I'M GOING TO CALL THIS MEETING
OF THE 128 th MEETING OF THE
ADVISORY COMMITTEE TO THE
DIRECTOR AT THE NATIONAL
INSTITUTES OF HEALTH TO ORDER.
AND MAYBE WE CAN START.
MAYBE CORY, CAN WE START WITH
YOU AND I'LL HAVE ALL THE
COUNCIL MEMBERS INTRODUCE YOUR
SELVES QUICKLY.
-- DISABILITY AND HEALTH AND
FOCUSSED ON ADVANCING EQUITY.
>> COULD YOU YOU USE YOUR
MICROPHONE, PLEASE.
>> ALEXA KIMBALL CEO OF A LARGE
FACULTY PRACT AND WORKING WITH
MARIE BERNARD ON THE WORKING
GROUP ON AND WITH HARVARD
MEDICAL.
>> MY PURCHASE IS ON PRIVACY
TECHNOLOGIES AND DATA SHARING IN
A.I. FAIRNESS.
>> ATUL BUTTE A PROFESSOR AND
RESEARCHER AND INSTITUTE
DIRECTOR AT UCSF AND.
>> MONICA BERTAGNOLLI, NIH
DIRECTOR.
>> LARRY TABAK, PRINCIPLE
DIRECTOR NIH.
>> CHIEF OF STAFF.
>> I'M GISSELLE CORBIE, SENIOR
VICE PROVOST UNC SCHOOL OF
MEDICINE.
>> I WORK ON THE CENTER FOR AIDS
RESEARCH AND MY RESEARCH MOSTLY
FOCUSES ON NIH PREVENTION AND
SUBSTANCE USE IN LGBTQ YOUTH.
>> I'M A DIRECTOR AT THE HOWARD
HUGHES INSTITUTE AND WORK ON
EMOTIONS AND HEALTH AND DISEASE.
>> WE HAVE A FEW COUNCIL MEMBERS
ON ZOOM.
MAYBE WE CAN START WITH HOWARD.
>> MY FLIGHT GOT CANCELED I
APOLOGIZE FOR NOT BEING THERE.
>> WE UNDERSTAND.
ARE THERE ANY COUNCIL MEMBERS WE
DIDN'T ACKNOWLEDGE?
WITH THAT LET ME TURN IT OVER TO
DR. TABAK.
>> THANK YOU, EVERYBODY AND GOOD
MORNING.
A FEW HOUSEKEEPING THINGS.
FIRST AS YOU KNOW THE MEETING IS
OPEN TO THE PUBLIC INCLUDING THE
PRESS AND BEING WEBCAST.
PRESENTATIONS AND SUPPLEMENTAL
MATERIALS ARE POSTED ACD WEBSITE
SHOULD HAVE HAPPENED AND IF IT
HASN'T SHOULD BE SHORTLY.
THIS MEETING WAS ANNOUNCED IN
THE FEDERAL REGISTER.
WE DID RECEIVE PUBLIC COMMENT
AND ACD MEMBERS CAN REVIEW ON
THEIR SHARE FILE SITE.
ACD MEMBERS AND PRESENTERS AS
YOU HEARD ARE USING A HYBRID
FORMAT BOTH IN PERSON AND ON
ZOOM TO CONDUCT OUR MEETING
TODAY AND TOMORROW.
IF YOU ARE ON ZOOM, PLEASE RAISE
YOUR HAND VIRTUALLY RATHER THAN
CHAT TO POSE A QUESTION OR MAKE
A COMMENT OR QUESTION.
WHEN AN ACD MEMBER DOES WISH TO
MAKE A COMMENT, PLEASE TURN ON
YOUR VIDEO AND MIC SO WE ARE
RECORDING MORE THAN JUST THE
BLACK BOX WITH YOUR NAME ON IT.
A PHOTOGRAPHER'S GOING TO BE
HERE FROM ABOUT 11:00 TO THE
LUNCH BREAK.
THEY WILL TAKE I'M TOLD CANDID
PHOTOS -- OKAY.
BE ON YOUR BEST BEHAVIOR.
A GROUP PHOTO AT THE START OF
LUNCH.
HOWEVER, THERE'S ONE CURVE ABOUT
LUNCH, OUR PLANS TO BRING IN
LUNCH HIT A SNAFU AND WE'LL HAVE
TO GO TO THE CAFETERIA.
IF YOU PREFER NOT TO NAVIGATE
THE CAMPUS LET US KNOW AND WE'LL
SECURE SOMETHING FOR YOU AND
BRING IT BACK OR DO POT LUCK OR
TELL US WHAT YOU'D LIKE.
WITH THAT I'LL TURN IT BACK TO
DR. BERTAGNOLLI.
>> EXCELLENT.
LET'S JUST NOW GO AHEAD AND
START FIRST WITH NEIL SHAPIRO TO
GIVE US A BUDGET UPDATE.
>> YOU DO YOURS FIRST.
YOU HAVE BETTER CONTEXT.
>> SOUNDS GOOD.
I'LL GO FIRST.
STAY DOWN, NEIL.
WE'LL START WITH ME.
OKAY.
WELL, TODAY I'M GOING TO START
BY TELLING YOU ABOUT A FEW NIH
LEADERSHIP CHANGES, AWARDS AND
EVENTS AND DISCUSS FOLLOW-UP TO
THE ACD WORK GROUP
RECOMMENDATIONS AND CLOSE WITH
SCIENCE HIGHLIGHTS.
SO LEADERSHIP CHANGES.
DR. NEUZIL JOINED THE FOGARTY
CENTER AS THE NEW DIRECTOR.
SHE WAS PREVIOUSLY AN ENDOWED
DIRECTOR OF VACCINOLOGY AND
CHIEF OF THE GEOGRAPHIC MEDICINE
AT THE UNIVERSITY OF MARYLAND
SCHOOL OF MEDICINE AND OUR SIN
EAR THANKS TO DR. KILLMARKS WHO
SERVED AS THE ACTING DIRECTOR
SINCE JANUARY 2023.
DR. MOONEY BECAME DIRECTOR OF
THE CENTER FOR INFORMATION
TECHNOLOGY IN MID MARCH.
HE SPENT HIS CAREER DEVELOPING
EFFECTIVE AND COLLABORATIVE
COMPUTER SYSTEMS TO SUPPORT
BIOMEDICAL RESEARCH AND WAS
PREVIOUSLY A PROFESSOR OF
INFORMATICS AT THE UNIVERSITY OF
WASHINGTON SCHOOL OF MEDICINE.
THANK YOU TO DIRECTOR DE SOUZA
WHO WAS ACTING DIRECTOR.
AFTER SERVING AT THE DIRECTOR OF
MENTAL HEALTH DR. GORDON WILL
DEPART FROM HIS POSITION TO
RETURN TO COLUMBIA UNIVERSITY
CHAIRING THE DEPARTMENT OF
PSYCHIATRY.
HE HAS OVERSEEN AN EXTENSIVE
PORTFOLIO OF RESEARCH AND
PROMOTED WIDE RANGING PRIORITIES
INCLUDING SUICIDE PREVENTION
RESEARCH, EXPANDING EFFORTS IN
NEURAL CIRCUIT RESEARCH,
INCREASING INVESTMENTS IN
MATHEMATICAL AND THEORETICAL
APPROACHES TO HEALTH RESEARCH
AND DEVELOPING EARLY-STAGE
INTERVENTIONS FOR PATIENTS AT
RISK FOR SCHIZOPHRENIA.
HE HAS BEEN A VERY INSPIRING
LEADER AND WE WILL MISS HIM.
WE ARE ALSO GRATEFUL TO THE
CURRENT DEPUTY DIRECTOR WHO HAS
AGREED TO SERVE AS ACT BEING
DIRECTOR WHILE THE SEARCH IS
UNDERWAY.
NOW AWARDS.
FOUR NIHHERS RECEIVED 2023
PRESIDENTIAL RANK AWARDS THE
HIGHEST HONOR TO CAREER CIVILIAN
EMPLOYEES.
CONGRATULATIONS TO KEITH,
COLLEEN, CAMILLE AND JERRY.
THREE NCI SCIENTISTS WERE
AWARDED HHS DEPARTMENTAL AWARDS
AND DR. LINEHAN AND HE AND HIS
RESEARCH GROUP DISCOVERED THE
LINDOW GENE RESPONSIBLE FOR A
KIDNEY CANCER AND A COMMON FORM
OF SPORADIC KIDNEY CANCER.
THEY DESCRIBED THE PATHWAY
INVOLVED IN SENSING OXYGEN.
THE 2019 NOBEL PRIZE WAS AWARD
FORD THIS WORK AND HIS WORK WAS
CITED BY THE NOBEL COMMITTEE AS
BEING CRITICAL TO THEIR
FINDINGS.
AND ANDRE NUSSENZWEIG UNCOVERED
MOLECULAR PATHWAYS AND A
CONTRIBUTOR TO THE STUDY OF DNA
REPAIR AND DR. WIDEMANN GOT THE
MERITIOUS AWARD HELPING TO
GENERATE THE NEXT GENERATION OF
STEIN SCIENTISTS AND ENABLING
MANY DISCOVERIES IN HER GROUP.
EVENTS NEXT.
WE WERE HONORED TO HOST
PRESIDENT BIDEN LAST DECEMBER ON
THE 14th OVERLAPPING WITH THE
LAST ACD AT THE NIH CLINICAL
CENTER TO DISCUSS REDUCING THE
COST OF PRESCRIPTION DRUGS.
THESE PHOTOS WERE TAKEN AT THE
WHITE HOUSE DEMO DAY BY THE
OFFICE OF SCIENCE AND POLICY
LAST YEAR WHERE NIH AND OTHER
AGENCIES WERE ABLE TO SHOW OFF
INNOVATIONS SUPPORTED BY FEDERAL
INVESTMENTS.
IN LATE JANUARY WE HAD A MEETING
WITH THE GATES FOUNDATION TO
SUPPORT AND DEVELOP
INFRASTRUCTURE FOR PUBLIC HEALTH
PROGRAMS INTERNATIONALLY.
I DISCUSSED THE CRITICAL NEED TO
EXPAND THE EVIDENCE BASE FOR
CLINICAL CARE EVERYWHERE AND I
TRAVELED TO ATLANTA WITH FIRST
LADY DR. JILL BIDEN WITH THE
WOMEN'S HEALTH RESEARCH SHE
HELPED LAUNCH.
AND WE VISITED SEVERAL
UNIVERSITIES AND RESEARCH
CENTERS IN THE LAST HALF YEAR.
IN FEBRUARY I VISITED THE
UNIVERSITY OF ALABAMA
BIRMINGHAM, THE HIRSK STATE
SCHOOL OF MEDICINE AND I GAVE A
LECTURE ON FUNDING PROCESS AND
DISCUSSED MY HOPES FOR THE
AGENCY'S DIRECTION.
IN MARCH I WENT ON A TRIP TO
WEST VIRGINIA.
THE PHOTO SHOWS ME WITH DR. MING
LEI AT THE WEST VIRGINIA
UNIVERSITY SCHOOL OF MEDICINE IN
MORGANTOWN, WEST VIRGINIA.
I VISITED DIFFERENT PARTS OF THE
WEST VIRGINIA HEALTH SCIENCES
CAMPUS.
IN APRIL, I VISITED THE BROAD
INSTITUTE IN CAMBRIDGE,
MASSACHUSETTS.
I'M IN A PICTURE WITH POLICY
MAKERS AND WITH THE DIRECTOR OF
THE BROAD INSTITUTE AND M.I.T.
AND HARVARD AND THE CO-PRINCIPAL
INVESTIGATOR OF THE ALL OF US
NEW ENGLAND CONSORTIUM.
IN APRIL, I ALSO HELPED
CELEBRATE THE 75th ANNIVERSARY
OF THE FRAMINGHAM HEART STUDY
SUPPORTED BY NHLBI.
75 YEARS, THREE GENERATIONS.
REALLY AMAZING.
THIS PHOTO SHOWS FROM THE LEFT,
BOSTON UNIVERSITY SCHOOL OF
MEDICINE DEAN AND
U.S. REPRESENTATIVE KATHERINE
CLARK.
I HAD THE OPPORTUNITY TO SPEAK
WITH MANY INTERESTING PEOPLE.
THIS PHOTO SHOWS ME GETTING TO
CHAT WITH DR. VINCE SER ONE OF
THE FATHERS OF THE INTERNET WHO
HOLDS THE POSITION OF CHIEF
INTERNET EVANGELIST FOR GOOGLE.
THIS WAS FOR THE ANNUAL CULTURAL
LECTURE AT NIH IN MARCH.
WE TALKED ABOUT THE PROMISES AND
PERILS OF ARTIFICIAL
INTELLIGENCE IN BIOMEDICAL
RESEARCH AND HEALTH CARE
DELIVERY.
IN FEBRUARY WE HAD A CHANCE TO
CELEBRATE DR. ALTER WHO RECEIVE
THE NOBEL PRIZE IN 2020 AND HAD
A SOCIALLY DISTANCE AWARD
CEREMONY DUE TO THE COVID-19
PANDEMIC.
THIS YEAR WE GATHERED TO
CELEBRATE A NEW EXHIBIT THAT
COMMEMORATES HIS WORK
DISCOVERING THE HEPATITIS C
VIRUS AND TRANSFORMING THE
SAFETY OF THE BLOOD SUPPLY.
I'D ALSO LIKE TO SPEND TIME
DISCUSSING HOW WE FOLLOWED UP ON
ACD WORKING GROUP
RECOMMENDATIONS.
SPECIFICALLY THOSE INVOLVING
TRAINING, DISABILITY AND NOVEL
ALTERNATIVE METHODS WE'RE NOW
CALLING NEW APPROACH METHODS.
FIRST UPDATES ON ADVANCING
POST-DOCTORAL TRAINING
RECOMMENDATIONS FROM THE NIH ACD
WORKING GROUP.
IN APRIL, WE ANNOUNCED A LARGE
INCREASE IN POST-DOCTORAL
STIPENDS.
THE MINIMUM SALARY IS BEING
INCREASED TO JUST OVER $61,000.
WE ARE COMMITTED TO REACHING THE
RECOMMENDED $70,000 STIPEND OVER
THE NEXT THREE TO FIVE YEARS.
TO SUPPORT FAMILY FRIENDLY WORK
ENVIRONMENTS, NIH IS ALSO
INCREASING THE CHILDCARE SUPPORT
TO $3,000 BEGINNING WITH THE
FISCAL YEAR '24 AWARDS.
WE'VE ALSO TIGHTENED THE
DEFINITION OF POST-DOCTORAL
SCHOLAR TO BE CLEAR IT'S A
TERM-LIMITED POSITION OF
MENTORED RESEARCH AND
PROFESSIONAL DEVELOPMENT TO
PREPARE FOR AN INDEPENDENT
CAREER.
WE'RE ALSO CLARIFYING POLICIES.
FOR EXAMPLE, RECOMMENDED FUNDING
LEVELS ARE MINIMUMS NOT
MAXIMUMS.
INSTITUTIONS ARE WELCOMED TO
SUPPLEMENT STIPENDS WITH
NON-FEDERAL FUNDING.
SCHOLARS CAN BE HIRED AS
EMPLOYEES.
TIME SPENT AS A POST-DOCTORAL
SCHOLAR DOES NOT EXCLUDE SOMEONE
FROM THE LOAN FORGIVENESS AND
ENSURING RESEARCH ENVIRONMENTS
FREE OF HARASSMENT AND FOSTER
DIVERSE PERSPECTIVES.
WE'RE GATHERING INPUT TO FORM
ADDITIONAL ACD WORKING GROUP
RECOMMENDATIONS AND FINALIZING
AN RFI.
WE'RE DEVELOPING IMPLEMENTATION
TEAMS TO ADDRESS RECOMMENDATIONS
SUCH AS THOSE SHOWN HERE
CREATING AND EXPANDING WAYS TO
SUPPORT THE FULL TALENT TOOL OF
POST-DOCTORAL SCHOLARS.
FACILITATE THE TRANSITION OF
SCHOLARS TO THEIR NEXT CAREER
STAGE INCLUDING THOSE CAREERS
OUTSIDE ACADEMIA AND PROMOTING
AND TRAINING AND PROFESSIONAL
DEVELOPMENT OF SCHOLARS AND
THEIR MENTORS.
NEXT I'D LIKE TO PROVIDE AN
UPDATE ON HOW WE FOLLOWED UP ON
RECOMMENDATIONS FROM THE ACD SUB
GROUP ON INDIVIDUALS WITH
DISABILITIES.
ONE RECOMMENDATION WAS TO REMOVE
THE LANGUAGE ABOUT REDUCING
DISABILITY FROM THE NIH MISSION
STATEMENT.
SINCE FOR SOME, THIS COULD BE
PERCEIVED AS PERPETUATING ABLIST
BELIEFS THAT DISABLED PEOPLE ARE
FLAWED AND NEED TO BE FIXED
CONSIDERING INPUT FROM NIH
LEADERS AND SUBJECT MATTER
EXPERTS A PROPOSED REVISED
MISSION STATEMENT WAS DEVELOPED
WHICH IS, TO SEEK FUNDAMENTAL
KNOWLEDGE ABOUT THE NATURE AND
BEHAVIOR OF LIVING SYSTEMS AND
TO APPLY THAT KNOWLEDGE TO
OPTIMIZE HEALTH AND PREVENT OR
REDUCE ILLNESS FOR ALL PEOPLE.
NIH THEN ISSUED AN RFI FOR THE
PROPOSED REVISED MISSION
STATEMENT.
WE RECEIVED 480 RESPONSES AND
WILL RELEASE A PUBLIC REPORT IN
THE COMING WEEK.
INTERESTINGLY HOWEVER, WE
RECEIVED MANY STRONG OPPOSING
VIEWS.
40% OF RESPONDENTS FELT
DISABILITY SHOULD BE ADDED BACK
TO THE MISSION STATEMENT.
EITHER AS IT WAS OR USING
DIFFERENT WORDING SUCH AS
OPTIMIZED FUNCTION OR MAXIMIZE
ABILITIES.
I THINK THIS RFI SHOWED WE NEED
MORE INPUT BEFORE FINALIZING THE
MISSION STATEMENT AND PLAN TO
HAVE MORE ROUNDTABLES FOR MORE
COMMUNITY INPUT BEFORE MAKING A
FINAL DECISION.
I'D LIKE TO PROVIDE AN UPDATE ON
RECOMMENDATIONS ON THE ACD SUB
GROUP ON INDIVIDUALS WITH
DISABILITIES.
WE ESTABLISHED A DISABILITY
SUBCOMMITTEE IN 2024 TO
COORDINATE AND CONSULT ON
ACTIVITIES RELATED TO THE NIH
DEI STRATEGIC PLAN INCLUDING
ACCESSIBILITY.
WITHIN THE OFFICE OF THE
DIRECTOR, THE DIVISION OF
PROGRAM COORDINATION PLANNING
AND STRATEGIC INITIATIVES IS
BRINGING ON A SENIOR LEADER TO
SUPPORT NIH WIDE ACTIVITIES ON
DISABILITIES RESEARCH.
WE WILL HAVE CONVERSATIONS
ACROSS NIH STARTING THIS SUMMER
ABOUT HOW TO COORDINATE AND
ELEVATE RESEARCH FOR THE
DISABILITIES COMMUNITY.
THESE WILL BE DONE IN CLOSE
COLLABORATION WITH SUBJECT
MATTER EXPERTS AT NIMHD, NICHD
AND OTHERS.
WE'RE ALSO CONDUCTING AN
ANALYSIS TO BETTER UNDERSTAND
OUR CURRENT INVESTMENTS IN THIS
AREA.
WE EXPECT TO DEVELOP AN OVER
ARCHING PLAN FOR COORDINATING
NIH DISABILITIES RESEARCH AND TO
WRITE A COMMENTARY TO SHARE
PRIORITIES.
AND FINALLY, I JUST WANT TO
ACKNOWLEDGE THAT THE
DISABILITIES COMMUNITY IS.
INCREDIBLY DIVERSE AND ALTHOUGH
IT IS VERY EXCITING AND WE TAKE
THIS ON WITH GREAT ENERGY, THIS
IS A BIG TASK AND WILL REQUIRE
ENGAGEMENT OF REALLY LITERALLY
EVERY PART OF NIH IN ORDER TO
MAKE SURE WE'RE SERVING THE
COMMUNITY PROPERLY.
NOVEL ALTERNATIVE METHODS.
AT THE LAST ACD MEETING IN
DECEMBER WE HEARD FROM THE
WORKING GROUP ON CATALYZING THE
DEVELOPMENT AND USE OF NOVEL
ALTERNATIVE METHODS WHICH ISSUED
A REPORT AND SEVEN
RECOMMENDATIONS.
NOTE, WHILE THE WORKING GROUP
USED NOVEL ALTERNATIVE METHODS
OR NAMS THE REPORT DEFINED THESE
AS INSILICO, INCHEMICO AND IN
VITRO METHODS TO FIND AND
REPLACE THE USE OF ANIMALS AND
EMPHASIZE THOSE WITH THE
GREATEST POTENTIAL FOR HUMAN
RELEVANCE.
I ACCEPTED THE RECOMMENDATIONS
AND ISSUED A SUPPORTIVE
STATEMENT IN FEBRUARY.
OVER ALL THE REPORT SET FORTH A
VISION FOR AN INTEGRATED ECO
SYSTEM TO CATALYZE SCIENTIFIC
DISCOVERY.
EACH RECOMMENDATION WAS TIED TO
A HIGH PRIORITY NEED AND
INTERPLAY IS OUTLINED HERE IN
THE DIAGRAM.
SUCCESSFUL INTEGRATION ACROSS
APPROACHES IN COMBINATORIAL NAMS
AND RECOMMENDATION FIVE, WITH
ACCESS TO INTEROPERABLE DATA
SETS, RECOMMENDATION TWO.
PART OF THE RECOMMENDATION IS
EFFECTIVE TECHNOLOGY
DISSEMINATION, RECOMMENDATION
THREE AND ENGAGEMENT WITH END
USERS TO MAKE SURE THE APPROACH
IS SOCIALLY RESPONSIBLE,
RECOMMENDATION SIX AND FIT FOR
PURPOSE.
THERE MUST BE AVENUES FOR
COMPREHENSIVE TRAINING AND
WORKSHOPS AND INFRASTRUCTURE
PEOPLE CAN USE TO LEARN.
THIS SYNTHESIS ACROSS MODELS AND
FIELDS ENABLES A VIRTUOUS CYCLE
WHERE APPROACH METHODS RESEARCH
INFORMS WORK IN OTHER MODELS.
ALSO INFORMS HUMAN HEALTH FROM
WHICH WE CAN USE BIOMEDICAL DATA
TO FURTHER IMPROVE MODELS.
IMPLEMENTATION PLANNING IS
UNDERWAY AND ASSESS
PRIORITIZATION AND FEASIBILITY
AND IDENTIFY WHICH ARE MOST
APPROPRIATE FOR INVOLVEMENT AND
ENGAGING THROUGH AN ONGOING DATA
CALL TO ALL OF NIH AROUND WORK
IN THIS AREA AND WITH ICOs
EXPECTED TO HAVE PARTICULARLY
HEAVY LIFTS HERE.
SO FOR EXAMPLE, NLM AND THE
OFFICE OF DATA SCIENCE STRATEGY
FOR DATA, NIE HS FOR THEIR
INVOLVEMENT OF TOXICOLOGY.
AFTER COMPLETING THIS STEP WE'LL
DEVELOP METRICS TO TRACK
PROGRESS.
A LOT OF WORK IS ALREADY
UNDERWAY AND I PARTICULARLY
WOULD LIKE TO HIGHLIGHT A COMMON
FUND PROGRAM TARGETING AT
EXACTLY THIS AREA.
THE COMMON FUND PROGRAM
COMPLEMENT ANIMAL RESEARCH AND
EXPERIMENTATION OR COMPLEMENTARY
IS MAKING GREAT STRIDES IN THIS
AREA.
THE PROGRAM ALIGNS WITH ACD
RECOMMENDATIONS AND SPANS NIH
WITH REPRESENTATION FROM 23ICOs.
THE MISSION IS TO CATALYZE THE
DEVELOPMENT, STANDARDIZATION,
VALIDATION AND USE OF
HUMAN-BASED NEW APPROACH
METHODOLOGIES THAT WILL
TRANSFORM THE WAY WE DO BASIC
TRANSLATIONAL AND CLINICAL
SCIENCES.
THE PROGRAM SPEEDS THE USE OF
HUMAN-BASED NAMS.
COMPLEMENT-ARIE HAD A RETREAT
AND RAN A PROGRAM FOR NEW
APPROACH IN NAMES A $1 MILLION
TOTAL WAS AWARDED TO 20 DIVERSE
TEAMS SOLUTIONS PROPOSE NEW WAYS
TO CONDUCT BASIC RESEARCH,
UNCOVER DISEASE MECHANISMS AN
TRANSLATE KNOWLEDGE INTO
PRODUCTS AND PRACTICE.
PRIVATE-PUBLIC PARTNERSHIPS WITH
THE NIH.
WE'RE EXCITED TO SEE HOW THESE
RECOMMENDATIONS ADVANCE THE AREA
OF SCIENCE AND ALSO DEMONSTRATES
ON A VERY COMPREHENSIVE LEVEL
NIH'S COMMITMENT TO THE
APPROPRIATE AND ETHICAL USE OF
ANIMALS FOR BIOMEDICAL RESEARCH.
I'D LIKE TO SAY WORDS ABOUT THE
PROGRAMS AND INITIATIVES.
I'LL TOUCH ON THE FIRST FOUR
BRIEFLY SINCE YOU'LL HEAR MORE
DURING THE REST OF THE MEETING.
FIRST, CARE FOR HEALTH.
WE'RE ALL DEEPLY CONCERNED ABOUT
THE OVER ALL HEALTH OF THE
U.S. POPULATION.
IT IS NOT AS GOOD AS IT SHOULD
BE AND WE'RE NOT ON THE RIGHT
TRACK.
AS THE GRAPH SHOWS THE LIFE
EXPECTANCY AND LOWER THAN SOME
CONSIDERABLY POORER NATION.
THIS IS THOUGH WE SPEND MUCH
MUCH MORE ON OUR HEALTH SYSTEM.
WE ALSO ACKNOWLEDGE AS ONE OF
OUR CORE PRINCIPLES THAT OUR
WORK IS NOT FINISHED WHEN WE
DELIVER SCIENTIFIC DISCOVERIES.
OUR WORK IS ONLY FINISHED WHEN
ALL PEOPLE ARE LIVING LONG AND
HEALTHY LIVES.
SO, I'M VERY EXCITED THAT LAST
WEEK WE LAUNCHED IN PILOT FORM A
PROGRAM THAT IS VERY CLOSE TO MY
HEART.
YOU WILL HEAR MORE ABOUT THIS
PROGRAM LATER TODAY.
CARE FOR HEALTH WILL ALLOW NIH
TO CONNECT WITH PRIMARY CARE
PROVIDERS AND THEIR PATIENTS
GIVING THEM AC STES TO RESEARCH
SAYS TO RESEARCH AND THE
OPPORTUNITY TO PARTICIPATE IN
CLINICAL TRIALS AND FOCUS ON THE
POPULATIONS EXPERIENCING THE
CHALLENGES IN HEALTH PRIMARILY
RESPONSIBLE FOR OUR DECLINING
LIFE EXPECTANCY.
NEXT I'D LIKE TO BRIEFLY DISCUSS
THE WOMEN'S HEALTH RESEARCH.
ON MARCH 18 I JOINED OTHER NIH
LEADERS WHEN PRESIDENT BIDEN
SIGNED AN EXECUTIVE ORDER TO
PRIORITIZE WOMEN'S HEALTH
RESEARCH ACROSS THE FEDERAL
RESEARCH PORTFOLIO.
THIS FOLLOWED HIS STATE OF THE
UNION ADDRESS LAYING OUT A
VISION FOR TRANSFORMING WOMEN'S
HEALTH RESEARCH.
THE EXECUTIVE ORDER INITIATED AN
NIH WIDE EFFORT TO INVEST $200
MILLION IN FISCAL YEAR 2025 TO
FUND PROJECT IN WOMEN'S HEALTH
RESEARCH.
THE NEW DIRECTIVES WILL MAKE
SURE IT'S INTEGRATED AND
PRIORITIZED ACROSS THE FEDERAL
GOVERNMENT INCLUDING IN THE
DEPARTMENT OF DEFENSE, THE V.A.,
THE NATIONAL SCIENCE FOUNDATION
AS WELL AS OTHER AGENCIES IN THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES.
WE'LL HEAR MORE ABOUT WOMEN'S
HEALTH RESEARCH AND POLICIES
FROM DOCTORS TARA SCHWETZ AND
DR. CLAYTON.
NEXT, RECOVER.
YOU'LL HEAR MORE LATER IN THE
MEETING BUT I WANT TO TOUCH ON
THE PROGRAM BRIEFLY BECAUSE IT
IS SO IMPORTANT AND SO MANY
PEOPLE ARE COUNTING ON IT.
AS YOU CAN SEE FROM THE SLIDE WE
HAVEN'T BEEN JUST SITTING ON OUR
HANDS.
RECOVER IS ONE THEIR WORLD'S
LARGEST AND MOST DIVERSE LONG
COVID COHORTS AND THE ONLY ONE
THAT IS DEEPLY CHARACTERIZED.
RECOVER HAS CREATED A NETWORK OF
NEARLY 300 RESEARCH SITES WHICH
ARE UNIVERSITIES, HOSPITALS AND
CLINICS WHERE HUNDREDS OF LONG
COVID RESEARCHERS ACROSS THE
NATION ARE WORKING WITH NEARLY
90,000 ADULT AND PEDIATRIC
RESEARCH PARTICIPANTS CONDUCTING
MEDICAL EVALUATIONS AND
COLLECTING DATA AND BIO
SPECIMENS.
AND THEN ANALYZING AND SHARING
THE DATA AND RESULTS BROADLY
WITH THE RESEARCH COMMUNITY,
PHYSICIANS, PATIENTS AND THE
PUBLIC.
RECOVER CLINICAL TRIALS ARE
ADAPTIVE MEANING THEY ARE DESIGN
TO EVALUATE MULTIPLE TREATMENT
SIMULTANEOUSLY.
THIS METHOD ENABLES THE BEST
TREATMENTS TO GET TO PATIENTS
MORE QUICKLY THAN IN TRADITIONAL
TRIALS.
IMPORTANTLY, THEY'RE ALSO
DESIGNED WITH SOLID END POINTS
TO DELIVER DEFINITIVE RESULTS.
SOMETHING THAT THAT IS VERY
DIFFICULT WITH A DISEASE AS
COMPLEX AND HETEROGENEOUS AS
LONG COVID.
INTERVENTION CAN IN THE BE
SHOWING PROMISE QUICKLY THE
TRIALS CAN QUICKLY PIVOT TO TEST
NEW INTERVENTIONS.
IN FEBRUARY THE PROJECT RECEIVED
AN INFUSION OF ADDITIONAL $15
MILLION AND WE ANNOUNCED
CLINICAL TRIALS AND THE PROGRESS
IN TREATING LONG COVID TOMORROW
MORNING.
BRAIN.
YOU'LL HEAR MORE ABOUT THE BRAIN
INITIATIVE FROM THE PROGRAM
DIRECTOR DR. NGAI AND BRIEFLY
TOUCHED ON IT NOW.
THIS INITIATIVE HAS TRANSFORMED
THE FIELD IN WAYS WE COULDN'T
HAVE PREDICTED WHEN WE STARTED.
THE INITIATIVE BUILT AND SHARE
TOOLS TO OFFER A NEW LENS ON THE
BRAIN.
IN SHORT, WE HAVE NOW MUCH
BETTER MAPS TO NAVIGATE THE
WORLD'S MOST COMPLEX COMPUTER.
BRAIN HAS GIVEN RESEARCHERS THE
FLEXIBILITY TO BUILD TEAMS OF
EXPERTS IN DIFFERENT FIELDS LIKE
A START-UP ENVIRONMENT.
THE MULTI-DISCIPLINARY TEAMS
MADE RESEARCH FASTER AND MORE
EFFICIENT BRINGING TREATMENTS
CLOSER IN REACH.
NOW TO THE CANCER MOON SHOT
SUPPORTED THROUGH THE 21st
CENTURY'S CURES ACT HELPED FUEL
THE WORK THAT LED TO A LARGE
BODY OF ACCOMPLISHMENTS.
PUBLICATIONS, 78 PATENT
APPLICATIONS, 89 CLINICAL
TRIALS.
NEW NETWORKS THAT ACHIEVED
SIGNIFICANT ADVANCES
PARTICULARLY IN CELL THERAPY FOR
SOLID TUMORS, IDENTIFYING NEW
ANTIGEN TARGETS, ENGINEERING AND
MORE EFFICIENT EFFECTIVE T CELLS
AND OVERCOMING T CELL
EXHAUSTION.
POWERFUL INFRASTRUCTURE
INCLUDING THE DATA COMMONS THAT
BRINGS TOGETHER MASSIVE AMOUNTS
OF DATA IN THE CLOUD AND MAKES
IT EASIER FOR SCIENTISTS TO
CONDUCT ANALYSES.
THE HUMAN TUMOR ATLAS NETWORK
CHANGES OUR ABILITY TO
UNDERSTAND THE BIOLOGY OF
PRECANCERS AND HOW THEY EVOLVE
AND HOW TUMORS INTERACT WITH THE
CELLS AND TISSUES AROUND THEM.
NEW THERAPIES FOR ENDOMETRIAL
CANCER AND HODGKIN LYMPHOMA.
THE FIRST FDA APPROVED DRUG FOR
SOFT PART SARCOMA A RARE CANCER
THAT ATTACKS MAIM ADOLESCENT AND
YOUNG ADULT PATIENTS.
AND THE MOONSHOT WAS RE-IGNITED
BY PRESIDENT BIDEN IN 2022.
THIS EMPHASIZES AN ALL OF
GOVERNMENT APPROACH WHERE
EVERYONE HAS A ROLE.
THE NEW GOALS ARE A --
ATTAINABLE AND IT WILL TAKE
CONTINUED INVESTMENT AND
STRATEGIC COLLABORATION.
NCI/NIH IS MEETING THE GOALS AND
ACHIEVING THE GOALS OF THE
CANCER MOONSHOT AND THE
COMPREHENSIVE ALL OF SOCIETY
NATIONAL CANCER PLAN REQUIRES
BEING INNOVATIVE DESPITE
HEADWINDS AND BREAKING DOWN
SILOS AND ENGAGING EVERY PERSON
IN REDUCING SUFFERING FROM
CANCER.
NUMBER OF NEW INITIATIVES HAVE
LAUNCHED SINCE THE RE-IGNITE.
CANCER MOON SHOT SCHOLARS SEEK
TO DIVERSIFY THE R01 PORTFOLIO
INCREASING DIVERSE BACKGROUNDS.
THE VANGUARD STUDY WILL LAUNCH
IN 2025 TO EVALUATE WHETHER
MULTI-CANCER DETECTION TESTS AND
EMERGING TECHNOLOGIES ACTUALLY
HELP TO EXTEND PEOPLE'S LIVES
AND UNDERSTAND HOW TO USE THEM
SO THEY BENEFIT EVERYONE.
TRACE OR THE TELERESEARCH
CENTERS OF CLEANSE INITIATIVE
SUPPORTS FOUR CENTERS TO DEVELOP
AN EVIDENCE-BASED APPROACHES TO
CANCER CARE AND SPANNING
PREVENTION TO SURVIVORSHIP AND
ENGAGING OUR RURAL COMMUNITIES.
THE ARPA-H COLLABORATION BETWEEN
ARPA-H, NCI, NCATS, NIDA AND THE
OFFICE OF THE NATIONAL
COORDINATORS.
THE GOAL IS TO MAKE IT EASIER TO
CONNECT BIOMEDICAL RESEARCH DATA
FROM THOUSANDS OF SOURCES AND TO
OVERCOME BARRIERS CAUSED BY
INCOMPATIBLE DATA DIALECTS.
IT THE THREAD TOGETHER RESEARCH
TO HELP THE SCIENTIFIC COMMUNITY
FIND AND SHARE MEDICAL INSIGHTS
MORE EASILY SO WE BREAK DOWN
RESEARCH SILOS, LEARN FROM THE
EXPERIENCES OF MORE PATIENTS AND
DELIVER HEALTH SOLUTIONS TO
PEOPLE MORE QUICKLY.
NAVIGATE IS A COLLABORATION
BETWEEN NCI AND VETERAN AFFAIRS
TO INCREASE THE ENROLLMENT OF
VETERANS WITH CANCER TO NCI
FUNDED CLINICAL TRIAL.
THE V.A. MANAGES IT OWN LARGE
PROGRAM INCLUDING MORE THAN 100
SITES NATIONWIDE FOR DISEASES
THAT INCLUDE CANCER BUT IT'S
FACILITIES OFTEN FACE CHALLENGES
INITIATING AND COMPLETING
TRIALS.
THE PROGRAM IS EXPECTED TO
ENHANCE ACCRUALS TO TRIALS
CARRIED OUT THROUGH THE NATIONAL
CLINICAL TRIALS NETWORK AND THE
NCI COMMUNITY ONCOLOGY RESEARCH
PROGRAM HELPING COMPLETE TRIALS
IN A MORE TIMELY WAY WHILE
ADVANCING THE HEALTH OF VETERANS
WITH CANCER.
THE INVESTIGATION OF RAS/RAF
LIFE CYCLE IS A COLLABORATION
BETWEEN THE DEPARTMENT OF ENERGY
AND NCI FOCUSSING ON MOLECULAR
UNDERSTANDING OF THE ACTIVATION.
USING MACHINE LEARNING TO
CAPTURE THE EFFORT OF
INTERACTIONS INCLUDING THE AT
THE CELL MEMBRANE.
THIS IS TAKING OUR UNDERSTANDING
OF THE SIGNAL TRANSDUCTION
PATHWAY WHOSE ABERRANT
ACTIVATION PLAYS A ROLE IN SO
MANY CANCERS THAT WE'RE NOT
SUCCESSFUL IN TREATING TO
GREATER RESOLUTION THAN BEFORE.
SMOKE-FREE NATIVE IS A
COLLABORATION TO SEND FREE TEXT
MESSAGES TO HELP AMERICAN
INDIANS AND ALASKAN NATIVES QUIT
SPOKING TOBACCO.
AWARDS TO IMPROVE EQUITY IN
CANCER SCREENING REPRESENT THE
FIRST OF ITS KIND PARTNERSHIP
AMONG HEALTH CENTERS AND NCI
CANCER CENTER TO CLOSE THE
SCREENING GAP FOR UNDER SERVED
COMMUNITIES, DECREASE THE IMPACT
OF PREVENTIBLE CANCERS AND
SUPPORT PATIENTS AND CAREGIVERS.
WE TALKED EARLIER ABOUT THE NEED
FOR MORE WOMEN'S HEALTH
RESEARCH.
WE ALSO NEED MORE RESEARCH THAT
ADDRESSES HEALTH AND WELL BEING
ACROSS THE ENTIRE LIFE SPAN.
CHILDREN HAVE SPECIFIC HEALTH
ISSUES AND ADOLESCENCE IS A TIME
OF MANY CHALLENGES.
I'D LIKE IT TALK ABOUT NIH
RESEARCH THAT APPLIES TO
CHILDREN AND ADOLESCENTS.
FIRST, WE KNOW MANY PARENTS
ACROSS THE COUNTRY ARE CONCERNED
ABOUT THE AFFECTS OF DIGITAL
MEDIA AND SCREEN TIME ON THEIR
CHILDREN AND TEENS.
NIH SUPPORTS A BROAD RANGE OF
RESEARCH TO UNDERSTAND THE
EFFECTS MUCH TECHNOLOGY AND
DIGITAL MEDIA ON CHILD
DEVELOPMENT FROM PRESCHOOLERS TO
TEENAGERS.
RECENT FINDINGS INCLUDE TWO
RESULTS FROM THE ADOLESCENT
BRAIN AND COGNITIVE DEVELOPMENT
OR ABCD STUDY.
HIGHER SCREEN TIME USE IS
ASSOCIATED WITH DISRUPTIVE
BEHAVIOR DISORDERS AGES 9-11 AND
DEVELOPING OBSESSIVE COMPULSIVE
DISORDER AND INTERNALIZING
PROBLEMS IN CHILDREN AGE 9-10.
CYBER BULLYING IS ASSOCIATED
WITH EATING DISORDER SYMPTOMS IN
ADOLESCENTS.
RESEARCH ALSO HIGHLIGHTS SOME
POSITIVE USES.
RESEARCHERS DEVELOPED A DIGITAL
SCREENING TOOL TO IMPROVE EARLY
DETECTION OF AUTISM.
GOING BACK TO THE ABC STUDY,
THIS IS A LONGITUDINAL STUDY OF
12,000 CHILDREN 9-10 TO EARLY
ADULTHOOD.
THIS DIVERSE COHORT REPRESENTS
THE RACIAL AND ETHNIC
COMPOSITION OFF THE COUNTRY AND
IT'S GOING TO ASSESS FACTORS
THAT INFLUENCE INDIVIDUAL BRAIN
DEVELOPMENT TRAJECTORIES AND
FUNCTIONAL OUTCOMES.
THE PREDICTING VIRAL ASSOCIATED
INFLAMMATORY DISEASE SEVERITY IN
CHILDREN WITH LABORATORY
DIAGNOSTICS STUDY IS PART OF THE
RAD X PROGRAM TO DEVELOP TOOLS
TO UNDERSTAND THE SPECTRUM OF
PEDIATRIC SARS COV2 ILLNESS
INCLUDING THE NEW INFLAMMATORY
SYSTEM IN CHILDREN MISC.
NEARLY 250,000 PATIENTS WERE
ENROLLED BY EIGHT INVESTIGATIVE
TEAMS ACROSS 75 SITES IN 30
STATES IN COLLABORATION WITH
NATIONAL PARTNERS.
-- INTERNATIONAL PARTNERS.
THE RESULTS ARE THE STUDY
IDENTIFIED SIGNATURES OF FIVE
GENES THAT DISTINGUISH MISC FROM
KAWASAKI DISEASE AND OTHER
INFECTIONS AND SHOWING MISC AND
KAWASAKI DISEASE MAY SHARE
SIMILAR IMMUNOPATHOGENIC
PATHWAYS BY IL15.
ONE RESEARCH GROUP ALSO DESIGN A
FIRST-GENERATION BIO SENSOR CHIP
TO IDENTIFY NEW MISC BIOMARKER
SIGNATURES FROM SMALL VOLUME OF
A SALIVA SAMPLE AND A FEW
RESEARCH TEAMS HAVE PRODUCTS ON
THE PATH TO COMMERCIALIZATION.
UNINTENTIONAL INJURIES ARE THE
LEADING CAUSE OF DEATH AND
DROWNING IS THE MOST COMMON
INJURY DEATH.
AS WE HEAD TO SUMMER THESE ARE
STARK REMINDERS.
NOTABLY SIGNIFICANT RACIAL AND
SOCIO ECONOMIC DISPARITIES IN
DROWNING DEATH RATES.
NIH IS LOOKING INTO THE CAUSES
ON DISPARITY AND WORKING ON
SOLUTION TO IMPROVE OUTCOMES.
RESEARCHERS ARE CURRENTLY
INVESTIGATING A VIRTUAL REALITY
LIFE GUARD SURVEILLANCE
ENVIRONMENT INFORM TRAINING
TOOLS AND STRATEGIES FOCUSSING
ON HOW SWIMMING INSTRUCTION MAY
AFFECT AUTISTIC CHILDREN'S
SWIMMING AND WATER SAFETY SKILLS
AND ASSESSING THE EFFECTIVENESS
OF PUBLIC POLICY INTERVENTIONS
IN REDUCING DISPARITIES IN
DROWNING.
NOW, TO CONSIDER THE YOUNGEST OF
CHILDREN.
MORE THAN HALF OF WOMEN WHO
BREAST FEED TAKE AT LEAST ONE
PRESCRIPTION DRUG THOUGH 2% OF
COMMON MEDICATIONS HAVE BEEN
TESTED FOR USE DURING BREAST
FEEDING.
FOR MANY MEDICATION S WE HAVE
NO IDEA HOW MUCH DRUG IS
TRANSFERRED TO THE INFANT.
THE COMMON USED DRUGS IS WORKING
TO BUILD EVIDENCE FOR MOMS AND
DOCTORS TO INFORM THEIR
DECISIONS WHEN BREAST FEEDING.
THE STUDY COLLECTS SAMPLES FROM
MOTHER AND BABY TO LEARN MORE
HOW A DRUG IS TRANSFERRED OR NOT
AND ULTIMATELY TO SHOW IF IT'S
SAFE TO USE AND AT WHAT DOSE.
WE HAVE DRUGS ENROLLED WITH THE
CAPACITY TO STUDY ADDITIONAL
DRUGS.
MORE THAN 60% OF DRUGS USED IN
CHILDREN ARE NOT LABELLED OR
APPROVED FOR USE IN PEDIATRIC
POPULATIONS.
THE BEST PHARMACEUTICALS FOR
CHILDREN ACT FIRST BECAME LAW IN
2002.
AT NIH WE PRIORITIZE WHICH DRUGS
NEED FURTHER STUDY IN PEDIATRICS
AND SPONSOR CLINICAL STUDIES OF
THE PRIORITIZED DRUGS.
THEY'RE CARRIED OUT IN LARGE
PART BY THE PEDIATRIC CLINICAL
TRIALS NETWORK.
THIS INFRASTRUCTURE INCLUDES
MORE THAN 300 CLINICAL SITES TO
STUDY THE FORMULATION, DOSING,
EFFICACY AND SAFETY OF DRUGS AS
WELL AS THE DEVELOPMENT OF
MEDICAL DEVICES USED IN
PEDIATRIC PATIENTS.
TO DATE THE PEDIATRIC TRIALS
NETWORK HAS ENROLLED MORE THAN
12, 500 PATIENTS IN 54 STUDIES
ACROSS 21 THERAPEUTIC AREAS.
27 PRODUCTS HAVE BEEN SUBMITTED
TO THE FDA FOR REVIEW AND 20
LABEL CHANGES HAVE MADE THE USE
OF THESE MEDICATIONS SAFER IN
CHILDREN.
I WANT TO GO BACK ONE MORE TIME
TO THE ADOLESCENT BRAIN
COGNITIVE DEVELOPMENT STUDY.
THIS LONGITUDINAL STUDY BEGAN AS
A JOIN EFFORT OF MULTIPLE
INSTITUTES IN 2018.
INCLUDING NIDA, NATIONAL
INSTITUTE OF MENTAL HEALTH,
NIDCR, NHLBI AND OD AND OTHER
FEDERAL PARTNERS.
OVER 1,000 MANUSCRIPTS HAVE BEEN
PUBLISHED INCLUDING MANY
RESEARCHERS NOT FUNDED --
INCLUDING MANY NOT FUNNED
THROUGH ABCD AND THEY'RE BEING
CITED FROM ORGANIZATIONS LIKE
THE URBAN INSTITUTE AND THE
WORLD HEALTH ORGANIZATION.
FOR EXAMPLE, ONE STUDY PUBLISHED
LAST YEAR, NATURE AND
COMMUNICATIONS FOUND ROBUST
STATE-LEVEL ANTI-POVERTY
PROGRAMS REDUCED THE DISPARITIES
IN BRAIN DEVELOPMENT, ANXIETY
AND DEPRESSION BETWEEN CHILDREN
FROM LOW AND HIGH-INCOME
FAMILIES.
THIS PAPER WAS CITED BY A REPORT
FROM THE URBAN INSTITUTE ABOUT
THE HIGH RETURN ON INVESTMENT
FROM PROGRAMS THAT REDUCE
POVERTY.
STUDIES LIKE THIS PROVIDE
REAL-WORLD EVIDENCE THAT
INTERVENING AND SOCIAL MEDIAS OF
HEALTH CAN AFFECT BRAIN
DEVELOPMENT AND SHOWED THE
IMPORTANCE OF DATA SHARING FROM
LARGE NIH INITIATIVES.
THE LAST PROGRAM I'D LIKE TO
TALK ABOUT IS RESEARCH IS
ALZHEIMER'S AND RELATED
DEMENTIAS.
IT'S LAID THE GROUND WORK FOR
ADVANCES IN ALZHEIMER'S AND
RELATED DEMENTIA RESEARCH
INCLUDING IMPROVING OUR
INFORMATION OF THE UNDERLYING
BIOLOGY OF THESE DISEASES AND
IDENTIFYING IMPORTANT NEW
TARGETS FOR PREVENTION AND
TREATMENT.
DEVELOPING NEW APPROACHES TO
TREATING AND PREVENTING
DEMENTIAS AROUND WE'RE ALSO
SEEING ADVANCES IN CLINICAL CARE
STRATEGIES AND SUPPORT SYSTEMS
FOR FAMILIES AND CAREGIVERS.
THE FIELD TODAY LOOKS VERY
DIFFERENT THAN IT DID JUST A FEW
YEARS AGO.
THIS TABLE COMPARES WHAT WE HAD
AT THE END OF 2023 VERSUS SEVEN
YEARS PRIOR IN 2016.
NOTE THAT 2016 IS WHEN NIH
STARTED RECEIVING LARGE
INCREASES IN CONGRESSIONAL
APPROPRIATIONS FOR ALZHEIMER'S
AND RELATED DEMENTIA RESEARCH.
AS A RESULT, NIH FUNDED RESEARCH
THE FIELD HAS MORE DIAGNOSTIC
TOOLS INCLUDING SOME LOW-COST
AND MINIMALLY INVASIVE BIOMARKER
TESTS.
FOR EXAMPLE, PROCLIVITY AD AND
PROCLIVITY AD2 WHICH CAN DETECT
AMYLOID AND TAU IN THE BLOOD.
THE TESTS MAY BE USEFUL FOR
DETECTION AND RESPONSE TO
TREATMENT.
THE FIELD HAS SEVERAL NEW
APPROACHES TO MANAGING SYMPTOMS
INCLUDING A FLU PHARMACOLOGIC
TREATMENT FOR AGITATION-RELATED
TO ALZHEIMER'S DISEASE AND
SEVERAL BEHAVIORAL AND CARE
INTERVENTIONS.
NOTABLY WE NOW HAVE AN FDA
APPROVED THERAPY FOR ALZHEIMER'S
DISEASE AS WELL AS ANOTHER ONE
CURRENTLY UNDER REVIEW, I
BELIEVE, RENTLY -- RECENTLY
APPROVE.
ONE IS AIM AT DIFFERENT STAGES
OF DISEASE INCLUDING ONE IN
COMBINATION WITH ANANTI-TAU
THERAPY AND MANY FARM KEY --
PHARMACOLOGIC AND
NON-PHARMACOLOGIC INTERVENTIONS
SO THE FIELD HAS MADE STRIDES IN
UNDERSTANDING THE FACTORS
RELATED TO RISK AND PREVENTION.
AND MANY ARE EDUCATIONAL AND
SOCIAL STATUS TO WHERE SOMEONE
LIVES TO THEIR PHYSICAL ACTIVITY
LEVEL.
SEVERAL INTERVENTION APPROACHES
ARE BEING TESTED IN CLINICAL
TRIALS.
RECENT STUDIES HAVE ON THE
AGGRESSIVELY CONTROLLING BLOOD
PRESSURE, TAKING MULTI-VITAMINS
AND ADDRESSING HEARING
IMPAIRMENTS APPEAR TO REDUCE THE
RISK OF DEVELOPING DEMENTIA.
PERSONALIZED HEALTH COACHING
SHOWS PROMISE FOR IMPROVING
COGNITION AND REDUCING RISKS AND
OTHER INTERVENTIONS TARGETING
DIET, SLEEP AND ENVIRONMENTAL
EXPOSURES ARE ALSO UNDER
INVESTIGATION BY NIH FUNDED
RESEARCHERS.
SO, NOW, BEFORE WRAPPING UP I'LL
CLOSE WITH A FEW BRIEF SCIENCE
HIGHLIGHT.
THESE ARE TOPICS FEATURED IN MY
BLOG OVER THE LAST FEW MONTHS.
APRIL 16 WE HAD A POST ABOUT A
NEW MACHINE LEARNING APPROACH
TO DELIVER FASTER DIAGNOSIS FOR
RARE GENTIC DISORDERS.
FEBRUARY 13 I DESCRIBED WORK BY
NIH SCIENTIST TO PRODUCE AN
ATLAS SHOWING THE PATTERNS OF
GENE ACTIVITY THAT TAKE PLACE IN
DIFFERENT TYPES OF CELLS OF THE
PLACENTA DURING LABOR.
THE STUDY WAS THE FIRST TO
ANALYZE GENE ACTIVITY IN THE
PLACENTA AT THE SINGLE-CELL
LEVEL TO BETTER UNDERSTAND THE
COMMUNICATION THAT OCCURS
BETWEEN MATERNAL AND FETAL CELLS
AND TISSUES DURING LABOR.
THESE RESEARCHERS FOUND CELLS IN
THE MEMBRANES WHICH RUPTURE AS
PART OF LABOR AND DELIVERY SHOW
GREAT CHANGES IN MRNA CELLS AND
INFLAMMATORY SIGNALS PLAYED A
ROLE IN SUSTAINING LABOR.
THE IMPORTANCE OF THIS IN THE
FUTURE, WE MAY BE ABLE TO
MONITOR CHANGES IN GENE ACTIVITY
PATTERNS IN THE BLOODSTREAM
BEFORE LABOR SO HEALTH CARE
PROVIDERS CAN INTERVENE IF
NECESSARY, FOR EXAMPLE, TO
PREVENT PRETERM BIRTH.
MY APRIL 25 POST WAS ABOUT A
STUDY THAT SUGGESTED AN ANTIBODY
TREATMENT TARGETED TO THE BRAIN
COULD BLOCK THE INTERACTION
BETWEEN APOE PROTEINS AND LILIB4
RECEPTORS ENABLING MICROGLIA
IMMUNE CELLS TO CLEAR AWAY
AMYLOID PLAQUE THEN FIRST
APPROVED DRUG FOR TREATING
ALZHEIMER'S REDUCES AMYLOID
PLAQUE SO IT SEEMS TO BE A
PROMISING APPROACH.
NEXT MY POST ON MAY 30 HAD
BEAUTIFUL GRAPHICS ACCOMPANYING
IT PROVIDED BY THE RESEARCHERS.
IT WAS ABOUT A STUDY SUPPORTED
IN PART BY THE NIH BRAIN
INITIATIVE IN WHICH RESEARCHERS
TOOK A PORTION OF THE HUMAN
BRAIN THAT'S ABOUT THE SIZE OF
HALF A GRAIN OF RICE AND CREATED
THE MOST DETAILED NANO SCALE
RESOLUTION RECONSTRUCTION OF IT.
THIS TINY PIECE OF HEALTHY BRAIN
CONTAINED ABOUT 57,000 CELLS OF
DIFFERENT TYPES, 230 MILLIMETERS
OF BLOOD VESSELS AND 150 MILLION
NEURAL CONNECTIONS ALONG WITH
PROTECTIVE MYELIN.
THE RESEARCHERS USED ELECTRONIC
MICROSCOPY IN VIVID DETAIL.
THIS IS WHERE RESEARCHERS WILL
PRODUCE AN EQUALLY DETAILED MAP
OF A COMPLETE MOUSE BRAIN ABOUT
100 TIMES BIGGER THAN THE TINY
HUMAN BRAIN FRAGMENT USED HERE.
WITH THAT I WILL CLOSE.
I APPRECIATE THE OPPORTUNITY TO
SPEAK WITH YOU TODAY AND I'D BE
VERY HAPPY TO TAKE YOUR
QUESTIONS.
MAYBE WE CAN LET NEIL AND KATE
PRESENT FIRST AND THEN TAKE
QUESTIONS.
NEIL, YOU'RE UP.
E
>> GOOD MORNING.
THANK YOU FOR ADVANCING.
SO FIRST, LET ME GIVE A WRAP-UP
OF WHAT HAS HAPPENED IN THE
APPROPRIATIONS AREA SINCE WE
LAST MET IN DECEMBER.
FORTUNATELY BACK IN MARCH OUR
FULL YEAR APPROPRIATION PASSED.
THAT'S WHAT'S OFTEN CALLED AN
OMNIBUS IN THIS CASE THERE WERE
TWO BILLS THAT HAD DISCRETIONARY
APPROPRIATIONS THE ANNUAL AMOUNT
FOR AGENCIES INCLUDING NIH.
THAT WAS AFTER A RATHER LENGTHY
PERIOD OF CONTINUING
RESOLUTIONS.
WE HAD FOUR THIS YEAR AND TOOK
US INTO MARCH WHEN THE FISCAL
YEAR STARTS OCTOBER 1.
SO WE WERE OPERATING UNDER A
TEMPORARY SITUATION MUCH OF THE
YEAR WHICH IS ALWAYS A
CHALLENGE.
BUT WE DO HAVE OUR FINAL
APPROPRIATIONS NOW.
THE OTHER THING I WANTED TO
MENTION IS TYPE I DIABETES
FUNDING IS SEPARATE.
IT'S CONSIDERED MANDATORY OR NOT
PART OF THIS ANNUAL
DISCRETIONARY BUT CAN GET
REVIEWED AND WENT THROUGH
CONTINUING RESOLUTIONS THROUGH
THE END OF THE CALENDAR YEAR AND
CONGRESS WAS ANTICIPATING WE
COULD BE UNDER A C.R. BEGINNING
OF NEXT FISCAL YEAR SO THE
DIABETES FUND WERE EXTENDED
THROUGH THAT PERIOD BEYOND JUST
THIS FISCAL YEAR.
THE AMOUNT WAS INCREASED TO $195
MILLION.
FOR THE LAST SEVERAL YEARS IT
WAS $150 MILLION AND WE PROPOSED
A HIGHER AMOUNT AND SO THEY'RE
STARTING TO MOVE IN THAT
INCREASED DIRECTION WE'VE BEEN
PROPOSING AND I'LL TALK MORE
ABOUT THAT LATER.
WE WERE HOPING IT WOULD
CONTINUE.
ONE THING THAT CONGRESS DID NOT
PASS WAS ANOTHER REQUEST
MANDATORY SEPARATE FROM THE
ANNUAL DISCRETIONARY FUNDS FOR
PANDEMIC PREPAREDNESS.
THAT WOULD HAVE ALLOWED US TO
CONTINUE WORK ON THE COVID
RESEARCH BUT EXPANDING IT TO
MORE VIRAL FAMILIES TRYING TO
PREPARE FOR A FUTURE.
HOPEFULLY A PANDEMIC THAT
DOESN'T OCCUR BUT SO FAR WE
HAVEN'T RECEIVED ADDITIONAL
FUNDING FOR THAT.
SO THIS IS A QUICK SUMMARY OF
WHAT CONGRESS DID FOR '24.
YOU CAN SEE THE PROGRAM LEVEL WE
LIST HERE THAT'S THE BROADEST
MEASURE OF OUR BUDGET INCLUDING
ALL SOURCES INCLUDING THE
MANDATORY FUNDS I'D MENTIONED
BEFORE.
A COUPLE THINGS TO POINT OUT.
ONE, THIS WAS A TIGHT YEAR.
WE HAD BEEN GOING FOR THE LAST
SEVERAL YEARS TO FISCAL '23 WE
WERE FORTUNATE TO RECEIVE
INCREASED.
THIS YEAR THAT WASN'T POSSIBLE
BECAUSE OF THE DISCRETIONARY
CAPS THAT WERE SET FOR OVER A
TWO-YEAR PERIOD.
BUT WITH STRONG CONGRESSIONAL
SUPPORT THE APPROPRIATIONS
COMMITTEE WAS ABLE TO PROVIDE
NEW FUNDING WE DID NOT HAVE
BEFORE IN THE REGULAR
DISCRETIONARY AMOUNT.
SO THAT WAS CONSIDERED AN
ACCOMPLISHMENT THEY WERE ABLE TO
DO DESPITE THESE SPENDING CAPS.
THAT'S THE GOOD NEWS.
THE BAD NEWS IS OUR FUNDING FROM
THE CURES ACT THIS WAS FUNDING
THAT IS SORT OF AN INTERESTING
CREATURE.
IT IS NOT SUBJECT TO
DISCRETIONARY CAPS SO IT'S
EASIER FOR CONGRESS TO PROVIDE
THAT AND HARDER TO REPLACE IT TO
SHIFT TO THE REGULAR BASE IT'S
NOW COUNTING AGAINST THE CAPS
WHERE THE CURES ACT FUNDING DID
NOT.
DESPITE OUR BEST EFFORTS THEY
WERE NOT ABLE TO BACK FILL THE
AMOUNT REDUCED IN THE 10 YEARS
CURES PROFILE WHICH WILL END
COMPLETELY IN 2026.
BUT 2023 WAS THE LAST YEAR FOR
THE CANCER MOONSHOT.
THE TWO OTHER PROGRAMS
CONTINUING, THE ALL OF US
RESEARCH PROGRAM AND BRAIN
INITIATIVE ARE THE ONES THAT
CONTINUE TO HAVE SOME CURES
FUNDING IN '25 AND '26.
SO IT'S A CHALLENGE ABOUT A 40%
DECREASE FOR ALL OF US IN BRAIN
AND THE MOONSHOT DOES NOT HAVE
CURES FUNDING.
THAT'S SOMETHING WE ARE WORKING
HARD TO COPE WITH THIS YEAR.
THIS GIVES A MORE SPECIFIC BREAK
DOWN TO INSTITUTES AND CENTERS.
THERE WAS NOT A GENERAL ACROSS
THE BOARD INCREASE SO MOST THE
INSTITUTES AND CENTERS FUNDING
IS FLAT TO WHERE IT WAS IN
FISCAL 2023.
THESE AREAS DID GET MORE OR LESS
FUNDING.
ALZHEIMER'S DISEASE A SMALLER
AMOUNT THAN PRIOR YEARS BUT
CONGRESS CONTINUED TO WANT TO
BUILD THAT AND 120 MILLION FOR
NCI THAT MAY HELP DEALING WITH
THE LACK OF CURES FUNDS FOR THE
MOONSHOT.
OBVIOUSLY A SMALLER AMOUNT AS
YOU CAN SEE BELOW HAD BEEN A
$216 MILLION FOR MOONSHOT AND
THESE ARE THE DECREASES TO BRAIN
AND ALL OF US.
MENTAL HEALTH RESEARCH WAS A
PRIORITY FOR THE ADMINISTRATION
AND CONGRESS.
SO IN THE '24 BILL CONGRESS WAS
ABLE TO INCREASE THAT BY $75
MILLION AND THE COMMON FUND GOT
A DECREASE.
I THINK THAT WAS PARTLY BECAUSE
IT HAD RECEIVED AN INCREASE THE
PRIOR YEAR HAD GONE UP $65
MILLION AND TOOK BACK $50
MILLION OF THAT TO MAKE THE
NUMBERS WORK.
IT WAS EXPRESSED TO US THERE WAS
NO INTENTION ON CONGRESS' PART
TO DEEMPHASIZE THE COMMON FUND.
AS MONICA HAD MENTIONED BEFORE,
WANTED TO TALK ABOUT THE RECOVER
INITIATIVE.
TOGETHER WITH THOSE
DISCRETIONARY CAPS AND AS PART
OF THE OVER ALL PACKAGE IN THE
FISCAL RESPONSIBILITY ACT, THERE
WERE SOME MAJOR REVISIONS OF
REMAINING COVID SUPPLEMENTAL
APPROPRIATIONS.
WE HAVEN'T RESPONDED A NEW COVID
SUPPLEMENTAL APPROPRIATION IN A
COUPLE YEARS.
THE AMOUNTS THAT WERE STILL
OUTSTANDING IN SOME CASES
CONGRESS HAS RESCINDED.
THAT HAS MET PRETTY INTENSE
COMPETITION FOR WHAT FUNDS
REMAIN FROM THOSE PRIOR YEAR
BILLS.
AND RECOVER INITIATIVE HAS BEEN
NIH'S TOP PRIORITY IN TERMS OF
ADVOCATING FOR A PORTION OF
THOSE FUNDS TO BE ALLOCATED BY
HHS FOR THIS TYPE OF RESEARCH.
AS MONICA MENTIONED THERE WAS
$515 MILLION ABOVE THE INITIAL
AMOUNT.
I MENTIONED IN DECEMBER THE $200
MILLION WE WERE ABLE TO OBTAIN
LAST YEAR.
WE GOT ANOTHER $215 MILLION.
WE'LL BE ABLE TO CONTINUE TO
MAKE PROGRESS THERE IN TERMS OF
CLINICAL TRIALS AND OTHER
ACTIVITIES.
THE OTHER THING THAT HAPPENED
THIS SPRING IS RELIEVING --
RELEASING THE PRESIDENT'S BUDGET
AND WE ALWAYS HOPE TO HAVE A
BUDGET PASSED AND IT'S ONLY
HAPPENED ON SCHEDULE ONCE IN THE
LAST 20 YEARS.
CHANCES ARE IT WILL BE LATER IN
AN ELECTION YEAR REMAINS TO BE
SEEN.
THESE ARE THE PROPOSALS AND
PRIORITIES EXPRESSED WE HOPE TO
SEE IN THE '25 BILL.
WE TRIED TO RESTORE THE CANCER
MOONSHOT, IN FACT INCREASE IT TO
HIT THE AMBITIOUS TARGETS OF THE
MOONSHOT AND ADDITIONAL OTHER
INITIATIVES I'LL MENTION IN A
SECOND.
WE WERE ABLE TO REQUEST SMALL
ACROSS THE BOARD INCREASE FOR
INSTITUTES AND CENTERS IN
ADDITION TO SPECIFIC INITIATIVE
PRIORITIES AND WE RE-PROPOSED
THE PANDEMIC INITIATIVE.
WE STILL THINK IT WOULD BE VERY
IMPORTANT TO BE ABLE TO PREPARE
IN THE WAY THAT WE HAVE
REQUESTED.
SO IS THESE ARE DETAILS OF WHAT
WE WERE ABLE TO INCLUDE IN THE
PRESIDENT'S BUDGET.
FOR THE CANCER MOONSHOT IN
ADDITION TO BRINGING BACK THE
LEVELS FROM 2023 WE REQUESTED A
TOTAL OF $716 IN THE MANUAL
DISCRETIONARY APPROPRIATIONS BUT
THAT BY ITSELF WOULDN'T BE
ENOUGH TO ACHIEVE A 50%
REDUCTION AS PROPOSED.
SO WE ALSO HAVE AN ADDITIONAL
NEARLY $1.5 BILLION WE'VE
REQUESTED AS MANDATORY FUNDING
FOR THIS YEAR AND NEXT YEAR TO
ACHIEVE THE MOONSHOT GOALS.
WE ALSO PROPOSED TO PRE STORE --
RESTORE THE BRAIN INITIATIVE AND
RESEARCH FUNDING PROGRAM TO THE
LEVEL OF 2023 BETWEEN REGULAR
AND CURES ACT FUNDS.
WHAT THAT WOULD MEAN ESSENTIALLY
IS CONVERTING THE CURES ACT
MONEY TO THE REGULAR
DISCRETIONARY BASE SO IT WILL BE
ABLE TO CONTINUE AS THE CURES
ACT GOES AWAY IN THE NEXT TWO
YEAR.
THE OTHER INCREASES THAT ARE
MENTIONED AND THESE ARE COMPARED
TO WHAT CONGRESS PROVIDED IN
2024, WE CONTINUE TO TRY TO
WRAPPING UP OUR MENTAL HEALTH
RESEARCH AND THAT COVERS
DIAGNOSTICS, TREATMENT, ENHANCED
PRECISION TO MENTAL HEALTH CARE.
ALSO WE'RE TRYING TO EXPAND A
DOUBLING OF THE OFFICE OF
WOMEN'S HEALTH BUDGET.
THEN WITH TYPE I DIABETES AS
MENTIONED BEFORE WE ARE
REQUESTING $260 MILLION FOR
2025.
COMPARED IT'S ANOTHER 64 BUT
ABOUT $100 MILLION ABOVE THE
ANNUALIZED LEVEL CONGRESS
PROVIDED IN 2024 UP ADDITION TO
THE NATIONAL LIBRARY OF MEDICINE
INITIATIVE.
WITH THAT LET ME STOP AND HAND
OFF TO KATE.
>> GREAT.
GOOD MORNING, EVERYBODY.
KATE KLIMCZAK OFFICE OF THE
LEGISLATIVE POLICY AND GREAT TO
BE HERE TO TALK ABOUT THE
INCREDIBLE WORK NIH HAS BEEN
DOING TO SHARE THE WORK GOING ON
AT NIH WITH OUR CONGRESSIONAL
PARTNERS.
I'M GOING TO GIVE A BRIEF
UPDATE.
I KNOW WE'RE AT TIME SOW I'LL GO
AS QUICKLY AS I CAN.
THERE ARE A FEW HIGHLIGHTS I DID
WANT TO MAKE SURE I SHARED WITH
YOU ALL.
SO, AS DIRECTOR BERTAGNOLLI
FLOAT -- NOTED SHE'S SPENT TIME
ENGAGING WITH OUR CONGRESSIONAL
MEMBERS.
WE HAVE SINCE LAST NOVEMBER
WE'VE HAD AND I THINK THIS
NUMBER INCREASED SINCE THEN BUT
OVER 40 MEETINGS AND CALLS WITH
CONGRESSIONAL MEMBERS AND WE'VE
DONE MULTIPLE CAMPUS AND
DISTRICT SITE VISITS WITH NIH
GRANTEES AND OFTEN CONGRESSIONAL
MEMBERS IN THOSE DISTRICTS OR
STATES HAVE COME AND
PARTICIPATED IN THE SITE VISITS
TO LEARN ABOUT THE NIH WORK
GOING ON IN THEIR STATE OR
DISTRICT AS WELL.
DIRECTOR BERTAGNOLLI NOTED A FEW
BUT HERE'S A PICTURE FROM OUR
VISIT AND THERE WAS
REPRESENTATIVE ATORHALT AND
CONNECTED WITH REPRESENTATIVE
SEWELL WHILE IN BIRMINGHAM.
DURING THE VISITS THEY'VE BEEN
AN OPPORTUNITY FOR US TO LEARN
ABOUT A LOT OF THE ISSUES THAT
ARE IMPORTANT TO MEMBERS OF
CONGRESS.
JUST A BRIEF SNAPSHOT OF TOPICS
THAT HAVE COME UP WITH DIRECTOR
MEETINGS WITH MEMBERS.
MATERNAL HEALTH, MENTAL HEALTH,
SUBSTANCE ABUSE, WOMEN'S HEALTH,
CANCER RESEARCH, RURAL HEALTH
AND LONG COVID ARE JUST A FEW OF
THE HIGHLIGHTS.
MEMBERS HAVE HAD MANY ISSUES BUT
THOSE ARE A FEW OF THE TOPICS
THAT HAVE CONSISTENTLY COME UP
AS PRIORITY AREAS FOR MEMBERS
AND THEIR CONSTITUENTS.
SINCE WE LAST MET IN DECEMBER
THERE'S CONTINUED TO BE SOME
CHANGES IN CONGRESSIONAL -- I'M
SORRY.
THERE HAVE CONTINUED TO BE SOME
CHANGES AND CHURN IN CAPITOL
HILL A FEW FLAGS I WANT TO MAKE
SURE EVERYBODY WAS AWARE OF.
HOUSE SPEAKER JOHNSON HAS FACED
OCCASIONAL CHALLENGES AS SPEAKER
OF TO THE HOUSE BUT REMAINS
SPEAKER.
WE HAVE HAD A CHANGE IN
LEADERSHIP FOR THE HOUSE
APPROPRIATIONS COMMITTEE.
THE FORMER CHAIRWOMAN GRANGER
STEPPED DOWN AND REPLACED BY
REPRESENTATIVE COLE.
THAT MAY BE FAMILIAR TO MANY.
HE HAS PREVIOUSLY CHAIRED THE
HOUSE SUBCOMMITTEE HHS AND NIH
AND FAMILIAR WITH NIH
PROGRAMMING AND HAS NOW CHAIRED
THE FULL HOUSE APPROPRIATIONS
COMMITTEE.
WE LOOK FORWARD TO WORKING WITH
HIM IN THE FY2025 APPROPRIATIONS
PROCESS.
CONTINUING TO NOTE SURE YOU'RE
SEEING THIS IN THE PRESS BUT
PARTICULARLY ON THE HOUSE SIDE
IT'S VERY NARROW.
THE REPUBLICANS HAVE A NARROW
MARGIN AND THERE CONTINUES TO BE
MULTIPLE VACANCIES THAT CHANGE
THE MARGINS.
RIGHT NOW THERE'S FOUR
VACANCIES.
THERE WAS AN ELECTION JUNE 11 SO
THAT WILL CHANGE SLIGHTLY AND I
HIGHLIGHT THAT BECAUSE IT MEANS
IT MAKES THE PATH FOR PASSAGE OF
LEGISLATION FOR THE HOUSE
COMPLICATED.
I JUST WANTED TO EMPHASIZE THE
INCREASES RECEIVED IN '24 AND
PROVIDES A SNAPSHOT OF THE
PRIORITIES OF MANY MEMBERS OF
CONGRESS PARTICULARLY
APPROPRIATORS AN THINGS
IMPORTANT TO THEM, IDEA, HEAL,
IMPROVE, DIABETES, THESE ARE ALL
KEY PROGRAMS AT NIH THAT HAVE
SIGNIFICANT CONGRESSIONAL
SUPPORT AND SAW THAT COME
THROUGH IN '24.
TO REITERATE WHAT NEIL SAID, THE
$300 MILLION INCREASE WE WERE
ABLE TO RECEIVE LAST YEAR IS
REALLY NOTABLE AND I THINK
SPEAKS TO HOW HOW MUCH
CONGRESSIONAL SUPPORT THERE IS
FOR NIH RIGHT NOW.
IT WAS A GREAT OUTCOME FOR THE
AGENCY TO HAVE GOTTEN THE
INCREASE.
LOOKING AHEAD TO FY25.
NEIL WALKED THROUGH WHAT WAS IN
OUR BUDGET AND WANTED TO SHARE A
COUPLE WEEKS AGO DIRECTOR
BERTAGNOLLI HAD HER FIRST BUDGET
HEARING IN FRONT OF THE SENATE
APPROPRIATIONS COMMITTEE AND
JOINED BY A FEW OF HER
COLLEAGUES.
DR. RATHMEL AND HODES AND
GIBB
GIBBONS.
IT WAS A WELL ATTENDED AND
GENERALLY POSITIVE HEARING AND
HIGHLIGHTED A FEW OF THE TOPICS
THAT CAME UP QUITE A LITTLE BIT,
AGAIN, LONG COVID, CANCER
RESEARCH, ALZHEIMER'S DISEASE,
SUBSTANCE ABUSE DISORDERS.
AGAIN, JUST TO GIVE A SENSE OF
THE ISSUES THAT ARE IMPORTANT TO
CONGRESSIONAL MEMBERS.
WE'RE UNLIKELY TO HAVE A HOUSE
HEARING THIS YEAR.
THE HOUSE HAS BEGUN THE FY25
APPROPRIATIONS PROCESS.
HERE'S A TENTATIVE TIME LINE FOR
MARK-UPS FOR THE BILL THAT WILL
FUND OUR AGENCY.
ALL SUBJECT TO CHANGE BUT THIS
IS WHAT WE'RE HEARING RIGHT NOW
IS THE TENTATIVE TIME LINE.
VERY QUICKLY JUST WANTED TO ALSO
TALK A LITTLE BIT ABOUT ANOTHER
LEGISLATIVE PRIORITY THAT WE
HAVE BEEN WORKING ON BECAUSE THE
DIRECTOR ALLUDED TO A.I.,
MACHINE LEARNING, BIG DATA IS
SOMETHING WE HERE AT NIH HAVE
BEEN WORKING ON MANY YEARS.
BUT IN THE LAST COUPLE YEARS
CONGRESS HAS BEGUN TO TAGE A
SIGNIFICANT INTEREST IN THE
TOPIC THINKING HOW THEY WANT TO
REGULATE IT AND FUND IT AND WHAT
GUARDRAILS PLAY BE NEEDED.
WE'RE WORKING HARD TO MAKE SURE
THAT NIH BIOMEDICAL RESEARCH
REMAINS A PART OF THAT
CONVERSATION WHENEVER IT HAPPENS
ON THE HILL.
EARLIER THIS YEAR THE SENATE
RELEASED A BIPARTISAN ROAD MAP
FOR A.I. POLICY AND HIGHLIGHTED
NIH AS A CRITICAL PIECE OF THE
WORK NEEDED THERE.
WE HAVE PARTICIPATED IN NUMEROUS
CONGRESSIONAL BRIEFINGS,
WEBINARS, DEMONSTRATIONS ON THE
HILL TO MAKE THAT CASE.
THIS IS ONE AREA WHERE THERE'S A
POTENTIAL FOR CONGRESSIONAL
ACTIVITY BUT WE WILL HAVE TO
SEE.
AND IT'S AN ELECTION YEAR SO
OBVIOUSLY THAT WILL
SIGNIFICANTLY AFFECT THE
DYNAMICS ON CAPITOL HILL.
THERE WILL BE A FOCUS ON
PRESIDENTIAL CAMPAIGNS.
MEMBERS WILL BE EAGER TO SPEND
TIME UP THEIR DISTRICTS.
WE CAN EXPECT TO SEE A LOT OF
MESSAGING BILLS FROM MEMBERS IS
SOMETHING THAT USUALLY HAPPENS.
A FEW NOTES, THIS PARTICULAR
CONGRESS IS ON TRACK FOR THE
MOST RETIREMENTS IN OVER A
DECADE.
THAT MEANS WE'RE LIKELY TO SEE A
LOT OF CHURN AND NEW MEMBERS
NEXT YEAR AND THE 119th
CONGRESS.
TO DATE 49 MEMBERS OF THE HOUSE
ANNOUNCED THEY'RE NOT SEEKING
RE-ELECTION AND 10 MEMBERS IN
THE HOUSE.
JUST WANTED TO FLAG THAT.
THE OTHER PIECE OF LEGISLATION
WE'RE TRACKING IS APPROPRIATIONS
AND THE FY25 PROCESS UNLIKELY TO
GET DONE BY THE END OF THE
FISCAL YEAR AND WE'LL HAVE TO
WAIT UNTIL THE ELECTIONS IN
NOVEMBER TO SEE HOW THINGS
SETTLE AND HOW CONGRESS
APPROACHES FUNDING FOR THE NEXT
FISCAL YEAR BEFORE THE END OF
THE SESSION.
I WILL END THERE.
>> THANK YOU, KATE.
NOW KATE, NEIL AND I WILL BE
HAPPY TO TAKE ANY QUESTIONS.
CORY.
>> I HAVE A COUPLE OF COMMENTS
AND THEN A QUESTION REGARDING
THE REMOVAL OF THE ABLIST
LANGUAGE FROM THE NIH MISSION.
I UNDERSTAND THIS MEETING IS
OPEN TO THE PUBLIC SO AS A
MEASURE OF INCLUSIVITY OR
INCLUSION FOR PEOPLE WHO MAY BE
BLIND OR VISUALLY IMPAIRED, I'LL
GIVE A BRIEF DESCRIPTION I'M AN
AFRICAN AMERICAN MALE, MID AGE
AND USE THE PRONOUNS HE OR HIM.
MY COMMENT REGARDING THIS
POTENTIAL REMOVAL INCLUDE
CONTEXTUAL PIECES RELATING TO
THE SUBGROUP ON INDIVIDUALS WITH
DISABILITIES RATIONALE FOR
MAKING THE RECOMMENDATION WHICH
HAS TO DO WITH WHAT HAS BEEN
SAID THE SOCIAL, CULTURAL,
ECOLOGICAL MODEL AS SEEING
DISABILITY AS AN LIVED CONDITION
WHICH THE LIVES OF PEOPLE WITH S
IN TERMS OF BARRIER TO ACCESS
AND QUALITY OF HEALTH THE
DISABILITY IS REALLY NOT SEEN AS
THE PROBLEM.
THE PROBLEM IS THROUGH THIS
MODEL LENS SOCIETAL ATTITUDES AS
IT RELATES TO PEOPLE WITH
DISABILITIES.
I THINK THAT'S THE INITIAL
RATIONALE THAT CAME FROM THE
SUBCOMMITTEE AND IT'S IMPORTANT
TO KEEP IN MIND AS NIH CONSIDERS
THE REMOVAL OF THE LANGUAGE THE
SOCIAL ECOLOGICAL MODEL IS IN
LINE WITH OTHER FEDERAL AND
NATIONAL ORGANIZATIONS AS THEY
SEE DISABILITY FOR EXAMPLE THE
CDC HAS CONSIDERED ADOPTION AND
HAS LANGUAGE AROUND THIS
PARTICULAR MODEL IN THE
ENVIRONMENT AS THE ISSUE RATHER
THAN THE INDIVIDUAL WITH THE
DISABILITY AS WELL AS THE U.N.
SO THERE ARE ORGANIZATIONS THAT
ARE MOVING DISABILITY FORWARD
AND ENHANCING UNDERSTANDING OF
DISABILITY AND BARRIERS FOR
DISABILITIES AND IN THIS REGARD
SPECIFIC TO HEALTH CARE ACCESS
AND HEALTH EQUITY UP THAT
REGARD.
AND THE SECOND POINT I'D LIKE TO
MAKE IS NIH HAS RECOGNIZED THE
DISABILITY POPULATION AS A
HEALTH DISPARITY POPULATION.
SO I THINK IT'S IMPORTANT THAT
THE MISSION ALIGNS WITH THIS NEW
PARADIGM AS IT RELATES TO UNDER
SERVED POPULATIONS IN NIH.
AS A MARGINALIZED, UNDER SERVED
POPULATION IT'S IMPORTANT THE
DISABILITY COMMUNITY SEES ITSELF
AS BEING INCLUSIVE WITHIN THE
ENTIRE MISSION OF NIH AND THEN I
HAVE A QUESTION OR A COMMENT.
IT HAS TO DO AND I APPRECIATED
YOUR VERY COMPREHENSIVE REPORT
BUT IT HAS TO DO WITH OUTREACH
AND HOW WILL NIH OUTREACH AND
TALKING ABOUT CONTINUING TO GET
INPUT FROM THE COMMUNITY.
THIS WAS A PUSHBACK OF 40%
CONSIDERABLE OPPOSITION
DEPENDING ON WHO THE OPPOSITION
WAS FROM.
WHICH STARTER GROUPS AND MY
QUESTION WOULD BE THIS IS AN
INCREDIBLY IMPORTANT ISSUE TO
THE DISABILITY COMMUNITY AND THE
INTERSECTION OF THE DISABILITY
COMMUNITY AND THE LGBTQ AND
ETHNIC MINORITIES AND BLACK
AMERICANS WITH DISABILITIES IN
RURAL AREAS, IT SPANS THE
SPECTRUM.
THIS IS A VERY IMPORTANT ISSUE
IN TERMS OF ACCESS AND ALIGNING
THE HEALTH DISABILITY POPULATION
WITH NIH'S MISSION.
REALLY MY QUESTION OR COMMENT IS
HOW DOES NIH PLAN TO OUTREACH TO
ALL THESE MARGINALIZED
INTERSECTIONAL POPULATIONS
WITHIN THE DISABILITY CONTEXT SO
THE AGENCY MAKES SURE THE VOICES
ARE HEARD, RIGHT.
YOU EMPOWER THOSE INDIVIDUALS
AFFECTED IN THE UNDER SERVED
COMMUNITIES TO ENSURE THEY'RE
HAVING INPUT ON IT SEEMS LIKE A
BIG QUESTION NOW WHETHER OR NOT
THE MISSION WILL BE CHANGED.
WE NEED TO ENSURE THAT WE HEAR
THOSE VOICES.
>> THANK YOU VERY MUCH FOR THAT
DR. MOORE.
YOU'RE EXACTLY RIGHT.
WE PUT OUT AN RFI BUT IT WAS OUT
TO THE GENERAL COMMUNITY.
GOT A BUNCH OF RESPONSES BACK.
SOME SAID I'M A PERSON WITH A
DISABILITY AND I THINK THIS OR
THAT AND SOME DIDN'T.
I THINK THE NEXT STEP WE NEED TO
DO IS TO DO STAKEHOLDER MEETINGS
WITH THE DISABILITY COMMUNITY
SPECIFICALLY AND OF COURSE NOT
TO FORGET THE COMPOUNDED ISSUES
OF THOSE WITH INTERSECTIONAL
DISPARITIES AS WELL.
SO THAT'S WHAT WE'LL BE DOING.
THAT'S THE COMMUNITY WE'RE HERE
TO SERVE AND WANT TO BE
SENSITIVE TO WHAT THEY WOULD
LIKE TO SEE FRANKLY AND HOW
WE'LL MAKE OUR CHOICE.
WE WERE SURPRISED BUT THERE'S A
LOT OF REASONS WHY.
SOME COULD BE NOT UNDERSTANDING
BUT I THINK WE'LL FIND OUT BY A
DEEPER DIVE.
THAT'S WHY WE COMPLETELY DELAYS
THIS.
AND IS TARA HERE?
SHE'LL TAKE OVER.
SHE'S DOING THE REAL WORK.
>> YOU HIT ON SOME REALLY
CRITICAL POINTS AND EXACTLY WHAT
WE'RE THINKING ABOUT HERE.
I WANTED TO MENTION WE WERE
HOPING TO ARRANGE ROUNDTABLES
WITH THE COMMUNITY TO BETTER
UNDERSTAND ALL THE ISSUES.
THIS IS A SPACE THAT WE WORKED
IN SORT OF IN VARIOUS WAYS
ACROSS NIH FOR A LONG TIME AND
TRYING TO TAKE A STEP BACK AND
TAKE A BROADER PERSPECTIVE AND
COORDINATING WITH DIANA'S TEAM
AT NCRR AND THE DESIGNATION AS A
HEALTH DISPARITIES POPULATION
A
AND CENTERS IN PARTICULAR.
AND WE'RE GRATEFUL SOMEONE WHO
IS RETIRING FROM ACL WILL COME
TO NIH TO SERVE AS AN ADVISER
FOR US AND WILL BE A GREAT
SOURCE OF INFORMATION AS WE MOVE
FORWARD AND HELP US THINK HOW TO
ENGAGE WITH THE COMMUNITY MORE.
>> THANK YOU FOR THE OVERVIEW.
I HAD A SIMILAR QUESTION AROUND
THE WOMEN'S HEALTH INITIATIVE OR
THE WOMEN'S HEALTH FUNDING
OPPORTUNITIES.
I'M GOING TO DEFER TO BRIAN
BECAUSE YOU'LL BE ABLE IT MORE
ELOQUENTLY ADDRESS THE ISSUE.
IT SEEMS IN SOME WAYS THE
FRAMING OF THIS WORK IS A
PARADIGM THAT SUGGESTS ONLY TWO
GENDERS AND NEED IT THINK MORE
EXPANSIVELY AND TO ENSURE THE
IDENTITIES AND THE
INTERSECTIONAL WORK FOR
ESPECIALLY THE TRANS WOMEN AND
THE HEINOUS MORTALITY RATE OF
THAT POPULATION IS ALSO INCLUDED
IN THIS WORK.
INCLUDED IN THE WAY THIS IS
ROLLED OUT AND THE WAY WE FOCUS
AND ENSURE THIS WORK ADDRESSES
THESE POPULATIONS.
I JUST WANTED TO MAKE SURE THAT
THAT WAS SAID BECAUSE AS A
PRIMARY CARE PHYSICIAN I'M
EXCITED ABOUT THE CARE
INITIATIVE HOWEVER, IN MY OWN
PRACTICE I SEE THE DISPARITIES
AND INEQUALITIES THAT
REVERBERATE BEYOND WHAT'S
HAPPENING UNDER THE SKIN AND
INFLUENCED BY THE ENVIRONMENT IN
WHICH WHERE SEXUAL AND GENDER
MINORITIES ARE SITUATED.
>> WONDERFUL COMMENT AND THANK
YOU FOR THAT.
I'M GOING TO -- I'LL GO STRAIGHT
TO TARA AND MAYBE DIANA TO SAY A
FEW WORDS ON THIS.
BEFORE WE DO, I WANT TO SAY
WE'RE ISSUING A CHANGE TO OUR
REPORTING OF RACE OF SEX TO
INCLUDE NOW GENDER.
AND I DON'T KNOW IF YOU'VE BEEN
ABLE TO SEE THAT BUT TO START
COLLECTING THIS DATA WHICH IS
CRITICAL.
AT LEAST THE FIRST ITERATION OF
THIS COMPLEX PROCESS IS NOW
GOING OUT WHICH I THINK WE'LL
FIND INCREDIBLY HELPFUL JUST
UNDERSTANDING THAT AND HOPEFULLY
IT WILL BE SELF-REPORTED BUT
WE'RE GETTING READY TO LAUNCH
THAT AND TARA.
>> I WAS GOING TO EMPHASIZE AS
THEY HIT ON THE CRITICAL POINTS.
THAT INTERSECTIONALITY WITH
CORY'S QUESTION COMES UP IN A
LOT OF DIFFERENT SPACES.
WE KNOW FOR SURE THAT THE SOCIAL
DETERMINATES OF HEALTH PLAY A
MAJOR ROLE IN CONTRIBUTING TO
HEALTH OUTCOMES IN THOSE
POPULATIONS.
I WAS JUST E-MAILING EARLIER
THIS MORNING WITH OUR DIRECTOR
OF THE SEXUAL AND GENDER
MINORITY RESEARCH OFFICE TALKING
ABOUT OUR APPROACH TO OUR SOJI
DATA ACTION PLAN MONICA REFERRED
TO.
MORE TO COME ON THAT BECAUSE
THAT WILL BE COMING UP SOON.
THAT OFFICE HAS DONE GREAT WORK
IN THIS SPACE IN PARTNERING WITH
VARIOUS OFFICES AND INSTITUTES
AND CENTERS ACROSS NIH BECAUSE
AS WE'VE SAID THERE'S A LOT OF
INTERSECTIONALITY HERE AND
EVERYONE ISN'T JUST ONE THING
AND WE NEED TO TRY TO MAKE SURE
WE CAPTURE THOSE ASPECTS.
>> I'M DIANA BIANCHI THE
DIRECTOR OF THE NATIONAL
INSTITUTE OF CHILD HEALTH AND
DEVELOPMENT.
WE COVER A SUBSTANTIAL AMOUNT OF
WOMEN'S HEALTH RESEARCH.
WE ARE ALSO LOOKING AT THE
SPECTRUM OF REPRODUCTIVE HEALTH
AND ARE LOOKING AT THINGS FROM A
LENS OF WHAT SET OF OCCRGANS YO
ARE BOTHER WITH AND A SEPARATE
DISCUSSION FROM HOW YOU IDENTIFY
SOCIALLY.
WE HAVE RESEARCH IN BOTH AREAS
AND LOOKING AT THE
INTERSECTIONALITY.
I'D LIKE TO MAKE NOTE OF THE
FACT THAT ALL OF OUR LANGUAGE,
PARTICULARLY AROUND MATERNAL
HEALTH HAS GONE FROM PREGNANT
WOMEN TO PREGNANT INDIVIDUALS TO
REFLECT THE FACT THAT WE
ACKNOWLEDGE NOT EVERYONE WHO
IDENTIFIED AS A WOMAN IS HAVING
A CHILD.
>> I DON'T THINK IT'S LOST ON
ANYONE IN THE ROOM OR LISTENING
IN PART MY COMMENTS ARE TO
ENCOURAGE THE RESEARCH AS
SCIENTISTS IN THIS AREA AND NOT
BE SWAYED BY THE FORCES THAT ARE
OUTSIDE OF OUR SCIENTIFIC
COMMUNITY THAT ARE ASKING US TO
MUTE THE IMPORTANCE OF THIS
POPULATION.
>> I CAN HANDLE THAT ONE.
AND THE POINT IS WE NEED ALL
PEOPLE TO LIVE LONG AND HEALTHY
LIVES.
THERE'S TWO THINGS.
WE NEED ALL PEOPLE TO LIVE LONG
AND HEALTHY LIVES AND WE CAN'T
DO THAT BY OURSELVES.
WE HAVE TO DO THAT BY ENGAGING
WITH THEM.
SO WE HAVE TO MEET THEM WHERE
THEY ARE.
SO IT'S KIND OF IRRELEVANT WHAT
ANY OF US THINK.
IT'S ABOUT WHO WE'RE HERE TO
SERVE AND WE'RE HERE TO SERVE
EVERYBODY.
THAT'S THE WAY I THINK WE AVOID
GETTING INTO THAT TRAP.
>> I HAD A COMMENT RELATED.
I THINK IT'S COMMENT HOW
CLINICAL TRIALS IN OBSERVATIONAL
STUDIES SUCH AS ALL OF US ARE
TRYING TO BE AS INCLUSIVE AS
POSSIBLE IN EVEN MAKE UP FOR THE
DISPARITIES RELATES TO
RECRUITMENT THAT HAVE HAPPENED
IN THE PAST.
THERE WILL STILL BE DIFFERENCES
ON THE OTHER HAND WHEN A DRUG
GETS APPROVED, FOR EXAMPLE, IT
GETS APPROVED FOR EVERYONE.
AND THE EFFICACY AND THE
SURVEILLANCE OF THE EFFICACY AND
EVEN SAFETY OF THOSE MEDICATIONS
IN UNDER REPRESENTED GROUPS IS
ONLY SOMETHING WE CAN FIND OUT
FROM REAL WORLD EVIDENCE AND
ELECTRONIC HEALTH RECORDS AND
THOSE THINGS.
IT'S A GOOD COMPLEMENT TO ALL
THE GREAT WORK AND CLINICAL
TRIALS AND OBSERVATIONAL TRIALS
AND COMPONENTS IS KNOWING WHEN
SOMETHING'S AVAILABLE TRULY TO
EVERYONE.
>> THANK YOU.
WE'RE HEAVILY ENGAGED WITH THE
FDA AS A PARTNER.
THEY HAVE A LEGISLATIVE MANDATE
TO USE REAL WORLD DATA TO MAKE
REGULATORY DECISIONS.
THE CLINICAL CARE ENVIRONMENT
DOESN'T ALLOW THE BEST DATA TO
BE DELIVERED.
WE HAVE VERY SERIOUS DEDICATED
ISSUES AND BE INCLUSIVE OF THE
DATA.
WE CAN NO LONGER AFFORD TO HAVE
DATA ONLY FROM BIG MAJOR MEDICAL
CENTERS.
WE'VE GOT TO GET DEEP IN
COMMUNITIES.
ONE OF THE MAIN USES IS WHAT YOU
TALKED ABOUT A USE CASE WITH THE
FDA TO DO POSTMARKET WORK ALONG
THE LINES OF WHAT YOU'RE
INTERESTED IN.
>> I'D INCLUDE PREGNANT AND
LACTATING WOMEN AND CHILDREN.
DR. BERTAGNOLLI SHOWED INNING
HER SLIDES THE BEST PRACTICE FOR
PHARMACEUTICALS FOR CHILDREN ACT
AS WELL AS INFORMATION ON THE
CUDDLE STUDY BUT WITH HAVE A
LARGE INITIATIVE LOOKING AT
MEDICATIONS TAKEN BY PREGNANT
AND LACTATING PEOPLE BECAUSE
THERE IS A SHOCKINGLY LOW AMOUNT
OF INFORMATION AVAILABLE FOR
THOSE POPULATIONS SO THEY ARE
UNDER SERVED AS WELL.
AND THE BEST PHARMACEUTICALS IN
CHILDREN'S ACT WHICH IS
SUPPORTED BY ALL OF THE I.C.s
HAS SITES IN WELL OVER 100
DIFFERENT HOSPITALS AND CLINICS
THAT SERVE UNDER SERVED
CHILDREN.
SO WE'RE TRYING AS BEST AS WE
CAN TO ADDRESS THOSE
POPULATIONS.
>> ARE THERE QUESTIONS?
I DON'T SEE HANDS RAISED IN OUR
VIDEO TEAM EITHER SO -- YES, WE
DO.
OKAY.
DR. CHANG.
>> THANK YOU FOR THE GREAT WORK
AT THE NIH.
THE BUDGET -- IS IT JUST TO
UNDERSTAND SPECIFIC CUTS JUST TO
THE PROGRAMS YOU HIGHLIGHTED OR
DO YOU EXPECT AN IMPACT ON
EXTERNAL AWARDS AND PAY LINES.
I WANT TO SUPPORT THE
OPPORTUNITIES FOR EARLY CAREER
SCIENTISTS.
>> I CAN TAKE THIS ONE.
THOUGH WE'RE GRATEFUL FOR OUR
SUPPORTERS IN APPROPRIATIONS
THERE WAS NOT ONLY LIMITED
AMOUNT IN SHARING BUT THERE'S
BEEN SOME PAIN DISTRIBUTED IN
MANY OF THE I.C.s IN THE
DIRECTION OF TYPE 5 REDUCTIONS.
AND NCI IS AN EXAMPLE AND
OTHERS.
ONE THING WE DID DO THOUGH IS WE
ALL UNDERSTAND IN A TIME OF
CHALLENGE THE SEGMENT OF OUR
COMMUNITY THAT GETS HURT WORSE
ARE YOUNG PEOPLE.
WE MADE A DEDICATED EFFORT
ACROSS ALL THE INSTITUTES AND
CENTER TO RESERVE FUNDING TO
YOUNG INVESTIGATORS AND JUNIOR
RESEARCHERS.
EVERY YEAR WE'VE SET A TARGET
GOAL FOR FUNDING OF YOUNG
INVESTIGATORS.
LAST YEAR WE EXCEEDED OUR GOAL
BY 200 OR SOMETHING.
THIS YEAR WE HAVE THE SAME GOAL.
IN SPITE OF THE REDUCTION WE
MADE A COMMITMENT TO TRY TO
REACH AND HAVE NO REDUCTIONS FOR
JUNIOR INVESTIGATORS.
YES.
>> THEMATICALLY CONNECTED I KNOW
IN THE LAST FEW MEETINGS WE'VE
BEEN SOMEWHAT BRINGING UP
CONCERN THE PAY FOR POSTDOCS AND
MAY SEE POSITIONS START TO
RETRACT.
WE MAY NOT HAVE A COMPLETELY
HOLISTIC VIEW BUT WONDERING IF
WE HAVE EARLY INDICATIONS OF
WHAT'S HAPPENING?
>> I DON'T THINK WE CAN TELL
YET.
I DON'T.
IT'S TOO NEW.
THESE WERE JUST ANNOUNCED A
MONTH AGO.
WE KNOW WHEN WE FUND RESEARCH,
IT OFTEN -- THE FUNDING IS
SUPPLEMENTED BY ACADEMIC
INSTITUTIONS TO A SIGNIFICANT
DEGREE.
WE ACKNOWLEDGE THAT.
EVERY TIME I GET TO MEET WITH A
DEAN OR UNIVERSITY PRESIDENT OR
UNIVERSITY CHAIR I ASK THEM WHAT
HELPS THEM MORE.
WHAT'S THE BETTER APPROACH AS
FAR AS BECAUSE THEY'RE THE ONLY
ONES WHO KNOW HOW THIS WILL ALL
WORK.
WHAT HELPS YOU MORE?
IS IT LOWER GRANTS OR BIGGER
GRANTS?
OF COURSE IT'S MORE AND BIGGER.
OF COURSE.
UNIFORMLY EVERY TIME IT'S BEEN
MORE BECAUSE THE OPPORTUNITY TO
HAVE SOMEONE HAVE THE NIH
FUNDING WITH THE OTHER BENEFITS
IS MORE IMPORTANT THAN HAVING
THE GRANT AS BIG AS IT NEEDS TO
DO EVERYTHING THEY NEED FOR THAT
PERSON.
I CAN TELL YOU A LOT OF THEM ARE
ALREADY SUPPLEMENTING THE
POSTDOC SALARIES, OF COURSE.
I THINK SALARY IS AN ISSUE WHERE
WE KNOW THAT OUR GRANTEE
INSTITUTIONS ARE BACK FILLING A
LOT FOR THE WORK.
ANY OTHER QUESTIONS?
IF THERE ARE NONE WE'LL STOP AND
TAKE A BREAK AND TAKE A PICTURE,
I THINK.
CHARLIE, ARE YOU READY FOR US?
WE'LL COME OFF SCREEN FOR A
WHILE.
WE'LL GO TO A BREAK HERE AND GO AHEAD WITH OUR PICTURE.
>> WELCOME BACK, EVERYONE.
WE'LL CONTINUE ON WITH OUR
MEETING.
FIRST I'D LIKE CONSIDER --
DR. ALSATR TO INTRODUCE HERSELF.
>> I SHOULD HAVE TAKEN THE ME
METRO.
I'M A PROFESSOR OF MEDICINE AND
EPIDEMIOLOGY AT COLUMBIA
UNIVERSITY AND ALSO AN EXECUTIVE
VICE PRESIDENT FOR COLUMBIA
GLOBAL.
IT'S A PLEASURE TO BE WITH YOU
TODAY.
>> THANK YOU VERY MUCH.
NEXT, WE'LL HEAR FROM DR. MARIE
BERNARD AND DR. ALISON GAMMIE ON
AN UPDATE FROM THE ACD WGD
CONSORTIUM.
>> IT'S MY PLEASURE TO CO-CHAIR
THE WORKING GROUP WITH
DR. KIMBALL AND WE HAD A VIBRANT
MEETING AGAIN YESTERDAY.
THE TWO ITEMS I'D LIKE TO BRING
FORWARD ARE UPDATE ON THE NIH
UNITE INITIATIVE.
THERE WAS A PROGRESS REPORT
RELEASED YESTERDAY AND
DR. GAMMIE WILL GIVE A FINAL
REPORT ON THE DIVERSITY
CONSORTIUM.
THE NEWS FROM UNIT IS WE'VE HAD
TRANSITION IN LEADERSHIP.
WE'RE GRATEFUL TO DR. BYRNES AND
DR. JOHNSON AND DR. TABAK WHO
HAVE BEEN CO-CHAIRS OF UNITE AND
HAD THE PRIVILEGE OF CHAIRING
WITH THEM THE LAST MANY YEARS.
DR. JOHNSON AND DR. TABAK WERE
FOUNDING CO-CHAIRS AND
DR. SCHWETZ SERVED IN BETWEEN
WHEN DR. TABAK WAS THE ACTING
DIRECTOR OF THE NIH.
WE HAD VIBRANT LEADERSHIP.
WE'VE BEEN ON A JOURNEY THAT'S A
MARATHON AND TRANSITIONING TO
NEW LEADERSHIP.
I'M JOINED BY DR. AYEBO FROM THE
NATIONAL INSTITUTE OF ALLERGY
AND INFECTIOUS DISEASE AND MS.
HOOVER FROM THE NATIONAL NIDDK
AND MOHAMMED AND CAMILLE HAVE
BEEN ON FROM THE ONSET AND
PRIVILEGED TO WORK WITH THEM AS
WE LOOK AT UNITE 2.0.
UNITE IS A PEOPLE-FOCUSSED AND
DATA-DRIVEN INITIATIVE.
DATA IS DRIVING ALL THAT WE'RE
DOING INCLUDING LOOKING AT
HEALTH DISPARITIES, MINORITY
HEALTH RESEARCH NOTE AT ALL TO
SUPPLANT THE WORK AND WE'VE
LOOKED AT OUR INTERNAL AND
EXTERNAL WORKFORCE WITH A RACIAL
EQUITY LENS YOU'LL SEE IT'S LED
TO INITIATIVES AND A RISING TIDE
LIFTS ALL BOAT AND I THINK WHAT
YOU'LL SEE IN WHAT'S BEEN
DEVELOPED.
FROM THE STANDPOINT OF MINORITY
HEALTH AND HEALTH DISPARITIES
RESEARCH, OUR GOAL HAS BEEN TO
ENSURE NIH INSTITUTES AND
CENTERS PRIORITIZE HEALTH
MINORITY RESEARCH WITHIN
CLINICAL TRIALS AND HUME
ANSUBJECT RESEARCH.
OUTCOMES ARE THINGS LIKE THE
COMMUNITY PARTNERSHIPS TO
ADVANCE SCIENCE AND SOCIETY
INITIATIVE THIS COMMON FUND
INITIATIVE WAS UNITE INSPIRED.
WHEN IT WAS INTRODUCED TO THE
DIRECTOR IN 2021 THERE WAS A
COMMON FUND INITIATIVE FOR A
TRANSFORMATIVE HEALTH
DISPARITIES RESEARCH AND BY THE
END OF FISCAL YEAR 21 A PROMISE
TO FUND PROJECTS AND UNITES WERE
CLEAR IT WAS NOT SUFFICIENT
INVESTMENT AND OVER THE COURSE
OF YEARS A BROADER RANGE OF
NIHERS WORKED ON THE COMPASS
INITIATIVE ON 25 COMMUNITIES
ACROSS THE COUNTRY LAST FISCAL
YEAR GOT FUNDING FROM UNITE --
NIH TO PROBLEMS THEY IDENTIFIED
THAT MAY ACCOUNT FOR DISPARITIES
AND IT'S A WONDERFUL EXPERIMENT
FOR NIH TO SEE IF WE CAN MOVE
THE NEEDLE.
ADDITIONALLY RECENTLY WE HAVE
BEEN ABLE TO ANNOUNCE A CHANGE
IN THE WAY THAT WE ACCOUNT FOR
MINORITY HEALTH AND HEALTH
DISPARITIES RESEARCH.
WE HAVE RCDC SYSTEM THAT
ACCOUNTS FOR EVERYTHING WE DO.
THESE AREAS WERE MANUALLY
CURATED IN THE PAST.
UNITE MEMBERS WITH NIMHD AND THE
OFFICE OF BUDGET HERE AT NIH AND
OTHER NIHERS WORKED HARD TO
DISENTANGLE THE DATA REPORTED
THAT WAS MINORITY HEALTH
DISPARITIES RESEARCH VERSUS
INFRASTRUCTURE VERSUS WORKFORCE
AND THERE'S NOW FIVE INITIATIVES
TO ALLOW FOR GREATER REPORTING.
THOSE ARE HIGHLIGHTED IN THE
PROGRESS REPORT.
MANY MORE JUST GOOGLE NIH INE
ITE AND -- RESEARCH ECO SYSTEM.
WE HAD HIGHLIGHTED IN THE
PROGRESS REPORT THOUGH IT'S
UNITE ADJACENT.
IT HAD GOTTEN STARTED DEVELOPING
UNITE AND THE NOFO WAS UNVEILED
BEFORE BEING REVEALED TO THE
PUBLIC AND THE INSTITUTE FOR
TRANSFORMATIONAL INFORMATIONAL
PROGRAM INTENDED TO BRING
FACULTY WHO HAVE INTEREST IN
DIVERSITY, EQUITY AND INCLUSION
AND ACCESSIBILITY.
IT'S NOT NECESSARILY THEIR
RESEARCH FOCUS BUT AN
APPLICATION AND THE ENVIRONMENT
IS EVALUATED TO MAKE SURE IT'S
AN INCLUSIVE ENVIRONMENT WHERE
ALL FEEL THEY BELONG AND GIVEN
EXTRA RESOURCES AND SUPPORTED TO
THE POINT OF BECOMING TENURED
FACULTY MEMBERS WITH FUNDING.
WE DID THE SOLICITATION IN THREE
WAYS.
THE THIRD AND LAST SET WERE
AWARDED LAST SUMMER.
YOU SEE THE DISTRIBUTION OF THE
INSTITUTIONS INVOLVED HERE.
WE THINK IT'S A GREAT
EXPERIMENT.
IF SUCCESSFUL AT THE END OF
THIS -- IT'S SUPPORTED FOR
INITIALLY FIVE YEARS AND CAN BE
RENEWED FOR ANOTHER FIVE YEARS
AS ALWAYS THE CASE WITH COMMON
FUND INITIATIVES AND IN 10 YEARS
IT WILL BE 180 NEW FACULTY WHO
HAVE BEEN SUPPORTED BY THE
INITIATIVE.
ADDITIONALLY, IN FISCAL YEAR '23
THERE WERE NUMEROUS
ANNOUNCEMENTS THAT WERE PUT OUT
RELATED TO UNITE.
THERE WAS A SCIENCE EDUCATION
PARTNERSHIP AWARD PROGRAM WHICH
IS SOMETHING THAT WAS LED BY THE
NATIONAL INSTITUTE OF GENERAL
MEDICAL SCIENCES FOR MANY YEARS
AS THE K-12 PROGRAM AND EXPANDED
TO INCLUDE NOW 19 CENTER AND
OFFICES.
THE IMPORTANCE OF THIS BEING
THAT WE RECOGNIZE SCIENCE
IDENTITIES DEVELOP VERY EARLY
POTENTIALLY AS EARLY AS MIDDLE
SCHOOL AND OUTREACH IS
IMPORTANT.
THAT'S UNITE RELATED INITIATIVE
AS WELL AS RESEARCH WITH
ACTIVITIES RELATED TO DIVERSITY.
THIS IS AN R01 OPPORTUNITY FOR
FOSTERING AND BELONGING AND NOT
HAD A SIGNIFICANT NIH GRANT
AWARD.
THIS GIVES THE OPPORTUNITY FOR
R01 FUNDING AND A GRANT FOR
RESOURCE LIMITED NIHS.
DEFINITION VARIES BY THE NOFO
AND DEFINED AS AN INSTITUTION
WITH $50 MILLION OR LESS ON
AVERAGE OF NIH GRANT FUNDING IN
THE PRIOR THREE YEARS.
THE THING UNIQUE ABOUT THIS
OPPORTUNITY IS NOT ONLY THIS
FOCUS ON RESOURCE-LIMITED
INSTITUTIONS BUT THE OPPORTUNITY
FOR GRANT FUNDING WHETHER THE
INSTITUTION IS LOOKING AT
RESEARCH OR FOR HIGHER LEVEL
EDUCATIONAL PROGRAMS.
THERE'S THE STRENGTHENING
RESEARCH OPPORTUNITIES FOR
GRANTS WITH LESS THAN $3 MILLION
IN RPG FUNDING RECOGNIZING IT
THE HELP MAKE SURE WE'RE
BRINGING IN A BROAD RANGE OF
SCIENTISTS AND TRAINEES.
THEN THERE'S THE AND
INSTITUTIONS AWARD.
DESIGN TO ALLOW INSTITUTION TO
LOOK BACK AT THEIR ENVIRONMENT
AND MAKE SURE IT'S INCLUSIVE OF
ALL AND ALL FEEL THEY BELONG AND
WHERE THEY FIND DEFICITS TO MAKE
INTERVENTIONS TO ADDRESS THIS.
IN MY MIND THIS IS KIND OF LIKE
THE FIRST INITIATIVE LIGHT.
IF AN INSTITUTION IS ABLE TO
COMPETE FOR THE THESE FUNDS AND
GET THEM FROM NIH THEY CAN
POTENTIALLY GET PHILANTHROPIC
FUNDS AND BASICALLY HAVE A FIRST
AWARD.
IN TERMS OF PROMOTING EQUITY IN
THE INTERNAL NIH WORKFORCE.
WE LOOKED AT OPPORTUNITIES THERE
AND HAVE A LOT OF DATA AND
ENCOURAGE YOU TO READ WHAT'S IN
THE REPORT.
A COUPLE HIGHLIGHTS.
WE HAVE THE MEDICAL STUDENT
OPPORTUNITIES FOR ADVANCED
RESEARCH INITIATIVE STARTED LAST
YEAR.
IT WAS A PARTNERSHIP WITH THE
NIH OFFICE OF INTRAMURAL
TRAINING AND EDUCATION AND
BROUGHT 16 MEDICAL STUDENTS TO
NIH CAMPUS LAST SUMMER AND
REPLICATED AGAIN THIS YEAR BEING
LAUNCHED LAST MONTH.
A GREAT OPPORTUNITY TO BRING
PEOPLE TO NIH AND SHOW THEM THE
FUTURE OF RESEARCHERS.
WE ALSO LOOKED AT OUR DATA AND
SAW AMONG OUR STAFF WERE THE GS5
TO 11 LEVEL.
QUITE A DIVERSE GROUP OF STAFF
MEMBERS.
THERE WEREN'T AS MANY
OPPORTUNITIES FOR TRAINING AS
FOR THOSE OF THE GS4 AND HIGHER
LEVEL.
WE ESTABLISHED AN EMERGING
TALENT PROGRAM TO MAKE SURE WE
GIVE THOSE OPPORTUNITIES TO
FACILITATE UPWARD MOBILITY FOR
ALL OF OUR STAFF.
AND THEN IN THE REALM OF DATA WE
HAVE HAD EXTERNAL AND INTERNAL
SCIENTIFIC COMMUNITY TO GET AN
UNDERSTANDING OF WHAT IS BEING
TRANSLATED TO ACTION, WHAT NEEDS
TO BE LEARNED.
WHAT OTHER INFORMATION WE NEED
TO GATHER.
WE HAD SOME 1300 PARTICIPANTS
AND REFER YOU TO THE DOCUMENT
REFERENCED WITHIN THE PROGRESS
REPORT.
IT'S LED TO A NUMBER OF THINGS I
MENTIONED BEING DONE WITHIN
UNITE.
I'LL CLOSE BY SAYING THAT
UNITE'S COMMITMENT FOR BEING A
DRIVING FORCE WITHIN NIH IS
UNWAVE
UNWAVERING.
I WOULD ALSO LIKE TO MENTION
THAT THERE WAS ALSO A REPORT ON
PROGRESS FROM PERFECT MY OFFICE.
>> I'LL TALK ABOUT THE
CONSORTIUM AS IT MOVES INTO ITS
FINAL PHASE.
TO GIVE YOU A LITTLE BIT OF THE
BACKGROUND OF THE PROGRAM.
IN 2012, THE NIH ADVISORY
COMMITTEE TO THE DIRECTOR
WORKING GROUP ON DIVERSITY IN
THE BIOMEDICAL RESEARCH
WORKFORCE MADE RECOMMENDATIONS
IN RESPONSE TO STUDIES SHOWING
DISPARITIES IN THE NIH GRANT
FUNDED WORKFORCE.
AS PART THEIR IMPLEMENTATION OF
THE RECOMMENDATIONS THE COMMON
FUND ESTABLISHED THE ENHANCING
DIVERSITY OF THE NIH FUNDED
WORKFORCE ALSO KNOWN AS THE
DIVERSITY PROGRAM CONSORTIUM.
I'LL BE REFERRING TO THAT
THROUGHOUT THE TALK.
AS THE DIVERSITY CONSORTIUM DPC
FOR SHORT.
THE IDEA WAS TO TAKE A
SCIENTIFIC APPROACH IN ENHANCING
DIVERSITY IN THE BIOMEDICAL
WORKFORCE AND THERE'S STUDENT
LEVEL, FACULTY AND INSTITUTIONAL
LEVEL IMPACT.
ANOTHER INNOVATION IS TO
INTEGRATE SOCIAL SCIENCE
RESEARCH IN PARTICULAR
PSYCHOSOCIAL INTERVENTIONS IN
THE PROFESSION OF TRAINING AND
MENTORING STUDENT AND FACULTY.
A KEY COMPONENT IS RIGOROUS
ASSESSMENT AND EVALUATION OF
THESE TRAINING AND MENTORING
INTERVENTIONS THAT ARE
IMPLEMENTED ACROSS THE PROGRAM.
AND THE LONG-TERM IMPACT OF THE
PROGRAM WILL BE IN THE BROAD
DISSEMINATION OF THE
EVIDENCE-INFORMED APPROACHES TO
TRAINING AND MENTORING.
IT WAS IN TWO PHASES.
NIH PLAYED A MAJOR ROLE AS THEY
WERE ALL COOPERATIVE AGREEMENTS.
THERE WERE THE BUILDING
INFRASTRUCTURE LEADING TO
DIVERSITY SITES.
TEN SITES ACROSS THE COUNTRY.
REPRESENTING DIFFERENT
INSTITUTION TIMES AND STUDENT
POPULATIONS.
THE NATIONAL MENTORING NETWORK
COMPRISED OF RESEARCH AND
SERVICE CORPS FOR THE FIRST
INCLUDING MENTOR AND GRANT
WRITING TRAINING AND THE
COORDINATION CENTER AS THE NAME
SUGGESTS THEY COORDINATED THE
ACTIVITIES AND CONSORTIUM WIDE
EVALUATIONS AS WELL AS HELPING
EACH SIGHT DEVELOP THEIR OWN
PROTOCOLS.
HIGHLIGHTS FROM PHASE 1 FOR THE
DIVERSITY PROGRAM CONSORTIUM.
THEY DEVELOPED PLANS SITE
SPECIFIC AND CONSORTIUM WIDE.
THEY GOT TOGETHER AND DEFINED
HALLMARKS OF SUCCESS.
THIS IS AN IMPORTANT SET OF
HALLMARKS AVAILABLE TO THE
BROADER COMMUNITY FROM THIS
POINT ON.
THEY ALSO DEFINED WHAT MEASURES
THEY WOULD USE TO VERIFY THEY
HAD REACHED THE HALLMARKS OF
SUCCESS.
THEY CREATED A DATA SHARING
AGREEMENT, DEVELOPED AND
EMPLOYED A TRACKING SYSTEM AND
THERE'S A NUMBER OF PROGRAMS
GOING ON AND HAD A TRACKING
SYSTEM DEVELOPED TO KEEP TRACK
OF ALL THE INTERVENTIONS.
THEY COLLECTED SITE SPECIFIC AND
CONSORTIUM-WIDE DATA AND THOUGH
IT WAS EARLY DAYS IN THE PROGRAM
ABLE TO PUBLISH METHODS PAPERS
AND EARLY OUTCOMES.
I MENTIONED THERE ARE TWO
PHASES.
AS THEY TRANSITIONED INTO THE
SECOND PHASE IT WASN'T A
COMPETITION AND THE FOCUS WAS ON
COMPLETION OF THE STUDIES,
SUSTAINABILITY, SO MOVING FROM A
PLACE OF NIH FUNDING TO
SUSTAINABLE ACTIVITIES AND
DISSEMINATING OUT THE FINDINGS.
THE BUILD SITE AND COORDINATION
AND EVALUATION CENTER CAME IN
THROUGH A LIMITED COMPETITION
BUT ALL DID COMPETE.
THE NATIONAL RESEARCH MENTORING
NETWORK RESOURCE CENTER WAS AN
OPEN COMPETITION SITES ACROSS
THE COUNTRY WERE ELIGIBLE TO
APPLY FOR.
THEN THERE WAS A NEW DIRECTION
FOR THE NATIONAL RESEARCH
MENTORING NETWORK IN THE SECOND
PHASE TO FOCUS ON DEVELOPING A
STRONG EVIDENCE BASE FOR
EFFECTIVE MENTORING
INTERVENTIONS.
IN THE CENTER OF THESE RESEARCH
AWARDS WAS A DATA COORDINATION
CENTER.
THEN THERE WAS A NEW COMPONENT
ADDED FROM THE LESSONS LEARNED
IN PHASE 1 A CAPACITY BUILDING
COMPONENT TO RECOGNIZE THAT
SITES NEED TO DEVELOP CAPACITY
TO BE ABLE TO ACCEPT AND
ADMINISTER NIH AWARDS AND THERE
WAS ALSO A DISSEMINATION AND
TRANSLATION AWARD AND THE IDEA
WAS TO START TO DISSEMINATE OUT
SOME EARLY SUCCESSES IN THE
INTERVENTIONS.
SO FOR PHASE 2 SOME HIGHLIGHTS
WERE THAT THE BUILD SITES
CONTINUED THEIR INTERVENTIONS
AND THEY TRANSITIONED INTO
SUSTAINABILITY LEVELS OF
ACTIVITIES.
THEY COLLECTED BOTH SITE LEVEL
AND CONSORTIUM WIDE DATA.
FOR THE NATIONAL RESEARCH
MENTORING NETWORK RESOURCE
CENTER, THEY BOTH SUSTAINED
EFFORTS THEY HAD INITIALLY AND
EXPANDED SOME OF THEIR OFFERINGS
DURING THIS TIME.
THE NATIONAL RESEARCH MENTORING
NETWORK RESEARCH PROJECTS WERE
IMPLEMENTED AND CONDUCTED AND
THE DATA COORDINATION CENTER
BROUGHT THE GROUP TOGETHER TO
HAVE COMMON MEASURES THEY WERE
USING IN THEIR STUDIES.
THEY COORDINATED DATA COLLECTION
AND THEY'RE MANAGING A DATA
PORTAL.
THERE WAS A SPONSORED
DEVELOPMENT PROGRAM THAT WILL BE
CONTINUED WITH THE UNITE
INITIATIVE AND THAT'S GREAT IT
HEAR IT'S HELPING INSTITUTIONS
DEVELOP THEIR SPONSORED
PROGRAM'S ADMINISTRATION.
THE DISSEMINATION AND
TRANSLATION AWARDS WERE LAUNCHED
AND IMPLEMENTED AND WE WERE ABLE
TO TEST INTERVENTIONS AT OTHER
SITES ACROSS THE COUNTRY.
IMPORTANTLY THEY BEGAN TO
PUBLISH MANY OF THEIR
INTERVENTIONS AND OUTCOMES AND
I'LL TALK ABOUT THAT IN A
MINUTE.
IN THE NEXT FEW SLIDE I'D LIKE
TO GIVE YOU A SCALE AND SCOPE OF
THE COMPLEX PROGRAM.
IT'S GOING TO BE CHALLENGING IN
THE TIME WE HAVE BUT TURNING TO
THE RESOURCE CENTERS YOU CAN SEE
FROM THE DASHBOARD OVER 30,000
ACTIVE MEMBERS ARE INVOLVED IN
THE MENTORING NETWORK AND THAT
INCLUDES NEARLY 16,000 MENTEES
SPECIFICALLY.
AS I MENTIONED THERE ARE
RESOURCES AVAILABLE,
OPPORTUNITIES TO MENTOR WITH
INDIVIDUALS WITH A MENTORING
RELATIONSHIP WITH INDIVIDUALS
ACROSS THE COUNTRY AS WELL
COURSES AVAILABLE ON THE SITE.
FOR THE NATIONAL RESEARCH
MENTORING NETWORK, NRMN THEY
REACHED THOUSANDS OF INDIVIDUALS
THROUGH OUTREACH OF VARIOUS
PROGRAMS AND YOU CAN SEE THE
RANGE ACROSS THE PATHWAY OF
INDIVIDUALS REACHED AND GOING
DOWN ON THE LEFT COLUMN BROADER
RANGE OF ACTIVITIES THEY MADE
AVAILABLE TO THE BROADER
COMMUNITY.
FOR THE NATIONAL RESEARCH
MENTORING NETWORK RESEARCH
PROJECTS AN DATA COORDINATION
IT'S TRYING TO GIVE A SENSE OF
THE SCOPE OF STUDIES.
THERE WERE 11 RESEARCH INCLUDING
OVER 6,000 PARTICIPANTS REACHING
ABOUT 350 DIFFERENT
ORGANIZATIONS ACROSS THE
COUNTRY.
AND IMPORTANTLY THEY'VE ALREADY
HAVE A STRONG PUBLICATION BASE
CONTRIBUTING TO THE EVIDENCE
BASE.
TO GIVE A SENSE OF THE
INDIVIDUALS WHO PARTICIPATED,
YOU CAN SEE THE DEMOGRAPHICS OF
THE INDIVIDUALS AND IN THE
SPIRIT OF THE DIVERSITY PROGRAM
CONSORTIUM YOU CAN SEE A BROAD
RANGE OF DEMOGRAPHIC GROUPS
PARTICULARLY INDIVIDUALS FROM
UNDER REPRESENTED GROUPS THAT
WERE INVOLVED IN THESE STUDIES.
TURNING TO THE BUILD INITIATIVE
TO GIVE A SENSE ONCE AGAIN OF
THE NATIONAL SCOPE, WE'RE
SHOWING YOU A GLIMPSE OF THE
BUILD PROGRAM INVOLVING OVER 100
INSTITUTIONS.
THERE WERE 10 PRIMARY BUILD SITE
AND THERE WERE RESEARCH
INTENSIVES SHOWN IN BLUE OR
PATHWAY PARTNERS SHOWN IN
YELLOW.
AND YOU CAN ONCE AGAIN GET A
SENSE OF THE NATIONAL REACH.
IN TERMS OF THE CHARACTERISTIC
OF THESE INSTITUTIONS,
IMPORTANTLY A LARGE NUMBER OF
THESE INSTITUTIONS HAVE A
HISTORIC MISSION OF SERVING
INDIVIDUALS FROM UNDER REPRE
REPRESENTED GROUPS AND SHOWING
THE DASHBOARD OF THESE
INSTITUTIONS HERE.
I MENTIONED THEY'VE ALREADY
STARTED TO PUBLISH THEIR
INTERVENTIONS AND THIS IS AGAIN
A DASHBOARD SHOWING THE RANGE OF
PUBLICATIONS.
EACH COLOR REPRESENTS A
DIFFERENT BUILD SITE FOR A
SITE-SPECIFIC INTERVENTION.
THE DARK GRAY BARS REPRESENT THE
CONSORTIUM WIDE EVALUATION
PRODUCTS THAT WERE PUBLISHED AND
THE LIGHT BLUE BARS REPRESENT
SPECIAL ISSUE PUBLICATIONS
COMING ACROSS THE CONSORTIUM TO
PUBL
PUBLISH.
I'VE BEEN MENTIONED THEY TOOK A
SCIENTIFIC APPROACH TO
UNDERSTANDING TRAINING AND
MENTORING INTERVENTIONS.
I JUST WANTED TO GIVE YOU AN
EXAMPLE.
SHOWING YOU A LOGIC MODEL FOR A
STUDENT LEVEL.
THEY WOULD GATHER INDEPENDENT
VARIABLES INCLUDING DEMOGRAPHIC
INFORMATION, OTHER ACADEMIC
INDICATORS.
AND THEN ACROSS THE VARIOUS
SITES THERE ARE ACTIVITIES AND
INTERVENTIONS THE STUDENTS WOULD
GO THROUGH.
THEN I MENTIONED THE HALLMARKS
OF SUCCESS.
HERE'S SOME CONSIDERED THE SHORT
TO MEDIUM HALLMARKS OF SUCCESS.
THEY INCLUDE THINGS YOU MIGHT
THINK INCLUDING ENGAGEMENT IN
RESEARCH, SCIENTIFIC
PRESENTATIONS BUT THEY ALSO HAVE
SOME OF THOSE PSYCHOSOCIAL
FACTORS I MENTIONED EARLIER IN
THE TALK INCLUDING ENHANCED
SCIENCE IDENTITY AND SENSE OF
BELONGING.
AND COMPLETION OF AN
UNDERGRADUATE BIOMEDICAL DEGREE
AUTHORSHIP ON PAPERS AND
MATRICULATION TO GRADUATE SCHOOL
AND SO ON.
TO GIVE A SENSE OF THE TYPES AND
SCOPE FOR THE CONSORTIUM WIDE
STUDY FOR THE BUILD SITES, A HAD
A MAJOR SOURCE IS THROUGH
SURVEYS AND SHOWING THE
INDIVIDUALS WHO PARTICIPATED IN
TWO OR MORE OVER 37,000 STUDENTS
AND DATA THEY WERE ABLE TO
OBTAIN REACHING NEARLY 35,000
INDIVIDUALS.
I MENTIONED THE TRACKER EARLIER.
YOU SEE IT HERE NEARLY 600
ACTIVITIES AND A LARGE NUMBER OF
ROSTERS OVER 30,000
PARTICIPANTS.
ONCE AGAIN YOU CAN GET A SENSE
OF THE COMPLEXITY OF THIS
PROGRAM AND HOW MUCH WORK WENT
INTO THESE VARIOUS
INTERVENTIONS.
AN IMPORTANT SOURCE OF DATA IS
ALSO THE QUALITATIVE DATA
GATHERED TO THE BUILD SITES
INCLUDING INTEGRATED CASE
STUDIES, FOCUS GROUPS WITH
STUDENTS AND FACULTY AND
INTERVIEWS OF INSTITUTIONAL
LEADERS AND SUPPLEMENTING THAT
WITH RECORDS.
IT'S A LONGITUDINAL STUDY
TRACKING STUDENT AND FACULTY
CAREERS.
THERE'S DETAILED INFORMATION ON
PARTICIPATION AND ACTIVITIES.
A BROAD GROUP OF STUDENTS AND
FACULTY PARTICIPANTS ARE
INVOLVED.
THERE'S AN EXTREMELY LARGE
COMPARISON GROUP.
THIS WILL ALLOW FOR PROPENSITY
MATCHING SO THERE'S A STRONG
COMPARATOR GROUP.
THE OUTCOMES ON THE HALLMARKS OF
SUCCESS INCLUDE PSYCHOSOCIAL,
EDUCATIONAL AND CAREER-FOCUSSED
OUTCOMES.
TO DATE THE ENHANCED DIVERSITY
STUDY HAS 95 PUBLICATIONS OR
DATA BRIEFS AVAILABLE TO THE
PUBLIC.
IMPORTANTLY, AN IMPORTANT
COMPONENT FOR COMMON FUND
INITIATIVES IS THROUGH A
SUSTAINABILITY PIECE IN THEY'RE
PLANNING TO DEPOSIT THE DATA IN
THE INTERUNIVERSITY CONSORTIUM
FOR POLITICAL AND SOCIAL SCIENCE
RESEARCH.
THIS IS A PLACE SOCIAL
SCIENTISTS GO FOR DATA AND THE
GREAT THING IS THIS WILL LEAVE
IT AVAILABLE TO RESEARCHERS FOR
A LONG TIME TO COME.
TO GIVE A FEW GLIMPSES INTO THE
DATA IT WILL BE HARD TO GIVE A
SENSE OF IT ALL.
TO ONCE AGAIN SHOW THE
DEMOGRAPHICS OF THE INDIVIDUALS
WHO ARE INVOLVED.
THERE ARE TWO SETS OF BUILD
STUDENTS.
THE BUILD STUDENTS WHO EITHER
RECEIVE A FULL STIPEND OR
REMISSION AND THOSE WHO RECEIVED
A WAGE MAYBE THEY DID A SUMMER
PROGRAM OR WORKED IN A LAB
PART-TIME AND THOSE ARE SHOWN IN
THE MIDDLE COLUMNS AND THERE'S
COMPARATOR DATA FROM THE
NATIONAL SCIENCE FOUNDATION ON
INDIVIDUALS EARNING BIOMEDICAL
DEGREES.
THE DIFFERENT COLORS REPRESENT
DEMOGRAPHIC GROUPS AND WHAT YOU
CAN SEE IN THE GRAPH IS THAT THE
PARTICIPATION OF THE BUILD
STUDENTS HAS LARGE
REPRESENTATION OF INDIVIDUALS
WHO ARE TYPICALLY UNDER
REPRESENTED IN THE BIOMEDICAL
RESEARCH WORKFORCE.
THIS WAS VERY MUCH A GOAL OF THE
PROGRAM WAS TO UNDERSTAND WHAT
FACTORS AFFECT PERSISTENCE FOR
INDIVIDUALS IN THIS GROUP.
TO GIVE YOU A 30,000-FOOT VIEW
OF THE CHANGES YOU CAN SEE AT
THE THREE LEVELS WILL START WITH
THE INSTITUTIONAL CHANGE IN
OFFERINGS AND POLICIES.
THIS INCLUDES CULTURALLY
RELEVANT TRAINING FOR ENGAGING
DIVERSE POPULATIONS.
COMPREHENSIVE ADVISING AND
OVERSIGHT OF STUDENT SUCCESS.
INNOVATIVE FORCES EMBEDDED IN
THE CURRICULUM.
SUPPORTIVE LEARNING COMMUNITIES,
ALTERATIONS AND RENOVATIONS TO
STIMULATE RESEARCH.
FINANCIAL SUPPORT FOR STUDENTS
AND FACULTY RESEARCH.
IMPORTANTLY TRAINING AND
MENTORING REWARDED IN TENURE AND
PROMOTION DECISIONS.
SO TAKING TRAINING AND MENTORING
SERIOUSLY AT THE ORGANIZATION.
SOME EXAMPLES OF FACULTY
FINDINGS INCLUDE INCREASED
RESEARCH PRODUCTIVITY AND
SHOWING A DASHBOARD HERE.
ONCE AGAIN THE DIFFERENT COLORS
REPRESENT DIFFERENT BUILD SITES
AND PILOT RESEARCH PROGRAM WHERE
THEY GAVE PILOT PROJECT MONEY
FOR RESEARCH AND SEEING
PUBLICATIONS FROM THE PILOT
PROJECTS.
ALSO IMPORTANTLY, THIS ALLOWED
THESE FACULTY MEMBERS TO SECURE
INDEPENDENT FUNDING AND LOOKING
AT THE DIFFERENT INSTITUTES AND
CENTERS IN THE BLUE CIRCLES.
THE SIZE REPRESENTS HOW MANY
AWARDS WERE GIVEN TO FACULTY FOR
THEIR SUBSEQUENT RESEARCH.
EXAMPLES OF THE STUDENT FINDINGS
INCLUDE THAT INCREASES TO
EXPOSURE AND MENTORSHIP AND
PARTICIPATION AND INTENDED TO
PURSUE BIOMEDICAL RESEARCH
CAREERS AND FIRST YEAR PERS
PERSISTENCE IN SCIENCE MAJORS.
I'LL GIVE ONE EXAMPLE OF A DATA
BRIEF FOR THE PSYCHOSOCIAL
MEASURES.
YOU'RE SEEING FOUR DIFFERENT
WAYS THE SURVEYS ASK ABOUT
SCIENCE IDENTITY.
YOU'LL SEE THE BUILD
PARTICIPANTS ON TOP AND THEN
BELOW THAT THE COMPARATOR
GROUPS.
AND THE LEFT MOST BARS REPRESENT
STRONGLY AGREE WITH THE
STATEMENT TO THE RIGHT STRONGLY
DISAGREE AND ACROSS THE MEASURES
THERE WAS A SIGNIFICANT
DIFFERENCE BETWEEN THE BUILD
PARTICIPANTS AND THE COMPARATOR
GROUPS IN TERMS OF SCIENCE
IDENTITY WITH A STRONG P VALUE
AND THIS IS PARTLY BECAUSE IT'S
SUCH A LARGE STUDY AND THERE'S A
LARGE SAMPLE SIZE.
IT'S BEEN ASSOCIATED WITH THE
BIOMEDICAL WORKFORCE AND SEEING
THAT IN TERMS OF MORE TANGIBLE
OUTCOMES INCLUDING EARNING A
BIOMEDICALLY RELATED DEGREE.
ONCE AGAIN THE COLORS ARE
REFLECTING DIFFERENT BUILD SITES
OVER TIME AND THESE ARE STUDENTS
WHO OBTAIN A BIOMEDICAL
BACHELOR'S DEGREE.
THE RATE ISN'T BECAUSE IT'S
GOING DOWN.
IT'S REFLECTING HOW THE SITES
ARE MOVING TO MORE SUSTAINABLE
MODELS OVER TIME.
FOR THE NUMBER OF STUDENTS
THEY'RE ABLE TO SUPPORT.
THE TAKEAWAY FROM THIS IS 93%
EITHER GRADUATED YOUR ON THEIR
WAY TO GRADUATING AND IF COMPARE
THIS GOING FROM 29% GRADUATION
TO 57% THEY'RE DOING
SIGNIFICANTLY BETTER IN TERMS OF
EARNING BIOMEDICAL DEGREES.
ANOTHER IMPORTANT INDICATOR THE
STUDENTS ARE INTERESTED IN
RESEARCH IS THEY GO ON TO EARN
HIGHER DEGREES IN THE BIOMEDICAL
FIELD.
TO DATE 47% OF BUILD GRADUATES
ARE CURRENTLY SEEKING HIGHER
DEGREES OR HAVE EARNED A HIGHER
DEGREE AND IT'S SHOWING YOU ON
THE RIGHT SIDE THE VARIOUS
DEGREES THEY GO ON TO SEEK
INITIALLY WHAT WE WILL NEED TO
WAIT FOR TIME AS WE KNOW IT CAN
TAKE 10 TO 15 YEARS TO HAVE A
FULL SENSE OF HOW MANY STUDENTS
WILL GO TO EARN HIGHER DEGREES.
I WANT TO ZOOM IN AT THE IMPACT
AT THE WILL HAVE LEVEL AND THERE
WAS A SOCIAL MEDIA CAMPAIGN
CALLED THE FACE OF SCIENCE WHICH
IS VERY LIKELY TO LIVE ON BEYOND
THE DIVERSITY PROGRAM
CONSORTIUM.
IF YOU HAVE A MOMENT TO CHECK
THE TESTIMONIALS YOU REALIZE THE
INCREDIBLE IMPACT OF THE PROGRAM
AND THE STUDENTS DO A GREAT JOB
AND IT'S INCREDIBLY INSPIRING.
NOW THE MOST IMPORTANT PART FOR
OUR COMMON FUND INITIATIVE HOW
DO WE SUSTAIN THE EFFORTS BEYOND
THE FUNDING.
MARIE DID AN AMAZING JOB TALKING
ABOUT THE UNITE INITIATIVE AND A
WONDERFUL SYNERGY WHERE THE
INITIATIVES PARTICULARLY AT THE
INSTITUTIONAL LEVEL HAVE ALLOWED
FOR SUSTAINABILITY OF ALL THE
EFFORTS OF THE DIVERSITY PROGRAM
CONSORTIUM.
AND THE PUBLICATIONS AND OTHER
LESSONS LEARNED ARE GOING TO BE
HIGHLY IMPACTFUL FOR THE UNITE
INITIATIVE.
I WANT TO QUICKLY SHOW YOU THERE
ARE WAYS TO SUSTAIN EVERY
ELEMENT OF THE DIVERSITY PROGRAM
CONSORTIUM AT THE STUDENT,
FACULTY AND INSTITUTIONAL LEVEL.
SOME ARE LONG STANDING PROGRAMS
FOR STUDENT SUPPORT.
SOME ARE LONG STANDING AND NEW
INITIATIVES THAT AFFECT
INDIVIDUALS ATHE THE FACULTY
LEVEL.
RESEARCH PROJECT GRANTS
INDIVIDUALS ARE ABLE TO APPLY
FOR AND NOW A LOT OF ACTIVITY
AROUND SUPPORTING INSTITUTIONS
PARTICULARLY EMERGING
INSTITUTIONS.
IN TERMS OF RESOURCES DEVELOPED
AND AVAILABLE TO THE BROADER
COMMUNITY.
THERE ARE WAYS THROUGH WHAT WE
CALL RESEARCH INSTITUTION OR R25
AWARDS AT IQMS THE INNOVATIVE
PROGRAMS TO ENHANCE RESEARCH
TRAINING AS A WAY TO MAKE THE
RESOURCES AVAILABLE TO THE
BROADER COMMUNITY.
IN TERMS OF THE SCIENTIFIC
APPROACH WE HAVE TWO RESEARCH
PORTFOLIOS AT NIGMS AND
INSTITUTES AND CENTERS HAVE BEEN
LOOKING AT INTERVENTIONS AND
WORKFORCE DATA ANALYSIS.
IF THAT THE THE TYPE OF
RESEARCH THE INDIVIDUALS WANT TO
DO.
SO ANYBODY INTERESTED IN
CONTINUING THE SCIENTIFIC
COMPONENT THERE'S A PLACE FOR
THEM.
FINALLY AND IMPORTANTLY
DISSEMINATION.
HOW TO GET THE WORD OUT TO THE
BROADER COMMUNITY.
ONCE AGAIN THEY ARE CAN COME IN
FOR INNOVATIVE PROGRAMS TO
ENHANCE RESEARCH TRAINING AND
THEN THERE ARE NATIONAL MEETINGS
THEY COULD HOST FOR THE BROADER
SCIENTIFIC COMMUNITY.
I JUST WANT TO END ONCE AGAIN
WITH SAYING THIS WAS AN AMAZING
NIH WIDE INITIATIVE.
A HUGE NUMBER OF INDIVIDUALS
HAVE PUT ANYWHERE FROM 8 TO 10
YEARS OF THEIR LIFE TO MAKING
SURE THIS WAS A SUCCESSFUL
PROGRAM.
THIS DOES NOT INCLUDE THE
THOUSANDS OF PEOPLE INVOLVED
ACROSS THE COUNTRY WHO
IMPLEMENTED THIS INNOVATIVE
PROGRAM AND CAME TOGETHER AS A
CONSORTIUM AND HAVE HAD
SIGNIFICANT IMPACT.
SO WITH THAT I'LL END AND MARIE
AND I CAN TAKE QUESTIONS.
6:
>> THANK YOU, DR. GAMMIE.
SO THIS IS NOW OPEN FOR
DISCUSSION.
QUESTIONS?
DR. KIMBALL.
>> I'LL JUST COMMENT FROM OUR
MEETING YESTERDAY AS WELL AND
REITERATE THE COMMENTS I MADE TO
SOME EXTENT, WHAT AN AMAZINGLY
COMPREHENSIVE LONG-TERM
SUSTAINABLE HAS BEEN TAKEN FOR
ALL OF THIS.
IT'S AT EVERY LEVEL ALL THE
TIME.
EVERYTHING FROM PEOPLE TO
FUNDING TO RESOURCES AND I
PARTICULARLY LOVE THE
SUSTAINABILITY SLIDE WHICH
ANSWERS THE QUESTION IF WE HELP
IN ONE DIMENSION OR ONE PHASE,
HOW DO WE MAKE SURE WE HAVE
ENDURING IMPACT.
WE TALKED A LITTLE BIT YESTERDAY
ABOUT THE SURROGATES FOR SUCCESS
AS WE SEE PEOPLE MOVE THROUGH
THE PIPELINE IN THE EARLY
SUCCESSES THAT WE'RE IDAHO --
IDENTIFYING PEOPLE CELEBRATE
THAT AND LOOK AT WHERE THE
IMPACT IS LIKELY TO BE AND WHERE
IT WILL GO IN THE FUTURE.
BRAVO.
IT'S INCREDIBLE TO WORK FOR.
>> I WILL ECHO WHAT YOU SAID
IT'S INCREDIBLE EFFORTS.
CONGRATULATIONS TO BOTH OF YOU.
IT'S MEASURING SUSTAINABILITY
STRICTLY AND OFTEN COMPLICATED
AND OFTEN THE FUNDING ENDS AND
THEN THERE'S NO OTHER MECHANISMS
FOR MEASURING SUSTAINABILITY
BEYOND THE END OF THE FUNDING OF
A PROJECT OR INITIATIVE.
I'M CURIOUS HOW YOU ARE PLANNING
TO MEASURE SUSTAINABILITY BEYOND
THE INITIATIVE?
>> THAT'S CHALLENGING.
WE CAN TRACK HOW THEY'RE DOING
AND I CAN GIVE YOU SOME EARLY
SUCCES
SUCCESSES BECAUSE THEY KNEW THE
END WAS COMING.
THE AWARDS END THIS MONTH BUT
THEY OFFICIALLY END THE END OF
THIS MONTH.
THEY CAME IN FOR THE STUDENT
PROGRAMS.
SO THIS INCLUDES THE URISE
PROGRAM TO SUSTAIN THE STUDENT
INITIATIVES.
INDIVIDUALS ARE COMING IN FOR
RESEARCH ON INTERVENTIONS GRANT
TO CONTINUE THE SCIENTIFIC
COMPONENT OF IT.
WE'RE ALREADY -- WE CAN ALREADY
TRACE SOME OF THE SUSTAINABILITY
INTEREST.
I'LL BE CANDID, THEY WON'T BE
ABLE TO SUSTAIN IT AT THE LEVEL.
THESE WERE BIG AWARDS.
IT'S BEEN HEARTENING TO SEE THE
ORGANIZATIONAL COMMITMENT
BECAUSE THEY GATHERED DATA AND
IT WAS SO TANGIBLE DATA THEY
COULD BRING EITHER TO THEIR
STATE LEGISLATORSS OR OTHER
ENDOWMENT ENTITIES AND WHEN YOU
COLLECT DATA YOU CAN LEVERAGE
OTHER FUNDING SOURCES BECAUSE
PEOPLE SEE THE DATA AND RESPOND
TO IT.
THAT ALSO IS A GREAT LESSON
LEARNED.
WE'LL DO OUR BEST.
IT'S GOING TO BE CHALLENGING BUT
I THINK IT'S AN IMPORTANT THING
TO TRY TO MEASURE.
>> THANK YOU.
DR. CORBIE.
>> MY QUESTION HAS TO DO WITH
SCALABILITY.
MUCH OF WHAT YOU TALKED ABOUT
ONE SUSTAINABILITY HAS TO DO
WITH MAINTAINING FUNDING FOR
EXISTING PROGRAMS.
WHAT WORK HAS BEEN DONE FOR THE
COMPONENT TO BE SCALED TO
INSTITUTIONS, ORGANIZATIONS THAT
ARE INTERESTED IN DOING THIS
WORK BUT EITHER DON'T NEED TO
APPLY FOR ADDITIONAL FUNDING
MIGHT BE AT A POINT BUT A POINT
TO BE ABLE TO IMPLEMENT THAT
MINIMAL COMPONENT OF THE
INTERVENTION.
THE FIRST AWARDS WERE GREAT IF
YOU GOT THEM.
THERE'S A TREMENDOUS GROUND
SWELL OF INTEREST IN THE FIRST
AWARDS.
WHAT CAN WE TAKE FROM THE FIRST
AWARDS AND BUILD GRANTS AND ALL
THESE OTHER AWARDS THAT WE CAN
THEN PUT INTO PLACE AND I'M
PARTICULARLY INTERESTED IN THE
MEASURES OF SUCCESS THAT CAN BE
LEVERAGED AT AN INSTITUTIONAL
LEVEL TO SPREAD ACROSS AND MAYBE
HAVE AS WE THINK ABOUT OUR
DIVERSITY PLANS OR WHAT HAVE YOU
THAT PEOPLE PEOPLE CAN START TO
IMPLEMENT NOW SO THEY'RE READY
AND CAN DEMONSTRATE THAT THEY'RE
POISED TO BE ABLE TO GO FOR
WHATEVER THE NEXT THING IS.
>> THANK YOU BECAUSE IT GIVES ME
A CHANCE TO TALK ABOUT WHAT I
THINK WILL BE PAIN IMPORTANT
DELIVERABLE AND THAT INCLUDES
THE HALLMARKS OF SUCCESS.
THEY THOUGHT CAREFULLY AT THE
STUDENT FACULTY AND
INSTITUTIONAL LEVEL WHAT ARE
INDICATORS OF SUCCESS.
THEN HOW TO MEASURE THEM AND IF
YOU'RE A SCIENTIST YOU WANT TO
MEASURE IT BUT SAY YOU DON'T
HAVE THE SURVEY QUESTIONS OR
IDEAS OF WHICH INSTITUTIONAL
DATA TO GATHER.
THAT IS A HUGE DELIVERABLE.
A GROUP GOT TOGETHER AND SAID
LET'S USE COMMON MEASURES TO
AGGREGATE OUR DATA AND IF YOU
WANT TO MEASURE SCIENCE IDENTITY
OR SOME OF THE PSYCHOSOCIAL
MEASURES OR SO YOU'RE NOT HAVING
TO REINVENT THE WHEELS FOR THE
INTERMEDIARIES OF SUCCESS OR
HALLMARKS OF SUCCESS.
>> AND SPEAKING SPECIFICALLY TO
THE QUESTION OF FIRST, SHAMELESS
SELF-PROMOTION.
THERE WILL BE A WORKFORCE
DIVERSITY SEMINAR A WEEK FROM
TODAY IN HOW TO FOSTER INCLUSIVE
ENVIRONMENTS.
DR. GAMMIE WILL BE A SPEAKER
TALKING ABOUT THE DIVERSITY
PROGRAM CONSORTIUM AND TO THE
P.I. ON THE EVALUATION CENTER
FIRST WILL BE TALKING ABOUT
WHERE THINGS STAND WITH REGARDS
TO THAT INITIATIVE AS WELL AS
THE INVESTIGATOR FROM ROCHESTER
INSTITUTE OF TECHNOLOGY ONE OF
THE WINNERS OF THE DEIA PRIZE
TALKING PROMOTING INCLUSIVE
ENVIRONMENTS FOR DEAF AND HARD
OF HEARING POPULATIONS AND
ANOTHER ABOUT A PROGRAM SIMILAR
TO WHAT WE'RE DOING WITH FIRST.
IF YOU'RE INTERESTED UP HEARING
HOW THIS CAN BE MORE GENERALIZED
GO TO DIVERSITY.NIH.gov AND I'D
MENTION THE ACT NOFO.
THAT FUND IING AND I CAN APPLY R
THE FIRST AWARD.
>> THANK YOU FOR THE PHENOMENAL
WORK.
THOSE WHO HAVE LED SCIENTIFIC
TEAMS OVER THE YEARS SEE HOW
TEAMS COME UP WITH SCIENTIFIC
PROBLEMS AND IT'S IMPORTANT TO
TACKLE THE ISSUES OF THE DAY AND
HAPPY TO SEE THE PROGRAMS.
I WANT TO SAY CAN WE DO MORE AS
WELL AND HAVE A COUPLE
SUGGESTIONS ABOUT THAT.
SO RECENTLY THE NORTHWESTERN
INSTITUTE FOR SEXUAL AND GENDER
HEALTH AND WELL-BEING WHICH I
DIRECT CONVENED LGBTQ PEOPLE AND
HAVE A REPORT THAT CAME OUT DAYS
AGO ON THE TOPIC.
I WANT TO MENTION A COUPLE
THINGS FROM THE REPORT AND ASK
ABOUT THE INCLUSION OF THE
POPULATION.
THE CDC DATA SHOWS AMONGST YOUNG
PEOPLE, 15% IDENTIFY AS LGB AND
ADDITIONAL YOUNG PEOPLE
IDENTIFYING AS TRANSGENDER OR
NON BINARY.
THE RESEARCH THAT EXISTS TODAY
SHOWS LGBTQ ARE 20% LESS
REPRESENTED IN S.T.E.M. FELDS
AND BE IN S.T.E.M. OCCUPATIONS
WHEN THEY ENTER CAREERS AND MORE
LIKELY TO EXPERIENCE HARASSMENT
AND LGBTQ PEOPLE AT THE NIH HAVE
THE HIGHEST LEVEL OF HARASSMENT
AT OUR OWN INSTITUTION AND THIS
STARTS EARLY.
LIKE THE DATA YOU SHOWED ON
RACIAL AND ETHNIC MINORITY
YOUTH, THIS STARTS EARLY IN THE
PIPELINE.
OUR RESEARCH WITH HIGH SCHOOL
STUDENTS SHOWS LGBTQ TEENS
EXPERIENCE BULLYING AND VIOLENCE
AND THOSE EXPERIENCES ARE
NEGATIVELY ASSOCIATED WITH THEIR
INTENTIONS TO ENTER S.T.E.M.
CAREER.
YOU'VE SHOWN THE PERSUASIONS
MATTER.
WHAT I GET IS A LOT OF QUESTIONS
FROM EARLY CAREER RESEARCHERS
THAT ARE LGBTQ ASKING WHERE THEY
FIT IN THE WORK YOU JUST
DESCRIBED.
I'D LIKE IT HEAR A LITTLE BIT
ABOUT THAT AND MAYBE OFFER A FEW
RECOMMENDATIONS.
THE ENHANCED DIVERSITY STUDY AND
NATIONAL RESEARCH MENTORING
NETWORK STUDIES ARE GATHERING A
LOT OF INFORMATION AND HAVE
THOUGHTFUL QUESTIONS.
AND BECAUSE OF THE STATISTICAL
POWER INTERSINCE -- INTERSENSES
AND SUCH.
THE DATA IS THERE AND --
INTERSECTION DATA IS THERE AND
WE'RE IN THE EARLY DAYS OF
ANALYZING THIS AND KNOWING THE
DATA ARE THERE AND TRACK THE
INTERVENTIONS AND OUTCOMES OF
INDIVIDUALS FROM THIS GROUP I
THINK IS REALLY KEY.
ONE OF THE CHALLENGES IS THAT
AND WE HAVE NATIONAL DATA OF
UNDER REPRESENTATION AND IT'S
WONDERFUL TO SEE YOUR STUDIES
AND THINK WE CAN PUSH FORWARD TO
HAVE ACKNOWLEDGEMENT OF
DIFFERENT CATEGORIES.
WE ALWAYS SAY THE NIH DIVERSITY
ARE JUST EXAMPLES.
THEY'RE NOT EXCLUSIONARY.
IT DOESN'T MEAN THEY'RE THE ONLY
GROUPS UNDER REPRESENTED AND I
WANT TO HIGHLIGHT THAT.
WE ALWAYS TRY TO HIGHLIGHT THAT.
THOSE ARE EXAMPLES.
DON'T THINK THAT MEANS NIH
DOESN'T CARE ABOUT THE BROAD
RANGE OF GROUPS UNDER
REPRESENTED IN THE BIOMEDICAL
RESEARCH WORKFORCE.
AND THE DATA IS THERE WE JUST
HAVE TO HAVE MORE ANALYSES.
>> I WOULD LOVE TO GET UPDATES
ON HOW THOSE ANALYSES ARE
COMING.
SOME IN OUR COMMUNITY WOULD SAY
WE HEARD ABOUT DATA BEING
COLLECTED IN THE PAST AND
SOMETIMES IT DOESN'T GET
ANALYZED OR REPORTED SO GLAD TO
HEAR THAT'S THE INTENTION AND
GRAD WE CAN GET AN WHY UP
UPDATE AND IT BE MORE CLEAR
ABOUT INCLUSION WHEN COLLECTED
AND WONDER WHETHER A SUB GROUP
OF THIS COMMITTEE FOCUSSED ON
THIS ISSUE WOULD BE HELPFUL TO
DIG IN MORE DEEPLY.
>> I THINK IT REPRESENTS WE HAVE
THE DATA AT THE DIVERSITY
PROGRAM IN TERMS OF COMMENTS AND
THOSE SORTS OF THINGS I THINK
THERE'S ALWAYS AN OPPORTUNITY TO
COLLECT MORE DATA.
>> DR. MOORE.
>> YES.
I CONCUR WITH WHAT'S BEEN SAID
IN TERMS OF THE MENTORSHIP
INITIATIVE IT REFLECTS
COMPREHENSIVE STRATEGY AND I DO
WONDER IN TERMS OF HOW MIGHT THE
INITIATIVE IMPACT OR HOW MIGHT
YOU BE ABLE TO FRAME THE
BENEFITS OF THESE PARTICULAR
INITIATIVES AROUND HEALTH
DISPARITIES.
SO I SEE THE LARGER PROBLEM WE
HAVE HEALTH DISPARITY ISSUES AND
ONE IS STRATEGY IS DIVERSIFYING
THE WORKFORCE AND INCREASING THE
PIPELINE TO THE WORKFORCE FROM
THE LIVED EXPERIENCE AND WE CAN
THE PROBLEMS IN DISPARITY.
I'M WONDER IF YOU HAVE THOUGHT
ABOUT THE WONDERFUL WORK YOU'VE
DONE AND THE IMPACTS YOU HAD IN
TERMS OF CAPACITY BUILDING AND
PRESENTATIONS AND INCREASED
SCIENCE IDENTITY AND ALL THESE
POSITIVE OUTCOMES AS IT RELATES
TO RESEARCH SKILL BUILDING FOR
THESE PARTICULAR STUDENTS BUT
DOES THAT -- AND I UNDERSTAND
THE LONGITUDINAL STUDY AS YOU
STATED YOU MAY NOT BE ABLE TO
SEE IMPACTS EVEN WITH THE
SCIENTISTS UNTIL 10 OR 15 YEARS
LATER BUT IN TERMS OFF THE
INTERMEDIATE AND LONG-TERM
IMPACTS ON THE HEALTH EQUITY AND
HEALTH DISPARITIES HOW MIGHT WE
BE ABLE TO FRAME WHAT YOU'VE
DONE IN TERMS OF BENEFITS AND WE
HAVE THE PROBLEM DISPARITIES FOR
THOSE LONG-TERM IMPACT BY THE
WORK YOU'VE DONE AND SOMETHING
TO THINK ABOUT IN THE
LONGITUDINAL APPROACH I THINK IS
A VERY STRONG APPROACH.
AS YOU ALL PRESENTED ON EVERY
CORNER YOU TIPPED THE THOUGHTS
IN MY OPINION IN TERMS OF THE
STRENGTH AND VALIDITY OF THE
RESEARCH.
I THINK THE QUESTION IS SO WHAT,
RIGHT?
CAN WITH ARE -- WE REDUCE HEALTH
DISPARITIES.
>> WE'RE GATHERING THE DATA ON
THE TOPIC AREAS OF THE PILOT
PROJECTS AND THE STUDENT
RESEARCH TOPICS.
WE CAN START TO LOOK AT EARLY
DAYS.
THE RESEARCH IS WHAT FIELD
STUDENTS GO INTO.
I'LL GIVE AN ANECDOTE.
I KNOW IT'S NOT ALWAYS HELPFUL
BUT WITH PARTICIPATING IN ONE OF
THE BUILD MEETINGS AND STUDENT
TESTIMONIALS WHEN THEY'RE
INVOLVED IN CLINICAL STUDIES AND
GETTING OUT IN THE COMMUNITIES
AN GETTING INDIVIDUALS TO
PARTICIPATE THE FACT THEY'RE
FROM A SIMILAR GROUP AND THE
STUDENT RECRUITING THE STUDY
PARTICIPANTS RESONATES WITH THE
INDIVIDUALS WE HAVE HIGHER
PARTICIPATION.
IT'S ALL THE OBVIOUS THINGS YOU
CAN THINK OF.
AS A SCIENTIST WE'VE HELPED THE
STUDY BECAUSE I CAN INCREASE THE
PARTICIPATION I THINK WAS
IMPACTFUL AT THE STUDENT LEVEL
AND MAY INCREASE PERSISTENCE
GOING FORWARD.
THAT WAS A TANGIBLE CASE WHERE
PARTICIPATION MATTERED FOR THE
STUDENT.
THAT'S SOMETHING TO KEEP OUR EYE
ON AND IT'S FINE IF SOMEBODY
WANTS TO GO ON AND STUDY BASIC
SCIENCE.
THAT'S ALSO GREAT AND A WIN FOR
SCIENCE AS WELL.
YOU THINK THERE ARE WINS IN MANY
ARENAS.
>> I THINK WE'LL GO TO
DR. SOLOMON FIRST ON THE WEB.
WELCOME FIRST OF ALL AND DO YOU
WANT TO INTRODUCE YOURSELF AND
YOU PUT SOMETHING IN THE CHAT
WE'D LOVE TO HEAR.
>> THANK YOU AND I -- I'M SORRY
I COULDN'T BE THERE IN PERSON
BUT NICE TO HEAR WHAT YOU'VE
BEEN UP TO.
I'M TEISLA SOLMAN AT THE
UNIVERSITY OF ARIZONA IF THE
DEPARTMENT OF FAMILY MEDICINE
AND MEMBER OF THE CHOCTAW NATION
OF OKLAHOMA.
I WANT TO SAY IMPORTANT THAT WE
CONTINUE THE PATH AS WE ARE
GROWING YOUNG SCIENTISTS AND
I'VE DONE MANY OF THESE AND
PROUD OF THE FUNDING NIH
PROVIDED THROUGH MANY MECHANISMS
AND ONE FROM THE NATIONAL
INSTITUTE OF GENERAL MEDICAL
SCIENCES.
I'M OF THE AGE NOW AND HAVE
THESE JUNIOR FACULTY WORKING
WITH ME ON ALL OF THIS.
IT'S IMPORTANT WE SEE THE
EVIDENCE THE INFORMATION AND
DATA AND ANALYSIS TURN INTO
POLICIES AN PROTOCOLS INTERNALLY
AND EXTERNALLY THAT SUSTAINS AND
HOW DO WE DO THAT INTERNALLY
WHETHER THROUGH HIRING, WHETHER
IT'S THROUGH PROJECTS THAT WE DO
AND WITHOUT CREATE BEING QUOTAS
WE DON'T NEED QUOTAS BUT WE NEED
TO BUILD A CULTURE OF INCLUSION
THAT'S NATURALLY THERE.
THAT WOULD BE MY ENCOURAGEMENT
TO YOU.
THANK YOU.
>> OUR JOB IS TO SERVE ALL AND
THIS IS AN IMPORTANT EFFORT TO
REACHING THAT OUTCOME.
WE NEED SCIENTISTS AND FISSIONS
WHO REPRESENT ALL IN ORDER TO
SERVE ALL AND WANTED TO
CELEBRATE THE WORK BEING DONE.
I'M EXCITED WHEN I GET NEWS
FLASHES THAT SAY LOOK AMOUNT
WHAT NIH DISCOVERED WHETHER IT'S
A NEW PICTURE OF THE BRAIN OR
SOMETHING ALONG THE AREA OF
CANCER.
AIM -- I'M WONDERING HOW WE CAN
DO THE SAME JOB WITH THE VIGOR
AND SHARING WITH THE COMMUNITY.
THERE'S A FASCINATING POLL
YESTERDAY THAT SAID 1 OF 8 BLACK
AMERICANS FEEL INSTITUTIONS ARE
CONSPIRING AGAINST THEM.
WHERE WE WANT TO CLOSE GAPS
EXAMPLES OF THIS WORK AND
COMMUNITIES BEING AWARE THAT OUR
INSTITUTIONS ARE DOING MORE TO
DRAW EVERYBODY IN WHETHER IT'S
INNER CITY BALTIMORE OR OKLAHOMA
ON A FARM.
THIS IDEA THAT DRAMATIC FOCUS
EFFORTS OVER A DECADE OR MORE
ARE BEING DONE TOWARDS THIS.
I'M WONDERING HOW WE CAN COMMUNE
THIS MORE BROADLY AND HIGHLIGHT
IT WITH THE SAME VIGOR WE
HIGHLIGHT THE SCIENCE OR THE
BASIC SCIENCE OR CLINICAL
TRIALS?
>> IT'S A WONDERFUL POINT.
THERE WERE A GREAT TEAM OF
COMMUNICATION TEAMS ACROSS THE
SITES AND THEY WOULD PUT OUT
NEWSLETTERS AND HAD SOCIAL MEDIA
CAMPAIGNS AND OTHER SUCH THINGS.
WITH ALL FUNDING THAT'S COMING
TO AN END.
AND SO WE DO HAVE TO THINK ABOUT
WAYS TO HIGHLIGHT AND
PARTICULARLY AS THE RESEARCH
COMES OUT I LOVE THE IDEA OF
HAVING INTERVENTIONS RESEARCH
COMING OUT AS WELL IN THE
TRAINING SPACE AND THE
BEHAVIORAL INTERVENTIONS TO
INCREASE PERSISTENCE.
IT'S A WONDERFUL IDEA.
WE'LL CONTINUE TO THINK ABOUT
WAYS.
>> ANOTHER THING I THINK THAT IS
IT REALLY IMPORTANT WE CAN TAKE
TO HEART IS WHAT WE LEARNED HERE
WE NEED TO INTEGRATE TO
EVERYTHING WE DO.
IT'S NOT JUST WE DO THESE
INITIATIVES AND THAT'S THE ONLY
PLACE THIS HAPPENS.
WE NEED TO INTEGRATE THE
INSIGHTS INTO EVERYTHING WE DO.
CARE FOR HEALTH BEING ONE OF
THEM.
I CAN DEFINITELY TELL YOU WE
NEED THIS KIND AND THE OTHER
THING IS I AM SO OFTEN ASKED,
HOW ARE WE GOING TO BUILD TRUST
WITH PEOPLE?
THIS IS ONE OF THE MOST POWERFUL
THINGS WE CAN DO TO BUILD TRUST
WITH PEOPLE AND I WOULD ARGUE
THAT WE ALSO NEED TO EMBRACE THE
STUDENT WHO DOESN'T NECESSARILY
THINK THE WAY THE BIOMEDICAL
RESEARCH COMMUNITY THINKS IF YOU
SEE WHAT I MEAN.
IT'S ABOUT EDUCATION AND THESE
ARE BUILDING BRIDGES THAT HELP
BRING THEIR PERSPECTIVES IN AND
LAST OF ALL WE TALK ABOUT
DIVERSE PERSPECTIVES.
THAT MEANS WE REALLY BETTER MEAN
DIVERSE PERSPECTIVES INCLUDING
PERSPECTIVES THAT MAY NOT SIT
WELL WITH EVERYONE BUT MAKING
THAT ENVIRONMENT OKAY HAS TO BE.
YOU ALL KNOW WE'RE ALSO THINKING
ABOUT.
OKAY.
WELL, THIS HAS BEEN WONDERFUL.
I CAN'T THANK YOU ENOUGH FIRST
FOR THE PRESENTATION AND SECOND
FOR THIS REALLY WONDERFUL
DISCUSSION.
AND SO NOW WE ARE GOING TO TAKE
A BREAK FOR LUNCH AND WE'LL BE
BACK HERE 1:15.
BACK AT 1:15.
THANKS.
>> SO FOLKS WILL BE WALKED OVER
IF YOU CAN'T MAKE THE WALK AND
LET OUR STAFF KNOW AND THEY'LL
GET SOMETHING IF YOU GIVE A HINT
WHAT YOU WANT OTHERWISE YOU'LL
GET A MYSTERY WHAT.
I DON'T KNOW WHO IS DOING THE
WALKING.
>> I'M DOING THE WALKING.
>> MONICA WILL WALK YOU TO BI
BUILDING 10 AND HAVE STAFF FOLKS
TO ACCOMPANY YOU.
SEE YOU AT 1:15.
INITIATIVE ACCELERATING
DISCOVERY TOWARD CURES, JOHN
NGAI, WHO IS THE DIRECTOR OF THE
BRAIN INITIATIVE WILL BE
PRESENTING.
>> THANKS, VERY MUCH.
A PLEASURE TO BE HERE TO TELL
YOU ABOUT COOL THINGS GOING ON
IN THE NIH BRAIN INITIATIVE,
WHEN WE'RE CELEBRATING OUR TENTH
YEAR OF THE INITIATIVE.
THE HUMAN BRAIN IS THE MOST
POWERFUL AND ENERGY EFFICIENT
COMPUTER KNOWN TO HUMANKIND,
COMPRISES 86 BILLION NEURONS,
TWICE AS MANY NON-ANIMAL CELLS,
TOGETHER MAKE TRILLIONS OR
HUNDREDS OF TRILLIONS OF
CONNECTIONS AND THEY UNDERPIN
OUR SENSATION OF MOTOR FUNCTION,
COGNITION, CONSCIOUSNESS,
SPIRITUALLY, RETRIEVE MEMORIES,
THE THINGS THAT MAKE US UNIQUELY
HUMAN AND EACH OF US UNIQUE FROM
EACH OTHER.
THE HUMAN BRAIN'S VERY
COMPLEXITY MAKES IT VULNERABLE
TO DISEASE.
AN OVERARCHING GOAL IS TO
UNDERSTAND HOW THE HUMAN BRAIN
GIVES RISE TO COMPLEX BEHAVIORS,
HOW IT MALFUNCTIONS IN DISEASE.
A MAJOR CHALLENGE IN ACHIEVING
THIS GOAL IS LACK OF TOOLS TO
MONITOR, MAP, MODULATE ACTIVITY
IN NEURAL CIRCUITS.
AND WITHOUT THIS UNDERSTANDING
WE REMAIN FAR FROM FINDING CURES
FOR DEVASTATING DISORDER LIKE
ALZHEIMER'S, EPILEPSY, BINGING,
SUBSTANCE USE DISORDER, IT'S
QUITE A LOT.
IN THE MEANTIME 1 IN 3 AMERICANS
ARE LIVING WITH A DISORDER OF
THE NERVOUS SYSTEM, WHICH MEANS
ALL YOU FOLKS WATCHING ON THE
VIDEOCAST, YOU HAVE ALMOST
CERTAINLY A FAMILY LOVED OR
LOVED ONE LIVING WITH A BRAIN
DISORDER.
WE'RE ALL WAITING DESPERATELY
FOR CURES THAT CANNOT COME SOON
ENOUGH.
THIS IN A NUTSHELL WAS NUTSHELL
WAS BIND THE BEHIND BEHIND IN
2013 TO DEVELOP TOOLS AND
RESOURCES TO ACCELERATE
DISCOVERIES FOR MUCH-NEEDED
SECURES.
THE BRAIN INITIATIVE IS TO
REVOLUTIONIZE OUR UNDERSTANDING
BY ACCELERATING DEVELOPMENT AND
APPLICATION OF INTEGRATIVE
TECHNOLOGIES, ANNOUNCED BY THE
WHITE HOUSE IN 2013, FIRST
AWARDS IN 2014, I WAS ONE OF THE
LUCKY GRANTEES IN 2014.
THIS REPRESENTS A PARTNERSHIP
BETWEEN FIVE U.S. FEDERAL
AGENCIES AND PRIVATE
FOUNDATIONS, ALL THE EFFORTS
THAT NIH HAS UNDERTAKEN SINCE
2014 HAVE BEEN GUIDED BY TWO
BRILLIANT STRATEGIC PLANS,
COMMISSIONED FROM WORKING GROUPS
OF THIS BODY, THE BRAIN 2025
REPORT WHICH WAS CHAIRED BY
DOCTORS BARDEN AND NEWSOM, AND
ISSUED IN 2014, FOLLOWED FIVE
YEARS LATER BY THE REPORTS
ISSUED IN 2019.
EVERYTHING WE'RE DOING YOU CAN
TRACE BACK TO THESE VISIONARY
DOCUMENTS.
THIS INVOLVES 10 OF THE 27
INSTITUTES AND CENTERS, SITUATED
FOR CROSS-CUTTING AND
ACCELERATED DISCOVERY BEYOND
CAPABILITY OF A SINGLE INSTITUTE
OR SYNERGY, TAPPING INTO ENERGY
TO ADDRESS CHALLENGES BY
DISORDERS, BENEFITING RESEARCH
THAT FALLS OUTSITE ANY ONE I.C.
MISSION.
TO DEVELOP NEW TOOLS, TO ACHIEVE
THIS GOAL IT'S IMPORTANT TO
LEVERAGE EMERGING TECHNOLOGIES
TO ENABLE DISCOVERIES ABOUT
NEURAL CIRCUIT FUNCTIONS, TO USE
THIS AS FOUNDATION FOR
STRATEGIES, AND MOST IMPORTANTLY
TO DISSEMINATE AND DEMOCRATIZE
FOR BASIC DISCOVERY AND CLINICAL
APPLICATION FOR THE THE BENEFIT
OF ALL.
AS DR. BERTAGNOLLI SAID, OUR JOB
IS NOT FINISHED WITH
DISCOVERIES, WE HAVE TO GET
THESE OUT THERE.
IT'S BEEN REMARKABLY PRODUCTIVE,
WE FUNDED 1600, AWARDS, ACROSS
25 INSTITUTIONS, PUBLISHED OVER
BY NOW OVER 8500 PAPERS, IN A
THOUSAND JOURNALS, DIVERSITY OF
JOURNALS, YOU CAN SEE THE CURVE
IS CLIMBING.
WE'RE PROUD AND EXCITED ABOUT
ALL THE GREAT RESEARCH BEING PUT
OUT THERE. THE PORTFOLIO IS
DIVERSE.
WE MANAGE IN DIFFERENT DOMAINS.
ON THE LEFT SIDE ARE SCIENTIFIC
DOMAINS DEVELOPING TOOLS,
TECHNOLOGIES, RESOURCES FOR
IDENTIFYING AND UNDERSTANDING
CELL AND CIRCUIT FUNCTIONS.
THESE ARE THE CONNECTIONS
BETWEEN OUR EARS THAT MAKE
EVERYTHING HAPPEN.
WE'RE DEVELOPING ABILITY TO
RECORD ACTIVITY, TO SEE WHAT'S
GOING ON IN CIRCUITS, VERY
IMPORTANTLY TO MODULATE EITHER
BY CHEMICAL MEANS, OPTICAL OR
ELECTRICAL MEANS, TO MODULATE TO
TEST OR MAKE HUMANS HAVE A
HEALTHIER LIFE.
SYSTEMS NEUROSCIENCE IS
UNDERSTANDING OF HOW CIRCUITS
AND OUR BRAIN GIVE RISE TO
AMAZING BEHAVIORS AND FUNCTIONS.
VERY IMPORTANTLY ONE THING THAT
BRAIN IS FOCUSED ON, A CHALLENGE
ACROSS THE OTHER ICs, TRYING
TO UNDERSTAND SYSTEMS AND
BEHAVIORAL NEUROSCIENCE IN
HUMANS USING A LOT OF THESE
NOVEL TOOLS.
THERE ARE FOUR CROSS-CUTTING
AREAS WE SUPPORT THAT ENABLE ALL
THESE SCIENTIFIC AREAS, WE IS
GROWING AND STRONG INTEREST IN
DATA SCIENCE AND INFORMATICS.
YOU CAN IMAGINE HOW MUCH DATA
WE'RE SPINNING OUT, WE HAVE TO
HARNESS THAT AND FEED THE A.I.
BEAST.
WE HAVE COMMITMENT TO HAVE THE
NEXT GENERATION OF LEADERS TO
TAKE ADVANCES OF TODAY AND
ADVANCE DISCOVERIES OF TOMORROW.
I'LL TOUCH A BIT ON OUR
NEUROETHICS PROGRAM LOOKING
CLOSELY AT THE RESOURCE AND
IMPLICATIONS ON SOCIETY AND
INDIVIDUALS.
AND THEN VERY IMPORTANTLY AS I
MENTIONED DISSEMINATION AND
COMMERCIALIZATION, TO GET THESE
OUT FOR THE BENEFIT OF ALL.
TODAY I'D LIKE TO LEAVE YOU WITH
THREE KEY TAKEAWAYS.
FIRST, BRAIN ADVANCEMENTS AND
TOOLS AND TECHNOLOGIES MAKE
THEIR WAY INTO THE CLINIC
ALREADY WITH POTENTIAL TO SEE
POSITIVE IMPACTS ON HUMAN HEALTH
ON THE LARGER SCALE.
THE SECOND IS THAT BRAIN TEAMS
ARE DEVELOPING RESOURCES AND
TECHNOLOGIES LAYING THE
FOUNDATION FOR FUTURE CURES.
WE NEED MORE INFORMATION ABOUT
MECHANISMS BEHIND NEURAL CIRCUIT
FUNCTION AND WHAT HAPPENS IN
DISEASE, TO FIND CURES AND
PREVENTION.
BRAIN IS CREATING A PARADIGM FOR
DOING SCIENCE, EXCITING THE PACE
OF DISCOVERY.
WE'VE BEEN SUCCESSFUL IN
ASSEMBLING BIG TEAMS TO ATTACK
PROBLEMS THAT NOT OTHERWISE BE
AS EFFECTIVELY APPROACHED.
LET ME RUN THROUGH THESE AREAS
FOR YOU IN TURN.
SO, WE'RE LOOKING AT DIFFERENT
WAYS OF TREATING BRAIN
DISORDERS.
MOST OF YOU ARE PROBABLY AWARE
OF DEEP BRAIN STIMULATION, WHICH
HAS BEEN AROUND FOR DECADES NOW,
TO TREAT SYMPTOMS OF PARKINSON'S
DISEASE AND OTHER MOVEMENT
DISORDERS.
IT'S BEEN THE GOLD STANDARD,
TREATING SYMPTOMS AT LEAST.
THESE DAYS, LAST TWO YEARS,
INFLECTION POINT IN RESEARCH TO
APPLY THESE STIMULATION
TECHNOLOGIES TO A VARIETY OF
OTHER CONDITIONS.
FOR EXAMPLE, DEPRESSION,
POSTTRAUMATIC STRESS DISORDER,
BRAIN INJURY, TRAUMATIC BRAIN
INJURY, STROKE RECOVERY, PAIN
MANAGEMENT, OCD, EATING CONTROL,
SUBSTANCE USE DISORDERS.
THIS ADVANCES IN THE LAST FEW
YEARS HAS BEEN A COUPLE THINGS.
ONE IS ABILITY TO MAP CIRCUITS
AND AREAS THAT COULD BENEFIT
FROM MODULATION.
THE OTHER IS ABILITY TO BOTH
RECORD AND STIMULATE THE BRAIN
DIFFERENT REGIONS, AND A.I.
TECHNOLOGIES TO BASICALLY
MEASURE BRAIN ACTIVITY IN
PATIENTS AND TURN IT INTO
ACTIONABLE ACTIVITY BIOMARKERS
THAT ENABLE RESEARCHERS NOW TO
TARGET THESE INDIVIDUALS AND
DIFFERENT STATES, TO PUSH THEM
INTO BETTER STATES.
THIS HAS BEEN AMAZING, AGAIN
THESE TECHNOLOGIES HAVE BEEN
AROUND FOR DECADES FOR MOVEMENT
DISORDERS.
ABOUT TEN YEARS AGO, IT WAS
SCIENCE FICTION.
RIGHT NOW WE'VE SEEN TOMORROW
COME TODAY.
IT'S BEEN QUITE REMARKABLE.
IN OTHER DEVELOPMENTS,
PERIPHERAL STIMULATION IS A
GREAT EXAMPLE OF A STUDY LED BY
UNIVERSITY OF PITTSBURGH, USING
EPIDURAL FINAL -- SPINAL
STIMULATION AFTER STROKE.
TWO STROKE PATIENTS WITH CHRONIC
UPPER LIMB PARESIS.
THE PATIENT HAD SUFFERED A
STROKE NINE YEARS PRIOR TO THIS
STUDY, OKAY?
SO THE IDEA HERE IS THAT
FOLLOWING THE STROKE, THE
SIGNALS COMING DOWN,
CORTICOSPINAL SYSTEM ARE
DIMINISHED, WEAK SIGNAL COMING
TO THE SPINAL CORD, IT WOULD
OTHERWISE BE ENGAGING LOCAL
CIRCUITS TO GOVERN MOVEMENT.
THE IDEA HERE IS PUT THESE
EPIDURAL STIMULATORS AROUND THE
SPINAL CORD, RELATIVELY LESS
INVASIVE THAN DEEP BRAIN
STIMULATION DEVICE, ACTUALLY
ALLOW THE PATIENT TO MOVE THEIR
ARM MUCH BETTER.
USING OBJECTIVE MEASURES OF
MUSCLE ACTIVATION, AS WELL AS
OTHER MEASURES OF DEXTERITY,
THEY SAW IMMEDIATE IMPACTS ON
THE ABILITY OF THE PATIENT TO
USE THEIR ARMS TO SELF-FEED WITH
NO TRAINING, EFFECTED LASTED
ABOUT FOUR WEEKS AFTER THE STUDY
CONCLUDED.
A PICTURE IS WORTH A A THOUSAND
WORDS, A VIDEO WORTH MORE.
SUFFERED A STROKE NINE YEARS
PRIOR.
YOU'LL SEE HER TASK HERE TO FEED
HERSELF THE CHICKEN NUGGET.
LOW DEXTERITY, LOW STRENGTH IN
THE ARM.
CAN BARELY STAB THIS THING.
STICK IT I GUESS IN THE HONEY
MUSTARD SAUCE RESEARCHERS
FROM 45 INSTITUTIONS AND SET THE
STAGE FOR COMPREHENSIVE ANALYSIS
OF COMPLETE MAMMALIAN BRAINS.
SO AGAIN DECEMBER 2023 THE GROUP
PUBLISHED CHARACTERIZATION OF
THE ENTIRE MOUSE BRAIN, BASED ON
ANALYSIS OF 32 MILLION CELLS,
THIS IS JUST RIDICULOUS NUMBER
IF YOU THINK ABOUT IT.
USING COMBINATION OF TECHNIQUES,
STATISTICAL ANALYSIS ONE COULD
IDENTIFY STATISTICALLY 5300
DISTINGUISHABLE CELL TYPES,
WHICH REPRESENTS ABOUT 5300
ACTIONABLE HYPOTHESES
RESEARCHERS CAN NOW TEST.
REVIEW OF THE ORGANIZATIONAL
PRINCIPLES UNDERLYING
DIVERSIFICATION.
I COULD GO ON FOR HOURS.
THIS WILL KEEP RESEARCHERS BUSY
FOR YEARS IF NOT DECADES, DIVING
INTO THIS AMAZING DATASET THAT'S
GOING TO SET THE STAGE FOR
RESEARCH NOT ONLY IN MODEL
SYSTEMS LIKE MICE BUT IN
NON-HUMAN PRIMATES AND HUMANS.
AND FINALLY, FROM THIS TRAUNCH
OF PAPERS, DRAFT HUMAN AND
NON-HUMAN PRIMATE BRAIN CELL
ATLAS, 21 PAPERS, UNPRECEDENTED
DEGREE OF RESOLUTION IN SPACE,
SPECIES, TIME, CELL TYPES
COMPRISE THESE BIG BRAINS.
PAVES THE WAY FOR A GREATER
UNDERSTANDING OF THE HUMAN BRAIN
AT THE CELLULAR LEVEL AND
DISEASE.
SUMMARIZING QUICKLY HERE, ABLE
TO LOOK AT ALL THIS DIVERSITY OF
CELL TYPES IN THESE BIG BRAINS
ACROSS SPACE.
USING NOT ONLY SINGLE CELL
TECHNIQUES, SPATIAL
TRANSCRIPTOMICS, WHICH AGAIN
WERE DEVELOPED IN THE BRAIN
INITIATIVE CELL CENSUS PROJECT.
IMPORTANTLY ACROSS SPECIES WE
CAN LEARN FROM MOTHER NATURE IF
WE LOOK ACROSS THESE SPECIES.
IN THIS CASE INVESTIGATORS
LOOKED AT BRAIN CELL TIMES THEY
FOUND MOLECULAR PROPERTIES IN
HUMANS AS WELL AS CLOSEST
RELATIVES, NON-HUMAN PRIMATE
LINEAGE.
NOT SURPRISING, QUITE
INTRIGUING, MANY OF THE
DIFFERENCES FOUND ARE FOUND IN
GENES THAT ENCODE PROTEINS AT
THE SYNAPSE WITH COMMUNICATION
FROM CELL TO CELL.
THIS IS A GREAT PLACE TO LOOK TO
SEE NOT ONLY WHAT MAKES US THE
SAME AND DIFFERENT AND, AGAIN,
UNIQUELY HUMAN.
VERY IMPORTANTLY, MANY OF THE
MOST DEVASTATING NEUROLOGIC AND
NEUROPSYCHIATRIC DISORDERS ARE
DEVELOPMENTAL DISORDERS.
AND AS I'M SURE YOU CAN
APPRECIATE WHAT'S DEVASTATING
SOCIETY TODAY ARE DISEASES OF
AGING AND NEURODEGENERATION,
CRITICAL WE HAVE AN
UNDERSTANDING OF THE CELLULAR
EVENTS AND MOLECULAR EVENTS
ACROSS THE LIFESPAN AND THE CELL
ATLAS NETWORK HAS STRONG
REPRESENTATION AMONG GROUPS
LOOKING AT HUMAN AND OTHER
MAMMALIAN DEVELOPMENT AS WELL AS
AGING, AND WE'LL LEARN A LOT
MORE ABOUT THE DRIVERS OF THESE
PROCESSES AS WE DIVE INTO THESE
PROJECTS MORE FULLY.
THIS SETS THE STAGE FOR THE
BRAIN INITIATIVE CELL ATLAS
NETWORK, WHICH BRINGS ME TO THE
BRAIN INITIATIVE TRANSFORMATIVE
PROJECTS.
IN 2022, WE DECIDED TO, WITH THE
INSPIRATION FROM BRAIN 2.0
REPORTS, INVESTED HEAVILY IN
LARGE PROJECTS WE FELT OR WE
EXPECTED WOULD ACTUALLY
TRANSFORM THE FIELD OF
NEUROSCIENCE RESEARCH FOR
DECADES IF NOT GENERATIONS TO
COME.
THESE ARE THREE INTERNET
PROJECTS, FIRST IS THE BRAIN
INITIATIVE CELL ATLAS NETWORK,
FOCUSING ON DEVELOPING COMPLETE
CELL ATLASES FOR HUMAN AND
NON-HUMAN PRIMATE IN ADDITION TO
FINISHING UP SOME WORK IN THE
OTHER MODEL SYSTEMS.
SECOND IS BRAIN CONNECT,
CONNECTIVITY ACROSS SCALES
NETWORK PROJECT, WHICH WILL
DEVELOP TOOLS TO PROVIDE FULL
DIAGRAM, CONNECTIONS BETWEEN
THESE MANY MILLIONS IF NOT
BILLIONS OF CELLS, IN THE BRAIN.
FINALLY ARMAMENTARIUM TOOL KIT
TO ALLOW -- GIVE RESEARCHERS
BETTER TOOLS TO PRECISELY
INTERROGATE AND MODULATE
SPECIFIC CELLS AND CIRCUITS IN
THE BRAIN, NOT ONLY TO BUILD
BETTER MODELS FOR NEUROCIRCUIT
FUNCTION BUT TO PAVE THE WAY FOR
FUTURE PRECISION CIRCUIT
THERAPIES INCLUDING, I HOPE,
PRECISION GENE THERAPIES.
SO I JUST ABOUT THE BRAIN
INITIATIVE CELL CENSUS PROJECTS.
AND AGAIN THIS HAS GIVEN RISE TO
THE CELL ATLAS NETWORK WITH THE
GOAL TO MOVE TO DRAW UP
KNOWLEDGE BASES FOR OTHER
RESEARCHERS TO UNDERSTAND HOW
NEURAL CIRCUITS FUNCTION IN
HEALTH AND DISEASE.
WE'VE SEEN BENEFITS ALREADY OF
THE BICCN AND BICAN INTO I.C.s
WE SUPPORT.
ONE EXAMPLE IS THE SCORCH
INITIATIVE BY NIDA, LOOKING AT
SYSTEMS FOR CELLULAR CHANGES
THAT HAPPEN IN MODELS OF
ADDICTION AND SUBSTANCE USE
DISORDERS.
VERY EXCITING IS THE SEATTLE
ALZHEIMER'S DISEASE PROJECT,
USING TOOLS DEVELOPED IN THE
BRAIN INITIATIVE NETWORK TO LOOK
AT CHANGES THAT HAPPEN IN THE
LARGE COHORT OF PATIENTS WHO
PASSED FROM ALZHEIMER'S, AND TO
UNDERSTAND DISEASE PROGRESSION,
HOPEFULLY TO LOOK AT DRIVERS,
NOT JUST THE END STAGE EVENTS
BUT DRIVERS OF THE DISEASE, IN
THE HOMES OF FINDING -- HOPES OF
FINDING MECHANISM AND PREVENTION
AND CURE, LAYING FOUNDATION FOR
FUTURE CURES.
THE BRAIN CONNECT, DR.
BERTAGNOLLI MENTIONED THIS
BEAUTIFUL STUDY EARLIER AS A
FORERUNNER TO THE CONNECTS
PROJECT.
THE IDEA IS TO DEVELOP TOOLS TO
ACCOMPLISH A DIAGRAM OF
MAMMALIAN BRAINS.
WE LAUNCHED THIS LAST FALL WITH
11 GRANTS, SUPPORTING RESEARCH
TEAMS AND COLLABORATORS ACROSS
40 UNIVERSITIES AND RESEARCH
INSTITUTIONS.
THEY WILL TOOLS OVER FIVE YEARS
TO SCALE UP TO ACCOMPLISH THIS
AMAZING PROJECT.
THE PROJECTS WILL DEVELOP
COMPLEMENTARY METHODS, THREE
CORE TECHNOLOGIES, FIRST
ELECTROMICROSCOPY, GIVINGIZE TO
THE IARPA PROJECT.
MOLECULAR TOOLS TO INCREASE
THROUGHPUT, MOLECULAR
INFORMATION ABOUT PROJECTIONS.
FINALLY TO DEVELOP NEXT
GENERATION OPTICAL TOOLS FOR
MAPPING OUT LONG RANGE
CONNECTIONS INCLUDING IN HUMAN
BRAINS, QUITE EXCITED ABOUT
THIS.
DR. BERTAGNOLLI HIGHLIGHTED THIS
AMAZING STUDY FROM THE LAB AT
HARVARD IN COLLABORATION WITH A
GROUP RECONSTRUCTING CONSTRUCTIS
IN A CUBIC MILLIMETER CHUNK OF
HUMAN CORTEX.
A LOT OF GREAT INFORMATION HERE,
TO PARAPHRASE ONE OF MY
CHILDHOOD AND ADULT, YOU CAN SEE
A LOT BY LOOKING, YOGI BERRA.
TO SCALE UP, TO ATTAIN A SIMILAR
MAP OF ENTIRE MOUSE BRAIN,
THAT'S ABOUT A 500-FOLD, THREE
ORDER OF MAGNITUDE INCREASE IN
COMPLEXITY.
THIS ONE LEADER OF HUMAN CORTEX,
A PETABYTE OF DATA, A THOUSAND
TERABYTES, A THOUSAND OF YOUR
LAPTOP COMPUTER'S HARD DRIVES,
ANOTHER THOUSAND FOLD, IF ONE
SCALED UP TO DO A HUMAN BRAIN,
ANOTHER THOUSAND FOLD OR
ZETA-BYTE, ENTIRE INTERNET OF
THE TRAFFIC OF THE WORLD IN ONE
WORLD.
THIS IS GOING TO REQUIRE
ADVANCES NOT ONLY IN
EXPERIMENTAL TECHNIQUES BUT IN
DATA SCIENCE AND A.I.
TECHNIQUES.
I THINK THIS FIELD WILL BENEFIT
AND DRIVE NEXT GENERATION A.I.
TECHNIQUES.
STAY TUNED.
WE'RE VERY EXCITED ABOUT THIS
PROJECT.
ARMAMENTARIUM FOR PRECISION
BRAIN CELL ACCESS, WE'RE
DISCOVERING FEED OTHER EFFORTS
THAT I JUST TALKED ABOUT.
AGAIN A CONSORTIUM THAT LAYERS
OVER THREE BASIC AREAS, ONE TO
DEVELOP ACCESS TOOLS.
RIGHT NOW OTHER PROJECTS ARE
FOCUSED ON AAV, THE WORKHORSE
FOR GENE THERAPY, APPLYING NOW
IN ANIMAL MODEL SYSTEMS.
WHAT DO YOU WANT TO PUT IN TO
MONITOR OR MANIPULATE?
THINGS LIKE OPTOGENETIC, CHEMO
GENETIC, GENE EDITORS, TO
DISSEMINATE THESE INTO VECTORS
TO BE USED FOR RESEARCH.
THE GROUP RIGHT NOW WE STARTED
WITH SIX PILOT PROJECTS, LOOKING
AT DEVELOPING BETTER ACCESS
TOOLS, SO FAR FOCUSING ON CAPSID
ENGINEERING USING COOL DIRECTED
EVOLUTION AND A.I. TECHNIQUES.
ALSO COMBINED WITH CELL CENSUS
INFORMATION TO EXTRACT SEQUENCES
TO PILOT CELL TYPES, THEY ARE
ALREADY SPITTING OUT A BUNCH OF
PAPERS, I UNDERSTAND THERE'S A
PACKAGE BEING PUT TOGETHER AS WE
SPEAK.
STAY TUNED FOR THAT.
OF COURSE WE NEED TO GET THESE
INTO PEOPLE'S HANDS.
ALSO WE NEED TO ENGAGE MORE OF
THE TALENT WE HAVE ACROSS THE
COUNTRY.
SO EXPERIMENT WE'RE RUNNING, SO
FAR PRELIMINARY RESULTS ARE
PRETTY GOOD, WE'VE COUPLED,
WE'VE COUPLED TOGETHER U01
TECHNOLOGY DEVELOPERS TOGETHER
WITH U24 TECHNOLOGY DEVELOPERS
AND DISTRIBUTORS THAT PAIR UP
THESE LABS WITH LABS FROM
INSTITUTIONS IN IDeA STATE
ELIGIBLE STATES.
SO THIS IS JUST GOING ON, WE
HAVE THE THIRD ONE WE'RE LOOKING
AT RIGHT NOW, HOPING TO BUILD A
LARGER NETWORK THAT BOTH ENGAGES
MORE RESEARCH CAPACITY IN THIS
COUNTRY, ALSO ALLOWS US TO GET
REAGENTS INTO PEOPLE'S HANDS.
STAY TUNED.
TOGETHER WE BELIEVE HE'S HAVE AN
IMPACT ON HOW WE'RE DOING
NEUROSCIENCE RESEARCH AND THINK
TOGETHER THEY WILL CHANGE THE
WAY WE GO ABOUT THIS.
IT'S NOT ONLY IN THE LAB BUT
ALSO IN THE CLINIC.
FOURTH BIG PROJECT WE STOOD UP,
BRAIN BEHAVIOR QUANTIFICATION
PROGRAM TO DEVELOP AND VALIDATE
NEXT GENERATION TOOLS, INCLUDING
A.I. APPROACHES, TO PRECISELY
QUANTIFY COMPLEX BEHAVIORS AND
COMBINE INFORMATION WITH
SIMULTANEOUS HIGH PRECISION
RECORDINGS OF INACTIVITY WHICH
WE GOOD AT NOW, IN ORDER TO GET
A BETTER IDEA OF THE CAUSALITY
BETWEEN WHAT HAPPENS BETWEEN
HERE AND WHAT HAPPENS IN TERMS
OF BEHAVIOR.
THIS IS A VERY EXCITING PROJECT.
WE HAVE A NUMBER OF DIFFERENT
WAYS APPROACHING THIS USING
ANIMAL MODELS, HUMAN MODELS,
DATA COORDINATION, AND THEORY
COMPUTATIONAL MODELS AND A.I.
APPROACHES.
WE JUST LAUNCHED AWARDS ON THIS.
ONE OF THE UNIQUE FACETS OF THE
BRAIN INITIATIVE IS THIS WINDOW
OF OPPORTUNITY IN STUDYING THE
HUMAN BRAIN, HOW IT STORES AND
RETRIEVES MEMORY, GENERATES AND
SO ON AND SO FORTH.
WHAT "BRAIN" IS DOING IN THIS
RESEARCH OPPORTUNITY IN HUMANS
PROGRAM IS WE ARE LEVERAGING THE
SITUATIONS WHERE PATIENTS ARE IN
THE HOSPITAL FOR SOME TREATMENT,
COULD BE AN EPILEPSY MONITORING
UNIT, INVASIVE RECORDING, OR
COULD BE INTRAOPERATIVE
RECORDINGS WHERE THE SURGEON
NEEDS TO KNOW WHAT PARTS OF THE
BRAIN, HEALTHY PARTS OF THE
BRAIN TO AVOID WHEN EXTRACTING A
PATHOLOGICAL PIECE.
WE'RE FORTUNATE SOME PATIENTS
ARE WILLING TO BE PARTNERS WITH
US IN RESEARCH TO DEDICATE THEIR
TIME, THEMSELVES, TOWARD HELPING
THIS UNDERSTANDING HOW THE HUMAN
BRAIN FUNCTIONS.
AND THIS IS REALLY QUITE
EXCITING, BUT ALSO RAISES
ETHICAL ISSUES WE NEED TO BE
COGNIZANT OF TO WORK RESPONSIBLY
WITH AN EYE TOWARD THE FUTURE OF
IMPLICATION, ETHICAL, LEGAL,
SOCIETAL IMPLICATIONS OF WHAT WE
DO.
WE HAVE A NEUROETHICS WORKING
GROUP THAT GIVES INPUT ON WHAT
WE'RE DOING, HELPS FLAG ISSUES
BEFORE THEY BECOME ISSUES.
WE HAVE A SET OF NEUROETHICS
GUIDING PRINCIPLES THAT GO JUST
BEYOND THE USUAL SAFETY AND
PRIVACY DOMAINS, ALSO AS WE
START TINKERING IN PEOPLE'S
BRAINS WE HAVE TO BE VERY
CONSCIOUS OF ISSUES ABOUT
AGENCY, AND SO FORTH, AND
IMPORTANCE OF ENGAGING THE
PUBLIC IN UNDERSTANDING AND
ENCOURAGING OR NOT ENCOURAGING
US TO PURSUE DIFFERENT RESEARCH,
WE HELD A NUMBER OF WORKSHOPS,
HAVE A DEDICATED TEAM OF PROGRAM
DIRECTORS FOCUSING ON
NEUROETHICAL ISSUES.
WE ALSO FUND SCHOLARLY RESEARCH
IN THE NEUROETHICS DOMAIN.
BRAIN IS PAVING THE WAY THERE.
HOW ARE WE GOING TO DEAL WITH
THIS HUGE TROVE OF DATA THAT'S
COMING OUR WAY?
A DECISION WAS MADE, A VERY GOOD
DECISION, TO STAND UP A SET OF
DATA ARCHIVES TO NOT JUST HOLD
BUT TO MAKE BRAIN DATA FAIR,
ACCESSIBLE INTRAOPERABLE AND
REUSABLE, A WORK IN PROGRESS
MAKING SURE THIS IS FOR THE
BENEFIT OF ALL.
BRAIN IS COMMITTED TO BUILDING A
STRONGER WORKFORCE.
THERE'S A GROWING BODY OF
EMPIRICAL STUDIES SHOWING THAT
TEAMS WITH DIVERSE PERSPECTIVES
TEND TO OUTPERFORM TEAMS
WITHOUT, IN TERMS OF CREATIVITY
AND EFFECTIVENESS, BRAIN TOOK A
BOLD STEP LOOKING AT THIS
CAREFULLY AND IMPLEMENTING WHAT
WE CALL A PLAN FOR ENHANCING
DIVERSE PERSPECTIVES, IN WHICH
WE ASK ACTUALLY WE REQUIRE
INVESTIGATORS TO TELL US HOW
THEY ARE GOING TO USE DIVERSE
PERSPECTIVES TO ADVANCE THEIR
SCIENCE.
SO, DIVERSE PERSPECTIVES CAN
INCLUDE PEOPLE WHO DO THE
RESEARCH, PEOPLE WHO ARE
PARTICIPATING IN THE RESEARCH AS
HUMAN SUBJECTS, AND THE PLACES
WHERE RESEARCH IS DONE.
THERE'S A NUMBER OF ACTUAL
STRATEGIES FOLKS CAN TAKE TO
IMPLEMENT, COULD INVOLVE
PERSONAL RECRUITMENT, MENTORING
AND TRAINING, AGAIN RESEARCH
PARTICIPANT RECRUITMENT,
ADVISORY BOARDS, OUTREACH
PARTNERSHIP AND DISSEMINATION.
WE'RE VERY EXCITED ABOUT THIS.
JUST STARTED THIS PROGRAM A FEW
YEARS AGO.
I THINK IT'S BEEN TAKEN UP BY
OVER 200 NOFOs ACROSS NIH,
EARLY DATA ON THE BRAIN
INITIATIVE NOFOs HAD SHOWN
MOVEMENT OF THE NEEDLE BRINGING
MORE DIVERSE TEAMS TO CARRY OUT
THIS FUNDAMENTAL RESEARCH.
OKAY.
THE THREE MAIN TAKEAWAYS, WE'RE
MAKING BIG ADVANCES ALREADY IN
THE CLINIC.
LAYING DOWN FOUNDATION FOR
FUTURE CURES, CREATING A
PARADIGM FOR DOING SCIENCE
THAT'S ACCELERATING PACE OF
DISCOVERY, ACTUALLY FOURTH
TAKEAWAY WE'RE EXCITED TO
CONTINUE TO BUILD MOMENTUM TO
BRING CURES FOR DEVASTATING
HUMAN BRAIN DISORDERS IN OUR
LIFETIME.
HOPEFULLY I HAVE TIME TO TAKE
QUESTIONS.
NEXT WEEK WE HAVE THE TENTH
ANNUAL BRAIN INITIATIVE
CONFERENCE, WE'RE VERY EXCITED
ABOUT THAT.
IT'S IN HYBRID FORMAT, WE HAVE A
REALLY PLENARY TALK, FIRST FROM
STANFORD, DECONSTRUCTING
SEROTONIN SYSTEM IN THE MOUSE
BRAIN AND A TALK ON UNPUBLISHED
DATA SHOULD BE EXCITING TO SEE.
WE'LL HAVE A PANEL DISCUSSION
MONDAY AFTERNOON BUILDING ON A
DECADE OF INNOVATION, HERE WE'LL
HAVE OUR FORMER DIRECTOR DR.
FRANCIS COLLINS TOGETHER WITH
CORDY BARDMAN AND BILL NEWSOM,
WHO WROTE THE RECORD, DR.
MONTOJO AND DR. EDDIE CHANG,
WE'RE LOOKING FORWARD TO GREAT
CONVERSATION.
ON TUESDAY MORNING WE'LL HAVE
ANOTHER PLENARY LECTURE FROM A
PIER
PIE -- A PIONEER TALKING ABOUT
THE BLOOD-BRAIN BARRIER, HOW
IT'S OUR FRIEND AND FOE.
LEARN MORE BY POPPING INTO YOUR
BROWSER BRAIN .GOV.
THANKS FOR YOUR ATTENTION AND
I'M HAPPY TO TAKE QUESTIONS IF
THERE'S TIME.
>> THANK YOU SO MUCH, JOHN.
WE HAVE A QUESTION FROM GARTH.
>> CLEARLY, YOU HAVE THOUGHT
ABOUT THE ISSUE OF EQUITY AND
DIVERSITY FROM THE COMPONENTS IN
TERMS OF DIVERSIFYING RESEARCH
INFRASTRUCTURE.
HOW WILL YOU DESCRIBE THAT MACRO
VISION AROUND EQUITY THAT YOU'RE
IMPLEMENTING, AND DO YOU SEE --
>> I'M HAVING A HARD TIME
HEARING YOU.
>> SORRY, HOW WOULD YOU DESCRIBE
MACROVISION AROUND EQUITY, AS
YOU'RE MOVING FORWARD, I'LL KEEP
THE QUESTION SIMPLE.
>> EQUITY NEEDS TO BE LOOKED AT
THROUGH DIFFERENT LENSES
CONVERGING ON THE SAME END GOAL.
IT'S GOING TO BE IMPORTANT THAT
WHATEVER TOOLS, WHATEVER
DISCOVERIES WE MAKE WILL BENEFIT
NOT JUST THE PRIVILEGED FEW BUT
ALL.
I'LL SAY MY PERSONAL
PERSPECTIVE, YOU NEED TO
MINIMIZE VARIABILITY, I LATER
LEARNED MAYBE THAT'S NOT WAIT TO
LOOK AT IT.
WE'RE A DIVERSE POPULATION OF
HUMANS.
DIFFERENCES CAN TELL US A LOT,
BY, FOR EXAMPLE, IN THE CELL
CENSUS PROJECT WE INTENTIONALLY
DEMANDED THAT PART OF THE
RESEARCH BE FOCUSED ON DIVERSITY
OF HUMANS ON THE PLANET.
AND WHAT THIS WILL TELL US, A
COUPLE THINGS.
IT WILL TELL US I THINK SOME
SPECIFIC FEATURES THAT MIGHT BE
PARTICULAR TO CERTAIN
POPULATIONS, THAT COULD INFORM
US NOT ONLY ABOUT
VULNERABILITIES BUT RESILIENCE
OR ROBUSTNESS TO DISEASE.
AND ALSO BE ABLE TO TELL US
ABOUT THE BIOLOGICAL PROCESSES
THAT ARE ROBUST TO VARIATION,
COULD BE THE BASIS FOR CURES FOR
ALL HUMANS, NOT JUST A FEW.
THAT'S ONE APPROACH.
THE OTHER APPROACH, THE SCIENCE
WE DO IS A FUNCTION OF WHO IS
DOING THE SCIENCE.
THIS IS WHY WE FEEL IT'S SO
CRITICAL TO BRING IN DIVERSE
PERSPECTIVES, PEOPLE FROM
DIFFERENT SCIENTIFIC
BACKGROUNDS, WITH DIFFERENT LIFE
EXPERIENCES, DIFFERENT VIEWS OF
THE WORK THEY DO, FROM DIFFERENT
PARTS OF THE COUNTRY.
WE HAVE A VAST AMOUNT OF TALENT
ACROSS THE COUNTRY, AT LEAST IN
THE BRAIN INITIATIVE I DON'T
FEEL WE'RE TOPPING IN AS WELL AS
WE COULD.
THIS IS AN APPROACH TO MAKE SURE
THAT, AGAIN, RICHES WE OBTAIN
ARE FOR THE BENEFIT OF ALL, WE
NEED TO LOOK AT SCIENCE,
CRITICALLY ALSO LOOK AT WHO IS
DOING THE SCIENCE.
>> WE HEARD EARLIER, TALKING
ABOUT THE BUDGET -- FIRST OF
ALL, GREAT PRESENTATION,
INCREDIBLE SCIENCE, MAKING A
DIFFERENCE.
WE HEARD EARLIER IN THE BUDGET
PART ABOUT A $278 MILLION CUT TO
NEXT YEAR.
HOW DOES THAT AFFECT ALL OF THAT
SCIENCE?
>> RIGHT.
I'M STILL STANDING.
WE'RE STILL STANDING.
WE EXPERIENCED QUITE A CUT
COMPARED TO FY 23 BUDGET.
WE'RE STILL FUNDING GREAT
RESEARCH, OVER $4 MILLION OF
AMAZING RESEARCH, I CAN ASSURE
YOU NO MATTER WHERE THE NUMBER
IS WE'LL MAKE SURE EVERY DOLLAR
SIN VESTED VESTED -- IS INVEST.
WHAT THE FUTURE HOLDS, WE HAVE
TO TRIM BACK.
WE COULD NOT FUND NEARLY AS MANY
GREAT PROJECTS AS WE WANTED TO.
THAT HURT.
THAT HURT US ALL PERSONALLY,
HURT A LOT OF PEOPLE IN THE
FIELD.
THIS IS THE REALITY.
I JUST TELL PEOPLE THE BEST
THING WE CAN DO RIGHT NOW IS DO
THE BEST WORK WE CAN TO SHOW
PEOPLE THE BENEFIT.
IN TERMS OF WHAT THE FUTURE
HOLDS I'LL KICK OVER TO DR.
BERTAGNOLLI TO COMMENT.
I TOLD LARRY I WOULD KICK TO HIM
AND HE SAID HE WOULD KICK TO
YOU.
>> SOUNDS GOOD.
ANYONE ELSE?
QUESTIONS?
YES?
>> COULD YOU TALK ABOUT THE TYPE
OF SCIENCE YOU MIGHT NOT BE ABLE
TO FUND.
I'M IN THE BRAIN INITIATIVE
PORTFOLIO, A NOTICE ABOUT
RETRAINING GRANTS, SO WHAT
THINGS HAVE GONE AWAY THAT ARE
REALLY IMPORTANT TO THE WORK
BEING DONE?
>> I'M GOING TO COME BACK TO IT.
WE DECIDED WE MUST FUND PROJECTS
THAT ARE REALLY IN THE CORE,
SPEAK TO THE CORE MISSION VALUES
OF "BRAIN."
IT HAS TO BE INNOVATIVE,
SOMETHING NOT BEING DONE
ELSEWHERE, PROJECTS THAT THE
I.C.s ARE NOT OR LESS LIKELY
TO BE PICKING UP.
IT NEEDS TO BE INCLUSIVE.
IT NEEDS TO BE OPEN, WE NEED TO
MAKE SURE WE CAN REACH -- HAVE
AS GREAT A REACH AS WE CAN, IT
NEEDS TO BE ETHICAL.
SO ONE OF THE THINGS -- SO WE'RE
STILL FUNDING ACROSS THE ENTIRE
PORTFOLIO.
WE HAVE MADE A PRIORITY OF
TRANSFORMATIVE PROJECTS, BBQS,
TRAINING AND EARLY-STAGE
INVESTIGATORS, NOT ABLE TO DO AS
MUCH AS WE WANTED TO.
ACTUALLY THERE'S NO ONE PART OF
THE PORTFOLIO GETTING LEFT OUT.
THERE'S NOT AS MUCH OF IT TO GO
AROUND.
WE'RE EXCITED ABOUT WHAT WE'RE
FUNDING BUT NOT AS MUCH AS WE
COULD.
WE'RE HOPING IF MONEY IS
RESTORED, WE'RE KEEPING STUFF ON
DECK AND HOPEFULLY IF WE SEE
BETTER DAYS WE CAN GET THOSE
PROJECTS OUT THE DOOR BUT RIGHT
NOW WE HUNKER DOWN AND DO THE
BEST WE CAN STILL FUNDING
AMAZING SCIENCE.
>> OTHER QUESTIONS?
OKAY.
JOHN, THANK YOU SO MUCH.
>> THANKS SO MUCH.
>> GREAT.
NOW WE'RE GOING TO MOVE TO DR.
TARA SCHWETZ AND DR. JANINE
CLAYTON, OVERVIEW OF WOMEN'S
HEALTH RESEARCH AND POLICIES
ACROSS ALL OF NIH.
>> GREAT.
THANK YOU, EVERYONE.
GOOD AFTERNOON.
THIS IS THE FIRST OF THREE FOR
ME.
YOU'RE GOING TO HEAR A LITTLE
BIT FROM ME THIS AFTERNOON.
BUT WE WANTED TO TAKE A FEW
MINUTES TO TALK A LITTLE BIT
ABOUT SOME OF THE WORK THAT
WE'RE DOING IN THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH, AND
MORE BROADLY ACROSS THE NIH.
ON THE TOPIC OF WOMEN'S HEALTH
RESEARCH.
I'M GOING TO START BY GIVING
HISTORY AND BACKGROUND AND TURN
IT OVER TO JANINE TO TALK MORE
ABOUT THE SPECIFIC INITIATIVES
AND ACTIVITIES, YOU ALREADY
HEARD ABOUT ONE FROM THIS
MORNING FROM DR. BERTAGNOLLI
ABOUT THE WHITE HOUSE WOMEN'S
HEALTH RESEARCH INITIATIVE.
OKAY.
SO, FIRST I'LL JUST EMPHASIZE
ACROSS THE WORLD WE SEE WOMEN
HAVE LONGER LIFE EXPECTANCIES
THAN MEN, IN PARTICULAR IN THE
UNITED STATES, FOR OVER A
CENTURY THIS HAS HELD TRUE FOR
WOMEN COMPARED TO MEN, WITH
LONGER LIFE EXPECTANCIES.
AND I THINK THAT IS A GREAT --
YEAH, ALREADY A QUESTION.
OH, OKAY.
LET'S SEE.
I DON'T KNOW IF JORDAN OR -- ARE
WE SHARING THE SLIDES ON ZOOM?
>> NO SLIDES ON ZOOM RIGHT NOW.
>> HOLD ON.
BEAR WITH US ONE SECOND.
WHILE WE GET THAT GOING.
THIS IS THE GRAPH I WAS
REFERENCING A MOMENT AGO.
AS WE THINK ABOUT LONGER LIFE
EXPECTANCY FOR WOMEN, A GREAT
THING, BUT ON THE FLIP SIDE
WOMEN ARE MORE LIKELY TO HAVE
CHRONIC DISEASES.
IN FACT, MORE LIKELY TO HAVE
MULTIPLE MORBIDITY ASSOCIATED
WITH THAT.
AND THAT COULD OBVIOUSLY HAVE
GREAT IMPACT ON ALL THE QUALITY
OF LIFE AND VARIOUS HEALTH CARE
NEEDS THAT PEOPLE EXPERIENCE AND
FACE.
SO, YOU KNOW, WE ALSO SEE AND
KNOW THERE ARE BIOLOGICAL
DIFFERENCES, IN ADDITION TO
THOSE SOCIAL DETERMINANTS OF
HEALTH THAT HELP INFLUENCE AND
DETERMINE SORT OF THE ONSET AND
PROGRESSION AND TREATMENT OF
THESE VARIOUS DIFFERENT
DISEASES.
SO IT'S REALLY IMPORTANT TO
UNDERSTAND AND ENSURE THAT WOMEN
ARE INCLUDED IN RESEARCH AND
HELP US UNDERSTAND EVEN FURTHER
THE SEX AND GENDER DIFFERENCES
AS THEY ARE INCORPORATED INTO
RESEARCH.
WE THINK ABOUT THEM IN RESEARCH.
AND SO THE NIH HAS REALLY HAD A
FAIRLY LONG HISTORY OF
SUPPORTING WOMEN'S HEALTH
RESEARCH, AND IN PARTICULAR I
MEAN IT GOES BACK EVEN FURTHER
THAN THIS BUT WHEN WE THINK
ABOUT SOME OF THE POLICIES IN
PARTICULAR THAT WERE PUT IN
PLACE, YOU KNOW, THIS GOES BACK
TO THE '80s, OF COURSE WE'VE
BEEN DOING RESEARCH ON WOMEN'S
HEALTH SINCE BEFORE 1986, BUT I
WANT TO AT LEAST CALL OUT SOME
POLICIES ENACTED AND CERTAIN
ACTIVITIES THAT HAVE OCCURRED AS
A RESULT.
SO, BACK IN THE MID-'80s,
THERE WAS A POLICY THAT NIH
CREATED TO -- INCLUSION OF WOMEN
AND MINORITIES IN CLINICAL
RESEARCH, ENCOURAGED RESEARCHERS
TO DO THAT, INCLUDE WOMEN AND
MINORITY IN STUDIES, SO
IMPORTANT TO UNDERSTANDING
BIOLOGY AND HOW EVERYTHING
WORKS.
INCLUDING WHEN WE THINK ABOUT
CLINICAL TRIALS.
AND THEN IN 1990, THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH WAS
ESTABLISHED.
WE HAD OUR FIRST DIRECTOR
APPOINTED FULL TIME, DR. VIVIAN
PINN, SHE WAS APPOINTED IN 1991.
AND A FEW YEARS LATER, THE
CONGRESS PASSED THE NIH
VITALIZATION ACT REQUIRING
INCLUSION OF WOMEN AND
MINORITIES IN NIH-FUNDED
RESEARCH.
AS I SAID, NIH HAD ALREADY BEEN
DOING IT FOR A DECADE AT THAT
POINT BUT THIS WAS A LAW THAT
CONGRESS PUT INTO LEGISLATION.
FAST FORWARD, NIH BUILT POLICY
AROUND SEX AS A BIOLOGICAL
VARIABLE, THAT THIS WAS A REALLY
LANDMARK POLICY AROUND RIGOR AND
REPRODUCIBILITY THAT REQUIRED
THERE WAS CONSIDERATION OF SEX
AS A BIOLOGICAL VARIABLE IN BOTH
ANIMAL AND HUMAN STUDIES, AND
JUSTIFICATION OF SINGLE SEX
STUDIES, SO STUDIES THAT ONLY
INCLUDED ONE SEX, THEY HAD TO
EXPLAIN WHY THAT WAS THE CASE.
AND THERE HAD TO BE A SCIENTIFIC
BASIS FOR IT.
AND THEN THAT SAME YEAR, 21ST
CENTURY CURES ACT WAS PASSED
INCLUDING LEGISLATION,
LEGISLATIVE LANGUAGE ON
REPORTING REQUIREMENTS AND
INCLUSION ACROSS THE LIFESPAN
POLICY INCLUDING CHILDREN AND
OLDER ADULTS TO BOLSTER THE WORK
WE'RE DOING IN THE CLINICAL
SPACE.
OKAY.
SO I THINK WHAT WE HAVE SEEN AS
A RESULT OF THESE CHANGES OVER
THE YEARS WE'VE SEEN A
SIGNIFICANT INCREASE IN
PROPORTION OF NIH-FUNDED
CLINICAL TRIALS REPORTING
OUTCOMES BY SEX.
AND IF YOU LOOK AT THESE DATA
HERE FROM 2023, YOU CAN SEE
ENROLLMENT LEVELS, AND FOR
OVERALL CLINICAL STUDIES WE HAVE
ABOUT 56.5% OF OUR CLINICAL
TRIALS PARTICIPANTS IDENTIFYING
AS FEMALES, AND OVER 2/3 OF
THOSE IN THE NIH-DEFINED PHASE 3
CLINICAL TRIALS ARE FEMALE.
SO THESE NUMBERS REFLECT I THINK
SOME VERY SIGNIFICANT SUCCESS
THAT WE'VE HAD WITH THOSE
POLICIES.
AND WE LOOK AT OUR OVERALL
INVESTMENT IN WOMEN'S HEALTH
ACROSS NIH, THESE ARE FY 23
NUMBERS, FINALIZED.
WE HAVE ABOUT $5 BILLION THAT
WE'RE COMMITTING TO SUPPORTING
WOMEN'S HEALTH RESEARCH, DEFINED
IN A PARTICULAR WAY, OF COURSE
AGAIN THERE'S A LOT MORE STUFF
THAT I THINK WE WOULD SAY THAT
AS A WHOLE WE'RE DOING TO
SUPPORT RESEARCH AND THAT
INCLUDES WOMEN IN TRIALS,
FOCUSED ON WOMEN'S HEALTH AND
WOMEN'S HEALTH ISSUES.
YOU CAN SEE THE VARIABILITY IN
THE COMMITMENT ACROSS THE
I.C.s.
THERE'S IS STRONG COMMITMENT
ACROSS ALL OF OUR INSTITUTES AND
CENTERS FOR SUPPORTING WOMEN'S
HEALTH RESEARCH, AND THAT'S
REFLECTED HERE.
ALL RIGHT.
AND WHEN WE TALK ABOUT WOMEN'S
HEALTH RESEARCH, WE OFTEN THINK
ABOUT IT IN THREE BUCKETS.
SO WE THINK ABOUT THINGS THAT
ARE FEMALE SPECIFIC, THERE'S
EXAMPLES ON THE RIGHT SIDE OF
THE SCREEN, INCLUDING
ENDOMETRIOSIS, CERVICAL CANCER,
MENOPAUSE.
THE SECOND BUCKET IS THOSE
THINGS THAT PREDOMINANTLY AFFECT
WOMEN, AUTOIMMUNE DISEASES FOR
INSTANCE
AND THEN THE THIRD THING IS --
THIRD AREA IS CONDITIONS THAT
ARE UNDERSTUDIED IN WOMEN, COPD,
DEMENTIA, HIV.
AT NIH WE FUND A WIDE ARRAY OF
TOPICS THAT ARE KIND OF IN THESE
THREE BUCKETS, AGAIN THEY ARE
CALLED OUT HERE.
I'M NOT GOING INTO ANY DETAIL
BUT I WANTED TO EMPHASIZE THESE
ARE SOME TOPICS IN THE THREE
BUCKETS WE DO FUND AND SUPPORT
ACROSS ALL THE INSTITUTES AND
CENTERS, AND AGAIN THIS IS AN
NIH-WIDE APPROACH THAT WE'RE
TAKING TO SUPPORTING WOMEN'S
HEALTH RESEARCH.
AND TO REFLECT THAT, ADVISORY
COMMITTEE ON RESEARCH ON WOMEN'S
HEALTH PUTS OUT A BIENNIAL
REPORT AS WE REFER TO IT, AND
THEY HAVE IDENTIFIED A FEW AREAS
THAT ARE CROSS-CUTTING TOPICS,
THIS WAS A NEW FEATURE OF THIS
REPORT OVER THE LAST COUPLE
YEARS, AND THEY IDENTIFIED A
HANDFUL OF THOSE ISSUES, YOU CAN
SEE THAT ALIGNS NICELY WITH
FUNDING PRIORITIES FROM THE LAST
SLIDE.
LIKE AGING AUTOIMMUNE ZEUS,
--
DISEASE, MORBIDITY AND
MORTALITY, SOCIAL DETERMINANTS
OF HEALTH.
AND ALSO NOTED IN THAT REPORT
THEY CALLED OUT THE WOMEN'S
HEALTH RESEARCH CONDUCTED ACROSS
ALL OF THE DIFFERENT INSTITUTES
AND CENTERS, PRIORITIES AND
SUCCESSES OF OUTCOMES THAT HAVE
COME OUT OF THE RESEARCH THAT
INSTITUTES AND CENTERS HAVE
FUNDED.
AS WELL AS OFFICES, AND TABLES I
SHED EARLIER, INCLUSION OF WOMEN
AND MINORITIES IN CLINICAL
RESEARCH AS WELL AS CONTRIBUTION
OF WOMEN TO THE WORKFORCE
DYNAMICS.
WE KNOW OF COURSE THAT, YOU
KNOW, THE RATE AT LEAST IN TERMS
OF WORKFORCE LOOK GOOD EARLY ON,
AS WOMEN ADVANCE IN THEIR
CAREERS, THEY SORT OF DROP OUT
OF THE LEADERSHIP LEVEL AND SO
THAT'S OBVIOUSLY AN AREA OF
FOCUS.
ALL RIGHT.
WHEN WE THINK ABOUT
CROSS-CUTTING THEMES, WHERE
RESEARCH IS URGENTLY NEEDED, WE
HAVE ANOTHER REPORT THAT SAME
ADVISORY COMMITTEE PUT OUT THAT
OUTLINED THREE AREAS OF
PARTICULAR FOCUS.
AND NEED.
IN PARTICULAR, IMPLEMENTING BEST
PRACTICES, THINGS
EVIDENCE-BASED, THAT WE CAN PUT
DATA AROUND TO HELP PROVIDE THAT
PATIENT-CENTERED CARE.
HELPING TO ADDRESS CARE
INEQUITIES, WE KNOW THERE ARE
DISPARITIES AND PARTICULARLY IN
POPULATIONS HISTORICALLY
UNDERSTUDIED AND
UNDERREPRESENTED AND
UNDERREPORTED IN RESEARCH.
AND THE THIRD AREA IS BEING
INTENTIONAL ABOUT THE RESEARCH
THAT IS SUPPORTED.
AS WE THINK ABOUT INCLUDING
WOMEN IN STUDY DESIGN AND
HYPOTHESES, ANALYSES, JUST BEING
REALLY INTENTIONAL ABOUT THAT
AND HELPING TO FULLY UNDERSTAND
THE GAPS AND DIFFERENCES THAT
EXIST IN TERMS OF SEX AS A
BIOLOGICAL VARIABLE.
AND FINALLY, MY FINAL SLIDE, TO
CALL OUT THAT WE HAVE OVER THE
LAST SEVERAL YEARS INCORPORATED
WOMEN'S HEALTH AS A
CROSS-CUTTING THEME IN THE
NIH-WIDE STRATEGIC PLAN, SO THIS
IS THE SECOND ITERATION OF THE
NIH-WIDE STRATEGIC PLAN THAT'S
RUN FROM FY 21 TO FY 25 AND
EMPHASIZES INTERDISCIPLINARY
PARTNERSHIPS NEEDED IN THIS
SPACE, REPORTING REQUIREMENTS,
AGAIN WE ALREADY MENTIONED
BEFORE ADVANCEMENTS OF WOMEN
SCIENTISTS.
WE ALSO PUT OUT A STRATEGIC PLAN
FOR RESEARCH ON WOMEN'S HEALTH
ACROSS THE AGENCY, VERY
SPECIFICALLY, AND AGAIN YOU'LL
SEE SOME OVERLAPS THERE BECAUSE
SOME CROSS-CUTTING THEMES
INCLUDED IN THAT INCLUDE
INTERDISCIPLINARY COLLABORATION
AS WELL, BUT ALSO THINGS LIKE
HOW WE CAN THINK ABOUT AND
SHOULD BE THINKING ABOUT
COMORBIDITY AND MULTI-MORBIDITY,
PRECISION MEDICINE, INCLUSION IN
STUDIES, AS WELL AS SEX AND
GENDER DIFFERENCE RESEARCH AND
PREVENTIVE CARE AND SERVICES
THAT ARE SO CRITICAL.
WITH THAT, I'M NOW GOING TO TURN
IT OVER TO JANINE TO TALK MORE
ABOUT SOME OF THE WORK THAT IS
BEING DONE, FACILITATED BY HER
OFFICE, ALSO BROADER NIH-WIDE
EFFORTS.
JANINE?
>> THANK YOU, TARA.
I'M GOING TO EXTEND DR.
SCHWETZ'S COMMENTS AND GIVE YOU
MORE DETAIL ON WOMEN'S HEALTH
RESEARCH ACROSS THE 27
INSTITUTES AND CENTERS AT NIH.
AND GIVE A LITTLE BIT MORE
DETAIL ON THE WHITE HOUSE
INITIATIVE.
I ALWAYS LIKE TO START WITH
DATA.
YOU HEARD FROM DR. SCHWETZ ABOUT
WELL-KNOWN LIFE EXPECTANCY
DIFFERENCES BETWEEN MEN AND
WOMEN.
WE'VE KNOWN FOR MANY YEARS WOMEN
LIVE LONGER THAN MEN.
BUT JUST BECAUSE WOMEN LIVE
LONGER THAN MEN DOESN'T MEAN
THEY HAVE A LONGER HEALTH SPAN.
WE REALLY NEED TO UNDERSTAND
WHAT'S BENEATH THE HEALTH SPAN.
THIS DATA FROM THE GLOBAL BURDEN
OF DISEASE, ON THE LEFT FEMALES,
MALES ON THE RIGHT.
DIFFERENT COLORS.
YOU DON'T NEED TO BE ABLE TO
READ THAT.
AGE ON THE Y-AXIS.
THIS IS DIFFERENCE IN YEARS
LIVED WITH DISABILITY BETWEEN
FEMALES AND MALES ACROSS THE
WORLD.
YOU CAN SEE DIFFERENT COLORS ON
EACH OF THE SIDES REPRESENTING
DIFFERENT DISEASES THAT ARE
CAUSING DISABILITY AND YOU CAN
SEE GREATER DISABILITY, GREATER
YEARS LIVED WITH DISABILITY FOR
FEMALES AT ALL AGES, IN
PARTICULAR 20 TO 49.
THIS GIVES US A SENSE OF WHAT WE
CAN LEARN BY DRILLING DOWN AND
TRYING TO UNDERSTAND WHAT'S
BENEATH DIFFERENCES ACROSS OUR
EFFORTS HERE AT NIH.
THE OFFICE OF RESEARCH ON
WOMEN'S HEALTH, ORWH, THE
MISSION TO EXPAND WOMEN'S
HEALTH, MAKE SURE GROUPS ARE
INCLUDED AND ADVANCE WOMEN IN
SCIENCE CAREERS.
NIH IN OUR LAST STRATEGIC PLAN
FOR WOMEN'S HEALTH PUT OUT AN
EXPECTATION.
WE ENVISION A TIME WHERE SEX AND
GENDER INTEGRATED ACROSS THE
BIOMEDICAL CONTINUUM, BASIC AND
RESEARCH, A WORLD WHERE EVERY
WOMAN RECEIVES EVIDENCE-BASED
DIAGNOSTICS TREATMENT AND CARE
TAILORED TO HER CIRCUMSTANCES,
GOALS, NEEDS, AND A WORLD WHERE
ALL WOMEN IN SCIENCE CAREERS
REACH FULL POTENTIAL INCLUDING
LEADERSHIP LEVEL.
EVERYTHING WE DO AT NIH HERE IN
THE OFFICE OF RESEARCH ON
WOMEN'S HEALTH IS IN
COLLABORATION WITH INSTITUTES
AND CENTERS, AND THIS NIH-WIDE
STRATEGIC PLAN FOR RESEARCH ON
THE HEALTH OF WOMEN OUTLINES THE
GOALS, NIH-WIDE GOALS,
INTERSECTING WITH THE INSTITUTE
AND CENTER STRATEGIC PLANS, AND
WE WORK WITH THEM IN PARTNERSHIP
THROUGH A COORDINATING
COMMITTEE, CCRWH, AND RESEARCH
PRIORITIES BY RESEARCH AGENDA
SETTING, DEVELOP WORKING GROUPS,
FUNDING OPPORTUNITIES,
WORKSHOPS, TO ACHIEVE THAT
VISION THAT I JUST MENTIONED TO
YOU.
IN THIS NEW NIH-WIDE STRATEGIC
PLAN FOR RESEARCH ON THE HEALTH
OF WOMEN WE HAVE EXPANDED
MULTI-DIMENSIONAL FRAMEWORK WE
INTRODUCED IN THE LAST PLAN.
AND AT THE BOTTOM YOU CAN SEE A
LIFE COURSE PERSPECTIVE.
YOU ALSO SEE BIOLOGICAL FACTORS
THAT WE ARE CRITICALLY
IMPORTANT -- THAT ARE CRITICALLY
IMPORTANT TO DETERMINING HEALTH.
WE KNOW SOCIAL AND ENVIRONMENTAL
EXPOSURES, SOCIAL DETERMINANTS
OF HEALTH, AND CONTEXT AFFECT
HEALTH AND DISEASE AS WELL.
IN ORDER TO LEARN AS MUCH AS WE
CAN ABOUT THE HEALTH OF WOMEN
AND ADDRESS ALL WOMEN IN A
PERSONALIZED WAY NEED TO
CONSIDER INTERSECTION OF
BIOLOGICAL FACTORS AND ASSOCIATE
FACTORS.
WE DO KNOW, FOR EXAMPLE,
EPIGENETIC FACTORS CAN HAVE
MULTI-GENERATIONAL CONSEQUENCES,
FOR EXAMPLE.
WE'RE COMPLEMENTARY TO SCIENCE
BEING CONDUCTED BY INSTITUTES
AND CENTERS, PARTNERING ON ORWH
SIGNATURE PROGRAMS.
FIRST ON THE FAR LEFT IS OUR
BUILDING INTERDISCIPLINARY
RESEARCH CAREERS IN WOMEN'S
HEALTH, A MENTORED CAREER
DEVELOPMENT PROGRAM, PURPOSE OF
WHICH IS TO EXPAND CADRE OF
PEOPLE DOING WOMEN'S HEALTH
RESEARCH.
WE HAVE NOW FUNDED OVER 800
SCHOLARS, BIRCWH SCHOLARS, WITH
EIGHT INSTITUTES, CENTERS, AND
OFFICES.
SECOND, SPECIALIZED CENTERS OF
RESEARCH EXCELLENCE ON SEX
DIFFERENCES, A DISEASING A NOT
PARTICULAR PROGRAM LOOKING AT
SEX DIFFERENCES IN HEALTH AND
DISEASE.
TWO ADMINISTRATIVE SUPPLEMENT
SUPPLEMENT PROGRAMS IN THE
MIDDLE.
NIH'S FIRST R01 ON INTERSECTION
OF SEX AND GENDER, AND MORE
RECENTLY R21 AND R01 FOCUSING ON
CHRONIC CONDITIONS IN WOMEN
HIGHLIGHTED IN THE REPORT DR.
SCHWETZ OUTLINED.
TO SEE A LITTLE BIT MORE ABOUT
WHERE WE ARE IN THE COUNTRY IN
TERMS OF BIRCWH PROGRAMS, SPREAD
THROUGHOUT THE COUNTRY, THEY
HAVE SUPPORTIVE TIME TO PURSUE
WOMEN'S HEALTH AND SEX
DIFFERENCES RESEARCH, CURRENTLY
19 ACTIVE PROGRAMS AND WE
SUPPORT 42 INSTITUTIONS SINCE
THE PROGRAM WAS INITIATED.
THIS IS A BUSY SLIDE,
INTENTIONALLY BUSY TO DISPLAY
RANGE OF SCIENCE BEING SUPPORTED
BY SPECIALIZED CENTERS OF
RESEARCH EXCELLENCE ON SEX
DIFFERENCES, WHETHER IT'S SEX
AND AGE DIFFERENCES IN IMMUNITY,
FOR EXAMPLE TO INFLUENZA, OR
STRESS AND NEURAL REGULATION,
REPRODUCTIVE AGING AND HEALTH
OUTCOMES AT THE BRIGHAM,
HYPERTENSION ACROSS THE HEALTH
SPAN THROUGH COMMUNITY OUTREACH
LOOKING AT HYPERTENSION RISK IN
WOMEN WITH AUTOIMMUNE DISEASE IN
PARTICULAR.
AND YOU CAN SEE THE VARIETY OF
AMAZING TOPICS AND INCREDIBLE
SCIENCE BEING SUPPORTED BY ORWH
AND THE INSTITUTES AND CENTERS
PROMINENTLY FEATURED HERE.
MORE RECENTLY, WE TOOK AN
ADDITIONAL LOOK FOLLOWING THE
U.S. CENSUS DATA BEING UPDATED,
EVERY TEN YEARS, THIS
INFORMATION IS PROVIDED WHERE WE
OUTLINED THE HEALTH OF
POPULATIONS OF WOMEN THAT ARE IN
THE NIH DESIGNATED HEALTH
DISPARITIES POPULATIONS,
UNDERSTUDIED POPULATIONS.
AND SO THIS DATA BOOK OUTLINES
SPECIFIC ATTENTION TO THOSE
POPULATIONS INCLUDING
SOCIOECONOMICALLY DISADVANTAGED
POPULATIONS, AS WELL AS
UNDERSEARCHED RURAL POPULATIONS,
DATA AVAILABLE THERE IN DETAIL.
YOU HEARD FROM DR. SCHWETZ ABOUT
SEX AS A BIOLOGICAL VARIABLE
POLICY, SUPPORTING NIH'S EFFORTS
TO ENHANCE REPRODUCIBILITY
THROUGH RIGOR AND TRANSPARENCY
INITIATED IN 2016.
AND HERE'S JUST A VERY HIGH
LEVEL VIEW OF SOME OF THE R01s
SUPPORTED ON THE INTERSECTION OF
SEX AND GENDER INFLUENCES, R01,
FOR EXAMPLE LOOKING AT
MENOPAUSE-DRIVEN DNA DAMAGE,
MALES AND FEMALES PROCESS PAIN
DIFFERENTLY, STRESS,
INFLAMMATION, CORONARY
ENDOTHELIAL INJURY, PREECLAMPSIA
HERE, AND SUBSTANCE USE AND
EPIGENETIC MODIFICATIONS AT THE
INTERSECTION OF SEX AND GENDER.
HIGHLIGHTING HERE A RESPONSE TO
CONGRESSIONAL REQUEST WE HOSTED
A WORKSHOP THAT RESULTED IN THE
REPORT ON CHRONIC DISEASES THAT
WAS HIGHLIGHTED EARLIER BY DR.
SCHWETZ AND HERE IS ONE OF THE
ACTIONS NIH TOOK.
IN COLLABORATION WITH THESE
INSTITUTES AND CENTERS, WE
INITIATED AN R21 AND R01 TO LOOK
AT CHRONIC DISEASES THAT ARE
UNDERSTUDIED AMONG WOMEN.
AS YOU HEARD, MULTI-MORBIDITY IS
MORE COMMON IN WOMEN THAN MEN.
WE NEED TO BETTER UNDERSTAND
THAT COMPLEX RELATIONSHIP
BETWEEN THOSE MULTIPLE DISEASES
WHEN THEY CO-OCCUR.
AS YOU KNOW, IN THE UNITED
STATES MATERNAL MORBIDITY AND
MORTALITY RATES HAVE BEEN
DISTURBINGLY HIGH.
HERE ARE DATA FROM CDC ON
MATERNITY MORTALITY RATES BY
RACE AND ETHNICITY, FOR TWO
YEARS.
YOU CAN SEE DIFFERENCES BY RACE
AND ETHNICITY.
NIH LEADERSHIP TOOK THIS ISSUE
ON SEVERAL YEARS AGO.
AND PUT RESOURCES TOGETHER TO
FORM A MATERNAL MORTALITY TASK
FORCE AND THEN THE "IMPROVE"
INITIATIVE WHICH RECEIVED
CONGRESSIONAL FUNDING.
IMPROVE INITIATIVE IS CO-LED BY
LEADERSHIP OF ORWH, NICHD, NINR,
AT THE CENTER OF THAT INITIATIVE
ARE MATERNAL HEALTH CENTERS OF
EXCELLENCE.
I'M PLEASED TO SHARE WE'RE NOW
FUNDING TEN CENTERS OF
EXCELLENCE AROUND THE COUNTRY,
MANY OF THEM IN LOCATIONS WHERE
THERE IS LITTLE OBSTETRIC CARE.
AND IN ADDITION TO THOUGH
CENTERPIECE THERE IS WERE A
VARIETY OF OTHER PROGRAMS,
DISSEMINATION AND
IMPLEMENTATION, RADX-TECH
CHALLENGE, COMMUNITY PROGRAM TO
NAME A FEW, THAT ARE ADDRESSING
COMMUNITY ENGAGEMENT AND
LISTENING TO THE COMMUNITIES
ABOUT WHAT ISSUES ARE MOST
IMPORTANT TO THEM.
SO THAT WE CAN ADDRESS THESE
ISSUES IN A PATIENT-CENTERED
COMMUNITY ENGAGED WAY.
WE ALSO HOST AN NIH MATERNAL
MORBIDITY AND MORTALITY WEB
PORTAL SHARING INFORMATION WITH
THE PUBLIC.
ONE OF THE EFFORTS THAT THE
OFFICE OF DISEASE PREVENTION
LEADS HERE AT NIH IS PATHWAYS TO
PREVENTION PROGRAM, A RIGOROUS
APPROACH LOOKING AT A VARIETY OF
ISSUES AND MATERNAL MORBIDITY
AND MORTALITY AND POSTPARTUM
HEALTH IN PARTICULAR, A SELECTED
AS A TOPIC OF INTEREST SEVERAL
YEARS AGO.
EVIDENCE REVIEW, INDEPENDENT
PANEL REPORT, FEDERAL PARTNERS
REPORT RELEASED MORE RECENTLY.
THE GRAPHIC ON THE RIGHT
HIGHLIGHTS ONE OF THE TOPICS
THAT IS SALIENT TO THIS REPORT,
THAT THE IMPORTANCE OF LOOKING
AT INDIVIDUAL SOCIAL CONTEXT AND
LIFE COURSE PERSPECTIVE IS GOING
TO BE CRUCIAL TO ADDRESSING THE
MATERNAL MORTALITY CRISIS IN
THIS COUNTRY.
ORWH WITH PARTNERS LET A
COLLABORATION WITH THE GATES
FOUNDATION.
LAST YEAR HOSTED A MEETING HERE.
AS A RESULT OF THAT, WITH THE
INPUT OF 250 INDIVIDUALS FROM
OVER 50 COUNTRIES DEVELOPED AN
OPPORTUNITY MAP.
THIS OPPORTUNITY MAP IS FOCUSED
ON INNOVATION, ANOTHER TOPIC OF
IMPORTANCE TO ORWH, AND IT
OUTLINES 50 EQUITABLE HIGH
RETURN OPPORTUNITIES TO ADVANCE
GLOBAL HEALTH INNOVATION FOR
WOMEN.
WE ALSO COLLABORATE WITH OTHER
OFFICES WITHIN THE NIH OFFICE OF
THE DIRECTOR, HERE I'M
HIGHLIGHTING AN OFFICE OF AIDS
RESEARCH COLLABORATION WHERE WE
ARE FOSTERING INTERDISCIPLINARY
INTERSECTIONAL RESEARCH AS WELL.
AND HERE IS A PUBLICATION
RECENTLY IN THE "THE LANCET" TT
ADDRESSED MULTIPLE DOMAINS,
SOCIAL AND STRUCTURAL
DETERMINANTS OF HEALTH,
POPULATION SPECIFIC ASPECTS LIKE
PREGNANT AND LACTATING PEOPLE,
INCLUDING LIFESPAN APPROACH AS
WELL AS MULTI-MORBIDITY.
THIS HAS BEEN PUT FORWARD BY
PRESIDENT BIDEN TO ADVANCE
WOMEN'S HEALTH RESEARCH, HERE
ARE KEY POINTS, YOU HEARD ABOUT
SOME EARLIER.
AT A HIGH LEVEL PRIORITIZING
INVESTMENT IN WOMEN'S HEALTH
RESEARCH, INTEGRATING ACROSS THE
CENTER PORTFOLIO, GALVANIZING
RESEARCH, ASSESSING UNMET NEEDS.
AND THIS EXECUTIVE ORDER EXTENDS
ACROSS-MULTIPLE U.S. GOVERNMENT
PARTNERS.
HERE ARE 11 FEDERAL AGENCIES, A
MULTI-AGENCY CROSS-CUTTING
EFFORT DESIGNED TO SUPPORT NEW
INTERDISCIPLINARY WOMEN'S HEALTH
RESEARCH AND BE TRANSFORMATIVE
IN THE PROCESS.
YOU CAN SEE OUR PARTNERS
OUTLINED HERE.
AT A HIGH LEVEL, A FEW OF THE
STEPS WE'VE TAKEN THUS FAR,
ALIGN WITH THIS EXECUTIVE ORDER,
ONE OF THE ORDERS IS SUPPORTING
INNOVATION, CROSS-SECTOR
COLLABORATION.
SO TO SUPPORT PRIVATE SECTOR
INNOVATION WE'RE MAKING
ADDITIONAL INVESTMENTS HERE,
INCREASING SBIR AND STTR
INVESTMENTS BY 50% TO BRIDGE THE
GAP BETWEEN PERFORMANCE OF THE
BASIC SCIENCE AND
COMMERCIALIZATIONING TAKING
RESEARCH TO THE PEOPLE MAKING
SURE THERE'S REAL WORLD CLINICAL
BENEFIT OF THE RESEARCH
RESUPPORTING, CREATING A FRONT
DOOR FOR FUNDING OPPORTUNITIES
ON WOMEN'S HEALTH, YOU CAN COME
TO THE SITE AND LEARN ABOUT
WOMEN'S HEALTH RESEARCH FUNDING
ACROSS ALL INSTITUTES AND
CENTERS.
CREATING COMPREHENSIVE RESEARCH
AGENDA ON MENOPAUSE, ORWH,
NHLBI, NIA AND OTHERS PARTNERING
ON PATHWAYS TO PREVENTION
PROGRAM FOCUSED ON MID-LIFE
HEALTH OF WOMEN AND MENOPAUSE
RESEARCH GAPS.
AND WE RECENTLY LAUNCHED OUR
FIRST EVER NOTICE OF SPECIAL
INTEREST LINKED TO EVERY SINGLE
NIH PARENT FUNDING OPPORTUNITY
ANNOUNCEMENT COGGER A WIDE RANGE
OF DISEASES, WIDE RANGE OF TYPES
OF SCIENCE AVAILABLE, AND WIDE
RANGE OF MECHANISMS.
SO WE'RE PROVIDING MULTIPLE
PATHWAYS FOR INVESTIGATORS AND
SCIENTISTS TO BE ABLE TO ACCESS
NIH FUNDING AND EMPHASIZING
WOMEN'S HEALTH RESEARCH IN THE
PROCESS.
YOU HEARD MID-LIFE HEALTH OF
WOMEN IS A TOPIC OF INTEREST IN
THE EXECUTIVE ORDER, A FEW
STATISTICS MORE THAN A MILLION
WOMEN ENTER MENOPAUSE EACH YEAR
IN THE UNITED STATES, 80
EXPERIENCE VASOMOTOR SYMPTOM.
IT'S A TRANSITION AND NORMAL
PART OF REPRODUCTIVE AGING, IT
CAN BE -- CAN COINCIDE WITH
MID-LIFE HEALTH USUALLY.
AT THAT POINT CAN BE A HEALTH
INFLECTION POINT.
AND IT CAN USHER IN THE ONSET OF
CHRONIC DISEASES OR EXACERBATION
OF CHRONIC DISEASES.
FOR EXAMPLE, EARLIER AGE OF
NATURAL MENOPAUSE IS ASSOCIATED
WITH HEART DISEASE AND
OSTEOPOROSIS RISK, WE WANT TO
MAKE SURE WE'RE UNDERSTANDING
THE RISK OF CHRONIC DISEASE OF
MID-LIFE HEALTH OF WOMEN AND AS
MANY STRATEGIES AS POSSIBLE TO
ADDRESS SYMPTOMS SUCH AS SLEEP
DISTURBANCE AND OTHERS.
THAT INFORMATION IS AVAILABLE ON
THIS WEBSITE INCLUDING RESEARCH
EFFORTS FROM ACROSS NIH, I'M
HIGHLIGHTING A RECENT
PUBLICATION WITH NIH CO-AUTHORS
SUMMARIZING ROBUST WORK DONE BY
NIH AND WOMEN'S HEALTH
INITIATIVE OVER THE MANY LAST 30
YEARS.
IN ADDITION TO THE OTHER EFFORTS
I MENTIONED, EXECUTIVE ORDER
CALLS FOR LOOKING AT BIOMARKERS
AND OTHER WAYS, OTHER PATHWAYS
TO DISCOVERY.
SO NIH HAS ANNOUNCED OUR
INTENTION TO EXPLORE BIOMARKER
DISCOVERY, TO PREVENT, DIAGNOSE,
TREAT CONDITIONS THAT AFFECT
WOMEN UNIQUELY.
THIS EFFORTS IS LED BY EUNICE
KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT HIGHLIGHTED ON
THE RIGHT, ON THE STREET NOW
LOOKING AT WAYS TO UNDERSTAND
INITIATION OF ENDOMETRIOSIS, A
DISEASE THAT GOES UNDIAGNOSED
FOR MANY YEARS, PROGRESSION AND
PATHOPHYSIOLOGY.
AND OF COURSE IN THE DATA SPACE
WE'RE MAKING SURE WE CAN
STANDARDIZE DATA, LEARN MORE
FROM EVERY STUDY AND IMPROVE
DATASETS THAT ARE AVAILABLE TO
RESEARCHERS.
WE PUT TOGETHER INFORMATION
ABOUT NIH INVESTMENTS WHICH ARE
SUBSTANTIAL, IN ALL OF THESE
TOPICS, IN A SINGLE PLACE FOR
YOU.
MORE THAN 60 MILLION WOMEN ARE
LIVING WITH CARDIOVASCULAR
DISEASE INCLUDING HYPERTENSION,
YOU HEARD EARLIER THAT OVER 2/3
OF THE PEOPLE AFFECTED BY
ALZHEIMER'S DISEASE ARE WOMEN.
AND ABOUT 41% OF WOMEN HAVE
EXPERIENCED SEXUAL VIOLENCE,
PHYSICAL VIOLENCE, STALKING.
AND THAT HAS HEALTH
CONSEQUENCES.
THAT INFORMATION IS AVAILABLE.
AS WELL AS RESEARCH GAPS IN
THESE NIH FACTSHEETS.
AND IF YOU WANT TO LEARN MORE
ABOUT THIS INFORMATION, YOU CAN
CERTAINLY FOLLOW US ON SOCIAL
MEDIA AND THE INFORMATION IS
AVAILABLE HERE.
I WANT TO HIGHLIGHT ON THE RIGHT
LOWER PORTION OF THE SLIDE A
VARIETY OF HEALTH MATERIALS IN
COLLABORATION WITH THE FDA,
O.D., NATIONAL INSTITUTE OF
GENERAL MEDICAL SCIENCES,
AVAILABLE TO THE PUBLIC TO LEARN
ABOUT SEX AND GENDER INFLUENCES
SABV POLICY AND MORE.
I'M SURE DR. SCHWETZ AND I WOULD
BE HAPPY TO TAKE ANY QUESTIONS
YOU MIGHT HAVE.
THANKS.
>> THANK YOU, JANINE.
ANY QUESTIONS?
QUITE A COMPREHENSIVE REVIEW.
THERE'S A LOT GOING ON.
YES?
>> YES, COMPREHENSIVE.
>> TURN THE MIC ON.
>> SORRY.
THIS IS REMARKABLE WORK, VERY
IMPRESSIVE.
I'M JUST WONDERING YOU'RE
FOCUSING ON SO MANY CONDITIONS
AND SO ON THAT AFFECT WOMEN, AND
I DO WONDER HOW MUCH
CROSS-LEARNING THERE IS ACROSS
THE DIFFERENT RESEARCH GROUPS.
I'M MORE IN THE INFECTIOUS
DISEASE HIV KIND OF SPACE, AND
WE'VE LEARNED A LOT ABOUT HOW
YOU RECRUIT AND RETAIN WOMEN, ET
CETERA.
I ASSUME SOME ARE RELEVANT TO
CARDIOVASCULAR, I'M CURIOUS HOW
MUCH IS THE CROSS-RESEARCHER
LEARNING?
>> I THINK WHAT YOU'RE ASKING
ABOUT, CROSS-TOPIC
INTERDISCIPLINARY RESEARCH AND
HOW MUCH LEARNING THERE IS
ACROSS THOSE AREAS WITH
PARTICULAR ATTENTION TO HIV AND
INFECTIOUS DISEASE ON GLOBAL
BASIS.
>> I ACTUALLY MEANT BETWEEN HIV,
CARDIOVASCULAR DISEASE.
>> I SEE, GOT IT.
>> I'M SURE THEY ARE RELEVANT.
>> BETWEEN HIV, FOR EXAMPLE, AND
CARDIOVASCULAR DISEASE, SO
YOU'RE POINTING TO A CHALLENGE
AS WELL AS ONE OF THE AMAZING
STRENGTHS OF NIH.
EACH OF THE INSTITUTES HAS
INCREDIBLE DEPTH IN THE RESEARCH
IN THEIR MISSION AREAS.
AND SO ONE OF THE ROLES OF IS TO
HELP CONNECT THOSE DOTS.
THROUGH THAT NIH COORDINATING
COMMITTEE FOR RESEARCH ON
WOMEN'S HEALTH, THAT'S ONE OF
THE WAYS WE DO THAT.
BUT ALSO THE INSTITUTES LIKE
NIAID AND NHLBI DO SIGN ON TO
FUNDING OPPORTUNITIES THAT
SUPPORT INTERDISCIPLINARY
RESEARCH EFFORTS.
AND THAT'S ONE OF THE THINGS WE
DO WANT TO SEE INCREASINGS, BUT
MULTIPLE INSTITUTES AND CENTERS
SIGN ON WHEN THERE'S IDENTIFIED
AN AREA OR TOPIC ERESEARCH
QUESTION FOR WHICH
INTERDISCIPLINARY COLLABORATION
WOULD REALLY ADVANCE THE FIELD.
>> HOWARD?
THANKS.
>> YES, DR. CLAYTON, THANK YOU
FOR THIS PRESENTATION.
VERY IMPRESSIVE, IMPORTANT WORK.
STILL MANY UNMET NEEDS FOR
WOMEN'S HEALTH.
I WANT TO ASK ABOUT REGARDING
ALL THESE RFAs, DOES YOUR
OFFICE HAVE A BUDGET TO SUPPORT
ALL THESE R FAs OR DO YOU HAVE
TO CAJOLE I.C.s TO STEP UP IF
THERE HAPPENS TO BE AN
APPLICATION IN THEIR AREA, WHAT
WOULD HELP YOU GET YOUR WORK OUT
THERE AND EXTEND THIS PORTFOLIO?
>> DR. CHANG, THANK YOU FOR THAT
QUESTION.
WE WORK WITH ALL THE INSTITUTES
AND CENTERS.
WE'RE AN OFFICE IN O.D.
AND SO WE LEVERAGE OUR BUDGET BY
PARTNERING WITH THOSE INSTITUTES
AND CENTERS BY IDENTIFYING
OPPORTUNITIES FOR SCIENTIFIC
SYNERGY.
THE INSTITUTES AND CENTERS DO
SIGN ON TO THE FUNDING
OPPORTUNITIES AND WHEN
APPLICATIONS, MERITORIOUS
APPLICATIONS, COME IN, THAT IS
WHEN THE INSTITUTES AND CENTERS
STEP UP AND FUND THOSE RESEARCH
APPLICATIONS IN THEIR MISSION
AREA.
OFTEN ORWH WILL CO-FUND THOSE
APPLICATIONS WHICH IS ONE OF THE
WAYS TO MAKE THOSE LIMITED FUNDS
GO FARTHER.
SO IT REALLY DEPENDS ON SCIENCE
COMING IN.
WE DO SEE ROBUST INTEREST IN
WOMEN'S HEALTH RESEARCH RIGHT
NOW, AND OUR INSTITUTE AND
CENTER PARTNERS ARE STEPPING UP
IN A BIG WAY TO MOVE THAT
FORWARD.
I THINK THAT AS MANY
INTERDISCIPLINARY COLLABORATIVE
APPROACHES THAT WE CAN PROMOTE
WOULD MAKE THAT BE ABLE TO MOVE
A LITTLE MORE QUICKLY.
SO I HOPE THAT ANSWERS YOUR
QUESTION.
>> YEAH, I'LL JUST ADD -- GO
AHEAD, TARA.
>> SORRY.
I WAS GOING TO ADD TWO MORE
THINGS.
ONE, JUST TO EMPHASIZE WHAT
JANINE SAID THE ROLE OF ORWH AND
REALLY ALL OF THE OFFICES WITHIN
DPCPSI AND O.D. ARE TO HELP
COORDINATE AND CATALYZE SCIENCE
ACROSS THE AGENCY.
THAT'S OUR PRIMARY FUNCTION, TO
FACILITATE THAT
INTERDISCIPLINARY AND
CROSS-AGENCY SCIENCE.
THE SECOND THING I WOULD ADD IS
THAT THE -- YOU KNOW, EFFORTS
THAT WERE MENTIONED HERE TODAY
IN PARTICULAR, FOCUS ON ORWH
BECAUSE THAT WAS THE LENS WE
WERE TALKING ABOUT.
BY NO MEANS DOES ORWH OR ORWH'S
BUDGET REFLECT THE FULL SCOPE OF
THE WOMEN'S HEALTH ACTIVITIES
ACROSS NIH.
OBVIOUSLY THE INSTITUTES AND
CENTERS WILL INDIVIDUALLY STEP
UP AND SAY WE WANT TO FUND
RESEARCH IN THIS PARTICULAR AREA
RELATED TO WOMEN'S HEALTH.
THAT'S WHERE ORWH CAN HELP THEM
AND HELP THEM IDENTIFY OTHER
PARTNERS OR TO HELP RAISE
AWARENESS OR THINK ABOUT THE
SCIENCE FURTHER.
BUT I WANT TO EMPHASIZE THAT
POINT, ORWH ALONE IS NOT TAKING
ON THIS CHALLENGE.
>> I'LL REMIND YOU, TARA SHOWED
THIS AT THE BEGINNING.
IF YOU LOOK ACROSS NIH AND
I.C.s, IN 2023, THERE WAS
$4.6 BILLION THAT WAS SPENT
ACROSS THE DIFFERENT I.C.s
DIRECTED TOWARD EITHER HEALTH
ISSUES THAT WERE ONLY INVOLVED
WOMEN OR PRE-DOMINANTLY INVOLVED
WOMEN.
SO THERE WE DON'T HAVE TO CAJOLE
THEM.
THEY ARE PRETTY HEAVILY INVESTED
ALREADY.
WHAT'S REALLY IMPORTANT IS MAKE
SURE IT'S COORDINATED.
OTHER QUESTIONS?
YES?
GO AHEAD, BRIAN.
>> I WAS GOING TO DEVELOP ON THE
EARLIER QUESTION AROUND LESSONS
LEARNED IN ONE HEALTH DOMAIN,
WOMEN'S HEALTH, HOW THAT'S
SHARED.
I BELIEVE YOU'RE TALKING ABOUT
THE INTRAMURAL SIDE, GREAT
OPPORTUNITIES TO DO THAT.
ON THE EXTRAMURAL SIDE, YOU
KNOW, IF I APPLY FOR A GRANT ON
WOMEN'S HEALTH IN HIV, SOMEBODY
ELSE IS DOING SIMILAR WORK IN
CARDIOVASCULAR DISEASE WE MAY
NEVER TALK TO EACH OTHER ON THE
EXTRAMURAL SIDE.
I IMAGINE THESE CENTERS OF
EXCELLENCE THAT YOU'RE FUNDING,
THAT DO SEEM TO HAVE A DISEASE
FOCUS, DO THEY COME TOGETHER TO
SHARE LESSONS LEARNED, OR IS THE
BRIDGE PROGRAM AN EXAMPLE?
I ASSUME -- THE BIRCWH PROGRAM,
FROM WHAT I KNOW OF THE BIRCWH
PROGRAM IT'S A REALLY NICE
OPPORTUNITY TO SORT OF SEE
POPULATION-FOCUSED WORK ACROSS
DISEASES, THOSE INITIATIVES ARE
FAIRLY RARE AT NIH SO I'D LOVE
TO HEAR MORE ABOUT THAT.
>> THANK YOU FOR THAT QUESTION.
ABSOLUTELY.
BOTH BIRCWH AND SCORE MEET
INVESTIGATORS AND SCHOLARS, MEET
ANNUALLY FOR SCIENTIFIC
SYMPOSIUM WHERE INFORMATION IS
SHARED ACROSS THE CENTERS.
THEY ALSO MEET ONLINE MONTHLY,
WITH THE INSTITUTES AND PROGRAM
OFFICIALS, ON A MONTHLY WEBINAR
CALLED FOR THE SCORES.
THERE ARE MANY OPPORTUNITIES FOR
SHARING THAT INFORMATION.
I'LL ALSO ADD IN PARTNERSHIP
WITH NIGMS WE FORMED A NEW
WOMEN'S HEALTH RESEARCH PROGRAM
IN THE IDeA STATES, AND HAD
OUR FIRST WEBINAR WHERE THOSE
FOLKS PRESENTED THEIR WORK
ACROSS, AND THEY SHARED SCIENCE
ADVANCES ACROSS MULTIPLE IDeA
STATES.
MANY, MANY OPPORTUNITIES TO
SHARE INFORMATION.
AND ALSO THE SCORE RECENTLY HAD
A PUBLICATION THAT OUTLINES
THIS, WE WOULD BE HAPPY TO SHARE
WITH YOU.
>> OTHER QUESTIONS?
OKAY.
WELL, THINK WE'RE GOING TO TAKE
A BREAK FOR 20 MINUTES, 25
MINUTES, AND WE'LL BE BACK.
THANK YOU.
>> I THINK WE'RE GOING TO
RECONVENE.
WELCOME TO THE LAST SESSION
TODAY.
WE'RE GOING TO START WITH THE
NEW NETWORK FOR RESEARCH AND
PRIMARY CARE SETTINGS, AND YOU
HEARD MY INTRODUCTION VERY
QUICKLY THAT KIND OF WHAT WAS
THE IMPETUS BEHIND THIS IS
REALLY FEEL LIKE WE NEED TO DO
SOMETHING ABOUT THE DISEASES OF
DESPAIR.
WE NEED TO BE IN THESE
COMMUNITIES WHERE THIS IS
HAPPENING.
WE NEED TO TAKE OWNERSHIP OF
THIS PROBLEM.
AND THE BEST WAY WE'VE THOUGHT
WAS FOCUS ON THE PRIMARY CARE
COMMUNITY AS A RESEARCH
COMMUNITY BECAUSE THAT'S WHO IS
ON THE FRONT LINES SEEING THESE
PROBLEMS.
WE REALIZE HOW CHALLENGING THAT
IS GOING TO BE.
AND WE'RE NOT APPROACHING --
WE'RE APPROACHING CAME.
DR. TARA SCHWETZ WILL PRESENT
THE PLAN.
I LOOK FORWARD TO YOUR COMMENTS.
>> ARE WE UP AND SHARING SLIDES?
>> I THINK SO.
>> OKAY, GOOD.
ALL RIGHT.
WELL, GOOD AFTERNOON, AGAIN,
EVERYONE.
I'M BACK TO TALK ABOUT AN EFFORT
WE'RE REALLY EXCITED ABOUT, AND
WE JUST LAUNCHED LATE LAST WEEK
WHERE WE'RE SETTING UP A
NETWORK, CLINICAL RESEARCH
NETWORK IN PRIMARY CARE SETTING.
OH, OKAY.
WELL, SO, MONICA TOUCHED ON SOE
STUFF.
I'M GOING THROUGH THE FIRST
SLIDES QUICKLY.
THIS IS SOMETHING WE'RE ALL
AWARE OF THAT THE HEALTH OF THE
U.S. POPULATION IS DECLINING AND
OF COURSE THE DECLINE TENDS TO
BE STEEPEST AMONGST THOSE THAT
ARE UNDERSERVED AND
UNDERREPRESENTED IN THE COUNTRY,
AND IN CLINICAL RESEARCH IN
PARTICULAR.
AND THE LIFE EXPECTANCY IN THE
U.S. IS THE LOWEST, ONE OF THE
LOWEST AMONGST OUR OECD PEERS.
YOU CAN SEE THE U.S. ON THIS
CHART, AND I'M GOING TO SKIP
THROUGH THIS QUICKLY.
THIS IS LOOKING AT LIFE
EXPECTANCY VERSUS HEALTH
EXPENDITURES, THE U.S. IS AN
OUTLIER AMONGST MANY OTHER
COUNTRIES.
WE HAVE REALLY HIGH
EXPENDITURES, AND YET WE'RE
STILL NOT SEEING AS MUCH IN
TERMS OF GAINS IN LIFE
EXPECTANCY.
SO, WE WANTED TO THINK ABOUT HOW
WE CAN SHIFT THE NEEDLE ON THIS
AND ENGAGE AND WORK WITH SOME
POPULATIONS THAT WE KNOW ARE
TRADITIONALLY UNDERREPRESENTED
IN RESEARCH AND ARE ALSO
UNDERSERVED IN THE HEALTH CARE
SYSTEM.
AND DISPROPORTIONATELY IMPACTED
BY DISEASE AS WELL.
WE WANT TO THINK ABOUT BARRIERS
PEOPLE FACE TO ACCESSING
CLINICAL RESEARCH, AND YOU CAN
SEE HERE THIS SORT OF BARRIER
CHART HERE TO GETTING TO CARE.
PEOPLE EXPERIENCE BARRIERS
AROUND ACCESS THAT INCLUDES
THINGS LIKE TRANSPORTATION,
ACTUALLY GETTING TO THE SITES,
FINANCIAL CONSTRAINTS, IT COSTS
MONEY TO PARTICIPATE IN THESE
THINGS, WHETHER THAT'S IN TERMS
OF TIME OR, YOU KNOW, EVEN JUST
TRANSPORTATION COST, THINKING
ABOUT CHILD CARE
RESPONSIBILITIES IS ALSO AN
EFFORT THAT VECTOR INTO BOTH
LOGISTICS OF TRANSPORTATION AS
WELL AS FINANCIAL CONSTRAINTS,
AND THEN AGAIN TIME.
THE CONSTRAINTS AROUND PEOPLE'S
WORK SCHEDULE, OBVIOUSLY, IS
ANOTHER ISSUE.
AND THEN THE REPRESENTATION IN
THE WORKFORCE, LANGUAGE
BARRIERS, CULTURAL COMPETENCES,
PHYSICAL ACCESSIBILITY TO SITES.
AND THEN FINALLY AT LEAST
REPRESENTED HERE HEALTH LITERACY
AND TRUST IN THE RESEARCH THAT
IS BEING CONDUCTED.
AND OBVIOUSLY THERE ARE MANY,
MANY MORE BUT BASICALLY WHAT WE
WANT TO SAY IS THERE ARE LOTS OF
BARRIERS.
ONE OF THE THINGS WE WANT TO DO
IS HELP BREAK DOWN SOME OF THESE
BARRIERS BY HELPING TO LAUNCH
THIS NETWORK THAT YOU HEARD A
LITTLE BIT ABOUT THIS MORNING.
SO, TO HELP COMBAT THIS DECLINE
AND THESE INEQUITIES, WE
DESIGNED A PROGRAM TO EXPAND
RESEARCH OPPORTUNITIES TO WHERE
PEOPLE ACTUALLY SEEK CARE BY
INTEGRATING CLINICAL RESEARCH
FURTHER INTO PRIMARY CARE
SETTINGS.
WE WANT TO FACILITATE AND
ACCELERATE ADVANCES FOR ADOPTION
AND IMPLEMENTATION INTO EVERYDAY
CLINICAL CARE SETTINGS AND HELP
ULTIMATELY IMPROVE HEALTH
OUTCOMES FOR ALL AMERICANS.
THAT LAST POINT IS KEY.
YOU HEARD MONICA ECHO THAT
IMPORTANT AS WELL, THE
IMPORTANCE OF TRYING TO MAKE
SURE THAT THE WORK THAT WE DO IS
AVAILABLE TO EVERYONE.
THIS IS A SLIDE YOU SAW THIS
MORNING, I THINK IT NICELY
OUTLINES THE PROGRAM THAT WE'RE
LAUNCHING THIS CARE FOR HEALTH
INITIATIVE, COMMUNITIES
ADVANCING RESEARCH EQUITY FOR
HEALTH.
THINK ABOUT HOW WE CAN INTEGRATE
RESEARCH INTO THE CLINICAL CARE
ENVIRONMENT, TO HELP US AS WE
THINK ABOUT TRUST, BUILDING
TRUST IN COMMUNITIES TO ADDRESS
THE COMMUNITY'S NEEDS AND TO
IDENTIFY THOSE TOPICS THAT ARE
MOST IMPORTANT TO THE
COMMUNITIES THAT WE CAN HELP TO
TACKLE THE CHALLENGES THAT THEY
ARE EXPERIENCING EVERY DAY.
AND THEN WE WANT TO THINK ABOUT
THIS IN A LONGITUDINAL WAY, NOT
JUST IN TERMS OF HOW WE THINK
ABOUT COLLECTING DATA
LONGITUDINALLY BUT ALSO KIND OF
THE DURATION OF THE EFFORT BEING
A LONGITUDINAL EFFORT ACROSS
THINKING ABOUT HEALTH ACROSS THE
LIFESPAN, AND WE KNOW ONE OF THE
THINGS, SOME WERE TALKING ABOUT
THIS EARLIER, THAT'S GOING TO BE
CRITICAL TO LAUNCHING THIS
EFFORT IS TO THINK ABOUT THE
BURDEN OF THE PROVIDERS.
WE'RE TALKING ABOUT PRIMARY CARE
PROVIDERS HERE.
WE KNOW AND WE'VE HEARD THIS,
WE'VE HEARD A LOT ABOUT HOW
PROVIDERS ARE ALREADY OVERWORKED
AND OVERBURDENED, ONE OF THE
THINGS WE WANT TO NOT DO IS
PROVIDE ADDITIONAL BURDEN TO
THEM WHEN WE'RE ACTUALLY TRYING
TO REDUCE THAT.
SO THINKING ABOUT HOW WE CAN BE
CREATIVE IN USING VARIOUS
APPROACHES TO BE ABLE TO DO
THAT.
OF COURSE WHAT WE HOPE, WHAT
WE'RE HOPING IS INCREASE
ADHERENCE TO EVIDENCE-BASED
CARE, TO HELP IMPROVE EFFICIENCY
AND DELIVERY OF CARE.
OKAY.
SO, THE NETWORK REALLY IS TRYING
TO TAKE ON ALL OF THOSE THINGS.
WE WANT TO TALK ABOUT OUR
APPROACH TO IT, AND WHAT WE'RE
AIMING TO ACHIEVE WITH THIS.
SO WE ARE HOPING TO TRY TO
OVERCOME ALL THOSE BARRIERS I
INDICATED BY LEVERAGING THE
INFRASTRUCTURE WE HAVE ACROSS
NIH AND BEYOND TO BE ABLE TO
ENROLL, HELP EXPAND ENROLLMENT
IN EXISTING STUDIES AND WE WANT
TO START SMALL.
WE'RE NOT TRYING TO TAKE TOO BIG
OF A BITE OF AN APPLE HERE.
START SMALL, GO NARROW AND DEEP
WIRED THAN WIDER AND SHALLOW,
PROOF OF CONCEPT, WANT TO MAKE
SURE WE'RE SUCCESSFUL.
EVENTUALLY WHERE WE SEE THIS
DOING IS EXPANDING OUT WHERE WE
CAN ADD SITES AND BE ABLE TO
START NEW STUDIES RATHER THAN
JUST EXPANDING THOSE EXISTING
STUDIES.
AGAIN, WE'RE STARTING SMALL SO
WE CAN SHOW SUCCESS.
WE'RE GOING TO WORK EXISTING
RESEARCH NETWORKS AND WORK WITH
THOSE COLLABORATORS THAT WE
ALREADY HAVE, AND THE
INFRASTRUCTURE THAT WE'RE
ALREADY SUPPORTING TO THEN
EVENTUALLY BUILD OUT AND BRING
ON NEW COLLABORATORS AND NEW
COMMUNITY PARTNERS.
AND AGAIN, I TALKED ABOUT THIS
PREVIOUSLY, BUILDING TRUST WITH
THE COMMUNITIES IS CRITICAL TO
THIS EFFORT.
WE WANT TO BUILD IT IN A WAY
THAT IT'S FLEXIBLE AND THAT IT
ADDRESSES NEEDS OF THE
COMMUNITIES, MAKE SURE WE'RE
ANSWERING QUESTIONS COMMUNITIES
WANT ANSWERED.
THE IDEA BEHIND THIS IS TO
CREATE A MENU OF STUDIES THAT
THE SITES ARE ABLE TO LOOK AT
AND SAY, YOU KNOW, WE ARE REALLY
INTERESTED IN SUBSTANCE ABUSE SO
WE WANT TO DO A STUDY RELATED TO
THAT BUT THOSE OTHER AREAS, THEY
ARE NOT REALLY SOMETHING THAT
WE'RE PRIORITIZING RIGHT NOW.
SO BE ABLE TO ALLOW THE SITES TO
TAILOR TO THEIR NEEDS AND THEIR
CAPABILITIES BECAUSE THEY MAY
NOT BE ABLE TO LAUNCH A TRIAL,
YOU KNOW, THAT IS ON OFFER ON
THE MENU AT LEAST RIGHT NOW.
MAYBE THEY NEED A FEW YEARS TO
BUILD EXPERIENCE, MAYBE THEY ARE
IN THE PROCESS OF DOING
SOMETHING WHERE IT'S GOING TO
PROVIDE INFRASTRUCTURE TO BE
ABLE TO DO THAT, A YEAR OR TWO
DOWN THE ROAD.
AGAIN, THAT'S THE IDEA AROUND
FLEXIBILITY AND TAILORING.
AND REALLY TO HELP LOWER THE BAR
OF DOING RESEARCH IN PRIMARY
CARE SETTINGS.
AND WE'RE HOPING TO DO THIS,
STARTING THIS FISCAL YEAR.
SO WE'VE BEEN BUSY FOR THE LAST
COUPLE MONTHS.
NOW, IN ORDER TO ENSURE
SUCCESSFUL APPROACH WE HAVE TO
PARTNER.
AGAIN, WE WANT TO MAKE SURE
WE'RE BUILDING OFF THE RESOURCES
WE ALREADY HAVE.
WE DON'T HAVE TO START FROM
SCRATCH.
WE HAVE SOME REALLY GREAT
EFFORTS THAT ARE ALREADY
UNDERWAY THAT WE CAN UTILIZE
INCLUDING THE IDEA CLINICAL AND
TRANSLATIONAL RESEARCH NETWORK
THAT EXISTS, THAT NIGMS
SUPPORTS, CLINICAL AND
TRANSLATIONAL SCIENCES AWARDS
FUNDED THROUGH NCATS, THOSE WILL
BE TWO OF OUR MAJOR I THINK
PARTNERS IN THIS EFFORT.
AND THEN OF COURSE WE HAVE THE
COMMUNITY ENGAGED ALLIANCE AND
NIH COLLABORATORY THAT MAY HELP
SUPPORT THIS NETWORK AS WELL,
THE COLLABORATORY WITH
INFRASTRUCTURE AROUND PRAGMATIC
CLINICAL TRIALS, AND TRIAL
DESIGN, AND COMMUNITY ENGAGED
ALLIANCE, CEAL, TO HELP PROVIDE
EXPERTISE AND RESOURCES AND
OTHER THINGS THAT CAN PROVIDE
BEST PRACTICES AROUND WORKING
WITH COMMUNITIES, HELPING US
ENGAGE THE COMMUNITIES.
OUTSIDE OF NIH AS WE THINK ABOUT
WHAT IS AVAILABLE OUTSIDE OF
NIH, WE THINK THAT THERE ARE
OPPORTUNITIES TO LEVERAGE THINGS
LIKE THE PCORI-FUNDED PCORnet,
AND OF COURSE THERE ARE NUMEROUS
OTHER ACTIVITIES ACROSS HHS, AND
WHEN WE THINK ABOUT PARTNERING
WITH OTHER AGENCIES LIKE HRSA,
WITH THE FQHCs, AND, AGAIN,
YOU KNOW, WE WANT TO MAKE SURE
WE'RE DOING THIS THOUGHTFUL AND
SO WE'RE HAVING CONVERSATION WAS
SOME OF THESE ENTITIES BUT I
THINK THAT WHAT WE'LL SEE IS
DOWN THE ROAD WE CAN BE ENGAGE
THEM MUCH MORE EFFICIENTLY ONCE
WE GET THIS THING UP AND RUNNING
AND OFF THE GROUND.
ONE OF THE THINGS THAT I WANTED
TO MAKE SURE THAT I PERSONALLY
AM VERY EXCITED TO TALK ABOUT
TODAY IS TWO OF THE CRITICAL
PIECES OF OUR INFRASTRUCTURE
HERE.
WE BROUGHT ON DR. AMY PATTERSON
TO SERVE AS INTERIM SCIENTIFIC
AND MEDICAL DIRECTOR, AND SHE
COMES TO US FROM NHLBI, SHE'S
BEEN AROUND AT NIH FOR QUITE
SOME TIME.
IN THE O.D. AND NHLBI.
AND REALLY IS AN EXPERT IN
CLINICAL RESEARCH AND CLINICAL
TRIALS.
AND THEN TRINI AJAZI, WHO IS
JOINING US STARTING TECHNICALLY
ON SUNDAY, FROM THE ALLIANCE FOR
CLINICAL TRIALS AND ONCOLOGY,
SERVING AS OUR OPERATIONS
DIRECTOR FOR CARE FOR HEALTH AND
RESPONSIBLE FOR ALL OF THE
COMPONENTS AROUND THE OPERATION
OF THE NETWORK, YOU KNOW,
PLANNING, QUALITY MANAGEMENT.
SHE HAS A TON OF EXPERIENCE IN
REGULATORY COMPLIANCE FOR
TRIALS.
WE'RE REALLY EXCITED ABOUT
HAVING THESE TWO INDIVIDUALS ON
TO HELP BE THE KIND OF BOOTS ON
THE GROUND AND LEADERSHIP MAKING
THE DAY-TO-DAY DECISIONS FOR THE
EFFORT.
AND JUST AS WE TAKE A STEP BACK
AND THINK ABOUT CARE FOR HEALTH
OVERALL I WANTED TO PROVIDE A
LITTLE BIT OF INFORMATION ON HOW
WE'RE THINKING ABOUT THE KIND OF
VERY HIGH LEVEL GOVERNANCE OF
THIS PROGRAM.
SO, THERE'S AN NIH OVERSIGHT
COMMITTEE COMPOSED OF INSTITUTE
AND CENTER DIRECTORS, SOME
SITTING IN THE ROOM.
AND THEY ARE RESPONSIBLE FOR
HELPING TO PROVIDE GUIDANCE AND
OVERALL OVERSIGHT OF THE
EFFORTS.
I MENTIONED THE SCIENTIFIC AND
MEDICAL DIRECTOR, OFFICE
DIRECTOR, THEY ARE REALLY GOING
TO BE THE ONES MAKING THOSE
DECISIONS ABOUT WHAT STUDIES
MAKE SENSE FOR THE PROGRAM, AT
LEAST TO PUT ON THAT MENU, AND
WHAT -- YOU KNOW, TO HELP THE
SITES TO BE ABLE TO PROVIDE THE
INFRASTRUCTURE TO BE ABLE TO --
AND RESOURCES TO BE ABLE TO DO
THE STUDIES THAT ARE ON OFFER,
IF YOU WILL.
AND THEN THE WORK OF THE
SCIENTIFIC AND MEDICAL DIRECTOR
WILL BE CLOSELY COORDINATED AND
INFORMED BY THE SCIENTIFIC
COMMITTEE THAT WE HAVE THAT'S
GOING TO PROVIDE RECOMMENDATIONS
AROUND STUDY AND SITE SELECTION
AND PROTOCOL OVERSIGHT.
AND THEN THIS IS SORT OF A HIGH
LEVEL OVERVIEW OF THE COMPONENTS
OF CARE FOR HEALTH.
I ALREADY TALKED ABOUT THE FIRST
TWO.
BUT OBVIOUSLY WE'RE THINKING
ABOUT THINGS LIKE THE IRB AND
THE SMB, AND HOW WE CAN CONTINUE
TO ENGAGE WITH THE COMMUNITY AND
ENSURE, AGAIN, WE KNOW THE
COMMUNITIES ARE NOT
ONE-SIZE-FITS-ALL EFFORTS BUT WE
WANT TO MAKE SURE WE'RE HEARING
FROM THE DIFFERENT COMMUNITIES
AND THAT WE ARE ABLE TO
FACILITATE AN EFFORT THAT IS IN
A LOT OF WAYS COMMUNITY DRIVEN
AND HELPS, AGAIN, TO IDENTIFY
SOLUTIONS FOR THE PROBLEMS THAT
COMMUNITIES ARE INTERESTED IN
SEEING, YOU KNOW, KIND OF
RESULTS FROM.
WE'RE THINKING ABOUT DOWN THE
ROAD INDUSTRY PARTNERS AS THIS
CONTINUES TO GROW AND DEVELOP
AND TO HELP ENGAGE WITH INDUSTRY
AND OTHERS OUTSIDE KIND OF THE
FEDERAL GOVERNMENT.
BUT SPECIFICALLY, I'M GOING TO
FOCUS MORE ON TODAY AS THE
NETWORK RESEARCH HUBS BECAUSE
THAT IS WHERE THE RUBBER IS
GOING TO MEET THE ROAD AND WHERE
WE'RE GOING TO TRY TO BUILD
CLINICAL SITES AND THEY ARE
GOING TO BE THE ONES, THE BOOTS
ON THE GROUND DOING THE WORK
WITH THE COMMUNITIES EACH AND
EVERY DAY.
WE'RE DEVELOPING THIS OUT.
WE HAVE A ROA ON THE STREET.
I'LL GET TO THAT BUT ESSENTIALLY
WHAT WE HAVE HERE IS A NETWORK
THAT'S GOING TO BE RESPONSIBLE
FOR CONDUCTING RESEARCH IN
PRIMARY CARE SETTINGS, IN
COLLABORATION WITH AND WORKING
CLOSELY WITH THE CLINICAL SITE
TO, AGAIN, LEVERAGE SOME
EXISTING STUDIES THAT WE HAVE AT
NIH THAT ARE ONGOING THAT CAN BE
ADDED TO THAT MENU THAT FIRST
YEAR AND THEN AS WE ADVANCE DOWN
THE ROAD BRING A NEW STUDIES,
IDENTIFIED BY THE COMMUNITY OR
THAT THE INSTITUTES AND CENTERS
ARE INTERESTED IN SUPPORTING.
PARTICIPANT AND COMMUNITY
ENGAGEMENT IS A CRITICAL PIECE
OF THE EFFORT.
AND WE WANT TO MAKE SURE THEY
ARE REALLY INVOLVED THROUGHOUT
THE PROCESS AND THROUGHOUT
MULTIPLE COMPONENTS OF THE
PROCESS.
AND SHARE APPROACHES AND
STRATEGIES FOR ENGAGEMENT.
OF COURSE IMPLEMENTING
INNOVATION IN CLINICAL STUDY
DESIGN IS IMPORTANT.
ONE THING WE'RE THINKING ABOUT
HOW WE CAN ENSURE THAT WE ARE
MINIMIZING THE BURDEN ON THE
PROVIDERS BECAUSE THAT'S GOING
TO BE -- IF WE PUT TOGETHER A
BRILLIANT STUDY THAT'S
IMPOSSIBLE TO DO FROM PROVIDER
PERSPECTIVE IT'S NOT GOING TO BE
SUCCESSFUL SO WANT TO BE SURE TO
CONSIDER THAT AS THESE ARE BEING
DEVELOPED PARTICULARLY AS WE
THINK ABOUT NEW STUDIES IN THE
PIPELINE.
PARTICIPATION, COORDINATED
INFRASTRUCTURE SUPPORTING
RESEARCH AND PRIMARY CARE
SETTINGS, THIS IS PROBABLY THE
MOST IMPORTANT PIECE, REALLY
PROVIDING A LOT OF THAT CLINICAL
AND CLINICAL TRIAL SUPPORT THAT
THE SITES MAY NOT HAVE DIRECTLY
AND MAY LEVERAGE FROM SITES THEY
ARE CONNECTED WITH IN THE
NETWORK OR THE RESOURCES WE
PROVIDE HERE AT NIH OR THROUGH
NIH.
I ALREADY MENTIONED THAT WE HAVE
A FUNDING OPPORTUNITY THAT'S OUT
ON THE STREET.
IT HAS BEEN OUT FOR THE LAST
MONTH AND A HALF OR SO.
AND WE'RE TRYING TO INVITE
APPLICATIONS FOR ORGANIZATIONS
TO SERVE AS NETWORK RESEARCH
HUBS.
THIS IS A TWO-YEAR PILOT.
WE'LL SEE HOW THIS GOES.
AGAIN, WE'RE STARTING SMALL, SO
WE'RE ONLY GOING TO FUND A
HANDFUL OF SITES TO PARTICIPATE
IN THIS EFFORT BECAUSE WE WANT
TO SHOW PROOF OF CONCEPT AND
SHOW WE CAN BE SUCCESSFUL IN
DOING THIS BEFORE WE START
SCALING IT UM AND OUT.
WE HAVE LIMITED ELIGIBILITY TO
ORGANIZATIONS THAT FOCUS ON
SERVING RURAL COMMUNITIES, AND
THIS IS DEFINED BY THOSE THAT
ARE LOCATED IN SPACE OR
JURISDICTIONS WITH AT LEAST 25%
OF THE CENSUS TRACT DEFINED AS
RURAL, AND THIS IS A HRSA
DEFINITION THAT WE'RE UTILIZING
FOR THIS PURPOSE.
WE WANT TO MAKE SURE THEY ARE
CONNECTED WITH EXISTING
INFRASTRUCTURE AT NIH.
SO WE HAVE -- OR ACROSS THE
BOARD, THEY MUST BE PART OF ONE
OF THE THREE NETWORKS HERE THAT
ARE LISTED, IDeA CTC, CTSA
PROGRAM, PCORnet.
AGAIN, YOU KNOW, JUST TRYING TO
MAKE SURE THAT WE'RE HITTING THE
PEOPLE THAT WE THINK WILL BE
MOST READY AND PRIMED TO BE ABLE
TO TAKE ON THIS CHALLENGE AND
WORK WITH US ON THIS.
AND THE DEADLINE IS TOMORROW.
SO WE HAD IT OUT FOR AS LONG AS
WE POSSIBLY COULD.
I KNOW WE'VE HEARD FROM THE
COMMUNITY THEY WISH IT WAS
LONGER.
I WISH IT WAS ABLE TO BE OUT
LONGER TOO.
IT WAS OUT FOR SIX WEEKS.
SO WE'VE BEEN TRYING TO HOLD
TECHNICAL ASSISTANCE WEBINARS TO
HELP PEOPLE ANSWER QUESTIONS AND
ENSURE THAT THEY ARE -- THEY
UNDERSTAND WHAT THE ELIGIBILITY
REQUIREMENTS ARE, WHAT WE'RE
LOOKING FOR.
THIS IS A ROA, USING OTHER
TRANSACTION, WE'RE BASICALLY IN
ADDITION TO FLEXIBILITY THAT I
MENTIONED BEFORE, WHAT WE'RE
GOING TO DO IS WE'RE GOING TO
THEN UNDERTAKE NEGOTIATIONS
PROCESS SO WE'LL BE ABLE TO WORK
WITH THE FOLKS THAT WE'VE
NARROWED, WE'LL NARROW IN ON TO
MAKE SURE THAT WE CAN --
EVERYONE CAN BE SUCCESSFUL HERE.
AND AGAIN I MENTIONED IT'S A
TWO-YEAR PILOT, THE FIRST YEAR
WE'RE GOING TO FUND RESEARCH
NETWORK HUBS LEVERAGING THE
EXISTING STUDIES, STUDIES THAT
ARE ALREADY UNDERWAY.
AND THEY MIGHT BE STUDIES THAT
NEED TO EXPAND THEIR ACCRUAL.
THEY WANT TO -- THEY ARE NOT
DOING AS WELL AS THEY WOULD LIKE
WITH CERTAIN POPULATIONS IN
PARTICULAR RURAL POPULATIONS
SINCE THAT'S THE FOCUS.
THIS IS AN OPPORTUNITY TO
LEVERAGE THIS NETWORK WITH THOSE
STUDIES.
AND THEN AS WE KIND OF GET OUR
FEET WET AND AS I SAY WE'RE
BUILDING THE PLANE WHILE WE'RE
FLYING IT BUT ALSO BUILDING
ANOTHER PLANE WHILE IT'S ON THE
RUNWAY GETTING READY TO TAKE
OFF, THINKING ABOUT YEAR 2 AND
THE SECOND PLANE, HOW WE CAN
THINK ABOUT NEW STUDIES THAT ARE
GOING TO COME INTO THIS PROGRAM.
AND OF COURSE WE'RE ALWAYS GOING
TO BE THINKING ABOUT HOW WE CAN
DO THIS BETTER, HOW WE CAN
MODIFY IT AS WE GO, AND THAT'S
WHERE THAT FLEXIBILITY COMES
INTO PLAY.
AND THENLY SAY WE'VE SPENT A
LOT -- I WILL SAY WE'VE SPENT
TIME OVER A MONTH AND A HALF TO
LISTEN TO THE COMMUNITY, HELD
FOUR LISTENING SESSIONS ON A
VARIETY OF TOPICS, A HOST OF
PARTICIPANTS RANGING FROM
HOSPITAL SYSTEMS, RESEARCHERS,
PATIENTS AND COMMUNITY
ORGANIZATIONS, ACROSS THE
FEDERAL GOVERNMENT TO HEAR THEIR
THOUGHTS ON THIS IDEA, HELP US
POKE HOLES IN IT AND LET US KNOW
WHERE, YOU KNOW, THEY THINK FROM
THEIR EXPERIENCE WE'RE GOING TO
HAVE SOME CHALLENGES, HELP US
BIT OF AREAS THAT WE NEED TO
THINK THROUGH AS WE'RE
DEVELOPING THIS.
AND I WILL SAY WE'VE HAD SOME
REALLY INCREDIBLE SUGGESTIONS
AND FEEDBACK FROM THE GROUPS,
THOUGHTFUL CONVERSATIONS, ALL
THAT WENT INTO INFORMING A
PUBLIC WORKSHOP, A BIG PUBLIC
WORKSHOP THAT WE HELD LAST
FRIDAY, WE HAD 550 PEOPLE IN
ATTENDANCE, AND I THINK THEY
COUNTED THERE WERE OVER 100
QUESTIONS SUBMITTED, A GREAT
SHOWING AND I THINK THE TAKEHOME
FROM WHAT WE HEARD IN A LOT OF
WAYS IS A TREMENDOUS AMOUNT OF
SUPPORT FOR THIS IDEA, AND
MAKING SURE THAT WE'RE DOING IT
IN A REALLY THOUGHTFUL WAY AND
OF COURSE THAT GETS TO ONE OF
THE POINTS ABOUT HAVING THIS BE
A SUSTAINED AND ENDURABLE EFFORT
BECAUSE WHAT WE HEARD OVER AND
OVER AGAIN WAS THAT WE CAN'T
JUST ENGAGE THESE COMMUNITIES ON
A POP IN, POP OUT, ONE OFF
BASIS.
WE NEED TO MAKE SURE THIS IS
ENDURING.
THAT'S OUR INTENTION, WE'RE
TAKING IT TO THE HEART WITH THE
IDEA OF KEEPING IN MIND
PROVIDERS THAT WE'RE GOING TO BE
WORKING WITH IN THIS EFFORT ARE
ALREADY OVERBURDEN AND
OVERTAXED, AND WE NEED TO MAKE
SURE PROCESSES, THE STUDIES
WE'RE THINKING ABOUT HIT AT
THINGS THEY FEEL ARE IMPORTANT
AND THAT, YOU KNOW, ARE
STREAMLINED AS MUCH AS POSSIBLE
TO MAKE THEIR LIVES EASIER.
AT LEAST NOT TO ADD TO THEIR
VARIOUS DIFFERENT ACTIVITIES.
AND THEN MY LAST SLIDE.
WE'VE BEEN BUSY THIS PAST SPRING
TRYING TO DEVELOP THIS
COMMUNITY, HEAR FROM THE
COMMUNITY, GET THE FUNDING
OPPORTUNITY OUT SO WE CAN GET IT
LAUNCHED.
WE'RE HOPING TO DO NEGOTIATIONS
OVER THE NEXT MONTH OR SO WITH
THOSE THAT WE FEEL MAY BE
APPROPRIATE TO BRING INTO THIS
PROGRAM.
WE HAVE A BUDGET OF AROUND $5
MILLION FOR THIS YEAR, $30
MILLION IN TOTAL FOR THE TWO
YEARS, FISCAL YEAR 24 AND 25, WE
MAY HAVE SOME GENEROUS SUPPORT
FROM OTHER I.C. COLLEAGUES TO
EXPAND THAT OUT A LITTLE BIT
MORE BUT THAT'S WHAT WE'RE
COMMITTING TO NOW.
AGAIN, THE HOPE IS THAT WE CAN
CONTINUE TO BUILD THIS UP AND
RAMP UP OVER THE YEARS AND, YOU
KNOW, LEARN AS WE GO, SHOW
SUCCESS, AND IF WE WANT TO BE
BOLD AND TAKE A MULTI-YEAR
VISION ON THIS, I'D LIKE TO SEE
CREATION OF A WIDE NETWORK DOWN
THE ROAD.
WITH THAT I'LL TURN IT OVER --
>> I JUST WANT TO ADD A FEW
THINGS QUICKLY.
I WANT TO ACKNOWLEDGE DR. JON
LORSCH, WHO IS A DIRECTOR NIGMS,
AND HE'S BEEN COORDINATING
RUNNING, ORGANIZING THE IDeA
CTN, WHICH IS A BIG -- MAKING
THIS POSSIBLE FRANKLY, ALSO DR.
JONI RUTTER OF NCATS AND
CTSAs, ALSO PART OF THIS.
WE COULDN'T DO THIS EXPERIMENT
IF WE DIDN'T ALREADY HAVE THE
NETWORKS THAT THEY HAVE
DEVELOPED.
SO WHAT'S DIFFERENT ABOUT WHAT
THEY ARE ALREADY DOING, WHAT ARE
WE TRYING TO DO THAT'S DIFFERENT
HERE?
WE'VE THROUGH LISTENING TO LOTS
OF TALKING TO PEOPLE WE THINK
THESE COMMUNITIES THAT ARE
REALLY -- THAT REALLY HAVE POOR
HEALTH DON'T HAVE ONE HEALTH
PROBLEM; THEY HAVE MANY, MANY,
MANY.
SO, RIGHT AWAY, NOT ONE I.C. CAN
GO IN THERE AND GIVE THEM
EVERYTHING THEY NEED.
WE REALLY NEED ACROSS ALL OF NIH
EFFORT.
NUMBER ONE.
NUMBER TWO, THESE ARE
COMMUNITIES THERE'S NOT A LOT OF
SPECIALISTS.
SOMETIMES IT'S THE NURSE
PRACTITIONERS, SOMETIMES IT'S
EVEN JUST A PUBLIC HEALTH
WORKER, YOU KNOW, WHO IS REALLY
THERE IN THE COMMUNITY.
SO WE'RE LOOKING FOR THE KIND
OF -- TO INTEGRATE RESEARCH INTO
WHAT'S REALITY FOR THESE
COMMUNITIES.
NOT WHAT WE MAKE UP AND THINK
WILL WORK BUT WHAT'S REALITY
THERE.
AND THE WAY WE'RE GOING TO --
THE WAY WE'RE GOING TO LEARN IN
THIS TWO YEARS TO DO THAT IS
WE'RE GOING TO GET AS MANY
TRIALS AS WE'VE GOT, SUBSTANCE
ABUSE, YOU KNOW, MENTAL HEALTH,
DIABETES, HYPERTENSION, ALL
THESE -- OBESITY, ALL THE
PROBLEMS THAT WE THINK ARE
AFFECTING THESE COMMUNITIES,
MATERNAL HEALTH, ET CETERA, THAT
ARE APPROPRIATE FOR A PRIMARY
CARE ENVIRONMENT, CAN ALSO BE
JUST JOINING UP FOR "ALL OF US"
OR REALLY ANYTHING.
AND THEN WE GIVE THAT LIST TO
THOSE PROVIDERS AND THAT
COMMUNITY, AND SAY, WHAT OF THIS
KIND OF RESEARCH IS APPROPRIATE
FOR YOUR PATIENT POPULATION AND
YOUR SETTING?
AND THEY ARE GOING TO VOTE BY
WHAT THEY DECIDE TO PARTICIPATE
IN.
IT'S GOING TO BE VERY SIMPLE.
YOU KNOW, AND BY THE WAY, EACH
OF THESE STUDIES WILL COME WITH
ITS OWN SPECIFIC FUNDING.
SO IF IT'S SOMETHING JUST FILL
OUT A QUESTIONNAIRE, ONE LEVEL
OF FUNDING.
IF IT'S, YOU KNOW, SOME
PERINATAL CARE STUDY THAT HAS A
LOT OF INTERVENTION AND WHO
KNOW, HOUSE VISITS, THAT WOULD
COME WITH A MUCH HIGHER FUNDING
LEVEL.
AND WE WANT TO LEARN TWO THINGS
IN THIS NEXT TWO YEARS.
WE WANT TO LEARN WHAT THESE
COMMUNITIES VOTE -- YOU KNOW,
VOTE FOR BY WHAT THEY PICK AND
DECIDE TO DO, AND WE WANT TO
LEARN WHAT IT'S GOING TO TAKE TO
MAKE THEM SUCCESSFUL.
BECAUSE I DON'T THINK WE KNOW
ANY OF THIS, AND I CAN'T THINK
OF ANY WAY TO DO IT, OTHER THAN
JUST DOING A PILOT HERE, SEE
WHAT WE CAN DO.
THESE ARE EXISTING STUDIES, THEY
ARE ALREADY GOING IN OUR OTHER
I.C.s.
IT'S NOT GOING TO CRASH THIS
STUDY IF NOBODY PUTS A PATIENT
ON IT FROM THIS NEW INITIATIVE
BECAUSE IT'S STILL GOING ON IN
THE OTHER I.C.s.
BUT BY OFFERING IT HERE, WE'LL
BE ABLE TO USE THAT AS AN
OPPORTUNITY TO LEARN, AND THE
GOAL, THE GOAL IS REALLY TO KNOW
HOW TO PROPERLY RESOURCE THIS
KIND OF PRIMARY CARE COMMUNITY
WHICH IS TOUGH, WE ALL KNOW
THAT.
AND HOW TO PROVIDE THESE
COMMUNITIES WITH A SLATE OF
RESEARCH THAT ARE MEANINGFUL TO
THEM, THAT THEY CAN PICK.
I THINK WE CAN HOLD FOCUS
GROUPS, TILL THE COWS COME HOME
BUT WE'RE NOT GOING TO REALLY
UNDERSTAND WHAT'S GOING TO
MATTER TO THEM AND RESONATE WITH
THEM UNTIL WE TRY IT.
ANYWAY, THANKS TO YOU TWO AND
LOOK FORWARD TO QUESTIONS.
TARA, WHY DON'T YOU TAKE OVER
AGAIN.
>> I SEE LOTS OF HANDS.
I DON'T KNOW WHO IS FIRST.
>> I PUSHED THE BUZZER FIRST.
>> ALL RIGHT.
>> SO, FIRST OF ALL, I WANT TO
COMMEND YOUR BOLDS BOLDNESS AND
COURAGE, I'M A PRIMARY CARE DOC
WHO PRACTICES IN A FEDERALLY
QUALIFIED COMMUNITY HEALTH
CENTER, WHO IS ALSO PART OF OUR
CTSA WHO HAS BEEN PART OF PCORI
GRANTS, WHO NOW HAS A PROJECT IN
A SET OF RURAL PRIMARY CARE
CLINICS.
AND I CAN TELL YOU, YOU HAVE TO
BE READY TO FAIL FORWARD.
THE STRAIN ON NOT JUST THE
PROVIDER BUT THE CLINIC AND THE
NETWORK OF CLINICS IS
TREMENDOUS, PARTICULARLY COMING
OUT OF THE PANDEMIC, WHERE
THERE'S -- I MEAN WE FEEL LIKE
WE'RE OUT OF THE PANDEMIC BUT
THERE'S A LOT OF PENT-UP NEED.
THERE'S A LOT OF STRESSES ON
CLINICS.
THERE'S A LOT OF TURNOVER IN
THOSE CLINICS.
AND SO I THINK IT'S GREAT THAT
YOU'RE GOING TO WORK WITH FOLKS
ALREADY DOING THIS WORK BUT
REALIZE YOU'RE ALSO GETTING THE
HAVES AND NOT THE HAVE NOTES,
RIGHT?
YOU'RE BETTING PEOPLE THAT HAVE
ALREADY BEEN SUCCESSFUL IN
GETTING GRANTS, ENGAGING A
PRACTICE, THINKING ABOUT AND
PROPOSING A PROJECT THAT
PRACTICE HAS FIGURED OUT A WAY
TO MAKE IT WORK.
I WANT YOU TO LEVEL-SET FOR
THAT.
THE PRACTICE, NOT JUST THE
PROVIDER, IT'S GOING TO BE
IMPORTANT.
NOT JUST HOW DO YOU DECREASE THE
BARRIERS BUT HOW DO YOU
INCENTIVIZE THE WORK.
WHAT IS IT THAT'S IMPORTANT TO
THOSE PROVIDERS, TO THOSE
PATIENTS, THOSE SYSTEMS THAT
ALLOWS THEM TO SORT OF GET THE
FRICTION OUT OF THE WORK THEY
ARE ALREADY HAVING TO DO, QI
PROJECTS, ALL OF THE THINGS
THAT, YOU KNOW, THE WHEELCHAIR
THAT I GOT TO FIGURE OUT HOW TO
GET TO MY PATIENT WHO DOESN'T
HAVE A WAY TO PAY FOR IT, ALL
THESE THINGS THAT CREATE THE
FRICTION OF THE PRIMARY CARE I
HAVES IT THAT YOU'RE TRYING TO
INSERT YOUR SELF INTO.
I HAVE SO MANY NOTES.
THE OTHER THING TO THINK
ABOUT -- LISTEN, YOU KNOW HOW TO
REACH ME.
JUST DON'T REACH ME ON LIKE NEW
YEAR'S EVE.
THAT FOR ME, FQHCs I'VE BEEN
PRACTICING IN AND WORKING IN AS
A RESEARCHER, THESE ARE PARTS OF
A SYSTEMS OF CARE, THIS IS NOT
JUST THE PRIMARY CARE PRACTICE.
AND SO WE NEED TO ALSO BE
THINKING PARTICULARLY IF YOU'RE
HOPING TO ENGAGE PRACTICES THAT
ARE CARING FOR OUR MOST
VULNERABLE POPULATIONS, THAT
HAVE MULTIPLE COMORBIDITIES, I
CAN THINK OF THREE PATIENTS THAT
HAD ALL THE THINGS YOU JUST
LISTED, MONICA, TO THINK ABOUT
SYSTEMS OF CARE, HEALTH-RELATED
SOCIAL NEEDS BEYOND JUST WHAT'S
HAPPENING IN THE CLINIC AND HOW
DO WE ENGAGE THOSE SYSTEMS,
COMMUNITY-BASED, FAITH-BASED
ORGANIZATIONS PICKING UP THE
SLACK.
THE IDEA OF IRB AND
SELF-DETERMINATION SOME CLINICS
WILL TAP OUT, I CAN'T DO THIS,
WE ALREADY HAVE TOO MUCH GOING
ON.
YOU KNOW, WE'RE IN THE MIDST OF
A RENOVATION OR WHATEVER.
THINK ABOUT PRACTICE
FACILITATORS, BECAUSE THIS IS
GOING TO BE ON TOP OF WORK OTHER
PEOPLE ARE DOING.
HOW DOES THAT MAKE THAT HAPPEN?
ONE THING WE'RE FACING, IN
ADDITION TO ALL THE THINGS I'VE
TALKED ABOUT THAT WE'RE FACING
IN OUR OWN STUDY, IS CHANGES IN
THE ELECTRONIC MEDICAL RECORD
AND ELECTRONIC HEALTH RECORD.
THIS SORT OF GRAVITATION OR
MIGRATION TO THE MEAN, EVERYBODY
SEEMS TO BE MOVING TOWARDS EPIC
LITERALLY IN CLINIC FRIDAY MY
MEDICAL DIRECTOR SAID I'M
FRUSTRATED WITH MY EMR.
DON'T WORRY, WE'RE GOING TO EPIC
SOON.
OH MY GOD, I'M JUST NOW FIGURING
THIS OUT?
SO JUST REALIZE THAT IS PART OF
WHAT'S IN THE ECOSYSTEM FOR
PARTICULARLY FQHCs, I CAN'T
SPEAK TO OTHER PRIMARY CARE
PRACTICES.
AGAIN, REMEMBER WHAT YOU GET FOR
THE -- YOU'RE GETTING THE CREAM
OF THE CROP AND I KNOW BECAUSE I
HELPED WITH OUR PRACTICE-BASED
RESEARCH NETWORK AND THAT'S PART
OF OUR CTSA, THOSE PRACTICES
ACTUALLY ALREADY HAVE PROBABLY
15 YEARS WORTH OF TIME WORKING
TOGETHER WHICH IS GOING TO BE
DIFFERENT THAN WHAT I HOPE
YOU'RE GOING TO WANT LATER ON.
>> SO, THE OTHER THING I'LL ADD
TO WHAT YOU SAID IS THAT WE NEED
TO MAKE -- WE NEED TO
ACTUALLY -- BECAUSE THEY ARE
DOING RESEARCH, HAVE THESE
PRACTICES BE ACTUALLY BETTER,
BETTER FOR DOING THE RESEARCH.
THERE'S NOT ONLY BENEFIT -- OH,
YEAH, THE PRACTICES TRULY ARE
BETTER, GETTING MORE, ABLE TO DO
ROUTINE CARE, WHATEVER THAT
MEANS, IN THESE PRACTICES.
THERE IS NO ROUTINE CARE, I KNOW
THAT.
BUT BECAUSE WE'RE THERE, THEY
ARE DOING MUCH BETTER.
THAT'S GOT TO BE BUILT INTO THE
DESIGN OF THIS.
NOW YOU CAN SEE WHY WE'RE DOING
A PILOT.
>> I SEE YOUR HAND RAISED, I'M
SORRY.
WE'RE EARLY SO I HAVE MORE TIME
TO TALK.
I'M IN THE CLINIC, I WANT TO BE
THERE, BECAUSE I CARE ABOUT
THOSE PATIENTS.
I'M GOING TO NEED ANY RESEARCHER
THAT COMES IN, RIGHT, I WAS
CLEAR WITH OUR CLINIC DIRECTOR
AND CEO THAT WHEN I'M HERE, I'M
DOCK FOR FOR MY PATIENTS, NOT
RESEARCHER BECAUSE I WANT TO BE
HERE FOR THIS POPULATION.
ANY RESEARCHER COMING IN, EVEN
MY TEAM, I NEED THEM TO CARE AS
MUCH ABOUT THOSE PATIENTS AS I
DO.
>> ABSOLUTELY.
AGREED.
OKAY.
BRIAN -- KEEP GOING.
WHO IS NEXT?
WELL, WAIT.
BRIAN, YOU GO NEXT.
>> I'LL CO-SIGN ON EVERYTHING
GISELLE SAID.
PARTICULARLY THE POINT ABOUT
THE -- THE SYSTEMS ARE SO
STRESSED, IT'S NOT JUST
PROVIDERS AND, YOU KNOW, ONE OF
THE THINGS WE'VE LEARNED HAVING
JUST FINISHED UP COORDINATING
250 ENDING THE EPIDEMIC PROJECTS
FUNDED FOR FIVE YEARS ALL ABOUT
PARTNERSHIPS BETWEEN RESEARCH
ORGANIZATIONS, AND COMMUNITY
ORGANIZATIONS, IS THAT THAT
PARTNERSHIP FORMATION PART IS SO
IMPORTANT AND LIKE IF NOTHING
ELSE HAPPENS IN THE FIRST YEAR
BUT THAT RESEARCHER ACTUALLY
GETS TO BEGIN TO UNDERSTAND
LIVED REALITIES WHAT IT'S LIKE
WORKING IN CLINICS, STRAINS ON
CLINICS, SO RESEARCH QUESTIONS
ARE DESIGNED WITH AT LEAST A
LITTLE BIT OF A SENSE OF WHAT
THAT'S LIKE, IT'S JUST SO
IMPORTANT.
LIKE NOT RUSHING INTO THE FIRST
PROTOCOL.
NOW WE'RE READY TO GO, I THINK
JUST AGAIN LEVEL-SETTING THAT IF
YOU RUSH THAT PROCESS IT WILL
UNDERMINE THE NEXT STEPS.
THE OTHER THING I'M WONDERING
ABOUT THE POSSIBILITY OF
ENGAGING IMPLEMENTATION
SCIENTISTS IN THIS APPROACH.
SO LIKE IT SEEMS LIKE THIS IS SO
RIPE FOR IT, LIKE GISELLE'S
POINT ABOUT PRACTICE
FACILITATION.
RESEARCH NOW SHOWING IF YOU JUST
GIVE NUDGES TO EMR, YOU GET A
LITTLE BIT OF UPTAKE IN PRIMARY
CARE SETTINGS, IF YOU ADD
PRACTICE FACILITATION SOMETIMES
DOUBLES OR TRIPLES RESULTS.
DRAWING FROM IMPLEMENTATION
RESEARCH APPLIES TO CHANGE ABOUT
ENGAGING SCIENTIFICALLY, ALSO
THERE'S A LOT LEARNED THAT COULD
BE APPLIED BUT THERE'S ALSO A
LOT OF METHODS THAT ARE GOING TO
HAVE TO BE DRAWN FROM BECAUSE
THIS IS GOING TO BE NUTSY
COMPARED TO TRADITIONAL WAY
SCIENCE HAPPENS.
THERE'S GOING TO BE A LOT OF
CHANGE IN FLEXIBILITY.
IF YOU IMAGINE A CASE WITH A
PRACTICE FACILITATOR GOING TO
THE CLINIC TO HELP THEM
INTEGRATE THIS WORK IN THEIR
SYSTEM, UNDERSTAND THEIR SYSTEM,
EXPERT IN PRACTICE FACILITATION,
WE'LL SPEND SOME TIME AND THE
SOLUTION MAY LOOK DIFFERENT FROM
THIS CLINIC TO THAT CLINIC AND
DIFFERENT FROM TEN WEEKS LATER,
THE QUESTION OF HOW DO YOU TRACK
CHANGE IMPLEMENTATION
STRATEGIES.
WE WANT TO DRAW THOSE TOOLS IN,
HOW TO WE TRACK CHANGE IN
STRATEGIES OVER TIME.
SO, AGAIN, HAPPY TO ALSO HELP
AND PROVIDE TOOLS THAT HAVE BEEN
DEVELOPED IF USEFUL.
>> THANK YOU.
YES, GO AHEAD.
>> CHALLENGING TO CHANGE
BEHAVIOR ONCE IT'S SET, RIGHT?
HERE THERE'S AN OPPORTUNITY TO
TAP INTO THOSE WHOSE BEHAVIORS
TAKE SHAPE PARTICULARLY LOOKING
AT TRAINEES, THINKING ABOUT THE
PRESENT BUILDING THE FUTURE INTO
A PILOT LIKE THIS.
THINK ABOUT PRIMARY CARE
SPECIALTIES, PEDIATRICS,
PSYCHIATRY, A LOT OF OPPORTUNITY
TO TRAIN THE CHAMPIONS THAT
YOU'LL NEED DOWN THE LINE.
YOU CAN IMAGINE IT BEING SORT OF
THREE YEARS OF ONLINE MODULES
WHERE PEOPLE LEARN ABOUT WHAT
THE NIH IS DOING.
THEY LEARN ABOUT THE DIFFERENT
STUDIES ONGOING.
HOW TO INTEGRATE PRACTICE SO
WHEN DONE YOU HAVE COMMUNITY
HEALTH CHAMPION CERTIFICATE.
THAT'S SOMETHING FOR A RESIDENT
THAT'S ALL THE MOTIVATION TO ADD
TO YOUR C.V.
THINK ABOUT HOW TO BE STRATEGIC
IF YOU'RE SORT OF BUILDING THAT
FUTURE WORKFORCE, RELATIVELY LOW
COST, PICK TWO PEOPLE IN EVERY
STATE ALREADY IN A RURAL
COMMUNITY, RIGHT?
AS THEY ARE GOING THROUGH
MODULES YOU COULD USE THIS AS A
DATA COLLECTION INGEN, SO THERE
ARE WAYS OF INTEGRATING REALLY
LOW COST THINGS THAT ALSO TAKE
ADVANTAGE OF BUILDING TRAINING
SYSTEM THAT YOU'LL NEED FOR THE
FUTURE.
>> GREAT.
GREAT IDEA.
OKAY.
LET'S SEE.
UP TO GARTH AND WE'LL COME
AROUND THIS WAY.
>> WHAT DOES SUCCESS LOOK LIKE?
>> SUCCESS?
THE OUTLOOK FOR SUCCESS IS
DIFFERENT DEPENDING WHAT TIME
POINT WE'RE TALKING ABOUT.
SOME OF THE FOLKS HAVE ALREADY
TALKED ABOUT SOME THINGS WE
SHOULD KEEP IN MIND, YOU KNOW,
FOR THE FIRST YEAR OTHER TWO.
SUCCESS IN THE FIRST YEAR IS,
WELL, IN SOME WAYS I FEEL LIKE
WE'VE ALREADY BEEN SUCCESSFUL
BECAUSE WE LAUNCHED THE PROGRAM,
THAT WAS ONE SUCCESS WE WERE
AIMING FOR.
IN YEAR ONE GETTING THIS OFF THE
GROUND AND REALLY GETTING SOME
OF THOSE EXISTING STUDIES THAT
WE TALKED ABOUT UP AND RUNNING,
AND BEING ABLE TO PULL OUT SOME
OF THOSE LESSONS LEARNED, SO
THAT THEN FOR YEAR TWO THINKING
ABOUT BUILDING THE NEW STUDIES,
FOR THE NETWORK, THAT WE'RE ABLE
TO TAKE THOSE LESSONS LEARNED,
THINGS WE'VE PULLED OUT FROM
ACTUALLY BEING -- DOING THE WORK
AND BUILDING IT INTO THE SECOND
YEAR OF THE PILOT, THAT WOULD BE
THE SUCCESSES THAT I WOULD SAY
ARE THE VERY SHORT TERM.
THEY INDICATED IF WE WANTED TO
TAKE A VERY LONG-TERM VIEW I
THINK WE WANT TO SEE THIS PROVE
SUCCESSFUL AND GROW OUT TO BE
ABLE TO EXPAND OUT AND TO
NATIONWIDE NETWORK.
>> GARTH, SURGEONS HAVE TO BE
OPTIMISTS, I'LL SAY WHY ARE WE
DOING THIS?
BECAUSE SEGMENTS OF SOCIETY ARE
SUFFERING, AND THOSE ARE NOT THE
PLACES WHERE WE'RE DOING
RESEARCH.
AND WE'RE NEVER GOING TO SOLVE
THE PROBLEMS FOR APPALACHIA
UNLESS WE GET IN WITH OUR
RESEARCH.
I FEEL LIKE IT'S A MANDATE WE DO
THIS.
THE LONG-TERM SUCCESS WE START
SOLVING THE PROBLEMS FOR THESE
COMMUNITIES.
I MEAN, THAT'S THE WHOLE GOAL.
AND WE'LL KEEP PULLING PEOPLE
BACK.
IF AT THE END OF THE DAY WHAT
GETS BETTER MATERNAL HEALTH IS,
YOU KNOW, HEALTH WORKER THAT
GOES TO SOMEONE'S HOUSE AND
CHECKS THEIR BLOOD PRESSURE,
WHATEVER OUR RESEARCH TELLS US.
I BELIEVE IF WE GET THAT INTO
THE COMMUNITIES, AT LEAST START
INVESTIGATING WE CAN QUICKLY,
ESPECIALLY IF IT'S LIKE
IMPLEMENTATION TYPE WORK, WE CAN
HOPEFULLY START BENDING THE
NEEDLE EVEN RELATIVELY SOON, NOT
EVERYTHING BUT SOME THINGS.
SO THAT'S WHAT SUCCESS WOULD BE.
WE START SOLVING THESE PROBLEMS.
SO LET'S DO HOWARD.
OH, OKAY.
HOWARD --
>> THANK YOU.
THIS IS A REALLY IMPORTANT
EFFORT.
IT'S SO GREAT TO SEE THIS
HAPPENING, TO REACH UNDERSERVED
POPULATIONS.
MY QUESTION IS ABOUT, YOU
INDICATED THERE'S A DIFFERENCE
IN MAYBE NEGOTIATING AWARDS TO
BE MADE WITH INSTITUTIONS THAT
MAY NOT HAVE HAD A TRACK RECORD
OF DEALING WITH NIH FUNDING, I
WONDER MAYBE YOU CAN SAY MORE
ABOUT FEEDBACK, NOT FUNDED,
CRITIQUES, BECAUSE MAYBE THE
APPLICANTS ARE NOT USED TO
KNOWING NIH GRANTS IS LIKE A
PROCESS, YOU HAVE TO MAYBE GO
MORE THAN ONCE.
THIS MIGHT BE AN AREA TO ENSURE
CONTINUED ENGAGEMENT AND
IMPROVEMENT FOR IMPACT OF THESE
AWARDS.
>> THANKS, BUT AT LEAST IN THE
BEGINNING AS GISELLE IDENTIFIED
WE'RE GOING OFF OF
ALREADY-FUNDED NETWORKS SUCH AS
IDeA AND CTSAs TO GET
STARTED.
ONCE WE LEARN WHAT IT TAKES
THROUGH THOSE PARTNERS HOPEFULLY
FRANKLY WE'LL BE FUNDED
ADEQUATELY.
THAT'S WHAT IT'S GOING TO TAKE.
IT'S GOING TO TAKE REALLY GREAT
FUNDING AND THESE PROGRAMS.
TARA SAID WE WANT TO GO NARROW
AND DEEP AND NOT WIDE AND THIN.
WE REALLY HAVE TO THINK ABOUT
THAT.
>> THAT'S OUR HOPE ANYWAY.
YEAH, THAT'S PARTLY WHY, HOWARD,
WE'RE UTILIZING THE OTHER
TRANSACTION PIECE TOO.
THAT GIVES US FLEXIBILITY IN
THAT PROCESS AS WELL.
>> THAT MAKES SENSE.
>> SOLOMON?
ARE YOU NEXT?
>> OH, I WAS JUST PUTTING IN A
COMMENT.
I THINK IT'S REITERATING WHAT
YOU'RE HEARING FROM FOLKS WHO
WORK IN COMMUNITY, AND THE OTHER
CONCEPT THAT COMES UP IS TRUST.
IT'S A START FOR BUILDING TRUST
WITHIN THE COMMUNITY.
WORKING WITH THOSE GROUPS THAT
HAVE A TRUST RELATIONSHIP WITH
THEIR COMMUNITY IS A SMART MOVE,
IN TERMS OF SUCCESS AND MOVING
OUTWARD AND SEEING HOW DOES THIS
GROW OUT, IT'S ALSO ASKING THE
QUESTION FOR THOSE THAT SOMEONE
CALLED TO THE HAVE NOTs, WHAT
DOES IT TAKE FOR THE HAVE NOTs
TO BUILD CAPACITY TO BE ABLE TO
BE THE HAVEs, SO WHAT DO WE
SNEAD WHAT CAN NIH DO TO BUILD
THAT CAPACITY WITHIN THAT
PARTICULAR COMMUNITY?
AND I THINK YOU SAID, YOU KNOW,
AGAIN WE'RE STARTING TO SEE MORE
CAPACITY BUILDING OPPORTUNITIES
IN 2024, AN IMPORTANT PIECE OF
WHATEVER YOU'RE GOING TO DO.
>> THANK YOU.
DR. KIM AND THEN BACK TO YOU AND
WE'LL FINISH UP.
>> SUPER, THANKS.
MY COMMENTS COME FROM 20 YEARS
OF CLINICAL TRIALS, AND THE FOUR
REASONS THAT SITES DON'T PICK TO
PARTICIPATE, I IMAGINE YOU'LL BE
ASKING THIS AS YOU SORT OF GO
THROUGH YOUR MENU, FASCINATING
TO THROW STUFF ON THE WALL AND
SEE WHAT GETS PEOPLE ENGAGED BUT
IT'S EITHER BECAUSE IT'S TOO
MUCH UPFRONT WORK FOR TOO FEW
PATIENTS, DOESN'T SEEM WORTH IT,
THIS IS AN OPPORTUNITY TO BE
RADICAL HOW DO WE TRAIN PEOPLE
IN GCP IF THEY ARE NOT ALREADY,
MEANING IRB PAPERWORK, HOW DO WE
EXPECT -- EXPEDITE GRANTS.
THE AMOUNT OF COMPENSATION FOR
PATIENTS AND PATIENT STIPEDDENS
ARE UNDERRESOURCED, A PLACE NOT
TO SHIRK.
THIRD THEY DON'T HAVE ENOUGH
PATIENTS.
WE'VE TALKED ABOUT HOW TO
NETWORK AROUND THAT.
FOURTH WE TALKED ABOUT ON THE
BREAK, IT'S JUST TOO COMPLICATED
A STUDY.
AS YOU PICK YOUR STUDIES, IF YOU
DON'T GET A LOT OF RAISED HANDS
TO BE INTROSPECTIVE WHICH ONES
ARE WE PUTTING IN THE FIELD AND
I WOULD LOOK AT REAL WORLD
EVIDENCE STUDIES PEOPLE ARE
STARTING TO DO, EVEN IN THE
U.K., RIGHT?
ALL THE DOCS ARE PARTICIPATING
IN THEIR DATABASE MANAGEMENT.
AND IT'S BECAUSE IT'S IN THEIR
WORKFLOW AND DOESN'T REALLY ADD.
>> YEP.
>> ONE LAST THING YOU MIGHT BE
ABLE TO LEVER IS THINK ABOUT
PLACES WHERE TOP HEALTH
MANAGEMENT HAS BECOME MORE
PREVALENT BECAUSE YOU CAN GIVE A
SITE A TWO-FER AND SAY I'M
ENROLLING YOU IN A DIABETES
PROGRAM AND YOU'RE GOING TO USE
VALUE PROPOSITION FROM CMS ON
GETTING HEMOGLOBIN AC 1 DOWN,
YOU HAVE A DOUBLE WIN.
IF THE FORCE APPROACH DOESN'T
WORK THOSE MAY BE THINGS CAN YOU
THINK ABOUT REDESIGN OF WHICH
STUDIES YOU'RE PUTTING OUT THERE
TO BE MORE VALUE ADDED.
>> GREAT.
>> THANK YOU VERY MUCH.
THIS IS EXTREMELY EXCITING.
YOU CAN TELL BY ALL OF US, VERY
ENGAGED.
IT'S KIND OF REMINDED ME, I
DON'T KNOW IF LARRY REMEMBERS
THIS, LATE 1980s, I'M SHOWING
MY AGE.
THERE WAS NIH ESTABLISHED THE
COMMUNITY PROGRAM, CLINICAL
RESEARCH ON AIDS, I WAS ONE OF
THE HAVE-NOT SITES.
HARLEM HOSPITAL.
THE IDEA HOW DO YOU GET RESEARCH
INTO THE COMMUNITY AWAY FROM
MAJOR MEDICAL CENTERS, TRULY THE
HAVE NOTs, I'VE NEVER HAD AN
NIH GRANT BEFORE THIS EVER IN MY
LIFE.
SO WERE ALL THE OTHER P.I.s AS
WELL.
AND I THINK THE BEGINNING, IT'S
INTERESTING THE APPROACH YOU'RE
TAKING IS FASCINATING BECAUSE
YOU'RE STARTING WITH THE
HAVEs, NOT THE HAVE NOTs,
AND THERE ARE ADVANTAGES BUT
THERE MIGHT BE DISADVANTAGES.
I THINK WHAT I'VE LEARNED, AND
WE'VE WRITTEN IT SOME THERE, A
FEW THINGS, I THINK THE STUDIES,
IT'S ALMOST THEY HAVE TO THINK
OF COMPLETELY DIFFERENT TYPE OF
STUDIES.
RATHER THAN TRADITIONAL STUDIES.
AND WHAT WE HAVE TO DO IS REALLY
BUILD, TOOK MONTHS AND MONTHS F
NOT YEARS TO BUILD, GET TRUST IN
THE COMMUNITY, GET THEM TO TELL
US THE QUESTIONS THEY HAD IN
MIND AND THEN DESIGNED THE
RIGOROUS BUT SIMPLE STUDIES AND
I FEEL LIKE THAT'S OUR
TRADITIONAL NIH STUDIES ARE
RIGOROUS BUT NOT SIMPLE. AND
THERE'S A TEMPTATION BY
RESEARCHERS IF THEY DESIGN THE
STUDIES TO PUT IN BELLS AND
WHISTLES WHICH MAKE IT DIFFICULT
FOR SITES TO BE ABLE TO
PARTICIPATE IN.
SO I DO THINK THINKING CAREFULLY
ABOUT THE EFFORT, WHAT IS THE
QUESTION WE'RE TRYING TO ANSWER
AND JUST FOCUS ON THAT AND AVOID
BELLS AND WHISTLES AS WE SAY
BECAUSE THAT OFTEN IS WHAT WILL
NOT MAKE IT HAPPEN.
I DO THINK, YOU KNOW, THE
SUCCESS, I FEEL LIKE WHAT WE
EXPERIENCE BY 15 YEARS OF DOING
THIS IS QUALITY OF CARE
IMPROVED.
THAT'S A WONDERFUL -- NOT JUST
RESEARCH WAS HIGH QUALITY BUT
QUALITY OF CARE IN THE COMMUNITY
ITSELF, IMPROVED SUBSTANTIALLY.
IT'S A WONDERFUL METRIC OF
SUCCESS THAT YOU'RE ELEVATING
THE QUALITATIVE CARE FOR
EVERYBODY, NOT JUST PARTICIPANTS
IN THE STUDY BUT EVERYBODY ELSE.
AND TRYING NOT TO HAVE THE
PARTICIPANTS IN THE RESEARCH
GETTING THAT CADILLAC VERSION,
THE OTHER PEOPLE GETTING THE
TOYOTA VERSION, WHATEVER THE
RIGHT -- BUT ANYWAY TO MAKE SURE
THAT THERE'S IN THE CLINICS THAT
DOESN'T BECOME THIS SEPARATION,
THE RESEARCH PARTICIPANT AND
NON-PARTICIPANT SO I THINK
THAT'S IMPORTANT.
THE OTHER THING WHICH WAS
WONDERFUL WAS THE CAPACITY IN
HAVING THE STAFF LEARN HOW TO DO
RESEARCH.
I FEEL LIKE INVESTMENTS IN A LOT
OF TRAINING AND MENTORSHIP
ESPECIALLY, AND PEOPLE ACQUIRING
THESE NEW SKILLS, ENORMOUS
EXCITEMENT ACQUIRING NEW SKILLS
AND THINKING OF THEMSELVES NOW,
THIS APPLIES TO NURSES, SOCIAL
WORKERS, CLERK IN THE CLINIC,
ACROSS THE BOARD.
I THOUGHT THAT WAS ALSO VERY,
VERY INTERESTING.
AND THEN, YOU KNOW, THE OTHER
WAS THE -- IS HAVING THE SITES
KIND OF HAVE AN IDENTITY
TOGETHER, BUILDING A NETWORK.
THAT BECAME A WONDERFUL IDENTITY
THAT WE HAD, AS, YOU KNOW, SORT
OF THE RENEGADES IN A WAY BUT
PEOPLE AT THE FRONTIER TRYING TO
BREAK NEW GROUND.
I THINK YOU'RE ESTABLISHING ALSO
COMMUNITY OF INDIVIDUALS WHO ARE
GOING TO FEEL THEY ARE DOING
SOMETHING, LIKE MONICA SAID,
COMPLETELY REVOLUTIONARY AND
MAKING A DIFFERENCE IN PEOPLE'S
LIVES, SO THERE ARE LOTS OF
LESSONS LEARNED FROM THIS
EXPERIENCE AND I'M SURE IN THE
NIH THERE'S A LOT OF WONDERFUL
EXPERIENCES.
I'M VERY EXCITEED ABOUT THIS
INITIATIVE.
>> THANK YOU.
>> THREE POINT.
THE INTENT IS GOOD.
I'M NOT GOING TO QUESTION THAT.
THE RIGHT THING TO DO.
THE FIRST POINT, I AGREE WITH
DR. CORBY, YOU'RE THREADING A
NEEDLE.
RURAL, UNDERSERVED, NO TRACK
RECORD, CAN RESPOND IN SIX
WEEKS.
>> WE DIDN'T SAY NO TRACK
RECORD.
WE SAID ALREADY ESTABLISHED
NETWORK SITES.
>> WITH EXISTING TRIAL.
>> WITH AN EXISTING TRIAL
NETWORKS ALREADY WORKING THROUGH
TWO DIFFERENT PROGRAMS.
>> A PILOT AT LEAST.
>> YEAH.
>> THE SECOND POINT THOUGH I
WANT TO MAKE IS THAT IS THERE A
DANGER OF CREATING ANOTHER
INFRASTRUCTURE SEPARATE FROM
PCORI AND IDeA.
>> NO.
>> NO?
>> THEY WILL BE INTEGRATED.
THEY WILL BE INTEGRATED.
>> THEY ARE NOT EVEN INTEGRATED
WITH EACH OTHER NOW.
>> THEY WILL NOT BE DUPLICATES.
>> OKAY.
THIRD POINT, AS AN APPLICANT,
IT'S VERY FRUSTRATING WHEN SHORT
TRIGGER OTR COMES OUT RIGHT
BEFORE SUMMER, IF I HEARD YOU
CORRECTLY, 500 FOLKS ON A ZOOM
FOR A COUPLE MILLION DOLLARS, IS
WHAT YOU'RE SAYING?
>> NOT FOR THE ROA SPECIFICALLY
BUT TO HEAR ABOUT THE NETWORK WE
WERE ABLE TO DISCUSS WITH THE
COMMUNITY.
>> JUST WORRIED ABOUT BUILDING
MORE FRUSTRATION THAN HOPE OUT
OF THIS ONE RIGHT NOW.
>> YEAH, WE'RE TRYING TO
LEVEL-SET EXPECT AGENTS.
THAT'S WHY YOU HEAR US SAY OVER
AND OVER AGAIN, THIS IS A PILOT.
WE'RE TRYING TO SMART SMALL.
WE RECOGNIZE WE'RE NOT ABLE TO
DO EVERYTHING FOR EVERYONE ALL
AT ONCE.
>> IT'S THE RIGHT THING TO DO
THOUGH, DESPITE THE COMMENTS.
>> THANK YOU.
YES.
>> I AGREE COMPLETELY.
THE EXPERIENCE WE'VE HAD, IT'S
BRINGING UP A NEW SITE, THAT
DOESN'T DO RESEARCH TO NETWORK,
DOES REQUIRE ALMOST LIKE A
MENTORSHIP RELATIONSHIP, SO
CONSIDERING FUNDING, HAVE IT'S
AND HAVE NOTs, SO THE SUCCESS
BOTH ARE AFTER CERTAIN TIMES
SERVING THE POPULATION YOU WANT
TO SERVE.
>> YES, VERY GOOD.
THAT'S THE LAST W0RD.
WE HAVE TO MOVE ALONG.
TARA, YOU AGAIN.
YAY!
INVESTIGATION OF CO-OCCURRING
CONDITIONS ACROSS THE LIFESPAN
TO UNDERSTAND DOWN SYNDROME,
PROJECT UPDATE, DR. BIANCHI IS
ALSO HERE.
THANK YOU.
>> I'LL WAIT WHILE THEY ARE
GETTING SLIDES LOADED.
IT'S ME AGAIN, THIS IS THE LAST
TIME YOU'LL HEAR FROM ME, TODAY
ANYWAY.
I'D LIKE TO TALK ABOUT AND
PROVIDE HISTORY AROUND ONE OF
THE EFFORTS THAT WE'RE PROUD OF
AT NIH, WHICH IS THE INCLUDE
PROJECT, INVESTIGATION OF
CO-OCCURRING CONDITIONS ACROSS
THE LIFESPAN TO UNDERSTAND DOWN
SYNDROME.
OKAY, GREAT.
SO, JUST WANTED TO AGAIN -- NIH
FORMED THE DOWN SYNDROME WORKING
GROUP IN 2005 TO HELP COORDINATE
ALL OF THESE EFFORTS AROUND DOWN
SYNDROME ACROSS NIH CO-CHAIRED
BY NICHD AND INVOLVED ABOUT TEN
OR SO OTHER INSTITUTES, CENTERS,
O.D. OFFICES.
AGAIN, THEY WERE DEVELOPING A
RESEARCH PLAN, FOCUSED ON TOPICS
OF COGNITION AND DEMENTIA WITHIN
DOWN SYNDROME COMMUNITY.
AND THIS WAS IN RESPONSE TO
VARIOUS CONGRESSIONAL EFFORTS AS
WELL.
BUT I THINK THERE WAS TRUE NEED
FOR THIS ACROSS THE ECOSYSTEM,
AND THAT'S PARTLY WHY YOU SEE
THE GALVANIZING OF NUMEROUS
INSTITUTES AND CENTERS ACROSS
NIH IN THIS SPACE.
SO AS WE ADVANCE DOWN THE YEARS,
2011, THE DOWN SYNDROME
CONSORTIUM WAS CREATED, AS A
SORT OF MORE ESTABLISHED AND
STRUCTURED COLLABORATIVE
APPROACH, BROUGHT TOGETHER
VARIOUS PARTNERS WHETHER THEY BE
VARIOUS INSTITUTES AND CENTERS,
DIFFERENT PROFESSIONAL
ORGANIZATIONS, ADVOCACY GROUPS,
FOUNDATIONS, AND OF COURSE ONE
THING THAT IS CRITICAL TO
"INCLUDE" BUT ALSO THE DOWN
SYNDROME EFFORTS THAT HAVE BEEN
ONGOING AT NIH FOR SOME TIME,
INCLUDING SELF-ADVOCATES AS PART
OF THE PROCESS.
AND PROVIDED CRITICAL INPUT INTO
THE DOWN SYNDROME RESEARCH PLAN
THAT'S BEEN DEVELOPED OVER THE
YEARS AS WELL AS DATA REGISTRIES
THAT EXIST.
EXCITINGLY IN 2018 CONGRESS
ESTABLISHED "INCLUDE" AND
PROVIDED RESOURCES TO SUPPORT
THIS EFFORT.
THIS IS REALLY FOCUSED IN
PARTICULAR ON CO-OCCURRING
CONDITIONS, THAT AFFECT
INDIVIDUALS WITH DOWN SYNDROME.
OVER THE YEARS WE HAVE RELEASED
RESEARCH PLANS ON DOWN SYNDROME,
YOU CAN SEE THE COVER PAGES HERE
AS WE'VE MOVED ALONG.
AND THE MOST RECENT PLAN, WHICH
IS ON THE RIGHT OF THE SCREEN,
PUBLISHED IN 2022, REFLECTS FIVE
BROAD THEMES THAT ARE ORGANIZED
INTO DIFFERENT GOALS AND
OBJECTIVES FOR DOWN SYNDROME
RESEARCH INCLUDING THINGS LIKE
FOCUSING ON THE BASIC RESEARCH,
BASIC AND FUNDAMENTAL UNDERSTAND
OF DOWN SYNDROME, COHORT
DEVELOPMENT, EPIDEMIOLOGY, THIRD
IS CLINICAL RESEARCH AND
CO-OCCURRING CONDITIONS.
FOURTH IS LIVING WITH AND AGING
WITH DOWN SYNDROME, SERVICES TO
SUPPORT THAT RESEARCH,
PARTICULARLY AS WE SEE THE
POPULATION LIFESPAN INCREASED,
AND LESS SEVERAL DECADES, PEOPLE
ARE LIVING LONGER LIVES
DEVELOPING THINGS LIKE
ALZHEIMER'S DISEASE AND THEN
PROVIDING RESEARCH
INFRASTRUCTURE AND TOOLS FOR THE
COMMUNITY.
AND SINCE ESTABLISHMENT OF
"INCLUDE," THE RESEARCH
COMMUNITY HAS MADE A GREAT DEAL
OF SUCCESS AND PROGRESS TOWARDS
UNDERSTANDING MANY OF THOSE
CO-OCCURRING CONDITIONS THAT
IMPACT THE HEALTH AND LIVES AND
WELL-BEING OF PEOPLE WITH DOWN
SYNDROME.
DIANA IS GOING TO TALK ABOUT
SOME EXCITING OUTCOMES IN
RESEARCH THAT IS CURRENTLY BEING
SUPPORTED THROUGH "INCLUDE."
SO I'LL LEAVE HER TO HAVE THE
FUN AND EXCITING TOPIC OF
TALKING ABOUT THE SCIENCE, BUT,
YOU KNOW, WE HAVE BROUGHT
TOGETHER THE INVESTIGATORS, WE
DID SO RECENTLY BACK IN APRIL,
BROUGHT TOGETHER 250 RESEARCHERS
ON THE CAMPUS TO TALK ABOUT
RESEARCH THAT THEY ARE DOING,
HELP FOSTER AND BUILD
COLLABORATION, AND TO TALK ABOUT
THE FUTURE RESEARCH DIRECTIONS
FOR DOWN SYNDROME RESEARCH.
AND IT WAS A REALLY GREAT
MEETING.
I WAS ABLE TO ATTEND BITS AND
PARTS BUT WHAT I SAW WAS
IMPRESSIVE.
AND REALLY GOT THE COMMUNITY TO
THINK FORWARD LOOKING ON THE
AREAS OF FOCUS FOR RESEARCH
MOVING FORWARD.
WE HAD A TREMENDOUS OUTPOURING
OF PEOPLE THAT █WERE INTERESTED
IN HAVING POSTERS AT THE EVENT,
ALMOST 70 POSTERS WERE
DISPLAYED, IMPORTANTLY WE HAD
ALMOST 30 SPEAKERS, INCLUDING
THREE SELF-ADVOCATES AND THOSE
PRESENTATIONS AND CONVERSATIONS
OF DIALOGUE THEY PARTICIPATED IN
WERE REALLY INSPIRING, AND ONE
OF THE ADVOCATES WHO
PARTICIPATED IN THE EVENT, DAVID
EGAN, WHO IS A WELL-KNOWN DOWN
SYNDROME RESEARCH ADVOCATE, HE
INVITED THE COMMUNITY TO THINK
ABOUT, YOU KNOW, JUST HOW BEING
HEALTHY IS A GOAL FOR EVERY
PERSON, ON THIS EARTH, INCLUDING
INDIVIDUALS WITH DOWN SYNDROME.
I THINK THAT REALLY ENCOMPASSES
THE MISSION OF AND WHAT DRIVES
"INCLUDE" AND THIS PROGRAM, YOU
KNOW, IN THE PAST AND AS WE
THINK ABOUT MOVING FORWARD.
SO WITH THAT I'M GOING TO TURN
IT OVER TO DR. BIANCHI TO TALK A
LITTLE BIT ABOUT SOME OF THE
SUCCESSES THAT HAVE COME OUT OF
THIS PROGRAM.
>> THANK YOU, TARA.
I KNOW IT'S BEEN A LONG DAY.
DO YOU NEED TO GET UP AND
STRETCH?
MY JOB IS TO MAKE YOU EXCITED
ABOUT WHAT WE'RE LEARNING ABOUT
THE "INCLUDE" INITIATIVE AS THE
PRIMARY CARE NETWORK, A GREAT
STORY IF YOU INFUSE MONEY INTO A
FIELD YOU CHANGE THE LIVES OF
DOWN SYNDROME BUT YOU'RE
LEARNING THINGS ABOUT CONDITIONS
PEOPLE WHO DON'T HAVE DOWN
SYNDROME ALSO HAVE SUCH AS
ALZHEIMER'S DISEASE.
SO, YOU MAY NOT BE A MEDICAL
GENETICIST AS I AM BUT I KNOW
THAT DR. KIMBALL IS GOING TO BE
VERY INTERESTED IN SOME OF THE
CLINICAL TRIALS THAT ARE BEING
DONE TO TREAT ALOPECIA ARIATA,
APPARENTLY MORE COMMON IN PEOPLE
WITH DOWN SYNDROME THAN PEOPLE
WHO DON'T HAVE DOWN SYNDROME.
I BEG YOU TO STAY AWAKE AND
HOPEFULLY I'LL KNOW HOW TO
ADVANCE THE SLIDES.
IT'S A LONG DAY.
I'M GOING TO FOCUS ON THE
ACCOMPLISHMENTS OF "INCLUDE" IN
THE LAST SIX YEARS.
BY THE WAY, DAVID EGAN IS NOT
JUST A RESEARCH ADVOCATE, HE'S A
SELF-ADVOCATE, CONTRIBUTING TO
RESEARCH SINCE HE WAS BORN.
HIS MOTHER WAS A Ph.D.
CANDIDATE, AT THE WEIZMANN
INSTITUTE, UNIVERSITY OF
WISCONSIN, HIS FAMILY HAS BEEN
INCREDIBLE, PARTICIPATING AT ALL
STAGES OF HIS LIFE.
I'M GOING TO TALK ABOUT WHAT
WE'RE DOING IN "INCLUDE," AND
THESE SLIDES WERE MADE A FEW
WEEKS AGO AND JUST LAST WEEK I
WAS PARTICIPATING IN THE TRISOMY
21 RESEARCH MEETINGS IN ROME,
AND AT THOSE MEETINGS PROBABLY
75% OF THE PEOPLE WHO WERE
PRESENTING HAD "INCLUDE"
FUNDING.
AND YOU COULD REALLY SEE THE
DIFFERENCE THAT THAT HAS MADE IN
THE LAST, AGAIN, SIX YEARS.
SO I'M GOING TO PICK OUT A
COUPLE ADVANCES IN BASIC
SCIENCE.
THE COHORT DEVELOPMENT, WE HAVE
13 ONGOING CLINICAL TRIALS,
FOCUS ON SHARED DATA RESOURCE,
AND HOW WE'RE INCREASING THE
WORKFORCE OF PEOPLE WORKING ON
DOWN SYNDROME.
MOST OF YOU KNOW THAT DOWN
SYNDROME IS THE MOST COMMON AUTO
SOMAL ANEUPLOIDY IN LIVE BORN
INFANTS, 1 IN 700 BIRTHS, AND
BECAUSE OF ADVANCES IN GENERAL
HEALTH AND SURGERY, FOR EXAMPLE,
50% OF INFANTS HAVE CONGENITAL
HEART DEFECTS, LIFESPAN HAS
DOUBLED.
PEOPLE WITH DOWN SYNDROME ARE
PROTECTED FROM SOME CONDITIONS
LIKE SOLID TUMORS, BUT VIRTUALLY
100% OF THEM GET ALZHEIMER'S
DISEASE.
SO THAT POPULATION RECOMMENDS AN
IMPORTANT COHORT WHO CAN TEACH
US ABOUT ALZHEIMER'S DISEASE,
ALSO ALLOW US TO SEE EFFECTS OF
THERAPY.
THEY RARELY GET MYOCARDIAL
INFARCTION AND WE DON'T KNOW
WHY.
THIS IS ANOTHER ADULT
SELF-ADVOCATE, MR. FRANK
STEPHENS WHO MEMORABLY SAID
WHILE TESTIFYING AT LABOR HHS
SUBCOMMITTEE HEARING, I'M A MAN
WITH DOWN SYNDROME, AND MY LIFE
HAS BEEN WORTH LIVING.
HE GAVE A SPEECH.
IT RESULTED IN A STANDING
OVATION.
IT'S EXTREMELY RARE TO HAVE A
STANDING OVATION FROM THE LABOR
HHS SUBCOMMITTEE.
THAT WAS THE BEGINNING OF
INFUSION OF FUNDS.
HE'S A TERRIFIC PERSON.
WE'VE MET HIM SEVERAL TIMES.
THE SELF-ADVOCATES ARE TRULY
AMAZING.
SO, ONCE -- THAT WAS IN 2017.
WE REALIZE WE WERE GOING TO GET
MONEY IN FISCAL YEAR 2018.
AND I REMEMBER A VERY INTENSE
WEEKEND WHERE WE SAID, OKAY,
WE'RE GOING TO GET MONEY, HOW
ARE WE GOING TO DO THIS?
AND WE KNEW THERE WERE BASIC
SCIENCE ADVANCES THAT NEEDED TO
BE MADE IN THE FIELD, THAT WOULD
BE RELATED TO THE FACT THAT NOT
ONLY ARE THERE THREE COPIES OF
GENES ON CHROMOSOME 21 AND
PEOPLE WITH DOWN SYNDROME BUT
THERE ARE DOWNSTREAM EFFECTS, A
LOT OF DYSREGULATED GENE
EXPRESSION IN DOWN SYNDROME.
A LOT OF SMALL STUDIES TOO.
WE NEEDED A WAY TO DEVELOP LARGE
COHORTS SO WE COULD DO BIG DATA
ANALYSES AND SO THAT WAS
COMPONENT 2, COHORT DEVELOPMENT.
AND THEN WE WANTED TO CHANGE THE
CULTURE, PEOPLE WITH GENETIC
CONDITIONS ARE ALMOST ALWAYS
EXCLUDED FROM CLINICAL TRIALS.
HERE THE NAME "INCLUDE."
A PUN, WE WANTED THEM TO BE
INCLUDED IN CLINICAL TRIALS.
AND AS DR. BERTAGNOLLI SAYS WE
WANT -- OUR WORK ISN'T DONE
UNTIL THE HEALTH OF ALL PEOPLE
IS IMPROVED.
AND THE OTHER THING I WANT TO
MENTION IS I'M OFTEN ASKED, YOU
KNOW, DOES DOWN SYNDROME OCCUR
EQUALLY IN ALL RACES?
ABSOLUTELY IT DOES.
THE REASON YOU DON'T NECESSARILY
SEE PEOPLE OF COLOR WITH DOWN
SYNDROME IS THEY DON'T GET
ACCESS TO CARE.
SO, YOU'LL SEE THIS IS A MAJOR
GOAL OF "INCLUDE" AS WELL.
SO WE'RE INVESTIGATING
CONDITIONS THAT BOTH AFFECT
PEOPLE WITH DOWN SYNDROME, AND
POTENTIALLY ARE PROTECTED IN
PEOPLE WITH DOWN SYNDROME, WE'RE
INCREASING THE WORKFORCE, AND WE
WANT TO ENGAGE PEOPLE WITH DOWN
SYNDROME AND THEIR FAMILY WHO
HAVE DIVERSE BACKGROUNDS TO
PARTICIPATE IN RESEARCH.
HERE IS THE EFFECT OF FUNDING.
THIS IS AMAZING.
FROM 2018
$60 MILLION, THEY DIDN'T CUT
ANYTHING LAST YEAR.
MAJORITY OF FUNDS SUPPORT BASIC
AND HIGH RISK DISCOVERY RESEARCH
STUDIES BUT ALSO INCREASED
CLINICAL TRIALS.
I'M GOING TO GIVE A COUPLE
EXAMPLES FROM EACH OF THE
COMPONENTS, AND I'LL GO INTO
DETAIL IN THE NEXT ONE.
IN BASIC SCIENCE, WE NOW KNOW
FOR SURE THAT THE SMALL CHANGES
THAT, DYSREGULATION OF
TRIPLICATIVE AND DOWNSTREAM HAVE
CUMULATIVE EFFECT, A VERY
COMPLEX DISORDER.
THERE'S BEEN A TREMENDOUS AMOUNT
OF ADVANCES IN CONGENITAL HEART
DISEASE.
AT THE MEETINGS THAT I ATTENDED
LAST WEEK IN ROME THERE WAS A
SESSION ON THE HEART, AND HERE'S
WHAT FUNDING DOES.
IT BRINGS IN RESEARCHERS FROM
OTHER FIELDS.
SO THERE WERE CARDIOLOGISTS
THERE WHO HAD NEVER WORKED ON
ANYTHING RELATED TO DOWN
SYNDROME.
IN FACT, WE'RE DOING CLINICAL
TRIALS IN MICE BUT SHOWING THAT
IF YOU INHIBITED DIRK 1-A ON
CHROMOSOME 2 IS PRESENT IN THREE
COPIES, YOU COULD RESCUE
CONGENITAL HEART DISEASE.
VERY, VERY EXCITING WORK.
NOT EVEN PUBLISHED YET.
WE'RE ALSO -- WE HAVE A NUMBER
OF LARGE COHORTS, PARTICULARLY
IN THE OLDER AGE PEOPLE WITH
DOWN SYNDROME, AND THEY ARE
VOLUNTEERING FOR STUDIES TO
IDENTIFY BIOMARKERS OF
NEURODEGENERATION.
SO THAT'S ALSO BEEN VERY, VERY
SUCCESSFUL.
THE BASIC SCIENCE COMPONENT ONE
OF THE FUNDED INVESTIGATORS IS
USING A 3D BIOPRINTING MODEL OF
HUMAN NEURAL TISSUES WITH
FUNCTIONAL CONNECTIVITY.
THIS INVESTIGATOR HAS BEEN DOING
IT IN ANOTHER GENETIC DISEASE,
ALEXANDER DISEASE, USING THIS 3D
PRINTING.
THE SLIDES ARE NOT AS COOL AS
JOHN NGAI'S WORK BUT THEY ARE
COOL.
THEY ARE USING BIOPRINTING MODEL
TO BE ABLE TO TEST DIFFERENT
DRUGS AND ALSO TO MODEL
PATHOLOGY IN DOWN SYNDROME.
HERE'S A BIG ADVANCE.
DOWN SYNDROME IS NOW BEING
THOUGHT OF AS AN
INTERFERONOPATHY.
WHY?
BECAUSE FOUR COPIES OF THE
INTERFERON GENES, FOUR OF THE
SIX, ARE ON CHROMOSOME 21.
SO, THE TREATMENT STRATEGIES ARE
NOW BEING DIRECTED TOWARDS
ADDRESSING AUTOIMMUNE DISORDERS.
SO, THIS IS ONE OF THE BASIC
SCIENCE STUDIES THAT BASICALLY
SHOWED BY MEASURING CYTOKINES,
DOCUMENTING, DESCRIBING DOWN
SYNDROME WITH INTERFERONOPATHY
BUT WE KNOW THAT BECAUSE OF THE
CONDITIONS THAT THEY GET.
YOU'LL SEE WHEN WE GET TO THE
CLINICAL TRIALS WHAT THEY ARE
DOING.
SO IN TERMS OF COHORTS, AGAIN,
PUTTING TOGETHER THE LARGE
POPULATIONS OF PEOPLE WITH DOWN
SYNDROME, THERE'S THE
ALZHEIMER'S BIOMARKER
CONSORTIUM, DOWN SYNDROME, ABCDF
STUDY, WHICH HAS 92
INVESTIGATORS, OVER 19
INSTITUTIONS.
THEY ARE, AGAIN, AS I ALREADY
SAID IDENTIFYING BIOMARKERS AND
HAVE A COHORT OF 600 ADULTS.
ADULTS WITH DOWN SYNDROME ARE A
MAJOR CONCERN NOW BECAUSE PEOPLE
ARE LIVING LONGER, BUT THEY ALSO
HAVE ALZHEIMER'S DISEASE.
SO THERE ARE MULTIPLE NEEDS
RELATED TO CARE AND IN SOME
CASES BECAUSE PARENTS HAVE BEEN
OLDER WHEN THEY HAD THE CHILD
WITH DOWN SYNDROME, THERE ARE
CONCERNS AS TO WHO IS GOING TO
BE TAKING CARE OF THESE PEOPLE.
SO, BECAUSE THE POPULATION HAS A
VIRTUALLY 100% PENETRANCE OF
DEVELOPING ALZHEIMER'S DISEASE,
THEY ARE PARTICIPATING IN
RESEARCH TO LOOK AT NEUROIMAGING
MARKERS AS WELL AS BLOOD-BASED
BIOMARKERS.
THEY ARE CO-ENROLLING THESE
SUBJECTS IN THE TRIAL READY
COHORT DOWN SYNDROME GROUP THAT
WILL BE RECRUITING FOR VARIOUS
MEDICATION TRIALS.
SO, THERE'S GOING TO BE A NEW
COHORT GROUP THAT WILL BE USED
FOR COMPREHENSIVE DEEP
PHENOTYPING, AND BIOSAMPLE
ACQUISITION.
AND AGAIN THESE MAY NOT BE AS
OLD AS THE ALZHEIMER'S GROUP,
THESE ARE PEOPLE OF ALL AGES.
IN TERMS OF CLINICAL TRIALS
PEOPLE WITH DOWN SYNDROME HAD
MORE COMPLICATIONS WITH
COVID-19, PARTLY BECAUSE OF
THEIR DYSREGULATED IMMUNE
SYSTEM.
SO THERE'S A LOT OF INFORMATION
THAT WAS GAINED FROM THAT, AS
WELL AS SPECIFIC TREATMENTS FOR
PEOPLE WITH DOWN SYNDROME WHO
HAD COVID-19.
IT MAY SEEM TRIVIAL BUT IT WAS
IMPORTANT FOR PEOPLE WHO COULD
NOT COMMUNICATE WHEN THEY
COULDN'T SEE, THEY NEEDED
GLASSES, THIS WAS -- YOU KNOW,
IT'S SOMETHING THAT'S VERY
PRACTICAL BUT IMPROVES THE LIVES
OF PEOPLE WITH DOWN SYNDROME.
SO THAT TRIAL WAS COMPLETED.
THERE HAVE ALSO BEEN NEW
COGNITIVE MEASURES THAT HAVE
BEEN DESIGNED AND TESTED, SO
PARTICULARLY IN NEURODEVELOPMENT
TO UNDERSTAND WHERE PARTICULAR
CHILD IS ALONG A SPECTRUM.
AND MANY OF THE TOOLS THAT HAVE
BEEN DEVELOPED HAVE ALSO BEEN
TRANSLATED INTO SPANISH.
SO, THESE ARE THE 13 CLINICAL
TRIALS.
AND PARTICULARLY FOR DR. KIMBALL
I WANT TO POINT OUT THAT JAK
INHIBITION IS ONGOING BUT
SUCCESSFUL.
PEOPLE WITH DOWN SYNDROME HAVE
INCREASED INCIDENCE OF ALOPECIA
ARIATA, PSORIASIS, AND SOME OF
THESE PATCHES OF BALDING,
AMAZING PICTURES, SO THIS IS
VERY CONCRETE AS WELL AS
TREATMENTS, CLINICAL TRIALS,
ADDRESSING SLEEP APNEA.
SO, BECAUSE PEOPLE WITH DOWN
SYNDROME HAVE A RELATIVELY FLAT
FACE, THEY HAVE TONGUE
PROTRUSION, THAT CREATES HYPOXIA
AND HAS NEGATIVE EFFECTS ON
THEIR DEVELOPMENT.
YOU CAN SEE HOW MANY CLINICAL
TRIALS THERE HAVE BEEN TO
ADDRESS THIS ISSUE.
WE MENTIONED ALZHEIMER'S
DISEASE, AND ANOTHER BIG PROBLEM
IS REGRESSION, SO PEOPLE WITH
DOWN SYNDROME WILL DEVELOP, A
CERTAIN PERCENTAGE WILL REGRESS
AFTER THEY HAVE ACHIEVED CERTAIN
PLATEAU IN DEVELOPMENT, SO
THAT'S ALSO BEING ADDRESSED WITH
THIS.
I MENTIONED THE JAK INHIBITORS,
THERE ARE ALSO MEDICAL
TREATMENTS, TAMOXATI NEXT, OXY
BUTIN, PROMISING FOR CHILDREN
WITH DOWN SYNDROME IN RANDOMIZED
TRIAL, RESEARCH PRESENTS
MEANINGFUL INSIGHTS INTO
PROGRESSION OF ALZHEIMER'S
DISEASE IN THIS POPULATION.
KIDS WITH DOWN SYNDROME, I KNOW
PEOPLE I KNOW THAT HAD SLEEP
APNEA TESTS IN THE HOSPITAL,
THEY REALLY DON'T LIKE IT.
YOU CAN'T SLEEP BECAUSE IT'S A
FOREIGN SETTING.
YOU CAN IMAGINE A CHILD WITH AN
INTELLECTUAL DISABILITY, IT'S
EVEN WORSE TO TRY TO BRING THEM
INTO THE HOSPITAL.
SO THERE HAVE BEEN STUDIES NOW
VIA "INCLUDE" TO SEE, YOU KNOW,
HOW IS GOOD HOME TESTING FOR
SLEEP APNEA.
IN FACT IT WORKS JUST AS WELL.
SO, THIS IS A MAJOR ADVANCE
BECAUSE NOT ONLY CAN CHILDREN
AND ADULTS WITH DOWN SYNDROME BE
TESTED FOR OBSTRUCTIVE SLEEP
APNEA BUT WE CAN MONITOR EFFECTS
OF TREATMENT.
SO THIS IS ALL -- IT'S A SMALL
STUDY BUT HAD SIGNIFICANT
RESULTS.
AND THEN DATA RESOURCES, SO
AGAIN THE SMALL INDIVIDUAL
TRIALS THAT HAVE BEEN DONE
HISTORICALLY HAVE NOT HAD THE
POWER OF PUTTING TOGETHER THESE
COHORTS.
SO FROM THE VERY BEGINNING, WITH
THE CREATION OF THE DATA
COORDINATING CENTER, THE INTENT
WAS TO PUT ALL THE DATA IN ONE
PLACE AND MAKE EVERYTHING
PUBLICLY AVAILABLE SO THAT
ANYBODY INTERESTED IN ANYTHING
RELATED TO DOWN SYNDROME COULD
ACCESS THE DATA AND MAKE
MEANINGFUL INSIGHTS FROM THERE.
AGAIN, IT'S PUBLICLY AVAILABLE.
SO IT'S THE INCLUDEDCC.ORG.
MY LABORATORY IS WORKING TO
IMPROVE COGNITION IN DOWN
SYNDROME.
I SAID THIS IS GREAT FOR HUMANS
BUT IT'S A BIG ISSUE FOR MOUSE
MODELS.
THERE ARE HUNDREDS OF MOUSE
MODELS, DOWN SYNDROME.
AND WE HAVE A HARD TIME
COMPARING THEM TO EACH OTHER.
AND I WANTED TO SEE SOMETHING
THAT, YOU KNOW, IF YOU'RE
STUDYING AMYLOID PRECURSOR
PROTEIN, FOR EXAMPLE, NOT ALL
THE MODELS HAVE APP.
IS THERE A WAY TO QUICKLY FIND
OUT IS IT TRIPLICATED OR HOW
DOES IT COMPARE OR IS A
PARTICULAR GENE EXPRESSED, I'M
HAPPY TO SAY IN ROME THEY HAD A
BETA VERSION OF THE SOFTWARE,
AND WE WERE ALL ENCOURAGED TO
PLAY WITH IT AND MAKE COMMENTS,
AND I THINK IT'S GOING TO BE A
GREAT ADVANCE AND A GREAT
ADDITION TO THE DATA
COORDINATING CENTER.
SO, AGAIN, THERE ARE -- WE'RE
NOT TALKING ABOUT 40 OR 50
INDIVIDUALS.
WE'VE GOT 4,000+ GENOMES, 1700+
TRANSCRIPT OPENS, PROTEOMES,
EPIGENOMES, IMMUNE MAPS,
MICROBIOMES, SO THE MONEY HAS
BEEN WELL SPENT.
NOW, FAMILIES ARE VERY INVOLVED
IN DOWN SYNDROME.
SO DAVID EGAN, HIS MOTHER
KATHLEEN SERVED ON OUR ADVISORY
COUNCIL.
AT EVERY DOWN SYNDROME MEETING,
PARENTS ARE ACTIVELY INVOLVED.
AND THE DS CONNECT IS AN
OPPORTUNITY FOR BOTH PEOPLE WITH
DOWN SYNDROME AND THEIR FAMILIES
TO PARTICIPATE DIRECTLY IN
RESEARCH.
SO IT'S A WAY OF DOING
SURVEY-BASED RESEARCH, AND
REACHING OVER 5,000 PEOPLE WITH
DOWN SYNDROME.
SO THERE HAVE BEEN SOME VERY
INTERESTING QUESTIONS.
I KNOW THERE'S AT LEAST ONE
PUBLICATION IN THE PEDIATRIC
LITERATURE WHERE PARENTS WERE
ASKED WHAT KIND OF
NUTRICEUTICALS OR VITAMINS OR
SUPPLEMENTS ARE YOU GIVING YOUR
CHILD, AND IT WAS RATHER EYE
OPENING.
THE DS-CONNECT WAS ON A
CONTRACT, NOW MOVING TO A NEW
PLATFORM TO BE MORE SUSTAINABLE
AT THE UNIVERSITY OF COLORADO.
ANYBODY CAN REGISTER WITH A
RESEARCH QUESTION.
AND IT'S VERY EASY TO USE.
AND THEN IN TERMS OF THE
WORKFORCE, MORE THAN 76 TRAINEES
HAVE BENEFITED, PEOPLE ARE
FUNDED VIA T32, KL-2 SCHOLARS,
CARDIOLOGY IS GETTING INVOLVED
IN THE DOWN SYNDROME RESEARCH SO
PEDIATRIC HEART NETWORK FELLOW,
INDIVIDUAL K08 AND Q 23 AND DS3
DATA SCIENCE SCHOLARS PROGRAM
FOR PEOPLE OF DIVERSE
BACKGROUNDS WHO ARE ENTERING
INTO RESEARCH CAREERS IN DOWN
SYNDROME.
THEY GO TO COLORADO FOR TWO
WEEKS FOR SUMMER IN-PERSON
COURSE, AND THEY ARE LEARNING
HOW TO MANAGE THESE LARGE
DATASETS.
AND THESE KIDS WERE AT THE ROME
MEETING, AND THEY HAVE THEIR OWN
NETWORKING NOW, WHICH IS REALLY
EXCITING.
AND THEY HAVE REALLY BENEFITED
NOT ONLY FROM THE DIDACTICS AND
DATASETS BUT ALSO BE AWARE OF
THE FUTURE OF RESEARCH IN DOWN
SYNDROME.
THEY HAVE HAD 36 TRAINEES, AND
THEY HAVE A NEW GROUP COMING IN
NEXT SUMMER.
SO I'VE TALKED FAST BECAUSE I
KNOW IT'S LATE IN THE DAY AND
YOU PROBABLY WANT TO GET SOME
FRESH AIR.
BUT WE HAVE 18 OF OUR INSTITUTES
AND CENTERS AT NIH COLLABORATING
IN THE "INCLUDE" INITIATIVE, 50
FUNDING OPPORTUNITIES TO DATE, I
MENTIONED 13 CLINICAL TRIALS.
THERE'S DATA COORDINATING CENTER
FOR BOTH HUMANS AND RODENT
MODELS.
MAINLY MICE RIGHT NOW, NO RATS
YET.
76 NEW TRAINEES, AND 13
"INCLUDE" HOSTED COMMUNITY
ENGAGEMENT AND OUTREACH EFFORTS.
WE HAVE A MAJOR OUTREACH EFFORT
TO PEOPLE WHO ARE PRIMARILY
SPANISH SPEAKING.
AND OVER 450 PUBLICATIONS.
I THINK, AGAIN, IT'S AN EXAMPLE
OF A PROGRAM THAT WITH AN
INFUSION OF MONEY HAS BEEN VERY
SUCCESSFUL AND HAS REALLY TURNED
THE FIELD AROUND.
SO, WE HOPE THAT CONGRESS WILL
CONTINUE TO SUPPORT IT AND I'M
HAPPY TO TAKE ANY QUESTIONS.
THANK YOU.
>> GREAT.
THANK YOU, DIANA.
QUESTIONS?
YES.
>> I'M EXCITED ABOUT YOUR STUDY
>> ONE PERSON EXCITED.
>> I'LL TALK TO YOU OFFLINE.
>> DOESN'T GET BETTER THAN THAT.
OKAY.
>> SEAN HAS BEEN VERY PATIENT.
DR. SEAN MOONEY, NEW DIRECTOR AT
CIT WHO WITH DR. TABAK WANTS TO
PRESENT A PROPOSAL FOR YOU ALL.
>> SEAN, LET ME SAY A COUPLE
WORDS BEFORE YOU START.
FOR NEW MEMBERS OF THE ACD, ONE
OF THE REALLY -- THINGS YOU WILL
ENJOY IS PARTICIPATING IN
WORKING GROUPS.
BECAUSE A LOT OF THE ACTION IS
DONE SORT OF OFFLINE.
AND SEAN IS GOING TO PROPOSE A
WORKING GROUP FOR THE CENTER FOR
INFORMATION TECHNOLOGY AND HE
WILL EXPLAIN WHY, AND AT THE
VERY END I'LL JUST OFFER A BRIEF
CHARGE FOR YOU TO CONSIDER.
TYPICALLY ONE OR TWO MEMBERS OF
ACD CO-CHAIR A WORKING GROUP
WITH EITHER SOMEBODY FROM OFFICE
OF DIRECTOR OR INSTITUTE OR
CENTER DIRECTOR, AND THEN THE
REMAINDER OF THE COMMITTEE COMES
FROM PEOPLE WHO ARE NOT MEMBERS
OF THE ACD BUT COME ON AS AD HOC
INDIVIDUALS WHO HAVE SPECIAL
EXPERTISE, SO SEAN, PLEASE.
>> THANK YOU SO MUCH, LARRY.
I REALLY APPRECIATE THE
OPPORTUNITY TO SPEND TIME WITH
YOU TODAY, LOOKING FORWARD
HOPEFULLY TO WORKING WITH YOU IN
THE FUTURE.
I'M SEAN MOONEY, NEW DIRECTOR OF
THE CENTER FOR INFORMATION
TECHNOLOGY AT NIH.
I'M JUST PASSING ABOUT 2 1/2
MONTHS HERE.
OVER THE FIRST 2 1/2 MONTHS I'VE
HAD JUST AN ENORMOUS AMOUNT OF
FUN MEETING ALL OF THE REALLY
AWESOME HARD WORK THAT'S
HAPPENING WITHIN THE CENTER FOR
INFORMATION TECHNOLOGY THAT
SUPPORT COMMUTING -- COMPUTING
AT THE NIH.
I'M GOING TO TELL BUT SOME WORK
THAT WE DO OVER THE NEXT 20
MINUTES, OPPORTUNITIES COMING
UP, SOME THINGS THAT WE'RE
GENERALLY THINKING ABOUT.
THE KEY MESSAGE THAT I WANT TO
SEND TO YOU TODAY IS I NEED YOUR
HELP.
COMPUTING IS PART OF EVERYTHING
WE DO NOW.
AND WHAT I'M GOING TO DESCRIBE
IS THE GROWTH OF COMPUTING TO
SUPPORT THE KINDS OF PROJECTS
THAT WE WANT TO DO IN THE
FUTURE, NEEDS YOUR ADVICE.
CIT IS ONE OF THE 27 INSTITUTES
AND CENTERS OF THE NIH, ONE OF
THE FEW, MAYBE THE ONLY THAT
DOESN'T HAVE AN EXTERNAL ADVICE
TOOL TO GIVE US ADVICE BACK TO
US, I'M REALLY HOPING THAT WE
CAN LEVERAGE THIS TO DO EXACTLY
THAT.
SO EARLIER TODAY WE HEARD ABOUT
A PROJECT THAT THE BRAIN
INITIATIVE IS GOING TO BE
GENERATING, IMAGINE GENERATING A
ZETABYTE OF DATA IN A SINGLE
PROJECT.
A ZETABYTE, STAGGERING IN THE
TERMS OF WHAT WE NEED TO DO TO
THE PREPARE IN THE COMPUTING
WORLD.
WHAT I'LL DO IS START BY GIVING
INTRODUCTION INTO CIT AND NIH,
TALK ABOUT THE NEED FOR GUIDANCE
ON INFORMATION TECHNOLOGY, I'M
GOING TO CALL CYBER
INFRASTRUCTURE AND CYBERSECURITY
AND WE'LL TALK AT THE VERY END
ABOUT THE PROPOSED WORK GROUP
LOGISTICS.
AS I SAID BEFORE, ALL OF THE
BIOMEDICAL RESEARCH LIFE CYCLE
CONTAINS DATA, COMPUTERS,
SOFTWARE, ANALYTICS, HOW THEY
ARE ALL CONNECTED TOGETHER.
WE HAVE AN AMAZING WORKFORCE AT
THE NIH THAT CONTRIBUTES TO
SUPPORT COMPUTING, AND WE REALLY
HAVE THIS OPEN QUESTION OF HOW
DO WE CONTINUE TO SUSTAIN BEING
VERY ADVANCED IN TERMS OF
CULTIVATING THAT TECHNOLOGY THAT
WE PROVIDE, BUT ALSO HOW DO WE
MAINTAIN A CAPABLE WORKFORCE
THAT CAN DO THIS, OVER THE LONG
HAUL, AND REALLY SUPPORT THE
FUTURE ADVANCEMENTS THAT WE
EXPECT TO SEE IN COMPUTING SUCH
AS NEXT GENERATION, ADVANCED
ARTIFICIAL INTELLIGENCE
COMPUTING PLATFORMS AND THINGS
LIKE THAT.
WE DO HAVE A ROAD MAP TO START
WITH.
MY PREDECESSOR AND THE FORMER
DIRECTOR OF THE NATIONAL LIBRARY
OF MEDICINE PATTI BRENNAN AND
ANDREA NORRIS, MY PREDECESSOR,
WORKED TOGETHER TO DEVELOP A
STRATEGIC KIND OF VISIONARY
ROADMAP FOR DIGITAL NIH FUTURE
WHICH OPERATES FROM ABOUT 2023
TO 2028.
THAT DOCUMENT IS AVAILABLE.
YOU CAN GOOGLE AND DOWNLOAD IT,
AND REALLY IT'S A GREAT STARTING
POINT FOR INFORMATION TECHNOLOGY
AND HOW WE WANT TO MOVE FORWARD.
LET ME GIVE YOU SOME BACKGROUND,
IT'S GOING TO BE A 30-SECOND
OVERVIEW OF A VERY LONG
DOCUMENT.
THE WAY THEY FORMED DIGITAL NIH
FRAMEWORK, FORMULATED THE
FRAMEWORK, WAS ACROSS FOUR
ENTITIES, WITHIN THE NIH.
EXTRAMURAL PROGRAM, INTRAMURAL
BASIC RESEARCH, INTRAMURAL
CLINICAL RESEARCH, AND
ADMINISTRATION AND MANAGEMENT OF
THE NIH.
WITHIN THAT THEY HAD FIVE
RECOMMENDATIONS, FIRST THEY
PROPOSED THAT WE SHOULD HAVE A
COMMON ARCHITECTURE WITH
WELL-DEFINED STANDARDS IN TERMS
OF COMPUTING AND COMPUTING
RESOURCES.
CUTTING EDGE STORAGE, ANALYTICS,
COMPUTATIONAL INFRASTRUCTURE.
THEY PROPOSED WE HAVE INCREASED
COMPUTATIONALLY TECHNICALLY
COMPETENT WORKFORCE, AND I THINK
THAT FLUENCY IS SOMETHING I TALK
ABOUT A LOT, NOT ONLY THE
COMPUTATIONAL, TECHNOLOGY
WORKFORCE BUT ALSO THE
NON-TECHNOLOGY SCIENTIFIC
WORKFORCE SHOULD BE VERY FLUENT
IN CAPABILITIES OF INFORMATION
TECHNOLOGY AND THINGS WE'RE
TALKING ABOUT TODAY SO WE CAN
MAKE GOOD BUSINESS DECISIONS
ABOUT WHAT'S POSSIBLE IN THE
FUTURE.
POST-PANDEMIC A LOT OF
INDIVIDUALS WORK FROM A LOT OF
DIFFERENT PLACES, AS WE ALL
KNOW.
AND SUPPORTING THAT
WORK-ANYWHERE, ANYTIME PLACE THE
FUTURE IS REALLY IMPORTANT
BECAUSE IT SAYS -- SPEAKS TO
MORE COLLABORATION TOOLS, MORE
VIRTUALIZATION TOOLS, THINGS
LIKE THAT.
AND FINALLY WE NEED TO SUPPORT
STRONG AND ROBUST CYBERSECURITY
TO ENABLE OR RESEARCH TO HAPPEN
AS WE WOULD LIKE TO SEE IT
HAPPEN.
WE SUPPORT CLOUD TECHNOLOGIES,
SUPPORT HIGH PERFORMANCE
COMPUTING, SUPPORT A NUMBER OF
RESEARCH AND BUSINESS
APPLICATIONS FOR THE NIH.
WE SUPPORT RESEARCH COMPUTING
GENERALLY.
WE SUPPORT IDENTITY AND ACCESS
MANAGEMENT, IDENTITIES AND
ACCESS TO SYSTEMS FOR NIH
EMPLOYEES AS WELL AS FOR
EXTRAMURAL INVESTIGATORS.
WE SUPPORT A BROAD
ENTERPRISE-WIDE NETWORK THAT
I'LL TALK ABOUT IN A SECOND.
AND WE SUPPORT A NUMBER OF
COMPONENTS OF WHAT I LIKE TO
CALL CYBER INFRASTRUCTURE,
THAT'S HOW RESEARCH TECHNOLOGIES
INTEROPERATE AND WORK TOGETHER
IN THE INTERNET.
ACROSS THE INTERNET.
WE SUPPORT COLLABORATION TOOLS,
E-MAIL, ZOOM, MICROSOFT TEAMS,
THOSE SORTS OF THINGS.
AND FINALLY WE SUPPORT ROBUST
CYBERSECURITY TO PROTECT THE
WORK WE DO.
ONE OF THE THINGS WE HEAR ABOUT,
THESE WILL BE OVER THE NEXT
COUPLE SLIDES, SNAPSHOTS WHEN WE
THINK ABOUT WHAT OUR ROADMAP
MIGHT BE IS FIRST OF ALL YOU'VE
HEARD TODAY PROBABLY ABOUT FAIR
DATA.
WE HEARD ABOUT IT IN A COUPLE
TALKS THAT I'VE BEEN HERE IN THE
SECOND HALF OF THE DAY.
UNDERNEATH THERE, THE CONCEPT OF
BUILDING DATA RESOURCES,
ENABLING DATA SHARING, THERE ARE
LOTS OF COMPONENTS OF TECHNOLOGY
OF COMPUTERS WORKING TOGETHER TO
BE ABLE TO ENABLE DATA TO BE
MORE AVAILABLE, ACCESSIBLE,
INTRAOPERABLE, FINDABLE.
AND WE NEED TO THINK ABOUT LIKE
WHAT ARE THOSE COMPONENTS WE
SHOULD GO AFTER AS AN ENTERPRISE
AND WHAT ARE THE COMPONENTS THAT
MAYBE WE SHOULD NOT GO AFTER,
THIS IS AN AREA WE REALLY NEED
SOME ADVICE ON.
FURTHER, WE'D LIKE TO THINK OF
THE INDIVIDUAL COMPUTATIONAL
TOOLS LIKE MODULAR PLASTIC PLAY
BLOCKS THAT ALL FIT TOGETHER,
IT'S THE SCIENTISTS THAT BRING
TOGETHER THOSE BLOCKS, PUTS THEM
TOGETHER IN THE RIGHT WAY TO DO
THE RESEARCH THEY WANT TO DO.
WE LIKE TO THINK ABOUT THE
BLOCKS, WHAT MIGHT THOSE BLOCKS
BE, HOW MIGHT WE BUILD THEM, HOW
MIGHT WE PROVIDE THEM, AND WHAT
ARE THE GOOD AREAS FOR US TO GO
AFTER.
AND HOW DO WE SEE THE EVOLVING
NATURE OF SCIENCE IN TERMS OF
NEW TECHNOLOGIES THAT COME DOWN
THE PIKE, NEW OMICS
TECHNOLOGIES, NEW
HIGH-THROUGHPUT SINGLE CELL
ANALYSIS, GENERATES LOTS OF DATA
AND NEEDS WORKFLOWS FOR DOING
THAT ANALYSIS.
THERE'S THINGS LIKE SPECIALIZED
COMPUTING HARDWARE, GPUs, VERY
HIGHLY IN DEMAND, HARD TO GET
HOLD OF.
QUANTUM COMPUTING IS SOMETHING
THERE'S A LOT OF INTEREST IN
DOING INVESTIGATIONS AROUND, AND
THEN OF COURSE ADVANCED A.I.
METHODS SO WELL ADOPTED OVER THE
FIRST COUPLE OF YEARS THEY HAVE
BEEN AVAILABLE.
WE NEED MORE INTELLIGENCE
INVESTMENTS, STANDARDS FOR THOSE
PLATFORMS, HOW DO WE MAKE
COMPUTERS WORK TOGETHER TO
PROVIDE -- ENABLE RESEARCHERS TO
DO WHAT THEY WANT TO DO.
WE NEED TO THINK HOW DO WE
PROVIDE THESE NEXT GENERATION
A.I. PLATFORMS TO ACCESS --
POTENTIALLY CONTROLLED ACCESS
DATA, BUILD WALLED GARDENS SO
INVESTIGATORS CAN WORK IN THOSE
ENVIRONMENTS AND DO THINGS
WITHOUT WORRYING THEIR DATA IS
GOING SOMEPLACE IT SHOULDN'T BE
GOING.
WE NEED TO BALANCE INNOVATION,
INTEROPERABILITY, CYBERSECURITY.
FINALLY EFFICIENCY IS A
CHALLENGE THAT WE ALL FACE.
WE HAVE A LOT OF SILOS, FRANKLY,
WITHIN THE RESEARCHER COMMUNITY,
AND I THINK THERE ARE LOTS OF
OPPORTUNITIES TO BE MORE
EFFICIENT WHILE STILL ENABLING
RESEARCHERS TO DO WHAT THEY WANT
TO DO.
AND BE SUCCESSFUL AT IT.
FINALLY, SOMETHING WE THINK A
LOT ABOUT IS IMPROVING I.T.
GOVERNANCE, HOW WE THINK ABOUT
HOW WE MAKE INVESTMENTS IN I.T.
AND I.T. PLATFORMS, ET CETERA,
THIS TALK TO THIS GROUP IS ONE
OF THOSE FIRST KEY COMPONENTS,
IN TERMS OF TRYING TO GET
OUTSIDE ADVICE IN TERMS OF WHAT
WE DO AND HOW WE DO IT.
I'M GOING TO BRIEFLY MENTION
SECURITY, THERE'S A BALANCE
BETWEEN ENABLING OUR MISSION,
AND RESTRICTING BASED ON THE
NEEDS OF SECURITY.
THIS IS ANOTHER AREA THAT WOULD
BE WORTH POTENTIALLY TALKING
ABOUT.
ALSO, HERE ON CAMPUS, THERE'S A
LOT OF OPPORTUNITIES FOR
CLINICAL RESEARCH.
IMPROVING THE ENTERPRISE OF
CLINICAL RESEARCH.
MANY I.C.s DO CLINICAL TRIALS
ON CAMPUS.
THERE'S A NUMBER OF DATA
RESOURCES, LOTS OF OPPORTUNITIES
FOR DATA GOVERNANCE, AND
BUILDING BETTER ACCESS TO DO
BETTER RESEARCH ON THAT DATA,
IMPROVING A.I. AND DATA SCIENCE
CAPABILITIES PLATFORMS HERE ON
CAMPUS, AS WELL AS POTENTIALLY
EVEN TRANSLATING THE RESEARCH
BACK INTO THE EHR HERE AT THE
CLINICAL CENTER OR WITH
AFFILIATE HEALTH SYSTEMS THAT WE
MAY BE PARTNERING WITH.
FOR EXAMPLE, THERE ARE MANY
REDCap INSTANCES ACROSS
CAMPUS, THESE ARE PIECES OF
SOFTWARE THAT ARE SCALABLE AND
WE HAVE LOTS OF DUPLICATION.
THIS MIGHT BE AN OPPORTUNITY TO
THINK ABOUT HARMONIZATION.
WE ARE VERY LITTLE CLINICAL
TRIAL MANAGEMENT ARCHITECTURE
HERE ACROSS THE I.C.s.
SOME HAVE INVESTED MORE THAN
OTHERS BUT THERE'S OPPORTUNITIES
TO THINK ABOUT CLINICAL TRIALS,
THINK ABOUT HOW WE IDENTIFY
ELIGIBLE PATIENTS, HOW DO WE
IMPROVE ENTERPRISE DATA SYSTEMS
AND I'VE ALREADY MENTIONED
INTEGRATION OF RESEARCH BACK.
LET ME TELL YOU ABOUT CIT TODAY
AND SOME SUCCESSES WE'VE DONE,
IS THIS THE RIGHT GROUP TO DOING
THIS SORT OF THING?
WE RUN A NETWORK NOW AN
ENTERPRISE NETWORK.
IT IS INCREDIBLY -- IT'S PRETTY
INCREDIBLE SHOP.
4300 MILES OF NETWORK, 30,000
CONNECTIONS EVERY DAY, SPANS A
NUMBER OF SITES, FROM LIKE THE
WIRELESS ACCESS POINTS IN THE
BUILDINGS TO LARGE
PROVIDER-GRADE ROUTERS THAT
SUPPORT LARGE AMOUNTS OF TRAFFIC
THAT WE USE TO SUPPORT THE NIH'S
MISSION.
WE ALSO SUPPORT ALL THE
COLLABORATION TOOLS THAT HAVE
GROWN OVER A PARTICULARLY DURING
THE PANDEMIC AND POST-PANDEMIC,
ZOOM/WEBEX TEAM INSTANCES
INITIATED MORE THAN 2.5 MILLION
MEETINGS LAST YEAR TO SUPPORT
THAT MISSION.
MORE THAN 100 MILLION GIGABYTES,
SORRY, ONE MILLION GIGABYTES IN
ONE DRIVE AND SHARE POINT.
WE ALSO SUPPORT HIGH PERFORMANCE
COMPUTER, 100,000 PROCESSORS,
IT'S AGING.
WE NEED A STRATEGY FOR THIS.
THAT SAID, THE NUMBER OF USERS
IN IT CONTINUES TO GROW EVERY
YEAR.
THE NUMBER OF PUBLICATIONS THAT
COME FROM IT GROW EVERY YEAR.
LAST YEAR THERE WAS 600 PAPERS.
AND THE NUMBER OF CPU HOURS
EVERY YEAR GREW UNTIL IT BECAME
SATURATED AND NOW IT'S GENERALLY
SATURATED ALL THE TIME.
FURTHER YOU MAY ALSO BE AWARE OF
THE STRIDES INITIATIVE AND THE
CLOUD WHICH SUPPORTS DISCOUNTED
ACCESS TO CLOUD COMPUTING
ENVIRONMENTS, A PARTNERSHIP WITH
THREE CLOUD VENDORS.
AND THERE ARE A LOT OF TYPES OF
DATA THAT ARE SUPPORTED, THIS
DATA IS A LITTLE BIT OUT OF DATE
BUT THERE ARE 300 MILLION
GIGABYTES OF DATA CURRENTLY IN
STRIDES, AND MORE THAN 2,000
RESEARCH PROGRAMS SUPPORTED BY
IT.
SO WE NEED TO THINK ABOUT THE
FUTURE.
WE NEED TO THINK ABOUT
BIOMEDICAL SCIENCE.
WE SPEND A LOT OF RESOURCES ON
DUPLICATE PLATFORMS NATIONALLY.
WE KNOW THIS.
IT'S VERY EXPENSIVE.
OFTENTIMES IT'S NOT
INTEROPERABLE EVEN THOUGH LOTS
OF OUR PARTS OF OR OUR STRATEGC
PLAN WANT TO BRING
INTEROPERABILITY, I DON'T THINK
IT'S SUSTAINABLE DUE TO GROWTH
OF I.T., DATA RESOURCE, A.I.
I DON'T THINK -- I DO WANT TO
SAY I DON'T THINK HAVING A
SINGLE PLATFORM TO SOLVE EVERY
PROBLEM IS REALISTIC, THAT'S NOT
GOING TO HAPPEN.
BUT I THINK WE CAN THINK ABOUT
WHAT TOOLS MIGHT BE THAT WE
MIGHT BE ABLE TO PROVIDE TO MAKE
IT EASIER FOR RESEARCHERS TO DO
WHAT THEY DO AND MAKE IT MORE
EFFICIENT FOR US TO DELIVER WHAT
WE NEED TO DO COMPUTATIONALLY.
I THINK ABOUT INFRASTRUCTURE A
LOT.
CYBER INFRASTRUCTURE SHOULD BE
MODULAR AND OPEN, LIKE TOY
BLOCKS.
SO INVESTIGATORS OUT IN
INTRAMURAL COMMUNITY OR
EXTRAMURAL WORLD CAN KIND OF
BRING THEM TOGETHER AND USE THEM
IN A WAY TO MAKE THEM BEST
BENEFITED.
EXAMPLE WOULD BE NIH RESEARCHER
YOU
AUTHENTICATION SERVICE TO
PROVIDE ACCESS TO COMPUTER
SYSTEMS.
YOU USE SINGLE SIGN-IN LOG-INS,
PERVASIVE WHERE YOU CAN USE
INSTITUTIONAL SIGN-IN, PROVIDED
TO ANYBODY THAT WANTS TO USE IT
AS WELL AS TOOLS FOR
AUTHORIZATION TO ENABLE ACCESS
TO SPECIFIC RESOURCES WITHIN
THEIR.
RAS IS HEAVILY USED AND
SUPPORTED WITHIN CIT.
WE WORK WITH THE NATIONAL
LIBRARY OF PLEAD SIN --
MEDICINE, CIO, OFFICE OF DATA
STRATEGY.
THEY HELP FEED BACK THE KINDS OF
THINGS THAT CIT NEEDS TO DO,
NEEDS TO GO AFTER, HELP US MAKE
GOOD BUSINESS OPERATIONAL
DECISIONS BASED ON THE BUSINESS
NEEDS OF THE NIH.
OF COURSE, EVERY I.C. HAS THEIR
OWN MISSION-SPECIFIC INVESTMENTS
IN INFORMATION TECHNOLOGY AND
DATA, AND HOW WE KIND OF -- WHAT
PARTS WE COLLABORATE WITH, WHAT
PARTS WE SERVE IS, YOU KNOW,
AREAS THAT WE WOULD LOVE TO SEE
SOME DIRECTION ON.
AND FINALLY OF COURSE A.I.
PLATFORMS, WE'LL HEAR TOMORROW
ABOUT THE A.I. WORKING GROUP,
THERE'S INTEREST IN DATA AND HOW
WE SUPPORT THOSE PLATFORMS, THE
TECHNOLOGY, BRING THEM FORWARD
IS SOMETHING ELSE WE'D LOVE TO
GET FEEDBACK ON.
THERE'S A LOT OF GROWTH, A LOT
OF NEEDS FOR THAT TECHNOLOGY,
AND WE LOOK FORWARD TO HEARING
YOUR ADVICE.
ALL RIGHT.
SO I'M GOING TO FINISH UP.
THANK YOU FOR YOUR TIME.
THIS IS -- WE REALLY APPRECIATE
IT.
WE NEED A ROADMAP.
AS I MENTIONED, FOR THESE TOOLS,
CYBER INFRASTRUCTURE TOOLS,
ROADMAP THAT INVOLVES A.I. AND
DATA SCIENCE.
WE NEED YOUR INPUT ON STRATEGY
AND DIRECTION SINCE IT'S AN
EVOLVING -- IT WILL EVOLVE OVER
TIME, I'M STILL BRAND NEW.
AND I DO THINK WE CAN HAVE AN
IMPACT BOTH IN THE INTRAMURAL
AND THE EXTRAMURAL WORLD IN A
WAY THAT WILL BE WELCOMED.
SO WITH THAT I'LL FINISH UP,
HAPPY TO TAKE QUESTIONS AND I'LL
HAND IT OVER TO DR. TABAK.
>> YEAH, SO LET ME GO THROUGH
THE PROPOSED CHARGE AND THEN
WE'LL TAKE QUESTIONS.
>> SOUND GOOD.
>> SEAN, HELP ME BY ADVANCING.
SO, YEAH, SO THE CHARGE IS I
THINK FAIRLY STRAIGHTFORWARD,
SEAN INDICATED WITH THE
BACKGROUND, HE WANTS CRITICAL
INPUT ON I.T. AND CYBERSECURITY
GOVERNANCE, HE WANTS TO BE ABLE
TO BETTER ARTICULATE
HIGH-PRIORITY AREAS FOR NIH
INVESTMENT IN THESE DIFFERENT
FIELDS, WHICH ARE SO IMPORTANT.
WANTS TO VALIDATE OR PROVIDE
INSIGHT ON PROPOSED STRATEGIES
TO SUPPORT NEW DATA-GENERATING
TOOLS AND PLATFORM, EVALUATE OR
ESTABLISH PROPOSED PLATFORMS FOR
THE INTEROPERABILITY SO CRUCIAL.
NEXT PLEASE.
TO CONTINUE, THE NEED TO
IDENTIFY GAPS, CHALLENGES, AND
OPPORTUNITIES OF COURSE ON ALL
OF ISSUES RELATED TO WHAT IS A
NATIONAL BIOMEDICAL CYBER
INFRASTRUCTURE, TO EVALUATE AND
POTENTIALLY EXPAND THE
CLOUD-BASED TOOLS OR ENHANCE
ACCESS TO RICH DATASETS AND
ADVANCE COMPUTATIONAL
INFRASTRUCTURE, TOOLS AND
SERVICES, AND THAT'S OF COURSE
FOR THE WHOLE ECOSYSTEM,
IDENTIFY AND PROMOTE SOLUTIONS
TO THE VARIOUS CHALLENGES THAT
WE ALL FACE, VIS-A-VIS TRAINING,
RECRUITMENT, BROADENING
TECHNICAL WORKFORCE IN THIS
SPACE, AND THEN TO PROVIDE
INSIGHT AND FEEDBACK ON
RISK-BASED SUPER SECURITY
PROTECTIONS, AGAIN SEAN
EMPHASIZED NEED TO BALANCE THE
PERFECT SECURITY OF COURSE SHUTS
DOWN SCIENCE SO WE HAVE TO
BALANCE.
AND THEN FINALLY, THIS GROUP
WOULD SEEK BROAD INPUT FROM I.T.
AND SCIENTIFIC COMMUNITIES IN
BOTH THE PUBLIC AND PRIVATE
SECTOR, SO MUCH OF WHAT'S GOING
ON NOW IN CUTTING EDGE IS
PRIVATE SECTOR, OBVIOUSLY,
INCLUDE PERSPECTIVES FROM THOSE
WITH EXPERIENCE IN I.T., CYBER
INFRASTRUCTURE AND SECURITY, IN
BOTH RESEARCH AND CLINICAL
ENVIRONMENTS, THE GOAL IS TO
HAVE ONE OR TWO MEMBERS OF THE
ACD, WE'VE ALREADY SENTENCED ONE
OF YOU TO THIS EFFORT.
YOU CAN TELL ATUL IS THE VICTIM
HERE.
BUT THERE IS ROOM IF ONE
ADDITIONAL PERSON WOULD LIKE TO
INVOLVE.
VERY IMPORTANTLY WHAT YOU CAN
HELP SEAN AND ME WITH IS OTHER
PEOPLE YOU MIGHT IDENTIFY FROM
THE ACD OF COURSE BUT FROM
OUTSIDE BOTH IN INDUSTRY AS WELL
AS ACADEMIA.
THE GOAL WOULD BE TO HOLD
QUARTERLY, BIANNUAL MEETINGS TO
PROVIDE FEEDBACK ON EFFORTS.
WE'D LIKE AN INTERIM REPORT, THE
NEXT ACD MEETING IN JUNE, SO
ABOUT A YEAR WITH FINAL REPORT A
YEAR FROM THIS DECEMBER.
IN OTHER WORDS, 18 MONTHS.
THAT'S THE OVERALL CHARGE.
CRUCIALLY UPON TOPIC.
WE HOPE THE ACD WILL AGREE THIS
IS A WORTHY THING TO DO.
AND SO IF THERE ARE ANY SPECIFIC
QUESTIONS, SEAN'S PROBABLY GOING
TO HAVE TO ANSWER THEM BUT IF
YOU WANT TO OFFER THOSE KNOW
THAT WOULD BE GREAT.
YOU CAN'T WEASEL OUT.
>> I KNEW THIS WAS COMING.
I TALKED TO SEAN A COUPLE WEEKS
AGO.
FOR THE RECORD I TECHNICALLY
WORK AT CIT AS A SUMMER STUDENT,
BACK IN 1990.
BACK THEN IT WAS DCRT.
THEY HAD THEIR OWN INTRAMURAL
RESEARCH PROGRAM WITH
STATISTICS, GREAT FOLKS.
PARALLEL COMPUTERS.
I'M ENCOURAGED BY SEEING THE
SCOPE OF CIT POTENTIALLY
GROWING.
HOPEFULLY ALONG WITH THE SCOPE
OF NLM GROWING.
THAT'S A SEARCH ONGOING.
INSTEAD OF FOCUSING ON NIH
INFRASTRUCTURE, INVESTMENT
ROUTERS AND OPERATIONS, CIT CAN
ADD MORE ABOUT, SAY, AN
INTRAMURAL RESEARCH INVESTMENT
AND CERTAINLY EXTRAMURAL
INFRASTRUCTURE AND RESEARCH
OPPORTUNITIES, THAT WOULD NOT BE
A BAD THING AT ALL.
MINOR QUESTIONS, GPUs, AND
STRIDES, WE NEED THOSE BADLY,
I'M LOOKING AT SAVINGS.
WONDER HOW MUCH THE BUDGET IS
FOR STRIDES.
WE CAN HAVE A GRANT THAT EXCEEDS
THAT IN ONE HOUR NOW, IF NOT
PROPERLY TRAINED, I'VE GOT
QUESTIONS ABOUT ChatGPT USE ON
CAMPUS, CLINICAL CENTER'S
MEDICAL RECORDS, ANOTHER WHOLE
ISSUE THERE.
ITS EHR.
CYBERSECURITY, NO ONE CAN EVER
DO ENOUGH ON THAT.
JUST SPEAKING ON BEHALF OF NIH
AS AN ACD MEMBER I'M THRILLED
THEY GOT YOU TO RUN CIT.
YOU I DON'T HAVE TO ANSWER MY
QUESTIONS.
>> I APPRECIATE THAT.
HAPPY TO SHARE THE ANSWERS AS
FAR AS I KNOW ABOUT IT. .
>> WELL, OKAY.
OTHER QUESTIONS?
>> I WAS GOING TO SAY, THE
EXPANDED SCOPE IS EXCITING TOO.
IF I UNDERSTOOD WELL ON THE
RESEARCH EXTRAMURAL RESEARCH NOT
JUST MANAGING THE PROCESSES BUT
POSSIBLY CREATING THIS
ENVIRONMENT SUCH AS STRIDES OR
EXPANDING THAT THE RESEARCH
COMMUNITY IS ALL BUYING LITTLE
PIECES OF SMALL GPUs HERE AND
THERE, PERHAPS A MORE CONCERTED
EFFORT WOULD GET US MUCH FURTHER
AWAY ESPECIALLY IN THE
CONTROLLED ACCESS PORTION OF IT.
SO I THINK IT'S AN EXCITING
TIME.
>> I ALSO WANT TO CLARIFY, WE
CAN'T DO EVERYTHING.
I THINK THIS IS REALLY THE
IMPORTANCE OF THIS GROUP TO HELP
GUIDE US TO, YOU KNOW, SAY WHAT
WE CAN GO AT, WHAT WE SHOULD GO
AFTER, AND WE WILL BE
TRANSPARENT IN TERMS OF WHAT OUR
CONSTRAINTS ARE IN TERMS OF WHAT
WE CAN DO.
WE ALREADY HAVE A FOOTPRINT, IN
ALMOST EVERYTHING I DESCRIBED
TODAY TO SOME LEVEL AND GAVE
EXAMPLES IN MY PRESENTATION.
BUT REALLY LOOKING FORWARD TO
HEARING KIND OF HOW WE SHOULD
KIND OF -- WHAT DIRECTIONS WE
SHOULD GO INTO THAT ARE
OPPORTUNE.
>> WE'RE GOING TO TALK ABOUT NLM
TOMORROW BUT THIS IS A GOOD TIME
TO BRING UP THE FACT THAT DR.
MOONEY AND THE NEW DIRECTOR OF
THE NLM WILL BE PARTNERS, THEY
WILL BE LIKE THIS.
THEY HAVE TO BE LIKE THIS.
AND WE KNOW WE'RE RECRUITING FOR
THAT POSITION.
BUT WE HOPE TO HAVE THAT
POSITION FILLED, YOU KNOW, BE
PART OF THIS PARTNERSHIP AS YOU
GO FORWARD WITH ANY COMMITTEE.
I THINK IT'S IMPORTANT YOU BE
AWARE THAT THEY WILL BE
CO-PARTNERS IN BUILDING WHAT WE
NEED FOR THAT WHOLE ENTERPRISE.
>> WE INTEND -- THANK YOU FOR
THE SUPPORT.
WE INTEND TO BE COLLABORATIVE
AND WE ALSO SERVE.
WE REALLY WANT TO WORK WITH THE
BUSINESS, THE RESEARCH, TO
DIRECT HOW WE GO.
I'M LOOKING FORWARD TO WORKING
WITH THE NEW NLM DIRECTOR WHEN
THEY ARRIVE.
>> IT'S ALWAYS BEEN A MYSTERY TO
ME IS THERE AN INTERNAL
GOVERNANCE OR OVERSIGHT FOR CIT
WITH A BOARD THAT ILLUSTRATES
UNMET NEEDS, AND I'M CURIOUS
WHERE DOES THE CIT BUDGET COME
FROM, STRATEGIC BUDGET, OFFICES
OF DIRECTORS, IC CONTRIBUTION?
>> BUDGET DERIVED FROM A TYPE,
IF YOU WILL, FROM ALL OF NIH.
THEY DON'T HAVE A SEPARATE
CONGRESSIONAL APPROPRIATION.
THAT'S GOOD NEWS AND BAD NEWS.
IN TERMS OF OVERSIGHT THERE ARE
COMMITTEES THAT DEAL WITH FISCAL
ISSUES, THERE ARE COMMITTEES
THAT LOOK AFTER A VERY HIGH
LEVEL THE SCIENTIFIC NEEDS,
ADMINISTRATIVE NEEDS, BUT I
THINK WHAT THIS WORKING GROUP
THAT WE'RE PROPOSING WILL DO IS
FILL A TECHNICAL GAP WHICH WE I
THINK CURRENTLY BACK.
THERE ARE INDIVIDUALS WHO HAVE
EXPERTISE BUT SEAN IS LOOKING
FOR A CRITICAL MASS OF PEOPLE
WITH THIS UNIQUE EXPERTISE THAT
MIGHT ALLOW HIM TO BETTER
CHARITY, YOU KNOW, PUSHING THE
ENVELOPE A BIT MORE.
IS THAT ACCURATE?
>> THANK YOU, YES.
AND TO MANAGE THE PORTFOLIO OF
THINGS GOING ON IN CIT AS WELL.
>> AND I WOULD ASK, YOU KNOW, WE
HAVE TO LIVE WITHIN OUR MEANS,
OF COURSE.
AND AS SEAN SAID, WE CAN'T DO
EVERYTHING.
BUT I WOULD ALSO ASK THE
COMMITTEE TO THINK, BE
AMBITIOUS.
I MEAN, WE'RE HERE TO SERVE THE
BIOMEDICAL RESEARCH COMMUNITY.
AND SO THINK ABOUT WHAT WE NEED
TO DO HERE, AND WHAT CAN BE
LEVERAGED, AND HOW -- WHICH OF
COURSE THAT WILL ALWAYS NEED TO
HAPPEN.
HOW WE CAN BOTH PARTNER AND WHAT
WE NEED TO DO HERE, AND I'M JUST
SAYING, HELP US WITH WHAT YOU
THINK THE COMPUTING AND
CYBERSECURITY NEEDS OF NIH IN
2030 REALLY LOOK LIKE.
DON'T SKIMP.
>> I THOUGHT OF SOMETHING --
THANK YOU.
EARLIER TODAY SOMEONE WAS
PRESENTING AND MENTIONED PEOPLE
GOT TOGETHER AND DECIDED TO USE
DATA COLLECTION, OFTEN WONDERED
THIS MASSIVE COLLECTION OF DATA
ACROSS MASSIVE NUMBERS OF
RESEARCH STUDIES, IS THERE
APPETITE FOR TRYING TO THINK OF
SOME -- I KNOW THERE'S SOME
PARAMETERS THAT ARE HARMONIZED
LIKE DEMOGRAPHICS, HOW WE
CONNECT DATA IN CLINICAL TRIALS,
DEMOGRAPHIC CHARACTERISTICS, BUT
IS THERE APPETITE FOR TRYING TO
THINK OF HARMONIZATION MORE
BROADLY TO BE ABLE TO DO THE
KIND OF LARGE DATA?
>> THOSE ACTIVITIES ARE GOING ON
AT ALL LEVELS.
NOW, WE COUNT ON PEOPLE WANTING
TO PARTICIPATE IN THOSE
ACTIVITIES.
AND WE'RE NOT FORCING ANYBODY.
BEWE DO THINK WE SEE A REAL
SHIFT IN WILLINGNESS TO
COLLABORATE WILLINGNESS TO
HARMONIZE AND SHARE DATA AND I
REALLY THINK THERE'S BEEN GREAT
PROGRESS MADE IN THIS AS PEOPLE
REALIZE THE BENEFITS.
>> OKAY.
SO WITH THAT, ALL RIGHT.
WHAT WE NEED IS A VOTE TO
APPROVE THIS NEW WORKING GROUP.
WE'LL NEED A VOTE, WHETHER TO
ENDORSE THIS RECOMMENDATION, SO
LET ME ASK CAN I HEAR A MOTION
FROM ONE OF THE MEMBERS?
>> SO MOVED.
>> OKAY.
I DO HEAR A SECOND?
>> I SECOND THAT.
>> OKAY.
LET ME SAY ANY OTHER COMMENTS OR
FURTHER DISCUSSION?
OKAY.
SO ALL IN AGREEMENT TO ENDORSE
THE CREATION OF THIS WORKING
GROUP PLEASE SAY AYE AND RAISE
YOUR HAND.
>> AYE.
>> CAN WE SEE THE SCREEN PLEASE?
WE HAVE MEMBERS ON THE
COMMITTEE.
>> I SEE A YES FROM -- LET'S
SEE.
YEAH, I SEE YES FROM OUR
MEMBERS, LOOKS LIKE IT'S
UNANIMOUS.
I'LL TAKE THIS PROPOSAL UNDER
ADVISEMENT, WORK WITH THE TEAM
TO SUPPORT THE CREATION AND
ACTIVITIES OF THE ITCC WORKING
GROUP.
SO WE'RE COMING TO A CLOSE HERE,
LAST FEW MINUTES BEFORE WE WRAP
UP.
I WANT TO TAKE A MOMENT TO
REALLY THANK ALL OF THE
WONDERFUL PRESENTERS TODAY, FOR
PROVIDING UPDATES TO NIH
PROGRAMS, HIGHLIGHTING UP AND
COMING NIH INITIATIVES, I ALSO
WANT TO THANK THE ACD MEMBERS
FOR PROVIDING YOUR VALUABLE
INPUT AND FEEDBACK, AND YOU'RE
INCREDIBLY BUSY PEOPLE, WE'RE SO
GRATEFUL THAT YOU PARTICIPATE IN
THIS PROCESS.
IT IS CRITICAL, CRITICALLY
IMPORTANT TO US MOVING FORWARD.
AS YOU CAN SEE I'VE TAKEN MANY
NOTES, SO IT'S BEEN REALLY GREAT
DISCUSSIONS AND INPUT FROM YOU
ALL TODAY.
AND LASTLY, I'D LIKE TO THANK
EVERYONE WHO TUNED IN ON THE
MEETING.
WE'LL RESUME THE ACD MEETING AT
9:15 TOMORROW, FRIDAY, JUNE 14.
WITH THAT WE'LL ADJOURN TILL
TOMORROW.
THANK YOU.
[END OF PROGRAM]