GOOD MORNING.
THIS IS STEVE SHERRY AGAIN.
I'M GOING TO BE TURNING THIS
OVER TO OUR CHAIR OF THE BOARD.
DR. OGUNYEMI.
>> THANK YOU.
JUST ONE MORE MOMENT FOR
EVERYONE TO JOIN.
OKAY.
IT IS GOOD TO SEE EVERYONE.
I'D LIKE TO WELCOME YOU ALL TO
THE OPEN PORTION OF THE BOARD OF
REGENTS MEETING.
AS A REMINDER, THIS MEETING IS
VIDEOCAST FOR THE PUBLIC.
THE MEETING IS BROADCAST LIVE ON
THE NIH VIDEOCAST SITE AND WILL
BE AVAILABLE FOR ONLINE VIEWING.
THE FIRST ORDER OF BUSINESS IS
LOOK AT THE SEPTEMBER 2024
MINUTES AND FUTURE MEETINGS, BUT
I DO HAVE TO SAY IT IS GOOD TO
SEE EVERYONE FOR THE FIRST TIME
THIS YEAR.
SO THE BOARD OF REGENTS SUMMER
MEETING WILL BE JULY 8, 2025.
THERE IS A PROPOSED, THIS IS THE
PROPOSED VIRTUAL REPLACEMENT FOR
THE MEETING THAT WOULD HAVE BEEN
HELD IN FEBRUARY OF 2025.
THE FALL MEETING WILL BE IN
OCTOBER 2025.
IT WILL BE A TWO-DAY SESSION IN
PERSON.
SO LOOK OUT FOR POLLING REQUESTS
ON YOUR AVAILABILITY FOR
ATTENDING THE FALL MEETING.
THE BOARD OF REGENTS WINTER
MEETING WILL BE FEBRUARY 10,
2026.
IT IS CONFIRMED.
IT WILL BE VIRTUAL.
BOARD OF REGENTS SPRING MEETING
MAY 12, 2026.
THAT IS CONFIRMED.
IT IS A TUESDAY.
IT IS VIRTUAL.
THE BOARD OF REGENTS FULL
MEETING FOR 2026 IS SEPTEMBER
15-16, 2026 AND THAT WILL BE IN
PERSON.
THE BOARD OF REGENTS WINTER
MEETING FOR FEBRUARY 9, 2027 IS
CURRENTLY PROPOSED AND FOR THE
SPRING MEETING MAY 11, 2027 IS
ALSO CURRENTLY PROPOSED.
SO ONE OF THE FIRST THINGS WE
NEED TO DO IS APPROVE THE
SEPTEMBER 10-11, 2024 MINUTES
FOR THE LAST IN-PERSON BOARD
MEETING.
SO FOR THE MEMBERS OF THE BOARD
OF REGENTS WHO READ THE MINUTES,
DO I HAVE A MOTION TO APPROVE
THE MINUTES OR ARE THERE ANY
CHANGES?
>> I MOVE TO APPROVE.
>> IS THERE A SECOND?
>> SECOND.
>> OKAY.
ALL THOSE IN FAVOR.
OKAY.
SO THE MINUTES ARE APPROVED.
WE ALSO NEED VOICE APPROVAL OF
THE FUTURE MEETING DATES.
WE DON'T NEED AN ACTUAL VOTE.
ARE THERE ANY ISSUES WITH THE
DATES AS ANNOUNCED.
>> I MOVE TO APPROVE.
>> SECOND.
>> CLARIFICATION.
>> SORRY.
>> I WANT TO MAKE SURE I HEARD
CORRECTLY WE ARE MOVING THE FALL
IN-PERSON TO OCTOBER NOT
SEPTEMBER.
>> RIGHT.
>> THE AGENDA SAYS SEPTEMBER.
>> IT MAY BE MOVED TO OCTOBER.
>> I JUST WANT TO MAKE SURE I
HEARD THAT CORRECTLY.
>> RIGHT.
YOU DID HEAR THAT CORRECTLY.
>> I CAME IN IN THE MIDDLE OF
YOUR ANNOUNCEMENT.
DID YOU SAY THE FEBRUARY MEETING
IS MOVED TO JULY?
>> YES.
THE MEETING THAT WAS SUPPOSED TO
BE IN FEBRUARY, WILL BE JULY 8,
2025.
YOU AND I MAY HAVE TERMED OFF BY
THEN.
>> THAT IS MY QUESTION.
>> YES.
>> BECAUSE WE WERE SUPPOSED TO
BE AT THAT MEETING, SHOULD WE BE
AT THE JULY MEETING OR SHOULD WE
BE DONE?
>> WE CAN FOLLOW UP WITH STEVE
OFFLINE.
WE PROBABLY WILL HAVE TERMED
OFF.
>> OKAY.
>> THANK YOU.
SO OTHER FUTURE MEETING DATES OF
RELEVANCE, THE MLA MEETING APRIL
29-MAY 2 IN PITTSBURGH,
PENNSYLVANIA.
THE NEXT MEETING MAY 19-22, OF
2026 IN MILWAUKEE, WISCONSIN.
THE AAMC MEETING NOVEMBER 1-5 IN
SAN ANTONIO, TEXAS.
THE AMIA FALL MEETING MAY 15-19
IN GEORGE.
DECEMBER 11 IN DALLAS, TEXAS.
WITH THOSE FUTURE MEETING DATES
PRESENTED I'M GOING TO MOVE TO A
REPORT FROM THE ACTI IING NLM
DIRECTOR STEPHEN SHERRY.
>> THANK YOU, LOLA.
I'M GLAD TO GIVE YOU AN UPDATE
ON THE EXCITING THINGS GOING ON
AT NLM.
IT HAS BEEN A WHILE BEFORE WE
MET.
I WOULD LIKE TO INFORM YOU ABOUT
NIH'S NEW LEADERSHIP.
WHO IS RUNNING THE SLIDES?
JUST ONE SECOND.
ALL RIGHT.
JUST BEAR WITH US ONE MORE
SECOND.
THESE SLIDES ARE COMING UP, I'M
BEING TOLD.
>> NO PROBLEM.
ALL RIGHT.
HERE WE GO.
THANKS FOR YOUR PATIENCE,
EVERYONE.
SO BEFORE DELIVERING NLM UPDATES
I WOULD LIKE TO INFORM YOU ABOUT
NIH'S NEW LEADERSHIP.
I'M SURE YOU ARE AWARE, NIH HAS
A NEW DIRECTOR AND A NEW
LEADERSHIP TEAM.
THE DIRECTOR OF NIH, JAY
BHATTACHARYA WAS CONFIRMED IN
MARCH IN THIS YEAR.
HE IS JOINED BY HIS LEADERSHIP
TEAM.
MATTHEW -- CRANSTON CHIEF OF
STAFF, JAMES McELROY, DEPUTY
CHIEF OF STAFF, ERIC SHNOBBLE,
CHIEF OPERATING OFFICER AND
ACTING DEPUTY DIRECTOR FOR
INTRAMURAL.
JOHN MARSH.
DOCTOR BHATTACHARYA HAPZ SHARED
PRIORITIES, INCLUDING POPULATION
HEALTH, ENSURING RESULTS FROM
NIH-FUNDED RESEARCH, REP
LICKABLE AND GENERALIZABLE.
FOSTERING INNOVATION AND
EMBRACING NEW APPROACHES.
MAINTAINING THE HIGHEST ETHICAL
STANDARDS AND BEING RESPECTFUL
OF DISSENTING OPINIONS.
WE LOOK FORWARD TO ADVANCING THE
NIH MISSION.
I WOULD LIKE TO GIVE A BRIEF
OVERVIEW OF THE BUDGET.
NIH IS UNDER A CONTINUING
RESOLUTION UNTIL SEPTEMBER 2025.
NLM REMAINS AT THE SAME FY 24
APPROPRIATION LEVEL AND NIH IS
AT $1 BILLION INCREASE OVER FY
24.
THE BUDGET FORMULATION IN
SUPPORT OF THE PRESIDENT'S
BUDGET REQUESTS FOR 2026 HAS
BEGUN.
THE BUDGET FIGURES ARE STILL
UNDER DEVELOPMENT.
THERE WILL BE MORE ON THAT AT
OUR NEXT MEETING.
NEXT SLIDE, PLEASE.
NLM SUCCESS IS DRIVEN BY OUR
DEDICATED SENIOR LEADERSHIP
TEAM.
I'M PROUD TO HAVE THIS TEAM HERE
IN THE ROOM.
SINCE WE LAST MET, DR. MIKE
HURDA, HAS RETIRED.
HIS DUTIES AND RESPONSIBILITIES
ARE CURRENTLY BEING FULFILLED BY
DINA PALTU AND MYSELF.
I WOULD LIKE TO SHOUTOUT THE
SUPPORT FOR ACTING NLM.
THANK YOU ALL.
MOVING ON TO THE PROGRAM AND
SCIENTIFIC UPDATES I WOULD LIKE
TO START WITH A NEW NLM VIDEO
THAT HIGHLIGHTS THE WORK OF ONE
OF OUR INVESTIGATORS, DR. WARREN
PORTER.
IN 2020 DR. PORTER'S WORK WAS
ABOUT LEARNING MORE ABOUT
PROTEINS CHANGING THE STRUCTURES
AND FUNCTIONS IN RESPONSE TO THE
CHANGES IN THE CELL.
FOLD-SWITCHING PROTEINS THAT CAN
CHANGE THEIR SHAPE.
THESE ARE ASSOCIATED WITH
CANCER, ALZHEIMER'S DISEASE AND
AUTOIMMUNE INFUNGS.
RECENT RESEARCH CENTERS AROUND
COLLECTING MORE EXAMPLES OF FOLD
SWITCHING AND IMPROVE ALPHA
FOLD, AN A.I. METHOD FOR
STRUCTURE PREDICTION.
CAN WE PLAY THE VIDEO, PLEASE.
>> I WAS TAUGHT THAT A PROTEIN
FOLDED SOME KIND OF STRUCTURE
THAT MEANT IT HAD ONE STRUCTURE
AND THAT WAS IMPORTANT FOR ITS
FUNCTION.
I STUDY PROTEINS THAT CAN
COLLAPSE IN DIFFERENT WAYS
DEPENDING ON WHAT'S GOING ON IN
THEIR ENVIRONMENTS.
AND IT TURNS OUT THESE PROTEINS
ARE PRETTY IMPORTANT.
SO THEY ARE RELATED TO A NUMBER
OF HUMAN DISEASES SUCH AS
CANCER, ALZHEIMER'S,
GASTROINTERITIS AND THERE IS A
COVID FOLD.
IT SEEMS TO BE A PRETTY
IMPORTANT THING FOR HOW LIVING
ORGANISMS FUNCTION, THE PROTEINS
ARE DIFFICULT TO CHARACTERIZE
AND THERE AREN'T VERY GOOD
COMPUTATIONAL METHODS FOR
DISCOVERING THEM.
WE ARE GROPING IN THE DARK
TRYING TO FIND EXAMPLES WITH THE
TOOLS WE HAVE.
IF WE UNDERSTOOD BETTER WHICH
PROTEINS SWITCH AND HOW THEY
SWITCH, A MORE BIOPHYSICAL
QUESTION, IT MAY BE POSSIBLE TO
DEVELOP BETTER THERAPIES FOR
DISEASES OR THERE ARE, FOR
INSTANCE, BACTERIAL AND VIRAL
PROTEINS THAT SWITCH FOLDS THAT
SEEM TO BE INVOLVED IN HUMAN
DISEASE.
IT MAY BE POSSIBLE TO INHIBIT
THEM FROM CAUSING THE DISEASES.
AGAIN, WE NEED TO UNDERSTAND THE
PRINCIPLES OF HOW FOLDING
WORKING.
I STARTED IN 2019 AND ALPHA FOLD
WAS ANNOUNCED IN 2021.
SOMEONE AT NLM ASKED ME DOES
THIS MEAN YOU DON'T NEED TO DO
YOUR RESEARCH ANYMORE?
ACTION I WORKS BECAUSE IT IS
TRAINED ON LARGE AMOUNTS OF
DATA.
PROTEIN FOLD IS A LOW AMOUNT OF
DATA.
IT IS HARD TO TRAIN AN ALGORITHM
ON A HANDFUL OF EXAMPLES AND
EXPECT IT TO WORK.
IF WE CAN DISCOVER MORE EXAMPLES
THAT POTENTIALLY CAN IMPROVE THE
AI, I ALSO THINK AS FAR AS
PROTEINS ARE CONCERNED THERE MAY
BE FUNDAMENTAL PRINCIPLES WE
DON'T UNDERSTAND AND COULD
UNDERSTAND THEM BETTER AND
COMBINE WITH AI, THAT COULD MAKE
THE TOOLS MORE GENERALIZABLE.
I THINK THIS RESEARCH COULD BE A
GAME CHANGER.
IF PROTEINS ARE CHANGING THEIR
STRUCTURES AND FUNCTIONS,
ALTERNATIVE SPLICING IS
PRODUCING NEW STRUCTURES WITH
DIFFERENT FUNCTIONS THEN IT
COULD FUNDAMENTALLY CHANGE THE
WAY WE UNDERSTAND HOW PROTEINS
WORK AND HOW LIFE WORKS.
>> THANK YOU.
WE HOPE YOU ENJOYED LEARNING
MORE ABOUT HOW DR. PORTER'S WORK
CAN HELP US BETTER UNDERSTAND
THE FUNDAMENTAL PROPERTIES OF
WHY FOLD SWITCHING HAPPENS IN
THE FIRST PLACE AND USE THAT TO
DEVELOP BETTER THERAPIES FOR
DISEASES AND PROTEINS WORK.
INNOVATION IS SUCH A PRISHT AT
NLM, I WOULD LIKE TO GIVE YOU
UPDATES ON NLM'S COMMITMENT ON
INNOVATION.
NLM LAUNCHED AN INNOVATION
PROGRAM TO EMBED CONTINUOUS
INNOVATION INTO OUR CULTURE.
PREVIOUSLY A LACK OF TIME,
FUNDING AND RESOURCE AND NO
CLEAR CRITERIA TO STANDARDIZE
INNOVATIVE IDEAS.
BEFORE THE PROGRAM, PROGRAMS
LACKED TIMELINES AND
INSUFFICIENT SUPPORT TO DEVELOP
IDEAS AND NO STANDARD PATH TO DO
THIS.
THE NLM LEADERSHIP TEAM
DEVELOPED A FORWARD-LOOKING
MODEL FOR INNOVATION.
IT IS FAIR AND EQUITABLE
OPPORTUNITIES FOR ALL STAFF TO
GENERATE AND LAUNCH NOVEL IDEAS
AND A CONSISTENT PROCESS FOR
IDEA REVIEW AND EVALUATION AND
VISIBILITY AND TRANSPARENCY INTO
ALL INNOVATION IDEAS AND
PROJECTS WITHIN OUR PORTFOLIO.
THIS PROGRAM ADDRESSES KEY
CONCERNS FROM THE ANNUAL
EMPLOYEE SURVEY EMPOWERING OUR
EMPLOYEES TO LOOK FOR NEW WAYS
ON HOW WE DO OUR WORK TO
INCORPORATE NEW IDEAS AND
ENABLING SUPERVISORS THROUGHOUT
NLM.
WE LAUNCHED THE PROGRAM IN LATE
SEPTEMBER AFTER OUR LAST
MEETING.
WE RECEIVED 14 INNOVATION IDEAS.
THREE IDEAS HAVE REACHED THE
PROPOSAL STAGE OR MILESTONE ONE.
THE IPB IS RUNNING SMOOTHLY AND
MEETING MONTHLY SINCE THE
LAUNCH.
THE BOARD IS CONSIDERING IDEAS
FOR THE FIRST MILESTONE.
FACILITATORS ARE ACTIVELY
ENGAGING WITH INNOVATION OWNER
AND SUPPORT THE IDEAS.
ALL FACILITATORS ENGAGE IN
MONTHLY NETWORK SESSIONS TO
SUPPORT EACH OTHER AND TO SHARE
KNOWLEDGE AND SOLUTIONS.
BASED ON USER FEEDBACK, WE ARE
MAKING IMPROVEMENTS TO OUR
STRATEGIC TRACKING SYSTEM CALLED
STARS.
THE NLM STARS INNOVATION MODULE.
I WANT TO TAKE A MOMENT TO
REVIEW HOW THESE 14 IDEAS ARE
PROGRESSING.
THE IDEAS ARE AT VARIOUS STAGES
IN THIS PROCESS THREE MOVING
PAST MILESTONE ONE.
ONCE AN IDEA PASSES MILESTONE
ONE AND AN INNOVATION TEAM IS
ASSEMBLED TO DEVELOP A MORE
THOROUGH PROPOSAL, WE HAVE A FEW
IDEAS FURTHER DEVELOPED BETWEEN
THE INNOVATION OWNER BEFORE THEY
GO TO THE IPB TO EVEN MOVE TO
MILESTONE ONE.
I WANT TO SHARE HOW THEY ALIGN
WITH NLM OBJECTIVES.
ONE WOULD PROVIDE NEW RESOURCES
ON INFECTIOUS DISEASES.
ANOTHER WOULD ENHANCE EFFICIENCY
BY DEVELOPING A NEWBY
DIRECTIONAL MODEL.
A THIRD IDEA EXEMPLIFIES FISCAL
STEWARDSHIP WITH A SUSTAINABLE
TECHNOLOGY THAT REDUCES COSTS.
EACH OF THESE EXAMPLES SUBMITTED
TO THE NLM PROGRAM HELPED REACH
NLM'S OBJECTIVES, ON MIZING
INNOVATION AND RENEWING
CAPACITY.
WE LOOK FORWARD TO GREAT WORK
AHEAD.
NEXT SLIDE, PLEASE.
I'LL MOVE ON TO SHARE EXCITING
ACCOMPLISHMENTS FROM ACROSS NLM.
THIS WAS A CHALLENGING YEAR, BUT
OUR INSTITUTE'S INNOVATION HAS
ALLOWED US TO ACHIEVE SOME
INCREDIBLE RESULTS.
LET'S BEGIN WITH THE DLR,
RESEARCHERS DEVELOP AND APPLY
RESEARCH TO BIOMEDICINE AND
HUMAN HEALTH.
NLM INTRAMURAL INVESTIGATORS
HAVE BEEN PRODUCTIVE THIS YEAR.
48 PEER REVIEWED JOURNAL
PUBLICATIONS AND CONFERENCE
PROCEEDINGS, 53 SUBMISSIONS
UNDER REVIEW.
THEIR ARTICLES APPEAR IN NATURE,
NATURE METHODS, NATURE MEDICINE,
NATURE COMMUNICATION, CELL,
MOLECULAR CELL, CELL SYSTEMS AND
SCIENCE.
SEVERAL NOTEWORTHY EXAMPLES ARE
SHOWN HERE IN THIS TABLE.
ADDITIONALLY, SEVERAL
INVESTIGATORS HAVE RECEIVED
INDIVIDUAL HONORS AND AWARDS.
DAVID LANSMAN WAS -- DINA IS
SERVING AS SENIOR AREA CHAIR FOR
ACL2025.
PORTER WAS PROMOTED TO THE
EDITORIAL BOARD OF PROTEIN
SCIENCE.
TERESA PRZTYCKA COLLEGE OF
FELLOWS OF AMERICAN INSTITUTE
FOR MEDICAL AND BIOLOGICAL
ENGINEERING.
EUGENE KOONIN HONORARY
DOCTORATES FROM WEIZMANN
INSTITUTE OF SCIENCE.
AGUSTIN LUNA ORGANIZED THE ISMB
TO 25 MEETING.
A HARDY CONGRATULATIONS TO
THESE.
TRAINEES IN THE DIR HAVE HAD
SUCCESSES TO CELEBRATE.
MANY HAVE MATRICULATING TO
GRADUATE OR MEDICAL PROGRAMS OR
ACCEPTED POSITIONS ON FACULTY.
OUR TRAINEES MAKE US PROUD AND
THE FUTURE OF BIOMEDICAL
RESEARCH IS EXCITING BECAUSE OF
THEM.
DR. RICHARD SHERMAN ENGAGED WITH
EXTERNAL STAKEHOLDERS TO DEVELOP
A ROAD MAP FOR NLM INTRAMURAL
RESEARCH.
THIS WILL SERVE AS A STRATEGIC
GUIDELINE FOR THE DIR AND HAS
FIVE GOALS.
THE PINK CIRCLE AND WORKING
CLOCKWISE GOAL ONE IS GROW
DIVISION OF INTRAMURAL RESEARCH.
GOAL TWO ADVANCE R & D PRODUCTS,
GOAL THREE RAISE VISIBILITY OF
THE PROGRAM.
GOAL FOUR MODERNIZE DIR
ADMINISTRATION AND GOAL FIVE TO
TRAIN THE NEXT GENERATION OF
INVESTIGATORS.
THE ROAD MAP IS COMPLETE AND WE
LOOK FORWARD TO HOUT IT WILL
GUIDE INFORMATICS.
NEXT SLIDE.
LAST YEAR NLM REISSUED THE
COMPUTATIONAL APPROACHES TO
SCALE OF BIOMEDICAL -- THIS IS A
NOTICE OF FUNDING OPPORTUNITY.
THE AMOUNT OF BIOMEDICAL DATA
BEING PRODUCED IS INCREASING AND
OUR GRANTEES ARE MAKING SENSE OF
WHAT IS IMPORTANT TO KEEP AND
WHAT TO DISTRIBUTE.
THEY ADVISE INNOVATIVE
KOCHATIONAL APPROACHES FOR DATA
COLLECTING AND MINING.
WE ARE PROUD TO SUPPORT THEIR
NETWORK THAT ULTIMATELY SUPPORT
DATA DRIVEN KNOWLEDGE DISCOVERY.
NLM HAS A LONG HISTORY OF
TRAINING THE NEXT GENERATION OF
BIOMEDICAL INFORMATICS FELLOWS
FOR TRAINING PROGRAMS.
WE FEEL IT IS IMPORTANT TO HAVE
MULTIFACETED OPPORTUNITIES TO
SUPPORT EARLY STAGE
INVESTIGATORS.
THIS FISCAL YEAR WE SIGNED ON TO
CAREER DEVELOPMENT NOVOS.
THE KO1 PROGRAM, MENTOR TRAINING
AND KO8 FOR EARLY STAGE
INVESTIGATORS.
WE SIGNED ON TO A NEW K25
PROGRAM SUPPORT FOR
PROFESSIONALS WITH QUANTITATIVE
OR ENGINEERING BACKGROUNDS TO
INTEGRATE THEIR EXPERIENCE WITH
NIH RELEVANT RESEARCH.
WE LOOK FORWARD TO THESE CAREER
DEVELOPMENT PROGRAMS.
MORE INFORMATION CAN BE FOUND ON
THE DIVISION OF INTRAMURAL.
WE ARE RECOGNIZING OUTSTANDING
SCIENTISTS BEGINNING THEIR
CAREERS.
WE WOULD LIKE TO RECOGNIZE TWO
RECIPIENTS OF THIS YEAR'S AWARD.
DR. MITRFANOVA SPRAINS GENOMIC
RESEARCH, OPTIMAL TREATMENT FOR
CANCER AND DISCOVER POSITIVE
EFFECTS OF THE TREATMENTS.
DR. CHEN IS IN DATA MINING,
MACHINE LEARNING AND HIS
RESEARCH INCLUDES DISEASE
PREDICTION, PERSONALIZED
MEDICINE, WORK FLOW AND
IMPROVING PATIENT OUTCOMES.
CONGRATULATIONS TO DR.
MITROFANOVA AND DR. CHEN.
OUR EXTRA MURAL PROGRAM GRANTEES
WERE PRODUCTIVE.
THEY PUBLISHED 230 ARTICLES ON
NLM FUNDED HIGH IMPACT RESEARCH.
FOR EXAMPLE, WAYS TO CREATE A
PLATFORM CALLED THE HUMAN
MICROBIOME COMPENDIUM ANALYZED
PUBLICLY AVAILABLE HUMAN GUT
MICROBIOME.
THEY WERE ABLE TO PROCESS NEARLY
170,000 SAMPLES.
SIMON WARFIELD BOSTON CHILDREN'S
HOSPITAL PRODUCED MACHINE
LEARNING TO HAVE FASTER AND COST
EFFECTIVE IDENTIFICATION.
THEY USED DATA COLLECTED FROM
FETAL SANS TO UNDERSTAND THE
BRAIN DEVELOPMENT BETWEEN 23 AND
36 WEEKS OF GESTATION.
THE ARTICLE IN THE NATIONAL
ACADEMY OF SCIENCES DESCRIBES
HOW THIS ATLAS CAN HELP IDENTIFY
PREDISPOSITION TO BRAIN ZIS
ORDERS.
FINALLY, LUCILA OHNO-MACHADO
DISTRIBUTED CROSS-LEARNING FOR
EQUITABLE FEDERATED MODELS USES
DIVERSE MULTIMODAL DATA SETS.
DECENTRALIZED TO PRESERVE A
PATIENT'S PRIVACY.
THE PROMISE FOR HEALTH CARE
PROVIDERS IS TO COLLABORATE
WITHOUT SUBMITTING PATIENT DATA
OUTSIDE THEIR OWN SYSTEMS.
NEXT SLIDE, PLEASE.
MOVING DOWN TO LISTER HILL.
I WOULD LIKE TO FOCUS ON THE
ADVANCEMENTS NLM HAS MADE IN
APPLIED RESEARCH AND
DEVELOPMENT.
IN THE PAST FOUR YEARS NLM HAVE
TESTED MACHINE LEARNING MODELS.
SOME RECENT ACHIEVEMENTS INCLUDE
MODELS THAT CAN EXAMINE OPTIC
DISCS IN REAL TIME, CLASSIFY
GLAUCOMA, PREDICT VISUAL ACUITY
SCORES WITH PATIENTS DIAGNOSED
WITH MACULAR DEGENERATION AND
TREATING WITH A SIGNAL PROTEIN
THAT STIMULATES NEW BLOOD
VESSELS.
AFTER A TWO-YEAR COLLABORATION
WITH JOHNS HOPKINS, NIM RELEASED
THE MALARIA SCREENER.
THE NEW VERSION CAN CLASSIFY THE
PARASITE STAGE, COUNT THE CELLS
IN EACH STAGE.
NLM LAUNCHED NLM SCRUBBER, A
TOOL THAT DEIDENTIFIES TEXT IN
HEALTH RECORD THAT ARE IN FHIR
SEQUENCE KWIRYS.
NOW TWO UPDATES FOR THE NATIONAL
CENTER FOR BIOTECHNOLOGY.
IN OCTOBER 2024 NLM TRANSITIONED
TO AN UPDATED PMC WEBSITE
REPRESENTING THE NEXT STEP TO
MODERNIZE PRODUCTS AND SERVICES.
WE WELCOME YOU TO CHECK IT OUT
AT THE NEW USC RL ON THE SLIDE.
SHIFTING THE SITE TO RUN ON
CLOUD SERVICES FOR LONG-TERM
SUSTAINABILITY AND RELIABILITY
AND INCORPORATING U.S. WEB
DESIGN COMPONENTS AND BEST
PRACTICES SO IT IS MORE
ACCESSIBLE AND READABLE.
WHETHER YOU ARE VISITING ON A
DESKTOP COMPUTER OR MOBILE
DEVICE OR ASSISTIVE TECHNOLOGY,
I'M SURE YOU WILL NOTICE THE
DIFFERENCE IN THE UPDATES AS YOU
EXPERIENCE PMC.
WE ADDED PMC JOURNALISTS FOR
STATUS AND A JOURNAL ISSUE TABLE
OF CONTENTS THAT REDIRECTS TO
THE PMC JOURNALIST.
WE HAVE A MORE ROBUST SEARCH
FUNCTIONALITY.
THESE TRANSITION AND UPDATE
EFFORTS REPRESENT THE NEXT
STANLEY CUP TO MODERNIZE NLM'S
PRODUCT AND SERVICES.
I'M ALSO PLEASED TO SHARE THAT
IN NOVEMBER NLM LAUNCHED THE NEW
EGAPX, A CLOUD-BASED PUBLICLY
AVAILABLE VERSION OF A TOOL NCBI
HAS USED FOR GENERATIONS.
STRUCTURAL ANNOTATIONS ARE THE
KEY COMPONENT OF COMPARATIVE
GENOME ANALYSIS.
EXPLAIN HOW THEY INVOLVE, GENES
THAT ARE IMPORTANT FOR SPECIFIC
TRAITS AND INSIGHTS FOR HEALTH,
DISEASE AND GENETIC DIVERSITY.
EGAPX IS PART OF THE INITIATIVE
FOR ALL EUKARYOTIC ORGANISMS.
WE TESTED THIS TOOL WITH SEVERAL
COMMUNITY PARTNERS WHO
GRACIOUSLY VOLUNTEERED THEIR
TIME AND COLLABORATIVE EFFORTS
LEADING UP TO ITS FIRST PUBLIC
ANNOUNCEMENT.
WE HAVE RECEIVED OVERWHELMINGLY
POSITIVE FEEDBACK FROM USERS.
CONGRATULATIONS TO THIS TEAM FOR
THIS RELEASE.
IN OTHER NEWS RECENT
DEVELOPMENTS ON THE ABM
INFLUENZA A, H1N1.
THESE WERE SUBMITTED BY THE CDC,
WHO AND OTHER ORGANIZATIONS.
GEN BANKS FOR INFLUENZA VIRUSES
REMOVES THE NEED FOR ANNOTATION
FILE.
NLM STAFF PROVIDE A SERVICE TO
PROCESS AND QUICKLY RELEASE
ANNOTATIONS UNDER TWO HOURS NOW.
THOSE LOOKING TO DOWN LLOYD DATA
ON H5N1 THEY ARE AVAILABLE ON
NCBI VIRUS AND DATA SETS.
NCBI VIRUS TAKES SUBMISSIONS
INTO ASSEMBLIES.
MAKING IT EASIER FOR USERS TO
RETRIEVE THE MOST UPTO DATE
DATA.
IT HELPS FIND DATA BEST SUITED
FOR THEIR INTERESTING BY META
DATA AND FILTER OPERATIONS.
THERE ARE SETS WHERE YOU CAN
DOWNLOAD A GENOME SEQUENCE AND
KEY META DATA.
LATER IN OUR PRESENTATION WE'LL
WELCOME NCBI'S DR. HEIDI SOFIA
WHO WILL PRESENT AN ECONOMETRICS
TOOLKIT TO MEASURE THE RESOURCES
OF NCBI.
WI HAVE THE GOAL OF EXTENDING
ACROSS NIH.
NOW A FEW UPDATES FROM NLM'S
OFFICE OF STRATEGIC INITIATIVES.
GIVEN OUR UNIQUE EXPERTISE ON
EMERGING TECHNOLOGIES, NLM
PROVIDES TECHNICAL ASSISTANCE TO
OTHER AGENCIES.
OSI RECENTLY CO-ORDUATED NLM'S
REVIEW OF FOUR PLAN DRAFTS
RELATED TO DATA SCIENCE AND AI
PUBLICLY AVAILABLE FROM
RESPECTIVE AGENCIES.
THE NIH STRATEGIC PLAN FOR DATA
SCIENCE, THE FEDERAL DIGITAL
HEALTH R & D STRATEGY, U.S.
PATENT AND TRADEMARK ARLT
OFFICIAL INTELLIGENCE STRATEGY
AND HHS STRATEGIC PLAN FOR THE
USE OF ARTIFICIAL INTELLIGENCE
IN HEALTH, HUMAN SERVICES AND
PUBLIC HEALTH.
RECENTLY OSI HAS SUBMITTED --
THIS INVENTION IS A NON-INVASIVE
METHOD THAT USES AI TO ESTIMATE
THE PRESSURE IN THE RIGHT
ATRIUM.
WE LOOK FORWARD TO SHARING
UPDATES AND HOPEFULLY GOOD NEWS
AT A FUTURE BOARD OF REGENTS
MEETING.
OSI HOSTED TRAINING FOR OVER 40
NLM STAFF, PRODUCT OWNERS,
MEMBERS OF SENIOR LEADERSHIP ON
RETURN OF INVESTMENT OR ROI
METHODOLOGY.
IT IS AN APPROVED APPROACH FOR
CALCULATED RETURN ON INVESTMENT
AS WELL AS PROVIDING ROI
CERTIFICATION COURSE FOR SOME
STAFF MEMBERS.
THIS WILL ENABLE NLM TO
DEMONSTRATE THE IMPACT AND VALUE
OF THE WORK WE DO AND THE
PRODUCT AND SERVICES WE PROVIDE.
OSM JOINED WITH RIPPLE EFFECT AN
INDEPENDENT FIRM TO ASSESS
CAPACITY AND NEEDS FOR TRAINING
COURSES.
THIS WILL HELP AID IN APPLYING
ROI METH OTDOLOGY TO ALL OF OUR
ACTIVITIES.
WE ARE PLANNING -- THESE ARE
INTEROPERABLE AND FEDERAL DATA
RESOURCES, CLINICAL CARE DATA
PLATFORMS, ADVANCING RESEARCH
AND TECHNOLOGY AND BUILDING A
SKILLED WORKFORCE.
USER SERVICES AND COLLECTIONS
DIVISION HAS SEVERAL UPDATES.
WE HAVE SOME NEW FACES.
DINA SCHROEDER IN THE DISCOVERY
BRANCH.
SHE HAS EFFECTIVELY SERVED AS
THE ACTING CHIEF OF THE
DISCOVERY BRANCH AND 50 STAFF
MEMBERS.
I'M ALSO PLEASED TO ANNOUNCE THE
APPOINTMENT OF PATRICK
McLAUGHLIN AS THE DEPUTY HEALTH
BRANCH CHIEF.
HE OVERSAW SEVERAL HEALTH
STANDARDS PRODUCTS.
NLM'S ONGOING WORK TO MAKE
COLLECTIONS AVAILABLE IN DIGITAL
FORMAT IS A KEY PART OF FORMAT
TO SUPPORTING 21st RESEARCH
ECOSYSTEM.
AMONG THE NEWLY DIGITIZED
COLLECTION I'M THAMES FOR THE
NLM COLLECTIONS I WOULD LIKE TO
SHARE ARCHIVAL COLLECTIONS,
MICHAEL DEBAKEY PAPERS, WILBUR
SAWYER AND JOHN FULTON PAPERS.
NLM HAS STORED AT THE UNIVERSITY
OF MARYLAND.
WE RELOET LOWE KATED 5,000
LINEAR FEET OF MATERIAL TO
BUILDING 38.
HAVING THESE RECORDS ON CAMPUS
WILL GIVE FASTER ACTION.
AND PRESERVE LONG-TERM USE FOR
FUTURE RESEARCHERS.
FOLLOWING A RECORD NUMBER OF
APPLICATION WE WELCOME SIX NEW
MICHAEL DEBAKEY SCHOLARS.
THEY ARE RESEARCHING TOPICS FROM
QUARANTINE IN LATE MEDIEVAL
SPAIN AND ADDICTION BEFORE AND
AFTER THE LAW IN 1956.
EACH FELLOW WILL CONTRIBUTE A
GUEST POST TO THE NLM BLOG
CIRCULATING NOW WHICH REGULARLY
HIGHLIGHTS USER ENGAGEMENT WITH
OUR COLLECTION.
THEIR POST WILL BECOME PART OF A
TAGGED COLLECTION OF POSTS
VIEWED MORE THAN 71,000 TIMES BY
OTHER NLM DRK EBAKEY FELLOWS.
KEEP AND EYE OUT AS THEY ARRIVE.
CIRCULATING NOW I'M PLEASED TO
ANNOUNCE THE PEER REVIEW AND
OPEN ACCESS BOOK FULL CIRCLE
INTO THE 21st CENTURY AND THE
PLAN TO REACH MORE PEOPLE IN
MORE WAYS THROUGH ENHANCED
DISSEMINATION.
CO-EDITED BY BETH MULLEN AND
JEFFREY RESNICK, A NEW ACCESS
POINT FOR RESEARCHERS AND
AUGMENTS THE BLOG AS DEEP
KNOWLEDGE.
THE BOOK IS AVAILABLE FOR FREE
IN DIGITAL FORM THROUGH VIRGINIA
TECH PUBLISHING AND NLM DIGITAL
COLLECTIONS.
PRINT COPIES ARE ALSO AVAILABLE.
NLM COMPUTER AND COMMUNICATING
SYSTEMS.
WE ARE HAPPY TO PROVIDE AN
UPDATE ON THE REDUCTION OF WASTE
AND REDUNDANCIES TO REDUCE
DUPLICATION ON THE NLM ON CAMPUS
FOOTPRINT, DATA STORAGE AND SHIP
TO COMMERCIAL CLOUD SERVICES
WITHOUT COMPROMISING SEARCH
QUALITY OR SECURITY.
WE REQUIRE ROBUST BACKUPS TO
PRET DATA LOSS DUE TO SECURITY
BREACHES OR SYSTEM FAILURES.
THIS INITIATIVE IS UTMOST
IMPORTANCE TO PROVIDE QUALITY
PRODUCTS AND SERVICES TO OUR
USERS.
WE WANT TO REDUCE THE RACKS IN
THE CO-LOCATION SITE BY 67% AND
THE COST OF STORAGE IS REDUCED
BY 35%.
WE LOOK TO THE FUTURE OF
EFFICIENCY BY DEVELOPING AND
IMPLEMENTING ACTION PLANS TO
MAXIMIZE EFFECTIVENESS TO
FURTHER MINIMIZE REDUNDANCIES
AND COSTS GOING FORWARD.
I'M EXCITED TO SHARE NLM HAS
HELPED IMPROVE ACCURACY DATA IN
A PORTAL THAT PROVIDES PUBLIC
ACCESS TO MEDICAL INFORMATION.
OUR CHALLENGE WAS TO TACKLE
INCONSISTENCIES.
OUR ASSESSMENT COVERED
INCONSISTENCIES SUCH AS
INCORRECT YUPTS.
KILOMETERS INSTEAD OF SENT
METERS.
ERRORS LIKE THIS POSE RISKS.
THE SCOPE OF NEW DATA SUB MIXES
MAKES AN AUTOMATED SOLUTION
ESSENTIAL.
WE DEVELOPED AN ANAM LI AND
MACHINE LEARNING EFFECTIVE FOR
IDENTIFYING OUTLIERS.
IT REDUCED THE NEED FOR MANUAL
REVIEWS AND RECORDS COMING
THROUGH.
IT CAN BE PRESENTED TO THE FDA
BEFORE POSTING.
NOW I WOULD LIKE TO TAKE A FEW
MINUTES TO DISCUSS THE STAFF
MEMBERS WHO ARE RETIRED OR
JOINING NLM SINCE OUR LAST BOARD
OF REGENTS MEETING.
WE HAVE SOME NEW APPOINTMENTS TO
SHARE.
I WOULD LIKE TO WELCOME CLAYTON
BINGHAM, WANG, PATRICK
McLAUGHLIN AND DINA SCHROEDER IN
USER.
CLAYTON HAS A GREAT PORT FOALO
IN BIOMEDICAL INFORMATICS, DATA
SCIENCE.
DR. WANG IS FROM THE PROGRAM
MANAGER MANAGING PORTFOLIO IN
INFORMATICS.
SARAH AT NIH FOR A LARGE PORTION
OF HER CAREER IS A PROGRAM
OFFICER IN EXTRA MURAL PROGRAM
OVERSEEING GRANT PROGRAMS FOR
INFORMATICS, NLM SUPPORTED
CLINICAL TRIALS.
YOU HAVE ALREADY MET PATRICK WHO
STARTED AS AN ASSOCIATE FELLOW
IN 2008.
HE IS RESPONSIBLE FOR LEADING
HEALTH STANDARDS AND
COORDINATING WITH NLM AND NIH
STAKEHOLDERS.
TINA BECAME ACTING CHIEF OF THE
DISCOVERY BRANCH AND NLM'S
REPRESENT TO THE CORE TECHNICAL
SERVICES DIRECTORS OF LARGE
RESEARCH LIBRARIES INTEREST
GROUPS.
WELCOME AND CONGRATULATIONS TO
YOU ALL.
WE'RE HAPPY TO HAVE YOU AND
LOOKING FORWARD TO THE STRENGTH
AND ENTHUSIASM YOU EACH BRING TO
NLM.
I ALSO WANT TO INTRODUCE YOU TO
OUR NEWEST TENURE TRACK
INVESTIGATOR.
RENE AND HER LAB ARE APPLYING --
RELATED TO HUMAN HEALTH AND
DISEASE.
HER LAB CARRIES OUT DRY LAB OR
COMPUTATIONAL AND WET LABS WHERE
INVESTIGATORS CHARACTERIZE THE
CEAL PHENOTYPES.
WE WELCOME RENE AND CAN'T WAIT
TO SEE WHAT YOU DO.
IT IS WITH A HEAVY HEART I SHARE
THE DEATH OF ERIC.
HE WAS THE SYSTEMS
ADMINISTRATOR.
HE WAS A CO-AUTHOR OF E-METRICS
FOR INFORMATION PROFESSIONALS
HOW TO USE DATA FOR ELECTRONIC
COLLECTIONS.
ON BEHALF OF OUFR ENTIRE TEAM WE
SEND OUR CONDOLENCES TO ERIC'S
FAMILY.
WE ARE EXCITED TO SHARE AWARDS.
THE 2024 DIRECTOR'S AWARD,
MICHAEL CHANNING NATIONAL EYE
INSTITUTE AND DIVISION OF
INTRAMURAL RESEARCH INDUCTED IN
THE NATIONAL ACADEMY OF
MEDICINE.
JOHN LU WAS DISTINGUISHED POSTER
AWARD AT AMIA ANNUAL SYMPOSIUM
AND HIGH SCHOOL SCHOLAR AWARD
AND GROUP AWARD.
DR. LUNA IS IN THE COMMUNITY
OFFEST SPECIAL INTEREST
ORGANIZING COMMITTEES.
THE ACHIEVEMENTS CONTINUE.
THE NIH PREPRINT PILOT TEAM AT
PMC RECEIVED A 2024 NIH
DIRECTOR'S AWOORD FOR SCIENTIFIC
RESEARCH.
TONY TSE AND JOHN MULLICAN
RECEIVED THE NLM DIRECTOR'S
HONOR AWARD.
JEFFREY BECK AND LINDA YANKI
RECEIVED THE NLM REGENTS AWARD.
BEFORE CLOSING OUT, I WANT TO
RECOGNIZE NLM STAFF.
NIH HAS BEEN UNDERGOING TRANGS
SITUATIONS, RETIREMENTS,
TRANSITIONS AND WE HAVE BEEN
AFFECTED.
I WANT TO THANK ALL NLM STAFF
PAST AND PRESENT FOR ALL THEY
HAVE DONE AND CONTINUE TO DO ON
BEHALF OF THE INSTITUTE.
THE NOTABLE CONTRIBUTIONS AND
PEOPLE ARE TOO GREAT TO NAME AND
INDIVIDUALLY RECOGNIZE IN A
SHORT TIME.
I WANT TO RECOGNIZE AND HONOR
ALL OF OUR COLLEAGUES, ALL OF
WHOM WHO ARE CONTRIBUTED TO
FOSTER THE ONE NLM SPIRIT AND
THE MISSION OF NIH AS A WHOLE.
OUR COLLEAGUES WHO MOVED ON WILL
BE MISSED TREMENDOUSLY.
THE WHOLE IS GREATER THAN THE
SUM OF ITS PARTS, WITH
CHALLENGES AND CHANGE COMING NEW
OPPORTUNITIES WILL ARRIVE.
A KEY WORD THE PAST FEW MONTHS
IS RESILIENCE.
AS SUCH, WE WILL PROVIDE THE
WORLD WITH DATA AND HONOR THOSE
WHO HAVE CONTRIBUTED TO THE NLM
JOURNEY SO FAR.
I WOULD LIKE TO TURN IT OVER TO
DR. TERESA
>> GOOD MORNING.
I WOULD LIKE TO SHARE SOME
RECENT POLICY AND LEGISLATIVE
UPDATES.
NEXT SLIDE.
THERE HAVE BEEN RECENT POLICIES.
IN LATE MARCH NIH ISSUED A
NOTICE OF RESCISSION OF FINAL
SCIENTIFIC INTEGRITY POLICY AND
WILL ADHERE TO THE UPDATED OF
THE U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES TO ADVANCE
LATEST GOALS.
NIH HAS ISSUED TWO GUIDE NOTICES
TO STRENGTHEN OVERSIGHT OF
ACCESS TO AND USE OF PARTICIPANT
DATA IN DATA REPOZ TOIFRS.
ONE NOTICE IS A TECHNICAL UPDATE
TO ENHANCE SECURITY MEASURES FOR
NIH-CONTROLLED ACCESS DATA.
THE OTHER REMINDS RESEARCHERS
POLICY OF SUCH DATA WHEN USING
DEVELOPING AND SHARING
GENERATIVE AI MODELS.
THERE IS UPDATE ON FEDERAL
PRIORITIES.
IN APRIL THE NETWORKING AND
INFORMATION TECHNOLOGY NATIONAL
OCOORDINATION OFFICE RELEASED
INFORMATION ON TO SEEK INPUT ON
UPDATED TO THE AI RESEARCH AND
DEVELOPMENT STRATEGIC PLAN.
IN ADDITION, IN EARLY APRIL THE
WHITE HOUSE OFFICE OF MANAGEMENT
AND BUDGET RELEASED TWO
MEMORANDA OF FEDERAL USE OF AI
AND PROCUREMENT OF AURKS I
RESPECTIVELY.
10,000 REQUESTS FOR RECEIVED.
AND FINALLY EARLIER IN THE YEAR
THE PRESIDENT ISSUED AN
EXECUTIVE ORDER ON REMOVING
BARRIERS FOR AMERICAN LEADERSHIP
IN ARTICLE OFFICIAL
INTELLIGENCE.
THERE HAS BEEN LEGISLATIVE
ACTIVITY.
THE LAW SIGNED INTO LAW IN MID
MARCH PROVIDES FUNDINGS FOR NIH
FISCAL YEAR 2024 LEVELS THROUGH
THE END OF THE CURRENT FISCAL
YEAR.
THERE HAS BEEN RECENT ACTIVITY
RELATED TO THE FISCAL YEAR 2026
APPROPRIATIONS PROCESS.
ON MAY 2 THE OFFICE OF
MANAGEMENT AND BUDGET RELEASED
THE PRESIDENT'S TOP LINE
DISCRETIONARY BUDGET REQUESTS
FOR 2026 OUTLINES HIGH LEVEL
SPENDING PRIORITIES FOR THE NEXT
FISCAL YEAR.
IN ADDITION, EACH CHAMBER OF
CONGRESS'S APPROPRIATION
COMMITTEE HAS HELD HEARINGS ON
BIOMEDICAL RESEARCH AND RELATED
ACTIVITIES.
THE SENATE COMMITTEE ON LABOR
HAS SCHEDULED A HEARING TOMORROW
WITH THE HHS SECRETARY TO
DISCUSS THE 2026 BUDGET.
RELATEDLY IN MID APRIL THE HOUSE
VOTED TO PASS A BUDGET
RESOLUTION THAT HAD PREVIOUSLY
PASSED IN THE SENATE, UNLOCKING
THE RECONCILIATION PROCESS AND
SETTING THE OVERALL FRAMEWORK
FOR FUTURE LEGISLATIVE ACTIVITY
INCLUDING THE FISCAL YEAR 2026
APPROPRIATION PROCESS.
LE THE 119th CONGRESS HAS
INTRODUCED 45 BILLS ON TOPICS OF
INTEREST TO NIH AND NLM.
THESE SEVEN HAVE BEEN INTRODUCED
RELATED TO BIOTECHNOLOGY OR
HEALTH CARE INNOVATION AND
ACCESS.
SEVEN INTRODUCED THAT FOCUS ON
AI GOVERNANCE AND DATA.
10 BILLS ON TOPICS BROADLY
DIRECTED TO SCIENTIFIC RESEARCH
AND OVERSITE AND REFORM.
AND 21 NEWLY INTRODUCED BILLS
ARE MORE BROADLY APPLICABLE TO
THE EXECUTIVE BRANCH.
THE LAST THING I WANTED TO
HIGHLIGHT, PART OF THE RESULTS
OF THE RESEARCH FROM THE AGENCY
FUNDS AND YOU MAY BE AWARE, MID
DECEMBER NIH RELEASED 2024
PUBLIC ACCESS POLICY WHICH AIMS
TO ACCELERATE THE RESULTS OF
NIH-FUNDED RESEARCH FOR THE
REMOVAL OF THE 12 MONTH EMBARGO
FUNDING.
NIH RECENTLY ANNOUNCED THE
POLICY WILL BE EFFECTIVE ON JULY
1 TO ENABLE ACCESS TO NIH
SUPPORTED FINDINGS.
IN ADDITION TO THE UPDATED
POLICY, NIH ISSUED SUPPLEMENTAL
GUIDANCE ON RIGHTS AND
PUBLICATION COSTS.
WITH THAT, I WOULD LIKE TO TURN
THE DISCUSSION OVER TO STEVE.
>> THANK YOU, TERESA.
I BELIEVE WE ARE A LITTLE OVER
TIME.
WE HAVE 10 MINUTES FOR
DISCUSSION AND OPEN THE FLOOR
FOR QUESTIONS.
>> THANK YOU, STEVE, I WANT TO
COMMEND YOU, THE NLM LEADERSHIP
TEAM, AND THE AMAZING WORK YOU
ARE DOING IN THIS CHALLENGING
PERIOD.
EXCITING ON THE INTRAMURAL
RESEARCH FRONT AND EXTRA MURAL
AND UNIQUE SERVICES NLM IS
PROVIDING.
I WANT TO COMMEND YOU ON THAT.
JIM HAS A QUESTION.
>> YES.
FIRST I WANT TO SECOND LOLA'S
ENTHUSIASM FOR YOUR SERVICE
PERFORMANCE AND REPORT.
MY QUESTION IS OVER THE LAST 100
DAYS OR SO, THERE HAS BEEN A LOT
OF FEDERAL ACTIVITY TO REMOVE
DATA FROM THE INTERNET.
OF COURSE, IT SPARKED A LOT OF
PARANOIA.
THERE WAS A BRIEF OUTAGE OF
PUBMED.
I WOULD LIKE TO KNOW IF THE NLM
HAS HAD TO REMOVE ANY
INFORMATION FROM ITS WEBSITES?
>> THAT IS A GREAT QUESTION,
JIM.
I'M HAPPY TO SAY NO.
THE INTERRUPTION WITH PUBMED WAS
NOTHING TO DO WITH OUR SYSTEMS.
IT WAS A FAULTY ROUTER I'M TOLD
WAS DOING DISRUPTIONS ON TIMES
AND CREATED AN OVERLOAD.
THAT HAS BEEN FIXED.
I HAD SEVERAL MEETINGS WITH NIH
LEADERSHIP ON DATA RETENTION.
I RECEIVED AFFIRMATIONS FROM ALL
PARTIES THAT OUR STANDARD
PRACTICE OF RECORDING AND
PRESERVING INFORMATION AND
ADDING ADDITIONAL CONTEXT, IF
THERE IS SOME QUESTION ABOUT THE
INTERPRETATION, SUITABILITY OF
ANY PIECE OF DATA OR NFLGS, WE
CREATE NEW RECORDS AND EXPLAIN
THOSE.
YOU DO NOT REMOVE THINGS.
THAT HAS ALWAYS BEEN THE
PRACTICE IN THE LIBRARIES AND
COLLECTIONS.
I'M HAPPY TO REPORT WE ARE STILL
FOLLOWING THOSE ESTABLISHED
PRINCIPLES.
>> WE CAN PROBABLY TAKE ONE MORE
QUESTION SINCE WE ARE A LITTLE
BEHIND ON TIME.
ARE THERE ANY OTHER QUESTIONS?
>> I WILL GO.
HAS THERE BEEN ANY IMPACT ON THE
NIH DIRECTOR OVER THE LAST --
WITH ALL OF THE UNCERTAINTY AND
ONGOINGS IN D.C.
HAS THAT IMPACTED THE NLM
DIRECTOR IN ANY WAY, THAT
SEARCH?
>> OH, THE SEARCH.
I'M NOT SURE WHAT THE STATUS OF
THE SEARCH IS.
THAT WOULD BE EXECUTIVE
RECRUITING IN BUILDING ONE.
I THINK IT IS THE DIRECTOR'S
PREROGATIVE TO CONTINUE OR
RESTART SEARCHS, BUT I HAVEN'T
RECEIVED ANYTHING PERSONAL ABOUT
THE STATUS OF NLM RIGHT NOW.
I WOULD STAY TUNED AND SEE WHAT
BUILDING ONE IS GOING TO DO.
UNTIL THEN, I'M SERVING UNTIL
FURTHER NOTICE.
>> AND THANK YOU FOR SERVING.
>> AND GLAD TO HAVE YOU.
>> OKAY.
WE'RE GOING TO MOVE ON TO THE
ECONOMETRICS PRESENTATION BY
HEIDI SOFIA.
>> OKAY.
CAN YOU SEE MY SLIDE?
>> YES.
THERE WE GO.
I'M THRILLED TO PRESENT THIS TO
YOU TODAY.
I'M GOING TO TELL YOU ABOUT AN
ECONOMETRICS PROJECT WE ADVISED
TO MEASURE THE IMPACT OF NLM
DATA RESOURCES.
SO A BRIEF OUTLINE OF WHAT I'M
GOING TO TELL YOU ABOUT.
FIRST OF ALL, WHAT IS
ECONOMETRICS?
AND SECOND WHAT DO WE HOPE TO DO
WITH IT?
WHICH IS TO MEASURE THE VALUE OF
SCIENTIFIC DATA, WHICH IS
SOMETHING THAT WE ALL KNOW
INTUITIVELY AND APPRECIATE, BUT
CAN BE SLIPPERY WHEN IT COMES
DOWN TO QUANTITATIVE AND
OBJECTIVE MEASURES.
AND THREE DECISION TOOLS FOR
SUSTAINABILITY AND HOW
ECONOMETRICS CAN GIVE US BRAND
NEW AND IMPACTFUL DECISION TOOLS
THAT WILL HELP WITH THE
SUSTAINABILITY OF OUR LARGE
SCALE AND WIDELY USED DATA
RESOURCES.
AND FINALLY, GETTING AND
OVERVIEW OF WHAT THESE PROJECTS
LOOK LIKE AT NCBI, PILOT
PROJECTS IN ECONOMETRICS WE HAVE
BEGUN.
SO WHAT IS ECONOMETRICS?
WELL, IT IS A BRANCH OF
ECONOMICS.
IT IS APPLIED MICROECONOMICS.
AND IT HAS GROWING IMPORTANCE IN
THE INFORMATION ECONOMY AND THIS
IS BECAUSE THE INFORMATION
ECONOMY HAS GROWING IMPORTANCE
IN SOCIETY AND WHAT WE PURSUE
AND THE SCIENCE THAT WE DO.
IT'S BASED ON NEW STATISTICAL
AND MATHEMATICAL APPROACHES THAT
ARE ABLE TO TAKE ADVANTAGE OF
ANALYTICAL METHODS WITH LARGE
AMOUNTS OF DATA AND THAT'S THE
KIND OF KEY INSIGHT ON THIS
BRANCH OF METHODS WHICH IS
RELATIVELY NEW, IS TO TAKE
ADVANTAGE OF WHAT IS CALLED
NATURAL EXPERIMENTS.
AND ALSO DEVICING CLEVER AND
IMPACTFUL MAPPING METHODS WHICH
I WILL TELL YOU A LITTLE MORE
ABOUT LATER.
THESE CAN BE USED IN POWERFUL
WAYS TO MAKE PREDICTIONS IN
ECONOMIC OUTCOMES, HOW SCIENCE
CONNECTS WITH THE LARGER
ECONOMIC ENVIRONMENT, WHICH WE
ARE VERY INTERESTED IN.
AND THESE METHODS BUILD ON THE
2021 NOBEL PRIZE IN ECONOMIC
SCIENCES WHICH WAS REALLY
FOCUSED ON HOW TO USE THESE
NATURAL EXPERIMENTS IN ECONOMICS
BECAUSE IT GIVES YOU A WINDOW ON
TO QUESTIONS THAT YOU OTHERWISE
CAN'T REALLY HOPE TO ADDRESS.
SO NIH, THERE'S BEEN NOT MUCH
USE OF THESE METHODS SO FAR, BUT
THE FEW EXAMPLES THAT ARE
AVAILABLE HAVE BEEN HIGHLY
IMPACTFUL.
IF YOU LOOK AT THE NIH WEB BPAG
ON THE PORTION THAT DESCRIBES
DIRECT ECONOMIC CONTRIBUTIONS OF
NIH BIOMEDICAL RESEARCH, THERE
IS A CITATION TO KIND OF A KEY
ECONOMETRICS STUDY DESCRIBING
PUBLIC R & D INVESTMENTS AND
PRIVATE SECTOR PATENTING AND
EVIDENCE DRAWN FROM NIH
EXPERIENCE.
AND A FEW OTHERS, STARTING WITH
BRUCE WEINSTEIN, AN ECONOMIST AT
OHIO STATE UNIT W -- UNIVERSITY
AND HAS DONE WORK AND
HIGHLIGHTING THIS BECAUSE THIS
FACULTY MEMBER ACTUALLY HAD
QUITE UNIQUE ACCESS TO THE DATA,
NIH DATA THAT ALLOWED HIM TO DO
THESE STUDIES.
SO HE PRODUCED VERY INTERESTING,
VERY IMPACTFUL WORK OUT OF THIS
ACCESS, WHICH REALLY DEPENDED ON
VERY SPECIAL CIRCUMSTANCES.
I'M ALSO NOTING PAPERS BY OUR
NEW NIH DIRECTOR, JAY
BHATTACHARYA, WHO IS A HEALTH
ECONOMIST, INNOVATION.
ONE OF THE MAJOR THEMES DR.
BHATTACHARYA HAS HIGHLIGHTED AS
A GOAL OF NIH.
PUBLISHING IN PNAS AND ECONOMICS
SOURCES.
THEN HIGHLIGHTING ANOTHER
PUBLICATION BY BRUCE WEINBERG.
AND ANOTHER THAT PRESENTS A
VISION HOW NLM WILL EVOLVE IN
AI.
IT DOES REFERENCE THE
BHATTACHARYA AND THE NIH FUNDING
AND THE PURSUIT OF EDGE SCIENCE.
SO HERE I WANT TO GIVE YOU AN
INTUITIVE SENSE OF THE MAPPING
METHODS.
I'M HIGHLIGHTING WORK OF FROM
ABHISHEK NAGARAJ AND MATTEO
TRANCHERO.
# IT IS AN UNDERLYING LANDSCAPE
WE CAN VIEW WITH PATTERNS OF
DATA.
EACH TYPE OF DATA MIGHT GIVE YOU
A PARTICULAR REPRESENTATION OF
THIS REALITY.
SO WE ARE LOOKING AT SCIENTIFIC
PUBLICATIONS, SCIENTIFIC DATA,
GENOMES, SPECIES, INDIVIDUALS,
PRECISION MEDICINE AND THESE
DATA SETS CAPTURE ASPECTS OF THE
REALITY THAT WE'RE INTERESTED
IN.
IT IS VERY MULTIDIMENSIONAL AND
THEY ARE ALSO QUITE IMPERFECT.
SO TRYING TO USE THIS
INFORMATION IN MAKING DECISIONS,
RATIONAL, CAUSALITY-BASED
DECISIONS YOU ARE SUBJECT TO THE
IMPERFECT NATURE OF THIS MAP,
BUT THE TECHNIQUES, THE MAPPING
TECHNIQUES ALLOW YOU TO COMBINE
THESE DIFFERENT TYPES OF
INFORMATION SOURCES AND THEN
USING WHAT IS SOMETIMES CALLED
DIFFERENCE OF DIFFERENCE
METHODS, STATISTICALLY BASED
METHODS TO UNDERSTAND THIS
TERRAIN AND CREATE A BETTER
REPRESENTATION THAT ALLOWS YOU
TO MAKE DECISIONS WITH MORE
CERTAINTY.
THAT IS THE GIST OF IT.
AND SO NATURAL EXPERIMENTS ARE
ALSO AN IMPORTANT PART OF IT.
I WANT TO SHOW YOU ANOTHER
EXAMPLE OF THESE METHODS THAT IS
QUITE NICELY CONCRETE BECAUSE
WE'LL BE USING THEM IN LESS
CONCRETE METHODS.
BUT SOME OF THE WORK BY THESE
INVESTIGATORS INVOLVE NATURAL
EXPERIMENT CAPTURING SATELLITE
IMAGE DATA OF THE EARTH USING
THE LAND SET TECHNOLOGY AND
COMPARING IN THE NATURAL
EXPERIMENT IN THIS CASE BEING
THE SATELLITE PASSING OVER THE
LAND AND TAKING AN IMAGE WHEN
THERE'S NO CLOUDS THE SATELLITE
PASSING OVER THE SAME AREA AND
TAKING AN IMAGE WHERE THERE ARE
CLOUDS.
THAT CREATES THE BASIS FOR THE
NATURAL EXPERIMENT.
IN ONE CASE YOU HAVE THE
INFORMATION, BUT IN THE OTHER
CASE YOU DON'T HAVE THE
INFORMATION, BUT IT IS
IRRELEVANT TO THE UNDERLYING
REAL WORLD MATH YOU ARE TRYING
TO CAPTURE.
IT IS KIND OF NICE BECAUSE THEY
DEVELOPED THESE METHODS IN THAT
CONTEXT.
IN THIS CASE WITH IMAGES THEY
WERE LOOKING AT MINING FOR GOLD,
SUCCESS RATES IN MINING FOR
GOLD.
WE ARE INTERESTED IN SUCCESS,
NOT SO CONCRETE AS GOLD, BUT THE
GOLD AND THE VALUE OF THE DATA
WE PRODUCE AND MANAGE AND SHARE
WITH THE WORLD AT NLM.
SO THERE'S KIND OF THEORETICAL
AND APPLIED BASIS FOR THESE
METHODS THAT THESE LEADING
RESEARCHERS IN THIS AREA HAVE
DEVELOPED.
SO, OF COURSE, WE ARE PURSUING
THIS BECAUSE WE WANT TO MAKE
BETTER DECISIONS IN ALLOCATING
SUPPORT WITH OUR DATA RESOURCES.
THEY ARE ACTUALLY QUITE
EXPENSIVE AND WE HAVE TO GET
BEYOND THE INTUITIVE SENSE OF
THEIR VALUE AND MAKE MORE
OBJECTIVE DECISIONS ABOUT
SUPPORT BECAUSE AS A KIND OF
INFRASTRUCTURE RESOURCE, IT IS
OFTEN QUITE HARD TO MAKE THOSE
ARGUMENTS.
EVERYBODY UNDERSTANDS IT IS
IMPORTANT, BUT WHEN IT COMES
DOWN TO MAKING TRADEOFF
DECISIONS, THEY ARE VERY
DIFFICULT TO MAKE.
SO WE ARE VERY INTERESTED IN
WHAT KINDS OF EVIDENCE WE REALLY
NEED TO DEVELOP TO SUPPORT
BETTER AND BETTER DECISION
MAKING.
WE BELIEVE ECONOMETRICS CAN
PROVIDE THESE DECISION-MAKING
TOOLS.
AND SO SINCE THESE METHODS ARE
BECOMING SO POWERFUL, I WANT TO
ADDRESS THE QUESTION WHY AREN'T
THEY BEING USED MORE?
WHY HAVEN'T THEY BE USED MORE
THAN THEY HAVE?
IN ONE SENSE IT IS ANALOGOUS TO
THE BIG DATA AREA IN MEDICAL
RESEARCH, CHALLENGES IN THEME
AND VARIATION, TO USE THEM YOU
NEED VERY LARGE AMOUNTS OF DATA
TO GET THE STATISTICAL POWER TO
DISCOVER AND ANALYZE THESE
COMPLEX PATTERNS.
YOU HAVE ISSUES OF INCOMPLETE
META DATA, DATA PROVE NANCE AND
SOFT DOCUMENTATION.
FAIR, SOMETIMES THESE ARE
DESCRIBED AS FAIR DATA ISSUES,
ISSUED OF FINDABLE, ACCESSIBLE,
IS INTEROPERABLE, REPRODUCEABLE
ISSUES OF DATA QUALITY,
INTEGRATION AND ACCESS,
PRACTICAL ACCESS.
AND FINALLY, CONTROLLED ACCESS
DATA RESOURCES.
SENSITIVE HUMAN DATA, ISSUES OF
CONTROLLED ACCESS.
WHAT IS DIFFERENT ABOUT THE
ECONOMETRICS IS IT HAS THE
FEATURE OF INCLUDES
ADMINISTRATIVE DATA.
DATA NOT TYPICALLY SHARED IN THE
BIOMEDICAL RESEARCH ENTERPRISE.
THAT IS THE THEME AND VARIATION
THERE THAT EXPLAINS THE KIND OF
ROADBLOCK, MAYBE SOME OF THE
ROADBLOCKS IN BRINGING THESE
METHODS FORWARD.
AND SO WE WANT TO USE THESE FOR
QUANTITATIVE MEASURES AND CAUSAL
RELATIONSHIPS.
I WANT TO HIGHLIGHT SOME, KIND
OF THREE LENSES THAT WE FEEL WE
CAN BRING TO BEAR WITH
ECONOMETRICS.
FIRST IS SOMETHING THAT IS VERY
FAMILIAR TO US.
WHICH IS THE DIRECT IMPACT OF A
DISCOVERY IN A PUBLICATION OR
PATENT.
YOU MADE A DISCOVERY, YOU
PUBLISHED IT, YOU PATENT IT.
THAT IS THE DIRECT IMPACT, BUT
WITH THE LARGE AMOUNTS OF DATA
AND INCREASINGLY SENSITIVE
METHODS, YOU CAN ACTUALLY
MEASURE INDIRECT IMPACT.
FOLLOW-ON PUBLICATIONS.
WHAT IS THE IMPACT ON A
DISCOVERY ON THE FIELD ITSELF
AND HOW DOES THAT FOLLOW ON IN
TERMS OF OTHER DISCOVERIES AND
HOW DO YOU QUANTIFY THE IMPACT
OF THE INITIAL DISCOVERY?
BUT EVEN MORE INTERESTING IS THE
WHAT YOU MIGHT CALL THE IMPLICIT
IMPACT, WHICH IS THAT DATA, EVEN
IF IT DOESN'T DIRECTLY LEAD TO A
DISCOVERY ITSELF, HAS REAL VALUE
TO PEOPLE AND THIS IS IN, YOU
KNOW, THE DATA ALLOWS YOU TO
DEVELOP METHODS.
THE DATA ALLOWS YOU TO PURSUE
ANGLES THAT DON'T LEAD TO
RESULTS.
THERE IS A NEGATIVE RESULT THERE
IS EXCEEDINGLY IMPORTANT.
THAT IS IMPLICIT.
AND NEGATIVE RESULTS, WE ARE
GE -- BEGINNING TO UNDERSTAND
ARE PART OF THE INCENTIVE AND
RESEARCH ENVIRONMENT THAT WE
NEED TO PAY MORE ATTENTION TO
AND DEVELOP MEASURES OF SUPPORT
AND CREATE THE RIGHT INCENTIVE
SO THIS BROADER MORE FULLER
PICTURE OF THE SCIENTIFIC
RESEARCH ENTERPRISE CAN BE MADE
MORE DEEPLY FUNCTIONAL.
AND SO IN A WAY YOU CAN THINK OF
THIS AS OVERCOMING THE STREET
LIGHT EFFECT.
THESE RESEARCHERS NAGARAJ AND
TRANCHERO HAVE DONE RESEARCH IN
THESE AREAS.
THEY ARE FEW ECONOMISTS PURSUING
THESE TYPE OF METHODS IN THIS
AREA, WHICH IS BIOMEDICAL
RESEARCH.
SO JUST TO MAKE THIS MORE
CONCRETE, SO FOR EXAMPLE, GENES
HAVE DISEASE MUTATIONS AND THESE
ARE IMPORTANT AS DRUG TARGETS.
BUT HOW DO SCIENTISTS ACTUALLY
CHOOSE WHICH GENES TO STUDY WHEN
THEY EXPLORE -- WHEN THEY
DEVELOP THEIR CAREERS AND
EXPLORE BASICALLY ACROSS GENE
SPACE?
AND, OF COURSE, IN HUMANS THAT
IS ROUGHLY 19,000 GENE
POSSIBILITIES.
SO DO THEY INVESTIGATE KNOWN
TARGETS?
DO THEY ADOPT NOVEL TARGETS?
DO THEY LIMIT THEMSELVES TO
ESTABLISHED MODEL ORGANISMS OR
DO THEY CREATE NEW MODEL
ORGANISMS THAT MIGHT BE OPTIMAL?
MANY OF US HAVE AN INTUITIVE
SENSE OF WHAT PEOPLE DO, BUT YOU
CAN CREATE AN OBJECTIVE MEASURES
OF WHAT PEOPLE DO AND ASK -- AND
ONE OF THE QUESTIONS THAT HAS
BEEN ASKED IN THE SPACE IS DOES
THE INCENTIVE STRUCTURE OF
SCIENCE, WHICH IS THE FOCUS ON
CITATIONS AND IMPACT FACTOR AND
JOURNAL CRITERIA CREATE
INCENTIVES THAT DRIVE OR HERD
SCIENTISTS AWAY FROM MAYBE MORE
INNOVATIVE RESERVE OR MORE
IMPACTFUL RESEARCH INTO MORE
ESTABLISHED AREAS BECAUSE THERE
ARE MORE COMMUNITIES.
IT IS SURVIVAL EFFECT.
SOME WORK HAS BEEN DONE IN THIS
AREA.
I WILL HIGHLIGHT THIS
PUBLICATION BE BHATTACHARYA
AGAIN THAT SUGGESTS THAT
CITATIONS IN A FIELD ARE SHAPED
BY HOW CROWDED THE FIELD IS.
YOU CAN BRING THIS SPOTLIGHT TO
ASK THIS KIND OF QUESTION.
SO HERE'S OUR RESEARCHERS THAT
WE'RE SO EXCITED ABOUT.
THE YOUNG RESEARCHERS IN
ECONOMETRICS.
NAGARAJ FROM THE UNIVERSITY OF
CALIFORNIA PRESTIGIOUS HAAS
SCHOOL OF BUSINESS AND MATTEO
TRANCHER FROM WARTON SCHOOL OF
BUSINESS, UNIVERSITY OF
PENNSYLVANIA.
INNOVATION, AI TECHNOLOGY
STRATEGY, ORGANIZATIONAL
LEARNING, DATA-DRIVEN DECISION
MAKING AND I'M SPEAKING FROM
NCBI POINT OF VIEW AT THE
NATIONAL LIBRARY OF MEDICINE
GENERALIZABLE TO ONE NLM.
WHO WE ARE AT THE INTERSECTION
OF DATA AND KNOWLEDGE, WE ARE
ABOUT PROVIDING THESE RESOURCES
FOR OPEN SCIENCE AUND ALL THE
THINGS THAT WE ARE COMMITTED TO
AND EXPERT AT IN TERMS OF
PRESERVING DATA, ACCEPTING DATA,
PROCESSING, TRANSFORMING IT,
ORGANIZING IT TO PROVIDE EASY
ACCESS, PROVIDING SERVICES,
BEING VERY OUTWARD LOOKING TO
THE PUBLIC AND ALSO PROVIDING
ATTRIBUTION TO SUPPORT
ACKNOWLEDGEMENTS AND SCIENTIFIC
INTEGRITY.
THIS IS OUR INTERSECTION BETWEEN
DATA AND KNOWLEDGE AND THE WORK
WE DO FOR THE PUBLIC GOOD TO
EMPOWER BIOMETRIC DISCOVERY.
THE HIGH LEVEL OVERVIEW OF OUR
DATA IS THE INTERSECTION BETWEEN
LITERATURE AND MOLECULAR AND
CLINICAL DATA WITH MANY CROSS
CONNECTIONS, DEEP AND
INTERSECTING CROSS CONNECTIONS
WHERE EXTRAORDINARY NUMBERS OF
USERS ON A DAILY BASIS AND THE
LITERATURE AND VERY LARGE
NUMBERS ON THE MOLECULAR
CLINICAL SIDE, THE DATA SIZES, A
MERE TERABYTES FOR LITERATURE
AND 100PETABYTSS FOR MOLECULAR
AND CLINICAL DATA.
THE SCIENTISTS IN INDIVIDUAL
BASED EXPLORATION TO INCREASING
AN INEXCITING AND POWERFUL
OPPORTUNITIES USING ARTIFICIAL
INTELLIGENCE AND LARGE LANGUAGE
MODELS AND MACHINE LEARNING IN
POWERFUL WAYS.
AND SO JUST TO EMPHASIZE OUR
SCALE, SO ON A DAILY BASIS, OUR
SCALE IS COMPARABLE MEASURE IS
WHAT THE CERN DATA PROCESSES.
A PETABYTE A DAY.
THESE SYSTEMS ARE EXPENSIVE AND
THAT IS DRIVING OUR GOAL, THE
ECONOMETRICS PROJECT.
WE IMPLEMENTED THIS PILOT AS A
SUBCONTRACT FOR VARIOUS REASONS
AND THAT ENABLES US TO BRING IN
LEADING EXPERTISE FOR TARGETS OF
OPPORTUNITY TO ADVANCE THE
DESIGN AND FUNCTION OF OUR
PRODUCTION SYSTEMS AND USING
NATURAL EXPERIMENTS THAT WE,
THAT OCCUR WITHIN OUR DATA
RESOURCES THAT WE CAN DEVISE.
SO IN DOING THIS, WE HAVE
BROUGHT IN A CONTRACTOR A
PREDOCTORAL RESEARCHER, IN
ECONOMICS IS THE GO-TO PERSON TO
DO THIS WORK WITH MATTEO
TRANCHERO AND COLLABORATING WITH
NAGARAJ.
SO THIS CONTRACTOR IS FOCUSED ON
THESE MEASURES AND THE FRAMEWORK
FOR USE WITH THE STARTING WITH
DB GAP, SRA AND GENE
COLLECTIONS.
HE BRINGS A VERY STRONG
BACKGROUND IN THIS.
THE DB GAP EXPERIMENT.
BASICALLY THE DB GAP EXPERIENCE
IS RELATIVELY LOW HANGING FRUIT
IN TERMS OF THE DESIGN AND
APPLICATION OF THESE METHODS AS
A PILOT TO APPLY THESE METHODs
THAT IS BECAUSE IT HAS 15 YEARS
OF DATA AND RESULTS.
THE DATA LEADS TO THERAPEUTIC
APPLICATIONS AND PATENTS.
THE INTERSECTION OF THE GENOMIC
DATA AND THE EXPRESSION IN HUMAN
SYSTEMS.
BUT ALSO IS IT CONTROLLED ACCESS
AND CONTROLLED ACCESS MEANS YOU
CAN MEASURE THE ACTUAL USAGE OF
THE DATA IN FAIRLY DIRECT WAYS.
AND SO THE GOAL IS TO BRING
THESE MEASURES IN THIS FRAMEWORK
FOR THE DIRECT, INDIRECT AND
IMPLICIT IMPACT OR NEGATIVE
RESULTS IMPACT THAT I DESCRIBED
BEFORE.
SO DOING THIS WORK INVOLVES
ADAPTING THE METHODS THAT WERE
ACTUALLY DEVELOPED IN A PREVIOUS
WORK BY THESE RESEARCHERS WITH
THE U.S. CENSUS BUREAU WITH THE
FEDERAL STATISTICAL DATA CENTERS
AND APPLYING IN BIOMEDICAL
RESEARCH CONTEXT.
CENSUS DATA IS EXTREMELY
SENSITIVE DATA.
THIS IS A STATE OF THE ART
BLUEPRINT FOR HOW TO CALCULATE
COST-BENEFIT ASSESSMENTS.
THEY NEEDED TO ASSEMBLE RELEVANT
DATA FROM PUBMED, NIH, ICITE,
AND OTHER AUTHORITIES TO CLEAN
THE DATA AND CALCULATE SCORES
AND OTHER STATISTICAL MEASURES.
WITH THE INFORMATION IN DB GAP,
WE DEIDENTIFY THE RESEARCHERS
WHO SUBMITTED THE DATA.
DATA THAT IS NOT PUBLIC WE
DEIDENTIFY THE RESEARCHERS IN
THE ADMINISTRATIVE SYSTEM UNDER
STUDY.
THEN THESE RESEARCHERS, THEY CAN
CONNECT THE RESEARCHERS WITH
STATISTICAL MEASURES THAT HAVE
BEEN PRECALCULATED THAT ARE
TARGETED AT THE DBGAP ACCESS
REQUEST.
APPROVED ACCESS REQUEST AND
ULTIMATELY REJECTED AND THAT IS
THE NATURAL EXPERIMENT WHERE
RESEARCHERS COME IN ROUGHLY
COMPARABLE, THEY APPLY FOR DATA,
SOME ARE APPROVED, SOME ARE NOT
APPROVED AND THAT CREATES THE
BASIS FOR WHAT THEY UNDERSTAND
AS THE NATURAL EXPERIMENT.
AND THEN THE USEFULNESS OF THIS
TYPE OF INFORMATION IN A LARGER
EFFORT AT NIH TO UNDERSTAND THE
SUSTAINABLE OF DATA RESOURCES,
BUILDING OFF OF A NIM -- NLM
CO-SPONSORED BY NATIONAL
ACADEMIES OF SCIENCE LIKE CYCLE
DECISIONS FOR BIOMEDICAL DATA,
THE CHALLENGE OF FORECASTING
COSTS.
AND THE DIFFERENT PARAMETERS OF
RELEVANCE.
THE BUSINESS FRAMEWORK, CORE
METRICS, COST DRIVERS,
GOVERNANCE STRUCTURES,
INFRASTRUCTURE DESIGN, DATA
MANAGEMENT SPECIFICS, SECURITY
AND PRIVACY AND SUSTAINABILITY
PLANNING IN TERMS OF ROLES AND
RESPONSIBILITIES.
AND SO THE NEXT PILOT THAT IS ON
THE RADAR IS INVOLVING THE
SEQUENCE READ ARCHIVE.
THIS IS SUCH A BUHL METAPHOR
WHAT SRA DOES AND LEADS INTO THE
TOPIC YOU WILL HEAR NEXT WHERE
YOU TAKE A TEXT, YOU SHRED IT,
REASSEMBLE IT AND THE SHREDDED
DATA IS SRA.
THE REASSEMBLED DATA REPRESENTED
GENBANK.
THIS METAPHOR IS MORE APPLICABLE
TO SINGLE CELL DATA.
IF YOU WERE TALKING ABOUT
REGULAR SEQUENCING PROJECTS, YOU
WOULD NEED A STACK OF 30 COPIES
OF THE ORIGIN OF SPECIES.
YOU ARE NOT JUST SHREDDING ONE
COPY.
YOU WOULD BE SHREDDING 30 COPIES
OF THE ACTUAL APPLICATION OF THE
MED FORE TO GENOME SEQUENCES
UNLESS IT IS SINGLE CELL
SEQUENCES.
THIS EFFORT, WE ARE PROCEEDING
CAREFULLY AND MINDFULLY BECAUSE
WE HOPE TO BUILD A TRUSTWORTHY
FOUNDATION FOR THIS TYPE OF
EFFORT FOR ECONOMETRICS AT NIH
WITH RESPONSIBLE USE OF DATA
RESOURCES, THE IMPORTANCE OF
BUILDING AND MAINTAINING PUBLIC
TRUST, CREATING A SOLID LEGAL
AND ETHICAL FOUNDATION AND
BRINGING FORWARD OUR VALUES OF
QUALITY AND PUBLIC SERVICE.
I SEE THAT I'M RIGHT ON TIME AND
I'LL END WITH THAT.
THANK YOU.
>> THANK YOU DR. SOFIA FOR THIS
ENLIGHTNING PRESENTATION.
THE DISCUSSIONS FOR THIS WOULD
BE MITCHELL KATZ AND MAICHOU
LOR.
>> HI.
THIS IS MITCH.
JUST COMING OFF OF MUTE.
WELL, I VERY MUCH APPRECIATE IT
BECAUSE I THINK WE ARE IN AN
ENVIRONMENT WHERE UNDERSTANDS
THE COST EFFECTIVENESS OF
DIFFERENT INTERVENTIONS IS SO
IMPORTANT.
I THINK IT IS ESPECIALLY TRUE
BECAUSE THE HEALTH CARE COSTS IN
OUR COUNTRY KEEP RISING, BUT OUR
HEALTH INDICATORS DO NOT KEEP
RISING.
AND SO I WONDER IF PEOPLE
THOUGHT -- IF YOU THINK ABOUT
HOW A GREATER FOCUS ON
ECONOMICS, ECONOMIC THEORY CAN
HELP US TO GET A BETTER VALUE
FOR OUR HEALTH CARE DOLLAR.
>> OH, ABSOLUTELY.
I THINK THAT AS THESE METHODS
PERMEATE, TO TAKES A SPECTS OF
OUR HEALTH SYSTEM, SOME LESS
RELEVANT TO HOW HEALTH CARE IS
PROVIDED TODAY.
IT IS A GREAT OPPORTUNITY FOR US
TO CREATE THIS APPROACH, THIS
WAY OF WORKING, THIS WAY OF
THINKING WHERE WE ARE ABLE TO BE
MUCH MORE OBJECTIVE AND TO SHOW
EVIDENCE FOR THE CAUSAL
CONNECTION.
SO WE REALLY DO SEE THIS AS THE
VERY BEGINNING OF THE UTILITY OF
THESE MEASURES AND BEING ABLE TO
CONNECT THE KIND OF RESEARCH
SIDE TO THE DELIVERY AND CARE
SIDE IS JUST A TREMENDOUS
OPPORTUNITY AND VERY EXCITING
POTENTIALLY.
>> THAT'S GREAT.
>> THANK YOU.
I THINK THAT WAS A VERY NICE
SEGUE TO WHAT I'M GOING TO ASK
YOU NEXT.
I THINK THIS IS A TREMENDOUSLY
GREAT APPROACH AND METHODOLOGY.
I'M CURIOUS IF THE TOOLS OR
FRAMEWORK WILL BE SHARED WITH
THE PUBLIC OR STAKEHOLDER TO
ENSURE THE IMPLICATIONS OF THESE
TOOLS ARE PRACTICAL.
>> CERTAINLY THE TOOLS DEVELOPED
AND THE FRAMEWORK, WHAT WE ARE
CALLING THE ANALYTICAL
APPROACHES, CERTAINLY THIS IS
ALL GOING TO BE MADE AS WIDELY
AVAILABLE FOR THE PUBLIC AS
POSSIBLE.
IT IS A BIT ON THE RESEARCH
SIDE, BUT I THINK THE REAL
DRIVING INTENT HERE IS
PRACTICAL.
IT IS THE IDEA OF REALLY GETTING
THE BEST OUTCOMES FOR PEOPLE
THAT ARE POSSIBLE AND
UNDERSTANDING WHY YOU MAKE
DECISIONS.
AND NOT JUST KIND OF MAKING
DECISIONS BY THE SEAT OF YOUR
PANTS, WHICH SOMETIMES IS, YOU
KNOW, IS GOOD AND SOMETIMES IS
BAD.
BUT JUST BRINGING IT TO A MUCH
MORE OBJECTIVE BASIS.
I THINK OUR GOAL HERE IS REALLY
IMPROVING SYSTEMS AND IMPROVING
OUR ABILITY TO HAVE MORE IMPACT
BY BEING EFFICIENT AND
RESPONSIBILITY WITH THE
RESOURCES WE ARE GIVEN AND
UNDERSTANDING, YOU KNOW, HOW TO
DO THAT BEST.
SO IT IS THIS IDEA DATA LIFE
CYCLE AND SYSTEMS LIFE CYCLE
AND, YOU KNOW, GETTING AS MUCH
INNOVATION OUT OF ANY PARTICULAR
INVESTMENT AND GETTING THE
BENEFIT OUT OF ANY PARTICULAR
INVESTMENT AS POSSIBLE.
SO I THINK THAT IS THE DRIVING
INTEREST.
>> THANK YOU.
>> ARE THERE OTHER QUESTIONS
FROM BOARD MEMBERS?
PHILLIP.
>> YEAH.
SEE IF I CAN GET THIS.
FIRST OF ALL, THANK YOU FOR
MAKING THIS UNDERSTANDABLE TO
THE COMMONS.
I TRY TO LISTEN TO MARKETPLACE
EVERY DAY, BUT SOMETIMES IT GOES
OVER MY HEAD.
THANK YOU FOR THE WAY YOU WERE
ABLE TO PRESENT THIS.
I AM CURIOUS THOUGH ABOUT TIME
AND HOW -- AND WHAT RELATIONSHIP
THAT CAN BRING TO VALUE.
SO IN THESE MODELS.
IF IT TAKES, THE OLD SAYS 70
YEARS FROM RESEARCH TO PRACTICE,
ADDITIONAL COST OF STORAGE OF
DATA, BUT IF WE ARE SPEEDING UP
THE TIME THAT DATA IS COMPUTED,
PROCESSED AND PRESENTED, FDA
APPROVAL, ET CETERA, SO BY THE
TIME IT GOES THROUGH THE
APPROVAL PROCESS, IS THERE SOME
SORT OF RELATIONSHIP THAT YOUR
MODELS OR THE BERKELEY FOLKS, IS
THAT TAKEN INTO CONSIDERATION AS
WELL?
>> I THINK THEY ACTUALLY
REQUIRE -- TIME HELPS ILLUCIDATE
THE PATTERNS.
THAT MAKES THE DB GAP PILOT
ATTRACTIVE AS A PILOT BECAUSE
THE LENGTH OF EXPERIENCE TO
HAVE -- TO SEE THE RESULTS
UNFOLD, IF YOU ARE TALKING ABOUT
TIME, IN A WAY YOU CAN ALSO TALK
ABOUT THE TIME OF RESEARCHERS
THAT ARE SPENT IN COMING TO
TERMS AND GRAPPLING WITH DATA.
IF EVERY SINGLE RESEARCHER HAS
TO CLEAN UP DATA AND PREPROCESS
IT AND DO KIND OF THE SAME
THINGS, WORKING WITH IMPERFECT
DATA.
THAT IS A LOT OF TIME THAT IS
ACCRUED IN THE COMMUNITY, BUT IF
THAT IS DONE MORE CENTRALLY,
THEN THAT CAN BE TIME EFFICIENT
IN TERMS OF DOING IT ONCE AND
THE RESULT IS SHARED WITH
EVERYBODY.
SO THERE'S LOTS OF DIFFERENT
WAYS TIME CAN COME INTO THE
EQUATION.
IT IS VERY MUCH THE CASE THAT
THESE RESEARCHERS ARE VERY
COMMITTED TO DECIPHERING THE
FOLLOW-ON EFFECTS, THE
LONGITUDINAL EFFECTS.
AS YOU LIKELY KNOW, WE HAVE NOT
BEEN AS STRONG IN TERM OF
LONGITUDINAL FOLLOW-UP AS WE
MIGHT WISH WE WERE.
THE RELATIVELY FEW STUDIES THAT
HAVE LONG LONGITUDINAL TRACKS
ARE REALLY VALUABLE FOR THAT
VERY REASON.
SO I THINK THAT YOU'RE
HIGHLIGHTING TIME, AND IT IS
REALLY IS AN INSIGHTFUL ASPECT
OF THIS, IS HOW TO MAKE THAT
WORK FOR US.
HOW TO SPEED UP THAT LONG TIME
FRAME BETWEEN INITIAL DISCOVERY
AND ACTUAL TRANSLATION TO THE
PERSON IN A HOSPITAL SETTING, IN
A NURSING SETTING, TO THE ACTUAL
PEOPLE INVOLVED.
BECAUSE THAT IS REALLY OUR GOAL.
THAT IS REALLY OUR TARGET, IS TO
MAKE THIS DATA MAKE A DIFFERENCE
IN PEOPLE'S LIVES.
>> CHRIS.
>> YEAH.
SO DR. SOFIA, THANK YOU FOR
THAT.
IT IS ACTUALLY A REALLY
AMBITIOUS RESEARCH PROGRAM YOU
ARE LAUNCHING.
I APPLAUD YOU FOR
CONCEPTUALIZING IT SO WELL.
I WANT TO TOUCH ON THE POINTS
YOU WERE MAKING EARLIER ON.
MITCH TOUCHED ON THIS THE U.S.
HOE
HEALTH IS IN DECLINE.
ACROSS ALL AGE GROUPS.
COSTS ARE GOING UP.
IN AN ERA WHERE WE ARE TRYING TO
REACT TO CONCEPTS THAT ARE BEING
DISCUSSED AT THE FEDERAL LOVELL,
LIKE EFFICIENCY, STEWARDSHIP AND
IMPACT, I THINK AN APPROACH TO
UNDERSTANDING THE IMPACT OF
NIH-FUNDED RESEARCH IS WELCOME.
YOU TALKED ABOUT DIRECT AND
INDIRECT EFFECTS.
I THINK THAT IS A GREAT START.
I ALSO WONDERED WHETHER YOU
MIGHT GO A STEP FARTHER TO
ACTUALLY DEVELOP A FRAMEWORK FOR
EVALUATING NIH RESEARCH IMPACT.
YOU MENTIONED PUBLICATIONS,
PATENTS, OTHER INTELLECTUAL
PROPERTY.
I THINK THAT IS IMPORTANT, BUT
WITH THE ECONOMISTS YOU ARE
BRINGING ON TO THE TEAM, THE
IMPACT OF NIH ON THE ECONOMY
ITSELF AND ON JOBS, THOSE
STUDIES ARE PRETTY SPARSE.
I WOULD LOVE TO SEE THAT KIND OF
ECONOMIC DOMAIN.
LET'S NOT FORGET THE HEALTH
DOMAIN.
SO HOW DO WE THINK OF THE IMPACT
OF NIH RESEARCH ON BOTH
SHORT-TERM HEALTH AS WELL AS
LONG-TERM HEALTH?
THAT WOULD PRIORITIZE RESEARCH
ON KIDS, HEALTH THAT MAY BE
DOWNSTREAM FOR SEVERAL DECADES.
THE FOURTH DOMAIN, YOU MENTIONED
ALL OF THIS, DATA REUSE.
I THINK THERE IS VALUE THERE.
I WANT TO SUGGEST THIS IDEA OF
UNDERSTANDING THE IMPACT OF NIH
RESEARCH IS IMPORTANT.
I'M ON A NATIONAL ACADEMY OF
MEDICINE PANEL TRYING TO
EVALUATE THIS FOR PEDIATRICS.
WHAT WE HAVE IS LIMITED.
I WOULD LOVE TO SEE THE NLM TAKE
SOME LEADERSHIP IN THIS SPACE.
>> THAT IS VERY INTERESTING.
THANK YOU.
>> STEVE.
>> YEAH.
THANKS.
I JUST WANTED TO MAYBE ADD TO
HEIDI'S GREAT DESCRIPTION OF
THIS.
WE APPROACHED THIS INITIATELY
FROM A LENS OF SUSTAINABILITY
WITH OUR RESOURCES, WE ARE
TRYING TO UNDERSTAND WITH OUR
LIMITED BUDGET OF DOLLARS WHAT
IS THE RIGHT STRATEGIC
INVESTMENT OF ALL THE CHOICES OF
DATA.
WOE ARE LOOKING BEYOND
PUBLICATIONS AND BIBLLIOMETRIC
MEASURE.
ARE THERE OTHER SIGNATURE CALS
OF PRODUCTIVITY RELATIVE TO
NATIONAL INTEREST OR NLM
PRIORITIES WE COULD TEASE OUT OF
THE DISTRIBUTED FINSER PRINTS OF
ECONOMIC ACTIVITY PRODUCED BY
USE OF THE DATA AND TRACE THAT
BACK TO SOME SORT OF VALUE
STATEMENT.
IT IS EXISTENTIAL FOR MLA.
WE DON'T KNOW WHO IS DOING WHAT.
THERE IS NOT A CLEAR LINE OF
SIGNAL SO OUR THINKING AND OUR
STRATEGY IS THAT THIS BECOMES A
FRAMEWORK TO START MAYBE
SYSTEMATICALLY UNDERSTANDING THE
WHOLE RAFT OF NLM PRODUCTS AND
OFFERINGS.
WE TRY TO START WITH SIMPLE ONES
WITH CONNECTIONS WITH USAGE,
VALUE, ADMINISTRATIVE DATA AND
WORK OUT FROM THERE.
ALL OF WHICH IS TO BE A TOOL IN
SERVICE TO UNDERSTANDING WHAT IS
THE EFFICIENT AND EFFECTIVE
PROGRAMMING?
ARE THERE ADJUSTMENTS WE SHOULD
MAKE?
SHOULD WE SUNSET?
ARE THERE THINGS IN AN AREA WE
ARE NOT DOING THAT WE SHOULD BE.
TRYING TO BRING THAT LAYER OF
PRODUCTIVITY INTO THE DISCUSSION
IS A CHALLENGE FOR US AS A
LIBRARY SERVICE AND INFORMATION
SERVICE.
I'M HOPEFUL WE CAN GET THIS
SEEDED WELL.
IT WON'T JUST BE NLM.
WE HAVE A WHOLE ECOSYSTEM OF
DATA SYSTEMS AND INFORMATION
SYSTEMS THAT NIH SUPPORTS THAT
MIGHT BE APPROPRIATE OR
ALIGNABLE WITH SOME OF THESE
METHODS.
AS A GENERAL RULE AROUND
SUSTAINABILITY, WE ARE LOOKING
TO SEE IF WE ARE MAKING THE BEST
IMPACTFUL CHOICES AS PROGRAM
MANAGERS.
THAT IS NOT TO DIMINISH THE
IMPACT OF NIH RESEARCH
GENERALLY.
IT IS A GREAT GOAL.
I THINK THIS IS A SERVICE, A
STEP IN SERVICE TO THAT LARGER
GOAL.
BUT THERE ARE I THINK
DELIVERABLES WE REALLY NEED TO
GET AROUND THE RESOURCES ITSELF,
THE PRODUCTS AND OFFERINGS,
RATHER THAN GRANULAR ARE THESE
PEOPLE AND TOPICS IN RESEARCH
THE RIGHT THING.
IS THE SERVICEOVER THIS OFFERING
FRAMED CORRECTLY?
IS IT OFFERED CORRECTLY?
IS IT MEANINGFUL FOR USE.
THAT IS THE STRATEGIC PILOTS WE
ARE TRYING TO PUT OUT THIS YEAR.
HEIDI, CORRECT ME IF I'M WRONG.
>> I HAVE A QUESTION.
THANK YOU SO MUCH DR. SOFIA AND
STEPHEN FOR GIVING THE
BACKGROUND ON WHAT YOU ARE
TRYING TO ACHIEVE.
I DON'T KNOW MUCH ABOUT
ECONOMETRICS.
I WONDERED ABOUT THE MISSING
DATA.
SO IN JUST HEAR ME AS I RAMBLE A
LITTLE BIT.
I DID A SUMMARY INTERNSHIP AT
AT&T BELL LABS WAY BACK IN THE
DAY WHEN IT WAS ONE OF THE
PREIMMINENT RESEARCH LABS.
ONE OF THE REASONS IT HAD
IMPACT, PEOPLE LIKE JOHN -- WHO
WROTE THE C PLUS PLUS.
THEY IMPACTED EVERY SINGLE
COMPUTER SCIENCE PROGRAM, BUT IF
YOU HAD SAID DIRECTLY PRODUCT
OR -- IT DIDN'T MAP TO WHAT AT&T
WOULD HAVE SEEN AS ITS MAIN
PRODUCT AND SERVICES.
I WANT TO HAVE YOU GET AT THOSE
KINDS OF INTANGIBLES.
THAT NATIONAL, INTERNATIONAL
IMPACT, THAT IS NOT NECESSARILY
PAPERS OR PATENTS.
HOW DOES IT GET AT THAT MISSING
DATA?
IS
>> OFTEN BASIC RESEARCH IS GOING
TO GIVE YOUR AMAZING SURPRISES
LIKE THE DISCOVERY OF CRISPR.
OR THERE IS A WHOLE LIST OF
EXAMPLES WHERE BASIC RESEARCH
JUST TOOK HOLD AND CREATED A
WHOLE NEW OPPORTUNITY.
SO THIS IS NOT NECESSARILY GOING
TO DIRECTLY SHOW YOU THAT, WHERE
THE SERENDIPITY DISCOVERIES ARE,
BUT IF YOU HAVE A BETTER MAP YOU
WILL MAYBE NOT GET LOST AS
OFTEN.
MAYBE THE RIGHT TARGET FOR THE
GOAL.
IF YOU ARE ABLE TO NOT GET LOST
AS OFTEN, MAYBE IT IS TRUE YOU
DON'T WANDER OFF AND DISCOVER
THE THING YOU NEVER EXPECTED,
BUT MAYBE YOU WON'T BE GOING IN
COMPLETE CIRCLES ALL THE TIME.
I DON'T KNOW IF THAT IS A VERY
GOOD ANSWER.
I DON'T THINK THESE TECHNIQUES
CAN DO EVERYTHING WE NEED
SCIENCE TO DO.
IT IS NOT GOING TO BE A MATTER
OF AUTOMATING AND PROGRAMMING
THE DISCOVERY PROCESS.
IT IS JUST A TOOL AND ANY TOOL
NEEDS TO BE USED PROPERLY.
>> THANK YOU.
I APPRECIATE THAT.
SO WE HAVE A 10-MINUTE BREAK
FROM 11:35 TO 11:45.
8:45 FOR THOSE OF US ON THE WEST
COAST.
SO SEE YOU BACK AT 11:45.
SO IF EVERYONE IS BACK, I WILL
GO AHEAD AND GET STARTED.
I WANT TO SAY GOOD MORNING, GOOD
AFTERNOON, WHEREVER YOU ARE, AND
I WANT TO THANK YOU FOR THIS
OPPORTUNITY TO SPEAK WITH YOU
TODAY.
MY NAME IS VALERIE SCHNEIDR AND
I'M THE ACTING CHIEF AT THE
NCBI, THE INFORMATION
ENGINEERING BRANCH MANAGING A
SUITE OF FREEDOMY AND PUBLICLY
AVAILABLE BIOSERVICE EVERYBODY'S
DATA THAT MAKES INFORMATION
AVAILABLE TO A WIDE RANGE OF
RESOURCES, THESE INCLUDE PUB
MED, GENBANK, NBLAST AND OTHERS.
SO TODAY I WILL TELL YOU ABOUT A
NEWLY CHARTERED WORKING GROUP
THAT WILL BE REPORTING TO THE
BOARD OF REGENTS AND TO YOU HOW
MEMBERS OF THE BOARD WILL BE
ABLE TO CONTRIBUTE TO THE
SUCCESS OF THE WORKING GROUP AND
TO THE SUSTAINABILITY OF THE
SEQUENCE READ ARCHIVE OR SRA
WHICH IS ITS CHARGE.
I WILL BEGIN TODAY WITH A BRIEF
OVERVIEW OF THE SRA AND AN
ONGOING MULTIYEAR EFFORT TO
STRAY JECTORY STIGEICALLY
TRANSFORM THIS IMPORTANT
RESOURCE THAT SHOULD RESULT IN
AN INTENTIONAL, CONNECTIBLE,
COMPUTATIONALLY EXTENDIBLE DATA
RESOURCE THAT MEETS THE NEEDS OF
THE NIH RESOURCE COMMUNITY FOR
YEARS TO COME.
I WILL THEN SPEND MORE TIME
TALKING ABOUT SUSTAINABILITY
PARTICULARLY HOW IT RELATES TO
STAKEHOLDER NEEDS IN THE SRA AND
THEN I WILL DESCRIBE THE SRA
SUSTAINABILITY WORKING GROUP
THAT IS RECENTLY BEEN CHARGED
INCLUDING ITS RELATIONSHIP TO
THIS TRANSFORMATION INITIATIVE
AND TO THE BOARD OF REGENTS.
AND THE SRA IS THE WORLD'S
LARGEST PUBLICLY AVAILABLE
REPOSITORY OF RAW UNASSEMBLED
GENETIC SEQUENCING DATA AND
METADATA DESCRIBING SAMPLES.
THE SRA CONTROLS ASK ACCESS TO
DATA ONLY AVAILABLE TO
AUTHORIZED USERS AND TODAY IT
HAS MORE THAN 35 MILLION
RECORDS, HELD AT MORE THAN 1
TICKET PEDABYTES OF DATA AND
THESE COMPRISE A DIVERSE DATA
SET COURSE FROM ACROSS THE TREE
OF LIFE.
SRA ARCHIVES THE ORIGINAL
INSTRUMENT DATA THAT'S GENERATED
BY HIGH THROUGH PUT SEQUENCING
TEST TECHNOLOGIES AS THE DOCTOR
MENTIONED EARLIER AND PROVIDES
IM PERICAL FACTS TO THE
SEQUENCE SAMPLES WITHOUT THE
SUPER IMPOSITION WHERE
ANALYTICAL OR IMPLEMENTATION
BECOMES AVAILABLE IN A DATA
CENTER LIKE GEN BANK.
SRA PROCESSING INVOLVES
CONVERTING THESE DATA INTO
STABBED ARDIZEED HARMONIZED,
INTEROPERABLE FORMATS AND
DISTRIBUTING IT TO 2 CLOUD
PROVIDERS AND TO THE NLM DATA
CENTER.
AS YOU CAN SEE ON THIS SLIDE
HERE, DID THEA GROWTH IN SRA HAS
TRULY BEEN RELENTLESS.
AND AS AN INITIAL STEP TOWARDS
SOLVING THESE PROBLEMS, NLM
REPLICATED THE ENTIRE SRA CORPUS
ON TO THE AMAZON WEB SERVICE AND
GOOGLE CLOUD FORM PLATFORM
PROVIDER AS THE NIH STRIDE
INITIATIVE SEVERAL YEARS AGO AND
COMPLETED THE TRANSFER IN 2022,
AND WHILE THIS MADE THE DATA
MORE ACCESSIBLE TO USERS IT DOES
NOT CHANGE THE FACT THAT THE
UNDERLYING SRA ARCHITECTURE IS
AGING AND BECOME INCREASINGLY
FRAGILE UNDER THE WEIGHT OF THIS
DATA GROWTH.
AND SO NLM RECOGNIZED THAT IN
ORDER TO ACHIEVE THE GOAL OF A
SUSTAINABLE RESOURCE, THAT IS
REALLY ALIGNED WITH THE NEEDS OF
THE SCIENTIFIC COMMUNITY, IT'S
NOT JUST ENOUGH TO ADD CAPACITY,
IT REQUIRES REIMAGINING THE SRA
DATA MODEL AS WELL AS
MODERNIZING THE ARCHITECTURE.
THE SRA'S RA'S STRATEGIC MONITY
EFFORT IS TO LOOK AT
SUSTAINABILITY, LAUNCHED IN
2024, IT'S A 4 YEAR EFFORT TO
CONSTRUCT A INTENTIONAL,
COMPUTATIONALLY SUFFICIENT DATA
RESOURCE THAT WILL CONTAIN AND
MEET THE NEEDS OF THE NIH
COMMUNITIES.
AND THERE ARE 3-POINTS ESSENTIAL
TO SUCCESS.
THE FIRST IS TO ENGAGE WITH
STAKEHOLDERS AND USERS IN
REIMAGINING THE SRA DATA MODEL.
THE SRA SUSTAINABILITY WORKING
GROUP IS A KEY ELEMENT OF THIS
COMPONENT AND I'LL TALK MORE
ABOUT WHAT IS MEANT BY THE SRA
DATA MODEL SHORTLY.
THE SECOND COMPONENT IS TO
MODERNIZE SRA ARCHITECTURE.
THIS EFFORT WHICH IS INFORMED BY
THE DATA MODEL CHANGES WILL
DEFINE TECHNOLOGY REQUIREMENTS
FOR SUSTAINABILITY OPERATIONS
INCLUDING DATA PROCESSING
THROUGH PUT, QUALITY AND
AVAILABILITY.
AND IT REALLY EMPHASIZES
AUTOMATION AND TECHNICAL
SOLUTIONS THAT WILL BE RIGHT
SIZED FOR THE SRA WORKFORCE.
AND THE THIRD ELEMENT OF THE
TRANSFORMATION PROJECT IS THE
ESTABLISHMENT OF AN INTEGRATED
CLOUD ENVIRONMENT FOR DATA
PROCESSING MANAGEMENT AND
DELIVERY.
THIS INCLUDES DATA MANAGEMENT
PRACTICES AND A TECHNOLOGY
FRAMEWORK TO SUPPORT ENHANCED
DAILY BASIS THEA ACCESS
MANAGEMENT AND AS WELL AS
CYBERSECURITY CONTROLS.
BUT I WANT TO SAY A FEW WORDS
ABOUT THIS PROJECT AS WELL AS
THE NLM STRATEGIC PLAN BECAUSE I
THINK IT'S INCREDIBLY ALIGNED TO
THE GOAL OF THE NLM'S STRATEGIC
PLAN.
AS PART OF THIS EFFORT, NLM WILL
CREATE A SUSTAINABILITY
INSTITUTIONAL PHYSICAL AND
COMPUTATIONAL INFRASTRUCTURE
WHICH IS REALLY SUBGOAL 1.1 OF
THE LARGER GOAL TO ACCELERATE
DISCOVERY AND ADVANCE HEALTH
THROUGH DATA DRIVEN RESEARCH.
WE'RE ALSO REALLY EMBODYING GOAL
2, TO REACH MORE PEOPLE IN MORE
WAYS THROUGH ENHANCED
DISSEMINATION AND ENGAGEMENT
THROUGH SUBGOAL 2.1, AND TO NLM
USERS AND ENGAGE WITH
PERSISTENCE AS WELL AS SUBGOAL
2.4 TO ENHANCE INFORMATION
DELIVERY.
I WANT TO RETURN NOW TO THE
FIRST COMPONENT OF THE SRA
STRATEGIC TRANSFORMATION EFFORT
WHICH IS REIMAGINING THE SRA
DATA MODEL.
WHEN WE TALK ABOUT THE DATA
MODEL, WE'RE REFERRING PRIMARILY
TO 3 DATA RELATED CONCEPTS,
NAMELY, WHAT DATA IS STORED, HOW
THE DATA IS ORGANIZED AND
THIRDLY HOW THE DAILY BASIS THEA
IS ACCESSED.
AS SRA REIMAGINES THE DATA
MODEL, WE'RE LOOKING AT THE DATA
TYPE AND DATA FORMAT THAT ARE
PROVIDED BY SUBMITTERS FOR
INGEST BY SRA AND ASKING
QUESTIONS ABOUT THEIR POTENTIAL
FOR REUSE.
WE FEEL STRONGLY THAT A KEY ROLE
OF THE SRA IS TO AMPLIFY THE
RETURN ON U.S. TAXPAYER FUNDED
WERE INVESTMENTS BY ENABLING
REUSE OF THIS DATA AND FUELING
NEW DISCOVERIES, THEREFORE IT'S
REALLY IMPORTANT TO TRAIN A
CRITICAL EYE ON THE INGESTED
DATA AND CONSIDER HOW SRA, CAN
INCREASE THELY HOOD THAT THE
KONTY TECH NEBT HOLD WILL BE
VALUABLE FOR REUSE.
IN THE SAME WAY WE'RE ALSO
CONSIDERING THE FORMATS OF THE
DATA THAT S RA AVAILABLE MAKES
AVAILABLE TO USERS SO THAT WE
OFFER FORMATS THAT ARE NOT JUST
INTEROPERABLE BUT EASY TO USE.
FINALLY, REEVALUATION OF THE
DATA MODEL MUST ALSO CONSIDER
DATA ACCESS, THE NIH DATA
ECOSYSTEM IS GROWING, AND THE
DATA ECOSYSTEM ALSO EXTENDS
BEYOND NIH, AND SO A MODEL THAT
IMPROVES FEDERATED DATA SEARCH
ACCESS AND INTERROPERABILITY
ACROSS CURRENTLY ISOLATED
RESOURCES AND COMMUNITIES IS
ALSO ESSENTIAL TO SUSTAINING THE
VALUE OF S RA AS A RESOURCE.
SO IT'S REALLY IMPORTANT TO
ACKNOWLEDGE THAT MAKING
DECISIONANY OF THESE ELEMENTS OF
THE DATA MODEL WILL IMPACT S RA
STAKEHOLDERS, WHAT THEY CAN
SUBMIT, WHAT IS MADE AVAILABLE
FOR THEIR REUSE AND HOW THEY
ACCESS IT.
AND SO THAT POINT REALLY
PROVIDES THE PERFECT SEGUE TO
TALK A LITTLE BIT ABOUT THE NLM
BOARD OF REGENTS SRA
SUSTAINABILITY WORKING GROUP.
THIS GROUP IS CHARGED WITH
INFORMING THE EFFICIENT AND
EFFECTIVE STEWARDSHIP OF SRA,
BUT SRA IS REALLY ABLE TO
ADVANCE SCIENCE IN WAYS
ACCOUNTABLE TO ITS STAKEHOLDERS,
THE STEWARDSHIP AND TAKE HOLDER
ACCOUNTABILITY REVOLVE AROUND 3
CORE ELEMENTS OF S RA.
FIRST THE FISCAL SUSTAINABILITY
OF THE RESOURCE WHICH I WILL
COME BACK TO SHORTLY.
SECOND IT'S THE SUITABILITY OF
THE RESOURCE TO SERVE THE NEEDS
OF THE BIOMEDICAL COMMUNITY AND
THIRDLY, IT'S ABOUT ALIGNMENT OF
SRA WITH THE FAIR DATA
PRINCIPLES, FINDABILITY,
ACCESSIBILITY, INTERROPERABILITY
AND REUSABILITY.
REIMAGINING THE SRA DATA MODEL
INTERSECTS ALL 3 OF THESE
ELMETROPOLITANS AND SO I HOPE
YOU CAN SEE HOW THE WORKING
GROUP IS GOING TO PLAY A VERY
IMPORTANT ROLE IN THIS EFFORT
AND THEREFORE IN THE ACTUAL
SUCCESS OF THE STRATEGIC
TRANSFORMATION EFFORT.
THIS NEW WORKING GROUP REPORTS
TO THE NLM BOARD OF REGENTS AND
THE BOARD OF RENALLENTS IS A
IMPORTANT CONTRIBUTOR TO THE
WORKING GROUP.
THE BOARD OF REGENTS WILL BE
PROVIDING FEEDBACK TO NLM ON 2
THINGS, FIRST THE CONSISTENCY OF
THE RECOMMENDATION WITH THE NLM
MISSION, AND SECONDLY, WITH THE
ALIGNMENT OF THE RECOMMENDATIONS
TO THE NLM STRATEGIC PLAN.
AND SO IF THIS IS THE SRA
SUSTAINABILITY WORKING GROUP, I
WANT TO SPEND A FEW MINUTES
TALKING ABOUT SUSTAINABILITY AND
THE CONTEXT OF THE SRA.
THE SRA MAY BE CONSIDERED A NIH
STRATEGIC BIOLOGICAL ASSET, OR
SBA, AND THIS ABILITY IS
PARAMOUNT AND INTEGRAL TO BEING
SUCH ASAZ SET.
IN FISCAL YEAR 23, NIH SBA
WORKING GROUP PROSCRIEDED A
REPORT THAT DESCRIBED 8
COMPONENTS FOR SBA
SUSTAINABILITY PLANS AND THOSE
COMOPPOSITE BEHAVIORIAL
PHENOTYPENTS ARE SHOWN ON THIS
SLIDE HERE.
THEY'RE HAVING A BUSINESS
FRAMEWORK, CELLULAR, METRIC,
PRIMARY COST DRIVERS, OVERSIGHT
STRUCTURE, INFRASTRUCTURE OF THE
RESOURCE, DATA MANAGEMENT AND
DATA STANDARDS, MECHANISM FOR
HANDLING SECURITY AND PRIVACY
AND ALSO PROVIDING OVERSIGHT FOR
SUSTAINABILITY PLANNING
SPECIFICALLY.
OVER THE NEXT COUPLE OF SLIDES
WE WILL LOOK AT A COUPLE OF
THESE COMPONENTS AS WELL AS
RECOMMENDATIONS FROM A PRIOR
WORKING GROUP AND ALSO AT
CURRENT SRA ACTIVITIES AND PLANS
TO ACHIEVE SUSTAINABILITY.
THERE'S REALLY 2 KEY ELEMENTS OF
SRA SUSTAINABILITY THAT I WANT
TO TOUCH ON TODAY AND THAT'S
COST AND VALUE.
COST REFERS BOTH TO THE COST OF
OPERATIONS AS WELL AS THE COST
OF SHORT AND LONG-TERM DATA
STORAGE.
THE GRAF ON THE RIGHT HAND SIDE
OF THIS SLIDE SHOWS HOW THE DATA
MODEL FOR STORAGE COST SHOWN IN
GRAY RAISED SIGNIFICANT CONCERNS
ABOUT SRA FISCAL SUSTAINABILITY
IN THE FACE OF DATA GROWTH.
COSTS WOULD HAVE TRIPLED OVER
THE NEXT FEW YEARS WHICH IS
REALLY NOT A SUSTAINABLE
SITUATION.
SO IN FISCAL YEAR 24 AND 25, THE
SRA TEAM EXPLORED HOW CHANGES TO
THE STORAGE MODEL COULD IMPROVE
FISCAL SUSTAINABILITY, AND IF
YOU WILL SEE IN LATER
GERONTOLOGYSTS TAIL ON AALATE
IRB SLIDE, THEY AAPPROACHES THAT
STUDY COST IN THE FACE OF DATA
GROWTH WHICH IS NOW THE BLUE
LINE HERE IN THE CURRENT MODEL
HERE.
VALUE IN THE CONTENT OF
SUSTAINABILITY REFERS TO THE
NEED FOR AN SRA DATA MODEL THAT
CONSIDERS THE LONG-TERM
FINDABILITY AND USABILITY OF THE
CONTENT.
THE DATA SYSTEM IN WHICH SRA
EXISTS IS CONSTANTLY EVOLVING
WITH CHANGES TO THE DATA TYPES
AND THE FORMATS, AND SO SRA
SUSTAINABILITY REQUIRES A MODEL
THAT CONSIDERS HOW THE VALUE OF
THE CORPUS CAN BE MAINTAINED
OVER TIME AND BE OF USE TO THE
ECOSYSTEM.
SOME INITIAL GUIDANCE FOR SRA
SUSTAINABILITY CAME FROM AN NIH
COUNCIL OF COUNCILS WORKING
GROUP FORMED IN 2019 TO PROVIDE
GUIDANCE FOR MANAGING THE
ARCHIVE IN CLOUD SERVICE
PROVIDER ENVIRONMENTS AS SRA WAS
UNDERTAKING THE MAJOR INITIATIVE
TO THE CLOUD BEGINNING BACK THEN
AND THIS GUIDANCE HAS REALLY
INFORMED I THINK THE CURRENT SRA
TRANSFORMATION EFFORT SERVING AS
A SET OF GUARD RAILS FOR
SUSTAINABILITY ASSOCIATED
DECISIONS THAT ARE NOW BEING
EXPLORED AND WILL BE MADE.
IF WORKING GROUP RECOMMENDED
THAT SRA PROVIDE DATA IN
STANDARDIZED FORMATS THAT MATCH
USE CASES, THAT THEY ALIGN THEIR
DATA STORAGE COST WITH USAGE
RATES AND THIRDLY THEY ALLOW
DATA TO REMAIN ACCESSIBLE AND
FREELYY AVAILABLE TO USERS.
SO THAT'S REALLY AN IMPORTANT,
LIKE I SAID A SET OF GUARD RAILS
AND CONTEXT FOR THINKING ABOUT
HOW THE SRA TRANSFORMATION MAY
BE TAKING PLACE.
NOTICE A KEY ELEMENT OF SRA
SUSTAINABILITY WILL BE THE
ABILITY TO SERVE EMERGENT AND
FUTURE USE CASES AND AS NOTED ON
THIS SLIDE SRA HAS TO SERVE THE
NEED OF THE BIOMEDICAL COMMUNITY
HOWEVER THOSE NEEDS ARE ALSO
EVOLVING SO SRA MUST ADAPT TO
CHANGING DATA SUBMISSION AND
USAGE TRENDS AND NEEDS TO ENABLE
LARGE SCALE DATA COMSUMPTION AND
ALSO TO SUPPORT AI BASED
APPROACHES TO INVESTIGATION.
SRA'S USED A CLOUD FORM
TRANSFORMATION IN THE CLOUD
INITIATIVE DOES JUST THAT, IT
PROVIDES USERS WITH UNFETTERED
ACCESS TO SRA DATA AND SUPPORTS
APPLICATIONS PLIPICATION OF NEW
TECHNOLOGIES LIKE AI AND
FACILITATES DATA COMPUTE AND
TRANSFORMATION AT KALE AND WILL
ULTIMATELY ACCELERATE THE RATE
AND BREDTH OF SCIENTIFIC DORPHY.
ANOTHER KEY ELEMENT OF SRA
SUSTAINABILITY WILL BE ITS
AVAILABILITY TO INVOLVE INGEST
SUPPORT FOR DATA SUBMISSIONS AND
AS NOTED ON THIS SLIDE HERE, SRA
DATA IS DIVERSE.
SUBMISSIONS COMPRISE MANY DATA
TYPES, FILE FORMATS AND DATA
STANDARD, AND THE GRAPH FROM THE
RIGHT HERE ILLUSTRATES HOW THESE
CAN CHANGE WITH TIME.
YOU CAN SEE HOW SUBMISSIONS OF
METAGENOMES ARE REALLY
INCREASING AND WE HAVE WAY MORE
OF THESE THAN WE DID A DECADE
AGO, MONITORING FOR TRENDS LIKE
THIS IS CRITICAL TO MAKING
INFORMED CHANGES TO THE DATA
MODEL SO THAT SRA SUSTAINS ITS
DELIVERY OF VALUE TO USERS.
I WILL ALSO NOTE THAT DATA
MODELS TO INSURE SUSTAINABILITY
INSURE DATA FORMAT, SOMETHING I
MENTIONED EARLIER.
THE FIGURE HERE ON THE RIGHT
HAND SIDE OF THE SLIDE
ILLUSTRATES HOW SRA USES
DIFFERENT FORMATS TO DIFFERENT
TYPES OF USE CASES.
AS YOU SEE WITH THE BLUE ARROW
HERE, DIFFERENT STORAGE FORMATS
OCCUPY DIFFERENT STORAGE
FOOTPRINTS.
SOME FORMATS WHICH S RA
GENERATES AS PART OF SRA
PROCESSING COSTS LESS TO STORE
AND USE AND FORMATS IN WHICH THE
SUBMISSIONS ARE MADE BUT ARE
ALSO LESS COMMONLY REUSED.
FOR EXAMPLE, SRA HAS DEVELOPED
SRA LIGHT, WHICH CERTAINTIES
TYPICAL COMPUTATIONS WITH COMMON
TOOLS AND REDUCES THE FILE SIZE
BY 44% ON AVERAGE OVERORIGINAL
SUBMISSION FORMATS LIKE BAM OR
PEW, THAT ARE EMERGING WITH THE
RAW DATA.
EMERGING WITH THE COMMUNITY OF
DERIVED FORMATS THAT MEET THE
ANALYSIS NEEDS WILL BE REALLY
CRITICAL TO SRA'S
SUSTAINABILITY.
HAVING DIFFERENT STORAGE FORMATS
ALSO OFFERS US OPPORTUNITIES TO
DEVELOP A SUSTAINABLE DATA
STORAGE MODEL.
THE TABLEOT RIGHT HERE PROVIDES
AN OVERVIEW OF THE CURRENT S RA
DATA STORAGE MODEL WHICH I
MENTIONED EARLIER IS DOING JUST
THAT.
THIS HYBRID MODEL INTEGRATES
SEVERAL STORAGE CLASSES IN AWS
AND IN GCP AS WELL AS ON
PREMISES STORAGE TO PROVIDE USER
ACCESS TO THE FILE FORMAT
NECESSARY TO SUPPORT THEIR USE
CASES, IN SUFFICIENT STRUCTURES
THAT MATCH STORAGE COST WITH
USAGE LEVEL.
THE SRA STORAGE ARCHITECTURE
IMPOSSIBLE TO BUILD GREATS SRA
SEQUENCE DATA AS WELL AS
ASSOCIATED DESCRIPTIVE METADAT
A. SRA IS CONSIDERING BOTH THE
FOOTPRINT OF THE DATA FORM AT AS
WELL AS NEED FOR ACCESS IN
IDENTIFYING THE APPROPRIATE
STORAGE LOCATION WITH DIFFERENT
LOCATIONS AND TEARS OF DIFFERENT
COSTS ASSOCIATE WIDE STORAGE AND
ACCESS.
FOR EXAMPLE, FILES IN THE SRA
NORMALIZED FORMAT WHICH IS
SUITABLE FOR MOST BIOINFORMATIC
USE CASES ARE AVAILABLE FOR FREE
THROUGH THE AMAZON OPEN DATA
PROGRAM, WHILE SOURCE FILES,
WHICH ARE LARGER, EXCUSE ME AND
WHOSE USE IS OBLIGATE ONLY FOR
CERTAIN TYPES OF DAT ANALYSIS
ARE STORED IN THE DATA ARCHIVE
FOR WHICH NCI'S COST OF
RETRIEVAL IS GREATER BUT OCCURS
LESS FREQUENTLY.
AND DESPITE BEING THE WORLD'S
LARGEST REPOSITORY OF SEQUENCE
DATA IT'S ALSO IMPORTANT TO
RECOGNIZE THAT SRA IS ALSO A
SINGLE COMPONENT IN A LARGER
DATA ECOSYSTEM AS I MENTIONED
EARLIER.
MANY OF THE COMPONENTS OF WHICH
ARE FUNDED BY NIH.
THIS ECOSYSTEM ALSO PRESENTS
OPPORTUNITIES TO ENHANCE THE
SUSTAINABILITY OF SRA.
THROUGH ELEMENTS SUCH AS
DISTRIBUTED INFORMATION
HOLDINGS, NEW SEARCH AND
RETRIEVAL MECHANISMS, AND NEW
DATA INTEGRATION TOOLS, USERS
SHOULD BE ABLE TO REAP ALL THE
SAME BENEFITS OF A GROWING DATA
CORPUS WITHOUT SRA HAVING TO
BEAR THE BURDEN OF HOLDING IT
ALL.
SRA'S STRATEGIC TRANSFORMATION
EFFORT TAKESSA A CLOUD CENTRIC
APPROACH WHICH IS ESSENTIAL TO
DATA FEDERATION AS CLOUD
PROVIDES A PLATFORM TO CONNECT
SRA TO DATA AND NIH RESOURCES.
TODAY NLM IS BUILDING A FULLY
CLOUD ENVIRONMENT WHICH SUPPORTS
DATA MONITORING, CYBERSECURITY
CONTROL, ENGAGING STAKEHOLDERS
WILL INFORM THE EFFORTS TO
ESTABLISH INTEROPERABILITY
THROUGH THE COMPONENTS I'M
LISTING ON THE SLIDE HERE.
SO IN THE LAST PART OF MY TALK,
I WOULD LIKE TO SAY A FEW WORDS
ABOUT THE SRA SUSTAINABILITY
WORKING GROUP.
THEY'RE CHARGED IN THE EXPELTER
EEDZ WE BELIEVE IT WILL BRING AS
WELL AS HOW IT'S GOING TO WORK.
THIS SLIDE DOCUMENTS THE
SPECIFIC ELEMENTS OF THE CHARGE
FOR THE SRA SUSTAINABILITY
WORKING GROUP, THEY ARE TO
SUSTAIN SRAs AS STRATEGIC
ASSET TO THE SCIENTIFIC
COMMUNITY, INCLUDING DATA
APPROXIMATE CENTERS AND USERS,
ALSO TO DEVELOP ENGAGEMENT
STRATEGIES THAT INSURE THE
EVOLVING NEEDS OF STACK HOLDERS
ARE UNDERSTOOD AND CONSIDERED
DURING SRA MODERNIZATION.
IMPORTANTLY, THE WORKING GROUP
WILL HELP OBTAIN RECOMMENDATIONS
FOR ENGAGING STAKEHOLDER
COMMUNITIES AND BUILDING
CONSENSUS IN THE CONTEXT OF SRA
PROGRAM CHANGES.
AS I MENTIONED AS THE DATA MODEL
CHANGES, IT WILL BE IMPORTANT TO
BUILD THAT CONSENSUS IN THE
COMMUNITY.
THE WORKING GROUP WERE ALSO
LIAISON ASSED WITH THE NIH
STRATEGIC BIOMEDICAL ASSET
STRATEGIC WORKING GROUP FOR
ACCOUNTABILITY TO THE PROCESS
INCLUDING APPROPRIATE MODELS FOR
THE SRA.
SO THOSE INTERACTIONS WILL BE
FINALIZE AS IT MATURES.
SO AGAIN I WANT TO COME BACK AND
SAY A FEW WORDS ABOUT THE THIRD
ELEMENT OF THIS CHARGE.
SRA IS REALLY COMMITTED TO
MAKING SURE THAT DATA THAT IS
COMING IN AND REUSABLE IN THE
WAY THAT THE SCIENTIFIC
COMMUNITY EXPECTS.
AND AS THE SRA WORKS TO ACHIEVE
THIS GOAL IT MAY NEED TO GO
THROUGH PERIODS WHERE IT LIMITS
THE OPTION TO USERS AS IT
CREATES A MORE STANDARD WORK
FLOW WHICH IN THE END WILL
BENEFIT USERS BECAUSE OF FASTER
PROCESSING, BETTER DATA AND MORE
REUSABLE DATA.
THE BOARD OF REGENTS WORKING
GROUP WITH ITS KNOWLEDGE AND
CONSIDERATIONS OF THE INTERNAL
SUSTAINABILITY ISSUES FOR SRA
CAN HELP COMMUNICATE THESE TO
THE OUTSIDE COMMUNITIES AS SRA
GOES THROUGH THIS TRANSFORMATION
PERIOD.
SO SRAs IN THE PROCESS OF
IMPANELING THE WORKING GROUP, TO
HELP THE WORKING GROUP HAVE THE
BEST OPPORTUNITY OF FULFILLING
ITS CHARGE, IT'S IDENTIFIED 7
KEY SCENES FOR WHICH IT'S GOING
TO BE REALLY IMPORTANT TO HAVE
EXPERT EEDZ REPRESENTATIVE IN
THE GROUP.
THESE THEMES ARE LISTED HERE,
THEY INCLUDE LARGE SCALE GENOMIC
SEQUENCE DATA ANALYSIS, DATA
SCIENCE TOOLS, CLOUD DATA
PLATFORMS AND ANALYSIS, HUMAN
GETTICS AND GENOMICS,
MICROBIOMES, METAGENOMICS AND
BIOMICROBIAL DISCOVERY, PUBLIC
HEALTH, EPIDEMIOLOGY, PATHOGEN
SURVEILLANCE, DATA MANAGEMENT,
REPOSITORIES AND FAIR DATA
PRACTICES AND FINALLY EDUCATION,
OUTREACH AND EVANGELISM.
THESE THEMES REPRESENT THE
HIGHEST VALUE AND MOST COMMON
USE CASES FOR THE SRA SO BY
BRINGING AN EXPERTISE IN THESE
AREAS, THE WORKING GROUP CAN
PROVIDE NLM AND THE BOARD OF
REGENTS WITH WERE
RECOMMENDATIONS ARE EPI-BLAST
RESENTATIVE OF STAKEHOLDER VIEWS
IN THESE AREAS.
ON THIS SLIDE WE CAN SEE A BRIEF
OVERVIEW OF THE WORKING GROUP
MEMBERSHIP AND THE ANTICIPATED
CADENCE OF MEETINGS, THERE'S
ANYTHING TO BE 2 CO CHAIRS FOR
THE WORKING GROUP, 1 OF WHO IS
AN NLM BOARD OF REEJENTS, AND
MANY THANKS TO DR. NEAL AS 1 OF
THE CO-CHAIRS DR. BRIT ME ASTER
AND AS THE LEAD HEAD AND THE
LEAD FOR THE PROJECT WILL SERVE
AS THE EXECUTIVE SECRETARY FOR
THE WORKING GROUP AND I EXPECT
YOU WILL HEAR FROM HIM IN MANY
OF THE UPCOMING BOARD OF REGENT
MEETING THAT THE WORKING GROUP
REPORTS BACK.
THERE WILL BE 9 ADDITIONAL
MEMBERS OF THE WORKING GROUP.
ANOTHER BOARD MEMBER HAS AGREED
TO FILL 1 OF THESE POSITIONS AND
WE THANK HER FOR DOING SO.
THIS WORKING GROUP IS GOING TO
BE EMPANELLED FOR 3 YEARS AND AT
THE END OF THIS TERM, THE
PROGRESS AS A SRA STRATEGIC
TRANSFORMATION PROGECLET BEING
EVALUATE AND IF IT'S NECESSARY,
A NEW WORKING GROUP WILL BE
ESTABLISHED SO WE CAN CONTINUE
GETTING THE IMPORTANT FEEDBACK
THAT'S NEEDED TO STAKEHOLDERS TO
NLM.
THE WORKING GROUP WILL BE
MEETING UP TO 4 TYPES A YEAR,
SOMETIMES IN CONJUNCTION WITH
THESE NLM BOARD OF REGENTS MEET
XG IT'S GOING TO BE REPORTING AS
PROGRESS AND ACTIVITIES
REGULARLY TO THE FULL BOARD OF
REGENTS IN OPEN SESSION.
THE WORKING GROUP IS EXPECTED TO
PRODUCE 2 TYPES OF DELIVERABLES,
FIRST IT'S GOING TO PROVIDE THE
NLM BOARD OF REGENTS WITH
AN ANNUAL WRITTEN REPORT OF ITS
FINDINGS AND SECONDLY AT THE
CONCLUSION THEY WILL PROVIDE THE
BOARD OF REGENTS WITH A WRITTEN
SUMMARY OF ITS FINDINGS.
SO I WILL END WITH A FEW WORDS
ABOUT THE TIMELINE FOR THE
WORKING GROUP.
AS YOU CAN SEE HERE WE'RE
CURRENTLY COMPLETING THE
EMPANELLING OF WORKING GROUP
MEMBERS AND WE EXPECT THIS TO BE
COMPLETE OVER THE NEXT FEW
WEEKS.
WE AIM TO HOLD THE FIRST WORKING
GROUP MEETING DURING Q4, FISCAL
YEAR 25, SO THAT THE FIRST
REPORT OUT TO THE BOARD OF
REGENTS CAN BE MADE DURING THE
NEXT FULL MEETING LATER THIS
YEAR IN THE FALL.
WITH THAT I WILL WRAP THINGS UP,
TODAY I GAVE YOU AN OVERVIEW OF
THE SRA, AND THE ONGOING
STRATEGIC INFORMATION EFFORT,
SHARED SOME OF THE KEY ISSUES
ASSOCIATE WIDE SRA
SUSTAINABILITY AND INTRODUCE YOU
TO THE WORKING GROUP THAT IS
CHARGED WITH HELPING SRA MAKE
DECISIONS TO ASSURE THAT IT
SIGNIFICANTLY ADVANCES SCIENCE
IN WAYS THAT ARE ACCOUNTABLE TO
ITS STAKEHOLDERS INCLUDING
REMAIN AG SUSTAINABILITY SUSTA.
I AND WANT TO SAY THANK TO YOU
MANY MEMBERS OF THE SRA WHO ARE
CARRYING OUT THE STRATEGIC
TRANSFORMATION, AND SO WITH THEY
WILL PAUSE BECAUSE I KNOW WE
HAVE A DISCUSSION SCHEDULED
AFTER THAT.
>> THANK YOU DOCTOR FOR THE
SEQUENCE AND READ OUT ARCHIVE
WORKING GROUP.
DR. NEILSEN AND KWITEK ARE YOU
READY TO LEAD THE DISCUSSION?
>> YES, ABSOLUTELY, I WOULD LIKE
TO THANK DR. SCHNEIDER FOR THE
PRESENTATION.
OBVIOUSLY THIS IS REALLY
IMPORTANT FOR THE BIOMEDICAL
ECOSYSTEM AND MAINTAINING IT IN
THE LONG RUN IS I THINK WOULD BE
A VERY, VERY HIGH PRIORITY AND
REALLY LOOKING FORWARD TO
ENGAGING IN THE WORK OVER THE
NEXT COUPLE OF YEARS IN THE
WORKING GROUP, I THINK 1 OF THE
THINGS WE HAVE TO REALLY LOOK AT
IS ARE THERE NEW SOLUTIONS WE
HAVEN'T THOUGHT ABOUT THAT MIGHT
BE MORE SUITABLE IN THE LONG RUN
AND AS PART OF THAT, WHAT
COMPROMISE WE MIGHT HAVE TO MAKE
IN SPEED OF ACCESS TO THE DATA,
HOW FAST CAN YOU SEARCH THE
DATABASE, RELATIVE TO COST OF
MAINTAINING THE DATABASE?
SOMETHING THAT LOTS OF
INTERESTING PROBLEMS THAT WE
WILL FACE AND I'M REALLY LOOKING
FORWARD TO WORKING WITH THE
WORKING GROUP OVER THE NEXT
YEARS.
>> GREAT, THANK YOU.
>> YEAH, WE ARE EXCITED NOT TO
JUST BE THINKING ABOUT THE DATA
FORMATS WE SEE BUT ABOUT THE NEW
APPROACHES THAT CAN BE MADE TO
CREATING AS YOU SAID DIFFERENT
TYPES OF STORAGE MECHANISMS THAT
MAY INTURN NOT JUST DO THINGS
LIKE REDUCE FOOTPRINT BUT MAY
MAKE THE DATA ACCESSIBLE TO
DIFFERENT METHOD,
BIO-INFORMATICS METHODS TO WORK
WITH IT INCLUDING AI.
>> SO THANK YOU DR. SCHNEIDER, I
WANT TO ECHO WHAT DR. NEILSEN
SAID, THIS IS A CRITICAL PIECE
OF INFORMATION THAT IS USED BY
SO MANY PEOPLE.
ONE OF THE QUESTIONS I HAD WAS,
I SEE IT'S SO IMPORTANT TO HAVE
THIS REUSABLE AND FOLLOW FAIR
PRINCIPLES, IS PART OF THE
WORKING GROUP'S CHARGE TO MAKE
THE METADATA ASSOCIATED WITH
THIS INFORMATION REALLY
RIGOROUSLY STANDARDIZED?
>> I THINK THAT IS A GREAT
QUESTION, YOU KNOW THE METADATA
IS TODAY 1 OF THE BIGGEST
CHALLENGES THAT I THINK ANY
LARGE DATA RESOURCE FACES, YOU
KNOW ESPECIALLY 1 THAT HAS GROWN
OVER TIME AND HAS SEEN YOU KNOW
SUBMISSIONS IN AN ERA WHEN THE
VALUE OF METADATA WAS LESS WELL
UNDERSTOOD THAN IT IS TODAY AND
I THINK THAT THE WORKING GROUP
AS PART OF THIS EFFORT IS REALLY
GOING TO BE TAKING A LOOK AT THE
VARIOUS FORMATS THROUGH WHICH
THE DATA IS BEING SUBMITTED
THROUGH WHICH THEY'RE INGESTING
IT AND BEING ABLE TO MAKE
RECOMMENDATIONS TO THE COMMUNITY
ABOUT AGAIN, THE TYPES OF
FORMATS, AND THE ASSOCIATED
METADATA, THAT WILL MAKE IT MOST
REUSABLE, BECAUSE AGAIN, THE
GOAL HERE IS TO INSURE THE
REUSABILITY OF THE DATA AND THAT
WILL CLEARLY BE A CHALLENGE FOR
THE COMMUNITY TO HAVE TO ACCEPT
CHANGE ANDS THAT'S WHY I THINK
THE ROLE OF THE WORKING GROUP IS
SO CRITICAL TO HELPING THE SRA
CONNECT WITH THE COMMUNITY AS
WELL AND YOU KNOW INFORM THEM OF
THE IMPORTANCE OF ELEMENTS LIKE
SOLID METADATA.
>> THANK YOU.
I HAD 1 MORE QUESTION, YOU KNOW
SUSTAINABILITY IS 1 OF THESE
REALLY BIG ISSUES RIGHT, THIS IS
A MASSIVE DATA SET AND NLM IS
SUPPORTING THIS BUT YET THIS IS
USED BY THE ENTIRE RESEARCH AND
BIOMEDICAL COMMUNITY.
IS THERE ANY -- AND OF COURSE
THE USE OF IT, BEING ABLE TO USE
IT IS REALLY IMPORTANT FOR
EVERYBODY TO ACCESS SO HOW DO
YOU FORSEE BALANCING, AND I'M
ASSUMING YOU CAN'T HAVE USER
FEES, MAYBE, OR SUBMISSION FEES
OR ANYTHING LIKE THIS TO BE ABLE
TO HELP WITH THE SUSTAINABILITY
OF SUCH A RESOURCE.
>> SO I THINK THERE'S A FEW
ELEMENTS THAT REALLY SPEAK TO
THIS SUSTAINABILITY, AS I SAID,
YOU KNOW SOME OF THIS WILL COME
DOWN TO THE STORAGE MODEL AND
THE FILE FORMATS WHICH HELP
DRIVE DOWN COSTS THERE BUT I
THINK THE OTHER PART OF THIS IS
REALLY THINKING ABOUT THE
POSITION OF THE SRA AND THE
LARGER DATA ECOSYSTEM, AS I
SAID, YOU KNOW, SRA DATA
SUBMISSIONS WE HAVE TO
ANTICIPATE WILL CONTINUE TO
GROW, ABOUT YOU I THINK NIH AS
WELL AS OTHER FUNDING AGENCIES
OUT THERE, ARE ALSO, YOU KNOW
CONSIDERING OTHER REPOSITORIES
AS WELL, AND SO I THINK CREATING
AND WORKING IN A FEDERATED
ENVIRONMENT IS AN IMPORTANT
ELEMENT TO MANAGING THAT
SUSTAINABILITY BECAUSE AS WE
THINK ABOUT FEDERATION, WE CAN
START LOOKING AT NOT JUST WHO
STORES WHAT, WHAT COPIES NEED TO
BE AVAILABLE, WHAT FORMAT IT IS
ARE HELD IN 1 REPOSITORY VERSUS
THE OTHER AND THAT DISTRIBUTION
PROVIDES AN OPPORTUNITY AGAIN TO
THINK ABOUT THIS LARGER QUESTION
OF LONG-TERM SUSTAINABILITY.
I MEAN, AGAIN, THE QUESTION OF
COST AND OTHER OTHERWISE, I WILL
SAY BASED ON THE GUIDANCE, YOU
KNOW THE COUNCIL OF COUNCILS
WORKING GROUP, YOU KNOW NIH HAS
INDICATED HISTORICALLY IT FEELS
IT'S IMPORTANT TO KEEP THIS A
FREE RESOURCE, BUT, YOU KNOW I
THINK WE ALL HAVE TO KEEP AN
OPEN MIND AND SEE WHERE ALL OF
THIS GOES, BUT YOU KNOW THAT IS
THE GUARD RAIL IN WHICH WE'RE
OPERATING RIGHT NOW.
>> THANK YOU..
>> WERE THERE OTHER QUESTIONS ?
I SEE CHRIS HAS SOME COMMENTS IN
THE CHAT, DO YOU HAVE A QUESTION
ABOUT THE SEQUENCE.
>> NO QUESTION, I'M JUST REALLY
GLAD THAT SEE THAT NLM MOVES
MORE STRONGLY IN THE DIRECTION
OF FEDERATED DAILY BASIS THEA
SYSTEMS AND ALSO HOPING THAT THE
PROCESS OF GETTING THE COMMUNITY
MORE INFORMED ABOUT IMPORTANCE
OF SUBMITTING COMPLETE AND
ANGERATE DATA IS ITERATED WITHIN
THE COMMUNITY AND DESIGNED IN A
WAY THAT SUPPORTS THEIR ACTUAL
USE CASES AND I'M LOOKING
FORWARD TO SEEING THE TASK FORCE
ADDRESS THAT CHALLENGE.
, YEAH, THANK YOU.
THAT'S GREAT TO HEAR.
YOU KNOW EVEN IN THESE INITIAL
FACES OF THE TRANSFORMATION
EFFORT, THE SRA TEAM HAS BEGUN
OUTREACH EFFORTS TO TALK ABOUT
THE DATA DELIVERY, THE FORMATS
WE PROVIDE BUT ALSO REALLY TO
START DIGGING INTO THE
SUBMISSION FORMATS THAT WE SEE
AND UNDERSTANDING SUCH QUESTIONS
AS WHAT ARE THE STRUCTURES, WHAT
ARE THE PROBLEMS WE FIND AND
INGESTING THAT DAT AQUALITY
METRIC NEED TO BE ASSOCIATED
WITH THEM, ALSO WHAT IS THE
RESUESABILITY OR CAPACITY FOR
REUSE OF THOSE FILES, AGAIN,
MAKING SURE THAT THE FOCUS IS ON
INGESTING CONTENT THAT IS REAL
USEABLE.
>> ARE THERE ANY OTHER
QUESTIONS?
>> YEAH.
I KNOW THE TERMS INTEGRATION AND
ECOSYSTEM WERE MENTIONED SEVERAL
TIMES, SO I'M CURIOUS IF YOU
ENVISION, OF COURSE THIS SOUNDS
PRETTY UPSTREAM BUT IF YOU ARE
ENVISIONING DEVELOPING NEW
EU-TILITIES, BUT I KNOW THERE
ARE SEVERAL OUT THERE, BUT IF
YOU ENVISION NEWER E-UTILITIES
THAT COME ABOUT THAT INTEGRATE
ACROSS MANY DATA RESOURCES OF
NIH OR NCBI, IS IT JUST SAYING
WE WILL FIND BETTER FILES OR
MORE EFFICIENT FILES THAT PEOPLE
CAN DOWNLOAD AND USE IF THEIR
OWN TOOLS NTHANK YOU FOR THE
QUESTION.
IT DOES GO BEYOND JUST HAVING,
YOU KNOW SPECIFIC FILE FORMATS
AND THERE ARE THE NEEDS FOR THAT
THOSE DATA INTEGRATION TOOLS AND
I WILL SAY 1 OF THE THINGS THAT
IS EXCITING ABOUT CREATING AN
SRA, OF THE FUTURE--POTENTIAL
THAT YOU ARE IS, WOOING ON A
CLOUD PLATFORM AND HAS THE
CAPABILITY FOR INTEROPERABILITY
IS OPPORTUNITIES TO INTERSECT
WITH NIH ADDITIONAL EFFORTS SUH
AS THE NIH CLOUD PLATFORM
INTEROPERABILITY, NCI, AND NIH
ROLL OFF MY TONGUE, BUT IT'S
LOOKINGA THE AN ABILITY TO HOW
WE MIGHT ENGAGE WITH AND TOOLS
AND DEVELOPMENT THAT ARE
HAPPENING IN AREAS SUCH AS THAT
TO NOT JUST THINK ABOUT FILE
FORMAT BUT REALLY, THE TOOLS AND
THE STRUCTURES THAT ARE NEEDED
FOR INTEGRATION.
>> THANK YOU AGAIN SO MUCH.
SO THE NEXT ITEM ON THE AGENDA
IS THE REPORT OF THE NOMINATING
COMMITTEE FOR THE BOARD OF
REGENTS CHAIR DR. MICHELLE
ELEKONICH, WE'RE RUNNING A
LITTLE AHEAD OF TIME.
>> THANK YOU.
DR. ZANG AND DR. KIRSCH AND I
COMPRISE THE COMMITTEE, WE
GATHERED ON THE 11th OF APRIL
AND DISCUSSED POSSIBLE
CANDIDATES TAKING INTO THE
ACCOUNT THE HISTORY OF THE
POSITION AND THE NEEDINGS
EXPRESSED BY NLM, AND WE WOULD
LIKE TO NOMINATE PHILLIP WALKER
AS THE NEXT CHAIR.
>> DO I ACCEPT HERE?
>> WONDERFUL.
>> THANK YOU DR. ELEKONICH, AND
SARAH AND THANKS FOR YOUR
NOMINATION FROM THE NOMINATION
COMMITTEE AS WELL.
I ACCEPT.
THANK YOU.
>> WONDER; WONDERFUL.
>> THE NEXT ITEM OF THE AGENDA
ASK IS THE NLMDIRECTOR'S AND
FRANK B. ROGERS AWARDS.
DR. SHERRY?
>> ALL RIGHT, I AM PLEASED TO
ANNOUNCE THE 2 RECIPIENTS OF THE
NLM DIRECTOR'S HONOR AWARD AND
THE FRANK B. ROGERS AWARD.
HERE WE GO.
THE FIRST AWARD PRECEPTED IS THE
NLM DIRECTOR'S HONOR AWARD, THIS
AWARD WAS ESTABLISH INDEED 1969
TO RECOGNIZE AND ACKNOWLEDGE THE
WORK OF NLM EMPLOYEES, THAT MADE
EXCEPTIONAL CONTRIBUTIONS TO THE
ACHIEVEMENTS OF THE LIBRARY.
NOMINEES MUST BE EMPLOYEES WITH
AT LEAST 2 YEARS OF SERVICE TO
NLM, MERIT SPECIAL RECOGNITION
BY THE DIRECTOR FOR OUTSTANDING
AND CLEARLY EXCEPTIONAL SERVICE
AND ADVANCES THE LIBRARY'S
MISSION.
THIS YEAR, WE ARE PLEASED TO
PRESENT THE NLM DIRECTOR'S HONOR
AWARD TO DR. ZOE ZANG.
DR. ZANG IS THE CHIEF OF THE
SCIENTIFIC REVIEW OFFICE IN THE
DIVISION OF THE EXTRAMURAL
PROGRAMS.
SHE IS BEING RECOGNIZED FOR HER
OUTSTANDING LEADERSHIP,
DEDICATION AND EXCEPTIONAL
SERVICE IN ADVANCING THE NLM'S
MISSION, EXCELLENCE AND
SCIENTIFIC PEER REVIEW.
OVER 2 DECADES DR. ZANG HAS
CONDUCTED 111 PEER REVIEW
MEETING FOR NLM, MANAGED THE
EVALUATION OF 3278 APPLICATIONS
AND OVERSEEN OVER 51% OF ALL
GRANT REVIEWS CONDUCTED BY THE
GRANT REVIEW OFFICE.
THESE ARE IMPRESSIVE
ACCOMPLISHMENTS AND THEY REFLECT
HER EXCEPTIONAL DEDICATION,
ORGANIZATIONAL EXPERTISE AND
DEEP UNDERSTANDING OF THE
SCIENTIFIC LANDSCAPE.
HER STRATEGIC PLAN TEEJIC LEADER
SHOULD UPON AS DIRECTLY
CONTRIBUTED TO THE FUNDING OF
HIGH IMPACT, TRANSFORMATIVE
RESEARCH THAT ALIGNS WITH NLM'S
GOAL IMPROVING THE QUALITY OF
WELL AND EXPANDING KNOWLEDGE
WITHIN THE BIOMEDICAL AND HEALTH
FIELDS.
CONGRTULATIONS TO DR. ZANG FOR
EROUTSTANDING AND EXCEPTIONAL
SERVICE.
NEXT SLIDE, PLEASE.
THE SECOND AWARD PRESENTED IS
THE FRANK B. ROGERS AWARD.
THIS AWARD WAS ESTABLISHED IN
1989 BY THE NLM DIRECTOR.
THE PURPOSE OF THIS AWARD IS TO
RECOGNIZE EMPLOYEES WHO MADE
SIGNIFICANT CONTRIBUTIONS TO THE
LIBRARY'S FUNDAMENTAL
OPERATIONAL PROGRAMS AND
SERVICES.
EMPLOYEE ELIGIBLE EMPLOYEES ARE
THOSE CURRENTLY OR PREVIOUSLY
EMPLOYED BY THE NLM DURING 2024.
NEXT SLIDE.
THIS YEAR, WE ARE PLEASED TO
PRESENT THE FRANK B. ROGERS
AWARD TO 2 RECIPIENTS FIRST THE
AWARD IS PRESENTED TO
DR. O'LEERY, STAFF SCIENTIST
WITH THE INFORMATION AND
DELIVERY BRANCH OR SEC +, THAT'S
IN THE NATIONAL CENTER FOR
BIOTECHNOLOGY INFORMATION.
SHE SERVES AS THE NCBI DATA
SET'S PRODUCT OWNER WHICH
PROVIDES A PLATFORM THAT
STREAMLINES ACCESS TO HIGH
QUALITY GENOMIC DATA AND
METADATA.
AND DR. O'LEARY WITH THE NCBI'S
DATA SETS AND APPROVED THROUGH
INTEGRATED RETRIEVE AT TOOLS AND
APIs TO STREAMLINE DATA
ACCESS.
SHE ALSO INSURED THE USE OF STAN
ARDIZEED FORMATS SUCH AS JACON
AND ECB AND IN ALIGNING WITH THE
FAIR PRINCIPLES BEING FINDABLE,
ACCESSIBLE, INTEROPERABLE AND
REUSABLE.
OR CONTRIBUTIONS INSURE THAT
RESEARCHERS CAN EASILY RETRIEVE
AND UTILIZE ESSENTIAL BIOLOGICAL
DATA SETS LEADING TO GRITTER
--
GREATER USE OF THE RESOURCES.
WE CONGRATULATE THE DOCTOR.
NEXT SLIDE, PLEASE.
MR. CYBER IS A TECHNICAL
SPECIALIST WITHIN THE HEALTH
DATA BRANCH IN THE USER SERVICES
AND HE IS RECOGNIZED FOR
OUTSTANDING LEADSHIP IN
ADVANCING THE DEVELOPMENT OF
MEDICAL SUBJECT HEADINGS OR MEH
BY IMPROVING WORK FLOWPS AND
ESTABLISHING KRIST TERIAR
MEDICAL BIOLOGY TERMINATION,
MESH IS CRITICAL FOR INDEXING
AND RETRIEVING BIOMEDICAL
INFORMATION ACROSS THE DPLOAB.
DURING THE DIVISION'S
REORGANIZATION HE LED A PROJECT
AND CREATED A DOCUMENT FOR
CREATING A TICKET SYSTEM AND
UPDATING NEW MESH TERMS.
HIS LEADERSHIP INSURED HIS TEAM
AND THE PROJECT ABROAD AND
RESULT NOTHING A MORE
TRANSPARENT AND STRUCTURED MESH
TEAM, CONGRATULATIONS TO
DR. O'LEARY, AND MR. SEIBER T ON
THEIR ACCOMLISHMENTS AND WITH
THAT WE CONCLUDE THE AWARDING.
CONGRATULATIONS TO ALL.
>> CONGRATULATIONS TO ALL,
DR. O'LEARY AND MR. SEIBERT,
NEXT UP WE HAVE DR. RICHARD
PALMER WITH THE APPROVAL OF THE
TRIENNIAL REPORT.
-- OH, SORRY BEFORE THAT, WE
NEED TO -- I'M SEEING IN THE
CHAT FROM DR. PAUL, WE NEED DO A
VOTE FOR THE BOARD CHAIR.
OKAY, SO WE NEED A VOTE TO
CONFIRM PHILLIP WALKER AS THE
BOARD CHAIR FOR THE NATIONAL
LIBRARY OF MEDICINE.
>> THAT WILL TAKE A MOTION.
>> SO MOTION?
>> SO MOVED.
>> SECOND?
>> SECOND.
>> AND ALL IN FAVOR?
>> AYE,.
>> SO WE HAVE A CONNIRMATION OF
PHILLIP WALKER AS THE NEXT
NATIONAL LIBRARY OF MEDICINE
BOARD OF REGENTS CHAIR.
[ APPLAUSE ]
>> THANK YOU.
SO THE TRIENNIAL INCLUSION
REPORT OVERVIEW FROM RICHARD
PALMER.
>> THERE YOU GO, YOU SHOULD BE
ABLE TO HEAR ME NOW.
SO ONCE EVERY 3 YEARS WE COME
TOGETHER TO REVIEW WHO IS
PARTICIPATED IN NLM FUNDED
RESEARCH THAT ENROLLED HUMAN
PARTICIPANTS.
SO THE TRIENNIAL INCLUSION
REPORT, A REQUIREMENT OF PUBLIC
HEALTH SERVICE ACT IS THAT EACH
IC THAT SUPPORTS CLINICAL
RESEARCH MUST PREPARE A
TRIENNIAL ADVISORY COUNCIL
REPORT CERTIFYING COMPLIANCE
WITH THE NIH POLICY ON ENCLIEWGZ
GUIDELINES.
NIH'S POLICY STATES THAT WOMEN,
MEMBERS OF RACIAL AND ETHNIC
MINORITY GROUPS AND INDIVIDUALS
OF ALL AGES MUST BE INCLUDED IN
NIH FUNDED CLINICAL RESEARCH
UNLESS A CLEAR AND COMPELLING
RATIONAL AND JUSTIFICATION IS
ESTABLISHED WITHIN THE
SCIENTIFIC PROTOCOL.
SO BEFORE I GO ON TO THE DATA I
JUST WANT TO TALK ABOUT SOME
ROLES AND RESPONSIBILITIES.
SO THERE ARE 2 BROAD ROLES OR 2
BROAD PERSPECTIVES.
ONE IS NIH RESPONSIBILITIES, AT
NIH, ALL STAFF IN THE EXTRAMURAL
SIDE MUST TAKE TRAINING IN
INCLUSION.
ADDITIONALLY, NIH STAFF MUST
PROVIDE OVERSIGHT OF FUNDED
PROJECTS AND MONITOR THE
PROGRESS MADE IN RECRUITMENT OF
RESEARCH PARTICIPANTS.
APPLICANTS ALSO HAVE A
RESPONSIBILITY IN THE INCLUSION
MONITORING WHEN AN APPLICANT
SUBMITS AN APPLICATION TO NIH
THAT INTENDS TO ENROLL HUMAN
PARTICIPANTS AN ENROLLMENT TABLE
MUST BE PRESENT THED IN THAT
INITIAL APPLICATION.
AND THEN APPLICANTS WHO DO
ENROLL, HUMAN PARTICIPANTS MUST
PROVIDE YEARLY CUMULATIVE DATA
ON THEIR ENROLLMENT.
ADDITIONALLY THERE'S ALSO
RESPONSIBILITIES ACROSS THE
EXTRAMURAL STAFF.
FOR PEER REVIEW, REVIEW OFFERS
INSURE THAT PEER REVIEW GROUPS
EVALUATE THE ADEQUACY OF PLANS
TO INCLUDE WOMEN, MINORITY ANDS
INDIVIDUALS FROM ALL AGE DPROWPS
AS PROARNT FOR -- APPROPRIATE R
THE SCIENTIFIC GOALS OF THE
RESEARCH.
PEER REVIEWERS THEN RATE IT AS
ACCEPTABLE OR UNACCEPTABLE, IF
IT'S UNACCEPTABLE, THAT'S A BAR
FOR FUNDING AND MUST BE
CORRECTED BEFORE AN ARK WARD IS
MADE.
PROGRAM OFFICERS ALSO HAVE
RESPONSIBILITIES, WHEN PROGRAM
OFFICERS, DEVELOP NOTICES OF
FUNDING OPPORTUNITIES, LANGUAGE
REQUIRING WOMEN MINORITIES AND
INDIVIDUALS FROM ALL AGE GROUPS
MUST BE INCLUDED AS APPROPRIATE
TO THE SCIENTIFIC GOALS OF THE
NOFO.
PROGRAM OFFICERS MUST ALSO
REVIEW THE INCLUSION OF
INFORMATION IN APPLICATIONS FOR
COMPLIANCE WITH NIH POLICY, AND
PROGRAM OFFICERS MUST ALSO
MONITOR THE PROGRESS MADE
IMPROVEMENT OF PARTICIPANTS TO
REACH THE GOAL SET FORTH IN THE
ORIGINAL APPLICATION.
OUR GRANTS MANAGEMENT TEAM
AWLINGS HAS ROLES, THEY INSURE
THAT THE APPROPRIATE TERMS AND
CONDITIONS OF AWARDS ARE
INCLUDED IN THE NOTICE OF OF AD
AND THE INFORMATION AROUND THE
DOCUMENT IN THE FILE AND THAT
ALL INCLUSION REPORTS ARE
SUBMITTED TIMELY AND FINALLY,
THERE'S ALSO BOARD OF REGENTS
RESPONSIBILITIES AND THAT'S WHY
WE'RE HERE TODAY.
BOARD OF REGENTS INSURES THAT
NLM'S FUNDED RESEARCH IS
INCLUSIVE WITH RESPECT TO WOMEN,
RISK ASSESSMENTS, ETHNICITY AND
ACROSS THE LIFE SPAN. AND
THAT'S WHAT I WOULD LIKE TO HAVE
A CONVERSATION WITH YOU TODAY
ABOUT.
SO LET'S GET INTO THE INCLUSION
DATA.
ALL DAT SAN FRANCISCO GENERATED
BY GRANTEES AND PUT INTO THE
SYSTEM.
DATA AGGREGATED TO THE NIH AND
INSURED TO PROVIDE ANON
IMPEDIMENTSITY.
SO ALL DATA PROVIDED IS IN
PERCENTAGE FORM TO NLM.
SO BETWEEN FISCAL YEAR 22 AND 24
WE HAD A TOTAL OF 97 INCLUSION
DATA RECORDS, 26 STUDIES IN
FISCAL YEAR 22, 34 STUDIES IN
FISCAL YEAR 23 AND 37 STUDIES IN
FISCAL YEAR 24 ENROLLED HUMAN
PARTICIPANTS AND JUST TO GIVE
YOU A PERSPECTIVE, NLM HAS ABOUT
300 ACTIVE STUDIES IN EVERY
FISCAL YEAR, SO ONLY ABOUT 10%
OF OUR STUDIES ARE ACTUALLY
ACCRUING HUMAN PARTICIPANTS.
AND THAT IS PREDOMINANTLY A
REFLECTION OF THE TYPE OF
SCIENCE THAT WE FUND HERE AT
NLM, IT'S THAT'S VERY DATA
CENTRIC, THAT IS THAT USES
SECONDARY DATA.
IN THESE CASES WHERE THERE'S
ENROLLMENT OF HUMANS, IT'S FOR
PRIMARY DATA COLLECTION, SO WHEN
WE LOOK AT THE TOTAL NUMBER OF
INDIVIDUALS ENROLLED IN NLM
STUDIES BETWEEN FISCAL YEAR 22
AND 24, A TOTE AFRONS OF 36,000
IN 85, 6900 IN 23, AND THEN IN
24 WE HAD 18,000 INDIVIDUALS WHO
PARTICIPATED IN NLM FUNDED
RESEARCH STUDY.
I WILL SAY THAT IN 2024, THERE
IS AN ANOMALY, WE HAD 1
INVESTIGATOR WHO DID NOT COLLECT
DEMOGRAPHIC DATA ON 12,000
PARTICIPANTS, SO IT SKEWSAUR
2024 DATA.
SO WHEN WE LOOK BY ENROLLMENT BY
SEX OVER THE 3 YEARS WE SEE
THERE ARE MORE FEMALES THAN
MALES THAT PARTICIPATE IN NLM
SPONSORED STUDIES, 62% IN 22,
AND 23, AND THEN IF WE REMOVE
THE DATA, OF UNKNOWNS FROM 24,
IT MIRRORS 22 ASK 23.
SO IN GENERAL THERE ARE MORE
FEMALE PARTICIPANTS AND NLM
STUDIES THAN MALE PARTICIPANTS.
IN TERMS OF RACE, THE MAJORITY
OF PARTICIPANTS ARE WHITE,
FOLLOWED BY BLACK OR AFRICAN
AMERICANS, AND AND YOU KNOW WE
HAVE MODEST PARTICIPATION IN
NATIVE HAWAII AND THEN PACIFIC
AND ALASKA NATIVES.
AND THEN IF WE LOOK AT THE DATA
OF 2024, THE DATA RESEMESTERS
THAT OF 2022, AND 2023.
WHEN WE LOOK AT EGHT INISSITY WE
HAVE MORE NONHISPANIC OR NOT
LATINAS PARTICIPATING IN NLM
STUDIES THAN LATINO HISPANICS.
AND THEN FINALLY, WHEN WE LOOK
AT ENROLLMENT BY AGE AS A
REFLECTION OF -- THROUGH THE
LIFE SPAN, WE DON'T HAVE THAT
MANY CHILDREN OR INDIVIDUALS
OVER THE AGE OF 65, OLDER ADULTS
WHO PARTICIPATE IN NLM SPONSORED
RESEARCH, THE MAIORITY OF
PARTICIPANTS ACROSS THE YEARS
ARE BETWEEN THE AGES OF 18 AND
64.
SO -- LET'S -- 1 OF THE
STANDARDS TO NIH ARE
REPRESENTATIVE TO THE ENROLLMENT
OF POPULATION IS TO LOOK AT THE
U.S. CENSUS DATA AND I PULLED
2024 CENSUS DATA, AND WAWE WILL
SEE IS THAT FOR PRETTY MUCH ALL
THE RACIAL AND ETHNIC GROUPS OUR
MINORITY RACIAL AND ETHNIC
GROUPS NLM HAD MORE HIGHER
PERCENTAGE, HIGHER PERCENTAGES
THAN THE U.S. CENSUS DATA.
THE ONLY EXCEPTION ARE FOR
WHITES WHERE THE AVERAGE
PARTICIPANT -- THE AVERAGE
NUMBER OF PARTICIPANT WAS 47%,
WHEREAS IN THE U.S. POPULATION,
WHITES MAKE UP 58%.
WHEN WE LOOK AT AGE, WE SEE THAT
NLM, MADE OF 3 PBT 4% OF THE
PARTICIPANTS WHEREAS IN THE U.S.
POPULATION CHILDREN RESPECT
RESENT 2%, FOR ADULTS 65 AND
OLDER WE HAD 4.6% OF
PARTICIPANTS IN THE U.S.
POPULATION IT'S 18% AND FOR
ADULTS BETWEEN 18-64, NLM
PARTICIPANTS MADE UP 67% OF NLM
PARTIC PLAN TO ANALYZE BY AGES
WERE FROM THE AGE GROUP WHEREAS
IN THE U.S. POPULATION IT'S 60%.
SO JUST IN SUMMARY, YOU KNOW NLM
IS MEETING NIH'S POLICY OF
INSURING ADEQUATE REPRESENTATION
OF WOMEN AND RACIAL ETHNIC
MINORITIES IN CLINICAL RESEARCH,
NLM'S INCLUSION AMONG THE LIFE
SPAN IS NOT PARALLEL TO U.S.
CENSUS DATA SO OPPORTUNITIES TO
INCREASE PARTICIPATION OF
CHILDREN IN OLDER ADULLS IN
NLM'S RESEARCH PROGRAM EXIST.
HOWEVER, WE DO HAVE TO THINK
ABOUT OUR OVERALL PORTFOLIO, AND
MANY OF THE TOOLS AND METHODS
THAT ARE INVESTIGATORS DEVELOP
ARE APPLICABLE TO ALL
POPULATIONS AND ALL DEMOGRAPHIC
GROUPS AND SO, BUT THIS
INCLUSION REPORT IS REALLY ONLY
FOCUSED ON RESEARCH THAT ENROLLS
PARTICIPANTS.
YOU KNOW AT NLM, WE DO NOT HAVE
PHASE 3 CLINICAL TRIALS, AND WE
DON'T HAVE MANY INTERVENTION
STUDIES, SO OUR ENROLLMENT
NUMBERS REFLECT THAT, BUT EVEN
THOUGH IT HAS -- EVEN THOUGH,
YOU KNOW WE DON'T ENROLL LARGE
NUMBER OF PARTICIPANTS IN NLM
FUNDED, YOU KNOW OUR INCLUSION
DATA PRETTY MUCH MIRRORS THE
U.S. POPULATION FOR RACIAL AND
ETHNICITY AS WELL AS FOR GENDER.
SO WITH THAT, I WILL TAKE
QUESTIONS OR COMMENTS FROM THE
BOARD.
>> THANK YOU, RICHARD.
CHRIS?
>> YEAH, RICHARD, THANK YOU VERY
MUCH FOR THAT COMPREHENSIVE
REPORT, THE INCLUSION OF
CHILDREN AND OLDER INDIVIDUALS
IS A PROBLEM ACROSS ALL OF NIH
AND I'M WONDERING IF YOU HAVE A
SENSE BECAUSE IT'S A LIMITED
NUMBER OF PROJECTS WHETHER THERE
ARE MISSED OPPORTUNITIES FOR THE
EXISTING PORTFOLIO TO INCLUDE
PARTICULARLY CHILDREN OR WHETHER
THERE ARE SORT OF SCIENTIFIC
REASONS BECAUSE THE CONDITIONS
DON'T AFFECT CHILDREN.
DO YOU HAVE A SENSE OF THAT?
>> I THINK IT'S BECAUSE -- SO,
YOU KNOW WE HAVE 2 OTHER ICs
AT NIH CHILD HEALTH AND HUMAN
DEVELOPMENT AND NIH, AND THE
MAJORITY OF INVESTIGATORS WHO
ARE FOCUSING ON THOSE
POPULATIONS GO TO THOSE ICs
FOR FUNDING.
>> BUT ACTUALLY 10% OF THE
PEDIATRIC RESEARCH IS FUNDED AT
NICHD, SO 90% IS FUNDED AT OTHER
ICs, SO I WAS WONDERING IF
THERE WAS AN EXPLANATION FOR
THAT, IT'S 1 THING TO PRESENT
THE DATA, IT'S ANOTHER TO SAY
THEY WERE INAPPROPRIATELY
EXCLUDED, MAYBE THAT WAS AN
OPPORTUNITY TO THE FUTURE TO
ENCLOUD CHILDREN IN THOSE
STUDIES.
>> RIGHT, AND YOU KNOW THAT'S
WHAT PEER REVIEW DOES.
PEER REVIEW IS SUPPOSED TO
INSURE THAT ALL INDIVIDUALS
ACROSS THE LIFE SPAN ARE
INCLUDED IN RESEARCH AND IF
THERE'S NO RATIONAL FOR
EXCLUDING A POPULATION, THEN IT
SHOULD BE -- THEN THAT
APPLICATION WOULD BE RATED AS
UNACCEPTABLE.
SO I THINK IT'S THE TYPE OF
APPLICATIONS WE GET.
>> IT VERY WELL MAY BE, AND I
WAS JUST PROBING ON THAT, BUT
THANK YOU IF ARE THAT RESPONSE,
APPRECIATE IT.
NMICHELLE, I THINK YOU -- I
THOUGHT MICHELLE HAD HER HAND
UP.
SORRY, JIM?
>> YEAH, THANK YOU.
SO I APPLAUD NLM'S EFFORT, BEING
BROAD LYE INCLUSIVE IN STUDIES,
I AM HEARING AND I THINK A LOT
OF OTHER PEOPLE ARE HEARING
ABOUT GRANTS NOT BEING RENEWED
OR GRANTS BEING REVIEWED BECAUSE
THEY SPECIFICALLY MENTION THINGS
LIKE DIVERSITY AND INCLUSION AND
YOU KNOW WE HEAR ABOUT THIS IN
THE NEWSPAPER, I HEAR IT ABOUT
ON THE NEWS, HEAR IT ABOUT FROM
MY COLLEAGUES AT THIS INSTITUTE,
MY INSTITUTION AND OTHERS, I
WONDER IF YOU CAN COMMENT ON
WHETHER OR IN THE THAT IS
IMPACTING NLM FUNDING?
>> IT'S NOT IMPACTING NLM'S
FUNDING SO NIH ENCLIEWGZ
POLARIZED SO IS STILL IN FULL
EFFECT AND IT IS EXPECTED THAT
ALL APPLICANTS OR APPLICATIONS
TO NIH, TAKE INTO ACCOUNT RACIAL
AND ETHNIC MINORITIES, WOMEN AND
INDIVIDUALS ACROSS THE LIFE
SPAN.
THAT'S AN EXPECTATION AND THAT
POLICY HAS NOT CHANGED.
RIGHT, BUT NEVERTHELESS WE ARE
HAVING PEOPLE GET THEIR
PROPOSALS QUESTIONS BECAUSE THEY
BRING THOSE ISSUES UP AND I SEE
SOME NODS FROM OTHER
INVESTIGATORS.
SO FLYING IN THE FACE OF -- YES,
I UNDERSTAND THE POLICY AND WE
HAVE TO INCLUDE THESE STATEMENTS
IN OUR GRANTS AND YET, WHEN WE
DO THEY TRIGGER SOMETHING THAT
THEN BRINGS ISSUES BACK WHERE
GRANTS ARE BEING TERMINATED,
GRANT RENEWALS ARE QUESTIONS AND
SO ON.
I'M SURE YOU'VE HEARD ABOUT
THESE AT LEAST UNOFFICIALLY.
>> OF COURSE, I MEAN, I THINK
THESE GRANTSA THAT HAVE BEEN
TERMINATED HAVE BEEN TERMINATED
BECAUSE OF AGENCY PRIORITIES AND
THEY'RE -- AND EVERY GRANT HAS
SPECIFIC REASONS FOR WHY THEY'RE
TERMINATED.
IN TERMS OF THE INCLUSION
POLICY, THERE'S STILL AN
EXPECTATION AT NIH THAT
APPLICANTS INSURE THAT THERE'S
BROAD PARTICIPATION OF EVERYONE
IN THEIR STUDIES AND I THINK
WHEN WE LOOK AT THE GRANTS THAT
HAVE BEEN TERMINATED IT MAY BE
THAT THE PARTICIPATION WASN'T AS
BROAD AS AGENCY EXPECTATIONS
WOULD EXPECT.
IEN MOO I CAN'T SPEAK TO
ULTIMATELIA THE GRANTS THAT HAVE
BEEN TERMINATED AT NIH, BUT YOU
KNOW THERE IS AN EXPECTATION
THAT YOU KNOW THAT APPLICANTS
DO, YOU KNOW RENAL CANCER ROLL
AS BROAD A SWATH OF THE U.S.
POPULATION AS POSSIBLE IN THEIR
RESEARCH TO MAKE SURE THAT
FINDINGS ARE APPLICABLE TO
EVERYONE.
>> ANYBODY WANT TO HELP ME OUT
HERE?
>> WE CAN DISCUSS THIS LATER.
>> YEAH, BECAUSE I THINK YOUR
GOALS FOR THE TRIENNIAL REPORT
AND WHAT'S HAPPENING WITH THE
SORT OF CSR PROCESS AND OTHER
THINGS MIGHT NOT ALIGN AS WELL
AS THEY SHOULD RIGHT NOW.
BUT I HAVE MIKE AND CHRIS
WAITING TO ASK QUESTIONS SO WE
WILL MOVE ON TO THEIR QUESTIONS.
>> ALL RIGHT, THANK YOU.
I AM CURIOUS, YOU KNOW GIVEN THE
LARGER REPRESENTATION OF ETHNIC
GROUPS YOU PRESENTED, I'M
GUESSING EVEN IN MY OWN WORK,
THE STANDARD CRITERIA FOR OLDER
ADULT, 65 OR OLDER MAY NOT BE
CULTURALLY APPROPRIATE IN THE
COMMUNITIES, I WONDER IF OLDER
ADULTS ARE UNDERREPRESENTED IN
THE DATA BECAUSE OF THAT.
>> IT COULD BE POSSIBLE.
IT'S POSSIBLE; YOU KNOW WE'RE
RELIANT ON THE DATA THAT PIs
PRESENT TO US.
BUT PART OF IT, YOU KNOW WHEN I
LOOK AT THE PORTFOLIO, WE DON'T
HAVE MANY STUDIES OR ANY STUDIES
THAT REALLY TARGET OLDER ADULTS
WITHIN OUR PORTFOLIO.
WE DO HAVE STUDIES THAT TARGET
CHILDREN BUT IN COMPARISON TO
OLDER ADULTS WE DON'T, YOU KNOW
MANY OF OUR TOOLS AND METHODS
THAT OUR INVESTIGATORS DEVELOP
ARE APPLICABLE TO ALL
POPULATIONS, YOU KNOW AND ALL
DEMOGRAPHIC GROUPS BUT I DO
THINK THAT THERE MAY BE AN
UNDERREPRESENTED -- YOU KNOW
THAT AGE MAY BE UNDERESTIMATED
FOR OUR POPULATION.
OUR STUDY PARTICIPANTS.
>> YEAH, THANK YOU.
>> AND THEN AGAIN, DEMOGRAPHIC
DATA IS VOLUNTARY, YOU KNOW
INDIVIDUALS DON'T HAVE TO REPORT
IT AND WHAT WE DO KNOW ABOUT AGE
AND THAT WE DON'T ALWAYS REPORT
AGE ACCURATELY.
>> THAT'S TRUE.
KRITION?
>> SO MY QUESTION IS SIMILAR TO
JIM'S OR BUILDS ON JIM'S WHICH
IS WE HAD A GROUP OF RESEARCHERS
AT OUR INSTITUTION WHO WERE
COLLABORATING WITH SOME FEDERAL
EMPLOYEES ON A PROJECT AND WHEN
THEY WERE READY TO PUBLISH THEIR
RESULTS IT INCLUDED GENDER AND
OTHER INFORMATION THAT IS FOR
NOW, APPARENTLY AND THE FEDERAL
EMPLOYEES WHO WERE ON THAT PAPER
ENDED UP WITHDRAWING AND ARE NOT
LISTED AS AUTHORS SO THERE'S
DEFINITELY REAL WORLD IMPACTS
HERE AND I WAS WONDERING, IF
THERE ARE ANY INDICATIONS THAT
THIS POLICY WHICH IS APPARENTLY
IN FULL STANDING WILL CONTINUE
OR BE REVISED OR IF THERE'S ANY
OTHER EXAMPLES WHERE NLM HAS HAD
TO REVISE RESEARCH GOALS OR DO
ANYTHING LIKE WHAT I DESCRIBED
IN APPLICATION OF EXISTING
RESEARCH.
>> RIGHT.
SO MY UNDERSTANDING IS THAT THIS
POLICY IS IN FULL EFFECT AND
THERE'S NO EXPECTATION THAT TELL
BE CHANGED, THAT NIH IS
COMMITTED TO INSURING THAT
RESEARCH FINDINGS ARE APPLICABLE
TO ALL POPULATIONS.
IN TERMS OF THE SECOND PART, YOU
KNOW IT COMES DOWN IT INSURING
THAT RESEARCH SUBMITTED ALIGNS
WITH AGENCY PRIORITIES AND WE
CAN SPEAK ABOUT THAT IN THE
CLOSED SESSION.
>> OKAY, RASMUSS AND THEN DEANA.
>> I WANT TO FOLLOW UP ON SOME
OF THESE QUESTIONS BUT MAYBE
MORE PRACTICALLY, HOW -- WE USED
TO HAVING STUDY SECTIONS PROGRAM
DIRECTORS AND COUNCIL THAT MAKE
DECISIONS AND SO ON, ON
EXTRAMURAL FUNDING, AND MAYBE
YOU COULD TELL US ABOUT LIKE
WHAT ARE THE -- IN TERMS OF
EXPERIENCE PEOPLE HAVE THAT
GRANTS MENTIONED GENDER FOR
EXAMPLE, THEY COULD BE
TERMINATED, WHAT IS THE SORT OF
OPERATING PROCEDURE, HOW IS THAT
ACTUALLY DONE?
IS THAT INITIATED SIMPLY BY THE
PROGRAM DIRECTOR?
OR ARE THERE OTHER ELEMENTS OR
OTHER PEOPLE INVOLVED IN MAKING
THOSE DECISIONS?
HOW ARE DECISIONS MADE ON THAT?
>> WELL, I THINK WHAT'S CLEAR IS
THAT WHEN WE EVALUATE FUNDING IS
THAT WE HAVE TO INSURE THAT
FUNDING ALIGNS WITH THE AGENCY
PRIORITIES AND DEPENDING ON THE
SITUATION AT TIMES, SOME
APPLICATIONS MAY BE MODIFIED TO
INSURE THAT IT ALIGNS COMPLETELY
WITH AGENCY FUNDING, WHEN
APPLICATIONS ARE NOT ABLE TO BE
MODIFIED, THEN FUNDING ISN'T
AWARDED TO THOSE APPLICATIONS.
AND IS THIS SIMPLY EXCLUSIVELY
THE PROGRAM DIRECTOR THAT DOES
THIS?
IS ANY ALGORITHMS INVOLVED IN
THIS?
>> THERE'S MULTIPLE LEVELS OF
REVIEW FROM THE NIH TO THE
AGENCY THAT ARE INVOLVED.
>> COULD YOU GO IN DETAIL ON
EXACTLY WHO THOSE STEPS ARE AND
HOW THEY HAVE CHANGED OVER THE
PAST 6 MONTHS?
>> WELL, SO LET'S FOCUS ON THE
INCLUSION REPORT BECAUSE THE
GOAL RIGHT NOW IS FOR INCLUSION,
AND THEN WE CAN TALK ABOUT THE
EXTRAMURAL ACTIVITY DURING THE
LATTER PART OF THIS
CONVERSATION.
SO I WILL SEND IT BACK TO YOU
FOR ANYTHING IN EMERGING ITS OF
THE TRIENNIAL REPORT.
>> I SAW DEANA WANTED TO I THINK
MAKE A COMMENT.
SHE HAS A LINK ABOUT THE --
INFORMATION NYEAH, I JUST WANTED
TO POINT OUT A LOT OF
INFORMATION THAT I PUT OUT ON
THE CHAT AND SOME ARE JUST
DRESSING QUESTIONS EVERYONE HAD,
THIS IS ABOUT THE GRANTS AND
FUNDING INFORMATION STATUS AS
WELL AS THE GRANTS AT IN, IH HAS
TERMINATED AS WELL AS THE LINK
TO THE INCLUSION POLICY AND I
DID WANT TO POINT OUT THAT THE
INCLUSION POLICY IS FOR LUNG
CANCER MAN SUBJECTS AND IT'S THE
INCLUSION OF WOMEN AND
MINORITIES AS PARTICIPANTS IN
RESEARCH INVOLVING HUMAN
SUBJECTS AS WELL AS ACROSS THE
LIFE SPAN BUT IF THE TRIENNIAL
REPORT IS NOT BASED ON, YOU KNOW
DEI RELATED RESEARCH PER SE BUT
IT IS ON INCLUSION OF WOMEN AND
MINORITIES IN CLINICAL STUDIES.
BUT AS RICHARD SAID, WE CAN TALK
ABOUT THE OTHER THINGS LATER,
BUT I DID WANT TO POINT OUT THE
LINKS THAT I PUT IN THE CHAT.
>> OKAY, SO, IN THE CLOSED
SESSION WE WILL HAVE AN
OPPORTUNITY TO EXPLORE THE
QUESTIONS RAISED BY I DIDN'T
MEAN AND RASMUS AND CHRIS TO AN
EXTENT.
CHRIS DID YOU HAVE ANOTHER
QUESTION RELATED TO THE
TRIENNIAL REPORT IN OKAY,
BECAUSE IT HAS YOUR HAND UP.
RICHARD, ACTUALLY HAD A BRIEF
QUESTION RELATED TO WELL, WHAT
SEEMED TO BE FEWER, OLDER
ADULTS, YOU KNOW AS MORE DIGITAL
RESOURCES APPEAR AND WE'RE
HAVING MORE ADULTS WITH
COGNITIVE DECLINE, I THINK IT
BECOMES IMPORTANT TO LOOK AT NOW
ADULTS, ESPECIALLY THOSE
EXPERIENCING COGNITIVE DECLINE
ENGAGE WITH INFORMATICS TOOLS OR
RESOURCES.
AND SO, DO YOU THINK THAT THERE
ARE OPPORTUNITIES -- EENOUGH
OPPORTUNITIES TO EXPLORE THAT,
THIS IS A GROWING ISSUE IN THE
U.S.?
>> I DEFINITELY DO, AND I THINK
THAT'S, YOU KNOW A GREAT AREA OF
INVESTMENT.
WE'RE IN NIH, AS WE PUSH INTO
THIS NEW DATA CENTRIC INFORMATIC
SPACE AND COGNITIVE DECLINE IN
OLDER ADULTS AND I DEFINITELY
THINK THERE'S ALSO OPPORTUNITIES
TO PARTNERSHIP WITH NIA IN THAT
AREA, AND SO I DO THINK THAT WE
WILL EXPLORE OPPORTUNITIES WITH
CHILD HEALTH AND NIA TO SEE, YOU
KNOW THERE ARE SOME SHARED, YOU
KNOW IS THERE A SHARED VISION IN
AREAS OF THE RESEARCH ECOSYSTEM
THAT WE CAN COLLABORATE ON.
>> THANK YOU.
OKAY, SO THE NEXT AGENDA ITEM,
SORRY I MISSED THIS FOR THE BOR
CHAIR, SO THIS ALSO REQUIRES A
VOTE.
>> IT DOES NOT.
IT'S JUST A PRESENTATION.
>> OH IT'S --
>> IT DOES SAY APPROVAL BUT --
>> IT'S NOT REQUIRED.
>> OKAY.
>> IT WAS AN INFORMATION SESSION
AND TO HEAR THE BOARD'S FEEDBACK
ON ANY POTENTIAL DIRECTIONS THAT
NLM NEEDS TO DO TO INSURE THAT
WE HAVE AN INCLUSIVE STUDY
PARTICIPANTS.
>> OKAY.
THANKS FOR A LIVELY DISCUSSION
AND THANKS FOR YOUR PRESENTATION
OF THE TRIENNIAL REPORT.
>> PERFECT.
>> OKAY, SO WE ARE RUNNING A
LITTLE AHEAD OF TIME, SO I THINK
IT MAKES SENSE TO GO INTO CLOSED
SESSION EARLY.
AND SO, WE ARE NOW GOING TO
PROCEED INTO A CLOSED SESSION,
THIS CONCLUDES THE OPEN PORTION
OF THIS BOARD OF REGENTS MEETING
AND OUR BROADCAST VIDEO.
TO THOSE THAT HAVE BEEN WATCHING
THE VIDEOCAST OF THIS MEETING,
THANK YOU FOR YOUR
PARTICIPATION.