WELCOME TO THE SECOND DAY OF
THE ADVISORY COUNCIL TO THE
DIRECTOR MEETING.
APPRECIATE EVERYBODY RETURNING
AFTER WHAT WAS A RATHER LONG DAY
YESTERDAY.
TODAY WILL BE A LITTLE BIT MORE
KIND TO YOU IN THAT IT'S NOT AS
LONG BUT THE TOPICS ARE
CRITICALLY IMPORTANT.
EVERY TOPIC WE BRING BEFORE YOU
IS CRITICALLY IMPORTANT, AND
SEVERAL OF THE THINGS THAT WE
HAVE QUEUED UP THIS MORNING ARE
NEW, BUT OTHERS ARE CHECK-INS
WITH ONGOING EFFORTS.
AND SO LET ME JUST CHECK TO
SEE -- OKAY, TARA, IF YOU COULD
TEST THE ALARM, WHICH WE
REMARKABLY ONLY HAD TO USE ONCE
YESTERDAY AND NO ONE HEARD IT,
AND IT WAS FOR ME, SO THAT'S WHY
I DIDN'T HEAR IT, I'M SURE, BUT
GO AHEAD, WHY DON'T YOU TEST THE
NEW IMPROVED ALARM.
>> WE'LL SEE.
I FOUND A SITE THAT YOU CAN
CHANGE THE SOUND, SO I MIGHT
JUST TRY TO KEEP EVERYONE ON
THEIR TOES AND HAVE A DIFFERENT
SOUND EACH TIME.
BUT HERE'S WHICH ONE I'M
STARTING WITH.
[NOISE]
>> THERE YOU GO.
SOUNDS LIKE A PLATE CRASHING IN
THE DISTANCE.
OKAY.
VERY GOOD.
THANK YOU.
SO LET'S START OFF WITH
DR. MARIE BERNARD, CHIEF OFFICER
FOR SCIENTIFIC WORKFORCE
DIVERSITY.
AND SHE WILL UPDATE THE COUNCIL
ON PROGRESS TOWARDS THE
STRATEGIC PLAN RELATED TO
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY.
AS I'M SURE YOU WILL LEARN FROM
HER PRESENTATION, THIS IS VERY
MUCH A TEAM SPORT INVOLVING
MANY, MANY, MANY PEOPLE ACROSS
THE NIH CAMPUS, AND SO MARIE,
PLEASE, IF YOU WILL.
>> THANK YOU VERY MUCH.
SO YES, I AM PRIVILEGED TO
PRESENT THE DIVERSITY, EQUITY,
INCLUSION AND ACCESSIBILITY, OR
DEIA STRATEGIC PLAN FRAMEWORK
THAT IS ENVISIONED FOR NIH.
THIS HAS BEEN GENERATED AS A
RESULT OF TWO INPUTS.
FIRST REPORT LANGUAGE IN THE
FISCAL YEAR '21 NIH BUDGET THAT
CALLED FOR THE DEVELOPMENT OF
THE DIVERSITY, EQUITY AND
INCLUSION PLAN TO INCLUDE SHORT
AND LONG TERM GOALS TO ADDRESS
RACIAL, ETHNIC AND GENDER
DISPARITIES OF NIH, AND TO
IDENTIFY AND ADDRESS BARRIERS TO
ACCESS TO NIH FUNDING FOR
RESEARCHERS IN HEALTH
DISPARITIES.
THE LANGUAGE ACTUALLY CALLED FOR
THIS TO BE IN PLACE WITHIN
180 DAYS OF THE LAW BEING
PASSED, THE LAW BEING PASSED
DECEMBER OF 2020.
WE WERE ABLE TO NEGOTIATE WITH
CONGRESS A LONGER TIMELINE, AND
IT'S EXPECTED THAT WE WOULD
SUBMIT THAT PLAN BY AROUND THIS
TIME.
SHORTLY THEREAFTER, WITH THE
BIDEN ADMINISTRATION COMING INTO
PLACE, THERE WAS EXECUTIVE ORDER
14035, DIVERSITY, EQUITY,
INCLUSION AND ACCESSIBILITY IN
THE FEDERAL WORKFORCE THAT
CALLED FOR EVERY FEDERAL ENTITY
TO DEVELOP A DEIA PLAN.
SO THIS PLAN THAT WE ARE
BRINGING FORWARD TO YOU IS MEANT
TO ADDRESS BOTH OF THESE GOALS.
THERE IS A GOVERNMENT-WIDE DEIA
PLAN THAT WAS RELEASED
NOVEMBER 23RD THAT PROVIDES A
ROAD MAP FOR IMPLEMENTING THE
EXECUTIVE ORDER THAT CHARGED
AGENCIES SUCH AS HHS TO DEVELOP
A PLAN BY MARCH 23RD, AND HHS
DID RELEASE A PLAN AS OF
MARCH 23RD.
WE AS AN OPERATING DIVISION
WITHIN HHS ARE GOING TO MEET OUR
GOAL OF GETTING OUR PLAN
RELEASED THIS SUMMER.
SO WHERE ARE WE?
WE STARTED LAST SUMMER WITH THE
PLANNING GROUP AND A WORKING
GROUP YOU WILL SEE SHORTLY,
THERE ARE 100-PLUS PEOPLE
WORKING ON THIS.
WE DEVELOPED A STRATEGIC PLAN
FRAMEWORK.
EARLIER THIS CALENDAR YEAR, WE
SOUGHT PUBLIC INPUT WITH AN RFI
AND WITH A PUBLIC WEBINAR.
WE'RE NOW AT THE POINT OF
REFINING THE FRAMEWORK, PUTTING
CONTENT IN, BEGINNING DRAFTING
THE PLAN.
HOPING WE WOULD HAVE THIS
APPROVED, REVIEWED AND RELEASED
THIS SUMMER.
THERE ARE A HUNDRED
REPRESENTATIVES FROM ALL 27
INSTITUTES, CENTERS AND MULTIPLE
OFFICE OF THE DIRECTOR GROUPS.
I'M REALLY PRIVILEGED TO CO-LEAD
THIS WITH MY COLLEAGUES,
DR. LITTLE, ACTING DIRECTOR OF
THE OFFICE OF EQUITY, DIVERSITY
AND INCLUSION, MISS JULIE BERKO,
DIRECTOR OF THE OFFICE OF HUMAN
RESOURCES, AND WE ARE REALLY,
REALLY GRATEFUL TO THIS PROCESS
BEING MANAGED BY THE DIVISION OF
COORDINATION, PLANNING AND TRA
TEE JIK INITIATIVES, VERY
SPECIFICALLY FACILITATED BY
DIRECTOR OF THE OFFICE OF
EVALUATION PERFORMANCE AND
REPORTING, REALLY THE ENGINE
KEEPING THIS PROCESS ON BOARD
AND WE'RE VERY GRATEFUL TO THEM.
THERE IS THE STEERING COMMITTEE,
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY WORKING GROUP THAT
WILL BE RESPONSIBLE FOR THE
IMPLEMENTATION OF THE PLAN.
THIS IS A GROUP THAT WAS
PREVIOUSLY KNOWN AS SIMPLY THE
DIVERSITY WORKING GROUP, AND DRM
WITH A BROADER SCOPE OF
RESPONSIBILITIES TO HELP US TO
BE ACCOUNTABLE AND RESPONSIBLE
HERE.
AND THEY'VE ALREADY HAD A CHANCE
TO LOOK AT THIS FRAMEWORK AND TO
SUGGEST APPROPRIATE ACTIVITIES
TO BE INCLUDED IN IT.
SO WHAT ARE THE OVERARCHING
PRINCIPLES FOR THIS?
WE ARE LOOKING TO COMMUNICATE
VISION AND ASPIRATIONS FOR ALL
OF NIH, SO WE ARE LOOKING AT A
VERY BROAD SCOPE FOR ALL OF THE
VARIOUS THINGS GOING ON AT NIH
IN THE DEIA SPACE.
WE'RE LOOKING TO ARTICULATE OUR
DEFINITIONS, BEING VERY MINDFUL
OF WHAT'S COME FROM THE
EXECUTIVE ORDERS AND OTHER
SOURCES.
WE'RE LOOKING TO PROVIDE
EXAMPLES OF ACCOMPLISHMENTS, TO
CONVEY PRIORITY FOR THE NEXT
FIVE YEARS, AND TO PROVIDE BROAD
PRIORITIES AND SAMPLE
ACTIVITIES.
WE WILL WANT TO HOLD OURSELVES
ACCOUNTABLE WITH MEASURES OF
PROGRESS AND WE'RE GOING TO LOOK
TO YOU TO ALSO HOLD US
ACCOUNTABLE.
WE'VE GATHERED INPUT INTERNALLY
AND FROM EXTERNAL STAKEHOLDERS
AND INTEND TO CONTINUE TO GATHER
THEM, AND IN PARTICULAR, THIS IS
BROUGHT TO THE ACD AT THIS TIME
FOR YOUR OFFICIAL INPUT.
SO THE SCOPE OF THE PLAN,
ARTICULATING NIH'S VISION FOR
STRENGTHENING DEIA, CAPTURING
ACTIVITIES THAT THE NIH
WORKFORCE WILL UNDERTAKE TO MEET
THE VISION OF THE PLAN, AND
HARMONIZING WITH THE NIH-WIDE
STRATEGIC PLAN FRAMEWORK.
SO MUCH OF WHAT WE WILL BE
PRESENTING WILL LOOK FAMILIAR
BECAUSE IT'S ORGANIZED AROUND
ACCOMPLISHMENTS, NEEDS,
OPPORTUNITIES AND CHALLENGES.
WE HAVE THREE KEY AREAS WHERE
THERE IS THAT FOCUS.
OUR MISSION AND VISION
STATEMENTS ARE TO EMBRACE,
INTEGRATE AND STRENGTHEN DEIA
ACROSS ALL NIH ACTIVITIES AND
SERVICE TO THE NIH VISION.
OUR VISION IS TO BE A
PEOPLE-CENTERED ORGANIZATION,
REPRESENTATIVE OF OUR NATION'S
DIVERSITY, WHERE ALL PEOPLE FEEL
A SENSE OF BELONGING AS THEY
ADVANCE THE NIH MISSION.
SO WHAT ARE OUR THREE
OBJECTIVES? TO GROW AND SUSTAIN
DEIA THROUGH STRUCTURAL AND
CULTURAL CHANGE.
TO IMPLEMENT ORGANIZATIONAL
PRACTICES TO CENTER AND
PRIORITIZE DEIA IN THE
WORKFORCE, AND TO ADVANCE DEIA
THROUGH RESEARCH.
SO THIS DOES LOOK A LITTLE
DIFFERENT THAN YOUR STANDARD NIH
STRATEGIC PLAN BECAUSE IT PUTS
THE RESEARCH LAST, BUT WE
THOUGHT IT IMPORTANT, GIVEN THAT
THIS IS SO PEOPLE-FOCUSED, THAT
THE OBJECTIVES WITH REGARDS TO
PEOPLE WHO COME BEFORE THAT AND
EVEN BEFORE THAT, LOOKING AT THE
ISSUE OF STRUCTURAL AND CULTURAL
CHANGE.
THAT'S A LITTLE DIFFERENT FROM
WHAT EVEN PEOPLE SAW IN OUR
FRAMEWORK PREVIOUSLY.
AS I MENTIONED, THIS IS AN
UMBRELLA APPROACH COVERING
MULTIPLE INPUTS IN TERMS OF
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY.
SO SOME EXAMPLES BEING THE
NATIONAL INSTITUTE OF MINORITY
HEALTH AND HEALTH DISPARITIES,
HEALTH DISPARITY STRATEGIC PLAN,
WE'RE GOING TO GO VERY HEAVILY
IN TERMS OF THAT COMPONENT OF
THE RESEARCH.
THE TRIBAL HEALTH RESEARCH PLAN,
THE CHIEF OFFICE FOR SCIENTIFIC
DIVERSITY STRATEGIC HEALTH PLAN,
THEY'RE ALL CONSIDERED
COMPONENTS OF THIS, CONTRIBUTORS
TO THIS, AND BEYOND.
BECAUSE INSTITUTE AND CENTERS
ARE DOING A NUMBER OF THINGS AS
WELL.
SO GOING CAREFULLY THROUGH OUR
VARIOUS OBJECTIVES, SOME
OBJECTIVES IN TERMS OF CHANGING
CULTURE WOULD BE STEWARDSHIP.
WE HAVE A GOAL TO FOSTER A
CULTURE OF GOOD SCIENTIFIC
STEWARDSHIP IN ENHANCING DEIA IN
THE SUPPORT OF RESEARCH AND TO
PROVIDE COORDINATION AND
OVERSIGHT TO PROMOTE A CULTURE
THAT UPHOLDS DEIA PRINCIPLES.
WE'RE ALSO LOOKING FOR EXTERNAL
PARTNERSHIPS AND ENGAGEMENTS BY
IDENTIFYING THE NEEDS OF
EXTERNAL STAKEHOLDERS AND
DEVELOPING INTENTIONAL
RELATIONSHIPS FOR THE PURPOSE OF
BUILDING MEANINGFUL ENGAGEMENT.
WE'RE LOOKING TO FOSTER EXTERNAL
PARTNERSHIPS THAT FURTHER
ENHANCE DEIA AT NIH.
WE ALSO AS I SAID ARE LOOKING TO
BE ACCOUNTABLE SO THAT YOU CAN
HAVE CONFIDENCE IN WHAT IT IS
THAT WE'RE DOING.
HOW WILL WE DO THAT?
WE HAVE A GOAL OF DEVELOPING AND
IMPLEMENTING STEPS TO ENGAGE AND
BE RESPONSIVE TO THE INL TERNL L
AND EXTERNAL NIH COMMUNITY ABOUT
PRACTICES THAT FACILITATE DEIA.
WE'RE LOOKING TO ENSURE
TRANSPARENCY OF ASSESSMENTS AND
EVALUATIONS OF NIH ACTIONS TO
DEMONSTRATE PROGRESS, AND TO
ADDRESS ANY GAPS THAT MAY BE
IDENTIFIED.
WE'RE LOOKING TO CONSISTENTLY
COMMUNICATE AND EXPLAIN HOW TO
IMPLEMENT POLICIES AND PRACTICES
THAT UPHOLD A WORK ENVIRONMENT
AND CULTURE THAT IS SAFE,
RESPECTFUL, ACCESSIBLE, AND
DIVERSE.
WE HAVE A GOAL TO FOSTER A
CULTURE OF DEIA THROUGHOUT NIH
PROGRAM MANAGEMENT AND PHYSICAL,
TECHNOLOGICAL AND CULTURAL
INFRASTRUCTURES.
AND WE'RE LOOKING TO DRAW ON
EVIDENCE TO MAKE DECISIONS
REGARDING DEIA ACTIONS TO
INCREASE OUR EFFECTIVENESS AND
EQUITY AND TO ENSURE PROGRAM
INTEGRITY, AND TO MINIMIZE RISK
AND OPERATIONAL FAILURE.
IN TERMS OF THE WORKFORCE,
LOOKING AT THE NIH WORKFORCE,
WE'RE LOOKING TO STRENGTHEN
OUTREACH, RECRUITMENT AND HIRING
EFFORTS TO FACILITATE A DIVERSE
WORKFORCE INCLUSIVE OF
INDIVIDUALS FROM UNDERSERVED
COMMUNITIES, AND WHEN WE GET TO
THE UNITE PRESENTATION, YOU'LL
SEE AN EXAMPLE OF ONE OF THE
THINGS THAT'S BEING DONE IN THAT
DIRECTION.
BUT THERE'S A LOT THAT'S BEING
DONE.
WE'RE LOOKING TO STRENGTHEN
DEVELOPMENT, RECOGNITION, AND
ADVANCEMENT EFFORTS ACROSS NIH.
AND WE'RE LOOKING TO FOSTER A
CULTURE OF DEIA THROUGHOUT OUR
WORKFORCE.
WE ALSO ARE LOOKING OUTWARDLY AT
ADVANCING DEIA AT INSTITUTIONS
SUPPORTED BY NIH THROUGH
RESEARCH CAPACITY BUILDING, BY
UNDERSTANDING THE DEMOGRAPHICS
OF A WORKFORCE AT INSTITUTIONS
SUPPORTED BY NIH TO THE DEGREE
ARROWD BY LAW, AND TO ENCOURAGE
ENHANCEMENT OF DEIA PRINCIPLES
IN RESEARCH ENVIRONMENTS AT NIH
FUNDED INSTITUTIONS.
YOU'LL SEE SOME OF EXAMPLES OF
THAT BOTH WITH THIS DEIA PLAN
AND WITH THE UNITE PRESENTATION.
BUT AGAIN, THERE ARE A LOT OF
ACTIVITIES GOING ON.
IN FACT, IMOWN WE DID A DATA
CALL TO FACILITATE THE
DEVELOPMENT OF THIS FRAMEWORK.
WE GOT 1700 RESPONSES FROM ALL
THE INSTITUTES, CENTERS AND
OFFICES, AND I KNOW GIVEN THE
WAY THAT OUR OFFICE RESPONDED,
THAT ONE OF THOSE RESPONSES
REALLY REPRESENTED MULTIPLE
ACTIVITIES, SO THERE'S A LOT
THAT'S ONGOING, AND YET A LOT
MORE OPPORTUNITY FOR BUILDING
UPON THAT.
IN TERMS OF RESEARCH, WE ARE
LOOKING AT RESEARCH OF THE
WORKFORCE.
EXPANDING RESEARCH TO IDENTIFY
AND REMOVE POTENTIAL BARRIERS TO
IMPLEMENTATION AND EXPANSION OF
PROMISING AND EFFECTIVE DEIA
PRACTICE, POLICIES AND
PROCEDURES, AND EXAMINING HOW
ENHANCING DEIA IN THE BIOMEDICAL
WORKFORCE INFLUENCES THE
ACCOMPLISHMENT OF THE NIH
MISSION.
THEN VERY MUCH OVERLAPPING WITH
WHAT'S INDICATED IN THE PLAN,
PROMOTING RESEARCH TO IDENTIFY
HEALTH DISPARITIES AND EXAMINE
FACTORS THAT DRIVE THESE
DISPARITIES, DEVELOP, ADAPT,
TEST AND DISSEMINATING EFFECTIVE
INTERVENTIONS TO IMPROVE HEALTH
AND REDUCE HEALTH DISPARITIES,
AND PROMOTING CONSIDERATION OF
DEIA INTO ALL NIH SUPPORTED
RESEARCH AND RESEARCH SUSTAIN
BEING ACTIVITIES.
ING
ACTIVITIES.
SO AS I SAID, WE HAD MORE THAN O
YOU ABOUT SEVERAL TIMES AT
PREVIOUS ACD MEETINGS.
AS YOU RECALL, THE INTENT OF
THIS IS TO BUILD CULTURES OF
INCLUSIVE EXCELLENCE AT VARIOUS
ACADEMIC AND RESEARCH
INSTITUTIONS AND SUPPORT THE
RECRUITMENT AND ADVANCEMENT OF
COHORTS OF SCIENTISTS WHO COME
FROM DIVERSE BACKGROUNDS.
THE FIRST INITIATIVE WAS
FIRST -- I'M SAYING FIRST A LOT,
BUT THE FIRST INITIATIVE WAS
RELEASED IN FISCAL YEAR '21 FOR
THE FIRST ROUND OF COMPETITION.
WE WERE ABLE TO SUPPORT SIX
COHORTS AT SEVEN INSTITUTIONS,
AND TO IDENTIFY MORE HOUSE
SCHOOL OF MEDICINE AS THE
COORDINATING AND EVALUATION
CENTER.
THE FISCAL YEAR '22 COMPETITION
IS COMPLETE.
WE HAVE RECOMMENDATIONS FOR
FUNDING THAT ARE BEING
CONSIDERED BY THE STEERING
COMMITTEE AND HOPEFULLY WE'LL BE
ABLE TO MAKE ANNOUNCEMENTS
RELATIVELY SOON.
AND THE FISCAL FISCAL YEAR
'23 COMPETITION IS STILL OPEN
THROUGH JULY.
AT THE CONCLUSION OF THIS, WE
WILL HAVE AT LEAST 14 COHORTS AT
VARIOUS ACADEMIC AND RESEARCH
INSTITUTIONS ACROSS THE COUNTRY,
ABOUT 140 EARLY YEAR FACULTY
FROM DIVERSE BACKGROUNDS ARE
GOING TO BE SUPPORTED TO BECOME
TENURED FACULTY, HOPEFULLY
SUCCESSFUL GRANT RECIPIENTS FROM
NIH.
THERE ARE THE NATIVE AMERICAN
RESEARCH CENTERS HEALTH PROGRAM.
THE PROGRAM SUPPORTS
OPPORTUNITIES FOR CONDUCTING
RESEARCH AND CAREER ENRICHMENT
TO MEET HEALTH NEEDS PRIORITIZED
BY AMERICAN INDIAN AND ALASKA
NATIVE TRIBES OR TRIBALLY BASED
ORGANIZATIONS.
THERE'S THE DISTINGUISHED
SCHOLARS PROGRAM THAT IS AN
INTERNAL NIH PROGRAM AND REALLY
THE BASIS UPON WHICH THE FIRST
INITIATIVE WAS DEVELOPED.
THE DATA FROM THE DISTINGUISHED
SCHOLARS PROGRAM WAS SO
COMPELLING THAT THERE WAS THE
DESIRE TO MAKE THAT COMMITMENT
FROM THE COMMON FUND TO OFFER
THAT OPPORTUNITY OUTSIDE OF NIH.
SO THE DISTINGUISHED SCHOLARS
PROGRAM HAS BEEN IN PLACE FOR
ABOUT FOUR YEARS.
IT'S A PROGRAM WHERE WE BRING IN
COHORTS OF SCHOLARS WHO HAVE AN
INTEREST IN AND A TRACK RECORD
IN DIVERSITY.
THEY MEET ON A MONTHLY BASIS,
GET EXTRA MENTORING, EXTRA
RESOURCES FOR THEIR LABS WITH
THE GOAL OF GETTING THEM TO BE
TENURED SCIENTISTS WITHIN NIH.
WHEN YOU LOOK AT THE DATA,
THERE'S BEEN AN EXPONENTIAL
INCREASE SINCE THE DISTINGUISHED
SCHOLARS PROGRAM HAS BEEN PUT IN
PLACE.
THEN THERE'S THE COMMUNITY
ENGAGEMENT ALLIANCE AGAINST
COVID-19 DISPARITIES.
THIS WAS PUT IN PLACE IN THE
LAST COUPLE OF YEARS.
IT'S AN NIH EFFORT TO ADVANCE
OUTREACH AND ENGAGEMENT IN
ETHNIC AND RACIAL MINORITY
COMMUNITIES THAT HAVE BEEN
DISPROPORTIONATELY IMPACTED BY
THE COVID-19 PANDEMIC.
THE TEAMS HAVE BEEN LEVERAGING
ESTABLISHED RELATIONSHIPS
BETWEEN NIH FUNDED RESEARCHERS
AND LOCAL COMMUNITY LEADERS TO
HELP REACH UNDERSERVED
COMMUNITIES, AND IT'S PROVEN TO
BE VERY EFFECTIVE.
THEN ASSOCIATED WITH OUR OFFICE
OF DIVERSITY, EQUITY AND
INCLUSION, THERE IS WHAT'S
CALLED SPECIAL EMPHASIS
PORTFOLIOS.
THESE ARE GROUPINGS OF EMPLOYEES
WHO IDENTIFY WITH VARIOUS GROUPS
THAT ARE INTEGRAL TO THE SUCCESS
OF THE AGENCY.
THERE IS A STAFF MEMBER WITHIN
EDI WHO SERVES AS A LIAISON WITH
EACH OF THEM.
THE SEVEN GROUPS ARE THE ASIAN
AMERICAN NATIVE HAWAIIAN PACIFIC
ISLANDER GROUP, THE BLACK
AFRICAN AMERICAN GROUP, THE
HISPANIC LATINO GROUP, THE
AMERICAN INDIAN ALASKA NATIVE
GROUP, DISABILITIES GROUP, THE
SEX GENDER MINORITIES GROUP, AND
GROUP OF WOMEN.
THEY ARE REALLY NECESSARY AND
STRATEGIC IN OUR MOVING OUR
AGENDAS FORWARD.
WE ARE GOING TO BE HAVING AN
INTERNAL DEIA TOWN HALL AT THE
END OF THIS MONTH AND THERE WILL
BE REPRESENTATIVES FROM EACH OF
THESE GROUPS SPEAKING TO THE
NEEDS OF THEIR PERSPECTIVE
GROUP.
AND THEN OF COURSE THERE'S THE
NIH UNITED INITIATIVE FOR WHICH
THERE WILL BE AN HOUR AND A HALF
DISCUSSION FOLLOWING THIS.
AND WHICH WAS OFFICIALLY
UNVEILED TO YOU AS A GROUP ON
FEBRUARY 26 OF 2021, WITH THE
AUDACIOUS GOAL OF ENDING
STRUCTURAL RACISM.
YOU WILL GET A CHANCE TO HEAR
HOW THINGS HAVE DEVELOPED SINCE
WE LAST MET.
HOPEFULLY YOU RECOGNIZE THIS
LOVELY ARTWORK FRR THE INCLUSIVE
WORKFORCE RECOGNITION PROJECT.
WHEN THERE IS AN IN-PERSON ACD
MEETING, YOU'LL SEE EVIDENCE OF
THIS ARTWORK IN LOTS OF
DIFFERENT LOCATIONS ON CAMPUS.
THEN THERE ARE DEIA PERFORMANCE
STANDARDS THIS FISCAL YEAR FOR
INSTITUTE AND CENTER DIRECTORS
WHICH HAS BEEN CASCADED DOWN TO
ALL STAFF.
THIS WAS A MANDATE FROM HHS.
THERE WERE A COUPLE OF CRITERIA
THAT HHS PUT FORWARD AS A RESULT
OF NIH UNITE, THERE WERE TWO
MORE BEYOND WHAT WAS MANDATED BY
NIH COMPONENT BEING AN
DEVELOPMENT OF RACIAL EQUITY FOR
EACH INSTITUTE AND CENTER.
YOU'LL GET A CHANCE TO HEAR MORE
ABOUT WHERE THAT STANDS, BUT
THIS PERFORMANCE MANDATE
REQUIRES THAT ALL LEADERSHIP AND
ALL STAFF ADDRESS DEIA ISSUES,
ANTI-HARASSMENT LANGUAGE AND
MORE.
ALSO AS A RESULT OF UNITE, THERE
WAS SOME DEGREE OF INEQUITY THAT
WAS SEEN IN THE AWARDING OF NIH
DIRECTORS' AWARDS.
IN PARTICULAR, SOME JOB
CATEGORIES DID NOT GIVE AS MUCH
OF AN OPPORTUNITY FOR
RECOGNITION AS OTHERS, SO FOR
THIS FISCAL YEAR, THE NIH
DIRECTOR'S AWARDS HAVE BEEN
EXPANDED TO INCLUDE A MISSION
SUPPORT CATEGORY.
THIS IS OBVIOUSLY AN OLD
PICTURE, PRE-PANDEMIC, WHEN
PEOPLE WERE ABLE TO STAND
TOGETHER, AND WE'RE LOOKING AT
FURTHER EXPANSIONS BEYOND THAT
FISCAL YEAR.
AND THEN THERE'S THE WORKPLACE
CLIMATE AND HARASSMENT SURVEY.
AS YOU MAY RECALL IN 2018, THIS
WAS CONDUCTED NIH-WIDE TO GET A
SENSE OF WHERE THINGS STOOD IN
THE CLIMATE AND HOW SUPPORTIVE
IT WAS, PARTICULARLY FOR WOMEN,
FOR INDIVIDUAL REPRESENTED
GROUPS, WE ARE GOING TO HAVE
ANOTHER VERSION OF THE WORKPLACE
CLIMATE CIRCULATED THIS COMING
FALL TO HELP US TO ENGAGE GE
WE ARE AND WHAT WE NEED TO DO
GOING FORWARD.
THE OFFICE OF RESEARCH SERVICES
RECOGNIZED THAT WE NEEDED TO BE
MUCH MORE TRANSPARENT ABOUT
ACCESS TO OUR BUILDINGS, AND
THEY'VE RECENTLY MADE AVAILABLE
ONLINE IN MAPS THAT ARE POSTED
ACROSS THE CAMPUS DATA ABOUT HOW
ONE CAN REASON REASONABLY AR
BUILDINGS.
THAT'S SOMETHING THAT WILL BE
UPDATED ON A REGULAR BASIS AS
NEEDED.
SIMILARLY WE'RE LOOKING AT A
VIRTUAL ENVIRONMENT, AND THE NIH
OFFICE OF THE CHIEF INFORMATION
OFFICER IS WORKING ACROSS HHS,
ACROSS NIH TO LOOK AT WHAT ARE
THE BEST PRACTICES AND WHAT WE
NEED TO DO TO ELIMINATE BARRIERS
VIRTUALLY.
SO THAT WAS A LOT.
AND I HAVE TO JUST SAY THAT WE
ARE SO VERY GRATEFUL TO THE
STAKEHOLDER COMMUNITIES THAT
HAVE BEEN VERY RESPONSIVE TO
THIS, THE NIH LEADERSHIP,
INSTITUTE AND CENTER DIRECTORS,
THE STEERING COMMITTEE, DEIA
WORKING GROUP.
THE PEOPLE WHO WERE REALLY
PUTTING THEIR HEARTS AND SOULS
INTO WRITING THIS.
AND TO YOU, ADVISORY COMMITTEE,
WE'RE REALLY INTERESTED IN WHAT
FEEDBACK YOU CAN PROVIDE US
ABOUT WHAT WE HAVE CONCLUDED
HERE, WHAT WE'VE NOT INCLUDED
HERE, WHAT WE CAN DO TO BE MOST
EFFECTIVE.
SO LOOKING FORWARD TO YOUR
COMMENTS.
>> THANKS, MARIE.
SO TARA, WOULD YOU BE ABLE TO
FACILITATE THE DISCUSSION?
>> ABSOLUTELY.
SO IT LOOKS LIKE DAVID HAS THE
FIRST QUESTION, THEN WE'LL GO TO
CHRISTINA, REBECCA, SHELLEY.
I'LL WORK DOWN THE LINE.
DAVID.
>> THANK YOU.
AND THANK YOU, MARIE.
IMPRESSIVE BREADTH OF WORK, THE
NUMBER OF DIFFERENT THREADS AND
SOURCES THAT HAVE TO GET WOVEN
TOGETHER.
LOOKING AHEAD, I'M SURE YOU HAVE
THOUGHTS, BUT I'M CURIOUS ABOUT
YOUR THOUGHTS ON WHAT IT WILL
TAKE TO ACT ON THE PLAN, IN
TERMS OF -- AND I'M ROUGHLY
THINKING IN TWO BUCKETS BUT YOU
MAYBE HAVE BETTER BUCKETS.
ONE IS, THERE ARE THINGS THAT
GET PEOPLE TO SHIFT THEIR
ATTENTION OR CHANGE THE WAY
THEY'RE DOING SOMETHING.
I'D SAY SOMETHING LIKE INCLUDING
IN PERFORMANCE OBJECTIVES FOR
EVERYBODY, PAY ATTENTION TO
THIS, AND THAT'S AN IMPORTANT
CATEGORY.
THERE ARE OTHER THINGS THAT ARE
GOING TO TAKE PROBABLY NET NEW
DEDICATED RESOURCES, AND I'M
CURIOUS YOUR THOUGHTS ON THE
SCOPE AND SIZE AND PROCESS FOR
THAT.
>> IT'S AN EXCELLENT QUESTION
AND SOMETHING WE'VE BEEN TALKING
ABOUT EXTENSIVELY AS WE'VE MET
EVERY OTHER WEEK WITH EITHER THE
CO-CHAIRS OR WITH THE FULL
100-PERSON GROUP, BECAUSE MUCH
OF WHAT WE ARE LOOKING AT IS
ULTIMATELY CULTURE CHANGE.
CULTURE CHANGE TAKES TIME, IT
TAKES INTELLECTUAL EFFORT, AND
IT DOES TAKE INVESTMENT OF
RESOURCES, AND THUS IT'S GOING
TO BE VERY IMPORTANT NOT ONLY TO
GET THIS FRAMEWORK OUT THERE,
BUT THEN THE NEXT STEP IS TO
DEVELOP A DETAILED
IMPLEMENTATION PLAN WITH INPUT
FROM ALL THE INSTITUTES AND
CENTERS AND ALL OF THE
LEADERSHIP, BECAUSE THOSE ARE
THE PEOPLE WHO CAN BRING THE
RESOURCES FORWARD TO MAKE THOSE
THINGS HAPPEN.
THE FACT THAT THERE IS THE DEIA
PERFORMANCE METRIC THAT IS PART
OF THE EVALUATION OF LEADERSHIP
IS HELPFUL, AND THERE ARE A LOT
OF CARROTS BEING DEVELOPED IN
TERMS OF VARIOUS INITIATIVES
ALREADY IN PLACE OR UNDER
DEVELOPMENT THAT WILL BE
HELPFUL.
BUT IT'S NOT SOMETHING THAT WE
WILL FULLY ACCOMPLISH, EVEN AT
THE FIVE-YEAR MARK.
IT SOMETHING THAT WE WILL BE
MOVING TOWARDS AND WE WILL HAVE
TO CONTINUE TO MEASURE OURSELVES
AND URGE OURSELVES TO MOVE
FURTHER.
>> IF I CAN JUST JUMP IN ON A
RESOURCING ISSUES, CERTAINLY
OVER FRANCIS' TENURE, AND WE'RE
CONTINUING THIS, TARA AND I, WE
HAVE PRIORITIZED THESE ISSUES
AND HAVE BEEN ABLE, YOU KNOW,
THROUGH PRIORITIZATION, MAKE
CERTAIN FUNDS AVAILABLE TO HELP
FACILITATE THINGS.
AND WE HAVE ALSO WORKED CLOSELY
WITH THE CONGRESS TO SEEK
INCREASES IN KEY COMPONENTS IS
THAT ALSO WILL HELP ENABLE THIS.
SO OF COURSE, YOU KNOW, YOU
NEVER HAVE ENOUGH RESOURCES TO
DO SOMETHING SO BROAD AND IN
SUCH DEPTH, BUT WE ARE MAKING
THIS A PRIORITY.
>> THANK YOU.
>> KRISTINA?
>> FIRST OF ALL, AGAIN,
DR. BERNARD, FABULOUS WORK AS
USUAL, AND SO JUST A COUPLE
QUICK QUESTIONS.
ONE IS, WITH REGARD TO THE
FIRST -- I HAD THE SAME QUESTION
AS SHELLEY DID IN THE CHAT ROOM.
WILL THERE BE MORE COMPETITIONS
AFTER THE FIRST FOR THE SUMMER
AND WILL PEOPLE KNOW IF THEY WON
OR NOT IN TIME TO RE-APPLY, OR
HOW MIGHT THAT WORK?
>> GREAT QUESTIONS.
IN TERMS OF LETTING PEOPLE KNOW
WHERE THEY STAND IN THE
COMPETITION, WE ON THE STEERING
COMMITTEE HAVE A PROPOSED LIST,
I KNOW THE COMMITTEE WANTS US TO
ACT ON IT AS SOON AS POSSIBLE.
WE'RE GOING TO HAVE TO GET
TOGETHER AND TALK BECAUSE
THERE'S SO MANY GOOD
APPLICATIONS.
THE COMMITMENT FIRST IS ONLY
THROUGH THIS FISCAL YEAR
'23 COMPETITION THAT'S CURRENTLY
OPEN.
IT'S VERY CLEAR THAT THERE IS A
LOT MORE NEED AND DESIRE TO
ADDRESS THINGS IN THE WAY THAT
FIRST PROPOSES IT CAN BE MET
WITH THE FUNDS THAT ARE
ALLOCATED.
HOWEVER, YOU WILL HEAR DURING
THE UNITE PRESENTATION A
PROPOSAL THAT IS UNDER
DEVELOPMENT THAT I LIKE TO CALL
FIRST LIGHT, THAT WILL GIVE AN
OPPORTUNITY POTENTIALLY FOR
ACADEMIC INSTITUTIONS TO GET
FUNDS TO DO A CLIMATE ASSESSMENT
AND TO BEGIN TO MAKE CHANGES.
>> NICE.
>> ALTHOUGH IT WILL NOT
NECESSARILY PROVIDE FUNDS TO
RECRUIT COHORTS.
THERE'S A LOT OUT THERE SO WE'LL
HAVE TO THINK ABOUT OTHER
CREATIVE WAYS OF FACILITATING IT
AS WELL.
>> ONE LAST LITTLE QUESTION ON
THE CLIMATE SURVEY.
WHAT PERCENTAGE OF RETURN DO YOU
CONSIDER TO BE SUCCESSFUL IN
ORDER TO FIGURE OUT THAT THE
CLIMATE HAS BEEN ACCURATELY
ASSESSED?
>> I WOULD HAVE TO DEFER TO OUR
PEOPLE WHO ARE LEADING THE
METRICS FOR THAT.
I KNOW IN GENERAL WHEN WE WERE
DOING THE COVID SURVEYS, WHAT WE
WANTED IN TERMS OF A SUCCESSFUL
RESPONSE RATE.
BUT I DARE NOT TRY TO STEP INTO
THEIR TERRITORY AND I DON'T KNOW
TSH
IF THERE'S ANYONE WHO CAN
RESPOND MORE ACCURATELY.
>> OUR CO-CHAIR OF UNITE, ALFRED
JOHNSON, IS ACTUALLY OUT FOR A
PERSONAL REASON RIGHT NOW, SO
WE'LL HAVE TO GET BACK TO YOU ON
THAT ONE.
>> THAT'S WONDERFUL.
THANK YOU SO MUCH.
AND AGAIN, CONGRATULATIONS.
>> IT'S A TEAM EFFORT.
WE HAVE A GREAT TEAM.
>> YES, YOU DO.
AND A GREAT LEADER.
>> WE'LL GO TO REBEKAH, THEN
SHELLEY --
>> I THINK MARIE ANSWERED MY
QUESTION, IT WAS THE SAME AS
KRISTINA'S.
I THINK THAT FACULTY COHORT
MODEL IS JUST -- IT'S SUCH AN
IMPORTANT MODEL IN WHAT'S GOING
ON WITH THAT PROGRAM IS
WONDERFUL, ANYTHING NIH CAN DO
TO EXTEND IS IT GREAT.
>> FIRST OF ALL, IT'S A
FANTASTIC HONOR TO BE PART OF
THIS GROUP.
I APOLOGIZE FOR NOISE IN THE
BACKGROUND.
I'M DEALING WITH SOME FLIGHT
DELAYS THROUGH DENVER
INTERNATIONAL AIRPORT.
BUT THANKS A LOT FOR THE
PRESENTATION, MARIE.
I THOUGHT IT WAS ABSOLUTELY FAB
TAS TICK.
I WANTED TO START OFF FIRST OF
ALL BY THANKING NIMH, NIDA AND
NINDS.
THERE WAS A MECHANISM RELEASED
YESTERDAY REALLY FOCUSED ON
R01 SUPPORT FOR NEW
INVESTIGATORS AND THOSE AT RISK
FOR LEAVING THE SYSTEM,
PARTICULARLY THOSE FROM THE RISK
BACKGROUNDS AND THEY CAN HAVE A
TRANSFORMATIVE IMPACT.
IF YOU LOOK AT THE AMOUNT
INVESTED, IT'S ABOUT 20 MILLION
A YEAR, WHICH RIVALS THE AMOUNT
GOING INTO FIRST, WHICH I THINK
IS 24 MILLION OVER 10 YEARS.
SO IT'S IMPORTANT TO TAKE THE
PRINCIPLES WE'RE TALKING ABOUT
HERE AND EXPAND TO BRINGING MORE
PEOPLE INTO OUR WORKFORCE AND
FIGURING OUT HOW TO SUPPORT OUR
COHORTS.
I HAVE A THREAD OF THREE
THOUGHTS, FROM THREE THINGS I
HEARD YESTERDAY THAT I'D LOVE TO
PULL TOGETHER AND GET YOUR
THOUGHTS ON AS WELL.
SO WE WERE TALKING ABOUT THE
HARASSMENT AND SORT OF
ACKNOWLEDGING THAT UNCOMFORTABLE
ENVIRONMENTS REALLY BAD FOR
SCIENCE, AND THE IMPORTANCE OF
ESTABLISHING POLICY THAT WOULD
ALLOW US TO REMOVE FUNDS OR MOVE
FUNDS AWAY FROM ENVIRONMENTS
THAT ARE BAD, IN OTHER WORDS,
THE REPORTING CAN GO TO NIH WITH
DECISIONS THAT THESE ARE NOT
GOOD ENVIRONMENTS TO DO SCIENCE.
WE CAN ALSO ACKNOWLEDGE THAT
DIVERSE ENVIRONMENTS ARE TO THE
BENEFIT OF SCIENCE AND THAT ARE
LIKELY TO GET BETTER OUTCOMES,
SORT OF THE CRUX THAT WE'RE
TALKING ABOUT HERE IN THE UNITE
INITIATIVE AS WELL, AND HOW
SCIENTIFIC REVIEW IS 1/2 FATING
THIS IDEA OF PEER REVIEW.
I WONDER IF THERE'S A WAY TO
PULL THESE THREADS TOGETHER AT
THE LEVEL OF PEER PEER REVIEO
CAUSE CHANGE THROUGHOUT THE
SYSTEM WHERE LET'S SAY TWO
GRANTS WERE SCORED EQUALLY FROM
THE SCIENTIFIC PERSPECTIVE, ONE
MIGHT SAY BUT THIS PROPOSAL IS
COMING FROM A GROUP WITH A
BETTER ENVIRONMENT, AN
ENVIRONMENT THAT BETTER SUPPORTS
BRINGING IN NEW AND DIVERSE
TALENT INTO THE WORKFORCE, OR
IT'S A BETTER TRAINING
ENVIRONMENT FOR GRADUATE
STUDENTS AS A WAY OF SAYING THIS
IS SOMETHING WE VALUE.
WE VALUE THE GOOD WORK OF THE
SCIENCE BEING DONE, BUT ALL ELSE
BEING EQUAL, YOU CAN HAVE
ADDITIONAL CONSIDERATIONS THAT
MIGHT SUPPORT THE WORK BEING
DONE FOR DIVERSITY AND INCLUSION
AS WELL.
>> THAT'S A REALLY INTERESTING
CONCEPT.
I KNOW OUR CENTER FOR SCIENTIFIC
REVIEW IS THINKING VERY
CREATIVELY ABOUT WAYS OF
REVISING REVIEW SO THAT THERE'S
MUCH MORE FOCUS ON THE SCIENCE
AND INNOVATION OF THE SCIENCE,
MUCH LESS OF A FOCUS ON WHO IS
THE SCIENTIST OR WHAT IS THE
ENVIRONMENT, BECAUSE THERE HAS
BEEN EVIDENCE OF THE MATTHEW
EFFECT, ET CETERA, THAT
SOMETIMES PEOPLE INADVERTENTLY
OR IMPOLICE IMPLICITLY GIVT
BECAUSE OF THE ENVIRONMENT.
SOME MAY BE SOMEWHAT AT A
DISADVANTAGE BECAUSE OF SOME OF
THOSE IMPLICIT WAYS OF THINKING
ABOUT THINGS.
THEY'VE ALSO PUT INTO PLACE A
LOVELY NEW TRAINING PROGRAM FOR
SCIENTIFIC REVIEW OFFICERS AND
FOR PEER REVIEWERS TO MAKE THEM
AWARE OF THOSE IMPLICIT BIASES,
AND TO GIVE THEM STRATEGIES FOR
ADDRESSING THOSE IMPLICIT BIAS
HAVE GOTTEN REALLY GOOD RESPONSE
FROM THE REVIEWERS AND FROM THE
STAFF.
SO THOSE ARE SOME THINGS I KNOW
ARE ONGOING TO MAKE FOR
DIFFERENCES.
AND I DON'T WANT TO, AGAIN,
TREAD INTO MY COLLEAGUES'
TERRITORY, NOT DR. NONI BYRNES,
IN A WAY THAT MAY NOT FULLY BE
ACKNOWLEDGING EVERYTHING THAT
THEY DO, BUT I KNOW THAT THEY
MADE SOME REALLY STRONG EFFORTS
TO MAKE SURE THAT THEIR REVIEW
PANELS OF REVIEWERS IS VERY
DIVERSE.
IN FACT, WHEN YOU LOOK AT THE
DIVERSITY OF THE REVIEWERS IN
STANDING REVIEW PANELS, IT EVEN
GREATER THAN THE DIVERSITY THAT
YOU FIND IN THE REGULAR
SCIENTIFIC WORKFORCE.
I THINK THERE'S A LOT OF WORK
THAT'S GOING ON IN THAT
DIRECTION.
AND I DO WANT TO MAKE A NOTE
THAT THE COMMON FUND FIRST
INITIATIVE IS ACTUALLY
COMMITTING $241 MILLION OVER THE
NEXT NINE YEARS.
SO IT'S CLOSE TO 24 MILLION PER
YEAR FOR THE FIRST INITIATIVE.
SO MAYBE COMPARABLE TO WHAT
YOU'RE DESCRIBING ON THAT OTHER
INITIATIVE.
SO THERE ARE A LOT OF
OPPORTUNITIES ALONG THOSE LINES
AND I'M SURE NONI IS PROBABLY
LISTENING TO THIS AND WILL HAVE
SOME OTHER THOUGHTS ABOUT THE
REVIEW PART OF IT.
>> I JUST WANTED TO BE CLEAR,
I'M NOT SUGGESTING THAT WE'RE
LIKE PRIORITIZING NECESSARILY
THE INVESTIGATE, TO INVR
SAYING THE CLIMATE THE
INVESTIGATOR IS CREATING SHOULD
BE PRIORITIZED.
IN OTHER WORDS, THIS
INVESTIGATOR CREATES A BETTER
CLIMATE FOR DOING SCIENCE THAT'S
WAY MORE INCLUSIVE, WE SHOULD
PRIORITIZE THAT GRANT OVER THE
OTHER.
>> I SEE WHAT YOU'RE SAYING.
YES, DR. TABAK, YOU WANTED TO
SAY SOMETHING ABOUT THAT?
>> THANKS VERY MUCH.
IT IS AN INTRIGUING
RECOMMENDATION.
BUT I THINK THAT TYPE OF
DECISION NEEDS TO BE AT THE
PROGRAMMATIC LEVEL, AT THE
PROGRAM LEVEL, NOT AT THE LEVEL
OF PEER REVIEW.
BECAUSE OFTEN, WE MAY BE AWARE
OF SOMETHING THAT THE GENERAL
SCIENTIFIC PUBLIC IS NOT AWARE.
BOTH GOOD AND BAD.
AND SO I THINK TO ASK PEER
REVIEWERS TO WEIGH IN WOULD BE
COMPLICATED.
NOW AS YOU KNOW, A NUMBER OF
PROGRAMS STARTING WITH THE BRAIN
INITIATIVE HAVE ASKED FOR
STATEMENTS OF HOW YOU'RE GOING
TO MAKE A MORE DIVERSE AND
INCLUSIVE ENVIRONMENT.
CERTAINLY THAT IS FAIR GAME FOR
PEER REVIEWERS TO WEIGH IN ON.
THAT'S GREAT.
BUT THAT'S SORT OF THE FIRST
ORDINATE.
I THINK WHAT YOU'RE REFERRING TO
IS SORT OF THE DERIVATIVE OF
THAT, AND I THINK THAT IS BEST
MADE BY THE INSTITUTE OR CENTER
STAFF.
>> I ALSO WANT TO COMPLIMENT THE
WHOLE TEAM AND DR. BERNARD.
IT'S REALLY AN AMAZING, YOU
KNOW, PORTFOLIO OF INITIATIVES.
I JUST WANTED TO COMMENT ALSO ON
THE FIRST INITIATIVE, WHICH IS
REALLY AMAIDSING, I THINK IT'S
HAD A HUGE IMPACT.
OUT HERE, OUTSIDE OF NIH, FOR
EXAMPLE AT PENN, ALTHOUGH WE
HAVEN'T WON ONE, WE HAVE STARTED
OUR OWN INITIATIVE WHICH IS
CALLED POWER, AND WE'VE DONE A
LOT OF HIRING ALREADY.
I WAS THINKING IT MIGHT BE
REALLY GREAT FOR NIH TO TRACK
THIS, LIKE TRACK WHAT IS THE
BROADER EFFECT OF THIS FIRST
INITIATIVE IN CREATING NEW
PROGRAMS ALL AROUND THE COUNTRY.
I THINK IT WOULD BE REALLY
POWERFUL TO BE ABLE TO TRACK
THAT AND SHOW THAT OFF, YOU
KNOW?
>> IT'S A GREAT IDEA.
SORT OF WHAT WE USED TO CALL THE
RIPPLE EFFECT, RIGHT?
>> EXACTLY.
>> BECAUSE WE ALSO -- YOU KNOW,
WE HAVEN'T GOTTEN GREAT YET BUT
WE'VE STARTED A PRETTY
AGGRESSIVE HIRING PROGRAM.
THE OTHER ONE I WAS GOING TO
COMMENT IN THE CHOOT TOO WITH
HOWARD CHANG IS THE HHMI
PROGRAM, THE WE PLAN TO PARTIE
IN THAT TOO.
SO THAT'S ANOTHER EXAMPLE OF
THAT.
>> EXACTLY.
EXACTLY.
SO I JUST WANTED TO MAKE THAT
PITCH AND ALSO IT SOUNDS LIKE
IT'S GOING TO CONTINUE BEYOND
THE THREE YEARS SO THAT'S
ABSOLUTELY FANTASTIC TO HEAR.
THANK YOU.
>> WE THANK YOU SO MUCH FOR THAT
INPUT.
I'VE SIMILARLY BEEN IMPRESSED
THAT THERE IS THE RIPPLE EFFECT
THAT APPEARS TO BE HAPPENING,
AND HAVE BEEN THINKING LONG AND
HARD ABOUT HOW WE MIGHT IN A
SYSTEMATIC FATION FASHION -D
HAVE A SIGN TISK WORKFORCE
DIVERSITY SEMINAR IN FEBRUARY
THAT WENT INTO GREAT DETAIL
ABOUT FACULTY COHORT RECRUITMENT
TRYING TO CAPTURE SOME OF THAT
ENERGY.
WE HAD 500 PEOPLE WHO SHOWED UP.
SO THAT SAID TO ME THERE'S A LOT
OF INTEREST STILL.
SO WE'LL SEE WHAT WE CAN DO
ABOUT THAT AND SEE WHAT WE MIGHT
BE ABLE TO BRING BACK TO YOU
GUYS.
>> FANTASTIC.
THANK YOU.
>> GARTH, I THINK YOU ARE UP
NEXT.
>> SO YOU KNOW, CONGRESSMAN
LUSO, I REMEMBER WHEN HE WAS
ALIVE AND BUILDING THE EARLY
VERSIONS OF WHAT BECAME THE
NIMHD AND THE BLACK CAUCUS, SOME
OF THE EARLIER WORK 20 OR SO
YEARS AGO, HAD ALWAYS FELT AS
THOUGH THE ROLE YOU HAVE AND A
LOT OF THE INITIATIVES YOU'RE
LEADING, DISPARITIES AND
DIVERSITY ACROSS NIH IS A
POPULAR BATTLE THAT REQUIRES
FUEL FROM BOTH THE INTERNAL
LEADERSHIP, ADVOCACY, AND I
WOULD SAY THIS COMMITTEE
OVERALL.
IT MADE ME WANT TO ASK YOU, WHAT
DO YOU THINK, WHAT WOULD YOU
IDENTIFY IS YOUR KIND OF NUMBER
ONE CHALLENGE AND THE THING THAT
WE COULD BEST -- AND YOU CAN
TAKE -- THIS IS THE WORST
ENVIRONMENT FOR YOU TO SPEAK
OPENLY ABOUT THAT, BUT HOPING TO
GIVE YOU AN OPPORTUNITY TO SAY
WHAT YOU NEED THE MOST HELP
WITH, AND YOU CAN SAY IT IN THE
MOST ELEGANT WAY POSSIBLE.
BUT WHAT I REMEMBER FROM BEING A
DISCIPLE OF CONGRESSMAN STOKES
AND OTHERS IS THAT IT TAKES A
REAL ARMY FOR YOU TO BE
SUCCESSFUL.
AND YOU KNOW, US BEING ABLE TO
CONTRIBUTE TO THAT IS THE
SINGULAR MOTIVE FOR MY QUESTION.
IN GENERAL.
>> THANK YOU FOR A THE QUESTIO.
I PERSONALLY FEEL VERY, VERY
HONORED AND PRIVILEGED TO BE IN
THIS ROLE AT THIS TIME, BECAUSE
THE SUN, THE STARS, THE MOON ARE
ALL ALIGNED.
PEOPLE ARE REALLY FOCUSED IN
THIS AREA.
THE HIGHEST LEVEL OF LEADERSHIP
HERE AT NIH IN THE DIRECTOR'S
OFFICE, INSTITUTE AND CENTER
DIRECTORS, THE PEOPLE AMONG THE
STAFF WHO ARE VERY FOCUSED IN
THIS AREA, AND WE HAVE ALL THESE
EXECUTIVE ORDERS THAT ARE
COMPELLING US.
SO IN MY MIND, THE BIG CHALLENGE
IS NOT BEING OVERWHELMED BY ALL
THE MOMENTUM AND TRYING TO
REALLY CAPTURE IT AND MAKE SURE
IT'S FOCUSED IN A USEFUL
FASHION.
OF COURSE THE CONVERSE OF THAT
IS, PEOPLE GET TIRED AFTER A
WHILE AND YOU LOSE MOMENTUM.
THAT'S SOMETHING I DO WORRY
ABOUT, AND THAT I REALLY HOPE
THAT YOU GUYS CAN KEEP US
ACCOUNTABLE FOR AND KEEP ASKING
US EXACTLY THE SORT OF QUESTION
THAT YOU'RE ASKING.
I THINK WE'RE IN A VERY GOOD
PATH TO MAKE A LOT OF PROGRESS
RIGHT NOW AND THAT YOU WILL SEE
SHORTLY THERE ARE A LOT OF
THINGS THAT HAVE BEEN
ACCOMPLISHED, BUT WE HAVE TO
KEEP UP THE WORK AND DO IT AT A
SUSTAINABLE PACE.
THAT'S WHAT I'M WORRIED MOST
ABOUT.
>> THANKS.
MAYBE IF I CAN JUST OFFER A
COUPLE OF ADDITIONAL POINTS.
I THINK THERE ARE MANY
INSTITUTIONS AROUND THE COUNTRY
THAT HAVE THE RESOURCES TO MAKE
A REAL DIFFERENCE HERE.
BUT THEN THAT BECOMES A DECISION
POINT THAT THEY NEED TO
UNDERTAKE.
AND EACH INDIVIDUAL INSTITUTION
HAS TO MAKE THAT DECISION FOR
THEMSELF.
I CAN'T TELL AN INSTITUTION TO
HIRE THIS FACULTY PERSON OR THAT
FACULTY PERSON, I CAN'T TELL AN
INSTITUTION TO PRIORITIZE AREAS
THAT WOULD FACILITATE AND
STRENGTHEN EFFORTS IN THIS
DOMAIN.
WE TRY AND BE CATALYTIC AND I
THINK KRISTINA POINTED OUT THE
FACT THAT INDEED INSTITUTIONS
ARE TAKING ON THEIR OWN EFFORTS
TO EITHER PREPARE FOR POTENTIAL
AWARD OR JUST USING THE IDEA AND
ADAPTING IT TO THEIR OWN UNIQUE
ENVIRONMENT TO DO IT THE WAY IT
WORKS BEST FOR THEM.
BUT AT THE END OF THE DAY, I
CAN'T HIRE FACULTY EXTRAMURALLY.
NOW INTRAMURALLY, WE CAN AND WE
ARE BUT WE'VE GOT TO CONTINUE
THIS AS A PARTNERSHIP.
NIH CAN ONLY DO SO MUCH.
WE NEED OUR PARTNERS IN THE
ACADEMIC COMMUNITY TO WORK WITH
US ON THIS.
>> I CERTAINLY DON'T WANT TO
DIMINISH THE ROLE NIH HAS IN
SETTING INCENTIVES.
IT'S BEYOND CATALYST, RIGHT, IF
NIH DECIDED IT WANTED TO PUT A
BILLION DOLLARS INTO DISEASE Y,
UNIVERSITIES ACROSS THE COUNTRY
WOULD START BUILDING CENTERS FOR
Y.
SO I THINK THERE'S AN INCREDIBLE
LEADERSHIP ROLE THAT NIH DOES
PLAY IN SETTING THE COURSE FOR
THE BROADER COMMUNITY AS WELL,
EERCH BEYOND
EVEN BEYOND THE IDEA OF A
PARTNERSHIP.
>> ROBERTA?
>> THANK YOU.
MARIE, VERY IMPRESSIVE AND
INSPIRATIONAL AS ALWAYS.
I WOULD PROPOSE THAT SO MUCH OF
WHAT NIH IS DOING IN THIS DEIA
SPACE IS ACTUALLY CREATING THE
FRAMEWORK, CREATING THE MODEL,
CREATING THE TEST BED FOR HOW
THIS CAN BE SUCCESSFULLY
ACHIEVED ACROSS MANY DIFFERENT
SCIENTIFIC COMMUNITIES,
SCIENTIFIC INSTITUTIONS.
SO IN THAT REGARD, I THINK
EVENTUALLY, AND CLEARLY I KNOW
THAT THIS GROUP IS MAKING
INCREDIBLE ADVANCES IN A
RELATIVELY -- INCREDIBLY
RELATIVELY SHORT PERIOD OF TIME
THAT I THINK THIS IS
TRANSLATABLE OUT TO THE LARGER
NIH FUNDING COMMUNITY.
SO I THINK THERE'S GOING TO BE
THE POTENTIAL FOR EXTRAMURAL
INFLUENCE THROUGH THE DESIGN
THAT PERHAPS WE DON'T HAVE TO
REINVENT THAT DEIA WHEEL
EVERYWHERE THAT, IN FACT, HERE'S
THE DESIGN THAT NOW YOU CAN
IMPLEMENT IN YOUR INSTITUTION
THAT IS SPECIFIC TO YOU, BUT YOU
DON'T HAVE TO WORK OUT THESE
DETAILS.
WE GOT YOU ON THIS.
SO I'M VERY EXCITED ABOUT THAT,
SO THANK YOU.
>> MARIE, IS THERE ANYTHING YOU
WANTED TO ADD IN RESPONSE?
I SAW YOU SHAKING YOUR HEAD.
>> I WAS AGREEING WITH ROBERTA,
AND I THINK THAT THERE ARE
THINGS THAT WE GET STARTED HERE
THAT CAN BE ADOPTED, THERE ARE
THINGS THAT WE GENERATE HERE
THAT ARE CARROTS TO GET PEOPLE
PPED ALONG
ALONG THE ROAD IN THE RIGHT
DIRECTION, THERE ARE PROCEDURES
WE DEVELOP THAT ARE STICKS TO
COMPEL PEOPLE.
SO WE ARE PRETTY BIG IN TERMS OF
THE FUNDING OF BIOMEDICAL
RESEARCH, AND I'M JUST EXCITING
THAT WE ARE USING THAT ROLE TO
INCENTIVIZE THINGS.
>> SHELLEY?
>> I HAVE ONE QUESTION THAT HAS
BEEN BOTHERING ME FOR A COUPLE
WEEKS.
I WAS AT A MEETING, I WAS AT A
GORDON CONFERENCE A COUPLE WEEKS
AGO, LAST WEEK ACTUALLY, AND WE
HAD A NOON DEIA SORT OF
BRAINSTORMING.
WHAT I HEARD THAT REALLY
RESONATES WITH ME, WHAT I HEAR
AT MY OWN INSTITUTION, WE HEARD
FROM THE TRAINEES, PEOPLE OF
COLOR, THAT THEY FEEL VERY --
LIKE THIS PARADOXICAL BURDEN,
THEY'RE EXCITED ABOUT THE
INITIATIVES BUT THEY FEEL THAT
THEY'RE BEING ASKED TO DO SO
MUCH TO FURTHER THESE GOALS.
AND THEY'RE EXCITED ABOUT IT,
THEY WANT TO DO IT, BUT THEY
ALSO WANT TO DO THEIR SCIENCE,
FOR EXAMPLE.
AND SO THEY FEEL THIS, YOU KNOW,
INTERNAL, YOU KNOW, PROBLEM.
AND THEY FEEL IT.
SO I JUST WONDERED -- I DIDN'T
SEE THAT ON ANY OF YOUR SLIDES,
I THINK THIS EMERGING ISSUE
THAT -- YOU KNOW, I THINK
EVERYBODY HAS TO PITCH IN, BUT I
THINK PEOPLE OF COLOR AND
DIVERSITY ARE ASKED TO PITCH IN
MORE.
AND WOMEN HAVE FELT THIS FOR A
LONG TIME, BUT IT'S EXTENDING
WELL BEYOND.
SO I JUST WONDERED, DR. BERNARD,
WHAT YOUR THOUGHTS WERE ABOUT
THAT.
>> I THINK YOU'RE ABSOLUTELY ON
TARGET ABOUT THAT.
IT BEEN GIVEN EVEN A MINORITY
TAX, AND WE ARE TRYING TO BE
VERY THOUGHTFUL ABOUT WHAT WE
CAN DO TO OFFSET THAT.
PART OF THE APPROACH IS TO MAKE
SURE TO BUILD STRONG ALLIES WHO
CAN ALSO CARRY THE BURDEN.
SO FOR INSTANCE, WHEN YOU SAW
THE PICTURE OF THE PEOPLE IN THE
DISTINGUISHED SCHOLARS PROGRAM,
THEY AREN'T EXCLUSIVELY
INDIVIDUALS WHO MAY COME FROM
UNDERREPRESENTED GROUP.
THEY ARE SIMPLY INDIVIDUALS WHO
ARE INTERESTED IN AND INVESTED
IN DIVERSITY IN THAT TRACK
RECORD.
WE HAVE STARTED IN OUR
EXTRAMURAL PROGRAM STAFF A
PROGRAM CALLED THE 21ST
CENTURIES COLLEGE PROGRAM THAT'S
MEANT TO DO THE SAME THING, TO
BUILD THOSE CHAMPIONS IN DEIA
AND EXPERTS IN DEIA WHO HAVE AN
INTEREST AND A TRACK RECORD, BUT
IT DOESN'T MEAN YOU HAVE TO BE
FROM AN UNDERREPRESENTED GROUP
TO SEE WHETHER WE CAN DEVELOP A
CRITICAL MASS AND HAVE A RIPPLE
EFFECT AND THE IMPACT ON FUNDING
OPPORTUNITY ANNOUNCEMENTS AND
WHO ENDS UP GETTING FUNDED BY
THE ICs.
WE HAVE -- AGAIN, WHEN YOU HEAR
THE UNITE PRESENTATIONS, SOME
INITIATIVES BEING DEVELOPED TO
TRY TO HELP INCENTIVIZE A BROAD
RANGE OF PEOPLE TO FOCUS ON
THESE ISSUES.
THERE'S AN RFI OUT FOR AN
INSTITUTIONAL PRIZE FOR DEIA.
THAT MEANS MORE THAN JUST THE
FACULTY WHO COME FROM
UNDERREPRESENTED GROUPS, HALF OF
THEM CONTRIBUTING TO THINGS.
THERE IS A PROPOSAL FOR AN
INDEPENDENT COMPETITIVE AWARD
FOR MENTORING IN DEIA, TO HELP
OFFSET SOME OF THAT MINORITY TAX
THAT WILL HOPEFULLY COME THROUGH
FISCAL YEAR '23.
MY TEAM WAS ABLE TO OFF AN
ADMINISTRATIVE SUPPLEMENT THIS
FISCAL YEAR TO RECOGNIZE
EXCELLENCE IN DEIA MENTORING.
AND IT'S VERY CLEAR, THERE ARE A
LOT OF PEOPLE OUT THERE, WHETHER
THEY COME FROM AN
UNDERREPRESENTED GROUP OR NOT,
WHO WOULD LIKE TO HAVE THAT
EXTRA CONSIDERATION RECOGNITION
BECAUSE IT DOESN'T GET PAID.
AND WE HAD AN OVERWHELMING
NUMBER OF QUERIES, AN
OVERWHELMING NUMBER OF
APPLICATIONS, SO WE'RE TRYING TO
WORK IN A LOT OF DIFFERENT WAYS
TO BOLSTER THAT, AND OTHER
THOUGHTS ABOUT THINGS THAT WE
COULD DO WOULD BE VERY WELCOME.
>> THIS IS FANTASTIC.
IT'S SO GREAT THAT THERE ARE SO
MANY WAYS THAT YOU'RE WORKING ON
THIS.
AGAIN, SORT OF SIMILAR TO MY
COMMENT PREVIOUSLY TO COLLECT
THESE IDEAS, AND TO POST -- YOU
KNOW, TO HAVE THEM AVAILABLE, I
THINK INSTITUTIONS NEED TO DO IT
WITHIN THEMSELVES.
AGAIN, AS HAS BEEN BROUGHT UP,
SO THAT IT'S NOT ONLY NIH BUT
INSTITUTIONS THEMSELVES ARE
TAKING THESE RHODES.
THANK YOU.
>> MANY OF THEM WILL BE COVERED
IN THE DEIA STRATEGIC PLAN
THAT'S BEING PULLED TOGETHER
THAT MARIE JUST SHARED.
I WANT TO FOLLOW UP BECAUSE I
GOT SOME DATA FROM OUR FOLKS WHO
RUN THE SURVEY, THE SURVEY THAT
WAS DONE IN 2019, ABOUT 16,000
RESPONSES.
SO IF WE LOOK AT OUR CURRENT
WORKFORCE, THAT'S A RESPONSE
RATE OF 40%.
AND WHAT WE'RE USING AS A
BASELINE FOR ALL THE FUTURE
SURVEYS THAT WE WANT.
OF COURSE THE GOAL IS TO GET
MUCH, MUCH CLOSER TO 100%, SO
WE'LL CONTINUE TO BUILD UP THE
INFORMATION SHARING AND
ENCOURAGING FOLKS TO PARTICIPATE
ONCE THAT GOES OUT.
ARE THERE ANY OTHER OR FURTHER
QUESTIONS OR COMMENTS FOLKS
WANTED TO MAKE BEFORE WE
TRANSITION?
>> WELL, TARA, I THINK WE HAVE A
COUPLE MINUTES LEFT.
I WAS JUST WONDERING IF OTHERS
AMONG THE COUNCILMEMBERS WOULD
LIKE TO WEIGH IN ON SHELLEY'S
POINT.
WHAT WOULD BE MOST HELPFUL, AS
MARIE SAID, WOULD BE ARE THERE
THINGS THAT WE HAVEN'T, YOU
KNOW, THOUGHT OF, BE THEY
CATALYTIC OR STANDARD PROCEDURE,
THAT WOULD HELP IN THIS REGARD?
BECAUSE SHE IS COMPLETELY
CORRECT ABOUT THE UNDUE BURDEN
RELATED TO THESE EFFORTS.
SO DO OTHERS WISH TO WEIGH IN?
I KNOW SOME OF YOU HAVE BEEN
DOING THIS A LONG TIME.
>> I'LL JUST SAY NONE OF THIS IS
NEW.
IF YOU LOOK BACK TO THE ARTICLES
FROM 12, 15 YEARS AGO, A LOT OF
FOLKS HAVE BEEN PUBLISHING ON
THIS FOR THE PAST ALMOST 20
DECADES TO SOME DEGREE.
AND HOW IT'S HAMPERED ACADEMIC
ADVANCEMENT.
I THINK CERTAINLY THERE ARE
THINGS THAT NEED TO OCCUR
OUTSIDE OF NIH CULTURALLY IN
TERMS OF IF YOU LOOKED AT SOME
OF THAT DATA OF WHAT'S BEEN
RECOMMENDED, THERE'S A LOT OF
RECOMMENDATIONS ABOUT HOW WE
COUNT THE TIME THAT PEOPLE SPEND
WORKING ON THESE EFFORTS IN
TERMS OF ACADEMIC ADVANCEMENT,
WHAT'S VALUED IN ACADEMIC WORLD,
YOU KNOW, THE KINDS OF WORK THAT
MINORITY STUDENTS, FACULTY AND
LEADERS GET THAT IS JUST RAW
SUCKING ON TIME AND DOESN'T
CONTRIBUTE.
THE ONLY THING I WOULD SAY,
THERE HAS BEEN A LOT PUBLISHED
ON THIS, THERE'S A LOT TO SAY ON
WHAT COULD BE DONE AND A LOT OF
IT IS AROUND CULTURE SHARING AND
QUANTIFYING AND GIVING CURRENCY
TO THAT WORK, BUT ALSO
BROADENING THE SCOPE AND
RESPONSIBILITY FOR OTHERS.
>> THANKS.
>> JAMES AND THEN WE'LL GO TO
ALEXA AND JUDITH.
>> JAMES, WE CAN'T HEAR YOU.
>> I'M SORRY.
>> THAT'S BETTER.
>> THANK YOU.
I WASN'T SURE IF SHE HAD CALLED
MY NAME.
MY COMMENT IS, I'VE BEEN DOING
THIS A LONG TIME, IS DO NOT MAKE
ASSUMPTIONS ON THE PART OF THOSE
MINORITY STUDENTS AND OTHERS
ABOUT THEIR MOTIVATIONS OR ALL
OF THIS.
WHEN I WAS AT HOPKINS, I WAS THE
ONLY AFRICAN AMERICAN FACULTY
MEMBER OUT OF 300 AT THE TIME IN
BASIC SCIENCES.
EVERY TIME SOMETHING CAME UP
THAT RELATED TO MINORITY ISSUES,
THE DEAN WOULD CALL ON ME TO
WORK ON THOSE ISSUES EVEN THOUGH
I WAS AN ASSISTANT PROFESSOR.
AND ONE OF THE MOST ENDEARING
THINGS THAT HAPPENED TO ME WITH
MY DEPARTMENT CHAIRMAN, I THINK
I TOLD YOU THIS BEFORE, HE
MARCHED ME TO THE DEAN'S OFFICE
AND HE SAID DIRECTLY TO THE DEAN
THAT HE NEEDED TO LEAVE ME
ALONE, I NEEDED TO GET MY WORK
DONE JUST LIKE EVERYBODY ELSE.
MY POINT IS MINORITY RESEARCHERS
ARE MOTIVATED BY THE SAME THING
EVERYBODY ELSE IS AND WE NEED TO
STOP MAKING ASSUMPTIONS ABOUT
THEIR MOTIVATIONS, ABILITIES,
WHATEVER, AND THE WORST THING
YOU CAN DO IS TO CREATE AN
ENVIRONMENT WHERE IT SEEMS LIKE
YOU'RE BEING TREATED DIFFERENTLY
THAN OTHERS.
THE WHOLE POINT IS TO REMOVE ALL
THOSE THINGS, TO TAKE AWAY THE
ASSUMPTIONS, AND JUST ASSUME
WE'RE ALL DOING IT FOR THE SAME
REASON.
WE'VE GOT TO GET THOSE FOLKS IN
THE ENVIRONMENTS, PWI
ENVIRONMENTS TO UNDERSTAND THAT.
TREATING PEOPLE DIFFERENTLY IS
WHAT GOT US HERE IN THE FIRST
PLACE.
SO MY RECOMMENDATION IS,
DR. BERNARD, THAT IN DOING ALL
OF THIS WORK, YOU KEEP HAMMERING
HOME THAT POINT, THAT THE
UNCOMPENSATED EMOTIONAL LABOR
HAS TO BE DONE AWAY WITH.
I'VE HAD IT THROUGHOUT MY WHOLE
CAREER, AND TO SHELLEY'S POINT,
IT SOMETHING WE HAVE TO FIND A
WAY TO DEAL WITH.
ONE WAY TO DEAL WITH IT IS TO
STOP MAKING ASSUMPTIONS ABOUT
PEOPLE AND THEIR MOTIVATIONS AND
THEIR ABILITIES.
THAT'S MY 2 CENTS, LARRY.
>> GREAT.
THANK YOU.
AND WORTH A LOT MORE THAN 2
CENTS, SO THANKS.
>> ALEXA?
>> YEAH, I COMPLETELY ECHO SOME
OF THE THINGS WE'VE JUST HEARD.
I THINK I HAVE, IN THE PAST,
COUNSELED PEOPLE TO SAY NO TO
SOME OF THESE OPPORTUNITIES
BECAUSE IT'S NOT CORE TO SOME OF
THE OTHER THINGS THAT THEY
REALLY WANT TO ACHIEVE IN THEIR
CAREERS.
SO PART OF THAT IS GIVING
PERMISSION.
BUT THE FLIP SIDE IS THAT WE
NEED A CRITICAL MASS SO THAT THE
BURDEN IS DISTRIBUTED MORE
EVENLY, AND THE THIRD IS, WE
NEED TO CREATE WAYS TO
COMPENSATE FOR THAT TIME SO THAT
PEOPLE CAN GIVE UP OTHER
ACTIVITY TO MAKE ROOM FOR IT,
AND INCREASE THE ACADEMIC VALUE
THAT'S ATTRIBUTED TO IT.
SO JUST AS WE STRUGGLED WITH HOW
DO YOU REWARD EDUCATORS AS
HAVING SCHOLARLY ACADEMIC VALUE
SOMETIMES, THIS HAS SOME RELATED
PROPERTIES THAT DOING THIS WORK
CAN BE AN AREA OF DEMONSTRATED
SCHOLARLY ACTIVITY THAT GETS
CREDIT IN THE PROMOTION PROCESS.
SO I THINK IF YOU TAKE ALL FOUR
OF THOSE TOGETHER, YOU CAN START
TO PERHAPS MOVE THE DIAL.
>> JUDITH?
>> SO I WOULD LIKE TO ALSO AGREE
WITH A LOT OF WHAT'S BEEN SAID.
FIRST OF ALL, CONGRATULATING
MARIE FOR ALL OF HER EFFORTS.
I ALSO AGREE THERE'S NOTHING NEW
HERE, EXCEPT THE FACT THERE'S SO
MUCH MOMENTUM RIGHT NOW, AND
THAT I THINK IS SO IMPORTANT
THAT WE NOT LOSE.
WITH THIS MINORITY TAX, THIS IS
SOMETHING WE'VE BEEN WORKING ON
HERE AT WISCONSIN, AND WE'VE SET
UP DEI COMMITTEES AT ALMOST
EVERY LEVEL OF THE DEPARTMENT
THAT ARE WORKING TOGETHER
BETWEEN DEPARTMENTS, WITHIN
DEPARTMENTS, AT THE CAMPUS
LEVEL, AND IT WOULD BE NICE TO
SEE THAT SAME SORT OF
COOPERATION BEING NATIONAL AS
WELL.
BUT MANY OF THE DEI COMMITTEES,
THERE ARE CLEARLY DIVERSE
CANDIDATE ON THEM BECAUSE THEY
WANT TO BE THERE, BUT THEY ARE
LED, AT LEAST SOME OF THEM, BY
NON-DIVERSE CANDIDATES WHO ARE
DEEPLY COMMITTED TO THIS.
SOMETHING THAT FREEMAN RIBOWSKI
DID IN ORGANIZING HIS SCHOLARS'
PROGRAM WAS TO INSIST ABOUT
COMMITMENT TO DIVERSITY AND
CHANGE, THAT IT WASN'T -- YOU
KNOW, HE WASN'T FOCUSING ON
BRINGING IN DIVERSE PEOPLE,
ALTHOUGH THERE WERE A LOT OF
DIVERSE CANDIDATES.
THEY WERE COMMITTED.
AND I THINK ONE OF THE THINGS
THAT HE DID THAT WAS REALLY
IMPORTANT WAS WAS THAT HE ALLD
THE PEOPLE IN HIS COHORT TO MAKE
DECISIONS ABOUT WHO JOINED.
THAT THEY WERE THE PEOPLE, NOT
THE HIGHER UPS, BUT THE PEOPLE
WHO WERE BEING RECRUITED INTO
HIS PROGRAM WERE INTERVIEWED BY
THE CURRENT COHORT, AND THEY
COULD JUST TELL WHO WAS REALLY
COMMITTED.
IT DIDN'T DEPEND ON SKIN COLOR.
IT DEPENDED ON WHAT THEY
ACTUALLY HAD DONE ALREADY AND
WHAT THEY WERE PLANNING TO DO
AND WHAT THEIR VISION WAS.
SO I THINK IT'S A VERY EXCITING
TIME, AND WE'VE BEEN INVOLVED IN
THIS IN PARALLEL IN OTHER
ORGANIZATIONS, AND WE ALL HAVE
TO COME TOGETHER BULL THE MILE
STOPES ARE SUPER IMPORTANT, AND
I WOULD ALSO LIKE TO ECHO WHAT
WAS SAID ABOUT HOW IMPORTANT THE
REVIEW PROCESS IS, BECAUSE TO
ME, IF WE AREN'T BRINGING PEOPLE
IN AND FINANCING PEOPLE ACROSS
THE SPECTRUM, THIS IS GOING TO
FAIL IN FIVE YEARS, AND WE NEED
TO KEEFE UP THE KEEP UP D
EXPANDING OUR REVIEW CRY CRITS
GOING TO BE REALLY WORTH IT.
THANK YOU.
>> WELL, THANKS TO ALL OF YOU.
THERE IS SOMEONE WHO HAS A
BACKGROUND CONVERSATION.
SOUNDS LIKE A RADIO OR MAYBE
YOU'RE IN AN OFFICE WITH OTHER
FOLKS, I DON'T KNOW.
SOMEHOW THAT IF THAT COULD B,
THAT WOULD HELP.
SO THAT WAS A VERY RICH
DISCUSSION.
MARIE, THANK YOU SO MUCH FOR
PRESENTING WHAT IS A VERY
COMPLEX AND I HOPE PEOPLE AGREE
THOROUGH APPROACH, BUT THAT WAS
JUST THE WARMUP.
AND WE NOW HAVE THE OPPORTUNITY
TO HEAR FROM THE UNITE TEAM, WHO
WILL BE SHARING THEIR FORMALIZED
GOALS AND THEN EACH COMMITTEE
WILL PROVIDE YOU WITH UPDATES,
AND THEN THEY WILL END BY
SHARING WITH YOU THEIR PLANS FOR
EVALUATION, AND THEN WE'LL OPEN
IT UP TO A GENERAL DISCUSSION.
SO WE HAVE -- WE'VE ALLOTTED AN
HOUR AND A HALF.
EACH OF THE -- OKAY, SOMEBODY IS
REALLY ALLOWING A CONVERSATION
TO GO ON IN THE BACKGROUND.
IT STOPPED.
OKAY, GREAT.
SO I HOPE -- AND THIS IS WHERE
TARA'S TIMER IS GOING TO BE VERY
IMPORTANT, BECAUSE WE'LL HAVE TO
KEEP EVERYTHING ON TIME, TO MAKE
SURE WE HAVE AN APPROPRIATE
AMOUNT OF TIME FOR DISCUSSION AT
THE END.
SO WITH THAT, LET'S BEGIN AND
I'M NOT QUITE SURE WHO IS THE
LEAD SPEAKER.
SO MARIE?
>> THAT'S ME ACTUALLY, LARRY.
>> OH, GREAT.
>> I'M GOING TO JUMP IN AND
REPRESENT THE UNITE CO-CHAIRS
FIRST AND MARIE AND I ARE KIND
OF GOING TO TAG-TEAM THESE
PRESENTATIONS THAT WE HAVE HERE.
SO JUST AS A REMINDER ABOUT
UNITE, UNITE WAS ESTABLISHED TO
IDENTIFY STRUCTURAL RACISM IN
THE NIH AND NIH SUPPORTED
COMMUNITY AND OF COURSE THAT
WILL SPILL OVER TO THE GREATER
SCIENTIFIC COMMUNITY.
AND UNITE HAS REPRESENTATION
FROM ACROSS ALL THE DIFFERENT
NIH INSTITUTES AND CENTERS.
AND THE OFFICE OF THE DIRECTOR,
AND AIMS TO ESTABLISH AN
EQUITABLE AND CIVIL CULTURE AND
REDUCE BARRIERS TO RACIAL EQUITY
WITHIN THAT BIOMEDICAL RESEARCH
ENTERPRISE AND ACROSS THE
WORKFORCE.
SO I'LL BRIEFLY JUST TAKE US ON
A LITTLE JOURNEY, I GUESS, OF
THE PATH THAT WE'VE TAKEN THUS
FAR, AND SOME OF THE OVERARCHING
GOALS OF UNITE.
OF COURSE YOU'LL HEAR FROM THE
UNITE COMMITTEE LEADERSHIP WHO
ARE GOING TO PROVIDE AN UPDATE
ON THEIR PROGRESS AND
ACTIVITIES.
AND THEN FINALLY A PRESENTATION
ON THE EVALUATION THAT WILL BE
UNDERTAKEN TO HELP ASSESS HOW WE
CAN MEASURE PROGRESS AND
DETERMINE WHETHER WE'RE
ACHIEVING THE GOALS THAT WE'RE
SETTING FOR OURSELVES.
THIS IS JUST A REMINDER HERE,
BUT YOU'LL SEE THE AREAS OF
FOCUS THAT UNITE IS ADDRESSING,
WHICH INCLUDE EFFORTS RELATED TO
THE INTERNAL AND E TERNL EXTERNL
WORKFORCE AS I MENTIONED AND
ALSO HEALTH DISPARITIES,
MINORITY HEALTH, HEALTH EQUITY
RESEARCH, AND A CROSS-CUTTING
ELEMENT OF ENSURING DATA IS
COLLECTED AND AVAILABLE SO THAT
WE BASE OUR DECISIONS ON A
STRONG EVIDENCE BASE.
IN THINKING ABOUT WHERE WE
STARTED AND HOW WE HAVE
PROGRESSED, UNITE WAS ANNOUNCED
AT A SPECIAL ACD MEETING LAST
FEBRUARY, AND WE STATED THERE
AND IT'S A METAPHOR WE CONTINUE
TO USE, I THINK MARIE AT LEAST
FROM THE PERSPECTIVE OF UNITE
ORIGINATED, WHICH IS THAT WE'RE
STARTING A MARATHON, AN ULTRA
MARATHON PROBABLY, AND IT WILL
HAVE SOME CHECKPOINTS ALONG THE
WAY, WHERE WE HOPE TO BE ABLE TO
SHOW THAT WE'RE PROGRESSING
ALONG THE BATH THAT WE PO
BE ON.
OF COURSE ALL INVOLVED HAVE
CERTAINLY FELT THE URGENCY OF
THIS AS WE WORK TO ESTABLISH AND
TO IMPLEMENT THE FOUNDATIONAL
ELEMENTS AND THE STRUCTURE, BUT
WE RECOGNIZE AND APPRECIATE THAT
SIGNIFICANT AND LASTING CHANGE.
SO WHAT ARE SOME OF THE
MILESTONE CHECKPOINTS?
YOU CAN SEE HERE ON THIS SORT OF
TIME
TIMELINE SOME EXAMPLES OF THE
EXTRAORDINARY PROGRESS THAT HAS
OCCURRED SINCE LAST YEAR,
INCLUDING THE RELEASE OF SEVERAL
FUNDING OPPORTUNITIES SUCH AS
THE COMMON FUND INITIATIVE
SEEKING TRANSFORMATIVE RESEARCH
TO ADDRESS HEALTH DISPARITIES
AND ADVANCE HEALTH EQUITY.
AND LAST SUMMER, WE ALSO
ESTABLISHED AN INTERNAL
ANTI-RACISM STEERING COMMITTEE
THAT STARTED WITH OVER 500
MEMBERS AND IS STILL GROWING
STRONG.
WE'RE TALKING ABOUT REALLY
BUILDING UP THAT BASE OF BROAD
SUPPORT, I THINK THIS IS A GREAT
EXAMPLE OF THAT.
AND IF WE GO TO THE NEXT SLIDE.
WE MOVE FORWARD AND WE CAN SEE
THAT LAST FALL THE COMMON FUND
MADE 11 AWARDS AS PART OF THE
INITIATIVE THAT I REFERENCED ON
THE PREVIOUS SLIDE.
THE FIRST INITIATIVE, WHICH
MARIE MENTIONED, AIMS TO ENHANCE
AND MAINTAIN CULTURES OF
INCLUSIVE EXCELLENCE WITHIN THE
BIOMEDICAL RESEARCH COMMUNITY,
AND THEY'VE FUNDED SIX COHORTS.
I THINK MARIE ALREADY POINTED
OUT THERE'S A NEW FOA OUT FOR
THIS PROGRAM AND APPLICATIONS
ARE DUE IN JULY BUT I THINK IT'S
WORTH REPEATING.
THERE WAS ALSO A REQUIREMENT FOR
EACH I.C. TO ESTABLISH A RACIAL
AND ETHNIC EQUITY PLAN, AND THAT
WAS IMPLEMENTED LAST FALL, AND
THOSE ARE WELL ON THEIR WAY, THE
PLANS ARE WELL ON THEIR WAY TO
BEING FINALIZED WITH INITIAL
DRAFTS THAT WERE SUBMITTED ABOUT
A MONTH OR SO AGO.
WE ALREADY MENTIONED THIS AND
YOU'LL HEAR MORE ABOUT IT IN A
BIT, BUT LAST DECEMBER, WE
LAUNCHED THE POWER OF AN
INCLUSIVE WORKFORCE RECOGNITION
PROJECT TO CELEBRATE THE
IMPORTANCE OF INCLUSION AND THE
EXPERIENCES THAT PEOPLE OF ALL
BACKGROUNDS HAVE, AND RECOGNIZE
THEIR CONTRIBUTION TO THE
MISSION OF NIH.
ONE OF THE OTHER THINGS THAT
WE'VE GOTTEN IS LOTS OF
LISTENING SESSIONS TO HEAR FROM
THE COMMUNITY, AND YOU'LL LEARN
MORE ABOUT THE FEEDBACK AND
CROSS-CUTTING OBSERVATIONS FROM
THOSE LISTENING SESSIONS HERE
SHORTLY, AS WE GATHERED THAT
FEEDBACK AND INSIGHT FROM THE
COMMUNITY.
FINALLY THE LAST THING I'LL
POINT OUT, JUST TO HIGHLIGHT
AGAIN AS AN EXAMPLE, IT'S THE
INSTITUTIONAL DEIA PRIZE
COMPETITION RFI THAT'S CURRENTLY
OPEN FOR INPUT.
THIS PRIZE WILL ACKNOWLEDGE AND
REWARD THE TRANSFORMATIVE
INTERVENTIONS DEVELOPED BY
INSTITUTIONS TO CREATE RESEARCH
ENVIRONMENTS THAT PROMOTE AND
VALUE DEIA, AND WE WANT TO HEAR
FROM THE COMMUNITY ABOUT THEIR
IDEAS FOR THIS, SO SORT OF
BUILDING ON SOME OF THE PREVIOUS
CONFERENCE
CONVERSATION WE'VE HAD IS VERY
MUCH IN ALIGNMENT WITH THAT.
AND WHILE MUCH, OF COURSE, HAS
BEEN ACCOMPLISHED, I TOUCHED ON
SOME OF THE EXAMPLES THAT ARE
LISTED HERE, THERE ARE MANY
OTHERS THAT ARE NOT ON THE
SLIDES.
YOU KNOW, WE ALSO APPRECIATE
THAT THERE IS MUCH MORE GROUND
TO COVER.
IF YOU GO ON TO THE NEXT SLIDE,
WE TRIED TO CLEARLY ARTICULATE
WHERE WE WANT TO GO AND WHAT WE
WANT TO ACHIEVE, AND SO HAVE
OUTLINES AND GOALS FOR THE UNITE
INITIATIVE TO ADDRESS.
THE FIRST ONE THAT'S LISTED HERE
IS FOCUSING ON THE RESEARCH TO
ENABLE EACH IC TO PRIORITIZE
RESEARCH ON HEALTH DISPARITY AND
HEALTH INEQUITIES, EAND SURE ANG
FUNDING LEVELS ARE ON PAR WITH
OTHER LEVELS OF NIH FUNDED
RESEARCH.
AS WE TRANSITION TO THE
WORKFORCE, AND IN PARTICULAR THE
NIH EXTERNAL COMMUNITY, FUNDING
RIGHT FOR SCIENTISTS FROM
UNREPRESENTED GROUPS -- ONE OF
THE GOALS IS TO REDUCE
DISPARITIES IN THESE FUNDING
RATES AND ENSURE THAT THOSE
INVESTIGATORS HAVE INSTITUTIONS
WITH A HISTORICAL COMMITMENT TO
EDUCATING STUDENTS FROM
UNDERREPRESENTED BACKGROUNDS ARE
ON PAR WITH THOSE IN OTHER
INSTITUTIONS.
AND THEN AS WE LOOK INTERNALLY
AT OUR OWN NIH WORKFORCE, WE
NOTE THAT THERE ARE BARRIERS
THAT PERSIST FOR
UNDERREPRESENTED POPULATIONS,
AND THOSE BARRIERS CAN
NEGATIVELY AFFECT THE WORK
ENVIRONMENT AND ORGANIZATIONAL
CULTURE, THAT CAN ULTIMATELY
LEAD TO INEQUITIES.
SO THE GOAL IS TO CREATE AND
SUSTAIN AN ENVIRONMENT AND
CULTURE THAT IS EQUITABLE AND
PROVIDES EQUAL OPPORTUNITIES.
AND WE WANT TO ENSURE THAT
RACIAL DISPARITIES IN HIRING AND
PROMOTION ARE -- HERE ON THE
SLIDE ARE REDUCED, BUT I'LL ,
STRIVING TO ELIMINATE THEM ALL
TOGETHER.
AND FINALLY IF YOU GO TO THE
NEXT AND LAST SLIDE ON THIS,
NEED AN ACCURATE COMPREHENSIVE
AND EASILY ACCESSIBLE WORKFORCE
DATA, BECAUSE HAVING A LACK OF
THAT DATA REALLY HAMPERS SOME OF
OUR EFFORTS TO ADDRESS
STRUCTURAL RACISM AND
DISCRIMINATION WITHIN NIH BUT I
THINK IT ALSO COULD PLAY OUT
INTO THE GREATER RESEARCH
COMMUNITY, SO PUTTING FORTH A
GOAL TO IMPROVE DATA ACCURACY,
TRANSPARENCY AND ACCESSIBILITY
IS JUST GOING TO BE A CRITICAL
STEP ON THE PATH TO PROGRESS.
SO AGAIN, WE KNOW THAT MANY OF
THESE GOALS DO NOT HAVE SIMPLE,
EASY TO IMPLEMENT SOLUTIONS.
BUT THEY WILL HELP TO SERVE AS A
GUIDE FOR US, AS WE NAVIGATE
THIS ULTRA MARATHON PATH.
AND I AM NOT A MARATHONER, SO IF
I HAVE DONE A DISSERVICE TO THAT
METAPHOR, APOLOGIES.
BUT I THINK THE PLAN IS NOW THAT
WE'RE JUST GOING TO TRANSITION
AND JUMP IN TO THE UPDATE
PRESENTATIONS FROM THE DIFFERENT
COMMITTEES.
SO I'LL TURN IT OVER TO
COLLEAGUES ON THE U COMMITTEE TO
PROVIDE THEIR UPDATE.
>> THANK YOU, TARA.
HELLO, EVERYONE.
I'M MONICA WEBB HOOPER.
I'M DELIGHTED TO HAVE THE
OPPORTUNITY TO PROVIDE AN UPDATE
ON OUR EFFORTS.
THE U COMMITTEE IS CHARGED WITH
CONDUCTING A BROAD -- AND LEAD
TO A LACK OF DIVERSITY, EQUITY
AND CONCLUSION.
AMONG OUR OBJECTIVES IS TO
CONDUCT LISTENING ACTIVITIES
WITHIN NIH AND THE SCIENTIFIC --
THE EXTERNAL SCIENTIFIC
COMMUNITY.
TODAY'S UPDATE WILL FOCUS ON
SUMMARIZING THE APPROACH AND
FINDINGS FROM A SERIES OF
EXTERNAL LISTENING SESSIONS
CONDUCTED BETWEEN DECEMBER OF
2021 AND FEBRUARY OF 2022.
WE SOUGHT TO LISTEN AND LEARN
ABOUT PERSPECTIVES AND
EXPERIENCES RELATED TO RACIAL
AND ETHNIC EQUITY TO HELP INFORM
ONGOING AND FUTURE EFFORTS OF
UNITE.
THIS IS THE U COMMITTEE
FRAMEWORK, WHICH INCLUDES
ACKNOWLEDGING THE EXISTENCE OF
THESE ISSUES, LISTENING AND
HEARING PERSPECTIVES AND
EXPERIENCING, EVALUATING, USING
BOTH QUALITATIVE AND
QUANTITATIVE DATA, AND
CATALYZING RECOMMENDATIONS FOR
CONSIDERATION BY NIH LEADERSHIP.
THE EXTERNAL LISTENING SESSIONS
ARE AN ESSENTIAL COMPONENT OF
THIS WORK AND WERE ONE TONIGHT
FOR THOSE IP VESTED IN THE
EXTRAMURAL SCIENTIFIC COMMUNITY
TO CONTRIBUTE TO UNITE.
OUR LISTENING SESSIONS ARE
GROUNDED IN THE WELL-KNOWN
SOCIOECOLOGICAL MODEL, TO
CONCEPTUALIZE MULTILEVEL FACTORS
THAT AFFECT DISCRIMINATORY
EXPERIENCES, STRUCTURAL RACISM
AND INEQUITIES AT THE
INDIVIDUAL, INTERPERSONAL,
INSTITUTIONAL, COMMUNITY AND
POLICY LEVELS.
THIS IS A HIGH LEVEL SUMMARY OF
OUR APPROACH TO ENGAGEMENT AND
CONDUCTING THE LISTENING
SESSIONS.
WE ENGAGE INDIVIDUALS FROM
MULTIPLE SEGMENTS OF THE
EXTERNAL OR EXTRAMURAL SCIENCE
COMMUNITY USING A COMPREHENSIVE
OUTREACH STRATEGY TO REACH
PEOPLE WITH VARIED DISCIPLINES
AND BACKGROUNDS.
WE WERE INTENTIONAL ABOUT
ENGAGING VOICES BEYOND THE USUAL
SUSPECTS, INCLUDING RESEARCH
STAFF, TRAINEES AND STUDENTS,
FAITH-BASED ORGANIZATIONS AND
HOUSES OF WORSHIP, AND OTHER
CONSTITUENTS.
THE LISTENING SESSIONS WERE
VIRTUAL, ABOUT TWO HOURS IN
DURATION.
SOME WERE HELD IN AFTERNOONS AND
ALSO EVENINGS, AND THEY WERE
FACILITATED BY OUTSIDE
CONTRACTORS.
SO WE HELD 14 LISTENING SESSIONS
THAT WERE ABOUT 1300 ATTENDEES
AT THE SESSIONS WHICH WERE
SEGMENTED IN GROUPS SHOWN HERE.
ABOUT 59% OF ATTENDEES WERE AT
SESSIONS FOCUSED ON EXPERIENCES
IN VARIOUS ACADEMIC SETTINGS.
WE WERE ALSO PLEASED TO HEAR
VOICES FROM AMERICAN INDIAN OR
ALASKA NATIVE COMMUNITIES,
FAITH-BASED ORGANIZATIONS, AND
COMMUNITY-BASED ORGANIZATIONS AS
WELL AS PROFESSIONAL SOCIETIES
AND FOUNDATIONS.
NOW I'D LIKE TO SUMMARIZE THE
FINDINGS OF WHAT WE HEARD
CUTTING ACROSS THESE GROUPS.
THESE WERE THE TOPICS RAISED FOR
DISCUSSION, WHICH WERE ADAPTED
AS APPROPRIATE TO THE SEGMENT.
IN ADDITION, THE SESSIONS WERE
ONLY SEMI STRUCTURED, MEANING
THAT PARTICIPANTS COULD RAISE
ADDITIONAL TOPICS IF THEY
WISHED, AND AN IMPORTANT NOTE IS
THAT ALL OF THE FINDINGS THAT
I'M ABOUT TO DISCUSS REPRESENT
THE PERCEPTIONS AND EXPERIENCES
OF THE ATTENDEES VERSUS FACTUAL
STATEMENTS PER SE.
ON THE TOPIC OF THE STATE OF
EQUITY IN THE BIOMEDICAL
SCIENCES, THE OVERALL THEME
ACROSS GROUPS WAS THAT THE
PERCEPTION THAT SYSTEMIC
INEQUITIES ARE VAST AND PRESENT
ACROSS THE BIOMEDICAL RESEARCH
ECOSYSTEM.
THE DISCUSSIONS CENTERED AROUND
P.I. LEVEL DISPARITIES AND NIH
GRANT FUNDING, STEMMING FROM
PERCEIVED BIASES DURING
SCIENTIFIC REVIEW, LEADING TO
LOWER LIKELIHOOD OF FUNDING
AMONG UNDERREPRESENTED MINORITY
SCIENTISTS.
PARTICIPANTS DESCRIBED
INTERPERSONAL LEVEL, MICRO AND
MACRO AGGRESSIONS, INCLUDING
EXPERIENCES OF DISCRIMINATION
AND WORKPLACE SETTINGS,
PERCEPTIONS THAT
UNDERREPRESENTED MINORITY
TRAINEES AND SCIENTISTS ARE LESS
QUALIFIED, AND THAT RACIAL AND
ETHNIC MINORITY GROUPS ARE
VIEWED AS MONOLITHIC.
A NOTABLE THEME WAS AROUND
DISPARITIES IN NIH GRANT FUNDING
AND MINORITY SERVING
INSTITUTIONS, AS WELL AS THE
POWER DIFFERENTIAL BETWEEN THESE
INSTITUTIONS AND PREDOMINANTLY
WHITE INSTITUTIONS WHEN
COLLABORATIONS ARE ATTEMPTED.
THE DISPROPORTIONATE IMPACT OF
THE PANDEMIC ON RACIAL AND
ETHNIC MINORITY COMMUNITIES AND
THE STRUCTURAL INEQUITIES THAT
WERE LAID BARE WAS NOTED AS AN
EMERGING ISSUE ACROSS THE
GROUPS.
AND THEN THERE'S ONE QUOTE
HIGHLIGHTED WITHIN THIS TOPIC.
THE INDIVIDUAL STATED, WE ARE
STILL SURROUNDED BY A WHITE MALE
ENVIRONMENT IN THE WORKPLACE.
IT IS MORE OF WHAT CHECKING THE
BOX IS WHAT MATTERS AND WHAT I
AM WONDERING IS IF THERE IS A
MECHANISM THAT THERE IS A
GENUINE STRUCTURAL CHANGE TO
FOSTER A MORE DIVERSE AND
INCLUSIVE ENVIRONMENT WITHOUT
INSTRUMENTALLIZING THE MINORITY
GROUPS THAT ARE ACCEPTED INTO
THOSE SPACES.
THE GROUPS DISCUSSED CHALLENGES
IN CAREER, PATHWAYS AND
WORKFORCE.
THE INTO PROFESSIONAL CAREERS OF
UNDERREPRESENTED RACIAL AND
ETHNIC MINORITY PERSONS.
THE SUBTHEMES OR OBSERVATIONS
WERE AROUND LIMITED
OPPORTUNITIES FOR STEM EDUCATION
IN GRADES K THROUGH 12, AS WELL
AS FORM ADVANCEMENT AT THE
GRADUATE AND FACULTY MEMBER
LEVELS.
THEY ALSO REFLECTED ON RESOURCE
INEQUITIES AT SMALLER
INSTITUTIONS THAT MAKE IT
DIFFICULT TO COMPETE FOR
TRAINEES AND INVESTIGATORS AS
WELL AS RETAIN THEM.
THIRD, AND THIS WAS A LOUD AND
CLEAR SUBTHEME, LACK OF
REPRESENTATION AND MENTORSHIP
OPPORTUNITIES, INCLUDING THE
PERCEPTION THAT THERE ARE FEW
UNDERREPRESENTED MINORITY ROLE
MODELS AT ALL LEVELS, WHICH
ADVERSELY AFFECTS ENTRY INTO
BIOMEDICAL SCIENCE AND
ADVANCEMENT.
THERE WAS ALSO A SUBTHEME
REFLECTING THE MINORITY TAX,
WHICH IS AS WE KNOW IT AN
ADDITIONAL BURDEN THAT DETRACTS
FROM PRODUCTIVITY POTENTIALLY.
ONE QUOTE HIGHLIGHTED WITHIN
THIS TOPIC, WE NEED TO BE
INTENTIONAL ABOUT GIVING
OPPORTUNITIES AND GIVE BLACK
STUDENTS WHO ARE REALLY INVESTED
IN THESE PATHWAYS.
IT HAS TO BE MORE HOLISTIC ABOUT
HOW WE TREAT OUR YOUTH.
HOW DO WE REMOVE THESE BARRIERS
FOR OUR YOUTH?
THERE WAS AN INTENTIONAL MOVE TO
BUILD THESE BARRIERS, SO WE MUST
BE AS INTENTIONAL TO BREAK DOWN
THESE BARRIERS THAT WERE BUILT.
THERE WERE MANY COMMENTS ABOUT
NIH FUNDING STRUCTURES THAT
POTENTIALLY DISADVANTAGE
UNDERREPRESENTED MINORITY
SCIENTISTS AND MINORITY SERVING
INSTITUTIONS, INCLUDING THE
COMPLEXITY OF THE GRANT
SUBMISSION SYSTEM AND THE FORMS.
ALSO THERE WERE PERCEPTIONS OF
DEEP BIASES DURING SCIENTIFIC
REVIEW BASED ON PANEL
COMPOSITION AND RESEARCH TOPICS,
AND ALSO BIASES ABOUT THE
ENVIRONMENT AT MINORITY SERVING
INSTITUTIONS AND BEING PERCEIVED
AS INADEQUATE, THE INVESTIGATORS
BEING PERCEIVED AS LESS
QUALIFIED.
ONE QUOTE HIGHLIGHTED WITHIN
THIS TOPIC, THE SCORING CRITERIA
FAVORS R1 AND R2 INSTITUTIONS,
FOLKS WHO HAVE ESTABLISHED
REPUTATIONS AND A HISTORY OF
CITED RESEARCH.
WHEN THEY TALK ABOUT THE TEAM
AND RESEARCH ENVIRONMENT, THEY
ARE NOT TALKING ABOUT PEOPLE
LIKE ME WHO SERVE COMMUNITIES OF
COLOR.
WE HEARD THAT THERE IS A NEED TO
INCREASE FUNDING FOR MEANINGFUL
HEALTH DISPARITIES RESEARCH THAT
SERVES COMMUNITY NEEDS.
PARTICIPANTS WERE CONCERNED
ABOUT THE PRODUCTION OF HEALTH
DISPARITIES TOURISM AND LACK OF
CULTURAL KNOWLEDGE PSH AS WELL
AS RI RACIAL -- THERE WAS ALSO A
SUBTHEME AROUND THE CHALLENGE OF
CULTURALLY INCOMPETENT
COMMUNICATION WHICH IF RESOLVED
COULD IMPROVE MEANINGFUL
INCLUSION IN CLINICAL RESEARCH.
ONE QUOTE HIGHLIGHTED WITHIN
THIS TOPIC, IT IS IMPORTANT TO
HAVE -- SOME IN THE FIELD ARE
STARTING TO USE THE TERM
"CONTEXT EXPERT" TO SIGNIFY THAT
MANY ARE EXPERTS IN THEIR OWN
COMMUNITY, CONDITION, CONTEXT
AND CULTURE, THEY ADVOCATE FOR
CONTEXT EXPERTS TO BE PAID JUST
AS MUCH AS CONTENT EXPERTS.
SO FINALLY THE GROUPS DISCUSSED
CHALLENGES IN ADDRESSING
HEALTHCARE EQUITY AND HEALTH
OUTCOMES, AND THE OVERALL THEME
WAS THAT EXISTING BARRIERS AND
BIAS REDUCED THE QUALITY OF
HEALTHCARE AND OUTCOMES AMONG
RACIAL AND ETHNIC MINORITY
PATIENTS.
THE BARRIERS INCLUDED
INSUFFICIENT PATIENT ADVOCACY
ACROSS THE HEALTHCARE SYSTEM,
THE UNDERREPRESENTATION OF
RACIAL AND ETHNIC MINORITY
PERSONS ON MEDICAL TEAMS, LACK
OF CULTURAL HUMILITY, AND LACK
OF UNDERSTANDING REGARDING THE
REASONS THAT HEALTHCARE DISTRUST
EXISTS.
FINALLY, PARTICIPANTS DISCUSSED
THE ADVERSE IMPACT OF SOCIAL
DETERMINANT OF LET CHALLENGES
SUCH AS TRANSPORTATION TO
MEDICAL VISITS AND PROBLEMS
ACCESSING MEDICATION, WHICH
IMPACT OUTCOMES.
ONE QUOTE HIGHLIGHTED WITHIN
THIS TOPIC, IT IS IMPORTANT TO
HAVE INCREASED REPRESENTATION IN
ALL MEDICAL FIELDS.
CLINICAL AND NON-CLINICAL FIELDS
WITHIN A HEALTHCARE SETTING.
THAT IS ONE OF THE BIGGEST
OBSTACLES WE HAVE FACED IN
HEALTH EQUITY WORK.
IT'S HARD TO ADDRESS IMPLICIT
BIAS WHEN WE DON'T HAVE WORKERS
WHO LOOK LIKE THE POPULATIONS
THEY SERVE.
SO THE FINAL TOPICS RAISED
DURING THE SESSIONS WERE ON
ACTIONS BEING TAKEN AT THEIR
ORGANIZATIONS OR INSTITUTIONS
AND PROPOSE SOLUTIONS FOR THESE
COMPLEX ISSUES.
AND THE PROPOSED SOLUTIONS WERE
FRAMED USING THE SOCIOECOLOGICAL
MODEL FROM INDIVIDUAL TO
COMMUNITY LEVEL ACTIONS AND
POSSIBLE SOLUTIONS.
SO LET'S TAKE A LOOK AT A FEW.
SO THIS IS A SUMMARY OF THE
ACTIONS AND INITIATIVES THAT
PARTICIPANTS REPORT WERE HAD
HAPPENING AT THEIR OWN
INSTITUTIONS.
SO I'LL JUST READ A FEW EXAMPLES
HERE IN THE SPACE OF CULTURAL
COMPETENCY TRAINING, HOLDING
GROUP DISCUSSIONS ABOUT DEIA,
AUGMENTING MENTORSHIP PROGRAMS,
AND LEVERAGING VIRTUAL PLATFORMS
TO ENGAGE COMMUNITIES IN
WEBINARS AND TOWN HALLS, AND
ALSO ABOUT COVID-19 AND HOW THAT
WAS HELPFUL IN THAT AREA, AND
ALSO TO OBTAIN INPUT IN
COMMUNITIES USING VIRTUAL
PLATFORMS ON POSSIBLE
INITIATIVES THAT THEY COULD
UNDERTAKE.
THE PROPOSED SOLUTIONS DIRECTED
AT NIH TO CONSIDER WERE AT THE
INSTITUTIONAL AND COMMUNITY
LEVELS.
EXAMPLES INCLUDED BUILDING IN
ACCOUNTABILITY FOR DEIA AMONG
APPLICANTS AND GRANT RECIPIENTS,
CHANGING APPLICATION
REQUIREMENTS, INCENTIVES AND
TIMELINE TO SUPPORT CAPACITY
BUILDING, AND INCREASE
INVESTMENTS IN HEALTH
DISPARITIES AND COMMUNITY-BASED
PARTICIPATORY RESEARCH.
COMMUNITY LEVEL SOLUTIONS WERE
OFFERED INCLUDING THE IMPORTANCE
OF DATA DISAGGREGATION AND
MECHANISMS TO DO THAT, TRACK,
SHARE INFORMATION TO ADDRESS
STRUCTURAL RACISM, MORE
VISIBILITY INTO HISTORICAL AND
CURRENT DIVERSE ROLE MODELS
WITHIN THE BIOMEDICAL SCIENCES,
REALLY PUTTING THEM OUT FRONT,
AND PAIRING RESEARCH 1 AND
SMALLER INSTITUTIONS FOR GRANT
APPLICATION MENTORSHIP THAT
WOULD BE CONDUCTED IN MUTUALLY
BENEFICIAL WAYS.
CAN YOU ALSO READ YOU CN
THE INITIATIVES WEBSITE.
SO I WANT TO ACKNOWLEDGE AND
THANK THE U COMMITTEE CO-CHAIRS,
MEMBERS, STAFF LEADS FOR THEIR
CONTRIBUTIONS TO THIS WORK, AS
WELL AS THE PARTICIPANTS IN
THESE SESSIONS FOR JOINING US TO
SHARE THEIR REALLY IMPORTANT
INSIGHTS.
AND I THANK YOU ALL FOR
LISTENING.
PUN INTENDED.
THANKS.
>> GREAT, THANKS, MONICA.
AND I THINK, AGAIN, WE'LL HOLD
ALL QUESTIONS UNTIL THE END, BUT
WE'LL SWITCH NOW TO THE N
COMMITTEE, THEIR UPDATE.
>> HELLO.
I'M HERE PRESENTING ON BEHALF OF
THE N COMMITTEE PORTION OF THE
UNITE INITIATIVE AS WELL AS
REPRESENTING MY CO-CHAIRS, ROB
AND MICHELLE.
SO OUR CHARGE HAS REALLY BEEN TO
MARSHALL THE APPROPRIATE
RESOURCES IN THE AREAS OF HEALTH
DISPARITIES, HEALTH EQUITY AND
MINORITY HEALTH RESEARCH TO
REALLY HAVE AN IMPACT AT THE
POPULATION HEALTH LEVEL ON
REDUCING DISPARITIES AND
IMPROVING THE HEALTH OF
MARGINALIZED POPULATIONS IN OUR
COUNTRY.
AND I'LL JUST REACQUAINT YOU
THAT OUR THREE PRIORITY AREAS
WERE, ONE, TO INCREASE THE
AMOUNT OF FUNDING THAT IS
OCCURRING IN THESE AREAS ON THE
PART OF NIH.
TWO, TO REALLY ENSURE
TRANSPARENCY AND ACCOUNTABILITY
IN THAT FUNDING.
AND THEN THREE, TO REALLY HELP
NIMHD FULFILL ITS CHARGE OF
ENSURING THAT WE MEET OUR
NIH-WIDE STRATEGIC PLAN, AS WELL
AS COORDINATION AND ELIMINATING
REDUNDANCY IN OUR EFFORTS AND
REALLY MAXIMIZING THE DOLLARS
THAT ARE BEING SPENT IN THESE
AREAS.
SO PRIORITY ONE, TO ACHIEVE
EQUITABLE SUPPORT FOR THIS TYPE
OF RESEARCH.
IT IS A -- IT'S BEEN MENTIONED
BEFORE THAT WE HAD TWO FISCAL
YEAR '21 FOAs THAT CAME UNDER
THE COMMON FUND INITIATIVE, AND
I'LL SAY THAT THOSE 11 PROJECTS
THAT WERE FUNDED WERE LED BY A
COMMITTEE THAT WAS SO DEDICATED,
LID
LED BY SHANNON AND JANINE
CLAYTON, AND THAT PRODUCED SOME
AMAZING PROJECTS THAT WE'LL SEE
RESULTS HOPEFULLY AT THE
POPULATION LEVEL IMPACT
MEASURABLE RESULTS.
WE'VE RECENTLY -- NIH RECENTLY
RE-RELEASED THE MSI FOA.
THOSE TWO INITIAL FOAs, ONE
WAS SPECIFIC TO MSIs AND THE
OTHER WAS GENERAL.
AND SO MORE FUNDING WAS PUT INTO
THE MSI FOA AND APPLICATIONS ARE
CURRENTLY BEING ACCEPTED FOR
THAT.
AND IN ADDITION, STAKEHOLDER
TECHNICAL ASSISTANCE SESSIONS
HAVE BEEN PROVIDED TO POTENTIAL
APPLICANTS TO THOSE FOAs, AND
WEB DEVELOPMENT HAS OCCURRED
WHERE THE COMMON FUND NOW HAS
CENTRALIZED AREA OF THE WEBSITE
WHERE OUTSIDE CONSTITUENTS CAN
ACCESS INFORMATION ON THOSE
FUNDING OPPORTUNITIES.
AND THEN A MUCH LARGER
INITIATIVE, THE COMMUNITY
PARTNERSHIPS TO ADVANCE SCIENCE
FOR SOCIETY OR THE COMPASS
INITIATIVE, THERE WAS A MUCH
LARGER COMMITTEE AND WORKING
GROUP THAT WAS DEVELOPED AND PUT
FORTH UNDER THE COMMON FUND
INITIATIVE MECHANISM THAT IS, TO
DEVELOP THIS CONCEPT FOR
COMPASS, WHICH WAS THEN APPROVED
BY THE COUNCIL OF COUNCILS, AND
THIS RESULTED IN A 10-YEAR
PROGRAM BUDGET OF ALMOST
$400 MILLION.
CURRENTLY WE'RE AWAITING THE MSI
APPLICATIONS FROM THAT FOA
RE-RELEASE THAT TARGETED THESE
POTENTIALLY UNDERRESOURCED
INSTITUTIONS, AND THE TECHNICAL
ASSISTANCE HAS BEEN PROVIDED.
WE'RE AWAITING THE APPLICATIONS
AND WE'LL PROCEED TO EVALUATE
THOSE WHEN THEY GET HERE, NOT
OUR COMMITTEE, BUT NIH.
AND THEN WE'LL PREPARE FOR THE
RELEASE OF THE FISCAL YEAR
'23 COMPASS FUNDING
ANNOUNCEMENTS AS WELL.
AND THEN BEHIND THE SCENES,
WE'RE CONTINUING TO EXPLORE
IC-SPECIFIC INITIATIVES THAT
COULD ADVANCE EQUITY IN FUNDING
IN THESE AREAS OF RESEARCH.
WHICH WILL BE THE ULTIMATE
METRIC OF SUCCESS.
OUR SECOND PRIORITY AREA WAS TO
ACHIEVE TRANSPARENCY AND
ACCOUNTABILITY IN TRACKING THESE
AREAS OF RESEARCH DEVOTED TO
HEALTH DISPARITIES AND MINORITY
HEALTH AND HEALTH EQUITY.
AND SO OUR N DATA WORKING GROUP
LED BY CHRISTINE, NATE AND CATHY
HAS BEEN WORKING AND MEETING
DILIGENTLY ON FRIDAY AFTERNOONS,
WORKING ON DEVELOPMENT OF A
PROTOTYPE OF THE DASHBOARD,
WORKING WITH JUDY BRIG BEE BY E
OFFICE OF EXTRAMURAL RESEARCH
AND PORTFOLIO ANALYTICAL EXPERTS
ACROSS NIH TO DEVELOP AN
AUTOMATED, ACCURATE SYSTEM FOR
TRACKING OUR NIH INVESTMENTS IN
THESE KEY AREAS OF RESEARCH.
AND SO AS WE MOVE FORWARD IN
PROGRESS, WE'RE DOING A SUBJECT
MATTER EXPERT REVIEW OF THOSE
CATEGORIES AND THE ONTOLOGIES,
THE CODING STRUCTURES TO BE
IMPLEMENTED TO IN AN AUTOMATED
WAY CAPTURE THE EXTENT OF THE
FUNDING SO IT CAN BE TRACKED
OVER TIME, AGAIN, ENSURING
SUSTAINABILITY OF THE EFFORT
NEEDED TO REALLY REDUCE
DISPARITIES IN OUR COUNTRY.
AND OUR NEXT STEPS AS I
MENTIONED WILL BE TO CONTINUE TO
DEVELOP AND OPERATIONALIZE THE
DASHBOARD, COMPLETE THE SUBJECT
MATTER EXPERT REVIEW, DEVELOP
TEST USE CASES, AND REALLY TEST
THE SYSTEM BEFORE IT GOES LIVE.
AND OUR METRICS OF SUCCESS WILL
BE THE ACCURACY OF OUR TRACKING
IN THESE AREAS, AND OUR ABILITY
TO ENGAGE THE ICs IN USING THE
TOOL TO EVALUATE THEIR OWN
PROGRESS TOWARD THE NIH-WIDE
STRATEGIC PLAN ON HEALTH
DISPARITY AND MINORITY HEALTH.
OUR FINAL PRIORITY IS FOCUSED ON
HELPING NIMHD FULFILLITY
LEGISLATIVE FULFILLE
TO HELP COORDINATE HEALTH
DISPARITIES RESEARCH ACROSS NIH
AND ALSO TO ACHIEVE THE
STRATEGIC PLAN INITIATIVES THAT
APPLY TO EVERY IC AND AT NIH TO
CRITICALLY REDUCE MEASURABLE --
IN A MEASURABLE WAY HEALTH
DISPARITIES IN OUR COUNTRY, AND
IMPROVE HEALTH EQUITY.
AND SO WHAT WE'VE DONE IS, WE
MADE A RECOMMENDATION AS THE N
COMMITTEE THAT A RESEARCH
COORDINATING WORKING GROUP BE
REINVIGORATED AND INFORMED O
NEWLY ADDRESS THIS COORDINATION
EFFORT, AND THAT WOULD BE UNDER
THE DIRECTION OF THE NIMHD
DIRECTOR TO OVERSEE FORMATION
AND IMPLEMENTATION OF THAT WORK
GROUP, WHICH WOULD HAVE
REPRESENTATION OF N COMMITTEE
MEMBERS AS WELL AS IC-WIDE
REPRESENTATION.
SO THE NEXT STEPS WILL BE TO
ASSIST NIMHD AND SUPPORT THEIR
EFFORTS IN IMPLEMENTING THIS
TRANS-NIH WORKING GROUP FOCUSED
ON FUNDING IN THESE KEY AREAS,
AND THEN OUR METRICS, OUR
ULTIMATE METRICS OF SUCCESS WILL
BE, ARE WE ACHIEVING THAT
NIH-WIDE STRATEGIC PLAN GOALS
RELATED TO MINORITY HEALTH AND
HEALTH DISPARITIES RESEARCH, AND
REALLY SUSTAINING AN INTENSE
EFFORT TO FUND THESE AREAS OF
RESEARCH ACROSS THE BOARD,
ACROSS THE ICs AND ACROSS NIH,
AND ITS OFFICES AS WELL AS
INSTITUTES.
AND FINALLY, I'D LIKE TO, IN THE
LAST SLIDE, ACKNOWLEDGE ALL THE
MEMBERS WHO HAVE SO DILIGENTLY
WORKED TOWARD THESE THREE
PRIORITY AREAS, AND REALLY
WELCOME ANY QUESTIONS AT THE END
OR COMMENTS.
THANK YOU.
>> WE'RE DOING REALLY WELL ON
TIME.
ALL RIGHT.
NOW I THINK WE'LL TURN IT OVER
TO MARIE, WHO'S GOING TO GIVE US
AN UPDATE FROM THE I COMMITTEE.
>> SO IF I WERE HOME, I WOULD
PULL OUT MY HATS BECAUSE I LIKE
TO TALK ABOUT THE FACT THAT I
WEAR MULTI-PAL HATS.
I HAVE THE PRIVILEGE OF
CO-LEADING THE WORKING GROUP,
UNITE AS A WHOLE AND I AM A
CO-CHAIR OF THE UNITE I
COMMITTEE.
DR. ARCHER AND DR. ALFRED
JOHNSON AND I CO-LEAD THIS
EFFORT, AND WE COULDN'T CONVINCE
TREVOR TO COME FROM HIS
SCIENTIFIC MEETING AND MAKE THIS
PRESENTATION SO I'M MAKING IT ON
BEHALF OF THE GROUP.
SO THE CHARGE FOR THE I
COMMITTEE IS TO CHANGE THE NIH
ORGANIZATIONAL CULTURE AND
STRUCTURE TO PROMOTE DIVERSITY,
EQUITY AND INCLUSION THROUGHOUT
THE NIH WORKFORCE, WHICH IS
SOMETHING THAT IS THE GOAL OF
THE OFFICE OF EQUITY, DIVERSITY
AND INCLUSION AND ALL THE
INSTITUTES, CENTERS AND OFFICES.
SOME OF THE THINGS THAT WE'VE
DONE IN TERMS OF OUR PRIORITIES,
WE WERE THE GROUP THAT
RECOMMENDED THE ESTABLISHMENT OF
THE ANTI-RACISM STEERING
COMMITTEE, BUILDING FROM WHAT
WAS SEEN TO BE SUCCESSFUL IN THE
ANTIHARASSMENT STEERING
COMMITTEE IN 2018.
AND AS HAS BEEN MENTIONED HERE,
SOME 500-PLUS MEMBERS OF THE
GROUP, LOTS OF SUBCOMMITTEES
THAT ARE DEVELOPING SPECIFIC AND
ACTIONABLE PROPOSALS, AND THERE
WILL BE A PROPOSAL AT THE END OF
THIS THAT I'LL BE SHARING THAT
CAME FROM THE ARSC.
THIS SHOWS YOU THE STRUCTURE OF
THE ANTI-RACISM STEERING
COMMITTEE.
AS WITH UNITE AS A WHOLE,
ALFRED, TARA AND I ARE CO-CHAIRS
OF THIS, SUPPORTED BY MS. LEAH
BUTLER, SOME 11 DIFFERENT
GROUPS.
AS YOU CAN SEE, THERE ARE SIX
GROUPS THAT HAVE PRETTY
OVERLAPPING GOALS, WHETHER IT'S
LOOKING AT THE EXTRAMURAL,
INTRAMURAL OR NON-SCIENTIFIC
STAFF, AND THEY'VE REALLY BEEN
WORKING HARD IN TRYING TO GET
THEIR ARMS AROUND WHAT IS GOING
ON HERE AT NIH AND WHAT ARE THE
THINGS THAT CAN BE DONE TO
ENHANCE THE ENVIRONMENT FOR ALL.
WE ARE THE GROUP THAT ALSO MADE
THE RECOMMENDATION FOR RACIAL
AND EQUITY PLAN THAT HAS BEEN
MENTIONED SEVERAL TIMES ALREADY.
I WILL SAY INSTITUTES AND
CENTERS REALLY LEANED INTO THIS
EFFORT.
THEY SUBMITTED EVERYTHING ON
TIME, APRIL 1.
THOSE REEPs, AS WE CALL THIS,
HAVE NOW BEEN REVIEWED BY THE
OFFICE OF DIVERSITY, EQUITY AND
INCLUSION AND SCORED AGAINST A
METRIC CALLED A MATURITY MODEL
PUT OUT BY THE OFFICE OF
PERSONNEL MANAGEMENT.
LEVEL 1 BASICALLY YOU JUST CHECK
THE BOXES, LEVEL 3, YOU HAVE A
VERY WELL DEVELOPED PLAN, LEVEL
2 IN BETWEEN.
I CAN TELL YOU THAT THE
INSTITUTES AND CENTERS HAVE ALL
AT LEAST MADE TO LEVEL 2 IN
TERMS OF THIS BASELINE
INFORMATION THAT'S BEEN PROVIDED
AND BASELINE SET OF PLANS.
SO IT WILL BE EXCITING TO SEE AT
THE END OF THE FISCAL YEAR HOW
MUCH PROGRESS THEY'VE BEEN ABLE
TO MAKE AND WHAT THEY INVISION
DOING FOR FISCAL YEAR '23, BUT
THE EXPECTATION THAT THIS WILL
BE REVISITED AT LEAST ON AN
ANNUAL BASIS.
WHAT WAS DONE, THIS IS
SOMETHING -- THERE'S BEEN A
REQUEST FOR WHAT CAN BE
REPLICATED.
HERE IS A PROCESS THAT WE USED
FOR EACH OF THE INSTITUTES AND
CENTERS IN DEVELOPING THE
REEPs THAT COULD BE REPLICATED
AT AN INSTITUTION.
SO FIRST IN TERMS OF
ESTABLISHING THE PLANS, IT
WAS -- OUTSIDE CONSULTANT,
INSTITUTES AND CENTERS WERE
ADVISED TO ADOPT A RACIAL AND
EQUITY LENS AND LOOKING AT
EVERYTHING IN THEIR LANDSCAPE,
USING OBJECTIVE DATA,
QUALITATIVE DATA, TO THEN
PREPARE AN APPROACH, DEVELOPING
LEADERSHIP, ESTABLISHING
INFRASTRUCTURE, DETERMINE WHAT
YOUR OVERARCHING GOALS WILL BE,
IDENTIFYING AREAS ENGAGING AS
MANY OF THE INSTITUTES AND
CENTERS AS POSSIBLE AND TO MOVE
FORWARD IN DESIGNING,
IMPLEMENTING AND REPORTING WHAT
IT IS THEY WANTED TO WORK ON FOR
THIS FIRST STRETCH, AND THEN
CONTINUOUS IMPROVEMENT PROCESS
THEREAFTER.
SO THE GOALS ARE TO APPLY THE
RACIAL AND ETHNIC EQUITY LENSZ O
EVERYTHING, WORKFORCE,
STRUCTURES AND SYSTEMS, IDENTIFY
AND ADDRESS ANY DISPARITIES THAT
ARE SEEN AND THEN ENHANCE THE
DIVERSITY OF THE WORKFORCE BASED
ON THOSE IDENTIFIED
OPPORTUNITIES.
RM ANOTHER PRIORITY FOR OUR
COMMITTEE HAS BEEN THE
GENERATION OF RELIABLE AND
ACCESSIBLE DATA REGARDING THE
DEMOGRAPHICS OF THE NIH
EXTRAMURAL STAFF.
YOU WOULD THINK THAT THAT WOULD
BE AN EASY GOAL, BUT WHAT WE
HAVE FOUND IS THAT DATA ARE
REPORTED IN DIFFERENT WAYS AND
IN DIFFERENT PLACES, AND THE
GOAL HERE HAS BEEN TO BRING IT
ALL TOGETHER, PARTICULARLY WHEN
IT COMES TO OUR EXTRAMURAL
PROGRAM STAFF AND SCIENTIFIC
REVIEW OFFICERS.
SO THAT A TEAM WORKING VERY
CLOSELY WITH THE OFFICE OF HUMAN
RESOURCES, WITH THE OFFICE OF
EQUITY, DIVERSITY AND INCLUSION
AND LOTS OF VOLUNTEERS ARE
PULLING THIS TOGETHER SO THAT WE
CAN GET A BETTER SENSE OF THAT,
AND TO DETERMINE WHETHER THERE
ARE STRATEGIES WE NEED TO PUT IN
PLACE TO ENHANCE AND SUPPORT
DIVERSITY AMONG THOSE VERY
IMPORTANT NIH STAFF MEMBERS.
WE ALSO, AS DATA WAS BEING
GATHERED, CAME TO RECOGNIZE THAT
THERE ARE DISPARITIES IN TERMS
OF WHO GETS AWARDS HERE AT NIH.
I MENTIONED THAT BRIEFLY WHEN WE
WERE TALKING ABOUT
ACCOMPLISHMENTS OR ACTIONS TO BE
REPORTED IN THE DEIA PLAN, THIS
CAME ABOUT AS A RESULT OF THE
PEOPLE IN THE I COMMITTEE AND
BEYOND, AND LED TO THAT
BROADENING OF ONE OF THE -- IN
ADDITION TO THE CATEGORY FOR
THIS FISCAL YEAR, WORK IS BEING
DONE TO BROADEN THE CATEGORIES
FOR FISCAL YEAR '23 AND BEYOND.
AND THEN THIS IS AN EXAMPLE OF
SOMETHING THAT CAME FROM THE
ANTI-RACISM STEERING COMMITTEE.
ONE OF THE SUBGROUPS MADE THE
OBSERVATION THAT JOBS AT NIH ARE
NOT NECESSARILY WELL-KNOWN TO
PEOPLE OUTSIDE OF NIH, AND
THEY'RE ADVERTISED FOR SUCH A
BRIEF PERIOD OF TIME THAT PEOPLE
THINK THERE'S SOMEONE ALREADY
SELECTED FOR THE POSITION BUT
THAT'S NOT THE CASE.
SO THE IDEA THAT WAS BROUGHT
FORWARD WAS TO DEVELOP A
LISTSERV FROM FEDERAL AFFINITY
GROUPS AND OTHERS INTERNAL, ERK
TERNL NIH TO MAKE THEM AWARE OF
VACANCY ANNOUNCEMENTS AS THEY
DEVELOPED.
WE HAVE BEEN VERY GRATEFUL THAT
THE OFFICE OF HUMAN RESOURCES,
THEY'VE AGREED THIS IS
IMPORTANT, THEY'RE GOING TO TAKE
THE LEAD IN MAKING THIS HAPPEN
SO THIS IS A WIN IN TERMS OF THE
RECOMMENDATION THAT'S BEING
IMPLEMENTED THROUGH THE THOUGHT
PROCESSES OF THE ANTI-RACISM
STEERING COMMITTEE.
SO AS WITH ALL THE OTHER
COMMITTEE COCHAIRS, I WOULD LIKE
TO REALLY THANK EVERYONE ON THE
I COMMITTEE.
DR. TREVOR ARCHER, WHO REALLY
KEEPS US GOING, ALFRED AND I ARE
SUPPORTIVE, BUT TREVOR DOES THE
HEAVY LIFTING.
DR. SHELMA MIDDLETON LITTLE AND
YOU CAN SEE EVERYONE ELSE LISTED
HERE.
>> I THINK AMY WILL BE THE
PRESENTER.
>> OKAY, THANK YOU SO MUCH.
AND THANK YOU, MARIA.
THAT WAS GREAT.
I'M PRESENTING TODAY ON BEHALF
OF MY CO-CHAIR, JOHN BURKLOW AND
OUR EXCEPTIONAL NEW STAFF LEAD.
SO OUR GOAL IS TO ENSURE
TRANSPARENCY, ACCOUNTABILITY AND
SUSTAINABILITY OF THE WORK OF
ALL THE COMMITTEES YOU HAVE
HEARD ABOUT TODAY.
WE SHARE INFORMATION INTERNALLY
WITHIN NIH.
WE FACILITATE COMMUNICATION
ACROSS THE INSTITUTES AND
CENTERS, AND WE WORK WITH A
NUMBER OF DIFFERENT
COMMUNICATION EXPERTS TO ENSURE
ALSO OUTREACH TO EXTERNAL
STAKEHOLDERS.
SO BOILING DOWN ALL OF OUR
PRIORITIES, SORT OF INTO ONE, WE
ARE FOCUSED ON DEVELOPING
RESOURCES TO COMMUNICATE UNITE
EFFORTS INTERNALLY AND
EXTERNALLY, AND WE ARE STRONGLY
COMMIT TODAY AND AWARE THAT IN
ORDER TO CHANGE THE CULTURE
AROUND DIVERSITY, EQUITY,
INCLUSION AND ACCESSIBILITY AT
NIH AND IN THE BIOMEDICAL
RESEARCH ECOSYSTEM, WE NEED TO
PUT IN PLACE THE INTERVENTIONS
YOU'VE HEARD ABOUT TODAY, BY
ALSO NEED TO MAKE SURE THAT
EVERYONE KNOWS ABOUT THESE
EFFORTS.
JUST LIKE SCIENCE IS NOT
FINISHED UNTIL IT IS
COMMUNICATED, WE NEED TO MAKE
SURE THAT THESE EFFORTS ARE
CLEARLY AND CONSISTENTLY
COMMUNICATED SO THEY CAN BE
CONNECTED TO AND AMPLIFIED BY
ALL OF OUR DIFFERENT
STAKEHOLDERS.
AND I THINK THAT THE
PRESENTATION EARLIER FROM THE U
COMMITTEE REALLY HIGHLIGHTED THE
REALLY IMPORTANT AND PERSISTENT
GAPS IN THAT SPACE, AND THERE'S
A LOT OF WORK FOR US TO CONTINUE
TO DO HERE.
AND I'M JUST REALLY GRATEFUL
THAT NIH HAS PUT THIS T
COMMITTEE TOGETHER AND
RECOGNIZED THE VALUE OF THAT
COMMUNICATION EFFORT.
SO WE HAVE PREVIOUSLY SHARED
THAT WE WORKED TO LAUNCH THE
ENDING STRUCTURAL RACISM
WEBPAGES AND WE CONTINUE TO WORK
WITH THE NIH OFFICE OF
COMMUNICATION AND PUBLIC LIAISON
AND COMMUNICATION EXPERTS IN THE
OFFICE OF SCIENTIFIC WORKFORCE
DIVERSITY AND OTHERS ACROSS NIH
TO PROVIDE ONGOING CONTENT
DEVELOPMENT AND STRATEGY FOR
THESE PAGES.
THIS ALSO INCLUDES WORKING WITH
OUR DATA SCORES ACROSS NIH TO
UPDATE THE RACIAL AND
ETHNOGRAPHIC DATA IN THE
DASHBOARD.
THIS DASHBOARD OFFERS AN AT A
GLANCE OVERVIEW OF THE VARIOUS
TATA VERDE TA,
INCLUDING OUR FUNDED WORKFORCE
AND OUR STAFF, HEALTH DISPARITY,
HEALTH EQUITY RESEARCH
INVESTMENTS AND MORE.
YOU HEARD EARLIER TODAY FROM
TARA ABOUT THE IMPORTANCE OF
DATA AND THAT THE VALUE OF THAT
HAS BEEN HIGHLIGHTED IN ONE OF
UNITE'S STATED GOALS, AND WE
THINK THIS IS AN IMPORTANT WAY
TO REALLY AMPLIFY AND MAKE TANS
PARENT THOSE
TRANSPARENT THOSE EFFORTS.
WE ALSO ARE WORKING TO ENHANCE
THE NIH INTRANET SITE.
ONE OF THE THINGS WE PROVIDE
THERE IS A TOOLKIT OF THE UNITE
RESOURCES TO HELP NIH INSTITUTES
AND CENTERS COMMUNICATE ABOUT
UNITE WITHIN.
THEIR COMMUNICATIONS WITH THEIR
INTERNAL AND EXTERNAL STAKE
HOARLDS.
WE ARE WORKING CONSTANTLY TO
HELP STAFF STAY CONNECTED WITH
THE WORK OF THE MANY UNITE
COMMITTEES.
IN AN EFFORT TO GIVE THE
COMMITTEES AN OPPORTUNITY TO
SHARE THEIR ONGOING AND HIGH
PRIORITY WORK, WE ALSO
CONTRIBUTED TO THE LAUNCH OF THE
UNITE CO-CHAIRS CORNER AND I
ENCOURAGE EVERYBODY HERE TO
CHECK THAT OUT.
EVERY MONTH ONE OF THE
COMMITTEES PUTS FORWARD A
DESCRIPTION HIGHLIGHTING SOME
REALLY VALUABLE, IMPORTANT AND
NEW ACTIVITIES THAT THEY HAVE
BEEN ENGAGED IN.
AT THE LAST MEETING AND AS TARA
MENTIONED EARLIER TODAY, WE
UNVEILED THE POWER OF AN
INCLUSIVE WORKPLACE RECOGNITION
PROJECT WHICH HAS THE GOAL OF
DIVERSIFYING THE PORTRAITURE
WITHIN THE NIH BUILDINGS AND
DIGITAL SPACES TO RECOGNIZE THE
CONTRIBUTIONS OF ALL NIH STAFF,
AND ENGENDER A SPIRIT OF
INCLUSION BY ACKNOWLEDGING THE
RICH DIVERSITY OF OUR NIH
WORKFORCE.
THAT PROJECT WAS SPEARHEADED BY
DR. SADHNAN JACKSON.
I WANT TO CALL YOUR ATTENTION TO
A POWERFUL STAT NEWS OP NED, THE
POWER OF INCLUSION OVERTURNING
THE WHITE WALL STANDARD.
THIS REALLY ELOQUENT PIECE LAYS
OUT BOTH HER ACADEMIC MEDICAL
JOURNEY AND THE GOALS AND HOPE
FOR IMPACT OF THE RECOGNITION
PROJECT.
I STROKLY RECOMMEND THAT
EVERYBODY HERE TAKE A MOMENT TO
READ IT, AND I ENCOURAGE YOU TO
SHARE IT WITH FRIENDS AND
COLLEAGUES.
WE CAN ALL THINK CREATIVELY
ABOUT HOW WE CAN CREATE A MORE
INCLUSIVE WORK ENVIRONMENT
OURSELVES.
SO WITH THAT, I'M GOING TO TAKE
A MOMENT AND SHARE THE ONGOING
WORK WE'RE DOING TO CONTINUE TO
EXPAND THE RECOGNITION PROJECT
ACROSS THE HALLS AND WALLS OF
THE NIH.
SO HERE YOU CAN SEE -- OH, THANK
YOU SO MUCH, TARA, FOR PUTTING
THE LINK IN THE CHAT.
THAT'S PER FENGT.
YOU CAN SEE SOME OF THE ONGOING
ARTWORK REFLECTING THE
EVER-EXPANDING CROSS-SECTION OF
STAFF THAT WE ARE HOPING TO
REFLECT IN THIS EFFORT, ALONG
WITH THE INSPIRATIONAL QUOTES.
THIS JUST GIVES YOU THREE
DIFFERENT BUILDINGS WHERE WE ARE
BEGINNING TO EXPAND FOR
INSTALLATION OF THIS ART.
AND HERE YOU CAN SEE ADDITIONAL
EFFORTS IT HIGHLIGHT THIS, NOT
JUST BROADLY ACROSS ALL STAFF
BUT ALSO TO REFLECT I THINK THE
COMMITMENT OF NIH TO DIVERSITY
AT THEIR LEADERSHIP LEVEL.
SO I JUST REALLY, REALLY
APPRECIATE THAT, AND I HOPE THAT
EVERYBODY HAS HAD A CHANCE TO
CHECK THIS OUT.
IF NOT IN PERSON, AT LEAST
VIRTUALLY.
SO WE ARE NOW GOING TO TALK A
LITTLE BIT ABOUT OUR ONGOING AND
NEW PRIORITIES.
WE ARE WORKING CLOSELY WITH
COMMUNICATION EXPERTS TO DEVELOP
A COMPREHENSIVE COMMUNICATION
PLAN LEVERAGING THE UNITE GOALS.
WE HOPE THAT THIS WILL BE READY
LATER IN SUMMER 2022, BUT I
THINK THAT IT'S REALLY IMPORTANT
TO NOTE THAT THE GOALS THAT TARA
OUTLINED EARLIER ARE GOING TO
PROVIDE AN INCREDIBLY IMPORTANT
CENTRAL CLARIFYING ORGANIZING
THRUST FOR THAT COMMUNICATION
PLAN, BECAUSE I THINK IT HELPS
TO FOCUS OUR EFFORTS IN ENGAGING
WITH OUR DIFFERENT STAKEHOLDERS.
WE ALSO ARE DEVELOPING AN
INTERNAL COMMUNICATION PLAN OF
NIH STAFF WHO SERVE AS KNOWLEDGE
AMBASSADORS, WHO WILL SERVE AS
KNOWLEDGE AMBASSADORS, FOR UNITE
AND DEIA EFFORTS.
I WANT TO JUST TAKE A MOMENT AND
NOTE THAT NIH HAS TENS OF
THOUSANDS OF STAFF ACROSS
MULTIPLE CAMPUSES, AND BECAUSE
OF THE BROAD REACH OF STRUCTURAL
RACISM, IT IS REALLY IMPORTANT
TO MAKE EVERY EFFORT TO CONNECT
ALL OF THEM TO THE ONGOING WORK
OF UNITE.
SO WE'RE DEVELOPING A PILOT THAT
WILL LEVERAGE STAFF CONNECTED
WITH UNITE TO SERVE AS THESE
KNOWLEDGE AMBASSADORS, PROVIDING
INFORMATION TO AND GATHERING
FEEDBACK FROM THEIR PEERS AND
COLLEAGUES AND ACROSS THE
VARIOUS INSTITUTES AND CENTERS.
OUR HOPE IS THAT THIS WILL
FACILITATE ENGAGEMENT AND SERVE
AS ANOTHER EFFORT TO INVOLVE OUR
TALENTED AND DIVERSE STAFF IN
UNITE.
WE ALSO HOPE EVENTUALLY TO REACH
A TIPPING POINT WHERE NIH
EMPLOYEES AND CONTRACTORS ARE
AWARE OF AND ABLE TO I
IMPLICITLY U.S. PORE THE MISSION
OF UNITE TO PER MOTOR LASTING
CHANGE AND A MORE EQUITABLE AND
INCLUSIVE WORKFORCE.
WE'RE WORKING WITH MANY OFFICES
ACROSS NIH.
INCLUDING CONTACTS AT THE
VARIOUS INSTITUTES AND CENTERS
TO FIND WAYS TO IMPROVE THE NIH
ONBOARDING PROCESS TO BE MORE
INCLUSIVE FOR NEW STAFF.
THERE ARE A NUMBER OF RESOURCES,
SPECIAL INTEREST GROUPS AND
VARIOUS OPPORTUNITIES FOR STAFF
TO ENGAGE AND CONNECT WITH FOLKS
FROM A VARIETY OF DIFFERENT
BACKGROUNDS, AND OUR HOPE IS
THAT MAKING IT EASIER FOR THESE
CONNECTIONS TO OCCUR WILL
REINFORCE THE SENSE THAT NIH
BELONGS TO EVERYONE.
WE'RE ALSO GROWING THE ABILITY
OF FOLKS TO ENGAGE WITH UNITE
THROUGH EMAIL UPDATES AND
IMPORTANTLY LINKEDIN, WHICH SORT
OF SURPRISED ME A LITTLE BIT
THAT THAT HAS BECOME ONE OF OUR
MOST IMPORTANT AND HELPFUL
PLATFORMS TO CONNECT WITH FOLKS
ACROSS THE RESEARCH ECOSYSTEM IN
A VARIETY OF PROFESSIONAL
CIRCLES.
AND FINALLY, WE ARE CONTINUING
TO EXPAND THE POWER OF THE
INCLUSIVE RECOGNITION PROJECT.
WE ARE LOOKING TO HIGHLIGHT A
BROADER CROSS-SECTION OF STAFF
AND DEVELOP MORE EXTERNAL FACING
ARTWORK THROUGHOUT CAMPUS, AND
I'M DELIGHTED TO REPORT WE'RE
DOING THIS IN COLLABORATION WITH
AN INCREASING NUMBER OF
INSTITUTES AND CENTERS.
MY OWN INSTITUTE, THE NATIONAL
INSTITUTE OF NEUROLOGICAL
DISORDERS AND STROKE IS IN THE
PROCESS OF DEVELOPING ARTWORK
THAT CELEBRATES THE DIVERSITY OF
OUR STAFF TO INSTALL ALONG OUR
WALLS.
SO I JUST REALLY WANT TO ECHO
EVERYBODY ELSE AND OUR GRATITUDE
TOWARDS THE INCREDIBLE PEOPLE
THAT SERVE ON THESE UNITE
COMMITTEES, THE T COMMITTEE
GROUP IS JUST EXTRAORDINARY, AND
THEIR THOUGHTFUL AND DEDICATED
CONTRIBUTIONS IN ADVANCING THE
GOALS OF UNITE CANNOT BE
OVERSTATED.
THANK YOU SO MUCH.
>> GREAT.
THANK YOU, AMY.
WE'LL TRANSITION TO THE LAST
COMMITTEE, ALTHOUGH DEFINITELY
NOT LEAST, AND HAVE THE A
COMMITTEE PROVIDE THEIR UPDATE.
>> GOOD MORNING, EVERYONE.
THANK YOU, TARA.
MY NAME IS ERICA, I WILL BE
PRESENTING ON BEHALF OF MY
COLLEAGUES FROM UNITE COMMITTEE
E.
AS A BRIEF REMINDER, THE CHARGE
OF OUR COMMITTEE IS TO IDENTIFY
POLICIES AND PRACTICES THAT
CONTRIBUTE TO A PERSISTENT LACK
OF INCLUSION IN FUNDING
INEQUITYING WITHIN THE RESEARCH
ECOSYSTEM AND TO DEVELOP
STRATEGIES TO ADDRESS THEM.
AGAIN AS A REMINDER, THE WORK OF
OUR COMMITTEE IS GUIDED BY A
FRAMEWORK THAT'S GROUNDED BY
FOUR MAIN PILLARS, AND THEY
INCLUDE ENHANCING CAREER
PATHWAYS FOR INDIVIDUALS FROM
UNDERREPRESENTED GROUPS,
ADVANCING EQUITY AT EXTRAMURAL
INS TUESDAYS WITH
INSTITUTIONS WITH A LENS TOWARDS
ENVIRONMENT AND CULTURE,
ADVANCING EQUITY IN NIH POLICIES
AND PROCEDURES, AS WELL AS
ENHANCING RESEARCH CAPACITY AT
MINORITY SERVING INSTITUTIONS.
SO SINCE THE LAST TIME THAT
YOU'VE HEARD FROM US, WE HAD
DEVELOPED A DRAFT SET OF INITIAL
PROPOSALS TO ADDRESS THE AREAS
THAT I OUTLINED IN THE PREVIOUS
SLIDE.
THOSE INITIAL PROPOSALS AS WELL
AS THE ONES THAT WILL COME FROM
US IN THE NEAR FUTURE WERE
INFORMED BY REVIEWING AVAILABLE
NIH DATASETS, INTERVIEWING
INTERNAL AND EXTERNAL SUBJECT
MATTER EXPERTS, AND LISTENING
SESSIONS THAT WERE CONDUCTED BY
COMMITTEE U.
WE HEARD FROM COLLEGES AND
UNIVERSITIES, HBCUs, AMERICAN
INDIAN AND ALASKA NATIVE
SOCIETIES, ET CETERA.
THEMES EMERGE AND SOME WERE
ALREADY ADDRESSED BY MONICA THIS
MORNING, BUT THEY'VE HEARD
THOSE, WE'VE HEARD THOSE AS
WELL, HELPING US TO ADDRESS THE
ADAGE, YOU CAN'T BE WHAT YOU
DON'T SEE.
WE ALSO HEARD ABOUT ISSUES
REGARDING MENTORSHIP OR LACK
THEREOF, AND ITS IMPACT ON
CAREER PROGRESSION.
THE PRESSURES THAT ARE
ENCOUNTERED BY URM FACULTY AT
PREDOMINANTLY WHITE
INSTITUTIONS, HAVING TO MAINTAIN
THEIR RESEARCH PROGRAMS WHILE
ALSO SERVING AS DIVERSITY
CHAMPIONS AND HAVING THEIR WORK
VIEWED AS COMMUNITY SERVICE, AS
WELL AS THE NEED FOR NIH -- AND
ACRESTING CAPACITY
ADDRESSING CAPACITY BUILDING.
TO MOVE THESE INTO EXECUTION, WE
HAVE ACTIVATED OUR FIRST SET OF
IMPLEMENTATION TEAMS WHICH YOU
SEE HERE ON THIS SLIDE.
THESE IMPLEMENTATION TEAMS
CONSIST OF INDIVIDUALS WHO ARE
EXPERTS IN THEIR AREA WORKING
BUSILY INTO PROGRAMS AND
POLICIES THAT WE'RE CONFIDENT
THAT WILL HELP MEET THE NEEDS
AND BARRIERS THAT PREVENT THOSE
FROM FULL PARTICIPATION IN THE
RESEARCH ECOCYST TE. FOR .
I'M GOING TO UPDATE YOU ON
ACTIVITIES OF MANY OF THESE
IMPLEMENTATION TEAMS.
FOR OUR ACTIVITIES, YOU'VE HEARD
A LOT FROM OUR COMMITTEE
REGARDING EXPANSION OF IC
PARTICIPATION IN THE SCIENCE
EDUCATION PARTNERSHIP AWARDS
PROGRAM OR THE SEPA PROGRAM.
AS OF APRIL 7TH OF THIS YEAR,
NIH PUBLISHED A NOTICE OF
PARTICIPATION FORM SEPA.
TO DATE, MORE THAN 17 NIH
INSTITUTIONS, CENTERS, OFFICES
AND THE BRAIN INITIATIVE HAVE
JOINED ALONGSIDE WITH NIGMS TO
FUND SEPA AWARDS.
OUR GOAL IS TO RECEIVE AND FUND
MORE SEPA APPLICATIONS AND WE'RE
WELL ON OUR WAY TO DOING SO.
IN ADDITION TO SEPA, THERE ARE
OTHER IMPLEMENTATION TEAM
INITIATIVES UNDERWAY.
FOR EXAMPLE, ONE OF OUR
IMPLEMENTATION TEAMS IS WORKING
TO PROVIDE A FRAMEWORK FOR HOW
NIH CAN BETTER INCORPORATE DEIA
AND MENTORING LANGUAGE INTO
FOAs THAT SUPPORT RESEARCH
ACTIVITIES.
THE ROOT OF THIS WORKING GROUP
STARTED ABOUT FIVE YEARS A WHEN
NIGMS WAS CHARGED WITH PILOTING
LANGUAGE WITHIN PARENT T32s,
ENCOURAGING INSTITUTIONS TO
IMPROVE MENTORING AND TRAINING
ENVIRONMENTS FOR ITS TRAINEES.
SO OUR CURRENT UNITE LANGUAGE
IMPLEMENTATION TEAM IS HARD AT
WORK DEVELOPING THE FRAMEWORK
FOR REVISING AND ENHANCING DEIA
AND MENTORING LANGUAGE INTO
PARENT T32 FOAs AND
POTENTIALLY DEVELOPING LANGUAGE
FOR INCLUSION IN F FOAs AS
WELL, IMPROVING MENTORING
EXPECTATIONS.
TO ENSURE THERE'S APPROPRIATE
MONITORING AND ACCOUNTABILITY
FOR MENTORS.
ANOTHER IMPLEMENTATION TEAM IS
CREATING A DIVERSITY SUPPLEMENT
MATCH MAKING PLATFORM AS A NEEDS
TO INCREASE PARTICIPATION OF
INDIVIDUALS FROM
UNDERREPRESENTED GROUPS IN THE
SBIR AND STTR PRODUCT
DEVELOPMENT ENTREPRENEURSHIP AND
RESEARCH TRAINING OPPORTUNITIES.
SO THIS PLATFORM IN ESSENCE WILL
ENABLE COMPANIES TO IDENTIFY
STUDENTS AND/OR FACULTY,
PARTICULARLY THOSE LOCATED IN
MINORITY SERVING INSTITUTIONS
THAT ARE LOOKING TO EXPLORE
OPPORTUNITIES WITH SMALL
BUSINESSES AND VICE VERSA.
SO NOW ON TO UPDATES ADVANCING
EQUITY AT INTRAMURAL
INSTITUTIONS.
WE'RE ASKING THE QUESTION HERE
OF WHY IS INSTITUTIONAL CULTURE
IMPORTANT?
AND INSTITUTIONAL CULTURE CAN BE
PERCEIVED AS THE PERCEPTIONS AND
MEANINGS THAT ARE ATTACHED TO
PROCESSES, POLICIES, PRAK PR,
THAT INDIVIDUALS EXPERIENCE
WITHIN AN INSTITUTION.
IT'S IMPORTANT BECAUSE WHILE IT
MIGHT BE UBIQUITOUS AND USUALLY
OUT OF SIGHT AND OUT OF MIND,
INSTITUTIONAL CULTURE HAS A
PROFOUND IMPACT ON EVERY WORK
ENVIRONMENT AND THE ABILITY OF
EACH PERSON WITHIN THAT
ENVIRONMENT TO EITHER SUCCEED
AND PROSPER OR NOT.
SO WHILE THE INCORPORATION OF
DEIA PRINCIPLES IS CRITICAL FOR
HARNESSING THE FULL RANGE OF
HUMAN CREATIVITY AND TALENT
NECESSARY TO DRIVE INNOVATION
WITHIN THE BIOMEDICAL RESEARCH
ECOSYSTEM, PEOPLE OF COLOR AND
MEMBERS OF OTHER MINORITIZED
GROUPS CONTINUE TO BE
UNDERREPRESENTED IN STEM FIELDS.
THAT'S NOT SOMETHING THAT IS
UNKNOWN TO US.
THEY ALSO CONTINUE TO FACE
BARRIERS TO ACADEMIC AND CAREER
ADVANCEMENT THAT OTHERS JUST
DON'T ENCOUNTER TO THE
SAME DEGREE.
SO TO ADDRESS THIS, UNITE E HAS
ESTABLISHED THE CLIMATE
IMPLEMENTATION TEAM TO FURTHER
DEVELOP A FRAMEWORK TO PROVIDE
FUNDING TO INSTITUTIONS TO MAKE
USE OF CURRENTLY AVAILABLE
VALIDATED INSTRUMENTS, FOR
EXAMPLE, LIKE THE AUDIT TOOL, TO
CONDUCT ORGANIZATIONAL CLIMATE
ASSESSMENT AND CRITICAL
SELF-STUDIES TO BETTER
UNDERSTAND THEIR OWN UNDERLYING
ISSUES THAT MAY BE CONTRIBUTING
TO THEIR INSTITUTE-SPECIFIC DEIA
CHALLENGES.
AND TO DEVELOP ACTION PLANS TO
ADDRESS THEM.
TO HELP FRAME THE IMPLEMENTATION
TEAM ACTIONS, MEMBERS HAVE
CONSULTED WITH COLLEAGUES FROM
THE AAA -- NOW THAT THIS CONCEPT
HAS BEEN CLEARED TO PROCEED
DURING THE RECENT N IGMS COUNCIL
MEETING, THE TEAM IS FOCUSED ON
FURTHER REFINING THE PROGRAM
STRUCTURE AND ALSO WRITING OF
THE FOA.
THE WORK DISPROPORTIONATELY
FALLS ON INVESTIGATORS FROM
UNDERREPRESENTED GROUPS.
YOU ALL HAD BEEN TALKING ABOUT
THIS A BIT EARLIER, REFERRING TO
IT AS THE DIVERSITY TAX.
WHILE DOING THIS WORK IS
CRITICALLY IMPORTANT, IT CAN
PLACE THESE INDIVIDUALS AT A
DISADVANTAGE, BECAUSE THEY'RE
CALLED UPON MORE OFTEN THAN
OTHERS, WHILE STILL HAVING TO
PRODUCE AT THE SAME RATE AS
THOSE WITHOUT THESE ADDITIONAL
PRESSURES.
THIS WORK IS OFTEN
UNACKNOWLEDGED AND NOT
ADEQUATELY REWARDED BY
INSTITUTIONS, DESPITE ITS
CRITICAL IMPORTANCE.
TO ADDRESS THIS, THE EXCELLENCE
IN DEIA INVESTIGATORS AWARD
IMPLEMENTATION TEAM IS REFINING
ITS FRAMEWORK FOR THE
DEVELOPMENT OF A FIVE-YEAR AWARD
THAT BOTH PROVIDES FUNDING TO
FURTHER ADVANCE, RECOGNIZE AND
GIVE CURRENCY TO AN
INVESTIGATOR'S RESEARCH EFFORTS
AS WELL AS THEIR EXISTING
EFFORTS TO PROMOTE MENTORING IN
DEIA WITHIN THEIR OWN
INSTITUTIONS.
SO THE CONCEPT FOR THIS GRANT
FOLLOWS A SIMILAR CONCEPT TO THE
NINDS LANDIS AWARD AND PROFESSOR
AWARD, BOTH OF WHICH RECOGNIZE
THE SYNERGY AND TENSION BETWEEN
TEACHING EXCELLENCE AND RESEARCH
ACHIEVEMENT.
AGAIN N IGMS WILL BE SERVING AS
THE IC LEAD ON THIS INITIATIVE
AND NOW THAT THE NIGMS COUNCIL
HAS APPROVED THIS CONCEPT TO
PROCEED THE IMPLEMENTATION TEAM
IS FURTHER REFINING THE CONCEPT
AS WELL AS FOCUSING ON THE
WRITING OF THE FOA.
NOW MOVING FROM INDIVIDUAL DEIA
RECOGNITION TO RECOGNIZING DEIA
ADVANCEMENTS AT THE
INSTITUTIONAL LEVEL, THE UNITE E
INSTITUTIONAL EXCELLENCE IN DEIA
IMPLEMENTATION TEAM IS READILY
ESTABLISHING A FRAMEWORK FOR AN
INSTITUTIONAL PRIZE THAT
PROVIDES RECOGNITION AND
ACKNOWLEDGMENT TO INSTITUTIONS
THAT ARE IMPLEMENTING
PARTICULARLY INNOVATIVE
PROGRAMS, INTERVENTION, ET
CETERA, THAT HAVE LED TO
ENHANCED CULTURE CHANGE
INCREASED SUCCESS, RETENTION AND
ADVANCEMENT OF BOTH STUDENTS AND
FACULTY FROM UNDERREPRESENTED
GROUPS AT THEIR INSTITUTIONS.
IN APRIL OF THIS YEAR, THE
IMPLEMENTATION TEAM LED BY THE
OFFICE OF SCIENTIFIC WORKFORCE
DIVERSITY RELEASED AN RFI
INVITING COMMENTS AND
SUGGESTIONS FROM THE EXTRAMURAL
COMMUNITY ABOUT THE PRIZE
STRUCTURE, IDENTIFYING BARRIERS
TO APPLYING, ET CETERA.
SO THIS RFI IS OPEN UNTIL
JULY 28TH, AND WE HOPE THAT YOU
HAVE SUBMITTED YOUR COMMENTS AND
CONSIDERATIONS.
SO HARASSMENT IN ANY FORM
REPRESENTS A CLEAR AND PRESENT
DANGER TO SCIENTIFIC PROGRESS.
NIH SUPPORTS SAFE AND RESPECTFUL
WORK ENVIRONMENTS THAT ARE FREE
FROM HARASSMENT, INCLUDING
SEXUAL HARASSMENT,
DISCRIMINATION AND OTHER FORMS
OF INAPPROPRIATE CONDUCT.
SO IN SUPPORT OF THIS AND TO
ENSURE IT IS EXPLICITLY EVIDENT
TO THE EXTRAMURAL COMMUNITY,
UNITE E WORKED WITH THE OFFICE
OF EXTRAMURAL RESEARCH TO UPDATE
THE NIH HARASSMENT PORTAL BE TO
INCLUDE DISCRIMINATION AND
UPDATE THE ANTIHARASSMENT
PRIVACY NOTICE AS WELL.
STILL FOCUSING ON POLICIES AND
PROCEDURES IN ALIGNMENT WITH CSR
EFFORTS TO MITIGATE BIAS DURING
REVIEW, YOU UNITE E HAS
ESTABLISHED AN IMPLEMENTATION
TEAM TO WORK IN CONCERT WITH THE
OFFICE OF EXTRAMURAL RESEARCH
STRAINING STAFF OFFICE FOR
PROGRAM OFFICER AND SCIENTIFIC
REVIEW OFFICER TRAINING MODULES
TO PROMOTE MORE INCLUSIVE AND
EQUITABLE ENGAGEMENT,
PARTICULARLY WITH INDIVIDUALS
FROM UNDERREPRESENTED GROUPS AND
FROM INSTITUTIONS THAT DON'T
HAVE A LONG HISTORY OF RECEIPT
OF RESEARCH GRANTS FROM NIH.
THESE TRAININGS WILL ADDRESS THE
RECOGNITION AND MITIGATION OF
IMPLICIT AND EXPLICIT RACIAL AND
ETHNIC BIAS, INSTITUTIONAL
REPUTATIONAL BIAS, FAVORITISM,
FAIR AND EQUITABLE ACCESS WHEN
CONSIDERING ENGAGEMENTS WITH
APPLICANTS, AND ALL OF THESE
WERE IDENTIFIED ASCII AREAS OF F
IMPROVEMENT DURING UNITE
LISTENING SESSIONS.
LASTLY I'LL PROVIDE AN UPDATE ON
IMPLEMENTATION ACTIVITIES FOCUS
OND RESEARCH CAPACITY BUILDING.
THE INSTRUMENTATION
IMPLEMENTATION TEAM HAS BEEN
WORKING ON ADDRESSING AN
IMPORTANT CONCERN IDENTIFIED
DURING LISTENING SESSION, WHICH
IS THE NEED FOR ACCESS TO AND/OR
PURCHASE OF STATE OF THE ART
EQUIPMENT WHICH ENSURES
PROGRESSION OF RESEARCH
ACTIVITIES AS WELL AS
APPROPRIATE EDUCATIONAL
ACTIVITIES FOR STUDENTS ACROSS
ALL INSTITUTIONS.
SO THE CONCEPT FOR THIS MSI S10
PROGRAM, WHICH WILL PROVIDE
BETWEEN 25,000 TO $250,000 TO
PURCHASE EQUIPMENT, AND ALSO
HOPEFULLY PROVISION OF
MAINTENANCE COSTS, WAS APPROVED
FOR CLEARANCE BY NIGMS COUNCIL.
NEXT STEPS FOR THIS GROUP OR
IMPLEMENTATION TEAM ARE TO
FURTHER REFINE THE FRAMEWORK AND
BEGIN WORKING ON THE FUNDING
OPPORTUNITY ANNOUNCEMENTS.
ANNOUNCEMENT.
NOW MOVING ON TO ACTIVITIES OF
THE INSTITUTIONAL RESEARCH
CAPACITY NEEDS ASSESSMENT
IMPLEMENTATION TEAM, SAY THAT
ONE TWICE FAST, SO THIS
IMPLEMENTATION TEAM IS CURRENTLY
REFINING A FRAMEWORK AND
DEVELOPING A FUNDING OPPORTUNITY
ANNOUNCEMENT TO SUPPORT THE
DEVELOPMENT OF A PILOT PROGRAM,
PROVIDING RESEARCH ACTIVE
MINORITY SERVING INSTITUTIONS
WITH GRANTS TO CONDUCT
STRUCTURED COMPREHENSIVE
INSTITUTIONAL ASSESSMENTS.
SO THE DEVELOPMENT OF STRUCTURED
ASSESSMENTS CAN OFFER ACTIONABLE
EVALUATION BENCHMARKS AND ACTUAL
PLANS TO ADDRESS AREAS SUCH AS
INSTITUTIONAL RESEARCH CULTURE
AND SUPPORT, SPONSOR PROGRAMS
CAPACITY, FACULTY SOURCES AND
NEEDS, ENDOWMENT, ET CETERA.
SO NIGMS WILL SERVE AS THE LEAD
OF THE INITIATIVE, RECENTLY
CLEARED WITH SOME VERY HELPFUL
PROPOSALS OR COMMENTS DURING
THEIR MAY MEETING.
SO THE IMPLEMENTATION TEAM WILL
FOCUS ON INCORPORATING
RECOMMENDATIONS AND DEVELOPING
AN FOA.
IF I PLAY, I WANT TO TAKE A
SECOND TO READ A FAIR PHRASED
COMMENT BY A COLLEAGUE WHO
REVIEWED THIS CONCEPT RECENTLY.
THEY SAID BASICALLY THIS ALLOWS
THEM TO FURTHER STRATEGIZE AND
POSITION THEMSELVES IN THE
RESEARCH ECOCYST TE. WHAT'S
EXCITING ABOUT THIS CONCEPT IS
IT REPRESENTS A MEASURED
SYSTEMATIC APPROACH TO TAPPING
THE UNTAPPED -- AS AN INDIVIDUAL
WHO SPENT THE MAJORITY OF THEIR
CAREER AT AN HBCU, THE CONCEPT
IS ENCOURAGING, LIKE THE END OF
THE GAME, SCORE TIED, MINUTE AND
A HALF TO PLAY, THE COACH LOOKS
DOWN THE BENCH AND CALLS ON THE
KID WITH THE MAD SKILL WITH T
RARELY GETS TO PLAY AND PUTS
THEM IN THE GAME.
THIS HOLDS THE PROMISE OF
PUTTING MSI INSTITUTIONS IN THE
GAME WHEN IT REALLY COUNTS.
NOW FOR OUR FINAL UPDATES
REGARDING OUR CAPACITY BUILDING
IMPLEMENTATION TEAM EFFORTS.
OUR SPONSORED PROGRAMS
ADMINISTRATION DEVELOPMENT OR
SPAD TEAM IS DEVELOPING THE
FRAMEWORK FOR THE REISSUANCE OF
THE SPAD PROGRAM FOA, BECAUSE IT
WILL EXPIRE IN THE NEXT COUPLE
OF YEARS.
THE GOAL IS TO EXPAND THE
SERVICES AND RESOURCES TO AID
INSTITUTIONS THAT ARE SEEKING TO
DEVELOP OR ENHANCE THE SERVICES
OFFERED BY THEIR OFFICES OF
SPONSOR PROGRAMS.
SO NEXT FOR THIS PARTICULAR
SUBWORKING GROUP OF UNITE
COMMITTEE E IS TO CONTINUE TO
BUILD UPON OUR LIST OF PROPOSALS
AND ESTABLISH IMPLEMENTATION
TEAMS TO BETTER AID THE
DEVELOPMENT OF ADDITIONAL
PROGRAMS THAT MEET THE
IDENTIFIED NEEDS OF HBCUs,
TCUs AND OTHER MSIs.
YOU CAN SEE HERE AT THE BOTTOM
OF THIS SLIDE HERE, THAT WE HAVE
ADDITIONAL PROPOSALS THAT WILL
BE FOCUSING ON BETTER
UNDERSTANDING THE STRENG,
CAPABILITY AND NEEDS AS WELL AS
CREATING A FRAMEWORK OF
STRUCTURES HERE WITHIN NIH TO
BETTER SUPPORT THE NEEDS AND OUR
OWN EFFORTS REGARDING MINORITY
SERVING INSTITUTIONS -- THAT'S
MY TIMER GOING OFF -- AS WELL AS
DEVELOPING -- FURTHER DEVELOPING
OUR IDEAS OR INITIATIVES TO
DEVELOP AN ENDOWMENT PROGRAM, AS
WELL AS ESTABLISHING A BIAB
YOU'LL OR SOME SORT OF REGULAR
MEETING BETWEEN NIH LEADERSHIP
AND LEADERSHIP FROM MINORITY
SERVING INSTITUTIONS.
THERE WAS MENTIONED EARLIER
ABOUT THE DISPARITY OF CONTACT
BETWEEN CERTAIN TYPES OF
INSTITUTIONS, WE WANT TO MAKE
SURE THIS IS ALLEVIATED.
I'D LIKE TO END BY ACKNOWLEDGING
MY AWESOME COMMITTEE MEMBERS FOR
COMMITTEE E.
THANK YOU FOR ADVANCING THAT
SLIDE.
AS WELL I'D LIKE TO RECOGNIZE
MEMBERS OF OUR IMPLEMENTATION
TEAMS.
THEY'VE BEEN DOING THE LION'S
SHARE OF THIS WORK.
AND I KNOW THAT THE TYPE ON THIS
SLIDE IS EXTREMELY SMALL, BUT
THE SIDES OF THE SIZE OFS
ABSOLUTELY NOT ASSOCIATED WITH
THEIR LEVEL OF EFFORT.
I WANT TO SAY THANK YOU VERY
MUCH FOR YOUR TIME AND
ATTENTION.
>> GREAT.
THANKS SO MUCH, ERICA.
SO AS YOU CAN TELL, THERE IS A
LOT GOING ON AS PART OF UNITE,
AND OF COURSE ALL THESE EFFORTS
ARE DONE WITH A WHOLE HOST OF
PEOPLE WHO ARE NOT PRESENT HERE
ON THE SCREEN RIGHT NOW AND
DIDN'T PRESENT, AND OF COURSE
MUCH OF THIS WORK IS BEING DONE
IN COORDINATION AND
COLLABORATION WITH DIFFERENT
INSTITUTES AND CENTERS AND OD
OFFICES ACROSS NIH.
WHAT YOU'VE SEEN HERE IS THE TIP
OF THE ICEBERG BECAUSE THERE'S A
LOT OF WORK GOING ON WITHIN THE
ICs AND THE OFFICE OF THE
DIRECTOR SPECIFICALLY TOO.
SO WITH THAT, WE CAN JUMP INTO
QUESTIONS, AND COMMENTS.
I NOTED A FEW THAT WE COULD GET
STARTED WITH THAT OCCURRED
PREVIOUSLY.
I DON'T KNOW, DAVID, IF YOU
WANTED TO MAKE YOUR COMMENT
ABOUT BARRIERS?
>> I'LL MAKE IT BRIEFLY BECAUSE
IT WAS MORE AN OBSERVATION THAN
A QUESTION, BUT THE BARRIERS
THAT WERE CITED TO THOSE
PARTICIPATING IN THE NIH FUNDING
PROCESS OVERLAP A LOT WITH THE
GENERAL BARRIERS THAT WOULD
ADDRESS THE LONG TAIL OF
INSTITUTIONS THAT LARRY TALKED
ABOUT YESTERDAY SO THERE ARE --
INCLUDING THE MSIs THAT ARE
DISPROPORTIONATELY REPRESENTED
IN THE LONG TAIL.
>> GREAT.
AND OF COURSE I SHOULD MENTION
THAT THE UNITE COMMITTEE
CO-CHAIRS SHOULD FEEL FREE TO
JUMP IN AND RESPOND AND REACT AS
APPROPRIATE AND NECESSARY.
WENDY, YOU HAD SOME COMMENTS AND
I KNOW WERE YOU GOING BACK AND
FORTH A LITTLE BIT WITH SEDONA
JACKSON WHO'S ON FROM OUR T
COMMITTEE.
I DIDN'T KNOW IF YOU WANTED TO
TALK A LITTLE BIT ABOUT WHAT YOU
WERE MENTIONING.
>> IT WAS RESONATING WITH WHAT
DAVID SAID ABOUT THE LONG
TAILMENT I'M FROM THE WESTERN
U.S., AND I WAS THINKING, THERE
ARE SO MANY DIFFERENT SOLUTIONS
THAT COULD BE TAKEN, IN A
SITUATION OF, SAY, I'M FROM A
STATE INSTITUTION AND THEN YOU
SEE A LOT OF THE HIGHER RATED
INSTITUTIONS GETTING A LOT OF
THE FUNDING, YOU COULD TAKE A
SOLUTION TO SAY LET'S MAKE SURE
THAT WE GIVE THE WESTERN STATES
AS MANY GRANTS AS WE GIVE THE
OTHER INSTITUTIONS AND THAT
WOULD HAVE A LOT OF UNINTENDED
CONSEQUENCES AND BACKLASH AND SO
I WAS INTERESTED IN HOW WE MAKE
SURE THE SOLUTIONS WE TAKE
REALLY ADDRESS THE STRUCTURAL
PROBLEMS AND AREN'T CHECKING THE
BOX AND I THINK THE
PRESENTATIONS REALLY SHOWED HOW
THE LISTENING AND THE GRASSROOTS
PARTNERSHIPS THAT ARE BEING
DEVELOPED, AND THE SOLUTIONS
REALLY ARE ADDRESSING THOSE
STRUCTURAL PROBLEMS AND NOT THE
CHECKING THE BOX KIND OF
SOLUTIONS THAT COULD BE TAKEN
AND HAVE BEEN TAKEN IN THE PAST.
SO I APPLAUD IT AND THINK IT'S
REALLY FAN TASTE TICK.
FANTASTIC.
>> THANK YOU SO MUCH.
THERE ARE -- WE'RE TRYING TO GO
THROUGH THE CHAT HERE A LITTLE
BIT.
OF COURSE WANT TO BE MINDFUL TO
MAKE SURE WE LEAVE SOME TIME AT
THE END TO HEAR ABOUT THE
EVALUATION EFFORT THAT WILL E
UNDERTAKING.
I SEE YOU PUT A FEW COMMENTS IN
THE CHAT.
DID YOU WANT TO MAKE ANY POINTS
OR RAISE ANY QUESTIONS?
>> GREAT.
THANKS.
SO FIRST OF ALL, JUST
CONGRATULATING THE PRESENTERS,
GREAT PRESENTATIONS.
VERY QUICKLY, THROUGH COMMITTEE
BY COMMITTEE, THE U COMMITTEE,
THOSE QUOTES WERE GREAT.
I THINK THE ONE QUOTE REALLY
TAKES A THOUSAND PIECES OF DATA
AND DISTILLS IT IN A VERY MOVING
WAY.
THE LIST OF PROPOSED SOLUTIONS
WAS INCREDIBLE.
BUT I HAVE SOME SKEPTICISM ON A
FEW OF THEM.
THE REPORT CARD WAS AN AMAZING
IDEA.
JUST CURIOUS WHO WOULD BE
ASSIGNING THOSE GRADES ON AN
INSTITUTION INVENT ADVISED TO
GET THESE GRANTS, BUT SEEMS LIKE
GREAT IDEA.
MONITORING INPUTS AND HOLDING
THEM ACCOUNTABLE, I'VE OFTEN --
HOLD FOLKS ACCOUNTABLE, DATA
SHARING, RESOURCE SHARING, IT
SEEMS THAT WOULD BE CHALLENGING.
BUT ONE THING THAT SEEMED TO
COME -- THAT WAS MISSING IN THE
U COMMITTEES REPORT BUT WAS
MENTIONED BY E COMMITTEE ARE
DIVERSITY SUPPLEMENTS.
ARE THESE FELT TO BE WORKING AT
NIH, SHOULD WE BE EXPANDING
THEM?
OUR INSTITUTION HAS SPECIFIC
RESOURCES TO HELP US SUBMIT
DIVERSITY SUPPLEMENTS.
DO OTHERS DO THIS?
AREN'T THESE SUPPOSED TO BE A
GREAT WAY TO EXPAND CAREER
OPPORTUNITIES AND SHOULD NIH
FUND EFFORTS TO GET MORE
DIVERSITY SUPPLEMENTS INBOUND?
SO THAT'S ALL FOR THE U
COMMITTEE.
MAYBE I'LL STOP THERE FOR A
SECOND AND JUST QUICKLY TALK
ABOUT THE REST.
>> MONICA, DID YOU WANT TO
RESPOND?
>> YES, I APPRECIATE ALL THOSE
COMMENTS.
I OCCUR THOSE OFFERED BY THE
ATTENDEES WERE QUITE INTERESTING
AND I THINK WHAT WOULD NEED TO
HAPPEN IS THOSE WOULD NEED TO BE
BETTER FLESHED OUT TO EXAMINE
HOW THESE VARIOUS SOLUTIONS
COULD POSSIBLY COME TO BEAR.
I THINK THE UNDERLYING THOUGHT
AROUND THAT KIND OF SUGGESTION
ABOUT THE REPORT CARDS ON EDI
WAS REALLY ON THE AREA OF
ACCOUNTABILITY.
MANY OF OUR PARTICIPANTS IN THE
SESSIONS JUST FELT LIKE
INSTITUTIONS ARE NOT BEING HELD
ACCOUNTABLE FOR THE THINGS THAT
THEY SAID THEY WOULD DO IN THESE
SPACES, AND THE EFFORTS AND
ACTIVITIES THEY SAID THEY WOULD
COMPLETE.
AND THEY'RE LOOKING FOR WAYS TO
HOLD INDIVIDUAL PIs AND
INSTITUTIONS ACCOUNTABLE FOR
EFFORTS IN THE SPACE OF DEI.
AND THEN I THINK THE DIVERSITY
SUPPLEMENTS, THAT DID COME UP,
IT DIDN'T EMERGE AT THE LEVEL OF
A THEME ACROSS THE GROUPS, BUT
IT DID COME UP AND I THINK IN
THE SPACE OF MENTORSHIP WHERE
PEOPLE TALKED ABOUT
OPPORTUNITIES FOR MENTORSHIP,
OPPORTUNITIES TORE BE TO BEN
RESEARCH AT THE EARLIER CAREER
STAGE, SO I THINK WHAT PEOPLE
WERE TALKING ABOUT ARE THOSE
OPPORTUNITIES.
AND WE DID HAVE THOSE FOLKS ON
THESE SESSIONS WHO TALKED ABOUT
THE POSITIVE EXPERIENCES THEY
HAD WITH MECHANISMS SUCH AS
DIVERSITY SUPPLEMENTS OR HOW
THEY'D UTILIZE THEM IN THEIR OWN
LAB.
SO IT DID COME UP, IT JUST
DIDN'T EMERGE AS A PRIMARY THEME
IN THE OVERVIEW I PROVIDED.
>> THAT'S GREAT.
IT WOULD BE, AGAIN, BEYOND YOUR
COMMITTEE, IT WOULD BE GREAT TO
SEE DATA SHOWING THESE ARE
WORKING AND IF WE GET THAT DATA,
WE SHOULD REALLY THINK ABOUT
EXTENDING IT, BECAUSE I THINK
IT'S SOMETHING THAT AT LEAST ON
MY CAMPUS IS BEING PORTRAYED AS
SO EASY TO EXECUTE ON, IT'S
AMAZING MORE PEOPLE DON'T
EXECUTE ON THOSE DIVERSITY
SUPPLEMENTS.
THAT'S A GREAT ANSWER.
LET ME QUICKLY GO TO THE REST OF
THESE.
SO FOR THE N COMMITTEE, I'M A
COMPUTER GUY, I LOVE AUTOMATED
METHODOLOGIES TO IDENTIFY THE
RESEARCH PORTFOLIO, ESPECIALLY
COVERING HV, MH AND HE, BUT WHAT
ABOUT THE FUNDED PROJECTS?
I WANT TO SEE THEM AND THEIR
PROGRESS ON HEALTH EQUITY, NOT
JUST HOW MANY GRANTS NIH IS
FUNDING.
I LIKE THE GRANTS FUNDED AND I
SEE THAT ON THE DASHBOARD
WEBSITE, BUT IT WOULD BE GREAT
TO TALK ABOUT THOSE FUNDED TEAMS
AND HOW MUCH SUCCESS OR NOT
THEY'RE HAVING.
SO RENEWALS MAKES IT A LITTLE
EASIER.
ANY THOUGHTS ON GETTING THE
ACTUAL NUMBERS AND PROGRESS FROM
THE FUNDED TEAMS, NOT JUST HOW
MANY GRANTS NIH IS FUNDING?
>> ARE YOU TALKING ABOUT IMPACT
OF THOSE GRANTS?
>> EXACTLY.
A LITTLE BIT MORE NUMERICAL
IMPACT.
>> I DON'T KNOW IF YOU HEARD,
BUT I KEPT SAYING THAT TOO
THROUGHOUT THE PAREN TAIG,
BECAUSE I ALSO FEEL -- AND I
THINK THE COMMITTEE FEELS
THERE'S A LOT OF POWER IN TRYING
TO ASSESS THE IMPACT, AND ARE WE
FUNDING THE RIGHT SCIENCE TO
REALLY MOVE THE NEEDLE ON
DISPAIRKTS RIGHT?
AND WE COMPLETELY AGREE AND
THAT'S DEFINITELY ON OUR AGENDA
AS PART OF THAT PRIORITY OF
SUSTAINABILITY AT
ACCOUNTABILITY, BECAUSE I MEAN,
WE COULD BE FUNDING AND SEEING
THOSE INCREASES IN FUNDING THE
DOLLARS BUT THEY HAVE TO GO HAND
IN HAND.
SO AS WE BUILT OUT THIS
PORTFOLIO TRACKING MECHANISM,
WE'RE TRYING TO LOOK AT IT FROM
EVEN GRANTS SUBMISSIONS THAT ARE
UNFUNDED ALL THE WAY THROUGH
COMPLETION OF PROJECTS.
PART OF THAT IS ALSO WE DIDN'T
REALLY HAVE TIME TO TALK ABOUT
IT, BUT TRYING TO ADDRESS THE
ISSUE OF REPRESENTATION AND
EQUITY IN REPRESENTATION ACROSS
POPULATION SEGMENTS THAT HAVE
CYST POREICALLY
HISTORICALLY BEEN UNREPRESENTED
SO WE TAKE TO HEART.
>> FOR THE I COMMITTEE,
MENTIONED ABOUT THE DIRECTORS'
AWARDS AND RECOGNITION THERE,
IMPROVING THE THE DIVERSITY T.
ONE THING THAT DID NOT COME UP
IS COMPOSITION OF THE SEARCH AND
WORD COMMITTEES THEMSELVES.
IS THAT FELT TO BE OKAY AT NIH
OR ARE THERE MINIMUM NUMBERS OF
MEMBERS THAT SHOULD BE SPONSORED
COMMITTEES AND AWARD COMMITTEES
FROM UNDERREPRESENTED GROUPS?
I KNOW WE HAVE SUCH THRESHOLDS
AT UCSF, I'M CURIOUS DOES NIH
HAVE THOSE INTRAMURALLY OR OR
INTERNALLY?
>> INTERNALLY WHEN IT COMES TO
STAFF AWARDS, SEARCH COMMITTEES,
ET CETERA, WE ARE STRONGLY
ENCOURAGING AND CAREFULLY
MONITORING THAT THERE ARE
DIVERSE PERSPECTIVES
REPRESENTED.
WE DON'T HAVE QUOTAS OR ANYTHING
OF THAT SORT, BUT WE ARE VERY
SENSITIVE TO THOSE ISSUES, AND
IN FACT AS WE HAVE A NUMBER OF
SEARCHES FOR SCIENTIFIC
DIRECTORS ONGOING, THERE HAPPEN
A REAL MOVEMENT AFOOT TO BE VERY
OPEN AND TRANSPARENT ABOUT WHO'S
ON THE COMMITTEES, AND WHAT ARE
THE CRITERIA, ET CETERA, ET
CETERA.
>> THAT'S GREAT.
I NEVER WANT TO USE THAT WORD
QUOTA, BUT AT LEAST SEEING SOME
THRESHOLDS OR SOMETHING WOULD BE
USEFUL THERE AND OBVIOUSLY MAKE
A DIFFERENCE.
WE -- INVALID UNLESS THEY MEET
THOSE CRITERIA.
QUICKLY, THE T COMMITTEE FOR
TRANSPARENCY, I LOVE IT BECAUSE
OF COURSE I LOVE DATA, I LOVE
THE DASHBOARDS, AND THEY'RE
GREAT, BUT THEY'RE ALSO NOT
SHOWING THE LEADERSHIP NUMBERS.
AND I ACKNOWLEDGE THAT THE
PORTRAITS OF THOSE SENIOR MOST
LEADERS ARE SHOWN ON WALLS BUT
WHY NOT CALL OUT THE PERCENTAGES
IN THE LEADERS OF NIH AND
BROADLY DEFINED, NOT JUST
INSTITUTE DIRECTORS, JUST A
THOUGHT THERE.
ANOTHER QUESTION ON WORKFORCE
DEMOGRAPHICS.
AGAIN I SEE THE PIE CHARTS BUT I
DON'T SEE THEM OVER TIME, RIGHT?
I THINK THE POINT IS TO SEE
THESE QUARTERLY, I THINK THE
DATA IS UPDATED QUARTERLY, ARE
WE MAKING QUARTER BY QUARTER
IMPROVEMENTS HERE INSTEAD OF
JUST A STATIC PICTURE WHICH IT
SEEMS TO BE RIGHT NOW.
SO ANY THOUGHTS FROM THE C T
COMMITTEE ON THAT?
>> I INVITE MY CO-CHAIRS AND
OTHERS TO RESPOND.
IN TERMS OF THE LEADERSHIP
QUESTION, I THINK THAT'S A
REALLY IMPORTANT ONE.
ONE OF THE THINGS THAT WE
BALANCE IS PRIVACY WITH THIS
DATA, AND ONCE THE NUMBERS GET
SMALL, IT GETS VERY, VERY
DIFFICULT FRANKLY TO SHARE THAT
DATA, WHICH IS PERHAPS THE MOST
SYMBOLIC THING I CAN SAY IN
TERMS OF OF ONE OF THE REASONT
IS CHALLENGING TO SHARE THAT
DATA.
BUT NONETHELESS, IT IS A GOOD
POINT AND WE SHOULD LOOK BACK IF
THERE IS SOME WAY THAT WE CAN
REPRESENT THAT DATA MORE FULLY
BECAUSE THAT QUESTION COMES UP
QUITE A BIT AND FRANKLY WHAT
PEOPLE HAVE TO RESORT TO IS DATA
COLLECTION BY VISUAL INSPECTION
WHICH WE ALL AGREE IS NOT --
>> EXACTLY.
>> JUST TO YOUR OTHER POINT SORT
OF MORE GENERALLY, I TOTALLY
AGREE WITH YOU THAT TREND DATA
IS VAL AUTOMOBILE VALUAF
THESE DATASETS CAN BE IMPROVED,
AND EVERYBODY IS VERY DEDICATED
TO THAT.
IT'S VERY EXPENSIVE NOT JUST TO
COLLECT THE DATA BUT TO
VISUALIZE IT IN AN INTERACTIVE
AND COMPELLING WAY, AND IT IS A
GOAL, BUT IT IS DEFINITELY
SOMETHING WE'RE WORKING TOWARDS.
BUT THAT POINT ABOUT THE TRENDS
IS ONE WE WILL DEFINITELY TAKE
BACK AND SEE WHAT WE CAN DO, SO
THANK YOU.
>> I AGREE A SMALL NUMBER
PROBLEM IS THERE, BUT THERE'S
PRINCIPAL INVESTIGATORS, LAB
CHIEFS, DEPUTIES, IT BECOMES A
LARGER NUMBER, BUT I'VE ALSO
HEARD FOR DECADES IT'S BEEN A
PROBLEM, FOR EXAMPLE, IN THE
PROMOTION, TENURE, WHATEVER IT'S
CALLED AT NIH, THOSE NUMBERS
MEAN A LOT OF PEOPLE.
>> ABSOLUTELY, THAT'S A GOOD
POINT.
I WILL SAY THE INTRAMURAL
PROGRAM DOES AN EXCELLENT JOB
SHARING THAT INFORMATION ACROSS
THE INTRAMURAL SPACE ITSELF, SO
I THINK WE HAVE NOT BEEN
INCLUDING PIs AS OUR SORT OF
LEADERSHIP DEFINITION SO OUR
POOL WAS PRETTY SMALL.
BUT WE CAN -- THAT'S THE KIND OF
EXAMPLE THAT WE CAN THINK ABOUT
MORE CREATIVELY TO SEE HOW WE
CAN REFLECT THAT INFORMATION.
SO THANK YOU.
>> THAT'S GREAT.
MY QUESTION FOR THE E COMMITTEE
WAS ANSWERED I'M FINALLY
CONNECTING THE DOTS.
>> LET'S GO TO JUDITH, THEN I
WANT TO MAKE SURE WE GET BACK TO
AMY TO TALK ABOUT THE
EVALUATION.
>> THANKS.
I HAVE ONE VERY SMALL COMMENT.
WHEN WE WERE TALKING AT THE U
COMMITTEE WAS TALKING ABOUT
BARRIERS, THERE WAS ONE BARRIER
THAT CAME TO THE FORE IN THE
WORK I WAS DOING THAT WASN'T
EVEN MENTIONED.
I'M SURE YOU'RE TOTALLY AWARE OF
THIS, AND THAT IS THE BARRIER OF
THE UNDERREPRESENTED COMING IN
AND HAVING A STIPEND BUT HAVING
NO FINANCIAL SUPPORT FROM THEIR
FAMILIES AND, IN FACT, ACTUALLY
ARE OFTENTIMES BEING REQUIRED TO
GIVE FINANCIAL SUPPORT TO THEIR
FAMILIES BECAUSE NOW ALL OF A
SUDDEN THEY'RE GETTING A
STIPEND.
SO THE FINANCIAL BURDEN IS
REALLY QUITE AMAZING, I THINK,
FOR THESE UNDERREPRESENT THE
STUDENTS FROM DIVERSE
BACKGROUNDS, USUALLY
IMPOVERISHED BACKGROUNDS, AND
THE FAMILY OBLIGATIONS REALLY DO
MAKE A HUGE DIFFERENCE.
I'M WONDERING IF THIS IS
SOMETHING THAT YOU THINK ABOUT.
OBVIOUSLY YOU'RE DOING DIVERSITY
SUPPLEMENTS, BULL I WAS
SURPRISED THIS BARRIER WASN'T
MENTIONED.
THANK YOU.
>> MONICA, DO YOU MIND IF I STEP
IN?
>> PLEASE.
>> SO PRIOR TO MY POSITION, AND
I THINK THAT I'VE RESPONDED TO
YOUR QUESTION ABOUT THIS ONE,
DR. KIMBALL, IN A PREVIOUS ACD
MEETING, ABOUT THE POWER OF THE
NIH LOAN REPAYMENT PROGRAM.
SO OF COURSE THIS PROGRAM IS
INSTRUMENTAL IN HELPING TO
ALLEVIATE SOME OF THE STRESS AND
THE STRAIN OF THE ACQUISITION OF
EDUCATIONAL DEBT ACROSS
EDUCATION AND CAREER DEVELOPMENT
OF OUR EARLY CAREER
INVESTIGATORS.
SO YOU'RE QUITE RIGHT THAT MANY
INDIVIDUALS EARLY ON IN THEIR
CAREER ARE REALLY STRUGGLING
WITH THIS.
AND WE ALL KNOW THAT INDIVIDUALS
MAKE PROFESSIONAL DECISIONS
BASED ON ECONOMICS.
THIS IS WHERE THIS NIH PROGRAM
COMES INTO PLAY, AND IT MAKES A
REAL POWERFUL DIFFERENCE IN THE
ABILITY OF EARLY CAREER
INVESTIGATORS TO BE ABLE TO NOT
ONLY BEGIN BUT ALSO TO SUSTAIN
THEIR RESEARCH CAREERS, SO WE
HEAR A LOT ABOUT THIS.
WE HEAR A LOT ABOUT THE
FINANCIAL STRUGGLES AND STRAINS
OF A PERSON WHO'S A TESTAMENT TO
THAT, AND PROBABLY MANY OF US
HERE ON THIS CALL TODAY, WE'VE
DEALT WITH THAT.
BUT WE HAVE A PROGRAM HERE
THAT'S VERY STRONG, THAT HELPS
MEET THAT PARTICULAR BURDEN.
>> I WAS JUST SURPRISED IT
WASN'T LISTED AM THE BARRIERS.
THANK YOU.
>> GREAT.
WE'RE GOING TO TURN NOW TO AMY
TO GIVE AN OVERVIEW OF THE WAY
WE'RE THINKING ABOUT EVALUATING
ALL OF THESE EFFORTS.
>> HELLO AGAIN.
THANK YOU FOR HAVING ME BACK.
I'M DELIGHTED TO SHARE WITH YOU
TODAY THE PLANS WE'RE PUTTING IN
PLACE TO ENSURE THAT WE'RE ABLE
TO ASSESS UNITE'S PROGRESS AND
EVALUATE ITS SUCCESS IN MEETING
ITS STATED GOALS.
SO NIH HAS ESTABLISHED A NEW
WORKING GROUP OF VOLUNTEERS
DRAWN FROM ACROSS NIH TO CONDUCT
AN EVALUABILITY ASSESSMENT,
MEANT TO BE A SHORT-TERM TASK
FORCE.
SO IT'S A SYSTEMATIC ASSESSMENT
TO DETERMINE WHETHER CONDUCTING
AN EVALUATION IS APPROPRIATE,
AND THEN TO DESIGN WHAT THAT
EVALUATION MIGHT LOOK LIKE AND
SORT OF ASCERTAIN WHAT THE COSTS
MAY BE.
SO WHY ARE WE DOING THIS NOW,
ESPECIALLY AS EVERYTHING IS VERY
EARLY IN IMPLEMENTATION?
YOU KNOW, I WANT TO SAY THAT WE
ARE, AS AN AGENCY, REALLY COMMIT
TODAY EVALUATING UNITE AS PART
OF OUR OVERALL COMMITMENT TO
TRANSPARENCY AND ACCOUNTABILITY
FOR UNITE.
THOSE WORDS MIGHT SOUND A LITTLE
BIT FAMILIAR BECAUSE THAT'S PART
OF THE T COMMITTEE'S CHARGE,
WHICH IS WHY I'M INVOLVED IN
THIS PART OF THE EFFORT.
YOU HEARD EARLIER TODAY ABOUT
THE FOUR OVERARCHING GOALS FOR
UNITE.
AND PART OF OUR JOB WILL BE TO
CLARIFY THE CONNECTION BETWEEN
THOSE GOALS AND THE ACTIVITIES
OF THE DIFFERENT UNITE
COMMITTEES.
A CRITICAL PART OF THIS WILL BE
IDENTIFYING THE DATA THAT CAN
MEASURE PROGRESS AND INFORM
PROGRAM IMPLEMENTATION AND
ASSESS RESULTS.
AS WE HAVE STATED HERE TODAY, WE
CAN AND WE MUST DO BETTER IN OUR
EFFORTS TO COMBAT STRUCTURAL
RACISM ACROSS THE BIOMEDICAL
RESEARCH ENTERPRISE, AND
ENSURING THAT WE CAN EVALUATE
UNITE AND ASSESS ITS PROGRESS IN
AN ONGOING WAY WILL HELP US
SYSTEMATICALLY AND TRANSPARENTLY
IDENTIFY OPPORTUNITIES FOR
ONGOING IMPROVEMENT.
SO I JUST WANT TO TAKE A MOMENT
AND AFFIRM THAT AN OUTCOME OF
THIS EVALUABILITY ASSESSMENT
ISN'T GOING TO BE NO, WE CAN'T
EVALUATE IT BECAUSE IT'S HARD SO
WE WON'T.
IT'S GOING TO BE MORE WHAT MAKES
IT CHALLENGING TO EVALUATE THIS
WORK AND HOW CAN WE FIND WAYS TO
APPROACH THAT, AND THOSE ARE
THINGS -- THE EARLIER WE CAN
HAVE THOSE CONVERSATIONS AND
FIND THOSE PATHS FORWARD.
SO OUR OVERALL APPROACH IS
CAPTURED HERE, AND I'M JUST
GOING TO VERY QUICKLY GO THROUGH
THE FACT THAT THE KEY NEXT STEPS
INCLUDE DEVELOPING FOCUSED
RESEARCH QUESTIONS, ENSURING
THAT THE GOALS AND PROPOSED
INTERVENTIONS HAVE MEASURABLE
OUTCOMES.
ONE OF MY COLLEAGUES LIKES TO
SAY THAT IN MANY ASPECTS OF OUR
WORK, WE CAN DO ANYTHING, WE CAN
EVALUATE ANYTHING BUT WE
PROBABLY CAN'T EVALUATE
EVERYTHING.
AND SO IT'S IMPORTANT TO PICK
OUT WHAT ARE THE IMPORTANT KEY
INDICATORS, AND MAKE SURE WE ARE
TRACKING AND EVALUATING THEM.
ULTIMATELY, WE WILL OFFER
RECOMMENDATIONS ON HOW THE
PROGRAM CAN BE STRUCTURED TO
ENSURE THAT IT CAN BE EVALUATED,
AND THAT THE EVALUATION HAS
ACCESS TO THE RESOURCES REQUIRED
TO EFFECTIVELY CARRY OUT A
SUCCESSFUL EVALUATION.
OUR GROUP HAS ALREADY BEGUN OUR
REGULAR MEETINGS, AND WE ARE
BEGINNING TO DIG INTO SORT OF
SPECIFIC QUESTIONS IN THAT
SPACE.
FOR EXAMPLE, HOW DO WE IDENTIFY
THE KEY EVALUATION QUESTIONS,
HOW CAN WE REALLY GET FOCUSED,
WHAT IS OUR TIME HORIZON.
MANY OF THE IMPLEMENTATIONS
YOU'VE HEARD ABOUT HERE TODAY
ARE GOING TO TAKE A LONG TIME TO
REALLY COME TO FRUITION BUT HOW
CAN WE TRACK THEIR PROGRESS OVER
TIME.
BECAUSE IT CAN'T BE OKAY TO JUST
SAY, WELL, IT GOING TO TAKE A
WHILE, SO WE CAN'T BE CHECKING
IN ON THEM.
WHAT ARE THE RESOURCES REQUIRED
TO ANSWER THESE, AND WHAT KIND
OF METHODS CAN BE USED AND WHAT
ARE THE LIMITATIONS.
THIS, AS YOU CAN MANL, IMAGIS
WHERE WE HAVE BEEN INVESTING A
LOT OF OUR ENERGY, ALSO THINKING
ABOUT HOW TO LEVERAGE DIFFERENT
DATASETS IN THIS SPACE.
WE WANT TO MAKE SURE THAT THERE
ARE CLEAR, LOGICAL LINKS BETWEEN
THE GOALS AND THE OUTCOMES.
WE WANT TO THINK THROUGH WHETHER
THE INTERVENTIONS ARE STRONG
ENOUGH TO BRING ABOUT CHANGE.
THIS IS GOING TO BE A REALLY
TRICKY ONE, BUT THINKING ABOUT
SAMPLE SIZE AND POWER
CONSIDERATIONS COMES INTO PLAY
HERE.
WE NEED TO THINK ABOUT WHETHER
WE WANT A PROCESS OR ONLY AN
OUTCOME EVALUATION.
WE WANT TO THINK REALLY
CAREFULLY AS EARLY AS POSSIBLE
ABOUT THE DATA WE NEED TO
COLLECT.
AND ALSO TO CLARIFY WHO THE
AUDIENCE IS FOR THE EVALUATION
AND HOW THOSE FINDINGS WILL BE
SHARED.
FINALLY, WHAT ARE THE BARRIERS
TO A SUCCESSFUL EVALUATION AND
HOW DO WE ADDRESS THEM?
AGAIN, OUR GOAL IS TO ARTICULATE
A CLEAR PATH FOR CONDUCTING AN
EVALUATION AND ENSURING THAT WE
CAN CONDUCT THE EVALUATION IN A
WAY THAT IT HELPS NIH MORE
EFFECTIVELY ACHIEVE THE GOALS OF
UNITE.
I'M JUST GOING TO CLOSE BY
THANKING THE WORKING GROUP
VOLUNTEERS WHO HAVE STEPPED UP
TO CONTRIBUTE TO THIS EFFORT.
MANY OF THESE PEOPLE ARE ALREADY
INVOLVED IN UNITE ACTIVITIES IN
DIFFERENT WAYS.
I WOULD LIKE TO ESPECIALLY THANK
AND ACKNOWLEDGE MY CO-CHAIRS,
THE TRUE EVALUATION EXPERTS IN
THIS LEADERSHIP GROUP.
SO WITH THAT, I'M HAPPY TO TAKE
ANY QUESTIONS.
>> THANKS, AMY.
ANY QUESTIONS FROM THE COMMITTEE
ON THE EVALUATION OR IN
FOLLOW-UP TO THE PREVIOUS
DISCUSSION THAT WE HAD?
THIS IS CRITICAL TO DO SO AGAIN,
AS I THINK AMY MENTIONED, WE CAN
SHOW THAT WE ARE PROGRESSING AND
THAT WE'RE PROGRESSING IN THE
WAY THAT WE WANT TO PROGRESS.
>>GA TO THE
ENTIRE UNITE TEAM, AS THE ACD
REPRESENTATIVE, ALWAYS
IMPRESSIVE AND I CAN TELL THE
REST OF THE ADVISORS COMMITTEE
THAT YOU'VE ONLY SEEN THE TIP OF
THE ICEBERG OF THE WORK THAT HAS
BEEN DONE.
WITH REGARD TO EVALUATION, I
THINK I'M GOING TO CHANNEL A
TOOL HERE A LITTLE BIT AROUND
DATA ACQUISITION.
AND OBVIOUSLY NUMERIC DATA IS
RELATIVELY EASY TO COLLECT.
IT'S THAT EXPERIENTIAL DATA THAT
I THINK IS SO CRITICAL.
AND WHETHER -- TO COME BACK TO A
POINT THAT ATUL RAISED IS THIS
TOOL THAT YOU ARE ALL BUILDING
SO BRILLIANTLY, AND HOW DO WE
MEASURE THAT CULTURE SHIFT THAT
IS NOT NUMERIC, BUT THAT
EVERYBODY EXPERIENCES, IT'S ALL
VERY REAL, IT'S JUST NOT
NUMERIC.
IT IS QUANTIFIABLE, THOUGH.
>> IT IS QUANTIFIABLE.
I THINK THAT THAT'S RIGHT.
BUT IT WILL REQUIRE DEVELOPING
PROBABLY NEW TOOLS TO CAPTURE
THAT AND TO CAPTURE A BASELINE.
WE CAN PULL FROM SOME EXISTING
DATA SOURCES.
ANYWAY, SO THAT IS A TERRIFIC
QUESTION BECAUSE IT GETS AT THE
HEART OF WHAT MAKES THIS SO
CHALLENGING.
SO WE HAVE TO IDENTIFY WHAT
EXISTING DATA IS OUT THERE THAT
COULD SPEAK TO SORT OF OUR
CURRENT CULTURAL CLIMATE AND
THINK THROUGH, NUMBER ONE, WHAT
ARE THE BEST INDICATORS TO
FOLLOW OR TO CREATE TO SORT OF
SEE HOW THE CULTURE IS EVOLVING,
AND HOW DO WE DEFINE WHAT
SUCCESS LOOKS LIKE, RIGHT?
BECAUSE AGAIN, THAT DEPENDS A
LOT ON BOTH WHAT WE'RE DOING AND
WHAT INTERVENTIONS WE'RE PUTTING
IN PLACE TOO.
AGAIN, WE CAN'T EVALUATE ALL THE
THINGS.
WE HAVE TO SOMEHOW TRACK -- TIE
TO HOW WE'RE TRYING TO CHANGE
THE CULTURE.
ANYWAY, IT IS TRICKY.
AND WE WELCOME ADDITIONAL SORT
OF CONVERSATIONS ALONG THIS VEIN
TO HELP US CLARIFY THESE THINGS.
>> SO IS THERE -- ARE THERE
LESSONS, EXPERIENTIAL LESSONS
LEARNED FROM THE EFFORTS THAT --
THE SUCCESSFUL EFFORTS THAT HAVE
BEEN SCAWTED AROUND -- T
THROWING SOMETHING OUT THERE,
THAT, AGAIN, IT'S -- YEAH,
THERE'S NUMERIC DATA, BUT
THERE'S ALSO EXPERIENTIAL DATA.
SO, SORRY.
>> NO, NO, I THINK THAT'S A
GREAT POINT.
AND ALSO TO ADDRESS ONE OF THE
QUESTIONS IN THE CHAT, THERE WAS
A VERY COMPREHENSIVE INTERNAL
SURVEY DONE AROUND THE SEXUAL
HARASSMENT QUESTION AND SORT OF
WORKPLACE EXPERIENCES AND
CIVILITY A COUPLE YEARS AGO THAT
DOES PROVIDE SOME HELPFUL
BASELINE FRAMEWORK THAT WE COULD
BEGIN TO THINK ABOUT, AND THERE
IS A PLAN TO LEVERAGE THAT SORT
OF REGULARLY, TO TRACK THOSE
PIECES.
THAT'S INTERNAL NIH, ONE OF OUR
VERY IMPORTANT INTERNAL
STAKEHOLDER GROUPS, OF COURSE
ISN'T THE ONLY ONE.
SO THINKING ABOUT HOW TO GET TO
ALL OF THIS IS DAUNTING, BUT
CRITICALLY IMPORTANT.
>> GREAT.
WE'RE ACTUALLY AT TIME, BUT I
THOUGHT I SAW A HAND UP EARLIER.
>> THIS IS WAFAA.
I THINK ROBERTA TALKED ABOUT
ISSUES I WAS GOING TO TALK ABOUT
SPECIFICALLY, SO THANK YOU.
>> AND JUST TO ADD TO AMY'S
POINT ABOUT THE SURVEY, THAT IS
SOMETHING THAT -- THE HARASSMENT
SURVEY IS SOMETHING WE'LL DO ON
A REGULAR BASIS EVERY FEW YEARS,
AND ALSO WE HAVE A BROADER
GOVERNMENT-WIDE FEDERAL EMPLOYEE
VIEWPOINT SURVEY WHICH ALSO
PROVIDES SOME INSIGHT THERE AS
WELL.
BUT AS AMY INDICATED, THAT IS
JUST GETTING AT ONE OF SORT OF
THE STAKEHOLDER GROUPS OR OUR
INTERNAL WORKFORCE.
LARRY, I'M GOING TO TURN IT BACK
TO YOU, BECAUSE I THINK WE'RE AT
BREAK TIME.
>> THANKS, TARA.
AND THANKS TO ALL THE
PRESENTERS.
VERY DIFFICULT JOB TO CAPTURE
THE BREADTH OF THE ACTIVITIES.
I SHOULD UNDERSCORE A POINT MADE
BY TARA.
WE'RE SHARING WITH YOU THIS
MEETING SORT OF A UNITE CENTRIC
VIEW OF WHAT IS GOING ON IN THIS
SPACE.
BUT THE INSTITUTES AND CENTERS
EACH HAVE THEIR OWN EFFORTS
WHICH WE HOPE SYNERGIZE WITH
WHAT WE ARE DOING, THAT'S
CERTAINLY THE GOAL THROUGH THE
UNITE EFFORT.
BUT I THINK CERTAINLY AT THE
NEXT ACD MEETING, IT WOULD BE
APPROPRIATE TO GIVE YOU A
SNAPSHOT OF WHAT SOME OF THE
INDIVIDUAL INSTITUTE AND CENTERS
ACTIVITIES ARE.
YOU HEARD A LITTLE BIT ABOUT
NIGMS, YOU'VE HEARD A LITTLE BIT
ABOUT NIMHD, YOU'VE HEARD A
LITTLE BIT ABOUT SOME OF THE
BRAIN INITIATIVE EFFORT.
THERE IS THAT AND MUCH MORE.
SO I THINK WE SHOULD PUT AS A
PLACEHOLDER FOR THE NEXT SESSION
IN DECEMBER AN OVERVIEW OF THOSE
EFFORTS AS WELL SO THAT YOU GET
A MORE COMPLETE VIEW OF
EVERYTHING THAT'S GOING ON.
AND THEN FINALLY, AMY, THANK YOU
FOR TALKING ABOUT EVALUATION,
WHICH SCARES PEOPLE BUT OF
COURSE EVERYBODY UNDERSTANDS IS
VERY NECESSARY.
AND I'M SURE UNDER YOUR
LEADERSHIP AND THE LEADERSHIP OF
YOUR CO-CHAIRS, YOU'LL NAVIGATE
THIS TO THE RIGHT PLACE.
SO WITH THAT, WE NOW TAKE A
BREAK, WHICH FOR SOME OF YOU IS
A LUNCH BREAK, FOR OTHERS, I'M
NOT SURE WHAT YOU'RE GOING TO DO
WITH THE TIME, CATCH UP ON YOUR
EMAIL, I GUESS, WHICH IS WHAT
I'M GOING TO DO.
BUT WE WILL RECONVENE AT
1:15 EASTERN STANDARD TIME, OR
10:15 ON THE WEST COAST, AND IF
YOU'RE IN THE MIDDLE OF THE
COUNTRY, YOU CAN FIGURE IT OUT
BECAUSE I HAVE NO IDEA.
SO -- BUT SO THANK YOU, AND
WE'LL SEE YOU BACK AT
1:15 EASTERN TIME.
THANKS, EVERYBODY.
SO THE LAST FORMAL TOPIC OF THE
ACD MEETING AGENDA THIS YEAR, OR
THIS MEETING, I SHOULD SAY, IS A
PRESENTATION AND THEN DISCUSSION
ABOUT THE NIH DATA SHARING
POLICY AND THE SUPPORT OF
INFRASTRUCTURE EFFORTS THAT THE
AGENCY IS PUTTING INTO PLACE.
I HOPE THIS IS NOT A NEW TOPIC
TO ANY OF YOU, WHETHER YOU ARE A
NEW MEMBER TO THE COUNCIL OR NOT
BECAUSE WE HAVE BEEN TALKING
ABOUT THIS BROADLY FOR A NUMBER
OF YEARS NOW, BUT WE ARE COMING
TO A KEY MOMENT RELATED TO SOME
IMPLEMENTATION, AND SO I'M GOING
TO TURN THIS OVER FIRST TO
DR. LYRIC JORGENSON, WHO I
INTRODUCED TO YOU YESTERDAY,
THEN DR. MICHAEL LAUER AND
FINALLY DR. SUSAN GREGURICK, ALL
OF WHOM WILL HAVE SOME THINGS TO
SHARE WITH YOU.
SO LET'S BEGIN, LYRIC, WITH YOU,
PLEASE.
>> THANKS SO MUCH, DR. TABAK.
IT IS MY PLEASURE TO BE HERE
WITH EVERYONE THIS AFTERNOON AND
OF COURSE ON THE BEHALF I MY
COLLEAGUES, MR. DAUER AND
DR. GREGURICK, WE'RE EXCITED TO
TALK ABOUT THE WORK NIH HAS BEEN
DOING TO ESTABLISH A CULTURE OF
SHARING WITHIN OUR COMMUNITY.
I'M GOING TO KICK US OFF TODAY
TALKING A LITTLE BIT ABOUT THE
VISION WE HAVE FOR OUR DATA
SHARING EFFORTS ALONG WITH THE
EFFORTS UNDERTAKEN TO DATE, THEN
I WILL TURN IT OVER TO MY
COLLEAGUES TO TALK ABOUT THE
IMPLEMENTATION AND SUPPORTIVE
INFRASTRUCTURE EFFORTS.
SO JUST TALKING A LITTLE BIT
ABOUT THE VISION NIH HAS
ESTABLISHED, FIRST WE HAVE TO
THINK ABOUT THE LIFE CYCLE OF A
PROJECT AND THE DATA THAT
UNDERLIE EACH STAGE.
EVERYONE HERE IS FULLY AWARE OF
THE COMPLEXITY OF A RESEARCH
PROJECT AND THE INFORMATION
GATHERED, AND THERE'S MANY
SUBCOMPONENTS WITHIN EACH OF
THESE STAGES.
I'M NOT GOING TO GET INTO
DETAILS ABOUT THESE KIND OF
SUBCOMPONENTS BECAUSE IT'S
REALLY JUST A SMALL SMATTERING
OF THE DIFFERENT COMPLEXITIES
AND THINKING ABOUT THE DATA
ECOSYSTEM AND THE LIFE CYCLE OF
THE RESEARCH PROJECT, BUT WHAT
IT REALLY TELLS YOU IS THE
COMPLEXITY AND NEED TO
ANTICIPATE WHAT THIS INTEGRATED
FLOW LOOKS LIKE OVER TIME, WHICH
IS REALLY REQUIRING COORDINATION
AND INTEGRATION ACROSS POLICY
IMPLEMENTATION AND
INFRASTRUCTURE.
THAT'S REALLY THE VISION WE'RE
HERE TO DESCRIBE TO YOU TODAY
AND HOW WE'RE ALL WORKING IN
CONCERT TO HAVE THESE KIND OF
COMPONENTS ALL LINKED TOGETHER.
SO BEFORE I TALK TOO MUCH ABOUT
OUR DATA SHARING POLICY AND
EFFORTS, I DID WANT TO REMIND
THE AUDIENCE OF HOW WE GOT HERE
TODAY.
AGAIN, AS LARRY MENTIONED, I'M
HOPING THIS ISN'T NEW TO ANYONE.
WE HAVE BEEN IN FACT TALKING
ABOUT OUR NEW DATA MANAGEMENT
SHARING POLICY FOR YEARS AND WE
ALSO HAVE HAD A LOT OF HISTORY
WITH DATA SHARING HERE AT NIH,
STARTING WITH THE 2003 NIH DATA
SHARING POLICY, THOSE ARE FOR
REALLY LARGE AWARDS.
WE'VE ALSO HAD SOME POLICIES
AROUND DATA-SPECIFIC TYPES,
THINKING OF THE VALUE OF HAVING
THAT INFORMATION READILY
ACCESSIBLE, SUCH AS GENOMIC DATA
OR CLINICAL TRIAL DATA.
AND OF COURSE MANY OF YOU ARE
PROBABLY FAMILIAR WITH VARIOUS
PROGRAMS AND INSTITUTE OR 16
CENTER-SPECIFIC POLICIES OR
GUIDELINES.
SO THIS IS A SNAPSHOT TO TELL
YOU THAT IT'S NOT A SURPRISE NIH
IS INVESTED IN DATA SHARING
POLICIES.
THE REASON FOR THAT IS PRETTY ON
OBVIOUS.
DATA SHARING ADVANCES THE NIH
MISSION.
DATA SHARING CAN SPARC NEW
RESEARCH COLLABORATIONS,
OBVIOUSLY WITH THE EXPERTISE TO
BE ABLE TO GENERATE COMPLEX
DATASETS.
SHARING DATA ALLOWS US TO
ENHANCE THE RIGOR OF STUDY
DESIGN.
OF COURSE SHARING THIS
INFORMATION IS HOPEFUL TO
AUGMENT THE RIGOR AND
REPRODUCIBILITY EFFORTS AT NIH.
THERE'S SOME VALUE IN MAKING
HIGH VALUE DATASETS AVAILABLE.
THIS WAS THE CASE IN UNDERLYING
IMPETUS FOR THE GENOMIC DATA
SHARING POLICY, WHERE THOSE
GENOMIC DATA WERE REALLY NEEDED
TO BE SHARED BROADLY SO PEOPLE
COULD MAKE THE MOST USE OF IT.
OF COURSE THERE ARE MANY OTHER
SCIENTIFIC REASONS OF WHY DATA
SHARING IS IMPORTANT TO US, BUT
IN GENERAL, WE'RE ALSO THINKING
ABOUT NOT ONLY HOW IT MAXIMIZES
DATA COLLECTION BUT IT ALSO
FOSTERS STEWARDSHIP AMONG THE
RESEARCH ECOSYSTEM AND PROVIDES
TRANSPARENCY IN HOW NIH MONEY IS
BEING INVESTED, PROVIDES
ACCOUNTABILITY FOR TAXPAYER
FUNDS, AND IN GENERAL, ADVANCING
SCIENCE AND AUGMENTING
STEWARDSHIP REALLY IS
ACCELERATING THE RESEARCH
ENTERPRISE SO THESE ARE THE
GOALS OF OUR DATA MANAGEMENT AND
SHARING POLICIES.
DATA SHARING FOR YOU ALL, I'M
SURE YOU'VE HEARD, IS SOMEWHAT
EXPECTED.
THE CURRENT LEADERSHIP OF THE
GOVERNMENT HAS BEEN A VOCAL
ADVOCATE FOR THE VALUE OF DATA
SHARING, PROVIDING THE NIH WITH
ACTUAL LEGAL AUTHORITIES FIRST
IN THE 21ST CENTURY CURES ACT TO
PROMOTE DATA SHARING.
THIS WAS FURTHER AUGMENTED BY
STATEMENTS BY OUR PREVIOUS
DIRECTOR, DR. FRANCIS COLLINS,
WHO WAS ALSO A CHAMPION DATA
SHARING EFFORTS, AND WE ARE
PLEASED TO SEE THESE EFFORTS
CONTINUALLY BEING CHAMPIONED BY
OUR CURRENT DIRECTOR, DR. TABAK
TODAY.
I ALSO WANTED TO SHARE, GIVEN
SOME CONTEXT OF WHAT YOU ALL
WERE DISCUSSING DURING THIS TWO
TWO-DAY MEETING IS THE VALUE OF
DATA SHARING IN TERMS OF
AUGMENTING PUBLIC TRUST.
SO THIS IS A STUDY FROM THE PEW
RESEARCH CENTER IN WHICH THEY
DID A SURVEY FOR ADULTS FOR WHAT
KIND OF FACTORS REALLY AFFECT
PUBLIC TRUST IN SCIENCE.
YOU SEE IN THIS TOP BAR WHEN
DATA IS MADE OPENLY AVAILABLE TO
THE PUBLIC, IT ACTUALLY ENHANCES
TRUST IN THE SCIENCE THAT IS
SUPPORTED.
THIS WAS A MOST SIGNIFICANT
FACTOR ABOVE AND BEYOND FUNDED
BY THE FEDERAL GOVERNMENT OR
FUNDED BY AN INDUSTRY GROUP, SO
THIS IS A COMPONENT OF THE
STEWARDSHIP FACTOR THAT WE WERE
TALKING ABOUT AS AN IMPETUS
PRIOR.
BEFORE WE TALK ABOUT THE POLICY
IN DETAIL, I WANTED TO REMIND
EVERYONE OF THIS LONG ARC,
AGAIN, THIS HAS BEEN SOME TIME
COMING AND IT'S BECAUSE IT'S
REALLY IMPORTANT FOR THE
SCIENTIFIC COMMUNITY AND THE
PUBLIC, THE DETAILS ARE
IMPORTANT.
WE FIRST STARTED IN 2016 WITH
ERNEST IN TERMS OF RELEASING
REQUEST FOR INFORMATION ON WHAT
ARE THE STRATEGIES FOR DATA
MANAGEMENT SHARING AND CITATION.
THIS IS A COMPONENT THAT WE GOT
A LOT OF FEEDBACK ON AND TURNED
INTO THE PROPOSED POLICY
PROVISIONS.
THAT'S REALLY WHAT DO WE THINK
THE NUTS AND BOLTS OF A GOOD
POLICY WOULD LOOK LIKE IN 2018.
THIS WAS AGAIN THEN TRANSFORMED
INTO DRAFT POLICY AND GUY
DARNTION WHICH WE GUE
WHICH WE ISSUED FOR PUBLIC
COMMENT AND GOT A LOT OF
VALUABLE FEEDBACK.
WE RECOGNIZE THE POLICY IS ONLY
ONE COMPONENT.
ADDITIONAL RESOURCES FOR HOW TO
IMPLEMENT THE POLICY ARE
CRITICAL FOR INNOCENT ADVISING A
CULTURE CHANGE.
THIS FINAL POLICY WAS RELEASED
IN 2020 BUT DOES NOT BECOME
EFFECTIVE UNTIL JANUARY OF 2023.
WE'LL TALK MORE ABOUT WHY THAT
IS, BUT IN SHORT, IT'S BECAUSE
OF THE WORK MY COLLEAGUES HAVE
BEEN DOING ON MAKING SURE THAT
THE IMPLEMENTATION HITS THE
RIGHT MARK AND THE
INFRASTRUCTURE IS IN PLACE TO
MAKE IT SUCCESSFUL.
WE ALSO DIDN'T CREATE THIS
POLICY IN A VACUUM.
BESIDES GOING OUT FOR PUBLIC
COMMENT, WE UNDERWENT TRIBAL
CONSULTATION TO UNDERSTAND THE
IMPLICATIONS FOR OUR TRIBAL
PARTNERS.
WE MET WITH MULTIPLE SECRETARY
ADVISORY COMMITTEES SUCH AS THE
ONES FOR HUMAN RESEARCH
PROTECTIONS.
WE WORKED ACROSS THE FEDERAL
GOVERNMENT AS WELL, RECOGNIZING
THE IMPORTANCE OF HAVING SOME
CONSISTENCY IN GOVERNMENT
EXPECTATIONS SUCH AS PARTNERS
WITHIN THE NATIONAL SCIENCE
FOUNDATION AND OF COURSE THE
WHITE HOUSE.
AND OF COURSE WORKING THROUGH
THE INSTITUTE AND CENTER
GOVERNANCE COMMITTEES HERE TO
MAKE SURE THAT OUR POLICY MET
THE BREADTH AND SCOPE OF THE
DIVERSITY OF SCIENCE THAT WE
FUND.
WHICH THEN BRINGS US TO THE
ACTUAL POLICY.
AGAIN, I'M HOPING THIS ISN'T A
SURPRISE TO ANYONE AND I'M JUST
GOING TO TALK ABOUT THE NUTS AND
BOLTS OF THE POLICY IN TERMS OF
TWO BASIC REQUIREMENTS.
THE TWO BASIC REQUIREMENTS OF
THE NEW NIH POLICY IS THE
SUBMISSION OF A DATA MANAGEMENT
AND SHARING PLAN, AND THIS IS
APPLICABLE TO ALL NIH-FUNDED
RESEARCH GENERATING SCIENTIFIC
DATA.
AGAIN, THE HOPE WITH THIS POLICY
IS THAT THIS HAS RESEARCHERS
PROSPECTIVELY PLAN FOR THE TYPE
OF DATA THEY INTEND TO GENERATE,
HOW THEY WILL MANAGE IT, AND
WHERE IT WILL BE SHARED.
AND OF COURSE ONCE THE PLAN HAS
BEEN SUBMITTED AND THE RESEARCH
PROJECT HAS BEEN SUPPORTED AND
APPROVED BY THE NIH, COMPLIANCE
WITH THAT PLAN WILL BE PART OF
THE REQUIREMENTS.
AS I MENTIONED, THIS POLICY WILL
GO INTO EFFECT JANUARY 25TH,
2023, AND IT WILL REPLACE THE
PREDECESSOR OF THE 2003 DATA
SHARING POLICY.
SO SOME HIGH LEVEL POINTS ABOUT
THE POLICY EXPECTATIONS.
SHARING SHOULD BE THE DEFAULT
PRACTICE.
AS MENTIONED, SHARING IS GOOD
FOR SCIENCE, SHARING IS GOOD FOR
TRUST, AND WE REALLY EXPECT THAT
DATA SHARING SHOULD BE
MAXIMIZED.
OF COURSE WE RECOGNIZE THERE ARE
JUSTIFIABLE LIMITS.
THERE MAY BE REASONS DATA
SHARING IS NOT IN THE INTEREST
OF SCIENCE OR PUBLIC TRUST.
THUS IN PLANS, YOU CAN DESCRIBE
TECHNICAL, ETHICAL OR LEGAL
FACTORS THAT PROHIBIT SHARING OR
WOULD BE AGAINST THE PRINCIPLES
OF PUBLIC TRUST OR CONSENT.
WE ALSO EXPECT THAT SHARING BE
RESPONSIBLY IMPLEMENTED,
OUTLINING THE PROTECTION OF
PRIVACY RIGHTS AND
CONFIDENTIALITY.
THIS IS ALSO IMPORTANT OF HAVING
THE PROSPECTIVE PLANNING SO THAT
THESE KIND OF COMPONENTS CAN BE
BUILT INTO CONSENT, YOU CAN
SHARE WITH PARTICIPANTS HOW
THEIR DATA WILL BE USED OR
INTENDED TO BE USED, AND
EVERYONE HAS A REAL HONEST
ASSISTMENT OF THE RESEARCH
PROACHES AL.
PROPOSAL.
IMPORTANTLY, THE POLICY EXPECTS
THAT ALL EXISTING LAWS,
REGULATIONS AND POLICIES ARE
ADHERED TO.
IT DOES NOT INTRODUCE ANY NEW
POLICIES AROUND PRIVACY OR
PROTECTIONS.
ALL OF THE EXISTING ONES
CONTINUE TO APPLY.
AS I MENTIONED, THE BEAUTY OF
THIS POLICY IN MY OPINION IS
REALLY THE PROSPECTIVE PLANNING
FOR HOW DATA WILL BE MANAGED AND
SHARED.
THINKING THROUGH ALL OF THESE
KIND OF ISSUES, WHAT THE
ETHICAL, TECHNICAL, LEGAL
FACTORS ARE IN ADVANCE ALLOWS
THE SCIENCE TO PROCEED WITHOUT
UNINTENDED HURDLES OR SOME BUMPS
IN THE ROAD THAT CAN DELAY
RESEARCH OR CAUSE CONSTERNATION
FOR THE RESEARCH PROCESS.
WE ARE AWARE THIS POLICY IS
FLEXIBLE.
IT IS DESIGNED TO BE FLEXIBLE,
RECOGNIZING THAT THE
INVESTIGATORS WORKING WITH THE
DATA KNOW THEIR DATA THE BEST.
AND THUS THIS IS REALLY THE ASK,
IS TO HAVE THE PLAN BE SUBMITTED
TO THE NIH BY THE INVESTIGATOR
WITH THE BEST PLAN FOR MANAGING
AND SHARING.
IMPORTANTLY, NIH EXPECTS THAT
ALL DATA BE MANAGED, THAT'S GOOD
STEWARDSHIP, BUT THAT DOES NOT
MEAN ALL DATA NEED TO BE SHARED.
THIS IS ONE OF THE MOST COMMON
QUESTIONS WE GET, IS WHICH DATA
SHOULD BE SHARED.
SO THE DEFINITION IN THE POLICY
IS ALL NIH SUPPORTED RESEARCH
GENERATING SCIENTIFIC DATA, AND
SCIENTIFIC DATA IS DEFINED AS
THE, QUOTE, RECORDED FACTUAL
MATERIAL, AND HERE I THINK IS
THE IMPORTANT PART FOR THIS
GROUP, IS OF SUFFICIENT QUALITY
TO VALIDATE AND REPLICATE
RESEARCH FINDINGS.
THIS IS REGARDLESS OF BEING
PUBLISHED OR UNPUBLISHED.
WE KNOW THAT A LOT OF DATA IS
SUBJECT TO DATA SHARING POLICIES
WHEN IT'S IN PUBLICATIONS, WE
WANT TO MAKE SURE UNPUBLISHED
DATA ALSO SEE THE LIGHT OF DAY
AND ARE SHARED APPROPRIATELY.
WHAT IS OUT ARE PHYSICAL
OBJECTS, LAB NOTEBOOKS,
PRELIMINARY ANALYSES, CASE
REPORTS AND MORE.
WE ALSO HAVE SOME FLEXIBILITY ON
TERMS OF WHEN THE DATA SHOULD BE
MADE AVAILABLE.
THE BASELINE PARAMETERS IN THE
POLICY IS THAT DATA SHOULD BE
AVAILABLE NO LATER THAN
PUBLICATION OR END OF THE AWARD.
AGAIN THIS IS IMPORTANT TO
CAPTURE THAT UNPUBLISHED DATA.
WE DO ENCOURAGE RESEARCHERS TO
THINK ABOUT HOW LONG DATA SHOULD
BE SHARED.
WE RECOGNIZE DATA MAY NOT BE
NEEDED TO BE SHARED IN
PERPETUITY SO WE ASK YOU THINK
THROUGH JOURNAL POLICIES,
REPOSITORY POLICIES AND MORE TO
DEFINE HOW LONG IT SHOULD BE
SHARED.
A QUICK NOTE ABOUT THE REVIEW
AND THE ASSESSMENT OF PLANS
SUBMITTED TO NIH.
WE EXPECT PLANS WILL BE
SUBMITTED WITH THE APPLICATION,
AND THIS IS IMPORTANT BECAUSE WE
RECOGNIZE THAT GOOD DATA
MANAGEMENT AND SHARING COMES
WITH SOME ASSOCIATED COST, AND
THUS THIS CAN BE PLANNED FOR IN
THE BUDGET PROPOSAL TO NIH.
THE PLANS WILL THEN BE ASSESSED
IN PEER REVIEW TO COMMENT BUT
NOT SCORE THE BUDGET.
NIH PROGRAM STAFF WILL REALLY
LOOK THROUGH THE PLAN TO SEE IF
IT MEETS THE SCIENTIFIC AIMS OF
THE INSTITUTE AND THE RESEARCH
GOALS.
IMPORTANTLY, PLANS CAN BE
REVISED DURING THE SUBMISSION
PROCESS TO REALLY MEET THE GOALS
FOR THE STUDY.
AFTER THE AWARD IS FUNDED, THE
PLAN COMPLIANCE WILL BE BUILT TO
THE TERMS AND CONDITIONS AND
MONITORED AT REGULAR INTERVALS.
COMPLIANCE MAY AFFECT FUTURE
FUNDING DECISIONS.
AGAIN, THE GOAL HERE IS TO
CHANGE THE CULTURE OF DATA
MANAGEMENT AND SHARING WHERE WE
PROVIDE ENOUGH INCENTIVES BUT AT
SOME POIRNGHTS
SOME POINT, WE DO WANT TO MAKE
SURE PEOPLE ARE MAKING GOOD TO
SHARE DATA AS PROMISED IN THE
PLANS.
ASSESSING DATA SHARING COSTS IS
AN ISSUE WE ARE ACTIVELY WORKING
ON AND ANALYZING, AND WE'LL
CONTINUE TRACKING THROUGH
IMPLEMENTATION OF THE POLICY.
BUT WE ARE PLEASED THAT OUR
PARTNERS AT THE NATIONAL
ACADEMIES HAVE UNDERTAKEN SOME
OF THESE EFFORTS AND HAVE
PROVIDED A FRAMEWORK FOR
COST-EFFECTIVE DECISION-MAKING
PRARDING
REGARDING PRESERVING, ARCHIVING
AND ACCESSING MEDICAL DATA.
THEY IDENTIFY SOME KEY STEPS AND
DECISION POINTS IN PLANNING FOR
COSTS, AGAIN THINKING ABOUT HOW
TO SUBMIT A BUDGET TO NIH.
THEY ALSO THINK ABOUT THE
RELEVANT LIFE CYCLE COSTS
DELINEATED.
THOSE COSTS TALKED ABOUT IN OUR
INTEGRATED IN THE BEGINNING,
ANTICIPATING BUDGETARY NEEDS.
WE ALSO AT THE END OF THE DAY
ARE REALLY WORKING TOWARDS
INVENT VIEDZING
INSEPTEMBER ADVISING
INCENTIVIZING, TO THINK THROUGH
HOW CAN WE CREATE THE INCENTIVES
TO REWARD THOSE WHO GENERATE
HIGH IMPACT, HIGH QUALITY
DATASETS, CURATE THOSE DATASETS
AND MAKE THEM AVAILABLE.
SO WE PARTNERED WITH NATIONAL
ACADEMIES TO HAVE A TWO-DAY
WORKSHOP ON CHANGING THE CULTURE
OF DATA MANAGEMENT AND SHARING
HAVING ALL THESE STAKEHOLDERS AT
THE TABLE, BRINGING THOSE WHO
HAVE BEEN DOING THIS FOR A LONG
TIME AND DOING IT WELL TO SHARE
BEST PRACTICES AND OTHERS TO
HEAR ABOUT WHAT ARE THE
CHALLENGES TO DATA MANAGEMENT
AND SHARING AND HOW CAN WE
REALLY PROVIDE SOME OF THOSE
INCENTIVES LIKE PERSISTENT
IDENTIFIERS AND MORE TO BE ABLE
TO TRACK SHARING INFORMATION.
AS I MENTIONED FROM POLICY TO
IMPLEMENTATION REALLY HAS TO BE
AN INTEGRATED AND SEAMLESS
EFFORT, THINKING ABOUT THE
INCENTIVES ALONG THE WAY SO THAT
WE CAN WORK TOGETHER IN GETTING
THIS OUT THE DOOR IN A WAY THAT
IS MOST EFFECTIVE.
THIS IS THEN TRANS-NIH
ENGAGEMENT, THINKING THROUGH
GOVERNANCE, INFRASTRUCTURE AND
RESOURCES AND WITH THAT, I WILL
TURN TO DR. LAUER, WHO CAN TELL
YOU MORE ABOUT HOW WE'VE MOVED
INTO THIS IMPLEMENTATION PHASE.
>> GREAT.
THANK YOU VERY MUCH.
CAN YOU HEAR ME OKAY?
>> YES, MIKE.
>> AWESOME.
SO THANK YOU VERY MUCH, AND I
JUST HAVE TO SAY, IT'S BEEN AN
ENORMOUS PLEASURE WORKING WITH
DR. JORGENSON AND WITH HER TEAM
AND WITH DR. GREGURICK AND HER
TEAM AS WE MOVE THIS FORWARD.
WE GO TO THE NEXT SLIDE.
SO WE'RE HEARING LOTS OF
QUESTIONS, AND WE'RE DOING OUR
BEST TO HEAR THEM AND RESPOND TO
THEM AND I'M GOING TO TALK ABOUT
SOME OF THESE.
ONE IS, WHAT EXACTLY IS IT THAT
WE'RE LOOKING FOR?
FLEXIBILITY CAN BE -- ONE
PERSON'S FLEXIBILITY CAN BE
ANOTHER'S AMBIGUITY.
A SECOND QUESTION IS ABOUT MONEY
AND BUDGET, AND THEN THE THIRD
IS ABOUT COMPLIANCE.
SO LET'S GO TO THE NEXT SLIDE.
SO WHEN THE POLICY WAS ISSUED
BACK IN OCTOBER OF 2020, THERE
WERE OTHER DOCUMENTS THAT WENT
ALONG WITH IT THAT WERE
PUBLISHED IN THE NIH GUIDE IN
WHICH WE TALKED ABOUT WHAT WERE
THE ELEMENTS THAT WE MIGHT BE
LOOKING FOR.
THESE ARE SPELLED OUT QUITE
EXPLICITLY, AND WILL BE AS WE
PUT OUT OUR APPLICATIONS AND
APPLICATION INSTRUCTIONS.
THESE ARE THE RECOMMENDED
ELEMENTS OF A PLAN AND INCLUDES
THE TYPE OF DATA, RELATED TOOLS,
SOFTWARE AND CODE, STANDARDS
THAT ARE GOING TO BE APPLIED,
PRESERVATION ACCESS AND
TIMELINES, HOW DISTRIBUTION AND
SHARING IS ACTUALLY GOING TO
HAPPEN, WHAT ARE GOING TO BE THE
SPECIFIC FACTORS, AND THEN WHO'S
GOING TO BE RESPONSIBLE FOR
OVERSEEING DATA MANAGEMENT.
AND WHAT WE'RE GOING TO SUGGEST
IS THAT DATA MANAGEMENT PLAPS PS
WOULD ADDRESS EACH OF THESE
ITEMS.
WE'RE GOING TO PUT OUT AN
APPLICATION FORM, WHICH IS A
FAIRLY SIMPLE TEMPLATE THAT
FOLLOWS EXACTLY WHAT WE POSTED
IN THOSE GUIDE NOTICES, AND
HOPEFULLY WE'LL MAKE IT
RELATIVELY STRAIGHTFORWARD FOR
PEOPLE TO PUT THEIR PLANS
TOGETHER.
WE RECOGNIZE THE DATA
MANAGEMENT, DATA SHARING IS NOT
FREE.
THERE ARE SOME REASONABLE COSTS
THAT CAN BE INCLUDED AS PART OF
DIRECT COSTS.
THIS INCLUDES CURATING DATA,
DEVELOPING DOCUMENTATION FOR
DATA, PRESERVING THE DATA IN
REPOSITORIES AND LOCAL DATA
MANAGEMENTMENT NOW, THERE
MANAGEMENT.
THERE ARE OTHER ITEMS WE WOULD
EXPECT WOULD BE COVERED AS PART
OF F & A OR INDIRECT COSTS, AND
THOSE SHOULD NOT BE SHIFTED TO
DIRECT COSTS, BUT WE'RE TRYING
TO BE AS EXPLICIT AS POSSIBLE
ABOUT WHAT WOULD BE REASONABLE
COSTS FOR DIRECT EXPENSES.
ANOTHER ISSUE IS WHERE THE DATA
SHOULD GO.
SO WE ENCOURAGE THE USE OF
ESTABLISHED REPOSITORIES.
I'M GOING TO TALK IN A MOMENT
ABOUT SOME RESOURCES THAT WE'VE
MADE AVAILABLE TO MAKE IT EASY
FOR RESEARCHERS TO IDENTIFY
APPROPRIATE REPOSITORIES.
SOME OF OUR ICs HAVE
REPOSITORIES AND IN SOME CASES
FOR SOME PROGRAMS, THE ICs SAY
YOU NEED TO USE OUR REPOSITORY
OR A SPECIFIC REPOSITORY.
WE'RE ALSO AWARE THAT A NUMBER
OF INSTITUTIONS AROUND THE
COUNTRY THROUGH THEIR LIBRARIES
EITHER HAVE PUT TOGETHER OR ARE
PUTTING TOGETHER ROBUST
REPOSITORIES FOR THEIR FACULTY.
ANOTHER ISSUE DEALS WITH CONSENT
LANGUAGE.
FOR HERE, I WANT TO GIVE
PARTICULAR CREDIT TO DR. JONI
RUDDER, ACTING DIRECTOR OF
NCATS.
SHE HEADED UP A TRANS-NIH
COMMITTEE THAT LOOKED AT
DEVELOPING MODEL CONSENT
LANGUAGE FOR SHARING DATA IN AS
BROAD A WAY AS POSSIBLE AND THAT
FOLLOWS APPROPRIATE GOOD CONSENT
PRACTICES.
THERE WAS A COMMUNITY OUTREACH
ON THIS, AND THE RESULT IS THIS
RESOURCE IS NOW AVAILABLE.
THE LINK IS ON THE BOTTOM.
THERE'S NOTHING MANDATORY HERE,
BUT WE THINK THAT THE COMMUNITY
WILL FIND THIS HELPFUL.
SO THIS GIVES ME AN OPPORTUNITY
TO DESCRIBE WHAT WE MIGHT THINK
OF AS A LABOR OF LOVE, AND THAT
WAS PUTTING TOGETHER THIS
DATA -- THIS WEBSITE.
IT'S AN EASY URL TO REMEMBER,
SHARING.NIH.GOV.
MY MAJOR GOAL FOR THIS
PRESENTATION RIGHT NOW IS TO
MAKE THE COMMUNITY AWARE OF THIS
WEBSITE AND STRONGLY ENCOURAGE
PEOPLE TO USE IT, AND ALSO
PROVIDE US WITH FEEDBACK ABOUT
WHAT MORE THEY WOULD LIKE TO
SEE.
BUT HERE WE HAVE IN ONE PLACE
INFORMATION ABOUT EXISTING DATA
MANAGEMENT AND SHARING POLICIES,
THE NEW DATA MANAGEMENT SHARING
POLICY, AS WELL AS OTHER
POLICIES THAT ARE RELEVANT SUCH
AS THE GENOMIC DATA SHARING
POLICY.
SO WE HAVE A WHOLE VARIETY OF
RESOURCES AVAILABLE HERE, HOW TO
WRITE A PLAN, HOW TO BUDGET.
WE ALSO PROVIDE INFORMATION ON
OTHER TYPES OF SHARING ISSUES,
SUCH AS GENOMIC DATA, MODEL
ORGANISM, CLINICAL TRIALS.
AT THE BOTTOM THERE, THERE'S A
BUTTON WHICH SAYS FIND OUT WHICH
POLICIES APPLY TO YOU.
THE IDEA OF THIS IS TO PROVIDE
AN EASY TO USE DECISION TOOL BY
WHICH RESEARCHERS CAN FIGURE OUT
WHAT POLICIES APPLY TO THE
SPECIFIC PROPOSAL THAT THEY
HAVE.
SO WE ARE NOW IN THE MIDST OF A
MAJOR COMMUNICATIONS BLITZ,
WHICH IS PART OF WHAT WE'RE
DOING RIGHT NOW AT THIS VERY
MOMENT.
WE'VE HAD WEBINARS AND WE WILL
HAVE MORE WEBINARS, WE ARE
PUTTING OUT FSM A FAQs THAT N
THE WEBSITE, AND AS WE HEAR MORE
FAQs AT MEETINGS LIKE THIS AND
ELSEWHERE, WE'LL POST THEM.
WE'VE PUT OUR DRAFT GUY GUIDAR
RESEARCHERS WORKING WITH
AMERICAN INDIAN AND ALASKA
NATIVE PARTICIPANTS.
WE ARE PLANNING TO PUT OUT
ADDITIONAL SUPPLEMENTAL
INFORMATION.
AT SOME POINT, WE WILL PUT OUT
SAMPLE PLANS.
THIS IS KIND OF SIMILAR TO WHAT
WE DID FOR PLANS ON
AUTHENTICATING RESOURCES AS PART
OF OUR RIGOR EFFORTS.
WE WANT TO MAKE SURE THAT THESE
SAMPLE PLANS ARE USEFUL BUT AT
THE SAME TIME NOT CONSTRICTING,
THAT WE DON'T HAVE PEOPLE THINK
THAT THIS IS THE ONLY THING
THAT'S ACCEPTABLE.
WE ARE WORKING ON HARMONIZING
THIS POLICY WITH THE GENOMIC
DATA SHARING POLICY.
PEOPLE WHO ARE GOING TO BE
INCLUDING GENOMIC DATA AS PART
OF THEIR PROPOSAL DO NOT NEED TO
SUBMIT TWO PLANS.
THERE WILL ONLY BE ONE PLAN THAT
WILL NEED TO BE SUBMITTED.
AND THIS IS A LEARNING ACTIVITY
WHICH MEANS THE POLICY WILL BE
IMPLEMENTED IN JANUARY OF 2023,
BUT THERE WILL BE ONGOING
ASSESSMENT, SHORT TERM
ASSESSMENT, LONGER TERM
ASSESSMENT AS WE WORK TO MAKE
THIS THING BETTER, AND ALSO TO
ECHO LYRIC, THAT WE HELP TO
SHIFT A CULTURE WHEREBY PEOPLE
WANT TO SHARE DATA NO
DIFFERENTLY THAN PEOPLE WANT TO
PUBLISH THEIR RESULTS IN PEER
REVIEWED JOURNALS.
THANK YOU VERY MUCH.
>> THANK YOU.
I THINK WE'LL WAIT TO TAKE
QUESTIONS.
IF THAT'S OKAY.
IT'S REALLY BEEN A WONDERFUL
EXPERIENCE TO WORK WITH
DR. LAUER AND DR. JORGENSON AND
ALL OF THEIR TEAM IN THINKING
ABOUT THE DATA MANAGEMENT AND
SHARING POLICY AND THE
INFRASTRUCTURE THAT WOULD
SUPPORT THESE EFFORTS.
WE DO RECOGNIZE THAT THERE'S
LIKELY NO ONE SIZE FITS ALL
SOLUTION TO SHARING DATA.
RESEARCHERS ACROSS OUR
BIOMEDICAL ENTERPRISE HAD
DIFFERENT EXPECTATIONS AND
EXPERIENCES AND REALLY DIFFERENT
NEEDS FOR DATA SHARING.
SO FOR EXAMPLE, NIH
INVESTIGATORS CAN SHARE DATA AS
PART OF THEIR SUPPLEMENTAL
MATERIALS ASSOCIATED WITH
PUBLICATIONS, AND THESE ARE
SHARED VIA PUBMED CENTRAL.
PUBMED CENTRAL DATA SHARED
THROUGH OUR STRIDES PLATFORM
THAT CAN BE FOUND, CITE AND
RE-USED RESEARCH FROM THAT
CAPABILITY.
YOU'LL SEE THAT ON THE FAR
LEFT-HAND SIDE OF THE SLIDE.
IN ADDITION, INVESTIGATORS CAN
SHARE DATA AND OTHER DIGITAL
MATERIALS FROM THEIR RESEARCH
EFFORTS FROM DIFFERENT
REPOSITORIES AND THROUGH OUR
STRIDES PROGRAM WHICH IS A
PARTNERSHIP WITH AWS AND GOOGLE
AND MICROSOFT AZURE.
CURRENTLY NIH STORES OVER 170 PE
170 PETABYTES VIA THE STRIDES
PROGRAM.
I DO WANT TO STRESS, HOWEVER, AS
A FIRST CHOICE, NIH DOES
STRONGLY ENCOURAGE RESEARCHERS
TO SHARE THEIR RESEARCH DATA IF
APPROPRIATE IN AN OPEN ACCESS
DOMAIN-SPECIFIC DATA REPOSITORY,
AND RESEARCHERS CAN FIND A LIST
OF THE NIH-SUPPORTED OPEN ACCESS
DOMAIN DATA REPOSITORIES THROUGH
THE WEBSITE THAT MIKE JUST
MENTIONED, SHARING.NIH.GOV.
NIH RECOGNIZES THAT OUR
SUPPORTED DOMAIN SPECIFIC
REPOSITORIES REALLY COME IN
DIFFERENT SIZES, DIFFERENT
LEVELS OF COMPLEXITY -- AND
DIFFERENT LEVELS OF MATURITY.
EACH REPOSITORY HAS POTENTIAL TO
BRING VALUE TO OUR DATA SHARING
COMMUNITIES.
EACH REPOSITORY HAS
VARYING DEGREES TO ADHERE TO THE
CHARACTERISTICS OF A DATA
REPOSITORY THAT IS A GOAL THAT
IS SUPPORTED THROUGH OUR NIH
DATA MANAGEMENT AND SHARING
POLICY, AND YOU CAN SEE THAT
LINKED THROUGH THE POLICY
ITSELF.
IN ADDITION, SUPPORTING THE
COMMUNITY AND DATA REPOSITORIES
TO ALIGN WITH THE FAIR
PRINCIPLES AND THE TRUST
PRINCIPLES ENSURES THAT DATA ARE
SHARED AND ARE RE-USED.
MOREOVER, CREATING A COMMUNITY
OF PRACTICE AND AN UNDERSTANDING
FOR METRICS FOR DATA AND FOR
REPOSITORIES TO UNDERSTAND THE
USAGE, THE UTILITY AND THE
SCIENTIFIC IMPACT OF THESE DATA
AND THESE REPOSITORIES, IS NOT
ONLY AN AGENCY GOAL, BUT IS A
GOAL SHARED ACROSS THE FEDERAL
AND THE INTERNATIONAL
COMMUNITIES.
FOR THE PAST TWO YEARS, NIH HAS
SUPPORTED SUPPLEMENTAL FUNDING
TO OUR NIH AWARDED GRANTEES,
CONTRACTS, AND INTRAMURAL DATA
REPOSITORIES TO ALIGN WITH THE
OSTP DESIRED CHARACTERISTICS.
TO ENHANCE FAIR DATA SHARING,
AND TO CREATE WITHIN THE
REPOSITORY A TRANSPARENCY OF
THEIR FUNCTIONS.
A A RESPONSIBILITY FOR DATA
STEWARDSHIP, A FOCUS ON
USER-FOCUSED COMMUNITY-DRIVEN
CAPABILITIES, AN UNDERSTANDING
TO SUSTAIN AND ENSURE
UNINTERRUPTED ACCESS TO DATA,
AND TO PAY ATTENTION TO
TECHNOLOGIES.
THESE ARE THE TRUST PRINCIPLES.
TO DATE, NIH HAS SUPPORTED 17
AWARDS INCLUDING THREE
INTRAMURAL DATA REPOSITORIES AND
SOME OF WHICH YOU SEE LISTED ON
THE LEFT-HAND SIDE OF THE SCREEN
AND I HOPE MOST OF THESE, YOU'RE
AWARE.
NIH ALSO SUPPORTS FUNDING
OPPORTUNITIES FOR NEW AND
EXISTING DATA REPOSITORIES AND
KNOWLEDGE BASES AS BIOMEDICAL
DATA RESOURCES WITH A SEPARATE
PAR FUNDING MECHANISM AND A
SPECIAL EMPHASIS PANEL THAT'S
OVERSEEN BY THE CENTER FOR
SCIENTIFIC REVIEW.
THIS PROGRAM AND THESE FUNDING
ANNOUNCEMENTS REQUIRE THAT DATA
REPOSITORIES AND KNOWLEDGE-BASED
APPLICANTS REPORT AN IC MISSION
IN DATA MANAGEMENT AND SHARING
WITH A DEMONSTRATED SCIENTIFIC
IMPACT FOR THAT IC OR ACROSS A
NUMBER OF ICs.
APPLICANTS WILL ADDRESS THE
QUALITY OF DATA SERVICES AND
ADDRESS METHODS THAT WILL
INCREASE EFFICIENCY OF
OPERATIONS THAT COULD INCLUDE
BUT ARE CERTAINLY NOT LIMITED TO
AUTOMATED CAPABILITIES FOR CURE
RANGE OF MOTION OR
CURATION, OR LEVERAGING CLOUD
INFRASTRUCTURES, JUST FOR
EXAMPLE.
APPLICANTS NEED TO ARTICULATE AN
ENGAGEMENT STRATEGY WITH THEIR
SCIENTIFIC COMMUNITIES AND WITH
THEIR SCIENTIFIC JOURNALS THAT
WOULD ALIGN WITH THEIR FOCUS.
THEY ALSO NEED TO ESTABLISH
TRANSPARENCY OF GOVERNANCE.
WE ARE ALSO ENCOURAGING GOOD
DATA MANAGEMENT PRACTICES AND
DATA LIFE CYCLE PRACTICES AS
WELL AS DEVELOPING OPENLY SHARED
METRICS FOR USE IN UTILITY.
A FEW FUNDED REPOSITORIES AND
KNOWLEDGE BASES ARE LISTED ON
THE SLIDE.
IN ADDITION TO ALL OF THE GREAT
DOMAIN-SPECIFIC REPOSITORY
OPPORTUNITIES TO SHARE DATA,
GENERAL LIST REPOSITORIES OFFER
ADDITIONAL CAPABILITIES TO SHARE
DATA AND SCIENTIFIC DIGITAL
PROJECTS AS A RESULT OF OUR
RESEARCH.
THIS YEAR NIH HAS LAUNCHED A NEW
PROGRAM THAT'S THE GENERAL
REPOSITORY ECOSYSTEM INITIATIVE
AND IT SUPPORTS A COLLABORATION
BETWEEN THE SIX GENERAL LIST
REPOSITORIES YOU'RE SEEING
LISTED AT THE BOTTOM OF THE
SLIDE.
CERTAINLY WE COULD INCLUDE
ADDITIONAL REPOSITORIES IN THE
FUTURE.
THE GOAL IS OF COURSE TO MAKE
DATA SHARING EASIER, TO IMPROVE
THE ABILITY TO DISCOVER AND
RE-USE NIF DATA ACROSS THESE
REPOSITORIES, TO ENHANCE RIGOR
AND REPRODUCIBILITY, DEVELOPING
A SHARED SET OF CORE METRICS
ACROSS THESE REPOSITORIES, AND
ENCOURAGE THE RE-USE OF THESE
DATA THROUGH TRAINING
ENGAGEMENTS WITH THE RESEARCH
COMMUNITY.
SO THE NEXT SLIDE JUST
ARTICULATES A BIT MORE OF THE
SPECIFIC GOALS OF THIS PROGRAM.
GOALS INCLUDE ALIGNING WITH THE
OSTP DESIGN CHARACTERISTICS.
WAYS TO ENHANCE BROWSING AND
SEARCHING ACROSS THESE GENERAL
LIST REPOSITORIES FOR NIH-FUNDED
DATA, A WAY TO DEVELOP
CONSISTENT METADATA MODELS THAT
CAN BE SHARED ACROSS THESE
REPOSITORIES, PROVIDE A
CONNECTIVITY OF DIGITAL OBJECT
IN SUPPORTING USE CASE AND
EDUCATIONAL MATERIALS, IMPORTANT
BLI IMPLEMENTING OPEN AND
SHAREABLE METRICS FOR SUCCESS
ACROSS ALL THESE REPOSITORIES,
AND GAINING WITH THE COMMUNITY,
LEARNING AND DEVELOPING NEW DATA
SHARING CAPABILITIES THROUGH
OPEN WORKSHOPS.
ARE THE NEXT SLIDE, SO WE HAVE
PARTNERED TO CREATE A NEW DATA
WORKS CHALLENGE.
THIS IS A LITTLE BIT OUTSIDE OF
THE BOX OF A TRADITIONAL
CHALLENGE.
THIS PRIZE FUELS DATA SHARING
AND DATA RE-USE IN AN ANNUAL
CHALLENGE TO SHOWCASE THE
BENEFITS OF RESEARCH DATA
MANAGEMENT WHILE ALSO
RECOGNIZING AND REWARDING TEAMS
WHOSE RESEARCH DEMONSTRATES THE
POWER OF DATA SHARING OR DATA
RE-USE PRACTICES IN THE
SCIENTIFIC COMMUNITY.
REALLY INNOVATIVE APPROACHES TO
FIELDS OF BIOLOGY AND BIOMEDICAL
RESEARCH.
WE ANTICIPATE UP TO 12 MONETARY
PRIZES FOR TEAMS THAT HAVE
DEMONSTRATED DATA SHARING AND
DATA RE-USE.
THE TOTAL FIRST PRIZE IS
$500,000.
NOT SHOWN ON THE SLIDE IS THAT
YOU HAVE TO REGISTER VIA THIS
HERO X PLATFORM BY JUNE 28TH.
SO I HOPE THAT IF YOU'RE
INTERESTED, YOU WILL REGISTER
FOR THE PRIZE.
I HOPE YOU'LL JOIN NIH AND OUR
OFFICE ON THE SECOND FRIDAY OF
EACH MONTH.
WE ACTUALLY HAD OUR LAST SEMINAR
ABOUT AN HOUR AND A HALF AGO.
HERE IN THIS SEMINAR SERIES, WE
SHOWCASE NIH-SUPPORTED
RESEARCHERS, YOU'LL SEE A FEW
LISTED HERE, AND THE SPONSORING
INSTITUTES TO SHARE AND RE-USE
DATA.
DR. KAREN ADOLPH, HER USE OF
VIDEO AS DATA, OPEN DATA
REPOSITORIES TO ACCELERATE
CLINICAL PRACTICES ACROSS MANY
DISEASES, INCLUDING DENGUE, THAT
WAS A RECENT PUBLICATION OF HIS.
AND DR. ALEX ROPELEWSKI, SHARING
MICROSCOPIC IMAGES IN THE
MICROSCOPIC LIBRARY.
OUR LAST SLIDE IS REALLY JUST TO
HIGHLIGHT THAT SCIENTIFIC DATA
ARE THE CATALYSTS FOR BIOMEDICAL
BREAK THROUGHS.
INTEGRATING POLICIES, RESOURCES
AND INFRASTRUCTURE ARE KIEL TO
THE SUCCESS OF DATA SHARING AND
DATA RE-USE, AND WE AIM TO
PROMOTE EFFECTIVE DATA SHARING
AS THE RULE, NOT AS THE
EXCEPTION.
WITH THAT, I'M TURNING BACK OVER
TO YOU, LYRIC, TO HEAD THE
QUESTION AND ANSWERS.
>> I WILL TURN IT BACK TO
DR. TABAK, WHO CAN MODERATE ANY
QUESTIONS THAT ANYONE MAY HAVE.
>> THANKS.
SO TARA, ARE YOU GOING TO DO
THAT, PLEASE?
>> SURE, HAPPY TO.
>> THANKS.
>> SO WE HAVE A COUPLE HANDS UP
ALREADY AND A FEW QUESTIONS IN
THE CHAT.
SO ALEX IS ALEXA, WE'LL STA.
YOU'RE MUTED.
>> ARE YOU STARTING WITH ME OR
DAVID?
I THINK DAVID -- I'LL GO.
THIS IS A GREAT PRESENTATION.
I CARE A LOT ABOUT DATA SHARING,
DATA RE-USE, SO I APPLAUD, WE'RE
FINALLY REACHING THE DATE.
A COUPLE QUESTIONS ON THE
EXECUTION AND THE COMPLIANCE.
FIRST OF ALL, NIH PROGRAM STAFF
ARE GOING TO BE REVIEWING WHAT'S
SUBMITTED OR PROPOSED.
HOW WILL THEY RECEIVE TRAINING
ON WHAT'S REASONABLE TO EXPECT
OR REQUIRE FROM THE APPLICANTS?
IS THERE A PROCESS IN PLACE?
OTHERWISE THEY'RE GOING TO BE
INCONSISTENCIES.
INTO
>> I CAN START WITH THAT.
SO YES, THIS IS SOMETHING WE ARE
WORKING ON.
WE ARE PROVIDING TOOLS, WE'RE
PROVIDING TRAINING, THERE'S BEEN
EXTENSIVE OUTREACH.
WE AS I MENTIONED AT SOME POINT
WILL HAVE SAMPLE PLANS THAT WILL
UP THAT WILL ALSO HELP WITH
THIS.
THE OTHER THING THAT WE'RE
WORKING ON IS, WE'RE HOPING THAT
MOST OF THESE ARE FAIRLY
STRAIGHTFORWARD, BUT PUTTING
TOGETHER A GROUP OF EXPERT WHO
WILL DEAL WITH THE ONES THAT ARE
NOT.
AND PROVIDE A RESOURCE TO MAKE
THIS AS CONSISTENT AS WE
POSSIBLY CAN ACROSS A LARGE
AGENCY.
>> GOING ON WITH THAT, I MEAN,
WILL DATA SHARING BE REVIEWED
ANNUALLY?
IT'S STILL A LITTLE BIT PUZZLING
ON THE ARROW SLIDE THAT YOU GUYS
SHOWED, THAT FUTURE FUNDING
MIGHT BE IMPACTED IF ONE DOESN'T
SHARE DATA, BUT THAT COULD ALSO
MEAN THE COMPETITIVE RENEWAL
STAGE.
IS THIS GOING TO BE FOR EXAMPLE
AN ANNUAL RPPR, WHICH ADMITTEDLY
ALREADY CONTAINS MANY ELEMENTS.
IS THERE A NEW ELEMENT PROPOSED
FOR ONCE THE DATA HAS BEEN
SHARED?
>> WE WILL BE MONITORING THIS IN
PART THROUGH THE RPPR.
NOW WHAT MAY BE POSSIBLE IS AT
THE END OF A YEAR, A RESEARCHER
MAY SAY WE HAVEN'T GENERATED ANY
DATA READY FOR SHARING AND THAT
WILL BE FINE, BUT SINCE THIS IS
PART OF THE STANDARD TERM AND
CONDITION OF AWARD, THIS WILL BE
PART OF THE RPPR FOLLOW-UP.
>> I'LL ASK ONE MORE.
I'VE GOT A BUNCH MORE BUT I'LL
LET OTHERS ASK TOO.
SO I HAVE A HARD TIME WITH ANY
CONCEPT OF A PROGRAM OFFICERS
BEING KIND OF TRAFFIC COPS HERE.
BECAUSE IN THE 20 YEARS I'VE HAD
NIH FUNDING, I'VE SEEN PROGRAM
OFFICERS WANTING TO CHERISH
THEIR BEST SCIENTIST, SO WHEN A
TOP PERFORMING SCIENTIST DOESN'T
FOLLOW SOME OF THESE RULES, I
DON'T OFTEN SEE PROGRAM OFFICERS
HOLDING THEM TO TASK BECAUSE
THEIR JOB IS TO GET THE VERY
BEST SCIENCE AND THE VERY BEST
SCIENTISTS.
HOW, FOR EXAMPLE, IS A PROGRAM
OFFICER GOING TO BE ABLE TO
CHALLENGE, LET'S SAY, A TOP
TIER, TOP PERFORMING PRINCIPAL
INVESTIGATOR OF A HUMONGOUS
MULTICENTER CLINICAL TRIAL, HOW
DO YOU ACTUALLY SEE THAT CULTURE
ACTUALLY WORKING?
>> OH, WOW, THAT'S GREAT.
THANK YOU, THAT'S A GREAT
QUESTION.
SO ONE WAY OF THINKING ABOUT
THIS IS THAT COMPLIANCE CONCERNS
REALLY SHOULD NOT BE MANAGED BY
PROGRAM STAFF.
WE HAVE GRANTS MANAGEMENT STAFF
AND THEN WE HAVE US, IN THE
OFFICE OF EXTRAMURAL RESEARCH,
TO DEAL WITH COMPLIANCE
CONCERNS.
AND WE ARE NOT AFRAID OF
ANYBODY, AND SOMETIMES THAT'S
GOTTEN US INTO A LITTLE BIT OF
HOT WATER.
BUT WE HAVE COMPLIANCE AND
INTEGRITY TRAINING FOR OUR
PROGRAM STAFF AND ONE OF THE KEY
MESSAGES IS THAT WHEN YOU'RE
RUNNING INTO PROBLEMS, HERE ARE
THE PEOPLE THAT YOU GO TO, AND
IN FACT IN MANY CASES WHAT WE
SAY IS, DON'T TRY TO HANDLE
THIS.
WE WILL BE DELIGHTED TO HANDLE
THIS HEADACHE, AND THEN WE'LL DO
WHATEVER WE NEED TO DO.
>> THAT'S GOOD.
I'M GOING TO LET OTHERS ASK
QUESTIONS.
>> CAN I SUPPLEMENT THAT ANSWER
A LITTLE BIT, MIKE, THINKING
FROM THE POLICY INCENTIVE
COMPONENTS, YOU'LL SEE IN THE
POLICY LANGUAGE, WE'VE ALSO
PROPOSED AT SOME POINT IN TIME
MAKING PLANS AVAILABLE TO THE
PUBLIC.
SO OUR A RESEARCHER'S PROPOSEN
IS NOT ONLY GOING TO HAVE
COMPLIANCE BY THE FEISTY PEOPLE
IN OFLT AR, BUT PEOPLE THAT CAN
HOLD THEIR OWN COMMUNITY
SLIGHTLY ACCOUNTABLE.
THE ECOSYSTEM VERSUS A SINGLE
SOURCE.
>> THAT WAS ONE OF THE THREE
MORE I WAS GOING TO ASK ABOUT,
SINCE WE MAKE PROJECT NARRATIVES
PUBLIC, WHY NOT MAKE THESE
PUBLIC.
THAT'S GREAT, THANK YOU.
>> AGAIN I JUST APPLAUD THIS
EFFORT, CLINICALTRIALS.GOV, AND
HAVING THE PATIENT LEVEL DATA
ANONYMOUSLY HAS REALLY FRANKLY
TRANSFORMED THE SPEED OF
CLINICAL DEVELOPMENT AND I
EXPECT THIS WILL ADVANCE SCIENCE
SUBSTANTIALLY AS WELL.
SO MICHAEL, ONE THING YOU MIGHT
ADD TO YOUR FAQs AND TALKING
POINTS THAT I'M HEARING A LOT OF
IS THE QUESTIONS ON HOW THE IDC
MIGHT BE ADJUSTED GLG OVER R
TIME FOR INSTITUTIONS THAT HAVE
TERABYTES WORTH OF DATA, THEY
ARE REALLY CONCERNED ABOUT THE
SUSTAINABILITY OF THE COST AND
HOW THAT INITIAL OUTLAY IS GOING
TO GET INCORPORATED AND
RECALCULATED.
SO LOVE TO HAVE THAT ADDRESSED
HERE BUT IT MAY BE A COMMON
QUESTION.
>> THANK YOU.
WE'LL DEFINITELY DO THAT.
>> I HAVE ON THE LIST DINA AND
DAVID BECAUSE YOU HAD PUT
SOMETHING IN THE CHAT BUT I SEE
YOUR HAND UP, WAAFA AND THEN
SHELLEY.
WE'LL JUST 50 GO FROM THERE.
DINAH?
>> OF COURSE GIVEN THAT I AM A
COMPUTER SCIENTIST AND DATA IS
ESSENTIAL FOR ANY MACHINE
LEARNING ALGORITHM, I REALLY
APPLAUD THIS EFFORT, AND VERY
IMPRESSED WITH ALL THE STUFF YOU
GUYS ARE DOING.
HOWEVER, FROM MY EXPERIENCE, YOU
ARE NOT ADDRESSING THE BIG AND
THE NUMBER ONE PROBLEM THAT MAKE
DATA TODAY INACCESSIBLE.
AND LET ME TELL YOU WHAT HAPPENS
TODAY.
WHAT HAPPENS IS ANY GRANT THAT
IS LIKELY TO GENERATE IMPORTANT
DATA MOST LIKELY HAS MULTIPLE
ENTITIES WITH A PRIME ENTITY,
THE PASSTHROUGH ENTITY BEING ONE
OF THE BIG HOSPITALS.
NOW, IN THE HOSPITAL, YOU HAVE
THE SCIENTISTS, YOU HAVE THE
PIs, AND YOU HAVE THE BUSINESS
PEOPLE WHO RUN THE ORGANIZATION
BUSINESS.
AND THE PERSPECTIVE OF OF THE
BUSINESS PEOPLE, IT'S WIDELY
KNOWN THAT DATA IS THE NEXT OIL.
BASICALLY DATA IS OIL.
DATA IS MONEY.
AND THEREFORE, IF DATA IS
SHARED, THAT HAS IMPLICATION TO
THE PROFIT OF THE HOSPITAL.
SO THERE ARE THE SCIENTISTS WHO
MIGHT WANT VERY MUCH TO SHARE
THE DATA AND MAXIMIZE THE
RESEARCH IMPACT AND ALL OF
THIS -- THE GOOD STUFF THAT WE
ARE TALKING ABOUT, BUT THEN
THERE IS THE BUSINESS PEOPLE AND
WL THE
WITH THE LEGAL TEAM THAT FINDING
MANY LEGAL CONSTRUCTIONS TO MAKE
THAT ON THE GROUND --.
SO I TRY TO ACCESS DATA, FOR
EXAMPLE, FROM PUBLICLY
AVAILABLE -- ON THE NIH AND IT
SAYS CONTACT THE PIs OR THE
INSTITUTION.
WHEN I CONTACT THE INSTITUTION,
I DON'T GET ANSWER TO MY EMAILS.
I CALL, I DON'T GET CONNECTED TO
THE PIs.
IT JUST AFTER ONE YEAR OF TRIAL,
I JUST GIVE UP AND MY STUDENTS
GIVE UP.
SO THIS IS THE REALITY ON THE
GROUND.
NOT ONLY THIS.
I AM ON NIH GRANTS WITH OTHER
INSTITUTIONS WHERE THE HOSPITAL
IS THE PRIME AND WE ARE
SUBCONTRACT FOR EXAMPLE AT MIT.
THE HOSPITAL SENDS US DATA USE
AGREEMENTS THAT PREVENT US FROM
SHARING COMPLETELY DE-IDENTIFIED
DATA WITH OTHER RESEARCHERS OR
DOING ANYTHING OUTSIDE THE VERY,
VERY SPECIFIC THING THAT THEY
WANT.
SO UNLESS THESE THINGS ARE
ADDRESSED, YOU REALLY CANNOT
ACHIEVE THE GOAL.
>> THANK YOU SO MUCH FOR RAISING
THAT POINT.
WE CERTAINLY AGREE WITH YOU THAT
THAT IS THE CURRENT LANDSCAPE
FOR SOME.
I THINK THERE WAS A REALLY
GOOD -- WELL, NOT GOOD --
DEPRESSING PUBLICATION ABOUT
ACCESSING DATA IN CANCER THAT
REALLY REPLICATED THIS PROBLEM.
AND I THINK THIS REALLY IS WHAT
THE POLICY HOPES TO ADDRESS.
WE WILL OF COURSE BE ASSESSING
IF WE'VE ACTUALLY INTENDED TO
ADMIT THOSE GOALS, BUT MAX
MAXIMIZING DATA SHARING IS A
REQUIREMENT AND IMPORTANTLY IF
YOU HAVE A CHANCE TO LOOK, I
ENCOURAGE EVERYONE TO LOOK AT
THE SUPPLEMENTAL INFORMATION.
WE ACTUALLY ENCOURAGE
RESEARCHERS TO SAY IN THEIR PLAN
WHERE THEY WILL BE DEPOSITING
THE DATA.
AGAIN, HOLDING PEOPLE
ACCOUNTABLE TO NOT HAVE TO BE
BEHOLDEN TO ASKING THE
INVESTIGATOR TO PROVIDE THE DATA
BUT BEING ABLE TO LOOK AT THE
PLAN TO SEE WHERE THE DATA
SHOULD BE DEPOSITED TO BE ABLE
TO ACCESS IT FROM THOSE REGIONS,
SO IT'S NOT, AGAIN, BEING HELD
BY ONE CENTRAL ENTITY.
SO THAT IS ONE OF THE COMPONENTS
THAT WE'RE HOPING TO BUILD IN
HERE TO MAKE IT MORE ACCESSIBLE.
ONE OF THE OTHER COMPONENTS, AND
I WANTED TO RAISE FOR THIS GROUP
ALSO, GIVEN YOUR EARLIER
CONVERSATIONS, IS MAKING DATA
AVAILABLE DOES NOT MEAN IT IS
VALUABLE.
WE REALLY ARE STRIVING TO
INCREMENTALLY INCREASE
REQUIREMENT OR EXPECTATIONS
AROUND MAKING DATA FAIR.
WE DID NOT EXPLICITLY REQUIRE IN
OUR POLICY FOR DATA TO BE MADE
FINDABLE, ACCESSIBLE,
INTRAOPERABLE, REUSABLE, FOR THE
PURE REASON OF CONSIDERING
EQUITY.
WE WANT TO SET A BASELINE BAR
FOR PEOPLE TO SHARE DATA AND
HAVE THAT EXPLICIT EXPECTATION
OF THE AGENCY BUT WE -- EDGE
PEOPLE OUT, SO WE WANTED TO
START HERE TO GET EVERYONE TO
UNDERSTAND THE EXPECTATIONS
MOVING FORWARD AND THEN WORK
VERY HARD AS A COMMUNITY TO MAKE
SURE IT'S NOT A CHECK BOX OF
MAKING DATA AVAILABLE BUT
ACTUALLY MAKING IT USEFULLY
AVAILABLE.
>> CAN I JUST ADD ONE MORE
THING?
SO FROM MY EXPERIENCE, IT WOULD
BE A REALLY -- I WILL ENCOURAGE
YOU TO LOOK AT THE FOLLOWING TWO
THINGS.
ONE THING IS THAT IN EVERY
PROPOSAL OR GRANT THAT NIH
GRANTS TO SOMEONE, IS TO HAVE
THEM SPECIFICALLY SAY WHICH DATA
WOULD BE SHARED, LIKE WITH THE
PUBLIC, OR RESEARCHERS, NOT LIKE
FOR RESEARCH PURPOSES, I'M NOT
EVEN TALKING COMMERCIAL OR
ANYTHING LIKE THAT, AND WHICH IS
NOT GOING TO BE SHARED.
AND TO ENCOURAGE THEM TO MAKE
SURE THAT THE DATA THAT IS
SHARED, THAT THEY EXPLICITLY
STATE WHAT IT IS AND MAKE IT
COMPLETELY DE-IDENTIFIABLE.
AND IT DOESN'T NEED TO BE
LIKE -- MOST OF THE PEOPLE WHO
WANT TO USE THE DATA, THEY CAN
WORK ON MAKING USABLE DEALING
WITH ALL OF THE PROBLEMS,
DEALING WITH ANY COMPUTATION
ISSUES AND ALL OF THAT STUFF.
BUT IT'S JUST TO GIVE YOU A
COPY, GIVE TO NIH, TO THE
SPONSOR, THAT HAS
DE-IDENTIFIABLE DATA, IF THE
DATA IS .
>> IT'S ROW LATED TO RELF
ACCESSIBLE DATA.
>> SOMETIMES THIS COMES UP A LOT
WHEN I TALK ABOUT THIS.
WE TALK ABOUT FAIR, FINDABLE,
ACCESSIBLE, BUT THERE'S A HUGE
GAP BETWEEN FAIR AND OPEN ACCESS
DATA.
AND I'M NOT SAYING THIS IS RIGHT
OR WRONG, IT'S A MIDDLE GROUND,
I KNOW THERE'S A LOT OF MIDDLE
GROUND HERE, BUT WE DID -- DATA
RE-USERS, BUT OPENLY -- IT'S
STILL ANOTHER LEVEL BEYOND FAIR.
SO I THINK THAT REASSURES SOME
DATA CREATORS.
FOR EXAMPLE, DATA IN DB GAP
ISN'T OPENLY AVAILABLE.
ONE HAS TO BE A VETTED SIGN
FIST.
SCIENTIST.
SOME ALLOW COMMERCIAL USE, SOME
DON'T.
SOME BELIEVE IN
DEIDENTIFICATION, SOME
INSTITUTIONS DON'T EVER BELIEVE
IN DEIDENTIFICATION.
DEPENDING ON WHO'S ON THE OTHER
SIDE TRYING TO REIDENTIFY.
SO IT IS A COMPLICATED GROUND, I
ABSOLUTELY GET THAT.
BUT I THINK IN SOME WAYS THIS IS
A SMALL FIRST STEP TO REQUIRE AN
EXTRA COUPLE PAGES IN A
DOCUMENT, IN A PROPOSAL, TO SAY
WHAT ONE IS COMMITTING TO.
I THINK IF THE COMMUNITY CAN
HOLD THOSE GRANTEES TO THAT
COMMITMENT, THAT'S AN AMAZING
NEXT STEP.
>> I WILL DOTE ON YOUR COMMENT
AND SHAMELESSLY PROMOTE THAT WE
ACTUALLY HAVE BEEN THINKING A
LOT ABOUT THIS ISSUE, NOT
SURPRISINGLY.
THE PLAL -- ALL DATA ARE
MANAGED, WHICH OF THOSE MANAGED
DATA WILL BE SHARED, AND WE
ACTUALLY HAD AN ACTIVE REQUEST
FOR INFORMATION ON THE STREETS
RIGHT NOW ABOUT HOW DO YOU
PROTECT PRIVACY, HOW DO YOU
THINK ABOUT DATA OPENLY
ACCESSIBLE VERSUS DATA
ACCESSIBLE WITH APPROPRIATE
CONTROLS AND PRIVACY
CONSIDERATIONS.
SO I ENCOURAGE EVERYONE TO TAKE
A LOOK AT THAT AND I PUT THAT IN
THE CHAT TO SHARE THAT BROADLY,
BECAUSE WE COULD DEFINITELY USE
YOUR INPUT THERE.
>> DAVID, I KNOW YOU RAISED
SEVERAL ISSUES YOU WANTED TO
ADDRESS IN THE CHAT.
SO YOU AND THEN WE'LL GO TO
WAAFA, AND SHELLEY.
>> THANK YOU, IT TERRIFIC TO SEE
THIS MOVING FORWARD.
IT'S A LITTLE M BITTERSWEET FOR
ME LAST TIME ON THE ACD AS WE'RE
GETTING INTO THESE THINGS, I'M
DILATED, THOUGH, TO SEE DINA AND
THE TOOL, MAKING SURE THERE
WON'T BE ANY SILENCE ON FUTURE
CONVERSATIONS ABOUT DATA, WHICH
IS TERRIFIC.
I RAISED A FEW THINGS IN THE
CHAT BUT I THINK THE FIRST ONE
IS THE MOST IMPORTANT ONE AND
INTERWEAVES TO WHAT WE'RE
TALKING ABOUT, THIS DIFFERENCE
BETWEEN SHARING AND SHARED USE,
BETWEEN SHARING AND ACTUALLY
SOMETHING THAT MATTERS.
AND DINA POINTED OUT MANY OF THE
WAYS THAT YOU CAN CHECK THE BOX
OF SHARING WITHOUT ACTUALLY
SOLVING ANY OF THE GOALS.
I WANT TO DOUBLE DOWN ON THE
CONCERN, POINT TO A FEW THINGS I
HEARD THAT I THOUGHT WERE GREAT
MOVES IN THE RIGHT DIRECTION,
BUT MORE -- I THINK MORE NEEDS
TO BE DONE.
BECAUSE I AGREE WITH DINAH, THIS
IS NOT -- WE'RE NOT DEALING WITH
THE NEUTRAL IS, O I DON'T KNOW
IF I SHOULD SHARE OR I SHOULD
NOT.
THERE ARE ANTI-SHARING FORCES,
STRUCTURAL FORCES.
SO IT'S NOT LIKE A LITTLE NUDGE
IS SUFFICIENT.
AND THE CAUTIONARY TALE IS I
LOOK AT THE OVER A DECADE POLICY
OF REGULATIONS, STICKS AND
CARROTS AROUND SHARING EHR DATA
AND THE EVOLUTION FROM
MEANINGFUL USE TO PROMOTING
INTEROPERABILITY AND THE MANY
STORIES YOU CAN SEE AS
INDIVIDUAL PATIENTS WHO JUST
WANT TO EXERCISE THEIR
HIPAA-MANDATED RIGHTS TO SEE
THEIR MEDICAL RORLDZ, RECORD
BASICALLY FAIL.
IT IS SLOWLY GETTING BETTER, BUT
I THINK WE CAN LEARN FROM THAT
DECADE-PLUS OF WHAT'S THE
DIFFERENCE BETWEEN CREATING
CHECK BOXES WHERE -- THAT SPAWN
BOX CHECKERS, WHO ARE WELL PAID
BOX CHECKERS, VERSUS GETTING TO
THE ACTUAL END GOALS.
AND I SAW MENTIONS OF IT.
I THINK IT CAN'T BE SAID ENOUGH.
BECAUSE WE WILL GENERATE A BUNCH
OF BOX CHECKERS.
YOU WILL SUCCEED AT THAT.
THAT'S NOT SUCCESS.
OKAY.
SO NOW LET ME POINT TO A FEW
SPECIFICS.
ALL THE THINKING ON INCENTIVES
WAS GREAT.
I THOUGHT, SUSAN, YOUR COMMENTS
ON THE GENERAL LIST REPOSITORY
ECOSYSTEM AND SOME OF THE GOALS
OF THAT, THAT'S MOVING IN THE
RIGHT M DIRECTION.
I DIRECTION.
I DON'T KNOW ENOUGH ABOUT THE
DETAILS BUT -- I HAVE A LINK NOW
TO READ ABOUT THE DATA WORKS
PRIZE DIRECTIONALLY, THAT'S
GREAT.
I THINK SHARING.NIH.GOV COULD
ALSO BE USED AS A BULLY PULPIT
AND START TO CREATE A CARROT OF
HERE'S AN EXAMPLE OF SOMEONE WHO
NOT JUST CHECKED THE BOX BUT WHO
DID SOMETHING VALUABLE AS A
RESULT OF HAVING SOMEONE CHECK
THE BOX, DEFINING HER ALGORITHM
BECAUSE SHE HAD ACCESS TO A
TOOLS DATA, WHATEVER IT IS.
I THINK HIGHLIGHTING AND
PROMOTING THOSE ARE ESSENTIAL.
I THINK, YOU KNOW, THERE'S A
PATTERN THAT I THINK WE COULD
EXPLICITLY PUSH, WHICH IS VERY
SIMILAR TO HOW ONE OF THE THINGS
ART STUDENTS DO IS THEY COPY THE
MASTERPIECE, RIGHT?
YOU GO TO THE MUSEUM WITH A
SKETCH BOOK AND YOU JUST COPY
AND SAY HOW DID THEY DO THAT?
WE COULD CREATE -- THIS IS A
VERY LARGE "WE," PROGRAMS THAT
FUND -- STUDENTS OR EARLY STAGE
RESEARCHERS TO PRODUCE RESULTS
AND SAY TAKE THE PUBLISHED
RESULTS, THE PUBLISHED METHODS
AND THE SHARED DATA, AND
GENERATE FIGURES ONE, TWO AND
THREE.
AND SHOW ME YOU COULD DO THAT.
AND I THINK THAT WOULD HAVE
BENEFITS ALL THROUGHOUT,
INCLUDING CONFIRMING THAT THIS
IS ACTUALLY MEANINGFUL SHARING,
THIS IS ACTUALLY USABLE SHARING.
AND THEN THE COMMENT THAT WAS
JUST -- I THINK -- I GORE GET
SUSAN IF IT WAS YOU OR LYRIC WHO
MADE THE COMMENT, DIDN'T GO ALL
THE WAY TO FAIR.
THAT MADE ME VERY NERVOUS.
BECAUSE IF DATA IS SHARED BUT
IT'S NOT FINDABLE, ACCESSIBLE
AND REUSABLE, I DON'T KNOW IF
WE'VE SUCCEEDED.
AND IF FIVE YEARS FROM NOW WE
HAVE AN ACD CONVERSATION ABOUT
HEY WE WANT TO DISCUSS THE
LIMITATIONS OF THE DATA SHARING
POLICY, PUT IT IN A WORKING
GROUP AND 15 YEARS FROM NOW WE
INSTITUTE A FAIR POLICY THAT
FIVE YEARS AFTERWARDS GETS
IMPLEMENTED, WE'D ALL GET READY
SAND.
THERE'S A LOT OF INERTIA IN THE
TRENCHES.
ALL OF THIS IS A WONDERFUL STEP
IN THE RIGHT DIRECTION BUT I'D
BE VERY CAREFUL THAT IT'S A STEP
THAT GETS US A LITTLE HIGHER ON
THE WRONG SIDE OF THE HILL AND
DOESN'T GET US OVER THE HILL.
I'M GOING TO STOP THERE AND
YIELD TO OTHER PEOPLE.
I HAVE A FEW OTHER QUESTIONS
THAT ARE NOWHERE NEAR AS
FUNDAMENTAL AS THIS QUESTION.
IF WE -- THIS ONE IS CENTRAL TO
THE WHOLE POINT OF THIS REALLY
REALLY --
>> SUSAN, DID YOU WANT TO WEIGH
IN BEFORE WE SHIFT TO THE NEXT
QUESTION?
>> I WANT TO SAY -- I THINK YOUR
POINTS ARE ABSOLUTELY SPOT-ON.
I'LL MENTION, I JUST PUT IN THE
CHAT JUST ONE EXAMPLE, AND IT'S
NOT MEANT TO BE THE ONLY ONE BUT
AN EXAMPLE OF SOMEONE AT NIH WHO
ACTUALLY LOOKED AT SHARED DATA,
NIH SHARED DATA.
THESE WERE CLINICAL TRIALS IN
EPIDEMIOLOGY STUDIES FUNDED BY
ONE OF THE ICs, AND LOOKED TO
SEE WHAT ACTUALLY HAPPENED.
WHAT THEY FOUND WAS THERE WERE A
SUBSTANTIAL NUMB WE ARE NS
WHERE DATA WAS SHARED AND I WAS
ONE OF THE JUNIOR INVESTIGATORS
WHO USED SOME OF THAT DATA, AND
DAVID, I DID EXACTLY WHAT YOU
SAID.
WHEN I FIRST GOT THE DATA, I
WENT THROUGH THE GUIDANCE AND A
THE INSTRUCTIONS AND SO THE
FIRST THING I TRIED TO DO WAS TO
SEE IF I COULD REPRODUCE THE
PAPER.
AND PARTLY, THAT WAS A GREAT
LEARNING EXERCISE, YOU'RE
ABSOLUTELY RIGHT, BUT PARTLY
ALSO TO MAKE SURE THAT I
ACTUALLY UNDERSTOOD WHAT I WAS
LOOKING AT.
AND THEN THAT, THEN, WOULD THEN
GUIDE FUTURE WORK THAT WOULD
FOLLOW FROM THEM.
I THINK YOUR POINTS ARE
ABSOLUTELY SPOT-ON.
>> AND I WOULD SECOND THAT.
I MEAN, WE STRUGGLE SO MUCH IN
POLICY DEVELOPING METRICS FOR
POLICY OUTCOMES THAT ARE
MEANINGFUL.
I MEAN, AGAIN, THE NUMBER OF
DATASETS SHARED, THE NUMBER OF
DATASETS USED TELLS US NOTHING.
IT COULD BE I ACCESS A DATASET
100 TIMES BECAUSE I COULDN'T GET
IT DOWN LOATED.
SO MAKING SURE WE'RE CREATING A
MEANINGFUL CHANGE IN THE SHARING
AND USE OF DATA IS REALLY THE
END GOAL.
AND I AGREE WITH YOU, CREATING
ADDITIONAL BURDEN FOR
RESEARCHERS TO CHECK A BOX THAT
DOESN'T CREATE VALUE IS A WASTE
OF TIME SO THIS IS DEFINITELY
SOMETHING WE'RE LOOKING AT IN
EVALUATING THE POLICY AND ANY
TWEAKS MOVING FORWARD, GETTING
OVER THE MOUNTAIN AS YOU
MENTIONED INSTEAD OF ONLY ON THE
RIGHT SIDE OF IT.
>> THANKS.
>> JUST TO REAFFIRM, THANK YOU
FOR ALL YOUR COMMENTS.
DO FOLLOW US ON THE DATA WORKS
PRIZE AND CONNECT ON THE GENERAL
LIST REPOS TRIF -- AS THIS MOVES
FORWARD, WE'D LOVE TO MAKE SURE
THIS IS FEEDING THE NEEDS OF
SHARING DATA AND MAKING DATA
RE-USEABLE.
>> THANKS, ALL.
>> SO WE'LL GO ONL TO WAAFA.
>> THANK YOU VERY MUCH, AND IT'S
REALLY GREAT TO SEE THIS WORK
MOVING ALONG.
I DID CLICK ON THE WEBSITE, ON
THE LINK THAT YOU SENT AND WENT
TO THE CLINICAL TRIAL SECTION.
AND THERE, IT REALLY TALKED MORE
ABOUT REGISTERING THE CLINICAL
TRIALS AND THEN REPORTING THE
RESULTS OF THE CLINICAL TRIALS.
IT DIDN'T GET INTO THE WHOLE
AREA OF DATA SHARING.
THIS IS -- INVOLVED IN CLINICAL
TRIALS IS SOMETHING WE TALK K
ABOUT ALL THE TIME, ABOUT THE
ISSUE OF DATA SHARING, AND IT
REMAINS AMBIGUOUS, I HAVE TO
SAY, IN TERMS OF PEOPLE ARE NOT
CLEAR.
IS THERE A TIME FRAME, FOR FOR
EXAMPLE, FROM THE END OF A
CLINICAL TRIAL AND BY WHEN YOU
SHOULD SHARE THE THE DATA?
IS IT LINKED TO THE END OF THE
TRIAL,.
THERE ARE ALL THESE DETAILS THAT
REMAIN, AT LEAST I DON'T KNOW
THEM AND I CAN'T FIND THE ANSWER
TO THEM, THEY REMAIN AMBIGUOUS.
I THINK BECAUSE -- IT I
UNDERSTAND ENDS UP
THAT WE DON'T SEE AS MUCH OF THE
SHARING OF DATA AS I THINK WE
ALL WOULD LIKE TO SEE.
SO I GUESS I'M -- FOR MORE
CLEARLY DEFINED TIME FRAMES TO
GUIDE PEOPLE WHO ARE ENGAGED IN
THIS KIND OF WORK IN TERMS OF
THE WHOLE ICIAL EU OF DATA
SHARING.
THANK YOU.
>> THANK YOU.
THAT'S GREAT FEEDBACK, AND I
THINK ONE OF THE THINGS WE NEED
TO CLARIFY IS THAT THAT CLINICAL
TRIALS TAB DEALS WITH THE
REGISTRATION REPORTING POLICY.
THE DATA SHARING POLICY, OF
COURSE, APPLIES TO ALL STUDIES
INCLUDING CLINICAL TRIALS, SO
FOR EXAMPLE, A REASONABLE DATA
MANAGEMENT AND SHARING PLAN
DESCRIBES HOW DATA WILL BE
SHARED AT THE TIME THE PRIMARY
RESULT ARE FIRST MADE KNOWN, AT
THE TIME THEY'RE PUBLISHED OR
THE TIME THEY APPEAR IN
CLINICALTRIALS.GOV AND THAT
WOULD BE THE KIND OF THING WE
EXPECT TO BE DRESSED.
SOME OF THE ICs ALREADY
HAVE -- THAT PAPER THAT I GAVE
YOU IS FROM ONE IC THAT HAS BEEN
DOING THIS AS A MATTER OF
ROUTINE FOR A LONG TIME.
SOME OF THE PROGRAMS ACTUALLY DO
REQUIRE DATA SHARING.
I'M THINKING, FOR EXAMPLE, THE
CANCER MOONSHOT PROGRAMS, DO
REQUIRE DATA SHARING.
BUT THANKS VERY MUCH FOR
BRINGING IT UP, AND WE'LL
CLARIFY TO MAKE THAT REALLY
CLEAR WHAT WE'RE TALKING ABOUT
THOSE DIFFERENT TASKS.
>> SHELLEY?
>> THANKS.
THIS IS A REALLY INTERESTING
DISCUSSION.
I'D LIKE TO BRING UP THE COSTS
OF THIS.
I'M ACTUALLY ON A COMMITTEE AT
MY INSTITUTION, TRYING TO
EVALUATE COSTS OF DATA STORAGE,
DATA SHARING, ALL OF THE
COMPUTATION.
AND THE ISSUES ARE BOTH AT THE
LOW LEVEL, LIKE BASIC
RESEARCHERS, R01, LET'S SAY,
MEDIUM AND VERY, VERY LARGE.
IT KIND OF SPANS ALL LEVELS OF
PEOPLE REALLY WORRYING ABOUT THE
COST.
SO I'M JUST WONDERING AS THESE
POLICIES COME INTO PLAY, YOU DID
MENTION WE'D BE ABLE TO BUILD IT
INTO THE BUDGET, BUT THE BUDGET
OF A LOT OF GRANTS DON'T REALLY
GO UP MUCH YEAR TO YEAR, SO I'M
WONDERING, HOW ARE YOU ACTUALLY
THINKING ABOUT THIS?
AND THE COSTS?
I'M A LITTLE PUZZLED, I MUST
SAY, AT THIS POINT.
>> I'LL START.
SO A FEW THOUGHT ON THIS.
ONE IS THAT A LOT OF THOUGHT HAS
GONE INTO THIS, AND OBVIOUSLY A
LOT MORE WILL BE NEEDED,
ESPECIALLY AS WE GAIN MORE
EXPERIENCE.
NLM COMMISSIONED A STUDY WITH
THE NATIONAL ACADEMIES ON HOW DO
WE THINK ABOUT COST, WHAT'S THE
FRAMEWORK FOR COSTS, BOTH SHORT
TERM, INTERMEDIATE AND LONG
TERM, AND THEY PUT TOGETHER A
REALLY TERRIFIC REPORT AND
THAT'S SOMETHING WE CAN DISCUSS.
AND WE CAN GIVE YOU THE LINK TO
THAT.
ANOTHER THING IS THAT WE DO
PROVIDE GUIDANCE ON WHAT ARE
REASONABLE COSTS AND WHAT SHOULD
BE INCORPORATED.
I KNOW THAT THERE HAVE BEEN SOME
GROUPS THAT HAVE ACTUALLY PUT
TOGETHER COST MODELS, WHAT WOULD
BE THE APPROPRIATE COST FOR
CURATING, MANAGING AND SHARING
DATA FOR CERTAIN SPECIFIC
FIELDS.
I WOULD IMAGINE AS WE PUT
TOGETHER OUR SAMPLE DATA SHARING
PLANS, WE MIGHT INCORPORATE SOME
OF THAT TO HELP PROVIDE
BENCHMARKS TO THE COMMUNITY.
ONE OF THE REASONS WHY WE WANT
TO HAVE SOMETHING EXCLUSIVELY
PUT INTO THE BUDGET APPLICATION
IS WE WANT SCIENTISTS AS WELL AS
GRANTS ADMINISTRATORS AND GRANTS
STAFF LOOKING AT THIS FROM THE
VERY BEGINNING.
AND REALIZING THAT THIS HAS TO
BE PLANNED OUT FROM THE GET-GO,
AS LYRIC HAD SAID.
>> CAN I ADD ONE THING REGARDING
THIS?
SO I MEAN, HOSPITALS AND
CLINICAL INSTITUTIONS ARE NOT --
LIKE IT'S DIFFICULT FOR THEM AND
MOST OF THEM, NOT EVERY ONE, BUT
MOST OF THEM ARE NOT EQUIPPED TO
KEEP THE DATA AND KEEP IT
AVAILABLE FOR THE PUBLIC AND ALL
OF THAT STUFF.
IT MIGHT BE MUCH EASIER AND YOU
CAN ACHIEVE THE GOAL IN A MUCH
MORE CONCRETE WAY IF ACTUALLY
YOU HAVE A TEAM AT THE NIH THAT
THE REQUIREMENT IS BASICALLY
WHATEVER DATA THAT'S GENERATED
FROM THE GRANT IS PROVIDED TO
THE NIH TEAM AND THERE ARE A FEW
PEOPLE THERE, THAT THEY HAVE
SOME AGREEMENT WITH THE
INSTITUTION, AND THEY TAKE CARE
OF RECORDS BEING MAINTAINED AND
STRUCTURE BY THE NIH?
>> DINA, TOTALLY AGREE.
SOME OF OUR ICs HAVE SET UP
REPOSITORIES.
IN SOME CASES, RESEARCHERS HAVE
NO CHOICE.
THEY HAVE TO USE THE NIH
REPOSITORIES FOR THEIR PROJECTS.
THE EXAMPLE THAT I GAVE OF DATA
SHARING USE FROM ONE OF THE
ICs WAS ACTUALLY EXACTLY THAT.
IT'S A CONTRACT THAT THE IC HAS
WITH A DATA REPOSITORY, AND SO
THAT CONTRACTOR THEN IS
RESPONSIBLE FOR MAINTAINING THE
DATA PROPERLY, ASSURING SECURITY
AND SO FORTH.
>> YOU'VE ALSO BEEN TALKING WITH
OSB AND OER WITH THE DATA
STEWARDS PROGRAM THAT MIGHT
ASSIST THEM.
THERE ARE SIMILAR PROGRAMS, FOR
EXAMPLE, ON THE HEEL INITIATIVE
WHERE THERE IS A DATA STEWARDS
PROGRAM TO HELP INVESTIGATORS
UNDERSTAND HOW TO SHARE THEIR
DATA IN A FAIR DATA REPOSITORY
INCLUDING CLINICAL DATA.
SO THIS IS A POSSIBILITY AS WELL
THAT I THINK WOULD BE VALUABLE
FOR THE COMMUNITY.
>> HOWARD, YOU'RE NEXT.
YOU WERE IN THE CHAT.
AND THEN WE'LL GO TO ROBERTA.
SOME OF THESE HAVE BEEN FLOATING
AROUND IN THE CHAT SO WE'LL SEE
IF THEY FALL OFF.
>> SURE.
THANK YOU.
SO FIRST OF ALL, YEAH, THIS IS
SUCH IMPORTANT WORK, SO I'M
REALLY GLAD TO SEE THE PROGRESS.
I WAS GOING TO BRING UP
SOMETHING THAT'S ALIGNED WITH
WHAT WAAFA WAS SAYING ABOUT
STANDARDS AND WHAT'S EXPECTED.
I THINK SOME FIELDS HAVE VERY
STRONG STANDARDS, THE GENOMICS
COMMUNITY EXPECTS, ALL THE RAW
DATA WOULD BE DEPOSITED,
AVAILABLE, UPON PUBLICATION.
SO THIS HAD A VERY POSITIVE
IMPACT ON DATA SHARING BUT IN
OTHER FIELDS THAT'S NOT THE
CASE.
IT DOESN'T WORK FOR IMMUNOLOGY,
HE CAN TALK ABOUT HIS EXPERIENCE
BUT I FEEL LIKE THERE'S AN
OPPORTUNITY FOR NIH TO SAY NOT
ONLY IS THERE THIS FIGURE, THIS
BLOT, YOU HAVE TO SAY A LOT MORE
ABOUT HOW THAT WAS DONE, RIGHT,
TO ACTUALLY MAKE USE OF THE FULL
DATA.
SO SETTING THE STANDARDS.
>> I CAN TAKE THE FIRST
COMPONENT OF THAT.
WE RECOGNIZE THAT, AND THIS IS
AGAIN RECOGNIZING A RELATIVELY
SHORT POLICY IN COMPARISON TO
SOME OF OUR OTHER POLICIES IN
THE OFFICE, GIVING THAT
FLEXIBILITY TO INVESTIGATORS TO
TALK ABOUT, BUT IN THE PLAN
ELEMENTS, WE SPECIFICALLY
ACKNOWLEDGE THAT SCIENTIFIC
FIELDS HAVE DEVELOPED AND
ADAPTED COMMON DATA STANDARDS
AND SOME HAVEN'T.
SO WE REQUEST THAT THE PLAN
CONSIDER INDICATING THAT EITHER
NO CONSENSUS DATA STANDARDS HAVE
BEEN ACHIEVED, OR TO WHAT
STANDARDS WE ARE ACTUALLY
MEETING.
SO WHETHER OR NOT YOU'RE USING
DATA DICTIONARY, UNIQUE
IDENTIFIERS, ET CETERA, SO
RECOGNIZING THERE'S A DIVERSITY
AND DESCRIBING THAT IN THE
PLANS, AT LEAST, RECOGNIZING WHO
HAS STANDARDS AND WHO DOESN'T
AND KIND OF HOW YOU'RE MAKING
YOUR DECISIONS.
>> I JUST WANT TO CALL OUT THIS
IS BEEN AN ACTIVE DISCUSSION
WITHIN NIH AND WITHIN NLM AND
THEY RECENTLY HELD THIS PAST
MARCH A CURATION OF SCALE
WORKSHOP AND THESE TOPICS OF
CURATION STANDARDS, AND WAYS TO
REALLY THINK ABOUT THIS AT SCALE
WERE DISCUSSED, I BELIEVE THAT
THERE WILL BE A WORKSHOP REPORT
SHORTLY, BUT THIS IS SOMETHING
WE ARE THINKING ABOUT, HOWARD,
SO THANK YOU.
>> GREAT, THANK YOU.
>> ROBERTA?
>> YES.
AGAIN, PHENOMENAL WORK AND SO
APPRECIATE ALL OF THE FOCUS ON
DATA SHARING.
I WOULD BE REMISS NOT TO MENTION
THE NATIONAL INSTITUTE ON
AGING'S SITE, THE ACCELERATED
MEDICINE PARTNERSHIP FOR
ALZHEIMER'S DISEASE CONTRACTED
WITH SAGE BIONETWORKS WHERE THEY
HAVE THE SYNAPSE PORTAL, AND
WITH CURATED DATA THAT'S
AVAILABLE.
NOW THEIR STRATEGY HAS BEEN TO
TAKE EXISTING DATA FROM, FOR
EXAMPLE, THE RELIGIOUS ORDER
STUDIES AND MEMORY STUDIES, AND
HAVE BACKTRACKED OVER DECADES TO
ACTUALLY MAKE THOSE DATA
ACCESSIBLE, AS WELL AS THE NEW
OMIC DATA THAT IS BEING
GENERATED THROUGH THE NIA
FUNDING OF THIS ENDEAVOR.
WILL SO I THINK IT'S A E
OF A DATA SHARING STRATEGY THAT
COULD SERVE AS A TEMPLATE FOR
KIND OF THE BASIC SCIENCES IN A
PARTICULAR FIELD, AND PROGRAMS
GOING BROAD ALL DATA ALL THE
TIME REALLY COULD PERHAPS BE
BETTER ACHIEVED WHEN WE'RE MORE
FOCUSED AROUND A SPECIFIC
INSTITUTE, AND THEN WE GO TO
G.O. AS WELL, SO WHEN THOSE
DATASETS ARE AVAILABLE, THEN THE
ENTIRE COMMUNITY CAN HAVE
ACCESS.
SO I'M ONLY REITERATING A GOOD
EXAMPLE OF WHAT MICHAEL AND DINA
HAVE ALREADY BROUGHT UP AS AN
EXAMPLE OF HOW THIS MIGHT BE
ACHIEVED.
>> JUST TO AFFIRM WHAT YOU'RE
SAYING, THE KNOWLEDGE PORTAL
FROM SYNAPSE IS EXCELLENT AND I
THINK THAT OTHER AMP PROGRAMS
ARE LOOKING AT LEVERAGING THAT
SO THAT'S A POSSIBILITY THAT
THAT MIGHT SEE A LARGER
MULTIPLIER EFFECT AND
POTENTIALLY BE --
>> BARBARA, YOU HAD A COMMENT IN
THE CHAT THAT I DON'T KNOW IF
YOU STILL HAD THAT QUESTION OR
THAT HAD BEEN RESOLVED.
>> I DO HAVE A QUESTION, AND
JUST REFER TO THE COMMENT FOR
THE FUTURE.
SO FOR THE FUTURE, IT LOOKS LIKE
A TOPIC THAT WE MIGHT HEAR ABOUT
IS THE ENTIRE PROBLEM
SURROUNDING IDENTIFIABILITY AND
REIDENTIFIABILITY AND THE FACT
THAT THE TECHNOLOGY FOR THAT IS
CONSTANTLY CHANGING.
AND SO THAT'S RELATED TO THE USE
OF SHARED DATA AND THE METADATA
THAT GOES WITH IT, BUT WE'LL PUT
THAT ON THE SHELF FOR NOW.
THE SECOND QUESTION THAT I HAD
SURROUNDS THE OVERALL ISSUE OF
THE DYNAMICS WITH RESPECT TO AN
INDIVIDUAL PROJECT.
SO ON THE GROUND THINKING ABOUT
THE SMALLER AND MORE MEDIUM
SCALE PROJECTS, NOT BIG CLINICAL
TRIALS, NOT LARGE GENOMICS
PROJECTS WHERE THERE'S A GOOD
HANDLE ON THE DATA TYPE AND THE
AMOUNT THAT'S GOING TO BE
GENERATED.
BUT IN THESE OTHER VENUES,
TECHNOLOGY CHANGES, PEOPLE DRAW
IN A NEW TECHNOLOGY AND THEY MAY
GO FROM A LOW RESOURCE REQUIRING
SETTING TO SOMETHING WHERE THEY
ACTUALLY REQUIRE A LOT, IF THEY
SUDDENLY ARE ADDING A LOT OF
IMAGING THAT WAS A MINOR PART OR
NO PART OF THE PLAN AT THE
BEGINNING, THAT'S GOING TO
CHANGE THEIR EXPERIENCE.
SO IS THERE A PROVISION DURING
THE COURSE OF A GRANT, SOMEBODY
THINKING ABOUT A PROVISION FOR
ACTUALLY ALTERING SUPPORT OF
DATA RESOURCES, THAT PART WHICH
IS IN DIRECT COSTS, FOR EXAMPLE.
IT A SMALL THING, BUT MANY
PEOPLE WILL BE AFFECTED.
>> IT'S NOT A SMALL THING,
ABSOLUTELY.
THE NATURE OF SCIENCE IS
UNPREDICTABLE.
YOU WRITE A PLAN IN THE
BEGINNING AND YOU'RE UNSURE
SOMETIMES WHERE THE SCIENCE WILL
TAKE YOU AND THE PROMISINGS
AVENUES AND IT SHOULDN'T BE
LIMIT TODAY A PLAN ABOUT DATA
SHARING THREE YEARSING A.
SO WE HAVE BUILT IN THE ABILITY
TO REVISE PLANS WITH THE IC'S
APPROVAL, SO THAT IS DEFINITELY
SOMETHING THAT CAN BE
ACCOMMODATED.
>> AND I HOPE SOME LOOK AT
FUNDING OF IT.
THE COST FOR NEW DATA RARELY IS
LESS.
>> DID YOU HAVE ANOTHER COMMENT
OR QUESTION YOU WANTED TO RAISE?
>> NO.
>> SWITCHING TO ATUL, DID YOU
HAVE ANOTHER COMMENT OR
QUESTION?
I THOUGHT I SAW ONE IN THE CHAT.
>> A COUPLE MINOR THINGS IN THE
CHAT.
ONE THING THAT HASN'T BEEN
BROUGHT UP IS, I APPLAUD NIH IN
FUNDING DATA RE-USERS, RIGHT?
SO SECONDARY USE OF THESE BIG
EXPENSIVE REFERENCE DATASETS
LIKE N CODE, PCG AND ALL THE
REST, AND CAN WE GET MORE OF
THOSE, IT'S -- SPECIFIC RIGHT
NOW.
IT GREAT TO GIVE OUT A PRIZE,
$500,000 PRIZE, BUT THERE ARE
THINGS IN BETWEEN TO FIND A
SPECIFIC SECONDARY USE FOR
LARGER REPOSITORIES.
I'VE PUT A COUPLE EXAMPLES IN
THE CHAT, BUT IT WOULD BE GREAT
TO SEE THAT MORE -- AGAIN, TO
ENCOURAGE USERS OF THESE KINDS
OF DATASETS TO FIND NEW
DISCOVERIES.
SO THAT'S NOT REALLY A QUESTION,
JUST A POINT, BUT IT WOULD BE
GREAT TO SEE THOSE.
VERY TWO EXTREMELY MINOR THINGS.
IT MIGHT MAKE SENSE SINCE WE'RE
ALL GOING TO BE DEPENDING ON
INSTITUTIONS TO START DOING THIS
WORK WITH US AS, LET'S SAY, DATA
CREATORS, TO START TO DOCUMENT
SOME CH THIS STUFF, EVEN
FACILITIES AND EQUIPMENT.
WHAT ARE THE RESOURCES ON OUR
CAMPUSES TO SPECIFICALLY
FACILITATE DATA SHARING?
AND THEN A FINAL QUESTION IS,
ONE SLIDE SHOWED -- MAYBE I'M
READING IT WRONG -- THAT DOLLARS
TOWARDS DATA SHARING WOULD NOT
FALL UNDER INDIRECT COSTS.
SO I WAS REAL PUZZLED BY THAT.
THIS WOULD BE LIKE MODIFIED
TOTAL DIRECT COSTS OR MAYBE I'M
MISREADING THAT SLIDE, BUT THE
DLRS -- OVERHEAD WOULD BE USED,
INFRASTRUCTURE WOULD BE USED FOR
DATA SHARING TOO, RIGHT?
OR MAYBE I'M MISREADING THAT
SLIDE.
>> SO THERE ARE, IN THE POLICY
THAT WAS ISSUED BACK IN 2020, WE
DO GO INTO THAT IN A BIT MORE
DETAIL AND ALSO ON THE WEBSITE,
BUT THE GENERAL PRINCIPLE IS
THAT IF IT SOMETHING WHICH IS
SPECIFICALLY NEEDED FOR THIS
PROJECT, THAT IS A LEGITIMATE
DIRECT COST.
IF IT'S SOMETHING WHICH IS MORE
GENERAL BUT NOT SPECIFIC FOR
THIS PROJECT, THAT IS AN
INDIRECT COST.
SO LET'S SAY THAT YOU NEED A
SPECIAL COMPUTER, AND THAT
COMPUTER IS SPECIFICALLY NEEDED
TO ACCOMPLISH THIS PROJECT, THAT
WOULD BE A LEGITIMATE DIRECT
COST.
BUT ON THE OTHER HAND, THE
GENERAL COMPUTER INFRASTRUCTURE
YOU HAVE TO MANAGE YOUR OVERALL
PROGRAM, THAT WOULD GL INTO
INDIRECT COSTS.
THAT'S AT A VERY HIGH LEVEL.
>> PERFECT.
THANKS.
>> WE CAN CERTAINLY WORK ON, ON
A CASE-BY-CASE BASIS, TO MAKE
SURE THAT COSTS ARE ALLOWED.
>> GREAT, THANKS.
>> WENDY AND THEN DAVID.
>> IT BEEN ADDRESSED IN THE
CHAT.
>> OKAY, GREAT.
DAVID?
>> GOOD TIMING BECAUSE I'M
FOLLOWING UP DIRECTLY ON THE
TOOLS QUESTION, BUT THE FLIP
SIDE OF IT, AND I THINK THERE
HAVE BEEN GREAT STRIDES, PUN
INTENDED, OVER THE LAST FIVE-ISH
YEARS ON SUPPORTING AND
FACILITATING LOWERING BARRIERS
TO USE OF CLOUD INFRASTRUCTURE,
WHICH IS OFTEN VERY WELL SUITED
TO THE GOALS OF SHARING AND
SHARED USE.
I WANT TO CHECK ON WHETHER
PEOPLE THINK THAT ENOUGH HAS
BEEN DONE SPECIFICALLY IN THE
CONTEXT OF THIS DATA SHARING, TO
MAKE IT EASY FOR PEOPLE WHO WANT
TO INCLUDE THE CLOUD STYLE OF
COSTS AS PART OF THEIR SHARING
PLAN TO DO SO AND BE
COMFORTABLE, BUT THAT'S NOT
GOING TO PUT THEM AT A
DISADVANTAGE TO SOMEONE WHO JUST
SAYS, OH, IT'S COVERED IN THE
INDIRECT, DON'T WORRY ABOUT IT.
AND IT'S THE OP EX/CAPEX THING
THAT YOU'VE ALL THOUGHT ABOUT A
BUNCH, BUT GIVEN THESE MANDATE
AND GIVEN THAT WE'RE NOW ASKING
EVERYONE WHO PROPOSES A PLAN TO
THINK ABOUT HOW IT GOING TO BE
COVERED, AND IF USING THAT
EXISTING ON PREM GENERAL PURPOSE
USE DOESN'T CREATE A NEW LINE
ITEM, THEY'RE GOING TO FEEL LIKE
THEY'RE AT A DISADVANTAGE TO USE
WHAT MAY BE BERT ALIGNED IN SOME
CASES, MANY CASES, I BELIEVE,
WITH THE GOALS.
YOU GET THE QUESTION.
>> I THINK WHAT YOU'RE SAYING,
DAVID, IF I UNDERSTAND THIS
RIGHT, IS IF WE ACTUALLY GET
BETTER DATA SHARING, BETTER
COMPUTER USE BY DEPOSITING VERY
LARGE AMOUNTS OF DATA IN THE
CLOUD AS IN STRIDES, THAT'S
SOMETHING WE VERY MUCH WANT TO
ENCOURAGE.
WE DON'T WANT PEOPLE TO THINK
THAT WE WANT LOWER BUCKETS BY
DOING SOMETHING WHICH IS
SUBSTANDARD WHEN SOMETHING LIKE
STRIDES WOULD BE MORE
APPROPRIATE.
IS THAT RIGHT?
>> YES, THAT'S THE QUESTION.
>> AND THEN PART OF THE WHOLE
IDEA OF STRIDES IS THAT WE MAKE
THESE RESOURCES AVAILABLE AT A
DISCOUNT.
NOW IT'S TOUGH TO PAY FOR IT,
BUT AT A DISCOUNT COMPARED TO
WHAT YOU WOULD BE PAYING FOR IF
YOU WERE DOING IT ON AN
INDIVIDUAL LEVEL.
LET ME ASK MY COLLEAGUES TO
CHIME IN HERE.
SWR
>>
>> ABSOLUTELY, STRIDES IS A
GREAT OPPORTUNITY FOR MANAGING
AND STORING DATA, PARTICULARLY
LARGE DATA SITS, LIKE IMAGING
DATA, IT'S QUITE LARGE, SO THIS
IS A WONDERFUL OPPORTUNITY, WE
HAVE WELL OVER -- PETABYTES OF
DATA.
SO WORKING WITH CLOUD PLATFORMS,
MANY ARE SUPPORTED BY THE ICs,
IS A WONDERFUL SOURCE FOR
SHARING DATASETS, WHICH YOU'RE
GOING TO SEE A VERY HIGH VOLUME
OF RE-USE ON.
>> SUSAN, MAYBE YOU SHOULD PUT
THE LINK TO THE STRIDES PROGRAM
FOR OUR NEW COUNCILMEMBERS, THEY
MAY NOT BE AS FAMILIAR WITH IT
AS OTHERS ARE.
IT'S A PROGRAM EXTENDED TO THE
EXTRAMURAL COMMUNITY WHICH
ALLOWS YOU TO ACQUIRE VARIOUS
CLOUD SERVICES, AS WELL AS
TRAINING WHICH IS QUITE
CRITICAL, OF COURSE, EITHER FOR
FREE OR DISCOUNTED DPENTING UPOG
UPON WHAT THE ISSUE IS.
>> FOLLOWING UP, MICHAEL, ON
YOUR POINT -- IS GREAT BUT IT
STILL DOLLARS.
IT MAY BE CHEAPER THAN LIST
PRICE DOLLARS, BUT IF THEY
PERCEIVE THAT SAYING, OH, YEAH,
I'M JUST GOING TO USE THAT LOCAL
SYSTEM THAT MAY OR MAY NOT
ACTUALLY MEET THE SHARING NEEDS
AND THEN I WILL NOT HAVE TO DEAL
WITH ADDING THE LINE ITEM.
ANYTHING THAT WE CAN DO TO
ENCOURAGE USE OF THE BEST
SHARING AND SAY THE COST OF THE
BEST SHARING IS EXPECTED.
BECAUSE THERE'S COSTS EITHER
WAY, BUT COST AND CAPEX LOOK
DIFFERENT AND THERE ARE
BARRIERS.
>> THANK YOU.
GLL
>> THE ZERO SUM AGAINST THE
DIRECT -- IS REALLY GOING TO
AFFECT PEOPLE ON THE GROUND WHEN
THEY MAKE THEIR CLOIS.
SO IF ALL OF THOSE R01s OUT
THERE ARE ALL DOING THE
COMPUTATION AND THEY WILL BE
THAT DAVID HAS SUGGESTED, IT
WILL MAKE A BIG DIFFERENCE IF
SOMETHING IS DONE TO MAKE IT
CLEAR THAT THAT'S NOT GOING TO
BE A PENALIZED LINE ITEM.
>> SUSAN AND MIKE PUT SOME OF
THOSE THINGS IN THE CHAT.
DINA, YOU HAD A COMMENT IN THE
CHAT BUT YOU HAVE YOUR HAND UP
TOO, SO I'LL GO TO YOU AND THEN
SHELLEY.
>> I JUST WANT TO EMPHASIZE THAT
ALSO DATA IS VERY IMPORTANT
ABOUT WHO'S SHARING AND WHO'S
NOT SHARING.
SO SIMILAR, 20 INSTITUTION GETS
AMOUNT OF THE RESOURCES, I WILL
BE INTERESTED TO SEE WHAT ARE
THOSE 20 INSTITUTIONS, ARE THEY
CONTRIBUTING TO GENERATING DATA
FOR THE COMMUNITY, OR ACTUALLY
THE ONES THAT ARE GETTING THE
LEAST AMOUNT OF RESOURCES ARE
THE ONES WHICH ARE GENERATING
DATE TA FOR THE COMMUNITY.
AND HAVE THAT DATA AVAILABLE SO
THAT IT CAN BE CONSIDERED AS
NEW --
>> THAT'S A GREAT IDEA.
THANK YOU.
>> ALTHOUGH I HAVE TO PUSH BACK
A LITTLE BIT, DINA, IF YOU'RE AT
A RESOURCE-ENRICHED INSTITUTION,
YOU'RE MORE LIKELY GOING TO
GENERATE NEW DATA.
IT CAN'T BE A SELF-FULFILLING
PROPHECY.
I MEAN, I TAKE YOUR POINT, BUT
WE HAVE TO --
>> LARRY, MY CONCERN IS THE
OPPOSITE, THAT ACTUALLY THE BIG
INSTITUTIONS GENERATE THE DATA
BUT DON'T SHARE IT, AND --
>> YEAH, I -- FAIR POINT.
THANK YOU.
>> SHELLEY, WOULD YOU LIKE TO
ASK YOUR QUESTION?
>> MY POINT WAS JUST -- WE'VE
HAD A LOT OF GREAT LINKS TODAY
AND REFERENCES TO RESOURCES, ET
CETERA.
I WONDERED IF THIS COULD BE
BROUGHT TOGETHER AND SENT OUT TO
US.
IT WOULD BE REALLY HELPFUL.
>> WE'LL CAPTURE THAT OFF THE
CHAT BOX AND MAKE THAT
AVAILABLE.
>> WEN WENDY, I SEE YOU HAVE A
QUESTION AS WELL.
>> I GUESS IT IS KIND OF A
QUESTION.
THE NIH WILL HAVE SOME POWER,
ESPECIALLY WITH RESEARCHERS AT
ACADEMIC MEDICAL CENTERS, FOR
EXAMPLE, BUT PRESSURES FROM THE
HOSPITAL TO NOT SHARE DATA.
I'M NOT SURE THE NIH HAS THAT
MUCH INFLUENCE WITH THEM.
ARE THERE PARTNERS THAT CAN
BUILD ON WHAT THE NIH IS DOING
TO KIND OF INCREASE THE THE
INCENTIVIZATION/SUPPORT?
>> SOME OF THE JOURNALS ARE
GOING INTO THE BASIC SCIENCE
REALM.
DATA SHARING IS REQUIRED AND
THEY MAKE YOU FEEL LIKE -- THEY
MAKE IT VERY CLEAR HOW UNHAPPY
THEY ARE IF YOU'RE NOT WILLING
TO SHARE DATA.
BUT SOME OF THE CLINICAL
JOURNALS NOW ARE DEFINITELY
MOVING IN THAT DIRECTION.
SO I'LL DEALLY YOU'D HAVE THIS
PUSH AND PULL WHERE THE NIH IS
SAYING DATA HAVE TO BE SHARED
AND THE JOURNALS SAY YOU WANT TO
PUBLISH IN OUR JOURNAL, YOU'RE
GOING TO HAVE TO SHARE DATA.
LET'S SAY THAT WE HAVE A DATA
SHARING PLAN POSTED ON THE NIH
WEBSITE AND THERE'S A DATA
SHARING PLAN POSTED ON THE
JOURNAL WEBSITE AND THEN THE
RESEARCHERS REFUSE TO SHARE THE
DATA, THEN WE'VE GOT TWO PARTIES
THAT CAN POTENTIALLY HOLD PEOPLE
ACCOUNTABLE.
>> AS TO THINK BEYOND THE
RESEARCHERS, PER SE, BUT WE'RE
ALSO WORKING WITH, , FOR INSTAN,
INTERNATIONAL GOVERNMENTS, HOW
TO BUILD COLLABORATIONS IN
SHARING, WE'RE ALSO HAVING
PHILANTHROPIC ORGANIZATIONS.
AS MIKE MENTIONED, WE'VE BEEN IN
CONVERSATION WITH THE JOURNALS
AND OTHER BROADER COMMUNITIES TO
AGAIN HAVE THIS BROADER
ECOSYSTEM OF SEEING THE VALUE OF
IT AND REPRESENTING THE
EXPECTATION THAT PEOPLE EXPECT
IT, SO ESPECIALLY IN THE
NON-PROFIT SECTOR WORKING WITH
PATIENT GROUPS AND OTHERS WHO
ARE ASKING FOR THIS, IT PUTS
ADDITIONAL PRESSURE ON THOSE
LESS LIKELY TO SHARE TO KNOW
THAT THIS IS WHAT THEIR
PARTICIPANTS WANT.
>> WE STILL HAVE ABOUT 10
MINUTES LEFT, IF THERE ARE ANY
OTHER COMMENTS OR QUESTIONS,
FOLKS WANT TO TAKE ADVANTAGE OF
THIS TIME TO ASK OR TO MENTION.
>> MAYBE I'LL JUST MENTION WHAT
I PUT IN THE CHAT, SO M3C, THE
NATIONAL COVID CONSORTIUM
SOMETHING C CENTER, WHATEVER, IS
ACTUALLY A GREAT EXAMPLE.
I PUT THAT IN CHAT IN RESPONSE
TO WENDY'S POINT, WHERE REALLY I
GUESS YOU COULD SAY ALL-OF-US
RESEARCH IS REALLY ANOTHER
EXAMPLE OF DATA COMING TOGETHER,
BUT CERTAINLY -- AT LEAST
COMMITTED -- I KNOW MORE IS
BEING ASKED OF THEM AND US, BUT
IT IS AMAZING THAT HEALTH DATA
NOW DOES RESIDE AT AN NIH DATA
REPOSITORY WITH THE PORTAL THAT
RESEARCH COULD BE DONE, SO
ALL-OF-US IS ANOTHER GREAT
EXAMPLE.
SO HEALTH DATA IS ABLE TO BE
SHARED NOW.
IT IS KIND OF MIRACULOUS, WHAT'S
HAPPENED HERE.
>> THE NATIONAL COVID COHORT
COLLABORATION.
>> EXACTLY.
>> THAT'S WHY WE CALL IT N3C.
ALL RIGHT.
>> WE HAVE SOME TIME, I'LL JUST
ADD A LITTLE BIT, IT'S A
CONVERSATION WE'RE EXTREMELY
INTERESTED AROUND HEALTH DATA
AND OTHER DATA WE ARE COLLECTING
FROM PARTICIPANTS, FROM MOBILE
DEVICES AND MORE AND HAVING THAT
CONVERSATION, SO I'D MENTIONED
IN THE CHAT BUT I WILL USE IT
HERE.
THERE IS ANOTHER ADVISORY
COMMITTEE TO DR. TABAK AND NIH
THAT IS THINKING THROUGH SOME OF
THESE NEWER TECHNOLOGIES AND HOW
INFORMATION IS COLLECTED.
WHAT KIND OF RESEARCH QUESTIONS
WE CAN ANSWER USING THESE NEWER
TECHNOLOGIES AND ALSO HAVING
CONVERSATIONS WITH THE PUBLIC,
BOTH INDIVIDUALS AND COMMUNITIES
AND GROUPS, TO REALLY THINK
ABOUT THE IMPLICATIONS OF THESE
NEW TECHNOLOGIES, SO THAT WE CAN
ASK INFORMED QUESTIONS,
UNDERSTANDING, AGAIN, WHAT ARE
THE RISKS, WHAT ARE THE BENEFITS
AND WHAT DO PEOPLE THINK ABOUT
THAT SO WE CAN PROMOTE OUR
RESPONSIBLE ECOSYSTEM OF SHARING
THIS TYPE OF INFORMATION TO
ACCELERATE RESEARCH AND KEEP
TRUST WITH OUR STAKEHOLDERS
HIGH.
SO THAT'S A PARALLEL ENDEAVOR TO
SOME OF THESE CONVERSATIONS.
>> MAYBE TO ADD A LITTLE TO
ATUL'S POINT ABOUT MC3 THAT
YOU'RE SEEING COME FROM
LEVERAGING ACTIVITIES IN THE
HEALTH I.T. SECTOR, FOR EXAMPLE,
HL7 AND FIRE -- RESOURCES MAKE
IT PONL FOR US TO REALLY COLLECT
AND START THAT HARMONIZATION
PROCESS FOR CLINICAL DATA AND
CLINICAL DATA MODELS HERE IN THE
N3C AS WELL AS IN ALL-OF-US.
AND THAT'S REALLY A PARTNERSHIP
WITH H WILL 7 AND L AND TE
COORDINATOR.
SO LEVERAGING AND BRINGING
TOGETHER THOSE WITH IT
CAPABILITIES WITH RESEARCH
CAPABILITIES REALLY DOES DRIVE
THAT CLINICAL DATA AS YOU'VE
MENTIONED FLEURCHLT
>>
>> THIS HAS BEEN A RICH AND
ROBUST DISCUSSION, I DON'T WANT
TO END IT EARLY BUT I FEEL LIKE
IT'S STARTING TO WIND.
LARRY, IS THERE ANYTHING ELSE
YOU WANTED TO ADD?
>> NO, I THINK -- I DO THANK
EVERYBODY FOR CONSIDERING THE
MANY, MANY DIMENSIONS TO THIS
ISSUE.
AND OBVIOUSLY, YOU KNOW, KEEP
WATCHING THIS SPACE BECAUSE THIS
WILL EVOLVE GOING FORWARD, AND I
WOULD IMAGINE THAT THIS WILL BE
A CHECK-IN POINT WITH THE
COUNCIL ON A REGULAR BASIS
BECAUSE OF THE IMPORTANCE OF
WHAT WE'RE DOING.
SO EVEN THOUGH WE'RE A LITTLE
AHEAD OF SCHEDULE, MAYBE WE CAN
PROCEED WITH JUST A FEW QUICK
COMMENTS THAT I HAVE.
USUALLY PEOPLE ARE NOT UPSET IF
A MEETING ENDS EARLY, AND IN
FACT, THE BEST MEETINGS ARE
THOSE THAT END EARLY AND I
PROMISE TO STRIVE FOR THE BEST
MEETING RIGHT NOW.
SO FIRST JUST TO GIVE YOU A FEW
COMMENTS IN CLOSING, I WANT TO
THANK THE MANY FOLKS WHO ARE
RESPONSIBLE FOR PUTTING TOGETHER
WHAT TURNED OUT TO BE A
BICOASTAL MEETING, AND ENSURING
THAT ALL THE LOGISTICS RAN SO
SMOOTHLY.
CINDY, BRITTANY, WILL, JOHN,
TARA, AND A SPECIAL THANKS TO
ALL OF THE SPEAKERS.
SO JUST SO YOU KNOW, IN SPITE OF
COMPUTER CRASHES, INTERNET
INSTABILITY AND A FEW OTHER
THINGS THAT I WON'T BORE YOU
WITH, I HOPE THESE VARIOUS MINI
BLIPS WEREN'T APPARENT TO TOO
MANY OF YOU.
THE GROUP DID A LOT OF
CONTINGENCY PLANNING, THERE WAS
A LOT OF REDUNN TAN REDUNR
BACKUP TO WHAT THEY DID, AND AS
A RESULT, I THINK THINGS WENT
SMOOTHLY.
I DO HOPE YOU FOUND ALL THE
PRESENTATIONS INFORMATIVE.
YOUR FEEDBACK IS CRUCIALLY
IMPORTANT TO US.
AND I HOPE THE MEMBERS OF
COUNCIL WHO HAVE BEEN ON FOR A
WHILE WILL AFFIRM TO THE NEWER
MEMBERS THAT WE LISTEN VERY
CAREFULLY TO ALL OF YOUR
RECOMMENDATIONS, AND WE DO
PERIODICALLY UPDATE YOU ON
PROGRESS SO THAT YOU CAN CHECK
IN WITH US TO SEE IF WE CONTINUE
ON TRACK OR IF, IN FACT, WE ARE
SOMEHOW STRAINED.
THE NEXT ACD MEETING WILL BE
HELD DECEMBER 8TH AND 9TH, 2022.
I AM SURE WE ALL HOPE THAT THE
STATUS OF THE PANDEMIC WILL
ALLOW US TO MEET IN PERSON.
I APPRECIATE THAT YOU HAVE ALL
FOUGHT OFF VIRTUAL FATIGUE AND
STAYED WITH US THROUGHOUT THESE
PAST TWO DAYS, BUT IT WOULD BE
REALLY GREAT IF IT COULD BE
HOSTED HERE IN BETHESDA, AND WE
HAVE OUR FINGERS CROSSED.
SO THIS WELL MAY BE MY LAST ACD
MEETING.
AND IF I'M COUNTING CORRECTLY,
THIS WAS MY 44TH SINCE JOINING
NIH NOT QUITE 23 YEARS AGO.
IT'S REALLY BEEN GREAT TO MEET
ALL OF YOU IN PERSON OR
VIRTUALLY, AND I HAVE TO SAY
I'VE BEEN TRULY HONORED TO WORK
SO CLOSELY WITH THE MEMBERS OF
THE COMMITTEE AND THOSE THAT
PRECEDED YOU OVER THE PAST 12
YEARS, AND IN PARTICULAR, I WILL
HAVE TO SAY, WE'VE THOROUGHLY
ENJOYED HOSTING YOU ALL IN OUR
HOME FOR DINNER WHEN WE'VE BEEN
ABLE TO MEET IN PERSON, AND YOU
I WAS REALLY SORRY WE COULDN'T
DO THAT THIS YEAR.
I AM REALLY FOND OF TELLING
TRAINEES THAT I SPEAK TO THAT
YOU DO NOT HAVE TO BE THE
SMARTEST PERSON IN THE ROOM TO
SUCCEED.
RATHER, ALL YOU NEED TO DO IS
JUST MAKE SURE YOU'RE ALWAYS IN
A ROOM WITH SMART PEOPLE.
YOU AND ALL THE PREVIOUS ACD
MEMBERS HAVE AFFORDED ME THAT
GREAT PRIVILEGE, AND I CAN'T
THANK YOU ENOUGH FOR THAT.
I WANT EVERYBODY TO STAY SAFE,
AND THE MEETING IS ADJOURNED.
SO THANK YOU ALL.
>>THANK YOU.