WELCOME TO THE OPEN SESSION OF
THE NIDCD ADVISORY COUNCIL.
AS A REMINDER THE OPEN SESSION
OF OUR MEETING IS BEING VIDEO
CAST LIVE AND WILL BE ARCHIVED
FOR VIEWING BY MEMBERS OF THE
PUBLIC AND THE NIH STAFF FOR ONE
YEAR.
I ALSO WANTED TO REMIND THOSE ON
THE ZOOM CALL TO PLEASE KEEP
YOUR VIDEO OFF WHEN YOU'RE NOT
MEETING SO THAT THE ASL
INTERPRETER CAN BE SEEN.
AND NOW SOME ADMINISTRATIVE
ISSUES.
THE MAY MEETING IS TO SAY
GOOD-BYE TO OUR MEMBERS ROTATING
OFF.
SO I WOULD LIKE TO START TODAY
BY THANKING DR. LAUREL CARNEY
FOR HER SERVICE.
I WOULD LIKE TO EXPRESS OUR
GRATITUDE FOR YOUR TIME AND
EFFORTS WHILE SERVING AS A
MEMBER OF THE NATIONAL DEAFNESS
AND OTHER COMMUNICATION
DISORDERS ADVISORY COUNCIL.
NORMALLY WE WOULD HAND A
CERTIFICATE TO YOU THAT IS
SIGNED BY DR. TABAK RECOGNIZING
YOUR SERVICE AS A TOKEN OF OUR
APPRECIATION AND WE'LL GET THAT
CERTIFICATE TO YOU AS SOON AS
POSSIBLE.
AS HAS BEEN OUR TRADITION
RETIRING COUNCILMEMBERS ARE
INVITED TO PROVIDE US WITH
ADVISER OBSERVATIONS GLEANED
FROM YOUR TIME ON COUNCIL.
SO NOW DR. CARNEY THE FLOOR IS
YOURS.
>> HI.
IT'S BEEN VERY INTERESTING.
I REALLY APPRECIATE THE
OPPORTUNITY TO SERVE ON THE
COUNCIL.
BUT ONLY FOR A SHORT TIME AND
ONLY VIRTUALLY.
I REALLY WISH I HAD BEEN ABLE TO
JOIN IN PERSON AND I THINK I
WOULD HAVE LEARNED A LOT MORE
THAT WAY.
I DID WANT TO CALL OUT AND THANK
THE ONE PERSON IN PARTICULAR.
I DON'T KNOW IF I'M THE ONLY ONE
BUT WITHOUT NANETTE STEVENSON
HOLDING MY VIRTUAL HAND FOR THE
LAST TWO YEARS -- I WOULD NOT
HAVE GOTTEN THROUGH THE VARIOUS
HURDLES THAT ARE REQUIRED OF
COUNCIL MEMBERS.
SO I WANTED TO THANK NANETTE AND
ALSO GINGER FOR HER HELP -- IN
PROVIDING US LOTS OF
INFORMATION.
SO THANKS AND GOOD LUCK TO YOU
AS YOU PReS ON.
>> THANKS SO MUCH, LAUREL AND
THANK YOU VERY MUCH.
ALL RIGHT.
NOW WE'LL MOVE ON TO
INTRODUCTIONS OF THE REMAINING
COUNCILMEMBERS.
I'LL CALL ON EACH MEMBER AND ASK
TO YOU STATE YOUR NAME AND
AFFILIATION AND SAY A FEW WORDS
ABOUT YOUR EXPERTISE.
WE'LL START WITH DR. EMILY BUS.
>> I'M A PROFESSOR AT THE
UNIVERSITY OF NORTH CAROLINA AT
CHAPEL HILL AND I STUDY HEARING
AND HUMANS USING -- METHODS WITH
THE FOCUS ON AUDITORY METHODS
AND EFFECTS OF HEARING LOSS.
>> DR. -- CHAUDHARI
>> HELLO.
I'M VERY HONORED TO BE ON THIS
ADVISORY COUNCIL.
I'M AT THE UNIVERSITY OF MIAMI
SCHOOL OF MEDICINE AND I STUDY
PRINCIPALLY -- FROM A
PERSPECTIVE OF PERIPHERAL
MECHANISMS -- FEW RECALL
CONNECTIVITY AND -- AND PATHWAYS
IN THE BRAIN.
THANK YOU.
>> MS. VICKI WILLIAMS.
>> HI.
A LITTLE TECHNICAL DIFFICULTIES.
I'M THE CEO
[ AUDIO DIFFICULTIES ]
>> THANK YOU.
DR. RUTH ANNEATOCK.
>> HI I'M AT THE UNIVERSITY OF
CHICAGO IN NEURAL BIOLOGY.
WE STUDY THE PHYSIOLOGY OF THE
SENSORY RECEPTOR CELLS AND
NEURONS OF THE INNER EAR AND HOW
THEY USE THEIR COMPLIMENTS TO
GENERATE AND SHAPE THE
ELECTRICAL SIGNALS THAT ENCODE
SOUND AND HEAD MOTION TO BE SENT
TO THE BRAIN.
THANKS.
>> THANK YOU.
MR. RICHARD EINHORN
>> I'M I SPECIALIZE IN WORKING
ON * BETTER TECHNOLOGY SOLUTIONS
FOR PEOPLE WITH HEARING LOSS.
I'M THE FORMER CHAIR OF THE
BOARD OF THE HEARING LOSS
ASSOCIATION OF AMERICA AND I'VE
E BEEN ON THIS COUNCIL FOR TWO
YEARS NOW.
AND VERY, VERY GRATEFUL TO HAVE
THE OPPORTUNITY TO LOOK AT ALL
OF THE RESEARCH.
>> THANK YOU.
DR. CAROL ESPY WILSON.
>> HELLO.
I'M CAROL ESPY WILSON.
I'M A PROFESSOR AT THE
UNIVERSITY' MARYLAND.
I RESEARCH SPEECH COMMUNICATION
INCLUDING FUNDAMENTAL RESEARCH
AND SPEECH PRODUCTION SPEECH
PERCEPTION AND THEN DIGITAL
SPEECH PROCESSING AND I APPLY
THAT TO CLASSIFYING AND
MONITORING MENTAL HEALTH
ILLNESSES.
AND LOOKING AT SOME VOICE
DISORDERS AND ALSO SPEECH
ENHANCEMENT AND SPEECH
SEGREGATION.
>> DR. LISA GOFFMAN.
>> I'M AT THE CALLIER CENTER AT
THE UNIVERSITY OF TEXAS AT
DALLAS.
I STUDY DEVELOPMENTAL LANGUAGE
DISORDER IN CHILDREN WITH A
FOCUS ON LANGUAGE AND SPEECH
PRODUCTION AND MOTOR
DEVELOPMENT.
AND I'M INTERESTED IN SEQUENCE,
PATTERN LEARNING AND
INTERVENTION APPROACHES FOR
THESE CHILDREN
>> AND DR. ANDY GROVES.
>> HI, I'M ANDY GROVES.
IN THE DEPARTMENT OF
NEUROSCIENCE AND MOLECULAR AND
HUMAN GENETICS AT BAYLOR IN
HOUSTON.
HOW IT ACQUIRES ITS BEAUTIFUL --
AND THE PRECISE PATTERNING OF
THE SENSORY HAIR CELLS.
AND WE ALSO TRY AND STUDY THE
REGENERATION OF INNER EAR THAT
DOES NOT NORMALLY OCCUR IN THE
AUDITORY SYSTEM BUT WE ARE
HOPING ONE DAY WE MAY BE ABLE TO
CONTRIBUTE TO THAT
>> AND DR. HILLIS.
>> HELLO.
I'M CURRENTLY A PROFESSOR OF
NEUROLOGY AT JOHNS HOPKINS.
AND I AM STUDYING LANGUAGE
RECOVERY AFTER STROKE USING
BEHAVIORAL AND MULTI-MODALITY
MECHANISMS TO IDENTIFY THE
NEURAL MECHANISMS AFTER RECOVERY
AND I CONDUCT TRIALS --
INNOVATIVE TREATMENTS AND
CURRENTLY AT THE CLINICAL --
CONFERENCE AND JUST WAS
MENTORING ONE OF OUR NIDCD
SUPPORTED FELLOWS.
I WAS VERY IMPRESSED BY THE
FELLOWS THIS YEAR AND THE
RESEARCH THAT THEY PRESENTED
LAST NIGHT.
IT'S A GREAT THING THAT NIDCD IS
SUPPORTING.
>> THANK YOU.
DR. BOB HILLMAN.
>> HI.
I'M BOB HILLMAN.
THE CO-DIRECTOR AND RESEARCH
DIRECTOR AT THE CENTER FOR
REQUIRE GEIAL SURGERY AND VOICE
REHABILITATION AT MASSACHUSETTS
GENERAL HOSPITAL IN BOSTON.
I ASSESS, TREAT AND INVESTIGATE
VOICE DISORDERS AND CURRENTLY
INTERESTED IN THE USE OF
MONITORING AND BIOFEEDBACK.
7
>> MR. BARBARA KELLEY.
>> WE'RE THE LARGEST CONSUMER
GROUP OF PEOPLE WITH HEARING
LOSS IN THE UNITED STATES AND
I'M PLEASED TO BE HERE TO
REPRESENT THE CONSUMER AND
PATIENT WHO LIVES DAILY WITH THE
IMPACT OF HEARING LOSS.
>> DR. -- LALWANI.
>> I SPECIALIZE IN EARS AND --
AUDITORY DISORDERS -- AS WELL AS
HERE AT COLUMBIA UNIVERSITY IN
NEW YORK.
I CREATE TOOLS LIKE MICRONEEDLES
FOR PRECINCTS INNER EAR
DIAGNOSIS AND THIS IS A GREAT
HONOR TO SERVE ON THE NIDCD
ADVISORY COUNCIL.
FOR WHICH I THANK YOU.
>> DR. CYNTHIA MORTON.
>> HI.
I'M CYNTHIA MORTON.
I'M A MEDICAL GENETICIST AND I
HAVE A PART-TIME FACULTY
APPOINTMENT IN MANCHESTER CENTER
OF AWEDDIAL GEE AND DEAFNESS AT
THE UNIVERSITY OF MANCHESTER IN
ENGLAND.
I'VE HAD A LONG-STANDING
INTEREST IN * THE GENETICS OF
DEAFNESS AND IN MY LAB WE'RE
STUDYING THE IMPLEMENTATION OF
GENOMES IN NEWBORN HEARING
SCREENING AND ALSO DOING SOME
EDITING GENE EDITING OF A
DISORDER KNOWN AS DFAN9.
>> THE NEXT COUNCILMEMBER IS MS.
SHE IS NOT PRESENT FOR THIS
MENTION AND NEXT IS DR. D
DR. DAN-SANES
>> I'M AT NEW YORK UNIVERSITY.
I STUDY DEVELOPMENTAL PLASTICITY
CAN WHICH INCLUDES HOW YOUNG
ANIMALS LEARN AUDITORY TASKS AND
MORE SPECIFICALLY TO NIDCD HOW
EARLY DEVELOPMENTAL HEARING LOSS
AFFECTS THE DEVELOPMENT OF BRAIN
AND AFFECTS BEHAVIOR SO OUR WORK
LOOKS AT HOW TO RESCUE DEFICITS
THAT OCCUR IN THE CENTRAL
NERVOUS SYSTEM THROUGH GENETIC
MECHANISMS.
AND ALSO EXTENDS TO MECHANISMS
LIKE HOW ANIMALS CAN IMPROVE BY
LEARNING FROM EACH OTHER THROUGH
A SOCIAL LEARNING MECHANISMS.
>> THANK YOU.
DR. BEN
>> BRIDGE.
>> I'M A PROFESSOR IN THE NEURO
SCIENCE DEPARTMENT IN CLEVELAND.
MY GROUP WORKS ON SNAPIC
ORGANIZE OF DIFFERENT BRAIN
AREAS.
TRYING TO UNDERSTAND WHAT THE
NEURAL COMPUTATION PERFORMED.
AND A LOT OF OUR WORK THAT
RELATES TO THE INSTITUTE IS
RELATED TO OLFACTORY CIRCUITS
AND WHAT ROLE THE NEURONS PLAY
IN PROCESSING THE CENSOR VERY
INFORMATION
>> THANK YOU AND DR. HIGGIN.
>> GOOD MORNING.
I'M A PROFESSOR AT THE
UNIVERSITY OF CALIFORNIA IN SAN
FRANCISCO.
SCHOOL OF NURSING.
I'M IN GERIATRICS AND I RECENTLY
JOINED THE COUNCIL AS WAS
HONORED TO DO SO.
I STUDY AGE RELATED HEARING
LOSS.
THE INTERACTIONS BETWEEN THE
DIODES IN TERMS OF
RELATIONSHIPS.
I'M INTERESTED IN COMMUNICATION
ACCESS WITH WITHIN THE HEALTH
CARE SYSTEM AND ESPECIALLY
INTERESTED IN THE IMPACT OF
HEARING LOSS ON SAFECO MOON
INDICATION WITHIN HEALTH CARE
SETTINGS ACROSS ALL SETTINGS AND
TRYING TO GET HEALTH CARE
PRACTITIONERS TO UNDERSTAND WHAT
HEARING LOSS IS LIKE.
I'VE BEEN VERY ACTIVE IN THE
HEARING LOSS ASSOCIATION OF
AMERICA AND SERVED AS CHAIR FOR
SEVERAL YEARS.
AND STAY ACTIVE AT THE STATE
LEVEL NOW.
THANK YOU.
>> AND WE HAVE THREE EX OFFICIO
MEMBERS.
DR. JUDY SCHAEFER IF YOU WANT TO
SAY HELLO.
>> I'M JUDY SCHAEFER.
DOING POLICY AND PLANNING.
MY AREAS OF SPECIALIZATION ARE
DATA MANAGEMENT AND CODING,
DISABILITY COMPENSATION, HEARING
CONSERVATION AND DIAGNOSTIC
AUDIOLOGY.
>> DR. JEREMY NELSON.
REPRESENTING THE DEPARTMENT OF
DEFENSE.
NOT PRESENT.
OKAY.
AND MIST CHRISTIE THEMANN.
>> I'M REPRESENTING THE CENTERS
FOR DISEASE CONTROL AND
PREVENTION.
OUR GROUP WORKS ON PREVENTING
HEARING LOSS PRIMARILY IN
WORKERS AND I ALSO SPEND A LOT
OF TIME WORKING WITH FOLKS IN
THE BIOSTATISTICS PROGRAM AND
EPPIE STUDIES.
THANK YOU.
>> THANK YOU ALL.
SO NEXT WE'LL GO TO
CONSIDERATION OF THE MINUTES OF
THE LAST MEETING.
SO THE MINUTES OF THE
JANUARY 28-29,2022 MEETING OF
THE ADVISORY COUNCIL WERE
RECENTLY POSTED TO THE
ELECTRONIC COUNCIL BOOK AND I
WONDER IF THERE ARE ANY
ADDITIONS OR CORRECTIONS TO THE
MINUTES?
AND IF NOT, THERE IS A MOTION
THAT THEY WOULD BE APPROVED AS
WRITTEN?
>> AND SECOND.
>> SECOND.
>> ALL IN FAVOR.
>> OKAY.
VERY GOOD.
NEXT IS CONFIRMATION OF THE
DATES FOR FUTURE COUNCIL
MEETINGS.
THE DATES HAVE BEEN ESTABLISHED
AS SHOWN HERE.
AND AS I MENTIONED EARLIER IN
THE CLOSED SESSION WE'RE VERY
MUCH HOPING TO HAVE OUR NEXT
MEETING WHICH WILL BE
SEPTEMBER 8-9 AS AN IN PERSON
MEETING HERE IN BETHESDA.
AND WE MADE A DECISION BASED ON
THE FACT THAT THESE VIRTUAL
MEETINGS SEEM TO GO FOR THE MOST
PART PRETTY WELL THAT THE WINTER
OF THE THREE MEETINGS WOULD BE
HELD VIRTUALLY.
AND WE'LL SEE HOW THAT GOES.
WE MAY CHANGE THAT WITH TIME BUT
WE'RE HOPING THAT WILL HELP US
AVOID SOME WEATHER-RELATED
DIFFICULTIES SO WE'LL HOLD THE
FEBRUARY MEGA A VIRTUAL MEETING
AND THEN MAY AND SEPTEMBER IN
PERSON.
SO NEXT I WANTED TO * SOME
UPDATES TO YOU ABOUT VARIOUS
THINGS GOING ON AROUND THE NIH.
AVENUE WITHIN THE INSTITUTE.
AND SO THE FIRST THING THAT I
WANTED TO UPDATE YOU ON IS THE
ADVANCED RESEARCH PROJECTS
AGENCY FOR HEALTH ALSO CALLED
ARPA-H.
PLANS FOR THIS AGENCY ARE
BEGINNING TO CRYSTALLIZE SO I
WANTED TO PROVIDE A LITTLE BIT
MORE INFORMATION.
SO ARPA-H PROVIDES A PLATFORM
FOR PROPELLING USE DRIVEN HIGH
IMPACT BIOMEDICAL AND HEALTH
RESEARCH.
THE DRAFT MISSION OF THIS AGENCY
IS TO BENEFIT THE HEALTH OF
ALL-AMERICANS BY CATALYZING
HEALTH BREAKTHROUGHS THAT CANNOT
BE READILY BE ACCOMPLISHED
THROUGH TRADITIONAL RESEARCH OR
COMMERCIAL ACTIVITY.
SO THIS REFERS TO THE NIH AS THE
TRADITIONAL RESEARCH PATHWAY AND
INDUSTRY AS THE COMMUNITY
ACTIVITY.
SO WE'RE TALKING ABOUT DOING
THINGS THAT CANNOT BE DONE
CURRENTLY.
ARPA-H WILL SUPPORT
TRANSFORMATIVE HIGH RISK HIGH
REWARD BIOMEDICAL AND HEALTH
RESEARCH TO ACCOMPLISH A FEW
DIFFERENT THINGS.
ONE, EMBRACE A SENSE OF URGENCY
TO SPEED APPLICATION AND
IMPLEMENTATION OF BREAKTHROUGHS
AT VARIOUS LEVELS FROM POE
ELECTRIC EULAR TO THE SOCIETAL
SO THAT THEY SERVE ALL PEOPLE
SECOND, BUILD CAPABILITIES AND
PLATFORMS THAT ARE BROADLY
APPLICABLE ACROSS A RANGE OF
DISEASES AND CONDITIONS TO REV
LOSING AYES HOW WE TREAT *
DISEASE.
THE IDEAS WITH THE DIRECT
APPLICATION INTO SOLUTIONS FOR
PATIENTS QUICKLY.
AND LAST TO HELP OVERCOME MARKET
FAILURES THROUGH CREATIVE
SOLUTIONS INCENTIVES AND
DERISKING.
SO ONE IDEA THAT HAS BEEN
BROUGHT FORWARD IS THAT IF SOME
OF THE PROGRAMS DON'T FAIL THAT
MEANS THAT WE'RE NOT TAKING
ENOUGH RISK.
WE'RE NOT TRYING TO PUSH THE
ENVELOPE AS MUCH AS WE SHOULD
BE.
SO THIS IS REALLY A VERY
DIFFERENT PARADIGM THAN WE SEE
WITHIN THE NIH.
ARPA-H WILL LEVERAGE AN APPROACH
THAT WAS PIONEERED AT DARPA AND
HAS BEEN APPLIED IN OTHER AREAS
OF RESEARCH AND DEVELOPMENT SUCH
AS THOSE SHOWN ON THE NEXT
SLIDE.
SO ECHOING MANY ELEMENTS OF THE
DARPA MODEL ARPA HERE WILL BE
CENTERED AROUND ENDURING
TOLERANCE OR ACCEPTANCE AND
INSTILLING A SENSE OF URGE SEE
NIMBLENESS AND INNOVATION.
ARPA-H IS LINKED TO NIH TO DRAW
ON THE VAST KNOWLEDGE AND STRAIN
STRUCTURE HERE.
HOWEVER IT WILL REMAIN A
DISTINCT AND AUTONOMOUS
ORGANIZATION.
IT WILL SEEK TO BRING ON THE
MOST INNOVATIVE PEOPLE THAT WILL
FORM ROBUSTLY DIVERSE AND
COLLABORATIVE TEAMS.
EQUITY WILL BE CONSIDERED AN
ESSENTIAL ELEMENT OF ARPA-H AND
WILL BE KEY TO ITS INTERNAL
PRACTICES INCLUDING AND HIRING
AND IN THE PROGRAMS THAT IT
SUPPORTS AND THE AWARDS THAT ARE
MADE.
ARPA-H WILL SEEK TO BE NIMBLE
AND LEAN IN ADMINISTERING ITS
ORGANIZATION AND BUSINESS
PROCESSES AND SCIENTIFIC
PORTFOLIO.
AND TO INJECT A SENSE OF URGENCY
OPERATING UNDER TIME BOUND
PRINCIPLES FOR BOTH THE PROGRAMS
AND THE THE TENURE OF THE
PEOPLE.
THE OPEN AND TRANSPARENT ABOUT
THESE PROCESSES AND APPROACHES
AND ENGAGE STAKEHOLDERS ACROSS A
WIDE RANGE OF SECTORS AND
DISCIPLINES BOTH EARLY AND
OFTEN.
PROMOTE INDEPENDENCE AND
ACCOUNTABILITY.
REINFORCED BY AMBITIOUS
MILESTONES AND METRICS AND SEEK
TO HAVE BOLD PROGRAMS WITH THE
ACCEPTANCE THAT NOT ALL WILL BE
SUCCESSFUL BUT SHOULD OFFER
IMPACT IN RETURN ON INVESTMENT.
THE NEXT SLIDE.
SO A LITTLE BIT ABOUT THE TIME
LINE IS STARTING IN THE SUMMER
OF 2021.
WHEN THIS CONVERSATION FIRST
BEGAN.
THE OFFICE OF SCIENCE AND
TECHNOLOGY POLICY OR OSTP
PARTNERED WITH THE NIH TO PUB A
COMMENTARY IN SCIENCE OUTLINING
A VISION FOR ARPA-H AND WE HELD
INFORMATION SESSION INCLUDING
NUMEROUS MEETINGS WITH VERIFY
YIPPING ORGANIZATIONS AND
CONVENED 16 LISTENING SESSIONS
WITH OVER 5,000 PARTICIPANTS.
TO GET FEEDBACK FROM
STAKEHOLDERS INCLUDING PATIENT
ADVOCACY GROUPS, INDUSTRY AND
SCIENTIFIC PROFESSIONAL
ORGANIZATIONS.
SO THE CURRENT STATUS OF ARPA-H
IS THAT THE FY22 OMNIBUS BUDGET
IT BILL APPROPRIATED $1 BILLION
TO BE ABLE OVER THREE YEARS.
IT PROVIDED FOR A PRESIDENTIALLY
APPOINTED DIRECTOR, FLEXIBLE
HIRING AND COMPENSATION
AUTHORITIES, AWARD FLEXIBILITIES
AND IT ALSO DETERMINED THAT THE
HHS SECRETARY HAD THE AUTHORITY
TO TRANSFER ARPA-H WITHIN THE
HEALTH AND HUMAN SERVICES
DEPARTMENT.
SINCE THE APPROPRIATION THE
SECRETARY HAS TRANSFERRED ARPA H
TO NIH.
THE ARPA-H DIRECTOR IT WAS
DETERMINED THAT THE DIRECTOR
WOULD REPORT DIRECTLY TO THE HHS
SECRETARY.
SO THE UNDERSTANDING NOW IS THAT
ARPA-H WILL EXIST WITHIN THE NIH
FOR ADMINISTRATIVE PURPOSES TO
HELP LEVERAGE THE PROCESSES THAT
THE NIH HAS IN PLACE BUT WILL
NOT REPORT TO THE DIRECTOR OF
THE NIH.
SO THE DIRECTOR WILL REPORT TO
THE SECRETARY OF HHS.
PRESIDENT BIDEN HAS REQUESTED
$5 BILLION IN THE FY23 BUDGET TO
CONDUCT ITS IMMEDIATE FUTURE
ACTIVITIES.
SO WE AWAIT FURTHER NOTICE ABOUT
PROGRESS ON THIS FRONT.
I'M TOLD THAT IT'S LIKELY THAT
AN INTERIM DIRECTOR WILL BE A
POINTED BEFORE THE
PRESIDENTIALLY APPOINTED
DIRECTOR WILL BE NAMED.
AND SO WE'RE HOPEFUL THIS WILL
BE GETTING OFF THE GROUND IN THE
NEAR FUTURE.
SO TURNING TO ANOTHER INNOVATIVE
PROGRAM I WANTED TO PROVIDE AN
UPDATE ON THE PROGRAM CALLED ALL
OF US.
THE ORIGIN OF ALL OF US WAS IN
MARCH 2015.
AND AT THAT TIME THE NIH FORMED
THE PRECISION MEDICINE
INITIATIVE WORKING GROUP OF THE
ADVISORY COMMITTEE TO THE
DIRECTOR.
THIS GROUP CONCLUDE EDITS WORK
IN SEPTEMBER OF 2015 AND ISSUED
A DETAILED REPORT THAT PROVIDED
A FRAMEWORK FOR SETTING UP THE
ALL OF US RESEARCH PROGRAM.
THIS PROGRAM IS AN AMBITIOUS
EFFORT TO GAIN INFORMATION IN
ORDER TO ACCELERATE RESEARCH
THAT CAN IMPROVE HEALTH.
IT HAS CURRENTLY OVER 490,000
PARTICIPANTS.
SO WELL ON ITS WAY TO ENROLLING
A MILLION OR MORE AND IT'S
BUILDING ONE OF THE MOST DIVERSE
HEALTH DATABASES IN HISTORY.
PARTICIPANTS ARE ASKED TO TAKE
ON-LINE SURVEYS, SHARE THEIR
ELECTRONIC HEALTH RECORD AND MAY
BE ASKED TO GIVE BLOOD AND URINE
SAMPLES OR HAVE PHYSICAL
MEASUREMENTS TAKEN.
ALL OF US IS PART OF A NEW ERA
IN WHICH TECHNOLOGY EXPERTS,
COMMUNITY PARTNERS AND THE
PUBLIC WORK TOGETHER TO DEVELOP
INDIVIDUALIZED HEALTH CARE.
THE RESEARCHER WORKBENCH ALLOWS
THE DATA TO BE USED TO LEARN HOW
BIOLOGY, LIFESTYLE AND
ENVIRONMENT AFFECT HEALTH AND TO
FIND WAYS TO TREAT OR PREVENT
DISEASE.
SO WE'RE PLEASED TO SAY THAT THE
NIH WILL BE PROVIDING ADDITIONAL
ALL OF US FUNDING OPPORTUNITIES
SOON.
SO ALL OF THESE DATA ARE
AVAILABLE TO OUR RESEARCHERS TO
ACCESS AND ASK IMPORTANT
QUESTIONS ABOUT HEALTH RELEVANT
TO OUR MISSION AREAS.
SO YOU WILL BE HEARING MORE
ABOUT THOSE OPPORTUNITIES SOON.
AND NEXT I WANTED TO MENTION
THAT DURING THE MONTH OF MAY WE
CELEBRATE AND FOCUS ON
DIVERSITY, INCLUSION AND
LEADERSHIP TO ADVANCE THE
ASIAN-AMERICAN AND NATIVE
HAWAIIAN PACIFIC ISLANDER
COMMUNITIES.
THIS YEAR AS EXPRESSED IN THE
STATEMENT WE'RE NO NOT A
MONOLITH.
OUR ATTENTION TURNS TO BETTER
UNDERSTANDING THE DIVERSITY OF
THESE COMMUNITY.
WHEN WE CATEGORIZE THEM AS A
SINGLE GROUP WE ARE AWARE THAT
IT MASKS THE DIVERSITY OF THE
CUSTOMS OF THE MANY REGIONS THAT
ARE REPRESENTED.
THIS MONOLITHIC VIEW ALSO MAKES
IT DIFFICULT TO UNDERSTAND THE
DISPARITIES WITHIN THE
COMMUNITIES FROM EDUCATIONAL
LEVEL TO SOCIOECONOMIC STATUS.
SO THE NIDCD ALONG WITH THE
BROADER NIH COMMUNITY CONTINUES
TO ADDRESS ISSUES IN HEALTH CARE
DISPARITIES, SCIENTIFIC
WORKFORCE DIVERSITY AND
DISCRIMINATION THAT IMPACT THESE
COMMUNITIES.
SO I WANTED TO TELL YOU MORE, I
THINK WE MENTIONED THIS WHEN
DR. -- SPOKE AT LAST MEETING BUT
ON APRIL 7 OF THIS YEAR THE
NIDCD AND THE NATIONAL INSTITUTE
ON AGING HOSTED A WEBINAR.
AND THE PURPOSE OF THE WEBINAR
WAS TO HIGHLIGHT BASIC AND
TRANSLATIONAL RESEARCH ON
COMMUNICATION DISORDERS IN
INDIVIDUALS WITH ALZHEIMER'S
DISEASE AND RELATED DEMENTIAS
SUPPORTED THROUGH THE EFFORTS OF
THE NIDCD AND THE NIA.
WE HAVE LONG STANDING SHARED
INTEREST IN RESEARCH ON AGE
RELATED HEARING LOSS AND BALANCE
DISORDERS IN OLDER ADULTS AND
THESE INTEREST HAVE RESULTED IN
OUR TWO INSTITUTES ISSUING JOINT
FUNDING ANNOUNCEMENTS ON THESE
TOPICS.
AND THE GOAL OF THIS WEBINAR WAS
TO GIVE THE NIDCD GRANTEES AND D
RECIPIENTS OF THE SUPPLEMENTAL
FUNDING THE OPPORTUNITY TO SHARE
SCIENCE AND SPARK NEW IDEAS AND
COLLABORATIONS.
SO AS YOU CAN SEE FROM THE SLIDE
WE HAD A LONG LIST OF
DISTINGUISHED SPEAKERS THAT
PRESENTED ON STATE-OF-THE-ART
SCIENCE FROM ANIMAL MODELS AND
HUMAN STUDIES.
YOU CAN WATCH THE WEBINAR BY
VISITING THE NIH VIDEO CAST LINK
ON THE SLIDE AND THAT CAN BE
AVAILABLE TO YOU LATER AS WELL.
THIS WAS A REALLY STIMULATING
SEMINAR AND HAD A WONDERFUL
DISCUSSION SO I URGE YOU ALL TO
VIEW THAT.
LAST FRIDAY MAY 13 THE NIDCD
HELD A SYMPOSIUM CELEBRATING THE
LONG AND E LUST WOOS CAREER OF
CARTER WAES.
* THE DAY LONG SYMPOSIUM
HIGHLIGHTED THE IMPACT THAT THE
DOCTOR HAS HAD ON THE CLINICAL
PROGRAM AND THE CRITICAL
CONTRIBUTIONS THAT HE HAS MADE
TO HEAD AND NECK CANCER
RESEARCH.
THE DOCTOR IS RETIRING IN JULY.
RECRUITMENT IS CURRENTLY
UNDERWAY FOR HIS REPLACEMENT.
SO CARTER WE WILL MISS YOU AND
YOUR LEADERSHIP IN CLINICAL
EXPERTISE.
SO FAREWELL TO DR. VAN WAES.
I WANTED TO GIVE YOU AN UPDATE
ON THE DEVELOPMENT OF OUR NEXT
FIVE YEARS STRATEGIC PLAN.
SO EARLIER THIS MONTH THE DRAFT
THEMES AND GOALS OF OUR NEW
STRATEGIC PLAN WERE POSTED ON
THE NIDCD WEBSITE FOR PUBLIC
COMMENT.
THE DRAFT WAS SHARED WITH ALL
NIDCD GRANTEES AND PROFESSIONAL
AND SCIENTIFIC ORGANIZATIONS
THAT HAVE AN INTEREST IN THE
NIDCD'S MISSION.
AND ON THE NEXT SLIDE I WILL
SHOW YOU THOSE THEMES.
SO THE DRAFT PLAN HAS SIX OVER
ARCHING SCIENTIFIC THEMES AND
THERE ARE AT LEAST THREE GOALS
THAT CORRESPOND P. THE NIDCD
DEVELOPED THESE THEMES * AND
GOALS IN CONJUNCTION WITH INPUT
FROM THE SCIENTIFIC COMMUNITY
LAST YEAR.
THE DRAFT THEMES AND GOALS ARE
BASED ON AN ASSESSMENT OF THE
RESEARCH AREAS THAT REPRESENT
THE GREATEST SCIENTIFIC
OPPORTUNITIES AND ADDRESS THE
GREATEST PUBLIC HEALTH NEEDS
OVER THE NEXT 5-10 YEARS FOR THE
SEVEN MISSION AREAS IN THE
NIDCD.
AND SO THESE INCLUDE ONE TO
CAPITALIZE ON ADVANCES IN BASIC
RESEARCH.
TO ENHANCE OUR UNDERSTANDING OF
NORMAL FUNCTION AND DISORDER
PROCESSES.
TWO, TO DEVELOP AND IMPROVE
MODEL SYSTEMS TO INFORM
RESEARCH.
THREE TO PROMOTE A PRECISION
MEDICINE APPROACH TO PREVENTION,
DIAGNOSIS AND TREATMENT.
FOUR, TO TRANSLATE AND I'M
POLICE ME.
SCIENTIFIC ADVANCEMENTS.
NEXT TO FACILITATE THE USE OF
BEST PRACTICES AND BIOMEDICAL
DATA SCIENCE.
AND FINALLY TO HARNESS ADVANCE
TECHNOLOGY TIME PROVE
PREVENTION, DIAGNOSIS AND
TREATMENT.
AND NEXT IN THESE THEMES AND
THESE ARE ACCOMPANIED BY SEVERAL
NIH CROSSCUTTING PRIORITIES
WHICH INCLUDE RESEARCH TRAINING
AND CAREER DEVELOPMENT.
SCIENTIFIC WORKFORCE.
WORKFORCE DIVERSITY.
GLOBAL HEALTH AND WOMEN'S
HEALTH.
YOU CAN READ MORE DETAILS ABOUT
THESE DRAFT THEMES ALONG WITH
THE ASSOCIATED GOALS BY VISITING
THE NIDCD WEBSITE AND CLICK BE
ON THE PDF DOCUMENT.
AND THAT'S THE END OF MY
COMMENTS.
AND SO NOW THE NEXT ORDER OF
BUSINESS IS THE BUDGET REPORT.
SO I'LL WAIT A MOMENT FOR GINGER
TO GET THE SLIDES UP.
IT'S USUALLY GIVEN BY MR. ERIK
WILLIAMS WHO'S THE CHIEF BUDGET
OFFICER.
HE HAD A FAMILY EMERGENCY SO WAS
NOT ABLE TO BE WITH US TODAY SO
I'M GOING TO TAKE US THROUGH
THESE FEW SLIDES OF THE BUDGET.
PRESIDENT BIDEN SIGNED THE
CURRENT SPENDING BILL.
WE HAVE FOUR CONTINUING
RESOLUTIONS THIS YEAR.
WE WERE VERY HAPPY TO HAVE A
BUDGET.
THE FINAL ENACTED BUDGET IS
$514.9 MILLION WHICH REPRESENT A
3.4% INCREASE IN FUNDING.
AND I WANTED TO MENTION THAT
NONCOMPETING AWARDS ARE FULLY
REFUNDED AND THAT IS GOOD NEWS
FOR EVERYONE.
YOU CAN SEE WHAT THE BREAK DOWN
OF THE BUDGET IS.
IN THE FIRST FEW LINES FY22
BULGE IS ON THE RIGHT WITH 21
BUDGET TO THE LEFT FOR
COMPARISON AND SO THE RPG AWARDS
ARE SHOWN FIRST AND YOU CAN SEE
THAT THE LION'S SHARE OF THE
FUNDING IN THIS CATEGORY IS FOR
NONCOMPETING AWARDS FOLLOWED BY
COMPETING AWARDS.
WE ALSO HAVE A BUDGET AS ROGER
MILLER MENTIONED WHICH IS
REQUIRED THAT WE SPEND EVERY
YEAR.
THIS SHOWS THE BUDGET FOR
INDIVIDUAL AND INSTITUTIONAL
TRAINING GRANTS.
AS WELL AS OUR CONTRACTS, OUR
INTRAMURAL CONTRACT IS A LITTLE
UNDER 10% OF OUR TOTAL BUDGET
AND THEN A BUDGET FORECAST
RESEARCH MANAGEMENT AND SUPPORT.
THE NEXT COUPLE OF SLIDES SHOW
THE SUCCESS RATES FOR FUNDING
ACROSS THE NIH COMPARED WITH THE
NIDCD.
AND SO THE NIDCD IS IN THE BLUE
BARS AND YOU CAN SEE THAT THE
NIDCD SUCCESS RATES DO EXCEED
THE RATES OF SUCCESS ACROSS THE
WHOLE NIH SHOWN BY THE ORANGE
LINE.
-- THESE ARE SHOWN FOR THE
RESEARCH PROJECT GRANTS ON THE
TOP AND NIDCD AND NIH
FELLOWSHIPS ON THE BOTTOM.
AND I THINK THAT IS THE LAST
SLIDE.
YES.
OKAY.
ALL RIGHT.
AND SO NEXT WE HAVE REPORT OF
THE DIVISION OF SCIENTIFIC
PROGRAMS BY DR. COOPER.
>> GOOD AFTERNOON, ALL.
I KNOW I'M IN THE TIME SLOT AS A
DIRECTOR OF THE DIVISION OF
SCIENTIFIC PROGRAMS BUT I
ACTUALLY AM USING THIS TIME TO
PROVIDE AN UPDATE FROM THE NIDCD
IMPLEMENTATION COMMITTEE.
YOU'LL RECALL THAT IN JANUARY I
PROVIDED A RESPONSE TO MANY OF
THE RECOMMENDATIONS IN THE
ADVISORY COUNCIL'S DIVERSITY
REPORT.
ACTIONS AND ACTIVITIES ARE
CONTINUING AT A GOOD PACE.
AND THE COMMITTEE WHICH I CHAIR
-- AGREED THAT YOU SHOULD HEAR
ABOUT AND I HOPE WILL BE PLEASED
ABOUT THE PROGRESS JUST SINCE MY
JANUARY REPORT.
HERE IS A QUICK REMINDER OF THE
COMMITTEE AND FOR WHOM I'M
SPEAKING TODAY.
WE'RE REPRESENTATIVE OF VARIOUS
PARTS OF NIDCD AND I KNOW THAT I
SPEAK FOR THE GROUP WHEN I SAY
THAT WE ALL SHARE A COMMITMENT
TO CHANGE IN ISSUES AND WORKING
TO ADDRESS MANY OF THOSE ISSUES
THAT WERE RAISED IN YOUR
DIVERSITY REPORT.
THIS SLIDE ILLUSTRATES JUST A
SAMPLING OF RECENT ACTIVITIES
SINCE THE JANUARY COUNCIL WITH
ALL THREE REPRESENTING WHAT I
CONSIDER AN OVER ARCHING
RECOMMENDATION FROM THE
DIVERSITY REPORT.
THAT IS REACH OUT, PROVIDE
OPPORTUNITIES, EXPAND.
THE WEBINAR IN FEBRUARY WAS LED
BY -- ALBERTO -- OUR TRAINING
OFFICER AND JOANNE -- THE CHIEF
OF OUR OFFICE OF HEALTH
COMMUNICATION AND PUBLIC
LIAISON.
THROUGH THEIR COMMITMENT AND
EFFORTS WE HAD A SUCCESSFUL AND
INFORMATIVE 30 MINUTE OVERVIEW
OF OUR NEW EXTRAMURAL
OPPORTUNITIES TO ENHANCE THE
DIVERSITY OF NIDCD RESEARCH
WORKFORCE.
THE OVERVIEW WAS FOLLOWED BY A
LIVE Q&A WITH NIDCD STAFF.
IN THE WHOLE PROGRAM WHICH WAS
RECORDED WAS PUT ON OUR NIDCD
WEBSITE FOR THOSE WHO WERE
UNABLE TO WATCH LIVE AND ALSO
FOR THOSE FUTURE APPLICANTS AS
THEY COME TO LEARN ABOUT THIS
PROGRAM.
THE NATIONAL BLACK ASSOCIATION
FOR SPEECH LANGUAGE AND HEARING
HELD ITS ANNUAL CONVENTION IN
MARCH AND THREE NIDCD STAFF MADE
TWO DIFFERENT PRESENTATIONS IN
AN EFFORT TO REACH OUT TO THIS
MEMBERSHIP AND GET THEM FAMILIAR
WITH NIDCD.
THE MEXIC NEXT -- CONVENTION WIE
IN THE SPRING IN WASHINGTON,
D.C.
A PILOT PROGRAM WAS IN DIRECT
RESPONSE TO THE REPORTS URGING
THAT NIDCD NEEDED TO DO MORE TO
REACH OUT TO HIGH SCHOOL AND
UNDERGRAD WEIGHTS FROM DIVERSE
BACKGROUNDS.
THIS PILOT WAS OFFERING NIDCD
RO1PIs A CHANCE TO INVOLVE
SUCH INDIVIDUALS IN THEIR LAB
AND CLINIC AND RESEARCH FOR A
SUMMER EXPERIENCE.
APPLICATIONS HAVE BEEN REVIEWED
AND SEVEN AWARDS HAVE BEEN MADE
TO PIs FROM ALL OF OUR MISSION
AREAS TO ALLOW THESE STUDENTS A
FIRST RESEARCH OPPORTUNITY.
WE WILL BE CONSIDERING NEXT
STEPS IN DETERMINING SUCCESS AS
WELL AS THE FUTURE OF THIS
ACTIVITY.
ON THIS SLIDE YOU'LL SEE A
SCREEN SHOT OF THAT PORTION OF
OUR WEBSITE WHICH WITH A CALL
BUILDING A DIVERSE SCIENTIFIC
WORKFORCE.
I -- I MENTIONED THIS IN JANUARY
-- HOW AMAZING THIS SITE WAS.
THIS WEBSITE IN MY MIND LEVELS
THE PLAYING FIELD FOR ALL
POTENTIAL APPLICANTS ESPECIALLY
THOSE MORE JUNIOR INVESTIGATORS
FROM PERHAPS MORE LOW RESOURCE
INSTITUTIONS.
WE HAVE AN ENTIRE SESSION
ENTITLED HOW TO APPLY FOR A GRAM
INCLUDING IN THE RED BOX SAMPLE
GRANT APPLICATIONS.
IN JANUARY -- SINCE JANUARY
WE'VE ADDED A THIRD APPLICATION
AND SUMMARY STATEMENT AND THUS
NOW WE HAVE EXAMPLES FROM ACROSS
OUR MISSION AREAS.
AT LAST COUNT WE HAD ALMOST 500
HITS ON THIS SITE.
WE'RE NOW TALKING ABOUT NEXT
STEPS OF WHAT OTHER GRANT
MECHANISMS SUCH AS SBIRs OR
OUR OWN EARLY CAREER RESEARCH
PROGRAM THAT WOULD BE
PARTICULARLY HELPFUL TO HAVE
EXAMPLES FOR POTENTIAL
APPLICANTS.
SINCE JANUARY A NUMBER OF GRANTS
SOLICITATIONS RELATED TO
DIVERSITY, INCLUSION AND EQUITY
AND ACCESSIBILITY HAVE BEEN
ISSUED AND SEVERAL NIDCD HAS LED
OR COSPONSORED.
THE MOST EXCITING IS OUR VERY
OWN NIDCD RESEARCH OPPORTUNITIES
FOR NEW INVESTIGATORS TO PROMOTE
WORKFORCE DIVERSITY.
IT'S AN RO1 OPPORTUNITY WHICH
WAS DEVELOPED AND LED BY DSP
STAFF KELLEY KING, JANET SEAR
AND SUSAN SULLIVAN AND ALSO
MELISSA STICK AND BECKY WAGNER
MILLER.
THIS INITIATIVE WHICH WILL BE
PEER REVIEWED BY A SPECIAL NIDCD
REVIEW COMMITTEE HAS AS ITS
PURPOSE -- TO SOLICIT APPEAR
FLIP CASES THAT PROMOTE
INDEPENDENT RESEARCH PROJECTS
THAT ARE WITHIN THE SPECIFIC
MISSION.
THIS PROGRAM IS INTENDED TO
SUPPORT EARLY STAGE AND NEW
INVESTIGATORS FROM DIVERSE
BACKGROUNDS.
INCLUDING THOSE FROM GROUPS
UNDER REPRESENTED IN THE HEALTH
REPRESENTED SCIENCES.
A UNIQUE ASPECT OF THIS
OPPORTUNITY IS THAT NO
PRELIMINARY DATA ARE REQUIRED.
WITH THE HOPE AGAIN OF LEVELING
THAT PLAYING FIELD AND
ENCOURAGING APPLICATIONS FROM
INDIVIDUALS WHO MIGHT NOT BE
READY TO SUBMIT THAT TRADITIONAL
RO1.
YOU'LL NOTE FROM THE SLIDE THAT
THERE ARE SEVERAL SUBMISSION
DATES.
TO GET THE MESSAGE OUT ABOUT
THIS OPPORTUNITY BEYOND THE
STANDARD APPEARANCE IN THE NIH
GUIDE TO GRANTS AND CONTRACTS
WE'VE CONTACTED SOME OF YOU OUR
CURRENT INVESTIGATORS
HISTORICALLY BLACK COLLEGES AND
UNIVERSITIES, MINORITY SERVED
INSTITUTIONS AS WELL AS
INVESTIGATORS, PIs WHO HAVE
SUBMITTED IN THE PAST TWO YEARS
BUT THEY'VE BEEN UNSUCCESSFUL.
THERE HAS BEEN ALREADY A GREAT
DEAL OF INTEREST IN THIS
ANNOUNCEMENT AND WE'RE VERY
HOPEFUL FOR A ROBUST RESPONSE.
ON THE NEXT TWO SLIDES YOU'LL
SEE EXAMPLES OF RECENT
ANNOUNCEMENTS THAT WERE PROTECT-
APPROPRIATE.
THESE ARE REQUEST FOR
APPLICATIONS.
SOCIAL, ETHICAL AND BEHAVIORAL
IMPLICATIONS, RESEARCH ON
DISPARITIES AND COVID TESTING
AMONG UNDERSERVED AND VULNERABLE
POPULATIONS OR A COMMUNITY
ENGAGED RESEARCH ON ON RAPID
TESTING AMONG UNDERSERVED AND
VULNERABLE POPULATIONS.
TWO ADDITIONAL ANNOUNCEMENTS --
NOTICES OF SPECIAL INTEREST
ADMINISTRATIVE SUPPLEMENTS TO
RECOGNIZE EXCELLENCE AND
DIVERSITY AND EQUITY AND
INCLUSION AND ACCESSIBILITY
MENTORSHIP AND INCREASING UP
TAKE OF EVIDENCE BASED SCREENING
IN DIVERSE POPULATIONS ACROSS
THE LIFE-SPAN.
AND JUST A REMINDER EVEN IF WE
HAPPEN TO MISS THE CHANCE TO
SIGN ON TO ONE OF THESE
INITIATIVES WE FIND OUT AFTER
IT'S PUBLISHED WE STILL HAVE THE
OPPORTUNITY TO FUND OR CO-FOUND
AN APPLICATION THAT WAS
SUBMITTED IN OUR SCIENTIFIC AREA
AS YOU WILL RECALL AS EVIDENCED
BY AN EXAMPLE THAT WE DISCUSSED
EARLIER TODAY IN THE CLOSED
SESSION.
REST ASSURED SHOULD WE HAVE ANY
RESPONSES OR ACTIONS WE WILL
KEEP YOU INFORMED.
THE COMMITTEE WANTS YOU TO BE
AWARE OF UPCOMING ACTIVITIES AND
ISSUES.
IN JUNE WE WILL HAVE OUR VIRTUAL
BOOT CAMP FOR OUR DIVERSITY
SCHOLARS.
RECIPIENTS OF DIVERSITY
SUPPLEMENTS FROM FY21.
A PROGRAM THAT I MENTIONED IN
JANUARY.
ALBERTO -- OUR TRAINING OFFICER
WILL BE PROVIDING TO THESE
DIVERSITY SCHOLARS AND THEN A
LIVE OPPORTUNITY TO ASK
QUESTIONS.
THERE ARE CERTAINLY IN THE WORKS
ADDITIONAL NOSI AND FUNDING
OPPORTUNITIES ANNOUNCEMENTS *
AND WE WILL BE CONSIDERING OUR
PARTICIPATION AND LETTING YOU
KNOW ABOUT THOSE.
WE ARE AS YOU KNOW IN THE MIDST
IN THE PROCESS OF HIRING OUR
CHIEF DIVERSITY OFFICER.
AN AD HAS BEEN POSTED AND THE
SEARCH HAS CLOSED AND A
COMMITTEE IS REVIEWING THE
APPLICATIONS AND WE ANTICIPATE
THAT INTERVIEWS WILL BE
SCHEDULED AND HELD IN THE MONTHS
AHEAD.
IN SEPTEMBER AS PART OF THE
ANNUAL REPORT FROM OUR DIRECTOR
OF THE INTERMURAL DIVISION
YOU'LL HEAR ABOUT DEIA EFFORTS
IN THAT DIVISION AND THE
IMPLEMENTATION COMMITTEE IS
CONTINUING TO EXPLORE STRATEGIES
WHICH MIGHT ENHANCE DIVERSITY
AND MENTORING IN NIDCD RESEARCH
AND CLINICAL AWARDS.
ON BEHALF OF ALL OF THE MEMBERS
OF THE IMPLEMENTATION COMMITTEE
I SAY AGAIN THANK YOU AGAIN TO
THE COUNCIL FOR THE IDEAS AND
THE ENCOURAGEMENT THAT IS
CONTAINED IN THE DIVERSITY
REPORT.
WE HEARD YOU AND WE ARE TAKING
ACTION.
THANK YOU.
>> THANK YOU, JUDITH.
THAT IS ALL VERY EXCITING.
A LOT OF PROGRESS IN A SHORT
PERIOD OF TIME.
SO WE ARE A LITTLE BIT AHEAD OF
SCHEDULE AND WE ARE SCHEDULED TO
TAKE A BREAK AND RETURN AT 2:10
AND GIVEN THAT WE WILL BE HAVING
SPEAKERS THAT ARE COUNTING ON
STARTING AT 2:10 THAT WE'LL
BREAK FOR A LITTLE BIT LONGER
PERIOD OF TIME.
SO WE WILL SEE YOU ALL BACK AT
10 AFTER THE HOUR.
I AM VERY EXCITED TO INTRODUCE
OUR NEXT TWO SPEAKERS.
SO PLEASE JOIN ME IN WELCOMING
DR. TILAK RATNANATHE AND
DR. POORNA KUSHALNAGAR WHO WILL
DISCUSS EFFORTS TO INVOLVE DEAF
AND HARD OF HEARING INDIVIDUALS
IN SCIENCE AND RESEARCH.
DR. RATNANATHE IS AN ASSOCIATE
RESEARCH PROFESSOR OF BIOMEDICAL
ENGINEERING AT JOHNS HOPKINS
UNIVERSITY.
HE HAS AN INTEREST IN ANALYSIS
OF BRAIN STRUCTURES IMPLICATED
IN NEURO PSYCHIATRIC AND NEURAL
DISORDERS.
HE HAS BEEN HONORED TO INCREASE
THE DIVERSITY OF THOSE IN STEM
FIELDS THROUGH THE RECRUITMENT
OF DEAF AND HARD OF HEARING
STUDENTS.
HE RECEIVED THE PRESIDENTIAL
AWARD FOR EXCELLENCE IN SCIENCE
MATHEMATICS AND ENGINEERING
MENTORING FROM PRESIDENT OBAMA.
DR. KUSHALNAGAR IS A PROFESSOR
AND DIRECTOR OF THE CENTER FOR
DEAF HEALTH EQUITY AT GALLAUDET
UNIVERSITY.
HER PRIMARY RESEARCH INTEREST
ARE IN DEAF, HEALTH EQUITY AND
PATIENT REPORTED OUTCOMES
RESEARCH.
DR. KUSHALNAGAR WAS RECENTLY
AWARDED AN NIH COMMON FUND AWARD
IN THE NAME IS THE
TRANSFORMATIVE RESEARCH TO
ADVANCE HEALTH EQUITY AWARD.
THE TITLE OF HER PROJECT IS
USING TECHNOLOGY ENHANCED
APPROACHES TO ADVANCE CANCER
HEALTH EQUITY AMONG DIVERSE
DEAF, DEAF BLIND AND HARD OF
HEARING POPULATIONS.
SO WELCOME TO YOU BOTH.
I THINK TILAK IS SPEAKING FIRST.
>> THANK YOU VERY MUCH
DR. TUCCI.
-- OKAY.
LET ME SHARE THE SCREEN NOW.
CAN EVERYBODY SEE THE SCREEN?
>> YES.
>> OKAY.
THANK YOU.
I WOULD LIKE TO THANK YOU FOR
THE OPPORTUNITY TO TALK ABOUT 30
YEARS OF SCIENTISTS AND
CLINICIANS WITH HEARING LOSS AND
IN NIDCD RESEARCH AREAS.
AND I WOULD LIKE TO ACKNOWLEDGE
TWO PEOPLE -- DR.
SO IN SPRING OF 1989 -- AFTER A
SEMINAR I KNEW WHAT I WANT TO DO
FOR THE REST OF MY LIFE.
A YEAR LATER AT THE AG BELL
CONVENTION IN D.C. -- AND THAT
LED TO THE INVITATION.
AT THE SAME TIME I PICKED UP
THIS BOOK -- -- SO I WOULD LIKE
TO QUOTE SOMETHING THAT CAUGHT
MY ATTENTION.
THE NIDCD SHOULD LEAD THE EFFORT
TO RECRUIT DEAF INVESTIGATORS
AND CLINICIANS AND TO PURSUE THE
RECRUITMENT AND RESEARCH OF
INDIVIDUALS WITH COMMUNICATION
DISORDERS.
TOO OFTEN DEAFNESS AND
COMMUNICATION DISORDERS HAVE
BEEN GROUNDS FOR EMPLOYMENT
DISCRIMINATION.
THE NIDCD HAS A SPECIAL
RESPONSIBILITY TO ASSURE THAT
THESE CITIZENS ARE OFFERED EQUAL
OPPORTUNITY.
THAT WAS MUSIC TO MY EARS.
THE FOLLOWING YEAR FEBRUARY OF
'92 -- THERE WERE THREE PEOPLE
WITH HEARING LOSS.
MYSELF, DR. ATLER -- -- AND THEN
-- KAMATH.
A YEAR LATER WE WERE JOINED BY
-- HE WAS THE FIRST -- SO 30
YEARS LATER THERE WERE AT LEAST
15 PRESENTATIONS AND AT LEAST --
ALL WITH HEARING LOSS.
IN PERSON NORMALLY WE HAVE
ANNUAL DINNER -- 20-25 ATTENDED
WITH HEARING LOSS.
WE HAVE HAD THREE IN THE LAST
YEAR.
THE LAST ONE MOST VIEWED PAPER
-- -- THE -- DR. BROOK HOUSER --
AND IN 1994 -- WROTE A PAPER --
SAYING THAT THE NUMBER -- WERE
UNDER REPRESENTED.
AMONG THE CADRE OF SCIENTISTS IN
RESEARCH.
AND THEN HE -- AND OVER THE
SUMMER PROGRAM -- I REMEMBER
ASKING A QUESTION -- HE ASKED --
ME TO TAKE PART IN THE SUMMER
PROGRAM.
SO I DID.
AT THE SAME TIME -- LINA RICE --
-- -- AND -- AT THE SAME TIME --
-- THE SUMMER PROGRAM.
THE MICHIGAN PROGRAM
PARTICULARLY THE GALLAUDET
STUDENTS BUT NOT -- ---THOSE WHO
HAD COCHLEAR IMPLANTS AT THE
TIME LATER GOT PhD.
ON THE RIGHT-HAND SIDE --
DEMONSTRATE THE DRAMATIC IMPACT
-- ALL OVER THE WORLD --
PRODUCED -- -- AND WE HAVE ABOUT
40-50 PAPER PER YEAR AND THAT IS
THE PART OF WHAT WE OBTAINED --
A POWER DYNAMIC SHIFT.
NOT THE SAME.
7 AND THEN WE BELIEVE THAT MORE
AND MORE PEOPLE -- AND
INDIVIDUAL COCHLEAR IMPLANTS --
THAT MEANS MOST STUDENTS -- WANT
TO PAY BACK TO SOCIETY.
FORTUNATELY WE EMPHASIZED AT ONE
POINT -- AND THEREFORE -- AND WE
ACKNOWLEDGE -- NIDCD --
SUPPLEMENT -- STANFORD -- AND
MANY TRAINEES WITH HEARING LOSS.
AND
AND ABOUT 18 MONTHS AGO
DR. TUCCI HAD A NICE
PRESENTATION AND SHOWED A SLIDE
-- SO WHAT I DID -- THROUGH THE
FREEDOM OF INFORMATION -- -- --
-- AND REPORTED ON DIETARY
SUPPLEMENT FROM 1989 TO 2006.
AND WE HAVE ABOUT 15 OR 16 --
SUPPLEMENTALS -- -- -- -- THREE
PhD STUDENTS AND THREE
POSTDOCS AND MANY INTERNS BUT WE
HAVE TO COMPLETE THE DATA. SO
WHAT WORKS?
CLEARLY VERTI VERTICAL MENTORING
WORKS.
WE HAVE 8PIs AND THREE -- --
EDUCATIONAL -- AND OTHER
SCIENTISTS LEARN IN THE LAB.
7 AND THE PEDAGOGY -- WE RECRUIT
THROUGH SCHOLARSHIP AND
FINANCIAL AID.
AND WE ENCOURAGE -- RIGHT NOW
I'M TELLING PEOPLE TO -- -- AND
HAVE HYBRID CAPTIONING.
ONE NOTES AND LIVE CAPTIONS.
-- HISTORIC OUTCOMES.
CHALLENGES AND SOLUTIONS.
WE HAVE HALF A MILLION COLLEGE
STUDENTS WITH HEARING LOSS.
--
>> THANK YOU SO MUCH TILAK FOR
THAT INSPIRATIONAL AND THOUGHT
PROVOKING TALK.
I LOVED IT AND WILL FOLLOW-UP
WITH YOU ABOUT SOME OF THE
QUESTIONS THAT YOU HAVE.
7 AND SO NOW POORNA, THANK YOU.
>> GOOD AFTERNOON, EVERYONE.
THANK YOU SO MUCH FOR INVITING
ME HERE TO SPEAK WITH YOU ALL
HERE TODAY.
IT'S MUCH APPRECIATED.
MY HAT IS OFF TO YOU
DR. RATNANATHE.
I'M SO APPRECIATIVE OF YOUR
RESEARCH AND THE IMPACT THAT IT
HAS HAD ON THE FIELD.
AGAIN, MY HAT IS OFF TO YOU AND
A GRACIOUS APPRECIATION.
7 I'M GOING TO BE SHARING MY
PROFESSIONAL AND PERSONAL
EXPERIENCE IN SCIENCE AND HOW IT
HAS IMPACTED THE INCLUSION AND
NONINCLUSION OF DEAF AND HARD OF
HEARING STUDENTS IN SCIENCE AND
RESEARCH.
WHAT SEE HERE ON THIS
PowerPoint ARE A VARIETY OF
PIECES OF MY JOURNEY IN HISTORY
AND EFFORTS INVOLVING SCIENCE
AND RESEARCH.
DURING MY PREDOCTORAL TRAINING
DURING THAT TIME OF 2002 TO 2007
-- IT WAS NOT WELL-KNOWN FOR
DEAF AND HARD OF HEARING
INDIVIDUALS TO HAVE LARGE SIZED
GRANTS AT THAT PARTICULAR TIME
AND MY EXPOSURE TO ROLE MODELS
WHO WERE DEAF AND HARD OF
HEARIHEARHEARING WAS VERY LIMITD
THOSE INDIVIDUALS DID NOT
IDENTIFY IF I HAD ROLE MODELS AS
WOMEN OR WOMEN OF COLOR AND AT
THAT TIME RESEARCH IDEAS WERE
BUILT ON COMMUNITY CONCERNS.
8 AND THEY WERE OFTEN TIMES NOT
IN THE REALM OF SIGN LANGUAGE
NOR WERE THEY FOCUSED ON DEAF
GAIN.
THEY WERE MORE SO FOCUSED ON THE
LOSS OF HEARING.
AND THE POPULATION OF
INDIVIDUALS REGARDLESS OF WHAT
CHANGE THEY USED OFTEN TIMES WAS
SPOKEN.
DURING MY DOCTORAL TRAINING
YEARS MY FIRST EFFORTS TO
INCLUDE DEAF AND HARD OF HEARING
PEOPLE IN THE FIELD -- IN
SPECIFIC IDENTIFICATION OF
ISSUES WERE COMMUNITY-BASED.
SO WE HAD A MENTAL HEALTH SUMMIT
WITH A VARIETY OF MEMBERS
INCLUDING RESEARCHERS, HEALTH
CARE PROFESSIONALS AND SO FORTH.
ALL OF US GATHERED TOGETHER TO
DISCUSS ISSUES THAT CONTRIBUTED
TO MENTAL HEALTH PROBLEMS IN THE
DEAF AND HARD OF HEARING
COMMUNITIES RESPECTIVELY AND I
SAY THIS BECAUSE THIS WAS A
CATALYST TO ALL OF US AT A
VARIETY OF LEVELS WITHIN THE
SCIENTIFIC FIELDS TO CONTRIBUTE
THESE IDEAS.
AND THIS IS THE CORE OF MY WORK
THAT I HAVE DONE THROUGHOUT MY
RESEARCH WITH NIH.
AT THE SAME TIME I APPLIED FOR
AN F31 GRANT AND I WAS THE FIRST
STUDENT IN MY PhD PROGRAM TO
APPLY.
THE PROGRAM AT THE TIME WAS
FAIRLY NEWLY FORMED.
IT WAS A DEVELOPMENTAL
NEUROSCIENCE PROGRAM.
AND I RECEIVED -- I DID NOT
RECEIVE THE FUNDING.
MY SCORING WAS UNABLE TO MEET
THE NEEDS AND THE APPLICATION
THEN WAS DENIED.
SO AT THAT TIME I WAS ALSO
CARING FOR TWO CHILDREN.
I WAS FOCUSED ON THINGS THAT
WERE A BIT DIFFERENT THAN A I AM
RIGHT NOW.
INDIVIDUALS WHO WERE
INTERPRETING MAY NOT HAVE BEEN
ADEPT AT DOING SO SO IN ORDER TO
KEEP UP WITH THE MAINTENANCE OF
MY CLASSES TO TAKE CARE OF MY
CHILDREN TO ENGAGE WITH THE
COMMUNITIES AND SO FORTH I WAS
AT A VERY DIFFERENT POINT IN MY
CAREER.
I THEN MOVED OVER TO MY
POSTDOCTORAL TRAINING AND THAT
WAS DURING 2008-2011 AND AT THE
TIME THERE WAS AN NIDCD FUNDING
TO DO A NATIONAL STUDY THAT WAS
FOCUSED ON THE QUALITY OF LIFE
SPECIFIC TO DEAF AND HARD OF
HEARING YOUTH.
IT WAS VERY EXCITING TO SEE THIS
BECAUSE THIS WAS FUNDED BY
NIDCD.
SO IT WAS THE FIRST OF ITS KIND.
IT HAD BEEN HISTORICALLY LIMITED
TO HEARING SCIENCE AND WHILE
THERE WERE DEAF AND HARD OF
HEARING YOUTH INCLUDED IT WAS
MUCH MORE OF A BROAD INVESTMENT
RATHER THAN SPECIFICALLY
CENTERED ON THIS SCIENTIFICALLY
AND I'M SO APPRECIATIVE OF THIS.
THERE WHAT ALSO A DIVERSITY
SUPPLEMENT AND THE EXPERIENCE
THAT I HAD ALSO HAD A VARIETY OF
CHALLENGES.
MY HUSBAND AT THE TIME WAS IN
HIS SECOND PhD.
MY KIDS WERE ALSO IN SCHOOL.
SO IT WAS NOT A -- MOVE FOR US
TO MOVE AND CONTINUE WITH OUR
STUDIES AND NIDCD WAS SO KIND TO
ALLOW FOR REMOTE WORK SO I COULD
STAY WITH MY FAMILY.
AND I THEN TRAVELED TO CONNECT
WITH MY PI AND FELLOWSHIP ON A
QUARTERLY BASES.
IN 2010 EARLY CAREER TRAINING
WHICH WAS NOT COMMON WAS WHERE I
IDENTIFIED MY CHALLENGES AND
UNDERSTOOD WHERE I NEEDED TO GET
THROUGH.
IN A VARIETY OF WAYS.
SO, THAT IS WHEN I DID MY SECOND
POSTDOC AT A DIFFERENT
UNIVERSITY AND I HAD SUPPORT ON
MY K GRANTS.
SO THAT PARTICULAR PROGRAM --
SERVED SEVERAL DEAF AND HARD OF
HEARING POSTDOCTORAL STUDENTS.
I WAS FORTUNATE TO BE IN AN
ENVIRONMENT WITH FELLOW DEAF AND
HARD OF HEARING SCIENTISTS AT
THE TIME.
NONE OF THE LEADERS WHO WERE
PIs IDENTIFIED AS DEAF OR HARD
OF HEARING.
IT WAS VERY MUCH GUIDED BY A
MAJORITY COMMUNITY OF HEARING
INDIVIDUALS.
THEY WERE ALSO ALL MALE.
NO FEMALE PIs AT THE TIME.
EVERYONE IDENTIFIED AS WHITE.
NONE OF THEM IDENTIFIED AS
INDIVIDUALS OF COLOR.
REGARDLESS I STILL HAD QUITE A
POSITIVE EXPERIENCE IN MY
TRAINING AT THAT PARTICULAR
INSTITUTE AND I DEVELOPED
SIGNIFICANT GRANT WRITING
SKILLS, RESEARCH SKILLS ETC.
HOWEVER AT THAT TIME THE
UNIVERSITY DID NOT HAVE A STRONG
INTERPRETER TEAM.
SO I WAS AT THE MERCY OF
INTERPRETERS WHO WERE ASSIGNED
THAT WERE NOT ADEPT IN THE
TRANSLATION OF INFORMATION FROM
SPOKEN ENGLISH TO SIGN LANGUAGE
SO I DID EXPERIENCE SIGNIFICANT
GAPS AND DELAYS IN RECEIVING
INFORMATION WHICH IMPACTED MY
EARLY DOCTORAL AND CAREER
TRAINING.
AT THAT TIME WHICH WAS ABOUT
2010-2012 AGAIN THERE WERE NOT
MANY DEAF AND HARD OF HEARING
INDIVIDUALS WHO WERE PIs.
THERE WERE DEAF AND HARD OF
HEARING FOLKS THAT WERE STARTING
THEIR CAREER BUT NOT YET AT THE
LEVEL OF PRINCIPLE INVESTIGATOR.
AND INDIVIDUALS WHO WERE PIs
WERE NOT DOING THE WORK THAT I
WAS INTERESTED IN SO I
EXPERIENCED SIGNIFICANT
DIFFICULTIES IN FINDING
MENTORSHIPS AND TEAMS DURING
THAT PARTICULAR TIME AND THAT
WAS REQUIRED OF THE K
APPLICATION SO I EXPERIENCE
EDELMAN EAR BARRIERS BECAUSE OF
THE LACK OF RESOURCES THAT WERE
AVAILABLE TO ME.
FACULTY SHARED WITH ME POORNA
YOU'RE INTERESTED IN DEAF HEALTH
DISPARITIES.
I'M NOT THE BEST PERSON TO
MENTOR YOU.
AND THIS WAS A REPEATED MESSAGE
AND OFTEN TIMES PEOPLE WOULD SAY
I DON'T KNOW ANY ONE WHO'S DEAF
OR HARD OF HEARING.
I DON'T KNOW ENOUGH ABOUT THE
COMMUNITIES AND THEIR
EXPERIENCES WITH HEALTH
DISPARITIES SO WE ARE NOT ABLE
TO MENTOR YOU SO I MOVED ON AND
TRIED FOR A NEW GRANT.
THE SMALLER RESEARCH GRANT AT
THE TIME AND DURING THE YEARS OF
2012-2014 THIS PERIOD WAS
FOCUSED ON BUILDING A NETWORK OF
DEAF AND HARD OF HEARING
RESEARCHERS.
COLLABORATING WITH MENTORS AND
PARTNERS TO SUPPORT IN THESE
GRANT APPLICATIONS.
SO I THEN APPLIED FOR AS I
MENTIONED SMALLER MEDICAL
RESEARCH GRANTS RO3s.
R21EE AD NAUSEAM AND I WAS
UNABLE TO GET FUNDING.
I CHOSE TO CREATE A PHENOMENAL
TEAM THAT I HAVE COLLABORATED
WITH THUS FAR AND THIS
INCREDIBLE NETWORK OF PEOPLE.
AND THESE FOLKS HELPED ME GET
R15 AND R1 GRANTS IN THE YEAR
2015 WHICH IS THE NEXT PART OF
MY HISTORY AND JOURNEY.
DURING THAT TIME THE 2015 TO
2021 YEARS THERE WAS A
SIGNIFICANT COMMITMENT FROM NIH
TO INCREASE THEIR DIVERSITY
POPULATION WITHIN SCIENCE AND I
FELT LIKE I HAD GOTTEN THIS
MONEY AT THE RIGHT TIME AND IT
WAS FINALLY AVAILABLE TO SUPPORT
THOSE HARD TO REACH GROUPS THAT
I HAD BEEN SPEAKING OF IN
EARLIER CAREER TIMES.
I RECEIVED FIVE OF THOSE
ADMINISTRATIVE SUPPLEMENTS AND
TWO DIVERSITY SUPPLEMENTS DURING
THAT TIME.
AND THOSE WERE TO SUPPORT THE
HARD TO REACH GROUPS.
FOR EXAMPLE, SEXUAL AND GENDER
MINORITIES IN ADDITION TO PEOPLE
WHO WERE FROM RACIAL AND ETHNIC
ABOUT BACKGROUNDS WHO WERE
MINORITIZED AND EXPERIENCED
DISPARITIES IN HEALTH.
THE DEAF AND HARD OF HEARING
INDIVIDUALS THAT I WORKED WITH
WERE ALSO CARETAKERS OF
INDIVIDUALS WHO WERE
EXPERIENCING ALZHEIMER'S AND
DIMENSION YA AND DURING THAT *
FIVE TO SIX YEAR PERIOD ALL OF
THE FUNDING AND ACCEPT --
SUPPLEMENTS FOCUSED ON THE TEAMS
WHO WERE DI DIVERSE -- EVERY ONF
US WORKED TOGETHER TO RECRUIT
OVER 2000 DEAF, DEAF BLIND AND
HARD OF HEARING ADULTS WHO ARE
SIGN LANGUAGE USERS IN THE
UNITED STATES.
AND PUERTO RICO, ALASKA, HAWAII
AS WELL AS TERRITORIES.
THIS HAS ALLOWED FOR A PLETHORA
OF INFORMATION THAT HAS LED TO
HEALTH OUTCOMES, PATIENT
OUTCOMES, HEALTH LITERACY AND
DIVERSITY AND THE RESULT IS FOR
OUR ABILITY TO CENTER OVER 75
PAPERS AND PRESENTATIONS THAT
ARE ABOUT THE LIVED EXPERIENCE'
DEAF, DEAF BLIND, HARD OF
HEARING INDIVIDUALS AT A VARIETY
OF LEVELS.
MOST RECENTLY MY CENTER RECEIVED
A COLLABORATIVE AGREEMENT THAT
FOCUSED ON INCREASING HEALTH
EQUITY WITHIN DEAF, DEAF BLIND
AND HARD OF HEARING COMMUNITIES
RESPECTIVELY AND WE'VE RECEIVED
TWO SUPPLEMENTS THAT ALLOW FOR
US TO HIRE BLACK DEAF
INDIVIDUALS BOTH WHOM ARE
INTERESTED IN ATTENDING MEDICAL
SCHOOL.
THEY WILL BE ATTENDING AND BE
THE FIRST DEAF BLACK INDIVIDUALS
TO BECOME MEDICAL PHYSICIANS WHO
ARE USING SIGN LANGUAGE TO
COMMUNICATE WITH PATIENTS AND
PEERS.
THIS IS BEYOND EXCITING NOT ONLY
FOR THESE INDIVIDUALS BUT FOR US
AS A COMMUNITY AND I'M SO
GRATEFUL TO NIDCD FOR YOUR
SUPPORT.
I'D LIKE TO TAKE A FEW MINUTES
TO SHARE SOME OF THE TRAINING
AND RESEARCH CHALLENGES THAT
I'VE EXPERIENCED AND I WILL
SHARE SOME SUCCESSES.
THESE INCLUDE DEAF AND HARD OF
HEARING PEOPLE WITHIN SCIENCE
BEING A CHALLENGE FOR
HISTORICALLY UNTIL JUST RECENT.
I SHARE WHAT MY LIVED EXPERIENCE
WAS OVER THE PAST 20 YEARS AND
THE EFFORTS THAT I'VE DONE TO
INCLUDE DEAF AND HARD OF HEARING
INDIVIDUALS AND WE'VE CREATED AN
OBSERVATION LIST THAT I WOULD
LIKE TO SHARE WITH YOU.
WE NOTICED THAT NIDCD TRAINING
GRANTS HAD A SIGNIFICANT
EMPHASIS ON POSTDOCS AND ON
EARLY CAREER INDIVIDUAL
TRAINING.
SECONDLY THE DIVERSITY
SUPPLEMENT ALSO HAD AN 'EM FROM
SIX OR PREFERENCE TO INCLUDE --
* UNDERGRADS AND GRAD AND
POSTDOCS AND ONE OF THE
CHALLENGES WAS FOR BOTH OF THESE
SPECIFICS A LOT OF FACULTY LEVEL
INDIVIDUALS WERE UNEDUCATED IN
OR DID NOT KNOW ANY FAMILIARITY
WITH THESE PARTICULAR SUBJECT
MATTERS.
SO THERE WERE DEAF AND HARD OF
HEARING MEMBERS AT FACULTY LEVEL
WHO DID NOT HAVE OPPORTUNITIES
TO RECEIVE TRAINING PRIOR TO AND
THE REASON BEING IS BECAUSE ANY
INDIVIDUAL WHO COMES FROM A
MARGINALIZED COMMUNITY INCLUDING
FOLKS WHO CAN HEAR --
MARGINALIZED COMMUNITIES ARE
OFTEN CALLED TO TEACH OR TO DO
THINGS IMMEDIATELY AFTER THEIR
DOCTORATE IS RECEIVED.
BUT PRIOR TO OR POSTDOC THEY
DON'T HAVE ACCESS TO THESE
TRAININGS, ACADEMIC TEACHING AND
SERVICES THAT ALLOW FOR THEM TO
ADVANCE IN WAYS THAT WOULD
CONTRIBUTE.
OFTEN TIMES THEY ARE RELEASED OF
TEACHING RESPONSIBILITY AT A
TIME THAT THEY ARE UNABLE TO
APPLY FOR THESE FUNDING.
SO THEY ARE SEEN AS TOO ADVANCED
FOR THE FUNDING AND THEREFORE
IT'S A CHALLENGE FOR ME TO GET
INDIVIDUALS WHO WOULD BE
APPROPRIATELY MATCHED TO WORK
WITHIN THE FIELD OF SCIENCE THAT
YOU ARE DEAF AND HARD OF HEARING
INDIVIDUALS.
THERE IS ALSO A MISMATCH BETWEEN
DEAF AND HARD OF HEARING
CANDIDATES AND ELBILITY WHEN IT
COMES TO THE * CURRICULUM
REQUIREMENTS AND THE LAST POINT
IS THERE THERE IS A LIMITED
AMOUNT OF FUNDING SUPPORT AND
ACCESSIBILITY TO QUALITY,
ADMINISTRATIVE SUPPLEMENTAL
SUPPORT.
AND OFTEN TIMES THE MONIES THAT
WE RECEIVE ARE USED TO COVER
INTERPRETING SUPPORT RATHER THAN
SCIENCE AND ACCESSIBILITY
SERVICES MUST BE OF THE HIGHEST
QUALITY IN ORDER FOR US TO HAVE
ACCESS TO OUR RESEARCH.
SO THE LIMITED FUNDING THEN
BECOMES EVEN MORE SUBSTANTIALLY
LIMITED AND THE BUDGET
EXPERIENCE IS STRESSED BECAUSE
OUR FOCUS ENDS UP BEING ON
ACCESSIBILITY.
TODAY WE STILL SEE UNDER
REPRESENTATION OF DEAF AND HARD
OF HEARING RESEARCHERS WHO HAVE
INTERSECTIONAL AND INTERSECTING
IDENTITIES AND THOSE INDIVIDUALS
IF YOU LOOK ARE ORDINARY TIMES
IF NOT ALWAYS WHITE, MALE
PRESENTING INDIVIDUALS WHO
EXPERIENCE MUCH MORE SUCCESS IN
THE FIELD OF RESEARCH.
I'M VERY, VERY HAPPY TO SEE NIH
AND NIDCD COMMITTED TO
INTERSECTIONALITY AND DIVERSITY
WITHIN THE FIELDS OF SCIENCE AND
LOOK FORWARD TO THAT AMONG THE
YEARS TO COME.
THERE IS A LOT OF RESEARCH THAT
ALSO DOESN'T INCLUDE THE LIVED
EXPERIENCE OF DEAF COMMUNITIES.
BUT HAVE INTERSECTING IDENTITIES
IN THEIR WORK SO THAT NEEDS TO
INCREASE AS WELL IN ADDITION TO
GRASSROOTS DEAF AND HARD OF
HEARING FOLKS.
HERE I WOULD LIKE TO SHARE SOME
OF THE SUCCESSES.
WE HAVE GOTTEN FUNDING OVER THE
YEARS THAT HAS BEEN SPECIFIC TO
LANGUAGE, DEAF AND HARD OF
HEARING PEOPLE OUTCOME IN THEIR
HEALTH EXPERIENCES AND THOSE
STUDIES HAD ALLOWED FOR TOWSON
CREASE DIVERSE DEAF AND HARD OF
HEARING INDIVIDUALS IN THIS
RESEARCH.
BOTH FROM LINGUISTIC MINORITIES
AND MARGINALIZED COMMUNITIES.
THIS ALSO ALLOWS TO HELP
INCREASE DIVERSE PERSPECTIVES
FOR US AS RESEARCHERS.
AND ENHANCES THE PERSPECTIVES,
THE DESIGN AND IMPROVES QUALITY
OF RESULTS, STANDARDIZES -- THE
STRENGTHENING OF OUR RESEARCH
DESIGN AND ALLOWS FOR US TO
ENHANCE THOSE PERSPECTIVES.
GIVEN THE CURRENT LACK OF OR
SHORTAGE OF INVESTIGATORS WITH
INTERSECTING IDENTITIES I WOULD
LIKE TO SHARE A FEW
RECOMMENDATIONS FOR WORKING
WITHIN THOSE LIMITATIONS.
RIGHT NOW AND HOW WE CAN TRULY
SHIFT AND CHANGE THIS.
I WOULD ENCOURAGE FOR FUNDING TO
BE AN AD VOTE CAR SEE FOR
CO-CREATING AND CO-PRODUCING A
SCIENTIFIC COMMUNITY MODEL.
WHAT I MEAN BY THAT IS RATHER
THAN PUTTING THE LABOR ON THE
DESIGN TEAM INCLUDE COMMUNITIES
SO THAT WE TRULY PARTNER AND
HELP DIVERSITY PERSPECTIVES
AMONG OUR RESEARCH.
IN ADDITION TO THAT IN DEAF AND
HARD OF HEARING FIELDS WE OFTEN
SEE GROWTH IN INDIVIDUALS WHO
ARE GOING TO GRAD SCHOOL AND
MEDICAL SCHOOL CURRENTLY WHICH
IS PHENOMENAL AND I'M ALSO
NOTICING THAT THERE ARE NOT MANY
DEAF AND HARD OF HEARING
INDIVIDUALS WHO ARE INTERESTED
IN RESEARCH AS MUCH AS THEY ARE
INTERESTED IN TRAINING.
7 IT SEEMS AS THOUGH THE
PRACTICE AND TRAINING IS MUCH
MORE ATTRACTIVE TO THOSE
INDIVIDUALS AT THIS MOMENT IN
TIME.
AND I WONDER IF IT'S BECAUSE OF
THE DIFFICULTY TO OBTAIN FUNDING
FOR THE REASONS THAT I MENTIONED
PRIOR TO.
SO I WOULD CONSIDER ALLOWING FOR
CLINICIANS THAT ARE PRIMARILY
PRACTITIONERS TO PARTICIPATE AS
THOSE COLLABORATE OARS SO WE CAN
GET THOSE PERSPECTIVES WHILE
THEY ARE PURSUING WHAT THEY
TRULY DESIRE.
*.
OUR EMPLOYMENT AND WORKFORCE
WITH DEAF AND HARD OF HEARING
INDIVIDUALS NEEDS TO ENHANCE AND
ALSO PLEASE CONSIDER SUPPORTING
JUNIOR AND MID-CAREER FACULTY,
SENIOR CAREER INDIVIDUALS WHO
MISSED OUT ON THE EARLY
OPPORTUNITIES.
IF YOU WOULD CONSIDER INVESTING
IN THEM TO ALLOW FOR MORE
SUCCESSES.
FOR DEAF AND HARD OF HEARING
COMMUNITIES WE'RE A VERY SMALL
COMMUNITY WHICH MANY OF YOU
ALREADY KNOW.
THE PEOPLE WHO ARE DOING THE
RESEARCH ARE EVEN SMALLER.
IT'S A VERY, VERY WIDE WIDE --
NOT JUST UNITED STATES BUT
INTERNATIONALLY BASED MICROCOSM.
SO CONSIDER A MENTORING NETWORK
ON A NATIONAL AND INTERNATIONAL
LEVEL TO WORK TOGETHER AND
THEREFORE CREATE MENTORSHIP
OPPORTUNITIES FOR YOUNGER AND UP
AND COMING FOLKS.
AND RELATED TO MY FIRST POINT
BECAUSE IT IS SO WIDESPREAD
GEOGRAPHICALLY THAT DEAF
COMMUNITIES LIVE IT IS DIFFICULT
FOR INPERSON MENTORSHIP TO
HAPPEN.
SO PLEASE CONSIDER MIXED IN
PERSON AND REMOTE MENTORSHIP
MODELS ESPECIALLY FOR THOSE IN
RURAL AREAS.
AND MY FINAL POINT IS TO
RECOMMEND ADMINISTRATIVE FUNDING
TO SUPPORT ACCESSIBILITY NEEDS
INCLUDING CAPTIONING,
INTERPRETERS, AND NSF.
AN FED THAT FOCUSES ON
ADMINISTRATIVE USE FOR
ACCESSIBILITY RATHER THAN
EXPERIENCING OUR BUDGET TO BE
MINIMIZED BECAUSE OF ACCESS AND
THAT CONCLUDES MY PRESENTATION
TODAY.
THANK YOU.
>> THANK YOU SO MUCH POORNA.
THAT WAS VERY, VERY INFORMATIVE
AND I'M SURE THAT SOME ON
COUNCIL WILL HAVE QUESTIONS.
SO WE HAVE A LITTLE BIT OF TIME
FOR THAT.
AND I WOULD LOVE TO HAVE ANYONE
WHO WOULD LIKE TO ASK A QUESTION
OF EITHER POORNA OR TILAK TO DO
SO.
GINGER, DO YOU WANT TO SWITCH TO
THE ZOOM VIEW?
SO WE CAN SEE EVERYBODY?
>> IF ANYONE WANTS TO COME IN
AND ASK A QUESTION PLEASE SPEAK
UP BECAUSE I CANNOT SEE YOU IN
THIS VIEW.
MAYBE I'LL START -- BY ASKING A
QUESTION.
POORNA, I KNOW THAT YOU'RE THE
CHIEF RESEARCH OFFICER FOR
GALLAUDET AND I'M WONDERING WHAT
KINDS OF PROGRAMS YOU'RE WORKING
ON THERE TO INCREASE THE
RESEARCH CAPABILITIES OF FACULTY
AT GALLAUDET?
>> AT GALLAUDET WE'RE CURRENTLY
WORKING ON PROVIDING MORE GRANT
WRITING SUPPORT TO OUR FACULTY.
WE RECENTLY STARTED A RESEARCH
FUNDAMENTALS SERIES WORKSHOP.
TO INCREASE TRAINING UNDERGRADS
STUDENTS, GRADUATE STUDENTS WHO
ARE ALREADY WORKING IN LAB
ENVIRONMENTS.
WE ALSO GOT CONSIDERATION FROM
THE FACULTY AT GALLAUDET --
BECAUSE A LOT OF FACULTY HAVE
GRANTS A VARIETY OF THEM AND NIH
-- THERE IS A LOT OF FUNDING
WHICH IS WONDERFUL BUT THEY ARE
EXPERIENCING DIFFICULTY IN
HIRING QUALIFIED RESEARCHERS
STAFF.
AND WE'RE SEEING THAT DEAF AND
HARD OF HEARING PEOPLE IN THE
POLLED DON'T HAVE THE RESEARCH
SKILLS THAT THEY NEED ALONG WITH
THE EXPERIENCE THAT IS REQUIRED.
SO TO BE QUALIFIED FOR A JOB --
* ALONG WITH RESEARCH STAFF IS
THE FEEDBACK THAT WE'VE RECEIVED
FROM THE GALLAUDET FACULTY
COMMUNITY TO ENHANCE TRAINING
FOR STUDENTS SO THAT THEY BECOME
QUALIFIED AS RESEARCH WORKERS
ONCE THEY GRADUATE.
THEN THEY ARE ALLOWED TO WORK IN
THE LABS AND GET SUPPORT TO THE
PI.
SO, THAT IS WHAT WE'RE FOCUSING
ON RIGHT NOW.
WE'RE ALSO PLANNING TO ALLOW FOR
A RESEARCH SUMMIT THAT PRESIDENT
CORDANO INCLUDED TO PROVIDE
FUNDING TO SUPPORT THAT FOR NEXT
YEAR TO SPECIFICALLY BRING IN
DEAF, HARD OF HEARING SIGNING
RESEARCHERS TO THE UNIVERSITY
SETTING TO TALK ABOUT WHAT THE
REAL ISSUES ARE, WHAT THE
CHALLENGES ARE IN THE FIELD AND
WHAT EVERYONE IS DOING TO
ADDRESS THOSE GAPS THAT ARE
IMPACTING THE LIVES OF DEAF AND
HARD OF HEARING INDIVIDUALS.
THE GOAL OF THAT SUMMIT IS THAT
WE EXPECT TO DEFINITELY A VERY
STRONG NETWORK OF COLLABORATORS
WHO WILL THEN BECOME MENTORS TO
OUR STUDENTS AT THE UNIVERSITY.
SO WE'RE GOING TO BE SENDING
THEM OUT TO THE LABS FROM THAT
SUMMIT.
SO THOSE ARE JUST A FEW THINGS
THAT WE'RE DOING AT GALLAUDET
CURRENTLY
>> THAT SOUNDS FANTASTIC.
CONGRATULATIONS ON ALL OF YOUR
WORK.
THAT IS WONDERFUL.
I THINK LAUREL CARNEY HAS A
QUESTION.
>> HI.
CAN YOU POINT OUR COMMUNITY TO
RESOURCES GUIDANCE -- RELATED TO
PROVIDING SUPPORT FOR PhD
STUDENTS IN BIOMEDICAL SCIENCES?
I WONDER IF THERE ARE ANY
DOCUMENTS OR JUST GENERAL TIPS
YOU CAN PROVIDE THAT COULD BE
PUBLISHED ON THE WEBSITES FOR
EXAMPLE THAT ARE BEING DEVELOPED
BY -- AS PART OF THE DEI
EFFORTS.
THESE WOULD BE VERY USEFUL TO
PROGRAMS WHO NEED TO TAP INTO
THOSE RESOURCES FOR THE FIRST
TIME.
WITH A NEW STUDENT FOR EXAMPLE.
>> CAN I START?
THE FIRST THING -- AS MANY OF
YOU KNOW THE UNIVERSITY OF --
THE PROGRAM -- THEY HAVE THE
WEBSITE.
WHAT DO YOU CALL IT?
--
>> HOW COULD I PI MENTOR
SOMEBODY IN THE LAB?
AND I'M NOT TALKING ABOUT
RECRUITMENT.
BUT HOW PEOPLE CAN PROVIDE -- --
I HAVE NOT GOT ANY INFORMATION.
>> INFORMATION -- I AGREE BUT
THE PROBLEM -- THAT TECHNOLOGY
-- IT'S HARD TO KEEP UPDATING.
>> THANKS.
>> POORNA, DO YOU EVER A
COMMENT?
>> I WOULD LIKE TO ADD TO THAT
YES.
THE AMERICAN MEDICAL
PROFESSIONALS WITH HEARING LOSS
AMFL THEY HAVE A REALLY NICE *
SORT OF RESOURCE LIST IF YOU
WILL FOR FOLKS WHO ARE
INTERESTED IN GOING INTO THE
HEALTH CARE PROFESSION.
THEY HAVE A NETWORKING PROGRAM
WHERE YOU CAN SIGN UP AND THEY
WILL MATCH YOU WITH A MENTOR.
WHO HAS A SIMILAR HEARING LOSS,
SIMILAR INTEREST AND I REALIZE
THAT NIDCD CREATED SOMETHING
SEVERAL YEARS BACK.
AND I DON'T KNOW WHAT BECAME OF
THAT.
I DO KNOW THAT THERE WAS A
DATABASE THAT WAS DEVELOPED AND
I'M NOT SEEING THAT BEING
AMPLIFIED.
SO IT WOULD BE NICE TO BRING
THAT BACK AS A RESOURCE SO THAT
WE CAN GARNER MATCHES FOR PEERS
WHO ARE SCIENTISTS IDENTIFIED AS
AN INDIVIDUAL WITH HEARING LOSS
WITH RESEARCHERS.
>> THANK YOU.
NEXT WE HAVE A QUESTION FROM
RICHARD.
>> HI.
THANK YOU BOTH FOR SUCH AN
EXCELLENT AND INTERESTING TALKS.
TILAK, I HAVE A QUESTION FOR
YOU.
YOU DISCUSSED THE ISSUES AND
CHALLENGES OF PEOPLE LEARNING ON
THE LAYER COME GEE AND OTHER --
* MEDICAL PROFESSIONS AND IF
THEY HAVE HEARING LOSS.
ARE THERE ANY RESOURCE THAT'S
YOU MIGHT HAVE AVAILABLE FOR
TECHNOLOGIC KELSO LOSINGS TO
MAKE * OPERATING ROOMS MORE
ACCESSIBLE AND GRAND ROUNDS.
I'M CURIOUS AS TO WHAT HAS BEEN
DONE TO TRY TO MAKE THESE
ENVIRONMENTS ACCESSIBLE FOR
PHYSICIANS WITH HEARING LOSS.
>> A VERY GOOD QUESTION.
ACTUALLY IN 2010 MY COLLEAGUE --
WE HAD A MEDICAL STUDENT WITH
HEARING LOSS -- AND WE DECIDED
HE WANTED TO TRY -- -- AT THAT
TIME -- -- HE WOULD PROJECT IT
TO A LAPTOP COMPUTER.
AND AND ---I CAN NEVER PRONOUNCE
THAT WORD.
-- -- WE HAVE -- -- BLUE TOOTH
MICROPHONE.
AND IF YOU DO TWO THINGS.
CLEAR SPEECH AND ALSO -- --
MICROPHONE AND HAVE CAPTIONING
IN THE OR.
ACTUALLY WHAT I'M PROPOSING NOW
-- IN A WET LAB -- AN ANIMAL
SURGICAL LAB AND SEE IF IT WORKS
IN PRINCIPLE AND THEN THINK
ABOUT HOW TO DEPLOY THAT .
OKAY.
THANK YOU.
>> AND TILAK, I WAS WONDERING
MAYBE I CAN WRITE YOU AND GET
THE REFERENCE FOR THAT ARTICLE?
>> OKAY.
>> GOOD.
ALBERTO HAS A COMMENT.
>> -- I WANT TO COMMENT THE
DIVERSITY SUPPLEMENT PROGRAM DO
SUPPORT ALL OF THE WAY TO THE
FACULTY LEVEL.
THE HEART OF THE PROGRAM IS THE
NEED FOR -- TRAINING BUT WE
SUPPORT FACULTY.
AND ALSO WE PROVIDE -- ENHANCING
THE COMMUNICATION IN THE LAB AND
FOR THE CANDIDATE TO BE ABLE TO
COMMUNICATE WITH THE PIs.
THAT'S AN OPPORTUNITY THAT IS
THERE.
THANK YOU.
>> GREAT.
THANK YOU, ALBERTO.
I WONDER AS A LAST QUESTION
BECAUSE I DON'T SEE ANYBODY ELSE
WITH THEIR HAND RAISED IF THE
VIRTUAL ENVIRONMENT IS ANY
EASIER IN TERMS OF GRAND ROUNDS
THAT RICHARD WAS MENTIONING.
>> YES.
>> IS THE VIRTUAL ENVIRONMENT
SUCH AS THIS -- IS THIS EASIER
OR MORE DIFFICULT?
>> THE TECHNOLOGY -- -- IF YOU
TOLD ME WE WOULD HAVE AUTOMATIC
CAPTIONING -- THE TECHNOLOGY HAD
IMPROVED.
BECAUSE OF THAT ALONE AND ALSO
BECAUSE OF DEEP LEARNING AND
MACHINE LEARNING.
BUT COMPARED AUTOMATIC
CAPTIONING WITH HUMAN
CAPTIONING.
HUMAN CAPTIONING IS MUCH QUICKER
AND POTENTIALLY MORE ACCURATE.
-- HYBRID CAPTIONING -- WE NOW
HAVE -- TO ACCOMMODATE THAT.
THE VIRTUAL -- CAPTIONING I
THINK IS GOING TO BE THE NORM IN
THE NEXT TWO TO THREE YEARS.
I'M A NERD ANY WAY.
>> JOIN THE CLUB.
>> IF I MAY BEFORE YOU ASK A
QUESTION -- THANKS SO MUCH.
I JUST WANTED TO ADD TO
DR. RATNANATHE'S COMMENT ABOUT
OFFERING PERSPECTIVES FOR PEOPLE
WHO HAVE SENSORY DISABILITIES AS
WELL.
WHEN YOU LOOK AT A ZOOM PLATFORM
IT'S VERY HEAVILY AUDIO BASED.
IF YOU MAY NOT REALIZE -- IF A
PERSON RAISES THEIR HAND MY
SCREEN AUTOMATICALLY SHIFTS AND
I LOSE ACCESS TO THE
INTERPRETER.
SO UNLESS I'M GIVEN SPECIFIC
PRIVILEGES ON MY END I'M
AUTOMATICALLY MARGINALIZED AS A
USER OF SIGN LANGUAGE.
THE RECORDINGS OFTEN TIMES WILL
SHOW THE SPEAKER VIEW AND WILL
NOT SHOW THE INTERPRETER WHICH
IS WHY WE ALWAYS ASK FOR
SPOTLIGHTING WHICH IS WHY WE
ALWAYS ASK FOR PARTICULAR NEEDS
WHICH OFTEN TIMES PEOPLE DON'T
KNOW.
IF THE CAPTIONS ARE NOT RECORDED
THEN WE HAVE TO TURN ON ANOTHER
CAPTIONING PLATFORM ON OUR END
WHICH IS OFTEN TIMES YouTube
AUTO CAPTIONS AND THOSE ARE NOT
RELIABLE AT ALL.
SO IN ORDER TO BE FULLY
ACCESSIBLE FOR FOLKS WHO HAVE
CENSOR VERY DISABILITIES A LOT
MORE CONSIDERATION HAS TO OCCUR.
>> THANK YOU VERY MUCH FOR THOSE
COMMENTS.
>> THANK YOU SO MUCH FOR THESE
VERIFY IN SIRI -- INSPIRING AND
FASCINATING TALKS.
AND I WONDER -- *.
DO YOUR INSTITUTIONS PARTNER
WITH OTHER UNIVERSITIES AND
INSTITUTIONS SUCH THAT THERE
WOULD BE MORE DECENTRALIZED --
OF RESEARCH TRAINING FOR
RESEARCH STAFF?
THE PARTICULAR PROBLEM THAT --
POORNA MENTIONED ACTUALLY SEEMS
ALMOST INEVITABLE UNLESS WE --
ACTUALLY TRAIN -- I'VE
ENCOUNTERED DEAF AND HARD OF
HEARING STUDENTS.
AND GRADUATE STUDENTS.
AND I KNOW IT'S VERY HARD FOR
THEM TO STAY IN RESEARCH IN THE
LAB PARTICULARLY.
BECAUSE OF ALL OF OF THE OBVIOUS
PROBLEMS.
SO PERHAPSHI
TRAINING BY PARTNERING WITH
INSTITUTIONS AROUND THE COUNTRY.
PERHAPS JUST HALF A DOZEN TO
START WITH.
TO HELP THEM DEVELOP THE TOOLS
FOR -- REACHING AND SUPPORTING
AND TRAINING THOSE STUDENTS.
>> CAN I GO FIRST.
>> DECENTRALIZE -- --
PARTICULARLY THE PANDEMIC --
WITH THE GRADUATE STUDENT IN MY
DEPARTMENT WHO DROVE -- WHEN I
TOLD HIM DO YOU USE AUTOMATIC
CAPTIONS -- THE GRADUATE STUDENT
-- WE HAVE 450 GRADUATE STUDENTS
-- THEY -- AUTOMATIC CAPTIONS --
AND SO FORTH.
AND I TRY TO PROMOTE THAT
DOWNTOWN AND ACROSS THE CAMPUS
THAT THAT IS HOW YOU DO IT.
10 OF THOSE GRADUATE STUDENTS
DID NOT HAVE HEARING LOSS.
THEY HAD OTHER NEURODIVERSE --
>> POORNA.
>> WHAT YOU'VE ACTUALLY PROPOSED
GIVE ME SOME FOOD FOR THOUGHT
AND I WOULD LIKE TO SHARE THIS.
PARTNERSHIPS AND COLLABORATION
COULD WORK WELL IF YOU ALLOW FOR
INDIVIDUALS WHO ARE DEAF AND
HARD OF HEARING TO HAVE A HOME
IN ONE OF THOSE INSTITUTIONS.
SO FOR EXAMPLE IF YOU HAVE A
GOOD NUMBER OF DEAF AND HARD OF
HEARING MENTORS, PEERS IN THAT
PARTICULAR INSTITUTION.
AND ALLOW FOR THEM TO TRAVEL TO
OTHER UNIVERSITIES TO HAVE A
VARIETY OF EXPERIENCES.
THAT WOULD BE THE MODEL THAT I
WOULD REQUEST.
WHEN APPLIED FOR MY F31 THAT IS
WHAT I -- HAD AND I NEEDED TO
TRAVEL
AND IT WAS NOT POSSIBLE AT THAT
TIME TO HAVE THE VIRTUAL MEANS
THAT WE HAVE NOW.
BUT IN ORDER TO MEET THE GIVEN
LIMITATIONS OF DEAF AND HARD OF
HEARING FOLKS NATIONWIDE AND
ALLOW FOR HIGH QUALITY TRAINING
THAT SUPPORT NEEDS TO HAPPEN IN
MULTIPLE INSTITUTIONS TO ALLOW
FOR THE COMPLIMENTARY
EXPERIENCE.
AND THAT WOULD INCREASE OUR
WORKFORCE.
>> THANK YOU.
AND ALBERTO NOTES IN THE CHAT
THAT --
>> I WAS JUST GOING TO SAY THAT.
THANK YOU SO MUCH.
ABSOLUTELY.
OUR NEW DIVERSITY TARGETED R25
OFFERS THAT PARTNERSHIP.
THANK YOU.
>> THANK YOU.
THANK YOU BOTH FOR ALL OF YOUR
COMMENTS AND YOUR INSIGHTS.
IT'S SO VALUABLE FOR US TO HEAR
FROM YOU.
AND I APPLAUD YOU AND ALL OF
YOUR EFFORTS.
IT'S TRULY INSPIRATIONAL.
SO I THINK WE'LL BRING THIS
TOPIC TO A CLOSE.
AND WELCOME MIKE LAUER FOR OUR
NEXT AND LAST PRESENTATION.
THANK YOU.
SO -- DR. LAUER IS NIH'S DEPUTY
DIRECTOR FOR EXTRAMURAL
RESEARCH.
HE SERVES AS THE PRINCIPLE
SCIENTIFIC LEADER AND ADVISER TO
THE NIH DIRECTOR ON THE NIH
EXTRAMURAL RESEARCH PROGRAM.
TO KEEP UP WITH THE LATEST
TOPICS CHECK OUT HIS OPEN MIC
BLOG WHICH I DO ROUTINELY --
OPEN AND READ BECAUSE IT'S
ALWAYS SO INTERESTING AND IT
AIMS TO CONNECT WITH
STAKEHOLDERS AND PROVIDE THE NIH
PERSPECTIVE ON A MULTITUDE OF
TOPICS.
MOST OF YOU KNOW THAT THE NIH
HAS RELEASED SOME NEW POLICIES
ON DATA SHARING AND I INVITED
MIKE HERE TO GIVE US MORE
DETAILS ABOUT THIS NEW DATA
SHARING POLICY.
>> WELCOME, MIKE.
>> GREAT.
MANY THANKS, AND I MUST SAY I
GREATLY ENJOYED THE PREVIOUS
DISCUSSION.
IT WAS VERY INTERESTING.
ARE YOU SEEING THE SLIDES?
>> YES.
WE ARE.
IT'S GOOD.
>> SO THANK YOU VERY MUCH FOR
THE OPPORTUNITY TO BE HERE
TODAY.
I'M GOING TO BE TALKING ABOUT
OUR DATA MANAGEMENT AND SHARING
POLICY WHICH WE'RE NOW IN THE
PROCESS OF IMPLEMENTING.
THIS WAS VERY MUCH A TEAM
EFFORT.
WANT TO RECOGNIZE DR. LARA
JORGENSON.
ALONG WITH A NUMBER OF
COLLEAGUES.
DATA SHARING IS NOT A NEW IDEA.
AND THE IDEA THAT GOVERNMENT
FUNDED RESEARCH RESEARCHERS
SHOULD SHARE THEIR DATA IS ONE
THAT COMES FROM THE HIGHEST
LITERALLY THE HIGHEST LEVELS OF
GOVERNMENT.
WHEN -- PRINCE EDWARDS BIDEN WAS
VICE PRESIDENT -- HE PLAYED A
MAJOR ROLE IN THE LAUNCHING OF
THE SO-CALLED CANCER MOONSHOT.
THE 21st CENTURY CURES ACT
WAS PASSED WITH OVERWHELMING
BIPARTISAN SUPPORT IN
DECEMBER 2016.
IN THERE IS A PROVISION THAT
STATES THAT THE NIH DIRECTOR HAS
THE AUTHORITY TO REQUIRE DATA
SHARING FOR ALL GRANTS
RECIPIENTS.
DATA SHARING POLICIES ARE NOT
NEW.
AND GO BACK EVEN FARTHER THAN
THE MOONSHOT OR THE 21st
CENTURIES CURE ACT.
THE CURRENT POLICY GOES BACK TO
2003.
IT A -- APPLIES TO OUR GRANTS
THAT USE MORE THAN $500 THAT YOU
A YEAR.
AND YOU'RE FAMILIAR WITH SOME OF
THE OTHERS.
THE 2014 GENOMIC DATA SHARING.
AND IN 2016 WE ISSUED
REQUIREMENTS REGARDING REQUIRED
REGISTRATION AND REPORTING OF
CLINICAL TRIALS.
AND A VARIETY OF OTHERS AS WELL
THAT YOU MAY BE FAMILIAR WITH
INCLUDING THE AUTISM DATA
SHARING POLICY.
SO SINCE 2016 WHEN THE 21st
CENTURY CURES ACT WAS PASSED
THERE HAS BEEN A LONG ARC OF
ITERATION.
MUCH WAS LED BY MY COLLEAGUES.
POLICIES -- A POLICY WAS
DRAFTED.
IT WAS PUT OUT FOR PUBLIC
REVIEW.
WE RECEIVED EXTENSIVE PUBLIC
COMMENTS AND HAD THE OPPORTUNITY
TO RESPOND TO THEM.
7 AND IN ADDITION THERE WERE A
VARIETY OF OTHER WORKING GROUPS,
CONSULTATIONS THAT HAPPENED AS
WELL.
SO THE POLICY -- ITSELF WILL BE
IMPLEMENTED IN JANUARY OF 2023.
NOT THAT LONG FROM NOW AND THERE
ARE ESSENTIALLY TWO BASIC
REQUIREMENTS.
THE FIRST IS THAT WITH ANY GRANT
APPLICATION THAT INVOLVES THE
LIKELY GENERATION OF DATA THERE
NEEDS TO BE A PLAN.
SO THERE NEEDS TO BE A PLAN THAT
DESCRIBES DATA MANAGEMENT AND
DATA SHARING.
AND THIS WILL BE APPLICABLE TO
ALL NIH FUNDED RESEARCH.
7 SO PART ONE IS THAT THERE
NEEDS TO BE A PLAN SUBMITTED
WITH THE APPLICATION.
PART TWO IS THAT ONCE THAT PLAN
IS APPROVED IT BECOMES A
CONDITION OF AWARDS AND GRANT
RECIPIENTS WILL BE EXPECT TO BE
COMPLIANT WITH THEIR OWN PLAN.
THIS BECOMES EFFECTIVE ON
JANUARY 25,2023.
NOW THE PLAN -- ALLOWS A GREAT
DEAL OF FLEXIBILITY AND THIS IS
QUITE DELIBERATE.
BECAUSE WE KNOW THERE IS A WIDE
RANGE OF SCIENCE THAT NIH FUNDS
AND WHAT MIGHT BE APPLICABLE TO
MOLECULAR BIOLOGY RESEARCH MIGHT
BE DIFFERENT TO A PHASE TWO OR
PHASE III CLINICAL TRIAL.
SOME GENERAL PRINCIPLES HERE.
ONE IS THAT THE DEFAULT PRACTICE
SHOULD BE THE DATA SHARING IS
MAXIMIZED.
WE UNDERSTAND THAT THERE ARE
REASONS WHY DATA CANNOT BE FULLY
SHARED AND THAT IS SOMETHING
THAT WOULD BE INCORPORATED AS
PART OF THE PLAN.
WE EXPECT THAT DATA SHARING WILL
BE DONE IN A RESPONSIBLE WAY.
AND THAT INCLUDES PROTECTION OF
PRIVACY RIGHTS AND
CONFIDENTIALITY AS WELL AS
OBSERVANCE OF ALL APPLICABLE
LAWS AND REGULATIONS AND
POLICIES.
PART OF THE IDEA OF HAVING IT
COME IN AT THE TIME OF
APPLICATION IT'S PLANNED AT ALL
STAGES OF THE RESEARCH PROCESS.
WE UNDERSTAND THAT THINGS CAN
CHANGE OVER TIME.
SO HERES A GENERAL LOOK AT HOW
THE PROCESS WILL WORK.
WE'RE STILL IN THE PROCESS OF
FINALIZING IT SO THIS MAY NOT BE
EXACTLY WHAT THE FINAL PODGE
WILL LOOK LIKE.
THE PLAN WILL BE SUBMITTED WITH
THE APPLICATION.
THERE WILL BE TWO PARTS.
ONE IS A BRIEF DESCRIPTION OF
THE PLAN AND THE BUDGET
JUSTIFICATION SECTION.
THAT IS DELIBERATE BECAUSE WE
RECOGNIZE THAT THE DATA SHARING
COST MONEY.
AND SO WE WANT YOU AND YOUR
GRANTS OFFICIALS TO BE THINKING
HARD ABOUT HOW MUCH MONEY THIS
MAY COST.
MAKE SURE THAT IS APPROPRIATELY
INCORPORATED INTO THE BUDGET.
th ATTACHMENT -- WE VIEW AS
ADMINISTRATIVE ITEM.
A VERY IMPORTANT ADMINISTRATIVE
ITEM BUT IT'S NOT SOMETHING THAT
ORDINARILY WILL BE LOOKED AT BY
PEER REVIEWERS.
BUT RATHER WILL BE ASSESSED BY
OUR STAFF.
PLANS CAN BE REVISED OVER TIME.
JUST LIKE ANYBODY ELSE IN LIFE.
WE RECOGNIZE THAT PLANS CAN
CHANGE.
AND THAT IS ALL PERFECTLY FINE.
AS LONG AS THAT IS DONE IN CLOSE
COORDINATION WITH NIH STAFF.
THE PLAN ITSELF ONE IT IS AGREED
UPON WILL BE INCORPORATED INTO
THE TERMS AND CONDITIONS OF THE
AWARD AND THEN MONITORED OVER
TIME.
NOW, ONE OF THE BIGGEST
QUESTIONS THAT WE GET IS WHAT
DATA NEEDS TO BE SHARED.
SO WE USE A DEFINITION OF
SCIENTIFIC DATA WHICH IS
SCIENTIFIC DATA IS RECORDED
FACTUAL MATERIAL TO VALIDATE
RESEARCH FINDINGS.
NOW EXACTLY WHAT THAT IS DEPENDS
UPON THE RESEARCH THAT IS BEING
DONE.
DATA SHARING DOES NOT INCLUDE
LABORATORY NOTEBOOKS, CASE
REPORT FORMS FOR EPIDEMIOLOGY
STUDIES OR TRIALS OR PHYSICAL
OBJECTS.
THE GENERAL IDEA IS THAT DATA
SHOULD BE AVAILABLE AT THE TIME
OF PUBLICATION AND FOR THOSE
DATA THAT DO NOT GET PUBLISHED
THEY SHOULD BE MADE AVAILABLE AT
THE END OF AN AWARD.
SO HOW DO WE GET TO WHERE WE'RE
GOING?
THERE IS A LOT OF MATERIAL OUT
RIGHT NOW.
I'M GOING TO SHARE SOME OF THAT
WITH YOU.
THANK YOU DEB FOR THE PLUG ON
OPEN MIC AND I WANT TO PLUG MY
COLLEAGUE DR. LARRY JORGENSON.
WE HAVE ALREADY PUT OUT A
WEBINAR AND AN FAQs AND THERE
WILL BE MORE COMING OVER THE
COURSE OF THE NEXT FEW MONTHS.
WE'VE PUT OUT DRAFT GUIDANCE FOR
RESEARCHERS WHO ARE WORKING WITH
-- PARTICIPANTS.
WE WILL BE PUTTING OUT
ADDITIONAL SUPPLEMENTAL
INFORMATION.
COST CONSIDERS AND PRIVACY
PROTECTION.
WE'RE WORKING ON SAMPLE PLANS.
WE IMAGINE THAT AS TIME GOES ON
AND WE START TO SEE SOME
OUTSTANDING SAMPLE PLANS THAT WE
WILL PUT THOSE UP OR WE'LL PUT
THOSE UP WITH APPROPRIATE
REVISIONS OR REDACTIONS.
MANY OF YOU ARE AWARE THAT WE'VE
HAD A GENOMIC SHARING PLAN.
WE'RE NOT GOING TO BE ASKING
PEOPLE TO SUBMIT TWO PLANS.
ONE FOR GENOMICS AND ONE IN
DATA. ONLY ONE.
WE'RE WORKING ON HARM O --
HARMONIZING.
*.
WE WILL BE ASSESSING HOW WELL
THINGS ARE GOING.
WHAT WAS GOING WELL AND WHAT IS
NOT.
AND ONE VERY INTERESTING TOPIC
-- IS HOW CAN WE MAKE DATA
SHARING MORE PART OF THE NATURE
AND CULTURE OF SCIENCE?
JUST LIKE PUBLICATION IS PART OF
THE NATURE AND CULTURE OF
SCIENCE.
WE ALL WANT TO PUBLISH OUR WORK.
WE WOULD LIKE TO SEE SOMETHING
SIMILAR FOR DATA SHARE.
IN ORDER TO LEARN MORE I
ENCOURAGE YOU TO GO TO THIS
WEBSITE.
AN EASY URL TO REMEMBER.
SHARING.NIH.GOV.
THIS WAS A LABOR OF LOVE AND WE
WOULD APPRECIATE YOUR FEEDBACK
ABOUT WHAT IS MISSING SO THAT
WILL HELP US MAKE THIS BETTER.
THIS NOT ONLY LOOKS AT THE DATA
SHARING POLICY.
IT ALSO INCLUDES GENOMIC DATE &
CLINICAL TRIALS.
THERE IS A RESOURCE BY WHICH YOU
CAN FIGURE OUT WHICH POLICIES
MIGHT APPLY TO YOUR SPECIFIC
GRANT.
THE GENERAL STRUCTURE OF THE
SITE IS THAT WE COVER THE DATA
MANAGEMENT AND SHARING POLICY
WHICH IS THE MAIN THING COMING
UP NOW.
WE HAVE A LOT MORE INFORMATION
NOW IN ONE PLACE.
OTHER SHARING POLICIES THAT MAY
BE HELD BY VARIOUS ICs.
WE HAVE A SECTION ON ACCESSING
DATA SO FOR PEOPLE WHO ARE
INTERESTED IN ACCESSING DATA
THAT OTHER PEOPLE ARE SHARING .
AND THEN WE HAVE SOME OTHER
MISCELLANEOUS MATERIALS.
WE HAVE RESOURCES THAT ARE
AVAILABLE HERE.
SUCH AS A DECISION TOOL WHERE
YOU CAN FIGURE OUT WHAT POLICIES
MIGHT APPLY TO YOUR SPECIFIC
RESEARCH.
INFORMATION ON STEP-BY-STEP
INSTRUCTIONS ON CERTAIN ITEMS
THAT NEED TO BE COMPLETED.
FOR THE DATA MANAGEMENT AND
SHARING POLICY WE HAVE BIG
SECTIONS HERE ON PLANNING AND
BUDGETING.
THIS IS HOW DO YOU PUT YOUR PLAN
TOGETHER AND WHAT TYPES OF
THINGS SHOULD YOU BE PUTTING IN?
WE HAVE DESCRIPTIONS HERE ON
BEST PRACTICES.
WE ALSO HAVE INFORMATION HERE
OFF DATA REPOSITORIES.
AND WHEN THE ORIGINAL POLICY
CAME OUT IN OCTOBER OF 2020 WE
INCLUDED IN THERE SOME
INFORMATION ABOUT WHAT
CONSTITUTES A HIGH QUALITY
REPOSITORY.
WE PROVIDE INFORMATION ON IC
SPECIFIC REPOSITORIES AS WELL AS
GENERAL REPOSITORIES THAT YOU
MIGHT FIND USEFUL.
NOW THE WEBSITE REFLECTS THE
FACT THAT WE'RE IN A PERIOD OF
TRANSITION.
FOR EXAMPLE, IF YOU GO TO THE
DATA MANAGEMENT AND SHARING TAB
BUTTON THERE YOU'LL GET THIS.
AND SO YOU CAN GET INFORMATION
-- BEFORE JANUARY OF 2023.
THAT IS WHAT IS RELEVANT NOW AND
FOR APPLICATIONS ON OR AFTER
JANUARY 25, 2023 WHICH IS WHEN
THE NEW POLICY GOES INTO PLAY.
EVENT.E A PAGE ON NEWS AND
WE HAVE COMING UP.
THERE IS A WEBINAR COMING UP
NEXT TUESDAY.
FROM THE NATIONAL LIBRARY OF
MEDICINE POLICY AND RECAP AND --
Q&A.
SO WE URGE YOU TO PLEASE SHARE
THIS WITH YOUR COLLEAGUES AND
STAFF.
THERE ARE A LOT OF QUESTIONS.
AND WE'RE TRYING TO SYNTHESIZE
THEM AHEAD OF TIME.
ONE IS -- WE HEAR CRITICISMS
THAT THE POLICIES ARE TOO
FLEXIBLE AND THEN WE ALSO HEAR
THAT IT'S TOO PRESCRIBED.
SO AS MUCH AS POSSIBLE WE'RE
TRYING TO PROVIDE GUIDANCE ON
THAT.
WHERE IS THE MONEY COMING FROM?
THE MONEY IS -- WE RECOGNIZE
THAT PROPER MANAGEMENT AND
SHARING OF DATA COST MONEY.
SO SOME OF THE COSTS ARE
ALLOWABLE AND THEN THERE ARE
OTHERS COVERED BY IN DIRECT COST
AND OUR WEBSITE HAS SOME
INFORMATION ON THAT.
WILL THE PLANS BE MADE PUBLIC?
YES.
WE WILL BE POSTING DATA
MANAGEMENT SHARING PLANS
PROBABLY ON REPORTER.
ALTHOUGH EXACTLY HOW THAT IS
GOING TO BE WILL HAPPEN IS STILL
BEING WORKED OUT BUT THAT WILL
BE A WAY BY WHICH YOU CAN SEE
FROM YOUR COLLEAGUE'S WORK WHAT
DATA MIGHT BE AVAILABLE.
AND THAT YOU MIGHT WANT TO USE.
AND THAT IS ALSO THE -- ONE WAY
IN WHICH YOU'LL COMMUNICATE TO
YOUR COLLEAGUES.
SO LET ME CONCLUDE BY SAYING
THAT DATA SHARING HAS LONG BEEN
EXPECTED.
AND IT'S SOMETHING THAT IS
EXPECTED AS I SAID BEFORE
LITERALLY THE HIGHEST LEVELS OF
GOVERNMENT.
OUR NEW POLICY RAISES THE LEVEL
EXTENDED DEPTH OF DATA SHARING.
THE IMPLEMENTATION WILL BE
JANUARY OF 2023.
SO, THAT IS STILL A WAYS AWAY.
AND ON THE OTHER HAND THAT'S NOT
THAT FAR OFF.
WE ENABLED BOTH NIH AS WELL AS
THE COMMUNITY THE OPPORTUNITY TO
GET READY FOR THIS.
WE RECOGNIZE THAT AS IS TRUE
WHEN YOU'RE DOING SOMETHING BIG
THAT THERE WILL BE TEACHING
OPPORTUNITIES.
AND LEARNING OPPORTUNITIES.
AND SO THIS WILL BE A CONTINUOUS
LEARNING PROCESS AFTER
JANUARY 2023.
THE BASIC REQUIREMENTS ARE ONLY
TWO.
THERE NEEDS TO BE A DATA
MANAGEMENT AND SHARING PLAN THAT
COMES IN WITH THE APPLICATION.
THAT PLAN WILL THEN NEED TO BE
APPROVED BY NIH STAFF AND ONCE
THAT IS APPROVED IT BECOMES
PART OF THE TERMS AND CONDITIONS
OF AWARDS SO GRANT RECIPIENTS
WILL BE REQUIRED TO BE COMPLIANT
WITH THAT AGREED UPON PLAN.
7 AND THE KEY ELEMENTS THAT WILL
BE IN THE DATA MANAGEMENT PLAN
WILL BE HOW WILL DATA BE
MANAGED?
BUDGETING AND REPOSITORY.
PLEASE PAY ATTENTION TO OUR
ACTIVITIES.
INCLUDING WHAT WE'RE DOING RIGHT
NOW AS WELL AS OUR WEBSITE.
I HOPE YOU FOUND THIS HELPFUL
AND I'M MORE THAN HAPPY TO HEAR
COMMENTS OR QUESTIONS.
>> THANK YOU VERY MUCH, MIKE.
I'M SURE THAT THERE WILL BE SOME
COMMENTS AND QUESTIONS.
SO PLEASE RAISE YOUR HANDLED.
-- HAND.
*.
MAYBE I'LL START.
I THINK WE HAVE TALKED A LOT
ABOUT HOW ACADEMIC INSTITUTIONS
INCENTIVIZE CERTAIN ACTIVITIES
AND I THINK THIS IS ONE OF THEM
AND YOU ELUDED TO THE FACT --
THAT PUBLICATIONS ARE REWARDED.
AND THAT OUR HOPE IS THAT DATA
SHARING WILL AS WELL.
WHAT CAN YOU SAY ABOUT HOW
ACADEMIC INSTITUTIONS ARE
INCENTIVIZING THIS?
>> A COUPLE OF THOUGHTS.
WE KNOWS TO -- SOCIETIES AND JOS
HAVE SECTIONS.
7 WOULD WRITE AN ARTICLE AND IT
WOULD GET PEER REVIEWED BUT THAT
ARTICLE IS NOT ABOUT A
HYPOTHESIS BUT A DATA RESOURCE
THAT YOU HAVE MADE AVAILABLE AND
THEN YOU DESCRIBE WHAT THAT DATA
LOOKS LIKE.
AND HOW TO GET TO IT.
AND THEN HOPEFULLY YOU HAVE A
PROCESS IN PLACE WHEREBY YOU'RE
ABLE TO KEEP TRACK OF WHO'S
ACTUALLY LOOKING AT YOUR DATA.
AND THAT IS SOMETHING THAT
SHOULD BE REWARDED ON THE PART
OF ACADEMIC LEADERSHIP.
SECOND IDEA IS THAT DATA --
LET'S SAY YOU HAVE A DATASET
THAT IS IN A REPOSITORY -- THAT
CAN HAVE A DOI -- THAT IS
CONNECTED TO IT.
JUST LIKE A PUBLICATION DOES.
AND THEN MANY RESEARCHERS HAVE
ORCHID IDs.
A FAIRLY EASY -- OR ACTUALLY
FOUR PARTS.
A GRANT, RESEARCHER AND DATASET
-- AND THEN THE USE OF THAT
DATASET ALL PUT TOGETHER AND ONE
CAN TRACK HOW DATA ARE BEING
USED.
WE WOULD HOPE THAT WE WOULD GET
TO THE POINT FOR EXAMPLE WHERE A
SCIENTIST WOULD SAY I HAVE
PUBLISHED CERTAIN PAPERS AND
SOME OF THESE PAPERS HAVE BEEN
HIGHLY CITED OR MAYBE INCLUDED
IN CLINICAL PRACTICE GUIDELINES.
WE COULD ALSO IMAGINE WHERE A
RESEARCHER WOULD SAY I HAVE DONE
THIS WORK.
IT HAS PRODUCED X DATA AND THESE
DATA ARE BEING USED NOT BY MY
TEAM BUT BY OTHER PEOPLE WHO
HAVE USED THOSE DATA TO COME UP
WITH A VARIETY OF INTERESTING
INSIGHTS.
AND THEREFORE THAT REPRESENTS A
CONTRIBUTION TO SCIENCE.
THIS IS SOMETHING THAT I THINK
WILL HAVE TO EVOLVE OVER TIME
BUT HOPEFULLY AS MORE AND MORE
DATA ARE BEING SHARED THIS WILL
BECOME -- THERE WILL BE MORE
THINKING ABOUT HOW DO WE MAKE
THIS A POSITIVE -- AND HOW DO WE
MAKE THIS SOMETHING THAT PEOPLE
WILL WANT TO DO AND PEOPLE GET
REWARDED FOR AS OPPOSED TO A
CHORE.
>> THANK YOU.
CYNTHIA MORTAN HAS A QUESTION.
>> HI, MIKE.
THANK YOU FOR THIS PRESENTATION.
I'M A MEMBER OF THE AMERICAN
SOCIETY OF HUMAN GENETICS.
AND THE GENETICS COMMUNITY IS
REALLY VERY STRONGLY BEHIND DATA
SHARING AS YOU PROBABLY KNOW.
AND THERE ARE SOME OF CONCERNS
ABOUT WHETHER CONGRESS MIGHT
STEP IN AT SOME POINT AND WEIGH
IN ON THIS.
I'M CURIOUS WHERE YOU THINK THAT
PULSE IS AT THIS POINT?
>> WE'LL HAVE TO BE CAREFUL
ABOUT COMMENTING ON WHAT
CONGRESS MAY OR MAY NOT DO.
I DO THINK WHAT CONGRESS HAS
DONE IS THEY PASSED A LAW THAT
SAID THAT THE DIRECTOR IS
AUTHORIZED TO REQUIRE DATA
SHARING.
THERE ARE -- SO NOW I'M GOING TO
TAKE A STEP BACK.
NOT MAKING ANY COMMENTS ABOUT
ANY LEGISLATION.
JUST MAKING SOME OBSERVATIONS
ABOUT VARIOUS THINGS THAT WE
HAVE HEARD.
IN SOME RESPECTS -- THERE IS A
STRONG PUSH TOWARDS SHARING
DATA.
A GOOD EXAMPLE WOULD BE THE
CLINICAL TRIALS.
SHOULD BE SHARED FOR A VARIETY
OF OBVIOUS REASONS.
FOR GENETIC DATA SOME PEOPLE ARE
WORRIED THAT SHARING GENETIC
DATA IT MAY FALL INTO THE WRONG
HANDS.
MAY GET MISS IN INTERPRETED AND
THAT IS SOMETHING THAT WE ALL
NEED TO MANAGE.
I ALSO THINK THAT IT'S PROBABLY
-- I THINK THAT IT'S ALSO
IMPORTANT TO CONVEY A MESSAGE
THAT IF WE KNOW A PERSON'S
GENOME WE DON'T REALLY KNOW
THEM.
THERE IS A LOT MORE TO HUMAN
BIOLOGY AND HUMAN HEALTH AND TO
HUMAN ENVIRONMENT THAN A
PERSON'S GENOME.
SO WHILE THERE ARE GREAT
INSIGHTS TO BE ACHIEVED BY
SHARING THOSE KINDS OF DATA --
SOME OF THE DESCRIPTIONS OF THE
DANGERS ARE PROBABLY A BIT
BEYOND REALITY.
I HOPE THAT MAKES SENSE.
>> THERE ARE OTHER QUESTIONS?
>> OKAY.
SO ONE QUESTION -- MIKE THAT MAY
COME UP IS HOW THESE PLANS WILL
BE REVIEWED BY STAFF AND HOW
WE'RE GOING TO ENSURE THAT ALL
INSTITUTE STAFF REVIEW THEM IN A
SIMILAR WAY?
>> SO WHAT WE'RE GOING TO DOING
-- LARGELY FOLLOWING -- A LIST
OF ELEMENTS THAT WE PUT OUT WHEN
THE POLICY WAS RELEASED BACK IN
OCTOBER OF 2020.
THIS IS NOT A BLANK PIECE OF
PAPER.
IT ACTUALLY IS A SERIES OF
FAIRLY SPECIFIC QUESTIONS.
THE PLAN ITSELF IS GOING TO BE
FAIRLY SHORT.
I BELIEVE IT'S GOING TO BE THREE
PAGES OR LESS.
SO WE'RE NOT ASKING FOR A 20
PAGE -- BUT THERE ARE A NUMBER
OF SPECIFIC ITEMS THAT ARE
DESCRIBED OR THAT ARE ASKED FOR.
WE ARE DEVELOPING TOOLS -- FOR
OUR OWN STAFF TO MAKE IT --
RELATIVELY EASY AND
STRAIGHTFORWARD FOR THEM TO
REVIEW THESE.
WE'RE ALSO VERY PLEASED TO SEE
WHAT IS HAPPENING IN THE
EXTRAMURAL COMMUNITY.
FOR EXAMPLE, WE KNOW THAT FACET
AND ORGANIZATIONS LINKED TO
FACET HAVE PUT TOGETHER A DATA
MANAGEMENT TEMPLATE.
I'M NOT ENDORSING IT BUT I
LOOKED AT IT AND IT LOOKS GOOD.
BASED ON THE POLICY THAT WE PUT
OUT BACK IN OCTOBER OF 2020.
7 IN FACT WHAT IS INTERESTING
WE'VE SEEN THERE ARE SOME
RESOURCES OUT THERE THAT PROVIDE
TEMPLATES NOT ONLY FOR THE NIH
DATA MANAGEMENT AND SHARING
POLICY BUT ALSO FOR POLICIES OF
A WHOLE HOST OF OTHER FUNDERS
AND IT'S BILL GATES AND SHOWN -N
AND OTHERS.
WE ALSO KNOW A NUMBER OF
LIBRARIES -- ARE ALSO DEVELOPING
RESOURCES AS WELL.
SO OUR THINKING IN TERMS OF OUR
STAFF IS THAT THERE WILL
HOPEFULLY BE A TIME BEFORE TOO
LONG WHEN MOST OF THESE LOOK
SIMILAR AND THE ELEMENTSES THAT
ARE REQUIRED ARE WELL DESCRIBED.
WE HAVE TOOLS IN PLACE AND
THEREFORE THE VAST MAJORITY OF
THESE SHOULD BE FAIRLY
STRAIGHTFORWARD AND EASY TO
APPROVE RELATIVELY QUICKLY.
WE ALSO THINK THAT WITH THE
SAMPLE PLANS WHERE YOU PUT THE
SAMPLE PLANS OUT THERE AND
ENCOURAGE PEOPLE TO LOOK AT THEM
AND USE THEM TO HELP THEM PUT
THEIR OWN PLANS TOGETHER, THAT
WILL ALSO MAKE IT EASIER FOR OUR
STAFF.
OUR HOPE IS THAT THE VAST
MAJORITY OF THE PLANS WILL GO
THROUGH EASILY.
AND THEN AS NEED BE CENTRALLY
WE'LL PROVIDE ADVICE FOR THOSE
THAT ARE TRULY DIFFICULT.
>> GREAT.
THANK YOU.
THAT WAS VERY INFORMATIVE.
ANY ADDITIONAL QUESTIONS?
ALL RIGHT.
WELL YOU'VE ANSWERED ALL OF THE
QUESTIONS AND IT'S CRYSTAL CLEAR
NOW.
>> THANK YOU.
AND PLEASE VISIT OUR WEBSITE
WHEN YOU HAVE A CHANCE.
>> GOOD.
THANKS, MIKE.
BYE-BYE.
ALL RIGHT.
SO THAT IS THE END OF OUR
PROGRAM TODAY.
TOMORROW WE WILL BE HEARING
ABOUT REVIEWS SO WE WILL BE
JOINED BY DR. BRUCE REED WHO IS
THE DEPUTY DIRECTOR OF THE
CENTER FOR SCIENTIFIC REVIEW.
AND DR. WAGNER MILLER WILL TALK
ABOUT NIDCD PEER REVIEW AND THEN
A SESSION WHERE WE'LL TALK ABOUT
THE BRAIN INITIATIVE THAT I
THINK WILL BE VERY INTERESTING.
SO ARE THERE ANY LAST MINUTE
COMMENTS?
IF NOT WE'RE ADJOURNED AND I
WILL SEE YOU ALL TOMORROW.
THANK YOU.