AS A REMINDER THIS MEETING IS
OPEN TO PUBLIC INCLUDING MEMBERS
OF THE PRESS AND IS BEING SHOWN
LIVE TO ANYONE WHO WANTS TO WATCH.
I'M TARA SCWETZ, THE CHAIR FOR
THE COUNCIL OF COUNCILS.
IT'S NICE TO SEE YOU ALL IN
PERSON AND APPROXIMATE PUT A 3
DIMENSIONAL FACE COMPARED TO THE
LAST 1 IN ZOOM, COMPARED TO THE
LAST 8-9 MONTHS HERE.
SO THIS IS THE LAST TIME WE'VE
BEEN IN PERSON FOR THE LAST 4
YEARS OF VIRTUAL MEETINGS,
UNFORTUNATELY WE DO STILL HAVE A
FEW FOLKS WHO ARE UNABLE TO
ATTEND TODAY WE HAVE DOCTORS
JOHNSTON AND LLOYD WHO ARE
JOINING US VIRTUALLY, SO THAT'S
ACTUALLY A GREAT BENEFIT OF 1 OF
THE THINGS THAT CAME OUT OF THE
PANDEMIC WAS THIS ADDED
FLEXIBILITY TO BE ABLE TO STILL
INCLUDE THOSE WHO ARE UNABLE TO
TRAVEL WITH US.
QUEE ARE SO GLAD YOU ARE ABLE TO
JOIN VIRTUALLY.
HOPEFULLY WE WILL HAVE YOU HERE
IN PERSON SOON.
SO WITH THAT, I'M ALSO JOANED BY
DR. FREFRESH YOUR RECOLLECTION
ANZIERK SKA GRIEDER, WHO IS THE
EXECUTIVE SECRETARY OF COUNCIL
OF COUNCILS WHO YOU ALL KNOW
VERY WELL AND THE DIRECTOR OF
OFFICE AND RESEARCH
INFRASTRUCTURE PROGRAM.
THAT'S HER DAY JOB AS WE SAY.
ADDITIONALLY I WANT TO RECOGNIZE
A FEW COLLEAGUES IN THE ROOM AND
IF YOU NEED ANYTHING, THESE ARE
THE FOLKS I RECOMMEND YOU REACH
OUT TO.
TO MY RIGHT IS THE DEPUTY
DIRECTOR OF DPC PSI ROBIN GOY,
WE ALSO HAVE 2 ADVISORS TO DPC
PSI, ME AND ELEN WHO ARE SITTING
ON OTHER SIDE OF THE TABLES AND
MARTINA [INDISCERNIBLE] WHO IS
THE ANALYST IN THE DIVISION WHO
REALLY IS KEY TO HELPING PLAN
THIS MEETING AND GET EVERYTHING
COORDINATED.
ALSO RECOGNIZE AT THE COUNCIL OF
COUNCILS SHE IS ASSISTED BY MARK
DENNIS, BECKY RIETION AND JOHN
DIFIS, IF YOU NEED ANYTHING,
TECHNICALLY OR ASKING LOGISTICS
FOR TRAVEL, THEY ARE THE 1S TO
FIND AND IDENTIFY.
SO IF THEY'RE SITTING KIND OF
OVER THERE IN THE BACK, SO IF
YOU NEED ANYTHING, YOU CAN GRAB
THEM.
AND LASTLY, THANK YOU TO THE
COUNCIL OF COUNCIL PLANNING TEAM
WHO HELPED GET EVERYTHING IN
ORDER AND BRING EVERYTHING
TOGETHER FOR TODAY'S ACTIVITIES.
NOW BEFORE WE ACTUALLY TRULY GET
GOING INTO THE MEETING, I WILL
TURN IT OVER TO FRANCSIKA, TO
REMIND YOU OF A FEW OF OUR
PROCEDURES AND TAKE ROLL CALL.
NGREAT.
THANK YOU VERY MUCH.
TARAN. I WANT TO ADD MY WELCOME
TO EVERYBODY--SO I AM GLAD WE
ARE BACK.
I WILL REMIND YOU OF SOME RULES
WHICH WILL HELP TO INSURE THAT
ALL ARE ABLE TO CONTRIBUTE.
WE ASK YOU TO REMAIN MUTED ON
YOUR MICs, AND YOU SEE THE RED
RING HERE ON THE MICROPHONE OF
COURSE INDICATED WHEN YOU ARE
SPEAKING AND YOUR MIC IS ON,
PLEASE TURN IT OFF AFTER YOU
SPOKE BECAUSE WE ONLY CAN HAVE A
CERTAIN NUMBER OF THE MICs ON
AT ANY GIVEN TIME.
FOR THE ONLINE COUNCIL MEMBERS
IF YOU WOULD LIKE TO MAKE A
COMMENT OR ASK A QUESTION,
PLEASE USE THE RAISE HAND
FEATURE OR ENTER YOUR COMMENTS
OR QUESTION INTO THE CHAT
CONTROLLER OF BANK, 1 OF US WILL
CALL ON YOU, UNMUTE YOUR
MICROPHONE AND THEN YOU WILL BE
ABLE TO PARTICIPATE.
WE HAVE HELP FOR YOU IF YOU NEED
ANY HELP.
TECHNICAL DIFFICULTIES WILL BE
TACKLED BY LAUREN AND
[INDISCERNIBLE], I THINK THEY
SIT BACK THERE IN THE TABLE IN
THE CORNER AND FOR ECP ISSUES IF
YOU HAVE ISSUES LOGGING ON TO
ECP, SOME OF YOU MAY HAVE
EXPERIENCED THIS, THAT WOULD BE
TINA, WOULD YOU PLEASE RAISE
YOUR HAND.
TINA WILL SAVE YOU AND RESCUE
YOU AND GET YOU BACK ON TRACK,
ALL RIGHT, SO LET'S DO ROLL CALL
SO ALL THE COUNCIL MEMBERS CAN
INTRODUCE YOURSELF EMPLOY WE
WILL GO,A ROUND THE TABLE AND
ARBTRARLY STARTING ON 1 END AND
I'M STARTING WITH SUSAN PLEASE
SAY YOUR NAME, OUR AFFILIATION,
AND IF YOU HAVE SERVED ON
ANOTHER COUNCIL OR IF YOU ARE
CURRENTLY SERVING ON ANOTHER
COUNCIL.
>> GOOD MORNING EVERYONE, I'M
SUSAN [INDISCERNIBLE], PROFESSOR
OF INFECTIOUS DISEASES OF THE
COLLEGE OF RETROMEDICINE AT THE
UNIVERSITY OF GEORGIA AND I HAVE
NOT SERVED ANOTHER COUNCIL.
>> I AM RUSS VANG ILDER,
OPHTHALMOLOGY, UNIVERSITY OF
WASH WASH, I PREVIOUSLY SERVED
ON THE EYE COUNCIL OF THE NEI.
>> I'M LAUREN SILVAS WITH
TEMPEST SENIOR VICE PRESIDENT OF
EXTERNAL AFFAIRS AND I HAVE NOT
SERVED ON ANOTHER COUNCIL.
>> GOOD MORNING [INDISCERNIBLE]
DEAN OF SCHOOL OF PUBLIC AND
PUBLIC HEALTH SCIENCES AT U OF
AMHURST, I HAVE SERVED ON
NHLBI'S COUNCIL, AS WELL AS I AM
THE LIAISON FOR THE ECHO
PROJECT.
>> MORNING I'M DOUG
[INDISCERNIBLE], I'M
DISTINNINGISHED PROFESSOR IN
PEDIATRICS AT THE UNIVERSITY OF
COLORADO SCHOOL OF MEDICINE.
PREVIOUSLY SERVED ON THE NIERK
CHD COUNCIL FROM 15-19 AND HAPPY
TO BE HERE.
>> GOOD MORNING KEVIN JOHNSON
ISSUES PROFESSOR OF BIOMEDICAL
POODIATRICS SCIENCE EDKAIG AT
THE UNIVERSITY OF PENNSYLVANIA.
I PREVIOUSLY SERVED ON THE
NATIONAL LIBRARY MEDICINE'S
COUNCIL AS WELL AS WHAT USED TO
BE NCRR'S COUNCIL.
HAPPY TO BE HERE AS WELL.
>> GOOD MORNING I'M ROBIN
[INDISCERNIBLE] I'M DEPUTY
DIRECTOR OF DPC PSI.
>> OH SORRY.
OKAY, I'M MONICA
[INDISCERNIBLE], I AM A
PROFESSOR OF MEDICINE IN THE
DIVISION OF HIV INFECTIOUS
DISEASE AND GLOBAL MEDICINE AT
UCSF AND REALLY LUCKY TO HAVE
BEEN ON NIAID COUNCIL DURING THE
PANDEMIC AND THEN BEFORE THAT
THE OFFICE OF THE AIDS RESEARCH
ADVISORY COUNCIL.
>> HI, I'M RHONDA ROBINSON, I AM
THE ODD BALL IN THE GROUP.
I AM NOT A RESEARCHER, IT'S
IMPORTANT TO SAY THAT OKAY,
BECAUSE MY POINTS OF VIEW WILL
COME KRSES THAT WAY.
I WORK FOR UNITED HEALTH GROUP.
I HAVE BEEN ON PREVIOUS COUNCIL
NIMH AND I AM CURRENTLY BESIDE
THIS IS GROUP, I AM ALSO WORKING
WITH THE BLUEPRINT MED TECH
GROUP AS WELL AS ALL OF US.
>> GOOD MORNING, MY NAME IS JANE
KING AND I'M [INDISCERNIBLE]
FAMILY DEAN AT POLYTECHNIC
INSTITUTE AND PROFESSOR AT
U-MASS, I'M A PROFESSOR OF
NEUROSCIENCE AND I WAS
CURRENT--PAST YEARS AGO FOR THE
NATIONAL INSTITUTE ON
COMPLIMENTARY MEDICINE AND
INTEGRATIVE HEALTH.
>> GOOD MORNING BARBARA KELLY,
EXECUTIVE DIRECTOR OF THE
HEARING LOSS ASSOCIATION OF
AMERICA, WHICH IS A CONDITION
SIEWMER ORGANIZATION HERE IN THE
D. C. AREA AND I PREVENTIVUOUSLY
SERVED ON THE NATIONAL INSTITUTE
ON DEAFNESS AND OTHER
COMMUNICATION DISORDERS.
>> I AM RAFAEL [INDISCERNIBLE],
I AM THE CHAIR OF THE DEPARTMENT
OF DATA SCIENCE AT DANA BARBER
CANCER INSTITUTE AND PROFESSOR
OF BIOSTATISTICS AT HARVARD
SCHOOL OF PUBLIC HEALTH AND I
SERVE ON THE GENOME COUNCIL OF
NHGRI.
>> I AM KRISTIN [INDISCERNIBLE]
WITH THE BROOD INSTITUTE IN
MASSACHUSETTS AND I HAVE NOT
SERVE OFFICE OF --SERVED ON PRES
COUNCILS.
>> KAREN DO YOU WANT TO
INTRODUCE YOURSELF?
KAREN?
>> GOOD MORNING.
SORRY I CAN'T BE THERE WITH YOU
TODAY, I AM KAREN JOHNSON, I'M
AT THE UNIVERSITY OF VIRGINIA,
PROFESSOR OF NEUROLOGY AND I
HAVE PREVIOUSLY BEEN ON THE
NINDS COUNCIL.
>> GOOD MORNING EVERYONE, AND MY
APOLOGIES FOR NOT BEING THERE IN
PERSON, I HOPE TOO SEE YOU NEXT
TIME.
MY NAME IS KEN LORD, SCHOOL OF
MEDICINE AT UC DAVIS AND I HAVE
SERVE OFFICE OF DIVERSITY
COUNCIL OF COUNCIL PREVIOUSLY.
THANK YOU.
>> ALL RIGHT WE ALSO WANT TO
TAKE A FEW MOMENTS AND I HOPE
THEY KNOW THIS, I'M NOT
SURPRISING THEM BUT TO BRUCE OUR
OFFICE OF DIRECTORS AND DEPUTY
DIRECTORS REPRESENTED HERE
TODAY.
WE HAVE MANY OFFICES
REPRESENTED, UNFORTUNATELY NOT
QUITE ALL OF THEM.
A LOT OF PEOPLE HAVE TRAVEL AND
OTHER COMMITMENTS BUT WE ARE
LUCKY TO HAVE THOSE FOLKS WE
HAVE HERE.
SO I DON'T KNOW HOW TO WANT TO
GO DOWN THE LINE.
>> DREW, WITH THE OFFICE OF
NUTRITION AND RESEARCH, GLAD TO
BE HERE, THANK YOU.
>> HI, JEANINE SIMONS, OFFICE OF
DIRECTOR OF SOCIAL SCIENCE
RESEARCH.
>> HELLO I'M DEANNA
[INDISCERNIBLE] DIRECTOR OFFICE
OF AIDS RESEARCH.
>> GOOD MORNING EVERYONE I'M
SHEILA KALD WELL, I'M ACTING
DEPUTY DIRECTOR FOR THE TRIBAL
RESEARCH HEALTH OFFICE.
>> [INDISCERNIBLE] DIRECTOR OF
THE HEALTHER AND GENDER MINORITY
RESEARCH OFFICE.
>> GOOD MORNING [INDISCERNIBLE]
OFFICE OF SEXUAL GENDER AND
MINORITY OFFICE.
>> CAROLYN CANNED WHAT IN
OCTOBER I WILL BECOME THE OFFICE
OF STRATEGIC COORDINATION.
>> GOOD OTHER THANKING VIVIAN
[INDISCERNIBLE] I'M THE DEPUTY
DIRECTOR OF THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH.
>> GOOD MORNING STEPHANIE
GEORGE, DEPUTY DIRECTOR OF THE
OFFICE OF DIETARY SUPPLEMENTS.
>> EXCELLENT.
GREAT.
THANK YOU SO MUCH.
I THINK WE COVERED EVERYBODY,
YES, SO LET ME DO A FEW
ADDITIONAL ANNOUNCEMENTS AND
THEN WE CAN START WITH THE
MEETING.
MATERIALS FOR THIS MEETING WERE
SENT VIA CERTAINLY--CERTAINLY
MAIL THAT DR. SCHWETZ SENT TO
YOU EMPLOY MATERIALS ARE
AVAILABLE ON THE TABLE IN THE
BACK SO IF YOU WANT ANY OF THE
MATERIALS THAT ARE ALSO
DISPLAYED OF COURSE.
AS MEMBERS OF THIS COUNCIL, YOU
ARE SPECIAL GOVERNMENT EMPLOYEES
AND ARE THEREFORE SUBJECT TO THE
RULES OF CONDUCT THAT APPLY TO
FEDERAL EMPLOYEES.
WELCOME TO OUR CLUB.
THESE RULES AND REGULATIONS ARE
EXPLAINED IN A REPORT ENTITLED:
STANDARDS OF ETHICAL CONDUCT FOR
EMPLOYEES OF THE EXECUTIVE
BRANCH WHICH YOU RECEIVED WHEN
YOU WERE APPOINTED TO THE
COUNCIL.
WE AT EVERY MEETING IN,A DITION
TO REMINDING YOU OF THE
IMPORTANCE OF FOLLOWING THE
ETHICS RULES, WE ALSO LIKE TO
REVIEW THE STEPS THAT WE TAKE
AND ASK YOU TO TAKE TO INSURE
THAT ANY CONFLICTS OF INTEREST
BETWEEN YOUR PUBLIC
RESPONSIBILITIES AND YOUR
PRIVATE INTERESTS AND ACTIVITIES
ARE IDENTIFIED AND ADDRESSED.
THEREFORE, 3 TIMES A YEAR, YOU
PROVIDE US WITH INFORMATION
ABOUT YOUR PERSONAL,
PROFESSIONAL AND FINANCIAL
INTERESTS.
WE USE THIS INFORMATION FOR A
BASIS FOR ASSESSING WHETHER YOU
HAVE ANY REAL POTENTIAL OR
APPARENT CONFLICT OF INTEREST
THAT COULD COMPROMISE YOUR
ABILITY TO BE OBSESSIVE JECTIVE
IN GIVING ADVICE DURING THE
COUNCIL MEETING.
IF SUCH CONFLICT IS IDENTIFIED
WE EITHER ISSUE A WAIVER OR
RECUSE YOU FROM A PARTICULAR
PORTION OF THE MEETING.
WE ALSO RELY TO A GREAT DEGREE
ON YOU TO BE ATTENTIVE DURING
THE MEDING TO THE POSSIBILITY
THAT IF ANY ISSUES ARISES THAT
COULD AFFECT YOUR JUDGMENT.
SO IF THAT HAPPENS WE ASK YOU TO
RECUSE YOURSELF, YOU WILL STEP
OUT OF THE ROOM IN THE CASE OF
OUR VIRTUAL PARTICIPANTS, WE
WILL PUT THEM IN A WAITING ROOM
SO TO SPEAK.
IF YOU HAVE ANY QUESTIONS ABOUT
RULES OF CONDUCT OR CONFLICT OF
INTEREST, OR SPICIALIST
[INDISCERNIBLE], AND YOU HAVE
COMMUNICATE WIDE HER EXTENSIVELY
BECAUSE SHE'S THE 1 WHO ASKS YOU
ABOUT THOSE CONFLICTS, WILL BE
HAPPY TO ADDRESS THEM.
LET ME ADDRESS A COUPLE THINGS
ABOUT MEETING PROCEDURES.
TIME IS ALLOTTED IN THE AGENDA
FOR DISCUSSIONS BY THE COUNCIL
FOLLOWING EACH OF THE
PRESENTATION.
UNFORTUNATELY THERE IS LIMITED
TIME FOR ANY COMMENTS FROM OTHER
ATTENDEES, THE PUBLIC IS WELCOME
TO SUBMIT COMMENTS IN WRITING
AFTER THE MEETING, INSTRUCTIONS
FOR DOING SO WILL BE RELEASED
AND PUBLISHED ON AUGUST 8th.
APPROVED MINUTES OF THIS MEETING
WILL BE AS ALL MINUTES ARE
PUBLISHED ON THE DPC PSI ON THE
WEBSITE.
WE TALK ABOUT THE MICROPHONES
ABOUT THEM BEING ON AND PLEASE
SPEAK INTO THE MICROPHONE IF YOU
WOULD PLEASE MENTION YOUR NAME
BEFORE YOU MAKE A COMMENT THAT
HELPS OUR TRANSCRIPTIONIST.
FUTURE MEETINGS, ALL FUTURE
MEETINGS, SO THIS IS THE LAST
MEETING FOR THIS YEAR BUT FUTURE
MEETINGS FOR 25, I AM ALREADY
TALKING ABOUT 25.
THE FIRST MEET NOTHING 25 IS
FEBRUARY 6 AND 7.
THAT'S SCHEDULED.
I HOPE IT'S ON YOUR CALENDARS,
THE FOLLOWING 2 OF THE 3
SCHEDULED MEETING ARE MAY 29 AND
30, AND SEPTEMBER 11 AND 12.
THEY ARE ALWAYS LISTED ON YOUR
AGENDAS AND ON THE WEBSITE OF
DPC PSI, THE CLOSED SESSION
TODAY WILL BE OF THE 2 DAY
MEETING TODAY FROM 12-1 AND AS
YOU KNOW THAT'S FOR THE SECOND
LEVEL OF REVIEW OF APPLICATIONS
IN THIS COUNCIL ROUND.
WE HAVE SCHEDULED A LUNCH BREAK
THEREAFTER FROM 1-2, AND AFTER
THAT, WE'LL TAKE A PICTURE OF
ALL OF YOU WHO ARE HERE.
YOU ALREADY SAW THE CAFETERIA
ACROSS THE HALL, I SEE IN OF YOU
HAVE TAKEN ADVANTAGE FOR COFFEE.
WE WILL RESTART THE OPEN SESSION
OF THE MEETING AT 2:15 AND ASK
OUR GUESTS TO ALSO BE HERE AND
THAT CONCLUDES MY REMARKS AND
I'LL HAND IT BACK TO TARA.
NTHANKS FRAN ZISKA.
BEFORE WE MOVE ON, WE CAN'T SEE
ON THE BIG SCREEN BUT I CAN SEE
ON MY COMPUTER SCREEN, WE HAVE 2
OF OUR OFFICE DIRECTORS, 3,
ONLINE SO MAYBE IF I CAN ASK
THEM TO INTRODUCE THEMSELVES
REALLY QUICKLY, MAYBE JUST--OH,
4.
OKAY, VIDEOS KEEP POPPING ON AND
I KEEP SEEING THEM.
ALL RIGHT, I WILL GO IN ORDER
THAT I SEE ON THE SCREEN, SO
STEPHAN?
>> GOOD MORNING EVERYONE.
STEPHAN [INDISCERNIBLE] DIRECTOR
OF THE OFFICE OF DIETARY
SUPPLEMENTS.
>> SUSAN?
>> GOOD MORNING SUSAN
[INDISCERNIBLE] OFFICE OF
SCIENCE STRATEGY.
>> GEORGE SOME.
>> GEORGE [INDISCERNIBLE] OFFICE
OF PORTFOLIO ANALYSIS.
>> AND DAVID?
>> DAVID MURRAY, DIRECTOR OF THE
OFFICE OF DISEASE PREVENTION.
>> GREAT.
NOW I THINK WE HAVE EVERYONE
COVERED.
SO THANK YOU ALL EMPLOY I WOULD
LIKE TO REPEAT THAT WE ARE IN
OPEN SESSION FOR TODAY'S MEETING
WHICH MEANS IT'S OPEN TO THE
PUBLIC AND MEMBERS OF THE PRESS
AND OTHERS SO WE'RE ALSO
VIDEOCASTING THE MEETING SO THAT
ANYONE WHO WANTS TO CAN LISTEN
IN AND HEAR DISCUSSIONS.
OKAY, WELL, LET'S KICK THINGS
OFF.
I PROBABLY SHOULD HAVE DONE THIS
FIRST BUT I WAS VERY EBS SIGHTED
TO HAVE A GAVEL, IT FEELS
POWERFUL, IN SOME ODD WAY SO I
WILL HIT THE GAVEL AND
OFFICIALLY MARK US IN SESSION.
WE HAVE A REALLY PACKED AGENDA
TODAY AND TOMORROW WE DID TRY TO
BUILD IT IN SO THAT YOU ALL
COULD GET OUT OF HER AT A
RELATIVELY DESCENT TIME TOMORROW
TO CATCH FLIGHTS AND WHAT NOT.
BUT OF COURSE THROUGHOUT THE
NEXT COUPLE DAYS IF YOU NEED TO
STEP AWAY, EVEN IF WE'RE NOT IN
BREAK, WE ARE ALL ADULTS WE
UNDERSTAND, SO FEEL FREE.
THERE'S OBVIOUSLY SPACE OUTSIDE
WHERE YOU CAN TAKE CALLS AND
THAT SORT OF THING AND IF YOU
NEED ANYTHING MORE PRIVATE,
PLEASE LET FOLKS ON THE TEAM
KNOW.
SO AFTER I PROVIDE A FEW UPDATES
ON KIND OF WHAT'S BEEN GOING ON
ACROSS DPC PSI IN PARTICULAR, WE
WILL HEAR FROM DR. LARRY TA BAK
WHO IS DEPUTY DIRECTOR OF NIH,
AND WE WILL HEAR UPDATES FROM
THE ALL OF US RESEARCH PROGRAM
INCLUDING THEIR NEW DATA RELEASE
THAT WILL BE COMING AND A VOTE
ON COUNCIL OPERATIONS, ALL OF US
RESEARCH PROGRAM ADVISORY MANLE
WORKING GROUP REPORT WHICH
RHONDA CAN WEIGH IN ON QUITE
SIGNIFICANTLY AND 2 CONCEPT
CLEARANCES.
WE WILL HAVE A CLOSED SESSION
FOR A FEW HOURS AT NOON TODAY
AND PLAN TO FINISH HOPEFULLY BY
AROUND 3:45 SO WE CAN GET YOU
OUT OF HERE AT A DESCENT TIME,
TOO, TODAY AND OF COURSE WE HAVE
COUNCIL DINNER THIS EVENING
WHICH I'M VERY MUCH LOOKING
FORWARD TO.
THEN TOMORROW JUST TO RUN
THROUGH TOMORROW'S AGENDA REALLY
QUICKLY WE HAVE THE VARIOUS
DIFFERENT DIRECTORS OF EACH OF
THE--EXCUSE ME--LOOKING AHEAD
TOO FAR, WE WILL KICK OFF AT 9
AM.
JUST A NOTE, AND WE HEARD THIS
FROM A FEW OF YOU ALL THIS
MORPING AS WEB CONNECTED WERE
CHATTING BUT THOSE THAT WERE
TAKING THE SHUTTLE FROM THE
HOTEL, WE WILL CHANGE THE PICK
UP TIME TO BE MORE REASONABLE,
SO 8:15, EVEN IF YOU WANT TO
WALK, YOU'RE WELCOME TO WALK.
WE REALLY GOTTEN STARTED AND
WE'RE GETTING ROUNDS OF
APPLAUSE.
THIS IS GREAT.
SO HOPEFULLY THAT GIVES YOU GUYS
MORE TIME IN THE MORNING TO
SLEEP IN OR CHECK E-MAIL OR
WHATEVER YOU NEED TO DO.
AND WE WILL GET GOING AGAIN AT 9
TOMORROW AND WE HAVE 5 CONCEPT
CLEARANCES TOMORROW.
SO IT'S GOING TO BE A BUSY DAY,
BUT AS I SAID WE WILL PLAN TO
GET OUT OF HERE SO FOLKS CAN
HEAD TO THE AIRPORT SHORTLY
AFTER 12:30.
SO WOE HAVE ALREADY INTRODUCED
ALL THE OFFICE DIRECTORS, SO I'M
JUST GOING TO JUMP INTO MY
SLIDES SO WE CAN GO TO THE NEXT
SLIDE .
YOU ALREADY SAW A LOT OF THOSE
FOLKS IN PERSON SO LET'S JUST
JUMP AHEAD.
IF WE CAN GO TO THE NEXT SLIDE.
OOH AND WE HAVE MOOD LIGHTING.
WELL, GREAT.
SO AS YOU HEARD A SECOND AGO I'M
REALLY PLEASED TO WELCOME JUST
IN GENERAL TO THE DIVISION, BUT
ALSO IN PERSON DR. CAROLYN
HUTTER WHO SHE WILL BE COMING ON
BOARD AS SHE SAID IN OCTOBER AS
THE DIRECTOR OF OUR OFFICE OF
STRATEGIC COORDINATION OTHERWISE
KNOWN AS COMMON FUND OFFICE.
DR. HUTTER BRINGS MORE THAN 20
YEARS OF EXPERIENCE AND GENETICS
AND EPIDEMIOLOGY AND MANAGING
LARGE RESEARCH COLLABORATIONS.
SHE'S COMING TO US FROM NOT THAT
FAR AWAY, SHE'S COMING TO US
FROM THE NATIONAL HUMAN GENOME
INSTITUTE OR NHGRI.
SHE HAS BEEN THE DIRECTOR OF THE
DIVISION OF GENOME SCIENCES
THERE.
SO IN HER ROLE THERE, SHE HAS
LED NHGRI'S EFFORTS IN BASIC
GENOMICS RESEARCH FUNDING AND
PROGRAM MANAGEMENT AND HAS A LOT
OF EXPERIENCE WITH ALL STAGES OF
COMMON FUND PROGRAM.
SHE'S BEEN REALLY INVOLVED IN A
NUMBER OF COMMON FUND PROGRAMS
AS WELL AS VARIOUS DIFFERENT
LEADERSHIP OPPORTUNITIES ACROSS
THE AGENCY TO HELP SORT OF SHAPE
SOME OF THE INITIAL CONCEPT AND
FUNDING OPPORTUNITIES FOR COMMON
FUND PROGRAMS BUT PROGRAMS MORE
BROADLY AND SHE BEGAN HER CAREER
AS A PROGRAM DIRECTOR AND
DIVISION OF GENOMIC MEDICINE AT
NHGRI.
SO WE'RE DELIGHTED TO HAVE
CAROLYN HERE TODAY AND AS WE
SAID IN A FEW WEEKS YOINING US
OFFICIALLY AND PERMANENTLY IN
THE DIVISION.
SO IF WE GO TO THE NEXT SLIDE.
UNFORTUNATELY NOT HERE TODAY BUT
JOINING US ALSO IN OCTOBER WE
ARE DELIGHTED TO WELCOME
DR. JERRY [INDISCERNIBLE] WHO
WILL SERVE AS THE ASSOCIATE
DIRECTOR FOR AIDS RESEARCH IN
THE DIRECTOR OF THE OFFICE OF
AIDS RESEARCH.
THE DOCTOR IS A CLINICAL
PSYCHOLOGIST AND HAS MORE THAN
25 YEARS OF HIV/AIDS RESEARCH
EXPERIENCE FOCUSING ON
UNDERSTANDING VARIOUS DIFFERENT
UNDERLYING MECHANISMS OF RISKY
SEXUAL BEHAVIOR AND SUBSTANCE
USE AMONG YOUTH AND SHE'S ALSO
DESIGNED ESPECIALLY TARGETED
INTERVENTIONS TO PREVENT HIV
TRANSMISSION.
SO SHE IS CURRENTLY THE
PROFESSOR OF MEDICINE,
PSYCHOLOGY AND EPIDEMIOLOGY AND
BIOSTATISTICS AND ALSO THE CHAIR
OF SCHOLARLY ACTIVITIES IN THE
DEPARTMENT OF MEDICINE AT THE
UNIVERSITY OF ILLINOIS CHICAGO.
SHE ALSO IS THE FOUNDING
DIRECTOR OF THEIR CENTER FOR
DISSEMINATION IMPLEMENTATION
SCIENCE AND HEALTH DISPARITIES
AND THE HEALTH DIRECTOR PROGRAM
AT UIC, SO SHE'S BEEN REALLY
ENGAGE WIDE NIH RESEARCH OVER
MANY, MANY YEARS AND SHE'S BEEN
A GREAT REVIEWER AND A CHAIR OF
STUDY SECTIONS SO SHE'S
VERY--AND A PI ON A NUMBER OF
GRANTS AND SO SHE IS REALLY
FAMILIAR WITH NIH FROM THE
OUTSIDE, SO WE'RE GOING TO GET
HER FAMILIAR WITH NIHOT INSIDE
MOVING FORWARD.
AND IN ADDITION I JUST WANT TO
TAKE A MOMENT TO ACKNOWLEDGE
DEANNA, WHO IS HERE IS PERSON
AND HAS BEEN SERVING AS THE
ACTING DIRECTOR OF OAR FOR THE
PAST FEW MONTHS AND APPRECIATE
HER WILLINGNESS TO STEP IN AND
LEAD THE OFFICE OVER THIS TIME
PERIOD.
IN ADDITION TO HER PREDECESSOR,
BILL [INDISCERNIBLE] WHO ALSO
SERVED AS ACTING OAR DIRECTOR
AND NOT HERE IN PERSON, AT LEAST
NOT THAT I'M SEEING IS DR. DOUG
SHEELY, WHO HAS BEEN SERVING AS
THE ACTING DIRECTOR OF OFFICE OF
STRAY JECTORY STIGIC
COORDINATION AND I THINK HE TOLD
ME THE OTHER DAY, IT WAS LIKE 19
MONTHS SO IT'S BEEN--IT'S BEEN
QUITE A BIT OF TIME BUT WE'RE
DELIGHTED SO WELCOME BOTH
CAROLYN AND JERRY TO THE FOLD
AND ARE REALLY GRATEFUL TO
DEANNA AND DOUG.
OKAY, SO WE'RE GOING TO HAVE A
FEW MORE SCIENTIFICALLY FOCUSED
UPDATES ABOUT PROGRAMS OF
VARIOUS DIFFERENT ACTIVITIES
THAT BEEN ONGOING ACROSS THE
DIVISION.
SO IF WE CAN GO TO THE NEXT
SLIDE.
THERE ARE A COUPLE OF REPORTS
THAT HAVE COME OUT RECENTLY THEY
WANT TO CALL ATTENTION TO.
THE FIRST IS NONHUMAN PRIMATE
EVALUATION AND ANALYSIS REPORT
THAT WAS INITIATED AT THE
REQUEST OF THE OFFICE OF
RESEARCH INFRASTRUCTURE PROGRAMS
AND THE OFFICE OF NIH OAR, AND
IT PROVIDES A NICE OVERVIEW OF
THE DEMAND AND SUPPLY OF
NONHUMAN PRIMATES ACROSS THE
UNITED STATES AND REALLY COVERS
AND BUILDS ON THE PREVIOUS
REPORT THAT WAS RELEASED AND IT
OUTLINES THE TRENDS FROM
2018-2022 AND DOES A LITTLE BIT
OF FORECASTING AS WE MOVE
FORWARD FOR THE MIXTURE 4 OR 5
YEARS.
WE ALSO HAD A REPORT COME OUT
FROM THE OFFICE OF SEXUAL AND
GENDER MINORITY RESEARCH AND
THEY RELEASED THEIR ANNUAL
REPORT WHICH REALLY ILTRAITS I
THINK THE BREDTH OF SEXUAL
GENDER AND MINORITY RELEVANT
WORK HA'S CONDUCTED ACROSS NIH,
ACROSS INSTITUTE CENTERS AND
OFFICES AND HIGHLIGHTS SEX AND
GENDER MINORITY RESEARCH OR
ASSOCIATED RESEARCH ADVANCES AT
NIH.
OR AT LEAST THAT WERE SUPPORTED
BY NIH FROM 2023.
GO TO THE NEXT SLIDE.
ALSO RELATED TO ORIP, ON
AUGUST 6 AND 7 G, THEY HELD AND
HOSTED THE 14th COMPORRAATIVE
MEDICINE RESOURCE DIRECTORS
MEETING.
NOW MUCH LIKE COUNCIL THIS WAS
THEIR FIRST IN-PERSON MEETING
SINCE 2019 SO THAT'S QUITE A
LONG SPELL THAT THEY HAD NOT
BEING IN PERSON.
IT WAS A REALLY--I WAS ONLY ABLE
TO STAY FOR A LITTLE BIT BUT IT
WAS A REALLY, REALLY INFORMATIVE
MEETING AND I THINK THE FOLKS
HAD LOTS OF GREAT DISCUSSIONS
ABOUT, YOU KNOW SHARING SOME OF
THE CUTTING ADVANCEMENTS AND
INFORMATION THAT'S COMING
THROUGH IN THE FIELD AND HELPING
TO BUILD UP AND FOSTER VARIOUS
DIFFERENT COLLABORATIONS.
YOU'RE ABLE TO DO THAT A BIT
MORE WHEN YOU'RE IN PERSON.
AND THEY ALL TALKED ABOUT SOME
OF THE FUTURE DIRECTIONS OF THE
RESEARCH IN THIS AND COMPARATIVE
MEDICINE.
SO IF WE GO TO THE NEXT SLIDE, 1
THING I WANT TO CALL, JUST LAST
DECEMBER, WE POSTED A REQUEST
FOR INFORMATION OR RFI TO HELP
SOLICIT PUBLIC INPUT FOR VARIOUS
DIFFERENT TOPICS THAT COULD BE
INFORMATIVE AS WE DEVELOP THE
NIH STRATEGY OR STRATEGIC PLAN
FOR DATA SCIENCE.
FOR 2023 TO 2028.
AND THE RFI CLOSED BACK IN MARCH
AND WE HAD 63 RESPONSES THAT
COVERED ALL OF THE GOALS AND THE
STRATEGIC PLAN THAT WERE KIND OF
LAID OUT IN HIGH LEVEL AND THE
TEAM HAS BEEN REALLY BUSY
EVALUATING THE FEEDBACK WE GOT
AND TRYING TO INCORPORATE IT
INTO THE FINAL STRATEGY AND I
JUST WANT TO NOTE A FEW THEMES
THAT HAVE EMERGED FROM THE
RESPONSES AND THESE INCLUDE
THINGS LIKE STRENGTHENING THE
KNOWLEDGE OR DATABASE ECOSYSTEM,
HELPING TO DEVELOP ROBUST DATA
GOVERNANCE TRANSPARENCY AND
SECURITY WHILE ALSO CONSIDERING
PRIVACY AS PART OF THAT AND
PROMOTING CONSENT.
CREATING AI BEST PRACTICES AND
MODEL SHARING, I MEAN AI SEEMS
TO BE EVERYWHERE BOTH LITERALLY
AND FIGURURAATIVELY AND THIS IS
SOMETHING THAT THEY HIGHLIGHTED
AS A NEED TO REALLY PULL OUT AND
HIGHLIGHT.
AND THEN INSURING DATA
MANAGEMENT AND POLICIES ARE
APPROPRIATE AND CLER AND THEN
ALSO HELPING TO EXPLORE
ADDITIONAL REAL WORLD DATA
RESOURCES EFFORTS AND VARIOUS
DIFFERENT METHODS AND WHERE WE
CAN HELP TO CAPITALIZE AND
INVEST IN HIGH RISK, HIGH VALUE
AI MODELS.
NEXT SLIDE, THANK YOU.
IF WE LOOK AT SOME OF THE WORK
THAT THE SGMRO DOES, THEY WERE
THE RESEARCHERS DIRECTLY IN
THEIR CAREER, NOT JUST PROVIDING
SUPPORT FOR THE RESEARCH ITSELF
BUT THEY LAUNCH BACK IN 2018 THE
SEXUAL AND GENDER MINORITY
RESEARCH INVESTIGATOR AWARDS
PROGRAM WHICH TO DATE HAS
RECOGNIZED EARLY STAGE
INVESTIGATORS, WE'VE MADE REALLY
SUBSTANTIAL CONTRIBUTIONS TO THE
FIELD OF SEX IMRUL AND GENDER
MINORITY HEALTH RESEARCH.
SO THEY EXPANDED IT OUT IN 2019
TO INCLUDE 1 DISTINGUISHED
INVESTIGATOR AWARD, THAT
RECOGNIZES SENIOR LEVEL, CAREER
AND ESTABLISHED INVESTIGATORS
AND BECAUSE THIS WAS SO
SUCCESSFUL, SUCCESS BEGETS
SUCCESS SO NOW THEY'RE EXPANDING
THE PROGRAM TO INCLUDE A
MIDCAREER AWARD.
AND THIS WILL HELP TO RECOGNIZE
EXEMPLARY RESEARCHERS AND ALLOW
US TO HIT THE FULL TRAJECTORY
EARLY AND MIDAND MORE SENIOR
LEVEL CAREER INDIVIDUALS.
AND THE LOCAL IS TO REALLY HELP
FOSTER THAT HIGHLY SKILLED AND
WORKFORCE PER HEALTH RESEARCHERS
AND PRIORITY FOR THEIR STRATEGIC
PLAN EMPLOY THE NOMINATIONS FOR
THE FY24 CYCLE ARE CURRENTLY
UNDER REVIEW AND THEY HOPE TO BE
ABLE TO MAKE AWARDS SOON.
MOW SINCE THE LAST TIME WE MET,
THERE HAVE BEEN SEVERAL NEW
DEVELOP AMS IN OUR EFFORTS TO
SUPPORT THE WHITE HOUSE
INITIATIVE ON WOMEN'S HEALTH
RESEARCH WHICH HAS KEPT US
PRETTY BUSY.
THE OFFICE OF RESEARCH AND
WOMAN'S HEALTH LAWRCHED THE NIH
WOMEN'S HEALTH ROUND TABLE
SERIES WHICH HELP TO RAISE
AWARENESS OF CONDITIONS SPECIFIC
TO WOMEN, CONDITIONS THAT
DISPROPORTIONATELY IMPACT WOMEN
AND CONDITIONS THAT AFFECT WOMEN
DIFFERENTLY.
SO THEY'VE HELD 2 SO PARAND ARE
ABOUT TO HOLD THE THIRD 1 NEXT
WEEK.
SO FAR, THEY'VE HELD EVENTS ON
MENOPAUSE AND MIDLIFE HEALTH AND
ALSO ON ENDOMETRIOSIS AND THE 1
COMING UP NEXT WEEK IS ON
MATERNAL MENTAL HEALTH.
AND THEY HAVE ALSO BEEN TRYING
TO ESTABLISH MECHANISMS THAT
HELP RESEARCHERS BE ABLE TO MORE
EASILY ACCESS VARIOUS DIFFERENT
FUNDING OPPORTUNITIES AND
INFORMATION AND RESOURCES TO
HELP PROMOTE WOMEN'S HEALTH
RESEARCH.
AND 1 OF THE THINGS WE DID WAS
CREATE A NEW ONLINE AS WE CALL
IT A FRONT DOOR WHICH HELPS
CENTRALIZE ALL OF THE FUNDING
OPPORTUNITIES REALLY TO WOMEN'S
HEALTH ACROSS NIH.
NOW RELATEDLY, WE ALSO PUT OUT A
NOTICE OF SPECIAL INTEREST A FEW
MONTHS AGO, BACK IN THE SPRING
THAT ALSO HELPED TO KIND OF TART
TO POOL ALL THESE THINGS
TOGETHER IN AN ESSENTIAL AREA
BUT IT ALSO PROVIDED AN
OPPORTUNITY FOR INSTITUTE ANDS
CENTERS FOR ALL THE INSTITUTES
AND TRUSTEESS TO GO THROUGH AND
UPDATE AND REEMPHASIZE THEIR
PRIORITIES RELATED TO WOMEN'S
HEALTH.
AND LASTLY, LASTLY THERE'S A LOT
OF EFFORTS ONGOING AROUND SMALL
BUSINESS OPPORTUNITIES AND ORWH
AND PARTICIPATING IN THIS
OMNIBUS SOLICITATION FOR SMALL
BUSINESS INNOVATION RESEARCH AND
SMALL BUSINESS TECHNOLOGY
TRANSFER, SBIR, AND STTR
PROGRAMS AND THERE ARE VARIOUS
WEBINARS BEING HELD OVER THE
NEXT SEVERAL MONTHS TO REALLY
TALK THROUGH WHAT THE
OPPORTUNITIES ARE AND HOW PEOPLE
CAN ACCESS RESOURCES AND THAT'S
SOMETHING THAT WE'RE DOING WITH
OUR NIHC OFFICE, THE SMALL
BUSINESS EDUCATION
ENTREPRENEURIAL AND DEVELOPMENT
OFFICE.
SO HOPEFULLY, YOU GUYS CAN CATCH
THE NEXT 1 THAT WILL BE HELD IN
LATE OCTOBER.
NEXT SLIDE.
SO AT THE END OF 2022 IN
DECEMBER OF 2022, THE ACD
WORKING GROUP ON DIVERSITY'S
SUBGROUP ON INDIVIDUALS WITH
DISABILITIES DEVELOPED A REPORT
AND PRESENTED THEM TO THE ACD
WHICH WAS ACCEPTED BY THE ACD
AND SUBSEQUENTLY BY THE ACTING
NIH DIRECTOR AT THE TIME.
AND THE REPORT REALLY FOCUSED ON
HOW BEST TO SUPPORT PEOPLE WITH
DISABILITIES AND MADE VARIOUS
DIFFERENT RECOMMENDATIONS
INCLUDING HOW WE CAN CONDUCT
RESEARCH ON DISABILITY HEALTH
AND HEALTHCARE DISPARITIES AND
EQUITY.
AND IN RESPONSE TO VARIOUS
DIFFERENT RECOMMENDATIONS THAT
WERE INCLUDED IN THE REPORT,
TAKEN SOME STEPS AS AN AGENCY
BUT VERY SPECIFICALLY DPC PSI
HAS BROUGHT ON POLICY RESEARCH
AND EXPERT SERL NOW, WE'RE GLAD
TO WELCOME INCLUDING THOSE WITH
LIVED EXPERIENCE TO HELP
SPEARHEAD THE WORK THAT WE'RE
DOING, NOT JUST ACROSS DPC PSI,
BUT WE'RE DOING THIS FOR ALL OF
NIH AND HELPING TO COORDINATE
AND DEVELOP AN AGENCY-WIDE
STRATEGIC PLAN FOR DISABILITY
RESEARCH.
WORKING OF COURSE WITH THE
PARTNERS ACROSS THE VARIOUS
DIFFERENT INSTITUTES AND CENTERS
WITHIN NIH AND WE EVEN DEVELOPED
AND FORMED AN INTERNAL RESEARCH
COORDINATING EXITEE THAT WILL BE
ABLE TO HELP US FACILITATE THESE
ACTIVITIES.
SO JUST QUICKLY SOME OF THE
VARIOUS EFFORTS THAT WE'RE GOING
TO BE CONDUCTING IS WE'RE
STARTING WITH FIRST PRINCIPLES
AS THEY SAY AND TRYING TO
UNDERSTAND OUR RESEARCH
PORTFOLIO ACROSS NIH.
WE'RE DOING WITH DISABILITY
RESEARCH, THIS IS SOMETHING THAT
WE'RE WORKING WITH OUR OFFICE OF
PORTFOLIO ANALYSIS AND THE
NATIONAL INNSITUTE ON MINORITY
HEALTH AND HEALTH DISPARITIES TO
REALLY BRING TOGETHER.
AND WE KNOW THAT CERTAIN OTHER
INSTITUTES AND CENTERS AND
COMPONENTS OF THOSE HAVE ALREADY
COMPLETED VARIOUS DIFFERENT
ANALYSIS THAT ARE FOCUSED ON
THEIR TOPIC AREAS LIKE NATIONAL
CENTER FOR MEDICAL
REHABILITATION RESEARCH AND WE
WANT TO BUILD OFF THE EFFORTS
THAT ARE ALREADY ONGOING BUT
BROADEN IT OUT ACROSS ALL OF
NIH.
AND SO WE'RE ALSO GOING TO BE
TALKING TO THE LEADERSHIP ACROSS
THE INSTITUTES AND CENTERS TO
UNDERSTAND THEIR PRIORITIES A
LITTLE BIT MORE AND THEIR
RESEARCH GOALS AND THEN THE
CRITICAL, CRITICAL PART OF THIS
WHOLE EFFORT IS TO ENGAGE WITH
THE DISABILITY COMMUNITIES TO
HELP DISCUSS AND HELP US
UNDERSTAND THEIR NEEDS,
CHALLENGES AND THE GOALS.
WE WILL HOST A SERIES OF ROUND
TABLES COMING UP VERY SOON AS
WELL AS ADDITIONAL
OPPORTUNITIES.
SO PLEASE STAY TUNED FOR THOSE
EFFORTS AND FOR MORE INFORMATION
ABOUT THOSE EFFORTS BECAUSE THAT
WILL BE COMING OUT REALLY IN THE
NEXT FEW WEEKS.
AND WE ALSO HAVE SOMETHING THAT
IS I THINK, HOPEFULLY WILL BE OF
INTEREST TO THIS COUNCIL.
WE'RE PROPOSING TO ESTABLISH A
COUNCIL OF COUNCILS RESEARCH
DISABILITY WORKING GROUP OVER
THE NEXT SEVERAL MONTHS MUCH
LIKE WE HAVE WITH OUR SGM
WORKING GROUP THAT IS KIND OF A
STANDING GROUP OF THE COUNCIL OF
COUNCIL AND WHO I HAD THE
OPPORTUNITY TO MEET WITH
YESTERDAY.
SO I WOULD APPRECIATE YOUR
THOUGHTS AND REACTION TO THIS
AND WE WILL PAUSE THE END OF MY
UPDATES IN JUST A MINUTE IF
ANYONE WANTS TO WEIGH IN ON
THAT.
SO IF WE CAN GO TO THE NEXT
SLIDE.
ONE OTHER THING WE'VE BEEN
TALKING ABOUT IS THE TRIBAL
RESEARCH OFFICE THEY'VE BEEN
HELPING US WORK ON A RESEARCH
AND DATA ANALYST SEVERE MITRAL
RINT POLICY, IT WOULD INCLUDE
FUNDING APPROVAL WHEN RESEARCH
IS TAKING PLACE ON TRIBAL LAND
OR MAKES INFERENCE TO A SPECIFIC
TRIBE.
SO HAD IS SOMETHING THAT
[INDISCERNIBLE] HAS BEEN REALLY
ACTIVELY LEADING ON.
THEY HAVE A SESSION THAT'S GOING
TO BE HELD NEXT WEEK, THERE'S A
LOT OF STUFF HAPPENING NEXT WEEK
ON THE 16th AND THAT WILL BE
STREAMED LIVE TO THE PUBLIC, AT
LEAST PART OF IT BECAUSE THEY
WILL HOST A SUMMIT TO HAVE
CONVERSATIONS WITH EXPERTS
ACROSS VARIOUS DIFFERENT FIELDS
TO TALK ABOUT WHAT ARE SOME
CONSIDERATIONS AND KEY
RECOMMENDATIONS THAT WE SHOULD
BE CONSIDERING.
THEY'VE ALSO BEEN HOLDING A
SERIES OF LISTENING SESSIONS TO
HEAR FROM THE COMMUNITY SO THIS
IS NOT THE FIRST OPPORTUNITY FOR
THE VARIOUS DIFFERENT INTERESTED
PARTIES TO CONTRIBUTE BUT IT IS
THE MOST I GUESS UPCOMING 1.
SO SEPTEMBER 16th AND 17th,
MARK YOUR CALENDARS.
ALL RIGHT, AND THEN FINALLY
ANOTHER MARKING THE CALENDARS
MOMENT.
IF WE CAN GO TO THE NEXT SLIDE.
THE OFFICE OF BEHAVIORIAL AND
SOCIAL SCIENCES RESEARCH IS
HOSTING THE NIH BEHAVIORIAL AND
SOCIAL SCIENCES RESEARCH
FESTIVAL.
WE DO THIS EVERY YEAR AND IT IS
CO-HOSTED WITH THE NIH
BEHAVIORIAL AND SOCIAL SCIENCES
RESEARCH COORDINATING COMMITTEE.
IT WILL BE HELD IN NOVEMBER ON
CAMPUS JUST DOWN THE ROAD IN
NATCHER AND IT'S A GREAT
OPPORTUNITY TO PROVIDE AND
HIGHLIGHT THE LATEST OF THE NIH
FUNDED BEHAVIORIAL AND SOCIAL
SCIENCES RESEARCH, TALK ABOUT
IMPACT AND THE IMPORTANCE ACROSS
BIOMEDICAL RESEARCH.
AND ALSO PROVIDES A BROAD VIEW
OF DIVERSE RANGE OF REALLY
OUTSTANDING RESEARCH FROM ACROSS
ALL OF OUR DIFFERENT NIH
INSTITUTES AND CENTERS THAT ARE
GOING TO SHOWCASE AT THIS
FESTIVAL, SO BE ON THE LOOK OUT
BECAUSE REGISTRATION IS COMING
SOON AND I HOPE THAT EVERYONE IS
ABLE TO PARTICIPATE IN THAT.
OKAY, NOW REALLY FINALLY, I SAID
FINALLY LAST TIME, BUT FINALLY
COMING IN FALL, WE WILL BE
STARTING A PILOT PROGRAM TO
BRING TOGETHER SCIENCE OF
SCIENCE SCHOLARS AND BRING THEM
TO NIH AND HAVE THEM HELP US
ANSWER SOME QUESTIONS THAT I
THINK WE ARE AND PROBABLY
BETWEEN US AS WELL.
SO FOR THOSE WHO ARE LESS
FAMILIAR IN THE FIELD OF
CONSCIENCE OF SCIENCE, IT'S A
FIELD THAT ARK PLIES SCIENTIFIC
SCIENCE TO HELP UNDERSTAND THE
SCIENTIFIC FIELD AND AS WE THINK
ABOUT IT FROM A FUNDING
PERSPECTIVE HOW WEB CONNECTED
ACTUALLY SUPPORT THAT SCIENCE.
THE NIH HAS A REALLY LONG
HISTORY OF ENGAGING WITH
RESEARCHERS TO GENERATE EVIDENCE
TO INFORM IMPROVEMENTS TO ITS
VARIOUS DIFFERENT PROGRAMS AND
PROCESSES, AND POLICIES.
IT INCLUDES THINGS LIKE NIGMS'S
SCIENCE TO SCIENCE TO ANALYZING
AND INNOVATING THE BIOMEDICAL
RESEARCH AND ENTERPRISE PROGRAM
AND THEN, MORE RECENTLY, WE HELD
A COLLABORATION WITH OMB, DID A
PILOT PROJECT WHERE WE HAD A
LISTING SESSION AND AN
OPPORTUNITY FOR PEOPLE IN THE
COMMUNITY TO BE REALLY ENGAGED
TO HELP THINK THROUGH AND DESIGN
ANALYTIC APPROACHES TO ANSWER
QUESTIONS FOR THE AGENCY.
SO WHAT WE'RE GOING TO DO, WE'RE
LEVERAGING SOME OF THESE EFFORTS
AND SOME OF THE WORK THAT HAS
BEEN DONE IN THIS SPACE TO BRING
IN EXPERTS IN SCIENCE OF SCIENCE
TO NIH TO WORK REALLY CLOSELY
WITH THROW A FOOTBALL AND HELP
ANSWER SOME OF THOSE CRITICALLY
IMPORTANT QUESTIONS RELATED TO
IMPROVING OUR PROCESSES,
POLICIES AND PROGRAMS.
AND SO SCHOLARS WILL BRING THEIR
TECHNICAL SCHOOLS AND RELEVANT
EXPERTISE AND THINKING THROUGH
THINGS LIKE EVALUATION AND
RESEARCH AND DESIGN METHODOLOGY
TO HELP US WORK CLOSELY WITH
SOME OF THE NIH STAFF TO STUDY
VARIOUS ADMINISTRATIVE AND
SCIENTIFIC PROGRAMS.
AND IT'S GOING TO OFF WE THINK,
A REALLY UNIQUE OPPORTUNITY TO
PRIDE EXPERTS WITH FORMAL AND
CONTROLLED ACCESS TO DATA THAT
IS NOT NECESSARILY AVAILABLE
BROADLY FOR THE PUBLIC.
SO IT CAN HELP US THINK THROUGH
AGAIN VARIOUS DIFFERENT
QUESTIONS THAT WOE HAVE AND WE
KNOW THAT WE HAVE LOTS OF
EXPERTISE AT NIH BUT WE DON'T
HAVE ALL OF IT AND SO, THIS IS
AN OPPORTUNITY TO HELP US
IMPROVE WHAT WE DO.
NOW I WISH I HAD ALL THE TIME IN
THE WORLD BUT MAYBE YOU GUYS
DON'T EMPLOY BUT TO CONTINUE
SHARING ALL OF THE WONDERFUL
DIFFERENT THINGS THAT ARE
ONGOING ACROSS THE DIVISION.
WE HAVE 14 DIFFERENT OFFICES, 2
THAT ARE SORT OF IN THE PROCESS
OF JOINING DPC PSI AND 1 PROGRAM
AND SO THERE IS JUST A TON THAT
IS GOING ON EMPLOY SO THIS JUST
IS THE TIP OF THE ICEBERG BUT I
DO WANT TO PAUSE MAYBE IF
THERE'S ANY COMMENTS OR
QUESTIONS OR REACTIONS TO
ANYTHING THAT WE WENT OVER IN
THIS FIRST LITTLE BIT AND THEN
WE'LL VENTURE INTO THE FIRST
ITEM--FIRST, I GUESS SUBITANTIVE
ITEM ON THE AGENDA.
SO KEVIN?
>> YES, THANK YOU SO MUCH FOR
THE UPDATE,IME REALLY LOOKS
FORWARD TO ACTUALLY READING
THROUGH THE REPORTS, 1 THING I
NOTICED WE HAVEN'T HAD A CHANCE
TO ADDRESS IN DPC PSI THAT'S NOT
COME UP IS THE WHOLE IDEA OF
SCIENCE INITIATIVE, IT WAS A
CONCEPT THAT WAS CLEARED BUT
NEVER GOT FUNDED, HAS THERE BEEN
ANY ARK DITIONAL MOVEMENT THERE.
I SEE THERE'S A SPECIAL INTEREST
GROUP AT THE NIH.
THERE CERTAINLY IS ACTIVITY BUT
I'M WONDERING IF I'M TIME TO
CONSOLIDATE THAT?
>> NOW I WILL BE THE FIRST 1 WHO
FORGET TOTION TURN THEIR MIC ON.
AS YOU SAID, THERE IS DISCUSSION
ACROSS NIH IN TERMS OF
INDIVIDUALS THAT ARE COMING
TOGETHER, EXPERTS IN THIS SPACE
THINKING THROUGH VARIOUS
DIFFERENT QUESTIONS, IT'S
SOMETHING WE TALKED WITH OUR
OFFICE OF BEHAVIORIAL AND SOCIAL
SCIENCES RESEARCH, IT'S A
CRITICAL ELEMENT OF HELPING,
TOO, I THINK PEOPLE ALWAYS COME
BACK TO, IT'S LIKE BUILDING
TRUST WITHIN THE COMMUNITY OR AT
LEAST COMING AT THAT TOPIC FROM
THAT LENS AND SO WHILE NOTHING
IS MOVING FORWARD, NECESSARILY
WITH THAT PARTICULAR PROGRAM,
THERE ARE VARIOUS DIFFERENT, I
WOULD SAY, EARLIER STAGE
CONVERSATIONS THAT ARE ONGOING.
>> IT'S REALLY GRATIFYING TO SEE
THE SUPPORT OF EARLY STAGE
INVESTIGATORS THAT SEEMS TO BE
ACROSS ALL LEVELS OF NIH.
I WOULD SAY THAT IN NIAID IN
PARTICULAR, I KNOW THAT'S JUST
THE FIELD OF THE INFECTIOUS
DISEASE FELLOW APPLICATIONS ARE
GOING DOWN AND WE REALLY DO NEED
THIS AND I KNOW DOCK
[INDISCERNIBLE] HAS TALKED ABOUT
THIS, WE NEED SUPPORT OF EARLY
STAGE INVESTIGATORS IN A VERY
CONCRETE WAY.
THE BEST WAY TO DO THAT IS TO
INCREASE THE PAY LINES FOR
K-AWARDS BECAUSE THAT--ALL OF
THESE SUPPORT PROGRAMS ARE
AMAZING BUT WHEN IT GETS TO THE
TIME OF PUTTING IN THAT GRANT,
AN 18 OR 20 IS VERY LOW PAY LINE
FOR FIRST TIME K-AWARDS AND
WHATEVER WE CAN DO TO HELP
ADVOCATE FOR THAT VERY SPECIFIC
CHANGE WILL BE HELPFUL.
>> GREAT.
THANK YOU.
YEAH, THAT GOING TO BE A
CRITICAL PIPELINE FOR JUST THE
FUTURE OF BIOMEDICAL RESEARCH.
AS I'M SURE YOU ALL KNOW, THAT
WAS SOMEWHAT--IT'S RELATED
THINKING, I GUESS IN SOME OF THE
WORK WE'VE DONE AROUND POST DOCS
IN TERMS OF SUPPORT AND OTHER
WAYS TO HELP GROW THAT EARLIER
TAIJ PIPELINE NTHOSE T32S ARE
NEW AT THE K-STAGE AND IT'S
JUST--I MEAN YESTERDAY SOMEONE
SAT IN MY OFFICE SAID I CAN'T DO
IT, I CAN'T WRITE A K, I'M TOO
SCARED.
AND HE WAS JUST ABOUT TO WRITE A
K, BUT IT'S THAT BRANCH POINT,
THAT'S YOUR ENTRY INTO THE GOAL
TOWARDS INDEPENDENCE IS THE K.
>> I THINK RHONDA AND THEN--
>> YES, THANK YOU.
I WANT TO ALWAYS APPLAUD THE NIH
IN TERMS OF INVOLVING
COMMUNITIES IN THE CONCEPTS THAT
YOU BRING FORWARD AND THE
PROGRAMS.
BUT I'M WONDERING CAN YOU DEFINE
WHAT YOU MEAN BY COMMUNITY?
IT'S REAL CLEAR THAT YOU BRING
IN PEOPLE WHO ARE ENGAGED IN
TERMS OF HAVING A LIVED
EXPERIENCE, OR ORGANIZATIONS
THAT WORK WITH INDIVIDUALS IN
THAT AREA ISSUES BUT I'M
WONDERING WHETHER OR MOT AS PART
OF THE COMMUNITY, YOU ARE
INCLUDING THOSE WHO ARE SERVICE
PROVIDERS TO THAT COMMUNITY
BECAUSE THE SYSTEM THAT OPERATES
WITHIN THAT COMMUNITY THAT HELPS
TO MAKE OR BREAK THE ABILITY FOR
ALL THESE THINGS TO WORK AND THE
OTHER HAS TO DO WITH FUNDING
AGENCIES WHETHER IT'S PAYERS OR
WHETHER IT'S OTHER GOVERNMENTAL
AGENCIES THAT COULD POSSIBLY BE
ABLE TO FOCUS IN OR CONSOLIDATE
OUR TARGET MORE EFFECTIVELY
THESE TYPES OF INITIATIVES SO
THAT THERE'S MORE POWER AROUND
HAVING ALL OF THEM WORKING IN
SYNCHRONY TOGETHER.
>> TO GET GOING AND BUILD OFF
WHAT YOU SAID, WHEN WE TALK
ABOUT COMMUNITY WE USE THAT TERM
VERY BROADLY AND IT CAN MEAN
DIFFERENT THINGS DEPENDING ON
THE CONTEXT WE'RE USING IT IN
AND SO 1 EXAMPLE OF PULLING AND
PROVIDERS AND OUR CARE FOR
HEALTHCARE PROGRAM THAT WE'RE
BUILDING OUT, OUR PRIMARY CARE
RESEARCH OPPORTUNITY FOR
INDIVIDUALS AND REALLY TRYING TO
ENGAGE THE PRIMARY CARE
PROVIDERS THEMSELVES AS PART OF
THE PROCESS ACTIVELY.
RUSS?
>> I REALLY WANT TO APPLAUD THE
DISABILITY RESEARCH EMPHASIS
THAT CONSTITUENCY THAT HAS NOT
HAD GREAT REPRESENTATION WITHIN
NIEKS H AND COORDINATION AS PART
OF DPC PSI'S MISSION, I AM
CURIOUS WHAT THE CHARGE WILL BE
TO THE COUNCIL OF COUNCILS
WORKING GROUP IN THIS AND HOW WE
CAN PLAY A ROLE IN DEVELOPING
THIS CONCEPT?
>> YEAH, WE'RE STILL WORKING ON
THAT.
WE DON'T EVEN HAVE A DRAFT YET,
BUT YOU KNOW I THINK 1 OF THE
OPPORTUNITIES THAT WE HAVE WITH
THE DISABILITY RESEARCH
PORTFOLIO IS THAT THIS IS REALLY
THE FESTER TIME THAT WE HAVE HAD
A COORDINATED EFFORT ACROSS NIH
TO EXAMINE THE PORTFOLIO AND
IT'LL BE A GREAT OPPORTUNITY TO
BRING TOGETHER INDIVIDUALS WHO
ARE EXPERTS IN VARIOUS DIFFERENT
FACETS OF DISABILITY RESEARCH
WHETHER THAT BE LIVED EXPERIENCE
AND PARTICIPATE NOTHING STUDIES
OR AS RESEARCHERS OR MANY OTHERS
ACROSS THAT SPECTRUM AND HAVE
THEM BE ABLE TO WEIGH IN ON SOME
OF THE THINGS THAT 1 WE'RE
HEARING BROADLY FROM THOSE
LISTENING AND ROUND TABLE
SESSIONS I MENTIONED AND ALSO
SOME OF THE THINGS WE'RE
THINKING ABOUT IN TERMS OF OUR
RESEARCH PORTFOLIO AS WE LOOK
MORE CLOSELY AT OUR PORTFOLIO
ITSELF AND THE PRIORITIES FROM
ACROSS THE INSTITUTES AND
CENTER, SO IT WILL BE AN
OPPORTUNITY TO JUST KEEP SAYING
OPPORTUNITY BUT REALLILY IS.
THAT'S HOW WE'RE LOOKING AT IT
TO BRING TOGETHER FOLKS AND HELP
US GUIDE AND INFORM THAT
STRATEGIC PLAN AS A FIRST STEP
AND THEN WE ALSO THEN NOW HAVE
TO--AFTER WE PUT TOGETHER A PLAN
WE ALSO HAVE TO THINK ABOUT HOW
WE'RE GOING TO IMPLEMENT THAT.
SO I THINK THERE WILL BE
OPPORTUNITIES THAT TO BE IN
THERE.
OKAY I'M NOT SEEING ANY OTHER
ACTIVE HANDS SO WITH THAT I WILL
MOVE ON TO OUR NEXT AND REALLY
FIRST CONCEPT CLEARANCE WHICH IS
A REISSUE OF A PROGRAM THAT
HOPEFULLY YOU ALL ARE FAMILIAR
WITH.
SO FIRST UP IS THIS CONCEPT
CLEARANCE FROM OUR OFFICE OF
RESEARCH INFRASTRUCTURES
PROGRAMS AND DR. BETTINA BUHRING
IS GOING TO GIVE US AN OVERVIEW
OF THE CONCEPT.
TINA IS A PROGRAM DIRECTOR IN
THE COMPARATIVE MEDICINE, AND
ORIP, AND WE WILL HEAR FROM
DR. SUSAN SANCHEZ AND RUSS, AND
BETTINA, I WILL TURN IT OVER TO
YOU.
>> GREAT.
THANK YOU CAN YOU HEAR ME?
GOOD.
I'M BETTINA PUHRING, PROGRAM
DIRECTOR, DIVISION OF OFFICE OF
COMP PARAATIVE MEDICINE AND
ORIP.
SO I WILL PRESENT THIS CONCEPT
CLEARANCE WHICH WILL BE A
REISSUE OF THE NATIONAL PRIMATE
RESEARCH CENTER'S PROGRAM.
FOR THE NPRCs, THE OBLIGATIONS
YECTIVE IS TO ENHANCE SCIENTIST
CAPABILITIES TO CONDUCT RESEARCH
WITH NONMUSEUM MAN PRIMATES BY
PROVIDING ANIMALS,
STATE-OF-THE-ART FACILITIES AND
SCIENTIFIC AND VETERINARY
EXPERTISE.
UP TO 7 PRIMATE RESEARCH CENTERS
WILL BE FUNDED THROUGH THIS
PROGRAM DEPENDING ON NIH
APPROPRIATIONS AND THE OWARD
PROJECT PERIOD FOR EACH WILL BE
5 YEARS.
THE COUNCIL ACTION WILL ASK YOU
TO TAKE AT THE END OF MY
PRESENTATION WILL BE TO VOTE FOR
APPROVAL OF THE CONCEPT FOR THE
NATIONAL PRIMATE RESEARCH
CENTERS PROGRAM.
SO BRIEFLY CONGRESS PASSED
LEGISLATION IN THE 1960S TO
CREATE THE NATIONAL PRIMATE
RESEARCH CENTERS AND THESE
CENTERS SUPPORT BIOMEDICAL
RESEARCH USING NONMUSEUM MAN
PRIMATES, WHILE PROVIDING
STATE-OF-THE-ART FACILITIES,
ADVANCE EQUIPMENT, ANIMAL AND
BIOMATERIAL RESOURCES, EXTENSIVE
TRAINING PROGRAM AND THEY
PROVIDE SCIENTIFIC AND
VETERINARY EXPERTISE.
AS YOU CAN SEE HERE ON THIS MAP,
THE NPRCs ARE DISTRIBUTED
THROUGHOUT THE COUNTRY AND THERE
ARE CENTERS IN WISCONSIN, IMA
GATE KEEPER, LOUISIANA, TEXAS,
CALIFORNIA, OREGON AND
WASHINGTON STATE.
THE PURPOSE OF THE NPRCs IS TO
ROUGH ATOM VIED STATE-OF-THE-ART
FACILITIES, SERVICES AND
EXPERTISE AND THEY DO THIS BY
CHARACTERIZING WELL KNOWN
NONHUMAN PRIMATES, THEY HAVE A
PEDIGREE, KNOWN GENETIC ANDS
THEY CAN BE SPECIFIC PATHIEN 3
OR SPF WHICH IS ESPECIALLY
IMPORTANT FOR INFECTIOUS DISEASE
RESEARCH.
THEY ALSO PROVIDE A LOT OF
RESOURCES INCLUDING ADVANCED
CAPABILITIES, DIAGNOSTICS
REAGENTS AND ASSAY SERVICES.
THE NPRCs SUPPORT RESEARCH
FIELDS ACROSS PRETTY MUCH THE
ENTIRE BIOMEDICAL COMMUNITY AND
THEY DO THIS IN SEVERAL
DIFFERENT WAYS SO 1 IS TO IDENT
PIE AND DEVELOP NEW NONHUMAN
PROMULGATATE MODELS OF DEC SO
THEY CAN IDENTIFY GENOMIC
SEQUENCING OF THE ANIMALS IN THE
EXISTING COLONIES AND THEY CAN
DEVELOP NEW NONHUMAN PRIMATE
MODELS IN INFECTIOUS DISEASES OR
GENE EDITING TOOLS TO CREATE NEW
MODELS OF HUMAN GENETIC
DISORDERS, THEY ALSO FACILITATE
PILOT PROJECT WHICH IS IS
IMPORTANT FOR NEW INVESTIGATORS
OR VERY LONGS VERY LONGS WHO AO
NONHUMAN PRIMATE RESEARCH, THIS
ALLOWS THENL TO GENERATE
PRELIMINARY DATA FOR GRANT
APPLICATIONS MRIIDATIONS.
THEY ALSO PROVIDE OUTREACH FOR
RESEARCHERS AND THE PUBLIC AND
PROVIDE TRAIN NOTHING NONHUMAN
PRIMATE RESEARCH METHODS.
SO THEY PROVOID ONLINE
RESOURCES, NPRC RESEARCH.ORGFOR
EXAMPLE IS FOR INVESTIGATORS AND
THEIR LABERATORS CAN THEN
NPRC.ORGCAN A WEBSITE FOR
EDUCATORS FOR THE PUBLIC, FOR
MIA AND POLICY MAKERS AND THIS
HAS INFORMATION ON THE NPRC'S
MISSION AND HISTORY AND PROVIDES
SCIENCE HIGHLIGHTS.
SO THESE ARE JUST A SMALL
SEGMENT OF THE OUTREACH THEY DO.
THEY ALSO HAVE THEIR OWN WELL
DEVELOPED PROGRAMS OF OUTREACH
SO FOR EXAMPLE, THEY CAN DO
TOURS FOR THE PUBLIC ESPECIALLY
THOSE THAT HAVE OUTDOOR
FACILITIES, THEY INVITE SCHOOL
CLASSES TO VISIT AND THEY ALSO
HAVE SUMMER PROGRAMS FOR HIGH
COOL SCIENCE TEACHERS TO COME
AND LEARN.
SO THE NPRCs HAVE A LOT OF
RESOURCES AVAILABLE, I AM
LISTING A FEW OF THEM HERE
EMPLOY 1 OF THEM IS THE
BIOMATERIALS QUERY SYSTEM, OR
THE BQS, THIS IS A COMPREHENSIVE
OF THE BIOMATERIALS AVAILABLE AT
THE NPRCs AND IT ALLOWS
REQUESTING SPECIFIC TISSUES
THROUGH A SECURE ONLINE
PLATFORM, THE NPRCs, THERE ARE
7 OF THEM, THEY FORMED A
CONSORTIUM, AND UNDER THAT
UMBRELLA THEY FORMED STEAN WORKS
GROUPS, I'M NOT LISTING ALL OF
THEM HERE, JUST 4 AS EXAMPLES
AND THESE WORKING GROUPS CAN BE
BASED ON RESEARCH TOPICS, OR
THEY CAN BE BASED ON RESEARCHES
RELATING TO THE DAY-TO-DAY
MANAGEMENT OF A LARGE ANIMAL
RESEARCH FACILITY SO SOME XCHS
OF THE RESEARCH FOCUSED TOPICS
ARE AGING RESEARCH WORKING
GROUP, THE INFECTIOUS AND
EMERGING DECS WORKING GROUP
WHICH WAS VERY ACTIVE DURING
COVID OF COURSE.
THERE'S ALSO THE GENETICS
GENOMICS AND NEW MODEL
DEVELOPMENT WORKING GROUP AND
THEN AS AN EXAMPLE OF A WORKING
GROUP THAT'S MORE RELATED TO THE
DAY-TO-DAY OPERATIONS OF
AN ANIMAL FACILITY 1 EXAMPLE IS
A BRING COLONY MANAGEMENT
WORKING GROUP AND I SHOULD ALSO
MENTION THESE WORKING GROUPS
SERVE NOT ONLY TO BRING TOGETHER
INVESTIGATORS AND THROW A
FOOTBALL FROM THE 7 NPRCs BUT
THEY ALSO SERVE AS A NATIONAL
FORUM BECAUSE THEY BRING
TOGETHER PEOPLE FROM SOME OTHER
NHP CENTERS FROM ACROSS THE
COUNTRY.
SO THEY SERVE TO DISCUSS BEST
PRACTICES AND TO DISCUSS ANY
ISSUES THAT MIGHT COME UP.
ANOTHER RESOURCE THAT'S
AVAILABLE AT THE NPRCs IS THE
MACAQUE GENO TYPE AND PHENOTYPE
RESOURCE OR MGAP.
THIS IS A VERY LARGE DATABASE
THAT HAS GENOTYPIC AND
PHENOTYPIC DATA FROM ABOUT 3000
RHESUS MACAQUES AND LOCATED IN 9
DIFFERENT CENTERS, AND ABOUT 80
NATURALLY OCCURRING GENETIC DEC
MODELS.
THIS IS A SNAPSHOT OF THE
NPRCs FOR THE LAST YEAR OF
FISCAL YEAR 2023, THE LAST YEAR
WE HAVE COMPLETE DATA.
SO OVER 800 RESEARCH PROJECTS
WERE SUPPORTED.
OVER 1700 INVESTIGATORS WERE
CERTIFICATED AND MOTE OF THESE
WERE NOT NFRC AFFILIATED.
ABOUT 2000 NONHUMAN PRIMATES
WERE ASSIGNED TO STUDIES.
OVER 85,000 SAMPLES WERE
DRIEWBTED, MORE THAN 400
PUBLICATIONS WERE RELEASED AND
OVER 600 TRAINEES WERE SUPPORT.
SO CAN YOU SEE THEY HAVE A
PRETTY BROAD REACH.
THIS SLIDE PROVIDES AN OVERVIEW
OF THE BREDTH OF RESEARCH THAT
THE NPRCs SUPPORT.
THIS WAS AGAIN FOR FISCAL YEAR
2023.
YOU CAN SEE THE LARGEST CATEGORY
WAS FOR HIV/AIDS RESEARCH, AND
THIS IS BECAUSE THE NPRCs
RECEIVE SIGNIFICANT CO FUNDING
FROM THE OFFICE OF AIDS RESEARCH
WITHIN NIH.
THIS CATEGORY IS FOLLOWED BY
BEHAVIORIAL AND SYSTEMS
NEUROSCIENCE, THEN VIRAL AND
INFECTIOUS DISEASES,
REPRODUCTIVE HEALTH, MOLECULAR
NEUROSCIENCE AND YOU CAN SEE THE
LIST ON THERE, AND THERE'S MORE
I'M NOT LISTING ON THE SLIDE
BECAUSE THERE'S TOO MANY TO FIT.
SO OVERALL CAN YOU SEE THAT THE
BREDTH OF RESEARCH IS VERY BROAD
AND EVEN EACH OF THESE
CATEGORIES ARE VERY, VERY WIDE
CATEGORY SO FOR EXAMPLE,
REPRODUCTIVE HEALTH HAS A LOT OF
SUBAREAS, AS DO MATERIAL AND
INFECTIOUS DECS RESEARCH.
THIS SLIDE IS JUST INTENDED TO
REMIND ME TO LET YOU KNOW THAT
THE NPRCs ALSO LEVERAGE THE
BASE GRAND FUNDING AND THENAC
TRACT FUND FREE RADICALS
GENERATED EVERGHT AREAS SUCH AS
A HOST INSTITUTION, OR FROM
OTHER PROGRAM INCOME.
AND WITH THAT, I WOULD LIKE TO
ASK FOR YOUR VOTE FOR APPROVAL
FOR THE CONCEPT FOR THE NATIONAL
PRIMATE RESEARCH CENTERS
PROGRAM.
AND I WOULD BE HAPPY TO TAKE ANY
QUESTIONS.
>> BEFORE WE JUMP INTO QUESTIONS
FOR BETTINA, WE WILL TURN IT
OVER TO DR. SANCHEZ AND
VANGUILDER, FIRST SO SUSAN?
>> THANK YOU.
THANK YOU FOR YOUR INTRODUCTION,
NICE TO MEET YOU.
SO SEVERAL AND IN THE MOST
RECENT PUBLISHED THIS YEAR, WE
HAVE SHOWN THAT NONHUMAN
PRIMATES ARE STILL CRITICAL FOR
OUR NATIONAL RESEARCH, INCREASE
THE DEMAND FOR MACAQUES AND
MARMOSETS ARE [INDISCERNIBLE]
FOR THE BIOMEDICAL RESEARCH
ENTERPRISE, RECENT ISSUES WITH
AVAILABILITY TO THE
IMPLEMENTATION AND
[INDISCERNIBLE] HAVE MADE THIS
POINT ACROSS MANY LEVELS OF
SOCIETY.
SO WE'LL BE DISCUSSING THESE
ISSUES MOSTLY SINCE COVID.
SINCE IMPLEMENTATION, THE
NATIONAL PRIMATE RESEARCH
CENTERS HAVE BEEN ESSENTIAL
RESOURCES FOR MANY RESEARCHERS,
PARTICULARLY THOSE REQUIRE
ACCESS TO NONHUMAN PRIMATES,
CAPABLE, [INDISCERNIBLE]
NONHUMAN PRIMATES CAPABILITY
FACILITY WITHIN THE ORGANIZATION
EMPLOY THESE CENTERS OFFER
RESEARCH CAPABILITIES NOT
COMMONLY FOUND ELSEWHERE, THEY
CAN SUPPORT STUDIES REQUIRING
LARGE NUMBERS OF ANIMALS.
THE VETERINARY SUPPORT
PROCEDURES ARE AVAILABLE AT THE
NATIONAL PRIMATE RESEARCH
CENTERS ARE UNIQUE AND
COMPREHENSIVE AND ALLOW FOR THE
TRAINING OF FUTURE VETERINARIANS
AND VETERINARY SCIENTISTS WHO
ARE SPECIALIZE IN THE CARE OF
PRIMATES AS WELL AS FOR
RESEARCHER WHO IS SPECIAL IEOF
THE IN [INDISCERNIBLE] NONHUMAN
PRIMATES.
OVER THE COURSE OF 1 YEAR THEY
HAVE SUPPORTED [INDISCERNIBLE]
TRAINEES WHICH IS FANTASTIC.
ALTERNATIVES EXIST FOR SOME
RESEARCH TYPE ANDS SPECIES, AND
THE CENTERS ARE A MAGGOR SOURCE
FOR MANY INVESTIGATORS.
THE NATIONAL PRIMATE RESEARCH
CENTERS HAVE SUPPORTED PRIMARILY
INFECTIOUS DISEASES INCLUDING
HIV/AIDS AS WELL AS BEHAVIORIAL
AND ASSISTANCE NEUROSCIENCES.
[INDISCERNIBLE] WORK AS THE
BREDTH WORK SPANS
DEVELOPMENTAL--OKAY, I CAN'T
EVEN READ WHAT I WROTE BUT I
THINK WHAT'S IMPORTANT IS THAT
IT REACHES FUNDAMENTAL
TRANSLATIONAL RESEARCH.
SO I WHOLE HEARTEDLY SUPPORT THE
NPRC RESEARCH PROGRAM HOWEVER I
DO HAVE QUESTIONS THAT I NEED
ADDRESSING.
THE FUNDING FOR SOME OF THE
CENTERS, THE P51 IS
SIGNIFICANTLY SMALLER THAN OTHER
SUPPORT PROVIDED.
THIS DISPARITY OF FUNDING BEING
AFFECT THE VIABILITY AND I
CLEARLY DO NOT UNDERSTAND HOW
THEY ARE SUPPORTED.
AND I'M ALSO CONCERNED ABOUT
INFRASTRUCTURE FOR AGING
FACILITIES, HOW DOES THAT
FUNDING ALLOW FOR IMPROVEMENT OF
THE FACILITIES AND THE
[INDISCERNIBLE] OF THE PROGRAMS.
AND FINALLY, IN 1 OF YOUR SLIDES
YOU MENTIONED A WEBSITE, BUT IN
NEITHER THE WEBSITES NIH IS
MENTIONED OR NIH SUPPORT AND THE
WEBSITE THAT ADDRESSES ISSUES
THAT IS FOR THE RESEARCHERS IS
OUT OF DATE ON THE INDIVIDUAL
WEBSITES SEEM TO BE VERY GOOD IN
COORDINATING WEBSITE IS NOT SO
UPTO DATE.
SO I THINK WE HAVE SOME THINGS
TO--AT LEAST I NEED CLARIFYING
AND I TRULY BELIEVE THIS IS A
WONDERFUL PROGRAM IF WE WANT TO
MAINTAIN OUR RESEARCH EXCELLENCE
AT A NATIONAL LEVEL, WE NEED A
NATIONAL PRIMATE RESEARCH
CENTERS BUT I WOULD LIKE TO HEAR
WHAT YOU HAVE TO SAY ABOUT THOSE
QUESTIONS.
>> SHOULD I RESPOND NOW?
>> YEAH.
>> OKAY, SO THANK YOU FOR
POINTING THAT OUT ABOUT THE
WEBSITES, SO OAR HAS IT'S OWN
WEBSITES, WE CAN PROVIDE THOSE
AND THEN THE NPRCs WEBSITES
ARE BEING UPDATED SO THAT WAS A
GOOD CATCH, YES.
SO IN TERMS OF INFRASTRUCTURE,
THEY CONSTANTLY NEED RENOVATIONS
AND THEY CAN APPLY FOR
SUPPLEMENTS, SOME OF THEM HAVE
BEEN AWARDED, SO THAT'S ALSO
ONGOING.
AND THEN, I THINK YOUR OTHER
QUESTION IS ABOUT HOW THEY GET
FUNDING.
COULD YOU ELABORATE ON THAT IN.
>> SO MY QUESTION IS WHEN YOU
LOOK AT 1 OF YOUR SLIDES AND YOU
LOOK AT THE PERCENTAGE OF
FUNDING THAT THE INSTITUTIONS
PROVIDE OR THE INSTITUTIONS
THEMSELVES PROVIDE IN THE AMOUNT
OF THE FUNDING WITH THE P51 IS
REMARKABLILY SMALL THE AMOUNT OF
MONEY SUPPOSEDLY FROM THE P51
AND THAT MIGHT IN SOME SITUATION
MAKE AN INSTITUTION DESIGH THEY
MIGHT NOT WANT TO SUPPORT THE
PROGRAM OR I DON'T KNOW.
HOW--
>> YEAH THAT HAVE DIFFERENT
STRUCTURES FOR DEMONSTRATING
PROGRAM INCOME, SO THAT DEPENDS
ON THE INSTITUTION, THE NPRCs,
A LOT OF HOST INSTIEWGS PROVIDE
FUNDS FOR THEM AND ALMOST ALL OF
THEM DO BUT IT VARIES ACROSS
CENTERS.
>> RUSS?
>> THANK YOU ALSO DR. BUHRING, I
FULLY CONCUR WITH DR. SANCHEZ'S
COMMENTS.
I AM HIGHLY SUPPORTIVE OF THIS
PROGRAM.
NONHUMAN PRIMATE RESEARCH HAS
BEEN CRITICAL TO SOME OF THE
MOST IMPORTANT ADVANCES IN
MEDICINE AND PUBLIC HEALTH OVER
THE LAST 4 DECADES.
I THINK LOOKING BACK THE FIRST
EVIDENCE THAT THE COVID VACCINE
WAS EFFECTIVE WAS PUBLISHED IN
JULY OF 2020 BASED ON NONHUMAN
PRIMATE RESEARCH AND THAT WAS
LESS THAN 6 MONTHS REALLY AFTER
THE IDENTIFICATION OF THE VIRUS
AND THE ONLY REASON THAT THINGS
COULD MOVE THAT QUICKLY IS
BECAUSE OF THE ROBUST
INFRASTRUCTURE IN SPECIFIC
PATHOGEN FREE NONHUMAN PRIMATES
THAT ALLOWED THAT WORK TO MOVE
AT THAT SPEED.
HIV FROM MY OWN CAREER HAS GONE
FROM THE UNIVERSALLY FATAL
DISEASE OF YOUNG PEOPLE TO A
MANAGEABLE LONG-TERM DISEASE,
AGAIN THROUGH NONHUMAN PRIMATE
RESEARCH, AND I KNOW A LOT OF MY
COLLEAGUES ARE HIGHLY RELIANT ON
TISSUE DISTRIBUTION PROGRAM FOR
UNDERSTANDING VISUAL PHYSIOLOGY
FOR EXAMPLE, THESE ARE JUST
EXPERIMENTS THAT CAN'T BE DONE
IN ANY OTHER SYSTEM AND ARE
CRITICAL TO ADDRESSING
CHALLENGES IN VISION LOSS FOR
EXAMPLE.
THE NHRPs HAVE BEEN CRITICAL
TO THIS, THEY ARE CLEARLY THE
LEADING CONSORTIUM IN TERMS OF
NONHUMAN PRIMATE RESEARCH IN THE
U.S. AND I FULLY SUPPORT THE
RENEWAL.
I ALSO HAVE A FEW QUESTIONS
ALONG THE LINES OF DR. SANCHEZ'S
QUESTIONS, THE RELATIONSHIP
BETWEEN THE NIH AND THE NATIONAL
PRIMATE RESEARCH CENTER SYSTEM
NOT ENTIRELY CLEAR TO ME.
AGAIN, IF YOU GO TO THE NHR P OR
THE NATIONAL NONHUMAN PRIMATE
CENTER WEBSITES THERE'S NO
MENTION OF NIRE H, AND THE NIH
IS PROVOIDING A MINORITY OF
SUPPORT FOR THESE CENTERS
ACCORDING TO THE BAR GRAPH WITH
THE EXCEPTION OF THE UC DAVIS
CENTER, AND SO THE GOVERNANCE OF
THESE BODIES AND IN PARTICULAR,
THEIR COORDINATION WITH THE
LARGER RESEARCH COMMUNITY IN
NONHUMAN PRIMATE RESEARCH IS A
LITTLE UNCLEAR TO ME.
THE REPORTS THAT WE HEARD IN THE
INITIAL SESSION THAT HAVE JUST
COME OUT IN TERMS OF STRATEGIC
PLAN FOR NONHUMAN PRIMATE
RESEARCH, I HAD A CHANCE TO PULL
THOSE DOWN QUICKLY AND THE FIRST
RECOMMENDATION OF THE PANEL WAS
TO ESTABLISH A TRANSNIH NHP
WORKING GROUP TO COORDINATE AND
MANAGEMENT PROCESSES AND NHRP
FUNDING STUDIES, AND THE SECOND
WAS TO INCREASE FUNDING LEVELS
FOR NHRP AND ALL WHICH FALL
UNDER THIS PROGRAM AND THE
FOURTH WAS TO PROVIDE RESOURCES
TO EXPABD COLONIES OF RHESUS
MACAQUES AND ADDRESS ISSUES FOR
IMPORTATION OF ANIMALS, LOCAL
BREEDING, ET CETERA.
SO THE QUESTION IS THIS ROLE
WITHIN THE LARGER NHRP COMMUNITY
AT N- H WILL THIS BE A
LEADERSHIP ROLE, FOLLOWING ROLE
AND HOW WILL THE PROGRAM BE
RIGHT SIZED TO ACCOMMODATE THE
LARGER SECTIONS OF THE NIH WIDE
WORKING GROUP IN NONHUMAN
RESEARCH.
NIT'S A GOOD 1.
I'M DPLAD YOU BROUGHT IN THE
REPORT AS WELL BECAUSE IT HAS A
LOT OF IMPORTANT DATA IN IT.
SO THE NPRCs ARE ONLY 1 PART
OF THE ENTIRE ECOSYSTEM ACROSS
THE U.S. AS YOU KNOW SO RIGHT
NOW WE'RE JUST FOCUSING ON THE
NPRC PROGRAM SO WHETHER THERE'S
GOING TO BE HIGHER LEVEL
COORDINATION OF SOMETHING LIKE
THAT, THAT WILL BE DECIDED AT A
LATER DATE.
SO CURRENTLY WHAT WE'RE
DISCUSSING JUST NOW IS THE
NPRCs THEMSELVES, SO THAT'S
ALL I CAN SAY AT THE MOMENT
NRUSS IF I COULD JUST
CERTAINLY--CERTAINLY LABERATE A
LITTLE BIT FURGT OR THAT, SO
BETTINA'S TALKING ABOUT IS THE
WORK THEY'RE DOING IN ORIP
AROUND THE NPRCs, MORE BROADLY
IS WERE YOU AWARE ASKING WHAT
ARE DOING ACROSS NIH TO HELP
COORDINATE ALL THESE VARIOUS
EFFORTS AND WE DO HAVE AN
INTERNAL GROUP THAT WE AT DPC
PSI LEAD TO BRING TOGETHER ALL
THE INSTITUTES, CENTERS AND ALL
THOSE WHO PARTICULARLY HAVE
VARIOUS DIFFERENT RESOURCES AND
INTERESTS IN UTILIZING NONMUSEUM
MAN PRIMATES IN RESEARCH AND TRY
TO HELP BETTER COORDINATE OUR
EFFORTS AND OUR WORKING ON
VARIOUS DIFFERENT ACTIVITIES AND
CURRENTLY TO BE ABLE TO EXPAND
UPON THAT FURTHER.
WE ALSO WORK ACROSS THE INNER
AGENCY ACROSS THE FEDERAL
GOVERNMENT AND WE HAVE REGULAR
CONVERSATIONS AND CONNECTIONS
WITH INDIVIDUALS ACROSS HHS, AND
D.O.D. AND PROBABLY WILL BE
EXPANDING THAT OUT EACH FURTHER
GOING FORWARD.
WE ALSO JUST THIS PAST SUMMER
AND NOW I'M GOING TO BLANK ON
WHEN IT WAS BUT SOMETIME IN THE
SUMMER WE HELD NIH COORDINATED,
HELP TO LEAD THE COORDINATION OF
AN INNER AGENCY GROUP TO CONVENE
ALL OF THE PARTNERS ACROSS THE
FEDERAL AGENCY TO REALLY HAVE
KIND OF A DEDICATED DAY WHERE WE
SAT DOWN AND TALKED ABOUT LIKE
WHAT THE VARIOUS DIFFERENT NEEDS
WERE WITH THE CHALLENGES WERE,
SO, WE HAVE A NUMBER OF
DIFFERENT EFFORTS THAT ARE
ONGOING TO HEAD UP SOME OF THOSE
COORDINATION AND SHARING BOTH OF
DATA BUT ALSO OF VARIOUS
DIFFERENT INFORMATION SOURCES
ACROSS NIH AND THE FEDERAL
GOVERNMENT.
>> GREAT.
THE FOLLOW ON IS AGAIN VERY
SUPPORTIVE OF THE RENEWAL OF
THIS PARTICULAR CONCEPT
CLEARANCE BUT IT DID SEEM LIKE
THERE'S A LOT OF MOVING PARTS
AND FOR EXAMPLE, I KNOW THE VA,
SPEAKING OF D.O.D., BASICALLY
SHUT DOWN ALL NONHUMAN PRIMATE
RESEARCH OF 2026 WHICH WILL
INCREASE DEMANDS I THINK ON
THESE PROGRAMS TO ACCOMMODATE
SOME OF THAT WHEN THE--REMEMBER
IN 2015 WHEN THE NEW ENGLAND
CENTER CLOSED, THAT HAD A RIPPLE
EFFECT ACROSS THE COUNTRY SO I
JUST--I THINK THIS COUNCIL
AAPPRECIATES THE ASSURANCE THAT
THE ROLE OF THE THIS PROGRAM
WITHIN THE LARGER NHP
ENVIRONMENT IS FRONT AND CENTER.
I THINK THERE SHOULD BE A
LEADERSHIP ROLE WITHIN THIS
GROUP WITHIN THAT COORDINATION
EFFORT.
>> OSC, ALREADY THE START OF A
HAND GOING UP SO THE NEXT THING
WE'RE GOING TO DO WAS TO OPEN IT
UP TO THE REST OF THE COUNCIL
MEMBERS SO LAUREN, YOU'RE THE
FIRST 1 THAT I SAW, SO, WE WILL
START--
>> YOU'RE LOOKING IN MY
DIRECTION.
THANK YOU.
WE ALSO HAD DISCUSSION HERE
ABOUT INCREASING THE USE OF
ALTERNAVE METHODS ACROSS NIH XI
WOULD LIKE TO HEAR ABOUT HOW YOU
THINK ABOUT THE FUTURE OF THIS
PROGRAM IN LIGHT OF WHAT WE ALSO
THINK WILL BE AN INCREASING USE
OF ALTERNATIVE METHODS TO
SUPPORT RESEARCH.
>> YEAH, SO THAT'S A GREAT
QUESTION, SO THE NPRCs ARE
HEAVILY INROFUL INDEED THAT
ALREADY.
I KNOW SOME OF THEM ARE
DEVELOPING ORGAN NPRC ARE
DEVELOPING LIPID NANO PARTICLES
IF ARE THAT AREA, THERE'S ALSO
INTEREST IN AI OF COURSE WHICH
IS EVERYWHERE AND YOU KNOW THEY
HAVE RESEARCH OFFICE OTHER
PROGRAMS THAT, WELL THEY'RE
TRYING TO VALIDATE THEM NOW WITH
THE RESEARCH AND THE NHRPs, I
THINK THEY THAT'S THE UNIQUE
NEED THEY COULD FILL HERE.
GOOD POINT.
>> GREAT.
YEAH, WE HAVE A LOT OF DIFFERENT
EFFORTS ONGOING AND I WAS
LOOKING TO SEE IF 1 OF OUR
SENIOR ADVISORS WHO'S BEEN
REALLY ENGAGED IN THAT IS HERE,
BUT SHE JUST STEPPED OUT BUT I
WILL HAVE HER COME TALK TO YOU
OFFLINE, ARE THERE OTHER
QUESTIONS?
LET'S SEE.
GO WITH RAFAEL AND THEN GENE AND
THEN YEAH AND THEN WE'LL
GO--YEAH ONLINE.
NSO, CAN YOU COMMENT ON HOW THE
PROGRAM HAS DEALT AND PLANS TO
DEAL WITH ETHICAL
CONSIDERATIONS, ALSO IN LIGHT OF
LAST COMMENT ABOUT ALTERNATIVE
METHODS ARISING?
NTHEY'RE VERY AWARE OF THAT,
THEY ARE TAKING IT INTO ARK
COUNT, THIS IS ALSO BEING
DISCUSSED IN THE BEHAVIORIAL AND
NEUROSYSTEMS SCIENCE ARENA O
THAT ETHICAL RESEARCH CAN BE
CONDUCT EXCLUDE THIS IS SHOULD
GO THEY TAKE INTO,A KOWBT FROM
THE GET-GO, SO YES THAT IS AN
IMPORTANT TOPIC, THEY DO TAKE IT
INTO ACCOUNT.
>> I'M INTERESTED IN A LITTLE
BIT OF THE DETAILS.
IS THERE A COMEIT -Y THAT BRINGS
IN AN EXPERT?
>> I DON'T KNOW HOW EACH NPRC
DOES IT BUT I DO KNOW THERE'S A
WORKING GROUP THAT ADDRESSES
THAT IN PART.
YEAH.
>> HI.
GREAT THANK YOU I'M STEPHANIE
MURPHY, DIVISION OF CAM
PARAATIVE MEDICINE AND THE NPRC
PROGRAM IS IN THE DIVISION'S
PORTFOLIO, I WAS ALSO GOING TO
BRING UP THE RIGOR AND REPRODUCE
ABILITY GROUP, BUT I ALSO WANTED
TO POINT OUT THAT THEY HAVE HAD
DISCUSSIONS IN THESE ARENAS FOR
EXAMPLE, THERE HAVE BEEN 2
WORKSHOPS LOOKING AT THE ETHICAL
USE AND ETHICAL RELATED ISSUES
TO NONHUMAN PRIMATE MODELS AND
THERE WERE NPRC DIRECTORS AND
EXPERTISE FROM THE NPRCs THAT
REPRESENTED ON THOSE PANELIST
ANDS AS PART OF THE OUTGOING
DISCUSSIONS.
>> GREAT.
THANK YOU STEPHANIE.
>> WE WILL GO GENE AND THEN
KENT.
>> I DO WANT TO SUPPORT AND
HIGHLIGHT THAT ALL OF THE
RESEARCHERS I KNOW WORKING WITH
PRIMATES DO THINK ABOUT ETHICS,
IT'S NOT THE FIRST LINE THAT
THEY ACTUALLY GO TO.
AND IN MANY INSTANCES THIS JUST
CAN'T BE DONE ANY OTHER WAY BY
COVID SO I REALLY DO WANT THE
RESEARCH COMMUNITY AND
COMMUNITIES IN GENERAL TO
UNDERSTAND THAT THIS IS NOT THE
FIRST LINE.
THAT PEOPLE GET THERE BECAUSE
THEY NEED.
WHAT I ALSO WANTED TO SAY, IS ON
THE NEW ENGLAND PRIMATE CENTER
IS CLOSED, I HAD TO FLY TO
WISCONSIN AND RESEARCHERS HAD
TO, WE WOULD TAKE A TEAM OF LIKE
12 PEOPLE TO WISCONSIN FOR A
CERTAIN AMOUNT OF TIME.
MY WORRY IS THAT IF PEOPLE DON'T
UNDERSTAND WHY WE DO THIS
RESEARCH AND IT'S NOT REAL CLEAR
TO THE PUBLIC THAT THERE ARE NO
OTHER MODELS AND CERTAIN
INSTANCES THAT WE WILL CLOSE
MORE OF THESE AND I AM WORRIED
AT SOME POINT WE WON'T BE ABLE
TO GET THE RESEARCH TO GET A
COVID VACCINE QUICKLY OR TO GET
TO SOMETHING.
AT THAT POINT PEOPLE UNDERSTAND
WHY YOU SHOULD HAVE IT BUT IT'S
SOMETIMES TOO LATE.
SO I DON'T KNOW HOW WE EMBED IN
THIS SOME WAYS WHERE THE ETHICS
IS NOT JUST TALKED ABOUT WITHIN
GROUPS BUT THE GROUPS ARE THE
MOST DIFFICULT GROUPS TO GET
THROUGH AND THEY SHOULD BE BUT
I'M JUST SAYING I FEEL IN ALL OF
THESE CONCEPTS THAT TO BE CLEAR
HERE HOW DO WE COMMUNICATE BACK
OUT THAT THIS IS IMPORTANT IN A
WAY THAT NONSCIENTISTS
UNDERSTAND.
BUT I FEEL THAT WE DO THAT AND
WE CLEAR IT AND WE ALL BELIEVE
IN IT, HOW DO WE CONTINUE TO
MAKE SURE OUR WEBSITES ARE UP TO
DATE SO PEOPLE CAN GET IT.
I THINK WE'RE NOT LOCKING IN AND
TRANSMIT THAGOREAN INFORMATION
IN A WAY THAT PEOPLE HAVE AN
UNDERSTANDING THAT WE'RE TAKING
ALL THESE CONSIDERATIONS INTO
PLAY BEFORE WE MAKE DECISIONS TO
DO THAT, MEAN WHILE WE'RE
LOOKING AT ALTERNATIVE METHODS.
THERE'S NOBODY THESE DAYS NOT
LOOKING AT ALTERNATIVE DAYS,
CELL CULTURE, WHATEVER IT IS YOU
CAN DO TO MAKE SURE YOU CAN DO
THAT RESEARCH WITHOUT
[INDISCERNIBLE].
>> I WASN'T GOING TO SAY
ANYTHING BUT I THINK IT'S
IMPORTANT.
YOU KNOW I'M NOTICING, I WAS
ALWAYS A FAN OF M. D. ANDERSON'S
CANCER CENTER THAT HAS A LINE.
I WAS TALKING TO OTHER COUNCIL
MEMBERS HERE TO YOUR POINT EVEN
THOSE OF US WHO ARE INVOLVED
WITH SCIENCE WERE NOT INVOLVED
WITH THIS PARTICULAR GROUP OF
SCIENCE WOULD REALLY BENEFIT
FROM IT BEING US LEADING IN FOR
THE ADVANCEMENT IN TECHNOLOGIES,
I REALIZE IT'S NOT DIFFICULT BUT
IT'S NOT IMPOSSIBLE, THAT PEOPLE
WHO GET BO THEM TEND TO HAVE AN
EASIER TIME FOR FURTHER
APPROVAL.
SO IF THERE WAS A WAY TO HAVE
THE CONCEPT INN CLUED IN THE
PURPOSE THAT WOULD IT WOULD
DISSUADE IN A WAY OF NONHUMAN
PRIMATES, I THINK LEANING INTO
THE IDEA THAT THERE'S A PUBLIC
OUTCRY FOR THAT WOULDN'T HAVE
BEEN A BAD DECISION.
I GUESS WHAT I'M SAYING IS I
WILL VOTE FOR THIS BUT I WOULD
LOVE FOR US TO ARE FORWARD, IN
THE SAME WAY MD ANDERSON HAS
BEEN FORWARD AGAINST THEIR OWN
INCENTIVES TO SAY THAT CANCER IS
SOMETHING TO CONTINUE--THE BUT
THE GOAL IS TO NOT NEAT NATIONAL
PRIMATE HUMAN RESEARCH CENTERS,
I THINK IT WOULD BE GREAT TO PUT
THAT UP THERE.
NINTERESTING.
>> KENT, I KNOW HAVE YOU
BEEN--YOU HAVE YOUR HAND RAISED
ELECTRONICALLY SO WE WILL TURN
TO YOU.
>> I WILL BE BRIEF TO KEEP ON
TIME.
DR. [INDISCERNIBLE] THE LAST
TIME NPRC PROGRAM WAS
REAUTHORIZED, THERE WERE SOME
ADJUSTMENTS AND CHANGES MADE TO
YOU KNOW TO CONTINUE TO BE VERY
CONTEMPORARY WITH THE NEED SO
THAT OUT OF THE RESEARCH OFFICE,
I WAS CURIOUS YOU DIDN'T MENTION
ANY CHANGES ADJUSTMENTS OR
ADDITIVES IN THE PROMULGATE TO
THE NEW CONCEPT CLEARANCE WE'RE
HERE TO APPROVE TODAY.
WHAT CHANGES WERE MADE IN THE
PROGRAM FOR THE PRIMATE CENTER
PROGRAM FOR THE FUTURE IN.
>> YEAH, SO SOME THINGS THAT WE
ARE CONSIDERING IS ACTUALLY
DISCUSSING ABOUT THE NAMS, THAT
MIGHT BE GOOD TO INCORPORATE,
ALSO DIVERSE PERSPECTIVES MIGHT
BE INCLUDED AND SO WE'RE OPEN
TO, YOU KNOW TO SUGGESTIONS THAT
PEOPLE IN THE COUNCIL MAY HAVE
AND THERE'S ALREADY BEEN SEVERAL
GOOD 1S.
>> SO IF THERE ARE NO MORE
QUESTION OR COMMENTS, LET'S TAKE
A VOTE, I WILL BE CALLING FOR A
VOTE.
I HAVE A CALL FOR APPROVAL OF
THE CONCEPT ENTIELTED NATIONAL
PRIMATE RESEARCH CENTERS AND I
NEED SOMEBODY TO SAY SO MOVED.
NSO MOVED.
THANK YOU LINDA.
SOMEBODY SECOND, PLEASE?
THANK YOU KEVIN.
IS THERE ANY DISCUSSION AT THIS
POINT IN NOT SEEING ANYMORE
DISCUSSION SO I AM GOING TO
ASKING NOT BY VOTE
ELECTRONICALLY, ALL THOSE IN
FAVOR SAY AYE.
ANYBODY OPPOSE SAYS NAY.
ANY ABSTENTIONS?TE
ONE ABSTENTION.
PARTICIPANTS WOULD YOU LIKE TO
VOTE?
OKAY.
I HEAR AYE AND ANOTHER?
>> AYE.
>> THANK YOU VERY MUCH.
I WOULD SAY THIS CONCEPT HAS
BEEN APPROVED UNANIMOUSLY WITH 1
ABSTENTION OF THE THANK YOU VERY
MUCH.
BACK TO YOU TARA.
>> THANK YOU SO MUCH, I WANT TO
TAKE A SECOND BECAUSE LINDA YOU
CAME IN LATE TO ALLOW YOU AN
OPPORTUNITY TO INTRODUCE
YOURSELF.
>> I WAS ABLE TO GET ON ZOOM TO
LISTEN IN BUT I WAS STUCK IN THE
CHUCKING IN THING, IT TOOK ME
OVER 2 HOURS TO GET HERE THIS
MORNING.
>> OH INFORM.
>> SO I'M LINDA CHANG UNIVERSITY
OF MARYLAND COOL OF MEDICINE AND
I PREVIOUSLY SERVE ON ON THE
NIDA BSC, BOARD OF SCIENTIFIC
COUNCIL AND ALSO THE NIDA
[INDISCERNIBLE] BEFORE SERVING
HERE AND I THINK THIS IS MY
CANNED WHAT HERE.
THANK YOU.
>> GREAT THANKS SO MUCH, SORRY
TO HEAR ABOUT YOUR TRAFFIC WOES.
OKAY, SO WE'RE GOING TO SHIFT
NOW TO OUR NEXT CONCEPT
CLEARANCE FOR TODAY, OUR FINAL 1
FOR TODAY, A NEW CONCEPT FROM
THE OFFICE OF BEHAVIORIAL AND
SOCIAL SCIENCES RESEARCH AND
DR. KRISTIN BRETHEL-HAURWITZ,
SOCIAL AND BEHAVIORIAL SCIENTIST
ADMINISTRATOR WITH OBSSR, AND
SHE WILL DISCUSS CONCEPT
CLEARANCE FOR RESOURCE AND
CAPACITY BUILDING TO ADVANCE THE
SCIENCE OF AGGRESSION ACROSS
SPECIES AND DISCIPLINES.
IT WILL BE FOLLOW BIDE 2
COMMENTS FROM DR. STEVE KING AND
LINDA CHANG AND WITH THAT I WILL
TURN IT OVER TO KRISTIN.
>> THANK YOU SO MUCH
DR. SCHWETZAND COUNCIL MEMBERS.
THANK YOU FOR THE OPPORTUNITY TO
PROSENT THIS CONCEPT.
NEXT SLIDE, PLEASE.
THIS IS A NEW FUNDING
OPPORTUNITY CONCEPT PROPOSING
USE OF THE R24 MECHANISM TO
SUPPORT RESOURCE AND CAPACITY
BUILDING AND RESEARCH ON THE
MECHANISMS OF THE TBREASESSIVE
BEHAVIOR, THROUGH ACTIVITIES
THAT BUILD CROSS DISCIPLINEAR
COMPETENT ACROSS SPECIES BRIDGES
INCLUDING BUT NOT LIMITED TO NEW
PARAIMPEDIMENTS DOOS, TOOLS,
DATA CONSORTIA, TEAM SCIENCE AND
TRAINING AND OUTREACH.
NEXT SLIDE, PLEASE.
AGGRESSION HAS VARIED
DEFINITIONS WHICH IS 1 OF THE
CHALLENGES TO ADDRESS IN THE
FIELD BUT 1 USEFUL DEVELOPMENTAL
ENDOCRINOLOGY CISION IS IRPT
PERSONAL BEHAVIOR THAT IS AIMED
AT INTENTIONAL HARMING ANOTHER
INDIVIDUAL.
AGGRESSIVE BEHAVIOR IS A
SIGNIFICANT AND INCREASING
THREAT TO PUBLIC HEALTH SO FOR
EXAMPLE IN 2021, THERE WERE
1.4 MILLION EMERGENCY DEPARTMENT
ROOM VISIT FOR ASSAULT AND OVER
26,000 HOMICIDE DEATHS IN THE
UNITED STATES, MAKING
UNDERSTANDING PREVENTING AND
TREATING AGGRESSIVE BEHAVIOR A
CRITICAL CHALLENGE.
THERE'S A FEW CHALLENGES TO THIS
AREA OF RESEARCH AND THIS
INCLUDES THE DIVERSITY OF
RESEARCH FOCI AND DIVERSITY OF
AGGRESSION MAKING DETERMINING
MECHANISMS DIFFICULT.
RESEARCH OFTEN ONLY CONSIDERS
THE INDIVIDUAL LEVEL RATHER THAT
KNOW A FULL SOCIAL ECOLOGY.
BEHAVIOR CANNOT BE SEPARATE
FRIDAY THE ENVIRONMENT, FOCUSING
ON ONLY ON THE INDIVIDUAL OR
FAMILY LEVELS, THIS IS LARGER
INTERTWINED SOCIAL CONTEXTS.
ENVIRONMENTAL FACTORS CAN CHARGE
BIOLOGY TO INCREASE AND DECREASE
AGGRESSION OVER TIME.
A MOAJOR CHALLENGE IS TO
INTEGRATE HUMAN COMPLEX WITH
RESPICE ANIMAL RERESEARCH AND
IMPROVE COMMUNICATION BETWEEN
THE 2.
COMPLEX SUBTYPES OF HUMAN
AGGRESSION THAT MAP ON TO
DEVELOPMENTAL PATTERNS AND HUMAN
EXPERIENCES ARE DIFFICULT TO
REPLICATE IN ANIMAL MODELS.
OVERLAPPING PHENOTYPES ARE HARD
TO SEPARATE IN YOU HAD HANS AND
MECHANISMS OF NATURALISTIC
BEHAVIOR CAN BE DIFFICULT OR
UNETHICAL TO TODAY IMPLEMENTS.
NEXT SLIDE, PLEASE.
ALSO THE MECHANISTIC
UNDERSTANDING AGGRESSIVE
BEHAVIOR HAS BEEN A RELATIVELY
UNDERRESOURCED AREA OF RESEARCH
DESPITE PUBLIC HEALTH COSTS.
A PORTFOLIO ANALYSIS THAT AMONG
VIOLENCE CREATED, ONLY ABOUT 14%
RESEARCH GREASES RELATED
SPECIFICALLY ON THESE MECHANISMS
OF AGGRESSIVE BEHAVIOR.
MOST VIOLENCE RELATED AWARDS
WERE ON APPLIED TOPICS TO THE
APPLIED ASPECTS OF YOUTH
VIOLENCE, VIOLENCE AGAINST
WOMEN, CHILD ABUSE AND NEGLECT
AND ALSO WERE IN HUMANS LEAVING
A LARGE GROWTH OF OPPORTUNITY
FOR ANIMAL AND TRANSLATIONAL
SCIENCE.
ALSO IMREASES IS A BSSR RESEARCH
TOPIC WITHOUT A CENTRAL HOME AT
THE NIH.
INCLUDING SPLINTERED AND
INCONSISTENT SUPPORT FOR
RESEARCH AND WORKFORCE
DEVELOPMENT.
DISCIPLINARY SILOING IN ACADEMIA
ACROSS FUNDING AGENCIES AND
CREATED GAPS IN COHESIVE
UNDERSTANDING OF MECHANICANISMS
IN ANIMAL ANDS HUMANS, STAGES OF
THE LIFE SPAN, LEVELS OF
INFLUENCE FROM BIOLOGICAL TO
INDIVIDUAL AND STRUCTURAL AND
ALSO BEHAVIORIAL AND DISORDER
DECS, THANK YOU.
THIS CONCEPT RESULTS FROM
SEVERAL YEARS OF WORK OF THE NIH
VIOLENCE WORKING GROUP INCLUDING
REQUEST FOR INFORMATION SPANNING
2021-2022 ANY A WORKSHOP LAST
YEAR IN 2023.
AS A COORDINATING OFFICE OBSSR
HAS LED THE INITIATIVE
DEVELOPMENT EAFORTS ON THIS
TOPIC IN COLLABORATION WITH THE
DWELVE OTHER INSTITUTES, CENTERS
AND OFFICES THAT YOU SEE LISTED
HERE IN THE TOP RIGHT.
THE WORKSHOP LAST YEAR TOOK A
HUB AND SPOKE APPROACH TO
ILLUSTRATED HERE IN WHICH GAPS
AND OPPORTUNITIES IN RESEARCH ON
AGGRESSION WERE EXAMINED FOR
MULTIPLE DISCIPLINARY PURCHASE
INCLUDING BEHAVIORIAL AND
COGNITIVE NEUROSCIENCE,
EXPERIMENTAL AND CLINICAL
PSYCHOLOGY, KRIMINNOLOGY, ETHIC
ANDS PHILOSOPHY, BEHAVIORIAL
GENETICS AND EVOLUTIONARY AND
BIOLOGY.
AND ACROSS ALSO BOTH ANIMAL AND
MUSEUM MAN RESEARCH AND THIS
APPROACH WAS EMPLOYED TO GET A
FULLER PICTURE OF RESEARCH NEEDS
ACROSS THIS RESEARCH TOPIC.
AND SOME REASON THE REQUEST FOR
INFORMATION AND WORKSHOP FOR
RECORDINGS ARE AVAILABLE ON OUR
WEBSITE.
AND THESE ACTIVITIES HIGHLIGHT
THAD AGGRESSION HAS NIH-WIDE
RELEVANCE.
IT'S A HETEROGENEOUS SET OF
BEHAVIORS WITH APPROX
MALRESEARCHES, IT VARIES ACROSS
THE LIFE SPAN AND CAN PERSIST 42
CHILDHOOD TO ARK DULT HOOD, IT'S
EBS POSURE TO PSYCHOSOCIAL AND
ALSO ENVIRONMENTAL TEXT CANTS,
IT EMERGES IN ALZHEIMER'S DEC
AND OTHER RELATED DEMENTIAS, IT
CAN CAUSE OR EXASER BAIT HEALTH
INEQUITS AND DISPARITIES AND CAN
BE AN ADVERSE EFFECT OF VARIOUS
DISEASE STATES OR EVEN A SIDE
EFFECT OF INTERVENTIONS.
SO OVERALL BETTER UNDERSTANDING
OF THE FOUNDATIONAL AND
BIOLOGICAL BEHAVIORIAL AND
SOCIAL MECHANISMS OF AGGRESSION
IS CRITICAL FOR MITIGATING
HEALTH OUTCOMES.
NEXT SLIDE.
AND DEVELOPMENT ACTIVITY IS ALSO
HIGHLIGHTED SPECIFIC MEANS IN
RESOURCE AND CAPACITY BUILDING.
THESE INCLUDED NATURALISTIC
EXPERIMENTAL PARADIGMS, THAT CAN
BE APPLIED ANALOGOUSLY ACROSS
BOTH ANIMAL AND HUMAN RESEARCH
TO BRIDGE DISCIPLINARY SILOS AND
TRANSLATIONAL GAPS.
NEXT, IMPROVE MEASUREMENT TOOLS
SO FOR EXAMPLE, SOCIAL BEHAVIOR
CLASSIFIED BY COMPUTATIONAL
MODELS, THE CONSENSUS ON
TAXONOMIES AND ONTOLOGIES
TO CATALYZE PROGRESS.
TO ACCELERATE ADVANCES.
NEXT, TEEM COLLABORATIONS AND
MEETINGS TO FACILITATE DIALOGUE
ACROSS LOTS OF CONSCIENCES AND
DISCIPLINES, INCLUDING
BEHAVIORIAL BIOLOGY, BEHAVIORIAL
GENETICS ARE, CRIMINOLOGY AND
SOCIOLOGY.
AND TRAINING INCLUDE NOTHING
BIOETHICS TO SUPPORT THE FIELD
MOVING FORWARD.
NEXT AND ALSO OUTREACH AND
COLLABORATION, ACROSS THE
TRANSLATIONAL RESEARCH CONTINUUM
BUT ALSO WITH PRACTITIONER ANDS
THOSE IN NEED OF TREATMENT TO
INSURE USE INSPIRED RESEARCH
WITH A STRONG FOUNDATIONAL
BASIS.
IF YOU COULD GO BACK JUST A
MOMENT, JUST LAST SLIDE AND WE
ENVISION THAT PROJECTS SUPPORTED
BY THIS FUNDING CONCEPT COULD
FOCUS ON 1 OR MORE OF THOSE
PRIORITIES IN RESOURCE CAPACITY
BUILDING POTENTIALLY LEADING TO
THE TWEPMENT OF FUTURE FUNDING
OPPORTUNITIES.
OB, IS SR INTENDS TO SET UP
FUNDS FOR TO SUPPORT THIS WORK
AND SIGN-ONS WILL BE SOUGHT FOR
12 OTHER INSTITUTES AND CENTERS
INVOLVED IN THIS INITIATIVE AND
THE ACTIVITY TO DATE AND ACROSS
THE NIH.
AND HERE'S FURTHER XCHS THAT MAY
BE SUPPORTED BY SUCH A RESOURCE
AND CAPACITY BUILDING FUNDING
OPPORTUNITY.
THESE INCLUDE INNOVATIVE
EXPERIMENTAL PARADIGMS TO
EXAMINE NATURALISTIC AGGRESSION
AND BEHAVIOR ACROSS SPECIES.
CREATIVE MODELING OF HUMAN
PRESENCES AND ANIMAL MODELS
THROUGH DIRECT COLLABORATION
BETWEEN HUMAN AND ANIMAL
RESEARCHERS, NOVEL METHOD IT IS
FOR COMPUTATIONAL MODELS OF
SOCIAL BEHAVIOR THAT CAN BE
APPLIED ACROSS SPECIES AND
PARADIGMS.
MEETING OF EXPERTS ACROSS
DISCIPLINES AND ALSO SPECIES
STUDY TO BUILD CONSENSUS ON A
TAXONOMY FOR GRESSIVE BEHAVIOR
AND HOW BEST MODTOLL HUMAN
AGGRESSION AND SOCIAL CONTEXT IN
THE ORGANISMS.
WE ALSO HAVE REPOSITORIES OF
BRAIN DATA AND RESEARCH ON
CONSERVED MECHANISMS.
NEXT PLEASE.
AND NEXT I'M GOING TO GO OVER A
BIT MORE ON THE MECHANISM WE'RE
CONSIDERING SINCE THE R24 IS A
LESS COMMONLY USED OPTION THAT
YOU MAY NOT BE AS FAMILIAR WITH.
PROPOSED RESOURCE FOR RELATED
RESEARCH PROJECTS FOR R24S,
ADVANCING EXPRCH AGGRESSION
THROUGH ACROSS SPECIES AND CROSS
DISCIPLINE RICH BUILDING, R24S
ARE DESIGNED TO SUPPORT RESEARCH
PROJECTS THAT WILL ENHANCE THE
CAPABILITY OF RESOURCES TO SERVE
BIOMEDICAL AND BEHAVIORIAL AND
SOCIAL RESEARCH.
AND HERE I'VE HIGHLIGHTED SOME
TEXT FROM A DESCRIPTION OF HOW
THE R24 HAS BEEN USED TO
SUPPORTING BEHAVIORIAL AND
SOCIAL SCIENCE RESEARCH
SPECIFICALLY AGING RESEARCH IN
THIS EXAMPLE WITH SIMILAR
CHARKTISTICS AS WHAT WE'RE
HOPING TO ACHIEVE WITH THE
INITIATIVE SUPPORT HERE.
THIS INCLUDES SUPPORTING
EMERGING TRANSPOLICE PLINAR EXPE
RESEARCH AREAS THAT REQUIRE MORE
NIMBLE RESOURCES TO FLOURISH,
SUPPORTING AREAS THAT REQUIRE
ONGOING AND DYNAMIC
INFRASTRUCTURE AND ADVANCE HIGH
PRIORITY RESEARCH TO MAINTAIN
AND ENHANCE DATA COLLECTION
EFFORTS AND DEVELOP NEW TOOLS
AND METHODS AND FACILITATE
TRANSDISCIPLINARY COLLABORATIONS
AND SUPPORT AND TRAINING NEW
INVESTIGATORS AND RECRUITING THE
BEST SCIENTISTS.
NEXT PLEASE, AND IMPORTANTLY
THIS IS JUST 1 EXAMPLE OF
SEVERAL R24 FUNDING
OPPORTUNITIES THAT HAVE BEEN
SUCCESSFUL IN SUPPORTING
RESOURCE AND CAPACITY BUILDING
IN BEHAVIORIAL AND SOCIAL
SCIENCES.
DEVELOPINGMEETINGS, AND
DEVELOPMENT ON INFRASTRUCTURE,
SMALL SCALE PILOTS DISSEMINATION
AND OUTREACH ACTIVITIES AND
EDUCATIONAL ACTIVITIES MULTIKISS
PLINARY COLLABORATIONS TO TARGET
RESEARCH AND TEAM APPROACH
SCIENCE AND GENERATING
RESOURCES.
AND OVERALL THE R24 IS USED IN A
WIDE VARIETY OF WAYS TO PROVIDE
RESOURCES TO RESEARCH PRONGECS
OR TO CANCER RESEARCH INSTRAY
JECTORY SPHRUCTURE AND ALSO I
WANT TO NOTE THERE ARE NO
INVESTIGATOR INITTIAITED R24S
ONLY SPECIALIZED KAWS SUCH AS
THE 1 BEING PROPOSED HERE.
NEXT PLEASE.
LASTLY I WILL NOTE THIS EFFORT
WOULD BE DIRECTLY RESPONSIVE TO
RECENT REPORTS OF WORKING GROUPS
OF THE COUNCIL OF COUNCILS
FOCUSED ON BEHAVIORIAL AND
SOCIAL SCIENCES.
SO FIRST AND THE
EPITHELIALIGRATION OF SOCIAL
SCIENCES ACROSS THE NIHR WHICH
WAS PUBLISHED IN 2022, AND THE
RELEVANT RECOMMEND EGGS INCLUDE
INCREASING CENTERS, RESOURCE AND
TRIAL NETWORKS THAT INCREASE OUR
CAPACITY AND FOCUS AND YOU CAN
SEE ON THE RIGHT SIDE OF THE
GRAPH HERE, A SMALL MINORITY OF
R24 FUNDING, 10% OF THE OVERALL
RESEARCH GRANTS HERE.
IT WOULD ADDRESS FOSTERING TEAM
SCIENCE AND MULTIDISCIPLINARY
INTERNATIONAL CLASSIFICATION
FRAIGZ AND ALSO THERE WAS THE
RESEARCH--THE REPORT ON THE
BASIC BEHAVIORIAL AND SOCIAL
SCIENCES ACROSS THE NIH
PUBLISHED IN 2021, FOR THE
RECOMMENDATIONS HERE ARE
STRENGTHENING SUPPORT ON
BEHAVIORIAL AND COGNITIVE SOCIAL
SCIENCES AND ALSO INFLUENCES AND
SOCIAL INTERACTIONS ON HEALTH.
STRENGTH AND CAPACITY BUILDING
STRENGTHENING TEAM SCIENCE AND
CLUSTERING MOTIVATION AND
SPECIFICALLY WITH THE BASIC
BEHAVIORIAL SOCIAL SCIENCE AND
NEUROSCIENCE, IMPROVING ANIMAL
HUMAN RESEARCH INICATION,
SUPPORTING SKILLS AND
INTRODUCING PLANNING RESEARCH
AND TEAM SCIENCE AND ALSO
STRENGTHENING RESEARCH AND
INFRASTRUCTURE AND PROCESSES
INCLUDING ENCOURAGING MORE MELTY
LEVEL RESEARCH, STRENGTHENING
BASIC APPLIED TRANSLATIONAL
EPITHELIAL TBRAIGZ AND
DEVELOPING AND EXPANDING BASIC
BEHAVIORIAL AND SOCIAL SCIENCE
RESEARCH AND DAILY BASIS THEA
REPOSITORIES.
SO OVERALL IN THE SLIDES, THESE
WOULD ADDRESS MANY
RECOMMENDATIONS SPECIFICALLY IN
THE AREA OF AGGRESSION RESEARCH.
ALL RIGHT SO THAT CONCLUDES MY
PRESENTATION.
THANK YOU FOR YOUR TIME THIS
MORN XG I LOOK FORWARD TO OUR
DISCUSSION.
>> GREAT.
THANK YOU VERY MUCH KRISTIN.
WE WILL START WITH
[INDISCERNIBLE].
>> THANK YOU FOR THE
PRESENTATION, REALLY I WAS TAKEN
ABACK BY THE FACT THAT HASN'T
BEEN DONE BEFORE AND IT'S LONG
OVERDUE AND I HAVE TO SAY
FUNDING IN THIS AREA HAS BEEN
MINIMAL CONSIDERING OTHER THINGS
WE FUNDED.
AND THERE IS A CERTAIN URGENCY
NOW, LIKE WE CAN'T TURN ON OUR
TVS NOW WITHOUT SEEING
AGGRESSIVE ACTS.
SO I DON'T THINK IT'S TIMELY,
IT'S LONG OVERDUE SO I TOTALLY
AND STRONGLY, WITH EVERY SINGLE
WORD YOU CAN THINK OF A
SUPERLATIVE TO SPRPT THE CONCEPT
NOW THE GREATER UNDERSTANDING
THAT I THINK WE NEED TO BRING
AGAIN IS THAT THE LACK OF
UNDERSTANDING AGGRESSION, WE
HAVE BEEN STUDYING ACROSS
SPECIES FOR A VERY LONG TIME, I
THINK YOU'RE RIGHT, WE HAVEN'T
HAD A WAY TO HAVE THIS CROSS
SPECIES PERSPECTIVE REALLY
INTERSET WITH HUMAN PERSPECTIVE
ANDS HOW CAN YOU DO THIS IN
HUMANS, YOU ARE TOTALLY RIGHT,
IN SOME WAYS IT'S UNETHICAL SO
WE HAVE TO FIGURE OUT OTHER WAYS
TO DO THAT, GIVEN A GOOD REASON
WHY ANIMAL MODELS IS THE ONLY
WAY TO GO BECAUSE CAN'T ASK
HUMANS TO DO THINGS YOU NEED TO
UNDERSTAND.
SOME OF THE THINGS THAT CAME OUT
OF THAT RESEARCH FOR EXAMPLE IS
[INDISCERNIBLE] HAMSTERS TEND TO
BE QUITE AGGRESSIVE, SO WE HAVE
USED HAMSTERS AS A MODEL OF
AGGRESSION, THEY WILL FIGHT
UNDER ANY CONDITION ANDS IF THEY
HAD HAD ALCOHOL OR ANY OTHER
DRUG, THEY FIGHT EVEN MORE.
THE THING THAT CAME OUT OF THAT
IS THAT A VASO-PEPTIDE AND
NEUROPRUDENTIAL ASSESSESSIVE AND
IMPORTANT IN THAT TYPE OF
AGGRESSION.
WHEN WE WEPT FROM THAT TO HUMANS
USING NAISAL SPRAYS WITH THE
SUPPRESS ANT TO TRY TO
UNDERSTAND AGGRESSION IN HUMANS
IT DOESN'T WORK AS WELL BECAUSE
YOU DON'T WANT TO GIVE A HUMAN A
DRUG THAT YOU'RE NOT SURE WHAT'S
GOING TO HAPPEN.
SO WE HAVE TO FIGURE THAT OUT.
OXIITOSEIN AND [INDISCERNIBLE]
WE KNOW HAS BECOME SOCIAL
BONDED, WE KNOW THE OVERLAP OF
THESE SYSTEMS, THE 2 PEPTIDE
SYSTEMS ARE INTEGRATING BUT
THEY'RE IN DIFFERENT BRAIN
REGIONS IN OUR BRAIN THAN THEY
ARE IN DIFFERENT CROSS SPECIES
SO WE DO HAVE TO DO A CROSS
SPECIES ANALYSIS TO THAT.
THIS CROSS SPECIES APPROACH IS
PROBABLY THE MOST HELPFUL
TALKING ABOUT MARMOSETS AND
TISSUE AND MACROPHAGESARINS,
THEY ARE MORE AGGRESSIVE THAN
MARMOSETS, WE KNOW WHAT'S
HAPPENING IN THE SPECIES AND
THAT WAY AND HOW TO TREAT IT SO
I WOULD SAY GIVEN ALL OF WHAT
WAS SAID, THE PIECE THAT I'M
REALLY CONCERNED ABOUT AND I
WOULD LIKE YOU TO RESPOND TO IS
THE URGENCY OF GETTING TO
MITIGATION STRATEGIES.
HOW DO WE ANY PRACTICES THE DATA
WE HAVE NEUROSCIENCE AND THE
DATA WE HAVE IN GENETICS AND
SOCIAL CONTEXT WE KNOW IN ANIMAL
SOCIAL CONTEXT, I JUST TALKED
ABOUT HAMSTERS, THEY FIGHT MORE
IF THEY'RE IN TIGHT QUARTERS.
WE KNOW POVERTY IS AN IMPACT ON
HOW DENSE PEOPLE LIVE TOGETHER.
HOW WOO --WE GOING TO TRANSLATE
SO MANY THINGS.
IT'S SO WIDE AND BROAD.
ARE YOU GOING TO THINK ABOUT
WAYS THAT WE COULD HAVE SOME, I
HATE TO DO THIS FROM SCIENCE BUT
YOU COULD HAVE GUARD RAILS FOR
WHERE YOU WANT THIS TO END UP.
BECAUSE TO ME, THE BEST CHANCE
IS IF YOU HEAD HEAD WHAT YOU
SAID HERE, THE OBLIGATIONS YECT
SIEVE TO SUPPORT RESEARCH
CAPACITY BUILDING ALL OF THAT
IMPEDIMENTS WELLITTED, NOT
LIMITED TO NEW EXPERIMENTAL
PARADIGMS AND TOOLS, DATA
CONSORTIUM, TRAINING AND
OUTREACH IN THAT MITIGATION
STRATEGY OR SOMETHING WHERE I
TELL PEOPLE THAT'S REALLY WHERE
I WANT TO END UP.
I DO UNDERSTAND WE HAVE TO GET
TO THE BASIC UNDERSTANDING AND
MECHANISMS, I GET THAT.
BUT I THINK I REALLY WOULD LIKE
TO SORT OF LET THEM KNOW THIS IS
NOT SOMETHING WE HAVE DECK'SS '
SS--DECK'SS TO TRY TO
UNDERSTAND.
SO IF YOU COULD SPLAIP THAT.
>> HAPPY TO.
AND A VERY IMPORTANT POINT AND
SOMETHING WE'VE BEEN KEEPING IN
MIND THROUGHOUT THESE
DEVELOPMENT ACTIVITIES.
IT WAS A STRONG DISCUSSION IN
THE WORKSHOP THAT THERE IS ON
THE MORE MECHANISTIC FUNDAMENTAL
SIDE, BUT IT'S WITH AN EYE
TOWARDS THOSE APPLIED
INTERVENTIONS, WHAT DOES THIS
MEAN FOR INTERARE VENTIONS IN
MUSEUM MAN.
I THINK THE COMMUNICATION WILL
BE IMPORTANT.
IT'S WHY WE'RE INTERESTED IN
TEAM SCIENCE APPROACH, SO IT'S
NOT JUST I READ PAPERS IN THE
HUMAN WORK, I CAN APPLY THAT TO
MY HUMAN RESEARCH, WE DO HAVE
THOSE WORKING DIRECTLY TOGETHER
TO CREATE SOME OF THESE PERHAPS
NOVEL EXPERIMENTAL PARADIGMS,
NOVEL WAYS OF ANALYZING DATA,
ACTUALLY BRINGING THE DATA SETS
TOGETHER IN SOME
N THAT THEY
CAN ACTUALLY INFORM EACH OTHER
AND SO, COMMUNICATION IS
SOMETHING THAT WE REALLY WANT TO
BUILD BO THIS INITIATIVE AND
REALLY REQUIRE THAT THIS WORKING
THIS TRUE COMMUNICATION ACROSS
DISCIPLINES, BECAUSE WE
DEFINITELY KEEP AN EYE TOWARDS
WHAT ARE THE APPLIED
IMPLICATIONS OF THE WHOLE
PURPOSE OF HAVING THIS TO CREATE
BASIC RESEARCH THAT IS MORE
INSPIRED, MORE INFORMED BY THE
NEEDS OF THE INNERVENTIONISTS.
>> AND I LOVE THE IDEA THAT IT'S
A REQUIREMENT BECAUSE I THINK IF
IT ISN'T PEOPLE WILL SORT OF GO
INTO THEIR OWN SILOS, EVEN IF WE
TELL THEM TO TALK ACROSS EACH
OTHER, IT WILL BE A TALK NOT A
WALK.
WE DON'T WALK AND TALK THE SAME
GAME.
I DO LIKE SOMETHING THAT CAME UP
EARLIER ABOUT MAKING SURE WE
HAVE THE PROVIDERS OF HEALTHCARE
SO PEOPLE WHO ARE AGGRESSIVE IN
THE ROOM SAYING THIS IS WHAT
I'VE USED, THIS WORKED, THIS
DOESN'T WORK AND THEN WE CAN
BACK TRACK TO HOW WE STUDY THAT
AS OPPOSE TO GO FORWARD ON, I
THINK THIS IS A MECHANISM,
THEREFORE, THE FOLLOWING.
SO TRYING TO HAVE A CROSS TALK
IN BOTH DIRECTIONS.
I ALSO WANT US TO CONSIDER
HAVING COORDINATING SYSTEMS OR A
WAY TO COORDINATE ALL OF THE
THINGS THAT'S HAPPENING BECAUSE
I BELIEVE 1 OF THE BIGGEST
THINGS ON HERE IS THE
CATACONSORTIUM.
WE HAVE A LOT OF DATA ALL OVER
THE PLACE, THEY'RE NOT
CONNECTED.
WE NEED DATA SCIENTISTS TO BE IN
ON THE TEAM SO THE TEAM CANNOT
JUST BE BASIC SCIENTISTS AND
CLINICAL SCIENTISTS, WE NEED
THEM ALSO AND STAKEHOLDERS FROM
THE DIFFERENT PARTS OF THE
UNIVERSE HERE.
I THINK WE REALLY NEED TO MAKE
SURE EACH TEAM HAS DATA
SCIENTISTS IMPLICIT IN THE TEAM
AND EMBEDDED IN THE TEAM TO SORT
OF BRING THAT DATA TOGETHER
BECAUSE WE MAY END UP AT THE END
OF THIS WITH LOTS OF DATA AND
LOTS OF GOOD DATA BUT ON THE
CONNECTED.
AND WE NEED TO CONNECT THEM IN
ORDER TO GET FROM WHERE WE ARE
TO MITIGATION OF SOME SORT IF
THE DATA IS JUST SPREAD ALL OVER
THE UNIVERSE, THAT'S PROBABLY
GOING TO HAPPEN.
SO, THE OTHER AREAS I WANT TO
SAY ABOUT BECAUSE THERE'S SO
MUCH HERE, ALL THE AGENCIES
INVOLVED.
THE OVERLAP OF SO MANY THINGS.
THE IDEA THAT HEALTH DISPARITIES
I WANT TO MAKE SURE THAT THAT'S
EMBEDDED IN HERE, THAT THOSE
CONVERSATIONS EMBED DIVERSE
POPULATIONS AND MAKING SURE THAT
HAPPENS, SOME SORT OF
COLLABORATION, SO PEOPLE COULD
COORDINATE WHAT'S HAPPENING, SO
THAT YOU CAN GET TO DATA TO THE
END OF 5 YEARS AND TELL US
SOMETHING THAT WE IS SAY OKAY,
WE GOT TO X PLACE, AND THE
OVERLAP OF STUFF LIKE ARK
DICTION AND MENTAL HEALTH AND
AGING AND YOU DIDN'T BRING IN
GENDER BUT I WANT TO BRING IN
GENDER, WHEN YOU LOOK AT GENDER
ACROSS SPECIES, THEREYA A
DIFFERENCE, I WILL NOT SAY IN
WHICH DIRECTION OF SOME GROUPS
BEING MORE IMREASESSIVE THAN
OTHER ANDS WE NEED TO UNDERSTAND
THAT AND WE NEED TO UNDERSTAND
THE TIMELINE SO I AM STRONGEE IN
SUPPORT OF THIS, I JUST THINK
BECAUSE IT'S SO WIDE AND THE
BECAUSE IT'S SO NECESSARY, AND
BECAUSE THERE'S AN URGENCY OF
NOW, COULD WE PUT GUARD RAILS ON
WHAT IT IS YOU EXACTLY WANT TO
GET THAT.
SO WHEN RESEARCHERS ARE INVITED,
THEY KNOW WE WANT TO GET TO THIS
PLACE, THEY MAY NOT GET THERE
THE FIRST TIME ARK ROUND, THAT'S
FINE BUT THEY WOULD UNDERSTAND
THE SIGNIFICANCE OF GETTING
MITIGATION.
>> THANK YOU APPRECIATE THAT
COMMENT.
THAT'S A CHALLENGE WE RAN INTO
IN DEVELOPING THE WORKSHOP, HOW
DO WE GET OUR SCOPE SO WE CAN
HAVE A PRODUCTIVE DISCUSSION,
THAT WILL BE DISUSES FOR
INITIATIVE DEVELOPMENT AND WE
HAVE CONSIDERED HEALTH
DISPARITIES AND GENDER ISSUES AS
WELL.
THANK YOU.
NTHANK YOU.
NGREAT, THANKS SO MUCH JEAN.
LINDA?
>> HI, I TOTALLY AGREE WITH
EVERYTHING THAT JEAN MENTIONED
EARLY.
THIS IS A TOPIC THAT ACTUALLY IS
SO WIDE AND SO INTERDISCIPLINARY
AND THEY DID A GREAT YOB CORPS
OF SUMMARIZING THAT, SO AS YOU
GO INTO THE NIH RECORDER TO SEE
WHAT KIND OF GRANTS WE'RE
FUNDING AND THERE ARE ABOUT 50
GRANTS OR SO THAT HAVE THE WORD
AGGRESSION IN THE TIETSD AND
ANOTHER 50 JUST SHY INVOLVING
VIOLENCE, AND IT'S NOT FUNDED
VERY MUCH AND ALMOST ALL THE
GRANTS THAT ONCE ARE FUNDED
EITHER BY NIMH, NIH, NIGASHING
MS, NIAA, AND A FEW OTHERS SO
THEY HAVE BEEN FOCUSED ON
VARIOUS THINGS LIKE PROMOTING
CONDITIONS FOR SUBSTANCE ABUSE
OR MENTAL HEGHT ISSUES.
AND THEN YOU SHOW THE 2 EMPLOY
ANDS THE 1 FROM THE ANALLING
INNSITUTE BECAUSE IT DOES AFFECT
DIMENSIONIA ALSO AND I AGREE
WITH YOU, YOU CAN'T TURN ON THE
TV AND NOT HEAR ABOUT VIOLENCE
AND THE QUESTION RELATED
PROBLEMS, I KNOW WARS, SCHOOL
SHOOTINGINGS, SO IT REALLY IS A
TOPIC TO FOCUS ON AND GET BETTER
UNDERSTANDING TO UNDERSTAND
AGGRESSION NOT JUST WITHIN
MITIGATION BUT JUST
UNDERSTANDING THE NEUROLOGICAL
BIOLOGICAL BASIS AND THE
TRIGGERS AND COMORBID CONDITIONS
AND APPLY MENTAL INFLUENCE AND
SO FORTH BECAUSE IF YOU
UNDERSTAND LIKE TRYING TO FIND
LIKE GENETIC OR FAMILIAL
DISPOSITION OR SOCIAL FACTORS
THAT MIGHT ENHANCE THE
AGGRESSIVE BEHAVIOR, I THINK ALL
THAT NEEDS TO BE TODAYED BEFORE
YOU CAN GET TO THE
TREATMENT--STUDIED BEFORE YOU
GET TO TREATMENT AND STRATEGIES.
SO IT'S A VERY AMBITIOUS PROJECT
APPROACH AND IT INVOLVES 13
INSTITUTES, RIGHT, YOU'RE
WORKING GROUP TO COME UP WITH
THESE IDEAS.
SO I MEAN I REALLY LIKE THE IDEA
YOU WANT TO DO DISCIPLINARY,
TRANSLATIONAL BUT IT SEEPS LIKE
WITH AN R24 I'M TRYING TO FIGURE
OUT WHAT CAN WE DO WITH AN R24
BECAUSE HIVE HAD AN R24 BEFORE
AND THEY'RE KIND OF--THEY
CHRONIC --THEY
COULD BE SMALL GRANTS.
THE 2 EXAMPLES YOU GAVE, 1 RFA
WAS 250,000 A YEAR, YOU TRY TO
LIKE DO TRANSDISCIPLINARY,
PRECLINICAL, CLINICAL, MEETINGS,
OUTREACH, YOU'RE TRYING TO DO A
LOT WITH MAYBE A REALLY SMALL
BUDGET.
THE 1 FROM NICHD, THE P A R WAS
BIGGER, THAT 1 WAS 750,000 A
YEAR, SO I KNOW IF IT'S OUR YOB
CORPS TO RECOMMEND LIKE THE
SCOPE, LIKE HOW BIG THIS PROJECT
NEEDS TO BE IF YOU MENTIONED
GUARD RAILS BUT, YOU WANT TO
LIKE HAVE SOME NARROW FOCUS, SO
I THINK WE DO HAVE--RIGHT NOW IS
REALLY, REALLY BROAD AND I THINK
THAT'S MY ONLY CONCERN, LIKE
WHAT CAN YOU DO WITH AN R24,
LIKE MY PREVIOUS R24, WE JUST
FUNDED 3 SMALL BROJECS FOR
DIVERSITY TRAINEES TO TRY TO GET
THEM TO DO SOMETHING IN THEIR
DATA SO THEY BEING GET TO AN
RO-1 OR SOMETHING, BUT IF YOU
WANT TO DO TRAINING AND
OUTREACH, AND TRANSDISCIPLINARY,
PRECLINICAL, CLINICAL ACROSS
PCs, I'M NOT SURE WHAT KIND OF
BUDGET IT WOULD TAKE TO DO THAT
KINE OF WORK AND YOUD YOU WANTED
TO REQUEST FUNDING FOR 4-6
AWARDS FOR THIS MECHANISM SO I
THOUGHT SHE SHOULD DISCUSS THAT.
>> YEAH, SURE, I WOULD BE HAPPY
TO DISCUSS THE SIZE AND WHAT WE
CAN DO WITH AN R24.
I LISTED A COUPLE PROGIES TO
ADDRESS.
WE WOULD NOT GIVE THEM ALL OF
THESE, MAYBE 1 OR 2 AND COMBINE
THEM IN WHATEVER WAY THEY THINK
IS INNOVATIVE, USEFUL CREATIVE
AND WE SEE A FIRST STEP FOR
SUPPORTING RESEARCH THAL AREA WE
HOPE WOULD NEED TO FOR DATION
TELL OPPORTUNITIES IN THIS AREA,
IT'S RESPONDING TO WHAT WHAT WAS
CALLED FOR FOR RESEARCHERS THIS
INFRASTRUCTURE AND ACROSS
DISCIPLINES, SO WE REALLY SEE
THIS AS A STEP FOR GETTING THESE
TOOLS, THESE STEPPING STONES IN
PLACE, WHAT CAN BE DONE WITH AN
R-24 AND IT LOOKS LIKE YOU HAVE
A--OH, SORRY.
>> I'M REALLY DELIGHTED TO SEE
THIS AND THE ONLY THING THE ONLY
THINK THIS I WOULD LIKE TO ADD
TO MY CONVERSATION IS--IF YOU
WANT TO UNDERSTAND WHAT'S GOING
TO BE THE GREASESSORS IF THE
NEXT DECADE YOU NEED TO IDENTIFY
THE 3-8 YEAR-OLDS NOW IN OUR
COMMUNITY WHO SOMETHING'S
HAPPENING TO THAT'S PUTTING THEM
ON THAT PATH.
AND I THINK THE OPPORTUNITY TO
BE TRANSGENERATIONAL HERE IS
PRETTY IMPORTANT.
>> YES, THANK YOU.
THAT'S AN IMPORTANT COMMENT AND
IN OUR PLANNING OF ACTIVITIES,
OUR WORKSHOP, THE EXTENT TO
WHICH THE PROJECT WITHIN THIS
R24 COULD BEGIN A TAP AND SET UP
A LONGITUDINAL STUDY AND WE
WOULD DEFINITELY CONSIDER THAT
WITHIN SCOPE.
>> I'M SORRY, I WILL BE REAL
DIRECT ON THIS, THIS IS A VERY
IMPORTANT TOPIC TO THE PUBLIC
WHICH MEANS IT'S ALSO VERY
IMPORTANT POLITICAL TOPIC.
YOU HAVE THE OPPORTUNITY TO STEP
IN TO A SPACE THAT WE DON'T
UNDERSTAND WELL ENOUGH OBVIOUSLY
BECAUSE WE--WE--YOU NOT ABLE TO
STOP--WE'RE NOT ABLE TO STOP
WHAT'S GOING ON.
I THINK THIS PROGEC, I AGREE
ISSUES THE BROADNESS OF IT WILL
CAUSE IT TO BE DEFEATED, I
THINK, IT WILL NOT BE IMPORTANT.
IT CAN BE VERY CLEAR WITH
PRIORITIZATION PARTICULARLY
BASED ON THE REAL WORLD
EXPERIENCES.
I THINK WE HAVE ENOUGH ANECDOTA
DATA THAT WE HAVE A PROBLEM WITH
ADOLESCENTS, SO MANY TIMES THESE
BEHAVIORS ARE SPOTTED BUT
NOTHING IS DONE OR PEOPLE DON'T
KNOW WHAT TO DO.
I THINK THERE'S OPPORTUNITIES TO
USE THE REAL WORLD AS YOUR GUIDE
FOR PRIORITIZATION.
I THINK IT'S ALSO AN OPPORTUNITY
TO GO OUTSIDE OF NIH, THROUGH
OTHER DATA SOURCES THAT WILL
HELP YOU TO BEGIN TO IESHES
DENTIFY MAYBE POCKETS, AGE
GROUPS, ETHNIC GROUPS OR
WHATEVER WHERE CRIME IS
OCCURRING TO PEOPLE OR BY
PEOPLE.
I THINK WITHOUT BROADENING YOUR
DATA SOURCES AND I'M JUST NAMING
THAT, I'M SURE THERE'S OTHERS
OUT THERE, THAT WITHOUT THAT,
YOU'RE NOT GOING TO GET TO SOME
REASONABLE RECOMMENDATIONS
QUICKLY.
I SAT ON THE CROSSING THE
QUALITY CHASM AND WAS HORRIFIED
IT TAKES 15 YEARS FOR A
SCIENTIFIC DISCOVERY TO GET OUT
INTO THE REAL WORLD EMPLOY WE
DON'T HAVE 15 YEARS WITH THIS 1.
SO I WOULD LOVE TO HEAR SOME
TYPE OF PRIORITIZATION, AND SOME
SENSE OF URGENCY FOR WHAT YOU
HAVE IN WRITING.
IS THIS DISCOVERABLE?
AND I'M SAYING THAT FOR A
REASON.
>> YEAH, THANK YOU FOR YOUR
COMMENT AND IT'S WELL TAKEN.
YOU KNOW WE AGAIN, THIS
RESEARCH, THE FOCUS IS MORE ON
THE MECHANISTIC SIDE BUT WE NEED
TO BETTER UNDERSTAND THESE
MECHANISMS TO UNDERSTAND WHAT
MITIGATION STRATEGIES, WHAT
INTERVENTIONS MIGHT BE RELEVANT.
WE WOULD WANT THIS TO HAVE THE
REAL WORLD BASIS, SO AGAIN, THIS
TEAM SCIENCE, THIS COMMUNICATION
WITH COMMUNITY MEMBERS WITH
PRACTITIONERS TO REALLY
UNDERSTAND THE ISSUES ON THE
GROUND.
ALSO CAN REITERATE WE'RE
INTERESTED IN MECHANISMS NOT
JUST BIOLONLICAL BUT ALSO SOCIAL
AND STRUCTURAL AS WELL, WHICH
ALSO HAVE INSTANCES ON
AGGRESSIVE BEHAVIOR.
SO DEFINITELY APPRECIATE YOUR
POINT AND ALSO AS WE'RE WORKING
THROUGH INITIATIVE DEVELOPMENT
KIND OF GETTING QUITE SPECIFIC
IN WHAT OUR GOALS AND SCOPES ARE
FOR THE PROJECT SUPPORTED BY
THIS.
NOKAY, YEAH, I WANT TO ECHO WHAT
BOTH OF YOU SAID ABOUT TAPPING
INTO THE LONGITUDINAL DATA
BECAUSE I'M 1 OF THE 21 SITES
THAT COLLECT THE DATA FOR THE
ABCD STUDY AT THEAZ LESSENT
BRAIN STUDY WHERE WE'VE BEEN
COLLECTING DATA IN PREADOLESCENT
STUDIES AGED 9-10 AND ALL THE
WAY ON 19-20, NOW THEY'RE
ALREADY AROUND 17-18 YEARS OLD,
SO WE'VE BEEN COLLECTING
LONGITUDINAL DATA AND BECAUSE OF
WHAT RICH WAS SAYING YOU TRY TO
UNDERSTAND THEM WHEN THEY WERE
REALLY YOUNG AND SEE HOW THEY
EVOLVE, THAT WE ACTUALLY WENT TO
THE NATIONAL INSTITUTE OF
JUSTICE, SO WE ACTUALLY HAVE A
GRANT FROM THE DOJ TO STUDY,
IT'S CALLED THE ABCD SOCIAL
DEVELOPMENT STUDY.
WE INITIALLY WANTED TO CALL IT
THE DELINQUENCY STUDY BECAUSE WE
WERE TRYING TO UNDERSTAND WHY
SOME KIDS BECOME DELINQUENT AND
SOME DON'T BUT IT SOUNDED
NEGATIVE SO WE DECIDED TO CALL
IT SOCIAL DEDEVELOPMENT STUDY
AND BECAUSE WE TRY TO UNDERSTAND
THE RESILIENCE PROTECTIVE RISK
FACTORS, TOO, WHY DO SOME KIDS
GROW UP IN FAMILIES THAT HAVE
PEOPLE WHO ARE ARE INCARCERATED
OR HAVE GUNS IN THE HOUSEHOLD
AND THEY DON'T BECOME AGGRESSIVE
AND SOME DO.
SO THAT DATA IS AVAILABLE RIGHT
NOW BECAUSE IT'S PART OF THE
ABCD DATA SET.
IT'S CURATED EVERY YEAR AND MADE
PUBLICLY AVAILABLE, SO I THINK
IT WOULD BE GOOD TO LINK
SOMETHING LIKE THAT TO THIS
STUDY.
TO ENCOURAGE PEOPLE TO LINK WHAT
THEY WANT TO DO TO THIS STUDY
AND LIKE YOU SAID, I'M NOT SURE
WITH SUCH A BROAD GOAL.
THE GOAL SEEMS TO BROAD.
I THINK EVEN THOUGH THE OTHERS
CDC OR THE D.O.D. OR OTHER
INSTITUTES OR OTHER GOVERNMENT
AGENCY MIGHT BE INTERESTED IN
THIS AS WELL BUT WITHIN NIH WHAT
CAN WE DO, MAYBE WE COULD FOCUS
ON THE YOU KNOW BIOLOGICALS,
NEUROBIOLOGICAL BASIS OR
SOMETHING WHICH I DO AT LEAST
NARROW IT DOWN.
ANDIME STILL NOT SURE, L21 IS
THE BEST MECHANISM,IME MOT SURE
WHAT YOU CAN YOU FUND WITH THAT
>> YES, THANK YOU.
>> YEAH, SEE ANNA MARIA AND
JEAN, SO LET YOU FIGURE IT OUT
NYEAH, THANK YOU.
I THINK WHAT WE'RE COLLECTIVELY
TRYING TO SAY IS THIS IS AN
IMPORTANT TOPIC, THIS IS CLEARLY
A TOPIC THAT THE PUBLIC AND WE
ALL CARE ABOUT AND THE WAY IT'S
WRITTEN I THINK HAS BEG YOUR
PARDON AND PROBABLY WHAT I
UNDERSTAND WHY, HAS BEEN TONED
DOWN BECAUSE OF THE TOPIC AND
THE TOPIC CAN BE VERY
POLITICALLY CHARGED BUT THERE'S
NO QUESTION THAT WHAT WE NEED IS
AN ACCELERATION OF MITIGATION
INTERVENTIONS HERE TO BE ABLE TO
DO SOMETHING, AND I THINK THE
OTHER THING WE'RE HEARING IS
THAT WE PROBABLY NEED MORE THAN
THIS 24 MECHANISM.
WE NEED SOME OTHER TYPES OF
MECHANISMS TO REALLY ALLOW
PEOPLE TO BE CREATIVE, AND TO
ACCELERATE THE INFORMATION
BECAUSE IF WOE CARE ABOUT OUR
FUTURE GENERATION, WE CAN'T
ALLOW THIS KIND OF BEHAVIOR TO
CONTINUE.
IT'S NOT GOOD FOR HUMANITY.
>> IF I COULD BRIEFLY RESPOND TO
THAT, I WANT TO NOTE THIS IS
JUST 1 EFFORT WITHIN A LARGER
VIOLENCE RESEARCH EFFORT THAT'S
OCCURRING ACROSS THE NIH.
SO THERE ARE A NUMBER OF MORE
AMRIED PROJECTS THAT ARE
ONGOING.
AND WE SEE THIS AS COMPLIMENTARY
TO THAT ON A MORE MECHANISTIC
SIDE TO INFORM THOSE EFFORTS
ABOUT I APPRECIATE THE COMMENTS.
THANK YOU.
>> SO I THINK WE'RE ALL SAYING
THE SAME THING, PROBABLY HAVING
US UNDERSTAND THE GREATER
ECOSYSTEM MAY SAMPLE WAIT IS
WE'RE THINKING ABOUT AND AGAIN
IF YOU HAVE JUST A SMALL AMOUNT
OF MONEY AND I KNOW WE'RE FOCUS
ON THE MAKING DECISIONTHAT THEN
YOU NEED TO FECUS MORE BECAUSE
IT'S NOT GOING TO DO THE YOB
CORPS BUT IF YOU CAN FOCUS ON
THIS, WE CAN FOCUS ON SOMETHING
YOU FEEL MIGHT BE THE PHASE 1 TO
GET TO PHASE 2 AND PHASE 3, THAT
MIGHT MAKE SENSE AND IF THERE'S
OTHER GROUPS THAT ARE MOVING THE
LAB AND THERE'S A GAP HAD
TAKEN--THEY MISSING AND WE CAN
HELP IT ANY WAY, THIS IS LIKE
THE URIENCY OF NOW, THIS IS LIKE
TODAY, WHICH IS WHY I AM
SLIGHTLY FRUSTRATED ABOUT HOW
LONG THIS WILL TAKE TO DO THIS
AND GET THE DATA BUT 1 THING WE
DO HAVE RIGHT MOW AND I THINK WE
COULD START ON AND WHAT DAILY
BASIS THEA DO WE CURRENTLY HAVE
FROM TODAYS THAT ARE ALREADY
DONE THAT WE SOMEHOW PUT THOSE
DATA PIECES TOGETHER AND I'M
GOING BACK TO THE DATA CENSUS
AND AI, WE MAY NEED A DATA
CENTER QUICKER THAN ANYTHING TO
USE THE DATA WE CURRENTLY HAVE
BECAUSE THEY MAY MOVE US FASTER
TO WHERE WE WANT TO GO WHILE WE
BUILD ALL THESE OTHER THINGS
BECAUSE WE'RE GOING TO HAVE TO
FLY THE PLANE AS WE BUILD IT.
WE JUST DON'T HAVE THAT LUXURY.
>> MONICA, WE WILL HAVE YOU BE
THE LAST COMMENT.
>> OKAY, REALLY THIS IS A GREAT
THING TO STUDY BECAUSE IT IS
TIMES TO --EASIER TO AT A AWAY
FROM THESE TOPICS BUT WHAT I
WILL SAY IS THE R24 MECHANISM,
EVERYONE'S SAYING EXPLORE AND DO
AN INTERVENTION, FIGURE OUT THE
MECHANISMS BUT WHAT WE ALL
REALLY WANT TO DO IS STOP
OBSERVING AND STOP SHOWING THE
PREVALENCE AND INSTEAD DO
SOMETHING ABOUT IT AND SO I
THINK, I REALLY LIKE THAT
MECHANISM OF THOSE 2 PHASES OF A
PROJECT TO MAYBE UNRAVEL
SOMETHING PATHOPHYSIOLOGICLY AND
THEN GO AHEAD AND SEE
MINDFULNESS OR IF A MEDICATION
OR IF GROUPS OR IF, YOU KNOW
SOMETHING CAN CHANGE THINGS WITH
AN OBLIGATIONS YECTIVE MANNER IN
SELF- RESPORTING PROGRESSION OF
BEHAVIOR, SO ANYWAY THAT,'S 1
POSSIBILITY FOR THE FUTURE.
THE R24 I'VE HAD 1 AND ENDED UP
BEING FOR A MEETING, I KNOW IT'S
A BROAD MECHANISM BUT IT'S
DEFINITE WHATEVER IT EPPEDS UP
BEING IS NOT INTERVENTIONAL.
>> YES, YES.
THANK YOU FOR YOUR COMMENT AND I
PRESHT THE COMMENTS ACROSS THE
COUNCIL ON WHAT THIS MEANS
VERSUS FUTURE STEPS, WE WOULD
HOPE AND APPRECIATE THE
ENTHUSIASM THAT THIS IS
ADDITIONAL WORK WE COULD BUILD
ON.
I THINK WHAT CAME ACROSS FROM
OUR WORKSHOP IS, YOU KNOW,
RESEARCHERS FESTER NEED TO GET
ON THE SAME PAGE AND WHAT
THEY'RE TALKING ABOUT WHEN THEY
SAY THE WORD ARK AGGRESSION,
WHEN THEY TALK ABOUT WHEN THEY
SAY THE WORD MECHANISM, ARE
THERE PARADIGMS MEASURING THE
SAME MECHANISMS, SO THAT IS WHAT
BROUGHT US TO THE R24 FOR THE
RESEARCHERS TO BRING IN, HERE
ARE THE RESOURCES, THE TOOLS,
DATA SETS, TAXONOMIES THAT WE
NEED TO EVEN BE ON THE SAME PAGE
TO FURTHER BUILD THIS
MECHANISMIC RESEARCH AREA EMPLOY
SO THAT WAS OUR GOAL IN THINKING
ABOUT THE R24 BUT I APPRECIATE
YOUR COMMENTS THINKING ABOUT
ADDITIONAL EFFORTS AS WELL.
NKRISTIN I THINK WHAT WE'RE
HEARING IS THAT THERE'S AN
OPPORTUNITY HERE AS WE CONTINUE
TO DEVELOP THE DETAILS OF THIS
CONCEPT TO FOCUS IN ON SOME OF
THOSE SCOPING AND PRIORITIES
THAT WE WANT TO HIT AND I THINK
ACTUALLY YOU JUST OUTLINES SOME
REALLY, REALLY NICELY AT THE
END.
THAT MIGHT BE A GREAT PLACE TO
EVEN FURTHER FOCUS ON JUST A
COUPLE OTHER THINGS THAT CAME UP
THAT I WANT TO CALL OUT.
I THINK IT'S REALLY IMPORTANT AS
A FEW FOLKS HAVE MENTIONED HOW
WE'RE GOING TO INCORPORATE DATA
AND REITERATE BY OTHERS THAT
THERE IS A BIT OF URGENCY TO
THIS.
ALSO THINKING ABOUT MECHANISMS
WHERE WE CAN COORDINATE WITH
THIS DIRECTLY OR OTHER EFFORTS
ACROSS THE INNER AGENCY AND
AGAIN LINKING EXISTING RESOURCES
LIKE ABCD AND I'M SURE THERE ARE
MANY, MANY OTHER STUDIES THAT WE
CAN PULL IN DATA FOR AND THEN,
YOU KNOW WITH CONCEPT
CLEARANCES, WE DON'T
NECESSARILY--THIS IS CLEARING
THE SCIENTIFIC CONCEPT NOT
NECESSARILY HAVING ALL THE
DETAILS WORKED OUT, INCLUDING
SCIENTIFIC THINGS WE TALK ABOUT
HERE, THIS IS WHERE WE HAVE
CONVERSATIONS TO HELP US FURTHER
REFINE, BUT I ALSO WANT TO
MENTION THAT AS PART OF THIS, WE
DON'T NECESSARILY NEED TO SETTLE
ON THE MECHANISM TODAY EITHER
AND SO WE'LL TAKE THE FEEDBACK
THAT YOU ALL HAVE PROVIDED AND
DO SOME, I GUESS FURTHER
AJUSTMENTS TO THE CONCEPT HERE.
BUT I DO WANT TO SEE BECAUSE IT
DOES SEEM LIKE THERE IS GENERAL
SUPPORT FOR THIS CONCEPT IF WE
COULD MOVE FORWARD WITH A VOTE
TAKING THOSE FACTORS IN MIND AND
THEN WE CAN COME BACK AT THE
NEXT COUNCIL MEETING AND UPDATE
YOU ALL ON KIND OF WHERE WE
LANDED WITH IT AND HOW IT HAS
DEVELOPED OVER THE PRECEDING
MONTHS.
DOES THAT SOUND LIKE A VIABLE
PATH FORWARD?
NCAN I ASK ABOUT THAT.
>> SURE.
>> WHAT DOES THAT MEAN IN TERMS
FUNDING SO WE'RE NOT APPROVING
FUNDING WE'RE JUST APPROVING THE
CONCEPT THAT'S CONTINUE
DISCUSSING IT.
NIT WOULD BE APPROVAL FOR THE
CONCEPT WE COULD MOVE FORWARD
WITH THE CONCEPT TO GO OUT AS A
NOFO, I DON'T KNOW WHAT THE
TIMING OF THIS, I DON'T KNOW
WHAT THE TIMING OF THIS WILL BE
IN TERPS OF OUR NEXT COUNCIL
MEETING BUT WE WILL MAKE SURE WE
KEEP EVERYONE UPDATE OFFICE OF
DIVERSITY ITS PROGRESS AS IT
MOVES FORWARD NIF THAT'S THE
CASE, I WILL ADD 1 MORE
QUESTION, WHY IT NEEDS TO BE
GENERAL FUNDS AS OPPOSE TO
COMING FROM NIH OR NIMHOR NINDS,
LIKE THERE'S INSTITUTES THAT
DEAL WITH BEHAVIORIAL SCIENCE
AND WHAT'S--WHAT MAKES THIS A
GENTLEMEN PRONL ECTOMYOSIN THAT
NEEDS OTHER KINDS OF FUNDING?
>> KAREN WOULD YOU LIKE TO
ELABORATE ON THAT FURTHER, WHY
OBSSR IS CONVENING WHETHER OTHER
INSTITUTES SPECIFIC?
NYES, THERE HAVE BEEN INSTITUTES
THAT SUPPORT RESEARCH IN THIS
AREA IN THE PAST BUT IN BRINGING
TOGETHER A GROUP OF, WE HAD WITH
THE 13 INSTITUTE HAVES AND
OFFICES THAT HAVE EXPRESSED
INTERESTING IN THIS TOPIC
REALIZING IT IS REALLY LOTS OF
RELEVANT AND BEYOND MENTAL
HEALTH, BEYOND NEUROLOGICAL
DISORDERS SO WE WANT TO HAVE A
BROADER SCOPE THERE TO BRING IN
MORE CLINICIANS ACROSS FURTHER
INSTITUTE CENTERS AND OFFICES
WRAN WHEREAS IF IT WAS 1 IC IT
WOULD BE MORE NARROW WITHIN
THEIR BROADER SPECIFIC
INSTITUTION AND BECAUSE IT HAS
BEEN BROADER IT HASN'T ALWAYS
HAD CONSISTENT SUPPORT ACROSS
THE EN--STRATEGIESITUTE
TRUSTEESS AND OFFICES, SO THAT'S
IN COORDINATING THE EFFORT.
NALL RIGHT, SO LET ME TRY TO DO
MY BEST TO, LET ME CRAFT EXACTLY
WHAT I HEARD WHEN I CALL FOR A
MOTION.
FOR THE OPROVAL OF THE OBSSR
CONCEPT CLEARANCE ENTITLED:
RECOURSE AND KACCT PAGGITY
BUILDING TO ADVANCE THE SCIENCE
OF AGGRESSION ACROSS SPECY ANDS
DISCIPLINES, WITH SCOPE
ADJUSTMENTS AS NEEDED,
PRIORITIES SET, DATA INCLUDED,
NOW I HAVE TO READ MY OWN
WRITING--RECONSIDERING THE
MECHANISM, COLLAB WAITING WITH
OTHERS, AND SOME OTHER ASPECTS
AND PROVIDE AN UPDATE TO COUNCIL
AT THE NEXT MEETING.
IS THERE SUCH A MOTION?
>> I MOVE IT.
>> SECOND.
>> THANK YOU.
>> SECOND.
>> ADDITIONAL DISCUSSION?
ALL THOSE IN FAVOR, SAY AYE.
AND THOSE ON ZOOM?
>> AYE.
>> AND NOT HEARING ANY
ABSTENTIONS?
>> THANK YOU VERY MUCH SO THE
CONCEPT AS I SAID IT AND WAS
RECORDED IS APPROVED.
THANK YOU VERY MUCH.
BACK TO YOU TARA.
NTHANKS KRISTIN, THANKS
EVERYONE.
SO WE ARE NOW GOING TO HAVE A
SHORT BREAK AND IF YOU'RE
ONLINE, THE FOLKS ONLINE WE WILL
WILL ASK THAT YOU REMAIN LOGGED
IN AND MUTED EMPLOY WE WILL BE
BACK HERE AT 11:15 FOR
PRESENTATION FROM DR. LARRY
TABAK, WHO IS THE PRINCE PALE
DEPUTY DIRECTOR OF NIH.
THANKS FOR THAT REALLY GREAT
FEEDBACK ON THOSE 2 CONACCEPTS.
THAT WAS REALLY HELPFUL.
WELCOME BACK FROM A SHORT BREAK
EMPLOY WE WILL HAVE A LUNCH
BREAK HERE COMING UP IN A LITTLE
BIT.
BUT IN BETWEEN THEN WE
HAVE--WE'RE GOING TO HAVE A
GREAT PRESENTATION FROM
DR. LARRY TARK BAK WHO SERVES AS
THE NIH PRINCIPAL DEPUTY
DIRECTOR AND HE WILL PROVIDE
SOME INFORMATION, I GUESS
GENERALLY ABOUT ACTIVITIES THAT
ARE ONGOING ACROSS NIH AND
PROVOID UPDATES THERE, AS JUST A
LITTLE BIT OF BACKGROUND, FOR
THOSE WHO ARE NOT FAMILIAR WITH
LARRY, HE HAS SERVED IN THE ROLE
OF NIH PRINCIPAL DEPUTY DIRECTOR
AND DEPUTY ETHICS COUNSELOR
BASICALLY SINCE AUGUST OF 2010
FOLLOWING HIS TENURE AS A
DIRECTOR OF NIDCR, NATIONAL
INSTITUTE OF DENTAL AND
CRANIOFACIAL RESEARCH FOR A
DECADE.
DR. LARRY TABAK CONTINUES TO
LEAD AN ACTIVE RESEARCH
LABORATORY, ALTHOUGH HE'S
DWINDLING IT DOWN WITHIN THE NIH
INTRAMURAL PROGRAM, AND STUDIES
GLIBBING O PROTEIN AND MORE IN
ADDITION TO HIS SCIENTIFIC
DUTIES.
I HAVE HAD THE GREAT PLEASURE OF
WORKING WITH LARRY FOR SEVERAL
YEARS INCLUDING WHEN HE WAS
SERVING FROM THE ACTING NETWORK
IH DIRECTOR DURING DIAGRAM
2021-THROUGH JANUARY OF LAST
YEAR AND LARRY'S EFFORTS HAVE
BEEN TRIEWMENTAL FOR NUMEROUS
KEY INITTIAIVE ITS ACROSS NIH
BUT TOO MANY TO MENTION HERE BUT
OBVIOUSLY NAVIGATING THE
COVID-19 RESPONSE WAS 1.
HE HAD BEEN VERY ENGAGE INDEED
EFFORTS TO ENGAGE IF DIVERSITY
IN THE RESEARCH WORKFORCE HAS
LED A NUMBER OF EFFORTS IN THAT
SPACE.
REALLY GRATEFUL LARRY THAT YOU
ARE ABLE TO YOIN --JOIN US HERE
TODAY AND WITH THAT I WILL TURN
IT OVER TO YOU.
NTHANK YOU VERY MUCH.
AND GOOD AFTERNOON, OR GOOD
MORNING.
I'M PINCH HITTING FOR MONICA, HE
IS GETTING ON A PLANE IN SEATTLE
COMING BACK TO THE EAST COAST,
SHE WAS AT THE STRIEBAL COUNCIL
WITH THE SECRETARY AND THAT'S
WHY SHE IS NOT HERE TODAY AND
BUT I AM.
SO AS TARA SAID I WILL GIVE YOU
A QUICK OVERVIEW, BUT ALSO TRY
AND PROVIDE A LITTLE CONTEXT TO
MONICA'S POINTS SINCE THAT'S
WHAT WE'RE INTERESTED IN.
SO BEING I HAVE THE NEXT SLIDE,
I WANT TO COVER QUICKLY SOME
CHANGES AT NIH LEADERSHIP,
SIGNIFICANT AWARDS THAT NIH
STAFF HAVE RECEIVED, QUICK
COMMENT ABOUT THE BUDGET, QUICK
COMMENT ABOUT THE SCIENTIFIC
MANAGEMENT REVIEW BOARD, THE
SMRB.
AND THEN THE BULK OF THE TALK TO
DESCRIBE THE DIRECTOR'S VISION,
ALTHOUGH QUITE FRANKLY TARA
COULD GIVE THAT PART OF THE TALK
MUCH BETTER THAN I CAN SINCE
SHE'S BEEN WORKING CLOSELY ON
THESE THINGS SO IF WE GO TO THE
NEXT SLIDE, PLEASE AND THE NEXT.
SO MANY OF YOU KNOW DR. JOSH
GORDON DEPARTED FROM THE NIRE H,
HE SERVE AS DEPUTY DIRECTOR
SINCE 2016, JOSH WENT HOME, HE
WENT BACK TO COLUMBIA
UNIVERSITY, WHERE HE WILL BE THE
DEPARTMENT OF CHAIR OF
PSYCHIATRY AND PSYCHIATRIST AND
CHIEF.
FORTUNATELY IF I COULD HAVE THE
NEXT SLIDE, DR. SHELLRY
[INDISCERNIBLE] HAS STEPPED IN
AS THE ACTING DIRECTOR OF NIMH.
SHELLLY'S BEEN HERE FOR A NUMBER
OF YEARS IN VARIOUS CAPACITIES,
KNOWS THAT INSTITUTE VERY, VERY
WELL AND WE ARE IN VERY GOOD
HANDS WITH HER AT THE HEAD.
SEARCH COMMITTEE NOT QUITE YET
MOVING OUT BUT WILL BE DOING SO
SHORTLY, AT THE VERY BEGINNING
OF NEXT MONTH SO STAY TUNED FOR
THOSE ACTIVITIES.
NEXT SLIDE, PLEASE.
WE ARE DELIGHTED TO WELCOME
DR. CATHY RIZZO FROM THE
UNIVERSITY OF MARYLAND WHERE WE
WILL RECRUITED HER TO BE THE NEW
DIRECTOR OF THE FOGARTY
INTERNATIONAL CENTER.
THANKS GO TO PETER KILMORE WHO
IS ABLY SERVING AS THE DEPUTY
DIRECTOR DURING THE INTERIM
PERIOD.
CATHY BRINGS A WORTH OF
EXPERIENCE PARTICULARLY IN
INFECTIOUS DISEASE IN VACCINES
AND VERY WELCOME TO HER TEAM.
NEXT PLEASE; WE'VE ALSO RECENTLY
APPOINTED DR. SEAN MOONY WE
STOLE SEAN FROM THE UNIVERSITY
OF WASHINGTON IN SEATTLE.
HE IS DIRECTOR OF OUR CENTER FOR
INFORMATION TECHNOLOGY AND IS
REALLY LEADING AN ENHANCED,
REVITALIZED EFFORT WITHIN CIT
AND WILL PARTNER VERY, VERY
CLOSELY WITH NLM AND WILL
PARTNER VERY CLOSELY WITH DATA
SCIENCE OFFICE WITHIN DPC PSI.
SHAKEN HITS THE GROUND RUNNING
IN LARGE PART BECAUSE OF RENA
DE'SOUZA, AND NLM IS GIVING 1
FOR THE TEAM HERE SO WE'RE
DELIGHTED AND SO NOW A SERIES OF
AWARDS AND STAFF HAVE RECOGNIZED
FOR, NEXT PLEASE.
SO PRESIDENTIAL RANK AWARDS,
THIS IS THE HIGHEST AWARD YOU
CAN SEE WITHIN THE SEC OR CIVIL
SERVICE SYSTEM AND WE HAVE A
PLETHORA OF RICHES HERE.
IT'S VERY UNUSUAL, TO GET MORE
THAN 1 OR 2 AND NIH WAS
DELIGHTED THAT KEITH AND COLLEEN
AND CAMILLE AND JERRY ALL WERE
HONORED IN THIS WAY.
THIS IS A BIG DEAL FOR CAREER
PEOPLE IN THE CIVIL SERVICE
RAIRCHGS.
NEXT PLEASE, THE SECRETARY HAS
AWARDS GIVEN OUT ARE FOR
DISTINGUISHED SERVICE AND SOME
OF YOU MAY KNOW MARSTON LOOH
NEHAN WITH HIS WORK IN KIDNEY
DISEASE RECEIVED HIS
DISTINGUISHED SERVICE AWARD FROM
THE SECRETARY AND IT'S WONDERFUL
TO SEE HIM RECOGNIZED IN THIS
REALM EMPLOY NEXT PLEASE.
SIMILARLY, THERE ARE--HHS CAREER
ACHIEVEMENT ARK WARDS AND
ANDRE WHAT WAS THE RECIPIENT
THIS YEAR AND INITIATIVE CI DID
VERY WELL IN THIS CATEGORY.
AND THEN FINALLY THE TRIFECTA
BRIDGETTE, ALSO RECEIVED THE
SECRETARY'S ASHES WARD PER
MERITORIOUS SERVICE SO NCI WAS
IN A CELEBRATORY MOOD.
NEXT PLEASE.
OKAY, THE BUDGET.
SO, NEXT PLEASE.
SO THIS YEAR THE LEVEL OF
SUPPORT, PROGRAM LEVEL IS 48.85
BILLION DOLLARS, THIS IS A
SLIGHT DIMINUTION FROM FISCAL
YEAR 23.
WE NEED TO PUT THESE NUMBERS
INTO CONTEXT, THIS CURRENT
FISCAL YEAR WAS A VERY, VERY
DIFFICULT YEAR FOR CONGRESS.
THEY HAD VERY FEW DEGREES OF
FREEDOM AND QUITE FRANKLY, EVEN
THOUGH WE NEVER LIKE TO SEE A
NEGATIVE NUMBER IN THE CHANGE
COLUMN, THIS--WE THINK THIS IS
ACTUALLY A VERY STRONG STATEMENT
OF THE SUPPORT OF CONGRESS IN
THAT RANGE, MANY OF THE OTHER
AGENCIES ACROSS THE GOVERNMENT
DID FAR, FAR MORE POORLY, AND SO
WE ACTUALLY WERE PRETTY PLEASED
TO SEE THIS.
THIS WAS IN LARGE PART DRIVEN BY
THE ENDING OF RESOURCES FROM THE
21st CENTURY CURES EFFORT
WHICH WAS NOT BACK FILLED INTO
BASE APPROPRIATION.
THIS I'M SURE YOU TALKED AROUND
THIS TABLE ABOUT SOME OF THE
CONQUENCES OF THE ALL OF US
PROGRAM FOR EXAMPLE, IT ALSO
AFFECTS THE BRAIN INITIATIVE,
WHICH I'M SURE SOME OF YOU A
RE FAMILIAR AND ALSO AFFECTS
THE--WHAT'S THE--ALL OF US,--THE
CANCER MOONSHOT THANK YOU.
SO, SO IN FACT, THE ICs GOT
INCREASES BUT THE BACKFIELD IS
WHAT DROVE THE NUMBER OVERALL.
IF I COULD HAVE THE NEXT SLIDE,
PLEASE.
SO THIS IS THE 25 PRESIDENT'S
BUDGET AS YOU KNOW THIS IS AN
CERTAINLY--CERTAINLY LEKS YEAR,
THIS COMES AS A SURPRISE, BUT
THE PROPOSAL FOR THIS YEAR'S
BUDGET IS QUITE SUBSTANTIAL
AGAIN PARTICULARLY IN THE
CONTEXT THAT WE ALL FIND
OURSELVES IN WITH A PROPOSED
INCREMENTAL 5.7%.
NOW AS YOU ALL KNOW, THE
PRESIDENT PROPOSES AND THE
CONGRESS DISPOSES AND WE DON'T
KNOW WHO ANYBODY'S GOING TO BE
POST ELECTION, SO STAY TUNED
THIS IS OBVIOUSLY GOING TO BE A
LONG PROCESS, YOU KNOW SOME OF
THE PRELIMINARY READ OUT FROM
BOTH THE HOUSE AND THE SENATE
ACTUALLY, YOU KNOW SEEM SOMEWHAT
PROMISING, THE HOUSE IS FLAT,
THE SENATE HAD INCREASED A BIT
AND SO, AGAIN, IN THESE VERY
COMPLICATED FISCAL TIMES, TO
HEAR ANYTHING THAT SPLITTING THE
DIFFERENCE WOULD BE A PLUS IS A
PLUS, SO I WOULD SAY THAT AS YOU
AND YOUR COLLEAGUES HAVE
OPPORTUNITIES TO ENGAGE WITH
LEGISLATORS AND THEIR STAFF, YOU
KNOW THANK THEM, YOU KNOW THESE
ARE TOUGH DECISIONS THEY'RE
MAKING, THIS IS, YOU KNOW
NONTRIVIAL STUFF AND I THINK,
YOU KNOW BY THEIR ACTIONS BOTH
THE CURRENT FISCAL YEAR AND AT
LEAST IN TERMS OF PROYEKSS, THE
NEXT FISCAL YEAR WHICH MAY OR
MAY NOT CHANGE, YOU KNOW THEY
ARE DEMONSTRATING, YOU KNOW
THEIR SUPPORT, WHICH SHOULD BE
GIVEN CREDIT.
NEXT PLEASE.
OKAY, NOW, THE SCIENTIFIC MANAGE
AM REVIEW BOARD, CAN I HAVE THE
NEXT SLIDE, PLEASE.
THE SCIENTIFIC MANAGEMENT REVIEW
BOARD WAS ESTABLISHED QUITE A
NUMBER OF YEARS AGO AND IT WAS
PART OF THE 21st CENTURY CURES
AND IT ADVISES AND MAKES
RECOMMENDATIONS TO THE SECRETARY
AND TO THE NIH DIRECTOR ON THE
USE OF OUR ORGANIZATIONAL
AUTHORITIES AND THEY RUN THE
GAMUT FROM, YOU KNOW DIFFERENT
RESEARCH INSTITUTES TO OFFICES
WITHIN THE OFFICE OF THE
DIRECTOR, TO DIVISION CENTERS
AND ADMIN TRAITIVE INSTITUTES
AND CENTERS, SO REALLY
THROUGHOUT THE ORGANIZATION,
THIS BODY IS SUPPOSED TO OPINE
ON HOW WE CAN ADVANCE, HOW WE
CAN IMPROVE, HOW WE CAN
STREAMLINE OUR EFFORTS.
AND BACK IN THE PREVIOUS
ADMINISTRATION, IT WAS
DETERMINED THAT THE ADVISORY
COMMITTEE TO THE DIRECTOR COULD
PROBABLY TAKE ON THESE KINDS OF
QUESTIONS IF THERE WAS A NEED TO
CONSIDER IN OF THESE THINGS AND
SO, THE SCIENTIFIC MANAGEMENT
REVIEW BOARD WITH TIME WAS SORT
OF NOT USED AND FELL INTO
DISUSE.
IN THE PREVIOUS ADMINISTRATION
THERE WAS A DESIRE TO REDUCE THE
NUMBER OF FACA COMMITTEES ACROSS
GOVERNMENT, THEY WANTED TO
ELIMINATE MANY COMMITTEES HERE
AT NIH AND AS A COMP PROMISE IF
YOU WILL, WE OFFERED THE
SCIENTIFIC MANAGEMENT REVIEW
BOARD AS 1 THAT COULD BE
ABOLISHED FOR REASONS THAT I
WON'T BORE YOU WITH, THAT NEVER
HAPPENED.
SO IT STAYED ON THE BOOKS BUT IT
HAS BEEN DORMANT SKINS 2016.
THE CONGRESS OBSERVED THIS, WAS
NOT ALL THAT HAPPY AND HAD
EXPLICITLY IN THE 2024 LANGUAGE
TOLD US TO RESTART IN COMMITTEE
WITHIN 1 YEAR OF THE
APPROPRIATION OF 24.
SO ON NOVEMBER 14th, WE INDEED
WILL BE RESTARTING THIS
COMMITTEE, WE HAVE GONE THROUGH
THE PROCESS OF BRINGING ON
MEMBERS AND GETTING THEM VETTED
AND SO FORTH AND THERE WILL BE
REVIEWING AS A SORT OF FIRST
PASS 2 IMPORTANT REPORTS THAT
CONGRESS HAS PREPARED, 1 FROM
THE HOUSE ENERGY AND COMMERCE
COMMITTEE, BASED ON THEIR
RECOMMENDATIONS ON HOW NIH WOULD
BE BEST REORGANIZED AND
SIMILARLY ON THE SENATE SIDE
FROM THE HEALTH COMMITTEE ALSO
OFFERING THEIR RECOMMENDATIONS
AND SUGGESTIONS.
I HAVE TO SAY THAT MANY OF THE
RECOMMENDATIONS FROM BOTH
REPORTS RESONATE.
THERE ARE THINGS WE HAVE BEEN
TRYING TO DO, THERE ARE THINGS
WE HAVE BEEN WANTING TO DO,
THERE ARE SOME RECOMMENDATIONS
THAT WERE LESS ENTHUSIASTIC
ABOUT, BUT AGAIN, YOU KNOW WE
ARE OPEN TO ANY AND ALL
CONVERSATION OF DISCUSSION
BECAUSE AT THE END OF THE DAY
AND I'M SURE YOU ALL SHARE THIS
WITH US, WE WANT THIS PLACE TO
RUN AS EFFICIENTLY AND
EFFECTIVELY AS POSSIBLE.
ENTIOUS FICIENCY TRANSPLATES
INTO MORE DOLLARS FOR YOUR
SEARCH AND THAT'S WHAT THE
EAMTIONS ALL ABOUT.
IT TRANSPLATES INTO WHAT
TRAINING AND THAT'S WHAT WE'RE
ALL ABOUT, AND SO, YOU KNOW
SOMEBODY HAS A BETTER IDEA HOW
DO SOMETHING, WE ARE OBLIGATED
NOT ONLY TO LISTEN BUT REALLY TO
COME WRESTLE WITH IT AND SEE
WHAT MIGHT BE DONE.
SO THAT'S HOW WE'RE GOING TO
APPROACH THIS.
WE HAVE THIS BOARD OF
INDIVIDUALS, THESE MEETINGS WILL
BE OPEN, THIS BACA MEETING, THE
LINKS TO THE MEETING AND SO
FORTH WILL ALL BE MADE AVAILABLE
TO YOU AND PROBABLY WITHIN YOUR
MAIL CONTROLLER OF BANKS CAME AN
ANNOUNCEMENT THIS MORNING.
OKAY.
NEXT PLEASE.
AND SO NOW THE DIRECTOR'S
VISION, HONESTLY TARA YOU SHOULD
DO THIS, BUT OKAY, LET'S GO, SO
AS YOU KNOW MONICA IS THE SECOND
WOMAN TO BE A DIRECTOR AND SHE
IS A SURGEON AND YOU KNOW WHAT
IT IS WHEN YOU ARE DEALING WITH
A SURGEON.
OKAY.
YES, MONICA IS THE PROTOTYPICAL
SURGEON.
SO, WHY WASN'T IT DONE 3 DAYS
AGO AND WHAT DO YOU MEAN 5 AMIS
AN EARLY MEETING?
I MEAN, SO, YOU KNOW, YOU GET
THE LAND CAPE HERE.
MONICA CAME IN AND HIT THE
GROUND RUNNING.
NEXT, PLEASE.
NEXT AGAIN, YEAH, SO SHE CAME IN
AND SHE MADE THE OBSERVATION
THAT OUR WORK ISN'T FINISHED
WITH WE DELIVER DISCOVERIES, OUR
WORK IS FINISHED WHEN
EVERYBODY'S LIVING LONG AND
HEALTHY LIVES.
SO BASICALLY ALL THOSE GREAT
CELL SCIENCE AND NATURE PAPERS
THAT YOU HAVE, GREAT BUT UNTIL
IT MAKES SOMEBODY HELTIER, WE
HAVEN'T FINISHED THOUGH, PRETTY
GOOD MESSAGE FOR EVERYBODY TO
HEAR.
NEXT, PLEASE.
AND THEN THE SECOND THING SHE
SAID RIGHT OUT OF THE GATE,
WHICH YOU KNOW TO SOME PEOPLE
WAS MUSIC TO THEIR EARS AND
OTHER PEOPLE WERE WONDERING
WHAT'S THIS ALL ABOUT?
NIH RESEARCH ENCOMPASSES THE
LAB, THE CLINIC AND THE
COMMUNITY.
AND IF THE PANDEMIC TAUGHT US
ANYTHING, THE SIGNIFICANCE AND
IMPORTANCE OF THE COMMUNITY, 1
WONDERING IF IT SHOULD BE THE
COMMUNITY, THE CLINIC AND THE
LABORATORY BUT IN ANY EVENT,
THAT'S HOW IT'S WRITTEN HERE AND
SO IF I CAN HAVE THE NEXT SLIDE
ISSUE PLEASE.
YEAH, THE OBSERVATION AND THIS
IS 1 THAT WILL NOT SURPRISE
ANYBODY IN THIS ROOM, IS
CERTAINLY NOT ANY OF THE
COMMITTEE MEMBERS AROUND THE
TABLE, THAT LACK OF ACCESS OF
COURSE IS A MAJOR BARRIER NOT
ONLY TO RESEARCH PARTICIPATION,
BUT FOR THE ABILITY TO GET
ACCESS TO THE VERY BEST CARE
EMPLOY AND SO AGAIN, THOSE THAT
ARE TRADITIONALLY UPDATER
REPRESENTED ARE OFTEN
UNDERIMMEDIATELY SERVED,
DISPROPORTIONATE, THESE ARE
THINGS YOU ALL KNOW.
LACK OF ADEQUATE REPRESENTATION
COMPROMISES THE GENERALIZABILITY
OF RESEARCH OUTCOMES AND
COMPOUNDS IN HEALTH DISPARITIES
AND THERE IS A OPPORTUNITY TO
EXPAND BROADER COMMUNITIES WITH
A SUSTAINED RESEARCH
INTRANSLATIONAL RESEARCH
SPHRUCTURE BUT THE ONLY WAY TO
DO THAT IS TO PROVIDE REAL
RESOURCES FOR INFRASTRUCTURE AND
IT AT AS, IT CAN'T BE PARACHUTE
IN, BUILD SOMETHING AND THEN
PULL IT ALL UP WHEN YOU LEAVE.
IN ORDER FOR US TO ENGAGE IN A
TRUSTWORTHY WAY.
IN ORDER FOR US TO MAKE A REAL
DIFFERENCE IN COMMUNITIES THAT
DON'T HAVE ACCESS TO THESE TYPES
OF FACILITIES, WE HAVE TO
PROVIDE IT AND SO THIS, IS A BIT
OF A CHANGE IN HOW THE NIH IS
LOOKINGA THE THINGS, NOT ALL OF
NIH, THERE ARE SOME INSTITUTES
AND CENTERS THAT HAVE ALREADY
BEEN INVESTING IN THIS SPACE,
BUT I WOULD SAY NOT THE MAIORITY
OF THEM XSO THIS REPRESENTS A
BIT OF A CHANGE.
NEXT PLEASE.
SO HERE VISION IS CO COB NECT
RESEARCH TO PRIMARY CARE TO
PATIENTS AND EXPAND BY O MEDICAL
DAT RESEARCH TO NOT ONLY IMPROVE
RESEARCH BUT IMPROVE HELT
OUTCOMES.
NONAPOPTOTIC YOU REGARD TO THE
FIRST BULLET, I DON'T KNOW IF
ANY OF YOU ARE PRIMARY CARE DOCS
BUT I CAN SEE YOUR HEAD
EXPLODING, 1 MORE THING THEY
WANT TO ME TO DO IN BETWEEN 30
PATIENTS I HAVE TO SEE 15
MINUTES A PIECE AND THERE'S A
REALITY CHECK HERE WE HAVE TO
COME TO GRIPS WITH.
IN ORDER TO GAIN PRIMARY CARE
ENTITIES WE AGAIN, HAVE TO BE
ABLE TO PROVIDE THE RESOURCES
THAT WILL SUPPORT THEM SO THAT
CLINICIANS IN PRIME AREY CARE
SETTINGS CAN PARTICIPATE BUT IN
A WAY THAT MAKES SENSE TO THEM,
VIS A VIS THEIR OTHER
RESPONSIBILITIES, IT JUST CAN'T
BE OH DOE IT OUR WAY BECAUSE WE
KNOW HOW TO DO IT.
IN FACT, WE DON'T AND WE'RE
GOING TO HAVE TO LEARN FROM EACH
DIFFERENT PRIMARY CARE SETTING
AS TO WHAT THE BEST WAY IS TO
SORT OF CRAFT THIS TO ENABLE
GROUPS TO ENGAGE.
AND OF COURSE, YOU KNOW DATA IS
GREAT FOR PUBLISHING PAPERS, BUT
IT'S EVEN GREATER IF WE USE IT
TO MAKE PEOPLE HEALTHY.
NEXT PLEASE.
OKAY, ALL RIGHT, TARA, YOU ARE
GOING TO DRIEB THIS.
BECAUSE WE'RE INTIMATELY INVOLVE
WIDE THIS.
NSERIOUS, OKAY.
>> OKAY, I DID USE THIS SLIDE
YESTERDAY FOR 2 DIFFERENT
PRESENTATIONS SO, ANYWAY, AS
LARRY MENTIONED WE'RE TRYING
TO--WE'RE IN THE PROCESS AND YOU
ALL HAVE HEARD ABOUT THIS,
MONICA TALKED ABOUT THIS THE
LAST TIME WE HAD COUNCIL MEETING
AND IN GREAT DETAIL BUT WE HAVE
NOW, SORT OF OFFICIALLY LAUNCHED
AND ARE IN THE PROCESS SOON OF
MAKING AWARDS IF ARE A NETWORK
THAT WE'RE BUILDING TO HIT AT
SOME OF THE IDEAS THAT LARRY
TALKED ABOUT.
THIS IS OUR CARE FOR HEALTH
INITIATIVE, OUR COMMUNITIES
ADVANCING RESEARCH EQUITY FOR
HEALTH, WHAT WE'RE BASICALLY
TRYING TO DO IS LINK MORE CLOSE,
MUCH MORE CLOSELY PRIMARY CARE
SETTING WITH OPPORTUNITIES TO
PARTICIPATE IN CLINICAL RESEARCH
AND SO, WE'RE TRYING TO HELP TO
BUILD UP THE TRUST THAT LARRY
MENTIONED, SO WE'RE NOT JUST
POPPING IN, POPPING OUT, WE'RE
BUILDING TRUST BY ADDRESSING THE
COMMUNITY'S NEEDS AND MAKING A
NETWORK THAT WE HOPE WILL BE
SUSTAINABLE AND DURABLE AND IN
IT FOR THE LONG HALL AND
ESSENTIALLY WHAT WE'RE DOING IS
GOING TO BE OFFERING SORT OF A
SUITE OF, A MENU IF YOU WILL, OF
STUDY OPTIONS THAT SITES CAN
THEN DECIDE WHICH 1S THEY WISH
TO PARTICIPATE IN AND SELECT
THOSE THAT BEST MEET THEIR
COMMUNITIES NEEDS.
THEY'LL ALSO BE OPPORTUNITIES
FOR IDEAS TO BUBBLE UP FROM THE
COMMUNITIES THEMSELVES BUT WE'RE
STARTING INITIALLY WITH THIS
APPROACH.
WE ALSO WANT TO MAKE SURE WE'RE
ADDRESSING THOSE ISSUES THAT ARE
REALLY IMPORTANT TO DIVERSE
POPULATIONS AND DIVERSE
COMMUNITIES ACROSS UNITED STATES
AND PARTICULARLY THOSE THAT ARE
UNDERREPRESENTED IN BIOMEDICAL
RESEARCH TRADITIONALLY.
AND WE'RE STARTING INITIALLY,
THE WHOLE EFFORT REALLY IS A
PILOT AND WE'RE STARTING KIND OF
NARROW AND DEEP, BUT IN TERMS OF
POPULATION, TARTING IN RURAL
COMMUNITIES, INITIALLY.
HOPEFULLY WE WILL TAKE HEED OF
WHAT LARRY SAID ISSUES THE DATA
IS THAT A PRIMARY CARE PROVIDERS
ABOUT 15 MINUTES WITH EACH
PATIENT AND ABOUT 8 OF THAT IS
FOR COLLECTING THE REQUIRED
INFORMATION JUST FOR INSURANCE
AND BILLING PURPOSES SO THAT
DOESN'T LEAVE MUCH TIME FOR
ACTUALLY TREATING YOUR INJURED
KNEE OR DIABETES OR WHATEVER YOU
ACTUALLY WENT TO THE PRIMARY
CARE DOC FOR.
WE WE WANT TO MAKE SURE AS WE
BUILT THIS OUT THAT WE'RE
CONSIDERING THE BURDEN
NONPROVIDERS AND BEING ABLE TO
INCORPORATE NOVEL NEW DATA
COLLECTION METHOD ANDS OTHER
APPROACHES AND HAVING THAT BE
KIND OF 1 OF THE THINGS AT THE
TOP OF OUR MIND AS WE'RE
BUILDING UP THIS NETWORK BECAUSE
ULTIMATELY THE GOAL IS REALLY TO
BRING EVIDENT BASED CARE
EFFICIENTLY AND EFFECTIVELY TO
PATES.
SO MAB I WILL TURN IT BACK TO
LARRY.
NOKAY, YOU'RE ON A ROLL.
GO TO THE NEXT SLIDE, PLEASE.
SO THE SECOND BULLET ON THE
SLIDE IN TERMS OF SCIENTIFIC
DATA, THIS IS THE NEXT PRINCIPAL
THAT MONICA HAS ESPOUSED AND
THAT IS THAT PROGRESS IS
ACCELERATED WHEN ADVANCED
SCIENTIFIC METHODS SUCH AS NEW
DATA ANALYTICS APPLY TO DATA
THAT INN CLUEDS EVERYONE AND
WHEN NEW DISCOVERIES ARE RAPIDLY
AND EQUITABLY ADOPTED IN
CLINICAL TRIALS.
SO WHEN UNPACK THAT, THE FIRST
PART MEANS IN THE DATA SET IS
JUST COMPOSED OF PEOPLE WHO LOOK
EXACTLY LIKE ME, IT'S NOT GOING
TO BE VERY GENERALIZABLE.
AND THE SECOND PART IS THAT IF
WE DEVELOP A TREATMENT AND OF
COURSE A MILL YEN DOLLARS, IT'S
NOT GOING TO HELP THE UNINSURED
VERY MUCH AND SO WE'VE GOT TO
HIT BOTH SWEET SPOTS, WE HAVE TO
INSURE THAT OUR DATA SETS ARE
UNCOMPASSING OUR ENTIRE
POPULATION SO THAT HAY ARE
GENERALIZABLE AND CAN BE USEABLE
AS WE HAVE MORE DATA SETS, AND
DATA SETS ARE UNBIASED TO BEGIN
WITH BECAUSE AS YOU ALL KNOW, TO
TRAIN OUR ALGORITHM WITH BIASED
DATA, GUESS WHAT, YOU WILL GET
THE BEST ALGORITHM AND IN TERMS
OF THE EQUITABLE ADOPTION, A
TREATMENT THAT NOBODY IS ABLE TO
AFFORD IF THEY ARE FOR EXAMPLE,
UNINSURED, YOU KNOW THATY'S NOT
GOING TO SOLVE THE REAL ISSUES
SO BOTH OF THESE HAVE TO BE
CONSIDERED.
NEXT PLEASE.
SO CENTRAL TO SOME OF THIS IS
THE NATIONAL LIBRARY OF
MEDICINE.
WE ARE CURRENTLY IN THE END
STAGE OF A SEARCH FOR A NEW
PERMANENT DIRECTOR FOR THE
NATIONAL LIBRARY OF MEDICINE.
DR. STEVE SHERRY HAS BEEN
MAGNIFICENT IN HIS ROLE OF
ACTING DIRECTOR AND WE'RE VERY,
VERY GRATEFUL TO HIM
PARTICULARLY SINCE WE STOLE
[INDISCERNIBLE] FROM HIM, SO GO
LOOK AT CIT.
WE VIEW THE LIBRARY OF MEDICINE
AS SORT OF THE EPICENTER FOR ALL
OF NIH FUNDED RESEARCH.
THEY ARE GOING TO ADVANCE
INFORMATION SCIENCE AND THEY
WILL CONTINUE TO, YOU KNOW PUSH
THE BOUNDARIES OF DATA SCIENCE.
CENTRAL TO ALL OF THIS IS TO
MAKE SURE THAT EICATIONAL
PROGRAMS ARE EXPANDED EQUITABLY
ACROSS THE NATION.
AGAIN, YOU KNOW PICK YOUR
FAVORITE [INDISCERNIBLE]
TERBIARY ACADEMIC CENTER ON THE
COAST AND MAYBE 1 OR 2 CATERED
IN THE MITSD OF THE COUNTRY.
THAT'S NOT GOING TO MAKE IT.
WE HAVE TO DO MORE THAN THAT.
WE HAVE TO MAKE SURE THAT THE
TOOLS FOR ANALYTICAL COMPUTATION
ARE SPREAD THROUGHOUT THE ENTIRE
COUNTRY AT PLACES THAT PERHAPS
ARE NOT AS WELL FUNDED BY NIH,
WE'RE GOING FORWARD IF YOU THINK
OF UNDERRESOURCED INSTITUTIONS,
WHAT BETTER TO DO THAN GET THEM
INVOLVED IN THIS TYPE OF EFFORT
WHERE YOU DON'T NEED MASS SPECS
NMRs, ET CETERA, YOU NEED A
LAPTOP AND A LEGALLY GOOD LINK
TO THE CLOUD AND YOU CAN DO A
LOT OF AMAZING WORK AND WE ARE
FINDING THAT INSTITUTIONS ARE
EMBRACING THAT, THEY WANT TO BE
INVOLVED.
AND SO THAT'S SOMETHING THAT WE
HAVE TO CONTINUE TO ACCELERATE.
WE DON'T WANT ALL OF YOUR DATA
IN OUR CLOUD WE WANT ACCESS TO
IT BUT WE DON'T AT ANY POINT IN
OUR CLOUD.
THERE ISN'T A BIG ENOUGH HARD
DRIVE IN THE KAY TO TAKE ALL OF
YOUR DATA AND I SAY YOUR DATA I
MEAN ALL OF THE DATA BUT BY
HAVING A FEDERATED SYSTEM AND BY
USING SMART APPS TO GET IN AND
GET OUT WHAT NEEDS TO BE
COMPUTED UPON IN A SAFE ASK
SECURE ENVIRONMENT, NOW HAVE YOU
A SCENARIO WHERE THE POWER OF
BEING ABLE TO INTERPRET MULTIPLE
DATA SETS OF DISPARATE TYPES IS
REALLY CLOSE TO THE FOREFRONT.
AND FINALLY, WE WANT TO PRORIDE
A FRONT DOOR IF YOU WILL WHERE
BIOMEDICAL, CLINICAL RESEARCH,
DOMAIN EXPERTS, TRAINEES,
PATIENTS, ADVOCATES, ANYBODY
HAVING A QUESTION CAN
INTERROGATE THE CORPUS OF DATA
WE HAVE AT OUR DISPOSAL,
PROVIDING THEM WITH HOPEFULLY
THE TOOL ANDS THE TRAINING TO
USE THE TOOLS BECAUSE I DON'T
KNOW IF THE NEXT IDEA IS GOING
TO COME FROM A COLLEGE
SOPHOMORE, YOU KNOW IN THE
MIDDLE OF THE COUNTRY OR IF IT'S
GOING TO COME FROM RETIRED
EMERITUS PROFESSOR WHO IS NOW
LIVING WHEREVER, YOU DON'T KNOW
WHERE THE NEXT GREAT IDEA IS
COMING FROM.
AND POWERING ALL OF THIS, OF
COURSE IS ACCESS TO THE DATA.
SO THIS IS THE VISION FOR THE
NLM, THEY ARE DOING IMPORTANT
WORK NOW, WE ENVISION THEM DOING
EVEN MORE IMPORTANT CO-WORKERS
GOING FORWARD AND THERE WILL BE
THIS VERY IMPORTANT AND
INTEGRATED RELATIONSHIP AMONG
NLM AND CIT, AND THE DATA
SCIENCE OFFICE WITHIN DPC PSI,
AS WELL AS ALL THE OTHER
CENTERS
AND OFFICES.
AND THE FINAL PIECE IS THAT
CURIOSITY DRIVEN DATA SCIENCE IS
REALLY IMPORTANT.
AND JOHN AND MONICA AND I
PUBLISHED THIS PAST WEEK, AND
IT'S APPLIED RESEARCH WON'T
FLOURISH WITHOUT BASIC SCIENCE,
BUT THERE ARE PEOPLE IN CONGRESS
WHO WANT TO KNOW WHY WE DON'T
JUST DO THE RESEARCH FOR THE
PILL.
WE HAVE TO DO ALL THIS FLY
STUFF, WHY DO WE CARE ABOUT
FRUIT FLIES AND ET CETERA, SO
FUNDAMENTAL RESEARCH IS REALLY
IMPORTANT.
AND THIS WE HOPE WILL YOU KNOW
SEND A MESSAGE BOTH TO OUR
RESEARCH COMMUNITY BUT ALSO, YOU
KNOW TO POLICY MAKERS THAT YES,
NIH STILL THINKS THIS IS
IMPORTANT.
NEXT, PLEASE.
SO, THERE YOU ARE.
I HAVE THEREFORED ONTIME AND
UNDERBUDGET.
ANY QUESTIONS THAT THE GROUP MAY
HAVE, I WILL HAVE TARA ANSWER
ALL THE QUESTIONS, SO YES,
PLEASE.
>> THANK YOU SO MUCH, THANK YOU
TARA FOR THIS PARTICULARLY, THIS
MAP THAT YOU'VE SHOWN.
IT MAKES ME FEEL A LOT BETTER
LEAVING THIS COMMITTEE NEXT
YEAR.
OKAY, YOU GET IT.
THE ISSUE THAT I SEE HERE IS
THAT YOU'VE OUTLINED A GREAT
MECHANISM AND PROCESS THAT NEEDS
TO BE IN PLACE AND NEEDS TO BE
WHAT I WOULD CALL MAYBE THE
FRAMEWORK THAT NIH OPERATES
UNDER GOING FORWARD.
I APPLAUD THAT TREMENDOUSLY.
I THINK THAT'S SO IMPORTANT
BECAUSE YOU ARE PART OF THE
SYSTEM, YOU ARE NOT THE ONLY
PART OF THE SYSTEM, BUT YOU ARE
PART OF THE SYSTEM.
WITH THAT BEING SAID, I WOULD
HOPE WITH THE MATERIALS THAT YOU
ALSO ARE NOT SEEING OR HEARING
ALIGNMENT WITH THE PARTNERS.
SO FOR EXAMPLE, YOUR
NATIONAL--THE NATIONAL ACADEMY
OF MEDICINE HOW DOES THAT PLAY
WITH THE NATIONAL LIBRARY OF
MEDICINE?
I THINK THAT'S REALLY IMPORTANT
BECAUSE THERE ARE ALL THESE
DIFFERENT FACTIONS OUT THERE
THAT WOULD LIKE TO BE SUCCESSFUL
BUT CAN'T DO IT AS A SINGLE
ENTITY.
THE OTHER THING IS YOU TALK
ABOUT DATA, WOW, THAT YOU IS
EXCEPTIONALLY IMPORTANT AND I
ALSO WANT TO YOU TO THINK ABOUT
THERE MANY SOURCES OF DATA THAT
ARE OUT THERE AND AGAIN THIS'
WHERE THE PARTNERSHIPS COME IN
AND WHEN YOU TALK ABOUT THIS
FEDERATED TYPE OF PROCESS,
THAT'S VERY IMPORTANT BECAUSE
THE ABILITY TO DUMP IT ALL IN 1
PLACE IS NOT GOING TO WORK IN
ANY WAY SHAPE OR FORM, BUT
HAVING ACCESS TO IT, AND BEING
ABLE TO USE THE DATA TO TRY AND
ANSWER CERTAIN QUESTIONS HAS
REALLY FOUND TO BE VERY
SUCCESSFUL AS ALL OF US IS
DEMONSTRATING WITH THE DATA THAT
IT HAS IN THAT REGARD.
I HOPE THAT THIS DOESN'T DIE.
I HOPE THIS GOES FORWARD.
I THINK THERE IS--THIS IS THE
TIME TO DO THIS BUT I SEE THAT
ALSO IT IS THE TIME THAT THERE
WILL BE PRESSURE TO GET THIS
ACCOMPLISHMENT OCCURRED SO I
HOPE IT WILL HAVE THE PRIORITY
THAT IT NEEDS INDEED THE
ORGANIZATION IN ORDER TO DEMON
TRAIT TO THE OUTSIDE ORGANIZE
EGG.
YOU TALKED ABOUT REDUCING THE
BURDEN ON PROVIDERS, THAT IS A
VERY BUSY AREA AND AGAIN, THAT'S
1 AREA WHERE THERE IS A NEED FOR
PARTNERSHIP BECAUSE THERE'S A
LOT OF ORGANIZATIONS AND
ENTITIES THAT ARE WORKING ON
THOSE THINGS AND I THINK IF YOU
TAKE YOUR CARE FOR HEALTH AND
START LABELING PARTNERS IN THAT
AND START PURSUING THOSE
PARTNERS, THAT WILL BRING MORE
STRENGTH TO THIS IDEA BECAUSE
YOU'RE COORDINATING IT, YOU'RE
LAYING IT OUT.
NOT ALL ORGANIZATIONS AND MANY
ORGANIZATIONS ARE LOOKING AT IT
BROADLY IN THIS PERSPECTIVE AND
COMMUNICATION IS SO IMPORTANT IN
HOW YOU ARE PERCEIVED EMPLOY YOU
ARE AN ORGANIZATIONS MYSELFATION
THAT IS TRUSTED, YOU ARE AN
ORGANIZATION THAT GETS THE DATA.
WHERE IT'S NOT SO CLEAR IS
WHETHER OR NOT YOUR DATA IS
TRANSLATED INTO INFORMATION OR
USEABLE INFORMATION.
IF THAT PIECE COULD BE SOLVED,
THAT WILL HELP TREMENDOUSLY IN
TERMS OF CLOSING THE GAP ON THAT
17-IERS THAT -YEARS I TOLD YOU T
EARLIER TODAY.
SO THANK YOU SO MUCH.
THANK YOU TARA.
THANK YOU LAWRENCE FOR THIS
BECAUSE THIS REALLY ARK LOWS ME
TO SLEEP AT NIGHT EMPLOY THANK
YOU.
NTHANK YOU SO MUCH FOR THOSE
COMMENTS.
YES, PLEASE?
OKAY, WHOEVER--
>> YOU WANT ME TO--
>> WHY DON'T YOU REFEREE.
>> YEAH, SO I HAD NOTED ACTUALLY
KENT FIRST AND THEN WE WILL TURN
TO BARBARA.
AND THEN TO RUSS AND OTHERS.
ACTUALLY, YOU KNOW, I WAS GOING
TO MENTION THIS EARLIER, 1 OF
THE EASY WAYS TO DETECT THAT IS
TO JUST POP THE TENT CARDS UP
AND--BRINGING OLD IS NEW AGAIN,
TECH.
YEAH.
ALL RIGHT SO WE'LL GO WITH KENT
NEXT.
>> THANKS.
SORRY NOT TO BE THERE, QUICK
QUESTION.
ONE IS I'M FLAD YOU BROUGHT UP
THE HOUSE, ERNEERGY AND SENATOR
COMMITTEE AND THEIR REPORT AND
IT'S OUT ON TREAT, A LOT OF
DISCUSSION WITH DIFFERENT
ORGANIZATIONS, DPLAD TO SEE THE
REINSTITUTION AND THE SMRB WHICH
IS A RECOMMENDATION AND JUST TO
SAY THAT IT WILL BE GREAT.
I THINK THEY WILL LOOK AT THOSE
REPORTS BECAUSE AS YOU SAID OF
THOSE 22 RECOMMENDATIONS, THERE
ARE SEVERAL THAT ARE WORTHY, BUT
THERE'S OTHERS THAT ARE MORE
CONCERNING AND SO, JUST TO SAY,
LOOKING AT THAT, I THINK IS A
GOOD BUT INSTEAD OF JUST
REACKING, IT MAY BE GOOD TO LOOK
AT NEW THINGS THEY MAY NOT HAVE
THOUGHT ABOUT.
THE SECOND THING IS YOU MENTION
THE COMMUNITY ENGAGEMENT, THE
CARE FOR HELP, AND NEED FOR
BEING SURE THAT NIH PROVIDES THE
INFRASTRUCTURE AND DOESN'T JUST
PACK UP AND LEAVE WITH THE
PROGRAM'S OVER.
I THINK THAT'S ALWAYS BEEN A
TRUGLE FOR NIH IN TERMS OF
SUSTAINABILITY FOR IMPORTANT
RESOURCES, COMMON FUND OPERATES
THAT WAY AFTER 10 YEARS, YOU'RE
DONE, YOU HAVE TO FIND OTHER
SUPPORT.
DATABASES ARE AN ISSUE,
SUPPORTING THOSE IN THE LONG
RUN, YOU KNOW THE CHIMPANZEES
ARE ANOTHER THING.
SO WOULD SAY THAT'S SOMETHING
THAT NEEDS TO BE THOUGHT OF AS
HOW TO DO THAT BUT WITH THE SAME
THING WITH THE INFRASTRUCTURE IN
THE COMMUNITY THERE IS A
SUSTAINABLE MODEL.
THERE ARE WAYS TO DO IT AS YOU
KNOW, BUT HOPEFULLY, IT'S PART
OF A DISCUSSION EARLY ON BEFORE
WE GET TO THAT POINT AND LASTLY,
VERY MUCH SUPPORT YOUR LAST
SLIDE IN TERMS OF REINFORCING
THE IDEA THAT BASIC RESEARCH AND
ESSENTIAL FOR MAKING PROGRESS IN
HOW WE MOVE FORWARD AND MORE
TRANSLATIONAL RESOURCE, SO
REALLY APPRECIATE THAT EMPHASIS,
TOO.
THANK YOU VERY MUCH.
>> THANK YOU FOR THOSE COMMENTS.
NDPRAIT.
THANKS KENT.
WE WILL GO TO BARBARA AND THEN I
HAVE RAFAEL--NO EXCUSE ME RUSS
THEN LAUREN THIS RAFAEL.
BARBARA.
NTHANK YOU THIS IS BARBARA
KELLY, AND I WANT TO SAY THANK
TO YOU KENT FOR YOUR COMMENTS.
WHAT IS THE PURVIEW OF THIS
COUNCIL WITH INPUT INTO THOSE
DECISIONS OR HOW DO WE WE REACT
TO THAT AND FOR EXAMPLE,
ESPECIALLY WITH THE DISABILITY
RESEARCH ACROSS NIH, IT'S GOING
TO HAPPEN, I DON'T KNOW HOW MANY
INSTITUTES DEAL WITH DISABLES,
BUT IS THAT THE TYPE OF THING
THAT THEY WOULD GROUP ALL THOSE
TOGETHER FOR A NEW INSTITUTE
OR--
>> IT'S UNCLEAR.
I DON'T WANT TO PRESUPPOSE WHAT
THIS NEW GROUP OF INDIVIDUALS IS
GOING TO COME UP WITH BUT IT IS
A FACA COMMITTEE WHICH MEANS IT
WILL BE DONE IN A TRANSPARENT
OPEN WAY.
YOU WILL GET REGULAR BRIEFINGS
ABOUT THE SMRB JUST AS WE WILL
BRIEF THE ACD AS WELL.
AND WHERE THIS BODY FEELS THEY
SHOULD WEIGH IN ON ONGOING DLKS,
YOU KNOW THERE ARE WAYS OF DOING
THAT BECAUSE AGAIN, THESE ARE
ALL FACA COMMITTEES AND THEY ARE
ALLOWED TO CROSS TALK WITH 1
ANOTHER.
>> THANK YOU.
THAT'S HELPFUL.
>> RUSS?
>> LARRY THANKS AS WELL, BUT
THANK YOU FOR THE WOYEARS OF
INTERIM SERVICE, THERE'S NO JOB
WORSE THAN INTERIM LEADER
BECAUSE YOU HAVE ALL THE PROBLEM
ANDS NONE OF THE RESOURCES, SO
THANK YOU FOR AN OUTSTANDING
LEADERSHIP DURING THAT NTARRA
AND I DEBATED AS TO WHO GOT THE
WORST JOB, I THINK SHE MAY HAVE
GOTTEN THE WORST OF IT.
NWE ALSO DEBATED HOW LONG IT
WOULD BE AND NEITHER OF US
GUESSED 2 YEARS.
>> EXACTLY.
>> SO 2 QUESTIONS, ACTUALLY OR
QUESTION AND COMMENT, 1 IS THE
ROLE OF THE SMRB RELATIVE TO THE
PROPOSALS THAT ARE ON THE TABLE,
MY UNDERSTANDING IS THAT THE
REORGANIZATION WAS BAKE BAKED
INTO THE APPROPRIATION BILL
WITHOUT HEARINGS, JUST WAS
DEFACTOR, HERE IT IS AND THAT'S
SOMETHING 1 WOULD BE HEARING AND
MORE DELIBERATION AROUND THAT
EMPLOY MY UNDERSTAND SUGGEST
TAKEN--THEY IT'S UNLIKELY THERE
WILL BE AGREEMENT AMONG THE
DIFFERENT HOUSES, SENATOR, HOUSE
AND EXECUTIVE BRANCH AND IT'S
UNLIKELY THINGS WILL MOVE
FORWARD, AT LEAST THAT'S WHAT
I'VE HEARD.
WHERE GOING FORWARD CONGRESS HAS
SOME APPETITE FOR REORGANIZING
THE NIH, WHERE DID THE SMRB'S
INN PUT FIT IN THAT PROCESS
RELATIVE TO YOU KNOW TYPICAL
HOUSE HEARINGS FOR EXAMPLE?
>> WELL I THINK THE
DELIBERATIONS OF THE SMRB WILL
INFORM THE DISCUSSIONS.
ULTIMATELY IT'S THE POWER OF THE
CONGRESS TO REORGANIZE NIH TO
CREATE INSTITUTES, TO SOLVE
INSTITUTES.
IT WILL REQUIRE ACTION.
ONE OF THEM IS TO START UP THE
SMRB IMEAN, NOW THAT WE HAVE
SUCCESSFULLY DONE THIS, OUR HOPE
IS THAT THEY WILL ALLOW A
REGULAR PROCESS ORDER TO UNFOLD
AND TAKE INTO ASHES --ACCOUNT AD
HAVE THEIR DELIBERATIONS INFORM
WHAT THE SMRB IS TALKING ABOUT,
AND JUST AS AMONG FACA GROUPS,
YOU CAN IMAGINE TALK AMONG THE
GROUPS AND CONGRESS WHERE THEY
MAY HAVE THE CHAIR OF THE SMRB
TO COME AND PROVIDE A BRIEFING
AND SO FORTH.
BUT ALL OF THIS IS TO BE DECIDED
AND WE CERTAINLY ARE GOING TO DO
OUR PART IN TERMS OF THE SMRB TO
LOOK AT THESE PROBLEMS IN A
SYSTEMATIC AND SERIOUS WAY AND
HOPEFULLY COME UP WITH
RECOMMENDATIONS THAT YOU KNOW
RESONATE WITH THE LEGISLATURE,
YOU KNOW, [INDISCERNIBLE].
>> THANK YOU.
THE LAST QUESTION IS ABOUT
INTERAGENCY COOPERATION.
SO RECENTLY THERE WAS A WITHIN
OPHTHALMOLOGY A MAJOR PUSH FOR
STANDARDIZATION OF DATA AND A NW
DISCIPLINARY COMSTANDARD FOR
OPHTHALMIC IMAGING, NEI WAS
RIGHT IN THE MITSD WHICH WAS
GREAT.
FDA WAS RIGHT IN THE MITSD OF
IT, CMS DIDN'T COME TO THE TABLE
CAN ULTIMATELY IN MANY WAYS CMS
HAS SO MUCH CONTROL OF THE
CATAAND WHAT HAPPENS OUT IN THE
SCIENTIFIC WORLD AND WITH A CARE
PROPOSAL FOR ALIGNING QUALITY
MEASURES WITH RESEARCH INDEXES
THERE'S A MULTIPLIER EFFECT TO
COLLECT DATA AND REGISTRY AND
PAY PEOPLE ESSENTIALLY FOR
COLLECTING THAT DAT WHEN IT'S
ALIGNED QUALITY.
WHAT IS THE DIALOGUE LIKE
BETWEEN NIH AND CMMS IN TERMS OF
TRYING TO,A LIEN THOSE GOAL ANDS
GET EFFICIENCY OUT IN THE REAL
WORLD FOR DATA COLLECTION
EMPLOY.
>> YEAH, SO THE DIALOGUE IS
STRONGER THAN EVER.
I'VE BEEN HERE 24 YEARS, THE
FIRST 6 OR 7 YEARS WE COULDN'T
EVEN SPELL CMS BECAUSE IT WAS
INCREASED OVER HEECH YEAR AND
MONICA IS PARTICULARLY KEEN ON
ESTABLISHING A VERY STRONG
WORKING DIALOGUE, AND CMS
ADMINISTRATOR AND OUR STAFFS
WORK TOGETHER.
THERE'S QUITE A BIT OF THROW A
FOOTBALL LEVEL WORK THAT GOES
ON.
WE STILL HAVE MORE WORK TO DO
THOUGH, BECAUSE AS YOU POINT
OUT, THERE ARE CERTAIN THINGS
THAT REGARDLESS OF THE ADVANCES
WE MAKE ON THE RESEARCH SIDE
UNLESS WE ENGAGE CMS AND THEIR
APPARATUS, WE WON'T REALIZE THE
FULL VALUE AND POTENTIAL.
>> IN OPHTHALMOLOGY WE SET UP A
REEJ TREE TO SUBMIT FOR MIPs
FOR QUALITY APPLICATION NUMBERS,
DATA AND THAT'S RESULTED NOW IN
OVER 500 MILLION PATIENT VISITS
BEING COLLECT ED ON 70 MILLION
REGISTRANTS IN THE WORLD, WOULD
NOT HAVE HAPPENED IF CMS HAD NOT
INCENTIVIZED THAT DATA
COLLECTION THROUGH THE QUALITY
PROGRAM AND THE QUALITY MEASURES
ALIGN WITH A LOT OF RESEARCH
INTERESTS THAT HAVE BEEN ABOUT
400 PAPERS COME OUT OF THIS SO
FAR AT VERY LITTLE COST TO NIH
SO THERE'S A REAL OPPORTUNITY
FOR SYNERGY.
>> ABSOLUTELY.
AND IN FACT JUST THIS MORNING
MIKE CHANG GAVE A PRESENTATION
TO NEI AND IN THE NUMBER OF WAYS
THEY ARE LEADING THIS THING AND
THAT'S GREAT.
>> ECHOING THANKS FOR SERVICE
AND GREAT TO SEE YOU ARE HERE.
SO WE'RE REALLY ON THE SMRB
TODAY.
SO I WANT TO ASK HOW YOU'RE
THINK BEING IT IN TERPS OF TEMON
TRAITING IT'S UNIQUE VALUE OR
SPECIAL INPUT SO IT'S SOMETHING
THAT'S NOT PING PONGY AND
TARGETING AGAIN TO THE EXTENT
THAT NIH HAS VALUE TO GET THAT
STANDING ADVISOR COMMITTEE UNDER
FAKRRKA, HOW ARE YOU THINKING
ABOUT TEEING UP ISSUE ANDS
MAKING IT SOMETHING THAT'S
INSTITUTIONALIZED RATHER THAN
SOMETHING THAT MAY GO AWAD
DEPENDING ON THE WINS NFAIR
POINT.
I THINK YOU DEMON TRAIT VALUE BY
BEING SERIOUS ABOUT THIS AND
PURPOSEFUL.
IF WE TAKE ON SUBSTANTIVE
ISSUES, IF WE HAVE REAL DEBATE
AND REAL ANALYSIS OF PROS, CONS,
WAYS FORWARD, PEOPLE WILL
EMBRACE IT AND PEOPLE WILL WANT
IT TO CONTINUE.
THAT'S NOT TO SAY IN ITS FORMER
ITERATION THE SMRB DIDN'T DO
THAT BUT OVERTIME, THAT THEN
DIRECTOR COLLINS HAD IN HIS MIND
WERE ACCOMPLISHED WE BECAME AT A
LOSS FOR WHAT THE NEXT THING WAS
AND THEN WE SORT OF DEFAULTED TO
THE ACD AND YOU KNOW, HERE WE
HAVE MUSEUM --NOW FACED WITH A
WHOLE ROUND OF THINGS TO THINK
ABOUT.
AND HOPEFULLY IF WE'RE SERIOUS,
IF WE'RE PURPOSEFUL, IF WE ADD
VALUE THEN IT WILL BE SUSTAINED
AND HOPEFULLY THAT IS WHAT WILL
HAPPEN.
IT'S CERTAINLY THE INTENT GOING
IN.
>> RAFAEL AND THEN WE WILL GO TO
MONICA AND THEN [INDISCERNIBLE],
YOU WILL HAVE THE LAST WORD.
>> THANKS FOR WRITING THIS, AND
BASIC SCIENCE, I AM SURE YOU
ARGUE THAT MANY OR MOST OF THE
ADVANCES IN MEDICINE AND
CLINICAL CARE ARE ONLY, HAVE
ONLY BEEN PLAUSIBLE THANKS TO
BASIC RESEARCH BUT AND I AGREE A
HUNDRED% WITH THAT.
IN THE SLIDE WHERE YOU HAVE 2 OF
THE VISION, THE FIRST IS CONNECT
RESEARCH TO PRIMARY CARE TO
OPTIMIZE OUTCOMES FOR PATIENTS.
SO I SEE THAT A LITTLE BIT
CONTRADICTORY, I DON'T KNOW IF
YOU WANT TO EXPAND?
>> WELL, I THINK IT'S NOT EITHER
OR.
I THINK IT ISADDATIVE, I BEING
THE PRIMARY CARE INITIATIVES
HAVE BEEN UNDERLOOKED OVER THE
YEARS.
I THINK BASIC SCIENCE HAS HAD A
SUSTAINED SUPPORT OVER THE YEARS
BUT BECAUSE SO MUCH OF THE
DISCUSSION HAS CENTERED AROUND
MORE CLINICALLY ORIENTED
EFFORTS, THERE IS A CERTAIN
NERVOUSNESS THAT OCCURS, AND WE
HAVE TO REMIND BOTH, YOU KNOW
BIOMEDICAL RESEARCH WORKFORCE
THAT YES, BASIC SCIENCE IS STILL
REALLY IMPORTANT, WE HAVE TO
REMIND LEGISLATORS THAT YES,
BASIC SCIENCE IS TILL IMPORTANT.
SO IT'S NOT EITHER OR.
IT'S GOT TO BE BOTH.
ALL OF YOU KNOW THAT WHEN WE
DRAW THIS MODEL THAT WE SHARE
WITH OUR STUDENTS, BASIC
CONSCIENCE BEGETS TRANSLATIONAL
SCIENCE, BEGETS CLINICAL
RESEARCH, WE ALL KNOW THAT IT'S
NOT LINEAR, IT'S A CIRCLE, IT'S
A VIRTUAL CIRCLE BECAUSE MOST
IDEAS COME FROM AN ASTUTE
CLINICIAN EXAMINING THEIR
PATIENT AND SO THAT CYCLE WILL
CONTINUE AS A CIRCLE NOT AS A
LINEAR THING.
O I--YOU KNOW THANKS FOR
BRINGING IT UP BECAUSE NO 1
SHOULD INTERPRET, OH NO NOW
THEY'RE CHANGING THEIR MIND
AGAIN, IT'S BOTH.
>> I'M NOT IN THE CIRCLE, I
AGREE WITH THE CIRCLE, BUT
SOMETIMES THE BASIC SCIENCE
COMES WITHOUT THE CIRCLE NYEAH,
YEAH, OR SURE.
NAND IT'S STILL SUPPORTED BY--
>> IT HAS TO BE, IT HAS TO BE
EMPLOY YOU KNOW LOOKING AT
BACTERIA IN YOGURT LIKE THE
CRSPR CAS, BUT WHY ARE WE
FUNDING RESEARCHING BACTERIAER
WHY IN YOGURT BECAUSE--AND
THAT'S THE DRIVEN CURIOSITY THAT
WE DO AND YOU SLEEP APNEA AND
OBESITYY THESE SEQUENCES OF
DNETWORKA AND BACTERIA, YOU GO
WHAT THE HECK IS ALL THIS ABOUT
AND OF THE REST OF COURSE IS ALL
HISTORY, SO NO, IT'S GOT TO BE
ALL OF THE ABOVE AND I THINK
THIS AGENCY IS ROBUST ENOUGH AND
I THINK THAT OUR BIOMEDICAL
RESEARCH WORKFORCE AND STRONG
ENOUGH AND REALLY, THE BREDTH IS
THERE TO TAKE CARE OF ALL OF US.
>> MONICA?
>> THANK YOU FOR THAT, I JUST
WANT TO ASK FOR THE PROPOSED
INSTITUTE RESTRUCTURING THAT
CONGRESS PUT THROUGH.
>> IS THERE ANYONE YOU WANT TO
GET RID OF.
[LAUGHTER]
>> NO I WANT THEM ALL AND
ACTUALLY WHAT WAS KIND OF
INTERESTING IS THAT EVEN IF THEY
DIVIDE LIKE THAT, THEN I THINK
THEY WILL BE REDUCED--STATEMENTS
WOULD NOT BE REDUCED FUNDING.
I THINK THERE WOULD BE BECAUSE
IF YOU COMBINE 2 INSTITUTES AND
THE SAME AMOUNT OF FUNDING FOR
SOME OF THEM THERE WILL BE AND
THE AT THE SAME TIME READ LIKE
THE CONGRESS READ LIKE IT WASN'T
GOING TO REDUCE FUNDING BUT I
THINK IT WOULD.
I GUESS MOY QUESTION IS, WHAT
ADVOCACY ROLE DOES THIS COUNCIL
HAVE TO PLAY IN ANY OF THE NEW
STRUCTURING ROLE AT ALL TO
COMMENT ON--
>> WELL ALL OF THESE PROCESSES
WILL HAVE THE OPPORTUNITY FOR
TAKE HOLDERS TO MAKE COMMENT.
THIS 1 PARTICULAR PROPOSAL, I
KNOW HAS GOTTEN A LOT OF
ATTENTION BUT IT IS 1 OF MANY,
MANY PROPOSALS AND EACH 1 OF
THEM HAVE TO BE LOOKED AT, NOT
ONLY INDIVIDUALLY BUT AS A WHOLE
AS A CORPUS.
AND SO WE AT THE VERY, VERY
BEGINNING OF WHAT WE THINK WILL
BE A PROCESS, THAT WILL INVOLVE
STAKEHOLDERS, THAT WILL INVOLVE
THE AGENCY, THAT WILL INVOLVE,
YOU KNOW CONGRESS, THE
ADMINISTRATION, I DON'T UPON
THINK THERE'S ANY IMMEDIATE
DECISION THAT 1 COULD ANTICIPATE
BUT I DO THINK THAT SOMETIMES
YOU LAY OUT A VISION IF FOR NO
OTHER PURPOSE TO CATALYZE, YOU
KNOW HONEST DEBATE AND DIALOGUE
ABOUT SOMETHING.
AND IT'S WORKING, WE'RE TALKING
ABOUT IT RIGHT.
SO, AND AGAIN, I THINK THAT
SCIENTIFIC REVIEW MATTERS, WE
WILL DO OUR BEST WITHIN THAT
ORGANIZATION BUT I'M SURE THAT
YOU KNOW AS WE'VE MENTIONED YOU
KNOW CONGRESS WILL HAVE HEARINGS
AND OTHER SORTS OF FACT FINDING
EFFORTS AND SO FORTH AND THEN
WITHIN YOUR PROFESSIONAL
ORGANIZATIONS, WITHIN YOUR
ACADEMIC ORGANIZATIONS, I'M SURE
THERE'S GOING TO BE A GREAT DEAL
OF GOOD DEBATE AND CONVERSATION
ABOUT THAT PROPOSAL AND ALL THE
OTHERS QUITE FRANKLY AND WHAT
EMERGES I HOPE IS A MORE
EFFICIENT, BETTER NIH SO THAT WE
ARE ABLE TO SUPPORT RESEARCH AND
TRAINING IN THE BEST POSSIBLE
WAY IN THE MOST EFFICIENT WAY SO
THAT WE HAVE ENOUGH MONEY TO
SUPPORT ALL THE AMAZING
INVESTIGATORS WE HAVE OUT THERE,
WE ARE RIGHT NOW, WE FALL SHORT
BECAUSE WE CAN'T FUND EVERYTHING
THAT IS MERITORIOUS.
AND SO WE'RE WILLING TO WORK
WITH CONGRESS, WE'RE WILLING TO
WORK WITH YOUR ADMINITRATION,
WE'RE WILLING TO WORK WITH ALL
YOUR DIFFERENT ORGANIZATIONS
OTHERS EITHER YOUR HOME
INSTITUTIONS OR VARIOUS
SOCIETIES THAT YOU ARE ALL PART
OF AND REPRESENT AND SO FORTH
AND MAYBE WE NEED TO BE EXPLICIT
ABOUT WHEN ALL THOSE PARTNERS
ARE, THAT'S A VERY IMPORTANT
POINT YOU RAISED.
BUT YEAH, WE ARE JUST AT THE
BEGINNING.
BUT IF THERE IS 1 INSTITUTE YOU
COULD STILL--
>> [LAUGHTER]
>> YOU WANT TO CLOSE US OUT?
>> YEAH, AGAIN THANK YOU SO MUCH
FOR THIS CONVERSATION EMPLOY
IT'S VERY MEANINGFUL AND I THINK
IT'S DEFINITELY GOING TO BE A
GREAT WAY FOR NIH TO PROCEED.
I THINK YOU KIND OF ANSWER MY
QUESTION A LITTLE BIT ON WHO'S
GOING TO BE ON, IS IT ALL
INTERNAL OR WILL THEY BE A TEAM?
>> I APOLOGIZEY WEREN'T SURE WE
WOULD ACTUALLY ROLL OUT THE
ANNOUNCEMENT FOR THAT, IT WAS
THIS MORNING IF I HAD KNOWN THAT
I WOULD HAVE HAD THE SLIDE FOR
YOU.
THERE ARE BOTH INSTITUTE AND
CENTER DIRECTORS AS WELL AS
MEMBERS FROM THE OUTSIDE.
AND WE WILL GET THAT INFORMATION
AFTERWARDS, BUT THAT'S ALL
PUBLIC INFORMATION NYOU ALL DID
RECEIVE THE E-MAIL THIS MORNING,
I THINK IT CAME OROUND 10:30.
NYEAH, JUST GOT IT.
>> I WOULD HOPE THAT YOU INCLUDE
IN THAT BOARD, BECAUSE SITTING
ON THIS COUNCIL NOW FOR 6 YEARS
AND 6 YEARS IN ANOTHER COUNCIL,
18 YEARS OF EXPERIENCE, WE DON'T
TALK THE SAME LANGUAGE.
WE DON'T THINK THE SAME AND I
THINK AND I'M SAYING THAT TO SAY
IT'S REAL IMPORTANT TO
INCORPORATE THE REAL WORLD AND
THOSE WHO ARE IN THE BUSINESS
SIDE BECAUSE NIH IS A BUSINESS.
BUT I DON'T GET THE SENSE IT HAS
THAT KIND OF APPROACH.
THE CULT SURNONAPOPTOTIC THE
THAT, THE CULT SURRESEARCH, YOU
NEED TO BE FOCUSED ON RESEARCH,
YOU DO AN EXCELLENT YOB CORPS
WITH IT, IT'S THE BUSINESS SIDE
THAT SEEMS TO NOT NECESSARILY BE
AS STRONG AND I'M JUST SAYING,
JUST AS AN OUTSIDER WATCHING FOR
18 YEARS, I CAN TELL YOU THE
ARGUE AMS I'VE HAD WITH
DIRECTORS ABOUT WHY ARE YOU
BUDGETING ON THIS, WHY AREN'T
YOU FOCUSING ON THIS AND I
DIDN'T ALWAYS UNDERSTAND THE
CULTURE BUT--IT TAIBS ME A LONG
TIME.
I UNDERSTAND THE CULTURE.
IT'S A VERY STRONG CULTURE, IT'S
A VERY PRODUCTIVE CULTURE BUT
NOW YOU'RE TALKING ABOUT A
POTENTIAL CULTURE CHANGE AND
THAT CAN BE VERY MASSIVE, IT CAN
BE DONE VERY WELL OR VERY
DESTRUCTIVE AND I JUST WANT TO
MAKE SURE THAT YOU NOTICE THAT
MAKE SURE HAVE YOU THE RIGHT
TYPE OF THING AROUND THE BOARD
BECAUSE, LAST PART AND I WILL
CLOSE US OUT, THIS IS ABOUT
APPLIED SCIENCE, NEEDING TO HAVE
BASIC SCIENCE, THAT NEEDS TO BE
A CAMPAIGN EMPLOY IF YOU GO BACK
TO COVID, HOW NIH, FAUCI WAS
BEING ATTACKED BECAUSE PEOPLE
DID NOT UNDERSTAND AND I CAN
TELL YOU SO MANY TYPES PEOPLE
CAME TO ME, SAYING WHAT DO YOU
MEAN IN THEY DIDN'T UNDERSTAND
THAT SCIENCE OF WAS A ITERATIVE
PROCESS, THEY THOUGHT IT WAS
DONE SO HAVE YOU A LOT OF
CAMPAIGNING TO DO AND I'M SAYING
IT THAT WAY SO I HOPE YOU CAN
BUDGET SO THAT YOU ARE LOOKINGA
THE THIS FROM A COMAWNICATIONS
PERSPECTIVE BECAUSE PEOPLE NEED
TO THINK DIFFERENTLY ABOUT BASIC
SCIENCE BECAUSE THEY DON'T RIGHT
NOW.
NTHANK YOU FOR BOTH OF THOSE
COMMENTS.
I THINK WHEN YOU HAVE AN
OPPORTUNITY TO HEAR A LIST OF
THE EXTERNAL PEOPLE, ON THE
SMRB, I HOPE YOU WILL AGREEN
CELLS WE HAVE FOLK WHO IS HAVE
THE SAVVY THAT YOU ARE REFERRING
TO, PRECEDENCY, FORMER
PRESIDENTS OF INSTITUTIONS,
DEANS AND SO FORTH.
BUT I THANK YOU FOR THE
COMMENTS.
OKAY.
THANKS FOR HAVING ME.
NTHANK YOU FOR THE EXTRA TIME.
IT WAS SUCH A RICH DISCUSSION
AND I'VE GOTTEN A FEW COMMENTS
IN THE CHA THE AND OTHER PLACES
THAT THE GROUP HAS REALLY
ENJOYED THIS.
SO THANK YOU, LARRY. .
[ APPLAUSE ]
OKAY, WELL WE ARE NO GOING TO
TRANSITION TO THE CLOSED SESSION
OF TODAY'S MEETING SO ONLY
COUNCIL MEMBERS AND NIH STAFF
WILL PARTICIPATE IN THE CLOSE
SESSION
WELCOME EVERYONE
BACK.
WE'RE GOING TO BE RESUMING OPEN
SESSION HERE.
SO THE NEXT PRESENTATION THAT WE
HAVE IN THIS OPEN SESSION IF YOU
COULDN'T TELL BY THE SLIDES
ALREADY IS GOING TO BE FROM THE
ALL OF US RESEARCH PROGRAM CEO
DR. JOSH DENNY AND HE WILL
PRESENT ON KEY UPDATES INCLUDING
1 ON SOME OF THE NEW SHARES THEY
HAVE FOR NEW DATA RELEASE COMING
DOWN THE PIKE SHORTLY.
SO JOSH, THE FLOOR IS YOURS.
>> WONDERFUL THANK YOU.
IT'S A PLEASURE TO BE HERE AGAIN
AND GIVE YOU AN UPDATE FOR WHERE
WE ARE WITH THE ALL OF US
RESEARCH PROGRAM.
I LOOK FORWARD TO THE
PRESENTATIONS AND THE FOLLOW UP
AFTER THIS WHICH WILL GET A
STRATEGIC VISIONING AND REVIEW
OF THIS RECOMMEND AS WELL AND I
AM TRYING TO FIGURE OUT HOW WE
MOVE SLIDES.
DO I NEED TO SAY NEXT?
OKAY, NEXT.
SO AS I REMINDER OUR MISSION IS
CONSIDERING HEALTH AND MEDICAL
BREAKTHROUGHS UTILIZING CARE,
PRERENGZ AND TREATMENT FOR ALL
OF US.
WE THINK OF THESE IN THE 3
CIRCLES OF FUNCTION, THE FIRST
IS REALLY NURTURING DEEP
PARTNERSHIPS WITH AT LEAST A
MILLION PARTICIPANTS AS IT'S A
LONGITUDINAL PROGRAM, WE WANT
THEM TO BE ACTIVE PARTICIPANTS
AND PARTNER WITH US AND THEN
GETTING THE RESEARCH DATA
COLLECTED AND SHARED WITH US
INTO AS MANY RESEARCHERS HANDS
SAFELY AND SECURELY THAT
MAINTAINS TRUST AND TRANSPARENCY
WITH OUR PARTICIPANTS AND THEN
THINK OF THIS AS AN ECOSYSTEM,
RESEARCHERS AS PART OF THIS AS
WELL AND THEN FUNDERS THAT WILL
MAKE ALL OF US INDISPENSABLE
PART OF HELT RESEARCH, NEXT
SLIDE.
THIS GIVES YOU A BRIEF SENSE OF
THE TIMELINE, IT WAS ANNOUNCED
AT 2015 STATE OF THE UNION, THEN
AS PRECISION MEDICINE
INITIATIVE.
IT WAS SOON AFTER LAUNCHED
RENAMED AS ALL OF US RESEARCH
PROGRAM.
WE OPEN DOORS TO OUR FIRST BETA
PARTICIPANT ANDS ALPHA PER TIS
PANTS IN 17 BUT THEN WE
NATIONALLY LAUNCHED IN 2018 AND
YOU CAN SEE, WE STARTED TO TRY
TO GET DATA OUT THERE QUICKLY.
2019 WE OPENED, TOOK OUR FIRST
DATA RELEASES AND PUT THEM INTO
A PUBLIC DATA BROWSER AND IMIF
YOU AGGREGATE COUNTS TO GIVE
RESEARCHERS THE KIND OF SENSE OF
THE DATA COMING SOON AND THEN
AFTER COVID HIT WE RELEASED OUR
WORKER BENCH WHERE RESEARCHERS
COULD TART ON DID DATA ANALYSIS
JUST 2 YEARS AFTER WE OPENED OUR
DOORS TO SEQUENCE.
KEY STARTED IN 2021 AND DID
PARTNERSHIP LOOKING AT THE
SPREAD OF COVID IN OUR
PARTICIPANTS WHO ARE RECRUITED
JANUARY THROUGH MARCH OF 2020 OF
THIS YEAR AND DEMON TRAITED
EXAMPLES OF COMMUNITY SPREAD OF
BROADER THAN WE THOUGHT SO AT
THE TIME WAS THERE.
OUR FIRST GENOMIC DATA SET WAS
IN 2022 AROUND A HUNDRED
THOUSAND BENOAMS, WE HIT OUR
500,000 PARTICIPANT NARC IN 2022
AS WELL.
2023 WE STARTED A REALLY LARGE
ANCILLARY STUDY, WE'LL TALK MORE
CALLED PRECISION HEALTH OUT OF
THE COMMON FUND.
HERE IS A PARTNERSHIP WITH 18
INSTITUTE CENTERS AND OFFICES
AND THEN IN 2024, WHERE WE ARE
NOW, WE HAVE--AT THE END OF
2023, WE ENROLLED OUR FIRST
CHILD WITH A FOCUS ON PEDEIATIC
ARES IN 2023, WE HAVE AN
END-TO-END ONGOING ENROLLMENT
WITH THE KIDS AT THIS POINT,
TEST AT A SMALLER SCALE THAN WE
ORIGINALLY PLANNED, AND WE WILL
TALK ABOUT BUDGET FACERS THAT
PLAYED INTO THIS TALK AND WE NOW
HAVE RETURNED TO INDIVIDUALS, A
TOTAL OF 360,000 PLUS DNA
REPORTS OF DIFFERENT TYPES.
WE HAVE 830,000 PARTICIPANTS,
MORE THAN 12,000 RESEARCHERS.
OF NOTE, WE ACTUALLY SET OUR
GOAL FOR THE END OF 2026 OF
HAVING 10,000 RESEARCHERS SO YOU
CAN SEE WE HIT THAT BENCHMARK A
COUPLE YEARS EARLY.
NEXT SLIDE.
KEEP IT WITH THE NEXT ARROW,
THESE ARE CURRENT COUNTS.
PEOPLE PARTICIPATE ACROSS THE
COUNTRY OF ALL 50 STATES IN ALL
U.S. TERRITORIES REPRESENTED.
THAT'S INCLUDING PEOPLE WHO
DONATE BIOSPECIMENS THAT'S 838
IN TOTAL, THAT'S EVERYONE
DONATING IN DIFFERENT WAYS, NOT
EVERYONE DONATES BIORECORDS, SO
THAT'S THE DIFFERENCE IN THE 2
NUMBERS.
IT'S US IMETTING TO THOSE
ELECTRONIC HEALTH RECORDS BUT
WE'VE MANAGED TO PULL TOGETHER
ACROSS MANY DIFFERENT
INSTITUTIONS AND EHR VENDORS
MORE THAN 450,000 ELECTRONIC
HELT RECORDS AND AOVER 580
BIOSAMPLES.
YOU CAN SEE THE DIFFERENCE HERE,
BUT IT'S NOT JUST ABOUT RACE AND
ETHNICITY, IT'S ABOUT A NUMBER
OF OTHER MEASURES.
AND THIS IS AN EVOLVING MEASURE,
FOR INSTANCE WE DID INITIALLY
HAVE DISABILITY IN OUR FIRST
SURVEY QUESTIONS SO WE UPDATED
SURVEYS, AND WE HAVE ABOUT 20%
WHO IDENTIFY AS HAVING A
DISABILITY.
INCOME, SEXUAL GENDER MINORS, WE
JUST LAUNCHED A NEW HEALTHCARE
ORGANIZATION TO HELP RECRUIT IN
RURAL INSTANCES AS WELL.
NEXT SLIDE.
NEXT SLIDE, NEXT SLIDE, PLEASE.
SO REGARDLESS OF HOW KNOW ROLL,
WE COLLECT SIMILAR INFORMATION,
WE COLLECT VIDEOS, ELECTRONIC
HEALTH RECORDS AND SENT THERE, A
SERIES OF SURVEYS BECAUSE WE
WORK ON GETTING HEALTH
ELECTRONIC RECORDS, WE WORK ON
WHAT KINDS OF INFORMATION, LIKE
MENTAL HEALTH, WELL BEING,
LIFESTYLE BEHAVIOR KINDS OF
QUESTIONS INSTEAD OF WHAT
DISEASES YOU HAVE AND THE DETAIL
OF THOSE.
WE ASK THOSE QUESTIONS, TOO BUT
WE FOCUS ON OTHER MEASURES.
PHYSICAL SAMPLES, BIOCOLLECTION,
AND WE ALLOW PEOPLE TO BRING IN
THEIR OWN LINKEDin, FIT BIT,
OR APPLE HEALTH DEVICES BUT
WE'VE ALSO BEEN GIVING OW 10S OF
THOUSANDS OF HEALTH DEVICES TO
HELP CLOSE THAT GAP IN TERMS OF
THE UNDERREPRESENTED IN THE
BIOMEDICAL RESEARCH CATEGORY.
WE WANT TO RETURN PARTICIPANTS
AS A CORE VALUE AND PART OF FORM
THAGOREAN PARTNERSHIP AND WHAT
WE HEARD FROM PARTICIPANTS IS
RETURN OF GENETIC INFORMATION
WAS WHAT THEY WERE LOOKING FOR
MOST IN THAT, BUT THEN THERE'S
OTHER STUFF LIKE WHAT'S THE
SURVEY DATA LOOK LIKE COMPARED
TO OTHERS IF YOU'VE GIVEN US
LINKED IN ELECTRONIC HEALTH
RECORD DATA WE CAN SHOW YOU THAT
BACK TO YOU AND AGGREGATE SOME
OF THAT TO YOU IF YOU GET IN
MULTIPLE SITES AND BASIC
MEASUREMENTS WE'VE COLLECTED.
NEXT SLIDE.
THIS GETS A LITTLE BIT DEEPER
INTO THE KINDS OF GENOMIC HEALTH
RELATED RESULTS THAT WE RETURN.
WE ALLOW PEOPLE TO ACCESS
ANCESTRY AND NONHEALTH RELATED
TREATMENT INFORMATION AS WELL.
BUT 1 THING WE'RE REALLY
EXSIGHED ABOUT THAT'S BEEN
LAUNCHED FOR ABOUT 20 MONTHS NOW
AT THIS POINT IS A RETURN OF
CLINICAL HEALTH RELATED RESULTS
FROM GENETICS SO THE FIRST PART
OF THAT IS HER EDITORY DEC RISK,
WE LOOK AT 59 GENES, ACM 59 LIST
AND WE'VE HAD OVER 120,000
PEOPLE THAT RECEIVE THOSE KINDS
OF RESULTS AT THIS POINT.
THESE ARE ALL ACTIONABLE, WE
HAVE 3300 FOLKS THAT HAVE
RECEIVED YOU KNOW ACTIONABLE
RESULTS FOR WHICH THEY COULD DO
SOMETHING DIFFERENT THAT COULD
HAVE A VERY REAL IMPACT IN THEIR
LIVES.
UNDERSTANDING THE REST FOR HER
EDITORY RISKS FOR BREAST AND
OVARIAN AND COLORECTAL CANCER
AND OTHERS LIKE CARDIOMYOPATHYS,
AND YOU KNOW UNDERSTANDING THE
RISK FOR THESE WOULD BE SUDDEN
CARDIAC DEATH.
SO THESE ARE REAL THINGS.
WE'VE SEEN CASCADE TESTING IN
FAMILIES AFTER A PARTICIPANT
FOUND OUT RESULTS.
IN ADDITION WE RETURNED PHARMA
CO GENETIC INFORMATION, THE
REPORT MORPH THAN 120,000 PEOPLE
HAVE RECEIVED THESE SO FAR AND
90% OF THEM HAVE ACTIONABLE
RESULS IF THEY ARE EXPOSED TO
MEDICATION.
WE KNOW 20% OF OUR POPULATION IS
EXPOSED TO A MEDICATION FOR
WHICH THEY WOULD HAVE AN
ACTIONABLE VARIANT.
SO 1 IN 5 OUR PARTICIPANTS HAVE
POTENTIALLY USEABLE INFORMATION
THAT GUIDE THIS IS FROM THE NEXT
RESULTS.
NEXT SLIDE.
WE HAVE MULTIPLE TIERS WE
RELEASE INDEED 2019 WAS OUR PUB
LIAISON TIER WHERE YOU AGGREGATE
COUNTS, VERY IMPEDIMENTSITTED
ABILITY TO CROSS TAB THE DATA WE
LOOK AT BUT IT WILL GET YOU A
SENSE OF WHAT'S IN THE DATA SET
AND WHETHER YOU'RE AT ADEQUATE
POWER TO DO A RESEARCH STUDY AND
THROUGH THE INDIVIDUAL WORK
BENCH, YOU GET INDIVIDUAL LOW
LEVEL DATA TO DO THOSE STUDIES
AND THAT HAS REGISTERED TEAR,
WHICH GETS YOU A LITTLE BIT MORE
DEIDENTIFIED INFORMATION, DOES
NOT HAVE GENOMICS IN AND THEN A
HIGHER BAR TO GET INTO A
CONTROLLER TIER AND THEN OPEN TO
A NUMBER OF RESEARCHERS, THAT'S
WHERE OUR GENOMICS ARE, AND
CERTAIN INFORMATION ARE, AND WE
HAVE REAL DATES IN THAT TEAR AS
WELL, NEXT SLIDE, AND THAT LETS
YOU DO THINGS THAT ARE
SYNCHRONIZED WITH OUTBREAKS AND
THINGS LIKE THAT AS L. THIS
GIVES YOU A SENSE OF THE DATA
SET AND 2 MILLION SURVEYS
COMPLETED BY PARTICIPANTS.
ALL OF THEM HAVE A CORE SET OF
SURVEYS, ELECTRONIC HEALTH
RECORDS ARE GENETIC DATA IS
CURRENTLY ABOUT A MILLION WHOLE
GENOME SEQUENCES, IT'S
AVAILABLE, WE OBSERVE VERYIATION
IN SEVERAL LOCATIONS, ABOUT
2/3RDS OF THAT WAS NOT IN
NATIONAL LIBRARY OF MEDICINE AN,
IF YOU'RE INTERESTED IN THAT, WE
SEE A LOT OF NEW VARIATION
THERE, 275 MILLION SNPs, WERE
NOT IN DBSNP.
SO A LOT OF NEW VARIATION WE'RE
PICKING UP AND OF COURSE, YOU
KNOW A KEY PART OF THIS IS IT'S
LINKED TO PHENOTYPIC
INFORMATION.
IT'S LINKED TO SURVEYS, CAN YOU
UNTANGLE WHAT THESE THINGS MEAN.
WE HAVE A NUMBER OF
BIOSPECIMENNINGS OUT THERE,
15,000 FIT BITSAs WELL, NEXT
SLIDE.
SO OUR RESEARCH COMMUNITY
ALREADY MENTIONED WE HIT OUR
2026 YEAR GOLD A COUPLE YEARS
EARLY.
THOSE 12,500ISH RESEARCHERS ARE
ACROSS OVER 800 INSTITUTIONS, WE
HAVE DELIBERATELY FOCUSED ON
TRYING TO MAKE ONRAMPS FOR THE
NONTYPICAL R-1 TYPES OF
INSTITUTIONS WITH HBCUs,
HISPANIC INSTITUTIONS AND TRYING
TO MAKE THEM AVAILABLE TO TRIBE
AT COMMUNITIESA LOS ANGELES, IN
ADVANCE OF HAVING DAT ON THE
RESOURCE, TRYING TO MAKE THESE
CONNECTIONS OUT THERE AND IN
ADDITION TO THE TYPE OF
INSTITUTION, WE ARE ALSO
CREATING RESEARCH AMBASSADORS,
ONRAMPS AND MAKING FREQUENT
KINDS OF SEMINARS, WORKSHOPS,
TRAINING FOR LESS ADVANTAGED AND
EARLY STAGE RESEARCHERS.
WE LAUNCHED TO OPEN THE DOORS TO
INTERNATIONAL ACCESS END OF LAST
YEAR, WE HAVE 6 CONTINENTS AND
135 INSTITUTIONS REPRESENTED NOW
AND ANT ARCTICCA IS MISSING AND
PROBABLY WILL BE MISSING FOR
SOMETIME, I IMAGINE AND WHEN WE
OPEN TO COMMERCIAL ACCESS IN
JULY.
NEXT SLIDE.
WE ARE SEEING PAPERS FROM THE
PICK UP AS WOULD BE EXPECTED
OVER TIME, IT TAKES AN ACCRUAL
OF TIME TO GET SOME OF THOSE
PUBLISHED AND YOU CAN SEE AN
EXAMPLE, SOME OF THOSE ON THE
LEFT.
ONE I WILL JUST HIGHLIGHT HERE
IS THAT 1 ON THE BOTTOM WHICH IS
LOOKING AT 10 POLYGENIC RISK
SCORE FOR CHRONIC DISEASE, IT'S
REALLY DRIIVE BY A NETWORK OUT
OF NHGRI AND GETS A SENSE OF HOW
WE CAN ENABLE RESEARCH ACROSS
DIFFERENT ICs, SO IN THIS
PAPER, THEY TOOK THESE POLYGENIC
RISK ON SCORES IN A LARGELY
ANCESTRY POPULATION, USED OUR
DATA SET TO AJUST THOSE EFFECT
SIZES IN A WAY THAT WOULD FEEL
COMFORTABLE AMRIING THEM TO
DIVERSE POPULATIONS AND THEN ARE
DEPLOYING THOSE IN A PROTEBTIVE
SWAY WITH THIS NHGRI BASE
NETWORK, EMERGE NETWORK, SO IT'S
A WAY WE'RE ENABLING CLINICAL
INTERVENTION STUDY USING
BEGOMMIC DATA TO HELP GUIDE
CARE.
NEXT SLIDE.
WE CONTINUALLY TRY TO MAKE NEW
ENVIRONMENTS, PEOPLE COME IN AND
USE OUR RESOURCE IN OUR DATA
SET, THEY DON'T DOWNLOAD THE
DATA.
THAT HELPS US INCREASE
TRANSPARENCY, ALLOWS US TO
AUDIT, PROVIDE GREATER
PROTECTIONS AND ENGENDERS MORE
TRUST WITH OUR PARTAISS--SYNTH
PANT POPULATION.
WE HAVE A NUMBER OF WEB BASED
TOOLS WITHIN THE ENVIRONMENT TO
LET YOU POINT AND CLICK, AND
PULL OUT A POPULATION OF
INDIVIDUALS, BUILD A DATA SET
AND TO DO RESEARCH, ORIGINALLY
YOU HAD THE NOTEBOOKS AND WE
ADDED R-ITUDEIO AND SAS IN THAT
MIX AND ANOTHER THING THAT WILL
HELP ACCELERATE THE ABILITY FOR
RESEARCHERS TO GENERATE AND
FACILITATE SCIENCE IS THE
SHAREABILITY OF THESE WORK
SPACES IN A WAY YOU CAN SITE AN
INTERNAL PAPER THAT YOU CAN PUT
THAT WORK SPACE OUT THERE,
PUTTING URL TO IT, SOMEONE ELSE
CAN COME TO IT AND USE THAT,
MAYBE YOU CREATED DATA SET,
MAYBE YOU HAVE A METHOD,
PIPELINE, IT'S FOR
REPRODUCIBILITY BUT IT'S ALSO
FOR TOOL CREATION, NOW
RESEARCHERS AS THEY CREATE THIS
WORK IN THE 12,000 OR SO WORK
SPACES THAT HAVE BEEN CREATED
THEY CAN TAKE THOSE INSURE THEM
WITH OTHER WAYS WITH OTHER
RESEARCHERS.
NEXT SLIDE.
AND I'M JUST GOING TO WALK
THROUGH THE NEW DATA WE HAVE ON
HERE.
ONE OF THE PROJECTS WE HEARD
ABOUT AND WE'VE SEEN IN OTHER
DATA SETS IS DOING WHAT WE CALL
AN ALL IR GENOME WIDE
ASSOCIATION STUDY.
SO WE CALCULATED THAT FOR US, IT
WAS ABOUT 80 YEARS WORTH OF
COMPUTE DATA THAT WAS
ACCOMPLISHED OVER A WEEKEND WITH
SCALES UP THE NUMBER OF
RESOURCES THERE AND THIS LOOKS
AT THE 250,000 WHOLE GENOMES WE
HAVE TESTED ACROSS WITHIN
DIFFERENT PRIMARY ANCESTRY
GROUPS AS WELL AS OVERALL, AS A
WAY TO AGGREGATE ACROSS MANY
DIFFERENT PHENOTYPES HERE AS YOU
CAN SEE.
THIS IS AVAILABLE WITHIN THE
RESOURCE NOW AS A DATABASE THAT
YOU CAN QUERY AND LOOK FOR IF
YOU'RE AN APPROVED RESEARCHER
AND WE'RE WORKING ON A WEB BASED
INTERFACE TO EXPLORE THIS WHICH
WE HOPE TO LAUNCH IN THE NEXT
COUPLE MONTHS.
NEXT SLIDE.
THIS IS AN EXAMPLE OF 1 OF THE
PAPERS THAT CAME OUT, WE HAD A
NUMBER OF PAPERS PUBLISHED
COLLECTIVELY IN FEBRUARY,
LOOKING AND DEMONSTRATING OUR
RESOURCE AND THE BASIC GENETIC
DATA WE HAVE AND ITS UTILITY.
THIS IS LOOKING AT REPLICATING
KNOWN ASSOCIATIONS WITH LDL AND
THE GENOME WIDE ASSOCIATION
STUDY, LOTS OF PEEKS ARE KNOWN
THERE.
NEXT IS FETAL COMPARTMENT NOAM
GROUPS LOOKING AT SIMILAR
ANCESTRY GROUPS ON THE DUFFY
[INDISCERNIBLE] LOCATION WHICH
YOU KNOW IS ASSOCIATE WIDE
AFRICAN ANCESTRY AND THEN WE
TESTED A NUMBER OF ASSOCIATIONS
OF KNOWN IMEEN O TYPES AGAINST
CONDITIONS.
SO 117 DIFFERENT CONDITIONS AND
700 DIFFERENT GENETIC VARIANTS
THAT HAVE BEEN SHOWN IN
DIFFERENT POPULATIONS TO BE
ASSOCIATED AND YOU CAN SEE THE
REPLICATION RATES THERE AND WHAT
I ACTUALLY THINK IS REALLY ALSO
INTERESTING IN THIS IS IT
HIGHLIGHTS THE DISPARITY WE HAVE
IN GENETIC KNOWLEDGE OUT THERE,
SO YOU PROBABLY ARE WELL AWARE
THAT MORE THAN 90% OF THE GENOME
WIDE ASSOCIATION STUDIES OUT
THERE USE POPULATIONS OF
PRIMARILY EUROPEAN ANCESTRY, IF
YOU LOOK AT THIS, THE NUMBER
OF--WITH THESE 117 CONDITIONS,
THE NUMBER OF GENO TYPES
SOARKTED WITH THE DIFFERENT
LOCATIONS, WAS FAR GREATER TO
TEST THAN THE EUROPEAN ANCESTRY
POPULATION, THERE'S JUST NOT
ENOUGH POPULATIONS OUT THERE IN
STUDIES THAT HAVE BEEN DONE IN
DIVERSE POPULATIONS THAT WE KNOW
WHETHER THESE LARGELY ENTRONNIC,
LARGELY MARKER VARIANTS THAT WE
HAVE WHETHER THEY'RE ASSOCIATED
IN THAT ASSOCIATION PERSISTS
ACROSS DIVERSE POPULATIONS.
NEXT SLIDE.
WE HAVE RELEASED A STRUCTURAL
CALLING WITH OUR SNP DETAIL,
THIS ADDS 1 HALF MILLION
STRUCTURAL VARIANTS ON TO THE
DATA SO PEOPLE CAN USE THESE
DATA FOR FREE ON THE RESOURCE.
NEXT SLIDE.
AND THIS IS AN EXAMPLE OF
SOMETHING THAT IS VALUABLE TO
AGAIN, THE DIVERSITY OF OUR
POPULATION AND GETS TO CLINICAL
IMPACS, SO APOL 1 IS ASSOCIATED
WITH END STAGE KIDNEY DISEASE IN
PEOPLE OF AFRICAN ANCESTRY, AND
70% OF EXCESS ESKD RISK IN
AFRICAN AMERICANS IS THOUGHT TO
BE RELATED TO APOL 1.
SO IN ADDITION TO PEOPLE WHO HAD
2 COPIES OF THIS RISK VARIANT
AND THAT RARE VARIANT DISRUPTS
THE CHANNEL IN WAY WAY SUCH THAT
THESE INDIVIDUALS ARE PROTECTED
FROM THEIR RISK OF CKT OR END
STAGE KIDNEY DISEASE.
SO IT POINTS TOWARDS HOW THIS IS
A DRUGGABLE PERSPECTIVE AND HOW
THIS COULD BE TARGETED FOR
THERAPIES AND THERE ARE PHASE 1
DRUG TRIALS, IT MAY BE PHASE 3,
I'M NOT SURE THE STAGE.
BUT THERE ARE DRUG TRIALS
UNDERGOING WITH SMALL MOLECULES
THAT WORK TO INHIBIT THIS
CHANNEL AND APOL1 AND MITIGATE
THE RISK OF DISEASE THERE.
NEXT SLIDE.
WE SEE OURSELVES AS A FOUNDATION
FOR THE OTHER INSTITUTES AND
CENTERS TO BUILD ON.
WE CALL THESE ANCILLARY STUDIES,
WE DON'T CONSIDER ANN SILLARY
STUDIES, THOSE THAT USE THE CORE
DATA SET ISSUES THE CORE DATA
SET AT THE BOTTOM, THOSE 12,000
RESEARCHERS ARE USING NOW,
HOPEFULLY MANY MORE IN THE
FUTURE, THEY GET ACCESS TO ALL
THE DATA WE GENERATE, AND THEN
ON TOP OF THAT, PEOPLE COULD ASK
FOR BIOSPECIMENS, COULD GENERATE
NOW SURVEYS, COULD DO
INTERVENTIONAL TRIALS ON TOP OF
THAT, AND EXAMPLES ON THE SIDE,
WE DID A TODAY WITH COVID
EARLIER AND SERIES POINTSOLOGY
AND EARLY 2020.
WE HAD A PARTNERSHIP WITH
NATIONAL INTUITYS FOR MENTAL
HEALTH CALLED EXPLORING THE MIND
WHICH GIVES YOU QUANTITATIVE
TRAITS ON BEHAVIOR AND COGNITION
AND THERE'S NUTRITION AND HEALTH
WHICH IS DOING A DEEP STUDY AS A
CLINICAL TRIAL ACROSS
POPULATIONS, AND SO, THOSE DATA
AS ARE GENERATED WILL COME BACK
INTO THE CORE DATA SET THAT ALL
RESEARCHERS CAN USE AS WELL AS
CREATING NEW SCIENCE AND BEING A
NEW FOUNDATION FOR PEOPLE TO BE
MORE EFFICIENT IN DOG THEIR
SEARCH FOR STUDIES EMPLOY WE
HAVE 23 INSTITUTES AND OFFICES
INVOLVED IN OUR ANCILLARY
STUDIES RIGHT NOW SO WE REALLY
ARE SEEING SUPPORT ACROSS THE
NIH.
NEXT SLIDE, THIS IS TALKING
ABOUT MORE FOR
NUCLEOTIDESITITION FROM
PRECISION HEALTH.
THIS IS THE LARMINGEST OF
THESEIDE KINDS OF ANCILLARY
STUDIES WE'VE DONE SO FAR.
PART PART OF THIS MODULE 1 IS TO
ENROLL OUR PARTICIPANTS.
THEY DO EXTRA QUESTIONS ON DIET,
THEY WILL ACTUALLY COLLECT
MICROSPECIMENS ENCLOUDING
MICROBIOME, SO THEY ARE
RANDOMIZED TO SHORT-TERM KIET
INTERVENTIONS AND HAVE OTHER
MEASURES TAKEN AT THE END OF
THAT, SO WE CAN UNDERSTAND IN
THERE NATURAL ENVIRONMENTS AT
HOME AND AT WORK WHAT THE EFFECT
OF DIFFERENT DIETS EXPOSURES
COULD HAVE ON BIOMOLECULAR
MEASURES, AND A SET OF THOSE
WILL HAVE A LIVED IN DIET STUDY
WHERE THEY GO INTO A CLINICAL
RESEARCH ARE CENTER AND ARE
ADMINISTERS 1 OF THE 3 DIETS
HAVING A NUMBER OF MEASURES
TAKEN TO SEE THE IMPACT AND WE
CAN BASICALLY USE THOSE DATA WE
BELIEVE AND HOPE TO IMPUTE BACK
AND STUDY THE SCENARIO.
AND OF COURSE THERE'S A GREAT
PIECE FROM GOOD MORNING AMERICA
THERE THAT'S HIGHLIGHTED WHERE 1
OF THEIR CORRESPONDENTS ENROLLED
IN MPh AND TALKS ABOUT GETTING
THEIR RESULTS BACK AND TALKS
ABOUT WHAT IT'S LIKE AND NEXT
SLIDE.
I SHOULD MENTION THAT'S A
PARTNERSHIP WITH 18 INSTITUTES
AND CENTERS OFFICES WITH THE
COMMON FUND LEADING THAT
PROGRAM.
SO WITH ALL OF US AND NIMH, WE
STARTED EXPLORING THE MIND, THIS
GIVES YOU A SENSE OF WHAT IT
LOOKS LIKE FOR INTERFACE, WE
HAVE 4 CURRENT MODULES THAT GO
THROUGH AND TEST FOR EXAMPLE,
THE CITY OR MOUNTAIN AND YOU
PICK WHICH 1 IT IS, IT'S GETTING
REACTION TIME, HOW QUICKLY AND
HOW CORRECTLY YOU MAKE THOSE
ASSESSMENTS.
YOU CAN LOOK AT FACIAL
RECOGNITION OF EMOTIONS AND ALL
THOSE THINGS THERE, SO THIS HAS
BEEN SOMETHING THAT NIMH AND THE
MANY RAINCHL PROJECTS HAVE BEEN
RUNNING FOR SOMETIME.
BY BUTTING IT ON OUR PLATFORM,
WE HAD 73,000 PEOPLE THAT HAVE
COMPLETED SOME OF THESE TASKS.
MOST OF THESE HAVE OTHER KINDS
OF DATA AS WELL AND THIS CREATES
OBVIOUSLY A LONGITUDINAL MEASURE
THAT PEOPLE CAN GENERATE
MULTIPLE TIME POINTS IN AS WELL.
WE--YOU KNOW IN 6 MONTHS
COLLECTED MORE INDIVIDUALS DOING
THE TASKS THAN THE MANY BRAINS
PROJECT HAD IN 10 YEARS OF
RUNNING THE PROGRAM AND
OBVIOUSLY DIVERSITY IS GREATER
AS WELL.
NEXT SLIDE.
WE HAVE RECENTLY LAUNCHED A
PROJECT WITH THE NATIONAL
INSTITUTE FOR ENVIRONMENTAL
HEALTH SCIENCES.
TAKEN--THEY LOOKS AT
ENVIRONMENTAL RISK EXPOSURES ON
THE RISK OF TYPE 2 DIABETES,
THESE ARE PARTICIPANTS WHO DID
NOT HAVE DIABETES WHEN THEY
ENROLLED AND HAVE DEVELOPED
DIABETES SINCE ENROLLING, WE'RE
TAKING BIOSPECIMENS, DOING
EXPOSURE METHODS WITH THEIR
RESOURCE AND THIS WILL GENERATE
DATA FOR AROUND 5600 PEOPLE AND
IT WILL BE AVAILABLE FOR REUSE
IN A NUMBER OF OTHER KINDS OF
STUDIES AS WELL AND THIS CAN BE
DEPLOYED ACROSS OTHER DISEASES
IF WE FIND IMPORTANT EXPOSURES
HERE.
ONE OF THE IMPORTANT ASPECTS OF
THIS IS THE RAPIDITY OF WHICH WE
CAN DO THIS STUDY.
THIS WAS THE FIRST 1 WE DID SO
WE HAVE TO WORK OUT A LOT OF
MECHANICS OF DOING IT BUT
ESSENTIALLY WE WERE ABLE, ONCE
WE DESIGN WHAT WE WANT TO DO,
GET TARTED IN LESS THAN A YEAR.
YOU KNOW IT'S SO INEXPENSIVE,
10S OF THOUSANDS OF DOLLARS TO
PULL ALL THESE SAMPLES AND SHIP
THEM.
AND THEN YOU GET ESSENTIALLY THE
SAVINGS OF MILLIONS OF DOLLARS
OF WHAT IT WOULD HAVE COST TO
RECRUIT THESE PEOPLE.
NOT NONAPOPTOTIC MENTION ALL THE
OTHER DATA THAT COME FROM FREE
WITH THE GENOMES, THE EHRs,
SURVEYS THAT WE COLLECTED ON TOP
OF THAT AND HAVING A NATIONAL
DISTRIBUTION.
SO CONSERVATIVELY AT LEAST ITS
75% COST REDUCTION.
NEXT SLIDE.
IF YOU THINK ABOUT US IN SOME OF
THE NATIONAL DRIVES TOWARDS
THINGS LIKE WOMEN'S HEALTH,
POPULATIONS UNDERSTUDIED WHETHER
IT'S A RACIAL, ETHNIC OR SEXUAL
AND/OR GENDER MINORITIES THERE
ARE OPPORTUNITIES WITHIN OUR
DATA SET THAT ARE READY TO GO
AND THESE ARE THE CURRENT NUMBER
OF DATA SETS AVAILABLE TO
RESEARCHERS.
WE ARE A LARGE POPULATION, WE
ARE LARGER THAN MANY OF THE
OTHER POPULATION OUT THERE THAT
MAY BE AVAILABLE OF U.S. BASED
POPULATIONS TO DO THIS KIND OF
RESEARCH AND OF COURSE THESE
NUMBERS WILL CONTINUE TO GROW SO
WE REALLY HOPE TO FACILITATE
THIS KIND OF RESEARCH IN A
CONTINUING WAY.
NEXT SLIDE.
I WANT TO TALK MORE ABOUT
ALASKA, AMERICAN INDIAN AND
ALASKA NATIVE DATA.
SO WE HAVE LONG STANDING ENGAGED
WITH TRIBAL COMMUNITIES, OUR
TRIBAL NATIONS AS YOU WELL KNOW
THERE'S A KICKOFF RIN NATION
STATUS THERE.
WE DO NOT RECRUIT ON TRIBAL
LANDS AND DATA FROM PEOPLE WHO
SELF-IDENTIFY AS ALASKA
KAN--KANA--AMERICAN INDIAN
ALASKA NATIVE ARE CURRENTLY NOT
PART OF DATA SETS BEING RELEASED
AND THAT'S PART OF OUR
CONSULTATION WORK, SO IF YOU SEE
WE STARTED WITH ESTABLISHING A
TRIBAL COLLABORATION WORKING
GROUP.
WE HAVE REPORTS THAT HAVE BEEN
RELEASED AT VARIOUS TIMES
THROUGH THESE DIFFERENT WORKING
DPROWPS.
WE HAVE DONE A TOTAL NOW OF 3
CONSULTATIONS WITH TRIBAL
NATIONS AND HAVE RELEASED THOSE
REPORTS.
THE LAST OF THOSE CAME OUT IN
2023, OR SORRY, I GUESS WE DID
THE PROCESS THROUGH THE YEAR OF
2023, THE REPORT CAME OUT IN
JANUARY OF 24.
AND WITH THIS, WE'VE ESTABLISHED
A PROCESS, AND THOUGHTFULNESS
AROUND HOW WE WANT TO ENGAGE
WITH THE CURRENT SELF-IDENTIFIED
INDIVIDUALS WHO EITHER CLAIM
COMPLETELY AMERICAN INDIAN OR
ALASKA NATIVE OR SELECT THAT AND
OTHER RACE ETHNICITIES.
NEXT SLIDE.
SOME OF THE THINGS WE'VE COME TO
IS OF COURSE THE FOUNDATION OF
RESPECTING TRIBAL SOVEREIGNTY
THAT WOE HAVE AGREED WITHOUT A
SUBQUEPT DIRECT PARTNER SHOULD
BE WITH THE TRIBAL NATION TO NOT
RECRUIT ON TRIBAL LANDS OR
DIRECTLY IN ANY WAY SHARE
INFORMATION ABOUT TRIBAL
AFFILIATION WITHOUT DIRECT
APPROVAL AND PARTNERSHIP WITH
THE TRIBE.
WE HAVE DEVELOPED SPECIFIC
EDUCATIONAL MATERIALS FOR THOSE
WHO SELF-IDENTIFY THAT WE HAVE
DEVELOPED IN PARTNERSHIP WITH
OUR TRIBAL COMMUNITIES FOR
UNDERSTANDING, WE HAVE MESSAGED
SPECIFICALLY TO THEM, AND WE
HAVE ACTUALLY ADDED A
SIGNIFICANT AMOUNT OF NEW
REPRESENTATION INTO OUR PROCESS
WITH INDIGENOUS RESEARCHERS, WE
HAVA ADDED REPRESENTATION TO OUR
RESOURCE ACCESS BOARD AND OTHER
BODIES WITHIN OUR PROCESS.
NEXT SLIDE.
SO 1 OF THE THINGS WE'VE BEEN
DOING AS A RESULT OF OUR
CONSULTATION, IS A MODEL FOR HOW
WE WOULD INCLUDE TRIBAL DATA, I
SHOULDN'T SAY TRIBAL,
SELF-IDENTIFIED ALASKA NATIVE
AND AMERICAN INDIAN DATA
INTEREST OUR DATA SET IS TO
START A COUPLE INDIGENOUS-LED
DEMONITRATION PROGECS AND WE
HAVE A PROJECT BASED ON
PHENOTYPIC AND SURVEY DATA AND
THEN ANOTHER PROJECT THAT'S BEEN
LOOKING AT GENOMIC DATA OF
PEOPLE LED BY INDIGENOUS
RESEARCHERS OF PEOPLE WHO
SELF-IDENTIFY AS AIAN.
OUR GOAL IS TO GUIDE THIS DATA
SET, THOU THEY'RE INCLUDED, HOW
THEY'RE PROTECTED AS WELL AS
ALLOW INDIGENOUS WERE EVERYS TO
BE THE FIRST PEOPLE TO TELL
THESE STORIES ON TOP OF OUR
DATA.
NEXT SLIDE.
THROUGH THE WHOLE PROCESS WE'VE
COMMUNICATED WITH OUR
SELF-IDENTIFIED AIAN
PORTAISS--SYNTH PANTS, KEEPING
AWARE THAT MULTIPLE BODIES WE
HAVE BEEN WORKING WITH CARINA
AND RO, AND WORKING WITH ATAC
AND AS WELL AS OTHERS THROUGH
THIS PROESES IS, WITH THE NEXT
RELEASE WE WILL TART TO ENCLOUD
IN A PROTECTED WAY ON PEOPLE WHO
SELF-IDENTIFY WITHIN OUR
PARTICIPANT POPULATION AS AIAN,
RECOGNIZING THE LIMITATIONS OF
THAT, WE DO NOT KNOW WHO IS
ACTUALLY A TRIBE WILL MEMBER,
THEY ARE PEOPLE WHO ANSWER THE
SURVEY QUESTIONS AS
SELF-IDENTIFYING AS HAVING AIAN
RACE OR ETHNICITY.
WE HAVE DONE THE ADVANCED
NOTIFICATION IN ADDITION TO OUR
CONSULTATION EFFORTS OF TRIBAL
NATION GROUP ANDS DIFFERENT
ADVISORY GROUPS, WE WILL
DIRECTLY MESSOG OUR AI
SELF-IDENTIFIED PARTICIPANTS OF
COURSE UPDATING OUR WEBSITE IN
THE PROCESS AND WE HAVE CHANGES
TO OUR WORK BENCH ADVISING
RESEARCHERS AS THEY WERE USING
THE DATA OF SEARCH PROTECTIONS
AND HOW THEY THINK ABOUT THIS
WHICH IS NOT ALL THAT DISSIMINAR
BUT EXPANDED BECAUSE OF THE
UNIQUE SOCIOLOGICAL POLITICAL
CONTEXT TO OTHER KINDS OF
CONCERNS WEB CONNECTED HAVE
ABOUT PROTECTING USE OF THE DATA
OR STIGMATIZING RESEARCH.
IT'S A CLASS OF DATA, CLASS OF
PROTECTIONS THAT WE ARE
EXPANDING AND ADDING INTO THAT
ARE NEXT LEVEL TO THE TRIBAL
RELATIONSHIPS.
SO HOW NEW DATA WILL INCREASE
TOTAL PARTICIPANTS ABOUT 50% TO
BRING OUT TO OVER 6 HELPED
THOUSAND PARTICIPANTS THAT HAVE
AT A MINIMUM SURVEY DATA, OVER
400,000 OF THOSE WILL HAVE WHOLE
GENOME DATA OR ARRAY DATA, OUR
SEQUENCE NUMBER GOES UP ABOUT 3
FOLD, 2 ABOUT 2700 EMPLOY YOU
CAN SEE THE RESPONSES.
WE ARE ADDING IN A LOT MORE AS
WELL.
THERE ARE NEW SURVEYS, WE JUST
RELEASED THE HIGH LEVEL RACE AND
ETHNIC DESCRIPTIONS PEOPLE
SELECT, WE WILL BE ALSO
RELEASING THE SUBCATEGORIZATIONS
SO IF YOU MARK HISPANIC LATINO,
CAN YOU THEN MARK, WHAT KIND OF
HISPANIC LATINO ETHNICITY OR IF
YOU'RE ASIAN ARE YOU JAPANESE OR
CAMBODIAN OR VIETNAMESE, THOSE
EXTRA DETAIL WILL COME INTO THE
RESOURCE IN THE CONTROL HERE.
OUR FIT BIT DEVICES WE'RE GIVING
OUT WILL ABOUT QUADRUPLE TO
ABOUT 60,000 AND THAT INCLUDES
OF COURSE THE TYPICAL ACTIVITY
DATA AS WELL AS SLEEP DATA AND
IT WILL INCLUDE SOME OF THE
FIRST SELF-IDENTIFIED AIAN DATA.
NEXT SLIDE.
AND THEN FINALLY WITH OUR
AMBITIOUS VISION AND WHAT I'M
SEEKING TO ACOUCHLISH, I WOULD
BE REMISS WITHOUT RECOGNIZING
THAT WE ARE IN UNCERTAIN BUDGET
TYPES FOR OUR PROGRAM AND WHAT
WE'RE HEADING FOR.
THIS JUST SHOWS IN ORANGE AND
BLUE THE 2 SOURCES OF FUNDING WE
HAVE.
THE ORANGE REPRESENTS THE
FUNDING FROM THE 21st CENTURY
CURES ACT PASSED IN 2016, AND
THE BLUE REPRESENTS ANNUAL
APPROPRIATIONS AND YOU CAN SEE
THAT IN 2023, THE ANNUAL
APPROPRIATIONS WENT DOWN AS THE
2016 THROUGH CURES WENT UP SO
MUCH BUT WE DIDN'T GET AN
INCREASE LAST YEAR IN THE BASE
APPROPRIATIONS, WE RECEIVED A
34% CUT FROM OUR PRIOR LEVELS
WHICH REQUIRED US TO REDUCE
FUNDING TO MOSTLY, ACROSS ALL OF
OUR AWARDS, THE HARDEST HIT WERE
ENROLLMENT AND ENGAINLMENT.
THOSE WERE DECREASED UP WARDS OF
60% IN MOST CASES.
AND THEN WE'RE LOOKING FOR
POTENTIAL OF ANOTHER SIGNIFICANT
CUT IN PHYSICAL YEAR 25, THE
PRESIDENT'S BUDGET IS TO
INCREASE OUR ANNUAL
APPROPRIATIONS THAT COMPENSATE
FOR SOME OF THOSE DECREASES AND
THAT IS ALSO WHAT IS ON THE
SENATE MARK.
WE DON'T KNOW WHAT'S GOING TO
HAPPEN WITH OBVIOUSLY THE FINAL
PROCESS HERE, WE WILL HAVE A
HUGE RANGE OF OPTIONS IN TERPS
OF HOW WE MANAGE THE PROGRAM AS
WE GO FORWARD.
NEXT SLIDE.
I WANT TO END JUST WITH LOOKING
FORWARDS THE FUTURE, BOTH
LITERALLY FOR OUR COUNTRY AND
ALSO FOR OUR PROGRAM.
WE ARE REALLY LOOKING FORWARD TO
ESTABLISHING A PEDIATRICS
PROGRAM I MENTIONED WE ENROLLED
OUR FIRST CHILD AT THE END OF
2023.
WE ARE ENROLLING 0-18, RIGHT NOW
WE'RE FOCUSED ON 0-4.
WE ALSO ENROLL WITH PARENT OR
GUARDIAN AS PART OF THE PROGRAM,
AND RIGHT NOW WE HAVE THIS IN
THIS MORE LIMITED IN THE
END-TO-END ASSESSMENT BECAUSE
WE'RE NOT ABLE TO FULLY LAUNCH
THE PROGRAM DUE TO BUDGET CUTS
IN 5 SITES ACROSS THE COUNTRY
BUT PICTURE IN THE MITSD THERE
IS PROBABLY MY FAVORITE PICTURE
OF 2023 BECAUSE IT REPRESENTS
THE FOOT OF OUR FIRST CHIELGD
WHO ENROLLED EMPLOY AND REALLY
EXCITED FOR WHAT WE'RE DOING TO
BUILD THIS PROGRAM.
AND YOU KNOW CHILDREN ARE 20% OF
OUR COUNTRY'S POPULATION, A
HUNDRED% OF IT IS FUTURE, SO
IT'S IMPORTANT THAT WE'RE ABLE
TO ESTABLISH THIS FOR RESEARCH
ACROSS THE LONGEVITY AND LIFE
SPAN OF THE PROGRAM.
NEXT SLIDE.
WITH THAT I'M HAPPY TO TAKE
QUESTIONS, THE BIGGEST THANK YOU
OF COURSE GOES TO OUR
PARTICIPANTS WHO ARE MAKING THIS
JOURNEY POSSIBLE AND I THINK
THANK YOU FOR YOUR ATTENTION AND
TIME.
[ APPLAUSE ]
>> GREAT.
THANKS SO MUCH JOSH, I THINK WE
HAVE A FEW MINUTES IF FOLKS HAVE
QUESTIONS.
I ALREADY SEE A FEW TENT CARDS
GOING UP.
GREAT, I DON'T KNOW WHAT ORDER
SO WE'LL BOUNCE AROUND AND WE'LL
TART WITH RUSS AND GO TO DAVE
AND THEN I THINK IT WAS RAFAEL
AND THEN KEVIN.
>> SO REALLY FANTASTIC UPDATE,
SOME OF US HAD BEEN ON THIS
COUNCIL A WHILE WATCHING THIS
PROGRAM DEVELOP AND IT'S TERRIVE
BEING TO SEE THE--TERRIFIC TO
SEE THE DATA SET COMING
TOGETHER.
THE PEN ULTIMATE SLIDE IS
CONCERNING.
WHAT IS THE MAINTENANCE COST ON
THIS DATA SET, THE COMPUTER
SERVERS FOR THE PEDABYTES, IT
MUST BE PEDABYTES OF DATA AND
THE 5000 PLUS SPECIMENS, MANY OF
WHICH REQUIRE DEEP FRIEZ, WHAT'S
THE MINIMUM AMOUNT YOU NEED TO
KEEP THAT DATA SET INTACT 1, AND
2, WHAT ARE THE OPTIONS IF
THERE'S NOT A BUDGETARY SORT OF
RESCUE FOR THIS PARTICULAR
PROGRAM.
ARE THERE PARTNERSHIP
OPPORTUNITIES TO IN THE
COMMUNITY OR ANY OTHER
OPPORTUNITIES TO KEEP THIS DATA
SET ALIVE BECAUSE IT'S SO
VALUABLE TO SEE IT CUT OFF AT A
SET DATE?
>> THANK YOU.
THAT IS THE NUMBER 1 QUESTION
THAT WE ARE FOCUSED ON NOW.
WE PRIORITIZED AFTER THE--WE HAD
THE 34% BUDGET CUT AND FOR OUR
GOALS FOR THIS YEAR, TOWARDS A
LOT OF THAT IT'S WHAT WE CALL
OUR PRIOR TO 0 ACTIVITIES FOR
NOW EMPLOY WE ARE FIRMLY FOCUSED
IN WHAT HAPPENS IN THAT LOWER
BUDGET.
I WILL TELL YOU AT 158 WE DO GO
INTO A HIEBER NATION MODE IN
TERMS OF WHY JUST MAINTAINING
WHAT WE V. THE FIRST PRIORITY
HAS TO BE THE PROTECTION OF OUR
PARTICIPANTS, INVOLVES THINGS
LIKE INFORMATION SECURITY,
CYBERSECURITY, PROTECTION OF THE
SAMPLES, YOU CAN'T LET THEM THAW
AND THOSE SORTS OF THINGS, THERE
ARE HUGE CAPABILITIES AROUND
THESE THINGS AND THE UNFORTUNATE
THING IS IT WOULD MEAN A CUT TO
REALLY THE ALMOST ENTIRETY OF
THE ENROLLMENT AND ENGAGEMENT
INFRASTRUCTURE BECAUSE YOU HAVE
TO PROTECT THAT AND I HATE
SAYING THAT BECAUSE IT'S BEEN A
FOUNDATION OF TRUST THAT ENABLE
US TO RECRUIT SUCH A DIVERSE
POPULATION NTHIS HAS BEEN A BIT
OF NOW REOCCURRING THEME WITHIN
SOME OF THESE NIH PROGRAMS AND I
THINK ABOUT THE BRIDGE TO AI
PROGRAM WHICH THIS GROUP ALSO
VETTED AND APPROVED IN CONCEPT
CLEARANCE AND THEY'RE COMING UP
ON THE SAME ISSUE WHICH IS
THEY'RE DEVELOPING THESE FAIR
FANTASTIC MACHINE LEARNABLE DATA
SET ANDS THERE'S NOT REALLY A
NEXT PLAN FOR HOW TO CONTINUE TO
CURATE THE DATA NOT LET ALONE
LAUNCH THOSE BECAUSE THIS IS
LUNCH FUND THAGOREAN COMES FROM
THE DIRECTOR'S FUBD AND AS THIS
BECOMES A LARGER PART OF THE
SCIENTIFIC ENDEAVOR, IT BECOMES
A MAJOR ISSUE FOR THE NIEKS H IN
TERMS OF INSURING THAT THAT
INVESTMENT CAN BE CONTINUED.
>> AND YOUR SECOND PART, I WILL
TELL YOU WE DID EVEN WITH THE
BUDGET CUT WE HAD THIS YEAR
WHICH IS NOT NEARLY AS DRAMATIC
AS WHAT WE COULD BE FACING NEXT
YEAR, WE HAVE A LOT OF
PARTNERSHIPS WITH OTHER
INSTITUTES AND CENTERS WHO DID
COME IN AND HELP OUT, THE O. D.
HELPED OUT OTHER ICs WITH
DIFFERENT ANCILLARY STUDIES AND
DIFFERENT COMPONENTS AND HEY, WE
WANT TO HELP YOU GENERATE MORE
GENOMES, WE WANT TO HELP
ENROLLMENT IN THIS AREA, AND
THAT WAS HELPFUL BUT IT
WON'T--APPROXIMATE WON'T BE AT
THE SCALE THAT WE NEED.
SO YES, WE'RE ACTIVELY PURSUING
ALL THOSE OPPORTUNITIES.
GREAT, KEVIN AND 10 KENT AND
THEN RAFAEL.
I SEE YOUR HAND.
NTRY THIS 1?
IT'S ON, LOOK AT THIS.
I SEE IT'S TOTALLY ECLIPSED FROM
WHERE I'M SITTING.
ALL RIGHT, YEAH.
JOSH, I FIRST HEARD ABOUT THIS
WHEN I WAS ON THE NICHD COUNCIL
BACK FROM 2015 TO 19.
AND IT'S JUST WHAT MANY OF US
HAVE FELT WE NEEDED FOR A VERY,
VERY LONG TIME AND IT'S TERRIFIC
TO SEE HOW IT'S GOING.
I WILL ASK THE QUESTION I'VE
ASKED BEFORE JUST TO GET AN
UPDATE AND THAT IS IN YOUR
SURVEYS OF THE ADULTS AND YOU'RE
JUST STARTING WITH CHILDREN AND
THAT WILL BE HARDER, BUT ARE YOU
NOW ASKING ABOUT WHETHER THE
ADULTS HAVE EXPERIENCED
PHYSICAL, SEXUAL ABUSE OR
NEGLECT IN CHILDHOOD?
>> WE ARE.
YEAH, SO WE HAVE A MENTAL HEALTH
AND WELL BEING SURVEY WHICH ASKS
A LOT OF THOSE CHALLENGING
QUESTIONS.
THAT DATA SET WILL BE ARE--I
CAN'T REMEMBER THE EXACT
TIMELINE, IT WILL BE THERE I
THINK OVER THE NEXT, I THINK IT
WILL BE THERE OVER THE NEXT YEAR
BUT I CAN'T PROMISE IT.
>> OKAY.
AND HAVE YOU GIVEN THOUGHT AS
YOU ENROLL CHILDREN ABOUT HOW TO
THINK ABOUT THIS, THAT SAME
QUESTION PARTICULARLY AS IT
RELATES TO WHAT WE TALKED ABOUT
EARLIER THIS MORNING WITH THE
AGGRESSION STUDIES AND THE
VIOLENCE STUDIES.
BOYS ARE A BIG PART OF VIOLENCE
MOST BOYS WHEN THEY'RE ABUSED
ARE BEING ABUSED OUTSIDE THEIR
FAMILY AND MOST OF THE PARENTS
I'VE TALKED TOO OF BOY WHO IS
HAVE BEEN ABUSED NEVER THOUGHT
ABOUT THEIR BOYS BEING ABUSED
AND RAISING THE QUESTION IS
ACTUALLY SOMETHING THEY
APPRECIATE BECAUSE IT NEVER
OCCURRED TO THEM.
AND SO, AS YOU THINK ABOUT THE
ROLL OUT AND PROBABLY PAST 4,
YOU'RE NOT GOING TO BE ASKING 3
YEAR-OLDS, ABOUT, WE HAVE A
PAPER ABOUT HOW GOOD 3 YEAR-OLDS
ARE IN ANSWERING THAT QUESTION,
YOU MIGHT WANT TO THINK ABOUT
HOW TO BUILD IN WHAT'S GOING ON
WITH BOYS BETWEEN THE AGES OF 4
AND 10.
>> THAT IS A GREAT QUESTION AND
SOMETHING ALSO FOR A DIRECTOR OF
PEDIATRICS.
THAT'S A GREAT QUESTION AND IF
YOU DON'T MIND I LOSTLED TO
DIRECT YOUR WAY, SARAH
[INDISCERNIBLE] IS HER NAME AND
IT'S A GREAT, GREAT POINT.
>> RAFAEL?
>> I HAVE A FEW QUESTIONS, THE
FIRST 1 OF THE 610 PUBLICATIONS
WHAT PERCENT ARE NOT ALL OF US
RESEARCHERS?
LIKE HOW HAS THIS BEEN BEING
BY CIVILIANS.
>> SO THOSE NUMBERS REPRESENT
PEOPLE USING OUR DATA, THE VAST
MAJORITY OF THEM ARE NOT,
ALTHOUGH I HAVEN'T DONE THE
FORMAL ACCOUNT.
THAT'S EXCLUDING ALL KINDS OF
OTHER PAPERS JUST LED BY THE
PROGRAM TYPICALLY SO
THERE'S--THERE ARE GOING TO BE
RESEARCHERS THAT ARE PARTS OF
THOSE TEAM THAT ARE OTHERWISE
AOU RESEARCHERS BUT WE HAVE
12,500 PEOPLE ON THE RESOURCE
NOW AND WE DON'T HAVE ANYWHERE
NEAR THAT MANY RESEARCHERS THAT
ARE FUNDED SO IT TELLS YOU THAT
THE VAST MAJORITY OF PEOPLE ON
THE RESOURCE ARE NOT FUNDED BY
ALL OF US RESEARCHERS.
SO THE DATA SET IS INCREDIBLE
THAT HAVE YOU ALL THAT
CONNECTED.
NOW THIS IS ANECDOTAL BUT WE HAD
AN EXPERIENCE WHERE WE WERE
TRYING TO GET SOME GENO TYPE
ANDS ETHNICITIES TO DO--TO TEACH
PEOPLE HOW TO ANALYZE GENETIC
DATA AND WE GAVE UP ON ALL OF US
BECAUSE IT WAS DOWNLOADED DAILY
BASIS THEA AND WHEN WE TRY TO
USE THE RESOURCES AVAILABLE, THE
THINGS WE WANTED WEREN'T THERE,
SO WHAT'S THE REASON FOR NOT
LETTING PEOPLE DOWNLOAD, LIKE,
SO WE ENDED UP GOING TO 10,000
GENOMES AND IT WAS LIKE SUPER
EASY.
SO WHAT'S THE REASONING FOR NOT
LETTING OUTSIDERS DOWNLOAD DATA?
>> SO AS PART OF WHAT WE
DEVELOPED WITH OUR PARTNERSHIPS
WITH OUR PARTICIPANTS, YOU KNOW
WE HAVE ENIMAIJED AND TALKED TO
A LOT OF COMMUNITIES THAT ARE
HISTORICALLY NOT BEEN TREATED
WELL BY SCIENCE.
AND WHEN YOU GO INTO MARK
CON COUNTY GEORGIA AND TALK
ABOUT THE HEALTH SEVENS TUSKEGEE
EXPERIMENTS, THIS IS 1 OF THE
WAYS THAT THE DAT IS AS OPEN AS
THEY ARE, WE HELP PRESERVE THAT
TRUST AND SOMETHING THEY WANTED
IN THE MODEL IS THAT YOU HAVE TO
USE OUR RESOURCE TO ANALYZE THE
DATA.
NOW WE DO ALSO HAVE PROVISION
DOWNLOADING--
>> SORRY THE RESOURCE HAS SAFE
GUARDS TO NOT RECRETE THESE
VIEWS?
I DON'T SEE HOW THAT'S
DIFFERENT?
>> WELL, ONCE IT'S DOWNLOADED WE
LOSE CONTROL OVER WHAT HAPPENS
TO IT OR WHERE IT GOES OR THE
SAFETY OF THAT COMPUTE
ENVIRONMENT AND I'M SURE, YOURS
IS VERY GOOD, BUT ACROSS AN
INTERNATIONAL CIRCUMSTANCE, WE
DON'T NECESSARILY KNOW THAT
ESPECIALLY WHEN YOU GO BEYOND
EVEN THE NATIONAL BORDERS BUT
EVEN THERE WE CAN FACILITATE
SOME OF THAT IN NEW WAYS, THERE
ARE LOTS OF WAYS YOU CAN OF
COURSE DOWNLOAD AGGREGATE STUFF,
WE NEED TO BRING IN IF YOU GET
CLASSES TO USE IT, HAVE THE
CLASSES ALL USE IT WITHIN OUR
RESOURCE AND IF THERE ARE USE
CASES THAT WE'RE NOT SUPPORTING,
I WOULD LOVE, AND I KNOW THERE
ARE, AND I WOULD LOVE TO HEAR
ABOUT THEM AND HOW WE CAN GET
THERE BECAUSE WHAT WE WOULD LOVE
TO DO IS MAKE IT EASIER AND MORE
ACCESSIBLE TO MORE RESEARCHERS
TO DO IT THIS WAY, PRESERVE THAT
TRUST WITH OUR PARTICIPANTS AND
SO FAR, WE--WE HAVEN'T CHANGED
THAT DOWNLOAD POLICY FOR THOSE
REASONS.
>> YEAH, SO I CAN TALK TO YOU
LATER ABOUT IDEAS OF HOW TO
PERMIT IT CAN DEMONSTRATE THEY
WILL KEEP IT SAFE.
SO ANOTHER COMMENT AND IT'S NOT
A QUESTION, BUT I WILL MAKE A
COMMENT, I WOULD LIKE TO HEAR
YOUR OPINION ON IT.
SO 1 OF THE THINGS THAT FROM MY
WORLD OF METHODS DEVELOPMENT IS
THE IMPORTANCE OF HAVING ACCESS
TO RAW DATA AND BEING ABLE TO
TEST THINGS OUT, DEVELOP NEW
THINGS, THAT'S HOW MOST SOFTWARE
THAT'S USED TODAY IS ORIGINALLY
DEVELOPED AND SOME OF THESE
RESOURCES HAVE--THEY LIMIT YOU
SO MUCH, SO THEN, YOU'RE FORCING
WHATEVER THE GROUP DESIGHTICIDED
WAS THE RIGHT WAY TO PROCESS
THEM, TO GET STRUCTURE VARIANCE,
TO CALL SNPs, BUT THAT CAN BE
IMPROVED BUT TO GET IMPROVED 1
NEEDS FREE ACCESS TO RAW DATA
AND BE ABLE TO TEST THINGS OUT,
SO I DON'T KNOW IF THIS CAN
HAPPEN ON THIS PLATFORM.
>> WE WOULD LOVE TO KEEP CLOSING
THOSE GAPS.
SO I DON'T KNOW--
>> SAY IT AGAIN.
>> INITIALLY WE DIDN'T HAVE
THOSE BUT WE MADE THOSE
AVAILABLE IF YOU'RE LOOKING FOR
THAT BUT IF YOU'RE LOOKING
OF--THERE COULD BE OTHER
QUESTIONS AND WE DO WANT TO
SUCCESSIVELY OVER TIME MEET AND
OFFER NEEDS AS WE K.
>> MY LAST QUESTION IS RELATED
TO THE FIRST QUESTION ABOUT
BUDGET.
SO WHY DO YOU NEED SO MANY
PEOPLE IN LIKE HAVE YOU DONE A
CALCULATION OF SOME KIND?
>> OF PARTICIPANTS?
NYEAH, GREAT QUESTION, SO 1 WAY
OF LOOKING WAS COMMON DISEASE
AGGREGATION AND THEN POWER
ANALYSIS, FOR INSTANCE ON GENE
ENVIRONMENT INTERACTIONS, IF YOU
LOOK AT 1 CUT-OFF, CAN YOU LOOK
AT SOME OF THOSE IN THE ADVISORY
COMMITTEE, THE ADVISORY
COMMITTEE OF THE NIH DIRECTOR
REPORT FROM 2015 IN THAT, GOING
BACK AND REANALYZING THIS, WE
CAN DO, LOOK AT ABOUT 3 TIMES AS
MANY DECS IN A MILLION PEOPLE AS
WITH 3 FOLD IMPROVEMENT ON THE
20,000 THRESHOLD,OT SMALLER
THRESHOLDS, YOU KNOW YOU SEE AN
INCREASE AS WELL, AND THEN IF
YOU LOOK AT RARE DISEASE AND WE
OVERREPRESENT RARE DISEASE BUT
TO GET RARE DEC YOU NEED BIGGER
AND BIGGER SAMPLES NWELL THAT'S
MY QUESTION, MAYBE YOU'RE THERE
ALREADY AND YOU CAN STOP AND
FOCUS ON MAINTAINING IT GOING
FORWARD.
>> YEAH, I MEAN WE WOULD--IF WE
GOT TO A MILLION 3 TIMES AS MANY
DECS WE COULD STUDY, YEAH.
AND I THINK WE ALSO LOOK AT THE
RARE AND THIS IS IN PART WHY WE
HAVE THE REPORT COMING UP AFTER
THIS, WE ASKED THIS GROUP, LED
BY RHONDA FROM COC AND THEN ALSO
RUSS ALTMAN TO ANSWER SOME OF
THESE QUESTIONS ABOUT WHERE
SHOULD WE GO?
HOW MUCH BIGGER SHOULD WE GET?
WHERE ARE WE?
AND THEY CAME, I DON'T WANT TO
STEAL RUSS' THUNDER BUT THEY
FELT LIKE THERE WAS AN ADVANTAGE
TO INCREASE.
THE OTHER TOO IS KIDS.
THE OTHER THING NOW IS WE DON'T
HAVE KIDS SO IF OUR FOCUS IS ON
GROWING THAT COHORT AND THEIR
PARENTS ARE GUARDIANS THAT WOULD
BE A MAIORITY FOCUS MAYBE OF
THAT NEXT 500,000 ROUGHLY
SEQUENCES WE WOULD GENERATE.
>> SO SPEAKING OF RUSS, I THINK
WE'RE--HE'S PROBABLY ONLINE,
WAITING FOR THE PRESENTATION SO
IF WE COULD JUST VERY, VERY
QUICKLY, AND I AM SORRY TO CUT
KEVIN AND KENT AND LAUREN SHORT
BUT IF YOU COULD JUST EACH JUST
VERY BRIEF QUESTION THAT WAY WE
CAN GET ON TO THE IN ACCIDENT 1
AND OBVIOUSLY YOU CAN HAVE LOTS
OF CONVERSATIONS WITH JOSH
OFFLINE.
KEVIN?
>> YEAH, FIRST OF ALL WONDERFUL
PRESENT EGG, ALLATIVE MY
QUESTIONS WHICH ARE SMALL 1S
RELATE TO FUNDING SOURCES, SO
#1, IS PRIVATE FUNDING, THINKING
ABOUT FOGARTY, #2 INTRAMURAL
INVESTMENTS BECAUSE THERE MUST
BE INVESTORS HERE AND THE WAYS
IT WOULD HELP AND #3 GDPR,.
>> YES WE ARE LOOKING AT ALL
SORTS OF FUNDING AND PRIVATE
PARTNERS FOR SURE ESPECIALLY
SINCE OPENING COMMERCIAL ACCESS,
WE'RE GETTING A LOT MORE
INTEREST THERE IN TERMS OF DATA
GENERATION TO HELP MAKE THOSE
RESOURCE BETTER, IT ALSO
INCLUDES FNIH AND PARTNER THERE
AND OTHER THINGS, INTRAMURAL
RESEARCHERS WE ARE A NUMBER OF
INTRAMURAL RESEARCHERS, MOST
ICs REPRESENTED AND THAT COULD
GENERATE SUBSTANTIVE NEW EFFORTS
AS WELL, INCLUDING CLINICAL
CENTER WHICH WE HAVE THINGS IN
THE CLINICAL CENTER TO BE PART
OF THIS SO THAT WAS ACTUALLY
COMPONENTS OF GDPR WHETHER THEY
ENDED UP BEING THE LONG ATTEMPT
TO ACTUALLY BEING ABLE TO
ANNOUNCE INTERNATIONAL
RESEARCHERS BUT WE ADDRESS THE
KEY TO THE COMPONENTS WE HAVE TO
GET THAT OUT THERE.
>> KEVIN, I'M LOOKING AT YOU AND
SAYING KEVIN--KENT.
VERY BRIEFLY.
PLEASE.
>> SURE.
JOSH IT'S CLEAR FROM YOUR
PRESENTATION THAT YOUR
APPOINTMENT TO CEO WAS THE RIGHT
THING TO DO, SO CONGRATULATIONS
ON A JOB WELL DONE.
A QUICK YES OR NO QUESTION, YOU
TALK ABOUT SOAKERS AND DISEASE,
AND GENOMICS GENETICS QUESTION,
GENOMICS QUESTION BUT I WANT TO
GET TO CAUSATION.
SO PROGRAMS LIKE COMP WHICH
WE'RE TRYING TO DEFINE THE IN
VIVO FUNCTION OF ALL YEENS IN
THE IME NOAM HELPS ALONG WITH
THAT SO CAN YOU SAY IS A PROGRAM
LIKE THAT IMPORTANT TO ALL OF US
FOR INFORMING GENE FUNCTION SO
CAN YOU MOVE BEYOND ASSOCIATION
AND GET TO CAUSATION?
>> KENT, I THINK IT'S A GREAT
QUESTION.
YES IT'S SUPPOSED TO BE A YES NO
ANSWER BUT YES, IT IS IMPORTANT
TO IMPOSSIBLE TO BUILD GREAT
KINDS OF RESOURCES.
>> JUST A REMINDER JOSH WILL BE
AT DINNER TONIGHT, TOO SO YOU
CAN ASK MORE QUESTIONS OF HIM
TONIGHT.
>> OKAY, THANK YOU.
>> I APPRECIATE A THE LO OF
COMMENT VS BEEN ABOUT ACCESS TO
MAKE THE RESEARCH MORE USEFUL
AND THAT YOU HAVE SAID IN YOUR
DATA HAVE BEEN PROCESSED TO
PROTECT PARTICIPANT PRIVATE
PRIVACY BUT I WOULD CONSIDER
STRENGTHENING YOUR MESSAGES TO
PREVEPT UNAUTHORIZED ACCESS AND
HOW YOU ARE PROTECTING THE DATA
YOU HAVE BECAUSE IT IS SO
VALUABLE NTHANK YOU YES NAND
LINDA WILL BE THE LAST WORD?
>> SNK OKAY, SORRY, YEAH,
WONDERFUL DATA SET.
BUT 2 QUICK QUESTIONS, THE 600
PAPERS WERE DONE BY DIDN'T HAVE
FUNDING TO DO IT,.
>> I CAN'T SAY THEY DIDN'T
FUNDING, I THINK MOST PEOPLE
HAVE, IN IH FUNDING FROM SOME
SORT BUT IT'S NOT ALL OF US
FUNDS A PAYING FOR THOSE IN THE
VAST MAJORITY OF CASES.
>> SO ARE THERE SPECIFIC
MECHANISM, NIH MECHANISMS THAT
ALLOW PEOPLE TO PROPOSE THE USE,
THE DATA SET FOR DATA MINING
BECAUSE I WORK WITH ABCD DATA
SET, WE WANTED A SITE COLLECTING
DATA AND THERE ARE SPECIAL
MECHANISM FOR ANYBODY THAT WANT
TO USE THE DATA SET YOU CAN
COMBINE AN RO-1 OR R21 TO USE
THE DATA SET AND ANSWER SPECIFIC
QUESTIONS OR SIKE L OTHER NOVELO
ANALYZE THE DATA.
IS THERE A MECHANISM LIKE THAT.
>> WE HAD A SUPPLEMENT IN THE
PAST AND AN RO23 PROGRAM AS WELL
AND LOOKING THROUGH THOSE BEING
FUNDED AND PROPOSING ALL OF
THESE FOR ALL OF US, MOST ARE
UNSOLICITED SO MOST ARE JUST
GOING TO GENERIC RO-1 AND R21S
ET CETERA AND SAYING WE WILL USE
ALL OF US TO STUDY XYZ.
>> OKAY, SO THEY DO HAVE THEM
AND THEN THE OTHER STUDIES, THE
HBCD, HAVE YOU EVER THOUGHT
ABOUT MAYBE COLLABORATING WITH
THEM BECAUSE THEY'RE MORE
DEEP--THEY DO DEEPER PHENOTYPES
RIGHT IN SO HAVE YOU THOUGHT
ABOUT ALSO, BECAUSE I HATE
HEARING ABOUT NOT ENOUGH MONEY
SO I WOULDN'T SUGGEST DEEPER
PHENOTYPING WITH THIS BUT LIKE
BRINGS IN [INDISCERNIBLE] AND
OTHER BIOMARKERS?
>> IT'S A GREAT OPPORTUNITY.
WE HAVE HAD A LOT OF DISCUSSIONS
AROUND HBD AND HBCD AND HAD
ANOTHER COMBINATION OF THE LAST
2 DAYS AROUND THE COHORT AND WE
ARE VERY OPEN TO THOSE KINDS OF
DISCUSSIONS AND I THINK THAT'S,
YOU KNOW WE WANTED TO START AS A
PROGRAM THAT WOULD BE TRUE TO A
DISEASE DIAGNOSTIC VIEW AND THEN
AS WE DEVELOPED AND BUILT
INFRASTRUCTURE, I SEE THIS HAS
PART OF PLATFORM FOR THE FUTURE
FOR STUDIES LOAMACYIC THAT AND
HOW WE COULD LINK IN DATA AS
WELL, TREMENDOUSLY USEFUL, AND
STUDIES FOR GENETIC STUFF AND
NOTICE OF WHAT YOU'RE CLEBTING
ALREADY IN THE OTHER STUDIES,
TOO, YEAH.
>> OKAY, THANKS WELL OBVIOUSLY
THERE'S A TREMENDOUS AMOUNT OF
COUNCIL ON ALL THIS SO WE WILL
KEEP WITH THE THEME AND THE
TOPIC AND NEXT WE'RE GOING TO
HEAR FROM DR. RUSS ALTMAN ON THE
REFLECTION AND ADVANCEMENT
WORKING REPORT WHICH WAS REALLY
ASKED TO THINK ABOUT ALL OF US
AND THE SUCCESSES AND
OPPORTUNITIES THAT IT HAS HAD IN
THE PAST AND LOOK FORWARD ALSO
INTO THE FUTURE OF THE PROGRAM
AND SEE WHERE THERE ARE AREAS OF
MORE FOCUS BEING NEEDED MORE
ATTENTION BEING NEEDED AND HELP
US THINK THROUGH WHERE THE
PROGRAM SHOULD BE HEADED.
SO AFTER THE PRESENTATION WE
WILL HAVE A VOTE TO ACCEPT OR
DECLINE, I GUESS ACCEPTING THE
RECOMMENDATIONS THAT WILL BE
PRESENTED TO US FROM DR. ALTMAN.
SO WITH THAT I WILL TURN IT OVER
TO RUSS AND I KNOW RHONDA I WANT
TO RECOGNIZE YOUR ROLE ON THE
ALL OF US ADRISE REBOARD AND WHO
I KNOW YOU CONTRIBUTED AS WELL
TO THIS EFFORT.
I WANT TO TURN IT OVER TO RUSS.
>> THANK YOU.
CAN YOU HEAR ME?
>> YES, WE CAN.
>> I'M HAD THE MY
DEPARTMENTMENTAL RETREAT BUT I'M
IN HIGH HOTEL ROOM, THANKS TO
JOSH, HE SET ME UP BEAUTIFULLY
AND I WANT TO TELL YOU ABOUT
THIS REFLECTION GROUP THAT TOOK
A LOT OF DATA YOU JUST SAW AND
THOUGHT ABOUT IT IN THE CONTEXT
OF OUR ADVISING TO ALL OF US
OVER THE LAST 2 YEARS.
NEXT SLIDE, PLEASE.
SO THIS IS WHAT I WILL DO TODAY,
TELL YOU ABOUT WHY WE EXIST,
LAWEDDER DALE WE DID AND WHAT WE
FOUND.
THIS WILL BE 15 MINUTES I HAVE A
CLOCK NEXT TO ME SO WE HAVE AT
LEAST 15 MINUTES IF ARE MORE
QUESTIONS TO ME AND/OR JOSH.
NEXT SLIDE, PLEASE.
OKAY, NEXT SLIDE.
SO WE EXIST AS YOU ALL KNOW
THERE WAS A 2015 PRECISION
MEDICINE REPORT AND 1 THING IT
RECOMMENDED WAS AN INDEPENDENT
ADVISE REBOARD.
WE ARE THAT.
IT'S A GROUP I WILL SHOW YOU
PICTURES OF IN A SECOND THAT
MEETS A FEW TIMES A YEAR TO
PROVIDE FEEDBACK, GIVE THOUGHTS,
REVIEW AS WE'RE ABOUT TO DISCUSS
AND CATALYZE CONTINUED PROGRESS
OF THE PANEL.
IT'S A GREAT PRIVILEGE OBVIOUSLY
FOR US TO BE INVOLVED AND TO
WATCH THE STAFF AND YOSH MAKE
PROGRESS AS WELL AS RESEARCHERS
AND PARTICIPANTS.
SO WE HELPED ESTABLISH 5 YEAR
GOALS AND SUBWORKING DPROWPS ON
ISSUES OF SPECIAL SENSITIVITY OR
IMPORTANCE.
YOU HEARD ABOUT THE TRIBAL
COLLABORATION WORK AND I AM NOW
PRESENTING OUR REFLECTION AND
ADVANCEMENT WORKING GROUP.
I THINK YOU HAVE THE REPORT AND
YOU MAYBE EVEN SEEN THESE SLIDES
SO I WILL GET RIGHT TO IT.
NEXT SLIDE.
THERE WE ARE.
A GREAT GROUP COMING FROM
ACADEMIA INDUSTRY, GOVERNMENT,
VERY INTERACTIVE, AS YOU WILL
KNOW ONCE WE'VE HAD A FEW DINNER
ANDS GOTTEN TO KNOW EACH OTHER
WE CAN HAVE REALLY FRANK
PRODUCTIVE CONVERSATIONS AND I
WANT TO THANK ALL OF THESE
MEMBERS FOR THE PARTICIPATION
EMPLOY AND I COULD HIGHLIGHT
EVERY 1 OF THEM AND WHAT THEY
BRING TO THE TABLE BUT I WON'T
DO THAT, IT'S JUST A FABULOUS
FROWP AND HOPEFULLY RHONDA CAN
SUPPORT ME ON THAT.
NEXT SLIDE.
SO FOR THIS REFLECTION, MARILYN,
RHONDA AND I CREATED A
LEADERSHIP GROUP, THAT MEANS WE
SHOWED UP TO ALL THE MEETINGS
INSTEAD OF SOME OF THE MEETINGS
AND WE ALSO GOT TOGETHER FOR THE
WRITING AND I WANT TO THANK
MARILYN AND RHONDA FOR THE WORK
ESPECIALLY THE CRESCENDO I'VE
HEARD LEADING TO THE REPORT TO
GET IT TO YOU AND INTO YOUR
HANDS ON TIME.
NEXT SLIDE.
OKAY, SO OUR PURPOSE AND CHARGE
WAS TO,A ASSESSES THE EVOLUTION
ACHIEVEMENTS, CHALLENGES AND
OPPORTUNITIES FOR THE PROGRAM.
OBVIOUSLY THEY'VE BEEN MEETING
ON A REGULAR BASIS WITH THE
GROUP, SO, WE DID HAVE THAT
BACKGROUND.
WE KNOW MANY OF THE THINGS YOU
SAW IN JOSH'S TALK, AND OUR
DELIVERABLE WAS KIND OF A REPORT
THAT YOU'VE SEEN, I HOPE TO LAY
THE GROUND WORK FOR THE NEXT
PERIOD.
OUR PROCESS WAS TO GO TO OUR
MEETINGS, OUR NORMAL MEETINGS
WHERE WE HAD 1 MEETING DEVOTED
TO THIS REFLECTION ACTIVITY, AND
THEN WE HAD 4 FOLLOW UPS LOOKING
AT EACH OF THE 4 STRATEGIC AREAS
I WILL SHOW YOU IN A SECOND AND
I WANT TO ACKNOWLEDGE THE WORK
OF THE PEOPLE WHO PARTICIPATED
ON THE RIGHT.
AND I WANT TO SAY WE HAVE 2
GOALS HERE.
WE WANTED TO WRITE
RECOMMENDATIONS THAT REMEMBER
EXCITING, INNOVATIVE AND FRANKLY
WOULD PROBABLY COST MONEY, BUT
WE ALSO WANTED TO GIVE ADVICE
UNDER THE CURRENT SITUATION
WHICH YOU JUST SAW ON JOSH'S
ULTIMATE SLIDE WHERE WE DON'T
WANT TO BE POLYANNAISH ABOUT THE
REAL CONFLICTS OR NOT CONFLICKS
BUT SOME OF THE REAL RESTRAINTS,
CONSTRAINTS WAS THE WORD I WAS
THINKING OF, THE CONSTRAINTS ON
THE PROGRAM.
SO PLOAZ FORGIVE ME IF YOU SEE
IN OUR RECOMMENDATIONS, THIS MEX
TOUR OF EXCITED, WE SHOULD BE
DOING THIS AS WELL AS ADVICE
ABOUT HOW TO TIGHTEN THE SEAT
BELT, TIGHTEN THE BELT BUCKLE IN
PERIODS OF LARGE.
AND OF COURSE THERE'S
OPPORTUNITY THERE WHICH IS TO
FOCUS THE MIND ON WHAT'S REALLY
THE MOST IMPORTANT AS YOUR
QUESTIONS TO YOSH HAVE ALREADY
INDICATED YOU'RE WELL AWARE OF.
NEXT SLIDE.
SO THEY ASKED, THEY, JOSH AND
LEADERSHIP ASKED US 8 QUESTIONS
IN 4 AREAS.
AND SO OUR REPORT IS ROUGHLY
ORGANIZED AROUND THOSE
QUESTIONS, SOMETIMES IT BECAME
CLEAR SOME OF THE QUESTIONS WERE
SOPHISTICATED SIMILAR OR COULD
IT BE MERGED BUT I AS THE CHAIR
OF THIS REFLECTION TBROWP DIDN'T
WANT TO MESS WITH THE QUESTIONS
BECAUSE IT WAS LITERALLY PART OF
OUR CHARGE AND USUALLY YOU DON'T
CHANGE YOUR CHARGE.
SO WOE DID TRY TO ANSWER THESE
QUESTIONS AND THEY REALLY LED TO
AGREE CONVERSATIONS AND AS I WAS
SAYING THE FOLLOW UP MEETINGS
EACH CONTRAITED ON 1 OF THESE 4
AREAS ISSUES CHARTING PROGRESS,
CULTIVATING TRUST, ENSHINING
HEALTH EQUITY AND ENVISIONING
THE FUTURE AND SUSTAINABILITY.
NEXT SLIDE.
SO I WILL REMIND YOU WELL IS A
DOCUMENT, WE'RE PROUD OF AND I
HOPE YOU GET A CHANCE TO READ IT
AND HERE IF YOU HAVE READ IT,
THANK YOU, IF YOU HAVEN'T READ
IT, HERE'S THE CHEAT SHEET.
NEXT SLIDE EMPLOY FIRST OF ALL
WE WANT TO ACKNOWLEDGE BECAUSE I
WON'T BE TALKING ABOUT THIS VERY
MUCH, ALL OF THE STUFF THAT JOSH
JUST TOLD YOU ABOUT, I'M REALLY
AN AMAZING SPIN UP OF THIS
PROGRAM FROM JOSH AND HIS
PREDECESSORS OVER A REMARKABLY
SHORT PERIOD.
SO I'VE ALSO ADVISE THE UK BY O
BANK, THEY'VE EXISTED FOR AT
LEAST 10 YORES MORE THAN ALL OF
US AND THEY ARE OUTPACING US, SO
I WANT TO ACKNOWLEDGE THE
TGF BETA WORSE FORKS THE
PARTICIPANT WORKFORCE, THE STAFF
AND THE SCIENCE THAT'S ALREADY
COMING OUT AND I--WE--IF YOU ASK
ME DETAILED QUESTIONS ABOUT THE
SCIENCE, I MAY BE ABLE TO ANSWER
BUT I ALSO MAY GO TO JOSH.
IT'S BEEN A REMARKABLE PROGRESS
IN A NUMBER OF AREAS, I BEING
THE 1 WE WOULD HIGHLIGHT IS THE
GENOME SEQUENCING AND THE REPORT
BACK OF HEALTH RELEVANT FINDINGS
WHICH IS FAIRLY UNPRECEDENTED.
I WILL CALL IT UNPRECEDENTED
AMONG BIOBANK EFFORTS.
UK BIOBANK AS YOU MAY BE AWARE
SPECIFICALLY SAYS YOU MAY NEVER
HEAR FROM US AGAIN AND IT IS
SPECIFICALLY SOMETHING THAT ALL
OF US DID NOT SAY.
NEXT SLIDE.
AND THEN AS YOU ALREADY HEARD,
12,000 RESEARCHERS AND A LOT OF
PUBLICATIONS AND WE'VE HAD A
DISCUSSION OF THIS SO I WILL ASK
FOR THE NEXT SLIDE.
OKAY, SO 3 SLIDES IN OUR
EXECUTIVE SUMMARY, AND I HAVE 8
MINUTES LEFT.
SO MAYBE I CAN SLOW DOWN A
LITTLE.
FIRST A BIG SIGNAL FOR YOU, THE
STRENGTH OF THE COHORT IS THE
DIVERSITY COHORT AMONG ALLACIS
BUT ESPECIALLY INCLUDING
UNDERREPRESENTED GROUPS IN
BIOMEDICAL RESEARCH,
UNDERREPRESENTED GROUPS WITH
RESPECT TO SOCIOECONOMIC STATUS
AND THIS ACTUALLY, IT RELATES TO
THE REQUESTY THAT CAME UP IN THE
PREVIOUS SESSION ABOUT DO WE
NEED TO GET TO A MILLION.
WHEN YOU WANT TO SERVE ALL OF
THESE POPULATIONS WELL, THAT
GETS YOU TO A BIGGER NUMBER THAN
FOR EXAMPLE ISSUE THE UK BIOBANK
WHICH IS THE 500 K BUT HAS MANY
STRENGTHS AND I'M A BIG FAN BUT
IT IS NOT VERY DIVERSE AND WE'RE
LEARNING MOSTLY ABOUT NORTHERN
EUROPEAN ANCESTRY FOLKS AND
THAT'S THE BIG STRAIN, FULL TOP.
AND THEREFORE, AS JOSH PREDICTED
TO YOU, WE DID RECOMMEND THAT WE
CONTINUE TO BUILD THAT TO ITS
FULL SIZE, THIS WILL WILL GET TO
NUMBER 2 AND MAN TAIN ENGAGEMENT
AND BOTH OF THOSE THINGS ARE
THREATENED BY BUDGET CONSTRAINTS
SO WE HAVE TO ACKNOWLEDGE THAT.
AND WE HAVE TO GO TO NUMBER 2
WHICH IS WE THINK TO GET TO A
MILLION OR MORE AND WE DIVIDE UP
THESE UNDERREPRESENTED GROUPS
AND WE DON'T WANT TO DIVIDE THEM
UP BUT SOMETIMES FOR SOME
STUDIES YOU WANT TO LOOK AT
AFRICAN DISSENT PEOPLE OR LATIN
X PEOPLE AND WE WANT TO MAKE
SURE THEY'RE ALL WELL REPRESENT
EXCLUDE IF THOSE COHORTS ARE
MAINTAINED AND YOU KNOW CONTINUE
TO CONTRIBUTE.
SO THE SECOND PART OF OUR
ANSWER, NUMBER 2 IS THE
ENGAGEMENT OF THAT COHORT,
MAKING SURE THEY ARE ENGAGED AND
CONTRIBUTEACKIVELY AND TAKE
PRIDE IN THEIR PARTICIPATION, IS
ABSOLUTELY CRITICAL FOR THE
VITALITY OF ITS RESOURCE AND
ONGOING SCIENTIFIC VALUE.
THAT'S WHY WHEN JOSH SAID THAT
THERE WAS A 60%, I MIGHT BE
GETTING THE NUMBERS WRONG BUT
THERE WAS A HUGE CUT IN THE KIND
OF ONGOING ENGAINL AM
ACTIVITIES, THAT IS AN
EXSTENTIAL THREAT WHICH WE ARE
WORRIED ABOUT BECAUSE SOME OF
THESE GROUPS ARE NOT FREQUENT
PARTICIPANTS IN BIOMEDICAL
RESEARCH, THIS MAY BE THEIR
FIRST EXPERIENCE THEY'VE BEEN
TOLD IT'S A NATIONAL PRIORITY
AND WHEN YOU CUT THE BUDGET,
THEY SAY, OR THEY ASK DOES THAT
MEAN YOU DON'T REALLY CARE ABOUT
INCLUDING US IN THE EFFORT.
SO THAT'S IMPORTANT.
AND WHEN YOU ASK THE QUESTION
ABOUT KEEPING THE FEEDERS
RUNNING, WHICH IS ABSOLUTELY
CRITICAL, THE SPECIMENS MUST BE
MAINTAINED BUT RIGHT AFTER THAT
OR AT THE SAME LEVEL IS THE
CONTINUED ENGAGEMENT AND TRUST
BUILDING.
OKAY, THIRD POINT WE MADE IS
THAT THIS PEDIATRIC DEVELOPMENT
YOU HEARD ABOUT.
IT'S ABSOLUTELY CRITICAL.
BUT IT'S KIND OF RIDICULOUS TO
IMAGINE A LONGITUDINAL STUDY
THAT DOESN'T HAVE PEDIATRIC
COHORT BECAUSE WE'RE GOING TO BE
ABLE TO SEE THE FULL SPAN OF
EXPOSURES AND THE WAY THAT THEIR
HEALTH EVOLVED OVER TIME AND
IT'S GOING TO BE INCREDIBLY
VALUABLE.
RELATED TO THAT, THE MOST
VALUABLE PEDIATRIC PARTICIPANTS
WILL BE THOSE WHOSE FAMILY
MEMBERS ARE ALSO INVOLVED IN THE
COHORT SO DPENERATIONAL CENTER
FOR EXCELLENCE ON AGINGS CAN BE
OBSERVED SO WE MADE A SPECIFIC
RECOMMENDATION AND THIS IS WELL
KNOWN TO THE PROGRAM THAT THEY
REPRESENT A PARTICULARLY
VALUABLE FIRST PART OF THE
COHORT.
NEXT SLIDE.
NUMBER 4, THIS IS A BIT OF
LOGISTICS BUT IT'S VERY
IMPORTANT THAT THESE PLATFORMS
THAT ALL OF US IS BUILDING FOR
INTAKE AND DISSEMINATION OF THE
SURVEYS AND DATA HAVE TO BE
STATE-OF-THE-ART, THEY CAN'T BE
ALLOWED TO GET OLD AND
[INDISCERNIBLE].
THIS IS A NONTRIVIAL THING TO
SAY IN THE TIME WHEN SOFTWARE
ENGINEERING IS EXPENSIVE AND
DIFFICULT.
WE RECOMMEND THERE'S ALWAYS THIS
BUY VERSUS BUILD DECISION FOR
ECONOMIC AND FLEXIBILITY AND WE
HAVE TO BE CAREFUL THAT THE
AWARDS ARE ALWAYS COMPETITIVE
AND CONSTRUCTED IN A WAY THAT IF
WE HAVE A PARTNER THAT'S NOT
BEING SUCCESSFUL AND
THEREFORING, THAT THERE'S A WAY
TO TRANCE FER THERE DUTIES TO A
NEW PARTNER AND SO THAT REQUIRES
CREATIVE FORETHOUGHT IN THE
KRAIGZ OF THE COMPETITIVE AWARDS
TO MAKE SURE WE DON'T GET LOCKED
INTO THINGS WE DON'T WANT TO BE
LOCKED INTO, SO WE ACKNOWLEDGE
THIS AND WE HAVE DETAILED ADVICE
ABOUT THAT.
NUMBER 5 THE DIVERSITY OF
RESEARCHERS MUST MATCH THE
DIVERSITY OF THE COHORT, SO THAT
THE QUESTIONS ARE ASKED ARE
RELEVANT, PERTINENT AND BUILD
THE TRUST OF THE PARTICIPANTS
WHO WILL SAY YES,IME FLAD YOU'RE
ASKING THAT.
WE HEARD A GREAT EXAMPLE IN THE
QUESTION ABOUT CHILD ABUSE
EARLIER, AND THAT'S THE KIND OF
THING WE MUST PAY ATTENTION TO.
WE ALSO MUST MAKE SURE THAT THE
FULL SET OF RESEARCHERS,
INDUSTRY, PAYERS, GOVERNMENTS,
MULTIPLE DISCIPLINES ARE
INCLUDED INTO THIS UNBELIEVABLY
VALUABLE RESOURCE.
NIH AND RESOURCES ARE NOT THE
FIRST THOUGHT THAT RESEARCHERS
OUTSIDE OF THE NORMAL CHANNELS
THINK OF TRUST, TRUST, TRUST,
TRUST, NUMBER 6, AGAIN,
PARTICIPANTS MUST--BECAUSE OF
OUR CONTRACT WITH THE
PARTICIPANTS THEY MUST CONTINUE
TO BUILD TRUST AND THAT A VERY
HIGH PRIORITY THAT CANNOT BE PUT
IN THE BACKGROUND.
AND THEN IN TERMS OF BROADENING
OUT, WE MADE A STRONG
RECOMMENDATION THAT ESPECIALLY
IN TIGHT FINANCIAL TIMES YOU
HAVE TO HAVE COLLABORATIONS,
COMPANIES WILL PAY FOR CERTAIN
KINDS OF DATA TO BE COLLECTED,
ANCILLARY STUDIES WITH OTHER NIH
INSTITUTE ANDS SUPPLEMENTARY
SITES, ALL OF THOSE THINGS
INTRODUCE THE PARTICIPANTS TO
NEW GROUPS AND SO, THE ALL OF US
HAS TO FIGURE OUT HOW TO
INTRODUCE THOSE GROUPS TO THE
PARTICIPANTS SO THAT THEY DON'T
FEEL A LOSS OF TRUST BECAUSE
THEY MAY BE COMFORTABLE WITH THE
NIH BUT THEY MIGHT NOT BE
COMFORTABLE WITH ALL THE NIH
INSTITUTES BECAUSE THEY NEVER
HEARD OF THEM OR CUTCHES ARE
THEY GOING TO STEAL MY DATA?
BUT IT'S A CHALLENGE WE
ACKNOWLEDGE BECAUSE IT HAS TO BE
DONE BECAUSE THAT'S THE SOURCE
OF NEW DATA WITH A FLAT OR
NEGATIVE BUDGET.
WE THINK THERE'S AN OPPORTUNITY
FOR ALL OF US TO BECOME A KEY
RESEARCH RESOURCE FOR
TRANSLATIONAL RESEARCH TO
SUPPORT THE SCIENCE OF
TRANSLATION AND SO WE WANTED TO
TAKE UP THAT MANTEL.
NOT THAT IT HASN'T, BUT
TRANSLATIONAL RESEARCH ALL OVER
COULD BENEFIT TRUSTEES A MILLION
PATIENT WHO IS
RAISED--PARTICIPANTS WHO RAISED
THEIR HAND AND SAID I WANT HELP
AND WE DIDN'T WANT TO LOSE THAT
OPPORTUNITY TO MAKE IT AN
ENGINE.
AND THAT MEANS THERE SHOULD BE
MORE INTERACTIONS WITH THE NIH,
INSTITUTE ANDS CENTERS USING ALL
OF US, WE JUST HEARD A QUESTION
ABOUT HAVING THEM CONTRIBUTE
DATA, WE THINK THAT EVEN MORE
POWERFUL MIGHT BE ALL OF US
CONTRIBUTING THE PATIENTS WHO
ARE IN THESE, IN THEIR BIG
COHORT STUDIES.
THAT'S TRICKY BECAUSE WE ALL
KNOW THAT PEOPLE LIKE TO BUILD
THEIR OWN COHORTS.
IT'S A PECULIAR LITTLE HUMAN I
THINK.
BUT WE HAVE TO MAKE SURE THAT
ALL OF THOSE, EVERYTHING IT CAN
TO MAKE THE VALUE PLAY THAT THEY
CAN SAVE TONS OF MONEY FOR ALL
OF THE NIH, IF THEY WILL
CONSIDER USING THE ALL OF US
COHORT WHEN POSSIBLE FOR THEIR
STUDIES.
NEXT SLIDE.
ALMOST DONE.
I ALREADY SAID COLLABORATIVE
PROJECT, UK DATABASE HAS SHOWN
US YOU CAN GET A LOT OF IT FREE,
NOT REALLY FREE BUT REALLY
CHEAP.
THEY NEED A STABLE CORE BUDGET
THAT'S EASY FOR US TO SAY, BUT
WE DON'T KNOW EXACTLY HOW TO DO
BUT WE WANT TO SAY TO ANYBODY
INTERESTED IT'S A 30 + YEAR
HORIZON PROGEC AND THEY MUST
HAVE THE MUST HAVES AND NICE TO
HAVES, AND I WILL FINISH LIE
SAYING COVID SHOWED US THAT ALL
OF US COULD BE AN ARK MAZING
RESOURCE TO NATIONAL RESPONSE
EMERGENCIES AND WE THINK THAT
WILL HAPPEN AGAIN IN MANY OTHER
DOMAINS AND SO WE WANT ALL OF
US, WHEN IT GETS A CHANCE TO
BREATHE, TO FIGURE OUT HOW IT
CAN BUILD AND TEST ITS
CAPABILITIES TO BE A LEADER OF
MULTIINTUITION AND WHAT I MEAN
IS MULTIAGENCY ACROSS THE
FEDERAL GOVERNMENT COLLABORATION
IN AREAS THAT ARE ONGOING HEALTH
URGENCYS, OR EMERGESS.
COVID GAIP UP A LITTLE TASTE.
IT WAS EARLY IN THE LIFE OF THE
RESOURCE BUT IT WAS AMAZING AND
WHEN YOU THINK ABOUT THE OTHER
HEALTH SCOURAGES, THE IDEA THAT
ULTIMATELY OF US COULD BE
CENTRAL TO RESEARCH RESPONSE TO
THOSE WE DON'T THINK IS A CHANCE
TAKEN--THEY CAN BE MISSED.
NEXT SLIDE.
SO I WILL JUST SAY THIS IS OF
COURSE IN THE SETTING OF THESE
BUDGET CONSTRAINTS.
WE TRIED NOT TO BE POLYANNAISH
AS I SAID BUT OF COURSE THEY
MUST MAINTAIN EXISTING COHORT
AND SASMYS, THEY MUST MAINTAIN
TRUST AND THEN WE NEED, WE ALL
NEED THOSE OF US WHO ARE FANS TO
DO WHAT WE CAN TO MAKE SURE THIS
BUDGET BECOMES TABLE AND IN SOME
SENSE BUILT-IN FOR THE NEXT 3 OR
4 DECADES.
NEXT SLIDE.
>> THANK YOU SO MUCH, WE CAN GO
OVER IF WE NEED TO, I WANT TO
MAKE SURE THERE'S AMPLE
OPPORTUNITY TR QUESTIONS, I WILL
DO THINGS IN REVERSE OF HOW WE
DO THEM ALL DAY, SO I WILL START
WITH HANDS RAISED VIRTUALLY SO
KENT KICK IT UF.
>> SURE.
RUSS, GREAT REPORT SO FOCUSING
ON POINT #6 AND POINT #8.
THIS IS SOMETHING TO THINK
ABOUT, YOU KNOW THERE ARE OTHER
PROGRAMS ARE DOING WHAT ALL OF
US ARE TRYING TO DO AT LEAST IN
PARALLEL, THE VAs MILLION
PROGRAM, YOU KNOW REGENERON HAS
650,000 PARTICIPANTS IN THEIR
GENETICS THING AND AS YOU
MENTIONED GENOMIC SIGNALS SO IS
THAT YOU MEANT IN TERMS OF
COLLABORATION, OR IF NOT, WHAT
IS THE POTENTIAL FOR ALL OF US
TO ACTUALLY ENGAGE AND EMERGE
BUT ENGAGE AND COLLABORATE WITH
ALREADY EXISTING DATA SETS.
AND FIND COMMONALITIES OF
PURPOSE IN ORDER TO ADVANCE IF
THAT'S WHAT YOU'RE TRYING TO DO
WITH ALL OF US.
>> THANK YOU.
IT'S A GREAT POINT AND IT WASN'T
EXACTLY WHAT I WAS REFERRING TO
BUT I WANT TO EXPAND ON IT,
SINCE YOU'RE GIVING ME THE
CHANCE, SO 2 THINGS FOR THE
ANCILLARY AND SUPPLEMENTARY
STUDIES WE WANT ALL OF US TO
MAXIMIZE THIS OPPORTUNITY TO
FIND PARTNERS WHO WANT TO ASK
QUESTIONS WHERE THEY'RE WILLING
TO PAY FOR THE DATA OR FOR THE
ANALYSIS THAT NEEDS TO BE DONE.
AND AS I'VE SAID, UK BIOBANK HAS
HAD A LOT OF LUCK.
THEY DIDN'T PAY FOR ANY OF THEIR
SEQUENCING IS MY UNDERSTANDING
THEY GOT IT FOR FREE BECAUSE OF
A DEAL.
SO THAT WAS WHAT I MEANT BY
TAKING ADVANTAGE OF INDUSTRIAL
EXCITEMENT ABOUT THIS COHORT TO
REETLE RADIOYLY GET AS MUCH FREE
STUFF AS POSSIBLE.
THERE'S A SECOND I'M
HIGHLIGHTING WHICH A NETWORK OF
BIOBANKS NOW, AROUND THE WORLD
AND AND I DON'T KNOW IF IT'S
RIGHT, THAT GIVES YOU AN ORDER
OF FLOABAL SUBSTANTIAL COHORTS
THAT HAVE BEEN ASSEMBLED AND
IT'S SO EXCITING AS I THINK YOU
ARE IMPLYING TO THINK ABOUT HOW
TO DO INETTA ANALYSIS ACROSS ALL
OR MOST OR SOME OF THESE
RESOURCES AND I KNOW ALL OF US
STAFF IS THINKING ABOUT THIS,
THEY FUNDED MY LAB THIS IS A
SEPARATE MATTER BUT MY LAB IS
LOOKING AT THIS IN WAYS TO DO
THAT, HOW DO WE GET THE LINGA
FRANKA TO COMBINE DATA IN
SCIENTIFICALLY TRUSTWORTHY WAYS
TO GET ANSWERS THAT NONE OF US
COULD ANSWER EVEN WITH A MILLION
BUT WITH 7 MILLION MAYBE THOSE
ANSWERS ARE IN, SO VERY
IMPORTANT CHALLENGE AND 1 CHUCK
[INDISCERNIBLE] A LEADER
[INDISCERNIBLE] HAS BEEN VERY
INVOLVED IN THESE FLOABAL
ASSOCIATIONS SO ABSOLUTELY IT'S
IMPORTANT AND I THINK THEY'RE ON
THE BALL WITH THIS.
NGREAT, RHONDA AND THEN RAFAEL.
OKAY, SURE.
YEAH.
>> HI, RUSS, SO I ASKED THIS IN
THE PREVIOUS SPEAKER, I'M
WONDERING ABOUT THE SIZE, YOU
SAY A MILLION SO IT'S SURPRISING
THAT YOU DID A POWER CALCULATION
AND IT CAME OUT TO BE A NUMBER
LIKE THAT SO CAN YOU TELL US HOW
YOU ARRIVEDDA THE THAT NUMBER
BECAUSE, THE REASON I ASK IS
BECAUSE THE BIGGER YOU MAKE IT
THE COSTLIER OF KEEPING THE DATA
IS AND MAYBE PIE INCREASING
SAMPLE SIZE, YOU MAKE THE
PROJECT UNSUSTAINABLE?
>> IT'S A GREAT POINT.
WE DIDN'T DO CALCULATIONS WE
RELIED ON STAFF TO SHARE THEIR
ASSESSMENTS WITH US AND IT'S A
BIG 1 AND THEREFORE I WILL LET
JOSH ANSWER MORE IF HE UPONS
WHEN I'M DONE.
BUT WE WERE PERSUADED AND OF
COURSE YOU MAY A VERY GOOD POINT
HOW CONVENIENT THAT 1 MILLION BE
SUCH A NICE ROUND NUMBER, IT'S A
LITTLE BIT TOO GOOD TO BE TRUE.
I THINK THAT INFORMALTY AND
NONQUANTITATIVELY, IT'S WHAT I
SAID IN THE PRESENTATION WHICH
IS, THE FACT THAT WE HAVE SUCH A
DIVERSE POPULATION AND THE FACT
THAT UK BIOBANK IS CLEARLY
MAKING GOOD DISCOVERIES ON A
MOSTLY NOT DIVERSE GROUP WITH
500 K, AND MANY OF THOSE ARE
RIGHT AT THE BORDER OF
SIGNIFICANCE.
IT KIND OF PASSES THE SMELL TEST
THAT WHEN YOU HAVE A MORE
DIVERSE POPULATION, SOMETHING
LIKE 2-4 X WOULD BE REQUIRED.
ALSO THE INTRODUCTION OF
PEDIATRIC COHORT ADDING ADDING
ADDITIONAL LONGITUDINAL COHORT
SO I THINK YOU CAN IMAGINE, I
THINK YOU PROBABLY ARGUE THAT A
MILLION IS LOW BUTIME NOT IN A
POSITION TO DEFEND THAT NUMBER
BASED ON THE POWER CALCULATIONS.
>> THAT'S SOMETHING I ALSO ASKED
JOSH BUT NOW A LITTLE BIT
REFINED GIVEN THE DECUSHION WE
HAD SO I ALSO WORRY ABOUT THIS
RESOURCE BEING UNDERUSED BY
RESEARCHERS BECAUSE IT'S
SO--IT'S A LITTLE BIT CUMBERSOME
TO GET ACCESS TO THE DATA
ESPECIALENTIALLY COMPARED TOEN
THOUSAND GENOMES AND THE
BIO--UK BIOBANK.
ANY THOUGHTS ON THAT.
NYEAH, SO LET ME SAY THEY HEARD
YOUR QUESTION LOUD AND CLEAR AND
IN MY OWN LAB AS A SCIENTIST NOT
AS AN ADVISOR WE EXPERIENCE SOME
OF THIS PAIN THE WAY, JUST THE
SIMPLE WAY THAT BCS FILES ARE
STORED IS CUMBERSOME AND I DO
SPEND TIME WITH MY STUDENTS
WHERE THEY'RE GROANING ABOUT THE
STUFF, AND THEY SAY WHY CAN'T WE
JUST HAVE THE DATA.
SO THAT'S ONLY TO SAY, THAT I
HEAR WHAT YOU'RE SAYING AND IN
PART OF MY BRAIN, I UNDERSTAND
COMPLETELY.
I LIKE YOUR IDEA OF A POTENTIAL
METHOD FOR CREDENTIALING BOTH IS
THE CURITY AND USES OF DAILY
BASIS THEA AND SEND IT OUT BUT I
DON'T WANT TO DISRUPT AND MESS
UP ALL OF US' ENTIRE PLAN.
I CAN TELL YOU THAT MOVING DATA
OF THIS MAGNITUDE ARK ROUND HAS
A HUGE COST IN TERMS OF INTERNET
BAND WIDTH AND RISK THAT NOT
JUST ALL OF US BUT THE UK
BIOBANK AS YOU KNOW AFTER MANY
YEARS OF GIVING THE DAILY BASIS
THE--DATA TO US HAS SAID NOPE,
YOU NEED TO WORK WITH THE
GENOMIC DATA ON OUR COMPUTERS,
ALL OF US HAVE DONE THIS AND
MANY BIOBANKS ARE MOVING TO THIS
AND PROVIDE THE COMPUTE AND
LET--BUT HAVE THE DATA STAY IN 1
PLACE.
THAT'S--FOR THOSE OF US WHO ARE
DOING A LOT OF AI AND I WILL
SUSPECT YOU ARE DOING THIS, TOO,
I'M DOING THIS, THAT'S DIFFICULT
BECAUSE WE HAVE SPECIAL HARDWARE
THAT'S AVAILABLE TO US, WE HAVE
SPECIAL WAYS OF PREPROCESSING
THE DATA, I THINK THAT WE CAN
CONSIDER THIS AN OPEN CHALLENGE
I KNOW ALL OF US WANTS TO
FACILITATE THE SCIENCE.
I AM SPEAKING FOR MYSELF NOW,
THIS IS NOT A FINDING OF THE
GROUP.
I THINK THAT'S IMPORTANT TO SAY.
BUT I DO THINK THAT MOSTLY THIS
IS A GOOD THING BECAUSE IT'S
ACTUALLY VERY DEMOCRATIZING
BECAUSE ANYBODY WHO'S A
RESEARCHER CAN GET ON THE SITE
AND THEY HAVE ROUGHLY EQUAL
ACCESS TO COMPUTE AND TO DATA.
THERE ARE MAYBE GROUPS WHO ARE
MERITORIOUS AND DESERVE SPECIAL
ACCESS, THAT'S A COMPLICATED
DISCUSSION BUT MAYBE A
DISCUSSION THAT AT SOME POINT
WOULD BE WORTH HAVING, SO I'M
TRYING TO BE DELICATE, SENSITIVE
AND SUPPORTIVE TO EVERYONE IN MY
ANSWER YET TRUTHFUL.
>> THANK YOU.
>> VERY DIPLOMATIC.
ALL RIGHT, RHONDA YOU WANT TO
CLOSE US OUT THEN ON THIS
SESSION EMPLOY.
>> SURE, THANK YOU.
THANK SO MUCH AND AS PART OF THE
ADVISORY COMMITTEE I'VE BEEN
TAKING COPIOUS NOTES IN TERMS OF
COMMENTS BEING MADE AND I THINK
THEY'RE ALL VERY VALID AND
CERTAINLY HAVE BEEN HEARD.
YOU KNOW WE HAD A VERY HOW WOULD
YOU SAY INTERESTING DISCUSSION
TODAY, THE SUBJECT OF THE SMRB,
CAME UP AND IT'S I BELIEVE IN
KARMA BECAUSE IN A WAY THE WORK
THAT I ENVISION OR THINK THAT'S
GOING TO HAPPEN, OR THE INTENT
OF THE SMRB, IT SEEMS TO ME THAT
ULTIMATELIA OF US IS A GREAT
WHAT I CALL ICON, IT CAN BE USED
TO AGAIN FIGURE OUT HOW THE SMRB
CAN BE AFFECTED.
YOU HAVE HEARD MANY OF YOU SAY
THAT THERE ARE OTHER STUDIES
THAT ARE OUT THERE, THERE'S
OTHER CAPABILITIES THAT ARE
LINED OR SIMILAR TO ALL OF US.
TO ME THAT'S AN OPPORTUNITY FOR
LOOKING AT COLLABORATION AND
SOME CONSOLIDATION, NOT
NECESSARILY BUDGET CUTTING, BUT
CONSALIVA--SALIVAIDATION SO THAT
YOU BUILD ON COMMONALITY AND
PERHAPS WERH EXPAND THE
PROGRAMS IN TERMS OF THEIR REACH
EACH WITH THE SAME DOLLARS.
DEALING WITH CONGRESS AND THIS
MIGHT BE VERY POLITICAL, BUT
UNDERSTANDING THE ENVIRONMENT
THAT WE'RE IN.
UNDERSTAND THAT THIS PROGRAM IS
GOING TO GO UP TO CONGRESS AND
THEY HAVE TO SAY YEAH, WE'RE
GOING TO CUT IT OR NO WE'RE NOT.
KEEP IN MIND IF YOU LOOK AT THE
TEMPERAMENT OF CONGRESS, THEY'RE
INTO CUTTING, MEDICARE,
MEDICAID, ALL THOSE THINGS, VERY
VITAL PARTS OF WHAT I CALL
BUDGET ISSUES ARE ON THE TABLE
TO BE DISCUSSED, IF I DON'T
UNDERSTAND THE VALUE OF NIH, ALL
EVER US IT WILL BE SOMETHING
THAT WILL CAUSE A LOT OF THINGS
THAT WE HOLD VERY TRUE TO BE CUT
OUT OF THAT.
THE FACT THAT YOU'RE GOING TO
TAKE A LOOK INTERNALLY TO WHAT
CAN BE HOW YOU CAN BE MORE COST
EFFECT AND MORE EFFECTIVE IS
GOING TO BE VERY IMPORTANT FOR
CONGRESS MEN WHO ARE VERY BUNET
CONSCIOUS.
SO I JUST WANT TO BRING THIS UP
EMPLOY SO THIS BECOMES A GREAT
OPPORTUNITY TO WORK THROUGH HOW
SMRB COULD WORK IF YOU USE THIS
AS AN EXAMPLE.
NUMBER 1, NUMBER 2, 1 OF THE
THINGS THAT I BROUGHT TOO, AS
CO-CHAIR THE OUT OF THE BOX
THINKING.
EVEN TO THE POINT OF CHALLENGING
YOUR TERM RESEARCHERS.
VERY CLEARLY ACADEMIC AREAS ALSO
OTHER TYPES OF RESEARCHERS AND I
CHALLENGE THAT THERE ARE OTHER
RESEARCHERS OUT THERE.
SOME OF THE NEWEST RESEARCHERS
ARE THOSE PROVIDER SYSTEMS THAT
HAVE TAKEN ON RESPONSIBILITY FOR
POPULATIONS, YOU HEARD THE TERM
VALUE BASED CONTRACKING OR PAY
FOR PERFORMANCE SO THESE--THESE
SYSTEMS ARE NOW MONITORETARLY
RESPONSIBLE NOT ONLY FOR THE
COST OF THE CARE BUT ALSO FOR
THE QUALITY OF CARE THAT'S
BROUGHT TO THOSE POPULATIONS.
WHAT HELPS THEM IS BEING ABLE
TOW SEE THEIR POPULATION, HOW
THEY'RE DOING BUT ALSO KNOW HOW
OTHER POPULATIONS OUTSIDE OF
THEIR SYSTEM IS DOING.
ALL OF US CAN PROVIDE A LOT OF
INFORMATION OUTSIDE.
IT ALSO GIVES THEM VISIBILITY TO
THE POPULATION THAT IS GENERALLY
1 THAT IS NOT SEEN, IS THAT IS
YOUR DIVERSE UNDERREPRESENTEEPOR
IN COST OR HAVE A HIGHER
INCIDENCE OF CRON ILLNESSES, SO
THIS A DIFFERENT COHORT THAT YOU
HAVE NOT GONE AFTER IN THE PAST
WHO IS OUT THERE NOW AND WHO IS
DEFINITELY INTERESTED
APPROXIMATE GETTING ACCESS TO
THIS.
THE OTHER AREA THAT IS
INTERESTING IN PARTICIPANTING IN
THESE PROVIDER GROUPS
TO HELP RECRUITMENT INTO YOUR
PARTICIPANT GROUP BECAUSE AGAIN
IT ADDS TO THE NUMBERS THAT I
CAN TAKE A LOOK AT AND COMPARE
US INTO THEIR POPULATION, SO,
NOT ONLY IS IT IMPORTANT TO THE
PARTICIPANT TO SEE THEIR PROFILE
ABOUT IT WOULD BE HELPFULO
HAVE PARTICIPANTS WHO ARE
PROVIDER GROUPS WHO ARE LOOKING
AT THEIR POPULATIONS AND IT
DOESN'T NECESSARILY MEAN THAT
THE DAILY BASIS THEA HAS BEEN
TRANSFERRED OVER, THERE ARE
WAYS--I'M AN I.T. IDIOT SO I
SHOULDN'T BE TALKING ABOUT THIS
BUT THERE'S A WAY TO CONFIGURE
THE DATA SO THEY COULD SEE BOTH
EMPLOY SO I WANTED TO BRING THAT
UP.
THAT IS REAL IMPORTANT TO THINK
OUT OF THE BOX AT THIS POINT.
YOUR PARTNERS IN THIS, THIS IS
THE OPPORTUNITY TO REALLY SEEK
OUT PARTNERS, THE BUILD VERSUS
BUY, I WOULD TAKE THAT VERY,
VERY SERIOUSLY, PARTICULARLY
WHEN YOU TALK ABOUT I.T. BECAUSE
IT BECOMES SO ANTIQUATED SO
QUICKLY AND HAVING THE ABILITY
TO SEARCH THOSE THAT ARE OUT
THERE THAT ON THE CUTTING EDGE
CAN HELP THIS PROGRAM AS WELL AS
OTHERS WHO HAVE SIMILAR IT NEEDS
OR DATA MANIPULATION NEEDS WILL
BE VERY VALUABLE NOT ONLY TO ALL
OF US BUT THORS NIH IN GENERAL.
SO WITH THAT, I AM VERY, VERY
CONVINCED THAT THIS HOW WOULD
YOU SAY BRINGING UP THE SMRB AT
THIS TIME WAS NOT JUST
COINCIDENTAL, IT'S SOMETHING
THAT IS TELLING US THIS IS AN
OPPORTUNITY FOR US AS NIH AND
I'M SAYING US AS BEING INCLUDED
TO THINK DIFFERENTLY ABOUT HOW
YOU APPROACH THINGS.
AS I MENTIONED TO LAWRENCE,
THINK ABOUT WHO'S GOING TO BE ON
THAT SMRB ADVISORY BOARD BECAUSE
NIH IS GREAT IN TERMS OF
RESEARCH, ETHICS, TRUST AND ALL
OF THAT EMPLOY NOW IT'S TIME TO
BUILD THAT BUSINESS ACUMEN INTO
YOUR PROCESS WHICH WOULD MAKE IT
GO FORWARD.
THANK YOU FOR THE OPPORTUNITY
NTHANK
>> THANK YOU VERY MUCH.
CALL FOR A VOTE?
OHIMEORRY.
>> BECAUSE I THINK IT MAY BE
HELPFUL ALSO, WE ARE SPENDING A
LOT OF MONEY ON HEALTH
DISPARITIES, SO THERE IS THIS
TRAIN OVER HERE ON HEALTH
DISPARITIES AND THERE'S WERE,
THE HARDEST THING TO DO IS TO
GET A DIVERSE POPULATION OF
PEOPLE TOO ACTUALLY BE IN YOUR
STUDY SO I JUST WENT ONLINE, THE
HEALTH DISPARITIES THAT WE ARE
ALL FIGHTING AND TRYING TO DO
AND THE SYSTEMS THAT WERE TALKED
ABOUT AND THIS IS THE 1 PLACE
YOU CAN GET THIS DATA SO YOU
CAN'T GET IT ANY PLACE ELSE, WE
HAVE 1 PLACE WHERE YOU GET THE
DATA AND WE HAVE RARELY, I WOULD
THINK A COUNTRY LOOKING AT
HEALTH DISPARITIES AND THIS MAY
BE OUR MOMENT TO SAY, THIS IS
NOT JUST NECESSARY, THIS IS THE
WAY TO GO BECAUSE IN THE END WE
CAN SPEND MORE MONEY ON 2
PATHWAYS INSTEAD OF LESS MONEY
ON 1 PATHWAY.
>> WELL I THINK DR. ALTMAN IS ON
THE CALL AND JOSH IS OVER THERE,
SO I THINK THIS IS A GOOD WAY,
MORE DISCUSSION THIS EVENING AT
DINNER, RIGHT?
SO I WILL CALL FOR A SECOND TO
THE LAST VOTE TODAY.
SO I'M GOING TO CALL FOR A
MOTION FOR APPROVAL OF THE ALL
OF US REFLECTION AND ADVANCEMENT
WORKING GROUP REPORT.
>> SO MOVED.
>> THANK YOU.
SECOND.
>> SECOND.
>> THANK YOU ALL SO MUCH
DISCUSSION?
>> APPROVE THE REPORT.
YEAH, APPROVE THE REPORT.
NYEAH, MAYBE YOU SAID IT AND I
JUST MISSED IT.
SO WHAT HAPPENED AFTER WE,A
PROVE IT.
>> I GET TO DECIDE WHETHER OR
NOT I ACCEPT IT.
>> AFTER YOU ACCEPT IT THEN WHAT
HAPPENS NTHEN WE DECIDE HOW TO
IMPLEMENT AND RESPOND.
NSORRY, IS THERE--IS THERE A
CHANCE THE COMMON FUND WILL DO
MANAGE TO HELP WITH THIS?
>> THESE ARE DISCUSSIONS WE
WOULD HAVE TO HAVE--
>> IS THERE A CHANCE THE COMMON
FUND COULD HELP NPOSSIBLELY.
>> OKAY.
>> ALL RIGHT THAT WAS
DISCUSSION, WE STILL HAVE--WE
STILL HAVE THE MOTION ON THE
TABLE.
IT WAS SECONDED SO NOW IF THERE
IS MOW MORE DISCUSSION, I WILL
ASK ALL THOSE IN FAVOR SAY AYE.
>> AYE.
>> THANK YOU.
>> ALL THOSE AGAINST SAY NAY.
>> [INDISCERNIBLE].
[LAUGHTER]
>> ALL RIGHT, THERE WAS NO NAY.
>> [LAUGHTER]
>> ANY ABSTENTIONS?
GREAT.
THANK YOU VERY MUCH.
WE WILL HAVE 1 MORE THING TO DO
AFTER THIS 1.
THIS IS APPROVED.
THANK YOU RUSS.
>> THANK YOU SO MUCH, WELL I
WILL JUST SAY, JUST A FEW WORDS
BECAUSE I WILL IMIF MY RESPONSE
AND SORT OF BUILDING OFF OF
KEVIN'S QUESTION, AS YOU'VE
HEARD TODAY IN THE LAST 2
PRESENTATIONS OBVIOUSLY, ALL OF
US HAS MADE INCREDIBLE STRIDES
OVER ITS HISTORY, AND IN
DEVELOPING ITSELF AS A PROGRAM
AS WELL AS GETTING US TO WHERE
WE ARE WITH THE PROGRAM TODAY
INCLUDING ITS UPCOMING DATA
RELEASE AND IT'S GOT DATA FROM
OVER 633,000 PARTICIPANTS AS YOU
HEARD JOSH SAY 12,000
RESEARCHERS THAT WE HAVE
UTILIZING THOSE DATA, ABILITY TO
RETURN GENETIC HEALTH RESULTS TO
MORE THAN 150,000 PARTIC PLAN TO
ANALYZE BY AGES AND THE
REMARKABLE DIVERSITY OF THE
PARTICIPANTS IN THE PROGRAM
WHICH WE JUST DISCUSSED HOW
VALUABLE THAT IS, AND WHAT THE
OPPORTUNITY WE HAVE THERE.
SO, YOU KNOW I JUST WANT TO
THANK ALL OF YOU ALL FOR
HIGHLIGHTING THIS IMPORTANT, AS
THIS PROGRAM CONTINUES TO GROW,
PRESUMABLY TO THE 1 MILLION
MARK, WHICH I KNOW WE ALSO
TALKED AND MOST NOTABLY I
THINK OUR GOAL OF TRYING TO
ENGAGE AND ENROLL CHILDREN
REALLY IN THE PROCESS, I MEAN
THEY PILOTED IT, BUT WE
ULTIMATELY WOULD LIKE TO BUILD
THAT PROGRAM COMPONENT OUT.
FINANCIAL, SUSTAINABILITY
EFFORTS LIKE REDUCING TECHNICAL
PLATFORM COSTS AND EXPLORING
COMMERCIAL ACCESS AND PUBLIC,
PRIVATE PARTNERSHIPS THESE ARE
ALL THINGS THAT BUILD UP AND
UPON THE COMMENTS THAT ARE GOING
TO BE CRITICAL TO THE PROGRAM.
JUST IN GENERAL TO REACH THE
GOAL BUT ALSO IMIVEN THE PERIOD
WE'RE IN WITH THE BUDGET.
BUT YOU KNOW BECAUSE OF THAT, WE
HAVE TO BE REALLY CLEAR EYED
ABOUT WHAT OUR PATH FORWARD IS
AND JOSH SHOWED THAT GRAPH AND
WE ALL AT LEAST INTERNALLY AT
NIH SEEN THAT A NUMBER OF TIMES.
AND IT REREPRESENTS WHAT COULD
AMOUNT TO A SIGNIFICANT FUNDING
CLIFF FOR ALL OF US, VERY, VERY
SIGNIFICANT FUBDING CLIFF.
AS THE REPORT DID SUGGEST
WITHOUT ADEQUATE PREDICTABLE
STABLE FUNDING FOR THIS PROGRAM
WE DO RISK STALLING THIS
TRANSFORMATIVE PROGRAM.
AND PAUSING POTENTIALLY
ENROLLMENT JUST IN GENERAL AND
POTENTIALLY GETTING TO A POINT
WHERE WE'RE NEVER REALLY ABLE TO
LAUNCH THE PROGRAM TO ENROLL
CHILDREN.
AND I THINK THAT WOULD BE A HUGE
MISSED OPPORTUNITY AND I KNOW
THAT AT LEAST SOME OF YOU I
THINK HOPEFULLY AGREE.
IT COULD ALSO JEOPARDIZE OUR
ABILITY TO RETURN RESULTS TO 10S
OF THOUSANDS OF PEOPLE WHO ARE
STILL WAITING EMPLOY I WAS JUST
HOME THIS PAST WEEKEND AND WAS
TALKING TO A COUPLE OF MY
FRIENDS AT BREAKFAST AT BRUNCH,
WE WERE AT AND MY MOM AND MY
GRANDMA WERE THERE AND SOMEHOW
WE GOT ON THE CONVERSATION OF
ALL OF US, I DON'T EVEN REMEMBER
HOW, AND MY MOM AND MY
GRANDMOTHER WERE JUST TALKING
ABOUT HOW THEY HAVE JUST LOVED
BEING ENROL IN THIS PROGRAM,
AND YOU KNOW SHARING THE LINK
WITH MY FRIENDS TO ENROLL AND I
THINK, REALLY, THERE'S A LOT OF
INTEREST AND VARIOUS DIFFERENT
COMMUNITIES ACROSS THE COUNTRY
WHO HAVE THIS OPPORTUNITY TO GET
SOME REALLY VALUABLE DATA FOR
THEMSELVES BUT ALSO BECAUSE THEY
FEEL LIKE THEY'RE CONTRIBUTING
TO SCIENCE AND BETTERING
THEMSELVES.
SO THE OPPORTUNITIES WE WOULD
MISS ARE POTENT KRALLY REALLY
IMPACTFUL AND OF COURSE, ALL OF
THIS IS HAPPENING AT I THINK AS
A TIME TAKEN--THEY WE'RE SEEING
THAT THE PROGRAM IS REALLY
STARTING TO HIT ITS STRIDE, IT
HAS A LOT OF OPPORTUNITY THAT
YOU KNOW WE--I THINK WE CAN ALL
ENVISION COMING DOWN THE PIKE.
SO YOU KNOW WE REALLY NEED TO
CONTINUE BUILDING THIS MOMENTUM,
CONTINUING MOMENTUM BOTH FOR THE
SCIENTIFIC OPPORTUNITIES THAT IT
CREATES BUT ALSO THE LIVES THAT
IT POTENTIALLY STANDS TO IMPROVE
AND THE MORE WE DEVELOP ABOUT
THE PROGRAM, THE MORE WE CAN SEE
THAT COMING TO FRANCIS COLLINS
CISION, SO SO TO GET TO KEVINS
QUESTION BETWEEN WHAT HAPPENS
NEXT AND WHERE WE STAND, YOU
HAVE A SENSE OF THAT.
SO I ALONG WITH COUNCIL WILL
ACCEPT THE RECOMMENDATIONS
OUTLINED IN THIS REPORT AND WE
WILL WORK WITH THE TEAM AT ALL
OF US TO FIGURE OUT HOW WE CAN
IMPLEMENT THEM TO THE BEST OF
OUR ABILITY GIVEN THE
CIRCUMSTANCES WE'RE UNDER.
I WANT TO THANK RUSS, RHONDA AND
THE WHOLE TEAM WHO CONTRIBUTED
TO THE REPORT AND THANK THE ALL
OF US FOLKS, RACHEL INCLUDED US
HERE WHO HELPED TO DRAFT THE
REPORT AS WELL.
>> RACHEL PETERSON WAS
ABSOLUTELY GREAT AND SO WAS
HANNAH COLEMAN SO THANKS IF ARE
SAYING THAT.
>> GREAT, GREAT.
THANKS SO MUCH AGAIN FOR ALL OF
EVERYONE'S WORK ON THIS EFFORT.
IT'S BEEN REALLY INFORMATIVE.
OKAY, SO, NOW WE'RE GOING TO
SHIFT TO OUR VERY LAST AND SHORT
SEGMENT BECAUSE I DO KNOW WE'RE
A COUPLE MINUTES OVER.
BUT WE HAVE 1 MORE THING WE NEED
TO COVER WHICH IS OUR ANNUAL
REVIEW OF OUR COUNCIL OF COUNCIL
OPERATING PROCEDURES, I BE THIS
WAS THE MOST EXCITING THING THE
OF THE DAY.
>> I WILL JUST MOVE FOR APPROVAL
OF THE LACK OF CHANGES IN THE
RULES IF WE LIVED UNDER THEM
THIS LONG, WE CAN LIVE UNDER
THEM ANOTHER YEAR.
>> WELL I MEAN HOW DO YOU KOOM
PETE WITH THAT.
HOW ABOUT THEN, OKAY, IT'S MOVED
AND IT'S SECONDED BEFORE I SAID
IT.
OF ALL THOSE IN FAVOR SAY AYE.
>> AYE.
>> ALL THOSE OPPOSE SAY NAY.
>> NOBODY.
ALLHT.
ANY ABSTENTIONS?
I ASSUME, THANK YOU, THANK YOU
ZOOM PARTICIPANTS.
>> SO BEFORE EVERYONE STARTS
PACKING UP AND HEADING OUT JUST
A COUPLE LITTLE LOGISTICAL
THINGS, FIRST, THANKS SO MUCH
FOR THE GREAT DISCUSSION TODAY.
THIS HAS REALLY, REALLY HELPFUL
TO US, AND WE WILL HOPE TO
BETTER THE PROGRAMS.
WE'RE GOING TO RESUME AT 9 AMSO
JUST A REMINDER FOR THOSE
ONLINE.