>> HELLO, GOOD MORNING,
EVERYONE.
THIS IS THE SECOND DAY OF OUR
TWO-DAY MEETING OF COUNCIL OF
COUNCILS.
WE'RE NOW IN SESSION AND I WANT
TO WELCOME EVERYONE BACK THIS
MORNING.
BEFORE WE JUMP IN I JUST WANTED
TO RECAP A FEW OF THE KEY ITEMS
WE HEARD YESTERDAY.
WE THANK ALL FOR YOUR THOUGHTFUL
COMMENTS.
JUST TO RUN THROUGH A FEW QUICK
THINGS FOR THE PROGRAM CONSENT.
WE HEARD ABOUT SOME OF YOUR
COMMENTS AROUND THE DISTRIBUTION
OF AWARDS AND PROMOTING
DIVERSITY AND TRAINING.
FOR THE VENTURE SPACE INITIATIVE
WE DEFINITELY HEARD YOUR
THOUGHTFUL ASSESSMENT AROUND
EQUITY, TRANSPARENCY, ONLY
GAUGING WITH THE SCIENTIFIC
COMMUNITY.
MONITORING AND AN APPROACH TO
RISK AND IMPACT.
AND REGARDING COMPLIMENTARY, WE
HEARD YOUR ENTHUSIASM WITH
EMPHASIS ON AREAS OF HIGH NEED
AND IMPACT AND TARGETING
DIFFERENT AREAS OVER TIME AND
OPPORTUNITIES FOR EFFICIENCY AND
SYNERGY ARE GOING TO BE KEY FOR
THAT PROGRAM.
WE'RE EXCITE ABOUT THE PROPOSED
ADDITION OF ALL OF US AND
INCLUDE IN THE DPCPSI AND
WORKING MUCH MORE CLOSELY WITH
THEM AND APPRECIATED HEARING
YOUR IDEAS HOW TO COLLABORATE
MORE CLOSELY.
AND IN THE OPEN DISCUSSION I
KNOW I REALLY VALUED AND
APPRECIATED YOUR THOUGHTS ON
SPECIFIC WAYS WE CAN MORE
CLEARLY COMMUNICATE AND ENGAGE
WITH YOU ALL BOTH DURING AND
BEFORE MEETINGS INCLUDING THINGS
LIKE CLOSING THE LOOP ON TOPICS
DISCUSSED WITH THE COUNCIL AND
CONTINUING OPEN DIALOGUE
CONVERSATIONS AND WE WERE REALLY
THRILLED ABOUT THE UNANIMOUS
AGREEMENT ON ONE THING IN
PARTICULAR AND THAT'S AN
IN-PERSON MEETING IN SEPTEMBER.
SO TODAY OUR AGENDA IS ALSO SORT
OF JAM PACKED THOUGH WE GET OUT
A LITTLE BIT EARLIER, WE'RE
GOING TO HEAR AN UPDATE FROM THE
NEW NIH DIRECTOR DR. MONICA
BERTAGNOLLI AND HEAR TWO TALKS
THAT COVER UPDATES FROM DPCPSI
PROGRAMS AND HEAR ABOUT
CLEARANCES.
ONE WILL HAVE AN OVERVIEW OF A
STRATEGIC PLAN AND WE'LL BRING
FORWARD FOR YOUR CONSIDERATION
AND VOTE WHETHER OR NOT WE
SHOULD ESTABLISH A NEW COUNCIL
WORKING GROUP.
AND WE HOPE TO GET ALL THIS DONE
TODAY BY 3:15.
SO OUR FIRST PRESENTATION TODAY
IS AN UPDATE FROM OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCES
RESEARCH OR OBSSR AND DR. J
DR. JANECY -- JANE SIMONI WILL
GIVE AN UPDATE ON THE OBSSR
STRATEGIC PLAN.
WITH THAT I'LL PASS IT OVER TO
JANE.
>> OKAY.
I AM THRILLED TO BE ABLE TO TALK
TO YOU ALL ESPECIALLY EARLY IN
THIS DAY AND THOSE ON THE WEST
COAST GRAB A CUP OF COFFEE
DURING THE PRESENTATION.
BEFORE I TALK ABOUT THE OFFICE
OF BEHAVIORAL AND SOCIAL
SCIENCES RESEARCH I'LL TELL YOU
A LITTLE BIT ABOUT MYSELF.
I CAME HERE IN JULY OF THIS YEAR
SO WELCOMING ME TO THE POSITION
AS A CLINICAL PSYCHOLOGIST AND
SPENT MOST OF MY CAREER WORK IN
ACADEMIA AND IN THE LAST 23
YEARS I WAS AT THE UNIVERSITY OF
WASHINGTON WHERE I DIRECTED OUR
TRAINING PROGRAM AND CO-LED OUR
CENTER FOR AGE RESEARCH AND
MENTAL HEALTH AND HIV CENTER.
AND OTHER DISORDERS AND DISEASES
AND BIO MEDICAL AND BEHAVIORAL.
AND TODAY I'M GOING TO TELL YOU
A LITTLE BIT ABOUT OUR STRATEGIC
PLAN FOR THE OFFICE AND I
THOUGHT FOR THE NEW FOLKS I
SHOULD MAKE THIS A BIT BROADER
SO I'LL GIVE BACKGROUND AND TALK
ABOUT THE OFFICE OF GENERAL AND
THOUGH YOU MAY HAVE BEEN ON THE
COUNCIL A BIT YOU MAY NOT KNOW A
LOT.
FRANCIS COLLINS WHEN HE
REFLECTED ON HIS TENURE AT THE
NIH SAID MAYBE WE UNDER INVESTED
IN RESEARCH ARE IN HUMAN
BEHAVIOR AND ONE IN FIVE
AMERICAN ADULTS HAVE NOT
RECEIVED ANY COVID VACCINE.
I THINK ABOUT MY OWN RESEARCH
AREA OF HIV WITHOUT ATTENTION TO
BEHAVIORAL AND SOCIAL SCIENCES
RESEARCH, THE GREATEST BIO
MEDICAL BREAKTHROUGHS CAN FALL
SHORT AND PREP COULD BE A GAME
CHANGER AND THERE'S INITIAL
RESISTANCE FROM A LOT OF HIV
CARE SYSTEMS AND STIGMA FROM THE
COMMUNITY ABOUT WHAT IT MEANS TO
BE ON PREP AND OUR NEW NIA
DIRECTOR SAID IN TRIALS IS
TESTING MICROBECIDES FOR WOMEN
AND WE LOOKED AT THE BEHAVIORAL
COMPONENT AND WHEN YOU TALK
ABOUT HUMAN BEINGS THERE'S NO
SUCH THING AS THE BIOMEDICAL
INTERVENTION THEY'RE
BIO-BEHAVIORAL INTERVENTIONS.
AND ACROSS MULTIPLE AREAS IN
WHICH BEHAVIORAL AND SOCIAL
SCIENCES HAS HELPED TO SHAPE
POLICIES AND IMPROVE HEALTH
OUTCOME.
WHETHER SMOKING, HIV, PHYSICAL
ACTIVITIES AND CONDITIONS THAT
INSTITUTE AT NIH FOCUS ON AND
IT'S IN TERMS OF WHAT YOU CAN
TELL US ABOUT HUMAN BEHAVIOR
THAT CAN INFORM THE
INTERVENTIONS WE DO AND THE
UPTAKE OF THE INTERVENTIONS AND
EVENTUALLY HOW POLICY SHOULD BE
ROLLED OUT TO HAVE THEM HAVE THE
BEST AFFECT.
SO A LITTLE BIT OF OUR OFFICE ON
BEHAVIORAL AND SOCIAL SCIENCES
RESEARCH WHERE OUR MOTTO IS
HEALTHIER LIVES THROUGH BEHAVIOR
AND SOCIAL SCIENCES.
CONGRESS STARTED AND CREATED THE
OFFICE IN 1993 WITH SUPPORT OF A
LOT OF THE RESEARCH COMMUNITY
AND WAS CHARGED WITH
COORDINATING ALL THE HEALTH
RELEVANT BEHAVIORAL AND SOCIAL
SCIENCES AT THE THE NIH AND
IDENTIFY GAPS AND CHALLENGE AND
OPPORTUNITIES TO ADVANCE THE
SCIENCES HERE.
IN RECOGNITION OF THE IMPORTANCE
OF BEHAVIORAL AND SOCIAL
SCIENCES ACROSS THE INSTITUTES,
CONGRESS ESTABLISHED THE OFFICE
WITHIN THE OFFICE OF THE
DIRECTOR OF NIH AND WITHIN THE
DIVISION A PROGRAM COORDINATION
PLANNING AND STRATEGIC
INITIATIVES WHICH TARA SCHWETZ
NOW DIRECTS.
THE PAST OBSSR DIRECTORS AND
GROUP OF SCIENTISTS AND I'VE HAD
THE PRIVILEGE OF HAVING THEM
HAVE PERSONAL CONSULTATION ABOUT
MY ROLE AND ABOUT OUR NEW
STRATEGIC PLAN FOR THE OFFICE.
THE LEADERSHIP IS ALSO NEW.
I CAME IN JULY AND JANINE
SIMMONS JOINED US AS OUR NEW
DIRECTOR AND SHE'S A
PSYCHIATRIST AND SCIENTIST AND
WINDY SMITH IS AN EXPERIMENTAL
PSYCHOLOGIST AND SERVES AS OUR
ASSOCIATE DIRECTOR WITH US OVER
10 YEARS AND I'D LIKE TO SAY WE
HAD A RELATIVELY GLAD STRUCTURE
BUT SINCE ADDED SCIENTIFIC
DEVELOPMENT AND COORDINATION
WHERE OUR HEALTH SCIENTISTS ARE
INVOLVED AND ROZ KING AND KATIE
MOIRS IS IN OUR SECTION OF
POLICY, PLANNING AND ANALYSES IN
WHICH OUR ANALYSTS WORK.
I WANT TO TAKE TIME TO REALLY
RECOGNIZE THE INCREDIBLE STAFF
THAT WE HAVE WITH OBSSR.
I THINK IT'S TRUE WITH EVERY
INSTITUTE AND ESPECIALLY IN OURS
WE HAVE UNLIMITED RESOURCES AND
THE DEDICATED STAFF AND THE
MULTI-DISCIPLINARY NATURE OF
WHAT THEY DO AND THEIR ABILITY
TOFY -- TO IDENTIFY GAPS ENABLES
US TO HAVE BIG IMPACT WITH
MODEST RESOURCES.
WE ARE HIRING AND WE ARE LOOKING
FOR FOLKS BOTH WITHIN THE NIH
AND OUTSIDE AS WELL.
OUR BUDGET IS ALMOST $41 MILLION
A YEAR STILL WAITING AS ELSE IS
FOR OUR NEXT YEAR'S BUDGET AND
WE HAD A BIG JUMP DURING COVID
WHICH WE'RE THANKFUL FOR.
75% TO 80% OF OUR BUDGET GO TO
CO-FUND THE HIGH QUALITY
BEHAVIORAL SOCIAL SCIENCE FOR
OUR MISSION AND OUR CO-FUNDING
ALSO HAS INCREASED OVER TIME
WITH THE JUMP BETWEEN 21 AND 22.
THE NEXT SLIDE CAN TELL YOU
WHERE THE CO-FUNDING GOES.
WE FUND ALMOST EVERY SINGLE
INSTITUTE THAT OFFERS GRANTS AT
THE NIH AND NIH GETS THE MOST OF
OUR FUNDING BUT EVEN THE OTHER
INSTITUTES HAVE A SIZABLE
PROPORTION OF BEHAVIORAL AND
SOCIAL SCIENCE AND WE HAD
COMMUNICATION AND I'M SURE KATIE
IS NOT A POSITION SHE WANTS TO
BE IN IN THIS SLIDE.
IN TERMS OF WHAT WE FUND, THERE
ARE A FEW PRIORITY AREAS THAT
WERE BROAD IN TERMS OF WHAT WE
LOOK AT AND WE FUND RESEARCH
GRANTS AND CONFERENCES AND
TRAINING GRANTS AND ANYTHING WE
THINK HAS THE POTENTIAL TO FILL
THE GAPS WHERE THEY'RE NEEDED AT
NIH ONE LOOKS AT INTERVENTIONS
AS WELL AS THE MECHANISM WHY THE
INTERVENTIONS WORK FROM THE
BASIC BEHAVIOR TO PHYSIOLOGICAL
AND THE APPLIED ASPECT OF THESE
INTERVENTIONS.
WE'RE INTERESTED IN SOCIAL
CONNECTION AND HEALTH IN LINE
WITH THE SURGEON GENERAL'S
RECORD WITH LONELINESS OVER THE
PANDEMIC AND LOOKING AT SOCIAL
RELATIONSHIPS AND HEALTH.
WE LOOK AT NOT AT THE INDIVIDUAL
LEVEL BUT SOCIAL DETERMINATES OF
HEALTH, BROADER FACTORS THAT MAY
HAVE AN IMPACT ON HEALTH AND
THIS INTEGRATION OF BEHAVIORAL
AND SOCIAL SCIENCES RESEARCH
INTO THE BIO MEDICAL RESEARCH
ENTERPRISE.
THERE'S BEHAVIORAL COMPONENT.
A LOT OF THE RESEARCH WE LOOK AT
NEGLECTS TO CONSIDER -- AND WE
WANT TO INTEGRATE AND LEVERAGE
THE BILLIONS OF DOLLARS THE
OTHER INSTITUTES HAVE WITH OUR
MONEY TO BE ABLE TO HAVE A
BROADER IMPACT.
SO OUR FOURTH STRATEGIC PLAN WE
HAVE AN OUTCAN LINE WE HAVE WITH
A MISSION OF VISION AND
STRATEGIC PRIORITIES ACROSS
THREE AREAS AND CROSS-CUTTING
THEMES AND A WANT TO GO OVER OUR
PLAN THE FOURTH PLAN BUILT ON
THE THIRD PLAN OF BILL RILEY'S
AND CHARGED FROM CONGRESS WITH A
STRATEGIC MISSION AND CAN'T
CHANGE THEM TOO BROADLY BUT I'LL
TALK ABOUT CHANGES WE MADE.
WE TOOK A TWO-YEAR STRATEGIC
PLAN PROCESS WHICH BEGAN BEFORE
I GOT HERE AND ASSESSED THE LAST
PLAN AND THE THIRD PLAN AND HAD
TWO REQUESTS FOR INFORMATION AND
WE HAD OUTREACH AMONG THE
EXTRAMURAL RESEARCH COMMUNITY
AND OTHER EXTRAMURAL
COLLABORATORS AS WELL AS
LISTENING SESSIONS WITH NIH,
STAFF AND LEADERSHIP AND GOT
FEEDBACK FROM OUR STEERING AND
COORDINATING COMMITTEE ACROSS
NIH WITH REPRESENTS FROM ALL THE
INSTITUTES.
WE ALSO HAD A VERY IMPORTANT
WORKING GROUP OF THIS COUNCIL TO
LOOK AT THE OPPORTUNITIES FOR
BASIC, BEHAVIORAL AND SOCIAL
SCIENCES PARTICULARLY THE BASIC
AND THE INTEGRATION, HOW BEST TO
INTEGRATE BEHAVIORAL AND SOCIAL
SCIENCES AT THE NIH WHICH BECAME
APPARENT DURING THE PANDEMIC AND
WE'RE IMPLEMENTING AND TRACKING
THE METRICS OF THE PROPOSED.
OUR MISSION IS TO ENHANCE THE
IMPACT OF THE BSSR AND
COORDINATE AND INTEGRATE
BEHAVIORAL AND SOCIAL SCIENCES
ACROSS THE NIH AND TO
COMMUNICATE OUR FINDINGS TO
STAKEHOLDER WITHIN AND OUTSIDE
THE FEDERAL GOVERNMENT.
SO ENHANCE, COORDINATE,
INTEGRATE AND COMMUNICATE OUR
KEY MISSION.
NEXT, I CREATED A VISION THIS
YEAR WE'RE WORKING ON
WORDSMITHING BUT A WORLD WITH
SYNERGISTIC INTEGRATION OF THE
BSSR LEADING TO INNOVATIVE
SCIENTIFIC DISCOVERY,
EFFICACIOUS INTERVENTIONS AND
EQUITABLE IMPLEMENT STRATEGIES
TO IMPROVE HEALTH FOR ALL.
OUR PRIORITIES, WE HAVE THREE
MAIN PRIORITY.
THE FIRST IS SYNERGISTIC INQUIRY
WHICH FOCUSES ON THE
INTERGRATION OF BEHAVIORAL AND
SOCIAL SCIENCES OF EVERY ASPECT
OF THE NIH WHERE IT'S ROELEVANT
AND HELPFUL AND CATALYST A
CUMULATIVE KNOWLEDGE BASE AND
IMPROVE SYNERGY OF BASIC AND
APPLIED BSSR.
DOES NIH JUST DO HEALTH
INTERVENTIONS OR APPLIED WORK?
WE'RE INTERESTED IN BASIC WORK
PHYSIOLOGICALLY AND NEUROSCIENCE
AND COGNITIVE AND SOCIAL ASPECTS
OF BASIC BSSR.
AND INVESTIGATIONAL INNOVATIONS
AND METHODS AND RESEARCH
MEASURES, DESIGNS, EXPERIMENTAL
DESIGNS AND DATA ANALYTICS LIKE
A.I. FOR BSSR AND IMPLEMENTATION
IMPACT AND WHAT GOOD IS THE
INTERVENTION AND BASIC RESEARCH
IF THERE'S NO WAY TO ACCELERATE
THE ADOPTION INTO PRACTICE AND
POLICY.
SOME EXAMPLES OF COORDINATION
INTEGRATION AND I'LL SPEED UP TO
HAVE TIME FOR QUESTIONS.
WE CO-FUND PROGRAMS AND HAVE
STAFF LIAISONS WITH THE ICUs
I HAVE DIRECT COMMUNICATION WITH
THE OTHER LEADERS AND HAVE DONE
A LISTENING TOUR FOR MOST OF THE
FIRST ROUND OF THIS ALREADY AND
WE'LL BE CONTINUING THAT THIS
YEAR.
WE'RE INVOLVED IN NIH-WIDE
INITIATIVES.
WE HAVE THAT INTEGRATION REPORT
WE'RE WORK ON METRICS FOR.
WE HAVE ANALYTIC TOOLS.
OUR ANALYSTS LOOKING AT ALL THE
DATA AT NIH-FUNDED RESEARCH TO
SEE WHERE THERE'S GAPS AND
OPPORTUNITIES.
WE ALSO HAVE NOFOs, NOTICE OF
FUNDING OPPORTUNITIES AND HELP
WITH THE PRACTICE TRAINING MANY
HAVE TAKEN.
WE LOOK AT THE IMPACT OF HEALTH
ECONOMICS RESEARCH AND HOW MUCH
WAS BEING DONE THE NIH.
WE HAVE WEBINARS ON OPEN SCIENCE
AND WE DO CONFERENCES ON THINGS
LIKE THE FUTURE OF WORK AND
FUTURE OF SCIENTIFIC
CONFERENCING.
WE HAVE INITIATIVES INCLUDING
THE VIOLENCE RESEARCH INITIATIVE
CONGRESS GAVE US $12 MILLION
GAVE US TO LOOK AT HOW TO SPEND
AND PREVENT VIOLENCE AND HAD A
PROJECT DURING COVID LOOKING AT
VULNERABLE AND HEALTH DISPARITY
POPULATIONS.
WE HAVE A BRAIN INITIATIVE SO A
LOT OF OUR WORK IS IN
NEUROSCIENCE AS WELL AND IN
BASIC SOCIAL SCIENCES.
WE HAD AN COMMON FUND
OPPORTUNITY AND THAT HAS MORPHED
INTO A GROUP ON BASIC BEHAVIORAL
AND SOCIAL SCIENCES RESEARCH.
WE HAVE A BEHAVIORAL ONOLOGIST
GROUP WITH THE NATIONAL SCIENCES
RECORD LOOK AT HOW WE TALK ABOUT
BEHAVIORAL SCIENCE IF WE CAN'T
TALK ABOUT IT AND TRACK IT WE
CAN'T BEST SEE HOW TO FIND THE
GAPS AND OPPORTUNITIES AND WE'RE
DOING WORK IN TEAM SCIENCE ALONG
WITH OTHER INSTITUTES.
WE HAVE ANOTHER GOAL TO DEVELOP
AND DIVERSIFY THE BSSR
WORKFORCE.
WE FUND T-32 AND DATA ANALYTICS.
THERE'S A LOT OF NEED AND
ADVANCED ANALYTICS FOR
SPECIFICALLY ON BEHAVIORAL AND
SOCIAL SCIENCES AND WE'RE MAKING
SURE GRADUATE STUDENTS ARE
TRAINED IN THIS.
WE HAVE SHORT COURSES ON
METHODOLOGIES AND APPROACHES AND
WERE ABLE TO FUND SIX THIS YEAR
ALREADY AND HAVE SUPPLEMENTS
WE'RE WORKING ON TO FUND
RESEARCH THAT CAN INTEGRATE
BSSR.
OUR SCIENTIFIC PRIORITIES IN
TERMS OF OPERATION WITHIN THE
INSTITUTE AND APPLY ACROSS THE
WORK WE DO.
WE HELP UPHOLD THE VALUES OF
DEIA AND WANT TO BUILD EQUITABLE
PARTNERSHIPS AND COLLABORATIONS
WITHIN AND OUTSIDE NIH AND
IMPROVE OUR COMMUNICATION
CHANNELS INSIGHT AND OUTSIDE.
WE HAVE A COORDINATING
COMMITTEE.
SOME MIGHT RECOGNIZE SOME OF THE
NAME OF THE FOLKS ON THE
DIFFERENT INSTITUTES.
THIS IS IMPORTANT TO US.
WE MEET ALMOST MONTHLY TO MAKE
SURE WE'RE IN TOUCH WITH THE
INSTITUTES AND HOW TO HELP WITH
THEIR MISSION.
AND COMMUNICATIONS.
WE HAVE A RESEARCH FESTIVAL
EVERY YEAR AND HIGHLIGHT THE
RESEARCH AT NIH ON BEHAVIORAL
AND SOCIAL SCIENCES AND
DIRECTOR'S WEBINAR AND MONTHLY
NEWSLETTER AND TIME LINE AND
HISTORY AND WORKING OTHER WAYS
TO INCREASE OUR SOCIAL MEDIA
PRESENCE WITH.
WE WILL BE STARTING THIS MONTH.
AND A CROSS-CUTTING THEME IS
HEALTH EQUITY.
GIVING ALL PEOPLE A CHANCE AND
EQUAL OPPORTUNITY FOR FULL
HEALTH AND DOING THAT AND THE
TYPES OF RESOURCE WE LOOK AT AND
THE KINDS OF PROGRAMS WE SUPPORT
AND OUR FOCUS ON SOCIAL
DETERMINATES OF HEALTH AND THE
BARRIERS WHICH CREATE HEALTH
DISPARITIES, THAT'S AN IMPORTANT
PART OF OUR WORK.
WE THINK THESE THEMES APPLY IN
WHAT WE DO AND THE RESEARCH WE
SUPPORT.
WE WRAPPED UP AN ONLINE ABUSE
AND HARASSMENT WORKSHOP AND WE
HAVE A WEBINAR ON SOCIAL AND
COMPUTATIONAL SCIENCE WITH
DR. GEBRU AND OBSSR'S NOMINATION
FOR THE LECTURE.
WE HAVE THE MATILDA WHITE RILEY
IN MAY AND WEBINAR IN JUNE AND
IN SEPTEMBER A WEBINAR WITH
DR. EMILY WANG.
THAT'S IT.
DISCUSSION PROMPTS.
DURING THE MEETING WE HAVE A LOT
LESS THAN 10 MINUTES BEFORE
DR. BERTAGNOLLI SPEAKS SO JUST
WANTED TO ASK YOU ALL FOR ANY
FEEDBACK YOU HAVE ON THIS
WHETHER SOME DETAILS OR BROAD
IDEAS OF CHALLENGE TO
OPPORTUNITIES FOR ADVANCING
BEHAVIORAL AND SOCIAL SCIENCE.
I KNOW EVEN IF IT'S WITHIN THE
FIELD EVEN IF IT'S NOT HIGHLY
SPECIFIC TO NIH HOW TO BETTER
COORDINATE IDEAS FOR
PARTNERSHIPS WE MAY HAVE, ANY
TOPICAL AREAS OR METHODS WE
SHOULD FOCUS ON AND PARTICULAR
TRAINING OPPORTUNITIES AND WE'RE
HAPPY TO HEAR ANY DETAILS YOU
HAVE AS ANY BROAD STROKES AND WE
CAN LEAVE THIS SLIDE UP IF IT'S
OKAY WHILE WE GO TO THE
QUESTIONS.
I SEE MONICA, KEVIN AND RICHARD.
>> SORRY, MONICA, I WANTED TO
CLARIFY TO MAKE SURE WE'RE
THINKING APPROPRIATELY ABOUT HOW
MUCH TIME WE HAVE FOR
DISCUSSION.
WE HAVE UNTIL 11:00.
MONICA BERTAGNOLLI WILL JOIN US
AT 11:00 SO WE HAVE A LITTLE BIT
OF TIME FOR DISCUSSION.
I DON'T WANT IT TO BE RUSHED.
NOW I'LL TURN IT OVER TO MONICA
GANDHI.
>> THANK YOU SO MUCH, THAT WAS A
GREAT TALK.
I HAVE TWO QUESTIONS.
IT SEEMED LIKE YOU BROADLY
DIVIDED THE ROLES OF THE OFFICE
INTO WORKING INTO PROPOSALS THE
BEHAVIORAL INVENTIONS THAT WOULD
ACTUALLY ALLOW BIO MEDICAL
INTERVENTIONS TO WORK AND THE
SECOND IS THE PROFOUND KIND OF
SURGEON GENERAL'S WARNING AND
WHAT HAPPENED AFTER THE COVID
PANDEMIC AND ISOLATION.
THOSE ARE DIFFERENT.
MY QUESTION IS HAVE YOU EVER
WORKED IN THE RFAs TO SAY THAT
WE SHOULD BE INCLUDING THE
BEHAVIORAL ASPECT OF TAKING UP
AN INTERVENTION WHEN YOU WRITE
AN RFA JUST LIKE THERE'S
REQUIREMENT TO HAVE CERTAIN
ASPECTS OF HOW YOU DEVELOP A
PROPOSAL HAVE YOU THOUGHT OF
PUTTING IN THERE'S RANTS ABOUT
BIO MEDICAL INTERVENTIONS.
NOW I'LL THINK OF THEM AS BIO
BEHAVIORAL AFTER WHAT YOU SAID
BUT WE DON'T ACTUALLY AREN'T
REQUIRED TO PUT IN AN AROUND THE
BEHAVIORAL SUPPORT TO SEE IF
THAT INTERVENTION SPECIFICALLY
WITH TREATMENT WITH HIV IS GOING
TO WORK.
THAT'S MY QUESTION THAT
LANGUAGE.
AND INTERVENTIONS FOR -- WORKING
ON BOTH DEFINING.
>> YOU READ MY MIND.
JUST YESTERDAY I WAS TALKING BIG
AROUND ARPA-H AND DIRECTLY WITH
THE INSTITUTES BUT IT'S
SOMETHING WE WANT TO DO ABOUT
TALKING ABOUT HOW TO WRITE THE
NOFO'S AND NOSIs EVEN THE ONES
THAT SEEM BIOMEDICAL.
ANYTHING WITH AN INTERVENTION
AND THE NOFO LANGUAGE CAN TALK
ABOUT HAVE YOU TALKED ABOUT
ACCEPTABILITY RESEARCH, WOULD
THAT BE PART OF WHAT YOU'RE
DOING, HAVE YOU THOUGHT ABOUT
WHAT COMMUNITIES YOU'RE GOING TO
DO THE FIRST EVEN PHASE 1 KIND
OF TRIALS WITH MAKING SURE
THEY'LL ULTIMATELY BE
REPRESENTATIVE IN TERMS OF THE
RESULTS.
I THINK THAT IS VERY MUCH AN
IMPORTANT PART OF WHAT WE DO.
WE'RE TREADING LIGHTLY.
WE'RE NOT TRYING TO TELL THE
INSTITUTES ABOUT THEIR NOSIs AND
OUR GROUP HAS A LIAISON AND THE
ICOs HAVE A REPRESENTATIVE TO
OUR COORDINATING COMMITTEE.
IT'S THROUGH THOSE GROUPS WE'RE
HOPING ON THE GROUND TO LEARN
ABOUT AN IDEA OF RFA BEFORE IT
COMES US ALREADY WRITTEN,
ALREADY SENT OUT WITH
APPLICATIONS READY TO BE FUND.
WE WOULD LIKE TO BE INVOLVED
EARLIER ON TO FIND OUT WAYS THAT
WE CAN INCORPORATE BEHAVIORAL
SCIENCE IN A MUCH MORE
MEANINGFUL WAY RATHER THAN DOING
A SUPPLEMENT AT THE END WHERE
MAYBE YOU TAG ON SOMETHING AND
WE HAVE DONE THAT IN DESPERATION
IN SOME WAYS.
I WANT TO START EARLIER TO DO
THAT.
THAT'S A GREAT POINT AND
SOMETHING WE ARE WORKING ON.
IN THE COVID EPIDEMIC
INTERVENTION WE COORDINATE AND
INTEGRATE AND I NEED TO FIND OUT
FIRST WHAT ELSE IS GOING ON,
WHAT OTHER ORGANIZATIONS ARE
INVOLVED IN IT AND THESE ARE NOT
EVEN NIH WIDE.
THEY'RE HHS AND ALL HEALTH AND
HUMAN SERVICE DEPARTMENT WIDE.
WE'RE WORKING BROADLY TO THINK
ABOUT THE BEST WAY TO INTERVENE
IN THOSE AREAS BUT WHILE WE CAN,
WE'VE MADE IT A PRIORITY IN
TERMS OF OUR CO-FUNDING SO NIH
GRANTS THAT LOOK AT THESE SORTS
OF SOCIAL SUPPORT INTERVENTIONS
WILL GET PRIORITY.
I HOPE THAT ANSWERS BOTH OF YOUR
QUESTIONS.
KEVIN.
DR. JOHNSON.
>> WE'LL GO KEVIN, KEN, RICHARD
AN JEAN.
>> I'LL LET YOU CALL.
>> MONICA SAID SO MUCH OF WHAT I
WANTED TO SAY THIS WILL MAKE IT
A NICE CONTINUOUS CONVERSATION.
I NOTICED THE LIST OF AREAS THAT
WERE PRIORITYIES AND ONE OF THE
THINGS I HAVE DISCOVERED IS SO
IMPORTANT TO BE THINKING ABOUT
IN TERMS OF BIO BEHAVIORAL
STRATEGIES IS THE ISSUE OF
POSITION AND BURNOUT.
MANY PEOPLE LOOKING AT THE
CAUSES OF BURNOUT ARE
RECOGNIZING THAT THERE NEEDS TO
BE POLICY CHANGE WITHOUT
ACTUALLY REALLY UNDERSTANDING
THE IMPACT OF THE SPECIFIC
BEHAVIOR THAT WOULD LIKELY BE
CHANGED WITH POLICY AND IT GETS
A LITTLE BIT TO YOUR BEHAVIORAL
ECONOMICS PIECE.
AS I IMAGINE TRYING TO EXPAND
INTO THE AREAS AS YOU JUST SAID,
I'M WONDERING WHETHER THIS IDEA
OF EARLY SUPPLEMENTS OPPOSED TO
LATE SUPPLEMENTS WOULD ALLOW
PEOPLE WHO ARE ALREADY FUNDED TO
DO WORK WHERE IT'S PRETTY CLEAR
THEY'RE IDENTIFYING AN ISSUE
THAT MIGHT BE IN YOUR WHEELHOUSE
TO GET ADDITIONAL FUNDING TO
EXPLORE.
MUCH THE WAY SOME PEOPLE USE
RO3s ATTACHED TO OTHER GRANTS.
I'M WONDERING WHETHER THE ISSUE
OF BURNOUT GENERALIZES TO OTHER
AREAS WHERE YOU IMAGINE
TRANSINSTITUTIONAL WORK TO
SUPPLEMENT EXISTING GRANTS
BEFORE GETTING MORE INVOLVED IN
THE NOFOs THEMSELVES.
>> BURNOUT -- WHICH POPULATION
YOU TALKING ABOUT?
I CAN THINK OF A LOT.
>> SPECIFICALLY TALKING ABOUT
POSITION IN NURSING -- SORRY,
MENTAL HEALTH WORKFORCE.
>> SO HEALTH WORKFORCE.
THAT'S A VERY IMPORTANT TOPIC.
I NEED TO ASK MY FULL STAFF BUT
THAT'S A VERY IMPORTANT IDEA.
PROBABLY WORKING WITH A COVID
GROUP AND I WILL DEFINITELY LOOK
INTO THAT AND I THINK IT'S AN
IMPORTANT AREA AND SOMETHING TO
CUT ACROSS ALL THE I.C.s.
THANK YOU FOR THAT.
IN TERMS OF THE SUPPLEMENTS,
THAT'S GREAT.
THE EARLIER THE BETTER AND IN
SUPPLEMENTS WITH NIH, IT'S KIND
OF HARD TO FUND THE SUPPLEMENTS.
THEY'RE NOT TOTALLY
PEER-REVIEWED WHEN WE DO AN
ADMINISTRATIVE SUPPLEMENT.
WE WANT THE BEST SCIENCE THAT GO
THROUGH RIGOROUS PEER REVIEW.
THAT'S A GOOD IDEA TO DO A
SUPPLEMENT AND DO IT EARLY ON
BUT EVEN BETTER HAVE THE WORK IN
C
-- INCORPORATED INTO A PROPOSAL
THAT GETS PEER REVIEWED.
>> THANK YOU.
>> DR. SIMONI VERY NICE
PRESENTATION AND IMPORTANT WORK.
YOU DIDN'T MENTION ANYTHING
ABOUT YOUR METRICS OF SUCCESS OR
OUTCOMES IN YOUR PRESENTATION.
I JUST WONDER CAN YOU TALK TO
THAT A LITTLE BIT.
HOW DO YOU ASSESS THE
EFFECTIVENESS OF THE RESEARCH
THAT YOU FUND AND MAYBE YOU CAN
TELL US ONE STORY OF THIS IS A
GREAT SUCCESS AS A RESULT OF
YOUR INVESTMENT.
THANKS.
>> THAT'S A GREAT QUESTION.
IN OUR PLAN WE CAN WORK ON THAT
AND CAN ADJUST AND MODIFY YEAR
TO YEAR BUT WE ARE LOOKING AT
THAT.
BASIC GRANTS WE FUND AND WHICH
AREAS AND WHICH INSTITUTES AND
SOME PRODUCTS WE PUT OUT.
THE IMPACT IS HARDER TO LOOK AT.
WE DO HAVE OUR ANALYSTS LOOK AT
THINGS LIKE CITATIONS COMING OUT
OF THE WORK.
HOW MUCH OF THE GRANTS WE'RE
FUNDING ARE GETTING CITED AND
GOING IN THE LITERATURE.
AND IDEALLY I'VE THOUGHT ABOUT
THIS I WOULD LOVE TO HAVE ON A
DASHBOARD A METRIC OF ACTUALLY
COMMUNITY-LEVEL EPIDATA.
I WOULD LIKE TO SAY IF WE'RE
DOING INTERVENTIONS SAY BURNOUT
OR MENTAL HEALTH WE LOOK AT AND
LOOK AT DATA CDC COLLECTS AND
SUICIDALITY AND WHAT WE KNOW NOT
GREAT PSYCHIATRIC EPIDEMIOLOGIC
DATA ON MENTAL ILLNESS.
THOSE WOULD BE HIGH-LEVEL
METRICS.
WE DON'T DO THAT NOW.
THAT'S ASPIRATIONAL TO DO
SOMETHING LIKE THAT BUT I WOULD
LIKE TO DO SOMETHING IN THAT
AREA.
HOW WOULD THAT IMPACT?
IT'S TOUGH TO SHOW CAUSAL
RELATIONSHIP BUT WE DID HAVE
SPECIAL WORK GROUPS ON UPTAKE ON
VACCINATION AND I HOPE IT HAD
SOME IMPACT AND GOT US TO AT
LEAST THE 80% BENCHMARK BUT
GREAT QUESTION AND SOMETHING
WE'RE WORKING ON.
>> I LOWERED MY HAND BUT DIDN'T
UNMUTE AND CONGRATULATIONS AND
ALL THE BEST.
YOU HAVE A CHALLENGING TASK WITH
ONLY 31 INSTITUTES AND TRYING TO
CROSS-CUT ACROSS ALL OF THEM.
IT'S A CHALLENGE.
SOMETIMES DEANS OF MEDICAL
SCHOOLS FACE THIS WHEN THEIR
CENTERS TRY TO INTERACT AND
THERE'S A LOT OF TERRITORY.
MY WORK HAS BEEN CHILD ABUSE AND
NEGLECT.
OVER THE YEARS I SPENT ON THIS
COUNCIL AND NICHD, I'VE WATCHED
SLOWLY BUT STEADILY MORE
RECOGNITION OF THIS ISSUE.
I'M WONDERING HOW BSSR VIEWS
ABUSE AND NEGLECT AND SOME
PLACES IT'S LUMPED IN WITH THE
SOCIAL DETERMINATES OF HEALTH
PROBABLY BECAUSE CHILD WELFARE
HAS HAD THE RESPONSIBILITY FOR
THE PROBLEM FOR 40 YEARS AND
OTHERS IT'S VIEWED AS AN
ANTECEDENT OF MENTAL HEALTH
ISSUES BUT HAVE NEVER SEEN IT
SPECIFICALLY ADDRESSED.
ADVERSE CHILDHOOD EXPERIENCES,
TOXIC STRESS, THERE ARE A LOT OF
DIFFERENT TERMS USED.
I WOND ARER AS YOU HEAD INTO
YOUR TENURE WHAT'S YOUR TEAM'S
VIEW OF IS VIEW HOW TO SORT OUT
THE IMPORTANCE OF PHYSICAL OR
SEXUAL ABUSE, EMOTIONAL ABUSE OF
CHILDREN AND ADD -- ADOLESCENT
LEADING TO ABUSE ISSUES.
>> IT'S AN AREA IN WHICH
RESEARCH HAS AFFECTED POLICY AND
HAS HAD AN IMPACT AT A HIGH
LEVEL.
WHEN I WAS GROWING UP ONE IN
THREE GIRL WOULD HAVE
ENCOUNTERED SEXUAL ASSAULT OR
ABUSE AND IT'S GREAT TO SEE
DIRECT IMPACT IN THE AREA.
I SEE IT ON THE INDIVIDUAL
IMPACTS OF THE SURVIVORS OF
ABUSE AND HOW THEY'RE DISGUISED
AND WHO EXPERIENCES ABUSE AND
THESE ARE THE SOCIAL
DETERMINATES WHERE THE HIGHER
LEVEL FACTORS COME INTO PLAY.
I THINK IT'S A GOOD EXAMPLE OF
THAT.
AND IN OUR OFFICE WE HAVEN'T
SPECIFICALLY LOOKED THAT THE
PARTICULAR TOPIC BUT THIS YEAR
PROPOSED A COMMON FUND
APPLICATION ON AGGRESSION A MORE
BASIC LEVEL OF THIS.
WHAT ARE THE MECHANISMS INVOLVED
IN AGGRESSION DOWN TO
PHYSIOLOGIC AND POTENTIAL IMPACT
ON IMPLEMENTATION AND ON POLICY.
SO VIOLENCE MORE GENERALLY
FIREARM VIOLENCE IS SOMETHING WE
FOCUSSED ON AND AGGRESSION MUCH
MORE BROADLY HAS BEEN THE TOPIC
BUT I'LL BRING THAT BACK TO THE
OFFICE AND FIND OUT WHAT ELSE
WE'RE DOING IN THAT PARTICULAR
AREA.
>> WHEN YOU LOOK AT AGGRESSION I
ENCOURAGE EVERYONE TO LOOK AT
WHAT IS GOING ON WITH THE 3 TO
8-YEAR-OLD BOYS RIGHT NOW IN OUR
SOCIETY IN BECOMING AGGRESSORS
AND HOW CAN WE INTERVENE TO THAT
AND NOBODY PAYS ATTENTION TO
BOYS.
THOUGH THE AVERAGE AGE OF SEXUAL
ABUSE DISCLOSURE IS 53 AND IN
BOYS IT'S NEVER.
I'M PRETTY SURE IT'S AN AND THE
SEEDANT OF WHAT'S GOING ON --
ANTECEDENT OF WHAT'S GOING ON
LATER.
>> ONE QUICK QUESTION AND
LOOKING AT YOUR FIRST DISCUSSION
POINT FROM CHALLENGES TO FOR
EXAMPLE ADVANCING BSSR AT NIH,
WITH SKEPTICISM AND I KNOW
PEOPLE TEND TO MINIMIZE BEHAVIOR
AND NOT UNDERSTAND IT'S SPECIFIC
AND ENDURING AFFECTS ON ALL THE
THINGS WE DO.
I LOVE YOUR LINE FOR EVERYTHING
WE DO FOR HUMANS THERE'S A
BEHAVIOR ATTACHED.
THAT'S MY QUESTION TO YOU BUT
IT'S AN ASIDE.
I WANT TO SEE ARE THERE WAYS AND
I LOOKED AT YOUR FUNDING LEVELS
AND LOOKING AT NIH AND SEE IT'S
LOW ON THE MONEY YOU HAVE TO
SPREAD AND I SEE THE HARDSHIP
THERE AND A THINK OF MOTIVATION
AND COMPLIANCE AND CULTURE AND
ALL THOSE IMPACTS ON BEHAVIOR
AND YOU MAY HAVE IT HERE SOME
PLACE AND I KNOW SOME GET THE
RESOURCES AND I UNDERSTAND WHY
BUT ARE THERE PLACES WHERE IT
GETS SPREAD OVER DIFFERENT I.C.s
OR DO YOU HAVE PILLARS WHERE
THOSE THINGS ARE IMPACTED
BECAUSE BEHAVIOR IS ARE WE
MOTIVATED TO DO IT AND COMPLYING
WITH THE THINGS WE HAVE TO DO
AND THOSE THINGS ARE SQUISHY AND
I DON'T KNOW WHERE THEY RESIDE
AND LASTLY ONE AREA I'M
INTERESTED IN IS CHRONIC STRESS.
I PUT THAT IN THE ALLOSTATIC
LOAD CONCEPT AND FOR THOSE NOT
IN THE AREA A CONCEPT THAT WAS
STARTED BY BRUCE McCUE THAT
STRESS BUILDS ON STRESS AND AT
SOME POINT YOU REACH A BREAKING
POINT AND IMPACTS BEHAVIOR.
I KNOW THAT'S A LOT BUT IF YOU
CAN HELP ME UNDERSTAND WHERE YOU
ARE IN THOSE DOMAINS.
>> TWO AREAS WE WORK ON.
WE HAVE A CROSS-NIH LONG
STANDING NETWORK.
I WAS A PART OF THIS AS AN
EXTRAMURAL RESEARCHER IN
ADHERENCE AND WE EXPANDED IT TO
BASICALLY BEHAVIOR MAINTENANCE.
IT'S BEHAVIOR CHANGE AND
MOTIVATION IS A KEY PART OF
THAT.
WHAT MOTIVATES CHANGE IN
BEHAVIOR AND HOW TO INCREASE THE
FACTORS AND HOW TO FACILITATE
THAT AND THEN HOW DO YOU
MAINTAIN IT.
THAT'S THE FUN PART ABOUT THIS
BECAUSE IT'S A MORE DYNAMIC
PROCESS THAN A STEP.
THE SCIENCE OF HOW BEHAVIOR
CHANGE IS INITIATED AND
MAINTAINED.
AND FACTORS LIKE CULTURE, I
AGREE CUT ACROSS EVERY SINGLE
INSTITUTE.
WE HAVEN'T HAD A PARTICULAR
FOCUS ON IT BUT I THINK AND IT
FITS IN WITH THE SOCIAL
DETERMINATES OF HEALTH AND THE
CO-CHAIR OF OUR COMMITTEE WITH
THE HEAD NURSING AND HAITH
DISPARITIES HERE AT -- HEALTH
DISPARITIES AND HERE AT NIH WORK
ON WHAT THE OFFICE CAN DO.
STRESS IS A HUGE IMPACT AND
THINGS LIKE HEART DISPARITIES
AND STRESS AND IMPACT OF
DISEASE.
WE'RE FOCUSSED ON WORKING WITH
THE CENTER ON INTEGRATIVE HEALTH
REPORT COMPLEMENTARY WHOLE
PERSON HEALTH AND JUST
CONTRIBUTED TO THAT AND I THINK
THAT'S SOMETHING THAT LOOKS AT
INTERVENTIONS AND SOME OF THESE
FACTORS THAT GO BEYOND THE
BIOMEDICAL.
WE LIKE TO FOCUS ON WHILE WE
HAVE THE OPPORTUNITY TO LOOK
MORE AT ACUPUNCTURE, MEDICATION
AND THE WAYS TO INTERVENE WITH
PHYSIOLOGICAL PROCESS OF STRESS.
WE ARE WORKING IN SOME OF THOSE
AREAS.
GREAT QUESTION AND GREAT AREAS
TO LOOK IN DEEP EVEN MORE
DEEPLY.
>> ONE THING I WANT TO THE ADD
TO THAT, TO THE ALLOSTATIC LOAD
FOR MINORITY AND TRAUMATIZED
GROUPS I THINK THAT'S A LITTLE
DIFFERENT SO STRESS IN GENERAL,
CHRONIC STRESS IN GENERAL BUT
CHRONIC STRESS IN PARTICULAR
POPULATIONS MAY LOOK DIFFERENT.
>> YES.
GOOD POINT.
>> AND WHETHER IT'S RESONATING
ACROSS NIH AND I'LL JUST ADD AND
JANE YOU CAN ELABORATE ON THIS
AND I THINK ONE OF THE SILVER
LININGS IN COVID IS THERE WAS
MORE RECOGNITION OF THIS BECAUSE
GOING INTO THAT THERE WAS A BIG
PUSH TO TRY TO GET THE VACCINE
AND TREATMENT AND WE'VE SEEN THE
VARIABILITY AND UPTAKE OF THE
VACCINE.
THAT'S BEEN A REAL-TIME EXAMPLE
OF THE IMPORTANCE OF THIS TYPE
OF BEHAVIORAL AND SOCIAL SCIENCE
FOCUS BECAUSE THE VACCINE IS
THERE AND AROUND AND AVAILABLE
AND THE UPTAKE IS THE REAL
CHALLENGE.
YOU CAN HAVE THERAPEUTIC AND
INTERVENTION, PREVENTION AND HOW
THAT'S COMMUNICATED WITH PEOPLE
IN A SOCIALLY COMPETENT WAY AND
TAKING IN THOSE FACTORS IS
IMPORTANT AND JANE I DON'T KNOW
IF YOU WANT TO ELABORATE WITH
THAT.
>> IT'S MORE POWERFUL COMING
FROM YOU THAN FROM ME.
>> I AGREE.
I LOOK AT THIS AS A GLASS HALF
FULL IT'S YES AND THERE WERE
MAJOR BARRIERS TO LOOK AT THIS
AND WE'RE IN THE DIRECTION WHERE
WE REALIZE IT'S IMPORTANT AND
THERE'S MORE OPENNESS.
I CAN TELL IN MY ONE-ON-ONE
CONVERSATIONS WITH DIRECTORS AND
THE METRICS WE PROVIDE WE'RE NOT
SUPPORTING THIS AND I'M VERY
ENCOURAGED BY WHAT WE'RE SEEING
BUT WE'RE IN THE AREA.
>> ONE MORE HAND AND PROBABLY
WE'LL BE THE LAST QUESTION
LOOKING AT IS THE TIME.
ANNA MARIA.
>> THANK YOU, THERE NEEDS TO BE
MORE INVOLVEMENT AND THE EXAMPLE
OF UPTAKE OF THE VACCINES AND
EVEN UPTAKE OF DIFFERENT
OPPORTUNITIES RELATED TO HEALTH
CARE REALLY INVOLVES DEEP
UNDERSTANDING OF WORKING IN
COMMUNITIES AND WHAT COMMUNITIES
VALUE AND HOW THEY WANT TO BE
INVOLVED IN SOME OF THESE
EFFORTS.
SO IT'S NOT JUST COMMUNICATION
OF SCIENCE BUT REALLY
UNDERSTANDING HOW TO WORK WITH
COMMUNITIES AND HAVING TO REGAIN
THE TRUST THAT'S BEEN LOST BY US
AS SCIENTISTS AND HEALTH CARE
PROFESSIONALS IN COMMUNITIES AND
WITH THE EMPHASIS OF
PARTICIPATORY RESEARCH COMING
FROM THE DIFFERENT NIH
INSTITUTES IS MISSING AND WOULD
BE NICE TO SEE THEM MORE IN
LINE.
>> THAT'S MY STRATEGIC PLAN I
WORKED ON YESTERDAY.
WE ARE DEFINITELY TALKING ABOUT
THAT AND I AGREE WE'RE GETTING
THERE.
I'LL END WHEN I LOOK AT THE
REASON MOST THE NUMBERS ARE
RECOMMENDED FROM THE I.C.s SO
YOU DON'T HAVE A LOT OF
BEHAVIORAL-SOCIAL SCIENCE
EXPERTISE BECAUSE IT'S NOT THE
PRIMARY MISSION BUT THEN WHEN
YOU HAVE THE GROUP OVER ALL IT
MAY BE LOOKING SO THAT'S KIND OF
WHAT HAPPENS AT NIH SOMETIMES.
WE THINK IT'S A MICROCOSM OF
WHAT WE'RE UP AGAINST BUT THANK
YOU VERY MUCH FOR YOUR FEEDBACK
AND INPUT.
>> AND TO SOME DEGREE MANY OF
THE OFFICES WITHIN DPCPSI WE
OFTEN REFER TO THEM AS
COORDINATING OFFICES.
PART OF THEIR MISSION IS TO HELP
FACILITATE THESE TYPES OF
CROSS-CUTTING TOPICS BETWEEN AND
AMONGST ALL OF THE INSTITUTE AND
CENTERS AND TRY TO HELP
FACILITATE THAT BROADER EITHER
INTEGRATION AND/OR COORDINATION.
SO OBSSR HAS A DISTINCT MISSION
WITH THE BEHAVIORAL AND SOCIAL
SCIENCES RESEARCH AND VERY
IMPORTANT AND WE'RE REALLY GLAD
TO HAVE JANE ON BOARD NOW FOR
THE LAST SIX MONTHS OR SO.
SO, WITH THAT THANK YOU VERY
MUCH, JANE.
I APPRECIATE THE PRESENTATION
AND HEARING THE UPDATE ON WHAT
YOU'VE BEEN THINKING ABOUT THE
LAST SEVERAL MONTHS.
AND WE WILL I GUESS TURN IT OVER
TO DR. BERTAGNOLLI.
I'M DELIGHTED TO WELCOME HER AND
HAS SERVED AS NIH DIRECTOR SINCE
NOVEMBER OF LAST YEAR AND PRIOR
TO THAT DATE WAS THE DIRECTOR OF
NCI AND FIRST SURGEON AND SECOND
WOMAN TO HOLD THE POSITION.
WE'RE SO DELIGHTED AND GRATEFUL
THAT SHE IS HERE TO HELP MAKE
SOME TIME TO SHARE HER THOUGHTS
WITH THE COUNCIL AND WITH THAT
I'LL TURN THE FLOOR OVER TO YOU.
>> THANK YOU.
A QUICK SOUND CHECK.
>> PERFECTLY.
>> HELLO.
I AM DELIGHTED TO BE HERE TODAY.
THANK YOU FOR THE KIND
INTRODUCTION I SPENT MOST OF THE
YEAR AS A SURGICAL ONKOL --
ONCOLOGIST AND DIRECTOR OF THE
NATIONAL CANCER INSTITUTE AND IN
BOSTON AND I'VE HAD A CAREER
LONG ADMIRATION FOR NIH AND ALL
IT DOES TO FUND FUNDAMENTAL
RESEARCH AND IMPROVE CLINICAL
CARE.
AND NOW AS THE OPPORTUNITY TO
SERVE AS DIRECTOR I'LL DO MY
BEST TO CARRY ITS HISTORY
FORWARD.
WHAT DREW ME HERE IS THE MISSION
AND THE PEOPLE AND THRILLED TO
BE IN A PLACE WHERE EVERYTHING
REVOLVES AROUND ONE GOAL, TO
IMPROVE THE HEALTH OF PEOPLE
EVERYWHERE.
AND THIS IS MY FAMILY'S HOME IN
WYOMING.
I GREW UP AT THE BASE OF THE
MOUNTAINS YOU SEE ON THE
BACKGROUND ON A RANCH WHERE MY
FAMILY RAISED SHEEP AND CATTLE.
IMPORTANTLY, THE NEAREST
HOSPITAL IS 100 MILES AWAY.
ACTUALLY, THE NEAREST DOCTOR'S
OFFICE IS 100 MILES AWAY.
I WAS INSPIRED BY MY UNCLE WHO
WAS A FRONTIER DOCTOR DURING
MOST HIS YEARS HE TRAVELED
ACROSS THE STATE OF WYOMING AS A
PRIMARY CARE PHYSICIAN FOR THE
VETERANS ADMINISTRATION.
AS A CANCER SURGEON I TACKLED
TUMORS DIRECTLY BY REMOVING THEM
AND ALSO HAD TO FACE THE HARD
FACT THAT SO MANY PEOPLE WITH
DISEASE ARE BEYOND THE SKILL OF
A SURGEON AND I WILL NEVER GET
THE DISEASE MELT AWAY IN
RESPONSE TO IMMUNOTHERAPY OR
COMPLETE REGRESSION OF A
DISSEMINATED SOFT TISSUE
SARCOMA.
THESE EXPERIENCES IN THE CLINIC
LEAD ALL OF US TO BE INCREDIBLY
PASSIONATE RESULT ARE MEANINGFUL
IN THE CLINIC TO TRULY TRANSFORM
LIVES.
FINALLY LAST YEAR I WAS
DIAGNOSED WITH EARLY STAGE
BREAST CANCER SOON AFTER BEING
NAMED DIRECTOR AND PARTICIPATED
IN CLINICAL RESEARCH FROM THE
OTHER SIDE OF THE PATIENT.
FORTUNATELY MY PROGNOSIS IS
EXCELLENT BUT THIS DUE TO
NIH-FUNDED RESEARCH OVER THE
PAST SEVERAL DECADES.
ALTOGETHER MY LIFE EXPERIENCE
HAVE GIVEN ME A POWERFUL SENSE
OF THE TRANSFORMATIVE POTENTIAL
OF RESEARCH FROM MANY
PERSPECTIVES.
ALSO A DEEP APPRECIATION FOR THE
CRITICAL IMPORTANCE OF EQUITY
AND ACCESS BY ALL PEOPLE TO
RESEARCH AND ITS BENEFITS.
YOU CAN SEE THE TOPICS FOR TODAY
AND EXCITED TO PROVIDE AN
INTRODUCTION AND OVERVIEW OF OUR
TOP OF MIND TOPIC FOR TODAY AND
START WITH LEADERSHIP CHANGES.
HOW TO LARRY TABAK FOR SERVING
AS ACTING NIH DIRECTOR AND WHILE
ACTING DIRECTOR, TARA SCHWETZ
SERVED AS THE PRINCIPLE DEPUTY
DIRECTOR.
TARA IS NOW LEADING DPCPSI AND
HELD LEADERSHIP ACROSS THE
OFFICE OF DIRECTOR AND ACROSS
MULTIPLE I.C.s.
I'M THRILLED TO HAVE TARA IN
THIS CRITICAL ROLE AND ALSO
WANTED TO THANK DR. BOB ISINGER
FROM JULY 2022 UNTIL TARA TOOK
OVER RECENTLY.
DR. MARRAZZO COMES AFTER SERVING
AS DIRECTOR OF THE DIVISION OF
INFECTIOUS DISEASE AT THE
UNIVERSITY OF BIRMINGHAM AND WAS
AT UNIVERSITY OF WASHINGTON,
SEATTLE.
WELCOME.
IT WAS NOT EASY FOR ME TO
CONTEMPLATE MOVING OFF MY POST
AS NCI DIRECTOR, AN INSTITUTE I
DEARLY LOVE BUT I AM THRILLED
DR. RATHMELL HAS TAKEN OVER.
SHE'LL BEGIN HER TENURE AS THE
17th DIRECTOR ON DECEMBER 18 AS
AN EXPERT IN KIDNEY CANCER, SHE
IS AN IDEAL CANDIDATE TO LEAD
THE MOONSHOT TO END CANCER AND
WILL DO A BETTER JOB THANE HAVE
AND AM THRILLED TO HAVE HER TAKE
OVER AS SUCCESSOR AND WE HAVE AN
ACTING NCI DIRECTOR AND SO WE
HAVE RETIREMENT, DR. PATTI
BRENNAN RETIRED AS THE DIRECTOR
OF THE NATIONAL LIBRARY OF
MEDICINE AND DR. SHERRY IS NOW
SERVING AS THE ACTING DIRECTOR.
DR. BRENNAN RETIRED AFTER SEVEN
YEARS OF ADVANCING THE ROLE OF
NLM AS THE EPICENTER FOR
BIOMEDICAL DATA SCIENCE AND THE
FIRST NURSE, FIRST INDUSTRIAL
ENGINEER AND THE FIRST WOMAN TO
LEAD NLM.
SHE REALLY STARTED TO INTEGRATE
HEALTH INFORMATION MANAGEMENT
WITH ARTIFICIAL INTELLIGENCE AND
OTHER MACHINE LEARNING AND
DEEP-LEARNING METHODS AND WE'RE
GRATEFUL TO DR. SHERRY FOR
SERVING AS ACTING NLM DIRECTOR
AND PREVIOUSLY SERVED AS THE
DIRECTOR OF NLM'S NATIONAL
CENTER FOR BIO TECHNOLOGY
INFORMATION AND THE ASSOCIATE
DIRECTOR FOR SCIENTIFIC DATA
RESOURCES.
KATE KLIMCZAK SPENT FOUR YEARS
AT FDA SERVING AS DEPUTY
DIRECTOR FOR THE OFFICE
CONGRESSIONAL APPROPRIATIONS AND
ACTING DIRECTOR OF THE OFFICE OF
LEGISLATIVE POLICY SINCE JUNE
2022 AND WAS A SENIOR
LEGISLATIVE ANALYST AND MANAGED
NIH'S INTERACTIONS AND
RELATIONSHIPS WITH THE
CONGRESSIONAL APPROPRIATIONS
COMMITTEE.
I CAN TELL YOU KATE AND I ARE
ACTIVE LITERALLY EVERY SINGLE
DAY IN HER IMPORTANT ROLE FOR
NIH AND I WILL ALSO SAY WE'RE
GRATEFUL TO LAUREN HIGANS FOR
ACTING DIRECTOR AND CONTINUING
IN HER ROLE AS THE DEPUTY
DIRECTOR FOR OPA.
DR. JORGENSON HAS BEEN PROMOTED
TO THE DIRECTOR FOR SCIENCE
POLICY AND SERVED AS ACTING
DIRECTOR OF OFFICE OF SCIENCE
POLICY FOR SEVERAL YEARS AND
HELPED LEAD THE DEVELOPMENT OF
NUMEROUS HIGH IMPACT SCIENCE AND
POLICY INITIATIVES AT NIH
INCLUDING THE BRAIN INITIATIVE
AND THE LAUNCH OF NCATS.
I'M GRATEFUL THAT SHE CONTINUES
IN THIS CRITICAL ROLE AND WE CAN
CONTINUE TO COUNT ON HER ADVICE
AND LEADERSHIP ON POLICY
QUESTIONS CRITICAL TO NIH'S
SUCCESS.
AGAIN, ANOTHER ROLE WHERE WE
WORK TOGETHER EVERY SINGLE DAY.
AND JOHN BURKLOW HAS BEEN
SELECTED AS CHIEF OF STAFF OF
THE OFFICE OF THE DIRECTOR AND
PROVIDES STRATEGIC COUNSEL AND
CREATES AND MAINTAINS
CROSS-DEPARTMENTAL RELATIONSHIPS
WITHIN HHS.
OFFICE LED THE OFFICE OF PUBLIC
LIAISON AND HAS SET THE STAGE
FOR HIM BEING SO EFFECTIVE IN
THE CRITICAL RELATIONSHIPS AND
HELPED PROGRESSIVE LEADERSHIP
POSITIONS IN AT NIH AND JOINED
NCI IN 1986 WE HAVE SOMEBODY IN
THE CHIEF OF STAFF POSITION WITH
DEEP KNOWLEDGE OF NIH OVER ALL.
A FEW WORDS ABOUT THE PROGRAM
THE SIMPLIFIED REVIEW CRITERIA.
THE NIH CENTER FOR STANDARD OF
CARE REVIEW PREPARED A PROPOSAL
FOR SIMPLIFIED REVIEW CRITERIA
WITH SIGNIFICANT INPUT FROM
MAJOR EXTRAMURAL COMMUNITIES AT
THE NIH INCLUDING OUR INSTITUTE
AND CENTER LEADERS.
AND RFA CLOSED IN MARCH, 2023
RECEIVING MORE THAN 800
RESPONSES FROM INDIVIDUALS AND
SCIENTIFIC SOCIETIES.
WE'RE NOT SURPRISED IT GARNERED
GREAT INTEREST.
THE VAST MAJORITY OF THE
RESPONSES SUPPORTED THE PROPOSED
CHANGES.
THE COMMUNITY REQUESTED
COMMUNICATION BEFORE A NEW
REVIEW FRAMEWORK IS IMPLEMENTED
INCLUDING GUIDANCE AND TRAINING
RESOURCES, VERY REASONABLE
REQUEST.
THE SIMPLIFIED FRAMEWORK IS TO
HELP KEY REVIEWERS ON THE KEY
QUESTIONS NEEDED TO ADDRESS
SCIENTIFIC AND TECHNICAL MERIT.
SPECIFICALLY TO ADDRESS THE
QUESTION, CAN AND SHOULD THE
PROPOSED RESEARCH BE CONDUCTED.
TO REDUCE UNDUE INFLUENCE OF
SCIENTIFIC REPUTATION IN THE
REVIEW AND THE CONTEXT OF
PROPOSED RESEARCH AND REVIEWERS
WILL NOT NEED TO GO TO POLICY
COMPLIANCE AND BETTER FOCUS ON
TECHNICAL MERIT THAN IN THE
PAST.
ADMINISTRATIVE RESPONSIBILITIES
RELATED TO POLICY COMPLIANCE
WILL SHIFT TO NIH STAFF.
INTEREST WAS A STAFF AND PUBLIC
WEBINAR AND CALLED FOR BY THE
COMMUNITY IN THE RFI RESPONSES.
WE ARE DEVELOPING TRAINING
RESOURCES AND PLAN MANY
COMMUNICATIONS LEADING UP TO THE
IMPLEMENTATION DATE.
ALL INFORMATION, THE BACKGRONUN
CAN BE FOUND ON THE WEB PAGE.
SUPPORTING INDIVIDUALS IN THE
BIOMEDICAL RESOURCE.
THE GROUP ON DIVERSITY ON
INDIVIDUALS WITH DISABILITIES
ISSUED A REPORT THAT PROVIDED
RECOMMENDS CONCERNING HOW NIH
CAN SUPPORT THE INCLUSION OF
PEOPLE WITH DISABILITIES IN THE
SCIENTIFIC RESOURCE AND RESEARCH
ENTERPRISE OVER ALL.
WE APPRECIATE THE SUBGROUP'S
EFFORTS IN EXAMINING THE ISSUE
IN DEPTH AND I'D LIKE TO DISCUSS
THE PROGRESS NIH HAS MADE ON
SOME OF THEIR SUGGESTIONS.
THE FIRST IS ABOUT UPDATING OUR
STATEMENT.
ONE RECOMMENDATION FROM THE
GROUP WAS TO KEEP THE CURRENT
NIH MISSION STATEMENT TO REMOVE
RE DUCING DISABILITY BECAUSE
THIS LANGUAGE COULD BE
INTERPRETED AS PERPETUATING
ABLIST BELIEF THAT PEOPLE WITH
EXACTS ARE FLAWED AND NEED TO BE
FIXED AND WE'RE REFLECTING
BETTER THE SPIRIT OF THE
AGENCY'S WORK TO OPTIMIZE HEALTH
FOR ALL PEOPLE.
THE PROPOSED STATEMENT IS AS
FOLLOWS, TO SEEK FUNDAMENTAL
KNOWLEDGE ABOUT THE NATURE AND
BEHAVIOR OF LIVING SYSTEMS AND
APPLY THAT KNOWLEDGE TO OPTIMIZE
HEALTH AND PREVENT ILLNESS FOR
ALL PEOPLE.
WE ISSUED AN RFI SEEKING THE
INPUT ON THE PROPOSED REVISED
STATEMENT.
THE NIH MISSION SHOULD BE
INCLUSIVE OF THOSE WHO CONDUCT
RESEARCH, THOSE WHO PARTICIPATE
IN RESEARCH AND THOSE WE SERVE
THE AMERICAN PUBLIC.
THE RFI CLOSED ON NOVEMBER 24.
WE ARE CURRENTLY REVIEWING THE
RESPONSES.
WE DO NOT HAVE A FINAL
DETERMINATION ON WHAT THE NEW
MISSION STATEMENT OF NIH MIGHT
BE DESPITE WHAT YOU HAVE SEEN
RECENTLY IN THE PRESS THERE'S
BEEN A BIT OF MISCOMMUNICATION
WE'RE STILL GETS COMMENTS ON
THIS PARTICULAR ISSUE.
DESIGNATED PEOPLE WITH
DISABILITIES AS A POPULATION
WITH HEALTH DISPARITIES.
THE SUB GROUP ALSO RECOMMENDS
PEOPLE WITH DISABILITIES BE
NORMALLY DESIGNATED AS A HEALTH
DISPARITIES POPULATION.
AFTER CAREFUL CONSIDERATION OF
THE NATIONAL ADVISORY COUNCIL ON
MINORITY HEALTH AND HEALTH
DISPARITIES FINAL REPORT, INPUT
FROM THE DISABILITIES COMMUNITY
AND REVIEW OF THE SCIENCE AND
EVIDENCE, NIH DESIGNATED PEOPLE
WITH DISABILITIES AS POPULATION
WITH HEALTH DISPARITIES ON
DECEMBER 6, 2023.
THE NATIONAL INSTITUTE ON
MINORITY HEALTH AND HEALTH
DISPARITIES ALSO RELEASED A
NOTICE OF FUNDING OPPORTUNITY
FOR RESEARCH FOCUSSED ON NOVEL
AND INNOVATIVE APPROACHES AND
INTERVENTIONS TO ADDRESS THE
INTERSECTIONS OF DISABILITY,
RACE, ETHNICITY AND SOCIO
ECONOMIC STATUS ON HEALTH CARE
ACCESS AND HEALTH OUTCOMES.
THE DISABILITY SUB GROUP THE
STEERING COMMITTEE, DEIA WORKING
GROUP IS ALSO CRITICAL TO INPUT
ON THIS ISSUE.
WE'RE IN THE PROCESS OF
REVIEWING ADDITIONAL
RECOMMENDATIONS FROM THE ACD SUB
GROUP NOT OF WHAT WAS
RECOMMENDED IS CONTAINED IN THE
MARCH DEIA STRATEGIC PLAN AND
ESTABLISHED A SUB GROUP OF THE
STEERING COMMITTEE, DEIA WORKING
GROUP TO ENSURE GOING FORWARD WE
ADDRESS ALL THE RECOMMENDATIONS
WITHIN THE REPORT.
THE SUBGROUP FOCUSES ON CULTURE,
ABLISM AND RESEARCH POLICIES AND
SYSTEMS SEEKING TO OPTIMIZE
DEVELOPMENT OF INDIVIDUALS WITH
DISABILITIES IN ALL ACTIVES.
NEXT, MORE INFORMATION ON
SUPPORTING EARLY CAREER
SCIENTISTS IS ALWAYS A CRITICAL
CONCERN OF OURS.
I KNOW TARA SCHWETZ GAVE AN
UPDATE ON RE-ENVISIONING
POST-DOCTORAL TRAINING AND
RECOGNIZING POSTDOCS ARE
GRAPPLING WITH A NUMBER OF
CHALLENGING AND I'M WORKING ON
ACCELERATING STRATEGIES AND
PROGRAMS TO GIVE MORE SUPPORT TO
EARLY CAREER RESEARCHERS OVER
ALL.
WE ARE FACING A CONTRACTED AND
CONTRACTING BUDGET.
WE KNOW NEW INVESTIGATORS TEND
TO BE DISPROPORTIONATELY
AFFECTED WHEN WE'RE SEEING A
CONTRACTION OF OUR FUNDING.
AND WE RISK LOSING A GENERATION
OF RESEARCHERS.
THIS IS SOMETHING WE TOOK AWAY
FROM THE LAST TIME THAT THE NIH
BUDGET WAS CONTRACTING.
WE'LL HAVE SOME DIFFICULT
DECISION TO MAKE AND AGAIN
MAKING THESE WITH DECISIONS WITH
THE GOALS OF SUPPORTING OUR
EARLY CAREER SCIENTISTS AND
TRAINEES.
THAT'S A SEGUE TO THE OVER ALL
BUDGET CLIMATE AND HOPEFULLY
CONGRESS WILL BE ABLE TO AVOID
DRASTIC CUTS TO NIH AND SIBLING
AGENCIES AND WE ALL RECOGNIZE A
FLAT BUDGET WILL STILL HAVE
SIGNIFICANT IMPACT.
WE SEEK OUT THE BEST IDEAS AND
THE BEST NEW SCIENCE AND THIS IS
WHERE WE FOCUS OUR FUNDING EVEN
WITH THE FUNDING WE CURRENTLY
RECEIVE, WE'RE LEAVING GREAT
IDEAS AND THE POTENTIAL FOR NEW
DISCOVERIES ON THE TABLE.
-- LEADING.
THE INTRAMURAL RESEARCH PROGRAM
IS SENSITIVE TO BUDGET CUTS AS
MOST THE FIXED EXPENSE THAT WE
SEE IS PERSONNEL COSTS AND
INVESTIGATORS IN THE INTRAMURAL
PROGRAM HAVE A VERY RESTRICTED
ABILITY TO SEEK ADDITIONAL
FUNDING TO COMPENSATE FOR THIS.
WE NEED DO EVERYTHING WE CAN TO
FUND THE VERY BEST SCIENCE AND
DEVELOP THE NEXT GENERATION OF
RESEARCH
RESEARCHERS IS OUR GOAL AND
REMAINS OUR GOAL AND I WILL
EMPHASIZE IT BECOMES MORE
DIFFICULT IN THE TIME OF
CONTRACTING RESOURCES.
PARTNERSHIP IS CRITICAL.
I'M STILL SHAPING MY PLAN IN MY
FIRST 100 DAYS AS DIRECTOR AND
DOING THIS I'M MEETING WITH
LEADERS ACROSS THE AGENCY AND I
WANT TO SHARE SOME OF THE
PRINCIPLES GUIDING THIS VISION
OVER ALL.
FIRST, WE NEED TO KEEP IN MIND
THAT OUR WORK AT NIH IS NOT
FINISHED WHEN WE DELIVER
SCIENTIFIC DISCOVERIES.
OUR WORK IS FINISHED WITH ALL
PEOPLE ARE LIVING LONG AND
HEALTHY LIVES.
WE HAVE AN UNPRECEDENTED
OPPORTUNITY TO EMBRACE AND
INCREASE ACCESS TO INNOVATION.
I WANT TO FOCUS ON WHAT NIH CAN
DO AS A BIOMEDICAL RESEARCH
INSTITUTION TO ENSURE OUR
ADVANCES REACH ALL PEOPLE WHO
NEED THEM.
AND I ALSO WANT TO EMPHASIZE
THAT TRUST IS PARAMOUNT HERE.
WHEN PEOPLE WHO STAND TO BENEFIT
FROM RESEARCH ARE OUR RESEARCH
PARTNERS BUT WE DESIGN STUDIES
THAT ENGAGE THE PEOPLE WE SERVE
AND RESPECT THEIR NEEDS AND WHEN
THEY SEE THAT THE RESULTS MAKE
THEIR LIVES BETTER THIS IS HOW
WE EARN TRUST.
ANOTHER CONCEPT THAT IS
CRITICAL, NIH RESEARCH
ENCOMPASSES THE LABORATORY,
CLINIC AND COMMUNITY.
AND PATIENTS, THE PEOPLE WE
SERVE, ARE OUR PARTNERS IN
DISCOVERY.
I WANT TO BE CLEAR FUNDAMENTAL
SCIENCE REMAINS CRITICAL AND IS
THE FOUNDATION OF ALL THAT WE
DO.
WE'RE LEARNING SO MUCH ABOUT
HUMAN BIOLOGY IN OUR BASIC HUMAN
LABORATORIES BUT AS THE RUSH OF
THIS INFORMATION COMES IN, QUE
MUST BE MORE EFFECTIVE IN
CONNECTING WHAT WE LEARN AND
UNDERSTANDING THE THE INTERPLAY
BETWEEN THE GENES WE INHERIT AND
ENVIRONMENT AND ENVIRONMENTAL
AND SOCIAL FACTORS THAT SURROUND
US AND CONNECTING THAT KNOWLEDGE
TO EVERY DAY LIFE AND CLINICAL
KNOWLEDGE SO ALL PEOPLE LIVE
LONGER AND HEALTHIER LIVES.
MY FOCUS IS TO MAKE SURE THAT
THE AMAZING BIOLOGICAL INSIGHTS
IDENTIFIED IN OUR LABORATORIES
ARE THEN PURSUED IN WAYS THAT
IMPROVE THE CIRCUMSTANCES OF
REAL PEOPLE.
WE NEED TO MAKE SURE OUR
CLINICAL RESEARCH IS ROBUST AND
COMPREHENSIVE AND THE RESULTS
BENEFIT EVERYONE.
THIS MEANS ENSURING THAT STUDIES
ARE MORE EFFICIENT, MORE
INCLUSIVE AND MORE RESPONSIVE TO
THE ACTUAL NEEDS OF PEOPLE.
OUR STUDIES IN TRIALS CAN'T JUST
ENROLL THOSE THAT HAVE FLEXIBLE
SCHEDULES AND WELL OFF WITH
GREAT INSURANCE.
INCOME, AGE, RACE, ETHNICITY,
GEOGRAPHIC LOCATION AND
DISABILITY STATUS SHOULD NOT BE
BARRIERS TO PARTICIPATING IN
CLINICAL RESEARCH THIS IS HOW WE
WILL MAKE SURE THERE WON'T BE
BARRIERS IN RECEIVING CARE.
I'VE TAKEN ON THE CHALLENGES FOR
CANCER CLINICAL TRIALS IN MY
PAST WORK AND EAGER TO GET TO
WORK MAKING THIS IS A FOCUS
ACROSS ALL NIH.
PROGRESS IS ACCELERATED WHEN NEW
DATA ANALYTICS ARE APPLIED TO
DATA THAT INCLUDES EVERYONE AND
DISCOVERIES ARE RAPIDLY AND
EQUITABLY AND ADOPTED IN
CLINICAL CARE AND NEW TECHNOLOGY
AND DATA SCIENCE BEING FAMILIAR
TO MANY OF OUR RESEARCHERS HAVE
NOW CAPTURED SIGNIFICANT PUBLIC
ATTENTION DUE TO THE ARRIVAL OF
LARGE LANGUAGE MODELS THAT CAN
BE USED BY EVERYONE.
OUR KNOWLEDGE AND TECHNOLOGY
HAVE DEVELOPED TO THE POINT THAT
WE SHOULD BE ABLE TO DELIVER
EVIDENCE-BASED DATA DRIVEN
HEALTH CARE TO EVERY PATIENT BUT
RESEARCH IS A CRITICAL PART OF
MAKING SURE THAT THIS CAN TAKE
PLACE.
ARTIFICIAL INTELLIGENCE IS
ALREADY REVOLUTIONIZING WHAT IS
POSSIBLE FOR BIOMEDICAL RESEARCH
AND CLINICAL CARE AND TO REALIZE
IT'S POTENTIAL FOR IMPROVING
HEALTH WE NEED TO INVEST IN
SUSTAIN
SUSTAINABLE INFRASTRUCTURE AND
NIH WILL HAVE AMBITIOUS
INITIATIVES TO PROPEL ARTIFICIAL
INTELLIGENCE, MACHINE LEARNING
METHODS TO THE BENEFIT OF
EVERYONE.
I THINK THAT'S IT.
THANK YOU AND I'D BE HAPPY TO
TAKE YOUR QUESTIONS.
>> THANK YOU, MONICA.
I'M SURE COUNCIL MEMBERS HAVE
MANY QUESTIONS.
LET ME OPEN UP THE FLOOR TO THEM
AND ASK THEM TO RAISE YOUR HAND
LIKE YOU'VE BEEN DOING.
>> THANK YOU.
MY QUESTION IS ABOUT THE MISSION
STATEMENT THE HEARING IMPAIRMENT
AND VISUAL IMPAIRMENT ARE NOT
THERE TO DESCRIBE THEM AND
CHANGING THE MISSION STATEMENT
OR HELP PEOPLE WITH THOSE
DISABILITIES.
I WONDER IF THAT'S A CONCERN
THAT OTHERS HAVE.
>> IT'S A CONCERN OF OURS.
THAT'S THE LAST THING WE WANT IN
THE MISSION STATEMENT.
WE ARE TRYING TO BE SENSITIVE TO
WHAT YOU JUST SAID.
MANY PEOPLE, NOT ALL BUT MANY
PEOPLE WITH DISABILITIES DON'T
VIEW THEIR DISABILITY AS
SOMETHING THAT NEEDS TO BE
FIXED.
THEY VIEW IT AS A CONDITION OF
THEIR LIFE BUT FOR WHICH OUR
RESEARCH, OUR CARE, OUR
ATTENTION NEEDS TO BE PAID TO
MAKE SURE THAT THEY CAN LIVE
THEIR BEST LIFE.
SO I THINK IT'S WONDERFUL THAT
WE'RE HAVING THIS CONVERSATION,
WHY?
BECAUSE THIS CONVERSATION IS
IMPORTANT TO THE PEOPLE THAT WE
SERVE.
I HERE YOU AND WORKING HARD TO
ENSURE IN THE CONVERSATION WE'RE
NOT GIVING SHORT DRIFT TO THE
THINGS WE NEED TO DO TO MAKE
SURE THAT THE DISABILITIES
COMMUNITY WE ARE MOVING FORWARD
WITH THE RESEARCH THAT CAN MAKE
SURE THEY LIVE THEIR BEST LIFE
WHICH MEANS SOMETIMES USING THE
K WORD.
WE MOVING A DISABILITY ENTIRELY
THAT CAN BE A VERY GOOD THING.
THERE'S SO MUCH NUANCE IN THIS
AND WE REALLY EMBRACE THE WHOLE
DISCUSSION ON BEHALF OF THE
PEOPLE WE SERVE.
>> I DON'T THINK NIH HAS FORCED
THIS ON ANYBODY SO IT'S IF THEY
WANT IT OR NOT.
>> THANK YOU FOR SAYING THAT.
THAT HITS TO OUR CORE.
WE'RE HERE TO SERVE AND NEED TO
LISTEN AND ABIDE BY THE WISHES
OF THE PEOPLE THAT WE ARE HERE
TO SERVE.
>> THAT WAS GREAT.
I THINK YOU'RE COMING IN IN AN
EXCITING TIME AND ALSO A
CHALLENGING TIME IN TERMS OF
INFECTIOUS DISEASE.
SPEAKING ON BEHALF OF NIAD AND
SPEND TIME IN OUR MEETING BEING
CONCERNED ABOUT SPECIFIC CUTS TO
NIAD AND WAS WONDERING IF THAT'S
STARTING TO FALL AWAY BECAUSE OF
SO MANY IMPORTANT INITIATIVES
THAT INFECTIOUS DISEASE
INSTITUTES ARE GOING TO DO AND
CAN'T GET OUT OF OUR HEADS THE
POSSIBILITY OF A SPECIFIC
DESIGNATED FUNDING CUT TO THAT
INSTITUTION AND WONDERING IF YOU
KNOW MORE ABOUT THAT.
>> I KNOW WHAT YOU DO I KNOW
WHAT YOU DO AND WE'RE ENCOURAGED
THAT WE SEE OUR LEGISLATORS
WORKING REALLY HARD TO SUPPORT
US.
AND I ALSO APPRECIATE THAT
DEPENDING ON WHAT HAPPENS WITH
OUR FUNDING WE'RE GOING TO HAVE
TO MAKE DECISIONS NO MATTER WHAT
AND I KNOW EVERYBODY IS FULLY
COMMITTED TO MAKING SURE EVERY
ONE OF THOSE DECISIONS IS MADE
IN MIND OF WHAT WE NEED TO DO TO
DELIVER THE VERY BEST FOR THE
PEOPLE WE SERVE.
THERE'S NO OTHER WAY TO DO IT
AND WE WORK TO HOPEFULLY TO HAVE
A RESOLUTION TO WHAT THE BUDGET
WILL LOOK LIKE VERY SOON SO THEN
WE CAN START PLANNING
APPROPRIATELY.
>> THANK YOU.
>> THANK YOU, DR. BERTAGNOLLI
COMING TODAY AND GREAT TO HEAR
FROM YOU AND I WAS ALSO HA
HEARTENED TO HERE YOU'RE A
SURGEON AND I SAW YOUR SLIDE I
WAS TRAINED AS AN EQUINE SURGEON
AND I'M ASSOCIATE DIRECTOR OF A
CANCER CENTER AND OUR CAREERS
ADVANCE WITHOUT OUR PLANNING IN
THE FIRST PLACE SO I APPRECIATE
YOUR CAREER AND YOUR LIFE STORY.
I ALSO APPRECIATE EVERYTHING YOU
SAID AND IN PARTICULAR ABOUT THE
FOUNDATION PRINCIPLES THAT NIH
INVESTS IN AND THE BASIC SCIENCE
AND DPCPSI AND I ALWAYS THINK OF
DPCPSI IN TERMS OF FUNDING AND
IN VIVO MODELS AND I REALIZE THE
IMPORTANCE OF ANIMAL MODELS FOR
UNDERSTANDING HUMAN HEALTH AND
FOR MY VETERINARY HEALTH
BACKGROUND AND I WONDER IF YOU
CAN TAKE A COUPLE MINUTES AND
TALK ABOUT IF YOU CAME BACK IN
FIVE YEARS TO US AND SAID THIS
IS WHAT I'VE ACCOMPLISHED
BECAUSE THIS IS WHAT I'VE BEEN
WORKING TOWARDS IN THE LAST FIVE
YEARS WE HEARD YOUR LONG-TERM
VISION GOALS AND WHAT YOU'D LIKE
TO ACCOMPLISH AND SEE IN TERMS
OF THE IMPACT WITH NIH ON
SOCIETY BUT WHAT COULD YOU █TEL
US IN FIVE YEARS THAT YOU WOULD
SAY THESE ARE MY SUCCESSES I
WANT TO GET BACK TO YOU AND TALK
ABOUT?
>> WOW.
WHAT A GREAT QUESTION.
I THINK WE HAVE AMAZING
OPPORTUNITIES RIGHT NOW IF WE
CAN CAPITALIZE ON THESE NEW
OPPORTUNITIES WE'LL BE ABLE TO
DELIVER GREAT THINGS.
THE FIRST ONE IS THE EXPLOSION
IN DATA TECHNOLOGY AND THE
CAPABILITY OF BEING ABLE TO USE
THAT TO TRULY BUILD A LEARNING
HEALTH SYSTEM.
I'M CAUTIOUS EVEN SAYING THOSE
WORDS.
WE'VE BEEN WORKING TO BUILD A
LEARNING HEALTH SYSTEM I KNOW
THAT PHRASE HAS BEEN PASSED
AROUND FOR AT LEAST TWO DECADES.
WE NEED TWO THINGS TO BUILD A
LEARNING HEALTH SYSTEM.
WE NEED TECHNOLOGY AND THE
WILLINGNESS OF ALL THOSE WHO ARE
INVOLVED RESEARCH AND CARE
DELIVERY AND WHAT I FOUND IN
COMING IN AS NIH DIRECTOR
THERE'S A TREMENDOUS WILLINGNESS
ON THE PART OF MY COLLEAGUES AT
HHS AGENCY TO TOWARDS THIS GOAL
AND THE TECHNOLOGY IS THERE.
WE HAVE THE TECHNOLOGY.
NOW WE'RE DOWN TO THE
WILLINGNESS AND LET'S WORK
TOGETHER AND WE'RE SEEING THAT
AT AN UNPRECEDENTED LEVEL.
WHAT I WOULD HOPE TO SEE IN THE
NOT TOO DISTANT FUTURE WE'RE
PRODUCING THE VIRTUOUS FEEDBACK
SYSTEM AND TAKE RESULTS THAT
COME FROM THE LABORATORY AND
CHANNEL THEM EFFICIENTLY AND
EFFECTIVELY INTO RESULTS FOR
PEOPLE IN A MUCH FASTER AND MORE
NIMBLE WAY.
IT'S GOING TO TAKE A DIFFERENT
FOCUS ON WHAT WE DO AND IT'S
ESPECIALLY A DIFFERENT WAY OF
ENGAGING WITH VERY DIVERSE
POPULATIONS.
AND AT A SECOND TO THIS LOFTY
GOAL WE WANT A LEARNING HEALTH
SYSTEM FOR EVERYBODY AND SO IF
YOU LIVE IN WYOMING 100 MILES
FROM A HOSPITAL THERE OUGHT TO
BE A WAY TO KNOW HOW YOU CAN
CONTRIBUTE AND BE TIED INTO THE
BROADER VISION.
I DON'T WANT MUCH, DO I?
>> JEAN, I SEE YOUR HAND UP.
>> THANK YOU FOR THE GREAT
PRESENTATION.
I'M READY TO GO TO WYOMING AFTER
THE SLIDE.
I WANTED TO ASK YOU, THANK YOU
FOR RECOGNIZING THE
INTERSECTIONS OF MULTIPAL
IDENTITIES.
I HAVEN'T SEEN IT THAT WAY
BEFORE SO THANK YOU FOR THAT ON
THE AGENDA.
I APPRECIATE IT.
AND IN THAT REGARD, HOW ARE YOU
VIEWING WHOLE PERSON HEALTH.
DO YOU HAVE A SENSE OF WHAT YOU
WOULD LIKE TO SEE IN THAT
REGARD.
THE FACT THAT WE ARE COMPONENTS
COMBINED.
HOW ARE YOU THINKING ABOUT IT.
AND THE GOAL IS HEALTHIER LIVES
AND THAT HAS TO HAVE BOTH A
DEPTH OF DETAILS INTO WHAT A
PERSON'S TOTALITY IS.
IT'S WHAT WE INHERIT IN OUR
GENES AND IT'S ALSO OUR
ENVIRONMENT IN EVERY SINGLE
ASPECT FROM THE PLACES WE LIVE
TO THE INTERACTIONS WE HAVE TO
THE TOTALITY OF THAT.
THE OTHER THING THAT I THINK IS
CRITICALLY IMPORTANT THAT
SOMETIMES WE FORGET BECAUSE IT'S
SO DIFFICULT TO ACTUALLY
INTRODUCE INTO RESEARCH IS
LONGITUDALITY AND WE RECOGNIZE
EARLY CHILDHOOD IS CRITICAL FOR
SETTING THE STAGE FOR THE REST
OF YOUR LIFE AND WE ALSO
UNDERSTAND ATTENTION TO HEALTHY
AGING THROUGHOUT THE ENTIRE LIFE
SPAN IS ALSO SOMETHING WE HAVE
TO PAY ATTENTION TO.
I THINK I'VE GIVEN A LITTLE
SKIPPING THROUGH SOME OF THE
MANY ISSUES AND I THINK THE ONLY
WAY I CAN SAY THAT WE CAN
ACHIEVE THIS IS BY EVERY ONE OF
US FOCUSSING ON THE ISSUE OF
LONG AND HEALTHY LIVES.
>> KEVIN.
>> HELLO AND CONGRATULATIONS.
WE HAVE DONE WELL IN SELECTING
YOU.
WE'VE BEEN TALKING ABOUT THIS
FOREVER.
WHAT WOULD YOU LIKE TO SEE
COUNCIL OF COUNCILS DO FOR?
YOU?
>> THANK YOU FOR THAT.
YOU KNOW, YOU REPRESENT THE
DEPTH AND BREADTH OF EVERYTHING
WE DO AT NIH.
HERE'S WHAT I WOULD LOVE THIS
COUNCIL TO DO.
WHAT ARE THE MOST IMPORTANT
THINGS WE CAN DO IS ELIMINATE
SILOS AND COME TOGETHER
EFFECTIVELY.
AND WE WILL NOT SUCCEED UNLESS
WE FIND WAYS TO INTERSECT
PROPERLY TO WORK TOGETHER.
THERE'S SOME UNITING THEMES.
SOME HAVE TO DO WITH DELIVERING
RESEARCH STRATEGIES TO ADDRESS
MULTIPLE CONDITIONS.
DEVELOPING DATA, SHARING DATA
ACCESS, DATA ANALYTIC METHODS
THAT CROSS ALL THE DIFFERENT
CONDITIONS THAT WE ARE HERE TO
ADDRESS.
THIS IS THE GROUP THAT CAN HELP
US WORK TOGETHER AND ELIMINATE
SILOS AND IDENTIFYING COMMON
NEEDS.
IT'S ALWAYS EASIEST TO WORK
TOGETHER WHEN YOU KNOW EVERYONE
NEEDS THE SAME THING.
THIS IS THE TEAM THAT CAN HELP
US DO THAT.
I KNOW THIS IS PART OF YOUR CORE
MISSION BUT THIS IS EXACTLY WHY
WE NEED YOU AND I WILL JUST SAY
WE MEAN IT.
WHAT YOU TELL US ABOUT WHAT ARE
THE COMMON NEEDS WE NEED TO
FOCUS ON PARTICULARLY FROM THE
OFFICE OF THE DIRECTOR, THAT
WILL HELP US LISTEN AND ACT.
>> THANK YOU.
I ALSO WANT TO PUT A PITCH AND
I'M DELIGHTED TARA HAS TAKEN ON
THE LEAD OF DPCPSI AND WHERE
MANY ACTIVITIES ARE GROUNDED FOR
US, THE SCIENTIFIC RESEARCH IS
GROUNDS AND WITH HER EXPERIENCE
WITH THE ALMOST LAST TWO YEARS
OF SERVING AS PRINCIPLE DEPUTY
DIRECTOR SHE IS IN A GREAT
POSITION TO BE ABLE TO HELP
COORDINATE ALL THESE DIFFERENT
ACTIVITIES AND I'M THRILLED
SHE'LL BE ABLE TO WORK WITH YOU
ON ALL THIS.
>> I'LL SPEAK FOR MYSELF, I'M
EXCITED TO JUMP IN AND START
EXPLORING SOME OF THESE
QUESTIONS AND MANY OTHERS WITH
THE COUNCIL OF COUNCILS AND
CROSS-CUTTING TOPICS FOR NIH.
I'M NOT SEEING ADDITIONAL HANDS
SO I'M ALWAYS EXCITED TO GIVE
YOU TIME BACK.
>> LET ME GIVE THE LAST COMMENT
HERE.
I'M GRATEFUL AND HAVE BEEN A
COUNCIL MEMBER AND KNOW HOW MUCH
WORK THIS IS AND IF YOU'RE
DEDICATED TO THIS I KNOW YOU'RE
TAKING TIME FROM YOUR BUSY LIVES
AND WE DON'T ASK ANYONE TO SERVE
IN THIS IMPORTANT CAPACITY
UNLESS YOU'RE ALREADY INCREDIBLY
CONNECT AND VERY BUSY.
I WANT YOU TO KNOW HOW MUCH I
APPRECIATE YOU DOUGH -- DEVOTING
YOUR TIME TO THIS AND
APPRECIATION IS ONE THING BUT
THE WAY WE WILL SHOW OUR
APPRECIATION IS BY TRULY
LISTENING AND ACTING ON WHAT YOU
TELL US.
JUST WANT TO EMPHASIZE HOW MUCH
WE WILL DO THAT AND HOW
IMPORTANT THAT IS.
SO THANK YOU ALL.
>> GREAT, THANK YOU SO MUCH.
REALLY, WE APPRECIATE THE TIME
THIS MORNING TO HAVE A
DISCUSSION WITH YOU.
>> HAVE A GREAT MEETING.
THANK YOU, BYE-BYE.
>> OKAY.
WELL, WE'RE ONLY A COUPLE
MINUTES AHEAD OF SCHEDULE SO I'M
LOOKING TO SEE IF WE HAVE OUR
NEXT PRESENTER ON.
I'M GETTING THE NOD, YES SO
WE'LL JUST CONTINUE TO MOVE
FORWARD THEN WITH OUR FIRST
CONCEPT CLEARANCE WE HAVE FOR
TODAY.
AND WE'RE GOING TO HEAR ABOUT
THE SECOND VERSION OR ITERATION
OF THE COMMON FUND PROGRAM THAT
IS GABRIELLA MILLER KID'S FIRST
HELPING RESEARCHERS UNCOVER
BIOLOGY INTO CHILDHOOD CANCER
AND STRUCTURAL BIRTH DEFECTS
INCLUDING THE DISCOVERY OF
SHARED GENETIC PATHWAYS BETWEEN
THESE DISORDERS.
AND WE'RE JOINED BY AND WILL
HEAR FROM DR. JAMES COULOMBE
CHIEF OF DEVELOPMENT BIOLOGY AND
CON GEN ANOMALIES BRANCH AND THE
WORKING GROUP COORDINATOR FOR
THE GABRIELLA MILLER KIDS FIRST
RESEARCH PROGRAM AND WILL TALK
MORE ABOUT THE 2.0 VERSION AND
THEN FOLLOWING HIS COMMENTS
WE'LL HEAR FROM TWO OF OUR
COUNCIL MEMBERS DOCTORS ARDLY
AND JOHNSON.
LET ME TURN IT OVER TO JAMES.
>> GOOD MORNING, IT'S BEEN MY
HONOR TO WORK FOR THE GABRIELLA
MILLER KIDS FIRST PEED TAKE
PROGRAM AND I WANT TO SHARE
FUTURE PROSPECTS FOR KIDS FIRST.
BEFORE WE GET STARTED, I'D LIKE
YOU TO WATCH A CLIP FROM A
RECENT EVENT TO HIGHLIGHT THE
COLLABORATIVE AND VIBRANT
PEDIATRIC RESEARCH COMMUNITY
THEY'RE HELPING TO BUILD.
START THE VIDEO.
>> THANK YOU FOR BEING HERE
TODAY AND DATA IS DRIVING
DISCOVERIES AND THE NIH IS PROUD
TO COLLABORATE WITH RESEARCHERS
TO MAKE DREAMS COME TRUE.
>> I'M EXCITED TO BE HERE.
KIDS FIRST IS AN AMAZING
OPPORTUNITY AND IDENTIFY THEMES
THAT MAY CAUSE DISEASE AND
THERE'S AN EXCITING WAY TO
ENGAGE RESEARCH AND LEARN MORE
ABOUT WCONGENITAL ANOMALIES.
>> I'M GLAD TO SEE WE HAVE A LOT
OF INTERSECTION BETWEEN THE
PROGRAMS.
WE'RE JOINING THE EFFORT FOR
INFORMATION FROM THE DATA.
>> WE'RE EXCITED TO BE HERE.
WE ALL SHARE THE SAME GOALS AND
THANK YOU FOR INVITING ME.
>> WE'VE ASKED QUESTIONS AND
CONTRIBUTE TO THE WORK.
>> AND WE'RE HAVING FUN AND
HAVING GOOD SCIENCE AND THANK
YOU VERY MUCH FOR HOSTING US
TODAY.
>> WHAT DO YOU THINK ABOUT THE
KIDS FIRST PROGRAM?
>> I THINK IT'S REALLY IMPORTANT
BECAUSE PEDIATRICS ALWAYS COMES
LAST AND IT'S REALLY IMPORTANT
TO HAVE A PROGRAM WHERE KIDS
COME FIRST AND WE CAN ASK
QUESTIONS.
>> I'M SO EXCITED TO BE HERE
TONIGHT AND DISCUSS THE EXCITING
FINDINGS AND GREAT RESEARCH WE
ALL HAVE BEEN DOING AND HOW
COHORTS HAPPENS AND THE NEED TO
DO MORE SEQUENCING MORE
PHENOTYPING AND WHAT WE CAN DO
AS A COMMUNITY MOVING AHEAD FROM
HERE.
>> IF I CAN HAVE THE NEXT SLIDE.
WE'RE SEEKING APPROVAL FOR THE
EXTENSION OF THE KIDS FIRST
PROGRAM PENDING A CONGRESSIONAL
AUTHORIZATION.
WE PURSUE RESOURCE AND SUPPORT
FOR EFFORTS TO ENHANCE THE VALUE
AND USE OF THE DATA.
THESE CONCEPTS ARE INTENDED FOR
THE HIGH-LEVEL FRAMEWORK AND THE
KIDS FIRST WORKING GROUP WILL
TRANSLATE THESE TO PRACTICAL
INITIATIVES DEPENDING ON THE
DURATION AND FUNDING OF THE
PROGRAM.
SO KIDS FIRST WAS LAUNCHED AS A
CONSEQUENCE OF THE 2014
GABRIELLA MILLER KIDS FIRST
RESEARCH ACT AIMED AT BOOSTING
PEDIATRIC RESEARCH.
THE ACT AUTHORIZED $12.6 MILLION
ANNUALLY FOR 10 YEARS TO
SUPPLEMENT, NOT SUPPLANT
EXISTING NIH EFFORTS.
NAMED AFTER GABRIELLA MILLER A
YOUNG ADVOCATE FROM NORTHERN
VIRGINIA BOTH THE ACT AND
PROGRAM AND VISION OF FUTURE
WITH CHILDHOOD CANCER AND
STRUCTURAL BIRTH DEFECTS.
THE VISION OF KIDS FIRST RESTS
ON OUR BELIEF THAT COLLABORATIVE
RESEARCH AND DATA SHARING WILL
ACCELERATE PEDIATRIC RESEARCH
AND ULTIMATELY LEAD TO IMPROVED
DIAGNOSTICS AND TREATMENTS FOR
PATIENTS AND THEIR FAMILIES.
THE FIRST FUNDS WERE PROVIDED IN
2015.
KIDS FIRST HAS BEEN A COMMON
FUND PROGRAM ADMINISTERED BY
NICHD WITH THE HEALTH OF NCI,
NHLBI AND NGRI AND THE COMMON
FUND AND ADDITIONAL COLLEAGUES
ACROSS NIH INSTITUTES AND CDC.
THE KIDS FIRST WORKING GROUP WAS
TASKED WITH BUILDING A DATA
RESOURCE TO ADVANCE
COLLABORATIVE RESEARCH AND DATA
SHARING SPECIFICALLY FOCUSSED ON
CHILDHOOD CANCER AND STRUCTURAL
BIRTH DEFECTS.
BIRTH DEFECTS AND CANCER ARE
LEADING CAUSES OF DEATH IN
CHILDHOOD IT MAKE SENSE TO STUDY
THEM TOGETHER AND SHARE GENOMIC
VARIANTS AND SIGNALLING PATHWAYS
AND A CHILD BORN WITH A BIRTH
DEFECT ALSO FACES A HIGHER RISK
OF HAVING CANCER.
IN THE CURRENT PHASE OF KIDS
FIRST, WE HAVE BEEN PURSUING
THREE BROAD OBJECTIVES.
WE ADDED MORE WHOLE GENOME
SEQUENCE AND CLINICAL AND
PHENOTYPIC DATA THROUGH THE
RESOURCE FROM A DIVERSITY OF
CONDITIONS AND POWER THE
ADDITION OF DNA AND PROTEOMIC
ASSAYS.
WE CONTINUE DEVELOP AND
IMPROVEMENT OF THE DATA RESOURCE
CENTER MAKING SUMMARY DATA MORE
ACCESSIBLE AND DEPLOYED A
STANDARDS-BASED SERVER TO RICHER
PHENOTYPIC AND CLINICAL DATA.
WE ALSO SUPPORTED AND DRAWN ON
THE EXPERTISE OF THE RESEARCH
COMMUNITY FOR ACTIVITIES TO
IMPROVE THE UTILITY OF KIDS
FIRST DATA, FOR EXAMPLE, BY
SUPPORTING THE DEVELOPMENT OF
ANALYTICAL TOOLS FOR STRUCTURAL
VARIANTS FROM SHORT RANGE
SEQUENCE DATA.
THOUGH COLLECTIVE CHILDHOOD
CANCERS AND STRUCTURAL BIRTH
DEFECTS ARE FAR TOO COMMON,
INDIVIDUAL CONDITIONS ARE MOSTLY
RARE IN COLLECTING PATIENT
POPULATIONS FOR ADEQUATELY
POWERED GENOMIC STUDIES ARE
CHALLENGING.
KIDS FIRST WAS CONCEIVED TO
SURMOUNT THIS PROBLEM BY BUILD
DATA RESOURCE OF HIGH QUALITY
GENOMIC DATA FROM EFFECTED
CHILDREN AND PARENTS HARMONIZED
BY NOT BEING AGAINST THE SAME
GENOME AND VARIANTS CALLED FOR
THE SAME ANALYSIS WORK FLOW.
THIS MEANS DATA IN KIDS FIRST
CAN BE READILY ANALYZED,
INDIVIDUALLY OR IN COMBINATION
WITH DATA FROM DIFFERENT STUDIES
AND DIFFERENT CONDITIONS AND/OR
ACROSS CONDITIONS AND BROADLY
SHARED.
KIDS FIRST HAS MADE AVAILABLE
DATA FROM MORE THAN 27,000
INDIVIDUALS FROM 33 STUDIES
REPRESENTING CONDITIONS
AFFECTING A VARIETY OF
BIOLOGICAL SYSTEMS AND
ANATOMICAL LOCATIONS.
ADDITIONALLY, DATA IS AT VARIOUS
STAGES OF THE PRODUCTION
PIPELINE AND WILL BECOME
AVAILABLE IN THE FUTURE.
TO MAKE ALL THIS DATA USABLE WE
DEVELOPED THE DATA RESOURCE
CENTER A COLLABORATIVE EFFORT
CENTERED AT THE CHILDREN'S
HOSPITAL OF PHILADELPHIA.
THE DATA RESOURCE CENTER HAS
BUILT A PORTAL FOR CLINICAL AND
PHENOTYPIC DATA ASSOCIATED WITH
THE GENOMIC SEQUENCE DATA IS
READILY ACCESSIBLE FROM A SIMPLE
REGISTRATION AND CLICK THROUGH
AGREEMENT.
A USER CAN VISUALIZE CLINICAL
AND PHENOTYPIC DATA FILTERED
WITH PARTICIPANT FILES AND
COHORTS COMBINING INDIVIDUAL
DATA FILES ACROSS STUDIES AND
CONDITIONS.
THIS ALLOWS A USER TO DETERMINE
THE FEASIBILITY OF ANALYTICAL
PROJECTS TO THE GENOMIC DATA.
THE USER CAN THEN UTILIZE THE
PLATFORM OF TO BRING KIDS FIRST
DATA INTO AN INDIVIDUALIZED WORK
SPACE AND THEN BRING IN ANALYSIS
TOOLS EITHER FROM LIBRARY OR
FROM THEIR OWN DESIGN AND SET
THOSE TOOLS TO WORK.
THEY CAN ALSO BRING IN THEIR OWN
DATA OR DATA FROM INTEROPERABLE
RESOURCES AND OTHER AUTHORIZED
USERS TO COLLABORATE WITHIN THE
WORK FACES.
THE KIDS FIRST DATA ALSO AIMS TO
DEMOCRATIZE CLINICAL RESEARCHERS
AND BENCH SCIENTISTS,
PHYSICIANS, PATIENT FAMILIES AND
OTHERS WITHOUT EXTENSIVE BIO
INFORMATICS TRAINING AND VARIANT
EXPLORER.
THIS SUMMARIZES DATA TO SEARCH
FOR GENE VARIANTS AND LOOK AT
PREDICTED AFFECTS ON PROTEIN
STRUCTURE AND POTENTIAL CRITICAL
OR PHENOTYPIC IMPLICATIONS.
AND THE GENES AND VARIANTS
REMAIN ELUSIVE BUT CAN SERVE AS
A REPOSITORY OF CANDIDATE GENES
FOR FUNCTIONAL STUDIES TO
ULTIMATELY LEAD TO AN
UNDERSTANDING OF A GENE AND GENE
VARIANTS SIGNIFICANCE.
AT KIDS FIRST WE BELIEVE IN THE
POWER OF COLLABORATION.
WE'VE JOIN FORCED WITH THE
CHILDHOOD CANCER DATA
INITIATIVE, INCLUDE AND NIH'S
CLOUD-BASED PLATFORMS FOR
INTEROPERABILITY AND
COLLABORATIONS TO THE BROAD AND
ENLISTED PROTEOMIC TUMOR
ANALYSIS CONSORTIUM FOR
PROTEOMIC DATA GENERATION AND IN
ADDITION WE WORKED WITH THE
PRODUCTION CENTERS FOR
DEVELOPING MOUSE MODELS OF
KIDS-FIRST DERIVED GENOMIC
VARIANTS.
THE DATA INCLUDES THE GENOMES OF
OVER 27,000 INDIVIDUALS
INDIVIDUALS REPRESENTS PATIENTS
AND THEIR FAMILIES FROM 22
STRUCTURED BIRTH DEFECT AND 11
PEDIATRIC CANCER STUDIES.
THIS DATA IS GETTING USED WITH
OVER 3,000 REGISTERED USERS AND
650 APPROVED APPLICATIONS FOR
SECONDARY USE OF THE KIDS FIRST
GENOMIC DATA.
THE DATA AND INDIVIDUAL
INVESTIGATORS OR TO A CONSORTIUM
OF INVESTIGATORS AND
INCORPORATING A WIDE VARIETY OF
USERS FROM OVER 50 COUNTRIES.
THIS DATA IS PAVING THE WAY FOR
GROUND BRAKING RESEARCH
EMPOWERING GENE REGULATORY
STUDIES AS WELL AS ACCELERATING
THE IDENTIFICATION OF BIOMARKERS
AND POTENTIAL DRUG TARGETS.
AND KIDS FIRST DATA USAGE IS ON
THE RISE.
THERE'S GROWTH IN THE GB GAP
ACCESS REQUEST APPROVALS.
NIH GRANT APPLICATIONS
INCREASINGLY PROPOSE THE USE OF
KIDS FIRST DATA AND
PEER-REVIEWED PRIMARY RESEARCH
PAPERS ARE LONGER TERM RESULT
ARE INCREASING WITH 90
PUBLICATIONS CITING THE USE OF
KIDS FIRST DATA.
HARDER TO QUANTIFY BUT AN
IMPORTANT PART OF THE PROGRAM'S
VISION OF THE COLLABORATIONS
CATALYZED BY KIDS FIRST WITHIN
THE PEDIATRIC RESEARCH
COMMUNITY.
JUST ONE EXAMPLE EVIDENT FROM
THE SEQUENCING PROJECT WAS
SPEARHEADED BY EFFORTS OF
RESEARCHERS AT EMORY, BAYLOR AND
ST. JUDE THAT INCLUDED SAMPLES
FROM SIX INVESTIGATE ARE AT
DIFFERENT SITES.
OTHER INVESTIGATORS HAVE TEAMED
UP TO PROVIDE SAMPLES FOR
SEQUENCING DATA FROM AFFECTED
CHILDREN TO CONTRIBUTE TO THE
KIDS FIRST DATA RESOURCE.
WHAT'S NEXT FROM THE KIDS FIRST
PROGRAM?
IN SCENARIO ONE THE KIDS FIRST
PROGRAM END WILL WRAP UP IN
CALENDAR YEAR 2025 USING FISCAL
YEAR 2024 FUNDS.
EARLY THIS WEEK THE ADVISORY
COUNCIL APPROVED CONCEPT
CLEARANCE FOR NIH INSTITUTES TO
MAINTAIN THE KIDS FIRST DATA
RESOURCES.
IN SCENARIO 2, KIDS FIRST 2.0
LEGISLATION IS PASSED INTO LAW.
THERE BE BILLS AIMED AT
EXTENDING THE PROGRAM AND BOTH
ARE ON THE LEGISLATIVE
CALENDARS.
THE HOUSE BILL PROVIDES A
FIVE-YEAR EXTENSION OF THE KIDS
FIRST PROGRAM WITH NO SPECIFIED
FUNDING LEVELS.
THE SENATE BILL PROPOSES A
10-YEAR EXTENSION FOR KIDS FIRST
AND INCREASES FUNDING BY $2.5
MILLION EVERY TWO YEARS FROM AN
INITIAL 12. 6PER YEAR AND
PROGRAM RESPONSIBILITY IS
ASSIGNED TO DPCPSI AND BOTH
BILLS REQUIRE YEARLY
APPROPRIATIONS AND A FIVE-YEAR
CONGRESSIONAL REPORT AND
PRIORITIZE WORK THAT DOES NOT
OVERLAP WITH EXISTING NIH
EFFORTS.
THERE ARE ASPECTS OF KIDS FIRST
WE CONSIDER VITAL FOR CONTINUED
SUCCESS.
RESEARCHERS AND PARENTS SHOULD
BE ABLE TO EASILY INTERACT WITH
KIDS FIRST DATA TO DEVELOP
HYPOTHESES AND DETERMINE WHICH
CONTROL DATA ACCESS AND --
CONTROLLED ACCESS DATA SETS TO
APPLY FOR.
NIH SHOULD MAINTAIN CONTROL AND
AUTHORITY OVER HOW GENOMIC DATA
ARE MANAGED AND DISTRIBUTED.
THIRD, KIDS FIRST SHOULD
CONTINUE TO FACILITATE CLOUD
COMPUTING SO RESEARCHERS CAN
DEPLOY THEIR OWN TOOLS AND WORK
FLOWS AND ANALYZE AND CO-ANALYZE
MULTIPLE DATA SETS ACROSS
PEDIATRIC CONDITIONS.
FOURTH, KIDS FIRST SHOULD
CONTINUE TO BE PART OF AN NIH
DATA ECO SYSTEM IMPLEMENTING THE
RESEARCH AUTHENTICATION AND
SYSTEM ENABLING PRINCIPLES AND
GLOBAL STANDARDS.
AND FINALLY, KIDS FIRST SHOULD
CONTINUE TO FACILITATE BROAD
DATA SHARING KEEPING PACE WITH
THE PATIENTS AND FAMILIES WHO
HAVE CONTRIBUTED.
THE PROPOSED ACTIVITIES ARE
AIMED AT AMPLIFYING THE VALUE OF
THE CURRENT PROGRAM AND
RESOURCES KIDS FIRST HAS BUILT.
WE PLAN TO AUGMENT DATA
GENERATION BY EXPANDING DATA
TYPES AND COHORT DIVERSITY AND
INCLUDING CLINIC-BASED DATA
SOURCES.
WE PLAN TO IMPROVE DATA
ACCESSIBILITY BY OFFERING
ADVANCED TOOLS REQUIRING MINIMAL
BIO INFORMATICS TRAINING AND IN
PARALLEL EXPANDING TRAINING IN
CLOUD-BASED COMPUTATIONAL
ANALYSIS.
AND ENGAGE COMMUNITY BY
INVOLVING RESEARCH PROFESSIONALS
AND PATIENT COMMUNITIES TO
ENHANCE THE VALUE OF KIDS FIRST
DATA.
THIS COULD BE ACHIEVED, FOR
EXAMPLE, BY ENHANCING THE
AVAILABLE CLINICAL DATA THROUGH
GUIDELINES OF ELECTRONIC HEALTH
RECORDS.
AS A NEW SOURCE OF PEDIATRIC
DATA WE PROPOSE ESTABLISHING
CONNECTIONS WITH CLINICAL
CENTERS AND PATIENT REGISTRIES.
PATIENTS WITH STRUCTURAL BIRTH
DEFECTS, CHILDHOOD CANCERS OR
LIKELY GENETIC, CONGENITAL
DISEASES WOULD BE CONSENTED
UNDER APPROPRIATE STANDARDS AND
SEQUENCING CENTER WOULD PROVIDE
A RAPID TURNAROUND OF WHOLE
SEQUENCE DATA TO THE PHYSICIAN
FOR RETURN OF RESULTS TO
PATIENTS AND FAMILIES.
AND DATA FROM ELECTRONIC HEALTH
RECORDS WOULD BE REPORTED TO THE
KIDS FIRST DATA RESOURCE CENTER
ALONG WITH THE GENOME IC DATA
AND VARIOUS ANNOTATIONS TO ADD
TO THE DATA RESOURCE.
THEY WOULD ADD OUTREACH AND
DIVERSION OF PATIENT POPULATIONS
AND ADDITIONAL MODALALI MODALIT.
THERE'S SEVERAL POTENTIAL FOR
FUNCTIONS OF DATA RESOURCE.
FOR EXAMPLE, ELECTRONIC HEALTH
RECORDS ARE NOW REQUIRED TO BE
AVAILABLE THROUGH FIRE-BASED
APPLICATION PROGRAMMING
INTERFACES.
KIDS-FIRST IS IDEALLY POISED TO
LEAD ORGANIZATIONS AND
PUBLICATIONS OF A
COMMUNITY-BASED PEDIATRIC GUIDE
FOR COLLECTION OF ELECTRONIC
HEALTH RECORD DATA TO HELP
UNLOCK A RICH SOURCE OF DATA FOR
ANALYSIS.
AND FOR FURTHER IMPROVEMENT OF
THE DATA PORTAL, AN EMPHASIS
WILL BE PLACED ON DEVELOPMENT OF
FEATURES THAT ENABLE BENCH
SCIENTISTS, CLINICIANS AND
OTHERS WITHOUT DEEP BIO
INFORMATICS TRAINING TO USE KIDS
FIRST DATA.
WE ALSO HOPE TO INCREASE THE
VALUE OF KIDS-FIRST DATA AND THE
DATA PLATFORM.
THESE INITIATIVES WOULD CALL ON
THE COMMUNITY FOR A VARIETY OF
ACTIVITIES TO IMPROVE FACILITATE
TUESDAY OF KIDS FIRST.
ALL THESE ACTIVITIES WOULD HELP
TO ACCELERATE PROGRESS IN
PEDIATRIC RESEARCH.
6:
FINALLY KIDS FIRST IS BUILDING A
COMMUNITY OF COLLABORATIVE
RESEARCHERS WHO ARE EAGERLY
ENGAGED IN SOLVING PRE IIE IING
HOPE TO CONTINUE AND GABRIELLA
MILLER IMPLORED CONGRESS TO STOP
TALKING AN START DOING AND ALL
THE INDIVIDUALS INVOLVED WITH
KIDS FIRST HAVE DONE THAT AND
WITH YOUR CONCURRENCE HOPE TO
CONDITION.
ON BEHALF OF THE KIDS FIRST
WORKING GROUP I ASK FOR
CLEARANCE OF THE GABRIELLA
MILLER FIRST PEDIATRIC RESEARCH
PROGRAM AND HAPPY TO ANSWER ANY
QUESTIONS.
>> THANKS SO MUCH, JAMES.
FIRST TO DR. ARDLY TO SEE IF YOU
HAVE ANY COMMENTS TO SHARE WITH
COUNCIL.
>> YOU HAVE MY APPROVAL.
IT'S A GREAT PROGRAM AND IT'S
IMPORTANT TO BRING THE DATA
TOGETHER.
I DO THINK KIDS FIRST SHOULD BE
APPROVED FOR CLEARANCE AND I
HAVE SOME QUESTIONS.
IT'S UNCLEAR TO ME HOW THE
BUDGET IS BEING SUGGESTED TO BE
SPENT BECAUSE THERE ARE THREE
DIFFERENT COHORTS SO I DON'T
KNOW PROPORTIONATELY WHERE IS
THE WEIGHT OF THE BUDGET WILL BE
AND THINK THE MOST IMPORTANT
PURVIEW IS THE DATA GENERATION
PART.
THE MORE DATA WE HAVE THE MORE
CURATION WE GET THE BETTER BUT I
DON'T KNOW THE BREAKDOWN WILL BE
PROPORTIONATELY.
IN THE LONG-TERM WE WANT THE
DATA COLLATED AND AVAILABLE BUT
THE GENERATION NOW IS KEY.
CREATING THE CURATION CENTER AND
THERE ARE EFFORTS ONGOING.
I HOPE IT WON'T BE SOMETHING
INDEPENDENTLY BE PART OF THOSE
EFFORTS WITH CLINICAL SEQUENCING
HAPPENING AND CURATING
MEANINGFUL VARIANTS TO DEFINE
THOSE.
IN TERMS OF DATA TYPES I HAD A
QUESTION SOME OF THE ADDITIONAL
DATA TYPES I GUESS DEPEND ON THE
DISEASE AND THE SAMPLES
AVAILABLE IT'S VALUABLE TO
INCLUDE THEM BUT I WONDER IF
THERE'S EFFORTS AND I SPENT THE
MORNING WITH THE KIDS FIRST
WEBSITE AND PORTAL.
THE NUTS AND BOLTS IS IN THE
PORTAL AND I GENERALLY REJECT
THE NOTION I HAVE TO FIND OUT
WHAT'S AVAILABLE BY LOGGING ON
TO SOMETHING SO I DELIBERATELY
DIDN'T.
YOU CAN FIND OUT BASICS FROM THE
WEBSITE AND I GOT TO A SITE
DESCRIBING THE STUDIES AND
ACCESS FOR THOSE STUDIES.
IT'S A VERY CLUNKY TABLE.
I NOTICED QUITE A FEW OF THE
DISEASE COHORTS, DISEASE
SPECIFIC WHICH PROHIBITS THE USE
IN CROSS-DISEASE STUDIES.
AND I DOES NOTICE PROJECTS
PRIORITIZED WHERE THERE'S NOT
RESTRICTIONS SO THAT'S GOOD AND
A GOOD NUMBER OF AVAILABLE DATA
SETS RIGHT NOW DO HAVE THOSE
RESTRICTIONS.
AND IN ADDITION TO MAKING THE
DATA MORE ACCESSIBLE AND
EXPLORABLE TO PHYSICIANS OR
OTHERS IT WOULD BE NICE TO HAVE
A SUMMARY OF THE DATA WHICH IS
VERY EASY TO DO.
A FAIR SUMMARY OF THE DATA
DOESN'T REQUIRE JUST TO SEE
BECAUSE I THINK THAT HELPS
PEOPLE FIND OUT WHAT THEY MY
WANT TO DO TO STUDY.
IN TERMS OF NUMBER THREE IN THE
PRIORITIZATION OF THE
EXPERT-DRIVEN ACTIVITIES I THINK
TRAINING IS KEY AND THAT'S COME
UP IN EFFORTS KEVIN AND I HAVE
DONE.
I DON'T THINK PRIORITIZATION OF
TOOL DEVELOPMENT BUT USING
MULTIPLE DATA SETS OF STUDIES
AND FINDABILITY AND
ACCESSIBILITY IS KEY.
I DON'T THINK WE HAVE THAT
FORESIGHT TO ANTICIPATE THE
TOOLS PEOPLE WANT AND THEY'RE
OFTEN DEVELOPED IN A GRADUATE OR
POSTDOC RESEARCH PROGRAMS
BECAUSE IT HAPPENS TO BE A GOOD
TOOL BUT I THINK ENCOURAGING USE
OF MULTIPLE DATA SETS IS
IMPORTANT AND THERE COULD BE
BENEFIT IN SUPPORTING THOSE TYPE
OF APPLICATIONS FOR USE OF THE
DATA AND LASTLY LISTENING TO
YOUR VIDEO AND GOING BACK TO A
SEARCH OF PUB MED FOR
PUBLICATION MOST ARE ON SINGLE
ANALYSIS AND ENCOURAGING THE
ANALYSIS ACROSS COHORT STUDIES
WILL PROMOTE THE INTEGRATION AND
COLLABORATION.
I THINK THAT'S ABOUT ALL I HAVE.
>> I APOLOGIZE, YOU HAD MANY
EXCELLENT OBSERVATION S.
IT'S A REAL SHAME YOU DIDN'T
VIEW THE MINIMAL REGISTRATION
REQUIRED BECAUSE ALL IT TAKES IS
LIKE A GMAIL ADDRESS TO GET IN
THERE BUT WE WERE PRETTY MUCH
REQUIRED TO HAVE SOME LEVEL OF
TIER OF PROTECTION AND ASKING
THE PERSON LOGGING ON TO DO A
MINIMAL REGISTRATION AND QUICK
AGREEMENT TO SAY THEY WON'T
MISUSE THE DATA AND A WHOLE LOT
OF VISUALIZATION AND ACCESS IS
AVAILABLE FOR YOU TO COMB
THROUGH.
>> THAT'S VALUABLE BUT
UNDERSTANDING THE DATA AT A
LEVEL IS IMPORTANT TO DO A
GENERAL SEARCH AND FIND THESE
THINGS AND IF NOT THE ACTUAL
DATA, THERE'S NOTHING YOU'D HAVE
TO AGREE TO TO GET GOOD SUMMARY.
THEY'RE BOTH VALUABLE.
>> THEY'RE IN THE PROCESS OF
REVAMPING THE WEBSITE WHICH WAS
DEVELOPED MANY YEARS AGO AND
I'LL TALK THAT MESSAGE BACK TO
THEM FOR SURE.
THE COMMON FUND DATA SYSTEM AND
THE X01 PROJECT IS EASILY
AVAILABLE AND WE COULD HAVE
EITHER MORE NOT JUST A LINK BUT
MORE DESCRIPTIVES ON THE KIDS
FIRST DATA PORTAL AS WELL.
I WOULD SAY A NUMBER OF STUDIES
ARE DISEASE SPECIFIC.
WE ALLOWED SOME OF THOSE IN THE
EARLY STAGES OF THE PROGRAM THEY
WERE GENERALLY SAMPLES AND
COHORTS AND ASSEMBLED MANY YEARS
AGO AND WE TRIED TO ENCOURAGE
THOSE RESOURCES TO GO BACK BACK
TO SEE IF THEY COULD RE-CONSENT
IF THERE'S A DIFFICULT
PROFESSION.
THERE'S A MINORITY OF DATA OF
DISEASE SPECIFIC COHORTS BUT WE
PRIORITIZE BROAD DATA SHARING
WITHOUT ANY OTHER USE
LIMITATIONS AND SINCE I'VE BEEN
THE COORDINATOR FOR THE PROGRAM
WE HAVE NOT SEQUENCED ANY OF
THOSE.
SINCE THE PROPORTION OF SAMPLES
AND A RELATIVELY SMALL PROGRAM
FOR NIH, $12.6 MILLION A YEAR
PLUS SOME CONTRIBUTIONS FROM THE
COMMON FUND FROM RNS TO SUPPORT
PEOPLE LIKE MYSELF.
WE'VE BEEN SPENDING A QUARTER OF
OUR BUDGET ON THE DATA RESOURCE
CENTER AND THE REST ON DATA
GENERATION.
DEPENDING ON FINDING SAMPLES
THAT CAN BE SEQUENCED WITHOUT
THE USE LIMITATIONS I WOULD
CONTEMPLATE THE PROPORTION WOULD
BE SIMILAR AND WE DO NOT HAVE
THE LEGISLATION IN PLACE OR KNOW
WHAT THE BUDGET WILL BE.
WE DON'T KNOW WHETHER THE
PROGRAM WILL CONTINUE TO PASS
2025 SO THIS IS AND OTHER THINGS
I HAVEN'T ADDRESSED YOUR
COMMENTS WERE ALL GREAT BUT, YOU
KNOW.
ON THE SPOT I CAN'T REMEMBER
WELL.
>> LET'S SEE IF KEVIN HAS
ADDITIONAL COMMENTS.
>> I SEE RAFAEL AND LET ME OPEN
UP THE FLOOR.
>> THANK YOU FOR AN EXCELLENT
PRESENTATION.
MY NOTES WILL BE AVAILABLE IF
YOU'RE INTERESTED WHICH IS A
HINT I HAVE NOTES.
>> WE'D LOVE TO HAVE YOUR NOTES.
>> OF COURSE.
I WANT TO THANK THE KIDS FIRST
PROGRAM FOR THE PROGRAM WORK
DONE TO COLLECT MORE THAN 20,000
GENOMES AND INVESTIGATING MORE
THAN 1900 UNIQUE CONDITIONS AND
FOSTERING THE KIND OF RESEARCH
THAT'S COLLABORATIVE AND
FOCUSSED ON HEALTH.
AND FOCUSSING ON CHILDREN WITH
CHILDREN WITH RARE DISORDERS AND
CHILDREN ARE OFTEN SECOND,
THIRD, FOURTH OR FIFTH IN TERMS
OF PRIORITY AND UNIQUE IN ITS
VISION IN SUPPLEMENTING EXISTING
RESEARCH EFFORTS WHICH IS OFTEN
CRITICAL TO ADDING CHILDREN AS A
FOCUS TO OTHER LARGE
MULTI-CENTER INITIATIVES.
LOOKING AT THE KIDS FIRST DRC,
SOUNDS LIKE CHRIS AND I DID THE
SAME THING, INDEXING DATA FROM
OTHER PROGRAMS SUCH AS TARGETS
AND OTHERS AND THE BRAIN TUMOR
ATLAS AND PBG IN LONDON ADDING
TO THE RESOURCES.
VERY STRONG.
ENCOURAGE COLLABORATION AND A
ONE STOP SHOP FOR INVESTIGATORS
AT ALL STAGES UP THEIR
SCIENTIFIC CAREERS TO MEET MORE
AND FACILITATE THE RESEARCH.
BEFORE I ASK QUESTIONS THOUGH
IT'S IMPORTANT FOR ME TO
DISCLOSE MY BIASES AS
PEDIATRICIAN AND BIO INFORMATICS
RESEARCHER AND MENTOR TO PEOPLE
AT THE NIH WORKING ON OTHER
REPOSITORIES INCLUDING MICHAEL
CHANG AND JOSH DENNY THE CEO OF
THE "ALL OF US" PROGRAM KICKED
OFF AFTER THE LAUNCH OF KIDS
FIRST.
THOUGH I'M SUPPORTIVE OF AND
WILL VOTE IN FAVOR OF CONTINUING
THE KIDS FIRST PEDIATRIC
RESEARCH PROGRAM I'M BEING
THOUGHTFUL ABOUT THE INITIAL
VISION OF THE ACT WHICH CALLED
FOREUSE OF THE FUNDS TO
SUPPLEMENT AND NOT SUPPLANT
EXISTING NIH, CLOSE PARENTHESES
RESEARCH EFFORTS.
I'M WONDERING IF THE FUNDS
SHOULD NOT FOCUS ON THE
DRC AND FOCUS ON SUSTAINABILITY
PORTAL WITH THE ALL OF US
PROGRAM.
A
AND TAKE FUNDS AND DIRECTING
THEM TO OTHER APPROACHES TO
COMBAT STRUCTURAL BIRTH DEFECT
AS WE LEARN ABOUT ALLOSTATIC
LOAD ALL OF WHICH MAY INCREDIBLE
THE BIOLOGIC PHENOMENA SHOULDN'T
FUNDING BE INVOLVED TO CREATE
NEW DATA RESOURCES OR EXTENDING
EXISTING ONES?
THOUGH POSSIBLY OUTSIDE THE
SCOPE I CAN'T HELP BUT THINK
ABOUT A.I. AND THE ROLE IT CAN
PLAY IN IMPROVING THE DISABILITY
ASSOCIATED WITH THESE DISEASE.
WHAT ROLE SHOULD A.I. AND BIO
MEDICINE BE PLAYING AND NEXT
GENERATION ADVANCED USES OF
ROBOTICS PLAY IN SURGERY AND ARE
THERE OTHER NEW PROGRAMS THAT
SHOULD BE SUPPLEMENTED AND MY
QUESTION IS ABOUT THE PROPOSED
ACTIVITIES AND NOT THE NEED FOR
THE PROGRAM.
I SUPPORT THE PROGRAM BUT REALLY
QUESTION BECAUSE IT FEELS LIKE
IT'S ACTUALLY SUPPLANTING
EXISTING RESEARCH EFFORTS.
THE LEGISLATION NO LONGER SAYS
NOT SUPPLANT IT SAYS SHOULD
RETIRE TIES THOSE EFFORTS
LARGELY IN THE RECOGNITION THAT
OTHERS ARE NOW DOING WHOLE
GENOME SEQUENCING OF PATIENTS AN
OTHER CONDITIONS OR IN THE CASE
OF THE ALL OF US PROGRAM FOR
HEALTHY INDIVIDUALS OR WILL BE
DOING PEDIATRIC SEQUENCING BUT
HAVEN'T STARTED YET.
WE SET THE PROGRAM UP AND ALMOST
10 YEARS AGO AND IT WASN'T
SOMETHING OTHER PROGRAMS WERE
DOING.
THE POINT WE SHOULD BE NIMBLE
AND ADAPT AND POSSIBLY PARTNER
WITH OTHER PROGRAMS IS WELL
TAKEN BUT I ALSO THINK IT'S
IMPORTANT TO HAVE A DATA
PLATFORM AND SYSTEM FOCUSSED ON
A FLAVOR OF RESEARCHER SO THEY
CAN BE FAMILIAR WITH THE TOOLS.
THEY DON'T HAVE TO LEARN
MULTIPLE PLATFORMS AS THE ALL OF
US PROGRAM OR OTHER PROGRAMS
MATURE.
YOU'RE POINT'S WELL TAKEN AND WE
SHOULDN'T BE EVER LOCKED INTO
FOREVER FUNDING A GIVEN RESOURCE
BUT I THINK FOR THE NEXT FIVE,
POSSIBLY, 10 YEARS HAVING THIS
AS A SEPARATE DATA RESOURCE
CENTER IS PROBABLY WARRANTED BUT
THINGS MIGHT MOVE MUCH FASTER.
INCORPORATING THINGS LIKE
ARTIFICIAL INTELLIGENCE OR
MACHINE LEARNING IS CERTAINLY
SOMETHING THAT THE RIGHT
PEOPLE -- I SHOULD SAY, ONE
THING -- WE'RE NOT DOING THIS
AND WE WERE REQUIRED TO RESTRICT
OURSELVES BY THE LANGUAGE TO
GRANT FOR PEDIATRIC RESEARCH.
AND THE VALUE OF THAT IN MY MIND
IS WE'RE NOT JUST DOING DATA
GENERATION CONTRACTS BUT WE HAVE
GRANTEES WHO ARE LOOKING TO
ADVANCE THEIR ACADEMIC CAREERS
AS IT WERE AND ALWAYS LOOKING
FOR THE NEXT HORIZON AND
PROVIDING THE CREATIVITY STO
PROVE THE PROGRAM FORWARD AND
LISTENED TO OUR GRANTEES AND
THERE'S NEW TECHNOLOGY THAT YES,
THEY'LL PROBABLY BE FOCUSSED ON
ONE CONDITION OR ANOTHER IN
TERMS OF THE UTILITY BUT THERE'S
SPATIAL PROTEOMIC SYSTEMS
PREVIEWED IN THE LAST MEETING
THAT ARE SPECTACULAR WHAT THEY
CAN DO WITH BIOLOGY AT PRESENT.
WE WANTED TO OFFER WHAT WE CAN
WE HAVE FOR CAREFUL ABOUT
PRIORITIZING EFFORTS THAT ARE
NOT DOING ANOTHER MUCH MORE WELL
FUNDED PROGRAM DOES.
YOUR COMMENTS WILL BE TAKEN TO
HEART, PLEASE ME.
-- BELIEVE ME.
>> THANK YOU, BOTH FOR THAT.
WITH EIGHT MINUTES AND THREE
HANDS TO RAFAEL AND THEN HAPPY
AND KEN.
>> ON COMMENTS THERE'S A GENERAL
COMMENT I ALWAYS MAKE WHEN
THERE'S FUNDING FOR DATA
GENERATION AND THE GENERAL
APPROACH IS TO MAKE THE DATA
AVAILABLE TO ALL DEVELOPERS OUT
THERE AND HUNDREDS THAT WOULD
WANT TO DEVELOP TOOLS AND IT
WON'T COST ANYTHING AND WE HAVE
A THOUSAND PEOPLE WORKING ON IT
OPPOSED TO A SMALL GROUP AND
JUST WANTED TO POINT THAT OUT.
THE OTHER COMMENT I WANTED TO
MAKE IT SEEMS LIKE THE
MANAGEMENT AND STORING OF DATA
CAN PIGGY BACK ON OTHER
PROJECTS.
IT SEEMS LIKE THERE SHOULDN'T BE
TWO SEPARATE PROJECTS BECAUSE
THEY HAPPEN TO BE KIDS.
I'LL STOP THERE.
>> IN TOOL DEVELOPMENT OUR DATA
RESOURCE CENTER HAS BEEN DOING
SOME AND WE PROVIDE FUNDS FOR
THAT BUT A LOT OF THE EFFORTS
HAVE BEEN THROUGH INDIVIDUALS
AND AS WELL AS CLOUD CREDITS FOR
PEOPLE WHO WANT TO DO TOOL
DEVELOPMENT.
WE'RE CERTAINLY OPEN TO PEOPLE
FROM THE OUTSIDE COMMUNITY, I
BELIEVE GRANTS ARE THE WAY TO GO
FOR THIS PEOPLE WILL MAKE IT
WORK IF THEY POSSIBLY CAN.
YEAH, WELL SAID.
I'M NOTE -- NOT SURE I AGREE ON
THE ONE SITE FITS ALL TYPE THING
BUT WE WILL AND HAVE BEEN
WORKING TRYING TO BE
INTEROPERABLE WITH THE OTHER
DATA SYSTEMS AND CAN ACHIEVE
THAT AND THEN AN INDIVIDUAL
COULD GO TO THE SITE WHERE THE
TOOLS AND SETUP IS MOST
CONDUCIVE TO WHAT THEY WANT AND
WHAT THEY'VE LEARNED HOW TO
NAVIGATE AND STILL HAVE ACCESS
FOR OTHER DATA SOURCES.
I PERSONALLY THINK THAT'S A
BETTER WAY TO GO THAN THE ONE
SITE FOR EVERYONE.
WE DON'T WANT TO SILO THE DATA
FOR SURE.
AND THEY COULD SIT DOWN AT THEIR
COMPUTER, LOG ON TO A SITE AND
AT LEAST DETERMINE WHETHER THE
PROJECT THEY WANT TO DO IS
REASONABLE AND GO FROM THERE BUT
DOING THAT BY SEARCHING ACROSS
THE DATA WOULD BE THE WAY TO GO.
>> HAPPY?
>> IN PREDIAGNOSIS OF CONDITIONS
AN DISRUPTION TO ABORTION ACCESS
MAY CHANGE THE EPIDEMIOLOGY OF
CHILDREN WHO ARE ELIGIBLE FOR
KIDS FIRST THAT IS ONE
CONSIDERATION.
THE SECOND IS SINCE CHILDREN ARE
LIMITED TO KIDS WHO SURVIVE AND
IF THERE'S AN OPPORTUNITY TO
ASSESS TISSUE OR BLOOD SAMPLES
FROM FETAL LOSS AND THE THIRD
POINT IS THERE AN OPPORTUNITY TO
ENROLL ZYGOTIC TWINS TO DISCERN
GENETIC FROM ENVIRONMENTAL
GENEALOGY.
>> ABSOLUTELY BUT WE'VE BEEN
USING WHAT'S CALLED THE EXO 1
MECHANISM TO RECRUIT COHORTS AND
THAT DEPENDS ON AN INVESTIGATOR
APPLYING A PREVIOUS MECHANISM
THAT PROVIDES SEQUENCING
SERVICES FOR THAT SO WE WOULD BE
OPEN TO ANY OF THE THINGS THAT
YOU MENTION FOR SURE.
IT'S NOT THAT WE ARE GOING OUT
AND STARTING A COHORT OURSELF.
WE'RE ASKING THE RESEARCH
COMMUNITY OF INVESTIGATORS TO
ASSEMBLE THEM AND PRESENT THEM
TO US THROUGH THIS XX 01
MECHANISM.
>> AND KEN THE FINAL QUESTION.
>> IT'S AN ADMINISTRATIVE
QUESTION.
I BELIEVE WE'RE BEING ASKED TO
EXTEND THE COMMON 10 YEAR
PROJECT WHICH I COMPLETELY
SUPPORT BUT THE COMMON FUND
PROJECTS ARE BY AND LARGE POLICY
TERMINATED AT 10 YEARS.
SO ARE WE NOW CHANGING OUR
POLICY TO ALLOW A COMMON FUND
PROJECT TO EXTEND BEYOND 10
YEARS AND IF SO, HOW DOES THAT
AFFECT CURRENT AND FUTURE COMMON
FUND PROJECTS?
>> THE LIMITED COMMENTS I CAN
SAY ABOUT THAT BECAUSE I'M NOT
COMMON FUND OR DPCPSI BUT THE
LEGISLATION TRANSFERS THE
PROGRAM TO DPCPSI AND THE COMMON
FUND WOULD NO LONGER BE A COMMON
FUND PROGRAM AND HOW IT'S
MANAGED AT THAT LEVEL IS AN
EXAMPLE OF NOT PAY GRADE BUT
MAYBE SOMEONE CAN COMMENT.
>> THAT'S THE GIST.
DOUG, DO YOU WANT TO WEIGH IN?
>> I CAN SAY THAT JAMES IS
RIGHT, IT WOULD BE A DPCPSI
PROGRAM.
WE HAVE HAD CONVERSATIONS WHAT
THE WORKING GROUP WOULD PREFER
TO DO AND HOW BEST TO ADMINISTER
IT AND OSC, THE OFFICE THAT
ADMINISTERS COMMON FUND IS HAPPY
TO CONTINUE TO HELP FACILITATE
THE PROGRAM BECAUSE WE HAVE THE
INFRASTRUCTURE TO DO THAT ON
BEHALF OF DPCPSI BUT NOT AN
EXTENSION OF THE COMMON FUND
PROGRAM.
>> THAT'S AN IMPORTANT
DISTINCTION TO MAKE.
THANKS.
>> GREAT, WITH THAT I'M NOT
SEEING ADDITIONAL HANDS OR SO
LET ME TURN IT OVER TO FRANCISCA
TO CALL FOR A VOTE.
>> WE HAVE THE LAST QUESTION
RESOLVED AND WE HEARD MANY OTHER
INTERESTING IDEAS AND
SUGGESTIONS AND I TRUST THAT THE
PROGRAM TEAM AND THE PROGRAM
COORDINATORS WILL TAKE THEM INTO
CONSIDERATION.
I ALSO HEARD JAMES CLEARLY SAY
HE WOULD LOVE TO HAVE KEVIN'S
NOTES SO IF YOU HAVE ANYTHING
YOU WANT TO SHARE.
HAVING SAID THAT, ALL CALL FOR
THE VOTE FOR THE PRESENT
CONCEPT.
DO I HAVE A MOTION OF APPROVAL
OF THE CONCEPT CLEARANCE KIDS
FIRST 2.1.
I SEE THE MOTION.
IS THERE A SECOND?
I SEE A SECOND.
AT THIS POINT I'M GOING TO ASK
IS THERE ANY ADDITIONAL
DISCUSSION?
I DO NOT SEE DISCUSSIONS OR
HANDS ESPECIALLY IF I GO BACK TO
BROAD VIEW.
WITH THAT I'LL TURN IT OVER TO
CHRISTINA THE VOTE.
>> THANK YOU.
AS YESTERDAY THE POLL SHOULD
AUTOMATICALLY APPEAR AND PLEASE
REMEMBER TO HIT SUBMIT AFTER
YOUR VOTE AND AS A REMINDER ONLY
COUNCIL MEMBERS SHOULD
PARTICIPATE IN THE POLL.
POLL WILL CLOSE AFTER 30 SECONDS
AND THE POLL IS STARTING NOW.
YOU HAVE ABOUT 15 SECONDS
REMAINING TO CAST YOUR VOTE.
THE POLL IS NOW CLOSING.
I WILL NOW SHARE THE RESULTS
WITH THE MEETING.
THE MOTION AS STATED HAS PASSED.
THANK YOU.
>> THIS, CHRISTICHRISTINA.
>> GREAT, THANKS AGAIN JAMES FOR
ALL OF YOUR WORK ON THIS AS WELL
AS THE FOLKS ON THE COMMON FUND
TEAM OVER THE YEARS.
SO WE'RE RIGHT ABOUT AT TIME SO
THAT'S GREAT.
I'M GOING TURN IT OVER TO SOME
OF THE FOLKS IN THE OFFICE OF
INTRAMURAL RESEARCH TO TALK
ABOUT OUR SECOND CONCEPT
CLEARANCE FOR TODAY AND HAPPENS
TO BE THE LAST ONE OF THIS
COUNCIL MEMBER ROUND.
SO WE HAVE DR. NINA SCHOR THE
INTERIM DEPUTY DIRECTOR FOR RRP
AND JANICE LEE AND THE DIRECTOR
OF NIDCR AND DIRECTOR OF
DEVELOPMENT AND SUPPORT WITHIN
THE OFFICE OF INTRAMURAL
RESEARCH.
THEY'RE GOING TO GIVE AN
OVERVIEW ON THE UPDATE OF THE
NIH CLINICAL RESEARCH SCHOLARS
PROGRAM THAT WE HOPE WILL MOVE
FORWARD FOR CONCEPT CLEARANCE
HERE WITH ADDITIONAL DISCUSSION
FROM DOCTORS JOHNSTON.
WITH THAT OVER TO NINA FIRST.
>> THANK YOU.
THANKS TO ALL OF YOU.
WE'RE REALLY VERY EXCITED AND
VERY PROUD TO TELL YOU A LITTLE
BIT ABOUT THE NIH LASKAR
CLINICAL RESEARCH SCHOLARS
PROGRAM.
I'M GOING TO BEGIN BY SETTING
THE STAGE FOR WHY IT IS THAT
WE'RE IN FRONT OF YOU TODAY FOR
CONCEPT CLEARANCE.
SO IF I COULD HAVE THE NEXT
SLIDE.
SO THIS IS A REQUEST FOR
RE-ISSUE OF PAR-23-156 FOR THE
PROGRAM A CAREER DEVELOPMENT
PROGRAM THAT EXISTS TO SUPPORT
CLINICAL RESEARCHERS IN THE
EARLY STAGES OF THEIR
INDEPENDENT RESEARCH CAREERS.
WE TYPICALLY GIVE THREE TO SIX
AWARDS PER YEAR AND THE PERIOD
INCLUDES BETWEEN FIVE AND SEVEN
YEARS OF INTRAMURAL WORK AS AN
INDEPENDENT PRINCIPLE
INVESTIGATOR AND THEN EITHER
REMAINING WITHIN THE NIH
INTRAMURAL PROGRAM AND GOING UP
FOR TENURE OR GOING ON TO THREE
YEARS FUNDED BY THE NIH IN AN
INTRAMURAL INSTITUTION AND THE
VOTE IS TO OBTAIN A VOTE FOR YOU
FOR THE CONTINUATION OF THE
LASKAR CLINICAL RESEARCH
SCHOLARS PROGRAM.
SO A PRESENTATION WAS MADE AND
THE COUNCIL APPROVED REISSUING
THIS NOTICE OF FUNDING
OPPORTUNITIES FOR TWO YEARS BUT
ASKED WITHIN THOSE TWO YEARS WE
HAVE AN OUTSIDE BLUE RIBBON
PANEL REVIEW THE PROGRAM AND
PROVIDE RECOMMENDATIONS TO THE
COUNCIL OF COUNCILS.
YOU'LL SEE THE ACTIONS TAKEN.
WE HAD A FORMAL OUTSIDE VIEW OF
THE PROGRAM PERFORMED ON JUNE
29, 2023.
THERE WAS A COMMITTEE AND THE
ADVISORY COMMITTEE TO THE DEPUTY
DIRECTOR FOR INTRAMURAL
RESEARCH.
THE COMMITTEE RECOMMENDED STRONG
SUPPORT FOR CONTINUING AND EVEN
EXPANDING THE PROGRAM.
AND WE ARE NOW ASKING YOU TO
VOTE FOR THE CONTINUATION OF
THIS PROGRAM.
AND ON THE NEXT SLIDE, YOU'LL
SEE DATA THAT WILL HELP YOU
UNDERSTAND A LITTLE BIT WHAT WE
HOPE THE PROGRAM WILL ACHIEVE SO
I'M GOING TO ASK CHARLES DEAROLF
TO CONTINUE WITH THE DATA.
>> THANK YOU AND GOOD AFTERNOON.
I'M THE CENTRAL COORDINATE ARER.
THERE'S BEEN A LONG STANDING
DECREASE IN THE NUMBER OF
CLINICIAN ARE FULL-TIME
RESEARCHERS.
THIS SLIDE SHOWS DATA FROM
CLOEGZ.
AS YOU CAN SEE BOTH THE
PERCENTAGE AND THE NUMBER OF
POSITIONS WHO ARE FULL-TIME
RESEARCHERS HAS CONTINUED TO DIM
IN SINCE 1985.
RECOGNIZING THIS CONCERN THE
LASKAR SCHOLARS PROGRAM WAS
INITIATED AS ONE APPROACH TO
CLINICAL RESEARCHERS AND MAKES
AN INVESTMENT AT THE EARLY STAGE
OF THEIR INDEPENDENT TENURE
TRACK CAREER AND TAKE ADVANTAGE
OF THE INTRAMURAL PROGRAM AND
SIMULTANEOUSLY ESTABLISHING
THEMSELVESES APPEAR-REVIEWED
NIH-FUNDED INVESTIGATORS.
THE AGE ARE EARLY STAGE CLINICAL
RESEARCHERS WHO HAVE THE ABILITY
AND EXPERIENCE TO CONDUCT
INDEPENDENT RESEARCHERS.
WE HAVE PHYSICIAN, DENTIST AND
NURSE RESEARCHERS.
RECOGNIZING THE CAREER PATHS FOR
CLINICAL RESEARCHERS ARE NOT
ALWAYS LINEAR, WE HAVE A FAIRLY
BROAD ELIGIBILITY REQUIREMENT
CANDIDATES CAN BE TENURE.
IN PRACTICE THE MAJORITY OF
SCHOLARS WERE AT THE LEVEL OF
NON-TENURE TRACK INSTRUCTORS IN
THE EARLIEST YEAR OF ASSISTANT
PROFESSOR POSITION OVER STAFF
PERMISSIONS AT THE TIME THEY
APPLY.
IN PHASE 1, THEY COME FOR FIVE
YEARS WHICH CAN BE EXTENDED
ANOTHER TWO YEARS.
THEN AS MENTIONED EARLIER
THERE'S A BRANCH POINT.
SCHOLARS CAN REMAIN IN THE
PROGRAM BY MUTUAL AGREEMENT FOR
LEAD TO AN EXTRAMURAL POSITION
OF RO1 FUNDING UP TO $500,000 IN
DIRECT COSTS FOR THREE YEARS.
IT COMES FROM THE NIH INSTITUTE
SPONSORING THE SCHOLAR AND EACH
YEAR WE GIVE THE INSTITUTES THE
OPTION WHETHER TO PARTICIPATE.
THERE ARE BROAD BENEFITS TO THE
PROGRAM.
SOCIETY BENEFITS BECAUSE OF THE
RESEARCH CONTRIBUTIONS THE
SCHOLARS MAKE AND WILL CONTINUE
TO MAKE.
FROM THE INTRAMURAL POINT OF
VIEW THEY PERCEIVE MORE OPTIONS
DOWN THE ROAD AND THE PROGRAM
ENHANCE THE NIH GOAL OF
SUPPORTING CLINICAL RESEARCH BUT
THE BULK OF THE FUNDING COMES
FROM THE INTRAMURAL PROGRAM
PARTICULARLY DURING THE
CHALLENGING EARLY STAGE OF THE
CAREERS.
THERE ARE MULTIPLE BENEFITS TO
THE SCHOLARS.
SCHOLARS CONDUCT WITHIN THE
SUPPORTIVE ENVIRONMENT OF THE
NIH INTRAMURAL RESEARCH PROGRAM.
WE HAD THE CLINICAL CENTER WHICH
IS THE NATION'S LARGEST HOSPITAL
DEVOTED ENTIRELY TO CLINICAL
RESEARCH.
THE INTRAMURAL PROGRAM SUPPORTS
THE TRANSLATION OF RESEARCH
FINDINGS INTO THE CLINIC AND
OFFERS STATE OF THE ART
RESOURCES AN CENTRALIZED IRB AND
ETHICS DEPARTMENT AND THEY'RE
FULLY FUNDED BY THE INTRAMURAL
PROGRAM AND DO NOT HAVE TO WRITE
FOR GRANT FUNDING AND
OBLIGATIONS TO BRING IN INCOME
THROUGH SEEING PATIENTS.
SOME SCHOLARS CONTINUED AS
ADJUNCT PROFESSORS AT THEIR
PREVIOUS INSTITUTION FURTHER
THE, RO COMPONENT HAVE DOCUMENTS
SUCCESS IN COMPETING NIH FUNDS.
HERE ARE OUR SCHOLARS.
SINCE TE THE BEGINNING WE'RE
PLEASED THERE'S A BALANCED
DISTRIBUTION BETWEEN MEN AND
WOMEN AND SEVEN SCHOLARS ARE
MEMBERS OF UNDER REPRESENTED
GROUPS IN RESEARCH.
THE SCHOLARS ARE SPONSORED BY 11
NIH INSTITUTES.
THE CANCER INSTITUTE HAS THE
MOST WHICH IS NOT A SURPRISE
SINCE THAT IS THE LARGEST
INSTITUTE.
COLLECTIVELY THE SCHOLARS WORK
ON A WIDE RANGE OF IMPORTANT
CLINICAL PROBLEMS.
AS INDICATED IN A PREVIOUS SLIDE
WE PILOTED THE PROGRAM IN THE
2011-2012 REALM AND CONTINUED
ANNUALLY WITH THE EXCEPTION OF
SOME APPLICATION CYCLES.
SEVEN SCHOLARS OBTAINED TENURE
IN THE PROGRAM.
OF NOTE, 11 HAVE REACHED THE RO
BRANCH POINT AND EIGHT REMAINED
AND NOT REQUESTED FUNDS WHERE AS
OTHERS REVIEWED THE FUNDS AND
WE'RE SEEING THE MAJORITY DO NOT
REQUEST THE EXTRAMURAL FUNDING.
THREE SCHOLARS LEFT PRIOR TO THE
INITIATION OF THE PHASE AND
OBTAINED SENIOR POSITIONS IN
INDUSTRY OR KAISER PERMANENTE
AND OTHERS REMAIN IN GOOD
STANDING IN THE TENURE TRACK.
I WANT TO POINT OUT ALL THE
SCHOLARS EVEN THOSE WHO LEFT THE
NIH REMAIN ENGAGED IN BIOMEDICAL
RESEARCH ACTIVITIES.
WE THINK THIS SPEAKS WELL OF THE
SCHOLARS AND THE PROGRAM.
THIS GIVES STATUS AND THOSE WITH
LEFT WITH THE RO FUNDS OR FOR A
MORE ADVANCED POSITION.
ONE SCHOLAR IS NOW A BLOOMBERG
PROFESSOR AT JOHNS HOPKINS.
A SCHOLAR FROM 2015 IS
CO-DIRECTOR AN IMMUNOTHERAPY
CENTER AT RUTGERS AND ANOTHER A
UNIVERSITY OF CALIFORNIA SAN
DIEGO.
THE OTHER SCHOLAR STATE THE NIH
THROUGH THE PROGRAM AND LATER
MOVED ON TO GEORGE WASHINGTON
UNIVERSITY.
I CAN ADD ADDITIONAL INFORMATION
TO HIS STATUS.
HE'S NOW ALSO THE FOUNDER AND
CEO OF MOBIAS AN EARLY STAGE BIO
TECHNOLOGY COMPANY TARGETING THE
ROOT CAUSES OF CHRONIC DISEASES.
.
THE COUNCIL ASKED US TO CONDUCT
AN INDEPENDENT REVIEW OF THE
PROGRAM AND JANICE LEE WILL TELL
YOU ABOUT THE REVIEW.
>> THANK YOU.
IT'S A PLEASURE TO BE HERE AND
PRESENT THE FINDINGS OF THE
REVIEW.
THIS WAS A WORKING GROUP FOR THE
ADVISORY COMMITTEE TO THE DEPUTY
DIRECTOR FOR INTRAMURAL
RESEARCH, DR. SCHOR AN REVIEWED
THE PROGRAM ON JUNE 29 OF LAST
YEAR.
THE COMMITTEE WAS CHAIRED BY
DR. ABASH.
JOINED BY FIVE OTHER COMMITTEE
MEMBERS.
THE COMMITTEE WAS PROVIDED WITH
A HOST OF INFORMATION INCLUDING
AN OVERVIEW THEIR PROGRAM,
SUMMARY OF ALL THE SCHOLARS PLUS
THEIR TOP PUBLICATIONS.
WE DID A BIBLIOMETRIC ANALYSIS
OF THE SCHOLARS AND COMPARISON
TO CLINICAL EARLY STAGE
INVESTIGATORS BY THE OFFICE OF
PORTFOLIO ANALYSIS IN DPCPSI.
WE PROVIDED A SUMMARY OF
INDIVIDUAL SCHOLAR ACTIVITY FOR
THE CLINICAL PROTOCOLS AT THE
NIH CLINICAL CENTER AND PROVIDED
THEM WITH SURVEY RESULTS FROM
THE SCHOLARS THEMSELVES AND HIS
WAS CONDUCTED IN 2021.
WE ALSO NOTED THAT A FEW
QUESTIONS CAME UP AND PROVIDED A
LIST OF SCHOLARS THAT ARE
PROCEDURALIST AND NOTED A LETTER
OF SUPPORT FROM THE LASKAR
FOUNDATION AND FINALLY AT THE
MEETING WE HAD TWO SCIENTIFIC
PRESENTATIONS BY OUR TENURED
SCHOLARS AND THEN AN OPEN
DISCUSSION WITH A PANEL OF SIX
CURRENT SCHOLARS.
THE COMMITTEE FELT STRONGLY WE
SHOULD CONTINUE SUPPORT FOR THE
LASKAR PROGRAM.
THE FEATURES ARE MOST CRITICAL
TO THE SUCCESS WHICH INCLUDE
PROVISION OF SUFFICIENT
PROTECTED TIME FOR RESEARCH,
SUFFICIENT RESEARCH FUNDING,
MENTORING AND RESEARCH
INFRASTRUCTURE AND WITH
SIGNIFICANT HELP FOR THEIR
TRANSITION TO INDEPENDENCE.
AND THERE'S A MENTORING PROGRAM
THROUGH OIR.
THE THEY ALSO SUGGESTED THAT WE
FOCUS ON INCREASING PROGRAM
VISIBILITY WHETHER THROUGH
PROGRAM STAFF OR SCHOLARS OR
GRADUATES OF THE PROGRAM.
WE HAVE BEEN WORKING THROUGH
ISSUES.
THE COMMITTEE DID POINT OUT THEY
STRONGLY RECOMMENDED DOCUMENTING
THE ACCOMPLISHMENTS AND AND
PROMOTE THE PROGRAM THROUGH
ACADEMIC MEDICAL CENTER,
CLINICAL DEPARTMENT CHAIRS TO
DEMONSTRATE THE IMPORTANCE OF
PROVIDING SUFFICIENT PROTECTED
TIME AND INFRASTRUCTURE TO ALLOW
FOR THE SUCCESSFUL TRANSITION TO
INDEPENDENCE.
AND THE SCHOLARS ARE NOW
EXPECTED TO HAVE A MENTORING
COMMITTEE.
DR. HASHIMOTO SUPPORTS THE
LASKAR AND ALSO PROVIDES
GUIDANCE.
WE ALSO PROVIDE FACULTY
PROFESSIONAL DEVELOPMENT
WORKSHOPS.
THERE'S ALSO INFORMAL PEER
MENTORING WHICH CAME UP THROUGH
THE SURVEY.
SOME OF THE INFORMAL MENTORING
OCCURS WITHIN THE SAME INSTITUTE
BUT A NUMBER OF SCHOLARS HAVE
OFFERED THEMSELVES TO NEW
SCHOLARS AND ACROSS INSTITUTES.
WE THINK IT PROVIDES A ROBUST
COMMUNITY AND 12 ARE PART OF THE
DISTINGUISHED SCHOLARS PROGRAM.
FOR THOSE NOT FAMILIAR IT
SUPPORTS INVESTIGATORS WITH A
DOCUMENTED HISTORY OF I AM
PROVING DIVERSITY AND INCLUSION
IN OUR BIOMEDICAL WORKFORCE.
THIS ALLOWS FOR ADDITIONAL
MENTORING AND MANY MORE COHORT
ACTIVITIES.
AND WILL VOTE ON CONTINUING OF
THE LASKAR'S CLINICAL RESEARCH
PROGRAM AND WE'RE HAPPY TO TAKE
QUESTIONS AT THIS TIME.
THANK YOU.
>> DR. JOHNSTON.
>> CONGRATULATIONS TO YOU ALL ON
A GREAT PROGRAM AND THANK YOU
FOR THE PRESENTATION.
I'M A HUGE FAN OF THE PROGRAM
AND FEEL LIKE IN THIS MOMENT NOW
THEN NOW MORE THAN EVER WE NEED
PROGRAMS LIKE THIS.
SO BOTH IN THE POSTCOVID ERA AND
ALSO AS WE DISCUSSED OVER THE
LAST DAY AND A HALF IN THE
ENVIRONMENT OF BUDGETARY
UNCERTAINTY THE PROGRAMS ARE
CRITICAL AND ONE OF THE THINGS
THAT YOU HEARD OVER THE LAST
SEVERAL DAYS DURING COUNCIL IS
THAT THE EARLY CAREER
DEVELOPMENTS PROGRAMS ARE A HUGE
PRIORITY WITH THE NIH.
I'M A HUGE FAN OF THE PROGRAM.
I APPRECIATE THE RECOMMENDATIONS
OF THE EXTERNAL REVIEW TEAM AND
THE PROGRAM HAS REAL
OPPORTUNITY.
A COUPLE THINGS I WANTED TO
THINK ABOUT OUT LOUD WITH YOU
GUYS ABOUT THE EVOLUTION OF THE
PROGRAM.
FIRST OF ALL MENTORING, I'M SO
HAPPY TO HEAR YOU'RE DOING WHAT
I CALL NEAR PEER MENTORING,
BUILDING THE NETWORKS.
I THINK THAT'S CRITICALLY
IMPORTANT.
THANK YOU FOR BUILDING THAT IN.
THE OTHER TWO PIECES THAT I
PICKED UP ON MOSTLY IN THE
SURVEY DATA ARE THAT NUMBER ONE,
THE SCHOLARS DEMONSTRATED A LACK
OF SATISFACTION WITH THE
MENTORING AND SUPPORT THEY'RE
GETTING FOR WHAT THEY CALL
WORK-LIFE BALANCE.
I THINK BUILDING THAT IN AS A
MENTORING AND SUPPORT COMPONENT
CAN BE CRITICAL FOR THE
SCHOLARS.
THE OTHER THING AND I THINK THIS
WAS MENTIONED BY THE PANEL WAS
THAT TAKING THE OPPORTUNITY TO
ACTUALLY GROW THE SCHOLARS PAST
FUTURE MENTORS IS ANOTHER EASY
OPPORTUNITY.
THAT'S ONE THING THE MENTORING
PROGRAM AND GLAD YOU'RE
FOCUSSING ON THAT.
THE SECOND THING THAT I NOTICED
IS THE APPLICANT POOL YOU'RE
GETTING HAS REMAINED STAGNANT
THOUGH THE PROGRAM HAS DEVELOPED
OVER 10 YEARS.
I APPRECIATE YOU HAVE SEVEN
UNDER REPRESENTED SCHOLARS IN
THE GROUP YOU'VE HAD SO FAR BUT
I THINK THERE'S AN OPPORTUNITY
TO GROW THAT AND GROWING THE
SCIENTIFIC DIVERSITY.
IT FELT TO ME LIKE IT WAS
HEAVILY -- THE PHYSICIAN
SCIENTISTS NOT AS MANY NURSE
SCIENTISTS AS I WAS HOPING TO
SEE AND FEW DENTAL SCIENTIST AND
ONE THING WE TALKED ABOUT A
LITTLE BIT YESTERDAY IS HOW DO
WE BRING IN THE VETERINARY
MEDICINE COMMUNITY, THOSE
SCIENTISTS BECAUSE THEY HAVE A
LOT TO OFFER AND A WONDER IF
THAT'S AN OPPORTUNITY AS WELL.
I KNOW THE COMMITTEE RECOMMENDED
YOU BROADEN THE MECHANISM OF
PULLING IN ADVERTISING AND
PULLING IN THOSE SCIENTIFIC
COMMUNITIES TO APPLY.
THE THIRD THING THAT STRUCK ME
AS A PHYSICIAN IS I DEFINITELY
GOT THE SENSE THE SCHOLARS WERE
STRUGGLING WITH THEIR CLINICAL
IDENTITIES AND LEADS AS
CLINICIANS TO CONTINUE TO SEE
PATIENTS AND ENROLLING IN
CLINICAL RESEARCH PROTOCOL AND I
WAS HOPING YOU COULD SPEAK A
LITTLE BIT TO THAT.
WHAT IS PLANNED FOR THE FUTURE
TO ADDRESS THE NEEDS OF THOSE
CLINICIAN RESEARCHERS TO
MAINTAIN THAT SKILL SET.
THANK YOU AGAIN.
I'M A BIG FAN OF THE PROGRAM BUT
WOULD LOVE TO HEAR YOUR COMMENTS
ON THE THINGS.
>> I'D LIKE TO POINT OUT THE
QUESTION ON THE CLINICAL VOLUME.
IT IS AN ISSUE OF CONCERN AS YOU
CAN IMAGINE.
A COUPLE THINGS THE CLINICAL
CENTER IS WELL KNOWN FOR RARE
DISEASES AND UNDIAGNOSED
DISEASES.
THAT ALREADY LIMITS THE BROAD
SCOPE OF THE TYPE OF PRACTICE
ANYONE CAN HAVE AT THE NIH
CLINICAL CENTER.
THAT'S ONE OF THE STRENGTHS OF
BEING ABLE TO FOCUS AND DO
SOMETHING DISTINCT FROM THE
EXTRAMURAL PROGRAMS AND ACADEMIC
MEDICAL CENTERS.
SO IT HAS A TWO-EDGE TO THAT
SWORD.
WE'RE AWARE OF THAT AND WE DID
TALK TO OUR SCLORS ABOUT THAT
AND SOME HAVE CONSIDERED AND
CONTINUING TO MAINTAIN
AFFILIATIONS WITH CRITICAL
PROGRAMS EITHER FROM THEIR
ORIGINAL DEPARTMENTS OR MEDICAL
CENTERS LIKE JOHNS HOPKINS AND
REDUCING OBSTACLES LIKE MEDICAL
LICENSING ARE COSTLY AND TIMELY.
THESE ARE THINGS WE CAN FOCUS ON
BUT WE RECOGNIZE THE CLINICAL
VOLUME IS OF CONCERN AND LOOKED
AT THE PROCEDURALISTS.
THAT'S A CONCERN AMONGST THEM.
WE'LL CONTINUE TO REFINE THAT
BUT WE DO ENCOURAGE OR SCHOLARS
TO MAINTAIN ACTIVE RELATIONSHIPS
WITHHI HIHI HIHIGH -- WITH HIGH
PROGRAMS BUT THANK YOU FOR THE
COMMENT.
>> I WANT TO ADD THAT ONE OF THE
ISSUES AROUND NOT JUST
DIVERSIFICATION IN EVERY SINCE
OF THAT WORD OF THE APPLICANT
POOL BUT ENLARGEMENT OF THE
APPLICANT POOL WHICH HAS TENDED
TO BE RELATIVELY SMALL AND
RELATIVELY CLOSE GEOGRAPHICALLY
TO THE NIH AND I REALIZE WE HAD
NOT DONE MUCH BY WAY OF
PUBLICIZING THE EXISTENCE OF THE
PROGRAM.
I REALIZED THAT WHEN WE CALLED
UPON OUR COLLEAGUES TO BE PART
OF THIS BLUE RIBBON PANEL.
AND PEOPLE WOULD SAY I'M HAPPY
TO HELP BUT WHAT IS THAT
PROGRAM?
THESE ARE DEANS AND CHAIRS FROM
AROUND THE COUNTRY.
WE HAVE NOW PUT TOGETHER AND WE
IS ALL THREE OF THE PEOPLE WE
JUST HEARD SPEAK SLIDE SETS THE
SCHOLARS AND OUR FACULTY CAN USE
WHEN THEY GO OUT TO DO GRAND
ROUNDS AROUND THE COUNTRY THEY
CAN SHOW SOMETHING AT THE END OF
THE TALK ABOUT THE PROGRAM AND
WE HAVE A PAPER THAT'S IN THE
FINAL STAGES OF REVIEW FOR
ACADEMIC MEDICINE THAT ACTUALLY
DESCRIBES MANY OF THE RESULTS
YOU'VE SEEN ON THE SLIDES WE
SHOWED TODAY AND AA LOT MORE
ABOUT THE PROGRAM FOR A BETTER
TERM WE HAVE TO DO A MARKETING
CAMPAIGN FOR THIS.
I DON'T THINK PEOPLE HEAR ABOUT
IT AND SAY I'M NOT INTERESTED.
I THINK PEOPLE GENERALLY DON'T
KNOW THIS OPPORTUNITY EXISTS.
>> THANKS, ALL.
LET ME TURN IT OVER FOR
ADDITIONAL COMMENTS.
>> I DO.
THANK YOU.
I CHANNEL A LOT OF KAREN'S
COMMENTS WITH THE EXCEPTION OF
THE WORK-LIFE BALANCE.
I'M OF THE GENERATION THAT HAVE
NONE.
I FIND IT HARD TO RELATE TO
THAT.
YOU RESPONDED TO A LOT OF THE
THINGS MENTIONED.
DON'T RELY ON A PUBLICATION IN
ACADEMIC MED SPIN -- MEDICINE.
GO TO THE AAMC AND TALK TO THE
COUNCIL OF DEANS AND ACTUALLY
REALLY MARKET IT WITH THEM AND
MAYBE THE NEXT STEP IS EVEN
COLLABORATING BECAUSE ONE WAY TO
EXTEND THE PROGRAM IS TO HAVE
THREE OR FOUR PARTNERS TO HELP
YOU NOT ONLY GENERATE PEOPLE FOR
THE PROGRAM BUT IF THEY'RE
WITHIN THE REGION OR THE AREA
HELP PROVIDE SOME OF THE
CLINICAL EXPERIENCE THESE FOLKS
NEED.
TO BE SUPERB IN CLINICAL
RESEARCH YOU OBVIOUSLY HAVE TO
BE SUPERB IN RESEARCH BUT YOU
YEEL HAVE TO BE UP TO -- REALLY
HAVE TO BE SUPERB AND UP TO DATE
ON YOUR CLINICAL SIGHT AND THE
CLINICAL CENTER ISN'T GOOD
ENOUGH AND YOU NEED TO ACTIVELY
LOOK FOR OTHER CLINICAL SITES
AND OTHER ACADEMIC PARTNERS.
I'M A BIG FAN OF THIS KIND OF
PROGRAM.
I'M A GRADUATE OF THE ROBERT
WOOD JOHNSON HEALTH POLICY
FELLOWS PROGRAM WHICH HAS NOW
BEEN GOING ON 50 YEARS.
I CHAIRED THE CLINICAL SCHOLARS
PROGRAM FOR THE ROBERT WOOD
JOHNSON PROGRAM FOR 10 YEARS.
AND THAT'S ANOTHER EXAMPLE OF
CONNECTING WITH UNIVERSITIES TO
THE POINT THAT EVEN AFTER ROBERT
WOOD JOHNSON LEFT THE CLINICAL
PROGRAM AND STOPPED IT, FOUR
UNIVERSITIES KEPT IT GOING AND
STILL DOING.
I THINK THERE ARE OPPORTUNITIES
TO DO MORE THAN THE PUBLICATION
WHICH IS FINE BUT TRY TO EMBED
THIS FIVE TO TEN YEARS FROM NOW
WE'LL HAVE 20 TO 30 TO 40
APPLICANT AS A YEAR RATHER THAN
WHAT YOU'RE GETTING NOW.
AND MY LAST COMMENT IS IS THERE
NO ONE FROM PEDIATRICS
INTERESTED IN THIS?
EVERYBODY SEEMS TO BE ADULT
DRIVEN.
I LOOK AT THE PAST NICHD AND
NICHD ISN'T ON THE LIST.
WE HAVE CLINICAL NEEDS.
I'LL SAY.
>> WE DO HAVE PEDIATRIC
SPECIALIST.
FOR EXAMPLE, WE HAVE A PEDIATRIC
ENDOCRINOLOGIST WHO IS A LASKAR
SCHOLAR.
SO WE DO HAVE SPECIALISTS.
>> THE ISSUE IS NICHD CHOSE NOT
TO PARTICIPATE FOR ALL THESE
YEARS.
THEY'RE GOING TO PARTICIPATE
THIS COMING ROUND.
THEY MAY HAVE LAST ROUND ALSO
BUT THEY'RE REALLY COMING AROUND
TO PARTICIPATING.
WE HOPE WE DO INDEED HAVE
SCHOLARS THAT WILL BE ASSOCIATED
WITH NICHD.
>> WELL, IF NICHD DOESN'T FEEL
LIKE BEING INVOLVED FIND THREE
OR FOUR OF THE BEST CHILDREN'S
HOSPITALS AND PEDIATRICS
DEPARTMENTS IN THE COUNTRY THAT
WOULD LIKE TO BE INVOLVED.
>> THE CRUX OF THE MATTER IS AS
DR. BIANCHI WILL TELL YOU THAT
MOST OF THE PEDIATRICS THAT GOES
ON ON THE NIH CAMPUS NOT HOUSED
AT NICHD.
OUR PEDIATRICS IN THE OTHER
INSTITUTES AND NOW THERE'S A
PEDIATRICIAN THAT'S THE DIRECTOR
OF EXTRAMURAL RESEARCH SO I'LL
GET ON IT.
>> OKAY.
>> I'M RECOMMENDING SUPPORT OF
THIS.
>> LET'S OPEN IT UP FOR BROADER
QUESTIONS FROM THE GROUP.
FIRST GARY AND THEN KENT.
THANKS
>> THANKS.
I THINK THIS IS A PHENOMENAL
PROGRAM BUT ALSO DISAPPOINTED IT
DOESN'T SEEM TO BE WELL KNOWN.
NOT ONLY THE CANDIDATES COME
REGIONALLY BUT WHEN THEY LEAVE,
THEY LEAVE REGIONALLY.
THERE'S A PROFESSOR IN
WASHINGTON, GEORGE WASHINGTON,
HOPKINS AND RUTGERS.
IF YOU COULD BEGIN TO FEED
FACULTY AROUND THE COUNTRY IS A
GREAT WAY FOR THE PROGRAM TO
BECOME BETTER KNOWN.
THE RATIO OF THOSE WHO COME TO
THE NIH AND STAY VERSUS COME IN
AND LEAVE DURING THE R00 PHASE
IS SKEWED TO THE NIH AND PEOPLE
COME AND LIKE IT AND THERE'S
ACTIVATION AND ENERGY TO LEAVE
BUT HAVING THIS PROGRAM REALLY
BE A WAY TO BRING INDIVIDUAL ARE
GOING TO BECOME OUTSTANDING
INVESTIGATORS AROUND THE COUNTRY
WILL SERVE THE COUNTRY A GREAT
PURPOSE AND THE PROGRAM A GREAT
PURPOSE BECAUSE THE PROGRAM WILL
BECOME BETTER KNOWN AND WRITING
A PAPER IN ACADEMIC MEDICINE
WOULD BE GREAT.
NOT SURE HOW MANY PEOPLE WOULD
READ IT.
IT'S WORD OF MOUTH AND HAVING
PEOPLE HEAR AN KNOW ABOUT IT AND
ENCOURAGE TRAINEES TO CONSIDER
IT.
>> I THINK WE ACTUALLY SAW
HAVING THE RECOMMENDATION OF
THIS GROUP TO HAVE A BLUE RIBBON
PANEL COME IN AS AN OPPORTUNITY
TO HAVE PEOPLE FROM ACADEMIC
INSTITUTIONS AROUND THE COUNTRY
ACTUALLY HEAR ABOUT THIS BUT
YOU'RE RIGHT, YOU AND
DR. KRUGMAN, THE RECOMMENDATION
TO REALLY GET THE WORD OUT ABOUT
THE PROGRAM IS SOMETHING ALL OF
INTEND TO DO.
>> THE AMERICAN SOCIETY OF
CLINICAL INVESTIGATION EVERY
YEAR IN APRIL IN CHICAGO AND
OVER THE YEARS THE NUMBER OF
EARLY STAGE AND TRAINEES AND
INVESTIGATORS THAT COME TO THE
MEETING HAS EXPANDED
DRAMATICALLY.
THEY MEET WITH THE MEDICAL
STUDENT RESEARCH GROUP AND THESE
ARE ALL INDIVIDUALS THAT ARE
HUNGRY FOR OPPORTUNITIES AND I
DON'T KNOW IF THERE'S SOME WAY
TO ADVERTISE THERE OR GIVE A
TALK THERE OR MAYBE YOU'VE
ALREADY DONE THAT.
I'M NOT SURE.
>> THE GOOD NEWS IN RESPONSE TO
THAT, THE LASKAR FOUNDATION IS
SPONSORING TWO OF THE SCHOLARS
TO ATTEND THAT MEETING AND SERVE
AS AMBASSADORS IN SOME OF THE
EVENTS.
WE HAVE TWO SCHOLARS THAT ARE
YPSA AWARDEES AND THESE ARE THE
TWO THAT ARE GOING TO BE GOING
AND PARTICIPATING IN THE
MENTORING EVENTS AND SERVING AS
AMBASSADORS AND HOPEFULLY THIS
WILL HELP GET THE WORD OUT.
>> IF THERE'S A BOOTH THERE TO
ADVERTISE -- I DON'T KNOW IF
THEY ALLOW THAT SO PEOPLE KNOW.
GREAT IDEA TO ATTEND THIS
MEETING AND IT'S A GOOD WAY TO
APPEAL TO THE PEOPLE WHO WOULD
BE INTERESTED IN THE PROGRAM.
THANK YOU.
>> LOTS OF OPPORTUNITIES TO
EXPLORE GETTING THE MESSAGE OUT.
KENT.
>> I'D LIKE TO FOLLOW UP TO A
QUESTION AND ANSWER.
I APPRECIATE DENTISTS AND NURSES
BUT DR. JOHNSON SUGGESTED
VETERINARIANS AND EVEN CLINICAL
VETERINARIANS CONDUCTING HUMAN
CLINICAL RESEARCH BE ALLOWED TO
PARTICIPATE AND WILL YOU INCLUDE
VETERINARIANS ELIGIBLE NOR
PROGRAM?
EXPANDING THE DIVERSITY OF THE
PROGRAM?
>> AT THE CURRENT TIME,
VETERINARIANS ARE NOT ELIGIBLE.
WE CERTAINLY HAVE VETERINARIAN
RESEARCHERS WITHIN THE
INTRAMURAL PROGRAM.
WE'D HAVE TO SEE IF THAT'S A
POSSIBILITY.
>> THERE'S A NUMBER OF
VETERINARIANS CONDUCTING HUMAN
RESEARCH OBVIOUSLY THEY DON'T
HAVE A HUMAN PRACTICE BUT ARE
QUITE VALUABLE IN RESEARCH AND
I'LL GO SO FAR AS VETERINARY
CLINICIANS IS A TRIPLE THREAT
ALSO Ph.D. BECAUSE THEY'RE
TRAINED IN SCIENCE AND TRAINED
IN CLINICAL SCIENCES AND COULD
VERY MUCH EXPAND THE DIVERSITY
OF THE PROGRAM AND MAKE IT MORE
SUCCESSFUL.
THANK YOU FOR LOOKING INTO IT.
>> VETERINARIAN RESEARCHERS HAVE
A LOT TO OFF.
I AGREE WITH YOU.
>> LINDA AND THEN WE HAVE MONICA
AND JEAN.
>> ABOUT THE ADVERTISEMENT, I
WAS WONDERING WHY NOT
ADVERTISING IN A MAJOR MEDICAL
JOURNAL.
WE HAVE SCIENCE AND THAT'S IN
THE MAJOR MEDICAL JOURNAL WHEN
YOU LOOK FOR APPLICANTS BEFORE
THE DEADLINE AND SO FORTH THAT'S
ONE SUGGESTION AND A SECOND
SUGGESTION IN A CLINICAL
POPULATION AT THE MEDICAL
CENTER, THERE'S SO MANY
HOSPITALS IN THE WASHINGTON,
D.C. AREA HAVE PATIENTS THAT
WOULD HAVE TRAINING AND EVEN DO
CLINICAL TRIALS AND PROJECTS
OVER THERE.
THAT'S DIRECTLY ACROSS THE
STREET FROM NIH AND NOW PART OF
THE JOHNS HOPKINS HOSPITAL NOW.
>> WE ADVERTISE IN JAMA AND THE
NEW ENGLAND JOURNAL.
>> I GET A LISTING OF EVERY KO8
AWARDEE AND SEVERAL OTHERS AND
SEND AN E-MAIL FOR THE FLYER OF
THE PROGRAM ABOUT 2000 PEOPLE.
I ALSO GET A LIST ALL 20,000
INDIVIDUALS WITH AN R AWARD WHO
ARE DESIGNATED CLINICAL AND SEND
THEM SOMETHING ALSO.
I DON'T KNOW HOW MUCH THAT
FILTERS DOWN BUT AT LEAST I SEND
THAT TO THEM.
AND CONTACT SOCIETIES AND ONE
THING I DID IN THE PAST IS WE'D
GO ON AND FOR ABOUT 20 MEDICAL
SCHOOLS WE WOULD TRACK DOWN THE
LIST OF EVERY ADMINISTRATOR OF
THE TRAINING PROGRAM AND SINCE
WE CAN DISTINGUISH BETWEEN WHAT
ARE PURELY CLINICAL AND WHAT ARE
MORE ADVANCED IN RESEARCH WE GET
EVERY ONE OF THEM AND SEND
MESSAGES TO THEM ALSO.
I THINK IT'S BEEN A SOURCE OF
FRUSTRATION THE WORD HAS NOT
GOTTEN OUT MORE AND WELCOME ALL
THE SUGGESTIONS FROM THINGS WE
CAN DO TO DO THAT.
>> IS IT BECAUSE THE SALARY
GRADIENT IS SO HUGE?
IS THERE A HUGE DISCREPANCY
THEY'RE NOT INTERESTED?
>> WHILE TO THE NIH HAS A BROAD
PORTFOLIO WE DON'T DO EVERY
DISEASE AND EACH INSTITUTE HAS
ITS RESEARCH AREA AND FOCUSES.
WE DON'T HAVE THE BREADTH OF
WHAT MAY BE ORDINARY OR TERTIARY
CARE CENTER.
IT GOES HAND IN HAND WITH THE
CLINICAL VOLUME DO I WANT TO
POINT OUT ONE THING, ALL OUR
LASKAR SCHOLARS ARE P.I.s OR
OVERSEE A NUMBER OF PROTOCOLS.
ALL HUMAN SUBJECT PROTOCOLS AS
WELL AS ANIMAL PROTOCOLS.
FOR THOSE CONDUCTING HUMAN
SUBJECT RESEARCH KNOW THERE'S
QUITE A SIGNIFICANT AMOUNT OF
EFFORT AND TIME IT TAKES TO RUN
A CLINICAL TRIAL TO RUN NATURAL
HISTORY THE FEEDER PROTOCOL TO
THE AND TO RUN A CLINICAL TRIAL
AND HAVE A TENURE TRACKER RUN A
CLINICAL TRIAL WE'VE SEEN THEM.
IT'S A TREMENDOUS AMOUNT OF WORK
WE HAVE A LARGE MAJORITY OF
SCHOLARS VERY ACTIVE AT THE
CLINICAL CENTER OPTIMIZING AND
UTILIZING ALL THE RESOURCES THAT
ARE AVAILABLE AT THE CLINICAL
CENTER WHICH IS WHAT WE WANT
THEM TO DO.
WE WANT THEM TO REALLY TRY RISKY
HUMAN SUBJECT RESEARCH WITH
CLINICAL TRIALS AND WITH THE
UNDERSTANDING THAT THEY'RE GOING
TO IMPLEMENT THERAPEUTICS AND
CURES WHILE IT SOUNDS LIKE SOME
MAY WANT MORE CLINICAL VOLUME, I
CAN ASSURE YOU A LOT OF THE
LASKAR SCHOLARS ARE INCREDIBLY
ACTIVE IN THE CLINICAL CENTER
SEEING PATIENT AND MANAGING THE
TRIALS AS WELL AS OBSERVATIONAL
STUDIES.
>> DO YOU THINK THE SALARY MAY
BE A MAJOR DETERRENT FOR
APPLICANTS?
>> THE SALARY HAS COME UP.
WE HAVE LOOKED AT THAT AND
HOPING TO USE THE AAMC
BENCHMARK.
WHILE THE SALARY HAS DETERRED A
FEW AND MAYBE THE REASONS WHY A
FEW HAVE CONSIDERED OUTSIDE
PROGRAMS, I THINK THEY ALSO
RECOGNIZE THERE IS SOME BALANCE
HERE.
WE HAVE TIME TO DO RESEARCH AND
THE INDIVIDUALS ARE NOT TASKED
TO GENERATE REVENUE.
WE'VE HAD THESE DISCUSSIONS WITH
THEM AND YOU TALK ABOUT THE
PLUSES OF HAVING TO BE HERE AND
NOT HAVING TO GENERATE REVENUE
COMES UP AS A STRENGTH IN
CONDUCTING RESEARCH WITHOUT
ADDITIONAL BURDENS WE ALL FACE
IN THE ACADEMIC MEDICAL CENTER.
>> A PROFESSOR WITH THE FIRST
YEAR OUT OF SCHOLARSHIP GETTING
$350,000 A YEAR AND WITH A K
AWARD HAVE 80% PROTECTED
RESEARCH TIME.
WITH THAT KIND OF
DIFFERENTIATION IN SALARY IT'S
HARD TO TELL THEM GET HALF OF
THAT AND GOOD TO NIH.
>> THERE'S A DISCREPANCY BUT WE
DO PRETTY WELL WITH WHAT WE CALL
HIGH SCARCITY SPECIALTIES AND
RADIOLOGY IS ONE OF THEM.
THERE'S AREAS WHERE IT'S HARD TO
FIND RESEARCH INTENSIVE
INVESTIGATORS.
IT IS POSSIBLE THERE ARE SOME
THAT ARE DETERRED BY THE SALARY.
IT'S HARD TO KNOW BECAUSE THOSE
ARE THE PEOPLE THAT WE DON'T SEE
BECAUSE THEY DON'T APPLY.
THE FLIP SIDE IS THE PEOPLE WE
DO GET ARE SO PASSIONATE ABOUT
DEVOTING THE BULK OF THEIR TIME
TO DOING RESEARCH AND DEVELOPING
THEIR RESEARCH SKILLS THE SALARY
THAT IS REASONABLY COMPETITIVE
DOESN'T COME UP AS AN ISSUE.
>> TURN IT OVER TO MONICA TO
WEIGH IN WITH HER COMMENT OR
QUESTION AND DEAN, MAKE YOURS
THE LAST ONE.
>> THANK YOU.
I KNOW ABOUT THIS
>> ONE THING I WOULD SAY IS THAT
MENTORING WAS AN IMPORTANT PART
OF ANY TRAINING PROGRAM.
I THINK IT'S NOT JUST MENTORING
OF THE INDIVIDUALS BEING TRAINED
MENTORING OF THE MENTORS BECOME
HIGHLY SUCCESSFUL MENTORS AND WE
HAVE A PROGRAM AT UCSF TO MENTOR
IN THE MORE HIGHLY SUCCESSFUL
MENTORS AND TOOLS AN TECHNIQUES
ADDRESSING DIVERSITY AND
MENTORSHIP.
I WOULD ENCOURAGE GOING FORTH
SOME DEVELOPMENT OF MENTORING
TRAINING FOR THE MENTORING IN
THE PROGRAM AND WE ALWAYS TALK
ABOUT THE MENTEES GETTING
TRAINING.
>> THANK YOU FOR THAT COMMENT.
>> THE DIRECTOR OF OUR FACULTY
DEVELOPMENT OFFICE IS WORKING ON
A NUMBER OF WORKSHOPS TO HELP US
IDENTIFY WAYS TO IMPROVE
MENTORS, WAYS TO IMPROVE OUR
EDUCATORS AND EXACTLY AS YOU
POINTED OUT MAKING SURE THEY
HAVE EQUIPMENT TO BE THE BEST
MENTORS FOR THE NEXT CADRE OF
PHYSICIAN SCIENTISTS.
THANKS FOR THAT COMMENT.
>> GENE, YOU'LL CLOSE US OUT
HERE.
>> THIS AQUICK -- A QUICK ONE.
IS THE AVERAGE AGE 41?
>> YES.
>> GOOD, I DIDN'T READ IT WRONG.
I WAS WONDERING ABOUT AND THE
WORK-LIFE BALANCE MAKES SENSE AT
41 AND ALL THE THINGS HAPPENING
IN THEIR LIVES AND THEIR JOBS
ARE REALLY QUITE DEEP TOO.
I'M WONDERING WHY THEY MAY COME
IN THIS LATE AND WONDERING HOW
WE CAN MAKE THE AGE RANGE MAKE
IN ANOTHER DIRECTION LIKE BRING
DOWN THE AGE RANGE BECAUSE BY
THE TIME THEY LEAVE YOU THEY'RE
GETTING THEIR FIRST GRANT IN
THEIR MID 40s AND BY THE TIME
THEY DO ALL THE THINGS THEY NEED
TO DO IT FEELS LIKE WORK-LIFE
BALANCE MAKES A LOT OF SENSE.
THEY'RE PROBABLY TRYING TO DO A
LOT OF THINGS AT THE SAME TIME.
I WONDER ABOUT THE AGE.
NOT ABOUT AGEISM I'M NOT YOUNG
BUT HOW WE CAN MAKE SURE THE AGE
IS AT A PLACE TO SUPPORT A
CAREER JOURNEY THAT THEY WOULD
MAKE THAT CHOICE BECAUSE THEY
PROBABLY WOULDN'T MAKE A CHOICE
AT 41 TO MOVE SOME PLACE TO COME
BACK.
HOW CAN WE DO THAT AND SECOND
THING I REALLY WANT TO HAVE A
SENSE OF, ARE THEY TIED TO THE
CTSs BACK IN THEIR HOME
ORGANIZATIONS?
DO WE HAVE AN OPPORTUNITY FOR
THE LASKAR AND CTSAs TO BE
WORKING TOGETHER SINCE YOUR
MISSION SEEMS VERY SIMILAR?
>> TO YOUR LAST QUESTION, AS THE
PROGRAM IS SET UP, INDIVIDUALS
HAVE TO TERMINATE EMPLOYMENT AT
THEIR PREVIOUS PLACE TO BECOME
FEDERAL EMPLOYEES.
IN MANY CASES, THEY CAN MAINTAIN
AN ADJUNCT APPOINTMENT FOR THOSE
WHO ARE ASSISTANT PROFESSORS AND
A NUMBER HAVE AND OBTAIN ADJUNCT
APPOINTMENT WITH THE AREA
HOSPITALS BUT WHAT I THINK WOULD
HELP THE PROGRAM BUT WE CAN'T DO
IT WOULD BE IN SOME CASES IF THE
ARRANGEMENT WAS SOMEONE COMES,
WORKS AT THE INTRAMURAL PROGRAM
FOR FIVE YEARS AND THEN THE
EXPECTATION IS THEY GO BACK TO
THEIR PREVIOUS PLACE.
SOME OF THE LEADERSHIP SOME
MEDICAL CENTERS MAY BE MORE
WILLING TO PROMOTE SENDING THEIR
TOP CANDIDATES INTO OUR PROGRAM
IF THEY KNEW THEY WERE COMING
BACK RATHER THAN HAVING A SENSE
THAT WE MIGHT NEVER SEE THEM
AGAIN.
>> YOU KNOW THAT'S A MAJOR
BARRIER RIGHT?
AS DEAN I'M NOT GOING TO ASK ONE
OF MY FACULTY TO COME TO NIH FOR
FOUR OR FIVE YEARS AND LOSE THEM
COMPLETELY.
I WILL HELP BY THINKING THEY'D
GO TO NIH THEY'D LEARN THE
SKILLS AND YOU'LL HAVE A GREAT
PROGRAM.
I LOVE WHAT YOU DESCRIBED AND
POSSIBLY COME BACK.
OBVIOUSLY, PEOPLE COULD MAKE
CHANGES ALONG THE WAY BUT I
WOULD SEE THAT AS A GREAT
CHALLENGE TO INVITE THEM TO
LEAVE THEIR INSTITUTION ALL
TOGETHER AND COME TO NIH
INDEFINITELY.
I KNOW YOU SAID WE CAN'T DO THAT
BUT I DON'T LIKE THE WORD CAN'T
AND LOOKING FOR A WAY TO DO THAT
IS WAY FOR PEOPLE TO GET HELP IN
THE PROGRAM AND RETURN TO THEIR
INSTITUTIONS AND COULD BE A
CIRCLE THAT CONTINUES TO FEED
ITSELF.
>> WE'VE BEEN TOLD IT'S A LEGAL
REQUIREMENT BUT IT'S WORK
SITTING DOWN WITH OUR COLLEAGUES
IN THE OFFICE OF EXTRAMURAL
RESEARCH AND SEEING WHAT OPTIONS
WE MIGHT HAVE TO TRY TO DO THAT.
IF WE CAN GET ALLIES AMONG THE
LEADERSHIP IN THE CTSAs, AT
MEDICAL CENTERS, I THINK THAT
COULD HELP SEND THINGS A LONG
WAY.
ANOTHER POTENTIAL STUMBLING
BLOCK FOR GETTING APPLICANTS IS
CANDIDATES NEED TO APPLY THROUGH
THE PROCEDURE IN GENERAL MEANS
THEY HAVE TO GO TO THEIR GRANTS
AND CONTRACTS OFFICE AND SUBMIT
THROUGH THAT AND YOU CAN IMAGINE
THAT WOULD BE A DISINCENTIVE FOR
ANYONE WHO HAS STARTED AS AN
ASSISTANT PROCESS TO LET IT BE
KNOWN AND THOSE IN INSTRUCTOR
POSITIONS DO NOT NECESSARILY
HAVE THAT BARRIER BUT IT'S A
BARRIER TO THOSE WHO MAY BE
FURTHER ALONG AND WOULD THINK
TWICE ABOUT DOING IT.
>> FOR A YOUNG FACULTY MEMBER, I
DON'T KNOW MAYBE IT'S JUST ME, I
FEEL IT'S MORE THAN A BARRIER.
YOU'RE ASKING THEM TO PUT THEIR
CAREERS AT RISK I WOULD SAY.
I WAS PROVOST OF A MEDICAL
SCHOOL AND HAVE A HUGE CTSA AND
HAVE MANY FACULTY AND IF I THINK
A FACULTY IS LOOKING TO LEAVE IS
NOT A WAY FOR KNOW THINK ABOUT
THAT PERSON AND MY LOYALTY TO
THEM.
MAYBE I'M NOT DEVELOPED WELL
ENOUGH.
>> WE HEARD EXACTLY THE SAME
THING FROM THE PEOPLE WHO CAME
FROM OUR BLUE RIBBON PANEL TO
REVIEW US, ALL OF WHOM WERE
EXTRAMURAL ACADEMIC LEADERS.
THE CHALLENGE THAT WE HAVE AND
IT LONG PRECEDES MY TENURE AND
PROBABLY THOSE OF MY COLLEAGUES
AT NIH, REAL AND PERCEIVED FIRE
WALL BETWEEN INTRAMURAL AND
MONEY AND THE MOTION YOU WOULD
USE INTRAMURAL MONEY TO FUND
SOMEBODY WHO IS THEN GOING TO GO
EXTRAMURALLY AND HOW MUCH OF
THAT IS REAL LEGAL BARRIER AND
HOW MUCH HAS BEEN THE
INTERPRETATION OF WHAT MEANS TO
HAVE TWO SEPARATE STREAMS OF
MONEY IS SOMETHING I THINK WE
NEED TO EXPLORE BECAUSE IT'S A
WONDERFUL , WONDERFUL POINT.
>> THANK YOU ALL FOR THIS
HELPFUL DISCUSSION.
YOU RAISED SOME FABULOUS POINTS
ON HOW WE CAN THINK ABOUT
BUILDING PARTNERSHIPS,
ADDRESSING SOME OF THESE
CHALLENGES AND HOPING TO
INCREASE THE VISIBILITY OF THIS
PROGRAM.
WITH THAT I'M GOING TO CALL TO
FRANCESSCA TO SEE IF WE WANT TO
CALL FOR A VOTE UNLESS THERE ARE
ANY ADDITIONAL QUESTIONS FROM
THE COUNCIL.
>> THERE WERE A COUPLE MORE
COMMENTS IN THE CHAT BUT I THINK
IT'S ADDING TO THE VOLUME OF
INFORMATION THAT WAS PROVIDED
AND QUESTIONS ASKED.
VERY HELPFUL TO THE PROGRAM WITH
OUTREACH AND OF COURSE WE'RE
ENGAGED IN INFRASTRUCTURE AND
IT'S ALWAYS HIGH ON THE PRIORITY
BECAUSE IT'S NOT COMMENTED ON
AND I'LL CALL FOR A VOTE FOR THE
CONCEPT.
MAY I HAVE A MOTION FOR APPROVAL
OF THE CONCEPT CLEARANCE
REISSUANCE ENTITLED NIH LASKAR
CLINICAL RESEARCH SCHOLARS
PROGRAM.
I SEE SO MOVED.
I SEE SO SECONDED.
THANK YOU VERY MUCH.
I DON'T THINK I HAVE TO ASK FOR
IT TO PASS.
IS THERE ADDITIONAL DISCUSSION
AT THIS POINT?
ALL RIGHT, I SEE NO DISCUSSANTS
OR HANDS.
>> THANK YOU.
THE POLLS SHOULD AUTOMATICALLY
APPEAR WHEN LAUNCHED AND THE
POLL WILL BE CLOSED AFTER 30
SECONDS AND THE POLL IS STARTING
NOW AND ONLY COUNCIL MEMBERS CAN
VOTE.
YOU HAVE ABOUT 15 SECONDS
REMAINING.
PLEASE REMEMBER TO HIT SELECT
AFTER YOU HAVE SELECT YOUR VOTE.
THE POLL IS NOW CLOSING.
I'LL NOW SHARE IS THE RESULT.
THE MOTION AS STATE HAS PASSED.
THANK YOU.
>> THANK YOU.
BACK TO TARA.
>> GREAT.
WELL, THANK YOU SO MUCH TO NINA
AND I APPRECIATE YOUR DISCUSSION
OF THIS.
THE NEXT THING ON OUR AGENDA IS
A LUNCH BREAK.
SO WE CAN DO ONE OF TWO THINGS
BECAUSE WE ARE 10 MINUTES INTO
THAT LUNCH BREAK ALREADY, WE CAN
KEEP ON TIME AND PUSH TO COME
BACK AT 1:45 TO WE CAN CONTINUE
TO TRY TO AIM TO END ON TIME OR
EARLY TODAY OR WE CAN COME BACK
A COUPLE MINUTES LATER.
I'M GOING TO OPEN IT UP TO THE
COUNCIL TO SEE IF YOU HAVE A
PREFERENCE.
LONGER BREAK, SHORTER BREAK?
I'M SEEING SHRUGS.
KEVIN.
>> I WAS GOING TO HAVE A BREAK
WE ALSO HAVE A BREAK AT 2:30 AND
WONDERING IF WE CAN A LUNCH
BREAK AND SHORTEN THAT BREAK
INSTEAD.
>> I THINK THAT'S A GREAT
PROPOSAL.
ALL RIGHT, WHY DON'T WE PLAN TO
COME BACK AT 1:45 AND IF WE NEED
THE ADDITIONAL TIME WE'LL
SHORTEN THE BREAK AT 2:30.
>> I THINK 1:45 IS WHEN WE'RE
SUPPOSED TO COME BACK DO YOU
MEAN A LITTLE BIT LATER THAN
THAT LIKE 1:52?
>> SURE.
WE CAN COME BACK AT 1:52.
HOW ABOUT WE SAY 1:55 AND WE'LL
SHORTEN THE BREAK AT 2:30 AND
CALL THAT THE PLAN FOR THE DAY.
ALL RIGHT.
WE'LL SEE YOU ALL BACK AT 1:55.
>> ALL RIGHT.
EVERYONE, WELCOME BACK FROM OUR
SHIFTED LUNCH.
OUR NEXT PRESENTATION WHICH ALSO
I BELIEVE IS OUR PENULTIMATE
PRESENTATION IS GOING TO COME
FROM DR. SUSAN GREGURICK OUR
ASSOCIATE DIRECTOR FOR DATA
SCIENCE AND THE DIRECTOR OF THE
OFFICE OF DATA SCIENCE STRATEGY.
SHE'S GOING TO PRESENT ON A
PROPOSAL OF A WORKING GROUP OF
THE COUNCIL OF COUNCILS TO
EVALUATE THE NIH GENERAL
REPOSITORY ECO SYSTEM
INITIATIVE.
SO SUSAN, I'LL TURN IT OVER TO
YOU.
>> THIS, DR. SCHWETZ AND IF BY
CHANCE I FREEZE, MY COLLEAGUE
WILL CONTINUE THE PRESENTATION
IN A SEAMLESS WAY BUT YOU KNOW
HOW IT IS WHEN YOU PHONE IN
REMOTELY.
OR PROPOSE THE CHARGE NOR
GENERA
GENERALIST REPOSITORY ECO SYSTEM
AND OUR SECOND OBJECTIVE TO
MODERNIZE OUR DATA ECO SYSTEM IS
AN IMPORTANT GOAL FOR NIH.
KEY ELEMENTS INCLUDE MODERNIZING
THE DATA REPOSITORIES TO ADOPT
FAIR AND JUST PRINCIPLES, TO
IMPROVE THE EFFICIENCY AND
SUSTAINABILITY AND SECURITY AND
IDENTIFY ACCESS PROCESSES FOR
DATA REPOSITORIES WHICH HOLD
PATIENT-DERIVED DATA AND TALK
ABOUT A PROGRAM TODAY.
THIS TELLS YOU MORE SPECIFICS
ABOUT THE WORK THAT FALLS UNDER
THE SPECIFIC GOAL AND THIS
INCLUDES ADMINISTRATIVE SLUMENTS
FOR NIH ALL RIGHT SUPPORTED DATA
AND FUNDED REPOSITORIES IN THE
INTERIM PROGRAM OR EXTRAMURAL
FUNDED PROGRAM TO ADDRESS FAIR
AND JUST PRINCIPLES.
IN ADDITION, WE ALSO HAVE UNIQUE
FUNDING OPPORTUNITIES TO SUPPORT
NEW AND WELL-ESTABLISHED DATA
REPOSITORIES THROUGH A FUNDED
PROGRAM WITH AN EMPHASIS PANEL
WHERE THE REVIEW IS CONDUCTED BY
CSR AND THIS SUPPORTS COMMUNITY
REPOSITORIES AND KNOWLEDGE BASES
THAT FIT WITHIN SPECIFIC
MISSIONS OR ACROSS I.C. MISSIONS
AND SUPPORT THEIR RESEARCH
COMMUNITIES MANY USE CASES FOR
DATA AND SHARING MODALITIES AND
THERE'S A PERFECT EXAMPLE OF A
COMPREHENSIVE AND FREELY
ACCESSIBLE RESOURCE OF
FUNCTIONAL INFORMATION AND I'LL
TALK ABOUT THE GENERAL
INITIATIVE.
THE NEXT SLIDE IS A HISTORY ON
HOW WE GOT TO THIS INITIATIVE.
AS OF A REMINDER IN CASE YOU
DON'T KNOW, GENERAL REPOSITORIES
ACCEPTED BUT DATA REGARDLESS OF
THE DATA TYPE, PERFORMANCE,
CONTENT OR THE DISCIPLINARY
FOCUS.
SO THIS SLIDE DESCRIBES THE
BACKGROUND OF THE WORK WE DID AT
NIH TO THE MISSION INCLUDING A
PILOT WHICH WAS TO ASSESS THE
ADOPTION OF GENERAL REPOSITORY
TO SUPPORT OUR NIH DATA SHARING
POLICY AND THE PILOT WHICH WAS A
15-MONTH PILOT WITH ALL OF OUR
INSTITUTES, CENTERS AND OFFICES.
AT THE SAME TIME, WE ALSO HELD A
COMMUNITY WORKSHOP TO EXPLORE
THE ROLE OF GENERAL REPOSITORIES
AND DATA SHARING.
AN REAL IMPORTANT CONCEPT WAS
THE CONCEPT CAN OF COMPETITION
IN A REPOSITORY COMMUNITY
INCLUDING PARTICIPANTS AND
ACADEMIA AND GOVERNMENT AND CAN
BE APPLIES TO THE CONCEPT OF
ACTIVITIES THAT ARE DONE
TOGETHER AND WHERE THERE'S NEED
FOR CORROBORATION AND
COMPETITION.
IT DOESN'T NEGATE COMPETITION IN
COMPETITIVE REPOSITORIES BUT
THERE'S ELEMENTS WE CAN WORK
WITH IN A COORDINATION FASHION.
WE COMMISSIONED A REPORT TO LOOK
AT THE REPOSITORY LANDSCAPE OF
INDEPENDENT ASSESSMENT SO WE
WOULD UNDERSTAND AND HELP US
IDENTIFY THE OPPORTUNITIES IN
THE GENERALIST REPOSITORIES
INITIATIVE AS WELL AS SOME OF
THE CHALLENGES.
SO WE USED THE THREE ELEMENTS
THAT WENT INTO DEVELOPING THE
PROGRAM AND IN THE NEXT SLIDE IT
WAS ALMOST EXACTLY TWO YEARS AGO
TODAY, JANUARY 22, 2022, NIH
ISSUED THE AWARD TO SEVEN
GENERALIST REPOSITORY
ORGANIZATIONS LISTED AT THE
BOTTOM OF THE SLIDE.
THE PRIMARY MISSION OF THE
INITIATIVE IS TO ESTABLISH A
COMMON AND COHESIVE METRICS AND
SOCIAL STRUCTURES ACROSS THE
SEVEN REPOSITORIES ADOPTING THE
IDEA OF THE MODEL AND FACILITATE
RESEARCHERS ABILITY TO ADOPT
FAIR PRINCIPLES TO SHARE AND
REUSE DATA.
THESE ARE THE OVER ALL GOALS AND
I'LL DEEP DIVE A LITTLE BIT INTO
HOW THIS IS ENACTED THROUGH THE
TRANSACTIONAL AUTHORITY.
SO THESE ARE THE MAIN ACTIVITIES
WRITTEN INTO OUR OTHER
TRANSACTIONAL AWARD CONTRACTS.
AND THEY INCLUDE INCREASE USE OF
DATA SHARING ACROSS THE SEVEN
GENERALIST REPOSITORIES
INCLUDING THE COMMON METADATA
ELEMENT WHICH ARE CAPTURED AND
ALIGNED AND INCLUDING AWARDS AND
ENHANCING SEARCH AND
DISCOVERABILITY AND INCLUDES
PROVIDED OUTREACH ON FAIR
PRACTICES AND SOME WERE BEST
PRACTICES FOR DATA SHARING IN
GENERALIST REPOSITORIES AND
FINDING GENERALIST REPOSITORIES
AND WEBINARS AND WORKSHOP ON THE
FAIR PRINCIPLES AS WELL AS DATA
MANAGEMENT AND SHARING BEST
PRACTICES.
THERE'S ALSO A NUMBER OF
COMMUNITY ENGAGEMENT ACTIVITIES
THROUGH THE INITIATIVE INCLUDING
ENGAGING WITH LIBRARIANS,
ACADEMIC INSTITUTIONS AND
RESEARCHERS, WORKING WITH
COMMUNITIES INCLUDING METADATA
METRICS, PERSISTENT IDENTIFIER
PROVIDER AND PUBLISHERS AND THE
SERVICES AN INITIATIVE BOTH
FOCUSSED OF BRINGING COMPETITION
TO THE REPOSITORIES AND
ENHANCING THE IDEA OF FAIR
SHARING AND BEST PRACTICES.
SO THE NEXT SLIDE IMPACT OF THE
ACCOMPLISHMENTS IN THE PAST FEW
YEARS AND COMMON METAFIELDS
ACROSS THE INITIATIVE AND THIS
IS IN COLLABORATION WITH BATE
SITES AND A CAN PROVIDE THE LINK
IF YOU'D LIKE IT.
BUT I REALLY LIKE IS THIS IS
SOMETHING THAT CAN BE
ESTABLISHED IN THE DATA
REPOSITORIES BUT CAN WORK WITH
OUR FUNDED REPOSITORIES AND
KNOWLEDGE BASES BECAUSE IT LYINS
BIG DATA SITES AND THEY'RE
WORKING WITH MAKE DATA COUNT TO
CREATE THE SHARED METRICS FOR
UNDERSTANDING THE IMPACT OF
UNDERSTANDING AND REUSING DATA.
THIS INITIATIVE WILL END IN
FEBRUARY OF 2025.
SO WE'RE INTERESTED IN
UNDERSTANDING THE IMPACT OF SOME
OF THIS WORK ACCOMPLISHED BY THE
GRAY INITIATIVE.
TO THE NEXT SLIDE IS A SUMMARY
OF THE CHARGE AND ASKING THE
COUNCIL OF COUNCIL TO ASSESS OUR
PROJECT AND PROVIDE
RECOMMENDATIONS ON SUCCESS OF
THE INITIATIVE, WHAT IT WOULD
LOOK LIKE FROM YOUR UNIQUE
PERSPECTIVE AS A COMMUNITY OF
RESEARCHERS.
WITH THAT, IT'S A SHORT
PRESENTATION, IN CASE THERE'S
ANY QUESTIONS, I'D BE HAPPY TO
ADDRESS THEM AND THE LAST SLIDE
IS WHERE WE REQUEST A VOTE OF
THE COUNCIL OF COUNCILS ON THE
WORK GROUP FOR THE GENERALIST
REPOSITORY ECO SYSTEM
INITIATIVE.
>> RAPHAEL, STARTING WITH YOU.
>> WHEN I LOOK FOR PLACE FOR
DATA I USE THE WELL KNOWN ONES
YOU'RE COLLABORATING WITH.
WHAT I'M MISSING AND INFORMATION
I'M ASKING FOR IS WHAT DOES THIS
ADD TO EXISTING SUCH PLACES
WHERE YOU CAN ADD DATA TO?
>> ABSOLUTELY.
SO THIS ENHANCES EACH OF THE
GENERALIST REPOSITORIES.
WE WORK WITH DATAVERSE, MENDLI
AND ALL THE GENERALIST
REPOSITORIES ARE PART OF THIS
INITIATIVE.
WHAT WE'RE ADDING IS THE VALUE
OF CONSISTENCY OF CAPABILITIES
AND ENHANCE SUFFICIENCY.
WE'RE COLLECTING CONSISTENT
METADATA FOR ALL THE NIH FUNDED
AWARDEES THAT WILL ADD MAKE IT
EASIER FIND NIH-SUPPORTED DATA
AND MAKE IT EASIER FOR NIH TO
SHARE METRICS AND USE CASE FOR
TRAINING MATERIALS FOR THE LARGE
RESOURCE COMMUNITY SUPPORTED BY
NIH THAT NEEDS TO DEVELOP DATA
MANAGEMENT AND SHARING PLANS AS
PART OF THEIR APPLICATIONS TO
AWARDS TO NIH.
UNDERSTANDING HOW YOU MAKE YOUR
DATA, FAIR, ACCESSIBLE AND
INTEROPERABLE AND SUPPORT THAT
PLAN YOU'RE DEVELOPING IS AN
IMPORTANT PART OF OUR MISSION
IMPLEMENTATION.
THERE'S ALSO A NUMBER OF
COMMUNITY INITIATIVES AND
RESEARCH
RESEARC
RESEARCHERS AND THERE'S A LOT OF
WORK THIS INITIATIVE BRINGS FROM
THE SEVEN GENERALIST
REPOSITORIES IN A CONSISTENT,
COHERENT WAY AND WE'VE HAD A
NUMBER OF GREAT SUCCESSES IN THE
PAST TWO YEARS AND WE NEED TO
UNDERSTAND ARE THESE ADDING
VALUE TO THE COMMUNITY AND
LOOKING FORWARD, WHERE WOULD
THIS INITIATIVE NEED TO GO TO
MAKE A SUBSTANTIAL IMPACT IN THE
FUTURE AS WE BELIEVE IT'S MADE
IN THE PAST THREE YEARS.
WE'RE ADDING VALUE TO THE
GENERALIST REPOSITORIES BUT
WE'RE NOT TAKING AWAY FROM
ANYTHING THEY'RE DOING
INDIVIDUALLY.
THEY HAVE A COMPETITION
COMPONENT AS WELL AND WORK IN
THE MODEL OF COMPETITION AND ADD
VALUE WHEN WE CAN COLLABORATE
AND ALLOW COMPETITION WHERE IT
MAKES SENSE TO HAVE COMPETITION?
>> THAT HELPS, THANK YOU.
A FOLLOW UP COMMENT REAL QUICK,
I THINK IT'S GOING IN THE RIGHT
DIRECTION FOR REWARDING PEOPLE
FOR MAKING THEIR DATA PUBLIC.
THE COMMENT I HAVE IS CURRENTLY
THERE'S NOT TOO MANY INCENTIVES
FOR MAKING DATA PUBLIC.
YOU HAVE THE OPPOSITE SOMETIMES
WHERE THEY CAN KEEP PUBLISHING
ON THE SAME DATA SET.
YOU SEE THAT WITH BIG COHORT
STUDIES.
IT WOULD BE GREAT IF NIH STARTS
THINKING MORE ABOUT HOW WE CAN
GET REWARDED FOR OTHERS
DOWNLOADING AND USING OUR DATA.
WHEN YOU PUBLISH IT YOU GET
AWARDED.
THAT'S AN INCENTIVE NOT TO MAKE
DATA PUBLIC.
IT WOULD BE GREAT IF YOU GET
JUST THE SAME AWARDS FOR HAVING
PEOPLE DOWNLOAD YOUR DATA AND
NOT INCLUDE YOU AS AN AUTHOR,
NECESSARILY.
>> ABSOLUTELY.
I THINK I GLOSSED OVER THIS ON
SLIDE SEVEN BUT ONE OF THE
THINGS THE GRAY INITIATIVE IS
DOING AND MAY BE A PILOT FOR NIH
IS WORKING IN PARTNERSHIP WITH
OUR PARTNER ON DATA SITE TO
PROVIDE THAT INCENTIVE BOTH FOR
INSTITUTIONS TO SUPPORT THEIR
RESEARCHERS TO SHARE DATA BUT
ALSO SPECIFICALLY BY CONNECTING
DATA WITH THE RESEARCHER TO
ENABLE RESEARCHERS TO GET CREDIT
FOR THE SHARING OF THEIR DATA
AND THIS COULD BE SOMETHING THAT
THE WORK GROUP OF THE COUNCIL OF
COUNCILS MAY WANT TO ELABORATE
FURTHER ON AND REALLY
INVESTIGATE THE INITIATIVE DOING
ENOUGH WORK IN THIS AREA.
IS THERE MORE WORK WE CAN USING
THROUGH THIS INITIATIVE AND
POTENTIALLY WITH OTHER
INITIATIVES.
THIS IS CERTAINLY SOMETHING OF
INTEREST TO NIH AND THE POLICY
OF DATA MANAGEMENT AND DATA
SHARING IS TO REALLY CHANGE THE
CULTURE WITHIN THE RESEARCH
COMMUNITY OF SHARING AND REUSING
DATA IN A VERY COMPATIBLE WAY
ALIGNED WITH WHAT IS DONE NOW
WITH PUBLICATIONS.
I WELCOME THAT IDEA VERY MUCH.
>> ANY OTHER QUESTIONS.
I'LL NOTE RICK PUT IN THE CHAT
ABOUT THE ORDINANCE OF
FEDERATING REPOSITORIES OF THE
APPROPRIATE METADATA AND OTHER
STANDARDS AND INCENTIVES FOR
DATA CREATION AND OPEN STORAGE
AS WELL.
>> THAT COMMENT IS SOMETHING
WE'VE HEARD DR. BERTAGNOLLI TALK
ABOUT AND OUR NIH REPOSITORY IS
AN IMPORTANT GOAL AND A GOAL SHE
SEES NLM UNIQUELY POISED TO TAKE
IN AND WE HAVE EVOLVING
CAPABILITIES IN THE SPACE AND I
THINK THE WORKING GROUP MAY
POSITION NIH IN THAT WAY AS WELL
SO THAT IS ALSO ANOTHER REALLY
IMPORTANT POINT TO BRING UP.
>> KEN, WE'LL HAVE YOU MAYBE BE
THE LAST COMMENT OR QUESTION.
>> I'M VERY SUPPORTIVE.
MY ONLY COMMENT IS I THINK NIH
IS ALREADY STRUGGLING WITH THE
FINANCIAL MANAGEMENT AND
SUSTAINABLE OF THE EXISTING
DATABASES.
IT'S DIFFICULT TO GET THE I.C.s
TO ASSUME OWNERSHIP AND
LONG-TERM SUSTAINABILITY.
THAT HOPEFULLY WILL BE PART OF
THE WORKING GROUP'S CHARGE TO
LOOK AT THE FINANCIAL MODEL FOR
CONTINUING TO SUPPORT THEM.
>> THAT IS AREALLY GOOD POINT
AND IT'S BEEN A SERIOUS
DISCUSSION AT NIH AND I WELCOME
THOSE COMMENTS.
AS WELL, SUSTAINABILITY OF NIH
BIOMEDICAL DATA ASSETS IS ON OUR
AGENDA.
>> I'M GOING TO ASK, WE DON'T
NEED A VOTE FOR A SETTING OF THE
WORKING GROUP BUT I WANT TO TAKE
A TEMPERATURE CHECK, I GUESS, OF
THE COMMITTEE.
ARE THERE ANY CONCERNS OR
OBJECTIONS TO SETTING UP ONE OF
THESE WORKING GROUPS OR A
WORKING GROUP ON THIS TOPIC?
I'M NOT SEEING ANY THUMBS DOWN
OR ANYONE RAISING THEIR HANDS TO
COMMENT AGAINST IT.
IN FACT SEEING THE OPPOSITE.
SO WITH THAT, I THINK WE'LL MOVE
FORWARD WITH THE WORKING GROUP
AND ASK THERE'S ANY FOLKS WHO
ARE INTERESTED IN PARTICIPATING
IN THIS GROUP TO LET SOMEONE ON
THE NIH TEAM KNOW EITHER SUSAN,
MYSELF, FRANCESSCA, ROBIN AND
WE'LL MAKE SURE TO INCLUDE YOU.
GREAT, THANK YOU SO MUCH, SUSAN.
WE'LL HEAR MORE IN THE WORKING
GROUP.
>> THANK YOU.
>> OKAY.
I WAS IN A LITTLE TOO AMBITIOUS
WITH THINKING OUR LAST
PRESENTATION WAS THE SECOND TO
LAST PRESENTATION FOR THE DAY
BUT THIS NEXT ONE I PROMISE
ACTUALLY IS THE SECOND TO LAST
PRESENTATION FOR TODAY.
IT'S GOING TO BE A REPORT OUT ON
THE COMMON FUND PROJECT ENTITLED
ILLUMINATING THE DRUGGABLE
GENOME AND DR. KARLIE SHARMA
WILL PRESENT ON THIS FOR US
TODAY.
I'LL TURN IT OVER TO KARLIE NOW.
>> THANK YOU FOR THE INTRO.
CAN YOU HEAR ME OKAY?
>> YES.
>> I HAVE BEEN OVERSEEING THE
PROGRAM FOR THE IMPLEMENTATION
PHASE ASPECT AND INVOLVED IN THE
LAST SEVEN YEARS AND STARTING TO
GET INTO THE SUNSETTING.
I'M GOING TO PROVIDE AN OVERVIEW
OF WHERE WE STAND IN TERMS OF
THE PROGRAM AND SOME OF THE
SUCCESSES WE'VE HAD OUT OF THE
PROGRAM.
SO COULD YOU GO TO THE NEXT
SLIDE.
SO QUICKLY LET ME PROVIDE WITH A
DEFINITION OF WHAT WE CONSIDER
THE DRUGGABLE GENOME.
SO THIS IS THE SUBSET OF THE
HUMAN GENOME THAT EXPRESSES
PROTEINS POTENTIALLY ABLE TO
BIND COMPOUNDS AND THAT'S ABOUT
3,000 DISEASE-MODIFYING GENES
AND UPDATED TO 4500 BUT THERE'S
ABOUT 4500 GENES IN THE
DRUGGABLE GENOME AND WHERE THE
TWO OVERLAP IS WHERE WE SEE MOST
OF OUR DRUG TARGETS.
AND WHILE THERE ARE A HUGE
NUMBER OF THE DRUGGABLE GENES,
WE ONLY HAVE EXISTING CLINICAL
PHARMACOPEIA FOR A FEW HUNDRED.
THAT LEAVES A LOT OF THE BIOLOGY
THAT HASN'T BEEN EXPLORED.
ONE GOAL WAS TO CATALYZE
RESEARCH TO IMPROVE OUR
UNDERSTANDING OF THE PROPERTIES
AND FUNCTIONS OF PROTEINS
CURRENTLY NOT WELL STUDIED
WITHIN COMMONLY DRUG TARGETED
PROTEIN
PROTEIN FAMILIES AND IT'S A
COMMON FUND PROGRAM BROUGHT UP
IN APPLICABILITY TO SEVERAL
I.C.s AND MEANT TO SERVE AS A
MODEL TO DEMONSTRATE HOW TO
ILLUMINATE THE PROTEIN FAMILIES
AND THERE WERE STILL A LOT OF
VERY SEVERELY UNDER STUDIED
PROTEINS AND WANTED TO TEST THIS
TYPE OF PROGRAM WOULD SIMULATE
RESEARCH IN THIS AREA AND
RELATIVELY SUCCEEDED THERE.
SO WE DEFINE UNDER STUDIED
PROTEINS IN THE CONTEXT OF THE
PROGRAM AS THOSE THAT HAVE FEWER
PUBLICATIONS AND LACK RO1
FUNDING MAYBE ONE OR NONE AND WE
IDENTIFY THREE PROTEIN FAMILIES
THAT HAVE SIGNIFICANT NUMBERS OF
UNDER STUDIED PROGRAMS AND A
HIGH PROBABILITY OF EFFECTING
HUMAN DISEASE THE ION CHANNELS
AND COUPLED RECEPTORS AND THE
KINASES.
SO THE PROGRAM ITSELF WAS BROKEN
UP TO TWO DIFFERENT PHASES.
THE FIRST WAS OUR PILOT PHASE A
$25.5 MILLION INVESTMENT AND HAD
TWO MAIN GOALS TO ADAPT SCALABLE
TECHNOLOGY PLATFORMS THAT
ALREADY EXISTED TO WORK ON IDG
PROTEIN FAMILIES AND THE SECOND
WAS TO DEVELOP A KNOWLEDGE AND
INFORMATION MANAGEMENT PLATFORM.
WE WERE ABLE THROUGH THE FIRST
PILOT PHASE TO DEVELOP CORE
UNDER STUDIED PROTEIN DATA SETS
AND EXPAND THESE INTERROGATION
PLATFORMS TO THE UNDER STUDIED
PROTEIN AREAS AND WE WERE ALSO
THROUGH THE DEVELOPMENT OF OUR
PROTEIN EXPLORATION SEARCH
ENGINE PREDICTIVE S IN TERMS OF
THE UNDER STUDIED PROGRAMS.
WHAT WE BUILT IN THE PILOT PHASE
HELPED ESTABLISH OUR
IMPLEMENTATION PHASE A $71
MILLION INVESTMENT WITH THREE
MAIN GOALS FOR THIS PARTICULAR
PHASE FIRST TO IDENTIFY
PHENOTYPES OF THE UNDER STUDIED
PROTEINS IN THE CONTEXT OF HUMAN
DISEASE.
THROUGH THAT WORK PROVIDE TOOLS
TO THE SCIENTIFIC COMMUNITY TO
FURTHER EXPLORE THE PRETEENS
OUTSIDE OF WHAT THE IGE COULD
ACCOMPLISH AND BUILDING ON THE
PLATFORM TO BUILD A RICH BASE.
WE DID SIGNIFICANTLY IMPROVE ON
THE INTERFACE AND UNDERLYING
DATABASE AND I'LL GET INTO THAT
SO DON'T WORRY.
I'LL EXPLAIN WHAT ALL THAT IS.
WE ALSO DEVELOPED A NUMBER OF
REAGENTS NOW AVAILABLE THROUGH
SEVERAL WELL-KNOWN REPOSITORIES
AND WE WORKED TO IMPROVE OUR
UNDERSTANDING OF THESE UNDER
STUDIED PROTEINS AND ARE ABLE TO
INCREASE OUR INFORMATION OF
NEARLY 100 OF THESE PROTEINS AND
THE ROLE OF HUMAN DISEASE AND
FINALLY WE DID HAVE A NUMBER OF
PLATFORMS DEVELOPED FOR
INTEGRATING THE UNDER STUDIED
GENOME.
THIS PROGRAM REALLY DEPENDED ON
THE CONSORTIUM STRUCTURE FOR
SUCCESS.
EACH COMPONENT REQUIRED THE
EFFORTS OF THE OTHERS IN ORDER
TO EFFECTIVELY GENERATE
RESOURCES AND TO ENSURE THE
PUBLIC WAS AWARE OF THE
RESOURCES.
OUR DATA AND RESOURCE GENERATION
CENTERS WERE REALLY OUR WETLABS.
THE ONES THAT WERE LOOKING AT
THE NITTY-GRITTY DEVELOPING
MOUSE MODELS AND CELL LINES AND
THE ROLE OF THE PROTEINS IN
HUMAN DISEASE.
THAT INFORMATION WHILE PROVIDED
TO THE PUBLIC WAS FED TO THE
KNOWLEDGE MANAGEMENT CENTER WAS
THE POWERHOUSE THAT OVERSEES THE
DATABASE AND INCORPORATE NOT
JUST INFORMATION FROM IDG
PROGRAM AND INFORMATION FROM
OVER 80 DATABASES INTO THE
DATABASE.
AND OUR FINAL CENTER WAS OUR
RESOURCE DISSEMINATION OUTREACH
CENTER.
THIS WAS THE ADMINISTRATIVE CORE
OF THE PROGRAM.
THEY WERE RESPONSIBLE FOR
ENSURING ALL THE RESOURCES MADE
IT OUT TO THE PUBLIC, THE PUBLIC
WAS AWARE OF THE WORK THE IDG
WAS DOING AND THINGS ALONG THOSE
LINES.
AN ADDITION TO THE CORE CENTERS
WE HAD AWARDS MADE OUR CUTTING
EDGE INFORMATICS TOOLS AWARD.
THIS WAS A FUNDING OPPORTUNITY
IN 2018 AND 2021 TO DEPLOY TOOLS
TO ENHANCE THE COMMUNITY'S
ABILITY TO PROCESS, ANALYZE AND
VISUAL DATA IN UNDER STUDIED
PROTEINS AND INTEGRATED IN THE
DATABASE.
IN ADDITION WE HAVE WHAT WE CALL
OUR RO3 PILOT PROJECT A NOFO
FROM 2018 TO 2022 TO HELP
SUPPORT THE GENERATION OF
PRELIMINARY DATA AND TOOLS
AROUND ELIGIBLE UNDER STUDIED
PROTEINS ALLOW THE AWARDEES TO
ELUCIDATE THE FUNCTION IN THE
CONTEXT OF HUMAN DISEASE PROVIDE
THEM WITH THAT FUNDING THEY NEED
TO GET THE PRELIMINARY DATA FOR
THEIR RO1 APPLICATION OR DRUG
DISCOVERY PROJECT.
AND IN THE FINAL FUNDING
OPPORTUNITY WE RELEASED WAS A
SMALL BUSINESS OPPORTUNITY FOR
SPECIALIZING UNDER STUDIED
PROGRAM FROM THE IDG PROGRAM
FOCUSSED TO INITIATE EARLY
RESEARCH THAT MAY LEAD TO THE
COMMERCIALIZATION OF STUDIES OR
PROJECTS.
SO THIS IS OUR LANDING PAGE FOR
PHAROS UNDER THE IDG PROGRAM AS
WELL AS DATA PULLED WHILE IT
INCLUDES INFORMATION FROM OTHER
COMMON FUND PROJECTS AS WELL AS
INCLUDING FROM MORE COMMON DATA
SOURCES SUCH AS PUB MED OR
KIMBALL.
IN THE PHAROS INTERFACE YOU CAN
SEARCH BY TARGET OF INTEREST,
DISEASE OR LIGAND AND SEARCH ANY
GENE IN THE HUMAN GENOME NOT
JUST ISOLATED TO UNDER STUDIED
PROTEINS.
SOMETHING UNIQUE ABOUT PHAROS
THROUGH THE WORK OF PULLING IN
ALL THE INFORMATION WE WERE ABLE
TO ASSIGN TARGET DEVELOPMENT
LEVELS TO EACH OF THE PROTEINS
IN PHAROS.
WE HAVE FOUR LEVELS.
THE LOWEST DARKEST LEVEL IS OUR
TDARK DESIGNATION TARGETS WHERE
WE DON'T KNOW ANYTHING OR HAVE
DRUG OR SMALL MOLECULE
ACTIVITIES AND EITHER HAVE A LOW
PUBLICATION NUMBER LESS THAN
FIVE USUALLY AND LESS THAN GENE
FUNCTION ANNOTATION AND LESS
THAN 50 ANTIBODIES ARE AVAILABLE
AGAINST THE PROTEINS.
NEXT IS WHAT WE CALL TBIO.
THEY HAVE NO KNOWN DRUG OR SMALL
MOLECULE KNOWN THERAPIES AND
HAVE MORE INFORMATION IN THE
CONTEXT OF PUBLICATION AND DATA.
THEY TYPICALLY SATISFY THE
CONDITIONS FOR TDARK AND HAVE A
MOLECULAR LEVEL ACTIVITY OR
KNOWN RELATIONSHIP BETWEEN
GENETIC VARIATION AND PHENOTYPIC
EXPRESSION.
NEXT IS THE TCHEM.
TARGETS WE HAVE AT LEAST ONE
COMPOUND WITH AN ACTIVITY
COMPOUND OF LESS THAN 30 NANO
MOLAR AND PRECEDING CONDITIONS.
THE HIGHEST PROTEINS IN WHICH WE
HAVE THE MOST KNOWLEDGE ARE WHAT
WE CALL TCLIN AND THEY TYPICALLY
HAVE ONE APPROVED DRUG AND
SATISFY ALL PRECEDING
CONDITIONS.
TO GIVE YOU AN IDEA OF THE TYPE
OF INFORMATION IN PHAROS IF YOU
SEARCH FOR A PROTEIN, I WANTED
TO SHOW THE MORE WELL STUDIED
PROTEINS.
THIS IS TUMOR NECROSIS FACTOR
MOST ARE FAMILIAR AND IT'S TCLIN
WITH FDA APPROVED DRUGS AGAINST
IT.
ON THE LEFT YOU CAN JUMP TO EACH
SECTION OF INFORMATION AROUND
THE PROTEIN.
THIS ISN'T -- I DON'T HAVE THE
FULL BAR THERE BUT YOU CAN SEE
AT LEAST THE SAMPLING OF THE
TYPES OF THINGS AVAILABLE IN
TERMS OF RESOURCES.
YOU CAN SEE THERE'S DISEASE
ASSOCIATIONS AND THINGS LIKE
THAT.
I WANT TO HIGHLIGHT A TOOL
DEVELO
DEVELOPED AND YOU CAN SEE WHERE
IT'S HIGHLIGHT ED AND IF YOU WAT
TO LOOK AT AN ANATOMICAL ENTITY
LEVEL YOU CAN USE THE CIRCLE
PLOT TOOL.
AND THAT WILL TAKE YOU ALL THE
WAY DOWN TO ANN -- AN ORAN --
AN ORGAN LEVEL AND CELL LEVEL
AND OTHER FEATURES PHAROS
PROVIDES FOR ANYONE WHO IS
LOOKING FOR INFORMATION AROUND
THEIR PROTEIN.
AS I MENTIONED THERE'S A NUMBER
OF APPROVED DRUGS AND YOU CAN
CLICK ON ANY OF THOSE AND LEARN
MORE ABOUT THEM THROUGH THE
PHAROS INTERFACE AND PROVIDES A
LIST OF PROTEIN-PROTEIN
INTERACTIONS THAT AGAIN YOU CAN
CLICK ON AND IT WILL TAKE YOU TO
THE LANDING PAGE TO LEARN MORE
ABOUT THEM THERE AND HAVE TWO
INTERACTIVE RESOURCES.
THE FIRST IS PATHWAYS.
IT WORKED ON REACTOME AN
EXPLORATION TOOL AND CLICK ON
THEM AND LEARN ABOUT THAT
PARTICULAR PATHWAY AND DIG DOWN
IN THE PATHWAY.
WE ALSO HAVE A STRUCTURE TOOL
THAT ALLOWS YOU TO LOOK AT THE
STRUCTURE OF A PARTICULAR
PROTEIN.
YOU CAN TURN IT AND CLICK ON
PARTS OF IT.
AND IT'S VERY DYNAMIC.
IT ALLOWS YOU TO TURN IT AROUND
AND MESS AROUND WITH IT A BIT.
AND BECAUSE THIS ONE WASN'T ONE
OF OUR UNDER STUDIED PROTEINS,
WE DON'T HAVE ANY IDG PROGRAM
GENERATED RESOURCES FOR OBVIOUS
REASONS BUT I DID WANT TO
MENTION THAT TYPICALLY YOU WOULD
FIND ON THE PAGES CELL LINES,
MOUSE MODELS, ASSAYS, CONSTRUCTS
THAT DEVELOPED BY THE IG
PROGRAM.
TO GIVE AN IDEA OF WHAT PHAROS
CAN PROVIDE IN TERMS OF
INFORMATION AROUND A
PARTICULARLY DARK PROTEIN, I
PULLED UP PAN 3.
IT'S A TDARK PROTEIN.
YOU CAN SEE THERE'S STILL A
SIGNIFICANT AMOUNT OF
INFORMATION AVAILABLE AROUND THE
PARTICULAR PROTEIN.
PAN 3 HAS A VERY NICE DISEASE
ASSOCIATION PAGE AND HAVE AL
ALGORITHMS -- HAVE AL --
ALGORITHMS AND THERE'S DISEASE
AND PREDICTIVE ASSOCIATIONS WITH
CANCER AND WE ALSO HAVE
INTEGRATED PROTEINS WHERE WE
DON'T HAVE A KNOWN STRUCTURE YOU
CAN USE LIGHT THE ALPHA FOLD
TOOL FOR A STRUCTURE OF A
PROTEIN AND YOU CAN MOVE IT
AROUND AND LOOK AT IT FROM
DIFFERENT ANGLES.
WE THINK PHAROS HAS HELPED IN
TERMS OF NEW AND RETURNING USERS
IN THE LAST YEAR WE'VE MADE A
NUMBER OF SIGNIFICANT UPDATES TO
THE INTERFACE TO ALLOW FOR MORE
EASE OF USE ON THE LEFT YOU CAN
SEE THE NUMBER HAS INCREASED
QUITE A BIT.
ON THE RIGHT IS AN IDEA OF HOW
THE DESIGNATIONS FOR THE
PROTEINS INVOLVED IN THE PROGRAM
HAVE EVOLVED OVER THE
IMPLEMENTATION PHASE IN 2018
THROUGH THE GPCR KINASE FAMILIES
WE'VE HAD AT LEAST 50% OF THOSE
PROTEINS HAVE MOVED FROM A TDARK
OR T CLIN DESIGNATION AND SEEING
SIGNIFICANT IMPACTS.
I THIS CAN YOU WILL ATTRIBUTED
TO THE IDG BUT HAS BEEN TO A
LARGER MOVEMENT OF ELIMINATING
STRUCTURAL GENOMICS CONSORTIUM
OPEN TARGETS IN N3035 WORKING
TOWARDS THIS AS WELL.
IT MEANS THERE'S A GROWING AND
CONTINUING INTEREST IN
UNDERSTANDING THESE DARK
PROTEINS AND LEARNING MORE ABOUT
THEM.
I'D BE REMISS IF I DIDN'T
HIGHLIGHT A WONDERFUL PROGRAM
WITH A GROUP IN ITALY.
THIS IS AN ITALIAN GROUP
UTILIZING PHAROS TO HELP MOVE
FORWARD A LOT OF THEIR RARE
DISEASE RESEARCH WE HAD A CALL
RELEASED IN RESPONSE TO A
GROWING NEED FOR TREMES FOR
PATIENTS WHO SUFFER FROM RARE
DISEASE AND THERE'S AN ITALIAN
NON-PROFIT ORGANIZATION
RECOGNIZED BY THE ITALIAN
MINISTRY AND SUPPORTING PATIENT
GROUPS WITH RARE GENETIC DISEASE
AND THERE'S A PRIVATE
PHILANTHROPIC PROGRAM WITH
SOCIAL WELFARE AND THEY PAIRED
TO HAVE SEVERAL FUNDING CALLS.
THERE'S BEEN THREE TO DATE AND
THEY FUND PROJECTS FOCUSSED ON
TDARK PROTEINS WITHIN THE RARE
DISEASES OF GENETIC AND RARE
GENETIC ORIGIN AND THEY INVESTED
IN 45 PROJECTS TO STUDY THE ROLE
OF TDARK PROTEINS IN MANY AREAS
OF RARE DISEASE INCLUDING
MITOCHONDRIAL DISORDERS AND
PEDIATRIC BONE DISORDERS AND
RARE DISORDERS AND MANY OTHERS.
THIS IS A NOTABLE EXAMPLE OF HOW
WE COMPARE WITH OTHER GROUPS AND
HOW PHAROS CAN BE UTILIZED HOW
THE DARK PROTEINS CAN SERVE A
ROLE IN HUMAN DISEASE AND USE
THOSE AS TARGETS FOR TREATMENT.
AND I'D LIKE TO HIGHLIGHT A
PARTNERSHIP WITH ONE OF OUR
COMMON FUND PROGRAMS AND THAT'S
THE KNOCKOUT MOUSE PHENOTYPING
PROGRAM.
A PARTNERSHIP FROM SEPTEMBER
2022 TO LOOK AT ION CHANNEL
KNOCKOUT MOUSE MODELS GOING
WELL.
I WANTED TO PROVIDE A BIT OF AN
EXAMPLE IN TERMS WHAT WE'LL SEE
AS THE OUTPUT ONCE THE MICE ARE
ALL ABLE.
PLLP IS ONE OF OUR ION CHANNEL
PROTEINS AND YOU CAN SEE HERE
THEY RUN A PHENOTYPIC SUMMARY ON
THE MICE ONCE THE MICE HAVE BEEN
DEVELOPED.
THEY LOOK AT A NUMBER OF TISSUES
AND PLLP IS INVOLVED IN SKIN
MORPHOLOGY.
THIS ALLOWS OUR INVESTIGATORS
THE SCIENTIFIC COMMUNITY TO TAKE
THESE MICE AND UTILIZE THEM AS A
STARTING POINT TO IDENTIFY A
ROLE THROUGH THIS PARTICULAR
PROTEIN AND UNDER STUDIED
PROTEINS IN HUMAN DISEASE.
ONE OF THE MOST SUCCESSFUL
ASPECTS OF THE PROGRAM WAS OUR
PILOT PROJECT R3 INITIATIVE.
THIS WAS HIGHLY SUCCESSFUL
BECAUSE WE HAD VERY HIGH LEVELS
OF SCIENTIFIC OUTPUTS FOR WHAT
WE COULD CONSIDER LITTLE UP
FRONT INVESTMENT.
THEY WERE AWARDS WITH $100,000
DIRECT COST PER YEAR A ONE-YEAR
AWARD AND TO SUPPORT THE
GENERATION OF PRELIMINARY DATA
AND TOOLS AROUND IDG UNDER
STUDIED PROTEINS IN THE CONTEXT
OF HUMAN DISEASE AND UTILIZE
THAT TO OBTAIN SUFFICIENT
PRELIMINARY DATA TO APPLY FOR
THE SUBSEQUENT LARGER AWARD.
THROUGH THE PROGRAM WE WERE ABLE
TO LOOK AT OVER 120 PROTEINS
THROUGH 98 AWARDS AND HAVE ABOUT
60 PUBLICATIONS TO DATE.
THIS WAS ALSO A FANTASTIC WAY TO
PULL IN EARLY STAGE AND NEW
INVESTIGATORS IN THE COMMON FUND
PROGRAMS.
OFTEN THESE LARGE CONSORTIUM
AWARDS ARE INTIMIDATING FOR
EARLY STAGE INVESTIGATORS.
THIS WAS A WAY TO GET THEM
COMFORTABLE WITH COMMON FUND
PROGRAMS EARLY IN THEIR YEAR IN
UNDER STUDIED PROTEINS.
I CAN'T GO THROUGH EVERYTHING
BUT THERE ARE SOME AWARDEE
ACHIEVEMENTS I'D LIKE TO
HIGHLIGHT.
WE HAD A NUMBER OF FOLLOW-ON
PROJECTS AWARDED AND A COUPLE
ONE ON COGNITION AND VOCAL
COMMUNICATION AND ANOTHER ONE
LOOKING AT THE NECK FAMILY OF
KINASES IN CANCER AND R21 AWARDS
THAT IDENTIFY INDIGENOUS PET
LIGANDS TO LOOK AT THE ROLES IN
CNS DISORDERS AND KINASES IN
HEARING LOSS AND AWARDS FOR THE
EXPLORATION OF GPR83 AND OPIOID
ADDICTION AND A WARD TO LOOK AT
DARK KINASES IN CARDIAC ATROPHY.
I WANT TO HIGHLIGHT THIS IS
STILL EARLY.
AND WE HAVE 2030 ONGOING.
SO WE'RE GOING TO BE SEEING MORE
RESULTS FROM THIS IN THE FUTURE.
THIS IS KIND OF A BIT OF A
TOW-IN IN WHAT WE'RE EXPECTING
TO SEE IN TERMS OF THE SUCCESSES
OF THE PROGRAM.
THIS LED TO OTHER I.C.s USING
THIS AND NCATS HAS TAKEN UP THE
MODEL AND APPLYING THIS BEYOND
THE PROGRAM.
I WANT TO HIGHLIGHT ONE
PARTICULAR SUCCESS THAT'S A
GREAT EXAMPLE OF HOW WE TAKE
SOMETHING THAT'S COMPLETELY DARK
ALL THE WAY TO THE POINT OF
POTENTIAL COMPOUND UTILIZATION
AND TREATMENT FOR PATIENTS.
THIS IS A PROJECT THAT WAS
AWARDED TO THE UNIVERSITY OF
MONTANA AN R3 AND LOOKING AT
RIOK3 IN A FEVER VIRUS AND
IDENTIFIED THE ROLE IN ANTIVIRAL
IMMUNITY AND TOOK THE
INFORMATION AND PAIRED WITH A
COMPANY THAT WERE AWARDED AN
SPIR AWARD TO DEVELOP AS A NOVEL
THERAPEUTIC TARGET FOR LUPUS AND
THERE'S SMALL MOLECULES TO BIND
WITH NANO MOLAR AFFINITY AND YOU
CAN SEE THE DATA ON THE RIGHT.
THE BLUE BARS ARE THEIR
TREATMENTS AND THOSE ARE
INDICATORS OF INFLAMMATION AND
YOU SEE THE REDUCTION OF THE
CELLS OF INFLAMMATORY MARKERS.
THIS IS A FANTASTIC EXAMPLE OF
HOW WE'VE BEEN ABLE TO BRING
SOME OF THESE DARK PROTEINS
HOPEFULLY MORE INTO THE LIGHT.
I'M GOING TO WRAP UP WITH THE
IMPACTS ON THE FIELD.
ON THE LEFT ARE PUBLICATIONS
NON-IDG PUBLICATIONS.
THIS IS AN ANALYSIS THAT DOES
NOT INCLUDE PUBLICATIONS FROM
AWARDEES OF OF IDG PROGRAM AND
THE INITIATION PHASE OF THE
PROGRAM AND WE SAW SIGNIFICANT
INCREASES AFTER THE
IMPLEMENTATION PHASE OF THE
PROGRAM.
SO THAT'S ENCOURAGING AND WHILE
WE CAN'T SPECIFICALLY DIRECTLY
RELATE THAT TO THE IDG PROGRAM
IT'S ENCOURAGING TO SHOW THE
COMMUNITY IS INTERESTED IN
PURSUING THEM.
ON THE RIGHT IS THE PUBLICATIONS
FROM THE IDG PROGRAM AND YOU CAN
SEE THEY HAVE INCREASED STEADILY
EVERY YEAR AND THAT CITATIONS
HAVE INCREASED.
CLEARLY THERE'S INTEREST IN THE
COMMUNITY AROUND THE PARTICULAR
PROTEINS IN TERMS OF HUMAN
DISEASE.
AND IN TERMS OF THE IMPACT ON
THE FUTURE, WE'RE WORKING TO HOW
TO SUSTAIN PHAROS IN THE LONG
TERM AND USEFUL TO A NUMBER OF
GROUPS AND CERTAIN OPTIONS ARE
BEING EXPLORED TO SUSTAIN PHAROS
AFTER THE PROGRAM AND MAKE SURE
IT'S AVAILABLE TO EVERYONE EVEN
AFTER THE PROGRAM SUN SETS WE
HAVE PILOT AWARDS STILL COMING
IN AND WE HAVE SEEN A
SIGNIFICANT IMPACT IN TERMS OF
WHAT'S ALREADY COME IN.
AND BECAUSE OF THE SUCCESS OF
THAT PARTICULAR ASPECT OF THE
PROGRAM, WE HAVE A NUMBER OF
COMMON FUND AND NIH INSTITUTES
AND CENTERS INCORPORATING THIS
FORMAT TO THE OTHER INITIATIVES.
AND AS MENTIONED BEFORE THERE'S
A HUGE BENEFIT FOR INCORPORATING
THIS PROGRAM BECAUSE IT ALSO
PULLS IN EARLY CAREER
INVESTIGATORS AND ALSO
STIMULATES SIGNIFICANT DOWN
STREAM RESEARCH WITH A LOW UP
FRONT INVESTMENT.
WE ARE WORKING TO ENSURE THE
SUSTAINABILITY OF MANY RESOURCES
THAT WERE DEVELOPED BY THE
PROGRAM THROUGH THE UTILIZING OF
PUBLIC REPOSITORIES.
THEY SHOULD PERSIST WELL BEYOND
THE PROGRAM AND IN GENERAL
PROGRAM HAS INCREASED VALUE AND
DEMONSTRATES THE VALUE TO HUMAN
DISEASE.
WE HAVE A SERIES OF PAPERS THE
DRUGGABLE GENOME SPECIAL SERIES
THROUGH DRUG DISCOVERY TODAY
WHERE WE ESSENTIALLY HIGHLIGHT
THE SUCCESSES OF THE PROGRAM AND
ALSO A LOT OF THE RESOURCES THAT
WERE DEVELOPED.
THE NIH RELEASED THE
ILLUMINATING THE DRUGGABLE GEEB
OME PATHWAYS TO FRUSTRATION AND
THERE'S ONE FROM OUR CIT
AWARDEES AND A COUPLE FROM OUR
OUR RESOURCE AND DISSEMINATION
CENTER.
IF YOU ARE INTERESTED IN READING
MORE AND LEARNING A LITTLE BIT
MORE ABOUT THE DIFFERENT ASPECTS
OF THE PROGRAM, DEFINITELY CHECK
THAT OUT.
IT'S AVAILABLE NOW AND I THINK A
COUPLE OF THE ARTICLES ON THE
BOTTOM ARE STILL COMING OUT BUT
SHOULD THERE BE IN THE NEXT
COUPLE WEEKS.
THANK YOU TO THE LEADERSHIP AND
OUR CO-CHAIRS HAVE BEEN
FANTASTIC.
AND YOU CAN SEE THE PROGRAM HAS
BENEFITTED FROM BENEFITING INPUT
FROM THIS MANY INSTITUTE AND
ALSO ALLOWED US TO DISSEMINATE A
LOT OF THE LESSONS LEARNED IN
TERMS OF HOW WE RUN PROGRAMS AND
THE RESOURCES DEVELOPED.
I WANT TO THANK THE WORK GROUP
AND I'M HAPPY TO ANSWER
QUESTIONS.
>> THANKS SO MUCH FOR THE
PRESENTATION.
AS AN ION CHANNEL MYSELF I
ALWAYS FOUND THE PROGRAM
INTERESTING.
LET ME OPEN IT UP TO THE COUNCIL
FOR ANY QUESTIONS OR COMMENTS ON
THE FINAL REPORT OUT.
KEN.
>> THANKS A LOT.
OUT OF FULL DISCLOSURE WE WAS
INVOLVED IN THE PROJECT A LITTLE
BIT AND AT THE SAME TIME I WANT
TO SAY IT WAS EXCITING.
A GREAT PROGRAM.
I'M GLAD TO SEE YOUR LAST SLIDE
REGARDING THE FUTURE AND
MAINTAINING THE PHAROS DATABASE
IS DEFINITELY A VERY IMPORTANT
POINT.
I'M GLAD TO SEE IT'S NUMBER ONE
BUT IT'S NOT JUST KEEPING IT
ALIVE ONLINE AND ACCESSIBLE BUT
ALSO ENSURING IT'S UP TO DATE
WHICH IS THE EXTENSIVE PART
BECAUSE IT REQUIRES PEOPLE TO DO
THAT.
AND SOME HAVE DATA INTEGRATION
BETWEEN PHAROS AND COMP AND
OTHER DATA LINKING THROUGH
PHAROS.
THERE'S A LOT OF INTEGRATION
BETWEEN DIFFERENT DATA SETS THAT
LACE INTO THE PREVIOUS
PRESENTATION THAT WE HEARD ABOUT
THE GENERALIST REPOSITORIES.
ANYWAY, GREAT PROGRAM AND THANKS
FOR THE REPORT AND I DO THINK IT
WOULD BE IMPORTANT TO FIND OUT
HOW TO ENSURE THE PHAROS STAYS
ALIVE.
THANK YOU.
>> WE'RE WORKING HARD ON THAT.
WE HAVE A NUMBER OF DIRECTIONS
WE'RE EXPLORING RIGHT NOW AND I
BELIEVE PHAROS WILL LIVE ON IN
SOME FORM.
WHAT THAT WILL BE WE'LL HAVE TO
SEE BUT YOUR POINT IS TAKE EN IN
KEEPING IT ACTIVE ALIVE AND IT'S
IMPORTANT IT REMAINS UPDATED AND
RELEVANT.
DEFINITELY WORKING ON THAT FOR
SURE.
ANY OTHER COMMENTS OR THOUGHTS
FROM THE COUNCIL?
JEAN.
>> THIS IS A QUICK ONE.
I LOVE THE IDEA OF BRINGING NEW
RESEARCHERS INTO THIS THE RO3s
AND DO YOU KNOW WHO THEY ARE?
DO WE HAVE DEMOGRAPHICS ON WHO
WE BROUGHT INTO THE FIELD?
I'D LOVE TO HEAR THAT.
THE SECOND THING I'D LIKE TO
HEAR ABOUT IS I FEEL IT'S AN
APPROACH WE CAN USE OTHER PLACES
AS A TEMPLATE.
WE KEEP SAYING WE NEED NEW
RESEARCHERS AND IF THIS IS
WORKING CAN WE USE THAT IN OTHER
METHODS.
COULD BE A TEMPLATE AND
YESTERDAY WE SAID WE CAN'T ADD C
GRANTS BUT THAT'S THE WAY TO GET
YOUNG PEOPLE IN AND MAKE SURE
IT'S NOT SUCH A HIGH BARRIER
THEY FEEL THEY CAN'T WIN THE
GRANT.
I THINK WE HAVE TO FIND WAYS TO
BRING PEOPLE IN THE SYSTEM AND
YOU HAVE OBVIOUSLY FOUND A WAY
TO DO THAT AND THE LAST
QUESTION, WHY ARE THE KINASES
DOING SO MUCH BETTER?
>> I'LL START WITH THE FIRST
QUESTION.
SO, WHAT WE'VE SEEN IS THESE
LARGER AWARDS PARTICULARLY
COMMON FUND BECAUSE THEY'RE BIG
CONSORTIUM AWARDS IS INTIMI
INTIMIDATING TO HAVE SOMEONE OUT
OF THEIR POSTDOC OR JUST
STARTING AS A PROFESSOR TO PUT
TOGETHER A TEAM TO MANAGE A
LARGE AWARD.
THIS WAS OUR ATTEMPT TO SOLVE
THAT OR PULL IN PEOPLE WHO HAVE
FRESH PERSPECTIVES WITHOUT
SCARING THEM AWAY WITH LARGE
AWARDS.
SO YES, I HAVE DATA IN TERMS OF
WHO WE'VE BEEN AWARDING AND
WHERE NEW INVESTIGATORS ARE.
I DON'T HAVE IT IN FRONT OF ME.
I'D BE HAPPY TO SEND INFORMATION
TO YOU.
THE THING IS I WILL SAY THAT A
LOT OF MAKING SURE THAT WE GET
GROUPS THAT ARE NOT JUST
INSTITUTES WE KEEP FUNDING IS
MAKING SURE THE INSTITUTES ARE
AWARE OF THE FUNDING
OPPORTUNITIES.
WE TRY TO MAKE A POINT TO REACH
OUT TO GROUPS THAT ARE LARGER
AWARDEE INSTITUTIONS TO MAKE
SURE THEY'RE AWARE.
SOME WORK NEEDS TO BE DONE TO
HOW BEST TO ENCOURAGE
APPLICATIONS.
REACHING OUT IS ONE THING AND
MAKING SURE THEY'RE AWARE BUT IF
THEY DON'T APPLY, YOU'RE NOT
SOLVING THE PROBLEM.
WE'RE WORK ON THAT FOR THE
SECOND QUESTION IN TERMS OF THE
KINASES, THE KINASE GROUP AND
THE GPCR GROUP HAD A LOT OF BASE
PLATFORM BUILD UP IN THE PILOT
PHASE.
SO THEY IN GENERAL THEIR NUMBERS
TEND TO BE A LITTLE NICER
LOOKING NOT IN TERMS ACHIEVEMENT
BUT MOVING OUT OF THE TDARK
GROUP AND SOME ARE HARDER TO
DEAL WITH.
SO THAT EXPLAINS A LITTLE BIT
ABOUT WHY THE KINASES MAY BE
SEEING AFFECTS.
VERSUS KINASES VERSE THIS GPCR
GROUP THE KINASE FOCUSSED MORE
ON A NETWORK LEVEL IN TERMS OF
THE WAY THEY WERE LOOKING HOW
THE KINASES FUNCTION INSIDE THE
HUMAN BODY.
THE GPCR GROUP TOOK IT
ONE-ON-ONE.
IF YOU LOOK AT TOTAL NUMBERS
DON'T REFLECT THE TWO BUT IF YOU
LOOK DEEP DOWN THE KINASE MOVED
MORE FORWARD AND THE OTHER GROUP
MOVED THEM FORWARD AND THERE'S
ROLES IN DISEASE SPECIFICALLY
NOW GOING INTO CLINICAL TRIALS
AND SO THEY'RE A LITTLE BIT
DIFFERENT IN TERMS OF THE OUTPUT
YOU'RE SEEING.
>> THANKS.
>> THERE'S LESSONS TO BE LEARNED
WE COULD CARRY OVER MORE BROADLY
HERE.
>> THANK YOU SO MUCH, KARLIE.
SO WE'RE AT 2:46 WE HAVE BURNED
THROUGH OUR BREAK.
I GUESS A QUESTION FOR THE GROUP
IS DO WE WANT TO KEEP PUSHING
THROUGH AND SEE IF WE CAN GET
DONE AT 3:15 ON TIME -- I'M
SEEING SHAKING OF YES.
LET'S GO AHEAD AND MOVE FORWARD
WITH THAT.
OUR FINAL PRESENTATION TODAY
THEN IS GOING TO BE FROM
DRDR
DR. SHEELEY YOU HEARD FROM
EARLIER TODAY AND YESTERDAY AND
BRIONNA HAIR FROM THE OFFICE OF
STRATEGIC COORDINATION.
THEY'RE GOING TO PRESENT THE
FINAL REPORT OF THE COMMON FUND
PROJECT ENTITLED GLYCOSCIENCE
AND I'M LAUGHING BETWEEN THE
LAST TWO PRESENTATIONS WE HIT
THE SPECTRUM OF MY RESEARCH
BACKGROUND THE GLYCOBIOLOGYIST
AND MICROSKOPIST.
THERE YOU GO.
I'M GOING TO TURN IT OVER TO
DRUG AND BRIONNA.
>> THANKS, TARA.
I'LL INTRODUCE THE PROGRAM AND
TALK ANECDOTALLY WHAT THE
PROGRAM ACCOMPLISHED AND THEN
BRIONNA IS GOING TO TALK ABOUT
FORMAL EVALUATION IN THE PAST
YEAR.
IT'S A PLEASURE TO HAVE THE
OPPORTUNITY TO TALK ABOUT THE
PROGRAM BECAUSE I'VE BEEN
ASSOCIATED WITH IT FROM THE
BEGINNING.
I WAS ONE OF THE PROGRAM
COORDINATORS WHEN WE STOOD THE
PROGRAM UP AND ABLE TO STICK
WITH IT SOME TIME AND IT'S BEEN
ONE OF MY FAVORITE THINGS TO DO
AT THE NIH.
SO CARBOHYDRATES PLAY MANY MANY
DIFFERENT ROLES IN ALL SORTS OF
SYSTEMS AND CONTEXTS IN HUMAN
HEALTH AND DISEASE AND THEY
MANIFEST IN DIFFERENT WAYS.
THEY'RE GENERALLY FOUND IN
COMPLEX BIOLOGICAL SYSTEMS
ATTACHED TO OTHER MOLECULES AND
MODIFYING THEIR FUNCTION AND
HALF LIFE AND CIRCULATION AND
OTHER THINGS.
SO, DESPITE THE FACT
CARBOHYDRATES PLAY ROLES BIO
LOGICALLY, WE HAVE A LOT OF
BARRIERS TO TRY TO UNDERSTAND
THE ROLES AND HOW THE
CARBOHYDRATES DO THOSE THINGS.
THIS PRAGMATIC CONSIDERATION IN
CARBOHYDRATE CONSIDERATIONS IN
BIOLOGY ARE NUMEROUS.
I WON'T GO THROUGH ALL OF THEM.
YOU CAN THINK OF IT ONE METAPHOR
WE USED MANY YEARS AGO WAS AS A
BIG TRAFFIC JAM.
ONE OF THE ISSUES IS WE DON'T
HAVE ENOUGH TOOLS AND PEOPLE
STEEPED IN THIS AREA TO BE ABLE
TO HELP EVERYBODY WHO WANTS TO
STUDY IT.
IT'S SUCH AN ARCANE AREA THAT'S
TOUGH TO GET INTO.
I STARTED IN GRADUATE SCHOOL
STARTING ON SEQUENCING
CARBOHYDRATES AND THE PEOPLE WHO
SEQUENCE PROTEINS ACROSS THE
RIVER UP BOSTON THOUGHT WE WERE
CRAZY BECAUSE IT WAS A STRANGE
AND DIFFICULT THING TO DO.
BUT IT GUARANTEED EMPLOYMENT BUT
THAT'S NOT WHAT YOU WANT IN THE
FIELD.
YOU WANT TO GROW.
YOU DON'T WANT TO HAVE A
SITUATION WHERE THE SPECIALISTS
ARE NECESSARY BECAUSE NOBODY
ELSE CAN UNDERSTAND IT AND WE
TRIED TO IMPROVE THE SITUATION.
WE FOUND OURSELVES BACK IN 2012,
2013 FRUSTRATED AT THE LACK OF
ACCESS TO SEVERAL TOOLS NEEDED,
ANALYTICAL BASES AND PLATFORMS
AND APPROACHES AND STANDARDS FOR
EXPERIMENTS.
THE NIH AND SOME OTHER AGENCIES
COMMISSIONED A STUDY BY THE
NATIONAL ACADEMY OF SCIENCE THE
COUNCIL IN 2012 PUBLISHED A
REPORT TALKING ABOUT THE
LANDSCAPE OF GLYCOSCIENCE AND
WITH THE ACKNOWLEDGEMENT GLYCANS
PLAY A ROLE AND OFTEN HARD TO
STUDY AND IDENTIFIED PRIORITIES
INCLUDED TRANSFORMING
GLYCOSCIENCE FROM A FIELD
DOMINATED FROM SPECIALISTS TO A
WIDELY STUDIED AND INTEGRATED
DISCIPLINE THAT FITS IN WITH
OTHER AREAS OF SCIENCE WHICH IS
RELEVANT WHERE THERE'S MORE
ACCESS AND MORE SCIENTISTS CAN
WORK IN THIS FIELD WITHOUT
HAVING TO BE COMPLETELY
COMMITTED TO IT.
SO THAT'S WHAT LED TO THE
DEVELOPMENT OF THIS PROGRAM.
THE PROGRAM IS A LITTLE BIT
DIFFERENT THAN SOME OTHER COMMON
FUNDS YOU MIGHT HAVE HEARD
ABOUT.
IT WAS FUNDED FOR A PERIOD OF
SEVEN YEARS WITH ONLY ONE PHASE.
AND THERE WERE THREE ARMS TO THE
PROGRAM.
IN EACH ONE OF THOSE IN MOST OF
THOSE AND INITIATIVES ONE 1 AND
2 AND 4 AND ONE WAS IN THE
INFORMATICS.
THE FIRST INITIATIVE WAS TO
DEVELOP FACILE METHODS AND TOOLS
FOR SYNTHESIS.
THE IDEA WAS TO PROVIDE GREATER
ACCESSIBILITY OF LOWER COST,
SHORTER TURNAROUNDS TO
SYNTHESIZE EFFORTS.
ALSO, WE WANTED TO DEVELOP
ANALYTICAL TOOLS NOT JUST BETTER
TOOLS BUT BETTER ACCESSIBLE
TOOLS.
THINGS PEOPLE CAN BUY IN KITS
AND ADOPT EASILY IN THE CONTEXT
OF OTHER WORK IN OTHER FIELDS.
AND INFORMATICS INTEGRATE
DISPARATE EFFORTS AND BRING THEM
TOGETHER TO ONE COHESIVE
KNOWLEDGE BASE THAT COULD BE
INTEGRATED OTHER EFFORTS AND
I'LL TALK ABOUT THAT WHEN WE
FINISH THIS SECTION.
INITIATIVE 4 WAS ONE COMPONENT
OF OUR EFFORTS TO TRY TO
DISSEMINATE THE TOOLS BEING MADE
BY OFFERING MODEST SUPPLEMENTS
TO NIH-FUNDED INVESTIGATORS WHO
WERE SUPPORTED BY THE DIFFERENT
INSTITUTES AND CENTERS WHEN THEY
THOUGHT ONE OF THE TOOLS THAT
HAD BEEN DEVELOPED IN THE
PROGRAM COULD HELP THEM IN THEIR
RESEARCH TO TRY TO BRING THAT
IN.
SO THEY COULD COMMIT STAFF TIME
RESOURCES TO TRY TO PULL THOSE
RESOURCES INTO THEIR RESEARCH.
SO MANY MANY AWARDS FUNDED FOR
SHORT PERIOD OF TIME OVER SEVEN
YEARS.
I WANT TO TAKE A MOMENT TO
ACKNOWLEDGE THE PEOPLE WHO
WORKED ON THE PROGRAM.
THERE WERE SOME WONDERFUL
PROGRAM STAFF ACROSS SEVERAL
INSTITUTES.
YOU CAN SEE SOME IN THE FRONT
ROW OF THE PHOTO.
A LONG TIME PROGRAM OFFICER
WITHIN CARBOHYDRATE AREA AND
NIDCR AND OTHERS AND YOU CAN SEE
I REALLY LIKE THIS TIE.
I WEAR IT EVERY CHANCE I GET, I
GUESS.
SO VERY BRIEFLY, THINGS THAT
CAME FROM THE PROGRAM.
WE WANTED BETTER SYNTHETIC
METHODS AND CAME UP WITH
AUTOMATION PLATFORMS THAT COULD
BE HOME BUILT OR ADOPTED,
SYNTHETIC METHODS ADOPTED BY
COMPANIES THAT SYNTHESIZE
GLYCANS AND ANALYTICAL TOOLS AND
AFFINITY RE-AGENTS, TECHNOLOGIES
THAT HAVE BEEN BEEN THROUGH
PROOF OF CONCEPT AND ADOPTED AND
COMMERCIALIZED AND I THINK SIX
DIFFERENT PRODUCTS HAVE BEEN
COMMERCIALIZED.
AND A UNIFIED AND INFORMATICS
EFFORT WHICH GRADUATED FROM THE
GLYCOSCIENCE AND SUPPORT ON AN
ONGOING BASIS AT NIGMS AND I'LL
TALK FOR A MINUTE ABOUT THAT
EFFORT.
IS GLYGEN HAS BEEN DEVELOPED FOR
PROTEIN INFORMATION AND GENETIC
INFORMATION.
AND IT WAS DEVELOPED BY A
REMARKABLE TEAM THAT HAD GREAT
CONNECTIONS AND BUILT GREAT
CONNECTIONS WITH THE PEOPLE
DOING THAT WORK AND THE
COMMUNITY.
THIS IS AN EXEMPLARY PROGRAM
THAT PREDICATED ALMOST ENTIRELY
ON USE CASES FROM EXPERT USERS
TO TRY TO DEVELOP TOOLS THAT
WOULD BE USEFUL TO THE COMMUNITY
AND PROVIDES A LOT OF TRAINING
RESOURCES AND IS THE ABILITY TO
DO A RANGE OF SEARCHS.
I WANTED TO GIVE YOU A VERY HIGH
LEVEL SENSE OF THINGS TO DO WITH
GLYGEN.
IF I WANT TO DO A SEARCH ON THIS
AND I GET A HIT LIST.
AND THE IS A HORMONE ON THE
ALPHA SUB UNIT AND MAINTAINED
ACROSS THE PROTEINS AND THE BETA
SUB UNITS ARE UNIQUE TO THE
INDIVIDUAL HORMONES.
SO THE CONSERVED ALPHA SUB UNIT
AND FIND THE SUCCESSION NUMBER
AND IT SITS INSIDE THIS
KNOWLEDGE BASE.
INCLUDING THE ISOFORM AS IT ARE
PRESENT AND CAN FIND DETAILED
INFORMATION THERE.
WE CAN GET ANY LEVEL OF
INFORMATION WE CAN GET TO.
VERY CONVENIENT.
WE CAN ALSO SCROLL DOWN AND SEE
A LIST OF ALL THE GLYCOSYLATION
AND CARBOHYDRATE STRUCTURES
ATTACHED TO THAT PROTEIN AND
GIVES THE NUMBER IN THE DATABASE
THAT LINKS OUT TO OCCURRENCES
AND PICK ONE OUT THEN GO OUT TO
THE PROTEIN DATA BANK AND SEE
THE STRUCTURE ATTACHED TO THE
STRUCTURE OF THE PROTEIN.
AND THIS IS SOMETHING THAT CAME
OUT OF THE GLYCOSCIENCE PROGRAM.
THE ABILITY TO SHOW THE DETAILED
WIRE FRAME STRUCTURE AND SUPER
IMPOSE THE STRUCTURE ON TOP SO
PEOPLE CAN MAKE SENSE OF WHAT
THEY'RE SEEING THE SAME WAY THEY
LOOK AT THE RIBBON DIAGRAM OF A
PROTEIN.
WE CLEANED UP THE RELATIONSHIPS
BETWEEN THE CARBOHYDRATE
STRUCTURES AND GENERATED NEW
WAYS TO BE ABLE TO MANIFEST THE
STRUCTURES.
THERE'S A VERY LONG LIST OF
CARBOHYDRATE STRUCTURE ARE
HETEROGENOUS AND ONE UNUSUAL
WHICH HAS A SULPHATED
GLYCOSAMINE AND WE CAN FIND OUT
THE INFORMATION ABOUT THE
DIFFERENT CARBOHYDRATED
STRUCTURE MOW TEENS AND IF WE
LOOK DOWN WE CAN SEE THE BIO
SYNTHETIC ENZYMES IMPORTANT FOR
THE SYNTHESIS AND IF WE'RE
CURIOUS WHETHER THE STRUCTURE IS
REALLY THERE WE CAN GO OUT AND
LOOK AT THE LITERATURE
REFERENCES ASSOCIATED WITH IT.
WE GO TO PUB MED AND SEE THE
ORIGINAL 1991 PAPER THAT
REPORTED AND WE CAN DECIDE
WHETHER WE THINK THE LITERATURE
SUPPORTS THAT AND A WAY TO
INTEGRATE THE DIFFERENT ASPECTS.
THERE ARE MUCH MORE
SOPHISTICATED THINGS WE CAN DO
BUT SOMETHING TO ME AS A PERSON
WHO STUDIED CARBOHYDRATE
STRUCTURES RESONATED WITH ME THE
ABILITY TO PUT ALL THIS
INFORMATION IN ONE PLACE AND
HAVE ALL THE STRUCTURES PRESENT
AND ASSEMBLE THE RELATIONSHIPS.
I'LL CONCLUDE WITH THE ANECDOTAL
REPORT ABOUT THE PROGRAM AND
TURN IT OVER TO BRIONNA WHO WILL
TALK ABOUT THE EVALUATION WE DID
OVER THE PAST YEAR.
>> THE COMMON FUND DECIDED TO DO
AN EVALUATION WITH THE PROGRAM
AND WHETHER IT MET ITS GOALS.
WE DEVELOPED THREE KEY QUESTIONS
TO ASSESS THE PROGRAM.
THE FIRST QUESTION FOCUSSED ON
WHAT RESOURCES WERE DEVELOPED BY
THE PROGRAM AND HOW THEY WERE
MADE AVAILABLE TO THE RESEARCH
COMMUNITY.
SO THIS QUESTION AIMED TO
EVALUATE HOW SUCCESSFUL THE
PROGRAM WAS AT GENERATING AND
MAKING AVAILABLE TOOLS
ACCESSIBLE.
THE SECOND QUESTION FOCUSSED ON
THE PROGRAM'S IMPACT.
WE WANTED TO EVALUATE THE
PROGRAM'S RESOURCES BY EXPERTS
AND NON-EXPERTS IN GLYCOSCIENCE
AND THE THIRD QUESTION FOCUSSED
ON HOW THE PROGRAM HAS
FACILITATED ACCESS TO RESOURCES
FOR THE RESEARCH COMMUNITY.
TO IMPLEMENT THE EVALUATION WE
AT THE COMMON FUND WORKED WITH
THE PLANNING AND EVALUATION
BRANCH AND THE CONTRACTING GROUP
TO DESIGN AND CARRY OUT THE
EVALUATION.
FOR THIS EVALUATION, WE DECIDED
TO USE A MIXED METHODS APPROACH.
ONE COMPONENT WAS BUILD METRIC
ANALYSIS.
FOR THIS WE CARRIED A CATALOG OF
KEY PUBLICATIONS WE FELT
GENERATED FROM THE PROGRAM.
WE ALSO CATEGORIZED AUTHORS AS
GLYCOOR NOT GLYCOSCIENTISTS AND
THOSE WHO ARE NON GLYCO
SCIENTISTS AS NON-SPECIALIST AND
THERE'S A COMPONENT TO THE
EVALUATION THAT INVOLVED
CONDUCTING 20 IN DEPTH
INTERVIEWS.
THE PURPOSE OF THE INTERVIEWS
WAS TO GIVE CONTEXTUAL DATA
WHETHER THE GLYCO SCIENTISTS
FOUND THEM TO BE USEFUL AND DRAW
THE INTERVIEWEES TO CITE THE
RESOURCE AND THEY WEREN'T USING
THE RESOURCE AS PART OF THEIR
METHODS BUT JUST IN THE
INTRODUCTION AND WANTED INSIGHT
IN THE UTILITY OF THE PROGRAM'S
RESOURCES WE ENDED UP DRAWING
THE MAJORITY OF AUR
NON-SPECIALIST INTERVIEWEES FROM
RESEARCHERS FUNDED ADMIN
SUPPLEMENTS TO USE RESOURCES
DEVELOPED BY THE PROGRAM.
SO THE 20 INTERVIEWEES SOME
CITED IT IN THE METHODS SECTION
BUT MOST THROUGH THE ADMIN
SUPPLEMENTS TO BE ADOPTERS OF
THE RESOURCES.
THE FIRST QUESTION WE WANTED TO
ASSESS WHAT RESOURCES WERE
DEVELOPED BY THE PROGRAM AND HOW
WERE THEY DISSEMINATED TO A
SCIENTIFIC COMMUNITY.
THERE WERE 56 GLYCOPROGRAM
SOURCES AND THEY'RE REPRESENTED
IN 153 PEER-REVIEWED
PUBLICATIONS AND THESE WERE THE
MAIN PUBLICATIONS THAT REPORTED
ON THE EXISTENCE OF EACH
RESOURCE.
THIS GIVES SOME METRICS FOR THE
PROGRAM RESOURCES OVER ALL AND
BY THE THREE PROGRAM
INITIATIVES.
OVER ALL, 88% OF THE RESOURCES
WERE DESCRIBED IN AT LEAST ONE
PUBLICATION.
SO RESOURCES FOR THE SYNTHESIS
INITIATIVE HAD MORE COMPARED TO
RESOURCES DEVELOPED THROUGH THE
TOOLS INITIATIVE.
HOWEVER, THE TOOLS INITIATIVE
RESOURCE MORE LIKELY TO HAVE
WEBSITES ASSOCIATED WITH THEM.
IN TERMS OF IMPARTIALIZATION THE
SYNTHESIS TOOLS WERE MORE LIKELY
TO BE INITIALIZED FROM THE TOOL
INITIATIVE AND THE INFORMATICS
RESOURCE WAS THE TOOL WITH TWO
PUBLICATIONS AND A WEBSITE
ASSOCIATED WITH IT.
THIS FOCUSES ON RESEARCHERS
LEARN ABOUT THE PROGRAM AND ITS
RESOURCES.
THE DATA WAS DRAWN FROM THE 20
INTERVIEWS WITH GLYCOSPECIALISTS
AND G STANDS FOR GLYCOSCIENTISTS
AND WE INTERVIEWS 15
NON-SPECIALISTS AND FIVE
GLYCOSCIENTISTS.
THIS TABLE SUMMARIZES DATA FROM
THE INTERVIEWS ON HOW RESOURCES
WERE DISSEMINATED.
THE MAJORITY FOUND OUT ABOUT THE
RESOURCES THROUGH CONNECTIONS
WITH COLLABORATORS AND OTHER
COLLEAGUES.
CONFERENCES AND MEETINGS WERE
ANOTHER WAY TO DISSEMINATE
INFORMATION ABOUT THE PROGRAM AS
WELL AS WEBINARS AND WORKSHOPS
PUT ON BY THE PROGRAM AND MANY
INTERVIEWEES MENTIONED E-MAIL
FROM NIH WAS A MEANS OF LEARNING
ABOUT THE PROGRAM.
SOME OF THE NON-SPECIALISTS
LEARNED ABOUT THE PROGRAM
THROUGH THE PROGRAM'S WEBSITE
AND IT TURNS OUT PUBLICATIONS
ALONE WERE NOT AS FREQUENTLY
MENTIONED AT THE MECHANISM FOR
LEARNING ABOUT THE PROGRAM AND
RESOURCES.
AND NOW TO ANSWER THE SECOND
QUESTION, HOW AND TO WHAT EXTENT
WERE SCIENTISTS USING THE
RESOURCES DEVELOPED BY THE
PROGRAM.
THIS TABLE PROVIDES INFORMATION
ABOUT THE ARTICLES THAT CITED
THE PROGRAM'S RESOURCES.
OVER ALL THERE WERE CITATIONS OF
THE PROGRAM'S RESOURCES AND OF
THOSE 2800 WERE UNIQUE
CITATIONS.
EARLIER, SINCE MANY AUTHORS
CITED THE PROGRAM RESOURCES IN
THE INTRODUCTION SECTION WE
MEASURED IT AN AWARENESS OF THE
RESOURCES.
THE RATIO WAS 1.4 WHICH WAS AN
ABOVE AVERAGE RESOURCE NOTATION
AND THE INFORMATICS RESOURCE HAD
THE HIGHEST RATIO OF THE
INITIATIVES WITH AN RCR OF 4.9.
IN THIS CHART SHOWS THE CITATION
FOR THE PROGRAMS RESOURCE
PUBLICATIONS.
SO THE CITATION PROVIDES
INFORMATION SIMILAR TO THE
RELATIVE CITATION RATIO.
AND THE CHART THE ORANGE LINE
REPRESENTS THE EXPECTED
DISTRIBUTION FOR THE
PUBLICATIONS.
YOU CAN SEE HERE 40% OF THE
PROGRAMS RECENT PUBLICATIONS
WERE IN THE 81st PERCENTILE AND
84 WERE IN THE CITED AND THEY
HAD MORE THAN EXPECTED IN THE
UPPER PERCENTILES.
WE'RE SEEING ABOVE AVERAGE
CITATION FOR THE PROGRAM.
AND HERE WE HAVE THE
DISTRIBUTION OF PUBLICATIONS
OVER TIME AND BY EACH OF THE
PROGRAMS INITIATIVES.
BETWEEN 2015 AND 2022 THE NUMBER
OF PUBLICATIONS INCREASED EACH
YEAR FOR EACH INITIATIVE.
WE WERE INTERESTED IN
UNDERSTANDING WHAT FIELD OF
RESOURCES WERE BEING CITED AS A
PROXY FOR DIFFERENT FIELDS OF
RESEARCH.
CHEMISTRY FIELD WERE THE MOST
POPULAR AND FOUND SOME WERE
PUBLISHED AND FELT LIKE
DEVELOPMENT BIOLOGY, IMMUNOLOGY
AND VIROLOGY.
AND HERE WE HAVE A MAP DEPICTING
THE DISTRIBUTION OF THE AUTHORS
IN THE CITING PUBLICATIONS.
THE U.S. AND CHINA WERE THOSE
THAT MOST FREQUENTLY CITE THE
PROGRAM'S RESOURCES BUT THERE
ARE ALSO AUTHORS FROM EUROPE,
SOUTH AMERICA AND AUSTRALIA.
ONE OF THE MAIN QUESTIONS THAT
DROVE OUR DESIRE TO DRIVE THE
GLYCOSCIENCE PROGRAM WAS TO
UNDERSTAND NON SPECIALISTS USING
THE RESOURCES DEVELOPED BY THE
PROGRAM.
FOR OUR RANDOM SAMPLE OF THE
2800 CITING PUBLICATIONS, THE
CORRESPONDING AUTHOR WAS
CATEGORIZED AS GLYCOSCIENTIST OR
NON SPECIALIST.
HERE WE SEE ABOUT TWO-THIRDS OF
THE CORRESPONDING AUTHORIZE OF
THE CITING PUBLICATIONS WERE
NON-SPECIALISTS.
INDICATING A GOOD LEVEL OF
AWARENESS AMONG NON SPECIALISTS
CITED BY THE COMMUNITY.
THIS TABLE SHOWS THE CITING
PUBLICATIONS OR WHETHER THE
CORRESPONDING AUTHOR WAS A
GLYCOSCIENTIST AND WE FOUND
NON-SPECIALISTS WERE MORE LIKELY
TO CITE RESOURCES FROM THE TOOLS
INITIATIVE AND WERE LESS LIKELY
TO CITE RESOURCES GENERATED FROM
THE SYNTHESIS INITIATIVE.
SO HERE WE LOOKED AT THE BREAK
DOWN OF THE SCIENTIFIC FIELDS
WHETHER THE CORRESPONDING AUTHOR
WAS A GLYCOSCIENTISTS OR NOT.
THEY WERE MORE LIKELY TO PUBLISH
IN THE FIELD OF CHEMISTRY AND
NON-SPECIALISTS WORE MORE LIKELY
TO PUBLISH IN THE FIELD OF
CLINICAL MEDICINE AND PUBLISH IN
THE FILED OF BIO MEDICAL
RESEARCH.
TO GET A SENSE OF HOW THE
PROGRAM'S RESOURCES WERE BEING
USED, THE INTERVIEW GAVE CONTEXT
WE COULDN'T GET FROM THE DATA.
FROM THE 20 INTERVIEWEES THERE
WERE FOUR SCIENTIFIC FIELDS
REPRESENTED.
AND THE INTERVIEWEES USED THE
PROGRAM RESOURCES IN A VARIETY
OF WAYS INCLUDING LABEL AMINO
ACIDS AND I'D -- IDENTIFYING
MODIFICATIONS AND DISEASE.
THE NEXT SLIDES GIVE A SENSE HOW
THE INTERVIEWEES FELT ABOUT THE
UTILITY OF THE RESOURCE.
ALMOST ALL THE INTERVIEWEES WERE
INNOVATIVE AND HIGH QUALITY AND
MOST FELT THEY WERE RIGOROUS.
AND HERE ARE A COUPLE TO
REPRESENTATIVE THAT PERSPECTIVE.
ONE INTERVIEWEE FELT THE METHODS
RESOURCES AND ANALYTIC TOOLS
GENERATE FROM THE PROGRAM WERE
INNOVATIVE.
THE INTERVIEWEES SAID THEY MADE
POSSIBLE RESEARCH AND WOULD NOT
HAVE BEEN ABLE TO DO OTHER WISE.
ONE MENTIONED A COMPUTATIONAL
METHODS RESOURCE ALLOWED HOME TO
SCREEN A LARGE NUMBER OF
MOLECULES FOR RESEARCH AND MANY
SAID PROGRAM HELPED SHAPE THEIR
RESEARCH FOCUS.
ONE RESEARCHER SAID THEY'RE
INTERACTIONS WITH THE
GLYCOSCIENCE COMMUNITY CHANGE
THE FOCUS OF THEIR LAB AND HALF
NON SPECIALISTS FELT IT IMPROVED
THEIR KNOWLEDGE AND MANY CALLED
THE RESOURCES EXPEDITING AND
THERE WERE CONCEPTS DURING THE
INTERVIEWS.
AND IF IT DID NOT COME UP DURING
THE INTERVIEW IT DIDN'T MEAN
THEY DISAGREE WITH THE CONCEPT
BUT JUST MAY NOT HAVE COME UP.
THAI AS THEY DISCUSS CHALLENGES
ENCOUNTERED INCLUDING THE TOOLS
BEING NOT TAILORED ENOUGH FOR
THEIR NEEDS OR REQUIRING EFFORTS
TO MEET THEIR NEEDS.
THE ONE INTERVIEWEE MENTIONED IT
TOOK A LOT OF WORK AND TRIAL AND
ERROR TO BE ABLE TO USE AN ASSAY
THAT WAS DEVELOPED BY THE
PROGRAM.
AND OUR FINAL QUESTION TO WHAT
EXTENT WAS THE PROGRAM
SUCCESSFUL IN MAKING
GLYCOSCIENCE RESEARCH RESOURCES
AVAILABLE TO THE COMMUNITY?
ONE CONCEPT THAT CAME UP WAS THE
IMPORTANCE OF COLLABORATION WITH
GLYCOSCIENCISTS AND SOME FELT IT
WASN'T ENOUGH TO READ PROPERLY
BUT BENEFIT FROM A MORE
COLLABORATIVE RELATIONSHIP.
ONE INTERVIEWEE MENTIONED THEY
WOULDN'T HAVE BEEN ABLE TO START
THEIR RESEARCH WITHOUT THE
COLLABORATION.
AND THEN THE INTERVIEWEES
DISCUSSED BARRIERS TO ADOPTING
THE RESOURCES AND SOME WERE TOO
DIFFICULT FOR NON-SPECIALISTS TO
USE AND FUND COLLABORATION TO
USE THE RESOURCES.
SOME FELT THERE WASN'T ENOUGH
TIME OR MONEY USE THE RESOURCES
ADEQUATELY.
WE ALSO WANTED TO ASSESS WHAT
THE FELT THE IMPACT OF THE
PROGRAM'S RESOURCES WERE ON THE
FIELD OF GLYCOSCIENCE.
DURING THE INTERVIEWS WE ASKED
THEM ABOUT THE PROGRAM'S
CONTRIBUTION TO THE FIELD.
MOST INTERVIEWED FELT THE
PROGRAM CREATED VALUABLE TOOLS
THAT WOULD EXPAND THE FIELD AND
ALLOWING SCIENCES TO MEASURE
THINGS THEY COULD NOT PREVIOUSLY
AND ENABLE MORE STUDY OF
GLYCOSCIENCE.
IN ASKING HOW IT MAY IMPACT
FUTURE FUNDING FOR THE RESOURCE
THEY FEEL IT CAN BE A BASIS TO
APPLY FOR FUTURE FUNDING.
ONE MENTIONED PLANS TO SUBMIT A
GRANT TO NIH USING TOOLS
DEVELOPED BY THE PROGRAM.
OTHER MENTIONED THE RESOURCES
PROVIDED PRELIMINARY DATA TO
SUPPORT FUTURE PROPOSALS.
THEN MOVING TO THE ANALYSIS.
ONE LIMITATION IS WE ONLY
INTERVIEWED 20 STAKEHOLDERS.
IT'S POSSIBLE THEY'RE NOT
GENERALIZABLE TO ALL THE
STAKEHOLDERS WHO USED THE
RESOURCES.
AND THE INTERPRETABILITY OF THE
DATA WAS LIMITED SINCE THE
CITATION IS MORE OF AN AWARENESS
OF THE PROGRAM'S RESOURCES
RATHER THAN UTILIZATION OF THE
PROGRAM'S RESOURCES.
ANOTHER LIMITATION IS THE
ANALYSES COMPARED GLYCOSCIENCE
PEOPLE TO NON IS IT'S POSSIBLE
THE FINDING NOT GENERALIZABLE TO
THE CORRESPONDING AUTHORS.
AND TO SUMMARIZE THE TAKEAWAYS
FROM THE EVALUATION, THE PROGRAM
WAS SUCCESSFUL AT CREATING
RIGOROUS RESOURCES TO HOW
RESEARCH WAS CONDUCTED.
THE RESOURCES WERE REPORTED TO
IMPROVE THE GLYCOSCIENCE
KNOWLEDGE OF NON SPECIALISTS AND
RESOURCES ARE CONSIDERED
VALUABLE AND HAVE THE POTENTIAL
TO EXPAND THE GLYCOSCIENCE.
WE ALSO FOUND COLLABORATIONS
WERE IMPORTANT FOR ENHANCING THE
USABILITY OF THE PROGRAM'S
RESOURCES SINCE THE CHALLENGE OF
SOME OF THE RESOURCES COULD
OTHERWISE HINDER ADOPTION.
AND HERE'S ACKNOWLEDGEMENTS.
I'D LIKE TO THANK THE
RESEARCHERS FOR THEIR
PARTICIPATION AND THANK THE TEAM
FOR CONDUCTING THE EVALUATION
AND LIKED TO THANK THE BRANCH
AND THE OVERSIGHT OF THE
EVALUATION.
THANK YOU.
>> THANKS, BRIONNA.
I THANK YOU ALL FOR YOUR TIME.
>> WE'RE AT TIME BUT I WANT TO
SEE IF VERY QUICKLY ANYONE HAS
ANY QUESTIONS.
KENT, I SEE YOUR HAND AND THEN
GARY.
>> GREAT JOB.
TWO QUICK QUESTIONS.
ONE, WHAT NOW?
AGAIN, THIS GUYS TO THE
SUSTAINABILITY OF WHAT HAS BEEN
BUILT AND HOW RESEARCHERS
CONTINUE TO ACCESS IT NOW THE
COMMON FUNDING IS DONE.
TWO, I'M IMPRESSED BY EVALUATION
PROCESS AND THE USE OF RIPPLE
EFFECT.
IS THAT GOING TO BE USED MOVING
FORWARD FOR COMMON FUND PROGRAM
AND IT WAS THOROUGH AND
ENCOURAGE YOU DO SO.
>> I'LL TRY TO ANSWER QUICKLY.
THE WORK WAS DESIGN TO BE
DISSEMINATED AS IT WAS DONE.
THAT HAS OCCURRED IN LARGE PART.
THE ONLY PART THAT NEEDED NIH
SUSTAINABILITY WAS THE
INFORMATICS AND IT'S NOW GM'S
AND GRADUATED FROM THE PROGRAM.
IN TERMS OF RIPPLE EFFECT, WE
WANTED TO DO EVALUATION BECAUSE
THE PROGRAM WAS A LITTLE BIT
USUAL AND WANTED TO LEARN HOW IT
WORKED TO DO THIS PROGRAM.
IT'S A PRETTY EXPENSIVE
UNDERTAKING TO DO THIS LEVEL OF
EVALUATION.
I DON'T THINK WE CAN DO THIS FOR
EVERYTHING BUT WE WANT TO TRY DO
MORE OF IT.
>> I RAN THE OFFICE AT NIAID
THAT MANAGED THE PROJECT WITH
RIPPLE AND IT'S A LONG
UNDERTAKING AND RESOURCE
INTENSIVE IT'S TIME INTENSIVE AS
WELL.
GARY.
>> I'LL ASK A QUICK QUESTION AND
THAT'S SUSTAINABILITY OF THE
INFORMATICS.
WE HEARD ABOUT TWO OF THEM FROM
YOUR PRESENTATION AND THE ONE
BEFORE, DO THEY TALK TO EACH
OTHER?
IF I GO INTO ONE AND I'M ASKING
ABOUT A GENE AND THE JEAN HAS
INFORMATION ABOUT THE STRUCTURE
AND DISEASES.
DO I ALSO GET A LINK IT'S
GLYCOPROTEIN AND SEE THE
CARBOHYDRATES, DO THEY TALK TO
EACH OTHER?
>> YES, THEY'RE
CROSS-REFERENCED.
>> THANKS.
>> ANY OTHER QUESTIONS?
NOT SEEING ANY HANDS, THANKS
DOUG AND BRIONNA FOR THE GREAT
PRESENTATION.
OKAY.
I KNOW WE HAVE WE ARE OVER TIME
BUT WANTED TO GIVE A MOMENT, IF
YOU WILL, TO THE FOLKS THAT ARE
DEPARTING THE COUNCIL.
IF THERE'S ANYTHING YOU WANTED
TO SAY IN YOUR PARTING LAW FEW
MINUTES OF BEING ON THE COUNCIL
OF COUNCILS, NOW IS YOUR TIME.
>> I'LL MAKE ONE QUICK COMMENT.
THE CONVERSATION WE HAD
YESTERDAY AROUND HOW THE COUNCIL
WORKS AND HOW IT'S STRUK --
STRUCTURED AND I'VE BEEN ON THE
COUNCIL SIX YEARS NOW AND DON'T
REMEMBER A CONVERSATION LIKE
THAT AND THAT WAS REALLY
IMPORTANT AND I HAVE ENJOYED
WORKING WITH THE DIFFERENT
MEMBERS OF THE COUNCIL.
HAVE LEARNED A LOT BUT I THINK
OUR IMPACT COULD HAVE BEEN
GREATER IF WE WOULD HAVE HAD
CONVERSATIONS LIKE THAT SO WE
COULD BECOME BETTER ALIGNED WITH
WHAT THE GOALS AND ASPIRATIONS
ARE AND GET TO KNOW EACH OTHER A
LITTLE BIT BETTER AROUND
CONVERSATIONS LIKE THAT AND THEN
ACTUALLY FOLLOW THROUGH WITH DO
THINGS DIFFERENTLY BECAUSE I
THINK THE COUNCIL LIKE
EVERYTHING NEEDS TO EVOLVE AND I
FEEL LIKE THERE WERE LOTS OF
TIME WHERE I WAS ABLE TO HAVE
INPUT AND IMPACT AND OTHER TIMES
WHERE THERE WERE THINGS I REALLY
FELT WE COULD HAVE ADDED AND
WEREN'T ABLE TO DO BECAUSE OF
THE TIME CONSTRAINTS AND
STRUCTURE.
I ENCOURAGE YOU TO SEEK THE
GUIDANCE OF THE COUNCIL GOING
FORWARD.
>> THANK YOU.
RICK.
>> I CONCUR 100%.
I HAVE A PERSONAL ONE.
I'VE BEEN DOING THIS STUFF FOR
60 YEARS AND THIS IS PROBABLY MY
LAST HURRAH WITH ANY NIH
ANYTHING, MAYBE NOT BUT I
SUSPECT SO AND WANT TO THANK
EVERYONE AND WE'RE LIVING AND
WORKING IN A GOLDEN ERA OF BIO
SCIENCE THAT HAS BENEFITTED
GREATLY FROM THE STEWARDSHIP OF
THE NIH AND PARTICULARLY THE
PROGRAM LEADERS AND DIRECTORS
AND OTHER OFFICERS ARE A
DEDICATED GROUP OF PEOPLE AND
I'VE WORKED WITH THEM FOR OVER
40 YEARS AND ARE JUST
SPECTACULAR AND MANY THANKS TO
EVERYONE.
>> GREAT.
HAPPY?
>> IT'S BEEN A TRUE PRIVILEGE
SERVING ON THE COUNCIL.
I REMEMBER I SAT NEXT TO GARY
THE FIRST DAY AND THE FIRST TO
WELCOME ME WAS THE LATE
DR. EDITH MITCHELL AND
APPRECIATED THE RELATIONSHIPS
AND LEARNED ABOUT FASCINATING
SCIENCE AND IT WAS A SUCH A
PRIVILEGE TO WORK WITH
DR. FRANCIS COLLINS' VISION AND
ACTION DURING A VULNERABLE TIME
IN HISTORY, THE GLOBAL PANDEMIC,
RACIAL RECKONING SO PLEASED THAT
ADDRESSING HEALTH DISPARITIES IS
A PRIORITY OR CROSS-CUTTING
THEME AND WILL BE SUSTAINED BUT
BY THE VOICES I'VE HEARD FROM
THE NEW COUNCIL MEMBERS.
>> THANK YOU SO MUCH.
I APPRECIATE ALL OF YOUR SERVICE
ON THIS COUNCIL AND I KNOW THE
FOLKS ROTATING OFF.
WON'T HAVE AS MUCH OPPORTUNITY
TO WORK TOGETHER BUT WILL FIND
OTHER MECHANISM TO DO SO BUT
THANK YOU ALL AGAIN FOR A GREAT
TWO DAYS AND THE EXTRA TIME THAT
YOU'VE GIVEN AND THE FLEXIBILITY
OVER THE LAST TWO DAYS TOO.
IT'S BEEN A GREAT AND FUN FIRST
COUNCIL MEETING FOR ME.
JUST AS A REMINDER NEXT COUNCIL
OF COUNCILS IS SCHEDULED FOR MAY
30 AND 31 AND WE'LL HAVE ONE IN
SEPTEMBER WHICH WE'LL ALL BE IN
PERSON AND LOOK FORWARD TO
SEEING YOU ALL IN MAY.
TAKE CARE.