I WOULD LIKE TO CALL THIS
MEETING TO START, THE MEETING OF
THE NATIONAL LIBRARY OF MEDICINE
BOARD OF REGENTS IS NOW CALLED
TO ORDER.
WELCOME, EVERYONE.
BEFORE WE BEGIN, I HAVE A FEW
HOUSEKEEPING ANNOUNCEMENTS.
YOU SHOULD USE YOUR RAISE HAND
FEATURE TO BE RECOGNIZED, AND
DURING DISCUSSION SESSIONS,
PLEASE, THE ZOOM RAISE HAND
FEATURE, AND I WILL MONITOR THE
PARTICIPANTS' WINDOW AND TRY TO
RECOGNIZE PARTICIPANTS WITH
RAISED HANDS IN THE ORDER I SEE
THEM RAISED.
IF YOU NEED ASSISTANCE, USE
CHAT.
THE NLM MEDIA OPERATIONS STAFF
WILL BE MONITORING THE CHAT
THROUGHOUT TODAY'S MEETING AND
ARE AVAILABLE TO PROVIDE ANY
TECHNICAL ASSISTANCE THAT YOU
NEED.
YOU CAN ALSO REACH THEM VIA
EMAIL AT NLMMEDIAOPERATIONSTEAM
AT NLM.NIH.GOV.
PLEASE REMEMBER TO BE MINDFUL OF
YOUR CAMERA, THIS IS BEING
BROADCAST LIVE AND YOUR
MICROPHONE, BE SURE TO MUTE YOUR
MIC WHEN YOU'RE NOT PRESENTING
OR PARTICIPATING IN DISCUSSION.
SO THAT'S IT FOR OUR LOGISTICS
FOR THE MEETING.
AND NOW I WOULD LIKE TO
INTRODUCE A FEW PEOPLE.
SO WE HAVE A NEW ALTERNATE
EX-OFFICIO MEMBER, DR. MICHELLE
ELKANICH, DEPUTY DIVISION
DIRECTOR AND DI VUTION OF
INTEGRATED ORGANISMAL SYSTEMS,
SHE IS REPLACING DR. BRENT
MILLER.
ALSO I WANTED -- I HAVE THE
PLEASURE OF ANNOUNCING THREE NEW
PENDING BOARD MEMBERS.
THEY ARE ATTENDING AS
CONSULTANTS RIGHT NOW UNTIL
THEIR APPOINTMENTS ARE APPROVED
BY THE DEPARTMENT.
I'D LIKE TO WELCOME DR. ANDREW
CLARKE, PROFESSOR OF THE
DEPARTMENT OF MOLECULAR BIOLOGY
AND GENETICS AT CORNELL
UNIVERSITY.
WELCOME, DR. CLARKE.
ALSO WELCOME DR. MITCHELL KATZ,
PRESIDENT AND CEO OF NEW YORK
CITY HEALTH HOSPITALS, LAST BUT
NOT LEAST, MR. PHILIP WALKER,
DIRECTOR OF THE ES KINE FAMILY
MEDICAL LIBRARY AND LEARNING
CENTER AT VANDERBILT UNIVERSITY.
SO A VERY WARM WELCOME TO OUR
THREE NEW PENDING BOARD MEMBERS.
WITH THAT, WE ARE GOING TO TURN
OVER TO OUR FIRST REPORT FROM
THE OFFICE OF THE SURGEON
GENERAL.
AND THAT WILL BE FROM MS. JEANE
GARCIA DAVIS.
SHE IS A PUBLIC HEALTH
PRACTITIONER COMMITTED TO
EQUITABLE EVIDENCE-BASED HEALTH
POLICY AND PROGRAMMING,
PARTICULARLY AMONG MARGINALIZED
POPULATIONS WORLDWIDE.
SHE CURRENTLY SEFS AS ASSOCIATE
DIRECTOR WITHIN THE DEPARTMENT
OF HEALTH AND HUMAN SERVICES IN
THE OFFICE OF THE U.S. SURGEON
GENERAL.
PREVIOUSLY SHE WORKED AS A
COMMUNITY OUTREACH COVID-19
NURSE WITH THE MEDICAL RESERVE
CORE AND THE NEW YORK CITY
DEPARTMENT OF HEALTH IN 2020.
SHE HOLDS A BD IN CHEMISTRY M
JOHNS HOPKINS UNIVERSITY AND A
DUAL MASTERS IN NURSING AT
PUBLIC HEALTH FROM JOHNS HOPKINS
UNIVERSITY SCHOOL OF NURSING,
AND THE BLOOMBERG SCHOOL OF
PUBLIC HEALTH.
WELCOME, MS. GARCIA DAVIS.
>> THANK YOU SO MUCH, DR. REHM,
AND WELCOME, EVERYONE.
THIS IS TRULY AN HONOR, I JUST
WANTED TO START AND SAY THAT I'M
SO GRATEFUL AND HONORED TO BE
WITH YOU ALL AND I'M HUMBLED FOR
THIS OPPORTUNITY TO REPRESENT
OUR OFFICE AND DR. VIVEK MURPHY
ON BEHALF OF OUR TEAM.
I WORK ON THE SCIENCE AND POLICY
TEAM, I'M AN ASSOCIATE DIRECTOR
WITH OUR S & P TEAM AND I ALSO
WANTED TO WELCOME OUR DIRECTOR
WHO'S HERE WITH US, AS WELL AS
OUR DEPUTY DIRECTOR, AND LET ME
JUST ALSO START BY SAYING THANK
YOU ALL, THANK YOU, DR. BRENNAN,
IT'S REALLY JUST AN HONOR TO
WORK WITH YOU AND TO BE WITH YOU
AND BE INVITED, AND THANK YOU TO
THE WHOLE BOARD OF DIRECTORS
HERE FOR THIS OPPORTUNITY TODAY.
WE ARE SO THANK FULL FUL FOR R
WORK.
PUBMED, IT FEELS LIKE SUCH A
PART OF MY OWN CAREER JOURNEY
OVER THE LAST 20 OR SO YEARS
JUST SINCE I STARTED AS A HEALTH
WORKER, AND YOUR RESOURCES ARE
REALLY INSTRUMENTAL, AND FOR
MANY YEARS I THINK BACK TO THE
FIRST ADVISORY ON TOBACCO WHICH
I LOOKED THAT UP THE OTHER DAY
WAS OVER 7,000 ARTICLES, MANY OF
WHICH WERE LIKELY RELATED TO
SEARCH ENGINES THAT YOU ALL
HELPED TO PROVIDE WITH YOUR
INTRAMURAL AND EXTRAMURAL
RESEARCH, SO THANK YOU FOR BEING
HART PART OF OUR JOURNEY WITH
THE OFFICE OF THE SURGEON
GENERAL, KEEPING OUR EVIDENCE
BASE REALLY RICH AND INFORMING
THE SCIENCE AND POLICY AND THE
COMMUNICATION WE HAVE WITH THE
GENERAL PUBLIC.
IT'S REALLY INSTRUMENTAL.
AND I'D ALSO LIKE TO THANK YOU
ESPECIALLY FOR HELPING US
PARTNER WITH A NUMBER OF
DIFFERENT RESEARCHERS AND
ADVOCATES FROM COLUMBIA
UNIVERSITY, DR. ROSETTI WITH THE
AMERICAN MEDICAL INFORMATICS
ASSOCIATION, THAT WORK ON
REDUCING ADMINISTRATIVE BURDENS
IS REALLY ALSO VIE VITAL FOR S
WORK I'M ABOUT TO PRESENT TODAY,
WHICH IS AROUND THE LAST SURGEON
GENERAL'S ADVISORY, WHICH IS ON
ADDRESSING HEALTH WORKER
BURNOUT.
SO THANK YOU IN ADVANCE.
I WANTED TO JUST START THIS AND
HOPEFULLY YOU CAN SEE ALL OF
THIS, IF ANYONE IS ABLE TO GIVE
ME A QUICK THUMBS UP IF YOU CAN
SEE MY SCREEN.
THANK YOU SO MUCH.
APPRECIATE THAT.
WE HAVE A DEDICATION PAGE FOR
THOSE OF YOU WHO WERE ABLE TO
DOWNLOAD AND SEE THIS ADVISORY.
IF YOU HAVEN'T SEEN IT YET, I
WELCOME YOU TO OUR WEBSITE TO
DOWNLOAD THE ADVISORY.
THIS IS IN MEMORY OF ALL OF THE
HEALTH WORKERS WHO LOST THEIR
LIVES AND COMING OUT OF
NEW YORK, I KNOW A NUMBER OF YOU
HAVE WORKED THERE, MIGHT BE FROM
THERE, BUT THIS IS FOR THEM AS
WELL AS THE FAMILIES WHO
CONTINUE ON.
SO TODAY, THIS JOURNEY TOGETHER
VEILY AN
REALLY AN OVERVIEW OF THE THIS
ADVISORY, A LOT OF THE WORK I'VE
BEEN HELPING TO SUPPORT OUR TEAM
WITH OVER THE LAST -- WE
LAUNCHED THIS IN MAY, SO I'M
GOING TO GIVE A BRIEF OVERVIEW
AND WELCOME ANY QUESTIONS AT THE
END IF THERE'S TIME, BUT THEN
ALSO EMAIL, WE'RE ALWAYS HERE
AND HAPPY TO SUPPORT.
THEN FINALLY, I'LL CLOSE WITH A
PARTNERSHIP THAT WE WILL
CONTINUE ON WITH THE NATIONAL
ACADEMY OF MEDICINE,
PARTICULARLY THEIR ACTION
COLLABORATIVE THAT PRECEDED OUR
OWN EFFORTS JUST ON CLINICIAN
WELL-BEING AND RESILIENCE.
SO AS I MENTIONED EARLIER, THE
SURGEON GENERAL'S ADVISORIES, AS
MANY OF YOU KNOW, THESE ARE
RESERVED FOR PUBLIC HEALTH
ISSUES TO CALL URGENT ATTENTION
TO THE AMERICAN PEOPLE.
AND ONE OF THE FIRST ONES WAS
WITH U.S. SURGEON GENERAL TERRY,
THIS WAS IN THE LATE 1950s ON
TOBACCO.
HERE IN THE MIDDLE, DR. MURTHY
PRESENTING THE LAST ADVISORY
LAST YEAR ON CONFRONTING HEALTH
MISINFORMATION, AND THEN ALSO A
MORE RECENT ONE JUST PRECEDING
OURS ON HEALTH WORKER BURNOUT
WAS LAST DECEMBER, AND THIS WAS
ON PROTECTING YOUTH AND MENTAL
HEALTH.
AGAIN, THESE ARE SHORTER
DOCUMENTS CALLING ATTENTION,
THESE ARE NOT SURGEON GENERALS'
REPORTS.
THAT ONE WAS MORE YOU'VE
PROBABLY SEEN IN THE LAST 10
YEARS ON ADDICTION AND ARE MEANT
TO REALLY FRAME THE
CONVERSATION, ISSUES, IN A WAY
THAT ARE ACCESSIBLE TO
STAKEHOLDERS, INCLUDING POLICY
AND LAWMAKERS.
IN TERMS OF THE IMPACTS, THAT'S
SOMETHING WE'RE ALSO CONTINUING
TO LOOK AT, IS HOW DO WE MEASURE
SUCCESS.
SO I JUST WANTED TO NOTE, SO FOR
THE ONE ON TOBACCO, SINCE THEN,
IN ADDITION TO REALLY INSPIRING
AND SUPPORTING OTHER RESEARCH
AND POLICY EFFORTS, THIS LED TO
A NUMBER OF LAWS THAT WERE
BANNING CIGARETTE ADVERTISEMENTS
THAT PROMPTED THE HEALTH
WARNINGS ON PRODUCTS AND ALSO
CALLED FOR ANNUAL REPORTS ON
HEALTH CONSEQUENCES OF SMOKING.
SO HERE I WANTED TO SHARE, THIS
IS OUR HEALTH WORKER BURNOUT
ADVISORY.
I HAVE A COPY IF ANYONE WOULD
LIKE ONE, WE'RE HAPPY TO SHARE,
WE'RE OVER AT THE HUMPHREY
BUILDING AND WE HAVE A NUMBER OF
COPIES AVAILABLE OR YOU CAN
DOWNLOAD IT AT ANY TIME.
AGAIN, THIS IS THE WEBSITE AND
YOU'RE WELCOME TO LOOK AT IT.
WE HAVE A NUMBER OF DIFFERENT
STAKEHOLDERS AS OUR TARGET
AUDIENCE, PRIMARILY IT'S HEALTH
WORKERS AND HEALTHCARE DELIVERY
ORGANIZATIONS, PROVIDERS, PUBLIC
AND PRIVATE HEALTHCARE SYSTEMS.
IT ALSO INCLUDES GOVERNMENT AT
ALL LEVELS, IT SPEAKS TO --
THERE'S A SECTION ON PAYORS,
HEALTH TECHNOLOGY AND
INFORMATION TECHNOLOGY
COMPANIES, WHICH IS OUR
PARTNERSHIPS THAT YOU'RE AWARE
OF IN TERMS OF THE ASSOCIATIONS
FOR MEDICAL INFORMATICS AND
BIOMEDICAL INFORMATION.
WE ALSO PARTNER AND SUPPORT A
NUMBER OF DIFFERENT HEALTH
PROFESSIONAL TRAINING
ORGANIZATIONS, PROGRAMS,
INSTITUTIONS AND RESEARCHERS,
ACCREDITATION BODY, AND LAST BUT
NOT LEAST ARE THE COMMUNITIES
THAT HEALTH WORKERS ARE FROM.
SO THE TWO MAIN GOALS I WANTED
TO HIGHLIGHT THAT REALLY ARE THE
FOUNDATION FOR THIS WORK ARE
SOUNDING THE ALARM AND CALLING
ATTENTION TO THE UNPRECEDENTED
IMPACTS ON OUR NATION'S HEALTH
WORKERS.
AND WE'LL TALK A LITTLE BIT,
I'LL OVERVIEW WHAT WE MEAN BY
HEALTH WORKERS, BECAUSE THIS IS
A TERM THAT WE -- A PHRASE THAT
WE HAVE DONE TOGETHER WITH THE
NATIONAL ACADEMY OF MEDICINE AND
OTHER PARTNERS IN RAISING
ATTENTION TO NOT ONLY THE
UNPRECEDENTED IMPACTS BUT MANY
OF THESE THAT WERE LONG-STANDING
THAT PRECEDED THE COVID-19
PANDEMIC.
MANY SYSTEMATIC -- SYSTEMIC
CHALLENGES.
AND THE AIM IS, WITH MANY
ADVISORIES AND CALLS TO ACTION
AND PRODUCTS OUT OF OUR OFFICE
IS REALLY TO HELP OTHERS
CATALYZE AND MOBILIZE, AMPLIFY
THEIR WORK, BUT ALSO CALL FOR
CHANGES, LOOKING AT POLICY
CHANGES, STRUCTURES,
ORGANIZATIONAL CULTURES,
ANYTHING THAT HAS BEEN
CONTRIBUTED TO HEALTH WORKER
WELL-BEING.
SO I WANTED TO SHARE THIS, IT'S
A LOT OF INFORMATION ON THE
SLIDE, BUT WHEN I MENTIONED THE
PANDEMIC HAVING THESE
UNPRECEDENTED IMPACTS ON THE
HEALTH AND WELL-BEING OF HEALTH
WORKER, THREE OF THEM I WANTED
TO POINT OUT IN PARTICULAR, THE
FIRST ONE, AS WE ALL KNOW, THE
MENTAL HEALTH AND WELL-BEING OF
OUR HEALTH WORKERS HAS NEVER
BEEN SPOTLIGHTED MORE THAN
THROUGH THE LAST THREE YEARS,
AND THIS SUMMER LAST YEAR AND
MWR-CDC RELEASED THIS SURVEY
DATA HIGHLIGHTING THE INCREDIBLE
EFFECTS ON HEALTH WORKERS WHO
WERE REPORTING SYMPTOMS OF AT
LEAST ONE MENTAL HEALTH
CONDITION, MEANING SYMPTOMS OF
ANXIETY, DEPRESSION, PTSD OR
SUICIDAL IDEATION.
THAT WAS IN MARCH, THROUGH APRIL
OF 2021.
THEY ACTUALLY FOLLOWED UP WITH A
SURVEY IN MARCH THIS TIME OF
THIS YEAR.
SO THE PREVIOUS DATA WAS -- THE
PREVALENCE DATA WAS HIGHER THAN
REPORTED AMONG THE GENERAL
POPULATION, AND OUT OF THE
FOLLOW-UP SURVEY, I ALSO
WELCOME, IF YOU'RE INTERESTED IN
LOOKING AT THAT DATA, I'VE
INCLUDED THE LINK BELOW.
WHILE THE DATA IS NOW LOWER THAN
IT WAS, THANKFULLY, THIS TIME
LAST YEAR IN TERMS OF REPORTED
SYMPTOMS, IT STILL REMAINS
ACTUALLY QUITE HIGH AMONG THOSE
WHO ARE WORKING, MORE THAN 60
HOURS PER WEEK AND WHO REPORT
HAVING SPENT MORE THAN 75% OF
THEIR TIME WORKING ON THE COVID
RESPONSE.
SO THIS IS AN IMPORTANT CALL TO
ACTION AND SOME WAYS ON WHAT WE
NEED TO DO IN ORDER TO, AS A
COUNTRY AND AS DIFFERENT
STAKEHOLDERS IN SUPPORT RG THE
MENTAL HEALTH.
THIS STUDY, I'LL ALSO NOTE, IS
AMONG PUBLIC HEALTH WORKERS AND
SO WHILE MOST OF THE RESEARCH
THAT WE HAVE FOUND HAS BEEN
AMONG PHYSICIANS AND NURSES WITH
RESPECT TO BURNOUT AND
WELL-BEING, WE ARE ALSO SEEING
IN THE LAST THREE YEARS A RISE
IN RESEARCHER OR OTHER HEALTH
WORKERS, SO I'LL GO INTO THAT
NEXT.
BUT AGAIN, THE VIOLENCE AGAINST
HEALTH WORKERS, THIS IS ALSO
BECOMING INCREDIBLY SIGNIFICANT,
BUT ALSO AS A LONG-STANDING
ISSUE, AND FINALLY,
MISINFORMATION AND THE IMPACTS
THAT HAS NOT ONLY ON COMMUNITIES
BUT ALSO ON THE HEALTH WORKERS
THAT SERVE THEM.
SO I WANTED TO RAISE HERE HOW
WE'RE DEFINING HEALTH WORKERS.
AND HERE IS THE DEFINITION THAT
WE'VE BEEN USING THAT'S ROOTED
IN THE WORLD HEALTH
ORGANIZATION, ALSO THE U.S.
CENTER FOR DISEASE CONTROL AND
PREVENTION AND IT REALLY
DESCRIBES ALL HEALTH WORKERS.
WE WANTED TO MAKE SURE THAT WE
WERE INCLUSIVE WHILE MUCH OF THE
RESEARCH HAS BEEN AMONG
PHYSICIANS AND NURSES AND OTHER
PRACTITIONERS AND PROVIDERS,
THERE ARE ALSO DISPROPORTIONATE
IMPACTS THAT HAVE BEEN AFFECTING
LOW WAGE WORKERS SUCH AS NURSING
ASSISTANTS, HOME CARE AIDES,
HEALTH WORKERS AND INDIAN HEALTH
SERVICES WHO MIGHT ALSO FACE
SIMILAR HEALTH DISPARITIES AND
FOOD INSECURITY, BUT ALSO BLACK,
INDIGENOUS WORKERS OF COLOR WHO
MIGHT BE DISPROPORTIONATELY
AFFECTED, AS WE SAW IN NEW YORK
CITY AS WELL.
AND YOU'LL SEE THERE ARE A
NUMBER OF QUOTATIONS THROUGHOUT
THE ADVISORY.
THESE ARE ACTUAL QUOTATIONS,
WE'VE CHANGED THE NAMES OR FIRST
AND LAST NAME INITIALS TO
PROTECT PRIVACY BUT WE ALSO
WANTED TO GIVE LIFE TO THE
VOICES OF HEALTH WORKERS
THROUGHOUT.
SO HERE I'LL PAUSE ON THIS SLIDE
AND YOU'RE ALSO AGAIN TO USE THE
GRAPHICS OR ON THE WEBSITE TO
RAISE AWARENESS.
BURNOUT AS MANY OF YOU KNOW AND
MANY OF YOU HAVE LIKELY
EXPERIENCED, IT HAS THREE
DIMENSIONS.
IT WAS RECOGNIZED IN 2019 AS AN
OCCUPATIONAL PHENOMENON BY THE
WHO AND INCLUDED IN ICD-11 AND
IT'S REALLY -- THE THREE
DIMENSIONS ARE EXHAUSTION, A
CYNICISM OR JOB
DEPERSONALIZATION FROM WORK, AND
THEN ALSO A REDUCED FEELING OF
PERSONAL ACHIEVEMENT AT WORK OR
REDUCED PROFESSIONAL EFFICACY.
SO WE REALLY WANTED TO HIGHLIGHT
THAT BURNOUT IS A SPECIFIC
DEFINITION AND IT HAD REACHED
CRISIS LEVELS WHEN IN 2019, IT
WAS FURTHER DEFINED AND ELEVATED
AND CALLED TO ATTENTION BY THE
NATIONAL ACADEMY OF MEDICINE.
THEY FOUND IT REACHED CRISIS
LEVELS PARTICULARLY AMONG
PHYSICIANS AND NURSES.
SO WHAT'S DRIVING BURNOUT?
THERE ARE A NUMBER OF FACTORS,
AND HERE'S ANOTHER GRAPHIC.
I'M SORRY IT'S QUITE SMALL BUT I
ANY TIME WAKED TO SHARE THAT I
WANTED TO SHARE THERE ARE MANY
FACTORS ASSOCIATED WITH BURNOUT,
MANY LONG-STANDING.
SO I WELCOME YOU TO KIND OF SIT
WITH THIS VISUAL.
MANY OF THE ISSUES, MANY OF YOU
ARE WORKING ON OR KNOW VERY
WELL, AND ARE SUBJECT MATTER
EXPERTS ON.
SO MANY OF THEM, JUST TO
HIGHLIGHT THE ONES WE CONTINUE
TO HEAR ABOUT THAT ARE
LONG-STANDING BUT THAT HAVE BEEN
INTENSIFIED BY THE PANDEMIC AND
SPOTLIGHTED ACCESSING MENTAL
HEALTH AND SUBSTANCE USE EITHER
WITH QUESTIONS, FOR EXAMPLE, ON
HEALTH PROFESSIONAL LICENSING OR
CREDENTIALING APPLICATIONS, AND
THEN FINALLY THE HIDDEN
CURRICULUM, THESE KIND OF
EMBEDDED ORGANIZATIONAL
CULTURES, BOTH IN WORK AND
LEARNING ENVIRONMENTS, WHERE
PEOPLE ARE AFRAID TO SPEAK UP,
SPEAK OUT OR CHANGE THE CULTURES
THAT ARE SO HARD WIRED INTO
THEIR WORKPLACES AND LEARNING
ENVIRONMENTS.
AND SO WITH SO MANY OF OUR
VIEFERS RES AND CALLS
ADVISORIES, CALLS TO ACTION AND
SURGEON GENERAL REPORTS, WE
WANTED TO HIGHLIGHT EXACTLY WHAT
WERE THE IMPACTS NOT ONLY ON
HEALTH WORKERS BUT ON THE ENTIRE
HEALTHCARE SYSTEM.
THIS IS A VERY IMPORTANT ISSUE,
IT'S COMPLEX, IT'S INCREDIBLY
VAST, AND THERE ARE SO MANY
ISSUES AROUND IT, BUT THE IMPACT
WE WANTED TO MAKE SURE REACHED
THE AMERICAN PUBLIC AND GENERAL
PUBLIC AND CALL THEIR ATTENTION
TO WHY SHOULD THE PUBLIC CARE?
THIS IS A QUESTION WE CONTINUE
TO GRAPPLE WITH IN OUR STRATEGIC
COMMUNICATIONS EFFORTS.
AND SO SOME OF THE GREATEST
CONSEQUENCES ARE NOT ONLY THE
IMPACTS ON HEALTH WORKERS BUT
HOW THEY ALSO IMPACT THE
PATIENTS AND COMMUNITIES
THEMSELVES, THE HEALTHCARE
SYSTEM AND A LOT OF THE SOCIETAL
IMPACTS YOU SEE HERE.
SO MUCH OF IT HAS BEEN LINKED TO
THE INCREASE IN MEDICAL ERRORS
AND A LOWER QUALITY OF CARE AND
SAFETY IN THE HEALTH SYSTEM, BUT
WE'RE ALSO LOOKING AT INCREDIBLE
WORKFORCE SHORTAGES, NOT LIMITED
TO PHYSICIANS BUT ALSO TO
NURSES, TO OTHER HEALTH WORKERS,
AND LASTLY, ONE THAT CONTINUES
TO BE A TOPIC IS THIS EROSION OF
TRUST, MAKING SURE WE ARE
ADDRESSING THIS LOSS OF TRUST
BETWEEN COMMUNITIES AND THE
PUBLIC HEALTH SYSTEM AS WELL.
SO WHILE THERE ARE MANY
PROBLEMS, WE ARE ALSO WANTING TO
SUPPORT SO MANY OF THE SOLUTIONS
THAT EVERYONE HAS BEEN WORKING
ON AND ADVOCATING THAT STILL
NEED FURTHER SUPPORT, SO HERE I
WANTED TO HIGHLIGHT THE TOP LINE
RECOMMENDATIONS.
WE HAVE SIX HERE THAT HAVE
INFORMED THE ENTIRE REST OF THE
DOCUMENT YOU'LL SEE, WHICH IS A
STRUCTURE IN A WAY THAT'S BY
DIFFERENT STAKEHOLDER, SO I
WON'T READ THESE THROUGH HERE,
BUT YOU'LL SEE, THESE ARE THE
MAIN -- WE CALL THEM THE BROAD
CATEGORIES OR BUCKETS OF WHERE
DIFFERENT STRATEGIES AND
APPROACHES CAN BE UTILIZED.
THERE'S AN ACCOMPANYING GRAPHIC
THAT YOU'RE ALSO WELCOME TO
DOWNLOAD AND SHARE AS WELL, AND
YOU'LL SEE ALL OF THOSE
SOLUTIONS, WHILE LARGELY --
THERE ARE MANY SYSTEMS, PROBLEMS
THAT NEED CHANGE, WE CAN DO
THIS, WE'RE BETTER AND STRONGER
TOGETHER.
SO THESE ARE SOME OF THE
ADDITIONAL KIND OF CATEGORIES OF
SOLUTIONS AND REALLY THIS IS THE
VISION, EVERYTHING YOU SEE HERE
IN THE TREES AND THE LEAVES IS
BUILT ON TRUST AND AMONG THE
ROOTS IS REALLY THE
STAKEHOLDERS.
I WILL JUST POINT OUT HERE THAT
NOT VISUALIZED ARE DIFFERENT
ASSOCIATIONS BY MEDICAL OR
HEALTH PROFESSIONAL SPECIALTY,
FOSH
FOR EXAMPLE, THE AMERICAN
MEDICAL STUDENT ASSOCIATION AND
OTHERS THAT ARE INSTRUMENTAL AS
WELL IN BEING A PART OF THIS
CHANGE.
AND LABOR AND TRADE.
MANY OF US, WE UNDERSTAND THERE
ARE OPPORTUNITIES FOR WORKERS'
VOICE,
VOICES, INCLUDING THOSE WITH
ORGANIZED GROUPS.
I WANTED TO HIGHLIGHT AND THANK
YOU ALL FOR THIS PARTNERSHIP AND
SUPPORT WITH DR. ROW SE ROS,
DR. ROSENBLUM, THOSE WORKING TO
LOWER ADMINISTRATIVE BURDENS BY
2025.
IT ONE EXAMPLE, SO YOU'LL SEE
ONE EXAMPLE IS SPECIFIC TO
HEALTH TECHNOLOGY AND
INFORMATION, ONE FOR HEALTHCARE
ORGANIZATIONS, AND WE WELCOME
YOU TO TAKE A LOOK AT THOSE.
THIS IS ANOTHER EXAMPLE, THE
CHAPTER THAT'S ON HEALTHCARE
ORGANIZATIONS SPECIFICALLY, WHEN
WE TALK ABOUT ORGANIZATIONAL
CULTURE AND CHANGING THE HIDDEN
CULTURE OF MEDICINE TOWARDS ONE
OF WELLNESS AND BURNOUT TO ONE
OF WELL-BEING, THIS IS ONE OF
THE WAYS THAT LEADERS AT ALL
LEVELS CAN USE A GRAPHIC LIKE
THIS TO REALLY TALK ABOUT WHAT
ELSE IS NEEDED WITHIN THEIR NOT
JUST LARGELY ORGANIZATION BUT
WITHIN THEIR UNIT, WHETHER IT'S
A NURSING UNIT OR A COMMUNITY
MOBILIZATION TEAM OR OVERALL,
IT'S REALLY GROUNDED IN THESE
AREAS BUT IT'S ABOUT WELLNESS
CENTERED LEADERSHIP AND CARE,
CARING ABOUT EACH OTHER,
COMPASSION.
SO I JUST WANTED TO GIVE A FEW
BRIEF HIGHLIGHTS.
IN THE LAST
MINUTE HERE.
SINCE WE LAUNCHED THIS EVENT,
WE'VE HAD A NUMBER OF DIFFERENT
EVENTS WITHIN ATLANTA AND WITH
THE VICE PRESIDENT, SINCE MAY
AND SINCE THAT TIME AND ALSO
CHILDREN'S NATIONAL MEDICAL
CENTER, THERE IS A SCREENING ON
THE FIRST WAVE IF YOU HAVEN'T
SEEN IT YET WITH "NATIONAL
GEOGRAPHIC," AND DR. MURTHY HAS
ALSO WRITTEN A NEW ENGLAND
JOURNAL OF MEDICINE PERSPECTIVE,
I'VE ALSO INCLUDED THAT HERE IF
YOU'RE INTERESTED, AND MORE
RECENTLY, LAST WEEK HE'S ALWAYS
REALLY TRYING TO CONNECT AT ANY
EVENT OR ENGAGEMENT HE HAS, AND
THIS ONE UP IN NEW HAVEN,
FORTHCOMING WITH THE AMERICAN
MEDICAL STUDENTS ASSOCIATION TO
REALLY HELP INSPIRE THIS CULTURE
OF WELL-BEING AND ADDRESS THE
HIDDEN CULTURE AND ONGOING
ENGAGEMENT OF STAKEHOLDERS.
THESE ARE SOME PHOTOS I WANTED
TO SHARE FROM THE LAUNCH.
AND FINALLY THE LAST AND NEXT
IMPORTANT EVENTS ARE
COLLABORATION WITH THE NATIONAL
ACADEMY OF MEDICINE, SO THIS
ACTION COLLABORATIVE, THEY WILL
BE LAUNCHING A PLAN IN OCTOBER
IN THE NATIONAL PLAN ON THIS
PARTICULAR TOPIC.
DR. MURTHY SERVED AS CO-CHAIR
SINCE LAST YEAR ALTHOUGH THE
COLLABORATIVE HAS BEEN AROUND
SINCE 2017.
SADLY, IT REALLY -- THE
INCEPTION OF IT, AS MANY OF YOU
KNOW, NOT ONLY RELATED TO THE
RESEARCH AND ALL OF THE SOBERING
STATISTICS, BUT DR. ZAU WHO IS A
VISIONARY LOOKED AROUND THE ROOM
AND ASKED EVERYONE WHO HAS BEEN
AFFECTED AND KNOWS SOMEONE
THAT'S BEEN IMPACTED BY SUICIDE
AS A PHYSICIAN, AND SO MANY
PEOPLE RAISED THEIR HANDS.
ALIGNED WITH THE SURGEON
GENERAL'S ADVISORY AS WELL ON
THIS TOPIC.
AND LASTLY HERE, THIS WAS OUR
SINGLE -- OUR NATION'S
WELL-BEING DEPENDS ON THE HEALTH
OF OUR WORKFORCE.
THANK YOU SO MUCH.
APOLOGIES FOR GOING IN A MINUTE
OR TWO OVER.
WELCOME QUESTIONS AT ANY TIME.
>> THANK YOU SO MUCH.
THAT WAS REALLY TERRIFIC AND
REALLY FOCUSING ON SUCH AN
IMPORTANT AREA RIGHT NOW FOR OUR
ENTIRE SOCIETY BUT CERTAINLY
HEALTHCARE WORKERS IN
PARTICULAR.
WE DO HAVE A COUPLE MINUTES
BEFORE WE NEED TO MOVE ON, SO
I'M HAPPY TO FACILITATE
QUESTIONS.
LOURDES.
>> THANK YOU.
THANK YOU SO MUCH FOR THAT
PRESENTATION.
THAT WAS SLEPT.
I DO HAVE -- THAT WAS
EXCELLENT.
I COULD HAVE A QUESTION ABOUT IN
WHAT WAYS ARE WE MONITORING HOW
THINGS WILL BE CHANGING GIVEN
THE NATIONAL PLAN AND OTHER
THINGS?
SO JUST CURIOUS ABOUT HOW THE
POTENTIAL CHANGES ARE BEING
MONITORED SO THAT WE COULD TELL
WHETHER WE'VE MADE A DIFFERENCE?
>> THANK YOU SO MUCH, LOURDES.
THIS IS AN EXCELLENT QUESTION,
AND SOMEONE WHO HAS ALWAYS KEPT
MONITORING EVALUATION VERY
CLOSE, IT'S CLOSE TO MY HEART
AND MAKING SURE WE ARE DATA AND
EVIDENCE-DRIVEN.
I'LL SAY THAT THIS IS TOP OF
MIND BECAUSE WE ARE TALKING WITH
ALSO THE NATIONAL ACADEMY ON
THIS AND THE JOINT COMMISSION, I
THINK THERE'S A LOT OF
OPPORTUNITY IN TERMS OF HOW DO
WE ME SURE ACCOUNT ACCOUNTAY
MEASURED, SO WE'RE LOOKING AT
THE DIFFERENT METRICS AND THERE
ARE A NUMBER OF VALIDATED TOOLS
NOT LIMITED TO HEALTH
ORGANIZATIONS THAT MANY
STAKEHOLDERS CAN USE, SO WE'RE
DEFINITELY INTERESTED IN
SPEAKING MORE ABOUT HOW WE
MEASURE THE IMPACTS AND EVEN
SUPPORT SOME OF THOSE CHANGES,
BECAUSE THERE ARE SO MANY, THESE
ARE CHANGES IN INVESTMENTS,
CHANGES IN POLICY AT
ORGANIZATIONAL LEVELS BUT ALSO
ACROSS CITIES AND ACROSS SO MANY
HEALTH SYSTEMS, PROVIDERS, EVEN
WITH RESEARCH, LOOKING AT THE
NUMBER OF EVEN RESEARCH
INITIATIVES THAT ARE COMING OUT
IN TERMS OF WHAT'S NEEDED.
SO I'LL SAY THAT IT'S DEFINITELY
ON OUR MIND, SOMETHING WE'VE
TALKED ABOUT IS MAKING SURE THAT
THIS STAYS NOT -- THAT IT
DOESN'T JUST STAY AT THE FEDERAL
LEVEL BUT THIS IS AT ALL LEVELS
OF GOVERNMENT BUT ALSO THE
PARTNERSHIPS WITH COMMUNITY
ORGANIZATIONS, SO SOMETHING
WE'VE SPOKEN ABOUT IS IF THIS IS
SOMETHING THAT CAN BE -- THAT
CAN STAY WITHIN THE FEDERAL
LEVEL IN TERMS OF A WORKFORCE
STRATEGY, SO NOT JUST PUTTING
OUT THE PLAN BUT THE EVALUATION
BEHIND IT AND WHO WILL MONITOR
IT.
THE NATIONAL ACADEMY ALSO HAS
WHAT THEY'RE CALLING AN
IMPACT -- IMPACT AREAS THEY'RE
LOOKING AT TO MAKE SURE THAT AS
WE CONTINUE TO SUPPORT THOSE WHO
MOBILIZE AROUND ALL OF THE
DIFFERENT TOPICS, WHETHER IT'S
HEALTH IT, ADD ADMIN BURDENS R
ORGANIZATIONAL CULTURE, THEY
HAVE SOMETHING CALLED A
QUARTERLY MOBILIZING NATIONAL
STAKEHOLDERS, SO EACH TIME WE'LL
BE BRINGING STAKEHOLDERS
TOGETHER IN THE NEXT TWO YEARS,
LOOKING AT WHAT'S WORKING BUT
ALSO LOOKING AT WHAT'S NOT
WORKING AS A WAY TO HAVE NOT
ONLY INFORMATION AND PROMISING
PRACTICE EXCHANGE, BUT I THINK
AS A WAY TO ALSO CAPTURE WHAT'S
HAPPENING, NOT LIMITED TO THE
FEDERAL LEVEL.
SO WELCOME YOUR ADVICE VOOS L
AND RECOMMENDATION BECAUSE I
THINK IT'S SOMETHING WHERE WE
CAN ALL BE A PART OF THE CHANGES
AS WELL AS THE MEASUREMENT OF
THAT SUCCESS.
>> THANK YOU.
>> JOE.
>> THANK YOU.
NICE PRESENTATION, MS. DAVIS.
AND I'M WITH THE DEPARTMENT OF
VETERANS AFFAIRS AND WE'RE
LISTED ON YOUR FINAL SLIDE AS
ONE OF THE PARTNERS IN THIS.
I WANTED TO PUT KIND OF A SHOUT
OUT TO THE IMPORTANCE OF
MEASUREMENT AND ANALYSIS IN
REPORTING WITHIN AN
ORGANIZATION.
WE DO THIS ANNUALLY AND WE
INCLUDE A BURNOUT SCALE.
AND IT HAS SOME SURPRISING
FINDINGS.
WHICH WE'RE HAPPY TO SPEND SOME
TIME GOING OVER WITH YOU, BUT I
CAN TELL YOU IT IS NOT JUST
LIMITED TO HEALTHCARE PERSONNEL.
OUR MOST RECENT SURVEY WHICH WAS
CONDUCTED A FEW MONTHS AGO, SOME
OF OUR HOT SPOTS WERE ACTUALLY
IN OUR VETERAN CEMETERIES.
PARTICULARLY IN AREAS LIKE THE
SOUTHEAST, WHERE THERE ARE VERY
HIGH RATES OF MORTALITY RELATEDD
ALSO PERHAPS NOT SURPRISING IN
RETROSPECT, SOME OF OUR I.T.
STAFF, PEOPLE THAT HAVE BEEN
WORKING EXTRA HARD TO MAINTAIN
TELEHEALTH, TO MAINTAIN ZOOM AND
TEAMS CONFERENCES AND OUR
INFRASTRUCTURE AND PROTECTING US
FROM CYBER ATTACKS.
SO HAPPY TO SHARE THAT WITH THE
GROUP, BUT WHEN YOU LOOK AT
HEALTHCARE WORKER BURNOUT,
THAT'S A VERY BIG TENT, AND NOT
JUST NECESSARILY THE CLINICIAN
WORKFORCE.
SO THANK YOU.
>> THANK YOU SO MUCH,
DR. FRANCIS.
I REALLY APPRECIATE IT.
IT'S AN IMPORTANT POINT YOU
RAISE, AND I THINK THE VA HAS
BEEN SUCH A VANGUARD IN REALLY
ADVANCING THIS VISION AND
TALKING ABOUT HEALTH AND
WELL-BEING AS WHOLE HEALTH, THE
WORK THAT YOU DO IS INCREDIBLY
INSPIRING, SO WE'RE GRIT FULL
FOR IT, ESPECIALLY AS YOU LOOK
AT THE MEASUREMENT, AND ALSO
LOOK AT GROUPS THAT ARE REALLY
DISPROPORTIONATELY IMPACTED,
THAT THE QUANTITATIVE AND
QUALITATIVE RESEARCH TODAY MIGHT
NOT BE SHOWING, SO WELCOME
CONTINUED CONVERSATION AND THE
RESOURCES TOGETHER WITH YOU, BUT
THANK YOU TO YOU, ALL THE FOLKS
AT THE V.A. WHO ARE INSTRUMENTAL
AS PART OF THIS JOURNEY.
>> GREAT.
WITH THAT, THANK YOU AGAIN,
MS. GARCIA DAVIS, FOR THAT
WONDERFUL PRESENTATION.
WE'RE GOING TO MOVE ON TO THE
NEXT TOPIC IN OUR AGENDA.
WHICH IS ACTUALLY LOOKING AT
APPROVING THE MINUTES, FUTURE
MEETINGS.
SO WE'VE DISTRIBUTED THE MAY
TENTH, 2022 MINUTES, AND NOW I'M
GOING TO ASK FOR A MOTION TO
APPROVE THOSE MINUTES.
FROM THE BOARD.
AND IF THERE ARE ANY QUESTIONS
OR CONCERNS ABOUT THE MINUTES,
PLEASE RAISE THEM.
>> SO MOVED.
>> THANK YOU, JAMES.
AND A SECOND?
>> SECOND.
>> LOURDES.
ALL IN FAVOR OF APPROVAL?
>> AYE.
>> EXCELLENT, SO THOSE STAND
APPROVED.
NOW MOVING ON IN YOUR AGENDA ARE
A LIST OF THE FUTURE MEETING
DATES.
I WILL CALL OUT ONE THING, WHICH
IS THAT THE WINTER MEETING HAS
NOW OFFICIALLY BEEN MOVED TO A
VIRTUAL MEETING.
IT WILL BE ONE DAY ON
FEBRUARY 7TH.
AS MUCH AS WE ALL ARE YEARNING
TO EVENTUALLY BE TOGETHER IN
PERSON, IT WON'T HAPPEN IN
FEBRUARY, BUT WE ARE STILL
HOPEFUL THAT MAYBE IN THE
SPRING.
SO KEEP THAT ON YOUR CALENDAR AS
A POSSIBLE IN-PERSON MEETING IN
THE SPRING.
THERE HAS BEEN ONE ADDITIONAL
MEETING ADDED TO THE CALENDAR
FOR 2024, THE SEPTEMBER 13TH
THROUGH 14TH DATE.
SO THAT'S WHERE WE STAND WITH
MEETINGS, AND NOW I'D LIKE TO
ASK THE BOARD FOR APPROVAL OF
FUTURE MEETING DATES.
IS THERE A MOTION?
>> MOTION TO APPROVE.
>> THANK YOU, NANCY.
AND A SECOND?
>> SECOND.
>> THANK YOU, JAMES.
ALL THOSE IN FAVOR?
EXCELLENT.
ALL RIGHT, THE FUTURE MEETING
DATES STAND APPROVED.
THERE ARE ALSO A NUMBER OF OTHER
FUTURE MEETING DATES FOR YOUR
AWARENESS ON THE AGENDA.
AND WITH THAT, I THINK WE WILL
MOVE ON TO THE REPORT FROM OUR
NLM DIRECTOR, PATTI BRENNAN.
OVER TO YOU, PATTI.
>> HI.
JIM, YOUR LAND IS UP.
DID YOU -- YOUR HAND .
DID YOU HAVE A COMMENT OR
QUESTION BEFORE WE MOVE ON?
>> THE SYSTEM ACTUALLY DID THAT
FOR ME WHEN I RAISED MY HAND
APPARENTLY.
>> I DIDN'T THINK EVERYBODY'S
APPROVAL WOULD SHOW UP THAT
FAST.
GOOD MORNING, EVERYONE.
NLM STAFF, SENIOR LEADERSHIP WHO
ARE HERE, BOARD MEMBERS AND
GUESTS, THANK YOU VERY MUCH FOR
JOINING US FOR THIS BOARD
MEETING.
THE BOARD OF REGENTS PROVIDES
GUIDANCE AND HELPS THE NLM
IMPROVE ITS SERVICES AND YOUR
PRESENCE HERE AND YOUR WORK IN
BETWEEN THE BOARD MEETINGS IS OF
TREMENDOUS IMPORTANCE AS WE GO
FORWARD WITH OUR MISSION HERE.
I WANT TO INTRODUCE YOU FOR
THOSE WHO ARE NOT FAMILIAR WITH
OUR LEADERSHIP STAFF, TO OUR
LEADERSHIP TEAM.
WE HAVE AN OUTSTANDING GROUP OF
LEADERS THAT ARE PICTURED ON THE
SCREEN HERE.
MOST ARE AVAILABLE ON THE CALL
TODAY, AND ALL ARE AVAILABLE TO
YOU TO HELP WITH INTERPRETING,
UNDERSTANDING THE NLM, PROVIDING
ANSWERS TO QUESTIONS.
IF YOU GET ASKED SPECIFIC
QUESTIONS AS A BOARD MEMBER AND
YOU NEED PARTICULAR ASSISTANCE,
PLEASE DON'T HESITATE TO CONTACT
ME OR ANY OF THE MEMBERS THAT
ARE HERE.
THE NATIONAL LIBRARY OF MEDICINE
IS SUPPORTED BY A STRONG
LEADERSHIP TEAM, SEVERAL OF OUR
MEMBERS ARE IN ACTING POSITIONS
AND I'LL BE TALKING WITH YOU
ABOUT THAT IN A FEW MINUTES.
THE BOARD OF REGENTS ON THE
OTHER HAND HAS BOTH APPOINTED
AND EX-OFFICIO MEMBERS, AND I
AIN'T POOED I
APPOINTED MEMBERS MUST BE
APPROVED BY THE SECRETARY'S
OFFICE.
WE'RE IN THE PROCESS OF
APPOINTING OUR NEW MEMBERS FOR
THIS YEAR, BUT WE ARE PLEASED TO
HAVE ALL OF OUR THREE MEMBERS
JOINING US AS CONSULTANTS TODAY.
PHILIP WALKER, MITCHELL KATZ AND
ANDREW CLARK.
I HAVEN'T SEEN ANDREW CLARK YET
ON THE SYSTEM BUT I WONDER IF
MITCHELL AND PHILIP COME OFF
MUTE SO PEOPLE CAN HEAR YOUR
VOICE AND UNDERSTAND A LITTLE
ABOUT WHAT YOU BRING TO US.
MITCHELL?
>> YES, AND I'M JUST TRYING TO
PUT BACK ON MY CAMERA AS WELL.
MEANWHILE I'LL SPEAK.
SO I'M THE PRESIDENT AND CEO OF
NEW YORK CITY HEALTH AND
HOSPITALS, WHICH IS THE LARGEST
MUNICIPAL PUBLIC HEALTH SYSTEM
IN THE COUNTRY WITH THE OLDEST
PUBLIC HOSPITAL, BELLEVUE, AS
OUR FLAGSHIP HOSPITAL.
WE WENT THROUGH -- I VERY MUCH
ENJOYED THE PRIOR PRESENTATION
ON BURNOUT BECAUSE NRKZ HAD SUCH
A DIFFICULT TIME OF DEALING WITH
COVID THROUGH MARCH OF 2020,
WHEN SO MANY PEOPLE WERE ILL AND
THE STATE OF THE CITY WAS SO
AWFUL AND A LOT OF PEOPLE DIED
AND A LOT OF PEOPLE, I THINK,
WERE VERY MUCH TRAUMATIZED.
BEFORE I RUN RAN THE NEW YORKY
SYSTEM, I RAN THE PUBLIC SYSTEM
IN LOS ANGELES AND, BEFORE THAT,
THE SAN FRANCISCO SYSTEM.
SO I'M VERY INTERESTED
ESPECIALLY IN HOW THE LIBRARY
CAN BE OF GREATEST USE TO
PROFESSIONALS IN THE PUBLIC
HOSPITAL SYSTEM.
THANK YOU, PATTI.
>> THANKS VERY MUCH, MITCHELL.
GREAT TO SEE YOU AGAIN.
MITCHELL AND I WORKED TOGETHER
BEFORE SO WE HAVE A LITTLE
HISTORY BEHIND US.
PHILIP WALKER.
>> GOOD MORNING, EVERYONE.
THANK YOU BETWEEN THE INVITATION
OF DR. BRENNAN, I THINK THE
RECOMMENDATION FROM DIANE AND
ALL THE HELP FROM CHRISTINE OVER
THE LAST FEW MONTHS, THANK YOU
SO MUCH FOR THE OPPORTUNITY.
SO I'M PHILIP WALKER, CURRENTLY
THE DIRECTOR OF THE ANNETTE AND
IRWIN ESKIND FAMILY BIOMEDICAL
LIBRARY AND LEARNING CENTER AT
VANDERBILT UNIVERSITY.
I'VE BEEN IN LIBRARIES FOR 23
YEARS, ALTHOUGH 17 OF THOSE HAVE
BEEN INVOLVED IN ACADEMIC
MEDICAL CENTERS, A FEW YEARS AT
TULANE UNIVERSITY, NOW AT AT
VANDERBILT.
OF THOSE 23 YEARS, I'VE BEEN
INVOLVED BETWEEN PUBLIC
SERVICES, INFORMATION SERVICES
AND EDUCATION SERVICES,
COLLECTIONS, AS WELL AS -- AND
TECHNICAL SERVICES IN 1998.
AND IN ADDITION TO THAT, BEING
IN THE VANDERBILT ENVIRONMENT,
ALSO BEING -- LEARNING
HEALTHCARE AND A NEW INTEREST
I'VE KIND OF FELL INTO WITH
INFORMATION -- I CONSIDER MYSELF
A GENERAL LIST, JACK OF ALL
TRADES FOR INFORMATION.
SO THANK YOU ALL AGAIN.
LOOKING FORWARD TO THE NEXT FOUR
YEARS.
>> THANK YOU VERY MUCH.
DR. ANDREW CLARK HAS A
COMMITMENT, A CO-OCCURRING
COMMITMENT TODAY SO HE WILL BE
WITH US BUT HE'S NOT HERE NOW.
I'LL HAVE HIM JOIN IN AS SOON AS
HE LOGS IN TO THE SYSTEM.
APPOINTED MEMBERS ARE IMPORTANT,
THEY REPRESENT DIFFERENT
SPECIALTIES THAT SUPPORT THE
LIBRARY FROM COMPUTATIONAL
GENOMICS TO PUBLIC HEALTH
OUTREACH, AND WE'RE DELIGHTED TO
HAVE THIS BREADTH OF MEMBERSHIP
FROM THE PRIVATE SECTOR, FROM
THE PUBLIC SECTOR.
WE ALSO HAVE EX-OFFICIO MEMBERS.
BY LEGISLATION, THE NATIONAL
LIBRARY OF MEDICINE'S BOARD OF
REGENTS HAS ON IT REPRESENTATION
FROM THE MAJOR FEDERAL
LIBRARIES, PARTICULARLY LIBRARY
OF CONGRESS AND THE NATIONAL
AGRICULTURE LIBRARY, FROM THE
NATIONAL SCIENCE FOUNDATION,
FROM THE UNIFORMED SERVICES, AS
WELL AS THE UNIFORMED SERVICES
UNIVERSITY.
TODAY I'M HAPPY TO INTRODUCE YOU
TO DR. MICHELLE ALOCONICH.
>> THANK YOU.
I'M THE DEPUTY DIVISION DIRECTOR
FOR THE DIVISION OF INTEGRATIVE
ORGANISMAL SYSTEMS, WHERE WE
FUND GENOMICS, GENETICS,
PHYSIOLOGY, NEUROSCIENCE AND
DEVELOPMENTAL BIOLOGY.
I'VE BEEN AT NSF FOR ABOUT 12
YEARS AND BEFORE THAT, I WAS A
PROFESSOR AT THE UNIVERSITY OF
NEVADA LAS VEGAS, WHERE I DID
RESEARCH ON STRESS AND AGING
FUNCTIONAL GENOMICS OF STRESS
AND AGING USING A HONEY BEE
MODEL SYSTEM, BECAUSE YOU CAN
MAKE THEM AGE AND MAKE THEM GO
BACKWARDS, WHICH IS A REALLY
POWERFUL THING TO BE ABLE TO DO.
SO THANK YOU.
>> THANK YOU VERY MUCH.
I'VE NOT KNOWN THAT BEFORE.
I THINK I WANT TO BECOME A HONEY
BEE.
THE NATIONAL LIBRARY OF MEDICINE
CREATED A STRATEGIC PLAN ABOUT
FIVE YEARS AGO.
THIS IS DONE ABOUT EVERY DEKATE
FOR THE NLM.
OUR STRATEGIC PLAN IS DRIVEN BY
THREE PILLARS RIGHT NOW, TO
ACCELERATE DISCOVERY AND ADVANCE
HEALTH THROUGH DATA-DRIVEN
RESEARCH, TO REACH MORE PEOPLE
IN MORE WAYS THROUGH ENHANCED
DISSEMINATION AND ENENGAGEMENT
AND TO BUILD A WORKFORCE FOR
RESEARCH.
WE USE THIS MODEL TO EVALUATE
PROGRESS TO GUIDE OUR NEW
INVESTMENTS.
WE RECOGNIZE THAT UNDERLYING THE
POWER OF THE NATIONAL LIE F
MEDICINE IS A LONG TERM
COMMITMENT TO IMPORTANT SERVICES
SUCH AS PUBMED,
CLINICALTRIALS.GOV, AND OUR
OUTREACH SERVICES.
WE RECOGNIZE THAT THESE SERVICES
WILL CONTINUE AND THE STRATEGIC
PLAN PROVIDES US WITH IDEAS OF
HOW TO IMPROVE OR ENHANCE OR
COMPLEMENT THESE SERVICES.
ONE OF THE IMPORTANT ACTIVITIES
WE'VE BEEN WORKING ON IN THE
PAST YEAR IS FORMALIZING OUR
COMMITMENT TO CONTRIBUTIONS IN
POLICY LEGISLATION AND EXTERNAL
AFFAIRS.
YOU MIGHT NOT BE AWARE HOW MUCH
THE NLM PROVIDES GUIDANCE ACROSS
THE NIH AND ACROSS THE FEDERAL
GOVERNMENT AND FRANKLY
INTERNATIONALLY ON POLICIES
RELATED TO SCIENTIFIC
COMMUNICATION, TO CLINICAL DATA
AND OPEN DATA AND OPEN SCIENCE.
WE ARE CRITICAL IN MANY
DISCUSSIONS, MANY, MANY OF OUR
NATIONAL LIBRARY OF MEDICINE
STAFF MEMBERS HAVE SERVED ON
COMMITTEES WITH THE NATIONAL
ACADEMIES, WITH THE OFFICE OF
SCIENCE TECHNOLOGY POLICY, AND
HAVE PROVIDED THEIR EXPERTISE TO
THE NIH.
IN ADDITION ON THE FLIP SIDE,
POLICY AND LEGISLATION GUIDE
MUCH OF WHAT THE NLM CAN DO,
WHAT OUR PRODUCTS AND SERVICES
MUST LOOK LIKE OR HOW THEY'RE
USED IN THE PUBLIC GOOD.
FOR EXAMPLE, CLINICAL CLINV
RESULTED IN PART FROM
REGULATIONS THAT DESCRIBED HOW
TO BE PUBLICLY ACCOUNTABLE FOR
CLINICAL TRIALS.
PUBMED CENTRAL IS A VEHICLE THAT
WE USE TO DEVELOP AND IMPLEMENT
THE NIH'S RESPONSE TO THE 2013
OSTP MEMO ON OPEN ACCESS.
SO WE HAVE A BROAD RANGE OF
TOOLS THAT WE BUILD, MINDFUL OF
LEGISLATION.
IN THE LAST COUPLE OF MONTHS
WE'VE BEEN FORMALIZING OUR
POLICY LEGISLATION AND EXTERNAL
AFFAIRS.
IN JANUARY, WHEN HE RETURNED
FROM HIS DETAIL AT THE OFFICE OF
SIGH EBBS AND OFFICF
SCIENCE AND TECHNOLOGY POLICY
JERRY SHEEHAN ACCEPTED DEPUTY
DIRECT INVENTORY FOR POLICY
DIRECTOR FOR POLICY AND EXTERNAL
AFFAIRS.
WE ALSO PRESENTED A CONCEPT PLAN
TO THE NIH TO REQUEST APPROVAL
TO ESTABLISH A NEW OFFICE OF
POLICY AND LEGISLATIVE AFFAIRS
WITHIN THE NLM OFFICE OF THE
DIRECTOR.
AGAIN BECAUSE WE ARE OFTEN
CALLED UPON TO COMMENT ON,
PROVIDE GUIDANCE TO OR EVEN
PROVIDE PHRASES FOR IMPORTANT
PUBLIC DOCUMENTS.
ON THE RIGHT-HAND SIDE OF THE
SCREEN, YOU SEE OUR KEY POLICY
TOPICS AT THIS POINT IN TIME.
THE NEW NIH DATA MANAGEMENT AND
SHARING POLICY WILL COME INTO
EFFECT JANUARY 25TH OF 2023.
OUR TEAMS HAVE BEEN ACTIVE WITH
THAT FOR THE LAST SEVEN YEARS,
FORMALIZING THE POLICY, STANDING
HOW TO INTERPRET IT AND HELPING
RESEARCHERS AROUND THE COUNTRY
TO GET READY FOR RESPONSE TO
THIS POLICY.
WE'VE ENGAGED THE NETWORK OF THE
NATIONAL LIBRARY OF MEDICINE
CENTER FOR DATA SERVICES TO HELP
PREPARE THE LIBRARY COMMUNITY TO
BECOME PARTNERS WITH
INVESTIGATORS AROUND THE
COUNTRY.
OUR NATIONAL LIBRARY -- OUR
NETWORK OF THE NATIONAL LIBRARY
OF MEDICINE IF YOU'RE NOT
FAMILIAR WITH IT IS AN 8,000
POINTS OF PRESENCE AROUND THE
COUNTRY IN ACADEMIC MEDICAL
CENTERS, LIBRARIES, PUBLIC
LIBRARY, HOSPITAL LIBRARIES,
THAT BRINGS THE RESOURCES OF THE
N LSM M TO LM FROM THE COMMS
US AN OPPORTUNITY TO HEAR BACK
WHAT IS NEEDED.
IMPORTANTLY DURING THIS TIME OF
TRANSITION TO A DATA-DRIVEN
RESEARCH STRATEGY, WE NEED TO
HELP OUR INVESTIGATORS WHO ONCE
THOUGHT MAYBE KEEPING DATA ON A
FLOPPY DISK OR AN EXCEL SHEET
WAS SUFFICIENT TO BE PREPARED
FOR THE PUBLIC ACCOUNTABILITY OF
THE EXPECTATIONS UNDER THE DATA
MAN
MANAGEMENT AND SHARING PLAN.
WE HAVE ALSO BEEN ACTIVE NOW FOR
OVER 30 YEARS IN GENOME DATA
SHARING.
WHAT'S NEW RIGHT NOW IS WE
RECOGNIZE THE CRITICAL NEED FOR
GLOBAL COVERAGE AND
REPRESENTATIVE OF REPOSITORIES
THROUGH INTERNATIONAL ENGAGEMENT
AND COLLABORATION.
WE CAREFULLY ALIGN OUR WORK IN
THIS AREA WITH THE NIH AND THE
HHS AND OTHER PARTNERS IN THE
FEDERAL GOVERNMENT BUT WE
RECOGNIZE THE COMPELLING NEED
FOR OPEN ACCESS TO GENOMIC DATA
AROUND THE WORLD TO RESPOND TO
PANDEMICS, TO PREPARE FOR THE
NEXT PANDEMIC, AND TO IMPROVE
THE HEALTH OF THE PUBLIC.
WE'VE BEEN ACTIVE IN EXPANDING
ACCESS TO THE LITERATURE.
WHILE THERE'S MANY TECHNICAL
ASPECTS THAT REQUIRE LIBRARY
OPERATIONS AND STAFF INVOLVED
WITH, THERE ARE VERY IMPORTANT
POLICY DIMENSIONS ALSO.
WE'VE COLLABORATED WITH
PUBLISHERS TO ACCELERATE ACCESS
TO THE MONKEYPOX LITERATURE
DURING THIS PERIOD OF RAPID
INFECTION.
WE'VE ALSO BEEN WORKING CLOSELY,
BEFORE THE RELEASE OF THE
STATEMENT AND AFTERWARDS, WITH
THE OFFICE OF SCIENCE AND
TECHNOLOGY POLICY ON THEIR
STATEMENT ENSURING FREE,
IMMEDIATE AND EQUITABLE ACCESS
TO FEDERALLY FUNDED RESEARCH.
MANY OF THESE ENGAGEMENTS BRING
THE NLM'S EXPERTISE TO THE NIH'S
OFFICE OF SCIENCE POLICY, AND
THE REPUTATION THAT OUR STAFF
HAVE FOR BEING RESPONSIVE,
INSIGHTFUL AND CLEAR THINKING IN
THESE AREAS HAS BEEN CRITICAL
FOR THE FEDERAL RESPONSE.
WE ARE PREPARING FOR THE FUTURE
OF THE NATIONAL LIBRARY OF
MEDICINE.
WE WILL REACH OUR 200TH AN VERSE
REAL IN ABOUT 12, 14 YEARS NOW,
AND THERE ARE THREE AREAS I WANT
TO CALL TO YOUR ATTENTION TODAY.
FIRST, STRENGTHENING OUR
LEADERSHIP THROUGH STRATEGIC
HIRES.
WE'RE IN THE PROCESS OF
FINALIZING THE APPOINTMENT OF A
DIRECTOR FOR NCBI, NATIONAL
CENTER FOR BIOTECHNOLOGY
INFORMATION, WHO WILL ALSO HOLD
THE TITLE OF ASSOCIATE DIRECTOR
OF NLM FOR SCIENTIFIC DATA
RESOURCES.
THEE DUAL TITLES REFLECT THE
IMPORTANT RESPONSIBILITIES OF
EVERY MEMBER OF OUR LEADERSHIP
TEAM TO NOT ONLY UNDERSTAND
THEIR OWN DIVISION AND
RESPONSIBILITIES BUT ALSO TO
TAKE A BROAD ONE NLM PERSPECTIVE
TO FIND LEVERAGING EFFICIENCIES,
EXPERTISE AROUND THE NLM SO WE
ADVANCE OUR OVERALL MISSION IN
ADDITION TO SUPPORTING OUR
DIVISIONAL ACTIVITIES.
WE HAVE BEEN ACTIVELY SEARCHING
FOR A SCIENTIFIC DIRECTOR.
IN MAY OF THIS YEAR, I BROUGHT
TO YOU WHAT I THOUGHT WAS GOOD
NEWS WE WERE IMMINENTLY MAKING
AN APPOINTMENT FOR SCIENTIFIC
DIRECTOR.
WE DID EXTEND AN OFFER.
THE OFFER WAS DECLINED.
SO THE SCIENTIFIC DIRECTOR
SEARCH COMMITTEE CONTINUES WITH
A TARGETED OUTREACH.
THIS HE THEY ARE IDENTIFYINGW
CANDIDATES AND IN THE PROCESS OF
INTERVIEWING NEW CANDIDATES.
WE HAVE THREE LEADERSHIP
POSITIONS THAT ARE IN THE
PREPLANNING PHASE OF THE
RECRUITMENT.
THE FIRST IS THE NLM ASSOCIATE
DIRECTOR FOR EXTRAMURAL
PROGRAMS.
DR. FLORENCE HELD THIS POSITION
FOR MANY YEARS AND ABOUT TWO
YEARS AGO, ASSUMED THE ACTING
SCIENTIFIC DIRECTOR, WHICH
REQUIRED THAT SHE VACATE HER
LEADERSHIP IN THE EXTRAMURAL
PROGRAM.
WE'VE BEEN VERY PLEASED TO HAVE
DR. RICHARD PALMER SERVE AS
ACTING DIRECTOR OF THE
EXTRAMURAL PROGRAMS.
WE NEED TO STRENGTHEN THAT
POSITION AND WE ARE PREPARING
THE STRATEGY FOR DOING SO.
THOSE IN THE FEDERAL GOVERNMENT
CAN IMAGINE WHAT IT'S LIKE TO
THINK ABOUT RECRUITING WHEN YOU
HAVE AN INCOUPLE WENT INT
QUITE IN THE POSITION.
IT'S A FASCINATING WAY TO
RECRUIT INDIVIDUALS FRANKLY.
THE LISTER HILL CENTER FOR
BIOMEDICAL COMMUNICATIONS IN THE
LAST 2 1/2 YEARS REORGANIZE
UNDER AT CLEAR BRANCH STRUCTURE
OF A RESEARCH BRANCH, THE
COMPUTATIONAL HEALTH BRANCH, A
RESEARCH AND DEVELOPMENT BRANCH,
AND SCIENTIFIC COMPUTING BRANCH.
DR. BONERAIDER HAS BEEN SERVING
AS ACTING DIRECTOR WITH
TREMENDOUS LEADERSHIP IN THIS
AREA.
WE DO RECOGNIZE THE NEED FOR A
PERMANENT DIRECTOR.
WE ARE SEARCHING FOR DEPUTY
DIRECTOR FOR OPERATIONS AND
INNOVATION.
WE HAVE IN THE PAST ALWAYS HAVE
TWO DEPUTY DIRECTORS.
THIS POSITION WILL REPORT TO ME
AND HAVE OVERSIGHT ON CRITICAL
PROGRAMS SUCH AS OUR DIVERSITY
AND EQUITY INITIATIVES, THE
OPERATIONAL DECISIONS THAT
IMPREMENT
IMPLEMENT THE POLICIES THAT
WE'RE ENGAGED WITH, AND MOST
IMPORTANTLY, KEEP US FOCUSED ON
A CONCEPT OF CONTINUOUS
INNOVATION.
WE RECOGNIZE THE IMPORTANCE
ESPECIALLY DURING THIS NEW MODE
OF WORKING TO CREATE A CULTURE
OF CONTINUOUS INNOVATION IN AN
INSTITUTION THAT IS BOTH AS
VENERABLE AND AS
FORWARD-THINKING AS THE NATIONAL
LIBRARY OF MEDICINE IS.
WE NEED TO INSTILL INNOVATION
ACROSS OUR ENTIRE WORKFORCE TO
EMPOWER WORK TEAMS TO BE ABLE TO
IN AN ACCOUNTABLE FASHION
ENVISION AND CARRY FORWARD NEW
IDEAS AND REPLACE OR SUPPLANT OR
SUNSET WORK THAT IS NO LONGER AS
CRITICAL OR AS VALUABLE TO OUR
MISSION.
PRESENTLY THERE IS A REQUEST FOR
INFORMATION THAT'S BEEN
CIRCULATED TO CONDUCT MARKET
RESEARCH TO INFORM THIS
INITIATIVE ON INNOVATION.
WE ENVISION A 9 TO 12 MONTH
EXERCISE TO STRENGTHEN THE
ORGANIZATIONAL POSTURE OF
CONTINUOUS INNOVATION.
THE RFI WAS RELEASED IN EARLIER
SEPTEMBER THIS YEAR, AND THE
RESPONSES ARE DUE
SEPTEMBER 20TH.
IF ANY OF YOU ARE INTERESTED,
PLEASE LET ME, JERRY OR
CHRISTINE KNOW AND WE'LL BE
HAPPY TO PROVIDE YOU WITH THE
LINK TO THAT RFI.
NLM REMAINS COMMITTED TO
ADVANCING THE NIH'S COMMITMENT
TO DIVERSITY, EQUITY, INCLUSION
AND -- I'M SORRY, ACCESSIBILITY,
THAT LAST WORD SHOULD BE, NOT
EQUITY.
WE DID IN THE SUMMER OF THIS
YEAR SUBMIT THE NATIONAL LIBRARY
OF MEDICINE'S RACIAL AND ETHNIC
EQUITY PLAN, REFERRED TO AS THE
REEP PLAN, WHICH IS AN EXERCISE
THAT ALL INSTITUTES AND CENTERS
AROUND THE NIH HAVE UNDERTAKEN.
THIS ENGAGED OVER 40 NLM STAFF
MEMBERS INCLUDING THREE MEMBERS
OF THE INTRAMURAL RESEARCH
PROGRAM TO ENSURE THAT DEIA
ADDRESSED BOTH OPERATIONS AND
RESEARCH.
THE REEP PLAN FOCUSES VERY
CLEARLY ON THE NIH'S WORKFORCE.
WE HAVE PARALLEL EFFORTS GOING
ON IN TERMS OF OUR RESEARCH
PROGRAM, THE OPENNESS AND EQUITY
OF THE TERMINOLOGIES USED TO
SEARCH OUR REPOSITORIES AND
ACCESS TO DATA IN OUR LARGE DATA
REPOSITORIES.
OVER THIS PAST SUMMER, THE
INTRAMURAL RESEARCH PROGRAM
HOSTED FIVE DATA SCIENCE
DIVERSITY INTERNS.
THIS BROUGHT YOUNG PEOPLE FROM
SCHOOLS THAT SERVE MARGINALLY
REPRESENTED COMMUNITIES TO THE
NIH FOR A 10-WEEK EXPERIENCE,
PARTNERING WITH ONE OF OUR SEEN
YEAR INVESTIGATORS.
I WAS REALLY DELIGHTED TO SEE
THAT WE HAD A LOT OF OUR SENIOR
INVESTIGATORS WILLING AND READY
TO BRING THESE YOUNG PEOPLE IN.
WE FUND RESEARCH IN THE
COMMUNITY AS WELL AS AT THE NIH,
AND I WANT TO SPEAK A LITTLE
ABOUT THE ADVANCES IN OUR
EXTRAMURAL RESEARCH PROGRAM,
HIGHLIGHTING FOUR KEY TOPICS.
FIRST, WE ARE VERY PLEASED TO
HAVE THE INSTITUTE THAT IS
OVERSEEING A PIONEER AWARD TO
DR. SHERRY ROSE, TO DEVELOP A
FRAMEWORK FOR THE SOCIAL IMPACT
OF ALGORITHMS IN HEALTHCARE.
DR. ROSE IS WELL-KNOWN TO THE
NLM FOR HER WORK IN ARTIFICIAL
INTELLIGENCE THAT MITIGATES OR
AT LEAST REDUCES THE CHANCE OF
INEQUITABLE RESPONSES AND
RECOMMENDATIONS.
THIS WILL BROADEN HER WORK
AROUND A STRUCTURE WHICH OTHER
INVESTIGATORS CAN EVALUATE THE
SOCIAL IMPACT OF THEIR
ALGORITHMS.
WE'RE ALSO SUPPORTING A VERY
INNOVATIVE PROGRAM TOWARDS THE
SMART BIONIC EYE.
AI-POWERED ARTIFICIAL VISION FOR
THE TREATMENT OF INCURABLE
BLINDNESS.
THIS IS AN NIH INNOVATORS AWARD,
AND THIS IS A WAY TO MOVE AWAY
FROM THE BIOLOGICALLY BASED OR
PHYSIOLOGICALLY BASED ARTIFICIAL
VISION TO ACTUALLY INCREASING
THE VISUAL INTERPRETATION
THROUGH A.I. AND MAKING A
CONNECTION THROUGH NEURAL
PROCESSES.
WE'RE EXCITED TO SEE HOW THIS
WORK MAY OCCUR.
IT REPRESENTS A SIGNIFICANT
CHANGE IN THE EFFORTS OF HELPING
THOSE WHO ARE VISION-IMPAIRED.
UNDER DR. PALMER'S DIRECTION, WE
RELEASED SOMETHING CALLED THE
SHORT TERM RESEARCH EDUCATION
EXPERIENCES TO ATTRACT TALENTED
STUDENTS TO BIOMEDICAL
INFORMATICS DATA SCIENCE CAREERS
AND ENHANCE DIVERSITY.
WE MADE 12 AWARDS IN THE PAST
MONTH.
THEY'RE MARKED ON THE MAP ON THE
SCREEN IN FRONT OF YOU, TO REACH
AREAS AND REACH YOUNG PEOPLE
ADDRESSING THOSE WHO ARE NOT
TRADITIONALLY REPRESENTED IN THE
BIOMEDICAL AND DATA SCIENCE
WORKFORCE.
FINALLY, WE CONTINUE OUR T15
TRAINING SUPPORT.
WE HAD OUR FIRST IN-PERSON
CONFERENCE WITH OUR T15
TRAININGS.
DR. PALMER AND HIS TEAM ARE
WORKING WITH THE TRAINING
DIRECTORS TO UNDERSTAND THE BEST
WAY TO SUPPORT OUR TRAINEES,
CONSIDERING MODIFICATIONS, FOR
EXAMPLE, IN DIFFERENT
FLEXIBILITIES TO ALLOW TRAINEES
TO ATTEND MEETINGS THAT ARE
TOPICALLY RELEVANT AS WELL AS
THOSE THAT ARE RELEVANT TO THE
TRAINING PROGRAM.
AT MOST OF OUR MEETINGS, I'M
DELIGHTED TO BRING YOU A VIDEO
THAT SHOWCASES SOME OF OUR WORK
AND NOW I WOULD LIKE TO SHOWCASE
OUR WORK GOING ON AT THE
UNIVERSITY OF MICHIGAN.
DERRICK?
>> MY PROPOSAL TO THE NATIONAL
LIBRARY OF MEDICINE WAS TO
DEVELOP AND DESIGN ARTIFICIAL
INTELLIGENCE, SPECIFICALLY A
COMPUTER VISION MODEL WHICH
COULD LOOK AT A PICTURE OF PILLS
INSIDE A MEDICATION BOTTLE AND
ACCURATELY IDENTIFY THE CONTENTS
OF THAT BOTTLE.
WE ARE TESTING HOW THAT MODEL
CAN BE USED IN COLLABORATION
WITH THE HUMAN, SO THAT ERRORS
DON'T HAPPEN IN THE PHARMACY.
>> HOW DO YOU TEACH A MACHINE?
IF YOU WANT A MACHINE TO
DIFFERENTIATE BETWEEN AN ANOMALY
IN MEDICAL DISPENSING OR NOT,
WHAT YOU DO IS YOU GIVE THE
MACHINE IMAGES OF ANOMALIES, YOU
GIVE THE MACHINE IMAGES OF GOOD
MEDICATIONS, AND YOU TELL THEM,
THIS IS GOOD, THIS IS BAD.
WHEN THE ALGORITHM CAN MAKE THIS
LINK, THEN IF YOU GIVE THE
ALGORITHM A NEW IMAGE, THE
ALGORITHM CAN PREDICT THIS IMAGE
BELONGS TO WHICH CLASS, IS IT
THE GOOD GROUP OR THE BAD GROUP.
SO FUNDAMENTALLY, IT'S A
MATCHING DECISION.
DONE IN A FANCY MATHEMATIC WAY.
>> THE WAY WE SEE THIS BEING
IMPLEMENTED IS ONCE WE HAVE THAT
PICTURE OF PILLS IN THE BOTTLE,
WE CAN USE THIS MODEL TO PREDICT
WHAT MEDICATION IS IN THAT IMAGE
AND CROSS-REFERENCE IT WITH THE
EXPECTED OR INTENDED MEDICATION
THAT WAS SUPPOSED TO BE FILLED.
IN THIS WAY, WE CAN SUPPORT
PHARMACISTS IN THEIR
DOUBLE-CHECK VERIFICATION OF THE
PATIENT GETTING THE RIGHT PILL
IN THE RIGHT BOTTLE.
>> THE RESULTS WERE SURPRISINGLY
POSITIVE.
AND WE FOUND THAT OUR ALGORITHM
CAN PREDICT WITH AN ACCURACY
ABOVE 99.5%.
BUT ONE THING THAT WE ARE AFRAID
OF, EVEN THOUGH 0.5% CAN BE
CRITICAL, OUR HOPE IS THAT IN
THOSE CASES WHERE THE ALGORITHM
IS WRONG, THE ALGORITHM CAN TELL
US THAT IT IS NOT CONFIDENT IN
ITS RESULTS.
THEN AT LEAST THE HUMAN CAN
DOUBLE-CHECK.
>> OUR NEXT STEP IS TO WITH
PHARMACISTS, HAVING TO TRACK HOW
THEIR TRUST CHANGES OVER TIME ON
A TRIAL TO TRIAL BASIS.
SO THROUGH THE EXPERIMENT, WE
CAN COLLECT PARTICIPANTS'
RESPONSES, THEIR PHYSIOLOGICAL
SIGNALS, AND WE WANT TO USE EYE
TRACKING AND BY ANALYZING THEIR
RESPONSES AND SEEING THOSE, WE
CAN TRACK HOW THEIR TRUST
CHANGES OVER TIME, HOW THEIR
BEHAVIORS, THEIR PERFORMANCE
CHANGES OVER TIME.
>> THE ULTIMATE GOAL OF THIS
PROJECT IS TO DEVELOP SAFER
SYSTEMS THAT CAN BE USED TO SAVE
LIVES AND PREVENT MEDICATION
ERRORS FROM CAUSING HARM TO
PATIENTS.
>> IT MAKES SENSE TO ME.
AS AN ENGINEER, I BELIEVE OUR
ULTIMATE MISSION IS TO PROPOSE
SOLUTIONS THAT CAN BE USED TO
ENHANCE PEOPLE'S LIFE.
BEING PART OF THE PROJECT IS
DOING JUST THAT.
>> THE NATIONAL NATIONAL LF
MEDICINE'S FINANCIAL SUPPORT OF
THIS PROJECT HAS REALLY BEEN
INVALUABLE.
SO REALLY, THEY'VE BEEN
INSTRUMENTAL IN MAKING ALL OF
THIS RESEARCH POSSIBLE.
>> WITHOUT THAT, WE WOULD NOT
HAVE HAD THE CAPABILITY TO
COLLECT ALL THIS DATA TO DO ALL
THIS ANALYSIS.
AND GENERATE THE
PROMISING RESULTS WE HAVE RIGHT
NOW.
>> I'M SO PROUD OF OUR
INVESTIGATORS AND SO PLEASED
THAT WE'RE ABLE TO BRING THIS
KIND OF APPLICATION OF A.I. TO A
NEW COMMUNITY.
I WANTED TO TAKE A FEW MINUTES
TO TELL YOU WHAT'S BEEN
HAPPENING WITH OUR NLM
RESOURCES.
WE'VE BEEN BUSY OVER THE SUMMER.
ONE OF THE MOST EXCITING THINGS
THAT'S HAPPENED FROM THE LISTER
HILL CENTER IS THEY MAPPED THE
MODELS FROM FOUR DIFFERENT
CRITICAL DATA SYSTEMS TO A
STANDARD DATA MODEL.
THIS IMPROVES INTEROPERABILITY
AND ACTUALLY PROVIDES SOME TESTS
OF WHAT MIGHT BE FEASIBLE IN THE
FUTURE.
WE'VE BEEN VERY MUCH INVOLVED
WITH THE PUBLIC HEALTH RESPONSE.
THE GENBANK RELEASED SEQUENCES
FROM TWO CRITICAL VIRAL
OUTBREAKS THAT ARE HAPPENING
THIS SUMMER.
THESE REFERENCE SEQUENCES
ADDRESS BOTH THE POLIO VIRUS AND
THE MONKEYPOX.
WITHIN THE LIBRARY OPERATIONS,
WE ENHANCED THE MESH AND HEALTH
TERMINOLOGIES WITH RESPONSIVE
TERMINOLOGY ENHANCEMENTS TO MAKE
SURE THE MONKEYPOX TERMS WERE
VISIBLE IN OUR DATASETS.
IN TERMS OF TECHNICAL ADVANCES,
DB GAP, ONE OF OUR IMPORTANT
RESOURCES, THE DATABASE OF
GENOTYPES AND PHENOTYPES, NOW IS
ALLOWING INVESTIGATORS TO ACCESS
THE SERVICES THROUGH A SINGLE
SIGN-ON.
THE RAS, THE RESEARCH
AUTHENTICATION SERVICE, AND
WE'RE ALSO WORKING TO MAKE DBGAP
FHIR-ENABLED.
WE'LL BE HEARING A LOT MORE
ABOUT THE COMPARATIVE GENOMICS
RESOURCE.
THIS IS AN INVESTMENT
SPECIFICALLY TO BETTER
UNDERSTAND AND SUPPORT
COMPARATIVE GENOMICS BUT THE
RESOURCES THAT WE'RE BUILDING
UNDERNEATH THIS PROJECT HAVE
BROAD SERVICE ACROSS THE NLM, SO
WE'RE VERY PLEASED ABOUT HOW
THIS WORK IS ADVANCING OR
OVERALL PROTOCOL.
THE CLINVAR GRAPHICAL DISPLAY
NOW HAS AN OPPORTUNITY TO
HIGHLIGHT VERY SPECIFIC VARIANTS
WITHIN A GENE AND ALLOWS
INVESTIGATORS TO GET TO A LOCUS
OF INTEREST VERY QUICKLY.
CLINICAL TRIALS.DPOF, WHICH
WE'LL BE GETTING A LITTLE MORE
INFORMATION ABOUT THE
MODERNIZATION PROCESS TODAY,
LAUNCHED A BETA SITE, ADVANCE AD
SEARCH TOOL WHICH USERS HAVE
BEEN ASKING FOR AS WELL AS A
PROTOCOL SUBMISSION SYSTEM THAT
HAS BEEN MUCH EASIER FOR
INVESTIGATORS TO USE.
WE HELPED THE HHS CREATE A BUY
OG FEE ON LONG COVID RESEARCH
SUPPORTED BY THE FEDERAL
GOVERNMENT.
YOU MAY BE AWARE THERE'S REALLY
NO GOOD DEFINITION OF WHAT IS
LONG COVID, SO OUR LIBRARY
SCIENCE TEAMS CAME TOGETHER WITH
OUR FEDERAL COLLEAGUES AND PUT
THAT BIBLIOGRAPHY TOGETHER.
IT'S AVAILABLE, THESE SLEEDZ
WILL BE DISTRIBUTED TO YOU.
WE'RE VERY EXCITED TO SAY THAT
NLM MEETING ROOM WILL BE OPEN AS
OF OCTOBER 1ST.
NOW IT GOING TO BE A TEMPORARY
READING ROOM, YOU SEE IT PRETTY
SPARSELY SET UP.
IT IS OPEN ONLY BY APPOINTMENT
BUT THIS WILL ALLOW OUR
RESOURCES TO BE ACCESSED BY
OTHERS MORE QUICKLY.
I HAVE MIXED NEWS ABOUT THE
BUDGET.
WE ARE STILL IN THE PROCESS OF
HAVING NO SPECIFIC BUDGET FOR
FISCAL '23 SO WE ARE LIKELY TO
HAVE A CONTINUING RESOLUTION.
IF YOU LOOK AT THE BLUE ON THE
BOTTOM LINE, YOU'LL SEE THE
HOUSE AND THE SENATE NUMBERS ARE
PRETTY CLOSE TOGETHER.
SOME VARIATION OF $494 MILLION,
WHICH IS GREAT NEWS FOR ME SINCE
THIS IS ALMOST $100 MILLION
INCREASED SINCE I JOINED THE
LIBRARY SIX YEARS AGO.
THE PRESIDENT'S BUDGET IS A
LITTLE BIT LOWER.
THIS IS REALLY MORE AN ARTIFACT
OF WHEN THE BUDGETS GET
DEVELOPED THAN IT IS ACTUALLY A
RISK THAT WE WILL HAVE THAT MUCH
OF A LOSS IN OUR BUDGET.
IF YOU LOOK OVER THE LAST WE GO
NOW ALMOST EIGHT YEARS BACK, THE
PRESIDENT'S BUDGET LINE IS THE
BLUE LINE, THE HOUSE AND THE
SENATE ARE RESPECTIVELY THE GREY
AND THE YELLOW LINES, AND WE
CONTINUE TO SHOW GROWTH EVEN
THOUGH THE PRESIDENT'S BUDGET
DOESN'T ALWAYS KEEP UP TO
EXACTLY WHERE WE WANT TO BE.
I'M EXCITED TO ANNOUNCE SEVERAL
PERSONNEL UPDATE.
DR. RANDY MILLER KNOWN TO MANY
YOU HAVE AS A LEADING EXPERT
INTERNATIONALLY IN BIOMEDICAL
INFORMATICS HAS JOINED THE
APPLIED INFORMATICS BRANCH AS A
CONSULTANT AND A CONTRACTOR,
BRINGING HIS EXPERTISE TO LOOK
AT OUR RXNORM AND SOME OF OUR
TERMINOLOGY SYSTEMS.
WE'RE DELIGHTED TO HAVE HIM ON
BOARD.
AMANDA WILSON, WHO'S BEEN WITH
US NOW ACTUALLY FOR FIVE YEARS,
HAS BEEN APPOINTED THE DEPUTY
ASSOCIATE DIRECTOR FOR LIBRARY
OPERATIONS REFLECTING A BROADER
MANDATE FOR MANAGEMENT,
PERSONNEL AND BUDGET DECISIONS.
HER LEADERSHIP IS MUCH VALUED BY
THE NLM.
WE HAVE SOME NEW HIRES AND
PROMOTIONS TO TELL YOU ABOUT.
THREE OF THESE ARE IN THE
EXTRAMURAL PROGRAM.
ALISON DENNIS -- KEVIN GATES IN
THE OFFICE OF COMPUTER AND
COMMUNICATIONS SYSTEMS FOR MANY
YEARS NOW HAS BEEN APPOINTED TO
CHIEF ASSISTANCE TECHNOLOGY
BRANCH AFTER A SEARCH.
WE'RE ALSO THRILLED TO HAVE FIVE
NEW NLM ASSOCIATE FELLOWS.
NLM ASSOCIATE FELLOWS SPEND A
YEAR AT THE NLM, EITHER
PHYSICALLY OR VIRTUALLY, WORKING
ON SPECIALIZED PROJECTS TO
EXPAND THEIR SKILLS IN LIBRARY
SCIENCE.
WE'RE DELIGHTED TO HAVE THIS
SHARP TEAM OF YOUNG PEOPLE
JOINING US NOW.
I WANT TO TURN TO A POLICY AND
LEGISLATION UPDATE.
>> THANK YOU, PATTI.
AND GOOD MORNING.
GLAD TO BE WITH YOU THIS
MORNING.
I WANTED TO SHARE SOME BRIEF
POLICY AND LEGISLATIVE UPDATES
AS ALWAYS, I ENCOURAGE YOU TO
REVIEW THE WRITTEN UPDATE WE
PROVIDE FOR MORE DETAILS AS WELL
AS MORE INFORMATION.
>> SO I DID WANT TO PROVIDE AN
UPDATE THAT IS NOT ON THE SLIDE,
AND I AM PUTTING A LINK IN THE
CHAT, BUT YESTERDAY THE
PRESIDENT ISSUED AN EXECUTIVE
ORDER TO ADVANCE BIOTECHNOLOGY
AND BIOMANUFACTURING TOWARD
INNOVATIVE SOLUTIONS IN VARIOUS
SECTORS OF THE U.S. ECONOMY
INCLUDING HEALTH AS WELL AS
NATIONAL AND ECONOMIC SECURITY.
THE EXECUTIVE ORDER TOUCHES ON
SEVERAL AREAS OF INTEREST TO
NLM, INCLUDING CROSS-GOVERNMENT
COORDINATION.
IN PARTICULAR, I WANTED TO DRAW
YOUR ATTENTION TO SECTION
4 FOCUSED ON DATA FOR THE
BIOECONOMY, INCLUDING ENSURING
THAT HIGH QUALITY SECURE
DATASETS ARE EASILY ACCESSIBLE
FOR BREAKTHROUGHS FOR THE U.S.
BIOECONOMY.
SECTION 10 WHICH IS FOCUSED ON
CREATING AND MAKING PUBLICLY
ACCESSIBLE LEXICON FOR THE
BIOECONOMY, AND SECTION 12,
WHICH IS FOCUSED ON ENGAGING
WITH INTERNATIONAL PARTNERS ON,
AMONG MANY THINGS, PROMOTING
OPEN SHARING OF SCIENTIFIC DATA,
INCLUDING GENETIC SEQUENCE DATA.
NLM STAFF WILL BE ENGAGING IN
RELEVANT NIH ACTIONS TO
IMPLEMENT THE EXECUTIVE ORDER.
IN ADDITION TO THAT, ON
AUGUST 25, THE WHITE HOUSE
OFFICE OF SCIENCE AND TECHNOLOGY
POLICY ISSUED UPDATED POLICY
GUIDANCE REGARDING PROVIDING
EXPEDITED ACCESS TO THE RESULTS
OF FEDERALLY FUNDED RESEARCH
OVER THE COMING MONTHS, NIH WILL
WORK TO DEVELOP AND SHARE ITS
PLAN FOR IMPLEMENTING THE POLICY
GUIDANCE, AND NIH INTENDS TO
WORK WITH INTERAGENCY PARTNERS
AND STAKEHOLDERS TO REVISE ITS
CURRENT PUBLIC ACCESS POLICY TO
ENABLE RESEARCHERS, CLINICIANS,
STUDENTS AND THE PUBLIC TO
ACCESS NIH RESEARCH RESULTS
IMMEDIATELY UPON PUBLICATION.
WE STAND READY TO SUPPORT NIH'S
IMPLEMENTATION OF THIS UPDATED
GRAY DANCE UPDATE
GUIDANCE THROUGH PUBMED CENTRAL
AND OTHER RELEVANT DATA
REPOSITORIES.
IN ADDITION TO THAT, YOU MAY
HAVE READ THAT IN EARLY AUGUST,
OSTP ALSO ISSUED, ALONG WITH
SCIENCE AND TECHNOLOGY LEADERS
AND ADVISORS FROM 19 GOVERNMENTS
A CALL TO ACTION ASKING MEMBERS
OF SCHOLARLY PUBLISHING
COMMITTING TO VOLUNTARILY MAKE
THEIR MONKEYPOX RELATED RESEARCH
ACCESSIBLE IN HUMAN AND MACHINE
READABLE FORMS.
AS THIS PAST THURSDAY, NLM
ANNOUNCED ITS NEW PUBLIC HEALTH
EMERGENCY MONKEYPOX WEBPAGE
WHICH HELPS INDIVIDUALS FIND
MONKEYPOX RELATED LITERATURE AND
PROVIDES ADDITIONAL INFORMATION
TO ASSIST PUBLISHERS INTERESTED
IN PARTICIPATING IN THIS EFFORT.
AND THEN THE LAST ITEM I WANTED
TO HIGHLIGHT ON THE POLICY FRONT
IS A GUIDANCE ISSUED AGAIN BY
OSTP IN MAY OF THIS YEAR THAT
WAS DEVELOPED BY THE NATIONAL
SCIENCE AND TECHNOLOGY COUNCIL
SUBCOMMITTEE ON OPEN SCIENCE
DEFINING DESIRABLE
CHARACTERISTICS OF REPOSITORIES
RESULTED FROM FEDERALLY FUNDED
RESEARCH.
GIET DANCE AIMS TO PROVIDE
CONSISTENCY ACROSS FEDERAL
AGENCIES WITH REGARDS TO MAKING
DATA FINDABLE, ACCESSIBLE,
INTEROPERABLE AND REUSABLE OR
FAIR WHILE MAINTAINING
APPROPRIATE PROTECTIONS FOR DATA
PRIVACY AND SECURITY.
THIS GUIDANCE WAS DEVELOPED WITH
A LOT OF INPUT FROM NLM AND NIH
AND IS CONSISTENT WITH
SUPPLEMENTAL INFORMATION THAT
HAS BEEN ISSUED BY NIH TO
ACCOMPANY THE DATA MANAGEMENT
AND SHARING POLICY.
ON THE LEGISLATIVE FRONT AS
PATTI MENTIONED, CONGRESS IS
BACK IN SESSION AND WE ARE
MONITORING THE 2023
APPROPRIATION PROCESS.
THERE HAVE BEEN APPROPRIATION
BILLS INTRODUCED IN BOTH THE
HOUSE AND THE SENATE, BUT IT IS
EXPECTED THAT WE WILL HAVE A
CONTINUING RESOLUTION.
THE HOUSE HAD DISCUSSED A
POTENTIAL RESOLUTION THAT WOULD
GO THROUGH DECEMBER 16 AT 2022
ENACTED LEVELS TO BE CONSIDERED
POSSIBLY THIS WEEK BUT THE
TIMING FOR THAT REMAINS
UNCERTAIN.
THE SENATE MIGHT ACTUALLY MOVE
FIRST ON A CONTINUING RESOLUTION
TO FUND THE FEDERAL GOVERNMENT
PAST SEPTEMBER 30TH BUT NO
ADDITIONAL INFORMATION IS
AVAILABLE ABOUT THAT AT THIS
TIME.
WITH THAT, I'LL TURN IT BACK
OVER TO PATTI.
>> THANKS VERY MUCH, TERESA.
SHE MENTIONED THE AFLOUNCEMENTS
YESTERDAY ABOUT THE BIOECONOMY.
FOR THOSE FOLLOWING THE ARPA-H
TRAJECTORY, WE'RE VERY EXCITED
TO HAVE HEARD THE PRESIDENT MAKE
AN INTENT TO APPOINT DR. LENNAE
AND I'M GOING TO TRY THIS,
WIGRAZEN, TO THE DIRECTOR OF THE
ARPA-H.
SHE'S BEEN WITH INGO FOR THE
LAST FIVE YEARS, ALSO HAS
EXPERIENCE WITH DARPA.
WE'RE VERY EXCITED SHE BRINGS A
BLENDING OF BIOLOGICAL AND
TECHNOLOGICAL EXPERTISE TO THIS
POSITION.
AS YOU RECALL, ARPA-H WILL BE
WITHIN THE NIH PORTFOLIO AT THE
EXACT LOCATION OF THE ARPA-H IS
NOT QUITE KNOWN YET, THERE ARE A
LOT OF STATES ENGAGED IN THAT.
LET ME STOP NOW AND TURN TO
HEIDI TO SEE IF YOU HAVE ANY
COMMENTS OR QUESTIONS ABOUT THE
VARIETY OF TOPICS THAT WE
BROUGHT UP DURING THE DIRECTOR'S
REPORT TODAY.
HEIDI?
>> THANKS, PATTI.
THAT WAS A WEALTH OF TERRIFIC
INFORMATION.
I HAVE A QUESTION BUT ALSO IF
ANY OTHERS FOR PATTI WANT TO
RAISE YOUR HAND, I'LL CALL ON
YOU WHEN I START SEEING HANDS
UP.
ONE AREA THAT I'VE RECENTLY
BEEN -- AS PART OF THE ALL-OF-US
PROGRAM BEEN STRUGGLING WITH IS
ENABLING INTERNATIONAL ACCESS TO
DATASETS.
THAT THE ALL-OF-US RESEARCH
PROGRAM IS INTENDING TO ALLOW
WIDE GLOBAL ACCESS, BUT THAT'S
BEEN HINDERED, AND I WONDER TO
WHAT EXTENT THE NLM AND NCBI IS
PLAYING ANY ROLE IN THAT, OR THE
ALL-OF-US IS REALLY TRYING TO
DEAL WITH THAT THEMSELVES WITHIN
THE DATA RESEARCH CENTER THAT IT
SUPPORTS.
DO YOU OR -- STEVE SHERRI IS ON,
HE MIGHT KNOW, HAVE A SENSE OF
WHAT ROLE NLM PLAYS IN
FACILITATING INTERNATIONAL
ACCESS TO DATASETS?
>> SO THE QUESTION ABOUT
INTERNATIONAL ACCESS TO DATASETS
IS THE MUCH BROADER THAN THE
ALL-OF-US.
WE HAVE ISSUES ABOUT INNATIONAL
ACCESS TO STRIDES, TO CLINVAR,
TO THINGS LIKE THAT.
SO I'M GOING TO ASK JERRY OR
TERESA TO START TO COMMENT AND
STEVE IF YOU WANT TO WEIGH IN,
SPECIFICALLY WITH RESPECT TO ALL
YOU, I WANT TO REMIND YOU THAT
ALL-OF-US IS AN EXTRAMURALLY
FUNDED PROGRAM.
THE HOUSING OF THE DATASET IS
MANAGED THROUGH VANDERBILT
UNIVERSITY.
SO THEY DO OPERATE SOMEWHAT
INDEPENDENTLY.
WE CERTAINLY PROVIDE THEM WITH
TECHNICAL ADVICE AND ASSISTANCE
AS NEEDED.
JERRY?
>> I THINK IT WAS BECAUSE I WAS
UNDERSTANDING THAT THE ERA
COMMON SYSTEM IS WHAT IS
ACTUALLY AUTHENTICATING THE
RESEARCH OR ACCESS, AND
THEREFORE IN SOME WAYS, EVEN
THOUGH IT'S BEING HOUSED THROUGH
BROAD AND VANDERBILT, THE
DATASETS, I WONDERED WHAT ROLE,
YOU KNOW, WE'RE PLAYING.
BUT YES, GO AHEAD.
>> I CAN SAY JUST A WORD ABOUT
THAT AND I HESITATE TO DO THIS,
TO SPEAK ON BEHALF OF THE
ALL-OF-US PROGRAM, BUT AS YOU
KNOW, THEY'VE BEEN DOING A
PHASED ACCESS PROGRAM.
THERE WAS SOME PHASED ACCESS FOR
I THINK NIH STAFF THAT'S MOVING
TO GRANTEES AND OTHERS WITH ERA
COMMONS ACCOUNTS, AND I THINK --
I DON'T KNOW WHAT THEIR FUTURE
PLAN IS IN TERMS OF BROADENING,
AND SOME OF THAT WILL COME DOWN
TO SOME TECHNICAL FEATURES AND
SO FORTH IN TERMS OF PROVIDING
ACCESS.
WE HAVE PROVIDED SOME
CONSULTATION TO THEM ON A
VARIETY OF ISSUES, INCLUDING
THEY WERE TRYING TO RUN A PUBLIC
ACCESS POLICY TO THE RESULTS OF
THEIR -- IT'S NOT THEIR FUNDED
RESEARCH, BUT PUBLIC ACCESS TO
PUBLICATIONS REPORTING ON
RESEARCH THAT WERE CONDUCTED
WITH ALL-OF-US DATA.
AND SO THOSE CONVERSATIONS
CONTINUE, AND IF THERE ARE
PARTICULAR ISSUES AROUND
INTERNATIONAL ACCESS TO THE
DATA, WE CAN -- WE HAVE
PLATFORMS FOR ENGAGING THOSE,
SOCIAL PLATFORMS, I SHOULD SAY,
FOR TAKING THOSE TO THE
ALL-OF-US PROGRAM AND DISCUSSING
WITH THEM.
STEVE OR TERESA, I DON'T KNOW IF
YOU'VE GOT ANYTHING TO ADD
THERE.
>> SO I THINK, HEIDI, I'M NOT
100% SURE, AGAIN, BECAUSE IT'S
ALL-OF-US AND I DON'T KNOW THE
DETAILS OF THEIR APPROVAL
PROCESS, YOU MENTIONED ERA AND
THAT MAKES ME THINK THEY'RE
TRYING TO USE THE RAS SYSTEM,
WHICH IS BASED ON ERA AND THAT'S
THE RESEARCHER AUTHORIZATION
SYSTEM.
IT'S THE INFRASTRUCTURE WE
OPERATE IN PARTNERSHIP WITH CIT,
AND IT IS REPLACING DIRECT DBGAP
APPROVAL, SO ALL THE
CREDENTIALING AND THE APPROVAL
RIGHTS ARE RECORDED AT CIT AND
CONNECTED IN RAS TO ERA
IDENTITIES.
BUT THE IDENTITIES CAN ACTUALLY
USE OPEN ID IN THE BROADER
COLLECTION THAN JUST ERA, SO IT
DOES EXTEND TO ACADEMIC
IDENTITIES AND PUBLIC
IDENTITIES.
INTERNATIONAL USERS CAN REQUEST
DATA TO THE SETS IN THAT SYSTEM
IF THEY HAVE AN IDENTITY IN THE
SYSTEM.
SO THERE ARE MANY INTERNATIONAL
RESEARCH INSTITUTIONS THAT WORK
AND GIVE ACCESS TO DBGAP DATA.
I'M THINKING IN ANALOGY TO ALL
OF US IN A SIMPLER PROCESS UNDER
RAS.
THERE ARE SOME INSTITUTIONS THAT
HAVE TROUBLE OR HAVE HAD TROUBLE
IN THE PAST GETTING THEIR
INVESTIGATORS REGISTERED IN ERA,
AND THEY'RE COMING FROM THE
DEVELOPING WORLD.
I KNOW OF EXAMPLES IN MALAYSIA
AND OTHER PARTS OF SOUTHEAST
ASIA, BECAUSE THE PROCESS USED
TO INVOLVE AN INSTITUTIONAL
RECOGNITION COUPLE TO DUN &
BRADSTREET NUMBERS SO THAT
TURNED INTO KIND OF AN ECONOMIC
REGISTRATION COORDINATION
PROBLEM.
NIH HAS BEEN AWARE OF THIS FOR
FIVE OR SIX YEARS, THEY'VE TRIED
TO STEP AWAY AND I KNOW THEY'VE
DROPPED THAT DUN & BRADSTREET
REGISTRATION REQUIREMENT, SO
INSTITUTIONS CAN THEN GET
REGISTERED, RECOGNIZED, AND THEN
EMPLOYED INDIVIDUALS CAN.
SO THAT'S ONE FRAMEWORK.
THE OTHER WAY I WOULD THINK I
WOULD MENTION ABOUT COORDINATION
ON THIS IS GA4GH, BECAUSE WE DO
TRY TO USE THOSE PRINCIPLES
AROUND RESTRICTION OF USE AND
DESCRIPTION OF IDENTITY.
SO I THINK THERE'S STILL ROOM
FOR INNOVATION THERE.
I DON'T KNOW IF THAT'S HELPFUL
OR ALIGNED.
THE LAST POINT I WOULD MAKE IS
THAT I THINK THE ALL-OF-US
ACCESS IS PROBABLY TRYING TO
ALIGN WITH THE LARGER COMMON
FUND ECOSYSTEM, USING A COMMON
FRAMEWORK ACROSS ALL OF THEIR
MODALITIES OF DATA THAT THEY'RE
HOLDING.
AGAIN, I DON'T KNOW IF THAT'S
ALL ON RAS, BUT THAT'S WHAT
WE'RE TRYING TO DO EXTRA STEEJ
STRATEGICALLY, IS ONE POINT OF
ACCESS OPERATED THROUGH CIT.
>> THANKS, STEVE.
THAT'S HELPFUL.
I THINK THIS IS JUST A REALLY
IMPORTANT AREA OF EFFORT, SO
THAT WE CAN HAVE 18 DIFFERENT
APPROACHES TO THIS AND I KNOW
THERE'S SIGNIFICANT CRITICISM
RIGHT NOW OF LACK OF ACCESS TO
THE ALL-OF-US DATASET, AND
THAT'S NOT THE ONLY ONE THAT'S
IMPORTANT, BUT JUST REALLY
EMPHASIZING THE IMPORTANCE OF
FOCUSING ON THIS AREA.
>> EXCUSE ME.
JUST A SECOND.
TERESA, DID YOU HAVE ANYTHING
YOU WANT TO ADD TO THAT?
>> NOT ON THAT.
LIKE JERRY SAID, WE DON'T MANAGE
THE ALL-OF-US RESEARCH PROGRAM
SO IT WOULD BE GOOD TO FOLLOW UP
WITH THEM AND GET CLARIFICATION
ON WHAT THEY'RE PLANNING.
>> AND DIANE, DID YOU HAVE
SOMETHING YOU WANTED TO ADD IN?
>> NO.
>> DIANE IS HERE IN THE ROOM
WITH ME.
OKAY.
I WANT TO ALSO SAY THAT WE
ARE -- THE CHALLENGES OF
ACCESSING NIH DATA IS COMMON
ACROSS BOTH INTERNATIONAL AND
FRANKLY CITIZEN SCIENTISTS, AND
WE'RE LOOKING FOR WORKING WITH
CIT AND LOOKING AT WAYS -- AT A
CITIZEN SCIENTIST THAT'S NOT
AFFILIATED WITH A SPECIFIC
ORGANIZATION COULD ALSO BE ABLE
TO HAVE ACCESS, PARTICULARLY TO
RESOURCES LIKE THE ALL-OF-US
PROGRAM.
THERE ARE -- THERE'S A GREAT
OPENNESS OF DATA ACROSS THE
FEDERAL GOVERNMENT, AND WE ARE
TRYING TO ALIGN POLICIES TO
PREVENT SILOING AND ENCOURAGE
ENGAGEMENT.
AND HEIDI, ONCE THERE ARE NO
MORE QUESTIONS, I SEE DR. CLARK
HAS JOINED US.
>> SURE.
ANY OTHER QUESTIONS?
>> TERESA, DID YOU HAVE ANOTHER
COMMENT YOU WANTED TO MAKE ON
SOMETHING?
>> JUST MORE BROADLY, PATTI, YOU
ALLUDED TO THE FACT THAT
INTERNATIONAL GENOMIC DATA
SHARING IS SOMETHING WE THINK OF
IN THE CONTEXT OF OUR
REPOSITORIES, MANY OF WHICH ARE
PUBLICLY ACCESSIBLE.
>> THANK YOU.
>> SO DR. CLARK HAS JUST JOINED
US, OUR NEWEST PENDING BOARD
MEMBER, AND ANDY, WE HAD THE
OTHER TWO NEW MEMBERS BRIEFLY
INTRODUCE THEMSELVES, SO WE'D
LOVE TO LET YOU TAKE A MINUTE OR
TWO TO SHARE A LITTLE BIT ABOUT
YOURSELF.
>> I'M SORRY I'M LATE.
I JUST GOT OUT OF CLASS, TAKING
A HORSE IN -- A COURSE IN .
LIVELY GROUP.
MY BACKGROUND IS IN POPULATION
GENOMICS, STANFORD, 1980 DOING
WORK FOR PRIMARILILY DROSOPHILA
BUT THAT MOVED MORE AND MORE
INTO HUMAN CONTACT AS WELL,
WORKING WITH EARLY SNP PROJECTS.
CONSULTANT WORKING A DAY AWEEK
AND GOT INTO THE INTEGRATION OF
POPULATION GENETICS INTO THE
SOLERA ASSEMBLER AND THE SORT OF
EARLY IDEAS OF THINKING ABOUT
GENOME-WIDE SNPs WAS SORT OF A
BIG THING.
WE'VE DONE A LOT OF WORK AT
COMPLEX TRADES, CARDIOVASCULAR
DISEASE WORK, MOST RECENTLY
WE'RE DOING WORK WITH SATELLITE
REPEATS AND THE ROLE OF
SATELLITE REPEATS IN HAVING
TRANS EFFECTS ON EPIGENETIC
STATES.
TELOMERE PROJECT, WHAT'S GOING
ON AROUND CENTROMERES, EVOLUTION
OF CENTROMERES.
THESE ARE PROBLEMS THAT ARE OF
GREAT INTEREST TO ME.
>> TERRIFIC.
WE WELCOME YOUR PARTICIPATION
GOING FORWARD.
SO WELCOME.
I THINK WITH THAT, SO I DID WANT
TO JUST MENTION THAT THE
BREAKOUT ROOMS ARE OPEN SO IF
THE PRESENTERS WANT TO JUMP IN
QUICKLY, THEY ARE NOW AVAILABLE
TO JOIN IN, BUT WE'LL BE
STARTING THOSE BREAKOUT SESSIONS
RIGHT AT 11:15 IN A FEW MINUTES.
ANYTHING ELSE BEFORE WE ALL
TRANSITION OVER TO THE
BREAKOUTS?
I THINK THAT'S IT.
SO YOU SHOULD GET AN INVITATION
COME UP.
FOR WHERE YOU'RE ASSIGNED.
IF THERE'S ANY LACK OF CLARITY,
SOMEBODY CAN HELP APPOINT OR
SEND YOU IN THE RIGHT DIRECTION.
>> THANK YOU VERY MUCH, HEIDI.
YOU DID A GREAT JOB FOR YOUR
FIRST HALF OF BOARD MEETING.
ONCE THE BREAKOUTS ARE OVER,
YOU'LL BE BREAKING FOR LUNCH
BREAK AND THEN WE'LL SEE YOU AT
12:45.
>>DOES IT SAY SUMMARY SLIDE AND
REPORT OUT?
>> WE SEE THE EXPERTISE THE OSI
TEAM SLIDE.
>> OKAY.
NEST NOT DOING IT.
SORRY ABOUT THIS, FOLKS.
>> MIKE, I HAVE IF YOU'D LIKE ME
TO SHARE.
>> I'VE GOT IT.
THANKS FOR THAT OFFER.
SORRY ABOUT THAT, FOLKS.
WELL, HI, EVERYBODY.
I'M MIKE HUERTA.
I WAS VOLUNTEERED TO REPORT OUT
FROM OUR GROUP.
I'M THE ASSOCIATE DIRECTOR OF
NLM FOR STRATEGY, AND I ALSO
DIRECT THE OFFICE OF STRATEGIC
INITIATIVES, WHICH HAS A NUMBER
OF FUNCTIONS INCLUDING LEADING
AND DEVELOPING DATA SCIENCE AND
OPEN SCIENCE INITIATIVES, KIND
OF BROADLY, AND AT A STAFFING
KIND OF LEVEL.
AND TECHNOLOGY TRANSFER FOR THE
INTRAMURAL RESEARCH PROGRAM, AND
LAST BUT NOT LEAST, THE OFFICE
IS ALSO RESPONSIBLE FOR
STRATEGIC PLANNING, MONITORING
OF THE IMPLEMENTATION OF THOSE
PLANS, ANALYZING AND REPORTING
ON NLM ACCOMPLISHMENT, AND FOR
STRATEGIC EVALUATION.
SO TODAY, WE TALKED ABOUT IN THE
GROUP CHANGES IN THIS LATTER
SPACE, SPECIFICALLY STRATEGIC
PLANNING AND NIH USED TO BE VERY
ISOLATED, INSTITUTE CENTER AND
OFFICE BY SINCE TEUT CENTER D
OFFICE.
A FEW YEARS AGO A NEW OFFICE WAS
ESTABLISHED IN THE NIH OFFICE OF
THE DIRECTOR CALLED THE OFFICE
OF EVALUATION, OEPR.
PERFORMANCE AND REPORTING.
AND THEY ARE NOW MUCH MORE
INVOLVED, THEY BEING NIH CENTRAL
IS MUCH MORE INVOLVED IN
COORDINATING STRATEGIC PLANS
ACROSS NIH.
I SHOULD SAY THAT THERE ARE SOME
27 INSTITUTES AND CENTERS AT NIH
AND ANOTHER 22 OFFICES.
SO FOR EXAMPLE, THE ALL-OF-US
PROGRAM WE TALKED ABOUT EARLIER
TODAY IS RUN OUT OF AN OFFICE.
IT'S NOT RUN OUT OF ONE OF THE
INSTITUTES OR CENTERS.
SO THAT'S WHERE YOU SEE ICO.
SO THERE ARE MANY STRATEGIC
PLANS NOT JUST FOR EACH OF THESE
ORGANIZATIONAL UNITS BUT FOR
EFFORTS SUCH AS COVID RESEARCH
ACROSS NIH AND SO FORTH.
THE OFFICE OF STRATEGIC
INITIATIVES HERE AT NLM IS
RESPONSIBLE FOR CONNECTING OUR
INFORMATION, OUR
ACCOMPLISHMENTS, OUR
COLLABORATIONS AND SO FORTH,
WITH THESE OTHER PLANS, SO WE
TALKED ABOUT IN OUR BREAKOUT
GROUP SOME OF THE THINGS THAT
ARE HAPPENING IN THE SPACE AND
NIH.
SO WE HAVE -- IN ADDITION, I
THINK WE'VE HEARD ABOUT THE
REEP, THE RACIAL AND ETHNIC
EQUITY PLAN THAT IS NOW BEING IN
PLACE, IT'S ACTUALLY IN PLACE,
AND AGAIN, THESE KINDS OF THINGS
WILL NEED TO BE REPORTED ON AS
WELL.
SO AS THESE PLANS MULTIPLY AND
AS DATA CALLS ABOUT THEM
MULTIPLY, AND I SHOULD SAY THAT
THERE'S ALSO THE EVIDENCE ACT
THAT HAS BEEN IMPLEMENTED NOW AT
NIH, WHICH WILL REQUIRE MORE
EVALUATION, ANALYSIS AND
DATA-DRIVEN DECISION-MAKING.
WE ARE DOING A NUMBER OF THINGS
WITHIN THE OFFICE OF STRATEGIC
INITIATIVES TO TRY TO STREAMLINE
SOME OF THIS.
WE HAVE JUST A FEW STAFF MEMBERS
THAT DO THIS FOR ALL OF NLM, SO
ONE OF THE THINGS THAT WE'VE
DONE IN THE LAST FEW MONTHS IS
TO START ENGAGING THE INDIVIDUAL
DIVISIONS AND OFFICES CH OF ND
REPORTING THEIR INFORMATION TO
US IN MORE FINAL FORM.
THIS NOT ONLIESES THE ONE
SELECTING WHAT THEY REALLY WANT
TO BE HIGHLIGHTED RATHER THAN
THE OSI DETERMINATION OF THAT
INFORMATION.
WE'VE ALSO WORKED CLOSELY WITH
THE OFFICE OF COMPUTING AND
COMMUNICATION SYSTEMS AT NLM TO
DEVELOP AN INFORMATION SYSTEM
FOR INTERNAL USE TO COLLECT
INFORMATION ABOUT WHAT NLM IS
DOING IN STRATEGIC INITIATIVES
AND OTHER PROGRAMS AND
ACTIVITIES IN SUPPORT OF THE
STRATEGIC PLAN.
THIS IS GOING TO NOW BE A
COLLECTION OF INFORMATION THAT
WE CAN GO IN AND MINE FOR OTHER
PURPOSES SO WE HAVE THE
INFORMATION IN ONE PLACE, WE CAN
REPURPOSE IT FOR DIFFERENT
REPORTING, OR EVALUATION
ACTIVITIES, OR OTHER KINDS OF
PROGRAMMATIC FUNCTIONS.
I MINGS MERNTION -- I M.
WE HAVE THREE IMPLEMENTATION
GROUPS FOR THAT AND THESE ARE
LOOKING AT INCREASING
PARTICIPATION IN THE WORKPLACE,
CULTURAL ASSESSMENTS, AND
EVALUATING RECOGNITION,
RETENTION AND PROMOTIONS, OH,
AND ESTABLISHING A MANAGEMENT
COMMITMENT PLAN FOR ENHANCING
WORKFORCE, ETHNIC AND RACIAL
DIVERSITY AND INCLUSIVITY.
SO WE WILL BE -- AGAIN, THESE
ARE MORE ACTIVITIES THAT NEED TO
BE MONITORED AND REPORTED ON,
AND WE THINK THE SYSTEM WE
DEVELOPED WITH OCCS WILL HELP US
DO THAT IN A NUMBER OF DIFFERENT
WAYS.
WE ALSO TALKED ABOUT A NUMBER OF
THINGS THAT ARE HAPPENING AT
NIH.
AS I MENTIONED THERE IS THIS NEW
OFFICE AT NIH THAT IS PROMOTING
AND COORDINATING SOME OF THIS SO
NOW EVEN THOUGH WE HAVE A
10-YEAR EXTRA TEE STRATEGIE
WORKING FROM RIGHT NOW, THE 21ST
CENTURIES CURES ACT WE HAVE
MANDATE EVERY FIVE YEARS, THIS
OFFICE AT NIH IS COORDINATING
THAT.
SO NOW THERE ARE SPECIFIC
TEMPLATE FOR THE PLANS AS WELL
AS GUIDELINES AS TO HOW TO
PROCESS THESE.
WE ARE WORKING WITH THE NHOD,
THAT OFFICE AND SOME OTHER
OFFICES, TO DEVELOP A SIMILAR
SYSTEM TO THIS OCCS SYSTEM, BUT
FOR NIH-WIDE USE.
AGAIN THE IDEA IS THAT ALL OF
THE NIH WILL BE SUBMITTING
INFORMATION TO THAT SYSTEM,
WHICH IS CALLED START, AND THE
IDEA IS THE INFORMATION IN THAT
SYSTEM CAN BE MAPPED TO VARIOUS
PLANS, AND IT CAN BE REPURPOSED
IF NEEDED.
FINALLY WE HAVE BEEN WORKING ON
MAPPING NLM ACTIVITIES TO A
NUMBER OF THE MORE SALIENT AND
RELEVANT NIH-WIDE PLANS,
INCLUDING THE NIH-WIDE STRATEGIC
PLAN, AS WELL AS MORE TOPICAL
PLANS SUCH AS THE NIH STRATEGIC
PLAN FOR COVID RESEARCH.
IN ALL OF THIS WORK, WE ARE
TRYING TO EMPHASIZE ON REPORTING
OUT OF WHAT NLM IS DOING AND HAS
DONE.
WHAT THE IMPACT IS, AND WHAT THE
OUTCOMES ARE AS OPPOSED TO JUST
SAYING, YOU KNOW, WE'VE REACHED
5,000 USERS FOR THIS DATA
RESOURCE YESTERDAY.
YOU KNOW, WHAT'S THE IMPACT OF
THAT?
AND SO THIS, AGAIN, GETS US BACK
TO WORKING MORE DIRECTLY WITH
THE STAFF THAT ARE RUNNING THESE
SPECIFIC ACTIVITIES, AND ASKING
THEM WHAT THE IMPACT WAS, WAS
SUPPOSED TO BE AT THE OUTSET AND
WAS THAT OUTCOME WHAT ENDED UP
TAKING PLACE.
WE THINK BY REPORTING OUTCOMES
AND IMPACT, WE'LL BE ABLE TO
SHOW THE SUCCESS THAT NLM HAS
AND MAKE IT MORE OBVIOUS ACROSS
NIH AND BEYOND, THE
CONTRIBUTIONS THAT NLM MAKES.
SO AT THE END OF OUR
PRESENTATION ON THIS, WE ASKED
THE BOARD MEMBERS IN THIS
WORKING GROUP HOW THEY MEASURED
SUCCESS AND IMPACT OF THEIR
VARIOUS PROGRAMS OR ASPECTS AT
THEIR INSTITUTIONS, AND WE HAD A
GOOD DISCUSSION OF THAT, AND
THAT LED TO DISCUSSION OF A
NUMBER OF OTHER TOPICS THAT I
WON'T GET INTO HERE, BUT WERE
VERY INTERESTING AND I THINK
WILL BE USEFUL.
SO WITH THAT, LET ME TURN OFF MY
SLIDES AND ASK IF THERE ARE ANY
QUESTIONS OR ASK IF ANYBODY ELSE
ON THE WORKING GROUP WOULD LIKE
TO ADD ANYTHING TO WHAT I'VE
JUST HAD TO SAY.
>> THANKS, MIKE.
THAT WAS A GOOD OVERVIEW OF OUR
MAIN TOPIC.
ANY QUESTIONS FOR MIKE?
>> I WAS WONDERING IF YOU WANTED
TO TALK A LITTLE ABOUT SOME OF
THE ISSUES YOU BROUGHT UP
RELATED TO PUBLICATION.
>> I'M HAPPY TO SUMMARIZE THAT.
SO ONE OF THE THINGS I BROUGHT
OF WAS, WITH THIS RECENT
PLANNING AROUND NO EMBARGO DATE
FOR NIH-FUNDED PROJECTS IN TERMS
OF PUBLICATIONS, REALLY STARTING
TO THINK ABOUT THE ROLE OF THE
NLM IN THAT ROLLOUT AND, IN
FACT, NOT ONLY JUST THINKING
ABOUT HOW TO SUPPORT A VERY
SPECIFIC GOAL OF NO EMBARGO FOR
PUBLICATIONS, BUT THE ENTIRE
BIOMEDICAL PUBLICATION SYSTEM
AND THAT NLM MIGHT CONSIDER
PLAYING THE ROLE IT DOES WELL,
WHICH IS CONVENING AS A NEUTRAL
PARTY STAKEHOLDERS ACROSS THE
PUBLISHING ECOSYSTEM FROM
JOURNAL EDITORS TO PROFESSIONAL
SOCIETIES THAT HAVE THEIR OWN
JOURNALS, TO THE ACADEMIC
SYSTEMS THAT SUPPORT PROMOTION
AND ALL THE DIFFERENT ELEMENTS
THAT FACTOR IN, AND REALLY
STARTING TO HAVE SOME STRATEGIC
DISCUSSIONS ABOUT HOW TO THINK
ABOUT THE PUBLISHING ECOSYSTEM.
AND I'M JUST GOING TO OPEN THE
DOOR BEFORE MY CATS CLAW IT
DOWN.
>> MAYBE I CAN JUST SAY A WORD
ABOUT THAT.
THE NIH WILL BE TAKING UP THE
PROCESS DEVELOPING OUR PLAN FOR
HOW WE'RE GOING TO IMPLEMENT OUR
POLICIES TO ACHIEVE THE GOALS
THAT ARE OUTLINED IN THAT NEW
MEMO, AND NLM HAS RECOGNIZED A
KEY PARTNER, WE'RE HELPING, IN
ESSENCE, CO-LEAD SOME OF THE
EFFORTS ON THAT, IN PARTICULAR
AROUND THE PUBLICATIONS EMBARGO
ISSUE.
I KNOW THERE'S A BIT OF
DISCUSSION ABOUT HOW BEST TO
ORGANIZE STAKEHOLDER
CONSULTATIONS AND SO FORTH.
WE, NLM, KIND OF ON BEHALF OF
NIH, HAVE ALSO BEEN
PARTICIPATING FOR THE LAST FEW
YEARS IN A NATIONAL ACADEMIES
SPONSORED ROUNDTABLE ON ALIGNING
INCENTIVES FOR OPEN SCIENCE,
WHICH HAS ALSO BEEN TRYING TO
PULL TOGETHER ACROSS THE
SCIENCES WITHOUT A BIOMEDICAL
FOCUS.
SOCIETIES, OTHERS IN SCHOLARLY
COMMUNICATION, UNIVERSITIES AND
SO FORTH TO HELP BUILD OUT A
TRANSITION TOWARD MORE OPENNESS
AND IMMEDIATE ACCESS.
SO THAT MIGHT ALSO BE ANOTHER
PLATFORM FOR SOME OF THE ISSUES
THAT YOU'RE RAISING.
I THINK WE CERTAINLY SEE NLM AS
PLAYING A KEY ROLE HERE AS A
CONVENER AND THOSE WHO CAN BRING
SOME ALSO INTO THE BROADER NIH
DISCUSSIONS UNDERSTANDING OF THE
SCHOLARLY PUBLISHING COMMUNITY
AND HOW IT WORKS AND HOW IT WILL
LIKELY BE EFFECTIVE NEXT TO A
LOT OF UNCERTAINTIES AROUND IT,
BUT WE'LL BE POSITIONING
OURSELVES BOTH I THINK IN TERMS
OF THE POLICY DEVELOPMENT AS
WELL AS MAKING SURE OUR SYSTEMS
LIKE PUBMED CENTRAL AND OTHERS
ARE CAPABLE OF SUPPORTING THE
NEW DIRECTIONS.
>> ABSOLUTELY.
THANKS, JERRY.
ANY OTHER THINGS BEFORE WE MOVE
ON TO OUR NEXT WORKING GROUP?
OKAY, TERRIFIC.
THANK YOU, MIKE.
SO LET'S MOVE ON TO RESEARCH
FRONTIERS AS THE NEXT ONE.
>> SO JIM SAMINO HERE.
I WAS TAPPED TO REPORT OUT AND I
WANT TO APPLAUD MIKE FOR HAVING
THE TIME TO PUT TOGETHER A
SLIDE.
I HAD A DREAM THE OTHER NIGHT
WHERE I HAD TO GIVE A TALK AND I
DIDN'T I HAVE MY SLIDES.
IT WAS A NIGHTMARE.
I'VE GIVEN THE TALK IN MY SLEEP
MANY TIMES SO NOW I HAVE
LITERALLY GIVEN IN MY SLEEP, BUT
I DON'T HAVE SLIDES FOR THE
REPORT OUT.
WE GOT AS FAR AS ONE AUDACIOUS
GOAL THAT WAS THE RE-INVENTION
OF THE ELECTRONIC HEALTH RECORD.
OH, WAIT, I DO HAVE A SLIDE.
THERE WE GO.
SO AS YOU CAN IMAGINE, TALKING
ABOUT RE-INVENTION OF THE
ELECTRONIC HEALTH RECORD OPENED
UP A LOT OF DISCUSSION ABOUT A
LOT OF THINGS, SO LET ME JUST
TRY TO BOIL DOWN TO A COUPLE OF
POINTS.
WE TALKED ABOUT THAT ELECTRONIC
HEALTH RECORD WAS NOT ORIGINALLY
DESIGNED TO BE AN ADVANCE IN
PATIENT CARE, BUT SIMPLY TO
REPRODUCE THE PAPER RECORD THAT
WAS MAINLY DEVELOPED FOR BILLING
PURPOSES AND SECONDARILY FOR
PATIENT CARE AND WE'VE KIND OF
REINVENTED THAT IN AN ELECTRONIC
FORM SO WE HAVE GARBAGE IN,
GARBAGE OUT, WE HAVE POOR DATA
INTEGRATION, AND WE HAVE BIASED
INFORMATION THAT LEADS TO BIASED
ALGORITHMS, WHICH LEADS TO
BIASED PATIENT CARE WHICH THEN
LEADS TO MORE BIASED DATA.
THERE'S CALLS FOR CHANGING
THINGS IN ELECTRONIC MEDICAL
RECORDS LIKE THE REASON BEHIND
DECISION-MAKING AND SO ON.
ONC IS RESPONSIBLE FOR
STANDARDIZING WHAT GOES -- WHAT
IS IN THE ELECTRONIC HEALTH
RECORD, BUT THAT THE QUESTIONS
OF WHAT SHOULD BE ADDED TO THE
ELECTRONIC HEALTH RECORD AND HOW
THE ELECTRONIC HEALTH RECORD
SHOULD FUNCTION ARE STILL VERY
MUCH RESEARCH ISSUES OR SHOULD
BE RESEARCH ISSUES THAT FALL
UNDER THE PURVIEW OF NIH AND
THEN THE QUESTION IS, IS IT NLM
OR IS IT MORE THAN THAT, AND
REALLY, WE THOUGHT -- THE WHOLE
OF NIH SHOULD BE CONCERNED ABOUT
THIS, AND THAT OTHER INSTITUTES
WHO WANT TO PERFORM BETTER
RESEARCH AND WANT BETTER DATA
OUT OF ELECTRONIC HEALTH RECORDS
AND WANT TO SEE THEIR DECISIONS
THAT COME OR THE KNOWLEDGE THAT
THEY GENERATE BE REINVESTED INTO
PATIENT CARE SHOULD ALL CARE
ABOUT THE FUNCTIONALITY OF
ELECTRONIC HEALTH RECORDS.
AND SO YOU KNOW, AS AN AUDACIOUS
GOAL, THE QUESTION IS WHETHER
SOMETHING CAN BE TOO AUDACIOUS.
AND IN TERMS OF DEVELOPING
METHODOLOGY, AT LEAST WE DIDN'T
GET TO TALK TOO MUCH ABOUT THIS
SO I'LL JUST THROW MY OWN
OPINION IN, WHICH IS THAT
THERE'S A LOT OF METHODOLOGY WE
NEED TO UNDERSTAND WHEN
ELECTRONIC MEDICAL RECORDS ARE
WORKING, WHEN THEY'RE NOT
WORKING, WHAT THE OUTCOMES OF
USING THEM SHOULD BE, AND WE
NEED COGNITIVE SCIENTIST, DATA
SCIENTISTS, IMPLEMENTATION
SCIENTISTS AS WELL AS CLINICAL
INFORMATICIANS.
SO THERE'S A LOT OF METHODOLOGY
WORK THAT NEEDS TO GO INTO
STUDYING WHAT'S WRONG, DECIDING
HOW WE'RE GOING TO FIX
ELECTRONIC HEALTH RECORDS SO
THEY DELIVER BETTER INFORMATION
TO SUPPORT THE LEARNING HEALTH
SYSTEM, AND THEN HOW WE MODIFY
THEM OR ADAPT THEM SO THAT THEY
CAN DELIVER KNOWLEDGE BACK TO
THE POINT OF CARE AND KEEP UP
WITH THE EVER-EXPANDING RATE AT
WHICH KNOWLEDGE IS BEING
GENERATED.
AND WE TALKED ABOUT A LOT OF
DIFFERENT THINGS OVER THE COURSE
OF THE HOUR, BUT THOSE WERE, I
THINK, THE BASIC POINTS.
AND I WELCOME OTHERS TO CHIME IN
WITH THINGS I MISSED.
NO?
OKAY.
QUESTIONS?
I MEAN, FOR PEOPLE WHO AREN'T
HERE?
>> SORRY, KRISTI, DID YOU HAVE A
COMMENT?
GO AHEAD.
>> I'M VERY INTERESTED IN THE
CONVERSATION, IT SOUNDS LIKE IT
WAS A GREAT DISCUSSION.
WHEN YOU WERE DESCRIBING THE
CONVERSATION OF THE GROUP AND
THE DIFFERENT WORKFORCE ROLES
THAT ARE INVOLVED WITH COULD
EVEN CONSIDER SUCH A HUGE
ENDEAVOR.
I'M WONDERING IF THE TOPIC OF
LIBRARIANS CAME UP AND THE ROLE
THAT THEY'RE PLAYING IN THE
CLINICAL SYSTEMS WITH PROVIDING
INFORMATION SUPPORT, OR IF YOU
COULD EXPAND ON THAT FOR US.
>> SO WE DID NOT, BUT IT MAY BE
THAT, YOU KNOW, WE JUST
FUNDAMENTALLY EXPECT THAT THEY
WOULD BE INVOLVED.
I HAD A SYSTEM CALLED THE
LIBRARIAN INFO BUTTON TAILORING
ENVIRONMENT A LONG TIME AGO, BUT
IT WAS SOMEBODY WHO WAS GOING TO
DELIVER KNOWLEDGE TO THE POINT
IT WAS NEEDED, AS A LIBRARIAN,
WHETHER THEY CARRY THAT TITLE OR
NOT.
IT WAS A HASTY DISCUSSION BUT
MEDICAL LIBRARIANSHIP IS AN
IMPORTANT PART OF THAT.
>> I WONDER TO WHAT EXTENT
REALLY GETTING THE LARGER
COMMUNITY OF STAKEHOLDERS IN
TERMS OF THE HEALTHCARE
INSTITUTIONS TOGETHER TO THINK
STRATEGICALLY ABOUT THIS AND BE
ABLE TO WORK IN PARTNERSHIP WITH
THE MAJOR EHR VENDORS, BECAUSE I
FEEL LIKE WHAT OFTEN HAPPENS IS
THERE'S ISOLATED INSTITUTIONS
DOING INNOVATIVE PROJECTS, AND
THEY DO OFTEN WORK WITH THE
VENDOR, BUT THEN EACH
INSTITUTION ENDS UP COMING UP
WITH DIFFERENT SOLUTIONS TO THE
PROBLEMS.
AND SO WOULD NLM PLAY A ROLE IN
A CONVENER OF THE HEALTHCARE
INSTITUTIONS THAT ARE TRYING TO
WEIGH IN ON THEIR OWN EHR
IMPLEMENTATIONS TO TRY TO CREATE
CONSISTENCY AND REDUCE RESOURCES
INVOLVED IN THAT?
LOOKS LIKE PATTI HAS HER HAND UP
AND THEN VALERIE.
>> YES, THANKS VERY MUCH.
ACTUALLY I'M RAISING MY HAND SO
I CAN ASK MITCH TO SAY
SOMETHING, BECAUSE THE NLM
PEOPLE WHO WERE INVOLVED IN THE
DEVELOPMENT OF THE STRATEGIC
PLAN, REMEMBER THE MANY REQUESTS
FOR WHAT WE COULD DO FOR
CLINICAL INFORMATION DURING THE
PLANNING PROCESS.
MITCH, I WONDER IF YOU CAN RAISE
THE ISSUE YOU RAISED -- IS MITCH
BACK, BY THE WAY?
CAN RAISE THE ISSUE HE RAISED IN
OUR DISCUSSION.
I DON'T SEE HIM RIGHT HERE RIGHT
NOW.
SO I'LL START AND THEN MAYBE
HEIDI OR JOE OR SOMEONE WHO WAS
THERE CAN TALK ABOUT THIS.
MITCH WAS ASKING -- WAS GIING GA
PLEA FOR GETTING CLINICAL
INFORMATION MORE READILY
AVAILABLE, SO SCIENCE-BASED
TRUSTABLE CLINICAL INFORMATION,
WHAT COULD -- AND RECOGNIZE THAT
NLM IS NOT THE PLACE TO DEVELOP
CLINICAL GUIDANCE.
WE'RE GOING TO HAVE A GREAT TALK
THIS AFTERNOON, BY THE WAY, FROM
N IGA M SHAH ABOUT SOME OF THE
THINGS WE'VE BEEN INVESTING IN,
BUT OTHER WAYS TO INVEST IN THE
MODULAR COMPONENTS OF ELECTRONIC
HEALTH RECORDS THAT WILL ALLOW
FOR RAPID EXTRACTION OF THE
LITERATURE AND PRESENTATION IN A
WAY THAT MAKES IT ACCEPTABLE TO
CLINICIANS AND SHOULD BE
THINKING ABOUT THIS INNOVATION
MORE FROM AN AN ARCHITECTURAL
PERSPECTIVE THAN FROM A FULL
STACK DESIGN PERSPECTIVE.
JOE OR HEIDI, IF YOU WANT TO
WEIGH IN TO WHAT I MIGHT HAVE
MISSPOKEN.
BEFORE WE GO, I WANT TO MAKE
SURE WE THINK ABOUT HOW DO WE
GET GENOMIC INFORMATION INTO THE
ELECTRONIC HEALTH RECORD IN A
USABLE FASHION.
THANKS.
>> YEAH, I MEAN, I WILL SAY THAT
IN OUR OWN EHR SYSTEM, WE'VE
BEEN TRYING TO ROLL OUT
EDUCATIONAL MODULES, LIKE PCOI,
THESE POINT OF CARE SORT OF
EDUCATION PIECES WITHIN OUR EPIC
IMPLEMENTATION.
AFTER A YEAR OF PUTTING THESE
MODULES OUT THERE THAT ARE
PRETTY READILY ACCESSIBLE, WE
FOUND VERY LITTLE UPTAKE.
AND I THINK MITCH'S POINT THAT
HE WAS MAKING WAS MORE AROUND
REALLY THE CLINICAL DECISION
SUPPORT SIDE, WHERE IT'S NOT A
BUSY CLINICIAN WHO HAS NO TIME,
YOU KNOW, HAVING TO THINK TO GO
SEARCH OUT INFORMATION, READ
ABOUT IT AND IMPLEMENT IT, BUT
HOW CAN THE SYSTEM HELP GUIDE
THE CLINICIAN SO THEY DON'T HAVE
TO THINK TO GO LOOK FOR
INFORMATION.
SO I THINK SOME OF THAT IS
REARRANGING THE EHR OR NOT
REARRANGING BUT CREATING MORE
USEFUL FIELDS AND FUNCTIONS AND
KNOWLEDGE THAT'S MORE
EFFECTIVELY COLLECTED JUST AS A
PART OF CARE AS WELL AS GUIDING
THE CLINICIAN BASED ON MORE
ACCURATE INFORMATION OF WHAT TO
DO WITH THEIR PATIENT IN A CDS
SORT OF WAY.
I THINK THAT'S WHAT HE WAS, I
THINK, YOU KNOW, TRYING TO SORT
OF FOCUS ON, AND THAT REQUIRES A
FAIR BIT OF REJIGGERING OF THE
EHR, SHALL WE SAY.
BUT VALERIE, YOU'VE HAD YOUR
HAND UP, SO YOU CAN COMMENT.
>> I JUST WANTED TO SAY PATTI
HAD ALREADY ALLUDED TO SOMETHING
WE HAD STARTED TALKING ABOUT BUT
DIDN'T HAVE A FULLY FORMED
STATEMENT THE WAY JIM DID ABOUT
OMICS DATA, RIGHT, ABOUT THE
VARIOUS WAYS THAT WE COULD THINK
ABOUT AFN OWE TATING --E
GENOME BECAUSE WE HAVE DATASETS
THAT WOULD BE HELPFUL.
WE JUST DIDN'T GET FAR ENOUGH IN
THAT DISCUSSION YET.
SO ANDY CAN SAY WHAT HE REALLY
SAID.
I'M JUST TELLING YOU THAT WE DID
HAVE A BROADER CONVERSATION THAN
ONLY CLINICAL.
>> SO THIS WAS ANOTHER IDEA THAT
SORT OF, I GUESS, I WOULD SAY
PARALLELS NOT DOWNSTREAM OF THE
EHR PROBLEM.
ONCE WE SOLVE THE EHR PROBLEM,
THERE ARE PLENTY OF OTHER REALLY
COMPELLING, EXCITING SCIENTIFIC,
YOU KNOW, RESEARCH TOPICS IN THE
REALM OF NLM THAT RELATE TO
ANNOTATING THE GENOME,
FUNCTIONAL EFFECTS OF VARIANCE
IN THE GENOME THAT INTEGRATE
ACROSS MULTIPLE PLATFORMS OF
INQUIRY OF THE GENOME, THERE'S
MULTI-OMICS METHODS, METHODS
THAT USE SPATIAL TRANSCRIPTOMICS
AND SO FORTH.
IF WE COULD SOLVE JIM'S PROBLEM,
THAT IS THE SINGLE BIGGEST KIND
OF PROBLEM THAT WOULD REALLY,
REALLY ACCELERATE THE DELIVERY
OF HEALTHCARE, EVEN USING GENOME
DATA.
SO HOW TO INTEGRATE THE GENOME
INTO THE EHR IS ANOTHER KEY
PROBLEM THAT WE JUST TOUCHED ON.
>> AND I WILL SAY AT THE GLOBAL
ALLIANCE MEETING, WHICH FOR
THOSE OF YOU WHO DON'T KNOW IS
THE GLOBAL ALLIANCE FOR GENOMICS
AND HEALTH, STANDARDS, BUILDING
BODY, AND OUR NEXT PLENARY
MEETING IS NEXT WEEK IN
BARCELONA, AND WE WILL HAVE A
SECTION FOCUSED ON SOME OF THESE
STANDARDS, I KNOW EPIC WILL BE
THERE, PERHAPS OTHER EHR VENDOR,
AND THERE'S AN INCREASING AMOUNT
OF WORK ACROSS THE GROUPS TO
REALLY THINK ABOUT STANDARDS FOR
INTEGRATING GENOMIC DATA INTO
THE EHR WHICH I THINK TO START
WITH IS JUST LIKE REPORTED
VARIANCE ON REPORTS DURING
THEIR -- NOT AS SCANNED PDFs
IN THE MEDIA TAB, IN FACT,
CONSUMABLE GENOMIC DATA OR
VARIANTS THAT HAVE BEEN REPORTED
AND INTERPRETED BEFORE WE EVEN
GET TO ANNOTATING GENOMIC DATA.
BUT I THINK THAT CLOSE WORKING
RELATIONSHIP BETWEEN OUR
COMMUNITY AND THE VENDORS IS
GOING TO HAVE TO BE CRITICAL TO
DRIVING THAT.
>> IF I COULD JUST ADD ONE OTHER
THING, WHICH IS ANTICIPATION
THAT ARTIFICIAL INTELLIGENCE IS
GOING TO BE LIKE A REALLY KEY
PART OF ALL OF THIS, AND SO
HAVING A.I. PEOPLE IN THE ROOM
AS WELL, HOW DOES THE STRUCTURE
OF THESE DATABASES MOST EASILY
GET TRIPPED UP BY A.I., HOW CAN
WE BEST EMPOWER OUR SORT OF
FUTURE IMAGINATION OF THE
SOFTWARE THAT WILL MAKE
INFERENCE FROM THE DATA?
THAT'S GOING TO BE A KEY PART OF
THIS DESIGN TOO.
>> ABSOLUTELY.
>> SO I DIDN'T SEE RICHARD HERE,
BUT OUR DEPUTY DIRECTOR IN THE
EXTRAMURAL PROGRAMS IS HERE.
THIS IS SOMETHING WE PROBABLY
SHOULD THINK ABOUT BRINGING UP
AGAIN WITH RICHARD TO THINK
ABOUT WHAT CAN WE DO FROM THE
EXTRAMURAL PROGRAMS'
PERSPECTIVE.
CLEARLY WE NEED SCOPING
DISCUSSIONS, WE NEED TO THINK
ABOUT WHERE DOES THE LIBRARY FIT
IN UNIQUELY, WHAT KIND OF
PARTNERSHIPS MIGHT WE WANT TO
THINK ABOUT WITH INDUSTRY.
SO I COULD SEE SOME INTERESTING
OPPORTUNITIES HERE.
AND WE MAY TAP SOME OF YOU TO
FLESH THAT OUT A LITTLE BIT
MORE.
I CAN'T PROMISE YOU A FUNDING
ANNOUNCEMENT THIS YEAR, THOUGH,
JIM, I'M SORRY ABOUT THAT ONE.
>> PHILIP AND THEN NANCY.
>> I KNOW WITH MOBILIZING
BIOMEDICAL KNOWLEDGE COMMUNITY,
THERE'S A LOT OF DISCUSSION
ABOUT ARC CDS -- ALSO -- AT
LEAST FROM THE PERSPECTIVE OF
DECISION SUPPORT AND HOW TO DEAL
WITH THE SYSTEM IN TERMS OF
MAKING THEM MORE USER-FRIENDLY
AND MORE RELEVANT, AND AT THE
SAME TIME ALSO CORRELATE WITH
THE LEARNING HEALTHCARE, BUT AT
THE SAME TIME, I CAN SEE NLM AND
ARC PARTNERING WITH THAT AS WELL
AS MY PROFESSION, AND ALSO WHAT
I LIKE, THE LITTLE BIT I'VE
HEARD ABOUT IT, IS THAT IT ALSO
SEEMS TO BE AP AN EQUALIZER.
WE'VE GOT A LOT OF CAN DIVIDE
AMONGST THESE HEALTHCARE SYSTEMS
TO ACADEMIC MEDICAL CENTERS.
IT WOULD BE, I THINK, REALLY
GREAT AS PATTI MENTIONED WITH
THE EXTRAMURAL PROGRAMS AS WELL
TO BE ABLE TO FIGURE OUT HOW IT
WOULD BEEF UP ARC, THAT
EQUALIZER, DECISION-SUPPORTED
PROCESS MAKE IN THE HEALTHCARE
ORGANIZATIONS
>> THANKS, PHILIP AND NANCY.
>> I JUST WANTED TO ECHO, HEIDI,
YOUR POINT ABOUT ENGAGING WITH
EHR VENDORS.
I THINK OFTEN ASSUMPTIONS ARE
MADE ABOUT WHAT A GIVEN EHR CAN
OR CAN'T DO THAT MAY OR MAY NOT
BE REFLECTIVE OF THEIR CURRENT
CAPABILITIES AND MORE SO OF THE
DEVELOPMENT THAT THEY HAVE IN
PROCESS ALREADY.
AND SO PARTICULARLY IN THESE
EMERGING AREAS THAT ARE MOVING
RAPIDLY TO MAKE ASSUMPTIONS,
ONE, THAT ALL EHRs ARE THE
SAME, OR TWO, THAT ANY GIVEN
IMPLEMENTATION OF AN
ORGANIZATION'S EHR IS THE SAME
AS OTHERS OR THAT A GIVEN
IMPLEMENTATION REFLECTS CURRENT
AND FUTURE CAPABILITIES OF THE
SYSTEM MEANS WE COULD MISS
OPPORTUNITIES TO MOVE FASTER
TOGETHER.
SO THAT'S SORT OF MY POINT.
>> NANCY, I COMPLETELY AGREE
WITH YOU, AS I'VE LEARNED MORE
AND MORE ABOUT DIFFERENT EPIC
IMPLEMENTATIONS AND THAT THEY
ARE SO DIFFERENT, BUT DO YOU
THINK THAT THERE'S A WAY THAT WE
CAN ACTUALLY CREATE THEM MORE
THE SAME AND CONVENE THE
DIFFERENT PARTIES THAT HAVE EHR
SYSTEMS TO DESIGN THOSE
IMPLEMENTATIONS SO THAT THEY'RE
THE SAME, RIGHT?
>> SO THERE ARE, AND AGAIN I
THINK THERE'S GOING TO BE SOME
VARIATION ACROSS DIFFERENT
VENDORS.
I CAN ONLY SPEAK FOR THE GROUP
THAT I WORK WITH, WHICH IS WE
VERY MUCH WORK ON TAKING THE
BEST OR THE MOST EFFECTIVE OF
WHAT COMMUNITIES ARE DOING AND
WHAT WE'RE RELEASING AND TRY TO
STANDARDIZE PEOPLE THAT -- OVER
TIME AND THAT'S CONSTANTLY
EVOLVING TO A STANDARD, AND WE
HAVE WAYS OF DOING THAT, WE HAVE
VERY STRONG COMMUNITY ENGAGEMENT
AS WELL.
BUT THEN YOUR SECOND QUESTION
ABOUT EVEN RAISING THAT UP A
LEVEL AND LOOKING AT A MORE EHR
INDUSTRY-WIDE APPROACH TO WHAT
ARE SOME OF THE KEY SUCCESS
FACTORS, AND I THINK THAT'S
IMPORTANT, BUT WE ALSO DON'T
WANT TO SORT OF LOWER THINGS TO
THE LOWEST COMMON DENOMINATOR,
BUT LET INNOVATION AND LET NEW
DEVELOPMENT LEAD WHERE IT CAN.
>> ABC
>> ABSOLUTELY.
>> IF I COULD JUST GIVE AN
EXAMPLE OF SOMETHING THAT IS NOT
ABOUT STANDARDIZATION OR, YOU
KNOW, IT'S A FUNDAMENTALLY
DIFFERENT PROPERTY THAT ONE
MIGHT INTRODUCE TO AN EHR AND
THAT'S -- CLEM BROUGHT THIS UP,
THAT'S THE FORMAL REPRESENTATION
OF WHY THINGS ARE DONE.
WHAT'S THE REASON.
SO A MEDICATION WAS STARTED,
USUALLY YOU CAN FIGURE OUT, OH,
PATIENT HAD THIS PROBLEM AND
THEY STARTED THIS MEDICATION.
BECAUSE MAYBE SOMETIMES THE
ORDER ENTRY SYSTEM REQUIRES IT.
AND OTHER TIMES YOU CAN JUST
FIGURE IT OUT BECAUSE IT MAKES
SENSE.
BUT THEN THEY STOP IT.
WHY DID THEY STOP IT?
DID IT WORK, DID IT NOT WORK?
IF YOU'RE TRYING TO DO OUTCOMES
ANALYSIS, THE DIFFERENCE BETWEEN
THOSE TWO ANSWERS MAKE A
DIFFERENCE, YET WE DON'T
DOCUMENT THAT IN A FORMAL
STRUCTURED WAY OR REQUIRE PEOPLE
TO DOCUMENT WHY THEY MAKE
CHANGES THEY DO.
SOMETIMES IT GOT STOPPED BECAUSE
SOMEBODY DROPPED THE BALL AND
THERE WAS POOR CONTINUITY IN THE
PATIENT'S CARE.
SO WE DON'T HAVE -- THERE'S A
LOT OF THESE KINDS OF THINGS
THAT WE NEED TO FIGURE OUT WHAT
SHOULD BE IN THE EHR IF WE
REALLY WANT TO DO A LEARNING
HEALTH SYSTEM, OR WE REALLY WANT
TO DO BETTER DECISION SUPPORT OR
WE REALLY WANT TO MAKE THE EHR A
PARTNER IN THE PATIENT CARE
PROCESS, AS OPPOSED TO SIMPLY
RECORDING WHAT PEOPLE THINK
SHOULD BE IN THERE AND THEN
SENDING TO WHOEVER THINKS IT
WOULD BE REUSABLE.
SO THAT'S RESEARCH TO FIGURE
THAT OUT.
I DON'T EXPECT THE VENDORS TO DO
THAT BECAUSE THEIR CUSTOMERS
AREN'T ASKING FOR THAT.
WE'VE GOT THE RESEARCHERS HAVE
TO DEMONSTRATE THAT IT'S WORTH
DOING THOSE THINGS, AND THAT'S
WHERE THE HIGH RISK, HIGH RETURN
PART COMES IN.
HOW DO WE DO THAT SO IT DOESN'T
TORTURE THE PHYSICIANS AND
NURSES?
AND MAKE BURDEN OF DOCUMENTATION
WORSE?
WE WANT TO MAKE IT EASIER.
SO IF YOU TELL ME WHY I'M DOING
SOMETHING, IF I TELL A SYSTEM
I'M DOING SOMETHING, THE SYSTEM
CAN COME BACK AND HELP ME DO IT
BETTER BECAUSE IT KNOWS WHAT I'M
THINKING ABOUT.
BUT THAT'S A RESEARCH ISSUE.
IT'S NOT -- I DON'T THINK FOR --
WE TALKED ABOUT SMALL BUSINESSES
MAYBE, BUT EVEN THERE,
SOMEBODY'S GOT TO DEMONSTRATE A
RETURN ON INVESTMENT BEFORE WE
CAN EXPECT A LOT OF INVESTMENT
TO DO IT RIGHT.
SO THAT'S THE RESEARCH PART.
>> I'M GOING TO ALLOW ONE MORE
COMMENT, CLEM'S GOT HIS HAND UP
AND WE NEED TO MOVE ON TO THE
NEXT BREAKOUT GROUP.
CLEM.
>> OH, I JUST WANT -- WELL,
THAT'S ME?
>> YES.
>> I JUST WANTED TO SUPPORT
JIM'S POSITION.
JUST ASKING WHY IT STOPPED IT --
BURDENSOME -- OPTIONS AND THAT
WOULD BE SO DARN USEFUL, BECAUSE
YOU CAN FIGURE OUT WHY THEY
STARTED, YOU'VE GOT THEM ON BETA
BLOCKERS, YOU GOT HEART FAIL ,
IT'S REALLY HARD TO FIGURE OUT
WHY THEY STOPPED IT FROM OTHER
INFORMATION IN THE MEDICAL
RECORD.
>> EVEN ENGAGING THE PATIENT IN
THAT DOCUMENTATION MIGHT BE A
GOOD THING AS WELL, BECAUSE
SOMETIMES IT'S THEIR REASONING.
BUT WITH THAT, I'M GOING TO --
THIS IS A REALLY GREAT
DISCUSSION.
I'M GOING TO MOVE US ON TO THE
NEXT PUBLIC SERVICES WORK GROUP
SO WE CAN HEAR FROM THEM.
>> THANK YOU.
CAN SOMEONE PUT UP THE SLIDES?
I DON'T KNOW IF THE STAFF WAS
GOING TO DO THAT?
THANK YOU.
SO I'M LOURDES
BAEZCONDE-GARBANATI, CHAIR OF
THE WORK GROUP.
THESE ARE THE MEMBERS OF OUR
WORK GROUP, AND I JUST WANTED TO
REMIND EVERYBODY THAT THESE
FOLKS ARE ALL ON BOARD AND HAVE
COMMITTED THEIR TALENT TO
ANOTHER YEAR AND SO WE'RE VERY
EXCITED ABOUT KEEPING THEM IN
THIS WORK GROUP.
THEIR CONTRIBUTIONS HAVE JUST
BEEN TERRIFIC.
SO WE'VE BEEN HAVING A SERIES OF
MEETINGS.
OUR LAST MEETING WAS ON
SEPTEMBER 2ND, AND WE'VE REALLY
CONTINUED TO MEET THREE TIMES
PER YEAR ON ZOOM MOSTLY, AND
WE'VE BEEN CONTINUING ALL OF OUR
MEETINGS IN DISCUSSIONS OF A
VARIETY OF TOPICS INCLUDING SOME
VERY INTERESTING TOPICS LIKE
PLAIN LANGUAGE, THE JUST USE OF
INFORMATION JUST IN TIME, LAYOUT
AND JUST A VARIETY OF THINGS
THAT HAVE TAKEN PLACE, AND WE'VE
HAD GREAT FEEDBACK FROM THE
STAFF AND VARIOUS PRODUCT
DEVELOPERS ON THIS.
SO WE'RE WRAPPING UP NOW OUR
THIRD YEAR IN THE CLINICAL
TRIALS TEAM, AND IT'S DELIVERED
NOW THE BETA WEBSITE THIS YEAR,
AS WELL AS A PROTOCOL
REGISTRATION AND RESULT SYSTEMS
RECORDS, AND WE'VE BEEN
RECEIVING GOOD COMMENTS ABOUT IT
AND HAVE REALLY MADE A LOT OF
PROGRESS AND HAVE ACHIEVED
SEVERAL ACCOMPLISHMENTS.
SINCE THIS WORKING GROUP LAST
MET, THERE WERE TWO RELEASES
ABOUT DATA ON THE
CLINICALTRIALS.GOV AND ALSO ON
OUR PRS.
AND ONE OF THE THINGS THAT HAS
BEEN REALLY IMPORTANT IS THAT
NOW WE'RE TRYING TO SUMMARIZE
OUR PROGRESS AND REALLY
GENERATING A NEW REPORT THAT'S
GOING TO BE COMING OUT THIS
FALL, WHICH WILL HIGHLIGHT ALL
OF THIS YEAR'S ACCOMPLISHMENTS,
AND THAT WILL BE SENT OUT TO YOU
FOLKS WITH LOTS OF DETAILS ON
THIS FOR YOUR FEEDBACK.
SO THE WORKING GROUP HAS
PROVIDED A LOT OF FEEDBACK, AND
HERE YOU CAN SEE SOME OF THE
DIFFERENT KINDS OF FEATURES THAT
WE'RE SHARING AND APPRECIATING
SOME OF THE NEW FEATURES
INCLUDING CHOOSING DIFFERENT
OPTIONS FOR WHEN PEOPLE COME ON
THE RECORD LIST.
AND FOR EXAMPLE, HERE IS SOME
FEEDBACK THAT WE'VE RECEIVED
RELATED TO WHICH KINDS OF
FEEDBACK PEOPLE WOULD LIKE, OR
HOW TO USE -- THE ONE WITH
MINIMAL CONTENT HAS BEEN THE
MOST POPULAR SO WE THINK THIS IS
GOING TO BE REALLY THE ONE THAT
WILL BE USED IN THE NEW WEBSITE.
SO WE'VE REALLY BEEN ENHANCING
SEVERAL ITEMS IN PARTICULAR,
ENHANCING THE ABILITY TO SEARCH,
WHICH NOW REPLACES BASIC AND
ADVANCED SEARCHES, AND REALLY
BEING ABLE TO USE TABULAR VIEWS
OF THE SEARCH RESULTS.
THERE'S BEEN A LOT OF AUTOMATION
SUPPORT APPLYING NEW AND
ADVANCED COMPUTATIONAL
TECHNIQUES, AND WE PLAN TO
SUBMIT THESE TOOLS FOR THE USERS
SO THAT THEY CAN ALSO PROVIDE
THEIR FEEDBACK, WHICH HAS BEEN
VERY VALUABLE THROUGHOUT.
SO HERE OUR PRIORITY HAS REALLY
BEEN TO IMPROVE THE USER'S
EXPERIENCE WITHOUT ANY
DISRUPTION IN THE WORKFLOW.
SO WE'VE HAD BOTH THE BETA AND
THE REGULAR SITE EXISTING AT THE
SAME TIME, BUT EVENTUALLY THE
BETA WILL BE THE PRIMARY ADOPTED
ONE WITH ALL OF THE EVOLVING
CHANGES AS WE GAIN REAL WORLD
KNOWLEDGE ABOUT THIS, AND
SOMETIME NEXT YEAR, WE REALLY
INTEND TO HAVE THE BETA BE THE
PRIMARY, SO WE'VE BEEN TRYING TO
DRIVE MORE AND MORE TRAFFIC TO
IT SO THAT PEOPLE CAN GET USED
TO THE CHANGES, AND THE FEEDBACK
WE'VE RECEIVED HAS BEEN VERY
ENCOURAGING, AND PEOPLE REALLY
ARE PROVIDING FEEDBACK, AND THE
WHOLE TEAM HAS BEEN LEARNING AS
WE BUILD THIS PROCESS, SO
THERE'S BEEN A LOT OF LEARNING
THROUGHOUT THE TIME WITH THE
FEEDBACK FROM THE USERS.
SO HERE WHAT WE SEE IS THIS IS
THE BETA THAT'S GOING TO BE KIND
OF PRIMARY, SOME OF THE THINGS
THAT ARE ALREADY AVAILABLE,
OTHER THINGS ARE STILL IN
PROGRESS AND OTHER THINGS WILL
BE SEEN IN THE FUTURE, AND WE'RE
REALLY GETTING A LOT OF FEEDBACK
FROM OUR WORK GROUP MEMBERS AND
THEIR PERSPECTIVES ON WHAT ARE
SOME OF THE MOST CRUCIAL
FEATURES THAT WE NEED TO HAVE
HERE.
WE'VE ADDED NEW SEARCH CRITERIA
TO HELP THE USERS COMPLETE THEIR
TASK.
WE'RE GETTING GREAT SUGGESTIONS
FROM THEM SINCE THE INITIAL
RELEASE OF THE BETA, AND WE'VE
INTRODUCED BOTH EXPANDABLE AND
CLASSIBLE POP-UP SUPPORT WITH
ACTION BARS THAT PEOPLE CAN
CLICK ON.
WE HAVE A NEW BANNER TO DRIVE
TRAFFIC TO THE BETA, AND WE'RE
SEEING ALREADY SOME EXCITING
ALMOST LIKE THREE TIMES AS MANY
PEOPLE STARTING TO USE BETA THAN
WE'VE HAD IN THE PAST, AND SO
WE'RE SEEING THAT TRANSITION
HAPPENING, WHICH IS VERY
EXCITING.
SO PRETTY MUCH WE'VE CONTINUED
THE ENGAGEMENT OF THE PUBLIC.
THIS HAS BEEN REALLY A KEY THING
FOR US, IS TO REALLY ENGAGE THE
PUBLIC AND THE USERS IN THIS
ENTIRE EFFORT AS WE IMPROVE THE
VARIOUS THINGS WE HAVE BEEN
PRESENTING, AND ALREADY HAVE
BEEN RECOGNIZED ABOUT DOING MUCH
BETTER AND MORE IMPROVED WORK IN
THIS AREA, BUT WE'RE STILL
BUILDING OUR PRODUCT, SO IT'S
IMPORTANT TO NOTE THAT, AND
WE'LL BE SHARING THE DESIGN IN
THE FUTURE PROBABLY EARLY NEXT
YEAR OR MID YEAR.
AND AGAIN, THE NEW BETA WILL BE
THE PRIMARY ONE, AND WE REALLY
WELCOME ANY FEEDBACK FROM THE
BOARD OF REGENTS AS WE MOVE ON
IN THIS PROCESS, AND WE CONTINUE
INTO 2023.
AND AGAIN, THANKS TO OUR WORKING
GROUP THAT HAS WORKED SO HARD
AND TO THE ENTIRE STAFF AND SOME
OF THE PRODUCT DONORS THAT HAVE
BEEN ABSOLUTELY AMAZING IN WHAT
THEY HAVE PRODUCED.
IT'S JUST REALLY EXTRAORDINARY.
SO THANK YOU, AND I'M OPEN FOR
ANY QUESTIONS.
>> THANKS, LOURDES.
REALLY EXCITING PROGRESS BEING
MADE THERE.
ANY QUESTIONS FOR LOURDES OR THE
WORK GROUP?
>> THIS IS CLEM.
I HAVE A COUPLE QUESTIONS.
FIRST, I THOUGHT THE BIG PROBLEM
WAS NOT THE OUTPUT OR THE
DISPLAY BUT THE INPUT.
SO THERE'S TWO QUESTIONS.
SO WAS THERE ANY BIG CHANGES ON
THE INPUT OR BIG CHANGES IN
HAPPINESS ABOUT THE INPUT?
>> ABSOLUTELY, WE'RE WORKING ON
BOTH IN PARALLEL, NOT ONLY THE
PUBLIC SITE, MAKING SURE IT'S
MORE USER-FRIENDLY, BUT ALSO THE
INPUT, OF COURSE.
SO WE'VE ALREADY HAD THE RECORDS
MANAGEMENT DISPLAY, WHICH WAS
ONE OF THE SLIDES THAT LOURDES
HAD HIGHLIGHTED, AND WE'RE NOW
ACTIVELY BUILDING THAT INPUT
REGISTRATION PIECE, WHICH WILL
HOPEFULLY BE AVAILABLE SOMETIME
NEXT YEAR AS WELL, AND THEN
SUBSEQUENTLY THE RESULT
SUBMISSIONS.
DESIEBS ARE CURRENTLY IN THE
WORKS, THAT'S THE FEEDBACK THE
BOARD OF REGENTS HAD PROVIDED.
SO EXAMPLE OF HOW WE'RE PUTTING
REALTIME SUPPORT FOR THOSE
PUTTING INFORMATION INTO PRS.
>> A SECOND QUESTION, YOU HAVE A
FHIR VERSION OF IT.
IS THAT RELATED TO THE EBM
WORKING GROUP IN FHIR,
EVIDENCE-BASED MEDICINE, OR IS
THAT A DIFFERENT ONE?
>> MY COLLEAGUE CHRISTINE IS
ALSO HERE BUT WE ARE WORKING
WITH LISTER HILL WITH YOUR
GROUP, SO RIGHT NOW IT'S A PILOT
AND IT'S JUST GIVING A ONE TO
ONE CONVERSION JUST TO SEE THE
UTILITY AND IF THE CONVERSION
ACTUALLY IS REALLY WORKING WELL,
AND THEN THE GOAL IN THE FUTURE
IS TO HAVE HOPEFULLY A BROADER
VERSION WHERE YOU COULD DOWNLOAD
A WHOLE DATASET IN THE FHIR API.
SO THANKS TO YOUR TEAM IN
SUPPORTING US IN THAT.
>> THANK YOU.
>> ANY OTHER QUESTIONS?
GREAT.
WE HAVE OUR LAST WORK GROUP,
WHICH IS THE COLLECTIONS WORK
GROUP.
>> OKAY.
THANK YOU.
I'M DIANE BABSKI, ASSOCIATE
DIRECTOR FOR LIBRARY OPERATIONS,
AND I VOLUNTEERED TO DO THE
REPORT OUT FOR OUR GROUP.
SO LET ME GO AHEAD AND START
WITH LAST YEAR, MY DIVISION,
DIVISION OF LIBRARY OPERATIONS.
WE DEVELOPED A 15-YEARLONG RANGE
PLAN BASED ON EXTENSIVE FEEDBACK
FROM STAFF, A VARIETY OF
STAKEHOLDERS.
WE USE PRODUCT DATA AND USER
FEEDBACK TO THINK ABOUT WHAT WE
DO.
WE REFLECTED ON WHAT WORKED AND
WHAT DIDN'T WORK DURING THE
PANDEMIC AND HOW WE CAN BETTER
MEET OUR LEGISLATIVE MANDATE AS
A NATIONAL LIBRARY TO COLLECT,
PRESERVE AND DISSEMINATE
BIOMEDICAL LITERATURE AND
INFORMATION.
SO TODAY'S REALITY IS THAT NEW
AND DIFFERENT CHALLENGES EXIST
FOR LIBRARIES DUE TO RAPIDLY
CHANGING DIGITAL AND VIRTUAL
EXPECTATIONS OF OUR USERS, NEW
FORMATS FOR ACCESSING AND
STORING INFORMATION, AND THE
RAPID EVOLUTION OF SCIENCE.
WE'RE RECKONING WITH THE
COMPLEXITY, SCOPE AND
INTERCONNECT IFNESS OF
CHALLENGES THAT INVOLVE GROWING
INEQUALITY, HEALTH DISPARITIES,
HEALTH MIS AND DISINFORMATION
AND RAPID SHIFTS IN TECHNOLOGY.
A CLICK FROM WHEREVER THEY ARE
AND HOWEVER THEY WANT IT,
WHATEVER FORMAT.
THAT'S THE FUTURE WE'RE NEEDING
TO BUILD TOWARD AND WHAT WE'RE
THINKING ABOUT IN LIBRARY
OPERATIONS.
SO OUR 15-YEAR PLANS -- PLAN
INTENDS TO IDENTIFY WHERE TO
FOCUS OUR EFFORTS.
WE ARE GOING TO MAKE SOME
CHANGES TO PROVIDE SOME CAPACITY
AND SPACE FOR US TO REFOCUS SOME
EFFORTS AND ADDRESS THOSE
CHALLENGES I JUST MENTIONED IN
THE LAST SLIDE.
OUR PLANNED PLAN SUPPORTS NN
AND OUR FEDERAL MANDATE IS TO
COLLECT, PRESERVE AND
DISSEMINATE THE BIOMEDICAL
INFORMATION, AND THAT WILL TAKE
US INTO OUR 200TH ANNIVERSARY.
SO BEFORE I GET INTO OUR PLAN, I
THOUGHT IT WOULD BE PRUDENT TO
GIVE YOU A LITTLE BACKGROUND
ABOUT LIBRARY OPERATIONS AND
SOME OF THE WORK THAT WE DO.
TWO YEARS AGO WE STARTED DOING
THESE PRESENTATIONS IN OUR NLM
TOWN HALLS CALLED GETTING TO
KNOW YOU, AND THEY WERE A SERIES
OF PRESENTATIONS TO OUR STAFF,
AND LIKE MANY OF YOU, WE HAD
STAFF THAT WERE ONBOARDING
DURING THE PANDEMIC, AND THESE
PRESENTATIONS WERE A WAY TO HELP
STAFF UNDERSTAND THE
ORGANIZATION BEYOND THEIR
DIVISION.
SO FOR US, WE CREATED A
FRAMEWORK TO HELP DESCRIBE OUR
WORK AND WE REFER TO THIS AS OUR
THREE Cs.
WE COLLECT, WE CURATE, AND WE
CONNECT.
BEFORE I MOVE INTO THE SPECIFICS
OF THE LONG-RANGE PLAN, I WANT
TO FIRST SHOW THAT LIBRARY
OPERATIONS IS ALREADY RESPONDING
AND ADAPTING TO TECHNICAL
CHANGES, AND USER NEEDS THROUGH
A FEW INITIATIVES ALREADY
UNDERWAY.
WE'VE RETHOUGHT HOW WE USE OUR
SPACE, ESPECIALLY GIVEN THE PAN
PANDEMIC AND OUR MULTIYEAR
RENOVATIONS WHERE WE HAD TO
UPROOT OVER 300 STAFF VERY
QUICKLY.
WE'RE HOTELING AND SHARING WORK
SPACES IN NEW WAYS AND REALLY
THINKING ABOUT HOW WE UTILIZE
SPACE ON CAMPUS.
AS PATTI MENTIONED IN HER
OPENING REMARKS, IN RESPONSE TO
USER NEEDS, WE'RE OPENING A
TEMPORARY READING ROOM, A
UNIFIED READING ROOM IN BUILDING
38.
THAT'S GOING TO BE ON
OCTOBER 3RD WITH THE SAFETY OF
OUR STAFF AND USERS A PRIORITY.
AUTOMATED INDEXING HAS ALSO
REDUCED THE TIME TO INDEX
CITATIONS IN MEDLINE FROM MANY
MONTHS TO JUST DAYS, AND MOST
ARE WITHIN 24 HOURS.
AND WE FINALLY GOT THROUGH THAT
600K AND GROWING BACKLOG OF
CITATIONS.
WE NOW PROVIDE 62% OF OUR
INTERLIBRARY LOAN REQUEST FROM A
DIGITAL FORMAT, WHICH IS AN
INCREASE OF ALMOST 20% FROM
PREPANDEMIC NUMBERS, AND AFTER
GETTING BACK INTO THE BUILDING,
WE'RE NOW AT A PRE-PANDEMIC RATE
OF INTERLIBRARY LOAN.
WE'VE ALSO SEEN A STEADY
INCREASE IN E ELECTRONIC FIRST
ACQUISITIONS OF OUR LITERATURE
BY ALMOST 140%, AND A REDUCTION
OF PRINT BY ALMOST 38%.
NOW I'M GOING TO PIVOT TO THE
LONG-RANGE PLAN.
SO WE TOOK A VERY THOUGHTFUL
APPROACH TO DEVELOPING THE PLAN,
ENGAGING ALL LEVELS OF OUR
STAFF.
WE WANTED EVERYONE TO BE A PART
OF IT.
THE LONG-RANGE PLAN IS INTENDED
TO BE VISIONARY.
THEREFORE, WE WANTED A VALUED
AND A DIVERSIFIED PERSPECTIVE TO
HELP US MOVE FORWARD.
TO ACCOMPLISH THIS, WE CONDUCTED
A VARIETY OF FEEDBACK SESSIONS
AND EMPLOYED FEEDBACK GATHERING
MECHANISMS TO CROWD SOURCE IDEAS
FOR WHAT OUR FUTURE WILL LOOK
LIKE.
AND AS YOU CAN SEE HERE, WE DID
SEVERAL DIFFERENT THINGS
INTERNALLY, LIKE VIRTUAL
WALK-ABOUTS AND FOCUS GROUPS,
AND WE HAD SOME DISCUSSIONS WITH
STAKEHOLDERS, WE LOOKED AT
RESPONSES TO RFIs, AND, OF
COURSE, WE REVIEWED OUR USER
DATA AND CUSTOMER SERVICE
FEEDBACK.
AS I JUST MENTIONED, THE
EXTERNAL USER FEEDBACK FROM OUR
CUSTOMER SERVICE PORTAL WAS KEY
AND WE REALLY WANTED TO SEE WHAT
WAS -- WHAT WERE SOME COMMON
THEMES GOING ON IN THERE.
AND AS YOU CAN SEE, HERE'S A
SAMPLING OF SOME ACTUAL
SUBMISSIONS FROM OUR USERS.
WE HOPE TO ADDRESS THESE GOING
FORWARD.
WHAT WE SAW THROUGHOUT THE
PROCESS WERE KEY THEMES THAT
EMERGED.
SO KEEPING THE NEEDS OF OUR
USERS IN MIND MAKE OUR
COLLECTION ACCESSIBLE TO ALL
USERS AND PROVIDE TRANSLATION
OPTIONS FOR NON-ENGLISH
SPEAKERS.
THESE WERE SOME THEMES AGAIN
THAT EMERGED OUT OF THAT
FEEDBACK.
WE NEED TO FACILITATE TRAINING
AND COLLABORATION ACROSS LL AND
NLM DIVISIONS AND ENHANCE
EMPLOYEES' CURRENT SKILLS TO
ADAPT TO THE FUTURE WORK NEEDS.
WE NEED TO PRIORITIZE
DIGITIZATION OF OUR RESOURCES,
AND CONTINUOUSLY COMMUNICATE
WITH STAFF REGARDING THE UTMOST
IMPORTANCE OF THIS DIGITIZATION
EFFORT.
AND WE NEED TO EMBRACE AN
INNOVATIVE, FLEXIBLE AND AGILE
MINDSET WHEN IDENTIFYING
SOLUTIONS AND IMPLEMENTING
CHANGE AND BEING READY TO PIVOT
BECAUSE WE KNOW THAT A LOT OF
THINGS POP UP UNEXPECTEDLY.
SO NOW LET ME TAKE YOU INTO A
VERY HIGH LEVEL OF OUR
LONG-RANGE PLAN GOALS.
SO WE'VE ESTABLISHED FIVE VERY
AMBITIOUS GOALS BUT WE BELIEVE
THEY ARE ATTAINABLE, AND THESE
AGAIN ARE GOING TO TAKE US INTO
OUR THIRD CENTURY AT THE
NATIONAL LIBRARY OF MEDICINE.
SO GOAL ONE IS TO CREATE A
MODERNIZED ORGANIZATIONAL
STRUCTURE.
THE FOCUS ON THIS IS REALLY
INTERNALLY ON THE ORGANIZATIONAL
STRUCTURE.
OUR WORK PROCESSES AND OUR
WORKFORCE NEEDS THAT ARE PAIR
PARAMOUNT TO MAKING THE
LONG-RANGE VISION ACHIEVABLE.
GOAL TWO IS TO UNIFY AND
TRANSFORM OUR NLM COLLECTIONS.
AND WE'LL REDEFINE AND MANAGE
THE DIVERSE COLLECTION AS A
SINGLE UNIFIED PRODUCT.
WE'LL ACCELERATE DIGITIZATION,
INCREASE DIGITAL ACQUISITIONS
AND IMPROVE DISCOVERABILITY OF
COLLECTIONS AND DATA AND
CONTINUE THE INVESTMENT IN OUR
PHYSICAL COLLECTION SPACE TO
ENSURE FUTURE PRESERVATION,
WHICH, AGAIN, IS PART OF OUR
LEGISLATIVE MANDATE.
GOAL THREE IS TO SUPPORT AND
PROMOTE THE USE OF HEALTH DATA
STANDARDS AND TERMINOLOGIES.
THIS POSITIONS LIBRARY
OPERATIONS AS A CENTRALIZED
LEADER IN THE PRODUCTION AND
ACCESS TO TERMINOLOGY STANDARDS
AND TOOLS AND SUPPORT OF HEALTH
DATA STANDARDS.
GOAL FOUR IS TO PROVIDE CUSTOMER
DESIGN EXPERIENCE AND SUPPORT.
THIS GOAL IS -- ITS FOCUS IS TO
EXPAND PRODUCT OWNERS'
UNDERSTANDING OF ITS CUSTOMERS
NEEDS AND TRANSLATE THAT INTO
PRODUCT DEVELOPMENT AND
MANAGEMENT BY PUTTING THE
PRINCIPLES OF A MODERN DIGITAL
STRATEGY INTO PRACTICE.
REALLY IT'S ABOUT MAKING
EVERYTHING MORE USEFUL FOR OUR
USERS WHEN THEY COME IN AND
HAVING A SEAMLESS TRANSITION
ACROSS PRODUCTS AND SERVICES.
AND LAST, GOAL 5 IS TO KNOW AND
EQUITABLY ENGAGE OUR USERS.
WITH THIS GOAL, WE WANT TO
EFFECTIVELY AND MEASURABLY
ENGAGE STAKEHOLDERS TO
FACILITATE ACCESS, DELIVERY AND
DISSEMINATION OF NLM AND NIH'S
TRUSTED HEALTH INFORMATION
RESOURCES.
SO THEN WE GOT INTO SOME
DISCUSSIONS ABOUT THIS, AND SOME
OF THE THINGS THAT WE TALKED
ABOUT WERE WE CHATTED ABOUT
HAVING SUFFICIENT FUNDS TO
ACQUIRE AND PROVIDE ACCESS TO
OUR ELECTRONIC JOURNALS, THEIR
ONGOING PRESERVATION AND OUR
COMMITMENT TO PROVIDING
INTERLIBRARY LOAN AND SUPPORTING
THE DOCLINE REQUEST SYSTEM.
THIS WORK IS CORE TO OUR MISSION
AND WILL CONTINUE TO BE A
PRIORITY.
WE WERE ASKED TO THINK ABOUT THE
WORK ELO IS DOING IN TERMS OF
SUPPORTING RESEARCH,
REPRODUCIBILITY, SCIENTIFIC
INTEGRITY, AND EVIDENCE-BASED
DISCOVERY.
IT WAS POINTED OUT THAT THE NEED
FOR REPRODUCIBILITY OF RESEARCH
IS COMING OUT MORE AND MORE IN
DIFFERENT VENUES.
SO ARE WE CONSIDERING THE QUELL
OF WHAT DOES IT TAKE TO
REPRODUCE RESEARCH, INCLUDING
THE WIDE RANGE OF OBJECTS
INVOLVED AND MACHINE
INTERACTIONS.
WE WERE ASKED ABOUT SOME OF THE
PROCESSES USED DURING OUR PLAN
AND ROLLOUT, INCLUDING HOW WILL
WE EVOLVE IT, WILL WE DO ANY
MILESTONE CHECKUPS, HOW WILL WE
PRIORITIZE RESOURCES AND MEASURE
OUTCOMES?
SO OVER THE NEXT THREE MONTHS,
WE'RE GOING TO PRIORITIZE SOME
LOW HANGING FRUIT AND IMPLEMENT
THAT.
AS WE BUILD EFFICIENCIES BY
ALIGNING SOME OF THE LIKE
FUNCTIONS, WE'LL FREE UP SOME
CAPACITY TO FOCUS ON NEW WORK.
AND THE OTHER PART THAT WE
HAVEN'T TSH WE HAVEN'T RETURNED
TO CAMPUS IN FULL CAPACITY,
ESPECIALLY DUE TO THE
RENOVATIONS THAT WE HAVE GOING
ON, SO WHAT WE WANT TO DO IS TO
RECOGNIZE THAT WE HAVEN'T DONE
SOME STUFF OVER THE LAST 2 1/2
YEARS.
THIS IS A UNIQUE OPPORTUNITY FOR
US TO NOT JUST RETURN TO WHAT WE
WERE DOING WHEN WE LEFT BUT
REALLY TAKE A HARD LOOK AT WHAT
HAVEN'T WE DONE, DO WE NEED TO
DO IT OR BETTER, DO WE NEED TO
DO IT DIFFERENTLY TO MAXIMIZE
EFFICIENCIES.
WE'VE RECOGNIZED THAT WE HAVE TO
ADAPT OUR PLAN AS TECHNOLOGY AND
SCIENCE EVOLVES OVER TIME AND/OR
MAYBE SUPPORT ANOTHER GLOBAL
PANDEMIC.
WHO KNOWS.
SO TO DO MEASURES, WE'RE USING
SMARTI, SPECIFIC MEASURABLE
ACHIEVABLE RELEVANT TIME BOUND
INCLUSIVE AND EQUITABLE GOALS,
AND METRICS TO BENCHMARK OUR
PROGRESS, AND WE'RE TYING THIS
INTO MEASURES OF REPORTING OUT
WITH THE NLM STRATEGIC PLAN
INITIATIVES AS WELL.
AND THE OTHER POINT OF
DISCUSSION WAS RELATED TO HEALTH
MISINFORMATION AND THE NEED TO
STRENGTHEN COLLABORATION ACROSS
OTHER AGENCIES LIKE THE CDC AND
CONNECTING WITH OTHER PUBLIC
GROUPS AND FAMILY GROUPS LIKE
THE NATIONAL ASSOCIATION OF
SCHOOL NURSES.
WE SEE OUR OFFICE OF ENGAGEMENT
AS TRAINING, WHICH SUPPORTS THE
NETWORK OF THE NATIONAL LIBRARY
OF MEDICINE AS A KEY PLAYER IN
OUR EFFORTS TO TACKLE THIS
CHALLENGE OF HEALTH MIS AND
DISINFORMATION.
SO THAT'S MY SUMMARY.
I WANT TO THANK EVERYONE IN OUR
COLLECTION GROUP FOR THEIR
THOUGHTFUL FEEDBACK.
I REALLY LOVE WORKING WITH THIS
GROUP.
WE ALWAYS HAVE GREAT
DISCUSSIONS, AND IT'S GREAT TO
HEAR THEIR PERSPECTIVES.
SO WITH THAT, I'M GOING TO OPEN
IT UP TO THE REST OF THE GROUP
TO SEE IF I MISSED FLIG OR IF
YOU WANTED TO ELABORATE OR ARE
THERE ANY OTHER QUESTIONS.
>> THANKS, DIANE.
THAT WAS AN INCREDIBLE SUMMARY.
I REITERATE, I MEAN, DIANE'S
COMMENT ABOUT THIS BEING A GREAT
GROUP TO WORK WITH, THERE ARE
ALWAYS SO MANY INTERESTING
CONVERSATIONS, AND THINKING
ABOUT WHAT KNOWLEDGE MEANS, HOW
KNOWLEDGE IS COMMUNICATED,
STORED AND MADE AVAILABLE.
IT'S ALWAYS A VERY INVIGORATING
CONVERSATION.
SO THANK YOU TO THE GROUP
MEMBERS AND TO DIANE.
>> THANKS, KRISTI.
ANYONE ELSE?
>> MAYBE JUST A POINT TO A
COMMENT, I THINK IT WAS MITCH
THAT MADE EARLIER IN ONE OF OUR
CONVERSATIONS AROUND AS WE LOOK
AT COLLECTIONS OF INFORMATION
ARTICLES, FIGURING OUT WAYS TO
HIGHLIGHT THE M ETA REVIEWS OR
SYSTEMATIC EVIDENCE-BASED
REVIEWS, THINGS WHERE THE MYRIAD
OF LITERATURE THAT'S OUT THERE
AND HOW CAN WE BUBBLE UP TO THE
TOP, SHALL WE SAY, THINGS THAT
ARE MORE RELIABLE.
IS THAT SOMETHING OF FOCUS?
>> DIANE, WHEN THIS WAS BROUGHT
UP IN OUR GROUP I THOUGHT IT
MIGHT BE AN OPPORTUNE TIME TO
TALK ABOUT THE SEARCH TAGS FOR A
MOMENT AND PERHAPS HOW PEOPLE
CAN USE MYNCBI TO AUTOMATICALLY
INVOKE THOSE.
>> SEARCH TAGS, ARE YOU TALKING
MESH TAGS OR METADATA?
>> THE METADATA.
BECAUSE WE CAN PULL FOR
SYSTEMATIC REVIEWS.
>> ABSOLUTELY.
AND THAT IS SOMETHING THAT WE'RE
NOT COMPLETELY INVOLVED IN, BUT
WE DO SUPPLY -- WE DO A LOT OF
CURATION TO MAKE THAT AVAILABLE,
THAT DATA AVAILABLE, WE'RE
REALLY MAXIMIZING OUR MESH IN
DIFFERENT FORMATS LIKE RDFs,
LINKED DATA AND THINGS LIKE THAT
TO REALLY MAKE MORE FINDABILITY
ACROSS DATASETS A POSSIBILITY.
DID YOU HAVE ANY SPECIFIC
RECOMMENDATIONS TIED TO THAT
THAT WE SHOULD CONSIDER?
>> IT SOUNDED LIKE AN
OPPORTUNITY DO SOME EDUCATION
ABOUT HOW AN INDIVIDUAL WOULD
SET UP A STRUCTURED SEARCH THAT
WOULD COME TO THEM IN THEIR
MAILBOX WEEKLY, AND THAT COULD
ALSO BE INVOKED ON DEMAND.
SO IT MAY BE AB OPPORTUNITY FOR
OUR NETWORK TO DO SOME CLINICAL
OUTREACH.
>> WE DO THAT ON A REGULAR
BASIS.
THAT'S A BIG PART OF THE
NETWORK' FOCUS, IS TEACHING
PEOPLE HOW TO USE OUR PRODUCT
AND SERVICES AT NLM, AND OF
COURSE IN THE LIBRARY COMMUNITY,
THEY ARE REALLY THE CHAMPIONS OF
PUTTING TOGETHER GOOD SEARCHES
AND REALLY LOOKING BEYOND THE
FOLD IN YOUR SEARCH RESULTS AND
HOW TO MAXIMIZE THE TOOLS,
ESPECIALLY THINGS LIKE ADVANCED
SEARCH AND THOSE MECHANISMS FOR
REFINING YOUR SEARCH AND
REALLY HITTING THE KEY TARGETED
RESULTS.
>> I THINK --
>> I'M SORRY, GO AHEAD, CLEM.
>> I WAS JUST GOING TO SAY YOU
MUST HAVE BEEN LISTENING IN ON
OUR CONVERSATION, BECAUSE ONE OF
THE -- I THINK ONE OF THE THEMES
PAUL HAD BROUGHT UP AND I THINK
KRISTI AS WELL WAS THIS NOTION
THAT INCREASED ATTENTION, EVEN
IN THE FEDERAL GOVERNMENT TO
EVIDENCE-BASED DECISION-MAKING
AND SO FORTH COULD BE CREATING
OR ACCENT
AK 16 TWAITING DEMAND FOR
CERTAIN TYPES OF INFORMATION,
THERE CAN BE WHOLE OTHER
PACKAGES OF INFORMATION AROUND
PARTICULAR FINDINGS, WHETHER
IT'S THE DATA AND THE PROTOCOLS
AND OTHERS, THAT WILL HELP
PEOPLE ASSESS THE RELIABILITY OF
FINDINGS AND THAT WAS MY BIG
NOTE AND TAKEAWAY FROM THE
DISCUSSION, WAS THAT WE MIGHT
NEED TO THINK ABOUT THOSE KINDS
OF USES AND USERS IN DIFFERENT
WAYS THAN WE HAVE IN THE PAST.
SO WELCOME YOUR IDEAS ABOUT HOW
TO DO THAT, BUT THAT'S AT
LEAST --
>> I THINK IT'S ANOTHER LEVEL
BEYOND -- BECAUSE I'VE USED
ADVANCED SEARCH AND STATED I
WANT REVIEWS AND THINGS LIKE
THAT, BUT EVEN IF YOU CLICK THE
REVIEWS BUTTON, YOU END UP WITH
STILL THOUSANDS OF THINGS THAT
COME UP.
SO THIS MIGHT END UP BEING
SOMETHING THAT REQUIRES SOME
ACTUAL MANUAL CURATION OR WAYS
TO EVEN ALLOW THE COMMUNITY TO,
I DON'T KNOW, UPVOTE THINGS THAT
ARE HIGH QUALITY RECENT SORT OF
BROAD TOPICS.
I HAVEN'T THOUGHT THROUGH IT,
BUT SOMETHING THAT'S SORT OF
ANOTHER LEVEL.
I SEE CLEM HAS HIS HAND UP.
DIANE, DID YOU WANT TO RESPOND
TO THAT?
>> JUST A QUICK RESPONSE.
THAT'S THE OTHER THING WITH THE
BEAUTY OF USING MESH TAGS IN
YOUR SEARCHING, ESPECIALLY NOW
THAT WE DON'T HAVE A BIG
BACKLOG, YOU DON'T HAVE TO AND
IN ANOTHER WHOLE SUBSET.
SO WHEN YOU'RE USING THE CONTROL
VOCABULARY, IT REALLY HELPS TO
DO A MUCH MORE FOCUSED SEARCH
AND OF COURSE WITH THE
SUBHEADINGS, YOU CAN GET ON SOME
OF THE ATTRIBUTES WITH SOME OF
THE DIFFERENT MAIN HEADINGS THAT
YOU'RE LOOKING FOR.
BUT THAT IS AVAILABLE THROUGH
OUR OFFICE OF ENGAGEMENT AND
TRAINING, AND IT IS A HIGHLY
REQUESTED TRAINING COURSE
THROUGH THE NETWORK AS WELL.
WHICH IS OPEN AND AVAILABLE TO
ANYONE.
>> THANKS.
CLEM?
>> SO THERE IS AN ACTIVE PROCESS
UNDERWAY, I THINK IT'S IN
CLINICALTRIALS.GOV, TO USE THE
FHIR EVIDENCE-BASED STRUCTURE
FOR SUBMISSIONS, AND I HAVEN'T
QUITE KEPT UP TO WHERE IT STANDS
NOW, BUT THIS STRUCTURE IS
SOMETHING THAT PERMITS OR
ENABLES THE COMBINING OF DATA
ACROSS STUDIES FOR ALL THE
PURPOSES PEOPLE ARE TALKING
ABOUT.
I HAVEN'T KEPT UP WITH IT IN THE
LAST COUPLE MONTHS, BUT THEY
WERE WORKING ON IT AND I THINK
IT'S MAKING GOOD PROGRESS.
>> GREAT.
THANK YOU.
>> I'LL BRING UP WITH PAUL JUST
PUT INTO THE CHAT JUST IN CASE
AS PART OF WHAT WE TALKED ABOUT
WAS TO BETTER UNDERSTAND HOW TO
MANAGE AND PROVIDE ACCESS TO
DIGITAL OBJECTS BEYOND JUST THE
LITERATURE TO INCLUDE DATA
PROTOCOLS, ET CETERA, FOR A
BROAD RANGE OF EVIDENCE
SYNTHESIS TASK TO INCLUDE
SYSTEMATIC REVIEWS, AND ASSIGN
REPRODUCIBILITY.
AND ALSO ANTICIPATING THE NEEDS,
THE LONG-RANGE LL PLANS, SO
THANKS, PAUL, FOR BRINGING THAT
UP.
>> OKAY.
THAT WAS A GREAT DISCUSSION, AND
WE ARE RIGHT ON TIME, JUST TWO
MINUTES OVER.
SO I THINK WE'RE GOING TO MOVE
ON TO OUR NEXT TOPIC AND
SPEAKER.
SO VALERIE SCHNEIDER IS GOING TO
GIVE AN UPDATE ON THE
COMPARATIVE GENOMICS RESOURCE
AND THE COMMUNITY ENGAGEMENT
STRATEGY.
VALERIE.
>> THANK YOU.
AND IN FACT, I'D LIKE TO THANK
THE NLM AND THE BOARD FOR THE
OPPORTUNITY TO PRESENT THE
COMMUNITY ENGAGEMENT STRATEGY
FOR THE COMPARATIVE GENOMICS
RESOURCE PROJECT TO YOU TODAY.
AS HEIDI MENTIONED, MY NAME IS
VALERIE SCHNEIDER, HEAD OF THE C
PLUS PROGRAM IN THE INFORMATION
ENGINEERING BRANCH AT NCBI, I'M
THE LEAD FOR THIS EFFORT.
I'M GOING TO APOLOGIZE FOR ANY
IPT
INTERRUPTIONS BY THIS LINGERING
COVID COUGH THAT I'VE GOT.
IN THIS PRESENTATION, I'LL BE
RE-INTRODUCING YOU TO CGR,
REVIEWING THE KEY POINTS FOR
EACH SECTION OF THE ENGAGEMENT
STRATEGY AND HIGHLIGHTING SOME
OF OUR ONGOING
ENGAGEMENT-RELATED ACTIVITIES
AND SHARING THEIR IMPACTS ON THE
CGR EFFORT.
AS I SPEAK TODAY, I INVITE YOU
TO THINK ABOUT ENGAGEMENT
OPPORTUNITIES IN YOUR OWN
COMMUNITIES FOR NCBI TO
INTRODUCE THIS PROJECT.
TODAY I'LL BE TALKING ABOUT THE
ENGAGEMENT STRATEGY FOR A
PROJECT THAT AIMS TO MAXIMIZE
THE BIOMEDICAL IMPACT OF
EUKARYOTIC RESEARCH ORGANISMS
AND THEIR GENOMIC DATA.
YOU'RE CARE YOATS ARE ORGANISMS
COMPRISED OF CELLS THAT HAVE
NUCLEI, BUT NOT BACTERIA AND
VIRUSES.
AND WHEN I TALK ABOUT RESEARCH
ORGANISMS IN THE CONTEXT OF CGR,
I'M TALKING ABOUT THE BROAD
COLLECTION OF ALL EUKARYOTES FOR
WHICH WE HAVE GENOMIC DATA.
CURRENTLY MORE THAN 9,000 --
SORRY -- ASSEMBLE GENOMES FROM
MORE THAN 9,000 SPECIES IN
GENBANK.
THE VALUE OF RESEARCH
ORGANIZISMS IS REALLY TWOFOLD.
UNDERSTANDING BIOLOGICAL
PROCESSES AND HUMAN DISEASE.
THE POWER OF THESE RESEARCH
ORGANISMS IS REALIZED TO
COMPARATIVE ANALYSES TO
SYSTEMATICALLY EXPLORE THEIR
BIOLOGICAL RELATIONSHIPS.
THIS APPROACH HAS BEEN USED TO
ADVANCE OUR UNDERSTANDING IN
AREAS AS DIVERSE SUCH AS
BIOCHEMICAL PATHWAY, ILLUSTRATED
HERE ON THE TOP RIGHT, CANCER AT
THE BOTTOM LEFT, HOST PATHOGEN
INTERACTIONS INCLUDING THE
SARS-COV-2 VIRUS, ALSO VISION
STUDIES, FORM COKINETICS AND
TRANSPLANTATION.
BUT WHEEL THEY OFFER GREAT
PROMISE THE CURRENT LANDSCAPE OF
INDIVIDUALIZED RESOURCES
PRESENTS INVESTIGATORS WITH
SEVERAL CHALLENGES.
THERE'S MULTIPLE DIFFERENT USER
INTERFACES, THERE'S ONLY A
LIMITED NUMBER OF ORGANISMS THAT
HAVE CORRESPONDING ROBUST DATA
RESOURCES, THE DATA AND THE
APPLICATIONS THEMSELVES CAN BE
SILOED AND USERS TYPICALLY HAVE
TO DOWNLOAD DAY TO APPLY TOOLS
SO THERE'S REALLY JUST A LIMITED
SCALABILITY IN THIS APPROACH.
TO ESTABLISH AN ECOSYSTEM TO
FACILITATE ANALYSES LOU A SUITE
OF REPOSITORIES AND KNOWLEDGE
BASES OFFERING HIGH VALUE DATA,
TOOLS AND INTERFACES THAT ARE
COMPATIBLE WITH COMMUNITY
PROVIDED ORGANISM RESOURCES.
SO WHILE USERS WILL STILL BE
ABLE TO ACCESS TOOLS AND
DATABASES AS THEY ALWAYS HAVE,
CGR WILL PROVIDE AN ADDITIONAL
AXIS POINT.
AS YOU CAN SEE, WITH THE RED
VERTICAL LINE WE ARE NEARING THE
COMPLETION OF ITS SECOND YEAR.
MULTIPLE INITIATIVES ARE
UNDERWAY TO SUPPORT THE
STRATEGIC GOAL SHOWN ON THE TOP
RIGHT HERE, WHICH ARE TO PROMOTE
HIGH QUALITY DATA SUBMISSION,
FACILITATE COMPARATIVE
BIOLOGICAL ANALYSES, ENRICH
NLM-PELD HELD GENOMIC RELATE
CONTENT AND SUPPORT WORKFORCE
DEVELOPMENT.
WITHIN EACH OF THOSE INITIATIVES
THERE ARE FREQUENT PRODUCT
VALLEYS THAT --
ILLUSTRATED BY THESE DIAMONDS AT
THE TOP OF THE IMAGE.
THIS MEANS THAT THE PUBLIC
DOESN'T HAVE TO WAIT FOR THE
OVERALL COMPLETION OF THE
PROJECT TO START REAPING THE
BENEFITS OF THE WORK.
SO WHAT EXACTLY IS THE CGR
PROJECT PROVIDING?
NCBI HAS BEEN DEVELOPING NEW AND
IMPROVED WEB AND PROGRAMMATIC
INTERFACES THAT FACILITATE THE
DISCOVERY ANALYSIS AND DELIVERY
OF EUKARYOTIC GENOME RELATED
CONTENT AND BY IMPLEMENTING FAIR
DATA STANDARDS DATA CAN BE
SEARCHED, BROWSED AND DOWNLOADED
MORE SEAMLESSLY AND ALSO BETTER
USED WITH A BETTER RANGE OF
STANDARD BIOINFORMATICS TOOLS
AND PLATFORMS IN THE COMMUNITY.
NEWLY IMPROVED ACCESSIBLE TOOLS
WILL ALSO PROVIDE THE GENOMICS
COMMUNITY WITH A CORE FOUNDATION
OF UNCONTAMINATED AND
CONSISTENTLY ANNOTATED
EUKARYOTIC GENOMES.
IN ADDITION TO THE TOOLS
PROVIDING HIGH QUALITY GENOMIC
DATA, IMPROVING AND SIMPLIFYING
COMPARATIVE ANALYSES.
A NEW COMPARATIVE GENOME VIEWER
ALLOWS QUICK COMPARISON AND
MAKES IT EASIER TO VISUALIZE
GENOMIC STRUCTURE CHANGES AND A
NEW DATABASE FOR BLASTS PROVIDES
REDUCED REDUNDANCY, FASTER
SEARCHES AND MORE INFORMATIVE
RESULTS.
CGR EFFORTS WILL ENHANCE CONTENT
AND CONNECT NCBI RESOURCES WITH
COMMUNITY PROVIDED RESOURCES TO
AMPLIFY THE IMPACT OF THIS DATA.
WE'RE DOING THIS ALREADY IN
TERMS OF ENGAGING IN ANNOTATION
EFFORTS.
LASTLY I'LL SAY WE ARE
DEVELOPING CONTENT AND TOOLS TO
SUPPORT EMERGING BIG DATA
APPROACHES TO COMPARATIVE
ANALYSES, AND THIS WILL MEET NEW
RESEARCH NEEDS AND ANTICIPATED
DATA GROWTH.
SO I WOULD INVITE YOU TO CHECK
OUT THE CGR WEBSITE TO LEARN
MORE ABOUT THE RESOURCES AND
TOOLS THAT ARE PART OF THIS
PROJECT, THE RED BOX HIGHLIGHTS
HOW YOU CAN FIND SOME OF THE
THINGS IN THE PUBLIC DOMAIN
ALREADY.
I WANT TO BRIEFLY SHARE AN
OVERVIEW OF CGR OVERSIGHT WITH
YOU, THE GOVERNANCE STRUCTURE IS
SHOWN ON THE SLIDE.
DOWN HERE AT THE BOTTOM, THE
ROLE OF NCBI IS TO ESTABLISH THE
STRATEGIC ROAD MAP AND RELEASE
PLAN, INTEGRATE COMMUNITY
FEEDBACK AND IMPLEMENT THAT
PLAN, WHILE WE'RE MONITORING AND
ESTABLISHING SUCCESS METRICS AND
TRACKING AND REPORTING OUR
BUDGET.
OVER ON THE LEFT, I'LL TALK
ABOUT THE FIRST OF TWO NIH
GOVERNING BODIES THAT WE REPORT
TO.
THE FIRST IS AN NIH CGR STEERING
COMMITTEE.
IT MONITORS THE BUDGET, PROJECT
PROGRESS AND ENSURES IT REMAINS
WITHIN ITS APPROVED AND FUNDED
SCOPE.
AND AMPLIFY COMMUNICATIONS ABOUT
CGR VALUE TO NIH STAKEHOLDERS
FOR NOT JUST CGR BUT ALSO OTHER
RESEARCH FOR RESEARCH ORGANISMS.
THE SECOND ON THE RIGHT IS AN
NLM CGR BOARD OF REGENTS WORKING
GROUP, CHAIR IS DR. KRISTI
HOLMES AND WE ARE ASSOCIATED
WITH THE COLLECTION WORKING
GROUP CHAIRED BY DIANE BABSKI.
THE PRIMARY FUNCTION IS TO HELP
ENGAGE THE SCIENTIFIC COMMUNITY
AND IN DOING SO HELP NLM SET
PRIORITIES AND GUIDE THE
DEVELOPMENT OF A NEW APPROACH TO
SCIENTIFIC DISCOVERY THROUGH THE
CGR OUTCOMES.
AS YOU CAN SEE, THEY PLAY A KEY
ROLE IN COMMUNITY ENGAGEMENT FOR
CGR.
THIS YEAR NCBI ESTABLISHED A
WORKING RELATIONSHIP WITH NDR.
WE FELT THIS WAS IMPORTANT
BECAUSE IT'S NOT ENOUGH FOR NCBI
TO SIMPLY ANNOUNCE THE OUTPUTS
OF THE CGR PROJECT TO THE
PUBLIC.
RATHER, IN ORDER FOR THIS
PROJECT TO SUCCEED AND BE WIDELY
ADOPTED BY THE COMMUNITY, WE
NEED TO BE ENIMAIJING ENGO
LEARN ABOUT WHAT RESOURCES IN
NCBI AND THOSE IN THE BROADER
COMMUNITY WORK AND DON'T WORK
FOR GENOMICS IN THEIR RESEARCH,
TRAINING AND EDUCATION, AS WELL
AS FIND OUT HOW WE CAN MAKE
THINGS BETTER FOR THEM.
SO THE OUTREACH AND ENGAGEMENT
ACTIVITIES COMPASS THE FOUR
AREAS SHOWN ON THE SLIDE.
IN THE AREA OF COMMUNICATIONS,
THEY'RE HELPING US DEVELOP
OUTREACH MATERIALS THAT INSPIRE
SPECIFIC AUDIENCES TO TAKE
SPECIFIC ACTIONS, THUS
GENERATING EXCITEMENT FOR CGR
AND INCREASING ITS USE.
THE ENVIRONMENTAL SCAN IS AN
ACTION TO RESEARCH GENOMICS
RESOURCES TO UNDERSTAND THE
ENVIRONMENT THAT CGR IS JOINING
AND IDENTIFY RESEARCH GAPS THAT
CGR CAN HELP FILL.
IN THE AREA OF DATA COLLECTION,
WE'VE BEEN INTERVIEWING
STAKEHOLDERS TO UNDERSTAND THEIR
COMPARATIVE GENOMICS WORKFLOWS
AND EXISTING NEEDS TO INFORM THE
CGR DEVELOPMENT AND FURTHER
CONNECTIONS THAT WE'RE MAKING,
AND LASTLY, WE'RE CREATING AN
ENGAGEMENT STRATEGY AND TODAY
WE'LL BE LOOKING AT THAT
STRATEGY.
SO AS DESCRIBED HERE, THE
COMMUNITY ENGAGEMENT STRATEGY
PROVIDES A FRAMEWORK FOR
REACHING OUT AND ACTIVELY
ENGAGING STAKEHOLDERS TO SPREAD
AWARENESS OF CGR INVOLVED IN
THESE CONTRIBUTORS AND PARTNER
WITH THEM AS ADVOCATES.
THE FRAMEWORK INCLUDES A NUMBER
OF THINGS INCLUDING PROPOSED
ENGAGEMENT METHODS,
COMMUNICATIONS NEEDED TO SUPPORT
THEM, AND A MEASUREMENT PLAN TO
ASSESS STAKEHOLDER ENGAGEMENT
AND IDENTIFY OPPORTUNITIES TO
MAXIMIZE THE ENGAGEMENT PLAN'S
EFFICACY.
THERE ARE THREE MAIN COMPONENTS
TO THE ENGAGEMENT STRATEGY
FRAMEWORK.
THEY ARE ENGAGEMENT,
COMMUNICATION AND MEASUREMENT.
FIRST WELL HAVE THIS HIGH LEVEL
ENGAGEMENT STRATEGY WHICH IS
FOCUSED ON REACHING OUT TO THREE
PRIMARY STAKEHOLDER GROUPS WHICH
I'LL INTRODUCE SHORTLY.
AND THIS SECTION ALSO DEFINES AN
ENGAGEMENT PROCESS THAT RELIES
ON A FEEDBACK LOOP BY WHICH
ENGAGEMENTS ARE PLANNED --
SECOND WE HAVE A COMMUNICATIONS
COMPONENT TO EXISTING ISSUES AND
FINALLY WE HAVE A MEASUREMENT
COMPONENT THAT ALLOWS THE CGR
PROJECT TO MEASURE A SUCCESS IN
AREAS SUCH AS STAKEHOLDER
ENGAGEMENT, COMMUNICATIONS, AND
TRAINING IN WORKFORCE
DEVELOPMENT.
I'LL POINT OUT THIS COMPONENT
INCLUDES BOTH PROCESS AND
OUTCOME MEASURES THAT ALIGN TO
NEAR TERM AND LONG TERM
OPPORTUNITIES.
--
ACTIVITIES.
SO LET'S FIRST TAKE A LOOK AT
THE ENGAGEMENT SECTION, THEN
WE'LL COVER THE STAKEHOLDER
GROUPS, THEIR ROLES AND
PROCESSES FOR THE ENGAGEMENT
STRATEGY.
WE IDENTIFIED THREE HIGH LEVEL
STAKEHOLDER GROUPS FOR CGR FOR
THE FOCUS OF THE INITIAL
STRATEGY.
AND WHILE ENGAGEMENT WITH ALL
THREE GROUPS DO OCCUR
CONCURRENTLY WE'RE VERY MUCH
TAKING A PHASED APPROACH IN
WHERE WE'RE APPLYING OUR FOCUS
TO THE DIFFERENT GROUPS.
SO FOR EXAMPLE, THE RECENTLY
COMPLETED FIRST PHASE OF
ANALYSIS EMPHASIZED DATA
COLLECTION FROM A GROPE KNOWN AS
THE CGR CHAMPIONS.
CHAMPIONS INCLUDE BOARD OF
REGENTS CGR WORKING GROUP
MEMBERS, STEERING COMMITTEE
MEMBERS, NCBI SENIOR LEADERS AND
PRODUCT TEAM LEADS.
CHAMPIONS ARE RESPONSIBLE FOR
CONTRIBUTING TO CGR'S
DECISION-MAKING AS WELL AS
IDENTIFYING SUCCESS WITH
STAKEHOLDER GROUPS.
THEY PROVIDE PRIMARY ENERGY FOR
THE GROUP AND DECISIONS MADE TO
MOVE THIS PROJECT FORWARD.
PHASE TWO WHICH WE'RE IN TODAY
FOCUSES ON A GROUP KNOWN AS CGR
ENABLERS.
ENABLERS INCLUDE RESEARCH OR
GOVERNMENT ORGANIZATIONS,
PROFESSIONAL SOCIETIES AND
GROUPS THAT ARE LIKELY
CONTRIBUTORS OF DATA TOOLS OR
GUIDANCE.
BOTH THE WORKING GROUP AND
STEERING COMMITTEE HAVE
EMPHASIZED THE IMPORTANCE OF
PROFESSIONAL SOCIETIES IN
DISSEMINATING INFORMATION AND
WE'RE SOON REACHING OUT TO
SEVERAL OF THESE.
I'LL ALSO POINT OUT THAT
ENABLERS ARE CONDUITS TO USERS
BECAUSE THEY PROVIDE ADDITIONAL
OPPORTUNITIES TO REACH POTENTIAL
USERS AND CONTRIBUTORS WHILE
ADDING A LEVEL OF AUTHORITY AND
TRUST, AND THEIR INSIDER VIEW
INTO THE LARGER COMPARATIVE
GENOME COMMUNITY PROVIDES
CRITICAL OPPORTUNITIES FOR
CONTINUOUS FEEDBACK THAT HELPS
CGR RESPOND FLEXIBLY TO THE
ENVIRONMENT.
PHASE III WHICH WE'LL BE
ENTERING TOWARDS THE END OF THIS
YEAR FOCUSES ON CGR USERS, AND
THESE ARE STAKEHOLDERS WHO
ACTIVITY USE CG.
R AND WE'VE
DEVELOPED FICTIONAL
REPRESENTATIONS OF DIFFERENT
ANTICIPATED USER GROUPS AS
ILLUSTRATED HERE.
AND THE PHASE TWO RESEARCH AND
ENGAGEMENTS WILL DEFINE HOW TO
EFFECTIVELY TARGET THESE GROUPS
AND HOW WE CAN BEST ADAPT TO
THEIR NEEDS.
I'D NOW LIKE TO SAY A FEW WORDS
OF WHAT WE'VE SAID SO FAR AND
HOW WE PROCEED WITH ENGAGEMENT.
THE RESEARCH FROM PHASE ONE
IDENTIFIED AREAS ON WHICH TO
FOCUS AS WE ENTER PHASE TWO TO
ENSURE THE SUCCESS OF THE
OUTREACH.
THESE INCLUDED EMPHASIZING THE
KEY DISTINGUISHING FEATURES OF
CGR IN OUR COMMUNICATIONS
MATERIALS, NAMELY ITS
COMPARATIVE ASPECT AND THE
CENTRALIZATION AND
STANDARDIZATION FEATURES THAT IT
OFFERS.
WE ALSO WORK TO CLARIFY WHAT CGR
IS AND WHAT IT IS NOT BECAUSE AS
WE ARE IN PHASE TWO, THERE'S A
DECREASED NEED FOR THESE HIGH
LEVEL DISCUSSIONS ABOUT IT AND
AN INCREASED NEED FOR MORE
CONCRETE SPECIFIC EXAMPLES OF
HOW IT CAN BE USED.
ADDITIONALLY WE WORK TO CLARIFY
IN OUR MESSAGING WHAT USERS CAN
EXPECT FROM C TB. R IN THE LONG
TERM WHILE REMAINING FLEXIBLE IN
THE EXECUTION OF THOSE GOALS SO
WE CAN REFLECT THE FEEDBACK THAT
WE HEAR IN WHAT WE DELIVER.
LASTLY, WE'VE CONTINUED OUR
RESEARCH INTO THE
INTEROPERABILITY OF TOOLS AND
SOFTWARE THAT ARE WIDELY USED IN
DATA ANALYSIS THAT MAY NOT
SPECIFICALLY BE USED FOR
COMPARATIVE GENOMICS RESEARCH TO
BETTER UNDERSTAND HOW THEY MIGHT
BE ABLE TO CONTRIBUTE TO CGR.
THIS CHART DESCRIBES THE
STAKEHOLDER ENGAGEMENT PROCESS
WE'RE USING IN PHASE TWO.
I'M GOING TO BRIEFLY STEP YOU
THROUGH IT.
ONICS THE LEFT IN THE FIRST
STEP, CGR CHAMPIONS INTRODUCED
CGR TO STAKEHOLDERS.
THE ARROWS INDICATE THE
DIFFERENT CATEGORIES OF
CHAMPIONS WILL FOCUS ON MAKING
INTRODUCTIONS TO DIFFERENT
CATEGORIES OF STAKEHOLDERS.
ONCE INTRODUCTIONS ARE MADE,
CHAMPIONS ASSESS THE OUTCOMES TO
IDENTIFY AND INFORM NCBI OF WHAT
TYPES OF FOLLOW-UP ENGAGEMENTS
THEY SHOULD PERFORM.
AND ASSESSMENTS ARE MADE USING
SIMPLE CHECKLISTS THAT ASK ABOUT
THE STAKEHOLDER'S RESPONSE TO
THE INTRODUCTION.
FOR EXAMPLE, IF A STAKEHOLDER
INDICATED THAT THEY WERE
INTERESTED IN PROVIDING FEEDBACK
ON A CGR CONCEPT, THEN AN
NCBI-HOSTED LISTENING SITION
MIGHT BE SESSION
MIGHT BE IN ORDER.
THESE FOLLOW-UPS ARE CONDUCTED
BY NCBI.
SUBSEQUENT TO A FOLLOW-UP, NCBI
WILL RE-ASSESS TO DETERMINE IF
FOLLOW-UPS ARE NECESSARY OR
ENGAGEMENTS RESULTED IN DESIRED
OUTCOMES.
IN THE LATTER CASE, THEY'LL
RECEIVE ROUTINE OUTREACH DEFINED
IN THE COMMUNICATIONS PLAN BUT
IF NOT, ADDITIONAL FOLLOW-UPS
WILL BE PERFORMED.
IT'S IMPORTANT TO NOTE HERE THAT
THIS IS REALLY A BIDIRECTIONAL
RELATIONSHIP WHERE BOTH PARTIES
REALIZE VALUE, THE CHAMPIONS
RECEIVE FEEDBACK FROM
STAKEHOLDERS TO IMPROVE THE
ENGAGEMENT STRATEGIES AND THE
RELATED COMMUNICATIONS.
SO ALONG THE BOTTOM, YOU'LL SEE
THAT THERE'S CONSTANT MONITORING
THROUGH THE PROCESS, AND THIS IS
TO ENSURE THE STRATEGY,
MESSAGING AND MATERIALS ARE
CONSTANTLY ITERATED AND IMPROVED
AS WE LEARN WHAT WORKS WELL AND
WHAT NEEDS ADJUSTMENT.
THE ASSESSMENT ALSO ENSURES
WE'RE MOVING THROUGH OUR LIST OF
STAKEHOLDERS AND GETTING
MEETINGS ON THE CALENDAR.
NEXT WE'LL TAKE A LOOK AT THE
WORK TO DEVELOP -- HOW WORK TO
DEVELOP AND DELIVER CGR
COMMUNICATIONS WILL PROCEED.
TO PROMOTE THEIR PRODUCTS AND
INVOLVE STAKEHOLDERS FLOO. THIS
SLIDE PROVIDES AN OVERVIEW OF
THE COMMUNICATIONS AND OUTREACH
STRATEGIES FOR ENGAGEMENTS
HAPPENING IN THE NEAR TERM,
SPECIFICALLY JULY THROUGH THE
END OF OCTOBER.
THE TEAM CREATED A LIST OF
SPECIFIC RECURRING, EVENT-BASED
AND ENABLER FOCUSED ENGAGEMENTS,
SOME GENERAL EXAMPLES ARE SHOWN
ON THE SLIDE WHICH WILL TAKE
PLACE OVER THE DURATION OF PHASE
TWO, AND MESSAGING MATERIALS AND
ACTIVITIES TO SUPPORT THESE
ENGAGEMENTS HAVE BEEN CREATED.
ON THE LEFT-HAND SIDE OF THIS
SLIDE HERE, YOU CAN SEE THAT THE
KEY MESSAGES BEING USED IN THE
COMMUNICATION MATERIALS
EMPHASIZING THE BENEFITS OF CGR
TO USERS, AND ON THE RIGHT-HAND
SIDE OF THIS SLIDE, WE SEE SOME
AREAS IN WHICH WE'RE ACTIVELY
WORKING TO IMPROVE OUR
MESSAGING.
A FEW OF THESE OF NOTE INCLUDE
THE DEVELOPMENT OF A PUBLIC
FACING CGR ROAD MAP WHICH WILL
BE PUBLISHING ON THE CGR WEBSITE
AND SHARING IN OUR UPCOMING
PRESENTATIONS.
WE'RE ALSO AGAIN AS I MENTIONED
DEVELOPING MESSAGING TARGETED TO
SPECIFIC STAKEHOLDER GROUPS.
WORKING TO FURTHER CLARIFY OUR
INTENTIONS AND OUR MESSAGING FOR
A FEW AREAS INCLUDING USE OF THE
CLOUD, AND WORKFLOWS.
SO THERE ARE VARIOUS
COMMUNICATION CHANNELS THAT WE
CAN LEVERAGE TO ENGAGE
STAKEHOLDERS, AND THEY FALL INTO
THREE MAIN CATEGORIES AS
ILLUSTRATED HERE.
DIRECT CHANNELS ALSO KNOWN AS
PUSH COMMUNICATIONS ARE USED TO
DELIVER PROJECT INFORMATION TO
STAKEHOLDERS THAT'S TIMELY AND
RELEVANT AND RESONATES WITH
THEM.
AND THIS INCLUDES PROMOTING CGR
THROUGH SUBSCRIBED EMAILS,
PUBLICATIONS, SOCIAL MEDIA,
PRODUCT ANNOUNCEMENTS AND
SURVEYS.
INDIRECT CHANNELS WHICH ARE ALSO
CONSIDERED POLL COMMUNICATIONS
PROVIDE ACCESS TO CGR
INFORMATION THAT STAKEHOLDERS
CAN PROACTIVELY RETRIEVE AND
THIS INCLUDES THEIR EXPERIENCE
WITH THE NCBI PRODUCTS THAT ARE
A PART OF CGR, THE CGR WEBSITE
AND SELF SERVICE PRODUCTS LIKE
FAQs AND FACT SHEETS.
INTERACTIVE -- AS WELL AS
CONFERENCES AND OTHER MEETINGS,
TRAINING, CODEATHONS, WORKSHOPS
AS WELL AS THE NCBI HELP DESK.
ON THIS SLIDE HERE I'M JUST
GIVING YOU A QUICK GLANCE AT THE
TYPES OF ENGAGEMENTS THAT NC BSM
I ALREADY EMBARKED UPON.
SOME HIGHLIGHTS INCLUDE
BRIEFINGS OF PRINCIPAL
INVESTIGATORS AND PROGRAM
OFFICERS, AND WE WILL CONTINUE
TO EXPAND IN THIS AREA.
OUR PARTICIPATION IN AN
INTERAGENCY COMPARATIVE GENOMICS
INTEREST GROUP, BLOGS ABOUT THE
PROJECT AND ITS CONSTITUENT
TOOLS AND IN JULY, WE LAUNCHED
AN EMAIL MARKETING CAMPAIGN AND
ALREADY HAVE MORE THAN 600
SUBSCRIBERS.
WE'VE INITIATED CONVERSATIONS
WITH TECHNOLOGY PLATFORMS LIKE
CYBER SO WE'VE ENGAGED WITH A
GROUP KNOWN AS ICASR, THE
INTERNATIONAL CONSORTIUM TO
ADVANCE CROSS SPECIES USING
COMPARATIVE GENOMICS IN
TOXICOLOGY RESEARCH.
TWO WELL ESTABLISHED MODEL
ORGANISM DATABASES BOTH OF WHOM
WITH WHICH WE'LL NOW BE HAVING
REGULAR MEETINGS.
WE'VE BEEN TESTING OUR
DEVELOPING RESOURCES EXTENSIVELY
WITH USERS, AND WE HELD OUR
FIRST ONLINE LISTENING SESSION
JUST LAST MONTH AND HAVE AN
ADDITIONAL FOUR SCHEDULED,
INCLUDING AN UPCOMING IN-PERSON
ONE AT THE MEETING FOR THE
AMERICAN SOCIETY OF HUMAN
GENETICS.
SO THROUGH ALL THESE ACTIVITIES,
WE'RE ENGAGING WITH A DIVERSE
REPRESENTATION OF STAKEHOLDERS
FROM THE COMPARATIVE GENOMICS
COMMUNITY, INCLUDING THOSE THAT
ARE AT THE LEADING EDGE OF
RESEARCH AND DEVELOPMENT.
THE CGR WORKING GROUP CHAIR AND
MEMBERS OF THE WORKING GROUP
HAVE ALSO BEEN RAISING AWARENESS
IN THEIR RESPECTIVE COMMUNITIES
AND ARE NOW POISED DO SO
EXTENSIVELY.
SO I'LL JUST SAY IT'S BEEN A
BUSY START AND WE EXPECT THESE
NUMBERS WILL GROW SIGNIFICANTLY
AS WE PROCEED THROUGH PHASE TWO.
THIS SLIDE PROVIDES A HIGH LEVEL
OVERVIEW OF OUR UPCOMING CGR
ENGAGEMENTS.
WE'RE ALSO TALKING WITH SEVERAL
INDIVIDUAL USERS HIGHLIGHTED
HERE IN THIS BLUE BOX THAT
REPRESENTS A MIX OF COMMUNITY
DATABASE, PROFESSIONAL SOCIETIES
AND TECHNICAL PLATFORMS WE'VE
PRIORITIZED FOR OUR INITIAL
CONTACTS.
NCBI HAS RELAITION SHIPS WITH
SEVERAL OF THESE ALREADY SO THE
EMPHASIS NOW IS GOING BACK AND
COMMUNICATING TO THEM ABOUT THE
CGR PROJECT.
THE MONTHS HERE ALSO REFLECT
NUMBER OF THE MEETINGS THAT
WE'LL BE ATTENDING.
THESE ARE MOVING AMINOINGFUL TO
THE CGR PROJECT.
JUST BRIEFLY LET ME SHARE A
COUPLE OF EXAMPLES.
FROM CHAMPIONS SUCH AS THE NLM
BOARD OF REGENTS CGR WORKING
GROUP WE'VE LEARNED ABOUT GAPS
IN OUR MESSAGING AND ITS TONE.
JUST LAST WEEK IN OUR MEETING
WITH THE WORKING GROUP WE
LEARNED BY OVEREMPHASIZING THE
EMPHASIS ON HUMAN HEALTH OF CGR,
WE MIGHT BE OFF-PUTTING TO
RESEARCHERS WHO ARE FOCUSED ON
BIODIVERSITY AND EVOLUTION AS
THEY WORK ON VARIOUS EUKARYOTIC
ORGANISMS.
AND THAT WOULD BE PROBLEMATIC
BECAUSE IT MIGHT LIMIT
SUBSEQUENT ENGAGEMENTS WITH THEM
AND THE AMPLIFICATION OF THEIR
DATA, BECAUSE THAT DATA, EVEN IF
THEIR FOCUS IS BIODIVERSITY OR
EVOLUTION, THE DATA IS STILL OF
BENEFIT TO HUMAN HEALTH SO WE
WANT TO MAKE SURE THAT WE
CONNECT WITH IT.
FROM ENABLERS, WE'RE ALSO
LEARNING ABOUT THE CGR MECHANISM
OF WHICH CGR WILL BE A PART.
FOR EXAMPLE BOTH FROM THE
ALLIANCE OF GENOME RESOURCES
AND -- THESE WELL ESTABLISHED
ORGANISM MODEL DATABASES, WE'VE
IDENTIFIED ONTOLOGIES AND GINO
MORPHOLOGIES IN TWO AREAS WHERE
WE CAN PURSUE FURTHER
CONVERSATIONS WITH ONE ANOTHER.
WE'VE ALSO IDENTIFIED SPECIFIC
DATA EXCHANGE AND DEVELOPMENT
OPPORTUNITIES AND ARE
COLLABORATING ON IMPROVEMENTS TO
ANNOTATIONS AND INSECT GENOMES,
VECTORS OF HUMAN DISEASE AS WELL
AS RAT.
AND FROM USER, WE'VE RECEIVED
IMPORTANT PRODUCT DEVELOPMENT
FEEDBACK.
FOR EXAMPLE, WE LEARNED IF WE
WANTED TO ENSURE ADOPTION OF OUR
PUBLIC CONTAMINATION SCREENING
TOOL THAT HELPS ENSURE THAT
SUBMITTED GENOMES ARE OF HIGH
QUALITY, WE'D NEED TO MAKE SURE
IT WAS AVAILABLE IN THE SINK
LAIRT CONTAINERRIZATION
FRAMEWORK AS THIS IS THE
FRAMEWORK THAT MOST OF THE
COMMUNITY USES.
SO THESE ARE JUST A FEW
HIGHLIGHTS ILLUSTRATING HOW THE
STRUCTURED APPROACH TO
ENGAGEMENT IS PAYING OFF FOR US
AS WELL AS ULTIMATELY FOR OUR
USERS.
THE TEAM ALSO CREATED A SERIES
OF COMMUNICATION AND OUTREACH
RECOMMENDATIONS TO SUPPORT
STAKEHOLDER ENGAGEMENTS THAT ARE
GOING TO BE TAKING PLACE FURTHER
OUT AND THOSE ARE SHOWN ON THIS
SLIDE HERE BRIEFLY AND INCLUDE
UPDATING ENGAGEMENT STRATEGY,
CREATING NEW MESSAGING AND
COMMUNICATIONS PRODUCTS, WHICH
MIGHT INCLUDE BUT AREN'T
NECESSARILY LIMITED TO THE
DEVELOPMENT OF USER STORIES,
DEMOS AND TRAINING MATERIALS,
WORK WILL ALSO FOCUS ON REFINING
THE OUTREACH PROCESS AND SUPPORT
FOR CHAMPIONS AND LAST BY TAKING
ADVANTAGE OF CODEATHONS AND
DESIGNING WORKSHOPS THAT CAN
ADDRESS SPECIFIC STAKEHOLDER
NEEDS OR QUESTIONS.
SO LASTLY THE MEASUREMENT
SECTION PROPOSES A SAMPLING OF
PROCESS AND OUTCOME MEASURES
THAT NCBI CAN USE TO ASSESS OUR
PROGRESS TOWARDS MEETING GOALS
AND OBJECTIVES.
ENGAGEMENT MEASURES ARE GROUPED
INTO CATEGORIES OF ENGAGEMENT
ACTIVITY.
THESE ACTIVITIES WORK TOGETHER
TO FULFILL CGR ENGAGEMENT AND
ACHIEVE THE DESIRED OUTCOMES.
SO I'LL MOVE ON TO THE NEXT
SLIDE.
AS DESCRIBED IN THE PLAN, THE
ENGAGEMENT CATEGORIES INCLUDE
BOARD OF REGENTS WORKING GROUP
ENGAGEMENT AND PROMOTION, AS
WELL AS TRAINING AND WORKFORCE
DEVELOPMENT.
THESE CATEGORIES CAN BE
EXPANDED, MODIFIED OR REDUCED AT
ANY TIME TO BETTER SUIT NCBI'S
MEASUREMENT NEEDS.
THIS SECTION OF THE PLAN ALSO
INCLUDES A LISTING OF THE
ENGAGEMENT SUCCESS MEASURES FOR
EACH OF THESE CATEGORIES THAT
THE BOARD OF REGENTS WORKING
GROUP SHARED AND NCBI WORKED
TOGETHER TO DEFINE.
ANYWHERE FROM FIVE TO 15
MEASURES WERE DEFINED FOR EACH
CATEGORY.
THEN MIDR SUPPORTED US BY
CATEGORIZING THE INDIVIDUAL
MEASURES IN EACH CATEGORY INTO
PROCESS AND OUTCOME MEASURES AS
WELL AS WHETHER THEY ARE NEAR
TERM OR PERHAPS LONG TERM OR
EVEN CONTINUOUS.
AND WE DID THIS BECAUSE IT'S
IMPORTANT TO HAVE A BALANCE OF
THESE TYPES OF MEASURES IN ORDER
TO HAVE A WELL-ROUNDED PICTURE
OF THE EFFECTIVENESS OF THE
ENGAGEMENTS.
WE THEN SURVEYED MEMBERS OF THE
NIH WORKING GROUP AND CGR
STEERING COMMITTEE IN ORDER TO
PRIORITIZE THE MEASURES FOR EACH
CATEGORY.
THE SURVEY WAS ORGANIZED BY
DR. KRISTI HOLMES, OUR CHAIR, IN
CONJUNCTION WITH THE NCBI AND
MIDR TEAMS AND CARRIED OUT BY
THE NATIONAL EVALUATION CENTER.
I WANT TO POINT OUT THIS
ACTIVITY WAS REALLY VERY
IMPORTANT, BECAUSE WHILE IT'S
POSSIBLE TO MEASURE MANY THINGS,
IT'S EVEN MORE IMPORTANT TO KNOW
WHICH OF THOSE MEASURES IS BEST
ALIGNED WITH THE GOALS OF THE
STRATEGY AND WILL INDICATE OUR
PROGRESS IN EFFECTING CHANGE.
SO FOR EACH OF THE ENGAGEMENT
CATEGORIES ON THE RIGHT SIDE OF
THE SLIDE, SURVEY RESPONDENTS
WERE ASKED TO FOCUS ON THREE
MAIN CRITERIA AS THEY PRIORITIZE
THE PROPOSED MEASURES, NAMELY
HOW WELL DOES THE ENGAGEMENT
REFLECT -- AND HOW DOES IT I
INFORM THE DESIRED OUTCOME FOR
THE CATEGORY.
THIS SLIDE PROVIDES AN EXAMPLE
OF THE TYPES OF RESULTS AND
THOSE IN SPECIFIC THAT WE GOT
FROM THE ENGAGEMENT AND
PROMOTION MEASURES CATEGORY.
THE VARIOUS MEASURES ARE LISTED
HERE ON THE TABLE LEFT, ORDERED
IN DECREASING PRIORITY ACCORDING
TO ALL SURVEY RESPONSES.
AND ON THE RIGHT, THE GRAPH
SHOWS THE BREAKDOWN BY
RESPONDENT ROLE.
EITHER THE BOARD OF REGENTS
WORKING GROUP MEMBERS OR THE
STEERING COMMITTEE.
AGAIN I'M NOT GOING TO DELVE
INTO ALL THESE DEA TAILS BUT
JUST POINT OUT THIS
STRATIFICATION OF RESULTS IS
USEFUL INFORMATION BECAUSE WHEN
WE SEE DIFFERENCES SUCH AS THE
ONE ILLUSTRATED HERE, IT ALLOWS
US THE OPPORTUNITY TO GO BACK
AND TALK TO THESE GROUPS AND
PROBE FOR INFORMATION THAT MIGHT
INFORM THE FINAL RANKING.
SO WE ALSO RECEIVED FEEDBACK
SUGGESTING SOME OTHER MEASURES
THAT HAD DO WITH THE IMPACT OF
THE PROJECT OVERALL AND NOT JUST
THE SUCCESS OF THE ENGAGEMENT
ACTIVITIES.
THEE INCLUDE MEASUREMENTS OF THE
USE OF CGR TOOLS, SPECIFICALLY
BY SMALL OR LESS FUNDED
INSTITUTIONS, LEARNING --
MEASURING THE BUZZ IN THE
COMMUNITY, REQUESTS THAT ARE
MADE TO CONNECT NIDDK NCBI RS
AS WELL AS RELATED TOOLS.
WE'RE TAKING NOTE OF THESE AS
WELL AS THE CORRESPONDING
METRICS TO EVALUATE THE OVERALL
SUCCESS OF THE PROJECT AND WE'LL
BE CONTINUING TO WORK WITH THE
WORKING GROUP IN THAT AREA.
SO HAVING COMPLETED THE SURVEY,
WE'RE NOW FOCUSED ON THE
ACTIVITIES LISTED ON THIS SLIDE
AND I JUST WANT TO WRAP UP MY
PRESENTATION BY FOCUSING ON
ADVERSITIES.
THAT HAS TO DO WITH REFINEMENT
OF THE MEASURES THAT WE SURVEYED
INTO SMART MEASURES WITH
ACHIEVABLE BASELINES AND
MEASURES.
ADDITIONALLY, WE WANT TO SELECT
A FEW CRITICAL ENGAGEMENT
MEASURES THAT CAN SERVE AS
INDICATORS OF GENERAL LEVELS AND
ESTABLISH BASELINES FOR THOSE.
SO AS PART OF THIS WORK, JUST
LAST WEEK AT OUR MEETING WITH
THE CGR WORKING GROUP, WE
GATHERED THEIR FEEDBACK IN
SETTING TARGETS FOR THE MEASURES
IN THE BOARD OF REGENTS WORKING
GROUP AND ENGAGEMENT PROMOTION
MEASUREMENT SECTION.
THOSE MEASURES ARE LISTED HERE.
DID SCRIBED AS SMART GOALS.
AND ALSO WE FELT THEIR INPUT IN
PROVIDING TARGETS FOR THIS
ENGAGEMENT SECTION WAS EXTREMELY
CRITICAL AS THESE ARE THE
MEASURES THAT INVOLVE THE MOST
WORKING GROUP MEMBER ENGAGEMENT
AND COMMITMENT AND FOR EACH OF
THE MEASURES, WE WANTED TO FIND
THE MOST ACHIEVABLE TARGET THAT
WILL ENABLE DETERMINATION OF
SUCCESS.
THIS WAS VERY ENLIGHTENING FOR
US AND HELPS US TO UNDERSTAND
HOW WE CAN USE THE WORKING GROUP
MOST EFFECTIVELY SO WE'RE
CONTINUING TO REFINE THESE
MEASURES FOR THE OTHER
CATEGORIES AND WE'LL BE
CONTINUING TO REVIEW THESE WITH
THE WORKING GROUP.
SO AS A WIND DOWN THIS
PRESENTATION, I'LL JUST SAY
WE'LL BE REALLY GRATEFUL IF
BOARD OF REGENTS MEMBERS WOULD
HELP US SPREAD THE WORD ABOUT
THE CGR PROJECT.
PLEASE LET YOUR CONNECTIONS
INVOLVED IN AREAS THAT MAY BE
RELEVANT KNOW ABOUT AN UPCOMING
LISTENING SESSION IN WHICH THEY
CAN PROVIDE FEEDBACK ABOUT THE
RESOURCES THEY CURRENTLY USE FOR
COMPARATIVE GENOMICS RESEARCH
AND AREAS WHERE WE CAN MAKE
THINGS BETTER.
YOU CAN ALSO CHECK OUT OUR
WEBSITE TO LEARN MORE ABOUT
TOOLS WE'VE ALREADY MADE PUBLIC
AS WELL AS SIGN UP FOR THE
MAILING LIST TO STAY ABREAST OF
NEW DEVELOPMENTS, AND FINALLY,
IF YOU WOULD LIKE ANY MATERIALS
TO SUPPORT COMMUNICATIONS ABOUT
CGR, PLEASE CONTACT US AT THE
FOLLOWING ADDRESS.
IN SUMMARY I'D LIKE TO LEAVE YOU
WITH THE FOLLOWING TAKE-HOME
POINTS.
FIRST, WE HAVE A WELL THOUGHT
OUT STRATEGY TO GUIDE OUR CGR
ENGAGEMENTS.
SECOND, THAT OUR ENGAGEMENTS ARE
UNDERWAY ALREADY IMPACTING THE
DEVELOPMENT OF THE CGR PROJECT.
THIRD, WE'RE ESTABLISHING
MEASURES THAT ALLOW US TO ASSESS
AND REFINE OUR ENGAGEMENTS AND
OPTIMIZING THEM WE HAVE THE BEST
HOPE TO MAKE CGR TRULY USEFUL TO
THE COMMUNITY.
AND THIRDLY, THAT THE BOARD OF
REGENTS CGR WORKING GROUP PLAYS
A KEY ROLE IN THIS AND WE'RE
SUPPORTING THEM AND WE ALSO
WELCOME YOUR PARTICIPATION.
IN THIS PROCESS, ACTUALLY AS
ANOTHER CHAMPION.
SO THANK YOU.
I'M HAPPY TO TAKE ANY QUESTIONS.
I KNOW WE HAVE A DISCUSSION.
>> YES.
THANK YOU, VALERIE.
THAT WAS A GREAT PRESENTATION.
I THINK I'M GOING TO TURN TO
KRISTI FIRST TO ASK -- I KNOW
SHE HAS SOME THOUGHTS AND
QUESTIONS.
>> SURE.
THANK YOU.
SO FIRST OFF, THANK YOU,
VALERIE, FOR SHARING THE
PROJECT.
IT'S AN INCREDIBLE NOT ONLY
ACCOMPLISHMENT WITH THE
TECHNICAL AND DATA ASPECTS THAT
I THINK ALSO REALLY REACHING OUT
AND PARTNERING WITH THE VARIOUS
MODEL ORGANISM COMMUNITIES AND
ALL OF THE OTHER INTERESTED
STAKEHOLDERS.
SO ANYWAY, THANK YOU VERY MUCH.
THIS HAS BEEN A GREAT
DISCUSSION.
SO I WOULD LIKE TO, I GUESS,
START OUR QUESTION SESSION OFF
WITH AN INITIAL QUESTION, WHICH
IS, WE'VE TALKED A LOT ABOUT HOW
WE'RE ENGAGING THE COMMUNITY,
BUT THERE'S A TREMENDOUS AMOUNT
OF PLANNING THAT'S REQUIRED FOR
SUCH AN ARDUOUS PROJECT, AND SO
I WONDER IF YOU CAN TELL US A
LITTLE BIT ABOUT HOW YOU BALANCE
THAT FEEDBACK THAT YOU GET FROM
THE COMMUNITY WITH WHAT'S ON THE
ROAD MAP AND HOW YOU CARRY THAT
WORK FORWARD.
>> THANKS.
THAT'S A GREAT QUESTION.
SO I'LL MENTION THAT WE'RE USING
A CONTINUOUS ITERATIVE CYCLE FOR
THE PROJECT, AND AS WELL AS OUR
ENGAGEMENT SO FOR THOSE WHO ARE
FAMILIAR WITH THE AGILE PROCESS
AND DEVELOPMENT METHODS, THAT'S
WHAT WE'RE APPLYING TO CGR.
WHAT THIS MEANS IS THAT WE ARE
DELIVERING IN INCREMENTS
CONSISTENTLY REVIEWING OUR
DELIVERIES WITH THE COMMUNITY,
AND THEN TAKING THAT FEEDBACK.
SO BECAUSE WE HAVE ENGAGEMENTS
WITH THE COMMUNITY BUILT IN TO
OUR PROCESS, IT ALLOWS US TO
PIVOT MORE QUICKLY ON WHAT WE'RE
DOING SO WE WILL BUILD SOMETHING
OUT QUICKLY, GET TO THE
COMMUNITY AND SAY, HEY, WE HEARD
FROM YOU EARLY ON THAT THIS IS
THE TYPE OF RESOURCE OR TOOL
THAT YOU MIGHT NEED TO WORK IN
COMPARATIVE GENOMICS.
A GREAT EXAMPLE IS OUR
COMPARATIVE GENOME VIEWER.
WE DID SOME ADDITIONAL RESEARCH
TO FIND OUT WHAT SORT OF TOOLS
EXISTED IN THE ENVIRONMENT AND
WHERE WE MIGHT GO WITH IT SO WE
BUILT A VIEWER AND GOT IT OUT
THERE TO THE PUBLIC AND SAID,
HEY, TELL US A LITTLE BIT MORE
ABOUT WHAT YOU'VE SEEN.
SO THAT FEEDBACK SAID WE LOVE
WHAT WE SEE SO FAR, BUT WE WISH
WE COULD DO GENE SEARCH IN
THERE.
SO WE CAN NOW GO BACK AND START
ADDING THAT IN AS OPPOSED TO
HAVING GONE ALL THE WAY DOWN THE
ROAD AND BUILT A VIEWER THAT
MAYBE HAD 10,000 BELLS AND
WHISTLE BUT WAS MISSING GENE
SEARCH.
SO I THINK THE APPROACH WE'RE
TAKING ALLOWS US TO PIVOT
QUICKLY AND IF WE LEARN
SOMETHING THAT EARLY RESEARCH
SUGGESTED WAS VALUE BUT ISN'T
TURNING OUT TO BE SO, WE CAN
SHIFT AWAY.
LOGISTICALLY, I WILL SAY THIS IS
A BIG CHALLENGE, ESPECIALLY IN
THE SPACE OF THE ENGAGEMENTS
THEMSELVES, BECAUSE THE
COMPARATIVE GENOMICS RESEARCH
COMMUNITY IS HUGE.
WE HAD NINE DIFFERENT PERSONAS
OUT THERE.
IT GOES EVERYWHERE FROM
RESEARCHERS TO MEDICAL
LIBRARIANS TO PHYSICIANS TO
STUDENTS TO ALL KINDS OF THINGS,
AND WHILE WE COULD SORT OF VERY
QUICKLY SEND OUT A BUNCH OF
COMMUNICATIONS LIKE HEY, NCBI IS
BUILDING THE CGR, THAT ISN'T
EFFECTIVE BECAUSE WE DON'T
TARGET THEM AND IT ALSO IS A
LOGISTICAL ISSUE BECAUSE THE
COMMUNITY IS BIGGER THAN WE ARE
AT NCBI.
SO IF WE START GETTING LOTS OF
FEEDBACK ALL AT ONCE, WE MIGHT
BE PERCEIVED AS NOT BEING
RESPONSIVE TO THAT FEEDBACK
BECAUSE WE'RE TRYING TO WORK
THROUGH IT.
SO THAT'S WHY THE STRATEGY IS
REALLY CRITICAL TO HELP US METE
THAT OUT AND LOGISTICALLY WE'RE
DOING THINGS BY TRACKING OUR
WORK, BOTH INTERNAL AT NCBI AND
AS WELL AS FOR THE WORKING
GROUP, WE'VE CREATED TRACKER
THRAS FOLKS CAN REPORT IN THEIR
ACTIVITIES, WHERE THEY ARE IN
THE PROCESS, WHAT FOLLOW-UPS ARE
NEEDED.
FOR THE WORKING GROUP MEMBER,
WE'VE ESTABLISHED A TEAMS
CHANNEL FOR THEM WHERE THEY CAN
EASILY FIND ACCESS TO THE LATEST
MATERIALS THAT WE HAVE
AVAILABLE, SUCH AS TALKING
POINTS -- DECKS AND ALL OF THAT.
SO REALLY, IT'S REALLY BY HAVING
PROCESSES, STANDARDIZED
OPERATING PROCEDURES SUCH AS
THAT PROCESS I WALKED YOU
THROUGH ON THE EARLIER SLIDE
THAT HELP US MANAGE THIS.
SO WHILE IT SEEMS LIKE A LOT OF
WORK UP FRONT AND IT CAN SEEM
LIKE WHY ALL THIS EFFORT, THE
BENEFIT OF THIS IS BY HAVING
THAT STRUCTURE, IT ALLOWS US TO
BE FOCUSED ON WHO WE'RE TALKING
TO AND I THINK MOST IMPORTANTLY
RESPONSIVE TO THOSE GROUPS IN A
TIMELY FASHION AND IN THE RIGHT
WAY.
>> GREAT.
THANK YOU.
HEIDI, DID YOU HAVE A QUESTION?
>> SO ONE THING I ALWAYS FIND
HELPFUL AND I'VE FORGOTTEN
EXACTLY HOW THIS FALLS INTO
PLACE, BUT COMPARING THIS
PROJECT WITH ANY THAT ARE
ALREADY IN EXISTENCE IN THE
COMMUNITY AND SORT OF BALANCING
TRYING TO ENHANCE OTHER PRODUCTS
VERSUS BUILD A NEW ONE.
AND SO JUST -- LIKE FOR
INSTANCE, FOR ME I'M VERY HUMAN
CENTRIC IN TERMS OF MY OWN WORK,
SO I TEND TO GO TO THE UCSC
BROWSER WHEN I WANT TO SEE
COMPARATIVE INFORMATION AROUND
OTHER SPECIES, SO HOW DO YOU
ENGAGE SOMEONE AND SAY WHAT DO
YOU LIKE OVER THERE, WHAT WOULD
YOU LIKE TO SEE HERE, AND HOW
ARE YOU GOING TO USE ONE VERSUS
THE OTHER?
THOSE KINDS OF THINGS.
AND ALSO THERE WAS A LOT OF --
AND I ACTUALLY DON'T KNOW THE
ANSWER TO THIS QUESTION, BUT
WORM BASED, FLY BASED, THIS
OTHER ORGANISM-SPECIFIC
DATABASES, AND I KNOW THERE'S
BEEN DECREASED FUNDING OF THOSE
OVER TIME, WHAT'S THE EVOLUTION
OF THOSE RESOURCES COMPARED TO
CGR AND HOW THESE THINGS WILL
EVOLVE.
>> THOSE ARE BOTH GREAT
QUESTIONS.
I'LL TACKLE THE -- MAYBE THE
FIRST FROM A LITTLE BIT IN TERMS
OF UNDERSTANDING WHAT RESOURCES
PEOPLE USE IN THE COMMUNITY AS
WELL AS CONNECTING WITH THOSE
THINGS LIKE THE SU. UCSC BROW.
THE LISTENING SESSIONS REALLY
INTENDED TO BE ONE AREA IN WHICH
WE DO THAT.
LISTENING SESSIONS, THE NAME MAY
IMPLY THAT THE COMMUNITY IS
LISTENING TO US BUT IT'S REALLY
THE OTHER WAY AROUND.
THESE ARE SMALL GROUP
DISCUSSIONS THAT ARE GUIDED BY A
FEW PRINCIPLES THAT BASICALLY
ASK WHAT ARE YOU USING?
WHAT'S WORKING, WHAT'S NOT, HOW
WOULD YOU LIKE TO SEE THAT WORK
WITH THINGS THAT YOU DO AT NCBI.
SO WE'RE LISTENING TO THE
COMMUNITY IN THAT SPACE AND
FEEDING THAT BACK IN.
IN TERMS OF CONNECTING TO OTHER
RESOURCES, THE UCSC BROWSER IS A
GREAT EXAMPLE.
SO THIS IS A GROUP THAT NCBI HAS
LONG HAD A WORKING RELATIONSHIP
WITH, THEY CONSUME INFORMATION
FROM US, AND SO WE'RE NOW REALLY
POISED TO GO BACK TO THEM AND
TALK ABOUT HOW DO WE GROW THAT
RELATIONSHIP IN THE CONTEXT OF
CGR, FOR EXAMPLE, WE KNOW THAT
USERS OUT THERE DON'T JUST LOOK
AT ONE BROWSER, THEY LOOK AT
MANY.
THEY LIKE HAVING A DIVERSE
NUMBER OF RESOURCES BECAUSE
EVERYONE TELLS THEM SOMETHING A
LITTLE BIT DIFFERENT IN THAT
SPIRIT OF SIGN TIIVE
INVESTIGATION, -- OFC
INVESTIGATION.
I WANT TO THINK CRITICALLY ABOUT
WHAT I'M SEEING AND MAKE
DECISIONS.
SO I THINK AS WE PURSUE WITH
THEM, THEY RECENTLY DEVELOPED
THE GENOME ARC WHICH PROVIDES
VIEWERS FOR A NUMBER OF
RESOURCES, HOW WE MAKE ACCESS TO
THAT SEAMLESS FROM A USER WHO
MIGHT BE AT NCBI LOOKING AT THE
RECORD FOR A PARTICULAR GENOME.
SO THEY'VE ALREADY REACHED OUT
TO US ACTUALLY IN THAT SPACE AND
WE'LL BE FOLLOWING UP WITH THEM.
WITH REGARD TO THE QUESTION
ABOUT ALL OF THE OTHER MODEL
ORGANISM DATABASES OUT THERE, SO
THE ALLIANCE OF GENOME RESOURCES
IS AN UMBRELLA ORGANIZATION THAT
COVERS ABOUT SIX OF THOSE, IT
COVERS MOUSE, FLY, WORM, YEAST
AND A FEW OTHERS.
AND SO VIEW PATH DB IS THE MODEL
ORGANISM DATABASE THAT COVERS
INSECTS AND MICROBIAL EUKARYOTES
THAT ARE ESSENTIALLY VECTORS OF
HUMAN DISEASE.
SO BY BEING ENGAGED WITH BOTH OF
THOSE GROUPS, WE DO HAVE THOSE
PARTNERS IN THE COMMUNITY TO
TALK ABOUT WHAT DOES THAT
LANDSCAPE LOOK LIKE GOING
FORWARD.
NIH FUNDS ALL OF THESE THINGS,
SO THE DECISION ABOUT WHERE ALL
THIS GOES IS NIH'S, BUT I THINK
IT'S THROUGH OUR PARTNERSHIP IN
TALKING TO THEM, LIKE WE NOW
MEET EVERY OTHER MONTH WITH THE
ALLIANCE OF GENOME RESOURCES,
WITH UPAF, THERE ARE SPECIFIC
DATA EXCHANGE ACTIVITIES WE'RE
INVOLVED WITH, WE'RE ALSO
SETTING UP MEETINGS FOR THEM
REGULARLY.
WE TALK ABOUT THOSE AREAS WHERE
NCBI OFFERS THE MOST BENEFIT
THROO ITS TOOLS AND THEIRS, AND
IT'S NOT AN I SCRATCH YOUR BACK,
YOU SCRATCH MINE BUT
UNDERSTANDING HOW WE CAN EACH I
THINK SORT OF AMPLIFY THE
STRENGTHS THAT WE EACH CARRY.
THAT'S GOING TO BE A BIG PART OF
THE CONVERSATION GOING FORWARD.
>> THANKS, VALERIE.
ANDY.
>> THANKS A LOT, VALLEY.
VALERIE.
THIS IS TERRIFIC.
I'M A BIG FAN.
I THINK MODEL ORGANISMS PLAY A
KEY ROLE AND WILL CONTINUE TO DO
SO.
THIS IS A REAL MOVING TARGET AS
WE GET BETTER AND BETTER QUALITY
GENOMES, COMING ONLINE ARE JUST
AMAZING IMPROVEMENT OF THE SORT
OF QUALITY OF GENOME ASSEMBLIES
AND EVEN GENE ANNOTATION.
I'M WONDERING HOW YOU'LL
REPRESENT THE SORT OF OVERALL
DATA QUALITY AND AS NEW GENE
ANNOTATIONS COME ONLINE, IS
THERE A CONTINUOUS UPDATING?
HOW IS IT SORT OF KEPT SORT OF
UP WITH THE LATEST?
>> THAT'S A GREAT QUESTION AS
WELL.
THE RECENT ADVANCES IN
SEQUENCING AND ASSEMBLY HAVE
GIVEN US MORE GENOMES THAT ARE
MORE CONTIGUOUS AND MORE
COMPLETE THAN EVER, BUT ONE OF
THE THINGS WE LEARNED BY LOOKING
AT THE DATA THAT COMES IN TO
GENBANK IS THAT EVEN AS RECENTLY
AS 2021, MORE THAN HALF OF THE
GENOMES GETTING SUBMITTED ARE
CONTAMINATED WITH FOREIGN --
THERE'S A PROCESS THAT RUNS
INTERNALLY TO DO THIS, BUT IT
REALLY KIND OF SLOWS DOWN THE
WHOLE DELIVERY OF THAT DATA TO
THE PUBLIC BECAUSE WE HAVE TO GO
BACK TO THE SUBMITTERS AND GET
CLEANED UP SO ONE OF THE BIG
THINGS WE'RE DOING AS PART OF
CGR IS PUTTING CONTAMINATION
SCREENING TOOLS INTO THE HANDS
OF THE PUBLIC, WE'VE DEVELOPED
AN ENTIRELY NEW ONE WITH THE NEW
ALGORITHM THAT'S NOW AVAILABLE
ON GITHUB FOR FOLKS TO TRY AND
WE'VE BEEN PARTNERED WITH GROUPS
LIKE THE VERTEBRATE GENOME
PROJECTS AND OTHERS TO TEST THIS
OUT AND USE IT.
SO THAT'S ONE OF THE AREAS IN
WHICH WE'RE HELPING IMPLOF THE
QUALITY OF IMPROVE TE
QUALITY OF THE DATA THAT COMES
IN BUT ONCE IT'S HERE, HOW DO
USERS KNOW WHAT'S GOOD AND
WHAT'S NOT.
WE'VE RECENTLY REDESIGNED OUR
GENOME RECORD PAGES AND WE SHOW
THERE SOME OF THE KEY METADATA
ABOUT THE ASSEMBLIES IN TERMS OF
CON NEWT,
CONTINUITY, LENGTH, THINGS LIKE
THAT.
YOU CAN ACTUALLY ACCESS THAT NOT
JUST FOR INDIVIDUAL SPECIES BUT
YOU CAN SAY I WANT TO EASILY
ACCESS ALL THE RECORDS FOR
GENOMES THAT FALL UNDER A
PARTICULAR GENUS OR HIGHER GROUP
THAT CAN EASILY NAVIGATE FROM
ONE TO THE OTHER TO SEE HOW THEY
COMPARE AND DOWNLOAD ALL OF THAT
DATA IN A SINGLE DATA PACKAGE
THAT ALLOWS YOU TO DO THOSE
COMPARISONS PROGRAMMATICALLY.
THE OTHER PART OF YOUR QUESTION
HERE WITH REGARDS TO THE
ANNOTATIONS, THAT'S AN AREA
WHICH WE'RE ALSO REALLY -- WE'RE
DOING WORK INTERNALLY BUT
WORKING WITH THE COMMUNITY IN
THE SPACE AS WELL.
FOR A LONG TIME, , NCBI HAS DONE
ANNOTATION OF A SUBSET OF
GENOMES USING A PIPELINE HERE.
AND MORE THAN HALF OF THE
ANNOTATIONS WE DO ARE AT THE
REQUEST OF THE COMMUNITY SO
WE'RE NOW ACTIVELY WORKING TO
MAKE THAT A CLOUD-BASED TOOL
THAT WE CAN PUT INTO THE HANDS
OF THE PUBLIC SO THAT THEY CAN
USE.
BUT MORE THAN THAT, WE'RE ALSO
LOOKING TO GROW THE TAXONOMIC
BREADTH THAT'S SUITABLE FOR THAT
AND WE'RE WORKING -- TO FIGURE
OUT HOW WELL THAT TOOL MIGHT
WORK FOR SPECIES SUCH AS FUNGI,
AND IF THAT'S NOT THE RIGHT TOOL
WHAT IS BEING USED BY THE
COMMUNITY.
SO THIS IS WHERE BEING INVOLVED
WITH THESE OTHER DATABASES AS
ENABLERS AND LEARN FROM THEM
ABOUT WHAT ARE THE THINGS THAT
WE NEED TO MAKE THIS TOOL WORK
OR DO YOU HAVE TOOLS THAT ON
THEIR OWN MIGHT NOT BE SUITABLE
FOR PRODUCTION LEVEL FOR DEALING
WITH THOUSANDS OF GENOMES, BUT
WE COULD LEVERAGE ON THAT SPACE.
>> ONE OTHER QUESTION I HAVE I
JUST REMINDED MYSELF ABOUT AND
THIS MAYBE MAY NOT BE AS
RELEVANT FOR CGR BUT OTHER
RESOURCES THAT NCBI SUPPORTS
WHICH IS HAS NCBI OR NLM APPLIED
FOR THE GLOBAL CORE BIODATA
RESOURCE SELECTION PROCESS FOR
ANY OF ITS RESOURCES?
>> IS KIM PRUITT ON OR STEVE
SHERRY ON?
>> STEVE IS ON.
>> STEVE, DO YOU WANT TO TAKE
THIS ONE?
>> WE'RE AWARE OF IT, HEIDI.
THERE ARE SOME RESERVATIONS WE
HAVE ABOUT APPLYING FOR THIS
BECAUSE OF THE INFORMATION
THAT'S REQUIRED IN THE
APPLICATION, IT'S A LOT OF
DETAILED INFORMATION WE
TYPICALLY DON'T DISCLOSE AROUND
OFFERINGS.
WE HAVE SOME MEETINGS SET UP
WITH A GUY ABOUT -- THE
LEADERSHIP ABOUT ACCOMMODATIONS
FOR OUR DATA RELEASE
RESTRICTIONS ON COSTS,
USABILITY, THERE'S A
LONG-STANDING NLM POLICY AND
PROCEDURE, PRINCIPLE, THAT WE
DON'T SHARE GRANULAR USAGE
INFORMATION AT THE LEVEL THEY
WERE REQUESTING IT.
I THINK WE'VE PUT OUR EMPHASIS
FOR VALUE IN CORE TRUST, WHICH
IS A DIFFERENT ALTERNATIVE
REPOSITORY BASED CERTIFICATION
OF QUALITY AROUND OPERATIONS,
RELIABILITY, HAVING BEST
PRACTICES FOR ACCURACY,
FIDELITY -- EXCUSE ME -- AND IT
GETS INTO THE SPIRIT MORE OF
WHAT IS A PROPERLY AND WELL
TUNED OPERATION IN TERMS OF
LEADING PRINCIPLES OF
MANAGEMENT, SCIENTIFIC CURATION
AND SERVICE, SO I THINK THEY'RE
COMPLEMENTARY.
WE'RE STILL OPEN TO, LIKE I
SAID, THE GLOBAL BIO CORE
ENTERPRISE, BUT TRYING TO WORK
OUT WHAT IS THE RIGHT
RELATIONSHIP, I GUESS I WOULD
SAY FOR US TO HAVE.
>> EXCUSE ME, HEIDI AND STEVE,
I'M GOING TO HAVE TO INTERRUPT
HERE BECAUSE WE HAVE A BREAK AND
OUR NEXT SPEAKER IS COMING IN
ABOUT 13 MINUTES.
SO THIS IS REALLY AN IMPORTANT
TOPIC AND IF YOU'D LIKE, WE CAN
ADD IT IN TO THE AGENDA LATER,
BUTTS BU IT'S
BUT IT'S REALLY ONE WE'RE NOT
PREPARED TO GO INTO MUCH DETAIL
TODAY.
>> I THINK THAT WOULD BE GREAT,
PATTI, AT THE NEXT BOARD
MEETING, BECAUSE THE CYCLE HAS
ENDED, IF YOU DIDN'T APPLY, IT
WON'T BE UNTIL WHO KNOWS WHEN,
BUT I DO THINK IT'S A REALLY
IMPORTANT TOPIC, SO IF WE COULD
PUT THAT ON THE AGENDA.
>> WE'VE HAD MANY DISCUSSIONS
ABOUT IT WITH NIH LEADERSHIP AND
ACROSS THE NLM.
SO THANKS FOR BRINGING IT UP.
>> GREAT.
ALL RIGHT.
AS PATTI MENTIONED, IT IS TIME
FOR OUR BREAK, AND SO WE WILL
RECONVENE AT 2:45 FOR OUR NEXT
SPEAKER.
THANKS, EVERYONE.
>> THANKS, EVERYONE.
SO I THINK WE'RE GOING TO GET
STARTED AGAIN.
IT'S A GREAT PLEASURE TO
INTRODUCE OUR SPEAKER, DR. NIGAM
SHAH.
WHO IS PROFESSOR OF MEDICINE,
MEDICAL INFORMATICS RESEARCH AND
STANFORD UNIVERSITY AND SERVES
AS THE CHIEF DATA SCIENTIST FOR
STANFORD HEALTHCARE.
DR. SHAH'S RESEARCH GROUP
ANALYZING MULTIPLE TYPES OF
HEALTH DATA INCLUDING EHR
CLAIMS, WEARABLES, PATIENT
BLOGS, TO ANSWER CLINICAL
QUESTIONS, GENERATE INSIGHT AND
BUILD PREDICTIVE MODELS FOR THE
LEARNING SYSTEM.
HE'S AUTHORED OVER 200
SCIENTIFIC PUBLICATIONS AND HAS
COFOUNDED THREE COMPANIES.
HE HAS AN M B.S. DEGREE, PH.D.
AND COMPLETED HIS POSTDOCTORAL
TRAINING AT STANFORD UNIVERSITY.
USING AGGREGATE PATIENT DATA AT
THE BEDSIDE VIA AN ON DEMAND
CONSULTATION SERVICE.
WELCOME, DR. SHAH.
>> THANK YOU, THANK YOU.
CAN YOU HEAR ME OKAY?
>> YES.
>> PLEASE CALL ME N IGA M.
IT'S AN ABSOLUTE PLEASURE TO BE
HERE.
WITHOUT FURTHER ADO, I'LL GET
STARTED.
FEEL FREE TO ASK QUESTIONS ALONG
THE WAY.
THAT'S THE TITLE.
I WANT TO START WITH
ACKNOWLEDGMENTINGS
ACKNOWLEDGMENTS THAT THIS
PROJECT WOULDN'T HAVE HAPPENED
WITHOUT OF COURSE THE NLM
FUNDING WHICH IS LISTED FIRST IN
THE FUNDING LINE, WHICH THEN
SORT OF VALIDATED THE IDEA SO
OTHER PEOPLE PILED ON, INCLUDING
MEMBERS OF OUR HEALTHCARE
SYSTEM, PROFESSORS IN
CARDIOLOGY, IN STATISTICS, AND A
VERY GOOD TEAM CAME TOGETHER TO
MAKE POSSIBLE THAT I'M GOING TO
TALK TO YOU TODAY, DEFINITELY
NOT JUST MY WORK, SO TO SPEAK,
HENCE I WANT TO START WITH THIS
BROAD TEAM THAT MADE THIS ALL
POSSIBLE.
>> ARE YOU TINING INTENDINGE
SLIDES AT THIS POINT?
I JUST WANT TO MAKE SURE WE HAVE
THEM UP.
>> I THINK NOW THEY SHOULD BE
SHOWING?
>> WE CAN SEE THEM NOW.
>> THAT WAS THE TEAM I WAS
RAMBLING ABOUT.
SORRY ABOUT THAT.
IT HAS TO HAPPEN ONCE IN A ZOOM
SESSION, RIGHT?
SO NLM SORT OF SAW THE
POTENTIAL, FUNDED THIS AWARD
ACTUALLY 5 1/2 YEARS AGO NOW,
ONE YEAR OF EXTENSION IN BETWEEN
AND MADE ALL OF THIS POSSIBLE.
ALL RIGHT.
SO I'M GOING TO START WITH ONE
SLIDE OF PRIOR EFFORTS.
GOING BACK REALLY INTO THE
1970s.
SO THIS WAS THE FIRST EFFORT I
FOUND WHERE SOMEONE ATTEMPTED TO
USE A COMPUTER PROGRAM ON A
LIBRARY OF PATIENTS TO ESTIMATE
PROGNOSIS.
DR. FEINSTEIN, FAMOUS DOCTOR,
THIS IS THE YALE UNIVERSITY AND
NEW HAVEN VA WHERE THIS
HAPPENED.
THE SECOND BIG ONE WAS AT DUKE.
THEY ACTUALLY PRODUCED THESE
REPORTS CALLED PROGOSTOGRAMS,
THEY'RE TABULATING HOW MANY
LIVED FOR HOW LONG ON MEDICAL
TREATMENT VERSUS SURGICAL
TREATMENT.
AGAIN, THIS WAS MID 70s, THE
PAPER IS FROM 1975, AND THEN THE
THIRD ONE IS FROM OUR CAMPUS,
RIGHT AROUND THE TIME WHEN I
JOINED THE FACULTY, THAT CAME
OUT IN THE NEW ENGLAND JOURNAL.
THE POINT OF SHOWING THIS SLIDE
IS THE IDEA OF USING AGGREGATE
PATIENT DATA AT THE BEDSIDE HAS
BEEN IN THE MEDICAL
CONSCIOUSNESS SINCE THE 70s.
AND IT'S ABOUT 50 YEARS LATER
THAT WE ACTUALLY ARE ABLE TO DO
IT ON A ROUTINE SYSTEMATIC
BASES, SO I JUST WANT TO TRACE
BACK TO THIS RICH HISTORY THAT
BRINGS US HERE.
SO WHEN I JOINED THE FACULTY,
THIS THIRD PROJECT,
EVIDENCE-BASED MEDICINE HAD JUST
HIT THE JOURNALS AND MADE A LOT
OF NOISE ON OUR CAMPUS BECAUSE A
RESEARCHER, IN THAT CASE,
JENNIFER FRANKOVICH, WAS SEEING
A PATIENT, A TEENAGER WITH
SYSTEMIC LUPUS, THE THING SHE
WAS TASKED WITH DECIDING IS
SHOULD THEY USE ANTI-COAGULATION
OR NOT ON A TEENAGER.
SHE DID A SHOCKING THING OF
SEARCHING OUR DATA WAREHOUSE,
FINDING 98 PATIENTS AND FINDING
THAT TO BASE HER DECISION, AND
GOT INTO TROUBLE WITH IRB,
COMPLIANCE, SECURITY, PRIVACY,
LEGAL, THE DEAN'S OFFICE,
EVERYBODY.
WITHIN A SPAN OF 24 HOURS,
EVERYBODY THOUGHT ABOUT THIS AND
SAID, ISN'T THIS WOULD WE WOULD
LIKE TO DO ON A ROUTINE BASIS,
THAT LEARNS FROM PAST PATIENT
EXPERIENCE?
SO OTHER THAN THE IRB WHICH GAVE
HER A SLAP ON THE WRIST,
EVERYBODY ELSE SAID, YEAH, THIS
IS WORTH DOING.
THAT'S WHEN I JOINED THE
FACULTY, SO FRESH IN MY MIND.
WHEN WE LOOKED AT IT FROM AN
INFORMATICS LENS WHAT YOU HAVE
GOING ON IS YOU HAVE THIS SET OF
PATIENTS, SOME PEDIATRIC, SOME
HAVE SLE, SOME HAVE PROTEINURIA,
AND FINDING THIS COHORT OF
PEDIATRIC PATIENTS THAT HAD SLE,
THAT HAD SLE ANTIPROTEINURIA AND
PHOSPHOLIPID ANTIBODY, AND THEN
SOME OF THEM DEVELOPED THIS RED
DOT, WHICH IS THE BLOOD CLOT IN
BOTH SIDES.
AND THEN WE TRIED TO ESTIMATE
THE RISK FACTORS FOR THIS,
THERE'S LITTLE TINY DOTS HERE.
AND THE FACTORS THAT ASSOCIATE
WITH OR WITHOUT HAVING THAT
PARTICULAR OUTCOME.
THAT'S THE CRUX OF THE
OPERATIONS THAT WE'RE DOING.
BEHIND THE XENOS, SCENES THS
OPERATION TIMELINE.
IT HAS EVENTS ARRAYED OVER TIME,
SOME OF IT OPERATIONAL LIKE
STAYING IN THE ICU, GETTING A
WAVE FORM RECORDED, SOME OF THEM
LONGITUDINAL, SOME VITAL SIGN
MEASUREMENTS ALONG THE WAY, SOME
CODE ASSIGNMENTS AND SO ON, SO
THIS IS SORT OF A FICTIONAL
PATIENT JOURNEY, NOT TOO
OUTRAGEOUS, YOU'D SEE THIS IN
MANY DATASETS.
BUT WE DO SET OPERATIONS ON TIME
LINES.
WHICH IS REALLY HARD, AND THAT'S
WHAT LEADS TO THIS DIFFICULTY,
WHR WE
WE END UP SENDING TWO TO FOUR
WEEKS, DOING THE ANALYSIS AND
WRITING A PAPER ON IT.
WE HAVE THE EHR, A NOT TOO
HIDEOUS LOOKING INTERFACE.
BEHIND THE SCENES IS THIS
TIMELINE OBJECT, WE HAVE THAT ON
MILLIONS OF PEOPLE.
AND WE'RE TRYING TO DO SOME
OPERATIONS TO GET THIS MATRIX,
PATIENTS, FEATURES, AND THIS
SPECIFIC TIME AXIS, WE FLATTEN
IT OUT, THEN WE MAKE THE
DECISIONS OF WHETHER TO TREAT OR
HOW TO TREAT.
IN THAT EXAMPLE I WAS SHOWING,
IF THE RISK OF A BLOOD CLOT IS
HIGH ENOUGH, AND HIGH BEING A
SUBJECTIVE THRESHOLD, THAT
DECIDES WE SHOULD TREAT AND THEN
HOW TO TREAT, IN THAT CASE, WE
WOULD USE ANTICOAGULANT THERAPY,
LOW DOSE HEPARIN OR SOMETHING
LIKE THAT.
SO THAT'S WHERE THE ESSENCE OF
THE PROBLEM IS, SEARCHING TIME
LINES TO DEFINE PHENOTYPES AND
BUILD COHORTS, AND WE TOOK ON
FEATURED ENGINEERING,
PHENOTYPING AND FINDING MATCHING
PATIENTS, THREE THINGS IN ONE
SHOT, AND THE REVIEWERS WERE
SORT OF KIND ENOUGH TO BELIEVE
ME AT FACE VALUE AND FUND THE
PROPOSAL.
SO NOW I'M GOING TO TELL YOU THE
END, THEN WE'LL SORT OF DO A
FLASHBACK ON HOW WE GOT -- HOW
WE DID THE PROJECT.
HERE'S THE PUNCH LINE.
SO THE PROJECT GOES BY TWO
NAMES.
THERE'S THE GREEN BUTTON PROJECT
AND THE INFORMATICS CONSULTATION
SERVICE.
GREEN BUTTON IS THE IDEA, AND
THE CONSULTATION SERVICE IS THE
EXECUTION OF THAT IDEA ON OUR
CAMPUS.
REDUCTION TO PRACTICE.
AND GIVEN A SPECIFIC CASE, WE
PROVIDE A SUMMARY OF SIMILAR
PATIENTS IN STANFORD'S DATA
WAREHOUSE, THE COMMON TREATMENT
CHOICES MADE AND THE OBSERVED
OUTCOMES.
SO IRB APPROVED PROJECT, WE
SERVED 100 CONSULTATIONS ACROSS
ALL SERVICE LINES.
SO THE FINAL PAPER ON THIS CAME
OUT IN THE NEW ENGLAND JOURNAL
IN OCTOBER 2021, WHERE WE
SUMMARIZED THE 100 CONSULTATIONS
AND ALONG THE WAY, WE HAVE A
LISTSERV OF 39 PUBLICATIONS
ATTRIBUTED TO THIS GRANT, AND
WHAT WE'RE SEEING ON THE RIGHT
IS A PLOT OF THE UNIQUE DOCTORS,
PHYSICIANS, WHO REQUESTED A
CONSULTATION ON THE X AXIS, THE
Y AXIS, THE NUMBER OF
CONSULTATIONS THAT THEY
REQUESTED, SERVICE LINES ARE
ENCODED BY THE COLOR OF THE
BUBBLE AND IT'S SIZED ACCORDING
TO THE NUMBER OF CONSULTATIONS.
I'M IN INTERNAL MEDICINE
DEPARTMENT SO NATURALLY THAT WAS
THE LARGEST SOURCE OF REQUEST,
BUT WE DID AT LEAST ONE FROM
EVERY SPECIALTY.
IF IN THE FIRST 100, 17, WE COUD
NOT DO BECAUSE SOME DATA WERE
MISSING, SOME LABORATORY TEST
RESULTS WERE IN A FORMAT WE
COULDN'T PROCESS OR IT WAS A
DISCHARGE SERVICE WE COULDN'T
HANDLE IN THE DATA TIMELINE OR
TOO FEW PATIENTS IN ABOUT FIVE
CASES.
WE COMPLETED 83, AND 48 WERE
ANALYSES OR SUMMARIZING RATES.
THAT WAS THE BIGGEST SURPRISE TO
US.
WE THOUGHT PEOPLE WOULD BE
ASKING COMPARISON QUESTIONS, A
VERSUS B, YOU BUT THAT WAS THE
MINORITY, THAT WAS 35.
17 WERE TRYING TO -- 18 WERE
BINARY OUTCOMES, BUT THE
MAJORITY WERE JUST -- SUMMARIZE
THE COULD HE HORT FOR .
THAT IS AWESOME BECAUSE THAT CAN
BE DONE VERY RELIABLY.
THIS SLIDE IS A SUMMARY OF THE
83 WE DID, AND THE ROWS WERE
WHAT WERE THE MOTIVATION?
OUT COME RATES OF CERTAIN EVENTS
ON APPROVED DRUGS AND EVALUATING
INSTITUTIONAL PATIENT MANAGEMENT
WERE THE TWO BIGGEST, 29 EACH.
THEN ASKING FOR, I GOT THIS TEST
RESULT, WHAT DOES IT MEAN, WAS
THE NEXT BIGGEST AND A FEW OTHER
REASONS THAT THEY WERE ASKING
THESE QUESTIONS.
THIS PARTICULAR WORD CHOICE
INSTEAD SUBSEQUENT ACTIONS, AT
SOME POINT I HAD USED THE WORD
OUTCOME, LED TO A NINE MONTH
DELAY AT A PRESTIGIOUS JOURNAL.
THAT'S A FUN FACTOID THAT A
REVIEWER TOOK OFFENSE AT THE
FACT THAT THESE WERE OUTCOMES IN
THE FORM OF CHANGING PATIENT
CARE, GUIDING FURTHER RESEARCH
OR FOLLOW-UP ANALYSES.
WE NOW USE THE VOCABULARY THE
SUBSEQUENT ACTION, WHAT HAPPENED
AFTER THE CONSULTATION.
AND IN 10 CASES TOTAL, WE DID
LEAN TO A DECISION THAT WOULD
NOT HAVE BEEN POSSIBLE TO MAKE
WITHOUT HAVING THE REPORT IN
HAND.
WE'RE AN ACADEMIC MEDICAL CENTER
SO FURTHER RESEARCH WA THE
MAJORITY OUTCOME.
A BUNCH OF THESE HAVE GONE ON TO
BECOME PEER REVIEWED
PUBLICATIONS IN THEIR OWN RIGHT,
AND 17 CONSULTATIONS LED TO
RETREATING THE COHORT AND DOING
FOLLOW-UP ANALYSES INDEPENDENTLY
BY THE INVESTIGATORS.
WE ALSO SURVEYED SELF-REPORTED
USER SATISFACTION.
SO WHAT I'M SHOWING YOU HERE HAS
FOUR ROWS.
THE FIRST ROW IS WOULD YOU USE
THIS AGAIN AND REFER TO A
COLLEAGUE?
AND THE OTHER THREE ARE PARTS OF
THE REPORT.
WE SHOWED A GRAPHICS TABLE, WE
WRITE AN INTERPRETATION, JUST
LIKE YOU WOULD GET FROM A
RADIOLOGY OR PATHOLOGY REPORT,
AND THEN WE ALSO OUTLINE IN TWO
PAGES A RESEARCH WALK-THROUGH AS
IN RATIONALIZING OR THINKING.
ON A 1 TO 5 SCALE, YOU CAN SEE A
MAJORITY OF IT IS BLUE, THE
LIKELIHOOD TO RECOMMEND WAS LIKE
NEAR 100%, AND THEN PEOPLE LOVE
THE RESEARCH WALK-THROUGH
ACTUALLY MORE THAN JUST OUR
INTERPRETATION.
LIKE THEY WANTED TO KNOW, WHY
ARE YOU SAYING WHAT YOU'RE
SAYING?
THEN WHEN THEY GOT THE REPORT
AFTER A FEW DAYS, WE WOULD
SURVEY THEM AND ASK THEM TO
DESCRIBE THE WHOLE EXPERIENCE IN
THREE WORDS, AND THEN THIS IS
THE TACK CLOUD MADE OUT OF THOSE
WORDS THEY USED TO DESCRIBE THE
SERVICE.
WE ALSO DID QUANTIFY THE
RELIABILITY IN A QUANTITATIVE
MATTER IN FOUR DIFFERENT WAYS.
THE SIMPLEST WAS TO HAVE
SYNTHETIC DATA, SYNTHETIC
CONTROLS, MORE LIKE A BUG CHECK
TO MAKE SURE THE CODE IS DOING
WHAT IT'S SUPPOSED TO DO.
AND THEN FOR SOME OF THE
QUESTIONS, WE COULD ALSO RESPOND
TO THEM USING TRUVEN AND OPTUM
DATASETS.
WE ASKED THEM TO WHAT RESULTS
DID THE DATA DEGREE AND
DEPENDING ON WHICH WE LOOKED AT,
68 TO 74% CONCORDANCE, ABOUT THE
SAME RATE AT WHICH RCTs AGREE
WITH EACH OTHER.
WE ALSO COMPARED PATIENT
MATCHING STRATEGIES, HIGH
DIMENSIONAL PROPENSITY SCORE
VERSUS OTHER APPROACHES, ABOUT
80% OF THE TIME WE GET THE SAME
ANSWER.
AND THEN TO GET A HANDLE ON HOW
OFTEN ARE WE WRONG, IT'S VERY
HARD TO DO THAT FOR DESCRIPTIVE
ANALYSIS WHERE WE'RE JUST
DESCRIBING SOMETHING, BUT FOR
ONES WHERE THERE WAS A
COMPARISON, WE CREATED FALSE
ASSOCIATIONS, 179
NON-ASSOCIATIONS, AND WE SAID IF
WE WERE ANSWERING THESE AS A
QUESTION, HOW OFTEN WOULD WE
HAVE SAID THAT THIS DRUG AND
THIS OUTCOME ARE ASSOCIATED, AND
THAT WOULD BE 17 TO 20% TIME.
THAT APPLIES TO THE 35 QUESTIONS
THAT WE'RE LOOKING AT SOME
OUTCOME.
THE 48 THAT WERE DESCRIPTIVE,
IT'S HARD TO EVEN HAVE A NOTION
OF WHAT WOULD COMPRISE A FALSE
POSITIVE RATE.
THEN BEHIND THE SCENES, THERE'S
SORT OF THREE MOVING PARTS.
THERE IS THE SERVICE, WHICH HAS
SOFTWARE, WHICH HANDLES THESE
PATIENT TIME LINES THAT I SHARED
WITH YOU A WHILE AGO.
THERE ARE DATA, EHR AND CLAIMS,
AND THEN PEOPLE WHO ARE STAFFING
THEIR SERVICE.
THERE'S THE SEARCH ENGINE.
IT'S PUBLISHED OPEN SOURCE
AVAILABLE FOR ACADEMIC
LICENSING.
THE SCREEN SHOT, IT LITERALLY IS
A COMMAND LINE ON THE WEB, SO TO
SPEAK.
SOMEONE HAS TO LEARN THIS
HIDEOUS SYNTAX, WHICH
AFICIONADOS LOVE BUT MOST FIND
IT NOT TOO AMUSING.
ONLY THE PEOPLE OFFERING THE
SERVICE USE THIS, AND WHAT'S
HAPPENING HERE IS, I'M DEFINING
THE FEATURE OF CRYPTOGENIC
SOURCE OR PHENOTYPES TO SO TO
SPEAK, AND I'M ASKING HOW MANY
PEOPLE HAD CRYPTOGENIC STROKE
AND WHETHER GOT DIAGNOSED WITH
ATRIAL FIBLY RANGE OF MOTION IN
ONE TO FIVE YEARS WHERE AFIB IS
DEFINED AS THE FIRST MENTION OF
THAT THING IN THEIR TIMELINE.
AND WHAT WE GET BACK IS
TIMELINES OBVIOUSLY, EACH
PATIENT HAS A TIMELINE IN THE
LOWER PANEL, SORT OF THE THING I
WAS SHOWING YOU ON THE THIRD OR
FOURTH SLIDE, THIS URL HAS A
LITTLE VIDEO DEMONSTRATING THE
CAPABILITIES OF THIS SEARCH
ENGINE.
NOW WE'RE ROLLING THIS OUT TO
ALL OF STANFORD.
AND ALSO SHARING IT WITH OUR
CTSA PEER HUBS.
THE SERVICE TAKES ABOUT 24 TO 7S
STEPS, THEY REQUEST THE CONSULT,
WE PICK UP THE PHONE AND TALK TO
THEM TO GET TO THE QUESTION
BEHIND THE QUESTION AND REFINE
IT INTO A PCOT FORMAT.
THAT'S WHAT THE SEARCH ENGINE
DOES, AND IN THE PROCESS ALLOWS
YOU TO DEFINE PHENOTYPES, USE 16
KNOWLEDGE GRAPHS, SO YOU CAN SAY
ANTIHYPERTENSIVES AND IT FIGURES
OUT WHAT THEY ARE, DO THE COHORT
GENERATION WHILE SEARCHING TIME
LINES.
ALL OF THAT WORK IS PACKAGED
INTO THIS PIECE OF SOFTWARE.
THE STATISTICAL ANALYSES ARE
VERY STANDARD, MOSTLY INSPIRED
FROM THE ODYSSEY COMMUNITY USING
PUBLICLY VETTED COAT.
CODE.
AND THEN WE WRITE A REPORT,
REVIEW THE RESULTS INTERNALLY
AND HAVE A DEBRIEF WITH THEM
JUST TO WALK THROUGH HOW WE
ARRIVED AT THE RECOMMENDATION
THAT WE ARRIVED AT.
SO QUESTIONS THAT REMAIN, I
BUCKET THEM INTO TWO CATEGORIES.
THERE'S QUESTIONS ABOUT THE
SERVICE'S OPERATION.
WHAT IS THE IDEAL FUNDING MODEL
FOR THIS?
THE RESEARCH WAS SUPPORTED BY
NLM, AND THEN THE HOSPITAL AND
THE DEAN'S OFFICE AND ALL
STEPPED IN, BUT LONG TERM CAN'T
RUN THIS ON GRANTS.
SO IN PARTNERSHIP WITH OUR CEO
AND EMERSON COLLECTIVE, WE SPUN
OUT A COMPANY.
THEN ONGOING, DOES SUCH A
CONSULTATION SERVICE CHANGE
PATIENT OUTCOMES?
THE ANSWER IS YES, BUT DOES IT
CHANGE FOR THE BETTER OR WORSE?
SO THAT REQUIRES LONG-TERM
FOLLOW-UP.
COULD WE GET CONSULTATIONS FROM
MULTIPLE HEALTH SYSTEMS?
LIKE WE TALK ABOUT THE LEARNING
HEALTH SYSTEM, BUT WHY CAN'T WE
DO IT ACROSS THE ENTIRE CT SA
NETWORK, FOR EXAMPLE?
COULD PATIENTS BENEFIT FROM
HAVING ACCESS TO SUCH REPORTS?
AND THEN ON THE KINDS OF ANSWERS
WE PROVIDE, WE WENT IN WITH THE
HYPOTHESIS THAT WE'D BE GIVEN
QUESTIONS OF THE NATURE IS X
ASSOCIATED WITH Z, THE ANALYSIS
WE DO IN MEDICINE.
BUT IT TURNS OUT WHAT PEOPLE
CARE ABOUT, PARTICULARLY
PATIENTS, IS THAT IF I GET X,
WHAT IS THE CLANS OF Y -- THE
OF WHY HAPPENING TO ME?
THAT'S WHAT A PATIENT CARES
ABOUT.
AND WE COULD SUMMARIZE THE RATE
OF THAT EVENT AND HISTORICAL
DATA, WHICH IS LIKE THE MAJORITY
OF THE QUESTIONS WE GOT, SO LEND
SOME SUPPORT TO THIS HYPOTHESIS,
THAT WE COULD TRY PREDICTING THE
RISK OF SOME OUTCOME OR TRY THE
HARDER PROBLEM OF COUNTERFACTUAL
INFERENCE AND TELL ME WHAT
HAPPENS IF I DON'T GET THE
INTERVENTION.
SO THAT'S WHERE THE FUTURE OF
RESEARCH IS LEADING ME TOWARDS,
AND I BELIEVE THIS IS MY LAST
SLIDE.
AMAZING GROUP I HAVE THE
PRIVILEGE OF WORKING WITH.
THIS PHOTO IS LIKE TWO WEEKS
BEFORE THE PANDEMIC.
MOST OF THEM HAVE NOW GRADUATED
OR MOVED ON TO OTHER ADVENTURES,
BUT I STILL USE THE OLD PHOTO.
AND THE URL AND MY CONTACT
INFORMATION.
I'LL STOP HERE.
>> THANK YOU, THAT WAS A PERFECT
PRESENTATION AND EXACTLY WHERE
OUR FIELD NEEDS TO HEAD.
I'M GOING TO FIRST TURN OVER TO
OUR DISCUSSANTS, JIM AND NANCY,
IF THEY HAVE QUESTIONS AND
COMMENTS THEY WANT TO START
WITH.
>> SURE.
DO YOU WANT TO START?
>> GO AHEAD, NANCY.
>> SURE.
THANK YOU AGAIN FOR THE
PRESENTATION AND CONGRATULATIONS
ON THE WORK AND THE BODY OF
WORK.
IT'S AN IMPORTANT AREA TO BRING
THE REAL WORLD EVIDENCE TO THE
POINT OF CARE OF THE CLINICAL
USER.
I HAVE A VARIETY OF QUESTIONS,
BUT MAYBE I'LL START WITH SOME
THAT ARE DATA-RELATED.
SO YOU MENTIONED THAT 17 TO 20%
FALSE POSITIVE RATE THAT YOU SAW
ON THOSE 35 CASES.
ARE YOU ABLE TO COMMENT ON SORT
OF WHAT FEATURES OR ABSENCE OF
FEATURES ACCOUNTED FOR THOSE
FALSE POSITIVES AND WHAT YOU
MIGHT BE THINKING ABOUT IN TERMS
OF BRIDGING THAT GAP?
>> THAT'S A TOUGH ONE.
SO THE CHALLENGE WITH ESTIMATING
FALSE DISCOVERY RATES IS WE NEED
AN INDEPENDENT SOURCE OF TRUTH.
AND THESE ASSOCIATIONS, THESE
179 ASSOCIATIONS, THIS DRUG AND
THIS OUTCOME, OUR BELIEF IS THAT
THEY ARE INDEED NOT ASSOCIATED.
SOME OF THEM COULD BE
ASSOCIATED, WE JUST DON'T KNOW
YET.
JUST REALLY GOOD TO GET A HARD
HANDLE ON IS THE FALSE POSITIVE
TRULY A FALSE POSITIVE?
LET'S SAY 90% OF THE TIME IT
ACTUALLY IS.
NOW WHY ARE WE SEEING THAT
ASSOCIATION?
USUALLY IT BOILS DOWN TO NOT THE
FUTURE SPACE BUT THE TEMPORAL
NATURE OF THE TIME LINE AND
HAVING SOME KIND OF CONFOUNDING
GOING ON OVER THERE, AS IN THEY
HAD SOME OTHER INDICATION OR
REASON TO HAVE THAT EVENT, WHICH
IS NOT CAPTURED IN THAT TIMELINE
AND YOU ONLY HAVE A SMALL
FRACTION OF IT, AND SO ONE OF
THE THINGS THAT WE DO IN
HINDSIGHT IS THAT YOU CAN HAVE
AN INCLUSION FILTER SAYING I'M
NOT GOING TO USE THE DATA UNLESS
I HAVE FIVE CONTIGUOUS YEARS.
AND THAT PUSHES DOWN THE CHANCES
OF GETTING FALSE POSITIVES.
>> THANKS.
I HAVE A RELATED QUESTION.
IT'S A BIT OF A METHODOLOGY BUT
ALSO A THOUGHT QUESTION WHICH
IS, CAN YOU SHARE YOUR
PERSPECTIVE ON GUARDING AGAINST
THE POTENTIALLY INADVERTENT
PERPETUATION OF HISTORICAL
BIASES IN TREATMENT?
SO IF CERTAIN POPULATIONS OR
COHORT OF -- MATCH COHORTS HAVE
SYSTEMATICALLY EITHER NOT BEEN
GIVEN CERTAIN TREATMENT OPTIONS
OR BEEN GIVEN DIFFERENT
TREATMENT OPTIONS, HOW DO WE NOT
PERPETUATE THAT IN TERMS OF A
CONSULT DIRECTION?
>> THAT IS ABSOLUTELY CRITICAL
TO HAVE A HUMAN IN THE LOOP SO
THAT EXACT QUESTION CAN BE
ASKED, AS IF IN WE ALWAYS SEE
PEOPLE OF A CERTAIN SKIN COLOR
WERE TREATED A CERTAIN WAY,
MAYBE THAT'S GOOD MEDICINE OR
MAYBE THAT WAS JUST BAD SOCIAL
DISCRIMINATION.
THERE'S NO WAY AN ALGORITHM CAN
TELL.
AND I THINK MAKING THIS THING
AUTOMATED, I DON'T THINK IS A
GOOD IDEA, AND HENCE ONE OF THE
BIG THINGS THAT WE -- THAT WE
MADE WAS THE ORIGINAL IDEA WAS
GREEN BUTTON IS A TOOL THAT
WOULD WORK INSIDE OF THE EHR.
LIKE WE ACTUALLY ENVISION A
BUTTON INSIDE OF EP INK WHEN WE
WROTE THAT PAPER.
BUT THEN WE DECIDED LET'S NOT
MAKE A BUTTON, LET'S MAKE A
SERVICE WHERE THERE IS A HUMAN
BEING LOOKING AT THE REPORT AND
SAYING, IS IT RELIABLE ENOUGH,
IS IT PLAUSIBLE, SHOULD I GIVE
TO THE TREATING PHYSICIAN OR
NOT?
>> THANKS, JIM.
DO YOU WANT TO ASK?
>> IT'S KIND OF RELATED TO THAT
QUESTION A LITTLE BIT.
YOU KNOW, IT'S SUCH AN
INTERESTING NOTION, IT'S SO EASY
TO GET AN ANSWER, AND IF YOU
ASAWM THAT PEOPLE LIKE YOUR
PATIENT WHO EITHER DID OR DID
NOT RECEIVE THE TREATMENT THAT
YOU'RE CONSIDERING, DID OR DID
NOT GET THAT TREATMENT SORT OF
RANDOMLY, THEN THAT'S GREAT.
BUT WHAT IF THERE'S SOME
CONFOUNDING FACTOR THAT YOU'RE
NOT THINKING OF, OR YOU MIGHT
THINK OF IT BUT IF YOU DON'T
LOOK FOR IT, FOR INSTANCE, SAY,
WELL, YOU KNOW, IF THEY WERE
MASSIVELY OBESE OR THEY HAD A
HISTORY OF HEART DISEASE OR SOME
OTHER THING THAT THE PHYSICIAN
WOULD NOT HAVE CHOSEN THIS DRUG,
AND SO IF YOU'RE NOT ACCOUNTING
FOR THAT, YOU MAY BE SEEING --
THERE MAY BE A BIAS IN HOW THAT
TREATMENT OR WHATEVER IT IS IS
BEING CHOSEN.
AM I MAKING SENSE?
IT MAKES SENSE IN MY HEAD,
BUT --
>> SO WE STRUGGLE WITH THAT ALL
THE TIME.
I MEAN, THERE'S ALWAYS THE
POSSIBILITY OF BIAS.
BUT I WANT TO SHOW THIS IMAGE AS
WHAT IS IT -- WHAT THE
ALTERNATIVE IS?
THAT'S OUR ALTERNATIVE.
>> OKAY.
>> SO IT'S NOT PERFECT.
I'M NOT MAKING THE CLAIM THAT
LOOKING AT PRIOR DATA OR LOOKING
AT A REPORT AND HAVING A HUMAN
IN THE LOOP IS LIKE THE PERFECT
SOLUTION.
BUT OUR ALTERNATIVE IS GUESSING,
WITH NO DATA.
>> RIGHT.
BUT WHAT IF YOU SYSTEMATICALLY
INCLUDE THINGS THAT WOULD BE
USED IN THE DECISION TO
PARTITION THE POPULATION THAT
YOU'RE LOOKING AT INTO THE
PEOPLE THAT HAVE AND DON'T HAVE
THAT WHATEVER IT IS RISK FACTOR,
CONCURRENT CONDITION, CONCURRENT
MEDICATION, WHATEVER THAT IS,
YOU KNOW, A BLOOD TEST RESULT
THAT SAYS THIS PERSON'S, YOU
KNOW, PROTHROMBIN TIME IS TOO
HIGH TO DO THIS TREATMENT OR
WHATEVER THAT IS.
YOU BRING IN AS MANY OF THOSE
THINGS AS POSSIBLE AND IF WE
WERE DOING A STUDY OF THIS AND
ENROLL PEOPLE PROSPECTIVELY,
WHAT THINGS WOULD WE USE THAT WE
WOULD WANT TO MAKE SURE WERE
INCLUDED IN OUR CONTROL AND
INTERVENTION GROUPS THAT WERE
DISTRIBUTED EVENLY ACROSS THOSE
GROUPS?
THAT REQUIRES EXPERTISE, IT
REQUIRES MAYBE LITERATURE
SEARCH, IT REQUIRES A LOT OF
OTHER WORK THAT'S NOT JUST SIT
DOWN AND HIT A BUTTON AND LOOK
AT THE DIFFERENCE BETWEEN
OUTCOMES OR CHOICES OF TREATMENT
OR WHAT HAVE YOU.
AND I THINK OUTCOME IS A
PERFECTLY GOOD TERM FOR THAT,
BUT --
>> THAT IS THE EXACT REASON, YOU
AR
ARTICULATED IT PERFECTLY, THAT
IS THE EXACT REASON WE DON'T
MAKE IT A TOOL AND IT IS A
SERVICE.
THERE IS A CONVERSATION, AND IN
THAT CONVERSATION, AND I DIDN'T
DRILL DOWN INTO IT, WE ACTUALLY
FOLLOW THE SUGGESTIONS FROM
MIGUEL HERNAN'S GROUP OF
FORMULATING A TARGET TRIAL, AND
THE MINDSET BEING IF THERE WAS
AN RCT BEING SET UP FOR THIS
QUESTION, WHAT FORM WOULD IT
TAKE?
AND THEN WE ATTEMPT TO FIND THE
PICOT CRITERIA AS CLOSE AS
POSSIBLE TO THAT RCT.
THAT IS THE JOB OF THE INTAKE
PHYSICIAN.
WE NEVER SAY THE WORD TARGET
TRIAL OR ANY OF THAT TO THE
DOCTOR REQUESTING THE
CONSULTATION, BUT THAT'S WHAT WE
ARE DOING, THAT IS THE MANUAL
WORK WE'RE DOING TO DESIGN THE
STUDY THAT IS THE MOST
DEFENSIBLE IN TERMS OF ITS
STRUCTURE.
>> OKAY.
>> I'M WONDERING IF YOU'VE
THOUGHT ABOUT -- SO IT MAKES A
LOT OF SENSE TO HAVE A PIECE OF
THIS BE THAT HUMAN CONSULT
SERVICE, THAT MAKES A TREMENDOUS
AMOUNT OF SENSE.
BUT EVEN AT THAT EVIDENCE AT THE
POINT OF CARE POINT, DID YOU
CONSIDER OR DID YOU TRY AND THEN
DECIDE IT WASN'T VIABLE OR
SOMETHING, THE ABILITY TO HAVE
THAT, THAT BASICALLY THAT DATA
PRESENTATION, BUT BE ABLE TO
CHANGE THE FILTERS ON IT, FOR
EXAMPLE, SO IF I REMOVE GENDER
FROM THIS, WHAT DO THOSE
OUTCOMES LOOK LIKE?
IF I REMOVE RACE FROM IT OR IF I
ADD RACE.
SO HOW DID THAT WORK FOR YOU?
>> SO DEFINITELY THOUGHT ABOUT
IT.
WE DECIDED NOT TO PURSUE IT,
BECAUSE IN THE COURSE OF THE
GRANT, IT WAS BECOMING TOO MUCH.
IN FACT, WE'VE HAD A TEAM FROM
EPIC VISIT US FOR A DEEP DIVE
TWICE.
WE'VE HAD CONVERSATION AS WELL.
NOT EVERYTHING HAS TO BE A
SERVICE.
AND THEN THE REPORT THAT GOES
BACK NEEDS TO HAVE THESE LEVERS
THAT A DOCTOR CAN SAY -- IN OUR
CASE, WHAT HAPPENS IS IT WOULD
BECOME A NEW REPORT.
THAT'S WHAT SOMETIMES LED TO
72 HOURS.
LIKE WE SHOWED THEM THE FIRST
CUT REPORT AND -- OH, BUT WHAT
IF I CHANGE THE AGE CRITERIA?
FINE, LET'S RE-RUN IT FOR YOU.
BUT SOME OF THOSE THINGS CAN BE
AUTOMATED.
LIKE HERE ARE THE 10 VARIATIONS
THAT A RESEARCHER IS LIKELY TO
ASK FOR.
AGE, GENDER, AGE GROUP,
INDICATIONS BEING THE EASY ONES
TO PRECALCULATE AND HAVE IT IN A
LIVE REPORT.
BUT WE DIDN'T HAVE LIVE REPORTS,
WE HAD PDFs.
SO WE WOULD JUST RE-RUN THE
REPORT AS VERSION 1.1, 1.2, 1.3.
BUT THERE'S ONLY 100 UNIQUE
REPORT.
>> IT SEEMS REASONABLE THAT A
GOAL MIGHT BE FOR THIS TO
CONTINUE TO EVOLVE TO BOTH HAVE
A CONSULT SERVICE TYPE OF BRANCH
TO IT AND A MORE SORT OF
REALTIME POINT OF CARE
INTERACTIVE.
>> 100%.
I WOULD LOVE TO DO THIS ON
COSMOS, JUST TO PUT IT OUT
THERE.
>> YEAH.
IS IT OKAY IF I ASK ANOTHER
QUESTION OR SHALL WE OPEN IT UP
TO OTHERS?
>> GO AHEAD BUT IF OTHERS CAN
RAISE THEIR HANDS IF THEY HAVE
QUESTIONS THEN WE'LL QUEUE THEM
UP.
>> THANKS, HEIDI.
ANOTHER THING I FOUND NOT REALLY
SURPRISING BUT DEFINITELY
NOTABLE IN YOUR TABLE OF
MOTIVATIONS AND SUBSEQUENT
ACTIONS, OTHERWISE KNOWN AS
OUTCOMES, THAT THE IMPACT OF
CLINICAL -- ON CLINICAL CARE WAS
THE GREATEST ALBEIT FOR VERY LOW
END 100% FOR THE RARE DISEASE
CASE, WHICH IS NOT SURPRISING
THAT THAT IMPACTED CLINICAL
CARE.
SO I THINK ONE OF THE THINGS
THAT THAT BRINGS TO MIND IS THAT
THE OPPORTUNITY TO USE VAST
POPULATION DATA TO SUPPORT
CLINICAL CARE FOR RARE CASE
PRESENTATIONS IN PARTICULAR
COULD REALLY BE GAME CHANGING.
>> 100%.
SO ON BOTH COUNTS ACTUALLY.
SO THE FIRST ONE, I THINK IT'S
WORTH DOUBLE CLICKING ON, IT
SEEMS LOW, 10 OUT OF 83, BUT
THAT'S ABOUT THE RATE AT WHICH A
SECOND OPINION CHANGES OUTCOMES.
>> YEAH.
>> AND FOR RARE DISEASES, IT HAS
MUCH HIGHER VALUE.
>> SO MY QUESTION ACTUALLY
EXTENDS ON THE RARE DISEASE
CASE, WHICH IS WHEN YOU ARE
THINKING ABOUT DOING SOMETHING
ON THE RARE DISEASE FRONT, I'M
NOT GOING TO ANSWER YOUR
QUESTION FOR YOU, I'LL HAVE YOU
ANSWER IT, BUT CAN YOU COMMENT
ON HOW EITHER YOU'VE ARCHITECTED
THINGS OR YOU WISH THINGS COULD
BE ARCHITECTED SO THAT YOU CAN
GAIN THE BENEFIT OF THAT
MATCHING ACTIVITY IN THE RARE
DISEASE CASE WITHOUT RISK OF
EXPOSURE OF INDIVIDUAL IDENTITY?
>> SO I HAVEN'T SPENT MUCH TIME
IN THE RARE DISEASE SPACE.
ALL OF THE WORK I PRESENTED IS
WITH DE-IDENTIFIED DATA.
BUT WITH RARE DISEASES, THE
USUAL DEIDENTIFICATION DOESN'T
WORK.
I MEAN, SO THE SHORT ANSWER IS
NO, I PROBABLY WANT TO CALL OUT
BRAD BEFORE I DO ANYTHING IN
THAT SPACE.
>> THANKS.
I TURN IT OVER TO ANDY.
>> THAT WAS A REALLY INTERESTING
TALK.
I'M WONDERING, YOU DIDN'T
MENTION GENETIC VARIANTS OR
RELATEDNESS AMONG CASES AT ALL,
AND WHAT ARE THE PROSPECTS, I
SUPPOSE IT WOULD BE MOST LIKELY
TO BE APPLIED WHERE THERE ARE
TARGETED VARIANTS IN TARGETED
GENES IN A KNOWN PATHWAY OR
SOMETHING RATHER THAN
GENOME-WIDE GIVEN THE SAMPLES
YOU'RE TALKING ABOUT, BUT WHAT'S
THE FUTURE OF GENETIC
INFORMATION BEING USED IN THIS
KIND OF PROCESS?
>> I THINK IT WILL BE ONE MORE
TRACK IN THE PATIENT TIMELINE,
AND THE STANFORD DATABASE IS
SMALL AND ON THE OPERATIONAL
SIDE, THE KINDS OF TESTS WE GOT,
A LOT OF THEM ARE SCANNED PDFs
WHICH ARE REALLY DIFFICULT TO
WORK WITH.
BUT IN ONCOLOGY, I TOTALLY SEE
STRUCTURED GENETIC INFORMATION
BECOMING A HIGHLY USEFUL TRACK
THAT HELPS IN DECIDING TREATMENT
A VERSUS TREATMENT B.
IT'S ALREADY THERE, THERE'S
MULTIPLE COMPANIES OFFERING
THOSE REPORTS, BUT THE DATA ARE
STILL SCATTERED IN TERMS OF
INSTITUTIONS, IN TERMS OF
PATIENTS, IN TERMS OF DIAGNOSIS
AREAS, AND THERE ISN'T ENOUGH --
BIG ENOUGH REPOSITORIES AT ONE
PLACE TO SAY IF YOU HAVE, ASIDE
FROM SAY BREAST CANCER, MAYBE,
BUT IF YOU HAVE THIS PARTICULAR
KIND OF MUTATION PROFILE, WE
RECOMMEND THIS AND BASED ON THE
PAST 500 PATIENTS, HERE'S THE
PROGNOSTIC PROFILE.
WE'RE NOT THERE YET, BUT I THINK
THAT'S THE NEXT THING THING D
HAPPEN OR SHOULD HAPPEN.
>> A QUICK FOLLOW-UP, YOU HAVE
SHARED THIS KIND OF CONSULTATION
SERVICE WITH OTHER INSTITUTION,
I GATHER.
IS THERE A PLAN TO THEN UNIFY
THE DATABASES AS WELL?
>> SO ME AS AN NIH-FUNDED --
INVESTIGATOR I DO NOT PLAN TO
TRY TO UNIFY DATABASES.
IT IS A MUCH HARDER PROBLEM AS
YOU'VE SOON WITH N3C AND ALL THE
FUSS.
IT IS A NON-TRIVIAL ENTERPRISE.
THE OTHER THING I SEE HAPPENING
IS THAT THERE IS A GOLD RUSH TO
CREATE WALLED GARDENS OF
LONGITUDINAL DATA.
THERE'S AT LEAST EIGHT TO 10
COMPANIES THAT ARE OUT THERE.
AND AS AN ACADEMIC, IT'S REALLY
DIFFICULT TO GO UP AGAINST, YOU
KNOW, MILLIONS OF DOLLARS OF --
MONEY.
THAT'S THE REASON I'VE STAYED
AWAY FROM IT AS A RESEARCHER,
BUT AS A COMMUNITY, WE'VE GOT TO
FIND A WAY TO SOLVE THIS.
WE CAN'T HAVE THE LEARNING L
SYSTEM, WE CAN'T FIGURE OUT A
WAY TO SHARE DATA.
AS SOME OF THE ETHICISTS HAVE
PUT IT, WE ALL WANT TO BENEFIT
FROM THE LEARNING HEALTH SYSTEM
BUT WE DON'T WANT TO SHARE OUR
DATA.
HOW'S THAT?
IT'S NOT GOING TO WORK.
>> PATTI.
WE CAN'T HEAR YOU, PATTI.
MAYBE DOUBLE MUTE GOING ON.
>> I GOT TOO MANY BUTTONS TO
TOUCH HERE TODAY.
THANKS VERY MUCH, NIGAM.
I COULD LISTEN TO YOU TALK ALL
AFTERNOON.
YOUR WORK IS VERY INSPIRING.
I WAS VERY INTRIGUED BY YOUR
IDEA OF SHARING THE OUTPUT WITH
THE PATIENT AND WONDERED IF
YOU'D DONE ANY EXPLORATION AT
ALL ABOUT WHAT THAT MIGHT BE
LIKE OR HOW PEOPLE RESPOND TO
THAT OR DO THEY IMMEDIATELY GO
BACK TO UCSF OR STANFORD OR WHAT
DO THEY DO?
>> SO WE'VE HAD FIVE OR SIX OF
THESE THAT WERE ACTUALLY
TRIGGERED BY THE PATIENT.
BUT BECAUSE THIS WAS AN IRB LN
FUNDED OR COVERED STUDY, WE THEN
ASKED THEM TO GO TO THEIR DOCTOR
AND HAVE THEIR DOCTOR REQUEST
IT.
AND THEN THE DOCTOR CAN CHOOSE
TO SHARE WITH THE PATIENT
DIRECTLY OR NOT.
SO I DON'T KNOW WHETHER THE
FINAL REPORT WENT TO THE PATIENT
OR NOT, BUT IT WAS DEFINITELY
TRIGGERED BECAUSE OF A PATIENT
REQUEST BECAUSE A PHYSICIAN EVEN
TOLD US, MY PATIENT SO-AND-SO IS
ASKING FOR THIS.
DOES THAT MAKE A DIFFERENCE?
I WOULD LIKE TO BELIEVE IT DOES.
THERE WAS REASON FOR ME TO ORDER
A REPORT FOR MYSELF, AND IT DID
CHANGE THE DECISION I MADE FOR
MY OWN TREATMENT.
>> INTERESTING.
>> THAT'S AN N OF 1.
I'M ONE OF THOSE 5.
>> THAT EXPERIENCE MIGHT BE VERY
INTERESTING WHEN WE LOOK TOWARDS
HOW DO WE CHANGE A PAYMENT
SYSTEM FOR CONSULTATION SERVICES
LIKE THIS.
I MEAN, I COULD SEE THAT -- A
PATIENT BEING MORE COMFORTABLE,
BEING MORE CONFIDENT IN THE
STRATEGY MIGHT BE WORTH PAYING
FOR.
TWO MORE POINTS I'M GOING TO
MAKE, YOU DON'T HAVE TO RESPOND
IF OTHER PEOPLE WANT TO ASK
QUESTIONS.
ONE OF THEM IS, I'M SO IMPRESSED
THAT YOU'RE TRYING TO TAKE INTO
CONSIDERATION THIS TIME VARIANT
DATA.
I THINK THAT'S A REALLY HARD
INFORMATICS PROBLEM, AND I DON'T
THINK WE HAVE REALLY GOOD MODELS
FOR IT.
AND I JUST FIND THAT -- THAT, TO
ME, IS A VERY IMPORTANT NEXT
STEP TO THINK ABOUT CLINICAL
RECOMMENDATIONS WHEN WE HAVE
THIS TIME OF VARIANCE.
SECOND, I'M IMPRESSED WITH THE
NUMBER OF PAPERS FROM YOUR
PROJECT, AND AS WE'VE BEEN
TALKING ABOUT MAKING RESEARCH
DATA ACCESSIBLE AND MOVING INTO
DIRECT ACCESS, ARE I WOULD BE
INTERESTED IN YOUR THOUGHTS
SOMETIME ABOUT HOW MUCH WOULD WE
NEED TO PROVIDE FOR OPEN ACCESS
COST TO YOU, IF WE WERE GOING TO
REALLY HAVE THIS BE A STRATEGY
TO SUPPORT LARGE VOLUME PAPER
PRODUCTION STUDIES.
>> NOT MUCH.
IN FACT, IT WOULD PROBABLY BE
MORE OF USING THE GOVERNMENT'S
MANDATE TO LEAN ON COMMERCIAL
PAYORS, COMMERCIAL DATA SELLERS.
THEY ALREADY HAVE REASONABLY
GOOD OR MANAGEABLE ACADEMIC
PRICE POINTS FOR LICENSING THE
DATA.
BUT THEN THEY COME WITH LIKE,
OH, YOU CAN'T GIVE TO ANYBODY
ELSE, YOU CAN ONLY RUN ANALYSIS
FOR YOURSELF AND SO ON.
THIS HAS BEEN DONE BEFORE.
SNOMED HAS A U.S.-WIDE LICENSE.
CAN WE HAVE A U.S.-WIDE LICENSE
FOR, SAY, OPTUM OR TRU, HE PICK
COSMOS, FOR RESEARCH USE, NOT
FOR PROFITING FROM IT.
BUT IF WE FIGURE OUT THAT LEGAL
LEGISLATIVE PIECE, I THINK THE
TECHNOLOGY IS NOT THE PROBLEM
HERE.
AND I DON'T THINK THE NUMBERS OF
DOLLARS WOULD ALSO SCARE
ANYBODY.
>> THAT'S VERY HELPFUL.
THANK YOU.
>> SO YOU MENTIONED, NOT FEELING
YOU COULD SUPPORT THIS AND
MOVING TO A COMMERCIAL MODEL.
CAN YOU JUST DESCRIBE THAT MODEL
A LITTLE BIT?
IS IT STILL A SERVICE SPECIFIC
TO THE ONE HEALTHCARE SYSTEM BUT
IT'S NOW A PAYMENT SYSTEM, OR
ARE YOU DEVELOPING IT AS A
COMMERCIAL ENTITY THAT WILL
ACTUALLY SERVICE THIS ACROSS
DIFFERENT INSTITUTIONS AND IF
SO, IS THERE ANY ABILITY TO
BRING THE DATA TOGETHER ACROSS
INSTITUTIONS?
YOU MENTIONED THAT DIFFICULTY.
>> SO THE COMPANY IS
ATROPOSHEALTH.COM FUNDED IN
LARGE PART BY EMERSON
COLLECTIVE, THE SAME
PHILANTHROPY GROUP THAT FUNDED
THE RESEARCH.
THE CURRENT WAY IT IS OPERATING
IS THAT NOBODY'S DATA LEAVES
THEIR ORGANIZATION.
WE TAKE THE SEARCH ENGINE AND
ALL OF THAT TO THE DATA ASSET.
AND STANFORD IS THE FIRST PAYING
CUSTOMER, AND THEY MAKE ME LOOK
SILLY, IT TOOK A YEAR AND A HALF
TO DO 100 AND THEY DID 100 IN 60
DAYS.
SO IT'S LIKE -- BUT IT'S UP AND
RUNNING, THERE WILL BE 500
SERVED TO STANFORD ITSELF ACROSS
190 OR SO PHYSICIANS.
THERE ARE TWO OTHER INSTITUTIONS
THAT HAVE SIGNED DATA CONTRACTS,
LIKE ASCO BEING PRIVATELY
ANNOUNCED.
MAYO IS GOING TO BE THE NEXT
ONE.
AND THE WAY AT LEAST I'M PUSHING
THEM, LIKE I'M NOT AN EMPLOYEE
OF THE COMPANY, MY LEGAL
RELATIONSHIP IS AN ADVISOR, AND
I TELL THEM THAT OFFER THE
ABILITY TO ANSWER THE QUESTION
ON MY INSTITUTION AND TWO OTHER
INSTITUTIONS.
BECAUSE I WOULD BE VERY
SURPRISED IF THE KINDS OF BIASES
WE SEE IN THE DATA ARE THE SAME,
LIKE HERE, HARVARD AND DUKE,
THERE'S GOT TO BE DIFFERENT
BIASES.
AND IF YOU CAN RUN THE SAME
QUESTION ON FIVE, 10 COHORT AND
THEN DO A META-ANALYSIS, WE'D BE
REALLY SOLID IN OUR ANSWERS, AS
A COMMUNITY.
AND THAT'S WHAT DOCTORS DO.
YOU ASK THREE COLLEAGUES, YOU
ASK FIVE COLLEAGUES.
YOU'RE JUST MAKING AN ASSEMBLE.
WHY DON'T WE DO AN ENSEMBLE
ACROSS 10 HEALTH SYSTEMS?
ENSEMBLES WORK.
IT'S BEEN SHOWN OVER AND OVER
AGAIN IN SO MANY DISCIPLINES.
SO THAT ALSO GETS -- MINIMIZES
THE DATA RIGHTS ISSUES AND
COMPLIANCE, LEGAL, ALL THAT
STUFF, BECAUSE ALL THAT THATG
OUT IS THE ANSWER.
AND THERE'S PAYMENT MODELS TO
SUPPORT THAT.
LIKE THERE'S CPT CODES FOR
OFFERING A SECOND OPINION BY
REVIEWING AN ELECTRONIC DATA
ASSET.
IT'S CHEAP.
IT'S LIKE 40 BUCKS OR SOMETHING,
BUT AT LEAST IT'S THERE.
>> GREAT.
THANKS.
ALL RIGHT.
ANY LAST QUESTIONS?
>> I'LL TAKE ONE, HEIDI, IF WE
CAN.
NIGAM, THERE'S A GREAT DEAL OF
INTEREST IN SOCIAL DETERMINANTS
OF HEALTH AND BRINGING IN FAMILY
STRUCTURE, BRINGING IN HOUSING,
VETERAN STATUS, ET CETERA.
AS YOU LOOK AT HOW YOUR MODELS
WERE DEVELOPED, ARE THEY ROBUST
ENOUGH TO HANDLE THIS MORE
DIFFUSE, LESS WELL-DEFINED
DATASETS, OR WOULD THAT BE AN
OVERLAY ON TOP OF THE MODEL
RESULTS THAT MIGHT REQUIRE THE
HUMAN INTERPRETATION?
>> IN THE FIRST CASE I'D
PROBABLY MAKE IT AN OVERLAY.
WHEN WE LOOKED AT RACE AND
ETHNICITY DATA ON OUR CAMPUS,
28% OF THE TIME IT WASN'T EVEN
THERE AND WHEN IT WAS THERE, WE
DID A RANDOM SELECTION AND CALL
PEOPLE AND SAY HEY, YOU SHOW UP
AS ASIAN, DO YOU BELIEVE THAT,
OR IS THAT HOW YOU WOULD
SELF-REPORT YOURSELF?
MY OWN WAS WRONG IN THE DATA.
>> OH, MY GOSH.
>> SO IT IS ABSOLUTELY TERRIBLE
DATA QUALITY.
SO THAT'S WHY THE FIRST PASS, I
WOULDN'T AUTOMATE THAT
INFORMATION.
I'VE GOT IT OVERLAID AS A SECOND
LAYER UNTIL WE FIGURE OUT DATA
QUALITY ISSUES IN THAT SPACE.
>> THAT'S HELPFUL.
THANKS.
>> OKAY, GREAT.
THEN I THINK WE'RE GOING TO MOVE
OVER TO THE REGENTS AWARD, WHICH
IT'S MY DISTINCT PLEASURE TO
ACTUALLY ANNOUNCE THE 2022
REGENTS AWARD.
WHICH RECOGNIZES -- REGENTS
AWARD RECOGNIZES SCHOLARSHIP OR
TECHNICAL ACHIEVEMENT.
THIS WAS AWARD WAS ESTABLISHED
IN 1970 BY THE BOARD OF REGENTS
TO RECOGNIZE AND STIMULATE
INDEPENDENT CREATIVITY LEADING
TO SCHOLARLY AND/OR TECHNICAL
ACHIEVEMENTS THAT ENRICH
BIOMEDICINE.
EMPHASIS IS PLACED ON
ORIGINALITY AND CREATION OF A
SCHOLARLY TREATISE, A NEW
PRODUCT OR A METHODOLOGY THAT
IMPROVES BIOMEDICAL KNOWLEDGE OR
SERVICE.
THE BOARD CONSIDERS THIS AWARD
THE HIGHEST HONOR IT CAN GIVE TO
A MEMBER OF THE STAFF.
AND WE ARE PLEASED TO PRESENT
THE REGENTS AWARD TO A RESEARCH
FELLOW WITH THE COMPUTATIONAL
HEALTH RESEARCH BRANCH AT LISTER
HILL NATIONAL CENTER FOR
BIOMEDICAL COMMUNICATIONS IN THE
NLM INTRAMURAL RESEARCH PROGRAM.
SHE IS BEING RECOGNIZED FOR HER
OUTSTANDING EFFORTS IN
DEVELOPING AN END TO END ECHO
CARDIOGRAPHY FOR CARDIAC DISEASE
DETECTION.
SHE HAS MADE SEVERAL INNOVATIONS
USING THE LATEST ARTIFICIAL
INTELLIGENCE TECHNOLOGY TO
INTERPRE ECHO CARDIOGRAPHY
VIDEOS, USING ACTIVE LEARNING IN
AN OPEN WORLD ENVIRONMENT TO
ANALYZE IMAGES OF THE HEART.
THIS INNOVATION IMPROVES
CLINICAL PRACTICE IN HEALTHCARE
FOR PATIENTS, BY ALLOWING FOR
BETTER DIAGNOSIS AND RISK
PREDICTION OF CARDIAC DISEASE.
AND THIS WORK WAS DONE IN
COLLABORATION WITH DR. SIMIR
ANTANI, IN THE INTRAMURAL
RESEARCH PROGRAM, AS WELL AS
RESEARCHERS AT NHLBI WHO WERE SO
IMPRESSED WITH THE RESULTS THAT
THEY RECOMMENDED THE TECHNOLOGY
BE PATENTED, FURTHER
DEMONSTRATING EURT DEE
THE UNIQUE TECHNICAL ACHIEVEMENT
ACCOMPLISHED.
LET'S EXTEND OUR WARM
CONGRATULATIONS FORM THIS
EXCELLENT ACHIEVEMENT.
THANK YOU, AND CONGRATULATIONS.
AND DO WE HAVE OUR RECIPIENT?
WE MAY NOT.
>> I THINK SHE'S ON THE ZOOM.
>> SHE WAS ON EARLIER.
PERHAPS SHE COULD COME OFF MUTE
AND SPEAK TO US FOR A MINUTE OR
TWO IF THAT WOULD WORK.
>> THANK YOU, EVERYONE, FOR THIS
GREAT HONOR.
LIKE I'M SO HAPPY TO BE PART OF
NLM, AND THIS VERY HEALTHY
RESEARCH ENVIRONMENT.
THANK YOU FOR THIS HONOR.
>> TERRIFIC.
WELL, IT'S WELL-DESERVED BASED
ON ALL OF YOUR ACCOMPLISHMENTS.
OKAY.
SO THANK YOU FOR THAT.
AND I THINK WITH THAT, IT IS
TIME TO MOVE TO THE CLOSED
PORTION OF THE MEETING.