I'M THE DIRECTOR OF THE NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES AND I WANT TO THANK YOU FOR JOINING US FOR TODAY'S NIMHD DIRECTOR'S SEMINAR SERIES. FEBRUARY IS BLACK HISTORY MONTH AN ANNUAL CELEBRATION OF ACHIEVEMENTS BY AFRICAN-AMERICANS AND A TIME FOR RECOGNIZING THEIR CENTRAL ROLE IN THE HISTORY OF THE UNITED STATES. TO HELP HONOR BLACK HISTORY MONTH I ASKED DR. CONSUELO WILKINS TO JOIN US TODAY. DR. WILKINS EARNED HER BACHELOR OF SCIENCE FROM RIGHT HERE IN WASHINGTON, D.C. SHE COMPLETED HER RESIDENCY AT DUKE UNIVERSITY. AND A GERIATRIC FELLOWSHIP AT WASHINGTON SCHOOL OF MEDICINE. AND FOLLOWING HER CLINICAL TRAINING SHE EARNED A MASTER OF SCIENCE FROM WASHINGTON UNIVERSITY SCHOOL OF MEDICINE. AROUND THAT TIME I FIRST CROSSED PATHS ALTHOUGH I CANNOT REMEMBER WHEN. I WAS INVOLVED WITH THE RESEARCH CENTER AND MINORITY AGING RESEARCH AND IT WAS THROUGH ONE OF THOSE NETWORKS THAT WE CROSSED PATHS. TODAY SHE IS SENIOR VICE PRESIDENT -- AT VANDERBILT UNIVERSITY MEDICAL CENTER. SHE IS NATIONALLY AND INTERNATIONALLY RECOGNIZED THOUGHT LEADER IN HEALTH EQUITY AND ADDRESSING SYSTEMATIC INEQUITIES THAT IMPACT THE HEALTH OF ETHNIC GROUPS. HER RESEARCH IS EXTENSE I AND FOCUSED ON DISPARITIES BROADLY. SHE IS THE PRINCIPLE INVESTIGATOR ON ONE OF OUR RESEARCH CENTERS THAT WAS PART OF THE COLLABORATIVE CENTERS IN COLLABORATION WITH THE UNIVERSITY OF MIAMI. SHE IS ALSO THE PRINCIPLE INVESTIGATOR OF THE VANDERBILT INSTITUTE FOR CLINICAL AND TRANSLATIONAL SCIENCE RESEARCH. AND SHE IS ALSO THE PRINCIPLE INVESTIGATOR OF THE NATIONAL RECRUITMENT INNOVATION CENTER WHICH IS ALSO PART OF THE NETWORK. SHE IS DIRECTOR OF THE ENGAGEMENT CORE OF THE NIH ALL OF US RESEARCH PROGRAM FAMILIAR TO ALL OF US HERE AT NIH AS A NATIONAL COHORT ONGOING WITH NOW WELL OVER HALF A MILLION ENROLLED PARTICIPANTS. IN ADDITION CONSUELO HAS BEEN AN ACTIVE INVESTIGATOR. PUBLISHED OVER A HUNDRED PEER REVIEWED PAPERS. 7 SHE HAS RECEIVED MANY AWARDS BUT ESPECIALLY NOTE THAT SHE IS AN ELECTED MEMBER OF THE NATIONAL ACADEMY OF MEDICINE AND PREVIOUSLY SELECTED TO THE AMERICAN SOCIETY FOR CLINICAL INVESTIGATION. TODAY HER PRESENTATION WILL BE ENTITLED THE INTRACTABILITY OF HEALTH DISPARITIES: WHERE DO WE GO FROM HERE. PLEASE WELCOME DR. CONSUELO WILKINS. >>THANK YOU SO MUCH. IT IS REALLY AN HONOR TO BE HERE WITH YOU. AND YOUR TEAMS AND REALLY APPRECIATE THE OPPORTUNITY TO SHARE SOME OF MY TEAM'S WORK BUT ALSO TO ALWAYS LEARN FROM YOU AND THE INCREDIBLE WORK THAT YOU ALL ARE DOING. AS I WAS THINKING ABOUT WHAT I WOULD SHARE AND WHAT TO TALK ABOUT CERTAINLY UNFORTUNATELY WE CONTINUE TO HAVE SUBSTANTIAL INEQUITIES AND DISPARITIES IN RACIAL HEALTH OUTCOMES ACROSS THE COUNTRY. AND UNFORTUNATELY THIS CONTINUES TO BE PERVASIVE AND IN TRACTABLE. * I'LL SAY MORE ABOUT THE SUBTITLE -- SHORTLY BUT WANT TO FIRST ACKNOWLEDGE -- THE FUNDING THAT I'VE RECEIVED. I'VE BEEN FORTUNATE TO HAVE FUNDING FROM OTHER INSTITUTES AT NIH AS WELL AS PER KHOURY -- * AMERICAN COLLEGE OF RADIOLOGY AND THE ALZHEIMER'S ASSOCIATION. I'M GOING TO TALK ABOUT ONE OF THOSE STUDIES THOUGH IT'S NOT FOCUSED ON DRUG DEVELOPMENT. I WANT TO BE TRANSPARENT THERE. I FOCUS THE TALK AGAIN ON SETTING THE FRAMING FOR THE PERVASIVENESS OF THESE HEALTH DISPARITIES AND REMINDING EVERYONE OF THE SOCIAL AND STRUCTURAL DETERMINANTS THAT UNDERLIE THESE. IT'S INCREDIBLY IMPORTANT THAT WE AS SCIENTISTS AND HEALTH CARE PROFESSIONALS ACKNOWLEDGE OUR ROLE IN CREATING AND PERPETUATING AND MAINTAINING THESE RACIAL HEALTH INEQUITIES. BUT AS WE MOVE FORWARD THINKING THROUGH HOW WE CAN ACTUALLY MAKE A DENT MAKE PROGRESS AND ADJUSTING AND ADDRESSING THESE DISPARITIES WHAT ARE THE OPPORTUNITIES BY EMBEDDING EQUITY AT SPECIFIC PLACES IN OUR OWN RESEARCH BUT ALSO THE IMPORTANCE OF SYSTEMS LEVEL CHANGE. I HOPE TO COVER THESE OBJECTIVES THROUGHOUT MY TALK. I'LL ALSO ACKNOWLEDGE MY COLLABORATORS. THIS MAY NOT LOOK LIKE YOUR TRADITIONAL SLIDE. I BELIEVE VERY MUCH IN ENGAGING THE COMMUNITY AS YOU'VE HEARD. AND I'VE LEARNED SO MUCH FROM INDIVIDUALS WHO ARE IN DIFFERENT COMMUNITIES ACROSS THE COUNTRY BUT CERTAINLY ALSO WITHIN OUR ORGANIZATIONS LOCALLY IN NASHVILLE. YES, THERE ARE PICTURES OF MY FAMILY THERE. I DO MAKE THEM WORK AS WELL AT TIMES IN HELPING TO SUPPORT THIS REALLY IMPORTANT WORK THAT AGAIN HAS BEEN AN HONOR FOR ME TO BE INVOLVED IN. SO SOME OF YOU MAY RECOGNIZE THE BOOK OR HAVE ALREADY RECOGNIZED THE BOOK -- DR. MARTIN LUTHER KING JR.'S BOOK WHERE DO WE GO FROM HERE. I PULLED THE SLIDE FROM THREE YEARS AGO WHEN I WAS DOING A PRESENTATION ON DR. KING'S HOLIDAY CELEBRATION AND WHERE DO WE GO FROM HERE. THIS WAS BEFORE THE PANDEMIC COVID-19. IT WAS BEFORE THE FOCUS THE INCREASE RECOGNITION OF RACIAL IN JUSTICES FOLLOWING THE MURDER OF GEORGE FLOOD AND BRIANNA TAYLOR AND OTHERS THAT BROUGHT ATTENTION TO THIS IN 2020. WHERE DO WE GO FROM HERE CHAOS OR COMMUNITY. IT'S SO IMPORTANT FOR US TO DECIDE IN THE SPACE OF RESEARCH IN GENERAL BECAUSE RIGHT NOW WE'RE CONTINUING TO HEAD JUST TOWARDS CHAOS. AND UNLESS WE DO THINGS DIFFERENTLY WE'LL CONTINUE TO SEE THESE RACIAL AND ETHNIC HEALTH DISPARITIES PERPETUATED, MAINTAINED AND PERHAPS EVEN GROWING. AND SO AS I WAS THINKING ABOUT THIS SEVERAL YEARS AGO A LOT OF FOCUS SO MUCH ON DR. KING'S WORK HAS BEEN THINKING ABOUT HOW TO SUPPORT NONVIOLENT WAYS EQUITY BUT UNDERLYING THIS WORK WAS THE FOCUS ON EQUALITY AND SHIFTING THAT FOCUS UPSTREAM TOWARDS ECONOMIC, PROGRESS AS AN IMPORTANT OPPORTUNITY FOR RACIAL JUSTICE AND MOVING TOWARDS RACIAL EQUITY. AS WE AGAIN CONTINUE TO IMAGINE A COUNTRY OR WORLD WITHOUT THESE RACIAL AND HEALTH INEQUITIES HOW WE GET THERE IS IMPORTANT. THESE ARE JUST A FEW THINGS THAT I MENTIONED DURING THAT TIME THREE YEARS AGO. MY PRESENTATION TODAY IS GOING FOR FOCUS NOT ON THE HEALTH CARE DELIVERY SIDE BUT ON THE RESEARCH SIDE. THERE ARE SOME SIMILARITIES HERE IN THINKING ABOUT THE PRACTICES AND POLICIES AND SYSTEMS THAT THESE INEQUITIES HAVE BEEN BUILT ON. AND HOW WE WILL ACTUALLY START TO REVERSE OR UNDO OR DISRUPT THEM. THE IMPORTANCE OF HAVING DIVERSE GROUPS OF PEOPLE ON YOUR RESEARCH TEAMS AND INVOLVED IN THE PROCESS IS INCREDIBLY IMPORTANT. AND ONE THING THAT I WON'T TALK SO MUCH ABOUT THOUGH TODAY IS HOW DO WE GET THROUGH TO THE YOUNGER GENERATION OF PEOPLE WHO I THINK ARE ACTUALLY MORE POISED AND PREPARED TO DO THIS DISRUPTION THAN SOME OF US HAVE BEEN AND HOW DO WE MAKE SURE WE DON'T OPPRESS OR SUPPRESS THEIR GREAT INNOVATIVE IDEAS BY BEING STUCK IN THESE INCREMENTAL STEPS THAT ARE NOT WORKING. AGAIN I MAY NOT MAKE THAT POINT LATER SO I WANTED TO TAKE A MINUTE TO SAY THAT NOW. THE KEY POINTS I'M GOING TO COME BACK TO AT THE END BUT THEY ALIGN WITH THOSE OBJECTIVES THAT I MENTIONED SO I WON'T TAKE TIME TO GO THROUGH THEM NOW. BUT WE'LL START WITH THE INTRACTABILITY OF HEALTH DISPARITIES. WHAT DOES THAT MEAN? WHY DO I SAY THAT? WHAT IS THE EVIDENCE THERE? SO MANY OF YOU ARE VERY FAMILIAR WITH THE LANDMARK UNEQUAL TREATMENT REPORT THAT IS NOW OVER 20 YEARS OLD. THIS IS A QUOTE FROM BRIAN AS PART OF A GREAT STORY DONE BY STATIN NEWS LAST YEAR. MARKING THE 20th ANNIVERSARY OF THE UNEQUAL TREATMENT REPORT. THERE HASN'T BEEN A LOT OF PROGRESS IN 20 YEARS UNFORTUNATELY. AND BRIAN'S POINT IS THAT WHAT WE'RE STILL SEEING SOME WOULD CALL ME MEDICAL -- APARTHEID. 20 YEARS LATER WE'VE NOT MADE A LOT OF PROGRESS. I'M REALLY THANKFUL TO BE A PART OF THE NEW NATIONAL ACADEMIES COMMITTEE THAT IS REVISITING THIS. SO IF YOU'RE NOT FAMILIAR WITH THIS WORK WHICH IS SPONSORED BY NIH IS FOCUSED ON LOOKING BACK AT WHAT WE'VE LEARNED IN THE LAST 20 YEARS. HOW MUCH PROGRESS WE'VE MADE. WHAT IS STILL LEFT TO BE DONE. AND MOVING FORWARD. SO I'M VERY MUCH LOOKING FORWARD TO BEING A PART OF THAT GROUP. AND HOPEFULLY IMAGINING WAYS THAT WE WILL BE ABLE TO MAKE PROGRESS MOVING FORWARD. SO WHAT DOES THIS LOOK LIKE IN THE LAST 20 YEARS? THIS IS FROM 2021 REFLECTING DATA FROM 2020. LOOKING AT QUALITY MEASURES THERE HAS BEEN VERY LITTLE PROGRESS. SO THEY'VE NARROWED BY 8% IN THE LAST 20 YEARS FOR AMERICAN INDIAN ALASKAN NATIVES. 3% FOR BLACK AFRICAN-AMERICANS. 40% FOR HISPANIC LATINO. 10% FOR NATIVE HAWAIIAN PACIFIC ISLANDERS. VERY LITTLE PROGRESS THERE. LOOKING AT IT DIFFERENTLY WE HAVE WORSE HEALTH OUTCOMES FOR THESE RACIAL AND ETHNIC GROUPS COMPARED TO WHITE. WHITE PEOPLE. 40% FOR AMERICAN INDIANS. 28% FOR ASIAN. 36% FOR HISPANIC LATINO AND 28% FOR NATIVE HAWAIIAN PACIFIC ISLANDERS. NOW I COULD HAVE SHOWN YOU MANY SLIDES TALKING ABOUT THE -- SHOWING YOU EVIDENCE OF THE EXCESS MATERNAL DEATHS IN BLACK WOMEN. THE CONTINUING INCREASES IN DIABETES COMPLICATIONS AMONG AMERICAN INDIANS AND HISPANIC PEOPLE. REALLY THE DATA IS SO IT'S DEPRESSING. BUT THE AMOUNT OF DATA IS ALSO QUITE LARGE THAT IT'S DEPRESSING. SO MANY OF YOU ARE ALSO FAMILIAR WITH HAVE SEEP THIS SLIDE OR A VERSION OF IT -- WHEN WE HAVE IMAGINE WHAT IS DRIVING THE HEALTH DISPARITIES HISTORICALLY WE HAVE BLAMED PEOPLE'S CHOICES. PERSONAL CHOICES OR LACK OF HEALTH CARE ACCESS. BUT THE REALITY IS THAT THERE ARE UPSTREAM FACTORS SOCIAL AND ECONOMIC AND POLITICAL FACTORS THAT CONTRIBUTE TO THESE DISPARITIES THAT WE ARE OFTEN NOT ADDRESSING AND THIS IS A PAIN POINT I WOULD SAY IN MEDICINE IN SCIENCE. NOW HOW DO WE ACTUALLY ADDRESS THESE FACTORS THAT ARE UPSTREAM THAT ARE OUTSIDE OF WHAT WE MIGHT THINK OF TRADITIONALLY AS OUR CONTROL. BUT CERTAINLY RECOGN -- RECOGNIE POLICIES WHERE COMMUNITY LIVES AND WHAT ACCESS THEY HAVE. THE REDLINING THAT OCCURRED DECADES AGO. YOU CAN MAP AT LEAST LOCALLY SOME OF THAT TO WHERE WE HAD EXCESS COVID-19 EARLY ON IN THE PANDEMIC IN NASHVILLE. THESE EXPERIENCES OPPORTUNITIES ARE REALLY UNDER GIRDING AND DRIVING THESE DISPARITIES THAT WE CONTINUE TO SEE. BUT UNTIL RECENTLY WE'VE NOT SPENT A LOT OF TIME TRYING TO ADDRESS THEM OR INCLUDE THEM AS FACTORS THAT WE CONSIDER IN OUR RESEARCH. SO IT'S WONDERFUL TO SEE SOME OF THE SHIFT RECENTLY. AND CERTAINLY COVID-19 WAS A GREAT -- NOT GREAT, I DON'T WANT TO SAY ANYTHING WAS GREAT ABOUT COVID-19. BUT COVID-19 REALLY ILLUSTRATED THE INEQUITIES AND PUT THE SPOTLIGHT ON SOME OF THESE INEQUITIES THAT WE'VE BEEN SEEING IN MANY OTHER CONDITIONS FOR A LONG TIME. AT VANDERBILT WE HAD THE OPPORTUNITY TO PUT TOGETHER A COVID-19 HEALTH EQUITY WORK STREAM AS PART OF OUR COMMAND CENTER AND I'M PROUD OF THE WORK THAT WE WERE ABLE TO DO EARLY ON AND STARTING TO DISAGGREGATE DATA BY RACE, ETHNICITY AND LANGUAGE. YOU CAN SEE THAT HERE. I WANT T -- TO POINT OUT THIS OE ROW HERE. THE UNKNOWN RACE. WE'LL TALK LATER BY DISAGGREGATING DATA AND THE IMPORTANCE OF DATA. SOMETIMES THERE ARE POPULATIONS IN GROUPS THAT WE ACTUALLY ERASE SO WE TRY TO MAKE SURE THAT WE'RE NOT LEAVING PEOPLE OUT OF TABLES AND THIS REFLECTS THAT. SO AS WE ARE STARTING TO DO COVID-19 TESTING WE HAD AN INFLUX OF INDIVIDUALS INTO OUR HEALTH SYSTEM WHO HAD NOT BEEN SEEN BEFORE SO SOME OF THEM MAY NOT HAVE HAD A RACE OR ETHNICITY RECORDED BUT OTHERS WERE NEW. WE DIDN'T HAVE DATA AND WERE NOT COLLECTING IT FAST ENOUGH OR SOMETIMES THEY DIDN'T WANT TO SHARE THAT INFORMATION. BUT WITHIN THE GROUPS HERE INDIVIDUALS FOR WHOM WE DIDN'T KNOW THEIR RACE OR ETHNICITY HAD THE HIGHEST PERCENT POSITIVE THERE. THAT IS REALLY IMPORTANT AS WE BEGIN TO AGAIN CONSIDER WHO IS AT RISK FOR DISPARITIES AND HOW ARE WE CONNECTING AND WHAT ADDITIONAL INFORMATION DO WE NEED. WE SHOULD NOT HAVE BEEN SURPRISED THAT THERE WERE INEQUITIES RELATED TO COVID-19. THIS IS A SLIDE FROM 2008. SO, IT'S NOT ABOUT COVID-19. IT'S ABOUT INFLUENZA ACTUALLY. THIS FRAMEWORK OF THE DIFFERENCES IN SOCIAL POSITION. WHAT WE KNEW ABOUT INFECTIOUS DISEASES WHAT WE'VE KNOWN FOR MANY DECADES SHOULD NOT BE A SURPRISE AS FAR AS THESE INEQUITIES. SO LOOKING AT THE DIFFERENCES IN HOW PEOPLE ARE EXPOSED TO THE VIRUS. THE UNDERLYING SUSCEPTIBILITIES AND ACCESS TO CARE ALL OF THESE ARE CONTRIBUTING TO THE INEQUITIES. LOOKING AT SOME DATA FROM -- ABOUT INFECTIOUS DISEASES IN THE PAST. WE SHOULD NOT HAVE BEEN SURPRISED THAT PEOPLE LIVING IN HOMES THAT HAD HIGHER HOUSEHOLD DENSITY. PEOPLE WHO HAD TO TAKE THE BUS TO WORK. INDIVIDUALS WHO WERE WORKING IN GROCERY STORES. WHO COULD NOT WORK REMOTELY. WE SHOULD NOT HAVE BEEN SURPRISED. AND ALSO THAT THE UNDERLYING STRUCTURES THAT MAKE LIFE CHALLENGING THAT PROVIDE -- THAT REQUIRE PEOPLE TO LIVE AND EXIST IN A RACIST AND DISCRIMINATORY ENVIRONMENT, THOSE THINGS HAVE A BIOLOGICAL EFFECT. SO CHANGES IN INFLAMMATION AND IMMUNE SYSTEM SHOULD NOT HAVE SURPRISED US THAT WE WERE SEEING THESE INEQUITIES BECAUSE THESE ARE THE SAME UNDERLYING ISSUES THAT INCREASE DISPARITIES FOR OTHER CONDITIONS. THE FOCUS ON RACISM AND THINKING ABOUT HOW PEOPLE ESPECIALLY -- I'M NOT SAYING IT'S JUST BECAUSE IT'S BLACK HISTORY MONTH BUT I'M EMPHASIZING IT -- INDIVIDUALS WHO IDENTIFY AS BLACK OR AFRICAN-AMERICAN IN THE UNITED STATES ARE THE MOST -- EXPERIENCE RACIAL DISCRIMINATION THE MOST. THEY EXPERIENCE RACISM THE MOST. WE'VE SEEN IN THE LAST SEVERAL YEARS INCREASES IN AMONG INDIVIDUALS OF ASIAN DECENT, ASIAN AMERICANS EXPERIENCING RACISM BUT BY FAR THE LARGEST GROUP THE GROUP THAT HAS THE LARGEST NUMBER OF OR THE MOST EXPERIENCES WITH RACISM IN OUR COUNTRY ARE FROM PEOPLE WHO ARE BLACK BUT THEY ARE NOT THE ONLY ONES. THINKING ABOUT RACISM AND THE FACT THAT WE HAVE A SYSTEM OF HIERARCHY THAT ACTUALLY HAS BEEN EMBEDDED INTO MANY SYSTEMS, THINKING ABOUT HOW REDLINING IS EMBEDDED. HOW PUBLIC SCHOOLS ARE FUNDED BASED ON PROPERTY TAXES. ALL OF THOSE THINGS HAVE BEEN EMBEDDED INTO OUR SYSTEMS AND STRUCTURES AND CONTINUE TO HAVE AN UNJUST UNFAIR OUTCOMES FOR PEOPLE OF COLOR AND AGAIN I WOULD EMPHASIZE FROM THIS DEFINITION THAT IS WHETHER IT'S INTENDED OR NOT. ONE OF THE BIGGEST CHALLENGES I SEE AMONG MY COLLEAGUES IS THE IDEA THAT THEY WANT TO BE NEUTRAL AND NOT ACKNOWLEDGE RACE OR RACISM IN THE SYSTEM. SO, LIKE THIS IMAGE HERE BECAUSE IT REINFORCES THAT IF YOU DON'T SEE COLOR THEN YOU DON'T SEE ME. IGNORING RACE OR DIFFERENCES DOESN'T MAKE THEM GO AWAY. IT DOESN'T ERASE THE UNDERLYING INFRASTRUCTURE AND THE SYSTEMS THAT CONTINUE TO OPPRESS PEOPLE. AND SO AGAIN THINKING THROUGH THAT AS NOT WHAT IS VISIBLE BUT WHAT IS INVISIBLE. THE SECOND CHALLENGE THAT I SEE IS THAT WE SEE DIFFERENCES IN OUTCOMES BASED ON RACE AND WE CONTINUE TO CONNECT THAT SOMEHOW TO SOME INNATE BIOLOGICAL DIFFERENCES BUT WE'RE OVERLOOKING THE FACT THAT RACISM DISCRIMINATION, STRESS OF ANY KIND HAS BIOLOGICAL AND PSYCHOLOGICAL CONSEQUENCES. SO LIVING IN SYSTEMS THAT ARE OPPRESSIVE HAVING EXPERIENCES WITH DISCRIMINATION, THOSE IMPACT YOUR BODY. CHANGES AGAIN IN YOUR IMMUNE SYSTEM. INCREASING CORTISOL LEVELS. CHANGES IN YOUR BLOOD PRESSURE. ALL OF THOSE THINGS HAPPEN TO YOUR BODY BECAUSE OF YOUR EXPERIENCES WITH RACISM AND DISCRIMINATION. AND SO, I'VE BEEN SEEING AND FINDING MYSELF PUTTING MORE OF THESE IMAGES IN FRONT OF MY COLLEAGUES TO SHOW THEM AND REMIND THEM AND THIS IS ONE THAT RUTH CARLOS LED AND HAPPY TO HAVE HAD THE OPPORTUNITY TO WORK WITH HER ON THIS IN THINKING ABOUT WHAT STRUCTURAL RACISM LOOKS LIKE IN THE SETTING OF BREAST CANCER AND OUTCOMES. BUT REALLY I THINK WE NEED TO INCREASE THE VISIBILITY OF THIS SO THAT WE BEGIN TO DEBUT ALTHOUGHGIZE * RACE. IT'S SOMETHING THAT WE'VE SEND IN SCIENCE AND WE HAVE NOT PUSHED BACK ENOUGH THAT THESE DIFFERENCES BETWEEN RACIAL AND ETHNIC GROUPS ARE NOT DUE TO INNATE BIOLOGICAL DIFFERENCES. I WOULD SAY WE HAVE TO ACKNOWLEDGE OUR RESPONSIBILITY OUR ROLES AND OUR COLLEAGUE'S ROLES HISTORICALLY IN PERPETUATING AND MAINTAINING THESE DISPARITIES. SO I WOULD JUST CONTINUE AND I'VE SAID THIS A NUMBER OF TIMES BEFORE TO PUSH PEOPLE TO READ HARRIET WASHINGTON'S BOOK IF YOU HAVE NOT BEFORE. LOOKING AT REALLY THE HISTORY O- OF EXPERIMENTATION. FOR SOME OF THESE PROJECTS THE WAY THAT THEY WERE DONE REALLY UNFORTUNATELY -- THE CIRCUMSTANCES ALL OF THESE ACTIVITIES THAT HAPPENED REALLY HARD TO READ. BUT IT'S REQUIRED. WE SHOULDN'T JUST ALLOW OURSELVES TO BE COMFORTABLE WITH THIS SPACE BECAUSE IF WE DON'T ACKNOWLEDGE THE PAST THEN WE'RE GOING TO CONTINUE TO MAKE THESE MISTAKES AND NOT TAKE RESPONSIBILITY FOR SOME OF THE ISSUES THERE. SO MS. WASHINGTON'S WORK IS LOOKING BACK AND THAT WAS PUBLISHED IN 2006. BUT THESE ARE CONTINUING TO HAPPEN SO WE HAVE SEEN DURING THE PANDEMIC DIFFERENCES IN OXYGEN SUPPLEMENT TAKES BY RACE AND ETHNICITY. ISSUES WITH PULSE OXIMITRY NOT BEING RELIABLE OR ACCURATE FOR PEOPLE WITH DARKER SKIN. SOME OF THE ALGORITHMS -- AND SO THESE ARE NOT JUST HISTORICAL ISSUES. THESE ARE NOT DECADES AND CENTURIES AGO. ISSUES THAT WE'VE BEEN RESPONSIBLE FOR DEVELOPING TOOLS AND INSTRUMENTS THAT LEAD TO BIASES IN OUTCOMES. SO, THAT IS AGAIN PART UNSEEN AND UNINTENTIONAL CONSEQUENCES OF NOT HAVING TEAMS NOT BEING PREPARED NOT THINKING IN ADVANCE ABOUT WHAT INEQUITIES YOU MIGHT BE CREATING WHEN YOU'RE DOING YOUR RESEARCH. OF COURSE, THE SPACE OF MEDICINE, GENETICS AND GENOMICS AND THE HISTORY THAT -- OF WHITE SUPREMACY THAT IS EMBEDDED AGAIN PEOPLE HAVE NOT ACKNOWLEDGED SO MUCH IN THE PAST BUT MORE RECENTLY ARE STARTING TO TAKE SOME OWNERSHIP IN THINKING THROUGH HOW THEY MIGHT RECTIFY THIS. I THINK WE NEED DIFFERENT STANDARDS OF DOING THIS AND I HOPE TO GET TO THAT LATER. THE IDEA THAT WE AGAIN AS SCIENTISTS AND PHYSICIANS WE WERE NOT JUST INNOCENT BYSTANDERS. WE WERE INVOLVED IN THESE THE PSEUDO SCIENCE AND PERPETUATING THE DIFFERENCES IN RACIAL GROUPS AND CATEGORIES. SOME OF THE MOST STRIKING THINGS TO ME ABOUT TRYING TO CONNECT IQ TO HEAD SIZE AND SKIN COLOR PEOPLE WHO WERE ENSLAVED AFRICANS BROUGHT TO THIS COUNTRY AND WERE NOT ALLOWED TO SPEAK THEIR OWN LANGUAGE. WEREN'T ALLOWED TO BE EDUCATED. STRIPPED OF THEIR CULTURE. AND THEN EXPECTED SOMEHOW TO PASS IQ TESTS OR PERFORM IN SIMILAR WAYS. AND THAT BEING USED IS ADJUST INDICATION FOR DIFFERENCES IN HEALTH OUTCOMES. REALLY GOOD TO SEE -- ORGANIZATIONS AND INSTITUTIONS PUBLISHERS START TO TAKE RESPONSIBILITY FOR THEIR ROLE AND THEIR CONTRIBUTIONS AND WOULD LOVE TO CONTINUE TO SEE MORE OF THIS. THIS IS FROM NATURE. AND AGAIN WE'RE STARTING TO SEE MORE ACKNOWLEDGMENT OF HOW RACISM IS LINGERING BUT NOT ENOUGH ACCOUNTABILITY OR ACCEPTANCE FOR -- OR RESPONSIBILITY FOR CONTINUING THESE MYTHS AND THESE UNTRUTHS OR EVEN THINKING ABOUT HOW THERE MAY BE SOME REPARATIONS THERE. OF COURSE, HEALTH CARE IN GENERAL WAS SEGREGATED WELL INTO THE 1950s AND '60s IN THE UNITED STATES AND BETWEEN THIS IS ONE OF THOSE WELL THAT WAS 60 YEARS AGO BUT THE LEGACY OF THAT SEGREGATION CONTINUES SO THE WORSE OUTCOMES FOR FAMILIES OF COLOR DIDN'T GO AWAY WHEN HOSPITAL WARDS BECAME INTEGRATED. THOSE LONG-STANDING ISSUES WERE HAVE BEEN BUILT INTO THE SYSTEMS. THE LACK OF ACCESS, THE BIASES THAT WE HAVE AND HOW WE PROVIDE CARE. ALL OF THOSE THINGS ARE BAKED INTO THE SYSTEM AND WE STILL HAVEN'T DISRUPTED OUR SYSTEMS AND PUT IN PROCESSES TO ADDRESS THESE. MYTHS ABOUT RACIAL DIFFERENCES CONTINUE. MANY OF YOU ARE AWARE OF OR KNOW OF THE CHANGES IN USE OF RACE BASED EGFR -- THAT HAS BEEN A HOT TOPIC OVER THE LAST SEVERAL YEARS. AND FORTUNATELY THE RENAL AND THE KIDNEY COMMUNITY HAS MADE CHANGES AND MANY HOSPITALS HAVE STOPPED USING THAT RACE BASED CALCULATION OF KIDNEY FUNCTION. THEY ARE NOW NEW STRATEGIES BEING PUT INTO PLACE TO MAKE SURE THAT BLACK PEOPLE WHO WERE NOT CONSIDERED FOR TRANSPLANT GET PRIORITIZED. SO SOME GREAT EXAMPLES OF HOW TO -- ACTUALLY HAVE IN COMMUNITY REPARATIONS AROUND THESE ISSUES THAT HAVE HAPPENED IN THE PAST. STILL LOTS MORE WORK TO BE DONE. WE SEE INSTRUMENTS WHERE CUT OFF SCORES -- NORMAL VALUES WERE CHANGED BASED ON RACE. MANY OF YOU HAVE HEARD FROM SAMUEL CARTWRIGHT WHO REPORTED THAT BLACK PEOPLE HAD 20% LOWER LUNG CAPACITY AND ACTUALLY USED THAT AS A REASON TO KEEP THEM ENSLAVED. AND JUSTIFIED THAT BY SAYING THAT HAVING THEM WORK PHYSICALLY WORK HARDER WAS BETTER FOR THEM BECAUSE IT WOULD INCREASE THEIR OXYGENATION AND * AND KEEP THEM FROM WANTING TO BE FREE BECAUSE THAT WAS BARBARIC THAT THEY WANTED TO BE FREE. BUT MANY HOSPITALS AND INSTITUTIONS CONTINUE TO USE THESE DIFFERENT LUNG NORMAL LUNG VALUES FOR PEOPLE WHO ARE BLACK. AND THEN OF COURSE MANY EXAMPLES UNFORTUNATELY OF PHYSICIANS AND SCIENTISTS WHO EXPERIMENTED ON BLACK PEOPLE. THIS IS MIRIAM SIMS WHO WAS WELL-KNOWN FOR DEVELOPING THE SPECK LUMP * AND DOING SOME EARLY GYNECOLOGICAL PROJECTS DID THAT ON ENSLAVED WOMEN WITHOUT ANESTHESIA AND PERPETUATING THESE MYTHS ABOUT LACK OF -- DIFFERENT TOLERANCES IN PAIN AND THAT PEOPLE WHO ARE BLACK DON'T EXPERIENCE PAIN IN THE SAME WAY. ALL OF THAT CONTINUES AND THERE IS CERTAINLY DATA TO SUPPORT THAT PHYSICIANS ARE CONTINUING TO PRESCRIBE PAIN MEDICINE DIFFERENTLY FOR BLACK PEOPLE AND OTHER PEOPLE OF COLOR. SO WHERE DO WE GO FROM HERE? HOW CAN WE MOVE FORWARD? I'M GOING TO SHARE A FEW DIFFERENT EXAMPLES OF OPPORTUNITIES TO EMBED EQUITY IN RESEARCH. IT WAS MENTIONED THAT I HAVE SPENT TIME OFF COMMUNITY ENGAGEMENT. THIS IS AN OVERVIEW OF THE DIFFERENT WAYS THAT I, OUR TEAM HERE THINKS ABOUT ENGAGEMENT ACROSS A CONTINUUM. AND I WOULD SAY THIS IS COMMUNITY ENGAGED RESEARCH. YOU'RE STARTING WITH COMMUNITY AND DEVELOPING THAT INITIAL QUESTION TOGETHER. BUT THIS IS MORE BROADLY COMMUNITY ENGAGEMENT AND RESEARCH AND THE DIFFERENT WAYS TO DO THAT. I'M OFTEN ASKED HOW -- WHAT IS THE BEST WAY? BUT WE HAVE MANY EXAMPLES WHERE WE ACTUALLY HAVE TO ENGAGED COMMUNITIES AT ALL OF THESE DIFFERENT LEVELS. ONE IS NOT BETTER THAN THE OTHER. THE MOST IMPORTANT MARKER OF SUCCESS AND COMMUNITY ENGAGEMENT IS THAT THERE IS EVIDENCE OF CHANGE. SO IF YOU HAVE ENGAGED THE COMMUNITY OR YOU THINK YOU'VE ENGAGED A COMMUNITY AND YOU CANNOT POINT TO SOMETHING THAT CHANGED IN YOUR RESEARCH AFTER ENGAGING THE COMMUNITY THEN YOU HAVE NOT DONE COMMUNITY ENGAGEMENT. IT'S ALSO IMPORTANT THAT THE COMMUNITY WHO YOU HAVE TO ENGAGED -- ALSO SEES THAT AS A CHANGE. IF YOU HAVE A GREAT RESEARCH IDEA AND PROJECT AND YOU GO AND YOU PRESENT IT TO THE COMMUNITY AND THEY NOD THEIR HEADS AND YOU MOVE FORWARD AND NOTHING HAPPENED AFTER YOU ENGAGED THEM -- THAT IS NOT COMMUNITY ENGAGEMENT. YOU JUST HAVE HAD LUNCH WITH THEM. VERY IMPORTANT ALSO TO RECOGNIZE THAT MANY OF US WHO THINK WE'RE DOING COMMUNITY ENGAGEMENT ARE NOT DOING IT WELL. SO THIS IS FROM A STUDY THAT WE DID AS PART OF THE CONSORTIUM A NUMBER OF YEARS AGO WHERE PART OR ALL OF THESE WERE QUESTIONS DIRECTLY TO COMMUNITY MEMBERS COMMUNITY PARTNERS WHO WERE ACTIVELY INVOLVED IN OR HAD BEEN INVOLVED IN RESEARCH. THEY WERE WILLING TO WORK WITH US AS RESEARCHERS AND ONE OF THE QUESTIONS WE ASKED IS HOW PREPARED DO YOU THINK RESEARCHERS ARE TO DO RESEARCH IN AND/OR WITH YOUR COMMUNITY? AND YOU CAN SEE ABOUT 25% OF THEM THOUGHT THAT RESEARCHERS WERE QUITE PREPARED OR VERY PREPARED. 38% THOUGHT NOT PREPARED OR ONLY SLIGHTLY PREPARED. AND THEN MODERATELY PREPARED IN THE MIDDLE HERE. WE'RE OUT HERE THINKING AND PLANNING AND OFTEN AINGING -- APPROACHING THIS WORK AS IF WE HAVE TO EDUCATE THE COMMUNITY WHEN WE'RE NOT PREPARED TO DO THIS WORK OURSELVES. * SO THIS REQUIRES SOME SHIFTING OF HOW WE DO WORK. BUT PUSHING THAT WE DO NEED TO DO MORE COMMUNITY ENGAGEMENT. BUT WE NEED TO MAKE SURE THAT WE'RE PREPARED TO DO IT AND NOT PRESUMING THAT IT'S -- INHERENT TO US. ANOTHER IMPORTANT PIECE OF EMBEDDING EQUITY IS GETTING BACK TO THE DATA ABOUT COLLECTING DATA. ARE WE INCLUDING THE RIGHT DATA? WHAT ARE WE ASKING IN OFTEN WHAT WE NEED TO ADDRESS DISPARITIES MEANS THAT WE HAVE TO COLLECT SOCIAL DETERMINANTS OF HEALTH. THIS IS ONE OF THE SLIDES FROM THE EARLIER ALL OF US RESEARCH PROGRAM AND TALKING ABOUT ALL OF THE DIFFERENT DATA WE'RE GOING TO USE. ABOUT POVERTY -- BUT WHAT IS IMPORTANT TO UNDERSTAND HEALTH AND COMMUNITIES. WHERE IS THE INFORMATION ABOUT DISCRIMINATION AND RACISM. THAT WOULD HELP US UNDERSTAND WHERE FOOD DESERTS ARE. WHERE FOOD SWAMPS ARE. THE HIGH CONCENTRATIONS OF FAST-FOOD RESTAURANTS AND LIQUOR STORES. WHERE IS THAT INFORMATION ABOUT POLICE RESPONSE TIME IN COMMUNITIES. MUCH OF THAT IS IMPORTANT FOR UNDERSTANDING THE CONTEXT OF PEOPLE'S LIVES AND THEIR HEALTH. SO RELATED TO DATA -- WE HAVE A BIG PUSH FOR COLLECTING DATA ON RACE, ETHNICITY AND LANGUAGE. BUT RACE IS ONE OF THE MOST IMPRECISE VARIABLES THAT WE COLLECT IN RESEARCH. THIS IS AN EXAMPLE. I AS A BLACK WOMAN CAN HAVE ONE BLACK GREAT GRANDPARENT AND BE CONSIDERED BLACK IN THE UNITED STATES. OR I CAN HAVE ALL 8 OF MY GREAT GRANDPARENTS BLACK AND BE CONSIDERED BLACK. SO THE FACT THAT WE WOULD USE THIS CONSTRUCT OF RACE AS SOMEHOW BEING A VALID WAY OF PUTTING PEOPLE INTO GROUPINGS DOESN'T MAKE ESSENTIALS AT ALL FROM A SCIENTIFIC STANDPOINT. AND SO CERTAINLY MANY PEOPLE IT'S BECOME COMMON NATURE TO HEAR PEOPLE TALK ABOUT RACE NOW AS A SOCIAL CONSTRUCT WI BUT WEE STILL USING IT IN SCIENCE AS IF IT'S A BIOLOGICAL ONE. THAT IS SOMETHING THAT WE HAVE TO BE CONSCIOUS OF. THIS IS WORK THAT KIERA AITKINS WHO WAS DOING HER GRADUATE STUDIES AS A GRADUATE STUDENT. SHE WAS WORKING WITH LEA DAVIS AND NANCY COX WHO ARE IN GENETICS AT VANDERBILT. REALLY AMAZING WORK LOOKING AT THIS -- WE'RE OFTEN CONFLATING RACE AND ANCESTRY BUT IN THIS STUDY WHICH -- BIOVU OUR DATABASE WHICH INCLUDES GENOMICS DATA CONNECTED TO THE ELECTRONIC HEALTH RECORDS OF VANDERBILT. WHEN YOU LOOK AT PEOPLE WHO SELF-IDENTIFIED AS BLACK OR AFRICAN-AMERICAN AND WHEN YOU CONTROL FOR AFTER ANCESTRY -- * THE CONDITIONS THAT ARE ASSOCIATED WITH IDENTIFYING AS BLACK OR AFRICAN-AMERICAN WERE HYPERTENSION AND FATIGUE. WHEN YOU LOOK AT AFRICAN ANCESTRY AND CONTROL FOR BLACK RACE THEN THE CONDITIONS ASSOCIATED THAT -- WITH AFRICAN ANCESTRY FOR KIDNEY DISEASE AND SICKLE-CELL DISEASE. THERE ARE A FEW OTHER OUTCOMES IN THAT MANUSCRIPT AND IT IS BEING REVISED NOW BUT I THINK ILLUSTRATING THIS DIFFERENCE IN PEOPLE WHO ARE RACIALIZED AS BLACK AND IDENTIFIED THAT WAY AND HAVE EXPERIENCES IN SOCIETY THAT REFLECT THAT ARE EXPERIENCING THINGS LIKE HYPER TENSION AND FATIGUE. THEY ARE WELL-KNOWN GENES FOR KIDNEY DISEASE. SO THINKING ABOUT HOW WE MOVE FORWARD IN WAYS THAT UNDERSTAND THE NUANCES BETWEEN RACE AND ANCESTRY ARE IMPORTANT AND NOT ONE -- WE CANNOT MOVE TO A PLACE WHERE WE SAY THAT RACE IS NOT IMPORTANT TO UNDERSTAND. WE JUST NEED TO RECOGNIZE THAT IF RACE IF WE ACCEPT THAT RACE IS A SOCIAL CONSTRUCT THEN WHAT IS IT A PROXY FOR? IS IT FOR RACISM? A PROXY FOR MARGINALIZED AND HAVING TO LIVE IN DISINVESTED COMMUNITIES. WHAT IS IT A PROXY FOR IS WHAT WE HAVE TO UNDERSTAND. WE CANNOT THINK ABOUT OR INCLUDE RACE UNLESS WE KNOW WHAT OTHER MEASURES WE SHOULD BE INCLUDING AND I DON'T KNOW THAT WE'LL KNOW ALL OF THE THINGS THAT NEED TO BE INCLUDED THERE. ONE APPROACH THAT I'M PROUD THAT OUR TEAM WAS ABLE TO GET ON THE TABLE -- BACK IN 2016 WE HAD A NUMBER OF CONVERSATIONS BACK AND FOR THE WITH OUR COLLEAGUES AT NIH ABOUT USING A SINGLE COMBINED QUESTION FOR RACE AND ETHNICITY. WE HAD SOME PUSH BACK. PEOPLE WANT TO USE THE TWO PART QUESTION WHERE HISPANIC OR LATINO ETHNICITY WAS ASKED DIFFERENTLY, SEPARATELY. AND WE WERE ABLE TO DO THEM SO NOW MORE THAN 500,000 PEOPLE HAVE ANSWERED THE QUESTION THIS WAY AND ACTUALLY BRANCHES WHERE YOU CAN IDENTIFY ETHNICITY WITHIN THESE GROUPS. YOU CAN SELECT ALL THAT APPLY. MORE THAN ONE. 7 YOU CAN SAY NONE OF THESE FULLY DESCRIBE ME AND IT ALSO INCLUDES MIDDLE EASTERN AND NORTH AFRICAN. IN THE LAST COUPLE OF WEEKS THE CHIEF STATISTICIAN HAS ANNOUNCED PLANS TO CHANGE THE OMB CATEGORY SO, THAT IS CURRENTLY OPEN FOR COMMENT. BUT SOME OF THE CHANGES INCLUDE HAVING A SINGLE QUESTION AND ALSO ADDING MIDDLE EASTERN AND NORTH AFRICAN. SO I'M PERMANENTLY GLAD TO SEE THIS. THIS IS HOW MY TEAM HAS COLLECTED THIS DATA FOR AT LEAST 8 OR 9 YEARS NOW. ANOTHER STRATEGY THAT WE'VE BEEN USING AND TO TRY TO ILLUSTRATE SOME OF THE DIFFERENT WAYS THAT ADVERSITY DISCRIMINATION AND RACISM ACTUALLY IMPACT THE BODIES. I MENTIONED THAT EARLIER. INCREASE IN -- AND CHANGES IN INFLAMMATION. WE HAVE A PROJECT THAT WE'RE DOING NOW LOOKING AT DATA THAT WE CAN CAPTURE IN THE ELECTRONIC HEALTH RECORDS. THAT IS PART OF THE CHALLENGE. WHAT IS AVAILABLE IN THE HEALTH RECORDS? THESE ARE NOT IDEAL. I WOULD LOVE TO KNOW HOW ARE PEOPLE EXPERIENCING RACISM AND DISCRIMINATION AND OTHER THINGS. BUT LOOKING AT -- EPIGENETICS. WE HAVE A SAMPLE OF ABOUT 900 PEOPLE. ONE OF THE EARLY SIGNALS THAT WE'RE SEEING THAT IS CONNECTING IN THIS DEPRIVATION AND ADVERSE TEE IS A SIGNAL IN BETA CELLS. OBVIOUSLY FOR THOSE OF YOU WHO KNOW WHAT THAT MEANS -- THINKING ABOUT THESE FACTORS AND LINKING IT TO DIABETES AND GLUCOSE INTOLERANCE. THESE ARE WELL-KNOWN DISPARITIES AMONG MINORITIZED GROUPS IN THIS AREA. SO BEING ABLE TO LINK THAT IS SOMETHING THAT WE'RE LOOKING TO DO. WE HOPE TO ACTUALLY CREATE AN ANIMAL MODEL THAT WOULD EMBED THESE EPIGENETIC CHANGES SO THAT WE UNDERSTAND REALLY HOW THESE FACTORS ARE CHANGING BIOLOGY. ANAND HOPEFULLY WE CAN PREVENT THEM. THESE ARE EPIGENETIC NOT GENETIC CHANGES THERE. ANOTHER THING THAT WE'VE BEEN FOCUSED ON IS LOOKING AT TRUST AND TRUSTWORTHINESS. WE RECENTLY CREATED AND VALIDATED A NEW INSTRUMENT TO MEASURE THIS. THERE ARE MANY REASONS THIS IS IMPORTANT. CERTAINLY ENGAGING PEOPLE IN RESEARCH AS VOLUNTEERS BUT ALSO INCREASING ADOPTION OF RESULTS IN RESEARCH. ENGAGING THEM AS PARTNERS IN THE RESEARCH. THESE ARE THINGS THAT ARE IMPORTANT. SO AS PART OF THE WORK WHICH IS FUNDED AS PART OF OUR RECRUITMENT AND INNOVATION CENTER. THE WORK THAT WE DID WE FIRST WANTED TO CAPTURE CONTENT OR DID I MENTIONS AND CONCEPTS OF RESEARCH THAT WE THINK ARE NOT REALLY CAPTURED WELL IN SOME OF THE EXISTING TRUST MEASURES. WHAT YOU SEE IN RED ARE ACTUALLY CONCEPTS DIMENSIONS OF TRUST THAT WERE MORE PROMINENT. SO THE IDEA OF COMMUNITY BENEFIT. HOW IS THE RESEARCH BENEFITING MY COMMUNITY AND NOT JUST ME? TENDS TO BE MORE IMPORTANT AMONG PEOPLE WHO HAVE BEEN MARGINALIZED AND OFTEN OUR IRBs ARE SET UP TO PROTECT INDIVIDUALS. SO, THAT IS SOMETHING THAT IS DIFFERENT. PRIVACY AND PROFIT INCENTIVES. HISTORICAL ABUSE. TRUSTWORTHINESS. THESE ARE ALL DIMENSION THAT'S CAME OUT THAT ARE NOT WELL DESCRIBED IN THE LITERATURE. THE IDEA OF SECRECY WAS ONE THAT WE SPENT A LOT OF TIME THINKING ABOUT TALKING ABOUT. I GOT TO WORK WITH DEAR CAN GRIFFITH WHO'S AT GEORGETOWN. * THE IDEA THAT PEOPLE DON'T BELIEVE US WHEN WE SAY -- WHAT WE SAY ABOUT RESEARCH BECAUSE HISTORICALLY WE HAVE LIED TO THEM. RESEARCHERS AND SCIENTISTS. PEOPLE IN POWER. IF YOU ARE BLACK AND YOUR FAMILY WAS ENSLAVED THE IDEA THAT YOU ACTUALLY WOULD TRUST SYSTEMS IS ALMOST THE OPPOSITE. LIKE IF YOU'RE TOO TRUSTING PEOPLE ARE WORRIED. WHY ARE YOU SO TRUSTING? SHOULDN'T YOU BE CONCERNED ABOUT THAT? SO HERE I THINK WE SAW THE SCALE HAS TWO COMPONENTS. A TRUST AND DISTRUST SUB SCALE. THOSE DIMENSIONS THAT WE IDENTIFIED WITHIN THE STUDY AND AFRICAN-AMERICANS AND HISPANIC LATINO PEOPLE ARE SHOWN HERE. NOT SURPRISING. ONE THING THAT WE ALSO SAW WAS THE SPECIFIC ITEMS THAT WERE MOST CONCERNING OR WHERE THERE WERE DIFFERENCES WERE NOT THE SAME FOR BLACK AND HISPANIC LATINO PEOPLE. THAT IS I THINK REALLY IMPORTANT TO UNDERSTAND AND RECOGNIZE. SOMETIMES WE LUMP ALL GROUPS TOGETHER BUT THESE GROUPS'S EXPERIENCES ARE DIFFERENT. CULTURES ARE DIFFERENT. SO THE ONLY QUESTION THAT BOTH GROUPS ACTUALLY HAD DIFFERENCES WHEN COMPARED TO WHITE WHEN YOU SAY MEDICAL RESEARCHERS ARE SECRETLY DESIGNED TO GIVE DISEASES TO MINORITY GROUPS. THERE ARE DIFFERENCES IN WHICH GROUPS HAD STATISTICALLY SIGNIFICANT DIFFERENCES. ANOTHER EXAMPLE I'LL GIVE IS THINKING ABOUT HOW WE ENSURE THAT WE'RE DISAGGREGATING DATA. THIS IS A STUDY LOOKING ATOM LLOYD -- AT -- AMYLOID PET. YOU KNOW THAT AMYLOID IS * AMYLOID -- AND LOOKING AT OFFERING AMYLOID PET IMAGING OFFERS ALZHEIMER'S DISEASE TO BE DIAGNOSED -- ACTUALLY LOOKING AT AUTOPSIES -- HAVING BIOMARKERS THAT YOU CAN USE TO DIAGNOSE THE DISEASE IS IMPORTANT BUT ALSO FOR THOSE OF YOU WHO MAY BE FOLLOWING RECENT TREATMENT OPTIONS FOR ALZHEIMER'S DISEASE HAVE FOCUSED ON AMYLOID AND LOTS OF CONTROVERSY THERE BUT POTENTIALLY YOU WOULD NEED TO HAVE EVIDENCE OF AMYLOID IN ORDER TO QUALIFY. HERE IN ALZHEIMER'S DISEASE PEOPLE WHO ARE BLACK AND HISPANIC HAVE HIGHER RATES OF CLINICAL ALZHEIMER'S DISEASE. SO THERE IS A DIFFERENT BURDEN OF DISEASE. KNOWN DISPARITIES THERE. THE INITIAL STUDY WAS PUBLISHED IN JAMA AND THERE WAS NO DISAGGREGATION OF DATA BY RACE. SO, I'VE GOTTEN TO WORK WITH THE LEADERS OF THE STUDY WHO ASKED ME AND DR. PEGGY ANDERSON TO COME ON-BOARD AND RECRUIT FOR A SECOND STUDY THAT WOULD FOCUS ON BLACK AND HISPANIC PEOPLE. WHAT DID YOU LEARN ABOUT THIS GROUP BEFORE? TURNS OUT THAT ASIAN AND BLACK AND HISPANIC PEOPLE IN THE STUDY HAVE LOWER ODDS OF BEING AMYLOID PET POSITIVE. SO THAT HAS SUBSTANTIAL INDICATIONS FOR TREATMENT IF INDIVIDUALS WHO HAVE A HIGHER BURDEN OF DISEASE CLINICALLY BUT ARE LESS LIKELY TO BE AMYLOID POSITIVE THAN AGAIN THESE TREATMENTS DOWN STREAM LONG-TERM TREATMENTS THEY WOULD NOT BE ELIGIBLE FOR. SO IN THE LAST FEW MINUTES THINKING ABOUT POLICY CHANGES. WE HAVE A LOT OF WORK TO DO IN TERMS OF CREATING POLICIES, PRACTICES. POLICIES WITH SMALL P ON HOW TO DO THIS RESEARCH. THIS IS A PAPER THAT I GOT TO WRITE WITH SOME AMAZING SCIENTISTS WHO ALSO STUDY ALZHEIMER'SS DISEASE BUT ARE MORE BROADLY FANTASTIC FOLKS. THE IDEA THAT WE HAVE ENROLLMENT TABLES FOR NIH STUDIES BUT THERE IS NO ACCOUNTABILITY WHEN PEOPLE DON'T WHEN RESEARCHERS DON'T RECRUIT AND RETAIN THOSE MINORITIZED GROUPS. THEY SAID THEY WOULD. THAT A FLAW IN THE SYSTEM THAT PEOPLE ARE NOT INCENTIVIZED BECAUSE THERE IS NO ACCOUNTABILITY WHEN THEY DON'T DO IT. THERE IS SO MUCH WORK THAT NEEDS TO BE DONE AROUND INCLUSIVITY AND RESEARCH INCLUDING MAKING SURE THAT THE ENROLLMENT GOALS ARE SCIENTIFICALLY VALID AND JUST SO THAT WHO IS INCLUDED IN YOUR STUDY SHOULD REFLECT THE BURDEN OF WHO HAS THE HIGHEST DISEASE. IT HAS BEEN SOMETHING THAT IS FLAWED. WE'RE SEEING MORE AND MORE RECOMMENDATIONS AROUND HOW TO BUILD STRUCTURE AND EBONY LED A GROUP OF US WHO PUT TOGETHER RECOMMENDATIONES AROUND THIS. HOW TO SET UP A STRUCTURE. WHAT IS NEEDED TO HAVE INCLUSIVE TEAMS. THERE ARE LOTS OF RECOMMENDATIONS THAT ARE OUT THERE THAT I'M NOT FULLY CONFIDENT THAT SYSTEMS AND INSTITUTIONS ARE READY TO 'EM IMPLEMENT. *. ON THE POSITIVE SIDE IT'S BEEN GREAT TO SEE SOME OF THE CHANGES SOME OF THE NEW INITIATIVES AT NIH. THIS IS A FUNDING ANNOUNCEMENT FROM -- STARTED HAVING ENHANCED DIVERSITY OPTIONS. THIS IS A SEPARATE RFA THAT FOCUSED ON DIVERSITY. AND THE EXPECTATIONS ARE DIFFERENT. AND THE FUNDING IS DIFFERENT SO MORE DOLLARS INTENDED -- AVAILABLE TO RECRUIT FOR ENHANCED DIVERSITY. I WOULD LIKE TO THINK THAT I HAD SOME ROLE IN THIS. I'M NOT FOR SURE BUT A FEW YEARS AGO WE WERE ASKED TO INCREASE THE TO ADD ON MORE AFRICAN-AMERICANS TO ONE OF THE -- TO THE MERGE STUDY. I WAS BROUGHT IN BY DAN ROAD ENAND OTHERS TO PUT TOGETHER A RE* RECRUITMENT PLAN. THAT PLAN WAS MORE EXPENSIVE THAN THEY THOUGHT IT WAS GOING TO BE. I HAD TO GO THROUGH MULTIPLE ROUNDS OF JUSTIFYING WHY IT WAS GOING TO COST MORE. WHY YOU CAN'T JUST RECRUIT THEM AND EXPECT THEY WILL BE RETAINED IF YOU DON'T CONTINUE TO ENGAGE THEM. SO REALLY -- IT WAS WONDERFUL TO SEE THAT THERE ARE STEPS THAT WERE TAKEN AND THAT PUT IN PLACE AS AN OPPORTUNITY FOR ENHANCE DIVERSITY. EVEN WHEN WE DO A GREAT JOB OF ENGAGING COMMUNITIES OUR SYSTEMS ARE NOT OFTEN PREPARED. SO GETTING DOLLARS OUT THE DOOR. MAKING OUR COMMUNITY PARTNERS DO THE SUBSTANTIAL AMOUNT OF WORK IS REALLY CHALLENGING. LOOKING AT SOME OF THE BARRIERS OF FISCAL AND ADMINISTRATIVE BARRIERS TO ENGAGE IN COMMUNITY AND RESEARCH. AND SO YOU SEE HERE INSTITUTIONAL POLICIES. THE BURDEN OF THE WORK. SO IT WAS GREAT TO HAVE THAT LISTED BUT MANY OF THESE ISSUES WOULD BE OVERCOME IF COMMUNITY ORGANIZATIONS DIDN'T HAVE TO RELY ON THE ACADEMIC INSTITUTIONS TO ACTUALLY PAY THEM. SO DIRECTLY PAYING THEM FROM THE FUNDER WOULD BE GREAT AND THERE ARE MANY INITIATIVES AGAIN UNDER WORKS INCLUDING COMPASS BY NIH THAT IS REALLY EXCITING TO SEE OPPORTUNITIES TO ENGAGE COMMUNITIES AS PARTNERS. 7 IT'S IMPORTANT DURING THE PROCESS THAT THERE ARE EFFORTS TO ADDRESS THESE BARRIERS TO ENGAGEMENT AT THE INSTITUTIONAL LEVEL AND PAYMENTS AND EXPECTING THE COMMUNITY CAN BE ACTIVELY ENGAGED BEFORE THE GRANT IS AWARDED AND THE PROCESS OF WRITING THE GRANT IS REALLY UNREALISTIC FOR MANY COMMUNITY ORGANIZATIONS. AND WE'RE PLEASED TO BE A PART OF THE P50 FAMILY -- THAT IS FOCUSED ON CHRONIC DISEASE DISPARITIES AND HAS COMMUNITY CENTERED HERE IN THE MIDDLE. HOPEFULLY WE'LL START TO SEE MORE FUNDING OPPORTUNITIES FOCUSED HERE BUT ALSO I THINK THERE ARE OPPORTUNITIES TO REALLY MOVE UPSTREAM AND NOT JUST FOCUSING ON THE CHRONIC DISEASES AFTER PEOPLE HAVE THE CHRONIC DISEASES TO ENGAGE IN THE PREVENTION THERE. AND AS WE'RE SEEING MORE AND MORE OPPORTUNITIES FROM AROUND CHANGING IN STRUCTURES AND NEW RFAs. VERY EXCITED TO SEE THIS ONE FOCUSED ON STRUCTURAL RACISM. MANY PEOPLE HAVE BEEN INTERESTED IN THIS AND NOT HAVING OPPORTUNITIES TO DO THE WORK NOT HAVING FUNDING AVAILABLE SO THAT RO1 ANNOUNCEMENT THAT WAS HERE COMMITTING $30 MILLION FOR STRUCTURAL RACISM -- I HIGHLIGHT HERE SOMETHING THAT I WOULD LOVE TO SEE DIFFERENTLY. THAT AMONG THOSE INSTITUTIONS AND I THINK THERE WERE MORE THAN 20 INSTITUTES AND CENTERS AT NIH WHO WERE A PART OF THAT FUNDING ANNOUNCEMENT THE INSTITUTION NIMHD HAD THE MOST THAT WAS $5 MILLION GOING TO BE AVAILABLE FOLLOWED BY NIA AND NINR BUT WHEN YOU LOOK AT THE PERCENTAGE OF THE BUDGE COMMITTED TO THAT STILL RELATIVELY SMALL BUT MUCH SMALLER FOR SOME OF THE INSTITUTIONS THAT HAD MORE FUNDING. NCI WITH NEARLY $6.5 BILLION AT THE TIME. SO HAVING SOME EXPECTATIONS THAT ALL OF THE BURDEN FOR FUNDING THIS OR THE GREATEST BURDEN IS NOT PLACED ON THE INSTITUTES AND CENTERS THAT HAVE LESS FUNDING AVAILABLE OR WHO ARE ALREADY COMMITTED TO THE WORK. 7 SO I THINK I WILL STOP HERE AND MAKE SURE I HAVE TIME TO ANSWER QUESTIONS. AGAIN REALLY APPRECIATE THE OPPORTUNITY TO SHARE SOME OF OUR WORK. >>WELL, LET ME SAY HELLO. IT'S GREAT TO SEE YOU, DR. WILKINS. I'M MONICA. I'M GOING TO BE MODERATING THE Q&A. LET ME GIVE YOU AROUND OF A VIRTUAL ROUND OF APPLAUSE. * VERY COMPREHENSIVE. YOU TOUCHED ON SO MANY IMPORTANT ISSUES THAT HAVE BEEN LONG-STANDING. THAT NEED TO BE ADDRESSED AND THAT WE NEED TO THINK MORE CREATIVELY AND THOUGHTFULLY ABOUT HOW TO DO THAT AND SO, I'VE ALWAYS APPRECIATED YOUR WORK AND BEING A MAJOR THOUGHT LEADER IN THIS SPACE. SO WHILE SOME QUESTIONS COME IN AND AS THEY COME I WILL BE ASKING -- JUST TO GET US STARTED. YOU MADE A GREAT POINT IN THAT MOST OF THE RESEARCH IN THIS SPACE ESPECIALLY AS WE THINK ABOUT BIOMEDICAL RESEARCH IS AT THE INDIVIDUAL LEVEL. WE THINK ABOUT WHAT IS WRONG WITH PEOPLE. HOW CAN WE HELP FIX THEM? AND ALSO JUST THINKING THAT THIS ISSUE IS ABOUT ACCESS TO CARE. ONE OF THE QUESTIONS I HAVE FOR YOU IS GIVEN THAT THAT IS HOW MANY SCIENTISTS HAVE BEEN TRAINED TO THINK AND PRACTICE. NOT REALLY TRAINED TO DO AND CONDUCT RESEARCH AT THE STRUCTURAL LEVEL OR AT A COMMUNITY LEVEL -- OR TO ADDRESS SOME OF THE IN TRACTABLE UPSTREAM CONTRIBUTORS. HOW CAN RESEARCHERS, SCIENTISTS -- PEOPLE WANTING TO MAKE PROGRESS IN THIS SPACE HELP ADDRESS SOME OF THE UPSTREAM AND OFTEN STRUCTURAL FACTORS IN THE CONTEXT OF THE WORK THAT THEY DO. >>YEAH AND THANK YOU SO MUCH FOR YOUR KIND REMARKS EARLIER AND WONDERFUL TO CONTINUE TO LEARN FROM YOU AND YOUR ROLE AT NIMHD AS WELL. I THINK IT'S REALLY A LEAP FOR A LOT OF OF US WHO HAVE DONE RESEARCH FOR A LONG TIME. ESPECIALLY PHYSICIANS. IN MEDICINE WE'RE TAUGHT TO PRACTICE TO PROVIDE CARE AT THE INDIVIDUAL LEVEL. AND SO SO MUCH -- THE FOUNDATION OF HOW WE THINK HAS BEEN FOCUSED ON THE INDIVIDUALS. SOME OF THE MOST AMAZING WORK THAT I'VE SEEN RECENTLY I THINK REFLECTS WHY WE HAVE TO HAVE THESE TRANSDISCIPLINARY TEAMS. IT'S WONDERFUL THAT THEY'VE BEEN SUPPORTING THESE FOR A LONG TIME. BUT SEEING SOME OF THE WORK THAT WE'RE DOING NOW IN OUR P50 AND BEFORE IN OUR DISPARITY COLLABORATIVE HAVING PEOPLE SIDE BY SIDE WHO ARE GENETICISTS WORKING WITH SOCIAL SCIENTISTS AND COMING TO SOME SHARED UNDERSTANDINGS OF HOW TO MOVE FORWARD HAS REALLY BEEN TRANSFORMATIVE. SO WE'RE SEEING MORE AND MORE OF THESE STUDIES WHERE YOU'RE ACTUALLY ALLOWED TO GIVE PEOPLE MONEY AS AN INTERVENTION TO SEE IF IT IMPROVES THEIR HEALTH OUTCOMES. FOR SOME REASON THAT SEEMS -- -- JUST SO FAR FETCHED THAT WE COULD USE FINANCIAL INCENTIVES OR EVEN FRESH FRUITS AND VEGETABLES BEING DELIVERED TO PEOPLE'S COMMUNITIES WHERE THEY LIVE AND FOOD DESERTS OR FOOD SWAMPS AS INTERVENTIONS. AT TIMES IT COST MUCH LESS THAN CREATING TRANSGENIC MICE. BUT THE IDEA THAT WE'RE GIVING PEOPLE MONEY AND ADDRESSING THE UPSTREAM FACTORS HAS BEEN HARD FOR PEOPLE WHO ARE TRAINED IN A DIFFERENT WAY IN A MOLECULAR LEVEL. SO MORE OPPORTUNITIES I WOULD SAY TO WORK IN TEAMS WITH PEOPLE FROM DIFFERENT DISCIPLINES. IT'S VERY IMPORTANT OF COURSE. I WOULD ALSO ADD THAT PEOPLE THAT COME FROM MARGINALIZED AND MINORITIZED BACKGROUNDS NEED TO BE PART OF THE TEAM BOOS THE SOLUTIONS -- WHEN SOME OF THE STUDIES ARE DESIGNED WITH INTERVENTIONS IF YOU'RE FROM A BACKGROUND A COMMUNITY HAVE AN IDENTITY WHERE YOU KNOW THIS IS NOT GOING TO WORK, YOU'RE GOING TO HAVE A DIFFERENT STRATEGY WHEN YOU'RE DESIGNING THE STUDY OR AT LEAST DISRUPTING THE STUDY BEING DESIGNED. >>THANK YOU. THANK YOU FOR THOSE GREAT POINTS. I WOULD LIKE TO ASK THE NEXT QUESTION FROM OUR AUDIENCE. I MENTIONED THAT WE NEED TO DISRUPT TO ADDRESS HEALTH DISPARITIES. YOUNG INVESTIGATORS ARE MORE POSITIONED FOR DISRUPTION AS THOSE MORE ESTABLISHED MIGHT BE MORE ACCUSTOMMORE A CU -- ACCUS. >>I'M FINDING WAYS TO ELEVATE THE VOICES OF THE YOUNGER GENERATION OF PEOPLE WHO THINK DIFFERENTLY. THEY ARE LESS WILLING TO ACCEPT SOME OF THE THINGS THAT WE'VE SEND IN THE PAST. I THINK THE EGFR IS A GREAT EXAMPLE. FOR US AT VANDERBILT THE PEOPLE WHO LED THAT INITIATIVE WERE MEDICAL STUDENTS AND RESIDENTS. THEY WERE GOING AROUND WITH THEIR PRESENTATIONS THEIR SLIDES AND MEETING WITH ME TO GET ADVICE ON WHO TO TALK TO SO WE CAN STOP USING THIS RACE BASE EGFR BECAUSE IT DOESN'T SEEM RIGHT AND IF I'M TELLING THEM THAT RACE IS A SOCIAL CONSTRUCT THEN WHY IS THIS HAPPENING. WHO IN THE SYSTEM CAN CHANGE IT AND THEY WERE RELENTLESS IN THIS PROCESS. THIS IS HAPPENING TWO DECADES AFTER I FINISHED MEDICAL SCHOOL SO WHERE HAVE I BEEN? I'VE SEEN THIS AND I DIDN'T CHALLENGE IT. THAT IS A LEVEL OF HUMILITY I HAVE TO HAVE AND QUESTIONS I HAVE TO ASK MYSELF. WHAT HAPPENED? WHY DIDN'T I THINK DIFFERENTLY ABOUT THAT H. WHY DID I THINK IT WAS NOT OKAY TO CHALLENGE -- THAT I SHOULDN'T CHALLENGE IT. SO I DO THINK THAT REFLECTING ON THAT IS IMPORTANT. AND NOT BEING DEFENSIVE. THAT SOMETIMES HAPPENS. BUT WHAT WE NEED FOR THOSE PEOPLE WHO ARE YOUNGER I DON'T KNOW IF THEY ARE NECESSARILY IN THE POSITION. I THINK THEY HAVE THE DRIVE AND THE IDEAS BUT THEY ARE NOT IN A POSITION OF POWER SO WE HAVE TO FIND WAYS TO MOVE OUT OF THEIR WAY. MOVE THE BARRIERS OUT OF THEIR WAY OR PARTNER WITH THEM AGAIN TO CONTINUE TO ELEVATE THEM TO DISRUPT SYSTEMS. SO WE RECENTLY AT VANDERBILT ABOUT--ABOUT 8 MONTHS AGO RELEAR PLAN AND OUR GOAL OF BECOMING ANTI RACIST ORGANIZATION. WE HAVE MORE THAN 150 SPECIFIC ACTIONS THAT ARE LISTED THAT WILL TAKE AND THAT HAS THE EXPECTATION THAT THERE IS I LEADER WHO IS RESPONSIBLE AND A LEADER WHO'S ACCOUNTABLE FOR EACH OF THOSE ACTIONS. SO A LOT OF THE ACTUAL ACTIONS AND THE IDEAS -- CAME FROM RECOMMENDATIONS THAT A LOT OF PEOPLE WHO ARE MEDICAL STUDENTS, RESIDENTS WHO ARE RESEARCH STAFF MEMBERS AND PEOPLE WHO ALSO ARE WORKING IN FOOD AND NUTRITION THESE ARE IDEAS THAT CAME FROM A BROAD GROUP OF PEOPLE BUT NOW THE ACTUAL ACTIONS WHICH WE HAVE COMMITMENT AT THE HIGHEST LEVELS OF OUR INSTITUTIONS, THE ACTIONS, THE RESPONSIBILITY AND COUNTABILITY ARE IN THE C-SUITE. HOW WE LEVERAGE THOSE GREAT IDEAS AND USE THEM IN WAYS THAT ARE DISRUPTING THE SYSTEM AND CHANGING THE SYSTEM IS IMPORTANT. WE STILL COULD DO A BETTER JOB AGAIN OF GETTING THOSE YOUNGER FOLKS INTO POSITIONS OF POWER SOONER. AND THAT IS SOMETHING THAT I STILL STRUGGLE WITH. HOW DO WE BALANCE THAT NOT OVER BURDENING THEM BUT GIVING THEM THE OPPORTUNITIES TO THRIVE. >>THAT IS REALLY GREAT. YOU'RE RIGHT. AS YOU'RE SPEAKING I'M THINKING ABOUT MYSELF EVEN. IT DOES REQUIRE BRAVERY TO SPEAK UP AND SPEAK OUT. AND TO GET MORE PEOPLE INVOLVED WHO ARE WILLING TO DO THAT. WE ARE IN A DIFFERENT TIME AND THINGS LIKE SOCIAL MEDIA AND Twitter REALLY HELP PEOPLE TO AMPLIFY VOICES SOMETIMES THAT DON'T HAVE ANOTHER AVENUE TO DO SO. WE'VE SEEN SUCCESS WITH GETTING ATTENTION WITH SOME THINGS. I HAVE TWO QUESTIONS FROM OUR AUDIENCE. FIRST A COMMENT. FROM SOMEBODY IN THE AUDIENCE SAYING YOU ARE AN INSPIRATION. THANK YOU SO MUCH FOR YOUR TALK AND YOUR GREAT WORK. THERE ARE TWO QUESTIONS. ONE THAT IS SERIOUS AND ONE MORE FUN BUT ALSO A REAL QUESTION. SO LET'S START WITH THE FIRST ONE. IF WE IMAGINE A WORLD WHERE PHARMA CAN GET TO THE POINT WHERE OUR TRIALS AND DATA ARE ACCURATELY REFLECTED OF REPRESENTATIVE POPULATIONS IDEALLY THIS WILL MAKE REAL WORLD EVIDENCE MORE PREDICTABLE, RIGHT OR WHAT DO YOU THINK IS THE TRICKLE EFFECT ON REAL WORLD EVIDENCE? >>HMMM. THANK YOU FOR THE KIND COMMENTS. I WILL SAY THAT THE FIRST PART OF THAT QUESTION -- THE ANSWER IS SOMEWHAT NUANCED. IF PHARMA IS DOING STUDIES THAT REFLECT THE POPULATION WHAT DIFFERENCE WILL THAT MAKE -- I THINK DEPENDS. I LIKE TO THINK ABOUT TRIALS IN PARTICULAR DRUG TRIALS AS INCLUSIVE AS IN ONE BUCKET AND EQUITABLE IN ANOTHER BUCKET. INCLUSIVITY IS ONE PIECE. SO HAVING A STUDY THAT REFLECTS THE POPULATION OF PEOPLE WHO HAVE THE BURDEN OF THE DISEASE IS THE INCLUSIVITY PART. THE EQUITABLE PART IS MAKING SURE THAT YOU HAVE CAPTURED DATA THAT IS RELEVANT TO ALL OF THE OUTCOMES THAT YOU HAVE SOCIAL FACTORS THAT YOU HAVE DATA ON STRUCTURAL FACTORS. THAT YOU UNDERSTAND THE ENVIRONMENT AND THE CONTEXTUAL PIECES OF HOW PEOPLE ARE LIVING AND WORKING AND PLAYING AND PRAYING. WHEN THEY ARE PART OF THE STUDY. AND THAT THERE ARE THE OPPORTUNITIES THE BURDEN AND ALL OF THOSE THINGS ARE -- THERE IS SPACE FOR THAT IN THE STUDY. SO I DON'T KNOW THAT JUST -- I'VE WRITTEN ABOUT THIS BEFORE -- IT'S NOT JUSTIN COLLUSION ALONE IS NOT * GOING TO LEAD TO NECESSARILY LEAD TO FEWER DISPARITIES OR ACTUAL HEALTH EQUITY. IT COULD CONTRIBUTE BUT I DON'T KNOW THAT IT IS THE ONLY -- I DON'T KNOW HOW MUCH IT WILL IMPACT THERE. AND I FORGOT THE SECOND PART. THE TRICKLE EFFECT. THE -- HOW EVIDENCE GETS ADOPTED OF COURSE THERE ARE MANY FACTORS THERE. WE KNOW TRADITIONALLY THE UP TAKE OF EVIDENCE HAS TAKEN 17 YEARS IN SOME OF THE MORE FAMOUS STUDIES THAT HAVE BEEN QUOTED BUT WHETHER OR NOT EVIDENCE GETS ADOPTED, INTERVENTIONS, THERE IS UP TAKE OF INTERVENTIONS DEPENDS ON MANY THINGS INCLUDING THE AVAILABILITY OF THE INTERVENTION, THE COST. WHETHER OR NOT IT'S CULTURALLY RELEVANT. I THINK WE SHOULD BE DOING A BETTER JOB AT THE BEGINNING OF THE STUDIES AND THINKING ABOUT THAT DISSEMINATION AND UP TICK OF EVIDENCE. THERE HAS BEEN A PUSH FOR THAT OVER THE LAST NUMBER OF YEARS BUT OFTEN THE STUDIES ARE NOT FUNDED TO SUPPORT THE EVIDENCE DISSEMINATION. PEOPLE ARE DEPENDENT ON JOURNALS. THERE IS A DELAY IN THE PUBLICATIONS BECAUSE THEY ARE WAITING FOR THE JOURNALS. THE INFORMATION EVIDENCE DOESN'T GET TO THE COMMUNITY HEALTH CENTERS AS WELL. SO I THINK THERE IS -- THERE ARE A LOT OF THINGS THAT THAT NEED TO CHANGE IF WE'RE GOING TO IMPROVE THE DISSEMINATION AND IMPLEMENTATION OF THE EVIDENCE. >>THANK YOU. OKAY. SO THIS INDIVIDUAL HAS A SECOND QUESTION AND THIS WAS WHAT THEY REFERRED TO AS A FUN ONE. WHAT KEEPS YOU GOING ON THE TOUGH DAYS? SO TOUGH DAYS -- THERE ARE MANY. I GET A LOT OF INSPIRATION FROM PEOPLE ON MY TEAM. WHEN EVERYBODY WAS IN PERSON IT WAS EASIER TO DO A WALK AROUND THE OFFICE AND GET SOME INSPIRATION FROM PEOPLE ON THE TEAM SO THAT HAS BEEN MORE CHALLENGING. I USED TO DRIVE TO THE COMMUNITIES. AND SEE PEOPLE DOING AND LIVING AND DOING THINGS THAT MAKE ME WANT TO MAKE SURE THEY HAVE THE BEST OPPORTUNITIES TO BE HEALTHY. AND THRIVING. I WOULD SAY THE WORK THAT I GET TO DO HERE IN NASHVILLE THERE ARE A GREAT TEAM OF PEOPLE WHO ARE * WILLING TO LISTEN. WHO ALLOW ME TO PUSH AND SOMETIMES I PUSH HARD SO THAT ALSO KEEPS ME GOING. EVEN WHEN WE'RE NOT ABLE TO CROSS SOME OF THE BARRIERS -- THRESHOLDS OR MOVE THE BOULDER UP THE HILL AS FAST AS I WOULD LIKE WE'RE SEEING PROGRESS AND BEING ABLE TO MEASURE THAT. AND TRACK AND SHOW THE OUTCOMES. THAT IS DEFINITELY VERY INSPIRING. >>THANK YOU FOR THAT. OKAY. NEXT QUESTION. YOU KNOW THAT NIH RELEASED A NEW DATA MANAGEMENT AND SHARING POLICY. HOW DO YOU SEE IT HAVING AN EFFECT OFF COMMUNITY TRUST AND PERCEPTIONS OF RESEARCH. 8 >>THAT IS ONE THAT I'M HESITANT TO ANSWER BECAUSE AND I LEARNED THIS EARLY IN MY CAREER NEVER PRESUME I KNOW WHAT THE COMMUNITY IS GOING TO SAY OR THINK OR HOW THEY ARE GOING TO REACT. SO I WILL ANSWER WITH THE CAVEATS OF THAT I HAVE NOT ASKED ANYBODY IN MY COMMUNITY OR COMMUNITIES THAT WE WORK WITH THAT PARTICULAR QUESTION. BUT JUST IN GENERAL I WOULD SAY THAT ANY CHANGE AND ISSUES AROUND TRANSPARENCY, DATA SHARING THAT DOESN'T RESPECT THE FACT THAT THERE ARE DIFFERENCES IN VIEWS OF HOW, WHO OWNS DATA? WHAT PEOPLE ARE SHARING WHEN THEY ARE PARTICIPATING IN RESEARCH. ALL OF THOSE -- ANYTHING ALONG THOSE LINES HAVE THE POTENTIAL TO SEED MORE DISTRUST OR DECREASED TRUST. SO THE PIECES AROUND -- THE IMPORTANCE OF TRANSPARENCY, THE IMPORTANCE OF DATA OWNERSHIP. WHO HAS YOUR DATE AND WHEN THEY HAVE ACCESS TO IT. THOSE ARE COMPLICATED THINGS BUT ALSO WHAT WE LEARNED IN OUR FOCUS GROUPS WITH BLACK AND HISPANIC COMMUNITIES IS AROUND THE ISSUE OF PRIVACY AND SECRECY. SO THERE ARE ALREADY ISSUES WITH PEOPLE BELIEVING THAT WE'RE GOING TO KEEP THEIR INFORMATION PRIVATE AND CONFIDENTIAL. THAT WE'RE NOT TRYING TO PURPOSEFULLY TRYING TO HARM THEM. THESE NEW STRATEGIES AND APPROACHES IN POLICIES NEED TO UNDERSTAND THAT THAT LENS -- COULD HAVE A NEGATIVE IMPACT ON WILLINGNESS TO PARTICIPATE IN STUDIES. BUT WE NEED TO THINK THROUGH HOW TO MITIGATE SOME OF THAT. WHAT DO WE NEED TO HAVE IN PLACE? ADVISORY GROUPS? COMMUNITY MEMBERS WHO SOMEHOW ARE ABLE TO TRACK OR GET INFORMATION ABOUT HOW DATA IS BEING SHARED. TO HEAR REPORTS OF SECURITY BREACHES. AND THOSE SORTS OF THINGS. WHAT IS THE STRUCTURE FOR MONITORING AND SHARING INFORMATION BACK TO THE COMMUNITY ALSO NEEDS TO BE PART OF THE PLAN. >>THANK YOU AND APPRECIATE CERTAINLY THE CAVEAT AND THE REALLY GREAT EXAMPLE THAT YOU JUST GAVE THERE CULTURAL HUMILITY AND NOT ASSUMING WHAT WE KNOW. THE NEXT QUESTION, MY NAME IS CHERI ALISON. I'M A NEWSING STUDENT -- -- I'M A NEWSING STUDENT. * *. WHAT ARE SOME SUGGESTIONS YOU HAVE IN SUPPORTING HEALTH EQUITY THROUGH EVENTS LIKE THIS. >>GREAT TO HEAR THAT YOU'RE GETTING OUT IN THE COMMUNITY AND ENGAGING IN AND BEING THOUGHTFUL ABOUT THE APPROACH. HARD TO BE SPECIFIC WITH AN ANSWER HERE SINCE I DON'T KNOW THE DETAILS -- WHAT SPECIFICALLY ARE YOUR GOALS WITH BLACK MATERNAL HEALTH. IS IT AWARENESS. IS IT A SPECIFIC PROGRAM THAT YOU WANT TO ENGAGE THEM IN. SO I'LL JUST SAY SOME GENERAL -- GIVE SOME GENERAL THOUGHTS THERE. ONE IS THAT I WOULD SAY ONE OF THE MOST COMMON ISSUES THAT I SEE WHEN PEOPLE ARE DOING WORK IN THE COMMUNITY -- AND SAYING ESPECIALLY STUDENTS NOT BECAUSE STUDENTS BECAUSE THERE IS SOMETHING DIFFERENT ABOUT STUDENTS BUT OFTEN THAT STUDENTS ARE DOING SOMETHING FOR A TIME LIMITED PERIOD. BECAUSE OF THE NATURE. YOU'RE A STUDENT. YOU'RE GOING TO FINISH YOUR TRAINING AND MOVE ON. BUT I ALWAYS TRY TO ENCOURAGE STUDENTS TO PARTNER WITH AN EXISTING PROGRAM OR OFFICE SO WHATEVER IT IS THAT YOU'RE DOING IN THE COMMUNITY DOESN'T SEEM AS IF IT'S HELICOPTER OR LEAVING PEOPLE AFTER THE INITIATIVE OR PROJECT SO THERE IS SOME SUSTAINABILITY AND SO YOU'RE CONNECTED WITH SOMEONE WHO CAN KEEP AND HOLD AND ACTUALLY ENSURE THAT IT DOESN'T FEEL AS IF YOU'VE ABANDONED THE COMMUNICCOMMUNITY OR LEFT THEM . WE'RE ENGAGING FOR THE PURPOSES OF ENGAGE WE HAVE NOT THROUGH WHAT IS THE END POINT. WHAT DO YOU WANT THE WHITE HEALTH CARE PROVIDERS TO DO AND HOW WILL YOU KNOW IF YOU'RE SUCCESSFUL? YOU WANT THEM TO INCREASE THEIR UNDERSTANDING SO THAT THEY WILL DO WHAT? ARE THEY GOING TO TREAT THEIR PATIENTS DIFFERENTLY. SEE MORE PATIENTS? BE INVOLVED AND HOW WILL YOU MEASURE THAT. IF IT'S FOR A WEEK THAT MIGHT BE A CHALLENGE. BUT ENGAGEMENT NEEDS TO BE CLEAR THAT THERE IS SOME EVIDENCE. IF YOU THINK YOU ENGAGED SOMEONE BUT YOU CANNOT SHOW ANY EVIDENCE THEN IT WAS AN ACTIVITY. HOW FAR DO YOU KNOW YOU INCREASED AWARE NEDS. * IF YOU WANT TO HAVE SOME AWARENESS THAT IS GOING TO HAPPEN ANNUALLY. WHO IS GOING TO BE RESPONSIBLE FOR THAT ONCE YOU GRADUATE. >>THANK YOU FOR THAT AND TAKING THE TIME TO ANSWER HER QUESTION. SO A QUESTION FOR YOU. I MENTIONED AN INTERESTING TERM. THAT WE NEED TO DEBIOLOGIZE RACE. AN INTERESTING TERM. CAN YOU ELABORATE ON HOW TO DO THIS? GIVEN THE PERSISTENCE OF RACE BASED AND ANCESTRY BASED MEDICINE AND WITH THAT WHEN WE THINK ABOUT MOVINGS FORWARD YOUR THOUGHTS OTICON PEARSON TO WHITE PERSONS * IN THE EXAMINATIONS AND THE APPROPRIATENESS OF THAT. >>SO I STUMBLED UPON THE BIOLOGIZED OF RACE AND THAT IS WHAT I'VE BEEN TRYING TO SAY. MOST OF US DON'T REMEMBER WHEN WE LEARN THE DIFFERENCE BETWEEN RACES. AND WE JUST -- WE SEND ALONG THE WAY THAT OH, HER SKIN IS DARKER THAN MINE. HER HAIR IS CURLIER THAN MINE. SO SHE IS BLACK AND I'M NOT. BUT YOU SEND IT. IT WAS SOMETHING THAT WAS NOT TAUGHT TO YOU IN SCHOOL AND YOU ALSO SEND THAT OH, THEIR HEALTH IS WORSE OR THESE THINGS ARE DIFFERENT. AND THAT IS ACTUALLY HOW WE'VE PROCEEDED IN MEDICINE FOR A LONG TIME. WE DON'T HAVE ANY DISCUSSIONS ABOUT WHAT RACE IS. WE JUST JUMP RIGHT INTO THESE DIFFERENCES AND HEALTH OUTCOMES. SO THE NATURAL PRESUMPTION HABIT MUST BE BECAUSE THERE IS SOME DIFFERENCE IN BIOLOGY OR GENETICS. IF YOU LOOK AT MANY STUDIES THAT ARE PUBLISHED -- THE NORM HAS BEEN WE FOUND THESE DIFFERENCES BY RACE. MORE STUDIES ARE NEEDED TO SHOW THE GENETIC OR THE PHYSIOLOGICAL DIFFERENCES. WE HAVE EMBEDDED RACE INTO -- WE'VE CONNECTED RACE AND BIOLOGY IN SO MANY WAYS THAT IT SHOULD NOT BE SURPRISING THAT PEOPLE PRESUME THAT THERE ARE BIOLOGICAL DIFFERENCES. SO FOR ME IT'S LIKE THE ANTIRACIST MOVEMENT. IF WE'RE NOT ACTIVELY SAYING THERE IS NO EVIDENCE THAT THERE ARE BIOLOGICAL DIFFERENCES IN A RACE BY THESE SOCIAL CATEGORIES THEN WE'LL CONTINUE TO SEE PEOPLE PERPETUATE THESE MYTHS AND MISUNDERSTANDINGS AND EXPECT THERE IS SOME CONNECTION TO INHERENT DIFFERENCES BASED ON BIOLOGY. EVEN THOUGH IT'S BEEN DISPROVEN BUT IT'S HARD TO DISPROVE SOMETHING THAT HAS NEVER BEEN PROVEN. WE JUST SEND THAT WE'RE DIFFERENT RACIALLY WITH NO EVIDENCE OF IT. REGARDING THE SECOND PART SHOULD WE BE COMPARING DIFFERENT GROUPS TO WHITE PEOPLE. AT TIMES IT MAY BE APPROPRIATE. BUT MOST OF THE TIME IT'S PROBABLY NOT. AND I WOULD SAY ONE OF THE -- THIS IS WORKING WITH SOME YOUNG PEOPLE WITH SOME STUDENTS WORKING WITH SOME BIOSTATISTICS STUDENTS WHO NEEDED SOME DATA. I HAVE DATA SO THEY WERE GOING TO DO SOME ANALYSIS FOR ME. AND THEIR ANALYSIS CAME BACK WITH THEY COMPARED BLACK PEOPLE TO THE WHOLE GROUP. THEY COMPARED WHITE PEOPLE TO THE WHOLE GROUP. ASIAN PEOPLE TO THE WHOLE GROUP AND I WAS LIKE HMMM. WHY HAVEN'T WE DONE THIS BEFORE? OF COURSE, WE KNOW AND WE'RE SEEING MORE PUSH BACK ON THAT OF WHY ARE WE PRESUMING THAT WHITE PEOPLE ARE THE NORM OR WHY ARE WE GIVING THEM SOME SORT OF HIERARCHY OR ARE WE DOING THAT WHEN WE COMPARE ALL GROUPS. BUT I SHOW THE DATA FROM OUR TRUST SCALE. IT WAS INTENDED TO SHOW RACIAL DIFFERENCES AND DEMONSTRATE THAT. SO I THINK IT WAS PURPOSEFUL. BUT IN GENERAL WE SHOULD BE MOVING TOWARD COMPARING PEOPLE TO THE AVERAGE MEDIAN OR SOME GROUP. 7 >>WELL, I'M MINDFUL TIME HERE. IT IS 3:29 EASTERN. THERE ARE MORE QUESTIONS THAT WE WON'T GET TO BUT I APPRECIATE EVERYBODY FOR SENDING THEIR QUESTIONS IN. I THINK WE'LL CONCLUDE AT THIS TIME. WE WANT TO THANK YOU DR. WILKINS FOR A GREAT PRESENTATION. FOR SPENDING YOUR TIME WITH US. WE REALIZE THAT YOU'RE A VERY BUSY PERSON. YOU HAVE YOUR Twitter HANDLE AND CONTACT INFORMATION. SO I ENCOURAGE THOSE WHO HAD ADDITIONAL QUESTIONS TO REACH OUT. I WANT TO THANK EVERYBODY FOR ATTENDING TODAY AND WE HOPE TO SEE YOU AT FUTURE DIRECTOR'S SEMINARS. THANK YOU, EVERYONE. >>THANK YOU SO MUCH FOR HAVING ME.