, OKLAHOMA, ALASKA, HAWAII, THEY HAVE CATCHMENT AREAS THAT INVOLVE MANY DIFFERENT TRIBES AND THE WAY I'M THINKING ABOUT THIS NOW, YOUR INPUT, IS THAT SO, YOU KNOW, WHAT TRIALS SHOULD THESE STUDIES BE DOING? WELL, RIGHT NOW THE STEERING COMMITTEE IS CONCERNING ITSELF WITH INITIAL TRIALS TO GET SOME EARLY WINS, BUT WHAT ABOUT THE IDEA OF ENGAGING TRULY WITH NATIVE AMERICANS, SO THAT THEIR IDEAS ARE AT THE TABLE AT THE VERY BEGINNING, SO THAT IN THE FUTURE THE TRIALS THAT ARE DONE ARE REALLY PART AND PARCEL OF COMMUNITY-BASED PARTICIPATORY RESEARCH, SO IT'S A REAL PARTNERSHIP. SO I THINK THAT KIND OF THING, YOU KNOW, BECAUSE THE IDeA STATES NETWORKS IS MORE IN THE FORMATIVE STAGES AND COHORTS ARE EXISTING WE CAN TAKE LESSONS FROM COHORTS AND YOU AND APPLY TOMORROW THAT THE IDeA STATES. >> ONE THING I WANTED TO PUT ON THE TABLE I RAISED AT OUR INITIAL CONVERSATION BUT IN THE WAYS THAT YOUR GROUP AND YOUR TEAMS ARE THINKING ABOUT HEALTH OUTCOMES AND WHAT INPUTS INFLUENCE THOSE, I KNOW THERE'S A REAL TENDENCY UNFORTUNATELY TO REALLY OVEREMPHASIZE INDIVIDUAL HEALTH FIGURES TO THE EXCLUSION OF SYSTEMIC AND ENVIRONMENTAL FACTORS AND I THINK WE TALKED ABOUT THE FACT WITH THIS RESEARCH STUDY THERE'S A REAL OPPORTUNITY TO GET AT, YOU KNOW, MULTIPLE PIECES AND I KNOW THERE WAS A SLIDE THAT YOU HAD LOOKING AT MATERNAL AND CHILD HEALTH OUTCOMES AND ALSO FOOD, GROCERY CHOICES. >> UH-HUH. >> I THINK INDIVIDUAL CHOICES OBVIOUSLY PLAY IN, BUT WHAT THE ECOLOGY AND SYSTEM ACCESS, WE TALK ABOUT A LOT ON THIS COMMITTEE, IS REALLY IMPORTANT ON THAT FRONT. AND SIMILARLY I WANT TO BRING IN THE VOICES AND RECOGNIZE THE EXPERTISE AROUND THIS TABLE AND BEYOND WITH OUR TECHNICAL ADVISORS, DR. TISHA SOLOMON IN PARTICULAR WHO IS HERE, THERE SHE IS, HAS DONE GREAT WORK ON CHILD HEALTH STUDIES, LARGE SCALE, SO I WOULD ENCOURAGE YOU TO CONNECT WITH HER BUT I ALSO WANTED TO YIELD TIME TO MY TECHNICAL ADVISER DR. DINA ROUND WHO HAD A QUESTION. DR. DINA, WOULD YOU JOIN US AT THE TABLE? >> THANKS, MALEA, FOR THE COMMENTS. I CAME FROM A MEETING OF THE NATIONAL COLLABORATIVE FOR OBESITY RESEARCH YESTERDAY. WE TALK ABOUT RESTRICTIVE ENVIRONMENT IN WHICH PEOPLE TRY TO CHANGE BEHAVIORS, IT'S TRUE FOR MANY DIFFERENT OUTCOMES, AND THAT'S WHY WE TRY TO THINK ABOUT THE ENVIRONMENT BROADLY, THE SOCIAL AND BUILT AND FAMILY AND MEDICAL CARE ENVIRONMENTS, IN ADDITION TO INDIVIDUALS. I KEEP PUSHING THAT. I KEEP PUSHING IT >> HI. >> THANK YOU FOR THE TIME. >> WE MET ON THE PHONE, DIDN'T WE? >> YES, YES, GOOD MORNING. I'M DINA ROUNDHAM, TECHNICAL ADVISER FOR DR. VILLEGAS. THANK YOU FOR THE PRESENTATION. IT DEMONSTRATES YOU LISTENED TO INFORMATION ON THE PHONE CALL AND I WAS GLAD TO SEE DETAIL AROUND THE NAVAJO COHORT STUDY. I HAD A QUESTION ABOUT ONE OF THE SLIDES YOU PRESENTD INDICATES WITH THE LARGE SAMPLE OF CHILDREN IT WILL BE IMPORTANT TO SEE HOW RELATIONSHIPS VARY BY MOTHERS OR CHILD GENES WITH A QUESTION MARK AND SO I WONDERED IF YOU COULD TELL US MORE ABOUT HOW YOU'RE THINKING AROUND DECISIONS FOR INCLUSION OF GENETIC DATA, ESPECIALLY WITH THE AMERICAN INDIAN AND ALASKA NATIVE COHORTS AND HOW SOME CONVERSATIONS HAVE BEEN DEVELOPING AND MODELS YOU MIGHT BE LOOKING AT FOR MANAGEMENT OF BIOSPECIMEN DATA. >> I'M LOOKING FOR YOUR INPUT AND ADVICE IN RELATION TO AMERICAN INDIAN AND ALASKA NATIVE IN PARTICULAR. I CAN TELL YOU WHAT THE OVERALL GOAL IS FOR ECHO. AND THAT IS TO CREATE A GENETICS CORE ALONG WITH OUR OTHER CORES, THAT WILL MEASURE SOME ELEMENT OF GENETICS, PROBABLY GENETIC -- GENOME-WIDE ASSOCIATION STUDY TYPE OF GENES, GWAS, ON MOTHERS AND CHILDREN. AND WE RECOGNIZE THE SPECIAL NATURE OF GENETIC INFORMATION. WE RECOGNIZE THERE'S ALREADY A GENOME DATA SHARING POLICY WITHIN NIH, THAT HAS BEEN PREEXISTING BEFORE THE OVERALL DATA SHARING POLICIES. AND THIS IS WHERE I TURN TO YOU TO ASK HOW AND WHEN WE SHOULD COLLABORATE WITH YOUR COMMUNITIES TO ENSURE THAT YOUR NEEDS ARE BEING MET WHEN WE MOVE FORWARD BECAUSE THE GENETICS CORE WON'T COME ON BOARD UNTIL AT LEAST FY 18 AND MAYBE FISCAL YEAR 19. SO WE HAVE TIME >> AND JUST A FOLLOW-UP QUESTION, I'M AWARE THERE ARE SOME WORKING GROUPS FORMING WITHIN THE ECHO MANAGEMENT, PROGRAM MANAGEMENT, SO I'M AWARE OF TRIBAL WORKING GROUP I BELIEVE AND BIOSPECIMEN WORKING GROUP AND BOTH OF THOSE INVOLVE SOME OF THE INVESTIGATORS FROM THE TRIBAL COHORTS, IS THAT CORRECT? >> YES. SO WE HAVE DATA SHARING, BIOSPECIMEN IS LED BY AMY ELLIOTT AND ONE OTHER INVESTIGATOR AND SHE'S THE P.I. OF THE SOUTH DAKOTA STUDY, SHE'S AT STANFORD RESEARCH INSTITUTE AND WORKS WITH THE OGALALA SIOUX. WITHIN OUR ENGAGEMENT WORKING GROUP WE DO HAVE SOME SUBCOMMITTEES, I DON'T THINK THERE'S ONE PARTICULARLY ON TRIBAL AFFAIRS YET, BUT THAT'S A POSSIBILITY. >> JUST ONE MORE BRIEF COMMENT. I JUST WANTED TO SAY THAT I APPRECIATED THE -- ONE OF THE SLIDES WHERE YOU POINTED OUT THE IMPORTANCE OF MATERNAL STRESS ON THE -- YOU KNOW, ON THE CHILDREN OR ON THE FETUS, AND SO I JUST WANTED TO GIVE MY COUSIN GUDJI COOK A PLUG. SHE ALWAYS SAYS WOMAN IS THE FIRST ENVIRONMENT SO THOSE EXPOSURES, EXPERIENCES THAT THE MOTHER, YOU KNOW, AND HOW THEY IMPACT THE BABY THAT SHE'S CARRYING IS REALLY IMPORTANT IN TERMS OF NOT ONLY THE ENVIRONMENTAL EXPOSURES THAT MANY OF US HAVE EXPERIENCED BUT ALSO -- YOU KNOW, IMPACTS OF TRAUMA AND STRESS ON THE MOTHER AND EVEN THROUGH THE GENERATIONS SO I'M REALLY EXCITED ABOUT THAT AND ALWAYS HAPPY WHEN THAT'S A FOCUS. >> YEAH, THANKS FOR THAT COMMENT. MATERNAL STRESS I THINK LEADS BACK INTO THIS CONVERSATION ABOUT WHAT IS INDIVIDUALS -- WHAT'S AN INDIVIDUAL IN CONTROL OF AND WHAT'S SOCIETAL. AND I THINK OF STRESS AS ONE OF THOSE SOCIETAL FACTORS. STRESS CAN EMBED IN YOUR BIOLOGY NO MATTER WHAT YOUR BEHAVIORS ARE. I'M THE CO-AUTHOR ON A PAPER AND LAST YEAR GAVE A TALK CALLED "DON'T BLAME THE MOM." SO OFTEN I THINK WHEN WE TALK ABOUT PRENATAL FACTORS AND THE MOTHER IS -- THE FETUS IS INSIDE THE MOTHER AND IT'S WHAT THE MOTHER DOES THAT, YOU KNOW, CAUSES THE BABY TO HAVE A BAD OUTCOME, WE TEND TO BLAME THE MOTHER FOR INDIVIDUAL BEHAVIORS THAT ARE REALLY NOT THAT MUCH UNDER HER CONTROL. AND I THINK STRESS IS A GOOD EXAMPLE OF SOMETHING THAT WE CAN INVESTIGATE THAT'S USUALLY NOT UNDER INDIVIDUAL CONTROL. COPING MAYBE, BUT STRESS IS REALLY A SOCIETAL FACTOR. >> MR. PHELPS? >> THANK YOU, DR. GILLMAN, FOR YOUR PRESENTATION. I'M WALTER PHELPS WITH (INDISCERNIBLE) AND I HAVE MY ADVISER HERE, TECHNICAL ADVISER, I'LL GIVE HIM A LITTLE BIT OF TIME IN A BIT. I GUESS MY THINKING IS IF YOU LOOK AT THE MAP THAT YOU SHOWED OF NAVAJO, MAYBE EVERYBODY CAN LOOK AT IT, I'LL PINPOINT MY COMMUNITIES FOR YOU. WHICH PAGE WAS IT ON HERE? >> 17. >> 17. OH, THERE, OKAY. THERE'S THE SCREEN THERE. >> WHICH IS YOUR -- >> MY CHAPTER IS THE FAR SOUTHWEST CORNER, SEE THAT? BLUE OR WHITE. >> RIGHT DOWN THERE? >> YEAH. GO NORTH. THAT CLUSTER, CAMERON, SPRINGS, THE BLUE WITH THE -- YEAH, THAT BLACK LINE, THOSE BLACK LINES, THAT'S COAL MINE AND CAMERON TO THE LEFT RIGHT THERE. THOSE ARE MY COMMUNITIES. THOSE ARE FIVE COMMUNITIES. ONE OF THE HIGHEST LEVELS OF URANIUM CONTAMINATION IS THAT, I ASSUME THAT'S WHAT THAT REPRESENTS, THE BLACK LINES. >> UH-HUH. >> SO MY CONSTITUENTS BASICALLY LIVE AND BREATHE THAT STUFF DAY IN AND DAY OUT. SO WE WORK EXTENSIVELY WITH U.S. EPA AND THERE'S EVEN MORE CONTAMINATIONS IN NEW MEXICO AND FOUR CORNERS AREA UP NORTH AS WELL. BUT THERE'S SUPERFUND SITES NORTH OF TUBA CITY ALSO WHERE URANIUM MINE RECLAMATIONS ARE BEING DONE. SO THE EXTENT OF URANIUM IS QUITE EXTENSIVE ON NAVAJO, AND THEN THE OTHER THING IS I GUESS WHEN I THINK ABOUT WHAT BROUGHT THIS PROGRAM INTO EXISTENCE VERSUS CONTAMINATION, THE OTHER IS WATER. SO -- OR MINERALS, LIKE URANIUM. SO IN MY MIND, I'M THINKING, SO AT THE END OF THE DAY WHEN YOU FINISH THESE STUDIES, WILL THIS INFORMATION HELP EPA OR IHS? I MEAN, IHS FUNDS WATER INFRASTRUCTURE FOR TRIBAL COMMUNITIES THROUGH PUBLIC LAW 86-121. WITH U.S. EPA THERE'S A TRIBAL WATER SET-ASIDE PROGRAM THAT ALSO FUNDS WATER DEVELOPMENT PROJECTS IN AREAS THAT ARE CONTAMINATED THAT MEET THAT CRITERIA. SO THAT'S WHY WE ARE ABLE TO TAP INTO EPA MONEY THERE, IHS ALSO, WE COORDINATE WITH THEM, BUT WE'RE STILL STRUGGLING. WE STILL HAVE NOT MADE A CONNECTION BETWEEN THE WATER, WHERE THE WATERS THE PUREST IS DOWN IN LOOP, THE FAR SOUTHWEST CORNER, SO WE'RE TAKING WATER FROM THERE. WE'VE JUST INVESTED $21 MILLION OF NAVAJO NATION MONEY TO EXTEND WATER FROM LOOP EASTWARD TOWARDS DELCON AND IHS IS GOING TO GIVE US $15 MILLION. WE'VE GOT $35 MILLION PROJECT THAT'S STARTING RIGHT THERE. AND THEN WE HAVE WATER COMING FROM LAKE POWELL, WE'RE HOPING TO TAKE THAT WATER SOUTH TOWARDS TUBA CITY, DOWN INTO CAMERON, I MEAN WE'RE TALKING ABOUT MILLIONS OF DOLLARS OF WATER INFRASTRUCTURE AND HOPI WANTS THAT SAME WATER AS WELL. SO IT'S BASICALLY SOMETHING THAT WE THOUGHT WAS GOING TO GET FUNDED THROUGH WATER RIGHTS SETTLEMENT BUT IT'S -- RIGHT NOW WE'RE STILL BACK IN NEGOTIATIONS AGAIN. BUT I GUESS MY CURIOSITY IS HOW IS THIS INFORMATION -- I KNOW YOU'RE KIND OF FOCUSING ON MOMS AND BABIES AND PREGNANCIES AND THE IMPACTS ON INFANCIES, BUT IT GOES BACK -- TO ME IT GOES BACK TO WATER, YOU KNOW. HOW ARE WE GOING TO IMPROVE WATER SYSTEMS IN THESE RURAL AREAS BECAUSE IT'S VERY EXPENSIVE, SO I'M HOPING THESE STUDIES WILL BE VERY HELPFUL AND THE SOONER SOME OF THIS INFORMATION COMES BACK TO US TO DEMONSTRATE IF IT'S GOING TO DEMONSTRATE THAT THERE IS A CONNECTION HERE AND THERE'S A NEED HERE WE NEED TO SEND THAT MESSAGE BACK TO CONGRESS AS SOON AS POSSIBLE BECAUSE RIGHT NOW, ESPECIALLY RIGHT NOW THERE'S MEETINGS GOING ON RIGHT NOW ABOUT INFRASTRUCTURE TO FUND PRESIDENT TRUMP'S TRILLION DOLLAR INFRASTRUCTURE SO WE'RE INTERESTED AND THIS INFORMATION WOULD BE HELPFUL. MY QUESTIONS ARE WHERE ARE YOU IN THE STUDY FOR NAVAJO, OR FOR ALL THE OTHERS? WHERE ARE YOU? HOW MANY YEARS ALONG ARE YOU? WHEN ARE YOU GOING TO FINISH OUT YOUR REPORTS AND IS THERE MORE MONEY COMING? HAVE YOU REACHED YOUR 50,000-CHILDREN GOAL YET? ARE YOU AT 50,000? ARE YOU BEYOND 50,000? ARE YOU HALFWAY THERE? BECAUSE FOUR HUNDRED, I'M THINKING YOU COULD REACH 50,000 JUST IN MY COMMUNITIES, YOU KNOW, I SHOULD SAY ALL NAVAJO, NOT JUST MY COMMUNITIES. BUT I GUESS I'M PASSIONATE BECAUSE I KNOW THAT -- I'M HOPING THAT WE CAN MAKE A CONNECTION BACK TO WATER. THE ONLY TROUBLE IS WHEN WE GO BACK TO THE WHOLE NATIVE AMERICAN HEALTH PRIORITIES, OUR WATER INFRASTRUCTURE PRIORITY, USUALLY NUMBER ONE FOR NAVAJO, TRICKLES BACK DOWN TO MAYBE NUMBER TEN, SO THAT'S THE ONLY TROUBLE WE HAVE, EVEN THOUGH FROM NAVAJO WE SAY THIS IS OUR NUMBER ONE NEED, IT GOES BACK TO NUMBER TEN OR MORE BECAUSE, YOU KNOW, COLLECTIVELY WITH ALL THE FEDERALLY RECOGNIZED TRIBES THERE'S OTHER ISSUES THAT BECOME MORE PRIORITY RATHER THAN, YOU KNOW, INFRASTRUCTURE, WATER INFRASTRUCTURE. BUT THIS, TO ME, IS WATER INFRASTRUCTURE. THIS IS JUSTIFICATION FOR WATER INFRASTRUCTURE. BUT IF I CAN GIVE SOME TIME TO MY TECHNICAL ADVISER MAYBE HE CAN SHARE HIS COMMENTS. >> THANKS FOR THE COMMENTS. JUST AS A GENERAL REACTION, I WOULD SAY THAT OUR JOB IN ECHO IS TO PROVIDE THE BEST SCIENTIFIC INFORMATION THAT POLICYMAKERS CAN TAKE FOR ACTION. AND SO WE WANT TO ASK QUESTIONS LIKE THE ONES YOU'RE TALKING ABOUT THAT WILL INFORM THOSE POLICIES. SO WE DON'T WANT TO ASK QUESTIONS JUST BECAUSE THEY ARE INTERESTING, THERE ARE TONS OF INTERESTING QUESTIONS, I'M SURE WE CAN DO THAT. BUT WE WANT TO PRIORITIZE QUESTIONS THAT WILL INFORM PROGRAMS AND POLICIES. NOW, I CAN IMAGINE IF, FOR EXAMPLE, WE LOOK AT RELATIONSHIPS OF METALS WITH NEURODEVELOPMENT, IN ONE TRIBE THEY COULD SAY, WELL, THIS IS WHERE THE METALS COME FROM, AND THIS IS HOW WE WOULD LIKE TO INFORM THE POLICY IN OUR TRIBE. AND NAVAJO, MAYBE IT'S MORE ABOUT THE WATER. SO THAT'S HOW I SEE TAKING THE RESEARCH AND MAKING IT APPLICABLE TO THE COMMUNITIES. AND HERE'S THE SLIDE THAT SHOWS WHERE WE ARE. SO-CALLED UG3 PHASE THROUGH THE MIDDLE OF 2018 IS REALLY OUR PHASE OF GET TO KNOW YOU AND PILOT PROJECTS BUT WE'RE STILL LOOKING FOR SCIENTIFIC VALUE WITHIN THIS FIRST TWO YEARS. MOST OF THE MAJOR QUESTIONS WILL BE ADDRESSED AND ANSWERED FROM 2018 FORWARD. >> TIME FOR TWO MORE. HERE AND PRESIDENT TILLBACK. >> GOOD MORNING. I'M DAVID FOLEY, EPIDEMIOLOGIST FROM THE NAVAJO EPIDEMIOLOGY CENTER HERE AS TECHNICAL ADVISER, A LOT OF THE QUESTIONS OR COMMENTS HAVE ALREADY BEEN ADDRESSED. BUT I'M INTERESTED IN KNOWING HOW EASILY MAYBE EMERGING THREATS CAN BE INCORPORATED INTO THE STUDY, FOR INSTANCE IN 2015 MILLIONS OF GALLONS OF WATER WERE RELEASEDDED FROM A MINE IN COLORADO THAT IMPACTED WATER SYSTEMS ON THE NAVAJO NATION AND THAT WATER CONTAINS MANY HEAVY METALS SO I'M CURIOUS TO KNOW IF THAT DATA CAN BE PICKED UP IN THE NAVAJO BIRTH COHORT AND ISSUES CAN BE ADDED AS THEY COME UP. ON THAT CHART IT SHOWS ENROLLMENT UP TO 2022, I'M CURIOUS HOW FAR INTO THE FUTURE THIS STUDY PLANS ON GOING AND JUST ECHOING WHAT HAS BEEN SAID, EXPANSION TO INCLUDE OBVIOUSLY WE WOULD LOVE TO HAVE MORE NAVAJO INCLUSION BUT FOR NATURE AMERICAN INDIAN AND ALASKA NATIVES IN GENERAL CAN THAT BE EXPANDED TO HAVE A HIGHER PERCENTAGE IN THE GOAL OF 50,000, AND ANOTHER ISSUE OF CONCERN ON THE NAVAJO NATION WOULD BE MAYBE FOOD SECURITY. WE KNOW THAT NUTRITION IS SO VITAL TO THE HEALTH OF MOTHER AND BABY, AND WE HAVE LOTS OF AREAS ON THAT NAVAJO NATION WHEN YOU LOOK AT THAT MAP, JUST SHOWING -- REFLECTING THE BURDEN. WE TALK ABOUT HEALTH CARE ACCESS BUT HAVE A HUGE ISSUE WITH NUTRITIONAL FOOD ACCESS ON THE NAVAJO NATION WHERE MANY FAMILIES HAVE TO TRAVEL FOR SEVERAL HOURS TO GET TO A GROCERY STORE THAT HAS FRESH PRODUCE SO THAT'S ALSO OF GREAT CONCERN. I'M INTERESTED TO KNOW IF THERE'S BEEN ANY LOOK IN THESE COHORTS AT TRADITIONAL FOODS AND IMPACT OF THOSE. THANK YOU. >> WHEN IT GETS TO BE THREE ISSUES I'LL NEED YOU TO TEE THEM UP AGAIN BECAUSE I DIDN'T WRITE THEM DOWN. AS FAR AS THE LAST ONE, I HAD THE PLEASURE FIVE YEARS AGO OF WORKING FOR A WEEK AT SHIP ROCK, IN OBESITY AND GESTATIONAL DIABETES AT THE HOSPITAL, BUT ALSO TRAVELING WITH NURSES AROUND THE AREA. AND SO -- AND TO TRADITIONAL AREAS, IT BECAME OBVIOUS WITH ONE'S EYES THE ACCESS TO WHAT WE MIGHT CALL THE BUILT ENVIRONMENT AND HOW CHALLENGING THAT IS SO THANKS FOR BRINGING THAT UP. AND, YES, THERE ARE COHORTS WHO ARE INTERESTED IN FOOD SECURITY. TRADITIONAL DIETS, SO I COULD TALK FOR AN HOUR ABOUT NUTRITIONAL EPIDEMIOLOGY. THAT'S SORT OF WHERE I GOT MY TRAINING. SO THE ANSWER IS COMPLICATED BECAUSE DIETARY ASSESSMENT IS VERY DIFFICULT AS YOU PROBABLY KNOW. BUT ONE HOPES. LET'S SEE. EMERGENT THREATS, RIGHT? SO ONE OF THE GOOD THINGS ABOUT COHORT STUDIES, THE WAY THEY ARE PLANNED AND CONDUCTED THESE DAYS, IS THAT PEOPLE STORE BIOSPECIMENS, SO NOT ONLY STORE DATA FROM SELF REPORTS, MEDICAL RECORDS, ET CETERA, BUT WE ALSO STORE BIOSPECIMENS. WHICH OF COURSE BRINGS UP THE BIOSPECIMEN SHARING WE TALK ABOUT SO THERE'S RISK AND REWARD, RIGHT? SO THE REWARD PART IS THAT IF FIVE YEARS OR TEN YEARS DOWN THE ROAD YOU SAY, OH, WE HAVE A NEW QUESTION, AND WE CAN MEASURE SOMETHING IN A STORED BIOSPECIMEN FOR PREGNANCY, INFANCY, EARLY CHILDHOOD, WE CAN GET A HANDLE ON THOSE ISSUES. AND THEN THE FIRST QUESTION I FORGET. WHAT WAS YOUR FIRST ISSUE? OH, MAYBE THAT WAS THE FIRST. WHAT WAS THE SECOND? >> THE OTHER WAS EXPANSION OF COHORT FOR NATIVE AMERICANS, HOW LONG -- (INAUDIBLE). >> SO INITIALLY, IT'S A SEVEN-YEAR PROJECT. PROGRAM I SHOULD SAY. AND ONE IS ALWAYS HOPEFUL THAT IT COULD GO INTO THE FUTURE. THE FUNDING FOR THE COHORTS AND FOR IDeA STATES NETWORK WHICH BY THE WAY THAT PART IS FOUR YEARS CURRENTLY, IS ALL DISPERSED, SO WE DON'T EXPECT ANY CORE FUNDING FROM ECHO TO EXPAND. HOWEVER, ONCE THE DATA PLATFORM IS UP AND RUNNING I IMAGINE THERE WILL BE INVESTIGATORS THROUGHOUT INTERESTED IN PROVIDING DATA THAT CAN PROVIDE ANSWERS, THAT RAISES POSSIBILITY FOR PEOPLE TO WRITE GRANTS TO USE DATA ECHO COHORTS COLLECTED AND THOSE MIGHT BE TRAINING GRANTS, MIGHT HAVE JUNIOR INVESTIGATORS, AND IN FACT WE DO -- I SHOULD SAY THAT - WE DO HAVE AN OPPORTUNITY AND INFRASTRUCTURE FUND COMING ON BOARD NEXT YEAR WHICH IS TO REALLY HELP JUNIOR INVESTIGATORS ALONG THE WAY. BUT AS I WAS SAYING, PEOPLE CAN WRITE TRAINING GRANTS, RESEARCH GRANTS, SO I IMAGINE THAT'S HOW THE PURVIEW OF ECHO IS GOING TO EXPAND OVER TIME. SO DID I ANSWER YOUR QUESTIONS? >> FINISHING UP, BACK TO YOU. >> PRESIDENT KILLSBACK, NORTHERN CHEYENNE, NORTHERN MONTANA. THANK YOU FOR YOUR PRESENTATION. IT'S MORE OF A COMMENT AND I THINK OUR REGION BEING THAT OUR TRIBES IN OUR AREA DO NATURAL RESOURCE DEVELOPMENT, AND WE'RE ONE OF THE ONLY TRIBES THAT DOESN'T BECAUSE OF OUR HIGH ENVIRONMENTAL STANDARDS FOR OUR CLASS ONE AIR AND WATER QUALITY TREATMENT AS A STATE FOR OUR WATERWAYS AND ON OUR RESERVATION. SO IN OUR REGION WE WOULD BE LOOKING FORWARD TO APPLICATION OF THE DATA, THE FINDINGS, THE RESEARCH WILL PRESENT SO THAT WE CAN THEN STRENGTHEN OUR ARGUMENT, AND LIKE WHAT CHIEF COOK SAYS TO VALIDATE WHAT WE ALREADY KNOW, THAT THIS SORT OF ACTIVITY ON MOTHER EARTH HAS DEFINITE HEALTH IMPACTS AND, AGAIN, LEARNING FROM THE NAVAJO. TODAY THEY ARE DOING A MARCH. WATER IS SACRED. WATER IS LIFE. AND RARELY DO TRIBES EVEN IN MY REGION REALLY PRIORITIZE ENVIRONMENTAL HEALTH, AND THIS IS A WAY FOR I THINK EVEN ON THE POLICY SIDE AND YOU WANT TO SAY SPIRITUAL SIDE FOR US TO RECONNECT WITH THE LAND, THAT WE ARE ITS CARETAKERS, AND THAT THIS KIND OF RESEARCH IS ONLY GOING TO BENEFIT US IN THE LONG RUN WHEN WE ARE DEVELOPING POLICY, WHETHER THAT'S ENVIRONMENTAL, HEALTH OR EVEN ECONOMIC DEVELOPMENT POLICY. AND FINDING WAYS TO MESH THOSE ALL TOGETHER TRIBALLY. SO THOSE ARE MY COMMENTS IN RELATION TO HOW WE'RE GOING TO BE LOOKING FORWARD TO WHAT THE STUDY DOES AND WHAT THE COHORT SHOWS US. SO I JUST WANTED TO THANK YOU FOR THAT. >> I THINK YOU JUST BROUGHT OUT SOMETHING THAT I THINK WE NEED TO LISTEN TO. AND THAT, YOU KNOW, WE GET TRAINED IN RESEARCH METHODS. IT DOESN'T USUALLY INCLUDE SPIRITUALITY AS ONE OF THE IMPORTANT COMPONENTS. AND I THINK IT WOULD BE -- FOR US TO LISTEN TO YOU ABOUT THE MEANING OF THE RESEARCH FOR YOUR CULTURAL TRADITIONS AND TO TRY TO DO OUR RESEARCH IN A WAY THAT ENHANCES THAT WOULD BE REALLY GOOD. I THINK THAT'S A WAY WE'RE LOOKING TO COLLABORATE SO WE'RE LOOKING TO LEARN FROM YOU ABOUT WHAT THOSE TRADITIONS ARE AND HOW WE CAN COLLABORATE IN THAT WAY. >> WE WANT TO THANK YOU FOR THIS TIME, DR. GILLMAN. I HOPE THIS IS NOT OUR ONLY OPPORTUNITY TO ENGAGE WITH YOU. WE HOPE TO WRITE UP A FOLLOW-UP REPORT THAT KIND OF SUMMARIZES SOME OF THE INPUT AND I CERTAINLY HEARD FOCUS FROM YOU ON SOLUTINS ORIENTED RESEARCH WHICH IS REALLY AFFIRMING AND THE IDEA OF GETTING RESEARCH INPUT QUICKLY INTO THE POLICY PROCESS OR SOMETHING I THINK A LOT OF OUR MEMBERS NOTED, AS WELL AS THIS NOTION OF THE DIVERSITY ACROSS INDIAN COUNTRY, FOCUS WITH NAVAJO DEEPLY AS A LARGE SITE, SMALL POPULATION, SMALL TRIBES WANTING TO LEARN FROM SOME CROSS-CUTTING THEMES THAT MIGHT COME THROUGH THINKING ABOUT HOW TO INCLUDE THE RANGE OF DIVERSITY ACROSS INDIAN COUNTRY SO THANK YOU SO MUCH FOR YOUR TIME AND COMMITMENT TO THINKING WITH US AND TO ASKING AND ENGAGING WITH US, THAT'S WHAT PARTNERSHIP IS ABOUT. >> THANKS A LOT FOR WELCOMING ME HERE. [APPLAUSE] >> ALL RIGHT. WE'RE JUST A LITTLE BIT BEHIND. BUT WE'RE MOVING INTO THE ELECTION FOR TAC CHAIR AND SO CHAIR POSITIONS, I'VE BEEN ASKED TO CLARIFY. WE'RE STILL IN THE MIDST OF OUR CHARTER DISCUSSION SO I WANT US TO TURN TO THAT PAGE, I THINK I MISUNDERSTOOD A BIT. MEMBERS, DELEGATES AND ALTERNATES CAN BE BOTH TRIBAL LEADERS APPOINTED AND ELECTED BUT ALSO DESIGNATED BY TRIBAL OFFICIALS. ACCORDING TO THE CHARTER, CARE AND CO-CHAIR WILL BE ELECTED OR APPOINTED TRIBAL LEADER. WE'VE GONE BACK AND FORTH A BIT WHAT WE MEAN BY APPOINTED HERE SO I WANTED TO MAKE SURE THAT, YOU KNOW, BEFORE WE DO OUR NOMINATIONS MY UNDERSTANDING, MY READ OF THIS, IS ELECTED OR APPOINTED, WE INCLUDED APPOINTED IN TERMS OF A LOT OF HOW THE SOUTHWEST DOES THEIR APPOINTMENTS DIFFERENTLY FROM ELECTED. BUT I DON'T BELIEVE THAT THIS INCLUDES DESIGNATED TRIBAL OFFICIALS. SO IF YOU'RE APPOINTED TO THIS BODY, THAT'S ONE SORT OF APPOINTMENT BUT I DON'T BELIEVE THAT'S WHAT IT MEANS HERE. ARE THERE -- BUT LET'S HAVE A BRIEF CONVERSATION ABOUT THAT BECAUSE WE CAN ALSO ENTERTAIN A MOTION TO CLARIFY THIS PIECE IF THAT'S A DIFFERENT UNDERSTANDING THAN OTHERS ARE UNDER. DOES THAT MAKE SENSE? OKAY. SO IS THERE ANY DISCUSSION ON THIS LANGUAGE HERE IN TERMS OF OUR MEMBERSHIP AND WHO ARE OUR DELEGATES AND WHO WE KIND OF REPRESENT AND SPEAK FOR? I JUST DON'T WANT US TO MOVE INTO NOMINATIONS BEFORE WE'RE REALLY CLEAR ON WHO IS ELIGIBLE. YES. >> (INDISCERNIBLE) FROM OKLAHOMA. I'M A DESIGNATED -- I WAS DESIGNATED BY THE GOVERNOR. IT'S APPROACH IT SHOULD BE, I READ ALSO IT SHOULD BE TRIBAL APPOINTED OR ELECTED TRIBAL LEADER, NOT A DESIGNEE. >> SO LAST TIME I WAS HERE I WAS A DESIGNATED HEALTH DIRECTOR, AND I MEAN THAT'S WHY WE INCLUDED THAT LANGUAGE BECAUSE I FELT EVEN AS A HEALTH DIRECTOR THAT IT WOULD BE APPROPRIATE TO HAVE LEADERSHIP BE AN ACTUAL TRIBAL LEADER, THAT WAS THE ONLY THING WE WERE TRYING TO EMPHASIZE THERE. AND THAT WAS COMMENT AGAIN FROM A TECHNICAL SIDE, A PROGRAM PERSON. YOU KNOW, I'M TRYING TO EMPHASIZE THAT MOST OF THESE COMMITTEES IT WOULD BE NICE TO HAVE AN ELECTED OFFICIAL SERVE AS LEADERSHIP, AS ONE OF THEM, YEAH. >> FROM THAT SENSE MY SENSE IS THAT WE WILL KEEP THE LANGUAGE AS IT'S STATED AND THAT WE'LL OPEN UP NOMINATIONS FOR -- WHY DON'T WE START WITH CHAIR. WHAT WE HAVE, WE'RE REQUESTED TO HAVE BALLOTS, WE'LL PASS THESE AROUND.% AND WHAT YOU HAVE ACTUALLY WE'LL DO NOMINATIONS FOR CHAIR FIRST AND THEN CO-CHAIR BUT YOUR BALLOTS HAVE SPOTS FOR ONE OF EACH AND WE HAVE THEM NUMBERED, JUST TO MAKE SURE THAT WE'RE ALL GOOD HERE. SO I'LL GO AHEAD AND PASS THESE AROUND FOR THE DELEGATES. SO WE'LL GO AHEAD AND OPEN NOMINATIONS FOR THE CHAIR POSITION. I WAS NOT THE CHAIR SO I CAN'T NECESSARILY SPEAK TO THE RESPONSIBILITIES BUT I CAN GIVE YOU A SENSE THAT FROM TIME TO TIME CHAIRPERSON PAYMENT AND I WERE ASKED TO BE ON PRELIMINARY CALLS TO PREPARE FOR SOME OF THE AGENDA TO MEET, TO CONSULT WITH PRESENTERS WHO MIGHT BE COMING AS WELL AS TO HELP ENCOURAGE PARTICIPATION, IF A POSITION WASN'T FILLED, BUT I THINK THAT ROLE CAN EVOLVE OVER TIME. SO I'LL OPEN NOMINATIONS FOR CHAIR. >> (INAUDIBLE). >> I DID, YES. SO I HAVE A NOMINATION FOR PRESIDENT TILLSBACK, ARE YOU OPEN TO THAT NOMINATION? OKAY. DO I HAVE OTHER NOMINATIONS FOR CHAIR? I'M GOING TO MAKE IT EASY. >> (INAUDIBLE). >> I THINK I MIGHT. OKAY. ALLISON, I'LL PUT YOU DOWN AS A NOMINEE. OKAY. >> I'D LIKE TO NOMINATE (INDISCERNIBLE) FOR CHAIR. >> I APPRECIATE THAT. I'M GOING TO HAVE TO DECLINE BUT THANK YOU, MR. ANTONE. OKAY. ALL RIGHT. SO I THINK ALL THOSE IN FAVOR? ANY OPPOSED? >> (INAUDIBLE) [LAUGHTER] >> CONGRATULATIONS, ALL RIGHT. OKAY. OPEN NOMINAIONS FOR CO-CHAIR, AND I DID RECEIVE ONE NOMINATION FOR CHAIRPERSON (INDISCERNIBLE) ARE YOU OPEN ON THAT NOMINATION? OKAY. CAN I GET A SECOND? >> SECOND. >> OKAY. OTHER NOMINATIONS? ALL THOSE IN FAVOR? ALL THOSE OPPOSED? ABSTENTIONS? MOTION CARRIES. WE DIDN'T NEED OUR BALLOTS. CONGRATULATIONS. CAN I GIVE YOU THE MICROPHONE NOW? [LAUGHTER] >> NO. >> ALL RIGHT. BACK AHEAD OF SCHEDULE HERE. >> THANK YOU FOR THE NOMINATION, ALLISON AND CHIEF. THE -- I MEAN, I THINK CHAIRMAN PAYMENT AND YOUR WORK, MALEA, REALLY STARTING US OFF ON A REAL STRONG NOTE BUILDING A FOUNDATION. I WAS THE FIRST TO NOMINATE YOU BECAUSE I FELT YOUR EXPERTISE WOULD GET US GOING IN THE RIGHT DIRECTION, ALL THE WORK AT NCAI WITH THE RESEARCH POLICY GROUP IS REALLY DRIVING US IN, LIKE I SAID, IN THE RIGHT DIRECTION. THE BENEFITS DEFINITELY MEETING AFTER WORK, THIS WAS ALL PLANNED -- I'M SORRY IF YOU WEREN'T INCLUDED. WE JUST DID THAT THIS MORNING. [LAUGHTER] BUT I THINK -- I APPRECIATE THE CONFIDENCE. LIKE I WAS COMING FROM A VERY TECHNICAL SIDE BEFORE, AND VISITING ON THE BUS WITH SOME OF THE COMMITTEE MEMBERS, IF WE MAKE AN EFFORT TO BE HERE, THIS IS OUR PRIORITY, OUR INTEREST. THERE'S SO MANY OTHER AGENDAS WE COULD BE INVOLVED IN NATIONAL TRIBAL POLICY, AND IF WE'RE CHOOSING TO BE INVOLVED IN NIH THAT MEANS IT'S DEFINITELY SOMETHING CLOSE TO OUR HEARTS, WHICH IS RARE FOR SOMETHING LIKE NIH, ONE OF THE LAST AGENCIES TO DEVELOP A CONSULTATION POLICY WHICH REALLY IS ONE THAT NEEDS ONE THE MOST SO I WANTED TO SHARE THAT WITH THE GROUP HERE THAT -- AND MAKE SURE I DO PLAN MY TRAVEL ACCORDINGLY NOW TO BE FULLY PARTICIPATING, I WILL BE LEAVING AT ONE BECAUSE OF MY FLIGHT AND THAT'S WHY I THINK THE CO-CHAIR WILL DEFINITELY BE ABLE TO STICK IT OUT AND CHAIR THE REST OF THE MEETING SO I WANT TO THANK YOU FOR YOUR TIME AND YOUR COMMITMENT TO THIS GROUP AND I THINK IT'S STILL VERY VALUABLE, WE'RE GOING TO NEED YOUR ASSISTANCE AND GUIDANCE IN HOW WE TAKE THIS LEADERSHIP ROLE ON FOR THE NEXT YEAR AND WORKING WITH DR. WILSON AND HIS FIRST YEAR ALSO. SO THANK YOU GUYS. >> I ALSO WANT TO THANK YOU FOR YOUR LEADERSHIP. YOUR LEADERSHIP HAS BEEN INSPIRING FOR THIS PAST YEAR. YOUR DEDICATION TO INDIAN PEOPLE, YOUR VOICE HAS BEEN REAL LOUD, AND I JUST REALLY APPRECIATE KNOWING YOU. KIND OF IN THE INDIAN WAY, I DIDN'T KNOW WE WERE GOING TO HAVE ELECTIONS, YOU KNOW, SO SOMETHING WE HAVE TO BE MINDFUL OF, YOU KNOW, WE REALLY GIFT PEOPLE, THINGS THEY ARE DONE FROM THEIR HEART, AND I TRULY BELIEVE YOU'VE DONE THIS WORK THROUGH YOUR HEART. YOU'LL CONTINUE TO DO IT. I HAVE SOME EARRINGS FOR YOU THAT -- [APPLAUSE] >> I'M GOING TO JUMP IN, I'LL KEEP IT SHORT, JUST TO SAY WHEN I FIRST GOT ON THIS, THIS WAS MY FIRST BIG DEAL THAT I DID WHEN I GOT ELECTED, AND I DIDN'T REALLY KNOW WHAT I WAS GETTING INTO, BUT I FEEL LIKE I PICKED IT UP VERY QUICKLY BUT MOST IMPORTANTLY I PICKED UP THE IMPORTANCE OF WHAT WE'RE DOING HERE. IT'S SOMETIMES HARD TO EXPLAIN TO MY FOLKS BACK HOME WHY THIS IS IMPORTANT, AND WHY IT'S IMPORTANT TO ME, BUT I BELIEVE THAT THE WORK THAT WE DO NOW LAYS THE GROUND WORK FOR OUR FUTURE, AND FOR OUR CHILDREN, AND FOR OUR COMMUNITIES, AND THAT'S WHY IT'S IMPORTANT, IF WE CAN'T GET TO THE ROOT OF WHAT OUR PROBLEMS ARE, THEN WE CAN'T FIX THEM. AND THIS IS A WAY FOR US TO DO THAT AND DO IT IN COLLABORATION WITH NIH AND SO THAT'S WHY THIS IS IMPORTANT TO ME. SO I'M VERY HONORED, THANK YOU, ALLISON, THANK YOU MR. ANTONE, AND ALL OF YOU FOR ALLOWING ME TO DO THIS AND THANK YOU MALEA. MALEA IS ONE OF THE PEOPLE, SHE DOESN'T KNOW IT AND SHE PROBABLY WOULDN'T BELIEVE IT BUT SHE'S A ROLE MODEL FOR ME AND HAS BEEN FROM THE DAY I MET HER AND I'M GREAT FOR THE WORK SHE'S DONE, CHAIRMAN PAYMENT HAS DONE. THEY HAVE BEEN MENTORS AND I APPRECIATE IT AS HAVE ALL OF YOU. I LOOK FORWARD TO THANK YOU. KNOW YOU HAVE MY COMMITMENT. THANK YOU. >> OKAY. >> (INAUDIBLE) [LAUGHTER] >> I'LL GIVE AARON SOMETHING WHEN I SEE HIM [LAUGHTER] WE'LL MOVE ON WITH OUR AGENDA AND CATCH US UP. WE'RE MOVING TO THE TAC NOW, TRIBAL ADVISORY COMMITTEE, TRIBAL DISCUSSION SO I'LL TURN IT OVER TO DR. WILSON. >> THIS IS A GREAT OPPORTUNITY TO TAG TEAM ON THIS DISCUSSION. I'M LOOKING FORWARD TO COMING INTO THE POSITION I WAS HANDED THE EXCEL SHEET WITH THE 40 PRIORITIES, AND SAID HERE YOU GO. THIS IS A GREAT OPPORTUNITY FOR YOU. I THINK THAT THEY ARE ALL VERY IMPORTANT. I'VE READ THROUGH THEM SEVERAL TIMES AND I THINK THERE ARE SOME OVERLAP BUT SOME OF THEM ARE VERY UNIQUE. I THINK IT'S OUR GOAL AND OUR CHARGE TO REALLY PICK OUT WHAT WE WANT TO IDENTIFY AS SOME SHORT-TERM AND SOME LONG-TERM OBJECTIVES THAT WE CAN REACH TOGETHER TO NOT ONLY INCREASE AWARENESS BUT ACHIEVE THE PRIORITIES THAT ARE RELEVANT TO ALL THE DIFFERENT TRIBES THAT ARE REPRESENTED HERE. SO I'M NOT SURE EXACTLY HOW WE WANT TO BEGIN THE DISCUSSION IN TERMS OF IDENTIFYING SOME OF THESE PRIORITIES BUT WE REALLY NEED TO THINK ABOUT HOW WE CAN PARE THESE DOWN TO ACTIONABLE ITEMS THAT WE CAN REALLY BEGIN TO ADDRESS NOT ONLY AS A COMMITTEE BUT ON MY SIDE AS ON THE AGENCY SIDE WITH OUR OFFICE AND WITH THE DIFFERENT INSTITUTES AND CENTERS WE'RE PARTNERING WITH. >> IS THIS THE ONLY -- WE CAN'T PUT THIS ON THE SCREEN, THE PRIORITY LIST THERE TO LOOK AT? AND THEN I KNOW IN THE PAST THEY DID DO SORT OF ALMOST LIKE A RAIL ITEM SHEET WHERE THEY HAD WHAT WAS COMPLETED AND WHAT WAS IN THE WORKS AND WHAT WAS STILL GOING SO I WONDER IF THERE WAS ANY EFFORT TO DO THAT, THAT WAY, THAT WOULD HELP ELIMINATE SOME OF THIS -- SOME OF THESE PRIORITIES, AT LEAST -- IT WAS BACK DECEMBER 15, 2015. DECEMBER 18, 2015. SO A LOT OF THOSE WE'VE ALREADY TAKEN CARE OF. WE HAVEN'T UPDATED THAT ANY OTHER WAY? >> SO I DON'T THINK THAT WE'VE UPDATED IT IN TERMS OF IDENTIFYING. WE'VE IDENTIFIED MAJOR THEMES AND WE'VE HAD SOME ACCOMPLISHMENTS, BUT THERE'S STILL ALL THESE UP THERE THAT YOU SEE ARE STILL GOALS THAT WE HAVE LISTED THAT WE HAVEN'T BEEN ABLE TO ADDRESS YET. >> THE OKAY. THEN THE QUESTION WOULD BE HOW SHOULD WE PROCEED AND DO WE WANT TO USE THIS AS GUIDANCE TO REESTABLISHING THOSE OR REPRIORITIZING PRIORITIES? BECAUSE I KNOW THE WAY THE AGENDA HAS BEEN DEVELOPED WAS BASED ON THOSE PRIORITIES ALSO, THAT WE BEGIN TO CHECK THOSE OFF AS THINGS WE'VE ADDRESSED AND THINGS WE WANT TO SEE MOVEMENT ON FROM NIH. >> AND ALSO THINK IN MIND IN TERMS THAT THE PRIORITIES THAT ARE STATED BY THE COMMITTEE ARE ALSO GOING TO BE PRIORITIES WITHIN OUR STRATEGIC PLAN, SO THEY HAVE TO BE SOMEWHAT GENERAL AND THEY HAVE TO BE APPLICABLE TO ALL THE TRIBES ACROSS THE COUNTRY. SO FOR AN EXAMPLE, WORKFORCE DEVELOPMENT, I MEAN, THAT'S ONE THAT'S REOCCURRING THAT WE REALLY NEED TO THINK ABOUT THAT HAS A LOT OF DIFFERENT PRONGS AND A LOT OF DIFFERENT WAYS WE CAN ADDRESS THIS. SO THAT I THINK IS ONE PRIORITY THAT IS PROBABLY A NO-BRAINER, BUT WE SHOULD COME UP WITH SEVERAL MORE THAT WE CAN BEGIN TO CREATE THE STRATEGIC PLAN AROUND AND HOW WE CAN DEVELOP IN ADDRESSING THESE. AGAIN, IN SHORT-TERM AND LONG-TERM GOALS. YES, DR. BALL? >> ONE OF THE RECOMMENDATIONS I HAVE IS, YOU KNOW, BECAUSE I REMEMBER THE DISCUSSION WHEN ALL THESE, THIS LAUNDRY LIST WENT OUT, AND THEN WE HAD TO SET PRIORITIES, AND WE REALLY THOUGHT ALL OF THEM WERE REALLY JUST AS IMPORTANT, SO I DON'T THINK WE TOOK ANYTHING DOWN BECAUSE IT WAS EVERYBODY AT THE TABLE THAT THOSE WERE THE NEEDS THAT WERE EXPRESSED. I WONDER IF IT'S POSSIBLE TO THINK ABOUT -- I KNOW YOU'RE NOW FORMING AN INTERNAL COMMITTEE, A TRIBAL COMMITTEE, THAT YOU WOULD BE ABLE TO LOOK AT SOME OF THESE TO SEE IF THEY COULD BE PUT ON YOUR GUIDANCE TABLE TO BE ABLE TO START KIND OF WORKING, THAT WOULD GIVE YOU SOMETHING FROM THE TRIBAL ADVISORY COUNCIL, AND THEN THE OTHER BIG TICKET ITEMS THAT WE THINK TRIBES CAN REALLY PUSH FOR COULD THEN BE DEVELOPED INTO OUR AGENDA. IS THAT SOMETHING THAT -- >> ABSOLUTELY. I APPRECIATE THAT RECOMMENDATION. I THINK THAT'S REALLY IMPORTANT PERSPECTIVE TO HAVE OUR EXPERTS WITHIN THE AGENCIES COMMENT ON WHAT IS ACHIEVABLE WITHIN THE ASKS STATED BEFORE US AND THEN HOW CAN WE MESH THOSE TWO TOGETHER SO I THINK THAT THROUGH THAT CONVERSATION ABSOLUTELY WE CAN GET A BETTER LIST OF PRIORITIES. >> SO I THINK IN TERMS OF THE PRIORITIES TOO ONE OF THE THINGS THAT WE AS THE ADVISORY COMMITTEE NEEDS TO THINK ABOUT THOUGH IS WHAT IS OUR COMMUNICATION STRATEGY BACK OUT TO INDIAN COUNTRY AND HOW WE MAKE SURE THAT AS WE'RE MOVING ALL OF THESE THINGS FORWARD THAT WE'RE ENGAGING, YOU KNOW, 557 FEDERALLY RECOGNIZED TRIBES BECAUSE I THINK IT'S REALLY IMPORTANT THAT IT'S ONE THING TO TALK ABOUT WHAT WE'RE DOING, YOU KNOW, AND HOW WE'RE MOVING THINGS FORWARD BUT IT'S ANOTHER THING TO REALLY KIND OF DISSEMINATE THAT INFORMATION SO I JUST KEEP THAT OUT AS KIND OF AN OPEN TOPIC. >> I'M REALLY INTERESTED IN THAT BECAUSE I FEEL LIKE WHEN I WAS AT NCI THAT WAS A BIG CHALLENGE FOR US BUT WE KNEW THAT WAS PART OF OUR ROLE SO I SEE AS PART OF THAT BUT I WONDER FROM STACKS PERSPECTIVE OR ADVISORY COMMITTEES BECAUSE WE HAVE MEETINGS THAT WE CAN THINK ABOUT AND MECHANISMS AND HOW NOT TO REINVENT, WHICH IS NOT WHAT I'M HEARING YOU SAY AT ALL BUT I'M ALSO WONDERING TOO WITH SOME OF THESE AND I'M LOOKING MOSTLY AT BOLDED FACE ONES LIKE INVEST IN INTERAGENCY COORDINATION ON RESEARCH POLICY AND DEVELOPMENT, SOMETHING I'VE HEARD THROUGHOUT THE LAST TWO DAYS, THAT ONE IS MORE IN MY MIND THE FIRST STEP WILL BE TRYING TO UNDERSTAND WHAT IS ALREADY IN PLACE AT NIH SO I FEEL LIKE IT'S A DIFFERENT KIND OF AN ASK, IF WEIGH WANT TO LOOK AT MORE OF EPA POLICY, INPUT FROM RESEARCH BACK TO EPA OR CDC OR OTHER AGENCIES WE FIRST NEED TO TRY TO UNDERSTAND WHAT'S ALREADY IN PLACE IN GOING ON SO I FEEL LIKE THEY ARE JUST AS IMPORTANT BUT WHAT THE NEXT STEPS ARE IN EACH OF THESE MIGHT LOOK DIFFERENT AND I DON'T LIKE THE TERM "ASK" BUT I THINK IT'S SOMETHING THAT'S USED HERE IN D.C. A LOT, BECAUSE IT FEELS PASSIVE TO ME, BUT I THINK IT COULD BE AN ACTIVE KIND OF PIECE SO TRYING TO DEVELOP POTENTIALLY SOME ASKS UNDER THESE THAT CAN HELP US GET TO NEXT STEPS MAY BE SOMETHING FOR US TO -- AND I LIKED YOUR IDEA ABOUT SUBCOMMITTEES. IT'S HARD BECAUSE EVERYBODY IS ALREADY STRETCHED BUT I'M DEFINITELY WILLING TO DO SOME WORKING GROUPS IF THAT'S SOMETHING YOU FOLKS WANT TO CONSIDER. >> MALEA, YOU DID A RECAP THIS MORNING THAT INCLUDED ALMOST A PRIORITY LIST. MAYBE WE ALSO COULD START WITH THAT. >> YEAH, BUT I WANT TO MAKE SURE THAT THE COMMITTEE DOESN'T TAKE JUST THE EVENTS THAT WE HAD DURING THIS MEETING, WE WANT TO MAKE SURE IT DIDN'T ENCAPSULATE PRIOR ENGAGEMENTS SO IT'S A COMPREHENSIVE ASSESSMENT OF THE COMMUNITIES AND I THINK THAT WHATEVER PRIORITIES ARE IDENTIFIED, THAT THERE WILL BE A GATHERING OF BACKGROUND INFORMATION SO WE CAN UNDERSTAND EXACTLY WHERE WE ARE AS A STARTING POINT SO THERE WILL BE OTHER AGENCIES THAT HAVE ACTIVITIES OR ONGOING ENGAGEMENTS THAT WE CAN LEVERAGE THOSE AND MAKE STEPS FORWARD BECAUSE IF THEY ARE IDENTIFIED AS PRIORITIES THAT MEANS THERE ARE STILL LOTS OF AREAS FOR OPPORTUNITIES THAT NEED TO BE ADDRESSED . >> I SAY THAT ALSO -- THANKS, DOCTOR. THE STUFF WE'RE BRINGING UP THOUGH, TO ME, COMING BACK, STILL THE SAME STUFF. SO WE NEED MOVEMENT ON IT, FOR SURE, AND I DON'T WANT TO -- IN THIS TIME WE SHOULD PROBABLY TRY TO PUT CLOSURE ON A LOT OF THESE ISSUES, EPICENTER FUNDING, EPICENTER ISSUES, THAT ONCE SINCE WE STARTED. SO CHAIRMAN? >> YEAH, I WAS WONDERING IF WE COULD KIND OF ORGANIZE THIS SPREADSHEET IN A WAY THAT'S MORE UNDERSTANDABLE, AND ALSO CAROL'S POINTING OUT WE DON'T HAVE DATES ON WHEN THESE PRIORITIES WERE ESTABLISHED. WE DON'T HAVE A WAY OF LEARNING HOW THEY ARE GOING TO BE TAKEN CARE OF BY MECHANISM, WHO IS GOING TO BE RESPONSIBLE FOR ANY OF THESE, AND ANY ACTIVITIES THAT HAVE HAPPENED IN THAT TIME, THERE'S NO KIND OF UPDATE PORTION OF THE SPREADSHEET, IF THIS IS THE RIGHT FORMAT EVEN. I'M LOOKING AT IT, AND I REMEMBER SOME OF THESE THINGS. [LAUGHTER] BUT I DON'T REMEMBER IF THERE'S ACTION TAKEN, WHEN THEY WERE ADDED, WHO IS GOING TO TAKE THE LEAD IN ALL THESE THINGS. THAT WOULD MAKE MORE SENSE THAN A SPREADSHEET FORMAT. THE THINGS WE TALKED ABOUT TODAY, I WANT TO COMMENT, SOME OF THEM ARE THE SAME BUT SOME OF THEM ARE NEW AND I THINK WE SHOULD -- BUT FOR THE ONES THAT ARE THE SAME WE SHOULD REFLECT THAT IN THE PRIORITIES AND SAY TODAY WE TALKED -- OR YESTERDAY WE TALKED ABOUT THESE THINGS AND THOUGHT OF THESE SOLUTIONS. >> THANK YOU. THIS IS MY FIRST MEETING SO I KIND OF SIT BACK AND TAKE EVERYTHING IN SO I'VE BEEN VERY QUIET BUT I THINK ONE OF THE THINGS THAT I SEE IN TERMS OF THE PRIORITIES IS THAT IT'S BEST TO ESTABLISH AS YOU SAID A TIME LINE BUT ALSO WHAT IS OUR EXPECTATION IN TERMS OF WHEN WE WANT TO GET SOMETHING ACCOMPLISHED, SO THAT, YOU KNOW, WE CAN MEASURE OUR PROGRESS TOWARDS THAT GOAL TO SEE, YOU KNOW, ARE WE MOVING, SITTING STILL, ARE WE ABLE TO GET THAT DONE? SO I AGREE WITH WHAT YOUR COMMENTSES ARE IN TERMS OF SETTING TIME LINES. >> AND THAT HELPS US KNOW HOW EFFECTIVE WE ARE AS AN ADVISORY COMMITTEE TOO SO -- >> I JUST WANTED TO POINT OUT THE DATES, RECOMMENDATIONS WERE PROVIDED, ARE AT THE TOP OF THE -- EACH OF THE DARKENED HEADINGS, THE FIRST WERE SEPTEMBER 18 IN A LETTER TO DR. TABAK, AND THEN IF YOU FLIP OVER TO THE NEXT PAGE, BOTTOM OF PAGE 3, MARCH 18 LETTER TO DR. COLLINS, MARCH 17 OF 2016, SO THIS IS JUST MORE OR LESS A RUNNING LIST OF THE RECOMMENDATIONS THAT WERE PROVIDED. I DON'T THINK THERE WAS ANY FURTHER DISCUSSION ABOUT THE NECESSARY STEPS TO ACCOMPLISH THESE GOALS. THEY WERE JUST LISTED AS PRIORITIES. I'M LOOKING FORWARD TO GETTING -- (INAUDIBLE) -- MOVE ON STARTING MONDAY. >> I'M LOOKING AT THE LETTER THAT WE SENT OUT AND IT SAID ALL OF THE THINGS THAT WE WERE EXPECTING AT THE NEXT MEETING, AND NIH HAS BEEN REALLY RESPONSIVE LIKE THE ECHO INFORMATION THAT, ALL OF US INFORMATION, ALL THE THINGS WE WERE TALKING ABOUT WE'VE BEEN RESPONSIVE BUT THAT'S NOT REFLECTED IN HERE EITHER. WE GOT THE INFORMATION WE ACTUALLY REQUESTED SO I THINK THAT'S A GREAT THING BUT IT SHOULD BE REFLECTED SOMEWHERE. >> SOUND LIKE MARCHING ORDERS THOUGH. I THINK EXPECTATION WISE WE'RE GOING TO NEED FROM YOU, DR. WILSON, TO REALLY FORMALIZE THIS INTO SOME SORT OF TIME LINE SPREADSHEET MATRIX. WE HAD ONE BEFORE, I REMEMBER, WE HAD A LIST OF THINGS WE WERE DOING WHEN WE WERE CREATING YOUR POSITION. I REMEMBER THAT WAS ONE OF THE THINGS THAT WAS ACHIEVED AND SO WE WERE MOVING TO THE NEXT ITEM, WE CAN GET THAT BACK, GET THAT KIND OF ORGANIZATION ON OUR PRIORITIES BACK SO WE REALLY AGAIN HAVE TO BEGIN TO EMPHASIZE WHEN WE HAVE OUR ONE ON ONE, AND THEN, AGAIN, NOT TO BE REDUNDANT BUT ALSO TO BRING ON THE NEW ISSUES. >> I THINK MAYBE ONE OF THE WAYS THAT WE CAN ALSO FIND A PATHWAY FORWARD IS, YOU KNOW, THOSE OF US THAT ARE INVOLVED WITH OUR TRIBAL COUNCILS AND FEDERAL FUNDING ISSUES, YOU KNOW, AND THE UNCERTAINTY THAT SEEMS TO BE SORT OF LIKE A CLOUD HANGING OVER, NOT KNOWING WHAT'S GOING TO HAPPEN WITH FEDERAL FUNDING, I'M THINKING THAT -- I THINK UNDERSTANDING WHAT NIH'S -- WHERE DO WE, YOU KNOW, LET OUR VOICES BE HEARD IN THE NIH BUDGETING PROCESS, SO THAT WE CAN ADVOCATE FOR FUNDING FOR THESE RESEARCH PROGRAMS THAT ARE EXTREMELY SIGNIFICANT IN OUR COMMUNITIES, AND WHEN DO WE GO TO THE HILL AND SAY THESE ARE OUR NEEDS, THESE ARE OUR INTERESTS, PLEASE KEEP THESE FUNDINGS INTACT OR HAVE THESE FUNDINGS INCREASED. I THINK THAT THAT'S OUR OTHER PURPOSE, YOU KNOW. I THINK THAT'S SOMETHING THAT I LIKE TO SEE JASE AND LEE ANNA SITTING BEFORE BUDGET HEARINGS AND ADVOCATE FOR BUDGET PRIORITIES FOR WHAT OUR NEEDS ARE SO PART OF CREATING A PRIORITY WE SHOULD ALSO NOT LEAVE THAT OUT AS WELL. >> OKAY. AND I THINK WITH ALL OF OUR EXPECTATIONS AS LEADERSHIP IN OUR COMMUNITIES WE WANT THINGS DONE. WE ACTUALLY DON'T WANT TO DO THE WORK. WE WANT IT DONE. AND I THINK THAT RIGHT NOW IT'S ALMOST FEELING LIKE I WANT TO GET UP THERE AND START CREATING A TIMELINE FOR YOU GUYS, YOU KNOW. IT'S LIKE IT'S RIGHT -- THAT'S WHY WE GOT TECHNICAL PEOPLE, NIH. I JOKED LAST TIME, EVEN YOUR SECRETARIES HAVE Ph.D.s. SO I MEAN IT SHOULDN'T BE HARD FOR NIH TO FORMALIZE THIS INTO A SPREADSHEET THAT SHOWS THE PROGRESS WE'VE MADE ON THESE PRIORITIES AND WHAT OUR NEW PRIORITIES MAY BE, SO IF YOU GUYS COULD DO THAT OR IF THAT'S THE MARCHING ORDER YOU NEED THEN I THINK YOU HAVE IT, BECAUSE THE OTHER PIECE THAT CHIEF COOK MENTIONED IS NOT ONLY WITH THESE PRIORITIES WE SHOULD TRY TO IDENTIFY WHICH INSTITUTE WOULD BE INVOLVED THAT WOULD HAVE SOME RESPONSIBILITY IN TRYING TO ACHIEVE OR ADDRESS THESE PRIORITIES. YES, CHAIRWOMAN? >> I WAS GOING TO SAY WHAT I HEARD YOU SAY EARLIER, THERE ARE THEMES, SIMILAR THEMES WOVEN THROUGHOUT THAT. I'M BIG ABOUT CATEGORIZING. IF YOU COULD TAKE THESE AND PUT THEM INTO THEMES, THIS IS BASED HERE AND THIS IS BASED HERE AND THIS IS A FUNDING ISSUE AND THIS IS THIS, I THINK IF YOU CAN CATEGORIZE THAT, THEN THAT BECOMES EASIER TO FIND OUT AND TO ASSIGN, WHAT CAN NIH DO, WHAT DOES THE COMMITTEE NEED TO DO, WHAT DO WE AS TRIBAL LEADERS NEED TO DO, BUT I THINK IF YOU CAN CATEGORIZE THESE THOSE THINGS INTO SIMILAR THEMES THEN WE CAN TAKE A LOOK AND I'M ABOUT HOW DO YOU EAT A BEAR, ONE BITE AT A TIME, SO IF WE CAN GET CATEGORIES, FIGURE OUT WHICH PIECE TO TACKLE FIRST AND NEXT OR MAYBE TACTICAL TACKLE TWO OR THREE WITH SUBCOMMITTEES BUT UNTIL WE KNOW CATEGORIES AND WHO CAN DO WHAT IT'S HARD TO MOVE FORWARD. THAT'S KIND OF MY THOUGHTS AND SUGGESTIONS AS YOU MOVE THROUGH ON THAT. >> YEAH, THANK YOU FOR THAT COMMENT. WHAT YOU'RE DESCRIBING IS THE STRATEGIC PLAN, THOSE BUCKETS ARE ABSOLUTELY WHAT WERE IN DEVELOPMENT AND SO AS THIS OFFICE HAS BEEN NEWLY CREATED WE'RE ABSOLUTELY LOOKING TO CREATE THAT AS A PRIORITY, COMING INTO THE POSITION WITH DEVELOPING THOSE BIG BUCKETS SO THAT WE CAN PUT ALL OF THESE IN ONE OF THOSE OR THE OTHER. ALSO THE COORDINATING COMMITTEE WILL BE THAT RESOURCE FOR YOU TO IDENTIFY WHICH ICs ARE GOING TO BE THE LEAD EXPERTS IN ANSWERING QUESTIONS OR HELPING US SOLVE PRIORITIES ON THE LIST. >> SO, YOU KNOW, I AGREE WITH ALL THAT'S BEEN SAID. THE OTHER THING I THINK THAT WOULD BE REALLY HELPFUL TO FLESH THIS OUT IS WHAT ARE OUR DESIRED OUTCOMES WE'VE BECAUSE GOT A LAUNDRY LIST EARLY ON, WE WERE ALL NEW TO THE COMMITTEE AND THE GROUP BUT I THINK MAYBE THAT'S -- MAYBE THAT'S REALLY FOCUSING ON THIS DURING OUR MONTHLY CONFERENCE CALLS IS A GOOD WAY TO USE OUR TIME ON THOSE CALLS AND THINK ABOUT THAT SO IF YOU COULD KIND OF GIVE US YOUR FIRST PASS BEFORE OUR NEXT CALL THAT MIGHT BE A REALLY GREAT WAY TO USE OUR TIME TOGETHER. >> I JUST ECHO THAT BECAUSE I THINK THERE ARE A LOT OF DIFFERENT THINGS WE CAN DO, THINKING ABOUT WHERE OUR BEST VALUE AT A COMMITTEE IS KEY, LOOKING AT THOSE OUTCOMES WHERE WE WANT TO USE OUR TIME BEST AND SO AS A SUGGESTION IF WE DO COME UP WITH SOME CATEGORIES AND THERE WAS AN EFFORT TO TRY TO CATEGORIZE WHICH IS THE BOLDED KIND OF CELLS THOSE MAY NOT FIT ANYMORE, BUT I WOULD JUST SAY THAT I'LL COME TO THE NEXT MEETING, SAYING WHAT I THINK MY TOP PRIORITY IS, IT WOULD BE HELPFUL IF MAYBE FOLKS COULD COME AS OPPOSED TO RANKING, COME AND SEE IF WE HAVE SOME OVERLAP AND MAYBE THEN THAT WILL INFORM SOME OF THE WORKING TEAMS WE COULD DEVELOP OR GETTING SOME ASKS, THAT'S HARD BECAUSE WE HAVE OUR OWN INDIVIDUAL EXPERIENCE AND RECOGNIZING WHERE WE SIT AT REPRESENTATIVES, SO HOW TO BALANCE, BACK TO THE DISSEMINATION QUESTION GETTING INPUT FROM INDIAN COUNTRY ON THESE. >> THAT SOUNDS LIKE WE HAVE OUR OWN MARCHING ORDERS TOO THEN. LET'S KEEP THAT THEME GOING. I THINK PART OF THIS, ONE OF THE THINGS THAT'S BEEN EXTREMELY EFFECTIVE IN MY MANAGING DIFFERENT COMMITTEE THAT'S VERY SIMILAR TO THIS IS HAVING ONE-ON-ONE CONVERSATION WAS EACH OF THE MEMBERS, BECAUSE THAT GIVES ME A SENSE OF YOUR SPECIFIC PRIORITIES AND TALK ABOUT WHAT YOU WOULD LIKE TO SEE AND ENVISION WITH THIS COMMITTEE MOVING FORWARD BECAUSE IT'S SOMETIMES NOT EASY TO SPEAK IN A GROUP SETTING AND I APPRECIATE THAT, I UNDERSTAND THAT, SO IF WE CAN, I WOULD LOVE TO SET UP INDIVIDUAL CALLS. THEY DON'T HAVE TO BE LONG, 30 MINUTES IS SUFFICIENT, BUT JUST TO GET A SENSE OF YOUR PRIORITIES IN YOUR SPECIFIC COMMUNITIES THAT I NEED TO BE THINKING ABOUT AS WE MOVE FORWARD WITH DIFFERENT ASKS COMING IN NOW AND PHENOMENAL RATE. >> IT SOUNDS LIKE THE HOMEWORK WE'RE ALL DOING, TRIBAL AND NIH, EITHER GOING TO BE BETTER COORDINATED, SOME CONFERENCE CALLS, AND THEN OUR NEXT MEETING, THIS IS DEFINITELY AN AGENDA ITEM, AND THAT WOULD HELP AGAIN WITH THIS AGENDA MOVING US FORWARD. SO MY QUESTION TO THE COMMITTEE WOULD BE THEN I KNOW WE HAVE THE TRIBAL CAUCUS AND BREAK AND TRIBAL CAUCUS AND THEN THE LUNCH, THE DISCUSSION ON THE TRIBAL CAUCUS IS WHAT WE WANT TO BRING UP WITH LAWRENCE REALLY? OKAY, SO IF WE HAVE SORT OF A CONSENSUS ON WHERE WE'RE GOING WITH TRIBAL PRIORITIES WE CAN MOVE TO THE NEXT ITEMS. IS THAT CONSENSUS? >> BEFORE WE MOVE ON, I WANT TO SAY EVEN THOSE THIS IS A LAUNDRY LIST THERE'S SOME THINGS NOT NECESSARILY HAVE TO BUILD STRATEGIES AROUND, IT'S ACTUALLY BUILT INTO THE AGENDA WHICH WE HAVE TO THANK AARON AND MALEA BEFORE, HOW NIH WORKS, THAT'S AN AGENDA ITEM, WE MOVE THAT OVER AND REMEMBER WHEN THE AGENDA IS BEING SCHEDULED OUT THAT, YOU KNOW, WE INVITE SOME OF THE CENTERS IN TO DO -- TO PRESENT ON THEIR WORK. WHEN YOU LOOK AT THIS LIST, IT'S DAUNTING BUT ACTUALLY SOME THINGS HAVE ALREADY BEEN INCORPORATED INTO JUST OTHER AREAS, SO WE CAN JUST KIND OF MOVE THAT OFF THIS, BUT ALSO REMEMBER THOUGH WHEN WE'RE CREATING THE AGENDA THAT'S ACTUALLY SOMETHING. SO SOME OF THESE THINGS, IT LOOKS DAUNTING BUT WHEN YOU START GOING THROUGH IT YOU CAN ACTUALLY JUST KICK SOME OUT. >> COULD I -- WHEN THOSE THINGS ARE IDENTIFIED THAT ARE EITHER ONGOING OR HAVE BEEN ACCOMPLISHED, THAT THEY NOT BE -- THAT A CATEGORY BE, SO THAT WE CAN SEE WE DID SOMETHING? [LAUGHTER] >> SO I THINK ONE OF THE THINGS, AND ADDING MORE TO MY PLATE HERE, ONE THING THAT MIGHT BE EXTREMELY USEFUL IS ANNUAL REPORT OF ACCOMPLISHMENTS AND OUR ACTIVITIES AND I THINK THAT WOULD HELP US TRACK MORE WHERE WE STARTED, WHAT WE'VE DONE AND MAYBE WHERE ARE THE OPPORTUNITIES WHERE WE NEED TO GO FOR 2018. AND JUST REMEMBER IT'S ONLY ME IN THE OFFICE RIGHT NOW. >> ACTUALLY WHY I WANTED TO SAY THAT I THINK THAT AS A CO-CHAIR I CAN'T SPEAK FOR CHAIRPERSON PAYMENT BUT WE WOULD LIKE TO WRITE UP SOME REFLECTIONS FROM THIS LAST YEAR AS PART OF THE COMMITTEE'S CHAIR AND CO-CHAIR REPORT AND PUTTING THAT ON YOU NEXT, NOT SO MUCH A RESPONSE BUT TAKING THE LEAD WHAT WE PRIORITIZED. THE OTHER THING WE WANTED TO GET DONE IN THIS TIME PERIOD WAS FINALIZE THE CHARTER, I WANTED TO PUT BACK ON IF WE CAN THINK ABOUT IF WE HAD TIME FOR THAT. FOUR OTHER ITEMS. >> ARE WE AHEAD NOW? MAYBE WE JUMP INTO THAT AS SOON AS WE'RE DONE DISCUSSION OF PRIORITIES BECAUSE WE'RE GOING TO GET TECHNICAL ADVISORS NEXT MEETING, THEY WILL DO ALL OUR WORK FOR US. [LAUGHTER] THAT'S THE PLAN. BUT I THINK YOU'RE RIGHT. THE OTHER, NOT JUST THE REPORT, BUT SUSTAINABILITY OF ALL THESE PRIORITIES THROUGHOUT NIH, WHETHER WE'RE HERE OR NOT, ELECTED OFFICIALS, SOME OF US HAVE MORE TURNOVER THAN OTHER REGIONS, WE WANT TO MAKE SURE THE WORK WE HAVE SUSTAINS AND WE DON'T HAVE TO REDO PRIORITY LIST, THE SAME PRIORITIES FIVE YEARS LATER. OKAY. SO THAT'S THE OTHER EMPHASIS WE WANT TO HAVE. WHAT ARE WE IN AGREANCE TO MOVING FORWARD WITH, FINISHING THE CHARTER AS WE'RE HEAD? LET'S DIVE INTO THAT. DID YOU WANT TO TAKE A BREAK? I GOT TO TAKE A BREAK. I'M GOING TO TURN IT OVER TO THE CHAIRWOMAN. [LAUGHTER] >> LET'S TAKE A BREAK. >> IN THAT CASE WE'RE GOING TO TAKE A BREAK. ANNOUNCEMENT BY DR. WILSON, ON THE SCREEN YOU SEE THE PRIORITIES AND PROGRESS THEY DID HAVE. THEY DID HAVE THIS INFORMATION FOR US. I KNEW THEY DID. WE SAW THIS ONE LAST MEETING, SO YOU WERE ON A NEED TO KNOW BASIS, BUT NOW YOU NEED TO KNOW I GUESS. >> SO EVERYBODY WILL BE GETTING THIS INFORMATION IN SHORT ORDER, AND GIVE US A REFERENCE POINT SO YOU KNOW WHAT WE'RE GOING TO BE LISTING IN THE TIME LINE. ALL RIGHT. THERE'S A LOT MORE ACCOMPLISHMENTS THAN JUST THOSE THREE, A LOT OF WORK HAS BEEN DONE PREVIOUS TO MY COMING INTO THE POSITION. >> FOR YOUR LEADERSHIP ON THE CHARTER. >> I WAS GOING TO ENCOURAGE TO MAKE A MOTION TO APPROVE THE CHARTER. >> DO WE HAVE A SECOND? WE HAVE A MOTION AND SECOND. ANY FURTHER DISCUSSION? I'LL ASK FOR VOTE BY SHOW OF HANDS FOR, THOSE AGAINST, ABSTENTIONS? MOTION CARRIES. GOOD WORK, GUYS. YOU CAN ADD THAT. WOW, I THOUGHT WE WERE GOING TO TAKE THE WHOLE TIME, BUT THANK YOU. WE DID ALL THE WORK YESTERDAY. WE HAVE A COMMENT FROM ALLISON. >> I WANT TO GO BACK NOW THAT WE HAVE THE CHARTER, AGAIN, SOMETHING THAT COMES UP IN OUR DISCUSSION, IT WAS LIKE WHEN WE LOOK AT THE COMMITTEE ACTIVITIES IN THE LAST BULLET GOING BACK, WHO IS IT WE GO BACK TO REPORT TO, I THINK WE SHOULD HAVE THAT DISCUSSION AT ONE POINT OR ANOTHER BECAUSE I THINK THAT'S COME UP SEVERAL TIMES AND WHO DO WE REPRESENT AND WHOSE VOICES DO WE GET WHEN WE COME BACK TO THE TABLE. >> ALL RIGHT. LET'S MAKE SURE THAT'S A NOTE THAT WE FOLLOW UP ON. JOSHUA? >> I PUT SOME THOUGHT INTO THIS. AGAIN, I'M NEW, JOSH FROM CALIFORNIA. ONE OF THE WAYS THAT I'M THINKING OF DISTRIBUTING INFORMATION FROM THIS COMMITTEE IS WE HAVE TRIBAL CHAIRMAN'S ASSOCIATIONS IN CALIFORNIA, AND I'VE BEEN STARTING THERE AND WE HAVE A NORTHERN CALIFORNIA TRIBAL CHAIRMAN'S ASSOCIATION AND I ACTUALLY WENT TO ONE OF THEIR MEETINGS BEFORE I CAME HERE, AND TOLD THEM THAT, HEY, I'M ON THIS COMMITTEE NOW, WHAT ARE YOUR HEALTH PRIORITIES IN TERMS OF RESEARCH, AND GOT SOME GREAT FEEDBACK FROM THEM AND HISTORICAL TRAUMA WAS ONE OF THE MAIN THEMES THAT CAME OUT OF THAT MEETING. AND SO IT'S GREAT TO HAVE THAT FEEDBACK LOOP WHERE I'M GETTING INFORMATION FROM OUR TRIBAL LEADERS IN CALIFORNIA, BRINGING THOSE PRIORITIES HERE AND THEN ALSO COMPLETING THAT LOOP BACK TO THOSE FOLKS SO THEY CAN DISSEMINATE THAT INFORMATION OUT TO ORGANIZATIONS, TRIBAL MEMBERSHIP AND THEIR COUNCILS AND LEADERSHIP. >> YES, IT DOES GO FULL CIRCLE, THE WORK WE DO, BUT PEOPLE WHO SEND US HERE TOO, WE HAVE TO KEEP THAT RELATIONSHIP. ALLISON? >> THE OTHER THING WHEN WE KIND OF GO BACK TO LOOKING AT OUR PRIORITIES, I WANT TO KIND OF SHARE WITH DR. WILSON THAT MANY REAL GOOD PARTNERS, INDIVIDUALS THAT HAVE WORKED WITH NATIVE COMMUNITIES, YOU KNOW, SOME OF THEM ARE IN THE ROOM, YOU KNOW, AND I DON'T KNOW ALL OF THEM BUT I KNOW THAT JUDY ROHRER WORKED WITH NIAAA, SHELBA, KATHY, I DON'T KNOW WHO IS ON THE COORDINATING COMMITTEE BUT THEY HAVE DONE A LOT OF PRELIMINARY WORK THAT PAVED THE WAY FOR US TO BE HERE, TO BE SITTING AT THIS TABLE, SO IT MAY BE SOMETHING WHEN YOU GUYS LOOK AT WHO IS GOING TO BE ON THE COORDINATING COMMITTEES ACTUALLY THEY HAVE SO MUCH KNOWLEDGE THAT, YOU KNOW, IT WOULD BE A SHAME TO NOT CONSIDER THEM. >> THANK YOU FOR THAT. I ABSOLUTELY LEAN ON THEIR EXPERTISE COMING INTO THIS POSITION AND WE'VE WORKED IN VARIOUS OTHER CAPACITIES AND I CONTINUE TO HOPE WE'RE GOING TO CONTINUE TO DO THAT MOVING FORWARD. YES? >> I WANTED TO ADD. WHAT MANY OF US DON'T KNOW, WHAT IS ACTUALLY PRAGMATIC AND DOABLE WITHIN NIH, AND SO, YOU KNOW, PROGRAM OFFICERS AND FOLKS WHO HAVE BEEN AROUND AND WORKED WITH TRIBES WHO MADE CHANGES TO THOSE PROCESSES, THEIR FEEDBACK REALLY IS IMPORTANT. WE HAVE SHEILA CALDWELL, JUDY ARROYO HERE, MANY FOLKS IN THE ROOM HAVE THAT KNOWLEDGE HOW TO TAKE WHAT TRIBES ARE REQUESTING AND HOW TO KIND OF TRANSLATE THAT INTO SOMETHING THAT WOULD ACTUALLY WORK. >> YES, MALEA. >> ONE OTHER THING THAT COMES UP TO ME IN THE PRIORITIES DISCUSSION IS ALSO -- I HATE TO USE THE TERM, BUT THE TARGET OF OUR WORK. AGAIN, IT'S NOT THE RIGHT AUDIENCE. WE'VE TALKED A LOT ABOUT MORE INTERNAL WORK HERE AND SO FOLKS LIKE THAT I THINK CAN REALLY HELP US NAVIGATE THE INTERNAL WORKINGS ADVISING AROUND CONSULTATION FOR INSTANCE AND WHAT THAT LOOKS LIKE BUT SO OBVIOUSLY WE'RE TALKING WITH SCHOLARS LATER TODAY THINKING ABOUT WORKFORCE AND TRAINING AND WHAT OUR ROLE IS IN ADVISING AND LINKING IN WHEN YOU TALK ABOUT REGIONAL ASSOCIATIONS OF TRIBAL CHAIRMAN I'M ALSO THINKING WHAT ARE WORKFORCE NEEDS AND SHARING BACK TO TRIBAL NATIONS ABOUT OPPORTUNITIES HERE AT NIH AND EXTERNALLY YOU TALKED ABOUT POLICYMAKERS, RIGHT? AND TESTIFYING AT CONGRESSIONAL OPERATIONS HEARINGS. I THINK THERE'S SO MANY DIFFERENT AUDIENCES FOR THE GUIDANCE THAT WE'RE TALKING ABOUT AND AS PART OF THAT, YOU KNOW, BRING YOUR NUMBER ONE PRIORITY CONVERSATION, I THINK IT WOULD BE HELPFUL TO THINK ABOUT IF THERE'S ONE PARTICULAR AUDIENCE FROM YOUR VANTAGE POINT YOU WANT TO BE THINKING THROUGH, THAT'S SOMETHING THAT WOULD BE HELPFUL FOR ME AT LEAST, JUST TO PUT THAT OUT THERE. >> BACK TO THE COMPOSITION OF THIS COMMITTEE, WE ALL HAVE DIFFERENT EXPERTISE AND ALL HAVE IMPORTANT ROLES WE PLAY, ONE MIGHT BE BUDGET PERSPECTIVE, ONE MIGHT BE A RESEARCH PERSPECTIVE. ONE MIGHT BE DEALING WITH WORKFORCE EQUITY KIND OF ISSUES. SO I AGREE. AND I THINK THAT THAT'S THE VALUE WE CAN FIND IN OUR OWN TRIBAL GOVERNMENT-TO-GOVERNMENT RELATIONSHIP AT THIS TABLE. SO DEFINITELY TAKE ADVANTAGE OF THAT. ALL RIGHT. THE CHARTER'S DONE. SO WE'LL TAKE ANOTHER BREAK. NO. I GUESS WE CAN TRANSITION TO OUR TRIBAL CAUCUS AND EVERYBODY ELSE I THOUGHT WE'D DO ANOTHER ROUND OF QUICK INTRODUCTIONS. WE'LL GO AHEAD AND START WITH MARSHA AND GO AROUND AND INTRODUCE EVERYBODY AND WE'LL FINISH OVER HERE. >> GOOD AFTERNOON AND THANK YOU SO MUCH FOR GIVING US THIS FORUM TO SPEAK TO. MY NAME IS MARSHA O'LEARY. TODAY I'M HAROLD FRAZIER, CHAIRMAN OF THE CHEYENNE RIVER TRIBE, I'M HERE AS HIS PROXY. THANK YOU FOR HAVING US HERE. >> I'M WALTER PHELPS, GOOD TO SEE YOU AGAIN, MR. TABAK. >> AGAIN, THANK YOU FOR OFFERING US THIS FORUM. I'M A DELEGATE, MEMO MEMBER AT LARGE. THANK YOU. >> MY NAME IS JOSH, TRIBAL COUNCILMEMBER FROM NORTHERN CALIFORNIA, REPRESENTING THE STATE OF CALIFORNIA REGION. >> DENIES DILLARD, ALASKA AREA DELEGATE. >> I'M HERE REPRESENTING THE OKLAHOMA AREA. >> GOOD AFTERNOON. DEBBIE DANFORTH, ONEIDA NATION, WISCONSIN. MEMBER AT LARGE. >> JEROMY SULLIVAN, REPRESENTING THE PORTLAND AREA. >> GREETINGS, CHIEF MALERBA FROM THE MOHICAN TRIBE, 77 DIFFERENT TRIBES PARTICIPATING IN TRIBAL SELF-GOVERNANCE. >> GOOD TO SEE YOU AGAIN, DR. TABAK. MALIA, ALASKA TRIBAL COUNCIL, AT LARGE MEMBER FOR THIS BODY. >> GOOD AFTERNOON, DR. TABAK. MY NAME IS LEANNA, CHAIRMAN WOMAN OF THE POTAWATOMI AT LARGE MEMBER ON THIS COMMITTEE. ALSO RECENTLY ELECTED AS CO-CHAIR OF THIS COMMITTEE THIS MORNING, SO THAT IS WHY I'M DOING ALL OF THIS. ALSO REGIONAL VICE PRESIDENT FOR SOUTHERN PLAINS REGION OR THE NATIONAL CONGRESS OF AMERICAN INDIANS. >> TO MAKE SURE EVERYBODY GETS A MOMENT, THEN WE'LL GET TO THE DISCUSSION. >> I'M DR. TISHA SOLOMON, MEMBER OF THE CHOCTAW NATION. >> TECHNICAL ADVISER TO DR. ELLISON. >> JEFF, MARNAGEMENT INTERN -- >> DOROTHY CASSTILLO, PROGRAM OFFICER, NIHD. >> CENTER OF BIOETHICS AND NHGRI NHGRI. >> JUDY, NIAAA. >> DAVE WILSON. >> NATIONAL CANCER INSTITUTE. >> SHEILA CALDWELL, NIGMS. >> RASHAD ALEXANDER, NIGMS. >> DR. DONNA GALBREATH, ALTERNATE FOR THE ALASKA AREA. >> RENE ROBINSON, RESEARCHER, SOUTH CENTRAL FOUNDATION, TECHNICAL ADVISER FOR DR. DILLARD. >> GOOD AFTERNOON. JESSICA, NIMHD. >> CAROL SWARTZ, CSR. >> RHIANNE, NATIONAL INDIAN HEALTH BOARD, SERVING AS TECHNICAL ADVISER TO DEBORAH DAN FORTH. >> CATHY FROM NIDA. >> CAROL DIXON, HEALTH SERVICES DIRECTOR. >> HI, TEAR TARA, MEDIA DIRECTOR. >> LAURA BARTLETT, NLM. >> MICHAEL PEERCEY, REP FOR OKLAHOMA AREA. TECHNICAL ADVISER TO CHIEF COOK. >> RITA, NINDS. >> DAVID FOLEY, EPIDEMIOLOGIST WITH THE NAVAJO EPIDEMIOLOGY CENTER, TECHNICAL ADVISER TO MR. WALTER PHELPS. >> THANK YOU, EVERYONE. I'LL TURN IT OVER TO YOU, DR. TABAK. >> WELL, THANK YOU, AND THANK YOU ALL FOR THE INTRODUCTIONS. SO USUALLY WHEN I COME TO MEETINGS LIKE THIS, I HAVE POWERPOINTS BECAUSE I'M AT THE POINT IN MY LIFE WHERE I DON'T EVEN SPEAK TO MY WIFE WITHOUT POWERPOINTS. [LAUGHTER] BUT I HAVE RESISTED THAT TEMPTATION BECAUSE, FRANKLY, WE DO NOT OFTEN GET AN OPPORTUNITY TO LISTEN AND HAVE A CONVERSATION, AND I THINK THE TIME IS BETTER SPENT DOING THAT. I JUST WANT TO REFLECT JUST FOR A QUICK MOMENT ABOUT WHAT YOU HEARD THAT I CAUGHT THE LAST FIVE OR SIX MINUTES OF WITH THE TWO YOUNG PEOPLE HERE. THIS IS ONE OF THE THINGS THAT NIH DOES REALLY, REALLY WELL. WE ARE A FANTASTIC PLACE FOR YOUNG PEOPLE TO EXPLORE ABOUT THEMSELVES. IT'S NOT THAT EVERY YOUNG PERSON WHO COMES HERE BECOMES A PHYSICIAN OR A PH.D., BUT IT DOES ALLOW A YOUNG PERSON TO OPEN UP THEIR HORIZONS AS TO WHAT MIGHT BE POSSIBLE. AND I'M SURE ALL OF YOU APPRECIATE THE POWER OF EDUCATION AND THE POWER OF UNDERSTANDING WHAT MIGHT BE POSSIBLE. HAVING LIVED THAT LIFE OF LEARNING WHAT WAS POSSIBLE BECAUSE I WAS FORTUNATE ENOUGH TO GROW UP IN NEW YORK CITY WHEN A TIME WHEN COLLEGE WAS FREE, SO I'M DATING MYSELF FOR SOME OF YOU, YOU KNOW, THAT'S WHAT CHANGED MY LIFE AND MY FAMILY'S LIFE AND SO ON AND SO FORTH. OF COURSE THE EXPERIENCES AREN'T EQUIVALENT, BUT NONETHELESS, THIS IS THE THING THAT NIH DOES REALLY, REALLY WELL, AND YOU KNOW, I'M PRIVILEGED TO REPRESENT NIH AT THE STAC MEETINGS, AND UNDERSTANDABLY, THE CONVERSATIONS THERE ARE DOMINATED BY SERVICE DELIVERY. AND OF COURSE WE ALL UNDERSTAND WHY THAT HAS TO BE. BUT ABOUT 2% OF THE DISCUSSION, YOU KNOW, IS ABOUT RESEARCH AND RESEARCH TRAINING, AND THE REASON THAT IT'S IMPORTANT TO BE THERE, EVEN IF IT'S ONLY 2% OF THE DISCUSSION, IS TO ENGAGE AT THE BROADEST POSSIBLE LEVEL LEADERSHIP FROM YOUR NATIONS, FROM YOUR COMMUNITIES, TO ENCOURAGE, TO FACILITATE, TO CATALYZE THE OPPORTUNITIES FOR YOUNG PEOPLE. NOW UNDERSTAND, THIS IS NOT AN ALTRUISTIC THING. WE BENEFIT JUST AS MUCH, THAT'S THE PIECE THAT GETS LOST IN THE EQUATION. IT HELPS US ENORMOUSLY TO HAVE YOUNG PEOPLE WHO COME HERE WITH A TOTALLY DIFFERENT PERSPECTIVE. EVERY RESEARCH EVER CONDUCTED ABOUT TEAM SCIENCE UNDERSCORES THAT WHEN YOU HAVE THE MOST DIVERSE TEAM POSSIBLE, THAT'S THE TEAM THAT GETS THE JOB DONE. SO DON'T LET ANYBODY FOOL YOU, THIS IS GREAT FOR US! OKAY? NOW, WE ALSO THINK IT'S GREAT FOR THE YOUNG PERSON. BUT IT'S EQUAL. IT'S AN ABSOLUTELY SHARED OPPORTUNITY, IT'S AN ABSOLUTELY SHARED BENEFIT. AND I'LL MAKE THE SAME OFFER I MAKE EVERY TIME I SPEAK BEFORE A GROUP LIKE THIS, IF THERE IS ANYTHING WE CAN DO TO FACILITATE BRINGING A YOUNG PERSON HERE OR LINKING A YOUNG PERSON CLOSER TO HOME WITH AN OPPORTUNITY SUCH AS THE ONES YOU HEARD HERE TODAY, DON'T BE BASHFUL, JUST PLEASE, LET US KNOW. BECAUSE THAT'S WHY WE'RE HERE, YOU KNOW? NOW I UNDERSTAND YOU WENT THROUGH THE CLINICAL CENTER TODAY? >> YES. >> EXCUSE ME, YESTERDAY. IT'S AN EXTRAORDINARY RESOURCE, IT'S AVAILABLE TO EVERYBODY. WE HOPE THAT YOU WILL KEEP THAT IN THE BACK OF YOUR MINDS AS YOU MEET WITH PEOPLE FROM YOUR COMMUNITIES, FROM YOUR DIFFERENT NATIONS. I GUESS ALSO THEY VISITED THE THE NLM? >> LIBRARY. >> SO I SEUM YOU I ASSUME YOU SAW A COUPLE OF SERVERS, THE BIG SERVER FARM. BUT THE POINT IS, ALL OF THAT INFORMATION IS MADE AVAILABLE FOR EVERYBODY. AND WHEN YOU GO AROUND THE WORLD, THAT'S WHAT PEOPLE THINK ABOUT WHEN THEY THINK ABOUT NIH, INTERESTINGLY ENOUGH, IS PUBMED, YOU KNOW, THE FREE ACCESS TO JOURNALS AND SO FORTH. OKAY. SO WITH THAT, I WOULD JUST LIKE TO OPEN IT UP, I WOULD BE HAPPY TO TRY AND ANSWER ANY QUESTIONS. THOSE QUESTIONS THAT I DON'T HAVE AN ANSWER FOR, WE'LL CAPTURE AND WE'LL CIRCLE BACK. I KNOW DAVE TOLD ME ABOUT SEVERAL ISSUES THAT YOU RAISED YESTERDAY, WHICH WE'VE CAPTURED, AND OBVIOUSLY WE'LL FOLLOW UP WITH YOU ON, BUT IF THERE ARE COMMENTS, QUESTIONS, I WOULD REALLY WELCOME TO HEAR NOW FROM YOU. >> I WANT TO JUST TAKE A MOMENT FIRST OF ALL TO AGAIN THANK YOU FOR YOUR TIME, THANK YOU FOR YOUR ATTENTION AND YOUR SINCERITY IN HEARING WHAT WE HAVE TO TALK ABOUT. WE HAD A CAUCUS THIS MORNING FOR A WHILE, AND DURING THAT CAUCUS, WE TALKED ABOUT SOME TOPICS THAT WE WANTED TO BRING UP WITH YOU TODAY. I MADE A LIST OF THE TOPICS, I'M NOT NECESSARILY THE ONE THAT'S GOING TO TALK ABOUT THEM, BUT -- AND I MAY POINT SOME FOLKS OUT AS WE DO, BUT KIND OF THE PRIORITIES THAT WE TALKED ABOUT THAT WE WANTED TO START WITH WAS DATA SHARING, AND HOW WE ENVISION THAT AND THE ISSUES THAT WE MIGHT SEE WITH THAT. SO I AM GOING TO FIRST OF ALL POINT TO DENISE, BECAUSE I KNOW THIS IS AN AREA OF HER EXPERTISE. >> SURE, THANK YOU. SO ONE OF THE PRESENTATIONS THAT WE HAD YESTERDAY, ERIC DISHMAN TALKED TO US ABOUT THE "ALL OF US" INITIATIVE, AND SO I JUST WANTED TO SHARE KIND OF SOME OF THE COMMENTS THAT KIND OF I SHARED AT THAT POINT IN TIME. I THINK THAT'S ONE OF THOSE AREAS WHERE I HEAR ABOUT THE RESEARCH PROJECT AND PART OF ME IS EXTREMELY EXCITED, DOESN'T WANT AMERICAN INDIAN AND ALASKA NATIVE PEOPLE TO BE LEFT OUT OF ALL OF THE POTENTIAL FANTASTIC USEFUL INFORMATION THAT COULD COME OUT OF THAT INITIATIVE. BUT I ALSO, ON THE OTHER HAND, PART OF ME IS ALSO TERRIFIED WHEN I THINK ABOUT AMERICAN INDIAN AND ALASKA NATIVE PARTICIPATION. PART OF THAT IS, I THINK ONE OF THE COMMENTS I HAD FOR ERIC DISHMAN IS THAT, YOU KNOW, THE POWERPOINT REALLY DIDN'T TALK TO SOME OF THE VERY REAL RISKS, AND THERE ARE RISKS WITH THAT TYPE OF RESEARCH. WE DON'T KNOW KIND OF WHAT'S GOING TO COME OUT OF THAT, AND THERE ARE IMPLICATIONS, NOT ONLY AT THE INDIVIDUAL LEVEL, BUT FOR COMMUNITY LEVEL HARMS. AND I KNOW THAT NIH HAS -- ENCOURAGES OPEN DATA SHARING, AND THERE'S GOOD REASONS FOR THAT. HOWEVER, MANY TRIBAL NATIONS ARE CONCERNED ABOUT THAT AND HAVE DATA SHARING LIMITATIONS KIND OF IN PLACE. IT'S NOT JUST THE SHARING OF THE DATA, IT'S KIND OF HOW THAT DATA IS DESCRIBED AND IS IT -- DOES IT DESCRIBE CONTEXTUAL FACTORS APPROPRIATELY, BUT ALSO DO RESULTS GET BACK TO AMERICAN INDIAN ALASKA NATIVE COMMUNITIES, IS THERE A BENEFIT THAT COMES BACK TO ALASKA NATIVE AND AMERICAN INDIAN COMMUNITIES, SO WE'RE AWARE THAT THERE'S THIS KIND OF NIH DATA SHARING POLICY, AND I KNOW THAT THERE ARE EXCEPTIONS TO THAT. YOU CAN WRITE ABOUT THAT IN -- INVESTIGATORS CAN WRITE ABOUT THAT IN A GRANT APPLICATION. HOWEVER, THAT PUTS A LOT OF RESPONSIBILITY ON INDIVIDUAL INVESTIGATORS, AND I THINK IT ALSO CAN PUT PROGRAM OFFICERS, INSTTUTES KIND OF IN A BIND IN THAT OBVIOUSLY THEY WORK FOR NIH, THEY WANT TO SUPPORT THE NIH DATA SHARING POLICY, BUT ONE OF THE QUESTIONS THAT I THINK WE HAVE IS, IN INSTANCES WHERE THINGS LIKE THE OPEN DATA SHARING POLICY KIND OF ARE IN -- KIND ARE OF AT ODDS WITHIN OW AMERICAN INDIAN AND ALASKA NATIVE GOVERNMENTS KIND OF WANT TO APPROACH RESEARCH GOVERNANCE, LIKE WHAT ARE THE PROCESSES, HOW CAN THAT BE KIND OF DEALT WITH AT A BIGGER LEVEL, BECAUSE WE HEARD SOME EXAMPLES OF WHERE PEOPLE HAVE WRITTEN IN THEIR GRANT APPLICATION, THAT IS UP TO THE TRIBE WHAT IS SHARED, THERE'S MAYBE TRIBAL RESOLUTIONS PASSED, BUT BASICALLY THE ANSWER BACK HAS BEEN, WELL, WE DON'T AGREE WITH THAT AND -- SO, WE HAD KIND OF SOME PROCESS-LEVEL QUESTIONS ABOUT THAT. >> SO YOU'VE CAPTURED IT PERFECTLY. AND OF COURSE WE HAVE TO BE SENSITIVE TO THE SOVEREIGN RIGHTS OF TRIBAL NATIONS. I DON'T THINK THERE'S ONE ANSWER THAT FITS ALL TRIBAL NATIONS, THOUGH, BECAUSE IN MY VERY, VERY LIMITED EXPERIENCE, I HAVE SEEN VARIATION AMONG DIFFERENT NATIONS AS TO HOW THEY VIEW THESE ISSUES. ALTHOUGH THERE CERTAINLY IS EUN UNANIMITY THAT THERE'S A CAUSE FOR CONCERN, OKAY? NO ONE HAS SAID THERE IS NO CAUSE FOR CONCERN, BUT I DO THINK THERE'S A VARIATION IN HOW AT LEAST, AGAIN, THE SMALL SUBSET OF TRIBES THAT I HAVE VISITED HAVE SAID THAT THEY WOULD CONTEMPLATE DEALING WITH THIS. I THINK GROUPS LIKE THIS ONE ARE ABSOLUTELY ESSENTIAL TO HELP US MOVE FORWARD BECAUSE THIS COULD BE A FIRST LEVEL GUIDANCE TO US AS TO HOW TO NAVIGATE THIS, AND AGAIN, APPRECIATING THAT NOT ALL THE TRIBAL NATIONS WILL FEEL THE SAME, BUT AT LEAST WE CAN BEGIN TO LAY DOWN SOME COMMON ELEMENTS AS A STARTING POINT. NOW WITH REGARD TO THE "ALL OF US" PROGRAM, AS I'M SURE ERIC MENTIONED, THERE ARE TWO COMPONENTS. ONE IS AN INDIVIDUAL CAN VOLUNTEER AND THAT'S NOT QUITE LIVE YET BUT WILL BE IN THE NOT TOO DISTANT FUTURE, AND THE OTHER COMPONENT IS WITH HEALTHCARE ORGANIZATIONS COMING IN, BUT ALWAYS INDIVIDUALS CAN SAY YES OR NO IN TERMS OF WHETHER THEY WISH TO PARTICIPATE PARTICIPATE. WE HAVE ANOTHER PROGRAM, AND I BELIEVE YOU HEARD FROM MATT GILMAN, WHERE INDEED, ONE OF THE FUNDED PROJECTS, AND I DON'T KNOW IF -- CAME IN WITH THIS EXPLICIT ISSUE, AND WHAT WE PLEDGED WAS TO TALK ABOUT IT, BECAUSE WE COULDN'T JUST COME UP WITH AN ANSWER BUT WE DID PLEDGE TO TALK ABOUT IT AND WE CERTAINLY ENCOURAGED THE INVESTIGATOR, AND THIS WAS PRIOR TO MATT JOINING NIH, SO I WAS THE ONE WHO ACTUALLY TOOK THE PHONE CALL. WE ENCOURAGED THE INVESTIGATOR TO COME IN WITH THE APPLICATION BECAUSE ACKNOWLEDGING THAT WERE ISSUES, ACKNOWLEDGING THAT THERE IS CONCERN, BUT THAT IN AND OF ITSELF SHOULD NOT BE A BARRIER TO APPLYING AND INDEED THE PERSON DID. SO I GUESS I WOULD TURN IT BACK, WE'RE WILLING TO LISTEN BUT WE WILL NEED GUIDANCE. THIS IS A GREAT VENUE FOR GETTING SOME OF THAT GUIDANCE OR AT LEAST THE INITIAL GUIDANCE. WE WILL LOOK VERY MUCH TO THIS GROUP TO HELP US NAVIGATE THIS. AS YOU KNOW, THERE IS POWER IN DATA SHARING. AS YOU KNOW, IT IS NOT WITHOUT INHERENT RISK. IF THE DATA ARE MISUSED. IF THE DATA ARE TAKEN OUT OF CONTEXT. AND WE ARE ALL SENSITIVE TO THAT. SO WHAT WE NEED TO DO TOGETHER IS TO FIGURE OUT WHAT THE BALANCE IS BETWEEN MAXIMIZING THE INHERENT VALUE TO THE PEOPLE WHO CONTRIBUTE THEIR DATA VERSUS THE POTENTIAL RISK, AND WHILE THE "ALL OF US" PROGRAM AS ONE EXAMPLE IS TAKING EXTRAORDINARY MEASURES TO ENSURE CONFIDENTIALITY, THERE ARE ALWAYS RISKS. TO SAY THAT IT IS RISK-FREE, YOU KNOW, JUST -- NO ONE WOULD SAY IT'S RISK-FREE, YOU CAN'T SAY THAT, SO I WISH I HAD A SIMPLE ANSWER, OH, LET'S JUST DO X, Y AND Z. BUT WHAT I DO THINK WE NEED TO DO IS WE NEED TO WORK TOGETHER AS A GROUP TO PARSE THROUGH THIS, AND -- BECAUSE I THINK AT THE END OF THE DAY, THERE ARE CERTAIN ADVANTAGES THAT WE ABSOLUTELY DO NOT WANT ALASKA NATIVES AND AMERICAN INDIANS TO LOSE OUT BY NOT ENGAGING AT THE LEVEL THEY ARE COMFORTABLE WITH. BUT I DON'T KNOW WHAT THAT LEVEL IS AND I DON'T KNOW HOW IT WILL LOOK. I SUSPECT THAT EACH OF YOU HAVE A FAR BETTER UNDERSTANDING OF THAT, AT LEAST FOR YOUR OWN NATION, WHERE THAT SET POINT IS. SO THANK YOU FOR RAISING THE ISSUE. AND LET'S NOT SHY AWAY FROM IT. LET'S REALLY TRY AND TACKLE IT. AND I THINK WE'VE GOT THE RIGHT GROUP, I MEAN, NONE OF YOU ARE -- I MEAN, I'VE INTERACTED WITH SOME OF YOU AND YOU'VE NOT BEEN BASHFUL, WHICH IS WONDERFUL. BUT THAT'S THE POINT. IF EVERYBODY JUST SITS HERE WITH THEIR HANDS FOLDED AND, YES, AND WE TICKED THE BOX THAT WE HAD A MEETING, BUT THAT'S NOT GOING TO GET US ANYWHERE, SO THANK YOU FOR RAISING IT, AND LET'S FIGURE OUT WHAT THE NEXT STEP IS TO REALLY TRY AND MAKE A MOVE FORWARD, YOU KNOW, INCREMENTAL, PERHAPS, BUT A MOVE FORWARD. >> I'M JUST GOING TO KIND OF FOLLOW UP A LITTLE BIT ON THAT. AND THE PRESENTATIONS HAVE BEEN REALLY INTERESTING, SO WE STRUGGLE WITH THE BALANCE OF MAKING SURE WE ADVANCE RESEARCH AND SCIENCE TO HELP OUR PEOPLE, AND WE KNOW THAT OUR PERSONAL GENETIC MAKEUPS ARE PROBABLY VERY DIFFERENT, AND SO MEDICINE CAN HELP OR HURT, SO TO REALLY TAYLOR TAYLOR AND INDIVIDUALIZE TREATMENT THAT IS MOST BENEFICIAL TO OUR PEOPLE ARE A WONDERFUL THING. SO THERE'S THAT. SO WE DON'T WANT TO BE LEFT OUT. ONE OF THE THINGS THAT NEW ENGLAND TRIBES ARE EXTREMELY SENSITIVE ABOUT IS THE FACT THAT HISTORICALLY IF YOU GO BACK, WE LOST 90% OF OUR POPULATION BETWEEN THE 1600s AND THE 1700s, AND THEN THE DOM NAPT DOMINANT CULTURE SAID WE COULDN'T INTERMARRY WITH OTHER TRIBES, SO WE WERE ONLY AS CLOSELY RELATED IN OUR TRIBE AS SECOND AND THIRD COUSINS. SO THE ISSUE OF BLOOD QUANTUM AND ANCESTRY-RELATED DNA MARKERS WERE USED AS A WAY TO SAY TRIBES NO LONGER EXIST. SO MY ELDERS, THAT'S THEIR FRAMEWORK, YOU KNOW, AND THAT'S THEIR FRAME OF REFERENCE. AND SO I THINK THAT WE NEED TO ADD THIS TO KIND OF A STANDING AGENDA OR KIND OF A LARGER -- SO I DON'T THINK WE'RE GOING TO SOLVE THOSE ISSUES HERE, BUT I DO THINK IT'S SOMETHING THAT WE NEED TO TALK ABOUT. SO WHO OWNS THIS GENETIC PEERL R. MATERIAL, HOW IS IT USED, IS THE TRIBE CONSULTED. IF AN INDIVIDUAL SAYS I'M GOING TO PARTICIPATE IN ALL OF US AND I'M MOHICAN, DOES ALL THAT INFORMATION THEN GENERALIZE TO THE MOHICAN TRIBE? SO THE TRIBE WOULD SAY NO, AND WE HAVEN'T GIVEN OUR CONSENT TO THAT. SO I THINK THAT THERE ARE ISSUES THAT WE NEED TO TALK ABOUT, AND I THINK THE WORK THAT'S BEING DONE IS REALLY VERY IMPORTANT. THE ECO DISCUSSION, I THOUGHT ACTUALLY MADE ME FEEL A LITTLE BIT BETTER, I FEEL LIKE ALL OF US IS A LITTLE LOOSE, ANYONE CAN RESEARCH ANY TOPIC THAT THEY WANT TO USING THIS DATASET, THAT FELT A LITTLE LOOSE. AND I DID KIND OF READ AHEAD TO THIS AFTERNOON'S PRESENTATION AS WELL. SO I GUESS IT'S A TOPIC WE NEED TO CONTINUE TO TALK ABOUT AS A GROUP, AND AS RESEARCHERS, I THINK THESE ARE REALLY IMPORTANT ISSUES. SO I WOULD PROBABLY JUST LEAVE IT AT THAT, BUT AGAIN, I THINK THE GOAL FOR THIS COMMITTEE AND FOR NIH IS TO ADVANCE SCIENCE TO SERVE OUR PEOPLE. AND SO WHAT'S THE BEST WAY TO DO THAT AND WHAT'S THE BEST WAY TO OFFER PROTECTIONS TO OUR TRIBAL GOVERNMENTS, BECAUSE WE ARE GOVERNMENTS AS WELL AS INDIVIDUAL CITIZENS. >> SO IF I MAY JUST OFFER A FRIENDLY AMENDMENT, I THINK ALL OF US IS STILL VERY MUCH A WORK IN PROGRESS. I THINK THAT MIGHT BE A SLIGHTLY BETTER WAY OF DESCRIBING IT, BUT AGAIN, YOU HAVE FRAMED IT JUST RIGHT. THERE IS NO DOUBT THAT THERE ARE MEDICAL ADVANTAGES IN PROVIDEING A THERAPEUTIC APPROACH BASED UPON GENETICS IN MANY INSTANCES. THE FIELD OF ONCOLOGY IS SORT OF EXHIBIT A IN THIS SPACE. AND CERTAINLY WE'VE GOT TO FIGURE OUT WAYS TO ENSURE THAT THAT LEVEL OF INFORMATION IS AVAILABLE SO THAT PEOPLE GET THE VERY BEST CARE. BUT, ON THE OTHER HAND, AS YOU VERY CLEARLY ARTICULATED, WE HAVE TO DO IT IN A WAY THAT DOESN'T THEN HAVE UNINTENDED CONSEQUENCES SUCH AS, YOU KNOW, EXAMPLES THAT YOU PROVIDED. SO YOU KNOW, I WILL LEAVE IT TO THE GROUP TO FRAME HOW BEST TO PROCEED GOING FORWARD. I, FOR ONE, AM PERSONALLY COMMITTED TO TRYING TO WORK THROUGH THIS. THIS IS SOMETHING THAT THE NIH DIRECTOR, DR. COLLINS, HAS BEEN ENGAGED WITH FOR MANY YEARS, AS HEAD OF THE HUMAN GENOME INITIATIVE WAY BACK. WE WILL DO THE WORK NEEDED BUT WE HAVE TO DO IT TOGETHER. WE CAN'T JUST SIT HERE IN BETHESDA AND DREAM UP SOMETHING AND HOPE THAT WE GET IT RIGHT, BECAUSE -- SO I THINK THIS IS A GREAT PLACE TO AT LEAST START THAT EFFORT. >> SO IT'S LOOSE BUT AS LARRY SAYS, IT'S EARLY. OR YOU SAID IT'S LOOSE. BUT I REALLY THINK THAT THE TIMING IS EXACTLY RIGHT. YOU KNOW, WE HAD THIS DISCUSSION WITH ERIC AND STEPH, THEY'RE LOOKING FOR BROAD INPUT SO THEY UNDERSTAND HOW TO ADAPT THIS PROGRAM TO THE COMMUNITIES, AND THEY'RE REALLY LOOKING WHERE TO GET THAT FROM. WE DON'T WANT IT TO BE ISOLATED AND IDIOSYNCRATIC. AND SO THEY HAVE EMBRACED THIS IDEA THAT THEY WILL COME TO THE TAC FOR PART OF THEIR INITIAL INPUT. THERE ARE OTHER PLACES, BUT YOU CAN THEN HEAR WHAT THEY'RE THINKING AND SPREAD THAT INFORMATION OUT, FIND THE RIGHT PEOPLE FOR THEM, SO MAYBE WE NEED A MORE PERIODIC TOUCH BASE WITH THE PROGRAM AT THE MEETINGS MEETINGS. IS THAT -- OKAY. >> HI, LARRY. [LAUGHTER] >> MY NAME IS ALLISON. ONE OF THE THINGS -- I HAVE TO GIVE THIS CREDIT TO MALIA, THIS MORNING WE WERE TALKING ABOUT THIS WORK DONE OUT OF CANADA, AND IT'S TALKED ABOUT THE INDIGENOUS RESEARCH ETHICS AND IT'S A REAL GOOD DOCUMENT, WE'D ACTUALLY INTRODUCED IT TO THE NATIVE RESEARCH NETWORK AND WE WERE KIND OF WORKING ON IT AND REALLY DORIS COOK WAS THE ONE WHO KIND OF REALLY SPEARHEADED THAT WORK. REAL FINE DOCUMENT IN CANADA. CANADA SEEMS TO BE A LITTLE BIT MORE PROGRESSIVE WITH INDIGENOUS RESEARCH, SO THEY'RE ALSO PROGRESSIVE IN THINKING ABOUT ETHICS, YOU KNOW, AND I THINK SOMETHING LIKE THIS COULD ACTUALLY -- THE DEVELOPMENT OF INDIGENOUS RESEARCH ETHICS DOCUMENT THAT WOULD POSSIBLY BE ENDORSED BY NIH IN ANY KIND OF RESEARCH THAT'S DONE, AND IT COULD DEFINITELY ENCOMPASS DATA SHARING, GENETICS, YOU KNOW, ALL THE BIG TOPICS, YOU KNOW, THAT SOMETIMES WE DON'T KNOW NECESSARILY HOW TO ADDRESS IT BUT MALIA JUST INTRODUCED THE TOPIC THIS MORNING, SO WE'RE GOING TO BE SENDING THAT DOCUMENT AROUND TO EVERYBODY TO SORT OF GET FAMILIAR WITH IT. THAT'S A POSSIBILITY OF HOW TO HAVE THAT CONVERSATION, SO I JUST WANTED TO -- >> WE'RE CERTAINLY WILLING TO LEARN FROM OUR NORTHERN NEIGHBORS. >> AND I THINK WE'VE REACHED THE POINT -- UNLESS SOMEONE HAS MORE COMMENTARY BUT I THINK WE'VE REACHED A POINT THAT SEGUES TO OUR NEXT TOPIC THAT I HAVE LISTED. WHEN WE TALK ABOUT THE BALANCE IN DATA SHARING AND IDEAS AND WORKING ON THIS WITH OTHER TRIBES, I THINK THE THING THAT I ALWAYS THINK OF AND I'M SURE MANY OF THE OTHER PEOPLE AT THE TABLE DO IS, HOW DO WE DO THAT? SOME TRIBES ARE SO MUCH MORE ADVANCED WITH WHAT THEY HAVE AS FAR AS RESEARCH AND DATA AND THEY KNOW, THEY HAVE STORAGE, THEY HAVE ALL OF THAT STUFF. THEY HAVE OTHER TRIBES THAT HAVE ABSOLUTELY NOTHING, AND YOU HAVE 567 OF THESE TRIBES, ALL AT DIFFERING LEVELS. I THINK WHAT WE TALKED ABOUT DURING OUR CAUCUS WAS HAVING PROBABLY IN THE NEXT MEETING, HAVING TRIBES THAT ARE SUCCESSFUL, THAT HAVE PROGRAMS THAT ARE SUCCESSFUL COME IN AND PRESENT NOT ONLY TO US BUT TO YOU HERE AT NIH. ONE OF THE THINGS THAT STEMMED FROM THAT CONVERSATION WAS A CONVERSATION ABOUT CAPACITY BUILDING, AND FUNDING, AND HOW THAT CAN TIE IN, HOW WE'RE GOING TO PUT MONEY ASIDE. I MAY HAVE TO TELL MALIA WHAT TO DO HERE, YOU MIGHT WANT TO YIELD THE FLOOR TO DINA IF YOU COULD, FEEL FREE TO ACCEPT IT STEP IN AT ANY TIME, BUT THE EXAMPLE IS YOU'RE GOING TO HAVE TO HAVE CAPACITY BUILDING IN TRIBES AND NATIONS WHERE THEY HAVE NOTHING. SO WE MIGHT WANT TO LOOK AT THESE FOR LACK OF A BETTER TERM STARTER GRANTS. OKAY, THIS IS WHAT AN IRB IS. THIS IS WHAT THIS MEANS. THIS IS WHAT THAT MEANS. MY TRIBE IS PROBABLY GOING TO BE MAYBE NOT THE BOTTOM OF THAT, BUT THEY'RE GOING TO BE ONE OF THOSE TRIBES THAT'S GOING TO NEED THE BASIC STUFF. WE'RE VERY ADVANCED IN A LOT OF OTHER AREAS. THIS ISN'T ONE OF THOSE. BUT TO GET THERE, YOU ALMOST NEED SOME FUNDING OPPORTUNITIES AND CONSIDERATION FOR THAT, FOR THOSE TRIBES, SO THAT WE'RE ON A MORE LEVEL -- SOMEWHAT LEVEL PLAYING FIELD AS WE MOVE FORWARD. SO I'LL GO AHEAD AND LET DINA TALK TO HER IDEAS AS WELL HERE. >> I YIELD THE FLOOR. >> THANK YOU. GOOD AFTERNOON, DR. TABAK. SO I THINK JUST TO BUILD ON WHAT WE HEARD FROM MS. ONNEN, THE CAPACITY BUILDING AND INFRASTRUCTURE BUILDING CONVERSATION RELATES TO BOTH OUR ABILITY TO OVERSEE RESEARCH AND -- AT THE TRIBAL LEVEL, AND BUILD THE POLICIES AROUND DATA, BUT IT ALSO RELATES TO STORAGE CAPACITY OF DATA AS INFORMATION IS RETURNED, HAVING THE SYSTEMS BEING ABLE TO MANAGE THAT DATA OR ACCESS AND USE IT IN CERTAIN WAYS. IT ALSO HAS TO DO WITH BUILDING RESEARCHER CAPACITY, AND WE HEARD A LOT OF FROM OUR NATIVE SCHOLARS HERE THIS AFTERNOON ABOUT THE IMPORTANCE OF STARTING EARLY. SO I JUST THINK, THINKING WITH THIS GROUP AND ACROSS NIH ABOUT THE GRANT MECHANISMS THAT ARE AVAILABLE TO TRIBAL COMMUNITIES TO BUILD THAT CAPACITY, WE HAVE SOME GREAT EXAMPLES THROUGH NIMHD AND THE CURCA GRANT THAT PROVIDED FIVE YEARS OF FUNDING TO HELP TRIBAL COMMUNITIES BUILD THEIR RESEARCH OVERSIGHT CAPACITY FROM THE GROUND UP IN WAYS THEY FELT MET THEIR NEEDS. IT ALSO PROVIDED A PILOT GRANT MECHANISM WHERE THEY WERE ABLE TO PROVIDE SUPPORT TO INVESTIGATORS KIND OF UP AND COMING INVESTIGATORS, TO DO RESEARCH WITH TRIBAL COMMUNITIES. I THINK WE NEED TO BE CAREFUL ABOUT FUNDING MECHANISMS THAT ARE CHANGING OR JUST BE AWARE OF THE IMPLICATIONS FOR TRIBAL COMMUNITIES WHEN PILOT GRANT MECHANISMS AND OTHER THINGS ARE BUILT IN TO FUNDING ANNOUNCEMENTS AND REQUIRE FUNDING GOING TO JUNIOR INVESTIGATORS WITHIN A PARTICULAR INSTITUTION. AS WE SAW, THE PIPELINE GETS VERY NARROW AND THE NUMBER OF PEOPLE IN THAT PIPELINE IS -- YOU'RE DRAWING ON A REALLY SMALL GROUP OF PEOPLE SO AN INSTITUTION IN NORTH OR SOUTH DAKOTA, FOR EXAMPLE, THAT HAS FUNDING TO DELIVER PILOT GRANTS TO JUNIOR INVESTIGATORS DOING TRIBAL RESEARCH MAY HAVE ONE NATIVE STUDENT WHO'S ELIGIBLE OR RESEARCHER WHO'S ELIGIBLE TO RECEIVE THAT FUNDING. SO I THINK THINKING CRITICALLY ABOUT THE WAY THOSE GRANT MECHANISMS ARE SET UP TO ACCOUNT FOR SOME OF THOSE NEEDS, AND I THINK -- I KNOW NIH IS IN THE BUSINESS OF RESEARCH AND BUILDING RESEARCH IN WAYS THAT WE TYPICALLY THINK OF AS CLINICAL RESEARCH BUT REALLY CAPACITY CAN TAKE SEVERAL DIFFERENT AVENUES IN OUR COMMUNITIES, SO ALWAYS HAVING THAT IN THE FRONT OF OUR MIND. >> AGAIN, SO I'M FAMILIAR WITH THE EXAMPLE THAT YOU GAVE, AND I THINK IT'S HELPFUL TO US TO KNOW WHAT WORKED, WHAT COULD WORK BET BETTER. I WOULD AGAIN OFFER A FRIENDLY AMENDMENT, I DON'T LOOK AT IT AS A PIPELINE, IT'S A FUNNEL, BECAUSE OF EXACTLY WHAT YOU SAID. SO FEW, YOU KNOW, COME OUT THE OTHER END. AND BECAUSE OF THAT, YOU HAVE TO BE COGNIZANT OF WHO IS ELIGIBLE, WHO'S NOT, AND SO FORTH. AND WE SOMETIMES LOSE SIGHT OF THAT. BUT I THINK DURING THE COURSE OF YOUR DELIBERATIONS, IF THERE ARE THINGS THAT JUST ARE SO OBVIOUS THAT WE SHOULD BE CONTEMPLATING DOING MORE OF IN WAY OF SUPPORT, OR A DIFFERENT WAY OF PROVIDING THE SUPPORT, WE NEED TO KNOW, BECAUSE WE DON'T KNOW WHAT WE DON'T KNOW, RIGHT? I MEAN, THAT'S THE PROBLEM. AND OF COURSE THE DATA CAPACITY ISSUES THAT YOU SPEAK TO, DIFFERENT SCALE, BUT THE WHOLE NIH IS TRYING TO COME TO GRIPS WITH THIS. AS WE SORT OF ARE ENGULFED IN DATA. AND YET, IF WE REALLY ARE SERIOUS ABOUT BUILDING CAPACITY, THEN WE HAVE TO DEAL WITH THIS, BUT WE MAY NOT KNOW EXACTLY HOW BEST TO APPROACH IT. SO I THINK THE MORE GRANULARITY THAT YOU ARE ABLE TO OFFER, UNDERSTANDING THAT WHAT WOULD WORK IN YOUR COMMUNITY MAY NOT WORK IN EVERYBODY'S, BUT AT LEAST IT'S A STARTING POINT, SO I WOULD CERTAINLY ENCOURAGE THAT, BUT I DO THANK YOU, THOUGH, FOR POINTING OUT THE NIMHD PROGRAM AS ONE. >> I KIND OF WANT TO GIVE A PLUG FOR THE NARCH GRANTS THAT HAS A BUILDING CAPACITY COMPONENT TO IT AND I KNOW NOT ALL TRIBES -- AGAIN, IT'S A REAL COMPETITIVE NATURE. I KNOW THAT WITH OUR TRIBE, WE DO HAVE A NARCH GRANT, AND WHEN WE THINK ABOUT BUILDING CAPACITY, IT'S REALLY -- I CAME FROM THE UNIVERSITY TO THE TRIBAL SETTING, AND TO ME BUILDING CAPACITY IS REALLY ELEMENTARY, YOU KNOW? IT'S THE MATTER OF EVEN JUST FINDING A SERVER THAT, YOU KNOW, FOR THE PARTICULAR RESEARCH PROJECT, IT'S LIKE REALLY TRADING PEOPLE UP, YOU KNOW, IT TAKES A LITTLE BIT LONGER IN TIME TO GET THEM TRAINED UP TO CONDUCT INTERVIEWS, DO FOCUS GROUPS, AND WHEN WE THINK ABOUT CAPACITY BUILDING, IT REALLY KIND OF GOES BACK TO MAYBE UNDERSTANDING THAT IT TAKES A LITTLE BIT MORE TIME TO BUILD THAT CAPACITY. IT'S JUST A DIFFERENT PROCESS, IT'S A DIFFERENT WAY OF THINKING, YOU KNOW, IT'S KIND OF CULTURAL. RESEARCH IS THE WAY CULTURE IS BUILT, IT'S THROUGH A CULTURAL LENS, SO WHEN WE THINK ABOUT TRIBAL RESEARCH, IT'S A DIFFERENT PERSPECTIVE. IT DOESN'T MEAN IT'S ANY DIFFERENT BUT IT'S JUST LOOKING AT A LITTLE BIT DIFFERENTLY, SO IT'S TAKING THAT TIME TO GO FROM ONE PERSPECTIVE TO ACTUALLY GOING OVERLOOKING AT THE TRIBAL PERSPECTIVE AND THEN TRYING TO SWING IT BACK. SO THEN I GUESS THAT'S A PROCESS THAT I NEVER THOUGHT ABOUT UNTIL I WENT OVER TO THE TRIBAL SIDE. TO LOOK AT RESEARCH. I CAN UNDERSTAND THE BUILDING CAPACITY PIECE IS JUST A LITTLE BIT MORE TIME-CONSUMING, THERE'S CHALLENGES THERE THAT I DIDN'T THINK THERE WERE CHALLENGES FROM THE ACCOUNTING END OF IT, WHERE UNIVERSITIES ARE SO USED TO GETTING RESEARCH GRANTS BUT TRIBES -- IT'S A DIFFERENT KIND OF A FUNDING MECHANISM THAT THEY JUST HAVE TO LEARN A DIFFERENT PROCESS. IT IS DIFFERENT. SO JUST KIND OF, YOU KNOW, THAT EXPERIENCE. I DON'T KNOW IF NARCH HAS EVER COME BACK WITH REAL LESSONS LEARNED, BECAUSE I DO BELIEVE, AND I KNOW RESEARCHERS SAY THIS, THEY'VE LEARNED MORE FROM THE GRANTS THAT DIDN'T YIELD ANY OUTCOMES, THERE'S SO MUCH INFORMATION THEY LEARNED. I THINK IT'S THE SAME THING WITH THE NARCH. IF WE CAN KIND OF TAKE AND FIGURE OUT HOW TO GET THE LESSONS LEARNED FROM THOSE GRANTS THAT HAVE COME BEFORE, WHAT IS IT THAT WE CAN BUILD IN TO THE FUTURE NARCH GRANTS FOR BUILDING CAPACITY. >> SO AGAIN, I THINK WHEN YOU DEAL WITH HETEROGENEOUS STARTING POINTS, YOU DO HAVE TO BUILD IN SOME ELASTICITY, RIGHT? WHAT COMES OUT THE OTHER END SHOULD BE THE SAME RIGOR, THE SAME QUALITY. BUT HOW YOU GET THERE MAY BE A LITTLE DIFFERENT. AND THAT'S FINE. I THINK THE POINT OF LESSONS LEARNED, I AM SURE I'M LOOKING TO NIGMS FOLKS, I'M SURE THAT THEY'VE DONE LESSONS LEARNED FOR MANY IF NOT EVERY PROGRAM THEY HAVE, BUT WHETHER IT GETS CIRCLED BACK, THAT'S THE PART I DON'T KNOW. BUT IT'S CERTAINLY AN EXCELLENT IDEA. AND IT SHOULD BE DONE NOT ONLY WITH THE NARCH PROGRAM, ALTHOUGH THAT IS ONE OF THE CENTER PIECE PROGRAMS OBVIOUSLY, BUT WITH ANY PROGRAM, SO THAT WE CAN ALL LEARN. BECAUSE AGAIN, WHEN A PROGRAM OFFICER HERE RIGHTS UP THE FUNDING OPPORTUNITY ANNOUNCEMENT, AND IS VERY ERNEST, VERY SERIOUS, VERY WELL INTENDED, HE OR SHE MAY PUT SOMETHING IN THERE THAT MAKES PERFECT SENSE SITTING HERE IN BETHESDA, MARYLAND, BUT IT MAY NOT MAKE AS MUCH SENSE FOR SOMEBODY SITTING WHERE YOU ARE. SO -- BUT UNLESS WE'RE TOLD THAT EXPLICITLY, WE MAY NOT PICK UP ON THAT. SO MAYBE ONE THING THAT YOUR GROUP MIGHT WANT TO DO IS TO ENGAGE IN A SORT OF SYSTEMATIC REVIEW OF LESSONS LEARNED OF THE MAJOR RESEARCH PROGRAMS OR PROGRAM TYPES SO THAT WE CAPTURE THINGS LIKE THAT. UNLESS WE DO IT SYSTEMATICALLY, IT MAY JUST BE -- I'M LUCKY ENOUGH TO BUMP INTO YOU, AND YOU MENTIONED SOMETHING TO ME AND I WRITE IT DOWN, YOU KNOW, BUT RATHER THAN, YOU KNOW, DO THE DEAL SERENDIPITOUSLY, WE DO IT IN A SYSTEMATIC WAY, MAYBE WE HAVE A BETTER CHANCE OF ENHANCING IT GOING FORWARD FOR EVERYBODY. >> I THINK THAT'S A REAL GOOD IDEA BECAUSE I THINK IT COULD BE A TWOFOLD PROCESS, BECAUSE ONE IS TO INFORM THOSE TRIBES THAT HAVEN'T HAD OPPORTUNITY TO HAVE A NARCH GRANT, WOULD BE ABLE TO DO THE BUILDING CAPACITY, BUT I ALSO THINK THAT INFORMATION CAN BE UTILIZED FORT REVIEW PROCESS, THE PROPOSAL REVIEW PROCESS. I KNOW THAT WHEN PEOPLE REVIEW ESPECIALLY IN NATIVE COMMUNITIES, YOU KNOW, THEY'RE STILL LOOKING THROUGH THEIR OWN CULTURAL LENS, SO WHAT THEY THINK IS, YOU KNOW, NOT MANAGEABLE, AND THEY MAY GET A POOR RATING, WHEN, IN FACT, IT IS MANAGEABLE AND IT IS SOMETHING THAT TRIBES HAVE DEALT WITH, BUT THAT LESSONS LEARNED COULD INFORM THE REVIEW PROCESS THAT THESE ARE THE BUILDING MECHANISMS AND THEY COULD UTILIZE THAT INFORMATION JUST AS WELL. >> I THINK THAT'S A VERY VALID POINT. AND WE DO THIS ALL THE TIME FOR REVIEWS. THE PROGRAM OFFICERS WILL TYPICALLY HAVE A CONVERSATION WITH A SCIENTIFIC REVIEW OFFICER TO JUST SORT OF REVIEW ELEMENTS THAT NEED TO BE CONSIDERED, YOU KNOW, DURING THE REVIEW, AND IT WOULD BE ENTIRELY APPROPRIATE TO SAY NOW REMEMBER, HERE'S SOME OF THE LESSONS LEARNED, AND IT WOULD HELP. IT WOULD HELP FACILITATE THE REVIEW SO THAT IF SOME GUY FROM BROOKLYN SAID, WELL, WOW, THEY COULD NEVER DO THIS, YOU KNOW, THE HAND COULD GO UP AND SAY, NO, WAIT, TIME OUT, YOU KNOW, IN THE LESSONS LEARNED, X, Y AND Z. SO THAT'S PERFECTLY A GOOD IDEA. >> HI. MY NAME IS MARSHA AND I'M WITH THE GREAT PLAINS TRIBAL HEALTH BOARD TODAY. I THINK ONE OF THE THINGS THAT'S REALLY IMPORTANT IS THAT THERE'S AN ACKNOWLEDGMENT THAT THE TRIBES HAVE BEEN DOING RESEARCH FOR THOUSANDS OF YEARS. THIS ISN'T SOMETHING THAT'S NEW. I WAS VISITING WITH MR. PHELPS EARLIER. THE NAVAJO HAVE ALL TYPES OF CORN, YOU KNOW, THEY'VE BEEN BREEDING HORSES IN THE PLAINS, THERE'S BEEN LOTS AND LOTS AND LOTS OF RESEARCH. IT JUST HASN'T BEEN AT THE SAME IF CAPACITY OR THE SAME WAYS THAT IS BEING DONE HERE. BUT I THINK THAT EVERYBODY HAS A COMMITMENT TO SCIENTIFIC RIGOR. IT'S IN EVERYBODY'S BEST INTEREST. BUT THERE'S BEEN A LOT OF COMPLICATIONS. THERE'S BEEN SES GEOGRAPHICAL ISSUES, THERE'S LOTS OF REASONS WHY THE TRIBES ARE NOT AT THE SAME POINT. THE OPPORTUNITIES THROUGH NARCH, THROUGH SOME OF THE OTHER ACTIVITIES THAT ARE HAPPENING ARE GREAT, BUT SO OFTEN THOSE DOLLARS GO TO INSTITUTIONS THAT NEVER THEN CIRCULATE BACK INTO BUILDING CAPACITY IN THE COMMUNITIES. SO GOING BACK TO WHAT'S BEEN SAID, I THINK IT WOULD BE REALLY BENEFICIAL FOR BUILDING CAPACITY IF THERE WAS SOME KIND OF ACKNOWLEDGMENT OR SOME KIND OF -- SOMETHING WORKED IN TO ACCOUNT FOR TRIBAL KNOWLEDGE IN SOME OF THESE APPLICATIONS, SO THAT PEOPLE ON THE GROUND WOULD HAVE AN OPPORTUNITY TO BE COMPETITIVE. >> I GUESS I HAVE TO -- I NEED TO THINK ABOUT THAT ONE A LITTLE BIT. I UNDERSTAND WHAT YOU'RE SAYING. WHAT I'M TRYING TO THINK THROUGH ARE HOW IT TRANSLATES, RIGHT? SO USING THE EXAMPLE OF CORN, SO IT'S QUITE LIKELY YOU HAVE SOME PRETTY GOOD CORN GENETICISTS OUT THERE, PERHAPS NOT FRAMING IT AS GENETICS BUT CERTAINLY AS BREEDING, CROSS BREEDING AND SO FORTH. I MEAN, SO AGAIN, I GUESS IT WOULD HELP ME, IF YOU COULD SORT OF DEVELOP THAT ONE STEP FURTHER AND GIVE -- PROVIDE -- I'M NOT PUTTING YOU ON THE SPOT, WE'LL DO IT NEXT TIME, BUT SORT OF GIVE ME AN EXAMPLE. SO THE THING THAT CAME TO MY MIND, WHICH MAY OR MAY NOT BE RELEVANT IS, SO YOU WANT TO BEGIN TO EXPOSE YOUNG PEOPLE TO SIGH SCIENCE. AND YOU COULD USE, AS THE TRAINING VEHICLE, YOU KNOW, THE GENETICS OF MAIZE. WHICH IS POWERFUL STUFF. BY THE WAY, WE'RE EXPERTS AT THIS. AND HERE'S THE PROGRAM THAT WE COULD PUT IN PLACE -- I'M MAKING THIS UP ON THE FLY HERE, BUT MAYBE THINGS OF THAT NATURE, BUT IT PROBABLY GOES BEYOND THAT. SO IF IT DOES, IF YOU COULD MAYBE COME BACK WITH SOME OTHER EXAMPLES TO HELP US. >> BOTANICALS. >> THAT'S ANOTHER VERY GOOD EXAMPLE. >> HERE'S KIND OF A GOOD EXAMPLE, I THINK. DR. MALDONADO DOWN IN ECUADOR HAD DONE A STUDY AND WHAT HE DID WAS HE WAS STUDYING THEIR TRADITIONAL MEDICINE PEOPLE AND HOW THEY DID DIAGNOSIS AND THEN HE COMPARED IT TO WESTERN MEDICINE. AND WHEN HE DID THE STUDY, HE FOUND OUT THAT, YOU KNOW, THEY WERE ACTUALLY PRETTY SPOT-ON, I THINK IT WAS -- AND I CAN'T RECALL, IT'S BEEN A LONG WHILE SINCE I'VE SEEN HIS WORK, BUT WHAT TRADITIONAL PEOPLE SAID IT WAS A BLOOD DISEASE WHEN THEY CAME AND THEY WORKED ON THEM, AND THEN WHAT THE WESTERN MEDICINE SAID IT WAS A HEART DISEASE. SO THEN WHEN THEY REALLY LOOKED AT THAT, THERE WAS -- IF YOU THINK ABOUT THE BLOOD AND THE HEART, THAT THEY REALLY WERE -- AND I KNOW THAT DR. JEFF HENDERSON WAS DOING A STUDY ON TRADITIONAL PEOPLE, THE MEDICINE PEOPLE AT SIOUX BECAUSE THEY WERE WILLING TO STEP FORWARD AND HAVE SOMETHING LIKE THAT STUD DEED. I THAT STUDIED. I THINK THE DIFFICULTY IS WHEN WE REALLY LOOK AT THE RESEARCH PROPOSALS, WHAT'S REAL DIFFICULT IS TO BE ABLE TO EXPLAIN SOMETHING INDIGENOUS AND HOW WE WANT TO LOOK AT IT WHEN WE'RE REALLY CONFINED, AND WHEN I WAS AN EARLY CAREER RESEARCHER, I ASKED THIS QUESTION, WAS THAT HOW DO WE, WITHIN A CERTAIN LIMITED -- IN PAGES THAT YOU ALREADY CONDENSED AND YOU HAVE TO BE VERY CONCISE, AND YOU REALLY WANT TO DO SOMETHING THAT IS OUTSIDE OTHER PEOPLE'S CULTURAL LENS, SO YOU HAVE TO SOMETIMES EXPLAIN MORE. I WAS TRYING TO ADVOCATE, YOU KNOW, IF YOU'RE DOING CULTURAL RESEARCH, YOU SHOULD BE ABLE TO DO A TWO-PAGE APPENDIX ON WHAT IT IS YOU'RE DOING IN ADDITION, BECAUSE TO BE CONTAINED WITHIN THAT AND TO BE EXPECTED -- BECAUSE IT REALLY IS TO TRY TO GET THE READER TO UNDERSTAND WHAT IT IS THAT YOU WANT TO DO. >> THE OTHER BARRIER THAT I'VE ENCOUNTERED IN THIS GENERAL SPACE IS THE CONCERN EXPRESSED BY MEMBERS OF TRIBAL NATIONS THAT THEIR MEDICINE, THEIR APPROACH, NOT BE EXPLOITED. NOT BE STOLEN, AS IT WERE. SO THERE'S THAT BALANCE ALSO THAT ONE NEEDS TO, I THINK, ADDRESS. I HAVE NO DOUBT THAT HOW TRADITIONAL MEDICINE PEOPLE DIAGNOSE DISEASE COULD INFORM WESTERN MEDICAL DIAGNOSES, YOU KNOW, WE'VE SEEN MANY EXAMPLES OF THIS IN DIFFERENT CULTURES AROUND THE WORLD, AND NO DOUBT CERTAIN TRADITIONAL MEDICINES, FOR LACK OF A BETTER WORD, COULD ALSO INFORM. BUT THEN THERE'S ALWAYS THIS DISQUIET THAT IS EXPRESSED -- WELL, I SHOULDN'T SAY ALWAYS. SOMETIMES THERE IS A DISQUIET EXPRESSED, WELL, NOW WAIT A MINUTE, HERE THEY COME, THEY'RE GOING TO COME IN, THEY'RE GOING TO TAKE ALL OF THE PLANT OR, YOU KNOW, WHATEVER THE PLACE IS THAT YOU GET THE MATERIAL FROM, AND EXPLOIT IT. AND SO SOMEHOW WE'VE GOT TO FIND A BALANCE, AND SO AGAIN, I THINK ANOTHER THING TO SORT OF WRESTLE WITH. >> AND ON THAT FRONT, THAT'S WHAT I HEAR CERTAINLY AROUND THE TABLE WE TALKED ABOUT, I HEARD YOU ALSO KIND OF COMMIT TO, IS A FOCUS ON PROCESS IS SO CRITICAL, RIGHT? A LOT OF TIMES IN RESEARCH, WE GET CAUGHT UP IN THE WHAT. WHAT IS IT, HOW DO WE DEFINE IT, AND SO MUCH OF WHAT I FEEL LIKE OUR CONVERSATIONS ARE, IT'S ABOUT THE HOW. HOW IT'S DONE. BECAUSE THE WHAT IS GOING TO BE DIFFERENT ACROSS SO MANY DIFFERENT TIMES AND PLACES, BUT ALSO IN RELATION TO THIS -- ABOUT AN EXAMPLE, I FEEL LIKE WE HAD ONE EARLIER TODAY WHEN WAS IT ERIC WHO WAS UP TALKING ABOUT THE ECHO PROJECT AND HE PUT UP THE NAVAJO CASE STUDY, AND WALTER TOOK US RIGHT THROUGH AND SAID LET ME SHOW YOU, POINT OUT WHERE MY COMMUNITIES ARE, AND HE SAID WHAT I SEE, I DON'T WANT TO PUT WORDS IN HIS MOUTH BUT -- IS WATER. IF YOU WANT TO UNDERSTAND WHAT'S GOING ON WITH CHILDREN'S HEALTH, THIS IS WHAT YOU NEED TO UNDERSTAND, HOW THE NAVAJO NATION IS INVESTING IN GOVERNANCE AROUND WATER INFRASTRUCTURE, WHAT THE HISTORY -- WHEN I THINK ABOUT GILA RIVER AND THE HUGE DIABETES INCIDENCE, IT WAS RELATED TO WATER. THESE ARE NOT MY COMMUNITIES, BUT I CERTAINLY RELATE TO THIS NOTION AND SO THAT'S WHERE THE CONVERSATION OPPORTUNITY TO TALK WITH ECHO EVEN BEFOREHAND, TO COME IN HERE I THINK AND BEGIN TO THINK ABOUT -- HE TALKED ABOUT SOLUTIONS ORIENT ORIENTED RESEARCH WHICH I THOUGHT WAS REALLY POWERFUL AND A COMMITMENT TO BRINGING FORWARD POLICY IMPLICATIONS FROM THE RESEARCH. WALTER MENTIONED MR. PHELPS THAT WE'RE TALKING ABOUT A $1 TRILLION INFRASTRUCTURE PACKAGE, HOW DO WE GET THESE CONVERSATIONS OUT THERE IN TERMS OF WHY WE DO RESEARCH AS CHIEF MALERBA PUT IT ON THE TABLE FOR THE BENEFIT OF OUR COMMUNITY. SO IF WE CAN GET TO WHAT I'M HEARING ACROSS THE TABLE, A BETTER PROCESS, WE CAN GET TO BETTER OUT COME AT THE END OF THE DAY. >> AND I WOULD CERTAINLY -- I'VE HAD THE GREAT PRIVILEGE OF VISITING SOME OF YOUR COMMUNITIES. YOU LEARN SO MUCH MORE BY DOING THAT. SO IT'S GREAT TO TALK ABOUT IT, BUT TO FOLLOW UP AND ACTUALLY VISIT, YOU KNOW, AND IT'S -- SO TO THE EXTENT THAT IT'S, YOU KNOW, FEASIBLE, I WOULD CERTAINLY ENCOURAGE THAT TO OCCUR, AND AGAIN, I HAVE VISITED SEVERAL OF YOUR NATIONS AND I'M VERY PRIVILEGED TO DO SO, BUT THE OPPORTUNITY TO SPEAK WITH THE TRIBAL LEADERSHIP, SOME OF THE YOUNG PEOPLE, ACTUALLY TO SEE, YOU KNOW, WITH MY OWN EYES SOME OF THE THINGS THAT YOU'RE REFERRING TO, THAT IS VERY, VERY, VERY POWERFUL. SO I WOULD CERTAINLY ENCOURAGE THAT TO THE EXTENT THAT IT'S FEASIBLE. >> DOES ANYBODY ELSE HAVE ANYTHING? WE HAVE A FEW MINUTES. WE COVERED MOST OF WHAT WE REALLY WANTED TO COVER TODAY, I THINK. BUT I JUST WANT TO MAKE SURE IF ANYBODY ELSE HAS ANY COMMENTS? OKAY. >> DR. TABAK, I THINK YOU PROBABLY ALREADY KNOW WHAT I TALK ABOUT. BUT I'M REALLY ENCOURAGED BY YOUR UNDERSTANDING OF A PLACE THAT'S REALLY IMPORTANT. THERE'S A PLACE OVER THERE BY -- IN ARIZONA CALLED PHOENIX, AND THEY'RE HAVING A PANEL ON CULTURE AND TRADITIONS WITH REGARD TO THE "ALL OF US" INITIATIVE. I WOULD ENCOURAGE YOU TO BE AWARE OF THAT, EITHER GO OR SEND MR. WILSON DOWN THERE, JUST TO LISTEN. BECAUSE I KNOW YOU'VE BEEN PRETTY GOOD -- REALLY GOOD AT LISTENING TO THINGS. I DON'T THINK YOU FORM OPINIONS AT THE MOMENT, I THINK YOU HAVE A LOT OF THOUGHT BEFORE YOU SAY ANYTHING, AND I APPRECIATE THAT. ONE OF THE WAYS THAT EARLIER YOU HAD TALKED ABOUT VARIATION TO LAY DOWN SOME ELEMENTS, SO I GUESS WHEN WE REALLY LOOK AT OUR SOCIETY, WE DO HAVE SOME ELEMENTS THAT ARE THERE THAT ARE CONSTANT AMONG ALL OF US, 500-SOME TRIBES, AND WORLDWIDE, INDIGENOUS POPULATIONS. BUT THE VARIATION IS THAT WE DO THINGS DIFFERENTLY, EACH ONE OF US, BUT THERE IS THAT OVERALL PICTURE THAT WE WILL PROBABLY DO WELL FROM US AS THE COMMITTEE TO DELVE INTO THAT AND SEE WHAT WE CAN COME UP WITH, AND INDIVIDUAL TRIBES DO THEIR THING THE WAY THE ENVIRONMENT DICTATES. SO ENVIRONMENT IS A REALLY IMPORTANT -- VERY IMPORTANT -- AS FAR AS THINKING ABOUT THINGS BECAUSE THE FEAR THAT WE HAVE MAY BE UNFOUNDED WHEN IT COMES TO THEY'RE GOING TO COME IN AND TAKE OR THEY'RE GOING TO USE THIS, BUT WHEN YOU REALLY LOOK AT IT, IT WILL NOT DO ANY GOOD FROM SOMEONE COMING IN BECAUSE THE ENVIRONMENT IS FOR THOSE PEOPLE THAT ARE THERE BECAUSE THAT'S WHERE THOSE CREATION STORIES COME FROM, THAT'S WHERE THOSE TRADITIONAL MEDICINES ARE, AND IT WON'T WORK FOR THAT ENVIRONMENT, INCLUDING HUMAN BEINGS AND ANIMALS. SO SOMEONE COMING IN WILL PROBABLY NOT UNDERSTAND THAT AND IT PROBABLY WON'T WORK, YOU'LL PROBABLY WASTE A LOT OF FEDERAL FUNDS TRYING TO FIGURE IT OUT. SO ANYWAY, IT WILL BE GOOD FOR US TO BE ABLE TO RESEARCH THAT, BECAUSE AS WE'RE ALL AWARE, A LOT OF THIS KNOWLEDGE HAS BEEN OVER MANY YEARS, HAS BEGUN TO ERODE, THEREBY ERODING OUR WELLNESS, WE NEED TO GO BACK AND PUT THAT IN PLACE. AND THAT'S FOR US TO KNOW, TO TRY TO USE THE METHODS THAT EXIST OUT THERE TO FIGURE IT OUT BECAUSE A LOT OF OUR POPULATION IS YOUNG, WE'VE BEEN EXPOSED TO EDUCATION AND WE'RE MOVING AHEAD ALONG THAT LINE, SO WE HAVE TO FIND THAT BALANCE THEY JUST TALKED ABOUT. JUST FOR SURVIVAL. SO I JUST WANTED TO OFFER THAT MUCH. AND AS FAR AS TRADITIONAL KNOWLEDGE, I'LL ALWAYS AMAZED BY THIS ONE TIME I WILL SAY MEXICO TO ATTEND ONE OF OUR OLDEST CEREMONIES, ALMOST LIKE A CREATION OF THE CREATION STORY, OUR CREATION STORY, DONE IN A PLACE WHERE YOU CAN STILL SEE THE SAND, THE OCEAN SAND -- THE OCEAN HAD RECEDED SO MUCH, BUT THE STORIES CONNECTED SO IF YOU WANT TO FIGURE OUT HOW MANY YEARS IT'S BEEN, IT'S QUITE A LONG TIME. WE WENT THERE, ME AND MY FRIEND, AND YOU HAD TO PREPARE FOR IT, FOUR DAYS, FOUR TIMES YOU HAVE TO DO IT. THEY'RE GETTING READY TO BUILD A STRUCTURE. THIS GUY WENT OVER AND STARTED I WAS STANDING THERE STARTING TO THINK HOW ARE WE GOING TO DO THIS? THEN THEY I ALSO THINK ABOUT THIS YOUNG LADY, RAN OUT OF GAS BY THE SIDE OF THE ROAD, DUG OR TOOK SOME GROUND OUT IN THE DESERT BY THE SIDE OF THE ROAD, LAID HER LITTLE BABY THERE, ALWAYS WOULD BE WONDERED HOW DID SHE KNOW HOW TO DO THAT? SO AGAIN, IT'S THINGS EMBEDDED WITHIN US THAT WE JUST KIND OF INSTINCTIVELY KNOW HOW TO DO. WHEN WE LOOK AT THIS AND WE ARE ABLE TO PUT IT WITHIN THE CONTEXT OF TRADITIONAL KNOWLEDGE AND SCIENTIFIC KNOWLEDGE, I'M SURE THERE'S A TIE SOMEWHERE IN BETWEEN THERE AND THAT ACTUALLY HELPS US, OUR YOUNGER FOLKS, TO KNOW THAT SCIENCE DOES NOT HAVE TO BE FEARED, YOU CAN USE SCIENCE TO GET TO PLACES THAT YOU'VE NEVER DREAMED OF AND BRING YOUR TRIBE ALONG WITH YOU. THAT'S THE BEAUTY OF IT. BUT WE HAVE TO FIGURE OUT YEAH, WE HAVE TO FIGURE OUT HOW TO DO THAT. SO I WANTED TO EXPRESS THAT MUCH AS FAR AS THE TRADITIONAL KNOWLEDGE THAT WE HAVE, AND WE CAN CERTAINLY MOVE AHEAD ON THAT. ESPECIALLY WITH FOLKS HERE WHO ARE SITTING AT THIS TABLE, FROM NIH WHO HAVE AN INTEREST IN OUR WELL-BEING, JUST AS WE DO FOR US, AND I THINK THE FACT THAT WE ARE SITTING HERE AND THANKS TO A LOT OF PEOPLE HERE THAT MANAGED TO BRING THE CONSULTATION COMMITTEE TOGETHER, WE THOUGHT IT WAS IMPOSSIBLE. BUT HERE WE ARE. AND WE'RE SHARING KNOWLEDGE. I THINK THAT'S REALLY, REALLY GOOD. SO THANK YOU FOR LISTENING. >> I THINK WE'RE GOING TO HAVE ONE LAST COMMENT FROM WALTER OVER HERE, AND THEN WE'LL MOVE ON TO OUR NEXT PRESENTATION. >> THANK YOU. DR. TABAK, I GUESS I WANTED TO SAY THAT USING YOUR POSITION WHERE YOU ARE RIGHT NOW, I THINK YOU'RE IN A KEY POSITION TO -- I WAS THINKING ABOUT YESTERDAY'S TOUR AGAIN TO THE LIBRARY AND THE BUNKER UNDERGROUND WHERE ALL THE PRECIOUS DOCUMENTS ARE, AND I WANT TO USE THAT AS AN EXAMPLE OF IF THERE IS A WAY THAT THE INDIAN HEALTHCARE IMPROVEMENT ACT CAN BE PUT IN A BUNKER SO THAT CONGRESS DOES NOT UNDO IT, WE NEED YOUR HELP. BECAUSE NIH AND OUR INDIAN HEALTHCARE IS CRITICALLY AT STAKE, SO I THINK THAT WE NEED ALL THE HELP YOU CAN GET, SO WE NEED YOUR POSITION TO SEND A MESSAGE TO THE SECRETARY OF HEALTH AND TO THE PRESIDENT TO PRESERVE THE INDIAN HEALTHCARE IMPROVEMENT ACT, BECAUSE THAT WHOLE BUNDLE AND NIH, TO ME, THERE'S NO DISTINCTION THAT SHOULD, IT SHOULD BE ONE AND THE SAME. >> NO DOUBT, AT STAC, THIS POINT WAS MADE, AND I THOUGHT ARTICULATED BEAUTIFULLY, AND THE SECRETARY, OF COURSE, IS A PHYSICIAN BY TRAINING, AND CERTAINLY UNDERSTANDS HEALTH-RELATED ISSUES, BUT AS YOU KNOW, IT'S A VERY FLUID TIME RIGHT NOW, AND WE ARE ALL SORT OF WAITING TO SEE HOW THIS PLAYS OUT. BUT I DO TAKE YOUR COMMENT. >> IF WE CAN THANK DR. TABAK, A ROUND OF APPLAUSE, AND THANK YOU. [APPLAUSE] DR. BENNETT, WE'RE READY, I BELIEVE. >> HI, MY NAME IS MICHELLE BENNETT, I'M FROM THE NATIONAL CANCER INSTITUTE. I TOOK A QUICK LOOK AT THE AGENDA AND I RECOGNIZE THAT I'M STANDING BETWEEN YOU AND IT SOUNDS LIKE A TRIP HOME, AND SO I IT'S A PLEASURE TO ACTUALLY BE HERE TODAY FROM THE NCI TO TALK TO YOU A LITTLE BIT ABOUT CANCER GENOMICS AND RESEARCH. SO TODAY I'M GOING TO GIVE A LITTLE BIT OF A BACKGROUND ON CANCER FOR THOSE OF YOU WHO MAYBE ARE NOT AS FAMILIAR WITH THE BIOLOGY OF CANCER, I'M GOING TO TALK A LITTLE BIT ABOUT CANCER GENOMICS AND PRECISION MEDICINE AND I'LL GIVE YOU A BIT OF A SUMMARY AT THE END. I RECOGNIZE THAT DR. BOB KRULL WAS HERE LAST FALL TO TALK TO YOU ABOUT CANCER AT THE POPULATION LEVEL, SO JUST WANTED TO REMIND YOU A LITTLE BIT OF WHAT HE SPOKE ABOUT. THESE ARE STATISTICS ON THE INCIDENCE AND MORTALITY FOR CANCER IN DIFFERENT POPULATIONS. AND IF YOU TAKE A LOOK AT THE PURPLE LINE HERE, THIS IS THE AI AIAN POPULATION FOR INCIDENCE, AND THIS IS FOR MORTALITY. SO YOU CAN SEE FOR BOTH INCIDENCE AND MORTALITY, THE LINES ARE ESSENTIALLY STRAIGHT, WHICH SUGGESTS TO US THAT THIS POPULATION IS NOT BENEFITING FROM THE ADVANCES BEING MADE IN CANCER RESEARCH IN THE SAME WAYS THAT SOME OF THE OTHER POPULATIONS ARE. HE ALSO WENT THROUGH A NUMBER OF THE DIFFERENT ORGAN SITES AND SHARED WITH YOU THAT INCIDENCE OF SOME OF THE CANCERS ARE INCREASING IN NOT JUST THE AI/AN POPULATION BUT OTHERS AS WELL. HERE WE'VE GOT LIVER CANCER INCIDENCES ON THE INCLINE AND MORTALITY AS WELL. AND WE ALSO SEE SOMETHING SIMILAR FOR KIDNEY DISEASE ORCID KNEE OR KIDNEY CANCER, AND WHILE MORTALITY IS RELATIVELY FLAT, WE DO SEE THAT THERE IS A GAP. SO AGAIN, JUST SOME REMINDERS FROM THE PRESENTATION THAT DR. CROYLE GAVE TO YOU LAST FALL. SO AGAIN, I'M HERE TO TALK MORE ABOUT THE BASIC BIOLOGY, THE GENETICS OF CANCER, AND I THINK IT SEEMED LIKE A GOOD PLACE TO START WAS JUST TO ARTICULATE THE FACT THAT CANCER IS VERY COMPLEX. WE HAVE BENEFITED TREMENDOUSLY FROM THE TECHNOLOGICAL ADVANCES THAT WERE FUELED BY THE COMPLETION OF THE HUMAN GENOME PROJECT AT THE BEGINNING OF THE CENTURY, AND THESE ADVANCES HAVE CONTRIBUTED TO A LOT OF PROGRESS IN CANCER RESEARCH AND IN CANCER GENOMICS. ONE OF THE THINGS THAT WE'VE REALLY COME TO LEARN IS THAT CANCER IS NOT ONE DISEASE, BUT CANCER IS REALLY MANY DISEASES. AND THIS IS TRUE EVEN WITHIN ONE PARTICULAR ORGAN SYSTEM. SO, THEREFORE, WE REALIZE THAT NOT ALL CANCERS CAN BE TREATED UNIFORMLY. WE'RE GOING TO CONTINUE TO NEED TO DO RESEARCH IF WE'RE GOING TO MAKE PROGRESS IN THE AREA OF CANCER, AND WE'RE GOING TO HAVE TO CONTINUE TO LEVERAGE THESE ADVANCED TECHNOLOGIES AS WELL AS DEVELOP NEW ONES. IF WE THINK ABOUT HOW CANCER DEVELOPS, CANCER DEVELOPMENT IS ACTUALLY A VERY COMPLEX PROCESS, IT'S NOT LIKE FLIPPING A SWITCH IN THAT A NORMAL CELL ALL OF A SUDDEN BECOMES A CANCER CELL, BUT IT REALLY IS THE RESULT OF MULTIPLE GENETIC ALTERATIONS OCCURRING OVER TIME. AND SO OVER TIME, THEN, THE CELL CAN ACTUALLY DEVELOP CHARACTERISTICS THAT MAKE IT MALIGNANT, THAT IS UNCONTROLLED GROWTH, INNOVATION, METASTASES, AND THERE ARE A NUMBER OF FACTORS THAT CONTRIBUTE TO THE CELL MOVING DOWN THIS PATHWAY FROM A NORMAL CELL TO A CANCER CELL, INCLUDING ENVIRONMENTAL FACTOR, AND THESE ENVIRONMENTAL FACTORS CAN BE WITHIN OUR BODIES, SO THE SURROUNDING BODY ENVIRONMENT, BUT ALSO CAN BE ENVIRONMENTAL EXPOSURES, CAN BE TIME OR AGE, SO AGING IS ACTUALLY ONE OF THE GREATEST RISK FACTORS FOR DEVELOPING CANCER, AND IT CAN ALSO BE INHERITED GENETIC ALTERATIONS. ON THIS NEXT SLIDE, I HAVE A NUMBER OF ENVIRONMENTAL EXPOSURES AND LIFESTYLE FACTORS THAT HAVE BEEN LINKED TO CANCER. I'M NOT GOING TO GO THROUGH AND TALK ABOUT ALL OF THEM BUTLY MENTION A COUPLE OF THEM IN A LITTLE MORE DETAIL. SO TOBACCO CONTINUES TO BE OF GREAT CONCERN. TOBACCO IS A FACTOR IN 20% OF ALL CANCER DEATHS AND IT'S ASSOCIATED WITH 20 DIFFERENT TYPES OF CANCER. THERE'S INCREASING EVIDENCE THAT OBESITY IS RELATED TO AND LINKED TO AS A RISK FACTOR FOR VARIOUS CANCERS INCLUDING LIVER, KIDNEY AND COLORECTAL CANCER, AND I'LL MENTION AFLATOXIN, WHICH IS SECRETED BY A MOLD COMMONLY GROWN ON CORN AND PEANUTS, SO THIS IS SOMETHING TO WHICH THAT WE CAN BE EXPOSED THROUGH THE FOODS WE EAT AND IS NOT ALWAYS VERY OBVIOUS. BUT AFLATOXIN HAS BEEN LINKED TO CANCER DEVELOPMENT AS WELL. SO WE THINK ABOUT THESE ALTERATIONS IN THE DNA SEQUENCE THAT I ALLUDED TO, WE REFER TO THEM OFTEN AS MUTATIONS AND MUTATIONS COME IN A COUPLE OF FLAVORS. THERE ARE GERMLINE MUTATIONS, SO THESE ARE MUTATIONS THAT WE INHERIT FROM OUR MOTHER OR FROM OUR FATHER, IN THOSE CASE, THOSE MUTATIONS ARE PRESENT IN EVERY CELL OF OUR BODY. SO FOR INDIVIDUALS WHO INHERIT MUTATIONS IN GENES THAT CONVEY RISK TO DEVELOPING CANCER OF SOME SORT, THEN THAT PERSON IS ONE STEP CLOSE ARE OR AT A HIGHER RISK TO DEVELOPING CANCER. SOMATIC MUTATIONS ARE THE TYPE OF MUTATIONS THAT ARE ACQUIRED OVER TIME, AND THEY CAN RESULT FROM ERRORS IN DNA REPLICATION, THEY CAN RESULT FROM ENVIRONMENTAL EXPOSURES LIKE THE ONES THAT I JUST MENTIONED, AS WELL AS LIFESTYLE. AT THIS POINT, IT'S PROBABLY A GOOD IDEA TO DISTINGUISH MUTATIONS FROM NORMAL GENETIC VARIATION. NORMAL GENETIC VARIATION IS SOMETHING THAT IS VERY COMMON OBVIOUSLY AMONG US ALL. IF WE THINK OF SOME VERY SIMPLE EXAMPLES OF NORMAL GENETIC VARIATION THAT ARE EXPRESSED THROUGH PHENOTYPES OR WHAT WE SEE, WE MIGHT THINK OF EYE COLOR, HAIR COLOR, HEIGHT AS ONE OF THOSE. SO OUR NORMAL GENETIC VARIATION CAN ALSO CONTRIBUTE TO INCREASING OUR SUSCEPTIBILITY TO DEVELOPING CANCER OR ALSO COULD ALSO PROTECT US AS WELL. SO IT'S ANOTHER WAY OF THINKING ABOUT OUR GENETIC BACKGROUNDS. SO CANCER GENOMICS IS THE STUDY OF THE DNA SEQUENCES WITHIN THE CANCER CELLS, SO THE PARALLEL TO THIS IS THE GENOMICS AND THAT'S WHEN WE JUST LOOK AT THE DNA WITHIN CELLS TO UNDERSTAND WHAT IS CONTRIBUTING TO THE NORMAL FUNCTIONING OF CELLS, SO IN CANCER GENOMICS, WE'RE TRYING TO UNDERSTAND WHAT'S HAPPENING WITHIN THE DNA OF THE CELLS THAT'S CONTRIBUTING TO CANCER RISK. SO OVER A DECADE AGO, THE NCI STARTED UP A PRETTY AMBITIOUS COLLABORATION WITH THE NHGRI, AND THE AMBITION BEHIND THIS EFFORT WAS TO SEQUENCE A NUMBER OF DIFFERENT CANCER GENOMES TO TRY TO BETTER UNDERSTAND WHAT WAS CONTRIBUTING TO THOSE CANCERS, TO TRY TO REALLY UNDERSTAND AT THE GENETIC LEVEL WHAT WERE THE CHANGES THAT WERE OCCURRING IN THE DNA THAT CONTRIBUTED TO CANCER. AND THE GOAL OF DOING THIS RESEARCH WAS TO IMPROVE OUR ABILITY TO DIAGNOSE, TO TREAT AND TO PREVENT CANCER. USING ADVANCED BIOMEDICAL TECHNOLOGIES, DIFFERENT DATA TYPES HAVE BEEN GENERATED THAT ARE ENABLING US TO MAKE BETTER TREATMENT DECISIONS AND IDENTIFY COMMON MISTAKES IN THE DNA THAT CAN THEN BE TARGETED FOR THE DEVELOPMENT OF NEW THERAPIES. OVER 11,000 PATIENTS WERE -- SAMPLES WERE COLLECTED FROM 11,000 PATIENTS IN THE STUDY, AND THE DNA FROM ALL OF THOSE PATIENTS IS BEING STORED IN THE GDC, THE GENOMIC DATA COMMONS, WHICH I'LL MENTION IN JUST A MOMENT. SO IF WE TAKE A LOOK AT THE POPULATIONS FROM WHICH THE SAMPLES WERE DERIVED FOR THE TCGA PROJECT, IT'S FAIR TO SAY THAT THE SAMPLES WERE COLLECTED AT THE CONVENIENCE OF THE RESEARCHERS. WHAT I MEAN BY THAT IS THERE WAS NO EFFORT MADE UP FRONT TO ENSURE THAT THERE WAS REPRESENTATION FROM ALL POPULATIONS AMONG THE SAMPLES THAT WERE COLLECTED. THIS IS WITH THE EXCEPTION OF BLACKS AND AFRICAN-AMERICANS WITH RESPECT TO PROSTATE AND BREAST CANCER. SO AS A RESULT, SEVERAL DEMOGRAPHIC GROUPS ARE UNDERREPRESENTED IN THE TCGA SAMPLES, AND THIS INCLUDES THE NA/AN POPULATION. MAYBE I SHOULD MENTION THAT THIS IS ACTUALLY -- THIS IS PROBLEMATIC FOR A NUMBER OF REASONS, BUT ONE OF THE REASONS IS THAT IF RESEARCHERS ARE INTERESTED IN TRYING TO UNDERSTAND WHY CERTAIN GENETIC VARIATIONS INCREASE RISK TO PARTICULAR CANCER FOR EXAMPLE OR TO TRY TO UNDERSTAND WHY THERE MIGHT BE DIFFERENTIAL RESPONSES TO A CANCER TREATMENT, WE WON'T BE ABLE TO DO THOSE STUDIES OR THOSE STUDIES WON'T BE ABLE TO BE PERFORMED IN ALL POPULATION GROUPS AT THIS TIME. SO I WANTED TO MENTION THE NCI GENOMIC DATA COMMONS, THE GDC AS WE AFFECTIONATELY REREFER TO IT, EXPANDING KNOWLEDGE BASE FOR CANCER THAT STORES GENOMIC AND CLINICAL DATA FOR USE BY THE CANCER RESEARCH COMMUNITY. ONE THING THAT THIS RESOURCE DOES FOR US IS IT ENABLES US TO PROMOTE AND FACILITATE DATA SHARING, AND IT ALSO PROMOTES STRATEGIES FOR MAKING SURE THAT WHEN WE COLLECT TISSUE FROM PARTICIPANTS IN CLINICAL TRIALS OR PARTICIPANTS IN OUR STUDIES, THAT WE MAKE SURE WE'RE DOING THE BEST JOB POSSIBLE TO MAKE SURE THAT ALL THE SAMPLES ARE OF VERY HIGH QUALITY AND THAT WE COLLECT ENOUGH TO DO THE RESEARCH THAT'S INTENDED SO THAT THERE IS NO WASTE. WITH THE ACCUMULATION OF MORE AND MORE DATA, WE'LL HAVE MORE OPPORTUNITIES TO ASK QUESTIONS USING THE EXISTING DATA, AND THIS WILL ALSO HELP US CURTAIL THE NEED TO CONTINUALLY EP GAUGE ENGAGE INDIVIDUALS TO PARTICIPATE IN STUDIES. SO IN THE FUTURE, THE GDC WILL BE OFFERING CUTTING EDGE BIOINFORMATIC TOOLS ASSOCIATED WITH THIS RESOURCE, RESEARCHERS WILL BE ABLE TO COMPARE THEIR DATA WITH OTHER DATASETS, THEY'LL BE ABLE TO USE CLOUD COMPUTING CAPABILITIES, AND THIS ALSO WILL HELP WITH ENABLING US TO ASSURE THAT OWNERSHIP IS RESPECTED WHILE SHARING IS STILL POSSIBLE. JUST TO GIVE YOU A LITTLE BIT OF A SENSE OF THE SCALE OF THIS, THE GDC WAS LAUNCHED LAST YEAR WITH 14,000 CASES. THERE WERE 14,000 CASES FROM THE TCGA STUDY AS WELL AS THE TARGET STUDY. ANOTHER 18,000 ARE BEING PROVIDED BY FOUNDATION MEDICINE, AND THERE ARE ANOTHER 25,000 OR SO THAT ARE PLANNED TO BE ENTERED WITHIN THE NEXT COUPLE OF YEARS, AND I'M SURE THAT THERE WILL BE MORE THAT WILL BE ADDED AS WELL. AGAIN, PROVIDING FOR A DATABASE THAT CAN BE EXPANDED OVER TIME. SO THE VISION FOR THE NCI IS TO CREATE A CANCER RESEARCH DATA ECOSYSTEM, AND THE VISION BEHIND THIS IS WE WOULD HAVE MULTIPLE DATASETS FOR MULTIPLE DIFFERENT -- AND MULTIPLE DIFFERENT TYPES OF DATA FROM DIFFERENT STUDIES THAT COULD ALL BE CROSS-COMPARED. BY RESEARCHERS, BY INSTITUTIONS, BY CLINICIANS, BY PATIENTS, WE WOULD HAVE SYSTEMS THAT ARE INTEROPERABLE THAT WOULD MAKE THIS A VERY SEAMLESS ENTERPRISE SO THAT IF PEOPLE WERE INTERESTED IN ASKING QUESTIONS OF THIS DATA, THEY COULD PULL IT DOWN OR ACCESS IT IN THE CLOUD AND ASK THEIR SCIENTIFIC QUESTIONS. AND IN THE SPIRIT OF IT BEING A VERY DYNAMIC RESOURCE, PEOPLE WOULD ALSO BE ABLE TO ADD DATA INTO THE SYSTEM. SO THAT IT COULD CONTINUALLY BE -- THE DATA COULD CONTINUALLY EXPAND AND BE LEVERAGED BY EVERYONE. LAST YEAR ABOUT THIS TIME, WE LAUNCHED AN EFFORT CALLED THE EARLY ONSET MALIGNANCIES INITIATIVE, SO THIS IS A STUDY THAT IS VERY FOCUSED ON TRYING TO UNDERSTAND THE BASIS FOR THE INCREASES THAT ARE BEING SEEN IN EARLY ONSET CANCER, SO THIS IS PEOPLE WHO ARE BEGINNING TO DEVELOP CANCER AT EARLIER AGES. THIS HAS BEEN REPORTED FOR A NUMBER OF DEMOGRAPHIC GROUPS. WE ARE DOING THIS IN COLLABORATION WITH THE MINORITY SERVING NCORP SITES, THE NATIONAL COMMUNITY ONCOLOGY RESEARCH PROGRAMS ACROSS THE NATION. I THINK WE'VE GOT 12 MINORITY SERVING SITES THAT WE'RE WORKING WITH. AND THIS WAS BROUGHT TO OUR ATTENTION AT A MEETING THAT WE HELD WITH INVESTIGATORS WHO ARE INTERESTED IN HEALTH DISPARITIES AND IN TRYING TO UNDERSTAND THE GENETIC BASIS FOR DISEASE. SO WHAT WE'RE DOING IS WE'VE TAPPED THESE SITES TO HELP US COLLECT SAMPLES FROM INDIVIDUALS DIAGNOSED WITH CANCER AT AN EARLY AGE, WE'RE COLLECTING THEM FROM A NUMBER OF DIFFERENT POPULATION GROUPS. WE WILL BE CHARACTERIZING THE SAMPLES AT THE MOLECULAR LEVEL AND COLLECTING INFORMATION FROM THE INDIVIDUALS ALSO ABOUT SOME OF THEIR CLINICAL BACKGROUND AS WELL AS EXPOSURES. AND WE WILL ALSO BE DEVELOPING A TISSUE BANK. SO THE SAMPLES THAT WE WILL BE COLLECTING, WE'RE GOING TO START WITH BREAST, COLORECTAL, LIVER, MULTIPLE MYELOMA, PROSTATE AND RENAL, ORCID KNEE. OR KIDNEY. THE AGE CUTOFFS ARE TYPICALLY BELOW THE AGE WHERE ONE WOULD BEGIN TO BE SCREENED FOR THESE DISEASES. AND WE'LL BE LOOKING IN AFRICAN-AMERICAN, CAUCASIAN, HISPANIC AND NATIVE AMERICAN POPULATIONS. SO WE'VE MADE A LOT OF ADVANCES IN THE AREA OF GENOMICS AND WE HOPE WITH THIS EARLY ONSET STUDY WE'LL BE ABLE TO LEARN EVEN MORE ESPECIALLY ABOUT EARLY ONSET DISEASE, BUT WE CAN DO A LOT MORE. WE CAN DETERMINE WHAT GENETIC FACTORS ARE PLAYIN A ROLE IN CANCER, AND WE CAN UNDERSTAND WHAT MIGHT BE SIMILAR OR DIFFERENT AMONG DIFFERENT POPULATIONS, AND WE CAN ALSO BEGIN TO UNDERSTAND HOW THE GENES ARE INFLUENCED BY LIFESTYLE AND EXPOSURES. IN ORDER TO DO THIS, WE NEED BIOSPECIMENS WITH COMPREHENSIVE CHARACTERIZATION, INCLUDING DNA SEQUENCING, RNA EXPRESSION, PROTEIN EXPRESSION AND OTHER TYPES OF ANALYSIS TYPICALLY REFERRED TO AS OMICS BY MANY OF US. SO BIOSPECIMENS WILL BE CRITICAL FOR ALSO ADVANCING CANCER RESEARCH IN THE AI/AN POPULATIONS, SO WHEN WE TALK ABOUT THE BIOSPECIMENS THAT WILL BE NEEDED FOR SOME OF THESE GENOMIC TYPES OF STUDIES AND PRECISION MEDICINE STUDIES THAT I'LL BE TALKING ABOUT A LITTLE MORE, WE'RE TALKING ABOUT COLLECTING SAMPLES SUCH AS TISSUE OR BLOOD FROM INDIVIDUALS DIAGNOSED WITH CANCER, OF COURSE ASSOCIATED WITH INFORMED CONSENT. WE'LL NEED TO BE COLLECTING INFORMATION ABOUT INDIVIDUALS, SO CLINICAL DATA, EXPOSURE DATA, FAMILY HISTORY, AND SO WHY IS THIS IMPORTANT? IT'S IMPORTANT BECAUSE THESE OMICS TECHNOLOGIES ENABLE RESEARCHERS TO UNDERSTAND THE SAMPLE AT THE MOLECULAR LEVEL, AND UNDERSTANDING THE SAMPLE AT THE MOLECULAR LEVEL CAN INFORM INDIVIDUAL TREATMENT DECISIONS, IT CAN ADVANCE OUR KNOWLEDGE ABOUT CANCER AND IT CAN ALSO CONTRIBUTE TO RISK ASSESSMENT AT A POPULATION LEVEL. ALL OF THE DATA THAT IS COLLECTED IS SECURELY STORED, CAN BE SHARED WITH THE RESEARCH COMMUNITY. THERE ARE MANY GUIDELINES IN PLACE FOR THE SHARING AND CAN BE INTEGRATED WITH OTHER DATA TYPES AND USED IN FUTURE STUDIES. SO PRECISION MEDICINE IS BUILT ON THE FOUNDATION OF CANCER GENOMICS. AND AS WE DEFINE PRECISION MEDICINE, IT'S THE INTERVENTIONS TO PREVENT, DIAGNOSE OR TREAT CANCER, BASED ON MOLECULAR AND OUR MECHANISTIC UNDERSTANDING OF THE CAUSES, PATHOGENESIS, AND/OR THE PATHOLOGY OF THE DISEASE. WHERE THE INDIVIDUAL CHARACTERISTICS OF THE PATIENT ARE SUFFICIENTLY DISTINCT, INTERVENTIONS CAN BE CONCENTRATED ON THOSE WHO WILL BENEFIT, SPARING EXPENSE AND SIDE EFFECTS OF THOSE WHO WILL NOT. AND SO THE NCI LAUNCHED THE MATCH TRIAL ABOUT A YEAR AND A HALF AGO, SO THE MATCH TRIAL IS REALLY -- SITS ON THE SHOULDERS OF PRECISION MEDICINE AS A PARADIGM. SO INSTEAD OF ACCRUES PATIENTS OR INVITING PEOPLE TO PARTICIPATE ON THE TRIAL BASED ON THE TYPE OF CANCER THAT THEY HAVE, THEY'RE INVITED TO PARTICIPATE BASED ON THE FACT THAT THEY HAVE CANCER. WHAT HAPPENS THEN IS THAT THEIR TUMOR IS ACTUALLY A PIECE OF THE TUMOR IS TAI KEP TAKEN AND IT'S SEQUENCED TO SEE WHAT GENETIC ABNORMALITIES ARE PRESENT IN THE TUMOR, AND BASED ON THE GENETIC ABNORMALITIES PRESENT, A TREATMENT, IF AVAILABLE, IS IDENTIFIED THEN THAT CAN BE PAIRED WITH THAT PATIENT. SO THE IDEA IS TO GIVE THE PATIENT THE TREATMENT THEY NEED BASED ON THE MUTATIONS PRESENT IN THE CANCER ITSELF. SO THERE'S A LONG LIST OF THINGS THAT THE PRECISION MEDICINE WILL ENABLE US TO DO. I'M JUST SHOWING YOU A PARTIAL LIST AND I WON'T EVEN READ EACH OF THESE IN DETAIL, BUT JUST TO GIVE YOU A COUPLE OF EXAMPLES, ONE THING IT WILL DO IS IT WILL EP ENABLE US TO IDENTIFY NEW MUTATIONS THAT WE CAN USE TO IDENTIFY OR TO DEVELOP NEW TARGETED THERAPIES AGAINST THOSE NEWLY IDENTIFIED MUTATIONS. THE OTHER THING IT SHOULD ENABLE US TO DO IS TO BE SMARTER ABOUT THE THERAPIES BASED ON THE CHARACTERISTICS OF THAT I TUMORS. SO CLINICIANS KNOW THAT IT'S VERY UNLIKELY THAT WE WILL FIND A SINGLE AGENT THAT WILL BE SUCCESSFUL IN TREATING AN INDIVIDUAL WITH CANCER. TYPICALLY CANCERS TEND TO DEVELOP RESISTANCE AND PEOPLE TEND TO RELAPSE. AND SO WE'LL NEED TO BE SMART ABOUT MAKING COMBINATIONS OF DIFFERENT THERAPIES IN ORDER TO BE MORE SUCCESSFUL AT TREATMENTS, SO THESE COMBINATIONS MIGHT INCLUDE MOLECULARLY TARGETED THERAPIES SUCH AS SMALL MOLECULES OR IMMUNOTHERAPIES, MIGHT ALSO INVOLVE RADIATION OR CLASSICAL CHEMOTHERAPY AS WELL. SO THIS WILL BE A HIGH PRIORITY AREA FOR THE NCI IN THE YEARS TO COME. LESHING HOWLEARNING HOW TO PUT TOGETHER COMBINATIONS OVER TWO OR THREE AGENTS THAT CAN TREAT THE CANCER. SO LAST NOVEMBER, THE OKLAHOMA UNIVERSITY HEALTH SCIENCES CENTER HOSTED A MEETING ON PRECISION MEDICINE IN THE AI/AN COMMUNITIES. IT WAS A VERY WELL ATTENDED MEETING BY A NUMBER OF DIFFERENT TRIBAL NATIONS AND FOLKS FROM THE OKLAHOMA AREA. I FOUND THIS MEETING TO BE VERY INTERESTING AND ACTUALLY HAVE A COUPLE OF SLIDES THAT I'D LIKE TO SHARE WITH YOU FROM THE MEETING. THE FIRST COUPLE OF SLIDES ARE FROM DENISE DILLARD WHO SITS ON YOUR COMMITTEE HERE, SO I'M NOT GOING TO CLAIM TO BE THE EXPERT, SHE IS, BUT SHE SHARED A COUPLE OF STORIES ABOUT THE RESEARCH THAT THEY'RE DOING IN ALASKA, AND I THOUGHT THIS WAS PARTICULARLY INTERESTING AND THOUGHT IT WAS WORTH SHARING AS AN APPROACH. SO SHE TALKED ABOUT A STUDY THAT THEY'RE DOING WITH TAMOXIFEN, AND THE STUDY THAT THEY'RE DOING IS TO LOOK AT AND DETERMINE WHETHER GENETIC VARIANTS EXIST IN THE POPULATION THAT MIGHT REDUCE EFFECTIVENESS OF THE MEDICINE OR BE ASSOCIATED WITH NEGATIVE SIDE EFFECTS. AND WHEN SHE WAS TELLING ABOUT THE STORY AND ABOUT DOING THIS RESEARCH, SHE EXPLAINED TO US THAT THIS WAS NOT THE BEGINNING BUT THIS WAS ACTUALLY THE RESULT OF MANY YEARS OF INVESTMENT IN THE COMMUNITY AND BUILDING CAPACITY, BOTH BUILDING RELATIONSHIPS WITH THE COMMUNITY AS WELL AS BUILDING INFRASTRUCTURE WITH THE COMMUNITY SO AMONG THE THINGS THEY DID PRIOR TO LAUNCHING THE STUDY INCLUDING WHAT WAS IMPORTANT TO THE COMMUNITY, DEVELOPING GUIDELINES, DEVELOPING A BIOBANK, ASSESSING THE TRUSTWORTHINESS OF RESEARCHERS AND LEARNING ABOUT THE PERCEPTIONS OF PHARMACOGENETICS AMONG THE ALASKA NATIVE PEOPLE. SO I THOUGHT THIS WAS A VERY COMPELLING EXAMPLE OF COMMUNITY-BASED PARTICIPATORY RESEARCH AND A WAY THAT ALASKA, AT LEAST, HAS BEEN MOVING FORWARD IN THE AREA OF PRECISION MEDICINE TO DO IT IN A PARTNERSHIP FORM. THE OTHER EXAMPLE THAT WAS SHARED AT THE MEETING THAT I THOUGHT WAS INTERESTING WAS A STORY THAT WAS SHARED BY DR. CHERYL WILLMAN, WHO IS THE DIRECTOR AT THE UNIVERSITY OF NEW MEXICO COMPREHENSIVE CANCER CENTER. SHE PRESENTED A NUMBER OF DIFFERENT STUDIES BUT ONE OF THE STUDIES THAT SHE PRESENTED WAS A STORY ABOUT ACUTE LYMPHOBLASTIC LEUKEMIA. THIS IS A CANCER THAT OCCURS IN CHILDREN, AND SHE EXPLAINED THAT HISPANIC CHILDREN HAVE THE HIGHEST INCIDENCE OF THIS CHILDHOOD LEUKEMIA. SHE ALSO EXPLAINED THAT AMERICAN INDIAN CHILDREN, WHILE THEY HAVE A LOWER INCIDENCE OF THIS CANCER, THEY TEND TO HAVE MUCH POORER OUTCOMES. AND SO SHE WAS INVOLVED IN THE STUDY WITH OTHER RESEARCHERS ACROSS THE COUNTRY THAT ACTUALLY STUDIED THE CHILDREN WHO DID NOT RESPOND TO TRADITIONAL THERAPY. OVER THE COURSE OF THEIR STUDY, THEY EVALUATED GENETIC AN ANCESTRY BY LOOKING AT ASSOCIATED DNA MARKERS OF THE CHILDREN. WHAT THEY LEARNED WAS THAT THERE WAS A STRONG ASSOCIATION BETWEEN THE DEGREE OF NATIVE AMERICAN ANCESTRY AND THE POORER OUTCOMES. SO JUST TO SHOW YOU A DATA SLIDE THE PAPER, IF YOU LOOK AT THIS PANEL, PANEL B, THIS UPPER LINE, IT'S BLUE, IT MIGHT BE HARD TO TELL THAT IT'S BLUE, BUT THESE ARE CHILDREN WHO HAD GREATER THAN OR EQUAL TO 10% OF NATIVE AMERICAN ANCESTRY, AND THE RED LINE BELOW IT IS LESS THAN 10% NATIVE AMERICAN ANCESTRY. AND IF YOU LOOK, THIS AXIS IS THE PROBABILITY OF RELAPSE. SO YOU CAN SEE THOSE INDIVIDUALS WITH GREATER THAN OR EQUAL TO 10% OF NATIVE AMERICAN ANCESTRY HAD A HIGHER CHANCE OF RELAPSE. SO THROUGH THEIR STUDY, WHAT THEY LEARNED IN THE END WAS THAT IF THEY WERE TO TREAT THE INDIVIDUALS WITH THE HIGHER PERCENTAGE OF NATIVE AMERICAN ANCESTRY WITH ONE ADDITIONAL CYCLE OF CHEMOTHERAPY, THAT THEY COULD ACTUALLY REDUCE THE CHANCE OF RELAPSE DOWN TO -- SIMILAR TO THAT OF THE OTHER GROUP. SO THIS WAS I THOUGHT A REALLY GREAT EXAMPLE OF HOW ANCESTRY AND ASSOCIATED GENETIC BACKGROUND CAN PLAY AN IMPORTANT ROLE IN MAKING TREATMENT DECISIONS AND HOW YOU GO ABOUT TREATING KIDS WITH THIS CANCER. THERE ARE CERTAINLY OTHER EXAMPLES OF THIS, OF HOW THE GENETIC BACKGROUND CAN INFLUENCE RISK. SO JUST TO SUMMARIZE, PRECISION MEDICINE AND ONCOLOGY IS FOCUSED ON IDENTIFYING INDIVIDUAL CHARACTERISTICS OF PATIENTS AND THEIR TUMORS. DISPARITIES IN CANCER INCIDENCE AND MORTALITY CAN RESULT FROM MANY FACTORS. I FOCUS MOSTLY ON GENETICS TODAY. ANCESTRY MARKER ARE AN IMPORTANT TOOL FOR RESEARCH, AND WE MUST CONTINUE CONDUCTING BASIC RESEARCH TO IMPROVE OUR ABILITY TO TREAT, DIAGNOSE AND PREVENT CANCER FOR ALL POPULATIONS. FOR THOSE WHO MIGHT NOT BE AWARE, I JUST WANTED TO MENTION THAT THERE IS A WORLD CANCER CONTROL MEETING, CHALLENGES AND OPPORTUNITIES, BEING HELD IN EARLY MAY. THIS IS BEING HOSTED BY THE UNIVERSITY OF MEMPHIS. I REALIZE NOW THAT IT MIGHT BE HARD TO SEE THE URL, BUT IF YOU'RE INTERESTED, WE CAN CERTAINLY GET YOU MORE INFORMATION. SO JUST AS A LAST SLIDE, I JUST THOUGHT I'D PUT UP A QUESTION IN CASE YOU DIDN'T HAVE QUESTIONS FOR ME, BUT CERTAINLY IF YOU DO, I'M MORE THAN WILLING TO ENTERTAIN THEM. I ALSO WOULD LIKE TO INTRODUCE WARREN KIBBE WHO'S HERE, HE'S THE HEAD OF OUR INFORMATICS AND COMPUTING RESOURCES AND PART OF -- HELPED TO CREATE THE VISION FOR THE GENOMIC DATA COMMONS AND THE DATA ECOSYSTEM. SO HE CAN HELP ANSWER QUESTIONS IN THAT ARENA AS WELL. >> THANK YOU SO MUCH FOR YOUR PRESENTATION. JUST A COUPLE OF ITEMS IN TERMS OF FOOD FOR THOUGHT AS YOU FOLKS DEVELOP SOME OF YOUR STRATEGIC THINKING ON THIS FRONT. I DID KIND OF HAVE A QUESTION ABOUT HOW SOME OF THESE PARTICULAR CANCERS BECAME A PRIORITY. I THINK IT'S ON PAGE 9 IN OUR SLIDE 17. IN PARTICULAR, I WAS WONDERING ABOUT OTHER REPRODUCTIVE CANCERS. YOU'VE GOT PROSTATE ON THERE, BUT OVARIAN, I THINK IS A HUGE AREA THAT'S UNDERRESEARCHED, AND WE'RE REALLY LACKING PARTICULARLY FOR NATIVE WOMEN. I HAVE A PARTICULAR BELIEF AND HAVE TALKED TO SOME OTHER FOLKS ABOUT JUST HOW STRESS MANIFESTS IN OUR BODIES AND THE ROLE OF HISTORICAL TRAUMA OVER TIME ON OUR REPRODUCTION, SO I JUST ALWAYS LIKE TO INFUSE THAT WHERE POSSIBLE. BUT ALSO THIS QUESTION ABOUT COMMUNITIES BEING WILLING TO PARTICIPATE IN EFFORTS TO INCREASE GENOMIC UNDERSTANDING OF CANCER. I DON'T KNOW ENOUGH ABOUT GENOMIC SCIENCE, BUT I KNOW THAT A CONVERSATION ABOUT CO-OCCURRING CONDITIONS HAS REALLY HAD SOME TRACTION AMONGST SOME TRIBAL EPI STAFF THAT WE'VE CONVENED OVER TWO YEARS AND LOOKING AT THE INTERSECTION BETWEEN CANCER AND DIABETES, FOR INSTANCE, OR CANCER, MENTAL HEALTH, DEPRESSION, DIFFERENT ASPECTS, AND SO FOR SOME OF THE COMMUNITIES THAT I WORK IN, THE ABILITY TO UNDERSTAND MORE ABOUT HOW GENOMIC TOOLS COULD HELP US GET AT SOME OF THESE CO-OCCURRING CONDITIONS AND HOW THEY PRESENT AND ALSO TO GET TO SOME TREATMENTS WOULD BE REALLY CRITICAL LASTLY IN MY MIND, A BIG QUESTION IN RELATION TO THIS IS, WHAT IS THE ROLE OF INDUSTRY, AND HOW DO WE AS TRIBAL NATIONS AND ONE SET OF STAKEHOLDERS THINK ABOUT BEING AT THE TABLE WITH NIH IN RELATION TO WHO FUNDS AND WHO BENEFITS FROM THE RESEARCH, THE CONVERSATION ABOUT BENEFIT AND RISK HAS BEEN REALLY CONSISTENT THE LAST TWO DAYS, AND I THINK WITH THIS BODY, SO YOUR ABILITY TO HELP US KIND OF SPEAK TO THE BENEFITS AND THE RISKS FOR AMERICAN INDIANS AND ALASKA NATIVES FOR THIS RESEARCH WOULD REALLY HELP, I THINK, ANSWER THAT AND GENERATE MORE MEANINGFUL PARTICIPATION. >> THANK YOU VERY MUCH FOR THOSE COMMENTS. APPRECIATE IT. 10 DIFFERENT PLACES THAT WE CAN APPLY THAT $1.8 BILLION OVER THE NEXT SEVEN YEARS. AND WHILE THERE'S -- AGAIN, THERE'S A TREMENDOUS AMOUNT OF NEED OUT THERE, IN UNDERSTANDING DIFFERENT PARTS OF BIOLOGY, UNDERSTANDING THE IMPACT IN DIFFERENT POPULATIONS, AND PART OF THAT IS HOW CAN WE DO A BETTER JOB OF MANAGING THE DATA AND MANAGING THE INVESTMENTS WE'RE ALREADY MAKING. SO THAT'S GOING TO BE ONE OF OUR FOCAL POINTS FOR THE NEXT TWO YEARS, IS, IN FACT, HOW DO WE MANAGE THE DATA THAT WE'RE ASKING PEOPLE TO CONTRIBUTE TO US AND MAKE THAT AS ACCESSIBLE TO THE CANCER RESEARCH COMMUNITY AS WE CAN. SO I DON'T KNOW IF YOU HAVE A FOLLOW-UP QUESTION FOR THAT THAT I CAN HELP WITH? >> THANK YOU, THANK YOU FOR PROVIDING THAT INSIGHT. I GUESS I FEEL LIKE WE HAD A CONVERSATION, A CONSULTATION WITH INTERIOR ABOUT A MONTH AGO, AND IT WAS REGARDING THE WIN ACT, WHICH BASICALLY IS THE INTERIOR AND -- WAS ABLE TO GET SOME MONEY FOR SAFETY OF DAMS FOR TRIBES PLUS IRRIGATION DOLLARS, AND THERE WAS A NUMBER OF OTHER AUTHORIZATIONS THAT WERE MADE, AND THOSE AUTHORIZATIONS WERE MADE FOR, I THINK, THE NEXT THREE OR FIVE YEARS, BUT YET AGAIN, IT'S LIKE MONEYS ARE AUTHORIZED BUT WE STILL HAVE TO GO BACK AND LOBBY FOR THE FUNDS FOR EACH YEAR, SO I THINK IF THERE'S WAYS THAT WE CAN HELP, THIS BODY IS BASICALLY A POLITICAL BODY HERE, BUT AT THE SAME TIME, I MEAN, IF I -- I WOULD BE MORE THAN HAPPY TO GO TO BAT FOR YOU AND ADVOCATE FOR FUNDING, LOBBY FOR FUNDING, BUT I WOULD -- AT THE SAME TIME, WOULD WANT YOUR EFFORTS TO HAVE THAT REP 16 TAITION REPRESENTATION IN TRIB AL COMMUNITIES. SO THAT'S THE ASSURANCE, HOW CAN WE GET THAT ASSURANCE FROM NCI OR OTHER AGENCIES THAT YOU'RE WORKING WITH, HOW CAN WE GET THAT ASSURANCE THAT SOME OF THIS WILL TRICKLE OVER INTO INDIAN COUNTRY? >> FIRST WE CAN'T REALLY TALK ABOUT LOBBYING EFFORTS UNFORTUNATELY, THAT'S UP TO YOU GUYS. AND WE REALLY DO APPRECIATE EVERYTHING THAT YOU DO DO. THE OTHER SIDE OF IT, THOUGH, IS LOOKING AT THE -- WE REALLY WANT TO HAVE BETTER INTERACTION WITH THE NATIVE POPULATIONS AND MANY UNDERSERVED MINORITIES. THAT'S SOMETHING WE'RE REALLY FOCUSED ON THAT CAME OUT OF THE BLUE RIBBON PANEL AGAIN. HOW DO WE REMOVE HEALTH DISPARITIES. AND DISPARITIES TAKE SO MANY DIFFERENT FORMS. SOME OF THEM ARE ACCESS TO CARE, SOME OF THEM ARE NOT UNDERSTANDING, IN FACT, THE BASIC BIOLOGY OF DIFFERENT GROUPS, AND EVERYTHING IN BETWEEN. SO NCI REALLY DOES WANT TO BE A GREAT PARTNER IN THIS, AND WE'RE LOOKING FORWARD TO BEING THAT PARTNER. IT'S UNCOMFORTABLE FOR US TO MAKE COMMITMENTS WHEN RIGHT NOW WE CAN'T. BUT I GUESS I'LL SAY WE WANT TO BE THERE. AND WE WANT TO MAKE SURE THAT, IN FACT, WE HAVE BETTER ENGAGEMENT, AS MICHELLE MENTIONED, WE WERE OUT, DR. LOWY WAS IN -- >> OKLAHOMA. >> WAS IT OKLAHOMA? YES, OKLAHOMA BACK IN THE FALL, AND WE REALLY DO WANT TO HAVE BETTER ENGAGEMENT ACROSS THE WHOLE COUNTRY WITH DIFFERENT POPULATIONS. >> MY NAME IS ALLISON FROM THE -- CON FEDERATED TRIBES IN WASHINGTON STATE, AND IT WAS INTERESTING TO FIND OUT THAT ARSENIC IS ONE OF THE RISK FACTORS FOR CANCER. IN OUR COMMUNITY, WE'RE A SMALL COMMUNITY, WE PROBABLY HAVE ABOUT FOUR TO 5,000 PEOPLE LIVING WITHIN OUR RESERVATION BOUNDARIES. WE HAVE PROBABLY APPROXIMATELY ABOUT 10,000 MEMBERS. BUT I SEE HIGH RATES OF TRIBAL MEMBERS BEING DIAGNOSED WITH CANCER, AND SO NORTHWEST PORTLAND AREA AND HEALTH BOARD, I DO BELIEVE THEY HAVE A CANCER REGISTRY, SO I CONTACTED THEM TO SEE IF THERE WERE JUST HIGHER RATES OF CANCER BEING REPORTED IN OUR AREA, AND THEY SAID PROBABLY NOT ANY DIFFERENT THAN OTHER TRIBAL MEMBERS, BUT IT WOULD BE INTERESTING, WHEN YOU POSE THIS QUESTION, TO -- YOU KNOW, I PLAN TO GO BACK AND SEE IF -- I DON'T KNOW IF YOU HAVE ACCESS TO THE CANCER REGISTRY WITH THE NATIVES BECAUSE I THINK OUR PARTICULAR TRIBE IS INTERESTED, WE HAVE INDIAN HEALTH SERVICE REPORTS HIGH LEVELS OF ARSENIC IN THE WELLS, AND WHEN YOU LOOK AT THE WATER, IT IS JUST -- IT'S CRAZY AND IT STINKS, YOU KNOW? WE HAVE A WHOLE COMMUNITY THAT THAT'S WHAT THEIR WATER IS LIKE. SO WHEN YOU POSE THAT QUESTION, I DEFINITELY -- I CAN'T SPEAK FOR THE TRIBE, I CAN'T SPEAK FOR THE NORTHWEST PORTLAND AREA HEALTH BOARD, BUT I THINK IF THEY SAW A PRESENTATION LIKE THIS, THAT IT WOULD DEFINITELY BE -- THE TRIBAL MEMBERS WOULD BE WILLING TO FIGURE OUT HOW WE COULD PARTICIPATE. SO I THINK IT WOULD BE GOOD. >> THANK YOU, THAT'S GREAT TO KNOW. WE DEFINITELY HAVE ACCESS TO THE CANCER REGISTRIES AND WE COULD DEFINITELY GO BACK AND TAKE A LOOK AND EXPLORE YOUR QUESTION A LITTLE FURTHER AND THEN GET BACK TO YOU WITH ANY THOUGHTS THAT WE HAVE. >> BECAUSE I SEE THAT WHEN YOU -- THE FIRST -- WHEN YOU -- WERE THOSE AMERICAN ALASKA NATIVE IN THE DIAGNOSED GROUP, FROM THAT GROUP, WERE THEY LIKE THE THIRD LARGEST OR FOURTH LARGEST GROUP THAT WERE -- WAS THAT DIAGNOSED WITH CANCER? I WAS TRYING TO FIGURE OUT THE SLIDE. >> ON THE FIRST SLIDE THAT I SHOWED? >> YEAH, THE -- >> SO THOSE ARE THE INCIDENCE RATES FOR ALL CANCERS FOR BOTH SEXES OVER TIME. THE AI/AN POPULATIONS SIT SORT OF IN THE MIDDLE. >> THEY'RE LIKE THE THIRD -- AS YOU LOOK AT IT, IT'S REALLY DIFFICULT TO LOOK AT OUR -- >> IT'S HARD TO SEE? >> YEAH, I WAS TRYING TO FIGURE THAT OUT. BECAUSE THIS WOULD BE SOMETHING I WOULD TAKE BACK AND KIND OF SHOW OUR TRIBAL LEADERS AND -- >> I'D BE HAPPY TO PROVIDE YOU WITH ANY SORT OF RESOURCES THAT WOULD BE HELPFUL IF YOU WANTED TO GO BACK SO WE CAN GIVE YOU LARGER GRAPHS, FOR EXAMPLE, AND HELP ARTICULATE THE DIFFERENCES. SO IF THERE'S A WAY THAT I CAN MAKE SURE YOU HAVE MY EMAIL ADDRESS, WE CAN CORRESPOND. >> GREAT. >> SURE. ABSOLUTELY. >> THANK YOU. >> -- FROM THE OKLAHOMA AREA. WHEN I LOOK AT THAT QUESTION, I READ IT A COUPLE DIFFERENT WAYS. ONE OF THEM IS, OUR AMERICAN INDIAN ALASKA NATIVE COMMUNITIES, ARE THEY WILLING TO LEARN MORE ABOUT GENOMIC RESEARCH AND WHAT THAT MIGHT MEAN, AND THE BENEFITS AND THE RISKS I THINK MALIA ADDRESSED EARLIER ON, SO ARE WE WILLING TO BE EDUCATED, AT LEAST FOR THE OKLAHOMA AREA, I WAS AT THAT NCI CONFERENCE THERE. I WOULD SAY, YEAH, THE ANSWER IS YES, THAT WE'RE WILLING TO LEARN MORE ABOUT IT. THE OTHER WAY I READ IT, ARE WE READY TO COMMIT TODONATING SAMPLES AND THINGS LIKE THAT? I WOULD INTEREST V. TO HAVE TO SAY FOR THE OKLAHOMA AREA IN GENERAL, I WOULD HAVE TO SAY NO, THERE'S NOT ENOUGH KNOWLEDGE, NOT ENOUGH CLARITY ON SOME OF THE ISSUES TO ACTUALLY COMMIT TO DOING THAT. I KNOW THAT SOME OF THE TRIBES I WORK WITH IN OKLAHOMA HAVE ALREADY ENGAGED IN SOME GENOMIC RESEARCH SO THEY'RE OBVIOUSLY WILLING TO DO THAT. OTHER TRIBES HAVE SAID NO, WE ARE NOT READY AT ALL. SO I THINK THAT THERE'S WILLINGNESS TO BE EDUCATED ON WHAT THIS MEANS EXACTLY, WHAT ARE THE BENEFITS, WHAT ARE THE RISK, BUT YOU KNOW, WHEN I LOOK AT THAT QUESTION, I READ IT BOTH WAYS. SO I THINK THAT THERE'S A REAL NEED FOR EDUCATION STILL ON WHAT DOES THIS PROJECT MEAN, WHAT DOES GENOMIC RESEARCH MEAN IN GENERAL. IF I RECALL CORRECTLY AT THAT MEETING, OF THE TRIBAL LEADERS THAT WERE THERE, FOR MANY OF THEM, THIS WAS THE FIRST TIME THEY HAD EVER HEARD OF PRECISION MEDICINE OR ANYTHING LIKE THIS. SO THEY WERE NOT NEGATIVE, IF I RECALL CORRECTLY, BUT THEY WERE -- YOU KNOW, THEY WERE INTERESTED, BUT THEY JUST DID NOT HAVE ENOUGH KNOWLEDGE YET. SO I THINK WE NEED TO DO QUITE A BIT MORE EDUCATION BEFORE I THINK TRIBES ARE WILLING TO COMMIT. >> THAT'S GREAT. THANK YOU VERY MUCH FOR YOUR ANSWER AND FOR SHARING THE TWO DIFFERENT PERSPECTIVES. I THINK YOU BRING UP MARVELOUS POINTS. THANK YOU. >> HI. MY NAME IS MARSHA. I'M WITH THE GREAT PLAINS TRIBAL HEALTH BOARD. SO MY EXPERIENCE HAS BEEN THAT TRIBES ARE MORE THAN WILLING TO LISTEN AND TO WORK WITH -- TOWARDS SOLUTIONS FOR BETTER HEALTH. AS FAR AS GENOMICS GOES, AGAIN, THEY'RE WILLING -- AGAIN, BASED ON MY EXPERIENCE, IT HAS BEEN -- THE OVERALL IS THAT THERE'S A PROCESS, THEY DON'T THINK IT'S JUST A GWAS STUDY OR JUST SOMETHING THAT'S GOING TO BE OUT THERE WITHOUT ANY KIND OF CHECKS AND CONTROLS. THERE IS A PROCESS THAT MOST TRIBES HAVE AND OTHER TRIBES ARE ADOPTING, AND AS LONG AS RESEARCHERS FOLLOW THAT, FOR THE MOST PART, THEY WANT GOOD HEALTH FOR OUR COMMUNITIES JUST LIKE EVERYBODY ELSE. SO I THINK THAT WHETHER IT'S GENOMICS OR BEHAVIORAL HEALTH OR REGARDLESS OF WHAT IT IS, I THINK TRIBES ARE OPEN TO THE DISCUSSION. THAT HAS BEEN MY EXPERIENCE. >> THANK YOU. >> I THINK -- I'M JOSH, DELEGATE FROM CALIFORNIA. I THINK ONE OF THE KEYS HERE IS WHAT YOUR DEFINITION OF "OUR" IS IS. I THINK IT PLAYS DIFFERENTLY DEPENDING ON WHO YOU TALK TO BECAUSE WHEN TRIBES ARE APPROACHED, MOTIVATIONS PLAY INTO HOW WELL WE RECEIVE INFORMATION REQUESTS AND THINGS LIKE THIS. THIS SOUNDS LIKE A PARTICIPATION REQUEST, BUT I THINK A LOT OF TRIBES AND TRIBAL REPRESENTATIVES WILL WANT TO KNOW THAT DEFINITION OF WHAT EXACTLY DOES "OUR" MEAN? DOES THAT MEAN NIC, DOES THAT MEAN NIH, DOES THAT MEAN BOTH NIC AND NIH AND TRIBES AND TRIBAL COMMUNITIES? DOES THAT MEAN THAT TRIBAL COMMUNITIES WILL BE THE ONLY ONES THAT WILL GAIN AN UNDERSTANDING AND HAVE THE OPTION OF GIVING THAT INFORMATION BACK TO NIH. SO IT GETS -- HOW YOU DEFINE "OUR" IS WHERE YOU GET, I THINK, COMPLICATIONS IN TERMS OF PARTICIPATION. >> THANK YOU. >> CAN I JUST ECHO THAT AND ALSO SAY IT ALSO DEPENDS ON WHAT YOU MEAN IN THE CONTEXT AND UNDERSTAND ABOUT PARTICIPATE. I WON'T GO INTO DETAIL BECAUSE I THINK WE'VE AGREED TO PROVIDE SOME MORE SPECIFICS BEFORE WE BRING THIS UP BUT JUST BEFORE THIS MEETING, THERE WAS A GROUP OF RESEARCHERS WHO CONTACTED A FEW OF US IN RELATION TO NCI FUNDING MECHANISM ABOUT DECISION TO NOT FUND A STUDY, AND IT WAS IN A PRIORITY AREA OF CANCER RESEARCH, AND THERE WAS SOME DISCUSSIONS FROM WHAT I UNDERSTAND ABOUT A PERCEPTION THAT NATIVE PEOPLE AREN'T WILLING TO PARTICIPATE IN CANCER RESEARCH, AND YET THERE WERE SEVERAL STUDIES CITED, PREVIOUS STUDIES ABOUT HOW STRONG THE PARTICIPATION WAS, I THINK YOUR STUDY, 211 PARTICIPANTS WAS CITED IN PARTICULAR, SO TRYING TO UNDERSTAND WHAT THE GENEALOGY OF PARTICIPATION HAS ALREADY LOOKED LIKE IN RELATION TO AMERICAN INDIAN ALASKA NATIVES IN CANCER CAN HELP INFORM OUR UNDERSTANDING ABOUT WHAT IT COULD LOOK LIKE GOING FORWARD. >> THANK YOU. >> I JUST WANTED TO ADD THAT -- SO THE TAMOXIFEN STUDY THAT SOUTH CENTRAL FOUNDATION PARTICIPATED IN, YOU KNOW, THERE WAS A LOT OF THE PREWORK THAT YOU CITED, BUT WE ALSO AGREED TO THAT RESEARCH UNDER CERTAIN STIPULATIONS WHICH IS THAT THE DATA AND THE SPECIMENS REMAIN UNDER THE CONTROL OF SOUTH CENTRAL FOUNDATION AND IF ONE OF THE REQUIREMENTS OF THE RESEARCH WAS TO CONTRIBUTE TO THE GENOMIC DATA WAREHOUSE THAT SCF WOULD ACTUALLY CHOOSE NOT TO PARTICIPATE BECAUSE THEY WOULD LIKE TO HAVE THE CONTROL OVER THE SPECIMENS, THE USE AND ALSO THE PUBLICATIONS COMING OUT OF THAT, SO THIS ALSO RELATES TO SOME DATA SHARING BUT I WANTED TO BE REALLY CLEAR THAT THAT RESEARCH WAS UNDERTAKEN WITH SOME PRETTY -- WITH A LOT OF TRIBAL OVERSIGHT IN PLACE. >> I REALLY APPRECIATE THAT. AGAIN, FROM BEING A PART OF NOW THE NCI FOR THE LAST THREE YEARS, ONE OF THE THINGS THAT I THINK WE REALLY ARE COMMITTED TO DOING JOINTLY WITH LOTS OF DIFFERENT GROUPS IS REALLY UNDERSTAND THE BURDEN OF CANCER AND HOW WE REDUCE THE BURDEN OF CANCER ACROSS THE COUNTRY FOR ALL GROUPS ACROSS THE GLOBE. AND AGAIN, FROM OUR PERSPECTIVE AND FRANKLY THE MISSION OF NCIs, HOW DO WE GENERATE SCIENTIFIC EVIDENCE THAT CAN BE TURNED INTO THE RIGHT POLICIES, INTO THE RIGHT KINDS OF INTERVENTIONS, THAT ALL PEOPLE NEED. SO AGAIN, I THINK THAT'S PART OF THE CHALLENGE HERE, IS WE WANT TO BALANCE THAT AND MAKE SURE THAT THAT'S AVAILABLE TO EVERYONE. AND WE WANT TO DO THAT FAIRLY AND WE WANT TO MAKE SURE THAT, IN FACT, WE'VE REACHED OUT TO THE NATIVE PEOPLE AS WELL. SO THE AI/AN COMMUNITY IS REALLY IMPORTANT, AND AGAIN, THERE'S OPPORTUNITIES FOR US, I THINK, TO DISCOVER THINGS ABOUT CANCER AND HOW TO INTERVENE THAT WE DON'T CURRENTLY KNOW. SO WE REALLY -- WE DO WANT THAT PARTNERSHIP. >> ALL RIGHT. THANK YOU BOTH VERY MUCH FOR YOUR TIME AND PRESENTATION TODAY. >> THANK YOU. [APPLAUSE] >> WE'RE NOT DOING TOO BAD, GUYS. WE'RE LIKE FIVE MINUTES BEHIND SCHEDULE HERE. I SHOW ON THE AGENDA LAST 15 MINUTES IS WRAP-UP, NEXT STEPS, RECOMMENDATIONS FOR NEXT MEETING DATES AND TOPICS. I'LL JUST, I GUESS -- I WASN'T IN ON THE MAKING OF THIS AGENDA SO I'M WINGING IT, BUT I WILL JUST SAY FOR WRAP-UP COMMENTS, AND MALIA, I CERTAINLY WILL DEFER TO YOU AS WELL, BUT I THINK WE HAD A GOOD MEETING THIS TIME. I LIKE THE NEW FOLKS AND THE NEW OLD FOLKS, LIKE MYSELF AND JACE BEING BACK HERE, AND WE'RE MOVING FORWARD. IT MAY NOT SEEM TO BE VERY FAST, BUT I THINK IT IS, ALL THINGS CONSIDERED, I THINK WE'RE DOING QUITE WELL, AND I WANT TO THANK DR. ANDERSON AND ALL OF THE STAFF AT NIH AS WELL FOR BEING SUCH WONDERFUL HOSTS AND LISTENING TO US SO WELL. SO WE THANK YOU AND I THINK WE OUGHT TO GIVE NIH A LITTLE ROUND HERE AS WELL. [APPLAUSE] WITH THAT, I THINK WE KIND OF TALKED ABOUT SOME OF THE NEXT STEPS AND RECOMMENDATIONS FOR THE NEXT MEETING DATES. WE HAVE TOPICS TOO, I THINK, AND WHAT I THOUGHT JUST TO GET THAT OUT OF THE WAY IS, I WILL TRY TO SYNTHESIZE SOME OF THE NEXT STEPS AND SOME OF THE TOPICS THAT WE TALKED ABOUT, AND I'LL SEND AN EMAIL OUT PROBABLY HERE IN THE NEXT -- MIGHT BE TONIGHT SINCE I DON'T HAVE ANY BIG PLANS, MY BASKETBALL GAME IS NOT HAPPENING. SO GET SOMETHING OUT THAT KIND OF SYNTHESIZES THAT. IF YOU HAVE ANYTHING THAT YOU THINK SHOULD BE A TOPIC, PLEASE FEEL FREE TO EMAIL MYSELF AND JACE, I'M GOING TO SPEAK FOR HIM SINCE HE'S NOT HERE, AND WE'LL DISCUSS THAT ON THE NEXT MEETING. AS FAR AS MEETING DATES, I KNOW WE HAD DISCUSSED SEPTEMBER FOR IN PERSON. OH, THERE'S KENDRA. SO CATCH ME UP ON DATES HERE. >> SO WE HAVEN'T NECESSARILY DISCUSSED SPECIFIC DATES AT THIS POINT. BUT WE HAVE BEEN TAGGING ALONG DURING THE SAME WEEK OF THE STAC MEETING, SO CURRENTLY THE STAC HAS PLANNED THEIR SEPTEMBER MEETING FOR THE 19TH AND THE 20TH. SO IF WE FOLLOW THE SAME FORMAT OF THEN DOING A THURSDAY-FRIDAY, THAT WOULD BE SEPTEMBER 21ST OR 22ND. NOW, SOME OF THE NATIONAL CONFERENCES LIKE NIHB IS NOT MEETING IN SEPTEMBER, LIKE IN THE PAST, SO THAT MIGHT FREE UP SOME OTHER WEEKS, LIKE THE WEEK OF SEPTEMBER 7TH OR THE WEEK OF SEPTEMBER 25TH. SO WE CAN CERTAINLY DO A POLL OR IF THERE ARE ANY DATES THAT YOU KNOW OF RIGHT NOW, LOOKING AT YOUR CALENDARS THAT DEFINITELY DON'T WORK, YOU CAN LET US KNOW SO THAT WE CAN TAKE ANY OF THOSE OFF THE TABLE. >> I WOULD PROBABLY SUGGEST MAYBE GO AHEAD AND DO A POLL FOR SURE. AND I CAN MAKE THE 21ST AND 22ND WORK, IF I DON'T HAVE TO, I WOULDN'T WANT TO BECAUSE I GET THAT FRIDAY AS A HOLIDAY, BUT I CERTAINLY WILL MAKE THE SACRIFICE. BUT I THINK IF WE CAN DO A POLL ON THOSE THREE WEEKS, THAT WOULD BE GREAT. BECAUSE IF IT'S MORE CONVENIENT FOR FOLKS ON STAC, I TOTALLY GET THAT. THAT'S NOT A PROBLEM AT ALL. SO WE'LL LOOK TO JUST HAVE A POLL ON THAT. I THINK THAT WILL BE FINE. >> SO DO WE WANT TO DO A POST-MEETING LETTER LIKE WE HAVE DONE IN THE PAST? I THINK WHAT WE TALKED ABOUT AT ONE PART OF THE DISCUSSION WAS WE TYPICALLY FOCUS THAT ON OUR PRIORITIES, DIRECTING IT TO DR. TABAK, DR. ANDERSON, JUST AS KIND OF OUR SUMMARY, BUT WHAT I ALSO HEARD THIS TIME AROUND WAS PERHAPS HAVING MORE SPECIFIC SUMMARY FROM SOME OF THE PRESENTATIONS WHERE THERE WASN'T ENOUGH TIME TO GET TO EVERYBODY'S COMMENTS OR WHERE WE FEEL LIKE WE HAVE A SET OF POTENTIAL RECOMMENDATION, INSIGHTS, TO BEGIN TO GIVE BACK TO SOME OF THESE INSTITUTES AND CENTERS. SO JUST A QUESTION OUT THERE, I'D BE HAPPY TO HELP CRAFT AND SHARE AND CIRCULATE, BUT JUST A THOUGHT BECAUSE THAT'S WHAT WE'VE DONE IN THE PAST. >> I'M IN FAVOR OF BEING CONSISTENT, AND THAT'S JUST -- I'M A BIG PROPONENT OF FOLLOW-UP, SO I THINK JUST FOLLOW-UPS SYNTHESIZING SOME OF THESE IDEAS WOULD BE FINE. IF YOU WANT TO HELP OUT WITH THAT AND I'LL HELP YOU, THAT WOULD BE GREAT. I WOULD LOVE THAT. AND THEN ONCE WE KIND OF AGREE, WE'LL FLOAT IT AROUND TO EVERYONE AND MAKE SURE THAT EVERYONE IS GOOD WITH THE INFORMATION THAT WE'RE PUTTING IN THERE FOR THE FOLLOW-UP LETTER. OKAY. ANYTHING ELSE? >> I HAVE A QUICK FOLLOW-UP QUESTION OR REQUEST. ONE OF THE THINGS THAT I INTEND ON DOING IS DISSEMINATING INFORMATION OUT TO STATE OF CALIFORNIA FOLKS. IS THERE A POSSIBILITY OF GETTING THIS ELECTRONICALLY? THE PRESENTATIONS ESPECIALLY? NOT THE WHOLE THING BUT MAYBE JUST THE PRESENTATIONS SO THAT I CAN GET THOSE OUT TO HEALTH PROFESSIONALS AND TRIBAL LEADERS IN CALIFORNIA? >> YES, ABSOLUTELY, WE CAN PUT THAT IN ELECTRONIC FORMAT. >> AND ACTUALLY THEY ARE POSTED ON THE WEBSITE, SO AS WE RECEIVE PRESENTATIONS THIS WEEK, WE WERE LOADING THEM ON TO THE WEBSITE, SO WE CAN SEND OUT THE LINK SO YOU CAN EASILY PASS THAT ALONG. AND THEY'LL SEAT AGENDA AND SEE THE AGENDA AND THE PRESENTATIONS ARE BUILT INTO IT. >> JUST MAKE A NOTE OF OF A COUPLE OF THE AGENDA ITEMS FOR NEXT TIME. I THINK PEOPLE WERE SUGGESTING AROUND OUR NEXT IN-PERSON MORE SO THAN TELECONFERENCE. A COUPLE THAT I NOTED WERE THE INDIGENOUS RESEARCH ETHICS, I'LL TAKE SOME RESPONSIBILITY AT CIRCULATING, SHARING WITH YOU FOLKS SO WE CAN CIRCULATE SOME OF THE DOCUMENTS THAT WE TALKED ABOUT. GENETICS, WE TALKED ABOUT HAVING MORE OF AN EXTENDED PERIOD OF TIME, AND THEN I DON'T KNOW WHERE WE'RE AT WITH SOME OF WHAT DR. TABAK RAISED TODAY ABOUT LESSONS LEARNED, WE KIND OF TALKED ABOUT IT AS CASE, BUT I JUST KIND OF WANT TO THROW THAT OUT THERE IN TERMS OF US IMINNING TO GENERATE SOME OF THESE PERHAPS LESSONS, I THINK -- I KNOW I'VE BEEN TRYING TO COLLECT ANY REPORTS FROM INVESTIGATORS THAT WE GET, WE PUT THAT CALL OUT A COUPLE TIMES AGO, SO THAT'S ONE SET, BUT JUST A THOUGHT. SO MAYBE STARTING TO GET SOME AGENDA ITEMS FOR NEXT TIME FLOATED. >> SO WE'RE VERY INTERESTED NOW THAT WE HAVE THIS COORDINATING COMMITTEE, IS TO GET THE INFORMATION FROM THE INDIVIDUAL INSTITUTES ABOUT THEIR INDIAN OFFICES, ABOUT THE PROGRAMS THAT THEY RUN THAT WE COULDN'T FIND, ABOUT THE LESSONS THAT THEY'VE LEARNED FROM THEIR PROGRAMS, AND I WAS HOPING THAT WE COULD BRING ONE OR TWO INSTITUTES HERE FOR EACH MEETING TO GIVE AN INSTITUTE-SPECIFIC OVERVIEW WHAT THEY DO, BUT WE'D ALSO ASK THEM TO SAY WHAT DID YOU LEARN FROM THESE PROGRAMS. DOES THAT SOUND LIKE SOMETHING WE COULD DO? >> ONE OTHER THOUGHT ON THAT FRONT, AND I DON'T WANT TO PUT MORE ON DAVE BECAUSE I KNOW YOU'VE GOT QUITE A HUGE PLATE HERE, BUT THE PORTFOLIO ANALYSIS I THOUGHT WAS PHENOMENAL FROM WHAT EVERYBODY HAD TO SAY, IT WAS A TRUST-BUILDING KIND OF AN EXERCISE YOU HEARD MR. ANTONE SAY THAT. THE POSSIBILITY FOR DAVE OR SOME VERSION TO SHARE THAT WITH INSTITUTES HERE TO BEGIN TO GENERATE SOME INPUT AROUND THAT OR IF THAT'S ALREADY BEING DONE, BUT JUST ANOTHER WAY TO THINK ABOUT THAT MAYBE. >> SO THAT'S ACTUALLY ONE OF THE ITEMS THAT WE'RE REQUESTING TO BE DEFINITELY DOING, IS FOLLOWING UP WITH THE COORDINATING COMMITTEE, AND ALSO ASKING THEM TO PROVIDE A LITTLE MORE DETAIL ON SOME OF THE PROGRAMS THAT WEREN'T DIRECTLY CAPTURED IN THE INITIAL ANALYSIS SO WE HAVE A MORE COMPREHENSIVE VIEW OF WHAT'S OUT THERE. ALSO ONE OF THE THINGS THAT I'D LIKE TO BRING UP IS THE CALL FOR NEXT TUESDAY, I KNOW IT'S RATHER QUICK TURNAROUND BUT I'D REALLY LIKE TO REVIS REVISIT THE ANNUAL CONSULTATION AND WHERE WE'D LIKE TO HAVE THAT TAKE PLACE, IN COORDINATION WITH WHICH MEETING, AND ALSO THE ITEMS FOR DISCUSSION FOR THAT CONSULTTION, WE'D REALLY LIKE TO START PREPLANNING FOR THAT AS SOON AS POSSIBLE. >> ANYONE ELSE HAVE ANYTHING WE MISSED, I MISSED? I DIDN'T TAKE THE GREATEST NOTES YESTERDAY BECAUSE I DIDN'T EXPECT TO BE IN THIS POSITION SO -- [LAUGHTER] ANY HELP YOU CAN GIVE ME WOULD BE WELCOME, I CAN ASSURE YOU. >> TRIBAL PROGRAMS IRB. WHEN I SEND THEM OUT, YOU WON'T HURT MY FEELINGS. I'M A TRIBAL LEADER, I DON'T KNOW IF I HAVE FEELINGS, SO YOU WILL NOT HURT MY FEELINGS IF I FORGOT SOMETHING AND YOU NEED TO LET ME KNOW. WITH THAT, MALIA, DR. ANDERSON, THEN DR. WILSON, IF YOU HAVE ANY CLOSING COMMENTS, PLEASE FEEL FREE TO DO THAT NOW. >> I DON'T THINK SO. >> THANK YOU TO EVERYONE, IT'S BEEN AN HONOR TO SERVE, AND I HOPE TO BE ABLE TO SERVE IN SIMILAR CAPACITY, I KIND OF SAID, YOU KNOW, I'M REALLY EXCITED TO BE ABLE TO TRY TO TAKE BETTER NOTES AT THESE MEETINGS SO I'LL OFFER TO HELP OUT IN SOME OF THOSE WAYS AND I JUST -- THIS WAS JUST REALLY PHENOMENAL. SO THANKS, EVERYBODY. THAT'S IT. >> JUST A QUICK THANKS TO EVERYONE FROM ME, AND ALSO A SPECIAL THANKS TO MALIA FOR HELPING US GET THE TCAC, NOW TAC, IN THE AIR. THANK YOU. >> YES, AND I WANT TO THANK EVERYBODY FOR A VERY RICH FIRST MEETING. IT WAS GREAT HAVING DINNER WITH EVERYBODY LAST NIGHT AND HAVING THE CONVERSATIONS, AND I'M REALLY EXCITED ABOUT THE OPPORTUNITIES AGAIN. THROUGH THIS MEETING, I HAVE A MUCH BETTER VISION OF WHERE I THINK WE CAN TAKE THE OFFICE, AND WITH YOUR GUIDANCE, WE'LL GET THERE IN SHORT ORDER. AND I THINK OUR FINAL CLOSING BLESSING PERSON WALKED OUT. >> WL TER DID HAVE TO LEAVE, HE SAID HIS RIDE WAS ROLLING. ...