CALL TO ORDER. WE'LL START BY RE-INTRODUCING OURSELVES. WE ARE BEING BROADCAST SO WE ARE ON VIDEO. SO, I'M ELISEIO PEREZ STABLE NIMHD DIRECTOR. >> NATHAN, DIRECTOR OF EXTRAMURAL SCIENTIFIC PROGRAMS. >> I'M LINDA GREEN, PROFESSOR OF LAW, UNIVERSITY OF WISCONSIN. >> MARGARET -- HARVARD MEDICAL SCHOOL AND THE DEPARTMENTS OF MEDICINE AND PSYCHIATRY AT MASSACHUSETTS GENERAL HOSPITAL. >> KELLIE GREEN, MAYO CLINIC, ROCHESTER MINNESOTA, DEPARTMENT OF MEDICINE AND NEPHROLOGY IS MY PRIMARY SPECIALTY. >> LINDA BURHANSSTIPANOV, PRESIDENT NATIVE-AMERICAN CANCER INITIATIVES INCORPORATED AND FOUNDER OF NATIVE-AMERICAN CANCER RESEARCH CORPORATION, CHEROKEE NATION OF OKLAHOMA. >> GREG TELL VARY APROFESSOR AT THE GRADUATE SCHOOL OF PUBLIC HEALTH AT SAN DIEGO STATE UNIVERSITY, DIVISION OF >> HUDSON, THORACIC SURGEON, FROM CHICAGO. >> BILL RILEY, DIRECTOR OF OBSSR AT NIH AND ALSO A MEMBER -- >> OFFICE OF THE ASSISTANT SECRETARY OF DEFENSE FOR HEALTH ADESPAIRS DIRECTOR OF WOMEN'S HEALTH ON PATIENT ADVOCACY. >> FERNAND DOE MEN DOZE APROFESSOR OF PEDIATRICS STANFORD UNIVERSITY. >> MARIA AND PROFESSOR OF EPIDEMIOLOGY, UNIVERSITY OF CALIFORNIA, SAN DIEGO. >> GOOD MORNING, DR. RIVERS, MOREHOUSE SCHOOL OF MEDICINE AND DIRECTOR OF THE CANCER HEALTH EQUITY CENTER AND ASSOCIATE PROFESSOR IN THE DEPENDENT OF COMMUNITY HEALTH AND PREVENTATIVE MEDICINE. >> LYNDA THOMPSON ADAMS, DEAN OF THE COLLEGE HEALTH SCIENCES AT WESTCHESTER UNIVERSITY. >> JOAN WASESSER MAN, DIRECTOR OF THE OFFICE OF EXTRAMURAL RESEARCH ACTIVITIES. >> GOOD MORNING, JOYCE SAUNTER, DEPUTY DIRECTOR OF NIMHD. >> OKAY. ARE THERE ANY VISITORS WHO WOULD LIKE TO INTRODUCE THEMSELVES? NO? OKAY. GREAT. I WILL SAY THAT AT THE END OF THE SESSION TODAY, WE WILL HAVE AN OPPORTUNITY FOR PUBLIC COMMENT OR QUESTIONS. FOR THOSE IN THE AUDIENCE WOULD LIKE TO ASK QUESTIONS, WHO ARE OUTSIDE NIH OR COUNCIL, WE'LL HAVE THAT OPPORTUNITY. SO, JOYCE, WE TURN TO REVIEW OF THE MINUTES. >> GOOD MORNING, AGAIN. SO, AS I MENTIONED YESTERDAY, IN YOUR FOLDERS YOU HAVE THE MINUTES FROM THE SEPTEMBER 2016 MEETING. HAVING HAD AN OPPORTUNITY TO REVIEW THE MINUTES, DO YOU HAVE ANY QUESTIONS OR COMMENTS ABOUT THEM? ANY CORRECTIONS? HEARING NONE, MAY I HAVE A MOTION TO APPROVE THE MINUTES? MAY I HAVE A SECOND? ALL IN FAVOR? ANY OPPOSED? THANK YOU VERY MUCH. THE MINUTES ARE APPROVED. YOU ALSO HAVE THE DATES FOR FUTURE COUNCIL MEETINGS. WE ARE ONLY GOING THROUGH 2018 BECAUSE AS MANY MAY HAVE HEARD, IN NOVEMBER THE CONFERENCE ROOMS ON THIS FLOOR WILL BE SHUT DOWN FOR RENOVATIONS. SO WE WILL BE REASSIGNED TO OTHER SPACES. BUT THE DATES THAT WE HAVE NOW ARE LOCKED IN. IT'S JUST FUTURE DATES WE WILL HAVE TO ROLE ROLL THE DICE. SO STARTING IN 2018, OUR MEETINGS WILL BE IN THE NATCHER. BUT DON'T WORRY ABOUT THAT. YOU'LL STILL BE ABLE TO GET THERE WITHOUT ANY PROBLEMS. THANK YOU VERY MUCH. GOOD MORNING. SO, BECAUSE WE HAVE THE DISCUSSION THAT GOT DEFERRED TO TODAY, I WANTED TO TRY TO GET A HEAD START TODAY. SO WE ARE GETTING AN EARLY START. I WANT TO GO OVER THE STATUS OF NIMHD OVER THE LAST, ALMOST FIVE MONTHS, I GUESS. OR FOUR MONTHS. AND I TALK ABOUT SOME OF THIS YESTERDAY BUT WE'LL GO OVER IT. EVERYBODY CAN SEE THE FRONT OKAY? YES. DIM THE LIGHTS IN THE FRONT, THAT'S GOOD. SO I MENTIONED THIS YESTERDAY ABOUT DR. COLLINS. HE HAS BEEN HELD OVER BY THE CURRENT ADMINISTRATION UNTIL FURTHER NOTION. WE EXPECT THAT HE WILL BE RE-APPOINTED BUT OF COURSE HE NEEDS TO HEAR DIRECTLY FROM THE SECRETARY OR THE PRESIDENT. SO, WE WILL BE ON THE LOOKOUT FOR THAT. LARRY TABAK, AS YOU KNOW, IS A PRINCIPLE DEPUTY AND WILL REMAIN AT LEAST FOR NOW, OF THE LEADERSHIP TEAM, KATHY HUDSON DID RETIRE FROM NIH IN DECEMBER AND IS OFF ON ANOTHER TAKE SOMETHING TIME OFF. SO THAT IS THE ONLY CHANGE IN BUILDING 1 TO MAKE NOTE OF. IS DAVID HERE? HE WAS HERE YESTERDAY. I SAW HIM. SO, A BIG STEP IN THE RIGHT DIRECTION ON AN IMPORTANT TOPIC FOR US IS THE APPOINTMENT OF DAVID WILSON TO BE DIRECTOR OF THE NEW NIH TRIBAL HEALTH REACH OFFICE. I WAS PRIVILEGED TO INTERVIEW THE TWO FINALISTS AND DR. HUNTER WAS ON THE SEARCH COMMITTEE FOR THIS POSITION. THIS IS AN IMPORTANT OFFICE THAT WILL HELP COORDINATE ALL NIH RESEARCH RELATED TO HEALTH OF AMERICAN INDIANS AND ALASKAN NATIVE NATIVE ACROSS NIH. HE BEGAN HIS NEW POSITION ON FEBRUARY 13 AND CAME TO US FROM THE DEPARTMENT OF HHS, OFFICE OF MINORITY HEALTH. I THINK HE IS VERY EXITED TO THE TOPIC AND -- COMMITTED -- HAS THE RIGHT KIND OF EXPERIENCE. HE IS A BASIC SCIENCE BY TRAINING, WHO AFTER A INITIAL RUN OF SUCCESS IN THE LAB, VEERED TOWARDS ADMINISTRATION AND LEADERSHIP AND I THINK WILL HAVE THE ENERGY AND THE INNOVATION TO REALLY MAKE SOMETHING OF THIS OFFICE. NIMHD WILL CONTINUE TO WORK VERY CLOSELY WITH THE OFFICE ON ISSUES RELATED TO ALL THE REPORTING AND OUR INTERACTIONS WITH ALL THE DIFFERENT TRIBAL CONSULTATION GROUPS THAT COME TO GOVERNMENT. BUT WE ARE VERY EXCITED ABOUT HAVING DAVID ONBOARD. THERE ARE CHANGES IN THE DATA SCIENCE WORLD AT NIH, PHIL BORN WHO WAS RECRUITED FROM UC SAN DIEGO, A NUMBER OF YEARS AGO, TO SORT OF DIRECT THE BIG DATA TO KNOWLEDGE PROGRAM AS ASSOCIATE DIRECTOR FOR DATA SCIENCE, ANNOUNCED HIS DEPARTURE FROM NIH A COUPLE OF MONTHS AGO AND HE WILL BE NOW PROFESSOR IN THE DEPARTMENT OF BIOMEDICAL ENGINEERING AT THE UNIVERSITY OF VIRGINIA IN CHARLOTTESVILLE. HE HAS AN ENDOWED CHAIR AND HAS A GOOD POSITION THERE. I THINK THE FUTURE OF DATA SCIENCE AT NIH IS NOW BEING LOOKED AT MORE CAREFULLY. THERE IS A PIVOT IN PROCESS. THE WHOLE PROGRAM WILL LIKELY BE HOUSED FULLY UNDER THE NATIONAL LIBRARY OF MEDICINE AND WHAT NIH OR HOW NIH DECIDES TO MANAGE THIS IN THE FUTURE WILL DEPEND ON NEW INPUT FROM THE DIFFERENT INSTITUTES. BUT I EXPECT THAT NIH WILL MAKE A COMMITMENT TO SOME LEVEL OF INFRASTRUCTURE FOR MAKING DATA. AND THE INSTITUTES TO MAKE COMMITMENTS TO DO SCIENCE IN THEIR PARTICULAR TOPIC. SO THIS, I THINK, WILL BE THE LIKELY FUTURE OF THE PROGRAM. BUT WE WILL SEE. AND DR. PATTY BRENNAN, WHO WAS WRITTEN UP IN THE SUNDAY "WASHINGTON POST" IN THE MAGAZINE, WILL SERVE AS INTERIM ASSOCIATE DIRECTOR FOR DATA SCIENCE DURING THIS CHANGE, THIS TRANSITION. BUT I EXPECT THE ENTIRE PROGRAM WILL BE HOUSED IN THE NATIONAL LIBRARY OF MEDICINE FOR THE FUTURE. THE 21ST CENTURY CURIOUS ACT WAS SIGNED IN DECEMBER BY THEN PRESIDENT OBAMA. AND THERE WERE SEVERAL PROVISIONS THAT RELATE TO NIMHD LISTED HERE. THEY ARE NOT ANYTHING EARTH-SHATTERING OR RADICALLY NEW. WE ARE TO BE CONSULTED REGARDING OBJECTIVES OF FUTURE ACTIVITIES TO TAKE REDUCTION OF HEALTH DISPARITIES IN MINORITY HEALTH INTO ACCOUNT. WE ARE TO COLLABORATE AND COORDINATE RESEARCH AND CREATE PARTNERSHIPS ACROSS THE AGENCY TO ACHIEVE THE GOALS OF NIH RELATED TO MINORITY HEALTH AND HEALTH DISPARITIES. SO REITERATING OUR GOALS AND MISSIONS. AND THEN THE SINCE OF CONGRESS TO INCREASE INCLUSION -- THERE IS THAT TERM AGAIN -- OF UNDERREPRESENTED POPULATIONS IN CLINICAL TRIALS. AND AS I MENTIONED YESTERDAY AT OUR SESSION, IN GENERAL, THE NIH LOOKS AT UNDERREPRESENTED POPULATIONS IN CLINICAL TRIALS AS ALL MINORITY GROUPS, NOT WHETHER THEY ARE UNDERREPRESENTED IN THE WORKFORCE AS WELL AS, I THINK, WE REALLY DO NOT THE HAVE THE DATA TO SAY THAT INDIVIDUALS OF LESS-PRIVILEGED SOCIOECONOMIC STATUS ARE ALSO LIKELY TO BE UNDERREPRESENTED. AND THEN THERE IS A WORK GROUP IN PROCESS THROUGH THE DIRECTOR'S OFFICE THROUGH BUILDING 1 OF WHICH NIMHD WILL BE A PARTICIPANT. A COUPLE OF UPDATES ACROSS THE AGENCY. THE COMMON RULE TOOK EFFECT ON JANUARY 19, 2018. SO, NEW REGULATION RIGHT BEFORE THE NEW PRESIDENT TOOK OFFICE. AND THIS IS REALLY DESIGNED TO BETTER PROTECT YOU AND PARTICIPANTS INVOLVED IN RESEARCH WHILE FACILITATING VALUABLE RESEARCH AND REDUCING BURDEN, DELAY, AND AMBIGUITY FOR INVESTIGATORS. NIMHD DOES NOT HAVE A MAJOR EFFORT IN THIS AREA BUT I THINK THIS IS AN IMPORTANT STEP FORWARD IN CONDUCTING CLINICAL RESEARCH, PARTICULARLY AROUND CLINICAL TRIALS. AND THEN IMPROVEMENTS IN CLINICAL TRIALS EMPHASIZING NIH FUNDS ABOUT 3 BILLION DOLLARS WORTH OF CLINICAL TRIALS A YEAR, ABOUT A BILLION OF THAT ACTUALLY IS AT NCI. TO THAT END, LAUNCHING AN EFFORT TO IMPROVE THE QUALITY AND EFFICIENCY OF THE TRIALS AND FOCUS ON A VARIETY OF KEY POINTS ACROSS A LIFESPAN. THERE IS A BIG EFFORT TO HAVE A COORDINATEED IRB, SO SINGLE-SITE IRB FOR LARGE TRIALS AND THIS IS A MAJOR STEP IN THE RIGHT DIRECTION. INSTITUTIONS HAVE TO YIELD SOME TERRITORY FOR THIS TO MOVE FORWARD AND I THINK THEY ARE BEING SORT OF -- THE CONDITIONS ARE BEING CREATED SO THAT TO MAKE IT EASY FOR THEM TO DO THAT. BRIEF UPDATE ON THE ALL OF US RESEARCH PROGRAM. REMEMBER, THIS IS THE PRIOR PRECISION MEDICINE INITIATIVE. ERIC DISHMAN COULDN'T BE HERE TODAY BUT WE EXPECT TO HAVE IN A FUTURE COUNCIL MEETING TO GIVE US FURTHER UPDATE. RECRUITMENT HAS NOT BEEN LAUNCHED, IN CASE YOU'RE WONDERING. YOU WILL HEAR ABOUT IT WHEN IT IS. WE ARE POISED TO ASSIST AND SUPPORT THE EFFORT OF ALL OF US. WE CONTINUE TO HAVE A STRONG CONNECTION WITH THE LEADERSHIP THROUGH A COUPLE OF OUR STAFF SCIENTISTS, DR. JAMES IS STILL PARTICIPATING ON ALL THE GROUP MEETINGS. AND ERIC DISHMAN ASKED ME TO BE PART OF HIS SORT OF, REFERENCE KITCHEN CABINET FROM OTHER IC DIRECTORS. THESE ARE THE DIFFERENT PARTNERS AND AWARDS THAT HAVE BEEN GIVEN. I THINK YOU CAN -- WE HAVE TALKED ABOUT SOME OF THIS BEFORE. BIOBANK AND MAYO CLINIC MENTIONED BEFORE. THESE ARE THE DIFFERENT AWARDS THAT HAVE BEEN GIVEN TO DIFFERENT RESEARCH MEDICAL ORGANIZATIONS AS WELL AS THE VARIETY OF FQACs. DR. TALL VADA HAS BEEN A LONG-TIME AFFILIATED WITH. AND I THINK THERE STILL WILL BE EFFORTS TO CONTINUE TO GIVE PARTICULARLY AROUND COMMUNITY ENGAGEMENT AWARDS FOR COMMUNITY ORGANIZATIONS. SO, WE'LL KEEP YOU POSTED. I DON'T KNOW WHEN THE LAUNCH WILL BE. EVERYTHING IS BEING DONE VERY DELIBLY AND ORGANIZED SO THAT NOT TO LAUNCH PREMATURELY. ALL OF US WAS FUNDED IN CURIOUS. IN CURES -- SO THIS IS NOT UNDER REVISION OR CONCERNS OF IT NOT MOVING FORWARD. SO THE ENGAGEMENT PARTNERSHIP FUNDING WILL BE 3-4 AWARDS. THE APPLICATIONS ARE DUE IN MARCH. SO IN ABOUT A MONTH. AND THE TOTAL PROJECT WILL BE ABOUT THREE: THEY VARY IN SIZE FROM 25,000 TO 500,000 DEPENDING ON THE TYPE OF PROJECT AND ORGANIZATION IN TERMS OF LOCAL, REGIONAL AND NATIONAL COMMUNITY ENGAGEMENT AND HEALTH CARE PROFESSIONAL ENGAGEMENT. SO, STAY TUNED TO THAT IF YOU ARE INVOLVED IN ANY OF THIS, CERTAINLY WE ARE HAPPY TO GIVE YOU ADVICE AS TO HOW TO PROCEED WITH THAT WITH THE KNOWLEDGE THAT WE HAVE AS WELL AS THE STAFF IN THE, ALL OF US RESEARCH PROGRAM. IN OCTOBER, MOST OF YOU KNOW, WE MADE A DECLARATION THAT SEXUAL GENDER MINORITIES WILL BE FORMERLY DESIGNATED AS A HEALTH DISPARITY POPULATION FOR RESEARCH PURPOSES. THIS WAS A LONG-TIME IN DEVELOPMENT. DR. TABAK ACTUALLY WAS THE LEAD FORCE BEHIND IT AT NIH. IT WENT THROUGH A COUPLE OF ITERATIONS. SHORTLY AFTER I GOT HERE IT WAS SORT OF PRESENTED TO ME AS, DO I AGREE WITH IT. AND AFTER CONSULTING WITH OUR LEADERSHIP AT NIMHD, WE MOVED FORWARD WITH IT AND IT GOT BOUNCED BACK AND THEN IT WENT BACK. A COUPLE OF VISITS TO THE DEPARTMENT AND REVISIONS AND WHAT THE PUBLIC FACE OF THIS IS. REGARDLESS, IT IS NOW OFFICIAL. WE DO HAVE THE AUTHORITY AS NIMHD DIRECTOR IN COLLABORATION WITH THE DIRECTOR FOR AGENCY FOR HEALTH CARE AND RESEARCH IN QUALITY, TO MAKE THIS DECISION. AND I THINK THE UNIFYING FACTOR WAS THE RECOGNITION THAT SEXUAL GENDER MINORITY POPULATIONS FACE NOT ONLY INIQUE HEALTH CHALLENGES IN PARTICULAR AREAS THAT HAVE BEEN UNDER STUDIED EXCEPT FOR HIV/AIDS, BUT ALSO THAT THEY HAVE BEEN SUBJECTED TO SYSTEMATIC DISCRIMINATION IN SOCIETY AND THEREFORE AS A CONSEQUENCE, FACE HEALTH DISPARITIES RELATED TO THAT. SO SHARING THAT WITH MINORITY GROUPS AS WELL AS PEOPLE LESS PRIVILEGED SOCIOECONOMIC STATUS AND RURAL POPULATIONS. SO, OUR DECLARATION IS TO FOCUS ON NIH RESEARCH, NOT ANY OTHER ASPECTS OF GOVERNMENT POLICY OR DISTRIBUTION OF RESOURCES. THAT IS REALLY FOR OTHER AGENCIES TO DECIDE. THERE WAS, I THOUGHT, A SLIDE I MISSED HERE. THAT'S OKAY. NIH IS ALSO SEEKING, AND WE ARE PARTICIPATING IN THIS GENOMIC MEDICINE RESEARCH FELLOWSHIP. I THINK THE APPLICATION DUE IS TOMORROW SO MAYBE A LITTLE LATE FOR THIS CYCLE. THE GENOME INSTITUTE APPROACH US ABOUT THIS AND THIS IS A PHYSICIAN FELLOW WHO WOULD THEN SERVE FOR TWO YEARS HERE TO LEARN ABOUT MANAGEMENT OF GENOMIC MEDICINE. SO IT'S NOT TO BECOME A MEDICAL GENETICIST OR TO BE A CLINICAL GENETICIST, BUT TO ACTUALLY HELP MANAGE PROGRAMS AND INTERFACE SO GENOMIC MEDICINE WITH CLINICAL CARE. THE NSGRI EXPERIENCE HAS BEEN VERY POSITIVE AND A NUMBER OF OTHER INSTITUTES, NHLBI AND NIM H AND THE ALL OF US RESEARCH PROGRAM, AGREED TO COSUPPORT IT. BY CO-SUPPORTING IT, WE MAKE A SMALL INVESTMENT AND GET TIME FROM THIS FELLOW AND THEN FOCUS ON THE ISSUE OF MINORITY HEALTH AND HEALTH DISPARITIES AS IT RELATES TO GENOMIC MEDICINE. ON FEBRUARY 23 THERE WAS A MEETING THAT DR. HUNTER ATTEND ATTENDED: WE PARTICIPATE IN DIFFERENT MEETINGS. SO I THINK WE HAVE SOMETHING TO ADD ABOUT THIS MEETING LATER. NIMHD NEWS. WE MENTIONED THIS YESTERDAY BUT JUST WANT TO PAUSE TO REMEMBER JUDY. I THINK THAT OVER THE COURSE OF A YEAR AND A HALF SHE WAS REALLY A VERY ACTIVE COUNCIL MEMBER PARTICIPATING IN OUR WORK GROUP ON THE CENTERS. SHE WAS A LUMINAIRE IN THIS AREA OF LGBT HEALTH AS WELL AS A SCIENTIST AND A LEADER IN HER COMMUNITY. JUDY REALLY DEDICATED HER LIFE TO PUBLIC SERVICE AND TO ADVANCING KNOWLEDGE. SHE WAS DIRECTOR OF THE POPULATION RESEARCH IN LGBT, AND CO-CHAIR OF THE FENWAY INSTITUTE IN BOSTON. SHE PLAYED A KEY ROLE IN THINKING ABOUT THESE ISSUES AROUND LGBT-FOCUSED RESEARCH AND TEACHING. HAD THE DISTINCTION OF SERVING ON THE INSTITUTE OF MEDICINE PANEL THAT FOCUSED ON LESBIAN HEALTH ELEMENT 20 YEARS AGO. AND WAS A SCIENTIST FUNDED BY NIMHD. IN FACT, SHE WAS A CO-PI ON A GRANT THAT WE RECENTLY LOOKED AT SHORTLY AFTER HER PASSING AWAY. AND I THINK WAS HUMBLE AT THE SAME TIME AN INTELLECTUAL FORCE. SO I JUST LIKE TO TAKE A MOMENT TO PAUSE TO ACKNOWLEDGE HER CONTRIBUTIONS TO NIMHD AND TO THE FIELD. [ MOMENT OF SILENCE ] WE WILL DEFINITELY MISS HER GREATLY. THERE IS A SPECIAL ISSUE, A SECTION ON BISEXUAL HEALTH RESEARCH IN HONOR OF DR. BRADFORD IN THE ARCHIVES OF SEXUAL BEHAVIOR. THE DETAILS ARE LISTED THERE. SO, DEADLINE IS IN TWO MONTHS. SO IF YOU HAVE SOMETHING ON THE SHELF THANK YOU HAVE NOT BEEN ABLE TO FINISH OR GET OUT, THIS IS AN OPPORTUNITY TO CONTRIBUTE AND TO BE PART OF A SECTION OF A RESEARCH SPECIAL ISSUE SECTION ON THE BISEXUAL HEALTH IN HONOR OF DR. BRADFORD. ON FEBRUARY 6, I PARTICIPATED IN A MEETING TO NIH OF THE HOUSE APPROPRIATION SUBCOMMITTEE ON LABOR, HHS. CHAIRMAN COAL WAS HERE ALONG WITH REPRESENTATIVES MIKE SIMPSON, ANDY HARRIS, WHO IS A PHYSICIAN FROM MARYLAND, JAMIE BUTLER FROM WASHINGTON, JOHN FROM MICHIGAN, NITA LOWE FROM NEW YORK AND ROSA FROM CONNECTICUT AND BARBARA LEE, WHO IS FROM SAN FRANCISCO BAY AREA AND I HAVE KNOWN FOR MANY YEARS OF THE IT WAS VERY INFORMAL CONVERSATION. IT WAS SORT OF A MEET AND GREET. NO PRESENTATIONS. THERE WERE OTHER NIH IC DIRECTORS PRESENT, INCLUDING DIANA AND JOSH GORDON WHO ARE THE MOST RECENT APPOINTMENTS AS WELL AS TONY FAUCI AND DOUG LOWY AND FRANCIS COLINS AND LARRY TABAK. THEY WENT ON TO TOUR THE MEDICAL CENTER, MEET WITH A PATIENT. THEY ALSO INTERACTED WITH SOME OF THE SCIENTISTS AND AT THE END OF THEIR VISIT, HAD A SESSION WITH TRAINEES WHICH APPARENTLY WAS VERY -- THEY WERE VERY IMPRESSED BY THAT. SO OVERALL, A GOOD VISIT. PHOTO OPPORTUNITY BUT IT WAS A GOOD INTERCHANGE DO MEET WITH LEGISLATIVE STAFF. THE SUPPORT FOR NIH FROM BOTH SIDES, BIPARTISAN FOR NIH IN CONGRESS IS VERY STRONG AND I THINK THAT HASN'T WAIFERED WITH THIS TRANSITION. OUR BUDGET, AS I MENTIONED YESTERDAY, WE ARE IN A CONTINUING RESOLUTION, PROBABLY FOR THE ENTIRE YEAR. OUR CURRENT ASSUMPTION OF THE BUDGET OF 280.3 MILLION DOLLARS IS BROKEN DOWN THIS WAY. LET ME JUST TAKE A MINUTE. I HAVE GONE BACK AND FORTH WITH BRIAN ON HOW TO PRESENT OR ORGANIZE OR KNOW ABOUT THIS. MOSTLY FOR ME, BUT I THINK HOPEFULLY WILL HELP YOU UNDERSTAND WHERE WE SPEND OUR RESOURCES. SO, I'LL START WITH HERE, HPGs, RO1S AND THEN RPGs OTHER. SO THE R21s AND UL1S AND THE OTHER KINDS OF THINGS I WILL CALL RESEARCH. WE ARE NOT QUITE AT 25% IF YOU ADD THIS UP. MOST INSTITUTES ARE AT 80% IN THIS CATEGORY. JUST TO GIVE YOU A SENSE OF WHAT NIMHD DOES COMPARED TO WHAT OTHERS DO. THE RCMI, AS YOU KNOW, IS A CONGRESSIONALLY-MANDATED LINE ITEM. IT'S THE ONLY MENTION OF NIMHD IN THE APPROPRIATIONS, USUALLY. AND SO IT'S ABOUT NOT QUITE 21% OF OUR TOTAL BUDGET AND WE INHERITED THIS FROM THE NCRR WHEN IT WAS DISSOLVED IN 2012. WE TALKED A LOT YESTERDAY ABOUT THE ENDOWMENT. YOU CAN SEE IT'S ABOUT 4% OF OUR BUDGET. IT'S ALSO A SPECIAL PROGRAM. SO I THINK THAT IS ONE REASON WHY WE PARCEL IT OUT SEPARATELY. WE ARE NOT MANDATED OR REQUIRED TO DO THIS PROM. WE ARE AUTHORIZED TO DO IT. IT IS JUST SOMETHING WE DIDN'T MENTION YESTERDAY IN OUR CONVERSATIONS. OTHER CENTERS IS EVERYTHING ELSE THAT WE HAVE CALLED A CENTER. YOU CAN SEE THAT IT ACTUALLY IS BIGGER THAN OUR RESEARCH GRANTS. THIS INCLUDES BOTH THE CENTER FOR EXCELLENCE AS WELL AS THE TCCs AND WE ARE GOING TO TALK ABOUT THAT LATER THIS MORNING, OR EARLY THIS AFTERNOON. THIS IS A BIG CHUNK OF OUR BUDGET HERE. UNDER TRAINING, IT'S ALMOST THEORETICAL, RIGHT? BECAUSE IT'S NOT A T32 OR A K. THERE ARE FELLOWSHIPS THERE, F31s, AND F32s, THERE IS ONE OR TWO K22s THAT ARE OR K00 FUNDED THROUGH NIMHD. SO I MOSTLY INCLUDE HERE OUR LOAN REPAYMENT PROGRAM COME I'M CALLING TRAINING FOR MY OWN CATEGORIZATION, NOT FORMERLY CONSIDERED THAT BY NIH AND ALSO THE MED STUDENT PROGRAM THAT WE DO FOR INTERNATIONAL PLACEMENT, THE MHIRT, WHICH IS A SUBSTANTIVE PROGRAM. THIS IS ANOTHER AREA THAT I THINK WE WILL NEED TO EVALUATE AS WE MOVE FORWARD, PARTICULARLY AFTER WE FINISH THE REVIEW OF THE BOTH OF WHAT WE FINISH THE REVIEW OF THE CENTERS BUT LOOK AT THE ENDOWMENT AND TRAINING WILL BE NEXT. YOU NOTICE THAT INTRAMURAL RESEARCH HERE IS BARELY NOTICEABLE. WHAT IS IT? 2.2% AND A GOOD AMOUNT OF THAT IS TAXES. THEY ARE CAPS AS WE CALL THEM HERE THAT GO TO THE CLINICAL CENTER AND OTHER KINDS OF THINGS. THIS WILL NEED TO GROW AS WE EXPECT TO RECRUIT A SCIENTIFIC DIRECTOR AND ESTABLISH A WORLD-CLASS INTRAMURAL RESEARCH PROGRAM AT NIMHDT DOESN'T HAVE TO BE BIG BUT IT DOES HAVE TO BE GOOD. AND WE ARE LOOKING FORWARD TO BEING ABLE TO DO THAT AND LEAD THAT AS A LEGACY FOR THE INSTITUTE AT NIH. THEN THE RESEARCH MANAGEMENT AND SUPPORT IS TO RUN THE OPERATION. SO WHAT DO WE SPEND TO PAY FOR ALL OF US? PAY FOR ALL OF THIS? AND OUR MEETINGS AND OUR OVERHEAD, OUR RENT, ET CETERA? SO IT'S ABOUT NOT QUITE 6 OR 7% OF OUR BUDGET. IT'S IN THE BALLPARK OF WHAT OTHER INSTITUTES SPEND. I DON'T HAVE THAT -- HAVEN'T SEEN THAT TABLE BUT I WILL -- I'M TOLD IT IS IN THAT RANGE. THEN WE HAVE SOME CONTRACTS AND OTHER PROGRAMS, WHICH ARE MISCELLANEOUS HERE FOR THE 2%. SO THIS WILL GIVE YOU A FLAVOR OF HOW WE SPEND THE MONEY AND SINCE I EXPECT THAT WE WILL EITHER STAND STILL OR HAVE A SLIGHT DECREASE THIS YEAR, BASED ON WHAT HAPPENS WITH THE CONTINUING RESOLUTION, WE ARE LOOKING NOW TOWARDS FISCAL YEAR 18 AND WHAT WE HOPE WILL BE SOME MODEST, IF NOT SIGNIFICANT INCREASE. FOR THE '17 APPROPRIATIONS WHAT WAS APPROVED IN THE PRESIDENT'S BUDGET, WE WOULD HAVE BEEN THE SAME. THAT WAS THE STRATEGY THAT THE PRIOR ADMINISTRATION HAD WITH BUDGET IN DEALING WITH THE CONGRESS. THE HOUSE GAVE US A BOOST UP TO 286 AND THE SENATE EVEN HIGHER AT 292. SO WE FIGURED WE WOULD BE UP SOMEWHERE IN BETWEEN HERE, RIGHT? THE BUT OF COURSE NOTHING HAPPENED. AND SO WE ARE BACK AT THIS LEVEL. AND WHETHER OR NOT WE GO UP BY 2 1/2% OR SOMETHING IN FISCAL '18L DEPEND ON WILL DEPEND ON THE POLITICAL PROCESS THAT IS YET TO BE PLAYED OUT. TURNING TO NIMHD ACTIVITIES, I'LL BORE WITH YOU SOME OF OUR ACTIVITIES OVER THE PAST FOUR MONTHS. DO YOU RECOGNIZE THIS GUY HERE? SHE IN THE BACK OF THE ROOM. SO, BACK AFTER THE LAST COUNCIL MEETING, I DID A COUPLE OF TRAVEL AND PRESENTATIONS. I WENT TO PHILADELPHIA TO PRESENT TO THE BA HEALTH SERVICES RESEARCH GROUP. I CAME IN AT THE TAIL END OF A TWO-DAY MEETING WHERE THEY GATHER RESEARCHERS AND I SAW SOME OLD COLLEAGUES AND SOME INVESTIGATORS I HAVE KNOWN OVER THE YEARS. MY FORMER MEMBER OF OUR COUNCIL AS WELL WERE THE KIND HOSTS OF MY PRESENTATION THERE. I TRAVELED TO FORT LAUDERDALE FOR PRESENTATION OF THE AMERICAN ASSOCIATION FOR CANCER RESEARCH AND WE HAD A PRESENCE THERE AS AT LEAST AGAIN ROOT AND REGINA WERE BOTH THERE. THERE WAS A LARGE PRESENCE FROM NCI LEADERSHIP THERE AS WELL. AND I GAVE A KEYNOTE ADDRESS ON THE FIRST DAY. IT WAS EXCITING MEETING TO BE AT. I THINK I HAD NOT ATTENDED THAT BEFORE BUT IT IS FOCUSED ON DISPARITIES AND ABOUT 500 PEOPLE ATTENDED, BRIAN? AND SO, IT'S A GREAT TO SPEAK IN A ROOM WHERE THE MAJORITY OF PEOPLE PRESENT WERE SCIENTISTS AND PEOPLE OF COLOR. AND SO, ALTHOUGH CANCER IS VERY BROAD SPECTRUM, BEHAVIOR, BIOLOGY, SYSTEMS, HEALTH CARE SETTINGS, I THINK IT IS AN OPPORTUNITY TO HAVE A PRESENCE. AND I THINK THIS YEAR IT'S IN ATLANTA, RIGHT? AND THEN I ALSO WAS PRIVILEGED TO BE BACK AT MY FORMER INSTITUTION AT UCSF IN OCTOBER FOR THE 10th ANNUAL HEALTH DISPARITIES RESEARCH SYMPOSIUM, A SYMPOSIUM I STARTED 10 YEARS -- IN 2006 AT UCSF AND SO WAS PLEASED TO BE BACK FOR THE TENTH ANNIVERSARY. WE HAD ATTENDED A MEETING, ACTUALLY, BY DR. SULLIVAN AND HOSTED BY THE NATIONAL LIBRARY OF MEDICINE ON OCTOBER 4 IN LIPSIT AMPHITHEATER AT THE CLINICAL CENTER. YOU KNOW DR. SULLIVAN IS A LEADER IN THIS FIELD, FORMER SECRETARY OF HEALTH AND HUMAN SERVICES IN THE GOVERNMENT AND HAS HAD A SIGNIFICANT RELATIONSHIP WITH NIMHD SINCE ITS FOUNDING. HE WAS ACTUALLY UNDER HIS LEADERSHIP AT THE OFFICE OF MINORITY PROGRAMS WAS ESTABLISHED AT NIH WHICH SUBSEQUENTLY BECAME THE OFFICE OF MINORITY HEALTH RESEARCH AND THEN THE CENTER AND THEN THE INSTITUTE. SO, I HAVE CONTINUED AN ONGOING RELATIONSHIP WITH DR. SULLIVAN. IT WAS REALLY A WONDERFUL EVENT, I THOUGHT, IN THAT HE DIDN'T ACTUALLY READ FROM HIS BOOK VERY MUCH. HE READ A LITTLE BIT. BUT MOSTLY HE TALKED ABOUT HIS LIFE. AND THAT WAS VERY -- HE DID A GREAT JOB OF SORT OF COMMUNICATING SOME STORIES IN AN ENTERTAINING AND SUBSTANTIVE WAY. AND THEN THE QUESTION AND ANSWER PERIOD WAS GREAT. I WASN'T ABLE TO STAY FOR THE RECEPTION BECAUSE OF AGAIN, I HAD TO TRAVEL, BUT I REALLY VERY MUCH ENJOYED THAT INTERACTION WITH HIM. OTHER ACTIVITIES I WAS INVOLVED WITH, I WENT TO THOMPKINS SEPTEMBER 23 AND GAVE GRAND ROUNDS AT THE DEPARTMENT OF MEDICINE, VISITED WITH THEIR GENERAL INTERNAL MEDICINE FELLOWS AND SPENT TIME WITH SOME OF OUR COLLEAGUES WHO YOU KNOW. I WAS IN MOREHOUSE SCHOOL OF MEDICINE ON SEPTEMBER 28 WHERE I GAVE THE 7th ANNUAL JAMES REED LECTURESHIP. SPENT ABOUT MOST OF THE DAY THERE, MET WITH DR. REED AND HAD SOME -- A GOOD MEETING WITH A GROUP OF INVESTIGATORS AT MORE HOUSE. SO IT WAS A GOOD SESSION, A GOOD MEETING. THEN WENT TO UNIVERSITY OF MIAMI WHERE I GAVE GRAND ROUNDS TO THE DEPARTMENT OF PUBLIC HEALTH SCIENCE AND THEN THE VA HOSPITAL HAD THEIR 30th ANNIVERSARY FOR GERIATRIC RESEARCH CENTER. THE REASON I WAS ASKED TO ATTEND THAT WAS, MY FATHER WAS THE CHIEF OF STAFF AT THE VA IN MIAMI WHEN THAT CENTER WAS ESTABLISHED. AND HE WAS INSTRUMENTAL IN GETTING IT GOING. SO, THEY ASKED ME TO COME BACK IN THE SENTIMENTAL WAY. SO I GOT AN OPPORTUNITY TO TELL THEM ABOUT MINORITY HEALTH AND HEALTH DISPARITIES IN OLDER ADULTS. I VISITED HOWARD UNIVERSITY ON NOVEMBER 9. MOSTLY SPENDING TIME WITH THEIR RCMI INVESTIGATORS AND BILL SUTHERLAND AND GAVE A LECTURE. AND THEN THEY PRESENTED RESEARCH. IT WAS REALLY INTENDED FOR ME TO REACT TO IT WHICH WAS FUN. I ENJOY ALWAYS MAKING COMMENTS ABOUT PEOPLE'S WORK AND THAT WAS THE FOCUS. SO, AND THEN HAD SOME TIME WITH BILL AND OTHER LEADERS. AND I'M GOING BACK TO HOWARD IN EARLY APRIL. AND THEN THE 18th ANNUAL SMALL BUSINESS SBIR, STT CONFERENCE THAT NIH SPONSORS WAS IN THE LOVELY CITY OF ORLANDO WHERE I GAVE A LECTURE, KEYNOTE ADDRESS. AND I THINK IT WAS WELL RECEIVED BY THAT GROUP TO LEARN ABOUT MINORITY HEALTH AND HEALTH DISPARITIES THE WAY NIMHD DOES. AND OCTOBER 5 WAS AT MAYO CLINIC WITH EDDIE GREEN. THERE HE IS TALKING. AND YOUR HEALTH DISPARITIES -- OR LISTENING, RIGHT? [ LAUGHS ] AND IT WAS A GOOD MEETING. IT WAS ALSO RELATED TO ALL OF US PMI SESSION HAPPENING DOWNTOWN SO I WENT THERE ALONG WITH KATHY HUDSON AND I THINK TERRY WAS ALSO THERE FROM NIH. AND THEN I WAS REALLY QUITE MOVED BY MY VISIT TO MEHARRY ON HOLIDAY, OCTOBER 10. THEY HAD THEIR 141th CONVOCATION OF THEIR MEDICAL STUDENTS AND OTHER HEALTH PROFESSIONAL STUDENTS. AND AGAIN, IT WAS MORE OF A LITTLE INSPIRATION IF YOU WISH BUT I WAS JUST REALLY DELIGHTED TO BE AT THAT INSTITUTION, SPEAK TO A ROOM FULL OF YOUNG PEOPLE WHO ARE PRIMARILY MINORITIES. NOT EXCLUSIVELY AFRICAN-AMERICAN. AND TO INTERACT WITH THE LEADERSHIP OF THAT INSTITUTION AND THEIR RESEARCHERS. SO, IT WAS REALLY A WONDERFUL EXPERIENCE AND I LEARNED A LOT FROM THESE VISITS. AND THE EXPERIENCE OF INTERACTING WITH FOLKS EVEN THOUGH BY THE END OF THE DAY, I'M EXHAUSTED. AND THEN I HAD A SIMILAR VISIT TO UNIVERSITY OF TEXAS SOUTHWESTERN WHERE MY AAMC COLLEAGUE, MARK, WHO I THINK IS HERE, TOOK ON THE ROLE OF BEING I GUESS, VICE PRESIDENT OR ONE OF THE LEADERS OF NC SOUTHWESTERN PROVOST AFTER BEING AT AAMC FOR SIX YEARS. MARK, WAS THE CHIEF DIVERSITY OFFICER AT AAMC. HE HAS NOW BEEN REPLACED. THE NEW PERSON, FERNANDO, STARTS THIS MONTH OR NEXT MONTH? I FORGET. HE'S FROM UC DAVIS AND I SPENT HALF A DAY AT AAMC EARLIER THIS MONTH MEETING WITH OUR LEADERSHIP. SO, I'M VERY EXCITED ABOUT POTENTIAL OPPORTUNITIES THAT WE MAY HAVE INTERACTING WITH AAMC AND LEVERAGING THEIR INFLUENCE AND THEIR FORUM TO HELP ADVANCE OUR AGENDA, PARTICULARLY AROUND ISSUES RELATED TO HEALTH CARE SETTINGS. BUT, UC SOUTHWESTERN IS NOT UNLIKE UCSF. IT'S VERY HIGH-POWERED. LOTS OF RESEARCHERS THERE. AGAIN, THIS WAS A MARLIN LUTHER KING, Jr. COMMEMORATION. I ADAPTED A QUOTE THAT DR. KING HAD USED IN ONE OF HIS SPEECHES ABOUT THE AHRQ OF THE MORAL UNIVERSE BENDING TOWARDS JUSTICE. ONE OF MY FORMER MENTORS USED IN A SPEECH IN A TALK HE HAD GIVEN AT GENERAL MEDICINE SOCIETY A FEW YEARS AGO AND EXPLORED THAT. IT WAS ACTUALLY A QUOTE FROM A 19TH CENTURY CHRISTIAN PHILOSOPHER AS OPPOSED TO SOMETHING THAT DR. KING HAD JUST CAME UP WITH. IT WAS QUITE MOVING AGAIN TO BE PART OF THAT CEREMONY AND PARTICIPATE WITH THE LEADERSHIP. THIS IS DR. PA DOLL SKI WHO IS THE PRESIDENT OF UT SOUTHWESTERN AND HE, FOR A LONG TIME, WAS A INVESTIGATOR, CLINICAL INVESTIGATOR AT HARVARD. FINALLY I THINK MY COUNCIL ROUNDS -- DEVELOP OUR STRATEGIC PLAN, AND I WILL BE GOING BACK TO THE COUNCIL SOMETIME LATER THIS YEAR AND EARLY NEXT YEAR. SO, IN JANUARY, I WAS BOTH AT NURSING AND AT NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL DISEASES. THERE I AM WITH STEVEN KATZ, WHO IS THE DIRECTOR OF NIAMS AND A GOOD FRIEND. AND JUST ON FEBRUARY 1, I WAS IN BOSTON FOR THE BOSTON UNIVERSITY SCHOOL OF PUBLIC HEALTH SYMPOSIUM ON DISPARITIES WHERE THEY ASKED ME TO SPEAK ABOUT RACISM. AND I SPENT THE DAY THERE AT THAT SYMPOSIUM. ALONG WITH OTHER INVESTIGATORS WHO WERE BROUGHT IN AS WELL AS LOCALLINGS. IN OCTOBER OF 24 AND 25, WE HOSTED WITH NATIONAL HUMAN GENOME RESEARCH INSTITUTE. A VERY IMPORTANT AND INTERESTING SCIENTIFIC WORKSHOP ON THE USE OF RACE, ETHNICITY AND GENOMIC AND BIOMEDICAL RESEARCH. I THINK THE BOTTOM LINE WITHOUT GOING THROUGH ALL THE DETAILS OF THIS SLIDE, WERE THAT SELF IDENTIFIED RACE ETHNICITY AS WE ASK, WHETHER YOU LIKE THE CATEGORIES OR NOT, IS PRETTY GOOD. AND THE EXCEPTION TO THAT, AT LEAST BASED ON THE AVAILABLE EVIDENCE IS AMERICAN INDIANS. THE DATA FROM OR ANALYSIS PRESENTED THERE BY NEILERISH FROM KEISER, CONFIRMED THROUGH THE ANCESTRAL MARKER IF YOU SAY I'M AFRICAN-AMERICAN, YOU HAVE AFRICAN ANCESTRY. IF YOU SAY YOU'RE LATINO, YOU HAVE ALMOST ALL LATINOS HAVE SOME EUROPEAN ANCESTRY AND ABOUT 80% HAVE SOME INDIGENOUS, AMERICAN INDIGENOUS ANCESTRY. AND A SMALL NUMBER HAVE AFRICAN ANCESTRY AS WELL. SO IT'S AN INTERESTING CONCEPT. OF COURSE, EAST ASIANS ARE ALSO UNIFORMLY -- THEY DIDN'T HAVE ENOUGH SOUTH ASIANS TO MAKE DEFINITIVE STATEMENTS ABOUT THAT. THERE WAS A REALLY EXCITING DISCUSSION FROM THE SOCIOLOGY PERSPECTIVE, FROM SOCIAL SCIENTISTS, FROM GENETICISTS AND ALICE WAS THERE AS WELL, THE PERSON MEANED IN THE PAPER THAT WAS MENTIONED YESTERDAY -- MENTIONED IN THE PAPER YESTERDAY. I THINK WE HAD A REALLY GREAT CONVERSATION. ACTUALLY KATRINA ARMSTRONG WAS THERE AND A NUMBER OF OTHER RESEARCH LEADERS AND SOME CLINICIANS WERE PRESENTED. SO, LOOK FOR SOMETHING COMING FROM US IN TERMS OF A PRODUCT. WE EXPECT TO HAVE SOME SORT OF A PAPER THAT ERIC AND I WILL CO-AUTHOR ON A SUMMARY STATEMENT. WE'LL TRY TO PUT IT INTO A HIGHER JOURNAL, AS WELL AS THE STAFF THAT WORKED ON THIS FROM BOTH INSTITUTES, BOTH DEBORAH AND REGINA FROM NIMHD WERE INVOLVED AS WELL AS VINCE BON AM AND OTHERS AT GENOME. SO, TO COME UP WITH A SUMMARY OF RECOMMENDATIONS OF HOW WE APPROACHED THIS. AND I THINK WE HAVE TO THINK ABOUT THE FUTURE. SORT OF LIKE WHAT IF, IN 10 YEARS, PEOPLE HAVE EASILY-AVAILABLE GENETIC INFORMATION IN THEIR EM! ALTHOUGH AFTER TALKING TO SAEED LAST NIGHT, I DON'T KNOW IF THERE WILL EVEN BE DOCTORS. THERE WILL BE ROBOTS DECIDING THIS. WHO KNOWS! AND THEN WHEN WILL THIS MATTER? AND I SORT OF HAVE THE THINKING FUTURISTICALLY AS TO WHAT IT WILL BE LIKE IN 10-15 YEARS AS OPPOSED TO WHERE WE ARE NOW. WE HAD A FABULOUS EVENING WITH THE CHILDREN'S FAMILIES EARLIER OR LATE IN THE FALL. THE NIMHD WORK-LIFE COMMITTEE GAVE US AN OPPORTUNITY TO BE THERE. I DIDN'T REALLY KNOW MUCH ABOUT THE CHILDREN'S BEFORE I GOT THERE. IT'S A RESIDENTIAL FACILITY JUST DOWN THE STREET FROM THE CLINICAL CENTER. IT HOUSES THE FAMILIES AND SOMETIMES CHILDREN WHO ARE AT NIH FOR CLINICAL PROTOCOLS. IT'S PARTICULARLY STRESSFUL TIME, OF COURSE, FOR CHILDREN OFTEN. THESE ARE YOUNG PEOPLE COMING HERE FOR LAST RESORT. THEY HAVE EITHER INCURABLE DISEASE OR ARE ON EXPERIMENTAL PROTOCOLS. IT IS COMPLETELY SUPPORTED BY DONATIONS. AND I THINK THAT BEING PROACTIVE IN SUPPORTING IT IS VERY FULFILLING FOR US AS WELL AS WHAT WE CAN CONTRIBUTE TO THE ENTERPRISE. AND SO WE WENT AND BROUGHT FOOD. A NUMBER OF THE STAFF PARTICIPATED. HERE ARE A COUPLE OF PHOTOS. I DID REALLY SERVE FOOD ALONG WITH KIMBERLY AND ANGELA AND JESSICA AND TAMMY AND TESSY. THANK YOU FOR DOING THAT. I THINK WE ARE PLANNING TO GO BACK FOR A SUNDAY BRUNCH OR BREAKFAST LATER THIS SPRING. LOTS OF ACTIVITIES ON THE STAFFING FRONT. MOST OF YOU KNEW DONNA BROOKS WAS OUR INAUGURAL EXECUTIVE OFFICER AT NIMHD. SHE SPENT 42 YEARS IN FEDERAL SERVICE AND SHE RETIRED FROM HER POSITION ON OCTOBER 31, 2016. SO, HER LAST COUNCIL MEETING WAS LAST ONE. WE HELD A RETIREMENT CELEBRATION IN HER HONOR AT THE CLINICAL CENTER WHERE HER FAMILY, FRIENDS AND COLLEAGUES WERE IN ATTENDANCE AND I THINK WE HAD AN OPPORTUNITY TO EXPRESS OUR APPRECIATION FOR ALL OF THE YEARS OF SERVICE THAT DONNA MADE. AND SHE HAD A LONG CAREER AT NIH OF WHICH THE LAST, I THINK, 16 WERE WITH BOTH THE CENTER OF MINORITY HEALTH AND NIMHD. A NUMBER OF OTHER STAFF LEFT. AESHA WENT TO THE SECRET SERVICE, CHRIS FOSTER TRANSFERRED TO THE ALL OF US RESEARCH PROGRAM. GERDA MOVED OVER TO NATIONAL, IN THIS BUILDING, NATIONAL INSTITUTE ON AGING AND MILDRED WENT TO GRANTS MANAGEMENT SPECIALIST FOR THE NATIONAL CENTER FOR COMPLEMENTARY AND INTEGRATIVE HEALTH AND THEN DEBORAH WILSON ALSO RETIRED FROM FEDERAL SERVICE. AFTER DONNA RETIRED, KIMBERLY ALAN STEPPED INTO THE ROLE AS ACTING EXECUTIVE OFFICER. KIMBERLY HAD COMING TO NIMHD FROM THE NATIONAL INSTITUTE OF GENERAL MEDICAL SCIENCE WHERE IS SHE HAD BEEN DEPUTY DIRECTOR AND ACTING EXECUTIVE OFFICER THERE AS WELL FOR A FEW MONTHS. IN AUGUST OF 2015. SO ARRIVED TO NIMHD SHORTLY BEFORE I DID. AND THROUGH A COMPETITIVE PROCESS WHERE WE HAD A VERY RIGOROUS SEARCH COMMITTEE AND MANY APPLICANTS, WE INTERVIEWED A NUMBER OF APPLICANTS AND CAME DOWN TO A FEW PANELISTS AND WE SELECTED HER AS OUR NEW EXECUTIVE OFFICER AND GOT HER THROUGH THE PROCESS BEFORE JANUARY WHATEVER, WHEN WE WERE NOT ABLE TO DO IT. SO, THANK YOU KIMBERLY AND WELCOME TO YOUR ROLE AS OUR EXECUTIVE OFFICER. [ APPLAUSE ] WE ALSO WERE ABLE TO UNCLOG THE LOG JAM OF RECRUITMENT THAT WE HAD BEEN PLANNING FOR SOMETIME WITH THE SENSE OF URGENCY, I SUPPOSE, THAT DEADLINES SEEM TO BRING WHEN YOU APPLY FOR A GRANT. IT'S A SIMILAR THING. AND A NUMBER OF APPOINTMENTS WERE MADE. I THINK WE ENDED UP APPOINTING 12 NEW PEOPLE TO THE INSTITUTE IN JANUARY THAT STARTED IN JANUARY AND A NUMBER OF NEW SCIENTISTS. SO I'M JUST GOING TO -- AND THERE IS A SUPPLEMENT IN YOUR FOLDER THAT HAS A LITTLE BIT MORE INFORMATION ON EACH OF THE NEW APPOINTMENTS BUT BENYAM, IF YOU WANT TO STAND. SO THE NEW APPOINTMENTS -- IF HE IS HERE. >> [ OFF MIC ] >> OKAY. DR. BEDA, JEAN FRANCOIS. DR. LOWDEN. JANET. CHRIS. ALSO A SCIENTIFIC STAFF. RICH ADD PALMER WHO WAS NOT NEW-NEW, BUT MOVED TO OUR OFFICE OF EXTRAMURAL RESEARCH ADMINISTRATION AND REVIEW. MAYORAL SUFIAN, A BEHAVIORAL SCIENTIST. MARY ANN SCREWS A POSTBAC WITH DR. TROY. I DON'T KNOW IF SHE IS HERE -- MARY ANN DRUCE IS -- ERIC ROD REEK ES? HE IS MY STAFF SCIENTIST WHO I HIRED TO WORK WITH ME -- ERIC RODRIGUEZ -- ON MY OWN INTRAMURAL RESEARCH. AND HE IS TECHNICALLY HOUSED IN NATIONAL HEART, LUNG AND BLOOD INSTITUTE, WHICH IS WHERE MY LAB IS BASED AND HE IS REALLY PART OF THE NIMHD FAMILY. AND COMMUNICATION SPECIALIST -- KYAN. AND AARON, OUR PROMINENT COWBOY FAN. AARON HAS BEEN WORKING WITH NATASHA IN LEGISLATIVE OFFICE FOR QUITE SOMETIME BUT WE FORMALIZED HIS TRANSFER AS A PROGRAM SPECIALIST AND HE IS REALLY A CRITICAL PART OF THE TEAM. CARLENE WHO IS IN MANAGEMENT ANALYST IN THE ADMINISTRATIVE OFFICE. REBECCA NEWTON WHO IS KEEPING ME HONEST ON MY PRESENTATIONS. BRENDA PARKER WHO IS MANAGING, HELPING TO MANAGE ALL OF THE INTRAMURAL PROGRAM AS WELL AS OTHER TASK AND ADMINISTRATION. SHELLI POLLARD, OUTREACH COORDINATOR. CAROL CHRISTIAN WHO IS AN ANALYST, REALLY KNOWLEDGEABLE ABOUT ALL THE DATA SYSTEMS THAT ARE BEING USED IN EXTRAMURAL RESEARCH AND IS GOING TO HELP US LOT, I HOPE, I THINK, OVER THE NEXT YEAR. STEVE NEWEL, WHO IS ALSO IN THE OFFICE OF PLANNING, ALSO NOT HERE. OKAY. COASTER WILLIAMS PERRY, WHO CAME BACK FROM BEING ON DETAIL. SHE IS NOT HERE. SHE IS IN ANOTHER ROOM. OKAY. SHE IS WORKING AS A PROGRAM ANALYST ALSO IN THE OFFICE OF PLANNING AND REPORTING. AND BARBARA. I THINK I SAW YOU HERE. I'M NOT GOING TO PRETEND TO SAY YOUR LAST NAME. [ LAUGHS ] OUR STATISTICIAN AND WE LOOK FORWARD TO REALLY LEVERAGING YOUR TALLENTS AND SKILLS IN A VARIETY OF WAYS AT NIMHD AS WE SORT THINGS OUT. [ APPLAUSE ] THANK YOU. A COUPLE OF THINGS AS WE TALK ABOUT GRANTS AND A LITTLE BIT OF SCIENCE. THIS IS SOMETHING NOTEWORTHY ABOUT A NEW TOOL TO HELP NATIONAL DIABETES PROGRAM REACH SENIORS FROM THE UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND PUBLIC HEALTH TO DEFINE AREAS OF DEPRIVATION OR A TOOL THAT ALLOWS NEIGHBORHOODS RANKED BY SOCIOECONOMIC DISADVANTAGE. AND THEN CMS IS USING THIS TOOL TO IDENTIFY NEIGHBORHOODS TO DELIVER THERE, EVERYONE WITH DIABETES COUNTS, SELF-MANAGEMENT EDUCATION PROGRAM FOR MEDICALLY UNDERSERVED SENIORS. SO NEXT STEP IS TO RESEARCHERS ARE DEVELOPING ON LINE USER INTERFACE TO MAKE DATA FREELY AVAILABLE. IT'S WORTH PAUSING AND JUST SAY, WHAT ARE THE GOALS? IF YOU SAY SENIORS, I'M ALMOST THERE. AT 65. BUT WE REALLY TALKING ABOUT 65, 75, 80? AND WHAT ARE WE DOING WITH PEOPLE WITH DIABETES? IT'S NOT ABOUT TYPE CONTROL. IT'S NOT ABOUT GETTING YOUR HEMOGLOBIN A1C TO 7 OR 6, GOD FORBID. BUT REALLY SORT OF KEEPING PEOPLE OUT OF TROUBLE. SO YOU WANT TO AVOID AMPUTATIONS, HYPERCOMA, HOSPITALSES THAT SHOULD BE PREVENTIBLE TO PREVENT WITH VACCINES OR MANAGEMENT OF THE LEADING CAUSE OF DEATH AND DISABILITY AMONG ADULTS IN THE UNITED STATES WHICH IS CARDIOVASCULAR DISEASE AND DIABETES DOUBLES YOUR RISK FOR THAT. SO I THINK IT'S PUTTING THIS IN CONTEXT OF WHAT OUR GOALS ARE AND WHAT WE SHOULD REACH AND WHERE WE SHOULD EMPHASIZE OUR EFFORTS AND SORT OF THAT'S WHAT WE ARE REALLY GETTING AT. AND THOSE ARE THE OUTCOMES THAT ARE SENSITIVE TO BIGGEST CHANGE. THERE WAS -- AND I DON'T HAVE A SLIDE ON THIS. A REPORT FROM MMWR FROM THE CDC EARLIER THIS YEAR, THAT THE END STAGE RENAL DISEASE LINKED TO DIABETES IN THE U.S. HAS DECREASED DRAMATICALLY IN THE LAST 20 YEARS. PARTICULARLY AMONG AMERICAN INDIANS AND ALASKA NATIVES. DECREASE OF OVER 50%. AND AMONG AFRICAN-AMERICANS AND LATINOS, THE DECREASE WAS BETWEEN 15 AND 20%. NOW, ALL OF THESE RATES ARE STILL CONSIDERABLY HIGHER THAN AMONG WHITES SO IT'S NOT LIKE WE WON. BUT IT JUST GOES TO SHOW YOU THAT IF YOU IMPLEMENT EVIDENCE-BASED MEDICINE IN AN AREA THAT WE KNOW IS SENSITIVE WITH REGARDS TO PREVENTING PROGRESSION OF CHRONIC DISEASE TO DIALYSIS, SO BASICALLY USING ACE OR ARC MEDICATIONS CONTROLLING BLOOD PRESSURE, KEEPING BLOOD SUGAR FROM GOING TOO HIGH, HEMOGLOBIN A1C AT A REASONABLE RATE, YOU CAN PREVENTED AN OUTCOME THAT IS REALLY BAD, WHICH IS GOING ON DIALYSIS. THIS HAS MAJOR IMPLICATIONS FOR THE HEALTH OF THE PATIENT AND FINANCIAL BURDEN ON THE HEALTH SYSTEM AND SOCIETY AS WELL AS NOT HAVING THE PATIENT QUALITY OF LIFE, DIALYSIS VERSUS NOT HAVING DIALYSIS. SO, I THINK THESE ARE ALL IMPORTANT INTERVENTIONS. ONE OF OUR CENTERS, TCC AND MID SOUTH PUBLISHED A JOURNAL SUB MEANT IN PREVENTIVE PREVENTIVE MEDICINE ON THEIR SERIES OF RESEARCH PROJECTS. MANY OF THEM FOCUSED ON SOCIOECONOMIC, CULTURAL AND ENVIRONMENTAL FACTORS. A LOT OF THE THEME WAS AROUND OBESITY AND NUTRITION AND DR. MONNIVE IS THE PRINCIPAL INVESTIGATOR OF THAT CENTER AND WE HAD A OPPORTUNITY TO SEE SOME OF THE ARTICLES BEFOREHAND. THERE WAS ALSO A PAPER THAT MY FORMER COLLEAGUE, FROM UCSF CO-AUTHORED HERE ON METHYLATION BETWEEN DIFFERENT ETHNIC RACIAL GROUPS AND REFLECTING DIFFERENT GENETIC ANCESTRY AND ENVIRONMENTAL EXPOSURES. AND THEY PUBLISHED IN A JOURNAL THAT IS IN AN OPEN-ACCESS JOURNAL AND IT IS A E-LIFE. THAT'S WHAT IT IS. AFTER HE DIDN'T GET IT INTO HIS FIRST CHOICE BECAUSE OF THE REVIEWS. BUT I THINK AND THEN JOSH WHO IS THE LEAD AUTHOR, THE SIGNIFICANTS OF THIS IS USING THESE BIOLOGICAL TOOLS TO EVALUATE WHAT WE HAVE FOR YEARS HAS BEEN STUDYING FROM A SOCIAL, BEHAVIORAL, CULTURAL PERSPECTIVE IN TERMS OF DIFFERENT ETHNIC IDENTITIES AND I THINK IT IS AN OPPORTUNITY. IT'S A STEP IN THE DIRECTION OF AN OPPORTUNITY TO COMBINE THESE METHODS TO LOOK AT CONSTRUCTS THAT UP UNTIL RECENT YEARS HAD BEEN MOSTLY IN ONE SPHERE ONLY. AND NOW I THINK WE HAVE THE OPPORTUNITY TO BE ABLE TO INTERACT AMONG THESE F ANY OF YOU ARE INTERESTED, I CAN SEND YOU THIS PAPER. NUMBER OF FUNDING OPPORTUNITY ANNOUNCEMENTS. HIV CASCADE ADDRESSING INTERVENTIONS THROUGH IN IMMIGRANT POPULATIONS BOTH RO1 AND R21. I THINK THAT THAT ONE IN PARTICULAR BROUGHT A LOT OF ATTENTION SINCE IT WAS RELEASED ON NOVEMBER 1. WE HAVE NOT YET SEEN ANY OF THE APPLICATIONS, RIGHT? I LOOK TOWARDS JENNIFER. WE RELEASED AFTER A LONG PROCESS, THE RCMI APPLICATION FUNDING OPPORTUNITY ANNOUNCEMENT ON DECEMBER 9. THESE ARE DUE NEXT MONTH. SO PRESUMABLY THE ELIGIBLE INSTITUTIONS THAT NEED TO RENEW WILL BE SUBMITTING APPLICATIONS TO US AND WE EXPECT TO MAKE THESE AWARDS THIS FISCAL YEAR WITH THE SUPPORT OF OUR OUTSTANDING REVIEW TEAM, WHICH HAS A LOT OF WORK IN THE COMING MONTHS. THERE IS THE SMALL BUSINESS SBIRSTTT FELLOWS AND THEN IN FEBRUARY, EARLIER THIS MONTH, WE RELEASED A FUNDING OPPORTUNITY ANNOUNCEMENT ON MECHANISMS OF DISPARITIES AND CHRONIC LIVER DISEASE IN CANCER. THIS WAS A JOINT EFFORT WITH THE NATIONAL CANCER INSTITUTE AND WE ALSO GOT THE ALCOHOL INSTITUTE TO BE COLLABORATIVE ON IT. AND WE LOOK FORWARD TO SEEING WHAT APPLICATIONS MAY COME IN. THIS IS DUE IN MAY, RIGHT? OKAY. WE ALSO PARTICIPATED OR COLLABORATING ON AN EFFORT FROM NIA ON HEALTH DISPARTIES AND ALZHEIMER'S DISEASE. THERE IS ANOTHER ONE THAT CAME THROUGH THAT WE TALKED ABOUT ON PALLIATIVE CARE OR SYMPTOM MANAGEMENT, RIGHT? ALONG WITH NURSING. WE HAD THE OPPORTUNITY TO ADD A STRONG, AT LEAST SOME IMPORTANT POINTS ABOUT MINORITY HEALTH AND HEALTH DISPARITIES. AND THEN WE, AS IN DECEMBER, PUT OUT THE NOTICE THAT WE WOULD BE PUBLISHING A FUNDING OPPORTUNITY ANNOUNCEMENT ON THE CENTER FOR EXCELLENCE AS A U54. AND SINCE WE WILL BE TALKING ABOUT THAT SHORTLY, I WILL DEFER TO THAT CONVERSATION. THESE ARE THE LIST OF AWARDS WE MADE FROM SEPTEMBER. IT WAS INTERESTING CLOSE OF THE YEAR BUT I WILL SAY IT WAS VERY SUCCESSFUL THANKS TO THE EFFORTS THAT OUR BUDGET OFFICER MADE TO KEEP US ON TRACK AND KEEP US -- MAKE SURE WE DIDN'T LEAVE ANY ACCESS MONEY ON THE TABLE. WE WERE ABLE TO MAKE A NUMBER OF AWARDS AND HAD, I THINK, PEOPLE ALWAYS SAY, WHAT IS YOUR PAY LINE? IT'S SORT OF ARTIFICIAL. IT WAS ABOUT 25%, BUT OUR DENOMINATOR IS SO SMALL THAT I'M NOT SURE THAT IT MEANS A WHOLE LOT. SO, WE ARE WORRIED ABOUT HOW MANY NEW INVESTIGATORS IN EARLY-STAGE INVESTIGATORS WE HAVE AND IT WAS JUST AROUND THE SAME. 25%, MAYBE A LITTLE HIGHER FOR ESTABLISHED. BUT THE REALITY IS, WITH OTHER INSTITUTES BEING AROUND 10 OR 12, NO ONE IS GOING TO QUIBBLE WHETHER SOURCE A LITTLE DIFFERENT. AS WE INCREASED THE NUMBER OF GRANTS, WE'LL SEE WHAT HAPPENS TO OUR SO-CALLED PAY LINE. AND THESE ARE OTHER COMPETITIVE ACTIONS THAT WE HAD AND AWARDS WE HAD. OBSSR HELPED CO-FUND A COUPLE OF OUR GRANTS IN THE COMMUNITY AND DISPARITIES THROUGH COMMUNITY-BASED PARTICIPATORY RESEARCH. AND FOR THIS FIRST YEAR AND IT FACILITATED US BEING ABLE TO FUND AN ADDITIONAL AWARD. THERE IS THAT ONE K99R00 AS WELL AS THE F31 GRANT THAT WE FUNDED. LET ME SPEND THE LAST FEW MINUTES HERE -- HOW ARE WE DOING ON TIME? -- ON SCIENCE. I THINK AT SOME POINT SOMEBODY SAID WHY DON'T YOU UPDATE US ON WHAT IS HAPPENING ON HEALTH DISPARITIES IN THE LAST FOUR MONTHS. I'M NOT GOING TO DO THAT. I DIDN'T REALLY HAVE THE TIME TO DO THAT BUT I'LL SHOW YOU A COUPLE OF THINGS I TALKED ABOUT. WHEN I WAS IN BOSTON EARLIER THIS MONTH, WE HAD A MEETING THAT WE HAD -- A WORK MEETING, DINNER, THE NIGHT BEFORE. AND PEOPLE WERE GOING ON AND ON ABOUT HOW BAD THINGS WERE. I'M GOING, IT'S NOT ALL BAD. RIGHT? I MEAN THERE HAS BEEN PROGRESS. IF YOU LOOK AT THE LONG VIEW HERE, THERE HAS BEEN PROGRESS. THIS IS DATA FROM THE CENSUS, AND ALTHOUGH IT IS BASED ON 2013 DATA, IT IS RECENTLY RELEASED BY THEM LAST YEAR. AND THIS IS A COMPELLING SORT OF ARGUMENT THAT SAYS THAT IF YOU'RE POOR, YOU'RE MORE LIKELY TO DIE. RIGHT? IT'S HARD TO ARGUE WITH THIS. THIS IS REALLY COLD, HARD, NO ADJUSTMENTS, JUST STRAIGHT UP. IF YOU'RE UNDER 25, YOU SEE THAT WHAT THE RELATIVE RISK OF ALL CAUSE MORTALITY IS DIRECTLY RELATED TO INCOME. NOW IT SORT OF FLATTENS OUT AS YOU GET OVER 100,000. THE MEAN HOUSEHOLD INCOME IN THE U.S. IS AROUND 50,000, I THINK. IF I'M NOT REMEMBERING INCORRECTLY. SO PEOPLE EARN 80,000 ARE SORT OF CONSIDERED MIDDLE-CLASS. POVERTY LINE IS I THINK UNDER 25 IF I'M NOT MISTAKEN BY THAT. ALTHOUGH IT'S HARD TO ALWAYS REMEMBER THE DOLLAR AMOUNT BASED ON HOW THEY CALCULATE IT. AND THEN YOU CAN SEE THE REFERENCE POINTED BEING OVER 115. WE ARE NOT LOOKING AT MILLIONAIRES LIFE EXPECTANCY, HERE. JUST THE AVERAGE PERSON. SO THIS IS INDEPENDENT OF RACE ETHNICITY. WHEN THIS ANALYSIS HAS BEEN STRATIFIED BY RACE FOR AFRICAN-AMERICANS AND WHITES, AFRICAN-AMERICANS ARE WORSE OFF AT EVERY LEVEL. THAT DATA HAS BEEN DONE. I DON'T HAVE THAT UPDATED HERE BUT THAT ANALYSIS HAS BEEN DONE. I HAVE SEEN MULTIPLE ANALYSIS OF THAT. I DON'T BELIEVE THERE IS ENOUGH DATA ON LATINOS TO BE ABLE TO DO THE SAME THING AND IT PROBABLY WOULD BE A FLATTER CURVE FOR LATINOS BECAUSE ALL MORTALITY ASSOCIATIONS FOR LATINOS BY SES DO NOT FOLLOW THE SAME PATTERN WHEN YOU USE EDUCATION. THIS IS DATA FROM THE CENSUS AS WELL, THE CDC. I DON'T KNOW IF THEY HAVE ACTUALLY PUBLISHED THIS YET BUT IT WAS PART OF A PRESENTATION THAT ELIZABETH MADE AND FROM THE NATIONAL CENTER FOR MENTAL HEALTH STATISTICS. THIS IS LIFE EXPECTANCY 2014. YOU CAN SEE FOR MEN AND WOMEN FOR WHITES, BLACKS LATINOS. THE ASIAN DATA ARE SUPPOSEDLY COMING. I HAVE BEEN TOLD THEY DON'T HAVE IT AND THE AMERICAN INDIAN AND ALASKA NATIVE AND NATIVE HAWAIIAN DATA ARE REGIONAL ANALYSIS GROUPED TOGETHER AS OPPOSED TO A NATIONAL DATASET LIKE THE OTHERS. THE FIRST POINT IS THE LATINOS HAVE THE LONGEST LIFE EXPECTANCY. AND BOTH FOR MEN AND WOMEN. SO WITHIN GENDER. LATINO WOMEN HAVE THE AVERAGE 84 YEARS. THE DECREASE THAT WE HEARD A LOT ABOUT IS REALLY AMONG WHITES AND IT'S AMONG POOR WHITES. SO IT'S ALL SOCIOECONOMIC STATUS NOT RELATED TO RACE, PARTICULARLY. AND THE ASSUMPTION OR THE DATA WOULD INDICATE THAT THIS RELATES TO MENTAL HEALTH AND SUBSTANCE USE ISSUES, PARTICULARLY IN POPULATIONS LIVING IN RURAL AREAS OR NON-URBAN AREAS. SO IT'S A PARADOX OF EPIDEMIC BECAUSE IT'S AN EPIDEMIC OR A PROBLEM THAT IS AFFECTING DISADVANTAGED POPULATIONS OF POOR WHITES, THAT IS NOT AFFECTING IN THE SAME WAY OR AT LEAST NOT BY MEASURABLE OUTCOMES THAT WE HAVE SO FAR, LATINOS AND AFRICAN-AMERICANS WHO HISTORICALLY HAD BEEN MORE LIKELY, AT LEAST BY PRIOR BEHAVIORAL STUDIES, TO HAVE PROBLEMS WITH SUBSTANCE ABUSE, FOR EXAMPLE, ALTHOUGH NOT NECESSARILY WITH MENTAL HEALTH. THIS IS THE SUMMARY OF THE PAPER THAT CAME OUT LAST YEAR USING VERY -- THIS IS ALL DONE BY ECONOMISTS. SO IT'S THEIR METHODS USING TAX RECORDS AND THEN COMBINING IT WITH THE DEATH INDEX OF THE SOCIAL SECURITY ADMINISTRATION. AND THEY SHOW THAT RICHEST VERSUS POOREST, THE TOP 1% LIVE ON AVERAGE -- THIS GOT INTO THE NEWS. REMEMBER THE TOP 1% OF INCOME COMPARED TO THE POOREST 1%. THAT GRADING IS 10 YEARS FOR WOMEN AND ALMOST 15 YEARS FOR MEN. AND THERE IS SOME EVIDENCE THAT NOT ONLY HASN'T DECREASED OVER THE LAST 20 YEARS BUT IT MAY SLIGHTLY INCREASE THIS INEQUALITY. AND SO THIS IS A METRIC FOR SOCIETY TO LOOK AT AS OOH POSED TO ANY INDIVIDUAL GROUP -- OPPOSED. AN INTERESTING POINT I MADE FROM THIS IS THE BOTTOM QUINTILE IN SOME LOCAL AREAS LIVE ON AVERAGE 4.5 YEARS LONGER THAN OTHER AREAS. AND TO PUT OR GIVE IT THE AREAS THAT YOU MAY KNOW ABOUT LIKE DETROIT COMPARED TO BIRMINGHAM, LET'S SAY. NOT TO SAY SAN FRANCISCO. SO, I THINK THAT IS A STRIKING FINDING THAT MEANS WE ARE DOING SOMETHING RIGHT IN SOME AREAS, AND THAT WE HAVE GOT TO FIGURE OUT WHAT THAT IS ABOUT. AND I THINK THIS IS A RESEARCH OF PLACE AND COMMUNITY ALONG WITH MECHANISMS. THE ECONOMISTS CONCLUDED IT WAS RELATED TO BEHAVIOR DIFFERENCES AND I'M NOT SURE I REALLY BUY THAT ARGUMENT AT ALL. BUT SO I THINK THERE IS A CHALLENGE FOR US, THE SCIENTIFIC COMMUNITY TOW LOOK AT THIS. SOME HIGHLIGHTS FROM OUR GRANTEES. THIS IS A PAPER THAT WAS OUT OF THE GROUP THAT LISA BARNS LEADS IN CHICAGO AND ASSOCIATION OF COGNITIVE ACTIVITY WITH BLACKS AND WHITES WITH HIV. AND OLDER PERSONS, THE WHOLE AREA OF COGNITIO OF COURSE HAS GOTTEN A LOT OF ATTENTION IN RECENT YEARS. LOTS OF NEW FUNDING IN ADDRESSING ISSUES AROUND ALZHEIMER'S. BUT IT'S REALLY A BIG SPECTRUM, COGNITION AND COGNITIVE FUNCTION. THERE IS KIND OF A CLINICALLY, I WOULD SAY THAT I FELT IT AS A WALL NOW. WE HIT A WALL WHEN WE GET TO 80. SO THE OLD 65 IS REALLY FROM THE 30s. THAT'S WHEN PEOPLE USED TO KIND OF BE BURNED-OUT AND RETIRED. NOW IT'S LIKE 80. SO YOU RETIRE AT 65, YOU STILL GOT A LOT OF GOOD YEARS AHEAD. BUT WHEN YOU GET TO 80, BY THE TIME YOU'RE 85, ABOUT HALF OF THE POPULATION HAS MEASURABLE COGNITIVE IMPAIRMENT. IT DOESN'T MEAN YOU'RE DEMENTED. IT JUST MEANS YOU HAVE SOME COGNITIVE DEFECTS, SOME MINOR THINGS. AND OF COURSE THE RATE OF ACTUAL DEMENTIA GOES UP. AND THIS IS A BIG AREA OF INTEREST IN RESEARCH. HIV IS AN INTERESTING MODEL IN THAT A LOT OF THESE PROCESSES SEEM TO BE ACCELERATED AND IN THE PREANTI-RETROVIRAL THERAPY, WE WOULD SEE EARLY ON DEMENTIA IN YOUNGER ADULTS. AND A VARIETY OF CENTRAL NERVOUS SYSTEM COMPLICATIONS. BUT THIS IS A COMPARISON, ONE OF THE UNIQUE STUDIES THAT HAS SUFFICIENT OLDER ADULTS WHO ARE AFRICAN-AMERICAN ENROLLED IN A PROSPECTIVE STUDY AND LOOKING AT THE ASSOCIATION OF GLOBAL COGNITION WITH MEMORY WORKING MEM SPREE PERCEPTUAL SPEED AMONG AFRICAN-AMERICANS AND WHITES. UNDERSTANDING WHAT THESE MECHANISMS ARE AND HOW PEOPLE FUNCTION, I THINK IS IN THESE SORT OF VERTICAL STUD CEASE IMPORTANT AS WELL AS LOOKING AT MORE BIGGER POPULATION STUDIES. THERE IS ANOTHER PUBLISHED PAPER ON STRESS MANAGEMENT AND DIABETES OUTCOMES FOR LATINOS. AND IT'S A MODEL I'M USED TO AS A FORMER COLLEAGUE OF MINE DID A SIMILAR KIND OF RESEARCH IN WOMEN WHO WERE SURVIVORS OF BREAST CANCER. SO IF YOU DO A BEHAVIORAL STRESS MANAGEMENT INTERVENTION IN A VULNERABLE GROUP, IN THIS CASE, PATIENTS WITH DIABETES, YOU CAN MAKE OR YOU CAN SHOW, AS THEY DID, IMPROVEMENTS IN MENTAL HEALTH OUTCOMES IN SEVERAL-REPORTED HEALTH CENTERS. SO QUALITY OF LIFE MEASURES IMPROVED. IN THIS STUDY, THEY DID NOT SHOW A DIFFERENCE IN PHYSICAL LONG CALL MEASURES OF HEMOGLOBIN A1C. SO IT WOULD BE GREATER IF YOU SHOW YOU'RE A1Z BETTER. BECAUSE IF YOU SAY YOUR STRESS IS REDUCED AND YOU FEEL BETTER ISSUES YOU MAY DO BETTER SELF-CARE AND END UP WITH A BETTER HEMOGLOBIN A1C. THAT WASN'T THE CASE. NOW IT MAY NOT HAVE BEEN LARGE ENOUGH TO SHOW THAT OR LONG ENOUGH OF A FOLLOW-UP BUT IT DOES -- WE SHOULD AT LEAST IN A PLAUSIBLE WAY TO IMPROVE THE PHYSIOLOGIC OUTCOMES AND IMPROVE SOMEONE'S HEALTH. AS WELL AS MAKE PEOPLE FEEL BETTER WHICH IS AFTER ALL IN AND OF ITSELF IMPORTANT. AND THEN THE MODEL OF EARLY CHILDHOOD ADVERSE EVENTS LEADING TO CHRONIC CONDITIONS IN ADULTS IS AN IMPORTANT ONE THAT WE HAVE EMPHASIZED IN A VARIETY OF SETTINGS. THIS IS WORK FROM AGAIN ONE OF OUR CENTERS IN CHILDHOOD ABUSE BEING PREDICTIVE OF CARDIOVASCULAR OUTCOMES. THESE ARE LOOKING AT ADULT HYPERTENSION WHO COMPLETED RETROSPECTIVELY CHILDHOOD TRAUMA QUESTIONNAIRE AND THEN LINKED TO SLEEP DISTURBANCES AND DIAGNOSES OF HYPERTENSION. A LOT OF THINGS LEADING TO HYPERTENSION, PERHAPS SLEEP IS AN AREA THAT AS WE HAVE SHOWN -- WE ARE INTERESTED IN FURTHER EXPLORING THAT AND WE'LL HAVE A FUNDING OPPORTUNITY ON THIS SOON. BUT THIS IS AN IMPORTANT MODEL TO DO MORE RESEARCH ON. NO RESEARCH IS PERFECT. THIS IS RETROSPECTIVE RECALL OF WHAT HAPPENS AS OPPOSED TO ANYTHING PROSPECTIVE OR RECORDS THAT GET LISTED. BUT THINK OF A VARIETY OF WAYS THESE KINDS OF MODELS CAN BE TESTED. AND WE USE THIS. ARE THERE OTHER EVENTS WE WOULD BE INTERESTED IN LOOKING AT IN TESTING THIS HYPOTHESIS EVEN THOUGH THERE IS SOME LIMITATIONS TO THIS KIND OF METHOD. IMPORTANT CONTRIBUTION IN LINK ING IT APO1 HAS GOT EP A LOT OF PRESS AND TRACTION. IT'S A HIGHER RISK FOR DEVELOPING CHRONIC KIDNEY DISEASE. IT'S A GENE THAT IS FOUND EXCLUSIVELY IN INDIVIDUALS WITH AFRICAN DECENT. IT HAS NOT YET BEEN THROUGHLY STUDIED IN AFRICANS WITH ADD MIXTURE ALTHOUGH WE HOPE THAT WILL HAPPEN AS WE ARE COLLABORATING ON A NETWORK PROJECT AND THIS ONE, REALLY LOOKED AT MORTALITY RELATED TO THE AFRICAN-AMERICAN STUDY OF KIDNEY DISEASE AND HYPERTENSION, WHICH RANDOMIZED PATIENTS TO SORT OF STRICTER BLOOD PRESSURE CONTROL VERSUS STANDARD CONTROL. AND SHOWED THOSE WITH APOE1 HAD MORE BENEFIT WHEN THEIR BLOOD PRESSURE WAS UNDER STRICTER CONTROL. SO THE LESSON HERE WOULD BE THAT IF YOU HAVE THE GENE, IT'S NOT LIKE YOU'RE DESTINED TO GO TO END STAGE RENAL DISEASE. THAT'S NOT THE LESSON. AND THIS IS THE MISTAKE PEOPLE SAY. YOU HAVE APOE1, YOU'RE DONE. YOU'RE GOING TO DIALYSIS. IT REALLY IS AN INCREASED RISK FOR GOING ON TO CHRONIC KIDNEY DISEASE AND IF YOU HAPPEN TO HAVE ELEVATED BLOOD PRESSURE AND/OR DIABETES THAT INCREASED RISK IS REALLY GOING O GO WAY UP.% BUT YOU STILL HAVE TWO MODIFIABLE RISKS. BLOOD PRESSURE AND CHRONIC KIDNEY DISEASE THAT IF YOU TREAT THEM, IN THIS CASE, BLOOD PRESSURE, YOU WILL TEMPER OR ABLATE THE PROGRESSION TO CHRONIC KIDNEY DISEASE. WE KNOW HOW TO AT LEAST HAVE IMPACT ON THAT UNLIKE MANY OTHER THINGS IN MEDICAL CARE. SO, IT GIVES US AGAIN AN AREA OF GREAT INTEREST AND IMPORTANCE. PERCEIVED DISCRIMINATION IN MENTAL HEALTH SUBSTANCE ABUSE TREATMENT SERVICES IN OVER 1000 ADULTS INDICATED VISITS IN THE CALIFORNIA QUALITY OF LIFE SURVEY. AND 4% OF THE ADULTS REPORTED DISCRIMINATION DURING THEIR MENTAL HEALTH SUBSTANCE ABUSE VISITS AND UNINSURED PATIENTS WERE MORE LIKELY TO DO SO. 4 CONSPIRACY RELATIVELY LOW SO YOU WONDER WHETHER -- CAN WE MAKE THAT ZERO. AND BY FAR AND AWAY, THE MOST COMMON CAUSE WAS FOR RELATED TO RACE AMONG AFRICAN-AMERICANS AND LATINOS AND ALSO FOR WHITES THAT PERCEPTION OF DISCRIMINATION WAS REALLY INSURANCE. SO IF YOU ACTUALLY LOOK AT THE KEISER FAMILY FOUNDATION UPDATED A SURVEY THEY HAD DONE IN EARLY PART OF THE CENTURY, 21ST CENTURY ON PERCEIVED DISCRIMINATION IN GENERAL AND IN HEALTH CARE. AND THEY PUBLISHED IT IN OCTOBER OF 2015, A REPORT ON THIS. AND SO, IF YOU ASK PEOPLE IN GENERAL, DO YOU OR YOUR FAMILY OR PEOPLE YOU KNOW HAD EXPERIENCES WITH DISCRIMINATION IN GENERAL IN SOCIETY AND IN HEALTH CARE AS A SECONDARY QUESTION? THE RATES WERE CLOSER TO 15% AS I'M REMEMBERING FOR LATINOS AND AFRICAN-AMERICANS. IT WOULD BE HIGHER FOR BLACKS OR LATINOS AND THEN WHITES WAS ABOUT 5%. SO I THINK THE 4% SEEMS ON THE LOW SIDE IN THIS CASE. AND THIS WAS FROM UNCONSCIOUS BIAS. IT'S NOT A COMPLETE SUMMARY BUT ESSENTIALLY IT IS OUT OF SOUTH DAKOTA AND CLINICIANS IN THE EMERGENCY ROOM HAD A PREFERENCE FOR WHITE CHILDREN. SO USING THE IMPLICIT BIAS TEST. NOT UNEXPECTED. AND THAT WOULD BE THE CASE GIVEN MOST OF THE CLINICIANS ARE LIKELY TO BE WHITE. AND UNFORTUNATELY, THE GREATER NUMBER OF AMERICAN INDIAN CHILDREN THEY SAW, THE MORE CHALLENGING THAT THEY SAW THE AMERICAN INDIAN CHILDREN AND THEIR CAREGIVERS AS LESS COMPLIANT. SO THE ROLE OF WHAT IMPLICIT BIAS MAY PLAY IN HEALTH CARE IN PROVIDING HEALTH CARE TO MINORITY GROUPS, IS A LESSON FROM THIS PAPER. SO IF WE COULD DO THIS, WOULD WE DECREASE INFANT MORALITY AND MORBIDITY? THIS IS PUBLISHED IN THE AMERICAN JOURNAL OF PUBLIC HEALTH. RAISE MINIMUM WAAGE I CAN'T SAY I WENT THROUGH THIS PAPER IN DETAIL SO I CAN'T REALLY COMMENT. I THINK IF I HAD REVIEWED IT, I œWOULD HAVE RAISED A LOT OF CONCERNS ABOUT SORT OF THE STATES THAT HAVE HIGHER MINIMUM WAAGE TEND TO DO A BETTER JOB OF CARING FOR THEIR POOR PATIENTS. IN URBAN AREAS. SO THE CONTEXT OF THE AREAS THAT REALLY DO A BETTER JOB OF CARING FOR THEIR MOST VULNERABLE, THE SAME DOLLARS HAVE BETTER MINIMUM WAAGE AND THE CONFOUNDERS ARE SIGNIFICANT. BUT IT IS THERE. AND WHETHER OR NOT IF WE JUST ACROSS-THE-BOARD RAISE MINIMUM WAAGE, WHICH AS YOU KNOW, HAS BEEN AN ISSUE THAT HAS BEEN DISCUSSED IN SOME CIRCLES IN THE LAST YEAR IN SOME COMMUNITIES. AND THEY RAISED IT TO OR PLAN TO RAISE IT TO $15 OVER A PERIOD OF A SHORT TIME. WILL WE IN PACT ON INFANT MORTALITY AND LOW BIRTH WEIGHT. USING PEERS TO SUPPORT ADOLESCENT OBESITY INTERVENTION AND AGAIN A MODEL THAT HAS BEEN SUCCESSFULLY USED IN A NUMBER OF RESEARCH RATHER THAN HAVE INTERVENTIONS THAT ARE RELATED TO PROFESSIONALS ADMINISTERING AND USING PEERS. AND I THINK THIS IS A MODEL THAT SHOULD BE ABLE TO WORK WITH THE BEHAVIOR CHANGE IN OTHER ASPECTS AS WELL. LET ME FINISH WITH A COUPLE OF COMMENTS ON OUR WORK. SO WITH ERIC'S HELP, WE HAVE -- HE HAS ONLY STARTED SEPTEMBER, AT THE END OF SEPTEMBER. WE ARE CONTINUING TO LOOK AT SOME ANALYSIS OF AVAILABLE SECONDARY DATA. WE HAVE COMPLETED ANALYSIS OF THE NATIONAL HEALTH INTERVIEW SURVEY LOOKING AT GENDER, ACONSULTERATION, EDUCATION AND CIGARETTE SMOKING BY LATINO NATIONAL BACKGROUND. IF YOU'RE MORE CULTUREIATED AND BEING MORE EDUCATEED, REDUCED ODDS OF SMOKING AMONG MEN. THIS IS MOST ROBUST AMONG AMERICANS. IT'S HARD TO CONCLUDE THAT'S THE CASE IN ALL GROUPS. IT WAS THE CASE AMONG MEXICAN, THE LARGEST GROUP AND OVER ALL IT WAS SIGNIFICANT BUT MAY BE DRIVEN BY THE MEXICAN FINDING. THE IDEA THERE IS A BELIEF OUT THERE, AND I SAY THAT, I'M NOT SARCASTIC, THANK YOU IF YOU BECOME MORE CULTRATED, YOUR HEALTH GETS WORSE. SO THE IDEA THAT LATINOS DO BETTER BECAUSE THEY HAVEN'T TAKEN UP ALL OUR BAD HABITS YET AND ONCE THEY GET HERE THEY WILL TAKE UP OUR BAD HABITS AND THEIR HEALTH GETS WORSE. I THINK THE CHALLENGE IS, SHOW ME THE DATA T IS TRUE FOR SOME THINGS. WE SEE IT IN WOMEN DRINK MORE ALCOHOL. THEY SMOKE MORE. BUT IN MOST CASES, I DON'T THINK THERE IS ENOUGH DATA AND I THINK THIS IS A SECOND TIME WE HAVE DONE ANALYSIS OF SECONDARY DATA SHOWING THAT YOU CAN TOTALLY BLUNTED THIS POTENTIAL EFFECT BY HAVING HIGHER LEVEL OF EDUCATION. SO THAT THE IMMIGRANTS WHO REMAIN LET'S SAY LOW IN CONSULTERATION BUT DO NOT ADVANCE EDUCATIONALLY, ARE THE ONES MOST VULNERABLE ONE IS ON HEALTH IT AND STRATEGIES ON MINORITY HEALTH AND HEALTH DISPARITIES AND REGINA JAMES AND COURTNEY ARE HELPING TO SPEARHEAD THIS AND I LOOK FORWARD TO SEEING THAT GET ON MY CALENDAR. AND THEN -- >> [ OFF MIC ] >> I'LL DOUBLE CHECK. AND THEN, THERE IS A WORKSHOP ON STRUCTURAL RACISM AND CULTURAL COMPETENCE OR STRUCTURAL COMPETENCE, IMPACT ON MINORITY HEALTH AND HEALTH DISPARITIES, THE OFFICE OF MINORITY HEALTH IS A PARTNER ON THAT AND I SEE DEREK IN THE BACK AND WE LOOK FORWARD TO SEEING THAT MATERIALIZE WITH THE REST OF THE TEAM AT NIMHD WORKING ON THIS. WE AGREED TO WORK WITH NIA AND NICHD ON A INCLUSION THROUGH THE LIFE COURSE. I THINK JENNIFER IS INVOLVED IN THAT AND ALTHOUGH WE DON'T HAVE A MINORITY HEALTH HEALTH DISPARITIES FOCUS, WE WILL PARTICIPATE AND HAVE SOME PRESENTATION ON IT. AND WE RECENTLY HAD A REQUEST FROM NCI THIS IS MORE OF A TASK FORCE TO LOOK AT ISSUES AROUND SMALL POPULATIONS. IT IS ACTUALLY A NATIONAL ACADEMY OF MEDICINE INITIATIVE AND WE AGREED TO PARTICIPATE IN THAT AS WELL. SO, WE WILL CONTINUE TO LOOK FOR THESE KINDS OF OPPORTUNITIES. THERE ARE A COUPLE OF OTHER WORKSHOP IDEAS THAT HAVE FILTERED THROUGH OUR SCIENTIFIC DISCUSSIONS BUT I WANT TO GET THROUGH THESE TWO PROPOSED ONES BEFORE WE TAKE ON ANOTHER ONE. AND THEN FINALLY, THE INTRAMURAL PROGRAM. I MENTIONED EARLIER 2.2% OF OUR BUDGET. I STILL HAVE THIS ON OUR PLANS. I'M IN THE PROCESS HOPEFULLY OF FINALIZING RECRUITMENT OF A SCIENTIFIC DIRECTOR, MAYBE BY THE JUNE COUNCIL WE WILL HAVE THAT COMPLETED. WE HAVE NETWORKED WITH OTHER DIVISIONS OF INTRAMURAL RESEARCH. WE ARE WORKING WITH NCI ON A COUPLE OF FRONTS, CALVIN TROY, OUR TENURED TRACK INVESTIGATOR MEETS WITH THEM. ERIC AND I PARTICIPATE IN THEIR TOBACCO WORK GROUP. STEVEN WHO IS THE DIRECTOR OF THE POPULATION SCIENCES, HAS BEEN VERY HELPFUL IN AN ADVISORY EXITY WITH US. -- CAPACITY WITH US. AND AS WE GET ESTABLISHED, WE'LL BE PARTICULARLY HELPFUL IN A VARIETY OF ASPECTS. NATIONAL INSTITUTE ON AGING HAS A STRONG PRESENCE IN THE BALTIMORE LONGITUDINAL STUDY ON AGING AND THE HANDLE STUDY THAT MICHELLE EVANS LEADS AND LOOKING FORWARD TO FINDING WAYS TO INTERACT AND CONNECT WITH HER. A COUPLE OF HER POSTDOCS HAVE ONE PRESENTED AND ONE WILL PRESENT AT OUR INTRAMURAL RESEARCH CONFERENCE AND MICHELLE HAS AS WELL. ANN SUMNER WHO IS SENIOR ESTABLISHED INVESTIGATOR AT NIDDK IS VERY MUCH ENGAGED WITH NIMHD'S INTRAMURAL PROGRAM AS A PARTICIPANT IN OUR SEMINARS AND A MENTOR. AND I THINK THAT WE LOOK FORWARD TO CONTINUING THAT. ANN IS AN ENDOCRINOLOGIST AND HAS A STUDY OF AFRICAN IMMIGRANTS IN THE DC AREA. AT NICHD, AS THEY TAKE ON THE NEW DIRECTION, WE WILL ALSO BE LOOKING TO INTERACT WITH THEM AND I HAVE HAD SOME INTERACTIONS WITH A COUPLE OF THEIR INVESTIGATORS ON POPULATION SCIENCE AND WE -- ONE OF THEIR NEW HIRES IS ALSO AFFILIATED WITH US. ENVIRONMENTAL HEALTH, WHICH IS IN NORTH CAROLINA, WE HELP SUPPORT RECRUITMENT OF NEW TENURED TRACK INVESTIGATOR, JACKSON, WHO IS INTERESTED IN SLEEP AND SHE PRESENTED AT ONE OF OUR SEMINARS. AND LAST IS NHLBI, WHERE I'M BASED AS A DIRECTOR OF AN INSTITUTE I CAN'T BE IN MY OWN INSTITUTE. IT'S A PERCEIVED CONFLICT. NHLBI, THOUGH, IS INTERESTED IN UPON DIDDING MORE OF A POPULATION SCIENCE PRESENCE. AND SO, WE LOOK FORWARD TO WORKING WITH BOP BALL BAN, THEIR SCIENTIFIC DIRECTOR AND SHE PLANNING TO RECRUIT TWO SENIOR PEOPLE TO COME TO NIH AS NHLBI AND INTEREST MURAL INVESTIGATORS, AND WE WILL CO-LOCATE IN THE SAME SPACE AND HOPEFULLY FIND WAYS TO INTERACT AND BE SYNERGISTIC AS WE ESTABLISH AND EXPAND OUR INTRAMURAL PROGRAM. THEIR CURRENT POPULATION SCIENCE PROGRAM IS FRAMINHAM, WHICH IS NOT HERE. SO, YOU CAN IMAGINE THEY ARE INTERESTED IN DEVELOPING THIS AND ERIC GIBBONS, WE MET AND HAVE BEEN VERY SUPPORTIVE OF THIS. SO WE LOOK FORWARD TO SEEING THIS DEVELOP. SO, THAT IS IT. [ APPLAUSE ] I THINK -- I WENT LONG BUT WE ARE STILL ON SCHEDULE. SO WE HAVE TIME FOR A FEW QUESTIONS. >> I WANTED TO COMMENT ON THAT SLIDE YOU SHOWED ABOUT THE RELATIONSHIP AND THE RELATIVE RISK OF ALL CAUSE MORTALITY AND INCOME. I REALLY THINK THAT THAT IS REALLY VERY POWERFUL OF A WAY OF COMMUNICATING ABOUT THE IMPORTANCE OF HEALTH EQUITY. I HAVE ANOTHER SLIDE THAT PROBABLY YOU COULD USE, WHICH I THINK COMPLIMENTS THAT SLIDE THAT I USE FOR MY LECTURE TO WARN STUDENTS ABOUT HEALTH EQUITY. TO TALK ABOUT SORT OF COMMUNICATING TO FUTURE MILLIONAIRES WHO PROBABLY WOULD BE THE PEOPLE WE HAVE TO FIGHT IN ORDER TO MAKE SURE WE SUPPORT THIS ISSUE. AND IT IS A SLIDE THAT SHOWS THE RELATIONSHIP BETWEEN RACE AND ETHNICITY AND MEDIAN HOUSEHOLD INCOME IN THE UNITED STATES. AND THE WHAT YOU WOULD FIND IS THAT IT IS UNBELIEVABLE. IT'S MIND BLOWING. IT'S ALMOST 20 TIMES. WHITES HAVE ALMOST 20 TIMES MORE MEDIAN HOUSEHOLD INCOME COMPARED TO BLACKS. SO WHEN YOU COMBINE THAT WITH THE SLIDE THANK YOU SHOWED THAT DIRECTLY SHOWS THE RELATIONSHIP BETWEEN INCOME AND MORTALITY, YOU CAN SEE CLEARLY THAT THE RELATIONSHIP BETWEEN RACE AND WHAT IS HAPPENING WITH ETHNICITY AND HEALTH CARE. SO I WANTED TO -- I'M HAPPY TO SEND YOU THAT SLIDE BECAUSE IT WAS GIVEN TO ME BY ONE OF THE WARDEN STUDENTS ACTUALLY WHO SAID YOU SHOULD SHOW THIS. >> I TOTALLY AGREE. THERE ARE TWO COMMENS I WOULD MAKE ON THIS. ONE IS THE RELATIONSHIP IS NOT AS ROBUST IN OTHER RACE ETHNIC GROUPS IN UNDERSTANDING WHY BECOMES AN IMPORTANT SCIENTIFIC QUESTION. AND TWO, WE LIVE IN A SOCIETY IN A ECONOMIC SYSTEM THAT GENERATES INEQUALITY. SO, RATHER THAN FIGHT, WE NEED TO COLLABORATE AND MAKE SURE THAT WE HAVE TO ACKNOWLEDGE. WHAT CAN WE DO ABOUT IT? WE ARE NEVER GOING TO MAKE IT GO COMPLETELY AWAY. I WANT TO BE OPTIMISTIC. I ALWAYS AM. BUT I WILL START WITH THAT ASSUMPTION. AND WHAT CAN WE DO TO MELIORATE AND ADDRESS THIS INEQUALITY? BECAUSE IT WILL BE GENERATED. WE FAILED IN THE EXPERIMENTS TO HAVE OTHER SOCIAL ECONOMIC SYSTEMS THAT STARTED OFF BY SAYING WE ARE NOT GONG TO HAVE THIS INEQUALITY. BECAUSE THEY FAILED TO BE œSUSTAINABLE AT LEAST IN THE 20TH CENTURY EXPERIMENTS THAT WERE CONDUCTED. SO THAT IS THE DIRECTION WE NEED TO MOVE ON. AND THAT IS WHY I'M SO INTRIGUED BY, WHAT ARE SOME AREAS DOING WELL TO HAVE THEIR MOST VULNERABLE GROUPS DO BETTER? AND THAT IS WHAT THE LESSON WE HAVE TO REALLY FIGURE OUT. AND THEN FLATTEN THAT RELATIONSHIP AS MUCH AS POSSIBLE. SEND ME THE SLIDE, PLEASE. FERNANDO? >> ONE OF THE THINGS THAT IS HAPPENING AND ONE AREA, AS YOU BRING UP THE ISSUE OF STRESS, AND FOR LATINO CHILDREN RIGHT NOW THE STRESS IN PLACES LIKE CALIFORNIA IS THE IMMIGRATION POLICY CHANGES. I HAVE DATA FROM THE ONE OF THE CENTERS HERE IN WASHINGTON THAT DOES IMMIGRATION AND THEY REPORT THAT THEY ESTIMATE THAT 17% OF ALL CHILDREN IN CALIFORNIA HAVE ONE UNDOCUMENTED PARENT. IN TEXAS IT'S LIKE 13%. SO WE HAVE LARGE STATES WHERE PEOPLE ARE DOING STUDIES ON LATINO KIDS AND THE KIND OF STRESS THAT WILL BE ADDED TO THOSE KIDS, AND IN ADDITION TO THE KIDS THAT DON'T HAVE UNDOCUMENTED PARENTS BUT ARE IMMIGRANTS, I WONDER HOW WE AS AN INSTITUTE AND RESEARCHERS OUT IN THE FIELD SHOULD BE THINKING ABOUT HOW TO MEASURE THIS? THIS IS AN EXPERIMENT AS SUCH, A NATURAL EXPERIMENT, THAT WILL HAPPEN. I'M AFRAID THAT IT'S IMPORTANT FOR US TO HAVE REAL FACTS ABOUT WHAT CHANGES ARE. SO I WONDERED WHAT YOU THOUGHT ABOUT THAT? >> YOU KNOW, IT'S GOT TO BE DONE. WE GOT TO STUDY IT. WE HAVE TO FIGURE OUT HOW TO DOCUMENT IT AND THEN ADDRESS WAYS TO DECREASE. I THINK -- I WOULD PUT TO THE IN THE PERSPECTIVE OF THE BROAD TOPIC OF WHAT HAPPENS AT AGE ZERO-3 OR -9 TO WHATEVER 9 MONTHS, FROM CONCEPTION TO -- BECAUSE IT'S A VERY VULNERABLE PERIOD AND THINGS THAT WE HAD NO IDEA WERE SO IMPORTANT FROM -- FOOD SECURITY, FAMILY COHESION, SAFE COMMUNITIES, SCHOOLS THAT ACTUALLY TRY TO TEACH, A VARIETY OF EARLY EDUCATION. HOW IMPORTANT THAT IS IN NOT JUST PREVENTING CHILDHOOD DYSFUNCTION OR MENTAL HEALTH ISSUES OR ATTENTION DEFICIT ISSUES, BUT ALSO ADULT CONDITIONS AND THE PLASTICITY OF THE BRAIN IN THAT EARLY PERIOD OF TIME IS MAXIMIZED. SO I THINK THAT HOW DO YOU MEASURE STRESS? IT'S ALWAYS WAS A DEBATE AND REMEMBER LYNNE TOLD ME ONCE WHEN I WAS A RESEARCH FELLOW, YOU FIND MANY STUDIES ON ONE SIDE AS IS THE OTHER. SO IT JUST TELLS YOU THAT WE DON'T REALLY KNOW WHAT WE ARE DOING WITH MEASUREMENT. I THINK WE MADE HUGE ADVANCES IN BEING ABLE TO SEE NOT JUST METICALLY BUT PHYSIOLOGICAL RESPONSES THAT CAN HELP INFORM WHAT THESE THINGS ARE DOING. AND IMMIGRATION STRESS IS CERTAINLY IN THE DISCUSSION SCIENTIFICALLY AS WELL AS NOW THROUGH THIS SPHERE OF WHA HAPPENS WITH DOCUMENTATION STATUS AND HOW CHILDREN THEN ABSORB THAT FROM THEIR PARENTS. NOT A DIRECT WAY, MAYBE BECAUSE THEY ARE AT THEIR LEVEL BUT I THINK THEY WILL REFLECT THEIR SURROUNDINGS. WE KNOW HOW CRITICAL, MAYBE WE HAVE ALWAYS KNOWN BUT PEOPLE NOW KNOW THERE IS ABUNDANT EVIDENCED TO SUPPORT THAT. SO WE ENCOURAGE THAT WE FIGURE OUT WAYS TO MONITOR THAT. >> FIRST OF ALL, I WANT TO SAY THANK YOU FOR GREAT PRESENTATION TODAY AND ALSO I'M EXTREMELY HAPPY IN THE FIRST YEAR, YEAR AND A HALF OF BEING HERE, YOU HAVE GOTTEN OUT INTO THE COUNTRY, LET PEOPLE KNOW WHAT NIMHD IS DOING, AND THEN ALSO AT LEAST WHEN YOU'RE AT OUR PLACE, YOU CHALLENGE PEOPLE TO REALLY THINK ABOUT HEALTH DISPARITIES AND THE SCIENCE THAT CAN BE DONE TO HELP INFORM WHAT WE ARE DOING. LOOK AT SOME OF THOSE STUDIES YOU SHOWED AND I'M DE-- THE KIDNEY ONES OBVIOUSLY, THEY SHOW THAT IF WE BACK UP THE DATA WITH THE SCIENTIFIC INFORMATION AND RELATED TO HEALTH DISPARITIES, THAT IT SHOULD BE ABLE TO GET OUT THERE. I KNOW YOU WANT TO DISSEMINATE THE DATA, THAT IS PART OF ONE OF THE THINGS WE CHANGE AT THE CENTERS. BUT I THINK IT'S AN OPPORTUNITY FOR US TO KEEP DOING THIS IN A GOOD WAY. AND THANK YOU YOU AND THE STAFF HERE FOR BEING ABLE TO DO THAT BECAUSE IT COULD BE A GAME CHANGER IN THIS WAY AND IN THE CURRENT ENVIRONMENT, PROBABLY EXTREMELY IMPORTANT WITH WHAT WE ARE JUST DISCUSSING ON MANY DIFFERENT LEVELS. >> WE ARE GOING TO BRING YOU BACK, EDDIE. [ LAUGHS ] YOU JUST SAID THAT BECAUSE I VISITED MAZE OH, RIGHT? >> NO. >> SO THANK YOU. -- MAYO -- I THINK IT'S IMPORTANT TO KEEP THE CONSIST ENT MESSAGE. WE HOPE YOU WILL CARRY THAT IN YOUR OWN SPHERES AS WELL. >> JUST WANTED TO REITERATE FERNANDO'S MESSAGE OF URGENCY TO ASSESS THE IMPACT OF THE IMMIGRATION POLICIES IN OUR CHILDREN. JUST LAST WEEK ALONE AT THE UC SD MOTHER CHILD ADOLESCENT HIV PROGRAM, THREE PATIENTS WERE TAKEN BY ICE AND DEPORTED. FOR TWO FAMILIES WHO HAVE YOUNG CHILDREN, THEY WERE REFERRED TO THE FOSTER CARE SYSTEM. IMMIGRANT FAMILIES WHERE THEY DON'T -- WHERE THEY THINK OF GIVING CUSTODY TO A GOD MOTHER WITHOUT ANY OF THE PROPER DOCUMENTATION, WITHOUT ANY POWERS OF ATTORNEY, THE LEGAL GUARDIANSHIP COMES INTO QUESTION. SO IT'S A SMALL SAMPLE SIZE OF THREE. I ANTICIPATE THAT IT MIGHT GET WORSE. IT IS NOT LIMITED JUST TO MEXICAN FAMILIES BUT IT COULD APPLY TO MIDDLE EASTERN FAMILIES, REFUGEES AS WELL. THE AMERICAN PEDIATRIC'S ASSOCIATION ALSO ANNOUNCED THEIR CONCERN ABOUT THE EFFECTS OF CHRONIC STRESS AND ANXIETY ON CHILDREN WHO ARE AT RISK. SO I THINK WE SHOULD URGENTLY CONSIDER WHAT KIND OF PROACTIVE ACTION OR POSITION OR MESSAGE WE WOULD LIKE TO COMMUNICATE. >> THANK YOU. I'LL DEFER TO YOU ON THAT. I THINK WE BETTER STOP. WE'LL TAKE A BREAK AND THEN WE'LL COME BACK -- I SEE JOE IN THE ROOM. SO WE'LL START UP AGAIN WITH DR. SELBY. THANK YOU. >> WE HAVE THE PRIVILEGE OF HAVING THREE PRESENTERS, ONE IS OUR SCIENTIST WHO WILL TELL US LATER ABOUT AMERICAN INDIAN AND HEALTH AND CANCER. BUT FIRST WE HAVE JOE SELBY. JOE IS THE DIRECTOR OF THE PCORI RESEARCH INSTITUTE. JOE, I HAVE KNOWN FOR 20 PLUS YEARS. HE WAS A LEADING SCIENTIST AT THE NORTHERN CALIFORNIA KEISER DIVISION OF RESEARCH. PUBLISHED SOME SEMINOLE STUDIES ON CARDIOVASCULAR DISEASE. ONE OF THE FIRST IF NOT THE FIRST, CASE CONTROL STUDY THAT SHOWED THAT USING SCREENING SIGMOIDOSCOPY DECREASED MORTALITY FROM COLORECTAL CANCER BACK IN THE EARLY 90s. HE WAS AN INCREDIBLY SUCCESSFUL INVESTIGATOR AS WELL AS MENTOR AND RAN A RESEARCH OPERATION AT DOR. BECAME THE DIRECTOR OF IT AND WAS VERY SUCCESSFUL IN THAT. WE INTERACTED WITH HIM ON MANY OCCASIONS FROM UCSF WHEN WE STARTED OUR MEDICAL EFFECTIVE RESEARCH CENTER FOR DIVERSE POPULATIONS. GENE WASHINGTON AND I HAD AN INFORMAL COLLABORATION ALLIANCE WITH JOE AND COLLEAGUES AT KEISER. AND THIS FLOURISHED OVER THE COURSE OF MANY YEARS, DRIVEN OFTEN BY INDIVIDUAL RESEARCHERS. AND HE THEN RETIRED FROM KEISER, SOMEHOW OR ANOTHER GOT RECRUITED BY DR. WASHINGTON. IT'S A SMALL WORLD TO, COME TO WASHINGTON, TO COME TO DC, TO RUN PCRI. AND JOE WILL TELL US ABOUT PCRI I THINK THERE ARE MANY POTENTIAL OPPORTUNITIES FOR NIMHD AND NIH IN GENERAL. JOE, WITHOUT FURTHER ADIEU. >> THANK YOU. THANK YOU VERY MUCH. THANK YOU FOR THE INVITATION. IT'S REALLY GOOD TO BE HERE AND MEET MANY OF YOU OR TO SEE SOME OF YOU WHO I HAVE MET BEFORE AND ELISEIO IS RIGHT IN EVERYTHING HE SAID BUT ONE OF THE THINGS I MENTIONED IS FINDING WAYS FOR PCRI, PATIENT SEVEN. ED OUTCOMES RESEARCH INSTITUTE, TO COLLABORATE MORE WITH NIMHD AND I CAN SAY THAT WE HAVE ALWAYS BEEN INTERESTED IN THESE KINDS OF INTER-INSTITUTIONAL COLLABORATIVE RESEARCH STUDIES BECAUSE WE ARE SUCH A GENERALLY-ORIENTED, THAT A LITTLE EXPERTISE FROM AN INSTITUTE THAT IS FOCUSES ON A PARTICULAR DISCIPLINE OR TYPE OF RESEARCH, PARTICULAR CONDITION, REALLY ADDS A LOT TO WHAT WE DO. SO THE INVITATION IS OPEN. I KNOW WE HAD A NUMBER OF INTERACTIONS OF STAFF IN OUR INSTITUTE WITH PEOPLE AT NIMHD BUT I DON'T THINK -- I KNOW IT HASN'T LED YET TO A FUNDED PIECE OF RESEARCH OR A FUNDING INITIATIVE TOGETHER. SO, I TITLED THIS THE INTERSECTION OF COMPARATIVE EFFECTIVENESS OF DISPARITIES RESEARCH. IT'S SOMETHING I THOUGHT ABOUT A LOT EVER SINCE I GOT THERE. I'M GOING TO SHOW YOU SORT OF HOW THAT CAME TO BE AND WHAT WE HAVE DONE ABOUT IT AND THEN LOOK FORWARD TO DISCUSSION. SO, TAKE YOU BACK TO 2010, THE AFFORDABLE CARE ACT AND THIS IS A PIECE OF -- THIS IS THE PURPOSE OF P COREY AS LAID OUT. IT'S TO ASSIST PATIENTS -- [ READING ] IT'S ABOUT SUPPORTING DECISION-MAKING. IT'S PRETTY DARN CLINICAL. BUT I WILL SHOW YOU THAT WE STRETCH THE DEFINITION OF CLINICAL TO A FAIR AMOUNT BECAUSE WE THINK THAT NOT EVERYTHING HAPPENS RIGHT IN THE CLINIC. WE HAVE THAT MODEL, IS THAT PARADIGM OF HEARSAY A DECISION OR A CHOICE TO BE MADE. WHICH ONE WILL WORK BETTER FOR ME? THE PCORI BOARD OF GOVERNORS IS AN ILLUSTRIOUS GROUP OF 21 PEOPLE FROM EVERY SECTOR OF HEALTH CARE APPOINTED BY THE GOVERNMENT ACCOUNTABILITY OFFICE. WHEN SOMEBODY LEAVES, THE GAO STEPS BACK IN AND APPOINTS A REPLACEMENT. AND THAT'S SPELLED OUT IN LEGISLATION. SO THE FIRST PART OF OUR MISSION TALKS ABOUT, IT'S ALMOST PULLED DIRECTLY FROM THE LEGISLATION. WE HELP PEOPLE MAKE INFORMED HEALTH CARE DECISIONS AND IMPROVE HEALTH CARE DELIVERY AND OUTCOMES BY PRODUCING AND PROMOTING RESEARCH. BUT THE LAST PART, GUIDED BY PATIENTS, CAREGIVERS AND THE BROADER HEALTH CARE COMMUNITY." THOSE ARE THE PEOPLE WE CALL STAKEHOLDERS AND THAT WAS NOT IN THE LEGISLATION. THE BOARD BROUGHT THAT ON. THEY SAID, IF WE WANT RESEARCH THAT IS GOING TO SUPPORT DECISION-MAKING, WE NEED TO REALLY UNDERSTAND THE DECISIONS THAT NEED TO BE MADE AND THE PEOPLE WHO ARE TRYING TO MAKE THEM. WE NEED TO HAVE THOSE FOLKS INVOLVED IN THE RESEARCH. AND THAT MORPHED INTO WHAT WE CALL ENGAGEMENT. AND WE ARE CONVINCED AND REQUIRE THAT PEOPLE COME TO US FOR FUNDING ACT ON OUR CONVICTION THAT IF YOU INVOLVE PATIENTS AND STAKEHOLDERS IN RESEARCH, YOU GET BETTER QUALITY. SO WE INVOLVE IN TOPIC SELECTION AND PRIORITIZATION OF RESEARCH TOPICS. WE INVOLVE THEM IN THE REVIEW OF APPLICATIONS, PROPOSALS, WE INVOLVE THEM, THEY MUST BE INVOLVED BY THE RESEARCHERS IN THE DESIGNING CONDUCT OF THE RESEARCH. THEY ARE INVOLVED IN THE DISSEMINATION OF RESEARCH CLAIMS. WE EVALUATE THAT TOGETHER WITH PATIENT-ASSISTED STAKEHOLDERS œOF GENERATION PROCESS.%E TOPIC SO EVERY STAGE OF THE RESEARCH CYCLE, WE FOUND THAT INVOLVING THE RANGE OF STAKEHOLDERS, PARTICULARLY PATIENTS, MAKES A HUGE DIFFERENCE IN THE KINDS OF QUESTIONS YOU ASK, THE OUTCOMES THANK YOU DECIDE TO STUDY, THE WAY YOU INTERPRET THE FINDINGS AND THEN HOW YOU DISSEMINATE THEM. THE LEGISLATION ALSO TELLS PCORI TO BE CONCERNED ABOUT HEALTH AND HEALTH CARE DISPARITIES. SO IT JUST SAYS THAT WE WILL IDENTIFY NATIONAL PRIORITIES FOR RESEARCH. ONE OF THE FIRST THINGS WE HAD TO DO. AND WE WILL TAKE INTO ACCOUNT AMONG OTHER THINGS, PRACTICE VARIATION, THAT IS A SIGN OF UNCERTAINTY AND HEALTH DISPARITIES, THAT IS A SIGN THAT HEALTH CARE IS NOT WORKING FOR SOME POPULATIONS OF PEOPLE IN TERMS OF THE DELIVERY OF CARE AND THE OUTCOMES OF CARE. SO, WE GET IN OUR I THINK INSTRUCTIONS FROM THE GOVERNMENT, FROM CONGRESS, WE GET AN ATTENTION TO DISPARITIES. THAT TRANSLATES INTO WHAT OUR NATIONAL PRIORITIES ARE. SO, THE FIRST YEAR I WAS THERE, WE WERE REALLY BUSY AMONG OTHER THINGS ELABORATING AND TESTING WITH THE PUBLIC WHAT OUR PRIORITIES WOULD BE. AND THERE ARE 5. AND THE FIRST ONE UP THERE IS THE ASSESSMENT OF PREVENTION, DIAGNOSIS AND TREATMENT OPTIONS. SO REAL CLINICAL QUESTIONS. DRUG A VERSUS DRUG B FOR EXAMPLE. THE SECOND ONE IS IMPROVING HEALTH CARE SYSTEMS. WE REALIZE THAT MUCH OF THE PROBLEM IN THE U.S. HEALTH CARE SYSTEM TODAY IS NOT ABOUT DRUG A VERSUS DRUG B BUT ABOUT OUR SYSTEMS OF CARE OR OUR LACK OF SYSTEMS OF CARE OR HOW OUR SYSTEMS OF CARE ARE NOT FUNCTIONING WELL FOR EVERYBODY. THE THIRD IS A ABOUT COMMUNICATION AND DISSEMINATION RESEARCH. THERE IS A LOT OF INFORMATION ON THE SHELF THAT IS JUST NOT GETTING TO THE POINTED OF DECISION-MAKING SO WE HAVE A FUNDING PROGRAM IN THAT. THE FOURTH IS ADDRESSING DISPARITIES AND I'M GOING TO TALK MORE ABOUT THAT. BUT THAT WAS BECAUSE OF THE LANGUAGE IN THE LEGISLATION THAT WAS ONE OF OUR FIVE ORIGINAL PRIORITIES FOR RESEARCH. AND THE FIFTH IS ACCELERATING PATIENT-CENTERED OUTCOMES RESEARCH THROUGH BUILDING RESEARCH INFRASTRUCTURE AND ALSO THROUGH SUPPORTING METHODS OF THIS KIND OF RESEARCH. SO, AS I SAID, LET ME JUST GO BACK FOR ONE SECOND. ONE OF THE THINGS WE REALIZED VERY EARLY ON IS THAT TWO OF THESE PROGRAMS, IMPROVING HEALTH CARE SYSTEMS AND ADDRESSING DISPARITIES, ARE REALLY CLOSELY LINKED. WHEN YOU'RE TALKING ABOUT CLINICAL OUTCOMES, SYSTEMS OFTEN PROVIDE THE APPROACH TO ADDRESSING THE ISSUES OF HEALTH AND HEALTH CARE DISPARITIES. SO THOSE TWO PROGRAMS, THEY WERE SEPARATE IN THE BEGINNING BUT THEY ALWAYS HAD A NATURAL AFFINITY TOWARDS EACH OTHER. I BET MANY PEOPLE IN THIS ROOM KNOW ROMANA. SHE WAS OUR FIRST PROGRAM DIRECTOR FOR THE ADDRESSING DISPARITIES RESEARCH PROGRAM. SADLY FOR US, FORTUNATELY FOR HER, BECAUSE SHE WAS LIVING IN DENVER AND WORKING AT A DISTANCE, SHE WAS OFFERED A POSITION AT DENVER HEALTH, ONE OF THE LEADING SAFETY NET MEDICAL CENTERS IN THE IN THE U.S. AS THE HEAD OF RESEARCH, AND SHE TOOK IT. SO IN THE END OF OCTOBER, SHE DEPARTED. WE MISS HER DREADFULLY AND FOR A VARIETY OF REASONS WE DID NOT RECRUIT FOR HER REPLACEMENT, IN PART BECAUSE WHAT YOU KNOW, PROBABLY KNOW THAT IN A COUPLE OF YEARS, WE ARE GOING TO COME UP FOR RENEWAL IT'S AN UNCERTAIN TIME FOR PCORI AND IT MAKES RECRUITING PARTICULARLY FOR A HIGH-LEVEL POSITION LIKE THIS, REALLY CHALLENGING. SO, THIS IS OUR CURRENT SET OF PROGRAM OFFICERS LED BY THE PROGRAM DIRECTOR FROM THE IMPROVING HEALTH SYSTEMS PROGRAM, WHICH HAS BEEN RE-NAMED PCORI HEALTH CARE DELIVERY AND DISPARITIES RESEARCH PROGRAM. SO STEVE KEISER, HEAD OF THE IMPROVING HEALTH SYSTEM, WILL WORK CLOSELY WITH ROMANA. THE THREE IN THE MIDDLE ARE DEPUTY DIRECTORS AND THOSE ARE THE PROGRAM OFFICERS FOR DISPARITIES AND IMPROVING HEALTH SYSTEMS FOR THE NEW PROGRAM WITH ITS TITLE. SO ACTUALLY A LOT OF PEOPLE WHO DO A LOT OF DIFFERENT OR HAVE A LOT OF DIFFERENT EXPERTISE IN BOTH DISPARITIES AND SYSTEMS RESEARCH, THEY WORK AS A TEAM AND A LOT OF PEOPLE FOR YOU TO ENGAGE WITH, DEPENDING ON YOUR SPECIFIC INTERESTS. SO, THIS PROGRAM, AND THESE ARE REALLY SLIDES FROM THE ADDRESSING DISPARITIES PROGRAM, TAKES ITS MISSION FROM THE OVERALL PCORI MISSION I SHOWED YOU AND THEIR MISSION IS TO REDUCE DISPARTIES AND HEALTH CARE OUTCOMES IN ADVANCED EQUITY IN HEALTH AND HEALTH CARE. AND LITTLE GUIDING PRINCIPLE, AND THIS IS THE INTERSECTION I WAS TALKING ABOUT, IS TO SUPPORT COMPARATIVE EFFECTIVENESS RESEARCH THAT WILL IDENTIFY THE BEST OPTIONS FOR REDUCING AND ELIMINATING DISPARITIES. SO IT'S BENDING CER TO THE QUESTIONS OF DISPARITIES. SO LET ME JUST DEFINE QUICKLY WHAT WE MEAN BY CLINICAL COMPARATIVE EFFECTIVENESS RESEARCH. IT HAS TO BE RESEARCH THAT IS OUTCOMES REACH. IT COMPARES AT LEAST TWO APPROACHES OR INTERVENTIONS THAT ARE AVAILABLE AND RELEVANT TO PATIENTS AND CLINICIANS. SO WE HAVE PATIENTS AND CLINICIANS HELPING US DETERMINE WHETHER THESE TWO APPROACHES ARE BOTH RELEVANT AND WHETHER THERE IS A QUESTION OF WHICH ONE WILL BE BETTER. IT HAS TO INFORM A SPECIFIC CLINICAL OR POLICY DECISION. IT HAS TO CONSIDER THE RANGE OF PATIENT-RELEVANT OUTCOMES AND THAT'S WHERE RESEARCHERS OFTEN FALL DOWN IF YOU DON'T HAVE PATIENTS AND OTHER STAKEHOLDERS IN THE ROOM. THEY FAIL TO CAPTURE THE OUTCOMES THAT REALLY MATTER TO PATIENTS. IT TAKES ATTENTION -- I'M GOING TO TALK MORE ABOUT THIS -- TO DESCRIBING RESULTS AT THE SUB-GROUP LEVEL.% AND I'LL SHOW YOU WHAT I MEAN IN THAT. BUT IT'S JUST, ONE SIZE DOESN'T FIT ALL. WONG INTERVENTION DOESN'T WORK FOR ALL THE SAME PATIENTS. SOMETIMES THAT MAY BE A CAUSE OF DISPARITIES. OUR RESEARCH IS CONDUCTED IN REAL-WORLD POPULATIONS AND SETTINGS. WE USE BOTH RANDOMIZED TRIALS, TYPICALLY PRAGMATIC DESIGNS, CLUSTERED RANDOMIZED TRIALS, OR OBSERVATIONAL STUDY DESIGNS. I WOULD SAY THAT THE TIME, 70% OF OUR FUNDED RESEARCH IS RANDOMIZED TRIAL RESEARCH. SO, I DIDN'T REALLY REALIZE THAT. I WOULDN' HAVE PREDICT TODAY NECESSARILY WHEN I GOT HERE BUT THE MORE YOU THINK ABOUT IT, COMPARATIVE RESEARCH IS TOUGH TO DO WITH OBSERVATIONAL STUDIES. SO, BACK TO THE AFFORDABLE CARE ACT ONE MORE TIME. THEY ALSO TELL US TO LOOK OUT FOR THE POTENTIAL FOR DIFFERENCES IN THE EFFECTIVENESS OF HEALTH CARE TREATMENTS, SERVICES, ITEMS, AS USED WITH VARIOUS SUBJECT POPULATIONS DEFINED BY RACE, ETHNICITY, GENDER, AGE, GROUPS OF INDIVIDUALS WITH DIFFERENT CO-MORBIDITIES AND ALSO DEFINED BY GENETIC OR MOLECULAR SUBTYPES. SO AGAIN, OR PREFERENCES. SO THE POINT HERE IS THAT TREATMENTS DON'T WORK THE SAME FOR EVERYONE. AND BE ALERT TO THE POSSIBILITY THAT THEY MAY SYSTEMATICALLY WORK LESS WELL FOR SOME SUBGROUPS OF PATIENTS THAN OTHERS. WE DO NOT FUND STUDIES THAT AIM TO DISCOVER OR DESCRIBE OR EXPLAIN HEALTH OR HEALTH CARE DISPARITIES. WE TAKE IT FOR GRANTED THEY ARE THERE. ALMOST NO MATTER WHERE YOU LOOK. OTHERS HAVE THE RESPONSIBILITY TO FUND RESEARCH THAT ATTEMPTS TO IDENTIFY DISPARITIES AND TO UNDERSTAND THEM. ALL OF THAT IS INTENDED TO LEAD TO INTERVENTIONS. WE FUND STUDIES THAT ARE OF INTERVENTIONS. THEY EVALUATE APPROACHES TO REDUCING AND ELIMINATING DISPARITIES. WE DON'T USUALLY DO INTERVENTIONS AT THE ENTIRE POPULATION AND SEE IF THE DISPARITIES SHRINK IN ONE VERSUS THE OTHER. THAT IS PRETTY FRAUGHT AND IT IS ALSO IT WOULD TAKE MASSIVE SAMPLE SIZES. WE GO WHERE DISPARITIES ARE KNOWN AND GO TO THE POPULATIONS THAT ARE EXPERIENCING OR SUFFERING FROM DISPARITIES AND WE DO INTERVENTIONS PRIMARILY, MOST OF OUR WORK IS IN THOSE POPULATIONS. THE INTERVENTIONS CAN BE DESCRIBED AS HAVING BEEN TAILORED TO THE POPULATION THAT IS SUFFERING THE DISPARITY. ENGAGEMENT OF COMMUNITY, THE TARGETED POPULATION IS ALWAYS REQUIRED. AND WE ARE TYPICALLY COMPARING TWO INTERVENTIONS BUT IN A NUMBER OF OUR STUDIES AND ESPECIALLY THE SYSTEMS ORIENTED ONE, ONE OF THE TWO COMPARATORS MIGHT BE THE USUAL CARE, THE STANDARD OF CARE. SO YOU MAY HAVE A NEW PROGRAM THAT IS TAILORED AND YOU MAY COMPARE IT TO THE STANDARD CARE AVAILABLE. SO, THESE ARE THE GOALS OF THE ADDRESSING DISPARITIES PROGRAM AND THEY SOUND A LOT LIKE THE GOALS OF PCORI OVER ALL, FIRST OF TOOL IDENTIFY THE RESEARCH QUESTIONS BY WORKING WITH PATIENTS AND THAT IS HARD WORK. WHEN YOU'RE REALLY TRYING TO UNDERSTAND WHAT WOULD BE A MEANINGFUL INTERVENTION AND WHICH COMPARATOR IS THE RIGHT ONE. THAT IS MUCH HARDER WORK THAN I THOUGHT IT WAS WHEN I WAS JUST APPLYING FOR FUNDS. WE FUND A RESEARCH AND I'LL SHOW YOU WHAT WE FUNDED AND HOW MUCH AND WE THEN WORK HARD TO DISSEMINATE THE PROMISING BEST BEST PRACTICES FROM OUR RESEARCH. YOU GIVE OUT MONEY IN THREE CATEGORIES. THE FIRST IS THE BROAD AWARDS AND THESE ARE -- THEY HAVE TO BE CER. THEY HAVE TO BE A PATIENT-CENTERED QUESTIONS AND OUTCOMES AND YOU HAVE TO HAVE ENGAGEMENT. THIS IS ABOUT 1.5 MILLION DOLLARS, TYPICAL SELECT THREE YEARS AND THAT HAS BEEN THE BULK OF OUR FUNDING ALTHOUGH WE ARE MOVING -- WE STARTED AT FIRST LATE IN 2013. WE INTRODUCED THE TARGETED FUNDING ANNOUNCEMENTS WHICH ARE ALL ABOUT A SINGLE CLINICAL RESEARCH QUESTION. AND I'LL SHOW YOU SOME OF THOSE. THEY HAVE TO BE CER. THEY HAVE TO BE VERY PATIENT CENTERED AND YOU HAVE TO HAVE ROBUST ENGAGEMENT. YOU HAVE TO HAVE ORGANIZATIONS OF PATIENTS, CLINICIANS, PAYORS, THESE ARE LARGER. THERE ARE STUDIES AS LARGE AS 30 MILLION DOLLARS IN THIS PORTFOLIO, VARYING LENGTHS OF TIME AND FUNDING AMOUNTS. NONE LONGER THAN FIVE YEARS AT THIS POINT. AND THE THIRD IS KIND OF A HYBRID. IT CAME IN MOST RECENTLY, THE PRAGMATIC STUDIES. THESE ARE -- WE GIVE YOU A LIST OF STAKEHOLDER-DRIVEN RESEARCH TOPICS, COMPARISONS. YOU CAN ALSO RAISE ANOTHER COMPARISON THAT NEEDS A STUDY OF UP TO 10 MILLION DOLLARS DIRECT COST AND UP TO FIVE YEARS AND YOU HAVE TO HAVE ROBUST ENGAGEMENT HERE. SO THOSE ARE OUR THREE TRAUNCHS OF FUNDING. THIS SLIDE I ONLY PUT UP TO SHOW YOU WE STILL HAVE A GOOD DEAL OF FUNDING TO GIVE OUT IN THE LAST THREE YEARS. SO 2017 WE ARE WELL INTO THAT ALREADY BUT WE HAVE 345 MILLION TO GIVE OUT THIS YEAR.% THE SAME NEXT YEAR. AND THEN WE TAPER DOWN IN 2019. BUT THE MESSAGE HERE FOR YOU IF YOU'RE RESEARCHERS AND FOR RESEARCHERS YOU KNOW IS, PLEASE COME TO US WITH CER STUDIES IN THE AREA OF DISPARITIES. WE ARE VERY INTERESTED IN RECEIVING THESE APPLICATIONS AND FUNDING THEM. SO THIS IS THE PORTFOLIO. ABOUT 58 OF 72 TOTAL PROJECTS ARE UNDER BROAD FUNDING ANNOUNCEMENTS. WE HAVE TWO PRACTICING MALTIC CLINICAL STUDIES. ONE IS A STUDY OF TELEMEDICINE FOR BIPOLAR MEDICINE AND PTSD IN RURAL POPULATIONS AND THE OTHER IS A PRAGMATIC STUDY IN ASTHMA IN AFRICAN-AMERICAN AND HISPANIC PATIENTS WITH POORLY-CONTROLLED ASTHMA. WE HAVE THREE OF OUR 14 TARGETED FUNDING ANNOUNCEMENTS ARE HANDLED BY THE ADDRESSING DISPARITIES PROGRAM. THE FIRST WAS ONE OF OUR FIRST TARGETED ANNOUNCEMENTS ON TREATMENT OPTIONS FROM AFRICAN-AMERICANS AND HISPANIC LATINOS WITH UNCONTROLLED ASTHMA. EIGHT PRAGMATIC STUDIES IN THAT PORTFOLIO AND THEY ARE HELD TOGETHER IN A COLLABORATIVE. THE -- WE HAVE TWO FUNDED STUDIES AND WE DID THIS WITH THE NATIONAL HEART, LUNG AND BLOOD INSTITUTE INTERVENTIONS TO IMPROVE BLOOD CONTROL IN MINORITY, RACIAL ETHNIC, LOW SE R AND RURAL POPULATIONS AND ONE IS ACTUALLY IN A URBAN POPULATION AND ONE IS IN A RURAL AFRICAN-AMERICAN POPULATION IN ALABAMA. AND THE THIRD IS OBESITY TREATMENT OPTIONS SET? PRIMARY CARE FOR UNDERSERVED POPULATIONS. THOSE ARE THE THREE WE FUNDED. WE HAVE ONE MORE ON THE DRAWING BOARD. THIS JUST SHOWS WHERE WE HAVE FUNDED ABOUT NEARLY 200 MILLION DOLLARS AS BEEN FUNDED TO ADDRESS DISPARITIES PROGRAM PROJECTS. AND THIS IS WHERE THEY ARE LOCATED SO YOU SEE WE DO HAVE A FAIR REPRESENTATION IN THE SOUTH AND THE RURAL MID AND WEST WEST. AS WELL AS IN THE USUAL PLACES, CALIFORNIA AND NEW YORK STATE AND PENNSYLVANIA AND MASSACHUSETTS. SO, I'LL COME TO THE OTHER ONE IN A MINUTE. I THINK IT'S IN HERE. THIS JUST SHOWS THE DISPARITY POPULATIONS OF INTEREST AND I THINK THIS REALLY REFERS TO ALL OF OUR STUDIES AND MAKES THE POINTED THAT WE HAVE POPULATION VULNERABLE POPULATIONS OF INTEREST THAT EXPERIENCE DISPARITIES THROUGHOUT OUR PROGRAM. AND THIS JUST GIVES THE NUMBERS OF PROJECTS THAT ARE SPECIFICALLY BASED IN THESE VARIOUS POPULATIONS. THIS SHOWS THAT A LOT OF OUR AWARDS, AND A LOT OF THEM IN THE DISPARITIES PROGRAM, ALTHOUGH THIS IS ACROSS ALL OF OUR PROGRAMS, FOCUS ON ASPECTS OF CARE. A LOT OF OUR WORK IS ON DRUG A VERSUS CB BUT A LOT TOO, HAS FOCUSED SPECIFICALLY ON THE SYSTEMS ISSUES ABOUT CARE TRANSITIONS, USE OF COMMUNITY HEALTH WORKERS, EFFECTIVENESS, HEALTH COACHING, INTEGRATED COLLABORATIVE CARE, PALLIATIVE CARE, THE ROLE OF PATIENT NAVIGATORS, SELF-MANAGEMENT OF DISEASE, SHARED DECISION-MAKING AND TELEMEDICINE AND I'M SURE THAT OF COURSE YOU KNOW A LOT OF THESE ARE INTERVENTIONS MENTIONED AND EVALUATED AND USED IN ADDRESSING DISPARITIES. SO, WE HAVE A LOT OF THAT IN OUR PORTFOLIO OVERALL. THIS IS THE OTHER TARGETED FUNDING ANNOUNCEMENT THAT HAS NOT BEEN AWARDED YET. IF WILL BE AWARDED IN JULY THIS YEAR IT'S CLOSED. IT WENT OUT LAST YEAR. AND IT IS ON MANAGEMENT OF CARE TRANSITIONS FOR ADOLESCENTS EMERGING INTO ADULTS, 18-YEAR-OLDS ROUGHLY, WHO HAVE SICKLE CELL DISEASE. DISEASE. SO WE ARE EXCITED AND LOOKING FORWARD TO THE AWARD MAKING THAT SHOULD HAPPEN IN JUNE. THIS JUST SHOWS IN THE DISPARITIES PORTFOLIO, THESE ARE THE CLINICAL AREAS IN WHICH THE STUDIES ARE FOCUSED. SO THE LEADING ONE IS MENTAL AND BEHAVIORAL HEALTH. IT'S A VERY BIG ATTACHMENT SO IT IS LARGE. BUT OVERALL, OUR WHOLE PORTFOLIO REALLY HAS A LOT OF MENTAL AND BEHAVIORAL HEALTH IN IT. RESPIRATORY DISEASES IS LARGELY DUE TO ALL THE WORK WE ARE DOING IN ASTHMA AND CARDIOVASCULAR DISEASE THE SAME, NUTRITIONAL AND METABOLIC, A LOT OF DIABETES AND OBESITY IS PROBABLY IN THERE AS WELL. NEUROLOGIC DISORDERS, CANCER, ET CETERA. THIS IS ONE OF THE PRAGMATIC STUDIES AND THIS IS THE GROUP OF TARGETED STUD NIECE ASTHMA. WE ISSUED THE ANNOUNCEMENT AND WE SAID WE WOULD GIVE A NUMBER OF AWARDS AND THEY WOULD BE UP TO 5 MILLION DOLLARS A PIECE, I THINK. AND THEY ARE HELD TOGETHER BY ADHERING TO THE PATIENT AND CLINICIAN DIRECTED NABPP GUIDELINES. SOME OF THESE PROJECTS ARE DIRECTED TOWARDS CLINICIANS. SOME ARE DIRECTED TOWARDS PATIENTS. PRIMARILY THEY ARE DIVERSE AND ALL TAILORED AND THEY TYPICALLY TEST MULTI-COMPONENT INTERVENTIONS AND THEY FOCUS ON ASTHMA CONTROL BUT ALSO IN MEASURE QUALITY OF LIFE IN DAYS OF WORK OR SCHOOL. MEDICATION ADHERENCE AND LUNG FUNCTION AND EXACERBATIONS. AND THEY ARE MOSTLY DUE TO BE COMPLETED BY THE END OF THIS YEAR. THIS IS ONE OF OUR PRAGMATIC STUDIES AND IT'S A LARGER STUDY. NOT SURE IF IT SAYS HOW MUCH WE FUND BUT IT'S PROBABLY 6, 8, $10 MILLION STUDY. BUT IT'S A LARGE RANDOMIZED TRIAL OF SYMPTOMATIC USE OF CONTROLLERS VERSUS SUSTAINED USE, REGULAR DAILY USE, OF CONTROLLER MEDICATIONS IN ASTHMA AND AGAIN IT'S FOCUSED IN AFRICAN-AMERICAN AND HISPANIC PATIENTS WITH POORLY-CONTROLLED ASTHMA. SO IT'S A QUESTION PEOPLE HAVE BEEN TALKING ABOUT FOR A LONG TIME. YOU HAVE TO TAKE MEDICATIONS EVERY DAY. IT MAY DO A LOT FOR ADHERENCE IF YOU COULD PROVE A PROGRAM OF TREATMENTS STARTED AT THE FIRST SIGN OF EXACERBATION WAS AS GOOD. OKAY, SO I WANT TO I MADE THE CASE THERE IS MONEY REMAINING AND WE HAVE A GREAT INTEREST IN A WIDE RANGE OF CLINICAL STUDIES INTENDED TO REDUCE OR ELIMINATE DISPARITIES. I WANT TO SAY ABOUT PCORI NET. IT'S PCORI'S LARGEST INVESTMENT. WE INVESTED 350 MILLION DOLLARS IN THIS NATIONAL PATIENT CENTERED CLINICAL RESEARCH NETWORK. ITS MISSION IS TO MAKE IT FASTER, EASIER AND LESS COSTLY TO CONDUCT HEALTH SYSTEM AND CLINICAL RESEARCH, BOTH OBSERVATIONAL STUDIES AND RANDOMIZED TRIALS AND IT'S NOW POSSIBLE BY HARNESSING THE HEALTH DATA IN A PARTNERSHIP OF PATIENTS, CLINICIANS AND OTHERS, THE HEALTH DATA IN EHR, EXOTHER SYSTEM-BASED DATA AND INVOLVEMENT OF PATIENTS, STREAMLINING CONTRACTING NEGOTIATIONS AND STREAMLINING IRB APPROVAL AND OVERSIGHT TO MAKE RESEARCH FASTER, EASIER AND LESS COSTLY. OUR JUDGMENT IS A LOT OF THIS RESEARCH NEEDS TO BE DONE. IT NEEDS TO BE DONE EMBEDDED WITHIN HEALTH SYSTEMS. AND IT'S JUST TOO DARN COSTLY TO DO IT THE WAYS WE CURRENTLY DO RESEARCH. SO, WE WANT THE RESEARCH TO FEEDBACK TO THE HEALTH SYSTEMS RAPIDLY TO IMPROVE THEIR PERFORMANCE. AND FRANKLY, THIS IS NOT GOING TO HAPPEN IF WE DON'T TRANSFORM THE CULTURE OF CLINICAL RESEARCH FROM A CULTURE WHERE RESEARCH IS REALLY DIRECTED PRETTY MUCH SOLELY BY RESEARCHERS WHO ACT AS ENTREPRENEURS TO ONE THAT IS BASED ON COLLABORATION, DATA SHARING AND FOCUSED ON THE NEEDS OF PATIENTS, CLINICIANS AND SYSTEMS AND PAYORS. SO PCORI NET IS A CULTURE CHANGE AS MUCH AS IT IS A RESEARCH INFRASTRUCTURE. THERE ARE 13 CLINICAL DATA RESEARCH NETWORKS. EACH OF THESE IS A NETWORK UNTO ITSELF OF DELIVERY SYSTEMS. FOR EXAMPLE, THE COMMUNITY TRUST FOR CAPRICORN IN CHICAGO IS ALL THE ACADEMIC MEDICAL INCIDENTS CHICAGO. SO THE CITY OF CHICAGO IS COVERED FROM THE POINT OF YOUR ACADEMIC CENTERS AND THE HEALTH PLANS THAT REIMBURSE THOSE ACADEMIC CENTERS. CHILDREN HOSPITAL OF PHILADELPHIA IS A NETWORK OF 18 PEDIATRICS HOSPITALS. HARVARD UNIVERSITY INCLUDES WASHINGTON UNIVERSITY AND MORE HOUSE. WE HAVE A RESEARCHER FROM MORE HOUSE. BRIAN WHO WE WERE JUST TALKING ABOUT THAT. KEISER FOUNDATION INCLUDES ALL THE KEISER REGIONS AS WELL AS GROUP HEALTH COOPERATIVE IN SEATTLE AND HEALTH PARTNERS IN MINNEAPOLIS. LOUISIANA COVERS MUCH OF THE STATE OF WEIS ANGA BUT PARTICULARLY THE NEW ORLEANS AREA. MAYO CLINIC IS A HUGE NETWORK THAT GOES AS FAR EAST AS OHIO STATE AND UNIVERSITY OF MICHIGAN AS WELL AS MAYO. OREGON COMMUNITY HEALTH INFORMATION IS A NETWORK OF FEDERALLY-QUALIFIED HEALTH CENTERS. ET CETERA. I WON'T GO THROUGH ALL OF THIS. BUT 13 OF THESE, EACH HAVE EHRs AND SOME OTHER DATA WITH MILLIONS OF PATIENTS. WE ALSO HAVE 20 PATIENT COG REACH NETWORKS, ORGANIZATIONS WITH PATIENTS OF SINGER OR RELATED DISEASES. PRIDE NET IS A PPRN OF THE LESBIAN, GAY, TRANSSEXUAL TRANSGENDER COMMUNITY. EPILEPSY FOUNDATION IS RARE EPILEPSIES, TASK LIGHTIS, MS, AUTISM -- VASCULITIS. ALZHEIMER'S DISEASE, CROHN'S AND COLITIS, ET CETERA. THESE ARE INDIVIDUAL NETWORKS WITH PATIENTS WITH SINGLE CONDITIONS. THEY REALLY BRING A HUGE PATIENT FOCUS TO THE OVERALL PCORI NET. SO THIS IS THE DATA THAT WE HAVE PUT TOGETHER NOT SHIFTED ANYWHERE. IT STAYS IN THE PLACE IT BELONGS. IT'S A DISTRIBUTED NETWORK BUT WE STANDARDIZED THE DATA SO YOU CAN ASSESS AND CONDUCT REACH AND DATA FROM MULTIPLE CENTERS AT THE SAME TIME. WE HAVE PRESENTED DATA ON THE DISTRIBUTION. THERE IS A VERY GOOD MINORITY REPRESENTATION ALTHOUGH THE DATA ON A NUMBER OF PATIENTS IS MISSING BUT THERE IS BETWEEN THE SAFETY NET AND A NUMBER OF MAJOR SAFETY NET HOSPITALS AND HEALTH SYSTEMS. VERY GOOD URBAN AND RURAL REPRESENTATION. TOTAL OF 145 MILLION PATIENTS WITH SOME RECORDS IN THIS AS OF JULY OF LAST YEAR. I WANTED TO SAY PART OF THE CULTURE CHANGE IN PCORI NET FUNDED THROUGH THE END OF 2018. I'LL MENTION THIS. PCORI HAS TOLD US YOU HAVE TO COME WITH A SUSTAINABILITY PLAN, THEIR PLAN ABOUT TO BE PUT INTO ACTION -- WE HAVE A BIG PUBLIC BOARD MEETING TODAY WHERE IT WILL BE BROUGHT TO THE PUBLIC. -- IN FACT THEY WILL FORM A CORPORATION A NOT FOR PROFIT CORPORATION, AND IT WILL SERVE THE NETWORKS IN PCORI NET AND IT WILL DO EVERYTHING FROM MARKET TO SERVE AS A CONNEDIT TO PEOPLE WHOMENT TO INQUIRE ABOUT THE CAPACITY OF PCORI NET TO SUPPORT RESEARCH. ONE OF THE THINGS THAT IS DEVELOPING IS COLLABORATIVE RESEARCH GROUPS IN PARTICULAR AREAS. AND SO MULTIPLE NETWORKS BRING REACHERS FROM THEIR COMMUNITY WITH EXPERTISE IN AN AREA LIKE DIABETES, CARDIOVASCULAR DISEASE, CANCER. OR HEALTH DISPARITIES IS ONE OF THE 11 COLLABORATIVE RESEARCH GROUPS. SO THESE ARE DEVELOPING AREAS OF EXPERTISE THAT KNOW ESPECIALLY HOW TO DO RESEARCH IN PCORI NET. SO, I JUST ADVISE YOU TO KEEP AN EYE ON THIS AS A PLACE TO PLACE RESEARCH AND AS A GROUP OF COMMUNITY RESEARCHERS TO WORK WITH. AND WITH THAT, I'LL STOP IF ANYBODY IS LOOKING FOR MORE WORK. IF YOU'RE LOOKING FOR FUNDING OPPORTUNITIES, GO TO OUR WEBSITE AND CLICK ON FUNDING OPPORTUNITIES AND IF YOU'RE LOOKING FOR MORE WORK, GET INVOLVED WITH US AS A REVIEWER, A STAKEHOLDER OR A RESEARCH REVIEWER IN OUR MERIT REVIEW SESSIONS. SO THAT IS MY PRESENTATION AND I SURE HOPE I LEFT TIME FOR QUESTIONS. [ APPLAUSE ] >> THANK YOU VERY MUCH FOR COMING TO TALK TO US. THIS IS A VERY IMPORTANT SOURCE OF FUNDING FOR MANY OF US. I PERSONALLY HAVE NEVER APPLIED TO PCORI GRANT SO I'M RELATIVELY NEW AND SOME OF THE QUESTIONS I HAVE ARE VERY TECHNICAL. SO FOR INSTANCE, HOW DO YOU DEAL WITH THE ISSUE OF PILOT DATA FOR INTERVENTION STUDIES? I SERVED ON A NIH CLINICAL TRIAL STUDY SECTION AND WE STRUGGLED WITH WHAT IS AN ADEQUATE PILE OF DATA FOR INTERVENTION STUDY? I WAS WONDERING HOW DOES THE PCORI COMMUNITY DEAL WITH THAT? AND SECONDLY THE OTHER QUESTION I WAS GOING TO ASK YOU IS HOW DO YOU MAKE DECISIONS ON FUNDING? IS IT BASED ON PER SENTILE OR PRAGMATIC DECISION-MAKING? I MEAN DO YOU JUST GO BY THE SCORE? OR DO YOU REALLY SORT OF DECIDE BASED ON THE PROGRAMS NEEDS AND CALLS? >> EXCELLENT QUESTIONS. WE DON'T HAVE A FORMAL PILOT PROGRAM. THE JUDGMENT IN THE BEGINNING IS THAT THAT IS NOT ITSELF A CER THAT IS GOING TO GENERATE RESULTS. I WOULD SUGGEST -- I WILL SAY TWO THINGS. INCOME ONE, I WILL SAY BECAUSE WE DON'T HAVE A PILOT, WE GIVE RESEARCHERS A LITTLE MORE LEEWAY THAN SAY NIH TYPICALLY WOULD, AND WE'LL OFTEN BUILD IN A GO-NO-GO DECISION IN THE FIRST YEAR OF THE STUDY. SO, IF YOU WERE ABLE TO GET EVERYTHING UP AND RUNNING AND IF THE PATIENTS ARE GETTING RECRUITED, WE GO FORWARD. IF IT'S REALLY LOOKING LIKE IT'S NOT GOING TO WORK, AND THIS HASN'T HAPPENED OFTEN BUT WE MAY SAY, NO-GO AFTER A YEAR. SO, AND THE OTHER THING IS, THERE IS A TYPE OF AWARD YOU CAN FIND CALLED, AN ENGAGEMENT AWARD, WHICH CAN SOMETIMES ALMOST FUND SOME OF THE WORK OF A PILOT. IT'S NOT GOING TO FUND REALLY RECRUITMENT BUT IT CAN FUND SOME ASPECTS OF GETTING TO KNOW A COMMUNITY, GETTING THE COMMUNITY ONBOARD. IT CAN FUND THOSE PARTS ABOUT GETTING THE COMMUNITY ENGAGED AND THOSE THINGS SET UP. WHICH MAKES YOUR LARGER STUDY MORE INTERESTING. NOW LET'S SEE, YOUR SECOND QUESTION. WE HAVE A MERIT REVIEW PROCESS, DIFFERENT THAN NIH'S BECAUSE THERE ARE PATIENTS AND STAKEHOLDERS, OTHER STAKEHOLDERS ON THE REVIEW PANEL RIGHT ALONGSIDE THE RESEARCHERS, ABOUT 20% OF THE PANEL IS PATIENTS AND 20% IS NON-PATIENT STAKEHOLDERS. WE BASICALLY GO BY THE SCORE. BUT WE SPEND A LOT OF TIME IN THE ANNOUNCEMENT TELLING APPLICANTS THESE ARE SOME OF THE MORE IMPORTANT QUESTIONS TO US. SO WE TEND TO TRY TO DRIVE THE APPLICANTS TOWARDS OUR PREFERRED TOPICS IN THE ANNOUNCEMENTS. BUT ONCE THE STUDIES COME IN, THEY PRETTY MUCH GO BY THE SCORE THAT THEY OBTAIN. >> THANK YOU FOR THE GREAT PRESENTATION. MY QUESTION WAS ABOUT THE USE OF TECHNOLOGY IN PCORI STUDIES. AND DO YOU DO ANY COMPARATIVE EFFECTIVENESS IN ADDITION TO DRUGS AND OTHER OUTCOMES LOOKING AT HOW TECHNOLOGY IMPACTS HEALTH DISPARITIES AND WHAT CAN BE DONE IN THAT SPACE TO GET MORE PEOPLE PARTICIPATING? LIKE YOUR NETWORK OF 145 MILLION PEOPLE. THERE SHOULD BE SOME WAY TO REACH OUT TO THEM FOLKS. IS THAT GOING ON? >> THE INSIDE PCORI NET, THEY EXPERIMENT WITH A LOT OF ALTERNATIVE TECHNOLOGIES FOR INVOLVING NOT JUST PATIENTS BUT SORT OF PEOPLE WHO AREN'T PARTICULARLY PATIENTS OF INTEREST FOR PARTICULAR STUDY RIGHT NOW BUT THERE ARE PEOPLE WHOSE DATA ARE ACTUALLY CONTRIBUTING TO THE DATABASE. WE ALSO FUND A NUMBER OF PROJECTS ABOUT DEVICES. PATIENT-WORN DEVICES FOR EXAMPLE. SO THOSE KINDS OF TECHNOLOGY ARE INVOLVED IN OR BEING EVALUATED IN SOME COMPARATIVE EFFECTIVENESS STUDIES AND TELEMEDICINE ANOTHER KIND OF TECHNOLOGY WE ARE VERY INTERESTED IN. BECAUSE WE THINK THAT REALLY IS A POTENTIAL APPROACH TO DISPARITIES IN MANY CASES. URBAN AS WELL AS RURAL. >> JOE, I HAVE A QUESTION OR REQUEST. SO YOU SHOWED SOME EXCITING FUNDED PROJECTS ON UNCONTROLLED ASTHMA, HYPERTENSION, I KNOW THERE IS ONE ON LANGUAGE ACCESS THAT I WAS INVOLVED WITH IN TELEMEDICINE FOR MENTAL HEALTH. DO WE HAVE RESULTS YET? OR ARE WE STILL IN THE -- >> SO THAT IS KIND OF ONE OF OUR BIGGEST CHALLENGES IS SHOWING RESULTS. RESULTS ARE BEGINNING TO TRICKLE IN. WE ACTUALLY DO HAVE SOME VERY INTERESTING RESULTS FROM A NUMBER OF STUDIES NOW. BUT, THE BIG WAVE IS NOT NEW UNTIL THE END OF THIS YEAR. THAT IS WHEN I THINK WE'LL SEE JUST IT'SES OF PUBLICATIONS AND STUDIES WE CAN TALK B THE REB WEBSITE HAS A LOT OF PUBLICATIONS ON IT NOW. >> SO WE OUGHT TO, AS AN INSTITUTE, SORT OF MAKE SURE THAT WE LINK TO THE RELEVANT ISSUES THAT MATTER TO US AND PARTICULARLY AROUND MINORITY HEALTH, HEALTH DISPARITIES REDUCING THE DISPARITIES AND OTHER ISSUES AROUND HEALTH CARE SYSTEMS. AND THEN THE OTHER COMMENT WAS, WHEN YOU WENT THROUGH THE P CORE NET DATA, YOU DID POINT OUT THAT A LOT OF MISSING DATA ON RACE AND IT SEEMED LIKE IT WAS 50%. IT WASN'T -- >> I DON'T THINK -- I DIDN'T MAKE THE SLIDE. [ MULTIPLE SPEAKERS ] I DON'T THINK IT'S THAT BAD BUT IT'S 30% OR SO. >> THAT'S ONE OF OUR PRIORITIES IN THINKING ABOUT ELECTRONIC MEDICAL RECORD AND HEALTH SYSTEMS AND HOW WE GET SYSTEMS TO DO THE BASIC THINGS WELL AND THEN GO FROM THERE. >> WHAT I EXPECTED -- ONE OF THE KEY THINGS ABOUT P CORE NET AND IT'S DIFFERENT FROM CLAIMS DATA, IS THAT P CORE NET COMES MOSTLY FROM EMRs AND YOU CAN IMAGINE IF SOME OF THAT SUBSTANTIAL CHUNK OF THAT 145 MILLION ARE PEOPLE WHO DROP BY PARTICIPATING SYSTEM ONCE. SO THEY MAY BE CAME IN FOR ABRASION OR SOMETHING LIKE THAT ONCE AND THOSE ARE COUNTED IN 145. SO, IF YOU SAID HOW MANY PEOPLE LOOK TO GET THEIR REGULAR CARE IN ONE OF THESE SYSTEMS, IT WOULD BE MORE LIKE 70 OR 80 MILLION. AND I WOULD SAY, I WOULD BET YOU THAT RACE ETHNICITY IS AVAILABLE IN MUCH HIGHER PERCENTAGE OF THOSE THAN IN OVERALL. >> SO, IF A YOUNG PERSON COMES ME AND SAY, SHOULD I APPLY FOR PCORI GRANT NEXT CYCLE IN OCTOBER OR SO? >> THAT SOUNDS ABOUT RIGHT. >> SO, WHAT SHOULD I TELL THEM? >> SAY ABSOLUTELY. >> WELL, BUT THE CONCERN IS WILL PCORI BE THERE? IN ABOUT ANOTHER 3-4 YEARS? SO I KNOW YOU CAN'T ANSWER THAT QUESTION. >> I CAN SAY SOMETHING VERY IMPORTANT TO YOU THAT WILL PUT YOUR MIND AT EASE. TO SOME EXTENT. AND THAT IS THAT WHEN WE MAKE AN AWARD, WE SET ASIDE THE ENTIRE AMOUNT. SO, DOES THAT HELP? SO WE PLAN TO BE -- EVEN IF WE SHUT DOWN IN 2019 IN TERMS OF MORE FUNDING, WE'LL BE THERE TO CLOSE OUT THE AWARDS THAT WE MADE OR SOME DAY WE MAY SAY, SEND HALF OVER TO NIMHD -- [ LAUGHS ] DON'T GET YOUR HOPES UP. BECAUSE WE LIKE TOES CONTINUE TO EXIST. THE OTHER THING IS, I WILL SAY THAT THESE DAYS THAT WE LIVE IN RIGHT NOW, WHERE CONGRESS IS TRYING TO COME UP WITH A REPAIR OR A REPEAL AND REPLACE STRATEGY, IT'S A LITTLE UNCLEAR. I MEAN IT'S CONCEIVABLE THAT SOMETHING COULD HAPPEN TO THE FUNDS THAT FLOW TO PCORI. IF WE WERE BETTING WE WOULD SAY IT'S A LITTLE -- THE CHANCES ARE BETTER THAN 50% THAT NOTHING WILL HAPPEN TO PCORI. IF SOMETHING HAPPENS IT WILL BE A PARTIAL REDUCTION. IT WON'T BE -- FUNDING COMES FROM THREE SOURCES. IT'S UNLIKELY THAT ALL THREE WILL GET KNOCKED DOWN. >> A QUESTION -- ENJOYED YOUR PRESENTATION. CONNECT THE DOTS FOR ME. TRYING TO GET A FEEL FOR HOW YOU MENTIONED YOU HAVE RESULTS AND THESE RESULTS CAN CHANGE SYSTEMS AND HOW PATIENTS ARE TREATED. CAN YOU GIVE ME AN EXAMPLE OF THAT? >> HERE IS -- I LOVE THIS. >> A CLEAR, EASY -- >> HERE IS YOUR NEW AUDIENCE. YOU HAVEN'T HEARD THIS. SO WE FUNDED A SERIES OF THREE STUDIES. THESE ARE NOT RANDOMIZED TRIALS. OBSERVATIONAL DATA FROM CHILDREN'S HOSPITAL ACROSS THE COUNTRY. SO HAPPENS WHEN KIDS GET HOSPITALIZED WITH A SERIOUS INFECTION LIKE A SERIOUS PNEUMONIA, A RUPTURED APPENDICITIS, OSTEOMILITIS, WHEN THAT HAPPENS, THEY GET INTRAVENOUS ANTIBIOTICS IN THE HOSPITAL AND IT'S HISTORICALLY THE CASE THEY GO HOME WITH A PIC LINE, A PER CUTANEOUS INTERCARDIAC CATHETER, AND FOR 4-6 WEEKS, IV ANTIBIOTICS GET ADMINISTERED IN THE HOME. MANAGE FINN YOU'RE A 3-YEAR-OLD CHILD AND YOU HAVE A BOARD AND CATHETER ON AND YOU LIKE TO PLAY. BAD THINGS HAPPEN TO THOSE CAT TERS. THEY GET CLOTTED. THEY GET INFECTED. THEY CAN EVEN BREAK AND YOU HAVE TO GO BACK TO THE HOSPITAL AND GET THEM SURGICALLY REMOVED. SO, THESE GUYS DID -- THE TREND HAS BEEN TURNING. AND THERE ARE SEVERAL STUDIES THAT SUGGESTED THAT YOU CAN -- KIDS WOULD DO JUST AS WELL IF YOU SENT THEM HOME ON ORAL ANTIBIOTICS. SO THE PRACTICE IS TURNING IN THIS COUNTRY. YOU HAD WIDE PRACTICE VARIATION. THEY SHOWED US IN THEIR APPLICATION LIKE 18 HOSPITALS OR 28 HOSPITALS, THEY SHOWED US HOSPITALS WITH 100% OF KIDS GOING HOME ON PIC LINES AND HOSPITALS WITH 100% GOING HOME ON ORAL ANTIBIOTICS AND THEN A NUMBER OF HOSPITALS IN BETWEEN. THEY DID STUDIED THAT ESSENTIALLY LOOKED AT THE RATE OF SENDING KIDS HOME ON PIC LINES VERSUS ORAL. AND SHOWED THAT SEPARATELY AND THREE SEPARATE STUDIES IN EACH CASE, THE KIDS SENT HOME ON ORAL ANTIBIOTICS DID EVERY BIT AS WELL OR SLIGHTLY BUT NOT SIGNIFICANTLY BETTER ON ORAL ANTIBIOTICS THAN ON THE PIC LINES. IN ONE OF THE 3 THEY DID SIGNIFICANTLY BETTER IN TERMS OF REOCCURRENCE OF INFECTION. AND THEN OF COURSE 16-20% OF THE KIDS WITH THE PIC LINES HAD A COMPLICATION THAT REQUIRED THEM TO GO BACK TO THE HOSPITAL. 0% IN THE ORAL ANTIBIOTICS. SO FOR THESE THREE CONDITIONS, THIS WAS A VERY LARGE STUDY, VERY PERSUASIVE PIECE OF EVIDENCE THAT ORAL IS INDEED AS SAFE MAYBE SAFER THAN A PIC LINE. AND GUIDELINES ARE CHANGING AS WE SPEAK. THE RESEARCHER WAS SOMEBODY ON THE PEDIATRIC INFECTIOUS DISEASE BOARD AND THEY ARE REWRITING THE GUIDELINES RIGHT NOW AND INCORPORATING THIS ALONG WITH THE EUROPEAN EVIDENCE. THAT'S JUST WONG. I HAVE A FEW OTHERS. YES? >> -- THAT'S JUST ONE. >> SO, I BELONG TO THE POPULATION HEALTH GROUP AT STANFORD AND ONE OF THE DISCUSSION POINTS WAS HOW CAN WE CHANGE ELECTRONIC MEDICAL RECORDS SO THEY ACTUALLY IDENTIFY THE CHARACTERISTICS OF THE INDIVIDUAL, ETHNICITY, LANGUAGE, ET CETERA. WHAT EFFECT DOES YOUR GROUP HAVE IN MOVING EMRs AND THAT THING? BECAUSE AT THE END OF THE DAY, THAT IS THE REAL WORLD FOR THE FUTURE INDEPENDENT OF WHO IS IN THE WHITE HOUSE. IF WE DON'T KNOW, IF WE DON'T LOOK, WE'LL NEVER KNOW. SO I'M WONDERING TO WHAT DEGREE CAN YOUR GROUP HAVE AN INFLUENCE ON MAKING SURE THAT THE FUTURE OF EMR INCLUDES THINGS THAT WE ARE INTERESTED IN? >> IT IS A VERY DIRECT INFLUENCE. VERY INDIRECT INFLUENCE. WE HAVE NO LEVERAGE WITH THE EMR COMPANIES, FOR EXAMPLE. AND MORE IMPORTANTLY, WE DON'T REALLY HAVE THAT MUCH LEVERAGE DIRECTLY WITH THE SYSTEMS AND OFTEN TIMES THE EMR CAN DO IT IF THE SYSTEMS CHOSE TO HAVE THE DISCIPLINE TO DO IT. SO, ONE OF THE BIG PROBLEMS WITH NATIONAL NETWORK EMR DITA IS NOT SO MUCH THAT EPIC IS DIFFERENT THAN SEMENS OR -- I CAN'T REMEMBER THE OTHER ONE -- SUNNER. SORRY IF ANYBODY FROM SUNNER IS HERE. IT'S NOT SO MUCH THAT EPIC IS JUST FUNDAMENTALLY DIFFERENT IT'S THAT FROM VANDERBILT TO UCSF TO MORE HOUSE, THE CLINICIANS AND CLINICAL LEADS CHOOSE TO USE IT SOMEWHAT DIFFERENTLY AND THEY DON'T TRAIN THEIR FRONT-LINE PEOPLE TO ENTER DATAA THE SAME WAY. SO WITHIN THE SAME SYSTEM, DATA MEANS SOMETHING DIFFERENT. SO THE ONLY WAY WE WILL SUCCEED IS IF WE INVOLVE ENOUGH PATIENTS AND CLINICIAN AND ENOUGH SYSTEM LEADERS IN THE RESEARCH WHERE THEY GET ACCUSTOMED TO RELYING ON THEIR DATA TO ANSWER QUESTIONS. IF WE GIVE TO THAT POINT AND I'LL ADMIT IT'S A BIG CULTURE CHANGE. IF WE GET THERE, THEN SYSTEMS WILL FEEL THE IMPORTANCE OF STANDARDIZED DATA AND FILLING IT OUT 100% OF THE PEOPLE. THAT'S ABOUT ALL THE LEVERAGE WE HAVE. >> I WOULD COMMENT FERNANDO IT IS ALL POLITICS ARE LOCAL AND THIS IS SOMETHING THAT DOES CHANGE WITHIN SYSTEMS. IT MAY TAKE TIME AND EFFORT BUT GETTING SYSTEMS TO BOTH CHANGE THE CATEGORIES -- EPIC HAS OR TO USE EPIC AS AN EXAMPLE, HAS THE CAPACITY TO DO THIS BOTH FOR RACES, ETHNICITY, SOME SORT OF SOCIOECONOMIC METRIC, USUALLY EDUCATION. THEY ALWAYS COLLECT INSURANCE. THEY NEVER FORGET THAT. AND THEN THE LANGUAGE ENGLISH PROFICIENCY VARIABLE THAT WE WERE ABLE TO OPERATIONALIZE AND ASK TWO QUESTIONS AND REALLY GET A MUCH BETTER ASSER ATTAINMENT OF WHO NEEDS AN INTERPRETER. SO, I THINK YOU CAN MOVE THE SYSTEM SYSTEM. I THINK IT IS DOABLE. >> OTHER GROUPS HAD IOMs PUT TOGETHER A REPORT ON SORT OF CAPTURING THE SOCIAL AND BEHAVIORAL DETERMINANTS IN THE EHR. NOW AGAIN, YOUR POINT IS GREAT WHICH IS THAT YOU CAN SAY ALL OF THAT AND THE IOM CAN, THERE IS STILL THE REQUIREMENT OF PEOPLE UP TAKING THAT WITHIN THE SYSTEMS. SO THERE AT LEAST IS THE ROADMAP OF THE KEY SOCIAL DETERMINANTS THAT OUGHT TO BE INCLUDED IN THAT EHR. >> THANK YOU VERY MUCH. [ APPLAUSE ] SO LET'S MOVE ON TO OUR NEXT AGENDA ITEM WHICH IS BASICALLY TO ACKNOWLEDGE OUR RETIRING MEMBERS. WE DID THIS FOR VALERIE YESTERDAY AND SHE WASN'T ABLE TO BE HERE TODAY. AND TWO OF OUR RETIRING MEMBERS ARE NOT PRESENT. SO, I'M GOING TO CALL ON DR. EDDIE GREEN AND THEN DR. LINDA ADAMS TO EACH REFLECT ON THEIR CONTRIBUTIONS OR THEIR PARTICIPATION AT NIMHD. I'LL SAY A FEW WORDS FIRST ABOUT EDDIE WHO HAS BEEN ENTHUSIASTIC OPTIMIST ON THE BOARD. WHEN HE ASKED ME TO GO TO ROCHESTER, MINNESOTA, OF ALL PLACES, I SAID HOW CAN I SAY NO? WE FIGURED OUT A WAY TO MAKE IT WORK EVEN THOUGH I HAD TO CHANGE THINGS. HE BROUGHT A TREMENDOUS AMOUNT OF INSIGHT ON CLINICAL MEDICINE, NEPHROLOGY, RESEARCH, IN A VERY SUCCESSFUL ENTERPRISE OF CLINICAL CARE AND I THINK WE VALUED YOUR MANY POSITIVE CONTRIBUTIONS AND INSIGHTS AT NIMHD AT LEAST IN THE YEAR AND A HALF THAT I SHARED THE FORUM WITH YOU. SO WE'LL MISS YOU. AND WE HOPE THAT YOU'LL STAY CONNECTED TO THE INSTITUTE IN OTHER WAYS AND WE'LL BE WILLING TO SERVE AGAIN WHEN ASKED FOR OTHER SPECIAL REQUESTS. SO, EDDIE, YOU HAVE THE FLOOR. >> THANK YOU. I JUST WANT TO POINT OUT AND SAY THANKS TO EVERYONE OF YOU HERE AND PARTICULARLY, ALL THE DIRECTORS I HAVE BEEN ABLE TO SERVE UNDER AS WELL AS THE STAFF. YOU HAVE BEEN IMMENSELY HELPFUL AND HELPING THIS COUNCIL TO ASSIST YOU IN GETTING THE JOB DONE OF MAKING HEALTH DISPARITIES A PRIORITY FOR NIH AND ALSO FOR OUR COUNTRY AND MANY TIMES AT MANY OF OUR UNIVERSITIES. AND I LOOK AT WHERE WE ARE NOW COMPARED TO WHEN I FIRST -- CONSIDERING THE JOURNEY OF HEALTH DISPARITIES IS PART OF ONE'S CAREER, AND WE MADE TREMENDOUS PROGRESS. THE OUTCOMES ARE NOT WHAT WE WANT THEM TO BE, BUT WE ARE ON THE RADAR SCREEN AND IN EVERY PLACE THAT I SIT WHETHER IT IS IN THE BOARD ROOM OR THE MAYO CLINIC, WHETHER IT'S ON SOME OF THE REACH COMMITTEES AT THE MAYO CLINIC, WHETHER IT'S IN CLINICAL SETTINGS, WHETHER IT'S IN TEACHING RESIDENT HOUSE STAFF, FELLOWS, WHAT HAVE YOU, YOU CAN'T GET BY WITHOUT DISCUSSING THE IMPACT OF WHAT HEALTH DISPARITIES WILL MEAN FOR ALL THOSE STAKEHOLDERS AND PEOPLE. AND I THINK NIMHD DESERVES A TREMENDOUS AMOUNT OF CREDIT FOR BEING THE CATALYST FOR THIS AND ALSO FOR KEEPING THE PROCESSES GOING, THE GRANTS YOU'RE FUNDING NOW, THE GRANTS WE JUST HEARD ABOUT AND THE OPPORTUNITIES TO HAVE A VOICE IN SO MANY DIFFERENT WAYS, SO MANY DIFFERENT PLATFORMS. I THINK IT'S VERY IMPORTANT. AND I WOULD JUST ASK THAT YOU YOURSELF KEEP THE VOICE AS MUCH AS YOU CAN WITHIN THE CONSTRAINTS OF WHAT THE GOVERNMENT ALLOWS YOU TO DO SPECIFICALLY, BUT FOR THE COUNCIL MEMBERS, THIS IS AN IMPORTANT VOICE TO HAVE. BECAUSE AT THE END OF THE DAY, IT COUNTS FOR PATIENTS AND COMMUNITIES.% THAT'S WHERE THE RUBBER TRULY MEETS THE ROAD. WE GET THE RESEARCH DONE BUT IF IT HAS TO MEAN SOMETHING FOR PEOPLE. AGAIN I SAY THANKS TO ALL OF YOU, IT'S BEEN MY PLEASURE TO SERVE. I HAVE BEEN HONORED BY IT AND I'M TRULY HUMBLED TO WORK WITH SO MANY GREAT FOLKS AROUND THESE TABLES EVERY TIME I SHOW UP. THANK YOU VERY MUCH. [ APPLAUSE ] >> [ OFF MIC ] SORRY. SO LINDA HAS BEEN QUIETLY EFFECTIVE IN OUR MEETINGS. SHE ALWAYS HAS IMPORTANT OBSERVATIONS TO MAKE. IT WILL NOT BE THE FIRST ONE TO JUMP OR THE MOST ADAMANT PASSIONATE COMMENT, BUT SHE REALLY HAS THOUGHTFUL INSIGHT INTO THE PROCESSES, OFTEN STEPPING BACK AND SAYING, OKAY, WHAT ARE WE DOING HERE? AND I REALLY HAVE APPRECIATED YOUR MANY CONTRIBUTIONS HERE, BOTH IN THE GROUP SETTING HERE OF THE COUNCIL MEETING AS WELL AS IN THE WORK GROUPS AND IN THE SMALL GROUPS AND BY E-MAIL. SO, I DO VALUE THAT. AND PLUS YOU HAVE AN RN. SO BRING A PERSPECTIVE IN HEALTH CARE THAT IS CRITICAL AND COMPLEMENTARY AND DIFFERENT THAN MANY OF US PHYSICIANS AND CERTAINLY NON-PHYSICIAN RESEARCHERS. FOR ALL OF YOUR CONTRIBUTIONS. [ APPLAUSE ] >> IT'S BEEN A PRIVILEGE FOR ME TO BE PART OF THIS WONDERFUL ORGANIZATION AND HAVING A CHANCE TO MEET MANY OF THE PEOPLE WHO WORK AND CONTRIBUTE TO TRYING TO IMPROVE THE HEALTH AND HEALTH EQUITY OF PEOPLE AROUND OUR COUNTRY. AND AS A MEMBER OF THIS COMMITTEE, I REALLY HAD FELT REALLY SAD ABOUT JUDY. I KNOW WHEN I FIRST MET HER, WE HAD SOME REALLY INTERESTING CONVERSATIONS ABOUT THINGS THAT SHE WAS SO PASSIONATE ABOUT. I KNOW THAT MY INTEREST HAS ALWAYS BEEN IN ADOLESCENT HEALTH AND I HAD QUESTIONS ABOUT THEIR ISSUES OF SEXUALITY AND WHEN PEOPLE ARE GOING THROUGH PUBERTY AND HOW DO WE REALLY MAKE INFORMED DECISIONS ABOUT HOW WE MANAGE THE CARE OF CHILDREN AND ADOLESCENTS. AND THIS IS SOMETHING THAT IS REALLY VERY IMPORTANT ON OUR CAMPUS AS I SEE SOME OF THE YOUNG PEOPLE WHO HAVE ISSUES AND THEY ARE TRYING TO STRUGGLE WITH THEIR OWN SEXUALITY. SO I REALLY DO MISS HER. THE OTHER THING THEY HAS BEEN GREAT ABOUT THIS GROUP IS JUST THE MEMBERS OF THE COUNCIL AND THE WISDOM THAT EVERYONE BRINGS TO TRY TO HELP SHAPE THEIR PASSION, THEIR RESEARCH INTEREST AND JUST THE CONVERSATIONS WE HAD, AND I HAD THE PLEASURE OF MEETING DR. GREEN AND HIS DAUGHTER AND THE CONVERSATIONS I HAVE WITH HER AND HOW MUCH SHE REALLY IS MAKING DECISIONS ABOUT GOING INTO HEALTH CARE AS A RESULT OF HAVING WONDERFUL PARENTS. AND THEN TO SEE AGAIN LINDA, WHO I MET MANY YEARS AGO, AND THEN TO REALLY RECONNECT AGAIN. SO THAT IS PART OF THE JOURNEY AND THE SATISFACTION OF BEING PART OF THIS GROUP. MY INITIAL CONTACT WITH THIS ORGANIZATION WAS WITH HER AND A PERSON WHO I HAD -- ORE I MET AFTER I GRADUATED AND HE REALLY DID A LOT OF THINGS TO ENCOURAGE ME IN MY JOURNEY TO TRY TO WORK WITH IN TERMS OF HEALTH EQUITY AND DISPARITIES. AND TO SEE THIS ORGANIZATION DEVELOP AS IT HAS, HAS BEEN INTERESTING TO SEE. I WANT TO THANK THE STAFF AND œTHE WORK YOU DO. THE FACT THAT MANY FOUNDATIONS I SERVE AUTO BOARD FOR RIGHT NOW ARE CHOOSING HEALTH EQUITY AS A WAY THEY ARE BEGINNING TO FUND PROGRAMS IN ALL THE COMMUNITIES. SO I HAVE REALLY ENJOYED MY TIME WORKING WITH MULTIPLE DIRECTORS AND IT SEEMS LIKE YOUR WORK HERE IS GOING TO BE VERY REWARDING AND I JUST REALLY SAW THIS AS A PRIVILEGE. SO THANK YOU VERY MUCH. >> THANK YOU VERY MUCH. [ APPLAUSE ] OUR NEXT SCHEDULED PRESENTATION IS OUR OWN LINDA. I WANTED TO MAKE SURE THAT AT EACH COUNCIL MEETING WE HAD A MORE SCIENTIFIC PRESENTATION. GIVEN THAT IT WAS SUPPOSED TO BE WINTER, I FIGURE MAYBE MAKE SURE TO GET A COUNCIL MEMBER TO DO SCIENCE, THAT WAY THEY ARE OBLIGATED TO COME AND NOT GET POSTPONED. TURNED OUT LINDA ALMOST COULDN'T MAKE IT GIVEN TO SOME ISSUES WITH HER SHOULDER. BUT WE ARE GLAD YOU'RE HERE. WE ARE GLAD YOU WILL BE ABLE TO PRESENT IN PERSON. LINDA IS A CHEROKEE NATION OF OKLAHOMA WORKING IN PUBLIC HEALTH SCIENCE SINCE 1971. SHE'S TAUGHT AT UNIVERSITIES FOR 18 YEARS, CALL STATE LONG BEACH AND AT UCLA. SHE DEVELOPED AND IMPLEMENTED NATIVE-AMERICAN RESEARCH PROGRAM AT NCI, WORKED AT THE AMC CANCER RESEARCH CENTER IN DENVER BEFORE MOVING TO FOUND THE NATIVE-AMERICAN CANCER RESEARCH CORPORATION IN WHICH SHE IS NOW THE DIRECTOR OF SHE ALSO IS THE PRESIDENT OF THE NATIVE-AMERICAN CANCER INITIATIVES INCORPORATED. SHE CURRENTLY IS THE PI AND SUBCONTRACTOR FOR THREE NIH GRANTS AND FOR 2016 PHASE I SBIR, A TOOL TO IMPROVE EVALUATION PATIENT MEDIATION SERVICES IN UNDER SERVED POPULATIONS FROM NIMHD. SHE SERVES ON MULTIPLE BOARDS AND HAS OVER 125 PUBLICATIONS OF MOST OF WHICH ADDRESS NATIVE-AMERICAN CANCER, GENETICS, EVALUATION, PATIENT OBLIGATIONS, SURVIVOR, QUALITY OF LIFE, PUBLIC HEALTH AND DATA ISSUES. HER PRESENTATION TODAY IS ENTITLED, OVERVIEW OF NATIVE-AMERICAN CANCER RESEARCH CORPORATION WITH FOCUS ON THE M HEALTH AMERICAN INDIAN TOBACCO CESSATION STUDY. AND I THINK YOUR SLIDES ARE IN THE PACKET. THANK YOU. >> THANK YOU. [ APPLAUSE ] AND THANK YOU FOR INVITING ME TO PRESENT AND SHARE A LITTLE BIT ABOUT WHAT IS HAPPENING WITH OUR PROGRAM. AND THERE ARE SEVERAL THINGS THAT I DID NOT INCLUDE IN HERE AND IT'S ABOUT THE SBIR THAT WE ARE IN PHASE I NOW FOR THE PATIENT NAVIGATION EVALUATION TABLET APPLICATION. JUST WANTED TO LET YOU KNOW WHAT AN EXCITING ADVENTURE THIS HAS BEEN WORKING ON THIS. AND I ENCOURAGE YOU WHO HAVE PROFIT ARMS TO YOUR DIFFERENT ORGANIZATIONS TO PURSUE SBIRs BECAUSE THIS IS REALLY, REALLY BEEN FUN. SO, BRIEFLY I WANTED TO GIVE YOU A GLANCE AT INDIAN COUNTRY BECAUSE I KNOW A LOT OF PEOPLE DON'T KNOW WHERE OUR PEOPLES COME FROM. AND THIS MAP IS SHOWING YOU THE DIFFERENT REGIONS. WE USED TO CALL CONTRACTED HEALTH SERVICES THE PHRASING WAS CHANGED TO PURCHASE REFERRED CARE A FEW YEARS AGO. BUT THESE ARE THE DIFFERENT DIVISIONS OF THE COUNTRY. WHAT I WANT YOU TO NOTICE IS THE THREE AREAS THAT ARE HIGHLIGHTED HERE IS WHERE WE HAVE STATISTICALLY SIGNIFICANT DIFFERENCES IN CANCER INCIDENTS, MORTALITY AND SURVIVAL. THEY ARE DIFFERENT FROM NON NATIVES LIVING IN THE SAME AREA AND DIFFERENT FROM ONE REGION OF THE COUNTRY TO THE OTHER. FOR EXAMPLE, IN ALASKA, CANCER HAS A 15-FOLD INCREASE AS OPPOSED TO OTHER PEOPLE WHO LIVE IN ALASKA WHO ARE NOT ALASKA NATIVE AND IN COMPARISON TO INDIGENOUS PEOPLE WHO LIVE IN OTHER REGIONS OF THE COUNTRY. NORTHERN PLAINS AND SOUTHERN PLAINS BOTH HAVE STATISTICALLY SIGNIFICANT CHANGES IN BREAST CANCER, CERVICAL, LUNG CANCER, VERY DIFFERENT PATTERNS. SOUTHWEST YOU'LL NOTICE IS NOT CIRCUMSTANCEYELED BUT BECAUSE SOMETHING ISN'T CIRCLED DOESN'T MEAN IT'S NOT IMPORTANT. WHAT THIS DOES SHOW US IS THAT THERE ARE SO MANY MORE NATIVE PEOPLE LIVING IN THE SOUTH WEST AS COMPARED TO SOME OF OUR OTHER AREAS, THAT THE BURDEN OF DISEASE IS GREATER. SO,S SUCH AS WITH CANCER, WE HAVE FAMILY MEMBERS LIVING IN THE CITY AND GETTING INCOME, THEY ARE MOVING BACK TO THE RESERVATION TO TAKE CARE OF SOMEONE AND NOW THE FAMILY THAT WAS ALREADY LIVING IN POVERTY IS LIVING IN GREATER POVERTY. MANY ISSUES LIKE THIS THAT IMPACT SOCIAL DETERMINANTS OF HEALTH AND ALSO JUST A REMINDER THAT ALASKA IS AS LARGE AS THE LOWER 48. SO YOU ALWAYS SEE IT FLOATING LIKE IT'S HAWAIIAN ISLAND OR SOMETHING IN THE PACIFIC. BUT THIS IS A HUGE MASSIVE BODY. AND WE HAVE VERY UNIQUE ISSUES IN COPING WITH CANCER WITH COMMUNITIES THAT LIVE WITH SUB ASSISTANCE AND VERY RURAL, BUSH COMMUNITIES. THESE ARE DATA FROM THE AMERICAN JOURNAL OF PUBLIC HEALTH 2014. AND JUST TO SHOW YOU ONLY LOOKING AT MALES AND THESE ARE MORTALITY RATES BUT LOOKING AT NORTHERN PLAINS, ALASKA AND SOUTHERN PLAINS, YOU'RE GOING TO SEE HOW MUCH MORE ELEVATED THEY ARE IN COMPARISON TO NON NATIVES WHO LOVE IN THE SAME AREAS. SO WHEN WE TALK ABOUT DIFFERENT PATTERNS OF DISEASE, THE PATTERNS THAT WE SEE IN ALASKA ARE VERY DIFFERENT FROM THE PATTERNS WE SEE IN NORTHERN PLAINS AND SOUTHERN PLAINS EVEN THOUGH THEY ARE ALL ELEVATED. SO THEY ARE DIFFERENT PATTERNS, DIFFERENT CO-DEPENDENTS. SIMILARLY FOR WOMEN, AGAIN DEATH RATES YOU'LL STILL SEIZE NORTHERN PLAINS, SOUTHERN PLAINS AND ADAS CAHAVING VERY, VERY DIFFERENT TYPES OF PATTERNS OF DISEASE. AND A DIFFERENT WAY RATHER THAN LOOKING AT 5 YEAR RELATIVE SURVIVAL PERCENTAGE, WHEN WE LOOK AT THEINS DON'TS MORTALITY RATE, IT GIVES YOU A BETTER IDEA OF WHAT IS HAPPENING WITH SURVIVAL FOR ONCE SOMEBODY IS DIAGNOSED WITH CANCER, HOW LONG THEY ARE ALIVE. AND THIS IS WHAT THEY CALL THE MORTALITY TO INCIDENTS RATE. WHAT THIS IS SHOWING YOU IS THAT FOR EVERYONE OF OUR REGIONS WE HAVE EXCESSIVE DEATHS. AND A LOT OF THIS IS BECAUSE WE CANNOT GET INTO QUALITY CANCER CARE. WE HAVE DELAYS FOR A WHITE WOMAN WHO IS DIAGNOSED WITH BREAST CANCER. SHE IS TYPICALLY IN TREATMENT WITHIN THREE WEEKS. AN AMERICAN INDIAN WOMAN IT IS SIX MONTHS. IF WE ARE LOOKING AT AN AMERICAN INDIAN MALE WITH COLORECTAL CANCER OR PROSTATE CANCER, WE ARE LOOKING AT NINE MONTHS. WE ARE LOOKING AT EXTENSIVE INCREASES IN FINANCIAL BURDEN, PHASE II BREAST CANCER FIRST YEAR OF TREATMENT IS ABOUT 35-40,000 DOLLARS F YOU WAIT FOR SIX MONTHS BEFORE YOU GET INTO CARE, YOU'RE LOOKING AT ABOUT 90,000 DOLLARS FOR THE FIRST YEAR OF TREATMENT. SO WE ARE LOOKING AT IMPACT ON QUALITY OF LIFE AND QUANTY OF LIFE. SO THESE ARE SOME OF THE DIFFERENT THINGS WE DEAL WITH. NOW NATIVE-AMERICAN CANCER EDUCATION SURVIVORS IS ONE OF OUR PROGRAMS THAT STARTED AS A RESEARCH GRANT AND EVOLVED INTO AN OVERALL EDUCATIONAL PROGRAM. AND WITH NACES, THIS IS THE LARGEST INDIGENOUS SURVIVORSHIP SUPPORT NETWORK IN THE WORLD. WE DO HAVE SOME NEW ZEALANDERS WHO ARE IN HERE. WE ARE STARTING TO GET AUSTRALIAN ABORIGINAL. WE ARE WORKING WITH THE NORTHERN TERRITORY WHERE THE MAJORITY OF AUSTRALIAN ABORIGINAL LIVE TO WITH WITH THEIR PROGRAM AS WELL AS TO HELP THEM START A PATIENT NAVIGATION PROGRAM THROUGHOUT THE RURAL REGIONS OF THE NORTH TERRITORY AND AUSTRALIA. MUCH OF THE WORK IS BASED ON WHAT WE LEARNED FROM THE NACES PROGRAM. SO IT'S WEB-BASED AND QUALITY OF LIFE. IT WAS ORIGINALNY DESIGNED FOR BREAST CANCER PATIENTS. BUT WHEN YOU WORK WITH UNDER SERVED COMMUNITIES PEOPLE SAY, WHAT ABOUT US? WE STARTED VOLUNTEERING TIME AND EXPANDING DIFFERENT PARTS OF THE ASPECT OR OF THE PROGRAMS TO DIFFERENT TYPES OF CANCERS SO IT IS NOT LIMITED TO BREAST CANCER. IT DOES INCLUDE BOTH GENDERS. AND OF COURSE IT IS FREE PROGRAM. THE LIMITATIONS IS THAT WE HAVE LIMITED ACCESS, ALTHOUGH IT IS CONSTANTLY IMPROVING IN INDIAN COUNTRY. WE ALSO WHEN I LOOK AT MONTHLY REPORTS OF WHO IS USING OUR WEBSITE AND WHICH PAGES THEY ARE USING AND WHICH HANDOUTS THEY ARE PLAYING WITH, THAT EVERY MONTH WE HAVE ABOUT 3% OF OUR USERS, FORMER REPUBLIC OF THE USSR. A LOT FROM CHINA. EVERY MONTH. AND A LOT OF THIS IS BECAUSE THE MATERIAL THAT IS ON THE NACES PAGE, THE MAJORITY OF MATERIAL IS WRITTEN BETWEEN GRADE LEVEL 5 TO 7. SO WE GET A LOT OF INTERACTION WITH PEOPLE WANTING TO HAVE THIS. SO, WE HAVE INSUFFICIENT FUNDING TO EXPAND SOME COMPONENTS OF THIS. WE DO HAVE FOR EXAMPLE THE SIDE BARS ARE STORY TELLERS, CARICATURES AND MADE UP OF THREE REAL SURVIVORS THAT WE PUT INTO A SIGNATURE AND WE DO THE BACK STORY. I'M THE ONLY ONE WHO KNOWS THE REAL PEOPLE. SOME PEOPLE EXPERIENCE TOO MUCH STIGMA BACK IN THEIR COMMUNITY THAT THEY WOULD BE REQUESTED TO BE REMOVED FROM TRIBAL COUNCIL AND FROM OTHER TYPES OF LEADERSHIP ROLES IF THEIR CANCER STATUS IS KNOWN. IF YOU ARE A SACRED PIPE HOLDER GOING THROUGH CHEMO, YOU'RE NOT ALLOWED TO TOUCH THE SKYPE IF YOU GIVE IT AWAY YOU CAN'T ASK TO HAVE IT BACK AFTER YOU'RE DONE WITH YOUR CHEMO. SO A LOT OF DIFFERENT SPIRITUAL ISSUES THAT COME INTO PLAY. SO THE STORY TELLERS ALLOW PEOPLE TO STILL SHARE WHAT THEY LEARNED WITH OTHER PEOPLE SO THAT THEY DON'T GO THROUGH THE SAME EXPERIENCE THAT THE SURVIVOR DID HERSELF OR HIMSELF. AND YET THEY PROTECT THEIR IDENTITY. WE ALSO HAVE STORIES ON THE SITE THAT ARE -- WE HAVE 85 CANCER SURVIVORS SHARING EXCERPTS OF THEIR EXPERIENCE WITH CANCER. THESE ARE NOT DIGITAL STORIES. WE STARTED COLLECTING THESE AND PUTTING THEM ON OUR WEBSITE IN 1996. SO WE HAVE BEEN COLLECTING THESE FOR QUITE A WHILE. THIS IS THE NACES TREE AND IT BASICALLY, WE HAVE A LITTLE HUMMINGBIRD. WHEREVER THE HUMMINGBIRD TELLS YOU WHERE YOU ARE ON THE TREE SO PEOPLE CAN JUMP AND MOVE AROUND THE TREE. THIS IS THE MOST COMMON PAGES. THERE IS MORE THAN 5000 PAGEOS OUR WEBSITE AND THE MAJORITY ARE UNDER THIS SEGMENT AND WE HAVE PEOPLE WHO ARE COMING INTO IT ALL THE TIME TO USE IT. AT THE TOP HERE YOU SEE SOME OF OUR NAVIGATORS. LEASE IS OUR EXECUTIVE DIRECTOR NOW BUT SHE STARTED AS ONE OF OUR LEAD PATIENT NAVIGATORS IN 2002. AND WE STARTED OUR PATIENT NAVIGATION PROGRAM WITH SOME OF OUR STAFF IN 1994 AFTER WORKING WITH HAROLD FREEMAN. SO WE ARE THE FIRST AMERICAN INDIAN PATIENT NAVIGATIONAL PROGRAM IN THE UNITED STATES. SO, THESE ARE VOLUNTEERS WHO PICK UP THE PHONE. SO IT'S NOT AVAILABLE ALL THE TIME FOR ANYTHING. NOW, I'M GOING TO MOVE TO THE M HEALTH STUDY. IN INDIAN COUNTRY, NOT TRUE FOR ALASKA. ALASKA NATIVES DO NOT USE CEREMONIAL TOBACCO, PER SE. CEREMONIAL USE OF TOBACCO IS REALLY SOMETHING IN THE LOWER 48 STATES. EXAMPLE THIS IS A TOBACCO GIFT, JUST RECEIVED IT LAST WEEK HELPING A YOUNG PERSON PURSUE THEIR CAREER AND WHENEVER YOU ASK SOMEONE TO DO SOMETHING, YOU ALWAYS GIVE TOBACCO. WE SPOKE TOBACCO. WE DON'T NECESSARILY INHALE TOBACCO. AND IF YOU ARE EXPOSED TO OUR SPIRITUALLY-GROWN TOBACCO, YOU COULD NOT INHALE IT. IT IS SO HARSH. ALL THE COMMERCIAL STUFF HAS ALL THESE THINGS TO MAKE IT SOOTHER. YOU WOULD TRY TO BREATHE THIS, YOU WILL BE HACKING FOR A LONG TIME. SO WHEN WE TALK ABOUT CEREMONIAL YEWS OF TOBACCO FOR US. TOBACCO IS A GIFT. MANY DIFFERENT STORIES HOW WHITE BUFFALO WOMAN OR OTHER PEOPLE CAME AND GIFTED US WITH THIS SACRAMENT. TOBACCO CAMPAIGNS THAT SAY ALL TOBACCO IS BAD, YOU IMMEDIATELY TURN OFF OUR ENTIRE COMMUNITY. FOR US IT'S A SACRAMENT AND PART OF RELIGION AND PART OF SHOWING HONOR AND RESPECT. TOBACCO SMOKE GOES TO THE CREATOR. HE HEARS OUR PRAYERS. WHEN WE USE THE TOBACCO SMOKE IN A RESPECTFUL WAY. SO, WHEN WE LOOK IN LOOKING AT THINKING ABOUT THE MAP THAT WAS UP THERE OF NORTHERN PLAINS AND SOUTHERN PLAINS AND ALASKA, IN THE NORTHERN PLAINS, WHICH IS WHERE DANIEL PETER WHO IS THE SCREEN HERE, HE IS THE PRINCIPAL INVESTIGATOR OF THIS STUDY AND HE IS ABSOLUTELY WONDERFUL RADIATION ONCOLOGIST. 60-70% OF THE ADULT AMERICAN INDIANS LIVING ON PINE RIDGE, ROSE BUD AND INDIAN RAPID CITY ARE DAILY USERS OF CIGARETTES, COMMERCIAL CIGARETTES OR MANUFACTURED TOBACCO. SO WE ARE NOT TALKING ABOUT TRADITIONAL USE IN THIS STUDY. AND WE DO HAVE ITEMS ASKING PEOPLE IF THEY QUIT SMOKING, WHAT WILL THEY DO WHEN THEY GO TO CEREMONY? IF YOU GO TO CEREMONY AND YOU'RE HANDED THE PIPE, DO YOU PUFF? IS THAT GOING TO MAKE YOU WANT TO START SMOKING TOBACCO AGAIN? AND WE HAVE LEARNED QUITE A FEW DIFFERENT THINGS ABOUT APPROPRIATE WAYS TO HAGGED IT. MANY TIME WE TALK ABOUT TOBACCO BUT YOU HAVE IN THE PIPE ARE A TYPE OF TOBACCO OR ANOTHER TYPE IS RED WILLOW. T'S NOT EACH TOBACCO. SO THERE ARE THINGS WE TIE INTO SPIRITUALITY WITH TOBACCO THAT CREATES SOME ADDITIONAL CHALLENGES AND YET WE THINK THAT WE HAVE WAYS TO HANDLE IT IF SOMEBODY QUITS SMOKING THEY CAN STILL TAKE PART IN CEREMONY WITHOUT GOING BACK TO BEING A SMOKER AGAIN. BUT, BECAUSE OF THE INNATE HEART OF TOBACCO IN OUR COMMUNITY, VERY DIFFICULT TO ADDRESS THIS WHOLE ISSUE. AND WE HAVE CERTAINLY HAD A LOT OF CHALLENGES IN THIS STUDY BUT AGAIN THAT IS WHY THEY CALL IT RESEARCH, RIGHT? BECAUSE WE DEFINITELY HAD THEM. THESE ARE MEMBERS OF OUR RESEARCH TEAM. SO WE HAVE OUR IT BRANCH WORKING WITH M HEALTH OR CELL PHONE APPLICATIONS BOTH ON THIS AND SBIR PROJECT. MARK IS FROM KENTUCKY. WE HAVE MANY OF OUR CREW IS FROM SOUTH DAKOTA. BUT THERE IS SOME OF US FROM THE COLORADO AREA AS WELL AS IN WISCONSIN. SO IT'S A DIVERSE TEAM BUT WE ARE PRIMARILY BASING OUR PROJECT. SO THIS IS SOUTH DAKOTA SO IT LOOKS SQUARE BUT IN INDIAN COUNTRY YOU'RE LOOKING AT THE THREE COMMUNITIES WHERE WE ARE WORKING IS IN A RURAL TOWN. RAPID CITY. ANY OF YOU HAVE BEEN THERE, YOU KNOW THIS IS NOT A CITY. IT'S DEFINITELY A LOVELY LITTLE FRONTIER TOWN. AND PINE RIDGE AND THEN ROSE BUD. AND THERE ARE UNIQUE POLITICAL ISSUES WITH BOTH OF THESE PLACES THAT CREATE SOME CHALLENGES. OUR AIM TO TRY TO FIGURE OUT WHAT FACTORS WILL PREDICT THE CONTINUING TO SMOKE AMONG NORTHERN PLAINS AMERICAN INDIANS AND WE WANTED TO FIGURE OUT WHAT DIFFERENT ISSUES AND RISK FACTORS WERE THAT PEOPLE CONTINUE TO SMOKE EVEN THOUGH THEY KNOW ABOUT THE HAZARDS OF SMOKING. AND THEN WE WERE TOLD THE THEORY OF PLANNED BEHAVIOR MAY NOT HAVE BEEN THE BEST THEORY TO SELECT FOR THIS. AND WE WENT TO ASSESS HOW WELL DID THE THEORY OF PLANNED BEHAVIOR WORK FOR TOBACCO CESSATION PROJECT? AND SO THAT IS BASICALLY WHERE WE ARE IN OUR OUTCOME. WE WANTED TO LOOK AT SELF REPORTED SMOKING CESSATION CONFIRMED BY CARBON MONOXIDE TESTING. WE DO TRY TO TRIANGULATE OUR DATA WHEN WE CAN. SO THE ELIGIBILITY, THEY HAD TO BE AMERICAN INDIAN 18 YEARS OLD LIVING IN ONE OF THE THREE SITES. THEY HAD TO BE A DAILY USER. AND AGAIN, WE WERE NOT CONCERNED ABOUT TRADITIONAL USE OR CEREMONIAL YEWS OF TOBACCO AS AN ELIGIBILITY. THEY HAD TO BE WILLING TO USE NICOTINE REPLACEMENT THERAPY TO TAKE TESTS AND STOP SMOKING FOR THREE MONTHS AND HAD TO BE WILLING TO TAKE PART IN MOTIVATION INTERVIEWING COUNSELING SESSIONS AND TO TAKE PART IN DAILY TEXT MESSAGING AND HAVE UP TO 11 VISITS WITH THEIR NAVIGATORS. WE LOOK AT THE DEMOGRAPHICS OF WHO WE HAVE HAD TAKING PART IN THIS, 64% ARE FEMALES WHICH IS NOT UNUSUAL IN ANY OF THE PUBLIC HEALTH INTERVNTIONS WE HAVE DONE IN INDIAN COUNTRY. THE AGES IF YOU LOOK AS ALMOST TWO-THIRDS ARE BETWEEN 21 AND 49 YEARS OF AGE AND ABOUT WOB THIRD IS OLDER -- 1/3. AND THE EDUCATION B46% HAVE A HIGH SCHOOL OR LESS. THIS IS VERY TYPICAL OF OUR POPULATION AND ALMOST ALL -- IF YOU LOOK AT OUR DATA, SURVIVOR SHIP DATA, IT'S 46% HAVE A HIGH SCHOOL OR LESS EDUCATION WHICH IS WHY WE HAVE TO KEEP THE LITERACY LEVEL EASIER TO UNDERSTAND. WE HAVE ALTERNATIVE WAYS TO EXPLAIN A LOT OF INFORMATION. NOW THERE ARE FOUR INTERVENTION GROUPS AND THEY HAVE TO BE WILLING TO USE NICOTINE REPLACEMENT THERAPY. IT'S A CHALLENGE. SHORTLY AFTER WE WERE AWARDED, PINE RIN PHARMACY AND THEIR FORMULARY DECIDED THEY WOULD NO LONGER CARRY NICOTINE REPLACEMENT PRODUCTS. SO THEY HAD TO METED WITH THE PEOPLE ON THE RESERVATION SAY WILL YOU SIGN THIS LETTER OF AGREEMENT. WE HAVE AN ORDINANCE WE ARE WORKING TOGETHER AND WHAT ARE WE GOING TO DO? WE NEED TO HAVE ACCESS TO THIS. HE WAS ABLE TO GET AN EXEMPTION. BUT IT TOOK QUITE A BIT OF NEGOTIATION TO GET SOME OF THAT IN. THE PRECESSATION COUNSELING, WE HAVE A MINIMAL GROUP AND INTENSE GROUP. EACH COMPONENTS THERE IS THE FIFTH VISIT, IT IS THE CESSATION VISIT AND I'M ONLY GOING TO SHOW YOU DATA UP TO THE CESSATION VISIT. THIS IS IN-PERSON COUNSELING TO HELP PEOPLE CONTINUE TO BE SMOKE-FREE FOR THOSE WHO MAKE IT. AND THEN WE HAVE THE M HEALTH. SO IN THE MORNING THEY GET A QUERY THAT SAYS WHAT TYPE OF MESSAGE WOULD YOU LIKE TO HAVE TODAY? AND THEY CAN SELECT WHATEVER TYPES. SO THEY CAN SAY THEY WANT A STRATEGIC TIP. THEY CAN TAILOR THE MESSAGE FOR THAT INDIVIDUAL ALONE SO IF I SAY I WANT TO QUIT SMOKING SO THAT MY GOD DAUGHTER, KELLIE, I'M ALIVE TO SEE HER GRADUATE FROM COLLEGE. I CAN HAVE THAT MESSAGE COME TO ME AND IF I DRAFT A PERSONAL MESSAGE, IT COMES TO ME MORE FREQUENTLY THAN THE OTHER TYPES OF M HEALTH MESSAGES. SO, WE DID THE RANDOMIZATION. THIS IS SHOWING WHEN THIS IS -- THIS MEANS INTENSE, INTENSE, INTENSE FOR ALL FOUR OF THE COMPONENTS AND THIS IS OBVIOUSLY INTENSE AND INTENSE, MING MALL, INTENSE. BUT IT SHOWS YOU THE RANDOMIZATION WAS QUITE SUCCESSFUL IN GETTING PEOPLE INTO THE DIVERSE GROUPS. IF YOU LOOK AT THE COMPONENTS FOR THE NICOTINE REPLACEMENT, IF THEY ARE MINIMAL, THEY GOT THE NICOTINE PATCH ONLY. IF IT WAS INTENSE, THEY HAD THE PATCH PLUS ONE OCCASIONALLY TWO OTHER NICOTINE REPLACEMENT THERAPY PRODUCTS. SO IT COULD BE A NASAL SPRAY. IT COULD BE THE GUM, ANY NUMBER OF THINGS. THE PRE-CESSATION COUNSELING. THEY HAD TWO IN-PERSON COUNSELING SESSIONS BUT THEY DIDN'T GET A FOURTH VISIT. VISIT 5 IS THE QUIT DATE. SO THIS IS -- VISIT 4 IS ONE WEEK BEFORE THEIR QUIT DATE. AND THE INTENSE GROUP THEY GOT THREE, INCLUDING THE TELEPHONE VISIT ON NUMBER 4. THE POST CESSATION, THE MINIMAL HAD TWO MORE IN-PERSON SESSIONS AND THEY BUILD UPON WHATEVER THE ISSUES WERE FOR THEM ON THE PREVIOUS VISITS. AND THE INTENSE HAD ADDITIONAL SESSION. THE M HEALTH THEY GOT THE MORNING QUERY, WHAT KIND OF MESSAGE DO YOU WANT TO GET TODAY? AND THEY RECEIVED TWO MORE MESSAGES DURING THE DAY. THE TENSE GROUP HAD THE MOURNY QUERY PLUS FOUR MORE MESSAGES DURING THE DAY. SO IT'S BETTER THAN KIND OF FUN TO DO THIS. WHEN WE LOOKED AT RECRUITMENT STRATEGIES, THE COMMUNITY RESEARCH REPRESENTATIVES ARE NAVIGATORS H INFORMATIONAL BOOTS AT COMMUNITY EVENTS AND POWWOWS AND A VARIETY OF THINGS. POSTERS AND THE CLINICS, PHARMACY AREAS WITH PERMISSION OF INDIAN HEALTH SERVICE OR THE CLINICAL SETTING. SEVERAL RADIO SHOWS, TALKING ABOUT WHY IT'S IMPORTANT TO NOT BE SMOKING AND WHAT TYPE OF HEALTH IS AVAILABLE. TRIBAL NEWSPAPER HAD DIFFERENT PINE RIDGE, WE HAD A PHARMACIST- THAT SAID, THIS IS TERRIFIC. WE WANT TO SUPPORT THIS. AND HE ACTIVELY RECRUITED PEOPLE INTO THE STUDY. AT ROSE BUD, IT WAS A VERY DIFFERENT SITUATION. IT WAS VERY DIFFICULT TO RECRUIT PEOPLE TO THE INTERVENTION. SO THIS ENDED UP, THE PHARMACIST REFERRAL WAS VERY, VERY HELPFUL TO US. SO, WE DID THE BASELINE COLLECTION. THEY ARE RANDOMIZED INTO THE GROUP. THEY HAD THE INTERVENTION VISITS 1-5 -- IT IS ACTUALLY 1-4. THEY IDENTIFIED THE QUIT DATE AND THEY TALK ABOUT STRATEGIES THEY ARE GOING TO USE AND THEN THEIR SUPPORT THEY HAVE iPADS THAT AS SOON AS YOU LOAD IN THE CODE FOR THE PATIENT, IT TELLS YOU WHAT YOU'RE SUPPOSED TO DO ON THAT GROUP SO YOU DON'T INADVERTENTLY DO INTENSE INTERVENTION IF YOU'RE IN THE MINIMAL INTERVENTION GROUP. SO THEY HAVE A SCRIPT TO HELP THEM DURING EACH VISIT. THAT iPAD APPLICATION HAS BEEN ESSENTIAL. IT'S ALSO BETTER THAN USING THE INTERNET BECAUSE WITH THE IPAD, THE DATA COULD BE TEMPORARILY STORED. WHEN YOU'RE OUT IN MY COMMUNITY, YOU DON'T HAVE INTERNET ACCESS FOR LARGE SEGMENTS. AND THERE ARE VALLEYS YOU DON'T HAVE AT ALL. BUT AS YOU'RE COMING OUT OF THE VALLEY, THEN YOUR iPAD STARTS TO GO DING DING DING. BECAUSE IT'S SENDING ALL YOUR DATA IN THAT R. OF WHAT YOU COLLECTEDDED. SO ONCE YOU HAVE AN INTERNET CONNECTION -- WE FOUND USING A TABLET HAS BEEN MORE EFFECTIVE IN HAVING REALTIME DATA BEING RECORDED. AND THEN VISIT 6-11 THERE IS FOLLOW-UP MOTIVATIONAL œINTERVIEWING AND TRYING TO REINFORCE WHAT IS GOING ON. WHEN WE LOOK AT SELF REPORTED AT VISIT 5. THERE IS 256 PEOPLE RECRUITED INTO THIS STUDY. THEY ALL HAD TO BE CONFIRMED AS SMOKERS, VERIFIED BY CARBON MONOXIDE TEST. I'LL TELL YOU A PROBLEM WITH THAT IN JUST A MOMENT. IT WASN'T A PROBLEM WITH THE TEST. SO WHAT WE HAD WHO WERE STILL SMOKING BUT THEY STILL WERE ACTIVE IN THE STUDY, ACTIVE IN THE STUDY MEANS THEY WERE STILL RESPONDING TO M HEALTH. THAT WAS OUR BEST WAY TO FIGURE OUT IF THEY WERE REALLY DOING ANYTHING BECAUSE THEY HAD TO BE RESPONDING TO M HEALTH MOST DAYS. AND SOME HAD TRIALS THEY NEVER LEFT THE VALLEY LIKE IN PINE RIDGE. YOU HAVE A VALLEY. IF YOU DON'T LEAVE THE VALLEY, YOU CAN'T GET M HEALTH, YOU JUST DON'T HAVE INTERNET ACCESS. SO WE HAVE THOSE THINGS THAT INTERFERE A LITTLE BIT. BUT NOTE THE NUMBERS HERE. WE REALLY HAVE JUST SLIGHTLY OVER 100 PEOPLE WHO MADE IT TO VISIT 5. SO, WE HAVE BASICALLY 148 PEOPLE WHO COULD NOT MAKE IT EVEN TO THE QUIT DATE, WHICH IS IMPORTANT. AND AGAIN IT'S SO MUCH EMBEDDED IN THE COMMUNITY. WHAT WE ALSO HAD IS THAT WE LEARNED A LOT OF THINGS. AND PHONE BILLS WERE INCREDIBLE. SO IN THE STUDY, WE HAD ALLOCATED TWO,400 DOLLARS A MONTH FOR PHONE BILLS WHILE PEOPLE WERE IN THE INTERVENTION 2400 DOLLARS -- WE HAD MANY PEOPLE TO HAVE FUNDS. THEY RECEIVED THE PHONE ON THE SECOND VISIT. THEY WERE SO EXCITED TO HAVE FUNDS, THEY WERE USING 411 CALLS AS MUCH AS 500 DOLLARS PER PHONE FOR NINE DIFFERENT PARTICIPANTS. OUR PHONE BILLS INSTEAD OF BEING 2400 A MONTH WERE 9000 DOLLARS A MONTH FOR SIX MONTHS OF THE STUDY. INCREDIBLE. AND IF IT WEREN'T FOR INDIRECT FUNDS WE WOULD HAVE HAD TO STOP THE STUDY. BUT DANIEL GOT THEM TO RELEASE FUNDS TO SUPPORT THE PHONE CALLS. PEOPLE NEVER HAD PHONES. THIS WAS A SIGNIFICANT ISSUE. NEVER HAVING A PHONE, NOT KNOWING HOW TO CHARGE IT. HAVING YOUR GRANDKIDS COME UP AND SAY, WOW! POPPY, YOU GOT A PHONE. CAN I USE THE PHONE? AND WHAT IS POPPY GOING TO SAY? OF COURSE! AND THEN WE LOST THE PHONE. SO, THAT WAS A SIGNIFICANT THING. WE HAD ESTIMATED WE WOULD HAVE A 10% LOSS OF PHONES IN THIS STUDY. WE ACTUALLY HAD A 20% LOSS OF PHONES. WHAT WORKED OUT TO OUR BENEFIT IS THAT WHEN WE SUBMITTED THE GRANT, THE AVERAGE COST FOR THE PHONES WAS 50 DOLLARS FOR A DUMB PHONE AND WE ENDED UP GETTING THEM FOR 30 DOLLARS EACH. SO WE WERE ABLE TO SUPPORT THAT ADDITIONAL. WE HAVE PEOPLE LIE ABOUT SMOKING. THEY WANTED A PHONE SO BADLY, THEY WOULD GO INTO THE CASINO AND THEY WOULD HANG OUT IN THE SMOKING SECTION AND THEN GO MEET THE COMMUNITY RESEARCH REPRESENTATIVE AND TAKE THEIR CARBON MONOXIDE TEST AND -- BUT THEN OTHER PEOPLE IN THE COMMUNITY SAID, YOU KNOW, ROSA, SHE IS NOT REALLY A SMOKER. SHE JUST WANTS A PHONE. AND SO THE CRRs WOULD HAVE TO BUST PEOPLE AND SAY, YOU CAN'T BE IN THE STUDY. WANT A PHONE. SO THIS BECAME A CHALLENGE THROUGHOUT THE ENTIRE STUDY. PHONES WERE A CHALLENGE THE ENTIRE TIME. BUT THE CRRs CAUGHT THEM AND DIDN'T LET THEM DO IT. THE PHARMACISTS REFERRAL WAS INCREDIBLY EFFECTIVE. WE WORKED LIKE HECK TO TRY TO GET THE PHARMACIST ON ROSE BUD TO DO SOMETHING SIMILAR AND HE JUST SAID, I'M NOT INTERESTED. I DON'T BELIEVE IN NICOTINE REPLACEMENT. THESE ARE ALL A BUNCH OF SMOKERS. NO. WE ARE NOT GOING TO -- HE JUST WOULDN'T DO IT. HE WANTED TO ENCOURAGE USE OF CENTEX OR OTHER PRESCRIPTIONS AND WE WERE NOT ALLOWED TO DO THAT BECAUSE IT'S NOT IN THE FORMULARY FOR IHS PHARMACIES ON MANY OF THE FACILITIES AND IF YOU HAVE PRIVATESHIPS YOU CAN GET IT BUT THEN IT CREATED A TOTALLY NEW CONFOUNDER. WE SAID FOR THE STUDY, WE CANNOT USE PRESCRIPTION MEDICATIONS NOR CAN WE ALLOW THE USE OF E-CIGARETTES. AND AT THE TIME WE STARTED, WE WEREN'T CERTAIN OF WHAT THE HEALTH HAZARDS WERE BUT WE COULDN'T IMAGINE ANYTHING GOOD COMING OUT OF IT. SO WE WERE PRETTY HAPPY WE STUCK TO OUR GUNS AND SAID, IF YOU'RE GOING TO USE e-CIGARETTES, THEN YOU NEED TO STEP AWAY FROM THE STUDY ITSELF. SO, THE OTHER THING -- THE 12% RETURNING AT VISIT 5, SO THE VISIT 5 IS THEIR QUIT DATE. VISIT 6 IS A WEEK LATER. VISIT 7 IS TWO WEEKS LATER AND THEN WE ARE MEASURING THEM AT 9 MONTHS, AT 12 MONTHS AND 18 MONTHS TO TRY TO SEE WHAT ACTUALLY IS HAPPENING. WHAT THINGS ARE IMPACTING. AND MARK AND I JUST LOOKED AT THESE DATA A WEEK AGO AND IT ACTUALLY IS A HIGHER PERCENTAGE RETURNING. NOW, THIS IS NOTHING THAT WILL HELP OUR STUDY, PER SE BUT WHAT IT DOES HELP IS THE NUMBER OF TIMES YOU RESTART OR THE NUMBER OF TIMES YOU TRY TO QUIT. INCREASES YOUR LIKELIHOOD OF SUCCESS IN THE FUTURE. SO WE KNOW THAT SOME PEOPLE EVEN IF THEY ARE NOT SUCCESSFUL ON THE STUDY, ARE GOING TO BE SUCCESSFUL IN STOPPING SMOKING AT A LATER DATE BUT WE JUST CAN'T COUNT THEM IN OUR DATA. BUT WE ARE TRYING TO TRACK THEM. WE ALSO HAVE AN INFORMAL WHERE WE ARE TRYING TO TRACK PEOPLE WHO SAID I COULDN'T STAND NICOTINE REPLACEMENT THERAPY. I NEEDED TO BE TO SHAN TEXT. WE ARE LIKE OKAY, YOU WANTED TO GO TO CHAN TEXT, SO WHAT IS HAPPENING? I WOULD NOT BE USING IT IF IT WEREN'T FOR THE STUDY. BUT WE CAN'T COUNT THEM IN OUR DATA EITHER BECAUSE THEY ARE NOT FOLLOWING OUR STUDY PROTOCOL. SO WE HAD THOSE BACK STORIES WE ARE PLAYING WITH. SO, SOME OF THE THINGS THAT ARE CHALLENGING ABOUT THE STUDY IS THAT SMOKING BEHAVIOR IS SO EMBEDDED IN OUR COMMUNITY. EXAMPLE, AS A CHILD MY AUNTIES USED TO SCOLD ME, YOU NEED TO SMOKE TO HELP YOUR TRIBE. BECAUSE WE HAVE TOBACCO SMOKE SHOPS ON OUR RESERVATIONS IN OUR COMMUNITIES. AND I NEVER DID BECAUSE MY MOTHER WHO IS INDIAN D NOT SMOKE. AND IT'S LIKE, MY MOM IS INDIAN AND SHE DOESN'T SMOKE. I DON'T HAVE TO SMOKE. BUT THAT ISN'T THE -- IT REALLY IS TOLD YOU'RE BEING PATE ONTIC TO YOUR TRIBE TO BE A SMOKER. IT'S ALSO THE EMBEDDEDNESS OF THE SPIRITUALITY OF THE CEREMONIAL TOBACCO USE AND IT'S LIKE, IF IT'S GOOD FOR ME IN CEREMONIES WHY ISN'T IT GOOD EVERY DAY TO PRAY WITH A CIGARETTE? AND THERE ARE DIFFICULT THINGS. PAUL ORTEGA, AN APACHE HEALER, ADDRESSES THIS EFFECTIVELY AT ONE OF OUR GATHERINGS BECAUSE WE HAD SOME BIG INDIAN DUDES OUT AT THE BREAK SMOKING AND KNOCKING THEIR ASHES ON THE GROUND AND THEY SAID, PAUL, DON'T WORRY, WE ARE FRIENDS. WE ARE PRAYING. HE SAYS, YOU HAVE NO SACRAMENT THAT WAY. YOU DON'T DROP ISSUES ON THE GROUND IF YOU'RE PRAYING. HE SAYS DON'T YOU EVER TELL ME WHEN YOU'RE SMOKING A CIGARETTE YOU'RE DOING IT WITH RESPECT BECAUSE THIS IS NOT THE WAY YOU WALK AROUND -- LIKE SUGARING ON IT. BUT IT'S A SIGNIFICANT ISSUE BECAUSE IT GETS MIXED UP WITH CEREMONIAL AND HOW WE ARE BROUGHT UP. THIS SAY GOOD THING. BUT IT'S ONLY GOOD IF YOU NEWS TOBACCO OR THAT TOBACCO OR WHATEVER. WE DO FIND THAT OUR COMMUNITY STARTS AND STOPS MANY, MANY TIMES -- AND I DON'T KNOW HOW IT COM BEARS OTHER POPULATION GROUPS BUT WE ARE TRACKING WHAT HAPPENS AND WHEN PEOPLE AGAIN AS PART OF THE THEORY OF PLANNED BEHAVIOR F NAY GO BACK TO SMOKING, WHAT SETS IT OFF? TYPICALLY IT'S MAJOR CRISIS IN THEIR FAMILY THAT THEY GO BACK TO IT. THEY ARE LIVING IN POVERTY WITH A LOT OF THE ENVIRONMENTAL CHALLENGES THAT HAVE BEEN ADDRESSED BY THIS COUNCIL ON MANY DIFFERENT MEETINGS. AND THE CRISIS ARE REAL. IF SMOKING HELPS THEM TO FEEL CALMER, THEY ARE GOING BACK TO IT. AND SO IT'S LIKE WE NEED TO FIND OTHER WAYS TO STILL PROVIDE SUPPORT. WE ALSO WERE TOLD ONCE AGAIN WITH THE PHONES, THAT WE HAD AN AGREED UPON CONTRACT WITH THE PHONE COMPANY THAT PROVIDES SERVICES TO THIS AREA AND THEN WHEN WE GOT AWARDED, THEY SAID, WE CAN'T DO VIDEO TEXT MESSAGING. WAIT A MINUTE. WE ARE DOING VIDEO MESSAGING AS PART OF OUR CELL PHONE APP AND WE TESTED THEM AND THEY WORK ON THE DUMB PHONE AND THEY SAID, NO. THEN IT WILL COST YOU AN EXTRA 50 DOLLARS PER PHONE. AND WE ARE ALREADY LOOKING AT ESTIMATED 2400 A MONTH TO 9000 A MONTH FOR SEVERAL MONTHS OF THIS STUDY. THAT WE COULDN'T ADD THE ADDITIONAL. SO WHAT WE DID INSTEAD, WE COLLECTED DIFFERENT STORIES AND THIS IS FRANK. THIS IS A WONDERFUL YOUNG MAN. THIS IS OUR FOR PROFIT WEBSITE, OUR NON-PROFIT IS THE ONE, BUT THIS IS THE ONE WHERE WE HAVE GENETIC EDUCATION AND EARTH TYPES OF ISSUES AS WELL AS PHYSICAL ACTIVITY FOR SURVIVORS. WHEN THE CRRs WERE MEETING WITH PEOPLE THEY COULD SHOW THEM -- >> THERE IS A DISTINCTION BETWEEN CEREMONIAL USE OF TOBACCO AND CIGARETTE SMOKING AND IF YOU LOOK BACK, OUR ANCESTORS HAVE BEEN USING -- PRAYING WITH IT FOR THOUSANDS OF YEARS AND TOBACCO WAS BROUGHT IN BY THE PEOPLE WHO COLONIZED US AND WANTED US TO DIE. WHY WOULD WE USE THAT? ANOTHER FORM OF THEM TRYING TO KILL US. >> YOU CAN SAY HE HAS SEVERAL MORE. THERE ARE NINE OTHER EXCERPTS OF STORIES. THEY ARE ALL FROM NORTHERN PLAINS PINE RIDGE, ROSE BUD AND RAPID CITY, THAT ARE ON HERE. DO I JUST CLICK TO GET OUT OF IT AGAIN? SO SOME OF THE MESSAGES ARE GLANCABLE. SOME ARE MESSAGES THEY RESPOND TO. THE ONLY WAY WE CAN STILL TAKE ADVANTAGE OF THE VIDEO STORY IS BECAUSE IT WAS SO NICE TO HAVE THE VIDEO STORIES. EVERY ONE OF THE PEOPLE WE INTERVIEWED WE INCLUDED THEIR MESSAGES WITHIN TEXT MESSAGES. BUT IT'S DIFFERENT TO SEE A PICTURE. DEFINITELY IT WAS MORE POWERFUL. SO THIS IS SHOWING WHAT THE PHONE LOOKS LIKE AND IT'S ASKING YOU WHAT KIND OF MESSAGE. ONE IF YOU WANT A REMINDER, TWO IF YOU WANT TO REDUCE THE NUMBER OF CIGARETTES AND THREE IF YOU WANTED MESSAGES FOR QUITTING. 4 FOR CRAVING AND 5 IS FOR TIPS, 6 IS FOR IF YOU HAD A SLIP. 7 IS FOR DEALING WITH YOUR MOOD AND 8 IS FOR MOTIVATION AND 9 IS NO PREFERENCE. THERE IS A ZERO OPTION AND THAT IS YOUR PERSONAL MESSAGE. SO AGAIN, YOU HAVE THE ABILITY TO TOTALLY CHANGE IT. AND THIS WAS, CHILDREN LEARN FROM WHAT THEY SEE. WE NEED TO SAID ANG EXAMPLE OF TRUTH IN ACTION AND THAT IS FROM AN AMERICAN INDIAN. THIS IS ANOTHER ONE OF THE MESSAGES, TO DO SOMETHING WITH YOUR HANDS, DO SOMETHING SUCH AS DRUMMING, CUTTING WOOD, DOING GRASS OR FANCY DANCING. EVERY TIME GRANDMA WANTED A CIGARETTE, SHE PULLED OUT A WEAVE TO WEAVE A BASKET. WHAT CAN YOU DO TO KEEP YOUR HANDS BUSY? THAT'S AN EXAMPLE THEY HAD TO RESPOND TO. THE TOP ONE, THIS IS A AMBULANCABLE MESSAGE. WE HAVE QUOTES FROM -- GLANCABLE MESSAGE. MANY KNOW ABOUT THE JAPANESE OLYMPICS WHEN HE JUST KICKED TURB AND LAKOTA SIOUX WONDERFUL. BUT VERY, VERY MOTIVATIONAL INDIVIDUAL TALKING ABOUT HOW TO USE TOBACCO AND RESERVE TOBACCO FOR CEREMONIAL YEWS THANK YOU DON'T USE HABITUAL TOBACCO. CEREMONIAL USE AND YOU DON'T USE TOW HABITUAL TOBACCO. HOW MANY DID NOT REPLY AND HOW MANY REPLIED? THE CCRs ASKED THEM WHAT WOULD HAVE MADE INCREASE THE LIKELIHOOD OF YOU REPLYING TO% THE MESSAGE? A LOT OF THEM HAD GLANCABLE MESSAGES SO THEY DEPENDENT NEED TO REPLY. AND THE OTHERS DEPENDENT GET THE MESSAGE UNTIL THE NECKS DAY SO THEY HAD TWO MESSAGES WAITING THE NEXT DAY AND THEY DIDN'T KNOW WHICH ONE TO DO. WHEN YOU LOOK AT HOW MANY PEOPLE IS WERE REPLYING, WE ARE NOT SEEING GREAT DIVERSITY. WHAT WE LOOKING AT FOR THIS ONE IS THE LAST LETTER F IT IS M OR I ON THESE ABBREVIATIONS. WE ARE FINDING THAT IS PRETTY NICE. WE LOOK AT WHAT WAS THE AVERAGE SATISFACTION WITH NICOTINE REPLACEMENT THERAPY. IT WAS ABOUT 60%. NOW I THINK THIS IS A LITTLE LOWER THAN IT IS FOR NON HISPANIC WHITES BUT I'M NOT CERTAIN HOW DIFFERENT IT IS. WE HAD A LOT OF SELF REPORTS OF ALLERGIES AND NAUSEA AND JUST NOT HAVING ANY IMPACT OR ITCHINESS OR ALLERGIES. WHEN WE LOOKED AT BOTH THE PREAND THE POST COUNSELING CESSATION OR THIS IS THE MOTIVATIONAL INTERVIEWING, ONE WAS LOW, 10 WAS HIGH. 8.5 WAS THE EVALUATION FOR BOTH THE MINIMAL AND INTENSE GROUP. SO THAT'S COMING ALONG PRETTY NICE. AND HOW WELL HAS M HEALTH TEXT MESSAGING BEEN HELPFUL IN 87% SAID THEY AGREED IT WAS TO STRONGLY AGREED. WHEN WE LOOK AT CARBON MONOXIDE READING BY VISIT, THIS IS ON AVERAGE THEY WERE AT THEIR MEAN, ABOUT 14. AND YOU CAN SEE HERE BY VISIT 5 PEOPLE WERE ALREADY STARTING TO CUT DOWN ON THE NUMBER OF CIGARETTES THEY WERE SMOKING A DAY GETTING READY FOR THEIR QUIT DATE ON HERE. SO, WE JUST STARTED LOOKING AT THE OUTCOME DATA. AND WE HAVE SOME THINGS WE THINK ARE REALLY EXCITING. WE HAVE SOME THINGS THAT WE ARE GOING, SAY WHAT? AND WE'LL BE PUBLISHING THAT FAIRLY SOON. AND AGAIN, THANK YOU FOR ALLOWING ME TO SHARE A LITTLE BIT ABOUT NATIVE-AMERICAN CANCER RESEARCH CORPORATION AND A FEW OF THE PRELIMINARY FINDINGS FROM OUR STUDIES. QUESTIONS? [ APPLAUSE ] S. >> FLOOR IS OPEN. >> GREAT PRESENTATION. SO CONSIDERING ALL OF THE UPS AND DOWNS YOU HAD AROUND THE TECHNOLOGY PIECE, WHAT SILENT CONCLUSION IF YOU HAD TO DO IT ALL OVER AGAIN? WOULD YOU INCLUDE TECHNOLOGY AND THEN SECONDLY, WERE YOU ABLE TO TEASE OUT THE INTERVENTION EFFECTS OF CRR VERSUS THE USE OF TECHNOLOGY? >> THE CCRs ARE INVOLVED ANYWAY. >> IN THE DELIVERY. >> WITH ALL OF THE VISIT. THE CRR ARE THE NAVIGATORS. THEY CONDUCT THE ENTIRE INTERVENTION. SO WE ARE NOT TRYING TO TEASE THEM OUT BECAUSE WE ARE ALREADY ASSESSED THAT NAVIGATION WAS EFFECTIVE. SO WE DIDN'T NEED TO LOOK AT THAT COMPONENT, PER SE. WE WERE MORE INTERESTED IN THE OTHERS. WE WOULD USE TECHNOLOGY AGAIN. WE HAVE ALREADY. WE HAVE A ONGOING PILOT STUDY LOOKING AT PHYSICAL ACTIVITY FOR AMERICAN INDIAN CANCER SURVIVORS AND HOW A CELL PHONE APP WOULD WORK. ON THIS ONE, WE BOUGHT THEM SMARTPHONES. AND WE GOT A BETTER DEAL FROM THE PHONE COMPANY ON HOW WE WERE DOING DIFFERENT ISSUES. THE COMMUNITY REALLY WANTS TO HAVE THE M HEALTH TECHNOLOGY. THE QUALITATIVE ASSESSMENTS AND THE SUMMARIES THAT WE ARE GETTING FROM BOTH EVALUATING THE CRRs FROM WHAT THEY ARE TELLING US, PLUS WE HAVE BIWEEKLY WEBINARS WHERE WE DEBRIEF AND SAY WHAT HAPPENED? WHAT ARE YOU HEARING? WHAT IS DIFFERENT? WHAT DO WE NEED TO CHANGE? IF SOMETHING ISN'T WORKING, TELL US WHAT IT IS SO WE CAN HAVE A VERY RIGOROUS PROCESS EVALUATION ON IT. THE M HEALTH DEFINITELY LIKE HAVING THE VIDEO AS WELL AS STRAIGHT TEXT: WE DID AN INFORMAL PILOT STUDY LOOKING AT HOW MANY PEOPLE WERE USING ANY TYPE OF M HEALTH AND THE MAJORITY OF THE PEOPLE IN OUR COMMUNITY IT WAS OVER 65% WERE USING CELL PHONES PRIMARILY FACEBOOK TO COMMUNICATE WITH THEIR CHILDREN AND GRANDCHILDREN. FACEBOOK. SO, THEY SAID, NO, WE THINK WE CAN DO MORE ON PHONES. WE WANT TO DO MORE. SO THEY ARE INTERESTED. AND THE ACCESS ISSUES THAT WE HAVE FOR MANY AREAS HEADS IMPROVED. THE VALLEY I KEEP REFERRING TO IN PINE RIDGE, THEY DO NOT HAVE A CELL PHONE TOWER PLAN IN THAT AREA. AND POWER SAY, IDON'T WANT TO BE EXCLUDED IN YOUR FUTURE STUDIES JUST BECAUSE I LIVE IN THE VALLEY AND I WILL DRIVE OUT EVERY DAY AND I'LL GET UP ON THE HILL SO I CAN DO IT. SO LET ME STILL BE IN THE STUDY. SO THEY ARE VERY ADAMANT ABOUT IT. VERY POSITIVE ABOUT IT. >> DO YOU THINK YOU WOULD HAVE A DIFFERENT OUTCOME IF THE PARTICIPANTS HAD TO PAY FOR THEIR PHONE? THE HAD TO PAY THE BILL AND THE DATA PLANS? BECAUSE THAT WAS VERY CREATIVE TO OFFSET THE COST OF THE USE OF TECHNOLOGY. IT'S A BARRIER FOR MANY THAT WANT TO USE TECHNOLOGY. HOW DO YOU PAY FOR IT? >> WHAT WE HAVE RECOMMENDED AND NA WE WOULD NEVER BUY A PHONE AGAIN. WE WOULD NEVER BUY ONE. AND REALIZED WE WOULD MISS A LOT OF THE POPULATION BUT MAKE IT A REQUIREMENT THEY HAD TO HAVE A PHONE AND FOR A MONTHLY INCENTIVE WE WOULD PAY 30 DOLLARS A MONTH WHILE THEY STAY ACTIVE IN THE STUDY. THEY CAN USE THE 30 DOLLARS TO CONTRIBUTE TOWARDS THE PHONE BILL OR USE IT FOR GAS OR WHATEVER THEY WANT. BUT WE WOULD KEEP IT SEPARATE. WE TRIED TO DO THAT ON THIS STUDY AND RAPID CITY REGIONAL HOSPITAL WANTED TO RECEIVE ALL THEIR PHONE BILLS AND DO AN AUDIT ON THEIR PHONE BILLS IF WE TRIED TO PAY 30 DOLLARS TO PEOPLE WHO ALREADY HAD IT. WE DID HAVE SOME PEOPLE WHO HAD A SMARTPHONE AND THEY HAD THEIR DUMB PHONE AND THEY JUST KNEW THE DUMB PHONE WAS SUPPOSED TO BE FOR STUDY USE OTHER THAN THE COLLECT CALLS THEY DID. AND THE 411s WERE ASTOUNDING. IT'S LIKE WHAT COULD YOU POSSIBLY -- IT'S DOCTORS 4 FOR EVERY 411 CALL. YOU HAVE 500 DOLLARS A MONTH IN 411 CALLS FOR NINE PARTICIPANTS. AND THE CRRs KEPT SAYING, YOU'RE REALIZING THIS IS STUDY USE ONLY? YES. BUT I REALLY NEEDED TO KNOW. >> TO DO AN AUDIT OF THE 411 CALLS AND SEE. >> AMEN. >> LINDA, REALLY NICE PRESENTATION. THANK YOU VERY MUCH. I WANTED TO ASK YOU ABOUT THE PEOPLE THAT DID NOT RESPOND. 148. AND ASK YOU WHAT IS YOUR GUESS? DO YOU HAVE AN IDEA WHO WERE THE PEOPLE NOT RESPONDING? THEN THINKING ABOUT JENNIFER WHO DID SOME WORK ON TOBACCO CESSATION. SHE FOUND THAT GIVING PEOPLE SOCIAL SERVICES IN ADDITION TO THE INTERVENTION FOR SMOKING REALLY HELPED A LOT IN ADDRESSING SOME OF THE ISSUES. >> A LOT OF THE SOCIAL SERVICES ARE LIKE STOP SMOKING GROUPS THAT MEET TOGETHER. THEY JUST HAVE NOT BEEN VERY SUCCESSFUL. >> CURRENT SOCIAL SERVICES ARE NOT -- LIKE HELP YOU FIND HOUSING -- >> THE CRRs DO THAT. THEY, YES, THEY ARE ALLOWED TO REFER THEM TO ANYTHING THEY WANT. OUR GOAL IS THAT WE WANT TO SEE AS MANY PEOPLE BE SUCCESSFUL AS POSSIBLE. AND WHAT HAS BEEN INTERESTING AND AGAIN THAT 12% IS LOW. I WANT TO SAY IT'S 18% DID RESTARTS AT VISIT 5. AND WHAT IT DID IS BACKLOGGED THEM SO WE OFFICIALLY CLOSED OFF ALL THE PHONES AS OF JANUARY. AND WHAT IT MEANS IS THAT WE ARE ABLE TO TRACK PEOPLE MAYBE ONLY TO VISIT 10. SOME ONLY TO VISIT 9 ON THERE. BUT AT LEAST WE ARE GOING TO BE LOOKING AT HOW MANY WERE STILL SMOKE FREE BY VISIT 9 BECAUSE AGAIN WE HAVE THE CARBON MONOXIDE TO CONFIRM SELF REPORTS OF USE ON IT. BUT THEY WERE PRETTY EXCITED ABOUT KNOWING THERE WERE OTHER PEOPLE THEY COULD GO TO AND TALK WITH. LIKE AGAIN ON PINE RIDGE IN PARTICULAR, THEY HAD A NURSE WHO HAS BEEN DOING OR PROVIDING A LOT OF SUPPORT SERVICES FOR SMOKERS AND THEY REALLY LIKED INCLUDING HER IN WHAT THEY WERE DOING. SAID WE JUST TO TRACK WHO SHE IS SEEING SO WE CAN SEE IF THAT IS A CONFOUNDING VARIABLE. IS SHE THE REASON FOR SUCCESS OR IS IT SOMETHING ELSE? ROADS BUD WAS MUCH MORE DIFFICULT THAN WAS PINE RIDGE. >> [ OFF MIC ] >> SO, TWO QUESTIONS. ONE SMALL AND ONE LARGER. DID YOU -- LOOKING AT AGE DIFFERENCES AND THINK MAYBE THOSE THAT DIDN'T FULLY PARTICIPATE OF THE 140 OR SO LIKE MAYBE THEY WERE OF YOUNGER AGE AND THE OLDER ONES MORE INCENTIVIZED FOR HEALTH REASONS OR WHAT HAVE YOU TO CONTINUE ON? AND THE OTHER IS, HAVE YOU THOUGHT ABOUT FOR A NEXT STEP, ADDRESSING IN SHORT THE SMOKING PICTURE? SO WITH RESPECT TO TOBACCO CONTROL POLICIES AND SOCIAL NORMS CHANGES AND LIKE THE LARGER THEATERS GO ON SPORADICALLY THROUGHOUT THE COUNTRY -- EFFORTS IS THAT ANY ON THROUGHOUT THE COUNTRY. WHAT WOULD BE MOST RELEVANT IN YOUR COMMUNITIES. >> SO FOR THE POLICIES AND SO ON, ALL OF OUR CLINICAL SETTINGS ARE NON SMOKEING ON PINE BRIDGE AND ROSE BUD. YOU WILL BE FINING PEOPLE UNDER THE NON SMOKE CAN TIME. THEY ARE SUPPOSED TO BE 20 FEET AWAY FROM THE NON SMOKING CLINIC AND THEY ARE 5 BECAUSE IT'S COLD. THERE ARE POLICIES IN PLACE AND THERE ARE DIFFERENT REASONS YES SOME OF THE POLICIES HAVE NOT BEEN PROMOTED. AND BOTH PINE RIDGE AND ROSE BUD THAT ARE POLITICAL. SO, YOU'RE GOING TO HAVE A POLICY LIKE THE U.S. GOVERNMENT. YOU HAVE A POLICY IF YOU DON'T HAVE AN ADMINISTRATIVE SIDE TO REALLY ENFORCE IT. AND IT MAKES IT A LOT MORE DIFFICULT. THE AGES WE ARE LOOKING AT, THE AGE SYSTEM OF WHO REMAINED QUIT AND WHO DIDN'T, AND LOOKING AT A LOT OF THE FACTORS AND ANALYZING THOSE NOW. WE ARE COLLECTING THE CULTURAL INFORMATION. A LOT OF THEM THROUGH THE THEORY OF PLANNED BEHAVIOR BECAUSE WE HAD CULTURAL ITEMS THT ARE EMBEDDED WITHIN THE SURVEYS THAT THEY TAKE AND SURVEYS ARE ON% THE iPAD SO THE CRRs TAKE THE iPAD WITH THEM AND WHATEVER VISIT IT IS, IT HAS DIFFERENT SURVEY ITEMS AND DIFFERENT ONES THEY FOLLOW-UP ON ALSO AN EXIT WHEN THEY DECIDE THEY ARE DONE WITH THE STUDY. EVEN IF IT'S NOT -- 11 OR 18 MONTHS OF CESSATION. AND THE ISSUE THAT KEEPS COMING BACK IS THAT THERE WERE FAMILY EMERGENCIES. AND I HAD TO SMOKE. THERE WERE JUST TOO MANY FAMILY EMERGENCIES. SO IT'S THE NORM. IT'S POVERTY. FERNANDO? >> I THINK ONE OF THE THINGS IT BRINGS UP FOR ME WHEN I LOCK AT IMMIGRANT HEALTH, I WAS ON THE IOM COMMITTEE AND WE LOOKED 59 BEHAVIORS AROUND SMOKING AND IT SEEMED TO BE LESS AMONG THOSE THAT WERE FIRST GENERATION, NOT ACULTRATED. AND I'M WONDERING WHETHER THERE IS SOME SENSE OF SELF RESPECT OF CONTROLLING YOUR BEHAVIORS AROUND THE IDEA THAT YOU'RE CONNECTED TO SOMETHING THAT IS A CULTURAL THING? FOR EXAMPLE THAT YOUNG MAN TALKING ABOUT HOW TOBACCO WAS USED, THE IMPORTANCE AND NOT DISRESPECT THAT. I WONDER AS WE BEEN OUR POPULATIONS DO WE NEED TO THINK ABOUT HOW DO WE LOOK AT THEIR ISSUES OF SELF RESPECT AND CONTROL WITH THAT SELF RESPECT AND WHETHER WHAT WE FOUND ON THIS REVIEW AT THE IOM, BECOMING AMERICANIDES WAS WORSE BECAUSE WHAT YOU HAVE GOT, AMERICANIDES BY WAS ALL THE MEDIA THAT WAS TRYING TO SELL THINGS THAT WEREN'T GOOD FOR YOUR HEALTH. I'M WONDERING HOW TO VIEW THAT AND IF THAT'S A VENUE YOU'LL PURSUE? >> THOSE ARE ITEMS THAT ARE COLLECTED IN THE SURVEYS. LOOKING AT LIKE HOW STRONGLY YOU I'VE WITH YOUR CULTURE AND WHERE SMOKING FITS FOR YOU AND IT WAS AMAZING THE NUMBER OF PEOPLE WHO ALREADY ANYHOW THE APPROPRIATE PROTOCOLS. SO I'M A NON SMOKER. WHEN I DO PIPE CEREMONY I'M NEVER EXPECTED TO TAKE THE PIPE IN MY LIPS. I AM EXPECTED TO TAKE IT, DEPENDING ON WHICH TRIBE I'M WITH AT THE TIME, YOU TAP THE MOUTH PIECE ON YOUR SHOULDER AND YOUR OTHER SHOULDER AND TO THE CENTER TO PRAY TO THE CREATORROR WITHOUT INHALING THE SMOKE AND YOU PASS IT ON. THE MAJORITY OF PEOPLE KNEW THAT. THEY KNEW AN APPROPRIATE WAY TO NOT HAVE TO SMOKE OR THEY SAID NO, IT'S RED WILLOW. SO IT'S NOT TOBACCO. SO WE ARE BEING RESPECTFUL. WE DID RUN INTO A LOT OF PEOPLE THAT WOULD SAY, WE ARE USING CHA NAPA, SUPPOSED TO BE A TYPE OF ESPECIALLY-GROWN TOBACCO FOR CEREMONY. BUT WHAT WE FOUND IS THAT SOME OF THEM WERE USING AMERICAN SPIRIT. SO AMERICAN SPIRIT CAME FROM CHINA. IT IS NOT AMERICAN INDIAN. THERETO IS NOTHING SPECIAL ABOUT AMERICAN SPIRIT. IT'S A GREAT EXAMPLE OF MARKETING BY THE TOBACCO COMPANIES. BUT YOU WILL HAVE A LOT OF INDIAN PEOPLE SAY, I ONLY USE AMERICAN SPIRIT. WHAT BENEFIT DO YOU FIND IN THIS? AND THEY SAY, I FELT I'M BEING MORE TRADITIONAL. WHEN YOU FEEL THAT YOU'RE BEING MORE TRADITIONAL, WHAT DOES THAT MEAN IN TERMS OF YOUR BEHAVIOR? AND THEY SAY, I ONLY -- I BLOW THE SMOKE ONLY WHEN I'M PRAYING. SO I DON'T INHALE AS OFTEN. OKAY. SO WE ARE PLAYING WITH SOME OF THOSE TYPES OF SELF REPORTS AND QUALITATIVE FINDINGS TOO. >> COMMENT. RECOMMENDATION I HAVE FOR YOU IS, PROBABLY NOT ON YOUR MANAGED GROUP RADAR BUT LESSONS LEARNED WILL BE GREAT -- >> WE JUST RELEASED IT LAST MONTH. ALTHOUGH WE HAD TO TAKE SEVERAL OF THE MESSAGES ON THE PHONES. I THINK I HAD 3000 WORDS ON WHAT WE HAD LEARNED FROM THE PHONES ITSELF. BUT AGAIN OUR BOTTOM LINE THING AND WHAT WE ARE PLANNING TO DO IN THE NEXT STUDY IS THAT WE WERE GOING TO RESTRICT IT TO PEOPLE WHO HAVE PHONES AND WE'LL CONTRIBUTE 30 DOLLARS A MONTH TO HELP THEM PAY FOR THEIR PHONE BILL OR HOWEVER THEY WANT TO USE THE INCENTIVE IS UP TO THEM. >> ONE FINAL COMMENT. >> THANK YOU. JUST FOLLOW-UP ON THE SELF REPORT PIECE OF THIS. BECAUSE WE HAVE FAIRLY STANDARD QUESTIONS THAT WE ASK FOR 7 DAY PREVALENCE FOR INSTANCE. HAVE YOU OF SMOKED, EVEN A PUFF IN THE PAST 7 DAYS. HOW DO YOU ADJUST FOR THAT WITH TRADITIONAL SMOKING AND AMERICAN AND ALASKA NATIVE POPULATION? >> ALMOST NOBODY SMOKES TRADITIONAL EVERY DAY UNLESS YOU'RE A HEALER. IF YOU'RE A HEALER, THERE IS A WHOLE DIFFERENT SET OF PROTOCOLS THAT YOU USE AND THE PROTOCOLS DIFFER FOR PINE RIDGE AND SOMEBODY WHO IS IN RAPID CITY. SO IT ACTUALLY IS DONE DIFFERENTLY FOR IT. BUT LIKE ON THE CARBON MONOXIDE TEST, IF WE GET A LOW RATING OF ABOUT 4, WE DON'T FINISH THEY HAVE TAKEN A PUFF OR IF THEY WENT TO THE CASINO. BECAUSE IF THEY GO THROUGH THE CASINO, THEY RANGE ANYWHERE FROM A 4 TO A 7 WHEN THEY COME OUT. SO THE 7 IS A SURPRISE THAT THEY COULD GET THAT MUCH BUT AGAIN,% THEY WOULD BE HANGING OUT NEAR THE BIGGEST SMOKERS INHALING BECAUSE THEY WANTED THE PHONE. SO THAT BECAME A CONFOUNDER FOR US CERTAINLY. THANK YOU VERY MUCH. >> THANK YOU VERY MUCH, LINDA. WE WILL -- [ APPLAUSE ] TAKE A BREAK NOW TO GET OUR LUNCH. AND I SAY WE'LL BE BACK HERE AT 20 AFTER SO WE CAN GET A HEAD START ON THE CENTERS DISCUSSION. THANK YOU >> GOOD AFTERNOON, EVERYONE, AND WELCOME BACK FROM LUNCH. WE'RE GOING TO DO AN UPDATE AND A FINAL PRESENTATION ON THE REPORT ON THE CENTERS PROGRAM, AND WE FIRST PRESENTED TO YOU OR TALKED TO YOU ABOUT THIS AT THE JUNE 2016 COUNCIL, SO I'M JUST GOING TO GIVE A LITTLE BIT OF BACKGROUND AND THEN THE MEMBERS OF THE WORKING GROUP ARE GOING TO THEN TALK TO YOU ABOUT THE RECOMMENDATIONS OR THE OUTCOMES OF OUR REPORT. SO I'M GOING TO START BY JUST KIND OF REMINDING YOU HOW THIS ALL GOT STARTED. I'M GOING TO TRY THIS ONE MORE TIME. SO THE MINORITY HEALTH AND HEALTH DISPARITIES RESEARCH AND EDUCATION ACT OF 2000, WHICH ESTABLISHED THE NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES, ALSO MANDATED THAT THERE BE CENTERS FOR EXCELLENCE, AND THE CENTERS OF EXCELLENCE WERE SUPPOSED TO BE ESTABLISHED IN COLLEGES AND INSTITUTIONS TO ADDRESS HEALTH DISPARITIES ON RESEARCH, RESEARCH TRAINING AND EDUCATION, AND CAPACITY BUILDING AND COMMUNITY OUTREACH. WHEN THE NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES WAS REDESIGNATED BY THE PATIENT AFFORDABLE CARE ACT, PATIENT PROTECTION AND AFFORDABLE CARE ACT OF 2010, THOSE MANDATES DID NOT CHANGE. AND SO THE NATIONAL INSTITUTE ON MINORITY -- THE NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES HAS SEVERAL CENTERS PROGRAMS THAT ARE NOW FUNCTIONAL. THEY INCLUDE THE EXPLORATORY CENTERS OF EXCELLENCE, THE P20s, AND THE P60s, THE COMPREHENSIVE CENTERS OF EXCELLENCE, AND THEIR FOCUS, AGAIN, IS TO ADDRESS HEALTH DISPARITIES THROUGH RESEARCH, RESEARCH TRAINING, AND EDUCATION AND COMMUNITY OUTREACH. THERE ARE ALSO TRANSDISCIPLINARY COLLABORATIVE CENTERS OF HEALTH DISPARITIES, THE U54. THIS IS ONE OF THE NEWER PROGRAM PROGRAMS WHICH CONSISTS OF REGIONAL COLLABORATIONS BETWEEN ACADEMIC INSTITUTIONS, COMMUNITY ORGANIZATIONS, HEALTH SERVICES PROVIDERS AND SYSTEMS, AS WELL AS LOCAL GOVERNMENTS THAT ARE ALL WORKING ON A PRIORITY, A TARGETED PRIORITY FOR ELIMINATING HEALTH DISPARITIES. THERE IS ALSO THE CENTERS OF EXCELLENCE IN ENVIRONMENTAL HEALTH DISPARITIES. THESE ARE INTERDISCIPLINARY PROGRAMS THAT REALLY FOCUS ON THE CONNECTION BETWEEN BIOLOGY, THE ENVIRONMENT, AND SOCIAL SCIENCES TO LOOK AT THE INFLUENCE OF THESE ON THE HEALTH OF INDIVIDUALS AS WELL AS POPULATIONS. THIS IS A TRANSAGENCY COLLABORATION BECAUSE IT IS A COLLABORATION BETWEEN THE THE NIMHD, THE ENVIRONMENTAL PROTECTION AGENCY, THE NATIONAL INSTITUTE ON ENVIRONMENTAL HEALTH SCIENCES, AS WELL AS THE NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT. THEN THERE ARE THE RESEARCH CENTERS ON MINORITY INSTITUTION, THE RCMI. THIS IS A PROGRAM AS YOU HEARD EARLIER EARLY THAT WAS TRANSFERRED WHEN. THIS PROGRAM HAS A DIFFERENT LEGISLATION FROM THE LEGISLATION THAT MANDATED THAT THE NIMHD OR THE NICHD DEVELOP CENTERS OF EXCELLENCE. THESE CENTERS ARE IMPORTANT BECAUSE THEY ARE ALL PART OF THE RESEARCH INVESTMENT STRATEGY OF THE INSTITUTE IN ADDRESSING -- IN PROMOTING MINORITY HEALTH AND REDUCING HEALTH DISPARITIES. IN ADDITION TO CONDUCTING AND SUPPORTING RESEARCH ON -- IN ADDITION TO CONDUCTING AND SUPPORTING RESEARCH ON CLINICAL, HEALTH SERVICES RESEARCH, AS WELL AS TRAINING, AS WELL AS CAPACITY BUILDING, AS WELL AS OUTREACH AND DISSEMINATION OF INFORMATION. THESE ARE ALL PART OF THAT STRATEGY TO HELP -- TO ELIMINATE HEALTH DISPARITIES AND SUPPORT A BETTER POPULATION. IN APRIL OF 2016, A WORKING GROUP, THE DIRECTOR ESTABLISHED A WORKING GROUP TO REVIEW THE CENTERS PROGRAMS. NOW THERE WERE TWO CENTERS THAT ARE NOT INCLUDED IN THIS. THE FIRST ONE IS THE RCMI PROGRAM BECAUSE OF THE DIFFERENT LEGISLATION THAT THEY ARE MANDATED BY, AND THE SECOND IS THE ENVIRONMENTAL HEALTH DISPARITIES CENTERS, BECAUSE THAT IS A TRANSAGENCY ACTIVITY. SO THE DIRECTOR WANTED TO LOOK AT WHAT HAVE WE DONE SINCE 2002, WHEN THESE PROGRAMS WERE ESTABLISHED, BECAUSE THAT'S WHEN THE ACT MADE THIS MANDATE, AND WHERE ARE WE GOING? SO THE CHARGE TO THE WORKING GROUP WAS TO MAKE RECOMMENDATIONS TO THE NIMHD DIRECTOR ON RESTRUCTURING THE CENTERS PROGRAM, SPECIFICALLY JUST THE P20s, THE P60s AND THE U54s, UNDER ONE UMBRELLA WITH SPECIFIC HEALTH DISPARITIES THEMES. THESE ARE THE MEMBERS OF THE WORKING GROUP. IN ADDITION TO FOUR MEMBERS OF COUNCIL, THERE WERE TWO EXTERNAL MEMBERS AS WELL AS NIMHD STAFF THAT PARTICIPATED IN THIS PROCESS. THE WORKING GROUP FOCUSED ON THREE PRIORITY AREAS. ADVANCING THE SCIENCE OF MINORITY HEALTH AND HEALTH DISPARITIES THROUGH PUBLICATION AND DISCOVERY, LEVERAGING OTHER FUNDING IN ORDER TO ADVANCE THE AGENDA, ADVANCING THE DEVELOPMENT AND SUPPORT OF FUTURE MINORITY HEALTH AND HEALTH DISPARITIES INVESTIGATORS. UP TO THIS POINT, THIS IS PRETTY MUCH THE SAME INFORMATION THAT WE GAVE YOU IN JUNE. SINCE THAT TIME, THE WORKING GROUP BEGAN TO LOOK AT DATA ON THE CENTERS. FROM LOOKING AT THE FUNDING HISTORY TO THE DISEASE AND CONDITIONS THAT THE CENTERS STUDIED, THE TARGET POPULATIONS, AS WELL AS SOME OF THE METHODOLOGIES THAT WERE BEING USED BY THE DIFFERENT GRANTS, THAT WERE BEING USED IN THE DIFFERENT GRANTS. SO FROM 2002 TO 2015, THE NIMHD HAS SUPPORTED 114 GRANTS FOR LITTLE OVER $857 MILLION. THIS HAS BEEN NOT EVENLY DISTRIBUTED AS YOU SEE ACROSS THE P20s, P60s, AND THE U54s. THERE'S A COUPLE CAVEATS TO THIS. NOT ALL OF THE GRANTS P20s OR P60s WERE SUPPORTED FROM THIS -- DURING THIS WHOLE TIME FRAME FROM 2002 TO 2015, THERE ARE GRANTS THAT CAME IN AT DIFFERENT TIMES BECAUSE OF DIFFERENT FOAs THAT WERE PUT OUT AND ROTATED OUT. AND THE U54s, THE TCCs, ACTUALLY DID NOT BEGIN AS A PROGRAM UNTIL 2012. SO THEY CAME IN TOWARDS THE END OF THIS. AND AS YOU KNOW, THEY DO HAVE THEMATIC FOCUSES. FOR EXAMPLE, MEN'S HEALTH, SOCIAL DETERMINANTS OF HEALTH, AND HEALTH POLICY. HAVE THR HAVE BEEN OTHERS ADDED SUCH AS PRECISION HEALTH, BUT THE LATTER TWO WERE NOT INCLUDED IN THE STUDY BECAUSE WHEN WE STARTED THIS IN 2016, THEY WERE UNDER PRECISION MEDICINE AND CHRONIC DISEASES WERE UNDER REVIEW AT THAT TIME SO THEY ARE NOT PART OF THIS REVIEW. SO AGAIN, WE'VE SUPPORTED OVER THIS TIME PERIOD 114 STUDIES OR A LITTLE OVER $857 MILLION. NOW, LOOKING THROUGH THE DATA WAS CHALLENGING. IT'S CHALLENGING BECAUSE THE THREE PROGRAMS DID NOT HAVE THE SAME PROGRAMMATIC REQUIREMENTS, THEY DID NOT HAVE THE SAME TIME FRAME FOR FUNDING, THEY DID NOT HAVE STANDARD METRICS FOR HOW THEY SHOULD BE EVALUATED, SO THEY'RE VERY DIFFERENT PROGRAMS, AND THAT'S OKAY AND I'M GOING TO SAY THAT BECAUSE WHEN THEY WERE INITIATED, THAT WAS NOT THE FOCUS. SO OUR REVIEW IS NOT FORMAL EVALUATIONS OF THE PROGRAMS, BECAUSE WE DID NOT DO THAT. WE BASICALLY LOOKED TO SEE WHAT ARE SOME OF THE AREAS THAT HAVE BEEN STUDIED BY THE DIFFERENT PROGRAMS. WE LOOKED AT WHAT ARE SOME OF THE POPULATIONS AND BASICALLY WE TRIED TO LOOK AT SOME OF THE PUBLICATIONS, THAT WAS A LITTLE BIT DIFFICULT TO TEASE OUT, AND LET ME TELL YOU WHY. WE'RE LOOKING AT ERA DATA, AND WHAT'S IN OUR IMPACT 2 ELECTRONIC SYSTEM, AND AT DIFFERENT TIMES THIS SYSTEM HAS BEEN CHANGEED, BUT IT NEVER DID CAPTURE WHAT MIGHT HAVE BEEN THE FOCUS IN SUBPROJECTS. IT CAPTURED INFORMATION ABOUT THE OVERALL PROJECTS BUT NOT THE SUBPROJECTS. SO IT WAS HARD TO REALLY KIND OF SEE WHAT WAS BEING PUBLISHED BASED ON THE SCOPE OF A PARTICULAR PROJECT, OR WHETHER OR NOT GRANTS SUCH AS R01s OR R21s WERE BEING OBTAINED BASED ON THE SCOPE OF THE ORIGINAL PROJECTS OR EVEN THE SUBPROJECTS. SO THAT WAS A CHALLENGE. SO BASICALLY WE COULD DO SOME THINGS THAT WERE VERY GOOD. FIRST OFF, WE COULD LOOK AT THE DISEASE AND CONDITIONS THAT -- THE TOP DISEASE AND CONDITIONS THAT WERE BEING EXAMINED IN THESE GRANTS. AND THAT WAS KIND OF EASY TO TEASE OUT, WITH YOU BUT AGAIN, WE'RE LOOKING MORE AT THE OVERALL PROMS INSTEAD OF THE SUBPROJECTS BECAUSE WITHIN A PARTICULAR GRANT, THERE MAY BE SEVERAL DIFFERENT CONDITIONS THAT WERE BEING EXAMINED. WE DO KNOW THERE WERE ABOUT 25 TOP DISEASE AND CONDITIONS, SO FOR THE P20s, IT WAS VERY CLEAR THAT DIABETES WAS ONE OF THE TOP CONDITIONS THAT WAS EXAMINED. FOR THE P60s, CANCER WAS -- ACTUALLY CANCER WAS KIND OF DISPERSED BETWEEN THE TWO, WE WERE ABLE TO SAY CANCER WAS ANOTHER TOP DISEASE EVALUATED. CARDIOVASCULAR DISEASE, OBESITY, HIV, MENTAL HEALTH, AND THEN IF YOU NOTICE THAT TOWARDS THE BOTTOM, MOST OF -- A LOT OF THE U54s HAD CHRONIC DISEASES. SO THAT WAS LIKE A CATCH ALL CATEGORY. SO WE CAN TALK ABOUT SOME OF THE TOP CONDITION, BUT WE CAN'T TELL YOU THAT 20% OF THE U50s DID THIS OR P60s DID THIS OR 20% OF THE P20s DID THAT. WE DO KNOW THAT THESE ARE SOME OF THE CONDITIONS THAT YOU WOULD SEE IN THE GRANTS IF YOU JUST WENT AND REVIEWED THEM. NOW, WITH A FORMALIZED EVALUATION, YOU MAY BE ABLE TO ASCERTAIN THAT KIND OF INFORMATION, BUT AGAIN, YOU HAVE TO KEEP IN MIND THAT THESE PROGRAMS, WHEN THEY WERE ESTABLISHED, DID NOT HAVE THE SAME PROGRAMMATIC REQUIREMENTS OR EVEN EXPECTATIONS OF WHAT THEY WOULD REPORT OUT AS MILESTONES OR OUTCOMES. WE ALSO LOOKED AT TARGET POPULATIONS, AND IT LOOKS LIKE THAT THERE WAS A PRETTY GOOD DIVERSITY ACROSS ALL OF THE CENTERS WHILE IT MAY SEEM LIKE -- SO THERE WAS PRETTY GOOD DIVERSITY IN THE SENSE THAT THEY FOCUSED ON AFRICAN-AMERICANS, HISPANICS, NATIVE AMERICANS, NATIVE HAWAIIANS, ASIAN AMERICANS, AMERICAN INDIANS AND ALASKAN NATIVES, RURAL INDIVIDUALS THAT LIVE IN RURAL COMMUNITIES. WHAT WAS INTERESTING IS THAT THERE WAS A LARGE PERCENTAGE OF THE GRANTS THAT WE DID LOOK AT THAT DID NOT DEFINE WHAT THE ACTUAL POPULATION WAS. THEY BASICALLY SAID THAT THEY WERE GOING TO DO WHATEVER STUDY THEY WERE GOING TO DO IN MINORITY HEALTH OR HEALTH DISPARITIES POPULATIONS, OR THAT THEY WERE GOING TO DO IT IN MINORITIES OR THAT THEY WERE GOING TO DO IT IN THE UNDERSERVED. THEY DID NOT IDENTIFY WHO MADE UP THAT POPULATION OF INDIVIDUALS, WHAT RACIAL OR ETHNIC MINORITY GROUP WAS INCLUDED IN THAT TERMINOLOGY. IN ADDITION TO THAT, WE WERE ALSO ABLE TO LOOK AT SOME OF THE TOP RESEARCH METHODOLOGIES THAT WERE USED, AND IT WAS CLEAR THAT QUITE A FEW OF THE GRANTS DID INTERVENTIONAL STUDIES, EPIDEMIOLOGICAL STUDIES, CLINICAL STUDIES, BASIC AND BEHAVIOR RESEARCH, THEY EXPAND THE GAMUT. AND IN ADDITION TO THAT, THERE MAY BE MORE THAN ONE TYPE OF METHODOLOGY THAT WAS USED IN A PARTICULAR GRANT. SO THAT'S ANOTHER PIECE OF INFORMATION TO KEEP IN MIND. SO THERE WERE NOT THE SAME PROGRAM REQUIREMENTS, THERE WERE DIFFERENT MECHANISMS BEING USED, THERE WERE NO STANDARD METRICS THAT WERE A SIGN FOR AN EVALUATION OF WHAT EACH TYPE OF CENTER WAS DOING. THAT HAS GOTTEN BETTER BUT THAT WAS THE CASE OF WHAT WE WERE LOOKING AT FROM 2002 TO 2015. AT THIS POINT, I'M GOING TO TURN THE MIC OVER TO A MEMBER OF MY TEAM. >> SO AS WORKING GROUP MEMBER, WE WERE TRYING TO DIGEST ALL THIS INFORMATION AND PROVIDE VEED FEEDBACK, GUIDANCE AND RECOMMENDATIONS TO THE INSTITUTE. THIS IS KIND OF OUR ASSESSMENT OR SUMMARY. SO THIS FIRST SLIDE TALKS ABOUT PRIORITY AREAS AND FRAMEWORK FOR MOVING FORWARD. SO IN AN EFFORT TO ADVANCE THE SCIENCE ON MINORITY HEALTH AND HEALTH DISPARITIES THROUGH SCIENTIFIC DISCOVERY AND INNOVATION AND PUBLICATIONS, AND I THINK WE WANTED TO ALSO BRING IN THE FRAMEWORK THAT THE INSTITUTE HAS BEEN WORKING ON AND I'LL SHOW YOU THAT IN A MINUTE. WE ALSO PRIORITIZED FUNDING OPPORTUNITIES, LOOKING AT THE MECHANISMS WHICH HAD HISTORICALLY BEEN USED TO FUND AND PURSUE THE MISSION OF THE INSTITUTE, WE WANTED TO LOOK AT THAT AS A PRIORITY AREA. AND OF COURSE THE OTHER AREA IS TO CULTIVATE OUR NEW GENERATIONS OF INVESTIGATORS AND ESTABLISH -- MID CAREER INVESTIGATORS SO WE WANTED TO LOOK AT THE SUPPORT FOR THEM IN TERMS OF PILOT FUNDING, K AWARDS AND SUPPLEMENTS TO FURTHER FUTURE MINORITY HEALTH AND HEALTH DISPARITY INVESTIGATORS. SO THIS IS THE FRAMEWORK I WAS REFERRING TO. THIS HAS BEEN -- I'M SURE MOST OF YOU ARE FAMILIAR WITH, BUT THIS IS THE CONCEPTUAL FRAMEWORK I THINK THAT THE INSTITUTE WOULD LIKE TO MOVE FORWARD WITH IN THE FUTURE. IT DEALS WITH, ON THE LEFT-HAND SIDE, DOMAINS OF INFLUENCE, LEVELS OF INFLUENCE, AND WE WANTED TO LOOK AT THE FUNDING MECHANISMS AND IN THE CONTEXT OF THIS FRAMEWORK SO THAT WE CAN PROMOTE RESEARCH THAT WOULD ADDRESS THIS IN A MORE HIGHER LEVEL OR TAKE OUR RESEARCH TO THE NEXT LEVEL BY DOING INFLUENCE AND LOOKING ACROSS THE LEVELS OF INFLUENCE FROM THE INTERPERSONAL TO THE SOCIETAL LEVEL. SO WE HAD THIS IN OUR DISCUSSIONS AS WELL WHEN IT COMES TO OUR RECOMMENDATIONS. SO THE PRIORITY AREAS, AGAIN, AND WE'RE GOING TO GO OVER THESE IN DETAIL, ARE ADVANCING THE SCIENCE OF MINORITY HEALTH AND HEALTH DISPARITIES THROUGH SCIENCE, INNOVATION AND DISSEMINATION, LEVERAGING FUNDING IS VERY IMPORTANT, WE RECOGNIZE FROM OUR DISCUSSION TODAY THAT FUNDING LEVELS IN THE INSTITUTE ARE PROBABLY NOT ADEQUATE TO ADDRESS ALL HEALTH DISPARITIES WE NEED TO COLLABORATE WITH THE OTHER INSTITUTES AND FUNDING MECHANISMS OUTSIDE OF THE NIH AND ALWAYS KEEPING IN MIND WHAT ARE THE BEST MECHANISMS FOR DEVELOPING OUR FUTURE GENERATIONS OF DISPARITIES INVESTIGATORS. I THINK I'M GOING TO TURN IT OVER NOW TO LAURA. >> WE HAD A WONDERFUL GROUP OF PEOPLE TO WORK WITH. SO THE RECOMMENDATIONS, THE OVERARCHING RECOMMENDATIONS OF THE WORKING GROUP WAS THAT THE NIMHD ESTABLISH CENTERS THAT FOCUS ON HEALTH DISPARITY POPULATIONS INCLUDING THE INTERSECTION OF DOMAINS OF INFLUENCE AND LEVELS OF INFLUENCE ON HEALTH DISPARITIES RESEARCH AS ILLUSTRATED IN THAT FRAMEWORK. SO THE WORKING GROUP RECOMMENDS THE USE OF THE P20/P60 AND THAT THE NIMHD USE THE U54- COOPERATIVE AGREEMENT MECHANISMS FORT CENTERS FOR THE CENTERS PROGRAMS.& THERE'S A LOT OF DISCUSSION ON THAT, WE WANT YOU TO HOLD YOUR QUESTIONS UNTIL AT THE END, BUT THIS COOPERATIVE AGREEMENT MODEL, WE THOUGHT, WOULD PROMOTE INNOVATION AND LEVERAGE CURRENT UNDERSTANDING OF THE COMPLEXITIES OF MINORITY HEALTH AND HEALTH DISPARITIES. THIS WOULD ALLOW INVOLVEMENT AND LEVERAGING OF THE EXPERTISE OF THE PROGRAM STAFF IN RESEARCH DISCUSSIONS AND ACTIVITIES AND ALLOW CONNECTIONS BETWEEN RESEARCHERS WITH RESOURCES AT NIH AND ALL OTHER SOURCES OF ALL OF THE NIH AGENCIES, AND THEN LOOK AT WAYS THAT WE COULD FIND FUNDING FOR NEWLY FUNDED CENTERS, TO ALLOW PROGRAM STAFF TO GUIDE THE CENTERS RESEARCH FOCUS BY IDENTIFYING WHAT WE THOUGHT WERE EMERGING AREAS OF RESEARCH THAT WOULD FIT INTO THE SCOPE OF THE PARENT GRANT AND WHAT COULD BE IDENTIFIED FOR MORE ATTENTION, THEN THE OTHER IDEAS WE THOUGHT OF WOULD CREATE STRONGER ALIGNMENT AND CONNECTIONS TO THE SCIENCE THAT'S BEING CONDUCTED IN THE ENTIRE COMMUNITY AND THE REGION THAT THE CENTERS WOULD BE LOCATED IN. SO THERE WERE THREE MAJOR PRIORITIES YOU SAW EARLIER. PRIORITY ONE IS ADVANCING THE SCIENCE OF MINORITY HEALTH AND HEALTH DISPARITY POPULATIONS THROUGH PUBLICATION AND DISCOVERY. WE THOUGHT THE CENTERS SHOULD BE ENCOURAGED TO WORK CLOSELY WITH VARIOUS COMMUNITY PARTNERS TO FACILITATE THE DEVELOPMENT OF PROGRAMS THAT COULD BE IMPLEMENTED IN REAL WORLD SETTINGS TO IMPROVE MINORITY HEALTH AND REDUCE HEALTH DISPARITIES. AND THEN TO ENCOURAGE CONCEPTUALIZATION OF INNOVATIVE IDEAS FOR CENTERS TO INTEGRATE HEALTH DISPARITIES RESEARCH ACROSS TRANSDISCIPLINARY BOUNDARIES SO THAT WE WOULD BE ABLE TO BRING IN THE KNOWLEDGE OF MULTIPLE DISCIPLINES TO SUPPORT THE WORK OF CENTERS, AND WE FELT THAT IF STAFF WAS INVOLVED, THAT MIGHT ENCOURAGE THAT MORE. ADDITIONALLY IN THIS PRIORITY AREA, TO ENCOURAGE APPROPRIATE LINKED PARTNERSHIPS AMONG RESEARCH INTENSIVE AND EMERGING AND UNDERRESOURCE RESEARCH INSTITUTIONS TO GROW OPPORTUNITIES FOR RESEARCH CAPACITY TO INCREASE THE TOTAL NUMBER OF PEOPLE WHO MIGHT HAVE SKILLS IN THE FUTURE. THAT CRITERIA FOR PROGRAM EVALUATION SHOULD BE INCLUDED WITH PUBLICATIONS AND FOLLOW-UP GRANTS, AND THAT SHOULD BE INCLUDED IN THE FOA, AND THEN WE REALLY SAW THE IMPORTANCE OF SITE VISITS BEING PERFORMED BY PROGRAM STAFF SO THAT WOULD BE AN INTEGRAL PART OF THE PROGRAM TO PROVIDE NOT ONLY OVERSIGHT BUT THEN TO ALSO ENCOURAGE RETURN ON THE INVESTMENT OF THE RESOURCES THAT WERE BEING PROVIDED TO THESE CENTERS OF EXCELLENCE. THEN THE SECOND PRIORITY -- >> SO THANKS, EVERYONE. AGAIN, GETTING BACK TO THE FRAMEWORK ON WHICH THIS IS BASED, IT REALLY ALSO IS ABOUT LEVERAGING OTHER FUNDING FOR THOSE INVESTIGATORS SO THAT THEY CAN ADVANCE THE AGENDA FOR HEALTH DISPARITIES. I THINK WE HEARD SOME OF THAT THIS MORNING IN THE MORNING AS YOU RECALL, AND THERE'S AN OPPORTUNITY TO DO THIS WITH ALL THE GRANTS WE END UP FUNDING THROUGH THIS INSTITUTE AS WELL. SO ONE OF THE ADDITIONAL THINGS FOR THE CENTERS THAT FOCUS ON HEALTH DISPARITY POPULATIONS, INCLUDING THE INTERSECTION OF DOMINIONS OF INFLUENCE AND LEVELS OF INFLUENCE, THAT MEANT ENCOURAGING SUSTAINABLE AND REALLY APPROPRIATELY LINKED STRONG PARTNERSHIPS TO BE ABLE TO DO THIS. I THINK AGAIN, WE HEARD ABOUT ONE THIS MORNING FROM PCORI, BUT IF YOU THINK ABOUT IT, THERE ARE MANY OTHERS THAT POTENTIALLY CAN DO THIS AS WELL. WE'RE TALKING ABOUT COMMUNITY-BASED ORGANIZATIONS. IF WE GO BACK TO THAT FRAMEWORK AGAIN AND THINK ABOUT HOW COMMUNITY MEMBERS CAN BE HELPFUL, HOW THEY CAN APPLY FOR THINGS, HOW CITIES MAY BE ABLE TO HELP OTHER GROUPS TO SORT OF CREATE SOMETHING CALLED A FORCE MULTIPLIER EFFECT, IF LU, FOUNDATIONS THAT MAY WANT TO FUND HEALTH DISPARITIES RESEARCH RESEARCH. ALL OF OUR SOCIETIES, I KNOW THE AMERICAN SOCIETY OF NEPHROLOGY, FOR EXAMPLE, IS VERY INTERESTED THIS AND THEY WORK WITH NIDDK, BUT THERE ARE MANY OTHERS WHO MAY BE IN A SIMILAR VAIN OF THINKING ABOUT THIS AS WELL. THEN AS WE THINK ABOUT OTHER FEDERAL AND STATE OR LOCAL AGENCYIES WHO HAVE TO DEAL WITH VERY SIMILAR PROBLEMS AND ISSUES, IT'S IMPORTANT, AND THEN INDUSTRY SHOULD NOT BE DISCOUNTED EITHER. AND I THINK DR. PEREZ TALKED ABOUT WHAT'S GOING ON INTERAND ALSO INTRA. THE SECOND BULLET IS ENCOURAGE INNOVATIVE APPROACHES FOR CONNECTING A RANGE OF SOURCES AS WELL AS LEVERAGING EXISTING SOURCES, AND ONE OF THE THINGS WE CAME UP WITH, THE CMS CENTER FOR INNOVATION DOES A LOT OF RESEARCH IN THIS. THEY DO PRACTICAL REAL WORLD THINGS TO HELP CHANGE WHAT MIGHT BE SOME DISPARITIES IN HEALTHCARE, HOW IT'S FUNDED AND THAT KIND OF THING. AGAIN, AS WE HEARD ABOUT THE CENTER PCORI THIS MORNING. WE ALSO THOUGHT ANOTHER OPPORTUNITY WOULD BE TO LOOK AT OTHER INTERESTS IN HEALTH DISPARITIES, GROUPS LIKE THE DEPARTMENT OF LABOR, DEPARTMENT OF TRANSPORTATION, HOW DO PEOPLE GET AROUND, HOW ARE THEY EDUCATED. AS YOU THINK ABOUT THE LIFE COURSE, BIOLOGY, BEHAVIORAL, SYSTEMS IN THE FRAMEWORK, WE THINK ABOUT JUSTICE AND EDUCATION AND WE HAD DISCUSSIONS EARLIER THIS MORNING ABOUT THE POTENTIAL EFFECT OF WHAT HAPPENS WHEN IMMIGRATION POLICIES MIGHT GO AWRY. THESE ARE OTHER EXAMPLES OF WHERE WE MIGHT BE INFORMED AND/OR HELP INFORM OTHERS TO GET APPROPRIATE FUNDING. THE FINAL RECOMMENDATIONS WAS TO MAKE CERTAIN THAT WE GREE ATE THE CREATE THE NEXT GENERATION OF CAPABLE, OUTSTANDING INVESTIGATORS TO PUSH THE MISSION OF THE NIMHD ALONG. SO WHAT WE WANTED TO BE ABLE TO DO, WHEN WE SAY TRACK THE PRODUCTIVITY, NOT JUST TRACK IT TO SORT OF SAY, BOY, WE'VE SEEN WHAT YOU'VE DONE, BUT WE WANT TO KNOW WHO PEOPLE ARE SO THAT WHEN THEY HAVE DONE GREAT THINGS, YOU KNOW, WE CAN SAY, BOY, I THINK YOU HAVE GREAT PROMISE, THERE'S OPPORTUNITY FOR TO YOU STAY IN THIS AREA, BUILD YOUR CAREER, AND IF WE KNOW THAT FROM WHAT THEY'VE DONE ON THEIR APPLICATIONS, ALSO WHAT THEY'VE PUBLISHED, FOR EXAMPLE, THAT CAN BE HELPFUL. ESTABLISH NETWORKS AMONG FUNDED INVESTIGATORS TO MEET REGULARLY. THIS IS SOMETHING THAT THE INSTITUTE CAN PROBABLY DO, AND FOR EXAMPLE, THE TWO THINGS THAT YOU'RE BRINGING TOGETHER SOON ON STRUCTURAL RACISM AND THE OTHER MEETINGS THAT YOU'RE PLANNING, EARLY MAY OR LATE MARCH, WILL ALSO BE IMPORTANT TO SORT OF DO THAT. IF WE CAN HAVE FUNDED INVESTIGATORS TO SHOW UP FOR THOSE, THAT WILL BE HELPFUL AS WELL. ONE OF THE THINGS THAT WE ALSO SHOULD BE PASSIONATE ABOUT IS AMONG YOUNG INVESTIGATORS, A VERY SUCCESSFUL PROGRAM OVER AT NIDDK, SIMILARLY, AT NCI WITH AACR, IS A FORUM FOR JUNIOR INVESTIGATORS AND TO INVITE PEOPLE INTO THE AREA OF RESEARCH. THIS IS VERY IMPORTANT, DR. RODGERS HAS BEEN VERY SUPPORTIVE OF SOMETHING CALLED NAMRI, THE NETWORK OF MINORITY RESEARCH INVESTIGATORS. IT BRINGS OPPORTUNITIES FOR PEOPLE FROM THE POSTDOC LEVEL THROUGH JUNIOR FACULTY LEVEL TO GET TOGETHER WITH SENIOR MENTORS AND OTHERS WHO HAVE BEEN SUCCESSFUL IN A FORUM WHERE THEY CAN PRESENT THEIR RESEARCH, SHOW WHAT THEY'RE DOING IN THIS AREA IN KIDNEY DISEASE, BUT WE CAN DO THE SAME THING FOR MINORITY HEALTH AND HEALTH DISPARITIES, NOT UNLIKE YOUR SUMMER INSTITUTE. BUT THAT CAN HELP AS WELL. THAT GROUP HAS BEEN TOGETHER 15 YEARS. MOST OF THE PEOPLE IN THE GROUP ARE VERY LOYAL TOWARDS -- OVER 90% OF THEM AS WELL. THEN DEVELOP PROGRAMMATIC EVALUATION CRITERIA THAT INCLUDES AN ASSESSMENT OF WHO THE PRIMARY INVESTIGATORS AND COINVESTIGATORS HAVE TRAINED, AND USING THAT AS A DATABASE, AND ONE OF THE WAYS TO ASSESS THAT COULD BE INCLUDED IN THE FUTURE ANNOUNCEMENTS AS WELL. SO THE FINAL RECOMMENDATIONS FOR THE INSTITUTE WERE ENCOURAGE THE CREATION OF A RESOURCE REPOSITORY FOR HEALTH DISPARITY RESEARCH THAT'S BEEN CONDUCTED BY NIMHD AND OTHER AGENCIES. I DON'T KNOW HOW THIS WOULD BE FUNDED BUT I THINK WE CAN THINK ABOUT IT. THE OTHER APPROACH, THERE'S A LOT OF DATA IN THE CMS DATABASE THAT PEOPLE USE TO DO RESEARCH, AND THE PCORI DATABASE WE SAW THIS MORNING, THEY'VE TOUCHED 145 MILLION PEOPLE. SAMHSA IS ANOTHER EXAMPLE, AHRQ AND OTHERS. THEN FINALLY TO REALLY MAKE SURE IF THERE'S ADEQUATE STAFF TO MANAGE ALL THAT WE HAVE RECOMMENDED AMONGST THE U54s. AND AGAIN, AS WE GO BACK TO THE FRAMEWORK TO PUT ALL THIS TOGETHER, WE'RE TRYING TO MAKE SURE THAT ANY PLACE WE CAN HAVE INTERSECTIONS HERE WITH THE DOMAINS AND LEVELS OF INFLUENCE, WITH YOU CAN GET PROBABLY MUCH BETTER OPPORTUNITIES TO GROW THE REALM OF HEALTH DISPARITIES RELATED RESEARCH. NOW I THINK WE'LL STOP THERE AND TAKE ANY QUESTIONS AND HAVE A FURTHER DISCUSSION THAT PEOPLE MIGHT WANT TO HAVE ABOUT THIS CHANGE. THANK YOU VERY MUCH. >> GREAT PRESENTATION. I THINK YOU GUYS DID AN OUTSTANDING JOB JUST REALLY SYNTHESIZING THIS INFORMATION, MAKING SENSE OF IT. NUMBER ONE, THE CENTERS OF EXCELLENCE PROGRAM WAS INITIATED IN EARLY 2000, AND IT'S BEEN -- IT HAS HAD A GREAT IMPACT ON MY CAREER AND I KNOW COUNTLESS OTHERS. SO MY QUESTION IS, IN TERMS OF THE TYPE OF RESEARCH THAT WOULD BE CONDUCTED AT THE CENTERS OF EXCELLENCE, DO YOU SEE A SHIFTING MORE SO TO JUST POPULATION BASED STUDIES OR WILL YOU ALSO FOCUS ON THE BASIC CLINICAL -- ANYTHING LISTED PRE THIS LIST? YOU PASSED IT. SO DO YOU FORESEE THAT SLIDE CHANGING TO FOCUS MORE AND ON THE EPIDEMIOLOGICAL, BEHAVIORAL, MAYBE INTERVENTIONAL RESEARCH AS OPPOSED TO THE BASIC CLINICAL? >> I THINK GIVEN THE FRAMEWORK, THERE'S AN OPPORTUNITY TO INTEGRATE MULTIPLE METHODOLOGIES, NUMBER ONE, TO BRING IN MULTIPLE DISCIPLINES IN A CENTER GRANT TA THAT YOU CAN THEN LEVERAGE. YOU CAN STILL HAVE A FOCUS ON CANCER, BUT PERHAPS YOU NEED A BASIC SCIENTIST TO ANSWER SOME QUESTION AS THOSE TOOLS BECOME AVAILABLE IN A HEALTH DISPARITIES-RELATED APPROACH TO THE PROBLEM YOU'RE TRYING TO ADDRESS. I DON'T SEE IT POTENTIALLY CHANGING THAT ASPECT OF IT, IN FACT, IT MIGHT ENHANCE IT SOME UNDER THIS NEW RUBRIC OR MECHANISM POTENTIALLY. >> BECAUSE HISTORICALLY, THERE'S BEEN A LOT OF DUPLICITY AMONG THE ICs BECAUSE OF THAT NOTION. THE CENTERS OF EXCELLENCE WERE ACTUALLY DOING SOME OF THE WORK THAT OTHER INVESTIGATORS WERE PLANNING TO DO VIA OTHER ICs. REALIZING THAT WE HAVE A UNIQUE FOCUS ON POPULATION BASED STUDIES, COULD THAT BE OUR NICHE AS RELATES TO, I GUESS, PROCEEDING FORWARD? >> SO I'M GOING TO TAKE A DIFFERENT APPROACH IN THIS IN THAT WE DID NOT DIRECT THE -- FIRST OF ALL, THE WORKING GROUP WAS BASICALLY EXPLORING OR REVIEWING WHAT HAS BEEN DONE IN THE PAST. WHAT HAVE BEEN THE TOP RESEARCH AREAS. THE RECOMMENDATIONS THAT ARE BEING MADE ARE TO THE DIRECTOR ABOUT HOW TO RESTRUCTURE THIS PROGRAM. IN A WAY THAT WE ARE PROPOSING THAT ALSO TAKES INTO ACCOUNT THE FRAMEWORK. WE'RE NOT GIVING A DIRECTIVE TO HIM AS TO WHAT SHOULD BE HIS NEXT STEP. WE'RE GIVING HIM SOME SUGGESTIONS TO CONSIDER. WE DID NOT INFORM OR WRITE AN FO FOA. WE JUST LOOKED AT THE INFORMATION HISTORICALLY AND THEN MAKE RECOMMENDATIONS. AND ONE OF THE THINGS THAT IF YOU NOTICE IN SOME OF THE RECOMMENDATIONS THAT WERE BEING MADE WERE THE CHALLENGES THAT WE HAD TO GRAPPLE WITH IN LOOKING AT THE DATA. FIRST OF ALL, WE'RE LOOKING AT THREE DIFFERENT MECHANISMS, OKAY? SECONDLY, THE REQUIREMENTS FOR THESE PROGRAMS WERE DIFFERENT. SO WHAT WE WERE TRYING TO DO, WHAT THE WORKING GROUP IS TRYING TO DO, IS MAKE SUGGESTIONS AS TO HOW TO BETTER JUDGE THE SUCCESS OF THE PROGRAM GOING FORWARD. SUGGESTING ALSO THAT THERE BE VALUATION CRITERIA THAT WOULD BE A STANDARD PART OF ANY FOA THAT'S GOING OUT, BUT IN TERMS OF ACTUALLY SAYING WHAT THE FOCUS IS GOING TO BE IN THE COMING -- THAT'S REALLY THE PURVIEW OF THE DIRECTOR. WE WERE REALLY FOCUSING ON SOME OF THE CHALLENGES. FOR EXAMPLE, WE COULDN'T EVEN TEASE OUT HOW MANY PUBLICATIONS WERE BEING DONE BY EACH -- I DON'T WANT TO DO ALL THE TALKING. LYN, PLEASE. >> I GUESS AS WE WERE LOOKING AT ALL OF THE MATERIALS, IT JUST PROVIDES A FRAMEWORK, I BELIEVE, FOR STAFF AND THIS AGENCY TO BEGIN TO THINK ABOUT HOW DO YOU WORK MORE CLOSELY WITH CENTERS IN THE FUTURE TO SHAPE THE FUTURE DIRECTION FOR THE SCIENCE THAT FOLLOWS THAT FRAMEWORK. SO WHAT PEOPLE DO IN THE FUTURE, WE DON'T KNOW WHAT WILL HAPPEN MOVING FORWARD, BUT THE IDEA OF BEING ABLE TO LEVERAGE, TO HAVE STAFF WORKING IN PARTNERSHIP, LOOKING AT HOW DO WE MAXIMIZE THE USE OF RESOURCES, LOOKING AT HOW DO YOU SUSTAIN A CENTER AS A MOVES FORWARD OVER TIME. THOSE WERE THE THOUGHTS THAT WE HAD IN OUR HEAD AS WE WERE MOVING, GOING THROUGH ALL OF THESE MATERIALS. >> AND AGAIN, I WANT TO COMMEND THE GROUP ON ALL OF THE EFFORTS IN THAT REGARD. I THINK YOU GUYS, WE'RE AT A UNIQUE PLACE TO EVOLVE THESE CENTERS OF EXCELLENCE. THEY' MERGED AT A TIME WHEN THERE WAS NO INFRASTRUCTURE FOR HEALTH DISPARITIES -- [INAUDIBLE] INITIATION OF THE P20s AND P60s -- AND GOT A LOT OF US PROMOTED AND WE REALLY BENEFITED AND ARE ABLE TO REALLY ESTABLISH THE INFRASTRUCTURE AS ATTEMPTS TO BETTER UNDERSTANDING MINORITY HEALTH AND HEALTH DISPARITIES, BUT RIGHT NOW I THINK WE'RE AT A CROSSROADS WHERE WE CAN REALLY EVOLVE THIS MECHANISM TO REALLY ADVANCE THE SCIENCE AS RELATES TO HEALTH DISPARITIES. I THINK WE'RE AT THAT PLACE NOW WHERE WE CAN TALK SCIENTIFICALLY ABOUT THIS AS A DISCIPLINE, AND YOU KNOW, I'M IN STRONG AGREEMENT WITH MANY OF THE RECOMMENDATIONS THAT YOU GUYS PUT FORTH, IN PARTICULAR, THE MULTI-SECTORAL APPROACHES, I THINK THAT'S GOING TO BE A STANDOUT IN THE NEAR FUTURE BECUSE WE WON'T BE ABLE TO FUND THIS AGENDA ON OUR OWN, NIH WON'T BE ABLE TO FUND IT ON THEIR OWN, OTHER AGENCIES, SUCH TALKING ABOUT THE EVOLUTION OF HOW WE ADVANCE THE SCIENCE, THE FOCUS WILL STILL HAVE THE GENOMIC LEVEL OF ANALYSES AND TRYING TO BETTER UNDERSTAND DISPARITIES, BUT REALLY TAKING IT TO THE POPULATION LEVEL, I THINK THAT'S THE STRENGTH OF THIS INSTITUTE, SOMETHING THAT WE SHOULD PRETTY MUCH HERALD GOING FORWARD, BUT CONGRATULATIONS ON A GREAT EFFORT. I KNOW IT'S CHAOTIC WITH TRYING TO EVALUATE OUR CENTER WHEN I WAS IN TEXAS, AGAIN WHEN WE WERE IN FLORIDA, THERE WAS NO STANDARDIZATION AMONG THE CENTER, NO SORT OF CROSSTALK EITHER. >> DR. AIR ARANETA. >> I APPRECIATE YOUR EMPHASIS AND RETURN TO THE FRAMEWORK BECAUSE IT IS SOMETHING THAT WE HAVE ALL COLLECTIVELY INVESTED IN, NOT JUST THE COUNCILMEMBERS AND THE STAFF, BUT ALL THE COMMUNITY PARTNERS WHO PARTICIPATED IN THE WORKSHOPS LAST SPRING. HOW ARE WE GOING TO HOLD THE U54 INSTITUTES ACCOUNTABLE TO IMPLEMENTING THIS FRAMEWORK? YOU HAVE A GRID THERE OF 20 SQUARES, ARE WE GOING TO REQUIRE THEM TO HAVE AT LEAST HAVE TWO LEVELS OF INS FLEUNS AND X LEVELS OF DOMAINS OF INFLUENCE? I THINK WE SHOULD. >> I THINK YOU'RE RIGHT, I THINK REFERENCING THE FRAMEWORK WHICH WILL BE PUBLISHED BY THEN AND WIDELY DISTRIBUTED AND REMPSED ON FOA, WE HAVEN'T SEEN IT OR KNOW WHEN IT'S GOING TO BE WRITTEN, BUT I THINK THAT PLUS HAVEING PROJECT STAFF INVOLVED THROUGH THIS U54 MECHANISM WILL ACHIEVE THAT GOAL A LOT BETTER THAN IF -- IT'S JUST A GRANT AND THE TEAM IS ALLOWED TO GO FORWARD, SO THOSE ARE -- THAT WAS OUR THINKING AT THAT TIME. >> I THINK PEOPLE WILL STILL BE ABLE TO BE ENTREPRENEURIAL IN THEIR THINKING AND THE OPPORTUNITIES THEY'RE TRYING TO GROW AND BUILD. WE'RE NOT TRYING TO TAKE ANY OF THAT AWAY IN THIS SITUATION. DR. THOMAS DOWN AT THE END? >> THANK YOU VERY MUCH. IN THE SCHOOL OF PUBLIC HEALTH AT THE UNIVERSITY OF MARYLAND, COLLEGE PARK. IT IS A PIVOTAL MOMENT, I'VE BEEN PART OF THIS SINCE ITS ORIGIN, SO I JUST WANTED TO SAY SOMETHING THAT MAYBE YOU DON'T KNOW CLOSE TO THE GROUND. INSTITUTIONS, UNIVERSITIES ARE CHANGING RESULT OF THIS AGENCY'S WORK. AT MY OWN INSTITUTION, THE UNIVERSITY OF MARY LAND COLLEGE PARK AND BEFORE THAT UNIVERSITY OF PITTSBURGH, PROMOTION AND TENURE GUIDELINES HAVE BEEN CHANGED TO ENCOURAGE AND SUPPORT COMMUNITY ENGAGED RESEARCH. THAT'S BRAND NEW. IT IS DIRECTLY RELATED TO WHAT THIS AGENCY HAS DONE. BECAUSE I'M A PROFESSOR AND SENIOR PERSON, I GET A LOT OF EXTERNAL REQUESTS TO WRITE LETTERS OF PROMOTION FOR FACULTY AROUND THE COUNTRY, THIS PERSON IS COMING UP FOR PROMOTION AND TENURE AS A HEALTH DISPARITIES SCHOLAR. AS A HEALTH EQUITY SCHOLAR. THAT'S NEW. SO WHILE WE'RE TINKERING AND AT A CRITICAL MOMENT, IT'S KIND OF LIKE A LAG TIME. AND WHAT YOU MAY NOT REALIZE IS THAT IN THE WAKE OF THIS AGENCY'S EVOLUTION, INSTITUTIONS ARE CHANGING AND ALIGNING THEMSELVES TO WHERE YOU HAVE BEEN. SO HOPEFULLY WHEREVER WE'RE GOING, WE WON'T ABANDON THEM. AND A KEY PART OF THAT IS SAYING THAT COMMUNITY ENGAGED RESEARCH, SCHOLARSHIP, SCIENTIFIC CONTRIBUTION, NEW JOURNALS HAVE BEEN CREATED AS A RESULT OF THIS AGENCY. SO I'M VERY, VERY ENCOURAGED FOR WHAT THE FUTURE MIGHT BRING AND HUMBLE ENOUGH TO KNOW THAT AS WE TINKER, WE DON'T WANT TO BREAK SOMETHING THAT'S ACTUALLY TRANSFORMATIVE. THANK YOU. >> THANK YOU, DR. THOMAS. I WOULD JUST WANT TO ECHO YOUR SENTIMENTS THERE AND WE DISCUSSED THAT A LITTLE BIT THIS MORNING ABOUT HOW IMPORTANT HEALTH DISPARITIES RESEARCH HAS COME, HOW IT'S CHANGED UNIVERSITIES, HOW THIS GROUP OF PEOPLE AT NIMHD HAVE HELPED TO DO THAT, AND WANT YOU TO KNOW THAT CRITICALLY IMPORTANT IN THOSE RECOMMENDATIONS WAS TO ENSURE THAT THE NUMBER OF FUTURE INVESTIGATORS IN HEALTH DISPARITIES RESEARCH IS EXPANDED AND ONE HOPES EXPONENTIALLY GIVEN THE CHALLENGES AND THE PROBLEMS WE HAVE, AND I AGREE WITH YOU, IT'S BEEN TRANSFORMATIVE FOR MANY UNIVERSITIES, NOT JUST THE TRADITIONAL PLACINGS THAT PLACES THAT HAVE DONE RESEARCH BUT MANY OF OUR RESEARCH-INTENSIVE UNIVERSITIES AS WELL. >> DR. ADAMS, YOU POINTED TO A SLIDE CHARACTERIZING ACCOUNTABILITY AND RETURN ON INVESTMENT. CAN YOU TALK A LITTLE MORE ABOUT THAT? I THINK THAT'S SPOT-ON, AND I'D LIKE YOU TO -- HOW IS THAT REALLY GOING TO HAPPEN? >> SURE. WELL, THIS WAS PART OF THE DISCUSSION IN OUR WORKING GROUP TO BEGIN TO THINK ABOUT HOW WE CAN BEGIN TO LOOK AT IF WE MOVED IN THIS DIRECTION OF THE U54, YOU WOULD HAVE STAFF'S KNOWLEDGE AND WISDOM AND INSIGHT INTO HOW THEY COULD WORK WITH THE CENTERS TO TRY TO LOOK AT HOW THEY COULD HELP THE LEVERAGE FUNDING, AND IMPROVE THE INVESTMENT THAT THEY WERE MAKING AND SEE HOW LONG TERM WE WOULD BE ABLE TO ALSO SUSTAIN SOME OF THESE CENTERS THROUGH MULTIPLE FUNDING STREAMS AS OPPOSED TO JUST THE FUNDING THAT WOULD COME FROM THIS AGENT SILL BY ITSELF SO I THINK THE KEY THING IS THAT THEY WOULD BE ABLE TO CONNECT WITH OTHER ICs AND BE ABLE TO IDENTIFY WHERE THE KNOWLEDGE THEY HAVE OF WHAT IS GOING ON IN ONE CENTER OF SENSE AND HAVE THE KNOWLEDGE TO SUGGEST TO THAT PI OR THAT GROUP OF PEOPLE WHERE THEY MIGHT GO FOR OTHER FUNDING, BUT THE COOPERATIVE AGREEMENT IS AN INTERESTING MODEL. I KNOW A LOT OF PEOPLE MAY NOT -- MAY THINK THAT THIS IS AN UNUSUAL METHODOLOGY BUT WHAT WE THOUGHT WITH THE ENGAGEMENT OF STAFF, IT MIGHT HELP PEOPLE DO A BETTER JOB. AND I JUST WANTED TO ECHO WHAT MY COLLEAGUE FROM UNIVERSITY OF MARYLAND WHERE I SPENT A LARGE PORTION OF MY CAREER, I THINK IT'S NOT THAT THE -- SOME COLLEGES, SOME SCHOOLS ARE NOW INCORPORATING HEALTH DISPARITIE AS PART OF MISSION. THEIR MISSION. AND THEY'RE REALLY ENCOURAGING MORE THIS WAY. I AGREE, THE WORK THAT YOU ALL ARE DOING HERE HAS REALLY INFLUENCED NOT ONLY JUST PEOPLE WHO ARE INTERESTED IN HEALTH DISPARITIES RESEARCH BUT IT'S ALSO INFLUENCING THE WAY PEOPLE THINK ABOUT SOCIAL DETERMINANTS OF HEALTH AND HOW DO WE IMPROVE THE HEALTH OF ALL OF THE PEOPLE THEY'RE TAKING CARE OF. >> ONE OF THE THINGS WE TRIED TO DO TO HELP, BECAUSE IT WAS SUCH A CHALLENGE TO LOOK AT SOME OF THE DATA, WANTED TO MAKE RECOMMENDATIONS THAT IN MOVING FORWARD, PUT IN PLACE EVALUATION CRITERIA FROM THE START IN THE FOA, SO THAT WHOEVER GETS THIS GRANT WILL KNOW WHAT THE SPECIFIC REQUIREMENTS ARE. WHAT ARE THE EXPECTATION WE WANT YOU TO PUBLISH, WE WANT YOU TO GET OTHER FUNDING, WE WANT YOU TO SUPPORT AND TRAIN YOUNG INVESTIGATORS. WELL, YOU NEED TO BE -- EVERYBODY NEEDS TO KNOW HOW TO DO THAT. IT'S NOT JUST -- WE HAD P20s, P60s AND U54s. SO YOU'RE LOOKING AT APPLES AND ORANGES IN SOME WAYS, AND IN SOME CASES, THOSE WERE NOT THE REQUIREMENTS THAT WERE SPELLED OUT. IF EVERYBODY IS STARTING ON THE SAME PAGE, IF YOU TELL PEOPLE UP FRONT WHAT THE EXPECTATIONS ARE, HOW WE'RE GOING TO MEASURE THIS, WHAT ARE WE GOING TO BE LOOKING FOR, AND THEN YOU HAVE PROGRAM STAFF THAT IS INVOLVED. NOW WHEN YOU HAVE A COOPERATIVE AGREEMENT, YOU ACTUALLY HAVE A STAFF MEMBER WHO ACTS AS A PROJECT SCIENTIST, WHO WORKS WITH PRESIDENT TRUMP P.I.s, AND THOSE ARE THE SLIDES ABOUT LEVERAGING THE EXPERTISE OF THE PROGRAM STAFF. YOU SHOULD ALSO HAVE ANOTHER PROGRAM PERSON WHO IS NOT AS INTIMATELY INVOLVED WITH THE PROJECT AS THE PROJECT SCIENTIST SCIENTIST. THEY HAVE TWO DISTINCT ROLES. ONE STILL CARRIES OUT THE FIDUCIARY DUTIES AND RESPONSIBILITIES THAT EVERY PROGRAM OFFICER HAS ADMINISTRATIVELY, SO CONDUCTING SITE VISITS, DOING THINGS OF THAT NATURE TO SEE WHAT'S GULF COAST ON ACTUALLY AT THE SITE, WHAT KIND OF PROGRAMS ARE THEY PROMOTING, WHAT KIND OF SEMINARS ARE THEY DOING, THOSE THINGS LIKE THAT, THE PROGRAM OFFICER CAN DO. WHEREAS THE PROJECT SCIENTIST IS VERY INTIMATELY INVOLVED. NOW OF COURSE YOU KNOW WE ALL KNOW WHAT'S GOING ON IN EVERY PROGRAM BECAUSE OUR STAFF IS VERY COMMITTED AND VERY DEDICATED TO THAT, BUT THERE HAS TO BE THE SEPARATION OF RESPONSIBILITIES BECAUSE AT SOME POINT, SOMEONE HAS TO IS A SAY SAY NO, THAT WILL BE THE RESPONSIBILITY OF THE PROJECT OFFICER, BECAUSE I GUARANTEE YOU, THAT PROJECT SCIENTIST IS GOING TO GET SO INVOLVED THAT THEY'RE GOING TO FORGET SOMETIMES THAT THEY WORK FOR THE FEDERAL GOVERNMENT. SO YOU HAVE TO HAVE THOSE SEPARATIONS. >> NOW THE WORKING GROUP, YOU KNOW, WE TOTALLY AGREE WITH WHAT WAS JUST SAID. WANT TO MAKE SURE THAT YOU'RE GETTING EVALUATED BUT YOU'RE ALSO GETTING OPPORTUNITIES FROM THE VERY, VERY DEEP KNOWLEDGE OF PROGRAM STAFF WHO CAN HELP YOU LEVERAGE THE MONEYS THAT YOU DO HAVE OR YOU GET FROM THE U54 COOPERATIVE AGREEMENT TO BISTLED BUILD ADDITIONAL OPPORTUNITIES. THAT SIMILAR KNOWLEDGE THAT YOU PROVIDE TO THE PROGRAM OFFICER OR TO THE PROGRAM PROJECT SCIENTIST CAN BE BROUGHT BACK HERE TO INFORM WHAT I BELIEVE PROGRAM STAFF, DR. PEREZ-STABLE AND OTHERS CAN DO TO SHOW WHAT'S GOING ON AT THE NIH AND THROUGH OTHER GOVERNMENTAL AGENCIES, AND I THINK IT JUST BRINGS MORE OPPORTUNITY TO LEVERAGE THESE GRANTS BECAUSE THERE'S NOT ENOUGH MONEY IN THAT $280 MILLION TO FUND ALL THE THINGS THAT WE NEED TO DO. >> WE NEED TO WRAP THIS UP, SO SO -- >> JUST QUICKLY -- I TOTALLY AGREE WITH THE ISSUE OF RAISING THE NEXT GENERATION. AND WORKING WITH COMMUNITIES. MY QUESTION IS, RIGHT NOW, ARE THOSE CENTERS LOCALIZED ACROSS THE COUNTRY OR ARE THEY NOT? AND I WOULD ENCOURAGE ACROSS THE COUNTRY LOCATION BECAUSE THE DIVERSITY OF THE POPULATIONS ARE QUITE DIFFERENT. I THINK WHILE THIS INSTITUTE CAN BE THE HUB, THE SPOKES ARE THE CENTERS, I THINK IT'S IMPORTANT TO CONNECT THE SPOKES, BECAUSE AT THE END OF THE DAY, IN MY EXPERIENCE, LINKING INVESTIGATORS WITH OTHER INVESTIGATORS IS REALLY KEY, PARTICULARLY FOR YOUNG INVESTIGATORS. WHEN I STARTED TO DO DISPARITY RESEARCH IN 1981, THAT 1981, THERE WAS VER Y FEW PEOPLE LOOKING AT LATINO, AND IT LOOK A LONG TIME TO FIND THOSE OTHERS. AND I THINK IF WE'RE GOING TO MAXIMIZE THE SPEED AT WHICH THIS HAPPENS, THAT'S GOING TO HAPPEN IF THERE'S CONNECTIONS. IT'S MUCH THE SAME THING AS ONCOLOGY HAS DONE, HAS DEVELOPED THESE MASSIVE PROTOCOLS, MASSIVE AMOUNTS OF DOLLARS, BECAUSE THEY CAN PUT TOGETHER VERY QUICKLY TEAMS OF VERY DISTINGUISHED INVESTIGATORS. SO I JUST WONDER WHAT YOU THOUGHT ABOUT THAT. >> I DON'T THINK WE EMPHASIZE ENOUGH THE PIPELINE POTENTIAL OF THE U54 MECHANISM. ONCE THE CENTERS ARE FUNDED, THE ABILITY TO GET EARLY AND YOUNG INVESTIGATORS CONNECTED ACROSS THE CENTERS IS VERY DYNAMIC. I'M PART OF ONE WITH THE AMERICAN HEART ASSOCIATION NOW AND THE JUNIOR INVESTIGATORS ARE JUST GOING CRAZY, WRITING ANCILLARY STUDIES ON TOP OF THE PARENT STUDIES, AND I ENVISION THAT WOULD HAPPEN IN THIS KIND OF MECHANISM TOO, AND THAT REALLY GETS THE PIPELINE NOT JUST GOING BUT THRIVING. IN MY OPINION. >> SO ALTHOUGH IN A NUTSHELL -- >> THE WORKING GROUP DID NOT, AS I THINK ONE OF MY PARTNERS HERE SAID, WE DIDN'T SEE -- WE HAVEN'T SEEN THE FOA, BUT HISTORICALLY WHEN THE INSTITUTE HAS TRIED TO FUND PROGRAMS, THEY'VE TRIED -- IN ADDITION TO GEOGRAPHICALLY DISTRIBUTING THE FUNDING BUT ALSO FOCUS ON DIFFERENT POPULATIONS WHEN IT COMES TO THE RESEARCH FOCUS. SO I THINK THAT WILL PROBABLY CONTINUE, BUT AGAIN, WE -- THAT'S GOING TO BE SOME OF THE DIRECTION THAT WOULD BE IN THE FOA WHEN IT IS PUBLISHED. >> ONE LAST QUESTION. WHAT ARE THE NEXT STEPS? YOU HAD THIS WORKING GROUP, ALL THESE GOOD SUGGESTIONS. WHAT HAPPENS, WHAT'S THE NARRATIVE LOOK LIKE, WHO DETERMINE WHAT IS? >> THAT WILL FOLLOW A LITTLE BIT LATER IN THE AGENDA. BRIEFLY, LINDA? >> VERY BRIEFLY. SO WHAT I HEAR YOU SAYING IS THAT RATHER THAN HAVING THE COMPLEXITY OF THREE DIFFERENT MECHANISMS, WE'RE DROPPING IT TO ONE MECHANISM OF THE PART OF THE ISSUE WITH THE P20 AND THE P60 IN THE PAST IS THAT WHEN WE'RE UNABLE TO CAPTURE ALL THE DIFFERENT GRANTS THAT WERE COMING IN, SO NIMHD WAS UNDER UNDERCOUNTING, THEY WEREN'T ABLE TO COUNT ALL THE GRANTS, BUT USING THE U IF FOUR AGREEMENT, YOU'LL BE ABLE TO COUNT THE PILOT GRANTS, STILL CAPTURE THOSE AND IT WILL BE SIMPLER FOR STAFF. IS THAT KIND OF IT IN A NUTSHELL? >> NOT CAPTURE THE GRANTS BUT YOU'RE RIGHT ABOUT THE PROJECT, BECAUSE A LOT OF THE GRANTS HAD MULTIPLE PROJECTS AND SUBPROJECTS IN THEM AND IN THE EARLIER STUDY, THEY HAD A LOT OF PILOT PROJECTS. SO IT'S KIND OF LIKE NORMALIZING THINGS A LITTLE BIT OR TRYING TO FIND A WAY TO NORMALIZE THINGS SO YOU CAN BETTER TRACK WHAT'S GOING ON, WHO'S DOING WHAT. >> ONE LAST FINAL THING, PLEASE, I JUST WANT TO RECOGNIZE MEMBERS OF WORKING GROUP AND AS YOU POINTED OUT THIS MORNING, DR. PEREZ-STABLE, DR. BRADFORD WAS DEEPLY INVOLVED IN THIS UP UNTIL SHE COULDN'T BE ANY ANYMORE, AND WE WANT TO AGAIN EXTEND OUR CONDOLENCES TO HER FAMILY AND RECOGNIZE HER EFFORTS IN HELPING US TO BUILD THIS THING. THANK YOU SO MUCH. [APPLAUSE] >> OKAY. SO HANG IN THERE. WE HAVE TWO MORE THINGS. OUR NEXT PRESENTER IS MEREDITH TEMPLE-O'CONNOR. I THINK I SAW HER. GREAT. MEREDITH AGREED TO COME AND TALK ABOUT HER PRIOR POSITION. AS YOU CAN SEE, SHE'S TITLED AS FORMERLY SENIOR SCIENTIFIC AID ADVISER TO THE NIH DEPUTY DIRECTOR FOR INTRAMURAL RESEARCH. SINCE I GOT HERE UNTIL VERY RECENTLY, MEREDITH HAS BEEN THE GO-TO PERSON ON INCLUSION OF MINORITIES AND OTHER POPULATIONS IN RESEARCH. THE INTERSECTIONS HAVE BEEN A VARIETY OF WAYS OF REPORTS, BRIEFINGS, TALKING ABOUT HOW WE'RE DOING, LISTENING TO HER PRESENT AT THE INSTITUTE DIRECTORS MEETING AND I ASKED HER TO COME AND GIVE US A VERSION OF THAT PRESENTATION THAT I HEARD, AND I THINK UNTIL SOMEONE TAKES OVER YOUR ROLE AT OER AND SPENDS A LOT OF TIME LEARNING, YOU'LL STILL BE THE MOST KNOWLEDGEABLE PERSON ON THIS TOPIC AT NIH FOR A TIME TO COME. AND SO WE'RE PLEASE TODAY HAVE YOU HERE AND HAVE OPPORTUNITY TO TALK TO YOU ABOUT THE ISSUES. >> THANK YOU. IS THIS WORKING? OKAY. I'M USED TO USING THE TABLE MICS. TYPICALLY DON'T HAVE A PROBLEM PROJECTING MY VOICE EITHER, BUT THANK YOU, DR. PEREZ-STABLE FOR INVITING ME TO COME TALK TO YOUR COUNCIL. I DON'T THINK I'VE PRESENTED HERE BEFORE SO I'M HAPPY TO BE ABLE TO STILL CARRY THE WATER EVEN THOUGH AS OF LAST WEEK, I BECAME A MEMBER OF THE EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE ON CHILD HEALTH AND HUMAN DEVELOPMENT, SO I'M GETTING USED TO THE LONGER NAME INSTEAD OF OER, WHICH WAS A LITTLE EASIER TO SAY. BUT HAPPY TO BE HERE TO CHAT ABOUT INCLUSION AS DR. PEREZ-STABLE SAID, I'VE BEEN LIVING IN THIS SPACE QUITE FRANKLY ALMOST SINCE DAY ONE FOR ME AT I.M.F. WHICH WAS ABOUT 16 1/2, 17 YEARS AGO. I'VE BEEN WORKING IN DIFFERENT WAYS AT NIH MOSTLY AT INSTITUTES AND CENTERS BUT MOST RECENTLY IN OER FOR THE PAST SIX YEARS. PRIMARILY DEDICATED TO THINKING ABOUT INCLUSION ALTHOUGH AS A SENIOR ADVISER, I HAD SOME OTHER PIECES IN MY PORTFOLIO AS WELL.& SO TODAY WANTED TO TALK WITH B. A ABOUT A FEW THINGS THEN OPEN IT UP FOR DISCUSSION. REVIEW THE INCLUSION POLICIES AND SHOW YOU A SNAPSHOT OF SOME OF THE PIECES THAT ARE PART OF OUR CONGRESSIONAL REPORTING PROCESS, AND THEN ALSO SHARE SOME THINKING WHICH IS ONE OF THE THINGS THAT CAME UP AT THE IC DIRECTOR'S BRIEFING AROUND HOW WE'RE THINKING ABOUT INCLUSION AND WHERE THINGS ARE HEADED FROM THE NIH PERSPECTIVE. SO ONE OF THE THINGS I DO LIKE TO DO EVERY TIME I PRESENT REGARDLESS OF THE GROUP IS SORT OF GIVE THE FRAMEWORK OF WHAT THE UNIVERSE OF INCLUSION IS, BECAUSE THERE IS AND CAN BE CONFUSION OUT IN THE COMMUNITY AS WELL AS EVEN WITHIN NIH ABOUT WHAT IS SUBJECT TO INCLUSION POLICY AND WHAT THAT MEANS FOR HOW TO INTERPRET THE WAYS WE'RE THINKING ABOUT INCLUSION AND WHAT DATA AROUND ENROLLMENT THAT I'LL BE PRESENTING. SO PRETTY MUCH THE BOTTOM LINE TO GET TO THE PUNCH LINE IS THAT ALMOST ANYTHING THAT WE CONSIDER HUMAN SUBJECTS RESEARCH PER THE COMMON RULE IS GOING TO BE SUBJECT TO INCLUSION POLICY. THERE ARE A FEW EXCEPTIONS IN THAT SPACE BUT THEY'RE FEW AND FAR BETWEEN, AND THE BIGGEST OF WHICH IS IF RESEARCH IS CONSIDERED FOR EXEMPTION 4 OF THE COMMON RULE, IT'S NOT SUBJECT TO THE INCLUSION POLICY. BUT EVERYTHING ELSE, WHETHER IT'S THROUGH THE INTRAMURAL PROGRAM, EXTRAMURAL, REGARDLESS OF THE SOURCE OF FUNDING, GRANT, COOPERATIVE AGREEMENT, CONTRACT, ALL OF THAT FALLS INTO OUR BROAD UNIVERSE OF INCLUSION POLICY. SO A LOT OF TIMES WE WILL THINK AND TALK ABOUT WHAT IT MEANS TO INCLUDE AND PEOPLE WILL HAVE DIFFERENT PERCEPTIONS OF THAT.& I'VE TRIED A LOT OVER THE PAST NUMBER OF YEARS TO BOIL IT DOWN TO AN ELEVATOR SPEECH, I'M A BIG FAN OF ELEVATOR SPEECHES AND BREVITY, AND MY QUESTION TO PEOPLE WHEN THEY'RE THINKING IN THIS SPACE IS DOES THE STUDY INCLUDE THE RIGHT PARTICIPANTS FOR THE SCIENCE. SO WE WANT THE SCIENCE REALLY DRIVING THE BUS, THE SCIENTIFIC QUESTION OR QUESTIONS THAT ARE GOING TO BE PART OF A GIVEN APPLICATION OR AWARD DRIVING THE BUS ABOUT WHAT THE RIGHT PARTICIPANTS ARE TO HAVE IN THAT STUDY. I REALLY DON'T THINK I NEED TO GO INTO MY TYPICAL SPIEL ABOUT WHY INCLUSION IS IMPORTANT WITH THIS GROUP. OBVIOUSLY WE WANT BACK TO THAT ELEVATOR SPEECH, WE WANT OUR SCIENCE TO BE REPRESENTATIVE OF WHO THE RESULTS ARE GOING TO BE APPLIED TO. THAT'S KIND OF AT THE 100,000-FOOT LEVEL. THERE HAVE OBVIOUSLY BEEN A LOT OF ARTICLES IN THIS SPACE OVER THE PAST NUMBER OF YEARS, WE'VE BEEN THINKING ABOUT INCLUSION OF COURSE AT NIH FOR MANY, MANY YEARS, BUT OF COURSE THEN WHEN FDA HAD TO RELABEL AMBIEN FOR WOMEN, THAT PUT THE LIGHTER FLUID ON INCLUSION ISSUES AND KIND OF BROUGHT IT BACK TO THE FOREFRONT, WHICH OBVIOUSLY FROM MY PERSPECTIVE, WAS A VERY GOOD THING. SO WE ALSO AT NIH THINK ABOUT INCLUSION ACROSS THE PROJECT LIFE CYCLE. IT REALLY -- THE THING THAT HAS STRUCK ME IS I'VE WORKED IN THIS SPACE IN A NUMBER OF DIFFERENT POSITIONS AT NIH, HOW IT REALLY DOES THREAD THROUGH ALMOST THE ENTIRE LIFE CYCLE OF AN APPLICATION AND AWARD AT NIH. STARTING WITH THE IDEA THAT THE SCIENCE IS GETTING GENERATED BY THE INVESTIGATOR, THEY NEED TO THINK ABOUT INCLUSION UP FRONT AS THEY'RE DESIGNING THEIR STUDIES, AND TALK ABOUT IT IN THEIR APPLICATION. I FEEL LIKE I'M PREACHING TO THE CHOIR, I'M SURE YOU ALL KNOW THIS BUT I DO LIKE TO WALK THROUGH OUR LIFE CYCLE. WE ARE EXPECTING INCLUSION PLANS IN THE APPLICATION. THERE ARE REVIEW CRITERIA THAT ARE SPECIFIC TO INCLUSION AND THEY ARE EXPECTED TO PROVIDE US THE PLAN IN THOSE SCENARIOS.& ONCE THEY GET THE MONEY AFTER THAT'S BEEN REVIEWED, IF EVERYTHING IS OKAY, IF IT'S NOT, THERE'S A BAR TO FUNDING THAT'S GOING TO HAVE TO BE FIXED BEFORE THE APPLICATION AND RESEARCH CAN GO FORWARD. ONCE THEY GET THE MONEY, THERE ARE ALSO EX-PICK TAITIONS AND EXPECTATIONS AND MONITORING THAT HAPPEN AFTER THE AWARD. GOES THROUGH IRB AS WELL, CERTAINLY IF IT'S AN FDA REGULATED STUDY, THE FDA IS GOING TO GET INVOLVED AND THAT'S ANOTHER PIECE I'M GOING TO TOUCH ON ALITTLE BIT LATER, IS I BELIEVE YOU HAD A PRESENTATION A FEW ROUNDS AGO, SHE'S BEEN A GREAT PARTNER OVER THE PAST NUMBER OF YEARS BECAUSE FDA IS ALSO THINKING ABOUT THESE ISSUES VERY MUCH AT THE MOMENT. REGISTERING IF IT'S A TRIAL IN CLINICALTRIALS.GOV AND REPORTING, REPORTING TO US ABOUT PROGRESS AND ENROLLMENT. SO THERE'S LOTS THAT NEEDS TO HAPPEN NOT ONLY AFTER THE AWARD GETS UP, BUT AS THE AWARD IS GOING ON, THEN CERTAINLY AS THE AWARD MAY BE DONE BUT THE ANALYSIS MAY CONTINUE TO GO REPORTING THOSE RESULTS IN CLINICALTRIALS.GOV, PUBLICATIONS AND OTHER SPACES TO GET THE INFORMATION OUT BECAUSE WHAT WE ALL WANT IS INFORMING BETTER HEALTH FOR EVERYONE. I DO ALSO LIKE TO TOUCH ON WHAT INCLUSION POLICY IS AND ISN'T. HIS IS NOT AN EXHAUSTIVE LIST, BUT I THINK IT IS A HELPFUL, AGAIN, FRAMEWORK FOR PEOPLE TO BE THINKING ABOUT WHAT IT IS. AS I'VE JUST TALKED ABOUT WITH THE LIFE CYCLE SLIDE, IT IS CONSIDERED TO BE AS PART OF THE RESEARCH APPROACH. IT SHOULD BE INTEGRAL TO THE SIGN TISK TISK SCIENTIFIC QUESTIONS AT HAND AND TO THINK ABOUT AS THEY'RE DESIGNING THEIR STUDIES. ASSESSMENT AT PEER REVIEW, ONGOING MONITORING BY STAFF, AND THEN A PIECE THAT A LOT OF PEOPLE DON'T REALIZE IN FILLING OUT ALL OF THE TABLES AND MANAGING THAT PROCESS BOTH INTERNALLY AND EXTERNALLY IS WE DO REPORT THIS TO CONGRESS. IT WAS EVERY OTHER YEAR, AND NOW WITH THE 21ST CENTURY CURES ACT, IT WILL BE TRI-ENYELL BUT THAT REPORTING WILL STILL HAPPEN. WHAT INCLUSION ISN'T IS A REQUIREMENT TO HAVE STUDIES INCLUDE ALL GROUPS. AND SO AGAIN, THIS TIES US BACK TO BEING ABOUT THE SCIENTIFIC QUESTION AT HAND AND OF COURSE THERE CAN BE REASONS WHY WE WOULD LIMIT INCLUSION, THERE CAN BE SOME OBVIOUS ONES, PROSTATE CANCER, WE'RE NOT GOING TO BE EXPECTING WOMEN, BUT THERE CAN BE OTHER REAPS TOO, REASONS TOO, LIKE GAP IN THE SCIENTIFIC KNOWLEDGE IN A PARTICULAR RACIAL AND ETHNIC GROUP, WANTING TO PROVE THAT AS AN INVESTIGATOR, WHAT THE RISKS ARE, THOSE CAN ALL BE THINGS THAT HELP FRAME WHAT OUR EXPECTATIONS ARE FOR WHAT INCLUSION SHOULD LOOK LIKE, BACK TO AGAIN THAT ELEVATOR SPEECH OF WHO ARE THE RIGHT PARTICIPANTS TO HAVE IN THIS STUDY. IT'S ALSO NOT A REQUIREMENT THAT ALL STUDIES, ALL STUDIES HAVE TO BE POWERED TO EXAMINE SUBGROUP DIFFERENCES. THERE IS A PIECE OF THE POLICY THAT FOCUSES ON THIS. IT'S REALLY INTENDED TO BE FOR LATER STAGE TRIALS AND INDIVIDUALS WHO ARE DESIGNING THOSE TYPES OF TRIALS SHOULD BE THINKING ABOUT THIS IN ADVANCE, WHERE THE LITERATURE IS IN THIS SPACE, AND WHEN IT'S GOING TO MAKE SENSE TO HAVE A POWERED EXAMINATION OF SUBGROUP DIFFERENCES, A NON-POWERED BUT STILL LOOKING AT IT, AT SUBGROUP DIFFERENCES, AND WHEN IT'S NOT NECESSARY. BUT THOSE ARE THINGS THAT THEY SHOULD BE WALKING THROUGH AND THINKING ABOUT IN TERMS OF THEIR APPLICATION, AND SHOULD BE HAPPENING ALONG THE WAY THROUGH THE PROGRESS OVERSIGHT AFTER AN AWARD IS ISSUED. SO ONE OF THE REASONS THAT I WAS BROUGHT TO OER IS TO OVERSEE A RE-ENGINEERING PROJECT IN THE INCLUSION BUSINESS PROCESSES. AS I MENTIONED, INCLUSION HAS BEEN AROUND FOR MANY, MANY YEARS. WEWE HAD THE LAW PASSED IN 1993 AROUND THE INCLUSION OF WOMEN AND MINORITIES, WE HAD A POLICY OF THE INCLUSION OF CHILDREN COME IN THE LATE '90S, AND IT WAS TIME TO KIND OF TAKE A LOOK, SEE HOW THINGS WERE WORKING, GET FEEDBACK AND THINK ABOUT WAYS WE COULD RE-ENGINEER OUR BUSINESS PROCESSES TO CONTINUE MEETING THE GOALS AND INTENT OF THE LAW AND THE POLICIES THAT NIH HAD ESTABLISHED AFTER THAT. A BIG FOCUS OF THAT EFFORT BECAUSE I WAS IN OER WAS REALLY ON THE BUSINESS PROCESS SIDE, WE DID ESTABLISH A NEW BUSINESS GOVERNANCE GROUP, BUT WE WERE REALLY FOCUSED A LOT ON THE BUSINESS PROCESSES PIECES, DESIGNING A NEW DATA SYSTEM AND FUNCTIONALITY BOTH FOR STAFF AND INVESTIGATORS, REALLY KIND OF GETTING THE CONVERSATION BACK TO AN EMPHASIS ON SCIENTIFIC OVERSIGHT, STREAMLINING THE DATA ENTRY SO THAT PEOPLE WERE LESS FOCUSED ON THE PROCESS ITSELF AND REALLY THINKING ABOUT THE SCIENCE AND HAVING THE SYSTEMS WORK FOR US RATHER THAN US WORKING FOR OUR SYSTEMS. ANOTHER KEY PIECE WAS FACILITATING P.I. AND STAFF COMMUNICATIONS. I'M SURE MOST OF YOU ALL ARE NO STRANGER TO THIS. YOU FILL OUT THE TABLE, IT COMES IN TO WHAT SOME PEOPLE CAN VIEW AS A BLACK BOX OF NIH, AND NIH DOES SOMETHING WITH THE TABLE AND THEN THE NEXT YOU HEAR IS, YOUR NEXT TABLE IS DUE OR THERE'S A QUESTION. BUT THERE WAS SOME UNCUMMING OF UNCOUPLEIN G, NOW WE HAVE THE ABILITY TO SEE IN REALTIME THE SAME INFORMATION, WE KNOW WHO OWNS IT, WHICH STUDY IT IS, SOME THINGS THAT REALLY GUMMED UP THE WORKS FROM A PROCESS PERSPECTIVE, WE'VE TRIED TO SMOOTH OUT SO THAT THE CONVERSATION AGAIN CAN REALLY BE FOCUSED ON THE SCIENCE AND UNDERSTANDING INCLUSION IN THE CONTEXT OF THE SCIENCE RATHER THAN GO FILL IN THIS SQUARE OR THAT SQUARE AND CLICK SAVE, HAVE AGAIN THEIR SYSTEMS WORKING FOR US. ANOTHER PIECE WAS TO DESIGN TOOLS FOR STAFF TO MONITOR PROGRESS. THEY'VE HAD A SYSTEM SINCE 2001 TO BE ABLE TO LOOK IN, BUT THERE WERE TWEAKS WE COULD MAKE TO THAT TO MAKE IT EASIER AT STAFF'S FINGERTIPS TO BE LOOKING AT PLANNED ENROLLMENT AND ACTUAL ENROLLMENT AND KIND OF WHAT'S GOING ON IN A GIVEN DATA RECORD. WE ALSO MORE TIGHTLY INTEGRATED IT WITH THE AWARD WORK FLOW, THERE HAD BEEN SOME UNCOUPLING THERE, A CONSEQUENCE WAS ENHANCING THE DATA ACCURACY, OWNERSHIP AND ACCOUNTABILITY, WHO'S ON FIRST, WHO'S GOT POSSESSION OF THE DATA, THE DATA RECORD, AND WHERE ACCOUNTABILITY WOULD RESIDE DEPENDING ON WHAT PIECE OF THE ACCOUNTABILITY MATRIX YOU'RE LOOKING AT. SO WE SPENT A NUMBER OF YEARS DOING THAT, WE RELEASED THE SYSTEM, I DIDN'T GO INTO A LOT OF DETAIL IN THIS TALK WITH THAT REGARD, I'M HAPPY TO ANSWER QUESTIONS BUT THE BOTTOM LINE IS WE RELEASED A SYSTEM IN OCTOBER 2014, AND WE ARE JUST NOW STARTING TO HAVE REPORTING COMING OUT OF THAT. WE WERE DUE TO REPORT AGAIN THIS CYCLE, THIS SPRING WHEN THE 21ST CENTURY CURES ACT WAS PASSED, AND SO OUR YEAR REPORTING GOT BUMPED OUT. SO THE DATA I'M GOING TO WALK THROUGH WITH YOU IS THE MOST RECENT PUBLIC REPORT WE HAVE. IT IS A LITTLE OLDER AT THIS POINT WITH 2014 BEING THE LAST YEAR THAT WE HAD REPORTED SO NEXT YEAR WE WILL BE BACK ON THE CYCLE AND HAVE 15/16 AND '17 IN THERE. BUT TO SHARE WITH YOU SOME OF THE WAYS THAT WE LOOK AT INCLUSION AND ANALYZE THE DATA, WE ARE LOOKING AT AGGREGATE COUNTS OF ACTUAL ENROLLMENT. SO THAT'S KIND OF THE BIGGEST GROUNDER. WAYS WE LOOK AT IT, WE LOOK BY POPULATION GROUPINGS OF SEX, GENDER, MINORITY STATUS, RACE AND ETHNICITY. SO WE DO ACTUALLY LOOK AT MINORITY CALCULATION BUT ALSO BREAK OUT BY RACIAL AND ETHNIC GROUPS. JUST DIFFERENT WAYS OF SLICING THE SAME INFORMATION TO GIVE US DIFFERENT VIEWS OF WHAT THE INFORMATION IS TELLING US. WE ANALYZE IT INTO BROAD BUCKETS, ALL CLINICAL RESEARCH SO THAT WHOLE UNIVERSE OF WHAT'S SUBJECT TO INCLUSION POLICY, AND THEN WE TAKE A SUBSET OF THAT, WHICH ARE THE NIH DEFINED PHASE 3 CLINICAL TRIALS. I'M NOT PRESENTING INTRAMURAL AND EXTRAMURAL SEPARATELY TODAY. THEY ARE A PART OF THE SAME BUT WE DO ALSO BREAK OUT AND LOOK AT INTRAMURAL AND EXTRAMURAL SEPARATELY. WE ALSO BREAK OUT AND LOOK AT U.S. OR INTERNATIONAL BECAUSE, OF COURSE, RACIAL AND ETHNIC STANDARDS AND EXPECTATIONS ARE GOING TO BE VERY DIFFERENT IN AN INTERNATIONAL CONTEXT, EVEN THOUGH THEY'RE STILL SUBJECT TO THE POLICY AND ARE REQUIRED TO REPORT USING THE OMB STANDARDS. THE FULL REPORT IS AVAILABLE AT THIS LINK FOR ANYONE WHO IS INTERESTED. THERE ARE ALSO INSTITUTE AND CENTER REPORTS. SO THE INSTITUTES AND CENTERS ARE ALSO MANDATED BY THE LAW TO REPORT EVERY OTHER YEAR, SO THERE'S A BREAKOUT ON THAT LINK BY INSTITUTE AND CENTER FOR WHAT THEY'VE REPORTED AS WELL AS THE TRANS-NIH REPORT, WHICH IS THE DATA I'M GOING TO SHOW. SO THIS IS IT A SUBSET OF WHAT IS A VERY LENGTHY REPORT IN TERMS OF THE AMOUNT OF ANALYSES THAT GOES INTO IT, SO I FOCUSED IN OBVIOUSLY GIVEN THE FOCUS OF YOUR COUNCIL ON SOME OF THE RACIAL AND ETHNIC BREAKOUTS. I DID LIMIT IT TO U.S.-BASED STUDIES FOR THE REASON THAT I WAS TALKING ABOUT, OBVIOUSLY IN A FOREIGN CONTEXT, THE CONCEPTS OF RACE AND ETHNICITY ARE DIFFERENT. IF YOU'RE INTERESTED IN THAT SPACE, IT IS BROKEN OUT IN DIFFERENT TABLES AND ANALYSES WITHIN THAT FULL REPORT. THIS IS THE FIVE-YEAR TREND FROM 2010 TO 2014 LOOKS LIKE FROM MINORITY ENROLLMENT, JUST TO ORIENT YOU TO THE GRAPH, THIS IS THE PER CENT OF MINORITY ENROLLMENT ACROSS OUR MINORITY PORTFOLIO, THIS IS TRANS-NIH, THIS IS THAT WHOLE UNIVERSE OF CLINICAL RESEARCH FOR U.S. POPULATIONS. SO IT'S PRETTY STABLE AND HAS BEEN FOR A WHILE, AROUND 30%. SO AROUND 30% MINORITIES IN OUR STUDIES. THEN IF YOU SLICE AND LOOK, THIS IS, AGAIN, A FIVE-YEAR TREND ACROSS THE FISCAL YEARS ON THE BOTTOM, PERCENT ENROLLMENT ON THE Y AXIS, BROKEN OUT BY THE DIFFERENT RACIAL AND ETHNIC GROUPS THAT ARE PART OF THE OMB STANDARDS. SO I'LL JUST WALK THROUGH THIS, WE'VE PUT THEM IN ORDER, SO IT'S MORE THAN ONE RACE, BLACK OR AFRICAN-AMERICAN, NATIVE HAWAIIAN OR PACIFIC ISLANDER, THE SMALL RED LINE, ASIAN, AMERICAN INDIAN, ALASKAN NATIVE, WHITE, AND UNKNOWN OR NOT REPORTED. SO YOU CAN SEE ACROSS ONE OF THE REASONS WE STARTED DOING THESE STACKED BAR GRAPHS WAS TO SEE THE SHIFTS AND TRENDS IN GROUPS. NOW REMEMBER, THIS IS PERCENT ENROLLMENT AT AN AGGREGATE LEVEL, SO IF YOU HAVE A DRAMATIC INCREASE IN ONE SPACE, LIKE HERE WITH THE UNKNOWNS, IT'S GOING TO SQUEEZE THE RELATIVE PERCENTAGE OF THE OTHER CATEGORIES BECAUSE IT TOTALS UP TO 100%. I WILL TELL YOU THAT THE REASON WHY WE THINK THIS BUBBLE OCCURRED IN UNKNOWNS THAT FISCAL YEAR AND SOMEWHAT IN THE NEXT FISCAL YEAR WAS DUE TO A STUDY THAT HAD A FAIRLY SUBSTANTIAL NUMBER OF UNKNOWN RACE AND ETHNICITY, THEY HAD THE SEX GENDER INFORMATION, IT WAS USING AN EXISTING DATASET SAMPLE WHERE I BELIEVE IT WAS AN INSURANCE DATASET THAT HAD THE SEX AND GENDER INFORMATION BUT IT DID NOT HAVE THE RACIAL AND ETHNIC INFORMATION AND WE CONFIRMED WITH THE I.C. SO WE'RE LOOKING FOR BIG BLIPS AND SHIFTS IN THE DATA. AND THEN, OF COURSE, AT THE NIH AT THE INDIVIDUAL INSTITUTE AND CENTER LEVEL, YOU'RE GOING TO TAKE A DOWN A LITTLE BIT TO WHAT'S GOING ON INSIDE THAT PORTFOLIO OF THAT INSTITUTE OR CENTER. SO THIS IS FOR ETHNIC, THE CATEGORIES ARE HISPANIC OR LATINO, NOT HISPANIC OR LATINO LATINO -- I'M SURE YOU ALL KNOW THIS, WE DON'T MANDATE THAT PEOPLE REPORT THEIR RACE AND ETHNICITY OR THEIR SEX GENDER. THEY CAN SELECT UNKNOWN NOT REPORTED IF THEY ARE NOT COMFORTABLE GIVING THE INVESTIGATORS THEIR SEX GENDER RACE OR ETHNICITY. BECAUSE OF A STUDY WITH A UNIQUE DATASET THAT JUST MAY NOT HAVE THE INFORMATION, WE DO SEE THAT FROM TIME TO TIME. BUT IT ALSO CAN REFLECT THE FACT THAT THERE'S A CERTAIN PERCENTAGE OF INDIVIDUALS WHO MAY NOT IDENTIFY WITH THE OMB CATEGORIES OR MAY PREFER NOT TO REPORT. SO NOW WE'RE TAKING A SUBSET OF THAT CLINICAL RESEARCH UNIVERSE WHICH IS NIH DEFINED PHASE 3 TRIALS, AGAIN WE'RE ONLY IN U.S. POPULATIONS, AND THIS IS WHAT THE TREND FOR PERCENT MINORITY ENROLLMENT LOOKS LIKE IN THOSE TRIALS. A COUPLE OF THINGS TO NOTE, THIS IS A SUBTLE UPWARD TREND, WHICH IS NICE TO SEE, SO WE'RE JUST UNDER 40% IN 2014. ANOTHER THING TO NOTE IS THE POOL, BECAUSE THIS IS A SUBSET OF THAT BROADER CLINICAL RESEARCH UNIVERSE, THE POOL HERE IS SMALL NER TERMS OF THE SMALLER IN NUMBE R OF ENROLLED PARTICIPANTS THAT WE'RE LOOKING AT. SO SOMETIME WE CAN SEE A BIT MORE NOISE IN THE PROCESS AND THE DATA BECAUSE YOU'VE GOT A SMALLER POOL THAT YOU'RE WORKING WITH. AND YOU CAN SEE A LITTLE BIT OF THAT KIND OF EMERGING HERE, SO AGAIN, THIS IS OUR STACKED BAR BY RACIAL AND ETHNIC CATEGORY STARTING WITH MORE THAN ONE RACE, BLACK AND AFRICAN-AMERICAN, NATIVE HAWAIIAN AND PACIFIC ISLANDER, ASIAN, AMERICAN INDIAN AND ALASKAN NATIVE IN THE DARK RED, WHITE, AND PERCENT UNKNOWN OR NOT REPORTED. AGAIN YOU CAN STILL SEE A LITTLE BIT OF A BUBBLE, I'M NOT SURE WE KNOW WHY IT WAS OVER HERE AS WELL BECAUSE WE DON'T THINK THAT STUDY THAT WAS CAUSING IT IN THE BIGGER UNIVERSE WAS -- IT STILL COULD HAVE POTENTIALLY BEEN LABELED AS A PHASE 3 BECAUSE OF THE AWARD. SO REMEMBER SOMETIMES THIS COMES DOWN TO WHAT THE AWARD -- AND IF THERE'S MULTIPLE STUDIES GOING ON, THERE COULD BE SOME SPILLOVER EFFECT THERE. BUT ALSO ANOTHER PIECE TO NOTE IS THE INCREASE IN THE BLACK OR AFRICAN-AMERICAN, WHICH WE THINK HAS TO DO WITH A COUPLE OF CARDIOVASCULAR TRIALS THAT ARE IN PLAY DURING THIS TIME FRAME, AND SO IT WILL BE INTERESTING AS WE GET MORE YEARS COMING UP TO SEE HOW THOSE TRENDS IF THEY CONTINUE BECAUSE WE REPORT THE ENROLLMENT UNTIL THE AWARD IS CLOSED OUT. SO FOR EXAMPLE, IF THEY STOP ENROLLING IN YEAR 3 OF THE TRIAL, IF THE AWARD IS ACTIVE, THEY WILL CONTINUE TO REPORT THAT ENROLLMENT, SO SOMETIMES LU ALSO SEE SHIFTS THAT REFLECT THE CLOSEOUT OF AN AWARD. AND THE CLOSING OF A GIVEN PROTOCOL. SO I NEGLECTED TO SAY THESE ARE CUMULATIVE ENROLLMENT, AND YOU ALL ARE PROBABLY FAMILIAR WITH THIS, WHEN YOU FILL OUT THE TABLE, IF YOU'RE IN YEAR TWO OF YOUR PROGRESS REPORT AND YOU'VE ENROLLED 100 PEOPLE AND THEN IN YEAR THREE YOU'VE ENROLLED 100 MORE, YOU WOULD REPORT 200 BECAUSE IT'S A CUMULATIVE NUMBER SO THAT WE SEE HOW THE OVERALL ENROLLMENT IS GOING IN THE LIFE OF A STUDY AS IT'S MOVING THROUGH THE AWARD. THIS IS WHAT THE ETHNIC CATEGORIES OF HISPANIC LATINO, NOT HISPANIC LATINO OR UNKNOWN OR NOT REPORTED LOOK LIKE. ENCOURAGING TO SEE FEWER UNKNOWNS, I HOPE THIS TREND CONTINUES. BUT IT GIVES YOU A SENSE THAT THE INVOLVEMENT OF HISPANICS OR LATINOS IS FAIRLY STABLE ACROSS THESE FIVE YEARS. SO ANOTHER WAY WE LOOK AT THE DATA IS TO BREAK OUT RACE AND ETHNICITY BY SEX/GENDER, SORT OF GETTING AT THE INTERSECTION OF DIFFERENT DEMOGRAPHIC MEASURES. SO YOU CAN SEE WE HAVE MINORITY ENROLLMENT BY SEX/GENDER FOR THE WHOLE CLINICAL RESEARCH UNIVERSE IN THE U.S. YOU CAN SEE GENERALLY, THIS FOLLOWS OUR TYPICAL TRENDS, WE TEND TO HAVE AROUND 50 TO 60% OF WOMEN IN OUR STUDIES AND THE TREND FOR OUR MINORITY GROUPS IS SIMILAR. THIS BLIP, WE THINK HAS TO DO WITH THE CLOSE AND END OF AN AWARD, A MENTAL HEALTH TRIAL IN VETERANS, WHERE OBVIOUSLY THE VETERAN POPULATION HAS MANY MORE MEN THAN WOMEN, SO WHEN THAT FINISHED, I BELIEVE IN 2009, IT BUMPED THE WOMEN BECAUSE YOU REDUCED THE AMOUNT OF MEN. WE DON'T HAVE A REASON WHY THIS HAS NOW KIND OF LEVELED OFF. THERE'S NO SPECIFIC STUDIES WHEN WE LOOK AT TRENDS IN THE PORTFOLIO THAT CAN EXPLAIN THE LEVELING OFF, BUT WE KNOW THAT BLIP IS PROBABLY QUEUE DUE TO THE CLOSE OF THAT TRIAL. WE DON'T AGAIN KNOW WHY HERE THERE WAS A BLIP THAT'S KIND OF COMING BACK TOGETHER. IT'S PROBABLY JUST THE TYPICAL NOISE IN THE PORTFOLIO OF NIH PARTICULARLY AS I NOTED BEFORE, IN PHASE 3 CLINICAL TRIALS, WE'RE DEALING WITH A SMALLER POOL, AND WITH THE MINORITY SECTION OF PHASE 3s, WE'RE DEALING WITH AN EVEN SMALLER POOL WHEN WE THINK ABOUT BREAKING OUT BY SEX GENDER. SO I THINK A LOT OF OUR DISCUSSION, AND WE TALKED A BIT ABOUT THIS AT THE IC TREK DIRECTORS, HAVE FOCUSED ABOUT WHAT ELSE IS THERE TO THINK ABOUT? SO WE HAVE THESE ABSOLUTE NUMBERS NOT LOOKING NECESSARILY SO BAD, THERE ARE THINGS TO DO IN THAT SPACE, BUT IS THERE MORE TO THINK ABOUT? THAT'S SOMETHING I OFTEN WILL CHALLENGE PEOPLE WHEN I PRESENT IN DIFFERENT FORUMS ABOUT, IS YEAH, THERE IS MORE TO THINK ABOUT. THE ACTUAL ENROLLMENT OF PEOPLE KIND OF STOPS IN MY VIEW THE CONVERSATION PREMATURELY. AND OBVIOUSLY I THINK THERE'S AGREEMENT WHEN WE THINK ABOUT AGE, RACE, ETHNICITY, SEX/GENDER, THERE'S AGREEMENT IN THE LITERATURE THAT THERE'S MORE TO BE THINKING ABOUT AND MORE PLACES WE NEED TO BE THINKING ABOUT WHERE WE GO AND HOW WE THINK ABOUT INCLUSION, AND THAT'S WHERE WE'VE SPENT A FAIR AMOUNT OF TIME OVER THE LAST FEW YEARS TALKING ABOUT THIS IN THE GOVERNANCE GROUP, WITH THE HILL, CONGRESS IS VERY ENGAGED AND ACTIVE ON THESE ISSUE, THIS AS IS OBVIOUSLY INDICATED BY THEIR EMPHASIS IN THE 21ST CENTURY CURES ACT. SO SOME OF THE THINGS WE'VE BEEN TALKING ABOUT IS KEEPING AND THINKING ABOUT INCLUSION AT THAT INTERFACE OF SCIENCE AND POLICY, WHICH A LOT OF THIS IS, BUT MOVING BEYOND JUST THOSE ABSOLUTE NUMBERS OF ENROLLMENT. YES, THAT'S A MEASURE. BUT IT'S NOT THE ONLY MEASURE. IT SHOULDN'T BE THE ONLY THING WE'RE THINKING ABOUT AS A BENCHMARK OF HOW WELL WE AS A SCIENTIFIC COMMUNITY ARE DOING, HAVING APPROPRIATE REPRESENTATION IN OUR SCIENCE AND HAVING OUTCOMES THAT ARE APPROPRIATE AND BETTER HEALTH, AGAIN, BACK TO KIND OF MY GRAPHIC AND MY ELEVATOR SPEECH. REALLY GETTING PEOPLE TO THINK ABOUT INCLUSION IS NOT JUST A BOX CHECKING EXERCISE, A FILLING OUT OF A TABLE EXERCISE BUT THINKING ABOUT IT IS INTEGRAL TO SCIENTIFIC DESIGN AND ANALYSIS AND WHAT YOUR STUDY IS GOING TO LOOK LIKE, AND REPORTING THE FINDINGS. SO ONE PLACE THAT WE'VE OBSERVED, AND THOUGHT A LOT ABOUT, IS THE DISCONNECT WHERE THEY'RE ENROLLING, AND YOU CAN SEE PROGRESS IN HOW DIFFERENT GROUPS ARE BEING ENROLLED, BUT THE FINDINGS MAY OR MAY NOT BE BEING REPORTED FOR THOSE PARTICULAR GROUPS. THAT'S SORT OF THE FRONTIER A LOT OF US HAVE BEEN THINKING ABOUT AND TALKING ABOUT HERE AND ELSEWHERE THE COMMUNITY IS THINKING ABOUT THESE THINGS. THEANOTHER PIECE OF THIS CONVERSATION IS NOW THINKING AND BETTER UNDERSTANDING OUR OPEN NIH PORTFOLIO, AND WHERE THERE COULD BE GAPS IN OUR KNOWLEDGE, SO THAT'S ANOTHER, AGAIN, PLACE THAT WE'RE MOVING FORWARD THAT OER IS REALLY MOVING FORWARD, AND THINKING ABOUT IN TERMS OF HOW WE CAN ADD TO WHAT I PRESENTED TODAY AND THE OTHER TYPES OF WAYS WE PRESENTED THE ENROLLMENT DATA AND THOUGHT ABOUT IT TO START GETTING AT AND KIND OF POKING AT WHAT OUR PORTFOLIO LOOKS LIKE, WHERE POTENTIAL GAPS MAY BE HIDING. ALSO ANOTHER PIECE IS UNDERSTANDING THE BROADER SCIENTIFIC FRAMEWORK WE OPERATE IN. IF YOU LOOK AT CLINICAL TRIALS.GOV, IT'S BEEN A LITTLE ANALYSIS, BUT I BELIEVE THE PERCENTAGE OF NIH REGISTERED TRIALS IN THE DATABASE IS RELATIVELY LOW RELATED TO BIG PHARMA AND OTHER PIECES OF INDUSTRY. SO THIS SHOULD BE A PARTNERSHIP WHERE WE'RE ALL THINKING ABOUT THESE ISSUES. ENGAGING WITH OTHER STAKEHOLDERS LIKE THOSE GROUPS AND FDA. LIKE I SAID, JANCA BULL HAS BEEN VERY PLUGGED IN WITH US ON THE GOVERNANCE GROUP, IN THINKING THROUGH FDA AND THEIR IMPLICATIONS FOR HOW TO THINK ABOUT INCLUSION IN A REGULATORY FRAMEWORK. THIS IS A LOT OF WHAT WE'VE BEEN THINKING ABOUT AND SHARING WITH DIFFERENT GROUPS OVER THE PAST MANY MONTHS. IN TERMS OF SOME OF THE NUTS AND BOLTSY THINGS THAT ARE ON THE HORIZON, THE TRY ENYELLEN COLLUSION REPORT WILL COME IN 2018 NOW WITH THE 21ST CENTURY CURES ACT, A PIECE I'LL TOUCH ON IN JUST A MOMENT WITH THE GAO. PART OF WHAT'S IN THAT NOW FROM THE 21ST CENTURY CURES ACT AS WELL AS WHAT WE WERE ALREADY THINKING ABOUT AND TALKING ABOUT FLEW THE GOVERNANCE GROUP IS CONTINUED EXAMINATION OF DIFFERENT WAYS OF ANALYZING AND UNDERSTANDING OUR ENROLLMENT INFORMATION. WE HAVE A LOT OF INFORMATION ABOUT OUR PORTFOLIOS THROUGH RCDC AND THINKING ABOUT HOW TO UTILIZE SOME OF THAT INFORMATION WITH ENROLLMENT INFORMATION TO PROVIDE SOME INSIGHTS INTO OUR PORTFOLIO. I AM MINDFUL TO SAY THAT'S TAKING TWO SETS OF AGGREGATE DATA THAT WE'RE GOING TO NOW BE CROSSING SO THERE CAN BE LIMITATIONS AND WILL BE LIMITATIONS, BUT IT'S A SPACE THAT I THINK OER AND DR. LAWYER, WHO IS LAUER, THE DIRECTOR, IS ACTIVELY THINKING ABOUT HOW TO TACKLE. ANOTHER PIECE I DIDN'T REALLY MENTION BECAUSE THE STUDY WAS REALLY FOCUSED ON WOMEN IN CLINICAL TRIALS BUT WE HAVE A GAO STUDY THAT WAS CONDUCTED IN 2014 AND 2015, WE HAVE RECOMMENDATIONS, AND OUR APPROACH AT NIH HAS REALLY BEEN TO -- EVEN THOUGH THE STUDY ITSELF WAS FOCUSED ON WOMEN IN CLINICAL TRIALS, WE'RE IMPLEMENTING THOSE RECOMMENDATIONS AS IF THEY APPLY TO OTHER GROUPS LIKE RACIAL AND ETHNIC GROUPS AS WELL. SO THERE'S CONTINUED IMPLEMENTATION OF THOSE, I PROVIDED SOME SUPPLEMENTAL INFORMATION IN THE BACK. I BELIEVE I PROVIDED A LIST OF THE FIVE RECOMMENDATIONS AND THE STATUS OF EACH, SO YOU CAN GET A SENSE OF THE TYPES OF THINGS. IT OVERLAPS A LOT WITH WHAT WAS COMMUNICATED THROUGH THE 21ST CENTURY CURES ACT AS DIRECTIONS WHERE WE CAN BE THINKING ABOUT OUR PORTFOLIO. IT STARTED WITH THE GAO RECOMMENDATIONS AS WELL AS INTERNAL CONVERSATIONS WE'D BEEN HAVING ALONG WITH THE RE-ENGINEERING PROJECT FOR THE PAST SEVERAL YEARS. WE REALLY ARE POISED FOR OPPORTUNITY TO THINK ABOUT INCLUSION AND THIS IS AGAIN THAT KIND OF INCLUSION AT THE INTERFACE OF SCIENCE AND POLICY BECAUSE THERE'S A NUMBER OF OTHER EFFORTS ONGOING AT NIH THAT INCLUSION WILL GET SWEPT UP INTO. THE CLINICAL TRIALS STEWARDSHIP EFFORTS THAT WE'VE BEEN DOING, INCLUSION IS KIND OF RIGHT FRONT AND CENTER IN THE MIDDLE OF ALL OF THAT. RIGOR AND REPRODUCIBILITY EFFORTS OBVIOUSLY WE'VE TALKED A LOT ABOUT WHY INCLUSION IS IMPORTANT. THIS IS A CORE PRINCIPLE IN THAT REGARD AS WELL. THE 21ST CENTURY CURES ACT POLICIES AROUND DATA SHARING, RUTS RESULTS REPORTING, ALSO PART OF THE CLINICAL TRIALS STEWARDSHIP ACTIVITIES IN TERMS OF NOW REQUIRING APPLICABLE CLINICAL TRIALS TO REGISTER AND REPORT IN CLINICALTRIALS.GOV AND EXPECTING ALL OF OUR CLINICAL TRIALS TO REGISTER AND REPORT IN CLINICALTRIALS.GOV AND A PIECE OF THAT WILL BE WHAT POPULATIONS ARE INVOLVED AND WHAT TYPES OF ANALYSES WERE DONE BASED ON THE OUTCOMES AND THE DESIGN OF THE TRIAL. THEN, OF COURSE, WORKING -- AND I KNOW THIS IS A SPACE THAT JANINE CLAYTON, DIRECTOR OF THE OFFICE OF RESEARCH ON WOMEN'S HEALTH WORKED ON A LOT AND IS REALLY ENGAGING WITH THE PUBLISHERS ON HOW TO GET MORE THINKING ABOUT REPORTING RESULTS BY SEX/GENDER, RACE, ETHNICITY, DIFFERENT DEMOGRAPHIC PIECES THAT MAY BE IMPORTANT TO THAT SCIENTIFIC QUESTION. SO THESE ARE THE PLACES THAT ARE ALSO BEING THOUGHT ABOUT WITHIN NIH AS WELL AS OUTSIDE OF IT. SO WITH THAT, I'M HAPPY TO ANSWER QUESTIONS. [APPLAUSE] >> LET ME ASK YOU QUICKLY JUST A COUPLE CLARIFICATIONS. YOU SHOWED ONLY PERCENTS BY RACE ETHNICITY. WHAT WAS THE END DENOMINATOR ROUGHLY OF ALL OF THE HUMANS? >> RIGHT, SO A COUPLE THINGS, AND I OF COURSE HAVE CAVEATS TO ALL OF THIS TOO, BUT THE BIG UNIVERSE IN 2014 WAS AROUND 28 MILLION. SO THAT'S WHY I'M SAYING IT HAS TO BE A PRETTY BIG THING TO MAKE NOISE IN THE DATA. THE CLINICAL TRIAL, THE PHASE 3 CLINICAL TRIALS WAS ABOUT 800,000. SO AGAIN, YOU CAN SEE THEN THE SCALES OF MAGNITUDE AND WHY A CHANGE IN THE PHASE 3 TRIALS MAY BE MORE NOTICEABLE THAN IN THE BIGGER POOL. SOMETHING ELSE THAT I REALLY BASE ON YOUR QUESTION NEED TO POINT OUT, THESE ARE NOT 28 MILLION UNIQUE PEOPLE. WE DON'T TRACK BY PERSON IN THE STUDY. SO YOU COULD HAVE SOMEBODY WHO'S BEEN ON MULTIPLE PROTOCOLS, AND THEY'RE GOING TO BE COUNTED ON THOSE PROTOCOLS BECAUSE THIS IS KIND OF DRIVEN BY AND FRAMED BY THE SCIENCE OF THAT PROTOCOL, OF THAT STUDY. THE OTHER THING TO KNOW IS WE USED TO NOT MONITOR EXISTING DATASETS, SO SAMPLES THAT HAD BEEN PUT IN THE FREEZER AND THEN WOULD BE PULLED BACK OUT FOR SOMEBODY ELSE TO LOOK AT. WE DO THAT NOW, THAT WAS PART OF THE RE-ENGINEERING EFFORT TO SAY WE NEED SOME INSIGHT INTO WHAT'S GOING ON INTO THAT TOO, BECAUSE PEOPLE ARE STILL DRAWING CONCLUSIONS EVEN IF IT'S A SECONDARY DATASET OR AN EXISTING SET OF SAMPLES. SOME OF THOSE AND PARTICULARLY IN 2014, PEOPLE WERE ANTICIPATING THAT CHANGE IN THE POLICY OR ADJUSTMENT TO THE POLICY. AND SO THEY STARTED PUTTING THEM IN THEN. SO WE SAW THAT PEOPLE WERE ACTUALLY ADAPTING THEIR POLICIES AT THE ICs EARLIER THAN THEY WERE REQUIRED TO. SO NOW GOING FORWARD WHEN YOU SEE FUTURE REPORTS OF THIS, WE ACTUALLY WILL BE ABLE TO SPLIT OUT BECAUSE WE ASK OUR INVESTIGATORS TO TELL US IF THEY'RE WORKING WITH AN EXISTING DATASET OR NOT. SO WE CAN GET SOME MORE CLARITY AND TO THE PERSPECTIVE POOL VERSUS THE EXISTING DATASET POOL. >> THANKS FOR THAT CLARIFICATION. I WAS GOING TO ASK ABOUT THAT. THEN YOU DIFFERENTIATED BETWEEN INTERNATIONAL AND DOMESTIC STUDIES. ARE THERE ANY ITEMS THAT ASK ABOUT WHETHER SOMEONE WAS BORN IN THE U.S. OR NOT? >> CURRENTLY, NO. WE DON'T ASK ABOUT BIRTH. IT'S WHERE THEY'RE BEING RECRUITED IS REALLY THE PRIMARY DRIVER. >> TWO QUICK QUESTIONS, THANK YOU SO MUCH FOR A GREAT PRESENTATION. THE FIRST ONE IS GIVEN THAT YOU'VE BEEN IN THAT OFFICE FOR SUCH A LONG TIME, WHAT DO YOU THINK IS MISSING FROM THE INCLUSION POLICY? TO REALLY MAKE IT MEANINGFUL, HAVING NUMBERS THAT PEOPLE CAN USE? THE SECOND ONE IS, I WAS REALLY STRUCK BY HOW LOW ARE YOUR LATINO AND ASIAN NUMBERS, QUITE LOW, TO BE HONEST. AND I WAS WONDERING IF LANGUAGE IS PART OF THE ISSUE. >> SO THE FIRST QUESTION ABOUT THE INCLUSION POLICY, I'LL BE HONEST, FROM MY PERCH. I DON'T THINK MUCH IS MISSING FROM THE POLICY. I THINK IT'S GETTING PEOPLE TO EMBRACE THE FACT THAT THIS SHOULD BE INTEGRAL TO THE THINKING ABOUT THE SCIENCE. WHICH I THINK A LOT OF PEOPLE, MY EXPERIENCE IN GOING OUT TO THE COMMUNITY, PEOPLE ARE KIND OF LIKE, YEAH, BUT THERE DOES STILL SEEM TO BE POCKETS WHERE THERE CAN BE A DISCONNECT AND PEOPLE SAY WELL, YOU KNOW, THESE ARE THE PEOPLE I HAVE ACCESS TO, THIS IS WHAT'S EASIER, IT'S MORE EXPENSIVE, IT'S HARDER. WE MAKE IT REALLY CLEAR, AND JOYCE KNOWS THIS, NO, THAT DOESN'T FLY. BUT THE POLICY ITSELF IS PRETTY CLEAR, IT'S PRETTY STRAIGHTFORWARD AND IT'S PRETTY COMPREHENSIVE, I WOULD SAY. I THINK THE 21ST CENTURY CURES ACT SHINED A LIGHT ON IT, WHICH HELPS, AND ALSO STARTED THIS OTHER PIECE ABOUT TRYING DIFFERENT WAYS OF REPORTING AND ANALYSIS TO BETTER UNDERSTAND OR MORE DEEPLY UNDERSTAND OUR PORTFOLIO. BECAUSE AGAIN, THIS IS A TRANS-NIH KIND OF LEVEL. SO IT'S GOING TO BE AT THE 28 MILLION PERSON LEVEL BUT YOU COULD STILL HAVE VERY USE FELL OR HELPFUL COLONELS OF INFORMATION DOWN IN THE PORTFOLIO THAT COULD BE HELPFUL TO INFORM US, OUR STAKEHOLDERS AND OUR INVESTIGATORS.& TO YOUR SECOND POINT ABOUT THE LANGUAGE, I CAN'T REALLY SPEAK TO BECAUSE I DON'T HAVE A LOT OF EXPERIENCE WITH THAT MYSELF. PROBABLY YOU WOULD GET MORE PERSPECTIVE FROM ASKING PROGRAM STAFF WHO MANAGE THESE TYPES OF AWARDS, WHAT THEY SEE WHEN THEY'RE INVOLVED WITH THE INVESTIGATORS OR ASKING FOLKS IN THE INVESTIGATIVE COMMUNITY WHAT ISSUES THEY'RE SEEING. IT'S NOT SOMETHING THAT HASES COME UP, KIND OF BUBBLED UP AS BEING AN ISSUE, BUT THAT DOESN'T MEAN IT'S NOT ONE. IT JUST MEANS IT HASN'T BUBBLED IN MY SPACE. I DON'T KNOW IF JOYCE OR -- HAVE ANYTHING THEY WANT TO ADD IN THAT SPACE. >> JUST A QUICK QUESTION. THANKS VERY MUCH FOR A GREAT PRESENTATION. JUST WANTED TO ASK, THIS WAS AGGREGATE DATA. YOU HAVE DATA BETWEEN THE DIFFERENT ICs, NUMBER ONE, AND IS IT SKEWED BY SOME OF THEM THAT ARE ABLE TO BE A LOT MORE INCLUSIVE BECAUSE OF THE KIND OF STUDIES YOU'RE DOING, NUMBER ONE, AND THEN NUMBER TWO, I WANTED TO APPLAUD YOU ON PUTTING PUBLICATIONS IN THERE. I'M ONE OF THE ASSOCIATE EDITORS FOR A VERY PROMINENT JOURNAL, AND WE'RE LOOKING AT THESE AND SORT OF SAYING, YOU CAN'T JUST DO ONE POPULATION AND EXPECT TO HAVE THIS BE THE END ALL CATCH ALL FOR A DISEASE PROCESS OR GROUP OR MEDICATION, AND I THINK THAT'S VERY IMPORTANT. >> MM-HMM. ABSOLUTELY. I'M SORRY, SO I GOT INTO THAT PART WHICH I DEFINITELY HAVE DRUNK THE KOOL-AID ON. WHAT WAS YOUR FIRST QUESTION? DIFFERENT ICs. SO -- >> DIFFERENT FOR THE CANCER INSTITUTE, NIMHD, FOR EXAMPLE. >> RIGHT. SO SURE, I WOULD CAUTION ABOUT COMPARING BETWEEN ICs BECAUSE THAT MAKES AN ASSUMPTION THAT WE EXPECT THEY WOULD BE THE SAME. AND WE DON'T NECESSARILY BECAUSE THEIR PORTFOLIOS CAN BE QUITE DIFFERENT. SO I THINK ABOUT INCLUSION AT DIFFERENT LEVELS. YOU HAVE THE BASE LEVEL OF THE STUDY AND WHAT'S GOING ON AND WHAT THE EXPECTATION IS THAT INCLUSION SHOULD LOOK LIKE, THEN WE HAVE OTHER WAYS, AND THIS IS PART OF THE SPACE THAT I THINK OER AND THE GOVERNANCE GROUP ARE GOING TO BE THINKING A LOT MORE ON IN TERMS OF OTHER WAYS WE CAN UNDERSTAND OUR PORTFOLIO BETWEEN KIND OF THE STUDY, THE IC AND THE TRANS-NIH LEVEL. SO I WOULD CAUTION ABOUT COMPARING ICs. WE DO HAVE THE DATA, IT'S AT THAT LINK. SO YOU CAN SEE WHAT'S GOING ON AT EACH IC, IT'S PRESENTED AT THEIR COUNCILS, AND DISCUSSED AT THEIR COUNCILS AND BEFORE THE DIRECTOR WILL SIGN OFF ON IT TO BE RELEASED. SO THERE IS INFORMATION THERE THAT WILL GIVE YOU SOME INCITES INTO WHAT THEIR PORTFOLIO LOOKS LIKE, BUT I THINK THERE'S STILL MORE TO DO IN THIS SPACE IN TERMS OF THINKING ABOUT AND UNDERSTANDING OUR PORTFOLIO FROM DIFFERENT WAYS. SOME PORTFOLIOS DO SPAN ACROSS ICs SO YOU MAY BE ABLE TO GET DIFFERENT PICTURES OF WHAT THE PORTFOLIOS LOOK LIKE DEPENDING ON THE SCIENTIFIC AREA, WHAT OUR EXPECTATIONS ARE AND THE SIZE OF THE PORTFOLIO, THE SIZE OF THE RESEARCH AREA THAT ALL OF THOSE VARIABLES ARE GOING TO IMPACT WHAT THE DATA LOOK LIKE AND WHAT OUR EXPECTATIONS SHOULD LOOK LIKE. >> ANY OTHER COMMENTS? THANK YOU, MAYOR MEREDITH. I THINK WE'LL MISS YOU IN THAT ROLE. I DON'T KNOW IF MIKE IS READY TO REPLACE YOU OR IF ANYONE ELSE IS GOING TO DO THIS. I HAVE A TON OF ISSUES WITH THIS WHOLE PROCESS AS YOU KNOW, AND I JUST HAVEN'T HAD TIME TO GET TO IT. I DO THINK WE NEED MORE SOCIAL DETERMINANTS COLLECTED ON ALL OUR HUMAN PARTICIPANTS. I THINK THERE'S NEVER A MENTION OF SES AND YET WE KNOW HOW MUCH THAT INFLUENCES HEALTH OUTCOMES, MORTALITY OR DISEASES THAT HAVE NO DOUBT ABOUT IT DISPROPORTIONATE EFFECT ON RACE ETHNIC GROUPS AND THEN STUDIES GET PUBLISHED IN TOP JOURNALS WITH NO REPORTING OF RACE ETHNICITY OF WHO WATT IN THE STUDY. AND I THINK THAT HAPPENED VERY RECENTLY IN THE STUDY. THERE MAY HAVE BEEN MANY REASON, THE EDITOR TOOK IT OUT, I DPONT DON'T KNOW, BUT IT'S JUST UNACCEPTABLE IN MY VIEW. IT'S NOT A MATTER OF SAYING YOU'VE GOT TO DO IT, IT'S JUST MORE LIKE SHOW US SO WE KNOW WHAT'S GOING ON. I THINK THE ISSUE OF BIRTHPLACE CAME UP IN PART BECAUSE I WAS CONFUSED BY DOMESTIC, INTERNATIONAL STUDIES. IF WE KNOW THAT HALF OF LATINOS, A LITTLE LESS THAT BE HALF ARE BORN OUTSIDE THE U.S. AND 70% OF ASIANS ARE BORN OUTSIDE THE U.S., THAT MIGHT BE A VERY IMPORTANT DEMOGRAPHIC FACTOR FOR OUR POPULATIONS, IT MAY ACTUALLY BE IMPORTANT FOR OTHER GROUPS TOO IN TERMS OF CERTAIN PARTS OF THE COUNTRY HAVE HIGHER RATES OF DISEASE THAN OTHERS, SOW I THINK THERE'S A LOT MORE WE COULD DO IF WE GOT OUR FOCUS ON THERE, SO I'M SORRY YOU WON'T BE PART OF THAT. THEN THE ATABILITY PIECE IS ALSO IMPORTANT, BECAUSE I COULD BE A GREAT RESEARCHER AND SAY -- THIS IS ACTUAL DATA COLLECTED, NOT PROPOSED, SO I THINK LINKING IT BACK TO WHAT PEOPLE PROPOSE AT SOME POINT WILL BE IMPORTANT. >> THAT'S DEFINITELY ON THE RADAR. SO WE DO HAVE THE INFORMATION THAT THEY PROPOSED AND NOW THAT WE'RE IN THE NEW SYSTEM AND NOW WE HAVE THE CLINICAL TRIALS REFORMS, I THINK THAT PIECE WILL BE COMING IN MORE KIND OF AGO COMBAT AGGREGATE WAYS. IT'S THERE AT THE STUDY LEVEL. >> TAKING OVER YOUR DESK? >> I DON'T KNOW. YOU'LL HAVE TO ASK MIKE. I DON'T KNOW IF THEY'VE NAMED ANYBODY YET, AND OF COURSE THE CURRENT SITUATION WITH HIRING COMPLICATES THINGS. >> THANK YOU VERY MUCH. >> MY PLEASURE. THERE'S ALSO OTHER INFORMATION IN THE BACK. >> THANK YOU. ALL RIGHT. >> SO AT THIS POINT, WE'RE GOING TO MOVE INTO OUR CONCEPTS REVIEW. DR. STINSON WILL INTRODUCE WHAT THE CONCEPT IS, THE PROGRAM OFFICER WILL COME UP AND GIVE THE OVERVIEW. I WILL THEN CALL ON THE COUNCIL REVIEWERS TO GIVE THEIR COMMENTS, WE'LL OPEN THE FLOOR FOR DISCUSSION, AND THEN I'LL ASK FOR A MOTION TO APPROVE THE CONCEPT. >> TODAY WE HAVE TWO CONCEPTS FOR COUNCIL CONCURRENCE FOR POSSIBLE FUTURE INITIATIVES IN THE INSTITUTE. THE FIRST CONCEPT IS COLLABORATIVE MINORITY HEALTH AND HEALTH DISPARITIES RESEARCH WITH TRIBAL EPIDEMIOLOGY CENTERS, AND DR. JENNIFER ALVIDREZ WILL GIVE THE PRESENTATION. >> GOOD AFTERNOON. MY COLLEAGUE IS HERE TO JUMP IN IF I FLOUNDER IN ANSWERING ANY QUESTIONS. SO THE OBJECTIVE OF THIS INITIATIVE IS TO SUPPORT COLLABORATIVE RESEARCH BETWEEN TRIBAL EPIDEMIOLOGY CENTERS OR TECs AND EXTERNAL INVESTIGATORS ON TOPICS RELATED TO MINORITY HEALTH AND HEALTH DISPARENTS IN AMERICAN INDIAN AND ALASKAN NATIVE POPULATIONS. ABOUT FIVE 1/2 MILLION SELF IDENTIFY AS AMERICAN IND YAD ALASKAN NATIVE. THERE ARE 567 STATE AND FEDERALLY REGISTERED TRIBES CURRENTLY. WE HEARD A LITTLE ABOUT THIS BUT THE POPULATIONS AS A WHOLE EXPERIENCE SIGNIFICANT DISPARITIES IN A RANGE OF DISEASES AND HEALTH CONDITIONS. LIKE INFANT MORTALITY, SUICIDE, HOMICIDE, ASTHMA, CARDIOVASCULAR DISEASE, DIABETES, CERTAIN CANCERS. AND A DISTURBING ARTICLE OR FINDINGS WERE RELEASED IN A LANCET ARTICLE LAST MONTH BY SOME INTRAMURAL RESEARCHERS FROM NCI SHOWING THAT WHILE OVER THE LAST 15 YEARS, PREMATURE MORTALITY HAS DECREASED AMONG OTHER U.S. RACIAL ETHNIC MINORITY POPULATIONS, IT IS ACTUALLY INCREASED AMONG AMERICAN INDIAN ALASKAN NATIVE POPULATIONS. SO EVEN THOUGH WE DO KNOW A LOT ABOUT SOME OF THE PATTERNS, HEALTH DISPARITIES RELATED TO AI/AN POPULATIONS, THERE ARE STILL PRETTY SIGNIFICANT GAPS IN WHAT WE KNOW. OFTEN AGGREGATE DATA LUMPING TOGETHER ALL AI/AN POPULATIONS CAN OBSCURE SIGNIFICANT HETEROGENEITY ACROSS DIFFERENT TRIBAL AFFILIATION, REGIONS OF THE COUNTRY, URBAN OR RURAL RESIDENTS AND OTHER FACTORS, THEY ARE OFTEN NOT REPRESENTED IN NATIONAL SURVEYS OR EPIDEMIOLOGICAL STUDIES OR INCLUDED IN NUMBERS TOO SMALL TO ANALYZE SEPARATELY, OR ARE LUMPED TOGETHER WITH OTHER GROUPS IN THE "OTHER" CAT IMRI. SO THE TRIBAL EPIDEMIOLOGY CENTERS OR TECs ARE IDEALLY POSITION TODAY ADDRESS SOME OF THESE GAPS IN THE EVIDENCE BASE AND IN THE PUBLIC RESEARCH LIT TIRE. SO THE TECs WERE ESTABLISHED IN 1996 AND PERMANENTLY RE-AUTHORIZED IN THE ACA. THEY'RE FUNDED AS FIVE-YEAR COOPERATIVE AGREEMENTS BY THE INDIAN HEALTH SERVICE, IHS, AND OTHER FEDERAL AGENCIES, THE CDC, NIH IN PARTICULAR NIMHD, AND THE HHS, OFFICE OF MINORITY HEALTH ALSO PROVIDE PARTIAL FUNDING FOR THESE PROGRAMS. THE LAST CYCLE OF COOPERATIVE AGREEMENTS WERE FUNDED IN SEPTEMBER OF 2016. SO SIMILAR TO THE MAP THAT LINDA B. SHOWED EARLIER, THERE ARE 12 TECs NATIONWIDE AND THEY CORRESPOND TO THE DIFFERENT IHS REGIONS, THE ONE EXCEPTION IS THE TEC IN SEATTLE, RATHER THAN BEING RESPONSIBLE FOR A PARTICULAR REGION, IS RESPONSIBLE FOR ALL URBAN INDIANS. THEY'RE USUALLY OPERATED BY AN IND YAL HEALTH BOARD OR TRIBAL HEALTH CONSORTIUM AS THE GRANTEE ORGANIZATION. SO THE MISSION OF THE TEC IS TO SERVE THE PUBLIC HEALTH DATA NEEDS IN THAT REGION OR AREA. ACTIVITIES THEY ENGAGE IN INCLUDE THE COLLECTION AND ANALYSIS OF HEALTH SURVEILLANCE DATA, THE MAINTENANCE OF PATIENT REGISTRY, THE IMPLEMENTATION AND EVALUATION OF PUBLIC HEALTH INTERVENTIONS AND PUBLIC AWARENESS CAMPAIGNS, THE MOBILIZATION OF RESPONSE TO PUBLIC HEALTH CRISES, THE PRIORITIZATION OF PUBLIC HEALTH STATUS OBJECTIVES AND THE GENERATION OF RECOMMENDATIONS FOR TARGETING AND/OR IMPROVING HEALTHCARE SERVICES, PARTICULARLY THOSE SUPPORTED BY IHS. SO THE TECs HAVE INFRASTRUCTURE TO CONDUCT RESEARCH. THEY HAVE COMMUNITY PARTNERSHIPS IN PLACE, AVENUES FOR GATHERING STAKEHOLDER PERSPECTIVES AND ACCESS TO LOCAL DATA OR THEY ARE THE ONES COLLECTING THAT LOCAL DATA. HOWEVER, BECAUSE TECs' PRIMARY MISSION IS ON SERVING LOCAL NEEDS, THEY HAVEN'T HAD RESEARCH AS A PRIMARY FUNCTION SO THE GOAL HAS NOT BEEN TO DISSEMINATE GENERALIZABLE KNOWLEDGE, BUT REALLY TO GENERATE LOCAL DATA THAT IS RELEVANT FOR PUBLIC HEALTH EFFORTS. THE TECs ALSO VARY IN THE AVAILABILITY AND EXPERTISE OF STAFF TO CONDUCT RESEARCH, THOUGH SOME DO HAVE STAFF WITH RESEARCH BACKGROUNDS AND DEGREES OTHERS DON'T. BUT WHETHER THEY HAVE THAT EXPERTISE OR NOT, THEY MAY NOT HAVE THE TIME TO ENGAGE IN FULL SCALE RESEARCH PROJECTS. SOME TECs HAVE COLLABORATED ON NIH RESEARCH THROUGH THE NATIVE AMERICAN RESEARCH CENTERS ON HEALTH PROGRAM OPERATED BY NI IM. MS, NIGMS. SO WE WANTED TO REALLY OFFER FORMAL OPPORTUNITIES TO SUPPORT RESEARCH INVOLVING THE TECs, SO THIS IS A TRANS-NIH INITIATIVE TO SUPPORT COLLABORATIVE RESEARCH BETWEEN THE TECs AND EXTERNAL INVESTIGATORS WITH AP AN EMPHASIS IN THE AREA OF GAPS IN THOSE POPULATIONS. SO THE RESEARCH WILL INVOLVE PARTNERSHIPS TO INVOLVE COMMUNITY RESPONSIVE SCIENTIFICALLY RIGOROUS PROJECTS WITH FINDINGS DISSEMINATE TODAY LOCAL STAKEHOLDERS AND IHS, WHICH IS REALLY WHAT THE TECs ARE EXPERTS AT, AND DISSEMINATING FINDINGS TO THE SCIENTIFIC COMMUNITY, WHICH WE EXPECT THE EXTERNAL INVESTIGATORS WILL BE EXPERTS AT. THE APPLICANT ORGANIZATION CAN BE THE TEC ORGANIZATION OR THE INSTITUTION OF THE EXTERNAL RESEARCHERS, WE WOULD EXPECT EITHER WAY THAT THERE WOULD BE A GOOD AMOUNT OF RESOURCES GOING TO THE TEC ORGANIZATION OR STAFF. PROJECTS MAY BE OBSERVATIONAL OR INTERVENTION STUDIES, BUT TO USE DATA THAT ARE ALREADY BEING COLLECTED OR HAVE BEEN COLLECTED BY THE TEC, SO THIS IS NOT A VEHICLE TO START NEW INTERVENTIONS BUT REALLY TAKE ADVANTAGE OF WHAT THE TECs ARE ALREADY DOING, DATA THAT'S ALREADY SITTING THERE READY TO BE ANDIZED IN A RESEARCH WAY OR IMPROVED UPON DATA THAT'S ALREADY BEING COLLECTED FOR EVALUATION PURPOSES OR SURVEILLANCE TO SORT OF CONVERT THAT INTO RESEARCH DATA. COMPARISON OF DATA ACROSS TECs IS STRONGLY ENCOURAGED. THERE'S A LONGER LIST IN THE TWO-PAGE WRITE-UP BUT JUST SOME EXAMPLES OF POTENTIAL PROJECTS INCLUDE PROJECTS TO UNDERSTAND OR PREVENT CAUSES OR PREMATURE MORTALITY IN AI/AN POPULATIONS LIKE ACCIDENTS, CHRONIC DISEASES, CIRRHOSIS, SUICIDE, PROJECTS TO UNDERSTAND SIMILARITIES OR DIFFERENCES IN HEALTH STATUS, HEALTH OUTCOMES, HEALTH RISKS WITHIN OR ACROSS TEC CATCHMENT AREA, PROJECTS TO UNDERSTAND SIMILARITIES AND DIFFERENCES IN AI/AN POPULATIONS COMPARED TO NON-AI/AN POPULATIONS WITHIN THE SAME REGION OR CATCHMAN AREA. RIGOROUS RESEARCH EVALUATIONS OF TEC-LED PUBLIC HEALTH INTERVENTIONS OR HEALTH AWARENESS CAMPAIGNS, OR PROJECTS TO DEVELOP AND TEST METHODS FOR RESEARCH WITH SMALL POPULATIONS. SO THIS INITIATIVE HAS BEEN PRODUCED WITH COLLABORATION AND INPUT FROM OTHERS WITH THE PROGRAM STAFF THAT OPERATE THE TEC PROGRAM AT THE INDIAN HEALTH SERVICE. WE PARTICIPATED IN A LISTENING SESSION WITH THE TEC DIRECTORS NOT ABOUT THIS INITIATIVE BUT IN GENERAL ABOUT HOW NIH MIGHT COLLABORATE WITH THE TECs. NIDA, HIESH, NHLBI, NCI AND NIAAA HAVE EXPRESSED INTEREST AND THIS CONCEPT WILL BE PRESENTED TO THE NIH TRIBAL CONSULTATION ADVISORY COMMITTEE OR TCAC NEXT MONTH. >> THANK YOU VERY MUCH. I WILL NOW ASK THE COUNCIL ASSIGNED REVIEWER, DR. ARANETA AND DR. TO GIVE THEIR COMMENTS. >> VERY SUPPORTIVE OF THE INITIATIVE, A COUPLE MINOR THINGS. JENNIFER AND I STARTED TO TALK ABOUT THIS, WE GOT CUT OFF IN THE MIDDLE, IT'S JUST A MINOR CORRECTION, THERE'S 567 FEDERALLY RECOGNIZED TRIBES, THERE'S 200 MORE STATE RECOGNIZED TRIBES, SO IT'S IN THE LITTLE SUMMARY, SO IT'S AN EASY FIX BEFORE YOU PRESENT IT TO THE TRIBAL. >> OKAY. THANK YOU. >> AND TO WHEN YOU SPEAK WITH THE TRIBAL GROUP, AN ISSUE THAT IS COMING OUT BECAUSE OF THE CURRENT EFFORTS TO ELIMINATE ALL OF THE LANGUAGE IN THE AFFORDABLE CARE ACT, AND THE AFFORDABLE CARE ACT IS WHAT PUT THE INDIAN HEALTHCARE IMPROVEMENT ACT AS PERMANENT RATHER THAN US HAVING TO GO BACK AND FIGHT FOR IT EVERY FEW YEARS, AND THAT YOU MAY WANT TO WORK ON THE PHRASING IN CASE THEY CONDITION TO CHALLENGE THAT, AND IT'S THE INDIAN IMPROVEMENT ACT AS WELL AS FOUR OTHERS. DOTTIE, DID YOU SEE IF NIHB HAS THEIR WEBSITE UP TODAY? BECAUSE THEY HAVE -- THE NATIONAL INDIAN HEALTH BOARD HAS INFORMATIONAL BULLETS ABOUT HOW REPEALING OF THE AFFORDABLE CARE ACT IS LIKELY TO IMPACT SO MANY DIFFERENT INITIATIVES AND WE DON'T WANT THIS INITIATIVE TIED IN SO TIGHTLY THAT IT CAN BE SCREWED IF THERE IS EFFORTS TO UNDERMINE IT. WAS THAT SCIENTIFIC LANGUAGE? I DON'T KNOW. [LAUGHTER] >> IN THE DOCUMENT ITSELF, AND I'D BRIEFLY MENTIONED ABOUT WHEN WE WERE TALKING ABOUT KIDNEY, LIVER, STOMACH AND CERVICAL CANCERS, THIS HAS BEEN -- THESE FOUR CANCERS IN PARTICULAR HAVE BEEN HIGHLIGHTED IN MULTIPLE DIFFERENT DOCUMENTS ABOUT AMERICAN INDIANS AND ALASKAN NATIVES, EVEN LIKE CERTAINLY WITH STOMACH AND WITH KIDNEY CANCER, WE'RE LOOKING AT ELEVATED RATES IN THE SOUTHWEST. THEY ARE STILL VERY MINOR CANCERS IF COMPARISON TO BREAST, CERVIX, COLON, LUNG, AND PROSTATE. THERE'S NO COMPARISON IN THE INCIDENCE, SO I THINK TO HIGHLIGHT THAT IN THE LAPG WAJ, SOME OF THESE EPICENTER, THEY DON'T HAVE A CLUE. THEY ARE WORKING WITH TRIBES THAT HAVE LITTLE TO NO INFRASTRUCTURE, GLITZY, THE GREAT LAKES INTERTRIBAL CONSORTIUM IS WORKING WITH TRIBES SUCH AS BAD RIVER THAT REALLY, THEY HAVE HAD NO EXPERIENCE COLLECTING DATA. THEY DO NOT HAVE AN INFRASTRUCTURE TO DO IT AND SO WITH LANGUAGE THAT'S IN HERE, IF IT ENDS UP BEING IN AN FOA, THEY'RE GOING TO THINK THIS IS& SOMETHING TO REALLY LOOK AT, WHEN REALLY THAT PROBABLY ISN'T WHERE THEIR GREATEST EFFORTS SHOULD BE IN SOME OF THESE UNDERSERVED COMMUNITIES. SO I THINK THESE ARE MINOR THINGS. I THINK THE CONCEPT IS EXCELLENT BUT I THINK THE THINGS THAT NEED TO BE CLEANED UP BEFORE IT GOES TO BEING AN F OSM A INOA. THAT THE TRIBES NEED THESE IS DEFINITELY TRUE. THERE ARE AT LEAST THREE OF THESE CENTERS THAT ARE ANXIOUS TO DO NIH RESEARCH. MANY OF THE OTHERS ARE GOING TO NEED A LOT MORE TECHNICAL SUPPORT FROM NIM HD AND THESE OTHER PARTNERING INSTITUTIONS BEFORE THEY'RE READY TO TOUCH THIS, AND THEY THINK NARCH IS THE WAY TO DO IT, AND NARCH HAS NOT DONE QUITE WHAT WE'VE WANTED IT TO DO WHEN WE FIRST PROPOSED IT IN AUGUST OF WHAT, 10 YEARS AGO, 11 YEARS AGO OR WHENEVER THAT WAS. SO THEY'RE GOING TO NEED AN AWFUL LOT OF HAND HOLDING AND I THINK THE STAFF NEED TO BE RE TI READY FOR IT, AND IT'S VERY BASIC THINGS, BUT INFRASTRUCTURE FOR SOME OF THE TECs HAS IMPROVED, BUT IT STILL IS MINIMAL, AND THEIR PARTNERS IN THE RURAL CENTERS IN PARTICULAR ARE INCREDIBLY NON-EXISTENT IN MANY OF OUR TRIBAL STRUCTURES. SO THIS IS GREATLY NEEDED, AND AGAIN, AT LEAST THREE ARE READY TO GO. THEY ARE SO EXCITED TO HAVE SOMETHING THAT'S GOING TO SUPPORT THEM GOING THE NEXT LEVEL BEYOND A SIMPLE PROJECT AND TO REALLY GOING INTO RESEARCH. SO GREAT JOB. >> THANK YOU. DR. ARANETA? >> SO I'M VERY SUPPORTIVE OF ANY EFFORTS TO REMOVE SMALL POPULATIONS FROM "OTHER" CAT IMRIS CATEGORIES THAT DON'T CAPTURE DISPARITIES. I WAS LOOKING AT THE TEC WEBSITE LAST NIGHT AND IT MENTIONED THEY WERE POLLING WEBSITE VISITORS IN DECEMBER 2016 TO ELICIT SUGGESTIONS FOR PUBLIC HEALTH PROJECTS, AND I WOULD ASK THAT WE CONSIDER REVIEWING THESE PROPOSED PROJECTS TO INCLUDE IN THE EXAMPLES. THAT WAY IT REFLECTS THOSE WHO ARE ACTIVELY ENGAGED. I WOULD SUGGEST ALSO USING THIS AS AN EXAMPLE FOR PRINCIPLES OF OUR FRAMEWORK, SO THAT THEY CAN LOOK AT DOMAINS OF INFLUENCE, IT COULD BE SOMETHING SIMPLE LIKE LOOKING AT LIFE COURSE FETAL DETERMINANTS, IS PRETERM BIRTH ASSOCIATED WITH TYPE~2 DIABETES IN ADULTHOOD OR GESTATIONAL DIABETES, AND DEVELOPMENT OF TYPE 2 DIABETES IN ADULTHOOD. THIS OFFERS EXCITING OPPORTUNITIES TO LOOK AT THE ETIOLOGY OF DISEASES IS SUCH AS WHY IS DIABETES PREVALENCE ONLY 6% AMONG ALASKAN NATIVES BUT 50% IN PIMA INDIANS? ARE THERE DIFFERENCES IN PATHOPHYSIOLOGY, INTERVENTION, OR IN TREATMENT RESPONSES? I WOULD LIKE TO ASK THAT YOU CONSIDER INCLUDING TRAINING OF AMERICAN INDIANS, WHETHER THEY'RE RESEARCHERS OR NOT, AS COMMUNITY LEADERS, LANGUAGE THAT REFLECT EQUAL PARTNERSHIP BETWEEN THE EXTERNAL REVIEWERS AND THE TEC LEADERS AND STAFF. ALSO ASK THAT THEY IMPLEMENT IRBs Bs ON THE RESERVATIONS. I WANTED TO KNOW IF THERE'S ANY INTEREST IN THE SAME WAY IN LOOKING AT OUR IMMIGRATION PROGRAM ANNOUNCEMENT, WE WERE LOOKING AT A CULTURATION AND DURATION OF YEARS IN THE U.S. ARE THERE PEOPLE WHO LIVE IN AND OUT OF THE RESERVATION AND COME BACK AND CAN WE LOOK AT YEARS IN THE RESERVATION, DO PEOPLE WHO ARE LIFETIME RESIDENTS OF RESERVATIONS DIFFER FROM THOSE WHO GO OUT OF THE RESERVATION? AND FINALLY, COULD THERE ALSO BE STANDARDIZATION OF TECH DATA TEC DATA SO THAT THEY'RE SIMILAR ACROSS ALL TEC SITES AND COMPARABLE TO CANCER DATA FROM THE SEER REGISTRY OR THE -- >> JUST TO ADDRESS THAT LAST POINT. SOME OF THE TECHS ARE RESPONSIBLE FOR COLLECTING BRFSS DATA IN THAT CATCHMAN AREA, SO THERE IS SOME STANDARDIZATION RELATED TO THE BRFSS AT LEAST, AND I THINK THERE ARE OTHER EFFORTS WITH WHAT THE CDC IS DOING WITH THE TECs TO HAVE STANDARD DATA ELEMENTS. >> AND I JUST WANT TO RESPOND TO THE IRBs FOR THE TRIBES TO DO IT, IT IS INCREDIBLY TIME CONSUMING TO CREATE AN IRB THAT IS FUNCTIONAL AND WITH THE LOW AMOUNT OF INFRASTRUCTURE THAT A LOT OF THESE TRIBAL PROGRAMS HAVE, BUT THEY DO HAVE RESEARCH COMMITTEES THAT THEY CAN RELY ON RATHER THAN IN A FORMAL IRB. SO RIGHT NOW WE STILL HAVE NAVAJO, ALASKAN NATIVE MEDICAL CENTER, AND WE HAVE A MONTANA TRIBAL CENTER, BUT THOSE ARE THE ONLY THREE THAT ARE RECOGNIZED BY NIH. THERE HAVE BEEN COMMUNITIES THAT HAVE BEEN WORKING FOR FOUR YEARS TO TRY TO GET AN IRB IN THEIR TRIBE, AND THERE'S JUST SO MANY REQUIREMENTS ABOUT WHAT NEEDS TO BE DONE AND THEY DON'T HAVE THE PEOPLE TO BE ABLE DO IT, BUT A RESEARCH COMMITTEE IS SOMETHING ELSE, THEY COULD STILL WORK WITH THEM BY ALL MEANS ESPECIALLY FOR COMMUNITY-BASED LEADERSHIP AND INITIATIVES CERTAINLY. >> SO I THINK IF YOU HAVE A DESIGNATED ONE THAT PEOPLE -- AND USER-FRIENDLY, I THINK THAT WOULD MOSTLY HELP. >> WE CAN'T GO THROUGH ALASKAN NATIVE MEDICAL CENTER UNLESS IT'S AN ALASKAN NATIVE COMMUNITY THAT'S INVOLVED WITH IT. SO IT'S LIKE FOR SOME OF US, IF YOUR PROJECT IS IN AN INDIAN HEALTH SERVICE FACILITY OR TRIBAL FACILITY, YOU HAVE TO GO THROUGH THE LOCAL TRIBAL GOVERNANCE, AND THAT COULD BE A COMMITTEE. RATHER THAN AN IRB OR OTHERS OF US LIKE I GO THROUGH WESTERN IRB. FOR ALL OF OUR NIH PROJECTS. BECAUSE THAT ONE HAS BEEN EXPENSIVE BUT THEY'VE GIVEN US REALLY GOOD GUIDANCE FROM WHAT WE'VE NEEDED TO DO. SO THERE ARE OPTIONS AND THEN WE TAKE UNDER LIKE INTERTRIBAL COUNCIL OF MICHIGAN, WE HAVE COMA CHEE NATION, WE HAVE OTHERS THAT COME UNDER US AS WE WORK WITH WESTERN IRB. SO THERE'S WAYS TO GET THE IRB THROUGH THAT STILL IS A RESPECTFUL WAY, NOT NORMAL SYSTEMS. >> MAYBE IT'S SOMETHING TO BRING UP TO DAVID IN THE TRIBAL RESEARCH OFFICE TO WORK ON, TO HELP FACILITATE. WILL YOU SEND YOUR COMMENTS TO JENNIFER AND DOTTIE IN WRITING IF YOU HAVE THEM? SOUNDS LIKE YOU WERE READING OFF YOUR TABLET THERE. OTHER COMMENTS? >> I GUESS I'D LIKE TO ECHO ONE OF THE SUGGESTIONS THAT DR. ARANETA RECOMMENDED AND THAT'S A STRATEGY TO BUILD INFRASTRUCTURE IF IT'S POSSIBLE, RECOGNIZING THE DIFFERENT WORLD OUT THERE. I'VE BEEN WORKING WITH A COMMUNITY HEALTH CENTER FOR 10 YEARS NOW, AND I HELP THEM DEVELOP THEIR OWN HEALTH PROMOTION/RESEARCH DEPARTMENT, SO IT'S NOT SO SCARY AS A RESEARCH DEPARTMENT WITH A PORTFOLIO OF PROJECTS THAT GO FROM SERVICE-ORIENTED PROJECTS TO RANDOMIZED CLINICAL TRIALS, AND BY HAVING THAT SPECTRUM, THE STAFF THAT YOU CAN HIRE BEGAN TO ASSIMILATE INTO THE RESEARCH CULTURE AND UNDERSTAND GETTING IRB CERTIFICATION AND THINGS LIKE THAT, UNDERSTAND THE RANDOMIZATION AND RECRUITMENT, SLOWLY BUT SURELY IT'S EVOLVED AND WE'VE BEEN ABLE TO MAINTAIN A STAFF OF ABOUT 20 PEOPLE SO WHEN WE GET PROJECTS INTO THE HEALTH CENTER, IT CAN BE IMPLEMENTED WELL, BUT IT TAKES TIME AND IT'S IN THE CULTURATION PROCESS FOR ANY INSTITUTION THAT'S NOT THEIR MISSION. >> GREAT IDEA. >> I WOULD EMPHASIZE WHAT YOU DID, WHICH IS THE ISSUE OF TRAINING THE NEXT GENERATION. I THINK FOR NATIVE AMERICAN, IT'S REALLY HART TO FIND OPPORTUNITIES TO BE A TREMENDOUS OPPORTUNITY TO WORKING WITH COMMUNITIES AND TO BECOME LEADERS, EVEN IF IT'S A KIND OF PARTICIPATION OF SOME SORT. WHEN THEY APPLY TO MEDICAL SCHOOL, AT LEAST, MY EXPERIENCE HAS BEEN IT'S A GREAT OPPORTUNITY TO HAVE THEM SAY I WORK IN MY COMMUNITY, I DID THIS RESEARCH, REAL PRODUCTIVE THING FOR THEM, SO I WOULD ENCOURAGE THAT. >> THANK YOU VERY MUCH. MAY I PLEASE HAVE A MOTION TO APPROVE THIS CONCEPT? >> SO MOVED. >> SECOND? >> SECOND. >> ALL IN FAVOR? >> AYE. >> THANK YOU. THE CONCEPT IS APPROVED TO MOVE FORWARD. THANK YOU VERY MUCH. >> THE NEXT CONCEPT IS THE NIMHD CENTER OF EXCELLENCE PROGRAM. DR. TABOR WILL MAKE THE PRESENTATION. >> GOOD AFTERNOON. SO THIS CONCEPT IS THE NIMHD SPECIALIZED CENTERS OF EXCELLENCE FOR MINORITY HEALTH AND HEALTH DISPARITIES. I WANT TO ACKNOWLEDGE MEE COLLEAGUES, DOROTHY CASTILLE AND JENNIFER ALVIDREZ, THAT ALSO ASSISTED ME WITH THIS. THE OBJECTIVE OF THIS IS AS STATED, TO SUPPORT SPECIALIZED RESEARCH CENTERS TO CONDUCT TRANSDISCIPLINARY RESEARCH. RESEARCH TRAINING. AND COMMUNITY ENGAGEMENT ACTIVITIES FOCUSED ON IMPROVING MINORITY HEALTH OR REDUCING HEALTH DISPARITIES. YOU PROBABLY ALL CAN GIVE THIS SLIDE ON THE BACKGROUND, GIVEN THE PRESENTATION WE HAD A LITTLE EARLIER ON THE CENTERS PROGRAM. SO I WANT TO JUST MOVE TO THE SECOND PAIR DPRAF BECAUSE THE FIRST PAIR DPRAF WE'VE HEARD, THE SECOND PARAGRAPH IS THAT NIMHD HAS AUTHORITY TO DESIGNATE A GROUP AS A HEALTH DISPARITY POPULATION AND IN 2016, NIMHD DESIGNATED SEXUAL AND GENDER MY IN OTHER WORDS AS HEALTH DISPARITY POPULATIONS. THIS IS A CHANGE FROM WHEN THE CENTERS OF EXCELLENCE WERE INITIATED IN 2002. THE OTHER PARTS THAT'S IMPORTANT IS THAT THIS LEGISLATION LIMITS COE AWARDS TO ACADEMIC INSTITUTIONS THAT MEET SPECIFIC ELIGIBILITY CRITERIA, AND I'M GOING TO TALK ABOUT THAT NEXT. BEFORE I BEGIN WITH THE SPECIAL ELIGIBILITY CRITERIA. IT ALL PERTAINS TO HEALTH DISPARITY POPULATIONS AND HOW NIH DEFINES THEM. THAT'S ACTUALLY IN THE FIRST BULLET IN THE SECOND SENTENCE. NIH DESIGNATES HEALTH DISPARITY POPULATIONS AS BLACKS OR AFRICAN-AMERICANS, AMERICAN INDIANS/ALASKA NATIVE, ASIANS, HISPANICS OR LATINOS, NATIVE HAWAIIANS AND OTHER PACIFIC ISLANDERS, SOCIOECONOMICALLY DISADVANTAGED POPULATIONS, AND UNDERSERVED RURAL POPULATIONS AND SEXUAL AND GENDER MINORITIES. THIS IS IMPORTANT FOR ALL OF THE OTHER BULLETS AND FOR ALL OF THE BULLETS THAT I'M GOING TO COVER HERE. SO IF WE LOOK AT THAT FIRST BULLET, HAD A SIGNIFICANT NUMBER OF HEALTH DISPARITY POPULATIONS ENROLLED AS STUDENTS IN THE INSTITUTION, INCLUDING INDIVIDUALS ACCEPTED FOR ENROLLMENT IN THE INSTITUTION. THE SECOND BULLET, BEEN EFFECTIVE IN ASSISTING STUDENTS FROM HEALTH DISPARITY POPULATIONS TO COMPLETE A PROGRAM OF STUDY OR TRAINING AND RECEIVE THE ADVANCED DEGREE THAT'S OFFERED. THIRD, MADE SIGNIFICANT EFFORTS TO RECRUIT AND ENROLL HEALTH DISPARITY POPULATION STUDENTS INTO AND GRADUATE FROM THE INSTITUTION, WHICH MAY INCLUDE PROVIDING MEANS-TESTED SCHOLARSHIPS OR OTHER ASSISTANCE AS APPROPRIATE. AND THE LAST BULLET, MADE SIGNIFICANT RECRUITMENT EFFORTS TO INCREASE THE NUMBER OF MEMBERS OF HEALTH DISPARITY POPULATIONS SERVING IN FULL TIME FACULTY OR ADMINISTRATIVE POSITIONS AT THE INSTITUTIONS. I HAVE A LITTLE BIT MORE TO SAY ABOUT THE CRITERIA A LITTLE BIT LATER. SO THE PURPOSE OF THIS PROGRAM IS TO PROVIDE SUPPORT FOR TRANSDISCIPLINARY RESEARCH TO PROMOTE MINORITY HEALTH AND TO ELIMINATE HEALTHDISPARITIES, STRENGTHENING RESEARCH TRAINING/EDUCATION ACTIVITIES, AND EP GAUGING MINORITY AND OTHER HEALTH DISPARITY COMMUNITIES IN EFFECTIVE AND SUSTAINABLE ACTIVITIES IN IMPROVING THE HEALTH OF THEIR COMMUNITIES. EACH CENTER IS EXPECT TODAY HAVE A THEMATIC SCIENTIFIC FOCUS IN A SPECIFIC RESEARCH AREA. RESEARCH THEMES SUPPORTED THROUGH THIS INITIATIVE MAY INCLUDE BUT ARE NOT LIMITED TO SPECIFIC DISEASE AREAS THAT DISPROPORTIONATELY AFFECT DISPARITY POPULATIONS AND CONTRIBUTE SUBSTANTIALLY TO HEALTH OUTCOMES, PREVENTION TOPICS THAT CUT ACROSS HEALTH CONDITIONS AND POPULATIONS, LIFE COURSE PERSPECTIVES, UNDERSTANDING THE ETIOLOGY AND MECHANISMS OF DISEASE AND HEALTH CONDITIONS RELEVANT TO MINORITY HEALTH AND HEALTH DISPARITY POPULATIONS, EVALUATING INTERVENTION APPROACHES TO IMPROVE MINORITY HEALTH OR REDUCE HEALTH DISPARITIES, OR DEVELOPING METHODOLOGICAL APPROACHES OR ADDRESSING MEASUREMENT ISSUES. THE CENTERS ARE EXPECTED TO HAVE THESE THREE CORES: AN ADMINISTRATIVE CORE, AN INVESTIGATOR DEVELOPMENT CORE, COMMUNITY ENGAGEMENT AND DISSEMINATION CORE. AND TO ALSO SUPPORT RESEARCH PROJECTS. ONE TO THREE RESEARCH PROJECTS IS WHAT WE ARE EXPECTING. THERE ARE SOME CHANGES THIS N. THIS INITIATIVE OR THIS CONCEPT FROM WHAT EXISTED PREVIOUSLY. YOU'VE ALREADY HEARD ABOUT THE RECOMMENDATION TO CHANGE FROM THE P20/P60 TO A U54. RESEARCH TRAINING BY THE INVESTIGATOR DEVELOPMENT CORE OR RESEARCH PROJECTS, THAT'S HOW RESEARCH TRAINING WILL HAPPEN. IN THE PAST, RESEARCH TRAINING HAPPENED THROUGH A NUMBER OF DIFFERENT MEANS. PILOT PROJECTS, PERHAPS TRAINING PROGRAMS FOR UNDERGRADUATES, AS WELL AS FOR GRADUATE STUDENTS. THERE WAS JUST A WIDE VARIETY. IN THIS INITIATIVE, WE ARE PROPOSING IT WILL HAPPEN THROUGH THE INVESTIGATOR DEVELOPMENT CORE, WHICH WILL SUPPORT PROJECTS, PILOT PROJECTS, AND THEN THROUGH RESEARCH PROJECTS. A MINIMUM OF ONE, NO MORE THAN THREE. THE OTHER CHANGE IS THAT A CENTER OF EXCELLENCE ARE FOCUSED AROUND A THEME, AND THIS IS A REQUIREMENT. SO AT THIS POINT, DR. HUNTER, THAT CONCLUDES THIS PRESENTATION. >> THANK YOU VERY MUCH, DR. TABOR. THE COUNCIL ASSIGNED REVIEWERS FOR THIS ARE DRS. ALGRIA AND MENDOZA. >> I THOUGHT THIS WAS RIGHT ON TARGET, I LIKE THAT IT'S MULTIDISCIPLINARY, IT HAS PARTNERSHIPS INVOLVED WITH THE COMMUNITY, THAT IT IS INCLUDING NOW PREVENTION AS AN ISSUE, SO I THOUGHT IT HAD ALL THE ELEMENTS OF A GREAT ANNOUNCEMENT, YOU KNOW, A GREAT PROGRAM. I HAD TWO QUESTIONS THAT I HAVE, ONE HAD TO DO WITH THE SUSTAINABILITY OF ACTIVITIES. I WONDER WHAT WAS THOUGHT WHEN YOU PUT THAT AS SOMETHING THAT WAS THERE, WHAT ARE THE SUSTAINABLE ACTIVITIES, IT SAYS IN THE THIRD PARAGRAPH, EFFECTIVE AND SUSTAINABLE ACTIVITIES, SO GIVEN THAT IT'S ONLY A FIVE-YEAR, I WANTED TO SEE HOW YOU WOULD ACTUALLY EVALUATE THAT. I GUESS THE OTHER QUESTION I HAD FOR PEOPLE WHO ARE LOOKING AT THE ANNOUNCEMENT WAS WHETHER THE SPECIFIC DISEASES THERE ARE REALLY -- YOU HAVE TO ADDRESS A SPECIFIC DISEASE OR COULD YOU ADDRESS BASICALLY QUALITY OF LIFE, WELL-BEING, FUNCTIONING, NOT NECESSARILY A SPECIFIC DISEASE. SO THOSE WERE MY QUESTIONS. >> OKAY. THANK YOU. ONE OF THE THINGS THAT WE DID NOT ADDRESS THE FIRST TIME AROUND WHEN THE CENTERS WERE FUNDED, I THINK BECAUSE WE ARE JUST VERY EXCITED TO GET THEM FUNDED, WAS SUSTAINABILITY. HOW CAN YOU SUSTAIN YOUR CENTERS. THIS BECAME CRUCIAL AS THERE BECAME MORE AND MORE INSTITUTIONS INTERESTED IN APPLY APPLYING, AND OUR FUNDING PRETTY MUCH IS FLAT FOR THE PROGRAM. SO IT REALLY BECAME AN ISSUE SINCE EVERYONE COULDN'T RENEW THEIR GRANT, IS HOW WILL THEY SUSTAIN IT. SO WE'RE ASKING THAT CENTERS ADDRESS THIS IN PREPARING THE APPLICATION AND WHAT THEY MIGHT CONSIDER, HOW THEY MIGHT SUSTAIN IT. WE DON'T HAVE PARTICULAR IDEAS ABOUT THIS IS WHAT YOU NEED TO DO, BUT HOW THEY MIGHT BE ABLE TO LEVERAGE THEIR CENTER THROUGH DIFFERENT PARTNERSHIPS, AND ACTUALLY SOME OF OUR CENTERS WERE ABLE TO SUSTAIN THEIR EFFORTS THROUGH ESTABLISHING SOME CREATIVE PARTNERSHIPS, AND SO THAT WOULD BE AGAIN ON THE TABLE, BUT EXACTLY HOW WE DON'T KNOW, BUT WE DO WANT CENTERS TO BE THINKING ABOUT HOW THEY MIGHT SUSTAIN IT, INCLUDING THE INVOLVEMENT OF THE INSTITUTION. HOPE THAT ANSWERS YOUR FIRST QUESTION. THE SECOND QUESTION IS, WHEN DR. DEBORAH D URAND PRESENTED ON THE STRATEGIC PLAN, ONE OF THE THINGS THEY MENTIONED WAS OUTCOMES. ONE OF THOSE WAS QUALITY OF YOU KNOW, WOULD WE SUPPORTUND, RESEARCH AROUND QUALITY OF LIFE, I THINK THE ANSWER TO THAT IS YES, BUT WE ALSO LOOK AT THAT AS AN OUTCOME. SO YES, ONE COULD STUDY WHAT STRATEGIES OR WHAT TYPES OF PROGRAMS ARE LEADING TO IMPROVED QUALITY OF LIFE, AND HOPEFULLY THAT'S A MEASURE IN ELIMINATING OR REDUCING DISPARITIES AND THAT'S ONE OF THE OUTCOME MEASURES THAT ONE WOULD USE, SO I THINK THE ANSWER IS THAT IT'S NOT LIMITED TO THOSE THAT WE PRESENTED, I THINK THAT'S -- YOU DIDN'T ASK IF IT WAS LIMITED BUT IT'S NOT LIMIT TODAY JUST WHAT WAS PRESENTED BUT AGAIN TO LAY A POSSIBLE FOUNDATION TO WHAT YOU MIGHT CONSIDER. WE CAN NEVER INCLUDE THE WHOLE UNIVERSE OF WHAT'S POSSIBLE, BUT CERTAINLY TO GIVE AN IDEA. IS THERE ANYTHING TO ADD ON THAT? >> SO I TOO THOUGHT IT WAS EXCELLENT,, THIS VERY MUCH MATCHES WHAT THE HRSA CENTERS OF EXCELLENCE HAVE ASKED FOR, WHICH IS HAS THE INSTITUTION SHOWN THAT IT HAS A COMMITMENT, RIGHT, TO DIVERSITY ISSUE SES FROM THES FROM THE NUMBER OF STUDENTS THEY HAVE TO THE FACULTY. I THINK ONE OF THE ISSUES WE HAVE AROUND DIVERSITY AND MEDICAL SCHOOLS AT LEAST IS TRANSITIONING THE IDEA THAT DIVERSITY FOLKS ARE GOING TO GO BACK AND PRACTICE ONLY VERSUS ARE THEY GOING TO BE ACADEMIC LEADERS. THIS IS AN OPPORTUNITY TO MAKE THEM ACADEMIC LEADERS. SO I THINK THAT IS REALLY KEY. MOREOVER, I THINK IT IS IMPORTANT TO HAVE STRATEGIC IDEAS OF WHAT POPULATIONS ARE WE LOOKING AT AND HOW SHOULD WE ADDRESS THEM. AGAIN, I THINK ONE OF THE CHALLENGES IS WHEN YOU START LOOKING AT ONE POPULATION, IT'S SOMETIMES HARD TO FIND OTHER INVESTIGATORS THAT HAVE THAT COMMON INTEREST. AND THEREFORE, I WOULD SUGGEST THAT THESE CENTERS NOT ONLY LINK WITH THIS INSTITUTE BUT ALSO AMONG THEMSELVES AND DEVELOP A STRONG FRAMEWORK FOR HOW ARE THEY GOING TO DEVELOP THE NEXT GENERATION OF INVESTIGATORS, HOW ARE THEY GOING TO GET PEOPLE TO GET K AWARDS. BECAUSE AT THE END OF THE DAY, I THINK THE CHALLENGE THAT WE HAVE IS, AS THESE GRANTS ARE FUNDED AND THEN THEY GO AWAY, THE ONLY GROUP THAT CAN SUSTAIN ITS RESEARCH ARE THOSE THAT CAN FIND FUNDING AND THOSE THAT HAVE THE RESEARCH TRAINING TO DO SO. SO I THINK THAT HAS TO BE A REALLY SHARP FOCUS ON THESE PROJECTS. I THINK CERTAINLY THE COMMUNITY INPUT NEEDS TO BE A PART OF THIS. I THINK IT WAS MENTIONED THAT IT IS. INDEED, I THINK RIGHT NOW THERE IS SUCH A -- IN MY OTHER HAT AS A DEAN, I SEE SUCH A CONCERN AMONG STUDENTS AND FACULTY ABOUT THINGS LIKE BLACK LIVES MATTER, IMMIGRATION, LGBTQ RIGHTS, ASIAN AMERICAN ISSUES, SO I THINK AT THE END OF THE DAY, THIS CENTER WOULD HAVE BOTH ITS RESEARCH AGENDA, ITS PUBLIC HEALTH AGENDA AND BETWEEN THOSE TWO, THE POLITICAL AGENDA, WHICH IS HOW DO WE REALLY GET REAL FACTS OUT TO THE PUBLIC. PARTICULARLY FOR MY INTEREST RIGHT NOW ON IMMIGRATION, WE SOMETIMES HAVE ALTERNATIVE ACTS OUT THERE AND I THINK THAT THE ISSUE ABOUT RESEARCH IS GOOD SCIENCE PRODUCES SOMETHING TRUE ABOUT REALITY, AND I THINK RIGHT NOW, IT'S HARD TO KNOW WHAT REALITY IS FOR SOME PEOPLE. THAT TO ME IS REALLY THE KEY FOR THIS. BECAUSE AS WE LOOKED -- IT HASN'T GOT INTO THE RESEARCH COMMUNITY. AND WE STILL HAVE TO ASK PEOPLE, CAN YOU LOOK AT THE MINORITY GROUPS? THIS IS 30 YEARS AFTER WE'VE DONE THIS EFFORT, RIGHT? WE STILL HAVE TO ASK, HAVE YOU LOOKED AT MINORITIES? IN CALIFORNIA, HALF OF THE KIDS ARE LATINO, RIGHT? SO WHEN THEY DON'T DO THINGS LIKE YOU DON'T HAVE SPANISH TRANSLATIONS, THAT ELIMINATES ONE-THIRD OF THE POPULATION OF KIDS. SO IT'S JUST NOT REALLY GOOD SCIENCE. SO I THINK THE ISSUE ABOUT THE CENTERS IS THAT THEY BOTH HAVE TO BE GREAT SCIENCE BUT ALSO GREAT ADVOCATES FOR THIS KIND OF SCIENCE, AND THIS KIND OF EFFORT TO MAKE IT HIGH QUALITY SCIENCE. SO THOSE ARE JUST COMMENTS MORE THAN QUESTIONS, BUT I THINK THAT'S THE PART THAT I THINK WHOEVER APPLIES FOR IT NEEDS TO THINK ABOUT THOSE THINGS. >> THANK YOU. I WOULD JUST SAY ONE THING ABOUT THE ADVOCACY PART BECAUSE IT WAS MENTIONED IN THE CENTERS PRESENTATION, BUT I THINK ONE OF THE TCCs HAVE REALLY DONE HAS TO INCREASE THE KNOWLEDGE AND AWARENESS OF THE EXISTENCE OF HEALTH DISPARITIES AND THE IMPORTANCE OF RESEARCH TO BE CONDUCTED TO IMPROVE/REDUCE DISPARITIES DISPL. IS THERE A COMMUNICATION PIECE TO THIS EFFORT IN TERMS OF COMMUNICATING TO THE COMMUNITIES AND WHAT THAT PROCESS IS GOING TO BE? I THINK THAT IF IT'S ONLY ANOTHER PRODUCTION OF PAPERS THE COMMUNITY DOESN'T READ OR OTHER GRANTS THAT THEY'RE NOT INVOLVED WITH, WE'RE MISSING AN OPPORTUNITY REALLY TO HAVE TREMENDOUS INFLUENCE. SO COMMUNICATION METHODOLOGIES OUGHT TO BE THOUGHT ABOUT AS WE DEVELOP THESE CENTERS. >> IT'S IMPORTANT. THANK YOU. >> LET ME JUST IPT JECT JUST INTERJECT THA T FEDERAL FUNDING IS NOT TO BE USED FOR ADVOCACY, THAT IS SOMETHING WE DO NOT DO. WHAT YOU DO AS AN ACADEMIC INSTITUTION, YOU KNOW, ON YOUR -- UTSIDE OF YOUR FEDERAL FUNDING IS GREAT BUT NOT SOMETHING WE CAN USE. WE DO RESEARCH ON POLICY, WE CAN DO RESEARCH ON POLICY, WE WANT TO ADVANCE THE VIE ENS, AND AS DR. THOMAS EARLIER SAID, YOU KNOW, KREE AID AITING CENTERS OF EXCELLENCE OR OUTSTANDING INVESTIGATORS AT HIGH POWERED AS WELL AS LOW RESOURCE INSTITUTIONS IS A WAY TO ADVANCE THE FIELD, AND THE PROGRESS WE HAVE MADE IN THE 17 YEARS OF THE CENTER AND INSTITUTE'S EXISTENCE IS REALLY SOMETHING TO BE CELEBRATED AND PUSHED FORWARD AS WELL AS, YOU KNOW, THE FOUNDATION PRIOR TO THAT. SO JUST WANT TO REMIND US OF THAT IMPORTANT DIFFERENTIATION FOR THE RECORD. ANYWAY. >> A FEW QUICK POINTS. ONE IS TO REALLY SECOND WHAT STEVEN THOMAS HAS SAID, THESE CENTERS HAVE BEEN ACTUALLY SORT OF IMPORTANT IN ELEVATING THE SIGNIFICANCE OF HEALTH DISPARITIES RESEARCH TO A LOT OF INSTITUTIONS THAT WOULD NOT HAVE DONE OTHERWISE. SO I THINK THIS IS VERY IMPORTANT, AND I THINK IT'S WONDERFUL THAT WE ARE AS A CENTER RE-EVALUATING AND REFRAMING THE MISSION FOR THESE CENTERS. THIS IS VERY TIMELY IN MY OPINION. TWO OTHER SORT OF CAUTIONARY SORT OF COMMENTS. ONE IS YOU KNOW, WHEN YOU THINK ABOUT THE RETURN ON INVESTMENT, ONE OF THE KEY SORT OF EVALUATION METRICS THAT YOU GUYS HAVE TALKED ABOUT, ONE WAY TO LOOK AT IT IS HOW MUCH -- HOW MANY DOLLARS ARE YOU LEVERAGING FOR THE DOLLAR YOU GET FROM THE CENTER? AND THIS IS SOMETHING THAT ACTUALLY -- IN THE CENTER THAT I LEAD HAS DONE IT. WE'VE REPORTED IT ON AN ANNUAL BASIS TO SAY FOR EVERY DOLLAR YOU GIVE US, WE BRING IN $20, AND THAT'S HOW WE BUILT A MASS OF -- A COMMUNITY OF HEALTH DISPARITIES INVESTIGATORS. SO I THINK THAT'S VR IMPORTANT. BUT THE OTHER SIDE OF THE RETURN ON INVESTMENT IS NOT JUST THE PUBLICATIONS, BUT THE IMPACT. OF THE WORK ITSELF. AND THIS HAS BEEN A VERY DIFFICULT SUBJECT, METRIC, TO REALLY GET AT. AND I'M JUST WONDERING IF THERE'S AN OPPORTUNITY TO THINK ABOUT THIS. HOW DO WE EVALUATE THE IMPACT OF THE CENTERS ON HEALTH EQUITY? IS IT JUST BY WHO PUBLISHES IN THE NEW ENGLAND JOURNAL OF MEDICINE? AND IF THAT IS THE CASE, THEN I THINK WE MAY DO SORT OF TAKE THE EASY WAY OUT. I THINK THERE HAS TO BE A WAY TO SORT OF SAY HAVE WE ACTUALLY NARROWED THE ISSUES AND THE PROBLEMS. THE LAST THING I WAS GOING TO SAY IS IN TERMS OF ASSESSING THE INSTITUTIONAL COMMITMENT TO THE 16 BE TER, CENTER, I WOULD MAKE SURE THAT LOOK AT HOW MUCH MONEYION, WE INSTITUTIONS ARE PUTTING ON THE TABLE AS A COLLATERAL FOR THE CENTER. AND I THINK THAT'S ANOTHER WAY TO SORT OF DO THAT. A LOT OF INSTITUTIONS MAY SAY OH, THIS IS WONDERFUL, BUT NOT PUT ANY DOLLARS ON THE TABLE. OTHERS WILL ACTUALLY SORT OF, YOU KNOW, PUT SOME MONEY ON THE TABLE AND SAY WE WILL MATCH THE INVESTMENT. SO JUST WANTED TO SORT OF ADD A FEW POINTS TO THE DISCUSSION. >> THANK YOU, THOSE ARE ALL IMPORTANT POINTS, SAID. PEOPLE LOOKING AT IMPACT FACTOR AND STUFF LIKE THAT, YOU'RE RIGHT, IT'S NOT JUST PUBLICATIONS, IT'S INFLUENCE ON THE FIELD, AND EXPECT CENTERS OF EXCELLENCE TO CHANGE DISPARITIES, IT MAY BE TOO HIGH OF A BAR, BUT I THINK IT'S IN THAT KIND OF -- SOMEWHERE IN BETWEEN. I THINK EARLIER, FERNANDO ASKED ABOUT THE COMMUNITY.& THERE'S COMMUNITY ENGAGEMENT AND DISSEMINATION CORE THAT'S REQUIRED, SO WHAT WOULD THE P.I. DO WITH THAT DEPENDS. I THINK ONE OF THE IDEAS IS YOU GIVE BACK TO THE COMMUNITY IN SOME WAY. OTHERS MAY USE IT AS THE CENTRAL CORE OF A COMMUNITY-BASED PARTICIPATORY RESEARCH MODEL, OTHERS MAY USE IT FOR RECRUITMENT, OR JUST KIND OF HAVING A NET NETWORK OF SUPPORT IN THE COMMUNITY, SO I THINK IT'S OPEN IN THAT REGARD BUT IT DOES REQUIRE THEM TO HAVE RESOURCES INVESTMENT IN MAINTAINING COMMUNITY ENGAGEMENT. THE ONE PROBLEM I HAVE WITH INSTITUTIONS, PUTTING MONEY ON THE TABLE, IS THAT THE ONES THAT ARE ABLE TO DO THAT ARE THE HIGH END PRIVATE INSTITUTIONS. HAVING SPENT MY ENTIRE CAREER ON A STATE INSTITUTION THAT SAYS YOU'RE ONLY AS GOOD AS YOUR NEXT GRANT, YOU KNOW, I DON'T SEE -- THAT'S A CHALLENGE AND CERTAINLY WE TALK ABOUT LOW RESOURCE INSTITUTIONS YESTERDAY, THEY WOULD BE HARD PRESSED TO DO THAT THAT. SO I THINK THAT'S A QUALIFIER I WOULD HAVE. IT CERTAINLY WOULD BE WELCOMED, BUT IT WOULDN'T BE, I THINK, SOMETHING THAT WE'D EXPECT HAVING SEEN THAT. AND THAT CAME FROM A HIGH RESOURCE INSTITUTION, THE FLEXIBILITY WAS LIMITED IN SOME. [[INAUDIBLE] >> I THINK ONE OF THE -- I THINK THE LEVERAGING OF CREATING THESE NETWORKS, I THINK COULD BE A METHODOLOGY TO BEGIN TO TALK ABOUT SUSTAINABILITY AS YOU START TO FORM THESE GROUPS, AND I'LL JUST GIVE YOU ONE EXAMPLE OF SOMETHING THAT'S HAPPENING WITHIN OUR COMMUNITY LOOKING AT BREAST CANCER AND SURVIVING BREAST CANCER. A MODEL THAT WAS DEVELOPED MANY YEARS AGO WAS TO LOOK AT HOW WE COULD USE NUTRITION EXPERTS TO GO IN AND DO ANTI-INFLAMMATORY FOOD PREPARATION FOR WOMEN WHO WERE RESPONDING FROM BREAST CANCER, AND THERE HAS BEEN A BIG MOVEMENT IN OUR COMMUNITY THAT EVERY YEAR, THERE IS A MAJOR GIRLS WHO HAVE A FOCUS ON PREVENTION OF BREAST CANCER AND THIS WHOLE IDEA OF THEM GOING DOWN TO THE CONVENTION CENTER DOWN IN PHILADELPHIA AND THEY JUST HAD THIS WHOLE WEEK END WHERE THEY WERE INVOLVED IN GYMNASTICS AND THEY HAVE A GYMNASTICS COMPETITION EVERY YEAR AND THEY RAISE OVER A MILLION DOLLARS -- I THINK ONE OF THE THINGS CAN YOU DO IS TO DEVELOP IDEAS IN OTHER COMMUNITIES TO HELP SUPPORT INVESTIGATORS TO SEE HOW THEY CAN LEVERAGE KNOWLEDGE THAT THEY HAVE TO JUST SHARE AND HOW DO YOU GET COMMUNITIES ENGAGED IN FUND-RAISING, AND THAT'S A MODEL THAT HAS BEEN REALLY EFFECTIVE TO TRY TO INCREASE THE AMOUNT OF RESOURCES, BUT THOSE ARE THINGS THAT INVESTIGATORS NEVER THINK ABOUT, THOSE ARE THINGS THAT DEANS ALWAYS THINK ABOUT, THE SUSTAINABILITY OF A CENTER OF EXCELLENCE, AND SO WHEN I'M TALKING TO FACULTY, I ALWAYS, YOU KNOW, ASK THEM TO TELL ME STORIES THAT I CAN SHARE WITH POTENTIAL PEOPLE WHO CAN INVEST IN THEIR SCIENCE AS WELL. BUT I DON'T THINK THAT THAT'S PART OF THE CONVERSATION ALL THE TIME, BUT I THINK AS YOU BRING PEOPLE TOGETHER, YOU CAN HAVE PEOPLE TO COME IN AND TALK ABOUT HOW DO YOU DEVELOP CAPACITY WITHIN INVESTIGATORS ON HOW TO DO ALTERNATIVE FUND-RAISING AND PEOPLE WHO WOULD INVEST IN THEIR SCIENCE. >> ANY THOUGHTS ON THE SIZE OF THE RESEARCH PROJECTS? I KNOW YOU SAID BETWEEN 1 AND 3. ARE WE TALKING R01 LEVEL, R21, OR IS IT GOING TO BE UP TO THE APPLICANT, AND THE GOVERNANCE STRUCTURE, PROJECT LEADER, FOR THE RESEARCH PROJECTS, OR WILL THEY BE CONSIDERED A P.I. AS WELL? THAT'S ALWAYS BEEN AN ISSUE IN THESE CENTER GRANTS. >> THOSE ARE SOME THINGS THAT WILL HAVE TO BE WORKED OUT FOR THE -- AT THE INSTITUTION IN TERMS OF -- OR THE APPLICANT IN TERMS OF HOW MANY PROJECTS TO SUBMIT. ONE COULD ENVISION ONE VERY LARGE GRANT AND THEN MAYBE THREE SMALL ONES. IT JUST ALL DEPENDS ON THE FINAL AMOUNT THAT WE ACTUALLY PUT FORWARD FOR RESEARCH PROJECTS, BUT WE'LL FIGURE SOME PLACES MAY WANT TO HAVE ONE LARGE ONE, OTHERS MAY WANT TO HAVE SOME SMALL ONES. >> YOU COULD DO LIKE AN R01 AS EMBEDDED IN THE CENTER GRANT, SO THAT SIZE OF PROJECT, KNOWING THAT YOU HAVE OTHER SUPPORT WITHIN THE CENTER SO IT'S NOT NECESSARILY TAKING MONEY OUT OF YOUR BUDGET. OR YOU COULD SAY WE WANT SLEEKER, YOU KNOW, LEVEL GRANTS, SMALLER GRANTS. IT WILL BE UP TO THE INVESTIGATOR. >> PREVIOUS FUNDING CYCLES, OUTSTANDING TO EXCEPTIONAL IN ORDER FOR THE CENTER GRANT TO BE FUNDED. >> ONE LAST THING, I'M GOING TO INVEST WITH DR. IBRAHIM, I'LL BRING A DOLLAR, $20, I CAN HANG OUT WITH YOU. >> I THINK THE OPPORTUNITY HERE, ONE OF THE THINGS THAT THE WORKING GROUP WAS TRYING TO STRESS AS WELL, WE TALK ABOUT THE UNDERRESOURCED CENTERS AND THOSE CENTERS WHO MIGHT HAVE A LOT MORROW SOURCES, TRYING TO FIND WAYS TO COLLABORATE IN A TRANSDISCIPLINARY AND INTERINSTITUTIONAL WAY, AND TO THINK ABOUT DEVELOPING RESEARCH CAPACITY AS WELL AS DEVELOPING NEW INVESTIGATORS, THIS PRESENTS A SPECTACULAR OPPORTUNITY BECAUSE MANY OF THE TRADITIONAL TRADITIONAL -- WHERE MINORITY STUDENTS WILL BE, THOSE PEOPLE TRYING TO GET INTO RESEARCH AND& THAT SORT OF THING, SO OPPORTUNITIES TO HAVE THOSE INSTITUTIONS PUT TOGETHER CREATIVE GRANTS THAT YOU CAN EVALUATE THAT HOPEFULLY WILL BRING THIS TO THE FORE, AND WE'RE SORT OF HOPING FOR THAT AS ONE OF THE OUTCOMES. >> THANK YOU. ARE THERE ANY OTHER COMMENTS? IF NOT, MAY I HAVE A MOTION TO APPROVE THE CONCEPT? >> SO MOVED. >> SECOND? ALL IN FAVOR? ANY OPPOSED? THANK YOU VERY MUCH. THE CONCEPT IS APPROVED. GO FORWARD. >> THANK YOU, DERRICK, AND THANK YOU, EVERYONE. WE HAVE OPPORTUNITY FOR ANY COMMENTS FROM THE PUBLIC. I KNOW NOBODY REGISTERED SAYING THEY WANT TO SAY SOMETHING, BUT IF ANYBODY DOES -- NO? ALL QUIET ON THE WESTERN FRONT? OKAY. SO THANK YOU, IT'S BEEN A GREAT MEETING. THANKS, EVERYONE, FOR HANGING IN THERE. WE WILL BE RECONVENING IN JUNE. I THINK HOPEFULLY WE'LL BE ABLE TO FIND OUT ABOUT OUR NEW SLATE SOON, SO WE'LL HAVE A NEW OPPORTUNITY HERE. IF NOT, WE'LL HAVE TO FIGURE SOMETHING ELSE OUT. BUT HOPEFULLY ALSO OVER THE NEXT TWO MONTHS, WE'LL FIGURE OUT WHAT OUR BUDGET IS THIS YEAR. KEEP READING THE NEWS, THAT'S HOW WE FIND THINGS OUT TOO. AND -- OR IF YOU WANT TO GET UP EARLY AND CHECK YOUR TWITTER ACCOUNT, THEY ARE IN SAN FRANCISCO, BY THE WAY, SO -- BUT I WANT TO THANK EVERYONE FOR THEIR CONTRIBUTIONS AND PARTICIPATION, AND I LOOK FORWARD TO ONGOING COMMUNICATION WITH YOU AND SOME OF YOU WILL HEAR FROM ME ABOUT THE PRAN THAT PLAN WE DISCUSSED YESTERDAY ABOUT EVALUATING THE ENDOWMENT PROGRAM. SO THIS MEETING IS NOW ADJOURNED.