WE ARE CALLING THIS MEETING TO ORDER
THE 63RD MEETING OF THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES COUNCIL TO
ORDER AND WE WILL WELCOME EACH
AND EVERY ONE OF YOU HERE.
THANK YOU FOR YOUR SERVICE.
HELLO TO FOLKS AROUND US AND
BEHIND US. WE HAVEN'T HAD THIS
RECENTLY AND ARE ALL HAPPY TO BE
HERE DO WE WANT TO GO AROUND THE
TABLE AND INTRODUCE OURSELVES AR
MOVE TO THE TRADITIONAL ROLL
CALL?
OKAY. DR. AGUILAR.
>>GOOD MORNING. I'M MARIA
AGUILAR AND ASSOCIATE PROFESSOR
AT UNIVERSITY OF SOUTHERN
CALIFORNIA AND FIELD OF
EXPERTISE IS USING EXPERIMENTAL
METHODS TO NUNS COUNCIL EFFECTS
OF [INDISCERNIBLE] PROGRAMS ON
HEALTH AND WELLBEING LOWER
INCOME POPULATION AND
PARTICULARLY MINORITY
POPULATION. THANK YOU.
PLEASURE TO BE HERE.
>>D BARNES.
>>GOOD MORNING. I'M DIRECTOR
OF THE ALZ HIEMER'S RESEARCH
CENTER AND EXPERTISE IS IN
ALZHEIMER'S DISEASE AND
SPECIFICALLY EPIDEMIOLOGY OF
ALZHEIMER'S AND COGNITIVE
DECLINE IN AFRICAN AMERICANS.
HAPPY TO BE HERE.
>>GOOD MORNING. NEIL CALMAN
AND I'M A FAMILY PHYSICIAN IN
NEW YORK AND PRESIDENT OF THE
INSTITUTE FOR FAMILY HEALTH A
LARGE NETWORK OF HEALTH CENTERS
30 LOCATIONS IN NEW YORK CITY
AND UP THE HUDSON VALLEY AND
DEPARTMENT CHAIR AT COMMUNITY
MEDICINE AND HEALTH AT MT. SINAI
NEW YORK AND WORK IS ON
STRUCTURAL RACISM LOOKING AT THE
HEALTH CARE SYSTEM WRIT LARGE.
THANK YOU.
>>DR. ELLIOT?
>>GOOD MORNING, AMY ELLIOT
CLINICAL PSYCHOLOGIST AND CHIEF
HEALTH OFFICER IN RURAL SYSTEM
BASED IN SOUTH DAKOTA AND
PROFESSOR AND DIVISION CHIEF IN
UNIVERSITY OF PEDIATRICS AND
RESEARCH INTEREST IS IN EARLY
CHILDHOOD DEVELOPMENT WORKING
EXTENSIVELY IN RURAL AND
AMERICAN INDIAN POPULATIONS.
>>DR. JOHNSON?
>>GOOD MORNING. I'M KIMBERLY
JOHNSON, GERIATRICIAN AND --
>>YEAH. I'M ON RIGHT NOW.
>>GREAT. THANK YOU. THANK
YOU.
>> GOOD MORNING, AGAIN. I'M
KIMBERLY JOHNSON WITH MEDICINE
AND GERIATRICIAN AT DUKE
UNIVERSITY SCHOOL OF MEDICINE
AND DIRECT THE RESEARCH CENTER
IN EXCELLENCE AND MINORITY
HEALTH AND HEALTH DISPARITY
RESEARCH AND PROGRAM OF RESEARCH
IS ON ADDRESSING DISPARITIES AND
SERIOUS ELDER CARE IN AFRICAN
AMERICANS.
>>JOINING BY ZOOM IS DR.
WEZNICAL.
>>YEAH.
>>HI. I'M KEN AND FROM THE
UNIVERSITY OF MICHIGAN SCHOOL OF
PUBLIC HEALTH AND
[INDISCERNIBLE] CANCER CENTER
AND ASSOCIATE DIRECTOR OF --
CENTER FOR HEALTH COMMUNICATIONS
RESEARCH AND HEALTH
COMMUNICATIONS RESEARCHER AND
DESIGN INTERVENTIONS MANY
TARGETING SPECIAL POPULATIONS
AND OUR INTERVENTIONS TEND TO
FOCUS ON INDIVIDUAL TAILORED
APPLICATIONS AS WELL AS
MOTIVATIONAL INTERVIEWING.
>>THANK YOU. DR. SOLOMON?
>>GOOD MORNING. I'M BILL
SUJERLAND AND PROFESSOR OF
BIOCHEMISTRY AT HOW WARD
UNIVERSITY AND [INDISCERNIBLE]
PROGRAM AND I'M ALSO DIRECTOR OF
HOWARD'S NEW CENTER FOR DATA
SCIENCE AND RESEARCH INTEREST
HAS TO DO GENERALLY WITH THE
APPLICATION OF DATA SCIENCE
METHODS TO LEARN MORE ABOUT
CLIENT DISEASE BURDEN IN VARIOUS
NEIGHBORHOODS OF WASHINGTON, DC.
>>DR. [INDISCERNIBLE].
>>GOOD MORNING I'M
[INDISCERNIBLE] AND VICE -- AT
NYU SCHOOL OF MEDICINE AND AT
CENTER OF EXCELLENCE FOCUSED ON
ASIAN AMERICAN HEALTH. THANK
YOU.
>>DR. LONG.
>>HELLO I'M JUDITH LONG AND DA
REPRESENTATIVE TO COUNCIL AND
FROM -- I'M A FORMER DIRECTOR OF
VA CENTER OF EQUITY HEALTH AND
RESEARCH PROMOTION IN
PHILADELPHIA AND UNIVERSITY OF
PENNSYLVANIA CHIEF GENERAL
INTERNAL MEDICINE AND RESEARCH
FOCUSES ON INTERVENTIONS TO HELP
ADDRESS SOCIAL DETERMINANTS OF
HEALTH FOR LOW INCOME AND
MINORITY POPULATIONS.
>>DR. HUNTER JOINING US BY
ZOOM.
>>HI. I'M CLINICAL HEALTH
PSYCHOLOGIST AND EXOFISH YO
MEMBER AND ACTING DIRECTOR FOR
OFFICE OF BEHAVIORAL SCIENCES
AND SOCIAL SCIENCE RESEARCH AT
NIH. THANK YOU.
>>THANK YOU. DR. SHALE JOINING
BY ZOOM ALSO.
>>GOOD MORNING, DON. FAMILY
PHYSICIAN BY TRAINING AND
EXECUTIVE DIRECTOR POLICY
OVERSIGHT IN OFFICE OF SECRETARY
OFFICE OF AFFAIRS AND EXOFISH YO
MEMBER AND I'M GLAD TO BE HERE.
THANK YOU, SIR.
>>THANK YOU. ANYONE ELSE IN
THE ROOM THAT WE SHOULD
ACKNOWLEDGE IMMEDIATELY?
>>OKAY.
YES. WILL THE NIH STAFF AT THE
TAB
TABLE.
>>I'M DIRECTOR OF VISION OF
COMMUNITY HEALTH AND POPULATION
SCIENCE AT NIMHD. GOOD MORNING.
>>GOOD MORNING. I'M MONICA
WEBCOOPER DEPUTY DIRECTOR OF
MIHD.
>>GOOD MORNING I'M DIRECTOR OF
NATIONAL INSTITUTE ON MINORITY
HEALTH DISPARITIES.
>>GOOD MORNING I'M RINA DAAS
AND [INDISCERNIBLE] DIRECTOR OF
INTEGRATIVE AND BEHAVIORAL
HEALTH SCIENCES.
>>NOT HERE IS DR. PAYBECK AND
DR. VISCERA.
OKAY. WE WILL GET STARTED.
WE WILL NOW HAVE REVIEW OF THE
2022 COUNCIL MINUTES.
I WILL ASK FOR A MOTION BY SHOW
OF HANDS OR ACTUAL MOTION TO
APPROVE THE MINUTES FOR THE
FEBRUARY 2023 COUNCIL.
>>I MOVE THAT FEBRUARY 23
COUNCIL MEETING MINUTES BE
APPROVED.
>>I SECOND.
>>ALL IN FAVOR?
ANY OPPOSED?
THANK YOU. THAT MOTION PASSED.
THANK YOU VERY MUCH.
I GO TO ANNOUNCEMENT OF FUTURE
MEETING DATES. AGAIN, THAT WAS
UPLOADED IN THE ELECTRONIC
COUNCIL BOOK. JUST SO YOU KNOW,
SEPTEMBER 1, IT WILL BE THE NEXT
OPEN SESSION.
THE 2024 DATES OF FEBRUARY 2ND
AND MAY 31ST AND SEPTEMBER 6TH
AND FOR THOSE OF YOU PLANNING
INTO THE FUTURE, 2025 IS
FEBRUARY 4TH, MAY 16TH, AND
SEPTEMBER 5TH.
AGAIN, THEY ARE UPLOADED IN THE
COUNCIL BOOK AND AT THE END OF
THE AGENDA.
OKAY. AGAIN, I REMIND YOU TO
PLEASE NOTE THAT THE COUNCIL
MEMBER CAN ONLY HAVE ONE ABSENCE
PER CALENDAR YEAR.
AND THAT INDIVIDUALS CANNOT
SERVE ON ANY NIH PEER REVIEW
PANELS WHILE SERVING ON COUNCIL.
WITH THAT, WE WILL TURN IT OVER
TO OUR -- LEVERING BE UP THERE.
I CAN HELP YOU THROUGH HERE.
>>ALL RIGHT. GOOD MORNING,
EVERYONE. WELCOME TO THE FIRST
IN-PERSON MEETING SINCE
SEPTEMBER OF 2019 EXCITING AND
VERY GOOD CLOSED SESSION
YESTERDAY AND LOOK FORWARD TO
TODAY'S CONVERSATION.
I WILL -- I HAD MY SLIDES UP.
NOW THEY ARE -- THERE THEY GO.
THERE WE GO. NO PRESENTATION
MODE?
THERE WE GO.
I WILL GIVE YOU A QUICK TOUR OF
THE LAST 3.5 OR 4 MONTHS WHAT
HAS BEEN HAPPENING WITH NIMHD
AND NIH.
MOST IMPORTANTLY, JUST A MATTER
OF A COUPLE WEEKS AGO, MONICA
BERTINOLI WAS NOMINATED BY
PRESIDENT BIDEN AND INTENT TO --
AS NEXT NIH DIRECTOR SHE HAS
BEEN NOMINATED. OOPS. GETTING
BACK TO THE FIRST SLIDE AND
REMINDING YOU NIH DIRECTOR IS
SENATE CONFIRMED APPOINTMENT AND
NIC DIRECTOR IS NOT. THE
PROCESS WILL REQUIRE DR.
BERTIGNOLI TO FIRST MEET WITH
SENATORS ON THE HEALTH COMMITTEE
THAT HAS A HEARING FOR HER.
AND THEN A HEARING GETS
SCHEDULED THAT IS REALLY THE
SIGNAL THAT THINGS ARE ON TRACK
TO MOVE FORWARD WHEN THE HEARING
GETS SCHEDULED.
REMIND OUR AUDIENCE AT AUGUST
THAT IS FREQUENTLY A MONTH THAT
MEMBERS OF CONGRESS GO HOME.
WE ARE LOOKING FORWARD TO THIS
GETTING PUT ON TRACK BEFORE
THAT.
THEN THE FULL VOTE AMONG IN THE
SENATE HAPPENS AFTER THE
HEARING.
THIS IS A COMMITTEE. IT IS
CHAIRED BY SENATOR SANDERS AND
THE MAJORITY AND THE RANKING
MEMBER IS SENATOR KAS IDE.
MONICA HAS BEEN NCI DIRECTOR
SINCE OCTOBER. WE HAVE ALL
SPENT TIME WITH HER AT MEETINGS.
SHE HAS ALSO BEEN VERY OPEN AND
PUBLIC ABOUT HER DIAGNOSIS OF
EARLY BREAST CANCER AND HAS
COMPLETED THERAPIES FOR THAT.
WE ARE LOOKING FORWARD TO HAVING
HER BE QUICKLY APPROVED AND
CONFIRMED BY THE SENATE AND IN
PLACE.
UNTIL THAT MOMENT THOUGH, DR.
LAWRENCE TAYBACK WILL CONTINUE
TO BE ACTING DIRECTOR OF NIH AND
MONICA WILL BE NIC DIRECTOR WE
LOST SCIENTIFIC DIRECTOR
ANNAPOLIS WHO RETIRED AT END OF
FEBRUARY OF THIS YEAR.
AND ANNA AND I RECRUITED BACK TO
BE FIRST LATINA SCIENTIFIC
DIRECTOR AT NIH AND FIRST EVER
AT NIMHD AND SHE HAD A NUMBER OF
IMPORTANT ACCOMPLISHMENTS AND
RECRUITED 6 TENURE TRACK
INVESTIGATORS AND GUIDED THE
PROMOTION OF FIRST NIMHCD
INVESTIGATOR CALVIN TROY WHO HAD
BEEN RECRUITED UNDER PREVIOUS
SCIENTIFIC DIRECTOR AND WHEN I
ARRIVED IN 2015 HE HAD BEEN HERE
A COUPLE YEARS AND WILLIAM HAS
MAGNET FOR ATTRACTING
UNDER-REPRESENTED TRAINEES AND
COVID PANDEMIC HIT NO ONE AT NIH
SAT AND WAITED FOR THINGS TO
HAPPEN VERY INTERACTIVE WE
LAURJED AN ONLINE SURVEY OF 5
THOUSAND INDIVIDUALS STRATIFIED
BY RACE ETHNICITY AND GOES BY
THE CURB STUDY TO EVALUATE
IMPACT OF COVID-19 ON
COMMUNITIES AND PRESENTED A
COUPLE PUBLISHED PAPERS IN THE
SETTING.
SHE HAS BEEN THE -- WAS THE LEAD
IN DEVELOPING OF THE CONTRACT
THAT NIMHD HAS WITH THE
EVALUATION AT UNIVERSITY OF
WASHINGTON ON THE GLOBAL BURDEN
OF DISEASE IN US HEALTH
DISPARITIES PROJECT, WHICH IS A
COALITION OF INSTITUTES THAT ARE
BEHIND IT. ALTHOUGH, WE
CONTINUED THAT AT NIMHD.
CALVIN TROY WAS ASKED BY MONICA
WEB COOPER AND I TO SERVE AS
ACTING SCIENTIFIC DIRECTOR. WE
HAVE LAUNCHED A NATIONAL SEARCH
THAT JOB WILL BE POSTED VERY
SOON.
SOME OF YOU MAY BE REACHED OUT
TO.
THIS IS AN INFORMAL GATHERING
THAT WAS HELD BY THE DIVISION OF
INTRAMURAL RESEARCH IN THE
NATURE BUILDING PRIOR TO ANNA'S
RETIREMENT. WE WILL MISS HER.
WE CONTINUE ON THIS TRADITION.
I WANT TO ALSO DO A SHOUTOUT TO
MONICA WEB COOPER WHO WAS
RECOGNIZED AS ONE OF THE MOST
INFLUENTIAL PEOPLE OF AFRICAN
DECENT AND CLASS OF 2023 GLOBAL
TOP 100 LIST FOR HEALTH CARE
SUPPORTED BY UNITED NATIONS
INTERNATIONAL DECADE FROM PEOPLE
OF AFRICAN DECENT FROM 2015 TO
2024.
SHE IS CONSIDERED ONE OF 25 MOST
INFLUENTIAL BLACK PSYCHOLOGISTS
AND IS ONE OF MOST CITED AND
SEARCHED FOR BLACK SCHOLARS AND
THANK YOU MONICA FOR EVERYTHING
YOU DO.
>>WE ALSO WELCOME ARRIVAL OF
KARINA WALTERS FROM UNIVERSITY
OF WASHINGTON AND JOINED NIH
OFFICIALLY ON APRIL 24TH AND IS
BARELY A MONTH INTO HER NEW
POSITION AS DIRECTOR OF TRIBAL
HEALTH RESEARCH OFFICE. THIS IS
A CRITICAL OFFICE THAT NIMHD
INTERACTS WITH ON A REGULAR
BASIS AND KARINA IS AN
ACCOMPLISHED SCIENTIST AND HAS A
DOCTORAL DEGREE IN SOCIAL WORK.
SHE HAS WORKED A LOT IN SOCIAL
EPIDEMIOLOGY.
SHE IS THE FOUNDING DIRECTOR OF
THE UNIVERSITY OF WASHINGTON
INDIGENOUS WELLNESS INSTITUTE
AND CO-CHAIRED CEO AMERICAN
INDIAN ALASKA NATIVE GROUP AND
DAVID WILSON STEPPED AWAY AT END
OF 2022.
HE IS ON ASSIGNMENT TO WHITE
HOUSE COUNCIL OF NATIVE AMERICAN
AFFAIRS SINCE JANUARY OF THIS
YEAR AND WELCOME KARINA WITH
WHOM WE HAVE HAD AT LEAST AN
INITIAL MEETING AND PIVOTING TO
A COUPLE HIGHLIGHTS OF OUR
BUDGET. ONE IS LOAN REPAYMENT
PROGRAM THAT CONTINUES TO BE AN
IMPORTANT PROGRAM ACROSS NIH.
AS MANY ARE AWARE.
WE ARE IN THE MIDST OF TRYING TO
CREATE AN EVALUATION OF THE
NIMHD SUPPORTED LOAN REPAYMENT
PROGRAM.
WE HAVE FROM THE BEGINNING OF
THIS PROGRAM AND ABOUT A LITTLE
OVER 20 YEARS AGO.
AUTHORIZED TO PROVIDE LOAN
REPAYMENT TO INDIVIDUALS WHO
PROPOSED TO DO HEALTH
DISPARITIES RESEARCH. THAT IS
THE PURPLE COLUMN THAT IS HIGHER
NUMBERS ACROSS THE YEARS.
THIS IS 2018 TO 2022.
THE BLUE BAR IS FOR CLINICAL
RESEARCH FOR INDIVIDUALS FROM
DISADVANTAGED BACKGROUNDS AND
THIS IS IN ANY AREA OF RESEARCH
NOT RELATED ONLY TO DISPARITIES
IN -- IT IS DRIVEN BY MOSTLY
SOCIOECONOMIC DISADVANTAGE BUT
NOT EXCLUSIVELY AND YOU CAN SEE
OVER THE YEARS IS A SMALL NUMBER
THAT RECEIVES THE AWARDS ON THAT
BASIS.
IN 2019, THE LOAN REPAYMENT
PROGRAM WAS OPENED UP ACROSS NIH
AND NOW ANY INSTITUTE AT NIH IS
EMPOWERED TO FUND LRP GRANTS IN
HEALTH DISPARITIES NOT JUST
NIMHD AND PROGRAMS TRACKED IN
REPRODUCTIVE HEALTH AND IT IS
IMPORTANT THAT OUR SUCCESS RATE
DOUBLED AS A CONSEQUENCE. WE
WEREN'T GETTING ALL APPLICATIONS
BUT WERE ONLY GETTING HALF OF
THEM AND LOOK FORWARD TO
CONTINUING TO SUPPORT THIS
IMPORTANT PROGRAM AND
DEMONSTRATE ITS BENEFIT.
WE HAVE BEEN VERY PROUD OF THE
INCREASE IN AWARD RATES.
THIS IS A DIRECT CONSEQUENCE OF
OUR COMMUNITY THAT IS SENDING US
BETTER QUALITY GRANTS THAT ARE
GETTING BETTER REVIEWS.
YOU CAN ARGUE WHILE REVIEW
COMMITTEES ARE GETTING MORE
DIVERSE, PERHAPS.
THAT IS MAYBE ONE REASON AS
WELL.
ALSO, MOST IMPORTANTLY, NIMHD
RECEIVED DISCRETIONARY INCREASE
IF IN BUDGET FROM CONGRESS IN
FISCAL YEAR 21 AND FISCAL YEAR
22. WE CAN SEE EARLY STAGE AND
ESTABLISHED INVESTIGATORS
SUCCESS RATES IMPROVED OVER THIS
TIME. WE WOULD LIKE TO KEEP
THEM CLOSE TO 20% AND WILL SEE
HOW WE DO IN FISCAL YEAR 23.
A FEW LEGISLATIVE UPDATES TO
KEEP YOU ABREAST OF THE MAJOR
EVENTS. THIS YEAR'S
APROPRIATION'S HEARINGS WERE
DIFFERENT AND HOUSE OPTED TO
ONLY HAVE DR. TAING YBACK AS
ACTING DIRECTOR PRESENT OR
ATTEND HEARING WITH DIRECTOR OF
SENATOR'S DISEASE CONTROL AND
PREVENTION AND DIRECTOR OF
ADMINISTRATION FOR STRATEGIC
PREPAREDNESS AND RESPONSE AND
FOR THE MOST PART WAS A
PROFESSIONAL AND RESPECTFUL
HEARING AND ALTHOUGH THE NUMBER
OF TOPICS RELEVANT TO NIH
DISCUSSED WERE OF COURSE LIMITED
SINCE THERE ARE THREE MAJOR
AGENCIES PRESENT AT THAT
HEARING.
THE SENATE APPROPRIATIONS LAID
RATE HHS SUB-COMMITTEE HEARING
WAS HELD MAY 4TH AND DR. TAYBACK
ACCOMPANIED BY PRINCIPLE DEPUTY
NCI AND DR. LOUIE DRAND GORDON
NIH AND DR. [INDISCERNIBLE] AND
NIDA AND DR. NORA AND THIS HAS
BEEN PATTERN NOW FOR A NUMBER OF
YEARS NIH DIRECTOR ATTENDS WITH
WHOEVER OTHER DIRECTORS MEMBERS
OF CONGRESS ASK FOR AND ARE
LARGER INSTITUTES OR A VERY HOT
TOPIC THEY WANT TO DISCUSS.
AS A SMALLER INSTITUTE, WE DON'T
PARTICIPATE IN THAT PROCESS THAT
IT USED TO BE THAT EACH
INSTITUTE DIRECTOR WOULD ATTEND
ONE OF THESE APROPRIATION
HEARINGS IN THE NOT THAT DISTANT
PAST THAT HASN'T HAPPENED FOR
WELL OVER A DECADE NOW. MANY
ACTIVITIES NOT AS MUCH AS 2020
OR 2021. WE HAD A BRIEFING -- A
COUPLE BRIEFINGS ON CLIMATE
CHANGE AND HEALTH INITIATIVE AND
DR. WOYCHEK FROM NATIONAL
INSTITUTE OF ENVIRONMENTAL
HEALTH SCIENCES AND DR. BIANKI
AND CHILD HEALTH AND IN APRIL WE
WENT WITH RICKWAY CHECK AND DR.
GARY GIBBINS AND SHANNON ZINC TO
BRIEF THE HOUSE AND SENATE
APPROPRIATIONS LABOR HHS
COMMITTEE STAFF ON CLIMATE
CHANGE HEALTH INITIATIVE AND
BOTH CASES TALKING TO THE STAFF
OF THE CHAIRS OF THE COMMITTEE
OR COMMITTEE ITSELF OPPOSED TO P
MEMBERS OF CONGRESS.
THEN MONICA WEB-COOPER AND I
BRIEFED SENATE HEALTH EDUCATION
PENSION COMMITTEE ON LAST FRIDAY
ON THE RECOMMENDATIONS FROM THE
ADVISORY COMMITTEE OF THE
DIRECTOR WORKING GROUP ON
DIVERSITIES SUBGROUP ON
INDIVIDUALS DISABILITIES AND
WERE ACCOMPANIED IN THAT WITH
MARIE BERNARD WHO IS CHIEF
OFFICER FOR SCIENTIFIC WORKFORCE
DIVERSITY AT NIH AND MARIE AND I
CO-CHAIRED THE WORKING GROUP
COMMITTEE ADVISING THE STEERING
COMMITTEE ON DIVERSITY.
NEW STAFF ARE CONSTANTLY THE
LIFE OF NIH AND NIMHD CONTINUES
TO HIRE AND GROW POST THE ISSUES
AROUND THE PANDEMIC.
I USED TO SAY, WELL, IF YOU ARE
IN THE ROOM, STAND UP SO PEOPLE
CAN ACKNOWLEDGE YOU AND THINK
THAT VERY FEW OF THE INDIVIDUALS
ARE HERE.
IF YOU ARE, PLEASE DO SO.
INTRAMURAL RESEARCH KENNEDY BEAU
WEN IS NEW STAFF OPERATIONS
COORDINATOR THAT IS ONE OF
ANNA'S LAST DECISIONS TO BRING
IN ADDITIONAL SUPPORT STAFF
VINCENT IS A BIOSTATISTICIAN AND
DIVISION OF CLINICAL HEALTH
SERVICES RESEARCH RECRUITED
DOLLY WHITE WHO WORKS REMOTELY
AND DOLLY IS NOT HERE AND IS A
FAMILY PHYSICIAN FROM GEORGIA.
DIVISION OF COMMUNITY HEALTH
POPULATION AND SCIENCE
SUCCESSFULLY RECRUITED ANGELA
FERNANDEZ.
ANGELA, IF YOU ARE HERE,
WELCOME. THANK YOU. LOOKING
FORWARD TO WORKING WITH HER ON
MANY ISSUES AND DIVISION OF
INTEGRATIVE BIOLOGICAL AND
BEHAVIORAL SCIENCES RECRUITED
GABRIEL LIVE CAME FROM NCI. ARE
YOU HERE TODAY? WE DIDN'T SEE
YOU. WE WILL PRAISE YOU AT
ANOTHER TIME AND A NUMBER OF NEW
STAFF HIRES INCLUDING CAITLIN
ALEC WHO IS AN IT SPECIALIST FOR
GROWING IT SHOP AS WE WILL HEAR
LATER THIS MORNING FROM PATTY
AND JAMIE WHO IS A MANAGING
ANALYST THAT IS WORKING IN
OFFICE OF ADMINISTRATIVE
MANAGEMENT AND WHAT MAKES
EVERYTHING WORK FOR THE
INSTITUTE IN THE OFFICE OF
EXTRAMURAL RESEARCH ACTIVITIES,
MICHELLE PHILLIPS A GRANTS
MANAGEMENT SPECIALIST AND OFFICE
OF SCIENCE POLICY PLANNING
EVALUATION AND REPORTING OR O SP
RA FOR SHORT GEORGE IS A PROGRAM
ANALYST AND WELCOME ALL OF THE
NEW STAFF A FEW HIGHLIGHTED
EVENTS THIS SPRING THE
LEKTSDTURE SERIES ON PUBLIC
HEALTH LEADERSHIP HAD A THIRD
ANNUAL EVENT.
THIS IS REALLY AN ENGAGING AND
FUN LEARNING EXPERIENCE MONICA
WEBCOOPER IS MAGNIFICENT
MODERATOR AND HAS PROVIDED
INFRASTRUCTURE AND SU SUPPORT
MAKES THE CHOICE WHO THE GUEST
LECTURER WILL BE AND IS DONE IN
THE MONTH EXPRESSING
APPRECIATION FOR ASIAN AMERICANS
AND NATIVE HAWAIIAN PACIFIC
ISLANDER HERITAGE MONTH THAT IS
LABEL FROM FEDERAL GOVERNMENT
AND GEFLT THIS YEAR IS DAVID WHO
WAS 43RD COMMISSIONER OF NEW
YORK CITY DEPARTMENT OF HEALTH
AND MENTAL HYGIENE AND WE HAD A
GOOD CONVERSATION THAT IS DONE
IN A FIRESIDE CHAT FORMAT THAT
IS VERY LIVELY AND PARTLY
PERSONAL AS WELL AS TALKING
ABOUT IMPORTANT ISSUES AND LOOK
FORWARD TO THIS AGAIN NEXT YEAR.
WE HAD TWO IMPORTANT SCIENTIFIC
WORKSHOPS IN THE MONTH OF MARCH
TO START OFF. MARCH 1 AND 2ND,
A MEETING ABOUT HEALTH
DISPARITIES AMONG SEXUAL AND
GENDER MINORITIES WORKSHOP AND
MULTIPLE GOALS IS A VERY
EXPANSIVE TOPIC AND SPEND A FAIR
AMOUNT OF TIME DISCUSSING ABOUT
DATA SOURCES AND MEASURES AND
HOW HARD IT IS TO GENERATE DATA
WHEN NO STANDARDIZED APPROACH
ASKING QUESTIONS OR WHERE
QUESTIONS ARE NOT ASKED AND
DON'T ASK AND DON'T KNOW
APPROACH TO SCIENCE DOESN'T
WORK. YOU KNOW?
SO, TO ADDRESS DISPARITIES
GATHERING TOGETHER EXPERTS TO
DISCUSS WITH US AND WITH NIH
STAFF ON THESE ISSUES AND, OF
COURSE, LOOKING AT ISSUES
RELATED TO MECHANISMS OF
PATHWAYS CAUSING THESE
DISPARITIES AND POTENTIALLY
MITIGATOR REDUCED THEM THROUGH
INTERVENTIONS.
I WAS ABLE TO -- WELL, I ADD
ADDRESSED THE GROUP AND LISTENED
INTO A FAIR NUMBER OF
CONVERSATIONS AND PRESENTATIONS
PARTICULARLY IN THE FIRST DAY
AND CAN SAY IT WAS A PRODUCTIVE
ACTIVITY.
WE ALSO HELD AT THE END OF THE
MONTH A WORKSHOP, CLINICAL
RESEARCH WORKSHOP ON
PARTICIPATION AND CLINICAL
RESEARCH.
THIS WAS A VERY LIVELY EVENT AND
VERY WELL ATTENDED. OVER 1,000
PEOPLE REGISTERED AND ENDED UP
WITH ABOUT 800 PEOPLE ON THE
ZOOM OR ON VIRTUAL
PARTICIPATION.
BOTH WERE HELD VIRTUALLY. IT IS
TO REALLY LOOK AT EVIDENCE-BASED
BEST PRACTICES TO INCREASE
INCLUSIVE PARTICIPATION IN
CLINICAL RESEARCH STRATEGIES AND
REITERATE THIS WAS DRIVEN BY,
YOU KNOW, BY THE NOW 30-YEAR
EFFORT OF NIH TO HAVE
INVESTIGATORS REPORT ON RACE
ETHNICITY OF THE HUMAN
PARTICIPANTS IN THEIR STUDIES AS
PART OF THE APPLICATION THAT
EVERYONE IS FAMILIAR WITH THAT
CHART.
RACE AND ETHNICITY, AGE, SEX, OR
GENDER AND BIRTH PLACE IN TERMS
OF US AND NOT US ARE REQUIRED TO
BE REPORTED.
WE HOSTED OTIS BRAWLEY AS A
KEYNOTE SPEAKER AND NIH ACADEMIC
SCIENTISTS PRESENTING AND NIH
PLANNING GROUP WAS WIDELY
REPRESENTED AND THIS IS
AVAILABLE.
IT IS -- IT DOESN'T LOOK LIKE A
VIDEOCAST.
SO, BUT THE UNITE INITIATIVE HAD
A NUMBER OF LISTENING SESSIONS
AT THE BEGINNING OF THE
INITIATIVES AND BEGINNING IN
DECEMBER OF 2020.
AND THROUGH FEBRUARY OF 2021.
THE SUMMARIES OF LISTENING
SESSIONS WERE QUITE EXTENSIVE.
IT IS AVAILABLE IN A SUMMARY
REPORT. THE LINK IS ON THE
SLIDE. THIS IS A PUBLIC
DOCUMENT.
ANYONE CAN DOWNLOAD IT AND
REVIEW IT AT YOUR LEISURE.
IT SUMMARIZES THESE FIVE MAJOR
AREAS AND STATE OF EQUITY AND
BIOMEDICAL SCIENCES AND
CHALLENGES IN CAREER PATHWAYS
AND WORKFORCE AND PRACTICES AND
POLICIES AS BARRIERS TO EQUITY
AND CHALLENGES IN HEALTH
DISPARITIES RESEARCH AS WELL AS
CHALLENGES IN ADDRESSING
HEALTHCARE EQUITY AND HEALTH
OUTCOMES THAT WAS EXPANSIVE
BASED ON THE CHARGE THAT WAS
PRESENTED BY FRANCIS COLLINS AT
THE TIME. IT INTENTIONALLY
INCLUDED THE ISSUE OF
DISPARITIES AND WASN'T ONLY
TALKING ABOUT WORKFORCE ISSUES
WITHIN NIH AND OUTSIDE OF NIH.
UNITE IS VERY EXPANSIVE AND VERY
AMBITIOUS IN ITS SCOPE
ENCOURAGING EVERYONE TO TAKE A
LOOK AT THIS SUMMARY.
UNITE HAS CONTINUED WITH ITS
ACTIVITIES THAT IS A CONCRETE
PRODUCT OF UNITEE COMMITTEE
EFFORTS AND MANY INVOLVED WITH
THIS AND FUNDING OPPORTUNITIES
THAT PROMOTE EQUITY AND
PARTICULARLY FOCUS ON REWARD
MECHANISM THAT SUPPORT HEALTH
RELATED RESEARCH AND HEALTH
SCIENTISTS SIGNIFICANTLY
CONTRIBUTING TO DIVERSITY,
EQUITY, AND INCLUSION IN ACING
CRESSIBILITY NOT CURRENTLY
SUPPORTED THAT IS AN OPPORTUNITY
FOR A SCIENTIST FOCUSED ON DEIA
ISSUES IN HIS OR HER CAREER.
TO REALLY GET R01 FOR THEIR
SCIENCE WHILE CONTINUING DIA
ACTIVITIES AND COMMON PATH IS
SOMEONE DOES DIA FOR A WHILE AND
YOU HAVE TO DO REAL WORK AND
RESEARCH AND GET A GRANT AND
THEY GET A GRANT AND GET SOMEONE
ELSE TO TAKE OVER THAT ACTIVITY.
THIS IS AN OPPORTUNITY FOR
PEOPLE THAT ARE REALLY GOOD AT
BOTH TO BE ABLE TO DO BOTH IF
THERE IS AN INSTRUMENTATION
FUNDING OPPORTUNITY AND THERE IS
ALSO A STRENGTHENING RESEARCH
OPPORTUNITIES FOR NIH STRONG
INITIATIVE HAS BEEN PUBLISHED
THAT IS CLEAR AT THIS COUNCIL
WHEN WE MET LAST YEAR.
JUST A SHOUTOUT TO THE ONGOING
WORK OF SEAL. THIS IS A EXAMPLE
FROM A CAMPAIGN IN PUERTO RICO
TO ENCOURAGE UPTAKE OF BOOSTER
VACCINE.
MOST OF THE POPULATION WANTS TO
FORGET ABOUT COVID.
SO, LIKE IT HAPPENED AND WAS
THERE AND TERRIBLE AND LET'S GO
AND MOVE ON.
THE COVID-19 AND RESPIRATORY
INFECTIONS ARE GOING TO
APPARENTLY CONTINUE TO BE WITH
US. WE WILL SEE WHAT HAPPENS
THIS WINTER EVEN THOUGH CURRENT
TRANSMISSIONS ARE LOW. PEOPLE
ARE GETTING INFECTED AND
VACCINES WILL WORK FOR
PARTICULARLY OLDER ADULTS TO
SAVE LIVES AND THERAPY WILL
CONTINUE TO IMPROVE ALL CURRENT
THERAPY IS ALSO EFFECTIVE.
LET'S NOT FORGET ABOUT COVID AT
ALL.
HIGHLIGHT OF WHAT IS COMING WITH
THE COMMUNITY-LED HEALTH EQUITY
STRUCTURAL INTERVENTIONS OR
CHESSY'S INITIATIVE THAT IS A
COMMON FUND PROGRAM. I'M A
CO-CHAIR ALONG WITH SHANNON ZENK
FROM NURSING AND DR. JOSH GORDON
FROM MENTAL HEALTH AND OFFICE OF
RESEARCH OF MENTAL HEALTH AND
THOSE CENTERS ARE BEING REVIEWED
THROUGH A REGULAR MECHANISM AND
U24, I BELIEVE.
WE WILL PUBLISH A FUNDING
OPPORTUNITY ANNOUNCEMENT
SOMETIME IN THE NEXT COUPLE OF
MONTHS FOR THE ACADEMIC HUBS.
THIS IS THE HEART AND CORE OF IT
THIS EFFORT OF THE COMPASS
EFFORT. IT IS GOING TO FUND UP
TO 25 COMMUNITY ORGANIZATIONS TO
DO STRUCTURAL INTERVENTIONS TO
REDUCE DISPARITIES.
ON A VARIETY OF TOPICS AND WE
MADE THE INITIAL SORT OF
SELECTION OF ORGANIZATIONS THAT
WILL START INITIATE DISCUSSIONS
ABOUT HOW THEY WILL POTENTIALLY
PROCEED. THIS IS BEING DONE
THROUGH OTHER TRANSFER
MECHANISMS AND IS NOT A GRANT OR
NOT A CONTRACT. IT HAS BEEN
WIDELY USED IN SOME NIH
PROGRAMS.
CO, FOR EXAMPLE, AND ALSO ALL OF
US. WE WILL SEE WHAT HAPPENS.
STAY TUNED SOME TIME AGAIN THIS
SUMMER. WE EXPECT TO MAKE THIS
ANNOUNCEMENT THAT IS A MAJOR
SHIFT OR PIVOT INNOVATION FOR
NIH TO UNDERTAKE AND PLEASE
TODAY BE GRATEFUL FOR STAFF
WORKING HARD MOSTLY FROM COMMON
FUND AND NATHAN STINSON AND
OTHER STAFF FROM NIMHD ARE
INVOLVED AND WE RECENTLY ALSO
SAW THE GRADUATION OF THE 7TH
NIMHDDDK RUN AND FOLLOW AND
SEAN, DID YOU GET
[INDISCERNIBLE]. I'M SURE I
DIDN'T SAY IT RIGHT. A DISTRICT
CLINICAL DIRECTOR OF THE
HOSPITAL IN RWANDA. THIS IS A
FAIRLY INNOVATIVE PROGRAM IF IN
ONE OF OUR -- JUST A SMALL
HANDFUL OF INTERNATIONAL
FOOTPRINT PROGRAMS.
IT IS DRIVEN BY ANNE SUM NER HAD
HERE IN THE GRADUATION I WASN'T
ABLE TO ATTEND IN PERSON AND
MONICA WEB COOPER AND CALVIN
TROY ARE ALSO THERE ALONE WITH
NINA SHORE AND MICHAEL COWS IS
SCIENTIFIC DIRECTOR FOR NIDDK
AND WE PROVIDE SUPPORT FOR
FELLOW AND ANNE PROVIDES
LABORATORY AND SUPPORT FOR
RESEARCH. SHE HAD A PROGRAM ON
DIABETES AND METABOLIC
ABNORMALITIES IN AFRICANS IN
WASHINGTON, DC VIRGINIA AREA AND
IS A DIVISION INTRA MURAL
PROGRAM AND AGREED TO CONTINUE
IT. THERE ARE ISSUES AND
ORIGINAL INSTITUTION IS ONE
FOUNDED BY PAUL FARMER AND YOU
ARE ALL AWARE THAT HE DIED
UNEXPECTEDLY AND THERE HAD BEEN
CHANGE IN LEADERSHIP AT THE
INSTITUTION IN RWANDA. WE HAVE
BEEN ABLE TO WORK THOSE THINGS
OUT AND ARE MOVING FORWARD
CONTINUING THE PROGRAM UNTIL THE
NEW DIRECTOR HAS AN OPPORTUNITY
TO REFLECT ON IT AND YESTERDAY
WE HEARD ABOUT THE SHARE PROGRAM
AND SCIENCE COLLABORATIVE FOR
HEALTH CARE ARTIFICIAL
INTELLIGENCE BIAS REDUCTION AND
CAN WE DO SOMETHING ABOUT THE
BAR THAT COULD BE DECREASED?
I CAN'T READ OR LOOK AT THE
SLIDE FULLY. IF YOU CAN MAKE IT
GO AWAY OR DIMINISH.
I WON'T USE IT.
THANK YOU. SHARE -- GO BACK. I
WILL DO THAT.
WE ARE GET IT RIGHT IT IS AN
EFFORT MADE POSSIBLE BY OFFICE
OF DATA SCIENCE AND STRATEGIES
ASSESSED IN THE OFFICE OF THE
DIRECTOR WORKING CLOSELY WITH
SUSAN OVER THE LAST COUPLE YEARS
THEY HAVE REALLY TAKEN TO HEART
DEFICIENCIES IN THIS SPACE IN
DATA SCIENCE IN TERMS OF BIAS
AND DISPARITIES IN HOW CURRENT
DIRECTION OF THE FIELD WAS GOING
TO POTENTIALLY EXACERBATE HEALTH
DISPARITIES IF WE DIDN'T
INTERVENE AND A NUMBER OF
ACTIVITIES AT NIH HAVE BEEN PUT
IN PLACE TO ADDRESS THAT.
OUTSIDE OF NIMHD IT THIS IS
INTERNAL TO BUILD CAPACITY IN
POPULATION SCIENCE AND DR. DURAN
IS LEAD ON THIS FROM OUR
PERSPECTIVE ALONG WITH LUCA AND
OTHER STAFF WITH ADMINISTRATION
AND COMMUNICATIONS AND PROMOTING
USE OF CLOSE COMPUTING SETTING
TO ADDRESS ISSUES OF HEALTH
DISPARITIES AND ALGORITHM BIAS
AND INCREASING REPRESENTATION
AND FOSTER OF PARADIGM SHIFT AND
CONCEPTUALIZING THINGS AND
LOOKING AT WAYS TO MITIGATE BIAS
AND NUMBER OF ACTIVITIES
PROBABLY THE MOST -- IT IS NOT
RESPONDING TO ADVANCING.
THERE WE GO. AT LEAST THAT
MOVED IT.
THERE HAVE BEEN MONTHLY
THINK-A-THONS AND VIRTUAL
MEETINGS THAT ARE REALLY MEANT
TO BE HANDS-ON, INSTRUCTIONAL,
AND CLOUD COMPUTING AND FOLKS ON
RESEARCH AND IDEA IS TO HAVE A
PLATFORM THAT PEOPLE CAN HAVE
TOOLS TO LOOK AT DATA AND IS ALL
A WORK IN PROGRESS.
I'M BASICALLY PRESENTING IT TO
MAKE PEOPLE AWARE AS WE MOVE
MORE INTO THIS SPACE AND INVEST
MORE RESOURCES IN PARTICULARLY
IN TERMS OF HUMAN RESOURCES AND
ALSO OTHERS TO BUILD THIS
CLOUD-BASED PLATFORM.
WE HAD A MEETING OF CLINICAL
RESEARCH EDUCATION AND CAREER
DEVELOPMENT.
THIS IS A FAIRLY UNIQUE PROGRAM
FUNDED BY NIMHD TO EXPAND
CAPACITY OF CLINICAL RESEARCHERS
AT THE INSTITUTIONS THAT ARE OF
LOWER RESOURCES.
THESE ARE THE CURRENT AWARDEES
AND MOR HOUSE UNIVERSITY OF
PUERTO RICO AND UNIVERSITY OF
MEDICINE AND SCIENCE AND ARE
OFFICIALLY BY WAIT SEPARATE FROM
UNIVERSITY OF CALIFORNIA SYSTEM
NOW AND STATE UNIVERSITY OF NEW
YORK DOWN STATE IN HEALTH
SCIENCES UNIVERSITY.
SO, THE 36 CURRENT SCHOLARS
ALMOST UNIVERSALLY
UNDER-REPRESENTED MINORITY AND
MOSTLY AFRICAN AMERICAN AND
LATINO AND IS REALLY AN EXCITING
MEETING.
I COULDN'T STAY FOR THE WHOLE
THING AND HERE, THE
INVESTIGATORS PRESENT AND THE
IMPORTANCE THAT THIS SUPPORT
STRUCTURE THAT IS DONE THROUGH
NR25 MECHANISM THAT SAID
KAITIONAL SUPPORT. IT IS NOT
THE SAME AS A FELLOWSHIP.
IT IS A BOOST CERTAINLY TO GET
MORE CLINICIAN SCIENTISTS INTO
THESE INSTITUTIONS THAT IS OFTEN
THE CHALLENGE BEING THAT THEY
ARE PULLED IN DIRECTION OF
SERVICE OR TEACHING THAT IS
DEPENDING ON THEIR DISCIPLINE.
WE HELD A -- I THINK A
FIRST-EVER EVENT WITH THE
NATIONAL EYE INSTITUTE THAT IS A
SCIENTIFIC WORKSHOP ON VISION
HEALTH EQUITY AND AT LEAST ONE
OF THE COUNCIL P MEMBERS WAS
THERE AND DR. NEIL COMMON THAT
WAS CHAIRED BY THE FORMER CHAIR
OF OPHTHALMOLOGY AT UCSF AND IT
COMES FOR DISPARITIES
INVESTIGATED FROM UNIVERSITY OF
MIAMI AND I WAS THERE FOR PART
OF THE SESSION THAT WAS A GOOD
WAY TO GET INTERACTION BETWEEN
HEALTH DISPARITIES SCIENTISTS
AND VISION NEI RESEARCHERS AND
ARE A NUMBER OF OPPORTUNITIES IN
AREAS THAT ARE COMMON IN A
PUBLIC HEALTH INTEREST AND
THINGS LIKE GLAUCOMA AND
CATARACT SURGERY AND ACCESS TO
THERAPIES AND DIAGNOSIS IN
THERAPY AND ALSO BASIC THINGS
LIKE REFRACTORY ERRORS AND HOW
MANY PEOPLE HAVE ACTUALLY NOT
CORRECTED THEIR REFRACTORY
ERRORS AND THAT IS A NOVEL IF
UNDERSTANDING FOR ME AS WELL AS
OTHER MORE SYSTEMIC DISEASES
EFFECTING VISUAL LOSS AND
NATIONAL EYE INSTITUTE IN THE
SMALLER INSTITUTE CATEGORY AND
ON LARGER SIDE OF THE GROUPS AND
MIKE HAS BEEN A GREAT PARTNER
FOR NIMHD.
WE ALSO HAD AN ANNUAL MEETING.
THEY ARE ALL IN PERSON OF THE
RESEARCH CENTERS AND MINORITY
INSTITUTIONS THAT WAS HELD HERE
IN BETHESDA, APRIL 12TH TO 14TH.
ALL GRANTEES ARE BROUGHT
TOGETHER. I THINK FOR THE FIRST
TIME IN A SMALLER -- IN A -- IN
A GROUP SETTING, THE
PARTICIPANTS AND LEADERS OF RCMI
PROGRAM MOST IMPORTANTLY SAW THE
POTENTIAL THAT WE COULD ACTUALLY
LEVERAGE THIS NETWORK OF LESS
RESOURCED INSTITUTIONS AND 21
FUNDED INSTITUTIONS AND 14, I
BELIEVE, ARE SBHCUS AND ARE TWO
IN PUERTO RICO AND IS A VERY
POWERFUL CAPACITY BUILDING
RESEARCH POTENTIAL NETWORK THAT
NIMHD MANAGES.
TAKING THIS PROGRAM AND PROGRAMS
FUNDED BY NATIONAL INSTITUTE OF
GENERAL MEDICAL SCIENCES WE
ACCOUNT FOR PROBABLY 3/4 OF ALL
OF THE FUNDING FOR THESE LESS
RESOURCED TO MINORITY SERVING
INSTITUTIONS OR HN AND HBCUS
THAT IS REALLY AN IMPORTANT AND
VALUABLE PROGRAM TO NOT ONLY AT
THE INSTITUTE BUT TO SCIENCE AND
FIELD AND OUR COMMUNITIES AND
THE DIRECTORS OF THE GENERAL
NIGMS DR. [INDISCERNIBLE] AND
NHLBI DR. GARY GIBONES PRESENTED
DEPUTY DIRECTOR FOR NIDA AND
WILSON PRESENTED AND LEADERSHIP
IS THERE AND CHIEF OFFICER
SCIENTIFIC WORKFORCE DIVERSITY
MARY BERNARD PRESENT THE ALSO
AND DIRECTORS FOR NIMHD MET WITH
THE UNIVERSITY PRESIDENTS THAT
INTENDED INCLUDING THE PRESIDENT
OF [INDISCERNIBLE] AND ALSO
PRINCIPLE INVESTIGATORS AND IN
SOME CASES IN ABSENCE OF THE
PRESIDENT, THE PROVOST OR
RESEARCH OR VICE PRESIDENT --
VICE PROVOST FOR RESEARCH WERE
PRESENT AT THAT MEETING.
WE HAD A VERY GOOD CONVERSATION
ABOUT MANY TOPICS THAT ARE
RELATED TO THE COMMON ISSUES.
LET ME DELVE INTO A FEW SCIENCE
HIGHLIGHTS.
I START WITH THIS TO ILLUSTRATE
2 POINTS IN THE NEXT FEW SLIDES.
FIRST OF ALL, THIS IS A -- THIS
IS -- I'M SHOWING YOU RATE OF
COVID ASSOCIATED DEATHS PER
100,000 IN THE UNITED STATES.
WHAT HAPPENED IN 2020 AND 2021
AND 2022 IN THE PRELIMINARY
REPORT FROM THE CDC PUBLISHED IN
MMWR EARLIER THIS MONTH.
FIRSTLY, YOU SEE THAT CHILDREN,
ALTHOUGH SOME DEVELOPED SEVERE
DISEASES AND SOME DO DIE. THEY
HAVE A VERY, VERY LOW MORTALITY
RATE FROM COVID-19.
NOT QUITE AS LOW AS FROM
INFLUENZA BUT IN THE SAME RANGE.
YOU CAN SEE I DON'T SHOW ALL AGE
GROUPS HERE. IT STEPS UP
SOMEWHERE IN THE MID-30S THAT
THINGS BEGIN TO INCREASE.
WE SAW DRAMATIC IMPROVEMENT IN
2022. REAL BURDEN OF MORTALITY
FROM THIS DISEASE IS IN OLDER
ADULTS.
SOMEWHERE ALONG THE PANDEMIC,
PEOPLE LOST TRACK OF THAT. EVEN
THOUGH AT THE BEGINNING I THINK
IT WAS A HIGHLIGHT AND WAS A
GENERALIZED CONCERN.
WE WERE OBSESSED WITH ISSUES
ABOUT CLOSURES AND NONCLOSURES
AND MASKS AND NO MASKS AND
SCHOOLS AND VIRTUAL WORK
ENVIRONMENTS.
AND YOU CAN SEE BURDEN OF
MORTALITY THAT IS BEING
DRAMATICALLY HIGHER FOR OLD
PERSONS OLDER THAN 65 AND
ESPECIALLY OVER 75 THAT HAS
IMPROVED THAT IS ANOTHER POINT
AND HOW MUCH BETTER THINGS HAVE
GOTTEN.
THIS IS A SUCCESS STORY THAT WE
HARDLY EVER LIKE TO TALKING
ABOUT SUCCESS IN OUR FIELD. WE
LIKE TO ALWAYS FOCUS ON PROBLEMS
AND SHOULD REALLY OCCASIONALLY
SAY, HEY, WE DID GOOD HERE.
AND WE -- YOU KNOW, WE RESPONDED
TO THIS CRISIS IN A UNIQUE WAY.
ALSO, MALES HAVE HAD A MUCH
GREATER BURDEN OF DISEASE AND IN
FEMALES AND IS PROBABLY MOSTLY
RELATED TO WORKFORCE ISSUES AND
EXPOSURE RATHER THAN ANY OTHER
FACTOR.
BY RACE ETHNICITY, WE, AGAIN,
SEE A LEVELING OF THE DEATH
RATES IN A WAY THAT I, AGAIN,
WAS PLEASANTLY SURPRISED.
WE HAVE SEEN DATA SINCE THE FALL
OF 2022 WHEN CDC FIRST PUBLISHED
THIS AND NEW YORK TIMES DID A
BETTER JOB OF PRESENTING THE
DATA AND REPORT BASED ON CDC
DATA.
AND AMERICAN INDIAN AND ALASKA
NATIVES ARE CONSIDERABLY HAD
HIGHER THAN THE US GENERAL
POPULATION IF YOU WANT TO REFER
TO WHITES IN THAT REGARD.
WE SEE LATINOS AND HISPANIC'S
ARE SAME AS WHITES ESSENTIALLY
AND AFRICAN AMERICANS ARE BLACKS
AND NATIVE HAWAIIAN AND PACIFIC
ISLANDERS ARE HIGHER THAN WHITES
BUT CLEARLY NOT AT 2 TO 3 TIMES
MORTALITY RATE WE SAW EARLY ON
IN THE FIRST COUPLE YEARS OF THE
PANDEMIC AND SAY WHY IS
COMMUNITY BURNED OUT AND LEVEL
OF IMMUNITY INCREASED AS MORE
AND MORE PEOPLE GOT INFECTED AND
WE GOT PEOPLE ALSO VACCINATED
AND VACCINATION RATES FOR LATINO
HISPANICS AND BLACK AFRICAN
AMERICAN COMMUNITIES WERE
IDENTICAL OR VERY SIMILAR TO
WHITE GENERAL POPULATION.
AND IN THAT CLOSE TO 70% RATE AS
OF LAST FALL.
AND THIS IS A DEFINITION THAT
INCLUDED AT LEAST A THIRD DOSE
OF COVID-19 VACCINE.
TAKE HEART IN THIS. IT IS NOT
OVER.
IT IS CERTAINLY PROGRESS AND WE
SHOULD BE PROUD OF HOW OUR
COMMUNITIES RESPONDED AND
PROFESSIONAL COMMUNITIES
RESPONDED IN 2020.
IT HAD AN IMPACT IN JUST TO
REFLECT ON THAT FOR A MOMENT.
LAST WEEK NIMHD ALONG WITH
COLLABORATORS FROM JOHN'S
HOPKINS IN THULE YAIN IN THEIR
GROUP PUBLISHED A PAPER IN JAMA
ECONOMIC BURDEN OF RACIAL/ETHNIC
AND INTERNATIONAL HEALTH
EQUITIES IN US IN 29 AND
RACIAL/ETHNIC MINORITY GROUP
ANALYSIS WE ESTIMATED THE COST
THAT THE UNITED ECONOMY OF $451
BILLION.
BECAUSE OF THIS, A LOT OF IT IS
I WILL SHOW YOU IS RELATED TO
PREMATURE MORTALITY AND DOING
ANALYSIS BY COLLEGE DEGREE BEING
A REFERENCE POINT AND HAVING A
FOUR-YEAR COLLEGE DEGREE AND NOT
JUST SOME EXPOSURE AND COST TO
THE COUNTRY IS OF COURSE
MUTUALLY EXCLUSIVE AND OVERLAP
$978 BILLION PUTTING IT AS AN
ESTIMATE COST TO THE UNITED
STATES, IT IS ALMOST A TRILLION
DOLLARS THAT IS OUR DEFICIT.
RIGHT?
WE CAN CERTAINLY MAKE SOME
EFFORT AT REDUCING THIS TO
IMPROVE THE STATE OF THE US
ECONOMY.
THAT WOULD BE THE -- THE PURPOSE
OF DOING THIS KIND OF ACTIVITY.
WE ARE CONTINUING THIS PROGRAM
AND THIS PROJECT. IT IS A
CONTRACT.
WE WILL BE DOING AREA LEVELS BY
COUNTY IN DIFFERENT RACIAL AND
ETHNIC GROUPS THAT ARE MORE
GRANULAR RESULTS OF THE DATA
AND, AGAIN, USING COMPARISON TO
AN ASPIRATIONAL GOAL GENERATED
BY HEALTHY PEOPLE IN 2030 HOPING
WE WOULDN'T GET TO RATE FOR ON
ONE GROUP BUT REALLY AIM FOR A
GOAL IN MORTALITY. YOU CAN SEE
EXCESS PREMATURE DEATH COST
PUTTING ACCEPTED VALUE TO EXCESS
PREMATURE DEATH TO THAT, THAT IS
HOW THE DOLLAR AMOUNT GETS
CALCULATED AND LOSS LABOR MARKET
PRODUCTIVITY AND EXCESS MEDICAL
COSTS DRIVING THIS IN OTHER
POPULATIONS.
THIS IS A STUDY THAT, AGAIN, IS
-- I CAN'T READ THE REFERENCE
HERE.
BUT, IT IS A JOURNAL OF
COMMUNITY EPIDEMIOLOGY, I THINK.
I THINK LIFE EXPECTANCY AND
HEALTH-RELATED QUALITY OF LIFE
IS STRONG PREDICTOR OF PREMATURE
MORTALITY AMONG BLACK AMERICANS
AND COMMUNITY PSYCHOLOGY. THANK
YOU.
IT IS A LOW RATE AND PHYSICAL
ACTIVITY IN HEALTHY EATING ARE
CONTRIBUTORS TO THIS AND IS A
STUDY OF ALMOST 300 BLACK
AMERICAN ADULTS RECRUITING
ONLINE TO COMPLETE A BEHAVIORAL
ASSESSMENT YOU CAN SEE SAMPLE
SIZE DISTRIBUTION
CHARACTERISTICS IN THE SENSE OF
COMMUNITY BUFFERS AGAINST
ADVERSE EFFECTS OF LOW PHYSICAL
ACTIVITY.
WONDERING, YOU KNOW, WE HAVE
ALWAYS TALKED ABOUT SORT OF, YOU
KNOW, WHAT THE SENSE OF
COMMUNITY COHESION IS AND SOCIAL
CAPITAL AND SOCIAL COHESION AND
HOW DO YOU MEASURE THAT?
THERE IS WAYS OF DOING IT AT
MACRO LEVEL AND WE NEED ON THE
GROUND MICRO LEVEL DATA TO
REALLY UNDERSTAND WHAT IT MEANS.
MANY OF US REALLY THINK THAT
SOMEWHERE ALONG THE LINES THAT
OVER THE COURSE OF LAST 50 OR 60
YEARS SOME -- MANY OF THESE OF
THIS COHESION HAS BEEN BROKEN
AND THAT IS PART OF THE
DIAGNOSIS THAT IT LEADS TO
DISPARITIES AND WE MOSTLY
FOCUSED ON INDIVIDUAL BEHAVIOR
AND INDIVIDUAL RISKS THAT
DEVELOP AS OPPOSED TO STRUCTURAL
OR SOCIAL ONES THAT I THINK IS
WHERE IMPORTANCE OF THIS KIND OF
RESEARCH KIND OF COMES IN.
LET'S SEE IF I CAN MAKE IT
ADVANCE.
HERE WE GO.
THIS IS A STUDY ABOUT BLACK
LGBTQ+ INDIVIDUALS AND THEIR
COMMUNITY'S ASSOCIATION OF
EXPERIENCE WITH DISCRIMINATION
AND OPPRESSION IN JACKSON
MISSISSIPPI AND IN ATLANTA JORNL
YA AND MANY HAVE BEEN IN ATLANTA
AND DON'T KNOW HOW MANY VISITED
JACKSON THAT IS A UNIQUE
ENVIRONMENT IN THE STATE OF
MISSISSIPPI.
AND I THINK THAT THE -- THE
CHALLENGES OF BEING BLACK AND
AFRICAN AMERICAN AND A MEMBER OF
THE LGBTQ+ COMMUNITY SHOULD NOT
BE UNDERESTIMATED IN THAT IN
JACKSON OR ANY COMMUNITY FOR
THAT MATTER OR WASHINGTON DY AS
WELL AND THAT IS MARI STUDY
LOOKING AT INDIVIDUALS ASSIGNED
MALE AT BIRTH AND REPORTED TO
HAVING RELATIONS WITH OTHER MEN
AND WHETHER OR NOT THEIR
DISCLOSURE TO PARENTS AND FAMILY
AND IT WAS PROTECTIVE OR NOT.
THE IDEA IS, YOU KNOW, YOU DON'T
TELL BECAUSE YOU GET
DISCRIMINATED AGAINST. YOU GET
MARGINALIZED IN YOUR FAMILY
VERSUS BEING ACCEPTED AND
SUPPORTED INDEPENDENT OF WHO YOU
ARE OR WHAT YOU DO.
LISTENING TO THIS FROM A
QUALITATIVE PERSPECTIVE IS I
THINK REALLY IMPORTANT IN
LISTENING TO EXPERIENCES FROM
COMMUNITIES OF COLOR AND MEMBERS
OF THE LGBTQ+ COMMUNITY
REPORTING ON WHAT RELATIONSHIP
IS WITH THEIR PARENTS WAS LIKE
AND WHETHER THEY SHARED OR NOT
AND HOW THEY DID IT AND WHAT THE
REACTION WAS.
THIS IS AN EMPIRIC EVIDENCE AND
DISCLOSURE MAY ACTUALLY BE
BENEFICIAL IF PARENTS ARE
ACCEPTING FOR BOTH BLACK MEN WHO
HAVE SEX WITH OTHER MEN AS WELL
AS BLACK TRANSGENDER WOMEN THAT
I THINK IS MAYBE -- OH, YEAH.
WELL, WE WILL EXPECT THAT.
AGAIN, GENERATING THIS COMES
FROM A K AWARDEE GENERATING
EMPIRIC EVIDENCE IS IMPORTANT.
INTERGENERATIONAL NEIGHBORHOOD
MOBILITY.
SOME MIGHT RECALL THE MOVING
OPPORTUNITY STUDY WHERE
INDIVIDUAL FAMILIES WERE MOSTLY
SINGLE MOTHER LED FAMILIES THAT
ARE RANDOMIZED TO USUAL HERE IS
YOUR HOUSING VOUCHER AND GO FIND
A PLACE WHERE YOU NORMALLY DO
HOUSING VOUCHER.
YOU HAVE TO GO TO THESE
NEIGHBORHOODS.
THEY WERE MORE SOCIO
ECONOMICALLY ADVANTAGED THAT
DEMONSTRATED BENEFITS FOR THE
MOTHERS AND PARTICULARLY THE
GIRLS AND DAUGHTERS AND RESULTS
ON -- LONG-TERM RESULTS ON BOYS
WERE MORE MIXED AND IDEA OF
LOOKING AT STRUCTURAL CHANGE AND
WHAT IS GOOD ABOUT A
NEIGHBORHOOD LEADING TO BETTER
COUNT IF IN THE GENERAL
COMMUNITY?
THIS IS A CHALLENGE THAT I THINK
MANY OF US HAVE GIVEN SOME
THOUGHT TO.
THERE IS, I THINK, REASONABLE
EVIDENCE TO SAY THAT IT IS NOT
GOOD FOR PEOPLE TO LIVE IN
SEGREGATED ADVANTAGE AND TALKING
ABOUT ETHNIC ENCLAVE PROTECTIVE
FOR NEW IMMIGRANT AND GENERALLY
MARGINALIZING COMMUNITIES
THROUGH SEGREGATION HAS BEEN AN
EFFECTIVE TOOL AT PROMOTING
DISPARITIES AND OPPOSITE IS TRUE
THAT THERE ARE DATE THAW I WOULD
SAY THAT MIXED NEIGHBORHOODS ARE
ACTUALLY GOOD WHOLE IDEA OF
INTEGRATION POPULAR IN 1960S AND
70S ARE IMPOSED WITH FEDERAL
GUIDELINES AND FEDERAL WALL AND
IS EVIDENCE THAT, THAT IS IN THE
LONG-TERM A BETTER WAY OF HAVING
AN ENVIRONMENT. THERE IS
SOCIOECONOMIC DIVERSITY WITHIN
COMMUNITIES NOT UNIVERSAL SORT
OF GROUPINGS.
THIS IS, I THINK, ONE CHALLENGE
IN URBAN ENVIRONMENTS WE NEED TO
CONSIDER THAT IS MOBILITY STUDY
BETWEEN BLACKS AND WHITE AND
PARENT/CHILD PAIRS FOLLOWING A
PANEL OVER TIME AND WHITE
CHILDREN WERE MORE LIKELY TO
INHERIT HIGHER NEIGHBORHOOD
RATINGS FROM PARENTS COMPARED TO
BLACK CHILDREN AND ALL QUARTILES
BLACK CHILDREN MOVED UP IN
SMALLER MAGNITUDES AND IN WHITE
COUNTERPARTS THAT I THINK THE
POINT OF WE WILL LET THE
IMPROVEMENT OF ALL OF THE
SOCIETY IMPROVE THE LOT OF THE
MOST DISADVANTAGED GROUPS THAT
HAS A LIMIT TO WHAT IT CAN DO IN
TERMS OF NEIGHBORHOOD AND
INHERITANCE OF PROPERTY THAT IS
A MECHANISM OF GENERATING EQUITY
OR WEALTH FOR FAMILIES.
THIS IS ANOTHER STUDY PUBLISHED
IN JOURNAL OF NATIONAL CANCER
INSTITUTE AND FOUND ON
DIFFERENTIAL DIAGNOSIS ON
UTERINE CANCER THAT WE SHOULD
SAY IS A CANCER WITH NO
RECOMMENDED ROUTINE SCREENING
GUIDELINE AND USUALLY PRESENTS
IN WOMEN PERIOR POST MENOPAUSAL
AND UTERINE BLEEDING IS COMMON
PRESENTATION AND PRIOR TO
MENOPAUSE UTERINE BLEEDING IS
IDEOLOGISTS STANDARD EVALUATION
AND SOMETIMES REQUIRE SURGICAL
INTERVENTION AND POST MENOPAUSAL
BLEEDING IS ABNORMAL NEEDING TO
BE EVALUATED AND CONTEXT RELATED
TO THAT IS A VERY LARGE STUDY OR
DATA SET IDENTIFYING WHITE OR
BLACK PATIENTS FROM MEDICAID IN
[INDISCERNIBLE] AND WITH
ABNORMAL UTERINE BLEEDING AND
HOW QUICKLY OR EFFECTIVELY WAS
THE EVALUATION AND QUESTION IS
IF YOU MISS IT RIGHT AWAY HOW
IMPORTANT IS THAT IT IS THREE
MONTHS LATER AND DEPENDS ON
DIAGNOSIS IN CANCER IN
PARTICULAR ANDUTE IRINE CANCER
IS NOT PARTICULARLY FAST GROWING
BUT ALSO DOESN'T JUST SIT THERE
AND DO NOTHING LIKE SOME CANCERS
FOR A LONG TIME.
NOT GETTING A DIAGNOSTIC
PROCEDURE THAT IS A FAIRLY
STRAIGHTFORWARD PROCEDURE TO
TAKE A LOOK OR DO AN IMAGING
STUDY AND DO A DIRECT
VISUALIZATION AND BIOPSY OR SITE
LOGICAL EXAMINATION OF THE
UTERINE LINING AND DIAGNOSTIC
PROCEDURE DOES REQUIRE
RADIOLOGISTS TO INTERPRET IT IN
TERMS OF UTERINE THICKNESS AND
NOT SOMETHING OFFICE OR
EMERGENCY DEPARTMENT CAN DO BUT
HAS TO BE DONE BY RADIOLOGISTS
AND DOCUMENT MORE EXPERIENCED IN
DELAY AND TIMED FIRST DIAGNOSTIC
TESTS UNDERWEPT MORE EVALUATION
AND MANAGEMENT VISIONS BEFORE
DIAGNOSIS AND NOT GETTING TO
DIAGNOSIS AND THEREFORE THERAPY
THAT MOST OF THE TIME WILL BE
HERE SURGERY AND IN THESE
PATIENTS PARTICULARLY TO TREAT
THEIR CURE EARLIER IN CANCER.
AGAIN, THIS IS WITHIN MEDICAID
AND SOCIOECONOMIC DISADVANTAGE
IS NOT PRESENT.
THERE WE GO.
A STUDY FROM A GROUP I THINK
THAT I HEARD THIS PRESENTED IN A
MEETING A WHILE BACK THAT WAS
JUST PUBLISHED IN NICO TEEN
TOBACCO RESEARCH IN LOOKING AT
WHETHER OR NOT WE CAN EVALUATE
SMOKING CESSATION IN AMERICAN
INDIAN ADULTS LOOKING AT
NICOTINE MET ABOLIE RATIO AND
INDEPENDENCE EXPOSURE AND
PROBLEM IS NICOTINE IS A DRUG
AND VOLATILE AND TAKES TWO HOURS
TO GET METABOLIZED AND CHANGED
INTO CODING AND HARD TO MEASURE
IN THE LIVER AND PROCESS IS
DRIVEN BY SPECIFIC ALLELES.
IN THE METABOLISM AND NICOTINES
ARE PSYCHOACTIVE DRUG IN TOBACCO
USE AND MARKER FOR EVERYTHING
ELSE THAT IS BAD.
ALL OF THE PHARMACOLOGICAL
THERAPIES OF SMOKING OF TOBACCO
USE HAVE BEEN DIRECTED AT
NICOTINE ISSUES AND NICOTINE
DEPENDENCE. IS THERE WAYS WE
CAN TELL IF SOMEONE IS MORE OR
LESS LIKELY TO RESPOND EITHER TO
NICOTINE REPLACEMENT AND
ORIGINAL CESSATION DRUG OR
CESSATION AID THERAPY TO VERANA
CLEAN OR APPROACH REON OR
MEDICATIONS WITH EVIDENCE FOR
SUPPORT OF IT THIS AND IDEA OF
LOOKING AT NICOTINE METABOLITE
RATIO USED IN RESEARCH AND
OPTION TO DO THIS AND
MECHANISTIC STUDY TO SEE IF THAT
COULD INFLUENCE BASED ON
METABOLISM OF NICOTINE AND THOSE
METABOLIZING NICOTINE MORE
QUICKLY HAVE GREATER DEPENDENCE
ON CIGARETTES AND ON COMBUSTIBLE
TOBACCO REPLACING NICOTINE THAT
BODY WANTS TO KEEP IT AT CERTAIN
LEVEL IN DEPENDENCE MODEL OF
SMOKING AND PREFERRING NICOTINE
REPLACEMENT AND IN THIS
PARTICULAR STUDY OF AMERICAN
INDIAN ADULTS AND ALASKA NATIVE
ADULTS AND AREA THAT I THINK IS
OF INTEREST TO MEDIAN TO OUR
LAB. WE ACTUALLY WILL BE
WORKING WITH DATA FROM THE
HISPANIC COMMUNITY HEALTH STUDY
TO LOOK AT SOME QUESTIONS AND
NOT ON CESSATION AND JUST IN
GENERAL MECHANISMS OF NICOTINE.
PROCEED DISCRIMINATION
ALLOSTATIC LOAD IN JOURNAL OF
AMERICAN GERIATRICS SOCIETY AND
STUDY THAT LOOKS AT WHETHER IF
YOU PROCEED WITH DISCRIMINATION
REFLECTING IN CHRONIC STRESS AND
ALLOSTATIC LOAD AND WILL CAUSE
MORTALITY AND WHETHER OR NOT
ALLOSTATIC LOAD COULD BE USED AS
A MEDIATOR IN LARGE DATA SETS
THAT IS IN HEALTH AND RETIREMENT
STUDY AND LARGE COHORT STUDY
FOUNDED ON INSTITUTE OF AGING
WITH REPRESENTATIVE SAMPLES OF
WHITES AND BLACKS AND LATINO
HISPANIC'S OVER THE AGE OF 50
THAT ARE ORIGINALLY RECRUITED
GETTING A -- THE RECRUITMENT
GETS MAINTAINED.
MEASURE OF PROCEEDING WITH
DISCRIMINATION AND RELATIONSHIP
WITH MORTALITY AND STATE TRACK
AS WELL AS ALLOSTATIC LOAD THAT
YOU GET FROM BIOLOGICAL AND
PHYSICAL EXAM VISITS AT THE
BEGINNING OF THE STUDY.
AND DISCRIMINATION INDUCES MORE
STRESS AND ELEVATES
CARDIOVASCULAR METABOLIC AND
INFLAMMATORY MARKERS RELATED TO
MORTALITY AND NOT SHOWING DIRECT
RELATIONSHIP WITH MORTALITY IN
THIS STUDY, PATHWAYS ARE THERE.
OKAY. RESILIENCE IN COVID
RELATED BEHAVIORAL HEALTH AMONG
LATINOS.
THIS IS A STUDY LOOKING AT
RESILIENCE IN RELATION TO
NEGATIVE HEALTH OUTCOMES
CROSS-SECTIONAL STUDY AND FEAR
OF COVID AND ANXIETY RELATED
SLEEP DISTURBANCE AND DEPRESSION
AND RESILIENCE AND COVID
EXPOSURE AND RELATED WORK IN
FINANCIAL TROUBLES AND HOME LIFE
DISTRESS ARE PRESENT THAT
INCREASES ANXIETY.
THIS IS A -- I THINK THIS IS
RELEVANT IN PART BECAUSE IT WAS
SPECIFIC TO THE TIMES AND WHAT
MANY STUDIES IN MY VIEW HAVE NOT
REALLY EVALUATED YET.
WHAT DID INTERVENTIONS DO TO
MITIGATE THIS?
I HAVE REVIEWED AND SEEN A
COUPLE OF PAPERS THAT LOOK AT
FINANCIAL HARDSHIP THAT IS
PROVOKED BY COVID AND ARE LEFT
UNEMPLOYED AND ARE UNDEREMPLOYED
AND PLACE YOU WORKED AT CLOSED
AND YOU ARE NOT PART OF AND
DON'T HAVE ANY PARTICULAR PLAN B
IF THAT HAPPEN THE THAT HAPPEN
THE PARTICULARLY IN SERVICE
SECTORS AND IN CONSTRUCTION
INDUSTRY WHERE DISPROPORTIONATE
NUMBER OF THE WORKFORCES FROM
MINORITY COMMUNITIES IN MANY
AREAS PARTICULARLY LATINOS.
AND I THINK THAT THE
INTERVENTION THAT IS ROLLED OUT
BY FEDERAL AND STATE GOVERNMENTS
THROUGH FEDERAL HEALTH WOULD
PROBABLY MITIGATE THIS.
I KNOW IT WAS VERY CHAOTIC AND
APPEARED VERY DISORGANIZED AND
WERE -- THERE WAS CHECK INTO
EVERY HOUSEHOLD OR INDIVIDUAL
WITH AN INCOME OF BELOW A
CERTAIN THRESHOLD AND AS WELL AS
EXTENDED PROGRAMS PUT IN PLACE
THAT ARE NOW BEING DISMANTLED
AND I THINK THAT IS A SECOND
QUESTION THAT WE NEED TO DO.
WE DID REDUCE CHILD POVERTY
DURING THE PANDEMIC BY 50%.
SO, THE -- THIS IS A -- I THINK
THIS IS AN AREA OF FOLLOW-UP
RESEARCH THAT IS NEEDED ON THIS.
I CANNOT ADVANCE THESE SLIDES.
OKAY. THIS IS A STUDY ON WOMEN
LIVING WITH HIV WHO EXPERIENCE
HOMELESSNESS AND HOUSING
INSTABILITY AND STUDY WAS
CONDUCTED LATENT CLASS ANALYSIS
IDENTIFYING PATTERNS OF HOUSING
SITUATIONS COLLECTING CLINICAL
DATA ON 1500 INDIVIDUALS AND
WOMEN LIVING WITH HIV FROM MIAMI
DADE COUNTY WHO THOSE WHO WERE
HOMELESS OR UNSTABLY HOUSED AND
LIVE AD LONE WITH NO MINORS
REPORTING NOT DISCLOSING HIV
STATUS WERE AT RISK OF POOR HIV
OUTCOMES RE-ENFORCING IDEA OF
ASSESSING HOUSING STATUS AS AN
IMPORTANT COMPONENT OF CARE OF
PEOPLE LIVING WITH HIV.
WE KNOW THAT LIVING WITH HIV
SHOULD NO LONGER BE CONSIDERED,
YOU KNOW, WHAT WE USED TO CALL,
YOU KNOW, A TERRIBLE OUTCOME
DEATH SENTENCE APPROACH TO A
CHRONIC DISEASE THAT IS
TREATABLE AND IF DIAGNOSED AND
TREATED YOU SHOULD BE ABLE TO
HAVE A NORMAL LIFE EXPECTANCY.
THERE WE GO.
SLEEP DISTURBANCE WITH SLEEP APP
KNEE AH AND COMPLEX COMORBIDITY
IS STUDY IN THIS AREA RELATE
TODAY CHINESE AND KOREAN
AMERICANS AND IS -- CAN YOU MOVE
THIS THING AND SLEEP DISTURBANCE
USING PATIENT-REPORTED OUTCOMES
DEFINING COEXISTENCE OF 3 OR
MORE BODY SYSTEM DISORDERS
HAVING A CHRONIC COMPLEX
MULTI-MORBIDITY.
THIS IS THE FIRST STUDY TO
EXAMINE ASSOCIATION BETWEEN
SLEEP MEASURES AND COMORBIDITIES
AMONG TWO ASIAN AMERICAN
POPULATIONS AND INCREASING
INTERVENTIONS THAT ARE NEEDED TO
INCREASE AWARENESS OF IT THIS
ISSUE.
OKAY. CAN WE MOVE THE NEXT
SLIDE, PLEASE?
NOW WE GET INTO INTRAMURAL
PROGRAM OF REPORTS.
THIS IS A RESEARCH THAT WAS IN
JAMA AND [INDISCERNIBLE] LED
THIS EFFORT WHEN HE SAW THAT
PUBLICATION EARLIER, I THINK,
THAT HAD BEEN ANY THINK IN THE
ENGLAND JOURNAL OF MEDICINE
LAMENTING HOW FIREARM RELATED
DEATHS WERE LEADING CAUSE OF
DEATH AMONG CHILDREN AND
ADOLESCENCE AND THAT REPORT
DIDN'T EMPHASIZE UNBEARABLE
DISPARITIES IF IN DATA TAKING
DATA FROM CDC WONDER DATABASE
AND MORTALITY DATA
DISPROPORTIONATE IMPACT OF
FIREARM MORTALITY ON BLACK
CHILDREN AND ADOLESCENCE
ILLUSTRATED IN THE CHART
PARTICULARLY WITH BIG INCREASE
BEGINNING IN MID 2000 AND 13 AND
14 AND 15.
YOU CAN SEE FOR BLACK NAILS
BEING DISPROPORTIONATE BURDEN.
AMONG FEMALES, IT IS LOWER
ACROSS THE BOARD.
I THINK THAT HIGHLIGHTING THIS
AS THE LEADING CAUSE OF DEATH IN
YOUTH IN BLACK YOUTH IN THIS
COUNTRY IS AN IMPORTANT POINT.
CAN YOU -- OKAY.
THIS IS A STUDY FROM THE MESA
STUDY AND MULTIETHNIC STUDY OF
ATHERO SCLEROSIS AND THIS HEART,
LUNG, AND BLOOD INSTITUTE
STUDIES DESIGNED AS A WHITE
AFRICAN AMERICAN HISPANIC LATINO
AND MOSTLY MEXICAN AND HISPANIC
LATINO AND CHINESE AMERICANS
STUDY AND INCEPTION COHORT IS
WITHOUT ANY CLINICAL EVIDENCE OF
CARDIOVASCULAR DISEASE THAT NOW
CONDUCTED A NUMBER OF SURVEYS
SINCE THE BEGINNING IN YEAR 2000
IS THE ORIGINAL STUDY.
IT IS CONTINUING AS A -- AS THEY
PLAN FOR ANOTHER VISIT. IT HAS
NOW BENEFIT OF BASELINE MEASURES
TWO DECADES AGO.
NOW LONGITUDINAL FOLLOW-UP AS
OUTCOMES ARE ASCERTAINED.
YOU CAN SEE A PRETTY GOOD SAMPLE
SIZE.
A NUMBER OF THE FUNDED
INVESTIGATORS AND EXTRAMURALLY
HAVE USED MESA DATA FOR DOING A
NUMBER OF IMPORTANT ANALYSIS.
ONE INTRAMURAL INVESTIGATORS
ELENA FORD ALSO HAD THAT
TRAJECTORY AND HAD BEEN WORKING
ON THESE.
FOCUS ON DISCRIMINATION AS A
MEDIATOR OF ADVERSE HEALTH
OUTCOMES IS INCREASED EVIDENCE
OVER THE LAST DECADE OR SO.
THIS IS A CONTRIBUTION TO THAT
EFFECT BOTH IN TERMS OF LIFETIME
AND EVERY-DAY DISCRIMINATION
EXPOSURE AND IN CARDIOVASCULAR
MORTALITY IN THIS CASE AND CAN
WE MOVE THE NEXT SLIDE, PLEASE?
THIS IS, AGAIN, A STUDY ON
COVID-19 RELATED DISCRIMINATION
AND VIGILANCE.
AND IN USING THE CROSS-SECTIONAL
SURVEY OF NATIONAL
REPRESENTATIVE EXPOSURE. WELL,
WHERE AM I?
>>NOT DOING ANYTHING.
>>GOT A LIFE OF ITS OWN.
OKAY. I THINK WE ARE IN THE
RIGHT SPACE AND NATIONAL
REPRESENTATIVE SAMPLES
EXPERIENCING COVID RELATED
INFORMATION AND WE ARE ALL
SENSITIVE TO PARTICULARLY
TARGETING OF ASIAN AMERICANS
AROUND COVID-19 THAT IS A DIRECT
EFFECT OF BLAMING FOREIGN
INTERFERENCE LEADING TO THE
COVID-19 PANDEMIC AND AS A
CONSEQUENCE OF THAT, THIS
PRESENCE OF NOT ONLY OVERT
DISCRIMINATORY ACTS BUT GENERAL
MORE SUBTLE DIRECTLY EXPERIENCED
DISCRIMINATION AND REALLY IT LED
TO ADVERSE OUTCOMES OVER TIME
AND THESE EVENTS HAPPENED IN
CITIES WE WOULD CONSIDER
TOLERANT AND HEAVILY REPRESENTED
BY COMMUNITIES LIKE SAN
FRANCISCO AND NEW YORK THAT IS A
VERY DISTRESSING DEVELOPING OVER
THE PANDEMIC AND THIS IS
PROGRESSION OF SMOKING BEHAVIOR
AND EXPOSURE TO MARKETING HAS
BEEN A MAJOR WAY THAT TOBACCO
INDUSTRY HAS MAINTAINED MARKET
FOR CIGARETTES AND THEY WERE
BANNED FROM TELEVISION AND FROM
ESSENTIALLY MANY PRINT MEDIA AND
OTHER SOURCES AND WILD, WILD
MARKET OF THE INTERNET WAS NOT
CONTROLLED OR REGULATED IN THAT
WAY. USING OR LEVERAGING THE
PAST STUDY BEING ABLE TO STUDY
THIS IN AN EFFECTIVE WAY.
WE HAVE LOOKED AT THIS A LITTLE
BIT. SEEING HOW MUCH MARKETING
ADDS TO EXPOSURES AND WHAT LEADS
YOUTH TO START SMOKING? WE
THOUGHT PARENTS HAVE SOMETHING.
NO. PARENTS HAVE VERY LITTLE TO
DO WITH THAT. FRIENDS DO. IT
IS WHAT YOUR FRIENDS DO OR SAY
OR THINK OR SAY OR WANT OR DO
THAT SEEMS TO BE HOLDING AS AN
INFLUENCER FOR YOUTH AND THEN
MARKET EXPOSURE THROUGH INTERNET
HAS BECOME MOST PROMINENT AND
DOMINANT WAY THAT THE INDUSTRY
IS TARGETING IT IN A SEGMENT AND
THEY WOULD SAY THEY DON'T TARGET
YOUTH AT ALL AND THAT IS WITH
RULES AND SALES TO TOBACCO TO
YOUTH IS QUOTE ON QUOTE ILLEGAL
AND VAPING HAS BECOME THE
MECHANISM BY WHICH MANY
INDIVIDUALS START TO SMOKE AS WE
HAVE ALSO LEARNED. I WILL
FINISH WITH A SHOUTOUT TO AJ
JOHNSON WHO IS A SCIENTIFIC
ADVISOR AND TRAINED DIRECTOR
NHMDS AND AJ ARRIVED AT NIMHD
AND JOIN RECRUITMENT OF
INSTITUTE WITH CORE AND
COMMISSION CORE AND COORDINATES
ROBUST TRAINING PROGRAM AND
MENTIONED 6 TENURE TRACT
INVESTIGATORS AND ONE SENIOR
INVESTIGATOR AND NUMBER OF POST
DOCS AND POST BACHS AS WELL AS
LARGE CAUD RAY OF SUMMER
STUDENTS WE WILL HAVE IN PERSON
THIS YEAR FOR THE FIRST TIME YOU
CAN IMAGINE THAT OUR NIMHD
PROGRAMS ARE MAGNET FOR
ATTRACTING UNDER-REPRESENTED
STUDENT AS BD TRAINEES TO OUR
INSTITUTE AND I APPRECIATE AJ'S.
THIS IS A PARTIAL PRESENCE OF
THAT. THIS IS THE FUTURE.
I WOULD LIKE TO END ON A
POSITIVE NOTE THAT ARE POST BACH
LAURET POSTER DAY AND FIRST
PERSON ON UPPER ROW IS CHELSEA
TRON A POST BACH IN MY LAB AND
SHE WILL START MEDICAL SCHOOL AT
UCSF.
ONE OF THESE YOUNG PEOPLE WAS
ALSO ACKNOWLEDGED AS AN AWARDEE
AND POST BACH OR POST BACH
LAUREATE POSTER DAY THAT WAS
REMARKABLE. THAT IS VINCENT LAMB
TO 3, 4, 4TH PERSON ON UPPER
PICTURE. CONGRATULATIONS TO ALL
OF THEM ON THEIR ACCOMPLISHMENTS
AND PROMOTING DIVERSITY ONE STEP
AT A TIME IS HOW I FEEL ABOUT IT
AFTER HAVING BEEN HERE 7 YEARS
AND HAVING THREE POST BACHS AND
POST DOCS ARE IN MY OWN LAB AND
TO SEE THAT PROGRESS IS REALLY
VERY REWARDING IN INDIVIDUAL
WORK THAT ONE DOES AND WANT TO
ENCOURAGE PEOPLE THAT KEEP
THINKING ABOUT WANTING TO COME
TO WORK FOR NIMHD AND BECOMING A
FED AS I SAY HERE. IT IS A VERY
GRATIFYING JOB DOING SCIENCE AND
PROVIDING SERVICE TO THE
AMERICAN PEOPLE AND PARTICULARLY
TO OUR COMMUNITIES OF COLOR.
THANK YOU VERY MUCH FOR YOUR
ATTENTION AND APOLOGIZE FOR ALL
OF THE TECHNICAL CHALLENGES I
HAD HERE TODAY. THANK YOU.
WE HAVE TIME FOR A COUPLE
QUESTIONS, PAUL.
FROM COUNCIL MEMBERS.
EITHER HERE OR ONLINE. THANK
YOU.
>>THANK YOU SO MUCH FOR
PRESENTATIONS. ALWAYS REALLY
INFORMATIVE AND HAVE A COUPLE
QUESTIONS THAT YOU TALKED ABOUT
CLINICAL RESEARCH INITIATIVE FOR
CLINICIANS TO TRAIN CLINICIAN
SCIENTISTS.
>>UH-HUH.
>>I FORGOT WHAT THE ACRONYM IS
NOW.
>>CRCD.
>>YEAH.
>>ARE THERE ANY OPPORTUNITIES
TO PARTNER WITH CTSA CALE 2
PROGRAMS?
I'M AN MPI OF ONE IN CHICK AGRO.
IT HAS BEEN CHALLENGING TO
RECRUIT UNDER-REPRESENTED
POPULATIONS THAT YOU HAVE SUCH
GREAT SUCCESS WITH THAT MODEL.
>>DR. BARNES, LISA, THIS IS A
WONDERFUL QUESTION.
I THINK WE BOTH HAVE TO WORK
OUTSIDE OF THIS SETTING TO MAKE
THAT HAPPEN.
THE GENEROSITY TOWARDS LESS
RESOURCED INSTITUTIONS IS
LIMITED I MENTIONED EARLIER FROM
NIH AND THIS PROGRAM IS
PARTICULARLY TARGETING, YOU
KNOW, NOT DIRECTLY BUT
INDIRECTLY LINKED TO OTHER
PROGRAMS, RCMI AND ENDOWMENT.
WE SEE THAT AS AN EXTENSION IT
WAS ESTABLISHED BEFORE I ARRIVE
AT NIMHD AND STAFF QUESTIONED
RENEWAL BEFORE I MOVE FORWARD
AND SITTING NEXT YOU TO IS A
POINT LEADER ON THIS.
I THINK IT HAS LOTS OF
POTENTIAL.
I WOULD HOPE IN MY SOMEWHAT OF A
FANTASY OR DILUTION DEPENDING
HOW YOU FEEL THAT DAY THAT
CTSA'S THROUGH FUNDING
MECHANISMS AND N CATS WOULD LOOK
TO CREATE CLINICAL TYPE OF
CENTER IN THESE RESOURCE
INSTITUTIONS THAT IS ONE WAY IN
A PARTNERSHIP OR NOT WITH ONE OF
THE -- WHAT IS IT, 70 FUNDED
CTSAS OR SO.
MANY ARE WELL-POSITIONED TO DO
THIS IF THE MECHANISM IS
PROVIDED TO ENHANCE SUPPORT.
HERE IN CHICAGO YOU CAN IMAGINE
A VERY DIVERSE ENVIRONMENT AND
OTHER CTSAS ARE BASED IN PLACES
NOT AS DIVERSE THAT WILL FACE
EVEN MORE CHALLENGE RS. THANK
YOU.
>>THANK YOU. ONE MORE
QUESTION, PLEASE.
THIS IS ABOUT THE ECONOMIC STUDY
YOU SHOW.
IS THERE -- ARE THERE ANY PLANS
TO LOOK AT RACE ETHNICITY BY
EDUCATION INTERACTIONS?
>>RIGHT.
>>WE KNOW RETURNS ON EDUCATION
ARE DIFFERENT FOR MINORITIZED
PEOPLE.
I WILL ASK 'TIL DAH WHO IS
ONLINE TO TAKE NOTE OF THAT AND
SEE WHAT WE CAN DO WITH THIS
GROUP. STUDIES HAVE BEEN DONE
ALONG LINES I SHOULD EMPHASIZE
COMPARING WHITE AND BLACK
AMERICANS NOT OTHER GROUPS AND
DAVID WILLIAMS AMONG OTHERS HAVE
DEMONSTRATED BENEFIT AND TOM
ACTUALLY ONE OF OUR
COLLABORATORS ON THIS, FIRST
AUTHOR ON THE REPORT THAT THE
ADVANTAGE OF MORE EDUCATION
AMONG AFRICAN AMERICANS AND
MEASURABLE ADVANTAGE OVER THOSE
WITH LESS EDUCATION IS ADVANTAGE
YOU GET WITH WHITE AMERICANS
MOST CLEARLY SHOWN BY COLLEGE
EXPOSURE AND COLLEGE DEGREE AND
AFTER THAT DIFFERENCES ARE VERY
SLIGHT.
IN SOME ANLAL SIS, GAP HAS
ACTUALLY BEEN WIDENED AND
ABSOLUTE BENEFIT IS THERE FOR
AFRICAN AMERICANS AND WHITE
BENEFIT IS GREATER SO GAP IS
WIDENEDS IN OTHER RACIAL/ETHNIC
MINORITY POPULATIONS AND
SUFFICIENT NUMBERS TO DO THIS
ANALYSIS THERE ARE TWO
CHALLENGES AND ONE IS LIFE
EXPECTANCY IS BETTER ALREADY.
FOR BOTH ASIANS AS A GENERAL
GROUP AND LATINO HISPANIC'S
GENERAL GROUP LIFE EXPECTANCIES
ARE BETTER CAN'T SHOW WHOLE
ADVANTAGE GOING TO COLLEGE
COMPARED TO WHITES AND STARTING
OFF WITH ADVANTAGE AND ISSUE OF
ADVANTAGE OF EDUCATION MOST
ANALYSIS HAVE BEEN FAIRLY FLAT
UNTIL RECENTLY AND SOME MIGHT BE
MISCLASSIFICATION THAT WHITE
LATINOS ARE MISCLASSIFIED AS
WHITE AND WILL COME TO END AND
WILL BE LEFT OUT OF ANALYSIS AND
MOST CLEAR ANALYSIS IS WITH
BLACK AND WHITE AND WITH OTHER
POPULATION GROUPS NATIVE
HAWAIIAN SAMPLE SIZES ARE TINY
AND IS HARD TO DO ANYTHING AND
WITH NATIONAL DATA BRINGING TO
TABLE TO SEE WHAT CAN BE DONE.
THANKS FOR THAT.
>>COUPLE OBSERVATIONS WITH
COVID-19 DATA I NOTICE WITH
CHILDREN THERE WAS A SLIGHT
INCREASE FROM 2021 TO 2022.
FIRST IS THAT SIGNIFICANT WHAT
IS GOING ON THERE ANOTHER
QUESTION THAT I GOT WAS YOU WERE
TALKING ABOUT RELATIONSHIP
BETWEEN NEIGHBORHOODS AND HEALTH
OUTCOME AND SO MUCH IN HEALTH
OUTCOME IS RELATED TO FAMILY
INCOME AND HOW MUCH DIFFERENT
WOULD THIS CONCLUSION BE
SUPPLANTING NEIGHBORHOOD WITH
INCOME?
THOSE ARE TWO OBSERVATIONS.
>>LET'S SEE IF I CAN REMEMBER
BOTH.
ISSUE WITH CHILDREN AND COVID,
YES. IT IS A TRAGEDY TO LOSE A
CHILD TO PREVENTABLE INFECTIOUS
DISEASE AND WE SEE THAT WITH
ALSO HOW MANY CHILDREN WERE
HOSPITALIZED WITH RSV THIS PAST
WINTER AND INFLUENZA REMEMBER
CAN BE DEADLY AS WELL AND YEARS
OF INFLUENZA EPIDEMICS THAT WE
HAVEN'T SEEN UNDER COVID AND
CASE RATES AND MORTALITY GOES
UP.
I PRESENTED AND EMPHASIZE THAT
IN PART BECAUSE I THINK THAT
OVERALL MUCH OF THE COMMUNITY
AND SOCIETY OVEREMPHASIZED
BURDEN ON CHILDREN AND SAW WITH
HOW LONG SCHOOLS WERE LEFT
CLOSED IN SOME COMMUNITIES THAT
RETROSPECTIVELY OR EVEN
PROSPECTIVELY ONE COULD HAVE
FIGURED OUT IT WAS MORE DAMAGING
THAN OPENING THEM UP.
I THINK THAT IS SOMETHING TO BE
OPEN ABOUT AND DAMAGE OF HAVING
BEEN KEPT OUT OF SCHOOL FOR A
YEAR OR LONGER FOR SOCIO
ECONOMICALLY DISADVANTAGED
CHILDREN IS NOT RECOVERABLE AT
ALL. IT WILL TAKE A LOT OF
EFFORT AND REASON I SHOWED THAT
BURDEN TO SOCIETY WAS VERY SMALL
IN YOUNG CHILDREN AND RISK WAS
SMALL OPPOSED TO OLDER ADULTS
THAT WHERE YES CHANGES WILL
FLUCTUATE INFLUENZA .1 AND IS A
HIGHER RATE TO KEEP MONITORING
THAT.
HOPEFULLY COVID WON'T COME BACK
WITH VICIOUS NOWS EFFECTING US
IN 2020 AND 2021 WITH OMICRON
DAYS AND.
INCOME VARIES OVER THE COURSE OF
A LIFETIME AND USUALLY PEAKS
DURING WORKING YEARS AFTER A
CERTAIN AGE YOU ARE DEPENDENT ON
MORE STAGNANT INCOME FROM
RETIREMENT DEPENDING ON EQUITY
AND WEALTH AND PRIMARY MODE IS
THROUGH VALUE OF PROPERTY FOR
THOSE PURCHASING PROPERTY
CONSISTENTLY IS REPORTED THAT IF
YOU LIVE IN A NEIGHBORHOOD
PREDOMINANTLY POPULATED BY
AFRICAN AMERICANS OR LATINOS
VALUE OF PROPERTY IS LOWER FOR
EXACT SAME PROPERTY TYPE AND
SPACE AND QUALITY THAT IS
COMPARED TO THOSE WHO LIVE IN A
PREDOMINANTLY WHITE NEIGHBORHOOD
THAT IS TRUE IN 2023.
AND THEN THAT IS INHERITANCE AND
LEGACY OF STRUCTURAL RACISM AND
REDLINING AND POLICIES THAT WERE
IMPLEMENTED IN THE COUNTRY AND
THAT LEGACY HAS NOT CHANGED.
MOST CITIES IN THE UNITED STATES
WERE SUBJECTED TO REGULATIONS IN
ONE WAY OR ANOTHER THAT HAS
CREATED A LEGACY WE ARE TRYING
TO MANAGE INCOME IS IMPORTANT
AND WE MEASURE IN HEALTH AND
ASKING QUESTIONS AND PEOPLE GET
TIRED AND DON'T WANT TO TELL YOU
AND POINTING OUT HEALTH AND
RETIREMENT SURVEYS ONE OF THE
FEW THAT GETS AT QUESTION OF
WEALTH THAT IS ONE I THINK AND
MIGHT BE ANOTHER I'M NOT
THINKING OF AS WELL.
THANK YOU.
>>FINAL TWO QUESTIONS WE HAVE.
KEN ONLINE?
>>GOING BACK TO MORTGAGE AMOUNT
DATA VIDEO AND FUNNY QUIRK IF
YOU HAVE A THOUGHT MORE 60% LESS
THAN WHITES AND 70 OR 80% OF
AMERICANS AND IS THAT CONFIDENCE
INTERVAL? USUALLY IN OUR
STUDIES THEY DO WORSE.
>>THANK YOU, KEN, FOR THAT
QUESTION. I INTENTIONALLY
IGNORED IT AND FACT YOU ASKED
MEANS I SHOULDN'T.
>>SORRY.
I DON'T KNOW WHAT IT MEANS AND
SUSPECT THAT SOME MIGHT BE IN
WHO THEY CATEGORIZE THERE THEY
WILL ROBUST GROUP AND MAYBE THEY
TOOK OUT LATINO HISPANIC'S
MAKING UP 60% OF PEOPLE
REPORTING BEING MULTIRACIAL IN
2020 AND MIGHT BE A RESIDUAL
GROUP THAT IS SELECTED FOR
BETTER OUTCOMES AND I DON'T
KNOW. WHEN THEY HAVE REPORTED
MULTIRACIAL RATES IN BEHAVIORAL
ISSUES THEY DO WORSE WITH
SMOKING AS I'M SURE YOU ARE
FAMILIAR WITH, WITH SEXUAL RISK
AND A COUPLE ALCOHOL AS WELL.
SO, IT IS CURIOUS AND I DIDN'T
DELVE INTO DETAILS THAT WAS VERY
HIGH-LEVEL REPORT. THANK YOU
FOR HIGHLIGHTING THAT.
[NO AUDIO].
MADE UP ACROSS NIH NOT JUST
NIHMD BUT COMMON FUND. ONE OF
STAFF WORKING ON THIS WAS
RECRUITED AWAY FROM NIMHD AND
OTHER INSTITUTES THAT HAPPENED
TO AS WELL AND PEOPLE LEND FOR A
TIME AND SHANNON ZENK WAS LEAD
INSTITUTE DIRECTOR INVOLVED WHO
ASKED ME AT ONE POINT WHEN
THINGS WERE MORE SUBTLE WITH RAD
XUP TO COME AND JOIN HER IN
AUGUST OF 2021 AND ALSO
COINCIDED WITH MIKE SAYER'S
RETIREMENT. WE SHAPED IT WITH
WORK GROUP AND GROUP WITH THE
COMMON FUND AND ACTUALLY HAVING
SEPARATE MEETINGS BETWEEN
CO-CHAIRS AT BEGINNING THAT
INCLUDED DAVID WILSON FROM
TRIBAL HEALTH RESEARCH OFFICE
AND WE HAD MEETINGS WITH LARRY
TABAK AND FRANCIS COLLINS TO
GIVE PRELIMINARY REPORT AND SOME
MEETINGS DIDN'T GO AS WELL AS WE
WOULD HAVE LIKED AND WE SHAPED
IT INTO WHAT WAS PRESENTED TO
DIRECTORS FOR APPROVAL.
AND THEN, YOU KNOW, GETTING
NUANCES AND DETAILS AND ALL THAT
EMERGED THROUGH MANY, MANY
DIFFERENT MEETINGS.
I FEEL WE HAVE GENERATED
EXPERTISE BEING HANDS-ON
CO-CHAIRS LOOKING AT EVERY
DOCUMENT THINKING ABOUT THE
DIRECTION.
PRINCIPLE OF FUNDING COMMUNITIES
FIRST EMERGED FROM THE PROCESS
IN THE BEGINNING AND THINK THAT
IS ONE I KEEP COMING BACK TO
THAT IS TRANSFORMATIVE AND WILL
IT INFLUENCE NIH AND DIRECTORS?
DEPENDING HOW IT GOES LOGISTICAL
OPERATIONAL CHALLENGES THAT
COULD MAKE THIS DIFFICULT AND WE
LEARNED FROM CEIL AND RAD XP NOT
GOING DIRECTLY TO COMMUNITIES.
WE HAVE TO SEE AND WILL SEE HOW
THINGS ARE AND FOLLOW UP IN A
COUPLE YEARS SEEING HOW IT IS
GOING AND GETTING STARTED AND WE
WERE EXTREMELY PLEASED WITH A
ROBUST RESPONSE AT THE SAME TIME
CHALLENGE BECAUSE OF THE FUNDING
THAT IS ONLY FOR UP TO AROUND
25. THESE ARE BIG GRANTS OR BIG
AWARDS I SHOULD SAY. THEY ARE
NOT GRANTS AND IT IS AN
EXPERIMENT THAT WE WILL SEE HOW
IT WORKS AND WHETHER IT WILL BE
A NEW PATTERN I WOULD BE
CAUTIOUS ABOUT THINKING THAT AND
THINK IT WILL DEPEND ON THESE
AND OUTCOMES AND HOPE THAT
COMMON FUND CAMPUSES ARE $400
MILLION IS THAT RIGHT NATE OVER
9 YEARS AND SO IT IS A TYPICAL
COMMON FUND PROGRAM THAT IS A
LARGE AWARD AND EMANSIVE
ALLOCATED FUNDS OVER TIME THAT I
WOULD BE CAUTIOUSLY OPTIMISTIC
AT THIS POINT. PAUL BACK YOU TO
AND THANK YOU FOR YOUR
ATTENTION.
>>I'M PATTY BRENNAN
DIRECTOR OF NATIONAL LIBRARY
OF MEDICINE AND THANK YOU FOR
BEING A TERRIFIC COLLEAGUE AND
KNOW THAT AT EVERY IC DIRECTOR'S
MEETING PERSPECTIVE OF THOSE NOT
WELL SERVED IS BROUGHT FORWARD
AND I'M GRATEFUL WITH A GENTLE
NUDGE AND SHOVE AND YOU HAVE TO
HEAR THIS IS A GOOD PARTNER
PARTNERING ACROSS NIH THAT THIS
IS WONDERFUL AND MONICA AND I
LEARNED TODAY AND WE HAVE BEEN
CLOSE PARTNERS GOING THROUGH RAD
X PROJECT AND WE HAVE GONE AND
WORKED MORE CLOSELY TOGETHER
THAN SOME OF OWN STAFF AT
NATIONAL LIBRARY OF MEDICINE AND
GIVING COMPLICATED CHARGE AND
LOOK AT DIGITAL NIH STRATEGY AND
DATA QUALITY AND INFRASTRUCTURE
AND COMMON DATA ELEMENTS THAT WE
ARE IN FOR A RIDE HERE. I WILL
TRY TO GO THROUGH YOUR -- YOU
WILL ADVANCE FOR ME?
THANK YOU. I WILL TRY TO GO
THROUGH REMARKS WITH SOME SPEED
SO WE CAN HAVE TIME FOR
CONVERSATION AND MY LSA WARNED
ME EVERYTHINGLY SAY WILL IGNORE
SOMEBODY IN THE ROOM, I'M AFRAID
AND WANT TO BEGIN IF YOU DIDN'T
TALK FAST I DIDN'T GET ANYTHING
I TALK FAST AND TOO LOUD AND IF
I TALK TOO FAST JUST WAVE THIS
IS EXCITING TIME FOR SCIENCE
BECAUSE NEVER BEFORE HAVE WE HAD
POWER FOR COMPUTING TO DRIVE
SCIENCE FOR THE FUTURE.
I WILL DISCUSS PLANNED AT NIH
AND DISCUSS HOW WE ARE
ADDRESSING DATA QUALITY THAT IS
CRITICAL WHEN YOU DEAL WITH
COMMUNITIES THAT DON'T LOOK AT
WHAT WE THINK MEAN STANDARD
DEVIATION LOOKS LIKE THAT IS
IMPORTANT PART OF MISSION AND WE
HAVE CONSIDERATIONS NEEDING
GUIDANCE FROM COUNCILS ON.
I DON'T KNOW IF YOU KNOW WE ARE
ON NIH CAMPUS AND COMING UP AND
RIGHT OUT OF BETHESDA YOU SEE
BUILDING WITH FUNNY PARABOLIC
PARABOLA AND IS A TALL BUILDING
WE HAVE SPACE AND TWO BUILDINGS
ON CAMPUS AND THREE OFF CAMPUS
AND THAT BUILDING WAS BUILT
DURING THE COLD WAR AND WE ARE
PART OF THE DEPARTMENT OF
DEFENSE AND ARMY FROM THE
HISTORY AND AROUND 1956 GENERALS
AND PUBLIC -- THEY DELIBERATELY
BUILD A BUILDING TO WITHSTAND
NUCLEAR ATTACK AND THOSE ARE
WINDOWS THAT IDEA IF A BOMB
DROPS ON PENTI GONE AND HITS
BETH ES DAH WILL HIT THE CORNER
WHERE YOU SEE THE LIGHT POLL AND
DRIVEN AROUND SIDES OF THE
BUILDING PUSHED AROUND THE TOP
AND WILL SLAM DOWN AND PULL THE
BOOKS IN GOOD IDEA AND
PROTECTING KNOWLEDGE OF PANELS
FOR FUTURE AND PHYSICS ARE WRONG
AND I DOENTS KNOW WHAT THEY
THOUGHT WOULD HAPPEN TO PEOPLE
BUT THEY WERE HOPING FOR IT --
WE PREDATED NIH.
WE STARTED OFF WITH WE WERE AN
ARMY SHIELD DIRECTOR ASKING
SURGEON GENERAL BOOKS PERIOD OF
TIME CIVIL WAR AND BECAME A
COLLECTION OF BOOKS UP TO 1968
WE WERE NATION'S LIBRARY BY
LEGISLATED MANDATE REQUIRED TO
COLLECT INFORMATION ABOUT DATA
AND MEDICINE AND TRANSMITTING IT
-- WE ALSO SAW CREATION OF TWO
RESEARCH INSTITUTES AND THEY DID
A LOT OF WORK ON BIOMEDICAL AND
ON HIGH PERFORMANCE
COMMUNICATIONS INCLUDING
SATELLITE COMMUNICATION WE HAVE
SATELLITE UPLINK FROM OUR PLACE
AND HAPPENED DURING PERIOD OF
TIME AND UNDERSTANDING BODY
THROUGH SCANS NATIONAL SCIENCE
WE HAVE SEVERAL OUTREACH
ACTIVITIES SOME MIGHT BE UNHIP
RELATIONSHIP ENVIRONMENTAL
HEALTH PARTNERSHIPS IN LATE 60S
WITH REALIZATION -- POPULATE BID
NONMAJORITY RESIDENTS AT RISK
GETTING TROUBLE WITH ACCESS TO
TOXICOLOGY INFORMATION AND
TOXICOLOGY INFORMATION SERVICES
STARTED AND CONTINUE TO THIS
DAY.
NEXT SLIDE, PLEASE.
IT IS THROUGH OUR PRODUCTS MOST
PEOPLE KNOW US PUB MED AND PUB
MED CENTRAL AND BIOLOGICAL AND
GENOMIC DATA BASES GENE BANK OR
SRI AND WE IF YOU ARE ON
LEFT-HAND SIDE WE MANAGE FROM
COUNTRY HEALTH DATA STANDARDS
BUILT FROM HOSPITALS QUALITY
MODELING CAN BE DONE AND LOAN
SERVICE AND INTERESTING THERE
ALOUD TO CHARGE BUT NOT KEEP
MONEY AND EVERY YEAR SPEND A
MILLION DOLLARS PROVIDING
SERVICE AND GIVE BACK TO THE
TREASURY I DON'T UNDERSTAND THAT
ONE AND LARGE CONSUMER
INFORMATION RESOURCE AND GIVING
INFORMATION TO PUBLIC WITH
MEDICATIONS AND CLINICAL TRIALS,
ET CETERA.
WE ARE A LIBRARY THAT SERVES
GLOBALLY THE WORLD AND MILLIONS
OF PEOPLE USE RESOURCES EVERY
DAY AND HEAVILY DEPENDENT ON
INFORMATION TECHNOLOGY IN PART
IS WHY I'M ENGAGED STRONGLY WITH
DEVELOPMENT OF STRATEGIC PLAN
FOR INFORMATION TECHNOLOGY FOR
THE CAMPUS.
NEXT SLIDE, PLEASE.
OVER THE PAST TWO YEARS WE WORK
ACROSS THE NIH TO CREATE VISION
OF DIGITAL NIH TO ACCELERATE
SCIENCE THROUGH INNOVATION AND
TECHNOLOGY AND COMPUTATION AND
TAKE A FUNCTIONAL APPROACH TO
CREATING INFORMATION TECHNOLOGY
PLATFORM AND VISION AND NEXT
SLIDE IN PART INSPIRED BY FACT
THAT IN SCIENCE AND TECHNOLOGY
ARE INSEPARABLE AND CONDUCT OF
MODERN SCIENCE REQUIRES
TECHNOLOGY WHETHER DATABASE OR
SMART PHONE CAPTURING SOMEONE
WALKING HUE THROUGH PUTT AND
COMPUTING SYSTEM YOU CAN'T
SEPARATE SCIENCE FROM
TECHNOLOGY.
NEXT SLIDE, THROUGH INTERACTION
ACROSS THE CAMPUS WE LEARNED
LOTS OF THINGS AND DID A SURVEY
OF ENVIRONMENTAL STRUCTURES MANY
ORGANIZATIONS OF OUR SIGNS AND
ROLE OF SCIENCE AND TECHNOLOGY
IS CHANGING AND WE LEARN CLEARLY
THAT ADVANCING PROMISE OF
TECHNOLOGY REQUIRES NIH CAMPUS
NEW APPROACHES TO FUNDING AND
GOVERNANCE AND HAVE TRADITIONAL
APPROACH TO NIH THOSE WHO DO
HAVE CAN AND THOSE WHO CAN'T AND
END UP WITH GREAT DEAL OF
INFORMATION SCIENCES AND GREAT
DEAL OF RISK AND SECURITY IS
PREEMINENT IMPORTANCE IN -- WE
ARE DEVELOPING THIS FROM THIS
PERSPECTIVE AND NEXT SLIDE,
PLEASE.
WE BUILT A VISION OF DIGITAL NIH
ADAPTIVE GOVERNANCE MODEL
ALIGNING INSTITUTE AND CENTER
SPECIFIC TECHNOLOGY INVESTMENTS
WITH TRANCE NIH INVESTMENTS
EQUALIZING FLOOR AND MAKING SURE
PEOPLE HAVE WHAT THEY NEED AND
CONVERSATIONS TAKING PLACE WITH
WE HAVE TO LOOK AT GOVERNANCE
AND DECISION MAKING WITH
HOLISTIC INTEGRATED PLANNING AND
HEART AND LUNG BLOOD RESEARCH
LAYS OFF IS WHERE NO ONE REALLY
UNDERSTAND AND FALSE BOUNDARYIES
TO BE GOOD DATA STORAGE AND
WOULD LIKE EVERY IC AS THEY NEED
AND PRO EPT TO BE ON FOREFRONT
OF TECHNOLOGIES RELEVANT TO
RESEARCH MISSION -- FASTER
AUTOMATED APPROACHES TO DIGITAL
TECHNOLOGY AND WE HAVE 4,000
EMPLOYEES AND STAFF MEMBERS AT
NIH MAKING SURE THEY GET PAID ON
TIME DESPITE THIS THAT IS A
CHALLENGE TO INFORMATION
TECHNOLOGY AND AMAZED HOW MUCH
WE HAVE PAPER CARRYING AROUND
AND AROUND. NEXT SLIDE, PLEASE.
FRAMEWORK DEFINING HIGH
CAPABILITIES AND WHAT WE NEED TO
DO FOR SCIENCE AND SCIENTIFIC
MANAGEMENT THAT IS COMMON
AINSTITUTES AND CENTERS RATHER
THAN TAKING INSTITUTE AND CENTER
APPROACH TO BUILDING STRATEGIC
PLAN WE TAKE FUNCTIONAL APPROACH
WE HAVE THREE KEY FUNCTIONS WE
DO ON THIS CAMPUS MANAGING
EXTRAMURAL RESEARCH THAT GOES
END TO END FROM SOLICITING NEW
APPLICATIONS TO EVALUATING THEM
TO GRANTING FUNDING AND CLOSING
GRANTS HUGE OPERATION AND BEING
ADDRESSED MANY PEOPLE INVOLVED
ACROSS THE NIH AND LOCAL CULTURE
DRIVING INSTITUTES AND CENTERS
TO DO THIS SLIGHTLY DIFFERENTLY
AND MOVING TOWARDS STREAMLINED
END-TO-END PROCESS AND ARE
DEPENDENT ON TECHNOLOGIES
LARGELY AND WALKING IT DOWN
CENTER DRIVE THIS SHOULDN'T BE
HAPPENING ACROSS THE ENTIRE
ENTERPRISE LOOKING AT THINGS
LIKE SECURITY AND WORKFORCE
DEVELOPMENT AND ANALYTIC TOOLS
RESOLVED ON ENTERPRISE NOT
INDIVIDUAL LEVEL AND NEXT THREE
SLIDES NEXT SLIDE, PLEASE.
I WILL SHOW YOU WHAT EACH OF THE
TEAMS BEGIN TO WORK ON
CAPABILITIES FOR EXTRAMURAL
MANAGEMENT FUNDAMENTAL PORTFOLIO
MANAGEMENT TOOL AND GIVING
TECHNOLOGIES TO IMPLEMENT
CRITICAL POLICIES COMPUTING
COMPLIANCE AND FRANKLY FRAUD AND
USING FEDERAL DOLLAR PROPERLY
AND INCORPORATE LEARNING TO
ALERT CLINICAL TRIALS PROCEEDING
IN A TIMELY FASHION AND DO WE
HAVE RESEARCH IN ONE AREA THAN
ANOTHER AND DO WE HAVE RIGHT
REVIEWERS LOOKING AT RESEARCHERS
AND EXPECT THE FUTURE IN
RIGHT-HAD HAND COLUMN CUTTING
EDGE DIGITAL PLATFORMS FROM
PORTFOLIO MANAGEMENT TO TRAN
EXTEND THIS AND WE HAVE MORE AND
MORE SHARED PROJECTS COMMON FROM
PROJECTS INSTITUTE SPECIFIC
SOLUTIONS DON'T WORK AND WE WANT
TO REDUCE RESEARCHER AND STAFF
BURDEN IN THE COMMUNITY CHAL
TOEFRNG RESEARCHERS IS DATA
MANAGEMENT AND SHARING PLAN AND
PROVIDING WITH TOOLS TO
PARTICIPATE IN THAT STREAMLINE
PLANNING AND TRACKING ACROSS
GRANTS LIFE CYCLE AND IN PROGRAM
WE ARE KERNELED ABOUT INTRAMURAL
INVESTIGATORS UNDERSTANDING WHAT
IS GOING ON AND ASKING FOR
PORTFOLIO ALLOWING TO CONNECT
WITH OTHERS WITH RELATED DATA
AND RESEARCH AREA EXPANDING
INTRAMURAL -- COMMONLY USED
SCIENTIFIC SOFTWARE INSTEAD OF
BUYING 27 COPIES OF SAME
LICIENCE THAT GETS EXPENSIVE AND
TOOLS SUPPORTING CLINICAL TRIAL
MANAGEMENT AND HEARING ABOUT
ENTERPRISE ABOUT NEED TO IMPROVE
CLINICAL TRIALS MANAGEMENT FROM
STANDPOINT MANAGING AT NIH IN
ADDITION TO SUPPORTING COMMUNITY
AND HAVE DEMAND INSATIABLE
DEMAND COMPUTING POWER FOR LARGE
COMPLEX DATA SETS AND WHEN
MAKING INVESTMENTS ON RIGHT-HAND
SIDE AND -- RESEARCHERS CAN USE
TOOLS WE HAVE TO DESIGN CONDUCT
AND MANAGE STUDIES EASILY AND
INSECURELY AND PATIENT REPORTED
NEEDS ARE REPRESENTED IN CORE OF
NIH CLINICAL RESEARCH AND DOING
GOOD WITH ELECTRONIC HEALTH DATA
AND IS NOT ENOUGH TO BRING
UNDERSTANDING AND PATIENTS
INVOLVED IN CLINICAL TRIALS ARE
AT HOME MORE THAN ON CAMPUS AND
HAVE TO FIND WAYS TO KEBLTH TO
EVERY-DAY LIVES.
NEXT SLIDE, PLEASE.
IN TERMS OF ADMINISTRATION
MOVING TO PLATFORM-BASED
ADMINISTRATIONS TAILORED TO
INSTITUTE SPECIFIC NEEDS
PROVIDING COMMON WAY OF SOLVING
PROBLEMS ONBOARDING STAFF MEMBER
AND VALIDATING TIME OFF AND
ANALYTIC VISUALATION TOOLS
ALLOWING DECISIONS TO BE MADE
CALLING TRANSPARENCY AMONG
WORKFORCE AND CONGRESS AND
LEARNING SYSTEMS TOOLS AND GUY
OR POSSIBILITY I MIGHT USE A
PROGRAM ONCE A YEAR I SHOULDN'T
HAVE TO GO THROUGH TRAINING TO
USE THAT PROGRAM BUT CALL
SOMEONE TO WALK ME THROUGH WHEN
I HAVE A PROBLEM AND MORE AND
MORE MONEY WE CAN REDUCE
INVESTMENT ADMINISTRATION AND
MORE WE WILL HAVE FOR DIRECT
SCIENCE AND REDUCE MANUAL
ADMINISTRATIVE PROCESSES ARE
KEY. NEXT SLIDE, PLEASE.
LOOKING ACROSS WHAT WE RECOGNIZE
THE NIH NEEDS AND LACKS COMMON
ARCHITECTURE WITH WELL DEFINED
STANDARDS EVERY CAN BUILD TO
GENERAL PATTERN OR FRAMEWORK ALL
IT INVESTMENTS FIT IN AND
CONNECT TO EACH OTHER INNOVATIVE
STORAGE AND COMPUTATIONAL
INFRASTRUCTURE SHARED THAT IS
INCREASINGLY COMPETENT WORKFORCE
AND TWO WORKFORCES DEVELOPMENT
HERE AND BEING SUFFICIENTLY
TECHNOLOGY SAVVY TO USE TOOLS
AVAILABLE AND WE NEED DATA
SCIENCE SCHOLARLY WORKFORCE AND
NEED A HIGH TECH INFORMATION
TECHNOLOGY GROUP THAT CAN LEAD
US TO WHERE QUANTITATIVE
COMPUTING CAN TAKE US AND
LOOKING FOR TECHNOLOGY SUPPORT
ANYWHERE OR ANYTIME WORKPLACE IN
THE FUTURE TECHNOLOGY IS PIECE
OF THIS AND MANAGEMENT STRUCTURE
IS CRITICAL AND TO HAVE
RISK-BASED IMBEDDED CYBER
SECURITY PROGRAM AND HAVE SPENT
IN LAST THREE YEARS OVER $212
MILLION TRYING TO PLUG HOLES IN
SECURE SYSTEM TO MAKE SURE WE
ARE SECURE ENOUGH TO AVOID
INTRUSION AND LEEKS OF DATA AND
CONTINUE TO HAVE COMMITMENT TO
SECURITY AND EXPECT AND MOVE
QUICKLY ESTABLISHING STANDARDS
FOR SYSTEMS INTEROPERABILITY
STANDING TO CONSENSUS PROCESS
AND MODERNIZING TECHNOLOGICAL
SOLUTIONS NEXT SLIDE WE WON'T DO
IT AT ONCE WORKING TOWARDS THE
STRATEGY FOR GOVERNANCE THAT
ALLOWS FOR LOCAL INVESTMENT AND
BROAD BASED ACCOUNTABILITY.
NEXT SLIDE, PLEASE.
THIS ENVISIONING DIGITAL NIH
BEING 5 YEAR PLAN AND EXPECT
FIRST YEAR ESTABLISHING
CAPABILITIES PORTFOLIO
DEVELOPING A ROADMAP EXAMPLE AND
THROUGH YEARS REFINING ALIGNING
AND BUILDING SUCCESS AND NEXT
SLIDE, PLEASE. WE ARE TWO
MONTHS INTO THE PROCESS.
AND WE WILL CONTINUE TO DO WORK
CULMINATING IN DEMONSTRATION
PROJECT FOR EACH TEAM AND HAVE
OVER 100NIH STAFF MEMBERS
INVOLVED IN THIS IMPLEMENTATION
PROCESS AND LEARNED IN BUILD UP
OF PLAN TO ENGAGE PEOPLE EARLY
TO GET ENGAGE THE BUY-IN.
NEXT SLIDE, PLEASE.
NEXT PROCESS IS ENVISIONING A
FUTURE OF SCIENCE EMPOWERED BY
TECHNOLOGY AND WE WON'T DO THIS
ALONE. CONCURRENTLY, NEXT
SLIDE, PLEASE.
OFTS OF DATA SCIENCE STRATEGY IS
DEVELOPING A STRATEGIC PLAN FOR
DATA SCIENCE.
THIS GRAPHIC HERE SHOWS HOW
THESE PLANS FIT TOGETHER AND
BLUE DIAGRAM IS DIGITAL NIH --
AND GREEN SHOWS YOU DATA SCIENCE
NEEDS.
DATA INSECURITY AND DATA SCIENCE
METHODS AND DATA DISCOVERY NOVEL
APPLICATIONS AND THESE FITTING
TOGETHER WITH DIGITAL NIH WITH
PIPES IN BOXES AND PLAN FOR DATA
SCIENCE IS ADDRESSING WHAT GOES
THROUGH IT WORKING HAND IN GLOVE
AND THEY HAVE DIFFERENT
EXPERTISE AND I WILL TELL YOU A
LITTLE ABOUT THE STRATEGIC PLAN
FOR DATA SCIENCE THAT IS UNDER
THE DEVELOPMENT RIGHT NOW. NEXT
SLIDE, PLEASE.
NEXT AFTER THIS. THANK YOU. IT
HAS 5 GOALS AND FIRST IS TO
INFORM TO SUPPORT NIH DATA
MANAGEMENT AND SHARING POLICY
PUTTING IN PLACE THINGS NEED
TOED R INVESTIGATORS AND CAMPUS
TO MAKE SURE POLICY IS FOLLOWED
STRONG COMMITMENT TO ENHANCING
HUMAN DERIVED DATA FOR RESEARCH
THIS HEALTH ELECTRONIC DATA AND
SUPPORT FOR INDIVIDUALS AND THIS
IS A NEW DATA TYPE FOR NIH AND
MUCH BETTER AT GENOMIC DATA THAN
HUMAN DATA AND LOTS TO WORK ON
HERE. THERE IS A COMMITMENT TO
INVESTING IN SOFTWARE
COMPUTATIONAL METHODS AND
ARTIFICIAL INTELLIGENCE WAY THAT
IS ETHICAL MAINTAINING
SCIENTIFIC RIGOR THAT NIH
REQUIRES AND FEDERATED DATA
INFRASTRUCTURE MEANING WE WON'T
BUILD A GREAT BIG DATA STORE
THAT EVERYTHING WILL BE DUMPED
INTO BUT WORK WITH WHAT IS
RELEVANT IN EXTRAMURAL COMMUNITY
TO MAINTAIN CONNECTIONS AND LAST
GOAL OF THEIRS IS STRENGTHENING
DATA SCIENCE WORKFORCE.
NEXT SLIDE, PLEASE.
CROSS-CUTTING THEMES CALLING
ATTENTION TO TWO AT BOTTOM.
ENGAGING RESEARCHERS AND
COMMUNITIES IN DATA SCIENCE.
THEY ARE LOVE THEY GOALS THAT
SOUND NICE AND TRANLSLATE THEM
INTO WHAT THEY WILL TURN INTO
FOR THIS OPERATION THAT MEANS
GOING YOBEYOND SAYING WE WILL HE
ETHICAL AI AND EVERY STEP OF
ALGORITHM TO UNDERSTAND WHERE
DATA CAME FROM AND HOW
REPRESENTATIVE IT IS AND IS
THERE BIAS IN ALGORITHM AND HOW
IS IT BEING MANAGED AND YOU CAN
DISCUSS IN DEPTH AND ASKED TO
TALK ABOUT A LITTLE OF SOME KEY
ISSUES RELATED TO DEALING WITH
DATA AND TURNING ATTENTION FOR A
FEW MINUTES TO COMMON DATA
ELEMENTS. NEXT SLIDE, PLEASE.
IT IS BUILDING QUALITY UPSTREAM
AND HAVING RESEARCHERS COLLECT
SAME CONCEPT OF DATA IN SAME
MANNER IN CONSISTENT FASHION AND
GROUP HAS DEBATED ISSUE OF
COMMON DATA ELEMENTS
PARTICULARLY COMING TO
DEMOGRAPHICS AND NIH IS
COMMITTED TO BUILDING COMMON
DATA ELEMENTS RELEVANT AND
JERMAINE TO SPECIFIC INSTITUTE
RESEARCH OR PARTICULAR
INITIATIVES AND IN ADDITION
THERE IS A PRESS RIGHT NOW.
IT IS I'M NOT FRANKLY A BIG
SUPPORTER OF IT TO BUILD CORE
COMMON DATA ELEMENT SET FOR
EVERY NIH STUDY INVOLVING HUMANS
DISCUSSING CHALLENGE OF THAT AND
IDEA IS DESCRIBING ALL HUMAN
PARTICIPANTS IN THE SAME
FASHION.
NEXT SLIDE, PLEASE.
COMMON DATA ELEMENTS ARE
ESSENTIALLY DEFINED VARIABLE
QUESTION THAT IS SEEKING
INFORMATION THAT IS ABOUT A
PARTICULAR CONCEPT PAIRED WITH A
SPECIFIED SET OF CODED
PERMISSIBLE RESPONSES THAT IS A
QUESTION AND ANSWER CONVERSATION
THAT IS COMMON TO PARTICULAR
THEMATIC AREAS OF RESEARCH OR
PARTICULAR INSTITUTES AND
CENTERS THAT COULD BE STRUCTURED
AS SINGLE DATA ELEMENT HOW IS
HEALTH STATUS TODAY OR
COLLECTION OF DATA ELEMENTS
COMBINE THE INTO A SCORE FOR
EXAMPLE PHQ9 AND COMMON DATA
ELEMENTS HAVE TWO PORTIONS.
NEXT SLIDE, PLEASE.
AN EXAMPLE I KNOW FAMILIAR TO
MANY ACROSS THE NIH WE HAVE A
CONCEPT SEX AGE RACE DISABILITY
AND HAVE DEFINITION THAT COULD
BE DEFINED IN LOTS OF WAYS AND
REMEMBER FOR EXAMPLE SEX COULD
BE DEFINED SEX TO WHICH YOU
IDENTIFY IN THIS MOMENT AND IN
THIS PARTICULAR CASE DEFINITION
IS SEX IS BIRTH AND ALLOWABLE
INDICATORS MALE AND FEMALE
INTERSECTS THIS IS INCREDIBLE TO
GET AGREEMENT ABOUT AND ONE
STUDY TEAM AND WE KNOW GOING
THROUGH RAD X PROCESS MOVING
TOWARDS COMMON DATA ELEMENTS
LEVEL OF SPECIFICITY HAS TO BE
AT THIS DEGREE. NEXT SLIDE,
PLEASE.
WE HAVE TO HAVE LEVEL OF CODING
AT THIS DEGREE AND HOW RAD XUPT
TEAM CODES THREE ASPECTS OF RACE
AND ETHNICITY ASIAN PACIFIC
ISLANDER AND WIDE RANGE OF
IDENTITIES AND THIRD TO THE
RIGHT IS HISPANIC'S NUMBER OF
OPTIONS OF ALLOWABLE RESPONSES
TO BE MADE AND TALKING ABOUT
COMMON DATA ELEMENTS IN LARGE
GROUP LIKE THIS THEY SEEM
CONCEPTUALLY NEUTRAL AND GOOD
IDEA GETTING DOWN TO COLLECTING
IN A FIELD IT GETS VERY
COMPLICATED AND NEXT SLIDE,
PLEASE.
ASKED TO MAKE NIHCD OR COMMON
DATA ELEMENT ENDORSEMENTS AND
GOVERNANCE STRUCTURE TO ALLOW
FOR REVIEW OF DATA ELEMENTS TO
BE CERTIFIED IF YOU WILL AS
RELEVANT OR APPROPRIATE FOR NIH
AND RIGHT-HAND SIDE CE
GOVERNANCE COMMITTEE IS SUBSIDY
OF TASKFORCE COORDINATING
INSTITUTE REPORTING SCIENTIFIC
DATA COUNCIL REPORTING TO
STEERING COMMITTEE AND TEAM OF
PEOPLE MAKING SURE IF NIH SAYS
THIS IS RIGHT WAY TO MEASURE
WHATEVER CONCEPT IS IT HAS BEEN
REVIEWED AND CRITERIA ARE ON
LEFT SIDE AND RELIABILITY AND
PSYCHOMETRICS, ET CETERA.
NEXT SLIDE, PLEASE.
THERE IS ENORMOUS OPPORTUNITY
AND CHALLENGE NOW WORKING ON
COMMON DATA ELEMENTS FOR OVER A
DECADE. THERE IS GREATER
INTEREST THAN EVER BEFORE AND
THIS COMMON DATA ELEMENT IS
ESSENTIAL PART OF RESEARCH
INFRASTRUCTURE AND WE RECOGNIZE
THAT WE HAVE LOTS OF DIFFERENT
RESOURCES AND INSTITUTES AND
CENTERS STILL DEFINE COMMON DATA
ELEMENTS IN LIKENESS THAT LEADS
SOMETIMES TO CONFUSION CROSSING
INSTITUTES AND CENTERS AND
DEVELOPING COMMON DATA ELEMENTS
REPOSITORY ON BEHALF OF NIH TO
HAVE A PLACE TO STORE AND
INDICATE LEVEL OF APPROVAL FOR
COMMON DATA ELEMENTS.
COMMON DATA ELEMENTS CRITICAL TO
GATHERING OF DATA AND SWITCHING
CONVERSATION TO STORAGE OF DATA
AND TALKING ABOUT LIFE CYCLE
STORAGE AND THIS GROUP HAS BEEN
CONSIDERING THIS WITHIN NIMHD
PORTFOLIO. NEXT SLIDE, PLEASE.
WORKING WITH DATA OF LIFE CYCLE
CONSIDERATIONS DATA COLLECTED
ONCE NEEDS TO BE REUSABLE AND
ACCESSIBLE IN PROTECTED AND
SECURE FASHION. NEXT SLIDE.
SO, WHAT WE ARE -- I WANT TO
PRESENT FOR YOUR UNDERSTANDING
TWO SETS OF CONSIDERATION AND
ONE IS FOR INDEX RESEARCHERS
THAT IS FIRST TIME THAT DATA IS
BEING COLLECTED AND ASK PEOPLE
TO THINK ABOUT DATA SHARING
BEGINNING AT DESIGN PHASE AND
WHERE POSSIBLE TO USE COMMON
DATA ELEMENTS SO DATA COULD BE
EASILY REUSED TO EMPLOY STANDARD
TERMS AND FORMATS FOR EXAMPLE
THIS NOMENCLATURE OR FIRE
MESSAGING STANDARD TO HAVE
INTEROPERABILITY STANDARD AND
OBTAINED REUSE THAT IS CRITICAL
FOR RAD X PROJECTS TO HELP
PEOPLE UNDERSTAND AT VERY
BEGINNING WHAT DOES IT MEAN TO
SAY YOU CAN HAVE DATA FOR THIS
STUDY AND LOTS OF OTHER STUDIES
IN THE FUTURE AND HOW DO WE HELP
PEOPLE UNDERSTAND AND ENSURE WE
ARE PROTECTING THAT?
WE NEED TO HAVE APPROPRIATE
REPOSITORIES AND INVESTIGATORS
HAS CONTROL OVER WHICH
REPOSITORY TO USE NIH IS NOT
SAYING YOU MUST USE THIS OR THAT
ONE AND NEED TO BE ABLE TO
DEPOSIT DATA. IN FUTURE
RESEARCHERS USING DATA FOCUS ON
TWO ASPECTS CAN RESEARCHERS
DISCOVER AND EVALUATE DATA
RELEVANT TO RESEARCH QUESTIONS
ENSURING THEY COMPLY WITH
EXISTING STIPULATIONS AND RIGHT
TO USE DATA THAT IS PROPERLY
SUPERVISED WRABD ACCESS
COMMITTEES COME INTO PLAY.
RIGHT NOW NIH HAS
RECOMMENDATIONS IN FOUR KEY
AREAS FIRST OF ALL
RECOMMENDATIONS FOR OPEN ACCESS
DATA REPOSITORIES THAT IS NOT
DATA ABOUT HUMANS OR NOT
CONTROLLED ATTACHING DATA SETS
TO PUB MED CENTRAL CITATIONS AND
WE CAN OR HAVE RELATIONSHIPS
WITH GENERALIST REPOSITORIES
LIKE FIGURE SHARE AND DE NOVO
CONNECTING THEM TO CITATIONS IN
PUB MED AND STRIDE INITIATIVE
AND NIH IS WORKING ON
FOORMALLIZING CONTROL AND WE
HAVE 17 DIFFERENT COMMITTEES
OVERSEEING ADJUDICATING
SECONDARY REUSE OF DATA SET
TRYING TO STREAMLINE THAT TO
MAKE IT ACCESSIBLE AND AVAILABLE
2023 DATA MANAGEMENT SHARING
PLANS REQUIRED OF EVERY RESEARCH
PROJECT NOW. ALL DATA MUST BE
MANAGED BUT NOT SHARED THAT IS
ACCEPTABLE TO PUT RESTRICTIONS
ON SHARING AND ELEMENTS
INVESTIGATOR NEEDS TO PUT IN
PLACE INCLUDING PRESERVATION
STRATEGIES AND HOW WE MANAGE
CONSENT OVERALL AND
AUTHENTICATING AUTHORIZATIONS
AND WORKING ON DATA REPOSITORIES
WHERE WILL WE KEEP THIS AND HOW
MUCH TO COST AND SPENDING $8.5
MILLION ALONE STORING DATA IN
SEQUENCE ARCHIVE AND SPENDING
$1.8 BILLION A YEAR DATA
INFORMATION AND TECHNOLOGY AND
BETTER TO MANAGE IT BETTER WE
CAN MEET OUR FUTURE.
NEXT SLIDE, PLEASE.
LET ME STOP HERE SAYING OH, DEAR
YOU CAN'T READ THIS. IF YOU
WOULD LIKE TO REACH OUT TO ME
I'M AT NATIONAL LIBRARY OF
MEDICINE AT NIH.GOV. DENNIS IS
CIO AND DATA STRATEGY FOR SUSAN
I WILL GET THIS IN WHITE SO YOU
CAN SEE THEM AND DIDN'T HIT 508
COMPLIANCE OBVIOUSLY VERY WELL.
I WILL STOP THERE AND I DON'T
KNOW IF YOU HAVE TIME FOR
QUESTIONS AND MOVING TO NEXT
SPEAKER. DR. COTTON, WHAT IS
YOUR NEXT ADVICE? I CAN TAKE
BRIEF QUESTIONS OR COMMENTS.
YES?
>>[INDISCERNIBLE].
>>SORRY THAT WAS GREAT. I HAD
TWO BRIEF QUESTIONS.
ONE IS WITH LARGE DATASETS THERE
IS OFTEN ISSUES OF PROGRAMMING.
>>YEAH.
>>YOU SHOWED COMPLEXITY AROUND
RACE. WILL THERE BE COMMON
RECOMMENDATIONS HOW TO MANAGE IN
CODE AND BE MADE AVAILABLE SO
THAT OFTEN IF YOU USE A BIG
MEDICARE DATA SET.
>>RIGHT.
>>ISSUE IS NOT GETTING SAME
DATA THAT IS MORE ABOUT HAD HOW
DO PEOPLE PRODUCE SAME ANSWERS
LOOKING AT TRYING TO DO THE SAME
QUESTION?
SECOND ONE WAS ARE THERE ANY
PLANS FOR THIS IS A DIGITAL NIH
PLAN AND ARE THERE OTHER
GOVERNMENT AGENCIES THAT
REPRESENT THE BA TO UNIFY ACROSS
AREAS WHERE LARGE DATA SETS
EXIST?
>>SURE. THANK YOU VERY MUCH.
WE WORK CLOSELY WITH VA AND NOAH
AND DEPARTMENT OF ENERGY. WE
HAVE AND THEY HAVE LARGE DATA.
WE ARE LEARNING FROM EACH OTHER.
OUR PLAN ROLLS UP INTO HHS
STRATEGIC PLAN FOR INFORMATION
AND DATA ROLLING UP INTO
TRANSGOVERNMENT PLAN. WE HAVE
FORMAL CHAIN AND FROM MY GROUP
WE HAVE LOTS PLACED AT
CROSS-GOVERNMENT TO MAKE SURE
THIS IS GOING IS FIRST ISSUE AND
SECOND IS REALLY HARD TAKING
EXISTING DATA SET LIKE MEDICARE
CLAIMS DATA OR NHANES THAT THEY
HAVE A GRAMMAR AND TERMS
ASSOCIATED AND PEOPLE DO IT IN
DIFFERENT WAYS OR THERE IS
MISSING DATA AND THEY HAVE TO DO
IMPUTATION.
WHAT WE ARE SEEING FROM THE
SCIENTIFIC SIDE THAT IS MORE
UNDER DATA STRATEGIC PLAN FOR
DATA MANAGEMENT IS DOCUMENTING
METADATA FOR ANALYTIC DATA SET
AND SOURCE DATA SET IS
TRANSFORMATION THAT INDIVIDUAL
INVESTIGATORS WHAT SHOULD BE
STORED OR MADE AVAILABLE FOR THE
FUTURE IS GRAMMAR THAT EXPLAINS
HOW I TOOK ORIGINAL DATA
TRANSFORMING IT INTO HERE THERE
IS FORMAL STRUCTURES THAT COULD
BE USED AND YOU SAW DETAIL
LOOKING AT DATA RACE AND
ETHNICITY AND TRANSFORMING OF
THAT LEVEL OF IMPORTANT RISH
KNOWLEDGE AND POTENTIAL FOR AND
DATA TO GREATER COMPOSITES
BECOMES VALUABLE TO MOST USERS
RECOGNIZING LIKE WITH INSTITUTES
AND CENTERS AT NIH. VALUE OF
DATA IS CLOSELY UNDERSTOOD BY
PEOPLE WHO COLLECT IT AND
MAINTAINING RICHNESS WHILE
ENSURING INTEROPERABILITY IS
WHERE CHALLENGE OF NEXT FIVE
YEARS WILL BE AND DON'T BELIEVE
THAT CHATGPT WILL HELP WITH THAT
BY THE WAY AND WE ARE BUILDING
METADATA STRATEGIES THAT WILL.
>>THANK YOU VERY MUCH. I'M SO
INTRIGUED BY HOW ORGANIZATIONS
LIKE YOURS ORGANIZE THEMSELVES
AND APPRECIATE THE WINDOW IN.
ONE QUESTION IS A LITTLE TO GO
OFF WHAT DR. LONG SAID ABOUT
INTERSECTION THAT YOU HAVE WITH
VARIOUS INSTITUTES.
>>YES.
>>NICHD HAS DASH AND HEARD
ABOUT DATA PORTALS AND
DEVELOPMENT AND HOW YOU KEEP OR
INTERSECT WITH INSTITUTES TO
HELP REDUCE REDUNDANCY WITH
THINGS YOU ARE ALREADY DOING.
>>I WANT TO SAY THERE IS NOT
ALWAYS GREAT ENTHUSIASM TO
REDUCE REDUNDANCY AND DESIRE TO
MAKE THINGS POSSIBLE WILL I
UNIQUE AND REDUNDANT AS THEY
COULD EVER BE PERSONAL STRATEGY
WITH THIS IS MULTI-PRONGED
APPROACH AND HAVE FORMAL ROLE
AND RESPONSIBILITIES TO HELP TO
CRAFT DIGITAL NIH PLAN AND
CO-LED THAT PROGRAM AND ADVISED
SUSAN ON THE DATA SCIENCE
STRATEGY.
I POSITIONED MYSELF OR MY TEAM
IN VARIOUS PLACES AND FRANKLY I
STRONG ARM MY IC DIRECTOR
COLLEAGUES INTO CONVERSATIONS
AND OVER THIS PERIOD OF TIME
SUSAN AND I ARE MEETING WITH 7IC
DIRECTOR COLLEAGUES MEETING WITH
[INDISCERNIBLE] WHO COME FROM
DIFFERENT INSTITUTES TALKING
ABOUT WHAT BIG DATA INVESTMENTS
ARE AND PRIORITIES AND WHAT NIH
CAN DO TO MAKE THEM BETTER AND
WHAT YOU ARE WILLING TO NOT HAVE
DONE CENTRALLY AND THAT
CONVERSATION HAS TO FRANKLY BE
HAD IN HIGH LEVEL OF CONFIDENCE
AND SECURITY THAT DIRECTOR CAN
EXPRESS IDEA AND VISION WITHOUT
IT BECOMING PUBLIC POLICY
IMMEDIATELY AND WORK WITH DR.
TAI BECK AND SHA WETS AND DR.
JOHNSON TO LOOK AT WHERE WE HAVE
POSSIBLE GOVERNANCE LEVERS AND
NOW WE HAVE BEEN WORKING WITH
DR. JOHNSON IS HEAD OF
MANAGEMENT.
AND WE NEED TO FIND A WAY TO
TRACKING EVERY DOLLAR THAT IS
SPENT ON IT EVEN IF CONTROLLED
BY NINID OR NHCID AND WHERE IT
IS SPENT AND EXPOSING IF YOU
WILL THINGS THAT COULD OR
COULDN'T BE SHARED AND IS
ANOTHER CONVERSATION WITH IC
DIRECTORS AND NIH LEADERSHIP AND
SMALL GROUP BRINGING THROUGH
GOVERNANCE PROCESS AND I LEARNED
AT NIH THAT IS EXTREMELY
CHALLENGING FOR ME AND CAME FROM
UNIVERSITY OF WISCONSIN MADISON
AND DID FACULTY GOVERNANCE AS
HIERARCH AND THOUGHT I
UNDERSTOOD THIS STUFF. NO WAY.
GOVERNANCE STRUCTURE AT NIH WE
WORK THROUGH THIS PROVIDING
COORDINATION RESPECTING LOCAL
CONTROL AND I'M GRADUALLY
PUSHING TOWARDS ENTERPRISE
THOUGHT IN THEIR INVESTMENTS
THAT IS COMING SLOWLY AND
FRANKLY IS INTEREST A COUPLE
LEVELS BELOW CIOS INSTITUTES
SAYING WHY PAYING TWICE FOR SAME
UTILITY AND BUNKER AND SAME
TOOLS AND PRESSURE IS COMING UP
AND DOWN AND WOULD HAVE TO SAY
IN 7 YEARS WOULDN'T THINK WE
WOULD GET THIS FAR. I HAVE TO
SAY IT IS COMING AND COMING
SLOWLY AND THINGS LIKE DASH YOU
REMEMBER BIOSPECIMEN AND DATA
REPOSITORIES HAVE DIFFERENT
STRUCTURES AROUND THEM THAN
SOMETHING LIKE SRI AND HUMAN
SEQUENCE DATA IS AVAIL BABLE IN
THE CLOUD FOR EVERYONE WANTING
TO USE IT. I FOUND SMALL
MEETINGS WORK BEST AND SMALL
WORKING GROUP ON HUMAN DATA AND
DATA REPOSITORY AND DATA
INVESTMENT SHARING AND SMALL
GROUP ON DATA FINANCE. I WILL
TELL YOU HOW IT WORKS OUT.
IN TERMS OF ALGORITHMIC BIAS.
>>YES.
>>I WOULD LIKE TO HEAR COMMENTS
AND THOUGHTS ON IMPORTANCE OF
WHO DATA SCIENTIST IS.
THEY ADVISED THAT CONTAINED IN
ALGORITHM IS REALLY THERE AS A
RESULT OF BIAS AND PERSON THAT
DEVELOPED IT, THE ALGORITHM.
SO, THAT IS GETTING TO THE ISSUE
OF IMPORTANCE OF DIVERSITY AND
DATA SCIENCE WORKFORCE. I WOULD
LIKE TO HAVE YOUR THOUGHTS AND
COMMENTS ON IMPORTANCE OF THAT
AND WHERE YOU THINK IT IS GOING.
>>I DON'T KNOW IF YOU SEE
ENORMOUS SMILE ON MY FACE THAT
IS A QUESTION THAT HASN'T BEEN
BROUGHT FORWARD SO CLEARLY
BEFORE THAT IS CRITICAL AND
INVESTIGATOR UNKNOWINGLY BRINGS
PERSPECTIVE INTO ANALYTICS AND
IS INSENSITIVE TO IT AND CALL
YOUR ATTENTION TO WORK OF DIANA
FORSIEJ NOW DECREASED AND IN
NIEPTIES WROTE BEAUTIFUL PIECES
ABOUT HOW WE DETERMINE AMOUNT OF
INVESTIGATOR AND SHE IS
INTERESTING IN COMPUTER
PROGRAMMERS BIAS BUILT INTO
SYSTEMS AND SHE HAS VERY
INTERESTING ETHNO GRAPHIC WORK
ON THAT.
I CALL YOUR ATTENTION TO NIST AI
FRAMEWORK AND DEVISED AI-RISK
MANAGEMENT FRAMEWORK AND IT WAS
RELEASED ABOUT A MONTH AGO.
REASON IT IT IS IMPORTANT IS IT
PROVIDES A PLAYBOOK HOW YOU
ADDRESS AT EVERY STEP ALONG THE
WAY UNCOVERING WHAT IS
CONSTITUTING BIASED AND HOW IT
WILL BE MANAGED AND EVERYTHING
WILL HAVE BIAS IN IT AND IS NO
WAY IN AVOIDING THIS AND
PERSPECTIVE IS NOT UNIVERSAL AND
WE HAVE TO BUILD AWARENESS OF
AND MITIGATION FOR BIAS AND
TELLING A CLINICIAN IN A BUSY
CLINIC YOU HAVE TO MAKE SURE AI
ALGORITHM AND TRUSTING THAT
ALGORITHM IS RIDICULOUS YOU HAVE
TO BUILD A TRAIN OF TRUST IN THE
BEGINNING AND SHOULD LEAD TO
BETTER AWARENESS HOW BIAS IS
LEADING INTO MANAGING IT.
BIAS IS A HUMAN PHENOMENON AND
MITIGATION OF IT MUST BE SHARED
BY ALL EVERY IC DIRECTOR'S
MEETING EASY TO IGNORE IT CAN'T
FIX AT END. BUILD UPSTREAM AND
PROGRAM AIM AHEAD INITIATIVE $50
MILLION INVESTED TWO YEARS AGO
TO IMPROVE CAPACITY FOR TRAINING
OF INVESTIGATORS AS WELL AS
DEVELOPING FOR RESOURCES
CAPACITY BUILDING REDUCING
HEALTH DISPARITIES AND IMPRESSED
WITH WHAT GROUP HAS DONE AND
TAKEN CONVERSATIONAL APPROACH
EVERY WEEK THERE ARE TRAINING
MEETINGS AND IDEA IS NOT TO SAY
YOU WILL BE FREE OF BIAS WHEN
GETTING THROUGH PROCESS BUT IDEA
RAISING AWARENESS HOW BIAS
ENTERS HOW TO MITIGATE IT AND
HOW IT PERPETUATES AND RISK WE
HAVE WITH AI IS ALGORITHMS ARE
MORE DRIVEN BY DATA THAN
INVESTIGATOR AND REGRESSION
MODEL ENTERING IN FACTORS YOU
HAVE GOOD IDEA WHICH SHOULD BE
ORGANIZED IN DATA SET AND
ANALYSIS RUNNING A NEURAL
NETWORK OR LARGE LANGUAGE MODEL
OVER UNSTRUCTURED DATA SET IS
NOT THE FREQUENCY OF APPEARANCE
BUT ORDER OF APPEARANCE BECOME
IN ITSELF FACTORS NOT ALWAYS
HUMAN INTERPRABLE AND AT THIS
POINT ABL TO UNDERSTAND BIAS
FROM PHILOSOPHICAL PERSPECTIVE
NOT JUST SOCIAL BIAS BROUGHT BY
COGNITIVE EXPERIENCE FROM THE
INDIVIDUAL BUT IMBEDDED BIAS BY
DATA ITSELF THAT IS DIFFICULT TO
DETECT VARIOUS WEIGHTS IF YOU
WILL CONTRIBUTION TO FINAL
SOLUTIONS OF ASPECTS IS
CONSTANTLY CHANGE RING AS MODELS
CHANGE AND ARE DYNAMIC AND NOT
SURE IF TOO GEEKY SUMMARIZING BY
TWO THINGS WE HAVE TO DIVERSIFY
WORKFORCE BY CONVERSATION AND IT
IS STRUCTURAL BIAS INTRODUCED BY
[INDISCERNIBLE] THIRD FRAMEWORKS
LIKE NIST INTERRUPT WITH THE
PROCESS ALL THE WAY THROUGH.
>>THANK YOU FOR EXCELLENT WORK
YOU ARE DOING.
>>THANK YOU.
>>AND PRESENTATION AND THINKING
AGAIN THESE ARE OUT OF SCOPE OF
WHAT YOU ARE DOING AND THINKING
YOU HAVE PROBABLY PROJECTS AS
WELL AND GIVING ACCESS TO MAYBE
LIKE DIFFERENT LEVELS IN
MINORITY SERVING INSTITUTIONS
AND DATA AND TRAINING YOU HAVE
AT BEGINNING OF PROCESS.
SOMEONE MENTIONED HERE USING
DATA THAT IS COMPLEX AND
REQUIRES A LOT OF INVESTMENT
OVER TIME AND INSTITUTIONS MAY
NOT HAVE EXPERTISE AND FOR
EXAMPLE WHAT WE DO AT USC AND
UNIVERSITY OF SOUTHERN
CALIFORNIA AND WE HAVE THROUGH
CENTERS WHAT IS A REALLY SMALL
SCALE AND USING MEDICARE DATA
AND WE TRAIN THEM FROM MINORITY
SERVING INSTITUTION AND TRAIN
THEM TO USE DATA AND CAN THERE
BE ORDER LIKE LARGER INITIATIVE
SO THAT YOU -- LIKE UNIVERSITIES
AND UNIVERSITIES AND RESEARCH
CENTERS WITH LOTS OF RESOURCES
WORKING ON SPECIFIC DATA SETS
HOW TO GIVE INCENTIVES TO
INCORPORATE STUDENTS OR SCHOLARS
FROM UNIVERSITIES WITHOUT AS
MUCH ACCESS TO EXPERTISE.
>>THANK YOU VERY MUCH. NOT
EASY QUESTION, AS YOU CAN
IMAGINE. WEBSITE SHARING.NIH
THAT IS OUR DATA SHARING SITE
WITH LINKS TO TRAINING AND
ANALYTICS TOOLS AND HAVE A
COLLEAGUE ANNA WITH NIHCD THAT I
HAVE TO GET HER WHO IS BUILDING
TRAINING MODULES WITH TARGET
THAT SPECIFIC STEPS IN UPLOADING
DATA CLOUD ENTERPRISE AND
UNDERSTANDING THEM AND GETTING
ACCESS TO SPECIFIC ANALYTICS.
THIRD IS PROGRAMS INITIATIVES
ARE OPEN TO EVERYONE.
I WILL MAKE SURE THAT DR. COTTON
HAS AIM HEAD ADDRESS FOR YOU.
THE CHALLENGE IS IT IS LIKE
CEMETERY PLOTS YOU DON'T REALIZE
YOU NEED SOMETHING UNTIL YOU
NEED IT TODAY. DON'T WANT TO
SPEND A LOT OF TIME DOING
COMPARATIVE SHOPPING. JUST GET
ME ONE. WHAT WE NEED I WAS
TALKING ABOUT IN DEMAND TRAINING
WORKFORCE AND THINKING ABOUT IN
MOMENT NEEDS AND INVESTIGATOR
STUCK AND HOW TO GET TO NEXT
STEP AND WHERE I ACTUALLY
BELIEVE THAT SOME AI TOOLS WILL
HELP US AND GONE THIS FAR IN
ANALYSIS AND WHAT IS NEXT STEP?
WE HAVE TO BUILD IN WAY EARLIER
CRITICAL THINKING IN SCHOLARS
THAT IS NOT COMPUTATIONAL
CHALLENGES AND ARE REALLY WE ARE
SHIFTING FROM PRODUCTION MODE
HOW DO I PRODUCE INTERESTING
QUESTION OR PAPER TO EVALUATIVE
MODE? DO I BELIEVE OR THINK
THIS TRAIN OF TRUST IS RIGHT AND
PLEA IS FOR KINDERGARTEN
CURRICULUM FOR DATA SCIENCE WASH
HANDS AFTER GOING TO POTTY FOR
INFECTION CONTROL. THEY KNOW
HOW TO TAKE CARE AND HAVE TO
BUILD CONCEPT OF DATA TO EVERY
DAY LIVES AND ALL THE WAY
THROUGH SO NOT SHOCK OWNER WHAT
DO YOU MEAN I HAVE TO USE R?
THEY ARE CHALLENGING MOMENTS FOR
PEOPLE AND PUTTING PLEA OUT
TRAINING PROGRAMS THROUGHOUT
COUNTRY HAPPY TO PARTNER AND
SHARE RESOURCES AND PROVIDE
INDIVIDUAL TRAINEESHIPS FOR F30S
AND F3 ONES INTERESTED IN DATA
SCIENCE AND THANK R YOU VERY
MUCH FOR YOUR TIME.
THANK YOU ELISEO.
>>THANK YOU, PATTY. FOR A
WONDERFUL PRESENTATION AND
CERTAINLY SETTING OUT CHALLENGES
FOR US.
WE WILL PROCEED WITH OUR NEXT
PRESENTER, RIGHT?
DR. LISA BARNES.
I WILL SAY A COUPLE THINGS ABOUT
DR. BARNES. SHE IS A SOLOMON
JAZZ PROFESSOR OF GERONTOLOGY
AND NEUROMEDICINE AND WITH RUSH
ALZHEIMER'S DISEASE CENTER AT
RUSH UNIVERSITY MEDICAL CENTER
AND ASSOCIATE DIRECTOR OF RUSH
ALZHEIMER'S DISEASE RESEARCH
CENTER AND PHD FROM UNIVERSITY
OF MICHIGAN IN BIOPSYCHOLOGY AND
COMPLETED POST DOCTORAL
FELLOWSHIP AT UNIVERSITY OF
CALIFORNIA DAVIS AND JOINED
FACULTY RUSH ASSISTANT PROFESSOR
IN 1999 AND FUNDED WITH NIH
GRANTS PUBLISHED OVER 300
MANUSCRIPTS INTERNATIONALLY
RECOGNIZED FOR SCIENCE AND
LEADERSHIP IN THIS AREA. I
FIRST REMEMBER HEARING ABOUT
LISA WHEN I WAS ON NATIONAL
INSTITUTE ON AGING COUNCIL AND
HER DIRECTOR OF THAT CENTER THAT
CAME AND TALKED ABOUT SOME OF
THE WONDERFUL STUDIES THAT THEY
WERE DOING INCLUDING THIS
INCREDIBLE RESOURCE OF BRAINS OF
AFRICAN AMERICANS PASSING AWAY
WITH COGNITIVE IMPAIRMENT AND IS
A DELIGHT TO HAVE LISA ON THE
COUNCIL AND TODAY I ASKED HER TO
PRESENT. SHE WILL TALK TO US
ABOUT IMPACTS OF DISCRIMINATION
ON BRAIN HEALTH IN OLDER AFRICAN
AMERICANS. LISA?
>>THANK YOU.
>>GREAT INTRODUCTION. CAN'T
FIGURE OUT HOW TO ADVANCE THE
SLIDES AND NO THING UP HERE.
SHOWING A KEYBOARD?
THERE IS A MOUSE UNDER HERE.
OKAY. THANK YOU FOR THIS
OPPORTUNITY TO PRESENT WORK TO
COUNCIL. THIS HAS BEEN A PEAK
OF MY CAREER THAT IS BEING ON
COUNCIL AND I'M NOT SAYING IT
BECAUSE I'M ROTATING OFF. I
MEAN, SERIOUSLY, IT HAS REALLY
-- I DREAMED OF BEING ON COUNCIL
YEARS AGO AND ACTUALLY HAVING
OPPORTUNITIES AND THREE THINGS I
KNOW I WILL TAKE AWAY.
ONE IS EXPOSURE TO ALL OTHER
INSTITUTES THAT I NEVER WOULD
HAVE GOTTEN THAT INFORMATION, I
DON'T THINK.
SO, YOU KNOW, BRINGING PEOPLE IN
TO TALK TO US AND LEARNING ABOUT
DIFFERENT INITIATIVES THAT HAS
BEEN REALLY INFORMATIVE AND
SECOND THING IS WORKING WITH
STAFF AND FEELING IN SOME SMALL
WAY AND I'M HELPING TO SHAPE
SCIENCE MOVING FORWARD AND
ANNOUNCEMENT AND NO GUARANTEE
FOR THAT AND LAST THING IS
CONNECTIONS WITH ALL OF YOU AND
FEEL AT END OF THE DAY THAT IS
MOST IMPORTANT THAT I WILL TAKE
THAT AWAY AND I ALREADY
CONNECTED WITH PEOPLE ROTATING
OFF AND HOPE THIS IS NOT THE END
FOR US WHO ARE ON HERE NOW THAT
WE WILL CONTINUE TO WORK
TOGETHER.
I WANT TO TALK TODAY A LITTLE
ABOUT WORK I HAVE BEEN DOING AT
RUSH TO UNDERSTAND WHAT I THINK
IS REALLY IMPORTANT FOR OLDER
AFRICAN AMERICANS.
SO, JUST AS A SORT OF BACKGROUND
THAT I WILL TALK ABOUT, I WANT
TO START OFF BY DESCRIBING SOME
CHALLENGES THAT WE FACE AS A
FIELD IN UNDERSTANDING
ALZHEIMER'S DEMENTIAL AND
PROGRAM THAT WE TRY TO DO AS
CENTER OF DIVERSITY AND HONING
IN ON A PARTICULAR FACTOR
CRUCIAL TO UNDERSTAND THAT WE
HEARD ABOUT IT IN LSAO'S
PRESENTATION IMPACT OF
DISCRIMINATION AS IMPORTANT
CORRELATE OF ASIAN AND OLDER
AFRICAN AMERICANS.
SO, WE -- I DON'T KNOW IF THIS
INSTITUTE HEARS A LOT ABOUT
ALZHEIMER'S DISEASE.
IT IS ONE OF THE MOST OR AMONG
THE MOST FEARED DISEASES OF OLD
AGE. IT IS AMONG THE LEADING
CAUSES OF DEATH AND IS ONLY ONE
THAT CANNOT BE SLOWED OR CURED
OR PREVENTED.
AND THIS IS SOME DATA THAT WE
RECENTLY PUBLISHED TO GIVE
OVERALL ESTIMATES OF BURDEN OF
ALZHEIMER'S DISEASE IN THE US
AND USING A LIKELIHOOD SCORE
APPROACH AND USING DATA FROM A
LARGE POPULATION STUDIES HOUSING
PROJECT WE ESTIMATED 6 MILLION
ADULTS OVERAGE 65 HAD CLINICAL
ALZHEIMER'S DISEASE IN 2020 AND
ALZHEIMER'S IS HIGHLY AGE
CORRELATED AND OVER AGE OF 75
AND 85 HAVE GREATER RISK AND
2060 THIS WILL INCREASE TO 14
MILLION UNLESS FINDING WAY TO
TREAT OR CURE THIS DISEASE AND
WE ARE ALL AGING AND HAVE TO BE
CONCERNED ABOUT THIS AND SAME
TIME WE HAVE A PUBLIC HEALTH
CRISIS THAT IS HAPPENING ON
BACKDROP OF POPULATION BECOMING
MORE DIVERSE AND I WILL SHOW
DATA FOR OLDER ADULTS OVER 65 BY
RACE AND ETHNICITY FROM US
CENSUS AND IF IN 2014 WHITE
OLDER ADULTS MADE UP 78% OF THE
POPULATION AND BY 2060 NUMBERS
WILL DECREASE TO 55% AND AT SAME
TIME ALL OTHER RACES AND
ETHNICITIES WILL INCREASE WITH
ACTUALLY HISPANIC LATINOS THAT
ARE INCREASING THE MOST AND ALL
COMMUNITIES OF COLOR WILL
INCREASE SO THAT WHITES WILL NO
LONGER BE MAJORITY BY 2060.
SO, YOU HAVE AGING POPULATIONS
GROWING RAPIDLY AND ARE BECOMING
MUCH MORE DIVERSE AS A
POPULATION AND THIS IS A
PARTICULAR PROBLEM FOR AFRICAN
AMERICANS THAT IS THOUGHT THAT
IS 2 TIMES MORE LIKELY THAN
WHITE AMERICANS TO HAVE
ALZHEIMER'S DEMENTIA AND COMES
FROM LARGE AND NATIONAL STUDIES
AND IS A STUDY THAT I REALLY
LIKE AND UNLIKE PREVIOUS STUDIES
THAT FOCUS ON BLACK AND WHITE
AND LATINOS ARE COMING UP MORE
AND MORE AND THIS STUDY HAD A
NICE REPRESENTATION OF ALL OTHER
RACES AND ETHNICITIES WE CARE
ABOUT HERE AS AN INSTITUTE THAT
IS A DATA FROM KAISER AND
NORTHERN ILLINOIS AND STANDARD
RATES BY RACE AND ETHNICITY
BETWEEN 2000 AND 2013 AND YOU
CAN SEE AFRICAN AMERICANS HAVE
HIGHEST INCIDENCE RATES AND
AMERICAN INDIAN AND ALASKA
NATIVES LATINOS AND PACIFIC
ISLANDERS ARE LOWER AND INDIANS
AND ALASKA NATIVES ARE HIGHER
THAN AFRICAN AMERICANS AND ASIAN
AMERICANS ARE LOWER AND A LITTLE
BIT PROTECTED AND SOMETHING WE
SEE IN OTHER OUTCOMES AS WELL.
OF COURSE, YOU KNOW WE KNOW
SUBGROUPS ARE WITH THESE GROUPS
AND NONE IS A MONOLITH AND IS
ADVANCED IN WHAT WE HAVE BEEN
DOING IN THE PAST LOOKING AT
MAINLY BLACKS AND WHITES AND
DATA IS OLD AND HAS BEEN
REPLICATED BY VA AND TEAMS
SEEING SIMILAR PATTERN WITH
AFRICAN AMERICANS HAVING A
HIGHER RISK AND THERE ARE REAL
CHALLENGES WE HAVE TO FACE TO
REALLY UNDERSTAND THE IMPACT OF
THESE DATA AND WHAT WE CAN DO
ABOUT THEM MOVING FORWARD.
SO, THERE IS FOUR CHALLENGES I
WANT TO RAISE AND HOPEFULLY BY
THE END OF THE PRESENTATION YOU
WILL UNDERSTAND WHAT WE ARE
DOING TO TRY TO COMBAT SOME
CHALLENGES OR DEAL WITH
CHALLENGES.
FIRST ONE IS THE RECRUITMENT
PRACTICES THAT I'M SURE WE ARE
AWARE OF AS AN NIMHD INSTITUTE
AND MOST CLINICAL RESEARCH AT
LEAST IN ALZHEIMER'S DISEASE
REALLY USES THESE PASSIVE
STRATEGIES WHERE RECRUITMENT IS
NOT CENTERED IN COMMUNITIES OF
COLOR AND RECRUIT FROM
WELL-RESOURCED CLINICS AND
ACADEMIC MEDICAL CENTERS
SELECTION BIAS YOU HAVE IF IN
SAMPLES AND INCONSISTENT RESULTS
ACROSS STUDIES THAT OFTEN NOT
GENERALIZABLE AND WHAT IS STILL
HAPPENING IS INCLUSION AND
EXCLUSION CRITERIA STILL TEND TO
FAVOR WHITE PARTICIPANTS GETTING
PURE ALZHEIMER'S DISEASE
PARTICIPANTS AND WANT PEOPLE
WITH FEW CHRONIC COMORBIDITIES
AND ACCESS TO TRANSPORTATION TO
COME TO BUSY MEMORY CLINICS.
THESE THINGS FAVOR PEOPLE WITH
MORE RESOURCES AND PEOPLE THAT
ARE HEALTHIER.
YOU GET REALLY A SORT OF BIASED
SAMPLE.
YOU KNOW, THIS IS WHERE
REFLECTED WHERE YOU THINK ABOUT
WHERE OUR KNOWLEDGE IS COMING
FROM CURRENTLY IN THIS FIELD.
THERE WAS A STUDY RECENTLY DONE
WHERE THEY LOOKED AT CURRENT
LANDSCAPE OF ALZHEIMER'S STUDIES
AND 8 TO 10 STUDIES AND FOUND
THAT THE MAJORITY OF
PARTICIPANTS WERE WHITE ADULTS
AND 79% THAT YOU CAN SEE THE
BREAKDOWN FOR OTHER GROUPS.
KNOWLEDGE-BASE WE ARE GAINING IN
THIS FIELD IS COMING
PREDOMINANTLY FROM ONE
POPULATION.
IT IS JUST REALLY UNACCEPTABLE.
IF WE LOOK, YOU KNOW, IN
CLINICAL TRIALS WHERE WE ARE
DEVELOPING THERAPEUTICS AND
TESTING NEW MEDICINES THAT IS
REALLY VERY EVIDENT THERE IS A
PROBLEM.
SO, ON THE LEFT IS DATA AND
NIA-FUNDED TRIALS THAT YOU CAN
SEE THE REPRESENTATION THAT
MATCHES EPIDEMIOLOGIC STUDIES
ABOUT 77% OF PARTICIPANTS IN
THOSE TRIALS ARE WHITE. AFRICAN
AMERICANS ARE ABOUT 14%.
INDUSTRY-FUNDED TRIALS,
ENROLLMENT IS WORSE FOR GROUPS
AND OVERALL IS LESS THAN 5% OF
TRIAL PARTICIPANTS COME FROM
MINORITIZED BACKGROUNDS THAT YOU
PROBABLY HAVE HEARD THAT THERE
HAS BEEN BUZZ RECENT BUZZ -- AND
THEY ACTUALLY INCLUDED LESS THAN
2% BLACKS IN TREATMENT ARMS
HIGHLIGHTING NUMBERS THERE AND
HAVING SOMETHING LIKE THIS YOU
ARE UNABLE TO ASSESS
EFFECTIVENESS IN BLACK PATIENTS
AND ASSESS DRUG SAFETY AND
SIDE-EFFECTS IN BLACK PATIENTS
AND THERE IS LOTS OF
SIDE-EFFECTS FOR PATIENTS THAT
CARRY ALLELE THAT IS HIGHER IN
BLACK PEOPLE AND IS AN ARTICLE
RECENTLY WRITTEN BY JENNIFER
MANLY AND MARIA AND JAMMA IN
NEUROLOGY THAT IS REALLY THE
CRUX OF THE ISSUE AND TOOK OUT
THE QUOTE HERE. IT SAYS THAT
DECISION TO APPROVE
[INDISCERNIBLE] ASSESSING
EVIDENCE INCLUDING ONLY SIX
PLAQUE PATIENTS AS SUFFICIENT
REVEALS LOW PRIORITY GIVEN TO
BLACK TRIAL PARTICIPANTS AND
HEALTH OF BLACK PEOPLE.
SO, THAT IS ONE CHALLENGE AND
SECOND CHALLENGE IS REALLY, YOU
KNOW, BORN OUT OF THAT. IT IS
REALLY THE RESULT OUT OF
EXCLUSION WHEN NOT INCLUDED IN
THESE TYPES OF STUDIES WE END UP
NOT BEING TRUSTED BY THE
COMMUNITY WHETHER CAUSE OR
CONSEQUENCE THAT IS DEBATABLE
AND ALZHEIMER'S ASSOCIATION
RECENTLY HELD A NUMBER OF FOCUS
GROUPS WITH DIFFERENT PEOPLE
FROM DIFFERENT RACES AND
ETHNICITIES AND REALLY TELLING
FOR THE ISSUE, BLACK AMERICANS
ARE MOST LIKELY OF ALL OF THE
OTHER GROUPS TO BELIEVE THAT
MEDICAL RESEARCH IS BIASED
AGAINST PEOPLE OF COLOR AND THEY
ARE LEAST LIKELY TO TRUST THAT
ALZHEIMER'S CURE WILL BE SHARED
EQUALLY REGARDLESS OF RACE COLOR
AND ETHNICITY AND SHOWING WE
HAVE WORK TO DO TO REALLY GAIN
TRUST OF THE COMMUNITY AND CAN'T
KEEP SAYING THAT COMMUNITY
DOESN'T TRUST US. WE HAVE TO
THINK ABOUT RESEARCHERS AND US
AND WHY WE ARE NOT TRUSTWORTHY
AND THIRD CHALLENGE THAT COMES
ON HEALS OF THAT IS A LITTLE
MORE TECHNICAL.
IT IS IMPORTANT. YOU KNOW,
STUDIES IN THIS AREA THAT ARE
LOOKING AT DISPARITIES BETWEEN
BLACKS AND WHITES THAT HAVE
MAINLY BEEN FOCUSED ON
CROSS-SECTIONAL DESIGNS AND
AFRICAN AMERICANS TEND TO
PERFORM LOWER ON COGNITIVE
FUNCTION TESTS SHOWN FOR MANY,
MANY YEARS AND TESTS USED TO
MAKE ALZHEIMER'S DIAGNOSIS AND
PERFORMANCE IS CORRELATED WITH
MANY THINGS OUTSIDE OF COGNITION
ITSELF LIKE EDUCATION AND HAVE
OTHER THINGS LISTED ON THE SLIDE
AND MANY FACTORS VARY BY RACE.
OFTEN WE ARE NOT CONTROLLING FOR
THESE THINGS AND CAN'T POSSIBLY
CONTROL FOR EVERYTHING DIFFERENT
BETWEEN BLACKS AND WHITE AND IF
WE TAKE A SNAPSHOT LOOK AT
PERFORMANCE WE WILL GET A
DIFFERENT RESULT AND WHAT I HAVE
ARGUED IS THAT WE HAVE TO
COMPLEMENT THESE CROSS-SECTIONAL
DESIGNS WITH LONGITUDINAL
DESIGNS AND IF WE ARE REALLY
INTERESTED IN AGING THAT IS
FUNDAMENTALLY A CHANGE OR
PROCESS OF CHANGE OVER TIME, WHY
ARE WE NOT LOOKING AT HOW PEOPLE
ARE CHANGING TO SEE IF THERE ARE
RACIAL DIFFERENCES THERE?
THIS SLIDE SHOWS YOU THAT
EVERYONE HAS TO HAVE A SORT OF
NORMAL AGING PROCESS AND
EXPERIENCING SLIGHT CHANGES
DURING AGING AND IS A LONG
PRECLINICAL PHASE BEFORE PEOPLE
START TO MANIFEST THE SYMPTOMS
AND RED LINE YOU HAVE CLINICAL
SYMPTOMS OF DEMENTIA AND MANY
STUDIES TAKE PEOPLE ACROSS
DIFFERENT CROSS-SECTIONAL POINTS
AND COMPARING ACROSS RACE AND I
WANT TO COMPARE PEOPLE AND SEE
HOW TRAJECTORIES ARE CHANGING
OVER TIME AND FINAL CHALLENGE I
THINK IS WE ARE MISSING
NARRATIVES AND LIVED EXPERIENCES
OF PEOPLE MOST AT RISK FOR THIS
DISEASE.
I POINT TO YOU, AGAIN, TO
KNOWLEDGE THAT WE ARE GAINING
AND WE ARE MOVING SO QUICKLY AND
WE ARE LEARNING ABOUT
ALZHEIMER'S THAT IS COMING FROM
A HOMOGENOUS POPULATION AND
PEOPLE MOST AT RISK THAT THEIR
NARRATIVES ARE NOT BEING
INCLUDED AND WHY I STARTED AS A
COHORT MANY YEARS AGO. I COULD
TRY TO UNDERSTAND AND ASK
QUESTIONS THAT ARE RELEVANT TO
AGING PROCESS.
I WANT TO DESCRIBE RESEARCH THAT
WE STARTED THAT TRIES TO CENTER
DIVERSITY AND OBJECTIVE OF
PROGRAM IS REALLY TO BUILD AN
INFRASTRUCTURE AND RESOURCE FOR
INVESTIGATORS PRIMARILY TO
UNDERSTAND COGNITIVE AGING AND
WANT TO GIVE A VOICE TO THOSE
HISTORICALLY EXCLUDED FROM
ALZHEIMER'S STUDIES SO WE CAN
IDENTIFY RISK AND PROTECTIVE
FACTORS FOR COGNITIVE DESIGN AND
ALZHEIMER'S DEMENTIA AND IN 2004
I STARTED A STUDY MINORITY AGE
RESEARCH STUDY KNOWN AS MARS IN
THE COMMUNITY AND STUDY CONSISTS
OF OVER 800 AFRICAN-AMERICANS
AND STARTED AND 350 AND ONGOING
ENROLLMENT THAT IS FUNDED BY NIA
SINCE 2004 AND ONLY CRITERIA TO
GET INTO THE STUDY YOU HAVE TO
BE AT LEAST 65 YEARS OF AGE AND
CAN'T HAVE KNOWN DEMENTIA AND
TAKING MEDICATIONS AND HAVING A
DIAGNOSIS.
RATHER THAN HANGING A FLYER IN
OUR MEMORY CLINIC WE GO TO THE
COMMUNITY AND RECRUIT FROM THE
COMMUNITY PRIMARILY CHURCHES AND
SENIOR BUILDINGS AND
ORGANIZATIONS AND FRATERNITY AND
SORORITIES IN CHICAGO TO GET,
YOU KNOW, BETTER REPRESENTATION
WHAT IS OUT THERE AND WE KNOW
THAT MANY AFRICAN AMERICANS
NEVER MAKE IT TO MEDICAL
ATTENTION IF THEY ESPECIALLY
HAVE MEMORY CONCERNS AND ANOTHER
BARRIER WE TRY TO OVERCOME IS WE
DON'T HAVE PEOPLE COME TO RUSH
EVER. WE GO TO THEM AND SEND A
TEAM OUT AND RESEARCH ASSISTANCE
AND PHLEBOTOMISTS AND NURSES AND
DOCTORS TO DO TESTING IN COMFORT
OF THEIR HOME AND DO
COMPREHENSIVE COGNITIVE EXAMPLE
ABOUT 19 DIFFERENT TEST AND
MEASURE A VARIETY OF RISK
FACTORS AND EVEN TAKE BLOOD IN
THE HOME. FOLLOW UP RATE IS
REALLY GOOD OVER 90% AMONG
SURVIVORS EVERYONE STARTS OUT
WITH DEMENTIA AND BASELINE AND
10% DEVELOPED ALZHEIMER'S OVER
TIME AND 2011 WE STARTED TO
RECRUIT FOR BRAIN AUTOPSY AND I
LOOKED OUT THERE IN THE
LITERATURE AND THERE WAS HARDLY
ANY DATA ON THE UNDERLYING
PATHOLOGY IN THE BRAINS OF OLDER
AFRICAN AMERICANS AND THIS HAS
BEEN MOST CHALLENGING ASPECT OF
THE STUDY. IT IS REALLY, REALLY
HARD TO RECRUIT FOR BRAIN
AUTOPSY AND MINORITIZED
POPULATIONS AND WE HAVE 160
AUTOPSIES TO DATE AND WILL NOTE
IF YOU GO TO AN ALZHEIMER'S
CENTER YOU WILL GET BRAINS FROM
AFRICAN AMERICANS AND PEOPLE
HAVE DEMENTIA AND SHOW UP TO THE
CLINIC AND WANT AUTOPSY WHEN
THEY DIED TO SEE WHAT THE
DIAGNOSIS WAS. IT THIS STUDY IS
PEOPLE SIGNING UP WITHOUT
DEMENTIA FOLLOWING OVER TIME AND
THEY DIE AND AT END THERE ARE
PEOPLE WITH DEMENTIA AND SOME
DON'T. WE DON'T HAVE ANYTHING
LIKE THIS IN THE FIELD. IT IS
REALLY GOING TO BE A GREAT
RESOURCE FOR PEOPLE WHO WANT TO
UNDERSTAND UNDERLYING
NEUROBIOLOGY OF ALZHEIMER'S AND
TO DO A STUDY LIKE THIS THOUGH
IS INTENSIVE COMMUNITY-BASED
WORK AND PHILOSOPHY TO GIVE
FIRST AND MEET COMMUNITY NEEDS
AND BEFORE I GOT FUNDED I WAS IN
THE COMMUNITY GIVING
PRESENTATIONS HOSTING HEALTH
FAIRS AND DOING MEMORY SCREENS
AND TRYING TO BUILD A
RELATIONSHIP WITH PEOPLE SO WHEN
I FINALLY GOT FUNDED I WAS ABLE
TO RECRUIT 200 PEOPLE IN THE
FIRST YEAR THAT IS CONTINUOUSLY
GROWING AND DURING COVID
ALTHOUGH WE HAVE TO HALT OUR
IN-PERSON RESEARCH, OBVIOUSLY.
WE STILL CONTINUE TO DO THINGS
OVER THE PHONE AND KEPT
COMMUNITY PRESENCE BY TRYING TO
DO THINGS, YOU KNOW, LIKE COVID
TESTING AND SCREENING AND
ESSENTIAL WORKERS WHO STILL HAVE
TO GO TO WORK EVEN THOUGH
EVERYONE ELSE IS AT HOME WE HAVE
LAUNDROMAT EVENTS WASHING
CLOTHES OF CENTRAL WORKERS TO
HAVE PRESENCE TO THE COMMUNITY
AND KEEP GIVING BACK TO THE
COMMUNITY THAT REALLY PAID OFF
AND OTHER THING THAT IS REALLY
IMPORTANT IS I AS A PI, I'M IN
THE COMMUNITY WITH, YOU KNOW,
THE PARTICIPANTS. IT IS NOT
JUST MY STAFF. WE ARE OUT THERE
ENGAGING WITH THE COMMUNITY AND
TRYING TO HOLD AND HOST
COMPLUNTY CENTERED RETENTION
EVENTS WHERE WE ARE GIVING BACK
INFORMATION.
WE ARE NO THE DOING A HELICOPTER
THING ROLLING IN GRABBING DATA
AND LEF LEAVING. WI ARE THERE
THE LONG HAUL AND BUMP IN THE
GRANT REMAINING STAY IN
COMMUNITY AND PARTNERS
THROUGHOUT AND THAT PAID OFF AND
IS HOW COHORT LOOKS CURRENTLY
OVER 800 SELF-IDENTIFIED AFRICAN
AMERICANS PREDOMINANTLY WOMEN
THAT IS CONSISTENT WITH MOST
AGING RESEARCH WOMEN TEND TO
VOLUNTEER LONGER AND MEN HAVE
PROTECTION AND DIE EARLY AND
DON'T END UP IN STUDIES AND MAIN
EDUCATION IS RELATIVELY HIGH FOR
THIS COHORT I WILL ADMIT THAT,
THAT IS REFLECTIVE ON HEALTHY
VOLUNTEER COHORT.
WE HAVE A RANGE. SOME PEOPLE
HAVE FOUR YEARS OF EDUCATION UP
TO 30 YEARS OF EDUCATION.
ABOUT HALF OF THE COHORTS SO FAR
HAS AGREED TO BRING DONATION.
THIS IS A CONTINUOUS EDUCATION
PIECE THAT WE ARE ALWAYS, YOU
KNOW, EVERY YEAR WE ARE ASKING
PEOPLE DO YOU WANT TO GIVE YOUR
BRAIN AND GIVING THEM EDUCATION
ABOUT WHY IT IS IMPORTANT.
97% HAVE STORED PLASMA AND SERUM
AND 95% OF DNA AND CURRENTLY IN
YEARS 16 TO 20.
THROUGH THIS RESOURCE WE HAVE
BEEN ABLE TO LEVERAGE AND BUILD
INTO THE STUDY OTHER STUDIES.
WE HAVE BRAIN IMAGING AND
DECISION MAKING SMART HOMES
NUTRITION AND MEDICARE. PEOPLE
ARE COMING TO ME CONSTANTLY WITH
REQUESTS TO ADD STUDIES THAT HAS
BECOME A RESOURCE. MARS IS
COMPLETELY AFRICAN AMERICAN AND
I'M INTERESTED AND WITHIN RACE
HETEROGENEITY.
THERE IS QUESTIONS YOU NEED TO
ASK ACROSS RACE AND WE HAVE
ANOTHER COHORT THAT HAS BEEN
ONGOING FOR OVER 25 YEARS RUSH
AGING PROJECT AND THIS COHORT IS
2,000 OLDER PERSONS WITHOUT
DEMENTIA RECRUITING THROUGHOUT
CHICAGO IN NORTHEASTERN ILLINOIS
IS PREDOMINANTLY WHITE AND
SIMILAR TO MARS THEY AGREE TO
ANNUAL DETAILED EVALUATIONS RISK
FACTOR ASSESSMENT AND BLOOD
DONATION AND UNLIKE MARS TO BE
IN THIS STUDY YOU HAVE TO AGREE
TO ORGAN DONATION AT DEATH THAT
IS A CONDITION OF ENTRY AND AS A
RESULT THEY HAVE VERY FEW
MINORITIZED PEOPLE AND IS
SIGNIFICANT OVERLAP IN RISK
FACTORS WITH MARS AND USE
HARMONIZED COGNITIVE BATTERY
ALLOWING TO MERGE DATA LOOKING
ACROSS RACE WHEN WE WANT TO.
THIS IS DESIGN OF BOTH STUDIES
THAT WE ENROLL PEOPLE AT
BASELINE WITH NO DISEASE AND
DOCUMENT RISK FACTORS AND TEST
THEM EVERY YEAR ANNUALLY WITH
THE SAME BATTERY OF TESTS TO
MEASURE THEIR PERFORMANCE OVER
TIME AND AT SOME POINT SOME
PEOPLE WILL DEVELOP INCIDENT ALZ
SDIEMERS AND SOME WILL REMAIN
COGNITIVELY UNIMPAIRED AND THOSE
COMING TO AUTOPSY WE RELAY RISK
FACTORS TO PATHOLOGY IN THE
BRAIN TO NO PATHOLOGY TO
SOMETHING SEVERE AND SEE IF
PATHOLOGY MIGHT BE MEDIATING
ASSOCIATION BETWEEN RISK FACTORS
AND OUTCOMES MEASURING CHANGE IN
PERFORMANCE OR INCIDENCE DISEASE
THAT HAS BEEN A REALLY POWERFUL
DESIGN TO UNDERSTAND AND LOOK AT
RACIAL DIFFERENCES AND HOW
PEOPLE ARE CHANGING OVER TIME.
SO, WHEN WE LOOK AT, YOU KNOW,
JUST HOW PEOPLE CHANGE, I'M
SHOWING YOU HERE A SPAGHETTI
PLOT OF RANDOM SAMPLES OF BLACKS
AND WHITES AND TWO STUDIES AND Y
AXIS IS A COMPOSITE MEASURE OF
GLOBAL COGNITIVE FUNCTION AND
POSITIVE NUMBERS ARE BETTER AND
NEGATIVE NUMBERS WORSE AND WE
PLOT AGAINST AGE.
BLACK PEOPLE ARE BLACK LINES AND
RED LINES ARE WHITE PEOPLE AND
YOU CAN SEE THERE IS A LOT OF
HETEROGENEITY IN HOW PEOPLE
CHANGE AND SOME ARE DECLINING
PRECIPITOUSLY AND SOME STAYING
STABLE AND SOME GETTING BETTER
AND SMOOTHING OUT CURVES AND
LOOKING AT MIXED EFFECTS MODELS
PATTERN LIKE THIS IF NO MATTER
WHAT DOMAIN FUNCTION YOU LOOK AT
TOP GRAPH SHOWING PERFORMANCE ON
SEMANTICS MEMORY AND MEMORY FOR
FACTS AND POSITIVE NUMBERS ARE
BETTER AND NEGATIVE ARE WORSE
AND YOU SEE WHITES ARE SHOWN IN
GREEN LINES AND EACH LINE IS AN
ESTIMATE OF SOMEONE WHO STARTED
THE STUDY AT A CERTAIN AGE AND
THERE IS FOLLOW UP FOR ABOUT 5
OR 6 YEARS AND BLACK STRONG AND
BLUE LINES ARE ALWAYS BELOW AND
THAT IS RESULT I TOLD YOU ABOUT
EARLIER. BLACK PEOPLE ARE
SCORING LOWER ON THESE TESTS.
LOOKING AT TRAJECTORIES THERE
ARE SLOPES AND NO DIFFERENCE HOW
PEOPLE ARE CHANGING AND FAR OUT
INTO OLDER AGES LIKE AGE 90
LOOKS LIKE WHITE PEOPLE ARE
DECLINING FASTER AND OUT THERE
IN OLDER AGES INTERPRETING WITH
CAUTION AND POINT IS WE DON'T
SEE A DIFFERENCE IN HOW PEOPLE
CHANGE OVER TIME AND THIS IS A
VOLUNTEER COHORT AND THEY ARE
HEALTHY AND EDUCATED AND WE
REPLICATED THIS IN CHICAGO
HEALTH AND AGING PROJECT
POPULATION-BASED STUDY 10,000
BLACKS AND WHITES YOU SEE A
SIMILAR FINDING WHITES STARTING
AGE 68, 73 OR 78 ARE PERFORMING
AT A HIGHER LEVEL AND LINES
BETWEEN BLACKS AND WHITES ARE
PARALLEL AND THERE IS NO
DIFFERENCE BETWEEN HOW PEOPLE
ARE CHANGING OVER TIME AND I'M
SHOWING THERE ARE SEEMING TO BE
INCREASED RISK OF ALZHEIMER'S
AMONG AFRICAN AMERICANS DATA
LIKE KAISER AND VA AND WE DON'T
SEE DIFFERENCES IN DECLINE AND
SEE LEVEL DIFFERENCES; RIGHT?
MY QUESTION HAS BEEN HOW DO I
UNDERSTAND WHAT IS ACCOUNTING
FOR LEVEL DIFFERENCES AND I WANT
TO JUST RUN THROUGH
DISCRIMINATION AS A POTENTIAL
CORRELATE OF COGNITIVE AGING
THAT WE HAVE SHOWN IN A NUMBER
OF DIFFERENT STUDIES TO BE
IMPORTANT IN AFRICAN AMERICANS.
WE KNOW THERE IS A NUMBER OF
ESTABLISHED RISK FACTORS FOR
THIS DISEASE AND SOME TO
INCREASE YOUR RISK AND SOME
DECREASE YOUR RISK. MOST OF
THESE ARE NON-MODIFIABLE AND
EXCEPT FOR EDUCATION MAYBE;
RIGHT?
I'M REALLY INTERESTED IN YOU
KNOW THE SOCIAL FACTORS BECAUSE
WE KNOW THAT RACE IS A SOCIAL
POLITICAL CONSTRUCT THAT IS
ROOTED IN CULTURAL IDENTITY AND
SHAPED BY HISTORIC EVENTS AND I
WANT TO UNDERSTAND HOW DO SOCIAL
DETERMINANTS INFLUENCE BRAIN
HEALTH? WE ARE STUDYING PEOPLE
IN 70S AND 80S NOW AND WHO CAME
AT AN AGE OF TIME THAT IS
DIFFERENT FROM NOW; RIGHT?
THEY LIVE THROUGH JIM CROW AND
ALL KINDS OF LITERALLY NASTY
EVENTS AND HOW HAS THAT IMPACTED
AGING PROFILE OF OLDER ADULTS
AND ONE QUESTION THAT IS EASY
QUESTION THAT WE ASKED PEOPLE IS
WHERE WERE YOU BORN AND LIVING
AT AGE 12 AND EVERYONE IN THE
STUDY LIVES IN CHICAGO NOW AND
IS A GREAT MIGRATION IN 1970S
AND EARLIER WHERE ABOUT 6
MILLION SOUTHERNERS RELOCATED
FROM THE SOUTH AND ARE DIFFERENT
PATTERNS AND LARGE PROPORTION
KACHL FROM SOUTH TO CHICAGO AND
LOTS OF PEOPLE ARE IN STUDIES
NOW AND WE ASK PEOPLE WHERE WERE
YOU BORN AND WE LOOK AT
COGNITION AND YOU SEE PEOPLE WHO
ARE BEAU RN IN THE SOUTH ARE
LIVING IN SOUTH AT AGE 12
PERFORM MORE POORLY ON OUR TESTS
SHOWN WITH RED BARS THAN THOSE
BORN IN THE NORTH OR LIVING IN
THE NORTH AT AGE 12 AND ARE
DIFFERENCES BETWEEN SOUTH AND
NORTH ESPECIALLY DURING THAT
TIME AND ONE THING WE KNOW THAT
IS DIFFERENT IS THE EDUCATIONAL
EXPERIENCE.
BECAUSE SEGREGATED SCHOOLS WERE
OUTLAWED IN 1954 WITH BROWN
VERSUS BOARD OF EDUCATION AND
LOTS OF PARTICIPANTS HAD TO
UNDERGO THIS WHOLE PROCESS OF,
YOU KNOW, OF DEALING WITH
SEGREGATED SCHOOLS AND GOING TO
INTEGRATIVE SCHOOLS AND WE ASK
ABOUT EXPERIENCES WITH
SEGREGATION AND DID THEY ATTEND
LEGALLY SEGREGATED SCHOOLS?
IF SO, FOR HOW LONG?
WE DIDN'T SEE SEGREGATION ITSELF
EFFECTED COGNITIVE TEST
PERFORMANCE BUT SAW REALLY
INTERESTING INTERACTIONS SUCH
THAT THOSE WHO WERE EDUCATED IN
THE SOUTH AND ATTENDED LEGALLY
DESEGREGATED SCHOOLS PERFORM
MORE POORLY THAN ANY OTHER
PARTICIPATE YANTSS AND YOU CAN
SEE RED AND GREEN LINES SHOW
PEOPLE BORN IN THE NORTH AND
THEIR PERFORMANCE IS HIGHER LIKE
I SHOWED YOU IN PREVIOUS SLIDE
AND PEOPLE WERE GOING TO SCHOOL
IN THE SOUTH AND HAVE LOWER
PERFORMANCE. YOU CAN SEE THAT,
YEAH. IT IS EVEN PEOPLE WHO
WENT TO SCHOOL IN DESEGREGATED
SCHOOLS THAT THEIR PERFORMANCE
IS WORSE THAN THOSE WHO ATTENDED
LEGALLY SEGREGATED SCHOOLS AND
EVERYTHING I READ ABOUT
SEGREGATION AT THAT TIME SAID
THAT SEGREGATED SCHOOLS WERE
WORSE AND FEWER RESOURCES AND
LOWER QUALITY TEACHERS AND ALL
THESE THINGS.
I DIDN'T EXPECT THIS FINDING AND
NOT SAYING THAT INTEGRATION IS
BAD BUT CONTEXT IS IMPORTANT.
INTEGRATION AT THAT TIME WHERE
WE KNOW THAT BLACK STUDENTS ARE
NOT WANTED AND PARENTS ARE
SPITTING AT YOU CALLING YOU
NAMES AND CHILDREN BEING NASTY
TO YOU IS TRAUMATIC I'M SURE FOR
A YOUNG PERSON. WE CAN SEE
EFFECTS OF THAT NOW THAT THEY
ARE IN 50S, 60S AND 70S AND NO
DIFFERENCE IN RESEARCH IN WHITE
ADULTS LOOKING AT HOLOKOUFT AND
SAME AGE AND FACTOR TO PAY
ATTENTION TO WHERE PEOPLE WERE
BORN AND EARLY LIFE EXPERIENCE
AND THAT IS PLAYING A ROLE IN
HOW PEOPLE ARE AGING AND ANOTHER
FACTOR REALLY IMPORTANT TO
UNDERSTAND IS DISCRIMINATION
BECAUSE OF THINGS I TOLD YOU
ALREADY ABOUT PEOPLE COMING UP
DURING THIS TIME AND WE LOOKED
AT A NUMBER OF DIFFERENT
OUTCOMES AND SEE THAT
DISCRIMINATION EFFECTS ALL
DIFFERENT OUTCOMES SHOWING A FEW
OF THEM PUBLISHING INFORMATION
DISCRIMINATION ASSOCIATED WITH
MORTALITY IN CHICK AGROHEALTH
AND AGING PROJECT AND POTENT
RISK FACTOR TO PAY ATTENTION TO
LOOKING AT THIS POPULATION AND
ONE OF THE FIRST GROUPS TO SHOW
THIS IS AN IMPORTANT EXPOSURE
FOR OLDER ADULTS WITH COGNITION
AND MOST RESEARCH BEFORE WE
PUBLISHED THIS HAD BEEN DONE
WITH MIDDLE AGED AND YOUNGER
ADULTS AND WHAT I FIND
FASCINATING IS OLDER ADULTS WE
KNOW EXPERIENCE HORRENDOUS
DISCRIMINATION AND REPORTS ON
SCALES ARE REALLY LOW.
THEY ARE REALLY LOW.
WE DON'T KNOW WHY THAT IS. IS
IT AN EMOTIONAL SELECTIVITY
EFFECT OR ARE THEY COMPARING NOW
TO HOW THINGS USED TO BE AND
EVEN THOUGH NUMBERS ARE SO MUCH
LOWER, WE ARE STILL SEEING THAT
IT EFFECTS THESE IMPORTANT
OUTCOMES AND HERE WE SEE THAT IT
EFFECTS COGNITION AND PRIMARILY
EPISODIC MEMORY AND PERCEPTUAL
SPAEK SPEECH AND IS ASSOCIATED
WITH PROTEIN MEASURED IN BLOOD
AND SUGGESTING POTENTIAL
INFLAMMATORY MECHANISM AND
LINKING DISCRIMINATION TO POOR
HEALTH REPLICATED IN HRS STUDY.
WE EVEN TRIED TO UNDERSTAND HOW
DISCRIMINATION MIGHT BE GET
UNDER THE SKIN AND INTO THE
BRAIN EFFECTING BRAIN HEALTH AND
IN A STUDY WE FOUND FMRI AND
DISCRIMINATION ASSOCIATED WITH
CHANGES AND CONNECTIVITY IN
AREAS THAT ARE IMPORTANT FOR
TRUST PERCEPTION AND IN OUR
STUDY THAT I'M TRYING TO GET
PUBLISHED, WE LOOKED AT THE
EFFECT OF DISCRIMINATION ON
DIFFERENT PATHOLOGIES AND THEY
ARE MEASURED IN THE BRAIN AND WE
FOUND IT WAS ACTUALLY ASSOCIATED
WITH MORE ATHERO SCLEROSIS AND
LATE THAT IS TDP43 PATHOLOGY
SUGGESTING AGAIN SOME VASCULAR
COMPONENT TO DISCRIMINATION
EXPOSURE.
IT IS NOT JUST, YOU KNOW,
DISCRIMINATION.
IT IS PERCEIVED STR ES THAT IS
ALSO SEEMING TO BE A POTENT
FACTOR AND PEOPLE THAT REPORT
HIGHER LEVELS OF PERCEIVED
STRESS USING COHEN PERCEIVED
STRESS SCALE ASKING HOW MUCH IS
YOUR LIFE UNPREDICTABLE AND
OVERLOADING AND PEOPLE REPORTING
HIGHER LEVELS OF PERCEIVED
STRESS HAVE FASTER RATES OF
DECLINE AND PEOPLE WITH 90TH
PERCENTILE OF STRESS COMPARED TO
WITH 10TH PERCENTILE ARE TRUE
FOR EPISOTIC MEMORY TESTS AND
VISUOSPATIAL TESTS AND LAST RISK
FACTOR I WILL SHARE IS WE ARE
NOT JUST INTERESTED IN
DISCRIMINATION AS AN EXPOSURE
BUT COPING WITH IT AND JOHN
HENRY AS YOU KNOW IS A RISK
FACTOR DEVELOPED OR ESTABLISHED
BY SHERMAN JAMES AND NOTED
EPIDEMIOLOGISTS THAT HE -- JOHN
HENRY WAS A FIKTTIVE CHARACTER
TRYING TO BEAT A STILL MACHINE
AND EFFORT HE WENT THROUGH TO
BEAT THIS MACHINE IS A MEASURE
OF JOHN HENRY WITH THIS EFFORT
OF COPING AND SHERMAN JAMES
LOOKING AT IT WITH
CARDIOVASCULAR DISEASE AND BLACK
MEN WANTED SEE IF IT WOULD BE
ASSOCIATED WITH MEN AND OLDER
ADULTS AND FOUND ASSOCIATED WITH
WORST COGNITION AND SIMILAR WITH
EFFECT OF HAVING FEWER YEARS OF
EDUCATION AND PEOPLE SCORING
HIGHER ON JOHN HENRY MORE EFFORT
FOR COPING ARE HAVING LOWER
PERFORMANCE ON COGNITIVE
FUNCTION.
SO, TO CONCLUDE, YOU KNOW, I
HAVE SHOWN YOU RACIAL
DIFFERENCES IN ALZHEIMER'S AND
DEMENTIA, I THINK I NEED MORE
DATA. I THINK THEY ARE LIKELY
DUE TO RACIAL DIFFERENCES AND
WHERE PEOPLE START. YOU KNOW?
WHEN WE LOOK AT LONGITUDINAL
STUDIES WE DON'T REALLY SEE
RACIAL DIFFERENCES IN DECLINE
THAT IS A HALLMARK FEATURE OF
ALZHEIMER'S AND DIDN'T SHOW DATA
TODAY BUT WE HAVE PATHOLOGY DATA
AND DIDN'T SEE DIFFERENCES IN
UNDERLYING PATHOLOGY EITHER AND
UNDERSTANDING OF CLINIC SEEING
DIFFERENCES FROM PEOPLE IN
COMMUNITY STARTING OUT WITH
DEMENTIA FOLLOWING THEM TO DEATH
NOT SEEING DIFFERENCES IN
UNDERLYING PATHOLOGY ASSOCIATED
WITH ALZHEIMER'S AND SOMETHING
ABOUT STARTING LEVEL PLAYING A
ROLE IN HIGHER RISK OF
ALZHEIMER'S APPEARING TO BE
ASSOCIATED WITH BRAIN HEALTH AND
OUTCOMES COGNITION INFLAMMATION
AND NEURAL COGNITION IN NEURAL
PATHOLOGY AND INCLUDING
UNDER-REPRESENTED POPULATIONS
INCLUDING SOCIAL DETERMINANTS
ADVANCING SCIENCE MOVING TOWARDS
HEALTH EQUITY I SETTING STAGE
AND POLICY WORK TO HELP
ELIMINATE DISPARITIES AND
THANKING AND ACKNOWLEDGING
FUNDERS FOR WORK AND DIDN'T TALK
ABOUT FORMER P. 20 AND GOT ME
ON MAP FOR NIHD AND THOUGHT I
WOULD APPRECIATE THAT SUPPORT
AND PARTICIPANTS WE COULDN'T DO
WORK WITHOUT AND
INTERDISCIPLINARY AREA AND
THANKING COLLEAGUES AT RUSH AND
STRATEGIC PARTNERS AND THIS IS A
RESOURCE FOR THE FIELD AS I
SAID. I HOPE INVESTIGATORS HERE
WILL FIND INTEREST AND GOING TO
RESOURCE PORTAL WE HAVE AGING
OUTCOMES AND BLOOD AND BRAIN.
WHATEVER YOUR INTEREST MIGHT BE
WE HAVE SOMETHING FOR YOU.
THANK YOU. DO WE HAVE TIME FOR
QUESTIONS?
>>YES.
>> WE HAVE TIME.
>>THANK YOU FOR A WONDERFUL
PRESENTATION AND REALLY
IMPRESSIVE WORK AND I APPRECIATE
THE EMPHASIS ON DISCRIMINATION
AND DATA ON WHERE PEOPLE ARE
BORN AND HOSTED DIRECTOR SEMINAR
WITH DIRECTOR MARK HAIWARD WHO
SHARED SIMILAR FINDINGS OF
EFFECTS OF BEING BORN IN JIM
CROW SOUTH AS HE CALLED IT ON
FUNCTION IN OLDER ADULTS THAT IS
CONSISTENT. DID YOU COLLABORATE
WITH?
>>I HAVE A PAPER TOGETHER.
>>MAKES SENSE. THERE ARE
PARALLELS IN WORK AROUND LATINO
HISPANIC WORK AND IMMIGRANT
HISPANIC'S EXPLAINING THAT AND
WITHIN US TERRITORIES IN YOUTH
AND BORN AND GREW UP IN PUERTO
RICO COMPARED TO THOSE IN NEW
YORK OR CHICK AGROMOST LIKELY
ANY THINK MARGUERITA WHO
PRESENTED DATA HERE A FEW YEARS
AGO AND WAS AROUND DIFFERENCES
IN SOME BEHAVIORAL OUTCOMES THAT
WOULD REALLY IMPLY IMPORTANCE OF
EXPOSURE WITH CRUDE MEASURE
SAYING WHERE WERE YOU BORN?
>>RIGHT.
I WOULD VENTURE TO SAY MOST
CLINICIANS DON'T KNOW OR ASK
THAT QUESTION OF THEIR PATIENTS.
MAYBE NOT. MAYBE IT HAS
CHANGED, I GUESS.
>>OPENING UP FOR QUESTIONS FROM
THE -- I THINK I SEE KIMBERLY
NOW.
>>THANK YOU. THAT WAS REALLY
OUTSTANDING TO HAVE GREAT
OPPORTUNITY TO LEARN ABOUT YOUR
WORK EVEN IF WE ARE AT END OF
THE COUNCIL TOGETHER. I HAVE A
QUESTION IN LSAO'S PRESENTATION
THAT HE MENTIONED RECENT
WORKSHOP ON INCLUSION AND
RESEARCH PARTICIPATION AND HE
MENTIONED IMPLEMENTATION OF THE
TABLES THAT WE ALL COMPLETE OF
DEMOGRAPHICS ABOUT OUR RESEARCH
PARTICIPANTS. YOU SHOWED DATA
WE ARE ALL FAMILIAR WITH
PARTICULARLY IN AGING AND IN
OTHER FEEMDS ABOUT FIELDS ABOUT
CHALLENGES IN THIS AND DATA
REPORTING AND COUPLE THINGS.
ONE HOW DATA WE REPORT SHOULD BE
USE BD I FUNDERS AND REGULATORY
AGENCIES TO CREATE SOME
ACCOUNTABILITY AROUND WHO IS
PARTICIPATING IN STUDIES AND
ULTIMATELY COMPLETION OF STUDIES
OR ALSO APPROVAL OF DRUGS AND
REALLY WHAT ARE REGULATORY
LABORS AND ACCOUNTABILITY
POLICIES THAT NIH AND FDA SHOULD
BE USING AND THINKING ABOUT.
THE OTHER PIECE I'M OFTEN ASKED
IS WHAT -- HOW SHOULD WE BE
THINKING ABOUT APPROPRIATE
REPRESENTATION AND IF YOU SHOW
DATA AND SOMETIMES PEOPLE THINK
ABOUT DEMOGRAPHIC MAKEUP OF A
PARTICULAR MINORITIZED GROUP AND
ARE GROUPS THAT ARE
OVERREPRESENTED FOR PEOPLE WITH
PARTICULAR DISEASES AND THINKING
ABOUT WHAT ARE APPROPRIATE
REPRESENTATION FOR PEOPLE IN
STUDIES.
>>GREAT QUESTIONS, KIMBERLY.
FIRST IS I DON'T KNOW WHAT ARE
SORT OF REGULATORY POLICIES. I
THINK THERE IS ACCOUNTABILITY IN
STUDY SECTIONS PEOPLE MADE
PROMISES YOU COME BACK AND SEE
THEY DIDN'T FULFILL PROMISES NO
ACCOUNTABILITY AT ALL AND IS
CHANGING IN ALZHEIMER'S FIELD
MOVING TOWARDS ACCOUNTABILITY
MAKING SURE PEOPLE HAVE REGULAR
UPDATES TO RECRUITMENT EFFORTS
AND OTHER AREAS, THINKING ABOUT
THEM IT IS DEFINITELY NEEDED AND
SECOND QUESTION ABOUT
REPRESENTATION I TRY TO THINK
ABOUT IT NOT REPRESENTATIVE BUT
AS FAR AS COMMUNITY YOU ARE
LIVING IN BUT OUTCOME YOU ARE
LOOKING AT FOR ME ALZHEIMER'S
DISEASE IS SUPPOSED TO BE MORE
PREVALENT IN HIGHER RISK FOR
AFRICAN AMERICANS THAT SHOULD BE
OVERREPRESENTED IN STUDIES AND
OFTEN ARE NOT AND WE ARE NOT
GETTING A COMPLETE PICTURE WHAT
IS REALLY GOING ON AND SOMETIMES
I QUESTION ALZHEIMER'S DATA I'M
SURE THEY ARE RIGHT AND WHAT IS
DUE TO IS PROBABLY ISSUE; RIGHT?
WE HAVE TO THINK ABOUT IF
COMMUNITY IS AT RISK FOR A
PARTICULAR OUTCOME NO REASON TO
BE UNDERINCLUDED IN STUDY NOT
ENOUGH TO SAY 12% IN ILLINOIS
THAT IS NOT GOOD ENOUGH TO ME
I'M ONE PERSON SO.
>>TO EXTEND ON THIS WE TAKE
INCLUSION DATA SERIOUS LY THERE
IS TRIENIAL REPORT AND LAST ONE
WE MONITOR NIH FUNDED HUMAN
STUDIES AND HAVE BEEN STUCK
AROUND 30%.
IT IS NOT TERRIBLE BUT NOT GOING
UP IN 6 OR 7 YEARS AND WHAT YOU
PRESENTED IS EMBARRASSING IN OUR
INDUSTRY ISSUE IS AT MOST VAST
MAJORITY OF DRUG OR
PHARMACEUTICAL STUDIES ARE DONE
CONNECTED BY INDUSTRY AND THEY
HAVE TO -- ONES THAT HAVE TO
MODIFY THIS INVESTING PROPERLY
FOR DIVERSE TREATMENT AND WHERE
IT EFFECTS COMMUNITIES OF COLOR
AND WITHIN STATES AND
INTERNATIONAL STUDIES THAT THIS
GETS MORE AND MORE COMPLEX AND
FDA HAS THIS SNAPSHOT ACING
CRESS.
SO, IT CAN TELL YOU NOW WITH
REASONABLY GOOD ASCERTAINMENT
REQUIRING STUDIES UNTIL 27
TAEN-I THINK THEY DIDN'T
ACTUALLY REQUIRE HISPANIC LATINO
STUDY BE REPORTED DIDN'T KNOW
HISPANIC OR LATINO BACKGROUNDS
WERE THERE WITH STUDIES AND
PROGRESS IS PRESENT AND IS SLOW.
I THINK THAT 2020 PANDEMIC AND
DISPROPORTIONATE BURDEN AND
VACCINE TRIALS RAISE
CONSCIOUSNESS AND AWARENESS AND
GET SOME PEOPLE INTERESTED IN
THIS. INDUSTRY HAD MADE SIGNALS
THEY WANT TO DO MORE AND YOU
KNOW IT HASN'T HAPPENED YET. WE
WILL SEE.
>>YEAH. THANK YOU FOR THE
EXCELLENT PRESENTATION. AND
TERRIFIC PROJECT.
>>THANK YOU.
>>I WANTED TO -- I THOUGHT IT
MIGHT BE INTERESTING WHEN YOU
SHOWED DIFFERENCES BETWEEN A
BLACK AND WHITE IF YOU COULD
PROVE THE COMPARISON GROUP OF
THOSE WITH LOW SOCIOECONOMIC
STATUS ARE [INDISCERNIBLE] AND
LOWER LEVELS OF [INDISCERNIBLE]
TO SEE WHAT IS GAP BETWEEN THEM.
>>GREAT IDEA. WE CAN DO THAT
BECAUSE WE HAVE A PRETTY WIDE
RANGE OF EDUCATION AND IN OUR
WHITE PARTICIPANTS AND SES THERE
IS NOT REALLY OVERLAP AND BLACK
PARTICIPANTS HAVE LOWER SES. I
THINK IT WILL BE INTERESTING TO
LOOK AT EDUCATION TO SEE IF WE
SEE THE SAME TRAJECTORIES AND IS
DEFINITELY SOMETHING I CAN DO.
THANK YOU FOR THAT.
>>THE OTHER THING IS ABOUT
CONSERVATION AND LISTING A STUDY
WE ARE CURRENTLY WORKING AND
[INDISCERNIBLE] WITH POPULATION
AND MEXICAN MINORITY AND
OCCUPATION SEEMS TO BE A
PROTECTIVE FACTOR. FOR THOSE
WITH VERY LOW LEVELS OF
EDUCATION AND 0 NUMBER OF YEARS
TO 6 YEARS OF EDUCATION AND FOR
THOSE IT SEEMS THAT OCCUPATION
WITH COMPLEX COGNITIVE DEMAND,
YOU KNOW, HELPS THEM PROTECT.
SO, EVEN WHEN THEY HAVE LOW
LEVELS OF EDUCATION, IT THEY
ACTUALLY THE OCCUPATION HELPS
AND REVIEWS RISK.
>>THAT IS INTERESTING. LIKE A
COGNITIVE RESERVE?
>>YES.
>>WE IN OUR DATA WE HAVE A
STUDY WE ARE LOOKING AT
OCCUPATIONAL COMPLEXITY. WE SEE
THAT PEOPLE WHO HAVE LOWER
COMPLEXITY FOR THEIR OCCUPATION
AND HAVE FASTER RATES OF DECLINE
HAVE NOT LOOKED AT IT AS A
MEASURE OF SES OR EDUCATION TO
SEE IF THERE MIGHT BE AN
INTERESTING INTERACTION AND
POINTING TO LOOK AT INTERSECTION
OF DIFFERENT SES MEASURES THAT
IS A GREAT DIRECTION TO GO NEXT.
WE ARE NOT SAY TG IS PROTECTIVE
BUT IS OPPOSITE AND MAYBE WE
WILL SEE SOMETHING DIFFERENT IF
WE LOOK AT LOW AND HIGH SES.
>>AND INDICES PERHAPS OF
COGNITIVE COMPLEXITY I THINK
MIGHT BE BIASED WELL TOWARDS
[INDISCERNIBLE] HAVING
OCCUPATIONS AND USING COMPUTERS
THAT ARE HIGHLY CORRELATED TO
EDUCATION AND DON'T THINK THEY
EXCLUDE ALL DIFFERENT
CHARACTERISTICS THAT
[INDISCERNIBLE] HAVE.
>>YEAH.
>>WE HAVE CORE THAT IS SIMILAR
TO OURS MUCH YOUNGER STARTED IN
2015 ABOUT 300 LATINOS AND
HAVING SAME MEASURES LOOKING AT
QUESTIONS THERE AND SAYING
SOMETHING ABOUT IMMIGRANT
POPULATION VERSUS AFRICAN
AMERICANS IN THE US.
THANK YOU.
>>WHY HE.
>>THANK YOU FOR AN ABSOLUTELY
WONDERFUL TALK AND ONE COMMENT
AND QUESTION THAT IS REGARDING
OR WORKING WITH INDUSTRY ON
INCLUSION CRITERIA IN TRIALS IS
SOMETHING WE HAVE BEEN REALLY
TRYING TO INFLUENCE HOWEVER WE
CAN TO MAKE
BROADER APPLICABLE AND FROM
INDUSTRY TRIAL AND LARGE
PHARMACEUTICAL COMPANY REQUIRING
PAYPAL AND INCENTIVE AND PUTTING
IN INCLUSION CRITERIA MUST HAVE
A CREDIT CARD YOU NEED ONE TO
GET A PAYPAL ACCOUNT AND THEY
WERE APPALLED THAT WAS A
BUILT-IN SELECTOR THEY HAD AND
THEY MAY CHANGE POLICY THAT THEY
HAVE IN ENTIRE COMPANY FOR THAT.
>>GREAT.
>>WE NEED TO LOOK FOR BIG
CHANGES AND LITTLE CHANGES TO
MAKE ALONG THE WAY.
>>ABSOLUTELY.
>>MY QUESTION IS REALLY ONE OF
THE STATISTICS THAT ALWAYS IS SO
STARK TO ME IS IN LIFE
EXPECTANCY AND KNOW IN
MINORITIZED POPULATIONS WE SEE
LOWER LIFE EXPECTANCY.
HOW DOES IT RELATE TO RATES YOU
SHARED FOR ALZHEIMER'S AND ARE
YOU ABLE TO INCORPORATE THAT IN?
>>SOME STUDIES LOOK AT
COMPETING RISK OF DEATH AND WE
HAVE NOT LOOKED AT IN OUR
STUDIES IS SOMETHING WE NEED TO
THINK ABOUT AND I DON'T KNOW IF
YOU KNOW ABOUT THE CROSSOVER
EFFECT THAT HAS BEEN REPORTED
WHERE EVEN THOUGH MINORITIES
TEND TO HAVE LOWER LIFE
EXPECTANCY AT CERTAIN POINT
MAYBE 85 HAVE GREATER LIFE
EXPECTANCIES AND IS CROSSOVER
EFFECT AND DEBATE AND GOING OVER
THAT DATA AS WELL AND WE HAVE
HEALTHY PEOPLE LIVING TO 85 OR
90 AND DON'T KNOW IF WE HAVE
POWER TO LOOK AT COMPETING RISKS
AND SOME HAD. ARE. S AND
NATIONAL STUDIES LOOK AT THAT IN
OUR DATA.
>>JUST TO ADD A COMMENT ON
THAT. THE DIFFERENCE IN LIFE
EXPECTANCY BETWEEN AFRICAN
AMERICANS AND WHITES OVER AGE 65
WAS ELIMINATED IN 2008 AND 2009
THAT IS PREDOMINANTLY BECAUSE OF
BLACK WOMEN THAT ARE LIVING
LONGER THAT ACTUALLY CAME OUT OF
NIH DATA AS WELL AS NATIONAL
MORTALITY STATISTICS AND QUALITY
OF LIFE MEASURES OR BURDEN OF
DISEASE RELATED TO DEATH OF
COURSE THAT IS GREATER AMONG
AFRICAN AMERICANS AND CONCEPT OF
HEALTHY LIFE EXPECTANCY IS
COMING TO BECOMING EDUS THAT IS
SHORTER AND I DON'T KNOW WHAT
AFTER EFFECTS OF COVID WILL BE
ON THAT BENEFIT.
YOU -- THERE SHOULD BE -- EVEN
INDEPENDENT OF A CROSSOVER IS
SIMILAR LIFE EXPECTANCY AND WHEN
YOU GET TO 65.
>>KEN IS ONLINE. YOU WANT TO
--
>>THANK YOU FOR THE AMAZING
PRESENTATION, LISA.
OBSERVATION AND QUESTION.
WHEN I SEE YOUR DATA, I SORT OF
SEE THE EFFECTS OF DEPLETION
THAT IS PSYCHOLOGICAL DEPLETION
AND LONG-TERM EFFECTS OF
FAIRNESS AND WONDER IF ADDING
MEASURE OR TWO TO MEASURING
CONSTRUCTS THAT IS AT TERNTIVE
WAY TO VIEW WEATHERING I'M
FIGHTING SO MUCH AND SICK AND
TIRED OF BEING SICK AND TIRED
AND PEOPLE ARE DEPLETE THADZ
LEADS TO PHYSIOLOGIC EFFECTS AND
MY QUESTION IS WHEN -- WHEN I
LOOK AT THE DATA THAT YOU
PRESENTED BOTH ON BEING RAISED
IN THE SOUTH IN DESEGREGATED
SCHOOLS AND DATA ON JOHN
HENRYISM, I WONDER IF YOU HAVE
THOUGHTS ON WHAT INTERVENTIONS
WE COULD TRY TO BUFFER EFFECTS
OF JOHN HENRYISM EXCESSIVE
COPING AND LINGERING EFFECTS
GROWING UP IN THE SOUTH AND IS
NOTHING WE CAN DO THAT IS
IMPRINTED AND IS WHAT IT IS AND
WHAT DO YOU THINK ABOUT
INTERVENING SF?
>>THAT IS A GREAT QUESTION,
CANON. I WAS THINKING THAT
ACTUALLY WHEN LSAO PRESENTED HE
PRESENTED SO MUCH ABOUT
DISCRIMINATION FOR DIFFERENT
HEALTH OUTCOMES AND WONDER IS
THERE INTERVENTION THAT WE COULD
DO?
YOU CAN'T CHANGE HOW OTHER
PEOPLE TREAT YOU. YOU KNOW, YOU
CAN'T CHANGE. WE ARE TRYING TO
CHANGE STRUCTURES THAT TAKES
LONGER AND MAYBE WE CAN
INTERVENE HOW YOU RESPOND TO THE
DISCRIMINATION THAT MIGHT BE THE
AREA OF MOST EFFECT. YOU KNOW,
CLEARLY THE HIGH EFFORT FOR
COPING IS BAD FOR YOU LOOKING AT
CARDIOVASCULAR DISEASE OR BRAIN
HEALTH AND TEACHING PEOPLE TO
HAVE BETTER COPING SKILLS IN
HAVE FACE OF ADVERSITY OR
DISCRIMINATION AND DON'T WORK IN
INTERVENTION SPACE BUT DID A
TRIAL AND IS NOT NORMALLY WHAT I
DO AND LOOK TO ALL OF YOU TO
MAKE THOSE STUDIES THAT I THINK
IS PROBABLY THE BEST WE CAN DO
AND OTHER THAN CHANGING
STRUCTURES, THESE THINGS ARE
INSTITUTIONALIZED AND IS A
HARDER INTERVENTION TO CHANGE.
YOU CAN CHANGE HOW PEOPLE
RESPOND TO THINGS AND
PSYCHOLOGICAL DEPLETION IF YOU
HAVE MEASURES I WOULD LOVE TO
SEE WHAT THEY ARE. I THOUGHT
ABOUT ADDING THINGS LIKE
WEATHERING OR SOMETHING CALLED A
SUPERWOMAN SCHEMA AND THINGS TO
GET AT OTHER WAYS OF THIS SORT
OF PSYCHOLOGICAL DEPLETION AND
HOPE YOU KNOW OF SCALES I CAN
INCORPORATE THAT IS NICE OF
HAVING YOUR OWN COHORT TO ADD
THINGS WHEN YOU WANT TO.
>>I WILL SEND YOU. THANKS.
>>THANK YOU. PHIL?
>>FIRST, I WANTED TO JOIN THE
CHORUS OF ALL OF THOSE
COMPLEMENTING YOU ON YOUR WORK.
VERY, VERY IMPRESSIVE.
>>THANK YOU.
>>MY QUESTION IS I THINK IN ONE
OF YOUR SLIDES YOUCADED THAT
RATE TO ALZHEIMER'S DEMENTIA IS
10% IN YOUR COHORT. DO YOU KNOW
WHAT RATE IS AT AUTOPSY?
IS IT STILL 10% THAT IS
CHANGING?
>>SO, WHEN PEOPLE COME TO AUD
OPSY AND PEOPLE THAT HAVE DIED
AND ALZHEIMER'S DISEASE AND
PATHOLOGY THAT DEFINES
ALZHEIMER'S DISEASE, WE HAVE 30%
THAT HAVE ACTUALLY THE
UNDERLYING PATHOLOGY THAT IS
HIGHER THAN 10% SHOWING CLINICAL
SYMPTOMS AND PEOPLE ARE STILL
DYING I EXPECT NUMBER MIGHT GO
UP AND DEMENTIA IS A MIXED
PATHOLOGY PICTURE AND THERE IS
OTHER PATHOLOGIES IN THE BRAIN
AND TRYING TO SEE IF DIFFERENCES
IN RACE AND UNDERLYING PATHOLOGY
AND SO FAR WE ARE NOT SEEING
THAT.
>>THANK YOU. ONE OF THE
QUESTIONS IS THAT YOU KNOW IN
SOME [INDISCERNIBLE] PEOPLE USE
EXERCISE AS A STRESS RELIEVER.
DO YOU SEE BENEFITS OF EXERCISE
AS PEOPLE IN THIS COHORT?
>>NOT IN THIS COHORT. WE HAVE
REALLY CRAPPY PHYSICAL ACTIVITY
MEASURES AND WOULD LOVE TO DO
SOMETHING LIKE SOME KIND OF
WEARABLE ON PARTICIPANTS THAT
HAS BEEN DIFFICULT AND PEOPLE
LIVE IN INDIVIDUAL HOMES AND WE
GO TO THEIR HOMES AND I THINK
THAT PHYSICAL ACTIVITY WOULD BE
AN EASY WAY ESPECIALLY IN OLDER
ADULTS EVEN IF JUST WALKING TO
SEE HOW IT EFFECTS BRAIN HEALTH
THAT IS NOT SHOWING UP REALLY IN
DATA. QUESTIONS ARE NOT VERY
GOOD.
THANK YOU.
>>WE HAVE A QUESTION FROM ONE
NIH DEPUTY DIRECTORS.
>>THANK YOU SO MUCH FOR
ENTERPTAINING THIS QUESTION AND
WONDERFUL PRESENTATION FROM
NIDCR AND DENTAL INSTITUTE AND
QUESTION IS HAVE YOU CONSIDERED
STRATIFYING BASED ON ORAL HEALTH
OR PERIODONTAL DISEASE?
REASON I ASKED IS BECAUSE THERE
ARE SIGNIFICANT ORAL HEALTH
DISPARITIES OF SAME POPULATION
WITH AFRICAN AMERICANS HAVING
HIGHEST LEVELS OF DISEASES THAT
ARE ASSOCIATED WITH SYSTEMIC
INFLAMMATION AND HIGHER LEVELS
OF CRP AND DETECTION OF SOME
PERIODONTAL ORGANISMS IN BRAINS
OF INDIVIDUALS THAT HAVE
ALZHEIMER'S DISEASE AND ALSO
ASSOCIATION BETWEEN HAVING IT
THIS ORAL INFLAMMATION AND
NEURAL INFLAMMATION AND IS AN
EXCELLENT, EXCELLENT POINT THAT
I HAVE NOT LOOKED AT THAT. I
DON'T HAVE THAT EXPERTISE. I AM
SO OPEN TO WORKING WITH SOMEONE
WHO HAS THAT EXPERTISE.
ONE THING THAT REALLY HELPS THE
COHORT KEEP GOING IS WE GIVE
BACK OUR RESULTS.
SO, TO BE ABLE TO DO A DENTAL
EXAM AND MEASURE, YOU KNOW,
DIFFERENT ORAL ISSUES AND GIVE
THAT BACK TO PARTICIPANTS SO
THEY CAN ACTUALLY CHANGE
SOMETHING WOULD BE TREMENDOUS.
SO, IF YOU KNOW OF
COLLABORATORS, SEND THEM MY WAY.
>>YOU HAVE A DENTAL SCHOOL.
>>AT UIC. I KNOW.
>>THAT IS GOOD.
>>ANYBODY INTERESTED IN
DISPARITIES? I DON'T KNOW. I
HAVE TO LOOK.
>>YES. [INDISCERNIBLE] HAS
BEEN A WONDERFUL CHAMPION.
>>MY GOODNESS.
>>HAPPY TO TOUCH BASE AND
PROVIDE YOU GUYS.
>>PLEASE. THANK YOU SO MUCH.
>>THANK YOU VERY MUCH.
>>THAT IS IT. WE ARE DONE.
>>YES. YOU CAN -- THANK YOU.
THANK YOU. OUTSTANDING
PRESENTATION. NOW, WHAT I WILL
DO IS I WILL ALLOW YOU TO HAVE A
LUNCH BREAK. PLEASE, PLEASE
COME BACK AT -- [LAUGHING].
AT -- LET'S SEE. 12:45.
I WILL GIVE YOU A FEW EXTRA
MINUTES THERE. IF YOU CAN COME
BACK AT 12:45.
THE CAFETERIA, THEY HAVE BEEN
WAITING ON YOU.
THEY ARE PROBABLY LOOKING FOR ME
AND PROMISED A LOT OF THINGS AND
THANK YOU VERY MUCH AND PLEASE
RETURN AT 12:45 AND PLEASE BE IN
YOUR SEATS.
THANK YOU.
I'M DEBRA LINARES, PROGRAM OFFICIAL IN
BIOLOGICAL AND BEHAVIORAL
SCIENCES AND TITLE OF CONCEPT
I'M PRESENTING ON TODAY IS
MULTILEVEL PATHWAYS AND
INTERVENTIONS TO PROMOTE VACCINE
UPTAKE AMONGST POPULATIONS
EXPERIENCING HEALTH DISPARITIES
AND THANK YOU TO COLLEAGUES WHO
SUPPORTED ME ON THIS CONCEPT.
THERE WE GO. OBJECTIVE TO
INITIATIVE IS SUPPORTING
RESEARCH EXAMINING MULTILEVEL
PATHWAYS AND INTERVENTIONS
PROMOTING VACCINE UPTAKE AND
POPULATIONS EXPERIENCING HEALTH
DISPARITIES.
SO, VACCINES PROVIDE MULTIPLE
BENEFITS FOR PREVENTION AND
REDUCTION OF DISEASE AND SERIOUS
ILLNESS OR DEATH WHILE PROVIDING
PROTECTION AGAINST TRANSMISSION
AND DESPITE MULTIPLE BENEFITS OF
VACCINATION, DISPARITIES EXIST
AND CONTINUE TO GROW FOR VACCINE
UPTAKE AMONG ADULT AND CHILD
POPULATIONS WHO EXPERIENCE
HEALTH DISPARITIES THAT ARE
RACIAL AND ETHNIC MINORITY
PERSONS.
PEOPLE WITH LOW SOCIOECONOMIC
STATUS AND SEXUAL AND GENDER
MINORITY PERSONS AND INDIVIDUALS
LIVING IN RURAL AREAS AND FOR
EXAMPLE INFLUENZA OR FLU CAN
CAUSE SERIOUS COMPLICATIONS FOR
CHILDREN UNDER 2 AND PREGNANT
PEOPLE AND ADULTS UNDER AGE 65
AND PEOPLE WITH CHRONIC HEALTH
CONDITIONS AND RECEIPT OF
VACC
VACCINE -- ON LEFT SIDE OF THE
SLIDE YOU CAN SEE DATA SHOWING
INFLUENZA VACCINE DISPARITIES
FOR RACE AND ETHNICITY WITH
CHILDREN WITH LOWEST RATES OF
HISPANIC AND AMERICAN INDIAN AND
ALASKA NATIVES AND THOSE
INDIVIDUALS AND HIGHER
HOSPITALIZATION RATES AMONG
BLACK AND AMERICAN INDIAN AND
ALASKA NATIVE PERSONS AND
DISPARITIES EXIST AMONG
INDIVIDUALS IN RURAL AREAS AND
FROM LOWER SOCIOECONOMIC BACK
GROUNDS AND IS LIMITED
INFORMATION ON FLU VACCINE
UPTAKE. BECAUSE MANY OF THE
STATUSES INTERSECT AMONG
POPULATIONS IT IS VERY IMPORTANT
FOR US TO UNDERSTAND WHY THESE
DISPARITIES EXIST AND TO DEVELOP
EFFECTIVE STRATEGIES AND VACCINE
HESITANCY THAT IS DELAY OR
REFUSAL TO ACCEPT VACCINE
DESPITE IT BEING AVAILABLE
VARIES ACROSS VACCINE AND MAY
CHANGE OVER ONE TIME AND VACCINE
UPTAKE AND CULTURAL RELIGIOUS
FACTORS LACK OF ACCURATE
INFORMATION AND EXPOSURE TO
MISINFORMATION AND
DISINFORMATION ARE OTHER FACTORS
THAT COULD INFLUENCE VACCINE
UPTAKE AND FURTHERMORE UPSTREAM
SOCIAL DETERMINANTS OF HEALTH
SERVE AS BARRIERS TO VACCINE
ACCESS SUCH AS OUT OF POCKET
COSTS HAVING A PRIMARY CARE
PROVIDER GIVEN ONGOING
CHALLENGES AND DISPARITIES
IMPERATIVE TO UNDERSTAND AND
PROMOTE VACCINE UPTAKE.
SO, WE CONDUCTED A PORTFOLIO
ANALYSIS ON NIH FUNDED RESEARCH
PROJECT GRANTS ON VACCINES FROM
FISCAL YEARS 2017 TO 2022
FINDING 470 FUNDED STUDIES
INCLUDING POPULATIONS
EXPERIENCING HEALTH DISPARITIES
AND OVERALL WE FOUND A FEW
STUDIES ON MECHANISMS AND
INTERVENTIONS -- MOST FOCUSED ON
VACCINE DEVELOPMENT AND
RESPONSES TO VACCINES AND
LOOKING SPECIFICALLY AT NIMHG WE
FUNDED 45 GRANTS AND 18 ARE
INTERVENTIONS AND 15 ARE ITOLOGY
BASED AND PART OF ARE COVID-19
TESTING INITIATIVE AND NIMHD HAD
THREE NO SEES VACCINE UPTAKE
DURING FISCAL YEARS 2021 TO 2023
AND FUNDED 12 R01S THUS FAR
THROUGH NO SEES AND HOWEVER MOST
STUDIES FOCUSED ON COVID-19
VACCINE UPTAKE AMONG ADULTS AND
NIMHD WOULD LIKE TO EXPAND
RESEARCH ON VACCINES TO OTHER
AGES GIVEN ONGOING ISSUES WITH
VACCINE UPTAKE AND THUS FAR NIMH
GRANTS FOCUS ON FOLLOWING
VACCINES HERE COVID-19 INFLUENZA
AND HPV UPTAKE AND SEVERAL
STUDIES WORK WITHIN THE
COMMUNITY OR COMMUNITY-BASED
ORGANIZATIONS AND A FEW STUDIES
ARE FOCUSED ON AMERICAN INDIAN
ALASKA NATIVES SEXUAL GENDER
MINORITIES AND CHILDREN AND
PARENTS AND FROM A LIFE COURSE
PERSPECTIVE YOU CAN SEE CRITICAL
GAPS PERSIST AMONG VACCINE
UPTAKE AMONG POPULATIONS THAT
ARE EXPERIENCING HEALTH
DISPARITIES AND THEREFORE WE
PROPOSE THE FOLLOWING INITIATIVE
TO SOLICIT MULTI-DISCIPLINARY
PROJECTS EXAMINING MECHANISMS
AND INTERVENTIONS AT MULTIPLE
LEVELS PROMOTING VACCINE UPTAKE
AMONG THOSE EXPERIENCING HEALTH
DISPARITIES PROPOSING ETIOLOGY
BASED TOPICS INCLUDE
POLICY-BASED STUDIES ON
EFFECTIVENESS OF VACCINE
MANDATES AND PROMOTION EFFORTS
MULTILEVEL FACTORS INCLUDING
VACCINE HESITANCY AND UPTAKE
CULTURAL MIS AND DISINFORMATION
AND BELIEFS AND TRAITS
UNDERLYING VACCINE HESITANCY
USING ARTIFICIAL INTELLIGENCE
AND AI APPROACHES TO UNDERSTAND
HOW DISINFORMATION IS CREATED IN
TRANSMITTING UNDERSTANDING
VACCINE HESITANCY AT COMMUNITY
AND SOCIETAL LEVELS AND
UNDERSTANDING VACCINE HESITANCY
ACROSS THE LIFE COURSE AND
POTENTIAL RESEARCH TOPICS
INCLUDE EXAMINING CRITICAL --
PROMOTE VACCINE UPTAKE AND
EVALUATE EFFECTIVE VACCINE
RELATED MESSAGING TO PROMOTE
VACCINE UPTAKE AND ADDRESS
MISINFORMATION.
SO, FOR INTERVENTION STUDIES
POTENTIAL TOPICS INCLUDE STUDIES
WITHIN COMMUNITY AND HEALTH CARE
SETTINGS OR USING COMMUNITY
HEALTH WORKERS STUDIES USING
DISSEMINATION AND IMPLEMENTATION
FRAMEWORKS AND DIVERSE
POPULATIONS AND LIFE STAGES
DIGITAL BASED INTERVENTIONS AND
THOSE INCLUDING HARNESSING HSI
AND ECONOMICS UNDERSTANDING
EFFECTIVE STRATEGIES FOR VACCINE
UPTAKE AND SYSTEMS LEVELS
STUDIES AND RESEARCH TOPICS
INCLUDE INTERVENTIONS IF IN
HEALTH CARE SETTINGS TO PROMOTE
VACCINE UPTAKE ACROSS THE
LIFESPAN AND FAMILY OR EXCUSE ME
SYSTEMS LEVEL INTERVENTIONS
ADDRESSING BARRIERS TO VACCINE
ACCESS.
I WANT TO THANK MY COLLEAGUES
THAT HELPED ME WITH THIS. I
WILL OPEN IT TO COUNCIL FOR
FEEDBACK AND QUESTIONS.
THANK YOU.
>>DOCTOR, DO YOU HAVE COMMENTS?
>>JUST YOU A FEW POSITIVE
STRENGTHS ABOUT CONCEPT AND LIKE
THE INTERGENERATIONAL AND
INTERSECTIONAL FOCUS FOR EXAMPLE
RACE AND SEXUAL IDENTITY
INTERACT AND FOCUS ON
INTERVENTIONS NO THE JUST
DESCRIPTIVE STUDIES AND
POTENTIAL USING COMMUNITY HEALTH
WORKERS AND DIGITAL
INTERVENTIONS TO RECOGNIZE JUST
A TECHNICAL NOTE THAT --
>>DOCTOR, I THINK WE MIGHT HAVE
LOST YOU.
>>OKAY. THANKS SO MUCH. I
THINK THIS IS AN IMPORTANT AND
TIMELY OPPORTUNITY. I
APPRECIATE YOUR COMMENT.
>>SORRY.
>>MY LAPTOP DIED IN THE MIDDLE
OF IT. I GOT MY PHONE OUT.
>>OWE E NO.
I WILL TAKE A COUPLE SECONDS AND
FOCUS IS ON MULTILEVEL
INTERVENTIONS AND IN ADDITION I
THINK YOU MIGHT WANT TO ALLOW
WHERE APPROPRIATE SINGLE LEVEL
INTERVENTION SUCH AS DIGITAL
INTERVENTION THAT MIGHT ADDRESS
IN A TAILORED WAY SOMEONE'S
BARRIERS AND MISCONCEPTIONS, ET
CETERA.
THERE IS REALLY INTERESTING
STUDIES RECENTLY ADDRESSING
WHETHER OR NOT THE HEZ TANS
REGARDING COVID-19 VACCINE IS
DIFFERENT -- AND YOU SHOULD
INCUR AS A RESEARCH TOPIC STATE
VERSUS TRAIT ISSUE ARE DRIVERS
OF COVID-19 SIMILAR TO WHAT WE
HAVE SEEN HISTORICALLY WITH
OTHER VACCINES OR THERE IS A
SPECIFIC SET OF COVID-19
BARRIERS OR HESITANCIES THAT
SHOULD BE EXAMINED.
THERE IS SOME INTERESTING DATA
THAT IS ABOUT PERSONALITY VERSUS
ATTITUDINAL DIFFERENCE AND STATE
VERSUS TRAIT SHOULD ALSO BE
BROUGHT INTO PLAY IN THAT SENSE
AND FOR EXAMPLE DATA THAT
PERSONALITY ATTRIBUTES OF
DOGMATISM AND PARANOIA AND
REACTANCE WITH REGARDS TO NOT
JUST VACCINE BUT PERSONALITY
ATTRIBUTE ARE ASSOCIATED WITH
VACCINE UPTAKE AND RESEARCH AND
LOOKING AT WHETHER OR NOT IT IS
A LOOK AT GLOBAL HEZ TANS OR
UNIQUE TO COVID-19 ONE THING TO
CONSIDER INCLUDING AS A RESEARCH
PRIORITY IS PRESUMPTIVE
INTERVENTIONS THAT WOULD INCLUDE
WHEN A PATIENT COMES TO SEE A
PROVIDER THAT PROVIDER MIGHT SAY
WE HAVE VACCINE WAITING FOR YOU
IN THE WAITING ROOM AND PATIENT
HAS TO PUSH AGAINST THAT.
DEFAULT IS YOU WILL GET THAT.
THERE IS EVIDENCE THAT COULD BE
EFFECTIVE. THERE MIGHT BE
INTERESTING ETHICAL INFORMATION
THERE AND POPULATIONS WHICH THAT
CERTAIN INTERVENTION COULD MAKE
THINGS REVERSE AND PRIMIARY
RESEARCH AND FOR COVID-19
VACCINE AS WELL AS VACCINES MORE
GLOBALLY. THERE IS A FAIR BIT
OF WORK LARGELY FROM THE KAISER
ONGOING SURVEY DATA ABOUT
AUDIENCE SEGMENTS AND THERE IS
HUGE RACIAL DIFFERENCE IN
LATENCY CATEGORY AND AFRICAN
AMERICANS WERE MORE LIKELY WHEN
THE VACCINE FIRST CAME OUT TO BE
IN THE WAIT AND SEE CATEGORY AND
MOST PEOPLE GOT VACCINATED AND
WHITE FOLKS WERE LARGELY HEAVILY
NAVIGATED IN NEVER EVER OR
STRONG HESITANCY GROUP THAT
DIDN'T CHANGE AT ALL AND STAYED
AT 13% FOR THE ENTIRE TWO YEARS
THEY WERE MONITORING IT.
I THINK THAT IS GOOD ENOUGH FOR
ME. I LOST A MINUTE OR 2 IN MY
REBOOT. THANKS.
>>THANK YOU. WE WILL
INCORPORATE THE COMMENT.
>>AGAIN, I WANT TO MENTION IT
IS TIMELY AND IMPORTANT
OPPORTUNITY AND APPRECIATE
DOCTOR'S POINT IN UNDERSTANDING
IMPORTANCE OF COVID ON VACCINE
HESITANCY AND ACCEPTANCY AND
IMPLICATION FOR OTHER VACCINES
AS WELL AS UNDERSTANDING OF
POTENTIAL INCENTIVES AND
COMMUNITY HEALTH WORKERS IN
FACILITATING THOSE EFFORTS.
I ALSO APPRECIATE THE EMPHASIS
ON MULTILEVEL AND MULTIDOMAIN
INTERVENTIONS THAT IS A CLEAR
LESSON FROM INCREASING VACCINE
UPTAKE DURING THE COVID PANDEMIC
THAT IS REALLY CHALLENGES
WOUNDED IN SOCIAL DETERMINANTS
OF HEALTH AND LIMITED TO ACCESS
TO HEALTHCARE AND PERVASIVE
SURGE AND IN TERMS OF
ACCELERATING MISINFORMATION AND
DISINFORMATION AND CREATING
MISTRUST IN VACCINES AND
UNDERSTANDING WHAT IMPLICATIONS
ARE FOR HPV AND HEPATITIS B AND
OTHER VACCINES WILL BE REALLY
IMPORTANT AND OTHER THING I WANT
TO REALLY HIGHLIGHT IS POTENTIAL
OPPORTUNITY AND ENCOURAGING
APPLICANTS TO CONSIDER USE OF
IMPLEMENTATION AND DISSEMINATION
FRAMEWORKS AND ADAPTATION TOOLS
AND THOSE WITH HIGH PERCENTAGE
OF EJ LISH EFFICIENCY AND
COMMUNITIES WITHIN SECOND
GENERATION [INDISCERNIBLE].
AS NOTED EARLIER THERE IS
SUBSTANTIAL EVIDENCE AROUND
COMMUNITY CLINICAL LINKAGES
CLINICAL STRATEGY TO UNDERSERVED
COMMUNITIES AND ENCOURAGE THAT
EMPHASIS AND HAS BEEN REALLY
IMPORTANT AND EFFECTIVE SYSTEM
LEVEL INTERVENTIONS INTEGRATING
ERH BASED AND COMMUNITY HEALTH
WORKER STRATEGIES AND REALLY
APPRECIATE THAT EMPHASIS IN THE
CONCEPT AND OTHER THING TO NOTE
IS MANY LOW INCOME FAMILIES MAY
WITH YOUNG CHILDREN MAY NOT HAVE
A RIGHT PEDIATRICIAN OR RIGHT
CARE INCREASING ACCESS IN
SCHOOL-BASED CLINICS OR CLINICS
REACHING CHILDREN AND
ADOLESCENTS IS IMPORTANT AND USE
OF ALTERNATIVE MODELS AND IS
INCREASING EVIDENCE OF THE ROLE
OF PHARMACIES IN TERMS OF
INCREASING VACCINE UPTAKE FOR
INDIVIDUALS WITHOUT A REGULAR
HOME OR PROVIDER AND NOTING
ENTERING POST PANDEMIC PHRASE
THERE IS HEIGHTENED SCIENCE
AMONG MINORITY POPULATIONS AND
ENCOURAGING STRONG COMMUNITY
ENGAGEMENT STRATEGIES IS
IMPORTANT AND KEY AND NOTING IN
YOUR PRESENTATION THAT I THOUGHT
IT WAS VERY INTERESTING DATA ON
API FLU VACCINES THAT MIGHT
OBSCURE DIFFERENCES IN SUBGROUPS
AND AS WELL AS NATIVE HAWAIIAN
PACIFIC ISLANDERS AND ENSURING
APPLICANTS WITH DATA COLLECTION
AND TARGETED INTERVENTIONS ARE
REALLY IMPORTANT AND ENCOURAGING
USING SEXUAL ORIENTATION AND
GENDER IDENTITY MEASURES AND
APPLICANTS NOT TARGETING SEXUAL
AND GENDER MINORITIES TO JUST
IMPROVE DISAGGREGATED DATA AND
DATA COLLECTION AND STUDIES ON
YOU KNOW IN THOSE COMMUNITIES
AND OTHER THING TO NOTE IS AS WE
ENTER THIS NEW ERA OF GENERATIVE
ARTIFICIAL INTELLIGENCE AND
SCOMPLO
SCOMPLO RING POTENTIAL OF AI
THAT IS MOVING FAST ENCOURAGING
APPLICANTS IN THAT ROLE AND
TOOLS TO COMBAT THAT INFORMATION
AND LAST TO MENTION IS VACCINE
HESITANCY IS NUANCED AND WE HAVE
SEEN IN OWN EXPERIENCES WHERE
PARENTS MAY BE RECEPTIVE
RECEIVING VACCINES AND HAVING
THEM DONE FOR OLDER-AGED
CHILDREN AND THEY MIGHT HAVE A
DIFFERENT PERSPECTIVE FOR
YOUNGER AGED CHILDREN WITH
HIGHER RISK OF CERTAIN
CONDITIONS AND TRYING TO
UNDERSCORE THE ROLE OF CONTEXT
AND HOW IT MIGHT CHANGE WITHIN
FAMILIES BASED ON THE AGE OF THE
CHILDREN.
AND VACCINE HESITANCY IS VERY
CENTERED AT INDIVIDUAL AND
FAMILY LEVEL AND WE HAVE TALKED
ABOUT IT BROADLY IN TERMS OF
COMMUNITY-LEVEL IMPLICATIONS AND
WONDER IF THERE IS A BETTER
MEASURE OR THAT CAPTURES THAT OR
AT A COMMUNITY LEVEL AND IF
THERE ARE STUDIES OR EVEN JUST
THE ABILITY TO VALIDATE AS
CONSTRUCTS AND JUST AKIN TO THE
NOTION OF EXAMINING SOCIAL
SUPPORT AT THE INDIVIDUAL LEVEL
VERSUS SOCIAL CAPITAL OR
COHESION AND WANTED TO REALLY
CAPTURE NUANCES THAT OTHERWISE I
THINK WAS EXCELLENT.
>>THANK YOU SO MUCH. WE AGREE
WITH COMMENTS ABOUT
DISAGGREGATING. WE WILL INCLUDE
THOSE AS WE CONSIDER THIS.
THANK YOU.
>>DO WE HAVE ANY OTHER COUNCIL
MEMBERS WITH A QUESTION OR
COMMENT THAT IS REGARDING THIS
CONC
CONCEPT.
LET ME CHECK ON THEM.
OKAY.
SEEING NONE, CAN I HAVE A
MOTION? FOR ACCEPTANCE OF THIS
CONCEPT MOVING FORWARD.
>>I PUT FORWARD A MOTION.
>>CAN I HAVE A SECOND?
>>I SECOND.
>>ALL IN FAVOR BY SHOW OF
HANDS? ANY OPPOSED?
MOTION PASSES.
THANK YOU.
>>OKAY. ALL RIGHT. GOOD
AFTERNOON, EVERYONE. I'M
ARIELLE GILLMAN PROGRAM OFFICER
IN DEPARTMENT OF INTEGRATIVE
BIOLOGICAL SCIENCES AT NIMHD AND
HAPPY TO PRESENT THIS CONCEPT
TODAY ON INTERVENTIONS TO REDUCE
HEALTH DISPARITIES AND THANKING
COLLEAGUES NANCY JONES AND RINA
DAAS FOR WORKING ON THIS CONCEPT
WITH ME AND NIH SLEEP RESEARCH
COORDINATING COMMITTEE FOR THEIR
FEEDBACK ON IDEAS ON THIS
CONCEPT. OBJECTIVE OF PROPOSED
INITIATIVE IS SUPPORTING
NON-PHARMACOLOGICAL
INTERVENTIONS PROMOTING SLEEP
HEALTH AND DISPARITIES AND
MODIFIABLE FACTORS FOR HEALTH
DISPARITIES AND DISTAL OUTCOMES
AND POOR SLEEP QUALITY AND
IRREGULAR TIMING OF SLEEP AND
SLEEP OR CIRCKADIAN DISORDERS
ARE PROPORTIONALLY DISTRIBUTED
AMONGST POPULATIONS EXPERIENCING
HEALTH DISPARITIES AND FOR
EXAMPLE YOU CAN SEE ON GRAPH ON
LEFT-HAND SIDE HERE ACCORDING TO
CDC SURVEY DATA PREVALENCE OF
AGE ADJUSTED 7 HOURS OR LESS OF
RECOMMENDED SLEEP IS LOWER OR IS
HIGHER FOR GROUPS IN GOLD.
AMERICAN INDIAN OR ALASKA
NATIVES AND BLACK AFRICAN
AMERICANS AND NATIVE HAWAIIAN OR
PACIFIC ISLANDERS ARE LIKELY TO
REPORT INSUFFICIENT SLEEP
COMPARED TO ASIAN LATINO AND
WHITE AMERICANS THAT ARE SHOWN
IN PURPLE.
SLEEP DEFICIENCIES HAVE CURRENT
HIGHER RATES FOR UNEMPLOYED
INDIVIDUAL AND FOR THOSE WITH
LESS EDUCATION AND WHERE YOU
LIVE MATTERS COMING TO SLEEP
HEALTH YOU SEE DEPICTED ON
RIGHT-HAND SIDE AND GEOGRAPHIC
CLUSTERING OF HEALTH DISPARITIES
IN THE US AND -- IN SOUTHEASTER
AND APPALACHIAN REGIONS AND
LOWEST IS OBSERVED IN GREAT
PLAINS STATES SOCIAL
DETERMINANCE OF SLEEP HEALTH
BETWEEN REGIONS AND WE KNOW
IMPORTANTLY SLEEP DEFICIENCIES
INCLUDE -- ASSOCIATED WITH
NEGATIVE HEALTH OUTCOMES
HYPERTEJS STROKE DIABETES
OPIECETY MENTAL HEALTH
DISORDERERS AND POOR
COULDINGTIVE EMOTIONAL AND
SOCIAL FUNCTIONING OVERALL AND
OUTCOMES OBSERVED DISPARITIES
AND ALL THESE CONDITIONS ARE
TIED ALSO TO SOCIAL DETERMINANTS
OF HEALTH AND IS EVIDENCE THAT
TREATING SLEEP DISORDERS SUCH AS
OBSTRUCTIVE SLEEP APP KNEE AH IS
ASSOCIATED WITH IMPROVEMENTS IN
HEALTH AND METROBOLIC HEALTH AND
OVERALL QUALITY OF LIFE.
SO FROM 2017 TO 2022NIMHD
COLLABORATED WITH CENTERS TO
HAVE -- THROUGH PAR17 -- THESE
OPPORTUNITIES PROMOTED RESEARCH
TO UNDERSTAND SLEEP DISPARITIES
IN POPULATIONS WITH SLEEP
DISPARITIES FOCUS ON SOCIAL
DETERMINANTS OF HEALTH
INFLUENCING SLEEP AND DISTAL
HEALTH OUTCOMES AND 24 GRANTS
FUNDED ACROSS NIH INSTITUTES AND
9 WERE FUNDED BY NIMHD.
IN 2018 IN COLLABORATION WITH
NHLBI AND OBSSR HAD WORK TO
ADDRESS HEALTH DISPARITIES
PUBLISHED RESULTS FROM WORKSHOP
WERE PUBLISHED IN A WORKSHOP
REPORT IN 2020 AND FIRST
ITERATION OF FUNDING
OPPORTUNITIES I DISCUSSED
PREVIOUSLY ADDRESSED THE FIRST
STRATEGY THAT WAS DISCUSSED
DURING THAT WORKSHOP THAT IS
DEVELOPING AND PROMOTING
INTEGRATIVE RESEARCH TO
INVESTIGATE CAUSES AND
CONSEQUENCES OF HEALTH
DISPARITIES AND FEEL IT IS AN
OPPORTUNE TIME TO MOVE TO THE
NEXT CONCLUSION THAT IS THAT
THERE IS A NEED TO DEVELOP
INTERVENTIONS IN THIS SPACE.
WHOOPS.
YOU CAN FINALLY SEE ON THE RIGHT
HERE WE CONDUCTED A PORTFOLIO
ANALYSIS OF SLEEP INTERVENTIONS
FUNDED ACROSS NIH THAT IS A
PORTFOLIO ANALYSIS FROM 2018 TO
2022 AND IDENTIFIED 27 SLEEP
INTERVENTION STUDIES DURING THIS
TIME AND 2 OF WHICH WERE FUNDED
BY NIMHD AND 7R0I ONES FUNDED
ACROSS NIH AND IMPORTANTLY FEW
OF THESE SLEEP INTERVENTION
STUDIES HAD A FOCUS ON A
POPULATION THAT IS EXPERIENCING
HEALTH DISPARITIES AND THAT WAS
LESS THAN 1 IN FIVE STUDIES.
OF THOSE STUDIES, ONLY BLACK
LATINO OR LOW SES POPULATIONS
WERE REPRESENTED AND KNOW OTHER
GROUPS EXPERIENCE HEALTH
DISPARITIES AMERICAN INDIANS AND
ALASKA NATIVES AND UNDERSERVED
RURAL INDIVIDUALS AND FURTHER WE
KNOW THAT SLEEP DISPARITIES
EMERGE AS EARLY AS VERY EARLY
CHILDHOOD AND MAJORITY OF
STUDIES FOCUS ON ADULTHOOD AND
LESS SO ACROSS THE LIFESPAN.
SO, THERE ARE FOUR BASED ON
BACKGROUND BUILDING ON PREVIOUS
INITIATIVES IN THE AREA WE
PROPOSE INITIATIVE TO SUPPORT
DEVELOPMENT AND TESTING OF
MULTILEVEL DOMAIN INTERVENTIONS
PROMOTING SLEEP HEALTH REDUCING
HEALTH DISPARITIES MODIFYING
SLEEP AS A MODIFIABLE FACTOR FOR
DISPARITIES FOR HEALTH OUTCOMES
AND INITIATIVE TO FOCUS ON ONE
OR MORE NIH -- AND DISSEMINATION
OF RESULTS TO COMMUNITIES WOULD
BE ENCOURAGED AND FOR THIS
INITIATIVE WE ARE EMPHASIZING
NON-PHARMACOLOGICAL
INTERVENTIONS FOCUSING ON
MODIFYING SOCIAL BEHAVIOR
ENVIRONMENTAL AND STRUCTURAL
DETERMINANTS OF HEALTH TO
PROMOTE SLEEP HEALTH AND ARE
INTERESTED IN STUDIES TO
ENCOURAGE HEALTHY SLEEPING
BEHAVIOR AND DISORDERS SUCH AS
INSOMNIA OR SLEEP APP KNEE AH
AND CONSIDERING IMPORTANT SOCIAL
CONTEXT INFLUENCING HEALTH AND
DEFICIENCIES AND FAMILY SCHOOL
AND COMMUNITY FACTORS
COMORBIDITIES INCLUDING MENTAL
HEALTH COMORBIDITIES AND AGE OF
PARTICIPANTS ACROSS THE LIFE
COURSE AND WHETHER IMPORTANT
LIFE TRANSITIONS ARE INFLUENCING
SLEEP AS WELL AS THE
INTERSECTIONS BETWEEN ALL OF
THESE CONTEXTUAL FACTORS.
WE ENCOURAGE THE CONSIDERATION
OF MULTIPLE FACETS OF SLEEP
HEALTH INTERVENTIONS AND
MEASUREMENT INCLUDING SLEEP
QUALITY EFFICIENCY AND TIMING
AND WE WOULD ENCOURAGE OBJECTIVE
MEASUREMENT OF SLEEP THROUGH
WEARABLES AND OTHER METHODS WHEN
APPROPRIATE AND INTERVENTIONS
SHOULD BE BUILT UPON A
THEORETICAL AND CONCEPTUAL MODEL
AND EXAMINING MECHANISMS BY
WHICH THEY HAVE INTERVENTIONS OF
HEALTH OUTCOMES OF INTEREST AND
FINALLY I HAVE A LIST HERE OF
SOME EXAMPLES OF RESEARCH
PRIORITIES FOR THE INITIATIVE
THAT WOULD INCLUDE AND ARE NOT
LIMITED TO INTERVENTIONS
EVALUATING POLICIES PROMOTING
SLEEP HEALTH SUCH AS LATER
SCHOOL START TIMES INCLUDING
IMPACT ON SLEEP ACADEMIC
PERFORMANCE AND OTHER HEALTH
OUTCOMES AMONG CHILDREN AND
THOSE EXAMINING ENVIRONMENTAL
AND HIGHER LEVEL SOCIAL FACTORS
THAT ARE SUCH AS INTERVENTIONS
ADDRESSING THE HOME-BUILT
ENVIRONMENT THROUGH EXAMPLE
THROUGH WEATHERIZATION TO REDUCE
NEGATIVE IMPACTS OF HEAT
EXPOSURE ON SLEEP THAT IS ONE
EXAMPLE AND STUDIES COULD
INCLUDE COST EFFECTIVENESS
ANALYSIS.
WE ARE INTERESTED IN
INTERVENTION THAT IS MORE
EDUCATION OR HEALTH
COMMUNICATION BASED FOCUSING ON
INDIVIDUAL KNOWLEDGE SUCH AS
IMPROVING SLEEP HEALTH AWARENESS
AND LATER COURSE SLEEP AT
INDIVIDUAL AND FAMILY LEVELS AND
INCLUDING CLINICAL SETTINGS AND
NEED RESEARCH SPANNING LIFESPAN
NOT ONLY THAT CONSIDERS KEY LIFE
TRANSITION POINTS SUCH AS EARLY
CHILDHOOD PARENTHOOD
UNEMPLOYMENT AND PREAND
PERINATAL PERIODS AND
INTERVENTIONS CULTURALLY
IMPORTANT FOR -- DEVELOPING
TOOLS ANDEND USERS IN MIND AND
FINALLY INTERESTED IN HOW SLEEP
CAN IMPROVE DISTAL OUTCOMES FOR
HEALTH DISPARITIES AND SLEEPING
PRIMARY PREVENTION FOR MENTAL
AND PHYSICAL HEALTH CONDITIONS
AND STUDIES LOOKING AT MEDIATING
AND MODERATING INTERVENTION
EFFECTIVENESS THROUGHOUT
OUTCOMES AND INTERVENTIONS
TREATING SLEEP APP KNEE AH AND
INTERVENTIONS EXAMINING SLEEP AS
A MEDIATOR AND MODERATOR FOR
EFFECT OF PHYSICAL ACTIVITY OF
MENTAL HEALTH FITTING INTO THIS
INITIATIVE AND INTERVENTIONS NOT
INTERVENING DIRECTLY ON SLEEP
AND EXAMINING INDIRECT EFFECTS
OF INTERVENTIONS AND MENTAL
HEALTH INFORMATION THAT IS ON
SLEEP OUTCOMES WOULD FIT INTO
PRIORITIES FOR THIS INITIATIVE.
AND WITH THAT, I AM LOOKING
FORWARD TO THE COUNCIL'S
FEEDBACK.
>>THANK YOU VERY MUCH.
THANK YOU FOR THE OPPORTUNITY TO
REVIEW THIS IMPORTANT CONCEPT.
WHEN YOU LOOK BACK IN HISTORY
HOW SLEEP HAS BEEN EVALUATED IN
CLINIC ENVIRONMENTS AND AS WELL
AS RESEARCH FOR A LONG TIME WAS
THOUGHT TO BE A SYMPTOM OF
UNDERLYING PATHOLOGY AND IN
INSTANCES LARGER ROLE FOR HEALTH
AND WELLBEING IS BECOMING
APPARENT INCREASINGLY AND YOU
INCLUDE WITHIN CONCEPT LOOKING
AT BENEFITS TARGETING SLEEP AS
PRIMARY MEANS TO INTERVENTION TO
EFFECT IMPORTANT HEALTH OUTCOMES
AND LAST MONTH A GROUP FROM NEW
ZEALAND PUBLISHED MANUSCRIPT OF
SLEEP INTERVENTION IN INFANTS
THAT DECREASED RISK OBESITY AGE
3.5 AND ESSENTIAL ELEMENT OF
HEALTH AND GREAT NEED FOR
INTERVENTIONS AND ITEMS TO BE
IMPORTANT TO CONSIDER DEVELOPING
THIS CONCEPT IS A REFLECTED ON A
CONVERSATION I HAD RECENTLY WITH
PRIMARY CARE PROVIDERS AND
PEDIATRICIANS IN PARTICULAR AND
ASKED THEM WHAT TOOLS THEY
WISHED THEY HAD TO BEST TREAT
THEIR PATIENTS SLEEP WAS AT TOP
OF THE LIST AND CHALLENGES SLEEP
INTERVENTIONS REQUIRING TIME
TRADITIONAL FOR APPOINTMENT AND
RESEARCH ON INTERVENTIONS IS
DEVELOPED OUTSIDE OF THE CLINIC
ENVIRONMENTS THAT ARE ACTUALLY
SEEING IT THESE KIDS AND THINK A
GOOD AND IMPORTANT ELEMENT TO
POTENTIALLY INCLUDE FOR
APPLICATIONS WOULD BE
PARTNERSHIP WITH ENTITIES THAT
MAY BE ABLE TO INTEGRATE
INTERVENTIONS IN SERVICE
DELIVERY MODELS HOME VISITATION
PROGRAMS VICS AND CLINICS AND
ONE WAY TO GET INTERVENTIONS
FROM RESEARCH BASED TO
APPLICATION BASED. LOTS OF THE
SLEEP LITERATURE IS BASED ON
SELF-REPORT OUTCOME MEASURES
THAT WE TEND TO NOT BE VERY GOOD
EVALUATORS OF OUR OWN SLEEP AT
TIMES AND WHILE THOSE DO HAVE
VALUE ESPECIALLY IF LOOKING AT
QUALITY OF SLEEP AND OTHER
DIFFERENT INDICES THAT YOU
MENTION, THERE IS INCREASED
ACCESS TO WEARABLE DEVICES THAT
COULD BE USED TO MORE PRECISELY
MEASURE SLEEP ARKING TEXTURE
THAT WOULD HELP ADVANCE AND MOVE
THE FIELD FORWARDIN CORPORATING
COST EFFECTIVENESS MEASURES
PREVENTION AND TREATMENT OF
VARIETY OF OUTCOMES EFFICIENT
FOR STUDIES TO INCREASE COVERAGE
FOR SLEEP INTERVENTIONS AND
INFLUENCE POLICY AND SLEEP IS AN
OPPORTUNE TIME TO RETURN
RESEARCH RESULTS TO PARTICIPANTS
THAT IS BECOMING INCREASINGLY
IMPORTANT AREA RESEARCHERS HAVE
TO INTEND TO PLAN FOR DESIGNING
RESEARCH STUDIES AND RECOMMEND
SPECIFICALLY HIGHLIGHTING THIS
AS AN AREA FOR CONSIDERATION.
THANK YOU, AGAIN, FOR PUTTING OR
MOVING THIS FORWARD.
>>THANK YOU SO MUCH, DR.
ELLIOT. WE WILL ABSOLUTELY TAKE
GREAT COMMENTS INTO -- AND
INTEGRATE THEM INTO THINGS WHEN
WE MOVE FORWARD.
>>THANK YOU FOR THAT REALLY
IMPORTANT CONCEPT. I'M NOT A
SLEEP EXPERT LIKE MY COLLEAGUE
HERE. JUST A FEW ADDITIONAL
COMMENTS. ONE, YOU MENTIONED
THIS A NUMBER OF TIMES.
IT IS REALLY SOMETHING TO BE
HIGHLIGHTED IN YOUR CONCEPT AND
FOR ME CERTAINLY AS A CLINICIAN
IT GETS TO THE HEART OF WHAT IS
IMPORTANT THAT IS REALLY
MEASURING PROXIMAL OUTCOMES
INCREASED TO SLEEP DURATION AND
QUALITY AND FOCUS ON
INVESTIGATORS INCLUDING DISTAL
MEASURES OF OUTCOMES FOR THIS
AND YOU PROVIDED EXAMPLES OF
THAT AND VAST MAJORITY IF NOT
ALL STUDIES SHOULD TRY TO
INCLUDE MEASURES OF HEALTH
OUTCOMES BEYOND JUST SLEEP AND A
COUPLE COMMENTS THAT YOU FOCUSED
ON A WIDE RANGE OF INTERVENTIONS
INTERVENTION TARGET IMPACTING
SLEEP DIRECTLY AND THINGS
IMPACTING SLEEP AND IMPROVING
OTHER THINGS LIKE EXERCISE AND
DIET THAT IS GREAT AND FINALLY
WOULD SAY YOU TOUCHED ON THIS
THAT IS INCREASINGLY IMPORTANT
IN WORK WE DO THAT IS THINKING
ABOUT REALLY THE INTERSECTION OF
CONTEXTUAL FACTORS THAT ARE UP
THERE AND MEASURING SOCIAL
DETERMINANTS ENCOURAGING
INVESTIGATORS TO EXAMINE
EFFECTIVENESS OF INTERVENTIONS
THAT ARE FOR PATIENTS FOR WHOM
IS INTERSECTION OF FACTORS THAT
IS WORK AND COMORBIDITY IN
ADDITIVE WAY OF IMPACT AND SLEEP
OUTCOMES.
>>THANK YOU DR. JOHNSON. I
APPRECIATE THOSE COMMENTS.
WE WILL CERTAINLY INCLUDE THEM
MOVING FORWARD.
>>ARE THERE ANY OTHER COUNCIL
MEMBERS THAT HAVE A COMMENT OR
QUESTION THAT IS REGARDING THIS
CONCEPT?
>>SEEING NONE, DO WE HAVE A
MOTION?
>>I MOTION TO MOVE FORWARD THIS
CONCEPT FOR FURTHER DEVELOPMENT.
>>I SECOND.
>>ALL IN FAVOR? OPPOSED?
MOTION PASSES.
>>GOOD AFTERNOON, EVERYONE.
I'M A PROGRAM OFFICIAL IN
DIVISION OF CLINICAL HEALTH
SERVICES RESEARCH AT NIMHD AND
WILL PRESENT A CAN NEW CONCEPT
-- SERVING POPULATIONS
EXPERIENCING HEALTH DISPARITIES
AND HIGHLIGHTING THE TEAM THAT
HAS WORKED ON THIS CONCEPT WITH
ME INCLUDING DR. RATA DOGGER AND
DR. ARUNA AND DR. SIMERON AND
DR. NATHAN STINSON AND MARISSA
AVILA -- AND NIMHD WHO HAS
SUPPORTED AND THANKING
ADDITIONALLY COLLABORATORS AT
NINR AS WELL.
NEXT.
THE GOAL OF THE INITIATIVE IS
THREE FOLD. FIRST, TO
UNDERSTAND ETIOLOGICAL FACTORS
AT THE SYSTEMS LEVEL
CONTRIBUTING TO HEALTH CARE
WORKER WELLBEING AND WORKFORCE
CHALLENGES IN SETTINGS
EXPERIENCING HEALTH DISPARITIES
AND WHAT ARE SPECIFIC
CONTRIBUTING FACTORS TO BURNOUT
AND HEALTH CARE WORKER SHORTAGES
AND FACTORS PRO E- MOTING
RESILIENCE AND WELLBEING IN THE
WORKFORCE SETTING FEDERALLY
QUALIFIED CENTERS SAFETY NET
FACILITIES RURAL FACILITIES AND
FACILITIES TAKING CARE OF LARGE
PROPORTIONS OF PATIENTS
EXPERIENCING HEALTH DISPARITIES
IN IN-PATIENT AND OUTPATIENT
FACILITIES AND EVALUATING EFFECT
OF HEALTH CARE WORKER WELLBEING
AND WORKFORCE CHALLENGES ON
HEALTH POPULATIONS EXPERIENCING
HEALTH DISPARITIES AND NO. 3
SUPPORTING TARGETED MULTILEVEL
INTERVENTIONS ADDRESSING
WORKFORCE CHALLENGES PROER
MOTING WELLBEING IN HEALTH CARE
SETTINGS IN POPULATIONS THAT ARE
EXPERIENCING HEALTH DISPARITIES
.
NEXT
I WILL GIVE BACKGROUND.
HEALTHCARE WORKFORCE CHALLENGES
ARE OFTEN SYSTEMIC IN NATURE
INCLUDING A DIVERSE ARRAY OF
ISSUES SUCH AS BUT NOT LIMITED
TO ATTRITION AND WORKFORCE
SHORTAGES AND HEALTHCARE WORKER
BURNOUT LEADING TO DETRIMENTAL
EFFECTS OF PATIENT CARE AND
WELLBEING OF HEALTH CARE WORKERS
AND SURVEY PUBLISHED BY ELSEVIER
IN 2020244% OF HEALTH CARE
WORKERS PLAN TO LEAVE CURRENT
ROLE IN NEXT 2 TO 3 YEARS.
FACILITIES TREATING PATIENTS
EXPERIENCING HEALTH DISPARITIES
ARE PARTICULARLY SUSCEPTIBLE TO
WORKFORCE CHALLENGES FACING
LIMITED RESOURCES AND WORKFORCE
SHORTAGES THAT MAY EXACERBATE
HEALTH CARE WORKER BURNOUT --
DEPERSONALIZATION AND LOW SENSE
OF PERSONAL ACCOMPLISHMENT OF
WORK AND SURGEON GENERAL CAME
OUT WITH ADVISORY ADDRESSING
BURNOUT IN 20202 CALLING FOR
URGENT ACTION TO THIS ISSUE
ACCORDING TO SURVEY BY THE
AMERICAN MEDICAL ASSOCIATION AT
END OF 2021, NUMBER OF
PHYSICIANS EXPERIENCING BURNOUTS
SPIKED TO 63%. HOWEVER,
ALTHOUGH COVID WORSENED BURNOUT
AND WORKFORCE SHORTAGES BURNOUT
IS ISSUE PRE-EXISTING PANDEMIC
WITH 33 TO 55% OF NURSES AND
PHYSICIANS AND -- REPORTING
SYMPTOMS OF BURNOUT PRIOR TO THE
PANDEMIC ACCORDING TO NATIONAL
ACADEMIES OF MEDICINE GIVEN
LONGSTANDING NATURE OF ISSUES IN
EXACERBATING EFFECTS OF
PANDEMIC, IF IN 2022 NATIONAL
ACADEMIES OF MEDICINE LAUNCHED
NATIONAL PLAN FOR HEALTH
WORKFORCE WELLBEING HIGHLIGHTING
NEED FOR THRIVING WORKFORCE TO
DELIVER SAFE HIGH QUALITY AND
PATIENT CENTERED CARE.
AT NIH WE CONDUCTED PORTFOLIO
ANALYSIS ON BURNOUT THAT IS ONE
OF THE MOST PRESSING WORKFORCE
CHALLENGES EFFECTING HEALTHCARE
WORKERS WELLBEING THAT IS
ACCORDING TO THE SURGEON GENERAL
ADVISORY AND ACCORDING TO
NATIONAL ACADEMIES OF MEDICINE
AND LOOKED AT GRANTS FUNDED
BETWEEN 2012 AND EARLIER IN THE
YEAR, 2023. IN TOTAL WE FOUND 9
BURNOUT RELATED GRANTS FUNDED
ACROSS ENTIRE NIH. OF NINE
GRANTS, TWO PERTAIN TO HEALTH
DISPARITIES BOTH FUNDED BY NIMHD
AND LOW PROGRAM -- IMPACT OF
BURNOUT ON DIABETES OUTCOMES ONE
IN FEDERALLY QUALIFIED HEALTH
CENT AND OTHER IN HEALTH
PROFESSIONAL SHORTAGE AREA AND
BOTH BY SAME PI AND OF NINE
GRANTS ONE WAS R01 LOOKING AT
BIOMARKERS PREDICTING BURNOUT
AND COGNITIVE FUNCTIONING NEXT R
CLINICIANS NO THE RELATED TO
HEALTH DISPARITIES AND THIS
INITIATIVE WILL FOCUS ON
RESEARCH THAT IS INVOLVING
LONGITUDINAL STUDIES CLINICAL
TRIALS NATURAL EXPERIENCES MIXED
METHODS QUASI EXPERIMENTAL
DESIGNS AND QUALITY IMPROVEMENT
STUDIES FOCUSING ON NO. 1
UNDERSTANDING THE IMPACT OF --
IMPACT OF HEALTH CARE WORKFORCE
WELLBEING AND WORKFORCE
CHALLENGES ON BURNOUT ON
POPULATIONS EXPERIENCING HEALTH
DISPARITIES AND NO. 2 WILL FOCUS
ON ADDRESSING HEALTH CARE
WORKFOR CHALLENGES PROMOTING
WORKFORCE WELLBEING IN SETTINGS
SERVING THESE POPULATIONS AND
NOTING HEALTH CARE WORKER
DEFINED AS PHYSICIANS MEDICAL
WORKERS SOCIAL WORKERS MENTAL
HEALTH CARE WORKERS OCCUPATIONAL
THERAPIST AND PHYSICAL
THERAPISTS AND PROVIDERS HAVING
DIRECT PATIENT CARE INTERACTIONS
AND STUDENTS COULD ALSO BE
CONSIDERED. RESEARCH PRIORITIES
FOR THIS INITIATIVE COULD
INCLUDE BUT ARE NOT LIMITED TO
THE FOLLOWING AND STUDIES
EVALUATING ETIOLOGY OF BURNOUT
AND HEALTHCARE WORKFORCE
CHALLENGES AND SETTINGS
POPULATIONS EXPERIENCING HEALTH
DISPARITIES FOR EXAMPLE STUDIES
EVALUATING ECONOMIC FACTORS
CONTRIBUTING TO BURNOUT
WORKFORCE SYSTEMS ECONOMIC
UNDERINVESTMENTS IN WORKFORCE
SETTING SERVING POPULATIONS
EXPERIENCING HEALTH DISPARITIES
AND ROLE OF HEALTH IT AND
ELECTRONIC HEALTH RECORD SYSTEM
TEAM STRUCTURES AND
UNDERSTAFFING AND STUDIES AS
WELL AS EVALUATING EXTENT AND
IMPACT OF BURNOUT AND STAFF
SHORTAGES AND OTHER WORKFORCE
CHALLENGES IN SETTINGS SERVING
POPULATIONS EXPERIENCING HEALTH
DISPARITIES AND FOR EXAMPLE WHAT
ARE DIFFERENTIAL EFFECTS BY
DIFFERENT HEALTHCARE OCCUPATIONS
SUCH AS PHYSICIANS AND NURSES
AND DIFFERENTIAL EFFECTS WHAT
ARE THEY BY EXPERIENCE? JUST
SOMEONE COMING IN BEING A NEW
HEALTHCARE WORKER VERSUS SOMEONE
WITH MORE EXPERIENCE AND WHAT
ARE DIFFERENTIAL EFFECTS BY
MINORITY STATUS AND LEVEL OF
BURNOUT AND WHAT ARE
DISAGGREGATED EFFECTS OF COVID
AND OF PRE-PANDEMIC FACTORS ON
BURNOUT AND STAFFING SHORTAGES.
WHAT ARE DIFFERENTIAL EFFECTS OF
DIFFERENT DOMAINS OF BURNOUT AND
FOR EXAMPLE WHAT EFFECT DOES
EMOTIONAL EXHAUSTION HAVE VERSUS
DEPERSONALIZATION AND IS ALSO
IMPORTANT TO CONSIDER HOW
BURNOUT IS AND WELLBEING ARE
MEASURES.
ADDITIONALLY STUDIES EVALUATING
IMPACT OF WORKFORCE CHALLENGES
SUCH AS BURNOUT AND ATTRITION
AND NONCLINICAL DISEASE OUTCOMES
IN POPULATIONS EXPERIENCING
HEALTH DISPARITIES AND IMPACT
BURNOUT COULD HAVE ON DIABETES
MANAGEMENT CHOLESTEROL CONTROL
AND VARIOUS HEALTH OUTCOMES
STUDIES EVALUATING HEALTHCARE
WORKER BURNOUT AND WELLBEING
QUALITY OF CARE ACCESS TO CARE
AND UTILIZATION OF HEALTH CARE
SERVICES FOR EXAMPLE STUDIES
LOOKING AT MEDICAL ERROR RATE
PATIENT CLINICIAN SATISFACTION,
DELAYS IN CARE AND MISSED
APPOINTMENTS AND ER VISITS THAT
ARE -- THAT FOR AMBULATORY
CONDITIONS IN POPULATIONS
EXPERIENCING HEALTH DISPARITIES
AND STUDIES EVALUATING
MECHANISMS THAT WORKFORCE
BURNOUT CAN IMPACT HEALTH
POPULATIONS EXPERIENCING HEALTH
DISPARITIES FOR EXAMPLE
DEVELOPMENT OF COMPASSION AND
FATIGUE THAT IS IMPACTING
PATIENT CLINICIAN RELATIONSHIP
AND THUS HEALTH OUTCOMES AND
DEVELOPMENT OF TAILORED
INTERVENTIONS TO ADDRESS BURNOUT
AND WELLBEING OF HEALTH CARE
WORKERS AT SYSTEMS LEVEL AND FOR
EXAMPLE -- ON HEALTH OF HEALTH
CARE WORKERS IN HEALTH SETTINGS
IN PROVIDERS MEMBERS OF
POPULATIONS EXPERIENCING HEALTH
DISPARITY AND RACIAL/ETHNIC
MINORITIES.
ANG SKYTY DEPRESSION AND
SUICIDALITY AND HEALTH CARE
WORKERS AND PHYSICAL AFFECTS OF
STRESS MINORITY TAX STUDIES
EVALUATING RESILIENCE AND
PROTECTIVE FACTORS AND WELLBEING
AND STUDIES EVALUATING THINGS
LIKE FACTORS INCREASING PROVIDER
SATISFACTION OR THINGS LIKE
UNIONIZATION.
WITHOUT FURTHER ADO, THAT IS ALL
I HAVE AND WELCOME FEEDBACK FROM
COUNCIL MEMBERS. THANK YOU.
>>THANKS SO MUCH FOR THIS
CONCEPT. I LIKE THIS CONCEPT
AND THINK THERE ARE TWO
IMPORTANT POINTS OF EMPHASIS
HERE IN YOUR WORK THAT I THINK
REALLY ARE POTENTIALLY IMPACT
AND FOCUS ON HEALTH DISPARITY
POPULATIONS AND INSTITUTIONS
PARTICULARLY WHERE THEY RECEIVE
A LARGE PORTION OF CARE AND
FOCUS ON HEALTH CARE WORKERS
THAT ARE MEMBERS OF HEALTH
DISPARITY POPULATIONS THAT I
THINK ARE REALLY IMPORTANT
THINGS SINCE BOTH GROUPS ARE AT
RISK FOR IN CASE OF PATIENT POOR
OUTCOMES AND WORKERS NOT ONLY
POOR OUTCOMES BUT OTHER HARMFUL
CONSEQUENCES OCCURRING IN THE
WORKPLACE AND IN ADDITION TO
COMMENTS I THINK AS I READ THIS
I WAS CONCERNED THAT SCOPE WAS
WIDE AND SHOWS WORK OR POSITY OF
WORK THAT HAS BEEN DONE ALREADY
AND CERTAINLY SEEMS APPROPRIATE
TO THINK ABOUT UNDERSTANDING
MORE BETOLOGY AND MECHANISMS
IMPACT AS WELL AS UNDERSTANDING
POTENTIAL EFFECTIVENESS OF
INTERVENTIONS THAT YOU TOUCHED
ISSUES OF MEASURES THAT MIGHT BE
USEFUL TO PROVIDE EXAMPLES AND
APPOINT INVESTIGATORS THINKING
OF MEASURES OF WELLBEING AND OF
BURNOUT WHAT ARE THINGS YOU
MIGHT WANT THEM TO
OPERATIONALIZE OR USE IN
THINKING ABOUT THOSE CONCEPTS?
IN TERMS OF FACILITIES I LIKE
FOCUS ON SAFETY NET FACILITIES
AND COMMUNITY HOUSEHOLDS AND
BEING CLEAR IF INTERESTED ALSO
IN FACILITIES THAT MIGHT NOT
HAVE LABELS BUT HAVE A LARGE
POPULATION OF PEOPLE WHO
EXPERIENCE HEALTH DISPARITIES
AND IN TERMS OF SCOPE OF THE
SETTINGS.
IS IT OUTPATIENT OR IN-PATIENT
AND INTERESTED IN PRIMARY CARE
ONLY OR POTENTIALLY SPECIALTY
CARE DELIVERY AS WELL.
YOU REALLY HAD A NICE RANGE OF
CLINICAL AND DISEASE-SPECIFIC
OUTCOMES AS WELL AS THOSE
RELATING TO PROCESS LIKE MISSED
APPOINTMENTS OR SEEKING CARE
ELSEWHERE THAT IS REALLY
IMPORTANT AS WELL. I LIKE
MULTILEVEL FOCUS.
I THINK IT IS A EXAMPLE OF A --
PARTICULARLY AS YOU THINK ABOUT
WORK FORCE AND WELLBEING AS WE
THINK ABOUT INDIVIDUAL RESPONSES
TO THEIR WORK ENVIRONMENT AND
THINKING REALLY ABOUT HOW
ORGANIZATIONS THROUGH STRUCTURES
AND PROCESSES MIGHT ACTUALLY
REDUCE BURNOUT AND IMPROVE
WELLBEING FOR EMPLOYEES AND
ULTIMATELY IMPACT PATIENT
OUTCOMES THAT IS REALLY
IMPORTANT AND IN TERMS OF OTHER
AREAS TO THINK ABOUT, I THINK
YOU TALKED A LOT ABOUT THIS AND
INCLUDING MORE OF IT IN THE
WRITTEN CONCEPT IS INTEREST IN
VARIATION VARIATION AND BURNOUT
AND WELLBEING DIFFERS IN
POPULATIONS AND HEALTHCARE
WORKERS EXPERIENCING DISPARITIES
OR NOT AND BY SETTINGS OF CARE
AND SOMETHING THAT IS ABOUT
WORKING IN ONE SETTING AND
ANOTHER REDUCED RISK OF BURNOUT
AND RESPONSIBILITY FOR INSTANCE
MORE HELP THAT IS CERTAINLY ALSO
IMPORTANT AND GETTING AT HOW
VARIATION LEADS ULTIMATELY TO
VARIATION IN PATIENT OUTCOMES
AND FINALLY THINK THAT LAST
BULLET POINT ON SLIDE IS ONE
THAT WILL DEFINITELY DEVELOP AS
WE THINK A LOT ABOUT WHAT
HEALTHCARE WORKERS ARE GOING
THROUGH ON NEGATIVE SIDE AND
ENVIRONMENT THINKING ABOUT WAYS
IN WHICH INDIVIDUALS AND
ORGANIZATIONS HAVE MANAGED TO
PROMOTE WELLBEING AND WHAT
FACTORS ARE RELATE TODAY
RESILIENCE IN ALL LEVELS AND
WHAT ARE FACTORS WHEN THERE IS
NOT SO MUCH WELLBEING THAT WE
ULTIMATELY LIKE IMPACT ON
PATIENT OUTCOMES.
THANK YOU.
>>THANK SO YOU MUCH. WE WILL
INCORPORATE THAT WONDERFUL
FEEDBACK INTO THE CONCEPT.
>>THANK YOU VERY MUCH. THIS IS
AN INCREDIBLY IMPORTANT TOPIC
AND JOTTING DOWN NOTES I WILL
READ IN THE INTEREST OF TIME
PROBLEMS NATION FACES WITH THE
WORKFORCE ARE CRITICAL IN THIS
COUNTRY AND DESPERATELY FINDING
NEW NORMAL DISRUPTION THAT IS BY
COVID PANDEMIC AND APPLAUD
CONCEPT AND AUTHORS FOR CONCEPT
AND VISION OF WORK AND LIKE
BROAD VIEW OF CONCEPT. I WOULD
STILL GREATLY LIKE TO SEE THE
NUMBER OF TIMES WE TALK ABOUT
BURNOUT REDUCED THERE IS
OVEREMPHASIS ON BURNOUT IN WAY
YOU DESCRIBE THIS AND THING
ABOUT BURNOUT PUTTING IN
DEFINITION LOSS OF ENTHUSIASM
AND EXHAUSTION AND CYNICISM AND
PERSONAL ACCOMPLISHMENT LOSS AND
SEEMS TO ME IS LIKE BLAMING
VICTIM AND PROVIDERS ARE VICTIMS
HERE AND TERM BURNOUT BELIES
SYSTEMIC ISSUES IN HEALTHCARE
THAT ARE TRUE CAUSES OF
WORKFORCE PROBLEMS INCLUDING
PROVIDER BURNOUT AND HEALTHCARE
WORKFORCE ISSUES ARE BROADER AND
MORE COMPLICATED POINTING OUT
SINGULAR ISSUE OF HEALTH CARE
STAFF EXPERIENCING BURNOUT AND
CHALLENGES EXISTING BEFORE COVID
WILL CONTINUE TO EXIST EVEN
AFTER COVID IS LONG GONE THAT
HAPPENS ALREADY AND EFFECTS
HISTORICALLY MEDICALLY
UNDERSERVED COMMUNITIES --
INABILITY TO RECRUIT STAFF AND
SUPPORT WORKLOAD THAT COMES TO
SAFETY NET AND ADDITIONALLY IS A
COMMON EXPERIENCE OF
INEXPERIENCED STAFF COMING TO
WORK AND SAFETY NET HOSPITALS
AND COMMUNITY HEALTH CENTERS
GAINING EXPERIENCE THERE LEAVING
FOR LESS TAXING AND MORE
LUCRATIVE EMPLOYMENT FOR
PROFITABLE PARTS OF THE HEALTH
CARE SYSTEM AND HAVE TO LOOK AT
ECONOMICS OF THE HEALTH CARE
SYSTEM IF WE WILL UNDERSTAND HOW
IT FUNCTIONS AND ALL THIS IN MY
OPINION RESULTS FROM
UNDERINVESTMENT THIS COUNTRY
MAKES IN PAYING FOR CARE OF
THOSE UNENSURED AND REDUCE
PAYMENTS FROM PROVIDERS FOR
HEALTH CARE EXCHANGES --
PROVIDING SERVICES AND PROVIDING
SERVICES THROUGHOUT HEALTH CARE
SAFETY NET AND PAYMENTS DON'T
INCREASE IN RATES THAT ARE CLOSE
TO RATES OF ININFLATION FOR
PERSONNEL COSTS.
RESULT IS SAFETY NET
ORGANIZATIONS ARE FREQUENTLY
UNDERSTAFFED AND LOOKING AT
ETIOLOGY OF BURNOUT AND SUGGEST
WE INCLUDE FOCUS ON ECONOMICS OF
THE HEALTH CARE SYSTEM AS PART
OF THE ETIOLOGY AND FOR
ESPECIALLY PROVIDERS SERVING
POPULATIONS WE ARE CONCERNED
ABOUT THAT WILL HELP US
UNDERSTAND THINGS HAPPENING NOW
IMPACT IN SYSTEMS AND OTHER
PARTS OF FOR PROFIT HEALTH
SYSTEM AND SUPPORTS ENABLE
INSTITUTIONS TO OUTCOMPETE
SAFETY PROVIDERS FOR WORK FORCE
THEY NEED JOBS HAVE BECOME --
BURDEN ON STAFF AND NEW
INFORMATION COMING INTO EHR FROM
OUTSIDE SOURCES AND MEDICATIONS
PRESCRIBED ELSEWHERE AND
INFORMATION ON WHO FILLED
PRESCRIPTIONS AND WHO DIDN'T AND
MESSAGES COME IN BY DOZENS AND
QUESTIONS FROM PATIENTS AND SOME
ABOUT RECENT VISITS AND SOME TO
AVOID VISITS AND DOCTORS UNDER
STAFF UNDER CONSTANT SCRUTINY
FOR VARIETY OF PREVENTIVE HEALTH
MEASURES PART OF VALUE-BASED
PAYMENT SYSTEM PEOPLE ARE PAID
BASED ON THEIR OUTCOMES AND
THEREFORE REQUIRES REALLY STRONG
HEALTHCARE TEAMS THAT WORK
TOGETHER TO BUILD EXPERIENCE
TOGETHER.
SO, THE TURNOVER OF STAFF IS A
MAJOR DETRIMENT TO THE FORMATION
OF TEAMS AND THEIR ABILITY TO
ACHIEVE OUTCOMES THAT THEY ARE
LOOKING TO ACHIEVE.
WHEN ADEQUATE STAFFING IS IN
PLACE WE CAN'T OPTIMIZE CARE AND
DEMAND AN UNSUSTAINABLE EFFORT
FROM STAFF WHO ARE ON SITE AND
MANY OF WHOM ARE DOING WORK 2 OR
3 MORE PEOPLE DO TO VACANCIES IN
THE WORKFORCE.
WITH THAT AS A BACKGROUND, THIS
CONCEPT IS GOOD. I THINK IT
NEEDS TO BE DEFINED IN THE
CONTEXT OF LOOKING AT SOME OF
THE ECONOMICS AND I THINK THAT I
WOULD LIKE TO SEE IT REDUCE THE
USE OF THE TERM BURNOUT THAT I
THINK REALLY POINTS THEIR FINGER
AT PROVIDERS AS IF THEY WERE
SORT OF THE PROBLEM AND IN FACT
THEY ARE JUST THE VICTIMS OF THE
PROBLEM AND THINK THAT WE WANT
TO LOOK AT ETIOLOGIES OF
WORKFORCE ISSUES WAY YOU
DESCRIBE THEM BROADLY AND WHAT
IMPACTS WORKFORCE ISSUES THAT
THEY HAVE ON PEOPLE THAT ARE
MOST CONCERNED AND RESEARCH
REALLY NEEDS TO LOOK AND TEST
WAYS OF SORT OF MITIGATING THESE
ISSUES AND PEOPLE WILL HAVE TO
BE VERY CREATIVE ABOUT HOW TO DO
THIS AND IN CONTEXT OF CURRENT
ECONOMIC ENVIRONMENT THAT I
THINK WILL CONTINUE TO WORK
AGAINST THIS.
YOU DO MENTION STUDENTS IN WUNL
OF THE SLIDES THAT I THINK IS
REALLY IMPORTANT AND ONE THING
I'M ALWAYS CONCERNED ABOUT IS
NEGATIVE ATMOSPHERE THAT WE ARE
OR HAVE CREATED THROUGH
WORKFORCE SHORTAGES THAT
BASICALLY HAS IMPACT ON DESIRE
OF STUDENTS TO ENTER INTO THE
HEALTHCARE WORKFORCE AS DOCTORS
OR NURSES OR OTHER PERSONNEL AND
WE HAVE TO BE REALLY CONCERNED
AND IF WE DISCOVER STUDENTS NOW
ENTERING WORKFORCE PROBLEMS
CONTINUE TO GET WORSE AND WORSE
AND THAT TERM BURNOUT IS
SOMETHING THAT REALLY
DISCOURAGES PEOPLE AND WHO WANTS
TO GO WORK IN A PLACE OR STUDY
IN A PLACE WHERE PEOPLE ARE
QUOTE BURNED OUT.
IT IS NOT A GOOD WAY FOR US TO
BE DESCRIBING THE ENVIRONMENTS
THAT WE ARE TRYING TO CREATE,
YOU KNOW, FROM A POSITIVE IMAGE
OF IMPROVING WELLNESS BECAUSE OF
HOW IT COULD NEGATIVELY IMPACT
FUTURE PROVIDERS.
I SUPPORT IT THIS CONCEPT.
I WOULD LIKE TO SEE IT TWEAKED A
LITTLE BIT THAT IS REALLY I
THINK ON THE RIGHT TRACK AND WE
SHOULD SUPPORT IT. THANK YOU.
>>THANK YOU SO MUCH FOR YOUR
FEEDBACK, DR. CALMAN. YOU HIT
THE NAIL ON THE HEAD WITH LOTS
OF POINTS YOU MADE ABOUT
SYSTEMIC ISSUES WE ARE FACING
AND I APPRECIATE IT.
>>ARE THERE ANY OTHER COUNCIL
MEMBERS THAT HAVE COMMENTS OR
QUESTIONS REGARDING THIS
CONCEPT?
>>I LIKE THIS CONCEPT A LOT AND
WOULD LIKE TO UNDERSCORE THE
IDEA OF REFRAMING IT FROM
BURNOUT BASED ON WHAT NEIL
SHARED, THAT -- IN WORK WE HAVE
DONE AROUND HEALTH DISPARITIES
WORKING WITH COMMUNITIES AND
REMOVING STIGMA OF DISEASE OR
DEFICITS IS IMPORTANT TO REALLY
HELP SUPPORT EQUITY AND CHANGE
AND IS SORT OF ALIGNED WITH THE
NOTION OF MOVING TOWARDS
RESILIENCY OR SATISFACTION OR
WELLBEING OR IMPROVED QUALITY
WITHIN THE WORKPLACE.
ALSO, IMPROVE HOPEFULLY CARE
OUTCOMES FOR THE COMMUNITIES
THAT WE ARE SERVING AND THINKING
ABOUT FRAMING AND ALSO WANTED TO
UNDERSCORE THE POINT THAT DR.
JOHNSON MADE ALSO ABOUT MAYBE WE
ALSO WANT TO ENCOURAGE MORE
MEASURES AND I'M NOT FAMILIAR
WITH THE TOPIC AND THINK THERE
IS A LOT WE MIGHT WANT TO
UNCOVER AND UNDERSTAND.
>>THANK YOU.
>>I WILL ADD ANOTHER COMMENT
AND AGREE CERTAINLY WITH THE
IDEA TO HAVE A POSITIVE FRAME
AND THINK ABOUT WELLBEING AND
OTHER THINGS AND WANT TO ALSO
RECOGNIZE THAT LANGUAGE OF
BURNOUT IS THROUGHOUT THE
CURRENT LITERATURE AND AS
INVESTIGATORS LOOK FOR MEASURES
OR DESIGN US THAT IS A PIECE OF
LITERATURE THEY WILL WANT TO
CITE AS A FRAMEWORK FOR SOME OR
PROBABLY MANY OF THEIR STUDIES
AND WHILE ADDING A POSITIVE
FRAME REALLY RECOGNIZING CURRENT
LITERATURE FROM WHICH
INVESTIGATORS WILL PULL TO
DEVELOP MANY OF THE PROJECTS YOU
WILL SEE.
>>THANK YOU.
>>AN EXAMPLE OF SOME SETTINGS.
>>YEAH. DEFINITELY. THANK
YOU. I APPRECIATE EVERYONE'S
FEEDBACK.
>>I WILL SAY THAT IF YOU GO
BACK TO THE DEFINITION OF
BURNOUT IN YOUR FIRST SLIDE, I
THINK THAT IS ENOUGH TO SCARE
PEOPLE FROM NEVER ENTERING THE
FIELD OF HEALTH CARE ALONE.
THAT SCARES ME AND FEELS THAT
WHOLE DESCRIPTION OF -- WHERE IS
IT? IT IS NOT REALLY?
>>IN THE MIDDLE.
>>I THINK IT IS -- YOU KNOW,
THAT DESCRIPTION OF HE
WROTE IT DOWN DEPERSONALIZATION
CYNICISM AND SENSE OF LOW
PERSONAL SELF-ACCOMPLISHMENT A E
TO THINK OF AND PEOPLE CAN BE
THERE SHORT PERIODS OF TIME AND
ANYBODY THAT IS THERE IS NOT
GONE AND FUNCTIONAL IN HEALTH
CARE SYSTEM AND WE HAVE TO
REFRAME THIS IN A WAY TO BUILD
UP AND RECOGNIZE PROBLEMS IN WAY
THAT THEY COULD BE BUILT UP AND
STUDY THEM IN THAT WAY.
THIS IS A SYMPTOM THAT IS LARGE
THAT WE ARE OBSERVING AND IS
IMPORTANT TO LOOK AT UNDERLYING
CAUSE AS YOU STATE.
>>IT WOULD BE GREAT TO BILL THE
STATEMENT INTO THE CONCEPT TOO.
IT REALLY IS A SMALL AMOUNT OF
THIS THAT IS INTERPERSONAL OR
PERSONAL. THAT WOULD BE VERY
HELPFUL. THANK YOU.
>>THANK YOU.
>>ARE WE READY FOR A MOTION?
>>I MOVE TO APPROVE THE
CONCEPT.
>>SECOND IT.
>>BY SHOW OF HANDS, ALL IN
FAVOR?
>>OPPOSED?
MOTION PASSES.
>>THANK YOU.
>>THANK YOU ALL VERY MUCH.
>>WE WANT TO GIVE AN
OPPORTUNITY FOR RETIRING COUNCIL
MEMBERS TO GIVE A REFLECTION. A
BRIEF REFLECTION, I SEE. PEOPLE
ARE LOOKING AT ME AND A THEIR T
ON COUNCIL.
>>NEIL IT LOOKING AT ME AND
MEANS IT IS MY TURN AND LISA RE
RETIRING COUNCIL MEMBER THAT IS
GREAT AND IN TERMS OF REFLECTION
-- FOLLOWED UP WITH GEE I HAVE
SO MANY OTHER THINGS TO DO AND
SHOULD I TAKE ON ONE MORE THING?
I'M ABSOLUTELY GLAD I DID AND
HAD OPPORTUNITY TO SPEND MOST
COUNCIL TIME AT HOME ONLINE
RATHER THAN IN PERSON AND WE
HAVE ONE OR MAYBE TWO IN PERSON
MEETINGS BEFORE THE PANDEMIC
STARTED AND THINK THAT SIMILAR
TO LISA SOME REALLY GREAT THINGS
ABOUT BEING ON COUNCIL IS HOW
MUCH YOU LEARN ABOUT THE INNER
WORKINGS OF NIMHD AND KIND OF
INNER WORKINGS AND OTHER
INFORMATION ABOUT ASPECTS OF NIH
AND COUNCIL DISCUSSIONS AND
NEVER WOULD HAVE HAD OPPORTUNITY
TO GET INSIDE VIEW OF THAT.
OTHER PIECE THAT IS IMPORTANT TO
INTERACT WITH NIMHD STAFF AND
HAVING OPPORTUNITY TO MEET AND
INTERACT WITH LSAO AND OTHER
STAFF MEMBERS AND WELCOMING
MONICA WHEN SHE JOINS. I WAS
HERE WHEN SHE JOINED AND EXCITED
ABOUT THAT AND FINALLY THINGS I
WILL REMEMBER MOST IS
INTERACTIONS WITH COUNCIL
MEMBERS AND LEARNING A LOT ABOUT
WORK AND THEIR APPROACH AND ALSO
I THINK THAT WE ALL FEEL LIKE
FRIENDS AND FAMILY BY THE END
AND I CAN CALL THEM UP WHEN I
NEED THEM TO COME AND SPEAK AND
OTHER THINGS THAT MIGHT BE
IMPORTANT FOR CAREER PROGRESSION
AND LOOKING FORWARD TO REALLY
STAYING IN TOUCH AND THANK YOU
FOR THE OPPORTUNITY.
>>I WANT TO THANK NSL FOR
INVITING ME TO BE ON THE COUNCIL
AND ENJOYED IT AND IT HAS BEEN A
DELIGHT AND ONE OF THE BEST
THINGS ABOUT IT IS THE PEOPLE
THAT I MET BOTH NIH STAFF AS
WELL AS COUNCIL AND COLLEAGUES
THAT I THINK I HAVE MADE
RELATIONSHIPS THAT WILL BE
FRIENDS FOR A LONG TIME AND THAT
REALLY MEANS A LOT AND LEARNING
ABOUT HOW NIH WORKS AND OTHER
COUNCIL MEMBERS HAVE SAID AS
WELL AND MOST MAY KNOW THAT I
WORK AT HOWARD UNIVERSITY THAT
IS A FEW MILES IN THAT
DIRECTION.
SO, IF ANY OF YOU ARE EVER IN DC
AND WANT TO BE AT HOWARD
UNIVERSITY GIVE ME A CALL AND I
KNOW A PLACE WE CAN GET SOME
GOOD FRIED CAT FISH AND COLLARD
GREENS AND DEEP FRIED CORNBREAD.
LORD HAVE MERCURY.
>>[LAUGHING].
>>SO, NSAO, THANKS SO MUCH. I
APPRECIATE. IT HAS BEEN A JOY.
I ENJOYED IT A LOT. THANK YOU.
>>SO, I WILL REFLECT ON WHERE I
WAS WHEN LSAO MADE THE FATEFUL
CALL. I WAS ON VACATION IN ROAD
ISLAND RELAXING ENJOYING BEING
AWAY FROM WORK.
THE PHONE RANG. LSAO ASKED, YOU
KNOW, IF I WOULD BE INTERESTED
IN SERVING AND I DIDN'T REALIZE
HOW MUCH I DIDN'T KNOW ABOUT THE
RESEARCH WORLD UNTIL I CAME
HERE. I AM NOT A FULL-TIME
RESEARCHER. IT SHOULD BE
OBVIOUS TO EVERYBODY.
YOU KNOW, I SPEND MOST OF MY
TIME IN THE HEALTH CARE DELIVERY
SYSTEM AND HAVE LEARNED A
TREMENDOUS AMOUNT FROM YOU. I
KNOW I HAVE LEARNED MORE THAN I
HAVE BEEN ABLE TO SHARE BUT HAS
BEEN A GREAT EXPERIENCE.
I HAVE JUST REALLY ENJOYED THE
COMRADEREE OF ALL OF YOU FOLKS
AND THINGS I HAVE BEEN ABLE TO
LEARN. I JUST THINK THAT THE
HIGHLIGHT OF THE MEETINGS FOR ME
ARE YOU GOING THROUGH WHEN LSAO
GOES THROUGH THE -- THE SYNOPSIS
OF THE -- OF THE RESEARCH GRANTS
THAT HAVE BEEN GIVEN AND RESULTS
AND THINGS TO JUST SEE THE
BREADTH OF THE WORK THAT THE
AGENCY DOES.
AND REALLY SOME OF THE
ASTOUNDING RESULTS THAT WE HEAR
ABOUT AT EVERY MEETING.
I JUST FIND THAT TO BE REALLY
EYE-OPENING AND I AM SORRY THAT
WE ARE NOT ON ZOOM BECAUSE I WAS
-- I USED TO TAKE SNAPSHOTS.
AM I ALLOWED TO SAY THIS? I
USED TO TAKE SNAPSHOTS OF SOME
OF THE SLIDES SO I COULD STUDY
THEM AFTERWARDS AND LOOK AT THEM
AND SHARE SOME OF THE FACTS THAT
CAME OUT OF THE RESEARCH WITHOUT
HAVING TO READ THE WHOLE PAPERS.
SO, THEY WERE -- YOU KNOW, IT
WAS A WAY OF SHARING SOME OF NEW
INFORMATION THAT WAS SORT OF HOT
OFF THE PRESS AND FIND IT TO BE
REALLY IMPORTANT. I HAVE JUST
ENJOYED IT AND I WOULD HOPE THAT
THERE WILL BE REPRESENTATION OF
OTHER PEOPLE WHO ARE NOT
FULL-TIME RESEARCHERS AND
CONTINUE TO HAVE PEOPLE LIKE
THAT ON COUNCIL.
I DO THINK THAT THE PERSPECTIVE
OF PEOPLE WHO ARE, YOU KNOW,
DOING OUT IN THE COMMUNITY ARE
DOING WORK ON THE POPULATIONS
THAT WE CARE ABOUT THAT ARE
IMPORTANT BOTH TO PUT SOME
PERSPECTIVE -- A DIFFERENT
PERSPECTIVE ON SOME OF THE WORK
AND ALSO BECAUSE IT HELPS US
LEARN THINGS THAT WE WOULDN'T
HAVE OPPORTUNITIES TO LEARN
OTHERWISE.
I REALLY VALUE THIS AND HOPE
THERE WILL BE WAYS TO CONTINUE
TO STAY INVOLVED EVEN IF NOT
BEING ON COUNCIL AND WOULD BE
REALLY, REALLY HELPFUL.
THANK YOU VERY MUCH.
NATE, JUST TO BE IN YOUR
PRESENCE IS ALWAYS AMAZING. AS
TWO OLD GUYS PROBABLY IN THE
RO
ROOM.
>>THANK YOU. MY TIME ON
COUNCIL HAS BEEN SHORT. AS YOU
GUYS KNOW, I FILLED IN FOR
SOMEONE AND DO REMEMBER GETTING
THE E-MAIL FROM LSAO AS WELL AND
HAD TO READ IT A FEW TIMES AND
IT HAS TRULY BEEN AN HONOR EVEN
THOUGH I HAVE ONLY BEEN HERE A
YEAR AND A HALF TO MEET EACH AND
EVERY ONE OF YOU AND LEARNED SO
MUCH TODAY. I WROTE DOWN ALL
THESE IDEAS AND, YOU KNOW, I
HAVEN'T ATTENDED AN ALZHEIMER'S
TALK IN A WHILE AND 3 YEARS OLD
IS MY GERIATRIC POPULATION AND
PARALLELS OF THINGS YOU CAN TALK
ABOUT TO APPLY WITHIN OUR OWN
WORK HAS BEEN AN INSPIRATION TO
BE ABLE TO SEE AND ONE THING TO
SAY IS TO NIHD STAFF, THE WORK
YOU DO IS SO IMPORTANT AND TO BE
ABLE TO SEE PASSION AND TIME
THAT IT TAKES FOR YOU TO BRING A
CONCEPT FROM IDEA TO THE
ADVISORY BOARD AND TO FUNDING.
WE ARE ONLY SEEING LIKE VERY
MUCH THE TIP OF THE ICEBERG ON
ALL THINGS DO YOU. PLEASE KNOW
YOUR WORK IS APPRECIATED AND
SEEN AND I'M GUESSING THERE
MIGHT BE PIS THAT GIVE YOU A
HARD TIME ONCE IN A WHILE.
JUST CRAZY GUESS.
SO, HOPEFULLY YOU WOULD TAKE ALL
THOSE AND JUST MAGNIFY THIS
COMMENT BY 1,000.
THAT IS TRULY THE SENTIMENT.
SO, THANK YOU FOR ASKING ME.
>>KEN?
>>>>I ALSO VERY MUCH ENJOYED
LSAO'S TOP 10 PAPERS FROM THAT
QUARTER OR THREE MONTH PERIOD.
ALTHOUGH WE HAVE SO FAR TO GO, I
LEAVE THIS EXPERIENCE VERY
OPTIMISTIC AND I'M SO PLEASED TO
SEE HOW LSAO AND MONICA AND THE
TEAM REALLY LET DATA SPEAK FOR
ITSELF.
AND THE QUALITY OF THE RESEARCH
BOTH INTRAMURAL AND EXTRAMURAL
IS JUST OUTSTANDING AND REALLY
GIVES ME HOPE THAT WILL CONTINUE
TO CHISEL AWAY AND HAVE
EVENTUALLY TIPPING POINTS WHERE
THINGS WILL REALLY BEGIN TO
ACCELERATE AND LAST NOTE IS I
THINK BEING IN THIS WORLD FOR A
LONG TIME, YOU ALWAYS WONDER
WHAT IS THE RIGHT AMOUNT OF
ANGER AND HOW PISSED OFF SHOULD
WE BE ABOUT THIS?
AMAZING THE EXAMPLE YOU SAID
LSAO AND TO YOUR TEAM IS TO ME
THE EXACT RIGHT TO ENAND YOU
PRESENT DATA THAT IS OUTLANDISH
AND INCREDIBLY A ANNOYING AND
YOU DO IT WITH A TO ENTHAT HELPS
US GAIN MORE ALLIES AND MAYBE
ONE REASON THAT YOUR FUNDING HAS
GONE UP AND YOU PLAY IT SO
PERFECTLY AND THREAD THE NEEDLE
SO WELL EACH TIME AND THIS IS
ONE OF THE MOST I THINK
REWARDING EXPERIENCES OF MY
CAREER AND THANK YOU FOR THAT
PHONE CALL AND THAT I ALSO
REMEMBER WHERE I WAS WHEN I
RECEIVED IT. THANKS.
>>THANK YOU. I WILL NOW TURN
THE MEETING BACK OVER TO DR.
PEREZ ALVAREZ FOR CLOSING
REMARKS AND THE JOURNAL.
>>SO, THAT WAS A WONDERFUL WAY
TO BRING THIS MEETING TO A
CLOSE. THANK YOU FOR ALL YOU
HAVE DONE FOR THE INSTITUTE AND
ALL YOU HAVE DONE FOR NIH AND
YOU DO FOR OUR COMMUNITIES.
IT IS REALLY IMPORTANT TO US.
IT IS NOT -- YOU ARE NOT DONE
YET. YOU KNOW, WE WILL CONTINUE
TO ASK YOU TO DO THINGS.
DON'T GO AND HIDEAWAY.
AND EVEN RETIREMENT IS NOT GOOD
ENOUGH AND I HAVE TO ACKNOWLEDGE
A COUNCIL MEMBER EXOFISH YO THAT
IS NO LONGER ONLINE, CHRISTINE
HUNTER WHO IS ACTING DIRECTOR OF
OFFICE OF BEHAVIORAL SCIENCE
RESEARCH WHO IS RETIRING AT THE
END OF THE MONTH. FOR HER, I'M
ACKNOWLEDGING HER SUPPORT AND
HER OFFICE HAS BEEN AN IMPORTANT
PART OF THIS.
AND IN ALL SORT OF CORRECTING
THE RECORD, I DIDN'T ASK YOU TO
SERVE. I -- I SAID I WAS GOING
TO NOMINATE YOU.
BECAUSE ONLY THE SECRETARY OF
HEALTH AND HUMAN SERVICES CAN
ACTUALLY APPOINT YOU AS SPECIAL
FEDERAL EMPLOYEES AND NOW I HAVE
LEARNED TO MAKE SURE THAT WHEN
THIS INVITATION TO BE NOMINATED,
I HAVE BEEN TURNED DOWN, BY THE
WAY. IT HASN'T ALWAYS BEEN
AGREEABLE TO THE INDIVIDUAL, TO
WARN THEM IT MIGHT TAKE A YEAR
BEFORE YOU FIND OUT. SO, I
GUESS SOME PEOPLE GET QUITE
AVERAGE SHOUS ABOUT IT.
I HAVE ALSO JUST WANTED TO
REMARK THAT I LEARN A LOT FROM
THE MEETINGS AND LEARN A LOT
FROM EACH OF YOU. I THINK THAT
INSTITUTE HAS A CERTAIN UNITY OF
MISSION THAT ALLOWS US TO BE
MORE COHESIVE IN SOME OF THE
THINGS THAT WE DO.
WE DON'T WORRY ABOUT VERY MUCH
ABOUT YOU KNOW RESEARCH AT THE
CELL OR ANIMAL LEVEL. WE START
WITH HUMANS ONWARD.
SO, WE CAN ALL FEEL A CERTAIN
LEVEL OF EXPERTISE AND KNOWLEDGE
IN THAT AREA. YES. I -- YOU
COULD HAVE FOOLED ME, NEIL, THAT
YOU WEREN'T A FULL-TIME
RESEARCHER. I COME FROM A
CULTURE OF RESEARCHERS NEED TO
SEE PATIENTS IN ORDER TO BE PART
OF A UNIT AND TEACH, OF COURSE,
AND DO OTHER THINGS AND THINK
THAT IS -- THAT IS A MODEL I
REALLY APPRECIATE AND SUPPORT AS
A CAREER AND STRIVE TO MAKE SURE
IT IS THERE AND WE HAVEN'T ALSO
RELIED ON NHMD FUNDED SCIENTISTS
TO COME TO COUNCIL AND IS ROOM
FOR PUBLIC MEMBERS AND THINK
SOMETIMES, YESTERDAY ONE OF YOU
ASKED ME HOW YOU DECIDE WHO WILL
GO ON COUNCIL?
IT IS A PROCESS.
I THINK WE RARELY TAKE MISSTEPS
AND THINK VALUE AND QUALITY AND
DEDICATION HAS TO BE A GIVEN IF
IT IS NOT THERE, WE WON'T
NECESSA
NECESSARILY GO IN THAT DIRECTION
AND APPRECIATE ALL OF YOU AND
ALL THINGS YOU HAVE DONE IN
THESE FOUR YEARS.
IT HAS BEEN A SPECIAL TIME YOU
KNOW IN FORMATS AND WAYS OF
COMMUNICATING CHANGE AND
EXTERNAL WORLD REALLY TOOK A BIT
OF CHANGE ON US AND THINK AT ONE
POINT ONE OF THE MEETINGS,
SOMEONE SAID, WHAT DID YOU LEARN
FROM THE PANDEMIC AND WHAT DID
NMHT GET?
WE CONTINUE TO TALK ABOUT IT
ALTHOUGH LESS AND LESS AS TIME
GOES BY.
ONE OF THE THINGS THAT YOU KNOW
I WAS -- I AM VERY PROUD OF HOW
NIH RESPONDED TO THE PANDEMIC
AND THINK IT WAS A UNIQUE EFFORT
THAT WE ALL SORT OF SAID, WELL,
WHAT CAN WE DO?
EVERY SINGLE PERSON THAT I KNOW
AT THE AGENCY WAS REALLY PUSHING
THE LIMITS OF WHAT THEY COULD
DO. I KNOW THAT IN THE
HEALTHCARE WORLD, THAT WAS ALSO
THE CASE TO A LARGE EXTENT EVEN
THOUGH I DIDN'T LIVE IT AS YOU
-- AS SOME OF YOU DID.
AND I THINK THAT IS AN ADMIRABLE
RESPONSE AND STORY THAT SOME DAY
WILL BE MORE APPRECIATED RATHER
THAN THE TRANSIENT 15 SECONDS OR
WHATEVER IT IS THAT WE ARE --
THAT PEOPLE HAVE OF FAME THAT IS
REFLECTING BACK ON THAT TIME. I
THINK IT WILL BE A REALLY SHARED
EXPERIENCE THAT BONDS PEOPLE
TOGETHER AS TO HOW THEY ADDRESS
ISSUES AND WASN'T JUST COVID AND
PEOPLE DYING OR GOING TO
HOSPITAL AND DYING ALONE AND
FEAR THAT PERVADED THROUGHOUT
THE COMMUNITIES AND FEAR I KNOW
I HAD THAT I DIDN'T TALK ABOUT
THAT WE KNOW WILL HAPPEN IN THE
WORLD THAT IS A SORT OF
EXISTENTIAL THREAT TO HUMANITY
IS REALLY THE THING THAT I THINK
OR I FELT AT THE SAME TIME THAT
MY RATIONAL SIDE WAS SAYING, NO,
NO. THINK OF THE FLU PANDEMIC
AND 100 YEARS AGO IT WENT AWAY
AND 3 YEARS LATER WE ARE SORT OF
SEEING THE OTHER SIDE OF THE
PE
PEAK.
CHALLENGES HAVE BEEN SOMETHING
THAT HAVE GROWN ON US AND WE
HAVE MURDER OF GEORGE FLOYD EVEN
IF TRANSFORMED EVEN TEMPORARILY
AND PERCEPTION WHAT RACISM AND
DISCRIMINATION MEANT TO OUR
SOCIETY AND TO ALL MEMBERS OF
SOCIETY NOT JUST SOME OF THE
GROUP AND FOR A PROFOUND
REFLECTION IN MANY OF OUR
INSTITUTIONS TO REALLY THINK
WHAT SHOULD WE DO DIFFERENT?
NIH I THINK STEPPED INTO THAT
DISCUSSION AND CONTINUES TO DO
SO. I KNOW THAT MANY OF YOUR
INSTITUTIONS DID AS WELL. %
AND THEN, YOU KNOW, SORT OF OUR
MISSION NOW IS IN PART TO KEEP
THAT GOING AND ENERGY AND
ENTHUSIASM TO MAKE CHANGE THAT
WE LIKELY WITNESS THAT IS TO BE
SUSTAINABLE AND WE AIM FOR
INCREMENTAL GROWTH AND CHANGE
THAT IS ONE OF THE WAYS TO DO
IT.
SO, WE WILL MEET IN PERSON AGAIN
IN SEPTEMBER.
ACTUALLY, AUGUST 31ST/SEPTEMBER
1. WE BASE DATES ON
AVAILABILITY OF ROOMS, I THINK.
NOT TO SPOIL YOUR HOLIDAY
WEEKENDS.
AND WE LOOK FORWARD TO ENGAGING
DISCUSSION. WE WILL DO THIS
HYBRID THING BETTER AND I DO
ENCOURAGE AND WE WILL HAVE A NEW
GROUP OF COUNCIL MEMBERS AND
THOSE WHO WILL BE INVITED TO
COME TO THE MEETING, PLEASE DO
ATTEND IN PERSON. IT REALLY
MAKES A BIG AND QUALITATIVE
DIFFERENCE. WITHOUT ANY FURTHER
COMMENTS, I WANT TO THANK
EVERYONE FOR COMING AND WILL SEE
SOME OF YOU LATER THIS