>> WELCOME TO THE FEBRUARY 6,
2024 MEETING OF THE NATIONAL
LIBRARY OF MEDICINE BOARD OF
REGENTS.
IT'S WONDERFUL TO SEE EVERYONE,
A PLEASURE TO CALL THE MEETING
TO ORDER.
AS A REMINDER, THIS MEETING IS
BEING VIDEOCAST TO THE PUBLIC.
BEFORE WE GET STARTED, I'D LIKE
TO EXTEND A WARM WELCOME TO THE
CHIEF OF MEDICAL OPERATIONS,
OFFICE OF THE AIR FORCE SURGEON
GENERAL, ATTENDING FOR THE
SURGEON GENERAL FOR THE FEBRUARY
MEETING.
CONCERNED THOMAS CANTALANI
RETIRED, WE THANK HIM FOR
PARTICIPATION ON THE BOARD.
SO, MOVING ON TO BUSINESS, IT'S
A PLEASURE TO WELCOME MS. JEAN
GARCIA DAVIS AND MS. EDNA
ISHAYIK TO DELIVER A REPORT FROM
THE SURGEON GENERAL.
>> THANK YOU.
I WANT TO THANK THE ENTIRE BOARD
FOR HAVING US AGAIN.
IT'S AN HONOR AND PLEASURE TO BE
HERE.
THANK YOU SO MUCH TO DR. SHERRY
AND WELCOME, DR. AZAD.
THANK YOU ON BEHALF OF OUR TEAM
AND DR. MURTHY FOR OUR WORK
TOGETHER ON BEHALF OF THE ENTIRE
AGENCY AND HHS AS WELL AS U.S.
GOVERNMENT.
WE'RE PLEASED TO BE HERE WITH
YOU.
DR. MURTHY PASSES GREETINGS AND
GRATITUDE.
I WANT TO WELCOME ALSO MY
COLLEAGUE JOINING US TODAY, WHO
WILL BE SHARING MORE ABOUT THE
WORK ON SOCIAL CONNECTION AND
COMMUNITY, FROM OUR OFFICE.
EDNA ISHAYIK.
THANK YOU FOR BEING HERE.
I WANTED TO SHARE AS WE
DISCUSSED LAST TIME, REMINDER TO
PROTECT, PROMOTE, ADVANCE HEALTH
AND SAFETY OF OUR NATION IS OUR
MISSION, AND OUR ENTIRE HEALTH
AND WELL-BEING.
WE NEED TO HELP THE PUBLIC
UNDERSTAND THE ISSUES AND HOW WE
CAN WORK TOGETHER TO TAKE ACTION
ON THESE IMPORTANT PUBLIC HEALTH
ISSUES.
SHARING OUR MOST RECENT ADVISORY
FROM LAST SUMMER ON THE EPIDEMIC
OF LONELINESS AND SOCIAL
ISOLATION, AND WE'LL BE
PROVIDING AN UPDATE.
FOR TODAY, THIS IS OUR AGENDA,
IF YOU WILL, FOR THE BRIEFING.
I'LL GIVE A BRIEF UPDATE.
I MENTIONED LAST TIME THE
SURGEON GENERAL'S REPORT ON
TOBACCO FORTHCOMING, WE HOPE IT
WOULD BE AT THIS POINT BUT I CAN
SHARE A BRIEF UPDATE AS WELL AS
OUR WORK IN YOUTH MENTAL HEALTH
AND SOCIAL MEDIA, AND MORE
LARGELY AND BROADLY OUR WORK ON
MENTAL HEALTH AND WELL-BEING.
AND THEN WE'LL CLOSE WITH Q&A.
WE WANT TO KEEP YOU ON TIME.
YOU HAVE A BUSY DAY.
AS A BRIEF UPDATE, AS WE
DISCUSSED AT OUR LAST TOUCH
POINT TOGETHER, OUR NEXT SURGEON
GENERAL'S REPORT ON ELIMINATING
TOBACCO-RELATED DISPARITIES WILL
BE LAUNCHING, WE'RE HOPEFUL, IN
THE NEXT FEW MONTHS, WE'LL
CONTINUE TO KEEP YOU POSTED.
IT'S CURRENTLY CONDITION THE HHS
CLEARANCE PROCESS UNDERGOING A
FIRST OF TWO REVIEWS AT THIS
POINT.
AND SO, AGAIN, WE'LL UPDATE YOU
AS WE GET CLOSER TO ROLLOUT.
AND NOTED HERE FOR THOSE WHO
MAYBE WEREN'T WITH US LAST TIME,
DID I SHARE THIS IS AN UPDATE
FROM THE LAST SURGEON GENERAL'S
REPORT ON SMOKING AND HEALTH, IN
2020, SMOKING CESSATION, AND
HOPEFULLY THIS ONE WILL COME OUT
THIS YEAR.
THE PREVIOUS ONE THAT WAS
SPECIFIC TO HEALTH DISPARITIES
FOR TOBACCO WAS IN 1998, AND
THAT WAS -- THAT'S LISTED HERE.
WE'RE EXCITED TO HELP ROLL THIS
OUT, ESPECIALLY AT THIS TIME.
I WANT TO SHARE TOO THAT IT'S
QUITE A HISTORIC TIME.
ON JANUARY 11 OF LAST MONTH WE
DID ACTUALLY CELEBRATE THE FIRST
EVER SURGEON GENERAL'S REPORT ON
SMOKING AND HEALTH FROM 1964,
AND SO WHILE THERE'S BEEN SO
MUCH PROGRESS SINCE 1964, IN THE
YEARS THAT FOLLOWED IN TERMS OF
POLICY, PROGRAM, AND PRACTICE,
WE HAVE FAR MORE TO DO
ESPECIALLY FOR DISPARITIES THAT
STILL CONTINUE TODAY, BUT EVEN
FELT AMONG DISPROPORTIONATELY
IMPACTED GROUPS.
WE'RE EXCITED TO SHARE THE VIDEO
WITH YOU ALSO.
I CAN SHARE IT WITH YOU AFTER
THAT DR. MURTHY SHARED ACROSS
OUR PLATFORMS REGULAR NIGH --
RECOGNIZING THE ROLE NIH PLAYED,
EXCITING TO LEARN MORE BEING
PART OF THIS PROCESS TODAY.
I ALSO DO WANT TO NOTE TOO ONE
BRIEF UPDATE THAT WE CAN ALSO
SHARE AFTER IS AROUND THE CDC
HAS LAUNCHED ITS LATEST TIPS
CAMPAIGN, THAT'S CONNECTED TO
THIS WORK, AND SPECIFIC TO
TOBACCO-RELATED DISPARITIES
THERE ARE NEW LIVED EXPERIENCES
THAT ARE SHARED FROM REAL
VOICES, REAL PEOPLE, SO I CAN
SHARE THAT WITH YOU AS WELL,
NOTING THE CAMPAIGN WHICH
STARTED IN 2012, THIS ACTUALLY
HASN'T BEEN UPDATED SINCE JUST
BEFORE THE PANDEMIC SO THERE ARE
A FEW NEW VOICES, INCLUDING ONE,
ALL OF THEM ARE COMPELLING IN
TERMS OF IMPACT, NOT ONLY
INDIVIDUAL IMPACT BUT ALSO
FAMILY INTERPERSONAL AND
COMMUNITY IMPACT, AND ANGIE IS
ONE OF THE MORE RECENT ONES.
SINCE THEY KICKED OFF THIS
CAMPAIGN ACTUALLY YESTERDAY, THE
CDC HAS BEEN WORKING WITH ANGIE
ON A ROLLOUT ACROSS THE COUNTRY,
AND ANGIE SHARES HER EXPERIENCE.
I WANT TO NOTE SPECIFICALLY
STARTING TO SMOKE AS A GAY TEEN
WHEN SHE WAS 15, AND SMOKING
MENTHOL CIGARETTES.
I INVITE YOU TO TAKE A LOOK AT
THE VIDEOS AND LISTEN TO HER
EXPERIENCE THERE.
AS I ALSO MENTIONED, I BELIEVE
OUR LAST MEETING TOGETHER, OUR
WORK CONTINUES AROUND ADVANCING
YOUTH MENTAL HEALTH AND
SUPPORTING YOUTH ACROSS THE
COUNTRY WHEREVER THEY ARE, AND A
REMINDER HERE OF THE LAUNCH OF
OUR OTHER ADVISORY LAST SUMMER,
SURGEON GENERAL'S ADVISORY ON
SOCIAL MEDIA AND YOUTH MENTAL
HEALTH.
I WANT TO BRIEFLY UPDATE.
I'M SURE YOU'VE SEEN IN THE
NEWS, FOR THOSE WE DISCUSSED
THIS LAST TIME, WHO ARE TOUCHED
BY THIS AS PARENTS AND
CAREGIVERS TO YOUTH OF ALL AGES,
AND CHILDREN, DR. MURTHY
CONTINUES TO STAY ENGAGED AND
MORE RECENTLY SINCE THE LAUNCH
OF THE INTERAGENCY TASK FORCE ON
KIDS' ONLINE HEALTH AND SAFETY
THAT WAS ESTABLISHED LAST MAY,
THERE WAS A RECENT AMONG FIVE
CEOS, BIG TECH, DISCUSSING KIDS
ONLINE SAFETY ACT, KOSA.
SINCE THAT TIME ONE OF THE
INTERESTING AND NOTABLE IMPACTS
AROUND PUBLIC SUPPORT OF THIS
BILL AND THE MOST RECENT ONE
CAME FROM SNAPCHAT ENDORSEMENT
ON THE 25th OF JANUARY.
WE CONTINUE TO STAY ENGAGED ON
THIS BIPARTISAN BILL AS WELL AS
TO REALLY HELP EDUCATE AND
ENGAGE THE PUBLIC AND KEY
STAKEHOLDERS ON THIS ISSUE.
LASTLY, I'LL NOTE THAT AS WE'VE
MENTIONED, THE FRAMEWORK FROM
DR. MURTHY AND OUR OFFICE IN
2022, AS WELL AS HEALTH WORKER
ADVISORY BURNOUT AND WELL-BEING
FROM EARLIER THAT SUMMER, SO
NEARLY TWO YEARS, THE
ANNIVERSARY OF THOSE, RECOGNIZE
AND THANK FOR THE WORK YOU
CONTINUE TO DO WITHIN YOUR --
WITHIN THE NATIONAL LIBRARY
ACROSS YOUR HEALTH SYSTEMS AND
ORGANIZATIONS AND INSTITUTIONS
WHERE YOU'RE BASED.
THANK YOU.
WE CONTINUE TO DISSEMINATE THIS
WORK AND STAY ENGAGED.
I WANT TO FLAG MAINLY ON HEALTH
WORKER WELL-BEING THAT THE
NATIONAL ACADEMY OF MEDICINE,
WHERE DR. MURTHY IS CO-CHAIR,
CONTINUES TO PREPARE FOR WHAT IS
BEING CALLED A NATIONAL HEALTH
WORKFORCE WELL-BEING DAY, SO
PLEASE MARK YOUR CALENDARS AND
WE'LL BE SURE TO SHARE MORE
ABOUT THAT AS WE HAVE A TOOL
KIT.
THAT WILL BE ON -- IT WILL KICK
OFF MARCH 11 AND CULMINATE ON
MARCH 18.
I'LL PASS ON TO EDNA.
>> THANK YOU.
CAN YOU HEAR ME?
ALL RIGHT.
I'M AN ASSOCIATE DIRECTOR OF
SCIENCE AND POLICY, OFFICE OF
THE SURGEON GENERAL.
THANKS FOR ALLOWING ME TO SHARE
A LITTLE BIT TODAY ON OUR WORK
ON SOCIAL CONNECTION.
I'LL DO THE BRIEFEST OVERVIEW OF
THE ISSUE IN A FEW WORDS, AND
I'LL SHARE JUST A SAMPLING, A
FEW SAMPLES OF THE WORK OUR
OFFICE HAS BEEN DOING FOLLOWING
THE RELEASE OF THE ADVISORY THAT
JEANE JUST MENTIONED BACK IN
MAY.
AS THE ADVISORY SHARES, SOCIAL
CONNECTION IS WHAT WE KNOW FROM
RESEARCH, IT IS A FUNDAMENTAL
HUMAN NEED.
WE LIKEN IT TO BEING AS
ESSENTIAL TO SURVIVAL AS FOOD
AND WATER.
IT CAN IMPROVE OUR HEALTH,
EXTEND OUR LIFESPANS, AND THE
RELATIONSHIPS AND INTERACTIONS
OF OUR DAILY LIFE CAN ENHANCE
WELL-BEING.
ON THE FLIP SIDE, UNFORTUNATELY
LACKING SOCIAL CONNECTION HAS
VERY SERIOUS HEALTH
CONSEQUENCES, CARDIOVASCULAR
DISEASE, STROKE, DIABETES,
DEPRESSION, COGNITIVE DECLINE,
UNFORTUNATELY JUST A FEW, CAN
SHORTEN LIVES.
A LOT OF THAT RESEARCH IS
CAUSAL.
SO THIS IS TRULY A SERIOUS AREA
OF CONCERN, ESPECIALLY WHEN WE
LOOK AT ESTIMATED PREVALENCE
RATES IN RECENT YEARS INCLUDING
THE PANDEMIC.
IT MAY HAVE BEEN UP TO ONE OUT
OF TWO AMERICAN ADULTS
EXPERIENCING SOME LONELINESS
WITH ISOLATION RATES PEAKING AS
WELL.
SO, BETWEEN THE SEVERITY OF THE
OUTCOMES AND THE POTENTIAL
PREVALENCE RATES, WE FEEL IT'S A
PUBLIC HEALTH -- MAJOR PUBLIC
HEALTH CONCERN.
BUT ADDRESSING SUCH A CONCERN IS
SORT OF A SOCIETY-WIDE PROBLEM
CONSIDERING ALL THE ELEMENTS AND
FACTORS THAT GO INTO AN
INDIVIDUAL'S LEVEL OF
CONNECTEDNESS OR CAN CONTRIBUTE
TO LONELINESS AND ISOLATION.
WE SOMETIMES CALL IT EVERYTHING
EVERYWHERE ALL AT ONCE BECAUSE
IT'S DYNAMIC, IT'S ACROSS THE
LIFESPAN.
IT CHANGES OVER LIFE STAGES, ET
CETERA, AND SOCIAL DEMOGRAPHICS
COME INTO PLAY.
WE HAVE OUR WORK CUT OUT FOR US
AS WE SEEK TO ADDRESS THIS
IMPORTANT ISSUE, BUT WE -- YOU
KNOW, OVERALL, WE BELIEVE THAT
WILL REQUIRE A SORT OF SOCIETAL
APPROACH.
DEFINITELY MORE THAN ANY ONE
OFFICE OR ORGANIZATION CAN
MOBILIZE ON ITS OWN.
SO I'M GOING TO SHARE A FEW OF
THE AREAS WHERE WE ARE SORT OF
PUTTING SOME EMPHASIS.
ONE IS RAISING AWARENESS SIMPLY
ENSURING THAT THE PUBLIC AND
OTHERS ARE AWARE AND SORT OF
THINKING ABOUT THIS ISSUE.
SO THAT'S NUMBER ONE.
WE'RE DOING -- WE'RE EXERTING
SOME EFFORT AROUND NATIONAL
MEASURES AND PREVALENCE
ESTIMATED AS I JUST MENTIONED,
ALSO EXPLORING RESEARCH ON
HEALTHY SOCIAL CONNECTION, WHAT
CONSTITUTES HEALTHY SOCIAL
CONNECTIONS.
I'LL JUST SAY LITERALLY A FEW
WORDS ABOUT EACH ONE.
FIRST, YOU NEED ONE ASPECT OR
ONE INITIATIVE THAT WE EMPLOYED
FOR AWARENESS RAISING WAS
NATIONAL TOUR THAT DR. MURTHY
ENGAGED IN OVER THE PAST COUPLE
MONTHS.
HE STOPPED AT SEVERAL COLLEGES
ACROSS THE COUNTRY, AND THE
ENGAGEMENTS WERE DESIGNED TO BE
FUN, INTERACTIVE EXPERIENCES,
DESIGNED TO SORT OF ENGAGE YOUNG
PEOPLE, ASK THEM TO CONNECT WITH
OTHERS, INVITE THEM TO FIND WAYS
TO INCORPORATE CONNECTION INTO
THEIR DAILY ROUTINES.
AND SORT OF SEE AND SHOW HOW
THAT CAN STRENGTHEN
RELATIONSHIPS AND ULTIMATELY
LEAD TO HEALTHIER, FULLER, MORE
PRODUCTIVE LIVES.
THAT'S ONE ASPECT OF THE
AWARENESS RAISING THAT WE'RE
DOING.
ANOTHER IS ONE ELEMENT THAT WE
HAVE BEEN VERY FOCUSED ON IS
MEASURES AND PREVALENCE
ESTIMATES.
I FEEL LIKE I HAVE A SYMPATHETIC
AUDIENCE SO I WON'T SAY TOO MUCH
WHY WE NEED STANDARDIZED
MEASURES BUT I'LL JUST SAY THAT
RIGHT NOW RESEARCH THAT HAS BEEN
CONDUCTED HAS MOSTLY BEEN
SMALLER CONVENIENT SAMPLES SO WE
TRULY DO NEED STRONG
STANDARDIZED MEASURES.
WE DO HAVE SOME, THANKS TO
AMAZING CHAMPIONS ACROSS THE
GOVERNMENT, SOME FOLKS AT NIH AS
WELL, WE HAVE ALREADY SEEN SOME
MOMENTUM HERE THAT OUR OFFICE IS
HOPING TO CAPITALIZE ON.
THE NIEHS IN 2021 AND 2022 HAD A
QUESTION ABOUT SOCIAL SUPPORT
FOR ADOLESCENTS AND TEENS, AND
THAT DATA IS AVAILABLE ONLINE,
CDC'S BRSSS HAD AN OPTION MODULE
FOR SOCIAL SUPPORT AND LONELY
THAT IS THAT OVER 40 STATES
UTILIZED, WHICH IS A HUGE
VIGOROUS AND ROBUST DATASET,
ONLINE FOR 2022, SOON TO COME
FOR 2023.
EXCITINGLY THANKS TO A
PARTNERSHIP, WE WERE ABLE TO
PLACE MODULES FOR SOCIAL
SUPPORT, LONELINESS, SOCIAL
ISOLATION ON THE HOUSEHOLD PULSE
AND NATIONAL HEALTH PANEL
SURVEYS THROUGH CENSUS,
CONSIDERED EXPERIMENTAL BUT
WE'RE EXCITED TO HAVE SOME DATA
COMING IN THAT WILL BE
NATIONALLY REPRESENTATIVE, AND I
THINK THE DECEMBER 2023 DATA
CYCLE SHOULD BE ONLINE IN THE
NEXT WEEK OR TWO.
MORE TO SAY.
I'LL LEAVE IT AT THAT FOR NOW
AND JUST SHARE BRIEFLY ABOUT THE
LAST AREA I WANTED TO HIGHLIGHT
TODAY, EXPLORING THE EVIDENCE
BASE AROUND HEALTHY SOCIAL
CONNECTION.
SIMPLY A LITERATURE SCAN TO SEE
IF THERE EVEN IS ENOUGH DATA AND
EVIDENCE TO MAKE CLEAR AND
HELPFUL STATEMENTS TO THE PUBLIC
ABOUT WHAT CONSTITUTES HEALTHY
SOCIAL CONNECTION, WHAT DO
PEOPLE NEED, CAN WE SAY THE SAME
WAY WE NEED TO EAT A CERTAIN
NUMBER OF FRUITS AND VEGETABLE,
COULD WE SEE HOW MUCH AND WHAT
KIND OF SOCIAL CONNECTION HUMANS
NEED, JUST QUESTIONS BECAUSE
WE'RE EXPLORING THE LITERATURE
AROUND THIS TO SEE -- TEST THE
WATERS AND SEE WHAT'S THERE, IF
THERE'S SOMETHING HELPFUL WE
COULD AGGREGATE.
SO THAT'S IT.
THOSE ARE THREE OF THE MANY
AREAS WE'RE FOCUSED ON EVEN JUST
WITHIN SOCIAL CONNECTION AND YOU
HEARD FROM JEANE THIS IS ONE OF
OUR PRIORITY AREAS, SO I'LL
LEAVE IT AT THAT AND SEE IF
THERE ARE QUESTIONS.
THANK YOU SO MUCH FOR INVITING
US TO SHARE.
>> ALL RIGHT.
WONDERFUL.
THIS IS JUST AN OUTSTANDING
UPDATE.
THANK YOU BOTH VERY MUCH.
WE HAVE SOME TIME FOR
DISCUSSION.
SO I HAVE A QUESTION THAT I
MIGHT WAIT TO SEE IF THERE ARE
OTHERS ON THE CALL WHO WOULD
LIKE TO FIRST JUMP IN.
OKAY.
DR. OGUNYEMI?
>> I WAS INTRIGUED BY THE IDEA
OF, YOU KNOW, AN ADVISORY ON THE
NUMBER, QUALITY OF SOCIAL
CONNECTIONS SIMILAR TO A LIBRARY
ADVISORY.
HOW DO YOU ENVISION THAT PLAYING
OUT?
I KNOW IT'S IN THE EARLY STAGES
AND YOU'RE STILL THINKING ABOUT
IT.
>> YES, VERY EARLY.
RIGHT NOW WE'RE WONDERING IF
SUCH THINGS COULD EVEN BE
STATED.
IF ANYONE IS INTERESTED WE COULD
PREVIEW WHAT WE HAVE.
WE'RE VERY EARLY ON BUT LOOKS
LIKE THERE'S SOME CLUSTERS,
WHETHER RESEARCH IS RELATIVELY
CLEAR.
BUT THE QUESTION IS THEN COULD
THESE THINGS BE STATED PUBLICLY.
IT FEELS HAZY NOW.
WE'D BE HAPPY TO WORKSHOP WITH
ANY OF YOU.
I THINK ULTIMATELY THE ANSWER IS
I DO THINK MORE RESEARCH IS
NEEDED.
BOTH MORE TO BE COMPILED, WE'RE
ONLY GETTING STARTED, ALSO I
THINK MORE WILL NEED TO BE DONE
FOR SURE.
NOT A SATISFYING ANSWER BUT THAT
GIVES A SENSE OF WHERE WE'RE AT.
>> THANK YOU.
>> COLONEL AZAD?
>> FIRST OF ALL, THANK YOU FOR
HAVING ME.
THAT WAS A GREAT PRESENTATION.
QUICK QUESTION ABOUT
CONNECTIONS.
NOW, DO YOU DISTINGUISH BETWEEN
REAL LIFE CONNECTIONS AND
VIRTUAL CONNECTIONS?
BECAUSE THOSE ARE QUANTITATIVELY
AND QUALITATIVELY DIFFERENT.
OVER.
>> THE RESEARCH IS STILL MURKY,
I'LL PHRASE IT THAT WAY.
WHAT WE FEEL WE COULD SAY RIGHT
NOW IS IT'S IMPORTANT TO HAVE
SOME IN-PERSON CONNECTION, THAT
IF YOU HAVE NO IN-PERSON
CONNECTION THAT WE SEE IN THE
LITERATURE THAT'S NOT GOING TO
BE IDEAL FOR HEALTH.
TAKING INTO CONSIDERATION, YOU
KNOW, DIFFERENCES IN
DEMOGRAPHICS THAT MIGHT, YOU
KNOW, REQUIRE FOLKS TO BE ONLINE
MORE OR LESS, AND SO ALL OF
THOSE SORT OF MORE -- THE FINER
POINTS OF HOW MUCH AND HOW
DIFFERENT IS IT AND, YOU KNOW,
IF YOU TEXT YOUR MOM IS IT THE
SAME AS HEARING HER VOICE, YOU
KNOW, IS IT THE SAME AS GETTING
A HUG?
THOSE FINER POINTS I THINK ARE
STILL MURKY IN THE LITERATURE.
THAT'S ALL WE CAN SAY RIGHT NOW,
AT THIS POINT IN OUR LITERATURE
SCAN.
BUT THERE IS A DISTINCTION, AND
I THINK OTHERS OF YOU MAY KNOW
MORE ABOUT THIS THAN ME.
IT AFFECTS THE BRAIN DIFFERENTLY
DEPENDING ON --
>> THANK YOU.
>> STEVE?
>> THANK YOU.
JUST LETTING YOU KNOW NLM IS
VERY INTERESTED IN THE DATA THAT
YOU'RE COLLECTING AROUND HEALTHY
SOCIAL CONNECTIONS, BOTH RAW
DATA IN THE REPORT AND MAYBE
OFFLINE WE COULD FOLLOW UP ON
OPPORTUNITIES FOR US TO POINT TO
OR HOST DATA TO MAKE SURE IT'S
AVAILABLE TO RESEARCHERS.
I THINK THIS IS REALLY POWERFUL,
SOUNDS LIKE IT PART OF SOCIAL
DETERMINANTS TO HELP IN THE
PRIORITIES AT NIH.
>> WONDERFUL.
I MIGHT JUMP IN ON A RELATED
QUESTION.
I REALLY APPRECIATE BOTH
PRESENTATIONS.
MY QUESTION IS FOR EDNA.
YOU KNOW, THE IMPORTANCE OF
HEALTHY SOCIAL CONNECTIONS ARE
CLEAR.
AND I WANTED TO TOUCH ON THE --
I'M GETTING AN ECHO.
OKAY.
I WANTED TO TOUCH ON THE
MEASURES AND PREVALENCE
ESTIMATES, SO STANDARD MEASURES.
WE LOVE STANDARDS, SO I'M
WONDERING IF YOU CAN SHARE WITH
ME A BIT MORE ABOUT HOW A
RESEARCHER OR COMMUNITY MEMBERS
WHO ARE INTERESTED IN THIS TOPIC
CAN LEARN MORE OR BEGIN TO
INCORPORATE STANDARD APPROACHES
TO UNDERSTANDING SOCIAL
CONNECTIONS.
>> I'M AFRAID I'LL ONLY BE
PARTIALLY HELPFUL BECAUSE WE'VE
BEEN REALLY LOOKING AT THIS FROM
THE PERSPECTIVE OF SORT OF
FEDERAL GOVERNMENT SURVEYS, AND
THAT -- YOU KNOW, THE REAL
ESTATE THERE, I DON'T NEED TO
TELL THIS GROUP, IS VERY TIGHT.
SO WE END UP USING AND LOOKING
AT THE BRIEFEST POSSIBLE
MEASURES, WHICH AREN'T
NECESSARILY -- WHICH WORK VERY
WELL FOR PREVALENCE OR, YOU
KNOW, SERVE THAT PURPOSE AND,
YOU KNOW, A LOT OF TESTING IS
STILL NEEDED TO ENSURE THAT
WE'RE GETTING TO EXACTLY THE
RIGHT QUESTIONS.
BUT I THINK FOR RESEARCHERS, AND
MAYBE MORE LOCAL GOVERNMENT,
THERE MIGHT BE MORE -- SPACE IS
TIGHT BUT THERE MAY BE MORE
LEEWAY TO ASK QUESTIONS, ASK
THEM DIFFERENT WAYS.
SO I DON'T HAVE A GREAT ANSWER
SORT OF HOLISTICALLY, BUT FOR
THE FEDERAL GOVERNMENT WE HAVE A
SLATE OF RECOMMENDED ITEMS AND
MODULES THAT GET AT SOCIAL
SUPPORT, LONELINESS, SOCIAL
ISOLATION.
WE KNOW THAT'S JUST A SAMPLING.
THOSE ARE JUST KIND OF PIECES OF
OVERALL SOCIAL CONNECTION.
IT'S SO DYNAMIC AND SO
MULTI-FACETED, BUT THOSE ARE THE
AREAS THAT ARE MOST ASSOCIATED
WITH HEALTH OUTCOMES.
SO WE GO RIGHT TO THOSE AND HAVE
A SET OF RECOMMENDATIONS.
>> THANK YOU.
ARE THOSE AVAILABLE ON THE
SURGEON GENERAL'S WEBSITE?
>> THEY ARE NOT CURRENTLY, BUT I
WILL BE HAPPY TO SHARE THEM.
FEEL FREE TO REACH OUT.
WE HAVEN'T PUBLICIZED THAT AT
THIS STAGE BUT WOULD BE HAPPY TO
SHARE.
>> SURE, WONDERFUL.
THANK YOU SO MUCH.
SUCH EXCITING WORK.
ARE THERE ANY OTHER QUESTIONS?
OH, PHILIP, YES, I SEE YOU.
THANK YOU.
>> FOR SOME REASON I'M CLAPPING
AND RAISING AT THE SAME TIME.
SO, I WAS CURIOUS, THIS IS MORE
FROM A PERSONAL STORY, HOW DO
THESE RECOMMENDATIONS TURN INTO
FUNDING?
BECAUSE I'M REALLY THINKING
ABOUT SOME OF MY ELDERS IN THE
FAMILY WHO ARE JUST KIND OF
SITTING AT HOME, BECAUSE OF THE
LACK OF SENIOR CENTERS, YOU
KNOW, JUST THE ABILITY TO HAVE A
BUS PICK THEM UP AND BRING THEM
TO SENIOR CENTER FOR A FEW HOURS
AND THEN BRING THEM BACK HOME.
SO HOW DOES THIS I GUESS TURN
INTO -- I GUESS THIS WOULD BE UP
TO LEGISLATURES TO HAVE A
STATEWIDE FUNDING AND MAKE ITS
WAY LOCALLY AND MAYBE TO
NON-PROFITS AND THINGS LIKE THAT
BUT IS THERE A MECHANISM IN
WHICH THESE RECOMMENDATIONS TURN
INTO KIND OF AN ACTION ITEM AND
MORE PROGRAMS FOR SOCIALIZATION?
>> YES, I WISH I HAD A QUICK
ANSWER FOR THAT.
AND I THINK IT'S DIFFERENT.
I THINK YOU'RE RIGHT, A LOT OF
THIS IS LOCAL LEVEL.
I'M SURE THE FEDERAL GOVERNMENT
HAS THE ABILITY TO DO SOME OF
THIS, AND HELP TO -- YOU KNOW,
HELP TO ENCOURAGE THIS.
I'LL SAY THAT DOT DOES HAVE SOME
PROGRAMS, I CAN CONNECT YOU IF
YOU'RE CURIOUS, THEY HAVE A FEW
PROGRAMS THAT ARE REALLY GREAT
FOR CONNECTING SENIORS.
NONE OF US IS GOING TO DO THE
WHOLE JOB.
THAT'S WHY WE THINK OF THIS AS I
SAID KIND OF SOCIETY-WIDE
BECAUSE EVERYTHING IS JUST GOING
TO GET AT ONE PIECE OF WHAT IS
NEEDED.
AND MAYBE EVEN JUST ONE PIECE
FOR ONE POPULATION, SO NONE OF
THIS THAT I'M ABOUT TO SAY IS
MEANT TO BE A HOLISTIC ANSWER,
BUT THERE ARE SOME BRIGHT SPOTS
AND SOME ENCOURAGING AREAS WHERE
FUNDING IS BEING USED FOR THIS
SPECIFIC PURPOSE.
DOT HAS SOME ITEMS.
USDA HAS SOME PROGRAMS THAT USE
FUNDING NOT JUST TO PROVIDE
HEALTHY FOOD BUT TO CREATE
CONNECTION AROUND THAT FOOD.
IT MIGHT BE, YOU KNOW, COMMUNITY
GARDENS AND OTHER PROGRAMS, SO
THERE ARE AREAS THAT ARE FOCUSED
ON THIS AND ARE PROVIDING
FUNDING, BUT OVERALL I MEANING
IT'S QUITE LOCAL, AND JUST SORT
OF NEEDS TO BE PRIORITIZED.
I THINK, YOU KNOW, CITIES AND
TOWNS AND STATE GOVERNMENTS NEED
TO SORT OF START BY MAKING THIS
A PRIORITY AND THEN EVEN WITHOUT
ADDITIONAL FUNDING, YOU KNOW,
ONE OF THE ITEMS IN OUR
ADVISORY, THERE'S A LOT THAT BE
DONE WITH EXISTING FUNDING AND
PROGRAMS THAT COULD BE TWEAKED
AND REORIENTED TO ENHANCE THE
SOCIAL CONNECTION THAT CAN YIELD
FROM THOSE THINGS.
SO, YOU KNOW, EXISTING
STRUCTURE.
SO, AGAIN, NOT A SATISFYING
ANSWER BUT HOPEFULLY WE'LL HAVE
A LOT OF EXPERIMENTATION AS THIS
BECOMES MORE OF A PRIORITY WE'LL
SEE MORE OF THAT.
BUT I DO HAVE SOME EXAMPLES IF
YOU WANT TO CONNECT AFTER, I CAN
SHARE.
>> WONDERFUL.
THANK YOU.
ANY OTHER COMMENTS OR QUESTIONS?
OKAY.
WELL, WE'LL GO AHEAD AND MOVE
FORWARD.
I'D LIKE TO THANK YOU FOR YOUR
OUTSTANDING PRESENTATIONS, I'D
ALSO LIKE TO THANK DR. MURTHY
AND THE ENTIRE OFFICE FOR YOUR
INCREDIBLE WORK ON BEHALF OF THE
HEALTH OF OUR NATION.
THANK YOU VERY MUCH.
AND WE WILL NOW BE MOVING INTO
OUR NEXT AGENDA ITEM WHICH IS
APPROVAL OF THE SEPTEMBER 12 AND
13, 2023 MINUTES.
WOULD ANYONE LIKE TO MAKE A
MOTION?
>> MOVE TO ACCEPT THE MINUTES.
>> THANK YOU, JIM HAS MOVED.
IS THERE A SECOND?
>> SECOND.
>> THANK YOU.
I SAW PHILIP'S HAND BUT HEARD
MITCH.
SO, THANK YOU.
SO, THE APPROVAL OF SEPTEMBER 12
AND 13, 2023 MINUTES PASSES.
AND IT'S NOW TIME FOR APPROVAL
OF FUTURE MEETING DATES.
YOU CAN SEE THAT ON THE AGENDA.
IS THERE DISCUSSION ON THIS
ITEM?
OKAY.
SEEING NONE, THE NLM BOARD OF
REGENTS 2026 WINTER MEETING WILL
BE HELD ON FEBRUARY 10, 2026.
NO VOTE IS NEEDED ON THIS.
DO REACH OUT IF YOU HAVE ANY
QUESTIONS ABOUT THAT DATE.
YOU'LL SEE OTHER DATES OF NOTE
CLOG MLA, WHICH IS BEING HELD IN
MAY, AAMC MEETING IN ATLANTA,
AND BOTH AMIA MEETINGS WHICH ARE
BEING HELD, THIS IS THE MAIN
MEETING 2024 IN SAN FRANCISCO,
25 MEETING IN ATLANTA.
OKAY.
THANK YOU VERY MUCH.
SO MOVING RIGHT ALONG ON THE
AGENDA I WOULD NOW LIKE TO
WELCOME DR. STEVE SHERRY TO GIVE
THE REPORT FROM ACTING NATIONAL
LIBRARY OF MEDICINE DIRECTOR.
THANK YOU.
>> HELLO, EVERYONE.
FIRST AND FOREMOST I WANT TO
WELCOME EVERYONE TO THE NLM
BOARD OF REGENTS MEETING.
IT IS A DELIGHT TO SEE YOU
VIRTUALLY.
THIS IS A VIRTUAL MEETING AS
WILL BE THE ONE IN MAY.
WE'LL MET AGAIN IN PERSON IN THE
FALL.
THERE WE GO.
SO I'M PROUD TO SERVE AS ACTING
DIRECTOR OF NLM, EVEN PROUDER OF
THE TEAM AROUND ME WHO GATHERED
HERE TODAY IN THE CONFERENCE
CENTER IN BUILDING 38A.
TOGETHER WE'RE COMMITTED TO THE
FUTURE OF NLM AND CONTINUING ITS
INCREDIBLE WORK.
WHILE I PRESENT TO YOU TODAY, I
KNOW I DON'T LEAD ALONE, IT'S
WITH THIS SMART AND CAPABLE TIME
THAT NLM DOES ITS GREAT WORK
UNCOVERING INNOVATIVE
APPROACHES, CONDUCTING
BREAKTHROUGH RESEARCH, MAKING
RESOURCES AVAILABLE TO EVERYONE.
NLM HAS EXPERIENCED SOME
TRANSITIONS IN RECENT MONTHS,
I'M EXCITED TO INTRODUCE A FEW
NEW LEADERS TO YOU TODAY AS WELL
AS HONOR THOSE WHO LEFT NLM
SINCE WE LAST MET.
FIRST, THIS IS THE FIRST BOARD
OF REGENTS IN MANY MEETINGS
WITHOUT PATTI BRENNAN, WE WISH
HER THE VERY BEST IN HER
RETIREMENT.
ALSO OLIVIER BODENREIDER, WHO
RETIRED AFTER MANY YEARS OF
OUTSTANDING SERVICE TO NLM.
WE REMAIN GRATEFUL FOR ALL THAT
HE DID TO ADVANCE RESEARCH AT
NLM AND DRIVE THE OVERALL
MISSION.
WE HAVE THREE NEW MEMBERS THAT
JOINED OUR LEADERSHIP TEAM.
FIRST IS THE LISTER HILL CENTER
ACTING DIRECTOR, MASTER OF
SCIENCE JOHNS HOPKINS
UNIVERSITY, BRINGS MORE THAN 26
YEARS OF EXPERIENCE AT NLM TO
THE TABLE, INCLUDING HAVING
SERVED AS ACTING CHIEF OF THE
APPLIED CLINICAL INFORMATICS
BRANCH.
WE'RE GRATEFUL TO SEE JIM STEP
UP TO THIS ROLE.
WE'RE LUCKY TO WELCOME BACK TO
NLM DR. DINA PALTOO, WHERE SHE
WAS ASSISTANT DIRECTOR FOR
POLICY DEVELOPMENT.
DR. PALTOO HAS COME ON DETAIL
FROM NHLBI, HEART, LUNG AND
BLOOD INSTITUTE HERE AT NIH,
WHERE SHE WAS IN THE IMMEDIATE
OFFICE OF THE DIRECTOR, ROLE OF
ASSISTANT DIRECTOR OF SCIENTIFIC
STRATEGY AND INNOVATION.
RECEIVED HER BACHELOR'S IN
MICROBIOLOGY, Ph.D. FROM
HOWARD, MASTERS FROM JOHNS
HOPKINS BLOOMBERG SCHOOL OF
PUBLIC HEALTH, LOOK FORWARD TO
HER HEALTH IMPLEMENTING POLICY
FRAMEWORK AND OVERSEEING NLM
RELATIONSHIPS ACROSS NIH WITH
EXTERNAL GROUPS.
SHE WILL WORK ASIDE MIKE HERDA.
LASTLY DR. KIM PRUITT APPOINTED
ACTING DIRECTOR OF NCBI, A LONG
TENURED MEMBER OF NLM WITH 26
YEARS OF SERVICE HERE, KIM
RECEIVED A Ph.D. IN GENETICS
AND DEVELOPMENT FROM CORNELL
UNIVERSITY, COMPLETED
POSTDOCTORAL STUDIES AS PART OF
NCBI AT NLM, MOST RECENTLY CHIEF
OF THE INFORMATION ENGINEERING
BRANCH WITHIN NCBI, PLAYED A
LEADING ROLE.
PLEASE JOIN ME IN WELCOMING ALL
THREE OUTSTANDING LEADERS TO OUR
TEAM.
NEXT IT'S EXCITING TO SHARE
INCREDIBLE EXPERTISE AND
ACCOMPLISHMENTS OF STAFF WITH
YOU HERE TODAY.
THROUGHOUT THE YEAR THE OFFICE
OF COMMUNICATIONS AND PUBLIC
LIAISON IS TASKED WITH SHARING
ACCOMPLISHMENTS WITH THE PUBLIC.
ONE OF THE WAYS THEY DO SO IS
WITH VIDEOS FEATURING NOVEL
SCIENTIFIC ADVANCES THAT NLM
MAKES POSSIBLE.
LET'S WATCH ONE NOW.
THIS FEATURES THE WORK OF THE
TEAM AS THEY UNRAVEL A
LONGSTANDING MYSTERY OF HUMAN
BIOLOGY.
♪
>> ONE FUNCTION, HUMAN
PHYSIOLOGY ...
>> THANK YOU.
CONGRATULATIONS TO THE TEAM FOR
THESE INSIGHTFUL FINDINGS AND
MARVELOUS PRODUCTION BY OUR
COMMUNICATIONS OFFICE,
HIGHLIGHTS JUST HOW NLM CAN HELP
FOSTER DIVERSITY AND DISCOVERY
IN EXPLODING GENOMIC
OPPORTUNITIES AROUND MICROBIOME
AND METAGENOMES THAT ARE VERY
MUCH CONNECTED TO HUMAN HEALTH
AND DISEASE.
NOW, I'D LIKE TO PIVOT AND ALSO
REMARK THAT IN RECENT CHANGES
DR. MONICA BERTAGNOLLI WAS
RECENTLY APPOINTED AS 17th
DIRECTOR OF NIH.
OOPS.
THERE WE GO.
THANK YOU.
DR. BERTAGNOLLI HAS A VISION FOR
NIH, IT'S A POWERFUL ONE, AND
PLACES NLM IN THE CENTER OF THE
ACTION.
SHE SAYS THAT OUR WORK IS NOT
FINISHED WHEN WE JUST DELIVER
SCIENTIFIC DISCOVERIES.
OUR WORK AT NIH IS FINISHED WHEN
ALL PEOPLE ARE LIVING LONG AND
HELDY LIVES.
NIH IS THE LABORATORY, CLINIC,
COMMUNITY.
WE HAVE TO RECOGNIZE PATIENTS
ARE PATTERS IN IN -- PARTNERS IN
DISCOVERY AND BENEFITS HAVE TO
FLOW TO THEM.
THE TACKLE THE COMPLEX PROBLEMS,
NIH AIMS TO BRING MORE MEMBERS
OF THE PUBLIC INTO RESEARCH
ENTERPRISE AS PARTNERS IN THE
DISCOVERY PROCESS.
INCOME, AGE, RACE, ETHNICITY,
GEOGRAPHIC LOCATION AND THINGS
LIKE DISABILITY STATUS SHOULD
NOT BE BARRIERS TO PARTICIPATING
IN RESEARCH OR BENEFITING FROM
RESEARCH ADVANCES.
SHE GOES ON TO SAY IN HER VISION
THAT PROGRESS IS ACCELERATED
WHEN ADVANCED SCIENTIFIC METHODS
SUCH AS NEW DATA ANALYTICS
APPLY TO EVERYONE, DATASETS NEED
TO BE INCLUSIVE, AND NEED TO BE
ADAPTED IN RURAL AND URBAN
SETTINGS.
NIH IS COMMITTED TO HARNESSING
POWER OF ARTIFICIAL INTELLIGENCE
AND MACHINE LEARNING ACROSS
COMMUNITIES.
AND SPECIFICALLY, ADVANCED
SCIENTIFIC METHODS, NEW
TECHNOLOGIES ARE UNLOCKING
POSSIBILITIES TO HARNESS DATA IN
WAYS THAT ACHIEVE MORE
DEFINITIVE RESULTS, LIKE THE
VIDEO, WE'RE NOW CONNECTING GUT
METABOLISM TO BILIRUBIN LEVELS
AND IBD AND A LOT OF ADULT ONSET
DISORDERS.
NIH HAS LAUNCHED AND WILL
CONTINUE TO LAUNCH INNOVATIVE
AND AMBITIOUS INITIATIVES TO
PROPEL FUSION OF BIOMEDICINE AND
AL/ML, TO REIMAGINE THE LIBRARY
FOR THE 21ST CENTURY CURES AS A
CORNERSTONE INSTITUTION
LEVERAGING AND ORGANIZING THIS
DATA.
HER VISION IS ASKING NLM TO
DEVELOP STRATEGIES, FOUR HERE,
TO INTEGRATE DATA FROM BASIC AND
SOCIAL SCIENCE RESEARCH, PUBLIC
HEALTH AND CLIP CAL -- CLINICAL
CARE, INCREASE FAST CAPACITY FOR
DATA HOSTING.
THIRD, EMPLOY FEDERATED
ARCHITECTURE TO CONNECT WITH THE
BROADER COMMUNITY SO THERE'S AN
INTEGRATED ECOSYSTEM OF DATA AND
THE NLM BECOMES A CATALOG WHERE
ONE CAN DISCOVER DATA AND BUILD
A RICH TRAINING DATASET TO MAKE
A NEW A.I. MODEL.
FINALLY THE LIBRARY IS
CHALLENGED TO PROVIDE EDUCATION
AND HELP IN WORKFORCE
DEVELOPMENT SO WE HAVE THE NEXT
GENERATION OF SCIENTISTS TRAINED
AND CAN PARTICIPATE IN THIS
KNOWLEDGE ECONOMY.
AGAIN, NOT JUST FROM URBAN
SETTINGS BUT ACROSS ALL OF
AMERICA, ALL TRIBES AND
TERRITORIES, THERE'S AN
OPPORTUNITY HERE TO BRING
EVERYONE INTO THE ARTIFICIAL
INTELLIGENCE WORKFORCE.
SO DR. BERTAGNOLLI'S VISION
DOVETAILS NICELY WITH THE THREE
PILLARS OF THE CURRENT NLM
STRATEGIC PLAN.
AGAIN, THESE ARE TO ACCELERATE
DISCOVERY AND ADVANCE HEALTH, TO
REACH MORE PEOPLE THROUGH MORE
WAYS, TO BUILD A WORKFORCE FOR
DATA-DRIVEN RESEARCH AND HEALTH.
RECENT ACCOMPLISH THES SHOWCASE
NLM'S CAPACITY RIGHT NOW TO
DISCOVER, TO LEAD, TO EMPOWER
THE COMMUNITY.
FOR RESEARCH, FOR EXAMPLE, OUR
INTRAMURAL RESEARCH PROGRAM IRP
SINCE WE LAST MET HAS PUBLISHED
131 PEER REVIEWED PAPERS AND 29
PRE-PRINTS IN 2023.
MULTIPLE PUBLICATIONS LIKE THE
VIDEO WE JUST SAW ARE IN TOP
TIER JOURNALS INCLUDING NATURE,
BIOINFORMATICS, NATURE
COMMUNICATIONS, JOURNAL OF
AMERICAN MEDICAL INFORMATICS
ASSOCIATION.
WE HAVE A TRAINING PROGRAM
WITHIN OUR IRP THAT HAS HOSTED
91 TRAINEES IN 2023 INCLUDING
POSTDOCTORAL FELLOWS, GRADUATE
STUDENTS, POST BACK, STUDENTS,
MEDICAL RESIDENTS, INTERNS, DATA
SCIENCE AND INFORMATICS SCHOLARS
RECEIVING AWARDS AND THAT SPEAKS
WELL TO THE CAPACITY AND
EXCELLENCE FOR TRAINING PROGRAM.
ON THE EXTRAMURAL SIDE
ADMINISTRATION TO NIH COMMON
FUND HIGH RISK, HIGH REWARD
GRANT APPLICATIONS.
AGAIN THESE HIGHLIGHT SOME
NOVELTY THAT WE'RE TRYING TO
DEVELOP AND FOSTER IN OUR
EXTRAMURAL PROGRAM.
FIRST TO KEVIN JOHNSON, THE
GRANT PROPOSAL AIMS TO ADDRESS
SIGNIFICANT TIME BURDEN IN
CLINICAL -- CLINICIAN BURNOUT
ASSOCIATED WITH CLINICAL AND
COUNTER DOCUMENTATION BY
DEVELOPING INNOVATIVE AUTOMATED
DOCUMENTATION ALGORITHMS THAT
CREATE CONCISE AND COUNTER
SUMMARIES IN REAL TIME.
AND DR. MAHDI IS PIONEERING
DEVELOPMENT OF DEEP
LEARNING-BASED ARCHITECTURES
AND TRAINING MECHANISMS TO
ADDRESS ADOPTION OF
RECONSTRUCTION, PARTICULARLY IN
MUSCULOSKELETAL IMAGING,
BRACHIAL PLEXUS DIAGNOSTIC
REALM, EXCITING OPPORTUNITIES
THAT ARE GOING TO HELP SHAPE
BEHAVIOR OF CLINICAL PRACTICE
AND ACCELERATE PRECISION OF
IMAGING AND TOOLS IN CLINICAL
CARE.
IN THE SECOND AIM, WE HAVE
COMMITMENTS REACHING PEOPLE IN
MORE WAYS THROUGH DISSEMINATION.
HERE ARE FOUR EXAMPLES RECENTLY
RELEASED.
FIRST IS LISTER HILL CENTER
MALARIA SCREENER PROJECT, WHICH
CAN EVALUATE BLOOD SMEARS IN A
REAL WORD TESTAMENT, GREAT
POTENTIAL FOR MAKING SCREENING
MORE EFFICIENT, AS OF DECEMBER
THAT SOFTWARE HAS BEEN
DOWNLOADED ALMOST 3,000 TIMES IN
39 COUNTRIES, ACTUALLY DOING
BLOOD SMEAR ANALYSIS LOOKING FOR
PAR SIDE LOADS, LEVEL 1
PRECISION WITH IMAGING
ENHANCEMENTS, SECOND, THIS IS AN
INTERACTIVE MAP THAT SHOWS THE
DISTRIBUTION OF ANTIMICROBIAL
RESISTANCE STRESS RESPONSE IN
VIRULENCE GENES AND ISOLATES
ACROSS THE WORLD, IN THE CONTEXT
OF EMERGING ANTIMICROBIAL
THREATS.
THE FCS-GX ALGORITHM HAS BEEN
DEVELOPED AS PART OF NIH CGR,
NOW IN DEVELOPMENT.
IN GALAXY FOR FAIR DATA
ANALYSIS, ANYONE CAN SCREEN
GENOMES PRIOR TO SUBMISSION TO
GENERAL BANK, CONTAMINATION
SCREENING IS THE CORE OF QUALITY
IN THAT WHEN YOU HAVE A SEQUENCE
SUBMITTING FOR AN ORGANISM IT'S
IMPORTANT DATA COMES FROM THAT
ORGANISM AND NOT CONTAMINATION.
KUDOS TO THEM, THE FACT THIS IS
IN GALAXY IS EXCITING, A BROADLY
USED PLATFORM SHOWING
INTERCONNECTION TO POPULAR TOOLS
AND SERVICES.
ClinVar SUPPORTS SOMATIC
VARIATION DATA, IN ADDITION TO
GERMLINE VARIATION DATA FOR
YEARS.
THIS WILL BE, FOR EXAMPLE, DATA
ASSOCIATED WITH CANCER GENOMES,
A POWERFUL SUPPLEMENT TO
UNDERSTANDING AND
CONTEXTUALIZING RISKS OF
VARIANTS IN SOMATIC CELLS AND
GERMLINE INHERITANCE.
THE OTHER THINGS FOR ENGAGEMENT
DISSEMINATION, TO NOTE THE NLM'S
OPEN SCIENCE COORDINATION GROUP
IS DEVELOPING A LIST OF PRIORITY
ACTIONS THAT ARE GOING TO BUILD
ON THE SUCCESS OF THE 2023 YEAR
OF OPEN SCIENCE.
IT WAS A GREAT YEAR.
THIS MOMENTUM IS BEING CARRIED
ON BY PARTICIPATING AND
PROMOTING WHITE HOUSE OFFICE OF
SCIENCE AND TECHNOLOGY POLICIES
YEAR OF OPEN SCIENCE RECOGNITION
CHALLENGE.
AND FINALLY THE DATA HEALTH
STANDARDS TEAM, I'M SORRY,
HEALTH DATA STANDARDS TEAM
RELEASED A NEW API ENDPOINT FOR
NLM RELEASE, PROVIDING UPDATED
LIST OF RELEASES FOR RxNORM,
SNOMED-CT AND UMLS.
I MENTIONED THE ECOSYSTEM THAT
WE'RE TRYING TO ESTABLISH THAT
WILL CONNECT AND CATALOG REMOTE
DATASETS IN ADDITION TO WHAT WE
HOLD IN OUR COLLECTION.
FIRST TEST IS BETA RELEASE OF
THE DATASET CATALOG.
THIS IS FREELY AVAILABLE CATALOG
OF BIOMEDICAL DATASETS AVAILABLE
FROM VARIOUS REPOSITORIES
DESIGNED TO HELP BIOMEDICAL
RESEARCHERS, MEDICAL LIBRARIANS,
NIH GRANTEES AND THE PUBLIC TO
DISCOVER BIOMEDICAL DATASETS
USING STANDARDIZED METADATA.
DATASET CATALOG IS INTERFACE TO
LEVERAGE DATASET METADATA MODEL,
DATMM, A METADATA SCHEMA THAT
PROVIDES BASIC COMMON MODEL FOR
DESCRIBING BIOMEDICAL DATASETS
AND REPOSITORIES, THAT WILL BE
FOUNDATIONAL TO GET RIGHT, TO
MAKE SURE IT'S COMPLETE AND
SUFFICIENT THAT YOU CAN, THROUGH
IT, AUTOMATICALLY BUILD --
REQUEST SYSTEMS TO GATHER DATA
REMOTELY AND ASSEMBLE FOR
CONSOLIDATED COMPUTING TASKS.
IT WILL BE -- I THINK A
SIX-MONTH PILOT IS GOING TO HAVE
SOME FEEDBACK, I ENCOURAGE USERS
TO LOOK AND OFFER FEEDBACK ON
ITS UTILITY OR IDEAS FOR
IMPROVEMENT.
LITERATURE GROUP HAS ADDED OVER
14,000 PRE-PRINTS TO PubMed
IN PHASE 2 OF THE PRE-PRINT
PILOT LAST YEAR, ACCELERATING
ACCESS TO NIH-FUNDED RESEARCH
THROUGH PROVISIONAL OR
PRELIMINARY ANALYSIS OF
PRE-PRINTS OF MANUSCRIPTS.
THE PubMed AND INDEX SECTION
MTIX NEXT GENERATION OF
AUTOMATED MeSH INDEXING, A
MACHINE LEARNING ALGORITHM AP
TRIED TO CITATIONS AT THE TIME
OF LOADING TO PubMed
DATABASE, THIS DECREASES TIME
FOR MESH INDEXING, ENABLES NLM
TO SCALE MeSH INDEXING TO
VOLUME OF THE PUBLISHED
BIOMEDICAL LITERATURE KEEPING
THAT INDEXING CURRENT.
THE THIRD AIM WHICH IS OUR ARM
OF THE STRATEGIC PLAN, BUILDING
THIS WORKFORCE WITH DATA-DRIVEN
RESEARCH AND HEALTH, A COUPLE
ITEMS TO NOTE.
FIRST ON THE INTERNAL WORKFORCE
OF NIH FELLOWS, I THINK IT'S
NOTABLE TO MENTION THAT ON
DECEMBER 7 OF LAST YEAR,
MAJORITY OF THE VOTING NIH
FELLOWS UNITED VOTED TO BE
REPRESENTED BY THE INTERNATIONAL
UNION OF AUTOMOBILE AEROSPACE
AND AGRICULTURAL IMPLEMENT
WORKERS OF AMERICA.
U.A.W. UNION.
THE FEDERAL LABOR RELATIONS
SHORT, FLRA, CERTIFIED THE
BARGAINING UNIT ON DECEMBER 15,
2023.
AND THIS U.A.W. UNIT WILL COVER
APPROXIMATELY 5,000 FELLOWS
ACROSS THE NIH, INCLUDING
FELLOWS HERE AT NLM.
NIH IS LOOKING FORWARD TO
PARTNERING WITH THE U.A.W. TO
NEGOTIATE A HISTORIC COLLECTIVE
BARGAINING AGREEMENT FOR THE
PARTIES, TO MY KNOWLEDGE THIS IS
THE FIRST TIME OUR TRAINEE OR
FELLOWS HAVE BEEN UNIONIZED AND
REPRESENTED BY UNION.
COLLECTIVE BARGAINING WILL BE
ONGOING THROUGHOUT 2024.
MORE TO COME AS THIS PROCESS
EMERGES.
ANOTHER STEP THAT NLM IS TAKING
AROUND WORKFORCE DEVELOP.
IS RECOGNIZING THAT A.I. IS AN
IMPORTANT NEW FACET IN THE REALM
OF WORKFORCE DEVELOPMENT.
NLM IS BUILDING A.I. EXPERTISE
IN ALL DIVISIONS THROUGH PILOT
PROGRAMS.
WE KICKED OFF A GENERATIVE A.I.
PILOT WITH TEN USE CASES
RECENTLY.
AND THIS IS ACROSS NLM, USING
MICROSOFT OPEN A.I. AND AZURE
SAFE PLAYGROUND, SO WE HAVE A
FIRE WALL SPACE TO DO A.I.
DEVELOPMENT EXPERIMENTSES THAT
ARE SAFELY GROUND AND ISOLATED
FROM PUBLIC ACCESS, STAFF ARE
GAINING NEW KNOWLEDGE,
COLLABORATING ACROSS NLM AND
NIH, PRACTICAL USING OF MODELS,
ALSO COMMUNITY OF PRACTICE BEING
STOOD UP ACROSS NIH AND DIANNE
BABSKI IS ONE OF OUR DIVISION
LEADS HERE, LEADING THAT EFFORT
ALONG WITH NICK WEBER AT CIT.
OVER THE PAST FEW MONTHS THEY
HAVE EXPERIMENTED WITH NEW
TOOLS, IN THE PROCESS OF
DEVELOPING PROOF-OF-CONCEPT THAT
APPLIES TO THEIR USE CASES.
NEXT STAGE IS MEASURING RESULTS,
AND USING THE NIST FRAMEWORK FOR
MITIGATION AND ASSESSMENT.
THIS IS A BROOD RANGE OF
ACTIVITIES THAT COVER ALMOST 90
TO 100% OF THE NLM ACTIVITIES.
SO I THINK THIS IS REALLY TRYING
TO EXERCISE A.I. DEVELOPMENT IN
ALL REALM OF THE PORTFOLIO AND
PROGRAMS.
ANOTHER INVESTMENT IS HOST A
VISIT-A-THON, STORY TELLING WITH
DATA.
OVER THREE DAYS IN OCTOBER NLM
HELD A SECOND AT THE NATCHER
CENTER.
MANDATE WAS TO EXPLORE
HARNESSING OF DATA VISUALIZATION
TO UNCOVER INSIGHTS ABOUT
LIBRARY HOLDINGS.
THE FOUR TEAMS ADDRESS AND
DEVELOPED VISUALIZATIONS IN FOUR
DOMAINS, ANALYSIS OF PRE-PRINT
PILOT RESULTS, EVALUATION OF
CROWD SOURCE DATA FROM
DEVELOPING DATABASE INCLUDING
GENOMIC, GEOGRAPHIC, HISTORICAL
DATA, THE LEATHERS IN BOOK
BINDING, EVALUATION OF USAGE
TRENDS AND ACTIONABILITY OF
CUSTOMER EXPERIENCE DATA
GATHERED FROM NLM DIGITAL
PRODUCTS.
INSIGHTS REVEALING VALUE TO THE
COMMUNITY ACCESS, NATURE AND
INVENTORY AND PRESERVABILITY OF
BECOME BINDING MATERIALS,
BENCHMARKS FOR READING ROOM USE
AND TRENDS IN USER SATISFACTION.
I'D LIKE TO MAKE A FEW REMARKS
ABOUT THE BUDGET.
FIRST, WE REMAIN HOPEFUL THAT
THE BUDGET WILL NOT BE SUBJECT
TO DRASTIC CUTS.
YOU KNOW, EVEN IN A FLAT BUDGET,
WHAT WE'RE LOOKING AT, THERE
WILL BE SIGNIFICANT IMPACTS FOR
NLM WHICH I'D LIKE TO MAKE SURE
WE ALL RECOGNIZE.
FIRST, THAT AT FLAT BUDGET,
THERE'S GOING TO BE FUNDING
OPPORTUNITIES AND GRANT
PROPOSALS WE CANNOT FUND,
INNOVATION OPPORTUNITIES WE
CANNOT PURSUE, SOME GREAT IDEAS
AND POTENTIAL FOR DISCOVERIES
ARE LOST BECAUSE OF LACK OF
RESOURCES.
THERE'S A CONCERN THE NIH LEVEL
THAT WE COULD LOSE A GENERATION
OF EARLY CAREER INVESTIGATORS
WHEN PAYLINES FALL TOO LOW, AND
PEOPLE WILL LEAVE ACADEMIA AND
GO INTO INDUSTRY.
AND FINALLY, OUR INTRAMURAL
RESEARCH PROGRAM IS PARTICULARLY
SENSITIVE TO BUDGET CUTS, MOST
OF THE EXPENSES, FIXED PERSONNEL
COSTS AND IRP INVESTIGATORS HAVE
RESTRICTED ABILITY TO SEEK
ADDITIONAL FUNDING TO
COMPENSATE, SO INTRAMURAL
PROGRAM IS CONSTRAINED.
SO JUST AS WE LOOK AT THIS YEAR
PARTNERSHIPS WITH STAKEHOLDERS
ARE CRUCIAL, LOOKING FOR WAYS TO
ADVANCE THE MISSION AND BRING
RELEVANT PARTIES TOGETHER,
ACADEMIC AND NON-PROFITS AND
OTHERS EXTERNAL, ALIGNED WITH
OUR MISSION.
SO, AROUND THE APPROPRIATIONS
ITSELF, JUST TO STATE WHAT I
THINK IS STILL IN THE NEWS,
THERE'S NO FINAL BUDGET FOR NIH
OR NLM YET FOR FISCAL YEAR 24.
WE'RE CURRENTLY OPERATING UNDER
THE THIRD CONTINUING RESOLUTION,
THIS IS GOING TO END ON MARCH 8.
AT THIS POINT THE FINAL
APPROPRIATION FOR NLM BUDGET IS
STILL TO BE DETERMINED.
BUT WHAT WE'RE EXPECTING WOULD
BE FLAT FOR 23, MOST INSTITUTES
AT NIH ARE PREPARING FOR
LIKELIHOOD OF TIGHT FUNDING IN
THIS FY 24 BUDGET AS I SAID A
SECOND AREA.
JUST A SHOW THE HISTORY OF NLM,
$498 MILLION IS OUR EXPECTATION.
AGAIN WE'RE UNDER A C.R.
WE DON'T KNOW THE FINAL NUMBER
YET.
OUR EXPECT IS THE SAME, 498.
THE PROCESS AND ACTIVITIES FOR
THE PRESIDENT'S BUDGET
SUBMISSION FOR 25 IS STILL
ONGOING.
AND AT THIS POINT THERE ARE NO
BUDGET FIGURES AVAILABLE
PUBLICLY.
SO GIVEN ALL OF THE BUDGET
PLANNING AND CONSTRAINTS I JUST
TALKED ABOUT, I WANT TO REMIND
THE BOARD AND MEMBERS LISTENING
THE BUDGET PLANNING FOR THIS
YEAR BEGAN LAST YEAR WHEN WE
STARTED TO UNDERSTAND WHAT THIS
YEAR WAS GOING TO LOOK LIKE.
OUR TEAM ESTABLISHED GUIDING
PRINCIPLES MOVING INTO THIS
YEAR.
THESE I'M JUST SHARING THEM, TO
COLLECT, CURATE, PRESERVE
BIOMEDICAL INFORMATION AND
CONNECT IT TO THE WORLD.
WE WANT TO PROVIDE CREDIBLE
ACCESSIBLE INFORMATION RESOURCES
AT SCALE TO ADVANCE RESEARCH AND
HEALTH.
CONDUCT AND SUPPORT
TRANSFORMATIVE RESEARCH THAT
ADVANCES INFORMATION AND LIBRARY
SCIENCE, ENGINEERING, AND
TECHNOLOGY.
FINALLY LEAD EXCELLENCE FOR
RESILIENCE, RELIABILITY,
REPRESENTATION FOR ALL
INFORMATION SCIENCE.
FROM THESE GUIDING PRINCIPLES WE
HAVE IDENTIFIED FIVE PRIORITY
AREAS WE COULD TRY TO PRESERVE
IN 2024 WITH RESOURCES WE HAVE.
WE WANT TO DEVELOP INTENTIONAL
STRATEGIES FOR DEVELOPING OUR
UNIFIED COLLECTION.
WE WANT TO ACCESS NLM -- ENSURE
ACCESS TO OUR COLLECTIONS, NLM'S
CONNECTIONS, WHILE PROTECTING
RIGHTS OF USERS AND
CONTRIBUTORS.
WE WANT TO SUPPORT EARLY CAREER
RESEARCHERS.
SUPPORT HIGH VALUE TECHNICAL
INFRASTRUCTURE THAT EMBRACES THE
FUTURE.
ENSURE THAT OUR DECISIONS ARE
DRIVEN BY DATA.
WE CONTINUE TO APPLY THESE
PRIORITIES AS WE PLAN AND
EXECUTE OUR 2024 BUDGET.
WE'VE COVERED CHANGES TO
LEADERSHIP TEAM.
IT TAKES MANY MORE KEY STAFF TO
RUN THE WORLD'S LARGEST
BIOMEDICAL LIBRARY.
SINCE THE LAST BOARD MEETING NLM
SAW A COUPLE RETIREMENTS AND
DEPARTURES, FIRST DR. TOM MADDEN
RETIRED LAST WEEK AFTER MORE
THAN 30 YEARS OF SERVICE TO NLM
AND NCBI.
SINCE 1994 TOM HAS OVERSEEN
DEVELOPMENT OF NCBI BLAST.
HIS EFFORTS SHAPED BLAST INTO
THE BUSIEST SEQUENCE SERVICE IN
THE WORLD, GOLD STANDARD FOR
STAND-ALONE SEQUENCE SIMILARITY
SEARCH TOOLS.
IMPACT HAS BEEN IMMENSE, WE'LL
MISS HIM.
JENNIFER MARILL RECENTLY RETIRED
AFTER SEARCHING AS CHIEF OF
TECHNICAL SERVICES, WITHIN THE
DIVISION OF LIBRARY OPERATIONS,
A GREAT ASSET TO DIANNE BABSKI'S
GROUP.
AND WEEP HOPE TO COLLABORATE TO
THESE TWO DOCTORS IN THE FUTURE.
WE'VE HAD THE PLEASURE OF
WELCOMING NEW TALENT TO THE NLM
TEAM CELEBRATING NEW ROLES FOR
SOME FAMILIAR FACES.
FIRST DR. DAVID LANDSMAN, HAS
BEEN NAMED ACTING BRANCH CHIEF
FOR COMPUTATIONAL BRANCH CHRB,
IN ADDITION TO CBB BRANCH CHIEF
AND SENIOR INVESTIGATOR IN IRP.
WE'VE WELCOMED DR. LUNA AS EARL
STADTMAN TENURE-TRACK
INVESTIGATOR, A DISTINGUISHED
COMPUTATIONAL BIOLOGIST RENOWNED
FOR DEVELOPING APPLICATIONS IN
THE FIELD OF CANCER RESEARCH, A
Ph.D. IN BIOINFORMATICS, LEADS
A TEAM IN INNOVATIVE APPROACHES
TO ASPECTS OF DATA SCIENCE
RESEARCH.
WE HAVE MS. ANNA RIPPLE,
MASTER'S IN LIBRARY SCIENCE,
ACTING BRANCH CHIEF OF APPLIED
CLINICAL INFORMATICS BRANCH FOR
ACIB, AND WILL PROVIDE STRATEGIC
DIRECTION FOR ACIB ACTIVITIES
IMPLEMENTING STRATEGIC VISION.
PREVIOUSLY SERVED AS INFORMATION
RESEARCH SPECIALIST, ALUMNI OF
NLM ASSOCIATE FELLOWS PROGRAM.
ALSO VICTORIA RUCKER, NOW
SERVING AS DEPUTY EXECUTIVE
OFFICER, JOINED FROM THE NIH
OFFICE OF THE DIRECTOR, WAS
DIRECTOR OF OFFICE FOR WORKFORCE
MANAGEMENT AND PROGRAMS, CHIEF
DIVERSITY OFFICER.
ADDITION IS AN EXCITING ONE, WE
LOOK FORWARD TO LEADERSHIP AND
VISION SHE WILL BRING.
PLEASE JOIN ME IN WELCOMING OUR
DISTINGUISHED NEW COLLEAGUES AND
CONGRATULATING OTHERS ON THEIR
ROLES.
NOW LET'S SHIFT GEARS TO CREATE
A CULTURE OF CONTINUOUS
INNOVATION.
FOCUS ON CONTINUOUS INNOVATION
SHOWS COMMITMENT TO PIVOT FROM
INNOVATION AS ACTIVITY OR ACTION
TO CONTINUOUS MODEL THAT
ADVANCES MISSION, TESTS
STRATEGIES AND GARNERS BUDGET
AND RESOURCES WHILE WE MOVE TO
THE FUTURE.
IN DOING SO WE CAN ENABLE THE
IMPLEMENTATION OF NEW IDEAS,
SOLUTIONS, APPROACHES WHERE
INNOVATION REMAINS AN ELEMENT TO
OUR STRATEGY AND IDENTITY, THE
COMMITMENT MEETS A TOP PRIORITY
FOR NLM LEADERSHIP TEAM.
WE CONTINUE TO MAKE PROGRESS IN
ESTABLISHING A FORWARD LOOKING
MODEL OF INVASION APPLIED ACROSS
THE NLM.
THIS PIVOTS FROM INNOVATION AS A
SEPARATE SET OF ACTIONS TO
CONTINUOUS MODEL THAT IS
INTENTIONAL, CONSISTENT,
EMBEDDED ACROSS ALL LEVELS OF
THE ORGANIZATION.
SINCE JUNE 23, WE HAVE SELECTED
KEY COMPONENTS OF INNOVATION
REQUIRED TO CREATE OUR CULTURE
OF CONTINUOUS INNOVATION, ASSESS
AGAINST EACH COMPONENT, FIND
FUTURE STATE LEADERSHIP VISION,
DEVELOP A ROADMAP.
WITH THE FIRST STEPS OF
VISIONING COMPLETE IN 2024 WE
STARTED TO BUILD EACH ASPECT OF
THE CONTINUOUS INNOVATION MODEL.
TODAY WE'VE DEFINED A SHARED
VISION FOR THE FOUR MAJOR
COMPONENTS THAT INCLUDE
GOVERNANCE, IDEA LIFE CYCLE,
DEPLOYMENT AND MEASUREMENT,
ORGANIZATIONAL READINESS, WITH
KEY ACTIVITIES CONTINUING INTO
FISCAL 25.
THIS MODEL IS INTEGRAL TO
SUCCESS OF IMPLEMENTING SUCCESS
OF FOUR MAJOR COMPONENTS I JUST
REVIEWED.
GOVERNANCE IS ESSENTIAL AS THE
NLM LEADERSHIP TEAM WORKS TO SET
STANDARDS FOR DECISION MAKING
AND BUDGET ALLOCATION,
INNOVATION INVESTMENTS.
NEEDS IDENTIFICATION, IDEA
GENERATION, BUILD AND TEST AND
DESIGN AS WE BUILD END-TO-END
PROCESS.
THE ORGANIZATIONAL READINESS AND
DEPLOYMENT MEASUREMENT WILL
DRIVE CONTINUED REINFORCEMENT OF
THE MODEL ACROSS ALL LEVELS,
SENIOR LEADERS AND SUPERVISORS
AND STAFF.
DURING THE INITIAL VISIONING OF
THE CONTINUOUS INNOVATION
PROJECT WE CAME AWAY WITH FOUR
WORK STREAMS, EACH INTEGRAL TO
OUR GOALS, GOVERNANCE, IDEA LIFE
CYCLE, DEPLOYMENT MEASUREMENT
AND OPERATIONAL READY INSIDE,
THESE WILL BE FOUR WORK GROUPS
THAT WE'RE ESTABLISHING WITHIN
NLM THIS YEAR, AND THROUGH THE
REMAINDER OF THE FISCAL YEAR WE
WILL CONTINUE TO DEVELOP AND
TEST KEY COMPONENTS WITHIN
CONTINUOUS INNOVATION MODEL.
AS WE BUILD OUT WE'LL MAKE
REFINEMENTS AS NEEDED BASED ON
RECEIVED FEEDBACK.
THIS WILL RESULT IN
PRIORITIZATION OF NEXT STEPS TO
CONTINUE OUR PURSUITS INTO FY 25
AND BEYOND.
IT'S MY PLEASURE TO TURN OVER
THE MIC TO OUR ASSISTANT
DIRECTOR FOR POLICY DEVELOPMENT,
FOR AN UPDATE.
>> THANK YOU, STEPHEN.
GOOD MORNING.
I WANTED TO SHARE SOME BRIEF
POLICY AND LEGISLATIVE UPDATES.
FIRST SEVERAL POLICY ACTIVITIES
OF INTEREST TO NLM.
LATE LAST YEAR NATIONAL
ACADEMIES HOSTED A PUBLIC
WORKSHOP TO INFORM NIH AND
DEPARTMENT AGENCIES, POLICIES TO
ENHANCE PUBLIC ACCESS TO RESULTS
OF FEDERALLY FUNDED RESEARCH.
THE WORKSHOP DISCUSSIONS WILL BE
TAKEN INTO CONSIDERATION AS NIH
DEVELOPS UPDATED POLICY WHICH
WILL BE RELEASED FOR PUBLIC
COMMENT, WE'LL LOOK TO THE BOARD
TO HELP US DISSEMINATE THE DRAFT
ONCE RELEASED.
I WANTED TO HIGHLIGHT TWO KEY
ACTIVITIES BY THE OFFICE OF
NATIONAL COORDINATOR FOR HEALTH
INFORMATION TECHNOLOGY.
FIRST ON DECEMBER 3 THEY
RELEASED THE FINAL HEALTH DATA
TECHNOLOGY AND INTEROPERABILITY,
ALGORITHM TRANSPARENCY,
INFORMATION RULE.
WHICH IMPLEMENTS VISIONS OF THE
21ST CENTURY CURES ACT AND MAKES
UPDATES TO THE CERTIFICATION.
LAST MONTH RELEASED DRAFT
VERSION OF THE VERSION 5 OF U.S.
CORE DATA FOR PUBLIC COMMENT,
INCLUDING TWO NEW DATA CLASS, 13
NEW DATA ELEMENTS.
COMMENTS DUE BY APRIL 15.
ONC PLANS TO RELEASE THE FINAL
VERSION IN JULY.
WE CONTINUE TO MONITOR POLICY
ACTIVITY FOCUSED ON ARTIFICIAL
INTELLIGENCE, YOU MAY HAVE SEEN
THAT THE WHITE HOUSE RELEASED AN
EXECUTIVE ORDER FOCUSED ON A.I.
DEVELOPMENT AND USE.
SUBSEQUENT TO THAT, EARLY
NOVEMBER, THE OFFICE OF
MANAGEMENT AND BUDGET RELEASED
FOR PUBLIC COMMENT A DRAFT
POLICY FOR FEDERAL AGENCIES USE
.
AMERICAN MEDICAL ASSOCIATION AND
SUBSEQUENTLY AMERICAN MEDICAL
INFORMATICS ASSOCIATION RELEASED
POLICY BRIEF LATE LAST MONTH.
AS I MENTIONED IN SEPTEMBER
THERE'S ALSO GREAT INTEREST IN
A.I. IN CONGRESS, THERE HAVE
BEEN SIX A.I.-FOCUSED
CONGRESSIONAL HEARINGS SINCE OUR
LAST MEETING IN SEPTEMBER ON
WORKFORCE DEVELOPMENT,
PROCUREMENT, USE OF A.I. IN
GOVERNMENT, TRANSPARENCY AND
GOVERNANCE.
IN ADDITION SEVEN NEW BILLS HAVE
BEEN INTRODUCED SINCE WE LAST
MET FOR A TOTAL OF ABOUT 20
BILLS FOCUSED ON A.I. INTRODUCED
IN CONGRESS, FOCUSED ON RELATED
TOPICS.
AND THEN AS STEVE MENTIONED
WE'RE CONTINUING TO MONITOR
FISCAL YEAR 2024 APPROPRIATION
PROCESS.
IN ADDITION TO BEING UNDER
CONTINUING RESOLUTION THROUGH
MARCH 8, THE APPROPRIATORS
ANNOUNCED AGREEMENT ON
ALLOCATIONS FOR THE 12
APPROPRIATION COMMITTEES,
DETAILS NOT YET AVAILABLE.
WE'LL CONTINUE TO KEEP AN EYE ON
THAT.
WITH THAT I'LL TURN IT BACK OVER
TO STEVE.
>> THANK YOU.
WE HAVE APPROXIMATELY 15 MINUTES
TO OPEN THE FLOOR FOR
DISCUSSION.
>> MAYBE I'LL START THE
QUESTIONS.
STEVE, SO THE ITEM ABOUT
CONTINUOUS INNOVATION, I'M
WONDERING IF YOU CAN SHARE WITH
US A LITTLE BIT ABOUT HOW THAT'S
BEING SHARED AND COMMUNICATED
ACROSS NLM.
IT'S SUCH A LARGE ORGANIZATION,
WITH A BROAD MISSION, SO MANY
GREAT PEOPLE HELPING TO MAKE
THAT A REALITY.
I'M WONDERING, HOW THAT'S BEING
COMMUNICATED AND SUPPORTED IN
DIFFERENT WAYS.
>> GREAT QUESTION.
WE'RE AT THE BEGINNING OF THAT
PROCESS, I SHOULD SAY.
WHAT WE'VE DONE SO FAR HAS BEEN
EXECUTIVE LEADERSHIP AND
PLANNING.
WE'VE IDENTIFIED THE WORK
STREAMS IN FOUR AREAS, AND MY
UNDERSTANDING IS THAT THOSE WORK
GROUPS ARE GOING TO START
BRINGING IN SENIOR LEADERS
WITHIN EACH DIVISION, AND THAT
WILL START THIS CONVERSATION.
AND AS WE WORK DOWN THE ACTUAL
COMPOSITION AND TASK ASSIGNMENTS
WITHIN EACH GROUP THEY WILL THEN
BE READ OUT TO SUPERVISORS AND
TRAINEES, I THINK THE BASIC
IDEA, KIND OF LUCY-GOOSY TERMS,
WE'RE TRYING TO CREATE INCUBATOR
FOR INNOVATION THAT ALL
DIVISIONS CAN CONTRIBUTE IDEAS
TO AND GET SOME COACHING HOW TO
PITCH THE IDEAS AND BRING THEM
UP FOR ASSESSMENT AND EVALUATION
FOR LIKELIHOOD OF SUCCESS,
IMPACT, AND VALUE TO THE
ORGANIZATION.
AND THEN THIS INNOVATION
INCUBATING SPACE WILL THEN BRING
FORWARD SUCCESSFUL PROPOSALS TO
SENIOR LEADERSHIP AND FUND IN
THE BUDGET.
THAT'S ALL THE WORK OF THE NEXT
I THINK SIX MONTHS TO PILOT
THAT THIS YEAR SO WE HAVE ALL
PARTS.
HOW DO WE SOLICIT IDEAS, MENTOR
AND DEVELOP IDEA PROPOSERS TO
HAVE STRONG APPLICATIONS, HOW DO
WE DO THE INCUBATION
ASSESSMENTS, VET IDEAS, HOW DO
WE BRING THEM FORWARD IN FINAL
DECISION MAKING.
THERE'S WORK AT ALL LEVELS,
AGAIN THIS IS STILL IN THE
CONCEPT DEVELOPMENT PHASE, AND
MORE TO COME I THINK AT OUR NEXT
BOARD MEETING.
WE'LL HAVE SOME EXCITING UPDATES
ON HOW FAR WE'VE GOTTEN IN THE
PROCESS.
>> OKAY.
WONDERFUL.
THANK YOU SO MUCH.
THAT'S VERY EXCITING.
NANCY, GO AHEAD.
>> THANKS FOR THE UPDATES.
THAT WAS REALLY INTERESTING AND
HELPFUL.
I DO HAVE A QUESTION ALSO ON THE
CONTINUOUS INNOVATION
COMPONENTS.
MAYBE THIS QUESTION IS PREMATURE
BUT AS YOU'RE WORKING IN THOSE
FOUR WORK STREAMS, I ASSUME THAT
ONE OF THE NEXT STEPS IS
ESTABLISH TIMELINES AND YOUR
GOALS FOR THOSE.
BUT DO YOU HAVE AREAS OF FOCUS
OF OUTCOMES THAT YOU'RE GOING TO
ENCOURAGE IN INNOVATION SPACE?
ARE THERE PARTICULARLY WITH
RESPECT TO ONE OF THE NIH VISION
PRINCIPLES ABOUT THE RAPIDLY
ADAPTING DISCOVERIES INTO
CLINICAL CARE, SO ARE THERE
PARTICULAR AREAS THAT YOU'RE
GOING TO TRY TO EMPHASIZE IN
THOSE INNOVATION WORK STREAMS?
>> SO, I THINK THE CALL FOR
INNOVATION CERTAINLY WILL
PRIORITIZE THE INNOVATION, OR
THE STRATEGIC PRIORITIES, OF
NLM.
WE HAVE SOME SPECIFIC REQUESTS I
THINK FROM THE NIH DIRECTOR
ABOUT NEW WORK THAT WE COULD BE
DOING TO MODEL A NEW ROLE FOR
NLM, SO AROUND THE DATA
ECOSYSTEM ESPECIALLY, HOW WE
WOULD BE DOING REPRESENTATION
AND CATALOGING REMOTE DATA
ELEMENTS, WHAT GOVERNANCE LOOKS
LIKE IN THAT SPACE.
I THINK THERE COULD BE SOME VERY
STRONG OPPORTUNITIES TO DO SOME
PILOT INNOVATION WORK.
WE'RE TRYING TO EVOLVE THIS BOTH
AS AN INTERNAL INSTITUTE
METHODISM TO MAKE SURE THAT OUR
INNOVATION CAPACITY IS BROADLY
ACCESSIBLE TO ALL PARTS OF THE
STAFF, ALL UNITS OF THE LIBRARY,
NOT JUST IN A FEW OPERATIONAL
DIVISIONS.
AND THEY WOULD THEN IN TURN BE I
THINK APPLYING THIS TO THE
PRINCIPAL IN CHARGE, IN OUR
STRATEGIC PLAN WHAT OUR VISION
IS DIRECTING US TO DO.
THAT BEING SAID, I THINK THERE'S
PROBABLY A LIMITED AMOUNT WE CAN
DO THIS YEAR.
WE HAVE A MODEST BUDGET FOR
PILOTING THIS, AND I THINK WE
CAN'T BE MORE DEFINITIVE UNTIL
THE BUDGET IS SOLVED AND WE KNOW
THE FINAL NUMBERS WE'RE WORKING
WITH.
THAT'S WHERE WE CAN START DOING
CALL FOR APPLICATION.
>> THANKS.
>> DID THAT HELP?
>> THANKS VERY MUCH.
>> ARE THERE OTHER QUESTIONS OR
COMMENTS?
YES, COLONEL AZAD.
>> I WANT TO SAY THANK YOU FOR
BEING ON THE FOREFRONT OF, YOU
KNOW, LEADING INNOVATION, AND
JUST ONE QUICK QUESTION.
AS FAR AS THE C.R. GOES, HOW
DOES THAT AFFECT THE NATIONAL
INSTITUTE OF LIBRARIES, JUST
KIND OF A QUESTION.
>> WELL, STRICT ANSWER, IT
DEPENDS IF.
C.R. ENDS AND WE GET A BUDGET TO
FINISH THE YEAR UNDER A BUDGET
OR DO WE FINISH THE YEAR UNDER A
C.R.
IF YOU'RE UNDER C.R. YOU CANNOT
TAKE UP NEW ACTIVITIES OR
PROGRAMS, A LIMITING DEVICE.
WE'RE HOPEFUL WE'LL GET A BUDGET
PASSED.
THAT DOES OPEN THE OPPORTUNITY
FOR US TO DEVELOP NEW PROGRAMS
AND PRIORITIES.
THAT'S THE BIG CHANGE.
RIGHT NOW THE BUDGET LEVEL AND
THE C.R. BASICALLY THE C.R.
CARRIES YOU AT LAST YEAR'S
LEVEL.
LOOKS LIKE THE BUDGET IS LAST
YEAR'S LEVEL.
FINANCIALLY THEY ARE ABOUT THE
SAME BUT I THINK THE DIFFERENCES
WILL BE IN THE AUTHORITY AND
WHAT WE CAN DO IN THE REMAINING
HALF OF THE YEAR.
HOPEFULLY IT WILL BE IMPACTFUL
AND THAT WE'LL GET A BUDGET SOON
AND CAN EXECUTE SOME OF THIS NEW
WORK.
>> OKAY, THANK YOU.
>> THANK YOU FOR THE UPDATE.
IT'S ALWAYS WONDERFUL TO HEAR
NLM IS THIS INCREDIBLE SOURCE OF
DEPENDABLE EQUITABLE AND
ACCESSIBLE INFORMATION AND THAT
IS ALWAYS HELD WITH THIS SPIRIT
OF INNOVATION, AND REALLY
PUSHING THE BOUNDS AND BEING A
LEADER IN THIS SPACE.
IT'S WONDERFUL TO SEE THAT.
THANK YOU.
SO, EVERYONE, YOU'RE SEEING
WORKING GROUP BREAKOUT WINDOWS
POP UP.
PLEASE DON'T JOIN UNTIL AFTER MY
COMMENTS.
AND THEN WE'LL GO AHEAD TO OUR
BREAKOUTS.
FIRST OF ALL, I WANT TO NOTE A
COUPLE DISCUSSION POINTS BEFORE
WE MOVE INTO THESE BREAKOUT
DISCUSSIONS.
YOU'LL SEE PUBLIC SERVICES AND
COLLECTIONS ARE AGAIN COMBINED,
IN ADDITION TO REGULAR
DISCUSSION ITEMS THERE WILL BE
AN OPPORTUNITY TO DISCUSS THE
STRUCTURE AND CHARGE OF THESE
WORKING GROUPS.
AND HOW COLLECTION, WHATEVER
FORM THESE RESOURCES MAY TAKE,
AND PUBLIC SERVICES CAN BE
MEANINGFUL AS POSSIBLE.
NEXT RESEARCH FRONTIERS WORKING
GROUP WILL FOLLOW A PATH WITH
DISCUSSION ITEMS AND OPPORTUNITY
TO BEGIN DISCUSSION OF THE
RESEARCH FRONTIERS CHARGE,
CONSIDERING QUICKLY EVOLVING
RESEARCH PLANNED LANDSCAPE.
THIS LEADS US TO THE STRATEGIC
PLAN PLANNING WORKING GROUP,
STRATEGY IN ACTION IS A CONSTANT
FOCUS, WITH MUCH TO DISCUSS.
SO THANK YOU VERY MUCH FOR OUR
FIRST SESSION.
WE'LL MOVE INTO BREAKOUT ROOMS
>> WELCOME BACK, EVERYONE.
THANK YOU VERY MUCH FOR A GREAT
DISCUSSION IN THE WORKING
GROUPS.
IT'S NOW TIME FOR US TO HOLD
WORKING GROUP REPORTS.
AND SO, I WILL GO AHEAD AND JUST
WORK IN THE DIRECTION THAT I
PRESENTED THEM BEFORE WE LEFT
AND START WITH THE COMBINED
PUBLIC SERVICES AND COLLECTIONS
GROUP.
SO, PAUL, I THINK THAT IS YOU.
THANK YOU.
>> ALL RIGHT.
THANK YOU VERY MUCH, CHRISTY.
THANK YOU FOR THE NOTES, KRISTI
AND DIANE.
I'VE GOT A SUMMARY OF WHAT WE
TALKED ABOUT IN THE WORKING
GROUP, WE HAD FIVE AREAS WE
RECEIVED BRIEFINGS OR HAD
CONVERSATIONS ABOUT.
ONE WAS THE USER SERVICES AND
COLLECTION DIVISION
REORGANIZATION, WHICH I'LL TALK
ABOUT IN A MOMENT.
SECOND WAS AN UPDATE ON THE
COMPARATIVE GENOMICS RESOURCE
ACTIVITIES, CGR.
THE THIRD WAS UPDATE ON CLINICAL
TRIALS.COM, MY OBSERVATION OF
THE WORK IN THAT SPACE, AND WE
HAD A PRESENTATION, DATASET
CATALOG, AND FINALLY WE TALKED
ABOUT THE COLLECTION DEVELOPMENT
GUIDELINES UPDATES THAT HAVE
OCCURRED.
I WANT TO GIVE A SHOUT OUT AND
THANKS.
WHEN DIANE PRESENTED FOR PETER,
AND MARGARET McGEE TALKED
ABOUT COLLECTIONS FEES AS I
MENTIONED, FIRST ITEM WAS UPDATE
ON USER SERVICES AND COLLECTION
DIVISION TRANSITION THAT HAS
OCCURRED.
THIS IS PART OF THE
REORGANIZATION THAT COMES OUT OF
THE STRATEGIC PLAN FOR NLM,
2020-2036 FOR THE LIBRARY
SERVICES, NOW USER SERVICES AND
COLLECTION DIVISION.
IT'S A DIVISION WITH A SERIES OF
BRANCH, A DIFFERENT
ORGANIZATIONAL STRUCTURE THAN
BEFORE.
WITHIN ARE FIVE LONG-RANGE
GOALS, FIRST IS CREATE
MODERNIZED STRUCTURE FOCUSED ON
FUNCTIONS THAT NEED TO OCCUR
WITHIN THE ORGANIZATION, AND
THAT HAS BEEN ACCOMPLISHED.
THE OTHER FOUR LONG-RANGE
PLANNING GOALS HAD TO DO WITH
UNIFYING COLLECTIONS, SO AS TO
BRING TOGETHER DISPARATE
MATERIALS WITHIN THE COLLECTION
ITSELF, IN A MORE ACCESSIBLE
USER-ORIENTED WAY.
THE THIRD GOAL IS TO SUPPORT AND
PROMOTE THE USE OF HEALTH DATA
STANDARDS AND TERMINOLOGIES, AS
PART OF THAT REORGANIZATION
DIANE DESCRIBED A NEW BRANCH TO
FOCUS ON THAT AND TALKED ABOUT
HIRING THAT'S GOING TO BE
OCCURRING TO STAFF UP THAT
ORGANIZATION.
HAD A GOOD CONVERSATION ABOUT
THE WORK THAT IS THE FOURTH GOAL
OF THE REORGANIZATION PROVIDING
CUSTOMER SERVICE SUPPORT, USER
EXPERIENCE INTERFACE ACTIVITIES
WITH DIFFERENT PLATFORMS MADE
AVAILABLE THROUGH THE DIVISION.
AND THEN THE FIFTH GOAL IS
KNOWING AND ENGAGING OUR USERS,
THINKING MORE CREATIVELY OR
DIFFERENTLY HOW TO DO THAT GOING
FORWARD.
THIS REORGANIZATION SOMES OUT OF
THE LIBRARY SERVICES 15-YEAR
STRATEGIC PLAN THAT WAS KICKED
OFF IN 2020, REALIZED IN 2036,
AT THE 200th ANNIVERSARY OF
NLM.
AFTER THAT SESSION WE HAD A
PRESENTATION ON ALL THE
DIFFERENT ACTIVITIES WITHIN THE
COMPARATIVE GENOMICS RESOURCE
ACTIVITY AT NLM.
TERRENCE MURPHY GAVE A GREAT
OVERVIEW OF DIFFERENT ACTIVITIES
IN THAT SPACE, PARTICULARLY
AROUND THE WORK THAT WAS DONE AT
THE MEETING OF THE CGR WORKING
GROUP, AND JUST A LITTLE BIT OF
BACKGROUND, WHAT THE WORKING
GROUP IS TRYING TO DO OR IS
WORKING TO DO IS TO BRING
TOGETHER ALL THE DIFFERENT TOOLS
AND RESOURCES TO MAKE MORE
ACCESSIBLE ALL OF THE DIFFERENT
MODEL ORGANISMS, BUT BEYOND
MODEL ORGANISMS, EUKARYOTIC
ORGANISMS INTO A SYSTEM TO
FACILITATE GREATER ANALYSIS.
WHAT WAS -- WHAT OCCURRED AT THE
7th WORKING GROUP MEETING
WHICH TERRENCE TALKED THROUGH
WAS KIND OF AN UPDATE ON THE
DIFFERENT COMMUNICATIONS
ACTIVITIES ABOUT THE DIFFERENT
NCBI DATASETS AND DIFFERENT
ACTIVITIES WITHIN THE CGR KIND
OF WORKSPACE.
SOME TALK ABOUT DIFFERENT TYPES
OF WORKFLOWS AND USE CASES THAT
ARE GOING ON WITHIN THE
DIFFERENT COMMUNITIES THAT ARE
USING -- LEARNING ABOUT AND
BEGINNING TO USE THE RESOURCE.
AND THEN TALKED ABOUT WAYS TO
MAKE -- INCREASE AWARENESS.
THERE WAS A VERY ROBUST OUTWARD
FACING COMMUNICATION STRATEGY
WITH FOUR OR FIVE COMPONENTS TO
IT, AND GOOD PRESENTATION ON
TYPES OF OUTREACH AND THEIR
IMPACT, AND MORE DISCUSSION HOW
TO MAKE THAT WORK OCCUR GOING
FORWARD, AND REACHING OUT TO
DIFFERENT COMMUNITIES TO BRING
THEM INTO THE LARGER KIND OF CGR
ACTIVITY.
IT'S IF THE FOURTH YEAR OF WORK
WITH CGR.
THIRD PRESENTATION, NFI GAVE AN
UPDATE ON THE CLINICAL TRIALS
MODERNIZATION AND OVERVIEW, KIND
OF DESCRIBED HOW THEY ARE FLYING
A PLANE WHILE BUILDING A NEW
ONE.
IT WAS A REALLY GREAT ANALOGY TO
DESCRIBE WHAT'S GOING ON, PART
OF WHAT WAS DESCRIBED HOW THIS
IS -- SHE CAN CORRECT ME IF I
GET THIS NOT QUITE RIGHT BUT
TRANSITION FROM THE PREVIOUS
CLINICALTRIALS.COM TO MODERNIZED
CLINICALTRIALS.COM, BY I BELIEVE
THE SPRING OF THIS YEAR, AND THE
NOTION IS TO HAVE ALL 500,000
CLINICAL TRIALS AVAILABLE IN THE
MODERNIZED VERSION.
SHE HAD A GOOD CONVERSATION WITH
US ABOUT THE DIFFERENT TYPES OF
ACTIVITIES GOING ON WITH THAT
TRANSITION, AND THEN THE USER
ACTIVITY WITH THE NEW VERSION
VERSUS OLDER LEGACY VERSION.
THAT WAS A GOOD DEMONSTRATION OF
HOW THAT TRANSITION IS GOING,
SEEMINGLY GOING WELL, AND HOW
THEY ARE GETTING FEEDBACK ON HOW
THAT TRANSITION IS GOING.
ALSO HAD A PRESENTATION ON THE
AFFILIATED PROTOCOLS RESULT
SYSTEM, PRS, HOW THAT TRANSITION
IS TAKING PLACE AND TALKED WITH
TERRENCE ABOUT DIFFERENT
STRATEGIES AND ACTIVITIES THAT
THEY ARE PROMOTING, DEVELOPING
AND PROMOTING, TO GET TECHNICAL
INFORMATION OUT TO THE DIFFERENT
CONSUMERS OF THIS, YOU KNOW, THE
CLINICAL TRIALS PLATFORM AS
TRANSITION OCCURS IN THE
PROTOCOLS PLATFORM, AS THAT
TRANSITION OCCURS, ON SOCIAL
MEDIA, LISTSERVs, DIFFERENT
MEETINGS AND WEBERS IN FOR
DETAILED PRESENTATION, REALLY
GOOD REVIEW OF ALL THOSE
DIFFERENT MODERNIZATION
ACTIVITIES.
NEXT WE HAD A PRESENTATION ON
THE DATASET CATALOG, AS DIANE
DESCRIBED IT, THE PubMed OF
DATASETS.
AND SOME OF THIS WE'RE TESTING
OUT THE APPLICATION, THE BETA
APPLICATION, AS DIANE WAS
DESCRIBING IT TOES.
TO US.
SHE WENT OVER KIND OF WHAT THIS
TRANSITION IS AND HOW THEY ARE
CONNECTING BACK THROUGH HARVEST,
I BELIEVE TO FOUR OR FIVE
DIFFERENT OTHER TYPES OF
REPOSITORIES TO MAKE THESE
CONNECTIONS, DRYAD, HARVARD'S
DATA VERSE, IMPORT, SOME OTHER
PRODUCTS, SO TALK A LITTLE BIT
ABOUT THAT ACTIVITY AND THEN THE
MITIGATED MODELING PROTOCOL
WHICH I THINK STEVE MENTIONED
EARLIER IN HIS PRESENTATION,
LAUNCHED ON THE 23RD OF JANUARY,
A NUMBER OF US HAVE BEEN POKING
AROUND THROUGH OUR CONNECTIONS
WITHIN NLM.
IT'S GOOD TO HEAR MORE ABOUT
THIS ACTIVITY AND BE ABLE TO
TAKE IT OUT FOR A RIDE.
DIANE TALKED ABOUT HOW THERE
ALREADY MORE OPPORTUNITIES TO
GATHER FEEDBACK THAT NLM WILL BE
GATHERING FEEDBACK IN A WEBINAR
SEMINAR KIND OF OFFICE-HOURS
ACTIVITY ON THE 11th OF APRIL,
AND WAS REALLY INTERESTED IN
HEARING MORE FROM US AS WE
GATHER MORE EXPERIENCE IN USING
THE TOOL, PROVIDE SOME FEEDBACK
WITH BETA VERSION SO THEY CAN
MOVE WITH THIS PRODUCT
DEVELOPMENT AS THEY HAVE WITH
THE OTHER PRODUCTS THAT THEY ARE
ALSO DEVELOPING.
THE FINAL AREA THAT WE HAD A
PRESENTATION ON WAS FROM
MARGARET McGEE ABOUT
COLLECTION DEVELOPMENT GUIDELINE
UPDATE.
MARGARET TALKED ABOUT THREE
DIFFERENT AREAS THAT NLM HAS
TAKEN FROM OUR WORKING GROUP
BACK TO THE COLLECTION
DEVELOPMENT GUIDELINES, FOCUSED
ON THE DATASET, BEING ABLE TO
MAKE SURE DATASETS ARE PART OF
THE GUIDELINES, DATASET
GUIDELINES.
PRE-PRINTS.
AND THEN ALSO NLM RETENTION
POLICY FOR OTHER KINDS OF
MATERIALS PARTICULARLY FROM
PUBLIC HEALTH EMERGENCIES AND
HOW TO BE ABLE TO MANAGE OF
DISPOSITION OF THOSE OVER THE
LONGER TERM.
MARGARET GAVE A GREAT OVERVIEW
OF THE COLLECTION DEVELOPMENT
POLICY INTERACTS WITH GUIDELINES
NLM CARRIES OUT, INTERACTION
BETWEEN OUR WORKING GROUP AND
THE BORED OF REGENTS, PROVIDING
FEEDBACK HOW THAT GETS
INCORPORATED INTO GUIDELINES,
WHEN THERE ARE MAJOR CHANGES
THAT NEED TO BE MADE WITH POLICY
ITSELF, THINGS THAT HAD TO BE
DONE LIKE EVERY, YOU KNOW, TEN
YEARS OR SO, HOW THAT PIECE
WORKS TOGETHER.
I SEE DIANE IS POSTING DIFFERENT
COMMENTS IN THE CHAT COVERING
DIFFERENT ITEMS I THINK I'VE
BEEN COVERING.
I'D LIKE TO NOW SAY, MY
COLLEAGUES ON THE WORKING GROUP,
CONGRATULATIONS TO PRESENTERS ON
OUTSTANDING WORK ON DIFFERENT
PLAN, THE PROGRESS THAT'S BEEN
MADE WITH THE PLATFORMS, THEN
WITH THE POLICY ITSELF.
AND THEN THANKS TO MY COLLEAGUES
ON THE WORKING GROUP.
WE HAD A RICH DISCUSSION, AND
WOULD HAVE BEEN RICHER AND GONE
ON FOR TWO MORE HOURS IF WE
DIDN'T GO TO LUNCH.
BUT THERE WAS CONVERSATION HOW
GENERATIVE A.I. CAN BE
APPLIED -- WHAT ARE NLM'S
THOUGHTS ABOUT THAT, AND DIANE
TALKED ABOUT SOME TEN USE CASES
THAT STEVE PRESENTED EARLIER IN
HIS NLM OVERVIEW.
WE HAD SOME IDEAS FOR YUX THINGS
WITH THE DATASET CATALOG AND HAD
SOME CONVERSATIONS ABOUT
LEARNING MORE ABOUT WHAT NLM AND
NIH ARE DOING WITH SECURE
GENERATIVE A.I. ENVIRONMENTS, WE
COULD ALSO FIGURE OUT HOW TO
MAKE USE CASES WORK ON, THOSE
WERE THE THREE BIG AREAS.
LIKE I SAID, WE COULD HAVE
COVERED ANOTHER TEN IF GIVEN
TIME.
SO CONGRATULATIONS AND THANKS
FOR THE OPPORTUNITY.
IF ANYONE ELSE WANTS TO CHIME IN
THAT WOULD BE GREAT TOO.
>> THANKS, PAUL.
THAT WAS WONDERFUL, A RICH
DISCUSSION.
YOU'RE RIGHT, WE COULD HAVE GONE
FOR HOURS.
IT WAS WONDERFUL.
THANK YOU.
EYE LIKE TO WELCOME SOMEONE FROM
THE RESEARCH FRONTIERS BREAKOUT
GROUP TO GIVE A REPORT-OUT
PLEASE.
>> OKAY.
WELL, WE TOOK A VOTE AND DECIDED
I WOULD BE THE ONE TO GIVE THE
REPORT-OUT SINCE I WAS THE ONLY
REGENT IN THE MEETING.
OUR REPORT WILL BE
(INDISCERNIBLE), THE REPORT WE
HEARD BASED ON NUMBER OF
MEMBERS.
WE BASICALLY DISCUSSED ONE
TOPIC, WE WERE CHARGED, I WAS
CHARGED, WE WERE CHARGED WITH
DISCUSSING THE IDEA OF
REFORMULATING RESEARCH FRONTIERS
WORKING GROUP TO FOCUS ON RATHER
THAN ON FRONTIERS
RECOMMENDATIONS OF, YOU KNOW,
FUTURE DIRECTIONS WHICH ARE FOR
THE INTRAMURAL PROGRAM HANDLED
BY I GUESS THE BOARD OF
SCIENTIFIC COUNSELORS, AND EPI
SUBCOMMITTEE.
WE WERE ASKED TO PROVIDE
OVERSIGHT FOR NON-INTRAMURAL
RESEARCH PROGRAM PUBLIC
PRODUCTS.
AND THE IDEA WOULD BE THAT WE
WOULD PROVIDE ADVICE BASICALLY
ON DIRECTIONS AND NEEDS FOR
EXISTING PRODUCTS AND POSSIBLY
NEW PRODUCTS.
WE HAD A LIST OF EXAMPLES THAT,
YOU KNOW, PEOPLE WERE ADDING TO
THAT, I'M SURE WE COULD ADD
MORE, BUT LET ME READ THE LIST
PROVIDED BY NEW AND EXISTING
PUBLIC PRODUCTS, ADVICE ON
PRODUCTS, TECHNOLOGIES FOR NLM
TO CONSIDER DEVELOPING OR USING,
REPRESENTING NEEDS OF NLM
REGENTS STAKEHOLDERS TO BETTER
SERVE WITH PRODUCTS OR SERVICE,
PROVIDE ADVICE ON STANDARDS IN
SUPPORT OF PRODUCTS, NLM CREATED
UTILIZATION OF EXISTING
STANDARDS, KNOW ONTOLOGY,
SNOMED, ET CETERA, PROVIDE
ADVICE TO DISCONTINUE PRODUCTS.
WHAT WOULD BE KEY ELEMENTS TO
INCLUDE IN THE NEW CHARGE, WE
WOULD WORK WITH YOU TODAY AFTER
THE MEETING TO PREPARE NEW
CHARGE.
WE DECIDED TO EAT LUNCH INSTEAD
OF WORDSMITH, SO WE'LL GO BACK
AND FORTH AND MAKE IT A MORE
SUCCINCT STATEMENT AND WITH, YOU
KNOW, CLEAR NON-OVERLAPPING
EXAMPLES.
AND BUT THE IDEA BASICALLY TO
CHANGE THE FOCUS TO -- INSTEAD
OF FRONTIERS, SORT OF, YOU KNOW,
LOOKING BACK AT WHAT'S BEEN
ACCOMPLISHED AND WHAT CAN BE
PROMOTED FROM WITHIN.
SO, HAPPY TO TRY TO FIELD
QUESTIONS ABOUT THAT.
>> MAYBE I'LL ASK A QUESTION,
JIM.
I'M WONDERING WHEN YOU HAD THESE
CONVERSATIONS, YOU KNOW,
THINKING ABOUT THE FUTURE OF THE
GROUP AND THE DIRECTION THAT YOU
WANT TO TAKE, WERE THERE ANY
MAJOR LIKE THEMES OR -- OTHER
THAN WHAT YOU DISCUSSED IN TERMS
OF LIKE THE INTERESTED PARTIES
OR GROUPS, OR, YOU KNOW,
INDIVIDUALS TO KEEP IN MIND WITH
SOME OF THESE DISCUSSIONS.
>> WELL, ONLY TO SAY
CONSTITUENCIES OF INTEREST WOULD
BE BROAD, SO IT WOULD BE
CONSUMERS, RESEARCHERS,
PRACTITIONERS.
YOU KNOW, I THINK -- BUT WE
DIDN'T GET INTO SPECIFICS.
UNLESS SOMEBODY ELSE MIGHT HAVE
A DIFFERENT RECOLLECTION.
>> OKAY.
GREAT.
ANY OTHER QUESTIONS OR COMMENTS?
ALL RIGHT, WONDERFUL.
THANKS VERY MUCH.
OH, STEVE?
>> OH, WELL I WAS GOING TO SAY
THANKS, JIM, FOR THE REPORT-OUT
AND WORKING ON THIS.
OUR PRODUCTION SERVICES, ONE OF
THE CHALLENGES WE HAVE IS
FIGURING OUT IN THE KIND OF
CURRENT BUDGET ENVIRONMENT WHAT
SUSTAINABILITY LOOKS LIKE, HOW
TO PRIORITIZE, YOU KNOW,
SERVICES AND VALUE, AND MAKE
SURE THAT WE ARE STILL
POSITIONED TO DO TOMORROW'S
WORK, RIGHT?
AND SO THERE'S ALWAYS GOING TO
BE THIS, YOU KNOW, CHALLENGE
THAT YOU TALKED ABOUT SUNSETTING
A LITTLE BIT, I THINK THIS IS A
BIG CHALLENGE FOR NIH.
AND THIS IS AN AREA WHERE NIH
HAS ASKED FOR NLM TO OFFER
LEADERSHIP, HOW DO WE GRACEFULLY
SUNSET PRODUCTS THAT WERE
IMPORTANT BUT WE NEED TO, YOU
KNOW, RECAPTURE RESOURCES TO DO
TOMORROW'S OPPORTUNITY.
WHAT DOES THAT LOOK LIKE TO
DIMINISH THINGS.
AND SO, YOU KNOW, WE CAN'T BE
ALL THINGS TO ALL PEOPLE AND
EVER GROW ON LIMITED RESOURCES,
SO I LOOK FORWARD TO WORKING
WITH THIS WORKING GROUP AND
LEARNING KIND OF WHAT YOUR
THINKING IS, GUIDANCE WE CAN GET
IN THAT AREA AS WE TRY TO
FORMALIZE SOME SUNSETTING
PRINCIPLES.
LOOK FORWARD TO THAT, THANKS.
>> WONDERFUL.
THANKS VERY MUCH.
ALL RIGHT.
I'D LIKE TO INVITE A
REPRESENTATIVE FROM THE
STRATEGIC PLANNING BREAKOUT
GROUP TO GIVE A REPORT PLEASE.
>> IS THAT ME?
IS THAT ME?
>> YES.
I THINK THAT'S YOU.
>> OKAY.
SO SUSAN KIRSCH, FROM VETERANS
HEALTH ADMINISTRATION,
APPRECIATE THE OPPORTUNITY TO
JOIN THIS GROUP.
I'M PADDLING FAST TO CATCH UP ON
SOME OF THESE REALLY HONESTLY
FASCINATING AND APPLICABLE
EFFORTS THAT ARE MEANINGFUL IN
THE VETERANS HEALTH
ADMINISTRATION AS WELL.
SO, THE FIRST PRESENTATION THAT
WE HEARD WAS LEADING THE WAY TO
PUBLIC ACCESS TO PUBLICATION,
INTERAGENCY SUPPORTS NLM
STRATEGIC GOALS, ENABLES ACCESS
TO FEDERALLY FUNDED WORK.
THE GROUP ON PUBLICATIONS, UNDER
OSP AND WHITE HOUSE
SUBCOMMITTEE, AND SUBCOMMITTEE
OF OPEN SCIENCE, I DON'T KNOW
ALL THE ACRONYMS BUT I'M
FAMILIAR WITH SOME, AIMS TO
DEVELOP STRATEGIES, RESOURCES
AND TOOLS FOR MAXIMIZING PUBLIC
ACCESS TO FEDERALLY FUNDED
PUBLICATIONS.
I FOUND IT REALLY INTERESTING
THAT NLM HAS BEEN WORKING IN
THIS SPACE FOR YEARS, AND THAT
PMC IS THE SOLE REPOSITORY FOR
RESULTS OF THE NIH-FUNDED
RESEARCH.
AND ALSO, WORKS WITH AND
COLLABORATES WITH NINE OTHER
FEDERAL AGENCIES AND OTHER
FUNDERS, I THINK THE GATES
FOUNDATION WAS ONE OF THEM, THAT
LIST.
AND SO WHERE IS THIS SUBGROUP
GOING?
THERE'S AN ACTION PLAN THAT
FOCUSED ON PRIORITIES DRIVEN BY
THE 2022 OSTP PUBLIC ACCESS MEMO
ON ENSURING FREE EQUITABLE
ACCESS TO FEDERALLY FUNDED
RESEARCH.
KATIE HIGHLIGHTED A FEW
PRIORITIES OF THE PUBLICATION
WORKING GROUP ACTIONS.
SO ACTION NUMBER 2 ENABLING
MACHINE LEARNING IS APPLICABLE
IN THE CURRENT ENVIRONMENT AND
PROPOSED ACTION TO DEVELOP AND
PROMOTE STRATEGIES TO ENABLE
LARGE SCALE TEXT MINING AND
ANALYSIS OF FEDERALLY FUNDED
PUBLICATIONS.
I DON'T EXACTLY NOW PERSONALLY
HOW THIS WILL ALL WORK BUT I
THINK THAT IT WILL BE
INTERESTING TO UNDERSTAND HOW TO
USE A.I. AND M.L. TO ACCELERATE
THIS WORK, AND THEN NLM EXAMPLE
IS PMC ARTICLE DATASETS.
PMC OPEN ACCESS SUBSET HAS MORE
THAN 6 MILLION ACCESS ARTICLES,
FUNDAMENTALLY LOOKING FROM MY
OWN NOTES, HOW DO WE MAKE
PUBLICLY FUNDED RESEARCH MORE
AVAILABLE, I THINK THAT'S A GOAL
THAT I WROTE DOWN THAT RESONATED
WITH ME TO CONTINUE TO EXPAND
ACCESSIBILITY THERE.
THAT WAS IMPORTANT.
AND THEN ANOTHER BIG EFFORT WAS
EXPLORING ALTERNATIVES TO
JOURNAL ARTICLES TO SPEED
ACCESS, DEVELOP AND PROMOTE
STRATEGIES TO SUPPORT DISCOVERY
OF AGENCY RESEARCH PRODUCTS,
PRE-PRINT TECHNICAL REPORTS AND
OTHER GREAT LITERATURE WHICH IS
ALWAYS I THINK IN MY MIND
IMPORTANT TO BE PART OF
UNDERSTANDING ALL THAT WE DO
HAVE OUT THERE AND AVAILABLE AND
THAT WE'RE LEARNING FROM.
SO BEFORE KATIE JUMPS IN TO SAY
WHAT I DID MISS, I THINK THAT
I'LL END BY SAYING THESE EFFORTS
RESULT IN STRATEGIC ALIGNMENT
ACROSS FEDERAL AGENCIES AND
SUPPORT NLM GOALS AND OPENS UP
SPACE FOR NLM TO LEAD, SO I
CERTAINLY WAS NOT COMPREHENSIVE
HERE BUT HOPEFULLY KATIE OR
OTHERS THINK I HIT --
>> YOU DID GREAT.
>> FAST TALKING TO GET IT ALL
IN.
I'LL PAUSE BEFORE I GO TO THE
NEXT ONE.
IS THAT OKAY?
OR YOU WANT ME TO DO BOTH?
>> I GUESS GO AHEAD AND COVER
BOTH AND THEN MIRIAM AND I CAN
TAG TEAM.
>> OKAY, PERFECT.
THIS ONE, MY PORTFOLIO IN
VETERANS HEALTH ADMINISTRATION
IS EXECUTIVE BRANCH OVERLAPS
RESEARCH AND DEVELOPMENT, AND IT
CURRENTLY A.I. IS IN OFFICE OF
RESEARCH AND DEVELOPMENT, AS
WELL AS INNOVATION AND HEALTH
PROFESSIONS TRAINING.
SO THIS WAS REALLY RESONATING
WITH ME, AND REALLY LEARNED FROM
MIRIAM IN THIS ABOUT, YOU KNOW,
MOVING FORWARD FROM A YEAR OF
OPEN SCIENCE TO A FUTURE FOR
OPEN EQUITABLE AND SECURE
RESEARCH OF OUR 9 MILLION
VETERAN POPULATION.
EQUITY IS SOMETHING WE THINK
ABOUT IN THIS RELATIVELY
UNDERSERVED POPULATION, SO A LOT
OF THIS MADE SENSE TO ME.
2023 WAS DESIGNATED THE YEAR OF
OPEN SCIENCE, BY THE WHITE HOUSE
OFFICE OF SCIENCE AND TECHNOLOGY
POLICY, OSTP.
17 AGENCIES AND OSTP
PARTICIPATED IN THE YEAR OF OPEN
SCIENCE, ACTIVITIES WERE
COORDINATED THROUGH INTERAGERY
YEAR OF OPEN SCIENCE SUBGROUP
WHICH EXPLORED ACTIVITIES AND
OPPORTUNITIES FOR COLLABORATION,
AND OFFICIAL GOVERNMENT
DEFINITION IS -- I THINK WE'RE
IN AN ENVIRONMENT WE WANT TO
MAKE SURE WE CLARIFY WHAT THIS
IS AND ISN'T, FOR THE GENERAL OR
MORE LAY FOLKS IN THIS AREA.
I'M STRUGGLING WITH THAT WITH
A.I. DEFINITIONS, CLINICIANS,
AND TO SAY THAT FOR OPEN SCIENCE
IT IS THE PRINCIPAL PRACTICE OF
MAKING RESEARCH PRODUCTS AND
PROCESSES AVAILABLE TO ALL WHILE
RESPECTING DIVERSE CULTURES,
FOSTERING COLLABORATION, EQUITY,
A DEFINITION FOR FOCUS AND IT
WAS VERY STRONG DEFINITION FROM
THIS PRESENTATION.
OPEN SCIENCE ALSO CUTS ACROSS
NLM'S MISSION AND STRATEGIC
PLAN.
THE GOALS OF NLM STRATEGIC PLAN
ARE REFLECTED THROUGHOUT THE
DEFINITION, MAKING RESEARCH
PRODUCTS AND PROCESSES SUCH AS
MAKING RESEARCH PRODUCTS AND
PROCESSES AVAILABLE, TO ALL, IS
ROOTED IN WHAT NLM DOES.
PubMed, PMC,
clinicaltrials.gov, AND MORE.
IN TERMS OF RESPECTING DIVERSE
CULTURES, NLM IS A POWERFUL WAY
TO CONNECT COMMUNITIES ACROSS
THE COUNTRY, PROVIDING
OPPORTUNITIES TO DISSEMINATE
INFO, FEEDBACK, MAINTAINING
SECURITY, PRIVACY IS ANOTHER
EXAMPLE NLM PROVIDES LEADERSHIP
AND INNOVATION INCLUDING
CONTROLLED ACCESS TO SENSITIVE
DATASETS, I DO NOT KNOW THIS
DATASET, DBGaP.
SO HOPEFULLY SOME OF YOU DO.
I WILL BE LEARNING.
BUT REALLY ALL OF THIS ALIGNS
AND FOSTERS COLLABORATIONS,
REPRODUCIBILITY, EQUITY, WHICH
IS THE PURPOSE AND VALUE ADD OF
OPEN SCIENCE.
SO THAT MADE A LOT OF SENSE TO
ME.
AND THAT ALIGNMENT WITH NLM
STRATEGIC PRIORITIES.
SO, WHAT I ALSO DID LEARN AND
THOUGHT WAS INTERESTING WAS
ABOUT THE DESIRE TO HAVE A
CONFERENCE THAT WILL BRING SOME
FOLKS TOGETHER, AND LEARN FROM
DIFFERENT TYPES OF LEADERS, BOTH
RESEARCHERS AND NON-RESEARCHERS,
AND IN A WAY TO CONTINUE TO
DEVELOP A WAY FORWARD FOR
EQUITABLE OPEN SCIENCE, TO
EXAMPLES, ONE WAS DEFICIT MODEL,
IDEA RESEARCHERS AND INFORMATION
PROFESSIONALS, THOSE WITH
SPECIAL ACCESS TO KNOWLEDGE AND
INFORMATION HAVE OPPORTUNITY TO
BESTOW INFORMATION UPON OTHERS.
THIS IS MORE UNIDIRECTIONAL.
WE ONLY MAKE OUTPUTS AVAILABLE
AT THE END OF THE RESEARCH LIFE
CYCLE, REALLY THROUGH A MEETING
AND COLLABORATION WITH THE
PARTICIPATION MODEL, MAYBE
THERE'S DIFFERENT OPPORTUNITIES
WHICH INVOLVE BIDIRECTIONAL
SHARING OF INFORMATION THROUGH
OUTRESEARCH CYCLE, CREATING
ON-RAMPS AND BRIDGES BETWEEN
WHAT WE DO AND NIH AND
COMMUNITIES WE'RE TRYING ON
RESEARCH.
OR TRYING TO REACH.
I THOUGHT THAT MADE A LOT OF
SENSE.
SOMEONE WHO HASN'T SEEN A LOT OF
THIS BEFORE.
AND HOW CAN NLM LEVERAGE ITS
POSITION TO SUSTAINABLY PROMOTE
EQUITABLE AND MEANINGFUL ACCESS
TO NIH-FUNDED RESEARCH FOR
COMMUNITIES OF END USERS WAS
DISCUSSED.
NLM UNIQUELY POSITIONED HERE TO
ADVANCE EQUITABLE OPEN SCIENCE,
GIVEN THE VARIOUS COMMUNITIES WE
ENGAGE WITH AND REACH, WHICH IS
GREAT.
YOU CAN THINK OF NLM AS A NODE
IN THE NETWORK, WE CAN ENVISION
NLM AT THE CENTER THEN WITH
INFORMATION FLOWING OUT FROM US
TO COMMUNITIES PERHAPS EVEN
VETERAN COMMUNITY AS AN EXAMPLE.
SO THAT WE'RE REALLY SHARING
WITH OTHERS AND ITERATING, IN MY
WORDS, WITH COMMUNITIES
BIDIRECTIONALLY, I THOUGHT IT
WAS INTERESTING.
SO NLM DOESN'T HAVE TO REACH
EVERY COMMUNITY, NLM HAS TO USE
A NETWORK WITH I THINK OF IT AS
HUBS AND SPOKES, WE'VE DONE THAT
IN THE V.A. A LOT SUCCESSFULLY.
SO, LAST PART, BEFORE THE
DISCUSSION, NLM IS DEVELOPING A
WORKSHOP, A NETWORK APPROACH TO
ADVANCING EQUITABLE OPEN
SCIENCE, AS I MENTIONED.
AND THE WORKSHOP I THINK WAS
ANNOUNCED TO BE TOWARD THE END
OF MAY OR EARLY JUNE, FINALIZING
SOME OF THAT.
AND UNDERSTANDING HOW NLM'S
RESOURCES ARE CURRENTLY ACCESSED
AND USED BY KNOWLEDGE
TRANSLATORS, IDENTIFYING
OPPORTUNITIES TO IMPROVE REACH
AND UTILITY OF NLM RESEARCH AND
TOOLS FOR KNOWLEDGE TRANSLATION,
THESE ARE THE AIMS OF THE
WORKSHOP, DEVELOP IDEAS AND
SUGGESTIONS FOR NLM TO BETTER
REACH AND ENGAGE KNOWLEDGE
TRANSLATORS, PROMOTING EQUITABLE
ACCESS TO HEALTH AND BIOMEDICAL
RESEARCH INFORMATION, HOPEFULLY
THIS WILL BE DONE BY CONVENING
20 TO 25 EXPERTS, KNOWLEDGE
TRANSLATORS, FOR A DAY AND A
HALF, THAT'S I THINK THE ASK.
AND REALLY LOOKING AT WHO IS THE
AUDIENCE, WHAT ARE ENGAGEMENT
GOALS, SO I THINK THERE ARE
ASPECTS THAT NEED TO BE FLESHED
OUT.
BUT THIS WAS THE DIRECTION, WHAT
CHALLENGES DO THEY HAVE, THESE
ARE FOR THE GOALS OF THE MEETING
AND WHAT WOULD WE ASK OF THE
PARTICIPANTS.
WHAT CAN NLM DO TO EASE THOSE
CHALLENGES?
HOW DO YOU ENGAGE WITH OTHER
KNOWLEDGE TRANSLATORS TO
INCREASE THE REACH AND IMPACT OF
YOUR EFFORTS, AND SO I THINK I
WILL TAKE A BREATH AND END THERE
AND HOPEFULLY MIRIAM AND OTHERS
THINK I'VE DONE JUSTICE TO THAT
SECTION AS WELL.
>> SOUNDS GREAT.
THANK YOU.
>> THANK YOU.
LIKE I SAID, I'VE LEARNED A LOT
BY LISTENING TO THESE TWO
PRESENTATIONS.
IT'S GREAT.
>> WONDERFUL.
IT'S AN EXCITING TIME IN THIS
SPACE, IT'S WONDERFUL TO SEE THE
GREAT WORK AT NLM.
ARE THERE QUESTIONS FROM THE
ATTENDEES FOR THIS WORKING
GROUP?
PHILIP, DO I SEE YOUR HAND GOING
UP?
>> YEAH.
>> REAL HAND
>> THE REAL HAND GOES UP FASTER
THAN THE OTHER HAND.
REGARDING THE OPEN SCIENCE AND
OPEN ACCESS TO MATERIALS, HOW
THAT'S PROLIFERATING, THESE
DAYS, IS THERE OPPORTUNITIES
FROM NLM OR EVEN SOME SORT OF
CROSS-POLLINATION AMONGST
FEDERAL AGENCIES TO BEGIN
WORKING ON TRANSLATION OF THAT,
SO RATHER THAN GOING WITH GOOGLE
TRANSLATOR OR SOMETHING LIKE
THAT, BUT ACTUALLY HAVING SOME
SORT OF MAYBE A MUCH MORE
IMPROVED SCIENTIFIC CONTEXTUAL
TRANSLATION THAT -- MAYBE THAT'S
A FUNDING PROPOSAL, JUST TO MAKE
SURE THAT ALL OF THE MILLIONS OF
ENGLISH -- SIMILAR TO MEDLINE
PLUS, WHERE THIS IS COMING FROM,
MEDLINE PLUS, SOME ENGLISH
RESEARCH CAN ALSO BE TRANSLATED
INTO SPANISH, PORTUGUESE, ET
CETERA, ET CETERA.
THAT'S PROBABLY A BROADER GROUP
QUESTION.
>> YES, SO WHAT I WAS SAYING
WE'VE BEEN LOOKING INTO
TRANSLATION IS COMPLICATED
BECAUSE THERE'S COPYRIGHT
ISSUES, YOU KNOW, RESOURCE
ISSUES, BUT ONE OF THE THINGS WE
HAVE BEEN DOING IS LOOKING AT
EXTENDING OUR JOURNAL REVIEW
PROCESSES TO BE MORE LANGUAGE
INCLUSIVE, HISTORICALLY PUBMED
CENTRAL WAS, YOU KNOW -- IT WAS
KIND OF AN ENGLISH-ONLY JOURNAL
ARCHIVE.
MEDLINE HAS ALWAYS BEEN MORE
INCLUSIVE OF LANGUAGES.
WE'VE BEEN TRYING TO DO OVER THE
LAST FEW YEARS IS, A, IDENTIFY
THOSE TITLES WITHIN MEDLINE THAT
WE CAN PROVIDE FULL TEXT TO IN
OTHER LANGUAGES, AND THEN WE'VE
ALSO BEEN LOOKING AT LEVERAGING
OUR JOURNAL REVIEW PROGRAM FOR
PMC TO INCLUDE SPANISH LANGUAGE
JOURNALS.
AND WE'VE BEEN DOING THAT FOR
ABOUT A YEAR NOW.
AND WE SEE IT AS A WAY, BOTH OF
REACHING MORE DIVERSE AUDIENCES,
BUT ENSURING OUR COLLECTION
REALLY DOES REFLECT THE GLOBAL
BIOMEDICAL LITERATURE, AND
THAT'S WHERE WE ARE ON THAT
LARGELY.
I THINK THERE ARE ADDITIONAL
LAYERS OF IT, EVEN WITHIN
ENGLISH, ABOUT THAT KIND OF
TRANSLATION OF THE RESEARCH TO
SOMETHING THAT HEALTH
PRACTITIONERS CAN USE, PATIENTS,
THE PUBLIC, THERE ARE LEVELS OF
THAT, I I THINK WHAT MIRIAM IS
WORKING ON WITH THE WORKSHOP
COULD START TO GET AT.
I'VE HEARD OF A NUMBER OF
EFFORTS, PLAIN LANGUAGE SUMMARY,
START HAVING A MOMENT AGAIN AND
I THINK IT'S AN INTERESTING AREA
THAT WILL CONTINUE TO EVOLVE.
SO, IT'S EXCITING.
>> I CAN IMAGINE THINGS EVEN IF
IT'S NOT THE FULL ARTICLE,
POSSIBLY THE CONCLUSION AS THE
POINT OF CARE RESOURCES LIKE TO
CALL IT THE CLINICAL PEARLS.
WHAT ARE THE MAIN FACTORS THAT
SOME CLINICIANS ABROAD CAN TAKE
FROM THIS, THINGS LIKE THAT.
>> YEAH, THAT'S A REALLY
INTERESTING THOUGHT.
I FEEL LIKE IF WE CAN GET
OURSELVES TO MORE OF THOSE PLAIN
LANGUAGE SUMMARIES THEY BECOME
MUCH MORE TRANSLATABLE.
SO IT MIGHT BE A MULTI-STEP
PROCESS.
STEVE POLITELY HAS HIS HAND UP
SO I'LL STOP.
>> ON THAT POINT, KATIE, THERE'S
GENERATIVE A.I. PROJECTS RIGHT
NOW ACROSS NIH WORKING ON PLAIN
LANGUAGE SUMMARIES AND GRADE
LEVEL TRANSLATIONS, WRITING IN
PLAIN LANGUAGE, AND I THINK THAT
WOULD BE THE INPUT YOU'RE
TALKING ABOUT.
AND SO WE MIGHT HAVE SOME
SCALABLE ALGORITHMIC APPROACHES
THAT DON'T REQUIRE EVEN EFFORTS
TO DO THE TRANSLATING.
THAT'S THE ART IN THIS.
GREAT QUESTION.
>> ALL RIGHT.
ANY OTHER QUESTIONS?
OKAY.
WONDERFUL.
WELL, WHAT WE'RE GOING TO DO,
WE'RE SLIGHTLY AHEAD OF
SCHEDULE.
SO I THINK WE'RE GOING TO MOVE
FORWARD WITH OUR NEXT
PRESENTATION, AND THEN HAVE A
BIT LONGER BREAK AFTERWARDS.
SO, WITH THAT, I WOULD LIKE TO
WELCOME DR. TERESA PRZYTYCKA,
WHO WILL BE PRESENTING ON
COMPUTATIONAL APPROACHES TO
STUDYING MUTATIONAL SIGNATURES.
>> I WILL SHARE MY SCREEN HERE.
LET ME CONFIRM THAT YOU CAN SEE
MY SLIDES OKAY.
>> YEP.
>> SO, GOOD AFTERNOON,
EVERYBODY.
MY NAME IS TERESA PRZYTYCKA.
AND I'M A SENIOR INVESTIGATOR IN
COMPUTATIONAL AND BIOLOGY BRANCH
OF NATIONAL LIBRARY OF MEDICINE.
LET ME START WITH AN
INTRODUCTION TO MY GROUP.
THIS IS A RATHER DIVERSE GROUP
OF RESEARCHERS, MOSTLY COMPUTER
SCIENTISTS, SO PEOPLE TRAINED IN
COMPUTER SCIENCE.
THE DEVELOPMENT OF COMPUTATIONAL
METHODS THAT ARE ADVANCING
UNDERSTANDING OF BIOMOLECULAR
SYSTEMS.
TO BE MORE SPECIFIC, WE'RE
WORKING WITH TOPICS LIKE
UNDERSTANDING DEREGULATION,
STARTING NETWORK BIOLOGY, HOW
BIOLOGIC ENTITIES CONNECT, TUMOR
EVOLUTION, AND ALSO AS NEEDED WE
DEVELOP ALGORITHMS FOR THE NEW
TECHNOLOGIES, A DIVERSE SET OF
INTEREST.
AT A GIVEN TIME WE FOCUS ON
SEVERAL OF THOSE TOPICS.
AND TODAY WHAT I SELECTED FOR
THE PRESENTATION AS RELATED TO
NEWLY EMERGING CONCEPT IN CANCER
BIOLOGY KNOWN AS MUTATION
SIGNATURES.
WHEN I SELECTED THIS TOPIC FOR
SEVERAL REASONS.
FIRSTLY, NEW AND EMERGING,
INTERESTING TO SEE HOW IT
PROVIDES NEW INSIGHT TO CANCER.
NEXT, WE'VE BEEN WORKING FOR A
COUPLE YEARS ALREADY.
NEXT, IT HELPS ME TO EXEMPLIFY
HOW VARIOUS TYPE OF DATA CAN BE
COMBINED INDIVIDUAL DATASETS
WOULD NOT BE ABLE TO PROVIDE.
FINALLY VERY INTERESTED IN
DEVELOPING AND APPLYING OUR
ALGORITHMIC KNOWLEDGE TO ANALYZE
THIS DATA.
SO YOU CAN ALSO SEE HOW NOT ONLY
DATA BUT DEVELOP NEW METHODS,
NEW APPROACHES, AND PROVIDE
VARIOUS INSIGHTS.
SO, I'LL START MY PRESENTATION
WITH INTRODUCTIONS.
I'LL SAY A FEW MORE WORDS WHY
STUDIES ARE INTERESTED, WHY THIS
TOPIC IN THE CANCER BIOLOGIST,
THEN I WILL PRESENT SOME OF
METHODS WE DEVELOP, NOT GOING TO
GO INTO TECHNICAL METHODS, JUST
TRY TO PROVIDE SOME GENERAL
OVERVIEW, I WILL SAY SOME VISION
FOR OUR STATUS IN THIS AREA.
OKAY.
SO, LET ME STOP MY POINTER HERE.
OKAY.
SO, AS YOU I'M SURE ARE AWARE
OF, THE DNA MOLECULE IN EVERY
SINGLE CELL OF OUR ORGANISM IS
EXPOSED TO VARIOUS TYPE OF
DAMAGE.
THOSE MAY BE DAMAGE THAT RELATES
TO EXTERNAL FACTORS LIKE UV
LIGHT OR, SAY, SMOKING OR SOME
DRUGS.
BUT ALSO NORMAL CELL FUNCTIONS
ARE NOT PERFECT.
SO THEY DEMONSTRATE JUST APPEARS
RANDOMLY THROUGH THE NATURAL
CELL CYCLE.
PERHAPS NOT SO WELL APPRECIATED
IS HOW MUCH DAMAGE THERE IS.
IT'S BEEN ESTIMATED THAT ON
AVERAGE, THAT CELL CAN ACQUIRE
AS MANY AS 10 TO THE 5th
LESION PER DAY.
THIS IS A NORMAL AMOUNT OF
DAMAGE.
HOWEVER REPAIR MECHANISM WILL
REPAIR THOSE DAMAGE.
REPAIRED, A SMALL AMOUNT OF THIS
UNREPAIRED LESIONS BECAME
MUTATIONS AND THEY
(INDISCERNIBLE).
ALSO THOSE MUTATIONS ARE
HARMLESS IN PATIENTS, DO NOT
HAVE IMPACT ON CELL FUNCTION.
WE REFER TO THEM AS
(INDISCERNIBLE).
OCCASIONALLY A MUTATION MAY
PROVIDE ADVANTAGE TO CANCER GROW
OR JUST CELL GROW, AND BE
MUTATION THAT DERIVE CANCER
(INDISCERNIBLE).
MOST OF THE STUDY WAS IN CANCER,
AND IN OTHER DISEASES, WAS TO
LOOK AT WHAT DRIVES THE DISEASE.
HOWEVER, NOW THOSE MUTATIONS
THAT WE PREVIOUSLY NEGLECTED MAY
BE INTERESTING TO STUDY AND LOOK
AT.
IT'S BEEN APPRECIATED FOR SOME
TIME ALREADY THAT VARIOUS
MUTAGENIC PROCESSES LEAVE
IMPRINTS ON THE HUMAN GENOME.
FOR EXAMPLE, UV LIGHT IS KNOWN
TO MUTATE, TO PROVIDE MUTATION,
SO IF THIS HERE IS REFERENCE
GENOME, AND LEE -- BELOW IS
MUTATED, C TO T, AND ACTUALLY
PARTICULARLY (INDISCERNIBLE) TO
THE MUTATIONS.
WE HAVE OTHER MUTAGENIC
PROCESSES.
HERE IS AN ENZYME OUR BODY
PRODUCES, CAN BE MUTAGENIC, AND
THIS ALSO CAN MUTATE C TO T, BUT
MUTATIONS ARE VERY LIKELY, OR
MORE LIKELY, I SHOULD SAY, WHERE
THE C FROM NUCLEOTIDE, FOLLOWING
THIS WAY.
SO WE APPEAR TO HAVE THOSE
CHARACTERISTICS MUTATIONS THAT
CAN BE LINKED BACK TO PROCESSES
THAT GENERATE THEM.
AND THIS HAVING ENOUGH DATA
PROVIDES INTERESTING APPROACH
THAT WE CAN START MUTAGENIC
PROCESS THAT WE OBSERVE IN HUMAN
GENOME.
I'M IN ORDER TO DISCUSS THOSE
PATHWAYS WE HAVE TO DEFINE MORE
FORMALLY WHAT MUTATION
SIGNATURES ARE.
I WILL INTRODUCE THE CONCEPT AND
YOU CAN -- YOU WILL SEE THERE
MAY BE OTHER WAYS OF FINDING
FORMALIZING THIS IDEA.
HERE WE FORMALIZE AS FOLLOWS.
WE DIVIDE ALL THE MUTATIONS INTO
SO-CALLED MUTATIONAL CATEGORIES.
MUTATIONAL CATEGORIES WILL BE
DEFINED HERE IS A MUTATION, WE
LOOK AT NUCLEOTIDE, CENTRAL ONE
IS MUTATED, AND THE FLANKING ONE
PROVIDES (INDISCERNIBLE).
WE CAN HAVE 96 MUTATIONAL
CATEGORIES, SO MANY COMBINATION
OF THIS, OF THIS CONFIGURATION.
AND DEFINE MUTATION NOW
SIGNATURE AS DISTRIBUTION OF
CATEGORIES.
WE LIST THE CATEGORIES HERE IN
SOME ORDER.
AND THEN FOR EVERY CATEGORY WE
SEE WHAT IS THE PROBABILITY
GIVEN MUTAGENIC PROCESS GENERATE
MUTATION OF THIS CATEGORY.
SO, WE HAVE MUTATION SIGNATURES,
NOW OF COURSE WE EVEN DON'T KNOW
ALL THE MUTATION PROCESSES THAT
THEY MAY BE AROUND, AND EVEN
LAST WE REALLY DON'T KNOW IN
ADVANCE WHAT SIGNATURE MIGHT BE.
SO HERE COMPUTATIONAL APPROACH,
I HAVE HERE SOME, YOU KNOW,
OTHER MORE EXAMPLE, THAT VARIOUS
THOSE PROCESS REALLY MUTAGENIC
SIGNATURE AS YOU CAN APPRECIATE
FROM THIS GRAPHIC REPRESENTATION
ARE IN THE DIFFERENT BUT THE
NEXT QUESTION IS HOW WE CAN FIND
MUTATION SIGNATURE, HOW WE CAN
IN OUR -- IDENTIFY DIFFERENT
PATTERNS THAT ARE PRESENT IN THE
GENOME.
SO THIS INTERESTINGLY IS DONE,
COULD BE DONE EXPERIMENTALLY BUT
REALLY DON'T KNOW WHICH
EXPERIMENT TO DO.
THIS IS COMPUTATIONALLY DONE BY
TRYING TO IDENTIFY THE OPTIMAL
NUMBER OF THOSE SIGNATURES THAT
EXPLAIN ALL THE DATA THAT ARE
AVAILABLE TO US.
THE TECHNICAL METHOD BEING USED
AT THIS WAS BEING USED FOR THIS
WAS -- IS CALLED NON-NEGATIVE
MATRIX FACTORIZATION, OTHERS
HAVE BEEN PROPOSED SO WE HAVE
HAVE MUTATION OF SIGNATURES.
THERE'S A WHOLE DATABASE OF
MUTATION OF SIGNATURES, IN OUR
-- AND FOR MANY MUTATION
SIGNATURES WE HAVE SOME GOOD
UNDERSTANDING WHAT THEY MIGHT BE
DOING.
SOME OF THEM WE JUST HAVE WHAT
SORT OF PROCESSES THEY MIGHT BE
ASSOCIATED WITH BUT FOR SOME WE
HAVE NEW CLUE.
WE KNOW THERE ARE PROCESS, HOW
WE'RE GOING TO GO BACK AND
UNDERSTAND MUTATIONAL PROCESSES,
AND HOW WE CAN INFER THE ROLE IN
CANCER DEVELOPMENT.
IN ADDITION TO -- ONCE WE DEFINE
THIS MUTATIONAL SIGNATURE, IF WE
HAVE NEW CANCER GENOME WE CAN
ASK THE QUESTION, WHICH
SIGNATURES ARE PRESENT AND HOW
MANY MUTATIONS CAN BE ATTRIBUTED
TO EACH OF THOSE PROCESSES.
AGAIN, THERE'S A NUMBER OF
METHODS THAT DEVELOP, OTHER
CONTRIBUTED ONE OF THOSE
METHODS, FIRST GROUP ADDRESS
STATISTICAL ISSUE OF INFERRING
THIS APPROACH, THIS SIGNATURE,
SOME APPROACHES BEING BY OTHER
METHODS TOO.
SO WHY WE WOULD LIKE TO STUDY
THE SIGNATURE, GOOD CANCER
(INDISCERNIBLE) FROM IT.
AS SCIENTISTS WE'RE INTERESTED
TO UNDERSTAND CANCER BETTER SO
SCIENTIFIC INQUIRY IS IMPORTANT
HERE.
UNDERSTANDINGMUTATION SIGNATURE
HELPS, PREVENTION AS WELL AS
THERAPY.
DIAGNOSTICS, YOU HAVE SOME
NUMBER OF CANCER PATIENT
EMERGING IN SOME AREA.
THEN WE CAN IDENTIFY WHAT IS THE
NEW MUTATIONAL SIGNATURE
PATIENTS CAN SHARE AND TRY TO
UNDERSTAND WHETHER THERE'S SOME
BEHAVIOR OF SOME MAYBE EXPOSURE
OF MAYBE COMMON TO THOSE
PATIENTS, AND IN THIS WAY HOW TO
OBSERVE THE POTENTIAL NEW
(INDISCERNIBLE) AND PREVENT FROM
ELIMINATED ENVIRONMENT.
INTERESTINGLY THAT ALSO HAS
IMPORTANCE OF THERAPY, SOME
SIGNATURES THAT WE OBSERVE ARE
RELATED TO DNA TO IMPERFECTION
IN DNA REPAIR MECHANISM.
ONE FAMOUS EXAMPLE WHERE ONE OF
THE SIGNATURES HAS BEEN
ASSOCIATED WITH PARTICULAR DNA
DAMAGE, ONCE WE UNDERSTAND THAT
THE SIGNATURE IS (INDISCERNIBLE)
DNA DAMAGE, YET CELL SURVIVE,
SOME WAY THE CELL BYPASSES THIS
DAMAGE USING A DIFFERENT REPAIR
MECHANISM, WE UNDERSTAND ENOUGH
OF BIOLOGY TO SAY, OKAY, WE'LL
TARGET BY DIRECT THIS WAY OF BY
HASSING THE DAMAGE IN THE CELL
AND KILL THE CELL.
THIS IS FOR BREAST CANCER, WHERE
THE PATIENTS HAVE THE -- WHEN WE
OBSERVE MUTATIONAL SIGNATURE,
WHATEVER RESPONSE TO INHIBITOR,
SIMILARLY WE SEE THIS SIGNATURE
IN THOSE PATIENTS RESPONSE TO
PARP INHIBITOR.
FOR UNDERSTANDING THEY MAY HAVE
ALSO TO PREDICT RESPONSE FOR
IMMUNOTHERAPY.
OKAY.
SO WITH THAT, YOU KNOW, AS I
SHOW YOU THE MUTATION,
PROBABILITY DISTRIBUTION, ALL BY
THEMSELVES ARE VERY KNOWN
INFORMATIVE, SO HOW WE CAN
CONNECT MUTATION SIGNATURE TO
MOLECULAR PROCESS TO UNDERSTAND
BETTER WHAT THEY REPRESENT IN
TERMS OF CANCER DEVELOPMENT.
THE WAY WE APPROACH THIS
QUESTION, BY DATA INTEGRATION,
TRY TO UNDERSTAND HOW THIS
MUTATION OF SIGNATURE ARE
RELATED TO GENE EXPRESSIONS IN
THE SAME PATIENTS, HOW THEY ARE
RELATED TO ENVIRONMENT, HOW THEY
MAY BE RELATED TO THOSE DRIVER
MUTATIONS I MENTIONED, KNOWN TO
DRIVE CANCER.
ALSO WHAT THE INTERACTION IS
BETWEEN DNA AND DAMAGE AND
REPAIR.
I'M NOT GOING TO -- WE HAVE FOUR
LINES OF THE STUDY, I'M GOING TO
SAY, YOU KNOW, BRIEFLY DISCUSS
ON THE FIRST THREE.
SO, WHY DO WE EXPECT THAT THERE
WILL BE SOME INTERACTION BETWEEN
THOSE MUTATIONAL SIGNATURES AND
GENE EXPRESSION?
SO GENE EXPRESSION FOR -- I
DON'T KNOW IF YOU HEARD OR NOT,
FOCUSED ON MOLECULAR BIOLOGY, IS
A WAY OF MEASURING THE ACTIVITY
OF GENES IN THE GIVEN CELL.
SO, IF WE -- WHEN WE COLLECT
INFORMATION ABOUT CANCER
SAMPLES, WE DO COLLECT
INFORMATION NOT ONLY ABOUT THE
MUTATION BUT ALSO ABOUT GENE
EXPRESSION, AND OFTEN FOR THE
SAME PATIENTS.
QUITE OFTEN WE HAVE THE TWO
DATASETS, ON ONE SIDE WE HAVE
THIS MUTATIONAL DATA FROM WHICH
WE CAN INFORM DECISION SIGNATURE
SO FOR EVERY PATIENT WE CAN SEE
WHICH SIGNATURES ARE PRESENT IN
THE PATIENT AND WHAT THE
STRENGTH OF THE SIGNATURE IS.
AT THE SAME TIME FOR THE SAME
PATIENTS WE KNOW GENE EXPRESSION
THAT MEANS FOR EVERY SINGLE
GENES WE KNOW WHAT IS THE, YOU
KNOW, WHAT IS THE EXPRESSION OF
THIS GENE ON A GIVEN PATIENT.
NOW WE CAN CONSIDER IF THERE'S A
CORRELATION WITHIN GENE
EXPRESSION.
AND THE STRENGTH OF SIGNATURE.
SO FOR EVERY PAIR GENE AND
SIGNATURE WE CAN LOOK AT ALL OUR
SET OF PATIENTS THAT ARE
AVAILABLE HERE AND SEE IS THERE
A CORRELATION BETWEEN STRENGTH
OF SIGNATURE AND GENE
EXPRESSION.
TO UNDERSTAND THIS TYPE OF
ANALYSIS, TO BE NOISY, IN
SYSTEMS BIOLOGY WE TYPICALLY TRY
TO PULL TOGETHER THINGS THAT
CONNECT SIGNAL FOR THAT
CONNECTED GENE SO THAT WE CAN
STRENGTH OF THE SIGNALS.
FOR EVERY GENE SO FAR WE CAN SEE
WHETHER OR NOT THE GENE IS
CORRELATED WITH GIVEN SIGNATURE,
NOW WE HAVE TO PULL SOME SIGNAL
OUT OF IT.
SO WHAT YOU DO, WE IDENTIFY
GROUP OF GENES THAT HAVE SAME
RELATION WITH SIGNATURE, SO
GENES IN GROUP C THEY ARE ALL
HIGHLY EXPRESSED IN THOSE FIRST
THREE SIGNATURES.
SO ONCE WE HAVE THIS CLUSTERING,
WE CAN LOOK AT EACH OF THESE
GROUP AND SAY WHAT ARE THE GENES
THAT ARE PRESENT THERE, WHAT ARE
THE PATHWAYS THAT ARE RELATED,
WHAT ARE THE PATHWAYS DEPRESSED?
AS AN EXAMPLE OF THIS TYPE OF
ANALYSIS WE LOOK AT THE BREAST
CANCER, AND WE WERE -- SO HERE
AGAIN YOU'LL HAVE THE -- THE
RESPONSE MUTATION SIGNATURE,
OVER HERE I PUT WHAT WE KNOW
ABOUT THE SIGNATURE.
AND THE GROUP OF GENES
CORRELATED WITH THE CORRELATION
WITH THE SIGNATURE SHOWN.
SO ONE INTERESTING OBSERVATION
THAT WAS DONE QUITE EARLY IN THE
ANALYSIS OF THE SIGNATURES IS
TWO SIGNATURES HERE, THEY
ACCUMULATE WITH AGE BUT DO NOT
CORRELATE WITH EACHER.
THAT CLOCK, TWO DIFFERENT CLOCKS
THAT ARE ASSOCIATED WITH EACH OF
THE SIGNATURES.
WE'D LIKE TO UNDERSTAND THE
DIFFERENCE, WHY DOES THIS
SIGNATURE, THESE TWO ACCUMULATE.
THIS HELP US TO SEE THAT,
EVERYTHING IS DIFFERENT,
DIFFERENT CORRELATION WITH FIRST
SIGNATURE AND DIFFERENT GENES
WITH EXPRESSION CORRELATE WITH
OTHER CLOCK-LIKE SIGNATURE.
WE DIVE INTO THE TOOLS THAT
ALLOW US TO SEE WHAT IS THE
FUNCTION OF THOSE GENES, AND WE
SEE THE SECOND SIGNATURE HERE
CORRELATE WITH CELL CYCLE.
WHILE THE FIRST ONE CORRELATE
WITH PARTICULAR ACTIVITY OF
PARTICULAR DNA REPAIR PATHWAY
KNOWN TO BE ACTIVATED IN
RESPONSE TO MANY ENVIRONMENT UP
CLOSE.
NOW WE UNDERSTAND THAT THE FIRST
CLOCK IS CELL CYCLE CLOCK, THE
SECOND CLOCK IS MORE LIKE WALL
CLOCK, A TIME CLOCK.
AND BOTH CLOCKS ACTUALLY ARE
DYSREGULATED BECAUSE IF CANCER
GOES QUICKLY WE HAVE
ACCUMULATION OF THE MUTATION DUE
TO CELL CYCLE.
IF AN INDIVIDUAL IS EXPOSED TO
REALLY A VERY HIGH AMOUNT OF
SOME ENVIRONMENTAL FACTOR WE
LOSE CORRELATION WITH TIME BUT
HAVE CORRELATION WITH THIS
EXPOSURE.
SO, THIS IS ONE WAY WE CAN LINK
THE -- WE CAN LEARN FROM -- BY
DOING JOINT ANALYSIS OF
MUTATIONAL SIGNATURE AND GENE
EXPRESSION, SOME INFORMATION
ABOUT THE SIGNATURES.
WE CAN ALSO -- HOWEVER THIS BLOT
HERE, OUR ANALYSIS CANNOT REALLY
DIFFERENTIATE.
THERE SEEMS TO BE OTHER
SIGNATURES SITTING HERE, SEEMS
TO BE CORRELATED WITH THE SAME
GENE EXPRESSION PREFERENCE.
WE CANNOT JUST LEARN SOMETHING
MORE SPECIFIC ABOUT THEM.
SO WE HAVE TO DEVELOP A NEW
METHOD.
HERE A MEMBER OF MY GROUP CAME
UP WITH AN IDEA WE'RE GOING TO
USE (INDISCERNIBLE) AND USE A
NETWORK THAT A NETWORK WILL
CONTAIN BOTH SIGNATURES HERE
SHOWN IN BROWN, AND GREEN, IN
GREEN, AND WE ARE BASED ON THE
GENE EXPRESSION FOR GENES AND
SIGNATURE, SO SIGNATURES, WE'RE
GOING TO BUILD RELATIONSHIP
BETWEEN THEM TO SEE WHAT
INFLUENCE WHAT.
HE BUILT THIS INFLUENCE GRAPH.
WITHOUT GOING TOO DEEPLY INTO
TECHNICAL ASPECT OF THIS
TRANSFECTION WE'RE ABLE TO DIVE
AND UNDERSTAND THINGS WE
COULDN'T SEE BEFORE.
WE CAN SEE, FOR EXAMPLE, THAT
THERE'S RELATION BETWEEN APOBEC
SIGNATURE, THAT FIRST ONE THE
DOUBLE-STRANDED BREAKS CAUSES
APPEARANCE OF THE OTHER.
WE CAN ALSO FIND OUT THAT
THERE'S A SIGNATURE NUMBER 8
WHICH WAS NOT UNDERSTOOD BEFORE,
NOW WE CAN SEE THIS LINKED TO
DAMAGE IN THE -- OR ACTIVITY OF
PARTICULAR DNA REPAIR PATHWAY,
KNOWN AS NERVE PATHWAYS.
WE HAVE DIFFERENT WAYS,
DIFFERENT METHODS, TO INFER
DIFFERENT PROPERTIES OF THE DATA
AND LEARN NEW ASPECT.
I WOULD LIKE TO TELL YOU ABOUT
HOW WE CAN USE THIS MUTATIONAL
SIGNATURE TO TELL SOMETHING
ABOUT THE RESPONSE TO
ENVIRONMENT.
AND JUST TO SAY A PROJECT THAT
WE STARTED TO UNDERTAKE AT THE
BEGINNING OF THE COVID EPIDEMIC
WERE -- THERE WAS A NUMBER OF
PAPERS THAT WERE TRYING TO
SUGGEST WHAT SMOKING DOES TO
COVID.
THAT SOME OF THEM SUGGESTED
SMOKING HAS PREDICTIVE EFFECT,
SOME SAID THAT JUST THE
OPPOSITE, THAT SMOKING, YOU
KNOW, MAKES IT WORSE, AND DOES
THIS INFERENCE APPEAR TO BE FOR
US AT LEAST VERY KIND OF
ASSOCIATED BASE AND MAYBE
STATISTICALLY NOT JUSTIFIED.
SO, WE GENERALIZE WE USE
MUTATION SIGNATURE AND DATA TO
HELP US UNDERSTAND WHAT SMOKING
DOES TO CANCER, TO LUNGS, WHAT
SMOKING DOES TO LUNG.
AND WHY?
WELL, BECAUSE THE PARTICULAR
LUNG CANCER, AT LEAST CARCINOMA
WE HAVE IN THE DATABASES COLLECT
BY TGA, MOST GET CANCER DUE TO
SMOKING.
NOW, THE DATA COLLECTED FOR
CANCER STUDY OFTEN CONTAINS NOT
ONLY THE TUMOR GENE EXPRESSION
BUT FOR THE KNOWN MUTATION, SO
WHAT IS DIFFERENT YOU HAVE A
COHORT OF PEOPLE WHO HAVE BEEN
EXPOSED TO SMOKING, AND WE HAVE
AN EXPRESSION FOR THOSE
INDIVIDUALS IN THE NORMAL
TISSUE, AT LEAST CONTROL TISSUE,
AND WE CAN PERHAPS UNDERSTAND
HOW THE CHANGES IN NORMAL TISSUE
DEPENDS ON THE AMOUNT OF
SMOKING.
USUALLY PEOPLE SAY THIS IS A
PACK CIGARETTES, OTHER TYPE OF
CIGARETTES, MOST PEOPLE DO NOT,
SO WHAT WE HERE CAN DO IS
LEVERAGE MUTATION SIGNATURE TO
KNOW HOW MUCH AN INDIVIDUAL HAS
SMOKING, THIS MUTATIONAL
SIGNATURE SMOKING SIGNATURE
CORRELATES QUITE WELL WITH
EXPOSURE TO SMOKING.
NOW WE HAVE A SET OF PATIENTS,
WE LOOK AT THEIR NORMAL SHOW FOR
EACH OF THOSE PATIENTS, WE
KNOW -- WE ESTIMATE EXPOSURE TO
SMOKING.
SO THOSE PATIENTS WE ALSO KNOW
BECAUSE THE DATA HAVE BEEN
ALREADY COLLECTED FOR THE
PROPOSED CANCER STUDY, WE LOOK
AT CONTROL TISSUE, WE KNOW GENE
EXPRESSION FOR EACH OF THE
PATIENTS, SO METHODS I JUST
DESCRIBED TO SEE HOW THE GENE
EXPRESSION IS CHANGING BUT WE
NEEDED TO TAKE IT ONE STEP
FURTHER.
LUNG IS COMPLICATED TISSUE,
CONTAINS DIFFERENT CELL TYPES.
AND RECENT ADVANCE OF SINGLE
CELL TECHNOLOGY ALLOWS US TO
TAKE THIS GENE EXPRESSION ON THE
LUNG AND USE THIS IN EXPRESSION
TO IDENTIFY THE PROPORTION OF
DIFFERENT TYPE OF CELL IN LUNGS.
SO, WE ASK THE QUESTION, USING
THIS -- IN THIS SIS CIBERSORT,
THAT CAN GIVE GENE EXPRESSION
DIFFERENT TISSUE TYPES, HOW
SMOKING MAY CHANGE OR UPSET THIS
BALANCE, REPROGRAMMING OF LUNG
TISSUE.
AND AS WE EXPECTED WE COULD
REALLY IDENTIFY USING THIS
APPROACH, WE COULD REALLY SEE
HOW SMOKING INFLUENCES CELL TYPE
COMPOSITION, JUST CELLS, MAIN
CELL TYPES THAT ARE PRESENT IN
LUNG AND HOW CAN BE TRANSFERRED
TO EACH OTHER.
HERE IS JUST OUR, YOU KNOW,
RELATIONSHIP BETWEEN AMOUNT OF
SMOKE AND CHANGES IN CELL TYPE
PROPORTION, WHAT WE SEE STRONGLY
SMOKING INCREASE PROPORTION OF
GOBLET CELLS, THOSE ARE CELLS
THAT PRODUCE MUCUS, THEY SAME
TIME DECREASED PROPORTION OF
TYPE 1 CELLS THAT MAKE THE
RESPONSIBLE GAS EXCHANGE.
SO YOU HAVE MORE MUCUS, LESS
ABILITY TO GAS EXCHANGE, THE
VERY IMPORTANT BALANCE BETWEEN
THE DIFFERENT CELL TYPES IN
LUNGS IS ALTERED BY SMOKING.
OKAY.
SO, ANOTHER EXAMPLE THAT AGAIN
HOW WE CAN DIVE INTO AN EXISTING
DATA AND UNDERSTAND NEW
BIOLOGICS, THIS RELATIONSHIP IS
IN MUTATIONAL SIGNATURE.
REMEMBER MUTATIONAL SIGNATURE TO
IDENTIFY MUTATIONAL SIGNATURE WE
USE THOSE PASSENGER MUTATIONS,
MUTATIONS NOT NECESSARILY
INFLUENCE CANCER, THE DIFFERENCE
BETWEEN SIGNALS AND CANCER
DRIVERS.
AGAIN, TWO WAYS.
WE CAN HAVE THAT MUTATIONAL
PROCESSES, CAN ACTUALLY CAUSE
SPECIFIC CANCER-DRIVING
MUTATIONS, THERE'S SOME EXAMPLES
KNOWN TO BE -- THIS TO BE
HAPPEN.
SINCE OTHER POSSIBILITY AS WELL,
THAT CANCER-DRIVING MUTATIONS,
MUTATION IN CANCER PATIENTS, MAY
ACTIVATE SOME MUTATION.
SO, OUR STUDY FOCUS ON THIS
SECOND ONE.
AND AM GOING TO BRIEFLY TELL YOU
A FEW WORDS ABOUT IT.
SO, WE -- THE APPROACH HERE THAT
WE USED IS BASED ON OUR
EXPERTISE IN SO-CALLED NETWORK
BIOLOGY.
SO WHAT IT DOES, THERE'S AN
EFFORT TO UNDERSTAND HOW VARIOUS
GENES ARE RELATED TO EACH OTHER.
USING DIVERSE SET OF DATA, YOU
KNOW, PEOPLE INFER THOSE WHAT WE
CALL INTRODUCTION NETWORKS WHICH
SUMMARIZE BASED HOW VARIOUS
GENES INTERACT WITH EACH OTHER.
AND WHY IT'S RELEVANT IS THAT IF
WE SHOW MUTATION IN THIS GENE
KRAS ACTIVATES CERTAIN
SIGNATURES, IF THOSE GENES ARE
CLOSELY INTERACTING WITH EACH
OTHER, MUTATION IN BRAF,
ACTIVATE SAME SIGNATURES.
SO THIS IS IDEA OF NETWORK
BIOLOGY, IS TO NOT LOOK AT GENES
IN ISOLATION BUT LOOK AT THEM AS
A GROUP OF CONNECTED GENES
ASSUMING IF PERTURBANCE,
MUTATION, WAS SEEN IN THIS
PATHWAY IT'S GOING TO HAVE
RELATED EFFECTS.
USING THIS, WE CAN NOW SAY,
OKAY, WE CAN CONSIDER OTHER
PATIENTS, SIGNATURE OF INTEREST,
AND THEN, YOU KNOW, FOLLOW THE
PATIENT FROM -- ACCORDING TO
RESPONSE OF THE SIGNATURE OF
INTEREST.
WE ALSO KNOW THE DRIVER
MUTATIONS IN EACH PATIENT AND WE
ALSO HAVE THIS EXTERNAL
INFORMATION ABOUT THE
INTERACTION NETWORK.
AND NOW WE ASK THE QUESTION,
WERE MUTATIONS IN SUBNETWORKS,
WHETHER THEY ARE PARTICULARLY
LIKELY TO CAUSE THE MUTATION
SIGNATURE.
HERE WHAT WE USE ANOTHER
TECHNIQUE, PREVIOUSLY I
MENTIONED CIRCULATION, HERE IS
ANOTHER TECHNIQUE, INTERLINEAR
PROGRAMMING, WE UTILIZE TO
IDENTIFY THIS NETWORK.
WE CALL IT REALLY FOR CASES
WHERE WE KNOW THAT'S MUTATION OF
SIGNATURES IS CAUSED BY
PARTICULAR DRIVER MUTATION LIKE
THE SAME SIGNATURE THAT I
MENTIONED AT THE VERY BEGINNING,
COMBINATION, MUTATION IN BREAST
CANCER KNOWN TO BE CAUSED BY
BRCA1, BRCA2, SO WE CORRECTLY
INFERRED THAT BUT ALSO INFERRED
POTENTIAL CAUSAL MUTATION FOR
OTHER SIGNATURE AS WELL, AND WE
ALSO OBSERVED THAT, BUT SOME OF
THOSE GENES ARE ALSO PICKED UP
BY EXPERIMENTAL STUDIES, SO THEY
ARE GOOD CANDIDATES TO INDEED BE
DRIVERS OF THOSE MUTAGENIC
CAUSES.
LAST I WANT TO MENTION I'M NOT
GOING TO GO INTO THIS AT ALL.
WE ALSO LOOKED A INTERACTION
BETWEEN DNA DAMAGE AND REPAIR
NAMELY WE SEE THAT REALLY WHAT
COMES AT THE END AS A MUTATION
IS PROPOSITION OF TWO PROCESSES,
ONE IS THAT WE HAVE WHATEVER DNA
DAMAGE HAPPEN, BUT ALSO WHATEVER
WE MAY HAVE DEFICIENCY IN DNA
REPAIR, AND THOSE TWO PROCESSES
ARE NOT INDEPENDENT AND WE NEED
MODELS SO WE'VE BEEN LOOKING AT
THAT AS WELL.
SO I'LL SKIP THIS ONE.
AND JUST TO -- I THINK A GOOD
TIME TO SUMMARIZE.
I PROPOSE DISCUSS ALGORITHMIC
METHODS TO STUDY INTERACTIONS OF
SIGNATURES, VARIOUS PROCESSES OF
GENE EXPRESSION.
HERE WE SHOW HOW SIGNATURES CAN
BE COMBINED AND HELP US
UNDERSTAND IMPACT OF ENVIRONMENT
ON SHOW OF INTEREST, HOW THEY
CAN BE USED TO SEE RELATIONSHIP
BETWEEN CANCER DRIVER MUTATIONS
AND IMMERSIONS OF PARTICULAR
MUTATIONAL PROCESSES.
THERE IS ALSO INTEREST IN
UNDERSTANDING HOW THOSE
MUTATIONAL PROCESSES APPEAR IN
CANCER EVOLUTION, SOMETHING
WE'RE INTERESTED, BUT AREAS
TO -- ALSO WHAT I MENTION IS
UNDERSTANDING AND DEVELOP MORE
COMPLICATED MODEL THAT WILL
CAPTURE INTERACTION BETWEEN DNA
DAMAGE AND REPAIR.
IN CONCLUSION I HOPE I CONVINCED
YOU THAT THE JOINT ANALYSIS OF
DATA BRINGS US AN IMPORTANT AND
PERHAPS SURPRISING INFORMATION
SO SOMETIMES IF YOU THINK ABOUT
IT, YOU HAVE A QUESTION, YOU MAY
DIG IN AND FIND THE DATA ALREADY
COLLECTED, AT LEAST CAN GIVE YOU
THE FIRST DIG INTO THE QUESTION
THAT THIS FIRST SET OF
HYPOTHESIS AS YOU CAN SEE IN OUR
UTILIZATION OF NORMAL TISSUE IN
CANCER STUDIES TO UNDERSTAND HOW
SMOKING CAUSES TISSUE
REMODELING.
AND OUR CURRENT WORK WE STUDY
MUTATIONAL SIGNATURE IN TERMS OF
DRUG RESPONSE, ESPECIALLY IN
IMMUNOTHERAPY, AND ALSO LOOKING
AT BEYOND MODELS THAT I
PRESENTED, ALSO IN MACHINE
LEARNING APPROACHES, ESPECIALLY
IN DRUG RESPONSE, TRYING TO
UNDERSTAND WHETHER WE CAN TAKE
THIS DATA, USING MATHEMATICAL
METHODS TRY TO IDENTIFY WHETHER
THERE'S SOME PREFERENTIAL ORDER
OF SIGNATURES AS THEY APPEAR AS
CANCER DEVELOPS.
AND I'D LIKE TO AGAIN
ACKNOWLEDGE MY LAB MEMBERS, NET
WOK OF GENES AND SIGNATURES, JAN
WAS INVOLVED IN THIS STUDY OF
INTERACTION BETWEEN DNA DAMAGE
AND REPAIR.
SHE IS LOOKING INTO TUMOR
EVOLUTION, SINGLE CELL DATA, AND
ERMIN LOOKING AT WORK ON THIS
RELATIONSHIP BETWEEN SMOKING AND
CELL TYPE COMPOSITION, REFINING
METHOD FOR CELL TYPE
COMPOSITION.
AND ZIYNET JOINED RECENTLY,
INTERESTED IN APPLYING MACHINE
LEARNING TO SEE HOW WE CAN
COMBINE MUTATIONAL SIGNATURES,
CANCER DRIVERS, GENE EXPRESSION,
AND OTHER DATA TO STUDY DIRECT
RESPONSE ESPECIALLY IN
IMMUNOTHERAPY.
I WOULD LIKE TO ACKNOWLEDGE THE
GROUP MEMBERS THAT CONTRIBUTED
TO THIS WORK, OPTIMALIZE RNA
VACCINES, REBECCA IN START-UP
COMPANY, ARIELLA, NOW A GRADUATE
STUDENT, AND DAMIAN AN
INVESTIGATOR IN WARSAW AND MY
COLLABORATORS.
THANK YOU SO MUCH FOR YOUR
ATTENTION.
>> OKAY.
WONDERFUL.
THANK YOU SO MUCH FOR SHARING
YOUR WORK WITH US.
IT'S QUITE AN IMPRESSIVE BODY OF
WORK.
I'D LIKE TO WELCOME TWO OF OUR
BOARD MEMBERS TO FACILITATE THE
CONVERSATION WITH YOU.
I'D LIKE TO ASK DR. OGUNYEMI AND
DR. NANCY SMIDER TO JOIN THE
CONVERSATION.
>> THANKS.
THIS IS NANCY SMIDER.
THANK YOU FOR YOUR AMAZING
PRESENTATION.
I PERSONALLY FIND YOUR WORK
REALLY INTERESTING AND ENGAGING.
I ALSO WANTED TO THANK YOU FOR
PRESENTATION THAT MADE YOUR WORK
ACCESSIBLE TO THOSE OF US NOT
DEEP SPECIALISTS IN THIS AREA
WHATSOEVER.
I DO HAVE A FEW QUESTIONS FOR
YOU, BEFORE I ASK MINE I'D LIKE
TO INVITE LOLA TO INTRODUCE
HERSELF, MAKE COMMENTS AND ALSO
TO OPEN IT UP TO ANY QUESTIONS
FROM THE GROUP FIRST AS WELL.
>> I FOUND YOUR WORK
INTERESTING.
I HAVE QUESTIONS BUT AS NANCY
SAID WE CAN OPEN TO THE GROUP
FIRST AND THEN ASK OUR
QUESTIONS.
ARE THERE ANY QUESTIONS FROM THE
GROUP?
DR. CIMINO.
>> I'M WONDERING HOW -- YOU
KNOW, WHAT POPULATIONS WERE THAT
WERE SAMPLED, WHETHER THERE
MIGHT HAVE BEEN BIAS IN DATA
COLLECTION, YOU KNOW, CONCERNED
ABOUT THAT THESE DAYS?
>> YES, AND THIS IS EXCELLENT
QUESTION.
AND THERE'S DEFINITELY BIAS IN
THE POPULATION.
OKAY, WE DON'T ALWAYS KNOW THE
DISTRIBUTION OF THE POPULATION.
SOMETIMES WE DO, AND FOR SOME
STUDY WE DO, WE'RE AWARE THAT
EUROPEAN POPULATION IS
OVERREPRESENTED.
THIS IS REALLY IMPORTANT IN THIS
TYPE OF STUDIES BECAUSE WE KNOW
EVEN FROM EUROPEAN POPULATIONS
HOW NON-UNIFORM CANCER DRIVERS
ARE, ASHKENAZI JEWISH HAVE MORE
BRCA MUTATION, SOMETIMES THERE
ARE MORE DRIVER MUTATIONS THAT
AFFECT OTHER POPULATION.
I THINK THIS IS IMPORTANT
QUESTION.
AND THE DATA HAVE BEEN
COLLECTED, YOU KNOW, YEARS AGO,
AND I THINK NOW WE'RE TRYING TO
FILL THIS GAP AND BE MORE
UNBIASED IN THE PATIENT
POPULATION.
BUT YES, THIS IS AN ISSUE THAT
NEEDS TO BE ADDRESSED, LOOKS
LIKE WE BEGIN TO ADDRESS IT.
AS A COMMUNITY.
>> RICHARD?
>> THANKS, THAT WAS A REALLY
INTERESTING PRESENTATION.
I'M WONDERING CAN THESE
MUTATIONAL SIGNATURES BE USED TO
SOMEHOW DISTINGUISH BETWEEN
DRIVER AND PASSENGER MUTATIONS?
IS THAT POSSIBLE?
>> HMM.
IT ANTI-BEEN USED THAT WAY,
LET'S PUT IT THIS WAY.
IT'S ASSUMED MUTATIONAL
SIGNATURE ARE REALLY COMPOSED OF
(INDISCERNIBLE) MUTATIONS.
THEY CAN BE USED FOR, TO SEE AND
THIS IS SUCCESSFULLY DONE IN NOT
TOO MANY CASES, IS THAT THERE'S
CERTAIN DRIVER MUTATIONS THAT
ARE OVERREPRESENTED IN THE
POPULATIONS.
FOR EXAMPLE, IT'S SHOWN APOBEC
HAVE A PARTICULAR MUTATION, THIS
IS UNDERSTOOD THAT THIS IS
BECAUSE APOBEC IS AN ENZYME THAT
IS ACTIVATED DURING IMMUNE
RESPONSE, ACTUALLY THE CONCEPT
THAT IT'S RELATED TO IS VIRAL OR
IN ORIGIN MAY BE TARGETED, YOU
KNOW, TO MUTATION, TARGETED BY
APOBEC.
BUT OTHER THAN STATISTICAL, YOU
KNOW, REALLY NEED TO HAVE EVEN
CANCER TUMOR TO SEE WHERE
MUTATION HAPPEN BECAUSE
OTHERWISE MUTATION BE DIFFERENT
IN EVERY INDIVIDUAL CELL TYPE,
BASED ON FREQUENCY I DON'T THINK
SO, THAT HELPING TO IDENTIFY.
>> OKAY.
I DON'T SEE ANY OTHER HANDS UP
SO I'LL ASK MY QUESTION.
THAT'S SOMETHING THAT
PARTICULARLY WAS OF INTEREST TO
ME.
SO I WAS WONDERING IF YOU COULD
DESCRIBE A LITTLE BIT MORE
ESPECIALLY FOR THOSE THAT DON'T
HAVE A BACKGROUND IN THIS, THE
ROLE THAT YOU SEE MUTATIONAL
SIGNATURES PLAYING IN ASSESSING
IMMUNOTHERAPY STRATEGIES.
>> OKAY.
SO, NOT TOO MANY METHODS TO
APPROACH AND TO UNDERSTAND WHICH
PATIENT WILL RESPOND TO
IMMUNOTHERAPY.
ONE, FOR EXAMPLE, ONE KNOWN
FACTOR IS THAT THE NUMBER OF
SOMATIC MUTATIONS IS A RESIDENT
PREDICTOR OF THE RESPONSE, AND
OF COURSE, YOU KNOW, THE NUMBER
OF SOMATIC MUTATIONS NOW WE SAY,
OKAY, DOESN'T MATTER WHETHER THE
SOMATIC MUTATION, PERHAPS IT
MATTERS SOMATIC MUTATION,
SOMATIC SIGNATURE, NOW
APPRECIATED THERE'S AN
ASSOCIATION BETWEEN STRENGTH OF
APOBEC MUTATION OF SIGNATURE AND
RESPONSE TO THERAPY IN SEVERAL
CANCER TYPES.
THERE'S ALSO AN INTERESTING --
TO LOOK LIKE IT'S BEEN EXPOSURE
TO SMOKING SIGNATURES ACTUALLY,
CORRELATED WITH THE RESPONSE TO
IMMUNOTHERAPY.
AND BY AGGREGATING THE DATA, WE
CAN ALSO SEE THAT, AGAIN,
LOOKING AT THIS, SOMETHING
ACTUALLY REVIEWER POINTED TO US
WHEN LOOKING AT THE RELATIONSHIP
BETWEEN GENE EXPRESSION AND
SIGNATURE, SMOKING SIGNATURE,
DON'T WE SEE RELATIONSHIP
BETWEEN SMOKING SIGNATURES AND
EXPRESSION OF THE GENES INVOLVED
IN IMMUNE RESPONSE.
WE DID SEE THAT KIND OF EXPLAIN
WHY SMOKING MAY, YOU KNOW, THE
SMOKING MIGHT INCREASE
IMPROVING -- THAT -- THAT
PATIENTS WHOSE CANCER IS DUE TO
SMOKING MAY RESPOND TO
IMMUNOTHERAPY AS OPPOSED TO
CANCER THAT IS NOT DUE TO
SMOKING BECAUSE THERE'S A
RELATIONSHIP BETWEEN SMOKING AND
INCREASE OF EXPRESSION OF
PARTICULAR GENES THAT RESPOND TO
THERAPY, SO THIS IS -- THOSE ARE
RIGHT NOW WE HAVE LIKE SIMPLE
EXAMPLES, INDIVIDUAL EXAMPLES.
WHAT WE HOPE IS TO COLLECT
ENOUGH DATA, CONNECTED WITH THE
APPROACHES TO SEE WHETHER WE CAN
BUILD A PREDICTIVE MODEL.
WHAT WOULD BE REALLY INTERESTING
IF WE CAN COLLECT, YOU KNOW,
USING THE DATA OFTEN USED IN
CLINICS SO SO CALLED IMPACT DATA
WHICH WE HAVE A LOT OF PATIENTS
THAT FOR WHICH THIS DATA IS
PROVIDED AND SEE WHETHER EVEN IF
IT'S A SMALL NUMBER OF GENES
EVEN WE HAVE SMALL NUMBER OF
MUTATIONS THAT WE CAN USE,
COLLECT THIS DATA TOGETHER, SO
THAT WE CAN ALSO GET SOME
INFORMATION EVEN FROM THE
SMALLER SAMPLE.
THIS IS HOW WE SEE HOW WE CAN
USE THIS TO OUR SIGNAL THERAPY,
BUT ALSO FOR ALL THE MUTATION
SIGNATURES OCCUR BECAUSE THERE'S
DAMAGE IN DNA REPAIR.
AND WE LIKE THE EXAMPLE OF THE
BREAST CANCER.
AND YET THERE'S DAMAGE DNA
REPAIR, IT'S MULTIPLYING AND WE
HAVE CANCER.
SO THE IDEA OF THEM NOW HOW WE
CAN -- IF WE UNDERSTAND WHAT
DAMAGE IS RELATED TO MUTATIONAL
SIGNATURE, WE USE THE CELL
CONCEPT OF EPISTASIS, TRY TO SEE
WHICH IS THE DNA REPAIR PATHWAY
THAT IS ABLE TO BYPASS THE ONES
DAMAGED, DAMAGE PATHWAYS, THAT'S
ANOTHER WAY OF HOPING THAT WE
CAN -- IF WE CAN DO THAT, THEN
WE HAVE TARGET OF THE CELLS,
CANCER CELL, AS OPPOSED TO
ORGANISM, TWO MAIN TO IMPROVE
THERAPY.
>> THANK YOU.
>> I'LL ASK ONE OF MY QUESTIONS.
IT'S RELATED.
SO, STEPPING OUTSIDE OF YOUR
DEEP DAY-TO-DAY WORK YOU DO,
WHAT WOULD YOUR RECOMMENDATIONS
BE ON HOW TO INFUSE THE USE OF
MUTATIONAL SIGNATURES FOR
DIAGNOSTIC PREVENTION AND
TREATMENT IN PRACTICE DOMAIN AND
HOW CAN WE ACCELERATE THAT?
>> SO I THINK THIS IS BEING DONE
BY VARIOUS GROUP REALLY, MAKE
SURE THAT WE DO SEQUENCE A LOT
OF CANCER GENOMES AND COLLECT A
LOT OF INFORMATION THAT SHOULD
INCLUDE EXACTLY THE LOCATION,
ETHNICITY, DIET, AND USAGE OF
ANY DRUGS, BECAUSE ALL OF THOSE,
EACH OF THOSE CAN INVOLVE A
SPECIFIC PROCESS.
THE EXAMPLE, MUTATIONAL
SIGNATURES, BE HELPFUL TO
IDENTIFY SYSTEM CHANGE IN --
LIKE USAGE OF SYSTEM, NOT SO
MUCH DRIVE BUT ACCESS SOME TEA
OR HERBS CAUSES PARTICULAR
MUTAGENIC PROCESS, SO IT'S
REALLY IMPORTANT TO KNOW
PEOPLE'S HABITS, PEOPLE'S
ETHNICITY, PEOPLE'S GEOGRAPHIC
LOCATION, SO THAT WE CAN
WHENEVER WE SEE A NEW MUTAGENIC
PROCESS EMERGING WE CAN LINK IT
TO POTENTIAL CAUSES.
AND, YOU KNOW, IF THIS CAUSES
POPULATION WE NEED TO GIVE
POPULATION NEED TO BE TESTED FOR
EMERGENCE OF MUTATION
SIGNATURES, EMERGENCE OF CANCER,
IF THIS IS TO DIET, IF WE CAN
PINPOINT WE CAN ELIMINATE, I
SHOULD SAY, GIVEN, YOU KNOW,
MUTAGEN FROM DIET.
THIS IS LIKE -- I THINK THIS IS
A VERY IMPORTANT AND POTENTIALLY
STRONG INFORMATION ABOUT HOW
MUTAGENIC PROCESS CAN DIFFER IN
INDIVIDUAL GROUPS AND ON MANY
DIFFERENT LEVELS.
>> THANK YOU.
>> DO WE HAVE OTHER QUESTIONS?
>> SO BESIDES CANCER DO YOU SEE
ANY POSSIBLE APPLICATION, EVEN
IN THE NEAR TERM, ABOUT USING
THESE METHODS FOR RARE DISEASES
AND SOME OF THE UNDIAGNOSED
DISEASES?
>> SO, ONE IMPORTANT -- SO THIS
REASON WHY THE PROCESS,
MUTATIONAL SIGNATURE RESEARCH IS
EVOLVING MOSTLY AROUND CANCER,
IF WE DO NOT -- SO IF WE
DON'T -- IF WE GO OUTSIDE OF
CANCER TO DIFFERENT TYPE OF
TISSUE, IT'S VERY DIFFICULT TO
CALL MUTATIONS.
SO WE WILL NEED TO MOVE
SINGLE-CELL RESOLUTION.
NOW WITH SINGLE CELL TECHNOLOGY,
WE CAN REALLY SEE WHAT
MUTATIONAL PROCESSES ARE PRESENT
IN HEALTHY TISSUE, TISSUE NOT
HAVING CANCER.
SO IN CANCER WE WE HAVE THIS
CANCER CHANGING CELL AND
WHATEVER TUMOR CELL MUTATION
THAT TUMOR CELL HAS IS BEING
AMPLIFIED IN ALL THESE DAUGHTER
CELLS, WE HAVE AMPLIFICATION OF
MUTATIONAL SIGNAL.
RIGHT NOW MOSTLY FOCUSED ON
CANCER OR GERMLINE MUTATION, CAN
ALSO APPRECIATE THERE IS SOME
MUTATIONAL SIGNATURES THAT CAN
BE INFERRED SOMETHING MUTATION
IN THE POPULATION THE GERMLINE.
TO LOOK AT OTHER, TO THE OTHER
RARE DISEASE, WE WILL HAVE TO GO
AND START TO INCREASE THE
SEQUENCING THAT IS BASED ON
SINGLE CELL WHERE WE CAN CALL
LOCATION AT SINGLE CELL LEVEL,
THERE'S NO SYNCHRONIZATION
BETWEEN MUTATION AT THE CELL
LEVEL UNLESS THERE'S A CANCER OF
GERMLINE, I HOPE THIS IS GOING
TO HAPPEN, AND WE WILL
UNDERSTAND, YOU KNOW, AT LEAST
SOME OF THE MOSAIC DISEASES OR,
YOU KNOW, RELATED TO THE
MUTATIONS THAT ARE SOMATIC
MUTATIONS, BUT ARE IN VARIOUS
(INDISCERNIBLE) NOT GERMLINE
MUTATION..
GERMLINE MUTATION WE CAN STUDY
NOW.
>> I HAVE MORE OF A PROCESS
QUESTION FOR YOU.
WHAT HAS BEEN THE BIGGEST
CHALLENGES YOU'VE ENCOUNTERED AS
YOU'VE PURSUED THIS WORK AND HOW
MIGHT NLM CONTINUE TO HELP
REDUCE SOME OF THAT FRICTION FOR
THE TYPE OF RESEARCH THAT YOU'RE
ENGAGED IN?
>> SO, WE ARE MOSTLY
COMPUTATIONAL BIOLOGY GROUP, OUR
RESEARCH IS DRIVEN OF COURSE IN
MOSTLY IMPORTANT QUESTIONS BUT
ALSO BY AVAILABLE DATA.
SO, SOME OF IT IS COLLABORATION
WITH OUR EXPERIMENTAL COLLEAGUES
THAT HAVE SPECIFIC DATA AND
WOULD LIKE COLLABORATION TO
UNDERSTAND, BUT A LOT IS BASED
ON THE PUBLIC DATA.
SO, I THINK THAT REALLY IT'S
IMPORTANT FOR US TO, YOU KNOW,
HAVING ACCESS TO LARGE SET OF
UNBIASED DATA, THE DATA IS THAT,
YOU KNOW, OF QUESTION, DATA
MIGHT BE BIASED IN DIFFERENT
WAY, BIAS TO UNDERSTAND THOSE
BIASES, SO IT'S IMPORTANT TO
HAVE A LOT OF DATA, HAVE A LOT
OF DATA FROM THE SAME INDIVIDUAL
PREFERABLY, IT'S IMPORTANT IN
STUDY DESIGN TO BE FORWARD
THINKING AND THINK, YEAH, WE MAY
BE INTERESTED IN MUTATION BUT IN
FUTURE WE MAY WANT TO HAVE GENE
EXPRESSION, MAY WANT TO HAVE
METHYLATION, MAY WANT TO HAVE SO
MANY OTHER INFORMATION THAT
WOULD BE IMPORTANT SO THE MORE
INFORMATION WE HAVE ABOUT
INDIVIDUAL PATIENTS, THIS IS THE
MOST USEFUL FOR US, BECAUSE IT'S
EASIER TO LINK DIFFERENT TYPE OF
DATA TOGETHER IF THEY ARE BEING
COLLECTED FROM THE SAME
INDIVIDUALS.
I THINK THIS IS LIKE
AVAILABILITY OF DATA, QUALITY OF
DATA, EXTENT OF DATA AS
DICTATING WHAT WE CAN DO AND
NOT.
>> THANK YOU FOR THAT.
OTHER QUESTIONS?
OKAY.
>> I'LL TAKE IT FROM HERE.
I WANT TO THANK YOU FOR SHARING
YOUR WORK AND WORK OF YOUR
GROUP.
THIS IS A REALLY GREAT
CONVERSATION, AND IT'S EXCITING
TO SEE WHAT'S POSSIBLE HERE.
I WANT TO THANK DOCTORS OGUNYMI
AND SMIDER.
>> THANK YOU FOR THE ATTENTION
AND WONDERFUL QUESTIONS.
IT'S A PLEASURE TO HAVE DR.
GEORGE MENSAH, DIRECTOR OF
CENTER FOR TRANSLATION RESEARCH
AND IMPLEMENTATION SCIENCE, AT
THE NATIONAL HEART, LUNG AND
BLOOD INSTITUTE, PROVIDES
STRATEGIC OVERSIGHT FOR THE
PROGRAMS AND MANAGES LATE STAGE
TRANSLATION RESEARCH AN
IMPLEMENTATION SCIENCE EFFORTS.
AS WELL AS ITS DIVERSE RESEARCH
PORTFOLIO.
HIS AREAS OF EXPERTISE ARE IN
CARDIOVASCULAR MEDICINE, PUBLIC
HEALTH, SCIENCE, COMMUNITY
ENGAGED RESEARCH, HEALTH
DISPARITIES RESEARCH, GLOBAL
HEALTH RESEARCH.
DR. MENSAH IS A CLINICAL
SCIENTIST, TRAINED IN INTERNAL
MEDICINE, SUBSPECIALTY OF
CARDIOVASCULAR DISEASE,
PROFESSIONAL EXPERIENCE INCLUDES
25 YEARS OF PUBLIC SERVICE
BETWEEN THE V.A., CDC, NIH.
HE IS HERE TODAY TO PRESENT ON
THE NIH COMMUNITY ENGAGEMENT
ALLIANCE, CEAL PROGRAM.
WELCOME, DISC, ALREADY MENSA.
>> THANK YOU, KRISTI.
I'M GOING TO SHARE MY DESKTOP.
LET ME KNOW IF YOU SEE MY
SCREEN.
>> I DO.
EVERYTHING LOOKS GREAT.
>> THANKS FOR INVITING ME TO
SPEAK WITH YOU THIS AFTERNOON.
I'M VERY GRATEFUL FOR -- IT'S
TRULY A PRIVILEGE FOR ME AND A
PERSONAL PLEASURE TO HAVE THE
OPPORTUNITY TO BE WITH YOU
TODAY.
I WANT TO RECOGNIZE MY
COLLEAGUE, DR. PALTOOL WHO
ENCOURAGE IMMEDIATE TO ACCEPT
BUT ACCEPTING WAS EASY.
I DON'T KNOW OF WHO WOULD TURN
DOWN THE OPPORTUNITY TO SPEAK
FOR THE BOARD OF REGENTS FOR
THE NLM, A NATIONAL TREASURE.
PERSONALLY I'VE BENEFITED
TREMENDOUSLY FROM THE NATIONAL
LIBRARY OF MEDICINE.
NLM IS A REAL TREASURE THAT'S
BEEN SERVING SCIENCE AND SOCIETY
SINCE 1836, AND EVEN BACK WHEN
IT WAS ONLY A COLLECTION OF
BOOKS AND JOURNALS TO DELIVER
REMARKABLE 21ST CENTURY CURES
LIBRARY OF TODAY, IT'S BEEN A
TRUE GEM.
I LIKE THIS IMAGE HERE, IT
REMINDS ME ALMOST 40 YEARS AGO
WHEN I WAS A MEDICAL INTERN,
EVERY WEEK, ESPECIALLY WEEKENDS,
I WOULD GO TO A SPECIAL ROOM AT
CORNELL, WHERE WE HAD A WORK
STATION, YOU WOULD LOAD A CDROM
AND GET TO ACCESS ALL THE MOST
RECENTLY PUBLISHED MEDICAL
LITERATURE.
THE FIRST THREE SCIENTIFIC
PAPERS I PUBLISHED COULD NOT
HAVE BEEN DOWN WITHOUT THE
SUPPORT OF DATA ACCESS TO
NATIONAL LIBRARY OF MEDICINE.
EVEN TODAY, I CAN SAY HONESTLY
THAT NOT A DAY GOES BY WHEN I
DON'T GO TO PubMed, AT LEAST
ONCE OR TWICE A DAY.
SO THANK YOU.
IT'S REALLY REMARKABLE THAT THE
TRUST THAT YOU BUILT WITHIN OUR
PROFESSION IN TERMS OF WHAT YOU
SHARE AND PROGRAMS YOU HAVE
REALLY DESERVE PRAISE.
SO AS I THOUGHT ABOUT ALL OF
THIS, IN PUTTING MY PRESENTATION
TOGETHER, I THOUGHT OF THE
CENTRAL QUESTION THAT I HOPE WE
CAN CONTEMPLATE THROUGHOUT THE
LECTURE AND WOULD LOVE TO HEAR
YOUR THOUGHTS, YOUR GUIDANCE,
HOW TO MOVE FORWARD.
THE QUESTION IS THIS.
HOW DO WE MAKE SURE THAT AS WE
DEVELOP THE INNOVATION, THE
REMARKABLE TECHNOLOGY, THE
COMPUTATIONAL CAPABILITIES OF
21ST CENTURY CURES LIBRARY HOW
DO WE MOVE TO NEEDS OF
COMMUNITIES TRADITIONALLY
UNDERSERVED, AND
DISPROPORTIONATELY IMPACTED BY
DISEASES AND RISKS THAT WE
PERFORM RESEARCH ON.
THAT IS THE CENTRAL QUESTION
THAT RUNS THROUGH WHAT I WILL
SHARE WITH YOU THIS AFTERNOON.
AND I WOULD BEGIN WITH GIVING
YOU A LITTLE BIT OF HISTORY OF
NIH COMMUNITY ENGAGEMENT
ALLIANCE WE CALL CEAL.
AND SHARE WHERE WE ARE TODAY IN
TERMS OF PROGRAMMING AND WHAT
THE FUTURE LOOKS LIKE, AND THIS
AUDIENCE IS VERY MUCH AWARE OF
THE CRUCIAL ROLE DATA DIENS AND
OF -- DATA SCIENCE AND
INFORMATICS PLAY.
I WOULD LIKE TO MAKE A STRONG
CASE FOR ENSURING THE
CAPABILITIES WE BUILD IN THESE
AREAS CAN REALLY HELP
COMMUNITIES TO THRIVE.
THAT'S WHAT I SEE FROM POTENTIAL
STRATEGIC ALLIANCE OF CEAL AND
NATIONAL LIBRARY OF MEDICINE.
SO, TO BEGIN WITH A LITTLE BIT
OF HISTORY, IT WAS ON A SATURDAY
AFTERNOON, JULY 4, 2020, WHEN
DR. FRANCIS COLLINS, OUR FORMER
NIH DIRECTOR, CONVENED HIS
LEADERSHIP GROUP TO EXPLORE
ADDITIONAL STEPS TO MAKE SURE
THAT ADVANCES WERE MAKING AND
RESPONSES TO COVID-19 WERE
APPROPRIATELY INCLUSIVE AND
DIVERSE.
NOW, IT WAS A NATIONAL HOLIDAY.
IT WAS A SATURDAY.
AND YET HE CALLED A MEETING
BECAUSE WE HAD A SERIOUS PROBLEM
ON OUR HANDS.
WE HAD DEVELOPED A REMARKABLE
VACCINE, 90% EFFICACY, AND
PEOPLE WHO NEEDED VACCINE THE
MOST WERE VERY UNWILLING TO
PARTICIPATE IN THE CLINICAL
TRIAL TO PROVE ITS
EFFECTIVENESS.
DR. COLLINS IDENTIFIED TWO OF
OUR I.C. INSTITUTE AND CENTER
DIRECTORS, DR. GARY GIBBONS,
DIRECTOR FOR NATIONAL HEART,
LUNG AND BLOOD INSTITUTE, AND
DR. ELISEO STABLE-PEREZ,
DIRECTOR OF THE NATIONAL
INSTITUTE OF MENTAL HEALTH AND
HEALTH DISPARITIES, CO-CHAIRS.
WITHIN A WEEK OF THAT MEETING WE
CONVENED THE FIRST COMMUNITY
ENGAGED ROUNDTABLE SO WE COULD
LISTEN TO THE COMMUNITIES AND
HEAR MANY OF THE CHALLENGES THAT
WE FACE AND WHY MANY OF THEM
DIDN'T WANT TO PARTICIPATE IN
THE CLINICAL TRIAL INVOLVING A
LIFE-SAVING VACCINE.
HE FOLLOWED UP WITH ANOTHER
LISTENING SESSION, AND JULY 22
WENT BACK TO DR. DR. COLLINS
TO SHARE WHAT WE LEARNED.
THOSE WERE NOT THE ONLY TWO
LISTENING SESSIONS WE HAD.
AS I SHOW YOU IN THIS FIGURE,
THE RED TRIANGLES SHOW
INDIVIDUAL TIMES WHEN WE WENT
BACK AND HELD A FORUM SO WE
COULD MAKE SURE WE WERE DOING
WHAT WE HEARD AND CONTINUED TO
LISTEN TO GUIDE, CRUCIAL
COMPONENTS OF OUR WORK.
THIS SLIDE SHARES A SUMMARY OF
SOME KEY MESSAGES WE HEARD.
TRUST IS EXTREMELY IMPORTANT AND
FOUNDATIONAL IN COMMUNITY
ENGAGEMENT.
WE ALSO LEARNED THAT COMMUNITY
ENGAGEMENT IS NOT JUST OUTREACH,
NOT NIH COMING TO TELL
COMMUNITIES WHAT THEY NEEDED TO
DO BUT NIH COMING AND LISTENING
AND WORKING WITH THE COMMUNITIES
AND CO-CREATING STRATEGIES THAT
WOULD PROMOTE THEIR HEALTH.
WE ALSO HEARD THAT WE NEEDED TO
MEET COMMUNITIES WHERE THEY ARE,
ALL COMMUNITIES ARE DIFFERENT
LEVELS OF ORGANIZATIONAL
READINESS FOR CHANGE, WITHOUT
TAKING THAT ACCOUNT WE'RE NOT
LIKELY TO BE AS HELPFUL AS WE
COULD BE.
SOCIAL AND STRUCTURAL DETERMINE
DETERMINANTS WERE IMPORTANT AND
WHEN WE'RE DESIGNING A CLINICAL
TRIAL, WHEN WE HAVE THE RESULTS,
AND MAKING SURE THAT THEY
BENEFITED FROM RESEARCH RESULT.
THE LAST TWO ARE RELEVANT TO
THIS DISCUSSION BECAUSE THE
OPPORTUNITY TO SPREAD
TRUSTWORTHY INFORMATION AND
OPPORTUNITY FACILITATE ACCESS TO
HEALTH DATA SO THESE COMMUNITIES
WOULD THRIVE, THAT'S SOMETHING
THAT NLM CAN PLAY A CRUCIAL ROLE
IN.
SO HERE IS OUR CHARGE.
WE'RE NIH.
SO WE CONDUCT RESEARCH, AT THIS
TIME IT WAS URGENT RESEARCH, NOT
WAITING FIVE YEARS TO SEE THE
OUTCOME, ALMOST IMMEDIATELY
NEEDED TO KNOW WHAT TO DO TO
PROTECT THE MOST LIVES AND
WANTED TO PROMOTE AND FACILITATE
INCLUSION OF DIVERSE RACIAL AND
ETHNIC POPULATIONS IN OUR
CLINICAL TRIAL, AND PARTICULARLY
REFLECTIVE OF POPULATIONS
DISPROPORTIONATELY AFFECTED BY
THE PANDEMIC.
THIS IS OUR MANTRA.
NO MATTER HOW URGENT, WE WERE
TOLD WE ALWAYS NEEDED TO MOVE AT
THE SPEED OF TRUST.
WE DID A FEW THINGS INITIALLY.
WE WANTED TO MAKE SURE THAT
PEOPLE ARE GOING INTO
COMMUNITIES, RECOGNIZING WE
COULDN'T BOIL THE OCEAN, WE
NEEDED TO SELECT THE COMMUNITIES
THAT HAVE GREATEST RISK, HIGHEST
RISING CONFIRMED CASES OF COVID,
WE ALSO WANTED TO MAKE SURE WE
WERE IN COMMUNITIES THAT WERE
HOUSED OR NEAR NIH-FUNDED
CENTERS AND INSTITUTIONS, WHERE
THERE WERE CLINICAL TRIALS,
WHERE WE COULD REFER THEM TO,
AND OTHER NIH ASSETS THAT COULD
BE LEVERAGED.
BUT WE REALLY PLACED OUR
REGIONAL CENTERS PARTICULARLY
GEOGRAPHIC LOCATIONS SO WE COULD
COVER MOST OF THE U.S. AND IN
PARTICULAR COVER THE AREAS THAT
HAD THE HIGHEST RISK, AND
CERTAINLY WANTED TO MAKE SURE
THAT WE ARE ADDRESSING ALL AGES
ACROSS THE LIFESPAN, BOTH MEN
AND WOMEN, AS WELL AS RACE,
ETHNICITY, TAKING RURAL
LOCATIONS ALSO INTO ACCOUNT.
THIS IS A NICE SYNOPSIS OF SOME
OF OUR KEY OBJECTIVES, WHILE
SPONSORING AND SUPPORTING
RESEARCH, WE WANTED TO MAKE SURE
AN EQUALLY IMPORTANT ROLE WAS
BUILDING AND SUSTAINING TRUST AT
RELATIONSHIPS FOR THE COMMUNITY.
AND ENABLING THEM TO BE ABLE TO
BENEFIT AND SHARE IN THE
KNOWLEDGE THAT WAS RAPIDLY
EVOLVING, CERTAINLY BUILDING A
NETWORK THAT COULD BE SUSTAINED,
PROMOTING ACCESS TO THE EXPERTS
WE HAVE AT NIH AND OTHER FEDERAL
AGENCIES, BUT MOST IMPORTANTLY
MAKING SURE THAT WE PROMOTED
TRUSTWORTHY INFORMATION.
THESE ARE THE CORE PRINCIPLES,
SELF-EXPLANATORY, BUT REALLY,
REALLY IMPORTANT THAT WE BE
NIMBLE AND ABLE TO CHANGE,
ADAPT, BASED ON THE NEEDS AND
UNIQUE CHARACTERISTICS OF EVERY
COMMUNITY WE WORKED IN.
I HAVE TO GIVE CREDIT AGAIN TO
THE NATIONAL LIBRARY OF MEDICINE
BECAUSE IN THAT FIRST YEAR,
DURING THOSE CHALLENGING YEARS,
WE HAD A LOT OF HELP FROM A LOT
OF PLACES.
THE NLM WAS ONE.
EVEN ON SOCIAL MEDIA, NLM WAS
TWEETING ABOUT US.
WE REALLY APPRECIATED IT.
ONE WAY OF GETTING THE MESSAGE
OUT.
WE HAVE LISTSERVs THAT GO TO
CLINICIAN-SCIENTISTS, OTHER
SCIENTISTS, PEOPLE WE FUND, BUT
IT MAKES A BIG DIFFERENCE IF
WE'RE GOING TO REACH COMMUNITIES
WHERE THEY ARE THAT WE USE
MULTI-CHANNEL APPROACHES AND
SOCIAL MEDIA WAS ONE.
SO THESE ARE ALL FROM X,
FORMERLY KNOWN AS TWITTER.
WE APPRECIATE THE HELP FROM NLM.
THE FIRST YEAR MOSTLY DEALT WITH
COVID.
DEALT WITH VACCINE HESITANCY AND
MISINFORMATION ABOUT THE
RESEARCH THAT LED TO THE
VACCINE, AND WE THINK WE DID A
REASONABLE GOOD JOB.
WE MANAGED TO HIT THE TARGET
THAT WE HAD SET IN TERMS OF THE
ENROLLMENT IN CLINICAL TRIALS
BUT DID SOMETHING MORE.
ABLE WITH THE SUPPORT FROM ALL
THE I.C.s, INCLUDING NLM, WERE
ABLE TO BUILD AN INFRASTRUCTURE
THAT CAN SERVE AS PLATFORM FOR
FUTURE WORK WITH THE
COMMUNITIES.
AND THAT'S SOME EXAMPLES THAT I
WILL SHARE WITH YOU.
ALL THE WORK IN CEAL WAS REALLIY
TOWARD HEALTH EQUITY.
THE BACKBONE OF THE COMMUNITY
ENGAGEMENT ALLIANCE WAS THE 21
REGIONAL TEAMS THAT WE SUPPORTED
WITH THE CORE PURPOSE PROMOTING
COMMUNITY ENGAGED RESEARCH
THROUGH ACCESS IN DIVERSE
NETWORKS OF COMMUNITY, ACADEMIC,
AS WELL AS RESEARCH
PARTNERSHIPS.
WE HAD MORE THAN A THOUSAND
COMMUNITY PARTNERS, ABOUT 580
SMALL TO MEDIUM SIZED
COMMUNITY-BASED ORGANIZATION,
ACADEMIC HEALTH CENTERS, STRONG
TRACK RECORD OF COMMUNITY
ENGAGED RESEARCH, PARTICULARLY
WORKING WITH UNDERSERVED
COMMUNITIES AND CERTAINLY NOW
STRONG FOCUS ON INFORMATIONAL
RESEARCH, COMMUNITY
INTERVENTIONS WITH SOME BASIS IN
EVIDENCE RATHER THAN
OBSERVATIONAL WORK ALONE.
RECOGNIZING CRUCIAL IMPORTANCE
OF PRIMARY CARE, WE SUPPORTED
TWO TEAMS THAT HAD VERY BROAD
REACH, PARTICULARLY ACROSS
SOUTHEAST AND WESTERN U.S.,
NETWORK OF COMMUNITY ENGAGED
RESEARCH, WITH SEVERAL
ACTIVITIES INCLUDING PATIENT
REGISTRY THAT'S GOING TO EVOLVE
AND INCREASE IN DEPTH.
BUT ALSO CLINICAL TRIALS THAT
IDENTIFY SOCIAL RISK OF THE
COMMUNITIES IN WHICH WE SERVE,
LINKED COMMUNITIES TO
APPROPRIATE SOCIAL SERVICES BUT
ALSO MAKE THE COMMUNITY CLINICAL
LINKAGE FOR THOSE WHO NEED
CLINICAL CARE.
WE BUILT A REPEATABLE
CONSULTATIVE RESOURCE, I'LL
SHARE WHAT WE'VE BEEN ABLE TO DO
IN CEAL WITH THIS EFFORT.
THE WHOLE PURPOSE OF THIS,
COMMUNITY ENGAGEMENT ALLIANCE
CONSULTATIVE RISK SOURCE TO
PROVIDE EXPERTISE FOR CLINICAL
TRIAL AND RESEARCH TEAMS HAVING
DIFFICULTY REACHING UNDERSERVED
COMMUNITIES, SO THE GOAL HERE
WAS TO OPTIMIZE INCLUSIVE
PARTICIPATION ACROSS THE ENTIRE
RESEARCH ECOSYSTEM.
I WANT TO SHOW ANOTHER EXAMPLE
OF THE RESEARCH WE SUPPORT IN
CEAL.
THIS IS A PILOT STUDY THAT WOULD
END I BELIEVE IN SEPTEMBER THIS
YEAR, BUT LOOKING AT HEALTH
KNOWLEDGE MONITORING, DEVELOPING
TAILORED RESPONSES THAT WOULD
TACKLE MUCH OF THE
MISINFORMATION AND
DISINFORMATION THAT WE FEAR.
BUT, AGAIN, THESE ARE ONLY THREE
EXAMPLES, THERE ARE ABOUT FOUR
OTHER KEY EXAMPLES AND SEVERAL
ARE SHOWN HERE IN THE COLORED
CIRCLES.
BLUE ARE THE STATES, 21 TEAMS,
AND INDIVIDUAL CEAL PROGRAMS,
FOR EXAMPLE, IN YELLOW ARE THE
SITES WHERE WE SUPPORT COMMUNITY
IMPLEMENTATION PROGRAM TO
PROMOTE MATERNAL HEALTH.
WE ALSO HAVE IN THE CYAN CIRCLE
ANOTHER COMMUNITY IMPLEMENTATION
PROGRAM CENTERED AROUND
PROMOTING IMPROVED PREGNANCY
OUTCOMES.
YOU ALL ARE FAMILIAR WITH THE
HUGE DISPARITIES THAT WE HAVE IN
MATERNAL MORTALITY AND NEAR
DEATH AND NEAR MISSES.
WE HAVE ANOTHER EFFORT IN
CLIMATE AND HEALTH.
PARTICULAR EFFORT FOCUSED ON
AMERICAN INDIAN AND ALASKA
NATIVE AND HAWAIIAN AND PACIFIC
ISLAND ENHANCEMENT.
AGAIN, THESE PROGRAMS IN
ADDITION TO THE BACKBONE
REGIONAL TEAMS WE SUPPORT.
THIS IS A BRIEF OVERVIEW OF SOME
PRIORITIES AND MAIN SERVICES WE
PROVIDE BUT IMPORTANTLY WE WANT
TO LISTEN AND UNDERSTAND
COMMUNITIES WITH REFERENCE TO
CHALLENGES, THE OPPORTUNITIES,
ALSO ADVANCED COMMUNITY ENGAGED
RESEARCH, WITH PARTICULAR
EMPHASIS ON CHANGING PUBLIC
HEALTH BEHAVIORS, FEBRUARY IS
AMERICAN HEART MONTH.
WE HAVE MORE THAN 75 YEARS OF
OUTSTANDING RESEARCH AROUND THE
RISKS OF HEART DISEASE YET THE
VAST MAJORITY OF LIFESTYLES AND
BEHAVIORS AND ACCESS TO CARE
THAT WOULD LEAD TO IMPROVED
HEART HEALTH WE'RE STILL LAGGING
BEHIND.
SO THE PLATFORM WE BUILT IS
REALLY ADAPTABLE TO MANY OF THE
CHALLENGES IN CHRONIC
CONDITIONS, ESPECIALLY
ADDRESSING THEM, WORKING
COLLABORATIVELY WITH THE
COMMUNITIES.
I'VE HIGHLIGHTED HELP KNOWLEDGE
SYSTEM, I WANT TO GET A LITTLE
BIT MORE INFORMATION ON WHAT
WE'RE DOING THERE.
THE PURPOSE OF THE PROGRAM WAS
TO TEST FEASIBILITY OF AN
NIH-FUNDED AND EXISTING
COMMUNITY MONITORING AND
RESPONSE SYSTEM.
WHAT ARE THEY MONITORING?
THEY ARE MONITORING THIS
INFORMATION AND PROVIDE
SCIENCE-BASED RESPONSES THAT CAN
HELP COMMUNITIES KNOW WHAT IS
TRUE, WHAT IS FALSE, AND
HOPEFULLY PROMOTE THE ENTIRE
COMMUNITY IN TERMS OF SCIENCE
AND EVIDENCE BASED KNOWLEDGE.
THE PROGRAM BUILDS ON THE I
HEART ST. LOUIS HEALTH
MONITORING AND RESPONSE SYSTEM.
WILL RUN INTO SEPTEMBER.
WE'RE HOPING WHAT WE LEARN FROM
THIS PILOT AS TO BEST STRATEGIES
TO GET SIZE-BASED KNOWLEDGE OUT
INTO THE COMMUNITIES COULD BE
SOMETHING THAT WE CAN SCALE UP
AND SPREAD.
SO, THESE ARE FOUR MAIN AREAS I
BRIEFLY WANTED TO HIGHLIGHT.
THERE WAS SOME MONITORING OF THE
RESPONSE SYSTEM ITSELF,
COORDINATING CENTER ALSO
PROVIDES TRAINING, COORDINATION
AND OVERSIGHT, AS WELL AS SOME
OF THE KEY ASPECTS OF DATA IN
TERMS OF RESEARCH.
WE HAVE BLUE RIBBON PANEL THAT
PROVIDES GUIDANCE AS TO THE BEST
STRATEGIES TO ADOPT, AND WE HAVE
A PARTNERSHIP WITH ANNENBERG
PUBLIC POLICY CENTER, UNIVERSITY
OF PENNSYLVANIA, AND ESPECIALLY
USING ITS EXTENSIVE KNOWLEDGE
AND FACT CHECK AND SCIENCE CHECK
PROJECT.
SO, THIS IS ONE EXAMPLE OF WHAT
WE'VE SEEN ON THE DASHBOARD, ON
THE EYE HEART ST. LOUIS.
I USED THE EXAMPLES, UPDATED AS
OF JANUARY 24.
WHEN YOU GO TO THAT LINK AND
HERE IS THE LINK, YOU CAN SIGN
UP FOR ALERTS, THEY WILL A
SERIES UP TO 10 KEY MESSAGES
HEARD IN THE COMMUNITY IN
ST. LOUIS, AND IF YOU CLICK ON
ANY ONE OF THEM, IT WILL TAKE
YOU TO WHAT THAT MESSAGE IS, AND
WHAT THE EVIDENCE SUGGESTS, SO
FOR THIS MESSAGE AROUND DNA
FRAGMENTS IN mRNA VACCINES
CHANGE YOUR DNA AND CAN AFFECT
YOUR HEALTH AND WHY IT'S
IMPORTANT DON'T EVER GET IT,
WELL, IS IT TRUE OR NOT TRUE?
AND THE PROGRAM SHOWS YOU THE
LATEST EVIDENCE SUGGESTS THE
CLAIM IS FALSE.
YOU CAN CLICK ON THIS TO GET
ADDITIONAL INFORMATION.
IT ALSO GIVES YOU AND EQUIPS YOU
WITH MESSAGES YOU CAN SHARE WITH
FAMILY AND FRIENDS THAT THE
CONCERNS ABOUT COVID VACCINE'S
INTERFERENCE WITH HUMAN DNA IS
SIMPLY NOT SUPPORTED BY
RESEARCH.
AND THAT COVID VACCINE EVEN
THOUGH IT HAS SMALL QUANTITIES
OF DNA FRAGMENTS DEFINITELY
CANNOT ENTER DNA AND PROVIDES
PLAIN LANGUAGE MESSAGES THAT
EMPOWERS THE COMMUNITY ECHOING
THIS MISINFORMATION, ONE
EXAMPLE.
THIS IS ONE OF THE FUNDING
OPPORTUNITIES I SAW ON THE NLM
WEBSITE.
I WAS THRILLED AND I SAID TO
MYSELF, JUST IMAGINE THE IMPACT
WE COULD HAVE WITH A NETWORK OF
NLM REGIONS ALL COLLECTIVELY
WORKING IN PARTNERSHIP WITH
REGIONAL TEAMS TO USE WHAT WE
LEARNED FROM THE HEALTH
KNOWLEDGE MONITORING TO REALLY
SPREAD TRUSTWORTHY HEALTH
INFORMATION IN COMMUNITIES
ACROSS THE COUNTRY, REALLY A
UNIQUE OPPORTUNITY.
SO WE'VE BEEN DOING THIS NOW FOR
THREE YEARS, FOR OUR YEAR 4
WE'VE DEFINITELY MADE A PIVOT
FROM ACUTE MANIFESTATIONS OF
COVID TO REALLY ADDRESS CHRONIC
CONDITIONS, ESPECIALLY THE
ABILITY TO DO RIGOROUS AND
MEANINGFUL COMMUNITY ENGAGED
RESEARCH THAT WILL PROMOTE
HEALTH EQUITY, PREVENTION AND
TREATMENT AS WELL AS CONTROL,
AND REALLY REDUCE DISPARITIES,
THROUGH ADDRESSING UPSTREAM
SOCIAL AND STRUCTURAL
DETERMINANTS OF HEALTH,
KNOWLEDGE IS CRUCIAL.
WE WANT TO PROMOTE AWARENESS IN
EDUCATION AS WELL AS HELP
KNOWLEDGE THROUGH EAVED --
EVIDENCE-BASED STRATEGIES.
INVESTIGATORS ARE GOING THROUGH
APPLICATIONS.
MY HOPE IS THERE WILL BE STRONG
PARTNERSHIPS BETWEEN OUR
LIAISONS AND NLM PROGRAM OFFICER
LIAISONS SO WE CAN REALLY MAKE
PROGRESS.
LET ME TACKLE WHY DATA SCIENCE
AND BIOINFORMATICS, AN AREA
WHERE HE LOOK TO THE NATIONAL
LIBRARY OF MEDICINE FOR MUCH
SUPPORT AND MUCH HELP.
WHY IT'S SUCH A CRUCIAL ROLE.
AGAIN, I DON'T NEED TO EXPLAIN
THAT TO YOU, ONLY TO MENTION
THAT WE ARE REALLY COUNTING ON
EXPERTISE WITHIN THE NLM AND
PROGRAMS YOU BUILT SO THAT WE
CAN REALLY INCREASE COMMUNITY
ACCESS TO TRUSTED SCIENCE-BASED
HEALTH INFORMATION.
WE WANT TO MAKE SURE THAT WE CAN
MAKE A LOCAL LEVEL HEALTH DATA
MORE ACCESSIBLE TO THE
COMMUNITIES THEMSELVES, AS WELL
AS TO RESEARCHERS THAT WE
SUPPORT.
IMPORTANTLY, WE WANT TO PROVIDE
INFORMATIC TOOLS AND TECHNOLOGY
THAT WOULD FACILITATE LOCAL
LEVEL COMMUNITY DATA ANALYSIS
AND THE ABILITY TO VISUALIZE
THEIR OWN DATA, ESPECIALLY
VISUALIZE THE TRENDS OF WHAT THE
DATA ABOUT YOUR COMMUNITIES LOOK
LIKE.
AND CERTAINLY EXPERTISE THAT NLM
HAS IN PROVIDING GUIDANCE AND
ETHICAL CONSIDERATIONS, ON DATA
SHARING, AND PRIVACY CONCERNS,
ALL REALLY IMPORTANT.
I'M FROM THE EXTRAMURAL RESEARCH
COMMUNITY.
AND HOPING THAT IN OUR
PARTNERSHIP WE CAN GET TOGETHER
TO REALLY ADVANCE EXTRAMURAL
RESEARCH WHEN IT COMES TO
COMMUNITY ENGAGEMENT.
NOT SURPRISINGLY, THESE ARE ALSO
IMPORTANT PRIORITIES IN THE NLM
STRATEGIC PLAN.
COMMUNITY ENGAGEMENT THROUGH
NATIONAL NETWORK, SOME WORK YOU
DO WITH "ALL OF US," THERE'S A
LOT WE LEARN FROM IT.
IN FACT, FOUR YEARS AGO, NEARLY
FOUR YEARS AGO WHEN WE STARTED
THIS EFFORT WE LOOKED TO THE
"ALL OF US" PROGRAM AND WHAT
THEY HAVE DONE IN COMMUNITY
ENGAGEMENT.
AND WE THINK A PARTNERSHIP LIKE
THIS WOULD REALLY ADVANCE
EFFORTS IN YOUR OWN STRATEGIC
PLAN WORKFORCE DEVELOPMENT IS
IMPORTANT TO YOU.
I CANNOT THINK OF ANYTHING MORE
IMPORTANT THAN OUR ABILITY AS AN
AGENCY TO SUPPORT WORKFORCE
DEVELOPMENT, PARTICULARLY FOR
COMMUNITY HEALTH WORKERS, SOCIAL
WORKERS, WHO GET THE WORD OUT,
WHO SUPPORT THE COMMUNITIES, AND
WHO PLAY CRUCIAL ROLES IN
LINKING COMMUNITIES TO THE CARE
THEY NEED.
AS WELL AS BENEFIT FROM FINDINGS
FROM RESEARCH.
I'LL CONCLUDE WITH A FINAL
SECTION ON A VISION FOR A
STRATEGIC ALLIANCE OF CEAL AND
NATIONAL LIBRARY OF MEDICINE.
MOST IMPORTANT IS REALLY GROWING
A TRUST IN SCIENCE, AND
CONTINUING TO GROW THAT TRUST IN
RESEARCH, THAT WILL FURTHER
ENHANCE PARTICIPATION, NOT JUST
IN THE RESEARCH, BUT ALSO IN THE
BENEFITS OF THE RESEARCH.
INCLUSIVE EXCELLENCE, MAKING
SURE THAT WE PROVIDED
OPPORTUNITIES TO ALL BOYS AND
GIRLS, MEN AND WOMEN, FROM ALL
RACE, ETHNIC GROUPS, TO MAKE
SURE WE REALLY BUILD THE
COMMUNITY THAT WE CAN BUILD.
HEALTH INFORMATION ACCESS AND
LITERACY ARE CRUCIAL.
OF COURSE DATA SHARING, DATA
ANALYSIS, INTERPRETATION, FOR
COMMUNITY HEALTH RESEARCH, THE
TOOLS AND TECHNOLOGY
DEVELOPMENT, AND THAT CAN MAKE
IT MUCH EASIER, MUCH FASTER, FOR
COMMUNITIES TO GET FROM DATA TO
ACTION, THAT'S GOING TO BE KEY.
MAKING SURE THAT WE SPREAD
SCIENCE-BASED HEALTH
COMMUNICATION, THAT WE CONTINUE
TO PROVE OURSELVES TRUSTWORTHY
SO THAT THE LONG HISTORY OF
TRUST YOU HAVE, THAT WE'VE HAD
AT NIH CAN CONTINUE TO GROW.
CERTAINLY EVALUATION AND
ASSESSMENT OF IMPACT SO WE CAN
DO MORE AND MORE OF WHAT WORKS,
DO LESS AND LESS OF WHAT HAS
BEEN INEFFECTIVE.
THERE'S ONE EXAMPLE OF THE
PROGRAMS THAT I MENTIONED
EARLIER.
THAT MAY EVEN BE TODAY OF VALUE
TO NLM AND I'M FULLY COMMITTED.
OUR PROGRAM TEAM IS VERY
COMMITTED, WORKING WITH THE
NATIONAL LIBRARY OF MEDICINE, TO
ADVANCE THIS.
THIS IS OUR CONSULTATIVE
RESOURCE.
WE HAVE SOME TERRIFIC LEADERS,
TREMENDOUS BACKGROUND, FROM
MOLECULAR BIOLOGY TO FAMILY
MEDICINE, LEADING THIS WORK.
WE TAP INTO THE ENERGY AND POWER
AND EXPERTISE OF COMMUNITIES TO
REALLY SHARE WITH RESEARCHERS
WHAT THE COMMUNITY RESOURCES
ARE, WHAT THE COMMUNITY
CHALLENGES ARE, SO THAT WE CAN
DO BETTER THAN SOME OF THE
LEVELS OF INCLUSIVENESS THAT OUR
RESEARCH HAS TODAY.
LEER EXAMPLES OF SOME NIH-FUNDED
PROGRAMS THAT HAVE BENEFITED
FROM THAT CONSULTATION.
ReCOVer IS ONE, ACTIVE SIX
MUCH EARLIER ON.
I'LL CONCLUDE BY HIGHLIGHTING A
FEW THINGS, ALL OF THIS IS VERY
WELL KNOWN TO YOU, AN IMPORTANT
PART OF YOUR OWN MISSION.
WE KNOW THAT NATIONAL LIBRARY OF
MEDICINE CONTINUES TO BE A
TRUSTED AND RESPECTED NATIONAL
TREASURE.
YOUR SERVICE TO SCIENCE AND
SOCIETY FOR MANY, MANY, MANY
YEARS, VERY WELL RECOGNIZED.
WHAT WE'RE TRYING TO DO AT CEAL
IS TO USE WHAT THE NATIONAL
ACADEMY OF MEDICINE CALLED
MEANINGFUL COMMUNITY ENGAGEMENT
IN RESEARCH, SO THAT WE CAN
IMPROVE HEALTH OUTCOMES AND
PROMOTE HEALTH EQUITY IN THESE
COMMUNITIES.
WE REALLY HAVE A UNIQUE
OPPORTUNITY TO BRING RESOURCES
OF THE 21ST CENTURY LIBRARY TO
UNDERSERVED COMMUNITIES, MANY IN
RURAL AREAS, WHO DON'T HAVE
ACCESS TO THE RESOURCES THAT WE
HAVE HERE IN BETHESDA.
I ALWAYS THINK OF MY COLLEAGUES
IN MANY RURAL AREAS, ESPECIALLY
LOW- AND MIDDLE-INCOME
COUNTRIES, TRYING TO COMPETE FOR
THE SAME GRANTS THOSE OF US HERE
IN THE UNITED STATES COMPETE
FOR.
THAT LACK OF ACCESS AND INEQUITY
AND IMBALANCE IS SOMETHING THAT
I HOPE WHEN WE THINK OF OUR
COMMUNITIES WE SERVE IN THE
U.S., WE CAN DO OUR BEST TO
REALLY LEVEL THE PLAYING FIELD
SO THAT THE ACCESS, INNOVATION,
TECHNOLOGY DEVELOPMENT, CAN
REALLY SPEED IMPROVEMENTS IN
HEALTH SO THAT OUR COMMUNITIES
CAN THRIVE.
WE REALLY, REALLY, REALLY LOOK
FORWARD TO WORKING WITH THE
NATIONAL LIBRARY OF MEDICINE TO
PROMOTE HEALTH, TO ADVANCE
DISEASE PREVENTION, TREATMENT,
AND EVEN CURES.
SO THAT WE CAN PROMOTE HEALTH
EQUITY IN THE COMMUNITIES WE
SERVE.
OBVIOUSLY-- OOPS, THAT DIDN'T
SHOW.
IT'S SUPPOSED TO SHOW IMAGE OF
THE ISSUE WITH THE AMERICAN
GENERAL PUBLIC HEALTH, THAT HAS
27 ARTICLES ALL FOCUSED, I'LL
SEND A LINK SO CAN YOU HAVE
ACCESS.
THEY ARE ALL OPEN ACCESS.
WE THINK IT ADDS SUBSTANTIVELY
TO THE LITERATURE.
I WANT TO RECOGNIZE THE TEAM
THAT MADE THIS WORK POSSIBLE,
INCLUDING THE HELP FROM NATIONAL
LIBRARY OF MEDICINE.
OUR CO-CHAIRS, IC DIRECTORS, DR.
GIBBONS AND DR. PEREZ-STABLE,
FROM NIMHD AND NHLBI, SUBJECT
MATTER EXPERTS FROM ACROSS THE
NIH, PARTICULARLY GRATEFUL FOR
THE NON-NIH EXPERTS WHO SERVE ON
OUR STEERING COMMITTEE,
CO-CHAIRS OF OUR WORK GROUPS,
INTEREST GROUP, THEY PLAYED A
TREMENDOUS ROLE, ESPECIALLY IN
THE FIRST YEAR WHEN WE SPENT
HOURS OF MEETING IN ORDER TO
SYNTHESIZE WHAT WE HEARD FROM
COMMUNITIES AND MAKE SURE WE CAN
SERVE THE COMMUNITIES
APPROPRIATELY.
THIS IS A REAL GEM THAT WE HAVE.
WE HAVE SUBJECT MATTER EXPERTS
FROM ACROSS THE NIH.
I REALLY WANT TO HIGHLIGHT AND
THANK RICHARD PALMER FROM NLM
FOR SUPPORT OF OUR PROGRAM.
AND WE ARE FORTUNATE TO HAVE THE
OFFICE OF NHLBI DIRECTOR.
WE USE THE OTHER TRANSACTIONS
AUTHORITY, O.T., WHICH PROVIDES
TREMENDOUS FLEXIBILITY, MORE SO
THAN A GRANT OR CONTRACT OR
COOPERATIVE AGREEMENT.
AND THAT HAS BEEN THE REAL
SAVIOR IN THIS WORK.
THE ABILITY TO PIVOT WHEN
NECESSARY, THE ABILITY TO CHANGE
COURSE, ABILITY TO CHANGE
SPECIFIC AIMS, YOU'RE NOT TIED
INTO ANYTHING THAT YOU FUND IN
YEAR ONE BUT BEING ABLE TO WORK
WITH THE COMMUNITIES AND MAKE
CHANGE AS WE GO ALONG.
OFFICE OF DIRECTOR HAS BEEN
EXTREMELY HELPFUL.
PROGRAM MANAGEMENT OFFICE,
EXTREMELY, EXTREMELY SUPPORTIVE.
AND WE ALSO HAVE THE SUPPORT OF
THE DELOITTE AND CTAC.
I HOPE THE MESSAGE CAME ACROSS,
I WAS THRILLED WHEN I HAD THE
OPPORTUNITY TO SPEAK WITH YOU.
I HOPE IT WON'T BE THE LAST ONE.
THANK YOU VERY MUCH FOR INVITING
ME.
>> WONDERFUL.
THANK YOU SO MUCH, DR. MENSAH.
IT IS AN ABSOLUTE DELIGHT TO
HAVE YOU JOIN US TODAY.
I'M A BIG FAN OF YOUR WORK.
SO IT'S WONDERFUL TO HEAR MORE
ABOUT CEAL FROM YOUR PERSPECTIVE
AND ESPECIALLY THINKING ABOUT IT
IN THE CONTEXT OF THE WORK OF
THE NATIONAL LIBRARY OF
MEDICINE.
SO WE HAVE THE OPPORTUNITY TO
HAVE SOME DISCUSSION.
AND I'D LIKE TO WELCOME
MS. JENNIE LUCCA AND MR. PHILIP
WALKER WHO WILL BE FACILITATING
THAT DISCUSSION.
AND BEFORE THEY GET STARTED I
ALSO WANT TO POINT OUT THAT
DIANE HAS KINDLY PASTED SOME
LINKS TO THE SPECIAL ISSUE THAT
YOU MENTIONED, INCLUDED IN YOUR
PRESENTATION.
I WILL TURN IT OVER TO JENNIE
AND PHILIP.
>> I'M HAPPY TO GO FIRST.
THANK YOU, DR. MENSAH.
THAT WAS REALLY FASCINATING.
I'VE BEEN FAMILIAR WITH THE CEAL
PROGRAM, BUT IT'S REALLY
EXCITING TO SEE THE PROGRESS
THAT YOU'VE MADE IN JUST A FEW
YEARS.
SOMETHING THAT I KEEP THINKING
ABOUT THOUGH IS WITH THE TRUST
IN SCIENCE, I KNOW THIS IS DR.
BERTAGNOLLI'S FOCUS AS WELL, DID
COVID KIND OF HIGHLIGHT THIS
MISTRUST AND WE DIDN'T
UNDERSTAND IT EXISTED AS DEEPLY
AS IT DID?
OR WAS THERE A SHIFT THAT
HAPPENED?
OR DIGITAL SOCIAL MEDIA
HAPPENED?
I KNOW THE HEALTH EQUITY PIECE
AND GOING INTO THE COMMUNITIES
BUT IT'S JUST WE HEAR ABOUT IT
MORE THAN WE EVER HAD.
I'M INTERESTED TO KNOW WHAT WAS
HAPPENING BEFORE COVID IN TERMS
OF COMMUNITY OUTREACH AND TRUST
IN SCIENCE.
>> JENNIE THANK YOU.
A VERY IMPORTANT QUESTION.
THE SIMPLEST ANSWER IS YES.
IT'S REALLY ALL OF THE ABOVE.
THE TRUTH IS COVID DIDN'T CREATE
IT.
IT JUST LAID BARE WHAT WAS
AROUND FOR ALL OF US TO SEE.
IT'S VERY MUCH THE SAME AS
DISPARITIES.
YOU KNOW, COVID DIDN'T CREATE
THE DISPARITIES BUT RIGHT IN THE
FIRST FEW MONTHS OF COVID, YOU
RECALL THE DEATH RATE BETWEEN
AMERICAN INDIAN AND WHITE
POPULATION WAS ALMOST 45-FOLD.
WE SAID THIS IS COVID
DISPARITIES, BUT TRUTHFULLY
DISPARITIES EXISTED.
YOU'RE ABSOLUTELY RIGHT.
MISINFORMATION EXISTED.
BUT EVERYTHING ALMOST GOT A
BOOST, COMBINATION OF SOCIAL
MEDIA, COMBINATION OF MAYBE
SUBOPTIMAL REVIEW OF WHAT GOES
ON AND WHAT'S ALLOWED TO SHOW
BUT IN ESSENCE A LOT OF THINGS
WERE MAGNIFIED IN THE COVID ERA.
WE STILL HAVE MISINFORMATION
AROUND HIGH BLOOD PRESSURE.
FOR EVEN 20 YEARS AGO.
I RECALL WHEN I WAS TREATING
PATIENTS, THOUGH MANY PATIENTS
WHO WOULD NOT PAY FIVE DOLLARS
FOR HYDROCHLOROTHIAZIDE, PROVEN
IN NIH-FUNDED RESEARCH IN DOUBLE
BLIND PLACEBO-CONTROLLED TRIALS
THE LOWER BLOOD PRESSURE REDUCED
STROKE, REDUCED HEART FAILURE,
YET THEY PAID $30 FOR GARLIC
PILLS BECAUSE THEY DON'T WANT TO
TAKE MEDICINE AND THEY DON'T
TRUST HOW THE MEDICINES HAVE
BEEN DEVELOPED.
SO YOU'RE RIGHT, IT'S A VERY
IMPORTANT ISSUE, IT'S NOT NEW.
BUT THE COMBINATION OF SOCIAL
MEDIA, INSTANT ACCESS TO THE
NATION AND THE SPREAD.
THAT'S WHY WE HAVE TO APPROACH
WITH AS MUCH VIGOR AS IT IS IN
OUR COMMUNITY.
>> THANK YOU.
>> YES, THANK YOU, DR. MENSAH.
I'VE HAD THE PLEASURE OF SITTING
IN ON A FEW OF THE MEETINGS LED
BY PAUL JUAREZ HERE AT OUR
NEIGHBORING INSTITUTION AT
MEHARRY MEDICAL COLLEGE, VERY
FAMILIAR, INSPIRED BY THE WORK
OF CEAL.
I REALLY APPRECIATE THE
DISCUSSIONS WE HAD AND MATERIALS
THAT REALLY FOCUSED ON MAKING
SURE THAT THEY WERE INCLUSIVE,
DIVERSE BY AGE AND ALSO
ETHNICITY AND ANCESTRY.
I WAS WONDERING, I HAVE TONS OF
QUESTIONS THAT WE DON'T HAVE
ENOUGH TIME FOR, BUT I DID FOCUS
REALLY LOOKING AT THE NLM
STRATEGIC PLAN, SOME THINGS YOU
MENTIONED HERE, IS THERE
OPPORTUNITY FOR CEAL TO BE USED
AS THAT KIND OF WORKFORCE
DEVELOPMENT, WITH THE SHORTAGES
OF PUBLIC HEALTH WORKFORCE THAT
WE'VE BEEN HEARING ABOUT, OVER
THE LAST FEW YEARS, BUT ARE
THERE OPPORTUNITIES THAT YOU ALL
SEE AT HIGHER LEVEL THAT CAN
START TO LOOK AT PROGRAMMING FOR
TRYING TO GET EVEN AS LOW AS
HIGH SCHOOLS TO START
UNDERSTANDING ABOUT COMMUNITY
RESEARCH AND PUBLIC HEALTH
RESEARCH, EVEN BIOMEDICAL
RESEARCH?
>> ABSOLUTELY IMPORTANT.
THANKS.
I'M NOT SURE, I SEE PHILIP
WALKER, PLEASE FORGIVE ME, I
DON'T KNOW WHAT TITLE YOU USE, I
REALLY APPRECIATE YOUR ASKING
THAT QUESTION.
IT'S REALLY IMPORTANT, EVEN
THOUGH WE ARE WELL NOPE FOR
CONDUCTING RESEARCH, THERE'S
ANOTHER IMPORTANT ASPECT OF OUR
WORK WHICH IS WORKFORCE
DEVELOPMENT, TRAINING AND CAREER
DEVELOPMENT.
AND NOT JUST TRAINING AND CAREER
DEVELOPMENT, LATE STAGES OF
RESEARCH, STRONG INTEREST IN
EARLY-STAGE INVESTIGATORS, ALL
THE WAY DOWN TO HIGH SCHOOL AND
BEYOND.
SOME PEOPLE BELIEVING WE SHOULD
START SOONER.
THE RESPONSE TO YOUR QUESTION IS
YES, BY TAKING THE FRAMEWORK AND
SAYING EVEN THOUGH WE'RE IN THE
COMMUNITIES, WHAT CAN THE
COMMUNITIES DO IN RESEARCH, WE
CAN PLAY A CRUCIAL ROLE IN
COMMUNITY CAPACITY BUILDING
WHETHER THROUGH COMMUNITY HEALTH
WORKERS, COMMUNITY NURSES,
SOCIAL SCIENCE, SOCIAL WORKERS,
ALL COMES UNDER OUR MISSION OF
RESEARCH TRAINING AND CAREER
DEVELOPMENT, AND I THINK THE
CEAL PLATFORM IS NOT THE ONLY
ONE BUT AT LEAST IN RECENT TIMES
WE BELIEVE IT'S ONE OF THE FEW
THAT PAYS ATTENTION TO WHAT THE
COMMUNITY MMUNITY WANTS, WHAT
THE COMMUNITY NEEDS, AS OPPOSED
TO WE'RE DOING OUR WORK, COMING
INTO THE COMMUNITY, FIVE
PRIORITIES, WE'D LIKE YOU TO
JOIN OUR RESEARCH.
WE'RE TURNING THINGS AROUND.
THANK YOU FOR MENTIONING IT.
IT'S REALLY IMPORTANT.
NLM WORKING WITH US, WORKING
WITH ALL OF US, WITH COMPASS,
ALL OF THESE PROGRAMS HAVE THE
UNIQUE OPPORTUNITY TO REALLY
MAKE A DIFFERENCE AND GO BEYOND
WHAT WE HAVEN'T TRADITIONALLY
BEEN DOING.
DR. AZAR?
>> DR. MENSAH, FANTASTIC TALK.
I REALLY APPRECIATE IT.
I GUESS THE QUESTION I HAVE IS
WHAT DO YOU DO ABOUT ALGORITHMIC
DISINFORMATION, WHERE, YOU KNOW,
SOME MEDIA COMPANIES ARE
AMPLIFYING SALACIOUS THINGS THAT
ARE I MEAN PROVEN TO BE FALSE,
BUT THAT'S WHERE, YOU KNOW, THE
DISCOURSE GOES, NOT NECESSARILY
TOWARDS PEER REVIEWED NIH
STUDIES, RIGHT?
SO JUST A QUESTION.
OVER.
>> A VERY IMPORTANT QUESTION.
IN FACT, THAT WAS THE REASON WHY
WE SUPPORTED A PILOT TO SEE IF
I-HEARD ST. LOUIS COULD BE
SCALED AND SPREAD.
YOU KNOW WE'RE NOT A REGULATORY
AGENCY SO WE HAVE VERY LITTLE
INFLUENCE ON REGULATIONS, THAT
CAN HAVE AN IMPACT.
WE VERY OFTEN DO NOT DEVELOP
POLICY, WE CAN INFORM POLICY AND
PROVIDE EVIDENCE THAT WOULD LEAD
TO INFORMING POLICY, AND WE'RE
HOPING RESEARCH WILL DO HOW YOU
SPREAD SCIENCE-BASED INFORMATION
AND GET PICKED UP AND GROW LIKE
WILDFIRE.
JUST IMAGINE IN EVERY COMMUNITY
WE HAVE WHEN EVER THERE'S
MISINFORMATION THEY HAVE ACCESS
TO TRUSTED INFORMATION.
I HAVE FAMILY MEMBERS WHO WILL
NOT CALL ME, GO ON THE WEB
FIRST, AND THEN SEVERAL WEEKS
LATER, WELL, YOU KNOW, I DIDN'T
WANT TO BROTHER YOU.
THIS IS WHY THE WEB WAS SAYING
WE REALLY NEED TO CHANGE THAT.
AND FOR ME, I'M EXCITED ABOUT
THE NATIONAL LIBRARY OF
MEDICINE, YOU DEAL WITH TRUST.
THERE'S SO MUCH TRUST THERE THAT
WHAT YOU DO, VERY STRONG
OPPORTUNITY TO BE SCALED.
THAT'S WHY WE'RE HOPING WE HAVE
OPPORTUNITY TO WORK TOGETHER.
>> THANK YOU.
>> HI, MARY.
GO AHEAD.
>> HI.
WELL, FIRST OF ALL, DR. MENSAH,
THANK YOU FOR A TERRIFIC
PRESENTATION.
THIS IS REALLY EXCITING.
A REALLY EXCITING EFFORT.
MY QUESTION IS, HAVE YOU NOTICED
A CHANGE IN BEHAVIOR, WITH THE
PILOTS, WITH GETTING MORE
SCIENCE-BASED INFORMATION OUT
THERE, HAVE YOU BEEN ABLE TO
MEASURE A CHANGE?
AND FOR EXAMPLE, WITH COVID,
ONCE YOU STARTED TO PUSH OUT,
CORRECT INFORMATION, AND
CHALLENGE FALSE INFORMATION
THAT'S OUT THERE, DID YOU SEE AN
UPTAKE IN THE VACCINE AND WERE
SOME OTHER AREAS THAT YOU'RE
MOVING INTO, I WOULD ASSUME HAVE
YOU SOME PLAN TO MEASURE
OUTCOMES OF GETTING MORE
INFORMATION OUT THERE.
>> THANK YOU VERY MUCH.
EXTREMELY IMPORTANT QUESTION.
IN THE EARLY DAYS OF THE
PANDEMIC HOW FOCUS WAS ON
GETTING PEOPLE TO SIGN UP.
WE DIDN'T HAVE A RIGOROUS WAY TO
MEASURE IMPACT OTHER THAN LOOK
AT NATIONAL SURVEY.
THERE'S GOOD NEWS.
IF YOU LOOK AT MISSISSIPPI,
AROUND JULY OF 2021, TO MAKE A
LONG STORY SHORT WE WERE
THRILLED BY THE END OF 2021 OR
BEGINNING OF 2022, VACCINE
HESITANCY RATE IN BLACKS AND
WHITES WERE ABOUT THE SAME.
IN FACT, WILLINGNESS TO ACCEPT
WAS HIGHER IN AFRICAN AMERICANS
THAN IN WHITES.
OF COURSE, WE'RE WANTED IT TO BE
HIGH IN EVERYONE BUT IN ONE
COMMUNITY THAT HAD SUCH
DISTRUST, THE FACT THE VACCINE
WAS DEVELOPED SO QUICKLY, HOW
CAN YOU TRUST THAT, DID YOU CUT
CORNERS?
THERE'S VERY GOOD EVIDENCE IT
DID MAKE A DIFFERENCE.
WE HAVE SIMILAR DATA FROM
LOUISIANA, WHERE, AGAIN, THE GAP
BETWEEN ACCEPTANCE RATE IN
AFRICAN AMERICANS AND WHITE
CLOSED.
UNFORTUNATELY WE DON'T HAVE VERY
OBJECTIVE DATA YET IN AMERICAN
INDIAN AND ALASKA NATIVE, BUT
SOME DATA SUGGESTS IT CAN MAKE
A DIFFERENCE.
WE COMPLETE THE PILOT IN
SEPTEMBER AND HAVE OBJECTIVE
DATA WE CAN SHARE WITH YOU.
>> THANK YOU.
AGAIN, IT'S BEEN WONDERFUL TO
WELCOME YOU TO PRESENT TODAY.
AND I THINK THIS IS AN AREA
WHERE THERE WILL BE DISCUSSIO
AND OPPORTUNITY FOR
COLLABORATION.
>> NEXT ON THE LIST IS
APPOINTMENT OF THE NOMINATING
COMMITTEE, DELIGHTED TO SHARE
THAT LAUREN MATTHEW, MARY
MAZANEK AND PAUL WESTER AGREED
TO SERVE ON THE NOMINATING
COMMITTEE, WORKING WITH AN
UPDATE IN THE FUTURE MEETINGS.
SO THANK YOU ALL VERY MUCH FOR
THAT.
WE APPRECIATE YOUR SERVICE.
AND WITH THAT, WE CAN CONCLUDE
THE OPEN PORTION OF THE BOARD OF
REGENTS MEETING.
WE WILL BE GOING INTO CLOSED
SESSION NOW, BUT I'D LIKE TO
THANK EVERYONE WHO WAS ABLE TO
JOIN US TODAY AND WE LOOK
FORWARD TO ONGOING CONVERSATIONS
ABOUT ALL OF THESE IMPORTANT
TOPICS COVERED. 5159 03:28:36,403 THANK YOU.