I WANTED TO CALL TO ORDER AND
WELCOME EVERYONE TO THIS 59th
MEETING OF THE NATIONAL
UNIVERSITY COUNCIL ON MINORITY
HEALTH AND HEALTH DISPARITIES.
I WANT TO ALERT YOU FOR SOME
GENERAL ADVICE.
THIS IS OPEN TO THE PUBLIC AND
BEING BROADCAST LIVE ON THE NIH
VIDEOCAST NETWORK.
COUNCIL MEMBERS, WHEN YOU SPEAK,
PLEASE SPEAK SLOWLY AND
DISTINCTLY.
THE VIDEOCAST OBSERVERS AND NOTE
TAKERS WILL BE LISTENING TO HEAR
YOUR COMMENTS.
WE ARE RECORDING IT FOR THAT
PURPOSE.
AFTER YOU ARE RECOGNIZED TO
SPEAK, DR. RUSSO WILL PROM.
YOU TO DETECT AN AUDIO PROBLEMS.
NO NEED TO ASK IF YOU CAN BE
HEARD.
TO MINIMIZE BACKGROUND NOISE,
DR. RUSSO WILL LEAD THE ROLL
CALL.
DENISE.
>> THANK YOU, IN AN EFFORT TO
MINIMIZE BACKGROUND NOISE AND
MITIGATE BANDWIDTH, I WANT TO
REITERATE WHAT ELISEO SAID, WHEN
SPEAKING GO ON VIDEO AND THEN
OFF VIDEO AFTER YOU'VE COMPLETED
YOUR TALK.
PLEASE STATE YOUR NAME,
INSTITUTION OR ORGANIZATION,
AFFILIATION AND AN INTERESTING
TIDBIT YOU WOULD LIKE TO SHARE
WITH US TODAY.
AND TODAY WE WILL BEGIN WITH
EMMA AGUILA.
>> GOOD MORNING.
I'M ASSOCIATE PROFESSOR AT THE
SCHOOL OF PUBLIC POLICY AT THE
UNIVERSITY OF SOUTHERN
CALIFORNIA.
JUST BRIEFLY MY RESEARCH
EXPERTISE IS PROGRAMS IMPACT THE
HEALTH AND WELL BEING OF OLDER
ADULTS IN IMMIGRANT AND HISPANIC
POPULATION.
THANK YOU SO MUCH.
>> THANK YOU, EMMA.
NEXT WE'LL HEAR FROM DR. LISA
BARNES.
>> GOOD MORNING.
I'M LISA BARNES.
I AM AN ENDOWED PROFESSOR AT THE
RUSH ALZHEIMER'S DISEASE CENTER
AT RUSH UNIVERSITY MEDICAL
CENTER IN CHICAGO.
I DO EPIDEMIOLOGIC STUDIES OF
RACIAL DIFFERENCES AND RISK
FACTORS FOR ALZHEIMER'S DISEASE
AND OTHER CHRONIC DISEASES OF
AGING AND AN INTERESTING TIDBIT
IS THEY HAVE BEEN FOLLOWING
POPULATION OF OLDER BLACK ADULTS
NOW GOING ON YEARS 16 TO 20.
NICE TO BE HERE WITH YOU.
>> THANK YOU.
NEXT WE'LL HEAR FROM DR. ESTEBAN
GONZALEZ BURCHARD.
>> GOOD MORNING, EVERYONE.
I'M A TENURED PROFESSOR AT THE
UNIVERSITY OF CALIFORNIA SAN
FRANCISCO.
MY EXPERTISE IS PULMONARY AND
CRITICAL CARE AND GENETIC
EPIDEMIOLOGY.
I HAVE THE LARGEST STUDY OF
MINORITY CHILDREN IN THE UNITED
STATES WITH OR WITHOUT ASTHMA
AND STUDY HOW GENETIC ANCESTRY
AND RISK AND RESPONSE AND AN
INTERESTING TIDBIT I WORKED ALL
MY LIFE SINCE I WAS 9 YEARS OLD
AND WHILE I WAS WORKING IN
COLLEGE I GOT A CHANCE TO WORK
THE WORLD SERIES THE SAN
FRANCISCO GIANTS VERSUS THE
OAKLAND As AS A VENDOR AND THERE
1989 DURING THE EARTHQUAKE IN
THE UPPER DECK.
AN INCREDIBLE EXPERIENCE I'LL
NEVER FORGET.
>> THANK YOU VERY MUCH.
THAT WAS A WONDERFUL TIDBIT.
MOVING ON, DR. NEIL CALMAN.
>> HI, I'M A FAMILY PHYSICIAN
AND PRESIDENT AND CEO AND
FOUNDER OF THE INSTITUTE FOR
FAMILY HEALTH.
WE'RE A NETWORK OF OVER 30
FEDERALLY QUALIFIED COMMUNITY
HEALTH CENTER SITES IN NEW YORK
CITY AND UP THE HUDSON VALLEY.
I ALSO AM SYSTEM CHAIR FOR THE
DEPARTMENT OF FAMILY MEDICINE AT
THE MOUNT SAY -- SINAI MEDICINE
AND A DIRECTOR OF ONE OF THE
CDC'S REACH PROGRAM IN THE
BRONX.
I HAVE A ROCK AND ROLL BAND.
YOU CAN SEE MY MUSIC STUDIO IN
THE BACKGROUND AN I HAVE A GREAT
HARLEY DAVIDSON MOTORCYCLE I
LOVE TO RIDE IN MY SPARE TIME.
>> THANK YOU, NEIL.
NEXT, KIMBERLY JOHNSON.
>> I'M A PROFESSOR OF MEDICINE
AT DUKE UNIVERSITY MEDICAL
CENTER HERE IN DURHAM, NORTH
CAROLINA.
MY RESEARCH FOCUSES ON
ADDRESSING DISPARITIES AND
SERIOUS ILLNESS CARE FOR OLDER
AFRICAN AMERICANS AND LEAD THE
HEALTH DID IT DISPARITIES
RESEARCH CENTER.
I PANICKED WHEN I HEARD THE
TIDBIT THING.
I GREW UP IN MOUNT BAYOU,
MISSISSIPPI.
THE OLDEST HISTORICALLY ALL
BLACK DOWN IN THE UNITED STATES
AND THE SITES OF THE ONE FIRST
FEDERALLY QUALIFIED HEALTH
CENTERS.
>> THANK YOU.
NEXT WE'LL MOVE TO KEAWE'AMOKU
KAHOLOKULA.
>> HELLO PROFESSOR OF NATIVE
HAWAIIAN HEALTH IN HAWAI'I AND
LEAD THE PROGRAM CALLED PEOPLE
WHICH STANDS FOR CENTER FOR
PACIFIC INNOVATIONS KNOWLEDGE
AND OPPORTUNITIES.
SOMETHING INTERESTING ABOUT ME,
I GUESS I BELONG TO A NATIVE
HAWAIIAN CULTURAL GROUP TO
DEVELOP LEADERSHIP AMONG OUR
YOUNG MEN IN OUR COMMUNITY TO BE
BETTER FATHERS AND CHILDREN AND
GRANDCHILDREN TO THEIR
COMMUNITIES.
THAT'S ME.
ALOHA, EVERYONE.
>> NOW BRIAN MUSTANSKI.
>> I'M PROFESSOR AT THE FINEBERG
SCHOOL OF MEDICINE AT
NORTHWESTERN UNIVERSITY WHERE I
DIRECTOR THE INSTITUTE FOR
SEXUAL AND GENDER MINORITY
HEALTH AND WELL BEING WHICH IS A
UNIVERSITY WIDE INSTITUTE
FOCUSSED ON ADVANCING RESEARCH
ON LGBTQ HEALTH AND CO-DIRECTOR
THE THIRD CO-CENTER FOR AIDS
RESEARCH.
I'M INCREASINGLY INTO HOBBY
FARMING AND OVER THE LAST COUPLE
YEARS STARTED RUNNING A HOBBY
FARM WITH MY CLOSE FRIEND AND
IT'S A FANTASTIC COVID-SAFE
ACTIVITY WHERE YOU CAN MARK THE
PASSAGE OF TIME BY WATCHING
THINGS GROW IN THE SOIL.
I HIGHLY RECOMMEND IT TO ANYONE
INTERESTED IN GETTING INVOLVED.
>> THANK YOU, BRIAN.
DR. JOAN REEDE.
>> GOOD MORNING.
I'M DEAN FOR THE UNIVERSITY OF
PARTNERSHIP AT HARVARD MEDICAL
SCHOOL THOUGH I'M A PEDIATRICIAN
AND I GUESS AN INTERESTING THING
ABOUT ME THERE'S A PROGRAM I
STARTED MORE THAN 30 YEARS AGO
STOOD UP AS A 501C3 AND WE'VE
NOW REACHED 30 YEARS AND HAVE
REACHED OVER 15,000 STUDENTS
FROM ACROSS THE COUNTRY.
MY AREA OF WORK IS AROUND
WORKFORCE DEVELOPMENT AND
LEADERSHIP DEVELOPMENT.
THANK YOU.
>> THANK YOU VERY MUCH.
DR. WILLIAM SOUTHERLAND.
>> GOOD MORNING, EVERYONE.
MY NAME IS BILL SOUTHERLAND I'M
A PROFESSOR OF BIOCHEMISTRY AT
HARVARD UNIVERSITY AND I LOOK AT
DATA SCIENCE WHERE IT INTERSECTS
WITH MINORITY HEALTH AND HEALTH
DISPARITIES AND FOCUSSING ON
STUDYING AND UNDERSTANDING THE
BURDEN OF CHRONIC DISEASES IN
THE DISTRICT OF COLUMBIA AND FOR
AN INTERESTING TIDBIT I WOULD
SAY I CONSIDER MYSELF TO BE AN
AMATEUR HISTORIAN WHERE I FOCUS
ON THE SLICE OF AMERICAN HISTORY
THAT INCLUDES THE AFTER MATH OF
THE SLAVERY IN THIS COUNTRY
FOCUSSING ON THE DAY TO DAY
LIVES OF BLACK AMERICANS DURING
AND IMMEDIATELY AFTER SLAVERY.
THAT'S MY TIDBIT.
>> THANK YOU VERY MUCH.
I'M GOING TO CALL ON DR. KEN
RESNICOW NOW.
>> THANK YOU.
I SPLIT MY TIME AT THE
UNIVERSITY OF MICHIGAN BETWEEN
THE SCHOOLS OF PUBLIC HEALTH,
THE SCHOOL OF MEDICINE AND THE
CANCER CENTER WHERE I'M
ASSOCIATE DIRECTOR FOR COMMUNITY
OUTREACH AND HEALTH DISPARITIES
RESEARCH.
I'M AN INTERVENTION RESEARCHER
AND MOST MY WORK FOCUSES ON
EITHER MOTIVATIONAL INTERVIEWING
OR DIGITAL TAILORED
COMMUNICATION.
>> ANY TIDBIT.
>> I THINK THE FIRST GIG I HAD
WORKING RIGHT OUD OF GRAD SCHOOL
WAS WORKING WITH JEFF CANADA WHO
NOW HAS HAD A MOVIE MADE OF HIM
WORKING IN THE HARLEM CHILDREN'S
ZONE AND GETTING THE NICKNAME
KEN X.
THEY SAID THAT WAS THE ANGRIEST
WHITE MAN IN ALL OF HARLEM.
IT WAS A RUNNING JOKE AMONGST
OUR STAFF.
>> THANK YOU, KEN.
>> DR. CARMEN ZORILLA.
>> GOOD MORNING.
I'M AN OB-GYN AT THE UNIVERSITY
OF PUERTO RICO SCHOOL OF
MEDICINE.
I'VE BEEN WORKING WITH WOMEN
LIVING WITH HIV FOR THE PAST 35
YEARS.
I WAS PART OF THE GROUP THAT
ELIMINATE THE TRANSMISSION IN
PUERTO RICO AND NOW I'VE BEEN
WORKING ON COVID, TESTING SITES,
VACCINE CENTERS, ANYTHING THAT
HAS TO DO WITH EMERGING
EPIDEMICS.
SOMETHING ABOUT ME, NOT A
MUSICIAN BUT I PLAY PIANO AND
GUITAR, I LOVE TO COOK AND
ENTERTAIN AND COVID AFFECTED MY
SOCIAL LIFE OF HAVING DINNER
PARTIES.
I LOOK FORWARD TO A BETTER LIFE
AFTER THIS.
>> I'M THE EX OFFICIO MEMBER OF
THE DEPARTMENT OF DEFENSE AND
FAMILY PHYSICIAN AND MY
PORTFOLIO IN THE DEPARTMENT OF
DEFENSE IS BROAD ACROSS MANY
HEALTH ROLES FOR SERVICE MEMBERS
ACROSS ALL THE SERVICES.
TIDBIT, I DID MY FELLOWSHIP IN
PRIMARY CARE SPORTS MEDICINE AND
DID OLYMPIC GAMES MEDICINE AND
NOW CONSIDER MYSELF WORKING WITH
OUR WARRIOR ATHLETES IS ONE OF
THE HIGHLIGHTS OF MY CAREER AND
HAVE A STRONG SPORTS FOCUS AND
TRY TO PRACTICE WHAT I PREACH
AND WORK ON DIET AND EXERCISE.
>> DR. CHRISTINE HUNTER.
>> I'VE BEEN THE DIRECTOR FOR
THE OFFICE OF SOCIAL AND SCIENCE
RESEARCH AT NIH.
I'M A CLINICAL HEALTH
PSYCHOLOGIST BY TRAINING AND I
THINK IT I'M STRUGGLING WITH
WHAT'S INTERESTING AS A TIDBIT
FOR ME BUT I'M A DOG LOVER AND
SPENT THE FIRST 10 YEARS OF MY
CAREER AS AN ACTIVE AIR FORCE
OFFICER.
>> NOW TO OUR AD HOC MEMBERS
DR. MARIO SIMS.
>> WE'RE NOT HEARING YOU BUT
YOUR SCREEN DOESN'T SAY MUTE.
>> CAN YOU HEAR ME NOW?
>> YES.
>> SORRY, IT'S A BRAND NEW
COMPUTER.
>> YOU HAVE TO TURN UP THE
VOLUME THOUGH.
HOW IS THAT?
>> PERFECT.
>> I'M MARIO SIMS.
SOCIO EPIDEMIOLOGIST BY TRAINING
AND CHIEF SINCE OFFICER FOR THE
JACKSON HEART STUDY AND TENURED
PROFESSOR OF MEDICINE.
INTERESTING TIDBIT ABOUT ME, I
GUESS I'M A LOVER OF JAZZ
PARTICULARLY THE JAZZ TRUMPET.
I'VE BEEN WORKING ON PLAYING
THAT THE LAST 20 YEARS SO I'M A
WORK IN PRECIPITATION ALSO, MY
FAMILY AND I WERE VACATIONING IN
NEW YORK SO JUST BEFORE 9/11 AND
FOUND OUT 9/10 OCCURRED RIGHT
AFTER ME.
>> NEXT DR. AMY ELLIOTT.
>> GOOD MORNING.
THRILLED TO BE JOINING THE
COMMITTEE.
I'M THE CHIEF CLINICAL RESEARCH
OFFICER AT AVERA RESEARCH HEALTH
AND PROFESSOR IN THE DEPARTMENT
OF PEDIATRICS AND DIVISION
CHIEF.
MY PERSON RESEARCH INTEREST ARE
IN MATERNAL HEALTH AND MANAGE
THE NON-ONCOLOGY CLINICAL TRIAL
PORTFOLIO WHICH HAS BECOME MORE
INFECTIOUS DISEASE THAN I
THOUGHT I'D BE INVOLVED IN AS
I'M SURE MANY OF YOU AS WELL.
ANOTHER PIECE THAT'S IMPORTANT
FOR WHAT WE DO IN THE MATERNAL
CHILD HEALTH WORK WORK IN INFANT
MORTALITY AND PRENATAL EXPOSURES
AND HOW TO BRING CUTTING EDGE
RESEARCH CLOSE TO THE PRAIRIE
AND HELPING TRIBAL NATIONS BILL
INFRASTRUCTURE FOR THEIR VISION
OF RESEARCH IN THEIR AREA.
OUR DAUGHTER IS A PROFESSIONAL
DANCER IN NEW YORK CITY AND MY
HUSBAND AND I OFTEN USE THAT AS
A PROOF OF GENETIC VARIABILITY
WITH OUR STUDENTS BECAUSE IF YOU
LOOKED AT EITHER ONE OF US AND
OUR DANCING SKILLS IT WOULD NOT
BE A NATURAL EXTENSION WE SHOULD
PRODUCE A PROFESSIONAL ATHLETE
IN THAT WAY.
THANK YOU.
>> THANK YOU VERY MUCH.
>> DR. TRIHN-SHEVRIN.
AND I WORK AT DIVISION OF HEALTH
AND BEHAVIOR DEPARTMENT IN
POPULATION HEALTH AT NYU AND
PART OF THE CEL TEAM AND MY
FAMILY CAME AS REFUGEES FROM THE
VIETNAM WAR AND RECENTLY
CELEBRATED.
>> THANK YOU VERY MUCH.
VERY INTERESTING.
ELISEO, WOULD YOU LIKE TO SAY A
FEW WORDS BEFORE I BEGIN THE
REVIEW OF THE MINUTES?
>> YES, I'LL SAY A WORD ABOUT
MYSELF SINCE YOU HAD COUNCIL
INTRODUCE THEMSELVES THE REST OF
THE TABLE SHOULD INTRODUCE
THEMSELVES.
WE'LL GO DOWN THE ROSTER OTHER
THAN OUR I.T. SUPPORT.
>> OKAY.
>> WE'LL BEGIN WITH DR. HOOPER.
>> I'M MONICA HOOPER DEPUTY
DIRECTOR FOR NIMHD.
WELCOME.
>> I'M CHIEF OF THE PSYCHIC
REVIEW BRANCH OF NIMHD.
WELCOME.
>> NANCY JONES.
>> I'M A PROGRAM OFFICER IN
COMMUNITY HEALTH AND POPULATION
SCIENCES AT NIMHD.
>> KIMBERLY ALLEN.
>> GOOD MORNING, I'M KIMBERLY
ALLEN THE MINORITY OFFICER FOR
THE NIMHD.
>> NATHAN STINSON.
>> I'M THE DIRECTOR OF THE
DIVISION OF COMMUNITY HEALTH AND
POPULATION SCIENCE AT NIMHD.
>> ANGELA BATES.
SHE MAY NOT BE THERE.
HAVE I MISSED ANYBODY?
>> YOURSELF.
>> HELLO.
I'M DENISE RUSSO.
I AM CONDUCTING THIS MEETING AS
AN ADMINISTRATOR AND THRILLED TO
BE HERE.
I AM ON DETAIL FROM NICHD CHILD
HEALTH AND HUMAN DEVELOPMENT AND
IT'S AN HONOR TO BE WITH YOU
TODAY.
THANK YOU.
>> WELL INTRODUCE THE SPEAKERS
WHEN THEY PRESENT SO WE SHOULD
GO AHEAD WITH THE MINUTES.
>> OKAY.
THANK YOU VERY MUCH.
>> SO THE MINUTES FROM THE
SEPTEMBER 2021 COUNCIL MEETING
WERE POSTED IN ECB.
HAVING REVIEWED THE MINUTES, ARE
THERE ANY QUESTIONS, CONCERNS OR
CORRECTIONS FOR THESE MINUTES?
PLEASE RAISE YOUR HAND OR JUST
SPEAK OUT.
SEEING NONE IN THE CHAT BOX, MAY
HAVE A MOTION TO APPROVE THE
MINUTES FROM THE SEPTEMBER
COUNCIL?
>> I MOVE.
>> SECOND.
>> GREAT.
ALL IN FAVOR SUBMIT A YES OR Y
AND OPPOSED SUBMIT AN "N" OR A
NO AND WE'LL HAVE THE COUNT
MOMENTARILY.
HAVE ALL THE COUNCIL MEMBERS
VOTED.
THE AD HOC WOULD NOT VOTE THIS
TIME JUST THIS MEETING.
AFTER HAVING BEEN MOVED AND
PROPERLY SECOND THE MINUTES FOR
THE SEPTEMBER 2021 ADVISORY
COUNCIL MEETING ARE APPROVED.
THANK YOU.
I'M GOING MENTION THE FUTURE
MEETING DATES.
THEY ARE LISTED ON THE AGENDA.
AFTER REVIEWING THE DATES PLEASE
LET US KNOW IF THERE IS A DATE
YOU ABSOLUTELY CANNOT MAKE.
IT IS VERY IMPORTANT WE HAVE A
QUORUM OF MEMBERS AT EACH
MEETING TO CONDUCT THE BUSINESS
OF THE INSTITUTE.
AND THERE IS A POLICY THAT
ALLOWS FOR A COUNCIL MEMBER TO
HAVE ONE ABSENCE PER CALENDAR
YEAR.
PLEASE ALSO NOTE IT'S THE POLICY
OF NIH A MEMBER CANNOT SERVE ON
PEER-REVIEWED PANELS WHILE
SERVING AS A COUNCIL MEMBER.
I'M TURN IT BACK TO
DR. PEREZ-STABLE.
THANK YOU.
>> THANK YOU SO MUCH, DENISE.
THANKS EVERYONE FOR TAKING THE
TIME TO BE HERE.
I REALIZE EVERYONE'S GOT A BUSY
SCHEDULE BUT AS I TRY TO
PERSUADE EACH YOU TO JOIN OUR
ADVISORY COUNCIL I TRY TO
EMPHASIZE IT'S ACTUALLY NOT THAT
MUCH WORK AND FUN AND HELPFUL TO
ME AND NIMHD LEADERSHIP IN
GUIDING OUR FUTURE.
I'M ELISEO PEREZ-STABLE AND AS
MY OWN INTRODUCTION, I'M
ORIGINALLY FROM CUBA.
I'M AN IMMIGRANT TO THE U.S.
I CAME AS A CHILD AND GREW UP
BETWEEN PITTSBURGH, MIAMI AND
SAN FRANCISCO WHERE I DID MY
WHOLE PROFESSIONAL CAREER.
I WAS AT THE AMBULATORY CARE
CENTER AT UCSF IN THE 1989
EARTHQUAKE AND WILL NEVER FORGET
THAT DAY AND AM A GENERAL
INTERNIST BY BACKGROUND AND
RELATED TO MINORITY HEALTH AND
LATINO HEALTH AND DISPARITY
RESEARCH SINCE I START MID
RESEARCH FELLOWSHIP BACK IN
1981.
A COUPLE TIDBITS I'M AN
UNABASHED CAT LOVER AND
COHABITED WITH CATS ALMOST ANY
ENTIRE ADULT LIFE AND I LOVE
MOVIES AND OFTEN CHANNEL LIFE
LESSONS THROUGH THAT AND I LOVE
MUSIC BUT HAVE ZERO TALENT IN
THAT REGARD I MOSTLY ADMIRE.
I'LL DO MY OFFICIAL REPORT FOR
THIS COUNCIL.
I'LL BE SHARING MY SCREEN AND
HOPEFULLY WE'LL HAVE TIME FOR
CONVERSATION AT THE END OF THIS.
DR. COLLINS RETIRED AND HE WENT
BACK TO HIS LAB AND WE HAVEN'T
HEARD MUCH FROM HIM BUT IN HIS
RESEARCH LAB AT NHD RIV AND HAS
TOPICS TO ADDRESS ON THE
NATIONAL STAGE.
HE WAS THE LONGEST SERVING NIH
DIRECTOR SPANNING 12 YEARS,
THREE PRESIDENCIES AND HE WAS
BUSY TO THE LAST MINUTE INVOLVED
IN MEETINGS WITH APPROVALS AND
THINGS.
FRANCIS HAS BEEN A
TRANSFORMATIONAL LEADER.
I'M PRIVILEGED TO HAVE BEEN
WORKING UNDER HIM AND PROBABLY
THE MOST IMPORTANT AND EXCITING
PART OF MY CAREER IN HEALTH AND
MED SPIN -- MEDICINE.
YOU CAN LOOK AT THE VIRTUAL
FAREWELL MADE TO HIM THERE'S A
VIDEOCAST LINK TO HIM AND
THERE'S A NUMBER OF
PERSONALITI
PERSONALITIES WHO TOOK THE TIME
TO SAY SOMETHING.
I WON'T TELL ALL THE PEOPLE WHO
CAME UP BUT SPANS QUITE A
SPECTRUM FROM SCIENCE, HOLLYWOOD
AND YES, ROCK MUSICIANS AND
OTHERS.
WHEN NEIL SAID HE HAD A ROCK
BAND AND HARLEY IT SOUNDS LIKE
YOU WERE CHANNELLING FRANCIS
COLLINS AS HE ALSO CAME TO WORK
IN HIS HARLEY ONCE IN A WHILE
AND HAD A ROCK BAND HE PLAYED
WITH US OFTEN AT EVENTS WHEN THE
DIRECTORS WERE LEAVING OR OTHER
LEADERS WERE LEAVING, HE WOULD
DO THAT.
WE WERE ABLE TO SEE EACH OTHER A
COUPLE TIMES IN THE LAST FEW
YEARS.
ONCE WAS AT THE WASHINGTON
CATHEDRAL DOING AN EVENT FOR
VACCINE UPTAKE WITH THE AFRICAN
AMERICAN AND LATINO COMMUNITIES
AND AT THE KENNEDY CENTER HERE
WITH GARY GIBBONS WHEN WE WERE
AWARDED OUR SAMMY AWARD FOR
2021.
SO WE WILL MISS HIM BUT THE NIH
GOES ON AND I THINK ALL OF US
WHO HAD THE HONOR TO WORK WITH
HIM WILL REMEMBER THAT.
WE NOW HAVE LARRY WHO I THINK
HAS BEEN AN ABSOLUTE ROCK NEXT
TO DR. COLLINS FOR THE LAST
DECADE LAST 12 YEARS.
HE WAS THE PRINCIPLE DEPUTY
DIRECTOR AND IS NOW THE ACTING
DIRECTOR OF NIH AND I WILL
EXPECT HE'LL THERE BE FOR SOME
TIME.
DR. TABAK WAS THE DIRECTOR OF
THE DENTAL INSTITUTE BEFORE
BECOMING THE PRINCIPLE DEPUTY
AND BEING A FAMILIAR COLLEAGUE
REALLY WAS REASSURING FOR ALL
THE I.C. DIRECTORS AND WE'LL
WAIT TO SEE WHAT THE POLITICAL
PROCESS WILL BE TO A NEW
NOMINATION FOR A NEW NIH.
AS LARRY MOVED UP.
TARA SCHWETZ BECAME THE ACT
PRINCIPLE DEPUTY.
I'VE THAT'D OPPORTUNITY TO WORK
WITH TARA CLOSELY IN THE RADXUP
PROGRAM RAPID ACCELERATION OF
DIAGNOSTICS AND SHE MOVED TO THE
DEPARTMENT AND NOW CAME BACK.
AND BEING A CHIEF OF STAFF FOR
NIMHD FOR THE FIRST FIVE YEARS
OF MY TIME AS DIRECTOR MOVED TO
THE OFFICE OF THE DIRECTOR TO
WORK WITH TARA NOW THE ACTING
ASSOCIATE DIRECTOR.
WE'RE IN GOOD HANDS WITH
LEADERSHIP AT NIH CENTRAL.
BILL RILEY RETIRED AT THE END OF
CALENDAR 2021 AND CHRISTINE
HUNTER NOW THE ACTING DIRECTOR.
SHE MOVED UP FROM BEING DEPUTY
DIRECTOR AND WE'RE DELIGHTED TO
HAVE CHRISTINE HERE TODAY AT OUR
COUNCIL AS THE DIRECTOR OF OBSSR
A MEMBER OF OUR COUNCIL AS AN AD
HOC MEMBER.
AND WE WORK CLOSELY WITH OBSSR
ON MANY FRONTS INCLUDING COVID
AND LOOK FORWARD TO WORKING WITH
THE OFFICE IN THE COMING YEARS.
AND CAROLE JOHNSON DOES A LOT OF
IN THE COMMUNITY CLINIC NETWORKS
AT QHCs, WHICH ARE A CRITICAL
LEVERAGE POINT FOR US AT NIMHD
AND NIH LOOK CARE FOR THE UNDER
SERVE AND REDUCE DESPAIRS OR
AVOID WORSENING DISPARITIES.
WAS RECENTLY WORKING FOR THE
WHITE HOUSE COVID RESPONSE TEAM
AND PREVIOUSLY COMMISSIONER IN
NEW JERSEY.
JUST TO ALERT OF COMING
DEVELOPMENTS, ONE OF THE THEMES
OF THE BIDEN ADMINISTRATION HAS
BEEN TO EMPHASIZE HEALTH EQUITY
AND I THINK NIMHD IS VERY MUCH
IN THE CENTER OF THAT.
ANOTHER HAS BEEN THE EMPHASIS ON
CLIMATE CHANGE.
A CLIMATE CHANGE ON HEALTH
INITIATIVE HAS BEEN STARTED AT
NIH UNDER THE LEADERSHIP OF OF
NIEHS WITH A GROUP OF INSTITUTE
DIRECTORS FORMED A GROUP TO
GUIDE THIS AND THERE'S A REPORT
ON THE WEBSITE SUMMARIZING THE
PLANS WITH A REQUEST FOR
INFORMATION WITH A COUPLE
HUNDRED RESPONSES.
IT'S AN ONGOING PORTFOLIO AND
LANDSCAPE ANALYSIS AND WHAT WE
DO WITH THIS WILL DEPEND ON THE
APPROPRIATIONS COMING THROUGH
THOUGH THERE'S BEEN ACTIVITY IN
A NUMBER OF SPHERES FROM NIH AND
NIMHD HAS HAD GRANTS MOST
RECENTLY AROUND POST-HURRICANE
MARIA IN PUERTO RICO AND POST
DISASTERS.
AND THIS CAN BE A DAUNTING
PROBLEM HOW DO WE REDUCE HEALTH
THREATS AND BUILD RESILIENCE IN
INDIVIDUALS, COMMUNITIES AND
GLOBALLY AND IDENTIFYING RISK
AND OPTIMIZING BENEFITS.
CLIMATE CHANGE WILL
DISPROPORTIONATELY AFFECT THE
MOST UNDER SERVED AND VULNERABLE
POPULATIONS THOUGH IT AFFECTS
EVERYONE.
IT'S A THEME THAT EVERY HUMAN
NEEDS TO BE CONCERNED WITH.
WE NEED TO DEVELOP MORE RESEARCH
INFRASTRUCTURE AND WORKFORCE
CAPABLE OF MANAGING THIS AND
LEVERAGING SCIENTIFIC
DISCIPLINES AND OTHER
GOVERNMENTAL SECTORS AND
INNOVATE HOW WE TRANSLATE THE
RESEARCH INTO THE FINDINGS THAT
ARE CREDIBLE, ACCESSIBLE AND
ACTIONABLE.
WE HAVE A LOT OF IN COMMON IN
ADDRESSING STRUCTURAL HEALTH
DISPARITIES WITH THIS
INITIATIVE.
ANOTHER UPDATE FOR US IN THE
PAST YEAR WHICH I THINK HAS BEEN
REALLY IMPORTANT IS
COLLABORATION WITH THE OFFICE OF
THE DATA SCIENCE STRATEGY LED BY
SUSAN GREGURICK.
WE HAVE BEEN BENEFICIARY OF $1.6
MILLION IN SUPPLEMENTAL FUNDING
THAT ODSS THE OFFICE HAS
PROVIDED NIMHD GRANTEES THROUGH
INFRASTRUCTURE AND COMMUNITY
ENGAGEMENT AND WORKFORCE
DEVELOPMENT.
WE EXPECT AND PROJECT THIS TO
CONTINUE AND EXPAND OVER THE
COURSE OF THE NEXT SEVERAL YEARS
CERTAINLY IF OUR, PROPOSED
BUDGET BECOMES A REALITY IT IS A
CRITICAL AREA WE NEED TO
INCORPORATE IN EVERYTHING WE DO
AND BUILD CAPACITY NOT ONLY FOR
UNDER REPRESENTED POPULATIONS
BUT ALSO IN UNDER RESOURCED
INSTITUTIONS AND OUR HEALTH
DISPARITY RESEARCH SFT INSTITUTE
CONTINUES.
WE HAVE SET THE DATES AS YOU CAN
SEE IN THE LOVELY TIME IN
BETHESDA IN MID AUGUST.
OUR APPLICATION PERIOD
OFFICIALLY WILL OPEN ON MONDAY.OFFICIALLY WILL
OPEN ON MONDAY.
THOUGH PEOPLE WANT TO KNOW IF IT
WILL BE VIRTUAL OR IN PERSON WE
HAVE TO WAIT BEFORE WE CAN
COMMIT TO AN IN PERSON MEETING
OF COURSE AS NIMHD NEED TO BE
SURE THEY HAVE SUPPORTIVE OF
HOSTING ONE OF THIS SIZE.
IF NOT WE'LL HAVE IT VIRTUAL.
WE'LL GIVE IT TIME.
I'M PROUD OF THE EFFORT THIS HAS
YIELDED.
WE'VE HAD OVER 330 SCHOLARS COME
THROUGH THE HDRI.
WE'LL BE EVALUATING IT BUT WE
EXPECT IT TO PRODUCE THE FUTURE
RO1 RECIPIENTS AT NIH AND NIMHD
AND 60% OF OUR PARTICIPANTS ARE
MEMBERS OF UNDER REPRESENTED
POPULATIONS BY RACE AND
ETHNICITY.
THE COMMON FUND PROGRAM THE
FACULTY INSTITUTIONAL SUGGESTION
STAINABLE TRANSFORMATION OR
FIRST THE BUDGET IS $241 MILLION
OVER NINE YEARS AND THERE'LL BE
A SECOND AND THIRD COHORT OF
INSTITUTION OR AWARDEES GIVEN.
THESE ARE THE ONES WHO WERE
SUCCESSFUL.
OUR PLAN ORIGINALLY WAS TO HAVE
FOUR BE FUNDED EACH YEAR AND
WHAT WE SAW THAT THE INSTITUTE
DIRECTORS WERE ABLE TO PROVIDE
ADDITIONAL FUNDING TO SUPPORT A
TOTAL OF SIX.
WE WANT TO HIGHLIGHT THAT TWO OF
THESE INSTITUTIONS ARE IN THE
LESS RESOURCED INSTITUTION,
FLORIDA STATE UNIVERSITY AND SAN
DIEGO STATE.
SAN DIEGO IN PARTICULAR HAS AN
RCMI GRANT.
DREXEL UNIVERSITY IS LED BY ONE
OF OUR RENOWN DISPARITY
INVESTIGATORS AS WELL AS OTHER
INSTITUTIONS.
THE TERMS ARE LED BY UNDER
REPRESENTED SCIENTISTS.
THE UNIVERSITY OF ALABAMA
BIRMINGHAM CAME IN WITH A
PARTNERSHIP WITH TUSKEGEE AND
ANOTHER MODEL WE'VE ENCOURAGED
HERE AND THE COORDINATION AND
EVALUATION CENTER WENT TO
MOREHOUSE SCHOOL OF MEDICINE AND
AN HBCU AND THE NCI IS MANAGING
THE AWARDEES AND WE LOOK FORWARD
TO THIS PROGRAM.
I AND THERE'S A FOCUS ON HEALTH
DISPARITIES THROUGH THE COMMON
FUND.
IN FISCAL YEAR '21 ON THE
PROMPTING OF FRANCIS COLLINS A
YEAR AGO, MONEY IN THE COMMON
FUND WAS ALLOCATED TO THIS
PARTICULAR RO1 PROGRAM OR UL 1
PROGRAM, SORRY CIRCUMSTANCE WERE
FUNDED TO HIGH RESOURCE
INSTITUTIONS.
AGAIN, THERE WERE TWO TRACKS TO
FIND AND FIVE GRANTS FUNDED TO
LESS RESOURCED INSTITUTION.
A SMALL AMOUNT WAS ALLOCATED FOR
FISCAL YEAR '22 FOR MINORITY
SERVING INSTITUTIONS AND THAT
REQUEST HAS BEEN PUBLISHED AND
GRANTS HAVE NOT BEEN SUBMITTED
YET.
THERE WERE INNOVATIVE PROPOSALS
AND MANY MORE SUBMITTED NOT ABLE
TO BE FUNDED.
AND SO I LOOK FORWARD TO SEE
WHAT THE SCIENCE AND HOW THE
ADVANCE OF SCIENCE PARTICULARLY
ADDRESSING STRUCTURAL ISSUES
FROM THIS INITIATIVE.
AS SOME OF YOU ARE AWARE THE
COUNCIL OF COUNCILS APPROVED OR
CLEARED A CONCEPT TO BE LAUNCHED
IN FISCAL YEAR 23 AND WE'RE
AIMING TO INVESTIGATE $400
MILLION OVER THE COURSE OF 10
YEARS IN THIS EFFORT AND IT WILL
CENTERED IN INITIALLY FUNDING
COMMUNITY ORGANIZATIONS AND THIS
IS ONE OF THE TRANSFORMATIVE
NATURES OF IT.
DETAILS TO BE WORKED OUT.
I'M INVOLVED IN THE LEADERSHIP
OF THAT INITIATIVE ALONG WITH
JANET SANK AND JOSH GORDON AND
NIMHD DIRECTORS AND JANINE
CLAYTON AND DAVE WILSON THE
DIRECTOR OF THE TRIBAL HEALTH
RESEARCH OFFICE.
SO MORE TO COME ON THAT OVER THE
NEXT COUPLE YEARS.
WE CONTINUE TO ENGAGE ON REQUEST
LEGISLATIVE STAFFERS OR
CONGRESSIONAL STAFF AS
REQUESTED.
YOU CAN SEE HERE IN ANNAPOLIS
PARTICIPATED IN A BRIEFING
RELATED TO CORONAVIRUS CRISIS
SELECT COMMITTEE ON DISPARITIES
AND EXCESS DEATHS AND I'LL SHOW
YOU THE DATA FROM THAT STUDY
LATER ON.
I JOINED THE DIRECTOR OF NINR
AND DR. COLLINS AND DIANA
BIANCHI ON THE IMPACT OF NURSING
RESEARCH ON A CAUCUS AND THIS
CONGRESSIONAL NURSING CAUCUS
APPARENTLY HASN'T MET VERY OFTEN
SO I THINK IT WAS A FLASH POINT
FOR THEM TO GATHER TOGETHER AND
MEET AND HEAR FROM PRIMARILY
FRANCIS AND SHANNON THOUGH DIANA
AND I WERE THERE TO SUPPORT AND
PROVIDE ADDITIONAL INPUT AND
MONICA WEBB HOOPER IN A BRIEFING
FOR BONNIE WATSON COLEMAN SAT ON
A MEETING IN DECEMBER AND MONICA
ALSO JOINED CHELLY FROM THE NIMH
ON MENTAL HEALTH AND RELATED
HEALTH DISPARITIES.
LOTS OF ACTIVITY AND DISCUSSIONS
ABOUT MENTAL HEALTH IMPACTS OF
COVID AND THE NEED TO ATTEND TO
THIS PARTICULARLY AMONG YOUTH.
WE THINK THERE MAY BE MORE
COMING IN THAT DIRECTION.
LET ME TURN TO BUDGET.
I THINK THIS IS USUALLY THE
COUNCIL MEETING I DISCUSSED WHAT
ARE PRIOR FISCAL YEAR BUDGET WAS
LIKE.
WHEN I JOINED NIMHD AS DIRECTOR
WAS A MONTH BEFORE FISCAL '16
STARTED AND YOU CAN SEE WHERE
OUR BUDGET WAS AT THE TIME AND
THROUGH FISCAL YEAR'20 SOMETIMES
THERE WAS AN INCREASE FOR THE
PROGRAM AND THERE EVERY YEAR
BENEFICIARIES OF THE INCREASE
AND MANY WOULD SAY NIMHD GOT A
7% OR 8% INCREASE AND KEEP IN
MIND ABOUT HALF OF THAT ALMOST
ALWAYS ARE SET-ASIDES AND SAYING
YOU'LL SPEND THIS MUCH ON THIS
PARTICULAR PROGRAM AND THE
GENERAL INCREASE THAT WOULD GO
TO THE INSTITUTES WOULD BE
SUBSTANTIALLY LESS.
REGARDLESS, THE BUDGET HAS GROWN
AND IN 2021 OUR GROWTH WAS
PRIMARILY AGAIN FROM A SET-ASIDE
FOR THE MULTIPLE CHRONIC DISEASE
RESEARCH CENTERS WHICH INCLUDED
$45 MILLION IN ADDITION TO THAT
WE RECEIVED THE GENERAL
INCREASE.
THE $45 MILLION WAS ADD IT HAD
TO OUR BASE.
IT WASN'T A ONE-TIME INITIATIVE
WE WOULD THEN LOSE.
THE PROPOSED BUDGET FOR FISCAL
'22 WE'RE ALL ANXIOUSLY AWAITING
TO WORK ITS WAY THROUGH CONGRESS
IS IS IN THE ORDER OF AROUND
$651 MILLION.
THE PRESIDENT'S PROPOSAL, THE
HOUSE LANGUAGE AND THE SENATE
LANGUAGE ALL CAME IN AROUND
THAT.
AND SO HOPEFULLY WE WILL STILL
BE OPEN IN TWO WEEKS WHEN THE
CURRENT CONTINUED RESOLUTION IS
OVER AND CONGRESS WILL BE BUSY
PUTTING -- FILLING IN THE
DETAILS OF WHAT THE FISCAL YEAR
'22 BUDGET IS.
AND YES, WE WILL HAVE SIX MONTHS
TO SPEND IT ALL.
THIS IS WHAT THE BREAKDOWN, THE
PIE CHART OF WHAT OUR BUDGET
LOOKED LIKE IN FISCAL YEAR 2021.
WE SPENT ABOUT 40% ON RESEARCH
GRANTS ABOUT 90% OF THIS IS
RO1s, A COUPLE UL1s.
20% IS THE RCMI AND ABOUT 17%
ARE THE NON-RCMI CENTERS.
THESE THE CENTERS OF EXCELLENCE
AND ENVIRONMENTAL HEALTH
DISPARITIES CENTERS AND THE
MULTIPLE CHRONIC DISEASE
CENTERS.
DON'T EXPECT THESE TWO
PROPORTION TO CHANGE
SUBSTANTIALLY IN 2022.
THEY'LL GO UP LIKE EVERYTHING
BUT LOOK IT TO SEE A BIGGER
GROWTH IN OUR RO1 PIE CHART.
THIS IS WHAT IT TAKES TO RUN THE
OPERATION UNDER CONTRACTS IT
INCLUDES SCIENCE AS WELL AS
OTHER ASPECTS OF THE INSTITUTE
SO FOR EXAMPLE THE JACKSON HEART
STUDY AND THE HISPANIC STUDY OF
LATINOS IS HERE AND SPIR AND WE
HAVE A LEGISLATIVE PROPORTION
AND THE K AWARDS AND OTHER TERMS
ARE INCLUDED IN OTHER TERMS IN
TRAININGS.
OUR RO1 SUCCESS RATE IS AT
12.9%.
THIS IS A SLIGHT IMPROVEMENT
OVER PRIOR YEARS AND I'D BE
OPTIMISTIC WE'LL CONTINUE TO SEE
THAT GO UP.
THE SUCCESSION RATE WAS 19.5%.
YOU SEE WE DO NOT FUND EVERY
SINGLE GRANT THAT COMES IN WITH
A HIGH SCORE.
WITH HAVE DISCUSSIONS ABOUT THE
WELL SCORE GRANTS AND HAVE
GRANTS THAT ARE SCORED IN THE
30s.
THE SELECT PAY APPROACH FOR
EMPHASIZE INSTITUTE PRIORITIES
USED BY HALF THE INSTITUTES.
OTHERS ARE GOING WITH STRICT PAY
LINE.
WE'LL CONTINUE TO FUNCTION THIS
WAY THOUGH IT MAKES IT EASIER
WHEN THERE'S MORE FUNDING.
THIS IS A REFLECTION OF THE
SPIR/STTR.
WE LOOK FORWARD TO RE-ENN EERGIZING
THE PROGRAM.
AND BACK HERE ARE K99s.
WE STARTED FUNDING K23 AND K08
AND SOME KO1s AND YOU SEE THE
GROWTH IN APPLICATIONS AND
FUNDING.
AND AGAIN I EXPECT OR HOPE WITH
HIGHER A LARGER BUDGET WE'LL BE
ABLE TO FUND MORE OF THESE.
AND I THINK THE KO 8s AND K23s.
WE CONTINUE TO HAVE A BIG
EMPHASIS AND PRIORITY WITH OUR
LOAN REPAYMENT PROGRAM.
I LIKE TO SAY IT'S LIKE AN
ASSISTANCE PROGRAM.
SOME PEOPLE TALK ABOUT UNIVERSAL
BASIC INCOME.
LOTS OF EVIDENCE -- SOME
EVIDENCE FROM MOSTLY AROUND THE
OUTSIDE THE UNITED STATES AND
MIDDLE INCOME COUNTRIES THIS
WORKS AND DID IMPROVE HEALTH AND
SO OUR GOAL HERE IS TO HAVE MORE
INDIVIDUALS GO INTO RESEARCH.
AGAIN, THE NIMHD AWARDEES ON
AVERAGE ARE ABOUT 60% COMING
FROM UNDER REPRESENTED GROUPS.
OUR SUCCESS RATE IS UP TO 60% IT
USED TO BE 15% TO 16% AND
HOPEFULLY THIS WILL CONTINUE.
THE REASON WE'RE BETTER NOW IS
BECAUSE WE HAVE FEWER APPLICANTS
BECAUSE THE CHANGE IN THE RULES
ALLOWED LOAN APPLICANTS
INTERESTED IN DISPARITIES TO
APPLY TO NIH AND CAN GO TO ANY
INSTITUTES WHO THEN MAKE THE
DECISION TO FUND THEM.
I MENTIONED THE MULTIPLE CHRONIC
DISEASE CENTERS AND WE LOOK
FORWARD TO SEEING THE PROGRAM
DEVELOP AND INCREASING K AWARDS
AND ONGOING STUDIES AND THE
JACKSON HEALTH STUDY AND THE
CENTER FOR AIDS RESEARCH AND THE
COHORT STUDIES AND OUR
COLLABORATIONS WITH THE OFFICE
OF AIDS RESEARCH CONTINUES
CLOSELY AND WE WILL CONTINUE TO
ADDRESS ISSUES AROUND ENDING THE
HIV EPIDEMIC INITIATIVE THROUGH
RO1s AND OTHER OPPORTUNITIES
THROUGH SUPPLEMENTARY AWARDS TO
INSTITUTIONS PARTICULARLY IN THE
RCMI COMMUNITY.
THE RESPONSE ACROSS NIMHD HAS
BEEN INCREDIBLE.
WE'RE ENTERING YEAR THREE SO
THERE'S A CERTAIN AMOUNT OF
FATIGUE I WOULD SAY THAT HAS
AFFECT ALL OF US BUT I THINK WE
KEEP FINDING NEW ENERGY.
AS DIRECTORS AND NEW LEADERSHIP
BUT ESPECIALLY STAFF NOT ONLY
PROGRAM STAFF AND GRANTS
MANAGEMENT AND REVIEW BUT ALSO
ALL OF OUR ADMINISTRATIVE AND
SCIENTIFIC SUPPORT STAFF HAS
JUST BEEN INCREDIBLE.
NIMHDs RESPONSE HAS BEEN UP
FRONT.
WE'VE BEEN INVOLVED IN MAJOR
INITIATIVES AND I DON'T SEE THAT
WANING AT ALL.
ONE OF THE EXAMPLES WAS ABOUT A
YEAR AGO AS THE VACCINE WAS
BEING ROLLED OUT AND CONCERNS
ABOUT WHAT CAN DO TO LEARN HOW
TO INCREASE INCREASE UPTAKE AND
WE FUNDED FIVE GRANTS AND THE
SUPPORT FOR THE O.D. WAS FOR
YEAR ONE BUT WE CONTINUED TO
FUND THEM FOR THEIR THREE OR
FOUR OR FIVE YEARS DEPENDING ON
THE DURATION OF THE GRANT.
TURNING TO STAFF TRANSITIONS,
PROUD AND HAPPY THAT RINA DAS AC
SEPPED MY OFFER TO BECOME THE
DIRECTOR OF THE -- ACCEPTED MY
OFFER TO BECOME THE DIRECTOR OF
INTEGRATIVE BIOLOGICAL AND
BEHAVIORAL SCIENCES AND OUR
RE-ORGANIZATION THREE-YEAR PATH
WAS COMPLETED LAST SUMMER AS I
ANNOUNCED IN SEPTEMBER AND
ALLOWS A FOUNDATION FOR NIMHD TO
GROW AND EXPAND ON THE
FOUNDATIONAL DIVISION WE HAVE.
SHE BRINGS A WIDE EXPERIENCE AT
NIH AND HAS BEEN AT A PROGRAM
DIRECTOR SINCE 2014 AND PRIOR
WAS AT NCI AT THE CENTER TO
REDUCE CANCER HEALTH
DISPARITIES.
I MET HER AT THAT TIME AND SHE
WAS TEMPORARILY PROGRAM OFFICER
FOR A PROJECT I WAS INVOLVED
WITH.
LOTS OF NEW STAFF.
IF WE WERE IN PERSON I'D ASK
THEM TO STAND UP SO THEY COULD
BE SEEN.
WE LIMITED THE PERSONS AT THE
TABLE SO THEY'RE NOT ON VIDEO
AND CRYSTAL BARKSDALE.
JARRETT JOHNSON COMPLETED HIS
FELLOW-AND JOINED NIMHD IN THE
DIVISION OF COMMUNITY HEALTH AND
POPULATION SCIENCE.
IN THE DIVISION OF CLVRJ AND
HEALTH SERVICES RESEARCH,
MICHELLE DOOSE AND CAROLINA AND
YEWANDE AND SUNDONIA CAME FROM
ANOTHER PROGRAM AND FROM THE
CLINICAL HEALTH AND ARIELLE AND
OLGA CAME FROM THE CANCER
PREVENTION FELLOWSHIP AND
CONTRIBUTING ON BASIC AND
IMPLEMENTATION BEHAVIORAL
SCIENCE IN THE DIVISION OF
INTEGRATIVE BIOLOGICAL AND
BEHAVIORAL SCIENCES.
IN THE OFFICE OF THE DIRECTOR,
GNESHA IS WORKING WITH MONICA
WEBB HOOPER AND MYSELF AS WE
RECON FIGURE WHAT WE'RE DOING IN
THE OFFICE OF THE DIRECTOR AND
EXPANDING OUR SCIENCE CAPACITY
TO MANAGE AND LEAD TERMS THAT
CUT ACROSS NIMHD AND NIH WIDE
INITIATIVES.
IN REVIEW, JINGSHENG JOINED THE
OFFICE OF SCIENCE AND ASSEN CAME
AS A HEALTH ECONOMIST AND IN THE
OFFICE OF COMMUNICATIONS AND
PUBLIC LIAISON UNDER KELLY
CARRINGTON, THOKO JUST JOINED
AND MELANIE SANTOS AFTER DOING
DETAIL WITH US FROM NCI WAS
RECRUITED OVER TO NIMHD AND
WE'RE VERY HAVE THEM.
OUR OFFICE OF ADMINISTRATIVE
MANAGEMENT ADDED JEANNE JONES AS
A MANAGEMENT ANALYST AND I KNOW
WE NEED MORE STAFF IN
ADMINISTRATION TO SUPPORT
KIMBERLY'S WORK AND WE'LL LOOK
TO EXPAND.
NIMHD EXPECT TO CONTINUE TO
HIRE.
WE'RE FAR FROM REACHING OUR
RECALIBRATED CEILING SO IF YOU
KNOW OF ANYONE WHO MAY WANT TO
WORK FOR NIH, INCLUDING NIMHD
DON'T HESITATE TO LET US KNOW.
WE SAID GOOD-BYE TO SOME
LONG-TERM STAFF AT NIMHD THIS
PAST YEAR, TOM VOLLBERG WAS
DIRECTOR OF OUR OFFICE
EXTRAMURAL RESEARCH ACTIVITIES
AND THOSE ON COUNCIL MAY HAVE
REMEMBERED THE EXECUTIVE
SECRETARY AND MONICA WEBB HOOPER
WILL SERVE AS ACTING IN THE
PHASE OF IDENTIFYING AND
SELECTING A NEW OERA DIRECTOR.
AND DENISE RUSSO OVER FROM
DETAIL FROM CHILD HEALTH TO RUN
COUNCIL THIS MONTH.
TOM WAS A SPECIAL PERSON HE CAME
FROM NCI AND STARTED AT NIMHD A
COUPLE MONTHS BEFORE ME AND WHEN
HE ARRIVED WAS TO RUN REVIEW.
HE HAD A GENTLE MANNER ABOUT
HIM.
HE WAS VERY THOUGHTFUL.
HE HAD A BASIC SCIENCE
BACKGROUND HE'S A QUICK STUDY
WITH THE ISSUES WE WERE
INTERESTED IN.
HE WAS A REALLY GOOD LEADER AND
I ALWAYS ALWAYS APPRECIATED HIS
ADVICE, SLOLICIT ORDER NOT AND
THE CHARACTERISTICS I LOOK FOR
IN THE LEADERS AT NIMHD AND
WE'LL MISS HIM.
NATASHA WILLIAMS WAS PROMOTED
AT CHILD HEALTH AND HAS BEEN OUR
LEGISLATIVE LIAISON AND MOVED TO
A LARGER GROUP OFFICE AT CHILD
HEALTH.
NATASHA HAD BEEN AT NIMHD FOR
NOT QUITE 10 YEARS AND ALWAYS
INTERACTED IN THE FIRST YEAR
PREPARING ME AND ACCOMPANYING ME
GREET VISITS.
WE WILL MISS HER PRESENCE IN THE
INSTITUTE.
MAJOR TYAS WAS IMPORTANT IN
OTHER ACTIVITIES AND NOW MOVED
TO THE COMMON FUND AND WILL
CONTINUE TO SUPPORT THE FIRST
COORDINATION AND EVALUATION
CENTER AND ALSO WORK WITH US ON
THE INFORMATIVE COMMON FUND
INITIATIVE I CO-CHAIR.
SHE'S A STAFF THAT WILL BE
WORKING OR THE COMMON FUND.
AND WE LOST OUR SENIOR
INFORMATION TECHNOLOGY OFFICER.
WE NEED TO RECRUIT.
MATT WISE DID THIS ABOUT FIVE
YEARS AND CAME IN NOT LONG AFTER
KIMBERLY BECAME OUR EXECUTIVE
OFFICER.
I WON'T BORE YOU WITH THE
DIFFERENT THINGS I'VE BEEN DOING
ON ZOOM.
OFTEN I SAY I CAN'T DO MORE THAN
ONCE A WEEK.
SOME OF THE ONES THAT ARE PUBLIC
OUTREACH ARE REALLY FUN.
THE BLOOMBERG ONE WAS A LIVE ONE
WITH BLOOMBERG NEWS WITH GARY
GIBBONS AND I IN RELATION TO THE
SAMIES AND WE TALKED ABOUT
INCLUSIVE PARTICIPATION.
THE WASHINGTON POST LIVE WAS
ALSO GREAT.
I WAS ON THE BACK OF THE
WASHINGTON POST NEWSPAPER AND
EVEN DR. FAUCI NOTICED IT AND
THAT WAS QUITE A COMPLIMENT AND
PART OF OTHER BLOGS.
SECRETARY BECERRA VISIT THE
CAMPUS AND I WAS ONE OF THE S
INVITED TO MEET WITH HIM AND WE
TALKED ABOUT OUR TERMS AND
THAT'D -- HAD THE OPPORTUNITY
FOR THE PHOTOGRAPH.
I'M PROUD OF MAY BUILT TO REACH
OUT TO MY COMMUNITY IN SPANISH.
AS A GENERAL INTERNIST I'M
ALWAYS WILLING TO TALK ABOUT
ALMOST ANYTHING RELATED TO
HEALTH AND THE THINGS I DIDN'T
KNOW ANYTHING ABOUT I'VE LEARNED
ABOUT AND CERTAINLY COVID-19 HAS
NOT HELD ME BACK.
LEVERAGING OPPORTUNITIES ON
REQUEST VIA THE WHITE HOUSE OR
SPEAKING ON TELEMUNDO IN A
VARIETY OF SETTINGS HAS VARIED
OVER TIME AND THERE'S BEEN MORE
ENGAGING CORRESPONDENCE AND IN
GENERAL I TRY TO ACCOMMODATE
THIS WHENEVER POSSIBLE AND
ACTIVE ON RADIO TERMS LINKED AND
NOT LINKED TO CEAL.
WE FUNDED 11 INSTITUTIONS.
THESE ARE INTENDED TO BE
REGIONAL NOT ONE INSTITUTION.
THEY'RE PRIMARILY ONE BUT
EXPECTED TO HAVE SOME REGIONAL
IMPACT.
THAT WAS THE INTENT OF THE
PROGRAM.
IT'S ALSO INTENDED TO ASSOCIATE
MORE THAN ONE INSTITUTION AND
WE'LL FOCUS ON THAT AND THE
CHRONIC DISEASES ARE LISTED
HERE.
WE WANTED CARDIO VASCULAR
DISEASE AND CHRONIC LIVER
DISEASE AND CANCER AND NONE
FOLLOWED UP ON OSTEOARTHRITIS.
I'LL COME BACK TO THIS AT SOME
POINT BECAUSE THIS IS CLEARLY A
VERY IMPORTANT AND COSTLY
DISEASE THAT AFFECTS ALL OLDER
ADULTS ESPECIALLY AND
DISPROPORTIONATELY AFFECTS
WORKING PEOPLE FREQUENTLY
RELATED TO KNEES AND HIPS AND
HANDS AND AFFECTS QUALITY OF
LIFE.
IT IS INTENDED THE WHOLE
SPECTRUM OF DISEASE AND RISK
FACTORS, REPRESENTATION OF RISK
FACTORS AND MANAGING THE
DISEASES THEMSELVES AND PRE
PRESENTING PROGRESSION AND
DIABETES AND PRE-DIABETES AND
NOT JUST FOCUS ON CLINICAL
OUTCOMES AND INCLUDING IN THIS
ACCESS AND QUALITY OF HEALTH
CARE FOR THE CONDITIONS.
LET ME SPEND A FEW MINUTES ON
THE PORTFOLIO PROPOSED BY STAFF.
ONE OF THE CHALLENGES FOR MAY
COUNCIL IS CAN WE BRING MORE
INTERVENTIONS TO THIS FORUM
WHICH I THINK YOU WILL SEE AS
NOT AS PRESENT HERE.
THERE ARE LINKS BETWEEN BEING
MALTREATED DURING CHILDHOOD AND
LOW GRADE INFLAMMATION ADULTS AN
FITTING INTO THE MODEL OF WHAT
MAY HAPPEN AS A CHILD MAY HAVE
CONSEQUENCES 30, 40 YEARS LATER.
CHILDREN FROM LOW INCOME
COUNTRIES, HALF HAD BEEN EXPOSED
TO LOW TREATMENT AND THE
INFLAMMATION COMPOSITE OF SIGHT
CYTOKINE PROTEIN AND GIRLS WHO
HAD BEEN MALTREATED HAD HIGHER
LEVELS OF INFLAMMATION THAN
GIRLS NOT MALTREAT AND BOYS WHO
WERE MALTREATED AND PARTICULARLY
GIRLS EXPOSED TO TWO OR MORE
FORMS OF MALTREATMENT.
THIS LOOKS AT BIOLOGICAL
MEDIATORS AND EXPLAIN WHAT WE
OBSERVE CLINICALLY.
THE SCIENCE COMMUNITY HAS BECOME
MORE AWARE OF HOW IMPORTANT
ABUSE AND MALTREATMENT AND
HARASSMENT IS IN OUR LIFE
COURSE.
IT GETS MAGNIFIED IN CHILDHOOD
AT ALL LEVELS AS ONE'S BRAIN IS
NOT FULLY DEVELOPED IN ADAPTING
TO HOW IT'S GOING FUNCTION WE'RE
GOING FUNCTION AS ADULTS.
I THINK THIS KIND OF RESEARCH I
THINK IS IMPORTANT TO HELP POINT
TO PATHWAYS THAT WILL HOPEFULLY
LEAD US TO INTERVENTIONS.
THIS IS A STUDY THAT LOOKS AT
PARTICIPANTS AND VACCINE
HESITANCY TO COVID-19.
YOU CAN SEE THE DISTRIBUTION OF
THE SAMPLE FROM NORTH CAROLINA
AND 60% AFRICAN AMERICAN AND 14%
LATINO.
TESTING DES ERTS IN NORTH
CAROLINA -- DESERTS IN NORTH
CAROLINA BEFORE THE VACCINE WAS
AVAILABLE AND YOU CAN SEE THE
DECLINE IN HESITANCY THAT
OCCURRED IN THE SETTING
PRIMARILY AMONG WHITE AND
LATINOS OVER AFRICAN AMERICANS.
FACTOR WERE ASSOCIATED WITH
BEING MORE HESITANT INCLUDING
WOMEN BEING AFRICAN AMERICAN THE
DIFFERENT CALENDAR MONTHS AND
OTHER ISSUES.
THERE'S THIS PERVASIVE
GOVERNMENT DISTRUST THOUGH WE
CONSIDER OURSELVES SCIENTISTS
AND WE'RE NIH AND WE FUND
RESEARCH, WE'RE PART OF
GOVERNMENT, AND DIFFERENTIATION
BETWEEN WHAT NIH DOES AND WHAT
OTHER PARTS OF GOVERNMENT MAY
HAVE DONE IN THE PAST GETS
BLURRED IN THE GENERAL PUBLIC.
I THINK THIS IS AN ONGOING ISSUE
THAT ALL OF US AS SCIENTISTS AND
SUPPORTERS OF RESEARCH NEED TO
CONSIDER IN BEING MORE PROACTIVE
TO DEAL WITH.
THIS IS FROM THE ENVIRONMENTAL
DISPARITIES RESEARCH CENTERS AT
USC AND LOOKING AT THE
RELATIONSHIP BETWEEN DAILY
PRE-NATAL EXPOSURE TO POLLUTANTS
ACROSS PREGNANCY AND MEASURE
POLLUTANTS AND MEASURE OZONE AND
PARTICULATE MATTER AND HOW THIS
MAY BE RELATED TO DEPRESSION.
NOW, AGAIN, THIS IS PART OF
THEIR GRANT APPLICATION AS WE
BEGIN TO SEE RESULTS IS
REASSURE.
THE IDEA THAT PARTICULATE MATTER
WHICH IS BAD FOR YOUR LUNGS AND
HEART AND PROBABLY AND THIS CAN
CONTRIBUTE TO CANCER AND MAY
LEAD TO MENTAL HEALTH ISSUES AND
DEPRESSION.
THE COHORT IS PRIMARILY LATINA
WOMEN AND MEXICAN AMERICAN WOMEN
AND DEPRESSION WAS INCREASED
WITH SECOND TRIMESTER EXPOSURE
WITH ODDS RATIOS YOU CAN SEE
OVER 2.
AND OTHER EXPOSURES ASSOCIATED
WITH INCREASED DEPRESSION.
PARTICULATE IS ANYTHING THAT
GETS BURNED.
ALL THE FIRE PLACES, BURNING
ANYTHING OUTSIDE AND CONSUMING
ANY PARTICULATE MATTER AND WHAT
IS AMBIENT AIR POLLUTION.
AND LOOKING AT GLYCEMIC CONTROL
AMONG ADULTS WITH DIABETES AND
LOOKING AT A SURVEY OVER THE
COURSE OF FIVE YEARS FOR
MULTIPLE CROSS-SECTIONAL SAMPLES
TO GET A SAMPLE OF 1,682 ADULTS
OVER THE AGE OF 20.
SO POOR GLYCEMIC CONTROL
REMEMBER CROSS-SECTIONAL SAMPLES
TO GET THE PERSONS WITH DIABETES
AND IT'S MUCH LARGER -- SOMEBODY
NEEDS TO BE MUTED.
ASSOCIATED WITH POOR QUALITY OF
DIET AND FOOD INSECURITY BEING
BLACK, LATINO AND LACKING A
REGULAR SOURCE OF HEALTH CARE.
HAVING FOOD INSECURITY IS A
CONTRIBUTOR TO VARIATION IN
DIABETES CONTROL IN WORKING
PEOPLE.
AT LEAST 10% OF THE
U.S. POPULATION HAS SOME LEVEL
OF FOOD -- LACKING FOOD
SECURITY.
SOME ESTIMATES MAY BE AS HIGH AS
20% IN THE MOST POPULATIONS
AFRICAN AMERICANS AND LATINOS
DEPENDING ON THE AGE AND
PARADOXICALLY HAVING FOOD
INSECURITY LEADS TO GREATER
CONSUMPTION OF CALORIC DENSE
FOODS WHEN RESOURCES ARE
AVAILABLE.
THERE'S A STRONG ASSOCIATION
WITH EXCESS WEIGHT OR OBESITY
WITH HAVING FOOD INSECURITY AND
SEE IN THE DATA ISSUES AROUND
CONTROL OF DIABETES IS ALSO
RELATED.
THIS IS ONE OF THE PRODUCTS FROM
THE HEALTH INFORMATION
TECHNOLOGY AND HEALTH
DISPARITIES INITIATIVE THAT WE
FUNDED.
IT IS A STUDY FROM THE GROUP IN
OREGON AND TRY AND DEVELOP AND
TEST ELECTRONIC HEALTH RECORD
BASE CLINICAL DECISION SUPPORT
TOOL FOR CONTEXTUALIZED SOCIAL
RISK.
WE NEED LOTS OF GROUPS TO WORK
IN THIS SPACE.
IT'S THE NOTION THAT WE HAVE
DONE IN THE PAST VERY LITTLE
ASSESSMENT OF INDIVIDUALS SOCIAL
DETERMINATES OF HEALTH IN
PROVIDING HEALTH CARE AND I
THINK MAKING THIS MORE
SYSTEMATIC AND THROUGH THE
ELECTRONIC HEALTH RECORD IS AN
OPTION.
YOU ASSESS BUT YOU DON'T KNOW
WHAT TO DO ABOUT IT AND WHAT
GOOD DOES IT DO.
IT MAY IMPROVE COMMUNICATION AS
ONE IDEA BETWEEN CLINICIAN AND
PATIENT MAY MAKE US GET AWAY
FROM THE BLAMING THE PATIENCE
FOR NOT DOING WHAT WE
RECOMMENDED.
I THINK THIS KIND OF TOOL MAY
HAVE POTENTIAL TO LEAD US TO
ACTUALLY LEAD TO ACTIONS.
AGAIN, LOTS OF BARRIERS RELATED
TO REIMBURSEMENT IN OUR FEE FOR
SERVICE MODEL.
IT IS A CHALLENGE.
SO THEY WILL DO THIS -- THEY'LL
IMPLEMENT THIS TOOL AND
INTERVENTION CLINICS AND FOLLOW
THEM FOR 18 MONTHS TO SEE HOW
OUR IMPACTS ARE APPROPRIATELY
IMPROVING QUALITY MEASURES SUCH
AS BLOOD PRESSURE CONTROL AND
HEMOGLOBIN A1C.
GIVEN WE KNOW THOUGH NOT
NECESSARILY IN OREGON SO IT'S
NOT AN ONLY OREGON STUDY, THAT
AFRICAN AMERICAN AND LATINOS
WITH HYPER TENSION AND DIABETES
ACTUALLY HAVE WORSE CONTROL OF
THEIR BLOOD PRESSURE AND
HEMOGLOBIN A1C IN THE MEDICARE
ANALYSIS.
SO AFTER EVERYONE HAS ACCESS TO
SOME FORM OF HEALTH CARE
COVERAGE AND SO I THINK THIS IS
A PROBLEM GIVEN WE KNOW THE
PREVALENCES ARE HIGHER
PARTICULARLY FOR AFRICAN
AMERICANS AND LATINOS ARE KNOWN
TO HAVE LESS CONTROLLED BLOOD
PRESSURE AND WE'LL LOOK FOR
ADDITIONAL RESULTS FROM THIS
GROUP.
THIS IS RELATIONSHIP OF THE
IMPACT OF THE ACA MEDICAID
EXPANSION ON TRAUMA CARE IN
STATEWIDE HOSPITAL DISCHARGE
DATA FROM FIVE STATES THAT DID
EXPAND MEDICAID AND FIVE STATES
THAT DID NOT.
THERE MAY BE BIAS SINCE THE
STATES THAT DID NOT EXPAND ARE
DIMINISHING IN NUMBER AND
PARTICULARLY MAY BE DIFFERENT
THOUGH ONE COULD ARGUE WHO MAJOR
STATES HAVE NOT AND WILL NOT IN
THE IMMEDIATE FUTURE EXPAND,
TEXAS AND FLORIDA.
THOSE COMPARISONS ARE WORTHWHILE
WORTHWHILE.
SO EXPANSION OF MEDICAID WAS
MARKED DECREASE IN UNINSURED
PATIENCE AND DISPROPORTIONATE TO
AFRICAN AMERICANS AND LATINOS
AND ACROSS THE BOARD THE ACA
REDUCED THE UNINSURED RATE FOR
LATINOS BY AT LEAST A THIRD.
LATINOS IN GENERAL HAVE THE
HIGHEST RATE OF IN -- UNINSURED
POPULATIONS IN THE UNITED STATES
AND THAT HAS NOT CHANGED AND
PATIENT REHABILITATION WAS
OBSERVED ESPECIALLY AMONG
PATIENTS FROM THE LOST COMPARED
TO THE HIGHEST INCOME ZIP CODES
AND DECREASE IN HOSPITAL
MORTALITY AMONG BLACK PATIENTS.
MORE AND MORE EVIDENCE IS
EMERGING, HAS EMERGED OVER TIME
SINCE THE EFFECTIVENESS OF THE
AFFORDABLE CARE ACT IN I AM
PROVING HEALTH.
-- IN I AM -- IMPROVING HEALTH
AND AS IT WAS DEPLOYED THERE
WERE MULTIPLE ATTEMPTS TO END IT
AND IT WAS WEAKENED IN SOME WAYS
BUT I THINK IT WAS A MAJOR
PROGRESS AND NOW AT LEAST WE
HAVE AN OPPORTUNITY TO
STRENGTHEN IT AND IT HAS BEEN
EMBRACED BY MANY STATES THAT DO
NOT HAVE DEMOCRATIC LEADERSHIP.
I'M OPTIMISTIC THE IMPACT IS
HERE TO STAY.
THIS IS AN ANALYSIS.
I HAD THE OPPORTUNITY TO
COLLABORATE WITH AND LOOKING AT
DATA FROM THE CDC AND ESTIMATES
FROM THE CENSUS TO COMPARE
EXCESS DEATHS FROM RACE,
ETHNICITY, SEX, AGE GROUP NOT
REALLY A LOT OF DETAIL ON CAUSE
OF DEATH SO HARD TO REALLY
QUANTIFY HOW MANY OF THESE
EXCESS DEATHS NOT DUE TO COVID
ARE RELATED TO EXCESS
CARDIOVASCULAR OR CANCER DEATHS
WOULD BE THE EXPECTED HIGHEST
NUMBERS.
ALMOST 3 MILLION PEOPLE DIED IN
THE UNITED STATES BETWEEN MARCH
1, 2020 AND DECEMBER 31.
ESTIMATE 477,200 OF THESE EXCESS
DEATHS WITH A COMPARISON TO
2019, HARD TO COMPARE PRIOR TO
2019 BECAUSE SOME OF THE
CATEGORIES CHANGED AND THAT WAS
ONE OF THE COMMENTS THE
REVIEWERS AND THE EXCESS DEATHS
PER 100,000 PERSONS ARE SHOWN ON
THE BAR GRAPHS TO THE RIGHT AND
YOU CAN SEE WHEN COVID-19 AND
NON-COVID-19 AND THESE ARE RATES
SO THE ABSOLUTE NUMBER IS
HIGHEST AMONG WHITES BUT THE
RATES AS WE KNOW ALREADY MORE
THAN DOUBLE OR MORE FOR AND FOR
THE GLOBAL GROUP OF ASIAN WE
LOSE GRANULARITY FOR THE NATIVE
HAWAIIAN ISLANDERS ARE NOW BEING
SEPARATELY ASCERTAINED FOR THE
CAUSE OF DEATH.
SOMETHING THAT'S BEEN ALMOST A
20-YEAR PROJECT BY THE CDC AND
NATIONAL CENTER FOR HEALTH
STATISTICS.
WE'LL SEE BETTER DATA MOVING
FORWARD AND NATIVE AMERICAN
INDIANS AND MEN SUFFERED MORE
COVID DEATHS AS WELL AS EXCESS
DEATHS COMPARED TO WOMEN.
THIS IS A STUDY THAT CAME FROM
MY LAB AT NHLBI AS WE TRY TO
LEVERAGE THE ACCESS TO THE
HISPANIC COMMUNITY HEALTH STUDY
DATA TO LOOK AT THE
CROSS-SECTIONAL AND LONGITUDINAL
PERSPECTIVES WITH SOL, WHAT WE
ARE USING 12 BIOMARKERS FOR A
MEASURE OF CHRONIC STRESS,
PHYSIOLOGICAL MEASURES OF
CHRONIC STRESS.
SYMPTOMS OF DEPRESSION AS
MEASURED AND UNHEALTHY
BEHAVIORS.
THIS WAS IN PART PROMPTED BY
WORK THAT JAMES JACKSON HAS
PUBLISHED YEARS AGO, JAMES
PASSED AWAY A LITTLE OVER A YEAR
AGO KNOWN TO MANY OF US AS A
GIANT IN THE FILED.
AND THE UNHEALTHY BEHAVIORS IS
SMOKING AND AT RISK ALCOHOL
CONSUMPTION OR EXCESSIVE OR
BINGE.
AND DIET AND PHYSICAL INACTIVITY
WHICH SEEMED TO HAVE GOTTEN LEFT
OFF I PROBABLY DELETED IT
WITHOUT KNOWING.
SO HIGH ALLOSTATIC LOAD AND
UNHEALTHY BEHAVIOR COUNTED FOR
ONE COMPARED TO THOSE WITH NO
UNHEALTHY BEHAVIORS HAD LOWER
ODDS OF DEPRESSION.
AND SOME POPULATIONS AND AFRICAN
AMERICANS COPED AND BUILT
RESILIENCE TO STRESS OF
UNEMPLOYMENT OR BEING POOR OR
OTHER ISSUES IN THEIR COMMUNITY
BY VIEWING UNHEALTHY BEHAVIORS.
INCLUDING UNHEALTHY EATING, USE
OF SUBSTANCES OR SMOKING.
THIS IS VERY CONTROVERSIAL WHEN
IT WAS PUBLISHED AND GOT A LOT
OF PUSHBACK ON IT AND WE HAD
HAVE DONE A NUMBER OF ANALYSES
TO SEE IF THERE WAS EVIDENCE IN
OTHER POPULATIONS AS WELL AS IN
AFRICAN AMERICANS.
THIS IS ONLY LATINOS OF COURSE.
WE LOOKED TRIED TO LOOK AT SUB
POPULATION BUSINESS ORIGIN BUT
THE SAMPLE SIZES GET SMALL AND
THERE ARE HINTS IN THE DATA
PUERTO RICANS PERHAPS FIT MORE
OF THIS MODEL BUT I WOULDN'T
MAKE A BIG DEAL OF THAT.
THIS IS WITH A SAMPLE SIZE OF
11,000 SO NOT A SMALL STUDY.
COVID RELATED DISINFORMATION.
NIMHD INTRAMURAL PROGRAM
LAUNCHED MULTIPLE ONLINE SURVEYS
FUNDED IN 2020.
THEY WERE CONDUCTED BETWEEN
DECEMBER 2020 AND FEBRUARY 2021
SO BEFORE WE HAD IMPLEMENTED OR
DEPLOYED THE EFFECTIVE VACCINES
IN THE COMMUNITY, THIS
PARTICULAR ANALYSIS LED BY PAUL
STRASSLE TO BE PUBLISHED AND
THE STUDY SAMPLED WAS A PURPOSE
SAMPLE OF ASIAN AFRICAN
AMERICANS AN LATINOS HALF WERE
SPANISH SPEAKING AND WHITE
ADULTS.
AND AN ADDITIONAL SAMPLE OF
AMERICAN INDIAN AND ALASKAN
NATIVES AND NATIVE HAWAIIANS
PACIFIC ISLANDERS AND
MULTI-RACIAL ADULTS.
AND THERE WERE OTHER SAMPLES OF
SMOKING DONE BY INTRAMURAL
INVESTIGATORS.
IN THEIR RESULTS IN THIS PAPER,
ALL ADULTS BELONGING TO ONE OF
THE ETHNIC POPULATIONS WERE MORE
LIKELY TO EXPERIENCE
DISCRIMINATION COMPARED TO WHITE
ADULTS.
AND ASIAN AND AMERICAN INDIA AND
ALASKAN NATIVE WERE THE MOST
LIKELY.
LIMITED ENGLISH PROFICIENCY,
LESS EDUCATION, LOWER INCOME AND
LIVING IN THE BIG CITY OR
SOUTHEAST CENTRAL OF THE COUNTRY
WAS ALSO ASSOCIATED WITH
INCREASED DISCRIMINATION.
SO MORE TO COME.
WE ARE FONDLY CALLING IT THE
SUSH STUDY.
THE DIRECTOR OF NINR HAS OUR LAB
IN OUR INTRAMURAL PROGRAM.
THIS IS TO EVALUATE TRENDS AND
DISPARITIES RELATED TO
PHARMACIES BY NEIGHBORHOOD
COMPOSITION.
THIS IS FROM THE NATIONAL
COUNCIL FOR DRUG TERMS AND I
LIVE IN DC AND IT'S A DENSE
URBAN NEIGHBORHOOD AND HAVE
PHARMACIES WITHIN FIVE BLOCKS OF
WHERE I LIVE.
THIS IS A VERY HETRO GENOUS
NEIGHBORHOOD AND THERE'S
PHARMACY DESERTS AND MORE POLICY
AND RESEARCHERS ARE DISCUSSING
HOW WE CAN USE THE PHARMACY
CHAINS AS A FLASH POINT FOR
INTERVENTIONS.
WE'RE DISTRIBUTING TESTS AND I
GOT MY DOSES OF VACCINES AT
PHARMACIES.
I THINK THIS IS ALL AN IMPORTANT
POTENTIAL FOR THE FUTURE AND YOU
CAN'T DO ANYTHING IF THERE'S NO
PHARMACY IN YOUR NEIGHBORHOOD.
IT'S LIKE EAT HEALTHY BUT
THERE'S NO SUPER MARKET AND HAVE
TO GO SEVERAL MILES AND DON'T
HAVE A VEHICLE AND PUBLIC
TRANSPORTATION IN YOUR CITY IS
NOT THAT GOOD.
LET ME WIND DOWN WITH THINGS
THAT HAVE HAPPENED.
THE HEALTH DISPARITIES INTEREST
GROUP AT NIH.
THIS IS AN INTRAMURAL INTEREST
GROUP PRIMARILY REACTIVATED.
THE FORMER MEMBER OF OUR COUNCIL
MADE A WONDERFUL PRESENTATION ON
THE RULE FOR FEASIBLE
INTERVENTIONS TO REDUCING HEALTH
DISPARITIES WORKING FROM A
BEHAVIORAL SCIENTIST PERSPECTIVE
IN CLINICAL SETTINGS.
WE'RE PROUD OF ALANNA FORDE'S
PAPER IN THE HEART STUDY
SELECTED AS A TOP PAPER IN 2020
IN THE CATEGORY OF POPULATION
SCIENCE IN THE JOURNAL OF
HYPERTENSION AND ALSO PROUD OF
CALVIN CHOI OUR FIRST PROMOTED
TENURED SENIOR INVESTIGATOR.
I ANNOUNCED THIS BEFORE BUT JUST
WANT TO REITERATE, CALVIN WAS
RECRUITED TO NIMHD BEFORE I WAS
SELECTED AS DIRECTOR.
HE WAS THE ONLY TENURE TRACK
INVESTIGATOR AT NIMHD WHEN I
ARRIVED.
HIS FOCUS IS ON TOBACCO SO
CLEARLY SOMETHING WE COULD SHARE
AND DISCUSS.
HE HAS BEEN A VERY EFFECTIVE IN
HIS RESEARCH AND NOW IS A SENIOR
INVESTIGATOR AND GAVE ONE OF THE
LECTURES THAT DR. GOTTESMAN
SPONSORED FOR ALL THE NEWLY
TENURED INVESTIGATORS AT NIH.
I WAS FORTUNATE TO BE ABLE TO
LISTEN AND WE HAVE SEVERAL
DIRECTOR'S SERIES SET FOR 2022.
I THINK WE'RE SET FOR THEM
VIRTUALLY AND THE ONE IN TWO
WEEK FROM JOAN REEDE OUR
COLLEAGUE IN COUNCIL AND MARK
HAYWARD, POPULATION SCIENTIST,
DEMOGRAPHER FROM THE UNIVERSITY
OF TEXAS AUSTIN IN MAY.
HORTENSIA AHARO WORK HAS DONE
WORK IN SUBSTANCE USE IN
POPULATIONS WITH HEALTH
DISPARITIES AND JUDITH JAMES A
LEADING SCIENTIST AND
RHEUMATOLOGIST WORKING IN
OKLAHOMA HAS DONE A LOT OF WORK
WITH BOTH THE CLINICAL
TRANSLATIONAL RESEARCH IN
RHEUMATOLOGICAL DISEASES AND
THIS IS ONE OF THE PRODUCTS OF
THE UNITE PROCESS.
I THINK WE SHOW THIS PHOTO
BECAUSE IT'S OUR OWN SHERRINE
EL-TOUKHY AND SOME MAY RECOGNIZE
DAVE WILSON THE DIRECTOR OF THE
TRIBAL HEALTH RESEARCH OFFICE
AND I THINK THIS IS NIDCR.
THERE WAS AN EFFORT TO SAY WELL,
WHEN WE WALK DOWN THE HALL WE
SEE CERTAIN KINDS OF FACES AND
WE OUGHT TO BE MORE EMBRACING OF
THE DIVERSITY AT NIH.
SO THIS IS AN EFFORT TO MAKE
THAT A REALITY.
THANK YOU FOR YOUR ATTENTION.
I WANT TO EMPHASIZE OUR EFFORTS
TO RECRUIT.
DON'T HESITATE TO REACH OUT IN
ANY WAY, SHAPE OR FORM.
THESE ARE DIFFERENT WAYS TO
REACH ME AND MY E-MAIL SHOULD BE
ON THE TITLE SLIDE AS WELL.
I'LL STOP SHARING AND DENISE, DO
WE HAVE TIME FOR A FEW
QUESTIONS?
>> I THINK SO.
ARE THERE ANY QUESTIONS?
>> FROM COUNCIL MEMBERS.
>> I HAD ONE QUESTION, SIR.
VERY INTERESTING, GREAT
PRESENTATION AND WHEN YOU TALKED
ABOUT THE CHANGING FOR
ELECTRONIC HEALTH RECORDS AND
THE NEED TO DOCUMENT THE SOCIAL
DETERMINATES INTERESTING IN YOUR
THOUGHTS ON WHO SHOULD BE ABLE
TO ENTER INFORMATION ON THE
SOCIAL DETERMINATES IN THE
MEDICAL RECORDS AND ANY THAT
COMMUNITY PARTNERS MAY HELP
PROVIDE THOSE ENTRIES AND IF YOU
THINK ONLY HEALTH CARE PROVIDERS
SHOULD BE ABLE TO ENTER
INFORMATION AND OTHER
INDIVIDUALS SHOULD BE ABLE TO
ENTER AND WHAT INFORMATION FROM
THE COMMUNITY MAY GO IN THE
RECORDS.
>> GREAT QUESTION, DON.
I THINK EMPIRICAL OPERATIONAL
RESEARCH NEEDS TO BE DONE TO
KNOW WHAT IS THE BEST WAY.
I WOULD ARGUE THAT THERE ARE
FUNDAMENTAL DEMOGRAPHIC FACTORS
ON THE POINT OF ENTRY WHEN
SOMEONE DOES AN IN TAKE AND
REGISTERS FOR A CLINIC OR
PRACTICE.
PEOPLE HAVE DONE RESEARCH ON HOW
YOU ASCERTAIN RACE AND ETHNICITY
WITHOUT ANYONE GETTING UPSET
BECAUSE THAT WAS INITIALLY A LOT
OF PUSHBACK WHO WOULD DO THAT
AND HOW DO YOU IT AND THERE'S
BEEN WORK DONE ON THAT.
LANGUAGE INFLUENCE IS ALSO
SOMETHING WE DID EMPIRICAL WORK
SHOWING A TWO-PART QUESTION IS
BETTER THAN ASKING PEOPLE DO YOU
SPEAK ENGLISH.
BECAUSE THAT WILL GET YOU NOT
ALWAYS BUT OFTEN THE WRONG
ANSWER.
PEOPLE AVOID SAYING THEY DON'T
AVOIDING AN INTERPRETER BEING
DELAYED AND PATIENTS KNOW HOW
THAT WORKS.
I THINK THERE'S OTHER FACTORS.
SHOULD IT BE A FRONT DESK PERSON
OR A CLINICAL STAFF AND I THINK
YOU'RE IMPLYING, COULD IT BE THE
INDIVIDUAL HIMSELF OR HERSELF.
YOU DO IT ONLINE.
AND I GO TO A DOCTOR VISIT AND
THEY ASK ME TO CHECK IN ONLINE
BEFORE A VISIT AND IF IT WORKS
IT'S GREAT.
I DON'T WAIT AT THE FRONT DESK
AND DON'T HAVE TO SHOW ANYTHING
AND KNOW I'M THE PERSON I'M
SUPPOSED TO BE THERE AND MY
INSURANCE INFORMATION'S THERE
AND THAT'S IT AND WAIT FOR THE
PHYSICIAN TO BE READY TO SEE ME.
THERE ARE A LOT OF FARCTORS AND
WHICH ONES MATTER WITHOUT
CREATING STIGMA OR PEOPLE THINK
WELL I'M NOT GOING TO TELL YOU
THAT I DON'T GET ENOUGH TO EAT
EVERY MONTH BECAUSE THEN YOU'LL
THINK LESS OF ME.
I DO THINK THIS IS AN AREA THAT
INCREASINGLY AS WE KNOW THESE
SOCIAL DETERMINATES ARE SO
IMPORTANT AT INFLUENCING HEALTH
AND HEALTH CARE WE NEED TO LEARN
HOW TO DO THIS BETTER BOTH WHAT
FACTORS TO COLLECT AND WHO
SHOULD COLLECT THEM AND HOW WE
SHOULD COLLECT THEM AND BE
STANDARDIZED IN THEIR APPROACH.
THANKS FOR THE QUESTION.
LISA.
>> HI, THANK YOU FOR THE
PRESENTATION.
IT'S ALWAYS GREAT IT SEE WHAT'S
GOING ON AT NIMHD WITH THE
RESEARCH COMING OUT.
I HAD A QUESTION ABOUT THE
INTRAMURAL RESEARCH YOU
PRESENTED ON DISCRIMINATION.
I DO A LOT OF WORK IN
DISCRIMINATION AND I THINK I
READ THE SLIDE CORRECTLY ASIANS
HAD THE HIGHEST RATES OF
DISCRIMINATION EVEN HIGHER THAN
AFRICAN AMERICANS, I THINK I
READ THAT RIGHT.
I WAS WONDERING IF YOU CAN TALK
A LITTLE BIT ABOUT THAT.
TWO THINGS I THOUGHT COULD BE
GOING ON IS THE TIME RANGE YOU
COLLECTED MAYBE IT WAS SOMETHING
RELATED TO COVID RELATED
MISINFORMATION BUT ALSO BECAUSE
YOU DID IT ONLINE.
COULD IT HAVE BEEN THAT PEOPLE
MORE EDUCATED AND MORE HIGHLY
RESOURCED WERE IN THE STUDIES
AND YOU MAY NOT HAVE BEEN THE
BROADER SWATH OF THE POPULATION.
>> RIGHT.
I AM GOING GO WITH WHAT I HAVE
LEARNED ON THIS.
THIS WAS CONTRACTED FROM A
COMPANY DOING A NATIONAL EXAMPLE
AND IT'S A PROBABILITY SAMPLE.
YES, THERE ARE LIMITATIONS, NO
DOUBT ABOUT IT BUT REMEMBER
UPWARDS OF 90% OF AMERICAN
ADULTS OWN A SMARTPHONE SO A LOT
OF THIS THE LESS PRIVILEGED
INDIVIDUALS ARE LIKELY TO USE
SMARTPHONES.
I THINK THE INTERNAL VALIDITY OF
THE SAMPLING OR THE EXTERNAL
VALIDITY OF THE SAMPLING IS
PRETTY GOOD BASED ON WHAT I
UNDERSTAND FROM THE METHODS
THOUGH DON'T ASK ME TO GIVE YOU
THEY'LL DETAILS.
I'M HAPPY TO HAVE ANNA OR PAULA
FOLLOW-UP WITH YOU ABOUT IT.
I DO THINK YOUR IDEA OF WHY THE
RESULTS ARE TRUE BECAUSE THERE'S
BEEN SOME BLATANT ATTACKS ON
ASIAN AMERICANS AND THE ATTACKS
AND IN SAN FRANCISCO WHICH IS A
MAJORITY -- THE LARGEST RACIAL
ETHNIC GROUP IS ASIAN AMERICAN
AND IN NEW YORK CITY AND I MEAN
SO THERE WAS CLEARLY SOMETHING
GENERATED ABOUT THE ORIGIN OF
THE VIRUS, ETCETERA, THAT LED TO
THE SPONTANEOUS EPISODES.
THAT SEEMS TO HAVE AT LEAST
DECREASED SOME IN THE LAST YEAR
IN THE LAST SIX MONTHS BUT YES,
THE TIMING MAY HAVE MAXIMIZED
THAT EVENT.
DON'T HESITATE TO REACH OUT TO
PAULA OR ANNA.
I'M SURE THEY'LL BE DELIGHTED.
YOU KNOW ANNA.
YOU CAN REACH OUT TO HER.
THANK YOU FOR THE QUESTION,
LISA.
>> THANK YOU.
>> OKAY, I THINK WE'RE GOING TO
HAVE TO GO TO BREAK AT THIS
POINT.
WE'LL HAVE APPROXIMATELY 25
MINUTES FOR A BREAK.
PLEASE RETURN AT 1:00 P.M. OR
LITTLE BEFORE.
>> THANK YOU.
SEE YOU AT 1:00.
>> OKAY.
LET'S RECONVENE.
I'M INTRODUCE THE SPEAKERS THIS
AFTERNOON.
IT'S A PLEASURE AND PRIVILEGE TO
INTRODUCE MICHAEL CHANG THE
DIRECTOR OF THE NATIONAL EYE
INSTITUTE.
MIKE, I GATHER YOU STARTED LESS
THAN TWO YEARS AGO.
I REMEMBER MEETING YOU IN PERSON
BEFORE WE WENT TO FULL TELEWORK.
THIS PRACTICE WAS ON PRACTICAL
OPHTHALMOLOGY AND HIS RESEARCH
IS APPLIED MEDICAL METHODS IN
RETINOPATHY AND PHENOTYPE
CORRELATION.
HIS GROUP HAS PUBLISHED PAPERS
AND DEVELOPED ASSISTED
ARTIFICIAL INTELLIGENCE SYSTEM
AND RECEIVED BREAKTHROUGH STATUS
FROM THE U.S. FOOD AND DRUG
ADMINISTRATION.
MIKE HAS A BACHELOR'S DEGREE IN
ELECTRICAL ENGINEER AND BIOLOGY
FROM STANFORD IN 1991 AND HIS
M.D. IS FROM HARVARD MEDICAL
SCHOOL IN THE DIVISION OF HEALTH
SCIENCES AND TECHNOLOGY AND HAS
A MASTER'S FROM COLOMBIA
AND COMPLETED HIS FELLOW.
TRAINING AT JOHNS HOPKINS AND
WORKED AT COLOMBIA AS DIRECTOR
OF STUDENT EDUCATION AND
GRADUATE STUDENT COURSE IN
BIOMEDICAL INFORMATICS.
MIKE IS ONE OF THE THANK YOU
DIRECTORS THAT CAME UNDER THE
COVID PANDEMIC AND FRANCIS
COLLINS APPOINTED ONE OF THE 22
INSTITUTE DIRECTORS WHICH IS
QUITE STRIKING.
ANOTHER IS A PRESIDENTIAL
APPOINTMENT THE NCI DIRECTOR.
IT'S GREAT TO HAVE HIM THERE AND
HIS CONTRIBUTIONS HAVE ALREADY
BEEN NOTED AND I LOOK FORWARD TO
MORE COLLABORATIONS WITH NEI.
MIKE.
>> THANK YOU FOR THE INVITATION
TO COME HERE AND SPEAK AND I
LOVE LISTENING TO THE EARLY PART
OF THE SESSION.
I LOVE THE FUN FACTS ABOUT
EVERYBODY.
LIKE ESTEBAN AND ELISEO, I WAS
IN THE SAN FRANCISCO BAY AREA
FOR THE EARTHQUAKE IN 1989.
I WAS IN NEW YORK CITY SEPTEMBER
10th.
I JUST MOVED THERE TWO MONTHS
AGO AND A LOT OF THINGS WE COULD
TALK ABOUT IF WE WERE IN PERSON.
LET ME SHARE MY SCREEN HERE.
WHAT WE DO AT THE NATIONAL EYE
INSTITUTE AND WHAT I HOPE WE CAN
DO WITH NIMHD.
YOUR PORTFOLIO AND WHAT YOU DO
IS REALLY IMPORTANT TO ME.
I CONVEY SOME OF THAT AND I HOPE
AS I TALK YOU WILL BE THINKING
THROUGH PROJECTS WE MAY BE ABLE
TO DO IN COLLABORATION.
WHEN I STARTED WE CREATED A
SOCIAL MEDIA ACCOUNT IF YOU'RE
INTERESTED NEI DIRECTOR BUT LET
ME GET STARTED.
I THOUGHT THE FIRST THING I
WOULD DO IS WE'VE ALL GOT OUR
STORIES AND I THOUGHT I WOULD
TELL YOU A LITTLE BIT OF MY
BACKGROUND AND HIGHLIGHT SOME OF
THE PARTS THAT MAY BE OF REF --
RELEVANCE TO DISCUSSION.
THE PARENTS MADE HERE FROM
TAIWAN IN THE LATE 1960s A FEW
YEARS BEFORE I WAS BORN AND THE
FIRST PLACE THEY LIVED WAS SOUTH
CAROLINA IN THE LATE 1960s AND
THAT PART OF THE COUNTRY WAS
SEGREGATED BACK THEN AS I KID I
HEARD STORIES HOW THEY CAME TO
WHAT WAS THE MOST ADVANCED
COUNTRY IN THE WORLD THAT IS
WHAT THEY SAW AND THEY WERE
MARRIED IN COLOMBIA, SOUTH
CAROLINA AND MOVED TO PITTSBURGH
A FEW YEARS LATER WHICH IS WHERE
I WAS BORN.
MY DAD WAS A GRAD STUDENT THERE
AND SO WHEN I WAS ABOUT 1 OR 2
WE MOVED TO DETROIT, MICHIGAN
WHAT I CONSIDER MY HOMETOWN.
THE REASON WE MOVED THERE IS MY
DAD WORKED FOR FORD MOTOR
COMPANY.
DETROIT IS ABOUT THE U.S. AUTO
INDUSTRY AND ALMOST EVERYONE IN
THE AREA WORKED FOR ONE OF THE
CAR COMPANIES IN THE EARLY 1970s
AND '80s THE IS U.S. AUTO
INDUSTRY WAS GETTING HIT HARD
AND THERE WAS A LOT OF ANIMOSITY
PROJECTED TO JAPANESE BECAUSE OF
THAT AND IN DETROIT THERE WAS A
LOT OF ANTI-ASIAN SENTIMENT
STEMMING FROM THE AUTO INDUSTRY
AND THERE WAS THE VINCENT CHEN
CASE.
I IMAGINE SOME ARE FAMILIAR BUT
I WANT TO MENTION IT BECAUSE
IT'S SOMETHING THAT HAPPENED
WHEN I WAS GROWING UP THERE THAT
MADE AN IMPRESSION ON ME.
THE SENTIMENT WAS THERE WAS A
LOT OF ANTI-ASIAN FEELING.
VINCENT CHEN IS SOMEONE WHO AT
HIS BACHELOR PARTY GOT IN A
FIGHT IN A BAR FROM WHO
UNEMPLOYED AUTO WORKERS WHO
BLAMED HIM FOR LOSING HIS JOBS
AND WAS BRUTALLY MURDERED THAT
NIGHT AND THE TWO PEOPLE WERE
ARRESTED THAT DID THAT AND THERE
WAS A TRIAL AND DURING THE TRIAL
THERE WAS NEVER ANY DOUBT THE
PEOPLE DID IT BUT THE COMMENT
WAS MADE BY THE JUDGE THAT THE
PUNISHMENT SHOULD FIT THE
CRIMINAL NOT THE CRIME AND THESE
WERE PEOPLE WHO HAD NEVER BEEN
IN JAIL AND THEY WERE SENTENCED
TO $3,000 EACH AND A PROBATION.
THAT CAUSED A LOT OF ANGER
WITHIN THE ASIAN COMMUNITY.
THIS WAS A COMMUNITY THAT HADN'T
HAD A HISTORY OF RESPONDING TO
THIS SORT OF THING.
THE ASIAN COMMUNITY LEARNED FROM
THE BLACK COMMUNITY AND THERE
WERE A LOT OF THINGS THAT CAME
UP OUT OF THIS AND ONE OF THE
THINGS I LEARNED FROM THAT AND
THAT I APPRECIATED CAME UP
DURING THE DISCUSSION THIS
MORNING I LISTENED IN ON IS I
THINK THERE'S SO MANY COMMON
ISSUES WHEN IT COMES TO MINORITY
HEALTH AND HEALTH DISPARITIES
THAT CROSS DIFFERENT
COMMUNITIES.
SO I WANTED TO SHARE THOSE
THINGS BECAUSE THEY GIVE A SENSE
OF WHAT MY WORLD VIEW IS.
IS THE OTHER PART OF THIS IS
THAT ALMOST EVERYBODY IN MY
FAMILY WAS AN ENGINEER AND WHEN
I GREW UP I'D NEVER CONSIDERED
STUDYING ANYTHING OTHER THAN
ELECTRICAL ENGINEERING AND I
WENT OFF TO STUDY AND STUDY
ELECTRICAL ENGINEERING.
IT HAPPENED I SPENT ONE SUMMER
WORK IN A START-UP COMPANY IN
MOUNTAIN VIEW, CALIFORNIA THAT
BUILT CARDIAC ULTRASOUND
MACHINES AND WE WROTE TERMS TO
ANALYZE IMAGES THEY HAPPEN TO
COME FROM CARDIAC MEASURES AND
THOSE THINGS MADE THE FEEL LIKE
I WANTED TO BECOME A PHYSICIAN
AND WENT TO MEDICAL SCHOOL AND
THOUGHT I'D APPLY TECHNOLOGY AND
DEVELOP TECHNOLOGIES AND USE
THEM FOR PATIENT CARE.
IT TURNS OUT IN THE 1990s AS A
MEDICAL STUDENT COMPUTATIONAL
NEUROSCIENCE WAS A HOT TOPIC AND
THOUGHT I COULD BECOME A
NEUROSURGEON AND BUILD COMPUTER
DEVICES TO SIMULATE THE BRAIN
AND ENDED WORKING IN A LAB IN
MEDICAL SCHOOL THAT STUDIED IT
WAS ANYONE IN THE DIVISION OF
NEUROSURGERY RESEARCH AND THE
LAB STUDIED NEUROSCIENCE AND
INFORMATION SYSTEMS AND NEURONS
BUT HAPPEN TO BE IN THE RAPID
RETINA AND THAT'S HOW I LEARNED
ABOUT OPHTHALMOLOGY AND HOW I
BECAME AN OPHTHALMOLOGIST.
THIS IS NOW THE LATE 1990s,
EARLY 2000s, ALMOST ALL MEDICAL
RECORDS WERE PAPER BASED AND
RADIOLOGICAL STUDIES WERE ALL
FILM BASED.
I GOT TO THINKING MAYBE WHAT WE
DON'T NEED IS PEOPLE WHO BUILD
MORE DEVICES.
MAYBE WE NEED PEOPLE WHO MANAGE
DATA SO I BECAME INTERESTED IN
BIOMEDICAL INFORMATICS.
AT THE TIME THERE WAS NO CLEAR
PATHWAY.
IT WASN'T A NATURAL THING PEOPLE
DID BACK THEN.
I WAS AT JOHNS HOPKINS AND THERE
WAS A GUY, KEVIN JOHNSON HERE, A
PEDIATRIC, WHO WAS A JUNIOR MID
CAREER FACULTY MEMBER AND TURNS
OUT MY WIFE WAS A PEDIATRIC
RESIDENT AND ALSO NEW KEVIN SO I
ASKED KEVIN AND WE SAT DOWN FOR
AN HOUR AND A SAID YOU HAVE TO
HELP ME I WANT TO DO INFORMATICS
BUT I DON'T KNOW WHAT TO DO AND
THAT'S WHAT HE WAS AN EXPERT AT
HOPKINS AT AND HE SAID NUMBER
ONE, YOU HAVE TO DO A FELLOWSHIP
IN INFORMATICS.
IT'S NOT ENOUGH TO HAVE AN
ENGINEERING DEGREE.
YOU NEED FORMAL TRAINING AND
ENCOURAGED ME TO WORK WITH
SOMEBODY WHO HAD STARTED A
PROGRAM AT STANFORD AND THEN
MOVED TO COLOMBIA UNIVERSITY.
THAT CONVERSATION CHANGE THE
COURSE OF MY LIFE.
AND WE DESIGNED STUDIES THAT
EVENTUALLY THAT LED KNOW WORK AT
COLOMBIA APPLYING TELEHEALTH TO
RETINOPATHY DIAGNOSIS AND THERE
WERE CHALLENGES INVOLVING
DELIVERY AND ACCESSORY OF EYE
CARE FOR BABIES AND THIS IS A
DISEASE, R.O.P. THAT AFFECTS
DISPROPORTIONATE COMMUNITIES
BECAUSE THEY DON'T GET GOOD CARE
AND WE DESIGNED SYSTEMS AND THEY
MADE THEIR WAY INTO THE STANDARD
OF CARE OVER THE NEXT 10 YEARS
BUT I SPENT NINE YEARS AT
COLOMBIA AND THEN MOVED TO
PORTLAND, OREGON AND WE STARTED
TO BUILD ARTIFICIAL INTELLIGENCE
SYSTEMS AND GOT FDA BREAK
THROUGH STATUS AND I LEARNED A
LOT FROM THAT ABOUT HOW TO NOT
ONLY DO WORK BUT TRANSLATE IT
INTO REAL-WORLD CARE AND HOW
LARD THAT IS SOMETIMES.
THE OTHER THING I WANTED TO
POINT OUT IS THAT IN TERMS OF
DEMOGRAPHICS AND THINGS LIKE
PREMATURITY, THE PLACES THAT
I'VE WORKED -- I'VE TRAINED IN
BALTIMORE, MARYLAND AT HOPKINS
AND THERE'S A VERY LARGE BLACK
POPULATION IN THE AREA AROUND
JOHNS HOPKINS.
STARTED MY CAREER AT COLOMBIA
UNIVERSITY LOCATED IN WASHINGTON
HEIGHTS WHICH HAS A
PREDOMINANTLY HIGH DOMINICAN
POPULATION AND WORKED FOR THE
LAST 10 YEARS IN OREGON WHERE
THERE WERE A LOT OF ISSUES
DELIVERING CARE TO RURAL OREGON
AND IT'S BEEN INTERESTING TO SEE
WHAT THE CHALLENGES ARE
THROUGHOUT THE COUNTRY.
ANYWAY, DURING THE PAST SEVEN OR
EIGHT YEARS SPENT MORE TIME
WORKING IN DATA SCIENCE AND BIG
DATA AND BUILD A RESEARCH
PROGRAM THAT STARTED TO INVOLVE
ELECTRONIC HEALTH RECORD
IMPLEMENTATION AND DESIGN AND
WORKED A LOT WITH THE AMERICAN
ACADEMY OF OPHTHALMOLOGY IN
BUILDING A NATIONAL REGISTRY OF
EYE EXAMINES WHICH TURNS OUT TO
BE NOW ONE OF THE LARGEST
COLLECTIONS OF SPECIALTY DATA
ANYWHERE IN THE WORLD 400
MILLION PLUS EYE EXAMS.
IT'S BEEN ABOUT A YEAR SINCE
I'VE BEEN IN THIS JOB AND I
FIRST MET ELISEO, MARCH 10, 2020
THE DAY OF MY IN-PERSON
INTERVIEW AND DAY OR TWO BEFORE
THE COUNTRY SHUT DOWN DUE TO THE
PANDEMIC.
LET ME TALK ABOUT WHAT WE DO AT
THE EYE INSTITUTE.
I WANT TO START WITH WHY DOES
VISION MATTER?
I THINK ONE OF THE REASONS IS
THAT THERE'S ENORMOUS IMPACT OF
VISION ON QUALITY OF LIFE.
MULTIPLE SURVEYS HAVE SHOWN THAT
IF YOU ASK PEOPLE THEY
CONSISTENTLY RESPOND BLINDNESS
IS ONE OF THE THINGS AMERICANS
FEAR MOST.
IF YOU CAN'T SEE IT IMPACTS
DAILY LIVING AND I REMEMBER MY
DAUGHTER'S FIRST STEPS AND I
REMEMBER THE VISUAL IMAGERY AND
WON'T FORGET THAT BECAUSE VISION
LINK TO HUMAN EMOTION.
WHEN PEOPLE LOSE VISION THERE'S
THE RISK OF ISOLATION AND
DEPRESSION AND ACCELERATED
DEMENTIA.
THERE WAS A STORY ABOUT THIS IN
THE NEW YORK TIMES A COUPLE
WEEKS AGO.
BEYOND THAT THERE'S THE IMPACT
OF VISION RESEARCH ON SCIENCE
OVERALL.
ONE THING WE'RE PROUD OF IS THAT
WE FUNDED AT THE NEI THE WORK OF
EIGHT NOBEL PRIZE WINNERS.
THE POINT I WANT TO MAKE FROM
THAT IS THERE'S A LOT OF
SEMINOLE INNOVATIONS THAT HAVE
OCCURRED FIRST IN THE EYE OR
VISUAL SYSTEM BECAUSE IT'S AN
ACCESSIBLE SETTING FOR DOING
RESEARCH THAT GETS GENERALIZED
TO OTHER AREAS.
I'LL SHOW A FEW EXAMPLES ABOUT
THAT LATER ON.
EVERY ORGANIZATION HAS THEIR
MISSION STATEMENTS.
WHEN I STARTED WE TOOK A LOOK AT
THAT BECAUSE IT AREN'T BEEN
REVISED AND WE WORKED WITH
INTERNAL AND EXTERNAL STAKE
HOLDERS AND OUR MISSION IS TO
ELIMINATION VISION LOSS AND
IMPROVE QUALITY OF LIFE THROUGH
RESEARCH AND PROVIDE RESEARCH IN
FOUR AREAS.
NUMBER 1 IS WE DRIVE INNOVATIVE
RESEARCH AND 2, WE FOSTER
COLLABORATION, 3, WE WANT TO
RECRUIT INSPIRE AND TRAIN A
TALENT AND DIVERSE GENERATION TO
STRENGTHEN THE WORKFORCE AND 4,
EDUCATE PEOPLE ABOUT BASICALLY
BLAH -- WHAT WE DO AND WHY IT'S
IMPORTANT.
I'M HOPING TO MAKE SURE WE'RE A
MISSION-DRIVEN ORGANIZATION AND
I JUST WANT TO HIGHLIGHT THAT
DIVERSITY AND TRAINING ARE
SOMETHING THAT I VIEW AS
CRITICAL TO OUR MISSION AT THE
EYE INSTITUTE.
LET ME SPEND A FEW MINUTES
TALKING ABOUT EYE DISEASE IN
DISPARITY POPULATIONS.
ONE POINT TO MAKE FROM THIS IS
THERE ARE HUGE CHALLENGE WE HAVE
IN THIS COUNTRY IN TERMS OF
ACCESSIBILITY TO EYE CARE.
JUST TO STATE THE OBVIOUS AND
THE PANDEMIC EXPOSED A LOT OF
HEALTH CARE DISPARITIES WE HAVE
AND SOME OF WHAT I'LL BE TALKING
ABOUT THIS WAS ALL UNDERLYING
ISSUES BEFORE COVID AND LIKE
EVERYTHING ELSE IT'S GOTTEN
WORSE.
ONE IS GLAUCOMA.
PEOPLE THINK IT'S RELATED TO
HIGH EYE PRESSURE.
IF YOU LOOK AT THE EPIDEMIOLOGY,
GLAUCOMA AFFECTS AFRICAN
AMERICANS AT A RATE FOUR TO FIVE
TIMES THAT OF WHITE AMERICANS.
IN GENERAL DISPROPORTIONATELY
AFFECTS MINORITY POPULATIONS AND
NOT COMPLETE UNDERSTANDING WHY
THAT IS.
IT'S FELT THERE'S CLEARLY
ACCESSIBILITY TO CARE ASPECT AND
STUDIES SHOW THERE'S PROBABLY A
GENETIC ASPECT AS WELL.
WE FUNDED A LOT OF GLAUCOMA
CONSORTIA WORK.
THERE'S AN EYE DROPS AND LACE
-- LASERS AND WE HAVE TO GET
PEOPLE TO CARE.
FOR DIABETICS IF THE SYSTEMIC
DISEASE ISN'T TREATED PEOPLE
LOSE VISION AND GO BLIND WITHIN
THE EYE OR FROM RETINAL
DETACHMENT AND THE GOOD NEWS IS
THERE'S WAYS TO CONTROL AND
TREAT IT.
LASER THERAPY, INJECTIONS INTO
THE EYE EFFECTIVE AT PREVENTING
VISION LOSS AND THE PROBLEM IS
THAT WE DON'T ALWAYS DO A GOOD
JOB OF IDENTIFYING AND MANAGING
THESE PATIENTS AND MINORITIES
ARE PARTICULARLY AT RISK FOR
THIS.
THIS HAPPENS TO BE A STUDY THAT
MINORITY YOUTH INCLUDING BLACK,
HISPANIC, ASIAN ARE 40% LESS
LIKELY TO HAVE A DIABETIC EYE
EXAM AND FIVE TIMES MORE LIKELY
TO HAVE DIABETIC RETINOPATHY.
MYOPIA.
EYE GLASSES.
IT'S NOT A PARTICULARLY SEXY
PROBLEM BUT WHEN UNDETECTED THE
ISSUE THERE COULD BE ENORMOUS
IMPACT ON NOT GETTING GLASSES
AND DEVELOPMENT OF VISUAL
SYSTEM.
LEARNING AND DEVELOPMENT FROM
UNDETECTED EYE GLASSES.
THE ISSUES HERE ARE THAT THERE'S
SIX TIMES HIGHER RISK OF MYOPIA
IN AFRICAN AMERICAN KIDS AND
THREE TIMES MORE IN HISPANIC
CHILDREN.
INTERNAL OF ASTIGMATISM IT'S
1.5-1 RATIO IN TERMS OF DELIVERY
AND ACCESSIBILITY OF EYE CARE
FOR KIDS AND CATARACT IS THE
NUMBER ONE MOST COMMON PROCEDURE
DONE IN AMBULATORY CENTERS IN
THE U.S. AND THERE'S AN
EFFECTIVE TREATMENT FOR CATARACT
BUT AGAIN MINORITY POPULATIONS
IN THIS COUNTRY LIKELY TO HAVE
VISUAL LOSS FROM UNOPERATED CAT
RABB
-- CATARACT AND A BALTIMORE
SURVEY SHOWED AFRICAN AMERICANS
ARE FIVE TIMES MORE LIKELY TO
NOT HAVE THE SURGERY AND
HISPANICS HAVE HIGHER RATES OF
VISUAL IMPAIRMENT FROM UNTREATED
CATARACT.
AT THE END OF THE DAY IN TERMS
OF VISUAL LOSS AND BLINDNESS,
THIS IS ONE OF THE LEADING
CAUSES OF DISABILITY IN THE
U.S. AND WE KNOW THERE'S
ENORMOUS PUBLIC HEALTH AND
ECONOMIC IMPACT AND
DISPROPORTIONATELY AFFECTED HIGH
RISK GROUPS.
ONE THING WE TRIED TO MESSAGE TO
OUR COMMUNITY IS THE BOTTOM IN
BOLD HERE THAT EVEN THE BEST
SCIENTIFIC ADVANCES WE FUND, THE
REMARKABLE BREAKS THROUGH IN
SCIENCE, THEY'RE REALLY NOT THAT
REMARKABLE IF WE CAN'T MAKE THEM
ACCESSIBLE TO THE ENTIRE
POPULATION.
WE'RE TRYING HARD WITH THIS
MESSAGE.
I ALLUDED TO THE CONCEPT OF
INNOVATION IN RESEARCH AND I
WANT TO SHOW EXAMPLES OF THAT
FROM A PURE METHODOLOGICAL
PERSPECTIVE AND ONE IS IMAGING.
FOR DECADES NOW THERE HAVE BEEN
RETINAL IMAGING AND IN THE PAST
20, 25 YEARS THERE'S BEEN A
REVOLUTION IN OCT, OPTIMAL
COHERENCE TOMOGRAPHY AND THIS IS
THE OPTIC NERVE AND WHAT GETS
AFFECTED IN GLAUCOMA, FOR
EXAMPLE, AND THIS IS OCT.
AND THESE ARE DIFFERENT AS YOU
MOVE ALONG YOU'LL SEE THIS IN
CROSS SECTION.
THE ISSUE IS THAT ALL THESE
LAYERS OF THE RETINA AND ALL THE
FINDINGS CAN BE SEGMENTED
AUTOMATICALLY AND QUANTIFIED.
WITH RESOLUTION THAT'S BASICALLY
CAPILLARY RESOLUTION AND
APPROACHES THAT OF HISTOLOGY.
WHAT THAT HAS DONE IS OPENED UP
ENORMOUS RESEARCH OPPORTUNITIES
IN DATA SCIENCE, ARTIFICIAL
INTELLIGENCE, BECAUSE WE CAN
QUANTIFY ALL THESE THINGS.
I'LL TALK ABOUT THAT IN THE NEXT
SLIDE AND THAT'S IMPORTANT FOR
THINGS LIKE A.I. AND IT PROVIDES
OBJECTIVE DATA TO SUPPORT OTHER
RESEARCH STUDIES.
ELISEO ALLUDED TO ISSUES LIKE
SOCIAL DETERMINATES OF HEALTH
AND BIAS AND ALL THESE CLINICIAN
COLLECTED TERMS HAVE POTENTIAL
FOR BIAS AND WHEN WE HAVE
SUBJECTIVE DATA IT'S IMPORTANT
FOR ALL STUDIES.
ANOTHER INNOVATION IN EYE CARE
IS ARTIFICIAL INTELLIGENCE I
CAPTURED THIS TWEET OF ALL THE
MEDICAL SPECIALTIES MOST PEOPLE
THINK RADIOLOGY IS LEADING THE
A.I. MOVEMENT BUT IT'S ACTUALLY
OPHTHALMOLOGY AND IT'S THE
BECAUSE OF THE THINGS WE TALKED
ABOUT BEFORE, IMAGES AND
STRUCTURED DATA FROM THE E.H.R.
AND CLINICAL DIAGNOSIS AND THE
FIRST CLEARED FIELD WAS FOR
DIABETIC RETINOPATHY AND A GROUP
IN IOWA HAVE DONE THIS.
THE FOLKS AT GOOGLE HAVE DONE
WORK INVOLVING KNOWLEDGE
DISCOVERY AND CONNECTING IT TO
HEALTH AND USING DATA SETS OF
HUNDREDS OF THOUSANDS OF RETINAL
RECORDS AND IDENTIFIED HOW OLD A
PERSON IS AND FOR MOST
OPHTHALMOLOGIST IT'S NOT A SHOCK
BECAUSE WE CAN LOOK AT THE
RETINA AND TELL IF IT PROBABLY
COMES FROM SOMEBODY WHO OLDER OR
YOUNGER BUT THEY WERE ABLE TO
TRAIN THE DEEP LEARNING SYSTEMS
PURELY FROM LOOKING AT A RETINAL
PHOTO TO DETERMINE IF IT CAME
FROM A MALE OR FEMALE PATIENT
WITH ALMOST COMPLETE ACCURACY
AND THAT STUNNED PEOPLE IN THE
VISION COMMUNITY BECAUSE THERE'S
NO WAY WE CAN LOOK AT A RETINA
AND TELL IF IT'S A MALE OR
FEMALE RETINA.
SO MAYBE THERE'S GOING TO BE
SOMETHING WE CAN GET OUT OF
THESE PIXELS THAT HELPS US IN
TERMS OF KNOWLEDGE OF DISCOVERY
AND FROM A DATA SCIENCE
PERSPECTIVE.
A LOT OF POTENTIAL FOR THIS.
I WANT TO TALK ABOUT GENETICS AS
ANOTHER INNOVATION.
GWAS GENOME WISE ASSOCIATION
STUDIES, ONE OF THE FIRST
SUCCESSFUL STUDIES WAS FOR
AGE-RELATED MACULAR
DEGENERATION.
THERE'S BEEN WORK IN THE EYE
FIELD.
FIRST FDA APPROVED GENE THERAPY
FOR ANY INHERITED DISEASE IN ANY
FIELD OF MEDICINE WAS ENVISION
FOR LABOR CONGENITAL AMAUROSIS
THAT CAUSES KIDS TO GO BLIND
GENERALLY WITHIN THE FIRST YEAR
OF LIFE.
THIS IS A VIDEO FROM THE
UNIVERSITY OF PENNSYLVANIA WHO
DID A LOT OF THE ORIGINAL WORK
INVOLVING GENE THERAPY AND
YOU'LL SEE HERE THIS IS BEFORE
GENE THERAPY AND THE RIGHT SIDE
IS AFTER GENE THERAPY.
TO MEASURE THESE PATIENTS'
VISION AND QUANTIFY IT WE USED
MOBILITY MAZES BECAUSE THEY
COULDN'T READ ANYTHING NEAR THE
BIG E ON THE PIE CHART AND
THEY'RE QUANTIFIABLE BUT BEFORE
SHE CAN'T EVEN NAVIGATE THE EYE
CHART AND AFTER SHE'S WORK
REALLY GOES THREE IT AND AT THE
BEGINNING OF MY CAREER IF
SOMEBODY TOLD ME IT'D BE
AVAILABLE I WOULD HAVE THOUGHT
IT'S SCIENCE FICTION BUT GOES TO
THE EYE BEING ACCESSIBLE AND
DELIVER GENE THERAPY PRECISELY.
IN TERMS OF GENETICS, A FEW
EXAMPLES OF WHAT WE'VE DONE IN
DIVERSE POPULATIONS HERE.
WE MENTIONED GLAUCOMA, AFRICAN
AMERICANS HAVE HIGHER RISK FOR
GLAUCOMA, WE FUNDED SEVERAL
COLLABORATIVE STUDIES LOOKING AT
CAN WE IDENTIFY GENETIC MARKERS
SPECIFIC TO DIFFERENT RACES AND
WE'VE GOT AN EYES ON AFRICA
PROJECT A NETWORK OF SITES IN
AFRICA TO EXPLORE DIFFERENT GENE
ENVIRONMENT INTERACTIONS THAT
ARE RELEVANT TO EYE DISEASE.
WITH THIS I WANT TO TALK ABOUT
FUTURE DIRECTIONS AND WHAT WE
MAY BE ABLE TO DO TOGETHER.
WE GOT A STRATEGIC PLAN THAT WE
PUBLISHED ABOUT TWO MONTHS AGO
AND IF YOU GO TO THIS SITE HERE
IT WILL TAKE YOU TO THE
EXECUTIVE SUMMARY IS ABOUT 15
PAGES.
ELISEO WAS THE ONE INSTITUTE
DIRECTOR THAT I SPECIFICALLY
REACHED OUT TO TO ASK OPINIONS
ABOUT THIS AND I KNOW ELISEO,
FORGIVE ME IF I GET THE NAME
WRONG, TILDA FELLHOF AND WE
BROKE OUR PLAN INTO SEVEN
CROSS-CUTTING AREAS OF EMPHASIS,
GENETICS, IMMUNOLOGY, MEDICINE
AND QUALITY OF LIFE AND PUBLIC
HEALTH AND DISPARITIES.
I WANT TO TALK ABOUT A FEW
THINGS THAT MAY BE OF INTEREST
TO THIS GROUP.
NUMBER ONE, IS DELIVERY OF EYE
CARE.
AS STATED WE HAVE A LOT OF
CHALLENGES AND TELEHEALTH IS ONE
THING WE'RE INTERESTED IN.
CAN WE DELIVER HEALTH CARE/EYE
CARE REMOTELY AND CAN IT BE A
MECHANISM TO DELIVER POPULATION
HEALTH?
WE HAVE TO EVALUATE THE COST
EFFECTIVENESS AND I DON'T THINK
IT WILL LOOK LIKE FEE FOR
SERVICE WHERE PEOPLE GET
REIMBURSED WITH REMOTE WE HAVE
TO COME UP WITH NEW MODELS FOR
CARE AND WE HAVE EXAMPLES IN OUR
PORTFOLIO.
I MENTIONED TELEHEALTH AND
R.O.P. AND HAVE AN INVESTIGATOR
IN WISCONSIN DOING
IMPLEMENTATION SCIENCE FOR
IMPROVING DIABETIC RETINOPATHY
AND WE NEED TO BETTER UNDERSTAND
SOCIAL DETERMINATES RELATED TO
TO VISION CARE AND WHY ARE
PEOPLE GOING BLIND DUE TO VISION
LOSS IN 2022 AND HOW CAN WE
INTEGRATE THE SOCIAL
DETERMINATES AND DATA ELEMENTS
AND BE ABLE TO IMPROVE THIS.
I KNOW SOME OF THAT CAME UP IN
THE DISCUSSION EARLIER TODAY.
WE HAVE SOME ON K GRANTS
STUDYING SOCIAL DETERMINATES OF
EYE HEALTH AND HOPING WE CAN
CULTIVATE SOME OF THEIR CAREERS.
BRIAN CHOI AND CATHY SUNG AND
ONE THING WE IDENTIFIED IS DATA
SCIENCE AND DATA SHARING.
ARTIFICIAL INTELLIGENCE, WE
TALKED ABOUT ALL THE AMAZING
THINGS THAT HAVE GONE ON BUT WHY
ISN'T THIS A SOLVED PROBLEM NOW?
IT'S FAR FROM SOLVED AND ONE OF
THE CHALLENGES IS
GENERALIZABILITY AND BIAS.
THIS DATA CAME FROM A
COLLABORATOR IN BOSTON.
THE UNDERLYING CHALLENGE IS SO
MUCH OF THE RESEARCH THAT'S BEEN
DONE IN DATA SCIENCE AND A.I.
COMES FROM A FEW MAJOR ACADEMIC
CENTERS AND THE DATA SETS ARE
OFTEN RELATIVELY HOMOGENOUS AND
THE REAL WORLD IS HETEROGENEOUS
AND DIFFERENT POPULATIONS AND
IMAGING DEVICES.
IN GENERAL YOU CANNOT TAKE DATA
FROM RUN RACE AND ONE MEASURE
AND TRANSPOSE IT TO ANOTHER ONE
AND THIS DIDN'T WORK AND THE
CHART SHOWS IT DOESN'T WORK.
S ON TOP OF THAT IN THE REAL
WORLD THE DATA IS POORER QUALITY
THAN ACADEMIC CENTERS AND
SUBJECT TO IT BIASES IN DATA
COLLECTION.
WE NEED LARGER AND MORE DIVERSE
DATA SETS AND VALIDATE ACROSS
POPULATIONS AND DEVICES AND
BETTER DATA SHARING.
IN THE SPIRIT OF DATA SHARING IT
WILL BE TRUE FOR A.I. AND
RESEARCH INVOLVING MECHANISMS OF
DISEASE AND MULTI OMICS ANALYSIS
AND WHY IS THIS IMPORTANT?
THE EXAMPLE, WE ALL KNOW OF THIS
SITUATION WHERE THERE'S MULTIPLE
STUDIES GOING ON IN CENTERS
ACROSS THE COUNTRY THE BOSTON
STUDY AND SAN FRANCISCO AND
OREGON STUDY.
THEY'RE ALL INDIVIDUALLY UNDER
POWERED TO MOVE THE FIELD
FORWARD YET WE CAN'T COMBINE
DATA BECAUSE TE DATA -- THE DATA
IS GATHERED IN SLIGHTLY
DIFFERENT CONDITIONS AND HOPING
WE CAN TAKE ADVANTAGE OF THE
DATA WE'RE ALL DOING.
AT NIH I THINK YOU KNOW WE HAVE
A DATA SHARING POLICY GOING INTO
EFFECT JANUARY 2023 AND THAT'S A
STICK.
WE'RE IN THE FUNDING RESEARCH
UNLESS YOU SHARE YOUR DATA BUT I
THINK WE NEED CARROTS IN
ADDITION TO THAT.
ONE OF THE THINGS WE DID WAS
WORKED WITH THE EDITORS OF ONE
OF THE MAJOR VISION JOURNALS TO
CREATE A NEW PUBLICATION TYPE
THAT'S CALLED A DATA SET.
WHERE THE IDEA IS THAT
INVESTIGATORS WOULD BE
INCENTIVIZED TO GET ACADEMIC
CREDIT BY PUBLISHING YOUR DATA
SETS AND OTHER PEOPLE COULD FIND
IT USING PUB MED.
MY VIEW IS I DON'T FEEL THAT OUR
COMMUNITY COMPLETELY GETS THE
BENEFITS OF DATA SHARING YET AND
WE NEED TO BRING ABOUT THAT
GRADUAL CULTURE SHIFT TO BE ABLE
TO PROMOTE THINGS LIKE A.I.
THROUGH BIGGER DATA SETS AND
MORE DIVERSE DATA SETS.
QUICK EXAMPLES HERE OF WHAT'S
GOING ON TRANS-NIH THE COMMON
FUND HAS FUNDED A BRIDGE TO A.I.
INITIATIVE BASED ON THE PREMISE
CAN WE BUILD LARGER DATA SETS
AND THIS IS A $100 MILLION
PROJECT OVER FOUR YEARS.
RECIPIENTS HAVEN'T BEEN
ANNOUNCED YET.
THE SECOND INITIATIVE I WANT TO
MAKE SURE YOU'RE AWARE OF IS
CALLED AIM AHEAD THROUGH THE
OFFICE OF DATA SCIENCE STRATEGY.
I'M INTERESTED IN THIS.
I'M THE CO-CHAIR OF AN ADVISORY
COMMITTEE BEING FORMED TOGETHER
WITH PATTY BRENNAN FROM THE
NATIONAL LIBRARY OF MEDICINE AND
WHAT AIM AHEAD TRIES TO DO IS
USE ARTIFICIAL INTELLIGENCE TO
ADDRESS CHALLENGES IN HEALTH
DISPARITIES AND MINORITY HEALTH
AND WHAT IS BEING DONE WITH THIS
IS BUILDING DATA WORKFORCE IN
MARGINALIZED COMMUNITIES,
DEVELOPING DIVERSE DATA SETS,
TRAINING A SET OF DIVERSE
RESEARCHERS AND DEVELOPING
ARTIFICIAL INTELLIGENCE
APPROACHES TO DETECT BIAS.
REALLY IMPORTANT.
ONE OF THE REASONS I THINK THIS
IS PARTICULARLY IMPORTANT WE
ALLUDED TO EARLIER THAT WHEN WE
STUDIED BIAS IN THE MEDICAL
RECORD IT'S OFTEN BASED ON WHAT
A DOCTOR OR NURSE OR SOME
CLINICIAN WRITES BASED ON THEIR
OBSERVATIONS OR NOTES AND THAT'S
OFTEN SUBJECTIVE.
I'M HOPING OBJECTIVE IMAGE DATA
FROM THE EYE OR OTHER ORGAN CAN
HELPS US ANCHOR THAT SORT OF
RESEARCH.
A LOT GOING ON WITH THIS AND THE
PERSON WHO IS IN CHARGE OF THE
ODSS IS SUSAN GREGURICK AND I
THINK THERE'S A LOT OF
OPPORTUNITIES WE SEE ALSO IN
TERMS OF ACCESSIBILITY FOR
VISUALLY IMPAIRED PEOPLE.
WE LIVE IN A WORLD THAT'S
INCREASINGLY RELIANT ON
COMPUTING AND MOBILE DEVICES AND
SO FOR PEOPLE WHO CAN'T SEE THIS
IS A HUGE PROBLEM.
SO WHAT DO WE NEED?
INNOVATION TO IMPROVE
ACCESSIBILITY.
ONE OF THE WAYS THIS HAS COME UP
RECENTLY IS HOME COVID TESTS.
THIS ARTICLE IN THE NEW YORK
TIMES A WEEK AGO BLIND PEOPLE
ARE NOT ABLE TO DO THIS BECAUSE
THEY CAN'T SEE THE PINK STRIPE.
JUST TODAY AT THE NEI WE
PUBLISHED A NOTICE OF SPECIAL
INTEREST TO CALL ATTENTION TO
THIS WITH THE LINK DOWN HERE AND
I TALKED WITH ELISEO ABOUT THE
IT RADXUP INVOLVING COVID
TESTING.
MAYBE WE CAN TRY TO USE THINGS
LIKE THIS AS A MECHANISM TO
IMPROVE ACCESSIBILITY BY THE
VISUALLY IMPAIRED POPULATION AS
A VULNERABLE POPULATION THAT AND
BEYOND THAT MAYBE DEVELOP MOBILE
APPS TO COMBINE COMPUTER VISION
AND ARTIFICIAL INTELLIGENCE AND
TO HELP PEOPLE NAVIGATE BETTER.
THIS IS MY ALMOST LAST SLIDE.
ONE THING WE'RE ALSO INTERESTED
IN IS TRAINING AND WORKFORCE
SATISFACTION.
WE LIKE EVERYBODY ELSE BELIEVES
WE HAVE TO HAVE A PIPELINE OF
YOUNG PEOPLE WHO UNDERSTANDS
RESEARCH AND ONE THING IS MAKING
PEOPLE BETTER GRANT REVIEWERS.
WE STARTED A GRANT REVIEWER
PROGRAM AND WE'RE PARTICULARLY
ENCOURAGING PEOPLE FROM UNDER
REPRESENTED GROUPS FROM APPLY
AND GO TO THIS SITE HERE AND YOU
CAN SIGN UP APPLY AND MEET THE
NEI STAFF AND LEARN ABOUT
REVIEWING IN A PRINCIPLED WAY
AND HAVE OUR SCIENTIFIC REVIEW
OFFICERS CONTRIBUTE TO THIS
PARTICULAR TO THIS AND BRIAN
BOSHAW LED THIS WITH CATHY
ANDERSON.
LET ME JUST AND TO POINT OUT
THERE ARE A LOT OF NIMHD
INITIATIVES THAT WE'VE SIGNED ON
TO AND I'M HOPING WE CAN FIND
SOME COMMON GROUND HERE TO FUND
IN TERMS OF EYE DISEASE AND
DISPARITIES.
SO MY LAST SLIDE HERE WHAT ARE
SOME AREAS OF POTENTIAL
COLLABORATION, DELIVERING EYE
CARE TO UNDER SERVED POPULATIONS
MAYBE THROUGH TECHNOLOGY.
IMPROVING HEALTH EQUITY THROUGH
OBJECTIVE IMAGE DATA, ARTIFICIAL
INTELLIGENCE, DATA SHARING,
ACCESSIBILITY BY VISUALLY
IMPAIRED PEOPLE AND
STRENGTHENING OUR DIVISION
WORKFORCE IN SOCIAL DETERMINATES
OF HEALTH AND HEALTH EQUITY AND
HOPING OUR COMMUNITY CAN LEARN
AND IT'S A PRIVILEGE TO SPEAK
HERE AND LOOK FORWARD TO
CHATTING A LITTLE BIT.
>> THANK YOU, MIKE.
THAT WAS REALLY A WELL ORGANIZED
AND THOUGHTFUL -- I THINK I HAD
REMEMBERED WE SHARED A COMMON
PASS IN PITTSBURGH AND ALSO IN
THE BAY AREA.
I'LL COMMENT THAT THE CHALLENGES
OF COMMON DATA ELEMENTS AND DATA
SHARING ARE EFFECTING ALL OF US
CERTAINLY IN RADXUP AND IT
SOUNDS GOOD AND SCIENTIFICALLY
SOUND BUT SCIENTISTS AND
PRINCIPLE INVESTIGATORS ARE HARD
HEADED, LET'S PUT IT THAT WAY,
AND THEY WANT TO DO THINGS THEIR
WAY.
IT IS A COMMON THEME ACROSS THE
AGENCY I THINK WE NEED TO
CONTINUE TO WORK ON.
IT'S A CULTURE CHANGE AND I WAS
PLEASED TO SEE THE KINDS OF
THINGS YOU IDENTIFIED AS COMMON
PROBLEMS AND CERTAINLY MYOPIA,
MY GOD, OF COURSE IF YOU DON'T
GET GLASSES YOU CAN'T READ THE
BOARD OR CAN'T DO ADEQUATE WORK
IN SCHOOL OR DRIVE SAFELY.
CLEARLY ALL THESE ARE IMPORTANT
POINTS.
I'LL OPEN IT UP FOR THE HAPPENED
RAISE FUNCTION IF YOU WANT --
ASK QUESTIONS.
HAND RAISE FUNCTION.
ESTEBAN, PLEASE.
>> THANK YOU, THAT WAS A GREAT
PRESENTATION AND I'M PART OF TOP
MED A MULTI-MILLION DOLLAR
EFFORT TO GET WHOLE GENOME
SEQUENCES AND THE LARGEST
CONTRIBUTORS OF MINORITY
SAMPLES, 33% OF TOP MED ARE MY
SAMPLES.
I THINK THE NIH WILL CLAIM TOP
MED AS A SUCCESS BUT THEY DIDN'T
PROVIDE FUNDING SUPPORT FOR
PEOPLE LIKE ME THAT TORONTO THE
DATA TO ANALYZE THE DATA.
SO THERE'S NO MORE INCENTIVE TO
PARTICIPATE MORE IF WE'RE
UNFUNDED SO I'M GLAD YOU'RE
PROVIDING CARROTS AND STICKS TO
THE INVESTIGATORS CONTRIBUTING
TO ANALYZE AND CONTRIBUTE TO THE
DATA.
WE KNOW THE DATA THE BEST.
WE COLLECTED IT AND CURATED IT
AND QC'D IT AND TO PUT IT ON A
PUBLIC FORUM LIKE DB GAP IT'S
IMPOSSIBLE FOR THE MILLIONS OF
POST-DOCS OUT THERE WHO WANT TO
ANALYZE OUR DATA WITHOUT OUR
INVOLVEMENT.
KUDOS TO YOU GUYS FOR THINKING
FORWARD.
>> ESTEBAN, THANK YOU FOR MAKING
THAT POINT.
BOTH THE POSITIVES AND THE
NEGATIVES OF IT.
MAYBE I SHOULD SAY ESPECIALLY
THE NEGATIVES OF IT.
I'LL GIVE YOU MY OPINION ON THIS
IS THAT I THINK AT THE NIH
OVERALL I DON'T FEEL LIKE WE CAN
WORK IN A VACUUM IN THE SENSE
THAT I THINK WHAT WE STRIVE TO
DO IS MAKE THINGS EASIER FOR
PEOPLE WHO DO THE REAL WORK TO
DO THE WORK.
THAT'S SOMETHING THAT I'LL
REALLY THINK OF BUT I PERSONALLY
HOPE WE CAN COME UP WITH WAYS TO
BEST WORK TOGETHER WITH THOSE
WHO DO THE WORK WE'RE TRYING TO
ADVANCE.
>> I'M AN INTERNIST AND
GERIATRICIAN SO AWARE OF LOTS OF
EYE DISEASE NOT TREATED
DIRECTLY.
I WAS INTERESTED IN THE ISSUE OF
DATA SHARING AND NOT
SURPRISINGLY LACK OF DIVERSITY
WITHIN SOME SINGLE DATA SETS AND
TRYING TO ADDRESS THAT THROUGH
THE LINKAGE OF MULTIPLE DATA
SETS WITH COMMON VARIABLES
POTENTIALLY.
I WAS WONDERING IF YOU
INVESTIGATORS HOW THEY MIGHT OR
HOW YOU THOUGHT ABOUT
INCENTIVIZING EFFORTS TO
INCREASE INCLUSION OF
POPULATIONS THAT EXPERIENCE
HEALTH DISPARITIES RECOGNIZING
SOMETIMES IT MAY BE ABSENT IN
CLINICAL RECORDS DUE TO LACK OF
ACCESS OR RECEIPT OF EYE CARE.
>> IT'S A PROBLEM ALL OF US --
CLEARLY, I DONE THINK ANYONE HAS
FIGURED THIS OUT YET.
ONE OF THE WAYS WE TRIED IS BY
INCENTIVIZING IT THROUGH FUNDING
WITH PROJECTS LIKE AIM AHEAD
WHERE THE GOAL OF THIS IS REALLY
TO THERE'S ONLY ONE GOAL OF AIM
AHEAD WHICH IS TO COLLECT
DIVERSE DATA SETS AND TO TRAIN
DIVERSE INVESTIGATORS.
KNOW, WHAT WE REALLY NEED
SOMETHING SUSTAINABLE.
WHAT WE DON'T WANT TO DO IS FUND
AIM AHEAD EVERY FOUR YEARS.
WE WANT TO HELP THE COMMUNITY DO
THIS ON THEIR OWN AND I THINK
THERE'S A FEW WAYS THAT WE COULD
DO THAT MAYBE IF YOU GET YOUR
PAPER PUBLISHED IN THE FUTURE
YOU HAVE TO DEMONSTRATE THAT YOU
SPAN A WHOLE GROUP OF PEOPLE WHO
ARE GOING TO BE USING THAT
SYSTEM.
I REALLY HOPE THE COMMUNITY CAN
JUST SORT OF THINK ABOUT THAT
ISSUE AND TRY TO COME UP WITH
SOLUTIONS.
AND PEOPLE ARE THINKING ABOUT
THIS BUT I THINK WE NEED TO TAKE
THAT NEXT STEP TO WHAT'S IT
GOING TO LOOK LIKE.
>> THANK YOU, KIMBERLY.
I WOULD ADD THAT THE NEW ENGLAND
JOURNAL DID COME UP WITH A
POLICY I THINK THEY'RE
IMPLEMENTING IS IT HIT YEAR WHEN
YOU SEND THEM A CLINICAL TRIAL
ON A DISEASE THAT
DISPROPORTIONATELY AFFECTED
CERTAIN POPULATIONS AND HAVE TO
JUSTIFY WHY YOUR SAMPLE DID NOT
INCLUDE REPRESENTATIVES FROM
THAT POPULATION AND I SEE A
TOPIC ON DIABETES OR
HYPERTENSION OR WHATEVER AND YOU
LOOK AT THE DIVERSITY OF THEIR
SAMPLE AND IT'S 85%, 90% WHITE.
NOW, EVEN DONE IN EUROPE MAYBE
BUT FINALLY THERE HAVE BEEN SOME
STANDARDS THE JOURNALS ARE GOING
TO ENFORCE AND THAT'S GOING TO
HELP THOUGH IT WON'T BE THE
FINAL.
I'LL TAKE A BRIEF COMMENT FROM
BILL AND WE'LL HAVE TO MOVE ON
WITH THE SCHEDULE.
>> THANK YOU, MIKE.
VERY GOOD PRESENTATION.
I ENJOYED IT A LOT.
I JUST WANT TO GET YOUR
THOUGHTS.
YOU RAISED TWO POINTS I WANT TO
GET YOUR THOUGHTS ON AND THAT IS
HOW VISUAL ABOUT MAKING RECENT
ADVANCEMENTS MORE ACCESSIBLE.
AU LE
YOU ALLUDED TO THAT.
AND CREDIT TO AUTHORS AND HOW
THAT ACADEMIC CREDIT BEING
TRANSLATED TO TENURE COMMITTEES
AT THE VARIOUS INSTITUTIONS FOR
RECOGNITION AND ADVANCEMENT.
I WANT YOUR THOUGHTS ON THAT AND
WHAT YOU THINK.
>> YEAH, BILL, THESE ARE GREAT
QUESTIONS AND I THINK REALLY
IMPORTANT.
THE FIRST THING YOU ASKED WAS
ABOUT ACCESSIBILITY AND THE ONE
AREA WE FOCUSSED ON IS
TECHNOLOGY.
AND THINGS LIKE ARTIFICIAL
INTELLIGENCE AND TELEHEALTH.
THE RATIONALE FOR THIS IS THAT
IF SOMEBODY CAN'T GET IN TO THE
DOCTOR'S OFFICE MAYBE WE CAN
CREATE SOMETHING THAT'S WEB
BASED OR REMOTE OR PARTNER WITH
A LOCAL DRUG STORE FOR THEM TO
BE ABLE TO ACCESS HEALTH CARE
THAT WAY AND IN FACT MAYBE
THERE'LL BE BENEFITS TO NOT ONLY
THE PERSON IN URBAN OR RURAL
AMERICA TO DO THAT BUT MAYBE THE
BANKER ON FIFTH AVENUE WHO
DOESN'T WANT TO TRAVEL I CAN DO
THIS REMOTELY.
THERE MAY BE BENEFITS FOR THIS
IN ALL OF AMERICA AND NOT JUST
THE MEDICALLY UNDER SERVED.
BILL, IN TERMS OF ACADEMIC
CREDIT, I TOTALLY, WHAT I HOPE
IS THAT THE SIMPLE VERSION IS
THAT WE CAN LET SOMEBODY WRITE A
PAPER ABOUT A DATA SET AND THEY
HAVE ANOTHER PAPER ON THEIR C.V.
IF WHAT MOTIVATES INVESTIGATORS
IS PUBLISHING THINGS BUT I THINK
THAT MUCH DEEPER THAN THAT IT'S
MY HOPE WE CAN CHANGE THE
CULTURE WHERE WE ARE
INCENTIVIZING PEOPLE TO SHARE
WHEREAS I THINK RIGHT NOW WE'VE
GOT A SYSTEM TO INCENTIVIZE THEM
NOT TO FAIR BECAUSE IT FAVORS
FIRST OR SECOND AUTHOR AND IF
YOU SHARE DATA WITH ME, I CAN
SCOOP YOU USING YOUR OWN DATA
AND I FEEL LIKE THAT JUST SORT
OF -- MY HOPE IS THAT WE DO
SOMEHOW NEED TO FEED THIS BACK
TO INSTITUTIONAL COMMITTEES
EVENTUALLY TO CHANGE WHAT YOU
VALUE AND I DO HAVE SOME
THOUGHTS ABOUT THAT BUT
ULTIMATELY I THINK IT IT REALIZE
ON US WORKING WITH THE COMMUNITY
TO TRY TO EFFECT CHANGE.
>> THANK YOU.
THANK YOU AGAIN FOR YOUR
QUESTIONS AND MIKE FOR YOUR
WONDERFUL PRESENTATION AND WE'LL
LOOK FORWARD TO ENGAGING ONGOING
ENGAGEMENT WITH NEI.
SO OUR NEXT SPEAKER IS ONE OF
OUR COUNCIL MEMBERS YOU'VE
ALREADY BEEN INTRODUCED,
KEAWE'AMOKU KAHOLOKULA IS
PROFESSOR AND CHAIR OF NATIVE
HAWAIIAN HEALTH AT THE
UNIVERSITY OF HAWAI'I MANOA AND
HAS DONE CLINICAL TRANSLATIONAL
SCIENCE AND LEADS PROJECTS IN
EXPLAINING, PREVENTING AND
TREATING METABOLIC CONDITIONS IN
PACIFIC ISLANDERS AND NATIVE
HAWAIIANS WHICH IS A POPULATION
VERY UNDER STUDIED AND SMALL AND
HAS A HEALTH PROFILE THAT
COMPARES WITH AMERICAN INDIANS
AND ALASKAN NATIVES AND
COMMITTED TO IMPROVING THE
HEALTH OF THESE COMMUNITIES AND
AS A NATIVE HAWAIIAN HIMSELF
PASSIONATE ABOUT IMPROVING THE
HEALTH OF THIS AND MADE A LIFE
LONG COMMITMENT TO IMPROVING THE
DISPARITIES OF HEALTH.
>> MY THOUGHTS AND THE WORK
BEING DONE BY OUR UNIVERSITY AND
WHAT I HOPE TO ACCOMPLISH IS TO
PROVIDE AN OVERVIEW OF THE NHPI
CHANGING DEMOGRAPHICS AND
INDICATORS AND NOINNOVATIONS AND
INTERVENTIONS AND ADVANCES IN
INCLUDING NATIVE HAWAIIANS AND
PACIFIC ISLANDERS.
NATIVE HAWAIIAN AND PACIFIC
ISLANDERS ARE A DISTINCT
CLASSIFICATION AND WE WERE
AGGREGATED WITH ASIAN
POPULATIONS PREVIOUSLY WHICH
DIDN'T SERVE US WELL AND
CONTINUES NOT TO BECAUSE OLD
HABITS ARE HARD TO BREAK BUT WE
ARE A DISTINCT RACIAL ETHNIC
CLASSIFICATION AND THE CENSUS
TELLS US WE HAD A 31% INCREASE
SINCE 2010, 1.6 MILLION DEFINE
THEM RECEIVED AS NATIVE HAWAIIAN
AND/OR PACIFIC ISLANDERS SO MAY
MAKE UP A BIG PART AND WE'RE A
FAST GROWING POPULATION AND THE
RIGHT ON THE FIGURE I HAVE THE
PROJECTED INCREASE FOR NATIVE
HAWAIIANS AND YOU CAN SEE WE'RE
EXPECTED TO DOUBLE IN THE NEXT
FEW DECADES IN OUR POPULATION.
THEY WERE DECIMATED BY
INFECTIOUS DISEASES INTRODUCED
BY MAINLY WESTERN FOREIGNERS
THAT DROPPED OUR POPULATION
DROPPING TO BARELY 40,000 AND
WE'RE ANTICIPATING OUR NUMBERS
GETTING BACK TO WHERE WE WERE
FRIAR WESTERN INTRUSION AND I
EMPHASIZE ARKANSAS BECAUSE
ARKANSAS HAS A LARGE AND GROWING
POPULATION AND ALSO A DEDICATED
GROUP OUT THERE DEDICATED TO
ADDRESSING THEIR HEALTH NEEDS
AND NATIVE HAWAIIAN PACIFIC
ISLANDERS ASPIRE TO CONNECT TO
THEIR PACIFIC ISLAND HOMES
REGARDLESS OF WHERE THEY MAYBE
IN THE UNITED STATES.
THERE'S SIGNIFICANT HEALTH
DISPARITIES NHPI FACED AND TOO
MUCH TO GO THROUGH IN ANY ONE
SINGLE PRESENTATION I'LL
HIGHLIGHT A FEW OF THE KEY
HEALTH INDICATORS ON THE LEFT
WITH THE TABLE TO SHOW COMPARED
TO NON-HISPANIC WHITES THE LEVEL
AND DEGREE OF RISK FOR MAJOR
HEALTH CONDITIONS AND OBESITY
AND HYPERTENSION AND NATIVE
HAWAIIAN, PACIFIC ISLANDERSES
GET A CHRONIC DISEASE 10 YEARS
YOUNGER THAN OTHER ETHNIC GROUPS
AND DIE A WHOLE DECADE SOONER.
OUR LIFE EXPECTANCY IS A DECADE
SOONER THAN OTHER ETHNIC GROUPS.
22% COMPARED TO 10% OF
NON-HISPANIC WHITES AND 22% OF
NHPIs HAVE CHRONIC CONDITIONS.
75% OF NATIVE HAWAIIAN ADULTS
BECAUSE THERE'S NOT RESEARCH
SIMPLY BECAUSE THERE'S MORE
INVESTIGATORS AND FROM THE
NATIVE HAWAIIAN RESEARCH WE SEE
75% OF NATIVE HAWAIIAN ADULTS
REPORT ONE OR MORE ADVERSE
CHILDHOOD EXPERIENCE ON AVERAGE
GREATER THAN OTHER ETHNIC GROUPS
AND HAVE POPULATIONS UNDER
INSURED OR IN INSURE AND 15%
LIVE IN EXTREME POVERTY AND 75%
OF OUR HOUSELESS POPULATION ARE
NATIVE HAWAIIAN, PACIFIC
ISLANDERS AND WE CHARACTERIZE
OUR POPULATIONS BASED ON
COMPARISON TO OTHER ETHNIC
GROUPS AND WE NEED TO ESTABLISH
THE DISPARITIES AND INEQUITIES
BUT THERE'S VALUE TO LEARN ABOUT
AND THOUGH 19% OF NATIVE
HAWAIIAN AT RISK FOR DIABETES,
THE OTHER 20% DO NOT HAVE
DIABETES.
WHAT CAN WE LEARN FROM THAT SUB
POPULATION THAT CAN INFORM
INTERVENTION AND STRATEGIES TO
PROMOTE HEALTH AND WELL BEING IN
OUR COMMUNITIES AND MANY YEARS
AGO I LOOKED AT IN GROUP
DIFFERENCES AND THE RISK FOR
DIABETES AFTER CONTROLLING OR
ACCOUNTING FOR KNOWN RISK
FACTORS WHETHER THEY'RE
DEMOGRAPHIC OR SOCIAL
DEMOGRAPHIC OR BIOLOGICAL RISK
FACTORS.
YOU CAN SEE HERE PRESENTING THIS
W
ONE STUDY THE RISK FOR DIABETES
AND THE ASSOCIATION CALLED
ACCULTERATION STUDIES AND THE
DEGREE OF WHETHER NATIVE
HAWAIIAN AND THE INTEGRATED IS
BICULTU
BICULTURAL AND WE LOW IDENTITY
OR AFFILIATION WITH THE
MAINSTREAM ASSIMILATED AS THE
OPPOSITE OF THAT, HIGH WITH THE
MAINSTREAM AND FOR WHATEVER
REASON ABANDON ORDER NO LONGER
HIGHLY AFFILIATE WITH THEIR
ETHNIC CULTURAL GROUP AND
MARGINALIZED IS LOW ON BOTH.
THIS STUDY HERE WE'RE INTERESTED
IN LOOKING AT WHETHER OR NOT
DIABETES RISK COULD BE SOMEWHAT
EXPLAINED BY DIFFERENCES IN
THEIR ACCULTERATION STRATEGIES
AT THE TIME AND WE FOUND LARGE
DIFFERENCES.
THE OVERALL PREVALENCE OF
DIABETES IN NATIVE HAWAIIANS IS
19.2% BUT WHEN YOU BREAK THEM
DOWN ACROSS THE FOUR GROUPS YOU
SEE VERY LARGE DIFFERENCES IN
THE RISK FOR DIABETES.
THESE ARE CONFIRMED CASES, BY
THE WAY, THEY'RE NOT BASED ON
SELF-REPORT AND ADJUSTED FOR
AGE, EDUCATION.
BMI WAS PRETTY MUCH THE SAME
ACROSS GROUPS.
HAWAIIAN A MIXED GROUP IN
ANCESTRY OF MIXED RACE GIVEN OUR
HISTORY WITH OTHER GROUPS SO WE
ADJUSTED FOR THAT.
BY THE WAY, THERE WAS NO
SIGNIFICANT ASSOCIATION BETWEEN
DEGREE OF HAWAIIAN ANCESTRY AND
THEIR IDENTITY SCORES FOR THEIR
NATIVE SCORES.
WE CONTROLLED FOR TRIGLYCERIDES
AS A MEASURE OF DIET AND INSULIN
AND WE CONTINUE TO SEE A STRONG
ASSOCIATION AND YOU CAN SEE
THOSE MORE EXCLUSIVELY
IDENTIFYING WITH NATIVE HAWAIIAN
HERITAGE HAD ALMOST A 30% HIGHER
PREVALENCE OF DIABETES COMPARED
TO THE INTEGRATED OR THE TWO
LARGEST GROUPS WE CAN MAKE GOOD
SENSE OF INTEGRATE AND
TRADITIONAL.
WHAT IT SUGGESTS IS THIS LARGE
WITHIN GROUP DIFFERENCES AND WE
NEED TO LOOK AT THESE BECAUSE
THEY'RE NOT NECESSARILY RELATED
TO
THEY ARE TIED TO THE SOCIAL AND
CULTURAL DETERMINANTS OF HEALTH.
I WANT TO EMPHASIZE IT'S NOT THE
IDENTITY THAT'S REALLY THE
CAUSAL FACTOR HERE.
IT'S SIMPLY AN ASSOCIATION
BECAUSE AS WE DIVE DEEPER INTO
UNDERSTANDING WHAT IS IT ABOUT
THE ACCULTURATION MODES AND
HAVING EXCLUSIVE STRONG HAWAIIAN
IDENTITIES WE FOUND IT WAS
EXPERIENCED WITH RACISM,
INTERPERSONAL RACISM BEING
REPORTED.
THOSE WITH A STRONGER NATIVE
HAWAIIAN IDENTITY REPORTED
GREATER EXPERIENCE OF
INTERPERSONAL RACISM.
MY POSTDOCS AND PRE-DOCSES
LOOKED AS RACISM, BASICALLY
CONSISTENT WITH WHAT WE'RE
FINDING IN NATIVE HAWAIIANS.
WHAT ARE WE FINDING?
THERE'S A STRONG ASSOCIATION
BETWEEN INTERPERSONAL RACISM AND
LOWER CORTISOL LEVELS.
NEGATIVE ASSOCIATION, THE MORE
RACISM WE'RE SEEING LOWER
CORTISOL PRODUCTION THROUGHOUT
THE DAY, A LOT OF OTHER PEOPLE
CALL THIS HYPERCORTISOLLISM, A
BLUNTED OR FLATTENED, CHRONIC
STRESS CORTISOL GOES UP,
PREPARES THE BODY FOR FIGHT OR
FLIGHT RESPONSE.
WITH CHRONIC STRESSORS MAY BE
SEEING THE OPPOSITE PATTERN IN
NATIVE HAWAIIANS.
THE OTHER THING IS RACISM IS
ASSOCIATED WITH RISK FOR
HYPERTENSION, HIGH BLOOD
PRESSURE, SIMILAR TO WHAT WE SEE
IN OTHER ETHNIC GROUPS ACROSS
THE U.S.
ALSO A RISK FACTOR FOR OBESITY,
AND GREATER PSYCHOLOGICAL
DISTRESS.
ONE OF MY MENTEES, WHEN SHE WAS
A GRADUATE, DOCTORAL STUDENT,
DID A DISSERTATION LOOKING AT
CARDIOVASCULAR ACTIVITY AND
RECOVERY IN RESPONSE TO RACIAL
STRESSORS, FOUND EARLY
INTERESTING RESULTS.
SHE FOUND GREATER CARDIOVASCULAR
ACTIVITY, INCOMPLETE RECOVERY,
CONSISTENT WITH OTHER
POPULATIONS.
IT WAS THE SUBTLE RACIAL
STRESSOR, MORE AMBIVALENT
STRESSOR, THAT WAS CONCERNING
AND PROBLEMATIC OVER THE BLATANT
STRESSOR.
SHE DID A NUMBER OF SOCIAL
PSYCHOLOGY STRATEGIES TO ENSURE,
SHE ALSO DID A NEUTRAL STIMULI
THAT SHE INCLUDED.
SHE DID EXPERIMENTAL STUDY.
WITHOUT GOING INTO IT, WE'RE
FINDING THE SUBTLE RACISM PUTS A
GREATER STRESS ON PARTICIPANTS.
IF YOU CAN'T MAKE SENSE OF
SOMETHING, YOU SPEND MORE
COGNITIVE AND EMOTIONAL ENERGY
TRYING TO FIGURE IT OUT, MORE
FRUSTRATION.
PERHAPS WHEN SOMETHING IS
BLATANT, YOU CAN BETTER DEAL
WITH IT PERHAPS, IF YOU
EXPERIENCE -- IF IT'S CLEAR
RACIST INTERACTION, YOU CAN
AVOID THAT SETTING IN THE
FUTURE, IF YOU CAN, PERHAPS WITH
SUBTLE, IT JUST WEIGHS ON YOU.
THE OTHER THING WE'RE FINDING
THIS TREMENDOUS HISTORICAL
DISTRUST TOWARDS WESTERN
INSTITUTIONS TO INCLUDE MEDICINE
AND TRUST BECAUSE OF HISTORIC
TRANSGRESSIONS HAS BEEN
EXACERBATED DURING THE COVID-19
PANDEMIC SEEING RESISTANCE AMONG
NATIVE HAWAIIAN P.I.s TO THE
VACCINE, BEING VACCINATED, THE
TREMENDOUS MISTRUST TOWARDS
GOVERNMENT.
WE'RE STARTING TO SEE IN
RESEARCH COMING OUT WITH PACIFIC
ISLANDERS FROM THE MICRONESIA
REGION, ONE OF THE FASTEST
GROWING GROUPS IN THE UNITED
STATES, WHICH WE'RE SEEING
SIMILAR ISSUES IN REGARDS TO
OPPRESSION AND RACIAL
DISCRIMINATION.
TO CLOSE OFF THIS SECTION OF MY
TALK HIGHLIGHTING KEY
DETERMINANTS OF HEALTH.
THESE ARE THE BIG ONES THAT
THROUGH ALL OF OUR FOCUS GROUPS
AND STUDIES OVER THE YEARS
COMING OUT AS KEY FACTORS AT
THIS DIFFERENT LEVEL OVER THE
LIFESPAN AFFECTING THE HEALTH,
GOOD OR BAD, THE HEALTH OF
NATIVE HAWAIIANS AND PACIFIC
ISLANDERS.
THE KEY ONES ARE HISTORICAL
TRAUMA.
LIKE AMERICAN INDIANS/ALASKA
NATIVES, A CONCERNING HISTORY
THAT LED TO SIGNIFICANT
DISADVANTAGE AND LOSS OF OUR
GOVERNMENT AND OUR KINGDOM.
THERE'S A SELF-DETERMINATION
BECAUSE OF THAT THAT IS STILL
SOUGHT BY NATIVE HAWAIIANS
SIMILAR TO NATIVE AMERICANS.
THEY ARE REVITALIZING CULTURAL
PRACTICES ONCE EITHER OUTLAWED
FOR LEGISLATIVE ACTIONS OR
DISMISSED, REGAINED AND
LEVERAGING THAT FOR HEALTH
PROMOTION.
WE CONTINUE TO EXPERIENCE HIGH
LEVELS OF DISCRIMINATION EVEN
HERE IN HAWAII WHERE THERE'S THE
PERCEPTION OF US BEING AN ETHNIC
PARADISE BECAUSE WE'RE SO
DIVERSE.
THERE'S STILL DISCRIMINATION AND
RACISM.
OUR PEOPLE LIVE IN OBESOGENIC
ENVIRONMENTS WITH LESS
OPPORTUNITY FOR PHYSICAL
ACTIVITY, MORE FAST FOOD
ESTABLISHMENTS, AND ISSUES,
ACCESS ISSUES TO FRESH FRUITS
AND VEGETABLES AND LIVE IN MORE
TOXIC ENVIRONMENTS WITH
INDUSTRIES AND COMPANIES THAT
ARE OPERATING IN THESE AREAS
THAT PRODUCE TOXINS INTO THE
ENVIRONMENTS, AS WELL AS
OVERCROWDED ENVIRONMENTS.
FOOD INSECURITY CONTINUES TO BE
A MAJOR ISSUE FOR NATIVE
HAWAIIAN/PACIFIC ISLANDERS,
WE'RE THE GROUP WITH THE
GREATEST FUTURE INSECURITY, LACK
OF LIVABLE WAGES, INADEQUATE
EDUCATIONAL OPPORTUNITIES, LOW
HEALTH CARE ACCESS, SO FORTH.
THERE'S A LOT OF GREAT NEWS, ONE
IS OUR POPULATIONS ARE
INCREASING AND GETTING BACK TO
WHAT WE SAW PRIOR TO
INTRODUCTION TO THE WESTERN
WORLD.
BUT OUR GROUPS CONTINUE TO
MAINTAIN, AS I POINTED OUT
EARLIER, STRONG CULTURAL VALUES
AND PRACTICES, MAINLY CENTERING
AROUND FAMILY AND COMMUNITY
COHESION, INTERDEPENDENCE.
THERE'S A STRONG ANCESTRAL
FIDELITY, LOOKING BACK TO THE
LESSONS AND TEACHINGS OF OUR
ANCESTORS AND HOW DO WE APPLY
THEM TODAY.
THERE'S STRONG DESIRE TO
MAINTAIN HARMONY WITHIN OUR
COMMUNITIES, WITHIN OUR
FAMILIES, ALSO WITH NATURE AND
OTHER SURROUNDING.
THERE'S A STRONG SPIRITUAL AND
RELIGIOUS CONVICTION THAT
CONTINUES TO THIS DAY FOR NATIVE
HAWAIIAN AND PACIFIC ISLANDERS.
AGAIN, AS I POINTED OUT,
ASPIRATION TO MAINTAIN THESE
CULTURAL CONNECTIONS.
THE IDEA IS HOW CAN WE TAKE --
LEVERAGE THE STRENGTHS OF THE
NATIVE HAWAIIAN AND PACIFIC
ISLANDERS TO ADDRESS THE MOST
PRESSING HEALTH CONCERNS?
SO FOR ME BEGINNING WHEN I FIRST
STARTED AS ASSISTANT PROFESSOR
AT THE MEDICAL SCHOOL IN THE
EARLY 2000s, THERE WAS AN
OPPORTUNITY FOR US TO GET
INVOLVED WITH NIMHD PROGRAM
UNDER DR. RUFFIN, 11 YEARS OF
FUNDING ESSENTIALLY TO BUILD A
CBPR PARTNERSHIP AND ADDRESS A
MAJOR CONCERN FROM THE
COMMUNITIES.
SO WE WERE FORTUNATE TO TAKE
ADVANTAGE OF THAT.
IT WAS CALLED THE P E LA OHANA,
IT MEANS FAMILIES AND
COMMUNITIES JOINING TOGETHER,
PILI OHANA, PARTNERSHIPS TO
IMPROVE LIFESTYLE INTERVENTIONS,
11 YEARS OF PARTNERSHIP, THREE
YEARS OF PLANNING, FIVE YEARS OF
INTERVENTION, THREE YEARS TO
DISSEMINATE.
OVER THE COURSE OF THE 11 YEARS
SUPPORTED BY WHAT WAS THE
NATIONAL CENTER OF MINORITY
HEALTH AND HEALTH DISPARITIES,
DURING THIS COURSE OF TIME
BECAME AN INSTITUTE.
WE WERE ABLE TO DEVELOP THREE
CULTURAL INFORMED INTERVENTIONS
TO ADDRESS OBESITY AND
OBESITY-RELATED INEQUITIES IN
OUR COMMUNITIES, WITH THE STRONG
PARTICIPATION AS YOU CAN SEE BY
LEADERS FROM FIVE DIFFERENT
NATIVE HAWAIIAN AND PACIFIC
ISLANDER COMMUNITIES.
WE WERE ABLE TO ADAPT THE
LIFESTYLE PROGRAM FOR NATIVE
HAWAIIANS AND PACIFIC ISLANDERS.
AND MODIFY IT FROM A 16 -- I
BELIEVE 16 LESSONS TO 8 LESSONS
DELIVERED OVER THREE MONTHS.
WE DEVELOPED A NOVEL FAMILY AND
COMMUNITY FOCUSED WEIGHT LOSS
MAINTENANCE INTERVENTION,
COMBINED WITH ADAPTED DPPP PILI
LIFESTYLE PROGRAM.
WHAT WE LEARNED FROM TALKING
WITH OUR COMMUNITIES AND
RESEARCH THE HARDEST THING
ABOUT, YOU KNOW, WEIGHT LOSS IS
DIFFICULT.
IT'S EVEN MORE DIFFICULT FOR
PEOPLE TO MAINTAIN THAT WEIGHT
LOSS OVER TIME.
AND OUR COMMUNITIES FELT
STRONGLY THE WAY TO HELP OUR
COMMUNITIES TO MAINTAIN THEIR
WEIGHT LOSS AND CONTINUE THEIR
WEIGHT LOSS SUCCESS IS TO REALLY
ENGAGE THE FAMILIES AND
COMMUNITY RESOURCES IN A
MEANINGFUL WAY.
SO WE DESIGNED A NOVEL
INTERVENTION AROUND THAT TO BE
INCLUDED.
THE OTHER THING WE DID WAS ADAPT
PARTNERS AND CARE FOUND
EFFECTIVE WITH AFRICAN AMERICANS
AND NATIVE AMERICAN COMMUNITIES
FOR NATIVE HAWAIIANS AND PACIFIC
ISLANDERS, AND WE ALSO CREATED A
WORK SITE LIFESTYLE PROGRAM
BASED ON THE PILI LIFESTYLE
PROGRAM AND WORKED WITH FIVE
COMMUNITY PARTNERS.
BY THE END OF THE 11 YEARS WE
DISSEMINATED RESEARCH TO 30
ORGANIZATIONS, OUTSIDE OF
HAWAII, MAINLY CALIFORNIA.
LESSONS LEARNED AND KEY FINDINGS
FROM A FEW STUDIES, I WON'T
FOCUS ON ALL FOR THE SAKE OF
TIME, BUT JUST TO HIGHLIGHT WHAT
I THINK IS THE IMPORTANCE OF
ENGAGING OUR COMMUNITIES IN THIS
PROCESS, BUT ALSO WHAT WE'VE
LEARNED THAT CAN REALLY ADVANCE
THE SCIENCE IN THIS AREA TO
IMPROVE IN OUR ABILITY TO
ADDRESS OBESITY DISPARITIES IN
NATIVE COMMUNITIES.
AS I MENTIONED EARLIER
CULTURALLY ADAPTED THE PROGRAM,
MODIFIED INTO THE EIGHT LESSONS
OVER THREE MONTHS, AND THIS WAS
ACTUALLY STRONGLY ENCOURAGED BY
OUR COMMUNITY PARTNERS THAT IT
BE CONDENSED AND WE FOCUS ON THE
FAMILY AND COMMUNITY PIECE.
TO GIVE A BRIEF -- WE'VE DONE
MANY STUDIES OVER TIME.
THIS IS A STUDY OF SUMMARY OR
AVERAGE, ACHIEVING MODEST WEIGHT
LOSS IN ONLY THREE MONTHS, 1.5
KILL KILOGRAMS WEIGHT LOSS,
MODEST NEVERTHELESS.
SIGNIFICANT IMPROVEMENT IN BLOOD
PRESSURE IN THREE MONTHS.
WE ALSO SEE SIGNIFICANT
IMPROVEMENTS WITH WALK TEST AND
PHYSICAL FUNCTIONING.
WE'RE STARTING TO SEE WHAT
PREDICTS A LOT OF WEIGHT LOSS,
WE LOOKED AT NUMBER OF
PSYCHOSOCIAL FACTORS, ONE OF THE
STRONGEST ONES WE'RE FINDING IS
INTERNALIZED LOCUS OF WEIGHT
LOSS IS MUCH -- SEEMS TO BE THE
THING THAT BETTER PREDICTS
WEIGHT LOSS IN OUR COMMUNITIES,
AT LEAST FOR THE FIRST THREE
MONTHS.
WHEN WE COMBINE THIS WITH THE
FAMILY AND COMMUNITY, THIS IS
WHERE THE TRIAL ASPECT OF OUR
STUDY WAS CONDUCTED, A FEW OF
OUR STUDIES, WE DELIVERED THE
FIRST THREE MONTHS TO ALL
PARTICIPANTS BECAUSE THAT WAS
THE REQUEST OF OUR COMMUNITIES
THAT NONE OF OUR PARTICIPANTS GO
WITHOUT AN INTERVENTION BUT WE
WERE INTERESTED IN THE WEIGHT
LOSS MAINTENANCE ASPECT.
SO WE RANDOMIZED THEMED IN THIS
STUDY TO ONE OF TWO CONDITIONS.
ONE TO RECEIVE THE FAMILY AND
COMMUNITY INTERVENTION.
THE OTHER WAS WHAT WE CALLED A
STANDARD BEHAVIORAL
INTERVENTION, REALLY A FREQUENT
PHONE CALL TO FOLLOW UP WITH THE
PARTICIPANTS, GO OVER THEIR
ACTION PLAN, SO FORTH, TO KEEP
THEM ON TRACK, MINIMAL CONTACT
AND INTERVENTION.
WE FOUND SIGNIFICANT -- GREATER
IMPROVEMENTS, SO 51% OF THOSE
WHO PARTICIPATED IN THE PILI
PROGRAM ACHIEVED -- WE SET A
MODEST WEIGHT LOSS GOAL OF 3%,
PERHAPS THE LOWEST WEIGHT LOSS
THAT PROVEN CLINICAL BENEFITS IN
PAST STUDIES, COMPARED TO ONLY
31.4% OF THE CONTROL GROUP.
AGAIN, THIS CONTROL DID RECEIVE
AN INTERVENTION THE FIRST THREE
MONTHS, DPP, DID RECEIVE SOME
ATTENTION AND CONTACT FROM OUR
STAFF, OUR COMMUNITY FOLKS.
AND WHAT WE SAW WAS EVEN GREATER
IMPROVEMENTS THAN BLOOD
PRESSURE.
MODEST IMPROVMENTS IN BLOOD
PRESSURE IN THE FIRST THREE
MONTHS BUT CONTINUING ON IN
THEIR INTERVENTION OVER THE
COURSE OF NINE MONTHS HERE, LED
TO VERY LARGE IMPROVEMENTS IN
BLOOD PRESSURE, SYSTOLIC AND
DIASTOLIC.
WHAT WE LEARNED, WE'VE
REPLICATED THIS IN OTHER STUDIES
WE'VE DONE, EVEN IN THE LARGER
DATASET, OF 315 NATIVE HAWAIIAN
AND PACIFIC ISLANDERS.
WHAT WE'RE FINDING THE FIRST
THREE MONTHS OF WEIGHT LOSS,
GREATER WEIGHT LOSS IN THE FIRST
THREE MONTHS PREDICT LONG-TERM
WEIGHT LOSS OUT TO 18 MONTHS,
SIMILAR TO OTHER STUDIES.
THE MORE YOU LOSE UP FRONT SEEMS
TO PREDICT LONGER TERM WEIGHT
LOSS AND WEIGHT LOSS MONTHS.
WE'RE FINDING ONE SIZE DOES NOT
FIT ALL, THE EFFECTS OF
INTERVENTION SEEMS TO BE
STRONGER FOR CERTAIN PACIFIC
ISLANDER GROUPS OVER OTHERS, IN
THIS CAUSE A GROUP FROM THE
MICRONESIA REGION OF THE PACIFIC
RESPONDED WELL TO OUR
INTERVENTION, GREATER WEIGHT
LOSS OVER TIME, MORE LIKELY THAN
OTHER NATIVE HAWAIIANS AND
PACIFIC ISLANDERS, AND A DOSE
EFFECT FOR THOSE WHO ARE
PARTICIPATING, ATTENDED ALL
LESSONS, MORE LIKELY TO GET MORE
BENEFIT FROM OUR INTERVENTION
THAN THOSE THAT DID NOT.
WHAT I WANT TO DO IS TURN OUR
ATTENTION -- THAT WAS A
CULTURALLY ADAPTED INTERVENTION
I WAS SHARING THAT OUR
COMMUNITIES FELT STRONGLY WE
NEEDED TO DO.
AND AFTER GOING THROUGH THE PILI
EXPERIENCE WE REALLY LEARNED
THAT PERHAPS WE NEED DIFFERENT
STRATEGIES OTHER THAN MAINSTREAM
STRATEGIES RATHER THAN ADAPTING
ADAPTING PROGRAMS FROM OTHER
POPULATIONS NEEDED TO LOOK AT
OUR CULTURAL PRACTICES TO SEE
WHETHER OR NOT WE CAN LEVERAGE
FOR HEALTH PROMOTION.
I GOT TO ADMIT ABOUT 11 YEARS
AGO WHEN ONE OF MY FACULTY
APPROACHED ME, THERE ON THE
RIGHT IN THE PICTURE IN THE
MIDDLE IN THE PINK, AND SAID,
LET'S LOOK AT HULA TO LEVERAGE
FOR HEALTH PROMOTION, AND GET AN
NIH GRANT TO DO IT, I WAS
SKEPTICAL BECAUSE I DIDN'T AT
THE TIME QUITE UNDERSTAND THE
MECHANISM AND HOW THAT LOOKED
CONCEPTUALLY.
WE REALLY TOOK IT A STEP AT A
TIME AND WITH FUNDING FROM NIMHD
THROUGH A PILOT PROGRAM HERE
THROUGH OUR RCMI PROGRAM WE'RE
ABLE TO BEGIN THE PROCESS OF
ENGAGING THE PACIFIC
ISLAND/NATIVE HAWAIIAN
COMMUNITY.
WE FELT STRONGLY IT WOULD HAVE
RELEVANCE FOR OTHER PACIFIC
ISLANDERS BECAUSE OF SIMILAR
PACIFIC CULTURAL VALUES AND
PRACTICES AND BEGAN THIS PROCESS
OF DEVELOPING THAT TOOK US
PERHAPS TEN YEARS SIMILAR TO
PILI TO GET TO A POINT WE FOUND
EFFICACIOUS INTERVENTION, IN
THIS CASE CYBER TENSION.
OLA HOU I KA HULA, TRANSLATES
RESTORING LIFE THROUGH HULA.
ASIDE FROM MEETING EXTENSIVELY
WITH THE HULA EXPERTS, KEEPERS
OF THIS TRADITION THROUGHOUT
HAWAII, TO GET THEIR THOUGHTS,
ALSO THEIR BLESSINGS, IF YOU
WILL, TO BE ABLE TO DO THIS AND
USE HULA WHILE MAINTAINING THE
CULTURAL INTEGRITY OF HULA BEING
ABLE TO APPLY IN A SCIENTIFIC
STUDY AND ABLE TO WORK CLOSELY
WITH OUR COMMUNITIES IN DOING
THAT AND THEY REALLY CONTRIBUTED
TO THE DESIGN OF OUR
INTERVENTION.
ONE OF THE OTHER THINGS WE'RE
ABLE TO DO IS ESTABLISH THE
PHYSICAL -- THE BENEFITS OF HULA
PHYSICALLY, AND WHETHER OR NOT
IT COULD MEET NATIONAL STANDARDS
AS A PHYSICAL -- AS A VALID
PHYSICAL ACTIVITY FOR HEALTH
PROMOTION SO WE CONDUCTED A MET
STUDY TO LOOK AT HULA.
YOU SEE THE RESULTS,
HIGHLIGHTING WE WERE SURPRISED,
WE KNEW HULA WOULD HELP,
PHYSICALLY ACTIVE.
DIDN'T KNOW THE EXTENT HOW
INTENSE IT WOULD BE ON.
ON AVERAGE TO THE LEVEL OF THE
PICKUP BASKETBALL GAME IN THE
EXERCISE BENEFITS, HIGHEST
INTENSITY SIMILAR TO BASKETBALL,
LOWEST SIMILAR TO BALLROOM
DANCING, SECOND TIME INDIGENOUS
PRACTICE WAS STUDIED THIS WAY
AND HOPEFULLY WILL GET INTO THE
COMPENDIUM OF PHYSICAL
ACTIVITIES IN THE FUTURE.
WHAT WE DID WAS THROUGH ALL THIS
PROCESS WE DEVELOPED A
THREE-MONTH INTERVENTION USING
HULA LEVERAGING HULA AND HULA
LESSONS TO SEE WHETHER OR NOT WE
COULD HAVE IMPACT ON PEOPLE WITH
HYPERTENSION, NATIVE HAWAIIANS
WITH UNCONTROLLED HYPERTENSION.
WELL ACTUALLY NATIVE HAWAIIAN
AND PACIFIC ISLANDERS.
WE DESIGNED AND INTERVENTION
THAT FIRST ONE WOULD COVER BRIEF
IMPORTANT HYPERTENSION
SELF-MANAGEMENT LESSONS, VERY
BRIEF.
THIS WAS THREE LESSONS DELIVERED
ONE HOUR EACH, DURING THE FIRST
WEEK OF THE INTERVENTION.
IT COVERED THE IMPORTANCE OF
SODIUM REDUCTION, UNDERSTANDING
YOUR MEDICATION, COMMUNICATING
EFFECTIVELY WITH YOUR PHYSICIAN
AROUND THAT AND SO FORTH, STRESS
MANAGEMENT.
YOUR BASIC HEART HEALTH
EDUCATION.
AND THEN THEY RECEIVED -- I'M
JUST GOING OVER THE FIRST THREE
MONTHS AND SHOW A PILOT TRIAL
THAT WAS FUNDED BY NIMHD IN
WHICH WE DESIGNED THE
THREE-MONTH INTERVENTION SO
THAT -- YOU CAN SEE ON THE RIGHT
ON THE TABLE WE HAD A WARMUP
CONDITION AND COOLDOWN PHASE TO
GET PEOPLE'S HEART RATE UP,
WORKING HEART RATE, GET THE
BENEFITS OF PHYSICAL ACTIVITY
BENEFITS AND CONFIRM THAT.
WE WERE OF WE PARTNERED WITH
EXPERT, A HULA MASTER, ABLE TO
STANDARDIZE OUR PROTOCOLS FOR
THE RESEARCH SO WE COULD TEST IN
A TRIAL.
AND WE DID A PILOT TRIAL HERE.
SO YOU CAN SEE WE RANDOMIZED
NATIVE HAWAIIAN AND PACIFIC
ISLANDERS FROM TWO COMMUNITY
GROUPS, ONE WAS A COMMUNITY
HEALTH CENTER, THE OTHER WAS A
GRASSROOTS COMMUNITY.
AND WITHIN EACH COMMUNITY SITE
WE RANDOMIZED THE PARTICIPANTS
EITHER INTO RECEIVING
THREE-MONTH HULA INTERVENTION OR
CONTROL.
OUR INTENT WAS NOT TO FIND
STATISTICALLY SIGNIFICANT
RESULTS.
OUR INTENT WAS TO FIND A TREND
AND HAVE PRELIMINARY DATA FOR AN
R01 IN THE FUTURE.
AND TO JUST ESTABLISH PERHAPS
THAT HULA COULD BE LEVERAGED FOR
HEALTH PROMOTION.
AND ALL OF OUR PARTICIPANTS FOR
THIS PARTICULAR PILOT HAD
UNCONTROLLED HYPERTENSION,
MEANING SYSTOLIC BLOOD PRESSURE
IS 140 OR GREATER, AND CONFIRMED
HYPERTENSION BY A PHYSICIAN,
NEED TO BE UNDER A PHYSICIAN'S
CARE, THESE ARE ADULT NATIVE
HAWAIIANS, INCLUDING NATIVE
HAWAIIANS AND PACIFIC ISLANDERS,
CHUKIS FROM THE PACIFIC ISLAND
GROUP.
WE FOUND SIGNIFICANT REDUCTION
IN SYSTOLIC BLOOD PRESSURE IN
THREE MONTHS FOR THOSE THAT
UNDERWENT THE HULA INTERVENTION
VERSUS CONTROL.
YOU CAN SEE THE RESULTS HERE.
WE HAD BASICALLY 20 DROPS IN
THEIR SYSTOLIC BLOOD PRESSURE,
COMPARED TO NINE.
FOR SOME REASON THE CONTROL HAD
A SIGNIFICANT -- A BIG DROP AS
WELL.
WE THINK SOMETHING'S GOING ON,
IT'S A WEIGHTLESS CONTROL SO WE
THINK IT'S HAVING AN EFFECT
PREPARING THEM FOR THE
INTERVENTION PERHAPS.
72% OF THE INTERVENTION GROUP
VERSUS 39 HAD DROPPED MORE THAN
10, 10 LEVELS IN THEIR SYSTOLIC
BLOOD PRESSURES, AND THAT WAS
SIGNIFICANT.
AND THIS IS A VERY SMALL SAMPLE.
WE ALSO LEARNED FROM THIS STUDY
THAT, ONE, THE IMPROVEMENTS IN
BLOOD PRESSURE WAS ASSOCIATED
WITH IMPROVEMENTS IN SOCIAL
FUNCTIONING, WHICH IS ONE OF THE
ASPECTS THAT WE THINK IS
BENEFICIAL OF THE HULA
INTERVENTION DELIVERED IN A
GROUP SETTING.
IT'S A CULTURAL-BASED
INTERVENTION EMPHASIZING THE
INTERCONNECTEDNESS BETWEEN
PARTICIPANTS AND NATURE, AS A
HULA GROUP USUALLY DOES.
WE ALSO SAW OF COURSE DECREASES
IN BODILY PAIN WAS ASSOCIATED
WITH IMPROVEMENTS IN BLOOD
PRESSURE.
BUT THE INTERESTING THING, AS
YOU KNOW I'M A RESEARCHER
INTERESTED IN RACISM, EFFECTS ON
HEALTH, WE LOOKED AT THE EFFECTS
OF THE CHANGES AND THEIR
PERCEPTIONS OF RACISM, WITHIN
THE COURSE OF THE THREE MONTHS
THAT THEY WERE PARTICIPATING.
WE FOUND THE HULA GROUP
SIGNIFICANTLY DECREASED THEIR
PERCEPTIONS OF RACISM AROUND
THEM AS A RESULT INTERVENTION
WITH A CONTROL HAD NO CHANGE.
STATISTICALLY SIGNIFICANT
DIFFERENCE BETWEEN GROUPS.
SO THE IDEA HERE WAS, YOU KNOW,
TRADITIONAL HYPERTENSION
EDUCATION PROGRAMS PERHAPS LIKE
DASH DIET AND OTHERS,
TRADITIONAL WESTERN-BASED
APPROACHES CAN GET GREAT
CLINICAL OUTCOME BUT WE'RE
SEEING GREAT SOCIAL AND CLINICAL
OUTCOMES FROM CULTURALLY BASED
INTERVENTION, MORE THAN
PROMISING, WE DIDN'T EXPECT TO
FIND SIGNIFICANTLY STATISTICAL
DIFFERENCES.
I FORGOT TO MENTION WE FOLLOWED
THE HULA GROUP OVER SIX MONTHS
AND GOT THEIR BLOOD PRESSURES AT
SIX MONTHS, THREE MONTHS WITHOUT
OUR INTERVENTION.
UNFORTUNATELY WHAT WE FOUND WAS
RETURN TO BASELINE THAT MANY OF
THEM WERE STARTING TO GET THEIR
BLOOD PRESSURES BACK UP TO WHAT
IT WAS AT THE START OF OUR
INTERVENTION WHICH WAS
CONCERNING.
SO ONE OF THE THINGS WE DID WAS,
YOU KNOW, WE NEEDED TO
DEVELOP -- NEEDED TO EXPAND AND
ENHANCE OUR INTERVENTION SO THAT
WE CAN MAKE THE LESSONS THAT
THEY LEARNED FROM THE HULA
INTERVENTIONS PART OF THEIR
LIVES.
SO WE ADDED ADDITIONAL THREE
MONTHS FOR THE MAINTENANCE PIECE
TO OUR INTERVENTION, WHICH MEANS
BY DOING, ONE LEARNS.
IT WAS REALLY INFORMED BY A
SELF-REGULATION THEORY TO HELP
SUSTAIN THESE BEHAVIOR CHANGES,
APPLYING TO DAILY LIVES AND
PRACTICING THIS OVER THE COURSE
OF THE REMAINING THREE MONTHS.
WE WERE FORTUNATE TO GET FUNDING
FROM THE NATIONAL HEART, LUNG
AND BLOOD INSTITUTE TO DO A MORE
DEFINITIVE STUDY USING HULA, AS
I'M SHARING HERE WITH YOU, IS
THE TRIAL ITSELF, THE FLOW OF
THE TRIAL OVER TIME.
I WON'T SPEND TIME HERE OTHER
THAN TO SAY CRITERIA WAS SIMILAR
TO PILOT WITH THE EXCEPTION THAT
THE PARTICIPANTS HAVING
UNCONTROLLED HYPERTENSION AT
BASELINE ALSO NEEDED TO NOT HAVE
HEART DISEASE OR STROKE OR ANY
CARDIOVASCULAR DISEASE BECAUSE
WE WERE TRYING TO PREVENT OR
REDUCE TEN YEAR RISK FOR HEART
DISEASE.
I WANT TO GET THROUGH OTHER
THINGS, I'M GOING TO JUMP TO THE
RESULTS.
SIMILAR TO OUR PILOT WE FOUND
AGAIN A WEIGHTLESS CONTROL,
EXPANDED TO SIX MONTHS, FOLLOWED
INTERVENTION GROUP TO 12 MONTHS.
WE FOUND SIGNIFICANT REDUCTIONS
DIFFERENCE BETWEEN OUR HULA
GROUP, PARTICIPANTS WHO RECEIVED
HULA INTERVENTION VERSUS
EDUCATION ONLY.
WHAT'S DIFFERENT FROM THE PILOT,
THIS TIME IN THE -- WE GAVE
EVERYONE THE BRIEF HEART
EDUCATION LESSONS.
SO IN A WAY, THE CONTROL WASN'T
TRULY A CONTROL.
THEY GOT -- THEY ARE ALL UNDER
PHYSICIAN CARE, CONTINUED TO BE
UNDER PHYSICIAN CARE DURING OUR
TRIAL.
BUT THEY GOT THE EDUCATION, THEY
GOT ONLY THE FIRST FOUR LESSONS
DELIVERED OVER THE FIRST WEEK,
BEFORE BEING RANDOMIZED OR
ASSIGNED, GOING INTO THEIR STUDY
ARMS.
AND WHAT YOU CAN SEE IS ABOVE
AND BEYOND THIS BASIC HEART
EDUCATION.
WE GOT SIGNIFICANT REDUCTION IN
SYSTOLIC AND DIASTOLIC BLOOD
PRESSURE, BY THE WAY, I'M
SHOWING SYSTOLIC, THIS IS THE
CRITERIA PRIOR TO CHANGE IN 2017
FOR UNCONTROLLED HYPERTENSION SO
WE'RE ANALYZING DATA BASED ON
THE CRITERIA USING -- AT THE
TIME WE STARTED TRIAL, ALL STAGE
2 ON AVERAGE TO BE ELIGIBLE.
THERE WAS SOME VARIATIONS BUT
THEY ALL DROPPED -- THE
INTERVENTION GROUP DROPPED TWO
STAGES TO ELEVATED, MAINTAINED
OVER TIME, AS YOU CAN SEE THE
CONTROL GROUP DIDN'T.
FAR RIGHT I THINK SPEAKS TO
CLINICAL PERHAPS SIGNIFICANCE OF
OUR INTERVENTION IN WHICH THE
NUMBER -- PROPORTION OF
PARTICIPANTS IN THE HULA GROUP
ABLE TO DROP BELOW 130/80 WAS
43% COMPARED TO 21% OF THE
CONTROL GROUP.
WHAT I'M NOT SHOWING HERE IS WE
ALSO LOOKED AT FRAMINGHAM RISK
SCORES TO DECREASE TEN YEARS,
USING FRAMINGHAM CALCULATOR.
THOSE WHO RECEIVED THE HULA,
THEIR RISK WAS DROPPED TWO
TIMES -- TWO TIMES GREATER
REDUCTION IN TEN-YEAR RISK THAN
THE CONTROL GROUP, PUBLISHED
RECENTLY IN THE ANNALS OF
BEHAVIORAL MEDICINE.
I WANT TO HIGHLIGHT EMPHASIZING
BENEFITS OF COMMUNITY-BRACED
PARTICIPATORY RESEARCH AND
CAPACITY BUILT IN THE
COMMUNITIES.
I KNOW IT'S OFTEN CRITICIZED,
CBPR IS CRITICIZED REGARDING
TRUE CONTRIBUTION TO SCIENCE,
TAKES TOO LONG, OTHER THINGS.
BENEFITS ARE TREMENDOUS TO OUR
COMMUNITIES.
AND SO FORTH.
I WANT TO HIGHLIGHT HERE ONE OF
OUR COMMUNITY PARTNERS, AMONG
MANY, ON THE RIGHT IS THE
NETWORK, THE COMMUNITIES ENGAGED
OVER THE YEARS, CONDUCTED
RESEARCH WITH, SOME WAYS OR TO
SOME DEGREE, BUT ONE OF THEM IS
THIS NON-PROFIT THAT SERVES
NATIVE HAWAIIAN COMMUNITIES AND
AS A RESULT OF THE CBPR CAPACITY
BUILDING, CAPACITY BUILDING
BECAUSE OF THE CBPR PROJECT OVER
11 YEARS THEY HAVE BEEN ABLE TO
LEVERAGE AND LESSONS LEARNED TO
SECURE FUNDING OVER $10 MILLION
FOR THEIR COMMUNITIES, SO FORTH.
YOU CAN SEE THAT.
I'LL END WITH -- I'M RUNNING OUT
OF TIME, A LITTLE BEHIND.
WE'RE PARTICIPATING IN THE
HEALTH DISPARITIES TRAINING
PROGRAM, I'M TURNING MY
ATTENTION TO THE WORKFORCE
DIVERSITY INITIATIVES, AND
FUNDED THROUGH NIMH.
WE HAVE GREAT SUCCESS WITH THIS.
WE WERE PART OF THE FIRST ROUND
OF THE INTERNATIONAL PIECE, WITH
KARINA WALTERS, WE'RE ABLE OVER
THE FIVE YEARS TO GET 16 NATIVE
HAWAIIAN AND PACIFIC ISLANDERS
TO PARTICIPATE.
YOU CAN SEE THE NUMBERS HERE.
WHAT I'LL SAY ABOUT THIS THE
MAJORITY HAVE GONE ON TO
MASTER'S DEGREE, SOME TO APPLY
TO MEDICAL SCHOOL, A FEW
COMPLETED THEIR Ph.D.
PROGRAMS.
ONE THING THAT WAS REPORTED TO
US CONSISTENTLY BY ALL
PARTICIPANTS THIS EXPERIENCE WAS
LIFE CHANGING FOR THEM.
THEY ALL WENT TO NEW ZEALAND AS
OUR -- WITH OUR INTERNATIONAL
PARTNERS AT THE UNIVERSITY OF
AUCKLAND, SPENT TEN YEARS THERE,
OVER THE SUMMER TO LEARN ABOUT
DOING RESEARCH, INDIGENOUS
COMMUNITIES, MANY MALDI AND
PACIFIC ISLAND COMMUNITIES
THERE.
WE HAVE SEEN A TREND OF SUCCESS.
MANY STUDENTS ARE GRADUATE
ASSISTANTS ON MY RESEARCH
PROJECTS.
THE OTHER ONE, DR. NURAKAR, WE
CURRENTLY HAVE, OUR TRAINING, I
JOINED HIM FOR THE SECOND ROUND
OF FUNDING.
AGAIN, WE'RE HAVING GREAT
SUCCESS.
ALL OF OUR STUDENTS THAT WE'RE
FUNDING ARE FROM
UNDERREPRESENTED MINORITY
GROUPS, 24% NATIVE HAWAIIAN
PACIFIC ISLANDERS, 43% FILIPINO,
GOING ON TO HEALTH-RELATED
FIELDS, MEDICAL SCHOOL AND SO
FORTH.
THE OTHER THING WE'RE BUILDING
THE CAPACITY, RCMI PROGRAM THAT
NIMHD OVERSEES, OLA HAWAII IS
ONE.
DR. JERRIS HEDGES, NOR EEN
MOKAUA HEADS UP.
EVERY DOLLAR, FIFER DOLLARS IN
RETURN.
ABOUT $3 GETTING -- SECURING OUR
RELATED PROJECTS FROM OUR
INVESTIGATORS.
I WANT TO SHARE BRIEFLY THAT
FUNDED TO BUILD RESEARCH TO
ADDRESS OUR STATEWIDE -- BUILD A
STATEWIDE INFRASTRUCTURE TO DO
CLINICAL AND TRANSLATIONAL
RESEARCH, DR. PALAFOX IS JOINING
ME AS A PRINCIPAL INVESTIGATOR
A PARTNERSHIP BETWEEN OUR THREE
LARGEST INSURE EXCLUSIONS,
UNIVERSITY OF HAWAII, HAWAII
PACIFIC, IT'S STATEWIDE, A
PARTNERSHIP WITH THREE OTHER
MAJOR UNIVERSITIES BUILDING
CAPACITY IN THOSE INSTITUTIONS,
THE OTHER A STRONG EMPHASIS ON
T3 TO T5 RESEARCH, OVEREMPHASIS
ON T1, COMPLEMENTING IN MANY
WAYS.
I WANT TO EMPHASIZE OUR EMERGING
RESEARCHERS, SOME WHO EMERGED,
ONE IS ALIKA, FROM NIMHD, I
RECENTLY AWARDED TO LOOK AT
SOCIOLOGICAL DETERMINANTS OF
IMMUNOEPIGENETIC SIGNATURES OF
DIABETES.
AND RESEARCHERS, BACKGROUNDS
FROM NHPI OR HAVE A STRONG
INTEREST, FROM THOSE GETTING
PILOT FUNDING AND BEGINNING
THEIR CAREERS TO SOMEONE LIKE
DR. POKRREL WHO HAS THREE
R01s, STARTED WITH PILOT
FUNDING.
I WANT TO END WITH CHALLENGES
THAT REMAIN THAT I WANT TO
EMPHASIZE.
NIH INVESTMENT IN STUDIES
FOCUSED ON NHPI IS LOW.
ONLY 17% OF THE TOTAL NIH BUDGET
WENT TO PROJECTS THAT INCLUDED
NHPIs, THAT'S UNACCEPTABLE.
THERE'S A PRACTICE OF
AGGREGATING DATA WITH ASIAN
POPULATIONS OTHER OTHER
CATEGORIES, RENDERING OUR
COMMUNITIES INVISIBLE.
I APPRECIATE NOW THAT THERE'S A
MOVE TOWARDS DISAGGREGATION AND
SERIOUS EFFORT TO DO THAT.
UNFORTUNATELY NOT EVERYONE'S
DOING THAT AND CONTINUES TO BE
PROBLEMATIC FOR US.
THERE'S A LACK OF CONSULTATION
WITH AND INCLUSION OF NHPI
LEADERS IN ORGANIZATION BY
FEDERAL AGENCIES, WE SAW THAT IN
THE COVID CRISIS IN WHICH WE
WEREN'T -- OUR ORGANIZATIONS TO
ADDRESS THE NEEDS OF OUR
COMMUNITIES WEREN'T THE ONES
THAT WERE APPROACHED.
IT WAS ONES FAMILIAR TO AGENCIES
WHO PRETTY MUCH PREDOMINANTLY
SERVED OTHER RACIAL/ETHNIC
GROUPS, WE WERE INCLUDED BUT NOT
TO THE EXTENT COMMENSURATE TO
THE PROBLEMS WE'RE SEEING.
THE OTHER IS WE'RE ABSENT IN
CLINICAL TRIALS AND RESEARCH
MORE BROADLY, PART IS DISTRUST,
THE OTHER IS WE'RE, AGAIN,
INVISIBLE BECAUSE WE'RE
AGGREGATED WHERE WE ARE
INCLUDED.
TOO FEW NHPI FACULTY AND
MENTORS, THE ONES WE HAVE ARE
TAXED MENTORING JUNIOR FACULTY
AND THOSE INTERESTED IN THE
AREA, SLOWING DOWN THIS PROCESS.
PATHWAY IS STILL FRAGMENTS TO
CAREER AND HEALTH SCIENCES,
PEOPLE STILL HAVE TO FIND THEIR
WAY IN THIS PATH THAT'S OFTEN
DIFFICULT TO NAVIGATE.
WE NEED TO FIND WAYS TO MAKE IT
OF SEAMLESS TRANSITION FROM ONE
STAGE OF CAREER TO THE NEXT.
THERE'S OVEREMPHASIS ON GENETIC
AND BIOLOGICAL DETERMINANTS.
OUR COMMUNITIES ARE TELLING US
THEY ARE TIRED OF BEING SURVEYED
AND INTERVIEWED, THEY WANT
SOLUTIONS.
SO WE NEED TO FOCUS MORE ON
INTERVENTION RESEARCH WITH OUR
COMMUNITIES TO BEGIN ADDRESSING
MORE DIRECTLY THE HEALTH
INEQUITIES THEY ARE
EXPERIENCING.
WITH THANK YOU FOR YOUR TIME.
MAHALA.
>> THANK SO MUCH, KEAWE.
WE'RE PAST TIME.
WE HAD SCHEDULED A BREAK.
ESTEBAN HAD A QUESTION ABOUT THE
FRAMINGHAM SCORE, HOW WELL DOES
IT GENERALIZE TO NATIVE
HAWAIIANS, DO YOU HAVE AN ANSWER
TO THAT, KEAWE?
>> I DON'T KNOW, IT'S NEVER BEEN
VALIDATED WITH NATIVE HAWAIIANS.
SOMEWHAT VALIDATED WITH SOME
AMERICAN INDIAN TRIBES.
WE LOOK AT THE DIFFERENT RISK
SCORES, CALCULATORS AND DECIDED
FRAMINGHAM WAS PERHAPS THE
BETTER ONE.
YEAH, IT'S STILL QUESTIONABLE
HOW VALID THAT IS AND WHAT DOES
IT MEAN, THE REDUCTIONS WE'RE
SEEING, WHAT DOES IT MEAN.
WHAT I CAN SAY, THE CHANGE IS
SIGNIFICANT, THAT THERE IS A
CHANGE IN THAT PERCENT
REDUCTION, BUT WHAT DOES IT
ACTUALLY MEAN?
WE DON'T KNOW.
>> OKAY.
THANK YOU.
SO, LET ME TAKE THE PREROGATIVE
OF -- ARE WE SUPPOSED TO TAKE A
BREAK NOW, DENICE?
>> YES.
WE CAN TAKE A BRIEF BREAK.
PEOPLE WOULD LIKE TO STAND UP
PERHAPS.
>> ALL RIGHT.
>> AND STRETCH.
>> LET'S COME BACK AT 2:45 AND
WE'LL CONTINUE WITH PEBBLES.
THANK YOU.
>> THANK YOU.
>>LET'S RECONVENE.
OUR FINAL PRESENTATION IS FROM
PEBBLES FAGAN, WHO IS A
PROFESSOR AND DIRECTOR OF THE
CENTER FOR STUDY OF TOBACCO IN
THE COLLEGE OF PUBLIC HEALTH,
DEPARTMENT OF HEALTH BEHAVIOR,
HEALTH EDUCATION, COLLEGE OF
MEDICINE, UNIVERSITY OF ARKANSAS
FOR MEDICAL SCIENCES.
SHE ALSO IS A SENIOR ADVISER TO
DIRECTOR OF THE OFFICE OF
SMOKING AND HEALTH CENTERS FOR
DISEASE CONTROL AND PREVENTION.
PEBBLES WAS AT THE UNIVERSITY OF
HAWAII, CANCER CENTER THERE,
WHERE SHE WAS PROGRAM DIRECTOR
FOR THE PREVENTION AND CONTROL
PROGRAM AND PRIOR TO THAT SHE
WAS AT NCI, PROGRAM OFFICER.
I MET HER THROUGH THAT NETWORK
IN I THINK 2006, THE TREND
GROUP, TOBACCO RESEARCH NETWORK
ON DISPARITIES.
AND WE WORKED, COLLABORATED, SAW
EACH OTHER A COUPLE TIMES A YEAR
FOR A NUMBER OF YEARS BEFORE SHE
LEFT NIH.
I'M REALLY PLEASED TO HAVE HER
COME AND PRESENT TO US TODAY.
HER TITLE IS SAVING OUR
COMMUNITIES, THE ROLE OF POLICY
AND COMMUNITY INTERVENTION.
>> THANK YOU, ELISEO, THANK
EVERYONE FOR THE OPPORTUNITY TO
PRESENT IN THIS PLATFORM.
AND I WANT TO THANK KEAWE FOR
LETTING ME FOLLOW HIM AS WELL.
AND SO MANY OF THE ISSUES HE
FACES IN HAWAII ARE THE SAME
ISSUES THAT WE FACE IN OUR
GEOGRAPHIC REGION OF ARKANSAS.
AND SO I'M GOING TO ACTUALLY DO
A COUPLE OF THINGS TODAY.
ONE, I WANT TO TALK ABOUT THE
CONTEXTUAL FACTORS THAT
INFLUENCE ON YOU RULE
COMMUNITIES ACCESS
EVIDENCE-BASED INTERVENTION, AND
EXAMPLES I WILL USE TODAY FOCUS
ON TOBACCO USE AND EXPOSURE IN
THE CURRENT PANDEMIC OF
COVID-19.
I WANT TO DISCUSS THE REACH OF
COMMUNITY AND POLICY
INTERVENTIONS, TO RURAL AREAS,
WITH A SPECIFIC FOCUS ON AFRICAN
AMERICAN POPULATIONS.
AND REALLY ONLY HAVE ONE
RECOMMENDATION FOR RESEARCH
TRAINING AND PRACTICE AND
COMMUNITY ENGAGEMENT THAT I
THINK IS VALID AND IMPORTANT AND
RELEVANT FOR THE CLIMATE TODAY.
AND SO LED ME FIRST TALK ABOUT
SOME OF THESE CONTEXTUAL FACTORS
THAT INFLUENCE RURAL
COMMUNITIES' ACCESS TO
EVIDENCE-BASED INTERVENTIONS AND
PRACTICES RELATED TO TOBACCO USE
AND EXPOSURE.
IN ORDER TO PROVIDE THAT
CONTEXT, I HAVE TO PUT A FACE ON
THIS FOR MANY OF YOU WHO MAY NOT
KNOW MUCH ABOUT THE STATE OF
ARKANSAS, THE CONTEXT INCLUDES
PEOPLE IN ORGANIZATIONS THAT
HELP TO FACILITATE THE RESEARCH
AND PRACTICE IN RURAL
COMMUNITIES.
THESE INCLUDE CHURCHES AND WOMEN
IN SORORITIES AND BUSINESSES,
SCHOOLS, COMMUNITY HEALTH
WORKERS, EXTENSION SERVICE
WORKERS, AND MANY VOLUNTEERS IN
THESE COMMUNITIES THAT HELP MAKE
THESE PROJECTS RUN.
I HAVE TO MAKE ONE COMMENT ABOUT
THAT AS WELL, WHICH IS THAT IN A
VERY LOW RESOURCE STATE THAT IS
POLITICALLY, ECONOMICALLY,
EDUCATIONALLY SUPPRESSED, I HAVE
NEVER SEEN SO MUCH VOLUNTEERISM
ANYPLACE THAT I'VE BEEN AND
WILLINGNESS FOR PEOPLE AND
COMMUNITIES TO REALLY ASSIST AND
HELP MOVE SOME OF THE RESEARCH
FORWARD.
SO, I'VE ENJOYED THAT SINCE I
HAVE ACTUALLY BEEN IN THE STATE
OF ARKANSAS.
AND, YOU KNOW, WHEN WE TALK
ABOUT CONTEXT WE ALWAYS TALK
ABOUT THINGS SUCH AS, YOU KNOW,
WHAT COMMUNITIES, YOU KNOW, THE
CONTEXT OF YOUR COMMUNITY
RELATED TO WHERE PEOPLE LIVE,
WORK, AND PLAY.
AND FIRST OF ALL, THE PROBLEM I
HAVE WITH THAT IS THAT THEY
FIRST HAVE TO BE WORKING AND
THEY MUST HAVE RECREATIONAL
PLACES IN ORDER TO PLAY.
AND IN THESE RURAL COMMUNITIES,
UNEMPLOYMENT RATES ARE EXTREMELY
HIGH AND RECREATIONAL ACTIVITIES
ARE LOW.
HERE YOU SEE PICTURES OF
DOWNTOWN HELENA, WHICH IS IN
PHILIP COUNTY, IT'S ONE OF THE
COUNTIES AND A COUNTY SEAT WHERE
WE DO A LOT OF OUR WORK.
YOU SEE PICTURES OF MARVEL, ONE
OF THE SCHOOLS, MARVEL,
ARKANSAS, WHERE WE DO
COLLABORATIVE ACTIVITIES.
THIS GIVES YOU AN IDEA WHAT THE
SETTING LOOKS LIKE FOR THIS
PARTICULAR STUDY THAT WAS FUNDED
BY NIMHD.
SO I'M GOING TO TALK ABOUT SOME
ADDITIONAL CONTEXTUAL THINGS TO
THE STUDY, REDUCING TOBACCO
EXPOSURES AMONG AFRICAN AMERICAN
SOCIALLY DISADVANTAGED WOMEN
CAREGIVERS IN THE ARKANSAS DELTA
REGION FUNDED BY THE CENTERS FOR
EXCELLENCE FOR RESEARCH, ONE OF
TWO RESEARCH PROJECTS FUNDED
UNDER THAT PARTICULAR MECHANISM.
WE CALL THIS PROJECT FAMILIES
RISING TO ENFORCE SMOKE-FREE
HOMES.
AND IT'S A BRIEF DESCRIPTION OF
THAT PARTICULAR PROJECT TO
PROVIDE SOME CONTEXT.
FRESH IS AN ONGOING RANDOMIZED
CONTROL BEHAVIOR INTERVENTION
TRIAL THAT AIMS TO INCREASE
COMPREHENSIVE SMOKE-FREE
POLICIES IN THE HOME, PRIMARY
OUTCOME, QUITTING SMOKING AS
SECONDARY OUTCOME, FOCUSING ON
AFRICAN AMERICAN CAREGIVERS,
CURRENT CIGARETTE OR LITTLE
CIGAR SMOKERS IN LEE AND
PHILLIPS COUNTY IN RURAL
ARKANSAS.
THE SAMPLE WAS RECRUITED FROM
COUNTIES WHERE SMOKING
PREVALENCE ARE EXTREMELY HIGH,
SO THIS MAP ACTUALLY SHOWS YOU
THE LOCATION OF THE DELTA REGION
HIGHLIGHTED IN RED ON THIS MAP.
AND YOU HEAR A LOT ABOUT THE
DELTA REGION, BUT GETTING TO
KNOW IT IS AN EVEN IMPORTANT
STORY.
SO LEE, PHILLIPS COUNTY, THE
COUNTIES IN THE DARK PURPLE HAVE
SMOKING RATES THAT RANGE BETWEEN
23 AND 26%.
SO AS YOU CAN SEE, THESE SMOKING
RATES ARE NEARLY DOUBLE THE
NATIONAL AVERAGE, AND WE ALSO
KNOW THAT AFRICAN AMERICANS IN
PARTICULAR ARE MORE LIKELY TO BE
EXPOSED TO SECONDHAND SMOKE AND
LUNG CANCER INCIDENCE AND DEATH
RATES IN ARKANSAS AND AMONG
AFRICAN AMERICANS ARE HIGHER
THAN THE NATIONAL AVERAGE.
AND SO OUR STUDY SOUGHT TO
REALLY FOCUS ON SMOKE-FREE
POLICIES AS A PRIMARY OUTCOME
AND QUITTING AS A SECONDARY
OUTCOME BECAUSE OF THESE
CONTEXTUAL FACTORS.
IN ADDITION TO THESE PLACES
BEING IN LOW RESOURCE DELTA
REGIONS OF ARKANSAS, I WANT TO
NOTE THAT WE CONDUCTED OUR STUDY
IN FOUR COUNTIES, AND THEN THAT
INCLUDES WHERE WE DID OUR
FORMATIVE RESEARCH IN DESHA AND
CHICOT COUNTIES AND INTERVENTION
STUDY IN LEE AND PHILLIPS
COUNTY, WHERE THERE ARE HUGE
PROVIDER GAPS THAT IMPACT PEOPLE
CAN RECEIVE ADVICE TO QUIT OR
MOTIVATION TO KEEP THEIR HOME
SMOKE FREE FROM A HEALTH CARE
PROVIDER.
IN LEE COUNTY THE RATIO OF A
PRIMARY CARE PROVIDER TO
PATIENTS IS 3,340 PER 1
PROVIDER, AND IN PHILLIPS COUNTY
IT'S 2900 PER 1 PRIMARY CARE
PROVIDER.
ALL COUNTIES IN ARKANSAS ARE
CONSIDERED MEDICALLY
UNDERSERVED, PARTIALLY MEDICALLY
UNDERSERVED, SO WE HAVE TO COME
UP WITH ALTERNATIVE
INTERVENTIONS WHEN THEY ARE NOT
RECEIVING ADVICE TO QUIT, IN A
MEDICAL SETTING.
JUST TO GIVE YOU SOME MORE
CONTEXTUAL INFORMATION ABOUT THE
FOUR COUNTIES THAT WE WORKED FOR
THE FIRST STUDY, FORMATIVE
RESEARCH AND RANDOMIZED TRIAL
THESE ARE RURAL COUNTIES, AGAIN.
THEY HAVE SOME OF THE LOWEST
HEALTH RANKINGS IN THE STATE.
THERE ARE ONLY 75 COUNTIES IN
THE STATE.
AND YOU CAN SEE THAT THEY RANK
AT THE BOTTOM OF THE LIST.
THESE COUNTIES HAVE MORE THAN
48% OF THE POPULATION WHO ARE
AFRICAN AMERICAN.
OBESITY RATES ARE QUITE HIGH.
EXCEEDING 70% IN ALL COUNTIES.
ONE-THIRD OF CHILDREN IN EACH OF
THESE COUNTIES ARE FOOD
INSECURE.
POVERTY RATES EXCEED 25%.
MORE THAN 47% OF PEOPLE IN EACH
OF THESE COUNTIES ARE -- RECEIVE
ASSISTANCE THROUGH SUPPLEMENTAL
NUTRITION ASSISTANCE PROGRAM,
AND SOMETHING TO NOTE IS THAT
THERE'S STILL VERY LOW ACCESS TO
BROADBAND IN THESE COUNTIES, SO
WHEN WE TALK ABOUT TELEMEDICINE
APPROACHES, NOT ONLY DO THEY
HAVE LOW BROADBAND ACCESS BUT
TELEPHONE ACCESS IS A HUGE
PROBLEM IN THESE PARTICULAR
COUNTIES.
THE OTHER CONTEXTUAL PIECE THAT
I THINK IS IMPORTANT FOR US TO
RECOGNIZE THAT SOME OF YOU MAY
NOT BE FAMILIAR WITH IS THE
ELAINE MASSACRE THAT OCCURRED IN
PHILLIPS COUNTY.
MANY OF YOU MAY HAVE HEARD OF
TULSA AND ROSEWOOD AND OTHER
ATROCITIES THAT HAPPENED IN THE
UNITED STATES.
IDA B WELLS WROTE ABOUT THE
ELAINE MASSACRE THAT OCCURRED
OVER A HUNDRED YEARS AGO.
THIS REALLY REPRESENTS SOME OF
THE SYSTEMIC RACISM AND LEGACY
IN THESE COUNTIES TO HELP
EXPLAIN THE CYCLE OF OPPRESSION
THAT OCCURS IN THESE COUNTIES.
THE ELAINE MASSACRE STEMMED FROM
FARMERS WHO WERE ORGANIZING --
BLACK FARMERS ORGANIZING AROUND
TRYING TO GET FAIR WAGES AND
WHEN WHITE MEN FOUND OUT THAT
THEY WERE ORGANIZING THEY WENT
TO THE CHURCH WHERE THEY WERE
MEETING AND ACTUALLY SHOT AT
THEM.
AFTER THAT POINT, BLACKS SHOT
BACK.
ONE WHITE MAN WAS KILLED.
AND THEN THE WORD THAT BLACKS IN
THE COUNTY WERE UPRISING, WHICH
WAS NOT THE CASE, AND TO MAKE
THIS LONG STORY SHORT, OVER 200+
AFRICAN AMERICANS WERE
SLAUGHTERED.
THEY WERE ROUNDED UP, EVEN
AFRICAN AMERICANS WHO WERE
COMING BACK IN TOWN DURING THIS
TIME PERIOD WHO KNEW NOTHING OF
WHAT WAS GOING ON WERE RALLIED
UP, PLACED UNDER CITIZEN'S
ARREST, AND EVEN THE GOVERNOR OF
ARKANSAS CALLED IN TROOPS FROM
AROUND NEIGHBORING COUNTIES TO
ACTUALLY CONTROL, IF YOU WILL,
BLACKS WHO THEY THOUGHT WERE
UPRISING.
WHEN BLACKS SAW THAT THESE
TROOPS WERE COMING, THEY THOUGHT
THAT THEY WERE COMING THERE TO
PROTECT THEM.
SO THEY CAME OUT OF HIDING AND
MANY WERE SHOT AND KILLED.
UNTIL THIS DAY, THERE IS STILL
DENIAL AROUND WHAT HAPPENED AND
THAT OPPRESSIVE KIND OF THING
THAT HAPPENED OVER A HUNDRED
YEARS AGO STILL HAS AN IMPACT ON
HOW PEOPLE RELEASE THEMSELVES
FROM THE OPPRESSIVE CONDITIONS
CAUSED BY THE SYSTEMIC RACISM.
AND SO WE HAVE TO TAKE THAT INTO
CONSIDERATION WHEN WE'RE DOING
OUR INTERVENTIONS.
SO LET ME DESCRIBE THE
INTERVENTION DESIGN.
AGAIN, THIS WAS A RANDOMIZED
CONTROLLED TRIAL WHERE WE
RECRUITED 200 WOMEN TO
PARTICIPATE IN THIS SMOKING
STUDY.
THE CONTROL GROUP RECEIVED
EDUCATIONAL MATERIALS ALONE.
AND THEN THE INTERVENTION GROUP
RECEIVED MOTIVATIONAL
COUNSELING, VIA TELEPHONE, IT
WAS SUPPOSED TO BE IN PERSON BUT
WHEN COVID HIT WE HAD TO GO TO
TELEPHONE COUNSELING WHICH
CAUSED ANOTHER CHALLENGE FOR US.
THEY RECEIVED EDUCATIONAL
MATERIALS AS WELL.
THEY WERE SUPPOSED TO GET
FEEDBACK ON TOBACCO EXPOSURE AT
ONE MONTH, THREE AND SIX MONTHS,
BUT THAT'S ONLY HAPPENING AT ONE
MONTH NOW BECAUSE WE'RE NO
LONGER COLLECTING CARBON
MONOXIDE OR SALIVA BECAUSE THAT
HAPPENED AT THE TIME WHEN
COVID-19 HIT.
WE'RE LUCKY TO HAVE TWO GOOD
COMMUNITY HEALTH WORKERS
INTEGRATED INTO THE COMMUNITY TO
DELIVER THE INTERVENTIONS IN THE
COMMUNITY SETTINGS.
OUR MOTIVATIONAL COUNSELING
PROTOCOL FOLLOWS THE FIVE As,
AND WE'RE FOCUSED ON, YOU KNOW,
CREATING VERY STRONG MESSAGES
THAT HELP AFRICAN AMERICAN WOMEN
KEEP THEIR HOME SMOKE FREE AND
MAINTAIN CLEAN INDOOR AIR
POLICIES IN THE HOME AROUND NOT
JUST CIGARETTES BUT ALL SMOKE
TOBACCO.
WE'RE ALSO LOOKING AT QUITTING
AS AN OUTCOME.
THEY DO COUNSEL WOMEN ABOUT THAT
AS WELL.
AND SO LET ME JUST SWITCH GEARS.
I WANTED TO PROVIDE SOME CONTEXT
IN WHICH THIS INTERVENTION
OCCURS AND TELL YOU A LITTLE BIT
ABOUT IT.
BUT LET ME TELL YOU A LITTLE BIT
MORE ABOUT SOME OF THE
INFORMATION THAT WE UNCOVERED AT
BASELINE.
AND SO, IN DOING THAT, I HAVE TO
MENTION SOME OF OUR UNDERLYING
ASSUMPTIONS ABOUT POLICIES,
WHICH WE KNOW POLICIES ARE AN
IMPORTANT STRATEGY TO PROTECT
POPULATIONS THAT EXPERIENCE
DISPARITIES FROM TOBACCO SMOKE
EXPOSURE AND SMOKING AND IF
THERE WERE A BAN ON MENTHOL
TOBACCO WHICH IS MOST COMMONLY
USED BY AFRICAN AMERICANS AND
NATIVE HAWAIIAN POPULATIONS
PERHAPS DISPARITIES IN SMOKING,
EXPOSURE TO SMOKE WOULD BE
LOWER.
SO, IN UNTIL SUCH A DAY COMES
WE HAVE TO TRY TO MOVE FORWARD
WITH OTHER KINDS OF POLICY
INTERVENTIONS WHILE WE'RE
WAITING FOR FEDERAL POLICY TO
OCCUR.
YOU MAY SAY, WELL, WHY NOT STATE
LEVEL POLICIES?
WE LIVE IN A STATE WHERE SUCH A
THING IS NOT POSSIBLE.
THERE'S PREEMPTION RELATED TO
TOBACCO POLICIES, EXCEPT WHERE
IT DEALS WITH CLEAN INDOOR AIR
POLICIES.
THE COUNTIES TO DO SUCH A THING.
BUT WE STILL DON'T HAVE 100%
COUNTIES ELECTING TO CLEAN
INDOOR AIR POLICIES.
WE RELY ON VOLUNTARY POLICIES IN
THE HOME, AND THAT'S WHAT MY
STUDY FOCUSED ON.
I WANT TO TAKE YOU BACK TO 2006
BEFORE I PRESENT SOME OF THE
RESULTS FROM MY CURRENT STUDY
BECAUSE ONE OF THE THINGS THAT'S
IMPORTANT TO RECOGNIZE IS THAT
YEARS AGO, WE TRIED TO BRING
ATTENTION TO THE ISSUE OF WOMEN,
PARTICULARLY WOMEN OF COLOR AND
WOMEN FROM LOW INCOME
BACKGROUNDS, AND HOW
EVIDENCE-BASED POLICIES IMPACT
THEM AND THEIR SMOKING BEHAVIOR.
AND SO, WE DID A PAPER THROUGH
OUR TOBACCO RESEARCH NETWORK ON
DISPARITIES, WHERE WE FOUND,
THIS IS USING THE NATIONAL
SAMPLE, WHERE WE FOUND THAT
WOMEN WHO WERE POOR OR LEAST
LIKELY TO LIVE IN HOMES WITH A
COMPLETE BAN A SMOKING, FOUND
THIS TO BE TRUE FOR ALL WOMEN,
AFRICAN AMERICAN, ASIAN AMERICAN
AND PACIFIC ISLANDER AND WHITE
WOMEN AS WELL.
AND 56% OF THE POOREST WOMEN HAD
COMPLETE BANS ON SMOKING IN THE
HOME COMPARED TO 67% OF WOMEN,
150% OR MORE ABOVE THE POVERTY
LEVEL, POOR WOMEN PERMITTED
ANYWHERE IN THE HOME HAD LOWER
LIKELIHOOD OF WOMEN WHO DID NOT
PERMIT SMOKING ANYWHERE.
AND SO WE WERE DOING THIS AT A
TIME WHEN IT WAS NOT SEXY OR
MANY PEOPLE JUST WERE NOT
LOOKING AT THE PROBLEM OF
SMOKING AND EXPOSURE TO SMOKE
AMONG BLACK WOMEN.
IN FACT, ANOTHER PAPER THAT WE
TRIED TO PUBLISH IN 2006 WHEN WE
FIRST GOT THE REVIEWS BACK ON
THIS PAPER, THIS WAS CALLED
HETEROGENEITY OF SMOKING
BEHAVIOR AMONG AFRICAN AMERICAN
WOMEN, THAT THE FIRST JOURNAL WE
SUBMITTED THIS PAPER TO, TH
EDITOR'S COMES WERE SMOKING
AMONG BLACK WOMEN IS NOT A
PROBLEM AND WE DO NOT SEE VALUE
IN PUBLISHING PAPER WHEN THERE
WAS ABUNDANCE OF EVIDENCE
SHOWING TRENDS IN SMOKING AMONG
BLACK WOMEN COMPARABLE TO THAT
OF WHITE WOMEN AND LUNG CANCER
DISPARITIES BOTH IN INCIDENCE
AND DEATH RATES RELATING TO
BLACK WOMEN.
AND SO WHAT I -- ONCE I CAME OUT
OF GOVERNMENT AND HAD THE
OPPORTUNITY TO BUILD ON THAT
PRIOR RESEARCH, I INITIATED THIS
PARTICULAR STUDY HERE IN
ARKANSAS CALLED PROJECT FRESH
THAT I JUST DESCRIBED.
HERE I WANT TO POINT TO WHAT WE
FOUND RELATED TO COMPREHENSIVE
SMOKE-FREE RULES AMONG AFRICAN
AMERICAN WOMEN ENROLLED IN THIS
STUDY.
COMPREHENSIVE SMOKE-FREE RULES
IS DEFINED AS NO ONE IS ALLOWED
TO SMOKE ANYWHERE INSIDE THE
HOME, INCLUDING CIGARETTES,
CIGARS, HOUKA, PIPES,
E-CIGARETTES, VERSUS THOSE WHO
ALLOWED AT LEAST ONE TOBACCO
PRODUCT TO BE SMOKED SOME PLACES
OR ANYWHERE INSIDE THE HOME SO
THIS TABLE REPORTS JUST SOME OF
THE DATA THAT WE FOUND.
I DO WANT TO DESCRIBE THE
POPULATION FOR YOU AS WELL.
AGAIN, THIS IS A SAMPLE OF
AFRICAN AMERICAN WOMEN, 75%
IDENTIFIED AT HETEROSEXUAL
STRAIGHT, 61% DO NOT WORK FOR
PAY.
26% HAD LESS THAN A HIGH SCHOOL
EDUCATION.
65% EARNED -- HOUSEHOLD INCOMES
LESS THAN $10,000 PER YEAR.
37% SAID THEY LIVED COMFORTABLY
BUT THAT'S RELATIVE BECAUSE MOST
OF THESE WOMEN ARE POOR.
AND ABOUT 83% RECEIVE SNAP
BENEFITS IN THE PAST YEAR.
SO WHAT DID WE FIND WITH REGARD
TO THE PREVALENCE OF
COMPREHENSIVE SMOKE-FREE RULES
IN THE HOME?
AMONG THIS POPULATION GROUP, WE
FOUND THAT OVERALL WOMEN WERE
MORE LIKELY TO HAVE A PARTIAL
BAN IN THE HOME, COMPARED TO
HAVING THE COMPLETE OR NO BAN IN
THE HOME.
AND WHEN WE LOOKED AT IT BY
DEMOGRAPHICS, SOCIAL DEMOGRAPHIC
FACTORS, WE FOUND THAT WOMEN FOR
EACH OF THESE EMPLOYMENT
CATEGORIES THAT WE FOUND
SIGNIFICANT DIFFERENCES THERE
SUCH THAT WOMEN WHO -- PART-TIME
WORK HERS A HIGHER PREVALENCE OF
HAVING NO BAN THAN EMPLOYED AND
UNEMPLOYED WOMEN IN OUR SAMPLE.
WE ALSO FOUND THAT PARTIAL BANS
WERE HIGHER AMONG ALL GROUPS WHO
REPORTED THEIR OVERALL FINANCIAL
SITUATION, BUT PREVALENCE RATES
OF REPORTING A PARTIAL BAN WAS
HIGHEST AMONG WHO SAID THAT THEY
MET NEEDS WITH LITTLE LEFT, JUST
MET BASIC NEEDS VERSUS WOMEN WHO
SAID THAT THEY LIVE COMFORTABLY.
AND SO, WOMEN WHO LIVED
COMFORTABLY, WHO INDICATED THAT,
AGAIN IT'S RELATIVE BECAUSE MOST
ALL OF THESE WOMEN ARE FAIRLY
POOR, HAVE PREVALENCE OF
COMPLETE BAN THAN WOMEN WHO DID
NOT SAY THEY LIVED COMFORTABLY.
WE DIDN'T FIND ANY OTHER
DIFFERENCES BY OTHER DEMOGRAPHIC
FACTORS IN THIS PARTICULAR
SAMPLE.
SOMETHING ELSE INTERESTING THAT
WE FOUND, RELATED TO HOME RULES
ABOUT TOBACCO USE, IN THIS
PARTICULAR SAMPLE OF WOMEN, WE
ONLY FOUND THAT 33% REPORTED A
COMPLETE BAN ON CIGARETTE
SMOKING.
SO, NOT ONLY DID WE LOOK AT BANS
RELATED TO ALL SMOKE TOBACCO
PRODUCTS BUT WE ALSO TEASED OUT
THE DATA FOR EACH TYPE OF
TOBACCO PRODUCT.
AND SO, FAIRLY LOW PREVALENCE OF
BANNING CIGARETTES COMPLETELY IN
THE HOME, SLIGHTLY HIGHER FOR
CIGARS, E-CIGARETTES AT 78%, 81%
FOR IQOS, 81% HOUKAH.
THE CAVEAT THEY ARE NOT EVEN
USING E-CIGARETTES, HOUKAH,
IQOS.
YOU SEE STRONGER BANS FOR
PRODUCTS THAT THEY DON'T
ACTUALLY USE.
BECAUSE WE SAW DIFFERENCES IN
PREVALENCE OF HOME BANS BY
EMPLOYMENT STATUS AND OVERALL
FINANCIAL SITUATION SOUGHT TO
EXAMINATION EACH FINANCIAL
SITUATION WITH OUTCOMES HAVING A
COMPLETE BAN ON ALL TOBACCO USE,
PARTIAL BAN OR HAVING NO BAN ON
ALL TOBACCO PRODUCTS.
WE DID NOT FIND AN ASSOCIATION
WITH EMPLOYMENT STATUS, AND
HAVING A COMPLETE BAN ON SMOKING
VERSUS NO BAN OR PARTIAL BAN,
BUT FOR WOMEN WHO INDICATED THEY
JUST MEET BASIC NEEDS OR MEET
NEEDS WITH LITTLE LEFT, THESE
WOMEN HAD A LOWER ODDS OF HAVING
A COMPLETE BAN ON ALL TOBACCO
PRODUCTS IMPAIRED TO WOMEN WHO
LIVED COMFORTABLY, AND THEN WHEN
WE PARSED THESE OUT WE FOUND
THAT THOSE WHO JUST MEET BASIC
NEEDS OR MEET NEEDS WITH LITTLE
LEFT HAD GREATER ODDS OF
PARTIAL BAN THAN WOMEN WHO SAID
THEY LIVED COMFORTABLY.
SO WHEN WE LOOKED AT IT BY EACH
TYPE OF TOBACCO PRODUCT, I WON'T
SHOW ALL THE RESULTS HERE, I
JUST REPORTED IT OUT FOR CIGAR
SMOKING BANS AND CIGARETTE
SMOKING BANS, AND WE TRIED TO
COME UP WITH THE SOCIAL
DEPRIVATION CATEGORY SUCH THAT
WE LOOK AT UNEMPLOYED WOMEN
ALONE, THEY ARE UNEMPLOYED AND
JUST MEET BASIC NEEDS, AND IF
THEY ARE UNEMPLOYED, JUST MEET
BASIC NEEDS, DON'T MEET NEEDS,
PLUS HAVING LESS THAN HIGH
SCHOOL EDUCATION, AND SO THE
ASSUMPTION WAS GREATER SOCIAL
DEPRIVATION IS ASSOCIATED WITH
NOT HAVING A SMOKING BAN.
WHAT WE FOUND HERE IS THAT THOSE
WOMEN WHO WERE UNEMPLOYED AND
REPORTED THEY JUST MEET BASIC
NEEDS OR DON'T MEET BASIC NEEDS
ARE MORE THAN TWICE AS LIKELY AS
EMPLOYED WOMEN TO HAVE A CIGAR
BAN IN THE HOME.
WE DID NOT SEE ANY SIGNIFICANT
DIFFERENCES THERE FOR A
CIGARETTE SMOKING BAN.
AND SIMILAR TO WHAT WE DID IN
THE PAPER THAT WE PUBLISHED WITH
DR. SHAVERS IN 2006, WE ALSO
WANTED TO LOOK AT THE
ASSOCIATION BETWEEN HAVING A BAN
AND
[AUDIO DISTORTION]
TO QUIT.
AMONG WOMEN WHO HAD A COMPLETE
BAN, THAT IS SMOKING NOT ALLOWED
ANY WHERE INSIDE THE HOME, 29%
INTENDED TO QUIT IN THE NEXT 30
DAYS.
BUT AMONG THOSE WOMEN WITH A
PARTIAL BAN OR NO BAN AT ALL, WE
SAW ONLY 11% HAVE INTENTION TO
QUIT.
THESE DIFFERENCES WERE
SIGNIFICANT, THEY WERE NOT
SIGNIFICANT FOR CIGAR SMOKING.
SO WE UNDERSTAND THAT, YOU KNOW,
WHEN THERE IS SMOKING NOT
ALLOWED IN THE HOME, THAT
INTENTION TO QUIT TENDS TO BE
MUCH STRONGER.
THE OTHER THING I JUST WANTED TO
MENTION ON SOME -- SEPARATE FROM
SMOKE-FREE POLICIES, BECAUSE
POLICIES ALSO CAN HAVE AN IMPACT
ON WHETHER OR NOT THESE MENTHOL
SMOKERS QUIT AS WELL, AND 70% OF
THE WOMEN IN OUR SAMPLE WERE
MENTHOL SMOKERS.
THAT'S CONSISTENT WITH THE
NATIONAL AVERAGE FOR AFRICAN
AMERICANS.
WE SAW THAT, YOU KNOW, MENTHOL
SMOKERS IN THIS SAMPLE LIKE
NATIONAL SAMPLES ARE MORE LIKELY
TO HAVE THEIR CIGARETTE WITHIN
THE FIRST FIVE MINUTES OF
WAKING, SHOWING GREATER SIGNS OF
NICOTINE DEPENDENCE.
AND WE ALSO SAW THAT AS YOU
INCREASE SOCIAL DEPRIVATION,
WITH THESE WOMEN, THAT THEY SHOW
HIGHER INDICATORS OF NICOTINE
DEPENDENCE.
SO, MY POINT IN TRYING TO
PROVIDE THIS CONTEXT IS THAT
THERE ARE LOTS OF FACTORS THAT
IMPACT THE REACH OF
EVIDENCE-BASED PRACTICES TO
RURAL COMMUNITIES AND THAT HAS
IMPLICATIONS FOR HOW WE CONDUCT
OUR INTERVENTION AND WHAT TYPES
OF FUNDING MECHANISMS AND
OPPORTUNITIES ARE AVAILABLE TO
DEAL WITH THESE CONTEXTUAL
FACTORS.
AND SO HOW IS IT THAT WE REACH
AFRICAN AMERICAN WOMEN WHO ARE
POOR, LIVE IN LOW RESOURCE
COMMUNITIES, AND HAVE LIMITED
TRANSPORTATION, PHONES, AND ET
CETERA.
SO HERE I JUST WANT TO POINT OUT
THAT SIMILAR TO WHAT YOU SEE
WITH NATIVE HAWAIIAN
COMMUNITIES, THERE ARE VERY FEW
CULTURALLY RELEVANT INTERVENTION
MATERIALS FOR AFRICAN AMERICAN
WOMEN.
AND SO WE HAD TO CREATE OUR OWN,
PARTICULARLY AS IT FOCUSED ON
SECONDHAND SMOKE EXPOSURE AND
QUITTING.
BUT THE GOOD NEWS IS THAT THE
TAKE IT OUTSIDE PROGRAM THAT
EMORY HAS HAD FOR YEARS, WE
COULD USE SOME OF THEIR
MATERIALS AS A MODEL.
BUT THESE ARE THE MATERIALS THAT
THE WOMEN RECEIVED AT ONE MONTH,
FOUR-STEP PLAN TO KEEP THEIR
HOME SMOKE FREE.
AT THE THREE MONTHS, THE
SMOKE-FREE HOME CHECK-IN, HOW
YOU'RE DOING.
AND THE LAST PIECE OF MATERIAL
THAT WAS A PHOTO NOVELLA THAT
ONE OF MY STUDENTS CREATED FOR
HER FINAL PROJECT THAT FOCUSED
ON HOW TO HELP AFRICAN AMERICAN
WOMEN QUIT SMOKING MENTHOLATED
CIGARETTES.
AND SO, THROUGHOUT NOT ONLY JUST
DEVELOPING THOSE MATERIALS, WE
HAD TO DO FURTHER ADAPTATIONS TO
OUR STUDY BECAUSE OF COVID-19.
NOT ONLY DROP SOME THINGS SUCH
AS COLLECTION OF SALIVA AND
CARBON MONOXIDE AT DIFFERENT
POINTS BUT WE HAD TO DEAL WITH
THE FOOD SECURITY ISSUES BECAUSE
OUR COMMUNITY HEALTH WORKERS
KEPT SAYING THAT THEY WERE
GETTING MULTIPLE REQUESTS FROM
PEOPLE IN THE COMMUNITY ABOUT
GETTING FOOD AND SO WE STARTED
WORKING WITH THE FOOD
[AUDIO DISTORTION]
TO GET DISTRIBUTIONS OF FOOD TO
DISTRIBUTE TO COMMUNITIES IN
WHICH WE WORKED.
THE NEWS IS LEE AND PHILLIPS
COUNTY ARE HIGH ON THE LIST OF
THE ARKANSAS FOOD BANK, GOOD
NEWS, THEY WERE WILLING TO GIVE
US THE FOOD SO WE COULD DO FOUR
FOOD DISTRIBUTIONS PER YEAR.
HERE WHAT YOU SEE IS OUR STAFF
AT TATE, A VOLUNTEER, LEGACY
FROM THE ELAINE MASSACRE, HE'S
THERE TOO, AND GIVING OUT THE
FOOD SAMPLE, FOOD TO CLIENTS WHO
CAME BY.
NOT EVERYONE COULD COME AND GET
IT.
YOU HAVE PEOPLE LIKE THE POLICE
OFFICERS AND OTHER PEOPLE IN THE
COMMUNITY WHO COME BY AND PICK
UP FOOD TO TAKE TO SOME OF THE
HOUSING PROJECTS AREA OR PEOPLE
WHO ARE SICK AND SHUT IN OR
DON'T HAVE TRANSPORTATION.
WE ALSO TEAMED UP WITH OUR
COLORECTAL CANCER SCREENING
PROGRAM, THE TOP PICTURE YOU SEE
DR. KRILL, ACTUALLY OUT WORKING
IN THE FIELD, TRYING TO CONVINCE
PEOPLE TO TAKE THE FIT TEST, SO
THAT WE COULD ATTEND NOT ONLY TO
THE NEEDS OF FOOD INSECURITY BUT
CAPTURE PEOPLE AT ONE TIME TO
FILL FILL -- FULFILL OTHER NEEDS
BECAUSE WE KNOW PEOPLE ARE
FALLING BEHIND IN CANCER
SCREENINGS AS WELL.
AND SO THESE ARE SOME OF THE
ADAPTATIONS WE HAD TO MAKE.
WE ALSO LEARNED THAT THROUGHOUT
THE STUDY THIS GRAPH HERE THAT
YOU SEE SHOWS YOU THE NUMBER OF
RECRUITMENT ACTIVITIES IN THE
BLUE LINE, AND THE NUMBER OF
SUCCESSFUL REFERRALS.
WORD OF MOUTH OVER TIME IS
REALLY THE KEY TO GETTING PEOPLE
ENROLLED IN STUDIES IN RURAL
AREA.
THAT SMOKER RECRUITS OTHER
SMOKERS, THEY GET A REFERRAL FEE
OF ABOUT $20 PUT ON THEIR VISA
CARD AND THAT IS REALLY THE WAY
IN WHICH WE WERE ABLE TO REACH
THE 200 WOMEN THAT WE WERE
AIMING TO RECRUIT FOR OUR STUDY.
SO WORD OF MOUTH IS VERY
POWERFUL.
THE OTHER THING I WANT TO POINT
OUT IS THAT 89%, WE HAD 89% OF
THE WOMEN WHO WE SCREENED WERE
ELIGIBLE FOR THE STUDY.
91.7%, WE HAD A 91.7% ENROLLMENT
RATE AMONG ELIGIBLE WOMEN.
95.9% OF WOMEN COMPLETED
BASELINE SURVEY AMONG THOSE WHO
WERE ACTUALLY ELIGIBLE.
AND SO BEFORE I SWITCH TO
TALKING ABOUT COVID-19, I'M
WATCHING THE CLOCK HERE, JUST
SOME IMPORTANT POINTS TO REALLY
TAKE HOME RELATED TO THE CONTEXT
OF WORKING IN THESE RURAL
COMMUNITIES, PARTICULARLY WITH
AFRICAN AMERICAN WOMEN.
WE CAN'T IGNORE THE
TRANSPORTATION ISSUES, WHICH IS
WHY WE ORIGINALLY HAD COMMUNITY
HEALTH WORKERS GOING TO THE
HOMES TO DELIVER THE
MOTIVATIONAL COUNSELING, AND
THEN WE HAD TO BACK OFF THAT AND
DO PHONES.
EVERY MONTH MY STAFF WERE HAVING
TO TRACK PEOPLE DOWN BECAUSE
THEY SWITCHED PHONES ALL THE
TIME.
WITH THE NEW STUDY THAT WE HAD
FUNDED THROUGH NIMHD, THROUGH
THE P50 CHRONIC DISEASE CENTERS,
WE'RE PROVIDING TABLETS AND
PHONES AND JET PACKS BECAUSE
THEY DON'T HAVE CONSISTENT
ACCESS.
WE CANNOT IGNORE THE FOOD
INSECURITY ISSUES BECAUSE,
AGAIN, NOT ONLY DO THESE
COUNTIES HAVE HIGH FOOD
INSECURITY RATES BUT INFLATION
IS RISING AND COVID HAS CAUSED
PEOPLE TO SUFFER MORE FROM
HUNGER.
WE HAVE TO INCORPORATE THESE
THINGS INTO OUR INTERVENTIONS.
AND THE IMPLEMENTATION OF
VOLUNTARY HOME POLICIES HAS SUCH
A LOW PRESENTATION AMONG WOMEN
SO I'M GLAD WE'RE DOING THIS
STUDY AND WE'LL BE HAPPY TO
SHARE THOSE RESULTS WHEN WE
FINALIZE THIS RANDOMIZED -- THE
RESULTS FROM THE INTERVENTION
ITSELF.
AND WE KNOW THAT INTENTION TO
QUIT IS HIGHER AMONG WOMEN WITH
COMPLETE BANS, AND TRYING TO
MOTIVATE PEOPLE TO KEEP THEIR
HOMES SMOKE FREE WILL HOPEFULLY
HAVE AN EFFECT ON QUIT RATES,
WHICH IS OUR SECONDARY OUTCOME.
NOW I'M GOING TO SWITCH OVER TO
THE COVID-19 VERY QUICKLY.
BECAUSE SOME OF THE CONTEXTUAL
FACTORS THAT AFFECTED OUR STUDY
ON -- RELATED TO SMOKING ARE THE
SAME FACTORS THAT AFFECT THE
WORK THAT WE'RE DOING WITH THE
ARKANSAS SEAL PROJECT.
AND SO THROUGH THIS PROJECT OUR
GOAL WAS TO CREATE COVID-19-FREE
STATE WHERE NO ONE IS LEFT
BEHIND TO SUFFER FROM
DEVASTATING EFFECTS OF COVID-19,
OR THE UNINTENDED CONSEQUENCES.
ARKANSAS LAGS BEHIND IN TERMS OF
THE NATIONAL AVERAGES RELATED TO
VACCINATIONS, AND THAT INCLUDES
COUNTIES WHERE 25% OF THE
POPULATION IS AFRICAN AMERICAN.
WE'RE TRACKING THESE COUNTIES.
AND WE HAVE COALITION MEMBERS
FROM THESE COUNTIES.
VACCINATION RATES ARE AS LOW AS
35% IN PLACES LIKE LEE COUNTY,
OR AS HIGH AS 59% IN PLACES LIKE
DALLAS COUNTY.
WE'RE ALSO TRACKING VACCINATION
RATES IN COUNTIES WHERE 10,000
PEOPLE IN THE COUNTY ARE AFRICAN
AMERICAN SUCH AS PULASKI COUNTY
WHERE I LIVE, WHERE LITTLE ROCK
IS LOCATED, CRITTENDON WHICH IS
WEST MEMPHIS, AND THESE ARE THE
MOST POPULATED COUNTIES THAT
INCLUDE AFRICAN AMERICANS, AND
PLACES LIKE MISSISSIPPI, ST.
FRANCIS, UNION, JEFFERSON,
PHILLIPS, ALL PART OF THE DELTA
REGION.
SO EVEN IN THE COUNTY THAT HAS
THE HIGHEST PERCENTAGE OF
AFRICAN AMERICANS, 40% OF
PULASKI COUNTY IS AFRICAN
AMERICAN, ONLY 54% OF PEOPLE IN
THE COUNTY ARE ACTUALLY
VACCINATED.
AND SO I'M GOING TO BRIEFLY
REPORT ON SOME OF THE THINGS
THAT WE FOUND FROM OUR COALITION
SURVEY SO YOU CAN UNDERSTAND THE
CONTEXT IN WHICH THESE
ORGANIZATIONS ARE WORKING.
WE HAVE 125 PARTICIPANTS IN OUR
DATABASE.
THOSE PEOPLE WHO HAD
PARTICIPATED IN AT LEAST ONE
COALITION MEETING WERE ELIGIBLE
TO PARTICIPATE IN OUR COALITION
SURVEY.
WE MEET TWICE PER MONTH TO
PROVIDE THEM WITH ACCURATE AND
UP-TO-DATE INFORMATION ABOUT
COVID-19.
AND WE ALWAYS SAY TO THEM, IT'S
ACCURATE AND UP TO DATE AT THE
TIME THAT WE HAVE THAT
INFORMATION.
TO DATE WE'VE CONDUCTED ONE
BASELINE SURVEY, NOW IN THE
FIELD CONDUCTING THE SECOND
SURVEY TO LOOK AT CHANGES IN
SOME OF THESE MEASURES AMONG OUR
COALITION MEMBERS, AND THAT
INCLUDES CHANGES IN
ORGANIZATIONAL CHARACTERISTICS,
CAPACITY BUILDING DOMAINS,
SUSTAINED IMPLEMENTATION
DOMAINS, PERCEIVED READINESS.
AND SO THE KINDS OF
ORGANIZATIONS THAT ARE
PARTICIPATING IN OUR COALITION
RELATED TO COVID-19 ARE, REACH
INCLUDES FAITH ORGANIZATION,
GENERAL SERVICE ORGANIZATIONS,
FOOD, SMALL BUSINESS, BLACK
GREEK ORGANIZATIONS, DAY CARE
CENTERS, EDUCATIONAL SYSTEMS,
HIGHER EDUCATION, HEALTH AND
HUMAN SERVICES, GOVERNMENT
AGENCIES, AND THEN WE HAVE THIS
HUGE CATEGORY OF OTHERS THAT
WE'RE GOING TO TRY TO TEASE OUT
IN THE FOLLOW-UP SURVEY.
WE ASKED A LOT OF QUESTIONS
ABOUT CAPACITY ISSUES SUCH AS,
YOU KNOW, HAS YOUR MISSION
CHANGED, AND WE SEE THAT 24%
SAID THEIR MISSION DID CHANGE
DURING COVID-19, 90% HAVE
POLICIES TO PROTECT, 92% SAID
THEY CHANGED POLICIES TO PROMOTE
AND SUPPORT COVID-19 PREVENTION
PROTECTION STRATEGIES.
78% HAD OFFERED SOME KIND OF
EDUCATIONAL WORKSHOP FOR ITS --
FOR THE EMPLOYEES, AND THEN
ABOUT 60% HAD ALSO OFFERED
WORKSHOPS FOR THEIR CLIENTS AS
WELL.
SOMETHING REALLY IMPORTANT TO
PAY ATTENTION TO IN TERMS OF
ORGANIZATIONAL CAPACITY, AND
THAT IS THAT THESE ORGANIZATIONS
EXPERIENCE ABOUT A THIRD LAYOFFS
THAT AFFECTED ABOUT A THIRD OF
THEIR POPULATION AND THEN ABOUT
25% OF EMPLOYEES LEFT BECAUSE OF
COVID-19.
SO HUGE WORKFORCE ATTRITION
ISSUES FOR RURAL ORGANIZATIONS
THAT ALREADY HAD LOW CAPACITY.
54% RECEIVED SOME KIND OF
OFFICIAL REPORT TO ADDRESS
COVID-19.
70% HAD TO REALLOCATE RESOURCES,
A THIRD ASSIGNED A CHAMPION TO
ASSIST WITH SOME OF THESE
EFFORTS.
WHEN WE ASKED THEM WHETHER OR
NOT THEY FELT THAT THEY HAD
SUFFICIENT RESOURCES TO ADDRESS
COVID-19 NEXT YEAR, ONLY 9%
STRONGLY AGREED THAT THEY DID.
41% FELT COVID RESTRAINED
RESOURCES IN THE NEXT YEAR, AND
OVERALL 60% SAID THE PANDEMIC
STRAINED THEIR RESEARCH, THEIR
RESOURCES.
EVEN THEY REPORTED ON FACTORS
SUCH AS HOW THE PANDEMIC HAS
IMPACTED THE POPULATIONS THAT
THEY SERVED IN THE FIRST YEAR OF
IT, 25% SAID THEIR POPULATIONS
THAT THEY SERVE INCREASED.
52% SAID THAT IN THE FIRST YEAR
OF THE PANDEMIC THEIR
POPULATIONS THAT THEY SERVED
ACTUALLY DECREASED, AND 19% SAID
THE POPULATIONS DID NOT CHANGE
AT ALL.
AND ASKING ABOUT THE
REPRESENTATIVES WHO ANSWERED
THESE QUESTIONS ABOUT PERCEIVED
TRUST IN THE VACCINE WE ASKED
THEM ABOUT PERCEIVED TRUST
RELATED TO WHAT THEY FELT THEIR
WORKERS THOUGHT AND WHAT THEY
THOUGHT THEIR CLIENTS THINK.
SO BASICALLY WHAT WE SEE HERE IS
THAT WORKERS TENDED TO HAVE A --
PERCEIVED WORKERS HAD A HIGHER
TRUST IN VACCINE COMPARED TO THE
VARIOUS CLIENTS.
AND SO WHAT DID WE DO?
IN TERMS OF TRYING TO EXTEND THE
REACH, I'VE GOT A FEW MINUTES
LEFT HERE, WE FOCUSED ON
DEVELOPING MATERIALS WITH INPUT
FROM OUR COALITIONS, AND WE
INCLUDED A CAMPAIGN WHICH WE
CALLED DOOR-TO-DOOR CAMPAIGN.
I'M GOING TO QUICKLY RUN THROUGH
HOW WE USED THESE COMMUNITY
REVIEW GROUPS TO GATHER
INFORMATION THAT INFORM THE
MESSAGES WE USE FOR OUR
DOOR-TO-DOOR CAMPAIGN.
HERE ARE QUALITATEIVE REVIEW
COMMENTS WITH AFRICAN AMERICANS
IN RURAL COUNTIES.
I WANT TO POINT TO ONE.
WE ASKED ABOUT WHETHER OR NOT
THEY WOULD ALLOW THEIR CHILD TO
GET A VACCINE, AND
OVERWHELMINGLY THE ANSWER WAS
NO.
AND THAT WAS ACROSS BOTH
COMMUNITY REVIEW GROUPS THAT WE
CONDUCTED.
SO THERE'S VERY LITTLE SUPPORT
FOR CHILDREN GETTING VACCINE,
THERE'S A HUGE FEAR OF
GOVERNMENT THAT ELISEO MENTIONED
EARLIER.
ONE OF THE COMMENTS IS WHY ARE
THEY PUSHING THIS THING ON US?
NOW THEY CARE ABOUT OUR HEALTH?
SUSPICIOUS YOU PUSH SOMETHING
GOOD FOR US WHEN WE ARE
MISTREATED IN THE HEALTH CARE
SYSTEM.
SO, WE DEVELOP MESSAGES FROM THE
COMMUNITY REVIEW GROUPS.
WE ASK FOR THE COALITION'S
FEEDBACK ON THOSE MESSAGES, THAT
THEN RESULTED IN DOOR HANGERS
THAT ARE BEING PASSED OUT
THROUGH OUR TOOLKITS TO
COMMUNITIES.
AND THIS IS JUST A PICTURE OF
SOME OF THE VOLUNTEERS IN THE
COMMUNITY WHO ARE ACTUALLY
PARTICIPATING IN THE DOOR TO
DOOR CAMPAIGN.
I WANT TO LEAVE YOU WITH FINAL
THOUGHTS ABOUT OUR REACH TO
RURAL COMMUNITIES, WHICH IS
WE'RE ENCOUNTERING ISSUES SUCH
AS HOW DO RURAL COMMUNITIES
ACTUALLY ACCESS HOME TEST KIT
THAT THEY NOT GET THROUGH THE
FEDERAL GOVERNMENT?
WHO HAS ACCESS TO AT LEAST ONE
N95 MASK WHEN THERE ARE NO
PHARMACIES, GROCERY STORES, OR
LOCATIONS IN THESE COMMUNITIES
WHERE THEY CAN ACTUALLY GO AND
GET AN N95 MASK?
SO WE HAVE NOW INCORPORATED THE
N95 MASK INTO THESE TOOL KITS
THAT WE HAVE BEEN SENDING
PEOPLE.
BUT WE'RE GRATEFUL FOR THE
FLEXIBILITY IN THE ARKANSAS CEAL
FUNDS TO ALLOW US TO ADAPT TO
WHAT WE'RE LEARNING THROUGH
COMMUNITY KNOWLEDGE ABOUT WHAT
THEY ARE ABLE TO ACCESS ON THE
GROUND LEVEL.
SO I'M GOING TO SKIP A FEW
SLIDES AND JUST WRAP UP HERE BY
JUST POINTING TO THE FACT THAT
IF WE WANT TO SAVE OUR
COMMUNITIES WE FIRST HAVE TO
RECOGNIZE THAT NOT EVERYONE
BENEFITS EQUALLY FROM COMMUNITY
AND POLICY INTERVENTIONS, AND
THAT WE HAVE TO HAVE SOME
FLEXIBILITY IN OUR FUNDING
MECHANISMS THAT ALLOW US TO MAKE
CHANGES MID-COURSE TO REACH
THESE POPULATION GROUPS, WHETHER
IT RELATES TO CHRONIC OR
INFECTIOUS DISEASE DISPARITIES.
AND SO WHEN WE TALK ABOUT WHAT
ARE OUR RECOMMENDATIONS, I
MENTIONED I ONLY HAVE ONE REAL
RECOMMENDATION.
AND THAT IS WHEN PEOPLE ARE
MAKING THE CALL TO FIX THE
SITUATION, SCHOOLS, INCOME
INEQUALITY, AND HEALTH CARE
ACCESS, WE OFTEN ARE FACED WITH
THE RESPONSE, SORRY, FOLKS, THAT
CAN'T BE DONE.
WE'RE ASKING PEOPLE TO ACTUALLY
CHANGE THAT, AS QUICKLY AS WE
COULD CONSTRUCT AND DECONSTRUCT
WALL STREET, BLACK WALL STREET
OVERNIGHT, SOCIAL JUSTICE
APPROACH CALLS FOR US TO REJECT
PROCRASTINATING LOOP OF
OPPRESSION INTO QUICKLY REBUILD
INSTITUTIONS TO ADDRESS
CONTEXTUAL FACTORS THAT KEEP
COMMUNITIES THAT LAG BEHIND.
SO I'LL STOP THERE.
AND SEE IF THERE ARE ANY
QUESTIONS.
ELISEO, I DON'T KNOW IF THERE'S
TIME FOR THAT.
THANK YOU.
>> THANK YOU SO MUCH, PEBBLES.
IT'S REALLY INSPIRING TO HEAR
YOU AND TO SEE THAT YOU'VE
REALLY FOUND A PLACE IN ARKANSAS
LEARNING ABOUT THE DELTA, WHICH
I THINK -- WELL, I ALREADY HAD
KNOWN ABOUT THE DELTA IN
ARKANSAS FROM PRIOR
INVESTIGATORS, SO I THINK THAT'S
REALLY WONDERFUL THAT YOU'RE
ABLE TO BE THERE AND REALLY
MOTIVATED TO DO SOMETHING ABOUT
IT.
I'M JUST GOING TO READ THE
QUESTION FROM CARMEN REGARDING
DO YOU THINK A PARTIAL BAN ON
SMOKING IS RELATED TO ACCEPTANCE
OR TOLERANCE OF SPECIFIC
PRODUCTS?
E-CIGARETTE USE IS EXTREMELY LOW
BUT DO THEY ACCEPT SMOKING?
IS IT SOCIALLY ACCEPTABLE?
IS THAT --
>> YEAH, I MEAN -- WELL, THAT IS
IT BECAUSE SMOKING IS SO HIGH.
IT IS A SOCIALLY ACCEPTABLE NORM
HERE.
BUT IT'S ALSO THAT ARKANSAS WAY
IS, YOU KNOW, I HAVE THE RIGHT,
IT'S MY PERSONAL RIGHT.
>> UH-HUH.
>> AND PERSONAL RIGHT IS A VERY
STRONG ISSUE HERE.
IT'S NOT JUST WITH SMOKING BUT
IT'S ALSO WITH MASK WEARING AND
GETTING A VACCINATION AS WELL.
SO WE SEE THAT PERSONAL RIGHT
THEME THAT CUTS ACROSS, YOU
KNOW, AREAS OF CHRONIC DISEASE
PREVENTION AS WELL AS INFECTIOUS
DISEASE PREVENTION.
>> AND I'LL CALL ON YOU, KEN, IF
YOU PROMISE TO BE VERY BRIEF.
>> PROMISE.
>> GO AHEAD.
>> PEBBLES, I COULD SPEND HOURS
DECONSTRUCTING THOSE TWO GREAT
TALKS, BOTH COVID AND SMOKING.
I WANT TO ASK ABOUT RURAL
SMOKING BECAUSE WE'RE EMBARKING
ON SOME OF THAT NOW.
YOU KNOW BETTER THAN ANYONE
NATIONALLY THERE'S PATTERNS, YOU
MENTIONED MENTHOL BUT THEY START
ONE OR TWO YEARS LATER, MORE
LIKELY TO BE DAILY, OCCASIONAL
LIGHT SMOKERS, LESS LIKELY TO
USE MEDS, LESS LIKELY TO RESPOND
TO MRI, HOW MUCH DOES RURAL
BLACK SMOKING MIRROR THE
NATIONAL BLACK SMOKER OR IS IT A
DIFFERENT PHENOMENON?
>> IT ACTUALLY MIRRORS FAIRLY
WELL.
YOU KNOW, THE MENTHOL SMOKING
RATE, ALTHOUGH WE SEE 70% OF OUR
SMOKERS ARE DAILY SMOKERS, ON
AVERAGE THEY SMOKE ABOUT 10 TO
12 CIGARETTES PER DAY.
AND SO THERE ARE A LOT OF
SIMILARITIES TO WHAT YOU SEE IN
GENERAL AMONG AFRICAN AMERICANS
RELATED TO THEIR SMOKING RATES.
>> THANKS.
>> WE'VE NOT GIVEN UP ON A BAN
ON MENTHOL.
LET'S KEEP THIS.
ALL RIGHT.
SO THANK YOU VERY MUCH AGAIN,
PEBBLES, FOR THAT WONDERFUL
PRESENTATION.
IT'S GREAT TO SEE ALL THE WORK
YOU'RE DOING.
NOW WE'RE TURNING TO NATHAN
STINSON TO PRESENT THE TRIENNIAL
INCLUSION REPORT.
NATHAN IS A FAMILY PHYSICIAN,
ALSO HAS A Ph.D. IN PHYSIOLOGY
AND HAS BEEN AT NIMHD FOR 14, 15
YEARS.
HE IS ONE OF OUR LEADERS IN THE
INSTITUTE AND IS A DIRECTOR OF
THE DIVISION OF COMMUNITY HEALTH
AND POPULATION SCIENCE.
NATE?
THERE HE IS.
>> YEAH.
THANK YOU VERY MUCH, ELISEO.
THANK YOU VERY MUCH, JUAN.
I'M GOING TO PRESENT THE
TRIENNIAL REPORT ON INCLUSION IN
CLINICAL RESEARCH FOR NIMHD.
IT COVERS THE YEARS 2019, 2020,
AND 2021.
NEXT SLIDE.
A LITTLE BIT ABOUT THE HISTORY.
THE PURPOSE OF THE NIH INCLUSION
POLICIES, TO ASSURE THAT THE
DISTRIBUTION OF PARTICIPANTS BY
SEX/GENDER, RACE, ETHNICITY, AND
AGE, REFLECT THE POPULATIONS
NEEDED TO ACCOMPLISH THE
SCIENTIFIC GOALS, RATHER THAN
JUST A LISTING OF INDIVIDUALS
BASED ON THESE PARTICULAR
CHARACTERISTICS.
SO YOU SHOULD DESIGN YOUR STUDY,
YOU KNOW, AND PLAN FOR
PARTICIPANTS THAT ALLOW YOU TO
ACCOMPLISH THE RESEARCH INTEREST
THAT YOU HAVE.
INCLUSION SHOULD BE
SCIENTIFICALLY APPROPRIATE AND
REALISTIC, AS I MENTIONED.
WE NEED TO CONSIDER EXTERNAL
VALIDITY AND EVERY STUDY DOES
NOT NECESSARILY NEED TO INCLUDE
EVERY GROUP.
NEXT SLIDES.
A LITTLE MORE ABOUT THE HISTORY,
AND I'LL START OFF REALLY
TALKING ABOUT THE INCLUSION OF
WOMEN AND MINORITIES AT NIH
CLINICAL RESEARCH.
THE NIH REVITALIZATION ACT OF
1993 REALLY REQUIRED WOMEN AND
RACIAL AND ETHNIC MINORITIES TO
BE INCLUDED IN NIH-SUPPORTED
CLINICAL RESEARCH IN A MANNER
THAT REALLY WAS APPROPRIATE TO
THE SCIENCE OF THE STUDY UNLESS
THERE WAS SOME COMPELLING REASON
THAT THAT WAS NOT PRACTICAL.
AND ALSO PHASE 3 CLINICAL TRIALS
BE DESIGNED TO PRODUCE ACCURATE
ESTIMATES OF DIFFERENCES IN
OUTCOMES BY SEX/GENDER AND
RACE/ETHNICITY.
SO THERE NEEDED TO BE A PLAN FOR
THEIR ANALYSIS OF THE DATA ALONG
THOSE CHARACTERISTICS.
NEXT SLIDE.
THERE ALSO WAS AN INTEREST IN
INCREASING TRANSPARENCY AND
EXPANDING INCLUSION OF
PARTICIPANTS ACROSS THE
LIFESPAN.
SO THE 20th CENTURY CURES ACT,
WHICH WAS -- 21ST CENTURY CURES
ACT ENACTED IN 2016 PHASE 3
CLINICAL TRIALS REPORT RESULTS
VALID ANALYSIS IN
clinicaltrials.gov, AND
APPLICABLE, YOU KNOW, CLINICAL
TRIALS IS A VERY SPECIFIC TERM
THAT RELATES TO REGULATIONS THAT
WERE WITH THE FOOD AND DRUG
ADMINISTRATION.
THE CURES ACT ALSO REQUIRES
PUBLISHING SEX/GENDER
RACE/ETHNICITY INCLUSION DATA IN
THE NIH RESEARCH CONDITION AND
DISEASE CLASSIFICATION SYSTEM
THAT WE CALL IT RCDC WHERE NIH
REPORTS ON THE DIFFERENT
CATEGORIES AND EXPENDITURES AT
NIH.
AND REVISION TO INCLUSION OF
CHILDREN POLICY TO ENSURE
INDIVIDUALS ARE INCLUDED IN
CLINICAL RESEARCH IN A MANNER,
AGAIN, APPROPRIATE TO SCIENTIFIC
QUESTIONS BEING ASKED IN THAT
STUDY AND THAT THEY SHOULD SPAN
THE LIFESPAN, IF THAT'S
APPROPRIATE.
NEXT SLIDE.
FROM AN OPERATIONAL POINT OF
VIEW, THE INCLUSION ACROSS THE
LIFESPAN POLICY REALLY REQUIRED,
YOU KNOW, SEVERAL THINGS.
YOU KNOW, IT REQUIRED ALL
INDIVIDUALS OF ALL AGES TO BE
INCLUDED IN HUMAN SUBJECTS
RESEARCH UNLESS THERE WAS
SCIENTIFIC OR ETHICAL REASON NOT
TO DO SO.
APPLICATIONS, PROPOSALS, OTHER
TYPE OF SOLICITATIONS NEEDED TO
ADDRESS THIS PARTICULAR ISSUE
WITHIN A HUMAN SUBJECTS AND
CLINICAL TRIAL INFORMATION, AND
THE INCLUSION ENROLLMENT REPORTS
THAT ARE PART OF THE APPLICATION
PROCESS FOR NIH GRANTS AND
COOPERATIVE AGREEMENTS.
IT ALSO REQUIRES SUBMISSION OF
INDIVIDUAL LEVEL DATA ON
PARTICIPANT AGE AT ENROLLMENT IN
THE ANNUAL PROGRESS REPORTS.
NEXT SLIDE.
THE CURES ACT ALSO REQUIRED THAT
NIH PREPARE A TRIENNIAL
INCLUSION REPORT.
THESE REPORTS ARE INCLUDED IN
THE NIH DIRECTOR'S REPORT TO
CONGRESS.
AS I MENTIONED EARLIER, THIS
CURRENT REPORT IS INCLUSIVE OF
2019, 2020, AND 2021.
NEXT SLIDE.
JUST A COUPLE OF DEFINITIONS,
WHICH I'M SURE ALL OF YOU ARE
AWARE OF.
FIRST ONE IS A CLINICAL
RESEARCH, NIH DEFINES IT AS
PATIENT-ORIENTED RESEARCH.
RESEARCH CONDUCTED WITH HUMAN
SUBJECTS OR MATERIALS OF HUMAN
ORIGIN SUCH AS TISSUE SPECIMENS,
FOR WHICH AN INVESTIGATOR
DIRECTLY INTERACTS WITH HUMAN
SUBJECTS.
IT INCLUDES MECHANISMS OF HUMAN
DISEASE, SORRY THERE'S A TYPO
THERE, MECHANISM OF HUMAN
DISEASE, THERAPEUTIC
INTERVENTIONS, CLINICAL TRIALS,
DEVELOPMENT OF NEW TECHNOLOGIES.
IT INCLUDES EPIDEMIOLOGICAL AND
BEHAVIORAL STUDIES, OUTCOMES
RESEARCH, AND HEALTH SERVICES
RESEARCH.
EXCLUDED ARE IN VITRO STUDIES
THAT UTILIZE HUMAN TISSUES THAT
CANNOT BE LINKED TO LIVING
INDIVIDUALS.
NEXT SLIDE.
A COUPLE OTHER DEFINITIONS THAT
ARE PERTINENT TO THIS REPORT,
ONE IS NIH DEFINED PHASE 3
CLINICAL TRIALS, STUDIES THAT
EVALUATE INTERVENTION IN LARGE
GROUPS OF INDIVIDUALS BY
COMPARING THE INTERVENTION TO
EITHER A STANDARD OR OTHER
EXPERIMENTAL INTERVENTIONS.
WE ARE MOST FAMILIAR WITH HAVING
TO DO WITH DRUG OR DEVICE,
BEHAVIORAL INTERVENTIONS, AND
VALID ANALYSIS WHERE
INVESTIGATORS GENERALLY STRATIFY
THE OUTCOMES BASED BY SEX,
GENDER, OR RACE AND ETHNICITY.
NEXT SLIDE.
I JUST WANT TO TALK ABOUT THE
RESPONSIBILITIES SO YOU GET A
SENSE OF THE ROLES AND
RESPONSIBILITIES, THE DIFFERENT
COMPONENTS AS NIH AS WELL AS
APPLICANTS FOR GRANT OR
COOPERATIVE AGREEMENT, SUPPORT
FROM NIH, AS RELATES TO
INCLUSION.
NIH HAS RESPONSIBILITY ENSURING
THERE'S COMPLIANCE, YOU KNOW, TO
THE POLICIES, RULES, AND
REGULATIONS THROUGH TRAINING OF
THE NIH STAFF, INVESTIGATORS IN
EXTRAMURAL AND INTRAMURAL
COMMUNITY AND THE PEER REVIEWERS
OF THE APPLICATIONS.
AND ULTIMATELY TO PROVIDE
OVERSIGHT OF THE FUNDED PROJECTS
AND MONITOR, YOU KNOW, THE
PROGRESS THAT IS BEING MADE FOR
RECRUITMENT OF RESEARCH
PARTICIPANTS.
THE APPLICANTS, YOU KNOW, ARE
REQUIRED TO PROVIDE AN INCLUSION
PLAN WITH PLANNED ENROLLMENT
TABLES WITH PROPOSED
DISTRIBUTION ACROSS SEX AND
GENDER, RACE AND ETHNICITY.
AND FOR PHASE 3, APPLICANTS MUST
PROVIDE DESCRIPTION OF THE PLANS
FOR THEIR VALID ANALYSIS AND
EVALUATION OF POTENTIAL GROUP
DIFFERENCES AMONG SEX AND
GENDER, RACE AND ETHNICITY.
AND TO PROVIDE AT LEAST YEARLY A
CUMULATIVE ENROLLMENT DATA, A
FEW YEARS AGO NIH CHANGED THEIR
PROCEDURE WHERE P.I.s COULD
UPDATE THOSE ENROLLMENT FORMS IN
A MORE REALTIME MANNER, WHICH I
THINK GREATLY ENHANCED OUR
ABILITY TO MONITOR ENROLLMENT IN
CLINICAL TRIALS.
NEXT SLIDE PLEASE.
THIS IS A FULL AND BUSY SLIDE,
BUT I WANTED TO SQUEEZE
EVERYTHING JUST ON ONE SLIDE
INSTEAD OF THREE.
OUTLINES RESPONSIBILITIES THAT
PROGRAM STAFF, PEER REVIEWERS
AND GRANTS MANAGEMENT HAVE
RELATED TO INCLUSION.
AND VERY QUICKLY, ISSUES AROUND
INCLUSION, YOU KNOW, ARE ALWAYS
AT THE FOREFRONT WHEN FUNDING
OPPORTUNITIES ARE WRITTEN AND
WRITTEN IN A WAY TO ASSURE THAT
APPLICANTS PROPOSED IN THEIR
APPLICATIONS RECRUITMENT THAT IS
RELEVANT TO THE PARTICULAR
DISEASE OR CONDITION THAT WILL
BE STUDIED, AND TO SCIENTIFIC
GOALS OF THE WORK, YOU KNOW,
PROPOSED.
PROGRAM STAFF REVIEWS
INFORMATION, THAT IS WITHIN
APPLICATIONS, ENSURE COMPLIANCE
WITH INCLUSION POLICY, AND
SHOULD THE REVIEW PANEL HAVE ANY
PARTICULAR CONCERNS AROUND
INCLUSION TO WORK WITH THE P.I.
TO MAKE SURE THAT ANY OF THOSE
CONCERNS ARE RESOLVED.
AND AFTER AWARDS ARE MADE,
MONITOR THE PROGRESS IN THE
RECRUITMENT TO ENSURE THAT THE
PLANNED ENROLLMENT GOALS ARE
MET, YOU KNOW, FOR THE
PARTICULAR STUDY.
REVIEWERS, YOU KNOW, EVALUATE
THE ADEQUACY OF PLANS TO INCLUDE
BOTH SEX AND GENDER, MINORITIES
AND CHILDREN, IS APPROPRIATE TO
SCIENTIFIC GOAL, WEIGHT THE PLAN
AS ACCEPTABLE OR UNACCEPTABLE.
AND THE RATING, YOU KNOW, MUST
FACTOR INTO THE OVERALL
EVALUATION OR SCORE OF
APPLICATION'S SCIENTIFIC AND
TECHNICAL MERIT.
GRANTS MANAGEMENT ENSURES
APPROPRIATE TERMS AND CONDITIONS
ARE INCLUDED IN NOTICE OF AWARD
ABOUT INCLUSION AND ENSURES THE
INFORMATION IS DOCUMENTED IN THE
OFFICIAL GRANT FILE.
NEXT SLIDE.
OKAY, SO THAT'S KIND OF THE
OVERVIEW AND BACKGROUND.
I WANT TO GO OVER SOME OF THE
DATA THAT HAS BEEN COMPILED
REGARDING INCLUSION IN
NIH-SUPPORTED PROJECTS OVER THE
THREE-YEAR PERIOD.
NEXT SLIDE.
THIS CHART GIVES A BREAKDOWN OF
THE DIFFERENT INCLUSION
ENROLLMENT RECORD, YOU KNOW,
OVER THE, YOU KNOW, THREE-YEAR
PERIOD.
THE TOP CHART IS THE TOTAL
INCLUSION RECORDS FOR THE
INSTITUTE.
YOU CAN SEE IN 2019, 2020, AND
2021 IT GOES FROM, YOU KNOW, 402
TO 690, AND THE NUMBER OF
INCLUSION RECORDS CANNOT BE
VARIABLE, A SINGLE PROJECT CAN
HAVE MULTIPLE INCLUSION RECORDS
DEPENDING ON, YOU KNOW,
DIFFERENT COMPONENTS OF THAT,
THAT RESEARCH PROJECT.
THE LOWER CHART HAS TO DO WITH
PHASE 3 CLINICAL TRIALS.
YOU CAN SEE BY THIS CHART NIMHD
DOES NOT REALLY SUPPORT A LOT OF
PHASE 3 CLINICAL TRIALS, IN THE
FULL DISCLOSURE THE NIH SYSTEM
IS RELATIVELY CUMBERSOME IN
TRYING TO, YOU KNOW, CORRECT
SOME OF THE MISLABELING THAT
OCCURS OR DISCREPANCIES THAT MAY
OCCUR BETWEEN AN APPLICANT
INDICATING IN THEIR APPLICATION
THAT IS A PHASE 3 CLINICAL
TRIAL, WITH A REALITY IT'S NOT A
PHASE 3 CLINICAL TRIAL.
AND SO EFFORTS ARE MADE
CONTINUALLY TO TRY TO DISSOLVE
ANY OF THOSE PARTICULAR
DISCREPANCIES AND MAKE SURE THAT
THE INFORMATION AROUND CLINICAL
TRIALS IS AS ACCURATE AS
POSSIBLE.
AND THIS IS AN ISSUE ACROSS NIH
AS A WHOLE, NOT JUST WITH OUR
INSTITUTE AND OER IS TAKING SOME
STEPS TO TRY TO DETERMINE, YOU
KNOW, ADDITIONAL WAYS TO ENSURE,
YOU KNOW, THE ISSUE AROUND PHASE
3 CLINICAL TRIALS ENROLLMENT IS
VERY ACCURATE BECAUSE ACCORDING
TO DISCUSSIONS WITH THEM THIS IS
AN AREA THAT OUR ELECTED
OFFICIALS, THAT CONGRESS, YOU
KNOW, HAVE A KEEN INTEREST IN.
SO THE MAIN POINT HERE IS THAT
JUST DUE TO THE NATURE, YOU
KNOW, OF THE TYPE OF RESEARCH
THAT WE DO WE DON'T RUN A LOT
OF, YOU KNOW, VACCINE TRIALS,
DRUG TRIALS, MEDICAL DEVICES
TRIALS, VERY LIMITED NUMBER,
THAT WOULD MEET THE CRITERIA OF
PHASE 3 CLINICAL TRIALS AS
DEFINED BY NIH.
NEXT SLIDE.
I'M GOING TO TALK ABOUT
INCLUSION OF SEX/GENDER IN OUR
RESEARCH PROJECTS.
NEXT SLIDE.
OKAY, IN MANY SLIDES I'M GOING
TO GIVE KIND OF THE OVERALL
SLICE OF NIH AS A WHOLE AND THEN
TALK ABOUT NIMHD, SO YOU CAN
KIND OF SEE COMPARISON BETWEEN
NIH OVERALL AND ALSO WHAT IS
WITHIN OUR INSTITUTE ITSELF.
MANY OF THESE SLIDES WILL HAVE
TOTAL NUMBERS, YOU KNOW,
ASSOCIATED WITH THEM.
I DON'T THINK, YOU KNOW, IN
REALITY THAT IS THAT
INFORMATIVE.
I THINK THAT PERCENTAGE
DIFFERENCES MAKES -- IS
SOMETHING THAT WILL ILLUSTRATE
DIFFERENCES PROBABLY TO A
GREATER DEGREE.
BUT IN THIS, YOU KNOW, SLIDE
HERE YOU CAN BASICALLY SEE AT
NIH OVERALL, YOU KNOW,
ESSENTIALLY, YOU KNOW, THE
PERCENTAGE OF PARTICIPANTS IN
THE CLINICAL RESEARCH IS
ANYWHERE FROM 50 TO 60% FEMALE,
AND 40 TO 50% MALE.
THERE'S A CERTAIN RELATIVELY
SMALL SLICE, UP TO 5%, THAT IS
NOT REPORTED, OR NONE.
NEXT SLIDE.
THIS IS, YOU KNOW, NIMHD'S
CLINICAL RESEARCH ENROLLMENT BY
SEX AND GENDER, FOR THOSE YEARS.
AND IT'S PRETTY MUCH, YOU KNOW,
MIRRORS NIH AS A WHOLE EXCEPT A
RELATIVELY SMALL SLICE OF, YOU
KNOW, UNKNOWN AND NOT REPORTED.
NEXT SLIDE PLEASE.
I WANT TO TALK ABOUT INCLUSION
OF RACIAL AND ETHNIC, YOU KNOW, MINORITIES .
NEXT SLIDE.
THIS IS, YOU KNOW, NIH AS A
WHOLE.
THIS IS JUST TOTAL NUMBER.
SO GO TO THE NEXT SLIDE.
AGAIN, THIS IS JUST TOTAL
NUMBER.
THERE ARE SLIDES THAT GIVE A
PERCENTAGE.
BUT I WANTED TO PAUSE FOR A
MOMENT AND JUST TALK ABOUT THE
CHANGE FROM 2019, 2020, AND
2021.
YOU CAN SEE THAT, YOU KNOW,
THERE IS A DECREASE OVER THOSE
THREE YEARS.
A SIGNIFICANT DECREASE IN THE
NUMBER OF INDIVIDUALS THAT ARE
ENROLLED IN CLINICAL RESEARCH AT
NIMHD.
AND SOME OF THAT IS RELATED
TO -- A LOT ACTUALLY IS RELATED
TO SEVERAL RELATIVELY LARGE
STUDIES THAT HAD -- THAT WERE
STILL ACTIVE IN 2019, THAT
PHASED OUT, YOU KNOW, FROM 2020
TO 2021.
AND THERE WERE -- WE HAD SOME
LARGE STUDIES HAVING TO DO WITH
INDIVIDUALS, WITH CHRONIC KIDNEY
DISEASE, AND ASSOCIATION WITH
DIALYSIS, AS WELL AS RELATIVELY
LARGE STUDY THAT HAD TO DO WITH
CARDIOVASCULAR HEALTH AND STROKE
THAT ACTUALLY CONTRIBUTED A FAIR
NUMBER OF ENROLLEES, YOU KNOW,
IN 2019.
COVID MAY HAVE ALSO PLAYED, YOU
KNOW, A ROLE AS WELL, AS FAR AS
HAVING SOMEWHAT OF A CHILLING
EFFECT INITIALLY OF IN-PERSON
ENROLLMENT THAT WAS OCCURRING IN
2020.
AND ALSO THERE WERE MANY
PROJECTS WHICH, YOU KNOW, WERE
REQUIRED TO REALLY, YOU KNOW,
SHIFT OR RESIGN OR MODIFY, YOU
KNOW, THEIR RECRUITMENT
ACTIVITIES IN A WAY OF
IMPLEMENTING THE DIFFERENT
METHODOLOGIES BASICALLY, YOU
KNOW, PROPOSED INITIALLY IN
THEIR APPLICATION.
SO THIS NEXT FEW YEARS IF WE
EVER GET THROUGH COVID-19 AND,
YOU KNOW, CONCERNS ABOUT, YOU
KNOW, INDIVIDUAL OR GROUP
GATHERINGS WE'LL SEE HOW THE
ENROLLMENT LOOKS.
NEXT SLIDE IS PERCENTAGES.
HERE IS NIH AS A WHOLE IN THE
PERCENTAGES BY RACE.
YOU CAN SEE OVER, YOU KNOW, THE
THREE YEARS THE PERCENTAGES ARE,
YOU KNOW, LOOK FAIRLY STABLE
FROM YEAR TO YEAR.
AND SOME OF THAT JUST MAY BE
RELATED TO, YOU KNOW, THE LAW
OF, YOU KNOW, LARGE NUMBERS, YOU
KNOW, BASED ON, YOU KNOW, THE
TOTAL NUMBER OF INDIVIDUALS THAT
ARE RECRUITED AND PARTICIPATE IN
NIH CLINICAL RESEARCH PROJECTS.
LET'S GO TO THE NEXT SLIDE,
WHICH SHOULD BE NIMHD -- I HAVE
A GRAPH HERE BEFORE WE LOOK AT
THE BAR CHART OF PERCENTAGES.
JUST A GRAPH LOOKING AT THE
OVERALL MAKEUP OF RACIAL AND
ETHNIC MINORITY ENROLLEES IN,
YOU KNOW, IN CLINICAL RESEARCH
OVER THE, YOU KNOW, OVER THE
PAST THREE YEARS FROM 64.8 TO
RECENTLY IN 2021, 70.6.
IF YOU LOOK AT THE CHARGE YOU
CAN SEE HOW, YOU KNOW, THE TOTAL
ENROLLEES, YOU KNOW,
SIGNIFICANTLY, YOU KNOW, DROPPED
OFF, YOU KNOW, OVER THAT
THREE-YEAR PERIOD.
I THINK THE NEXT CHART SHOULD BE
A PERCENTAGE CHART FOR OUR
INSTITUTE.
SO HERE'S THE CLINICAL RESEARCH
ENROLLED BY RACE FOR NIMHD.
YOU KNOW, AND IT DOES VARY
SOMEWHAT FROM, YOU KNOW, OVER
THE THREE YEARS.
BUT WE JUST LOOK AT 2021, AND IT
REALLY GOES FROM, YOU KNOW, THE
LEGEND ON THE RIGHT CORRESPONDS
TO THE COLORS FROM, YOU KNOW,
TOP, YOU KNOW, TOP TO BOTTOM.
AND YOU CAN, YOU KNOW, SEE THE
DIFFERENT PERCENTAGES FOR EACH
OF THE CATEGORIES THERE FOR
NIMHD, AND I JUST WANTED TO
MENTION THE CORRESPONDENTING
CATEGORIES FOR NIH AS A WHOLE,
THAT WAS ON THE PREVIOUS BAR
CHART.
THEY HAD AS UNKNOWN OR
UNREPORTED 13.6 SO NIH-WIDE AND
ALSO IN OUR INSTITUTE RELATIVELY
LARGE NUMBER WITHIN THAT
PARTICULAR CATEGORY, ALTHOUGH IT
HAS REALLY VARIED WIDELY ACROSS
THE THREE YEARS FOR US.
THE WHITE CATEGORIZATION FOR NIH
AS A WHOLE WAS 53.4.
THE NATIVE HAWAIIAN WAS NOT
DETECTABLE.
AND WHILE WE HAD 1.6, THE
AFRICAN AMERICAN WAS 17.7 FOR
NIH AS A WHOLE VERSUS OURS,
29.6.
ASIAN FOR NIH AS A WHOLE WAS
12%.
AND AMERICAN INDIAN AND ALASKA
NATIVE WAS 0.7 OVERALL FOR NIH
AND WE HAD THREE.
NEXT SLIDE.
THIS IS JUST A PIE GRAPH OF THE
INFORMATION THAT I JUST
MENTIONED IN THE PREVIOUS SLIDE.
AND, YOU KNOW, NOT TO ANYONE'S
SURPRISE, YOU KNOW, IN THESE
RACIAL CATEGORIES, OUR INSTITUTE
HAS A HIGHER ENROLLMENT OF THESE
CATEGORIES IN OUR CLINICAL
RESEARCH THAN NIH AS A WHOLE.
NEXT SLIDE.
SO THIS IS NIH CLINICAL RESEARCH
ENROLLMENT BY ETHNICITY.
NEXT SLIDE.
THIS IS JUST TOTAL NUMBERS.
THAT WAS NIH AS A WHOLE.
THIS IS NIMHD, JUST TOTAL
NUMBERS.
NEXT SLIDE.
SO HERE'S A PIE GRAPH OF THE,
YOU KNOW, PERCENTAGES OF NIH,
YOU KNOW, AS A WHOLE OVER THE
THREE YEARS.
AND YOU CAN SEE LARGEST GROUP IS
NOT HISPANIC OR LATINO.
YOU CAN SEE THE HISPANIC OR
LATINO PERCENTAGES IS PRETTY
STABLE AROUND, YOU KNOW, 10 TO
11%.
ALSO THE UNKNOWN AND NOT
REPORTED IS RELATIVELY LARGE AND
IS, YOU KNOW, ESSENTIALLY EQUAL
TO THE HISPANIC/LATINO
ENROLLMENT IN THE CLINICAL RESEARCH.
NEXT SLIDE.
OKAY.
THIS IS NIMHD'S ENROLLMENT BY
ETHNICITY OVER THOSE THREE
YEARS.
I WANT TO REALLY FOCUS THE
ATTENTION ON 2020 AND 2021,
WHERE THE ENROLLMENT OF
HISPANIC/LATINO WAS 18%, AND
27.6% RESPECTIVELY.
AND IN COMPARISON TO NIH AS A
WHOLE, THAT REPRESENTS SOMEWHERE
CLOSE TO TWO TO THREE TIMES, YOU
KNOW, WHAT NIH AS A WHOLE
ENROLLED OVER THOSE YEARS.
NEXT SLIDE.
JUST A COUPLE SLIDES THAT, YOU
KNOW, ARE REQUIRED TO BE PART OF
THE PRESENTATION THAT REALLY
TALK ABOUT, YOU KNOW, ENROLLMENT
IN U.S. ONLY, YOU KNOW, PROJECT.
YOU CAN SEE HERE THIS IS NIH
U.S. ONLY CLINICAL RESEARCH
ENROLLMENT BY ETHNICITY, VERY
SIMILAR TO THE OVERALL NIH.
NEXT SLIDE.
AND THIS IS, YOU KNOW, NIMHD
U.S. ONLY.
AND IT LOOKS ESSENTIALLY EXACTLY
LIKE THE OTHER ONE, ESPECIALLY,
YOU KNOW, SINCE, YOU KNOW,
ALMOST ALL OF OUR ENROLLMENT
IS -- ARE REALLY BASED ON
DOMESTIC PROJECTS.
NEXT SLIDE.
I WANT TO SLOW UP A COUPLE
CHARTS EVEN THOUGH I'VE
MENTIONED THAT NIMHD REALLY DOES
NOT DO MUCH IN PHASE 3 CLINICAL
TRIAL, JUST TO HAVE AN
OPPORTUNITY TO GIVE THE COUNCIL
A LITTLE FLAVOR OF, YOU KNOW,
NIH AS A WHOLE, YOU KNOW,
ENROLLMENT WITH PHASE 3 CLINICAL
TRIAL.
AND HERE AGAIN THE LEGEND, YOU
KNOW, MATCHES WITH THE COLOR
CODING, YOU KNOW, TO ITS LEFT.
AND YOU CAN SEE THAT A LITTLE
MORE THAN HALF OF THE
PARTICIPANTS IN PHASE 3 CLINICAL
TRIALS ARE WHITE.
I'M JUST LOOKING AT 2021 RIGHT
NOW.
SIMILAR TYPE OF, YOU KNOW,
PATTERN ACROSS WITH SOME
VARIATION AS YOU CAN SEE FOR
2020.
AND 20 TO 21% FOR AFRICAN
AMERICANS AND ABOUT 18% FOR
ASIANS, AND MUCH LOWER FOR
OBVIOUSLY THE NATIVE HAWAIIAN
AND PACIFIC ISLANDER AND
AMERICAN INDIAN POPULATIONS.
NEXT SLIDE PLEASE.
AND LET'S GO TO THE NEXT SLIDE
PLEASE.
AGAIN, THIS IS -- THIS GOES BACK
AGAIN TO WHAT I MENTIONED
EARLIER ABOUT NIMHD AND PHASE 3
CLINICAL TRIALS ENROLLMENT OVER
THESE PARTICULAR YEAR, VERY
LITTLE, YOU KNOW, ACTIVITY.
IT'S NOT A SIGNIFICANT PART AT
ALL OF OUR PORTFOLIO.
NEXT SLIDE.
BUT BEFORE I TALK ABOUT
INCLUSION, I WANT TO AT LEAST
MENTION A COUPLE OF LIMITATIONS
IN INTERPRETATION, YOU KNOW, OF
THIS INCLUSION DATA BY RACE AND
HIT.
THEY ARE AGGREGATE BUT THE
APPROPRIATE DESIGN AND WHAT THAT
ENROLLMENT SHOULD BE IS REALLY
STUDY SPECIFIC.
YOU KNOW, THE -- ALSO THE RACIAL
AND ETHNIC DISTRIBUTION OF
ENROLLMENT IS REALLY NOT -- HAS
NOT REALLY BEEN COMPARED TO WHAT
HAS BEEN DEEMED AS
SCIENTIFICALLY APPROPRIATE, YOU
KNOW, BY, YOU KNOW, BY THE
REVIEW PANEL, WHEN THEY, YOU
KNOW, HAVE THEIR DISCUSSION AND
MAKE AN ASSESSMENT OF THE
SCIENTIFIC AND TECHNICAL MERITS
OF THAT APPLICATION.
ALSO, THE INCLUSION ENROLLMENT
REPORTS ARE NOT DISAGGREGATED BY
RACE OR ETHNICITY SO IT'S
UNCLEAR WHETHER OR NOT RACIAL
AND ETHNIC MINORITY ENROLLMENT
IS CONCENTRATED, YOU KNOW, IN,
YOU KNOW, A FEW VERY SPECIFIC
PROJECTS OR BROADLY DISTRIBUTED
ACROSS, YOU KNOW, THE PORTFOLIO
AS A WHOLE.
SO A COUPLE THINGS TO MENTION
AS, YOU KNOW, LIMITATIONS, AS WE
INTERPRET THE DATA, AND WHEN I
GET TO THE END I'LL TALK A
LITTLE BIT ABOUT, YOU KNOW, KIND
OF THE DIRECTIONS I THINK -- A
COUPLE DIRECTIONS WE SHOULD GO
AS WE TRY TO FIND BETTER WAYS TO
UNDERSTAND THE MEANING, YOU
KNOW, OF THIS DATA THAT WE
GATHER AROUND INCLUSION.
NEXT SLIDE.
AS MENTIONED ONE OF THE THINGS
THAT THE CURES ACT DID IS
REALLY, YOU KNOW, REQUIRED NIH
TO REALLY THINK ABOUT THEIR
RESEARCH PROJECTS AND
PARTICIPANTS ACROSS THE, YOU
KNOW, ACROSS THE FULL LIFESPAN.
AND FY 21 IS THE FIRST YEAR THAT
THIS INFORMATION IS REALLY
BEING, YOU KNOW, INCLUDED IN THE
REPORTING, AND THE DATA THAT'S
AVAILABLE, YOU KNOW, FOR THIS
FIRST REPORT IS NOT TOTALLY
COMPLETE, I'LL SAY IT THAT WAY.
BUT IT DOES PROVIDE AT LEAST A
SMALL SNAPSHOT, YOU KNOW, IN THE
ENROLLMENT BY AGE.
THIS ONE IS FOR -- THIS CHART IS
NIH AS A WHOLE WITHIN WHAT IS
TERMED BROAD AGE GROUPS WHICH
ARE THE RANGES THAT ARE ON THE
RIGHT-HAND SIDE OF THIS.
AND YOU CAN SEE BASED ON NIH AS
A WHOLE, YOU KNOW, CLOSE TO, YOU
KNOW, 60%, YOU KNOW, 58% ARE IN
ADULTS IN THAT 18-64 AGE RANGE,
AND THEN IT'S REALLY KIND OF,
YOU KNOW, SPLIT FAIRLY EVENLY,
YOU KNOW, BETWEEN CHILDREN AND
OLDER ADULTS WHICH ARE 65 YEARS
AND OLDER.
NEXT SLIDE.
HERE'S A PIECHART OF NIMHD IN
THE BROAD CATEGORIES, AND YOU
CAN SEE THAT IT IS
OVERWHELMINGLY, YOU KNOW,
ADULTS, IN THAT 18-64 AGE RANGE.
ABOUT 10%, YOU KNOW, OF CHILDREN
AND MUCH LOWER, YOU KNOW, IN THE
OLDER ADULTS AGE 65 AND OLDER.
AND WHEN YOU THINK ABOUT NIH AS
A WHOLE WHERE YOU HAVE CERTAIN,
YOU KNOW, I.C.s THAT ARE
FAIRLY DEDICATED TO CERTAIN, YOU
KNOW, AGE RANGES ON THAT
CONTINUUM LIKE, YOU KNOW, THE
NATIONAL INSTITUTE ON CHILD
HEALTH AND NATIONAL INSTITUTE ON
AGING, IT'S NOT SURPRISING THAT
WE, YOU KNOW, WOULD -- MIGHT SEE
SOME, YOU KNOW, DIFFERENCES
BETWEEN THE INDIVIDUAL, YOU
KNOW, I.C.s AND WHAT'S REALLY
INCLUDED IN NIH AS A WHOLE.
NEXT SLIDE.
THIS IS JUST A DIFFERENT, YOU
KNOW, REPRESENTATION OF WHAT THE
DISTRIBUTION LOOKS LIKE WITH
NARROW RANGES WITHIN THE, YOU
KNOW, WITHIN THE PARTICULAR AGE
GROUPINGS.
AND YOU CAN SEE, YOU KNOW, NIH
AS A WHOLE A REAL CONCENTRATION,
YOU KNOW, AROUND THAT, YOU KNOW,
26 TO 64, YOU KNOW, AGE RANGE,
OR AGE GROUP, OR INDIVIDUALS
WITHIN THOSE AGE RANGES.
NEXT SLIDE.
AND HERE'S NIMHD.
IT'S A LITTLE DIFFERENT.
THESE ARE ACTUAL NUMBERS,
PREVIOUS ONE WAS PERCENTAGES,
BUT THIS, AGAIN, SHOWS A PATTERN
THAT WAS ON THE PIECHART THAT WE
HAD WHERE ESSENTIALLY THE VAST
MAJORITY OF OUR PROJECTS ARE
REALLY WITHIN, YOU KNOW, THAT
ADULT AGE RANGE, 26- 64.
NEXT SLIDE.
BEFORE I BASICALLY END I JUST
WANT TO, YOU KNOW, MENTION A
COUPLE THINGS THAT I THINK MAY
BE IMPORTANT FOR US TO THINK
ABOUT.
YOU KNOW, GOING FORWARD, BASED
ON THE INFORMATION THAT WAS
PROVIDED, YOU KNOW, THROUGH THE
INCLUSION SYSTEM.
I THINK THAT IT WOULD BE NICE TO
KNOW A LITTLE MORE ABOUT THAT
GROUPING THAT IS UNKNOWN RACE OR
ETHNICITY OR NOT REPORTED.
IT, YOU KNOW, SEEMS TO BE A
SUBSTANTIAL GROUP OF
INDIVIDUALS.
IT WOULD BE NICE TO KNOW A
LITTLE MORE ABOUT THAT GROUP AND
WAYS TO -- OR IF THERE ARE WAYS
TO ACTUALLY BE ABLE TO REDUCE
THAT, YOU KNOW, SO THE STUDIES,
YOU KNOW, HAVE MORE COMPLETE
DATA ON RACE AND ETHNICITY.
INCLUSION IS ALSO BEING
CONNECTED TO THE RCDC, YOU KNOW,
CATEGORIES AT NIH.
I THINK IT WOULD BE IMPORTANT TO
KIND OF ANALYZE THAT, KNOWING
THAT, YOU KNOW, RCDC, YOU KNOW,
HAS ITS BENEFITS BUT ALSO HAS
ITS LIMITATIONS BECAUSE THE
DISEASE CATEGORIES, YOU KNOW,
FROM OUR -- ARE OVERLAPPING FOR
ANY PARTICULAR, YOU KNOW,
PROJECT SO YOU DON'T ALWAYS HAVE
A -- NECESSARILY HAVE A CLEAR
MATCH WITH WHAT THE PROJECT IS
REALLY DOING VERSUS, YOU KNOW,
WHAT IT MAY BE CATEGORIZED BY
THE DIFFERENT, YOU KNOW,
INDIVIDUAL VARIABLES UNDER, YOU
KNOW, RCDC.
YOU CAN PROBABLY, YOU KNOW,
IMAGINE THAT A FAIR, YOU KNOW,
NUMBER OF THESE -- THE
ENROLLMENT NUMBERS WILL END UP
IN RCDC FOR OUR INSTITUTE BEING,
YOU KNOW, TAGGED WITH SOME OF
THE CATEGORIES OF THE TYPE OF
RESEARCH THAT WE DO LIKE SOCIAL
AND BEHAVIORAL STUDIES OR
PREVENTION OR SOCIAL
DETERMINANTS OF DISEASE, HEALTH
SERVICES, BEHAVIORAL RESEARCH SO
IT MIGHT BE SOME INTEREST, IS
THERE ADDITIONAL GRANULARITY WE
CAN DERIVE FROM, YOU KNOW,
LOOKING AT HOW THE ENROLLMENT
NUMBERS DO MATCH WITH THE
DIFFERENT RCDC, YOU KNOW, TERMS.
I THINK ONE OF THE MOST
SIGNIFICANT THINGS THAT WE
REALLY NEED TO FIND A WAY, AND I
SAY WE I MEAN NIH, YOU KNOW, AS
A WHOLE, IS TO -- HOW DO WE
REALLY ANALYZE THE ENROLLMENT
DATA WITH WHAT WAS REALLY
PROPOSED IN THE APPLICATION, YOU
KNOW, BASED ON, YOU KNOW, THE
SCIENTIFIC, YOU KNOW, GOALS OF
THAT PARTICULAR, YOU KNOW,
PROJECT.
CLEARLY THERE'S BEEN MORE
OVERSIGHT AND MONITORING OF
ENROLLMENT AND I.C.s TAKE
STEPS, YOU KNOW, TO CORRECT
PROJECTS THAT ARE LAGGING BEHIND
IN THEIR ENROLLMENT BUT THERE
NEEDS TO BE A BETTER SYSTEMATIC
WAY TO REALLY CONNECT AND TO
ENSURE THAT, YOU KNOW, THE
CATEGORIZATION OR CODING OF THE
SCIENTIFIC PARAMETERS OF
ENROLLMENT BY THE REVIEW GROUP
IS ACTUALLY WHAT WILL EVENTUALLY
BE ATTAINED AT THE END OF THE
PROJECT.
THE LAST THING I'LL SAY IS THAT
IT WILL ALSO BE VERY NICE TO
REALLY LOOK AT COMPLETE DATA ON
THE INCLUSION ACROSS THE
LIFESPAN.
AND ALSO, YOU KNOW, TO LOOK AT
THAT, TO GET A REAL SENSE ABOUT,
YOU KNOW, WHETHER OR NOT, YOU
KNOW, THE NATURE OF THE
DIFFERENT RESEARCH PROJECTS, YOU
KNOW, ARE MAINTAINING THAT REAL
FIDELITY TO THE GOAL OF ASSURING
THAT, YOU KNOW, INDIVIDUALS WITH
ALL -- WITHIN ALL THE AGE
GROUPINGS ALONG THE LIFESPAN,
YOU KNOW, HAVE THE OPPORTUNITY
TO PARTICIPATE IN CLINICAL
RESEARCH AND ACCRUE THE BENEFITS
OF PARTICIPATION IN CLINICAL
BENEFITS UNLESS THERE'S SOME
REAL SCIENTIFIC OR ETHICAL
REASON NOT TO DO THAT.
RIGHT NOW THE DATA WE HAVE FOR
2021 IS INCOMPLETE AND
SUBSEQUENT YEARS MAY BE VERY,
VERY HELPFUL, YOU KNOW, HELPING
US FIND WAYS TO ASSURE THAT
PARTICULAR GOAL IS MET.
SO I WANT TO THANK EVERYONE AND
I'LL STOP THERE.
>> THANK YOU VERY MUCH, NATHAN.
I HAVE TO SAY WE DIDN'T PLAN
ENOUGH TIME FOR THIS
PRESENTATION.
IT'S NOW EVERY THREE YEARS.
THERE'S ALWAYS ISSUES WITH THE
DATA THAT AREN'T NECESSARILY
EASY TO FIX.
IT'S NOT OUR ROLE NECESSARILY.
IT'S OER.
IT'S OFFICE OF EXTRAMURAL
RESEARCH.
BUT IT DOES HIGHLIGHT A NUMBER
OF IMPORTANT POINTS.
I THINK IF ONE LOOKS AT THE
NUMBER OF LATINOS THAT WERE
ACTUALLY ENROLLED IN NIMHD
STUDIES THEY WENT WAY UP.
IF YOU ADD THOSE TO THE OTHER
EVEN TAKING OFF SOME OF THE
PERCENT BECAUSE OF BLACK LATINOS
OR ASIAN LATINOS, NIMHD NUMBERS
ARE CLOSER TO 75% OR SO FROM ONE
OF THESE RACIAL AND ETHNIC
POPULATIONS WE'RE TARGETING.
ANY OTHER WHITES I'M SURE LOWER
SOCIOECONOMIC STATUS WHICH IS
NOT ASKED FOR IN THESE DATA
ALTHOUGH AT LEAST WE HAVE
CONTINUED TO ASK OER TO CONSIDER
FIGURING OUT A WAY TO COLLECT
IT.
I FIND 15% OR WHATEVER IT WAS,
14, ALMOST 15% UNKNOWN ACROSS
NIH, 13% IS REALLY FIRST THE
RESPONSIBILITY OF INVESTIGATORS
TO ASCERTAIN THAT, WHY ISN'T IT
BEING REPORTED?
SECOND, WE AS NIH STAFF TO MAKE
THEM MORE ACCOUNTABLE WHEN THEY
ARE NOT REPORTING IT IS TO GIVE
US AN EXPLANATION.
THE ACCOUNTABILITY TO WHAT
PEOPLE PROPOSE AND WHAT THEY DO
IS ALSO WORTHWHILE REITERATING.
THERE ARE A NUMBER OF COMMENTS
IN THE CHAT.
I THINK WE'VE GOTTEN ABOUT
EASILY 40 MINUTES BEHIND
SCHEDULE.
SO I'M GOING TO ASK THAT YOU --
COUNCIL MEMBERS CLARIFY THEIR
QUESTIONS, MAYBE BRING THEM TO
NATHAN AND MY ATTENTION AND
MONICA AND WE'LL DO OUR BEST TO
RESPOND.
SO WE CAN GO AHEAD AND DO OUR
CONCEPT CLEARANCE.
AND I DON'T KNOW ABOUT THE -- I
DON'T THINK THE SLIDES ARE
AVAILABLE FOR PUBLIC
CONSUMPTION, RIGHT, NATHAN?
I'VE ASKED BEFORE WITH OER, THEY
HAVE SAID NO.
>> OKAY.
>> BUT WE CAN CHECK AGAIN.
APOLOGIZE, BRIAN.
I COULDN'T ANSWER THAT QUESTION.
AMY ASKED A RELEVANT QUESTION,
WHAT IS RIGHT TARGET?
I DON'T THINK THERE'S A SINGLE
ANSWER TO THAT.
IT DEPENDS ON THE CONDITION OR
DISEASE THAT ONE IS STUDYING.
CLEARLY IF YOU HAVE A CLINICAL
TRIAL ON DIABETES, 90% OF
INDIVIDUALS ARE NOT FROM ANY OF
THE RACIAL AND ETHNIC MINORITY
GROUPS, THAT'S NOT THE RIGHT
NUMBER BUT THERE ARE OTHER
CONDITIONS WHERE, YOU KNOW, OR
POPULATIONS PEOPLE HAVE ACCESS
TO.
THERE HAS TO BE AN EFFORT IN ALL
CONTEXT TO RECRUIT A DIVERSE
POPULATION, AND, YOU KNOW, WE
STRUGGLE WITH THAT WITH THE
MODERNA TRIAL, AS YOU KNOW, AND
I THINK WE WERE ABLE TO GET THEM
TO BE AT 37% POPULATIONS FROM
RACIAL AND ETHNIC GROUPS OTHER
THAN WHITE AMERICANS.
AND WE THOUGHT THAT WAS A
RELATIVE SUCCESS.
YOU KNOW, I WOULDN'T CALL IT
OUTSTANDING SUCCESS BUT IT WAS A
LOT BETTER WHERE WE STARTED.
THERE IS NO STRUCTURE FOR
ACCOUNTABILITY AND THAT'S I
THINK PART OF THE PROBLEM IN ANY
DIRECTION.
SO THERE'S NO LEVER THAT WE AS
NIH STAFF CAN SAY, WELL, YOU'RE
NOT DOING WHAT YOU SAID YOU WERE
GOING TO DO BECAUSE A LOT OF
TIMES FUNDING'S OVER, THEY ARE
STILL WORKING ON THEIR ANALYSIS.
SO THIS IS NOT A -- WE'VE MADE
PROGRESS.
IF YOU LOOK AT THE NUMBERS OF
NIH-SUPPORTED STUDIES THEY ARE
CERTAINLY OVERALL -- I THINK I
ADDED UP 32% PLUS THE HISPANIC
GROUP PUSHING IT UP CLOSE TO 40.
THAT'S NOT BAD.
THAT'S CLOSE TO POPULATION
REPRESENTATION.
SO I DON'T THINK THAT THE
DIMENSION OF THIS PROBLEM IS AS
CLOSE TO WHAT WE FACE WITH THE
SCIENTIFIC WORKFORCE.
LET ME TURN IT BACK TO DENICE TO
GUIDE US THROUGH CONCEPT
CLEARANCE.
THANK YOU VERY MUCH, NATE.
>> WE'LL NOW MOVE TO THE
CONCEPTS.
THERE IS ONE CONCEPT TO BE
PRESENTED FOR APPROVAL.
I'LL GIVE A LITTLE BIT OF
BACKGROUND.
TWO COUNCIL REVIEWERS ARE
ASSIGNED TO THIS CONCEPT.
DR. KIMBERLY JOHNSON AND BRIAN
WOSTANSKI, TO MAKE BEST USE OF
TIME OTHER MEMBERS WERE ASKED TO
SHARE COMMENTS WITH ASSIGNED
REVIEWERS, ASKED TO INCLUDE
THESE THOUGHTS WITH THEIR OWN
COMMENTS.
THERE WILL BE AN OPEN
DISCUSSION PERIOD AND MOTION TO
APPROVE OR DISAPPROVE.
NANCY JONES WILL PRESENT THE
CONCEPT.
NANCY?
>> GOOD AFTERNOON.
AGAIN, ON BEHALF OF THESE
PEOPLE WE'RE PRESENTING THE
CONCEPT UNDERSTANDING AND
ADDRESSING MISINFORMATION AMONG
POPULATIONS THAT EXPERIENCE
HEALTH DISPARITIES.
NEXT SLIDE.
THE OBJECTIVE FOR THIS
INITIATIVE IS TWO-FOLD.
FIRST, TO UNDERSTAND UNDERLYING
MECHANISMS AND THEN TO TEST
INTERVENTIONS TO ADDRESS AND
MITIGATE THE IMPACT OF
HEALTH-RELATED INFORMATION AND
DISINFORMATION ON HEALTH
DISPARITIES AND POPULATIONS THAT
EXPERIENCE HEALTH DISPARITIES.
NEXT SLIDE PLEASE.
THE SPREAD OF HEALTH
MISINFORMATION AND
DISINFORMATION HAMPERS PUBLIC
HEALTH EFFORTS.
IT WAS SEEN WITH COVID-19 BUT
EXISTS FOR OTHER HEALTH
CONDITIONS.
WE PROPOSE IT NEEDS TO BE
ADDRESSED AS A THREAT TO PUBLIC
HEALTH AND HEALTH EQUITY.
MISINFORMATION IS INFORMATION
THAT IS INACCURATE, FALSE OR
MISLEADING BASED ON CURRENT
SCIENTIFIC CONSENSUS.
DISINFORMATION REFERS TO
DELIBERATE PRODUCTION AND OR
DISSEMINATION OF MISINFORMATION
TO INFLUENCE PUBLIC OPINION AN
BEHAVIOR IN DECEPTIVE WAY.
GROWING RELIANCE ON SOCIAL MEDIA
COUPLED WITH EROSION OF TRUST IN
TRADITIONAL INSTITUTIONS SUCH AS
SCIENTISTS, GOVERNMENT AND
PUBLIC HEALTH, AND HEALTH CARE
ORGANIZATION HAS GIVEN RISE TO
INCREASED EXPOSURE.
THE PANDEMIC HIGHLIGHTS THE
PROBLEM OF MISINFORMATION AND
DISINFORMATION FOR PUBLIC HEALTH
AND HOW IT OPERATED AS A THREAT.
THE SPREAD OF MISINFORMATION WAS
SEEN CONCERNING NEARLY EVERY
ASPECT OF THE PANDEMIC FROM
VIRUS ORIGINS, UNDERLYING
BIOLOGY, TESTING THE VACCINATION
DEVELOPMENT, ABILITY TO PROTECT,
TO POLICY RESPONSES AND
CONTINUES TO HINDER THE PUBLIC
HEALTH PREVENTION EFFORTS TO
CONTROL THE PANDEMIC.
THINGS LIKE LOWER EDUCATIONAL
ATTAINMENT, LOWER HEALTH
LITERACY, AND HISTORIC AND
CURRENT DISTRUST MAY MAKE
CERTAIN INDIVIDUALS AND
COMMUNITIES MORE SUSCEPTIBLE
OR IMPACTED.
THIS NEEDS TO BE TAKEN WITHIN
CONTEXT THAT PEOPLE ARE EXPOSED
TO MISINFORMATION IN THE CONTEXT
OF INFORMATION ENVIRONMENT WHERE
MEDICAL AND PUBLIC HEALTH
GUIDANCE IS OFTEN COMPLEX,
CHANGING, AND SURROUNDED BY
UNCERTAINTY.
NEXT SLIDE PLEASE.
TWO TYPES OF SCIENCES NEED TO BE
PROPOSED OR CONSIDERED WHEN
EXAMINING THE EFFECTS OF
MISINFORMATION AND
DISINFORMATION.
FIRST, PSYCHOLOGY AND BEHAVIORAL
SCIENCES PROPOSE COGNITIVE
EFFECTIVE AND SOCIAL PROCESSES
THAT UNDERLIE BELIEFS,
ATTITUDES, PERCEPTION RELEVANT
TO MISINFORMATION.
REALLY HOW MISINFORMATION IS
PROCESSED AS WELL AS STRATEGIES
TO COUNTER THE MISINFORMATION.
A COMMON MISCONCEPTION IS
INDIVIDUALS BELIEVE AND SHARE
MISINFORMATION SIMPLY BECAUSE
THEY MISUNDERSTAND OR HAVE LACK
OF ACCESS TO FACTUAL KNOWLEDGE.
BUT COGNITIVE EFFECTIVE AND
SOCIAL PROCESS UNDERLIE, FOR
EXAMPLE INDIVIDUALS MAY LEAVE OR
SHARE MISINFORMATION BECAUSE
THEY SHALL ENGAGING IN INTUITIVE
RATHER THAN DELIBERATE
INFORMATION, THE SOURCE IS
FAMILIAR OR A TRUSTED AUTHORITY
FIGURE, OR BECAUSE THEY ARE
AFFECTED BY EMOTIONS SUCH AS
FEAR OR ANGER.
ON ARE BECAUSE MISINFORMATION
CONFIRMS THEIR WORLD VIEW.
HEALTH COMMUNICATION SCIENCES
INCLUDING HEALTH LITERACY AT THE
INDIVIDUAL ORGANIZATIONAL AND
COMMUNITY LEVEL IS THEORY-DRIVEN
APPROACH TO ADDRESS
MISINFORMATION AND DISTRUST AND
MOTIVATE BEHAVIOR CHANGE.
FOR POPULATIONS THAT EXPERIENCE
HEALTH DISPARITIES, IT'S
IMPORTANT TO ADDRESS HEALTH
LITERACY BEYOND THE INDIVIDUAL
LEVEL.
BECAUSE ORGANIZATIONS AND
COMMUNITIES -- ORGANIZATIONS
NEED TO RECOGNIZE THAT THERE CAN
BE BARRIERS AS WELL AS
TRUSTWORTHINESS OF THESE
ORGANIZATIONS CAN CONTRIBUTE TO
BE ABLE TO ACT ON HEALTH
INFORMATION.
AND THE ROLE OF THE COMMUNITY
AND CULTURAL CONTEXT NEEDS TO BE
TAKEN INTO ACCOUNT BECAUSE IT
HELPS SHAPE HOW TO FIND,
UNDERSTAND, ACCESS, USE HEALTH
INFORMATION AND HEALTH
INFORMATION SERVICES.
AS WE SAW IN THE PANDEMIC, BUT
IS TRUE OF ALL HEALTH
INFORMATION, THERE'S A RANGE OF
ORGANIZATION AND COMMUNITIES
THAT NEED TO BE CONSIDERED,
THINGS LIKE GOVERNMENT AGENCIES,
HEALTH CARE ORGANIZATIONS,
SOCIAL SERVICES PROGRAMS,
PHARMACEUTICAL COMPANIES,
EDUCATIONAL SYSTEMS, PUBLIC
LIBRARIES, COMMUNITY-BASED
ORGANIZATIONS, FAITH BASED
GROUPS, NEWS OUTLETS, SOCIAL
MEDIA AND BUSINESSES.
TWO AREAS NEED TO BE FURTHER
EXPLORED.
FIRST, MECHANISMS, PATHWAYS,
PROCESSES BY WHICH
MISINFORMATION AND
DISINFORMATION IMPACT THINGS
LIKE DECISION MAKING, HEALTH
SEEKING, MEDICAL CARE FOR
POPULATIONS THAT THAT EXPERIENCE
HEALTH DISPARITIES.
AND STUDIES ARE NEEDED TO
UNDERSTAND HOW INDIVIDUALS,
FAMILIES, SOCIAL NETWORKS,
ORGANIZATIONS, AND COMMUNITIES
AS WELL AS SOCIAL AND CULTURAL
CONTEXTS SHAPE THE UNDERSTANDING
AND USE OF HEALTH INFORMATION.
NEXT SLIDE PLEASE.
WHAT WE'RE PROPOSING IS RESEARCH
TO BOTH UNDERSTAND, ADDRESS,
MITIGATE THE HARMFUL IMPACTS OF
MISINFORMATION AND
DISINFORMATION AMONG POPULATIONS
THAT EXPERIENCE HEALTH
DISPARITIES.
WE BELIEVE THIS NEEDS TO BE
MULTI-LEVEL, MULTI-DISCIPLINARY,
COMMUNITY ENGAGED APPROACHES
THAT RECOGNIZE PSYCHOSOCIAL
FACTORS, STRUCTURAL RACISM,
MISTRUST, AND MARGINALIZATION OF
COMMUNITIES.
IN PARTICULAR WE'RE INTERESTED
IN ADDRESSING PARTICULAR
POPULATIONS, THOSE WITH LIMITED
HEALTH IN SCIENCE LITERACY,
RURAL POPULATIONS, IMMIGRANT
COMMUNITIES, RACIAL AND ETHNIC
MINORITY GROUPS, AND THOSE WITH
DEEP DISTRUST IN SCIENCE, EXPERT
AND GOVERNMENT INSTITUTIONS.
EXAMPLES OF HEALTH TOPICS
INCLUDE COVID-19, HIV/AIDS,
SEXUALLY TRANSMITTED INFECTIONS,
VACCINES, GENETIC TESTING,
CANCER, AND TOBACCO USE AND
CESSATION, AMONG OTHERS.
OUTCOMES OF INTEREST WOULD
INCLUDE ACCESS MORBIDITY AND
MORTALITY, PHYSICAL AND MENTAL
HEALTH, BEHAVIORAL CHANGES,
ADHERENCE TO EVIDENCE-BASED
PREVENTION AND TREATMENT
GUIDELINES AND RECOMMENDATIONS.
AND, AGAIN, COMMUNITY ENGAGED
APPROACHES THAT INVOLVE TRUSTED
COMMUNITY SOURCES ARE IMPORTANT
TO ADDRESS THE ORGANIZATIONAL
AND COMMUNITY HEALTH LITERACY
AND STRUCTURAL RACISM.
THE NEXT SLIDE PLEASE.
WE BELIEVE THAT THE RESEARCH
PRIORITIES SHOULD INVOLVE BOTH
PRIORITIES TO UNDERSTAND
UNDERLYING MECHANISMS AS WELL AS
TO PROMOTE TESTING INTERVENTIONS
TO ADDRESS AND MITIGATE
MISINFORMATION.
SOME EXAMPLES INCLUDE EXAMINING
THE PATHWAYS AND MECHANISMS BY
WHICH MISINFORMATION AND
DISINFORMATION DIFFERENTIALLY
IMPACT POPULATIONS THAT
EXPERIENCE HEALTH DISPARITIES
INCLUDING ROLE OF STRUCTURAL
RACISM, AND MISTRUST IN SCIENCE
AND MEDICINE.
UNDERSTANDING HOW EFFECTIVE
SOCIAL AND COGNITIVE FACTORS,
DECISION MAKING BIASES, AND
MALADAPTIVE AND ADAPTIVE
RESPONSES INFLUENCE THE
PROCESSING AND SHARING OF
MISINFORMATION AND
DISINFORMATION.
EXAMINING THE ROLE OF SOCIAL
NETWORKS IN INDIVIDUALS AND
FAMILIES WITHIN SOCIAL NETWORKS,
COMMUNITIES, ORGANIZATIONS, THE
SPREAD AND CONTAINMENT OF
MISINFORMATION AND
DISINFORMATION.
EXAMINING THE ROLE OF
ORGANIZATIONAL AND COMMUNITY
HEALTH LITERACY TO MAKE HEALTH
INFORMATION AND SERVICES
EQUITABLE, UNDERSTANDABLE,
USEFUL, DEVELOPING AND
EVALUATING INTERVENTIONS THAT
ADDRESS HEALTH AND HEALTH
LITERACY AT THE INDIVIDUAL
ORGANIZATIONAL AND COMMUNITY
LEVEL.
AND FINALLY PARTNERING WITH
COMMUNITIES TO DEVELOP AND
EVALUATE INTERVENTIONS DESIGNED
TO ENGENDER TRUST IN SCIENCE AND
EVIDENCE-BASED DECISION MAKING
AND ADDRESSING MISINFORMATION ON
MEDICAL MISTRUST RELATED TO
COVID-19 BUT ALSO TO ALL OF THE
HEALTH OUTCOMES THAT WE'VE
IDENTIFIED AS PRIORITIES.
WITH THAT, I WELCOME HEARING
FROM OUR COUNCIL MEMBERS, THEIR
INPUT ON THIS CONCEPT.
THANK YOU.
>> THANK YOU, NANCY.
WE'LL HEAR FROM DR. JOHNSON
FIRST.
DO YOU HAVE COMMENTS, KIMBERLY?
>> YES.
THANK YOU SO MUCH FOR THE
OPPORTUNITY TO REVIEW THIS
CONCEPT.
I WAS REALLY EXCITED ABOUT IT.
CERTAINLY IN OUR HEALTH
DISPARITIES RESEARCH CENTER, THE
SETTING OF COVID WE HEARD A LOT
FROM COMMUNITY AND PATIENT STAKE
HOLDERS ABOUT THEIR INTEREST AND
EFFORTS TO COMBAT MISINFORMATION
AND DISINFORMATION AROUND COVID.
THIS IS A WELL WRITTEN CONCEPT,
WHICH IS ALREADY THOROUGH AND
HAS IMPORTANT RESEARCH
PRIORITIES.
SOME THINGS THAT I REALLY LIKED
AND STOOD OUT REALLY THIS
FRAMING OF MISINFORMATION AND
DISINFORMATION AS A PUBLIC
HEALTH THREAT, THAT'S SOMETHING
I'VE READ ABOUT RECENTLY.
CERTAINLY THE USE OF A HEALTH
DISPARITIES LENS GIVEN AS DR.
JONES TALKED ABOUT,
DISPROPORTIONATELY IMPACT OF
INFORMATION AND DISINFORMATION
ON POPULATIONS THAT ALREADY
EXPERIENCE HEALTH DISPARITIES.
THE FOCUS ON UNDERSTANDING
MECHANISMS AND PATHWAYS, AND
FOCUS ON INTERVENTION, SOMETHING
THAT I THINK WE HAVE NOT ENOUGH
OF IN TERMS OF THINKING ABOUT
WAYS TO MITIGATE AND ADDRESS
HEALTH DISPARITIES.
AND CERTAINLY THIS CONCEPT
INCLUDED A WIDE RANGE OF FACTORS
FOR CONSIDERATION WHICH I REALLY
LIKE THE PSYCHOSOCIAL CULTURAL
STRUCTURAL ISSUES AROUND
STRUCTURAL RACISM AN MISTRUST
AND FINALLY EMPHASIS ON
MULTI-LEVEL STAKEHOLDER
INTERVENTION FROM INDIVIDUALS
AND COMMUNITIES TO GOVERNMENT
AND OTHER INSTITUTIONS.
SOME THINGS TO CONSIDER AS THE
HOPEFULLY CONCEPT MOVES FORWARD
IS THINKING ABOUT A BROADER
GROUP OF OUTCOMES OF INTEREST,
HAVE YOU SOME REALLY GREAT ONES
IN THERE THAT ARE MORE DISTAL,
LIKE MORBIDITY AND MORTALITY,
BUT THINKING ABOUT TRYING TO
UNDERSTAND MECHANISMS OR PATH
WAYS OR WAYS INTERVENTIONS MIGHT
BE HELPFUL, MORE PROXIMAL THINGS
LIKE BELIEFS, ATTITUDES,
PERCEPTIONS, IMPACT ON HEALTH
CARE DECISION MAKING AND HEALTH
BEHAVIORS.
ANOTHER THING I THINK TO ELEVATE
AND YOU MENTIONED THIS IS REALLY
A FOCUS ON STRONG COMMUNITY
ENGAGED RESEARCH METHODS FOR
STUDIES LIKE THIS, PARTICULARLY
GIVEN WHAT WE'VE SEEN ABOUT
MISINFORMATION AND
DISINFORMATION CIRCULATING AND
OPERATING AT THE LEVEL OF
COMMUNITIES.
WE TALK A LOT ABOUT THE NEGATIVE
IMPACT OF MISINFORMATION AND
DISINFORMATION, AND JUST
THINKING ABOUT HOW WE'VE THOUGHT
A LOT ABOUT HEALTH DISPARITIES
MORE RECENTLY, FOCUS ON
RESILIENCE TO MISINFORMATION OR
DISINFORMATION SO WHAT ARE THE
THINGS THAT ALLOW COMMUNITIES TO
DO WELL IN SPITE OF CIRCULATION
MIGHT LEAD TO FAVORABLE UPTAKE
OF FACTUAL INFORMATION.
SOME OTHER THINGS THAT WERE
MENTIONED BY OR SHARED BY OTHER
MEMBERS OF THE ADVISORY PANEL TO
CONSIDER IS CONSIDERATION AROUND
NAMING SOME SPECIFIC GROUPS THAT
ARE IMPACTED BY MISINFORMATION
DURING COVID IN PARTICULAR
WITHIN HEALTH DISPARITY
POPULATIONS LIKE PREGNANT AND
LACTATING WOMEN AND FAMILIES OF
YOUNG CHILDREN.
OTHER FACTORS TO CONSIDER RELATE
TO UPTAKE AND IMPACT OF
MISINFORMATION COULD INCLUDE
FACTORS RELATED TO TRUST AND
TRUSTWORTHINESS WHICH YOU
MENTIONED IN HEALTH CARE
INSTITUTIONS BUT FOCUS NOT ONLY
ON HISTORICAL EXPERIENCES THAT
WE OFTEN TALK ABOUT BUT CURRENT
ISSUES AS WELL RELATED TO ACCESS
TO CARE, QUALITY OF CARE, AND
CERTAINLY POPULATIONS
EXPERIENCED WITH HEALTH CARE.
ANOTHER FACTOR TO CONSIDER,
INDIVIDUAL TRAITS WHICH MAY
INFLUENCE SUSCEPTIBILITY TO
MISINFORMATION AND FINALLY FOCUS
ON COGNITIVE PROCESSES WHICH
INFLUENCE DECISION MAKING.
ONE OTHER THING THINKING ABOUT
BROADER INFLUENCES LIKE
EMPLOYMENT TYPE ON EXPOSURE TO
AND UPTAKE OF INFORMATION
FOCUSING ON THE LABOR MARKET,
SOMETHING NIMHD HAS BEEN
INTERESTED IN IN RECENT FUNDING
OPPORTUNITIES.
THAT'S ALL.
THIS IS EXCELLENT AND LOOK
FORWARD TO IT.
>> THANK YOU VERY MUCH, DR.
JOHNSON.
NOW WE'LL CALL ON DR. NUSTANSKI,
WOULD YOU PLEASE PROVIDE
COMMENTS?
>> YES, THANKS.
I WANT TO BEGIN BY ECHOING DR.
JOHNSON'S COMMENTS, A VERY
IMPORTANT AND TIMELY CONCEPT,
WELL CRAFTED.
YOU KNOW, I THINK THE FACT THIS
IS COMING OUT OF NIMHD MAKES A
LOT OF SENSE, WHILE ALL
POPULATIONS ARE EXPOSED,
SUSCEPTIBILITY TO THE EFFECTS OF
MISINFORMATION AND
DISINFORMATION THERE'S REALLY
THE POTENTIAL FOR ELEVATED HARM
AMONG GROUPS, MINORITY GROUPS,
HEALTH DISPARITY GROUPS, AND WE
SHOULD CONSIDER NOT JUST HOW
THESE GROUPS MAY BE INCREASED --
HAVE INCREASED VULNERABILITY BUT
ALSO SOMETIMES HOW THEY MIGHT
SPECIFICALLY BE THE TARGETS OF
DISINFORMATION CAMPAIGNS RATHER
THAN JUST INCREASED
VULNERABILITY TO EFFECTS, FOR
EXAMPLE, CERTAIN TOBACCO
ADVERTISING, FOR EXAMPLE, A
PARTICULAR MINORITY COMMUNITY,
MAY FOCUS ON -- MAY PROVIDE
EXAMPLES HISTORICALLY HOW
MINORITY COMMUNITIES ACTUALLY
SPECIFICALLY HAVE BEEN TARGETED
WITH THESE KINDS OF CAMPAIGNS.
ANOTHER INTERESTING
CONSIDERATION IS HOW
MISINFORMATION OCCURS IN THE
CONTEXT OF REALLY CHANGING
PUBLIC HEALTH GUIDANCE.
COVID PROVIDES AN EXCELLENT
EXAMPLE.
PARTICULARLY IMPORTANT BECAUSE
THE MESSAGING CHALLENGES ARE
DIFFERENT WHEN YOU'RE TALKING
ABOUT EMERGING PUBLIC HEALTH,
UNDERSTANDING EMERGING
SCIENTIFIC UNDERSTANDING, WHICH
IS DIFFERENT THAN WHERE OUR WELL
KNOWN ASSOCIATIONS BETWEEN RISK
FACTOR AND HEALTH OUTCOME.
FOR EXAMPLE, IN THE EVOLVING
SCIENCE THERE'S AMBIGUOUS
INFORMATION THAT'S COMMON EARLY
IN SCIENTIFIC RESEARCH, NEW
AREAS, CASE OF COVID THERE WAS A
LOT OF DISCUSSION ABOUT SURFACE
TRANSITION, DISPUTES ABOUT
MASKING, AS THE SCIENCE WAS
ACCUMULATING.
AN WE UNDERSTOOD MORE ABOUT HOW
COVID WAS TRANSMITTED AND
PREVENTED, AND SO IN EMERGING
SORT OF PUBLIC HEALTH ISSUES
THAT ISSUE OF HOW TO MESSAGE AS
THE SCIENCE IS ACCUMULATING, HOW
DO WE MESSAGE SCIENTIFIC
UNCERTAINTY IS PARTICULARLY
IMPORTANT.
AND FOR EXAMPLE SOME POPULATIONS
LIKE PREGNANT WOMEN, THIS MAY BE
A PARTICULARLY ACUTE ISSUE
BECAUSE OFTEN SCIENCE OF
UNDERSTANDING HOW ISSUES MAY BE
SPECIFIC TO PEOPLE WHO ARE
PREGNANT OR IN CHILDREN MAY TAKE
LONGER TO ACCUMULATE.
WE ALSO HAVE CHALLENGES OF
COMMUNICATING INFORMATION WHEN
WE HAVE TREATMENTS THAT ARE NOT
A HUNDRED PERCENT EFFECTIVE OR
PREVENTION PROGRAMS NOT A
HUNDRED PERCENT EFFECTIVE.
ALMOST OF COURSE ALMOST NO
TREATMENT IS 100% EFFECTIVE BUT
THAT CREATES OPPORTUNITIES FOR
MISINFORMATION AND
DISINFORMATION AND THE ISSUES
OUTCOMES MAY NOT BE WHAT PEOPLE
THINK, FOR EXAMPLE, PEOPLE MAY
THINK IT'S IMPORTANT VACCINE
PREVENTS INFECTION VERSUS
PREVENTING DEATH OR
HOSPITALIZATION AS OUTCOMES OF
RESEARCH.
HOW DO WE MESSAGE THAT AND
COMMUNICATE THOSE COMPLEX
OUTCOMES IS VERY IMPORTANT.
THE CONCEPT DISCUSSES OUTCOMES
THAT ARE BOTH BEHAVIORAL AND
HEALTH OUTCOMES RATHER THAN JUST
KNOWLEDGE AND ATTITUDES BUT ALSO
THINKING ABOUT HOW KNOWLEDGE AND
ATTITUDES MAY BE MEDIATORS MAKES
A LOT OF SENSE AND WE CAN LEARN
A LOT FROM EVEN INTERVENTION
STUDIES ABOUT MECHANISMS THAT
MIGHT EXPLAIN EFFECT OR LACK OF
EFFECT WITH PARTICULAR
INTERVENTIONS.
FINALLY I WANT TO SUGGEST AS
THIS CONCEPT RECEIVES FURTHER
CONSIDERATION REALLY THINKING
ABOUT HOW HYBRID IMPLEMENTATION
EFFECTIVENESS STUDIES MAY BE
HELPFUL AS FOLKS ARE TESTING
INTERVENTIONS SO THAT WE CAN
BEGIN TO UNDERSTAND HOW
SUCCESSFUL COMMUNICATION
STRATEGIES MIGHT BE IMPLEMENTED.
THERE'S SOME REAL CHALLENGES IN
IMPLEMENTING EVEN SUCCESSFUL
INTERVENTIONS AND GIVEN THE
URGENCY OF US IMPLEMENTING
FINDINGS ABOUT HOW TO COMBAT
MISINFORMATION AND
DISINFORMATION COLLECTING
IMPLEMENTATION INFORMATION EVEN
IN THE CONTEXT OF A CLINICAL
TRIAL COULD BE VERY USEFUL FOR
ACCELERATING THE IMPACT OF THIS
WORK.
SO THANK YOU FOR THE OPPORTUNITY
TO COMMENT ON THIS VERY WELL
THOUGHT THROUGH CONCEPT.
>> THANK YOU, BRIAN.
ARE THERE COMMENTS OR QUESTIONS
FROM OUR COUNCIL MEMBERS ON THIS
CONCEPT?
ALL RIGHT.
SEEING NONE, MAY I HAVE A MOTION
TO MOVE THE CONCEPT FORWARD FOR
FUNDING OPPORTUNITY ANNOUNCEMENT
DEVELOPMENT?
>> MOTION TO MOVE FORWARD WITH
THIS CONCEPT.
>> SECOND.
>> I SECOND.
>> ALL IN FAVOR, SUBMIT Y OR YES
IN THE CHAT BOX.
ANY OPPOSED SUBMIT N OR NO IN
THE CHAT BOX.
AND WE'LL HAVE THE COUNT IN A
MOMENT.
AFTER HAVING BEEN MOVED AND
PROPERLY SECONDED THE CONCEPT
WILL MOVE FORWARD TO FUNDING
OPPORTUNITY ANNOUNCEMENT FOA
DEVELOPMENT.
THANK YOU VERY MUCH.
NOW WE WILL TURN THE MEETING
OVER TO DR. PEREZ-STABLE FOR
CLOSING REMARKS AND
ADJOURNINGMENT.
>> THANK YOU TO DENICE AND
COUNCIL MEMBERS FOR THEIR WORK
IF CONTRIBUTING TO THIS,
ESPECIALLY STEPH. -- STAFF.
THIS CAME IN NOT AT THE LAST
MINUTE BUT NOT WITH ADVANCE
PLANNING WE SET UP CONCEPTS,
VERY WELL DEVELOPED AND VERY
EFFECTIVE AND I THINK IMPORTANT
TO ADDRESS.
IT HAS BEEN PERVASIVE, THE
MISINFORMATION FOR DECADES, AND
I THINK COVID AGAIN HAS UNVEILED
HOW MUCH DAMAGE IT CAN DO.
BUT I SUSPECT THAT SOME OF YOU
ARE OLD ENOUGH TO REMEMBER SOME
OF THE MISINFORMATION THAT WAS
RAMPANT IN THE 1980s ABOUT
HIV/AIDS, THAT FOR THE MOST PART
WAS, YOU KNOW, SCIENTIFICALLY WE
COULD DISMISS AS NOT MAINSTREAM
AND BECAUSE THE DISEASE WAS NOT
TRANSMITTED IN THE WAY THAT
COVID IS, BY RESPIRATORY CASUAL
CONTACT, AND IT BECAME EASY
ISSUE -- EASIER FOR PEOPLE NOT
TO THINK ABOUT IT THERE WERE
QUITE A FEW CONSPIRACY THEORIES
AND OTHER FACTORS THAT PLAYED UP
IN THOSE DAYS AS WELL.
I ALSO APPRECIATE ALL THE
PRESENTATIONS AND DISCUSSIONS.
I THINK WE LEARNED A LOT ABOUT
OPPORTUNITIES ACROSS NIH AS WELL
AS ABOUT THE NATIVE HAWAIIAN
WORK AND WORK IN THE ARKANSAS
DELTA.
YOU HEARD ABOUT THE INCLUSION
REPORT.
I THINK THERE'S WORK TO BE DONE
THERE.
AND CERTAINLY WELCOME THAT YOU
TRANSMIT YOUR THOUGHTS TO US.
IT HAS BEEN A LONG DAY, BUT A
VERY PRODUCTIVE AND GOOD DAY.
I AM DELIGHTED TO HAVE WELCOMED
NEW MEMBER OF THE COUNCIL FULLY
VETTED AND WILL HOPEFULLY HAVE
FULLY VETTED MEMBERS FOR THE MAY
COUNCIL.
UNTIL THEN, HOPEFULLY YOU'LL
STAY SAFE AND PERHAPS IN MAY
WE'LL BE SEEING CASE RATES GO
WAY DOWN AND WE'LL BE TALKING
AGAIN ABOUT IN-PERSON MEETING IN
SEPTEMBER.
LET'S BE OPTIMISTIC.
ALL RIGHT.
THANK YOU VERY MUCH.
HAVE A GREAT WEEKEND.