>>HI, EVERYBODY.
TO SEE EVERYBODY AGAIN FOR DAY TWO
WE HAVE A FULLY-PACKED AGENDA
TODAY ALTHOUGH WE WILL BE ENDING
BY 2:30.
NO LATER.
BECAUSE OF THE WHOLE SERIES OF
HARD STOPS THAT PEOPLE HAVE.
THE FIRST ITEM THIS MORNING IS
IS THE HeLA GENOME DATA ACCESS
WORKING GROUP AND I JUST WANTED
TO TAKE A MOMENT TO REMIND THE
ADVISORY COMMITTEE AND THOSE
WATCHING ABOUT HOW IMPORTANT
THIS WORK IS.
THIS WORKING GROUP REPRESENTS
APP AGREEMENT BETWEEN THE NIH
AND THE DESCEND APARTMENTS OF DA
LACKS WHO HAD HER BIOPSY TISSUE
USED FOR THE CELL LINE THE
HeLA CELL LINE AND THAT HAS
ENABLED BY OWE MEDICAL
RESEARCHERS ACROSS THE WORLD TO
DO MANY, MANY IMPORTANT THINGS.
ALLOWS A FORMAL ACCESS PROCESS
TO THE GENOME SEQUENCE DATA
WHILE IT RESPECTING THE PROVE
REASONSES OF THE LACKS FAMILY.
SO THIS IS IMPORTANT.
AS PART OF THE AGREEMENT,
MEMBERS OF THE FAMILY, ALONG
WITH SCIENTISTS, PHYSICIANS AND
BIOETHISTS EVALUATE INVESTIGATOR
PROPOSALS WHO REQUEST ACCESS TO
HeLA CELL LINES SEQUENCE DATA.
THE WORKING GROUP FINDINGS ARE
REPORTED TO THE ACD AND THE ACD
MAKES RECOMMENDATIONS THROUGH
THE NIH DIRECTOR WILL WHETHER A
REQUEST SHOULD BE APPROVED OR
DISAPPROVED AND THERE THEN AS
DECISION MADE ABOUT WHETHER
ACCESS TO THE DATA SHOULD BE
GRANTED.
WE'RE REALLY GRATEFUL AT NIH FOR
THIS REMARKABLE FAMILY'S
CONTINUED SUPPORT OF BIOMEDICAL
RESEARCH AND FOR THEIR
WILLINGNESS TO COLLABORATE WITH
US ON THIS VERY IMPORTANT ISSUE.
AND SO, WE'LL NOW HEAR FROM THE
HeLA WORKING GROUP CO-CHAIRS,
Dr. GARTH GRAHAM AND LYRIC
JORGENSON WHO WILL REPORT ON
THIS TIME OF ONE REQUEST FOR ACD
CONSIDERATIONS.
AND SO, I DON'T KNOW WHO WILL
LEAD OFF.
>>WE'LL HAVE Dr. GRAHAM AS
THE NEWEST CO-CHAIR.
TURNING TO YOU, GARTH.
>>Dr. Garth Graham: THANK YOU.
CAN YOU HEAR ME OK?
>>JUST FINE.
>>GOOD, SO, I'M GARTH GRAHAM
AND I SERVE ALONGSIDE LYRIC TO
CO-CHAIR THE HeLA GENOME DATA
ACCESS WORKING GROUP AND TODAY
WE'LL BE REPORTING ALL THE
WORKING GROUPS EVALUATION OF A
RESEARCH PROPOSAL TO ACCESS --
CAN I GET OUR SLIDES UP.
THANK YOU.
AND SO, WE'LL GO TO THE NEXT
SLIDE.
SO, THE HeLA DATA USE
AGREEMENT IS A RESULT OF THE NIH
FAMILY AGREEMENT AND IT EXPECTED
NIH FUNDED INVESTIGATORS WHO
GENERATOR HUGHES HeLA GENOME
SEQUENCE DATA THROUGH A PATHWAY
USING THE DATA OF GENOTYPE AND
PHENOTYPE AND OTHERS ARE URGED
TO DO THE SAME AND ACCESS THIS
INVESTIGATORS AGREED TO THREE
THINGS.
ABIDE BY TERMS SET FOURTH IN THE
HeLA GENOME USE AGREEMENT AND
TO ACKNOWLEDGE THE LACKS FAMILY
FOR THEIR CONTRIBUTIONS AND
PUBLICATIONS RESULTING THE
GENERATION OR USE OF WHOLE
GENOME SEQUENCE DATA FROM THE
HeLA DATA AND THE GENOME
SEQUENCE DATA GENERATED FROM
HeLA CELLS INTO THE DATABASE
OF GENOTYPE AND PHENOTYPE.
THE WORKING GROUP COP CYSTS OF
SCIENTISTS, PHYSICIANS, BIO ETH
A SIS AND THE DEACCEPTED ANTS OF
THE LACKS FAMILY.
AND WE HAVE DAVID LACKS JUNIOR,
HER GRANDDAUGHTER AND HER GREAT
GRAND DAUGHTER ON THE WORKING
GROUP AS WELL.
SO, THE HeLA DATA USE
AGREEMENT ADVISES THE
INVESTIGATOR TO ADDRESS THESE
CRITERIA IN THEIR RESEARCH USE
STATEMENT, IN ADDITION TO THIS
OBJECTIVES, DESIGNED AND ALLOWS
US TIME OF THE PROPOSED RESEARCH
AND PROVIDE A STATEMENT
EXPLAINING WHY EXACTLY THE
HeLA CELL DENOAM IS VALUE
BEFORE THE PROPOSED RESEARCH.
PERHAPS PLANS LIKE IP OR PRODUCE
IS NOT USED TO MAKE THE
EVALUATION THOUGH WE OBTAIN THIS
INFORMATION PRIMARILY FOR
DISCLOSURE PURPOSES.
AND THE EVALUATION REALLY DOES
NOT I AM CONCLUDE ANY EVALUATION
OF THE ACTUAL SCIENTIFIC MERITS
OF THE RESEARCH.
SO, THIS SLIDE IS A QUICK
SNAPSHOT OF THE STATISTICS OF
REQUEST, EVALUATED BY THE
WORKING GROUP AND APPROVED BY
THE NIH DIRECTOR.
THERE ARE INSTANCES WHEN REPORTS
HAVE BEEN DISAPPROVED AND
REQUESTS WILL BE DISAPPROVED,
SPECIFICALLY IF THEY DON'T MEET
EXPECTATIONS DESCRIBED IN THE
HeLA DATA USE AGREEMENT THAT I
A ALLUDED TO EARLIER.
TODAY WE'LL REREPORT THE
EVALUATION OF ONE REQUEST MADE.
SO, HAD HAD REQUEST WAS FROM THE
UNIVERSITY OF KANSAS AND THE
ACCESS TO THE HeLA CELL LINE
SEQUENCE DATA TO INVESTIGATE HOW
THE LOCATION OF RNA BINDING
PROTEINS INFLUENCE BIOLOGIC
PROCESSES LIKE INFLAMMATION.
AND THE WORKING GROUP EVALUATED
THIS REQUEST AND FOUND THE
REQUEST FROM THE UNIVERSITY OF
KANSAS TO BE CONSISTENT WITH THE
HeLA DATA USE AGREEMENT AND
WITH THAT I'M GOING TO TURN IT
BACK OVER TO LARRY AND ACD FOR
THE DISCUSSION.
>>THANK YOU, VERY MUCH.
THAT WAS VERY CLEAR AND I
APPRECIATE IT.
ARE THERE ANY COMMENTS OR
QUESTIONS FROM THE ACD MEMBERS?
EITHER HERE IN THE ROOM OR ON
THE VIRTUAL -- CAN WE GO BACK TO
SEEING EVERYBODY.
WHY IF ANYBODY ON ZOOM IS
I DON'T KNOW IF ANYBODY ON ZOOM
RAISING THEIR HAND.
VERY GOOD.
THANK YOU.
SO, WHAT I THEN NEED IS A MOTION
TO ACCEPT THE REPORT AS
DELIVERED.
>>I MOVE TO ACCEPT THE REPORT
AS DELIVERED.
>>SECOND.
>>THANK YOU.
>>ANY FURTHER DISCUSSION?
OK.
ALL IN AGREEMENT SAY AYE.
>>AYE.
>>ANY OPPOSED A NAY.
ARE THERE ANY ABSTENTIONS?
IT THANK YOU.
MOTION CARRIES WITH UNANIMOUS
APPROVAL AND I WILL TAKE THAT
MOTION UNDER ADVISEMENT AND MAKE
A DECISION IN THE VERY NEAR
FUTURE.
SO THANK YOU FOR THE GOOD WORK
OF THE COMMITTEE AND THANK YOU
ACD FOR YOUR APPROVAL.
I'M GOING TO TURN IT TO TARA TO
LEAD US THROUGH THE REST OF THE
MORNING.
>>GREAT, THANK YOU, LARRY.
SO, WE'LL VENTURE INTO THE NEXT
SESSION, THE TOPIC PROVIDING
INFORMATION ON UP WITH OF THE
BIG INITIATIVES THAT WE HAVE IN
RESPONSE TO THE COVID-19
PANDEMIC AND THAT'S OUR RECOVER
INITIATIVE AND THAT HAVE LOOKING
AT TRYING TO FIGURE OUT VARIOUS
FEATURES OF WHAT KNOWN AS PASC.
POST ACUTE SEE QUE SEQUELAE OF
SARS-CoV-2.
>>GOOD MORNING, THANK YOU FOR
THE OPPORTUNITY.
I'M STANDING HERE AS A CO-CHAIR
AS YOU CAN SEE OPT SLI ON THE ST
THE CHARGERS INCLUDE TONY FAUCI
AND SENIOR LEADERS ACROSS THE
NIH AS PART OF THIS TRANS NIH
EFFORT AND OBVIOUSLY I DREW THE
SHORT STRAW TODAY O I TODAY SOE
HOPPER OF TELLING WHERE YOU ARE
WE ARE IN THE CURRENT STATE.
SO FIRST, THE CHALLENGE THAT
WE'VE BEEN GIVEN AS PART OF THIS
RECOVERY INITIATIVE, IS TO
RECOGNIZE THAT THERE HAVE BEEN
THESE POST ACUTE SEQUELAE COVID
THAT PROBABLY FOLLOWS IN A
PATTERN CONSISTENT WITH OTHER
POST-VIRAL SYNDROMES BUT STILL
REPRESENTS A DISTINCTIVE
MULTI-SYSTEM DISORDER THAT WE
NEED TO CHARACTERIZE BECAUSE
THERE'S VERY LITTLE KNOWN ABOUT
IT.
IT'S PART OF IT IT IS IS
DAUNTING CHARACTERISTICS IS THE
BREADTH OF ITS INVOLVEMENT AND
THE VARIETY OF SYMPTOMS THAT
HAVE BEEN ASSOCIATED WITH IT
THAT APPEAR THAT EFFECT EVERY
PHYSICIANS ARE AWARE OF AND
EFFECT EVERY ORGANIZE ON AND
BODY SYSTEM SO THAT REPRESENTS A
PARTICULAR CHALLENGE AS THE
DATES NECESSITATE A
CROSS-DISCIPLINARY APPROACH THAT
SOMETIMES IS DIFFICULT ACROSS
INSTITUTES ACROSS CLINICAL
DISCIPLINES AND RESEARCH REMAINS
AND IT'S PART OF THE RECOGNIZING
THE COMPLEXITY OF ADDRESSING OF
THIS AND DOING IT WITH THE SENSE
OF URGENCY AS DEMANDED BY THE
RELIEF OF SUFFERING FROM THE
PATIENTS AFFLICTED WITH THIS
REHABILITATING DISORDER.
TOWARD THAT END, THE GOALS ARE
TO RAPIDLY -- CAN YOU GO BACK
ONE?
THE GOAL IS TO RAPIDLY
ACCELERATE AND ADVANCE OUR
UNDERSTANDING OF PA IASC OF
PREDICTING, DIAGNOSING, TREATING
AND PREVENTING THIS DISORDER,
ULTIMATELY AND SEVERAL SPECIFIC
AIMS, ONE TO UNDERSTAND THAT
CLINICAL SPECTRUM, THAT
TRAJECTORY OF RECOVERY IN
ADDITION, STARTING TO UNPACK
THOSE RISK FACTORS AND THE
PREVALENCE OF THIS DISORDER AS
WELL AS POTENTIALLY SOME OF THE
SUB-PHENOTYPES AS PART OF IT,
ULTIMATELY GETTING DEEPER INTO
UNDERSTANDING ITS PATHOGENESIS
AND HAVING A MECHANIC NICE TICK
AND IT'S MORE THAN ONE ENTITY
AND THERE MAY BE MULTIPLE
BIOLOGICAL PATHWAYS THAT
CONTRIBUTE TO IT'S HETEROGENEITY
AND THAT ULTIMATELY, THAT
FURTHER UNDERSTANDING SHOULD
HELP US TO INFORM INTERVENTIONS
AS WE DEVELOP MORE EFFECTIVE
TREATMENTS AND PREVENTION
STRATEGIES.
APPROXIMATE ADDITION TO THESE
SORT OF AIMS, WE HAVE EP DO YOUD
TO GUIDING PRINCIPLES.
ONE FROM THE VERY INCEPTION WAS
TO APPRECIATE VALUE, VALIDATE,
THE SUFFERING A PATIENTS WOULD
HAVE BEEN UNDER IN THE PAST.
SINCE EARLY DAYS OF THE PANDEMIC
AND TO IENSURE PATIENTS ARE ACTE
PARTICIPANTS AND PARTNERS
EMBEDDED WITHIN THE INITIATIVE
AT EVERY LEVEL INCLUDING AT THE
MOST, THE HIGHEST LEVELS OF
EXECUTIVE DECISION-MAKING AND SO
WE STRIVE TO QUITE FRANKLY RAISE
THE BARF PATIENTS-CENTEREDNESS
AND PATIENT ENGAGEMENT FOR AN
NIH STUDY AND WE'RE ENDEAVORING
TO ENSURE THAT WE'RE HOPEFULLY
CREATING A MODEL THAT WE CAN
CONTINUE TO BUILD UPON,
RECOGNIZING THAT THIS IS A
RECOGNIZE AND THAT WE'RE DOING
SOME THINGS THAT DON'T HAVE A
LOT OF PRECEDENCE AND WE'LL
LEARN IN THINGS ALONG THE WAY
AND THERE ARE BUMPS ALONG THE
WAY IN THAT PROCESS BUT WE'RE
COMMITTED TO IT AS A
PARTNERSHIP.
SIMILARLY, A KEY GUIDING
PRINCIPLE, IS THAT WE'RE DOING
SOMETHING AT SCALE AND
THEREFORE, SHOULD BE REFLECT
TIVE OF THE POPULATIONS AND
COMMUNITIES THAT ARE EFFECTED OF
COVID HAD ON COMMUNITIES.
O WE'RE COMMITTED AS A GUIDING
PRINCIPLE TO INCLUSIVE
PARTICIPATION AND A DIVERSITY
ACROSS MULTIPLE DIMENSIONS.
OF IN ADDITION, WE ARE
ENCOURAGED BY SOME OF THE
EXPERIENCES AND LESSONS LEARNED
FROM OUR APPROACHES TO ACUTE
COVID IN WHICH WE'VE TRIED TO
ADAPT PLATFORMS, OFTEN
LEVERAGING EXISTING ASSETS IN
ORDER TO HOPE ACCELERATE THIS
WHOLE PROCESS AND WE WANT TO BE
SURE THAT THE ADAPTIVE PLATFORM
APPROACH FACILITATES THE USE OF
COMMON DATA ELEMENTS, COMMON
APPROACHES, SUCH THAT WE'RE
CREATING A COLLECTIVE AND A
CONSORTIUM THAT HOPEFULLY CAN
ROW IN A SIMILAR DIRECTION AS
OPPOSED MA SMALL PROJECTS THAT
WOULD BE HARD TO KNIT TOGETHER
AND GET COHERENT UNDERSTANDING
TO FILL THE AIMS.
SO PART OF THAT AGAIN, IS THAT
CONVENING OF THE COLLECTIVE
CONSORTIUM TO WORK TOGETHER.
AND FINALLY, WE'RE NOT TREATING
THIS LIKE A FIVE YEAR RO1 SO
WE'VE LEVERAGED THE OTHER
TRANSACTION AUTHORITY
CAPABILITIES OF FLEXIBILITY
FUNDING MECHANISMS TO ENABLE US
TO BE MORE ADAPTIVE SUCH THAT
ALLOWED THE IDEAS AND THOUGHTS
AND PREDICTIONS THAT WE HAD IN
YEAR ONE AS WE LEARNED MORE
ABOUT THIS OF SYNDROME AND WHAT
IS WORKING AND WHAT'S NOT.
WE MAY NEED TO PIVOT AND CHANGE
IN YEAR TWO AND YEAR THREE.
SO WE INITIATED IT IT LAUNCH
WITH THAT NOTION OF BEING
ADAPTIVE AND THAT'S SOMETIMES A
CHALLENGE IN THE RESEARCH REALM
AND IN OUR NIH FUNDING PROGRAMS
USUALLY BUT WE'RE COMMITTED TO
DOING THAT AND RECOVER.
NEXT SLIDE, PLEASE.
TOWARD THAT END, I WANT TO CITE
THE NOTION THIS IS ALL PART OF A
OF WHOLE OF GOVERNMENT APPROACH
THAT HAS BEEN CAPTURED BOTH IN
THE EXECUTIVE STATEMENTS AS WELL
AS WHITE HOUSE INITIATIVES THAT
HAD BEEN LED IN PART BY THE HHS
AND ASSIST APARTMENT SECRETARY T
WITH A ACTION AROUND LONG COVID
THAT BRINGS ENTITIES WITH ASSETS
IN THIS SPACE AND VERY
COMPLIMENTARY WAY AND YOU CAN
SEE ON THIS SLIDE, A NUMBER OF
THE KEY AREAS, I AND WON'T DWELL
ON THAT BUT IT'S ATTEMPTING TO
TAKE A COMPREHENSIVE APPROACH TO
LONG COVID THAT SPANS THE NIH
PART WHICH THE RESEARCH AND
UNDERSTANDING OF PAST AS WELL AS
ITS TREATMENT AND DIAGNOSIS BUT
ALSO RECOGNIZING THAT IT HAS
IMPLICATIONS BECAUSE MILLIONS OF
AMERICANS MAY HAVE THIS AND
REIMBURSEMENT AND MANY OTHER
ELEMENTS THAT THESE AGENCIES
DEAL WITH AND THERE'S A DESIRE
TO HAVE THAT COHERENT APPROACH
THAT'S COMPLIMENTARY.
TOWARD THAT END, IN KEEPING WITH
THOSE GUIDING PRINCIPLES, WE'VE
ENDEAVORED T TO ENSURE PATIENTS
ARE MEANINGFULLY ENGAGED
THROUGHOUT RECOVER AND WOVEN
INTO ALMOST EVERY ELEMENT OF
RECOVER AND IN DEED, TOWARD THAT
END, WE ESTABLISHED WITHIN
RECOVER A CENTRAL ROLE FOR
NATIONAL COMMUNITY ENGAGEMENT
GROUP WHICH FUNCTIONS AS PART OF
THE GOVERNANCE STRUCTURE TO
PROVIDE H THAT PERSPECTIVE,
SIMILARLY, THERE'S MEANINGFUL
PATIENT ENGAGEMENT THROUGHOUT
THE STEERING COMMITTEE AND
EXECUTIVE COMMITTEE IN DEED
THEY'RE PART OF WRITING THE
PROTOCOL, DEVELOPING THE
PROTOCOLS AND HELPING WITH THE
PRIORITIZATION OF INTERVENTIONS
AND A VARIETY OF WAYS AND THIS
IS INVOLVED SURVEYS, FOCUS
GROUPS, WORKING GROUPS, AND AS I
SAY, THROUGHOUT AND IT'S
INVOLVED LITERALLY AS YOU SEE
THERE THOUSANDS OF INTERACTIONS
AND INDIVIDUALS AT EVERY LEVEL
BOTH LOCAL AS WELL AS CENTRALLY
SO WE'RE COMMITTED TO THIS AND
ENSURING THAT THIS ALSO A WORK
IN PROGRESS.
MANY NIH INVESTIGATORS DON'T
TYPICALLY WORK SHOULDER BY
SHOULDER WITH PATIENTS WHO HAVE
A VOICE AT THE TABLE SO THIS IS
A LEARNING PROCESS OF AND YOU
DEGREES YOU MAY HAVE IN YOUR AND
SO THIS IS IMPORTANT ELEMENT OF
THE PROGRAM.
NEXT SLIDE, PLEASE.
SO SIMILARLY, WE KNOW THAT ACUTE
COVID DISPROPORTIONATELY
EFFECTED CERTAIN COMMUNITIES AND
ACTUALLY PRELIMINARY DATA FROM
RECOVER THAT'S PLAYING OUT WITH
REGARD TO PASTOR LONG COVID AS
WELL SO IN ANTICIPATION TO THAT
WE NIEHS IF KNEW IF WE WERE GOIO
CREATE A STUDY WE WANTED TO BE
SURE IT REFLECTED AMERICA BUT
REFLECTED THOSE
DISPROPORTIONATELY EFFECTED BY
COVID AND IN PARTICULAR, WITH
LONG COVID, THIS PRESENTS
ADDITIONAL CHALLENGES BECAUSE
QUITE FRANKLY, A NUMBER OF THE
ON-LINE SURVEYS OFTEN HAVE
VICTIMS OR WHITE OF EUROPEAN
ANCESTRY IN THE 80% TO 85%
RANGE.
IT MAY NOT BE SURPRISING, IT'S
OFTEN HIGHLY EDUCATED, OFTEN
WHITE, AND OFTEN FEMALE AND
THERE'S A SKEWING OF THOSE
SAMPLE SETS RELATED O THAT.
AGAIN, RECOGNIZING THAT FEMALE
SEX MAY BE A PRE DISPOSING
FACTOR BUT WE WANT TO MAKE SURE
WE'RE CATWE'RE CAPTURING THE VAE
OF POPULATIONS SO WE'RE CLOSE TO
A TARGET OF MORE LIKE 55% WHITE
AND 45% NON.
OUR AREA OF SHORT FALLS SO FAR
HAS BEEN OUR HISPANIC
POPULATION, LATINO POPULATION IN
PART RELATED TO A DELAYED
ROLLOUT OF OUR TRANSLATION AND
OF SOME OF THE RESEARCH
ELEMENTS.
WE'RE DOING WELL IN THE OTHER
POPULATIONS, AFRICAN AMERICAN,
AMERICAN INDIANS, ASIANS, NATIVE
HAWAIIAN, PACIFIC ISLANDERS,
WE'RE ALMOST EXCEEDING
EXPECTATIONS RELATED TO A
SPECIFIC ROLLOUT IN
INTENTIONALITY AND LEVERAGING
PLATFORMS LIKE THE COMMUNITY
ENGAGE ALLIANCE OR SEEL THAT IS
EFFCEAL RAISINGAWARENESS AND ITD
INTO RECOVER AND ANTICIPATION OF
THE NEED FOR T FOR THAT ENGAGEMD
IS BEARING FRUIT.
THESE ARE JUST A BROAD
HIGH-LEVEL VIEW OF ALL THE COM
PPHONEANTS.
THIS IS A COMPLEX PLATFORM
RELATED TO THE NEED, I BELIEVE,
TO BE CO COMPREHENSIVE AND FIT R
PURPOSE FOR CERTAIN TYPES OF
QUESTIONS DEPTH OR SCALE OR
SAMPLING FRAME OR IN EVALUATION
AND THE TYPE OF INFORMATION THAT
THEY CAN BRING TO BEAR TO EXTEND
THAT UNDERSTANDING OF BRED
STROKES THERE ARE OBSERVATION
VOCAOBSERVATIONALCOHORTS THAT CE
MILLIONS WITH THOSE SORTS OF
DATASETS.
SIMILARLY REV ENROLLING CLINICAL
COHORTS THAT CAN BE AMEEN ABLE
TO CASE CONTROL DESIGNS OR
EFFORTS IN THAT SPACE AS WELL AS
OF LONGITUDINAL AS THEY ARE
ACUTELY EFFECTED EX WHETHER THEY
DEVELOP PAST OR NOT AS WELL AS
COMMUNITY-BASED COHORTS SUCH AS
THE HEART STUDY WHICH GIVES US A
SENSE WITHOUT A PARTICULAR NEW
SAMPLING ASCERTAINMENT WE CAN
SEE WITH THOSE COHORTS LITERALLY
FOLKS IN ALL 50 STATES AND HOW
THEY'RE RESPONDING TO THAT
EXPOSURE AND MORE IMPORTANTLY,
THOSE FOLKS THAT WE HAVE A
TREMENDOUS AMOUNT OF
LONGITUDINAL PRE-COVID DATA ON
AND FOR WHOM WE'RE COMMITTED TO
FOLLOWING THEM TO THE STAGE OF
MORTALITY FOR ANOTHER 10 TO 20
YEARS AND SO, CAPTURING THAT
INFORMATION AS WELL AND THEN THE
OTHER BUCKET, PATHO BIOLOGY, WE
CLEARLY ARE POISED WITH THE BIO
REPOSITORY AND BIOSPECIMEN TO A
RICH SOURCE FOR BIOMARKER
DISCOVERY AND PATH OWE AGAIN I C
STUDIES AND AS WE UNDERSTAND WE
WERE ABLE TO PREDICT, DIAGNOSE,
AND UNDERSTAND A PATHWAY.
WE SHOULD BE POISE TO INTERVENES
IN CLINICAL TRIALS.
SO LET ME TOUCH ON THE
ELECTRONIC HEALTH COHORTS.
WE INDICATED IS A COMPLIMENTARY
STRAND OF INFORMATION AND WE
KNEW FROM THE VERY BEGINNING IT
WAS LIKELY TO YIELD THE QUICKEST
SET OF FINDINGS AND
UNDERSTANDINGS GIVEN THE REPID
TEE YOU CAN CREATE THE COHORTS
AND THAT'S BEEN BORN TRUE.
IT WAS -- WE DON'T THINK THERE
WAS A LOT OF PRECEDENT FOR BUT
THERE WAS AN OPPORTUNITY THAT
THESE AND THERE'S A COVID
COLLABORATIVE AS WELL AS ALL OF
US THAT ALL OF YOU ARE FAMILIAR
WITH AND WE SEE A GREAT
OPPORTUNITY TO DO RESEARCH THAT
LEVERAGES ALL OF THEM TO PCORNET
HAS A ADULT AND PEDIATRIC
COMPONENT THEY CAN PROVIDE
COMPLIMENTARY INFORMATION AND
SYNERGIES BY O BY ENSURING WE LK
ACROSS THESE EHR PLATFORMS.
IT'S SOMETHING THAT WE BELIEVE
ADDS VALUE NOT ONLY TO RECOVER
BUT BEYOND.
AN EARLY THING THEY'VE DONE IS
TO CREATE USING MACHINE LEARNING
A PHENOTYPE OF THE ABILITY O TOY
THAT STILL NEEDS CROSS
VALIDATION AND IN DEED THIS
SLIDE SHOWS YOU ONE OF THE
EFFORTS IN THAT REGARD OF TAKING
THE M.P. LEANING ALGORITHM
DEVELOPED IN 3D FOR PASC THAT
WAS MORE EFFECTIVE THAN THE
CURRENT ICB CODE FOR PA IS SC
AND TO CROSS VALIDATE IT IT IN
ALL OF US AND IN DEED, HAS
REVEALED SOME INTERESTING
FINDINGS AND IS PART OF AN
ONGOING SERIES OF CROSS
VALIDATION STUDIES AND
REFINEMENT OF THOSE ALGORITHMS
THAT WILL IT.
OVER ALL, THIS EHR COHORT SET OF
HAT FORMS HAS BEEN VERY
EFFECTIVE AND PRODUCTIVE IN
GIVING US SOME EARLY LEANINGS
ABOUT THE RELATIONSHIP BETWEEN
THE SEVERITY OF THE ACUTE COVID
ON YOUR INCREASED RISK OF
DEVELOPING PA IS AC IS S THERE'A
RELATIONSHIP WITH SEVERITY OF
THE ACUTE SYNDROME AND
SIMILARLY, IT IT HAS BEEN
EFFECTIVE IN BOTH VALIDATING
EXTENDING FINDINGS IN TERMS OF
CERTAIN RISK GROUPS THAT ARE
LIKELY, BASED ON CO-MORBIDITIES
TO HAVE AN INCREASED OF
DEVELOPING PASC.
IT'S CERTAINLY ONE OF THOSE
EXAMPLES AND AS WELL OTHER
ISSUES OF CO-MORBIDITIES.
MOREOVER, THIS APPROACH YIELDS
CERTAIN ABOUT SUB CLUSTERS AND
SUB PHENOTYPES OF THE PASC
SYNDROME SO THIS IS AN ACTIVE
AREA OF ON GOING LEARNING USING
THIS PLATFORMS.
AGAIN, THIS GIVES YOU A DRILL
DOWN OF THE CAPACITY TO REALLY
FURTHER UNDERSTAND CO MORBID'
AND THEIR INCOMPETENTER ACTION
AND THE DEVELOPMENT OF ONSET
CONTINUES.
TYPE-2 DIABETES MAY PRE DISPOSE
TO PASC BUT EVEN THOSE WHO
DIDN'T HAVE DIABETES A A
PRE-COVID CONDITION MIGHT
DEVELOP ABNORMALITIES FROM
METABOLISM AND DEVELOP A TYPE-2
DIABETES AND SO, THIS IS WHERE
THESE VIRTUAL COHORTS WILL BE
VERY USEFUL IN UNDERSTANDING
THAT NATURAL HISTORY AND THE
EMERGENCE OF ADDITIONAL
CONDITIONS.
MOREOVER, THESE EHR COHORTS CAN
BE USEFUL IN KIND OF PSEUDO
CLINICAL TRIALS OR 'EM
SIMUOR AND THE ASSOCIATIONWITH H
LESS RISK OF PASC COMPARED TO
THOSE WHO ARE UNVACCINATED AND
SO THESE ARE THE TYPE OF
QUESTIONS THAT ARE BEING PURSUED
AS WE UNDERSTAND AND CAN PRE
TEST AT LEAST GET SIGNALS OF
THERAPIES TRIED OR USED IN THE
REAL WORLD AND THEIR
IMPLICATIONS THAT MAY INFORM OUR
CLINICAL TRIALS PLATFORM AND
INTERVENTIONS AND SIMILAR
ANALYSIS ARE UNDERWAY TO
PAXLOVID, FOR EXAMPLE, SO WE
LOOK FORWARD TO THIS PLATFORM
AND WE CONTINUALLY TO HELP US
ADAPT AND LEARN AS WE GO.
TOWARD THAT END, JUST TO A WORD
ABOUT THE PEDIATRIC COMPONENT,
THE CORE NET ADEPT IN HELPING US
TO, AGAIN, I WON'T BELABOR ALL
THE FINDINGS BUT THE NOTION THAT
THE PREVALENCE OR INCIDENTS FOR
PASC MAY BE LESS IN APPROXIMATE
CHILDREN THAN THE ADULTS THAT
YOU OFTEN HEAR ABOUT 15 TO 20%
FIGURE PEDIATRICS APPEARS TO BE
LOWER AND THEN PARTICULARLY IN
THEIR OBSERVATIONS, RELATING IT
TO PARTICULAR SUBGROUPS, OFTEN
WHERE THE SEVERITY OF THE ACUTE
COVID APPEARED TO BE A
PARTICULAR PROMINENT SIGNAL FOR
CHILDREN.
SOF THIS HAS BEEN, AGAIN, A
USEFUL ELEMENT THAT WE THINK
WILL INFORM OUR CHARACTERIZATION
OF THIS OF OF PARTICULAR CLIP
CAL SPECCLINICAL SPECTRUM THAT S
KIDS SINCE THEY'RE NOT LITTLE
ADULTS.
JUST A QUICK DRILL DOWN ON THE
CLINICAL COHORTS.
THIS IS STILL RELATIVELY EARLY
DAYS AND THIS IS WHERE WE'RE
BUILDING THE COHORT AND TRYING
TO STUDY IT IT ALL THE AT THE
SAME TIME AND AS WE INDICATED
HAD TWO COM POPE APARTMENTS TO .
WE FOLLOW PEOPLE WHO ARE COVID
AND TRACK THEM FOR THE
TRAJECTORY OF RECOVERY AND IN
THAT WAY, DELINEATE WHO IS
DEVELOPING PASC WHO DOES NOT IN
A WAY THAT WE CAPTURE OF THE
INFORMATION OF THEIR ACUTE
EXPOSURE AND BIOSPECIMEN TO
UNDERSTAND THAT SUSCEPTIBILITY
AND RISK AND POST ACUTE BOTH OF
THOSE GOT UNDER WAVE AT THE
BEGINNING OF HAD YEAR AND HAVE
MADE INCREDIBLE PROGRESS WITH
THE POST ACUTES BEING FULLY EP
ROLLED IN THE NEXT COUPLE OF
MONTHS WITH NEARLY 8,000
INDIVIDUALS IN THAT GROUP AND I
APOLOGIZE, I THINK THERE'S AN
ERROR ON THE ACUTES.
OVER ALL WE'RE 50% TO THAT
TARGET AND ANTICIPATE IN EARLY
'23, THAT THAT WILL BE COMPLETE
AS WELL.
SO, RAPID PROGRESS IN YELLING
ALREADY IS THE LARGEST, MOST
DIVERSE AND WILL BE THE MOST
COMPREHENSIVELY DEFINED COHORT
OF PA IS SC PATIENTS THAT EXIST
IN THE WORLD TO OUR KNOWLEDGE.
EVEN THOUGH WE'RE STILL BUILDING
THE PLANE WHILE WE FLY IT, WE'RE
TRYING TO LAND WITH SOME RESULTS
EARLY ON AND THEY'RE ALREADY
STARTING TO GIVE US HINTS ABOUT
THAT PERSISTENCE OF SYMPTOMS,
THOSE WHO ARE ACUTELY EFFECT AND
APPEARS IN OUR PRELIMINARY
FINDINGS WITH THAT ABOUT 20% OF
FIGURE FOR THE ADULTS AND
MOREOVER, WE'RE FOLLOWING THAT
TRAJECTORY THREE MONTHS TO SIX
MONTHS AND WE'RE SEEING THOSE
SYMPTOMS AND QUITE FRANKLY IN A
LOT OF THE SURVEYS, ARE PRESENT
AND THE CONTROLS AS WELL AS THE
PATIENTS AND THAT RELATES AGAIN
TO THAT BROAD SPECTRUM OF
SYMPTOMS IN WHICH YOU ASK A
INDIVIDUAL, HAVE YOU HAD A
HEADACHE OR ADULT SLEEPING AND
MANY OF YOU WHO FLEW IN HERE THE
LAST FEW DAYS MIGHT RESPOND YES
WITH THAT AND DES TI SEEING HOWT
CHANGES OVER TIME.
AND SO, THESE ARE PROMISING
RESULTS, TELLING US ALREADY
ABOUT THE NUMBERS OF SYMPTOMS
AND THE CLUSTERING OF SYMPTOMS
AND WE THINK IT WILL BE
IMPORTANT IN THE CLINICAL
SPECTRUM.
NEXT SLIDE, PLEASE.
SO SIMILARLY, MAKING PROGRESS,
ALBEIT IT AT A DIFFERENT SPACE
IN THE PEDIATRICS IT LAGGED
BEHIND FOR JUDICIOUSNESS ABOUT
EXPOSURES TO CHILDREN,
VULNERABLE POPULATIONS EX THE
PROTOCOLS PARTICULARLY THE MORE
IN-DEPTH PROTOCOLS THAT WERE
THOUGHTFULLY DONE SO IT'S
GETTING IT WAY AND BEGINNING IN
MAY ONLY BEING UP FOR SEVERAL
MONTHS, AGAIN, ACCRUAL HAS HAD
SPEED BUMPING BUT IT UNDERWAY
AND ON PACE.
IN DEED, UP WITH OF THE SUB
ELEMENTS OF THE PEDIATRIC
ELEMENTS OF RECOVER, INVOLVES A
PARTICULAR FOCUS ON A
DISTINCTIVE TYPE OF POST ACUTE
SEQUELAE OF SARS-CoV-2
INFECTION.
THE MULTI SYSTEM INFLAMMATORY
SYNDROME IN CHILDREN IN WHICH
THAT EMERGED RELATIVELY EARLY ON
IN '20 AND THERE'S A STUDY MUSIC
THAT HAS NOW BECOME FOLDED UNDER
RECOVER SINCE IT HAS THIS
PARTICULAR FORM OF PA IS SC, IF
YOU WILL, AND WITH THAT ARTICLEY
LEANING, ONE OF THE QUESTIONS
THAT BEGAN OR EMERGED EARLY ON
WAS IF THESE CHILDREN, WHO WERE
OFTEN ASYMPTOMATIC OR ONLY
MILDLY SYMPTOMATIC TO THEIR
FIRST EXPOSURE TO THE VIRUS SOME
EIGHT TO 12 WEEKS LATER WE HAVE
THIS INCREDIBLE DIFFICULT
SYNDROME AND MADE THEM VERY SICK
INVOLVING ICU ADMISSION.
IF IF THE VIRUS IT TRIGGER THAT
DELAYED RESPONSE, HOW WOULD
THESE KIDS RESPOND IF WE GAVE
THEM A VACCINE AND AGAIN GAVE
THEM EXPOSURE TO THE SPIKE
PROTEIN SO IT'S A QUESTION OF
WHETHER THAT WOULD BE IN DEED
SAFE AND IN DEED THE STUDIES
SUGGEST THAT WITH RELIEF, YES,
THESE CHILDREN COULD BE
VACCINATED SAFELY.
JUST TO GIVE YOU A DESCRIPTION
THAT THESE ARE LEVERAGING
BASICALLY A COHORT OF COHORTS.
MANY COHORTS THAT HAVE BEEN
COMMUNITY-BASED LONGITUDINAL
CALLED C4R INVOLVING FRAMING NO
MASKS, REGARDS, ET CETERA, AND
AS WELL AS ABCD AND ENGAGING
THOSE INVESTIGATORS IN THIS
PROCESS OF RECOVERY WHERE THEY
CAN DO SURVEILLANCE AND MUCH
COLLECT BIOSPECIMENS AND THEY'RE
LINKED ALREADY TO LONGITUDINAL
STUDIES WITH PRE-COVID
INFORMATION AND THE ABILITY TO
TRACK THOSE TRAJECTORIES OVER
TIME SO WE'RE EXCITED ABOUT
THESE EFFORTS IN WHICH FOR THE
ADULT THEY'VE ALREADY STARTED TO
CHARACTERIZE THOSE WHO HAVE HAD
COVID EX THEY'VE BEEN DOING
SURVEILLANCE AND THEY'VE HAD
SOME SENSE OF CHARACTERIZATION
OF THE VARIANCE AND WHAT OCCURS
OVER TIME AND THIS SHOULD BE
USEFUL INFORMATION AS WELL AS
ALREADY STARTING TO IDENTIFY
INDIVIDUALS WITH PERSISTENT
SYSTEMS POTENTIALLY CONSISTENT
WITH PASC SO AGAIN, I'M EXCITED
ABOUT THIS SYNERGISTIC PIECE OF
INFORMATION.
NEXT SLIDE, PLEASE.
PATHO BIOLOGY JUST TO GIVE YOU A
FEEL, THAT AGAIN LAST YEAR, THAT
ARE NOW STIMULATING INVESTIGATOR
INITIATED STUDIES IN A VARIETY
OF DOMAINS THAT ARE KIND OF
LISTED THERE ON THE RIGHT AND
WHICH INVESTIGATORS ARE STUDYING
THE CONSEQUENCE OF ACUTE
INFECTION AND DEVELOPING ANIMAL
MODELS AND EXPLORING ALL SORTS
OF 'EM UNION DYSFUNCTION STUDIES
AND BOTH IN ANIMAL MODELS AS
WELL AS RECOVER SPECIMENS AND
AGAIN THE SLIDE GIVES YOU A
SENSE OF THE BREADTH OF
ACTIVITIES AND THE BREADTH OF SO
I SYSTEMS AND THE BREADTH OF
ICs QUITE FRANKLY THAT THESE
STUDIES ARE BEING AWARDEDFUL
WILLING AND FOLLOWED.
I WISH I COULD TELL YOU MORE
ABOUT THOSE BUT THOSE ARE
UNDERWAY.
JUST TO GIVE YOU A FLAVOR, MANY
OF THESE AWARDEES HAD
PRELIMINARY DATA BASED ON SMALL
STUDIES TO TEST SOME OF THESE
HYPOTHESIS BY AUTO ANTIBODIES,
ET CETERA, AND THIS IS JUST ONE
RECENT PAPER THAT IS I WILL LUS
TRA TIVE OF THE STUDIES THAT
HAVE BEEN INITIATED ALL SMALL
SCALE AND THE SIDE INVESTIGATORS
IN RECOVER WHO THEM HAVE THE
OPPORTUNITY TO NOW EXTEND,
EVALUATE AND BRING THOSE TO
SCALE AND ALREADY YOU CAN START
TO SEE PATTERNS EMERGING AND
DISSECT OUT CLUSTERS OF
SYMPTOMS, AUTO ANTIBODIES AND
CYTOKINES SO WE CAN SEE A
PATHWAY WHERE WE'LL GET INSIGHTS
IN THE PATHOGENESIS.
SIMILARLY, IN SOME WAYS, MISC
MIGHT PROVIDE US WITH AID
FORERUNNER EXEMPLAR GIVEN THAT
THOSE STUDIES HAVE BEEN MORE
MATURE AND SINCE THEY STARTED
EARLIER AND IN IN WAYS ALSO THE
POTENTIAL FOR UNDERSTANDING PASC
IN INFORMING OTHER PUNITIVE POST
VIRAL SYNDROMES AND IN THIS
CASE, IT WAS RECOGNIZED
RELATIVELY EARTH ON THAT MISSY
HAD SIMILAR CHARACTERISTICS
CLINICALLY OF KAWASAKI'S DISEASE
WHICH HAS BEEN STUDIED FOR
DECADES WITHOUT HAVING A CLEAR
UNDERSTANUNDERSTANDING OF ITS
IDEOLOGICALLY PATHWAYS AND
PRESUMED TO BE A POST VIRAL
SYNDROME AND IN DEED CUT TO GO
THE CHASE, A NUMBER OF STUDIES
HAVE BEEN DONE NOW THAT HAVE
IDENTIFIED SUBTLE, DIFFERENCES
AND CLINICAL PRESENTATIONS AND
NOW LAYERING ON LIKE IT OR A
DEEP PHENOTYPING AND STARTING TO
SEE CLUSTERS THAT DISTINGUISH
MISS-C FROM KAWASAKI FROM COVID
AND THESE ARE DELINEATIONS WE
CAN ANTICIPATE AND WE HOPE WE
CAN RECOVER WITH PASC AND POST
VIRAL SYNDROME.
TOWARD THAT END, IT IS STARTING
TO REVEAL AND REAL MECHANISTIC
HYPOTHESIS UNDERLINE MIS-C AND
THIS IS WHAT WE'RE HOPING WILL
BE THE TRAJECTORY OF RECOVER AS
WE MOVE FORWARD AND ENGAGE IN
SOME OF THESE PATHO BIOLOGICAL
STUDIES IN DEPTH AT SCALE WITH
THE PRECISION AND COMMONALITY OF
CHARACTERIZATION ON THE RECOVER
PLATFORM.
NEXT SLIDE IS A WRAP-UP HERE.
WITH FINAL SET OF SLIDES RELATED
TO CLINICAL TRIALS AND JUST
WANTED TO GIVE YOU, AGAIN, A
REITERATION OF THAT PRINCIPAL OF
STRIVING TO BE PATIENT CENTERED
AND PART OF INITIATING THE
CLINICAL TRIAL PLATFORMS, WAS TO
TAP INTO DIVERSE PERSPECTIVES
AND EXPERTISE BOTH LIVED
EXPERIENCE AS WELL AS DISCIPLINE
EXPERTISE AND VARIETY OF
STAKEHOLDERS, WHETHER NON-PROFIT
PATIENT ADVOCACY AND OR THE
PRIVATE SECTOR AND ALL OF THOSE
PLAYERS AND INPUTS ARE CRITICAL
TO DEFINING WHAT SHOULD BE THE
PRIORITIES OF THE CLIP TAL TRI L
PORTFOLIO AND I WANT TO
HIGHLIGHT THE PATIENT COMPONENT
HELPING US DEFINE SYMPTOMS
MEANINGFUL TO PATIENTS TO BE
RELIEVED.
THERE ARE A LOT OF THINGS THAT
SCIENTISTS WOULD LIKE TO MEASURE
THAT COULD SHOW A P VALUE BUT IF
THAT'S NOT MEANINGFUL TO
PATIENTS WHO ARE SUFFERING, THEN
WE'VE NOT HIT THE MARK AND SO
THAT IS WHY THOSE PERSPECTIVES
WERE IMPORTANT WITH FOCUS
GROUPS, SURVEYS OR THEIR ACTIVE
INVOLVEMENT IN THE PROTOCOL
DEVELOPMENT AND PATIENTS HAVE
BEEN INVOLVED IN ALL THOSE
COMPONENTS.
SO.SO, THIS GIVES YOU OUR CURRET
FRAMEWORK WHERE WE'RE ABOUT TO
ROLLOUT A SERIES OF ADAPTIVE
MASTER PROTOCOLS ACROSS THESE
FIVE BUCKETS AND DOMAINS.
YOU SEE THE FIRST ONE RELATED TO
BIO PERSISTENCE, REACTIVATION
AND 'EM UNION DISREGULATION AND
ANOTHER ONE CLASS TORE AROUND
THE ELEMENTS OF EX AUTO NO NOM I
AND -- AND THESEREPEAT EVEN SILY
MAY SHARE COMMON INSTRUMENTS AND
RECOGNIZING THE OVERLAPPING
NATURE OF IN OF THESE SYMPTOMS
IN THE HOLISTIC PATIENT AND SO
ONE OF THE STRENGTHS, UNLIKE
WHAT WE DID WITH ACTIVE IS EACH
OF THE PLATFORMS COULD HAVE
CONTROLS THAT INFORMED EACH
OTHER AND THAT AGAIN WITH COMMON
DATA ELEMENTS, IN A CORE FOR
MANY OF THEM, WE HOPE TO LEARN
FASTER AND BETTER FROM THE
CLINICAL TRIALS TO GET SHOTS ON
GOAL TO SEE WHAT IS WORKING AND
WHAT'S NOT TO RELIEF SUFFERING
AS SOON AS WE POSSIBLY CAN WITH
HIGH-THROUGHPUT AND SPEED AND
SPEED AT THE -- BUT A PACE AT
THE SPEED OF TRUST AND BOTH THE
TRUST OF THE PATIENTS WHO ARE
ALONGSIDE US AND HELPING TO
CREATE THIS AS WELL AS THE
TRUSTWORTHINESS OF OF THE DATA.
WE THINK IT'S CRITICALLY
IMPORTANT THAT WE GET THE RIGHT
ANSWER, NOT JUST THE QUICKEST
ANSWER.
SO THAT'S THE PACE THAT WE'RE
MOVING WITH A SENSE OF URGENCY
TO RELIEF THE SUFFERING OF THESE
PATIENTS WITH PA IASC.
I THINK RECOVERING TEAMS BOTH
THOSE AND EXTRAMURAL
COMMUNITIES, PATIENTS, PROVIDERS
HAVE COME TOGETHER INCREDIBLY TO
TACKLE SOMETHING OF COMPLEXITY
WITH A LOT OF UNKNOWNS AND HAVE
DONE SO WITH A LOT OF FOLKS
LEANING IN HEAVILY AND I BELIEVE
I HAVE CREATED A COHORT OF SCALE
AND SIZE OF 11,000 IN A YEAR
FASTER THAN ALMOST ANY OTHER NIH
STUDY I'M AWARE OF OF THIS
COMPLEXITY AND
MULTI-DISCIPLMULTI-DISCIPLINARYO
I THINK WE'RE WELL POISED TO,
EVEN BECAUSE IT'S SUCH ROBUST
SIZE, TO BEGIN LEARNING FROM
APPAL SIS BECAUSE IT'S ALREADY
THE LARGEST ONE AND WE LOOK
FORWARD TO SOME OF THAT DATA IN
THE FIRST COUPLE OF QUARTERS OF
2023 WITH HAVING BUILT THE PLAIN
AND GENERAL DATA ALONG THE WAY.
SO SIMILARLY WE LOOK FORWARD TO
CROSS VALIDATION STUDIES AND THE
ELECTRIC TROPIC HEALTH RECORDS
AND OTHER CLINICAL TRIAL EMULATE
AND INTEGRATING SENSOR DATA AND
THE MOBILE DIGITAL PLATFORM AND
TO REALLY CAPTURE THAT 24/7,
3656 PATIENTS OF PASC AND
FINALLY WE'RE VERY EXCITED ABOUT
THE MANY STUDIES OF THE THAT
WE'RE CONFIDENT AND WE'LL START
TO PURSUE THE HYPOTHESIS
OUTLINED BEFORE IN DEED WE'VE
BEEN I AM TRYIINTRIGUED ON DATAE
PROTEIN AND WE'RE POISED TO
START TO VALIDATE SOME OF THOSE
STUD'S AND MANY OF THEM WERE
DONE WITH FEWER THAN 100 OR AT
MOST 200 INDIVIDUALS AND WE'RE
NOW ABLE TO DO THAT AT QUITE A
GREATER SCALE AND
COMPREHENSIVENESS AND I LOOK
FORWARD TO THAT DATA AGAIN IN
THE NEXT SIX MONTHS OR SO.
AND FINALLY, THE CLINICAL TRIAL
PORTFOLIO WE OUTLINED AGAIN,
WE'RE ANTICIPATING THE GROUPS
HAVE BEEN HARD AT WORK AND
DEVELOPING THOSE PROTOCOLS AND
PROTOCOLS TAKE REVIEW AND
ACTIVATION AND ET CETERA BUT WE
ANTICIPATE A STAGGERED ROLLOUT
IN Q1, Q 2 OF 2023.
>>THANK YOU FOR THE CHALLENGE
AND POPS.
WE HAVE A COUPLE HANDS UP HERE.
>>THANK YOU.
WHETHER IT'S THE SCALE AND SCOPE
OF THIS PROGRAM AMAZING.
I WANT TO SPEAK PARTICULARLY TO
LOCATION ENGAGEMENT AND RECOVER
HAS ON THE WEBSITE AN AMBITIOUS
COMMUNITY STRATEGY AND SOME THE
PUBLIC FACING INFORMATION ABOUT
THE RECOVER PROGRAM AND FROM
DISCUSSIONS THAT I'VE HAD WITH
SEVERAL PATIENTS RECOVERING ON
RECOVER WORKING GROUPS, I
BELIEVE THAT IMPLEMENTATION IS
FALLING SHORT AND IN PARTICULAR,
ALTHOUGH PATIENTS HAVE INPUT
INTO DECISIONS, EQUAL STATUS IN
DECISION-MAKING THAT WOULD BE
EXPECTED WHEN USING WORDS LIKE
CO CO-DESIGN AND CO-DEFINE.
THERE'S ALWAYS LEARNING AND
BUMPS ALONG THE WAY BUT I WOULD
HOPE OUR TRANSPARENCY IN THE
PROCESSES AND IN STAGE 5 OF THE
STRATEGY, IT SAYS, THE GOAL IS
TO REFINE AND EXPAND ENGAGEMENT
APPROACHES THROUGHOUT THE LIFE
OF THE INITIATIVE SO TO BE THAT
MODEL FOR PATIENT ENGAGEMENT
THAT YOU SPOKE OF Dr. GIBBONS,
I WOULD LIKE TO REQUEST A MORE
EXCLUSIVE LEARNING PLAN THAT IS
MORE TRANSPARENT ABOUT PATIENT I
AM CONCLUSION IN GOVERNANCE AND
THAT THE DECISIONS MADE AND THE
PATIENT CONTRIBUTIONS TO THOSE
DECISIONS THAT GIVES PATIENTS
AND EQUAL ROLE IN REFINING
APPROACHES AFTER COLLECTING
FEEDBACK AND THAT TRANSPARENTLY
FEEDS BACK THE LEARNINGS AND THE
IMPROVEMENTS TO THE LEADERSHIP
COMMITTEES AND PATIENTS SO WE
CAN SEE THAT LEARNING HAPPENING.
GETTING PATIENT ENGAGEMENT RIGHT
IN THIS, IS CRITICAL FOR BOTH
PATIENTS WHO ARE SUFFERING AND
FOR THE SCIENTIFIC FIELD WHICH
IS UNDER SCRUTINY SO A MORE
ROBUST LEARNING PROCESS WILL
EARN MORE TRUST FROM THE PUBLIC,
IMPROVE CLINICAL TRIAL AND
RECRUITMENTS AND IT WILL RESULT
IN BETTER SIGN SCIENTIFIC OUTCO.
>>THANK YOU FOR THAT.
I APOLOGIES, I CAN'T SEE THAT
NAME.
CERTAINLY, WE WOULD BE HAPPY TO
ENGAGE WITH YOU OFF LINE TO GET
A FURTHER UNDERSTANDING OF WHAT
YOU ARE HEARING FROM THE VICTIMS
YOU DESCRIBED.
CERTAINLY, WE'RE COMMITTED O THE
PREPS PEL.
AS YOU SAID, IT'S AN AMBITIOUS
GOAL -- AT SPEED, SCALE AND
COMPLEXITY.
I RECOGNIZE THAT WE PROBABLY
DON'T ALWAYS GET IT IT RIGHT,
AND WE'RE ALL LEARNING AS WE GO,
THAT'S WHY OUR OTHER APPROACHES
TO BE ADAPTIVE SO WE'RE ALL
LEARNING AND WE WOULD APPRECIATE
THAT FEEDBACK AND ANY EP ENHANCS
THAT THE PATIENTS PROPOSE IN
DEED THAT IS PART OF WHAT WE
ENGAGE THE NATIONAL COMMUNITY ET
GROUP AND WE CONTINUE TO THAT
IMPROVEMENT.
THAT SAID, I THINK WE SHOULD
ALSO APPRECIATE THAT CO CREATION
INVOLVES ALMOST AN OMNI
DIRECTIONAL CHANGE.
IT'S KNOWLEDGE EXCHANGE ACROSS
MANY DIFFERENT STAKEHOLDERS AND
SO WE HAVE TO, AT THE END OF THE
DAY, RECONCILE THE INPUT OF OUR
INDUSTRY PARTNERS AS WELL AS OUR
PATIENTS, PROVIDERS AND
CLINICIAN SCIENCES AND SO ALL
THOSE INPUTS ARE WELCOME,
LISTENED TO AND HAVE AN IMPACT
AND AN OUTCOME SO IT'S IMPORTANT
TO APPRECIATE NO ONE VOICE CAN
DRIVE THE ENTIRE CONSORTIUM AS
WELL.
AND SO, IT'S THAT BALANCE.
THE SAME WAY THAT THERE'S
OPINIONS AROUND THE ACD, NOT
EVERYTHING IS UNANIMOUS.
AND THEN DECISIONS HAVE TO BE
MADE.
IN THIS CASE BY THE NIH DIRECTOR
BUT THAT'S NOT IN ANYWAY
DIMINISHING ANY OF THE OPINIONS
OF ANY MEMBER OF THE ACD.
AND SO, AGAIN, WE APPRECIATE THE
OF FEEDBACK AND I'D LIKE TO
LEARN MORE AND WE'RE COMMITTED
ENSURING ALL THE VOICES ARE
HEARD AND ALSO RECOGNIZING,
BECAUSE OF THE DIVERSITY OF
VOICES, THAT SOMETIMES
EVERYTHING WON'T BE UNANIMOUS
AND WE'RE PRESSED TO MOVE
FORWARD AT THE SPEED DEMANDED BY
THE PATIENTS AND THAT IS PART OF
WORKING THROUGH THIS CONSORTIUM.
THANK YOU.
>>THANK YOU, GARY.
>>WELL, I WOULD LIKE TO ADD MY
CONGRATULATIONS TO THE
REMARKABLE ACHIEVEMENTS THAT
HAVE BEEN ESTABLISHED IN A
RELATIVELY SHORT PERIOD OF TIME.
Dr. GIBBONS, I'M OVER HERE.
SO, I WAS WONDERING WHETHER YOU
COULD SPEAK TO THE THERAPEUTIC
CHALLENGE, WHAT YOU HAVE
DESCRIBED AS A PULL-' SYSTEMS OS
BIOLOGY AND I HESITATE TO CALL
IT DISEASE BUT LONGSTANDING
CLINICAL CHALLENGE.
AND TO THAT END, I'M WONDERING
WHETHER YOU COULD DESCRIBE THE
STRATEGIES THAT YOU AND YOUR
COLLECTIVE RECOVER TEAM ARE
THOUGHT ABOUT IN TERMS OF
ADDRESSING THIS MULTI-SYSTEM
BIOLOGY IN PARALLEL EX YOU KNOW,
COMBINATION THERAPIES AS YOU GO
FORWARD AND CAN DESIGN CLINICAL
TRIALS.
>>THAT'S ANOTHER GREAT POINT.
HOPEFULLY YOU APPRECIATE WE'RE
APPROACHING PROFOUND HUMILITY.
WE HAVE AMBITIOUS GE GOALS HERE.
THAT IS A DAUNTING TASK.
THAT WAS PART OF THE REASON TO
ESTABLISH THE MASTER PROTOCOLS.
AGAIN, THERE ARE MANY WHO SORT
OF SAID, OH, LET'S JUST PUT OUT
A FOA FOR CLINICAL TRIALS AND
LET 30 GROUPS GO AT IT, AND SEE
WHAT HAPPENS.
AND THE CONCERN WAS THAT THEY
MAY USE DIFFERENT DEFINITIONS OF
PASC AND HAVE NOT MANY COM ON
DATA ELEMENTS OR COM ON
ENDPOINTS AND THERE WAS A
HIGH-RISK WE WOULD HAVE A KA
COULD INFORMATION WHICH MUCH LIE
BEGINNING OF THE COVID RESPONSE
YIELDED STUDIES THAT SO THAT IS
THE INTENTIONALITY OF THESE
PROTOCOLS TO LEVERAGE OF ALL
THOSE MORE SYSTEMATIC STRATEGIES
AND TOWARD THAT END, ONE OF THE
KEY PARTS IS TO TRACK,
PARTICULARLY SOME OF THE SUB
CLUSTERS WITHIN ALMOST ALL THE
MASTER PROTOCOLS O EVEN IF IF IT
IS ABOUT EXERCISE TOLERANCE YOU
STILL MIGHT CAPTURE THINGS ABOUT
SLEEP OR COGNITION, OR THESE
OTHER ELEMENTS AND THAT IS WHERE
WE'RE HOPING, BECAUSE THERE'S
CERTAIN CORE ELEMENTS THAT RUN
ACROSS, END POINTS THAT ARE
COMMON AND INCLUSION THAT WILL
DO, EVEN WITH A PARTICULAR
ANTIVIRAL, THAT IT MIGHT STILL
HAVE AN INFLUENCE ON SOME OF
THESE OTHER SYMPTOM COMPLEXES OR
SOMETHING THAT WE DO IN THE
SPACE OF AGAIN, FATIGUE, AND WE
HAVE LEARNED SOMETHING ELSE
ABOUT SOME OTHER ELEMENTS OF
CARDIO PULMONARY FUNCTION SO
IT'S REALLY WITH THAT INTENTION
MIND WE'RE CONTEMPLATING PHASE-2
TYPE MECHANISTIC STUDIES SUCH TO
YOUR POINT ABOUT THE HUMAN
SYSTEM BIOLOGY, IT MAY NOT
ALWAYS BE LINK TODAY A
LARGE-SCALE CLINICAL OUTCOME, BT
USING ANTIVIRAL HAS A PROBE YOU
WOULD BE ABLE TO TRACK, IN A
MECHAMECHANISTIC WAY T CFTC BEHR
OR HOW THE IMMUNE SYSTEM ADAPTS
OR DOES NOT IN RELATIONSHIP TO
THAT SO THIS BIOMARKER
DISCOVERY, THE BIOSPECIMENS, THE
ABILITY TO DO MECHANIC IS TICK
STUDIES EMBEDDED ON THESE
PROTOCOLS IS ALSO A KEY
COMPONENT OF THE INATTEMPT TO DO
WHAT YOU ARE SAYING.
HOPEFULLY THAT HELPS.
>>VERY EXCITING AND THANK YOU
SO MUCH.
HOWARD.
>>HI, Dr. GIBBONS.
I'M HOWARD CHANG AND I'M A
MEMBER OF THE ACD AND ALSO
PHYSICIAN SCIENTIST AT STAN
FARDOWSA ABDI.
THANSTANFORD.I HAVE A QUESTION E
CONNECTION BETWEEN THE LAWN
ATTITUDINAL COHORTS AND THE
DIFFERENT PILLARS OF THIS
CONSORTIUM AND YOU MADE A POINT
YOU RECRUITED A DIVERSE PATIENT
POPULATION.
I WONDER IF THOSE BLOOD SAMPLES
OF THE COHORTS ARE GOING BACK TO
THE LABS DOING THE PATHO BIOLOGY
STUDIES ARE THOSE MECHANISTIC
STUDIES SEPARATE AND THOSE
INVESTIGATORS SOLELY WORKING ON
SAMPLES AVAILABLE TO THEM AT
THEIR LOCAL INSTITUTIONS?
AND BECAUSE IT SEEMS THIS WOULD
BE A IMPORTANT OPPORTUNITY TO
MAKE SURE THESE MECHANISTIC
STUDIES WOULD ADDRESS THE
BIOLOGICAL BASIS COMING FROM
THESE DIVERSE PATIENT
POPULATIONS?
>>THANK YOU FOR THAT.
YES, WE OBVIOUSLY DON'T PRECLUDE
INVESTIGATORS WITHIN RECOVERED
CONSORTIUM, MANY WHO PURSUE
LOCAL STUDIES AND SOME OF THE
NOSI INVOLVE THAT BUT AS YOU
ALSO POINTED OUT, COUPLE TO THAT
IS THE THERE IS A CENTRAL VIAL
REPOSITORY AND ALL THE SITES ARE
COLLECTING THE BIOSPECIMENS THAT
ABOUT TO THAT CENTRALIZED
REPOSITORY THAT'S A PROTOCOL
THAT ON GOING AND QUITE FRANKLY
ONE AS WE LEARN MORE AND NEW
QUESTIONS ARE RAISED THAT EFFECT
HOW YOU DO BIOSPECIMEN
COLLECTIONS SO WE WANT TO BE
ADAPTIVE BUT THE BASIC CONCEPT
OF WHAT YOU ARE DESCRIBING IS
THERE AND THAT'S THE WHOLE
NOTION OF HAVING THE BIO
REPOSITORY AND I WISH I HAD THE
NUMBERS OFF MY TONGUE BUT I KNOW
IT'S IN THE MILLIONS ALREADY OF
BIOSPECIMENS THAT WERE
REPOSITORY AND THAT ENABLES US
TO DO THINGS AGAIN AT SCALE BUT
HOPEFULLY, IN HIGH-THROUGHPUT IN
A WAY THAT'S CONSISTENT WHERE
AGAIN, WE CAN MERGE DATA AND
LEVERAGE IT AS A COLLECTIVE AND
SO, THAT'S THE WHOLE INTENTION
AND THAT IS WHAT WE'RE EXECUTING
NOW.
IN DEED, A PRELIMINARY STATEMENT
IS IS UNDER WAY AND LOOKING AT
SPIKE PROTEIN PERSISTENCE IN
THAT SAME SORT OF FASHION IN
WHICH MANY OF YOU ARE AWARE, A
STUDY HAS BEEN PUBLISHED AT THE
BOSTON GROUP AND THAT LOOKED AT
THAT BUT IN LESS THAN 100 FOLKS
AND NOW THEY'RE ENGAGED IN THAT
ASSAY BEING EXTENDED ACROSS THE
OBSERVATIONAL STUDY WITH
BIOSPECIMENS COLLECTEDDED IN THE
COHORT.
>>THANK YOU, GREAT.
>>I DON'T SEE ANY ADDITIONAL
QUESTIONS.
GARY, I JUST WANT TO THANK YOU
FOR YOUR LEADERSHIP, FOR
WALTER'S LEADERSHIP, FOR TONY'S
LEADERSHIP AND THE VERY LARGE
TEAMS THAT YOU'VE ALL ASSEMBLED.
I'VE BEEN FOLLOWING THIS PERHAPS
MORE CLOSELY THAN ANYTHING ELSE
THAT IS GOING ON AT NIH RIGHT
NOW BECAUSE OF THE IMPORTANCE.
ACTUALLY, PART OF THE REASON WHY
I DISAPPEARED YESTERDAY IN THE
AFTERNOON WAS TO BRIEF A WHITE
HOUSE TEAM ON THE TOPIC ALTHOUGH
I WAS ONLY ALLOWED FIVE MINUTES.
IT WAS A LITTLE BIT MORE
COMPLICATED TO DO THAT.
I SUSPECT THAT EVERY SINGLE
PERSON WATCHING THIS ON VIDEO
CAST OR ON ZOOM, KNOWS AT LEAST
ONE PERSON WHO IS A REFLECT IDEA
THIS WHEN I SAY THIS, WE CAN'T
BE MORE PRECISE BECAUSE, AS YOU
LEARNED FROM GARY AND AS YOU NO
DOUBT APPRECIATE, AS THE VIRUS
EVOLVES, THE SYNDROME MAY BE
EVOLVING ALSO.
SOMEONE WHO INFECTED WITH THE
ANCESTORIAL STRAIN MAY LOOK
DIFFERENTLY THAN SOMEONE
INFECTED WITH OMICRON.
SO, THAT DOESN'T MAKE THINGS ANY
EASIER, PARTICULARLY AS YOU TRY
AND DETERMINE WHICH CONTROL
GROUP YOU ARE GOING TO USE.
SO THE COMPLEXITIES ARE ALL
THERE AND I PARTICULARLY
APPRECIATE THE EFFORT RELATED O
THE PATIENT ENGAGEMENT.
IN SOME WAYS, AND MAYBE IT
SHOULDN'T BE THIS WAY BUT IN
SOME WAYS, THIS IS NEW TERRITORY
FOR THESE TYPES OF STUDIES TO BE
ENGAGING AND I THINK THAT ACD
MEMBER WENDY CHAPMAN POINTED OUT
IN ISSUES THAT OBVIOUSLY I KNOW
YOU AND YOUR TEAM WILL GET
TOGETHER WITH HER TO TALK OUT.
UNDERSTANDING THIS IS A BALANCE
BUT WE WANT TO GET IT RIGHT.
THE THE PATIENT PERSPECTIVE,
GIVEN THE RANGE OF
PRESENTATIONS, IS SO VERY, VERY
IMPORTANT.
AT END, THERE'S NO DOUBT WE'RE
GOING TO LEARN A TREMENDOUS
AMOUNT AND I THINK IN SO DOING,
WE'LL LEARN HOW TO BEST HELP
INDIVIDUALS BUT IT IS -- WE'VE
AT THE BEGINNING OF THIS JOURNEY
AND I HOPE EVERYBODY APPRECIATES
THAT AND I CERTAINLY HOPE THAT
EVERYBODY CONTINUES TO EXERCISE
SOME DEGREE OF PATIENCE, WHICH I
KNOW IS HARD WHEN YOU DON'T FEEL
WELL BUT THAT'S THE HOPE.
BARBRA, YOU HAVE A COMMENT OR A
QUESTION.
>>YEAH, ACTUALLY IT WAS YOUR
MENTION OF THE TEMPORAL ASPECT
AND THE LONGITUDINAL ASPECT THAT
TRIGGERED A QUESTION.
AND I KNOW EARLY ON THERE WAS A
DECISION TO KEEP THIS FOCUSED ON
COVID-INITIATED PAST THAT YOU
DID COME BACK AND MENTION MECSF
EX OTHER KINDS OF SYNDROMES THAT
HAVE BEEN AROUND FOR A WHILE.
AND THAT MANY SUSPECTED RELATED
BUT NOT EXACTLY HOW.
AS WE SEE THE BEGINNINGS OF THE
CLUSTERINGS AND ALL OF THAT, I
WONDER IF THERE'S ANY THOUGHT OF
A RETHINK THAT MIGHT BRING SOME
OF THOSE IN PARTLY BECAUSE THOSE
SYNDROMES OFFER A PATIENT
POPULATION WHERE TIMES ARROW
GOES OUT FAR INTO THE FUTURE.
PEOPLE WHO HAVE BEEN EFFECTED
FOR A LONG TIME.
AND SO IT MIGHT BE TO BENEFIT TO
ACTUALLY BRING THAT IN SOONER
RATHER THAN LATER EVEN IF NOT IN
AT THE VERY START SO, IS IS THIS
ANY THINKING ABOUT BRINGING THAT
A LITTLE CLOSER IN AND GETTING
SOME OF THOSE PEOPLE TO THE
COHORT.
>>JUST MAYBE TO CLARIFY, I
DON'T THINK THERE WAS ANYTHING
PRECLUDED THEIR E ENGAGEMENT OR
INCLUSION.
THE FOCUS GIVEN TO US BY
CONGRESS, THIS IS A COVID
RESPONSE BUT WE'VE ALWAYS
ANTICIPATED COMPARATIVE STUDIES
OR INCLUSION AND WE'RE
APPROPRIATE AND CLINICAL TRIALS
AND ET CETERA.
THOSE INDIVIDUALS MEET THE
INCLUSIONS.
SO, IN DEED, I DON'T KNOW --
>>ARE THE INCLUSION CRITERIA
SUCH THAT A COVID INFECTION
ITSELF DOESN'T NEED TON PART OF
INCLUSION?
>>WE'LL REALLY TALKING ABOUT
HOW DO WE TAKE THE PAST COHORT
ON RELATED TO OTHER SYNDROMES
AND SO IT'S NOT SO MUCH PUTTING
THEM INTO THE COHORT, BECAUSE
FOCUSING ON COVID BUT ALSO
ENSURING, PROBABLY PERHAPS
THROUGH OTHER REGISTRIES AROUND
POTS OR NECFS COMPARATIVE GROUPS
OF THOSE CLOSE VIRAL SYNDROMES.
YOU HAVE THE WORKING GROUP
THINKING ABOUT HOW TO DO THOSE
COMPARATIVE OR INTEGRATIVE KIND
OF STUDIES AND ANALYSIS AND
RECOGNIZING AGAIN THE FUNDS FROM
CONGRESS WERE AS PART OF THE
COVID RESPONSE AND THAT AS YOU
PROBABLY AWARE, IT'S BEEN ENGAGE
WITH THIS COMMUNITY FOR DECADES
AND ALREADY HAS INVOLVED
REGISTRIES AND WHAT HAVE YOU.
SO WE SEE THERE'S SOME ANCILLARY
STUDIES THAT WE WANTED THROUGH
THE NOSI THAT ARE DOING THOSE
COMPARATIVE STUDIES AS WE GO AND
THE NUMBER OF THE INVESTIGATORS
WITHIN RECOVER ARE DOING THOSE
COMPARATIVE STUDIES SO THAT WILL
BE DONE AND IT PROBABLY WON'T
INVOLVE A RESOURCES THAT
LEVERAGE RECOVER AND THEY
INVOLVE OTHER SOURCES AS WELL.
>>YES, O SO TO PUT A FINER POIS
THE VERY BEAUTY OF THE STUDY AS
IT IS IS THAT THINGS CAN BE
ASSAYS AT SCALE FOR EXAMPLE SO
THE LOSER CONNECTION ALSO LOSES
SOME OF THE POWER OF THAT HAVING
SAMPLES TREATED IN THE SAME WAY
DATA GATHERED IN THE SAME WAY.
SO ANYWAY, JUST HAVING SAID
THAT, WHAT YOU CAN DO TO BRING
IT CLOSER.
ANYTHING YOU CAN DO THAT
CONGRESS ALLOWS AND ANY OTHER
MECHANISM YOU CAN USE SEEMS LIKE
A GREAT IDEA.
>>AND WE'RE ENDEAVORING TO DO
SO, EXACTLY.
LAYING THE INSTRUMENTS AND
VETTING THE PROTOCOL AND USING
THE UNLESSMENTS FOR THAT INSTRUT
INTENTION.
>>THANK YOU.
>>I DON'T SEE ANY OTHER
COMMENTS OR QUESTIONS.
SO HADSO SHE WE TAKE A BREAK.
PEOPLE MAY COMING INTO SPECIFIC
SESSIONS WE'LL RECONVENE AT
10:30 AND AGAIN, GARY, THANK YOU
AND ALL YOUR COLLEAGUES FOR
EVERYTHING YOU'VE DONE.
>>THEY DO ALL THE WORK, THANK YOU
>>WE WILL KICK IT OFF BUT WE
ARE EXCITED TO HEAR THE
DISCUSSION BECAUSE I KNOW
EVERYONE IS INTERESTED WHAT WE
HAVE BEEN TALKING ABOUT AND
THE DIRECTOR OF AN ADULT AND
IN DOCTOR JORGENSEN ALREADY
THE LAST TWO DAYS AT THIS
POINT NEEDS NO INTRODUCTION.
AND THE DIRECTOR OF EXTERNAL
RESEARCH WILL PROVIDE THEIR
PERSPECTIVE AND AN UPDATE ON
THE WORK THAT WE ARE DOING.
>>THANK YOU AND TO
ALL OF OUR COLLEAGUES.
I AM IN THE ROOM BUT ALL THE
OTHER COLLEAGUES ARE VIRTUALLY
TO SHOW DIFFERENT EFFORTS AND
THE WHOLE NIH APPROACH FOR THE
POLICY PROCESS AND IN SUPPORT
OF OPEN DATA ALTHOUGH NOT THE
FOCUS OF TODAY WE ARE WORKING
VERY CLOSELY WITH THE
INTRAMURAL EFFORTS AS WELL SO
WE ARE PRIVILEGED TO HAVE SUCH
GREAT PEOPLE ON THIS TOPIC.
I WILL START US OFF I DON'T
THINK IT'S NECESSARY FOR THIS
GROUP BUT WE REALLY WANTED TO
PUT INTO CONTEXT THE OPEN
SCIENCE EFFORTS.
AS SCIENTIST WE KNOW DATA IS
THE CATALYST THAT THIS HAS
BEEN BROUGHT INTO FOCUS DURING
THE COVID-19 PANDEMIC.
YOU WILL SEE ON THIS SLIDE
WITH TYPICAL VACCINE
DEVELOPMENT THAT IT WAS LESS
THAN ONE YEAR FROM THE MRNA
VACCINE TO THE FORMER NIH
DIRECTOR GETTING HIS FIRST
VACCINE.
THIS IS BROUGHT INTO FOCUS BY
THE HUGE GLOBAL EFFORT FOR
INFORMATION AND DATA SHARING
WE SAW TWO.5 MILLION GENOMIC
SEQUENCES SHARED PROTEIN
STRUCTURES ROWS AND ROWS OF
CLINICAL DATA AND OF COURSE
QUALIFICATIONS AND PAPERS AND
WANT TO TAKE A NOTE ON THAT AS
WE HAVE HEARD CONVERSATIONS OF
THE IMPORTANCE OF PUBLIC
HEALTH DECISION-MAKING.
WE ARE STARTING TO SEE THAT
EVIDENCE AND ANALYSIS COME TO
BEAR TO EXAMINE THE IMPACTS IN
TERMS OF HOW THE DATA MAY
CHANGE AND WE ARE ACTUALLY
SEEING A LOT OF GOOD EVIDENCE
THAT THERE IS RELIABILITY AND
DATA SUPPORTED SO THIS IS AN
IMPORTANT CONCEPT FOR TODAY.
GOING THROUGH OUR CONVERSATION
WE WANT TO TALK ABOUT THE CORE
PRINCIPLES THAT EVERYONE WILL
AGREE THAT SCIENTIFIC DATA IS
A CATALYST FOR BREAKTHROUGHS
AND DISCOVERIES.
SO TO BE SUCCESSFUL BE NEED TO
HAVE AN INTEGRATED SET OF
POLICIES AND RESOURCES TO
PROMOTE RESPONSIBLE SHARING
AND REUSE AND OF COURSE NIH
AIMS TO PROMOTE EFFECTIVE DATA
SHARING AS THE RULE AND NOT
THE EXCEPTION.
SO IN THINKING ABOUT THE OPEN
DATA ECOSYSTEM AND IS A
COLLECTION OF THE DATA WORKING
WITH PARTICIPANTS HOW WE
ACTUALLY THINK ABOUT ANALYZING
MOST DATA AND CURATING THAT
INFORMATION WITH METADATA AND
HOW IT IS SHARED WITH
REPOSITORIES OR SCIENTIFIC
PUBLICATIONS OR IF IT IS
STORED AND MANAGED END OF
COURSE HOW IT IS USED OR
ACCESSED ENTERING THOSE
PROCEDURES AND MORE SO IN
TERMS OF THE NIH APPROACH AS
AN INTEGRATED AND IN WHAT THE
WHAT TYPE OF PLAN THE DATA
WILL COLLECT HOW WE ANALYZE IT
WHERE IT WILL BE STORED SO WE
ARE WORKING WITH INVESTIGATORS
TO MAKE THAT PRODUCT
RESPECTIVE PLAN THAT ENABLES
THE SPURRING OF THE FASTER
HIGHER QUALITY RESULTS AND
FUTURE INCREASE.
SO THIS PIPELINE LOOKS SIMPLE
BUT IT'S WAY MORE COMPLEX BUT
THERE ARE MANY DECISIONS THAT
MUST BE MADE ALONG THE WAY.
THINKING HOW DO WE MAKE BETA
NOT SHARED IF WE ARE
COLLECTING JUNK DATA AND
NOBODY IS USING IT WE ARE
CREATING A SYSTEM OF JUST
WASTING TIME.
SO THINK OF IMPORTANT DATA
HUNDREDS HOW WE ANNOTATE THE
DATA SETS WHAT ARE THE
SECURITY ISSUES AND THESE ARE
IMPORTANT PRINCIPLES WE WILL
TALK ABOUT IN VARIOUS ASPECTS
OF TODAY.
SO I WENT TO TAKE A QUICK
MOMENT TO TOUCH ON ACCESS
WHICH IS AN EXCITING AND
IMPORTANT FOCUS OF THIS
ADMINISTRATION YOU MAY HAVE
HEARD THE WHITE HOUSE OFFICE
OF SCIENCE TECHNOLOGY POLICY
RECENTLY ISSUED A MEMO TO
ENSURE FREE AND IMMEDIATE AND
EQUITABLE ACCESS TO RESEARCH
SO THIS REALLY CALLS FOR A
UNITED APPROACH ACROSS THE
FEDERAL GOVERNMENT REGARDLESS
OF BUDGET SIZE TO BE PUBLICLY
ACCESSIBLE AND WE'LL TALK MORE
ABOUT THAT IN A MINUTE
SCIENTIFIC DATA SHOULD BE
ACCESSIBLE AND SHOULD INCLUDE
APPROACHES FOR SCIENTIFIC DATA
AND FINALLY POLICIES TO
ESTABLISH RESEARCH OUR
RESPONSIBILITY ON DATA
MANAGEMENT SHARING AND THEN
WITH THOSE IDENTIFIERS ALONG
WITH THE METADATA SO WE ARE
VERY EXCITED TO SEE THIS MEMO
AND THEN TO CHAMPION THE
PRINCIPLES OF TRANSPARENCY AND
ACCESSIBILITY OF FEDERALLY
FUNDED RESEARCH FOR A REALLY
LONG TIME AND THEN TO BE
REALLY STRONG LEADERS IN THIS
FIELD.
THERE IS A STATEMENT ISSUED
ARTICULATING OUR THOUGHTS AND
PLANS.
>>AS WE MOVE FORWARD HOW TO
MAKE SURE WE ARE MAKING HIGH
QUALITY DATA AVAILABLE FOR YOU
REUSE AND DISCOVERY FILE
MINIMIZING THE BURDEN YOU
STAND RULES FOR THE SAKE OF
RULES WE WANT TO DO THIS IN A
WAY THAT IMPORTANTLY I WENT TO
HIGHLIGHT A REALLY STRONG
FOUNDATION.
SO AS MENTIONED THE STARTS
WITH DATA SHARING POLICY IS IN
2003 AND WITH THE PUBLIC
ACCESS POLICY WHICH IS ACCESS
TO PUBLICATIONS WITHIN ONE
YEAR AND WE ALSO HAVE THE
GENOMIC DATA SHARING POLICY
CLINICAL TRIAL POLICY AND TO
TALK ABOUT THE DATA MANAGEMENT
AND SHARING POLICY WHICH IS A
FOCUS OF THE NOW AND WE'RE OFF
TO MORE THAN A RUNNING START
COMING OUT IN 2022 TO FURTHER
EMPHASIZE THE WORK WE HAVE
BEEN DOING.
REGARDING THE DATA WE FIRST
SIGNAL TO THE COMMUNITY IN
2015 WE COLLECTED COMMUNITY
INPUT IN 2016 AND 2018 ALL
THAT LED TO THE DRAFT RELEASED
A PUBLIC COMMENT AND
IMPORTANTLY WE ISSUED A LOT OF
REQUEST FOR INFORMATION
RECEIVING OVER 200 COMMENTS
FROM UNIVERSITIES AND
RESEARCHERS AT LEAST 23
PROFESSIONAL SOCIETIES
RECOGNIZING THAT EVERYONE
ENJOYS THE FEDERAL REGISTER HE
NOTICED WE WENT OUT AROUND THE
COUNTRY MEETING WITH REGIONAL
COMMUNITY PEOPLE LIKE
LIBRARIANS TO SEE HOW THEY
REALLY HAVE INFRASTRUCTURE IN
PLACE.
ALSO TO ENSURE WERE MEETING
THE NEEDS OF TRIBAL
CONSULTATION THIS LED TO THE
FINAL POLICY BEING PUBLISHED
OCTOBER 2022 YEARS AGO TO HAVE
AN EFFECTIVE DATE OF TWO YEARS
TO WORK WITH THE COMMUNITY
WHAT THE GOALS WERE AND WHAT
TYPE OF RESOURCES WOULD BE
HELPFUL HERE WITH
IMPLEMENTATION.
WE HELD VIRTUAL SEMINARS AND
MET OUR PARTNERS AT THE
NATIONAL ACADEMY FOR PROTOCOLS
FOR SHARING AND INFRASTRUCTURE
INCENTIVES AND CREDIT FOR DATA
ARE STILL IMPORTANT THESE
WEBINARS HAVE BEEN AMAZINGLY
ATTENDED.
5000 PER WEBINAR WHICH IS
AMAZING SO WE HEARD THE NEED
FOR RESOURCES AROUND SOME
CLARITY IN TERMS OF WHAT MAKES
A GOOD PLAN OR REPOSITORY HOW
DO YOU PROTECT INFORMATION
SHARING AND WHAT TO DO?
I'M SO PROUD TO SAY THIS IS
BEEN A ROBUST EFFORT FOR SOME
PERIOD OF TIME THAT WE WILL
TALK ABOUT THAT OUR PARTNERS
ALSO WORKED REALLY HARD AND
ENGAGED BEYOND POSTDOC AND
GRADUATE STUDENTS AND ISSUING
PRIZES IN PARTNERSHIP WITH
INVESTIGATORS SO I ENCOURAGE
YOU TO CHECK THOSE OUT THAT IS
THE START OF THE DATA
MANAGEMENT SHARING POLICY ALSO
THE CURRENT PUBLIC ACCESS
POLICY RUN PREDOMINANTLY OUT
OF THE NATIONAL LIBRARY.
WE HAVE THE REQUIREMENT TO
KNOW ALL INVESTIGATORS FUNDED
BY NIH TO SUBMIT TO HAVE HAD
CENTRAL AND MUST BE PUBLICLY
AVAILABLE NO LATER 12 MONTHS
AFTER THE OFFICIAL DATE OF
PUBLICATION THIS IS BEEN THE
STATUS QUO FOR A DECADE WE ARE
PLEASED TO SAY WE ARE OVER
ONE.4 MILLION A SUPPORTED
ARTICLES HAVING THE PREMIER
DATABASE ONE THIRD OF THOSE
ARE ALREADY SUBMITTED WE ARE
WELL ON OUR WAY WITH THE ICP
MEMO REGARDING THE DATA
MANAGEMENT SHARING POLICY HOW
WE DEVELOP THAT BUT THE BASIC
REQUIREMENTS INVESTIGATORS ARE
TO SUBMIT A PLAN DATA SHARING
SHOULD BE CONSIDERED A DEFAULT
OVER LEGAL RESTRICTIONS SO WE
EXPECT RESEARCHERS TO MAXIMIZE
DATA SHARED WITH THE IMPORTANT
CAVEAT OF THE POLICY IS ALL
DATA SHOULD BE MANAGEMENT DOES
NOT HAVE TO BE SHARED THERE IS
A CLEAR DEFINITION OF
SCIENTIFIC DATA TO REPLICATE
FOR THOSE FINDINGS.
I ENCOURAGE YOU WITH THAT
SHARING POLICY WITH THE
ADVISORY COUNCIL IS SOMETHING
REFERRED SEVERAL TIMES AT THIS
POINT DOCTOR LAUER'S OFFICE
HAS MADE AN AMAZING ONE-STOP
SHOP FOR ALL OF THIS
INFORMATION WE ENCOURAGE YOU
TO CHECK THAT OUT.
IN TERMS OF MOVING FORWARD, WE
BELIEVE THE DATA SHARING
POLICY HAS GOTTEN IS OFF TO A
GREAT START.
WE INTEND TO PUT OUT A PLAN
HOW TO SATISFY THOSE
REQUIREMENTS TO BE SHARED FOR
PUBLIC COMMENT.
THE PLAN IS DUE TO OS STP IN
FEBRUARY.
WE DO NOT PLAN TO PUT OUT A
NEW ACCESS POLICY IN FEBRUARY
BUT SEE CAN SEE THE BEST WAY
TO IMPLEMENT THOSE POLICY
GOALS.
YOU WILL SEE WE INTEND TO HAVE
REVISED ACCESS POLICY BY DECEMBt
20, 25 GIVING US TIME TO
CONSULT WITH THE COMMUNITY AND
GET THE COMMUNITY READY.
REGARDING PERSISTENT
IDENTIFIERS THAT IS AN
IMPORTANT TOPIC FOR EVERYONE'S
WE ARE UNDERGOING A LOT OF
STAKEHOLDER SESSIONS SO STAY
TUNED.
ALL OF THIS IS GOOD WE HAVE
POLICIES WE ARE IMPLEMENTING
THAT THIS SUPPORTS THE
INFRASTRUCTURE FOR OUR GOALS.
SO I WILL TURN IT OVER TO
PATTY.
>>FROM THE NATIONAL LIBRARY
OF MEDICINE THANK YOU FOR
ACKNOWLEDGING THE WORK THAT
HAS BEEN HAPPENING AT AND LM
WITH PUBLIC ACCESS AS LONG AS
DATA SHARING GOING WITH BRIDE
NIH ACTIVITIES I WOULD LIKE TO
BRING TO YOUR ATTENTION THAT
PUB MED CENTRAL IS A
REPOSITORY ALMOST TWO THIRDS
OF THE ARTICLES PUBLISHED IN
THE LAST YEARS HAVE EITHER
DATA ACCESSIBILITY PLAN IF IT
IS SMALL ENOUGH SO IT HAS
BECOME AN IMPORTANT PLACE TO
SUPPORT DATA SHARING AND
INVESTIGATORS ARE ON BOARD
WITH THIS.
TALKING TODAY ABOUT THREE
THINGS ARE DOING AT NIH TO
FOSTER THE ABILITY TO SHARE
DATA.
PURSUANT TO EASE THE
ADMINISTRATIVE BURDEN ALSO
ENHANCE ADMINISTRATIVE
ACTIVITIES TO HELP
PARTICIPANTS SHARE THEIR DATA
AND THE THIRD IS WE ARE
STREAMLINING ACCESS TO MANAGE
THE SECURITY OF DATA.
BEGINNING WITH THE FIRST ONE
TO EASE THE ADMINISTRATIVE
BURDEN OF THE DATA WE BELIEVE
THE BEST STRATEGY TO
FACILITATE COMMUNITIES OF BEST
PRACTICE BIG PICTURE GOALS ARE
TO WORK WITH COMMUNITIES
ACROSS THE NIH WE MUST DEAL
WITH TO ESTABLISH APPROPRIATE
METADATA THE PRESCRIPTIONS OF
THE DATA SET.
MOST IMPORTANT TO LOCATING A
DATA SET IS HAVING GOOD
DESCRIPTIONS OF WHAT IS
PRESENT WE ARE DEVELOPING
BREASTS ON —- BEST PRACTICES
FOR DATA AND DATA SHARING
TRADING AND EDUCATING
RESEARCHERS IN THE IMPORTANCE
OF DATA SHARING FOCUSING ON
IMPROVING DISCOVERABILITY FOR
WHAT REFER TO AS A GENERAL
REPOSITORY THAT IS AN ENTITY
MULTIPLE LINES OF RESEARCH CAN
EXIST IN THE SAME REPOSITORY
SUCH AS THE BRAIN INITIATIVES
ON THE SEQUENCE REPOSITORY
THIS IS FOCUSED ON KIND OF
DATA OR PROJECT BOTH WOULD BE
NECESSARY TO REEF TO FULFILL
OUR ACCOUNT SO WE HAVE TO USE
THAT DATA SO WE ARE PROVIDING
WAYS TO INCENTIVIZE USE OF
DATA.
WE HAVE RELEASED AS OF 2022 A
NOTICE OF SPECIAL INTEREST TO
SUPPORT EXISTING REPOSITORIES
AND WITH THE INTEROPERABLE AND
ENTRUSTED THE CHARACTER WITH
THE PERMANENT AND
SUSTAINABILITY SO WE HAVE A
NOTICE OF SPECIAL INTEREST WE
ARE LOOKING FOR RESEARCH TO
BECOME FAIR AND TRUSTABLE THIS
IS REFERRED TO THE GRAY
INITIATIVE AND WITH THAT
ECOSYSTEM INITIATIVE ON THE
SCREEN IN FRONT OF YOU SO
THESE ARE ALL TWO DIFFERENT
COMMUNITIES AND SO THAT
RESEARCHERS HAVE TOOLS THEY
CAN USE AND THEN TO SEE WHO DO
THEY FIT WITH AND THEN TO
PROVIDE THE EDUCATION AND
SUPPORT.
WITH THAT INVESTIGATOR OF THE
FUTURE MAY NOT KNOW EXACTLY
WHICH DATA '-APOSTROPHE BE
INTERESTED IN WHAT THE
SPECIALIZED SEARCH STRATEGY TO
FIND THE MOST APPROPRIATE
REPOSITORY FOR THIS PERSON.
NEXT SLIDE.
>>ANY AGES DOING ITS PART TO
STREAMLINE ACCESS TO MAINTAIN
SECURITY THIS IS PART OF THE
ADMINISTRATIVE STRATEGY.
BIG PICTURE GOALS ARE TO
DEVELOP TO ASSIST IN THE
APPROACH TO OPEN DATA WE HAVE
SEVERAL ACTIVITIES THAT WE
CARRIED OUT BETWEEN 2020
THROUGH 2022 WITH A CONTROLLED
ACCESS DATA ECOSYSTEM AND
SERVICES.
WE RECOGNIZE NIH HAS A
RESPONSIBILITY TO MAINTAIN THE
SECURITY AN APPROPRIATE ACCESS
WHETHER STEWARDED BY THE NIH
ARE PHYSICALLY HELD BY THE NIH
IN ORDER TO DO THIS WE MUST
FIRST DEVELOP A SINGLE POLICY
FRAMEWORK THAT GOVERNS DATA
ACCESS RIGHT NOW WE HAVE 22
DIFFERENT ACCESS THAT IS
FACILITATED THAT CONTROLLED
ACCESS DATA SO THAT IT IS
STREAMLINED AND THEN AN EASIER
WAY TO ACCESS THIS INFORMATION
FROM THE RELATED DOCUMENTS
WITH THAT REQUEST TO ACCESS
DATA IN PARTICULAR WE
UNDERSTAND THAT THEY WILL BE
DOING.
WE ALSO PLAN TO STREAMLINE THE
ACCESS PROCESS TO AN AUTOMATED
WEB-BASED APPROACH TO MUCH
IMPROVE WHEN ACCESSING DATA
AND TRACKING.
TO FACILITATE GREATER EFFORTS
TO PROTECT PARTICIPANTS FOR
REAFFIRMED IDENTIFICATION WHEN
DATA FROM MORE THAN ONE
RESOURCE IS USED TO ALLOW FOR
WE IDENTIFICATION AND WHAT THE
FUTURE USE AND RESPONSIBLE USE
OF DATA SCHEMATICALLY WHAT WE
ARE BUILDING AT THE NIH IT IS
A DATA STATION THAT I ONCE
DEPOSITED DATA TO THE
DEPOSITORY ARE WANTS TO ACCESS
THE DATA AS A SINGLE POINT OF
ACCESS WITH THE POLICIES AND
DOCUMENTS TO STREAMLINE TO
ENSURE PARTICIPANTS SECURITY
SO CRITICAL COMMITMENT ON OUR
PART.
ALSO MANY DATA ACCESS
RESPONSIBILITIES REQUIRE
INSTITUTIONAL AGREEMENTS AS
WELL AS INDIVIDUAL
INVESTIGATOR AGREEMENTS.
AT THIS POINT TO STREAMLINE
ACCESS TO MAINTAIN SECURITY
FOR PARTICIPANT DATA WE ARE
BUILDING A COMPREHENSIVE
COMPILING DATA ACCESS
AGREEMENTS AND THE TERMS OF
ACCESS.
WE LIKE THESE TO BE
STANDARDIZED BECAUSE YOU
RECOGNIZE DATA USED BY
INVESTIGATORS FOR MULTIPLE
INSTITUTES AND CENTERS SO THAT
IS A GREAT ASSISTANCE
UNDERTAKING A PILOT STUDY TO
INCREASE HOW THOSE BEST DATA
DECISION-MAKING PROCESS RIGHT
NOW WE COULD GO THROUGH FIVE
OR SIX OR SEVEN STEPS WHICH
CAN CAUSE UNNECESSARY DELAYS
IN THE RESEARCH PROCESS.
WE ARE WORKING WITH THE CENTER
FOR INFORMATION TECHNOLOGY TO
UPDATE THE SECURITY PRACTICES
FOR CONTROLLED ACCESS INCLUDE
MAKING SURE THE EFFECTIVE USE
OF INDIVIDUAL CONTROL THE
AUTHENTICATION SERVICE A
TOKENIZATION PROCESS TO MAKE
SURE THE INDIVIDUAL
INVESTIGATOR HAS THE RIGHT TO
ONLY RELEVANT DATA SETS I'M BE
HAPPY TO TALK ABOUT THIS MORE
IN THE Q&A.
>>WE TALKED ABOUT THE US
GOVERNMENT POLICY PRIORITIES
STRIVING TO MAKE SCIENTIFIC
DATA AND RESULTS AS OPEN AS
POSSIBLE AND NIH IS ALREADY
TAKEN AMAZING STEPS TO GET US
OFF AND RUNNING TO MEET THE
FEDERAL GOVERNMENT BY EXAMPLE
TO TAKE A PROACTIVE APPROACH
THAT WE HAVE SPENT THINKING
THROUGH THE ISSUES.
WE TALKED A LOT ABOUT THAT AND
THE INFRASTRUCTURE BUT I WANT
YOU TO HEAR ABOUT THE EFFORTS
WE ARE DOING TO ANTICIPATE TO
KEEP HER CELLS READY WHAT'S
COMING DOWN THE LINE SO WHAT'S
VERY EXCITING FOR OUR TEAM IS
THINKING THROUGH HOW THE
FUTURE OF SCIENCE OF
INFORMATION SHARING HOW DO
PEOPLE FEEL ABOUT THEIR DATA
IN THE OPEN DATA ECOSYSTEM?
HOW DO PEOPLE THINK ABOUT
THEIR DATA SUCH AS DIGITAL
HEALTH AND SOCIAL MEDIA MANY
HAVE BIOMETRIC DEVICES THERE
IS NEW TYPES OF ANALYSIS WHICH
IS AN ALGORITHM THAT CAN BE
VERY REVOLUTIONARY FOR
HEALTHCARE WE STILL DON'T KNOW
WHERE THE BIASES INTERFERING
THAT THOSE NEW TYPES OF DATA
LINKAGE AND AGGREGATION WHICH
IS CRITICALLY IMPORTANT FOR
PUBLIC HEALTH SO HOW DO
POLICYMAKERS PRIORITIZE
PARTICIPANT TO ENSURE THAT
SCIENCE IS MOVING FORWARD SO
WE PILOT THE NOVEL AND
EXCEPTIONAL ADVISORY COMMITTEE
AND WHAT WE ARE DOING IS GOING
BEYOND THE BELTWAY WITH
RESEARCH QUESTIONS SO WHAT ARE
WE TRYING TO DO WITH THIS NEW
TYPE OF DATA AND APPROACH?
GOING AFTER THE COMMUNITY TO
SAY HERE IS THE POTENTIAL RISK
HOW DOES THIS INPUT MATTER TO
YOU AND REALLY TO HEAR FROM
COMMUNITIES TO UNDERSTAND
WHERE THEIR THOUGHTS ARE.
WE JUST RECENTLY LAUNCHED THE
COMMUNITY CONVERSATION AROUND
THE COUNTRY IN THE WESTERN
PART OF THE COUNTRY SO HAVING
SMALL GROUP BREAKOUTS AND
WORKING THROUGH A BIG PUBLIC
DEBRIEF SESSION AND HOW THAT
HELPS POLICYMAKING IN THE
FUTURE AND HOW THIS WILL
INFORM OUR OPEN DATA ECOSYSTEM
MOVING FORWARD TO ENSURE WE
ARE KEEPING THE PUBLIC AND
PARTICIPANTS ENGAGED MOVING
FORWARD AND REALLY WANT TO
ENGAGE YOU ALL KNOWING THAT WE
HAVE THESE POLICY DIRECTIVES
IN PLACE AND MOVING FORWARD
WHAT DOES THE FUTURE LOOK LIKE
AND TO FACILITATE THE VALUE
SHARING IS NOT ENOUGH IT'S
IMPORTANT TO HAVE VALUABLE
DATA THAT IS ACCESSIBLE AND
REUSABLE.
ALSO WORKING ON REALLY TO
ENABLE PARTNERS AND WHAT
INCENTIVES CAN WE PROMOTE WITH
A HIGH PUBLISHING VALUE SEE
THESE ARE THE QUESTIONS BUT
BEFORE OPENING UP REALLY WHO
HAS BEEN AT THE FOREFRONT
WORKING ON THESE ISSUES.
>>WE HAVE THE OPPORTUNITY TO
DISCUSS WITH YOU LAST JUNE
WHERE WE ARE GOING WITH THE
ROLLOUT AND IMPLEMENTATION OF
THE DATA MANAGEMENT SHARING
POLICY.
AS HAS BEEN POINTED OUT THERE
HAS BEEN TREMENDOUS AMOUNT OF
OUTREACH THE LAST FEW MONTHS
DOZENS OF TALKS AND WEBINARS
ATTENDED BY 5000 PEOPLE A
PIECE.
LOTS OF GOOD QUESTIONS THAT
HAVE COME IN.
THE WEBSITE WE CONTINUE TO
MAINTAIN THAT AS A LIVING SITE
SO ONE OF THE ITEMS WE JUST
PUT UP OUR SAMPLE PLANS AND WE
ANTICIPATE PUTTING UP MORE
OVER TIME AS WE SEE MORE AND
MORE GOOD EXAMPLES.
A VERY EXCITING PROJECT GOING
ON WITH THE FTP THIS IS A
LONG-STANDING ONGOING PROJECT
WE HAVE BEEN WORKING ON WITH
THE NATIONAL ACADEMIES.
THINKING ABOUT WAYS TO DEVELOP
DATA MANAGEMENT AND SHARING
THAT IS STRUCTURED AND EASY TO
PUT TOGETHER AND WHERE THEY
COULD BE MORE EASILY ANALYZED
AND ACCESSIBLE.
SO WE HAVE A JOINT GROUP OF
PEOPLE FROM ACADEMIA AND
ADMINISTRATORS AND OUR OWN
STAFF WORKING ON DEVELOPING
VARIOUS STRUCTURE TYPES OF
DATA MANAGEMENT PLANS WITH THE
EFFORTS TO TEST DRIVE THEM TO
SEE HOW WELL THEY WORK AND
THIS STARTED A FEW MONTHS AGO
AND WE ANTICIPATE WILL GO ON
FOR AT LEAST ANOTHER FOUR
THROUGH SIX MONTHS IF NOT
LONGER.
THE LAST THING I WILL MENTION
SEEING ENGAGEMENT BY THE
COMMUNITY ITSELF IN ONE
EXAMPLE THAT WAS PUBLISHED A
MONTH OR TWO AGO MAYBE TWO
MONTHS AGO THAT WAS ENTITLED
TEN SIMPLE RULES FOR
IMPLEMENTING THE SHARING
POLICIES.
A PAPER WAS PUT TOGETHER BY
LIBRARIANS AND IT IS A NICE
PIECE.
AND EVEN THOUGH IT'S WRITTEN
TO SPECIFIC IT IS APPLICABLE
TO VIRTUALLY ALL SITES.
THINKS ONE —- THANK YOU.
>>I KNOW SUSAN WAS NOT
AVAILABLE TODAY AND I KNOW YOU
HAVE A BUNCH OF QUESTIONS BUT
I SEE TWO HANDS SO FAR.
>>THANK YOU EVERYONE THIS IS
AMAZING WORK AND I CANNOT TELL
YOU HOW INFLUENTIAL IT CAN BE
BETWEEN MACHINE LEARNING AND
BIOMEDICAL RESEARCH.
I HAVE TWO QUESTIONS AND
COMMENTS.
FROM MY EXPERIENCE COMING FROM
THE OTHER SIDE OF THE DATA IN
TERMS OF MACHINE LEARNING AND
RESEARCHERS I THINK THE MOST
HELPFUL DATA IS MEASUREMENT
DATA.
IT DOES NOT HAVE A HUMAN ENTRY
BUT LET ME GIVE YOU EXAMPLES.
EXAMPLES OF SEQUENCING DATA
LIKE GENOMIC DATA LESSON
SOMEBODY SAYING IF THEY HAVE A
PARTICULAR SEQUENCE OR NOT EEG
DATA, PSG DATA AND AS AN
AMAZING RESOURCE WHO HAS PSG
DATA SET FOR ME AND ANOTHER
RESEARCHER JUST TO GIVE YOU AN
IDEA MAY HAVE JUST A FEW
MONTHS AGO BASED ON DATA FROM
THE RESOURCE IN ADDITION TO
OTHER COLLECTIVE DATA AND STOP
THAT FROM NOCTURNAL BLEEDING
YOU WOULDN'T THINK IT IS
POSSIBLE THAT THEN YOU
DISCOVER NEW THINGS.
I GIVE YOU THIS AS AN EXAMPLE
OF THE POWER OF THE DATA
COMING DIRECTLY FROM PATIENTS
I WOULD LOVE TO HEAR FROM YOU
HOW MUCH EMPHASIS IS GIVEN TO
THAT AND I ENCOURAGE YOU TO
THINK OF THE DATA AND ALSO ON
THE TSG VERY IMPORTANT IT
COULD BE ONE CLASS OF DATA
THEN SEQUENCING THE IMAGING
DATA THAT IS AMAZINGLY HELPFUL.
>>I WILL START.
THIS IS SPOT ON AND ONE
EXAMPLE I HAD THE OPPORTUNITY
TO WORK ON A NUMBER OF YEARS
AGO TO COMBINE DATA WHICH IS
THE PROJECTS WITH MULTIPLE
TRIALS IN A HIGHLY SYSTEMATIC
WAY AND ALL THE WOMEN INVOLVED
IN THOSE STUDIES I AM A
CARDIOLOGIST SO THIS GETS ME
EXCITED.
EACH ELECTROCARDIOGRAM HAD
SOMEWHERE BETWEEN 501,000
PIECES OF DATA ALONG WITH IT
SO WE USE SOME MACHINE
LEARNING METHODS TO COMBINE
THE ECG DATA ALONG WITH THE
VAST AMOUNTS OF CLINICAL DATA
COLLECTED SO ONE OF THE THINGS
WE FOUND IS THAT VARIABILITY
AS DISCOVERED ON ONE MINUTE
ECG AT THE MOST POWERFUL
PREDICTOR OF LONG-TERM AND IT
DOES MAKE SENSE SO I THINK
YOUR COMMENT IS SPOT ON FOR
FURTHER WORK.
>>I DO WANT TO ADD ONE SMALL
RELATED THING I ENCOURAGE YOU
TO FOCUS ON THE CLINICAL PAST
DATA FIRST BECAUSE WE ALL
THINK WEARABLE DATA IS
AMAZINGLY HELPFUL AND WILL
CHANGE THINGS BUT EFFECTIVELY
WE HAVE BEEN WEARING DATA WITH
GOOGLE AND APPLE AND ALL THE
BIG TECH COMPANIES FOR MORE
THAN A DECADE.
AND NOT MUCH HAS COME OUT OF
IT AND THE REASON IS THE NOISE
IN COMPARISON TO THE SIGNAL IS
VERY HIGH.
IN COMPARISON TO CLINICAL DATA
THAT EEG AND MRI THAT DATA
SIGNAL TO NOISE IS VERY HIGH.
>>IF I COULD COMMENT ON THREE
CRITICAL PIECES BUT THIS IS AN
EXAMPLE WHERE METADATA IS
EXTREMELY IMPORTANT BECAUSE
THE MACHINE CAPTURING THE DATA
CAN ALTER THE INTERPRETABILITY
SO WE LOOK FORWARD TO HOW TO
PROPERLY CHARACTERIZE SO WE
NEED TO KNOW THE MAKE AND THE
MODEL.
THAT LEADS TO THE SECOND PART
OF THE JOURNEY WE NEED TO
UNDERSTAND TO WHAT EXTENT IS
THE RAW DATA APPROPRIATE TO
PRESERVE AS OPPOSED TO A
SPECIFIC FINDING IN A RESEARCH
STUDY?
WE DON'T HAVE THOSE ANSWERS
AND MANY STRATEGIES TO LOOK AT
LOOKING AT THE SIZE OF DATA
RESOURCES.
SO WE LEARN THROUGH OUR
COMMITTEE HAVING SEVERAL
COMMUNITY MEMBER ENGAGEMENTS
PEOPLE ARE WILLING TO HAVE THE
DATA SHARED BUT THEY WANT TO
UNDERSTAND HOW IT WILL BE USED
AND THE POTENTIAL FOR
INADVERTENT IDENTIFICATION
FROM SOME OF THE SIGNAL DATA
IS NOT SMALL.
IT'S CRITICAL THE NIH ENGAGE
WITH DATA FOCUSED RESEARCH TO
LOOK AT ETHICAL WAYS TO
PRESERVE PATIENT PRIVACY.
THANK YOU.
>>LET ME KNOW IF THERE IS
ANYWAY I CAN HELP THANK YOU
AGAIN.
THIS IS AMAZING.
>>MY QUESTION IS ABOUT OPEN
ACCESS PUBLICATION AND OTHER
INSTITUTIONS ACROSS THE WORLD
BUT DO YOU HAVE ANY DATA FROM
THE OPEN ACCESS FEES?
AND THE REASON I'M ASKING
THERE IS A SUBSTANTIAL
ESCALATION THAT WE ARE PAYING
A LOT OF MONEY TO SUPPORT
PUBLISHING BUT IT IS AT THE
EXPENSE I THINK IF WE DON'T
HAVE GREAT FUNDING A FOUR OR
$5000 TO GET THE PAPER
PUBLISHED DOESN'T MAKE THAT
ACCESSIBLE SO HOW ARE WE
THINKING ABOUT THAT?
>>I WILL DO FOR THE COST
CONVERSATION TO THOSE WHO RUN
THIS BY DOING TO EMPHASIZE YOU
UNDERSTAND THE NUANCE WE SAY
THE PUBLIC ACCESS POLICY THAT
IS NOT OUR POSITION TO DICTATE
SO OUR POLICIES ARE ABOUT
ACCESS AND WITHIN PUBMED
CENTRAL FROM THE INVESTIGATOR
OR THE JOURNAL PUBLISHER.
SO IN TERMS OF PUBLIC ACCESS
BUT IN TERMS OF OPEN ACCESS
AND WITH THAT COST I WILL TURN
IT OVER TO PATTY AND MIKE.
>>WE DO ALLOW OPEN ACCESS
COST.
WE DON'T HAVE THAT AS A
STRUCTURED DATA FIELD BUT IT
DOES REPRESENT A RELATIVELY
SMALL PROPORTION OF COST.
PATTY CAN EXPAND THAT OUR
UNDERSTANDING IS A VERY LARGE
PORTION OF NIH PUBLICATIONS
ARE OPEN ACCESS SO THIS IS
ALREADY PART OF THE EXISTING.
>>YES ALL NIH PUBLICATIONS
RESEARCH-BASED SUBMITTED TO
PUBMED CENTRAL EITHER AS A
MANUSCRIPT RESIN AUTHOR
SUBMITTED MANUSCRIPT AND IT IS
APPROXIMATELY ONE THIRD OF THE
MANUSCRIPT COMING UP NOW
THROUGH OPEN ACCESS JOURNALS.
IT ALSO INCLUDES A NUMBER OF
THE MEMBERS OF PUBMED CENTRAL
FOR THE HIGH QUALITY OPEN
ACCESS THAT FUNDAMENTALLY FROM
THE SCIENTIFIC COMMUNICATION
PROCESS WORKING THROUGH OUR
FRIENDS TO MEET WITH THE
PUBLISHING COMMUNITY TO
EXCHANGE IDEAS WE ALL KNOW
THAT CONCERNS AND HOW RADICAL
THAT SEEMS BUT YET WE DON'T
WANT TO REMOVE THE OPPORTUNITY
FOR THE BUSINESS YOU WANT THE
PARTNERSHIP FOR WHAT WE
CURRENTLY HAVE.
>>THAT'S GREAT AND WHAT I
ANTICIPATED HEARING THOSE FEES
ARE PROBABLY SMALL FROM NON-
GRANT FUNDED RESEARCH SO THAT
IS SOMETHING TO KEEP IN MIND
BECAUSE YOU HAVE SO MUCH
IMPACT ABOUT THE BALANCE
BETWEEN THE TWO.
>>THERE IS ANALYSIS AND HOW
THAT IS DISPROPORTIONATELY
USED WITH AGENDAS OF THIS IS
WHY WE DIDN'T COME OUT WITH A
BRAND-NEW POLICY BUT THEN TO
UNDERSTAND THOSE MEASURES SO
THAT'S WHERE WE WILL REALLY BE
LOOKING TO ENSURE EQUITY.
>>SO MY QUESTION HAS THREE
COMPONENTS.
SO THE DATA WITH 500 OR 1000
DATA POINTS, SO THE AMOUNT OF
DATA WE ARE COLLECTING IS
MASSIVE.
SO HOW ARE WE STORING DATA OR
MOVING THAT AROUND OR
ACCESSING THAT?
HOW LONG SHOULD IT STAY AROUND
AND DOES THE REST OF THE DATA
GO ONLINE?
WITH THAT ORIGINAL DATA AND
HOW MUCH ACCESS.
BUT THE SECOND QUESTION EVEN
THINKING OF MY OWN LAB I'VE
GONE BACK THE LAST FEW YEARS
SO THE IDEA THAT A POSTDOC
COULD COLLECT A SERIES OF DATA
TO NAVIGATING ISSUES DO WE
NAME THAT FRONTAL CORTEX QUICK
SO GIVEN THE IDEAS TO HAVE A
COMMUNITY STANDARD HOW WE
THINKING OF BUILDING AND
ORGANIZING DATA HOW DO WE
THINK ABOUT DEVELOPING THOSE
COMMUNITY STANDARDS AND HOW
THIS IMPACTS YOUNG SCIENTIST
AND TRAINEES QUICK.
>>SO WE REALIZE IT'S USEFUL
SO DO WE ASKED THOSE
EXPERIMENTAL QUESTIONS SO
THAT'S ALL WRAPPED INTO THE
SAME DATA SET AND THEN TO
ANALYZE THAT IN A SECOND WAY
SO WHAT DOES IT MEAN IF WE
SHARE THAT DATA AND THAT
IMPACT DOES THIS INCENTIVIZE
US TO KEEP IT SEGMENTED EARLY
ON SO HELPING INVESTIGATORS
AND YOUNG SCIENTIST.
>>I WILL TAKE A STAB THESE
ARE GRAY'S QUESTIONS BUT
SHARING DATA PRESENTS
TREMENDOUS OPPORTUNITIES AND I
HAD THE OPPORTUNITY 25 YEARS
AGO TO TAKE ADVANTAGE AND TO
GET SOME INTERESTING WORK
PUBLISHED AT A TIME FROM OUR
OWN RESEARCH PROGRAM AND ALSO
TO SEE THE DATA THAT'S PUT
TOGETHER AND THAT WOULD BE A
GOOD EXAMPLE FOR US.
THAT'S ANOTHER REALLY GOOD
POINT MAKING DATA AVAILABLE
PRESENTS A TREMENDOUS
OPPORTUNITY FOR EARLY CAREER
INVESTIGATORS.
ON A TOTALLY DIFFERENT TOPIC
THERE ARE A WIDE VARIETY OF
REPOSITORY MODELS AVAILABLE
RANGING FROM PUBMED CENTRAL
FOR RELATIVELY SMALL DATA SETS
OR METADATA SO THAT STRIDES
INITIATIVE HAS BEEN
SPEARHEADED THAT ENABLES
PEOPLE TO PUT THOSE METADATA
SETS AND ACCESS INTO
SUPERCOMPUTING AND FACILITIES
AND EXPERTISE.
WHAT YOU ARE POINTING OUT AS
THIS EVOLVES OVER TIME WE WANT
THE SET UP IN SUCH A WAY.
>>I'D BE WILLING TO TAKE THIS
OFF-LINE.
WORKING SPECIFICALLY AROUND
THE INITIATIVE BECAUSE WHAT
HAPPENS WILL BE PHENOMENAL.
THREE KEY POINTS AND TO MAKE
BETTER WAYS TO ORGANIZE DATA
SO IF THEY CALL IT FRONTAL
WHATEVER WE CAN SAY THEY ARE
SIMILAR WITH A MUCH BETTER USE
OF LIBRARIANS BECAUSE DUMPING
EVERY PIECE OF DATA WILL LEAVE
US WITH THE DOWNSTREAM
CHALLENGE AND WE NEED TO DO
MUCH BETTER AT DATA HYGIENE.
AND THE THIRD PIECE IS AS WE
MOVE FORWARD IF I GIVE YOU MY
FLOPPY DISK IN YOU GIVE ME
YOURS AND NOW MEANS COMING TO
THE SEEMS ARE ON —- SAME SPOT
SO THE CONCEPT OF SHARING IS
GROWING.
THANK YOU.
>>THERE NEEDS TO BE SOME
TRAINING DONE.
>>THIS IS THE POINT TO
DEVELOP A PLAN IT DOESN'T SAY
SHARE YOUR DATA BUT WHERE ARE
THE REPOSITORIES?
SO THEN YOU CAN LOOK AT YOUR
COLLEAGUES AND WE CAN ACTUALLY
START COMMUNITY ALIGNMENTS AND
THEN THEY CAN ADOPT THEIR OWN
STANDARD VERSUS MANDATING A
STANDARD OUT OF THE GATE.
>>WE ARE AT TIME BUT I WANT
TO MAKE SURE WE DO GET TO
HOWARD AND BARBARA IT'S BEEN A
GREAT DISCUSSION WE COULD
SHIFT THE PRESENTATION IN A
FEW MINUTES AND THEN WE CAN GO
INTO THE LUNCH BREAK FOR LET'S
GO TO HOWARD NEXT.
>>.
>>AND THEN TO SHARE THAT
UNDERLYING DATA TREMENDOUSLY
POWERFUL TO PULL TOGETHER
EXISTING DATA SO FULL SUPPORT
OF THIS EFFORT WITH DIFFERENT
LAYERS OF ACCESS SO THE
DEFAULT WOULD BE THAT'S GOING
TO BE PUBLISHED YOU DON'T NEED
ANY FURTHER PERMISSION TO
ACCESS UNDERLYING DATA AND
THAT GIVES EVERYTHING DELAY
BUT THEN WHEN A TRANSACTION
HAPPENS THE INVESTIGATOR IS A
SIGNING OFFICIAL.
AND THEN THAT VOICE SLOW
THINGS DOWN AND WITH THOSE
CONCERNS ABOUT PRIVACY AND
ACTUALLY TO POINT OUT THAT YOU
ARE ALREADY THERE WERE THOSE
EFFORTS AND WITH THOSE PRIVACY
STANDARDS AND TO ASK THE
UNDERLYING BIOMEDICAL QUESTION
WITHOUT DISCLOSING IDENTITY.
I HOPE THOSE STANDARDS ARE
CONSIDERED AND THAT IS THE
PRIVACY PROTECTED VERSION SO I
THAT'S USEFUL.
>>WITH RESPECT TO HOW WE MOVE
FORWARD, WE NEED TO UNDERSTAND
COMMUNITY RESOURCE DRIVEN THE
IDEA WITH THE INVESTIGATOR
COLLECTING THE DATA IN THE
FIRST PLACE WE ARE HOPING TO
PROMOTE ALL LANGUAGE AND
CONSENT FORMS AND SECONDLY WE
WILL DO EVERYTHING TO PROTECT
THE IDENTITY OF AN INDIVIDUAL
AND THEN TO ESTABLISH RACIAL
IDENTITY.
AND THAT IS A LOOK AT NEW
ALGORITHMS.
TO PUT IT DISTRIBUTED A
FASHION SO THAT DATA DOESN'T
HAVE TO BE COLLECTED.
THANK YOU.
>>JUST TO ADD IT'S WORTH
MENTIONING TO THOSE LISTENING
WE HAVE DEVELOPED A CONSENT
RESOURCE TO HELP DEVELOP
CONSENT LANGUAGE FOR DATA
SHARING.
AND THAT'S ALSO FOR TO HELP
WITH BEST PRACTICES.
>>AND ALSO LOOK AT WHAT
CONSENT LOOKS LIKE AND SHARING
IT COULDN'T BE MORE IMPORTANT.
WE THEN TALK ABOUT BOILING THE
OCEAN IT COVER SO MUCH GROUND
AND THEN TO EMPHASIZE SO WE
ARE TOTALLY AWARE AND TALKED
ABOUT IT IT WITH THAT LIVED
EXPERIENCES OF SCIENCES BUT
THERE ARE RESOURCES AND THEN
WITH THE GENOMICS WITH THE
MULTIPLE KINDS OF DATA AND THE
BRAIN INITIATIVE BUT YET I
KNOW THE ONES THAT ARE THE
MOST SUCCESSFUL MANY
INSTITUTES FIND THEMSELVES
STRUGGLING.
MY RECALL INFRASTRUCTURE WE
HAVE A BROWSER NOW WE ARE DONE
BUT WITH THIS NEW KINDS OF
DATA AND NEW WAYS TO LOOK AT
IT.
AND THAT NEEDS A WHOLE LOT OF
ENGINE.
NATALIE TO THE INVESTIGATOR
BUT TO THE NIH.
INSTANCE TO STEP BACK WHAT
WILL THIS COST AND WHERE DO WE
PUT THE MOST MUSCLE TO GET
BANG FOR OUR BUCK SO THAT THE
END OF THE DAY THIS IS A HUGE
OPPORTUNITY POTENTIALLY
PROBLEMATIC BUT IS IT TIME FOR
ANOTHER STEP BACK FOR THE
FUTURE OF DATA SCIENCE
OVERALL?
AND THE MOMENT IT HAS BEEN TEN
YEARS SINCE LARRY WAS INVOLVED
IN THE STUDY AND THINGS HAVE
CHANGED A LOT AT NIH WITH DATA
SHARING AND SCIENCE.
PARTLY TO TAKE A LOOK AND WHAT
DO WE KNOW NOW QUICK.
>>I WOULD LOVE TO TURN TO
LARRY.
>>WE HAVE BEEN TALKING ABOUT
THIS AND HAVE REALLY MOVED
MORE TOWARDS PUTTING THE DATA
SET IN PLACE.
AND EVEN FIVE YEARS AGO THE
CLOUD -BASED APPROACHES WERE
ASPIRATIONAL NOW THEY ARE NOT
IN THE REACH OF EVERYBODY THAT
MANY PEOPLE.
>>AND THERE ARE REAL ISSUES.
SO PATTY AND ANDREA HAVE BEEN
WORKING THROUGH DIGITAL
STRATEGIC PLAN AND NO DOUBT
THAT WILL INFORM BECAUSE WE
OFTEN DO EXPERIMENTS ON
OURSELVES.
AND IF THE PATIENT'S IF NOT
THEN WE TRY WAS SOMEBODY ELSE
THAT CAN YOU COMMENT QUICK.
>>I HAVE TWO COMMENTS WE ARE
SEEING COMMITTED TO DEVELOPING
NEW KINDS OF RESOURCES NIH
DOES WHAT IT DOES BEST AND THE
COMMUNITY HAS CONNECTIONS THAT
ARE ABLE TO CREATE THOSE
ANNOTATING SETS AND THE
PARTNERSHIP AS A STRATEGY.
BUT THAT DATA STRATEGY FOR NIH
COMPLEMENTS THE OFFICE OF THE
DATA SCIENCE AS WELL AS
STRATEGIC DIVERSITY AND IT
WOULD BE RELEASED TO THE
PUBLIC BUT THE KEY ASPECTS
WERE GOVERNANCE FOR SECURE
COMPUTING AND WITH THAT
ADVANCED ANALYTICS THAT HELPS
OUR OPERATIONS RUN BETTER SOME
EXCITED TO GET YOUR FEEDBACK.
>>WHEN DID YOU SAY THAT IS
COMING?
>>DIGITAL NIH SOMETIME MID
JANUARY BUT INTERNALLY IT
FOCUSES ON THE EFFORTS OF THE
NIH TO HAVE THAT ENVIRONMENT
TO BRING US FORWARD.
IN THE CHAT WE HAVE TWO LINKS
WHICH IS A RESOURCE BUILT ON
THE COLLABORATIVE INTERFACE
WITH THE COMMUNITY TO BUILD
SCIENTIFIC RESOURCE AND THEN
THE DATA SCIENCE STRATEGY TO
LOOK AT INNOVATION AND DATA
WITH THE BROAD-BASED
DIGITIZATION.
>>MAYBE WE DON'T HAVE ANY
TIME LEFT TODAY BUT.
>>WE ALWAYS WANT TO TALK
ABOUT DATA SOME OF YOU MAY
ALREADY BE AWARE OF BUT TO
ACCELERATE THE PARTNERSHIPS
PROGRAM WHICH IS A CONSORTIUM
WITH THE NUMBER OF DATA
PORTALS THAT ARE EXTRAORDINARY
NOW THEY ARE TRYING TO FIGURE
OUT HOW TO MERGE THEMSELVES TO
BENEFIT THE COMMUNITY AT
LARGE.
MAYBE WOULD BE SURPRISED WITH
THE INITIATIVE BUT THEY NEVER
TALK TO THE RESEARCHERS WHO
STUDY OPIOID USE.
THEY JUST DON'T TALK TO ONE
ANOTHER.
NOW GETTING THEM TO DEPOSIT
DATA AND THEN WE THINK THAT
WILL LEAD TO AN IMPORTANT
INSIGHT.
SO AS THE TECHNOLOGY BECOMES
MORE ECUMENICAL IT WILL BE
BIGGER AND BOLDER.
>>IT IS EXCITING IF YOU ARE
REINVENTING THE NIH.
[LAUGHTER]
>>DON'T GO THERE.
[LAUGHTER]
>>LAST COMMENT AND QUESTION.
>>SO WHAT YOU SAID ON YOUR
SIDE WAS ONE OF THE ISSUES WAS
THE COST.
>>NOT ONLY COST TO THE
INVESTIGATOR FROM THE MODULAR
GRANTS BUT ALSO COST TO THE
INSTITUTION AND I THINK THAT
IS SOMETHING THAT HAS TO BE
ADDRESSED UP FRONT THAT THE
COMMUNITY FROM WHAT I HAVE
HEARD HAS CONCERNS TALK ABOUT
INVESTIGATORS OF THE NIH BUT
THOSE WHO HAVE TO SIGNOFF ON
THE PLANS DO THEY HAVE THE
INFRASTRUCTURE TO ACTUALLY DO
THAT AND THERE'S NO INDIRECT
COST ALLOWED FOR THE
INITIATIVE?
I REALLY THINK IT IS ADDRESSED
UP FRONT YOU HAD IT ON YOUR
SLIDE BUT YOU NEVER CAME BACK
TO ITS OWN TRYING TO COME BACK
TO IT NOW.
MAYBE THIS IS TOO BIG OF AN
ISSUE BUT I THINK IT IS HUGELY
IMPORTANT.
>>FORTUNATELY THREE YEARS AGO
SPONSORING A STUDY CALLED
FORECASTING THE LIFECYCLE AND
I WILL PUT THE LINK TO IT IN
THE CHAT IT GIVES A LIFECYCLE
APPROACH AS WELL AS THE
SPREADSHEET STRATEGY SO WHAT
WE NEED TO UNDERSTAND COST
SHIFTING AS WELL AS
COST-SAVING BUT COST SHIFTING
IS WHEN WE PROVIDE ALL THE
ANALYTICS ENGINES SO WE CHANGE
WHAT PEOPLE HAVE TO PAY FOR
AND AS EXPOSED WITH THE VALUE
OF DATA THIS BE AN INCREASING
DEBATE OVER THE NEXT FIVE
YEARS WHO GETS TO LEVERAGE THE
DATA BUT THE SCIENTIFIC
STANDPOINT THE COST OF
SECURING AND SHARING DATA CAN
BE A DIRECT COST THE COST TO
REMAIN THE REPOSITORIES OVER
THE NEXT FIVE YEARS WITH ALL
THE REPOSITORIES COMING
TOGETHER.
>>SO ON THE GRANT LEVEL PART
OF THE REASON WHY WE INSISTED
ON INCLUDING THE ATTACHMENT OF
COST IN THE BUDGET
JUSTIFICATION IS TO MAKE
PEOPLE START THINKING ABOUT
THIS FROM THE BEGINNING.
SO WE DO HAVE GUIDANCE ON WHAT
IS APPROPRIATE AS WE COLLECT
MORE DATA SAMPLE AND PLANS WE
ARE ABLE TO SHARE THAT AND HOW
THE COST EVOLVE BUT THE IDEA
IS WE WANT INSTITUTIONS AND
SCIENTISTS TO THINK ABOUT THIS
UP FRONT A NUMBER OF
INSTITUTIONS HAVE DEVELOPED
THEIR OWN DATA REPOSITORIES
AND PART OF THE REASON THEY
HAVE ECONOMIES OF SCALE AND A
NUMBER OF THE FOA INSTRUCT
SCIENTISTS TO THE POSITIVE
THERE DATA.
AND THEN TO PAY FOR OVERTIME.
AND THERE IS A REASON FOR THAT
FOR THE SAKE OF LONGER-TERM
DATA SHARING.
AND AS TIME GOES ON AN EVEN
GREATER DEPTH OF
UNDERSTANDING.
>>WE MOVE ON TO THE NEXT
TOPIC TALKING ABOUT DATA AND
DATA SHARING FOR THE LAST FOUR
HOURS BUT THERE WILL
DEFINITELY BE SOME TIME TO ADD
THESE TO THE JUNE AGENDA.
SO NOW WE'VE ALL TRANSITION TO
PROVIDE A REPORT TO THE
WORKING GROUP ON DIVERSITY.
HAS A SAD GROUP WITH A SERIES
OF RECOMMENDATIONS.
AND THEN AS COCHAIR.
>>I THINK ROBBIE WILL LAUNCH
THIS.
>>AND WITH THE NEXT
PRESENTATION DOCTOR BERNARD
HAS SHOWED UPDATES WITH
INDIVIDUALS WITH DISABILITIES
SO THIS GROUP OF SUBJECT
MATTER EXPERTS HAS BEEN HARD
AT THE PAST YEAR HOW NIH MIGHT
BOLSTER THE EFFORTS WE ARE SO
APPRECIATIVE OF THEIR EFFORTS
AND HAVE LEARNED MUCH DURING
THIS PROCESS.
THE MEMBERS OF THE WORKING
GROUP ON DIVERSITY REVIEW THE
OUTPUTS OF THEIR WORK AND
ENTHUSIASTICALLY SUPPORT.
WE ARE NOW PRESENTING THIS
REPORT WHICH HAS AN EXCELLENT
SET OF SUGGESTIONS FOR YOUR
CONSIDERATION.
THE SUBGROUPS INITIAL CHARGE
FOCUSING ON THE SCIENTIFIC
WORKFORCE AND IN ORDER TO
ADDRESS THE CHARGE TO INCLUDE
RESEARCH ADDRESSING HEALTH AND
HEALTHCARE DISPARITIES AND
INCREASING THE INCLUSION OF
PEOPLE OF RESEARCH STUDIES HE
SHOULD ALSO BE NOTED THEIR
EFFORTS WERE NOT BARRIERS IT
IS THE LACK OF COMPREHENSIVE
AND RELIABLE DATA THERE ARE
DIFFERENT DEFINITIONS OF
DISABILITY AND FEASIBILITY
AMONG STUDIES.
THERE IS NOT CONSISTENT NOR
BROAD ENOUGH GATHERING OF DATA
REGARDING DISABILITIES TO
ALLOW COMPREHENSIVE ASSESSMENT
OF OPPORTUNITIES THEN GAPS AND
ENHANCEMENT OF THE SCIENTIFIC
WORKFORCE.
AND THEN NOT LIMITING THOSE
CONSIDERATIONS BUT THIS IS TO
BE APPLAUDED GIVEN THE NEED
ARTICULATED FOR MORE CAREFUL
FOCUS ON PEOPLE WITH
DISABILITIES I WILL NOW TURN
IT OVER TO MY ESTEEMED COCHAIR.
>>THANK YOU.
DOCTOR MARTIN HAS TALKED ABOUT
THE BACKGROUND FOR THIS.
THE SUBCOMMITTEE ON
DISABILITIES THAT IS
CONSTITUTED AUGUST 2021 WITH
THE TIME-LIMITED CHARGE.
WE ASKED FOR A REPORT IN A FEW
YEARS PERIOD OF TIME TO INTERN
HAVE THE DIRECTOR ADVISE HOW
BEST TO SUPPORT THE INCLUSION
OF PEOPLE WITH DISABILITIES IN
THE SCIENTIFIC WORKFORCE.
WHAT WE ARE BRINGING FORWARD
IS A SET OF SUGGESTIONS FOR
YOUR CONSIDERATION YOU CAN
CHOOSE TO MAKE THE
RECOMMENDATION AND TO MODIFY
THEM.
YOU DON'T HAVE TO ACCEPT THE
REPORT IT'S UP TO THE ACD AT
THIS POINT.
I'M SORRY I DID NOT TALK ABOUT
THE SCOPE OF THIS.
WHAT HAPPENED?
WHAT AM I DOING WRONG?
THESE ARE THE MEMBERS OF THE
COMMITTEE.
WE HAVE BROAD RANGE OF EXPERTS
OF DISABILITY AND INDIVIDUALS
LIVING WITH DISABILITIES AND
THOSE TO STUDY THE CHALLENGES
AND TO HELP DISPARITIES OF
INDIVIDUALS AND WITH THOSE NIH
STAFF MEMBERS WHO ARE ALSO
SUBJECT MATTER EXPERTS AND THE
SCOPE WAS TO LOOK AT DATA
COLLECTION FOCUSED ON THOSE
WITH DISABILITIES IN THE
SCIENTIFIC WORKFORCE, DATA ON
THE PREVALENCE OF PEOPLE OF
THOSE VARIOUS CAREER STAGES
EVIDENCE-BASED PRACTICES TO
SUPPORT THOSE AND COUNTING THE
VARIATION AND THE PROGRAMS TO
DEMONSTRATE A SUCCESS AND
PERSPECTIVES OF PEOPLE WITH
DISABILITIES.
AS NOTED THE COMMITTEE VERY
QUICKLY FELT THEY NEED A
CHARGE TO ADDRESS THE HEALTH
AND HEALTHCARE DISPARITIES OF
THE INCLUSION AND RESEARCH
STUDIES.
>>IT'S IMPORTANT TO
UNDERSTAND WHAT WE ARE
ADDRESSING THERE ARE A LOT OF
DIFFERENT DEFINITIONS BUT THE
COMMITTEE POINTED OUT THERE IS
A MEDICAL MODEL AS A DISEASE
OR IMPAIRMENT THAT CAN BE
CORRECTED THROUGH TREATMENT
AND THEN THE SOCIAL MODEL THE
COMMUNITY MUCH PREFERS THAT
FOCUSES ON DISCRIMINATORY
ATTITUDES AND OTHER BARRIERS
TO INHIBIT TO FULLY
PARTICIPATE IN SOCIETY.
THE WHO LOOKS AT DISABILITY AS
ITS OWN TERM WITH CONTEXTUAL
FACTORS PERSONAL FACTORS AND
HEALTH CONDITIONS.
AND VERY IMPORTANTLY
UNDERSTANDING THE CONCEPT OF
PEOPLE IS ON WITH THE BELIEF
PEOPLE DISABILITIES ARE FLAWED
AND LESS VALUABLE THAN
NONDISABLED PEOPLE.
YOU PROBABLY HAVE HEARD AT
SOME POINT THAT PEOPLE WITH
DISABILITIES ARE
INTELLECTUALLY INFERIOR.
SO OF COURSE THEY DESERVE OUR
PITY HISTORICALLY LANGUAGE HAS
BEEN USED TO INDICATE
DISABILITY TO CONVEY ATTITUDES
AND I WILL ADMIT MY OWN OFFICE
MADE THAT ERROR EARLY ON TALK
ABOUT DIFFERENTLY ABLED
INDIVIDUALS
HANDICAPPED, MENTALLY OR
PHYSICALLY
CHALLENGED, HANDICAPPED THE
PREFERENCE IS YOU SIMPLY SAY
PEOPLE DISABILITIES OR A
DISABLED PERSON.
AND AS MENTIONED THERE ARE A
NUMBER OF EXECUTIVE AND
LEGISLATIVE MANDATES OUT
THERE.
THAT DISTRIBUTES ON THE BASIS
OF ORGANIZATIONS THAT RECEIVE
THE FUNDING THE ADA OF 1980
MANDATES FOR DISABLED PEOPLE
AND THE AFFORDABLE CARE ACT IN
2010 TO REQUIRE THE SECRETARY
OF HHS TO HAVE DATA COLLECTION
STANDARDS FOR DEMOGRAPHIC
ASPECTS AND COMING FOR THE
STRATEGIC PLAN AND COMING FROM
NIH THE EXECUTIVE ORDER 1395
ADVANCING EQUITY FOR
UNDERSERVED COMMITTEES WITH
PEOPLE DISABILITIES.
BUT AGAIN HOPING EACH HAD AN
OPPORTUNITY IN DETAIL TO GO
BEYOND.
SO THERE IS A PROBLEM I STATED
BUT THERE ARE DATA TALKING A
VERY HIGH LEVEL AND THIS IS
MUCH GRATITUDE TO THE DOCTORS
AND THE TEAM WHO DID MUCH OF
THE DATA CRUNCHING TO THE
PUBLISHED ARTICLES AND THEN
WITH THE COMMUNITY SURVEY TO
PUBLISH THE TALKS ABOUT THE
PREVALENCE OF PEOPLE
DISABILITIES OF THE GENERAL
POPULATION SO THE 27 PERCENT
OF US ADULTS HAVING REPORTED
DISABILITIES.
SO THE SINGLE LARGEST MINORITY
POPULATION IN THE COUNTRY AND
GROWING.
DISABILITIES ARE DIVERSE.
IT CAN BE CONGENITAL AS A
GERIATRICIAN I'M VERY AWARE OF
THE SEGMENT OF THE POPULATION
OF 65 AND OLDER.
SOME ARE APPARENT AND SOME ARE
VISIBLE SOME HAVE MULTIPLE
DISABILITIES.
AND WITH THAT PREVALENCE OF
DISABILITIES ONCE YOU START
LOOKING AT PEOPLE 65 AND OLDER
BUT EVEN LOOKING AT THOSE 35
THROUGH 64 AT THE HEIGHT THE
RESEARCH PRODUCTIVITY IS
12.8 PERCENT OF THE POPULATION
REPORTED DISABILITIES AND
7 PERCENT OF UNDERGRADUATE AND
GRADUATE TRAINING SO IT'S NOT
A SIGNIFICANT PROBLEM THAT'S
AVAILABLE.
>>LOOK INTO SEXUALITY AND SO
AGAIN THE COMMUNITY SURVEY AND
THE HIGHEST PREVALENCE OF
DISABILITY BUT THE ALASKA
NATIVE POPULATION AND THE
LOWEST PREVALENCE AMONG THE
ASIAN POPULATION ALL OF THIS
VERY MUCH DEPENDED UPON THE
CULTURAL DIFFERENCES TO
SUGGEST THERE COULD BE ISSUES
THAT NEED TO BE ADDRESSED AS
WELL WE DON'T HAVE A LOT OF
THE DATA THAT COULD BE
DESIRABLE BUT WE DO KNOW FOR
INSTANCE THE AMERICAN ALASKA
NATIVE POPULATION IS THE
SMALLEST IDENTIFIED FUNDED
POPULATION HERE AT NIH BUT
FROM OTHER STUDIES WE KNOW
THOSE PUT PEOPLE AT HIGHER
RISK FOR DISABILITY RELATED
HARASSMENT SUCH AS BEING
FEMALE OR HAVING A BEHAVIORAL
DISABILITY AND WE ALSO KNOW
THAT MINORITY SERVING
INSTITUTIONS SERVE ADDITIONAL
BARRIERS OF BUILDING AND
INFRASTRUCTURE WITH A LOVELY
LIST OF REFERENCES.
FROM THE NIH DATA WE KNOW
SEVEN.7 PERCENT OF OUR
POPULATION HAS DISCLOSED A
DISABILITY IT IS A CATEGORY
CALLED TARGETED DISABILITY
THAT MEANS WHAT IS CONSIDERED
AS THESE INDIVIDUALS GET
PRIORITY.
FIVE.6 PERCENT OF THE
POPULATION OF THE TARGETED
DISABILITIES AND THAT WAS
RELATED TO THE HIRING.
SIX.5 PERCENT DON'T IDENTIFY
WITH THE VAST MAJORITY SAID
THAT THEY DON'T.
LOOKING AT THE SCIENTIFIC
WORKFORCE ON AVERAGE IT'S
ABOUT 9 PERCENT OF THE
POPULATION WITH THE PERCENTAGE
OF INDIVIDUALS GOING DOWN YOU
CAN SEE A LITTLE BLIP TO BE
ASSOCIATED WITH OLDER ADULTS
TO BE A PART AND A VERY LOW
PREVALENCE OF PRACTICING
PHYSICIANS.
>>AND THEN RESEARCHERS WITH
DISABILITIES ONLY REPRESENT
BETWEEN ONE.NINE AND ONE.2
PERCENT OF THE TOTAL FUNDED
VERSUS WHAT WE CAN SEE FROM
THE GENERAL STUDIES FROM THE
AMERICAN COMMUNITY SURVEY WITH
A HIGHER PREVALENCE OF
DISABILITY IT WAS VERY
COMPELLING TO ME TO SIT IN ON
THE DELIBERATIONS OF THE
SUBCOMMITTEE TO HEAR THE
ANECDOTES OF THE BARRIERS THAT
SCIENTIST RAN INTO WHEN THEY
DECLARE THEIR DISABILITIES WE
SUSPECT BECAUSE OF THOSE THAT
DEVELOP AS A RESULT OF THAT SO
THE GROUP POINTED OUT THERE
ARE GAPS IN THE DATA PUBLICLY
AVAILABLE WITH THAT DISABILITY
PREVALENCE AND WITH THOSE
STUDIES TO MAKE THE SUGGESTION
THAT DATA COLLECTION METHODS
HAVE BEEN ENHANCED AND
CONSISTENT WITH THOSE
DEFINITIONS AND THEN THE
SISTER AGENCIES LIVING IN
PARTICULAR WITH AN INSTITUTE
FOR DISABILITY RESEARCH WITH
SOME LOVELY PARAMETERS THEY
MAKE SUGGESTIONS OF DATA
COLLECTION IN PARTNERSHIP WITH
THE DISABILITY COMMUNITY TO
ALLOW COMPARISONS OVER TIME TO
HAVE THOSE WORKFORCE EFFORTS
SO COMPARING APPLES TO APPLES
WHICH IS NOT NECESSARILY THE
CASE.
THEY ALSO SUGGEST NIH EFFORTS
TO COLLECT THE DISABILITY DATA
ON THE RESEARCH WORKFORCE.
THAT IS INADEQUATE FOR WHAT WE
HAVE IN PLACE SO IN COMMONS
RESEARCHERS CAN ONLY
SELF-REPORT HEARING AND VISUAL
OR OTHER AND THEY FEEL WE
SHOULD LET MORE GRANULE DATA
REPRESENTATION AND TYPES OF
DISABILITIES.
SO THEY HAVE A NUMBER OF
SUGGESTIONS FOR CONSIDERATION
AND THEY START OFF SUGGESTING
THE NIH MISSION STATEMENT BE
MODIFIED AND THAT GOES AGAINST
THE VIEWPOINT THAT IT IS SEEN
AS AN ABLEST COMMENT AND THEY
SUGGEST WE RECONSIDER IT.
THEY ARE SUGGESTING THE
ESTABLISHMENT OF NIH
DISABILITY RESEARCH ALONG WITH
THE TRIBAL HEALTH AND SEX
GENDER MINORITY RESEARCH
OFFICE IS VERY IMPACTFUL TO
BRING TOGETHER ALL
CONSIDERATIONS FOR RESEARCH
AND THOSE RELATIVE TO THE
TOPICS AND WOULD LIKE TO SEE A
CONCERTED EFFORT TO BRING
TOGETHER RESEARCH RELATED TO
DISABILITIES.
ALSO THEY ARE SUGGESTING THE
ESTABLISHMENT IS A DISABILITY
ACCESS COORDINATING COMMUNITY
TO WORK WITH OTHER ENTITIES
WITHIN NIH TO BE RESPONSIBLE
FOR DIVERSITY ISSUES THEY ARE
SUGGESTING THE DEVELOPMENT OF
INTERNAL TO IDENTIFY AND
ADDRESS ANY STRUCTURAL ABLEST
AM TO PROMOTE DISABILITY
INCLUSION FOR THOSE WITHIN THE
NIH CULTURE STRUCTURE TO
ADVANCED DISABILITY AND ANTI-
ABLEST AM TO TRAINING AND
COMMUNICATION AND POLICIES AND
ACCESSIBILITY.
SIMILAR TO WHAT WE ARE DOING
WITH NIH AND ALSO LOOK AT THE
POLICY STRUCTURE WITH
OPPORTUNITIES TO PROMOTE
INCLUSION WITH NIH FUNDED
RESEARCH.
THEY WOULD LIKE TO SEE US
EXPAND EFFORTS TO THOSE
PERSPECTIVES AND THEY VERY
MUCH LIKE US TO CONDUCT
RESEARCH WITH HEALTHCARE
DISPARITIES BY DESIGNATING
PEOPLE WITH THE DISPARITY
POPULATION BY FUNDING BY
HEALTH AND HEALTHCARE
DISPARITIES BY COLLECTING DATA
WHEREVER THE DEMOGRAPHIC
INFORMATION IS COLLECTED AND
BY SUPPORTING DISABLED PEOPLE
AS RESEARCH PARTICIPANTS.
THEY GO ON TO SUGGEST THAT
DISABILITY INCLUSION AND ANTI-
ABLEST AM ARE PART OF ALL
EFFORTS AND WE MAINTAIN
ACCOUNTABILITY.
THIS IS A VERY ABRIDGED
VERSION BUT IT GIVES AN
OPPORTUNITY TO THINK ABOUT IF
YOU WOULD LIKE TO ACCEPT OR
MODIFY THE REPORT AS PRESENTED
FOR YOUR DELIBERATION.
>>DO YOU HAVE ANY QUESTIONS
OR COMMENTS?
>>I DON'T KNOW IF THIS GROUP
HAS DONE WITH THE SUBCOMMITTEE
WORKING GROUP JUST TO PROCESS
THESE ISSUES SO NORMALLY THE
PARENT COMMITTEE WE HAVE
PUBLIC MEETINGS EVERYBODY CAN
HEAR WHAT'S GOING ON THE
WORKING GROUPS TYPICALLY DO
NOT WORK PUBLICLY SO THIS IS A
SUBGROUP OF ONE OF THOSE
WORKING COMMITTEES YOU HAVE TO
FORMALLY DECIDE IF YOU WANT TO
ACCEPT THE REPORT AS DELIVERED
OR PIECES OF THE REPORT FOR
FURTHER CONSIDERATION YOU DO
HAVE A WORKING GROUP AS WELL
THAT THERE IS ADDITIONAL STAFF
I WOULD SAY I DID HAVE AN
OPPORTUNITY TO READ THE ENTIRE
REPORT IT IS EXTREMELY
COMPREHENSIVE WHICH IS A GOOD
THING AND I WOULD BE VERY
INTERESTED IN HEARING FEEDBACK
FROM THE ACD MEMBERS OF ANY
OTHER THING YOU MIGHT WANT TO
ADD TO THAT.
>>AS A POINT OF CLARIFICATION
DO THEY HAVE TO EXHORT ONE —-
ACCEPT AND ENDORSE?
>>I PRESUME THEY HAVE DONE
THAT ALREADY.
THAT IS CORRECT.
YES.
>>REBECCA?
>>SO THANK YOU FOR ALL OF THE
WORK ON THIS TOPIC.
I ALSO HAVE THE OPPORTUNITY TO
READ THE FULL REPORT AND I
PERSONALLY SUPPORT ALL OF
THESE SUGGESTIONS.
I JUST HAVE A COUPLE OF
QUESTIONS MY FIRST QUESTION IS
AS WE CREATE ANOTHER OFFICE
RELATED TO THE SPECIFIC
POPULATION THAT I WANT TO HEAR
ABOUT THAT SYNERGY AND
COMMONALITY WITH THE PARALLEL
EFFORT THAT IS HAPPENING WITH
NIH OR WHAT IS HAPPENING SO
HEARING ABOUT THE INITIATIVE
THIS MORNING THERE IS A
GROWING POPULATION DUE TO LONG
COVID WHICH COULD AFFECT THE
OVERALL SIZE AND MAKEUP OF
PEOPLE WITH DISABILITIES
MOVING FORWARD SO ARE THERE
ANY ACTIVITIES SPECIFIC TO
THAT POPULATION OR HOW THAT IS
CHANGING WITHIN THIS
INITIATIVE?
AND THE THIRD FOR MY OWN
KNOWLEDGE THERE IS A SECTION
ON IT SO THERE IS THE OFFICE
AND THE CHANGE IN THE LANGUAGE
OR TO BROADEN THE LANGUAGE FOR
HEALTH DISPARITY.
WHEN YOU BROADEN THE LANGUAGE
CAN YOU TALK SPECIFICALLY MORE
ON THE IMPLICATIONS OF THAT TO
THE CLINICAL TRIALS OF NIH
FUNDED?
ARE THERE ANY?
AND SO PROPOSING A TRIAL NOW
YOU ARE ADDRESSING THE
POPULATION AS WELL AND THE
PARALLEL QUESTION AND WHAT IS
HELP HEALTH DISPARITIES
DEVELOPED.
SO I GUESS I HAD THAT SAME
SORT OF QUESTION BROUGHT INTO
THE ELIGIBILITY.
>>SO STARTING WITH THE LAST
ONE FIRST IN ORDER TO BE
FORMALLY DECLARED THE DIRECTOR
OF THE NATIONAL INSTITUTE OF
HEALTH OF DISPARITIES SO
WITHIN THE DEPARTMENT OF HHS
HALF TO AGREE THAT THE
CATEGORY SHOULD BE INCLUDED AS
A HEALTH DISPARITIES.
MOST RECENTLY THIS IS DONE
WITH THE HEALTH AND SEXUAL
GENDER MINORITY SO THERE IS AN
ENTIRE PROCESS WITH THOSE TWO
INDIVIDUALS TO BRING FORTH THE
RECOMMENDATION TO GO TO THE
DEPARTMENT OF HHS IT IS A
PROCESS THAT WOULD TAKE TIME
IF WE DECIDE TO PURSUE THAT
RECOMMENDATION YOU COULD LOOK
AT THE ALLOCATION ONE OF TWO
WAYS.
THE PIE OF RESOURCES IS NOT
GOING IS DIVIDED ADDITIONALLY
AND ALSO AN OPPORTUNITY TO
GROW THE FIVE.
AND WITH THE NEED OF THE
ADDITIONAL WORK IN THESE AREAS
AND INDIVIDUALS WHO BELONG TO
A CURRENTLY DEFINED HEALTH
DISPARITY GROUP ARE ALSO AMONG
THOSE WHO ARE DISABLED.
SO THERE IS OVERLAP IT ISN'T
ONE OR THE OTHER.
SORRY THAT WAS LONG-WINDED BUT
IT IS A COMPLICATED PROCESS TO
GET A FORMAL HEALTH DISPARITY.
SO WITH REGARD TO A FIN OFFICE
WERE TO BE CREATED, HOW DOES
THAT OPERATIONAL LENS?
OVER THE LAST NUMBER OF YEARS
WE HAVE CREATED FUNCTIONAL
GROUPS WHICH THEN DEVELOPED
INTO SMALL OFFICES TO HELP US
WITH CERTAIN AREAS THAT
REQUIRE SOME ADDITIONAL
COORDINATION AND OVERSIGHT.
WE HAVE ALSO USED COMMITTEES
ACROSS THE AGENCY FOR THAT
PURPOSE AS WELL.
THERE ARE ADVANTAGES AND
DISADVANTAGES TO EACH APPROACH.
SOMETIMES YOU ADD TO ONE OR
THE OTHER WITH THE COMMITTEE
THAT GIVES YOU THE OPPORTUNITY
TO ENGAGE FORMALLY WITH THE
PUBLIC IN A PUBLIC SETTING SO
YOU COULD APPROACH THIS IN ONE
OF SEVERAL WAYS AND SOMETIMES
NOT MUTUALLY EXCLUSIVE.
SO IF THAT IS A RECOMMENDATION
THAT COMES FORWARD THAT COULD
BE CONSIDERED AS WELL AND THEN
WE THINK THROUGH FOR THE BEST
WAY AT THIS MOMENT IN TIME TO
UNDERSTANDING THAT WITH TIME
IT EVOLVES.
AND NOW THE THIRD PART AS A
START TO LOSE MY FACILITY WITH
REGARD TO CURRENT FUNDING
OPPORTUNITY AND TO THAT IF
THERE ARE SPECIFIC SHE WOULD
LIKE TO HIGHLIGHT ABOUT THAT.
>>QUITE HONESTLY I DON'T HAVE
THOSE NUMBERS AT MY FINGERTIPS
THAT WE HAVE HAD CONVERSATIONS
ALREADY WITH HEAD OF THE
HEALTH DISPARITIES AND I KNOW
THINKING ABOUT DESIGNATIONS
WITH THE SUBCOMMITTEE TO TAKE
ABOUT THINGS RELATED TO PEOPLE
WITH DISABILITIES AND I CAN
ALSO SAY THAT AS WE BEGIN THE
IMPLEMENTATION OF THE
STRATEGIC PLAN THERE IS NEW
OPPORTUNITIES TO ARISE AS A
RESULT SO THIS REPORT IS
COMING IN AT A REALLY GOOD
TIME BECAUSE WHAT IS THE PLAN
IN THE DIRECTION HOPING TO GO
WITH NIH IT IS ALL GOOD.
AND I SHOULD MENTION THE
COCHAIRS OF THE DISABILITIES
SUBGROUP THEY ARE ON WITH
QUESTIONS SPECIFIC TO THE
COCHAIR.
>>YOU MIGHT ASK IF THEY HAVE
ANYTHING TO ADD SINCE THEY ARE
ON THE CALL?
>>I'M HAPPY TO COMMENT FROM A
RESEARCHERS PERSPECTIVE THE
HEALTH DISPARITY DESIGNATION
OPENS OPPORTUNITIES IN THAT IS
CURRENTLY NOT AVAILABLE TO US
IN THE REPORT WE OUTLINED
CONCLUSIVELY THAT DISPARITIES
EXIST AND INEQUITIES ARE THERE
WITHOUT THAT OPPORTUNITY TO DO
SOMETHING AND THAT DESIGNATION
SUPPORTS THOSE OPPORTUNITIES.
>>ANY OTHER COMMENTS FROM THE
COCHAIR?
>>THIS IS A QUESTION OF
CLARITY OF WHAT WE ARE BEING
ASKED.
IF WE APPROVE THIS DO WE
APPROVE FORMATION OF THE
OFFICE OR THINKING ABOUT IT
MORE?
[LAUGHTER]
>>WHAT THE ACD WOULD DO IF
YOU WANT TO APPROVE THE
RECOMMENDATIONS AND TOGETHER
WITH MY TEAM WE WILL WORK
THROUGH THEM TO DECIDE WHICH
TO ACCEPT HER WHICH TO ATTEMPT
TO MODIFY OR WHAT NOT TO
ACCEPT OR SO FORTH.
SO SOMETIMES THERE IS A SINGLE
RECOMMENDATION THAT'S VERY
COMPLICATED SO ACCEPTED AT THE
MOMENT IT IS PROVIDED.
AGAIN AS REFLECTED BY THE
COMPREHENSIVE NATURE OF THE
REPORT, THERE ARE SOME
COMPLEXITIES HERE WE NEED TO
WORK THROUGH THIS VERY
CAREFULLY.
THAT THE INITIAL STEP THE
SECONDARY STEP WOULD BE TO
ACCEPT THE REPORT THEN IT
COMES TO ME AND MY COLLEAGUES
HERE.
>>THIS IS CLEARLY A VERY
IMPORTANT ISSUE IN TERMS OF
DIVERSITY OF THE WORKFORCE I
WOULD LIKE TO SHARE MORE ABOUT
WHY WERE THE INTEGERS OR
DISADVANTAGES OF HAVING A
SEPARATE OFFICE FOR DIVERSITY
VERSUS EXPANDING IF IT'S
ALREADY WITHIN THE DTI
PURVIEW?
THIS IS SOMETHING I'M NOT
100 PERCENT CLEAR ABOUT.
>>I WOULD CERTAINLY SAY TO
STEP BACK AND LOOK CAREFULLY
AT HOW WE CAN REALLY MEET THE
SPIRIT VERSUS WHAT IS BEING
SUGGESTED AS A CHEESE OFFICER
OF WORKFORCE DIVERSITY THEY
POINTED OUT IN OUR STRATEGIC
PLAN AND I CERTAINLY INTEND TO
BE ATTENTIVE TO THAT BUT THERE
HAS NOT BEEN THE FOCUS
CONCERTED TO THOSE A
DISABILITIES TO BE DESIRABLE
AND THE CONCEPT OF HAVING AN
OFFICE THAT LOOKS AT THAT
SPECIFICALLY COULD BE
BENEFICIAL BUT WE HAVE THE
COCHAIRS HERE.
>>THANK YOU.
WE REALLY HAVE APPRECIATED
WORKING WITH YOU AND YOUR TEAM
BUT HAVING THE CENTER RAISES
THE ISSUES SO TO THE END OF
DTI THAT NEEDS TO BE ACTED
UPON SO WE FEEL VERY STRONGLY
TO HELP LOCATE THAT ACTION AND
ALSO WE WERE VERY MUCH ADVISED
TO PUT TOGETHER THESE
RECOMMENDATIONS.
SO WE BUILT UPON THE WAY THAT
OTHER SIMILAR OFFICES ARE
STRUCTURED.
SO I WILL LEAVE IT THERE.
THE ESTABLISHMENT OF THE
OFFICE IN MY VIEW IS OUR
RESPONSE TO A DEEPLY
UNDERAPPRECIATED NEED FOR THE
EXCLUSION OF PEOPLE WITH
DISABILITIES ALL ASPECTS OF
BIOMEDICAL WORK AND RESEARCH
AND THE RESEARCH THAT WE DO IN
THE DISABILITY COMMUNITY IS
QUITE DIVERSE.
ALL I SEE IS INTERACTING WITH
DISABLED PEOPLE THERE IS
HARMONY AND DISORGANIZATION
THAT NEEDS TO OCCUR ACROSS NIH
TO DO THIS RIGHT.
I WILL ALSO ADD WE'RE AT
GROUND ZERO.
THOSE OF US WHO HAVE BEEN
DOING THE WORK RECOGNIZE THERE
ARE STILL NEW CONCEPTS TO LOTS
OF FOLKS IN THE RESEARCH
ECOSYSTEM.
AND BECAUSE OF THOSE TWO
THINGS WE DO NEED TARGETED
FOCUSED EFFORT THAT WORKS
ACROSS THE SYSTEM TO ACTUALLY
HAVE A CHANGE.
AND WE NEED THAT WORK TO BE
DONE BY PEOPLE WITH EXPERTISE
AND EXPERIENCE WHICH LARGELY
IS MISSING AND A LOT OF SPOTS.
>>FIRST OF ALL THANK YOU ALL
THIS ISSUE IS IMPORTANT TO
ADDRESS FOR A MORE INCLUSIVE
ECOSYSTEM.
BUT I WOULD LOVE TO HEAR FROM
THE COCHAIRS ABOUT THE VISION
AND MISSION STATEMENT HOW
WOULD YOU RESHAPE THAT IN A
WAY THAT CAPTURES THE MISSION
WE ARE TRYING TO HAVE?
>>I CAN TAKE THAT.
THIS IS LISA.
THE LAST TWO WORDS ARE
REDUCING DISABILITY ALWAYS
SUGGEST TO ELIMINATE THE LAST
TWO WORDS.
BECAUSE FOR MANY OF US WITH
DISABILITIES WE DON'T WANT TO
BE REDUCED SO I THINK THAT IT
SIMPLY PERPETUATES THE ABLEST
ATTITUDES SO WE HAVE VERY
MODEST JUST CHANGE THE WORDS
IN THE MISSION STATEMENT
BONNIE OR STEVE?
>>WE HAVE LANGUAGE IN THE
REPORT AND THAT IS A GOOD
FIRST STEP WITH THE QUICK
ACTION ITEM BUT WE ENCOURAGE A
DEEPER RECONSIDERATION OF THE
MISSION STATEMENT WITH DIVERSE
PERSPECTIVES.
WE DID NOT WANT TO PRETEND WE
WERE EXAMINING THIS LANGUAGE
THROUGH FULLY INTERSECTIONAL
LENS AND THAT SPARKED AN IDEA
TO RE-EXAMINE THIS FROM
DIFFERENT DIMENSIONS AND
DIFFERENT PERSPECTIVES TO MAKE
SURE IT SHOULDN'T BE MORE THAN
JUST THE REMOVAL BUT
ADVOCATING RIGHT NOW FOR THE
REMOVAL OF THOSE TWO WORDS BUT
ALSO PUSHING FOR FURTHER
CONSIDERATION.
>>THANK YOU FOR SHARING THAT.
>>IT SEEMS TO ME THE IDEA OF
REMOVING THOSE WORDS FROM THE
NIH MISSION STATEMENT IS A
FANTASTIC AND IMPORTANT IDEA
AND SHOULD HAVE BEEN DONE
YEARS AGO.
BUT THE IDEA OF HAVING A
SEPARATE OFFICE FOR
DISABILITIES SEPARATES THE
EFFORT THAT I THINK OF AS ALL
INCLUSIVE MAYBE I'M BEING
INSENSITIVE BUT TO HAVE THAT
REMOVED BUT THAT DOES NOT
INCLUDE DISABILITY.
SO THAT DOESN'T RESONATE MAYBE
HAVING A SUB OFFICE WITHIN
WOULD MAKE MORE SENSE TO BUT
UNDER THAT UMBRELLA?
SO I APOLOGIZE IF I'M BEING
INSENSITIVE I DON'T MEAN TO BE
BUT I WOULD LIKE TO BE
ALL-INCLUSIVE AND I FEEL LIKE
THAT HAS BEEN THE SPIRIT OF
THAT INITIATIVE.
>>THERE IS AN OFFICE SO ONE
WOULD ARGUE IS NOT A SIMILAR
PARADIGM THERE THERE IS NOT
PARITY FOR WOMEN IN RESEARCHER
IN THE WORKFORCE SO IT IS A
SIMILAR DIMENSION AND TO BE
CLEAR THIS IS NOT JUST ABOUT
WORKFORCE IT'S ALSO ABOUT
RESEARCH AND MAKING SURE
DISABLED PEOPLE ARE INCLUDED
IN TRIALS.
I WAS LISTENING TO THE PRIOR
CONVERSATION THERE WAS NO
DISCUSSION ON THE
ACCESSIBILITY.
THAT IS PROBLEMATIC.
THAT IS NEEDED TO MAKE SURE
RESEARCH IS EQUITABLY
ACCESSIBLE SO THESE THINGS AND
THESE IDEAS STREAMING ACROSS
THE WHOLE ENTERPRISE FROM OUR
PERSPECTIVE AND YOU ARE RIGHT
IT IS UNDER OUR PURVIEW WITH
THOSE EFFORTS AND AS WE
OUTLINED IN THE REPORT WE ARE
VERY MUCH IN LOCKSTEP WITH
THESE OFFICES BUT THERE IS
RECOGNITION TO BE EFFECTIVE
THERE NEEDS TO BE A SEPARATE
FOCAL EFFORT OF FOLKS WITH
EXPERTISE AND STAFF WITH
EXPERTISE TO UNDERSTAND
ACCESSIBILITY AND ABLEST AM
AND RESEARCH DATA OF ALL
DIMENSIONS.
>>THE CONSULATE OFFICE FOR
THE OFFICE OF EQUITY DIVERSION
HERE AT AND IAH FOR ACCESS
ISSUES THAT BUT ALSO RESEARCH
LOOKS AT HOW THAT TRANSLATES
INTO FUNDED RESEARCH ECOSYSTEM
AND THEN THE ISSUE OF HEALTH
DISPARITIES THAT IS LED BY THE
NATIONAL MINORITY IN
COLLABORATIONS WITH ARC WE ARE
ALL BROUGHT TOGETHER WITH THIS
PLAN.
>>AGAIN A CLARIFICATION SO
ARE WE TALKING ABOUT LINE
OFFICE UNDER THE DIRECTOR OR
OFFICE AT EACH?
>>MAYBE WE'RE GETTING A
LITTLE AHEAD OF OURSELVES.
I THINK THE COCHAIRS HAVE
ARTICULATED VERY CLEARLY THE
RATIONALE OF WHY THEY FEEL A
FOCUSED APPROACH IS REQUIRED.
WHEN WE TALK ABOUT THE OFFICES
OF NIH THEIR OFFICES UPPERCASE
AND LOWERCASE O SOME ARE
APPROPRIATED SUCH AS THE
OFFICE OF RESEARCH FOR WOMEN'S
HEALTH AND OTHERS WHICH ARE
NOT WITH MORE ADMINISTRATIVE
DEVICES TO HELP US AS AN
ORGANIZATION KEEPING TABS ON
THINGS.
SO WHAT I WOULD HOPE THE
ADVISORY COUNCIL WOULD DO AND
WE ARE GETTING THAT SENSE AS
TO WHETHER OR NOT YOU ARE
SUPPORTIVE OF THIS AND THEN
THE ONUS COMES BACK TO THE
OFFICE OF THE DIRECTOR ALONG
WITH OTHER COLLEAGUES AND NIH
TO BEGIN TO FIGURE OUT THE
IMPLEMENTATION WHICH OF COURSE
WE WILL BRING BACK TO THIS
GROUP BECAUSE THAT IS RESEARCH
WHICH IS PART OF THE
FEEDBACK.
SO I DON'T THINK, I KNOW WE
CANNOT SOLVE THE NATURE OF THE
OFFICE SHOULD IT BE REMITTED
THIS AFTERNOON.
RATHER A MORE GLOBAL QUESTION
IS THE ACD SUPPORTIVE OF THIS
REPORT?
I HAVE NOT HEARD ANYTHING TO
THE CONTRARY.
>>I AM STRONGLY SUPPORT HE.
>>SO UNLESS THERE ARE
ADDITIONAL COMMENTS WHY MAYBE
IT'S NOT THE POINT TO CALL TO
QUESTION ARE THERE ANY
ADDITIONAL COMMENTS?
SO THE QUESTION IS CALLED IS
ANYBODY WANT TO MAKE A
MOTION?
>>IS THERE ADDITIONAL
DISCUSSION TO THIS REPORT FROM
THE ACD FROM A WORKING GROUP
WHO ACCEPTED THAT FROM THE
SUBCOMMITTEE?
I DON'T SEE ANY ADDITIONAL.
ALL THOSE IN FAVOR?
ALL THOSE OPPOSED?
ANYBODY ABSTAINING?
SO THE REPORT IS ACCEPTED AND
AGAIN AS I HAVE INDICATED WE
WILL TAKE US UNDER
CONSIDERATION AND WILL BE
REPORTING BACK THOSE TO THE
ACD AND THE WORKING GROUP SO I
WANT TO THINK FIRST OF ALL THE
SUBCOMMITTEE FOR EXCELLENT
WORK IN THE PERIOD GROUP FOR
THEIR INPUT AND NOW THANK YOU
TO THE ACD FOR THEIR
CONSIDERATION AS WELL.
>>SO NOW WE'LL JUST HAD TO
LUNCH BREAK WILL BE BACK AT
1:15 P.M. FOR AFTERNOON
CONVERSATION.
THANK YOU.
>>WE WILL GO AHEAD AND GET
STARTED.
I EVERYONE ENJOYED THEIR LUNCH
BREAK.
WE WILL MOVE ON TO THE FINAL
PRESENTATION OF THE DAY.
LAST BUT DEFINITELY ABSOLUTELY
NOT LEAST WITH AN IMPORTANT LOTT
TWO YEARS?
FEBRUARY 2021.
THE LAST TWO YEARS.
SO DOCTOR JOHNSON DIRECTOR FOR
MANAGEMENT COCHAIR AND OUR NEW
COCHAIR THAT YOU HEARD FROM
YESTERDAY AND MYSELF AND WE
WILL BE GOING OVER MOST OF THE
PRESENTATION OF THE DEPUTY WHO
WILL BE PROVIDING A PORTION OF
THE PRESENTATION.
I WILL TURN IT OVER TO YOU.
>>THANK YOU.
GOOD AFTERNOON AND I AM
DELIGHTED TO LEADERS
PRESENTATION ON BEHALF OF THE
COCHAIRS, UNITED COMMITTEE
, AND ALL THE MEMBERS OF UNITE
WHO HAS PUT A AMAZING AMOUNT
OF WORK AND WE WILL PROVIDE AN
UPDATE TO THE ACD.
AND MONICA WILL JUMP IN FOR A
PIECE AS WELL.
SO AS WE THINK ABOUT UNITE, IT
IS A THINK TANK FROM THE
STEERING COMMITTEE ON BEHALF
OF THE COMMUNITY TO GENERATE
BOLD IDEAS TO MOVE US FORWARD
IN THIS REALM OF DIVERSITY
EQUITY INCLUSION
ACCESSIBILITY.
AND THE MAIN FOCUS IS TO
ADDRESS STRUCTURAL RACISM AND
IN THE BIOMEDICAL AND
BEHAVIORAL RESEARCH ENTERPRISE
SO WE HAVE FINALIZED AND MADE
A PROGRESS REPORT AVAILABLE
FROM WHAT WE CONSIDER FY 21 /
22 OR THE ACTIONS WE HAVE
TAKEN WITH THE DISPARITIES OF
MINORITY HEALTH RESEARCH AND
WITH THE INTERNAL WORKFORCE
AND ON TOPICS THAT INTERSECT
WITH GREATER TRANSPARENCY AND
ACCOUNTABILITY ACROSS THE NIH
WITH BEHAVIORAL COMMUNITY.
AGAIN THIS IS A GREAT REPORT
I'M SURE IT'S BEEN A FATE MADE
AVAILABLE TO YOU.
AND THEN REPORTING OUT IN
TERMS OF THE FIVE COMMITTEES
AND AS WE HAVE COME TOGETHER
WITH THE LEADERSHIP, WE HAVE
DEVELOPED CHALLENGE STATEMENTS
AND GOALS SO WITH THE FOUR
FOCUS AREAS SHOWN HERE
ELEVATING HEALTH DISPARITIES
AND RESEARCH ACROSS THE
INSTITUTES AND CENTERS
PROMOTING THE BIOMEDICAL
RESEARCH ECOSYSTEM AND WITH
THAT WORKFORCE AND THEN
IMPROVEMENT ACCURACY AND
TRANSPARENCY OF RACIAL AND
ETHNIC EQUITY DATA.
BUT TO STEP BACK LOOKING AT
EVERY 26, 21 —- 2021, WITH
COMMITMENT FROM NH DIRECTOR
CALL AS WE WOULD IDENTIFY AND
ADDRESS STRUCTURAL RACISM WITH
BIOMEDICAL BEHAVIORAL
SCIENCES.
IF WE THINK ABOUT THE GENESIS
OF UNITE, THERE WAS A SERIES
OF INTERNAL MEETINGS AND AS I
THOUGHT ABOUT THOSE MEETINGS
, WHAT CAME TO ME IS WE TOOK A
STEP BACK AWAY FROM THE MIRROR.
WE HAD GOTTEN TOO CLOSE TO
REALLY UNDERSTAND EXACTLY THE
DEPTH OF THE PROBLEM WE HAD
WAS STRUCTURAL RACISM IN
BIOMEDICAL RESEARCH
ENTERPRISE.
THOSE CONVERSATIONS ARE A STEP
BACK FROM THE MIRROR TO HAVE A
BROADER VIEW ON WHAT THE
ISSUES WERE.
AS WELL AS ENGAGING
INDIVIDUALS FROM NIH AND ALL
DISCIPLINES SO THROUGH THIS
PROCESS WE HAVE BEEN ABLE TO
SHOW QUITE A BIT OF PROGRESS
THE MILESTONES WE HAVE
ACCOMPLISHED STARTING THE
SUMMER OF 2020 WITH THOSE
CONVERSATIONS ALL THE WAY UP
TO WHERE WE ARE NOW WITH THAT
INSTITUTIONAL PRIZE
COMPETITION TO BE LAUNCHED
THERE ARE A LOT OF EFFORTS
WITH EQUITY PLANS AND A LOT OF
WORK WE HAVE DONE INTERNALLY
RELATIVE TO THE WORKFORCE JUST
THINKING BACK OVER MY CAREER
HERE I HAVE BEEN AMAZED AT
WHAT WE HAVE ACCOMPLISHED IN
THE TIME WE HAVE SPENT WITH
UNITE.
AGAIN, THE FIVE COMMITTEES OR
THE FIVE WORK STREAMS AND YOUR
COMMITTEE IS UNDERSTANDING
STAKEHOLDER EXPERIENCES
COACHES LOOKING AT NEW
RESEARCH AND THEN IMPROVING
THE STRUCTURE INTERNALLY AND
THE TRANSPARENCY WHICH FOCUSED
ON COMMUNICATION AND
ACCOUNTABILITY WITH INTERNAL
AND EXTERNAL STAKEHOLDERS AND
THE COMMITTEE WHICH LOOKS AT
EXTRA RESEARCH IN THE GARDEN
POLICY STRUCTURES AND WHAT WE
NEED TO DO THERE AS WELL AND
THOSE WORK STREAMS HAVE COME
TOGETHER WITH THESE CHALLENGE
STATEMENTS THAT WE'RE MOVING
FORWARD WITH WITH THE FOCUS
AREAS AND THIS HAS HELPED US
TO HELP US OUT QUITE A BIT.
LOOKING AT THE CHALLENGE
STATEMENTS THIS HELPS US AND
WILL TAKE US TO A HIGHER LEVEL
GOING FORWARD AND WE CERTAINLY
RECOGNIZE WE HAVE CHALLENGES
AND ADDRESSING THOSE IT WILL
NOT BE AS EASY WHEN WE FIRST
STARTED OUT.
IT IS A MARATHON AND WE WILL
BE RUNNING THIS RACE AS LONG
AS WE CAN.
SO LOOK AT THESE CHALLENGE
STATEMENTS WITH THE ELEVATED
HEALTH DISPARITIES AND
RESEARCH THE MINORITY RESEARCH
IS PRIORITIZED RIGHT NOW AND
IS NOT ENOUGH FUNDING TO
ADDRESS THE GAPS THAT EXIST SO
WE WANT TO HELP FOCUS ON
PRIORITIZING WITH THE EFFORT
ACROSS NIH TO MAKE A
SIGNIFICANT CHANGE OVER THE
NEXT FIVE YEARS.
IN TERMS OF PROMOTING EQUITY
WITH BIOMEDICAL RESEARCH AGAIN
WE CAN SEE THE COMMUNITY WORK
THAT GRANT APPLICANTS SO AGAIN
WE WENT TO HELPING FOR IDEAS
OF THE DISPARITY OF YOU ARE
REPRESENTING A GROUP YOUR
SUCCESS RATE IS ON PAR WITH
OTHERS.
LOOKING AT THAT THIRD
CHALLENGE THE EQUITY AND THE
INTERNAL WORKFORCE, AGAIN NIH
INTERNALLY ANYWHERE ELSE YOU
MAY CONSIDER BE HAVE OUR
ISSUES THAT HAVE BEEN
IDENTIFIED AND WORKING TO
ACCOMPLISH SO HERE WE TRY WHEN
IT COMES TO HIRING AND
PROMOTIONS THERE IS EQUITY
DOESN'T GIVE YOU A GOOD IDEA
WHAT YOUR BACKGROUND MAY BE
WHICH COULD BE THE CASE RIGHT
NOW SO THERE IS A LOT OF
EFFORT WE ARE COMING UP WITH
NEW WAYS TO SUSTAIN WORKER
EQUITABLE TO MAKE SURE WE ARE
ON —- ARE VERY INCLUSIVE AS WE
DO HIRING AND WITH PROMOTIONS
AND WITH THE FOCUSED AREAS
IMPROVING THE TRANSPARENCY AND
THAT EQUITY DATA AGAIN, IT IS
A BIG DEAL IF YOU HEARD THE
CONVERSATION EARLIER NOT JUST
IN THE SCIENTIFIC REALM BUT IT
IS IMPORTANT IN TERMS OF WHAT
WE DO AND HOW WE STAFF.
WE WILL ADDRESS ISSUES OF
STRUCTURAL RACISM TO
UNDERSTAND WHERE THE PROBLEMS
ARE AND DATA IS ONE WAY THAT
WILL GET US THERE.
SO TO BE MORE TRANSPARENT
ABOUT THAT AS WE MOVE FORWARD.
BUT UNITE, WE COME HERE AND
TALK ABOUT UNITE BUT AS YOU
CAN IMAGINE IT'S NOT AN
OPERATION BY ITSELF WE ARE IN
THE WHOLE NIH ECOSYSTEM AND
THERE'S A LOT OF OTHER EFFORTS
GOING ON.
NOT OPERATING IN A VACUUM.
WE WORK WITH GROUPS ACROSS THE
NIH BUT THERE ARE OTHER
INITIATIVES WE ARE ENGAGED IN
TERMS OF THE STRATEGIC PLAN
AND ALL OF THESE EFFORTS
ADDRESS A NUMBER OF DIFFERENT
ACTIVITIES WITH OBJECTIVES AND
RESEARCH CAPACITY AND RESEARCH
CONDUCT COST-CUTTING THINGS
PUBLIC HEALTH CHALLENGES
COLLABORATIVE SCIENCE AND DATA
SCIENCE WITH THE RACIAL EQUITY
THAT WE OFTEN USE TO MAKE SURE
THAT WE ARE NOT LEAVING
SOMEONE OUT BEHIND.
THEY HAVE A GREAT UMBRELLA
HERE AT NIH AND TALKING TO
OTHER ORGANIZATIONS THEY ARE
PRETTY MUCH AMAZED AND WONDER
HOW WE KEEP IT ALL TOGETHER
AND WE DO A PRETTY GOOD JOB OF
THAT.
SO IN TERMS OF FOCUS AREAS AND
ONE ELEVATING HEALTH
DISPARITIES ACROSS THE SEAS WE
WANT TO LOOK AT SOME EXAMPLES
THE FIRST WHEN I WILL NOT GO
TO BECAUSE MONICA WILL TALK
ABOUT THAT BUT THAT IS THE
INITIATIVE.
BUT THIS IS SOMETHING THIS IS
SOMEWHAT OF A GAME CHANGER AND
MONICA WILL ADDRESS THAT LATER
INCLUDING THE STRUCTURE OF
WHICH THE IT IS BASED UPON.
SO LOOKING AT INEFFICIENT DATA
AND TRANSPARENCY WE ARE
LOOKING TO ENHANCE THE NIH
MISSION.
BUT THAT SHOULD NOT BE SO ONE
THING I'M ASKING THE IC TO DO
IS PRIORITIZE ACROSS THE
TRIALS RESEARCH AND WE LOOK
FORWARD TO THE ADDITION OF
RESEARCH ACTIVITIES IN THIS
AREA AND IN THE FOCUS AREA
NUMBER TWO PROMOTING EQUITY
WITH THE BIOMEDICAL RESEARCH
SYSTEM THERE IS A LOT OF
ACTIVITY GOING ON TO PROMOTE
DIVERSITY AND INCLUSION THIS
WEEKEND - - AND WITH THE
COMMITTEE HAS DEVELOPED HAS
DEVELOPED THE PARADIGM AND
WITH THE STAKEHOLDER
ENGAGEMENT SO PROMOTING EQUITY
AT OTHER INSTITUTIONS AT NIH
WITH POLICIES AND
PROCEDURES, CAREER PATHWAY AND
RESORTS ON THIS RESEARCH AND
RESOURCE CAPACITY AND MINORITY
SERVING INSTITUTIONS.
THERE IS A LOT OF WORK THEY
HAVE GOING ON IN THOSE AND THE
NEED TO THAT SCIENTIFIC TALENT
IS NURTURED AND ABLE TO BE
PROMOTED.
SO THAT PERSON IS MAKING TO
YOU MORE ABOUT AND I CAN IT
TALKS ABOUT INFORMATION AND TO
ADDRESS THIS BUT ALSO IN TERMS
OF EXPANDING PARTNERSHIPS K-12
INITIATIVE AND HOW WE CAN EVEN
REWARD INSTITUTIONS THAT DO A
GREAT JOB SO A LOT OF EFFORTS
TO MAKE CHANGES AND ADDRESS
THE CHALLENGES WE HAVE HERE.
AND WITH THE INTERNAL
WORKFORCE.
I'VE BEEN WITH NIH QUITE A BIT
OF TIME AND I AM IMPRESSED
WITH THIS NEW FOCUSED AND
CONCENTRATING WITH THE NIH
INTERNAL WORKFORCE WITH THE
INITIATIVES OF WITH THOSE
STAFF VOLUNTEERS SEPARATED
INTO DIFFERENT COMMUNITIES
ADDRESSING SPECIFIC ISSUES.
AND WE MAY NOT EVEN AND BE
AWARE OF.
BEEN LOOKING TO HAVE THE
PITCHER THAT YOU SEE DOWN ON
THE RIGHT IS ABOUT POWER OF
INCLUSIVE RECOGNITION THAT IS
NOW SPREAD THROUGHOUT THE
CAMPUS.
BUT NOW THIS BUILDING DOWN THE
HALL WITH THE AGENCIES COME
HERE AND SEE THAT AND SAY WE
NEED TO DO THAT YOU NEED TO
MAKE SURE WE ARE REPRESENTING
EVERYONE SO THAT HAS BEEN A
GREAT INITIATIVE.
SO IN THIS AREA A LOT OF
ACTIVITY IS GOING ON BECAUSE
THEY ARE RIGHT AT THE STAGE
AND THAT WILL HAPPEN THE NEXT
COUPLE OF MONTHS BUT WE HAVE A
LOT OF INITIATIVES ALONG THE
WAY AND WITH THOSE EQUITY
PLANS ALL ICS HAVE DEVELOPED
THEM.
THEY ARE LOOKING TO REVISE
THEM FOR WHAT IS HAPPENING AND
THEN LOOKING AT THE NIH
DIRECTOR'S AWARD AND TO BRING
FORWARD TO THE STEERING
COMMITTEE THE RECOMMENDATIONS
WITH THE NEW CAREER
DEVELOPMENT OPPORTUNITY AND
WITH LEADERSHIP DEVELOPMENT
BUT IT MAINLY FOCUSES AT THE
HIGHER LEVELS OF THE WORKFORCE
SO WE ARE DEVELOPING A CAREER
DEVELOPMENT PROGRAM SO THAT WE
CAN FILL A GAP LOOKING AT THE
DATA SO IT IS LAUNCHED AND HAS
BEEN APPROVED HUMAN RESOURCES
IS WORKING TO IMPLEMENT THAT
ACTIVITY SO IN TERMS OF FOCUS
AREA FOR SO WITH THE RACIAL
ETHNIC DATA.
AND THAT EQUALS SCIENCE IT'S
NOT JUST SCIENCE OF RESEARCH
ARENA BUT CERTAINLY IN THE
WORK OF THE COMMITTEE AND THE
WORKGROUPS ARE LOOKING UP AS
WELL SO WE ARE JUST SO
APPRECIATIVE THAT WE WILL TALK
MORE ABOUT THE LISTENING
SESSIONS AND THE OUTCOME FROM
THAT LATER ON IN THE
PRESENTATION SO WE WILL HEAR
MORE ABOUT THE DATA WE HAVE
COLLECTED AGAIN, A LOT OF
ACTIVITIES AND YOU KNOW THIS
QUITE WELL THAT IT'S EASY TO
GENERATE DATA.
TO PUT INTO A FORM THAT ALMOST
ANYONE CAN LOOK AT IT AND SAY
I SEE SOMETHING WE CAN WORK
ON.
AND WITH THE FOCUS AREA
LOOKING AT THE DATA TO MAKE
SURE WE ARE COMMUNICATING THE
DASHBOARDS AND THE COCHAIR
CORNER TO MAKE SURE WE ARE
SHARING OUR DATA SO EVERYONE
WILL KNOW WHAT WE ARE DOING
WITH THE INITIATIVE.
AND TO EXPAND EFFORTS TO
CONTINUE THE MARATHON.
KEEP EVALUATING THE
SHORT, MEDIUM, LONG-TERM
OBJECTIVES AS WE SELL INTO THE
FOCUS AREAS TO MAKE SURE THEY
ARE REPRESENTING THE ISSUES
THEY NEED TO DEAL WITH.
SO ALL THE WORK THAT'S GOING
ON THE INSTITUTES AND CENTERS
COME TOGETHER QUITE WELL TO
SHOW THAT YOU CAN REALLY MAKE
A DIFFERENCE TO MAKE THINGS
MORE INCLUSIVE AND EQUITABLE
AND TAKE THE TIME TO FOCUS.
SO NOW WE WILL TALK ABOUT THE
FOCUS AREA NUMBER ONE TO MEET
THAT PART OF THE
PRESENTATION.
>>THANK YOU DOCTOR JOHNSON I
AM DELIGHTED TO COVER THE AREA
THE FOCUS AREA WITH MINORITY
HEALTH RESEARCH.
SO AMONG THE GOALS IS TO
AUGMENT ONGOING FUTURE WORK IN
THIS SPACE TO FACILITATE AND
TO COMMUNICATE AND AMPLIFY AND
WITH THAT STRATEGIC PLAN IS
UNDER WAY AND AS PRESENTED IT
CONTINUES TO WORK DILIGENTLY
TO ANALYZE MINORITY HEALTH
DISPARITIES IN THE RESEARCH
PORTFOLIO WITH THE GOAL OF
INCREASING ACCURACY AND
EFFICIENCY WITH NIH FUNDING IN
THIS AREA.
AND WITH THE FUNDING
OPPORTUNITY ANNOUNCEMENTS THAT
INCLUDE A FOCUS ON MINORITY
HEALTH AND HEALTH DISPARITIES
RESEARCH AS JUST ONE IMPORTANT
METRIC ACQUIRED FRUSTRATION IN
THE PROCESS BUT ALSO LIKE TO
AMPLIFY THE INITIATIVES ACROSS
NIH.
SHOWS DATA THERE HAS BEEN A
CHANGE IN THE NUMBER OF
ANNOUNCEMENTS ANNOUNCED
EXPLICITLY INTERESTED IN
HEALTH DISPARITY RESEARCH
LOOKING AT NEW WAYS PUBLISHED
BETWEEN 2018 AND 2022.
COMPARED TO 2018 AND 2019
THINKING OF IS A PRE- PANDEMIC
THERE ARE OPPORTUNITIES
INDICATING A SPECIFIC INTEREST
IN WITH 2019 THROUGH 2020 OH
195 PERCENT INCREASE 43
PERCENTAGE POINTS AND CHANGING
FROM 2019 THROUGH
221250 PERCENT.
THE DATA IS THE DISTRIBUTION
OF FUNDING OPPORTUNITY
INTEREST ACROSS INSTITUTES AND
CENTERS AND OFFICES THAT IS
PRE- PANDEMIC AND THE GREEN
AND YELLOW AND DARK BLUE BARS
ARE 2020 THROUGH 2022
RESPECTIVELY.
OVERTIME YOU SEE A TREND WHERE
MORE FUNDING OPPORTUNITIES
WITH SOME DEGREE OF INTEREST
EXPRESSED IN THIS SPACE FOR
THOSE REPRESENTED IN THIS
FIGURE I WILL NOTE FOR THE
HEALTH DISPARITIES TO FOCUS DO
NOT REFLECT IC PRODUCTIVITY OR
THE THIS ON THESE TOPICS
RELATIVE TO THE OVERALL NUMBER
OF FUNDING OPPORTUNITY
ANNOUNCEMENTS AND THEN
RELATIVE TO THE IMMEDIATE PRE-
PANDEMIC YEARS THERE IS AN
INCREASED FOCUS ON THESE
TOPICS IN THE FUNDING
OPPORTUNITY OF MANY ICS WHICH
IS GREAT TO SEE.
AND THE MECHANISMS FOR THE
FUNDING OPPORTUNITIES
31 PERCENT ARE THE EQUIVALENT
FUNDING MECHANISMS ALSO THE
FOA IS JUST ONE MEASURE OF THE
IC INTEREST OR INVESTMENT IN
THIS AREA AND TO INCREASE AND
EXPRESS INTEREST.
THE IMPORTANT NEXT STEP WOULD
BE A DEEPER DIVE TO EXAMINE
THE NUMBER OF APPLICATIONS IN
RESPONSE TO THESE
OPPORTUNITIES AS WELL AS THE
ACTUAL AWARD MADE FOR THE
HEALTH DISPARITIES PROJECTS.
WE'VE DONE THAT JUST THROUGH
ONE EXAMPLE HERE A 2021 NIH
LED FUNDING OPPORTUNITY TO
UNDERSTAND AND ADDRESS THE
IMPACT OF STRUCTURAL
DISCRIMINATION ON MINORITY
HEALTH AND HEALTH DISPARITIES
THROUGH OBSERVATIONAL
RESEARCH.
WE WERE DELIGHTED 25 OFFICES
PARTICIPATED IN THIS
INITIATIVE THERE WAS A ROBUST
RESPONSE 23 PERCENT WERE
AWARDED INCLUDING 15 THROUGH
EARLY STAGE INVESTIGATORS
FUNDED PROJECTS THAT WERE
MOSTLY OBSERVATIONAL STUDIES
FOCUSED ON MULTIPLE POPULATION
GROUPS AND COVERING A RANGE OF
DISEASES OF CONDITIONS THAT
WERE CONSISTENT WITH THE
MISSION OF THE ORGANIZATION
SUPPORTING THE PROJECTS.
HERE IS A SUMMARY OF A CONTENT
ANALYSIS WITH NEW FUNDING
PUBLISHED SPECIFICALLY 2022 TO
INDICATE INTEREST OF THE
HEALTH DISPARITIES RESEARCH TO
UNDERSTAND THE AREAS OF
SPECIFIC EMPHASIS SO THERE ARE
SEVERAL COST-CUTTING THEMES
INCLUDING SOLICITING RESEARCH
TO UNDERSTAND ACROSS THE
LIFESPAN AMONG CHILDREN OLDER
ADULTS AND RESEARCH TO
INTEGRATE TO UNDERSTAND THE
RULES OF THE SOCIAL
DETERMINANTS OF HEALTH AS
DRIVERS OF HEALTH AND HEALTH
DISPARITIES.
OTHER THINGS INTERESTED IN
COMMUNITY RESEARCH MULTILEVEL
INTERVENTIONS.
IT ALSO HIGHLIGHTED THE
IMPORTANCE OF INCLUSIVE
PARTICIPATION IN RESEARCH AND
JUST ONE FEW EXAMPLES OF THE
DISEASE OF THE 2022 PUBLISHED
FUNDING OPPORTUNITIES.
>>THESE ARE SIX EXEMPLARS
JUST SELECTED TO EMPHASIZE THE
COST-CUTTING THEMES I WAS
IMPRESSED BY THE SUITE OF
FUNDING OPPORTUNITIES WITH
RACIAL EQUITY INITIATIVE WHICH
SEEKS TO IDENTIFY BOLD NEW
DIRECTIONS FOR OPERATIONS TO
HAVE A MANDATE RACIAL AND
ETHNIC WITH ADDICTION
OUTCOMES.
THIS IS MY LAST SLIDE IT'S A
LITTLE MORE ON CAMPUS WHICH
STANDS DIRECTLY FROM UNITE AND
SEEKS TO IMPLEMENT AND
EVALUATE HEALTH EQUITY FOCUS
STRUCTURAL INTERVENTIONS THAT
ARE COMMUNITY LED.
THIS IS IN CONTRAST TO THE
USUAL MODEL OF ACADEMIC ENDS
DECISIONS ARE BRINGING ONBOARD
COMMUNITY PARTNERS WHICH IS A
REAL INNOVATION SO WE LOOK
FORWARD TO WHAT COMES FROM THE
FUNDING OPPORTUNITIES OF ALL
THE EFFORTS TO INCREASE THE
IMPORTANT AREAS TO ADDRESS
HEALTH DISPARITY.
SO NOW I WILL TURN IT BACK
OVER TO DOCTOR JOHNSON.
>>NOW AS WE LOOK TO A LOT OF
WORK GOING ON IN THAT AREA
SOMETHING A BIT DIFFERENT JUST
TO START OFF WITH WHAT IS
HAPPENING IN THE EXTRA NO
SPACE CAN HAVE GREAT FUNDING
ANNOUNCEMENTS GREAT RESEARCH
GOING ON BUT WE HAVE TO THINK
ABOUT THE ENVIRONMENT THAT
WORK IS HAPPENING IN THE
REALLY LOOK AT DIVERSITY
EQUITY INCLUSION.
SO IN THE AREAS WE HAVE A
BEHAVIORAL CODE FOR THOSE FOR
THE FUNDED GRANTS AND ALSO
RESEARCH WORKING OFFICE OF
GENERAL COUNSEL MERELY WORKING
IN A JACOBS TO PULL THIS
TOGETHER THAT ACTUALLY THERE
IS SOMETHING THAT COULD BE
DONE.
BUT IN ADDITION TO THE GRANTS
POLICY STATEMENT THIS MONTH OR
IN JANUARY TALKING ABOUT THOSE
INTERNAL CONTROLS AND AS THE
SERVICES HERE AT THE NIH
WANTING WERE ALWAYS THINKING
ABOUT DEALING WITH OUR
FINANCES.
BUT WE LOOKED AND SAID THAT
CODE OF FEDERAL REGULATIONS IS
SITS ON IS MUCH BROADER.
SO THE CFR WORD SAY WE COULD
TELL RECIPIENT ORGANIZATIONS
TO BE IN COMPLIANCE FOR THOSE
STANDARDS FOR CONTROL OF THE
FEDERAL GOVERNMENT THESE
RECIPIENT ORGANIZATIONS HAVE
TO HAVE CODES OF CONDUCT AND
THAT EXPECTATION OF THE
PERSONNEL SUPPORTED BY NIH
GRANTS.
SO NOW THESE CODES OF CONDUCT
HAVE TO BE ARTICULATED WITH
THE CONDITIONS OF AWARDS SO
THESE INCLUDE BUT NOT LIMITED
TO WORKPLACE FREE OF
DISCRIMINATORY HARASSMENT AND
A NOT HOSTILE ENVIRONMENT SO
THIS IS A GREAT MOVE FORWARD
AND AS I MENTIONED EARLIER AND
THAT WE CAN ARTICULATE MORE
ABOUT THAT, THIS WILL HELP US
TO MAKE SURE THE ENVIRONMENT
THAT IT IS CONDUCTED IS IN
ALIGNMENT WITH THE NIGHT
PRINCIPLES THAT WE HAVE.
IN TERMS OF FOCUS AREA NUMBER
FOUR NOT MENTIONING NUMBER
THREE THERE IS A LOT GOING ON
AND WE TOLD YOU EARLIER ABOUT
WHAT WE ARE PLANNING TO DO
THAT HERE WE WILL FOCUS ON THE
INFORMATION THAT WE HAVE SO
THIS RFI WAS RELEASED SPRING
OF 2021.
AND HOW TO ADVANCE RACIAL
EQUITY AND WITH THE HEALTH
DISPARITIES AND EQUITIES.
AND THEN THE MAJORITY ARE FROM
ACADEMIC INSTITUTIONS.
AND WITH GENERAL MEMBERS OF
THE PUBLIC AND FROM HER OWN
NIH STAFF.
AND SO AS WE LOOKED AT THIS
AND GET THE APPROACH WE HAVE
HERE.
AND THEN TO ORGANIZE THE
INFORMATION AND THEN TO
PRESENT THAT TO LOOK AT THE
RECOMMENDATIONS THEY ARE
REPRESENTATIVE AND NOT TO HAVE
THOSE INTERPRETATIONS BUT THAT
KEY AREA COMES INTO FIVE
GENERAL CATEGORIES STUDENT TO
THE BIOMEDICAL WORKFORCE AND
EQUITY RESEARCH AND COMMUNITY
PARTNERSHIPS AND OUTREACH AND
THE SUGGESTIONS FROM THE
RESPONDENTS AND SOME OF THESE
WE HAVE ALREADY PROPOSED AND
HAVE WORK ON THE WAY TO
IMPLEMENT IT.
AND WITH THAT INFORMATION THAT
IS QUITE HELPFUL BECAUSE ON
THIS CAME A NUMBER OF
CROSSCUTTING THEMES AND WITH
THOSE COST-CUTTING THEMES ARE
SHOWN HERE TO INCLUDE THE
EXPANSION AND WITH THE DIA
INITIATIVES AND EXPANDING THE
TRAINING AND CAN IMPROVING
MEDICATION AND OUTREACH AND
ACKNOWLEDGING STRUCTURAL
RACISM SO THERE IS A LOT MORE
DETAIL IN THE RFI REPORT.
SO NOW WITH THE EXECUTIVE
SUMMARY AND RODE OUT ACROSS
MULTIPLE CHANNELS.
AND THEN WITH THE RESPONDENTS.
AND THEN COMMITTED TO THIRD
AND HAS THE WORK WE ARE DOING
AS PART OF UNITE AND THE NIH.
AND IT IS A GREAT EFFORT AND
IT TAKES A LOT OF EFFORT AND
THEN HAVE SOME CHANGES FROM
TIME TO TIME SO WE ARE
EXPANDING THE NIH LEADERSHIP
FOR UNITE.
AND AS THE COCHAIR.
AND THEN WE HAVE SHELLEY WHO
WILL BE JOINING THE NEW
COMMITTEE MONICA WHO HAS BEEN
A COCHAIR OF THE NEW COMMITTEE
WITH THE NEW RESEARCH OF
MINORITY HEALTH AND HEALTH
DISPARITIES RESEARCH.
AND THEN WITH THE COCHAIRS AND
THEY ARE ALL EXCITED TO TALK
ABOUT THAT EFFORT.
IN ADDITION WITH THE WITH THE
OFFICE OF EQUITY AND
INCLUSION.
WITH THAT INITIATIVE WE ARE
LEAVING THE OVERALL INITIATIVE
AND CO- LEADING THE COMMITTEE
AS WELL.
AND JOINING THE COMMITTEE AND
ANOTHER GREAT ADDITION TO THE
KEY COMMITTEE THERE ARE THOSE
WHO ARE ROTATING OFF AS
CERTAIN TO HELP US TO BE
SUCCESSFUL.
AND ALL THE MEMBERS OF THE
NIGHT COMMITTEE AND THE WORK
THAT'S GOING ON.
AS HE GO FORWARD TO FOCUS THE
AREAS SITTING ON THOSE AS
NEEDED AND I THINK IN TERMS OF
OUR REPORTING WE WILL SHIFT
THAT TO AN ANNUAL UPDATE.
AND THEN THE BIOMEDICAL
RESEARCH INSTITUTE AND THE
PRICE THAT YOU WANT TO BE AND
THEN YOU ARE CERTAIN YOU CAN
SUCCEED AND THRIVE.
SO WITH THAT WE WILL TURN IT
OVER TO QUESTION AND COMMENTS
RELATED TO THE NIGHT UPDATE.
>>THERE'S A GROUP OF PEOPLE
THAT VOLUNTEER THEIR TIME
SERVING AS MEMBERS OF THE FIVE
COMMITTEES THIS IS A MORE
RECENT SUCCESS WE HAVE HAD AS
PART OF THE INITIATIVE IS
TRULY TRANSFORMATIVE I CANNOT
SAY ENOUGH POSITIVE ATTRIBUTES
FOR THIS TEAM AND THE
SCIENTIFIC APPROACH AS WELL AS
A COLLEGIAL APPROACH.
AND THE STRUCTURES OF RACISM
SO THAT IS A BROADER
CHALLENGE.
WANT TO EXPRESS MY ADMIRATION
WITH DOCTOR BARNES AND JOHNSON
FOR ALL OF THEIR WORK IN THIS
REGARD.
AS I HAVE SAID ON MULTIPLE
OCCASIONS I THINK THE UNITE
APPROACH THEY HAVE EXECUTED IN
THE UNITED INITIATIVE IS A
BLUEPRINT FOR STRUCTURAL AND
ORGANIZATIONAL INFORMATION.
I HAVE NEVER SEEN ANYONE
INVOLVED IN THESE KINDS OF
ISSUES BEFORE IT HAS NEVER
BEEN WELL CONCEIVED OR
EXECUTED EXECUTED SCIENCE
-BASED APPROACH AND I HAVE
TOLD MARIE I HAVE TO SEEING
THE PRAISES SO ONE THING I
WOULD ASK IS AROUND THE DATA
COLLECTION COMPONENT OBVIOUSLY
THOSE METRICS THAT MONICA HAS
DESCRIBED, IT IS IMPORTANT FOR
THOSE ORGANIZATIONS TO LEARN.
UNIVERSITIES AND BUSINESSES TO
TALK ABOUT RUSSIA DATA
COLLECTION.
WITH THE ULTIMATE CORRECTION
WITHOUT WE WOULD GO DOWN THIS
ROAD BUT WHAT IS THE
COLLECTIVE MEASURE?
SO IN THAT REGARD OVER THE
PAST TWO YEARS WHAT ARE THE
LESSONS LEARNED THAT GOES TO
DOCTOR JOHNSON AND DOCTOR
BERNARD?
>>THERE IS A LOT OF US.
AS THOSE UNITE MEMBERS HAVE
JOINED IN.
MONICA DO YOU WANT TO TALK
ABOUT DATA COLLECTION?
>>I CAN SPEAK FROM THE
PERSPECTIVE OF A COMMITTEE
COCHAIR THAT REALLY FOCUSES ON
PERSPECTIVE DATA COLLECTION IN
LISTENING SESSIONS IN THE
EXTRAMURAL COMMUNITY AND THAT
WAS A SIGNIFICANT EFFORT TO
REQUIRE A LOT OF PARTNERSHIPS
TO CONVENE GROUPS TO MAKE THEM
AWARE OF THE OPPORTUNITY TO
SHARE THEIR VOICE AND THEIR
PERSPECTIVE.
IT'S IMPORTANT WE CREATED
OPPORTUNITIES THAT WERE SAFE
WE ALSO DEVELOPED A PLAN TO
ANALYZE AND TO MAKE SURE THEY
ARE SO WHAT WE HEARD IT WAS
NOT SURPRISING THAT WE SHARED
SOME VULNERABLE EXPERIENCES
DIRECTLY OR VICARIOUSLY.
AND THEN IT IS IMPORTANT TO
RETURN THOSE RESULTS TO OUR
COMMUNITY PARTNERS IN TERMS OF
THE EXTERNAL LISTENING
SESSIONS HOSTING SUMMARIES AND
THINK OUR PARTICIPANTS FOR
LENDING THEIR VOICE AND TIME
TO CONTRIBUTE IN THE WAY THEY
COULD TO UNITE AND TO DEVELOP
A SERIES OF POTENTIALLY
ACTIONABLE RECOMMENDATIONS
THAT HAS BEEN PRESENTED IN THE
RFI AND THE EXTERNAL LISTENING
SESSIONS BEING CONSIDERED AND
MANY ARE UNDERWAY TO 1 DEGREE
OR ANOTHER.
>>AND HAVING IT TO BE A
COCHAIR OF A COMMITTEE WITH
DOCTOR ARCHER FOR A WHILE WE
FOUND IN REGARDS TO INTERNAL
DATA THE WAY WE DESCRIBE
POSITIONS VARIES FROM PLACE TO
PAY ITS AND IT MAKES IT
DIFFICULT TO DO THOSE DIRECT
COMPARISONS SO IF YOU LOOK AT
THE PROGRESS REPORT THERE'S A
LOT THAT HAS BEEN DONE
INTERNALLY BUT THOSE THAT ARE
STILL UNDER DEVELOPMENT AND
NOT READY FOR PRESENTATION
WITH THIS PARTICULAR ACD
MEETING.
LOOK AT RACE OR ETHNICITY OR
GRADE LEVEL.
SO THERE ARE SOME APPARENT
INEQUITIES THAT LED TO THE
DEVELOPMENT OF THE LOWER
TRAINING PROGRAM THAT WAS
MENTIONED.
WE ARE REORGANIZING THE WAY WE
GIVE DIRECTORS AWARDS BECAUSE
WE HAVE ALL OF THESE CREATIVE
PEOPLE AROUND THE TABLE WHO
ARE ASKING QUESTIONS AND
LOOKING AT THE DATA AND
HELPING TO THINK IT THROUGH.
>>AND TO THINK THAT WAS SO
SIMPLE WHY DID WE THINK ABOUT
THIS BEFORE?
AND THEN FROM DIFFERENT
BACKGROUNDS TO APPLY FOR
OPPOSITIONS WHY ARE WE SENDING
THIS OUT TO GROUPS THAT ARE
SUPPOSED OF THOSE
UNDERREPRESENTED GROUPS SO
WORKING WITH THE OFFICE OF
HUMAN RESOURCES TO DEVELOP A
LISTSERV OF THE ANNOUNCEMENTS
OF THE OPPORTUNITIES SO THAT
WE CAN SEE AND GATHER DATA AND
SO DATA IS FASCINATING AND
IT'S A CHALLENGE SOME WE HAVE
TO RELY ON SYSTEMS FROM THE
DEPARTMENT THAT IS NOT PARSED
IN A WAY SO WE HAVE TO WORK
WITH THEM SO IT CONTINUES TO
BE A CHALLENGE BUT WE HAVE
ALREADY HAVE GONE SO MUCH IN
NEED TO FIGURE OUT A WAY WITH
THE LESSONS LEARNED FROM THE
AND WITH SOME OF THESE WE HAVE
ALREADY GONE OVER.
>>ONE LESSON LEARNED AS
MONICA WAS TALKING TAKE ME
BACK TO THOSE LISTENING
SESSIONS AND WHERE WE STARTED
YOU LEARNED A TREMENDOUS
AMOUNT WE DID THE LISTENING
SESSIONS ON OURSELVES.
WE STARTED WITH THE YOUTH
COMMITTEE GROUP AND BRINGING
IT TO A FULL UNITE GROUP AND
THE ANTIRACISM STEERING
COMMITTEE AND WHO HAS COME
TOGETHER TO SAY THIS IS
IMPORTANT TO ME AND HAVE THEM
GO THROUGH THE PROCESS.
THESE PEOPLE HAVE BEEN
EMPOWERED TO BE ON A COMMITTEE
OR RAISE THEIR HAND TO
VOLUNTEER TO PARTICIPATE IN
WHAT WE LEARNED THERE ARE
STILL THINGS WE HAVE TO LEARN
TO STRUCTURE THE LISTENING
SESSIONS IN A WAY PEOPLE WERE
COMFORTABLE TO BE SURE THAT
THERE IS NO RETRIBUTION TO
TALK ABOUT THEIR EXPERIENCES
AND WHAT THEY FELT THEY WANTED
TO SHARE.
I JUST WANT TO SAY HOW
IMPRESSIVE IT HAS BEEN ON —-
TO WATCH THE DEVELOPMENT OF
THE UNITE PROJECT AND HOW
BEAUTIFULLY IT HAS BEEN PUT
TOGETHER HOW LOGICALLY AND HOW
POWERFULLY.
BUT WHAT I END UP THINKING IS
IT IS ALWAYS TRUE YOU HAVE
BEEN EMPOWERED TO START THE
EFFORT AND YOU HAVE DONE A
FANTASTIC JOB.
SO HOW DO YOU SUSTAIN THIS?
THE PROBLEM IS SO HUGE AND SO
BROAD AND DEEP END I LOVE
SEEING YOU BRINGING YOUNGER
PEOPLE IT AND THAT IS HUGELY
IMPORTANT A LOT OF PEOPLE
HAVEN'T EXPERIENCED THIS
BRINGING TOGETHER YOU HAVE
DONE THE LAST TWO YEARS AND
THEN BUT OVER DECADES AND THEN
I APPLAUD YOU FOR GETTING IT
STARTED AND I REALLY LOVE I'M
GOING TO START CRYING.
[LAUGHTER]
BUT I LOVE TO SEE THIS AS AN
INTEGRAL MEMBER OF THE GROUP.
>>I HAVE BEEN AT NIH MORE
THAN 35 YEARS AND THIS IS BEEN
ONE OF THE MOST IMPRESSIVE
UNDERTAKINGS I HAVE EVER BEEN
A PART OF EVEN THOUGH AS A
MARATHON IT IS A RELAY SO WHAT
YOU JUST SAW WE HIGHLIGHTED
THE LEADERSHIP CHANGES.
WE DID A SO WE GOT AN
UNDERSTANDING OF HOW LONG THEY
WOULD LIKE TO BE SO WE DO HAVE
A PRETTY GOOD BENCH THAT WE
CAN PULL ON.
AND THOSE THAT ARE READY TO
JUMP ON BOARD.
>>AND A LOT OF VOLUNTEERS.
>>THERE ARE MEMBERS WHO WANT
TO JOIN DIRECTLY INTO UNITE SO
THIS IS ALL HAPPENING.
SO WE CONTINUE TO RUN THE RACE
WE HAVE A ORIENTATION IN
JANUARY FOR THE MEMBERS AS WE
GET THIS FORWARD SO IT HAS
BEEN AMAZING I SEE THAT
CONTINUING TO GO ON FOR A
WHILE THERE ARE SOME HICCUPS
ALONG THE WAY BUT WE HAVE
CERTAIN SET UP TO OVERCOME
THOSE.
>>YOU BRIEFLY MENTIONED THIS
IT WAS HALF A SECOND IN YOUR
SLIDE BUT MAYBE IT'S WORTH
EXPANDING.
TALK ABOUT INTEGRATING DATA
INTO THE STRUCTURE TO ADJUST
WHAT YOU ARE JUST MENTIONING.
>>SO WHEN UNITE STARTED OUT
THERE WAS THE INITIATIVE WITH
A LOT OF SUPPORT FORMALLY INTO
THE NIH GOVERNMENTS WE ARE
WORKING GROUP REPORTING TO THE
NIH DIRECTOR SO WE ARE KEEPING
IT ADD LEVEL NOW SO WE DON'T
LOSE OR HAVE INDIVIDUALS WITH
LESS INTEREST NOW THEY SEE IT
AS VISIBLE WITH ALL THE WORK
GOING ON SO PEOPLE SEE THAT SO
WHEN THEY CONTINUE TO
INTEGRATE INTO THE NORMAL
FABRIC IT IS A PART OF THE
INSTITUTION AND WE HOPE IT'S
NOT A WAY YOU CAN'T FOR A VERY
LONG TIME.
>>I JUST WANT TO SAY THANK
YOU.
WE ALL HAD OUR BLINDERS
REMOVED IN 2020 AND THANK YOU
ALL FOR YOUR LEADERSHIP BUT
THANK YOU SO MUCH FOR CREATING
SPACE SO THAT PEOPLE COULD
FOCUS ON MOVING THIS ISSUE
FORWARD.
THERE ARE PLENTY OF POINTS IN
2020 I DID NOT HAVE A LOT OF
HOPE THERE WOULD BE MASSIVE
TRANSFORMATION IN THE SYSTEM
IN THE ROLE YOU HAVE PLAYED
HAS MEANT A GREAT DEAL.
THANK YOU TO THE COMMITTEE AND
ALL THE PEOPLE WHO ARE DOING
TREMENDOUSLY DIFFICULT WORK TO
BRING ABOUT THIS CHANGE THESE
ARE AT THE HEART OF THE WORK
OF WHAT WE DO REMOVING
BARRIERS AND EQUALLY AS
IMPORTANT TO MAKE SURE THAT
SCIENCE BENEFITS EVERYBODY YOU
SHOULD BE REALLY PROUD OF THE
WORK SPENDING SOME TIME TO
BRING ABOUT SYSTEMS
TRANSFORMATION TO SUPPORT
SCIENTIST WITH JUDITH ON THE
COMMITTEE BUT ALSO TO THINK
ABOUT HOW TO SUPPORT YOUNG
POSTDOC AND AS SOME OF THOSE
EFFORTS I HAVE NOT BEEN
INCREDIBLY SUCCESSFUL TO BRING
ABOUT CULTURE AND SYSTEMS
CHANGE.
WHAT ARE THE BEST PRACTICES WE
SHOULD BE LEARNING?
YOU SIMPLY SIMPLY HAVEN'T
TRANSFORMED NIH BED BIOMEDICAL
ENTERPRISE BUT WITH A HANDBOOK
OR A TRAINING SESSION, WHAT
WORD YOU TELL US HOW TO
APPROACH IT?
WHO SHOULD BE BRING IN OR WHO
TO ADVANCE THESE ISSUES?
>>AND TO HAVE THE LEADERSHIP
AT THE TOP FOR SURE.
BUT ONE OF THE MOST IMPORTANT
COMPONENTS IS THAT USUALLY
WHEN WE SET UP IN INITIATIVE
ALL THOSE HIGH-LEVEL PEOPLE
AND THEN DECIDING TO LOSE
PEOPLE FROM ALL LEVELS TO GIVE
A LOT OF DIFFERENT
PERSPECTIVES SO THEN VERY
QUICKLY THEY REMIND US WE HAVE
NOT BEEN MUCH AT ALL AND THOSE
INDIVIDUALS WHO BROUGHT THAT
TO THE TABLE LISTENING FROM
THESE COMMITTEES THINKING WE
HAVE NOT THOUGHT OF THAT.
I HAVE A LOT OF HIGHFALUTIN
FOLKS WITH STUFF BEHIND THEIR
NAME BUT THEY DON'T HAVE
NEARLY AS MUCH THAT LIVE THE
DAY TODAY WITH THAT
PERSPECTIVE.
PUT THAT TOGETHER WITH
LEADERSHIP NOT ONLY WILLING TO
INVEST TIME THAT TALENT AND
FUNDING TO MAKE THAT HAPPEN
THAT'S WHEN YOU GET SOMETHING
DONE TO MAKE THE CHANGE WE ARE
TALKING ABOUT.
>>IF I CAN ADD TO THAT TO THE
CREDIT OF OUR LEADERSHIP NOT
ONLY ESPOUSED VALUES THAT
PEOPLE ARE HELD ACCOUNTABLE.
YOU HAVE TO HAVE THAT SO TO
HAVE THAT DEA A EXPECTATION OF
THE EXECUTIVE PERFORMANCE PLAN
AND THAT CASCADES DOWN EVERY
SINGLE STAFF MEMBER HAS THIS
AS WELL SO TO BE HELD
ACCOUNTABLE FOR THE BOTTOM-UP
OR THE TOP-DOWN NOT ONE THING
THAT ALL OF THE THINGS.
>>IN ADDITION TO THOSE POINTS
A READY-MADE, YOU NEED TO
OFFER FORMAL TRAINING TO NOT
ONLY READERSHIP BUT
PARTICULARLY BUT I HAVE TO SAY
THAT WE ARE NOT BORING YOU
WITH OUR OWN PERSONAL
STORIES.
I THOUGHT I UNDERSTOOD ALL OF
THIS.
I REALLY DID.
AND NOT UNTIL I WENT THROUGH
FORMAL TRAINING THAT I
REALIZED I HAVE THIS ALL
WRONG.
IT WAS A VERY COMPLICATED
MOMENT FOR ME BECAUSE I WAS SO
SURE I HAD THIS ALL FIGURED
OUT.
I THINK MONICA SAID WE CREATED
A SAFE SPACE NOT ONLY FOR
STAFF TO STAFF ENGAGEMENT BUT
TO LEADERSHIP AND WE HAVE BEEN
REALLY FORTUNATE A NUMBER OF
OUR STAFF HAVE HAD THE COURAGE
TO KNOCK ON THE VIRTUAL DOOR
TO SAY WE REALLY NEED TO HAVE
A TALK.
A CANDID TALK AFRICAN-AMERICAN
GROUP AND THE ASIAN PACIFIC
ISLANDERS GROUP WE HAVE HAD
ALL THE GROUPS COME TO
LEADERSHIP AND INDIVIDUALS AND
THOSE WHO HAD THE COURAGE TO
SAY WHAT NEEDED TO BE SAID.
THERE IS NO ONE THING BUT
OFFERED IT BUT THEN TO STAY
THE HECK OUT OF THE WAY AND
APPARENTLY —- EMPOWER THEM TO
DO WHAT THEY NEED TO DO.
>>AND TO CONTINUE HEARING
FROM THEM BECAUSE ONE OF THE
THINGS THAT WE LEARNED TO
REINFORCE IS NOT A ONE OFF FOR
ONE AND DONE WE DID A
LISTENING SESSION WITH THE
STAFF OR THE TEAM AND NOW WE
KNOW ALL THE ISSUES.
WE CONTINUE TO HAVE LOTS OF
ENGAGEMENT AND WORKING ON WAYS
TO FIGURE OUT THE BEST WAYS TO
ENGAGE PEOPLE TO HEAR THAT
INFORMATION AND GATHER THAT.
>>WHEN I WAS GOING TO SAY
FOLLOWS DIRECTLY ON THAT POINT
WHICH IS THE ONGOING
ENGAGEMENT NOT ONLY WITHIN NIH
BUT OUT THERE IN THE
EXTRAMURAL WORLD WITH THE
INSTITUTIONS TO HAVE
COMPLIANCE AND A REGULATION
THAT PEOPLE DO CULTURE CHANGE
MAINLY FROM TALKING TO EACH
OTHER AND THAT WORKS A LOT
BETTER THAN THAT COMPLIANCE
STICK.
PEOPLE SHARING THEIR
EXPERIENCES STRUGGLE WITH
FIGURING IT OUT.
SO IT IS IMPRESSIVE AND
RESONATES FOR A LOT OF US WITH
THAT KIND OF EXPERIENCE.
SO TO TALK ABOUT THE
SUSTAINABILITY OF THE FORWARD
PROGRESS DOING THAT WITH THE
EXTERNAL COMMUNITY AND THEN
THAT LEADS TO THE MICRO POINT
THAT IS NOT SO MICRO THAT AS
THE POSTDOC STUDY BEGINS IN
WHAT CONCERNS STUDENTS WE HAVE
FROM THE INTERNATIONAL GROUP
AND ONE OF THE GROUPS THAT I
FIND IS BAFFLED AND CONFUSED
AND HAVING A DIFFICULT TIME
ARE PEOPLE EXPERIENCING A
CULTURE SHOCK AND FOR
SOMETHING TO UNDERSTAND
SOMETHING AS GENERATIONAL NOT
ANY GOOD SPECIFIC GUIDANCE OF
WHERE YOU START WITH THAT
WHICH IS A GOOD DOABLE
CULTURAL STEW.
I IT COMES AS WE CONSIDER THE
POPULATIONS GOING FORWARD ON
—- THINK UTAH THOSE WHO
PRESENTED TODAY WE ARE VERY
GRATEFUL.
WE WILL KEEP THIS GOING.
IT'S TWO IMPORTANT.
OKAY YOU HAVE HUNG IN HERE FOR
TWO SOLID DAYS TALK ABOUT
MARATHONS.
I REALLY DO APPRECIATE THE
INCREDIBLE AMOUNT OF TIME THE
MEMBERS MAKE FOR US BUT THIS
IS A COMMITTEE THAT REALLY
MAKES A DIFFERENCE AND THOSE
OF YOU WHO ARE CYCLING OFF SO
WHEN THE CALL OR E-MAIL COMES
IN THOSE NEW TO THE COMMITTEE
HOW MUCH IMPACT YOU CAN HAVE
ON THIS COMMITTEE.
I DON'T KNOW WHAT ALL THE
TOPICS WILL BE BECAUSE THE
THING YOU ARE MOST CONSUMED
WITH WITH YOUR TENURE HAS NOT
BEEN DEFINED YET IT'S JUST THE
WAY IT IS.
BUT I AM ABSOLUTELY CERTAIN
THERE WILL BE VERY IMPORTANT
TOPICS TO GRAPPLE WITH WE
LAUNCHED A COUPLE YESTERDAY
BUT THAT'S JUST A COUPLE THERE
WILL BE MANY MORE THAT FOLLOW
SO AGAIN, THANK YOU ALL AND
THOSE OF YOU WHO TRAVEL, SAFE
TRAVELS HOME AND IF YOU ARE ON
ZOOM BEST WISHES GOING
FORWARD.
HAPPY HOLIDAY SEASONS IT TOOK
TWO DAYS BUT I WILL HIT THIS.
WE ARE ADJOURNED.
[LAUGHTER]
>>THANK YOU SO MUCH FOR ALL
OF YOUR WORK.