GOOD MORNING, EVERYONE.
IT'S GREAT TO SEE EVERYBODY IN
THE ROOM, MANY ARE JOINING
REMOTELY.
I'LL CALL THE 115th MEETING OF
THE NATIONAL ARTHRITIS AND
MUSCULOSKELETAL AND SKIN
DISEASES ADVISORY COUNCIL TO
ORDER.
VERY OFFICIAL NOW.
SO AS YOU PROBABLY KNOW, ALL
COUNCIL MEETINGS ARE OPEN TO THE
PUBLIC, AS REQUIRED BY LAW,
EXCEPT FOR THE REVIEW,
DISCUSSION, EVALUATION OF GRANT
APPLICATIONS AND RELATED
INFORMATION WHICH WILL BE
ADDRESSED IN CLOSED SESSION THIS
AFTERNOON.
BEFORE WE PROCEED I'D LIKE TO GO
AROUND THE TABLE SO COUNCIL
MEMBERS AND STAFF WITH US HERE
TODAY CAN QUICKLY INTRODUCE
THEMSELVES.
WHY DON'T WE START OVER HERE, ON
MY RIGHT, WITH BECKY AND WE'LL
GO AROUND THE ROOM.
>> BECKY MANILO, WITH THE
SOCIETY FOR INVESTIGATIVE
DERMATOLOGY, DELIGHTED TO BE
HERE.
>> SHARON, WITH THE ORTHOPEDIC
RESEARCH SOCIETY.
THIS IS MY FIRST COUNCIL
MEETING, HAPPY TO BE HERE.
>> AIMEE PAYNE, COLUMBIA
UNIVERSITY, THANK YOU SO MUCH.
>> FROM CLEVELAND CLINIC,
BIOMEDICAL ENGINEERING FOCUSING
ON IMAGING.
HAPPY TO BE HERE.
THANK YOU.
>> ELIZABETH McNALLY,
NORTHWESTERN UNIVERSITY, LEAD
THE CENTER FOR GENETIC MEDICINE,
CARDIOLOGIST BY TRAINING,
WORKING WITH PATIENTS WITH
MUSCULAR DYSTROPHY AND ON BOARD
OF DIRECTORS.
>> ROBERT WALKER, CHIEF
DIVERSITY OFFICER FOR NIAMS.
>> GOOD MORNING, BOB CARTER,
DEPUTY DIRECTOR NIAMS.
>> GOOD MORNING, DARREN
SLEDJESKI, DIRECTOR OF DIVISION
OF EXTRAMURAL ACTIVITY AT NIAMS,
EXECUTIVE SECRETARY OF COUNCIL.
>> GOOD MORNING, GAYLE LESTER,
DIRECTOR OF EXTRAMURAL RESEARCH
AT NIAMS, PLEASED TO BE HERE.
>> I'M A RHEUMATOLOGIST FROM
UCSF.
>> GOOD MORNING, STEVE TAYLOR.
AND CEO OF ARTHRITIS FOUNDATION,
HONORED TO BE ON THE COUNCIL.
>> GOOD MORNING, CARL JUSTIN,
UNIVERSITY OF MICHIGAN MEDICAL
SCHOOL, PROFESSOR OF ORTHOPEDIC
SURGERY.
>> GOOD MORNING, LOUISE TOMA,
UNC AT CHAPEL HILL.
>> DOUGLAS KEHL, PROFESSOR OF
MEDICINE, HARVARD MEDICAL
SCHOOL, GENETIC EPIDEMIOLOGY AND
GENERAL EPIDEMIOLOGY AT HEBREW
SENIOR LIFE IN BOSTON.
>> THANK YOU SO MUCH.
I'D LIKE TO ACKNOWLEDGE THE MANY
NIAMS STAFF MEMBERS WHO ARE HERE
IN THE ROOM BEHIND ME AND AROUND
ME.
SO THANK YOU ALL FOR BEING HERE.
I'LL NOW CALL ON THE COUNCIL
MEMBERS JOINING VIRTUALLY TO
INTRODUCE THEMSELVES.
>> DR. GOODMAN FIRST.
>> HELLO, STUART GOODMAN,
PROFESSOR OF ORTHOPEDIC SURGERY,
BIOENGINEERING, STANFORD
UNIVERSITY.
THANK YOU.
>> GOOD MORNING, I'M THE FORMER
EXECUTIVE DIRECTOR OF THE
AMERICAN SOCIETY
[AUDIO DISTORTION]
>> THANK DR. GRECO?
>> GOOD MORNING, VALENTINA
GRECO, PROFESSOR OF GENETICS.
>> DR. BOTCHWEY.
>> GOOD MORNING, ED BOTCHWEY,
PROFESSOR OF BIOMEDICAL
ENGINEERING, GEORGIA TECH
DEPARTMENT OF BME AND EMORY.
>> DR. WAKEFIELD.
>> EMILY WAKEFIELD, U-CONN
SCHOOL OF MEDICINE, AND
CONNECTICUT CHILDREN'S, AD HOC
EARLY CAREER MEMBER.
THANKS FOR THE INVITE.
>> GREAT TO HAVE YOU.
DR. STEBA?
GOOD MORNING, VICE PRESIDENT AND
CHIEF SCIENTIFIC OFFICER,
RESEARCH ALLIANCE.
>> THANK YOU.
I THINK WE'VE GOT EVERYBODY.
DID I MISS ANY OTHER COUNCILORS,
VIRTUALLY?
NO.
>> THANK YOU.
IT'S WONDERFUL TO HAVE YOU HERE.
NOW DR. DARREN SLEDJESKI WILL GO
OVER LOGISTICS FOR OUR MEETING.
>> THANK YOU VERY MUCH.
AGAIN, GOOD MORNING.
WELCOME, EVERYONE.
AS YOU PROBABLY GUESSED, COUNCIL
IS A HYBRID MEETING, SOME STAFF
IN THE ROOM, SOME JOINING
REMOTELY.
OTHER STAFF AS WELL AS THE
PUBLIC ARE WATCHING US VIA A
LIVE VIDEOCAST STREAM.
IF ANY STAFF MEMBERS WATCHING ON
THE VIDEOCAST HAS AN URGENT
COMMENT OR QUESTION PLEASE
E-MAIL SHALANDA WELLINGTON, AND
SHE WILL HELP GET AN ANSWER TO
THAT QUESTION.
WE ENCOURAGE VIEWERS TO SUBMIT
COMMENTS IN WRITING UP TO 15
DAYS FOLLOWING THIS MEETING.
WE HAVE A SPECIAL E-MAIL BOX TO
RECEIVE YOUR COMMENTS, THEY CAN
BE SEND TO
NIAMSCOUNCILMAIL@NIAMS.NIH.GOV.
AND WE WILL READ YOUR COMMENTS
AND ACT ON THEM APPROPRIATELY.
NOW, ANYONE ON THE ZOOM CALL MAY
SPEAK BUT PLEASE MAKE SURE TO
MUTE THE LINE WHEN NOT SPEAKING.
YOU CAN ALSO RAISE YOUR HAND
OBVIOUSLY AND WE'LL CALL ON YOU
SHAHLANDRA WILL HELP WITH VOTES.
WHEN WE HAVE A PRESENTATION TURN
YOUR VIDEO OFF SO WE SEE JUST
THE PRESENTER VIEW OF .
IF YOU NEED HELP, CONTACT
SHALANDA.
COUNCIL MEMBERS ARE REQUIRED TO
ABSENT THEMSELVES DURING REVIEW
OF APPLICATION IF THEIR PRESENCE
WOULD CONSTITUTE OR APPEAR TO
CONSTITUTES A CONFLICT OF
INTEREST.
I WOULD LIKE TO REMIND YOU ALL
ABOUT UPCOMING CONFLICT OF
INTEREST REPORTING DATES.
UPDATES ARE REQUESTED IN
OCTOBER, FEBRUARY, JUNE, AND
ESPECIALLY FOR OUR NEW
COUNCILORS YOU'LL GET E-MAIL,
TRY TO SEND YOUR UPDATES AS SOON
AS POSSIBLE.
RESPOND WITHIN 30 DAYS IN ORDER
TO PARTICIPATE IN
COUNCIL-RELATED ACTIVITY.
AND THERE'S FURTHER INFORMATION
REGARDING CONFLICT OF INTEREST
REGULATION INCLUDED IN THE
ELECTRONIC COUNCIL BOOK.
I'M GOING TO TURN TO THE
CONSIDERATION OF MINUTES FROM
OUR LAST COUNCIL.
WE'RE GOING TO TAKE A VOTE.
COUNCIL MEMBERS ON ZOOM, PLEASE
MAKE SURE YOU'RE UNMUTED.
THE COUNCIL MINUTES WERE MADE
AVAILABLE FOR MAY 29 COUNCIL ON
THE ELECTRONIC COUNCIL BOOK.
DOES ANYONE HAVE COMMENTS OR
CORRECTIONS TO THOSE MINUTES?
I'M HEARING NONE.
SEEING NONE.
MAY I HAVE A MOTION TO APPROVE
THE MAY 29 COUNCIL MINUTES?
>> SO MOVED.
>> AND A SECOND?
>> SECOND.
>> THANK YOU.
ANYBODY OPPOSED TO THAT MOTION
PLEASE SAY SO NOW.
HEARING NONE, THE MOTION PASSES
UNANIMOUSLY.
THANK YOU VERY MUCH.
I WOULD ALSO LIKE TO REMIND YOU
THE DATES OF FUTURE COUNCIL
MEETINGS IN THE ELECTRONIC
COUNCIL BOOK AND POSTED ON OUR
WEBSITE.
NEXT MEETING WILL BE IN JANUARY
28, THIS WILL BE A TOTALLY
VIRTUAL MEETING BECAUSE WE KNOW
HOW DIFFICULT IT CAN BE TO
TRAVEL IN THE WINTER ESPECIALLY.
THE SPRING AND FALL MEETINGS
WILL BE HYBRID, WINTER MEETING
VIRTUAL.
WE APPRECIATE YOUR
PARTICIPATION, SO MAKE SURE OF
THE DATES ON YOUR CALENDAR.
JANUARY 28, AND JUNE 3, WE'RE
HAVING TO MOVE THE DATE OF THE
SEPTEMBER MEETING BECAUSE IT HAS
OVERLAP WITH A NATIONAL MEETING,
I CAN'T REMEMBER WHAT NATIONAL
MEETING IT IS THAT OVERLAPS.
WE'LL LET YOU KNOW ABOUT THE
FALL MEETING.
>> THANK YOU, DARREN.
THIS IS THE LAST COUNCIL MEETING
FOR DR. STUART GOODMAN,
VALENTINA GRECO, AND DR. STAEVA.
THANKS FOR YOUR FOUR YEARS OF AS
MUCH AS WHILE THE INSTITUTE HAS
UNDERGONE A MAJOR CHANGE, WE'VE
LAUNCHED TRANS-NIH PROGRAMS, AND
WE'VE DEVELOPED NEW STRATEGIC
PLAN TO GUIDE US THROUGH THE END
OF THE DECADE.
WE HOPE YOU FOUND YOUR TIME ON
COUNCIL AS REWARDING AS YOUR
CONTRIBUTIONS HAVE BEEN TO US.
I'M GRATEFUL FOR YOUR GUIDANCE
AND CONSIDERABLE TIME YOU'VE
INVESTED WHILE PARTICIPATING AND
WE HAVE CERTIFICATES OF
APPRECIATION THAT WILL BE MAILED
TO.
THANK YOU SO MUCH.
SO, JUST MINUTES AGO WE HEARD
AND SAW NEW NAMES AND FACE, I'M
FORMALLY WELCOME FIVE NEW
COUNCIL MEMBERS.
DR. DOUGLAS KIEL, PROFESSOR OF
MEDICINE, AFFILIATED WITH
HARVARD MEDICINE.
RESEARCH ON THE EPIDEMIOLOGY OF
OSTEOPOROSIS AND RELATED
FRACTURES INCLUDING LIFESTYLE
FACTORS, BIOMARKERS, GENETIC
FACTORS THAT CONTRIBUTE TO AND
PROTECT AGAINST THE DISEASE.
DR. LI IS DIRECTOR OF THE
PROGRAM FOR ADVANCED
MUSCULOSKELETAL IMAGING AT THE
CLEVELAND CLINIC.
HER LABORATORY FOCUSES ON
EXPLORING AND DEVELOPING
ADVANCED MUSCULOSKELETAL IMAGING
TECHNIQUES FOR A RANGE OF
DISORDERS.
DR. BECKY MINNILLO WORKED FOR
THE SOCIETY FOR INVESTIGATIVE
DERMATOLOGY FOR 21 YEARS, CHIEF
PROGRAM AND DEVELOPMENT OFFICER.
DR. AIMEE PAYNE WAS AT THE LAST
MEETING, SHE'S NOW CHAIR OF THE
DEPARTMENT OF DERMATOLOGY
COLUMBIA UNIVERSITY MANAGING A
RESEARCH GROUP ON MECHANISMS AND
TREATMENT OF AUTOIMMUNITY.
SHE HAS CONSIDERABLE EXPERIENCE
WITH THE NIAMS INTRAMURAL
RESEARCH PROGRAM, HAVING
RECENTLY CHAIRED THE NIAMS BOARD
OF SCIENTIFIC COUNSELORS.
THANK YOU FOR YOUR SERVICE ON
THAT FRONT.
STEPHEN TAYLOR IS PRESIDENT OF
THE ARTHRITIS FOUNDATION,
PREVIOUSLY EXECUTIVE VICE
PRESIDENT OF MISSION AND
STRATEGIC INITIATIVES.
STEVE HAS EXPERIENCE WITH
SJOGREN'S FOUNDATION, AMERICAN
HEART ASSOCIATION, AND AMERICAN
CANCER SOCIETY.
SO, MANY THANKS TO ALL OF YOU
FOR AGREEING TO SERVE ON THE
COUNCIL AND I LOOK FORWARD TO
YOUR THOUGHTS AND SUGGESTIONS.
AS WE'VE DONE FOR PREVIOUS
MEETINGS WE'VE INVITED
OUTSTANDING INVESTIGATORS FROM
OUR NIAMS POOL OF MENTORED
RECIPIENTS TO PARTICIPATE AS AD
AD
HOC MEMBERS.
TODAY WE'RE JOINED BY ALREADY
LOUISE THOMA, UNIVERSITY OF
NORTH CAROLINA AT CHAPEL HILL,
AND DR. EMILY WAKEFIELD,
CONNECTICUT CHILDREN'S MEDICAL
CENTER.
LOUISE IS ASSISTANT PROFESSOR IN
THE UNC-CHAPEL HILL DIVISION OF
PHYSICAL THERAPY, HER K23 GRANT
IS STUDY DISABILITY SCREENING
TOOL INTEGRATED INTO ROUTINE
CARE FOR ARTHRITIS PATIENTS AND
REFERS TO TAILORED PHYSICAL
THERAPY PROTOCOLS.
EMILY IS A PEDIATRIC
PSYCHOLOGIST IN DIVISION OF PAIN
AND PALLIATIVE MEDICINE, HAS A
K23 AWARD TO STUDY STIGMA WITH
MUSCULOSKELETAL PAIN.
FEEL FREE TO PARTICIPATE IN THE
DISCUSSIONS TODAY AND PROVIDE
YOUR PERSPECTIVE.
MY REPORT TODAY WILL FOCUS ON
THREE TOPICS, I'LL REVIEW NIH
AND NIAMS BUDGET, I'LL MENTION
SOME PERSONNEL CHANGES AT NIAMS,
AND ACROSS THE NIH, AND I'LL
HIGHLIGHT NIH AND NIAMS
ACTIVITIES THAT MAY BE OF
GENERAL INTEREST.
I'LL START BY SHOWING YOU OUR
FINAL FISCAL YEAR 2024 FUNDING
PLAN.
AS WE'VE DISCUSSED PREVIOUSLY AT
THESE MEETINGS, THE DECISION TO
SET OUR PAYLINE AT THE 8th
PERCENTILE GIVES MORE
FLEXIBILITY TO LOOK CRITICALLY
AT GRANTS IT FUNDS.
WE'VE INTENDED TO FUND A
CONSISTENT NUMBER OF GRANTS
UNDER THIS NEW PROCESS, I'M
PLEASED TO ANNOUNCE WE'RE
FUNDING THE SAME NUMBER OF R01
GRANTS AS WE DID LAST YEAR.
SO MANY THANKS TO THE PROGRAM
DIRECTORS WHO SCRUTINIZE
PORTFOLIOS AND INCOMING
APPLICATIONS AS THEY IDENTIFY
MERITORIOUS GRANTS FOR US TO
INVEST INCREASINGLY LIMITED
DOLLARS IN.
FISCAL YEAR 2025 STARTS OCTOBER
1.
AND THE NIH, LIKE MANY OTHER
FEDERAL AGENCIES, IS LIKELY TO
BEGIN THE YEAR UNDER A
CONTINUING RESOLUTION, WHICH
MEANS WE'LL BE ALLOWED TO
OPERATE AT OR SLIGHTLY BELOW
FISCAL YEAR 2024 FUNDING LEVEL.
THIS TABLE SHOWS THE BUDGET
PROPOSALS FROM THE PRESIDENT AND
FROM THE SENATE APPROPRIATIONS
COMMITTEES.
THE HOUSE PROPOSED
APPROPRIATIONS FOR NIAMS IS NOT
SHOWN BECAUSE THE HOUSE
APPROPRIATIONS BILL INCLUDES A
PLAN FOR COMBINING MANY OF THE
INSTITUTES AND CENTERS AND
PROVIDES FUNDING FOR THIS NEW
STRUCTURE.
THE SENATE BILL KEEPS THE NIH
STRUCTURE THE SAME.
SO THE NEXT STEPS ARE FOR BOTH
CHAMBERS TO PASS RESPECTIVE
BUDGETS, HOUSE AND SENATE TO
WORK TOGETHER TO NEGOTIATE AND
PASS A SINGLE BILL FUNDING THE
NIH.
WHICH WILL THEN GO TO THE
PRESIDENT'S DESK FOR HIS
SIGNATURE.
MOVING TO STAFFING CHANGES AT
NIAMS, AT OUR MAY MEETING I
ANNOUNCED NIAMS DEPUTY DIRECTOR
DR. BOB CARTER IS RETIRING.
SADLY.
AND I'D LIKE TO SHARE WITH YOU
ALL THAT I AM SO DEEPLY GRATEFUL
FOR BOB'S COMMITMENT TO NIAMS
AND TO THE BROADER COMMUNITY,
HE'S BEEN A TREMENDOUS RESOURCE
TO ME DURING MY TRANSITION AND
DIRECTOR AND I'M GRATEFUL HE'S
WILLING TO CONTINUE AS ADVISER
TO THE INSTITUTE BEYOND HIS
RETIREMENT DAY.
BUT I HOPE YOU'VE HEARD WE'RE
ACCEPTING APPLICATIONS FOR THE
DEPUTY DIRECTOR POSITION THROUGH
THE END OF THIS MONTH.
THIS POSITION OFFERS A UNIQUE
AND EXCITING OPPORTUNITY FOR A
DYNAMIC INDIVIDUAL TO ASSIST ME
IN IMPLEMENTING INSTITUTE'S
STRATEGIC PLAN, MANAGING DAILY
OPERATIONS, AND SERVING AS
CHAMPION AND GUARANTOR OF THE
INTELLECTUAL AND ADMINISTRATIVE
ENVIRONMENT AT THE INSTITUTE.
I HOPE YOU'LL SHARE THIS
ANNOUNCEMENT WITH YOUR QUALIFIED
AND INTERESTED PEERS, AND
ENCOURAGE THEM TO APPLY BEFORE
THE SEPTEMBER 30 DEADLINE, WHICH
IS RIGHT AROUND THE CORNER.
NOW, RECRUITMENT OF THE
INSTITUTE'S NEXT SCIENTIFIC
DIRECTOR CONTINUES.
WE'VE INTERVIEWED EXCEPTIONAL
CANDIDATES, SPECIALIZING IN A
RANGE OF DISEASES AND CONDITIONS
OF INTEREST TO THE INSTITUTE,
WHO HAVE STRONG ADMINISTRATIVE
AND LEADERSHIP EXPERIENCE, AND
WE LOOK FORWARD TO ANNOUNCING WE
FILLED THE POSITION BEFORE OUR
NEXT COUNCIL MEETING.
THIS IS THE LAST COUNCIL MEETING
FOR DR. STEIN, ASSOCIATE
DIRECTOR FOR STRATEGIC
INITIATIVES, SHE'S ANNOUNCED
INTENTION TO RETIRE IN OCTOBER.
I FIRST MET SUSANA WHEN I WAS A
JUNIOR FACULTY MEMBER AND JOINED
NORTH AMERICAN RHEUMATOID
ARTHRITIS, SHE WAS THE LEAD FOR
NIAMS FOR THAT PROGRAM, I'VE HAD
THE OPPORTUNITY TO WORK WITH HER
FOR ALL OF THE YEARS SINCE THEN.
AND I UNDERSTOOD THEN AND
UNDERSTAND MUCH BETTER NOW THAT
SHE HAS LED MANY INITIATIVES
OVER HER CAREER AT THE NIH WITH
A MAJOR IMPACT ON SCIENCE OF THE
INSTITUTE, I'M GRATEFUL SUSANA
AGREED TO CONTINUE TO SUPPORT
THE INSTITUTE FOLLOWING HER
FORMAL RETIREMENT.
SO PLEASE JOIN ME IN THANKING
SUSANA FOR HER MANY YEARS OF
DEDICATED SERVICE WISHING HER
THE BEST IN HER NEXT CHAPTER.
AS WE PREPARE FOR THEIR
RETIREMENTS WE'RE PRIORITIZING
TRANSITION OF THEIR KEY PROJECTS
AND ENSURING NIAMS REMAINS
INTEGRATED INTO THE MANY
NIH-WIDE PROGRAMS AND
INITIATIVES WHERE THEY HAVE BEEN
PLAYING A LEADING ROLE.
WITH THAT IN MIND IT'S MY
PLEASURE TO WELCOME DR. ANNA
MAZZUCCO TO THE NIAMS OFFICE OF
DIRECTOR ON TEMPORARY DETAIL
THAT BEGAN THIS SUMMER.
SHE JOINS FROM THE NIH'S
DIVISION OF PROGRAM
COORDINATION, PLANNING, AND
STRATEGIC INITIATIVES, DPCPSI,
AS SENIOR ADVISER TO THE
DIRECTOR AFTER PREVIOUSLY
SERVING AS NIH ACTING ASSOCIATE
DEPUTY DIRECTOR IN THE IMMEDIATE
OFFICE OF THE NIH DIRECTOR.
SO THROUGH MID-OCTOBER, SHE WILL
HELP US WITH THE NIH HEAL
INITIATIVE, ACCELERATING
MEDICINES PARTNERSHIP, AMP AIM,
AND AMP SYSTEM BIOLOGY OF
INFLAMMATION PROGRAMS, COMMON
FUND SYSTEMS BIOLOGY, AND WHITE
HOUSE WOMEN'S HEALTH RESEARCH
INITIATIVE, AS YOU CAN SEE WE'RE
KEEPING ANNA BUSY.
IN DIVISION OF EXTRAMURAL
RESEARCH DR. RICARDO SABATI WILL
RETIRE AT THE END OF NEXT MONTH.
RICARDO LED OUR SKIN IMMUNOLOGY
AND DISEASES AND SKIN MICROBIOME
PROGRAM FOR MANY YEARS, STUDIED
A HIGHLY SUCCESSFUL EFFORT TO
ENCOURAGE RESEARCH.
WE WILL GREATLY MISS HIS
DEDICATION.
WE WISH HIM THE BEST.
OUR DIVISION OF EXTRAMURAL
RESEARCH ALSO WELCOMES DR.
BARBER, HERE WITH US TODAY, WHO
JOINS US AS A NEW PROGRAM
DIRECTOR FROM THE CENTERS FOR
DISEASE CONTROL AND PREVENTION,
HE LED A TEAM IN THE CHRONIC
DISEASE EPIDEMIOLOGY PROGRAM,
CHAIRED ART ARTHRITIS GROUP.
KAMIL HAS A Ph.D. FROM
UNIVERSITY OF PITTSBURGH, ALSO
RECEIVED A MASTER'S DEGREE IN
BIOSTATISTICS, HE ALSO HOLDS A
MASTER'S OF PUBLIC HEALTH DEGREE
FROM BROWN UNIVERSITY.
WELCOME, KAMIL.
THE NIH DIRECTOR DR. MONICA
BERTAGNOLLI ANNOUNCED THE
SELECTION OF DR. JERRY SONNEN
BERG OF THE UNIVERSITY OF
ILLINOIS CHICAGO, DIRECTOR OF
THE NIH OFFICE OF AIDS RESEARCH,
DR. DONEN BERG BRINGS 25 YEARSF
EXPERIENCE, SHE WILL JOIN NIH
THIS OCTOBER TO LEAD THE
ADVANCEMENT AND COORDINATION OF
THE HIV/AIDS RESEARCH ACROSS THE
NIH, EACH YEAR WE'RE FORTUNATE
TO RECEIVE ALLOCATED FUNDING
DIRECTLY FROM THE OFFICE OF AIDS
RESEARCH FOR EXTRAMURAL AND
INTRAMURAL HIV/AIDS RESEARCH IN
NIAMS MISSION AREAS.
AFTER MY REMARKS AND SUBSEQUENT
DISCUSSION WE'LL HEAR DIRECTLY
FROM DR. BERTAGNOLLI, WE'RE
THRILLED SHE MADE TIME TO JOIN
US TODAY.
SHE WILL TELL US ABOUT HER
PRIORITIES NIH-WIDE ACTIVITIES,
I'M GOING TO TAKE A FEW MINUTES
NOW TO UPDATE YOU ON THE WHITE
HOUSE WOMEN'S HEALTH RESEARCH
INITIATIVE THAT I MENTIONED AT
OUR MAY COUNCIL MEETING.
IN RESPONSE TO THIS INCREASED
INTEREST IN SUPPORTING RESEARCH
THAT WILL IMPROVE WOMEN'S LIVES,
NIH HAS COMMITTED TO INVESTING
$200 MILLION IN NEW
INTERDISCIPLINARY WOMEN'S HEALTH
RESEARCH FISCAL YEAR 2025.
WE EXPECT MANY OF THESE
APPLICATIONS WILL COME THROUGH
THE NOTICE OF SPECIAL INTEREST,
NOSI, ON WOMEN'S HEALTH
RESEARCH, THAT NOTICE NUMBER IS
HERE ON THE SCREEN, OD-24-079,
NIAMS IS PARTICIPATING.
OTHER INSTITUTES AND CENTERS
ISSUED THEIR OWN NOFOs, AND
WE'RE PARTICIPATING IN SOME OF
THESE AND WILL FUND MERITORIOUS
APPLICATIONS UNDER THEM AS
APPROPRIATE.
I WANT TO THANK DEEPLY DOCTORS
GAYLE LESTER, CHRISTY NIX
DR. KAPLAN, AND JANELLE DRUGAN
AND ANNA MAZZUCCO.
THIS NEXT SLIDE SHOWS PREVIEW OF
THE NEW GRANTS.NIH.COM HOME PAIN
RELEASED THIS MONTH.
THE UPDATED PAGE WAS DEVELOPED
WITH THE GRANTEE COMMUNITY IN
MIND BASED ON WEBSITE USAGE
DATA, AND SURVEY RESPONSES OVER
THE YEARS.
NEW NAVIGATION ELEMENTS WILL BE
CLEARER AND LESS COMPLEX THAN
BEFORE.
THE REENVISIONED NIH GUIDE TO
GRANTS AND CONTRACTS REDUCES
NEED FOR POTENTIAL APPLICANTS TO
UNDERSTAND NIH ACTIVITY CODES,
TO FIND NOTICE OF FUNDING
OPPORTUNITY, AND YOU CAN EVEN
EXPECT A STREAMLINED DESIGN OF
THE HOW TO APPLY APPLICATION
GUIDE PAGE.
PLEASE STAY TUNED THROUGH NIAMS
AND NIH COMMUNICATION CHANNELS
TO LEARN WHEN NIH LAUNCHES THESE
CHANGES WHICH WILL BE A GREAT
HELP TO OUR COMMUNITY.
IN MAY, I MENTIONED THE NIH
COMMON FUND LAUNCHED A PROGRAM
TO CATALYZE DEVELOPMENT,
STANDARDIZATION, VALIDATION AND
USE OF HUMAN-BASED NEW APPROACH
METHODOLOGIES, NAMs, AND
ANNOUNCED THE NIH MADE THREE
CHALLENGE AWARDS UNDER THE
PROGRAM TO PROJECTS IN
OSTEOPOROSIS, RHEUMATOID
ARTHRITIS, SKIN BIOLOGY.
MORE RECENTLY, NIH ANNOUNCED
INTENTION TO ISSUE A NEW NOFO
THAT WILL SUPPORT NAMs, THAT
IS NEW APPROACH METHODOLOGIES,
TECHNOLOGY DEVELOPMENT CENTERS,
SO NAMs TECHNOLOGY DEVELOPMENT
CENTERS, THAT WILL STIMULATE
DEVELOPMENT OF COMBINATORIAL
NAMs TO SUPPORT AREAS OF
GREATEST NEED.
PLEASE SHARE THIS OPPORTUNITY
WITH YOUR COLLEAGUES WHO CAN
CONTRIBUTE TO THIS EFFORT.
NIH IS ALSO FORMALLY REQUESTING
FEEDBACK FROM THE COMMUNITY TO
INFORM THREE RECOMMENDATIONS
FROM THE ADVISORY COMMITTEE TO
THE DIRECTOR ON REENVISIONING
NIH SUPPORTED POSTDOCTORAL
TRAINING.
THE COMMITTEE IDENTIFIED SIX
HIGH LEVEL TOPICS WITH
RECOMMENDATIONS FOR ACTION ITEMS
UNDER EACH ONE, NIH IS FOCUSING
CURRENTLY EFFORTS ON THE THREE
LISTED HERE ON THIS SLIDE.
IF YOU'D LIKE TO PROVIDE INPUT,
PLEASE DO SO BY THE DEADLINE OF
OCTOBER 23.
AND AGAIN I ENCOURAGE YOU TO
SHARE THIS OPPORTUNITY WITH YOUR
COLLEAGUES SO THAT NIH CAN HEAR
FROM AS WIDE A SWATH OF THE
BIOMEDICAL RESEARCH COMMUNITY AS
POSSIBLE ABOUT THESE VERY
IMPORTANT ISSUES.
THOSE WHO WERE AT OUR LAST
MEETING RECALL OUR PRESENTATION
ON PATIENT ENGAGEMENT.
THE NEXT FEW ITEMS I'LL DESCRIBE
PROVIDE EXAMPLES OF WAYS WE'RE
ENGAGING WITH THE BROADER
COMMUNITY, A TOPIC IN THE LATEST
DIRECTOR'S LETTER AND FROM THIS
AFTERNOON WHEN WE'RE HEAR FROM
DR. ROBERT WALKER, NIAMS CHIEF
DIVERSITY OFFICER, DR. SHANNON
ZENK, DIRECTOR OF NATIONAL
INSTITUTE OF NURSING RESEARCH,
DR. MONICA WEBB HOOPER, DEPUTY
DIRECTOR OF THE NATIONAL
INSTITUTE OF MINORITY HEALTH AND
HEALTH DISPARITIES, AND DR.
KAREEM WATSON, CHIEF OF
COMMUNITY ENGAGEMENT FOR THE
"ALL OF US" RESEARCH PROGRAM.
THANKS TO A PARTNERSHIP WITH THE
NATIONAL SCLERODERMA FOUNDATION
WE'RE DELIGHTED TO ANNOUNCE AMP
AIM PROGRAM IS LAUNCHING A PILOT
EFFORT TO EXPLORE SCLERODERMA.
AMP AIM INVESTIGATORS SEEK TO
IDENTIFY AND DEFINE INFLAMMATORY
PATHWAYS THAT AUTOIMMUNE
DISEASES HAVE IN COMMON, AS WELL
AS CELLULAR AND MOLECULAR
FACTORS UNIQUE TO SPECIFIC
DISEASES.
WE ALWAYS INTENDED TO EXPAND AMP
AIM TO INCLUDE OTHER DISEASES
AND WE'RE DELIGHTEDs TO
PARTNER WITH GROUPS OUTSIDE THE
NIH TO MAKE THIS VISION A
REALITY.
THE SCLERODERMA DATA LIKE ALL
OTHER DATA FROM AMP AIM AND RA
LUPUS PROGRAM WILL BE AVAILABLE
TO THE PUBLIC THROUGH THE ARK
PORTAL.
IN ADDITION TO SUPPORTING
RESEARCH, CREATING AND
DISSEMINATING INFORMATION AND
RESOURCES IS A CORE PART OF THE
NIAMS MISSION, AS IS TRAINING OF
BASIC AND CLINICAL SCIENTIST TO
STUDY JOINT, WON'T, SKIN HEALTH
DISEASE.
AS WE THINK ABOUT HOW TO ATTRACT
FUTURE RESEARCHERS TO THE
WORKFORCE, NIAMS IS WORKING TO
REACH A MUCH YOUNGER AUDIENCE.
WE PUBLISHED NEW SCIENCE-BASED
CLASSROOM MATERIALS AND
ACTIVITIES FOR TEACHERS TO BUILD
LESSON PLANS ON BONE, JOINTS,
MUSCLES, AND SKIN, FOR STUDENTS
IN GRADES 4-6.
EACH TOPIC INCLUDES CLASSROOM
READY INFORMATION, VISUAL AIDS,
VOCABULARY, QUIZZES, AND A
TEACHER'S CORNER TO EXPLAIN.
MY SISTER, AN ELEMENTARY SCHOOL
TEACHER, THINKS THESE MATERIALS
ARE FANTASTIC AND IS ALREADY
EMPLOYING THEM IN HER CLASSROOM.
SO, SPECIAL THANKS TO
MS. COLLEEN LABEE AND OTHERS FOR
DEVELOPING THESE IMPORTANT
RESOURCES.
I RECENTLY HAD THE OPPORTUNITY
TO PARTICIPATE IN THREE EVENTS
INVOLVING PATIENTS, THEIR
FAMILIES, AND ORGANIZATIONS THAT
SUPPORT THEM.
TWO DAYS AFTER THE LAST COUNCIL
MEETING, I PROVIDED OPENING
REMARKS FOR AN EVENT
COMMEMORATING 30 YEARS OF LUPUS
RESEARCH AT THE NIH CLINICAL
CENTER.
MANY THANKS TO THE D.C. LUPUS
CONSORTIUM THAT FACILITATES
COLLABORATION, FOR SPONSORING
AND FOR CONTRIBUTIONS TO
IMPROVING LIVES OF LUPUS
PATIENTS IN THE D.C. AREA, AND
AROUND THE WORLD.
IN JUNE, I SPOKE AT THE NATIONAL
ALOPECIA FOUNDATION CONFERENCE,
I MET MANY PATIENTS AND THEIR
FAMILIES.
THE MIDDLE PICTURE SHOWS ME WITH
THE NATIONAL FOUNDATION CEO, AND
A BRAVE BARBIE THAT HIGHLIGHTS
HAIR LOSS DUE TO CHEMOTHERAPY OR
ILLNESS.
A REPRESENTATIVE FROM
MASSACHUSETTS ALSO SPOKE AT THE
EVENT.
ON CHRONIC DISEASE AWARENESS
DAY, I PARTICIPATED IN A
CONGRESSIONAL BRIEFING SPONSORED
BY GOOD DAYS, AN ORGANIZATION
HELPING PEOPLE WITH CHRONIC
ILLNESS, OTHER SPEAKERS WERE DR.
KAREN HACKER, DIRECTOR OF NCATS
OFFICE OF TRANSLATIONAL
MEDICINE, DR. JOSH BESSELL, AND
HEREDITARY ANGIODEMA MANAGER
JEFF MYERS, AND REPRESENTATIVE
JIM MCGOVERN WHO LIKE
REPRESENTATIVE PRESLEY ALSO
REPRESENTS MASSACHUSETTS.
OVER THE PAST TWO YEARS,
COMMUNITY ENGAGEMENT HAS PLAYED
AN ESSENTIAL ROLE IN SHAPING OUR
UPCOMING FISCAL YEARS 2025 TO
2029 STRATEGIC PLAN.
THROUGH THREE REQUEST FOR
INFORMATION AND THREE-DAY
VIRTUAL IDEA GENERATION MEETING,
SHOWN HERE IN DARK BLUE, WE'VE
ENSURED THAT WE'VE CAPTURED A
WIDE RANGE OF IDEAS FROM
RESEARCHERS, PATIENT-FOCUSED
ORGANIZATIONS, PROFESSIONAL
SOCIETIES, AND OTHERS INTERESTED
IN NIAMS ACTIVITIES.
WE ALSO HEARD FROM YOU, ADVISORY
COUNCIL DURING THE PUBLIC
SESSION OF VARIOUS MEETINGS, AND
ARE PLEASED TO PRESENT THE
COMPLETE PLAN FOR DISCUSSION
TODAY.
ONCE WE'VE INCORPORATED YOUR
FEEDBACK, THE NEXT STEPS ARE
INDICATED IN BEIGE ITALICS ON
THE SLIDE.
FOLLOWING VARIOUS ADMINISTRATIVE
CLEARANCES, WE'LL PUBLISH THE
PLAN IN A USER FRIENDLY
WEB-BASED DESIGN AND VISUALLY
APPEALING PDF DOCUMENT BY THE
END OF CALENDAR YEAR.
FINALLY, IMPORTANTLY, WE'LL POST
PROGRESS ON THE VARIOUS
PRIORITIES ON THE NIAMS WEBSITE
AT THE END OF EACH FISCAL YEAR.
AS BEFORE, WHEN DR. BURROWS
PRESENTED IN MAY, AND AS YOU
SAW
IN THE DRAFT DARREN PROVIDED,
PLAN ARTICULATES FOUR GOALS AND
TEN PRIORITIES TO ADVANCE OUR
MISSION.
I'LL GO THROUGH THEM BRIEFLY FOR
THE BENEFIT OF THE MEMBERS OF
THE PUBLIC WATCHING ONLINE, AND
DON'T HAVE ACCESS TO THE DRAFT
THAT YOU ALL RECEIVED.
AS A REMINDER, THE PRIORITIES
GOING INTO THE STRATEGIC PLAN
REFLECT CURRENT VIEWS OF
RESEARCH AND PATIENT COMMUNITY
TODAY.
HOWEVER, WE REALIZE OF COURSE
SCIENCE CHANGES QUICKLY.
SO THE INSTITUTE NEEDS TO REMAIN
RECEPTIVE TO FUNDING THE BEST,
MOST PROMISING APPLICATIONS OVER
THE NEXT FIVE YEARS EVEN IF
THEIR TOPICS MOVED BEYOND NEEDS
WE IDENTIFIED WHEN WE DEVELOPED
THE PLAN.
THEREFORE WE'RE ENCOURAGING
RESEARCH COMMUNITY TO THINK
CREATIVELY ABOUT NEEDS THAT
NIAMS COULD ADDRESS, RELATED TO
FOUR OVERARCHING GOALS.
THESE INCLUDE ADVANCING THERAPY
DEVELOPMENT FOR EVERYONE BY
IDENTIFYING HUMAN BIOLOGICAL,
BEHAVIORAL, ENVIRONMENTAL
FACTORS THAT AFFECT HEALTH,
DISEASE, PATIENT EXPERIENCE, AND
TESTING INTERVENTIONS IN PEOPLE
WITH ARTHRITIS AND
MUSCULOSKELETAL AND SKIN
DISEASES.
SECOND, FOSTERING DISCOVERIES TO
IMPROVE HUMAN HEALTH WITH
RELEVANT PRE-CLINICAL MODELS,
AND COMPUTATIONAL BIOLOGY
APPROACHES.
THREE, SUPPORTING NECESSARY
INFRASTRUCTURE, ROBUST DIVERSE
RESEARCH WORKFORCE CAPABLE OF
CONDUCTING ALL TYPES OF STUDIES
INCLUDING INTERDISCIPLINARY
RESEARCH AND TEAM SCIENCE.
FOURTH, COMMUNICATING TIMELY AND
RELEVANT ADVANCES TO PATIENTS,
COMMUNITIES, SCIENTISTS.
THESE GOALS ARE INTENDED TO
REMAIN CURRENT AND OVERARCHING
EVEN IF OPPRESSING RESEARCH
TOPIC DOESN'T ADDRESS ONE OR
MORE OF THE CURRENT PRIORITIES.
HOWEVER, BASED ON WHAT WE HEARD
FROM THE COMMUNITY ABOUT THE
STATE OF THE SCIENCE AND
RESEARCH NEEDS AND OPPORTUNITIES
AVAILABLE TODAY, THE PLAN
ARTICULATES SIX RESEARCH
PRIORITIES.
THESE INCLUDE STUDYING MOLECULAR
AND CELLULAR MECHANISMS OF
HEALTH AND DISEASE IN HUMANS,
UNDERSTANDING THE RESULTING
PHENOTYPES AND ENDOTYPES.
DEVELOPING REGENERATIVE MEDICINE
APPROACHES TO FACILITATE REPAIR
OR RESTORATION OF TISSUE.
USING DATA SCIENCE, ARTIFICIAL
INTELLIGENCE AND MACHINE
LEARNING, COMPUTATIONAL BIOLOGY
TO ADVANCE KNOWLEDGE AND
TREATMENT.
UNDERSTANDING BEHAVIORS AND
ENVIRONMENTAL EXPOSURES THAT
PROMOTE HEALTH OR CAUSE DISEASE.
TRANSLATING FINDINGS INTO
INTERVENTIONS THROUGH CLINICAL
AND EPIDEMIOLOGICAL STUDIES.
AND CONDUCTING RESEARCH TO
ADDRESS HEALTH DISPARITIES AND
IMPROVE HEALTH EQUITY.
EACH OF THESE PRIORITIES APPLY
TO OUR FIVE DISEASE AND
TISSUE-SPECIFIC MISSION AREAS,
AND WE'LL MONITOR PROGRESS TO
SEE WHERE WE CAN ACCELERATE
IMPORTANT ADVANCES.
SOME OF THE NEEDS AND
OPPORTUNITIES IDENTIFIED THE
COMMUNITY AND PART OF OUR
MISSION REQUIRE MECHANISMS OTHER
THAN STANDARD R01 PROJECT
GRANTS.
WE DIVIDED THESE INTO THREE
CAPACITY-BUILDING PRIORITIES WE
CAN SUPPORT INTRAMURALLY AND
EXTRAMURALLY AND OPERATIONAL
PRIORITIES.
THREE CAPACITY BUILDING
PRIORITIES ARE DEVELOPING,
ENABLING RESEARCH INFRASTRUCTURE
INCLUDING TECHNOLOGIES AND MODEL
SYSTEMS; SUPPORTING
INTERDISCIPLINARY RESEARCH, TEAM
SCIENCE AND PARTNERSHIP; AND
PROMOTING TRAINING AND A ROBUST
INCLUSIVE WORKFORCE.
AND WE ARTICULATED INFORMATION
DISSEMINATION COMPONENT OF OUR
MISSION ASPIRATIONAL PRIORITY,
CONDUCTING INFORMATION
DISSEMINATION AND ENGAGEMENT
ACTIVITIES.
I HOPE YOU ALL HAD THE
OPPORTUNITY TO REVIEW THE
VERSION OF THE PLAN THAT DARREN
SENT YOU.
I PLAN TO GIVE REMAINDER OF MY
TIME FOR YOU TO SHARE YOUR
THOUGHTS ABOUT IT, OR ANY OTHER
TOPIC THAT'S ON YOUR MIND TODAY.
NOW, I ALSO WANT TO NOTE WE'LL
ALSO TAKE YOUR WRITTEN COMMENTS
ABOUT THE PLAN, SEND TO DARREN
BY SEPTEMBER 24.
YOU HAVE A LITTLE BIT MORE TIME
TO REVIEW AND REFLECT ON THE
PLAN AND PROVIDE YOUR INPUT.
SO THANK YOU AGAIN FOR YOUR
SERVICE TO THE INSTITUTE, AND I
LOOK FORWARD TO HEARING FROM
YOU.
I'M GOING TO STOP SHARING FOR
OPEN DISCUSSION.
BEFORE 10:45 I'LL BRING UP
ANOTHER SLIDE TO INTRODUCE DR.
MONICA BERTAGNOLLI.
WE HAVE THE TIME BETWEEN NOW AND
THEN TO HEAR YOUR COMMENTS ABOUT
THE STRATEGIC PLAN OR ANYTHING
ELSE YOU'D LIKE TO SHARE.
I CAN ALSO JUST SAY I WELCOME MY
NIAMS COLLEAGUES AND STAFF
MEMBERS HERE TO MAKE ADDITIONAL
COMMENTS ABOUT ANY OF THE POINTS
THAT I MADE THAT THEY THINK
MIGHT BE OF INTEREST TO YOU.
THOSE BEHIND ME, PLEASE FEEL
FREE TO COME UP TO AN EMPTY
CHAIR AND SHARE SOME COMMENTS IF
YOU'D LIKE.
BUT, YEAH, LOOKS LIKE YOU'RE
READY.
>> I THINK THE STRATEGIC PLAN
LOOKS FANTASTIC.
I MEAN, I THINK IT'S AN
INCREDIBLY EXCITING TIME IN
SCIENCE.
WE HAVE SO MUCH CAPABILITY IN
FRONT OF US.
WE'RE ONLY LIMITED BY THE
OBVIOUS THINGS LIKE CONVINCING
THE GOVERNMENT TO GIVE US ALL
MORE MONEY TO DO SCIENCE WITH.
I'M -- ONE OF THE JOBS I DO, I'M
EDITOR IN CHIEF OF THE JOURNAL
OF CLINICAL INVESTIGATION, SO
WITH THAT I GET TO SEE 4,000
PAPERS A YEAR THAT WE SEE SO
IT'S GIVING ME A VERY BROAD VIEW
ON WHAT SCIENCE LOOKS LIKE RIGHT
NOW.
AND I REALLY LIKE THE EMPHASIS
ON THE INTERDISCIPLINARY AND
TEAM SCIENCE.
I THINK THAT'S A CRITICALLY
IMPORTANT PART OF WHAT WE DO
GOING FORWARD.
WE LOOK AT PAPERS, WE LOVE
PAPERS THAT HAVE ELEMENTS OF
HUMAN DISEASE, HUMAN OUTCOMES,
MODELING, APPROPRIATE MODEL, AND
I THINK WE'LL SEE MORE AND MORE
OF THAT IN THE FUTURE BECAUSE
IT'S HOW WE DO THE BEST SCIENCE
AND COME ONE CONCLUSIONS
PREDICTED FOR WHAT HUMAN DISEASE
IS GOING TO LOOK LIKE.
ONE OF THE THINGS I KNOW WE HAD
TALKED ABOUT THIS A LITTLE BIT
IN THE PAST, I THINK YOU WANT TO
MAKE SURE THAT AS YOU THINK
ABOUT YOUR FUNDING STRATEGIES
THOSE ARE WELL ALIGNED WITH WHAT
STRATEGIC GOALS ON.
IN PARTICULAR, I KNOW THERE HAS
BEEN SOME EMPHASIS ON LIMITING
THE NUMBER OF GRANTS THAT
INVESTIGATORS CAN HAVE THROUGH
NIAMS.
SO I WOULD BE CAUTIOUS IN DOING
THAT BECAUSE TEAM SCIENCE IS
REALLY VERY DIFFERENT, AND THIS
INTERDISCIPLINARY OFTEN YOU HAVE
INDIVIDUALS WHO ARE MULTIPLE
P.I. GRANTS.
I DO A LOT WITH NHGRI, WHERE WE
SEE THIS ALL THE TIME, IT'S NOT
UNUSUAL TO HAVE LOTS OF
INVESTIGATORS SERVING AS POI
--
P.I. BECAUSE YOU NEED THAT
DIVERSE EXPERTISE TO ACHIEVE
GOALS OF THE SCIENCE.
THINKING ABOUT YOUR STRATEGIES
AND LIMITING APPLICATIONS FOR OR
LIMITING FUNDED APPLICATIONS FOR
SPECIFIC INVESTIGATORS, I WOULD
STRONGLY ENCOURAGE CONSIDERING
THOSE MULTI-P.I. GRANTS IN A
DIFFERENT WAY BECAUSE OTHERWISE
YOU'RE GOING TO BE AT ODDS
TRYING TO ACHIEVE
INTERDISCIPLINARY AND TEAM
SCIENCE.
>> YEAH, THANK YOU FOR THOSE
COMMENTS, INCLUDING SOME OF THE
ISSUES WE NEED TO CONTINUE TO
CONSIDER MOVING FORWARD.
APPLICATIONS IS A GREAT EXAMPLE.
WE'RE TRYING TO BALANCE A LOT OF
CONSIDERATIONS ENSURING THAT WE
SPREAD THE RESOURCES AVAILABLE
TO US AS BROADLY AND EQUITABLY
AS POSSIBLE BUT WE ALSO WANT TO
MAKE SURE THAT PERHAPS THE
CO-INVESTIGATOR ROLE
APPLICATIONS CAN BECOME A MORE
MEANINGFUL ROLE BECAUSE THE
LIMITATION IS NOT THE
INVESTIGATOR STATUS, I HOPE THIS
PROVIDES AN OPPORTUNITY TO
HIGHLIGHT IMPORTANT
CONTRIBUTIONS OF THE ENTIRE
TEAM, NO THE SIMPLY THE FORMAL
P.I.s, BUT REALLY DIFFICULT
BALANCING ACT WE'RE TRYING TO
ACHIEVE AND YOU MIGHT WANT TO --
THIS IS ANOTHER ISSUE YOU COULD
RAISE WITH DR. BERTAGNOLLI TO
GET HER THOUGHTS.
SHE'S CERTAINLY INTO
INTERDISCIPLINARY AND TEAM
SCIENCE.
THANKS FOR SHARING YOUR
THOUGHTS.
BOB, PLEASE.
>> AN IMPORTANT SUBJECT, QUITE
PRACTICAL, IT HAS COME UP
RECENTLY MAKING FUNDING
DECISIONS.
THE DANGER THEN IS THAT SENIOR
PERSON WHO WANTS TO HAVE MORE
THAN SOME X NUMBER OF GRANTS
JUST MAKES ALL THEIR GRANTS
MPIs, WOULD BE EXEMPTED.
WE WANT TO AVOID GAMING OF THE
SYSTEM LIKE THAT.
BUT THE QUESTION THEN WOULD BE,
AND THIS GOES TO WHAT LINDSEY
WAS SAYING, IN SOMEBODY WHO HAS
GOT, LET'S SAY, THREE R01s
ALREADY, DO THEY REALLY NEED TO
BE MPI ON THE FOURTH AS OPPOSED
TO CO-INVESTIGATOR?
SO, I COMPLETELY AGREE WITH THE
PREMISE THAT YOU'RE TALKING
ABOUT, WHICH IS GOD KNOWS I
SPEND ALL MY TIME TRYING TO GET
TEAMS TO WORK TOGETHER.
I REALLY DO MEAN 90% OF MY TIME
BECAUSE I DON'T HAVE ANYBODY.
I'VE GOT ONE PERSON WHO SUPPORTS
ME, EVERYTHING ELSE I DO IS
TRYING TO GET PEOPLE TO WORK
TOGETHER ON THEIR OWN.
SO IT'S REALLY COMPLETELY AGREE
WITH YOUR PREMISE.
THE QUESTION THEN WOULD BE GIVEN
THE TRADEOFFS BETWEEN WANTING TO
DISTRIBUTE THE WEALTH, WANTING
TO DISTRIBUTE PEOPLE WHO GET
RECOGNITION, IF SOMEBODY HAS
THREE R01-EQUIVALENT GRANTS IS
IT IMPORTANT THEY ALSO BE ABLE
TO COME IN WITH A FOURTH AS MPI
OR IS THAT TRADEOFF NOT
NECESSARY IN ORDER THAT WE DO
HAVE WAYS OF SPREADING THE
WEALTH?
IS MY QUESTION CLEAR?
>> YEAH, I THINK IT HAS TO DO
WITH THE TYPE OF SCIENCE, THAT'S
WHAT I WOULD THINK IS ONE OF THE
CONSIDERATIONS YOU WOULD WANT TO
HAVE IN PLACE.
AGAIN, I DO A LOT WITH NHGRI, WE
DON'T -- THE TYPES OF THINGS
THAT THEY ARE DOING REQUIRE SUCH
BROAD EXPERTISE THAT CAN'T BE
ACHIEVED, YOU NEED -- YES, IT'S
ABSOLUTELY TRUE.
I'VE BEEN PART OF THE ELECTRONIC
MEDICAL RECORDS AND GENOMICS
CONSORTIUM.
WE NOW HAVE THE GENOMIC LEARNING
HEALTH SYSTEM.
THESE ARE JUST AREAS WHERE YOU
NEED HAVE A CLINICIAN WITH
KNOWLEDGE OF GENETICS AND HAVE
IMPLEMENTATION SCIENTISTS AND
PEOPLE WHO KNOW ABOUT LEARNING
HEALTH SYSTEMS , THAT'S NEVER OE
IMPORTANT.
WITH -- THAT'S NEVER ONE PERSON.
WE'VE INVESTED IN GENERATING
LARGE DATASETS RIGHT NOW AND
NEED INFORMATICIANS WHO ALSO
HAVE DOMAIN KNOWLEDGE TO BE ABLE
TO TRANSLATE THOSE.
I THINK WE HAVE THIS HUGE
TRANSLATIONAL GULF RIGHT NOW
BETWEEN LARGE DATASETS AND
DISTILLING DOWN TO SCIENCE AND
MEANINGFUL CLINICAL OUTCOMES.
AND THAT IS SOMETHING THAT
REALLY REQUIRES TEAM SCIENCE TO
DO.
AND YOU CAN'T DO THAT WITH JUST
A CO-I STATUS.
THE QUALITY OF TEAM, YOU HAVEN'T
GIVEN THE INFORMATICIANS PROPER
SEAT AT THE TABLE AND THEY NEED
THAT TO ENGAGE AND DEVELOP
DOMAIN KNOWLEDGE IN THOSE AREAS.
THAT'S WHERE I SEE -- YOU HAVE
LOTS OF PEOPLE WHO OPERATE AT
THIS LEVEL BUT TO GET GOOD AND
DO THAT TRANSLATION THEY HAVE TO
COMMIT TO HAVING CERTAIN DOMAIN
KNOWLEDGE AS WELL.
AND I JUST, YOU KNOW, I LIVE IN
BOTH WORLDS, I CAN TELL YOU, YOU
DON'T SEE THAT UNLESS YOU REALLY
HAVE THOSE TEAMS FUNCTIONING
TOGETHER AND MEETING EVERY DAY
AND TALKING AND PUSHING THE
SCIENCE AND MAKING IT GO
FORWARD.
SO I THINK IT'S REALLY ABOUT
CERTAIN TYPES OF SCIENCE AND SO
I WOULD JUST SUGGEST HAVING A
LITTLE MORE CONSIDERATION AND
NUANCE OF WHAT IT TAKES BECAUSE,
AGAIN, WE WANT TO SEE THESE
LARGE DATASETS COME TO
MEANINGFUL SCIENCE THAT
TRANSLATES TO WHAT HELPS
PATIENTS THAT WE CAN SEE REAL
OUTCOMES WITH AND WE'RE NOT
GOING TO GET THERE UNLESS -- YOU
KNOW, ON INDIVIDUALS ALONE.
IT'S TEAM SCIENCE.
>> YOU KNOW, I THINK THERE'S A
LOT OF CULTURE CHANGE THAT HAS
TO HAPPEN IN THE CONTEXT OF
THIS.
I'M REMINDED OF A RELATED ISSUE
I HOPE INCREASINGLY INSTITUTIONS
WILL INCREASINGLY RECOGNIZE
INCREDIBLE CONTRIBUTION OF
CO-INVESTIGATORS, NON-P.I.s, I
WAS DELIGHTED TO SEE RECENTLY A
VERY TALENTED BIOINFORMATICIAN,
WHO WAS WELL FUNDED, WITH NOT A
SINGLE GRANT AS P.I., WHO WAS
HIGHLY SUCCESSFUL GETTING
PROMOTED TO ASSOCIATE PROFESSOR.
SO THIS IS A BIOINFORMATICIAN,
INVOLVED IN TEAM SCIENCE
INITIATIVES, CONTRIBUTING NOT AS
A P.I. BUT WELL FUNDED AND
RECOGNIZED AS BEING SUCCESSFUL.
SO I THINK CULTURAL CHANGE,
RECOGNITION OF CO-INVESTIGATORS,
HAVE A CRITICAL ROLE TO PLAY,
RECOGNIZING WILL HELP ADDRESS
CURRENT OBSTACLES.
I DON'T RECALL THE DETAILS BUT I
WAS PLEASED TO SEE KIND OF ALONG
THOSE LINES NCI HAS A SPECIAL
FUNDING MECHANISM FOR
CO-INVESTIGATORS.
>> YEAH.
>> RECOGNIZING THAT, YOU KNOW,
IT'S NOT ABOUT SIMPLY THE
P.I.s BUT YOU NEED THE WHOLE
TEAM, WHETHER RECRUITING
PATIENTS OR PHENOTYPING PATIENTS
OR ANALYZING THE DATA, SO I
THOUGHT THAT WAS VERY FORWARD
LOOKING TO RECOGNIZE THAT AS
CRITICALLY IMPORTANT ROLE AND TO
PROVIDE US MECHANISM FOR
INDEPENDENT FUNDING FOR THAT
ROLE.
>> I JUST WANT TO SAY I'M BIASED
AT NORTHWESTERN BECAUSE WE'RE
AHEAD OF THE CURVE.
WE'VE HAD A ROBUST TEAM SCIENCE
FACULTY TRACK FOR ALMOST TEN
YEARS NOW, AND WE HAVE
INDIVIDUALS WHO HAVE THOSE NCI
GRANTS AND IT HAS BEEN WONDERFUL
FOR THEM AND SO I'M SEEING A LOT
OF THOSE INDIVIDUALS WHO ARE
TEAM SCIENTISTS.
WE DEVELOPED IT FOR OUR
EPIDEMIOLOGY COLLEAGUES, I MEAN,
I DO HUMAN GENETICS, I LEAD THE
HUMAN GENETICS ISSUE, I'M
SENSITIVE TO THE ISSUE BECAUSE
IT'S IMPORTANT FOR THEM TO
ADVANCE THINGS.
WE'VE SEEN A NUMBER OF PEOPLE GO
THROUGH PROMOTION JUST AS YOU
DESCRIBED, IT'S NOT CRITICAL BUT
IN SOME AREAS -- IT'S NOT
CRITICAL THEY BE MPI, CO-I
STATUS IS FINE, BUT WHERE HE SEE
DEFICIENCY THEY DON'T DEVELOP
DOMAIN KNOWLEDGE TO ADVANCE THE
SCIENCE TO THE NEXT LEVEL.
WE HAVE TO ALLOW FOR THAT.
>> SPECIFIC AND MAYBE A GLOBAL
COMMENT ABOUT FELLOWSHIP
LIMITING TO FIVE YEARS, I'M IN
SUPPORT OF THE PRINCIPLE
ADVANCING TO SUBSEQUENT PHASES
OF CAREER BUT SPECIFICALLY THIS
PARTICULAR GROUP OF POSTDOCTORAL
FELLOWS WHO STARTED IN 2019 TO
2024 WERE MAXIMALLY AFFECTED BY
THE PANDEMIC, SUFFERED DELAYS IN
RESEARCH THAT MADE IT
CHALLENGING AS A STRICT POINT
RIGHT NOW IN TIME.
BUT ABSENT THAT SPECIFIC EXAMPLE
I THINK THE GLOBAL QUESTION IS
MORE, YOU KNOW, WHAT IS THE
OVERALL PLAN FOR SUPPORTING
THESE POSTDOCTORAL SCHOLARS
GOING FORWARD BECAUSE THERE ARE
NOT ENOUGH FACULTY POSITIONINGS
IN ACADEMIA TO TAKE IN ALL THE
POSTDOCTORAL FELLOWS AND
WONDERING IF THERE WAS ANY SORT
OF THOUGHT CREATED TO CREATING
EXTRAMURAL GROUP OF STAFF
SCIENTISTS AND SUPPORT
STRUCTURES, PARTICULARLY IN
EXPENSIVE CITIES, HOUSING
SUPPLEMENTS, IN SOME CASES
MEDICAL BENEFITS THAT AREN'T THE
SAME WHEN YOU BECOME A STAFF
SCIENTIST.
SO THAT'S THE INCENTIVE
SOMETIMES FOR PEOPLE TO WANT TO
STAY IN A POSTDOCTORAL
FELLOWSHIP POSITION.
SO I'M TRYING TO THINK HOW WE
THINK ABOUT THE GLOBAL WORKFORCE
BECAUSE ONCE THEY GO TO THAT
STAFF SCIENTIST POSITION IT
FALLS INVESTIGATOR GRANT,
RECEIVING 12% BUDGET CUTS EVERY
YEAR WHILE SALARIES ARE
INCREASING, WE'RE PUSHING PEOPLE
OUT OF ACADEMIC INTO INDUSTRY TO
MAKE THE SALARY TO SUPPORT
THEMSELVES.
>> SUCH A COMPLICATED ISSUE.
THERE ARE GOING TO BE PROFOUND
IMPLICATIONS AND ADJUSTMENTS
THAT WILL BE REQUIRED OVER MANY
YEARS.
FOR THOSE THAT WEREN'T PRESENT
FOR EARLIER COUNCIL MEETINGS,
THESE RECOMMENDATIONS CAME OUT
OF THE WORKING GROUP OF THE
ADVISORY COMMITTEE TO THE
DIRECTOR, THAT IS THE NIH
DIRECTOR, AND RECEIVED A LOT OF
ATTENTION.
ANY OF THESE CHANGES WE'RE
MAKING HAS IMPLICATIONS AND DOWN
SIDES.
FOR EXAMPLE, ONE OF THE
IMPLICATIONS OF INCREASING
SALARIES, FEWER SPOTS CAN BE
OFFERED BECAUSE WHERE IS THE
MONEY GOING TO COME FROM?
THERE ARE OTHER ISSUES LIKE
BENEFITS OF POSTDOCTORAL
FELLOWS, ON THAT NOTE I THINK
THE NIH OFFERS A GOOD EXAMPLE IN
SUM RESPECTS HAVING OTHER TRACKS
ASIDE FROM PRINCIPAL
INVESTIGATORS HAVING STAFF
SCIENTISTS AND CLINICIANS
ALLOWING CAREER TO PROGRESS
BEYOND POSTDOCTORAL TRAINING,
WE'LL SEE MORE OF THOSE
POSITIONS IN ACADEMIC
INSTITUTIONS BUT, RIGHT, WE HAVE
TO DEAL WITH SOME OTHER THINGS
THAT MIGHT BE MISSING FROM THOSE
POSITIONS CURRENTLY.
THIS IS ANOTHER GREAT TOPIC, IF
YOU'RE INTERESTED IN RAISING
WITH DR. BERTAGNOLLI, SHE THINKS
ABOUT THIS A LOT.
I DON'T MEAN TO DEFERRING THIS
TO HER, BUT THIS IS SOMETHING WE
TALK ABOUT A LOT IN THE
INSTITUTE DIRECTOR MEETINGS, AND
WE DON'T HAVE CLEAR ANSWERS.
ANOTHER FACTOR HERE IS
UNIONIZATION, RECENTLY VOTING TO
UNIONIZE, COLLECTIVE BARGAINING
AGREEMENT IS BEING DEVELOPED AND
THAT WILL HAVE A MAJOR IMPACT ON
THE LIVES OF THE FELLOWS AND
THOSE WHO SUPPORT THEM.
I THINK WE'RE IN FOR A LOT OF
CHANGE, A REQUIREMENT FOR
ONGOING REASSESSMENT OF OTHER
ADJUSTMENTS THAT NEED TO BE MADE
TO ACCOMMODATE THE APPROPRIATE
INCREASES IN SALARIES THAT ARE
LONG OVERDUE FOR THESE FOLKS.
WITH RESPECT TO THE COVID
DELAYS, I'VE SEEN A LOT OF
FLEXIBILITY RELATED TO COVID
DELAYS IN TERMS OF EXTENDING
TRAINING PERIOD SO I HOPE THAT
FOLKS THAT ARE IN THAT SITUATION
CAN RECEIVE ACCOMMODATIONS THAT
ARE APPROPRIATE.
I HOPE THAT WILL BE POSSIBLE.
I DON'T MEAN TO IGNORE THIS HALF
OF THE ROOM.
SO FAR THE QUESTIONS HAVE COME
FROM THIS SIDE.
I WAS TOLD NOT TO TURN MY LAPTOP
CAMERA ON WHILE IN PRESENTER
MODE, I'LL TURN ON MY CAMERA
LATER TO BE MORE INTERACTIVE
WITH THOSE OF YOU ONLINE, BUT
ANY COMMENTS?
GREAT, KARL?
>> YEAH, MORE OF A GENERAL
COMMENT, HIGHER LEVEL.
I ENJOYED READING THE STRATEGIC
PLAN.
WHAT I LIKED I THINK NIAMS HOW
DO WE CHALLENGE OURSELVES, AND I
LIKE THE BOLD VISION SECTION
BECAUSE OUR BOLD ASPIRATIONS,
TONE SETTING FOR THE REST OF THE
DOCUMENT.
THE OTHER THING I LIKED ABOUT
THIS, SENSE OF BELONGING, SENSE
OF INCLUSIVITY READING THIS,
MOST IF NOT ALL FORMS OF SCIENCE
IN THE MUSCULOSKELETAL
COMMUNITY, SKIN COMMUNITY, IS
REPRESENTED IN THIS DOCUMENT.
I THINK THAT WAY PEOPLE SEE
THEMSELVES AND SEE OPPORTUNITY
IN THIS STRATEGIC PLAN.
ONE THING I LIKED ABOUT THE
STRONG EMPHASIS ON HEALTH
EQUITY, IT IS TIMELY AND MUCH
NEEDED AS WE BEGIN THE A.I.
REVOLUTION.
A LOT OF FEAR OF BIAS AS A
RESULT OF THIS, THIS HELPS SET
THE TONE FOR THAT.
AND MAYBE AS A COUNCIL WE CAN
SPEAK TO THAT AT SOME POINT,
DOES IT GO FAR ENOUGH, CAN WE
KEEP AND EYE TO MAKE SURE WE'RE
CRITICALLY EVALUATING OUTCOMES
IN THAT DOMAIN?
I THINK IT HAS -- YOU KNOW, THE
PROVISIONS ARE IN PLACE IN THE
DOCUMENT TO MOVE IT FOR WORD BUT
IT'S SOMETHING WE WANT TO KEEP
AN EYE ON.
>> YEAH, THANK YOU SO MUCH.
I BELIEVE, I DON'T RECALL
EXACTLY THE NAME OR THE FRAMING,
BUT THERE ARE A COUPLE NEW
ADVISORY COMMITTEES TO THE
DIRECTOR THAT WILL ADDRESS SOME
OF THE ISSUES THAT YOU'RE
TALKING ABOUT.
DATA SCIENCE, A.I., MACHINE
LEARNING, AND ET CETERA.
SO THESE WILL CERTAINLY BE
ONGOING TOPICS OF DISCUSSION,
YOU KNOW, FOR US AT NIAMS AND
MORE BROADLY.
SO THANKS SO MUCH FOR TAKING THE
TIME TO READ IT AND FOR YOUR
COMMENTS.
YES, STEVE?
>> FIRST OF ALL, I'LL ECHO THE
POINTS, I THOUGHT THE STRATEGIC
PLAN WAS VERY DETAILED,
INTERESTING HOW YOU MAKE IT MORE
INFORMATIVE FOR THE GENERAL
PUBLIC WITH SO MANY WORDS IN THE
DOCUMENT.
I'M THRILLED WITH THE IDEA OF
EXPANDING THE PIPELINE FOR
FUTURE SCIENTISTS, DIVERSIFYING
THE WORKFORCE AS WELL.
WE AT THE FOUNDATION WORK ON
THIS AREA FOR RHEUMATOLOGY.
RHEUMATOLOGISTS ARE THE SHERLOCK
HOLMES OF MEDICINE, PUTTING
PUZZLE PIECES TOGETHER,
DIAGNOSE.
WE'RE GOING AFTER THE SAME TYPE
OF MINDSET FOR RHEUMATOLOGY AND
SCIENTISTS AND DON'T WANT TO
PURGE FROM OTHER AREAS BUT THAT
NEEDS TO HAPPEN TO STRENGTHEN
THE NIAMS PIPELINE.
ALSO IN REGARDS TO NIH, WHAT ARE
WE DOING FURTHER DOWN THE
PIPELINE IN MEDICAL COLLEGES AND
BEFORE.
I KNOW IT'S A GREAT PROGRAM YOU
JUST MENTIONED ABOUT YOUR SISTER
USING THE ONLINE STUFF FROM
NIAMS BUT ARE WE WORKING MORE
DOWN THE PIPELINE AS A FULL
INSTITUTE FROM NIH IN THAT
REGARD TO MAKE SURE WE'RE
STRENGTHING OPTIONS FOR HIGH
SCHOOLERS TO LOOK AT OR COLLEGE
STUDENTS TO LOOK AT SCIENCE AS A
CAREER, AND HOW WE'RE GOING TO
THAT ESPECIALLY IN
UNDERREPRESENTED GROUPS AS WELL.
>> YEAH, THANK YOU SO MUCH.
AND THERE IS, YOU KNOW,
INCREASING AWARENESS ACROSS THE
NIH AND MORE BROADLY THAT IF
WE'RE GOING TO BE SUCCESSFUL IN
BUILDING AND SUSTAINING DIVERSE
WORKFORCE WE REALLY HAVE TO BE
TARGETING MUCH YOUNGER AGES.
THAT'S WHAT MOTIVATED THE RECENT
ACTIVITIES, DEVELOPMENT THAT I
MENTIONED IN TERMS OF
COMMUNICATION MATERIAL.
BUT, ROBERT, DO YOU WANT TO
SPEAK TO SOME OUTREACH YOU'RE
DOING, YOUR VISION ABOUT THIS?
ROBERT AND I HAVE TALKED ABOUT
THIS.
>> THANK YOU.
GREAT POINT, STEVE.
GREAT RESPONSE, DR. CRISWELL.
WE ARE WORKING TO TARGET THE
K-12 PIPELINE BUT WE'RE ACTIVELY
TRYING TO ENSURE EQUITY IN OUR
EXTRAMURAL PROGRAM, ALSO
RECRUITMENT FOR INTRAMURAL
PROGRAM.
WE'RE GOING OUT TO MANY OF THE
MINORITY-SERVING INSTITUTIONS TO
HAVE A ONE-ON-ONE DIALOGUE ON
WHAT IT TAKES TO GET FUNDING,
BUT WE'RE UNDERSTANDING THAT THE
INFRASTRUCTURE IS NOT THERE.
SO, WE HAVE A LOT OF WORK TO DO.
HOPEFULLY WE CAN MAKE PROGRESS
THROUGH THE REPORT IN YEARS TO
COME.
WE'RE VERY EXCITED ABOUT IT TOO.
>> AND I'M SO IMPRESSED WITH HOW
MANY OF THOSE INSTITUTIONS
YOU'VE ALREADY CONNECTED WITH.
>> YEAH, WE'VE CONNECTED WITH
ALMOST 40 INSTITUTIONS SO FAR.
OUR GOAL TO HIT ALL 330.
GREAT TIMING.
HE'S DOING SOME TREMENDOUS WORK.
I'LL DO A WARM HANDOFF.
>> GREAT.
>> ESA BENSON, WE'RE
PARTICIPATING IN THE SEPA
PROGRAM, TARGETED AT K-12
INSTITUTIONS AS WELL AS
PARTICIPATING IN PROGRAMS LIKE
THE R15 PROGRAM, WORKS FOR
RESOURCE LIMITED INSTITUTIONS,
TRY TO PARTICIPATE.
SO WE ALWAYS HAVE THAT KIND OF
BALANCE BETWEEN HOW DO WE TARGET
FOR MISSION RELEVANT
INSTITUTIONS AND KIND OF MIGHTS
RELEVANT PROGRAMS SO WE'RE
ALWAYS TRYING TO BALANCE THOSE
TWO THINGS.
WE ARE TRYING TO EXTEND OUR
OUTREACH TO HAVE MORE
APPLICATIONS.
I THINK AS YOU MENTIONED, I
THINK ONE OF THE BIGGEST PAYOFFS
IS TARGETING YOUNGER
GENERATIONS, PARTIALLY BECAUSE
INTERVENTIONS AT THAT LEVEL
INCREASE OUR PIPELINE A LOT MORE
THAN EXTRA POSTDOC BECAUSE FOR
THE SAME AMOUNT OF MONEY WE CAN
GET SO MANY MORE PEOPLE
INTERESTED IN THAT.
BUT ALSO WE HAVE TO THINK ABOUT
KIND OF WE HAVE TO LIFT ALL
BOATS AT THE SAME TIME BECAUSE
IF WE DON'T, IT'S NOT JUST
DIVERSIFYING THE POPULATION BUT
ALSO IN TERMS OF PROGRAMMING.
SO WE HAVE A BOLUS OF POSTDOCS,
THEY SEE NO EARLY CAREER
PROGRAMS FOR THEMSELVES.
THAT DISCOURAGES THAT PIPELINE,
NOT A PIPELINE, MORE OF A
PATHWAY.
ASKS THOSE PEOPLE TO GO TO
DIFFERENT DIRECTIONS.
SO WE HAVE TO KIND OF BALANCE
ALL THESE THINGS AT THE SAME
TIME SO WHEN WE LIFT IT ACTUALLY
IS A WELL COORDINATED EFFORT.
>> JUST TO ADD TO -- SINCE WE'RE
TAG TEAMING THIS, DIVERSITY
SUPPLEMENTS, USING THESE TO
INCREASE ATTRACTION TO NIAMS FOR
FUTURE GENERATIONS AND A FUTURE
PLUG THERE'S GOING TO BE AN NIH
WEBINAR ON NEXT WEEK, 24th AND
25th, FOR ALL INTERESTED
PARTIES, FOR THOSE WANTING TO
UNDERSTAND THE GRANT PROCESS AND
WE'RE GOING TO BE DOING A
WELCOME TO OUR NIAMS DIVERSITY
SUPPLEMENT SCHOLARS AS WELL.
WE'RE ACTIVE IN TRYING TO REALLY
PUSH THIS ENVELOPE FOR EQUITY
AND OUTREACH.
ALSO, A STRONG PLAYER, LINDA
NELSON, WITH DARREN SLEDJESKI.
THERE'S A LOT OF HANDS WORKING
ON THIS PROJECT.
>> I SEE ED BOTCHWEY HAS A
COMMENT.
PLEASE, ED, WE'D LOVE TO HEAR
FROM YOU.
>> THANK YOU.
SO, I'D ALSO LIKE TO EXPRESS MY
APPRECIATION FOR JUST THE
THOUGHTFULNESS AND BREADTH OF
THE NEW STRATEGIC PLAN.
PARTICULARLY IN AREAS OF
REGENERATIVE MEDICINE AND THINGS
THAT ARE MORE ALIGNED WITH MY
RESEARCH INTERESTS, BUT I WANTED
TO DOVETAIL ON THIS TOPIC OF
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY.
YOU KNOW, I WANTED TO ASK MORE
SPECIFICALLY ABOUT PERSPECTIVES
ON ADDITIONAL MECHANISMS BEYOND
THE SUPPLEMENTS.
FOR EXAMPLE, NIH REWARD,
RESEARCH WITH ACTIVITIES RELATED
TO DIVERSITY PROGRAM, I THINK
THAT'S RELATIVELY NEW.
I BELIEVE NIAMS IS A PARTICIPANT
IN THAT PROGRAM.
WE'VE ALREADY SPOKEN ABOUT TEAM
SCIENCE, AND CERTAINLY, YOU
KNOW, I THINK IT'S WORTH
CONSIDERING, YOU KNOW, WHAT
ACTIVITIES THAT WE CAN SUPPORT
THAT CAN DRAW IN EXPERTISE FROM
MULTIPLE DISCIPLINES.
BUT I THINK THERE'S AN ASPECT OF
INCLUSIVITY IN JUST THE
WORKFORCE THAT IS ACTUALLY
CARRYING OUT THE RESEARCH AS
WELL.
AND CERTAINLY THERE ARE MEMBERS
OF OUR COMMUNITY WHO COMMITTED
TO THOSE TYPE OF ENDEAVORS, IN
ADDITION TO THE RESEARCH THAT'S
SPONSORED BY NIH.
I WAS VERY ENCOURAGED TO SEE
THESE NEW KINDS OF MECHANISMS
COMING INTO BEING BUT I HAVEN'T
HEARD MUCH ABOUT HOW WHAT
PERSPECTIVES HAVE EMERGED ABOUT
ANY THAT HAVE BEEN FUNDED OR
WHAT POLICIES OR KIND OF
APPROACHES THAT PARTICULAR
INSTITUTES LIKE NIAMS ARE TAKING
IN SUPPORT OF THESE TYPE OF NEW
MECHANISMS.
SO, I DON'T KNOW THAT THIS IS
SOMETHING TO TAKE UP IN THE
STRATEGIC PLAN BUT DO THINK THAT
THE COMMUNITY WOULD BENEFIT FROM
HEARING MORE ABOUT WHAT
INSTITUTES LIKE NIAMS ARE
LOOKING FOR IN SOME OF THESE
INNOVATIVE MECHANISMS TO
CONTINUE SUPPORTING IN THIS
IMPORTANT AREA.
>> MY COLLEAGUES HERE WILL HAVE
MORE TO SAY ABOUT THIS BUT WE
HAVE BEEN SO SEE AND CONTRIBUTE
TO FORWARD-LOOKING NEW PROGRAMS
THAT WILL ADDRESS IMPORTANT
SCIENTIFIC QUESTIONS AND ALSO
INCREASE DIVERSITY OF THE
WORKFORCE AND WE CONTRIBUTE TO
AS MANY OF THOSE AS WE POSSIBLY
CAN.
I DON'T KNOW, ESA, DID YOU WANT
TO SPEAK TO REWARD?
>> PUTTING ON MY OTHER HAT,
BROAD WORK FORCE, WE DO
PARTICIPATE IN REWARDS, R01s
AND STRONG OF -- AS WELL AS THE
STRONG PROGRAM.
WE PARTICIPATE IN RESEARCH
LIMITED INSTITUTION F10 AWARD,
RESEARCH LIMITED INSTITUTIONS,
WE PARTICIPATE IN NIGMS SURE
PROGRAM, WHICH IS TARGETED AT
THOSE INSTITUTIONS WHICH HAVE
SUPPORTED THE LARGEST BULK OF
DIVERSIFYING SCIENCE.
IN ADDITION WE'RE CURRENTLY
PARTICIPATING IN THE MOSAIC K99,
IF YOU HAVE SCHOLARS THAT WISH
TO APPLY SEND THEM MY WAY, A
PROGRAM WHICH HAS THE IDEA OF
BROADENING THE WORKFORCE, A
CENTRAL TENET.
AND I THINK IT'S A FANTASTIC
PROGRAM JUST IN HOW IT'S
STRUCTURED BY BUILDING LARGER
COHORTS WHICH WE'VE SEEN IN
THINGS LIKE THE FIRST PROGRAM AT
A LOT OF INSTITUTIONS, THAT IDEA
OF THE COHORT, HAVING THAT
PARTNERSHIP WITH EVERYONE THAT
ACTUALLY ALLOWS FOR PEOPLE TO
RETAIN IN SCIENCE.
YEAH, AND OUR DIVERSITY SCHOLARS
PROGRAM AND THINGS LIKE THAT.
WE TRY TO TAKE A BROAD APPROACH,
WE ALSO PARTICIPATE IN THE AT
RISK R01, SO THAT'S FOR EARLY
CAREER INVESTIGATORS AS WELL AS
ANYONE THAT'S HELPING DIVERSIFY
THE WORKFORCE.
YEAH, I THINK THAT'S ABOUT IT.
I COULD THINK OF OTHERS GIVEN A
COUPLE MORE MINUTES.
>> WHILE YOU THINK ABOUT THAT
I'LL JUST SAY MORE GENERALLY
PARTICULARLY GIVEN, YOU KNOW,
THE CHALLENGING BUDGET TIMES,
EVERY FUNDING MECHANISM THAT WE
SUPPORT, WE HAVE TO REGULARLY
REASSESS THE IMPACT.
WHAT OTHER NEEDS ARE WE NOT ABLE
TO SUPPORT FUNDING MECHANISMS
THAT ARE COMING UP FOR RENEWAL,
IS THIS BEST INVESTMENT FOR THE
DOLLARS THAT WE HAVE?
SO WE'RE ALWAYS THINKING ABOUT
NEW FUNDING MECHANISMS TO ENSURE
GREATEST IMPACT AND ADDRESS NO
NEEDS, WHETHER WORKFORCE, NEW
SCIENTIFIC AREAS, ET CETERA.
>> MIGHT I FOLLOW UP?
>> ED AND ROBERT.
ED, YEAH.
>> SPEAKING SPECIFICALLY ABOUT
REWARD, ONE QUESTION THAT I KNOW
THAT HAS COME UP AS AN EXAMPLE,
NIH AND/OR NIAMS LOOKING TO
ESSENTIALLY USE SOMETHING LIKE
THAT AS A MECHANISM TO PROVIDE
RESOURCES FOR PEOPLE WITH
ESTABLISHED TRACK RECORDS FOR
DOING THIS TYPE OF OUTREACH IN
WORKFORCE DEVELOPMENT, YOU KNOW,
IMPACTING IN THIS DEIA AREA.
OR IS IT BEING USED AS INCENTIVE
FOR LEADERS AND WELL-RESOURCED
RESEARCHERS IN OUR COMMUNITY TO
CONSIDER INVESTING SOME OF THEIR
TIME IN THESE OTHER ENDEAVORS
AND BEING MORE INCLUSIVE HOW
THEY ARE INCORPORATING, YOU
KNOW, PEOPLE INTO THE RESEARCH,
OR IS IT BOTH?
I THINK -- I'VE HAD
CONVERSATIONS WHERE IT'S -- IT
CAN BE UNCLEAR WHAT EXACTLY
WOULD MAKE A PERSON COMPETITIVE
FOR THESE TYPE OF MECHANISMS AND
WHAT THE INSTITUTES ARE REALLY
LOOKING FOR.
>> IN REWARDS TO REWARD R01
THERE'S A DIVERSITY OF THOUGHT
THERE.
THE INTENTION OF THE PROGRAM IS
THAT REWARD PORTION, WHERE IT'S
SAYING PEOPLE WITH ESTABLISHED
RECORDS OF PROMOTING WORKFORCE
DIVERSITY REALLY THAT'S WHAT THE
INTENT OF THE PROGRAM IS.
HOWEVER, REVIEWERS DO SEE PEOPLE
WITH PERHAPS STRONG PLANS FOR
DIVERSIFYING WORKFORCE GOING
FORWARD MAY ALSO COMPETE.
SO IT REALLY IS -- SOMETIMES YOU
COULD PUT A ROCK STAR PLAN, THIS
IS HOW I'M GOING TO INTEGRATE,
BUT REVIEWERS ARE SAYING, ALL
RIGHT, IF YOU PLAN THIS THING DO
YOU DEMONSTRATE AN EXPERTISE IN
THIS?
AND I THINK JUST LIKE YOUR
SCIENCE, YOU HAVE TO
DEMONSTRATE, YOU HAVE EXPERTISE.
IF YOU DON'T IT DOES SHOW UP IN
THE APPLICATION, AND THOSE
APPLICATIONS TEND TO FALTER.
>> SO TO ADD TO THE
CONVERSATION, THE NIH CHIEF
OFFICE OF SCIENTIFIC DIVERSITY
WORKFORCE HAS A DEIA COMPETITION
PRIZE.
MENTORING AND FOSTERING
ENVIRONMENT FOR INCREASING
DIVERSITY WORK FORCE,
INCLUSIVITY.
I DO WANT TO TAKE A STEP BACK TO
UNDERSTAND WHAT WAS JUST
MENTIONED, THE GREAT
INITIATIVES, THESE GREAT FUNDING
OPPORTUNITIES, WHAT WE DO WHEN
WE GO FOR OUTREACH, WE PROVIDE
AN INFORMAL GUIDE THAT WE
PACKAGED THESE FUNDING
INITIATIVES, SPECIFIC FOR
SMALLER RESEARCH LIMITED
INSTITUTIONS, RIGHT?
SO EVERYTHING THAT DR. ESA IS
MENTIONING, OFFICE OF SPONSORED
RESEARCH MAY BE AWARE BUT WHEN
WE GO TO MINORITY-SERVING
INSTITUTIONS INFRASTRUCTURE IS
NOT THERE.
WE'RE HELPING AT THE BASE LEVEL
TO INTRODUCE OPPORTUNITIES, GOAL
TO SEE INCREASE IN AMOUNT OF
APPLICATIONS COMING TO NIAMS FOR
FUNDING, WE WOULD SEE THAT AS A
SUCCESS, RIGHT?
BUT AGAIN THERE'S A TREMENDOUS
AMOUNT OF WORK THAT HAS TO BE
DONE IN THIS SPACE, AND
LEADERSHIP IS PROVIDING TIME.
NIAMS DOES HAVE A COMMITMENT TO
DEIA, SO WE'RE EXCITED ABOUT
WHAT'S TO COME.
>> VALENTINA, YOU'VE BEEN TRYING
TO WEIGH IN.
PLEASE GO AHEAD.
>> YEAH, THANK YOU SO MUCH.
SO THE STRATEGIC PLANNING HAS
BEEN AN INSPIRING OUTCOME.
I SECOND WHAT MY COLLEAGUES
SAID, IMPORTANT FOR INVESTMENT
OF OUR DOLLARS, HAVING DIVERSE
WORKFORCE RESULTS IN BEING ABLE
TO SOLVE PROBLEMS WITH THE DEPTH
WE DON'T HAVE YET, APPLICATION
THAT IS REQUIRED.
TO ME IT'S SO IMPORTANT.
ALL THESE EFFORTS, TO NOURISH
AND EMPOWER A GROUP OF PEOPLE
ACROSS ALL LEVELS OF CAREER,
WHAT WE CALL PIPELINE,
FUNDAMENTALLY IMPORTANT, BUT TE
LAND
LANDSCAPE, MY COLLEAGUES DON'T
LOOK LIKE MY, IT'S DRAMATIC.
MY QUESTION AS WE GIVE REWARD
R01s AND THINGS LIKE THAT,
FUNDAMENTALLY IMPORTANT TO
STABILIZE INROADS, WHAT CAN WE
DO TO TRACK AND SUPPORT THOSE
BRILLIANT BRAINS WHICH RIGHT NOW
REPRESENT THE BIGGEST ANCHOR AS
WE NOURISH THE PIPELINE GOING
FORWARD, TO SEE MENTORS, SEE
THESE MINDS BEING CAPABLE OF
TOPPING THEIR CREATIVITY, MY
FEAR WHAT WE'VE DONE
HISTORICALLY IS SUPPORT PEOPLE
THAT LOOK LIKE THE GROUP THAT IS
DOMINANT, HAS RESOURCE, GIVING
MORE MONEY AS A RESULT OF THEM
HAVING A BIGGER HEART, MORE
INTEREST IN MENTORING BUT NOT
SOLVING THE PROBLEM WE'RE
CONFRONTED WITH.
>> SEVERAL GREAT THOUGHTS THERE,
INCLUDING ENSURING THAT
LONGITUDINALLY AND ESA HAS
SPOKEN TO THIS, ROBERT AS WELL,
THAT WE'RE MAKING SURE WE'RE
BEING SUCCESSFUL AND BEING
EFFECTEDDIVE AND MAKING A
DIFFERENCE.
I LIKE TO TALK ABOUT HOW
IMPORTANT A DATA DRIVEN APPROACH
IS, THAT'S ONE PIECE, MAKING
SURE WE'RE NOT DOING THINGS WE
THINK WILL HELP BUT CONVINCING
OURSELVES THAT WE'RE DOING THE
RIGHT THING.
STUART GOODMAN'S HAND IS RAISED
BUT DARREN WANTED TO MAKE AN
ANNOUNCEMENT.
>> YEAH, ONE OF OUR FUTURE NEW
COUNCILORS IS HERE WITH US, WE
DIDN'T LET HER INTRODUCE
HERSELF, DR. SPENCER.
I WON'T GO THROUGH THE GORY
DETAILS WHY WE DIDN'T GET HER
ONBOARDED ON TIME BUT IF YOU
WANT TO INTRODUCE YOURSELF.
>> SURE.
MELISSA SPENCER, PROFESSOR OF
NEUROLOGY, I WORK ON HEALTH
PHYSIOLOGY AND GENE THERAPIES
FOR MUSCULAR DYSTROPHY.
IT'S VERY NICE TO BE HERE.
>> THANK YOU.
WE LOOK FORWARD TO SEEING YOU AS
A FULL COUNCILOR IN JANUARY.
>> STUART AND THEN DOUG'S HAND
IS UP AND ALSO WANTED TO
ENCOURAGE -- AH, OKAY, WE HAVE A
FEW HANDS, ENCOURAGE EARLY
CAREER INVESTIGATORS WITH US,
YOU HAVE A UNIQUE PERSPECTIVE
THAT THE REST OF US DON'T SO
PLEASE FEEL FREE TO SHARE YOUR
THOUGHTS AS WELL BUT I THINK
WE'LL START WITH STUART NEXT.
>> THANK YOU.
FIRST, I WOULD LIKE TO THANK
YOU, LINDSEY, AND ALL OF OUR
STAFF AND THE OTHER COUNCIL
MEMBERS FOR THE OPPORTUNITY OF
BEING ON COUNCIL FOR THE LAST
NUMBER OF YEARS.
IT'S BEEN VERY ENLIGHTENING FOR
ME.
I'VE MADE SOME VERY GOOD FRIENDS
AT NIH AND ON COUNCIL, I
APPRECIATE THE SUPPORT YOU AND
OTHERS HAVE GIVEN TO ME
PERSONALLY AND TO OTHERS, TO
MAKE US FEEL VERY COMFORTABLE TO
EXPRESS OUR VIEWS AND TO HELP
SHAPE THE FUTURE OF NIAMS.
IT'S BEEN VERY REWARDING FOR ME.
I WOULD ALSO LIKE TO ASK WHAT
YOUR IMPRESSION IS, AND WHAT THE
POTENTIAL EFFECTS ON NIAMS MIGHT
BE, OF THE PROPOSED MERGER OF A
COUPLE OF THE DIFFERENT
INSTITUTES, NIBIB, NCATS, ET
CETERA.
THIS MAY HAVE SOME PROFOUND
EFFECTS ON NIAMS.
AND SOME OF THE OTHER
INSTITUTES, INCLUDING WHAT I
UNDERSTAND WOULD BE A BUDGET
CUT, TO THOSE INSTITUTES THAT
ARE COMBINED.
AND THIS MAY INCREASE THE LOAD
TO NIAMS.
SO I'M WONDERING IF THE NIAMS
STAFF HAVE THOUGHT ABOUT WHAT
THE REPERCUSSIONS MIGHT BE IF
THIS IS CARRIED OUT.
>> YEAH, STUART, THANK YOU FOR
THAT QUESTION.
I ANTICIPATED THAT MIGHT BE ON
SOME OF YOUR MINDS.
WE MENTIONED IT BECAUSE THE WAY
THE HOUSE HAS ORGANIZED ITS
BUDGET BY COMBINING VARIOUS
INSTITUTES AND CENTERS WE DON'T
HAVE A LINE ITEM FOR NIAMS THAT
WE CAN BE CONSIDERING AND SHARE
WITH YOU.
BUT A COUPLE THINGS ABOUT THAT.
THIS IS AN EVEN BETTER QUESTION
FOR DR. BERTAGNOLLI, IF YOU'D
LIKE TO RAISE WITH HER AS WELL.
FIRST, THIS PROPOSAL FOR A MAJOR
REORGANIZATION OF THE NIH IS NOT
SOMETHING THAT THE APPROPRIATION
COMMITTEE HAS AUTHORITY TO DO.
IT REPRESENTED A STATEMENT AND
OPINION, BUT THEY ARE NOT THE
AUTHORIZING BODY TO PROPOSE
SOMETHING LIKE THAT.
ON THAT NOTE, THERE IS A --
THERE ARE PLANS TO IN SOME
RESPECTS RESURRECT AN ADVISORY
BOARD SO TO SPEAK THAT WOULD
CONSIDER THESE SORTS OF
PROPOSALS, MAJOR CHANGES TO THE
NIH, THAT WOULD BE A LARGE GROUP
OF INTRAMURAL AND EXTRAMURAL
SCIENTISTS AND A VERY
DELIBERATIVE FORMAL THOUGHTFUL
PROCESS WITH A LOT OF INPUT.
AND COMMUNICATION.
SO, THAT'S NOT GOING ANYWHERE IN
CURRENT FORM BUT REPRESENTS A
POINT OF VIEW.
BUT SIDE NOTE, MY UNDERSTANDING,
I HAVE SOME EXPERTS HERE FROM MY
COLLEAGUES IN THE NIAMS SPPAB,
OUR LEGISLATIVE FOLKS, FOR WHAT
IT'S WORTH, THE PROPOSED BUDGET
FOR THREE INSTITUTES COMBINED
REPRESENTED $100 MILLION
INCREASE COMPARED TO NEXT YEAR.
SO ON THE SURFACE, ONCE AGAIN
WE'RE NOT EXPECTING THIS TO GO
ANYWHERE, YOU KNOW, CURRENTLY,
IT WOULDN'T NECESSARILY FROM A
FINANCIAL STANDPOINT, YOU KNOW,
SUGGEST THAT WE HAD A REDUCED
BUDGET TO OPERATE BUT DR.
BERTAGNOLLI HAS -- ADVICE THESE
GIVEN US IS KEEP OUR HEADS DOWN
AND CONTINUE TO DO OUR GREAT
WORK.
AND FOR THOSE WE SUPPORT IF THEY
HAVE STRONG FEELINGS ABOUT THIS
THEY CAN REACH OUT TO THEIR
REPRESENTATIVES AND, YOU KNOW,
AND EXPRESS THEIR CONCERNS.
BUT WE'RE REALLY FOCUSING ON
DOING A GREAT JOB, CONTINUING TO
SERVE THE BROADER SCIENTIFIC AND
BROUGHTER -- BROADER PUBLIC.
DR. BERTAGNOLLI, YOU'RE
SURPRISED -- SOMEONE ASKED ABOUT
THE PROPOSED RESTRUCTURE, I SAID
THAT WOULD BE AN INTERESTING
QUESTION TO PROPOSE TO HER.
SURE, JUMP IN AND I'LL DO A
BETTER INTRODUCTION.
HERE IS THE RELATIVELY NEW
WONDERFUL FANTASTIC NIH
DIRECTOR.
>> THANK YOU.
RESTRUCTURING.
SO, WE -- LET'S SEE.
I ASSUME THIS IS IN RESPONSE TO
SOME SIGNALS WE GOT FROM THE
APPROPRIATIONS COMMITTEES AT
CONGRESS THIS YEAR ABOUT --
THERE WAS REALLY -- THERE WAS
MANY RECOMMENDATIONS THAT CAME
BACK TO US.
SOME OF THEM ARE COMPLETELY
STRAIGHTFORWARD AND WE'LL
IMPLEMENT RIGHT AWAY.
ONE, FOR EXAMPLE, WAS TO STAND
UP THE SMRB, OUR MANAGEMENT
REVIEW BOARD, TO THINK ABOUT HOW
ON AN ADMINISTRATIVE AND
OPERATIONAL ASPECTS OF NIH HOW
WE CAN REALLY INNOVATE,
COORDINATE, DO THAT BETTER.
THEN THERE WERE OTHERS THAT I
THINK CAUGHT EVERYBODY'S
ATTENTION BY SAYING THAT OUR 27
INSTITUTES AND CENTERS MIGHT BE
BETTER SERVED DOING
CONSOLIDATION DOWN TO 15.
THAT LEVEL OF RESTRUCTURING
SURPRISED EVERYONE BUT GOT
EVERYONE THINKING, YOU KNOW, GOT
EVERYBODY THINKING ABOUT --
INCREDIBLY RELEVANT QUESTION,
HOW DO THOSE 27 INSTITUTES AND
CENTERS ALL WORK TOGETHER
EFFECTIVELY AND COLLABORATE WHEN
NECESSARY BECAUSE, OF COURSE,
EACH INSTITUTE AND CENTER BEING
A SILO WOULD BE HARMFUL TO OUR
OVERALL ENTERPRISE.
HERE IS MY ANSWER TO THIS.
NUMBER ONE, WE TAKE ALL OF THESE
RECOMMENDATIONS VERY SERIOUSLY,
OPEN TO ANY SUGGESTIONS THAT CAN
MAKE NIH BETTER AND MANY OF
THOSE SUGGESTIONS WILL BE ACTED
ON VERY QUICKLY, FRANKLY.
WHEN IT COMES TO A MAJOR
INSTITUTE RESHUFFLING, I THINK
WE'RE BALANCING A COUPLE THINGS.
FIRST OF ALL, WE'RE BALANCING
HAVING A VISIBLE SPACE, A
VISIBLE INSTITUTE THAT CAN
REALLY RALLY AROUND CERTAIN
PATIENT GROUPS, CERTAIN
CONSTITUENCIES, WHO REALLY CARE
ABOUT THE FACT WE HAVE NIAMS,
FOR INSTANCE.
DISRUPTING THAT FRANKLY I THINK
WOULD BE HARMFUL IN MANY WAYS.
THAT BEING SAID, WE CANNOT
TOLERATE SILOS AND REALLY HAVE
TO DO LOTS OF INTERDISCIPLINARY
RESEARCH, LOTS OF
TRANS-INSTITUTE AND CENTER
RESEARCH.
WE HAVE A NUMBER OF DIFFERENT
WAYS THAT WE DO THAT.
I THINK THE COMMON FUND IS A
GREAT EXAMPLE.
IT'S BEEN AROUND FOR ALMOST TWO
DECADES NOW.
THE ACTIVITIES, BOTH IN
FUNDAMENTAL SCIENCE, A LOT OF
FUNDAMENTAL SCIENCE HAS TO SPAN
EVERYBODY IN SUPPORTING
FUNDAMENTAL SCIENCE AND IN
SUPPORTING CROSS-I.C.
INITIATIVES WITH REALLY FUNDING
TO COME OUT OF THE DIRECTOR'S
OFFICE, THAT REALLY SPURS
COLLABORATION ACROSS MANY
INSTITUTES AND CENTERS.
THE OTHER THING I WILL SAY IS
ONE OF THE REASONS THAT MY JOB
IS SO TERRIFIC IS THERE IS
ALREADY SUCH A CULTURE OF
COLLABORATION ACROSS NIH
ALREADY, THAT I HAVE JUST --
WE'VE LAUNCHED EVEN SINCE I GOT
HERE A NUMBER OF BIG CROSS-I.C.
COLLABORATIONS, AND THEY HAVE
BEEN MET WITH ENTHUSIASM,
PARTICIPATION, INPUT.
WHAT WE'VE GOT THAT WAY IS
WORKING BUT WHY IS IT WORKING?
IT'S WORKING BECAUSE OF WHO
WE'VE GOT LEADING THE INSTITUTES
AND CENTERS.
WE'VE GOT PEOPLE WHO DO NOT
THINK WITH A SILO MENTALITY.
WHO UNDERSTAND THE IMPERATIVE OF
WORKING ACROSS BOUNDARIES, AND
SO I THINK BECAUSE OF THE
COMBINATION OF THE PEOPLE WE
HAVE, THE UNIFYING FUNDS THAT WE
HAVE WHERE WE CAN BRING
EVERYBODY TOGETHER WITH REAL
MONEY AND IMPORTANCE OF
RECOGNIZING INDIVIDUAL I.C.s
FOR CONSTITUENTS THEY SERVE I
LIKE OUR CURRENT SYSTEM.
HOW IS THAT?
DOES THAT COVER IT ALL?
>> PERFECT TIMING.
CHECK THAT OFF OUR LIST.
WE WANT TO KEEP ON SCHEDULE.
MARK, IF YOU CAN SHARE THE NEXT
SLIDE.
BEFORE I INTRODUCE DR.
BERTAGNOLLI, THEY HAVE YOUR
SLIDES HOPEFULLY, YOU CAN GO TO
THE -- OH, DO WE NOT HAVE DR.
BERTAGNOLLI'S SLIDES?
OKAY.
JUST SHOW THE SLIDE.
I WANTED TO SPEAK TO SOME OF THE
ACTIVITIES THAT NIAMS IS
INVOLVED IN THAT REALLY ALIGN
WITH DR. BERTAGNOLLI'S STATED
PRIORITIES.
SO, FIRST OF ALL, COUNCIL IS
VERY INTERESTED IN ENGAGING
MEMBERS OF THE PUBLIC, ENTIRE
COMMUNITY IN BIOMEDICAL
RESEARCH.
AND THESE HAVE BEEN THE THEMES
OF THE COUNCIL MEETING AND OUR
PREVIOUS ONE.
WE ALSO HAVE AN ENTIRE STRATEGY
IN OUR STRATEGIC PLAN DEVOTED TO
IMPROVING DIVERSITY OF RESEARCH
PARTICIPANTS.
THIS IS A KEY FOCUS OF DR.
BERTAGNOLLI'S CARE FOR HEALTH
INITIATIVE TO ADDRESS BARRIERS
TO PARTICIPATION IN CLINICAL
RESEARCH.
NIAMS SUPPORTS THIS EFFORT AND
I'M SURE WE'LL TALK MORE ABOUT
THAT IN FUTURE MEETINGS.
WE ALSO HAVE A PRIORITY
DEDICATED TO USING DATA SCIENCE,
ARTIFICIAL INTELLIGENCE, MACHINE
LEARNING AND COMPUTATIONAL
BIOLOGY TO ADVANCE KNOWLEDGE AND
TREATMENT.
AND WE HOPE THE RESEARCH
COMMUNITY WILL AVAIL THEMSELVES
OF RESOURCES IN OUR ARTHRITIS
AND AUTOIMMUNE AND RELATED
DISEASES PORTAL, AND OTHER LARGE
DATABASES AS THEY PURSUE
RESEARCH IN THIS AREA.
NIAMS ALSO PRIDES ITSELF BEING A
LEADER IN THE FIELD OF
REGENERATIVE MEDICINE WITH MANY
FOCUSED ON WAYS TO GROW NEW
SKIN, MUSCULOSKELETAL TISSUE
SUCH AS BONE, CARTILAGE.
NIAMS ASSUMED LEADERSHIP OF THE
INNOVATION PROJECT, AUTHORIZED
IN 2016, BY THE 21ST CENTURY
CURES ACT TO FOCUS NIH EFFORTS
ON CLINICAL RESEARCH USING ADULT
STEM CELLS.
AS THIS ARM NEARS COMPLETION
WE'RE WORKING AS DR. BERTAGNOLLI
WAS JUST SUGGESTING WITH OTHER
NIH COMPONENTS AND THE
FOUNDATION FOR NIH TO ENVISION
THE FUTURE FOR REGENERATIVE
MEDICINE AND CELL-BASED RESEARCH
THROUGH EFFORT SUCH AS
ACCELERATING MEDICINES
PARTNERSHIP, BESPOKE GENE
THERAPY CONSORTIUM, AMP
CELL-BASED THERAPY CONSORTIUM.
AS YOU LISTEN TO DR. BERTAGNOLLI
HIGHLIGHT THESE AND OTHER
PRIORITIES, THINK ABOUT HOW THIS
CAN INTEGRATE INTO BROADER NIH
EFFORTS.
DR. BERTAGNOLLI, WE WERE JUST
WRAPPING UP DISCUSSION ON THE
NEW STRATEGIC PLAN WHICH
HIGHLIGHTS ALL OF THESE THINGS
WHICH ARE SO STRONGLY ALIGNED
WITH YOUR PRIORITIES.
>> WE DO HAVE A GLITCH.
I DON'T THINK WE'VE RECEIVED
YOUR SLIDES YET.
NO, I JUST E-MAILED ABOUT THAT
TO YOUR GROUP.
>> LET ME INTRODUCE YOU FIRST
AND KILL ANOTHER MINUTE WHILE I
INTRODUCE YOU.
YOUR VERY IMPRESSIVE BACKGROUND.
WE'LL TAKE A COUPLE SECONDS
HERE.
SO DR. BERTAGNOLLI IS THE 17th
DIRECTOR OF THE NIH, THE FIRST
SURGEON, YAY, WE HAVE A NUMBER
OF SURGEONS AROUND THE TABLE AND
ON THE ZOOM CALL, SECOND WOMAN
TO HOLD THE POSITION.
MANY OF YOU PROBABLY KNOW SHE
PREVIOUSLY SERVED AS DIRECTSOR
OF THE NATIONAL CANCER
INSTITUTE, BEFORE THAT WAS
SURGICAL ONCOLOGIST AT HARVARD
MEDICAL SCHOOL.
THROUGHOUT HER CAREER SHE'S BEEN
AT THE FOREFRONT OF THE FIELD OF
CLINICAL ONCOLOGY.
LABORATORY FOCUSED ON
UNDERSTANDING GENETIC DRIVERS OF
GASTROINTESTINAL CANCER AND ROLE
OF INFLAMMATION AS PROMOTER OF
CANCER GROWTH.
SHE HAS BEEN A MAJOR LEADER OF
CLINICAL TRIALS AND TRIAL
NETWORKS, GO TEAM SCIENCE, AND
CHAMPIONED COLLABORATIVE
INITIATIVES TO TRANSFORM DATA
INFRASTRUCTURE FOR CLINICAL
RESEARCH.
DR. BERTAGNOLLI IS THE DAUGHTER
OF ITALIAN AND FRENCH BASK
IMMIGRANTS, GREW UP ON A RANCH
IN WYOMING, B.S. IN ENGINEERING
FROM PRINCETON, MEDICAL SCHOOL
AT UNIVERSITY OF UTAH, TRAINED
IN SURGERY AT BRIGHAM AND
WOMEN'S HOSPITAL, RESEARCH
FELLOW IN TUMOR ONCOLOGY
DANA-FARBER CANCER INSTITUTE,
AND I'M SO GREATLY HONORED TO
WORK CLOSELY WITH HER ON MANY
NIH WIDE EFFORTS AND LOOK
FORWARD TO HER PRESENTATION.
HOPEFULLY THAT WILL COME WITH
SLIDES.
>> IF IT DOESN'T, WE CAN GO
WITHOUT SLIDES.
WE'LL LET YOU WORK ON THE
SLIDES.
THANK YOU.
IT'S JUST THRILLING TO BE HERE.
IN MEDICAL SCHOOL I WANTED TO BE
AN IMMUNOLOGIST.
CLINICAL IMMUNOLOGIST.
I JUST LOVE -- SO FASCINATED BY
IMMUNOLOGY.
I HAD THE GOOD FORTUNE TO GO TO
A -- I FELL IN LOVE WITH SURGERY
WHEN I WENT INTO AN OPERATING
ROOM FOR THE FIRST TIME.
THOSE OF YOU WHO ARE SURGEONS
WILL KNOW SURGEONS ARE BORN, NOT
MADE.
YOU KIND OF -- THE MINUTE YOU
WALK IN THE O.R. YOU DECIDE THIS
IS THE PLACE FOR ME.
I DID ONE OF THOSE.
I DIDN'T GIVE UP MY LOVE OF
IMMUNOLOGY.
I HAD THE GREAT PLEASURE OF
BEING IN A SURGERY TRAINING
PROGRAM WHERE THE CHAIR OF
SURGERY WAS A RENOWNED TRAUMA --
A TRAUMA IMMUNOLOGIST, THE
EFFECT OF ALL KINDS OF TRAUMATIC
INSULTS ON THE IMMUNE SYSTEM.
WE ALSO WERE BELIEVE IT OR NOT
AT THE HOSPITAL WHERE STEVE
ROSENBERG DID HIS TRAINING IN
SURGERY.
SO WE HAD A LONG TRADITION OF
SURGEONS STUDYING IMMUNOLOGY.
I DID A THREE-YEAR FELLOWSHIP AT
DANA-FARBER IN TUMOR IMMUNOLOGY
SO I'VE LONG HAD AN INTEREST IN
THIS FIELD.
I WILL SAY THAT MY LAB HAS BEEN
CLOSED FOR A WHILE NOW, MOVED ON
TO OTHER THINGS, BUT I STILL GO
TO LAB MEETINGS IN IMMUNOLOGY.
AND I STILL DO MY BEST TO TRY TO
KEEP MY MIND ENGAGED WITH WHAT'S
GOING ON, CUTTING EDGE IN THE
FIELD, AND OH MY GOD, WHAT A
THRILLING, THRILLING TIME IT IS
FOR THAT FIELD.
THAT'S JUST A LITTLE BIT OF
BACKGROUND FOR ME.
WE CAN KEEP GOING.
ONE OTHER THING THAT'S KIND OF
CORE TO MY GOALS AND IDENTITY,
YEAH, I DID GROW UP IN WYOMING,
100 MILES FROM THE DOCTOR'S
OFFICE, FROM THE NEAREST
HOSPITAL.
IT'S NOW 2024, AND IT'S STILL
100 MILES TO THE DOCTOR'S
OFFICE, WHERE I GREW UP.
THERE REALLY ARE PLACES IN THIS
NATION WHERE PEOPLE ARE LEFT OUT
OF NOT ONLY CARE, CERTAINLY
SPECIALTY CARE, I CAN SEE THAT,
BUT WE CAN'T LEAVE THEM OUT OF
RESEARCH, OKAY?
SO SOMEHOW WE HAVE TO BRING OUR
RESEARCH ARM TO THOSE
COMMUNITIES AND I FEEL VERY,
VERY STRONGLY ABOUT THAT.
NEXT I'LL JUST GO AND SAY THAT
ONE OF THE OTHER MAJOR ISSUES WE
HAVE IS THAT WE'RE GOING IN THE
WRONG DIRECTION IN SOME SEGMENT
OF THE POPULATION.
YOU CAN GO TO NATIONAL
INSTITUTES OF MINORITY HEALTH
AND DISPARITIES, GO TO THEIR
WEBSITE.
THEY HAVE THIS REALLY GREAT TOOL
WHERE YOU CAN PLOT ALL OF THE
DISPARITIES WE HAVE IN HEALTH
CARE, IN THE UNITED STATES, PLUS
THE MAP, WHERE THE DISPARITIES
ARE.
MORE CANCER, HIGHER MORTALITY,
MORE SUBSTANCE ABUSE, LOWER
EDUCATIONAL ATTAINMENT, ALL OF
THOSE NEGATIVE SOCIAL
DETERMINANTS OF HEALTH, AND ALL
OF THE NEGATIVE OUTCOMES IN
HEALTH, AND THE DARN MAP
LOOKS -- IT'S SUPERIMPOSABLE
BASICALLY.
YOU KNOW, AND GUESS WHAT, THOSE
ARE ALSO PREDOMINANTLY RURAL
LOCATIONS, AND FINALLY IF YOU
LOOK AT PARTICIPATION IN
RESEARCH, IT'S THE SAME MAP.
SO THAT'S TELLING ME IF WE'VE
GOT ALL THESE DISPARITIES, ALL
THESE HEALTH PROBLEMS, THINGS
GOING THE WRONG DIRECTION, IF
THAT OVERLAPS WITH RESEARCH,
THAT MEANS WE AS THE NIH ARE NOT
IN THOSE COMMUNITIES THE WAY WE
NEED TO BE TO MOVE THE NEEDLE ON
HEALTH.
I REALLY DO BELIEVE THAT
RESEARCH DRIVES BETTER HEALTH,
NOT ONLY DOWNSTREAM OF COMING UP
WITH NEW TREATMENT AND KICKING
IT OUT TO THE HEALTHCARE SYSTEM
BUT UPSTREAM BECAUSE I THINK
WE'VE SEEN OVER AND OVER AGAIN
WHEN PEOPLE ARE PARTICIPATING IN
RESEARCH, THEY ARE GETTING
BETTER CARE.
THEY ARE MORE CONNECTED, EVEN IF
THEY ARE IN A REMOTE LOCATION,
THEY ARE MORE CONNECTED TO WHAT
IT TAKES TO BE A HEALTHY PERSON.
SO, UPSTREAM AND DOWNSTREAM
RESEARCH HAS TREMENDOUS BENEFITS
ON HEALTH.
SO, THE OTHER THING I WILL SAY,
EVERY CLINICIAN WILL ADMIT THIS.
AND SURGEONS PROBABLY MORE THAN
MOST.
WHEN YOU'RE SITTING IN CLINIC
ACROSS FROM A PATIENT, AND
YOU'RE MAKING A DECISION FOR
CARE OF THIS PATIENT, HOW OFTEN
ARE THOSE DECISIONS BASED ON THE
HIGHEST LEVEL OF SCIENTIFIC
EVIDENCE?
SHOCKINGLY, NOT -- I'LL SAY FOR
SURGERY, YOU KNOW, WE GET IT,
BUT EVEN, YOU KNOW, ANY OF THE
FIELDS.
WE'VE LOOKED AT ANALYSIS,
ANALYSIS HAS BEEN DONE FOR
GUIDELINE CARE, YOU KNOW, LEVEL
OFFED EVIDENCE IN GUIDELINES,
ONCOLOGY, CARDIOLOGY, ROUGHLY 7%
OF THE TIME WE'RE OPERATING WITH
LEVEL 1 EVIDENCE, AND ABOUT MORE
THAN THREE-QUARTERS OF TIME
WE'RE WITH LEVEL 2A, 2B
EVIDENCE, NOT BAD, BUT WE CAN O
SO MUCH BETTER.
MAYBE BOUNCE THROUGH ALL OF
THESE SLIDES, KEEP GOING.
KEEP GOING.
WE TALKED ABOUT THIS.
WE SPEND MORE, WE'RE MISSING
PEOPLE.
OKAY, GO BACK.
SO, BACK ONE MORE.
OKAY.
SO, ONE OF OUR PRINCIPLES HERE
AT NIH IS OUR WORK ENCOMPASSES
THE LAB, THE CLINIC, IT DO NOT
DOES OF OF -- IT DOES NOT STOP
AT THE DOOR TO THE DOCTOR'S
OFFICE, OUR WORK GOES DEEPLY IN
THE COMMUNITY.
CLINICIAN ARE DEEPLY PART OF
THEIR COMMUNITY AND OUR RESEARCH
NEEDS TO GO THERE AS WELL.
THAT'S THE THEME OF ONE OF THE
NEXT BIG INITIATIVES THAT NOW
BEING LAUNCHED ACROSS ALL OF THE
NIH THAT I'M THRILLED TO REPORT
ON TODAY.
NEXT SLIDE.
THIS IS CALLED COMMUNITY
ADVANCING RESEARCH EQUITY FOR
HEALTH.
IT DEALS WITH THAT MAP THAT I
WAS TELLING YOU ABOUT WHERE WE
HAVE DISPARITIES, WE HAVE POOR
OUTCOMES, WE DON'T HAVE
RESEARCH.
IT LOOKS -- IT HAS A COUPLE
MAJOR PRINCIPLES.
NUMBER ONE, IT INVOLVES PRIMARY
CARE ENVIRONMENT.
IT IS NOT A SPECIALTY NETWORK.
WE LEAVE THAT TO NCI TO RUN ITS
ONCOLOGY CLINICAL TRIALS
NETWORK.
YOU KNOW, ALL OF THE OTHER MAJOR
SPECIALTY NETWORKS.
THIS IS ABOUT PRIMARY CARE.
WHY?
BECAUSE PRIMARY CARE IS WHAT IS
DESPERATELY NEEDED TO MOVE THE
NEEDLE ON SOME OF THE THESE
MAJOR ISSUES THAT WE HAVE IN
HEALTH, PARTICULARLY IN LOW
RESOURCE COMMUNITIES.
THE SECOND THING IS IT DOESN'T
MAKE ASSUMPTIONS THAT WE KNOW
WHAT'S RIGHT FOR ANY GIVEN
COMMUNITY.
HEALTH CARE HAS TO MATCH
RESEARCH NEEDS, DIFFERENT IN
EASTERN KENTUCKY THAN MONTANA
THAN IN LEREDDO, TEXAS, THAN
INNER CITY QUEENS.
THERE MIGHT BE SIMILARITIES BUT
WE DON'T PRESUPPOSE WE KNOW WHAT
THE COMMUNITY NEEDS.
WE HEAR ABOUT COMMUNITY
ENGAGEMENT IN RESEARCH.
USUALLY THAT MEANS WE'VE COME UP
WITH A RESEARCH IDEA, WE VET TO
OVERAGE ABOUT -- TO A BUNCH OF
PEOPLE IN A COMMUNITY AND SAY IS
THIS SOAK, -- OKAY, DO YOU WANT
TO TWEAK?
INSTEAD WE'VE GOT THE POWER OF
ALL OF NIH, 27 INSTITUTES AND
CENTERS.
THREE-QUARTERS OF THOSE
INSTITUTES AND CENTERS HAVE
RESEARCH THAT IS MEANINGFUL TO A
PRIMARY CARE SETTING, COULD BE A
COHORT, COULD BE AN
OBSERVATIONAL COHORT, CLINICAL
TRIAL, REGISTRY, ALL KINDS OF
DIFFERENT THINGS COULD BE
SOMETHING AS SIMPLE AS SIGN THEM
UP FOR THE "ALL OF US" PROGRAM
VERSUS A REALLY RESOURCE
INTENSIVE EFFORT TO IMPROVE
MATERNAL-FETAL OUTCOMES.
ANYTHING ALONG THAT DIFFICULTY
SPECTRUM AND ALONG THAT
ENGAGEMENT SPECTRUM WE HAVE THAT
ACROSS ALL OF NIH.
WE WANT TO GO INTO THESE
COMMUNITIES, ACROSS THE NATION,
GIVE THEM A BIG LIFT, HERE IS
WHAT WE HAVE AVAILABLE
WHAT DO YOU WANT TO PARTICIPATE
IN, WHAT SPEAKS TO YOUR
COMMUNITY?
IT'S A DIFFERENT TAKE ON
COMMUNITY ENGAGED RESEARCH.
THEY PICK FROM WHAT WE HAVE TO
OFFER, THAT PUTS IT ON US TO
MAKE SURE OUR OFFERINGS ARE
COVERING THE WATERFRONT ON WHAT
PEOPLE NEED TO BE HEALTHY.
AND I THINK WE'RE UP TO THAT
CHALLENGE WITH OUR -- WITH ALL
OF NIH.
THIS IS JUST A LITTLE MAP THAT
TELLS YOU OTHER THINGS.
WE NEED TO INTEGRATE RESEARCH IN
THE CLINICAL CARE ENVIRONMENT,
GOING INTO PRIMARY CARE, BETTER
MAKE IT EASY AND STREAMLINED AND
FIT WITH WHAT A PRIMARY CARE
CLINIC NEEDS TO BE ABLE TO
EXECUTE EVERY DAY, WHICH AS WE
KNOW IS REALLY HARD.
WE NEED TO ALSO ENGENDER TRUST
IN SCIENCE.
WHY?
BY ASKING PEOPLE WHAT MATTERS TO
THEM, AND LETTING THEM HAVE THE
CHOICE.
AND THEN THERE'S LOTS OF OTHER
CONCEPTS YOU CAN SEE ON THIS
SLIDE.
BUT THE BOTTOM LINE IS CARE FOR
HEALTH, WHICH IS STARTING IN
PILOT MODE, IMMEDIATELY, FIRST
NETWORK SITES BEING ANNOUNCED
NOW.
WHY PILOT?
WE'VE GOT TO LEARN HOW ARE WE
GOING TO EXECUTE ON THIS NEW
IDEA SO WE'LL BE IN PILOT MODE.
FOR A LITTLE WHILE.
UNDERSTANDING WHAT IT'S GOING TO
TAKE TO BE ABLE TO SUCCESSFULLY
DO PRIMARY CARE RESEARCH IN
THESE COMMUNITIES AND I
SINCERELY MEAN IT.
WE NEED COMMUNITIES THAT HAVE
NEVER PARTICIPATED IN RESEARCH
BEFORE.
SO WE'LL PILOT.
AND THEN WE'LL SCALE.
WE'RE GOING TO LOOK FOR THIS
SPECTRUM LEAVING NO ONE OUT WITH
A DEDICATED EFFORT TOWARD THIS,
I HOPE, FOR THE FORESEEABLE
FUTURE.
SO LOOK FOR THIS.
SEE HOW IT GROWS.
CONTRIBUTE TO IT.
THIS IS A PLACE TO BRING THESE
IDEAS THAT WILL BE ON THE
CUTTING EDGE OF HEALTH.
OKAY.
SO NEXT ONE.
JUST TALKED ABOUT THIS ALREADY.
TO YOUR PILOT PHASE, WE'RE
GETTING -- GOING AND THEN WE
EXPECT TO SCALE IT.
YOU CAN KEEP GOING.
NEXT SLIDE.
HERE'S THE NEXT ONE.
THIS IS ANOTHER BIG OVERARCHING
ALL OF NIH ACTIVITY.
WHERE DO WE GO FOR OUR DATA?
WE'VE TALKED A LOT ABOUT DATA
SHARING.
WE NEED TO SHIFT TO DATA USE.
WE NEED TO SHIFT TO AN ECOSYSTEM
THAT ALLOWS US AS NIH WHO HAVE
ACCESS TO ALL OF THIS DATA, WE
DO, TWO YEARS AGO THIS JANUARY
THERE WAS REQUIREMENT FOR EVERY
NIH-FUNDED RESEARCH PROJECT TO
BE ABLE TO SAY HERE'S HOW YOU'RE
GOING TO SHARE YOUR DATA.
BUT WE DIDN'T SAY HOW THAT WAS
ALL GOING TO COME TOGETHER
ACROSS ALL OF NIH.
AND SO, ME, RESEARCHER, WHEN I
WAS AT DANA-FARBER WANTING TO
KNOW ABOUT MAYBE, YOU KNOW, IF
WE TOOK THE UNIVERSE OF PEOPLE
WITH AUTOIMMUNE DISEASES,
CROSSED WITH UNIVERSE OF PEOPLE
WITH EPITHELIAL TUMORS, WHAT
DOES THAT INTERSECTION LOOK
LIKE?
WHERE WOULD YOU GO TO GET THAT
DATASET?
RIGHT?
THIS IS WHAT WE WANT TO CREATE
AT THE NATIONAL LIBRARY OF
MEDICINE.
THIS IS A BIG THING.
THIS IS A HUGE ENDEAVOR.
IT'S ENVISIONED AS KICKING UP
THE NIH, TO BE AN EPICENTER FOR
NIH-FUNDED RESEARCH TO ADVANCE
ALL THE NEW TOOLS WE HAVE, THAT
ALLOW US TO INTERROGATE DATA,
DATA ANALYTICS, DATA SCIENCE, TO
PROVIDE SUPPORT FOR PEOPLE TO
KNOW HOW TO FIND THE DATA, WHAT
DATA THEY NEED, HOW CAN THEY GET
ACCESS, SO EDUCATIONAL PROGRAMS
TO EXPAND THE FIELD OF
BIOMEDICAL INFORMATICS AND DATA
SCIENCE CAPABILITIES.
IT WILL BE AN OPEN SCALABLE AND
FEDERATED DIGITAL ECOSYSTEM.
THAT MEANS PEOPLE WILL KEEP
THEIR HOLDINGS WHERE THEY ARE,
BUT IF I KNOW THAT A RESEARCHER
IN CHICAGO HAS A DATASET THAT I
NEED, I CAN GO TO THE NLM AND
SAY, HEY, CAN YOU HELP MAKE THE
CONNECTION, BRING THAT DATASET
IN SO WE KNOW HOW TO USE IT.
ALSO KEY FOR PRIVACY PROTECTED
USE OF DATA FROM THE CLINICAL
CARE ENVIRONMENT, THAT WILL BE A
BIG NEW FOCUS OF THIS.
AND MOST OF ALL, A FRONT DOOR
WHERE BIOMEDICAL OR CLINICAL
RESEARCH TRAINEES, PATIENTS,
ADVOCATES, ANYONE SEEKING
ANSWERS TO NOVEL RESEARCH
QUESTIONS, CAN OBTAIN ACCESS TO
THE DATA AND AN LIT I -- ANALYC
TOOLS AND CONSULTATION IN DATA
SCIENCE.
THIS IS NOT FOR THE FAINT OF
HEART.
WE REALLY MEAN THIS.
BUT WHO IS GOING TO DO IT?
IF NOT THE NIH, UNDERSTOOD OUR
AMAZING RESOURCE, THE NATIONAL
LIBRARY OF MEDICINE.
STAY TUNED.
THE MANTRA HERE IS NOT JUST DATA
SHARING, DATA USE TO IMPROVE
HEALTH FOR EVERYBODY.
OKAY.
NEXT SLIDE.
AND THEN JUST A FEW I THINK
CLOSING POINTS, I AM -- I SPENT
SOME TIME IN A BASIC RESEARCH
LABORATORY, I STILL GO TO LAB
MEETINGS, FUNDAMENTAL SCIENCE IS
FASCINATING.
I LOVE IT.
IT'S WHERE I FEEL MY VERY FIRST
WORK WAS.
BUT THEN I MOVED ON TO THE
CLINICAL RESEARCH SITE.
WHY?
BECAUSE WE -- I KNEW WE HAD
FOUNDATIONS FROM FUNDAMENTAL
SCIENCE THAT ALLOW US TO MOVE
FORWARD INTO THE CLINICAL
SPHERE.
IT'S REALLY IMPORTANT TO
REMEMBER THAT WITHOUT THAT WE'RE
LOST.
OUTCOMES BASED RESEARCH WON'T
FLOURISH WITHOUT SUPPORT FOR
CURIOSITY-DRIVEN BASIC SCIENCE.
EVERYONE KNOWS THIS QUOTE FROM
THE '40s, BASIC RESEARCH LEADS
TO KNOWLEDGE, NEW PRODUCTS AND
PROCESSES DO NOT APPEAR FULL
GROWN, THEY ARE FOUNDED ON NEW
PRINCIPLES WHICH WITH
PAINSTAKINGLY DEVELOPED BY
RESEARCH IN THE PURIST REALM OF
SCIENCE, WHERE WOULD WE BE IF
COVID LANDED ON US WITHOUT 60
YEARS OF FUNDAMENTAL RESEARCH
AND WHY ARE WE LOST, WE NEED
YOUR COMMUNITY TO HELP HERE, WHY
ARE WE LOST TRYING TO TACKLE
LONG COVID?
BECAUSE WE DON'T UNDERSTAND THE
FUNDAMENTAL BIOLOGY OF
POST-INFECTIOUS SYNDROMES,
RIGHT?
I THINK COVID IS JUST A PREMIER
EXAMPLE, INVESTMENTS IN
FUNDAMENTAL SCIENCE LET US GET A
VACCINE, WE'RE AT SEA RIGHT NOW
AND NEED MUCH MORE WORK IN A
FUNDAMENTAL UNDERSTANDING OF
WHAT LONG COVID MEANS.
SO COULDN'T GIVE A BETTER
EXAMPLE THAN THAT.
NEXT SLIDE.
I'M SPEAKING TO THOSE WHO
UNDERSTAND HOW REREST IN -- WE
REST IN THE CLINICAL SPHERE ON
THOSE WHO BRING SCIENCE TO THE
CLINIC.
THERE'S WIDESPREAD CONCERN ABOUT
THE NIH BUDGET.
NEXT SLIDE.
WE'RE VERY MUCH FOCUSED ON
GETTING THROUGH THIS PERIOD IN
2024 OF RESTRICTED BUDGETS.
AND TRYING TO GET THROUGH THIS
YEAR IN 2024 WITHOUT LOSING
SCIENTISTS, GOD HELP US NOT
LOSING THE NEXT GENERATION.
ALWAYS THE MOST VULNERABLE, IN
TIMES OF BUDGET STRESS, I KNOW
THE PAY LINES FOR GRANTS
DECLINED AT NIAMS AND OTHER
INSTITUTES.
HOWEVER, WE'VE USED OUR SELECT
ABILITY THAT MAY HAVE SCORED
BEYOND THE PAYLINE, INSTITUTES
CONTINUE TO DO THIS TO SUPPORT
HIGH PRIORITY PROJECTS.
I AGREE VERY MUCH WITH THE
APPROACH NIAMS IS TAKING
LIMITING THE SIZE RATHER THAN
THE NUMBER OF AWARDS.
I GET ASKED YOUR AWARDS ARE TOO
SMALL.
WE WANT PAY OUR POSTDOCS ON THE
AWARDS YOU ARE ABLE TO GIVE.
WE'RE ACUTELY AWARE THAT THE
MONEY NIH PROVIDES IS NOT
SUFFICIENT TO COVER FULLY WHAT
IT TAKES FOR THE RESEARCH.
EVERY TIME I MEET WITH A
UNIVERSITY PRESIDENT OR A
DIRECTOR OF RESEARCH PROGRAM, I
ASK THEM, OKAY, OUR BUDGET IS
WHAT OUR BUDGET IS.
WE HAVE A COMMITMENT TO GET
EVERYTHING OUT THE DOOR THAT WE
POSSIBLY CAN FOR INVESTIGATOR
INITIATED RESEARCH.
WHAT DO YOU WANT?
DO YOU WANT FEWER BIGGER AWARDS?
OR MORE SMALLER AWARDS?
AND WHAT I'VE HEARD UNIFORMLY IS
THAT THOSE WHO ARE IN CHARGE OF
REALLY MAKING IT WORK AT OUR
ACADEMIC INSTITUTIONS AND OUR
INSTITUTES ARE TELLING ME MORE
SMALLER IS WORKING BETTER FOR US
THAN FEWER BIGGER.
ALTHOUGH, I WILL JUST, YOU KNOW,
OF COURSE YOU KNOW THERE ARE
SIGNATURE PROJECTS, PROGRAM
PROJECT AWARDS, BIG INSTITUTE
AWARDS, THAT ARE IN THE BIGGER
FIELD.
I'M TALKING ABOUT HOW ARE WE
MANAGING R01s, THE BREAD AND
BUTTER OF WHERE EVERYBODY IS
DOING OUT THERE.
SO RIGHT NOW FOR THOSE, THE
STRATEGY IS STILL SMALLER AND
MORE.
BUT WE'RE OPEN.
I WANT TO SAY ANY OF THESE
CONSIDERATIONS FOR HOW WE USE
OUR MONEY, WE'RE ABSOLUTELY OPEN
TO RECOMMENDATIONS FROM THIS
GROUP, FROM ANYONE OUT THERE, TO
HOW WE CAN DO IT BETTER BECAUSE
WE ALSO DON'T WANT TO ASSUME
THAT WE KNOW WHAT'S HAPPENING
OUT THERE ON THE GROUND.
SO THAT'S WHERE WE ARE TODAY.
IN A VERY BUDGET-CONSTRAINED
SITUATION.
OPEN FOR MORE DISCUSSION AND OF
COURSE ALWAYS OPEN FOR MORE
MONEY WHICH WOULD MAKE THIS
PROBLEM MUCH LESS PAINFUL THAN
IT HAS BEEN OVER THE LAST YEAR.
OH BOY, THE FISCAL YEAR 2025
PRESIDENT'S BUDGET WE'RE
DELIGHTED TO SEE, AN NIH PROGRAM
LEVEL, IT GOES FOR ALMOST
$2.8 BILLION INCREASE, ALMOST 6%
INCREASE AS OPPOSED TO LAST
YEAR, .7% DECREASE.
SO FINGERS CROSSED FOR THE
FISCAL YEAR 25 PRESIDENT'S
BUDGET.
OKAY.
NOW I WANT TO HIGHLIGHT SOME
THINGS THAT I CERTAINLY AM SO
PROUD OF THAT NIAMS HAS PRODUCED
OVER THE LAST YEAR.
I DO A BLOG EVERY WEEK.
HIGHLIGHT EXCITING NEW RESEARCH.
AND THERE'S BEEN SOME THRILLING
THINGS COME OUT OF THIS
INSTITUTE.
NEXT SLIDE.
THAT I WANT TO HIGHLIGHT.
NEXT SLIDE.
I LOVE THIS ONE-RUN. -- I LOVE .
ONE THING THAT CAUGHT MY
INTEREST AS A WOMAN, SOMEBODY
WHO REALLY THINKS ABOUT
AUTOIMMUNE DISEASES AND WHAT
THEY MEAN, WHAT UNDERSTANDING
THEM CAN MEAN FOR ALL OF
MEDICINE, NOT JUST THE FIELD OF
IMMUNOLOGY, THIS ONE AUTOIMMUNE
DISEASES MAKING UP THE THIRD
MOST PREVALENT DISEASE AMONG
WOMAN, AS MANY AS 4 OUT OF 5
PEOPLE WITH AUTOIMMUNE DISEASE
ARE FEMALE.
STANFORD FOUND THIS SEX-BASED
DIFFERENTIAL MIGHT BE DOING TO
THE FACT FEMALES HAVE TWO X
CHROMOSOMES, GENE DOSING NEEDS
TO BE REGULATED SOMEHOW.
AND THAT COULD BE THROUGH
MOLECULES EXIST, IN AN
INTERESTING WAY.
MOLECULES THEMSELVES ARE
NECESSARY TO KEEP FEMALE CELLS
FROM PRODUCING TOO MUCH PROTEIN
ENCODED ON X CHROMOSOMES BUT CAN
ENCOURAGE THIS PROTEIN ITSELF
CAN ENCOURAGE FORMATION OF ODD
CLUMPS OF RNA, DNA, PROTEINS
DOWNSTREAM EFFECTS, DOWNSTREAM
ELEMENTS THAT CAN TRIGGER STRONG
AUTOIMMUNE RESPONSES.
IF THEY ARTIFICIALLY TURNED ON
IN MALE MICE THEY BECAME MUCH
MORE SUSCEPTIBLE TO DEVELOPING A
LUPUS LIKE CONDITION.
INTERESTING WORK, IMPLICATIONS
FOR EARLY PREVENTION, TREATMENT,
ALL KINDS OF FEATURES OF GETTING
CONTROL OVER OUR IMMUNE SYSTEM
WHEN IT ACTS UP.
NEXT SLIDE.
OSTEOPOROSIS AFFECTS MORE THAN
200 MILLION PEOPLE AROUND THE
WORLD, ESPECIALLY COMMON IN
WOMEN AFTER MENOPAUSE, DUE TO
DECLINING LEVELS OF ESTROGEN.
A STUDY SUPPORTED BY NIAMS WHICH
ALSO FEATURED IN AUGUST SHOWED
NEWLY DISCOVER HORMONES IN THE
BRAINS OF LACTATING MOTHERS KEEP
BRAINS STRONG IN MICE, EVEN
THOUGH ESTROGEN LEVELS DIP,
CALCIUM IS STRIPPED FOR MILK
PRODUCTION.
THESE BONE LOSSES REVERSE AFTER
LACTATION ENDS.
AT LEAST PART BECAUSE OF THE
HORMONE WHICH IS CALLED CCN3,
NEW DISCOVERY.
ANOTHER GOOD EXAMPLE FINDING AN
ANSWER TO SCIENTIFIC PUZZLE, HOW
DOES A WOMAN'S BONE STAY STRONG
EVEN DURING LACTATION?
COULD HAVE CLINICAL
IMPLICATIONS.
IN CASE TREATING PEOPLE WITH
BONE LOSS, ESPECIALLY BECAUSE F
LOSS OF ESTROGEN.
SOME PEOPLE HAVE PAIN IN JOINTS
EVEN THOUGH THEY DON'T HAVE
OBVIOUS MANIFESTATION OF
INFLAMMATION.
DISCOVERED BY RESEARCHERS IN NEW
YORK, MADE IT POSSIBLE WITH HELP
OF MACHINE LEARNING TO PINPOINT
PAIN ASSOCIATED PATTERNS OF GENE
ACTIVITY IN JOINT TISSUE, THEY
CARRIED FINDINGS FROM HUMANS
INTO MICE TO UNDERSTAND BETTER
WHY PAIN RECEPTORS WERE BEING
ACTIVATED EVEN THOUGH THE
CLASSICAL SIGNS OF INFLAMMATION
WERE NOT THERE, ULTIMATELY HOPED
TO TREAT RUMOROID ARTHRITIS
RELIEF FROM PAIN.
PROGRAMMED CELL DEATH IS
IMPORTANT TO UNDERSTAND IN
CANCER.
EFFECTIVE CLASS OF IMMUNOTHERAPY
DRUGS BLOCK INTERACTION PREMIUM
PROGRAMMED CELL DEATH ONE AND A
PROTEIN -- A LIGAND PD-L1.
BLOCKING THIS CREATES BREAKS ON
THE IMMUNE SYSTEM, ALLOWS IT TO
TAKE OFF THE BRAKES, ALLOWS
IMMUNE SYSTEM TOE RESPOND TO A
CANCER, WORKING ON TREATMENT FOR
AUTOIMMUNE DISEASE THAT
STIMULATE THIS PROTEIN
INTERACTION, TO TAMP DOWN THE
IMMUNE SYSTEM.
A STUDY IN MARCH LOOKED AT ANY
INTERACTION, VERY IMPORTANT
DETAILS TO UNDERSTAND AND KNOW
DEVELOPING NEW DRUGS TO TREAT
CANCER AND AUTOIMMUNE DISEASE
THE YIN AND YANG.
I WANT TO SHARE CORE PRESENCE
PELLS.
OUR WEATHER -- OUR WACHOVIA ISY
FINISHED WHEN PEOPLE LIVE LONG
AND HEALTHY LIVES.
WE SHOULD CELEBRATE SUCCESS,
REMAIN HUMBLE IN THE FACE OF
HUMAN SUFFERING, APPROACH OUR
WORK TO MAKE LIFE BETTER FOR
PEOPLE WITH GREAT URGENCY.
WITH THAT I'LL CLOSE.
THANK YOU FOR THE OPPORTUNITY TO
SPEAK, I'D BE HAPPY TO TAKE ANY
QUESTIONS.
>> SO THANK YOU SO MUCH.
AND HOW NICE OF YOU TO HIGHLIGHT
SOME OF THE WORK THAT WE'VE
SUPPORTED.
WE APPRECIATE THAT.
>> EASY TO DO.
>> WE HAVE PLENTY OF TIME FOR
DISCUSSION NOW, ASSUMING DR.
BERTAGNOLLI DOES.
BEFORE YOU LEAVE, DR.
BERTAGNOLLI, WE WANT TO GET A
PHOTO WITH YOU.
GIVE US A HEADS UP WHEN WE'RE
THEY FIVE MINUTE POINT.
ON THAT NOTE, SO, YES, SHARON,
PLEASE.
>> HI.
THANK YOU SO MUCH FOR A VERY
INFORMATIVE REPORT.
I APPRECIATE THAT.
I HAVE TWO QUESTIONS.
ONE'S PART 1 AND PART 1, THE
OTHER IS JUST A QUESTION.
I'LL START WITH THE BUDGET.
DO YOU THINK THAT THE OUTCOME OF
THE ELECTION WILL CHANGE THE
BUDGET AT ANY POINT IN TIME?
>> WELL, I GET TO WATCH THE NEWS
JUST LIKE YOU ALL DO.
AND I CAN TELL YOU THAT WE HAVE
NIH BUDGET WATCHERS CONSTANTLY,
BECAUSE THERE'S LOTS OF THINGS
THAT HAVE TO HAPPEN.
FIRST, WE NEED A CONTINUING
RESOLUTION SO WE DON'T GET SHUT
DOWN THE END OF THIS MONTH.
THAT WOULD BE A GOOD FIRST STEP.
AND THEN I HAVE TO SAY THAT ONE
OF THE THINGS I HAVE BEEN TRULY
GRATEFUL FOR IS THAT NIH HAS
REALLY WONDERFUL BIPARTISAN
SUPPORT FROM CONGRESS.
WE REALLY DO.
I MEAN WHOEVER SITS IN THE WHITE
HOUSE IS IMPORTANT BECAUSE THEY
SAY HERE'S THE PRESIDENT'S
BUDGET, YOU SAW THAT REALLY
BEAUTIFUL $2.77 BILLION
INCREASE.
THAT'S WHAT THE PRESIDENT SAYS
THEY WANT.
BUT IT'S CONGRESS WHO MAKES THAT
HAPPEN.
AND I REALLY CAN TELL YOU FOR ME
PERSONALLY I HAVE REALLY
TREMENDOUS SUPPORT AND GREAT
INTERACTIONS A BOTH SIDES OF THE
AISLE.
SO, I HAVE TO SAY I AM ALWAYS AN
OPTIMIST BUT CONFIDENT THAT OUR
GREAT SUPPORTERS WILL FUND US
THE WAY WE REALLY WANT TO BE IN
2025.
FINGERS CROSSED.
>> EMILY WAKEFIELD IS
PARTICIPATING ONLINE, AN EARLY
CAREER INVESTIGATOR SERVING AS
AD HOC TODAY.
EMILY?
>> THANK YOU.
I'M EXCITED.
THANK YOU FOR A WONDERFUL
PRESENTATION.
I ALSO REALLY LOVE THE PUSH TO
BE INCLUSIVE PARTICULARLY WITH
MARGINALIZED COMMUNITIES.
I THINK SOME OF THE THINGS THAT
I STRUGGLE WITH IS, YOU KNOW, A
LOT OF THE SOLUTIONS TO BEING
MORE INCLUSIVE AND TARGETING
POPULATIONS IS REALLY PARTNERING
WITH THEM.
EVEN AS EARLY ON AS POSSIBLE,
EVEN ON THE DESIGN STAGE OF THE
METHODOLOGY, WHICH I FEEL LIKE
WHEN WE'RE PUTTING GRANTS
TOGETHER WE HAVE TO SHOW
METHODOLOGY AHEAD OF TIME.
WHICH CREATES -- WE'RE GUESSING
WHAT MIGHT WORK WITH THE
COMMUNITY BUT PARTNERING WITH
THEM ALSO INCLUDES LIKE PAYING
THEM FOR THEIR TIME, FROM THE
GET-GO AS WELL.
I HAVE A DIVERSITY TASK FORCE
I'M WORKING WITH RIGHT NOW, BUT
THE FUNDING'S GOING TO END.
I LOVE THEIR INPUT BUT DON'T
HAVE RESOURCES TO GET THEIR
INPUT FROM THE START OF THE
GRANT AND I DIDN'T KNOW IF
THERE'S ANY CREATIVE IDEAS HOW
DO WE SUPPORT THIS WORK.
MAYBE EVEN BEFORE THE GRANT IS
SUBMITTED TO MAKE SURE THAT WE
HAVE THEIR IDEAS INCLUDED PRIOR
AND MAKING SURE PART OF THE
SCIENCE, YOU KNOW, AS WE'RE EVEN
THINKING ABOUT IT FROM THE
DESIGN STAGE.
>> THAT IS SUCH A GOOD POINT.
I'M GLAD.
THANK YOU FOR HAVING THAT
QUESTION.
IT ALLOWS ME TO TALK ABOUT THAT.
ONE OF THE MAIN FEATURES OF CARE
FOR HEALTH -- LET ME BACK UP.
BEFORE I CAME TO NIH I DID
RESEARCH WITH DR. NORMAN
COLEMAN, RADIATION ONCOLOGIST AT
NCI, ON THE PINE RIDGE
RESERVATION, A WONDERFUL LUNG
CANCER PREVENTION PROJECT.
SO WONDERFUL TO WORK WITH THE
BEAUTIFUL PEOPLE ON PINE RIDGE,
AND THEN THE GRANT STOPPED.
EVERYTHING STOPPED.
WE CANNOT DO THAT.
WE CANNOT LET THAT HAPPEN IN
THESE COMMUNITIES THAT HAVE
PARTICULAR CHALLENGES.
SO, WHAT WE HAVE TO -- THAT'S
ONE OF THE MAIN -- ANOTHER MAIN
RAIN FOR CARE FOR HEALTH BECAUSE
NCI IS PRETTY BIG BUT EVEN NCI
COULDN'T KEEP CONTINUOUSLY A
PROGRAM FUNDED ON PINE RIDGE BUT
ACROSS ALL OF NIH THAT'S WHERE
WE CAN DO IT.
AND SO WHAT YOU DESCRIBED IS
ABILITY TO GO INTO COMMUNITIES,
BE PART OF THEM, UNDERSTAND
THEM, KNOW WHAT'S HAPPENING
THERE.
THAT'S ALSO ONE OF THE THINGS
THAT WE'RE WORKING ON IN THIS
PILOT PHASE ROLLING OUT CARE FOR
BELT, THE BEST WAY TO DO THAT.
A LOT OF PEOPLE HAVE DONE THIS
BEFORE.
ONE-OFFS, WE'RE TRYING TO HAVE
THAT GO CONTINUOUSLY.
WHAT DO I ENVISION?
LET'S SAY YOU HAVE SOMEBODY WHO
IS LOOKING AT A PROJECT FOR
PREVENTION OF I'LL JUST PICK THE
OSTEOPOROSIS ONE, YOU WANT TO
PUT OUT -- YOU HAVE A STUDY TO
LOOK AT PREVENTION OF
OSTEOPOROSIS WITH A NEW AGENT.
YOU GO INTO A COMMUNITY WHERE
THEY ARE WORKING ON A BUNCH OF
THINGS, MAYBE AN OBESITY STUDY,
MAYBE MENTAL HEALTH WORK BUT THE
TEAM IS THERE BECAUSE PATIENTS
TONIGHT THINK OF THEMSELVES IN
THE OF
ONLY BEING ONE DISEASE, THEY
THINK ABOUT TOTAL HEALTH.
WE GO DISEASE BY DISEASE, WE
WANT TO GO TOGETHER FOR ALL
DEVELOPMENT ACTIVITIES.
THANK YOU.
>> I HAVE A QUESTION ON THIS.
THANK YOU FOR THE INSPIRING
PRESENTATION, BEFORE YOU CAME I
WAS GOING TO ASK A QUESTION
RELATED TO THIS.
WE TALK A LOT ABOUT INVESTIGATOR
AND TRAINEES NOT NECESSARILY
REGARDING PARTICIPANTS AND LIKE
RESEARCH PATIENTS AND SO GLAD TO
SEE YOUR VISION ON THIS
COMMUNITY AND TOPIC, WHICH MY
QUESTION WAS WHAT NIAMS AND NOW
NIH IS GOING TO DO TO ENGAGE
MORE RESEARCH PARTICIPANTS AND
PATIENTS, ONE THING I WAS
THINKING BECAUSE AT THIS MOMENT
I FELT A LOT OF FOUNDATION, FOR
EXAMPLE ARTHRITIS FOUNDATION,
THEY HAVE STRONG PATIENT GROUP
AND I'M GLAD TO SEE YOU SHOW THE
PHOTOS, YOU'RE IN THE PATIENT'S,
MEETING TOGETHER, POTENTIAL
PARTNERSHIP WITH PRIVATE
FOUNDATION, THEY HAVE THEIR
LOCAL CHARTER AND WITH PATIENT
ENGAGEMENT TO DO SO AND ON TOP
OF THIS ALSO HAVE THIS KIND OF
NIH PARTICIPANTS COMMUNITY LIKE
COMMUNITY IN A WAY SO PEOPLE
FEEL IT'S AN HONOR AND
CONTRIBUTION TO OUR COUNTRY, BY
PARTICIPATING IN THIS STUDY, NOW
YOU'RE NIH RESEARCH STUDY
PARTICIPANTS, ON ONE SIDE VOICE
FROM PATIENTS AND PARTICIPATION,
ESPECIALLY REPRESENTED COMMUNITY
VERY IMPORTANT FOR STUDY DESIGN
AND OUTCOME.
ON THE OTHER HAND ALSO FOUND FOR
CLINICAL STUDIES ONE CHALLENGE
IS ENROLLMENT.
A LOT OF TIMES WE'RE FACING A
LOT OF ENROLLMENT CHALLENGES,
AND ESPECIALLY TRY TO RECRUIT
UNDERREPRESENTED POPULATIONS SO
IF WE HAVE A KIND OF COMMUNITY
MORE RESOURCES THAT P.I.
INVESTIGATOR CAN USE I THINK
IT'S REALLY A MUTUAL BENEFICIAL
STRATEGY.
>> I THINK IT'S VERY FOOLISH OF
US TO THINK THAT EVEN AN AGENCY
AS LARGE AS THE NIH CAN DO ANY
OF THIS ALONE.
THAT IS, NUMBER ONE, I THINK
THAT'S FOOLISH.
WE REALLY HAVE TO EMBRACE ANY
PARTNER WHO CAN SHARE THIS
VISION WITH US.
WE CAN BRING A LOT OF STRENGTH.
WE CAN BE MAYBE A PLATFORM TO
HELP EVERYBODY WORK TOGETHER.
BUT WE'RE ABSOLUTELY, AND I'LL
JUST SAY BEFORE MOVING OVER TO
THIS JOB AT NIH I WORKED AT NCI,
AND, YOU KNOW, NCI HAS THE
NATIONAL CANCER PLAN WHICH IS
ABOUT EVERY SINGLE PART OF
GOVERNMENT, EVERY SINGLE PART OF
SOCIETY, PARTICIPATING IN
PREVENTING AND TREATING CANCER.
I THINK WE FEEL THAT WAY ABOUT,
YOU KNOW, ALL OF THIS KIND OF
WORK.
SO I THINK YOU'VE GOT EXACTLY
THE RIGHT APPROACH.
BUT THERE'S GOT TO BE STRUCTURE
TO MAKE IT HAPPEN.
THAT'S WHAT WE'RE TRYING TO
PROVIDE.
THE STRUCTURE AND ONE LAST THING
I WANT TO SAY.
I ALSO MAYBE AS A CLINICIAN
BELIEVE PASSIONATELY IN THE
CLINICIAN-PATIENT RELATIONSHIP.
AND THAT'S ANOTHER THING THAT I
REALLY WANT TO SUPPORT AND
HARNESS AND REALLY TAKE
ADVANTAGE OF.
AND WHEN YOU TALK ABOUT ACCRUAL,
IT'S ABOUT -- IT'S ALSO ABOUT
THAT BUSY DOCTOR IN THE PRIMARY
CARE OFFICE WHO WOULD LOVE TO
ENROLL THE LAST FIVE PATIENTS,
BUT THEY HAD FIVE MINUTES EACH,
RIGHT?
SO THAT'S ANOTHER CHALLENGE THAT
I KNOW IS GOING TO BE VERY
DIFFICULT BUT WE SOMEHOW HAVE TO
TACKLE IT, CARE FOR HEALTH,
LEARNING HOW TO DO THAT.
>> AIMEE AND THEN STUART.
>> THANK YOU SO MUCH FOR
FEATURING THE GREAT RESEARCH
GOING ON IN NIAMS BECAUSE OF ALL
THE BURSTS THAT HAPPENED ACROSS
SKIN, MUSCLE, BONE, BIOLOGY OVER
THE LAST SEVERAL YEARS.
NIAMS BUDGET HAS REMAINED
RELATIVELY FLAT, RELATIVE TO
OTHER INSTITUTES, HOW ARE YOU
THINKING ABOUT THAT AS YOU
CONTEMPLATE FUTURE BUDGETS?
>> OUR BUDGETS ARE DIRECTED
TOWARDS VARIOUS INSTITUTES
DIRECTLY FROM CONGRESS.
SO, BASICALLY I DON'T HAVE A LOT
OF SAY, ALTHOUGH CERTAINLY I CAN
TELL YOU THAT ONE OF THE THINGS
THAT I CAN DO FROM MY POSITION
AND HAVE SUCH GREAT
COLLABORATION WITH, YOU KNOW,
PEOPLE LIKE DR. CRISWELL TO MAKE
THIS HAPPEN IS WE CAN ADVOCATE
FOR WHERE THE HIGH PRIORITY
RESEARCH AREAS ARE.
AND WE CAN ADVOCATE FOR FUNDING
THAT REALLY LIFTS ALL OF THE
INSTITUTES AND CENTERS.
YOU KNOW, AND REALLY ENABLES ALL
OF THE INSTITUTES AND CENTERS,
RATHER THAN -- SO WHAT I DON'T
WANT IS FOR NIAMS TO THINK, WE
ONLY HAVE THIS MUCH MONEY,
THAT'S ALL WE CAN DO.
WHAT WE WANT IS FOR NIAMS TO
SAY, OKAY, WE HAVE THIS MUCH
MONEY, WE'LL SPEND IT FOR WHAT
NOBODY ELSE WILL SPEND IT ON
THAT WE NEED AND THERE'S ALL
THESE OTHER COMMON RESOURCES WE
CAN DRAW UPON.
MY JOB IS MAKING THOSE COMMON
RESOURCES AS BIG AS POSSIBLE
BECAUSE THAT'S REALLY GOING TO,
YOU KNOW, IN THE FACE OF ME
BEING NOT THE ONE WHO DECIDES
WHERE THE MONEY GOES IN EACH
INDIVIDUAL BUDGET THAT'S WHERE I
CAN AMPLIFY WHERE EVERY I.C.
DOES.
WE TALK ABOUT THAT EVERY WEEK,
HOW CAN WE LEVERAGE EVERY
DIRECTION.
>> ABSOLUTELY A MAJOR PART OF
OUR STRATEGY.
YOU KNOW, THANK GOODNESS FOR THE
ENVIRONMENT THAT NIH THAT ALLOWS
US TO EXTEND WAY BEYOND OUR
BUDGET.
STUART AND THEN I SEE SHARON
ALSO AND BETH.
>> THANK YOU FOR A VERY
INSPIRING TALK.
I'M AN ORTHOPEDIC SURGEON, AND
RESEARCHER AT STANFORD.
I WANTED TO HIGHLIGHT THE FACT
THE SURGEON-SCIENTIST IS A DYING
BREED.
I'M WONDERING HOW NIH CAN FOSTER
A NEW GENERATION OF
SURGEON-RESEARCHERS TO AUGMENT
AND EVEN SURPASS WHAT IS
CURRENTLY GOING ON WITH REGARDS
TO SURGEON-SCIENTISTS, WITH
FUNDING AT NIH.
>> SO, WE DO NOT HAVE PROGRAMS.
WELL, THERE ARE -- PROGRAMS ARE
LARGELY FOCUSED ON FUNDAMENTAL
CLINICAL AND BIOMEDICAL AND
BEHAVIORAL QUESTIONS, RIGHT?
SO, CERTAINLY I CAN SAY EASILY
THAT SURGEONS HAVE A MAJOR ROLE
IN BRINGING REALLY IMPORTANT
EXPERTISE AND INSIGHT TO
PARTICULAR QUESTIONS.
WE ALSO TRY TO SUPPORT THE
BROADEST POSSIBLE RESEARCH TEAM
SO YOU'LL SEE WHEN SURGERY
ITSELF IS THE SPECIFIC TOPIC OF
THE RESEARCH, THAT'S EASY.
I KNOW THAT'S NOT WHAT YOU'RE
TALKING ABOUT.
I KNOW THAT VERY WELL.
YOU'RE TALKING ABOUT SOMEBODY
WHO IS MAYBE -- WHO IS A SURGEON
WHO MIGHT BE LIKE I WAS,
INTERESTED IN IMMUNOLOGY, AND
HAS TO COMPETE WITH EVERYONE
ELSE WHO DOESN'T HAVE A BUSY
SURGERY SCHEDULE, WHO IS ALSO
WORKING IN IMMUNOLOGY.
I WAS A PROGRAM DIRECTOR FOR
SURGICAL ONCOLOGY FELLOWSHIP,
ALSO THE HEAD OF A SURGERY
DIVISION FOR QUITE SOME TIME,
AND I'LL TELL YOU I BELIEVE MY
ANSWER AS NIH DIRECTOR IS THE
SAME AS MY ANSWER AS A LEADER IN
THE ACADEMIC FIELD.
FOR PEOPLE WHO WANTED TO SPEND A
SIGNIFICANT AMOUNT OF TIME,
DOESN'T MATTER IF THEY ARE A
SURGEON OR A RHEUMATOLOGIST,
PERFORMING CLINICAL CARE AND NOT
DOING RESEARCH, LEVERAGE,
LEVERAGE, PARTNER, PARTNER, BE A
PART OF TEAM SCIENCE.
YOU AS A SURGEON ARE A CRITICAL
COMPONENT OF TEAM SCIENCE AND
WILL BE ABSOLUTELY WELCOMED.
I DON'T THINK OUR MECHANISMS --
I THINK OUR MECHANISMS IN FACT
SUPPORT THAT.
AND THAT'S, TO ME, IT'S MORE OF
A PRACTICE DEMAND LIFE SCHEDULE
DEMAND ISSUE THAN IT IS SURGEON
VERSUS NOT SURGEON.
MAYBE I INCIDENT MAKE YOU HAPPY
WITH THE ANSWER BUT THAT WORKED
WITH MY TEAM AND I HAD SURGEONS
FULL-TIME CLINICIANS BUT WERE
INCREDIBLY IMPORTANT PARTNERS ON
R01s BUT I ALSO HAD SURGEONS
FULL TIME RESEARCHERS AND I
DON'T FEEL THEY EVER GOT A
DISADVANTAGE BECAUSE OF THEIR
DISCIPLINE.
>> GREAT.
THANK YOU.
SHARON, BETH, STEVE.
>> HI.
THE OTHER QUESTION I HAD WAS
RELATED TO CARE FOR HEALTH.
THANK YOU FOR THAT.
I'M EXCITED ABOUT THAT PROGRAM.
AND SO THE QUESTION WAS JUST IN
THE WAY OF MEASURING SUCCESS AND
JUST SEEING ABOUT THE WHOLE
PROGRAM HERE, ARE YOU
CONSIDERING THE SOCIAL
DETERMINANTS OF HEALTH IN DOING
THIS MODEL?
BECAUSE I'M THINKING THAT TO BE
REALLY SUCCESSFUL THEY HAVE TO
BE ADDRESSED IN THE PROCESS.
IN THINKING ABOUT THIS I THOUGHT
ABOUT THE TERM, THE T, TRUST,
EDUCATE, AWARENESS, WITH THESE
COMMUNITIES TRUST IS
TREMENDOUSLY IMPORTANT
ESPECIALLY WITH THE STRATEGIC
PLAN, WE TALK ABOUT CLINICAL
TRIALS.
ONE REASON PEOPLE OF DIVERSE
BACKGROUNDS DON'T PARTICIPATE
BECAUSE OF TRUST.
AND EDUCATION IS A BIG PART OF
THAT, AWARENESS.
I'M WONDERING PARTICULARLY
WITHIN YOUR PILOT MODEL HAVE
THOSE THINGS BEEN CONSIDERED?
>> I THINK SOCIAL DETERMINANTS
OF HEALTH ARE INTERWOVEN AT NIH.
IT'S THE AIR WE BREATHE.
WHY?
IT HAS PROFOUND EFFECT EVEN ON
FUNDAMENTAL BIOLOGY.
THAT'S HERE TO STAY, IT'S A
LARGE PART OF CARE FOR HEALTH
BECAUSE SOME DEFINING ADVERSE
SOCIAL DETERMINANTS OF HEALTH
ARE EXACTLY THE LOCATION -- THE
COMMUNITIES THAT HAVE THOSE
FEATURES ARE EXACTLY THE PLACES
WE ARE TARGETING FOR THIS
OVERALL NETWORK.
AND THEN ABOUT TRUST, I'M
ENCOURAGED BY A REALLY
INTERESTING RESULT THAT CAME OUT
FROM THE PEW TRUST RECENTLY.
IT'S SECONDED BY A NUMBER OF
OTHER WORLDWIDE ORGANIZATIONS
SHOWING WHEN YOU ASK PEOPLE WHO
DID THEY TRUST FOR HEALTH, THEIR
HEALTH, AND WHO DO THEY TRUST
FOR INFORMATION ABOUT THEIR
HEALTH, FOR SOME PRIMARY CARE
DOCTOR.
SECOND ON THE LIST, THEIR
PHARMACIST.
THIRD ON THE LIST ARE FRIENDS
AND FAMILY.
SO, THAT TELLS ME OUR FOCUS ON
PRIMARY CARE WILL BE AN
IMPORTANT ONE, AND HOPEFULLY
THAT WILL HELP.
THE LAST THING I'LL SAY, OUR
GUIDING PRINCIPLE HERE IS TRUST,
TO BE EARNED.
AND SO WE'RE GOING INTO THESE
COMMUNITIES WITH THE IDEA THAT
OUR RESEARCH WOULDN'T FLOURISH
UNTIL WE EARN THE TRUST.
AND THE WAY YOU EARN THE TRUST
IS BY LISTENING TO PEOPLE BEFORE
YOU EVEN TALK TO THEM ABOUT THE
RESEARCH STUDY YOU WANT, YOU GO
AND SO ONE OF THE FIRST THINGS
IS THE RESEARCH TEAM IS SAYING,
SIT DOWN WITH THESE PRIMARY CARE
DOCTORS AND THE PEOPLE IN THE
COMMUNITY AND SAY, OKAY, WHAT DO
YOU NEED?
WE'RE ALL OF NIH.
WHAT'S MOST IMPORTANT?
WHAT'S OF WHAT DO YOU WANT US TO
HELP YOU WITH?
I GUARANTEE YOU WE'LL HAVE
SOMETHING SOMEWHERE WE CAN PUT
INTO THOSE COMMUNITIES.
>> BETH?
>> GREAT TO HEAR FROM YOU.
EVERYTHING SOUNDS EXCITING.
THE CARE FOR HEALTH SOUNDS VERY
INTERESTING, EMPHASIS ON
IMPROVING OUTREACH TO THE RURAL
COMMUNITIES IS REALLY IMPORTANT.
JUST A COUPLE WORDS, PRIMARY
CARE IS DELIVERED BY MORE THAN
PRIMARY CARE DOCTORS.
SO THAT'S REALLY IMPORTANT
POINT, RIGHT ?
OB/GYN?
>> WE TALK THE U.S. PUBLIC
HEALTH DEFINITION OF PRIMARY
CARE.
>> CARDIOLOGIST, NOW I HAVE TO
IMAGINE DIABETES.
>> LET ME ADD THE ONE PLACE
WE'RE NOT COVERING INITIALLY
BECAUSE WE ARE USING THE U.S.
PREVENTIVE TASK SERVICE IS
EMERGENCY CARE.
BECAUSE WE'RE ALSO TAKING THE
VIEW, REMEMBER I SAID WE'RE
FOCUSING ALSO ON THE LONG-TERM
DOCTOR-PATIENT RELATIONSHIP SO
WE'RE NOT TAKING EPISODIC CARE
PROVIDERS LIKE THE EMERGENCY
ROOM AS BEING PART OF PRIMARY
CARE.
THAT'S IMPORTANT.
DO WE NEED TO GO THERE
EVENTUALLY, YES, BUT THAT'S NOT
GOING TO BE FIRST.
>> VERY INTERESTING.
SECOND PIECE THINKING ABOUT
OUTREACH I'M CURIOUS TO HEAR
YOUR THOUGHTS ON TELEHEALTH AND
I WANT TO PUT THIS BACKDROP, A
LOT OF US IN THIS ROOM CARE
ABOUT COMMUNITIES THAT HAVE
DIFFICULTY WITH MOBILITY, I TAKE
CARE OF A LOT OF DISABLED
PEOPLE.
I WAS SHOCKED IN THE PANDEMIC
HOW EASILY WE CONVERTED TO
TELEHEALTH AND WHAT YOU LOSE BY
NOT HAVING A FACE-TO-FACE
IN-PERSON, I LIKE TO LOOK AT
PEOPLE AND TALK TO THEM, BUT I
GAINED IT BY SEEING WHERE THEY
LIVE, WHICH I COULD SEE ON THEIR
SCREEN.
SO IT'S A TRADEOFF.
IT ISN'T NECESSARILY LESS GOOD
CARE BY TELEHEALTH, BUT IT IS
DIFFERENT.
SO THAT IS CAPACITY FOR OUTREACH
THAT WE WANT TO THINK MORE
ABOUT, RIGHT?
OH, YEAH.
AND ALL POSSIBILITIES ARE ON THE
TABLE FOR WHAT IT TAKES TO GET
PEOPLE TO HAVE BETTER OUTCOMES,
YOU KNOW, HOW ARE WE GOING TO
KEEP THEM HEALTHY, PREVENT
DISEASE, AND SO I CAN TELL YOU
THAT TELEHEALTH IS A BIG PART OF
IT.
IT'S REALLY INTERESTING, ONE OF
THE FIRST THINGS HAPPENING IN
MANY RURAL COMMUNITIES WHERE WE
HAVE INFECTIOUS DISEASE
CHALLENGES CAME OUT OF COVID,
YOU KNOW, POINT-OF-CARE TESTING,
IN-HOME TESTING NOW FOR ALL
KINDS OF DISEASES.
TESTS DELIVERED TO THE HOME,
TAKE A PICTURE OF THE RESULT
WITH A SMARTPHONE, IT GOES TO
THE DOCTOR, AND THE ANTIBIOTIC
ENDS UP IN THE MAIL, THOSE
THINGS HELP US CONQUER SOME
THINGS THAT, YOU KNOW, ARE
TERRIBLE THAT HAVE JUST BEEN
PERSISTENT AND SO THERE'S LOTS
OF --
>> WORKS FOR RESEARCH TOO.
WE RECRUITED TEN THOUSAND PEOPLE
IN AN ANTIBODY STUDY IN COVID,
RECRUITED 2500 PEOPLE REMOTELY
FOR OUR GENETIC STUDY,
COMPLETELY POSSIBLE.
>> YEAH.
I AGREE.
AND WE STILL HAVE TO PROVE IT'S
GOING TO REALLY IMPROVE HEALTH.
THE EARLY DATA SAYS YEAH, WE'RE
TOTALLY ON THE RIGHT TRACK.
I'LL REMIND EVERYBODY IT'S NOT
OUR CONVENIENCE WE'RE LOOKING
FOR.
IT'S REALLY MOVING THE NEEDLE ON
HEALTH.
SO WE'RE GOING TO DO THE
RESEARCH THAT REALLY JUSTIFIES
THAT.
>> STEVE, JINOOS, AND WE'RE
KEEPING OUR EYE ON THE CLOCK.
OUR PHOTOGRAPHER IS HERE.
STEVE AND JINOOS.
>> THANK YOU.
STEVE TAYLOR, ARTHRITIS
FOUNDATION, THANK YOU FOR BEING
HERE.
LOVE YOUR INITIATIVES.
I'D COMMENT ON MANY BUT I DO
WANT TO PIGGYBACK ON THE
TELEMEDICINE COMMENT.
WE'RE FUNDING A LARGE GRANT AT
THE ARTHRITIS FOUNDATION, TAKING
RHEUMATOLOGISTS TO TELEMEDICINE
TO BRING CARE TO THE PERSON NAH
OF THAT CAN'T DRIVE 200 MILES TO
THE RHEUMATOLOGY OFFICE AND
DOING AN EXAM BECAUSE WE KNOW
PATIENTS GO WHERE THEY TRUST THE
FIGURES, USUALLY PRIMARY CARE IN
RURAL AMERICA OR PINE RIDGE ON
THEIR RESERVATION, SO IMPORTANT
THAT WORK IN CARE WILL BE
IMPORTANT, WE'D LOVE TO PARTNER
IN ANY REGARD IN THAT.
I DO WANT TO MENTION
APPROPRIATION QUICKLY.
ONE OF THE STATEMENTS IN OUR
FOUNDATION IS URGENCY IS
TREATING ARTHRITIS, SOMETIMES IN
THE NIAMS SPACE OUR DISEASES ARE
LOOKED AT AS NOT SERIOUS, BUT
THERE'S SERIOUS COMPLICATIONS,
COMORBIDITIES, LIFE-THREATENING
DISEASES, AND JUST THE QUALITY
OF LIFE SO AS A COMMUNITY WE CAN
EDUCATE URGENCY OF DISEASE NIAMS
REPRESENTS SO THEY DON'T LOOK
THE AT US AS A CHRONIC DISEASE,
NOT AS IMPORTANT AS OTHER
DISEASE, IT AFFECTS 60 MILLION
PEOPLE IN THE U.S., A LARGE
POPULATION.
MANY HAVE DISABLING FACTORS,
QUALITY OF LIFE IS DAMAGED.
WE WANT TO MAKE SURE URGENCY
MATTERS AND IT'S NOT JUST A
CHRONIC DISEASE.
WE HAVE TO DO MORE TO MAKE SURE
CONGRESS AND SENATE UNDERSTAND
THAT AS A COMMUNITY AND LOVED
DR. CRISWELL'S REPRESENTATION OF
BEING OUT IN THE COMMUNITY AND
REPRESENTING US IN VARIOUS WAYS,
ORGANIZATIONS, CONFERENCES, ET
CETERA, TO MAKE SURE DISEASES
NIAMS REPRESENTS DOESN'T GET
PUSHED ASIDE AS STEP CHILDREN.
JUST A COMMENT, WE CAN ALL DO
BETTER.
>> THE OTHER THING I'LL ADD, IF
WE CAN CONQUER ARTHRITIS, WE'RE
GOING TO CONFER A -- CONQUER
OTHER DISEASES TOO.
THERE'S FUNDAMENTAL UNDERLYING
DISEASES.
HAVING A CROSS-CUTTING
ENVIRONMENT BECAUSE THE KIND OF
ADVANTAGES THAT WE'RE SEEING IN
THINGS LIKE EXIST PROTEINS OR
BONE-PRESERVING ARE GOING TO
HAVE EFFECTS ACROSS ALL OF
HEALTH.
SO THAT'S ALSO A VERY IMPORTANT
POINT THAT WE BRING UP WITH OUR
FUNDERS.
>> I MEANT TO SAY YOUR BLOG HAS
BEEN AMAZING.
NOT ONLY HIGHLIGHTING SCIENCE
BUT THE ATTACK ON SCIENCE IS SO
IMPORTANT FOR THE TRUST FACTOR.
BUT ALSO WE HAVE TO GET LOCAL
PRIMARY CARE PHYSICIANS TO TRUST
SCIENCE AND THE PATIENTS THROUGH
THEM TO TRUST SCIENCE AS WELL.
YOUR BLOG IS REMINDING PEOPLE
HOW MUCH SCIENCE BRINGS IN THEIR
DAILY LIFE, HOW MUCH WE'RE
ADVANCING VARIOUS AREAS, VERY
IMPORTANT, ESPECIALLY IN THE
LAST COUPLE YEARS.
>> THANKS.
GLAD TO HEAR THAT.
PEOPLE ARE HUNGRY.
THE BASE, THE LAY PUBLIC,
CERTAINLY THE INFORMED, YOU
KNOW, PHYSICIANS, YOU KNOW, WHO
REALLY CAN UNDERSTAND DEEP
SCIENCE, HUNGRY FOR THESE
RESULTS, RIGHT?
BECAUSE UNLESS YOU READ SCIENCE
AND NATURE MAGAZINE ALL THE TIME
YOU WON'T CATCH THEM.
SO THANKS.
>> JINOOS?
>> I'M A RHEUMATOLOGIST FROM
UCSF, CHANGING GEARS AND TALKING
ABOUT DATA USE, I'M WONDERING IF
THERE'S ANY EFFORT TO COLLECT
DATA ON SORT OF THE RESOURCES
NEEDED BY INVESTIGATORS TO SHARE
THEIR DATA, LIKE FOR EXAMPLE NLM
WILL SERVE AS A FRONT DOOR, ARE
WE ASKING QUESTIONS AND I'M
ASKING BECAUSE SOMETIMES IT'S
HARD FOR US TO GET STAFF
TOGETHER, GRANTS ENDED, A HUGE
BURDEN, I WONDER IF WE'RE
QUANTIFYING AND PUTTING
RESOURCES THAT MIGHT BE SMALL --
>> NLM ALREADY HAS A LOT OF
RESOURCES TOWARD THIS AIM.
AND, YOU KNOW, ABOUT DATA
STANDARDS, DATA STRUCTURES,
POSSIBLE FORMATTING, ALL THESE.
AND WHAT YOU'VE DESCRIBED IS
EXACTLY WHY YOU JUST SAID THE
WRONG WAY EVERYBODY DOES IT,
THIS IS EXACTLY WHY WHEN WE
ROLLED OUT THE NEW DATA SHARING
POLICY, IT WAS TELL US HOW
YOU'RE GOING TO DO IT BEFORE YOU
EVER STARTED TO DO THE RESEARCH,
BECAUSE, YEAH, YOU TRY TO DO IT
LATE IT'S DIFFICULT.
IF YOU THINK ABOUT IT AS PART OF
THE INITIAL DESIGN BEFORE THE
RESEARCH IS EVER STARTED, THEN
IT BECOMES MUCH SIMPLER.
IT'S ALSO CRITICAL THAT NLM BE A
RESOURCE FOR WHAT'S THE BEST WAY
TO DO THIS, YOU HAVE A LARGE
PROTEOMIC DATASET, WHAT'S THE
BEST -- WHAT ARE STANDARDS THAT
PEOPLE ARE USING, WHAT'S THE
BEST WAY TO STORE, HOW MUCH IS
IT GOING TO COST, WHAT ARE
POSSIBILITIES FOR MAKING IT
HAPPEN.
WE NEED NLM.
IT'S ALREADY A RESOURCE FOR THIS
KIND OF THING.
IT NEEDS TO EXPAND ITS CAPACITY
FOR THAT CONSIDERABLY.
A LOT OF PEOPLE DON'T KNOW WHAT
NLM CAN DO.
LET ME THROW THAT IN BECAUSE
WE'RE DONE.
LET ME THROW THAT IN.
AMAZING HOW WE NEED TO REMIND
PEOPLE, CALL THE NIH, CALL THE
PROGRAM DIRECTOR, CALL THE --
YOU KNOW, BE A SQUEAKY -- CALL
THE NLM.
BE A SQUEAKY WHEEL.
THERE'S SO MANY GREAT PEOPLE
HERE WHO WOULD LOVE TO HELP YOU
AND ADVISE YOU, I DON'T THINK
PEOPLE TAKE ADVANTAGE OF THAT AS
MUCH AS WE WOULD LIKE TO SEE.
THANKS.
>> GREAT.
WE HAVE ONE MORE MINUTE BEFORE
WE GET ORGANIZED FOR THE
PHOTOGRAPH.
I DON'T KNOW IF YOU KNOW, DR.
BERTAGNOLLI, THE THEME FOR OUR
COUNCIL MEETING FOLLOWING ON IS
COMMUNITY ENGAGEMENT.
ROBERT, GIVE DR. BERTAGNOLLI A
PREVIEW.
>> SURE.
FANTASTIC.
THANK YOU FOR ACCEPTING OUR
INVITATION.
THIS AFTERNOON WE'RE GOING TO
HONE IN ON WHAT IS COMMUNITY
ENGAGEMENT IN THE BIOMEDICAL
SCIENCES, RIGHT?
WE HAVE DR. SHANNON ZENK FROM
NINR, DIRECTOR.
DR. MONICA WEBB HOOPER, DEPUTY
DIRECTOR FOR MINORITY HEALTH AND
HEALTH DISPARITIES.
ALSO WE HAVE DR. KAREEM WATSON
FROM "ALL OF US."
WE'RE GOING TO HAVE DYNAMIC
CONVERSATIONS.
AGAIN, WE'RE GOING TO DISSECT
WHAT DOES IT MEAN TO DO
COMMUNITY ENGAGEMENT.
COMMUNITY-BASED PARTICIPATORY
RESEARCH.
I WOULD BE REMISS, I'M SORRY, IF
I COULD MAKE ONE COMMENT
REGARDING THE CARES FOR HEALTH.
WE HAVE TO BE CAREFUL NOT TO
HAVE OR TO DO HELICOPTER
RESEARCH.
A BEAUTIFUL PUBLICATION, "CELL,"
APRIL EDITION, COMMENTARY TALKED
ABOUT DIFFERENT INSTITUTIONS
GOING IN TO VULNERABLE PLACES,
DOING RESEARCH, AND LEAVING
WITHOUT ANY INVESTMENT WITHIN
THE COMMUNITY.
OFTENTIMES THOSE COMMUNITIES
THAT WE'RE GOING INTO OR THAT
THERE'S A NEED, THERE'S ALSO
INSTITUTIONS THERE THAT PEOPLE
REALLY RESPECT AND TRUST.
SO BACK TO YOUR T INITIATIVE,
AGAIN, I REALLY WANT US TO BE
CAREFUL THAT WE DO INVEST, DO
SPEND THE RIGHT AMOUNT OF TIME
AND COMMITMENT.
>> WELL, YOU KNOW, YOU DON'T
WALK INTO A PLACE LIKE PINE
RIDGE AND SAY WE'RE HERE FOR YOU
BUT ONLY IF YOU'RE AT RISK FOR
CANCER.
YOU KNOW, YOU HAVE TO BE THERE
FOR THEM.
AND WHATEVER THEY NEED AND THEIR
HEALTH.
NO, YOU PROBABLY CAN'T DO
ABSOLUTELY EVERYTHING, BUT YOU
NEED TO LISTEN.
WHEN THEY TELL YOU, OUR BIGGEST
PROBLEM IS THIS, LIKE I SAID, I
WOULD IMAGINE THAT WITH SCOPE,
DEPTH, COMMITMENT OF NIH WE'LL
HAVE SOMETHING TO HAPPEN.
IT'S NOT HELICOPTER, BUT IT'S
ALSO THE SCOPE OF EVERYTHING
THAT A COMMUNITY IS LOOKING FOR.
>> WONDERFUL.
THANK YOU AGAIN.
IT WAS SO GREAT TO HAVE YOU
HERE.
REALLY APPRECIATE IT.
I'M SO HAPPY THAT MY EXTENDED
COMMUNITY CAN GET TO MEET YOU UP
CLOSE AND PERSONAL LIKE THIS.
>> I'M SORRY IT TOOK TILL THE
END OF THE YEAR.
THANK YOU.
>> WE'RE GOING TO TAKE A BREAK
NOW AND RECONVENE AT 1 P.M. FOR
LUNCH.
WE'RE GOING TO RESUME THIS
NEXT PART OF THE OPEN SESSION OF
COUNCIL.
SO IF EVERYBODY CAN GET READY
HERE.
SO, I'M GOING TO BEGIN BY MY
PROFUSE APOLOGIES TO SHARON
SMITH TERRY WHO WE REALIZED JUST
JOINED FORMALLY AS A COUNCIL
MEMBER, PHOTO AND DESCRIPTION
DID NOT GET ON OUR SLIDE WITH
NEW COUNCIL MEMBERS.
THANK YOU SO MUCH FOR JOINING
US, CONTRIBUTING TO OUR COUNCIL.
WE WILL FORMALLY INTRODUCE YOU
WITH A BEAUTIFUL PICTURE AND
BIO, AT OUR NEXT COUNCIL
MEETING, ALONG WITH MELISSA
SPENCER, WHO IS JUST ABOUT ON
BOARD.
I'M SORRY WE WEREN'T QUITE
CURRENT WITH THAT.
THANK YOU FOR BEING HERE.
YEAH, GREAT.
OKAY.
THIS NEXT SESSION AS I THINK
YOU'RE ALL AWARE WILL FOCUS ON
COMMUNITY ENGAGEMENT AND OUR
MODERATOR IS GOING TO BE DR.
ROBERT WALKER, I WANTED TO TELL
YOU A LITTLE BIT MORE ABOUT
ROBERT, FOR THOSE THAT DON'T
KNOW HIM WELL.
SO, HE IS THE CHIEF DIVERSITY
OFFICER FOR NIAMS, A ROLE THAT
HE IS JUST DOING A FABULOUS JOB
IN, WE'RE SO LUCKY TO HAVE HIM
WORKING AND SUPPORTING NIAMS IN
THAT WAY.
SO, DR. WALKER PROVIDES EXPERT
LEASHEDSHIP AND DIRECTION FOR
NIAMS IN THE AREAS OF SCIENTIFIC
DIVERSITY, HEALTH EQUITY,
DISPARITIES RESEARCH.
AND AS OUR CHIEF DIVERSITY
OFFICER HE LEADS THE DEVELOPMENT
AND IMPLEMENTATION OF RESEARCH
CAPACITY BUILDING, TRAINING,
CAREER DEVELOPMENT PROGRAMS TO
SUPPORT THE SCIENTIFIC MISSION
OF NIAMS AND ENHANCED SCIENTIFIC
DIVERSITY.
DR. WALKER SERVED AS DIRECTOR OF
OFFICE FOR SCIENTIFIC
OPERATIONS, AND TRAINING
DIRECTOR IN THE NIAMS --
[AUDIO DISTORTION]
INTRAMURAL RESEARCH PROGRAM FOR
OVER A DECADE.
LONG HISTORY WITH NIAMS.
AND PRIOR TO JOINING NIAMS DR.
WALKER COMPLETED TWO
FELLOWSHIPS, AT THE NATIONAL
INSTITUTES OF ALLERGY AND
INFECTIONS DISEASES,
IMMUNODEFICIENCY VIRUS HIV 1 AND
IN TECHNOLOGY TRANSFER TO
LEVERAGE INNOVATION AT INTERFACE
OF LAW, BUSINESS, BIOMEDICAL
RESEARCH IN THE NIAID OFFICE.
PRIOR TO THAT RECEIVED HIS
BACHELOR OF SCIENCE DEGREE IN
BIOLOGY, A Ph.D. AT MEHARRY.
THANK UP FOR MODERATING THE NEXT
SESSION.
>> THANK YOU TO ALL OF OUR NIAMS
COUNCIL MEMBERS AND STAFF
PRESENT.
IN PERSON AND VIA ZOOM.
SO, FOR THE 90 MINUTES WE'RE
GOING TO BE EXCITED TO EXCUSE
COMMUNITY ENGAGEMENT, OKAY?
AND WHAT A BEAUTIFUL PRELUDE WE
HAD WITH OUR NIH DIRECTOR, DR.
MONICA BERTAGNOLLI, ADDRESSING
SOME HIGHLIGHTS THAT'S HAPPENING
NIH-WIDE.
WE DO HAVE A WONDERFUL TREAT
WITH THREE EXPERTS COMING TO
PRESENT ON COMMUNITY ENGAGEMENT
THIS AFTERNOON, AND SO I WANTED
TO HIGHLIGHT OUR COMMITMENT,
NIAMS' OF' COMMITMENT TO
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY, AGAIN, OUR
COMMITMENT REALLY ALIGNS WITH
THE NIH COSWD VISION AROUND
DEIA, TODAY'S TOPIC WILL FOCUS
ON OUR ATTENTION TO HEALTH
DISPARITIES RESEARCH EFFORTS
IDENTIFYING NOVEL WAYS TO MOVE
TO HEALTH EQUITY.
AS YOU CAN RECALL, AT OUR
PREVIOUS COUNCIL IN MAY, WE HAD
SOME FANTASTIC PRESENTERS THAT
WERE CENTERED AROUND PATIENT
ENGAGEMENT AND ADVOCACY THAT WAS
LED BY DR. BOB CARTER, OUR
DEPUTY DIRECTOR.
I WANT TO HIGHLIGHT A FEW POINTS
INTERESTING FROM THOSE
CONVERSATIONS.
AND, AGAIN, SOME POINTS WERE
HIGHLIGHTED THIS MORNING TALKING
ABOUT INTERSECTION OF PATIENT
ENGAGEMENT, BEST PRACTICES ON
INCORPORATING ENGAGEMENT, AND
ALSO PATIENT ENGAGEMENT
IMPLEMENTATION STRATEGIES TO
INCLUDE PERSPECTIVE IN RESEARCH,
PRIORITIZATION, STUDY DESIGN,
AND IMPLEMENTATION DATA ANALYSIS
AND DISSEMINATION OF RESULTS.
SO TODAY WE HAVE AGAIN THREE
GURUS IN THE FIELD.
DR. SHANNON ZENK, DR. MONICA
WEBB HOOPER, DR. KARRIEM WATSON.
WHAT WE'RE GOING TO DO, THE
FORMAT IS SIMPLE.
I'M GOING TO INTRODUCE SPEAKERS
VIA BIOS, SPEAKERS WILL COME
RESPECTIVELY ONE AFTER EACH
OTHER, AFTER DR. ZENK PRESENTS
AS OUR FIRST PRESENT WE'LL FIELD
ONE OR TWO QUESTIONS.
WE'LL ASK DR. MONICA WEBB HOOPER
TO COME TO GIVE A PRESENTATION.
AGAIN, WE'LL ASK ONE OR TWO
QUESTIONS POSED BY COUNSEL
MEMBERS.
AFTER KARRIEM, WE'LL HAVE A Q&A
SESSION WHICH WILL ENCOMPASS OUR
IDEAS.
DR. ZENK IS THE DIRECTOR
NATIONAL INSTITUTE OF NURSING
RESEARCH.
SHE LED THE DEVELOPMENT OF THE
INSTITUTE'S NEW STRATEGIC PLAN
FOCUSING ON SOCIAL DETERMINANTS
OF HEALTH AND HEALTH EQUITY,
INITIATED PROGRAMS BOTH IN NINR
AND NIH TO ADVOCATE SCIENTIFIC
DISCOVERY IN THESE AREAS.
SHE IS AN ADVOCATE FOR
LEADERSHIP OF NURSES AND NURSE
SCIENTISTS AS KEY TO ADVANCING
HEALTH EQUITY, SINCE JOINING
NINR IN 2020 SHE LAUNCHED
INSTITUTE'S FIRST STRATEGIC
IMPERATIVE ON FIREARM INJURY
PREVENTION, GUIDED THE
INSTITUTE'S RESEARCH PRIORITIES
ON MATERNAL HEALTH.
COVID ERA FOOD AND HOUSING
POLICIES AND PROGRAMS, AND
INTEGRATION OF SOCIAL
INTERVENTIONS WITH CLINICAL
CARE.
SHE HAS TAKEN A LEADERSHIP ROLE
AS CO-CHAIR OF SEVERAL NIH-WIDE
COMMITTEES INCLUDING SOCIAL
DETERMINANTS OF HEALTH RESEARCH
COORDINATING COMMITTEE,
COMMUNITY PARTNERSHIP TO ADVANCE
SCIENCE FOR SOCIETY, KNOWN AS
COMPASS, IMPLEMENTING MATERNAL
HEALTH AND PREGNANCY OUTCOMES
VISION FOR EVERYONE, KNOWN AS
IMPROVE INITIATIVE, AND CLIMATE
CHANGE AND HEALTH INITIATIVES,
REPRESENTS NIH ON HHS AND
GOVERNMENT WIDE GROUPS, HHS
PRIMARY HEALTH CARE ADVISORY
GROUP, SOCIAL DETERMINANTS OF
HEALTH INTERPOLICY COMMITTEE.
DR. ZENK'S RESEARCH CENTERS ON
ENVIRONMENTAL JUSTICE AND
HEALTH, WORK TAKES A CONTEXTUAL
APPROACH TO UNDERSTANDING THE
ROLE OF THE ENVIRONMENT IN
HEALTH BEHAVIORS AND OUTCOMES.
WITH THE GOAL OF PRODUCING
EVIDENCE TO ELIMINATE RACIAL,
ETHNIC, SOCIOECONOMIC HEALTH
DISPARITIES.
TO BETTER UNDERSTAND HOW THE
ENVIRONMENT AFFECTS HEALTH, DR.
ZENK AND HER COLLEAGUES ADVANCE
USE OF CONCEPT FROM BEHAVIORAL
GEOGRAPHY ACTIVITY SPACE WHICH
EXPANDED ENVIRONMENTAL EXPOSURE
MEASUREMENTS BEYOND WHERE PEOPLE
LIVE TO INCLUDED PLACES PEOPLE
CONDUCT THEIR ACTIVITIES AND
SPEND THEIR TIME.
THEY ALSO EVALUATED POLICIES AND
INVESTMENTS THAT AFFECT
NEIGHBORHOOD ENVIRONMENTS FOR
IMPACTS ON HEALTH AND HEALTH
EQUITIES.
PRIOR TO JOINING NINR SHE HAD A
14-YEAR CAREER AS FACULTY MEMBER
AT UNIVERSITY OF ILLINOIS AT
CHICAGO OF NURSING AND INSTITUTE
FOR HEALTH RESEARCH AND POLICY.
SHE SPENT TIME AS VISITING
SCHOLAR IN RWANDA AND AUSTRALIA.
SHE EARNED A BACHELOR'S IN
NURSING, MAGNA CUM LAUDE,
MASTER'S DEGREE IN PUBLIC
HEALTH, NURSING AND COMMUNITY
HEALTH SCIENCES FROM UNIVERSITY
OF ILLINOIS CHICAGO, UIC, AND
DOCTORATE IN HEALTH BEHAVIOR AND
HEALTH EDUCATION FROM UNIVERSITY
OF MICHIGAN ANN ARBOR, AN
ELECTED MEMBER OF THE NATIONAL
ACADEMY OF MEDICINE, FELLOW OF
THE AMERICAN ACADEMY OF NURSING,
WAS RECENTLY INDUCTED INTO THE
INTERNATIONAL NURSE RESEARCHER
HALL OF FAME IN 2019.
NEXT PRESENTER DR. MONICA WEBB
HOOPER IS DEPUTY DIRECTOR OF THE
NATIONAL INSTITUTE ON MINORITY
HEALTH AND HEALTH DISPARATES,
NIMHD, AT THE NIH.
A LICENSED HEALTH PSYCHOLOGIST
BEHAVIORAL SCIENTIST WITH 20
YEARS OF HISTORY WORKING EVERY
DAY TO IMPROVE THE HEALTH AND
QUALITY OF LIFE AMONG
UNDERSERVED COMMUNITIES.
HER COLLABORATIVE COMMUNITY
ENGAGED SCIENCE SEEKS TO PREVENT
OR REDUCE IMPACT OF CHRONIC
ILLNESS ON POPULATIONS WITH
HEALTH DISPARITIES.
THROUGH HER WORK DR. WEBB HOOPER
HAS DEVELOPED AND DIRECTLY
IMPROVED THE HEALTH OF THOUSANDS
OF RACIAL AND ETHNIC MINORITY
GROUP ADULTS AND FAMILIES,
DEVELOPING AND DELIVERING
SUCCESSFUL TREATMENT FOR OVER
COMING ADDICTIONS SUCH AS
TOBACCO SMOKES, WEIGHT
MANAGEMENT GOALS, REDUCING
STRESS, MENTAL HEALTH
CONVENTIONER AND IMPROVING
PARTNER AND FAMILY
RELATIONSHIPS.
AS DEPUTY DIRECTOR OF NIMHD, DR.
WEB HEARTERS IN -- PARTNERS WIH
THE DIRECTOR ON LEADERSHIP OF
THE INSTITUTE.
AND IS COMMITTED TO TRAINING OF
NEXT CADRE OF SCIENTISTS
INVESTED IN IMPROVING POPULATION
HEALTH, COMMUNITY HEALTH, GLOBAL
HEALTH.
SHE IS DEDICATED TO SIGN ACTIVE
SCIENTIFIC
STUDY OF MINORITY HEALTH AND HAS
PUBLISHED OVER 100 ARTICLES AND
BOOK CHAPTERS, FEATURED IN
NUMEROUS EDITORIALS THROUGHOUT
HER CAREER.
THE MANTRA OF HER WORK IS
SCIENCE AND PARTNERSHIPS THAT
BENEFIT AND SERVE COMMUNITIES.
ACADEMIC INFLUENCE HAS
IDENTIFIED HER AS ONE OF THE 25
INFLUENTIAL BLACK PSYCHOLOGISTS
FROM THE LAST 30 YEARS.
SHE IS ONE OF 50 MOST CITED AND
SEARCHED BACK ANTHROPOLOGISTS,
AGAIN OVER 30 YEARS.
FINAL SPEAKER IS DR. KARRIEM
WATSON, CHIEF ENGAGEMENT OFFICER
FOR NATIONAL INSTITUTES OF
HEALTH, "ALL OF US" PROGRAM.
HE LEADS THE "ALL OF US"
RESEARCH PROGRAM'S EFFORTS TO
FOSTER RELATIONSHIP WITH
PARTICIPANTS, COMMUNITIES,
RESEARCHERS, PROVIDES ACROSS THE
UNITED STATES AND TERRITORIES
THROUGH EQUITABLE ENGAGEMENT TO
HELP BUILD ONE OF THE LARGEST
AND MOST HEALTH DATASETS OF ITS
KIND TO ADVANCE PRECISION
MEDICINE RESEARCH.
PRIOR TO JOINING THE NIH, DR.
WATSON SPENT OVER 15 YEARS
CONDUCTING CANCER DISPARITIES
RESEARCH.
HE COMPLETED HIS POSTDOC
TRAINING IN CANCER CENTER
LEADERSHIP UNDER DR. ROBERT WYNN
AT THE UNIVERSITY OF ILLINOIS AT
CHICAGO CANCER CENTER, WHERE HE
WON'T TO BECOME AN INDEPENDENT
FUNDED RESEARCHER WITH FUNDING
FROM THE CANCER INSTITUTE,
MINORITY HEALTH AND HEALTH
DISPARITIES, NATIONAL INSTITUTE
ON HEART BLOOD AND LUNG.
DR. WATSON'S WORK SPANS
COMMUNITY ENGAGED RESEARCH,
COMMUNITY-BASED PARTICIPATORY
RESEARCH, IMPLEMENTATION AND
DISSEMINATION SCIENCE INCLUDING
ENGAGING COMMUNITY MEMBERS AS
CITIZEN SCIENTISTS, TO IMPROVE
DIVERSITY, EQUITY, INCLUSION IN
CLINICAL TRIALS.
IN ADDITION, TO HIS RESEARCH,
DR. WATSON ALSO SERVED AS
HEALTHCARE ADMINISTRATOR
OVERSEEING COMMUNITY BASED
RESEARCH AND DIRECTOR FOR
FEDERALLY QUALIFIED HEALTH
CENTERS, HAS BEEN RECOGNIZED BY
MANY ORGANIZATIONS FOR HIS
COMMITMENT TO TRAINING AND
EDUCATION, INCLUDING BEING
AWARDED INNOVATOR IN STEM
AWARDED BY THE CHICAGO URBAN
LEAGUE.
SO MY LAST SLIDE IS ONE OF MY
FAVORITE SLIDES.
JUST SHOWING A MARATHON APPROACH
TO DEIA THAT WE'RE TAKING IN
NIAMS.
TODAY THE JOB OF ALL OF US,
SORRY, KARRIEM, THAT WAS AD
LIBBED, OUR JOB IS GIVE
CONVERSATION ON HOW IMPORTANT
OUTREACH IS, WHAT ARE WE M
ISSING, HOW ARE PROGRAMS USING
BUDGET TO DO COMMUNITY
ENGAGEMENT, CDPR RESEARCH.
FINAL OUTCOME WE'RE WORKING
TOWARDS HEALTH EQUITY.
SO DR. ZENK, IF YOU WOULD.
>> GOOD AFTERNOON TO EVERYONE.
IT'S A PLEASURE TO BE HERE.
THANK YOU FOR THAT REALLY WARM
GENEROUS INTRODUCTION, AND THIS
IS A GREAT WAY TO SPEND AN
AFTERNOON.
I'M DELIGHTED TO BE HERE, AND
ENGAGE IN CONVERSATION WITH YOU.
SO, SPECIFICALLY, I'M HERE TO
SHARE MY PERSPECTIVE ON
COMMUNITY ENGAGED RESEARCH AS AN
INSTITUTE DIRECTOR HERE AT THE
NIH.
I THINK THIS IS A TIMELY AND
VERY IMPORTANT CONVERSATION
ABOUT HOW TO DO THIS WORK MORE
EFFECTIVELY.
YOU KNOW, AND THE REASON IS
BECAUSE COMMUNITY ENGAGEMENT IS
A PRIORITY FOR US AT NINR AND
REALLY IS IMPORTANT FOR ME
PERSONALLY AS WELL.
I'M GOING TO SHARE THOUGHTS
ABOUT COMMUNITY ENGAGEMENT AND
MY ROLE AS I SAID AS A DIRECTOR
HERE AT NIH AND SHARE A FEW
THOUGHTS ABOUT HOW MY EXPERIENCE
MIGHT BE USEFUL FOR ALL OF YOU.
MAYBE.
OKAY, NO, I AM.
SO, YOU MAY BE FAMILIAR WITH
THIS PROGRESSION, THE SCHEMA,
REPRESENTING A CONTINUUM OF
COMMUNITY ENGAGEMENT.
ON THE LEFT WE HAVE OUTREACH AND
CONSULTATION.
AS WE PROGRESS ACROSS THE
CONTINUUM AND THINK ABOUT
RESEARCH, COMMUNITY PARTNERS
MOVE FROM BEING THE OBJECTS OF
RESEARCH TO ACTIVE AGENTS, TO
DRIVERS OF THE RESEARCH.
CRITICAL QUESTIONS, WHERE ARE
YOU IN TERMS OF YOUR LEVEL OF
ENGAGEMENT, WHAT DO YOU WANT TO
BE, HOW DO YOU GET THERE?
IT MAY SEEM EASY TO SAY WE
SHOULD COLLABORATE OR SHARE
LEADERSHIP ON ALL OF OUR
PROJECTS, THAT'S NOT ALWAYS THE
RIGHT ANSWER.
THERE ARE, YOU KNOW, REALLY A
LOT OF CONSIDERATIONS IN THESE
DECISIONS, AND THESE ARE REALLY
DECEPTIVELY DIFFICULT QUESTIONS
WITH IMPLICATIONS AND POTENTIAL
UNINTENDED CONSEQUENCES WE NEED
TO CONSIDER AND THINK THROUGH.
EVEN WHEN DO YOU DECIDE THAT YOU
WANT TO ENGAGE COMMUNITIES IN
RESEARCH WE DON'T ALWAYS HAVE
GOOD GUIDANCE OR KNOW HOW TO DO
IT WELL.
SO AT NINR FOR A WHILE WE'VE
COME TO UNDERSTAND THE
COMMITMENT TO COMMUNITY
ENGAGEMENT THOUGH CAN'T JUST
EXIST AT THE LEVEL OF INDIVIDUAL
INVESTIGATORS.
IT HAS TO BE INTEGRATED AT THE
ORGANIZATIONAL LEVEL AS WELL.
SO, NINR'S COMMITMENT TO
EXPANDING COMMUNITY ENGAGED
RESEARCH REALLY SHOULDN'T BE
SURPRISING.
PERHAPS BECAUSE A FOCUS ON
PEOPLE AND COMMUNITY ENGAGEMENT
IS REALLY INHERENT TO THE NATURE
OF NURSING WHICH MEANS THAT OUR
COMMUNITY AND OUR CON CON THE T
GROUPS SEE THE VALUE.
THE ACTIVITIES HAPPEN OUTSIDE
HOSPITAL WALLS, HEALTH IS BEST
UNDERSTOOD IN THE CONTEXT OF
PEOPLE'S LIVES AND THEIR LIVING
CONDITIONS, AS WELL AS
SOLUTIONS.
SO NURSING'S HOLISTIC
PERSPECTIVE AND POSITIONING IN
THE HEALTH AND HEALTH CARE
LANDSCAPE IS UNIQUE AND
IMPORTANT, COMBINED WITH OUR
EMPHASIS ON RELATIONSHIPS WITH
INDIVIDUALS, FAMILIES,
COMMUNITIES, NURSING IS BASED ON
THE DEVELOPMENT OF AUTHENTIC
RELATIONSHIPS.
NOW THOSE RELATIONSHIPS HELP US
UNDERSTAND WHAT'S IMPORTANT TO
PEOPLE, THEIR GOALS AND
PRIORITIES, AND THEY HELP US
PARTNER WITH THEM TO IMPROVE
THEIR HEALTH.
BUT ALSO THOSE RELATIONSHIPS CAN
AND SHOULD GUIDE OUR APPROACH TO
RESEARCH.
TODAY I'M GOING TO SHARE HOW
WE'RE INTEGRATING COMMUNITY
ENGAGEMENT INTO OUR WORK AT
NINR, AND A COUPLE THINGS THAT
WE HAVE FOUND TO BE EFFECTIVE IN
THIS WORK SO FAR.
TO SET THE STAGE WE SEE
COMMUNITY ENGAGEMENT AS CENTRAL
TO ACHIEVING OUR MISSION AND
STRATEGIC PRIORITIES.
WE ALSO BELIEVE GENERATING
EVIDENCE NEEDED TO ATTAIN HEALTH
EQUITY AND MORE GENERALLY TO
EFFECTIVELY IDENTIFY APPROACHES
THAT WILL OPTIMIZE OUR NATION'S
HEALTH THAT THIS WILL BE GREATLY
AIDED BY RESEARCH THAT
MEANINGFULLY INVOLVES
COMMUNITIES.
SO WE'VE INTEGRATED AN EMPHASIS
ON COMMUNITY ENGAGED RESEARCH
INTO THE RESEARCH LENSES OR
PERSPECTIVES THAT WE ENCOURAGE
INVESTIGATORS TO USE IN THEIR
RESEARCH FOR PRESSING HEALTH
CHALLENGES AND INFORM PRACTICE
AND POLICY.
FOR EXAMPLE, IN THE HEALTH
EQUITY LENS IN OUR STRATEGIC
PLAN WE ENCOURAGE RESEARCH
PROJECTS THAT ADDRESS A HEALTH
DISPARITY, AND ALSO EMPLOY
EQUITY-CENTERED APPROACH WITH
COMMUNITY ENGAGEMENT AS ONE OF
TWO KEY COMPONENTS.
MEANINGFUL PARTICIPATION OF
COMMUNITIES AND RESEARCH ENSURES
ALL VOICES ARE EQUALLY VALUED.
AND TO ACHIEVE THIS AS
RESEARCHERS WE NEED TO FOSTER
PARTNERSHIPS THAT AMPLIFY THE
VOICES AND INFLUENCE OF AFFECTED
COMMUNITIES AND POPULATIONS, AND
LEVERAGE THEIR STRENGTHS.
WE'VE ALSO MADE SIGNIFICANT
STEPS TO TRANSLATE COMMITMENT TO
COMMUNITY ENGAGEMENT, REFLECTED
IN OUR MISSION, AND STRATEGIC
PLAN, INTO CONCRETE ACTION.
I'M GOING TO WALK THROUGH SOME
OF THOSE.
NEEDLESS TO SAY AS A FUNDING
AGENCY, FUNDING OPPORTUNITIES
ARE ONE OF THE MOST IMPORTANT
WAYS THAT WE AS A RESEARCH
FUNDER CAN PROMOTE COMMUNITY
ENGAGEMENT AND RESEARCH.
THIS IS A QUICK SNAPSHOT OF SOME
MOST RECENT FUNDING
OPPORTUNITIES.
THE OPPORTUNITIES YOU SEE HERE
ARE ALL ONES THAT NINR IS
LEADING, AND EACH EITHER
ENCOURAGES OR REQUIRES COMMUNITY
ENGAGEMENT IN THE RESEARCH.
SO WE'VE APPRECIATED THE
PARTICIPATION AND PARTNERSHIP OF
NIAMS ON SEVERAL OF THESE
INCLUDING RURAL HEALTH NOFO AND
THE TRANSFORMATIVE HEALTH
DISPARITIES NOFO.
NOW, TRANSFORMATIVE HEALTH
DISPARITIES WAS A RE-RELEASE OF
COMMON FUND FUNDING OPPORTUNITY
WITH KEENER FOCUS ON SOCIAL
DETERMINANTS OF HEALTH.
THE NOFO REQUIRED A PLAN TO
DEMONSTRATE HOW COMMUNITIES
WOULD BE MEANINGFULLY ENGAGED
THROUGHOUT ALL PHASES OF THE
RESEARCH PROCESS AND ACROSS THE
LIFE OF THE PROJECT.
SO I'D LIKE TO DRAW YOUR
ATTENTION TO THE BRIDGE
INITIATIVE WHICH I THINK IS AN
APPROACH THAT WILL RESONATE WITH
YOU AT NIAMS.
THE OPPORTUNITY IS FOCUSED ON
LEVERAGING CLINICAL COMMUNITY
PARTNERSHIPS TO DEVELOP AND TEST
INNOVATIVE SYSTEMS AND MODELS OF
CARE.
IN 2023 WE FUNDED FOUR PROJECTS
THROUGH THIS INITIATIVE, FOR
INNOVATIVE COMMUNITY
PARTNERSHIPS TO ADDRESS UNMET
SOCIAL NEEDS IN INDIVIDUALS AND
FAMILIES AND ADVERSE SOCIAL
DETERMINANTS OF HEALTH IN
COMMUNITIES, IN THE CONTEXT OF
HEALTH CARE.
THE FUNDED PROJECTS PROPOSED
BRIDGES AND MANY DIFFERENT
RESPECTS, INCLUDING A PROJECT
FOCUSED ON STRENGTHENING
ABILITIES OF COMMUNITY HEALTH
CENTERS TO ADAPT CHRONIC DISEASE
CARE MANAGEMENT STRATEGIES FOR
AN INDIVIDUAL SOCIAL NEEDS.
INCLUDING BY CONNECTING THEM
WITH COMMUNITY-BASED
ORGANIZATION.
WE'RE LOOKING FORWARD TO FUNDING
MORE PROJECTS BY THE END OF THE
FISCAL YEAR, SO END OF THE
MONTH.
HERE'S A STUDY WHERE FUNDING
UNDER OUR AIM INITIATIVE FOCUSED
ON MATERNAL HEALTH INCLUDING A
STRONG FOCUS ON COMMUNITY
PARTICIPATION.
AND THIS STUDY RESEARCHERS ARE
EVALUATING THE MULTI-LEVEL
EFFECTS OF A CITY-WIDE DOULA
INITIATIVE WITH THE GOAL OF
SERVING AS A REPLICABLE MODEL,
THE PROJECT INCLUDES A
CULMINATING ACTIVITY TO
CO-DESIGN AND EVIDENCE-BASED
STRATEGIC PLAN FOR POLICY
IMPLEMENTATION.
SO AS I MENTIONED WE KNOW THAT
SOME INVESTIGATORS SEE THE VALUE
OF PARTNERING WITH COMMUNITIES
IN THE RESEARCH BUT DON'T KNOW
WHERE TO START OR FEEL LIKE THEY
HAVE THE TRAINING TO DO IT WELL.
SO WE'RE EXPLORING NEW
OPPORTUNITIES FOR TRAINING ON
COMMUNITY PARTNERED RESEARCH.
WE INTEGRATED CONTENT IN
INITIATIVES, THIS SUMMER HOSTED
A THREE-DAY TRAINING ON SOCIAL
DETERMINANTS OF HEALTH, ON
CAMPUS, FOR EARLY AND MID-CAREER
INVESTIGATORS, INCLUDING A
NUMBER OF DISCUSSIONS AND
EXAMPLES OF BEST PRACTICES IN
COMMUNITY ENGAGED RESEARCH.
WE'VE BEGUN THINKING OF WAYS TO
GROW SCIENTIFIC WORKFORCE,
PREPARED TO DO THE SCIENCE, AND
INFRASTRUCTURE FOR COMMUNITY
ENGAGED RESEARCH.
LAST WEEK WE PRESENTED TO THE
NINR COUNCIL A CONCEPT TO BUILD
CAPACITY FOR COMMUNITY PARTNERED
NURSING RESEARCH, PROPOSED TO
SUPPORT DEVELOPMENT OF RESEARCH
CENTERS THAT FOSTER NURSING-LED
PROGRAMS OF COMMUNITY PARTNERED
RESEARCH TO ADVANCE HEALTH
EQUITY.
ALSO TO CAPITALIZE ON EXISTING
COMMUNITY PARTNERSHIPS THAT
ALREADY EXIST IN NURSING
EDUCATION AND SERVICE DELIVERY,
AND ACCELERATE RESEARCH
INFRASTRUCTURE DEVELOPMENT IN
SCHOOLS AND COLLEGES OF NURSING,
INCLUDING THOSE WITH LIMITED
PRIOR NIH FUNDING.
AS WELL AS ENHANCE RESEARCH
CAPACITY, PROVIDE OPPORTUNITIES
FOR INVESTIGATORS TO IMPROVE
KNOWLEDGE AND SKILLS IN
COMMUNITY ENGAGED RESEARCH.
AS PART OF OUR COMMITMENT TO
SUPPORT AND EXPAND COMMUNITY
ENGAGED RESEARCH, WE STARTED
DOWN PATH OF PRIORITIZING IT IN
OUR INTRAMURAL PROGRAM.
SO I WOULD SAY THE UNIQUE
FEATURES OF THE INTRAMURAL
PROGRAM AT NIH PROVIDE A REALLY
EXCELLENT OPPORTUNITY FOR
COMMUNITY ENGAGED RESEARCH.
THE INTRAMURAL PROGRAM ALLOWS
FOR LONG-TERM RELATIONSHIPS AND
RESPONSIVENESS TO COMMUNITY
PRIORITIES, AND HAS BUILT-IN
OPPORTUNITIES FOR TRAINING THE
NEXT GENERATION OF SCIENTISTS
FROM UNDERGRADUATE STUDENTS TO
GRADUATE AND POSTDOCTORAL
FELLOWS TO EARLY CAREER
INVESTIGATORS.
WE'VE ALSO BEGUN OUTREACH TO
LOCAL COMMUNITY ORGANIZATIONS TO
BUILD RELATIONSHIPS AND TO HELP
UNDERSTAND COMMUNITY PRIORITIES
FOR RESEARCH.
SO ONE OF THESE ORANGESES IS
C3CARES IN DC, A NURSE-LED
PROGRAM THAT PROVIDES
PLACE-BASED HEALTH CARE IN TWO
PUBLIC HEALTH -- I'M SORRY
PUBLIC HOUSING LOCATIONS.
SO WE VISITED THEIR PUBLIC
HOUSING LOCATION, MET WITH THEM
AND COMMUNITY PARTNERS, HAD THEM
COME TO NIH TO TALK ABOUT THEIR
PRIORITIES FOR RESEARCH AND HOW
THEY ENVISION COLLABORATING WITH
INVESTIGATORS IN OUR INTRAMURAL
PROGRAM.
WE'RE ALSO HIRING NEW
INVESTIGATORS IN OUR INTRAMURAL
PROGRAM WITH EXPERTISE IN
COMMUNITY ENGAGED RESEARCH.
WE'VE BEGUN A PARTNERSHIP WITH
COMMUNITY AND ACADEMIC
ORGANIZATIONS IN SOUTHEAST
VIRGINIA TO ADDRESS LOCAL
COMMUNITY HEALTH NEEDS AND
PRIORITIES THROUGH COMMUNITY
ENGAGED RESEARCH AND TRAINING.
WE'VE STARTED ALSO TO PROFILE
COMMUNITY ENGAGED RESEARCH IN
OUR ACTIVITIES.
WE'VE DONE THIS IN DIRECTOR
LECTURE SERIES AND ADVISORY
COUNCIL, MAKING TIME TO INCLUDE
COMMUNITY PERSPECTIVE.
LAST WEEK HAD AN NINR
INVESTIGATOR WHO CAME TO TALK TO
COUNCIL ABOUT HER STUDY RELATED
TO FOOD INSECURITY.
HER PARTNER UNFORTUNATELY HAD A
LAST-MINUTE CONFLICT BUT DR.
MELISSA HORNING FROM UNIVERSITY
OF MINNESOTA SHARED RESEARCH ON
A MOBILE MARKET PROGRAM THAT
BRINGS HEALTHY FOOD OPTIONS TO
NEIGHBORHOODS WITHOUT THESE
ALREADY.
OUR ATTENTION WITH THESE
CONVERSATIONS THOUGH IS TO
ENSURE THAT WE TOO ARE EMPLOYING
AND ROLE MODELING BEST PRACTICES
AND COMMUNITY ENGAGEMENT BY
INVOLVING PARTNERS IN ALL STAGES
OF THE RESEARCH PROCESS FROM
PLANNING TO DISSEMINATION.
NOW, OF COURSE, NINR IS NOT
ALONE IN OUR COMMITMENT TO
COMMUNITY ENGAGED RESEARCH.
I'M PROUD TO SAY FAR FROM IT.
WITH OTHER MEMBERS OF THIS PANEL
SHARING MANY OTHER WAYS NIH IS
SUPPORTING COMMUNITY ENGAGED
RESEARCH, SO I'M EXCITED FOR YOU
TO HEAR ABOUT THEIR EXAMPLES.
HERE ARE SOME INITIATIVES NINR
IS INVOLVED WITH OR IS LEADING
COMPONENTS WITH STRONG COMMUNITY
ENGAGEMENT.
NIAMS IS INVOLVED OR LEADING
THESE AS WELL AS OTHERS.
SO ONE THAT IS IMPORTANT TO
HIGHLIGHT I THINK IS THE
ComPASS PROGRAM, THIS PROGRAM
IS INNOVATIVE FOR NIH, IT'S A
10-YEAR COMMITMENT.
IT IS DIRECTLY FUNDING COMMUNITY
ORGANIZATIONS TO LEAD RESEARCH.
IT ENCOURAGES THOSE
ORGANIZATIONS TO PARTNER WITH
RESEARCHERS AND RELEVANT SECTORS
TO DESIGN AND CARRY OUT
STRUCTURAL INTERVENTIONS TO
IMPROVE HEALTH AND ADDRESS
HEALTH DISPARITIES IN THEIR
COMMUNITIES.
COMPASS IS HELPING TO GIVE THESE
COMMUNITY-BASED ORGANIZATIONS
THE OPPORTUNITY TO DESIGN UNIQUE
INTERVENTIONS THAT PINPOINT
SOCIAL DETERMINANTS OF HEALTH
THAT ARE AFFECTING THEIR
COMMUNITIES.
SO, SO FAR COMPASS FUNDED 25
COMMUNITY ORGANIZATIONS ACROSS
THE COUNTRY AND WE HOPE THAT
WHAT WE LEARN FROM COMPASS WILL
INFORM A MODEL OF COMMUNITY-LED
INTERVENTION RESEARCH.
NOW, I WANT TO BE CLEAR,
COMMUNITY ENGAGEMENT IS NOT NEW.
THERE ARE TWO ENGAGEMENT EXPERTS
TALKING WITH US HERE TODAY.
I ADMIRE EACH OF THEM GREATLY,
HAVE LEARNED SO MUCH FROM THEM.
SO IT'S JUST QUITE AN HONOR TO
BE ON THIS PANEL WITH THEM.
I'M GOING TO LET THEM TALK ABOUT
THE MOST SUCCESSFUL STRATEGIES
AND APPROACHES.
THERE ARE INSTITUTES LIKE NIMHD
WHO HAD A SIGNIFICANT INVESTMENT
IN THIS AREA OF RESEARCH OVER A
NUMBER OF YEARS.
COMMUNITY ENGAGED RESEARCH ISN'T
NEW TO NINR EITHER BUT WE'RE AS
AN INSTITUTE HAVE DECIDED
COLLECTIVELY THAT AN INCREASED
EMPHASIS ON COMMUNITY ENGAGEMENT
IS REALLY ABSOLUTELY CRITICAL TO
ADVANCING OUR MISSION AND
ACHIEVING OUR GOALS.
IF WE WANT TO GENERATE EVIDENCE
THAT IDENTIFIES WHAT WORKS AND
IMPROVING HEALTH AND ADDRESSING
HEALTH DISPARITIES, AND RESEARCH
THAT DETERMINES HOW TO IMPLEMENT
THESE DISCOVERIES IN PRACTICE
AND POLICY SETTINGS WE NEED TO
ACTIVELY INVOLVE COMMUNITIES.
WE'VE LEARNED OUR EFFORTS AT
NINR MUST BE DELIBERATE AND HAVE
BEGUN THE WORK AS I'VE TRIED TO
HIGHLIGHT RESTRUCTURING OUR
ACTIVITIES WITH THIS IN MIND.
WHICH I HOPE AGAIN MAY BE
INFORMATIVE FOR DIRECTIONS
YOU'RE INTERESTED IN GOING.
MUCH OF WHAT I'VE DISCUSSED
THOUGH IS RELATED TO MY ROLE AS
DIRECTOR AT NINR, BUT I'M ALSO A
RESEARCHER WHO STRONGLY BELIEVES
THAT DEEP AND MEANINGFUL
COMMUNITY ENGAGEMENT IS
ABSOLUTELY ESSENTIAL TO
RESEARCH.
I FEEL REALLY FORTUNATE TO HAVE
INITIALLY LEARNED HOW TO DO
RESEARCH IN MY Ph.D. PROGRAM,
FROM A COMMUNITY-BASED
PARTICIPATORY RESEARCH
PERSPECTIVE AND CAN SAY THE BEST
SIGN ACTIVE INVITES AND IDEAS OF
MY CAREER ORIGINATED FROM
CONVERSATIONS THAT I HAD WITH
COMMUNITIES.
I WANT TO THANK YOU FOR INVITING
ME TO BE PART OF THE
CONVERSATION.
SOME BENEFITS OF ANY COMMUNITY
ENGAGED PROJECT ARE THE SHARING
OF KNOWLEDGE AND RESOURCES,
MUTUAL LEARNING.
WE CAN EXTEND THAT THINKING TO
OUR WORK HERE AT NIH AND AS A
BROADER COMMUNITY OF SCIENTISTS
BY CONTINUING TO TALK ABOUT WHAT
WORKS, WHAT DOESN'T, AND HOW WE
CAN WORK TOGETHER TO MAXIMIZE
OUR RESULTS.
SO I REALLY APPRECIATE NIAMS
HOSTING THIS SESSION AND LOOK
FORWARD TO HEARING FROM MY
COLLEAGUES.
SO THANK YOU.
>> ROBERT, ARE WE HOLDING
QUESTIONS UNTIL AFTER THE THREE
OF THEM?
THAT WAS THE QUESTION OVER HERE.
>> YES.
IT WILL BE GREAT JUST TO
ENTERTAIN ONE OR TWO QUESTIONS
IN BETWEEN, THE SPEAKERS, IF
THERE ARE ANY ON THE FLOOR FROM
OUR COUNCIL MEMBERS FOR DR.
ZENK.
OKAY.
SEEING THERE ISN'T ANY ... NO?
>> I DO HAVE A QUESTION ABOUT
COMPASS.
WHEN IT COMES TO SUBMITTING FOR
THOSE COMMUNITY STANDPOINT WHO
ARE THE SORT OF CANDIDATES OR
FOLKS WHO SHOULD BE SUBMITTING,
ARE THEY PEOPLE BASED WITHIN A
COMMUNITY, SCIENTIFIC
RESEARCHERS?
WHO SHOULD BE THE PERSONS
SUBMITTING FOR THESE KIND OF
THINGS?
>> YEAH, SO ONE OF THE UNIQUE
FEATURES OF COMPASS, THE
APPLICATIONS CAME FROM COMMUNITY
ORGANIZATIONS, OFTEN RESEARCHES
IN ACADEMIC SETTINGS IDENTIFY
COMMUNITY PARTNERS BUT
APPLICATIONS COME FROM THE
UNIVERSITY.
THE IDEAS ORIGINATE WITH
COMMUNITY ORGANIZATIONS, THEY
ARE RECEIVING THE MONEY AND THEY
ARE IDENTIFYING THEIR RESEARCH
PARTNERS.
>> IS IT POSSIBLE -- MAYBE NOT.
I'M GOING TO BRING IT UP.
CARE FOR HEALTH WE HEARD
EARLIER, COULD THIS BE A
PARTNERSHIP WITH THEM WHEN THEY
ARE REACHING OUT TO THE
COMMUNITY AND THEY HAVE A
PROGRAM TO ALIGN WITH CARE FOR
HEALTH, WOULD THIS BE A
COLLABORATION A GRANT COULD BE
APPLIED FOR?
>> I CERTAINLY HOPE SO.
I THINK AT NIH WE NEED TO ENSURE
THERE'S CONNECTIONS ACROSS ALL
OF THESE PROGRAMS, AND THAT THE
NETWORKS THAT ARE BEING
DEVELOPED ARE EXPANDED AND
LEVERAGED AS WE DEVELOP NEW
INITIATIVES.
SO ABSOLUTELY.
>> GREAT, THANK YOU.
>> TEO?
>> THANK YOU, DR. ZENK.
VERY EXCITING PROJECTS AND
INITIATIVES.
I WAS WONDERING WHETHER YOU HAVE
FOR EACH INDIVIDUAL INITIATIVE
OR OVERALL EFFORTS OF THE
INSTITUTE METRICS OF SUCCESS
BECAUSE THOSE WOULD BE VERY
HELPFUL FOR MANY OTHER
ORGANIZATION ALSO WHO ARE
TACKLING SOME OF THESE CHANCE
PERHAPS ON A SMALLER SCALE,
WOULD LOVE TO HEAR YOUR THOUGHTS
ON THAT.
THANK YOU.
>> I THINK THAT'S REALLY
IMPORTANT.
I GUESS GIVEN THAT THIS SESSION
IS FRAMED IN TERMS OF DEIA I
THINK ONE OF OUR GOALS WHICH I
THINK IS SHARED BY NIAMS AND
REALLY EVERY OTHER ASPECT PART
OF NIH TO INCREASE INCLUSION IN
OUR RESEARCH.
IT'S HARD TO DISENTANGLE WHAT'S
LEADING TO WHAT BUT AT NINR
WE'RE PROUD, WE'VE INCREASED OUR
INCLUSION OF AFRICAN AMERICAN
PARTICIPANTS FROM 20% TO 30%
OVER A VERY SHORT PERIOD OF
TIME, THAT'S A BENEFIT OF THIS.
I SEE THAT AS PART OF IT BUT THE
GOALS AND WHAT WE HOPE TO
ACHIEVE WITH COMMUNITY ENGAGED
APPROACH I SEE AS BROADER AS
WELL.
WE'LL MOVE ON WITH DR. MONICA
WEBB HOOPER.
>> IT'S ALWAYS A DELIGHT TO BE
HERE, FOLLOWING SHARON SO THANK
YOU DR. CRISWELL AND DR. WALKER
FOR THE OPPORTUNITY TO BE HERE
TO SHARE.
I WANT TO ACKNOWLEDGE THE
ONGOING WORK AND THE ENGAGEMENT
IN THIS TOPIC OVERALL.
AND MY PERSPECTIVE TODAY WILL
REALLY TAKE TWO FORMS.
ONE IS FROM MY EXPERIENCE AS
INVESTIGATOR, WHAT I'VE LEARNED
OVER TIME, AND THEN IN THE
TRANSITION I MADE TO NIH WHICH
IS MARCH OF 2020, WE SAW REAL
RESURGESSENS, AND NIH AND NIHMD
HAVE A LONG HISTORY OF COMMUNITY
ENGAGED RESEARCH BUT IN 2020
WITH INITIATIVES TAKING PLACE
BECAUSE OF THE DISPARITIES
OBSERVED IN COVID-19 WE SAW THIS
RESURGENCE AND NEW EFFORT TO
ENGAGE IN THIS SPACE IN
MEANINGFUL WAYS.
I'LL BE TALKING ABOUT ONE OF MY
FIRST PROJECTS SINCE I JOINED
NIH.
I'LL START WITH A DEFINITION,
IMPORTANT WE'RE ON THE SAME PAGE
ABOUT WHAT WE'RE SPEAKING ABOUT.
WHEN WE TALK ABOUT COMMUNITY
EARN GAUGE.
ENGAGEMENT IT'S DISTINCT FROM
COMMUNITY ENGAGED RESEARCH.
IT COULD BE USED OUTSIDE A
RESEARCH CONTEXT.
THINK ABOUT A HEALTH SYSTEM WITH
A PATIENT ADVOCACY BOARD, THAT'S
ONE WAY OF COMMUNITY ENGAGEMENT
AND MAY OR MAY NOT BE TIED TO A
PARTICULAR RESEARCH PROJECT.
IN THE CONTEXT OF RESEARCH WE'RE
TALKING ABOUT EFFORTS TO SUPPORT
PARTNERSHIPS BETWEEN ACADEMIC
PEOPLE, BETWEEN COMMUNITY
PEOPLE, TO DEVELOP SUCCESSFUL
STRATEGIES TO ADVANCE PARTICULAR
AREAS WITH THE OVERARCHING GOAL
OF HEALTH EQUITY, WHICH MEANS
SOCIAL JUSTICE AND FAIRNESS.
IT INVOLVES STRATEGIES TO
ORGANIZE INDIVIDUALS, TO ACT
COLLECTIVELY, WHILE MAKING SURE
THAT COMMUNITY VOICES ARE HEARD
AND PRIORITIZED.
IN CONTRAST COMMUNITY ENGAGED
RESEARCH FOR EFFECTIVE
ENGAGEMENT WITH COMMUNITIES WHO
MIGHT BE UNDERSERVED OR
OTHERWISE INVOLVES DEVELOPMENT
AND ENGAGEMENT OF EQUITABLE
PARTNERSHIPS, MULTI-SECTOR
COLLABORATIONS, IT REQUIRES
REALLY SPECIFIC SKILLS AND
RESOURCES TO BE ABLE TO DO THIS
WELL.
COMMUNITY ENGAGED RESEARCH
SHOULD BE CONDUCTING USING
RIGOROUS METHODOLOGICAL
APPROACHES.
ONE OF THE MYTHS IS THAT
COMMUNITY ENGAGED IS NOT
SCIENCE, LET'S TALK TO COMOONT
MEMBERS OF THE THIS IS SCIENCE
AND COULD BE USED ACROSS
DISCIPLINES, REALLY CRITICAL TE
WORK IS RIGOROUS, ROBUST AND CAN
BE REPLICATED.
WE'RE EXPECTING IN THIS CASE
THAT WHEN YOU THINK ABOUT WHAT
DR. ZENK PRESENTED IN TERMS OF
THAT CONTINUUM OF COMMUNITY
ENGAGED RESEARCH, THE FAR END OF
THAT IS ABOUT THE SHARED
LEADERSHIP AND PARTNERS, THAT'S
WHAT WE REFER TO AS EQUITABLE
SHARING OF RESOURCES, DECISION
MAKING AND AUTHORITY BETWEEN THE
ACADEMIC PARTNER AND COMMUNITY
PARTNER.
THAT'S WHAT WE SEE LESS OF AND
MAY NOT BE APPROPRIATE IN EVERY
INSTANCE AND EVERY TYPE OF
RESEARCH BUT THAT'S WHEN YOU
MOVE FURTHER ALONG.
ONE OF THE GOALS TO ENSURE THAT
FROM INCEPTION OF IDEAS TO THE
END OF THE PROJECT THAT WE'RE
THINKING ABOUT IMPLEMENTATION,
WE'RE THINKING ABOUT COMMUNITY
BENEFIT AND THAT THOSE BEST
PRACTICES THAT WE LEARNED FROM
OUR RESEARCH ACTUALLY SERVE TO
IMPROVE PEOPLE'S LIVES.
WE WITNESSED INCREASED DISCOURSE
ABOUT HEALTH DISPARITY AND
HEALTH EQUITY WE SAW RESURGE IN
2020.
WE CONDUCTED ANALYSIS JUST
LOOKING AT NEW FUNDING
OPPORTUNITIES THAT WERE RELATED,
WE WERE INTERESTED IN NIMHD TO
FUNDING OPPORTUNITIES RELATED TO
MINORITY HEALTH AND HEALTH
DISPARITIES, MANY OF THOSE
PROJECTS AND FUNDING
OPPORTUNITIES OF COURSE ARE
INTERESTED IN COMMUNITY ENGAGED
RESEARCH, I WILL NOTE YOU CAN BE
CONDUCTING COMMUNITY ENGAGED
RESEARCH THAT'S NOT ON A TOPIC
RELATED TO MINORITY HEALTH AND
HEALTH DISPARITIES.
WHAT YOU SEE IN THE FIGURE IF
YOU COMPARE WITH 2018 AND 2019
OR WHAT I'LL THINK OF AS
PRE-PANDEMIC, THERE HAVE BEEN
MANY MORE NEW NIH FUNDING
OPPORTUNITIES THAT EXPRESSED
EXPLICIT INTEREST IN THESE
AREAS, PARTICULARLY MINORITY
HEALTH AND HEALTH DISPARITIES.
THE TAKEAWAY RELATIVE TO
IMMEDIATE PRE-PANDEMIC YEARS
THERE IS AN INCREASED FOCUS AT
NIH ON THESE TOPICS AND I THINK
IT'S GREAT TO SEE AND IT'S BEEN
SUSTAINED EVEN BEYOND THIS TIME.
WE ALSO LOOKED IN THIS ANALYSIS
OF THE NEW -- THIS WAS 2022, NEW
FUNDING OPPORTUNITIES THAT
INDICATED AN INTEREST IN
MINORITY HEALTH AND HEALTH
DISPARITIES, WHAT WE LOOKED FOR
WAS THE CONTENT.
WHAT ARE THESE INITIATIVES
ACTUALLY SEEKING FROM
INVESTIGATORS, WHAT TOPICS ARE
BEING HIGHLIGHTED AS THOSE OF
GREATEST INTEREST.
AND THERE WERE SEVERAL
CROSS-CUTTING THEMES, COMMUNITY
ENGAGED RESEARCH WAS AMONG THEM
QUITE PROMINENTLY.
OTHER THEMES WERE ABOUT
SOLICITING RESEARCH TO REDUCE
HEALTH DISPARITIES, ADVANCE
HEALTH EQUITY, AMONG CHILDREN,
OLDER ADULTS, INTEGRATING ROLES
AND UNDERSTANDING ROLES OF
SOCIAL DETERMINANTS PARTICULARLY
ADVERSE SOCIAL DETERMINANTS OF
HEALTH AS DRIVERS OF HEALTH
DISPARITIES.
THEY WERE INTERESTED IN
MULTI-LEVEL TO CONSIDER
COMPLEXITIES OF UPSTREAM
DETERMINANTS, HOW IS HEALTH
SYSTEM AND POLICY PLAYING A
ROLE, HOW IS COMMUNITY PLAYING A
ROLE, AND THE LAST BOX IN GRAY
JUST HIGHLIGHTS A FEW EXAMPLES
OF SOME OF THE DISEASES,
CONDITIONS, BEHAVIORAL AREAS
FROM THESE 2022 FUNDING
OPPORTUNITY ANNOUNCEMENTS.
THESE WERE PROJECTS THAT WERE
COVERING HIV/AIDS, CANCER,
SUBSTANCE MISUSE, AND OTHERS.
I JUST TOOK OUT A FEW AS
EXAMPLES.
WHEN WE TALK ABOUT COMMUNITY
ENGAGED RESEARCH IT SOUNDS
SIMPLE.
CONCEPT
CONCEPTUALLY, IT IS, BUT IN
PRACTICE CAN BE COMPLICATED AND
LEAD TO MESSINESS IN SCIENCE AND
TO SOME CHALLENGING DYNAMICS
THAT WOULD NEED TO BE ADDRESSED.
SO WHEN WE ARE APPROACHING THIS
WE HAVE TO BE THOUGHTFUL,
COLLABORATIVE, THESE ARE JUST A
FEW BEST PRACTICES I WILL OFFER
AS STRATEGIES THAT LITERATURE
AND IN MY OWN EXPERIENCE HAVE
BEEN EFFECTIVE AND LED TO
BENEFIT FOR BOTH PARTIES MEANING
COMMUNITY AND OUR ACADEMIC
PARTNERS.
SO ESTABLISHING TRUST IN
RELATIONSHIPS, WE TALK ABOUT
TRUST.
WE ALSO HEARD A LOT ABOUT THIS
DURING COVID-19, RECALL THE
VACCINE, DO WE TRUST IT AND
THOSE TOPICS.
TRUST IS AS A PSYCHOLOGIST, I
SAY IT'S REALLY NUANCED,
UNDERAPPRECIATED SOCIAL
DETERMINANT OF HEALTH.
ONCE RUPTURE OR NOT THERE TO
BEGIN WITH IT'S DIFFICULT TO
BUILD OR REBUILD.
WE TALK ABOUT THIS IN THIS
CONTEXT, MANY UNIVERSITIES ARE
SITUATED IN COMMUNITIES
AROUND -- IN UNDERSERVED
COMMUNITIES AND COMMUNITIES
RESEARCHERS DON'T ENGAGE WITH
THE COMMUNITY THAT SURROUNDS THE
UNIVERSITY, SORT OF IN THEIR
CATCHMENT AREA, BUT THERE MAY BE
A PROJECT AND COMMUNITY
ENGAGEMENT MAY BE ENCOURAGED OR
REQUIRED, AND THEN INVESTIGATORS
APPROACH SOME MEMBER OF A
COMMUNITY OR COMMUNITY
ORGANIZATION AND THE TRUST IS
NOT THERE.
AND SOMETIMES IT'S NOT THE TRUST
OF THE THE INDIVIDUAL
INVESTIGATOR WHO IS APPROACHING
ABOUT MAYBE VERY IMPORTANT IDEA
THAT WOULD HAVE IMPORTANT
IMPLICATIONS TO HEALTH OF THAT
COMMUNITY BUT THE INSTITUTION
ITSELF, THE UNIVERSITY, DOES NOT
HAVE A STRONG REPUTATION IN THE
COMMUNITY AND IS -- THERE'S HIGH
DISTRUST BECAUSE OF THINGS THAT
HAPPENED.
AS AN INVESTIGATOR SEEKING TO
EMBARK IN THIS AREA YOU HAVE TO
THINK ABOUT YOUR POSITION AND
POSITION OF THE UNIVERSITY AND I
THINK ACKNOWLEDGING THOSE THINGS
WHEN WE'RE TALKING WITH OUR
EARLY ON STARTING TO BUILD THESE
RELATIONSHIPS, COMMUNITY
LEADERS, ORGANIZATIONS, BEFORE
THE RESEARCH BEGINS.
THAT'S REALLY IMPORTANT IN TERMS
OF BUILDING MUTUAL TRUST YOU'RE
NOT JUST THERE BECAUSE OF A
PROJECT BUT INTERESTED IN THE
COMMUNITY IN GENERAL.
MEANINGFUL ENGAGEMENT DR. ZENK
MENTIONED, DEVELOPMENT,
INCLUDING IF WE'RE DOING THIS
ALONG THAT CONTINUUM FURTHER
DOWN, THE COMMUNITY MEMBERS ARE
INCLUDED IN THE DEVELOPMENT OF
OUR RESEARCH IDEAS, STUDY
DESIGNS, THEY EVEN HAVE INPUT ON
DATA COLLECTION METHODS THAT.
CAN ENSURE THAT THE RESEARCH IS
RELEVANT AND CULTURALLY
APPROPRIATE.
LOCAL KNOWLEDGE IS REALLY
IMPORTANT.
MANY TIMES COMMUNITIES
UNDERSTAND THINGS IN THEIR
COMMUNITIES IN WAYS SOMEONE WHO
DOES NOT LIVE IN THE COMMUNITY
MAY NOT UNDERSTAND.
SO BEING OPEN AND RESPECTING
LOCAL KNOWLEDGE IS CRITICAL.
INFORMED CONSENT HAS BEEN AN
AREA THAT WE KNOW HAS CREATED A
LOT OF DISTRUST IN SCIENCE AND
MEDICINE.
SO BEING SURE THAT ALL OF OUR
PARTICIPANTS, COMMUNITY PARTNERS
WITH INFORMED ABOUT WHAT WE'RE
DOING, WHY WE'RE DOING IT, WHAT
WE HOPE TO ACCOMPLISH, HOW IT
WILL BENEFIT THEM AND HOW
FINDINGS WILL BE SHARED WITH
THEM ARE CRITICAL IN ENSURING
ETHICAL CONDUCT.
AS WELL AS POWER DYNAMICS,
INHERENT POWER DYNAMIC THAT WE
JUST CAN'T AVOID OR DENY, SO
TALKING ABOUT THAT AND HOW WE'LL
MANAGE THAT IS ALSO VERY
IMPORTANT.
PARTICIPANTS WILL SAY I
PARTICIPATED, I HAVE NO IDEA
WHAT HAPPENED.
I NEVER HEARD OF RESULTS, DON'T
KNOW, DIDN'T GET ANY -- NEVER
HEARD ANYTHING ABOUT IT.
I THINK THEY REALLY ARE
INTERESTED IN WHAT HAPPENS,
THERE ARE WAYS TO DEVELOP
INFOGRAPHICS OR ACCESSIBLE
COMMUNICATION TOOLS TO SHARE
INFORMATION AND RETURN RESULTS
TO INDIVIDUALS IN COMMUNITIES
THAT I THINK WE AS SCIENCE
COMMUNITY NEED TO DO A BETTER
JOB ACCOMPLISHING IN A
CONSISTENT WAY.
MUTUAL BENEFIT THINKING ABOUT
HOW THE WORK WILL BENEFIT
COMMUNITIES NO MAT EVERY WHAT
--
NO MATTER WHAT THE TOPIC IS EVEN
ON BASIC SCIENCE OR PRE-CLINICAL
RESEARCH IT HAS AN ENDPOINT
WE'RE SEEKING TO ACHIEVE TO
BENEFIT THE POPULATION, EVEN
HEARING ABOUT THAT CAN BE REALLY
IMPORTANT.
BUT ESPECIALLY WHEN IT'S A HUMAN
SUBJECTS RESEARCH EFFORT, EVEN
IF IT'S IN THE EARLY STAGE, WE
NEED TO MAKE SURE WE'RE DOING
THAT.
THE ABILITY TO BE FLEXIBLE,
WE'RE NOT ALWAYS FLEXIBLE AS
RESEARCHERS.
WE HAVE OUR FAVORITE METHODS,
FAVORITE INSTRUMENTS TO MEASURE
THINGS.
WE HAVE OUR KNOWLEDGE, SKILLS,
EXPERTISE WE WORKED FOR YEARS TO
DEVELOP.
SHARING THAT WITH SOMEONE
PERCEIVED AS A COMMUNITY MEMBER
MAY NOT ALWAYS BE SOMETHING THAT
WE ARE ADAPTABLE AND FLEXIBLE
ABOUT.
I ALWAYS SAY WE MAY BE THE
CONTENT EXPERTS BUT OUR
COMMUNITY PARTNERS ARE THE
CONTEXT EXPERTS.
SO COMBINATION WILL LEAD US TO
HOPEFULLY MORE RICH FINDINGS
THAT HAVE GREATER POTENTIAL FOR
IMPROVING POPULATION HEALTH.
OF COURSE REFLECTING,
EVALUATING, ALWAYS THINKING
ABOUT AS YOU'RE GOING ALONG IS
THIS WORKING, HOW MIGHT WE MAKE
CHANGES IF THERE ARE ANY
PROBLEMS ADDRESSING THEM EARLY
ON IS IMPORTANT.
THIS ALWAYS SERVES TO BENEFIT
SCIENCE WE CONDUCTING AND THERE
ARE A NUMBER OF ADVANTAGES THAT
YOU CAN SEE HERE.
MOST OF THEM SPEAK FOR
THEMSELVES.
BUT I WILL SAY THAT THIS AREA OF
IMPROVED DATA QUALITY IS
SOMETHING THAT RESEARCHERS CAN
RESONATE WITH.
HOW CAN COMMUNITY ENGAGEMENT
IMPROVE DATA WE'RE COLLECTING.
IF YOU'RE ASKING QUESTIONS, A
SURVEYA QUESTIONNAIRE, GETTING
COMMUNITY INPUT, EVEN SOMETHING
THAT SEEMS SIMPLE, HOW MANY
PEOPLE DOES YOUR HOUSEHOLD
INCOME SUPPORT, THAT'S NOT --
SOUNDS LIKE A SIMPLE QUESTION
BUT WHEN PEOPLE START TO THINK
ABOUT WHAT'S A HOUSEHOLD, WHO IS
A FAMILY, HOW MANY PEOPLE IS MY
INCOME SUPPORTING, IT'S NOT
ALWAYS A SIMPLE QUESTION IN
NON-TRADITIONAL QUESTION.
BRINGING IN THE COMMUNITY WOULD
BE REALLY SOMETHING THAT
RESEARCHERS SHOULD PAY ATTENTION
TO, HOPEFULLY FOSTERING
INNOVATION.
LET ME TURN TO WHAT I THINK OF
AS A SUCCESS STORY,
INTERVENTION, INITIATIVE, I'LL
FOCUS ON ONE, BOTH ARE ONGOING
BUT I THINK WE'VE DEMONSTRATED
EARLY SUCCESS.
WHEN THE PANDEMIC FIRST STARTED,
THAT SUMMER FRANCIS COLLINS THE
THEN-NIH DIRECTOR BROUGHT IN
I.C. DIRECTORS INCLUDING I.C.
DIRECTOR FROM NIMHD, NHLBI.
WE KNOW THERE WILL BE A
CHALLENGE ENGAGING IN VACCINE
TRIALS, WE NEED TO GET AHEAD OF
THIS.
COMMUNITY ENGAGEMENT IS NOT FOR
THE PURPOSE OF RECRUITING
PARTICIPANTS.
IN THIS CONTEXT THOUGH IN A
PUBLIC HEALTH EMERGENCY WE
NEEDED TO MAKE SURE WE COULD
DIVERSIFY TRIALS.
THERE WAS A BIT OF -- WE
UNDERSTOOD THAT.
WE APPROACHED, THERE WERE
INTERESTING CONVERSATIONS WHO
ARE THE TRUSTED MESSENGERS IN
THE COMMUNITY, SOME PEOPLE
THOUGHT SETH CURRY TO TELL
EVERYONE TO JOIN A VACCINE
TRIAL.
THAT WAS NOT THE WAY TO APPROACH
A COMMUNITY.
PEOPLE REALLY DID TRUST THEIR
DOCTOR IF THEY HAVE A TRUSTED
RELATIONSHIP WITH THEIR DOCTOR,
THAT WAS THE MOST TRUSTED
RELATIONSHIP, NOT A CELEBRITY.
SOMEONE ELSE HOUSES OF WORSHIP
AND LEADERS ARE TRUSTED MEMBERS.
WE WORKED ON THE CEAL
INITIATIVE, ABOUT ADDRESSING
COVID MISINFORMATION WHICH STILL
PROLIFERATES ON X AND OTHER
PLACES.
BUT I WANT TO FOCUS ON RADx
UNDERSERVED POPULATIONS, PART OF
THE RADx INITIATIVE.
FRANCIS COLLINS ALLOCATED $500
MILLION OF THE NIH APPROPRIATION
TO ADDRESS COVID-19 RESEARCH FOR
THE UNDERSERVED POPULATIONS PART
OF THE RADx INITIATIVE.
THAT WAS THE GREATEST SHARE OF
THE ALLOCATION.
THAT WAS A REALLY BIG DEAL,
DEMONSTRATING A COMMITMENT FROM
HIM AND NIH LEADERS TO GET AHEAD
OF THIS.
WE HAD TO APPROACH INVESTIGATORS
WHO ALREADY HAD COMMUNITY
RELATIONSHIPS BECAUSE WE KNEW WE
WOULDN'T BE ABLE TO DEVELOP
THEM.
WE DID NOT HAVE TIME.
WE'RE IN THE MIDDLE OF A PUBLIC
HEALTH EMERGENCY.
PEOPLE ARE DYING.
DISPARITIES ARE EMERGING IN
EVERY CORNER.
WE ENGAGED INVESTIGATORS WHO HAD
A TRACK RECORD, WHO WE COULD
ENGAGE, WE HAD LOTS OF
APPLICATIONS, ESPECIALLY IN 2020
FROM REALLY STELLAR
INVESTIGATORS AND THE GOAL WAS
TO APPLY COMMUNITY ENGAGED
RESEARCH METHODS TO INCREASE
ACCESS AND UPTAKE OF COVID-19
TESTS.
THERE WERE NO VACCINES AT THAT
TIME, WE WANTED TO IMPLEMENT
TESTING AND MAKE SURE NO
COMMUNITIES WERE LEFT BEHIND.
AND SO THIS IS AN INITIATIVE
FOCUSED ON POPULATIONS THAT
EXPERIENCED HEALTH DISPARITIES,
WE WORKED IN RURAL, URBAN,
SCHOOLS, PUBLIC HOUSING,
CORRECTIONAL FACILITIES, THIS
INCLUDES OVER 350 PARTNERSHIPS
ACROSS THE COUNTRY AND EVEN IN
THE TERRITORIES, TO INCREASE
ACCESS AND UPTAKE OF TESTS TO
EVALUATE TESTING INTERVENTIONS
WHICH WAS A BIG PART OF IT, TO
EVENTUALLY PROMOTE VACCINE
UPTAKE AND JUST WRAPAROUND CARE
AND TREATMENT GUIDED BY
PRINCIPLES THAT CENTERED
COMMUNITIES, FOCUSED ON TRIBAL
SOVEREIGNTY, CONFIDENTIALITY,
SHARING, WE WANTED TO ENSURE THE
COMMUNITY KNEW NIH'S INTEREST
WAS ENTRUST WORTHINESS, AND
ENGAGE CO-LEARNING AND
DISSEMINATION BACK TO THE
COMMUNITIES.
HERE IS A SNAPSHOT.
SINCE 2020 THIS NETWORK
SUPPORTED 150 PROJECTS THAT ARE
COMMUNITY ENGAGED, INCLUDING 138
RADX-UP PROJECTS FUNDED BY NIH,
ADDITIONAL PROJECTS FUNDED BY
THE COORDINATION CENTER.
AND THESE ARE BASED AT ACADEMIC
INSTITUTIONS RELYING ON ACTIVE
PARTNERSHIPS WITH THE VARIOUS
COMMUNITY ORGANIZATIONS.
THE INITIATIVE IS NEAR
COMPLETION.
WE STARTED MAKING IN OUR ON YOU
FINAL AWARD FOR PHASE 4,
DISSEMINATION AND IMPLEMENTATION
OF WHAT WE FOUND TO BE
EFFECTIVE.
WE ENROLLED 400,000
PARTICIPANTS, ADMINISTERED OVER
3 MILLION TESTS IN UNDERSERVED
COMMUNITIES, PUBLISHED OVER 300
ARTICLES SO FAR.
NIH IS COMMITTED AND
DEMONSTRATED THIS COMMITMENT FOR
COMMUNITY ENGAGED NETWORKS, WE
ALSO IMPLEMENTED COMMON DATA
ELEMENTS, WANTED PROJECTS TO ASK
QUESTIONS AND COLLECT DATA AND
OVER 80% OF PROJECTS HAVE SHARED
AND COLLECTED COMMON DATA
ELEMENTS NOW IN A CENTRAL
REPOSITORY.
WHICH WILL BE AVAILABLE FOR
SHARED ANALYSES AND CONSORTIUM
LEVEL ANALYSES.
WE'RE THINKING ABOUT MECHANISMS
TO DISSEMINATE.
WE WANTED TO FINANCIAL SUPPORT
COMMUNITY-BASED ORGANIZATIONS
AND LOOKED CLOSELY TO ENSURE
INVESTIGATORS WERE EQUITABLE IN
SHARING OF RESOURCES NEEDED TO
GET THIS WORK DONE.
WE'VE PUBLISHED WHO SPECIAL
SUPPLEMENTS IN AMERICAN JOURNAL
OF PUBLIC HEALTH, CAN YOU LEARN
MORE ABOUT DETAILS AND SPECIFICS
OF THE PROJECTS BUT IT'S AN
IMPRESSIVE SET OF PROJECTS WITH
A SEPARATE ARM ON SCHOOL
TESTING, LEARNED A LOT AT THAT,
RETURNED A SCHOOL ARM OF
RADX-UP, TWO SPECIAL ISSUES IN
THE PEDIATRICS JOURNAL FOCUSED
ON SCHOOL TESTING, AND I'LL
SHARE A COUPLE THOUGHTS HERE
ABOUT WHAT INTERVENTIONS WERE
SUCCESSFUL.
CERTAINLY WE LEARNED
COMMUNITY -- CULTURALLY TAILORED
IN MESSAGING WAS IMPORTANT,
CULTURAL ATTENTION TO CULTURAL
RELEVANT AND LINGUISTICALLY
APPROPRIATE SERVICES WAS
IMPORTANT.
MOBILE TESTING UNITS ALSO
DEMONSTRATED EFFICACY, POLICY
INTERVENTIONS FOR EXAMPLE IN THE
SCHOOL SETTING, POLICY
INTERVENTIONS THAT FOCUSED ON
COMPARING SCHOOL SYSTEMS AND
DISTRICTS THAT HAD MASKING AND
TESTING REQUIREMENTS COMPARED TO
THOSE THAT DID NOT.
EVIDENCE BORE THAT THOSE
POLICIES FOR MASKING AND
VACCINATION REDUCED CASES AND
REDUCED TIME OUT OF SCHOOL FOR
THOSE KIDS.
AND STAFF.
WHAT DIDN'T WORK, TOP-DOWN
COMMUNICATION, GENERAL MESSAGES
SEEN AS LESS EFFECTIVE.
LACK OF REPRESENTATION, SO
INTERVENTIONS THAT DID NOT
REALLY HAVE STRONG COMMUNITY
REPRESENTATION THERE AT ALL
STAGES OF THE WORK.
SINGLE CHANNEL OUTREACH WAS
RELYING ON ONE TYPE OF OUTREACH
INSTEAD OF COVERING EVERYTHING
THAT WAS THERE AT OUR DISPOSAL.
MISSED CERTAIN SEGMENTS OF THE
POPULATION, COG NIECES COGNIZAD
FOLLOW-UP WAS IMPORTANT IN ALL
OF THIS WORK.
AS I CLOSE, JUST TO NOTE ALL OF
THIS IN TERMS OF COMMUNITY
ENGAGEMENT CANNOT BE AN
AFTERTHOUGHT.
IT REQUIRES TOO MUCH WORK, TOO
MANY THINGS INVOLVED.
I'VE NOTICED INVESTIGATORS, I'M
WELL AWARE WE'LL WRITE A NICE
GRANT APPLICATION AND IT SOUNDS
GREAT BUT IT'S WINDOW DRESSING
AND MANY INVESTIGATORS AND
REVIEWERS ARE BECOMING MORE
AWARE HOW TO DETECT THAT.
WE WANT THIS TO BE REAL AND
PREVENT HELICOPTER RESEARCH
WHICH COMMUNITY MEMBERS ARE ALL
HIGHLY AWARE OF, INVESTIGATORS
JUST COME IN, HELICOPTER HOVERS,
GETS THE INFORMATION AND WE'RE
OUT.
WE WANT TO AVOID THAT, THAT
WE'RE DEMONSTRATING WE'RE HERE
FOR THE LONG HAUL.
THIS IS IMPORTANT FOR ALL KINDS
OF RESEARCH, NOT JUST MINORITY
HEALTH AND HEALTH DISPARITIES
FOCUSED SCIENCE.
THESE ARE A FEW FUNDING
OPPORTUNITIES, ALL AVAILABLE ON
THE NIMHD WEB PAGE.
I ENCOURAGE YOU TO FOLLOW US ON
ALL OF OUR CHANNELS, WE HAVE A
VERY ACTIVE COMMUNICATIONS
PROGRAM.
AND SO WE HAVE LOTS OF IMPORTANT
CHANNELS.
I HOPE YOU'LL FOLLOW AND TRACK
AND BECOME MORE ENGAGED WITH US.
THANK YOU.
>> THANK YOU.
A NAIVE QUESTION, I'M INTRIGUED,
I TOOK A LOT OF NOTES, I'M
TAKING THEM HOME.
YOU TALK ABOUT SUPPORT FOR THE
LONG HAUL.
COULD YOU EXPAND ON THAT AND HOW
DO WE SUPPORT THAT THROUGH OUR
INSTITUTIONS, RIGHT?
BECAUSE IT DOESN'T SEEM LIKE
THIS IS AN NIH THING, THIS IS
ALSO A PARTNERSHIP WITH ACADEMIC
CENTERS AND COMMUNITY CENTERS.
>> GREAT QUESTION.
SO THE NOTION OF THAT YOU'RE
THERE FOR THE LONG HAUL MEANS IF
YOU'RE FOCUSED ON ADDRESSING
ALLERGIES, INTERESTED IN
ADDRESSING DERMATITIS OR
SOMETHING LIKE THAT, THIS IS
YOUR PROGRAM OF RESEARCH, THE
PROGRAM OF RESEARCH IS THERE FOR
THE LONG HAUL.
AND SO ENGAGING WITH COMMUNITY
PARTNERS AND ORGANIZATIONS THAT
SERVE PEOPLE THAT HAVE THE
ALLERGY OF FOCUS FOR YOUR LAB,
FINDING OUT THEIR INTERESTS AND
COMMUNITY CHALLENGES BEFORE YOU
EVEN CONCEPTUALIZE, YOU'RE
BUILDING THAT RELATIONSHIP.
AS YOU GO ALONG IN THE WORK,
YOU'RE CONTINUING THAT EVEN IF
YOU DON'T HAVE AN ACTIVE
PROJECT.
YOU'RE STILL MEETING WITH THEM A
FEW TIMES A YEAR JUST TO HEAR
ABOUT WHAT'S GOING ON. IT'S
MAINTAINING THAT CONNECTION AND
THAT RELATIONSHIP SO THAT YOU
AVOID PERCEPTION THAT YOU'LL BE
BACK WHEN YOU HAVE ANOTHER
PROJECT BUT YOU'RE CONSTANTLY
COLLECTING IN, MAKING SURE
THINGS ARE GOING OKAY AND THAT
EVEN WITHOUT ANY RESOURCES TO
SHARE WITH THEM AT THAT TIME
THAT MAKES A REALLY BIG
DIFFERENCE.
>> EMILY HAS A QUESTION FOR YOU.
>> THANK YOU.
INCREDIBLE WORK YOU ALL HAVE
DONE TO ENGAGE MY QUESTION IS
SIMILAR TO ONE JUST ASKED
BECAUSE I THINK THIS IS A SPACE
THAT I'M INTERESTED IN.
I'M AN EARLY CAREER
INVESTIGATOR, HELICOPTER IS
SOMETHING I WANT TO AVOID,
ETHICS IS IMPORTANT, TRUST AND
PARTNERSHIP IS IMPORTANT, THERE
NEEDS TO BE INSTITUTIONAL
SUPPORT SO WHEN THERE'S A LULL
IN PROJECTS THERE COULD BE
SUSTAINED TRUST THAT I'M NOT
JUST THERE WHEN THE FUNDING IS
THERE, HOWEVER I HAVE
LIMITATIONS AND RESOURCES IN
BETWEEN SO I WAS CURIOUS, MAYBE
YOU ALREADY ANSWERED THIS WITH
WHAT WAS JUST ASKED, BUT
SUSTAINABILITY OF WHAT HAPPENS
IN THOSE LULLS AND HOW CAN YOU
TRY TO MAINTAIN THE WORK THAT
DOESN'T FEEL LIKE IT'S SO GRANT
FOCUSED EVEN IF THAT'S WHAT I
FEEL LIKE I HAVE RESOURCES FOR.
>> WITHIN UNIVERSITIES THERE ARE
OPPORTUNITIES FOR PILOT FUNDS,
SEED FUNDS, WAYS A RESEARCH TEAM
CAN OBTAIN A SMALL AMOUNT OF
MONEY TO BE ABLE TO DO SOMETHING
IN THE COMMUNITY.
I ALSO WOULD ENCOURAGE YOU TO GO
TO LOCAL HEALTH FAIRS, COMMUNITY
FAIRS, WHERE YOU ARE PROVIDING
SOME SCREENING OR SOME TEST, AND
IF YOU DO FIND ANYTHING, YOU
HAVE TO THINK WHAT WE WOULD DO,
MAKING A REFERRAL TO COLLEAGUES
AT THE HOSPITAL, WHERE THEY
COULD FOLLOW UP FOR WRAP-AROUND
CARE, BUT DOING THINGS LIKE THAT
TO SHOW PRESENCE IN THE
COMMUNITY CAN BE IMPORTANT AND
ANYTIME THERE ARE OPPORTUNITIES
TO HAVING A MEETING AT THE
UNIVERSITY, HAVING WEBINARS,
INVITING MEMBERS FROM THE
COMMUNITY FROM YOUR COMMUNITY
PARTNERS TO LISTEN AND LEARN ARE
THINGS WE DON'T OFTEN DO THAT
DON'T COST US MUCH TIME OR MONEY
BUT DEMONSTRATES YOU ARE --
THERE'S A CO-LEARNING YOU'RE
INTERESTED IN, YOU WANT THEM TO
UNDERSTAND MORE AND YOU GO TO
THEIR EVENTS WHEN THAT
OPPORTUNITY PRESENTS ITSELF.
>> SHARON, DO YOU HAVE A
QUESTION?
YOUR HAND IS UP.
>> JUST REAL QUICK, WHEN YOU
TALK ABOUT BEING THERE FOR THE
LONG HAUL, DOES IT MEAN YOU KNOW
THIS GOING IN AND MAYBE
ESTABLISH A BASELINE SO WHEN YOU
START TO DO SOME RESEARCH AND
COME BACK AND SEE HOW YOU
PROGRESSED OVER TIME, WHERE YOU
WANT TO GO MAYBE IN TWO OR
THREE, FOUR OR FIVE YEARS TO
MAKE ADDITIONAL IMPROVEMENTS.
>> THE CONCEPT OF THE LONG HAUL
IS TRYING TO DEMONSTRATE THAT
YOU'RE NOT THERE FOR JUST A
SINGLE PROJECT FOR YOUR OWN
CAREER ADVANCEMENT AND BENEFIT
AND TENURE.
THAT'S THE MESSAGE, THAT THEY
CAN REACH OUT IF THEY HAVE
QUESTIONS, WANT YOU TO SPEAK TO
A GROUP YOU'D BE WILLING TO COME
PRO BONO AND SPEAK.
MOST RESEARCH IS FOR THE LODGE
HAUL.
WE HAVE A RESEARCH PROGRAM,
EXPECT IT TO LAST FOR OUR CAREER
SO THINKING ABOUT IT IN SAME WAY
YOU WANT YOUR COMMUNITY
RELATIONSHIPS TO LAST AS LONG AS
YOUR PROJECTS ARE GOING TO LAST,
BUT THAT DOESN'T MEAN YOU HAVE
TO ENGAGE WITH THEM SUPER
REGULARLY, I'M NOT SAYING YOU
NEED TO TALK TO THEM EVERY MONTH
BUT EVEN A FEW TIMES A YEAR
CHECK IN, IF YOU DON'T HAVE AN
ACTIVE PROJECT WHERE YOU'RE
SEEING THEM SO THEY UNDERSTAND
THAT THEY ARE STILL ON YOUR
RADAR, STILL IMPORTANT, WHERE
YOU'RE GOING WITH THINGS,
RETURNING YOUR FINDINGS TO THEM
SO THEY KNOW WHAT'S GOING ON,
LETTING THEM KNOW YOUR
TIMELINES, COMMUNITY PARTNERS
UNDERSTAND OBTAINING A GRANT CAN
TAKE A LONG TIME AND YOU MAY NOT
HAVE FUNDING AT ALL TIME.
BEING OPEN ABOUT THOSE
CHALLENGES INVITING THEM TO YOUR
LAB MEETINGS, THINGS LIKE THAT
TO SHOW YOU'RE THERE FOR THE
LONG HAUL.
>> THESE PRESENTATIONS ARE IN
THE ELECTRONIC COUNCIL BOOK
UNDER THE OPEN SESSION TAB ON
THE COUNCIL INFORMATION PAGE, IF
YOU WANT TO SEE THESE
PRESENTATIONS AFTERWARDS.
>> THANK YOU.
FINAL PRESENTER, DR. WATSON FROM
NIH OFFICE.
THANK YOU.
>> I WOULD BE REMISS IF I DIDN'T
FOLLOW UP TO THAT LAST QUESTION.
I CONSIDER MYSELF LUCKY AND
BLESSED, I GREW UP AT THE NCI,
NIMHD AS WELL, NHLBI.
WHY DO I SAY THAT?
I REMEMBER AS EARLY-STAGE
INVESTIGATOR GETTING MY FIRST
ADMINISTRATIVE SUPPLEMENT, I
WANT TO ENCOURAGE YOU TO THINK
ABOUT HOW DO YOU ENCOURAGE YOUNG
INVESTIGATORS TO LEVERAGE
ADMINISTRATIVE SUPPLEMENTS,
DIVERSITY SUPPLEMENTS, THAT'S
WHAT ALLOWED ME TO BRING A
COMMUNITY ENGAGED RESEARCH AIM
TOE SOMETHING PEER REVIEWED AND
FUNDED TO TAKE A CONCEPT FROM
IDEA, CITIZEN AND COMMUNITY
SCIENCE, HOW DO I DEVELOP THIS
INTO AN INTERVENTION, THAT
SMALLED SMALL
SUPPLEMENT TURNED INTO AN R01
BECAUSE OF MENTORING,
SPONSORSHIP, SUPPORT EARLY ON IN
MY CAREER SO REALLY EXCITED
ABOUT THAT.
I'M KARRIEM WATSON, CHIEF
ENGAGEMENT OFFICER FOR "ALL OF
US" PROGRAM.
WHAT IS "ALL OF US," THE
RESEARCH PROGRAM, HOW COMMUNITY
ENGAGEMENT HAS BEEN INTEGRAL.
HOPEFULLY YOU'RE HEAR THEMES
FROM COLLEAGUES REITERATED HERE,
ONE THING, THE REASON I SHOW
THIS SLIDE, PLACE AND SPACE
MATTERS.
SO OFTEN WHEN YOU THINK ABOUT
WHERE CLINICAL TRIALS ARE
CONDUCTED, THEY ARE NOT
CONDUCTED IN PLACE AND SPACE
WHERE PEOPLE WHO CARRY THE
BURDEN OF DISEASE GET THEIR
CARE.
IT HAS ENSURED WE'RE ENROLLING
AND ENGAGING PARTICIPANTS FROM
ALL ACROSS THE U.S. AND
TERRITORIES, INTENTIONAL.
ANOTHER THING INTENTIONAL THAT
HAPPENED THAT HELPED LEAD TO
DIVERSITY, EQUITY, AND INCLUSION
IN "ALL OF US" WAS THE
INTENTIONAL ENGAGEMENT OF
FEDERALLY QUALIFIED HEALTH
CENTERS, I MET DR. ZENK AT UIC,
CHARGED IN 2014 STANDING UP THE
RESEARCH OFFICE AT NETWORK OF
FEDERALLY TRAINED OFFICES TO
BRING THE COMMUNITY IN TO
RESPOND.
WE USED SOMETHING VERY SIMPLE,
THE COMMUNITY HEALTH NEEDS
ASSESSMENT THAT ALL FQHCS ARE
REQUIRED TO DO FOR HRSA FINDING
TO DRIVE WHAT RESEARCH WAS
CONDUCTED, SOMETHING SIMPLE.
WE NOW SEE DIVERSITY IN GENOMICS
RESEARCH WE'VE HISTORICALLY NOT
SEEN BEFORE.
THINKS ABOUT THE RESEARCH,
POLYGENIC RISK SCORES, THAT DATA
AND THAT RESEARCH IN THE PAST
HAS MOSTLY BEEN GENERATED BY
DATA THAT'S NOT ALWAYS
GENERALIZABLE.
FROM POPULATIONS WHO DON'T CARE
THE BURDEN OF DISEASE, 94% OF
DATA HAS COME FROM EUROPEAN
POPULATIONS THAT WE KNOW DOES
NOT NECESSARILY REFLECT
DIVERSITY OF THE U.S.
THROUGH COMMUNITY ENGAGEMENT, I
OFTEN TELL ME COLLEAGUES, I'LL
TALK MORE ABOUT THIS, DEFINITION
DOWNSTREAM SUCCESSFUL ENGAGEMENT
IS NOT ENROLLMENT.
I WANT TO BE CLEAR, SOMETIMES
PEOPLE WILL SAY YOU DID
ENGAGEMENT EVENT, HOW MANY
PEOPLE ENROLLED?
I REMIND THEM MY JOB IS NOT TO
ONLY ENROLL PARTICIPANTS, MY JOB
IS TO HAVE UPSTREAM ENGAGEMENT
THAT SOMETIMES CAN LEAD TO
TRUSTED PARTNERSHIPS, EQUITABLE
ENGAGEMENT, TRUSTWORTHINESS AND
OTHER THINGS THAT CAN LEAD AND
SUPPORT DOWNSTREAM ENROLLMENT,
BUT SUCCESSFUL ENGAGEMENT IS NOT
ALWAYS MEASURED BY ENROLLMENT.
I WANT TO POINT OUT HERE THROUGH
OUR PARTNERS WE HAVE MULTIPLE
NATIONAL COMMUNITY ENGAGEMENT
PARTNERS THAT I'LL TALK ABOUT
THAT LED TO MULTIPLE LEVELS OF
DIVERSITY, EQUITY, AND
INCLUSION, IN GENOMIC RESEARCH.
"ALL OF US" IS THE LARGEST
SECONDARY DATASET FOR SEXUAL AND
GENDER MINORITY POPULATIONS, 51%
SELF-IDENTIFY AS FEMALE AT
BIRTH, 7.5% FROM RURAL AREAS,
POPULATIONS OLDER IN AGE HAVE
NOT BEEN INCLUDED IN CLINICAL
TRIALS AND WITH DISABILITY.
YOU'LL SEE THAT THROUGH
PARTNERSHIPS WITH ORGANIZATIONS
THAT REFLECT THOSE ORGANIZATIONS
REALLY ONE OF THE THINGS THAT
ALLOWED US TO INCLUDE THIS.
PARTICIPANTS WITH BACK PAIN, FOR
EXAMPLE, IN THE DATASET,
HOPEFULLY OTHER RESEARCHERS WILL
BE INTERESTED IN THIS DATA THAT
WE HAVE IN OUR DATASET AND HOW
THIS DATA MAY DRIVE RESEARCH
PRIORITIES THAT ARE IMPORTANT TO
YOU ALL.
OF OUR DIVERSE PARTICIPANTS
17,000 SAY THEY HAVE A BLOOD
RELATIVE DIAGNOSED WITH SPINE,
MUSCLE, BONE DISORDER.
THINK ABOUT WHAT THAT MEANS WITH
FAMILY HISTORY AND HOW WE ENGAGE
IN PRECISION MEDICINE RESEARCH.
THE OTHER THING THAT'S IMPORTANT
IN "ALL OF US" IS TYPE OF DATA
WE COLLECT, IMPORTANT TO COLLECT
BIOLOGICAL DATA SUCH AS BLOOD,
SALIVA, BUT ALSO LIFESTYLE DATA
LIKE FITBIT DATA, SOCIAL
DETERMINANTS OF HEALTH DATA,
SURVEY DATA, EVEN ACCESS TO
ELECTRONIC HEALTH RECORD THAT
HAS ALLOWS US TO UNDERSTAND
INTERSECTIONALITY OF HEALTH
DISPARITIES RESEARCH.
I WANT TO TALK ABOUT
EVIDENCE-BASED PRACTICES AND
TOOLS.
AS I SAID, I'M TRAINED AS A
COMMUNITY ENGAGED RESEARCHER
WITH IMPLEMENTATION SCIENCE.
ONE THING I HEARD IN MY CAREER
IT WAS NOT RIGOROUS, AND WHAT
YOU'VE IMPLEMENTED IS GREAT BUT
I DON'T KNOW HOW TO SCALE OR
EVALUATE IT AT OTHER PLACES.
I TOOK A SOCIAL ECOLOGICAL
FRAMEWORK WE USED TO DEVELOP
LUNG CANCER SCREENING AND
TOBACCO CESSATION WITHIN A
FEDERALLY QUALITIED HEALTH
CENTER, ADAPTED INTO A COMMUNITY
ENGAGEMENT MODEL SO WE COULD
TELL OUR PEERS HOW TO DO THIS
WORK AND CREATE METRICS ACROSS
MULTIPLE LEVELS, TO THINK ABOUT
HOW DO YOU ENGAGE SOMEONE WITH
OUTREACH AND AWARENESS AND WHAT
ARE METRICS, HOW DO WE THINK
ABOUT EDUCATION AND ACCESS TO
CLINICAL TRIALS?
ONE BIG THING WE HEARD IN TERMS
OF LACK OF DIVERSITY IT'S NOT
LACK OF PARTICIPATION, IT'S
ACCESS.
THERE'S NEW STUDIES THAT SHOW
WHEN YOU OFFER CERTAIN
POPULATIONS HISTORICALLY
MARGINALIZED OR MINORITIZED, THE
OPPORTUNITY TO PARTICIPATE IN
RESEARCH STUDIES, THEY SAY YES
MORE OFTEN THAN NO BECAUSE
HISTORICALLY ACCESS HAS BEEN AN
ISSUE SO WE THINK WHERE OUR
STUDIES ARE LOCATED.
WE THINK HOW DO WE ENGAGE FOR
ENROLLMENT AND RETENTION.
ANOTHER THING IS CONCEPT OF
RETENTION.
PARTICIPANTS AS PARTNERS, HOW DO
WE CREATE RESEARCH PROJECTS THAT
PARTNERS ARE HELPING US DEVELOP.
LASTLY KNOWLEDGE MOBILIZATION.
WE SPECIFICALLY SAY KNOWLEDGE
MOBILIZATION AND NOT
DISSEMINATION HERE BECAUSE IT'S
REALLY IMPORTANT ABOUT HOW DO WE
MOBILIZE KNOWLEDGE.
WE HAVE A FAMILY CHAT IN MY
FAMILY, WE TEXT AND HIGHLIGHT
THINGS.
I'VE SAID BEFORE RECENTLY I PUT
IN A PUBLICATION CAME OUT ABOUT
THE WORK I'VE BEEN DOING ON
SOUTH SIDE OF CHICAGO WITH
BARBERS.
YOU CAN TELL YOUR FAMILY READ
SOMETHING, NO ONE RESPONDED
ABOUT THIS AMAZING PUBLICATION I
HAD, DOING WORK ON THE SOUTH
SIDE OF CHICAGO GETTING BARBERS
TO INCREASE COLORECTAL CANCER
SCREENING AMONG CLIENTS, NOTHING
HAPPENED, BUT THEN MY
BROTHER-IN-LAW SAID, OH, DID I
SOMETHING THAT EVERYONE
COMMENTED ON THAT.
OUR FAMILY AND MANY PEOPLE IN
THE COMMUNITY DO NOT READ OUR
PUBLICATIONS.
SO IF WE'RE DEPENDING ON
PUBLICATIONS TO BE THE ONLY WAY
WE DISSEMINATE THAT'S NOT GOING
TO GET IT OUT.
THESE PARTNERS ARE AN EXAMPLE OF
THAT.
ONE THING DR. WALKER TALKED
ABOUT IN HIS OPENING WAS
IMPORTANCE OF LEVERAGING
RESOURCES.
EACH OF THESE 18 PARTNERS ARE
FUNDED RESOURCES TO DO COMMUNITY
ENGAGEMENT IN POPULATIONS
HISTORICALLY UNDERREPRESENTED IN
BIOMEDICAL RESEARCH.
EACH HERE HAS AWARD TO ADDRESS
THIS WHEN I FIRST CAME TO THE
"ALL OF US" PROGRAM AS A CHIEF
ENGAGEMENT OFFICER I ASKED A
SPECIFIC QUESTION, WE WERE
ENGAGING HBCUs IN RESEARCH BUT
DIDN'T SEE ONE FUNDED AS
ENGAGEMENT PARTNER.
WE DID THE WORKSHOPS, WE DID THE
OUTREACH TO LET THOSE HBCUs
KNOW THERE WERE OPPORTUNITIES TO
APPLY FOR FUNDING TO HELP US
ENGAGE MORE PARTNERS.
I'M EXCITED TO NOTE XAVIER
UNIVERSITY IS THE FIRST AWARDED
FOR ENGAGEMENT.
WE HAD HOWARD UNIVERSITY, WE HAD
MOREHOUSE AND TUSKEGEE FOR
ENROLLMENT BUT NOT SPECIFICALLY
FOR ENGAGEMENT.
NOW WE HAVE THAT.
I'M EXCITED ABOUT IT.
I THINK ABOUT THE AMERICAN
ASSOCIATION OF HEALTH AND
DISABILITIES, THE WORK THEY HAVE
DONE TO MAKE SURE OUR STUDY IS
EQUITY AND IN TERMS OF HOW DO WE
ENGAGE POPULATIONS ON
DISABILITY.
AN EXAMPLE HOW WE
OPERATIONALIZED A FEW OF THESE.
WE THINK ABOUT OUTREACH AND
AWARENESS.
THE FAITH-BASED COMMUNITY IS A
TRUSTED MESSENGER GETTING THE
WORD OUT.
ONE PREVIOUSLY FUNDED PARTNER,
NATIONAL BAPTIST CONVENTION USA,
AWARDED TO DO OUTREACH AND
ENGAGEMENT EVENTS FOR US.
PRIDEnet BECAUSE ONE OF THE
THINGS WE KNOW ALTHOUGH WE'RE
THE LARGEST SECONDARY DATASET
FOR SEXUAL AND GENDER MINORITIES
THERE'S STILL DISPARITY IN TERMS
OF RESEARCHERS, FROM THE LGBTQ+
COMMUNITY, CONDUCTING THE
RESEARCH.
WE PARTNER WITH PRIDEnet TO
CONDUCT RESEARCH ABOUT THOSE
HEALTH DISPARITIES.
WE ALSO PARTNER WITH NATIONAL
ALLIANCE FOR HISPANIC HEALTH TO
UTILIZE MOBILE ENGAGEMENT,
THERE'S A CAUTION IN HOW WE
UTILIZE MOBILE ENGAGEMENT UNITS.
YOU HAVE TO MAKE SURE YOU'RE NOT
USING THEM IN A HELICOPTER
RESEARCHER APPROACH.
WE HAVE BEEN GUILTY, SOME
PARTNERS GUILTY OF THAT IN THE
PAST.
ONE OF THE THINGS I MANDATED
UNDER OUR GOAL IS THAT BEFORE
YOU GO INTO A COMMUNITY TO
ENGAGE FOR ENROLLMENT THAT VAN
HAS TO BE IN THE COMMUNITY TO
TALK ABOUT EDUCATION,
OPPORTUNITIES, EVEN HAVING
COMMUNITY MEMBERS WALK UP TO
MOBILE ENGAGEMENT UNIT, WHAT IS
IS "ALL OF US."
WE WERE IN MACON COUNTY, IN
ALABAMA, FIVE YEARS BEFORE WE
ENROLLED OUR FIRST PARTICIPANTS.
FIVE YEARS TO BECOME
TRUSTWORTHY, TO BUILD
RELATIONSHIPS, AND TO IDENTIFY
PARTNERS BOTH ON THE GROUND IN
MACON COUNTY TO HELP US.
COMMUNITY CAME BACK AND SAID TO
US, WE DID NOT SAY ARE YOU
READY, THEY SAID THEY WOULD LET
US KNOW WHEN THEY ARE READY.
LAST YEAR THEY SAID WE'RE READY
BECAUSE YOU'VE DONE THE PROPER
WORK FOR FIVE YEARS TO BUILD
RELATIONSHIPS.
PARTICIPANTS AS PARTNERS, WE'RE
VERY EXCITED THAT OUR
PARTICIPANTS SIT SHOULDER TO
SHOULDER WITH US, ALMOST IN A
SHARED DECISION MAKING APPROACH,
ON THE IRB, SURVEY DESIGN.
ONE MENTOR SAYS TO ME, KARRIEM,
IF YOU DON'T SEE ANYTHING THAT'S
A MEASURABLE DIFFERENCE, TRUE
ENGAGEMENT HAS LIKELY NOT TAKEN
PLACE.
WE SAW THIS IN OUR SDOH FORUM.
WE HAD A SOCIAL DETERMINANTS OF
HEALTH QUESTIONNAIRE WITH 27
MEASURES.
PARTNERS SAID YOU'RE MISSING KEY
QUESTIONS.
I GAVE MY SCIENTIFIC ANSWER
ABOUT HOW IF I ADDED WHAT THE
COMMUNITY WANTED THE FORM WOULD
BE TOO LONG, I HAD TESTED THIS
OUT.
THEY SAID WE DON'T CARE ABOUT
USER EXPERIENCE.
WE NEED THESE TWO QUESTIONS
ASKED IN "ALL OF US."
WE ASKED THE QUESTION ABOUT
DISCRIMINATION IN THE HEALTHCARE
ENVIRONMENT BECAUSE THE
COMMUNITY, WE ASKED ABOUT THE
IMPORTANCE OF SPIRITUALITY IN
PRECISION HEALTH.
I WOULD HAVE LEFT THAT OFF THE
SDOH FORM BUT PARTICIPANTS SAID
WE NEED TO ADD THESE QUESTIONS.
LASTLY KNOWLEDGE MOBILIZATION.
WE WORK WITH A PARTNER WITH
IGNITE, SANDBOXES, SHOWS THE
COMOONT -- COMMUNITY THIS IS TE
DATA WE HAVE, WHAT RESEARCH
QUESTION DO YOU WANT TO SEE
ASKED?
I'LL END TALKING ABOUT
IMPORTANCE OF KNOWLEDGE
MOBILIZATION AND RETURN OF
VALUE.
BEFORE ALL "ALL -- "ALL OF US"
ENROLLED WE HELD 60 COMMUNITY
LISTENING SESSIONS.
ONE KEY THING THAT CAME UP WAS
IMPORTANCE OF RETURNS VALUE TO
PARTICIPANTS AND NOT FOR US AS
THE "ALL OF US" RESEARCH PROGRAM
TO DEFINE THAT VALUE BUT FOR
PARTICIPANTS TO SAY WHAT'S
VALUABLE TO THEM.
ONE OF THE THINGS WE HEARD WAS
IF WE'RE GOING TO RETURN GENETIC
INFORMATION WE NEED TO, A, MAKE
SURE PARTICIPANTS HAD ACCESS TO
GENETIC COUNSELORS BECAUSE NOT
ALL PARTICIPANTS WHO GET THIS
INFORMATION WILL UNDERSTAND HOW
TO COMMUNICATE TO PROVIDERS,
FAMILY MEMBERS.
WE PARDON -- PARTNERED TO HAVE
ACCESS TO FREE GENETIC
COUNSELOR.
THEY TOLD US IT'S IMPORTANT TO
RETURN INFORMATION IN A
COMMUNITY SETTING.
SO WE COMBINED THE PROJECT
LOOKING AT FAITH BASED
COMMUNICATIONS AND RETURN OF
VALUE ON COMMUNITY EVENTS WE
CULMINATED AT THE AFRICAN
AMERICAN HISTORY MUSEUM AND
SMITHSONIAN AFRICAN AMERICAN
HISTORY MUSEUM, TALKED ABOUT
IMPORTANCE OF SPIRITUALITY,
GENOMIC MEDICINE WITH KEY
GENETICISTS ANDS RESEARCHERS
ACROSS THE COUNTRY.
THIS IS IS A CULMINATION OF FIVE
EVENTS, RETURNED VALUE IN THE
COMMUNITY.
AGAIN, NOT THINKING PEOPLE ARE
GOING TO READ OUR PUBLICATIONS
OR ATTEND CONFERENCES BUT GO
BACK TO PLACES WE COLLECTED DATA
AND TALK ABOUT VALUE AND IMPACT
OF THAT DATA.
I WANT TO MAKE SURE WE HAVE TIME
FOR SOME QUESTIONS SO I'LL END
THERE.
MANY OF YOU HAVE THE SLIDES.
THIS TALKS ABOUT SOME DATA THAT
WE RETURNED.
THIS IS ALSO SOME PARTICIPANTS,
YOU CAN LEARN MICHELLE'S STORY
AS A RETIRED NURSE TALKING TO
PHYSICIAN AND FAMILY ABOUT
PRECISION MEDICINE BECAUSE OF
THE VALUE SHE RECEIVED BACK.
HUGO CAMPOS TALKED ABOUT PRIOR
TO THE PROGRAM HE DIDN'T HAVE
THE TOOLS TO TALK TO HIS FAMILY
AND PROVIDER ABOUT THE
IMPORTANCE OF INFORMATION THAT
HE RECEIVED.
RESEARCH CURRENTLY TAKING PLACE,
ONE EXAMINING BURDEN OF
PSORIASIS AND ARTHRITIS IN THE'S
ADULT COHORT USING THE "ALL OF
US" DATASET, A TOPIC THAT WOULD
BE IMPORTANT TO THIS INSTITUTE
AND CENTER AND PARTNERS.
WE HAVE A RESEARCHERS LOOKING AT
FAMILY HISTORY OF ARTHRITIS,
OSTEOPOROSIS, CARPAL TUNNEL
SYNDROME, RISK AMONG U.S.
ADULTS.
ONE OF THE THINGS WE DO THROUGH
IGNITE, WE HIGHLIGHT STUDIES
LIKE THIS IN THE COMMUNITY AND
SAY BECAUSE OF YOUR DATA WE'RE
ABLE TO ASK QUESTIONS LIKE THIS
WITH A DIVERSE PATIENT
POPULATION THAT WE'VE NOT SEEN
IN GENOMIC AND PRECISION
MEDICINE RESEARCH.
THANK YOU FOR YOUR TIME AND THIS
OPPORTUNITY AND LOOK FORWARD TO
QUESTIONS AND DIALOGUE.
>> THE FLOOR IS OPEN FOR
QUESTIONS AND COMMENTS.
DR. WALKER, DO YOU WANT TO KICK
THINGS OFF?
ALL ARE WELCOME.
>> ARE THERE QUESTIONS ON THE
FLOOR FOR COUNCIL MEMBERS,
STAFF, ANYONE ONLINE?
OKAY.
, YEAH, GO AHEAD, ED.
>> THANK YOU SO MUCH FOR THE
PRESENTATIONS.
IT'S BEEN REALLY ENLIGHTENING
FOR ME AS SOMEONE WHOSE RESEARCH
BACKGROUND AND EARLY TRAINING IN
BIOMATERIALS AND REGENERATIVE
MEDICINE WAS DONE IN A WAY THAT
I WOULD SAY WAS PRETTY FAR
DISTANT FROM ANY TYPE OF DIRECT
INTERACTION WITH PATIENTS WHO
COULD BE IMPACTED BY THE SUCCESS
OF MY RESEARCH.
AND, YOU KNOW, IN THAT WAY, I'M
NOT SURE I THOUGHT OF MYSELF AS
A POTENTIAL REPRESENTATIVE OR
AMBASSADOR OF THE SCIENTIFIC
RESEARCH COMMUNITY.
BUT MORE RECENTLY, I'VE HAD
OPPORTUNITIES TO EXPAND THE
NATURE OF MY RESEARCH INTO AREAS
LIKE SICKLE CELL CELL, WHERE WE
HAVE MADE EFFORTS TO DEVELOP
PARTNERSHIPS WITH LOCAL
INSTITUTIONS LIKE SICKLE
FOUNDATION OF GEORGIA, THERE ARE
OCCASIONS WHERE WE DO NOW HAVE,
YOU KNOW, ABILITY AND
OPPORTUNITY TO INTERACT WITH
PATIENTS WHO ARE IMPACTED BY THE
DISEASES THAT WE ARE WORKING ON.
CONVERSATIONS LIKE THIS ONE
REMIND ME OF THIS IDEA THAT AS
I'VE GOTTEN TO KNOW PEOPLE IN
THE COURSE OF CONDUCTING
RESEARCH AND TRYING TO ESTABLISH
RESEARCH RELATIONSHIPS, I'VE
ALSO SEEN WHERE THAT TRUST
RELATIONSHIP KIND OF MAKES ME A
SOURCE OF INFORMATION, LET'S
SAY, WHEN SOME E-MAIL OR, YOU
KNOW, SOCIAL MEDIA POST IS GOING
AROUND ABOUT COVID
MISINFORMATION.
COVID VACCINE MISINFORMATION AS
AN EXAMPLE.
SO I BECOME A VOICE EVEN THOUGH
I'M NOT A VACCINE RESEARCHER OR
IMMUNOLOGIST FOR THAT MATTER
THAT SOME PEOPLE BEGIN TO TRUST
BECAUSE OF THE RELATIONSHIPS
THAT WE'VE BEGUN TO BUILD.
BUT SO I SUPPOSE MY -- AT LEAST
IN MY MIND THOUGH I STILL HAVE A
HARDER TIME THINKING OF -- THE
RESEARCH I DO IS PRETTY FAR
UPSTREAM OF PATIENT RESEARCH.
IT'S STILL VERY BASIC.
STILL INVOLVING, YOU KNOW, CELLS
AND MATERIALS AND ORGANOIDS AND
SUCH.
I'M CURIOUS TO HEAR ANY
PERSPECTIVES ON WHEN WE'RE
THINKING ABOUT COMMUNITY
ENGAGEMENT, YOU KNOW, HOW ARE
MORE BASIC RESEARCHES LIKE
MYSELF, ARE THEY REALLY PART OF
THIS BROADER EFFORT OR
INITIATIVE TO DO COMMUNITY
ENGAGEMENT?
YOU KNOW, I THINK FOR THE
MAJORITY OF MY CAREER I WOULD
HAVE NOT THOUGHT OF MYSELF IN
THAT WAY, BUT I WOULD JUST BE
INTERESTED TO HEAR MORE
PERSPECTIVES ON WHETHER OR NOT
ALL OF
ALL OF US DOING RESEARCH WITH
SUPPORT FROM NIAMS DO WE HAVE A
ROLE TO PLAY IN REPRESENTING THE
NIAMS WHEN OUTCOME IS FAR AWAY.
>> I'LL KICK OFF.
YAY, TEAM SCIENCE.
WHAT DO I MEAN BY THAT?
I USED TO BE THE A.D., ASSOCIATE
DIRECTOR FOR COMMUNITY FOR A
CANCER CENTER, THEY ARE REQUIRED
TO HAVE A.D.s.
PART OF MY JOB WAS TO ENSURE
RESEARCH THEY WERE DOING WAS
RESPONSIVE TO PEOPLE AND
PARTICIPANTS, THE CATCHMENT
AREA.
SOMETIMES I WOULD VISIT BASIC
SIGHS, I FEEL LIKE YOU'RE TRYING
TO TURN ME INTO A CANCER
DISPARITIES RESEARCH, NO, I'M
TRYING TO GET THE INFORMATION TO
MAKE SURE WE'RE DISSEMINATING IN
A WAY THAT OTHER COMMUNITY
MEMBERS KNOW ABOUT THE OUTCOME
OF THAT.
IT MAY NOT ALWAYS BE THAT
RESEARCHER DISSEMINATING THEIR
OWN FINDINGS BUT YOUR FINDINGS
NO MATTER WHERE THEY ARE ON THE
CONTINUUM OF TRANSLATIONAL
RESEARCH ARE IMPORTANT.
THE LAST THING I'LL SAY IS THE
POSHES OF TEAM SCIENCE.
NIMHD R01 I TALKED ABOUT, WE M A
MULTI-DISCIPLINE APPROACH.
I HAVE A BASIC SCIENTIST LOOKING
AT PROTEIN METHYLATION, NO IDEA
HOW TO GO INTO THE BARBER SHOPS,
NOR DO I WANT HER TO.
BUT HER WORK AT THE BASIC
SCIENCE LEVEL WAS SO IMPORTANT.
WE HAD AN EPIDEMIOLOGIST LOOKING
AT GIS AND NAKED IMPACT, AND HW
DO WE ENGAGE THE BARBERS?
WE EACH KNEW THE ROLE TO PLAY.
LOOKING AT RFAs,
MULTI-DISCIPLINARY APPROACH TO
KNOW WHAT ROLE YOU'LL PLAY IS
PART OF THE SHORT ANSWER I WOULD
GIVE ON THAT.
>> I CAN SEE STEVE AND EMILY
HAVE HANDS UP.
>> I WANTED TO ASK DR. HOOPER A
QUESTION.
YOU MENTIONED YOU LEARNED
TOP-DOWN COMMUNICATION WAS NOT
WORKING, CAN YOU GIVE AN
EXAMPLE?
I WANT YOU TO ELABORATE OF
THINGS IN THAT SPACEMENT.
>> THE TOP-DOWN MESSAGING, SINCE
WE'VE BEEN TALKING ABOUT
COVID-19, THOSE ARE EXAMPLES.
PRESS CONFERENCES, PUBLIC HEALTH
LEADERS, GOVERNMENT OFFICIALS
TELLING THE PUBLIC WHAT NEEDS TO
HAPPEN AND THEN WHEN THOSE
MESSAGES CHANGED, NOT
COMMUNICATING IN A WAY THAT WAS
EFFECTIVE OVERALL.
WE COULD MOSTLY AGREE ON THAT.
THAT'S TOP-DOWN COMMUNICATION.
WHEN IT'S THE INVESTIGATORS SORT
OF FIXING A COMMUNITY OR TELLING
PEOPLE WHAT THEY NEED TO DO,
WITHOUT SEEKING THEIR INPUT,
WITHOUT CONSIDERING THE
HETEROGENEITY WITHIN ANY
COMMUNITY, WITHOUT ENSURING THAT
THEIR MESSAGES AND APPROACHES
ARE CULTURALLY APPROPRIATE AND
RESONANT, THAT'S WHAT I MEAN BY
NOT BEING EFFECTIVE IF IT'S JUST
TOP-DOWN.
>> I WAS EXCITED BY ALL THE
PRESENTATIONS.
DR. WATSON, I GOT AN
ADMINISTRATIVE SUPPLEMENT, SENT
ME DOWN THIS AVENUE AS WELL.
NOW I'M REALLY TRYING TO ENGAGE
IN MORE PATIENT ADVOCATE,
PATIENT CAREGIVER SINCE I'M IN A
PEDIATRIC HOSPITAL PARTNERSHIP.
I FEEL LIKE THERE'S BARRIERS,
YOU MENTIONED IT TOOK FIVE
YEARS, TO ME I'M JUST LIKE HOW
DO WE BUILD THOSE RELATIONSHIPS
AND WHAT DO I DO TO SUPPORT THE
EFFORTS ONCE TRUST GETS GOING,
MAINTAIN THE TRUST, CURIOUS WHAT
CAN ONE DO TO HAVE RESOURCES TO
GET INTO THE COMMUNITY AND MAYBE
NOT SHOW THEM A LOT OF THAT
RECRUITMENT WHICH SHOULDN'T BE
NECESSARILY THE METRIC BUT
REALLY BUILDING THAT TRUST SEE
THAT SOME OF THIS MORE
MEANINGFUL RELATIONSHIP COULD
HAPPEN IN THE LONG RUN.
>> THANK YOU FOR THAT QUESTION.
ONE OF THE THINGS, YES, IT TOOK
US FIVE YEARS.
THE RESOURCES WERE SUPPORTIVE OF
THAT.
INVESTIGATORS, THE TEAM WASN'T
PENALIZED FOR TAKING THAT FIVE
YEARS TO BUILD THAT TRUST.
BUT WHEN I WAS IN THE ACADEMIA I
KNOW I WOULDN'T ALWAYS HAVE THAT
LUXURY.
PROMOTION AND TENURE WAS
IMPACTED BECAUSE I DID COMMUNITY
ENGAGED RESEARCH.
I HAD TO LEARN TO DIVERSITY MY
FUNDING PORTFOLIO, WHEN I HAD
COMMUNITY PARTNERS THAT NEEDED
RESOURCES, DIRECT SERVICES, THAT
WAS THE OPPORTUNITY TO THINK
ABOUT FUNDING LIKE THAT WAS
INTEGRATED WITH MY WORK BUT THAT
WAS DIFFERENT, RIGHT?
ONE OF THE COMMUNITY I WORKED
WITH NEEDED MAMMOGRAPHY
SCREENING, FUNDING FROM CDC TO
IMPLEMENT.
THAT WASN'T RESERVE, THAT WAS A
SERVICE BASED GRANT.
WE GOT FUNDING FROM PCORI TO
BUILD CAPACITY.
I ADDRESSED DIFFERENT NEEDS,
UNDERSTANDING THE NIH FUNDING
FOCUS WAS FOR RESEARCH.
THEN WE APPLIED.
EARLY STAGE INVESTIGATOR, IT'S
REALLY IMPORTANT TO KNOW WHICH
IS THE BEST FUNDING STREAM FOR
YOU TO UTILIZE TO ADDRESS A NEED
THAT A COMMUNITY MAY HAVE.
>> JINOOS?
>> THANK YOU.
I ENJOYED YOUR PRESENTATIONS.
SO, THIS IS A QUESTION MAYBE FOR
THE "ALL OF US" RESEARCH
PROGRAM.
HOW DO YOU MEASURE THE SUCCESS
OF COMMUNITY ENGAGEMENT BESIDES
RECRUITMENT NUMBERS?
ARE THERE LIKE BIOMARKERS, LIKE
PRECURSORS THAT COME BEFORE THE
ACTUAL ENROLLMENT?
>> YES, ONE OF THE THINGS, I
INTRODUCED A TERM TO
GENETICISTS, MIXED METHODS
RESEARCH.
I'M GOING TO HAVE TO DO FOCUS
GROUPS TO HEAR FROM THEM ABOUT
OUR IMPACT OF OUR ENGAGEMENT
OUTCOMES.
AND SO ONE OF THE WAYS WE
MEASURED IS THAT I TOLD MY PEERS
WE'RE NOT GOING TO ALWAYS HAVE A
BIOLOGICAL OUTCOME, IF YOU WILL,
THAT DETERMINES OUR ENGAGEMENT
WAS EFFECTIVE.
WE CAN GO BACK TO PARTICIPANTS
AND SAY DID THE WAY WE RETURNED
YOUR RESULTS, WERE WE EFFECTIVE,
WHAT ARE WAYS YOU WOULD WANT TO
BE ENGAGED HOW WE DEVELOP
ANCILLARY STUDIES, PARTNER
COLLABORATIVE STUDIES, THAT'S A
LOT OF WORK THAT DIDN'T HAPPEN
THROUGH TRADITIONAL SURVEY DATA,
QUANTITATIVE DATA.
IT CAME FROM US GOING IN THE
FIELD AND HAVING QUALITATIVE
CONVERSATIONS WITH OUR
PARTICIPANTS AND COMMUNITY
MEMBERS TO SEE ARE WE EFFECTIVE
IN ENGAGEMENT WORK WE'RE DOING
AS ONE EXAMPLE.
PUBLISHING ON THAT WORK SO
OTHERS COULD DUPLICATE IT.
>> I REALLY ENJOYED THE
PRESENTATIONS, THANKS SO MUCH,
THANKS TO DR. WALKER AND OTHERS
THAT HELPED ORGANIZED.
ONE QUESTION GOING THROUGH MY
MIND IS A PRACTICAL ONE.
WE UNDERSTAND BETTER THAN BEFORE
HOW THE EXTENT TO WHICH
COMMUNITY ENGAGEMENT IS
RECOGNIZED BEING IMPORTANT AND
IMPACTFUL.
WE CAN SEE EXAMPLES OF HIGHLY
SUCCESSFUL COMMUNITY ENGAGEMENT
AND RESEARCH, WE'VE HEARD ABOUT
CEAL, ABOUT COMPASS.
BUT FOR THE RESEARCHER, YOU'VE
SEEN EXAMPLES OF THIS FROM THE
QUESTIONS, THIS IS SOMETHING
THEY FEEL OBLIGED TO THINK
ABOUT, IT'S GOING TO TRANSLATE
INTO BETTER IMPACT OF RESEARCH,
POSSIBLY BETTER RECRUITMENT DOWN
THE LINE BUT WHERE DO THEY GO
FOR VERY BASIC STEP-BY-STEP
GUIDANCE HERE, IS THERE A
DASHBOARD, A FRONT DOOR, ONE
PLACE THEY CAN FIELD QUESTIONS
LIKE WE'VE BEEN HEARING HERE
TODAY?
WE HAVE EMILY AND OTHERS
THINKING ABOUT THEIR RESEARCH
PROJECT, THE PRIVILEGE OF
INTERACTING BUT HOW CAN WE HELP
THE BROADER COMMUNITY, TAKE SOME
FIRST STEPS TO COMMUNITY
ENGAGEMENT?
>> THERE'S A NUMBER OF AMAZING
COMMUNITY ENGAGED RESEARCHERS
OUT THERE SO NETWORKING.
LOOKING IN LITERATURE TO SEE WHO
IS DOING THIS WORK AND MAKING
CONNECTIONS, LEARNING FROM THEM.
I THINK THAT'S A POWERFUL MODEL.
I THINK MY TALK WAS FOCUSED ON
RESPONSIBILITY OF THOSE FUNDERS,
WHAT CAN WE DO.
SO I THINK WE HAVE A REALLY
IMPORTANT ROLE TO PLAY IN TERMS
OF CREATING OPPORTUNITIES FOR
TRAINING AND LEARNING, AND SO
THERE ARE PROGRAMS OUT THERE
THAT YOU CAN FIND.
AGAIN, FROM PLY PERSPECTIVE I'M
ENCOURAGING US TO CONTINUE TO
THINK ABOUT WAYS TO EXPAND THOSE
OPPORTUNITIES.
>> ONE IMPORTANT RESOURCE THE
INITIATIVE DEVELOPED, CEAL IS
THE COMMUNITY ENGAGEMENT
ALLIANCE, ON THE CEAL WEBSITE,
ONE RESOURCE IS THE CEAL
CONSULTATIVE RESOURCE.
IT'S FOR THIS EXACT PURPOSE,
RESEARCHERS INTERESTED AND NOT
KNOWING EXACTLY HOW TO BEGIN,
THEY CAN WORK WITH EXPERTS AND
HELP THEM WALK THROUGH STEP BY
STEP IN A CONSULTATIVE FASHION
TO MOVE FORWARD WHATEVER GOALS
THEY HAVE IN COMMUNITY ENGAGED
RESEARCH.
THE GOAL WAS TO HAVE THIS
RESOURCE TO BE REPEATABLE AND TO
BE ACCESSIBLE TO PEOPLE AND THEY
HAVE CONDUCTED A NUMBER OF
CONSULTATIONS SINCE THE PROGRAM
STARTED A FEW YEARS AGO, AND
IT'S GOT REALLY FABULOUS
EVALUATION SO I THINK THEY ARE
DOING A GOOD JOB.
IT'S A RESOURCE FOR THE
COMMUNITY.
>> ANOTHER RESOURCE IS ALSO
LOOKING AT NIH PARTNERS PARTNERS
AND COMMUNITY ENGAGED TOOLS ON
THEIR WEBSITE.
I RECENTLY REFERRED A PARTNER TO
THE CTSA, AT THEIR INSTITUTION.
I SAID BEFORE "ALL OF US" WAS
FUNDING I COMMUNED OUR COMMUNITY
ADVISORY BOARD AT OUR
INSTITUTION FUNDED BY THE CTSA
TO SAY, HEY, THIS PROJECT IS
ABOUT TO COME OUT, AND I GOT ON
THE AGENDA BECAUSE AT THE TIME
OUR CTSA HAVE AN ADVISORY PANEL
TO PRESENT RESEARCH IDEAS TO.
ARE THERE OTHER RESOURCES FUNDED
FOR CONSULTATIVE PROCESS?
COMPASS IS DOING TECHNICAL
ASSISTANCE WEBINARS, COMMON
FUND, LOOKING AT NIH RESOURCES
WHO IS FUNDED TO OF LIKE THE
CTSA, MOST HAVE CONSULTATIVE
SERVICES TO PROVIDE
INVESTIGATORS FROM BASIC TO
POPULATION HEALTH TO COMMUNITY
ENGAGED RESEARCHERS.
>> WE'LL FINISH WITH DOUG FOR
THE LAST QUESTION.
>> TO I WAS WOUND OF OF OF OF --
I WAS WOUND ERIC IF -- WOUND -
-
WONDERING IF THE SITES, COULD
PEOPLE PARTNER WITH THEM?
>> IT'S SOMETHING WE'RE
ENCOURAGING MORE OF, CROSS-TALK
BETWEEN AWARDEES.
WE MEET MONTHLY.
WE MEET MONTHLY WITH THEM.
EACH PARTNER HIGHLIGHTS BEST
PRACTICES FOR WHAT THEY ARE
DOING IN A PARTICULAR COMMUNITY
AND WE BRING IMPLEMENTATION
SCIENCE LENS TO SEE HOW IS THIS
SCALABLE AND HOW CAN YOU
IMPLEMENT IN OTHER POPULATIONS,
HOW CAN IT BE ADAPTED BUT WE'RE
ENCOURAGING THAT.
>> THIS CONCLUDES OUR SESSION ON
COMMUNITY ENGAGEMENT.
WE THANK OUR GUEST PRESENTERS.
FANTASTIC, FANTASTIC
INFORMATION.
ISLAND DO A WARM HAND OFF BACK
TO YOU, DARREN.
>> THAT'S TERRIFIC.
THANK YOU FOR JOINING US.
>> I CAN STAY AROUND AND LISTEN
TO THE CONCEPT CLEARANCE.
YOU DON'T HAVE TO LEAVE.
>> STILL OPEN SESSION.
IF WE COULD PUT THAT SLIDE UP
FOR -- SO LET ME START OUT, YOU
CAN SHARE THAT SLIDE.
JUST REMIND FOLKS WHAT OUR
CONCEPT CLEARANCE PROCESS IS,
WHY WE DO IT.
STAFF HERE AT NIAMS WORK TO
IDENTIFY CRITICAL RESEARCH
OPPORTUNITIES AND NEEDS WITHIN
OUR MISSION AREA.
AND WE ASK OUR PROGRAM OFFICERS
FOR IDEAS TO RECOMMEND CONCEPTS,
THINGS WE SHOULD CONSIDER FOR A
VARIETY OF USES.
AND THESE CONCEPTS WILL DESCRIBE
BASIC PURPOSE, SCOPE,
OBJECTIVES, VERY HIGH LEVEL, NOT
DIGGING DEEP INTO A SPECIFIC
FUNDING OPPORTUNITY, FOR
INSTANCE.
THIS PROCESS, THIS CONCEPT
CLEARANCE PROCESS IS A PLANNING
PROCESS WHERE WE RECEIVE PUBLIC
ADVICE, THIS IS A PUBLIC --
PUBLICLY SHOWN.
INPUT ON THE MERITS OF THE
PROPOSED CONCEPT AS WELL AS
ADVICE FROM COUNCIL, THINGS TO
KEEP IN MIND AS WE MOVE FORWARD
WITH CONCEPTS.
THESE WILL BE PUBLISHED ON OUR
WEBSITES, INFORM RESEARCHERS
ABOUT OUR INTEREST AND IDEAS,
PREPARE THEM IN CASE WE COME OUT
WITH SOME FUNDING OPPORTUNITIES.
SO WE DO HAVE ONE CONCEPT, THIS
IS GOING TO BE A RENEWAL.
I'LL PASS THIS OVER TO DR. GAYLE
LESTER, DIRECTOR OF OUR DIVISION
OF EXTRAMURAL RESEARCH.
PROGRAM OFFICER, IS GOING TO
GIVE A BACKGROUND ON THIS
CONCEPT AND LEAD THE DISCUSSION
OF THIS CONCEPT.
>> THIS IS A RENEWAL OF AN
ACTIVITY THAT HAS BEEN CARRIED
OUT FOR A NUMBER OF YEARS AT
NIAMS.
AND DR. MAO WILL GIVE A REVIEW
OF WHAT WE HAVE LEARNED FROM
THIS MECHANISM AND WE WOULD LIKE
TO HAVE YOU CONSIDER RENEWING
THIS MECHANISM FOR ANOTHER FIVE
YEARS.
>> THANKS, GAYLE.
SO, I WANT TO PROVIDE A BRIEF
INTRODUCTION TO THE NIAMS SMALL
GRANT PROGRAM, R03.
SO, THIS PROGRAM WAS INSPIRED BY
EARLY ANALYSIS THAT SHOWED THE
INVESTIGATORS WITH K AWARDS
COMBINING WITH FOUNDATION
SUPPORT DO BETTER IN APPLYING
FOR THEIR R01 APPLICATION.
SO, THE GOAL OF THE PROGRAMS IS
TO SUPPORT EARLY-STAGE
INVESTIGATORS, TO DEVELOP
PRELIMINARY DATA FOR THEIR FIRST
R01 APPLICATION.
AND TRANSITION TO INDEPENDENT
RESEARCH.
THE PROGRAM WAS INITIALLY
DEVELOPED FOR K08 AND K23
AWARDEES, HAS BEEN RECENTLY
UPDATED TO INCLUDE K 01 AND K25
AS WELL, IT PAYS UP TO $50,000
PER YEAR, FOR TWO YEARS.
NEXT SLIDE PLEASE.
SOME EXAMPLES OF PROJECTS THAT
ARE SUITABLE FOR R03 INCLUDE
PILOT AND FEASIBILITY STUDIES,
SECONDARY ANALYSIS OF EXISTING
DATA, SMALL SELF-CONTAINED
RESEARCH PROJECTS, AND
DEVELOPMENT OF RESEARCH
METHODOLOGY OR RESEARCH
TECHNOLOGY.
NEXT.
THE R03 AIMS TO INCREASE FISCAL
INDEPENDENCE OF INVESTIGATORS
AND TO PROVIDE AN OPPORTUNITY TO
GENERATE ADDITIONAL PUBLICATIONS
AND DATA TO SUPPORT A SUBSEQUENT
R01 APPLICATION.
ALSO TO DEMONSTRATE AWARDEES
ADDITIONAL SUCCESS IN THE PEER
REVIEW PROCESS.
NEXT.
THESE ARE THE PAST AND CURRENT
FUNDING OPPORTUNITIES FOR THE
NIAMS R03 PROGRAM.
I'LL STOP HERE.
I'LL HAND IT BACK TO DR. LESTER.
>> THANK YOU, SUE.
THAT WAS REALLY HELPFUL.
I'D LIKE TO OPEN FOR QUESTIONS
FROM THE COUNCIL MEMBERS.
>> I THINK THE GRANTS ARE SUPER
IMPORTANT.
THEY HELP YOUNG INVESTIGATORS.
I DON'T KNOW IF YOU WOULD EVER
CONSIDER IT BUT WOULD YOU
CONSIDER PEOPLE WHO -- I'M ON
THE BOARD OF DIRECTORS FOR
MUSCULAR DYSTROPHY, WE GIVE
DEVELOPMENT AWARDS TO PEOPLE.
WOULD YOU CONSIDER ALLOWING
INDIVIDUALS LIKE THAT TO
POTENTIALLY QUALIFY FOR IT?
THEY ARE CAREER AWARDS.
VERY MODEST AMOUNT OF MONEY.
NOT A LOT BUT ADDING AN R03
WOULD REALLY ENABLE THOSE.
MDA GIVES A VERY SMALL NUMBER
EVERY YEAR, I'M SURE OTHER
FOUNDATIONS HAVE THOSE, WITH YOU
BEEN MISSION THAT MIGHT MAKE
SENSE.
>> WE MIGHT DISCUSS THAT BUT I
THINK FOR THIS PARTICULAR
RENEWAL WE WOULD PROBABLY NEED A
LITTLE MORE INVESTIGATION INTO
WHAT AGENCIES HAVE THESE SMALL
AWARDS AND HAVE FELLOWSHIPS AND
HAVE CANDIDATES WHO WOULD BE
ELIGIBLE.
THE BURDEN, YOU KNOW, WE HAVE
DONE R03s IN THE PAST, VERY
BROADLY TO THE COMMUNITY, AND
THE BURDEN IS HUGE.
IF YOU DO THAT.
THEY ARE VERY SMALL AWARDS BUT
HUNDREDS AND HUNDREDS OF PEOPLE
APPLY.
SO, WE HAVE TO BE CAREFUL OF OUR
BUDGETARY -- THE BUDGETARY
CONSEQUENCES.
BUT I THINK IT WOULD BE WORTH
LOOKING INTO VERY MUCH.
>> I CAN SEND INFORMATION ABOUT
THE PROGRAM.
IT'S A VERY SMALL NUMBER OF
PEOPLE THAT GET IT PER YEAR.
SO NOT GOING TO MAKE A BIG DENT.
>> I'M SURE YOUR PROGRAM
WOULDN'T.
BUT IF THERE THERE THREE OR FOUR
OTHER GROUPS WITH SIMILAR ONES
WE WANT TO ALLOW --
>> TRANSITION TO INDEPENDENCE
AWARDS.
>> RIGHT.
THANK YOU VERY MUCH.
>> THANK YOU.
I THINK THIS IS REALLY A NICE
MECHANISM TO HELP THOSE YOUNG
INVESTIGATORS TO ESTABLISH
INDEPENDENCE.
MY QUESTION IS HOW STRICT
ACCESSIBILITY YOU WILL HAVE WHEN
THEY PUT IN THIS PROPOSAL
REGARDING THE PREVIOUS CYCLE,
THE K GRANTS, ORIGINAL PROPOSAL,
MEANING IT SHOULD BE STRICT,
WITHIN THE SCOPE OF THE RESEARCH
PRODUCT, OR NO, IT IS LONGER WAY
TO HELP THEM DEVELOP CAREERS.
>> RIGHT.
IT'S BROADER THAN THE SCOPE OF
THEIR ORIGINAL TRAINING GRANT.
IN ORDER TO ALLOW THEM TO
DEVELOP THEIR CAREER AND THEIR
CAREER PATHWAYS.
>> GREAT.
THANK YOU.
>> I WOULD SAY IT SHOULD BE
OUTSIDE THE SCOPE BECAUSE YOU
DON'T WANT TO BE FUNDING THE
SAME RESEARCH TWICE, IT SHOULD
BE DIFFERENT, A BIT, AT LEAST.
THAT'S ALWAYS TRICKY.
>> THANK YOU.
>> ONE IMPORTANT ASPECT OF K
AWARDEE, DURING THEIR CAREER
DEVELOPMENT, DEVELOP IDEAS THAT
WOULD BRANCH OUT FROM THEIR
CAREER DEVELOPMENT PROJECT.
R03 WOULD BE OPEN TO ANY PILOT
AND FEASIBILITY STUDY, FOR IDEAS
THAT THEY DEVELOP ON THEIR OWN.
>> THE REMEMBER THE ORIGIN THEY
HAVE CONCEPT WITH THE FOUNDATION
AWARDEES ALWAYS SEEMING TO DO
BET OTHER R01S, IT MADE PERFECT
SENSE AT THE TIME.
WONDERING SINCE THIS IS A
RENEWAL, HAVE YOU TRACKED YOUR
PREVIOUS AWARDEES TO SEE IF IT'S
COMPARABLE TO THE FOUNDATION
SUPPLEMENTS THAT SOME AWARDEES
GOT?
>> I DON'T THINK WE'VE TRACKED
RELATIVE TO THOSE SUPPLEMENTS
BECAUSE WE DON'T ALWAYS KNOW WHO
GETS THOSE, OF OUR K AWARDEES.
>> THE R03s I MEAN.
>> WE'VE TRACKED R03 SUCCESS.
WE CAN'T DO A RELATIVE
COMPARISON BUT SUE HAS SOME DATA
ON THAT?
>> THAT WOULD BE FOR ANOTHER
TIME, IF WE WANT TO DISCUSS
OUTCOME OF THE R03 PROGRAM.
>> SO MORE TO COME.
WE DO FEEL THESE HAVE BEEN
SUCCESSFUL IN THAT THE AWARDEES
HAVE GONE ON TO GET THEIR R01
AWARDED.
WHETHER IT'S QUICKER THAN NOT
HAVING HAD IT OR WHETHER IT'S,
YOU KNOW, MORE SUCCESSFUL IN THE
LONG RUN, WE HAVEN'T HAD ENOUGH
TIME TO REALLY EVALUATE THAT
YET.
>> I WANT TO ADD, WE'RE DEEPLY
COMMITTED TO EVALUATING THE
OUTCOMES OF ALL OF THE FUNDING
MECHANIC ISMS, WE'VE HAD
DISCUSSIONS ABOUT OUTCOMES RO3
APPLICATIONS, WANT TO DO MORE
ANALYSIS BUT I DON'T WANT TO
LEAVE YOU WITH THE SUGGESTION
WE'RE NOT TRACK THAT CAN AND
TRYING TO UNDERSTAND THAT AS
WELL AS WE CAN SO THAT EVERY
DOLLAR WE SPEND WE FEEL
CONFIDENT ABOUT HOW WE'RE
INVESTING THOSE DOLLARS.
SO REALLY IMPORTANT QUESTION, AS
WAS THE SUGGESTION OVER HERE
THAT WE WILL DEFINITELY
CONSIDER.
THAT'S COME UP BEFORE.
YEAH, WE APPRECIATE HEARING THAT
FROM YOU AS WELL.
>> OKAY.
>> SORRY.
>> I HAD A QUESTION.
WITH THE SMALL GRANT PROGRAM
CURRENTLY, YOU ARE ELIGIBLE
YEARS 2 THROUGH 4, CURIOUS ABOUT
IF THERE'S BEEN ANY WORK TO
UNDERSTAND LIKE HOW THAT TIMING
WORKS OUT.
I CAN UNDERSTAND THE RATIONALE
TO ENCOURAGE AWARDEES TO APPLY
WHILE STILL WITH THE K, TIME FOR
DIFFERENT PACE, WHAT THEY ARE
EXCUSING TOKING SUCCESSFUL IN
THE K, CAN SOMETIMES DICTATE THE
TIME THEY SPEND TOWARDS GRAND
--
GRANT WRITING AND OTHER
DEVELOPMENT, SO COMMENTS ON
THAT.
>> WE DID OBSERVE A TREND THAT
THE K AWARDEES TEND TO APPLY FOR
R03 TOWARDS THE END OF THAT
FOURTH YEAR.
I THINK YOU CAN IMAGINE THAT
WHEN THEY JUST STARTED THE K
AWARDS THEY ARE BUSY LAUNCHING
THEIR PROJECTS.
WE DID OBSERVE THAT TREND.
THE REASON WHY WE WANTED TO
LIMIT THIS TIME WINDOW IS THAT
WE DON'T WANT THAT K AWARDEES
NECESSARILY TO APPLY FOR R03 AND
PROLONG THAT WINDOW BEFORE THEY
APPLY FOR R01.
SO THAT'S WHY WE WANTED TO HAVE
IT COINCIDE WITH K AWARDS, AND
WITH THE ADDITIONAL SUPPORT FOR
HIRING TECHNICIAN OR STUDY
COORDINATORS CAN HELP LAUNCHING
THEIR R01 APPLICATION FASTER.
>> I THINK THIS IS ALSO WHERE
THE BRIDGE AWARDS THAT MANY
FOUNDATIONS OFFER LIKE THE
RESEARCH FOUNDATION ARE
CRITICALLY IMPORTANT FOR SOME
ISSUES YOU RAISE.
I SEE HANDS UP FROM TEO AND
EMILY.
>> I THINK IT'S A REALLY
IMPORTANT AWARD.
I ALSO SECOND WHAT BETH
MENTIONED IN TERMS OF IF IT IS
POSSIBLE IN THE FUTURE TO ALSO
ALLOW TRAINEES WITH FOUNDATION
ORGANIZATION GRANTS TO APPLY AS
WELL.
MY QUICK QUESTION WAS HOW MANY
OF THESE AWARDS DO YOU USUALLY
GIVE OUT YEAR, SEEMS LIKE ONE
THAT MAY HAVE A BROAD AND
SIGNIFICANT IMPACT, NICE TO SEE
IN FUTURE MEETINGS REPORTED ON.
THANK YOU.
>> I THINK WE CAN PROVIDE THAT
FOR YOU.
I DON'T KNOW THAT WE HAVE THAT
RIGHT AWAY BUT COULD MAKE THAT
AVAILABLE MAYBE MORE IN DEPTH
PRESENTATION AND DO SOME
SLEUTHING AROUND TO SEE WHAT WE
CAN FIND OUT ABOUT WHAT OTHER
FOUNDATIONS OR ORGANIZATIONS
HAVE THESE TRAINING AWARDS THAT
THESE COULD BE POTENTIALLY
ELIGIBLE FOR THIS TYPE OF SMALL
GRANT.
>> THANK YOU, TEO.
EMILY?
>> THANK YOU SO MUCH.
AS SOMEONE WHO IN HER FIFTH YEAR
OF K23, I'M OUTSIDE THE WINDOW
NOW BUT I THINK IT'S A GREAT
MECHANISM, IT'S REALLY HELPFUL
TO SUPPORT EARLY CAREER
RESEARCHERS, BECAUSE THE K
BUDGET IS SO LIMITED THAT IT CAN
BE VERY HELPFUL TO EXPAND UPON
THE WORK THAT CAN BE DONE TO
MAKE A STRONGER R01 APPLICATION.
I THINK THERE COULD BE BETTER
ADVERTISING ABOUT THIS TOO TO K
AWARDEES.
I THINK I CAME ACROSS IT LATER
THAN I WANTED TO IN THAT SO I
THINK JUST LOOKING AT THE
DISSEMINATION OF, YOU KNOW, HOW
MANY HAVE BEEN APPLIED FOR, HOW
MANY K APPLICANTS COULD HAVE
BEEN ELIGIBLE, IS THERE
COMMUNICATION BARRIERS TO THAT.
AS WELL AS LOOKING AT THAT TWO
TO FOUR YEAR RANGE.
I'M HAPPY TO APPROVE IT NOW
BECAUSE WHATEVER SUPPORT WE CAN
HAVE TO K AWARDEES WOULD BE
GREAT BUT WE DON'T NECESSARILY
GET OUR R01 IN THE FIRST
SUBMISSION AND SOMETIMES IT
TAKES A COUPLE SUBMISSIONS,
SOMETIMES IT TAKES A LITTLE BIT
MORE PRELIMINARY RESEARCH AND
EVIDENCE, CURIOUS IF THERE'S A
CONVERSATION THAT FIFTH YEAR
FOLKS MIGHT BE ELIGIBLE KNOWING
IT MIGHT TAKE A COUPLE TRIES TO
GET THAT FIRST R01.
>> THESE ARE REALLY GREAT
SUGGESTIONS.
BY THE WAY, MY RECOLLECTION IS
THE SUCCESS OF SUCCESS RATE IS
QUITE HIGH TOO, ANOTHER REASON
WHY WE WANT TO MAKE SURE
EVERYONE IS AWARE.
BUT MAKING SURE WE'RE USING
FUNDS IN THE BEST POSSIBLE WAY,
WHETHER THAT MEANS EXTENDING
ELIGIBILITY CRITERIA, ET CETERA,
IS REALLY IMPORTANT.
AND ONCE AGAIN THIS IS A VERY
GENERAL CONCEPT CLEARANCE
PROCESS.
THERE'S OPPORTUNITIES FOR US TO
REFINE THE PROGRAM MOVING
FORWARD.
OTHERS COMMENTS AND SUGGESTIONS
ABOUT THIS?
>> SEEING NONE, I'M GOING TO
CALL FOR A VOTE.
WOULD SOMEBODY LIKE TO MOVE THAT
WE ACCEPT THIS CONCEPT FOR
FURTHER DEVELOPMENT?
THANK YOU.
A SECOND?
OKAY.
I'M GOING ASK FOR VOTES FROM
FOLKS WHO DISAPPROVE OF US
MOVING FORWARD WITH THIS.
JUST USUALLY MAKES THE VOTING
EASIER TO TRACK.
DOES ANYBODY NOT APPROVE OF US
MOVING FORWARD WITH THIS
CONCEPT?
SEEING NONE, IT'S UNANIMOUSLY
APPROVED.
THANK YOU VERY MUCH.
>> THANK YOU ALL.
>> THANK YOU.
SO, WE WANT TO GIVE FOLKS A
BRIEF BREAK BEFORE CLOSED
SESSION, BUT WE HAVE SOME TIME,
MAYBE FIVE OR TEN MINUTES, FOR
ANY OTHER ISSUES, QUESTIONS,
SUGGESTIONS, TOPICS FOR FUTURE
MEETINGS THAT YOU'D LIKE TO
SHARE AT THIS POINT OF TIME
DURING OPEN SESSION.
LOUISE, GREAT.
>> YES, A COMMENT I DIDN'T GET A
CHANCE TO MAKE EARLIER,
RETURNING TO POSTDOCTORAL
RECOMMENDATIONS, COMMENT IN
SUPPORT OF RECOMMENDATION THAT
PROFESSIONAL DEVELOPMENT
TRAINING FOR MENTORS AND THE
TRAINEES ARE INCLUDED, I'VE HAD
A NIAMS F32 AND HAVE DEVELOPED
CURRENTLY K23, HAVE CO-DEVELOPED
TRAINING WITH MENTORS.
A LOT OF EVALUATION, IT'S BEEN
MADE CLEAR, SUMMARY STATEMENTS
AND REVIEWS THAT HAVE COME BACK,
FOR THE MENTORS, ABOUT SUCCESS.
WITH GRANT FUNDING AND PRIOR
TRAINEES, AND VERY LITTLE
REGARDING LIKE SUCCESSFUL
MENTORING OR THE DESIRE TO BE
BETTER MENTOR POTENTIALLY AND
PROFESSIONAL DEVELOPMENT WAY,
AND SO I REALLY WAS SURPRISED
AND REALLY SUPPORT THE INCLUSION
OF MAYBE, YOU KNOW, FOCUS WITHIN
PROPOSALS ON HOW THE MENTORS
ALSO IN TURN SUPPORT THE
TRAINEE.
>> THANK YOU VERY MUCH.
RELATED TO THAT, I THINK AT
LEAST IN MY MIND IS THE ISSUE OF
THERE'S NOT SIMPLY ONE CAREER
PATH OR TRAJECTORY THAT WE ALL
SHOULD BE TRYING TO FOLLOW FOLKS
DOWN.
EVERY INDIVIDUAL MENTOR HAS
THEIR OPEN EXPERIENCE AND MAYBE
LIMITED UNDERSTANDING OF OTHER
CAREER OPPORTUNITIES.
INCREASINGLY THERE'S BEEN
ENCOURAGEMENT OF TEAM OFFERS,
MAYBE TECHNICAL MENTOR, CAREER
MENTOR AND ADVISER.
AS WE APPROPRIATELY CONSIDER
BROADER RANGE OF CAREER PATH FOR
FOLKS THAT ENTER IN TO THE
POSTDOC POSITIONS WE HAVE TO
MAKE SURE THROUGH MENTORING
OPPORTUNITIES AND TRAINING AND
EXPOSURE OF THE MENTORS AS WELL
AS TRAINEES THAT WE MAKE SURE
THAT THEY BECOME AWARE OF OTHER
OPPORTUNITIES.
SO THAT'S PART OF THE BIG IMPACT
OF SOME RECOMMENDATIONS, WE NEED
TO RETHINK HOW WE'VE BEEN DOING
BUSINESS ON THESE FRONTS.
ONE QUESTION IS OPPORTUNITIES --
OH, PLEASE, YEAH.
>> AS THE TRAINING DIRECTOR,
ACTUALLY THERE'S BEEN A LOT OF
POSITIVE MOVEMENT ACROSS THE NIH
FOR THIS.
IF YOU THINK OF THE SIMPLIFYING
REVIEW FRAMEWORK COMING OUT,
EVERYONE BE AWARE THAT'S
HAPPENING TO BOTH R01s BUT
ESPECIALLY Fs.
Fs NOW HAVE MORE EMPHASIS ON
THE TRAINING ASPECTS AND HOW
THAT MENTOR IS ACTUALLY ADAPTING
THE TRAINING PLAN TO THE MENTEE
AND PUTTING EMPHASIS LESS ON
JUST THINKING OF TRAINEE AS A
PRODUCER OF SCIENCE AND MORE OF
A TRUE TRAINEE.
ALSO THE SAME THING IS GOING TO
HAPPEN TO T32s.
THERE HAVE BEEN CHANGES IN
T32s, NOTING A DRAMATIC BUT
NOW MOVING THE EMPHASIS MORE
TOWARDS THE POSITIVE MENTORSHIP
AND HAVING CONSEQUENCE TO
MENTORSHIP SHOWING -- AND KIND
OF GIVING BONUS TO PROGRAMS THAT
ACTUALLY HAVE THAT EMPHASIS.
ENSURING THE MENTORS GO THROUGH
A LOT OF MENTOR TRAINING.
THAT'S A REALLY KEY PART OF IT.
I CAME FROM NIGMS, I'M GOING
TO -- HOPEFULLY EMPHASIZING THAT
IN STUFF I'LL BE REACHING OUT TO
T32 DIRECTORS ABOUT, BUT YES.
>> AS A REMINDER ONE OF THE
ROPES WHY WE WANTED TO RAISE
THIS ISSUE AT THIS COUNCIL
MEETING IS THAT THERE'S REQUEST
FOR INFORMATION FOR PEOPLE FROM
ALL BACKGROUNDS, ALL CAREER
STAGES, ALL PERSPECTIVES TO
COMMENT ON SOME OF THE
RECOMMENDATIONS IN THESE AREAS
SO PLEASE, THOSE THAT HAVE
THOUGHTS ABOUT THIS, GET YOUR
COMMENTS IN THERE IN WRITING
THROUGH THAT RFI MECHANISM.
YOU HAVE THE SLIDES IN YOUR ECB,
YOU SHOULD BE ABLE TO SEE WHERE
THAT REQUEST FOR INFORMATION
SITS.
AIMEE, DID YOU WANT TO COMMENT?
>> I'M IN SUPPORT OF MENTOR
TRAINING BUT I THINK ON THE FLIP
SIDE THE REQUIREMENT CAN BECOME
TOO ONEROUS AND A LOT OF TIMES
WHAT HAPPENS IS THE
QUOTE/UNQUOTE GOOD MENTORS
DOUBLE DOWN AND CONTINUE TO DO
MORE AND MORE, IT MAY NOT CHANGE
THE EGREGIOUS EXAMPLES BAD
MENTORSHIP SO IT'S NOT
NECESSARILY SOLVING SOME
PROBLEMS THAT ARE IDENTIFIED,
IT'S JUST TAXING THE PEOPLE THAT
SPEND ALL THEIR TIME MENTORING
TO BEGIN WITH.
IF WE CAN FIND A GOOD BALANCE ON
THAT, BECAUSE, YEAH, IT CAN BE
CHALLENGING FROM THE P.I.
STANDPOINT.
>> I TOTALLY AGREE.
SOME WAS COMING THROUGH -- THINK
THE REWARD R01, FOR THOSE
MENTORS WHO HAVE DEDICATION
TOWARDS THAT TRAINING.
THERE'S -- IT TAKES AWAY SOME
TAX.
BUT SOME EMPHASIS IN A LOT OF
CHANGES DO -- IS THERE A
CONSEQUENCE, LIKE PART OF T32
SHOULD HAVE MECHANISMS, BUT HOW
DO YOU REMOVE A BAD MENTOR AND
HOW DO YOU DEAL WITH THAT, NOT
NECESSARILY EVEN IN A BAD
SITUATION BECAUSE A LOT OF TIMES
IT MAY BE JUST THAT DYNAMIC
BETWEEN MENTOR-MENTEE, AND A LOT
OF PROGRAMS NEED TO HAVE THAT
ESTABLISHED, DESCRIBE THAT,
ISABEL TUITIONAL TUITION -- INL
GUARANTEE, DESCRIBING THAT
PROCESS.
>> ONE OTHER THING BASED EMILY'S
COMMENT IS THAT THERE WAS A
PAPER DECADES AGO, ONLY LIKE 25
TO 33% OF INDIVIDUALS WHO GET A
K GET THEIR R01 WITHIN FIVE
YEARS OF THEIR K, THE VAST
MAJORITY ARE FACING A FUNDING
GAP BEFORE THEIR FIRST R01.
WHEN THEY LOOK AT TEN-YEAR
OUTCOMES INCREASED TO 45%.
SO THAT MEANS WE LOSE A BIG
PROPORTION OF THE WORK FORCE
THAT WOULD BE SUCCESSFUL
BECOMING R01 FUNDED, THAT'S THE
PERIOD WHEN THEY ARE AT RISK
FROM A UNIVERSITY PERSPECTIVE,
IN REGARD TO THE FIRST POSITION
OR PROMOTED, ET CETERA.
THE R03 BY GIVING THEM
ADDITIONAL FUNDING BUT WITHIN
THE FIVE-YEAR PERIOD MAY DOUBLE
FUND RESEARCH THAT WOULD HAVE
HAPPENED ANYWAY.
I HATE TO SAY THAT BECAUSE WE
WANT TO ENCOURAGE THINGS BUT
THEY IN A MENTORED SITUATION BY
DEFINITION.
PERHAPS WHAT MIGHT BE BETTER IS
LIKE INCENTIVIZING PEOPLE WHO
GOT SCORED ON THEIR R01 TO GET
SOME SORT OF EXTENSION AWARD SO
THERE'S K99, R00, FOR PEOPLE WHO
HAVE THE K08, WE CAN SUPPORT
PEOPLE THAT ARE DOING A LOT OF
WORK, SUBMITTING GRANTS, GETTING
DISORDER, JUST NEED A LITTLE BIT
TO BE ABLE TO FINE TUNE.
THAT ALLOWS THEM THE SUPPORT TO
BRIDGE THEM THROUGH THAT REALLY
VULNERABLE PERIOD.
THAT'S WHERE THE UNIVERSITY
STRUGGLES TO FIGURE OUT WHAT TO
DO BECAUSE THEY HAVE TO BE
APPOINTED SOMEHOW AND THEY MIGHT
BE APPOINTED ON A CLINICAL TRACK
WITH NO PROTECTED TIME, IT
DISSOLVES FROM THERE.
>> I REALLY APPRECIATE THAT
COMMENT, AND THAT SUGGESTION.
ONCE AGAIN IT REMINDS ME HOW
CRITICALLY IMPORTANT SOME OF
THESE BRIDGE AWARDS ARE THAT ARE
OFFERED BY FOUNDATIONS AS WELL
AS INSTITUTIONS, AND A QUESTION
FOR US HOW CAN WE BEST USE OUR
FUNDS AND DO NEEDS ANALYSIS.
IS THERE GREATER NEED IN THAT
DIRECTION?
THIS IS WHY WE APPRECIATE YOUR
SUGGESTIONS, GIVING US FOOD FOR
THOUGHT.
I ALWAYS AM ASKING THE QUESTION
WHAT OTHER APPROACHES ARE OTHER
INSTITUTES BE A CENTERS TAKING,
WHEN WE RECRUIT TALENTED FOLKS
WE GET TO BORROW THEIR GREAT
IDEAS.
I APPRECIATE SEVERAL OF YOU MADE
COMMENTS ALONG THOSE LINES,
APPRECIATE YOUR GIVING THAT FOR
US TO THINK ABOUT.
>> WE HAVE STARTED LOOKING AT
THE SUCCESS OF R/K AWARDEES.
TALK TO SUE ABOUT DOING THIS
ANALYSIS, WHAT THE R03 AWARD ES,
K OF HOW THAT SUBSET DOES, WE'RE
LOOKING HIGHER.
IT DEPENDS ON THE MECHANISM.
SOME DO BETTER, WORSE THAN
OTHERS, SOME MECHANIC --
MECHANISMS HAVE BEEN AROUND
SINCE THE '70s.
SOMETHING AROUND 40 TO 50%
WITHIN FIVE YEARS AFTER AWARD,
BEGINNING OF AWARD, IN THAT ONE
TO TWO YEARS AFTER THE AWARD,
GETTING ARPG, NOT NECESSARILY
R01 BUT OTHER MECHANISMS THAT
WOULD QUALIFY.
THESE SHOW SUCCESS BUT THE
SECOND POINT IS WE ALSO LIKE TO
EMPHASIZE THAT YOU DON'T NEED
THAT K99, THAT K TO GET THAT
FIRST FACULTY POSITION.
A COUPLE INSTITUTES HAVE DONE
ANALYSES, AND THAT MANY OF THE
FIRST-TIME APPLICANTS PEOPLE
HAVE GOTTEN ASSISTANT
PROFESSORSHIPS, THEY HAVEN'T HAD
AN F32 OR ANY K AWARDS SO I
WOULD LIKE TO EMPHASIZE TO
ANYONE, ANY STATE OF THE CAREER,
THEY CAN BE SUCCESSFUL AND
BECOME PROFESSORS WITHOUT HAVING
THESE FUNDAMENTAL MECHANISMS,
THESE ARE WAYS TO SPRINGBOARD
PEOPLE BUT NOT THE ONLY WAY.
>> ONE MORE COMMENT ABOUT BEING
IN THE FIFTH YEAR OF THE K AND
HAVING TO RESUBMIT AND R01,
WE'RE -- NIH IS NOT AS FACILE AS
SOME FOUNDATION FUNDING COULD
BE.
I THINK WE REALLY NEED THESE --
THE PRESSURE FROM THE PEOPLE WHO
BELONG TO THESE SOCIETIES AND
FOUNDATIONS TO HELP SUPPORT THE
SHORT TERM SMALL AWARDS THAT
WILL ENABLE THAT VERY QUICK
TURNAROUND TO ENABLE THAT
CANDIDATE TO GET THAT
APPLICATION BACK IN.
UNFORTUNATELY, WE'VE GOT A
PROCESS, THAT'S THE WAY IT GOES.
BUT OTHER THAN THAT, YOU KNOW, I
THINK WE WOULD LIKE TO COMBINE
EFFORTS AND NOT DUPLICATE
EFFORTS.
>> THIS IS A REMINDER FOR THOSE
THAT AREN'T AWARE WE'RE SO
FORTUNATE TO HAVE OVER 90
ORGANIZATIONS THAT COMPRISE
NIAMS COALITION.
THAT DOES GIVE US OPPORTUNITIES
TO COMMUNICATE WITH THEM, SOME
THINGS WE'RE HEARING AND THEY
CAN SHARE BEST PRACTICES AND WE
WORK TOGETHER TO FIGURE OUT HOW
WE CAN BEST SUPPORT THE NAMES
COMMUNITY.
I KNOW THIS TOPIC IS GOING TO
COME UP AGAIN.
THIS IS PROMPTING US TO RAISE
THIS AGAIN WITH THEM AND PUT OUR
HEADS TOGETHER.
BECKY?
>> I WAS GOING TO BRING IT UP
BEFORE TALKING ABOUT STRATEGIC
PLAN AND THE LAST COALITION
MEETING THAT WE HAD.
I WAS IN A BREAKOUT ROOM, I
OFFERED TO CREATE A CHART OF ALL
OF OUR STRATEGIC PLANS AND MAJOR
INITIATIVES, THEY WOULD LINE UP
BEAUTIFULLY IN SOME AREAS.
I'VE BON THAT STEERING COMMITTEE
FOR LIKE ALMOST 20 YEARS
PROBABLY.
WE CAN PROBABLY AMPLIFY SOME
THINGS AND LIKE THESE PATIENT
GROUPS AND SOCIETIES LIKE OURS
CAN BRING IT OUT TO DISEASE
SPECIFIC AREAS OR LIKE SKIN OR
BONE OR WHATEVER.
AND NOT HAVE TO READ THE
ENTIRE -- YOUR ENTIRE PLAN OR
OURS, LIKE YOU'RE SAYING.
I GET IT, IT'S A LOT.
EVEN THREE-FOLD THING.
BUT ALSO WITH THE FUNDING, I'M
IN A FIVE-PERSON OFFICE. I WAS
HAPPY TO GIVE OUT BRIDGE AWARDS,
100% SUCCESSFUL.
THEY HAD AN R 21 BUT JUST MISSED
PAYLINE.
WE CAN AM PLY PHI -- AMPLIFY AND
SEND THE MESSAGE OUT, IF WE
WROTE AN ARTICLE HOW SUCCESSFUL
BRIDGE AWARDS TO EXTEND
USEFULNESS AND LIFE OF YOUR A
AWARDS WE COULD DO THAT PRETTY
DARN EASILY.
YEAH, SO --
>> GREAT.
THANK YOU.
WE'LL TAKE YOU UP ON YOUR OFFER
TO COMPARE THESE STRATEGIC PLANS
AND WE TALKED TO TEO ABOUT THIS
SO MANY ORGANIZATIONS HAVE
BEEN -- FID, I HEARD ABOUT YOUR
STRATEGIC PLANNING PROCESS AT
THE LAST MEETING.
WE'RE COMMITTED TO BEING
STRATEGIC, TRYING TO SUPPORT
OVERLAPPING COMMUNITIES.
SO THAT WOULD BE REALLY GREAT TO
LOOK AT.
WHERE ARE THE OVERLAPS.
STEVE?
>> A GREAT CONVERSATION, BUT
ALSO POTENTIALLY IN FRAMING
CUSHION AROUND WORKFORCE
DEVELOPMENT, STRENGTHENING
SCIENCE PIPELINE, ESPECIALLY
NIAMS, SUCCESS OF BRIDGE GRANTS,
HOW IT KEEPS PEOPLE IN THE FIELD
VERSUS LEAVING, THAT MIGHT BE A
WAY TO HAVE THE DISCUSSION.
MOST OF THE NON-PROFITS ARE
WORRIED, WE NEED A DISCUSSION ON
WHY THAT -- HOW THAT COULD MAYBE
HELP WORKFORCE STRENGTHENING,
FRAMING MIGHT BE IMPORTANT AS
WELL.
>> YES, BECKY, PLEASE.
>> ONE OTHER THING THAT I
THOUGHT OF WHEN BETH WAS
TALKING.
WE HAVE BETWEEN US 90 GROUPS,
HOW MANY GREAT PEER-REVIEWED
JOURNALS WE HAVE.
WE COULD HAVE -- TRY TO SUGGEST
WE GET LETTERS OTHER COMMENTARY
ABOUT THE PIPELINE, ADD D.E.I.
INITIATIVES, THAT'S PART OF OUR
STRATEGIC PLAN.
I THINK WE CAN HELP BETTER --
THIS IS GOOD.
WE CAN DO THAT.
>> GREAT.
I THINK WE NEED TO GET BACK TO
FID ABOUT THE COMMENTARY, RIGHT,
BOB?
WE WON'T LET YOU GET AWAY.
OKAY, GREAT.
DARREN REMINDED ME CLOSED
SESSION STARTS LATER THAN I
THOUGHT.
I KNOW THAT ONE OF OUR MEMBERS
NEEDS TO GO SOON.
SO THANK YOU FOR BEING HERE.
WE KNOW YOU HAVE TO TAKE OFF.
THANKS SO MUCH.
OTHER ADDITIONAL COMMENTS?
I DON'T KNOW WHETHER COLLEEN IS
LISTENING IN.
IF YOU ARE, IF YOU WANT TO SAY
ANYTHING ABOUT THE COALITION, I
HOPE YOU'RE TAKING NOTES.
BUT ANYWAY, ANY OTHER COMMENTS,
SUGGESTIONS, WE'RE ALWAYS EAGER
TO HEAR IDEAS FOR HOW WE CAN DO
THINGS BETTER, DIFFERENTLY.
AND MANY TOPICS THAT HAVE BEEN
THE FOCUS OF THE PAST COUNCIL
MEETINGS SINCE I CAME TO THE NIH
HAVE BEEN TOPICS SUGGESTED BY
OUR COUNCIL MEMBERS.
SO, IF YOU'RE THINKING ABOUT
AREAS THAT WE HAVEN'T DISCUSSED
AS A GROUP YET, YOU'D LIKE TO
SUGGEST THOSE, RAISE THOSE NOW
OR REACH OUT TO DARREN AND ME
SUBSEQUENTLY.
>> EXCELLENT POINT.
YOU CAN GENERATE IDEAS FOR OUR
NEXT COUNCIL IN JANUARY AND
CONTACT US ANYTIME.
>> IT HELPS TO HAVE ADVANCE
NOTICE BECAUSE SOMETIMES WE CAN
ARRANGE TO INVITE A GUEST
PRESENTER FOR EXAMPLE TO SPEAK
ABOUT A TOPIC THAT IS BROADER
THAN NIAMS.
SO, HAVING SOME PLANNING TO MAKE
THESE AS PRODUCTIVE AS POSSIBLE
IS HELPFUL.
DOUG?
>> BEING NEW ON COUNCIL WASN'T
SURE IF YOU EVER INVITED
PROMINENT AWARDEE WITH A PIVOTAL
RESEARCH THAT WAS SHOWN DURING
THE EARLY SLIDE SET TO COME AND
PRESENT AS A STIMULANT, STIMULUS
FOR FURTHER DISCUSSION, AND WHAT
THE FUTURE OF THAT RESEARCH
MIGHT HOLD.
>> THAT'S A GREAT SUGGESTION.
PERHAPS ALSO, YOU KNOW, TO WHAT
EXTENT AND HOW SUPPORT FROM
NIAMS WAS PIVOTAL, WHAT SUPPORT
WOULD HAVE BEEN HELPFUL.
I'VE BEEN THINKING ABOUT
IDENTIFYING SOME KIND OF
CHAMPIONS IN OUR AREAS OF
RESEARCH WHO HAVE GOTTEN TO A
GREAT PLACE BUT DEALT WITH A LOT
OF CHALLENGES ALONG THE WAY.
LET'S SEE.
THERE'S AN INVESTIGATOR THAT
DEVELOPED THESE IMPLANTS FOR
EXAMPLE WHOSE STORY I REALLY
ADMIRE.
SO THAT'S A GREAT SUGGESTION.
AND IT GETS AN OPPORTUNITY TO
CELEBRATE SOME GREAT SCIENCE.
I COULD SPEND A LOT OF TIME
DURING MY PRESENTATIONS TALKING
ABOUT SCIENCE BUT, YOU KNOW,
WHERE TO START AND SO IF THERE'S
A PERSON WITH A GREAT STORY, A
PERSONAL CAREER STORY, PAIRED
WITH FASCINATING SCIENCE TOPIC,
THAT WOULD BE REALLY
INTERESTING.
SO THANK YOU FOR THAT
SUGGESTION.
>> COULD I ASK A QUESTION ABOUT
THAT?
DR. BERTAGNOLLI'S ISSUE THAT THE
NIH DOESN'T DETERMINE THE
ALLOCATIONS ACROSS INSTITUTES,
MAYBE THAT PRESENTATION SHOULD
BE TO CONGRESS.
YOU KNOW, SO THEY CAN UNDERSTAND
THE VALUE OF, YOU KNOW, THINK
ABOUT ALL OF THE INCREASING
INCIDENTS OF AUTOIMMUNE DISEASE,
AUTOIMMUNITY IS A CHRONIC
DISEASE, GREATER HEALTH CARE
BURDEN THAN CANCER, CANCER
EXTENDING IS NINE-FOLD HIGHER
THAN AUTOIMMUNE DISEASE SPENDING
DESPITE THE HEALTH CARE BURDEN
ON THE UNITED STATES, RIGHT?
LIKE MAYBE THESE ARE THINGS THAT
DON'T BECOME APPRECIATED AND
DON'T REALIZE THESE SERIOUS
DISEASES ARE TREATED WITHIN
NIAMS, DISEASES PEOPLE CARE
ABOUT THAT SERVE AS MODELS FOR
ALL DISEASES, WE CAN LEARN ABOUT
THEM, ET CETERA.
>> WE'RE ALWAYS PREPARED AND
EAGER TO HAVE OPPORTUNITIES TO
SPEAK TO MEMBERS OF CONGRESS AND
THEIR STAFF.
AND WE'VE HAD REGULAR
OPPORTUNITIES TO DO THAT.
WE CAN'T DIRECTLY ADVOCATE OR
MAKE REQUESTS BUT WE CAN ATTEND,
BE INVITED TO THESE SESSIONS.
ACTUALLY THAT'S ANOTHER
IMPORTANT ROLE THAT MEMBERS OF
COUNCIL CAN PLAY, COALITION
ORGANIZATIONS, IF THEY HAVE
RELATIONSHIPS WITH MEMBERS OF
CONGRESS WHERE THEY HAVE AN
OPPORTUNITY TO, YOU KNOW, CREATE
AN OPPORTUNITY TO HEAR ABOUT
DISEASES IN THE NIAMS AREA AND
WHY THEY ARE IMPORTANT, WE CAN
COME AND PRESENT, YOU ALL CAN
SPEAK IN SUPPORT OF NIAMS.
>> IT'S INTERESTING BECAUSE
SCIENTISTS, WE'RE NOT TRAINED IN
ADVOCACY, THE JOKE IS DOES
SMOKING CAUSE LUNG CANCER, UM,
WELL, WE GO INTO THE SCIENCE,
CAN NEVER SAY IT IN A CONCRETE
FASHION.
SOMETIMES THAT'S HAPPENED WHERE
THEY WILL TAKE PEOPLE, WE'LL GO
TO CONGRESS, AND PEOPLE WILL
PRESENT ON VARIOUS SPECIFIC
THINGS AND SOMETHING WOULD
HAPPEN, WELL, I DON'T THINK THAT
WORKS, BUT IF YOU WORK ON OPIOID
YOU OF WE CAN HELP YOU OUT.
IT'S LIKE MATCHING INITIATIVES,
WELL, NO.
SO WE DON'T KNOW HOW TO COUNTER
IT TO BASICALLY MAKE ANYTHING
NEW.
SO THAT'S FRUSTRATION, WE
PRESENT AND WE'LL FEEL LIKE IT'S
NOT APPRECIATED BECAUSE OTHER
THINGS ARE THOUGHT TO BE MORE
IMPORTANT.
SHOULD BE THE A WAY FOR THE PIE
TO ACCOMMODATE ALL THESE MORE
THAN DISEASES.
THAT'S KIND OF THE CHALLENGE
THAT EVERYBODY THINKS OF.
>> I JUST WANT TO REMIND THE
COUNCILORS WHEN YOU'RE HERE
YOU'RE GOVERNMENT EMPLOYEES,
YOU'RE NOT ALLOWED TO TALK TO
CONGRESS.
YOU HAVE TO COME OUT
INDEPENDENTLY OF COMING TO
COUNCIL.
>> YOU CAN DO IT BUT NOT AS
COUNCIL MEMBER.
>> I'M FLANKED BY THE TWO ETHIS
FOLKS TO KEEP ME IN MIND.
>> I WAS THINKING THE SAME
THING.
>> THERE WE GO.
>> CAN I ADD, THAT'S EXTREMELY
SO IMPORTANT BUT ALSO PAIRING UP
THE CONVERSATION DEPENDING WHO
WE'RE MEETING WITH REGARDING
WHAT MATTERS TO THEM.
I TOTALLY AGREE, I'VE BEEN IN
AUTOIMMUNE SPACE FOR 20 YEARS,
IT'S A CHALLENGE WE DON'T HAVE
FUNDING THAT WE SHOULD HAVE FOR
DISEASES AND IMPACT.
SOME CONGRESSMEN AND SENATORS
AND CONGRESSWOMEN ARE FOCUS ON
THEIR OWN DISEASES OR PEOPLE
THEY KNOW ARE OR THE ECONOMY OF
THEIR MARKET, HOTCH COMES -- HW
MUCH COMES BACK TO THEIR MARKET.
DEPENDS WHO YOU TALK TO, HOW TO
SPIN THAT CONVERSATION.
I WAS TALKING TO LINDSEY BEFORE,
I DO THINK IT'S IMPORTANT THAT
WE START TO REENGAGE IN A
DIFFERENT WAY AROUND THE URGENCY
OF THESE DISEASES NIAMS
REPRESENTS.
WE'LL LOOK AT ARTHRITIS
FOUNDATION FOR ADVOCACY WORK, A
HUGE SUMMIT NEXT SEPTEMBER BUT
WE'RE REGULARLY ON THE HILL,
IMPORTANT TO PREPARE THE
PRESENTERS TO HANDLE THE
QUESTIONS AS WELL.
I LOVE THE COMMENT.
THANKS.
>> ALSO -- OH.
>> I'VE SPENT A LOT OF TIME ON
THE HILL PRE-COVID ERA.
AND CONVERSATIONS COULD NOT BE
MORE WARM AND WELCOMING.
AND INCLUDING SID, PREVIOUS
DIRECTOR WAS A MASTER OF THE
ELEVATOR SPEECH.
HERE WE ARE, WE'VE HAD NO
INCREASE COMPARED TO OTHER
INSTITUTES.
YOUR POINT OF TARGETING IS
RIGHT.
IT'S NOT A QUESTION OF THE
MESSAGE.
IT'S THE QUESTION OF WHO YOU'RE
TALKING TO.
UNFORTUNATELY.
AND THERE'S BIG ORGANIZATIONS,
A.A.OS IN PARTICULAR, MY
KNOWLEDGE FOR A WHILE STOPPED
DOING CAPITOL HILL DAYS BECAUSE
IT WAS NOT PROVIDING WHAT THEY
WANTED.
YOU HAVE TO BE REALLY SMART AND
I DON'T WANT TO USE THE WORD
NAIVE, BUT JUST A WARM FRIENDLY
GREETING WITH AN ELEVATOR SPEECH
DOESN'T GET YOU THERE.
>> WELL, I HATE TO SOUND NAIVE
FOLLOWING THAT COMMENT, BUT I
WILL SAY, STEVE AND I HAD A
CONVERSATION EARLIER, I DO THINK
THE TIMING IS REALLY GREAT FOR
NIAMS, WE HAVE NEW AUTOIMMUNE
RESEARCH.
THE DIRECTOR OF THE NEW OFFICE
OF AUTOIMMUNE DISEASE RESEARCH
HAS BEEN HERE ALL DAY, VICKIE, A
RHEUMATOLOGIST, WE'RE SO PLEASED
TO BE WORKING WITH.
REPRESENTS CONGRESSIONAL
INTEREST FOR SURE.
NOW WOMEN'S HEALTH RESEARCH
INITIATIVE WITH THE BIG
INTERSECTION WITH AUTOIMMUNE
DISEASE AND BONE DISEASE.
NIAMS FALLS IN THE MIDDLE.
WE JUST HAD THE NIH DIRECTOR
HERE TO BE REMINDED WHAT WE'RE
ALL ABOUT.
SHE'S LEADING IN THESE EFFORTS.
A GOOD OPPORTUNITY TO LEVERAGE
RELATIONSHIPS WE HAVE, TARGET
THE PEOPLE WE THINK CAN MAKE A
DIFFERENCE FOR US.
AND VICKIE, I DON'T KNOW IF YOU
WANT TO SAY ANYTHING BRIEFLY
ABOUT YOUR OFFICE OR
OPPORTUNITIES OR -- WE REALLY
APPRECIATE YOUR BEING HERE.
>> SURE.
HAPPY TO.
HAPPY TO HEAR ALL YOUR TALKING
POINTS.
I WOULD GIVE STATISTICS,
AUTOIMMUNE DISEASE AFFECT
23.5 MILLION AMERICANS.
MAYBE HIGHER THAN THAT.
WE'RE NOT 100% SURE.
IN CONTRAST THERE ARE
1.2 MILLION WITH HIV, DISEASES
ARE FUNDED DIFFERENTLY.
THE OFFICE IS NEW.
WE FORMED A YEAR AGO.
I STARTED IN NOVEMBER.
IT'S BEEN A WHIRLWIND.
WE'VE BEEN ACTIVELY WORKING
ACROSS ALL OF THE I.C.s TO
IDENTIFY OPPORTUNITIES WHERE WE
CAN COLLABORATE AND POTENTIALLY
FIND CROSS-CUTTING AREAS OF
RESEARCH THAT WILL HELP ADDRESS
THE FACT THAT WE DON'T REALLY
UNDERSTAND WHY DIFFERENT
AUTOIMMUNE DISEASES CO-OCCUR
TOGETHER.
AND THEN LOOK MORE DEEPLY INTO
THE MECHANISMS BY WE
AUTOIMMUNITY HAPPENS.
THERE WILL BE IN THE COMING YEAR
A STRATEGIC PLAN FOR AUTOIMMUNE
DISEASE, AIMING FOR NEXT YEAR.
KEEP YOUR EYES OPEN.
WE HAVE A WEBSITE WITH FUNDING
OPPORTUNITIES THAT MIGHT BE OF
INTEREST TO EVERYONE IN THE
COMMUNITY, WITHIN THE ORWH
WEBSITE.
OUR OFFICE IS IN THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH, IN
THE OFFICE OF THE DIRECTOR OF
THE NIH.
WE SIT SEPARATELY FROM ALL THE
I.C.s AND COLLABORATE WITH
EVERY I.C. AND EVERY OTHER
OFFICE, TO TRY AND BOLSTER
AUTOIMMUNE DISEASE RESEARCH
ACROSS THE NIH AND DEFINITELY
FUNDING OPPORTUNITY PART OF THE
WEBSITE IS REGULARLY UPDATED.
YOU'LL FIND SOME THINGS OF
INTEREST ON THAT.
>> THANK YOU SO MUCH FOR BEING
HERE.
AND FOR THE NEW BUSINESS, I.C.
IS INSTITUTE AND CENTER.
TOOK A WHILE TO FIGURE THAT OUT.
>> SHE'S SPOUTING ACRONYMS.
THANK YOU SO MUCH, VICKIE.
SO I DON'T SEE ANY OTHER HANDS
UP.
ONCE AGAIN, OTHER IDEAS,
SUGGESTIONS, COMMENTS, PLEASE
REACH OUT TO US.
WE WANT TO GIVE EVERYBODY A FEW
MINUTES BREAK BEFORE CLOSED
SESSION SO WHY DON'T WE CALL THE
OPEN SESSION TO AN ENDS NOW.
OKAY WITH YOU, DARREN?
>> FINE.
>> OKAY.
SO, THANK YOU ALL.
THANKS TO MEMBERS OF THE PUBLIC
WHO ARE LISTENING.