GOOD MORNING,
I'M DR. STEPHEN
SHERRY, ACTING DIRECTOR OF THE
NATIONAL INSTITUTE OF HEALTH.
I'M HONORED TO WELCOME YOU TO
THE SIXTH ANNUALLINDBERG-KING
LECTURE CO-SPONSORED BY THE
NLM, FRIENDS OF THE NATIONAL
LIBRARY OF MEDICINE AND AMIA.
THIS ANNUAL LECTURE WAS
ESTABLISHED IN 2015 AS A FORUM
TO BRING TOGETHER INSIGHTS ON
THE CURRENT STATE AND THE
FUTURE OF BIO INFORMATICS AND
PATHO INFORMATION.
THIS HONORS THE LEGACY AND
CONTRIBUTIONS OF THE LATE AND
FORMER DIRECTOR DR. DONALD A.B.
LINDBERG AND FORMER DEPUTY
DIRECTOR FOR RESEARCH IN
EDUCATION, DR. DONALD WEST KING.
BEFORE I INTRODUCED TO'S
DISTINGUISHED GUEST SPEAKER I
WOULD LIKE TO THANK AMIA FOR
THEIR REMARKS.
WE WILL HEAR FIRST FROM GLENN
P. CAMPBELL CHAIR OF FLM.
AND GRETCHEN JACKSON.
GLENN, OVER TO YOU.
>> THANK YOU, ON BEHALF OF DR.
REDMOND, DR. BALLAST PRESIDENT
AND VICE PRESIDENT OF THE
FRIENDS OF NATIONAL LIBRARY OF
MEDICINE RESPECTIVELY AND ALL
ON THE NATIONAL LIBRARY OF
MEDICINE IT'S MY PRIVILEGE AND
HONOR TO WELCOME YOU AS WELL TO
THE 2023 LINDBERG KING LECTURE,
"GOT COMMUNITY? REFLECTIONS ON
THE RELEVANCE OF COMMUNITY
ENGAGEMENT IN EQUITABLE HEALTH
INFORMATICS AND DATA SCIENCE
INNOVATIONS".
THE FRIENDS ARE PLEASED ONCE
AGAIN TO CO-SPONSOR THE ANNUAL
LINDBERG KING LECTURE AT
AMERICAN MEDICAL INFORMATICS
ASSOCIATION.
DR. LINDBERG IS A FORMER
DIRECTOR OF THE NATIONAL
LIBRARY OF MEDICINE AND
INNOVATIVE GROUND BREAKER IN
INFORMATICS.
AND DR. KING, A BIO PATHOLOGIST
AND EXPERT IN EDUCATION.
THEY ESTABLISHED THE
LINDBERG-KING LECTURE IN 2015.
THEY WOULD BE THRILLED IN 2023
TO WELCOME AND LISTEN TO DR.
SUZANNE BAKKEN WHOSE KNOWLEDGE
OF BIOMEDICAL INFORMATICS IS
WILDLY HERALDED AND MENTORSHIP
ARE GLOBALLY RECOGNIZED.
AMONG MANY LAURELS AND HONORS
OF THE FRIENDS OF THE NATIONAL
LIBRARY OF MEDICINE INFORMATICS
AWARD WHICH SHE RECEIVED IN
2016.
HER RESEARCH AND CLINICAL
EXPERTISES ARE NOTED FOR
PATIENT, FOCUSED AND COMMUNITY
ENGAGEMENT.
DR. BAKKEN'S COMPASSIONATE
NATURE AND CAPACITY FOR EMPATHY
INFORM HER PROFESSIONAL LIFE
AND WRITINGS AND NO DOUBT WILL
INFORM HER WORDS TODAY.
WE REMAIN GRATEFUL TO AND
APPRECIATIVE TO OUR COLLEAGUES
AT THE NATIONAL LIBRARY OF
MEDICINE.
THE NLM MEDIA OPERATIONS, DEREK
MacLEAN, DR. SHERRY, BAPSKI AND
DR. RESNICK.
IT'S MY PLEASURE TO TURN NEXT
TO OUR VERY DISTINGUISHED
COLLEAGUE, DR. GRETCHEN
JACKSON, VICE PRESIDENT AND
SCIENTIFIC MEDICAL OFFICER AT
AMIA.
OVER TO YOU.
>> Gretchen Jackson: THANK YOU,
DR. CAMPBELL.
I'M THE CHAIR OF THE BOARD OF
DIRECTORS OF THE AMERICAN
MEDICAL INFORMATICS ASSOCIATION.
AND HONORED TO HAVE A FEW
MOMENTS TO MAKE A FEW REMARKS
ON BEHALF OF AMIA, THE
PROFESSIONAL ORGANIZATION IN
THE UNITED STATES.
I BELIEVE AN IMPORTANT PART OF
THE LEGACY OF THE NATIONAL
LIBRARY OF MEDICINE.
AMIA REPRESENTS OVER 5400
BIOMEDICAL AND HEALTH
INFORMATICS PROFESSIONALS WHO
WORK ACROSS ACADEMICS INDUSTRY,
HEALTH SYSTEMS, NONE PROFIT
AND GOVERNMENT.
IT EMERGED FROM CONVERGENCE OF
PROFESSIONAL SOCIETIES AND
CONFERENCES.
AND DR. LINDBERG HONORED TODAY
PLAYED A KEY ROLE IN EACH COME
POEN NT.
DR. LINDBERG PRESENTED AT FIRST
SYMPOSIUM OF MEDICAL CARE,
SAMSI.
ENGINEERS, SCIENTISTS AND
CLINICIANS MET TO DISCUSS
SCIENTIFIC AND CLINICALLY
SIGNIFICANT PAPERS AT THE
INTERSECTION OF COMPUTERS AND
MEDICINE.
THIS MEETING GREW RAPIDLY AND
BECAME THE PLACE TO BE TO KEEP
ABREAST OF THE EMERGING FIELD
OF MEDICAL INFORMATICS.
THEN DR. KING FORMED ACME WITH
ITS FIRST FELLOWS IN 1985 AND
IT'S ONE OF THE HIGHEST HONORS
FOR SUBSTANTIVE AND SUSTAINED
CONTRIBUTIONS TO THE FIELD OF
INFORMATICS.
IN THE 1980'S, AMERICAN
ASSOCIATION FOR MEDICAL SYSTEMS
AND INFORMATICS, WAS THE
LEADING ORGANIZATION FOR
COMPUTER SYSTEMS IN MEDICINE.
BY THE LATE 1980s, IF YOU ARE
NOT CONFUSED WITH ACRONYMS
ALREADY, THE OVER LAPSE OF
INTEREST OF LEADERSHIP ACROSS
LAMSCI, SAMSCI AND ACME WERE
SUBSTANTIAL.
FORMING A SINGLE ORGANIZATION
WAS IN THE BEST INTEREST OF ALL.
DR. LINDBERG SELECTED AS
FOUNDING PRESIDENT OF THE NEW
ORGANIZATION, WHICH IS AMIA.
WHICH WAS LEGALLY INCORPORATED
IN 1990.
THE ANNUAL MEETING OF AMIA WAS
CALLED SCAMSI FOR THE FIRST
FIVE YEARS OF MERGER AND 1987
BECAME THE AMIA ANNUAL
SYMPOSIUM WHICH IS OUR FLAGSHIP
INFORMATIC SCIENTIFIC MEETING
TODAY.
THE FIELD OF BIOMEDICAL
INFORMATICS HAS GROWN RAPIDLY
THE LAST SEVERAL DECADES FROM
ROOTS FOCUSED IN CLINICAL AND
MEDICAL APPLICATIONS TO
ENCOMPASS BIO INFORMATICS
PUBLIC HEALTH AND CONSUMER
HEALTH INFORMATICS.
IN 2022, DR. DONALD WEST KING
JOINED THE NATIONAL LIBRARY OF
MEDICINE AFTER A DISTINGUISHED
CAREER AS PATHOLOGY DEPARTMENT
CHAIR, DEAN AND EXECUTIVE VICE
PRESIDENT AT UNIVERSITY OF
CHICAGO MEDICAL CENTER.
DR. KING SERVED AS DEPUTY
DIRECTOR FOR RESEARCH AND
EDUCATION FOR THE NATIONAL
LIBRARY OF MEDICINE UNTIL 2008.
HE WAS AN AMBASSADOR TO A
DIVERSE RANGE OF SCIENTIFIC
PUBLIC HEALTH AND LIBRARY
SCIENCE ORGANIZATIONS
SUPPORTING THE EVOLUTION OF THE
NATIONAL LIBRARY OF MEDICINE'S
PROGRAMS TO KEEP PACE WITH THE
DIVERSIFICATION OF THE FIELD OF
INFORMATICS.
DR. KING WAS EQUALLY KNOWN FOR
HIS GENEROSITY, HIS CHARM AND
HIS WISE SCIENTIFIC ADVICE.
SO THIS YEAR AMIA IS ABSOLUTELY
DELIGHTED TO RECOMMEND DR. SUE
BAKKEN TO DELIVER THE
LINDBERG-KING LECTURE AND I
COULDN'T THINK OF A MORE
APPROPRIATE PERSON TO HONOR DR.
LINDBERG AND DR. KING'S LEGACIS.
DR. BAKKEN IS THIS YEAR'S
RECIPIENT OF PRESTIGIOUS AWARD
FOR EXCELLENCE, THE HIGHEST
FORETHOUGHT LEADERSHIP IN THE
FIELD OF INFORMATICS.
SHE HAS MADE BROAD AND DEEP
CONTRIBUTIONS TO THE FIELD OF
INFORMATICS INCLUDING
LEVERAGING TECHNOLOGIES TO
ADDRESS AND CARE FOR THE MOST
VULNERABLE POPULATIONS, AS WELL
AS ADDRESSING INEQUITIES IN
HEALTH AND HEALTHCARE DELIVERY
LONG BEFORE IT WAS COOL TO DO
SO.
LIKE DR. LINDBERG SHE HAS BEEN
A LEADER IN INFORMATICS
RESEARCH, EDUCATION AND
PUBLICATION AND LIKE DR. KING
SHE IS WARM AND GENEROUS AND
SHE BUILDS RELATIONSHIPS ACROSS
PROFESSIONAL ORGANIZATIONS AND
OF COURSE IS WELL KNOWN FOR HER
WISE SCIENTIFIC COUNSEL.
AS A GRATEFUL RECIPIENT MYSELF
OF NATIONAL LIBRARY OF MEDICINE
PREDOCTORAL INTERNSHIP, I AM
HONORED FOR THE OPPORTUNITY TO
OFFER REMARKS AT THIS NLM EVENT
AND I WILL TURN THE MEETING
BACK TO DIRECTOR DR. STEVE
SHERRY.
>> STEPHEN SHERRY: THANK YOU
FOR YOUR PARTICIPATION AND
PARTNERSHIP ON THIS ANNUAL
LECTURE.
AS WE BEGIN YOU WILL RECEIVE A
LIFE FEEDBACK BUTTON UNDER THE
VIDEO SCREEN.
PLEASE USE THIS TO SEND
QUESTIONS.
THIS WILL BE MODERATED BY MY
COLLEAGUE DR. JEFF RESNICK.
IT'S NOW MY PRIVILEGE AND
PLEASURE TO UNTRO DEUCE OUR
DISTINGUISHED GUEST DR. BAKKEN.
FOLLOWING NURSING AT UNIVERSITY
OF SAN FRANCISCO, SHE COMPLETED
POSTDOCTORAL FELLOWSHIP MEDICAL
INFORMATICS AT STANFORD
UNIVERSITY.
THE GOAL OF PROGRAM OF RESEARCH
IS TO PROMOTE HEALTH AND REDUCE
HEALTH DISPARITIES IN
UNDERSERVED POPULATIONS THROUGH
INNOVATIVE INFORMATICS METHODS.
FOCUS OF THE CURRENT GRANT
PORTFOLIO IS VISUALIZATION OF
HEALTHCARE DATA FOR COMMUNITY
MEMBERS, PATIENTS, CLINICIANS
AND COMMUNITY-BASED
ORGANIZATIONS INCLUDING THE
CREATION OF A VISUALIZATION
TOOLBOX TO ADDRESS COVID-19
TESTING AND VACCINE UP TAKE.
DR. BAKKEN DIRECTS THE
PRECISION AND SELF-MANAGEMENT
CENTER AND REDUCING HEALTH
DISPARITIES THROUGH INFORMATICS
PRE AND POSTDOCTORAL TRAINING
PROGRAM BOTH FUNDED BY NINR.
DR. BAKKEN HAS SERVED AS
PRINCIPLE INVESTIGATOR OF THE
AHRQ FUNDED WASHINGTON HEIGHTS
INFORMATICS INFRASTRUCTURE FOR
COMPARATIVE RESEARCH, WISER AND
IT'S FOLLOW-UP STUDY WISER FOR
YOU.
WHICH IS FOCUSED ON PROMOTING
THE USE OF WISER INFRASTRUCTURE
THROUGH STAKEHOLDER ENGAGEMENT.
DR. BAKKEN HAS RECEIVED FUNDING
FOR THE NATIONAL CANCER
INSTITUTE, NATIONAL LIBRARY OF
MEDICINE AND HEALTH RESOURCES
ADMINISTRATION.
SHE HAS PUBLISHED MORE THAN 300
PEER REVIEWED PAPERS.
IN 2010 SHE WILL RECEIVE PATH
FINDER REWARD FROM FRIENDS OF
RESEARCH.
2019 SHE HAD THE FRANCOIS GEMY
FROM INFORMATIC ASSOCIATION.
SHE IS AN ELECTED FELLOW OF THE
NEW YORK ACADEMY OF MEDICINE.
AMERICAN ACADEMY OF NURSING,
AMERICAN COLLEGE OF MEDICAL
INFORMATICS AND MEMBER OF THE
INSTITUTE OF MEDICINE NOW AT
THE NATIONAL ACADEMY OF
MEDICINE.
DR. BAKKEN, WELCOME, AND THANK
YOU FOR JOINING US TODAY.
>> Suzanne Bakken: THANK YOU SO
MUCH, DR. SHERRY FOR THAT
INTRODUCTION AND TO MR.
CAMPBELL AND DR. JACKSON FOR
THEIR OPENING REMARKS.
IT'S SUCH A PRIVILEGE AND SO
HUMBLING TO BE INVITED TO GIVE
THIS LECTURE.
AND LIKE MOST FOLKS I REALLY
WANT TO START OFF WITH SOME
PERSONAL REMARKS BECAUSE I
WOULD SAY THE DONALDS AND THEIR
MARY'S AND I ALL SHARE COLUMBIA
IN COMMON.
I DIDN'T KNOW THAT WE WOULD
WHEN I FIRST MET DON LINDBERG
IN 1986.
AND A WONDERFUL RECEPTION FOR
NET INFO '86 AT THE NATIONAL
AIR AND SPACE MUSEUM.
I WAS INTRODUCED TO DON
LINDBERG BY DAVID SCHEYERS THEN
THE AMIA PRESIDENT.
AND HE SAID, DON, I WANT YOU TO
MEET SUE.
SHE IS A NURSE STUDYING
INFORMATICS.
I THINK YOU SHOULD GIVE HER
SOME MONEY.
ONE DAY HE DID, INDEED.
AND WE DIDN'T KNOW THEN THAT IT
WOULD BE AN NLM FUNDED TRAINING
SPOT OR EVENTUALLY I WOULD GET
SOME ADDITIONAL MONEY.
BUT I WANTED TO JUST SAY ABOUT
THE COLUMBIA CONNECTION IS BOTH
DON LINDBERG AND DONALD WEST
KING WERE MEDICAL RESIDENTS AT
COLUMBIA.
THAT IN THE COLLEGE OF
PHYSICIANS AND SURGEONS.
DON LINDBERG ACTUALLY MET HIS
MARY WHEN SHE WAS WORKING AS A
NURSE IN THE VANDERBILT CLINIC
AT COLUMBIA.
AND OF COURSE MARY ELISABETH
KING WAS ALSO A GRADUATE OF
PHYSICIANS AND SURGEONS FOR HER
MEDICAL DEGREE.
IN ADDITION TO THE POSITIONS
THAT DR. JACKSON MENTIONED FOR
DR. KING, HE WAS ALSO THE CHAIR
OF PATHOLOGY AT COLUMBIA.
AND CURRENTLY THERE'S STILL,
THEY ENDOWED, THERE'S AN
ENDOWED CHAIR NAMED AFTER
DONALD WEST KING AND MARY
ELISABETH KING CURRENTLY IN OUR
DEPARTMENT OF PATHOLOGY.
I WANTED TO JUST SHARE THIS
LAST EMAIL I GOT FROM DON
LINDBERG.
DR. SHERRY MENTIONED I RECEIVED
THE FRANCOIS?
(?) AWARD.
THIS IS THE LAST EMAIL I GOT
FROM DON.
BY THE TIME I PHYSICALLY
RECEIVED THE AWARD DON HAD DIED.
SO THIS EMAIL IS REALLY
PRECIOUS.
CONGRATULATIONS SUZANNE, I
WOULD GIVE A LOT TO SEE YOU
DANCING WITH FRANCOIS GREMY.
I NEVER HAD AN OPPORTUNITY TO
MEET HIM BECAUSE WHEN HE WAS IN
THE HEIGHT OF HIS CAREER, I WAS
STILL BECOMING NURKS --
NURSE, BUT MAYBE I HAVE A DANCE
IN MY FUTURE IN ANOTHER SPACE.
IT WAS WONDERFUL GETTING TO
KNOW THE LINDBERGS,
PARTICULARLY THROUGH THE
WOODSELL COURSE.
AND ANYONE FOLLOWING UP ON
REMARKS THAT DR. JACKSON MADE
ABOUT DONALD WEST KING, WHEN
THERE ARE TIMES I WAS ON THE
BOARD OF SCIENTIFIC COUNSELLORS
FOR MR. HILL, I WOULD END UP
BEING ABLE TO SIT NEXT TO DR.
KING AT DINNER.
IT MADE YOU FEEL YOU HAD WON
THE LOTTERY.
IT WOULD ALWAYS BE SUCH AN
INCREDIBLE CONVERSATIONS.
NOW MOVING ONTO MY FORMAL
REMARKS.
I WANT TO START WITH JUST A FEW
DEFINITIONS FIRST.
THESE DEFINITIONS COME FROM A
REPORT FROM THE NATIONAL
ACADEMIES, CALLED COMMUNITIES
IN ACTION, PATHWAYS TO HEALTH
EQUITY.
I WAS VERY PRIVILEGED TO BE
ABLE TO STAFF THIS PARTICULAR
REPORT WHEN I WAS IN THE NURSE
SCHOLAR AND RESIDENCE AT THE
INSTITUTE OF MEDICINE.
I GUESS IT WAS ABOUT A DECADE
AGO.
BUT WE CAN THINK OF COMMUNITIES
IN A NUMBER OF DIFFERENT WAYS.
BUT THINKING ABOUT IT FROM THE
PERSPECTIVE OF IT BEING A
SOCIAL UNIT WITH COMMONALITIES,
SUCH AS PLACE, NORMS, RELIGION,
VALUES, CUSTOMS OR IDENTITY, OF
COURSE, ALSO THINKING ABOUT THE
NOTION OF NEIGHBORHOODS.
BUT COMMUNITIES CAN ALSO BE
ELECTRONIC.
AND WE THINK ABOUT THAT FROM
THE PERSPECTIVE OF INFORMATICS
AND DATA SCIENCE WHEN
COMMUNITIES MAY SHARE A SENSE
OF PLACE SITUATED IN A SPACE,
COULD BE VIRTUAL SPACE THAT IS
TECHNOLOGY FACILITATED.
THE THING THAT WE KNOW ABOUT
COMMUNITY ENGAGEMENT AND THE
EVIDENCE AS WELL, SYNTHESIZED
IN THIS REPORT THAT YOU SEE ON
THE SCREEN, IS COMMUNITY
ENGAGEMENT IS REALLY ESSENTIAL
TO ADVANCED HEALTH EQUITY.
AND ALSO THERE IS SUBSTANTIAL
EVIDENCE THAT FAILURE TO
APPROPRIATELY ENGAGE WITH
COMMUNITY, NEGATIVELY
INFLUENCES CLINICAL RESEARCH
PROCESS AND ITS OUTCOMES.
SO WE HAVE MUCH DOCUMENTATION
ABOUT RANDOMIZED CONTROL TRIAL
THAT DIDN'T HIT THEIR
RECRUITMENT OUTCOMES.
INTERVENTIONS THAT WERE
DEVELOPED AND WEREN'T ABLE TO
BE IMPLEMENTED BECAUSE THEY
DIDN'T TAKE INTO ACCOUNT THE
CONTEXT OF THE COMMUNITIES.
IN RECENT YEARS, THERE'S NO
DOUBT THAT THE NATIONAL
INSTITUTES OF HEALTH AND OTHER
FUNDING AGENCIES HAVE REALLY
INITIATED MANY ACTIVITIES
DESIGNED TO FACILITATE THE
ENGAGEMENT PROCESS.
FROM A PERSONAL PERSPECTIVE AT
THE MOMENT, A RECENT NIH
INITIATIVE RELATES TO ITS NOVEL
AND EXCEPTIONAL TECHNOLOGIES
AND RESEARCH ADVISORY COMMITTEE.
IT'S CALLED NEXT TRACK.
A COMMITTEE I'VE BEEN APPOINTED
TO.
THE INTERIM DIRECTOR AT NIH
CHARGED THE NEXT TRACK GROUP TO
START A GROUP CALLED ENGAGED.
ENGAGING THE PUBLIC AS PARTNERS
IN CLINICAL RESEARCH.
I'M THE CO-LEAGUE OF THE ENGAGE
WORKING GROUP.
WE ARE CHARGED WITH DEVELOPING
A VISION AND FRAMEWORK FOR
INCLUDING PUBLIC VOICES IN THE
DESIGN AND PLANNING OF
NIH-FUNDED RESEARCH AND MORE
BROADLY AROUND THE
DISSEMINATION OF THOSE RESEARCH
FINDINGS.
I'VE TALKED ABOUT COMMUNITY
ENGAGEMENT IN MANY VENUES AND
THROUGH MANY DIFFERENT LENSES.
WHAT I REALLY WANTED TO DO
TODAY WAS REALLY TO REFLECT ON
THE RELEVANCE OF COMMUNITY
ENGAGEMENT AND HEALTH
INFORMATICS AND DATA SCIENCE
INTERVENTIONS THROUGH THE LENS
OF EPISTEMIC JUSTICE, I FIRST
HEARD THROUGH A STUDENT-LED
INITIATIVE WITHIN AMIA THAT WAS
FOCUSED ON JUSTICE INFORMATICS.
AND THEN SECONDLY, I RECENTLY
HEARD A VERY ENGAGING TALK ON
THIS TOPIC AT MED INFO IN
AUSTRALIA AND IT REALLY MADE ME
WANT TO LOOK AT A NUMBER OF
THINGS I'M INVOLVED WITH
THROUGH THAT PARTICULAR LENS.
BEFORE I GET TO EPISTEMIC
JUSTICE, WHICH I WILL DEFINE, I
WANT TO TALK ABOUT, I HAVE
HEALTH INFORMATICS AND DATA
SCIENCE IN MY TALKS.
WE SEE DIFFERENT VERSIONS WHAT
IS INFORMATICS, MACHINE
LEARNING, ET CETERA.
DEPENDING ON THE LENS OF THE
FIELD YOU COME FROM, YOU MIGHT
DO A VERY DIFFERENT DIAGRAM OF
HOW THESE DIFFERENT THINGS END
UP RELATING TO EACH OTHER.
BUT ONE OF THE THINGS I FIND
MOST USEFUL IS SIMPLY THINKING
ABOUT WHETHER ONE IS FOCUSING
ON NUMBERS AS DATA, TEXT AS
DATA, IMAGES AS DATA IS ONE WAY
OF LOOKING AT IT.
FOR THE LAST FEW YEARS, OFTEN I
WOULD SAY, ONE OF THE THINGS
THAT'S DIFFERENT ABOUT
INFORMATIC RATHER THAN
ARTIFICIAL INTELLIGENCE IS WE
SPEND A LOT MORE TIME WORRIED
ABOUT THE HUMAN IN THE LOOP.
BUT CERTAINLY IN THE LAST TWO
YEARS WE HAVE HEARD A LOT MORE
ABOUT HUMAN-CENTERED A.I.
EPISTEMIC JUSTICE COMES FROM
MIRANDA FRICKER WHO WROTE THIS
BOOK IN THE 70s.
IT'S DEFINED AS A WRONG DONE TO
SOMEONE SPECIFICALLY IN THEIR
CAPACITY AS A KNOWER.
YOU CAN THINK ABOUT IT FROM A
COUPLE OF RELATED SUB CONCEPTS
OF EPISTEMIC INJUSTICE.
TESTIMONIAL INJUSTICE OCCURS
WHEN A PREJUDICE CAUSES A
HEARER TO GIVE A DEFLATED SENSE
OF CREDIBILITY TO A SPEAKER'S
WORD.
THIS MAY BE INDIVIDUAL OR IT
MAY BE AT THE STRUCTURAL LEVEL.
THE OTHER RELATED CONCEPT IS
HERMENEUTICAL INJUSTICE, THIS
HAPPENS WHEN A GAP IN
COLLECTIVE INTERPRETIVE
RESOURCES PUTS SOMEONE AT AN
UNFAIR DISADVANTAGE WHEN IT
COMES TO MAKING SENSE OF THEIR
SOCIAL EXPERIENCES.
THIS MAY BE DUE TO LACK OF
CONCEPTS TO EXPRESS ONE'S
EXPERIENCE OR MISALIGNMENT
BETWEEN ONE'S EXPERIENCE AND
SOCIALLY ACCEPTED CONCEPTS.
WHEN THINKING ABOUT IT I THINK
OF ONE OF MY FORMER POSTDOCS
WORK.
MAYA TULOR IS FUNDED BY
NATIONAL INSTITUTE OF RESEARCH
FOR HER WORK ON PAIN
COMMUNICATION FOR THE MONG?
(?) POPULATION.
THE YOUNGER REAL WHERE I HAVE
ORAL RATHER THAN WRITTEN
COMMUNICATION.
THEY WERE HAVING ISSUES
COMMUNICATING WITH CLINICIANS
AND GETTING ADEQUATE PAIN
MANAGEMENT.
SO FOR EXAMPLE, ONE OF THE
CONCEPTS THAT BECAME VERY CLEAR
IN THE WORK THAT DR. MOORE DID,
WAS THE NOTION OF PAIN FEELING
LIKE A ROOSTER PECKING AT YOUR
SKIN.
AND SO, VERY MUCH, THIS IS AN
INSTANCE OF HERMENEUTICAL
INJUSTICE CAN OCCUR AND THE
CLINICIAN DIDN'T NECESSARILY
HAVE, AND THE PATIENT
EXPERIENCING THE PAIN DIDN'T
HAVE THE INTERPRETIVE RESOURCES.
SO SHE IS FOCUSED ON CREATING
THOSE TYPE OF COMMUNICATION
TOOLS THAT CAN HELP WITH THAT.
THE NOTIONS OF EPISTEMIC
INJUSTICE CAME INTO THE
LITERATURE A BIT LATER IN THE
MID 80s.
IT'S BEEN ADDRESSED IN SOME
DIFFERENT WAYS.
SOME IS JUST NOTIONS OF THE
PEOPLE WHO ARE ILL IN GENERAL.
ALSO FROM THE PERSPECTIVE OF
PEOPLE WITH MENTAL ILLNESS.
PEOPLE EXPERIENCING PAIN.
AND MUCH OF THIS HAS TO DO WITH
HAVING CLINICIANS DISCREDIT
THEIR LIVED EXPERIENCE, BEING
ILL, EXPERIENCING A MENTAL
ILLNESS OR THEIR PAIN
EXPERIENCE.
ALSO THIS HAS COME UP MORE
RECENTLY IN A LANCET GLOBAL
HEALTH PER ASPERA PERSPECTIVE
THINKING HOW WE COLLABORATE,
VERSUS THE DOMINANT PERSPECTIVE
THAT MAY COME FROM SCIENTISTS
WHO ARE PARTICULARLY TRAINED TO
FOCUS ON GENERALIZABLE FINDINGS
AND HOW THAT PLAYS OUT IN
GENERATING KNOWLEDGE.
ALSO TIES TO CONCEPTS THAT HAVE
COME UP IN THE LITERATURE,
RELATED TO THINGS SUCH AS
COLONIALIST APPROACHES TO
SCIENCES, ET CETERA.
MORE RECENTLY, AND THE
LITERATURE HAS INCREASED EVEN
SINCE I HEARD BRYAN CHAPMAN
TALK ABOUT THIS, THIS SUMMER IN
MED INFO.
MORE LITERATURE HAS BEEN
GENERATED THINKING ABOUT THE
POTENTIAL OF HEALTH INFORMATICS
AND THE DATA SCIENCE
INNOVATIONS AND PERPETUATING
EPISTEMIC INJUSTICES.
CONVERSATIONAL A.I. AND THE
FACT THE PATIENT MAY NOT BE
ABLE TO ARTICULATE SOMETHING
LIKE A SYMPTOM IN A WAY THAT IS
UNDERSTOOD BY THE
CONVERSATIONAL A.I. AND THEN
END UP HAVING AN INAPPROPRIATE
EXCHANGE.
AND PARTICULARLY THAT PATIENT
COULD END UP FEELING LIKE THEIR
EXPERIENCE IS NOT BEING
UNDERSTOOD.
WHEN WE LOOK AT IT FROM THE
PERSPECTIVE OF GENERATIVE A.I.,
OF COURSE GENERATIVE A.I.
DEPENDS VERY MUCH ON THE DATA
THAT THE TOOLS ARE TRAINED ON.
SO THE ISSUANCE BEING THERE CAN
BE THAT EXISTING DATA, MAYBE
SERIOUSLY BY DUE TO LACK OF
GENDER, ETHIC, RACIAL,
RELIGIOUS DIVERSITY AMONG
OTHERS.
SO THIS ENDS UP BEING A MATTER
OF TESTIMONIAL INJUSTICE.
WE REALLY CAN THINK ABOUT THIS
AS MISSING OR SILENCING OF SOME
VOICES.
AND SO WHEN WE THINK ABOUT IT
FROM THE PERSPECTIVE OF
INTERPRETIVE INJUSTICE THERE IS
A DUTCH RESEARCHER NAMED
GEORGIA POSEY WHO HAS BEEN
DOING SOME VERY INTERESTING
WRITINGS IN THIS AREA.
SHE GIVES SOME EXAMPLES OF THE
POTENTIAL HARM THAT CAN COME
FROM MACHINE LEARNING AND
PHENOTYPING.
SHE USES THE EXAMPLE OF
AUTOMATED PREDICTION DRUG
MONITORING PROGRAMS THAT
PREDICT PATIENT RISK OF
MISUSING OPIOIDS.
SO WE CAN THINK ABOUT THAT FROM
THAT PARTICULAR PERSPECTIVE OF
REALLY HAVING SOME SYSTEMS OR
PHENOTYPE PRODUCE A RISK THAT
IS SEEN MORE AS THE GROUND
TRUTH RATHER THAN REALLY TAKING
INTO ACCOUNT WHAT THE PATIENT'S
EXPERIENCE OF THAT MIGHT
ACTUALLY BE.
SO ALTHOUGH THERE HASN'T BEEN A
LOT OF ATTENTION IN THE
INFORMATIC AND DATA SCIENCE
LITERATURE, THROUGH THE LENS OF
EPISTEMIC INJUSTICE WE DO HAVE
MUCH LITERATURE THAT HAS THE
POTENTIAL TO CONTRIBUTE TO IT.
WE CAN THINK ABOUT OUR BODY OF
LITERATURE ON HUMAN-CENTERED
DESIGN OF INNOVATIONS.
THINKING ABOUT CITIZEN SCIENCE
APPROACHES.
WE HAVE WORKED WITHIN HEALTH
INFORMATIC WORK OF PATIENT
KNOWLEDGE WORK INTO WAYS OF
KNOWING.
OPEN NOTES CAN BE LOOKED AT AS
A STRATEGY FOR REALLY MAKING IT
POSSIBLE TO MITIGATE EPISTEMIC
INJUSTICE BY PROVIDING ACCESS
AND ALLOWING THE INDIVIDUAL TO
APPLY THEIR CAPACITY AS A
KNOWER.
WE ALSO HAVE DIFFERENT TYPES OF
STRATEGIES THAT CAN BE FOCUSED
ON INCREASING CAPACITY FOR
COMPREHENSION ANALYSIS AND
INTERPRETATION OF DATA AND
INFORMATION.
I'M GOING TO WALK THROUGH SOME
EXAMPLES OF MY OWN WORK.
AND JUST VIEWING IT THROUGH,
VIEWING IT RETROSPECTIVELY
THROUGH THE LENS OF EPISTEMIC
INJUSTICE.
SO I WANT TO B*E MAKE SURE IT'S
CLEAR THIS IS A RETROSPECTIVE
VIEW I WASN'T THINKING OF IT
FROM THE PHILOSOPHICAL
VIEWPOINT AT THE TIME I WAS
DOING THE RESEARCH.
I WANT TO BRIEFLY ILLUSTRATE
THIS THROUGH A FEW DIFFERENT
PROJECTS.
SO IN ADDITION TO THE SUPPORT
FOR THE TRAINING AT STANFORD
THIS WAS MY FIRST MONEY I GOT
FROM THE NATIONAL LIBRARY OF
MEDICINE.
SO FOR MANY DECADES, THE NLM
HAS HAD AN INCREDIBLE HIV/AIDS
OUTREACH PROGRAM.
AT THE TIME I WAS AT UNIVERSITY
OF CALIFORNIA, SAN FRANCISCO,
WHERE I MIGHT ANECDOTALLY ADD I
HIRED DR. JACKSON IN HER FIRST
FACULTY POSITION.
BUT I HAD THE OPPORTUNITY
BECAUSE OUR SCHOOL WAS WORKING
WITH THE GLIDE METHODIST CHURCH
IN THE TENDERLOIN IN SAN
FRANCISCO.
WE HAD A CLINIC THERE.
I WAS FOCUSED ON PUTTING
INFORMATICS RESOURCES IN THE
CLINIC AND IT PROVIDED THE
PERFECT OPPORTUNITY BECAUSE
THIS WAS A HOMELESS CLINIC,
WHERE BESIDES BEING HOMELESS
MANY PEOPLE WERE HIV POSITIVE
AND HAD ISSUES, MENTAL HEALTH
ISSUES, ET CETERA.
BUT WE RECEIVED A VERY SMALL
GRANT THROUGH THE OUTREACH
PROGRAM TO IMPLEMENT A
WEB-BASED INFORMATION RESOURCE
AT THE CHURCH AND ITS CLINIC.
SO THINKING ABOUT THIS IN THE
PAST, WHAT WE ARE REALLY TRYING
TO DO IN THIS PARTICULAR
PROJECT IS REALLY TO ADDRESS
HERMENEUTICAL INJUSTICE IN
HIV/AIDS CARE AND SELF
MANAGEMENT.
SO MUCH OF THE ISSUE WE WERE
DEALING WITH, ALTHOUGH WE
PROVIDED TAILORED ACCESS TO
HIGH QUALITY HIV/AIDS
INFORMATION SITES, MANY OF THEM
REALLY REQUIRED HIGH LITERACY
LEVELS BEYOND WHAT THE CLINIC
CLIENTELE HAD.
SO WE REALLY NEEDED TO AUGMENT
WHAT WE WERE DOING WITH
TECHNOLOGY WITH HUMAN
INFORMATION NAVIGATORS AND WE
DID THIS THROUGH OUR NURSING
INFORMATIC STUDENTS WHO WORKED
WITH THE CLINIC TO GET PEOPLE
ONBOARD.
I COULD SAY IT WAS INCREDIBLY
SUCCESSFUL.
IT WAS A RELATIVELY SMALL
AMOUNT OF MONEY.
BUT SOME INDIVIDUALS WITH HELP
FROM THEIR HUMAN INFORMATION
NAVIGATORS JUST GOT VERY
ENCHANTED WITH THE POWER THAT
THE ACCESS TO THESE RESOURCES
WERE GIVING THEM.
AND A NUMBER OF THEM SOUGHT
FUTURE TRAINING IN THE FIELD OF
COMPUTER TECHNOLOGY.
SO IT ACTUALLY ENDED UP BEING
LIFE-CHANGING MOVING THEM FROM
BEING HOMELESS TO BEING
EMPLOYED AND HOUSED AND SOME OF
THOSE KINDS OF THINGS.
SO THIS REALLY, WHEN I THINK
ABOUT MY WORK IN THE COMMUNITY,
THIS IS WHERE I FEEL LIKE THE
FIRST START WAS WITH GETTING
THIS FUNDING, PROBABLY IN ABOUT
1998 OR SO.
WHEN I THINK ABOUT IT FROM THE
PERSPECTIVE OF MY TIME AT
COLUMBIA, ONE OF THE FIRST
PROJECTS THAT I DID WORKING AT
COLUMBIA UNIVERSITY MEDICAL
CENTER, WHICH IS IN THE MIDDLE
OF WASHINGTON HEIGHTS.
A VERY VIBRANT PRIMARILY LATINO
IMMIGRANT COMMUNITY, WE WERE
FUNDED IN THE FIRST ROUND OF
THE CLINICAL AND TRANSLATIONAL
SCIENCE AWARDS.
AND THE FIRST OPPORTUNITY TO
GET A SUPPLEMENT TO THAT
INITIAL GRANT.
IF YOU CAN REMEMBER AT THAT
POINT IN TIME, ALL CTSA'S WERE
REQUIRED TO HAVE A COMMUNITY
ENGAGEMENT COURSE.
SO THAT WAS PART OF THE
BEGINNING.
BUT THE FIRST STUDY WE DID AS
PART OF OUR SUPPLEMENT WAS
REALLY TO UNDERSTAND BARRIERS,
ENABLERS AND INCENTIVES FOR
RESEARCH PARTICIPATION FROM THE
PERSPECTIVE OF OUR AM BULATORY
RESEARCH CARE NETWORK.
SO IN THIS PARTICULAR STUDY, WE
WORKED WITH PEOPLE IN THE
COMMUNITY, COMMUNITY MEMBERS,
CLINICIANS IN THE COMMUNITY MET
WITH POLICY MAKERS IN THE
COMMUNITY AS WELL.
I REALLY CAME AWAY WITH REALLY
IMPORTANT LESSONS I HAVE TAKEN
FORWARD IN MY PROGRAM OF
RESEARCH.
THAT IS, THINKING ABOUT ANY
STUDY THAT WE DO, THAT IT
REALLY NEEDS TO HAVE MULTIPLE
MESSAGES.
SO IN ADDITION TO YOUR
SCIENTIFIC PUBLICATION, IT'S
CRITICALLY IMPORTANT THAT YOU
HAVE A MESSAGE FOR THE
COMMUNITY FROM WHICH THE
PARTICIPANTS CAME.
IT'S IMPORTANT THAT THE
CLINICIANS IN THE COMMUNITY
HAVE INFORMATION THAT THEY CAN
USE AS WELL.
IN THEIR CARE PROVISION.
AND ALSO THINKING ABOUT OUR
LOCAL POLICY MAKERS BECAUSE
THEY WANT TO DO RIGHT BY THEIR
CONSTITUENTS AND PROVIDING
SCIENTIFIC DATA TO THEM THAT
THEY CAN USE FOR THEIR WORK IS
VITAL AS WELL.
AND SO I'VE KIND OF CONTINUED
THOSE IDEAS MOVING FORWARD IN
MY RESEARCH WHERE I REALLY HAVE
THE OPPORTUNITY TO DO IT AT
SCALE IS IN THE STUDY THAT DR.
SHERRY MENTIONED.
WHICH WAS SEVERAL GRANTS FROM
ARK AND A PROJECT CALLED THE
WASHINGTON HEIGHTS INWOOD
INFORMATIC INFRASTRUCTURE FOR
COMPARATIVE EFFECTIVENESS
RESEARCH.
OR WE CALL IT WICER FOR SORT.
BUT THE IDEA FLT PROJECT WAS
REALLY THE BRAIN CHILD OF ADAM
WILCOX NOW A PROFESSOR IN
WASH-U IN ST. LOUIS.
REALLY THINK ABOUT, IF YOU DID
THE FRAMINGHAM STUDY BUT WITH
INFORMATIC TOOLS IN THE
COMMUNITY OF WASHINGTON
HEIGHTS, INSTEAD OF FRAMINGHAM.
SO THE BASIC IDEA WAS THINKING
ABOUT IT FROM THE PERSPECTIVE
OF A PATIENT, THEY HAVE MANY
DIFFERENT DATA SOURCES,
INPATIENT, OUTPATIENT, HOME
CARE, MAYBE LONG-TERM CARE.
THEY COULD BE IN A TRIAL,
SURVEY DATA.
WE WERE GOING TO PULL TOGETHER
THESE DISPARATE INFORMATION AND
DATA RESOURCES INTO A RESEARCH
DATA WAREHOUSE.
CREATE A TOOL WHICH WAS CALLED
RESEARCH DATA EXPLORER THAT THE
RESEARCHERS CAN USE TO IMPROVE
THE HEALTH OF THE COMMUNITY.
AND WHERE MY CONTRIBUTION TO
THE PROJECT REALLY COMES IN IS
IN THIS AREA OVER HERE, WHICH
IS REALLY THINKING ABOUT MAKING
SURE THAT WE INTEGRATE THE
COMMUNITY.
SO THIS WASN'T THE ORIGINAL
INTENT WAS NOT NECESSARILY TO
RETURN DATA TO THE COMMUNITY
BUT I FELT IT WAS VITALLY
IMPORTANT GIVEN WHAT I HAD
LEARNED IN OUR EARLIER ACN
STUDY AND THE FACT THAT WE HAD
SPENT TREMENDOUS RESOURCES
COLLECTING DATA FROM ALMOST
6,000 LATINOS, PRIMARILY IN
SPANISH, SO PEOPLE WHO HAVE
TYPICALLY BEEN NOT PRESENT IN
RECENT STUDIES, THAT I WANTED
TO MAKE SURE THERE WAS A WAY
THAT THE RESEARCH PARTICIPANTS,
AS WELL AS THE BROADER
COMMUNITY AND THE POLICY MAKERS
IN THE COMMUNITY COULD HAVE
ACCESS TO THAT DATA TO DO THE
WORK THAT THEY NEEDED TO DO.
I KNEW FROM THE PERSPECTIVE OF
THINKING ABOUT GIVING IT BACK
TO THE COMMUNITY, WE HAD DATA
ON ALMOST 6,000 PEOPLE.
WE KNEW THAT THE MAJORITY OF
THE PEOPLE HAD LIMITED HEALTH
LITERACY.
SO WE REALLY HAD TO THINK ABOUT
WHAT WOULD BE THE APPROPRIATE
STRATEGY AND SO IT MADE SENSE
FROM MY PERSPECTIVE TO REALLY
THINK ABOUT HOW WOULD WE
APPROACH THIS THROUGH VISUAL
COMMUNICATION?
AND BY WHAT I'M TALKING ABOUT
HERE IS CONVEYANCE OF IDEAS AND
INFORMATION AND FORMS THAT
COULD BE SEEN, COMPREHENDED ON,
ACTED ON FOR SELF MANAGEMENT
AND COMMUNICATION WITH
HEALTHCARE PROVIDERS.
IT WAS IMPORTANT IT BE
UNDERSTOOD BY INDIVIDUALS WITH
VARYING LEVELS OF HEALTH
LITERACY.
WE HAD TO MAKE SURE THAT IT
WOULD BE COMPREHENSIBLE IN BOTH
ENGLISH AND SPANISH.
WE UNDERTOOK A HUMAN-CENTERED
PARTICIPATORY DESIGN OF
INFOGRAPHICS FOR INCORPORATING
COMMUNITY MEMBERS LIVED
EXPERIENCE AND THIS WOULD BE AN
EXAMPLE OF FACILITATING
TESTIMONIAL INJUSTICE.
SO WE DID ABOUT A DOZEN FOCUS
GROUPS, EXCUSE ME,
PARTICIPATORY DESIGN SESSIONS
IN THE COMMUNITY.
MOST OF THEM IN SPANISH TO
ITERATE THE DESIGNS FOR WHAT WE
WOULD USE TO RETURN THAT DATA
TO THE COMMUNITY.
AND SO, FROM THE PERSPECTIVE OF
HERMENEUTICAL INJUSTICE, WE
WERE TRYING TO MITIGATE
HERMENEUTICAL INJUSTICE USING
THE INFOGRAPHICS AND A TOOL TO
TAILOR THEM SO WE COULD RETURN
INDIVIDUAL RESULTS TO COMMUNITY
MEMBERS.
AND THIS WOULD AUGMENT WHAT WE
DID IN TERMS OF SHARING
AGGREGATE RESULTS WITH POLICY
MAKERS IN THE COMMUNITY WITH
NEW YORK PRESBYTERIAN HOSPITAL
SO THEY COULD USE IT TO INFORM
THEIR SERVICE DELIVERY IN THOSE
TYPES AND THINGS.
AND ALSO INFORMATION THAT WE
WOULD GIVE, WHICH WE COULD MAKE
AVAILABLE TO COMMUNITY-BASED
ORGANIZATIONS FOR THE WORK THEY
WERE DOING.
SO I JUST WANT TO GIVE YOU SOME
EXAMPLES OF SOME OF THE THINGS
THAT WE DEVELOPED.
SO ONCE AGAIN, WE REALLY USED
THE PARTICIPATORY DESIGN
PROCESS TO MAKE SURE THAT WE
HAD THE INPUT OF THE COMMUNITY
MEMBERS AND WE ARE WORKING ON
THE CO-DESIGN.
AND THEN THE INFOGRAPHICS COULD
BE THOUGHT OF AS PART OF A
STRATEGY TO MITIGATE
HERMENEUTICAL INJUSTICE BY
PROVIDING A COMMON
COMMUNICATION TOOL.
SO ONE OF THE THINGS WE WANTED
TO DO IS TO BE ABLE TO SHARE
SOME COMPARISONS BETWEEN
INDIVIDUALS, COMPARISONS WITH
OTHER WOMEN, FOR EXAMPLE, IN
THE AGE GROUP.
SO THAT INDIVIDUALS COULD HAVE
AN UNDERSTANDING AGAINST OTHERS
IN HOW THEY WERE DOING.
THIS IS AN EXAMPLE OF A PSYCHO
METRICALLY SOUND FATIGUE
MEASURE.
THE NOTION OF FEELING RUN DOWN.
WE ALSO TRIED TO COMMUNICATE
OVERALL HEALTH.
WE DID THIS THROUGH THE USE OF
ICON ARRAYS.
FOR MOST INSTANCES THE ICON
ARRAYS DIDN'T WORK VERY WELL.
BUT THEY CERTAINLY WORKED FINE
IN USING STARS FOR OVERALL
HEALTH.
SO AS YOU CAN IMAGINE, PEOPLE
WERE QUITE ACCUSTOMED TO SEEING
STARS FOR THINGS SUCH AS
RESTAURANTS AND MOVIES AND SOME
OF THOSE KINDS OF THINGS.
SO ONCE AGAIN WE WERE WANTING
TO GIVE PEOPLE THEIR INDIVIDUAL
DATA AND LET THEM KNOW HOW IT
COMPARED TO OTHER PEOPLE OF
THEIR GENDER AND AGE.
THIS WAS, WE INCORPORATED A
NUMBER OF PATIENT-REPORTED
OUTCOMES, MEASUREMENT,
INFORMATION SYSTEM, THE PROMISE
MEASURES WHICH ARE VERY
FREQUENTLY USED COMMON DATA
ELEMENT FOR NIH STUDIES.
AND IN THIS, EVERYTHING IS
MEANED HAVING 50 AS AVERAGE.
THE WAY THE PROMIS MEASURES
WORK, IF YOU HAVE MORE OF
WHAT'S GIVEN OF THE PARTICULAR
THING BEING MEASURED, IT MEANS
YOU HAVE MORE OF THAT.
SO IN THIS INSTANCE, WE ARE
USING A NUMBER LINE, WE ARE
USING GREEN AND RED COLORS.
GREEN FOR BETTER.
RED FOR WORSE.
AND ALSO SPECIFICALLY POINTING
OUT WHERE THEIR SYMPTOM SCORE
IS.
IT WAS PRETTY INTERESTING IN
LOOKING AT THE SELF-REPORTED
SYMPTOMS, OVER TIME.
AND AGAINST IN TERMS OF THE
PROMIS MEASURES IS THE ONLY
THING WHERE, AS A WHOLE, OUR
SAMPLE ENDED UP BEING WORSE IS
IN SLEEP DISTURBANCE.
THE STUDY WAS OVER A DECADE AGO.
NOW EVERY DAY IT SEEMS WE KNOW
HOW IMPORTANT SLEEP DISTURBANCE
IS TO SO MANY THINGS THAT ARE
GOING ON IN PEOPLE'S HEALTH.
IN ADDITION TO WANTING TO USE
VISUAL COMMUNICATION TO LET
PEOPLE KNOW HOW THEY COMPARE TO
OTHER PEOPLE OF THEIR AGE AND
GENDER AND FOR MUCH OF THIS WE
WERE USING OUR OWN DATA IN THE
COMMUNITY.
SO IN OTHER INSTANCES THAT ARE
DOING THAT COMPARISON BECAUSE
MAYBE EVERYONE IN THE COMMUNITY
WAS TRUE.
LOW VEGETABLE CONSUMPTION,
LOWER THAN AVERAGE PHYSICAL
ACTIVITY.
JUST KNOWING HOW YOU DO AGAINST
EVERYONE ELSE MAY NOT BE
HELPFUL FOR ALL THINGS.
SO WE ALSO WANTED TO
COMMUNICATE HOW PEOPLE COMPARE
WITH CRITERION.
IN THIS INSTANCE WE HAD
MEASURES OF BODY MASS INDEX.
SO ONCE AGAIN, YOU SEE THE
NOTION OF A NUMBER LINE THAT
HAS CONTINUED TO BE A GOOD WAY
TO REPRESENT DIFFERENT TYPES OF
DATA WE FOUND IN OUR WORK
THROUGH THE YEARS.
BUT WE NOT ONLY HAVE THE NUMBER
LINE, WE HAVE THE WORDS THAT
DEFINE WHAT THOSE AREAS ARE.
BUT WE ALSO HAVE THE BODY
SHAPES TO GIVE AN IDEA WHAT
THOSE NUMBERS MIGHT MEAN.
WE HIGHLIGHT WHAT THE
INDIVIDUAL'S WEIGHT OR B.M.I.
IS IN SEVERAL DIFFERENT WAYS.
AND THEN WE ALSO INCLUDED A
DEFINITION ALONG WITH IT AS A
WAY OF COMMUNICATING B.M.I.
I ALSO VERY MUCH WANTED TO HAVE
A WAY TO COMMUNICATING
DIFFERENT ASPECTS OF HEALTH IN
A COMMON VISUAL.
AND THIS IS ACTUALLY A PRETTY
CHALLENGING, AT LEAST SOMEWHAT
CHALLENGING PROBLEM, BECAUSE IN
SOME INSTANCES IT'S EASY TO
COMPARE THINGS THAT HAVE A
COMMON DENOMINATOR.
WE USED A LOT OF CDC 30-DAY
MEASURES SO IT WAS EASY TO SHOW
THOSE TOGETHER.
BUT WHEN WE WERE TALKING ABOUT
THESE TYPES OF THINGS, THEY HAD
A DIFFERENT DENOMINATOR.
WE WANTED TO SHOW PHYSICAL
ACTIVITY, OVERALL HEALTH,
MENTAL HEALTH, FRUIT AND
VEGETABLE CONSUMPTION AND
WANTED TO COMPARE WITH IDEAL.
WE WENT THROUGH MANY ITERATIONS
OF THIS AND THIS ENDED UP BEING
THE FINAL VISUALIZATION WE CAME
UP WITH.
AND ONE OF THE THINGS THAT'S
VERY HARD IS PEOPLE HAVE
DIFFICULTY IMAGINING A
PROPORTION.
SO YOU SEE THAT LITTLE FRUIT
AND VEGETABLE CONSUMPTION.
IT'S HARD FOR SOMEONE WITHOUT
HAVING THE DOTTED LINES AROUND
IT TO GET A GOOD IDEA OF HOW
FAR AWAY THEY ARE FROM THE
IDEAL.
WE FOUND IN THIS INSTANCE BY
ADDING THE DOTTED LINES AND
ADDING THE IDEAL, PEOPLE WOULD
GET A BETTER SENSE OF WHERE
THEY WERE.
WE ALSO WANTED TO HELP IN TERMS
OF NOT ONLY RETURNING THE
RESULTS BUT ONCE AGAIN FROM THE
PERSPECTIVE OF HERMENEUTICAL
INJUSTICE HELPING PEOPLE TO
MAKE SENSE OF THE RESULTS.
AND WHY DOES IT MATTER IF YOUR
BLOOD PRESSURE IS HIGH?
AND SO YOU SEE, WE DISPLAY A
BLOOD PRESSURE AND ALSO INCLUDE
THE RISKS OF HIGH BLOOD
PRESSURE.
ONE OF THE THINGS THAT'S
NOTABLE IN THIS, WE INCLUDE
BOTH THE MORE COLLOQUIAL TERM
AS WELL AS THE PROFESSIONAL
TERM.
BECAUSE WE FIND IN MANY
INSTANCES THEIR CLINICIANS MAY
BE USING THE PROFESSIONAL TERM.
SO WHEN WE DID OUR
PARTICIPATORY DESIGN, WE DID IT
IN-PERSON.
COLUMBIA HAS A COMMUNITY
STOREFRONT IN THE NEIGHBORHOOD.
WE DID THE SESSIONS THERE.
AND EVERYONE GOT A NICE STACK
OF OUR DESIGNS AND THEY DID A
VARIETY OF DESIGNS FOR EACH
THING WE ARE TRYING TO MEASURE.
AND THEY COULD WRITE ON THEM,
GIVE IT BACK TO US, DO WHATEVER
THEY WANT WITH THEM.
I WOULD SAY THIS WAS THE ONE
THAT WALKED OUT OF THE ROOM THE
MOST.
ONE OF THE THINGS WE QUERIED
PEOPLE ABOUT IN THE
PARTICIPATORY DESIGN IS IF
THEIR BLOOD PRESSURE WASN'T
HIGH, WOULD THEY STILL WANT TO
KNOW THE RISKS OF HIGH BLOOD
PRESSURE.
BECAUSE HYPERTENSION WAS SO
COMMON IN OUR COMMUNITY, THEY
KNEW SOMEONE WITH HIGH BLOOD
PRESSURE.
IF I HAD TO BET WHICH OF OUR
INFOGRAPHICS ENDED UP UNDER A
MAGNET ON REFRIGERATORS IT
WOULD BE THIS ONE.
AND UNITED HEALTHCARE USES THIS
IN THEIR CONSUMER DICTIONARY
AND PEOPLE HAVE DONE FURTHER
STUDIES WITH THIS.
OF COURSE THIS IS, TO BE ABLE
TO DO THIS YOU WANT TO BE ABLE
TO DO IT AT SCALE.
SO TO BE ABLE TO TAILOR THE
INFOGRAPHICS, WE CREATED A
SYSTEM WE CALLED ENTICE3 FOR
SHORT.
ELECTRONIC TAILORED INFOR
GRAPHICS FOR COMMUNITY
ENGAGEMENT, EDUCATION AND
EMPOWERMENT.
MORE OF A PROGRAM REVERSION AND
ANOTHER MAYBE MORE BROADLY
UNDERSTANDABLE VERSION.
BUT THE BASIC IDEA IS WHAT
ENTICE DID, IT TOOK DATA AS
INPUT, IN OUR INSTANCE, SURVEY
DATA.
ATTACHED METADATA TO IT.
WOULD PROCESS BOTH POPULATION
LEVEL DATA AND INDIVIDUAL DATA
AND THEN MATCHED THAT AGAINST
OUR GRAPHICAL REPOSITORY TO
COME UP WITH THE INDIVIDUAL
RESULT OF IT.
SO AFTER WE CONTINUED THE WORK
OF WICER INTO SOME ADDITIONAL
AREAS, WE HAVE DONE A FAIR
AMOUNT OF WORK IN HISPANIC
DEMENTIA CARE GIVING USING SOME
OF THE PROCESSES THAT WE
LEARNED THROUGH THE WICER
PROJECT.
INITIALLY WHEN WE STARTED DOING
THIS, WE REALLY DID IT FROM, I
WOULD SAY VERY MUCH COMING AS
MY PERSPECTIVE AS A NURSE.
WE WANTED TO DO SOMETHING, WE
GOT OUR HANDS DIRTY.
WE DID THINGS PROBABLY A LITTLE
LESS EFFICIENTLY THAN WE CAN DO
THEM THESE DAYS.
BUT IT WAS VERY IMPORTANT TO
GET THAT BACK.
SO WE LEARNED A LOT OF METHODS
ABOUT HOW TO GO ABOUT THIS.
HOW TO AUTOMATE IT, HOW TO
EVALUATE IT THROUGH THE YEARS.
AND THE POINT OF THAT ENDS UP
BEING, AS WE WERE DOING THIS
TYPE OF VISUALIZATION WORK,
DEALING WITH A NUMBER OF
DIFFERENT PRIORITY PROBLEMS IN
OUR CLINIC, WE BEGAN THINKING
ABOUT THE IDEA OF CREATING A
TOOLBOX.
COULD WE CREATE A TOOLBOX THAT
OTHER PEOPLE COULD USE, RATHER
THAN JUST DOING THESE STUDIES
OURSELVES.
AND THE OPPORTUNITY TO DO THAT
REALLY CAME THROUGH THE NIH'S
RADXUP PROGRAM, RAPID
ACCELERATION OF DIAGNOSTICS FOR
UNSERVED POPULATION.
THROUGH THIS RADXUP GRANT WE
HAD THE OPPORTUNITY TO
IMPLEMENT EPISTEMIC JUSTICE
INFORMED APPROACHES TO ADDRESS
DISPARITIES IN COVID-19 TESTING
AND VACCINATION UPTAKE.
AND WE CALLED OUR PROJECT THE
REDIVIS TOOLBOX.
AS WE IMAGINED IT, WE HAD
LEARNED A LOT ABOUT
VISUALIZATIONS IN THE LAST
DECADE.
THE IDEA OF A TOOLBOX, IT WOULD
TAKE INPUT, THE INFORMATION
NEEDS OF THE COMMUNITY IS
OUTPUT.
AS WICER TAILORED INFOGRAPHICS
OR IT COULD HAPPEN AT
INDIVIDUAL OR BATCH OUTPUT.
IT WOULD HAVE THE TAILORING
CAPACITY.
WE WOULD HAVE THE DOCUMENTATION
INCLUDING METHODOLOGICAL GUIDES
ET CETERA.
TRYING TO GET A LOT OF WHAT WE
LEARNED INTO THE TOOLBOX.
AND AS WE WROTE THE GRANT, WE
REALLY THOUGHT ABOUT IT FROM
THE PERSPECTIVE OF THE USERS
COULD BE CLINICIANS, THEY COULD
BE HEALTHCARE ORGANIZATIONS.
THEY COULD BE COMMUNITY-BASED
ORGANIZATIONS.
OR THEY COULD BE RESEARCHERS.
BECAUSE THE NATURE OF THE COVID
RESPONSE IN NEW YORK CITY WAS
VERY, SO WAS COMMUNITY-BASED,
WE DECIDED TO ACTUALLY FOCUS
OUR ATTENTION ON THE USE CASE
OF COMMUNITY-BASED
ORGANIZATIONS.
AND REALLY THINKING ABOUT
DEVELOPING A TOOLBOX THAT WE
COULD PUT, GET INTO THE HANDS
OF THE COMMUNITY HEALTH WORKERS
THAT WERE SO IMPORTANT IN
GETTING OUR COMMUNITIES TESTED
AND VACCINATED DURING THE
PANDEMIC.
THE IDEA BEHIND THIS PARTICULAR
PROJECT, WE WANTED TO DECREASE
THE DISPARITIES USING
CULTURALLY CONGRUENT HEALTH
LITERATE INFOGRAPHICS TO MEET
INFORMATION, AND MOTIVATE
APPROPRIATE BEHAVIORS.
THIS WAS A VERY
INTERDISCIPLINARY AND
COLLABORATIVE PROJECT.
WE HAD MULTIPLE SCHOOLS AT
COLUMBIA INVOLVED.
IN ADDITION, IN OUR FIRST
RADXUP GRANT WAS IN HARLEM AND
WE WORKED WITH THE ASSOCIATION
TO BENEFIT CHILDREN AND INITIAL
FUNDING WAS REALLY FOCUSED
AROUND PRIMARILY FOCUSED ON
TESTING.
BUT WE HAD THE OPPORTUNITY TO
BEGIN TO ADDRESS VACCINATION
THERE AS WELL.
WE HAD AN ADDITIONAL
OPPORTUNITY TO GET SOME MORE
FUNDING.
AND WE DECIDED TO, FOR THE
FIRST TIME, TO INCORPORATE SOME
OTHER HEALTH DISPARATE
POPULATIONS IN NEW YORK CITY.
AND THAT WAS THINKING ABOUT
BANGLADESHI IMMIGRANTS AND
CHINESE IMMIGRANTS SO WE ENDED
UP WORKING WITH NEW YORK
UNIVERSITY, POPULATION HEALTH
AND MEDICINE AND SPECIFICALLY
WITH PROJECT NEW YORKER WHICH
FOCUSES ON THE BANGLADESHI
POPULATION AND CHINESE-AMERICAN
PLANNING COUNCIL IN THE WORK.
SO IN THIS -- I CAN SAY THAT
RADXUP WAS VERY SERIOUS ABOUT
COMMUNITY ENGAGEMENT.
AND SO, IT WAS A GREAT MATCH
FOR US, BECAUSE WE ARE VERY
SERIOUS ABOUT COMMUNITY
ENGAGEMENT.
SO OUR PROJECTS, AS OTHER
RADXUP PROJECTS REALLY STARTED
OUT WITH REALLY UNDERSTANDING
COMMUNITY NEEDS FOR US AND WE
MOVED TO PARTICIPATORY DESIGN
AND THEN DEVELOPING A TOOLBOX.
RADX-UP HAD COMMON DATA
ELEMENTS.
I WILL SHOW YOU WHAT SOME OF
THE COMMON DATA ELEMENTS WERE.
IN ADDITION TO RADXUP COMMON
DATA ELEMENTS WE COLLECTED
SUBJECTIVE HEALTH LITERACY AND
NUMERATOR RA SY.
THOSE WERE SPECIFIC TO OUR
PROJECT.
WE THOUGHT PARTICULARLY FOR
WHAT WE WERE TRYING TO DO THESE
WERE VERY IMPORTANT VARIABLES
FOR US.
AND THEN WE HAD A SUBSET OF
PEOPLE FOCUSED ON TRYING TO GET
COMMUNITY EXPERIENCES AND
BELIEFS ABOUT COVID-19 TESTING
AND VACCINE AND TRUSTED SOURCES
OF INFORMATION.
SO IN OUR REDIVIS PROJECT WE
HAD ABOUT 1,000 PARTICIPANTS.
WE STARTED IN WASHINGTON
HEIGHTS INNWOOD, THEY
PARTICIPATED IN BOTH
POPULATIONS PARTICIPATED IN
BOTH TESTING AND INVESTIGATION
INITIATIVES.
SO THEY ARE PREDOMINANT IN OUR
SAMPLE.
64% LATINO, 25% BLACK.
AND THEN 7% BANGLA AND CHINESE
THROUGH OUR TARGETED OUTREACH.
THE MAJORITY WERE WOMEN.
THESE PROJECTS OCCURRED OVER
ABOUT THREE YEARS AND DURING
THAT PERIOD OF TIME, AT LEAST
80% RECEIVED AT LEAST ONE
VACCINATION.
SO OUR SAMPLE THAT WAS BIASED
WAS BIASED IN THAT PARTICULAR
WAY.
ONE OF THE THINGS THAT WAS
REALLY NOTABLE WAS ALTHOUGH
PEOPLE SUBJECTED HEALTH
LITERACY WOULD INDICATE MOST
PEOPLE CONSIDERED THEMSELFS TO
BE HEALTH LITERATE 34% ANSWERED
THE NUMERACY QUESTION
INCORRECTLY, WHICH IS NUMBERS
REPRESENTS THE BIGGEST RISK OF
A DISEASE.
IF YOU COULD IMAGINE THIS WAS
REALLY IMPORTANT TO KNOW
BECAUSE WHEN YOU THINK ABOUT
ALL THE NUMBERS THROWN AROUND
ABOUT COVID, TERMS OF TESTING,
THINKING ABOUT ACCURACY OF
TEST, IN TERMS OF THE VACCINE,
RISKS OF GETTING A SIDE EFFECT
FROM THE VACCINE, VERSUS RISKS
OF COMPLICATIONS FROM COVID.
SO HAVING A THIRD OF OUR SAMPLE
AND WHEN I WAS FIRST SHARING
THIS DATA, WE DIDN'T YET HAVE
THE BANGLA AND THE CHINESE
INFORMATION INTEGRATED BUT THE
ACCURACY LEVEL IS THE SAME IN
THOSE POPULATIONS, POPULATIONS
AS WELL.
WE LOOKED AT IT FROM THE
PERSPECTIVE OF MOTIVATORS AND
HESITANCY CONCERNS, VERY MUCH
FOCUSED ON THE FAMILY THIS IS
NOT DIFFERENCE ACROSS THE
DEMOGRAPHICS OF POPULATIONS,
KEEPING THEMSELVES SAFE,
KEEPING THE COMMUNITY SAFE.
SO THESE WERE THINGS LIKE WE
COULD THINK OF IN TERMS OF
CRAFTING MESSAGES.
AND THEN KEY HESITANCY
CONCERNS, SIDE EFFECTS, OTHER.
DON'T KNOW HOW THE VACCINE
WORKS.
SO I'M SURE YOU HEARD MANY OF
THESE SAME CONCERNS.
IT WAS IMPORTANT, THE
QUALITATIVE WORK WAS
PARTICULARLY IMPORTANT WHEN WE
THINK OF HAVING 16% WHO SAID IT
WAS SOMETHING THAT WAS OTHER.
I WILL GET INTO THAT IN A
MOMENT.
WHEN WE LOOKED AT TRUSTED
SOURCES OF INFORMATION, THE
HEALTHCARE PROVIDER WAS THE
MOST TRUSTED SOURCE.
THIS WAS FOLLOWED BY FRIENDS
AND FAMILY, WHICH WAS ABOVE
GOVERNMENT NEWS, CORONA VIRUS
TASK ET CETERA.
I WAS PLEASED TO SEE SOCIAL
MEDIA WAS LAST IN THIS.
AS I MENTIONED, WE LEARNED A
LOT FROM THOSE SURVEY DATA FROM
ALMOST 1,000 PEOPLE.
BUT WE ALSO LEARNED SOME REALLY
IMPORTANT THINGS FROM OUR
INTERVIEWS WITH COMMUNITY
MEMBERS.
AND IT ACTUALLY WAS EASIER TO
RECRUIT FOR FOCUS GROUPS AND
INTERVENERS THAN IT WAS FOR THE
SURVEYS.
I THINK PEOPLE FELT SO
ISOLATED, THEY WANTED TO TALK
ABOUT THIS.
AND WHAT WERE THEIR THOUGHTS
AND WHAT THEY WERE WORRIED
ABOUT.
SO IT DID SHOW THE
MISUNDERSTANDING ABOUT HOW THE
VACCINE WORKS, PARTICULARLY THE
SPEED OF DEVELOPMENT.
SOMETHING THAT DIDN'T COME UP
IN THE SURVEY THAT WAS IN THE
OTHER WAS CERTAINLY WORRY ABOUT
LONG-TERM EFFECTS FOR SELF AND
OFFSPRING.
SO FOR EXAMPLE, LIKE THIS WAS,
WHILE WE EXPECTED THERE MIGHT
BE DIFFERENT CULTURAL CONCERNS,
IN OUR STUDY AGE SEEMED TO BE
THE PRIMARY DRIVER OF THIS
PARTICULAR CONCERN WITH PEOPLE
WHO WERE MUCH YOUNGER BEING
MORE CONCERNED ABOUT LONG-TERM
EFFECTS.
AND CERTAINLY FOR PEOPLE IN THE
CHILD-BEARING YEARS, PEOPLE WHO
WERE PREGNANT, PEOPLE WHO WERE
BREAST FEEDING.
AMONG THE BUDDHISTS THERE WAS
SOME CONCERN THE VACCINE
CONFLICTED WITH RELIGIOUS
BELIEF OF ONLY HAVING HEALTHY
THINGS IN YOUR BODY.
AND MANY PEOPLE STRONGLY FELT
THAT THERE WAS SARS-COV-2 IN
THE VACCINATION ITSELF.
THERE WAS ALSO A COUPLE OF
THINGS THAT CAME OUT ONLY IN
OUR HARLEM COMMUNITY.
AND THAT WAS THE NOTION OF
WAIT-AND-SEE.
WE HAD ALL THIS DATA COMING OUT
BUT IT WAS ON AVERAGE.
PEOPLE KIND OF LIKE, THAT IS ON
AVERAGE, BUT I WANT TO SEE
MYSELF MORE IN THE DATA.
I DON'T CARE THAT IF ON AVERAGE
THE SIDE EFFECT IS THIS.
WHAT IS THE SLIDE FOR PEOPLE
MORE IN MY DEMOGRAPHIC?
PRIORITIZATION OF PEOPLE OF
COLOR SEE FEAR OF RACIST
INTENTIONS.
THIS IS FROM ONE OF THE
INTERVIEWS, ARE WE THE GUINEA
PIGS?
WHITE PEOPLE USUALLY GET
EVERYTHING FIRST.
IN THE LAST COUPLE MONTHS I
HAVE BEEN RETURNING THIS DATA
IN THE HARLEM COMMUNITY.
THIS REALLY HAS BEEN REINFORCED
AND ONE OF THE REASONS THAT
LEARNED MORE IN RETURNING THIS
DATA IS SOME INDIVIDUALS
PARTICULARLY IN PUBLIC HOUSING
FELT LIKE THEY HAD GOTTEN
LIMITED RESOURCES FOR
PREVENTION SO THEN WHEN THE
VACCINE WAS BROADLY AVAILABLE,
THEY JUST WEREN'T SO SURE.
SO THE FEARS OF TUSKEGEE AND
THOSE THINGS ARE STILL ALIVE
AND WELL AND THINKING ABOUT
THIS FROM THE PERSPECTIVE OF
OUR COMMUNITY.
SO WHAT DID WE REALLY LEARN
ABOUT THIS THAT REALLY INFORMED
THE DESIGN OF THE INFOGRAPHICS,
THAT IT WAS IMPORTANT THAT WE
NEED TO ADDRESS DIFFERENT TYPES
OF TESTS.
THERE WERE CONCERNS AROUND THAT.
CLEARLY MAKING UNDERSTANDING
VACCINE MECHANISMS AND
PLATFORMS.
REALLY HAVE A WAY TO ADDRESS
KEY HESITANCY CONCERNS OF
SPECIFIC POPULATIONS.
FOR INSTANCE, SOMEONE OF
CHILDBEARING AGE HAD DIFFERENT
CONCERNS THAN SOMEONE WHO WAS
OLDER.
AND OTHER THINGS THAT WOULD BE
VERY IMPORTANT TO ALLOW
BRANDING FROM A TRUSTED SOURCE
IN THE COMMUNITY.
WE WANTED TO SUPPORT CULTURAL
CONGRUENCE, AND WE REALLY NEED
TO HAVE SOME GOOD OPTIONS FOR
COMMUNICATING PROPORTIONS
BECAUSE SO MANY OF THE, ONE
THIRD OF THAT POPULATION GOT
THE NUMERACY QUESTION WRONG.
WE WENT INTO OUR PARTICIPATORY
DESIGN PHASE.
WE USUALLY DO THAT IN TWO
PHASES.
WE DO A BROAD SURVEY JUST
TESTING OUT SOME INFOGRAPHIC
COMPONENTS.
WE ALL CAN REMEMBER THOSE DEEP
IF PHARYNGEAL SWABS.
TALKING ABOUT OUR PARTICULAR
TEST.
THEN WE FOLLOWED WITH THE
PARTICIPATORY DESIGN ITSELF.
THAT'S REALLY PULLING SOME OF
THE DIFFERENT INFOGRAPHICS,
SOME OF THE DIFFERENT ICONS AND
DESIGN IDEAS INTO A MORE
COHERENT STORY WE WORKSHOPED
TWO DIFFERENT APPROACHES GOING
WITH A DIFFERENT TEXTBOOK
APPROACH OR DIFFERENT
PERSONIFIED APPROACH.
I WAS PERSONALLY CONCERNED IF
WE WENT WITH PERSONIFIED THAT
PEOPLE MIGHT NOT TAKE IT
SERIOUSLY.
BUT AS WE WENT THROUGH THE
WORKSHOPING, IT WAS VERY CLEAR
THAT THE PERSONIFIED APPROACH
WAS WHAT PEOPLE FELT WOULD BE,
WOULD GET THE ATTENTION OF THE
COMMUNITY.
AND TO BE ABLE TO ELABORATION
LIKELIHOOD THEORY SAYS THE
FIRST THING YOU HAVE TO DO IS
GET SOMEBODY'S ATTENTION.
THEY CAN'T ATTEND TO IT IF IF
THEY CAN'T DO ANY ACTION AND
YOU CAN'T GET THE ATTENTION
FIRST.
WE ENDED UP GOING THROUGH THE
PARTICIPATORY DESIGN PROCESS
WITH THE VARIOUS COMMUNITIES.
AND THIS IS OUR COVID-19
VACCINE INFOGRAPHIC.
SO IT USES WHAT CONCEPTUAL
METAPHOR TEACHES, IT'S
IMPORTANT TO HAVE A METAPHOR
WHEN YOU ARE DOING
COMMUNICATION SO THE METAPHOR
FOR THIS WAS REALLY WAR.
SO YOU SEE THAT THROUGH SOME OF
THE DIFFERENT CHARACTERS.
YOU SEE THERE'S THE GOOD GUYS
HAVE LIGHT SABRES, THE
ANTIBODIES HAVE LIGHT SABRES TO
HELP FIGHT THE VIRUS AND THAT
KIND OF THING.
THIS IS THE STANDARD SET OF
INFORMATION AND THIS BUILDS ON
THE NEEDS WE SAW FROM THE
COMMUNITY, LACK OF
UNDERSTANDING ABOUT HOW THE
VIRUS MAKES YOU SICK AND HOW
THE VACCINE WORKS.
THEN AS FAR AS THE TAILORING
ASPECT, WE TOOK THE THINGS THAT
WE HEARD AND TURNED THEM INTO
DIFFERENT QUESTIONS WITH
DIFFERENT ICONS THAT GO ALONG
WITH THEM.
SO IN ADDITION TO HAVING THE
STANDARD INFORMATION, A
COMMUNITY HEALTH WORKER CAN
SELECT THE THINGS THAT ARE MOST
RELEVANT TO THE PERSON THAT
THEY ARE WORKING WITH.
TO HAVE THAT CREATE INDIVIDUAL
GRAPHIC FOR THEM.
WHERE WE ARE IN THIS, WE NEEDED
TO TAKE EVERYTHING WE LEARNED
AND TURN IT INTO A TOOLBOX THAT
OTHERS COULD USE.
YOU WILL NOTICE A NAME CHANGE
HERE.
IT TURNED OUT THAT THERE WAS
SOME SOFTWARE ALREADY CALLED
TAILOR-VIS TOOLBOX.
WE DIDN'T WANT TO GET ANY
CONFUSION WITH COPYRIGHT SO WE
CHANGED OUR TO TAILORVIS
TOOLBOX.
THIS IS WEB BASED SOFTWARE,
INDIVIDUALS CAN SIGN-IN AT THE
ORGANIZATIONAL LEVEL.
THEY HAVE A REPOSITORY OF
INFOGRAPHICKS.
THERE ARE DIFFERENT FUNCTIONS
AT THE ORGANIZATIONAL LEVEL AS
WELL AS INDIVIDUALS WITHIN THE
ORGANIZATIONAL.
THEY CAN SELECT A BASE
INFOGRAPHIC.
THEY CAN BRAND IT FROM THEIR
ORGANIZATION.
THE COMMUNITY-BASED
ORGANIZATIONS ARE THE ONE WHO'S
HAVE WORKED HARD TO HAVE THE
TRUST OF THE COMMUNITY.
THEY CAN ADD THEIR LOGO, THEY
CAN EDIT TEXT, AND OF COURSE
THEY CAN TAILOR IT TO
INDIVIDUAL NEEDS IN THE
INSTANCE OF THE INVESTIGATION.
WE HAVE THE INFOGRAPHICS AVAIL
ABLE IN FOUR LANGUAGES.
ENGLISH, SPANISH, BANGLA AND
SIMPLIFIED CHINESE.
HAVE IT BE SCALABLE TO OTHER
COMMUNITY NEEDS.
WE HAVE BEEN CAREFUL HOW WE
DEVELOPED THE SOFTWARE.
SO WE HAVE THE OPPORTUNITY TO
EXPAND TAILORVIS THROUGH IGNITE.
IT STANDS FOR INTERDISCIPLINARY
GUIDED NETWORK FOR
INVESTIGATION, TRANSLATION AND
EQUITY.
AND WHEN ONE OF THE IGNITE
ACTIVITIES IS TO HOST DIFFERENT
TYPES OF EXPERIENCE IN WHICH
INDIVIDUALS CAN INTERACT WITH
THE ALL OF US RESEARCHER WORK
BENCH AND THIS ACTIVITY IS THIS
GRANT, THE CONTACT P.I.'S MY
COLLEAGUE, ELIZABETH COHEN.
ONE OF THE THINGS THAT HAPPENS
IN THE DATA SANDBOX ACTIVITY IS
PEOPLE ARE TRAINED AND THEY DO
A NUMBER OF DIFFERENT
ACTIVITIES TO GAIN FAMILIARITY
WITH THE DATA.
THIS IS CUSTOMIZED TO THE GROUP
THAT THE SANDBOX IS BEING HELD
FOR SO ONE EXAMPLE IS THEY CAN
DO A TREASURE HUNT.
AND THIS WAY PEOPLE CAN SEARCH
FOR INFORMATION THAT MIGHT BE
PARTICULARLY USEFUL TO THEIR
PARTICULAR COMMUNITY.
SO HOW WE ARE WORKING WITH THE
PROGRAM IS ADDED THE TAILORVIS
TOOLBOX TO THE DATA SANDBOX.
SAY YOU COME FROM A
COMMUNITY-BASED ORGANIZATION
THAT IS SERVING THE LATINO
POPULATION, YOU WILL LEARN
THINGS ABOUT YOUR COMMUNITY AND
ABOUT THE POPULATION THROUGH
THE DISCOVERY ACTIVITY AS PART
OF THE TOOLBOX.
BUT THEN WE WILL HAVE PRE-BUILT
TEMPLATES OF INFOGRAPHICS SO
THAT AS ADDITIONAL ASPECT OF
RETURN TO COMMUNITY, THEY WILL
BE ABLE TO CREATE AN
INFOGRAPHIC THAT THEY CAN TAKE
INTO THEIR COMMUNITY FROM THEIR
COMMUNITY-BASED O.
ORGANIZATION.
I THINK OF THIS AS ANOTHER
EXAMPLE OF A STRATEGY TO
PERMEATE HERMENEUTICAL
INJUSTICE BECAUSE WE ARE
CREATING TOOLS AND RESOURCES
THAT CAN HELP PEOPLE MAKE MORE
SENSE OF THE DATA AND ALSO TO
MAKE ADDITIONAL USE OF IT IN
WAYS THAT ARE COMPREHENSIBLE
AND CULTURALLY CONGRUENT.
IN CONCLUDING, IT'S BEEN FUN
FOR ME TO SHARE MY REFLECTIONS
AND HOW I HAVE BEEN THINKING
ABOUT THIS, I'M ONE OF THOSE
PEOPLE WHO JUST LOVES A GOOD
FRAMEWORK AND BEING ABLE TO
REALLY THINK ABOUT THINGS
THROUGH DIFFERENT LENSES, SO
REALLY LOOKING AT THE ROLE OF
COMMUNITY ENGAGEMENT AND HEALTH
INFORMATICS AND DATA SCIENCE
INTERVENTION, MY PERSPECTIVE IS
THAT THIS REALLY SUGGESTS A
COUPLE OF OF NEEDS IS ONE, WE
REALLY NEED TO BROADEN
DIVERSITY OF INPUT INCLUSIVE OF
LIVED EXPERIENCE, IN THE
CREATION AND IMPLEMENTATION OF
DATASETS ALGORITHMS AND HEALTH
INFORMATICS.
WE NEED TO THINK OF WHOSE
VOICES ARE BEING SILENCED OR
MISSING WHICH COULD ADD BIASES
AND ALSO FAIL TO REALLY ADVANCE
HEALTH EQUITY, WE ALSO NEED TO
DEVELOP DIFFERENT TYPES OF
STRATEGIES AND TOOLS THAT
FACILITATE COMMUNITY,
DETERMINATION AND
PRIORITIZATION OF
HEALTH-RELATED NEEDS AND THE
KINDS OF RESOURCES THAT ARE
NEEDED TO MEET THOSE NEEDS.
WE ALSO NEED TO THINK ABOUT
STRATEGIES AND TOOLS THAT
INCREASE COMMUNITY CAPACITY FOR
CO-PRODUCTION, TRANSLATION AND
DISSEMINATION OF INFORMATION
AND KNOWLEDGE.
I SPENT TIME, I WAS THE
ANNOYING AUDIENCE MEMBER WHO
WOULD ASK ALMOST THE SAME
QUESTION EVERY PANEL, WHICH
WAS, DOES THE COMMUNITY HAVE
THE DATA THEY NEED?
WHAT TYPE OF TOOLS WOULD THEY
NEED TO BE ABLE TO ENGAGE MORE
AS WE THINK ABOUT INTERVENTIONS
TO MAKE THE COMMUNITY MORE SAFE
AND ONE OF THE OTHER PLACES I'M
GOING WITH MY OWN WORK WITH THE
TOOLBOX IS REALLY IN THE AREA
OF PREVENTION AND FIREARM
INJURY.
SO IN ADDITION TO THINKING
ABOUT THAT DIVERSITY OF INPUT
AND STRATEGIES AND TOOLS IT'S
IMPORTANT WE DESIGN OR DEVELOP
SCIENCE FRAMEWORKS THAT SUPPORT
THE EPISTEMIC JUSTICE.
I'M EXCITED ABOUT THE WORK THE
WORKING GROUP IS DOING FROM THE
NEXT TRACK.
COMMITTEE AND ALSO TIED TO THE
DIRECTOR'S ADVISORY COMMITTEE
BECAUSE IT'S POTENTIAL TO
REALLY ADVANCE A SCIENCE POLICY
FRAMEWORK THAT WOULD SUPPORT
EPISTEMIC JUSTICE.
WITH THAT, SOME
ACKNOWLEDGMENTS, FUNDING, THE
IMPORTANCE OF THE COMMUNITY
PARTNERS, THE EXPERTS BOTH IN
VISUALIZATION AND CULTURE THAT
HAVE BEEN REFLECTED IN THE WORK
I'VE SHARED TODAY.
AND WITH THAT, I THINK WE CAN
GO TO DR. RESNICK WHO IS GOING
TO FACILITATE THE DISCUSSION.
>> Jeffrey Reznick: THANK YOU,
DR. BAKKEN VERY MUCH FOR THAT
PRESENTATION, VERY
THOUGHT-PROVOKING AND IMPORTANT.
WE HAVE A COUPLE QUESTIONS.
CAN YOU SPEAK TO HOW THESE
IDEAS PLAY OUT IN TERMS OF
PUBLISHING.
THE PUBLISHING ECOSYSTEM.
THANK YOU.
>> Suzanne Bakken: THANKS, I
REALLY APPRECIATE THE
OPPORTUNITY TO SAY SOMETHING
ABOUT THAT.
I AM THE EDITOR AND CHIEF OF
THE JOURNAL OF THE AMERICAN
MEDICAL INFORMATIC'S
ASSOCIATION.
I RECENTLY HAD THE OPPORTUNITY
TO REALLY THINK ABOUT THIS FROM
THE PERSPECTIVE OF THE JOURNAL.
AND WE SPENT TIMES THINKING, WE
HAD DONE A LOT OF PUBLICATION
IN OUR JOURNAL ABOUT HEALTH
EQUITY BUT I HAVE, EXPLICITLY
MADE IT A NEW GOAL FOR THE
JOURNAL MOVING FORWARD AND IT
WILL BE IN OUR JANUARY 1st
EDITORIAL.
WE TRACE THE PREVIOUS EDITOR'S
AND CHIEF OF AMIA AND I DID A
HISTORICAL LOOK AND SAW OUR
INITIAL GOALS WERE GOOD BUT WE
NEEDED AN ADDITIONAL GOAL
MOVING FORWARD.
AND HOW THIS MIGHT PLAY OUT IS
REALLY THINKING ABOUT SOME OF
THE CONCEPTS THAT CAME UP IN
THAT LANCET PUBLIC HEALTH
PUBLICATION.
THINKING ABOUT, THAT CAME UP
WAS A LOT ABOUT NORTH-SOUTH
RELATIONSHIPS AND THE
IMPORTANCE OF WHERE YOU ARE IN
THE AUTHOR'S LIST AND ALWAYS
HAVING THE NORTH SCIENTIST
MAYBE BEING DOMINANT AND MAYBE
NOT RECOGNIZING THE IMPORTANCE
OF CONTEXTUAL KNOWLEDGE.
SOME OF THESE IDEAS THE
IMPORTANCE AND VALUE OF LOCAL
KNOWLEDGE CAME UP A LOT THE
LAST COUPLE DAYS IN THE
COMMUNITY SAFETY WORKSHOP.
IT'S NOT BECAUSE PEOPLE ARE
SAYING YES, SCIENCE MOVES
THROUGH GENERALIZABLE KNOWLEDGE.
BUT WHEN WE ARE MOVING THINGS
IN A COMMUNITY WE REALLY HAVE
TO PAY ATTENTION TO THAT LOCAL
KNOWLEDGE.
SO IN PUBLICATION THINKING
ABOUT HOW DO WE VALUE THAT
GENERALIZABLE KNOWLEDGE, VERSUS
HAVING INPUT OF THE
CONTEXTUALIZED KNOWLEDGE THAT
IS SO IMPORTANT FOR THE
APPLICATION OF SCIENCE IN
PRACTICE.
WHAT ARE THE DIFFERENT WAYS OF
KNOWING AND HOW DO THEY GET
INTEGRATED INTO A PUBLICATION
AND ACKNOWLEDGED IN AUTHORSHIP?
>> Jeffrey Reznick: THANK YOU,
VERY MUCH.
A RELATED QUESTION HAS COME IN.
CAN YOU SPEAK ALSO TO HOW THESE
IDEAS PLAY OUT IN TERMS OF THE
PROFESSIONAL TRAINING ECOSYSTEM.
>> Suzanne Bakken: YEAH, I
THINK THIS IS INCREDIBLY
IMPORTANT.
AND I THINK THESE IDEAS ARE NOT
BROADLY INCORPORATED INTO
TRAINING PROGRAMS IN HEALTH
INFORMATICS, BIOMEDICAL AND
DATA SCIENCE.
I REALLY THOUGHT ABOUT IT A LOT
IN THE CLASSES THAT I TEACH AT
COLUMBIA.
SO WE DO INTEGRATE THESE
NOTIONS.
AND SO, TRAINING PROGRAMS ARE
CLEARLY ADDRESSING THINGS SUCH
AS ALGORHYTHMIC FAIRNESS AND
BIAS.
THERE'S NO DOUBT THAT KIND OF
THING IS THERE.
BUT I THINK MORE BROADLY,
REALLY THINK ABOUT THAT NOTION
OF WHO IS MISSING, SILENCING
THE VOICES AND REALLY THINKING
ABOUT IT FROM RECOGNIZING A
PERSON'S CAPACITY AS A KNOWER.
SO I THINK THE IDEAS ARE NOT
WIDELY INTEGRATED AT THE MOMENT.
BUT I THINK IT'S A IMPORTANT
LENS THAT OUR FIELD CAN APPLY
TO LOOK AT TRAINING AS WELL.
>> Jeffrey Reznick: THANK YOU,
DR. BAKKEN.
ANOTHER QUESTION, IN YOUR
COMMUNITY CONVERSATIONS ABOUT
COMMUNITY CONCERNS AND POINTING
TO SOCIAL DETERMINANTS OF
HEALTH, TO WHAT EXTENT DID
LOCAL HISTORY AND EXPERIENCE
PLAY A PART IN THESE
CONVERSATIONS?
>> Suzanne Bakken: YEAH, IT
DEFINITELY COMES UP.
AND ONE OF THE THINGS I WAS
WONDERING IF WE WOULD SEE, WE
HEAR A LOT ABOUT THE ACADEMIA
VERSUS THE COMMUNITY
PERSPECTIVE, WE ACTUALLY DIDN'T
UHERO AS MUCH ABOUT COLUMBIA OR
XYZ DID THIS IN THE PAST.
THE PEOPLE IN OUR SAMPLE HAD A
HIGH TRUST OF HEALTHCARE
PROVIDERS, INCLUDING OUR LOCAL
INSTITUTIONS BUT DEFINITELY
KIND OF HISTORIC ATROCITIES
CAME UP PREDOMINANTLY MORE IN
HARLEM THAN IN WASHINGTON
HEIGHTS AND WITH THE BANGLA AND
CHINESE POPULATIONS.
>> Jeffrey Reznick: THANK YOU.
ANOTHER QUESTION, WHAT ARE YOUR
THOUGHTS OF DISSEMINATION
THROUGH NLM'S MEDLINE PLUS AND
CONNECTING TO PATIENT PORTALS
VIA MEDLINE PLUS CONNECT?
>> Suzanne Bakken: ABSOLUTELY.
I'VE HAD THE OPPORTUNITY TO
SERVE ON THE, IN ADDITION TO
SERVING ON THE LIST SERVE HELP,
OR SCIENTIFIC COUNSELORS I ALSO
HAD THE OPPORTUNITY TO A
MEMBER OF THE BOARD OF REGENTS.
THERE'S DEFINITELY BEEN
CONVERSATIONS I'VE HAD OR MAYBE
WHEN I WAS ON THE NLM STRATEGIC
PLANNING GROUP.
MY IDEA WAS THAT EVERY PAPER
SHOULD HAVE AN INFOGRAPHIC THAT
WOULD BE VERY ACCESSIBLE TO
PEOPLE WITH DIFFERING LEVELS OF
HEALTH LITERACY AND THAT WOULD
GO, AND THAT WOULD BE ATTACHED
IN PUBMED BECAUSE I THINK IT'S
IMPORTANT.
MANY JOURNAL PUBLISHING IS
CERTAINLY SOMETHING THAT'S
MOVED TO MANY JOURNALS
REQUESTING A TYPE OF
INFOGRAPHIC, EITHER AS A
GRAPHICAL ABSTRACT OR CENTRAL
COMMUNICATION.
NOT ALL OF THEM ARE NECESSARILY
FOCUSED WITH THINKING ABOUT
THE, YOU KNOW, THE PUBLIC
AUDIENCE.
BUT I THINK THIS IS VERY
CONSISTENT WITH NLM'S MISSION
WHAT I'VE LEARNED THROUGH THE
STRATEGIC PLANNING PROCESS AS
WELL AS OTHER THINGS IS NLM
ENGENDERS A LOT OF BROAD TRUST
BECAUSE OF THE PUBMED RESOURCE.
SO ANYTHING THAT WE CAN DO TO
COMBAT MISINFORMATION, ADVANCE
TRUST IN SCIENCE TO ATTACHING
THINGS THAT ARE MORE BROADLY
UNDERSTOOD AS PART OF PUBMED IS
A GOOD THING IN CONTINUING TO
PROMOTE THAT TRUST.
>> Jeffrey Reznick: ABSOLUTELY
AGREE.
OF COURSE.
ANOTHER QUESTION WE HAVE.
THIS INDIVIDUAL WRITES I'M
INTRIGUED BY THE SUCCESSFUL
INFOGRAPHIC ABOUT HIGH BLOOD
PRESSURE.
COULD YOU SAY MORE ABOUT
EFFECTIVENESS OR IMPACT ABOUT
THIS KIND OF OUTREACH OR
RETURNING INDIVIDUAL RESULTS ON
IMPROVING HEALTH IN THE
COMMUNITY.
ARE THERE SPECIFIC METRICS, ET
CETERA, THAT YOU USED OR ARE
THINKING ABOUT USING?
>> Suzanne Bakken: YES, FOR
MANY OF THE THINGS.
I'M GOING TO TALK ABOUT WHERE
IS THE FOCUS OF OUR SCIENCE AND
OUR INNOVATION AND IT'S AROUND
THE DEVELOPMENT OF THE TOOLS
AND THEN WE COLLABORATE WITH
OTHER RESEARCHERS WHO USE OUR
RESOURCES TO DO THE STUDIES.
THAT WOULD LOOK AT THE
EFFECTIVENESS.
SO I CAN TALK ABOUT A COUPLE, I
CAN TALK ABOUT A COUPLE IN
GENERAL.
SOMEONE HAS USED THE BLOOD
PRESSURE INFOGRAPHIC HAS BEEN
USED BY A NEUROLOGIST, STRUT?
(?) NEUROLOGIST AT COLUMBIA IN
A STUDY AND HAS SHOWN
POST-STROKE, USED IT IN POST
STROKE AND THEY HAVE SHOWN A
DROP IN BLOOD PRESSURE.
SO THAT'S AN EXAMPLE OF THE
BLOOD PRESSURE.
ONE OF OUR POSTDOCS HAS DONE A,
SAMANTHA STONE BREAKER WHO IS
AN ASSISTANT PROFESSOR AT THE
UNIVERSITY OF COLORADO, HAS
BEEN WORKING FOR ABOUT A DECADE
ON DOING INFOGRAPHICS IN HIV,
DESIGNED SPECIFICALLY FOR
PATIENT PROVIDER COMMUNICATION.
AND SHE HAS EVIDENCE IN HER
STUDY THAT SHE WAS ACTUALLY
ABLE TO SHOW A DECREASED IN
VIRAL LOAD AS THE RESULT OF THE
COMMUNICATION INTERVENTION THAT
INCLUDED THE INFOGRAPHICKS.
SO THE ANSWER IS WE DON'T KNOW
THE EFFECTIVENESS OF EACH OF
THESE THINGS, BUT WE MAKE OUR
TOOLS AVAILABLE TO RESEARCHERS
WHO WANT TO DO THOSE TYPES OF
STUDIES WITH THEM.
>> Jeffrey Reznick: HOW ARE THE
TEXTS IN THEM COMPOSED AND HOW
ARE THE ILLUSTRATIONS CONCEIVED?
>> Suzanne Bakken: YES AND SO,
WE HAVE USED DIFFERENT
STRATEGIES THROUGH THE YEARS.
WE, I CONSIDER OUR APPROACH TO
BE A HYBRID APPROACH.
WE START WITH A DESIGN BRIEF
AND WHAT THE PURPOSE OF THE
COMMUNICATION AND YOU KNOW, DO
AN ENVIRONMENTAL SCAN, WHAT IS
OUT THERE.
ABOUT THE CONCEPTUAL METAPHOR
THAT MIGHT BE APPROPRIATE.
SO WE USUALLY GO TO THE
COMMUNITY WITH AT LEAST SOME
GENERAL IDEAS.
IN THE EARLY DAYS WE USED, AND
THEN WE CO-PRODUCED.
IN THE EARLY DAYS IN WICER WE
DID IN-HOUSE, DOCTORAL
STUDENTS, POSTDOCS, ET, ET
CETERA, THE MEMBERS OF OUR TEAM
DID ALL THE INFOGRAPHICS
OURSELVES.
AND THEN AFTERWARDS WE HAD
SPECIFICALLY AN URBAN LATINO
GRAPHIC DESIGNER KIND OF WORK
ON THE DESIGNS AFTERWARDS TO
MAKE THEM MORE CULTURALLY
APPROPRIATE.
OURS WERE MUCH LESS VIBRANT
COLORS SO WE WORKED WITH THE
DESIGNER AFTERWARDS.
SINCE THEN, WE CONSISTENTLY
WORK WITH A GRAPHIC DESIGNER,
IN SOME INSTANCES LIKE SAM
STONE BREAKER'S WORK, SHE HAD
THE GRAPHIC DESIGNER AS PART OF
THE NEEDS SO THE GRAPHIC
DESIGNER CAN WORK ON THE FLY
AND SAY, HOW ABOUT THIS?
IN OTHER INSTANCES WE, ADRIANA
ARCIA, WHO IS THE CREATIVE
PERSON BEHIND THIS, SHE WORKS
EXPLICITLY, HAS WORKED
LONG-TERM WITH A DIFFERENT SET
OF GRAPHIC DESIGNERS WHO HELP
THE DESIGNS COME TO LIFE.
IT'S VARIED OVER TIME BUT WE
ALWAYS INCLUDE A GRAPHIC
DESIGNER.
>> Jeffrey Reznick: DR. BAKKEN
MENTIONED WORK WITH THIS
COMMUNITY AND CAN SHARE
EXAMPLES AND THIS INDIVIDUALS
WRITES AND THANK YOU VERY MUCH
FOR YOUR LECTURE.
DR. BAKKEN, WE HAVE TIME FOR
ONE MORE QUESTION.
THAT IS WHAT ADVICE WOULD YOU
HAVE FOR OTHER COMMUNITIES AND
OTHER MEDICAL CENTERS FOR
REPLICATING THIS GREAT SUCCESS
IN YOUR COMMUNITY, WHAT ADVICE
DO YOU HAVE?
WHAT GUIDANCE WOULD YOU OFFER
THEM?
>> Suzanne Bakken: YOU KNOW, I
THINK, YOU KNOW, IT'S CLEAR
THAT INSTITUTIONS HAVE TO GET
READY TO DO THIS.
THE FUNDING AGENCIES ARE VERY
FOCUSED, MORE INCREASINGLY
FOCUSED ON COMMUNITY ENGAGEMENT.
AND INSTITUTIONS NEED TO HAVE
THE RESOURCES TO HELP
RESEARCHERS THAT DO THIS.
AND ONE OF THE OUTPUTS OF OUR
NEXT TRACK ENGAGED WORKING
GROUP IS TO REALLY PRODUCE NOT
ONLY A FRAMEWORK, BUT HOPEFULLY
A TOOLBOX THAT WILL HELP
INSTITUTIONS BE ABLE TO DO THIS
BETTER.
SO NOT EVERY RESEARCHER NEEDS
TO KNOW HOW TO DO THIS BUT AN
INSTITUTION MUST HAVE
RESEARCHERS AND THE
INSTITUTIONAL RESOURCES THAT
MAKE IT POSSIBLE FOR ALL
RESEARCHERS TO BE ABLE TO MEET
THIS GOAL OF MITIGATING AT THE
SYSTEMIC INJUSTICE.
>> Jeffrey Reznick: THANK YOU,
DR. BAKKEN, VERY MUCH.
I WOULD LIKE TO TAKE THIS
OPPORTUNITY TO THANK YOU,
AGAIN, ON BEHALF OF THE
NATIONAL LIBRARY OF MEDICINE
AND CERTAINLY IN COOPERATION
WITH NLM ACTING DIRECTOR, STEVE
SHERRY, GLENN CAMPBELL FROM OF
THE FRIENDS OF THE NATIONAL
LIBRARY OF MEDICINE AND
GRETCHEN JACKSON FROM AMIA FOR
A FANTASTIC LECTURE,
THOUGHT-PROVOKING, IMPORTANT
AND WE ARE PRIVILEGED TO HOST
YOU THIS MORNING.
AND ALSO TO SAY THAT YOUR
LECTURE WILL BE AVAILABLE IN
THE NIH VIDEOCAST ARCHIVE IN A
FEW DAYS.
SO THAT MANY, MANY MORE PEOPLE
CAN APPRECIATE THE WORK YOU
PRESENTED ON THIS OCCASION,
WHICH HAS BEEN A PRIVILEGE.
THE ANNUAL LINDBERG KING
LECTURE CO-SPONSORED BY NLM,
NMLM AND AMIA.
DR. BAKKEN, THANK YOU VERY
MUCH, IT'S BEEN A PRIVILEGE AND
PLEASURE.
HAVE A GOOD DAY, AND FOR ALL OF
YOU WHO TUNED IN THIS MORNING,
I BID YOU FAREWELL AND A
WONDERFUL DAY, WONDERFUL
WEEKEND AND CERTAINLY A HAPPY
AND HEALTHY HOLIDAY SEASON.
THANK YOU, BYE-BYE.
THANK YOU
FOR HAVING ME.