>> I AM RE-INTRODUCING MYSELF
FROM YESTERDAY, SHEILA
RAJAGOPAL.
I AM THE SESSION CHAIR TODAY FOR
THE UPCOMING SESSION THIS
MORNING.
ONE QUESTION FOR THE AUDIENCE
MEMBERS WHO ARE HERE THIS
MORNING, VERY MUCH APPRECIATE
IT, HOW MANY OF YOU ALL DO WORK
EITHER IN ADVOCACY OR RESEARCH
THAT'S RELATED TO GLOBAL HEALTH?
RAISE YOUR HAND.
OKAY, GOOD!
THAT'S MORE THAN I WAS EXPECTING
BUT STILL NOT AS MANY AS WE
WOULD LIKE TO SEE WHEN WE GET
SUCH A MIX OF PEOPLE INTERESTED
IN WORKING ON DISPARITIES IN
DIFFERENT WAYS.
SO IT IS MY PLEASURE TO
INTRODUCE DR. GOPAL JOINING US
FROM OUR CONFERENCE ON GLOBAL
HEALTH THAT'S ALSO TAKING PLACE.
WE VERY MUCH APPRECIATE HIS
TIME.
HE'S THE DIRECTOR FOR THE CENTER
OF GLOBAL HEALTH HERE AT THE
NCI.
AND HE'LL BE TALKING TO US
TODAY.
VERY MUCH APPRECIATE IT.
THANK YOU SO MUCH.
[APPLAUSE]
>>THANK YOU SO MUCH, SHEILA,
AND THANKS FOR HAVING ME.
JUST BRIEFLY FOR THE AUDIENCE,
THE ONES WHO ARE HERE IN PERSON,
THEY HAVE THE MICROPHONES TO ASK
THE QUESTION.
FOR THOSE JOINING US VIRTUALLY,
YOU CAN SUBMIT THE QUESTIONS
WITH SLIDO AND INSTRUCTIONS ARE
ON THE WEBSITE.
THANK YOU.
>>GREAT.
WELL, THANKS SO MUCH FOR HAVING
ME.
MY NAME IS SATISH GOPAL, I
DIRECT THE CENTER FOR GLOBAL
HEALTH AT THE NATIONAL CANCER
INSTITUTE IN THE U.S.
AND I'M REALLY PLEASED IN THIS
SESSION TO TRY TO OFFER A BIT OF
A GLOBAL PERSPECTIVE ON WHAT I
UNDERSTAND AND APPRECIATE IS A
LARGELY DOMESTICALLY ORIENTED
DISPARITIES MEETING.
STEPHAN STEFAN AND I HAVE ALREAY
DISCUSSED HOW WE INTEND TO
CHANGE THAT NEXT YEAR.
IF YOU'LL INDULGE ME, I JUST
WANTED TO DO ONE SLIDE ON CANCER
BURDEN GLOBALLY, JUST FOR
CONTEXT, AGAIN, APPRECIATING
THIS IS A LARGELY DOMESTICALLY
ORIENTED MEETING BUT I THINK AS
IS FAMILIAR TO ALL OF YOU,
GLOBAL CANCER DEATHS ARE
INCREASING RAPIDLY, AND
APPROXIMATELY 70% OF THESE WILL
OCCUR IN LOW AND MIDDLE INCOME
COUNTRIES BY 2040.
THESE ARE DATA FROM OUR
COLLEAGUES AT THE INTERNATIONAL
AGENCY FOR RESEARCH ON CANCER OR
IARC TO CLASSIFY CANCER BURDEN
IN 2020.
THESE ARE DEATHS SHOWN IN THE
OPEN CIRCLES AT THE BOTTOM AND
THEN PROJECTED DEATHS SHOWN IN
THE COLORED -- IN THE SOLID
CIRCLES AT THE TOP WITH
COUNTRIES CLASSIFIED BASED ON
THEIR HUMAN DEVELOPMENT INDEX
CATEGORY OR HDI.
AND GENERALLY SPEAKING, THE
THREE CATEGORIES SHOWN IN THE
BOX CORRESPOND WITH THE WORLD
BANK CLASSIFICATIONS WITH
LMICs.
THE THING I LIKE TO POINT OUT --
SO WHAT YOU'LL SEE HERE IS THAT
MOST CANCER WORLDWIDE OCCURS
TODAY IN LOW AND MIDDLE INCOME
COUNTRIES AND THIS WILL BECOME
INCREASINGLY TRUE GOING FORWARD,
AND THAT THE LARGEST
PROPORTIONAL INCREASES IN CANCER
BURDEN WILL OCCUR IN THE LOWEST
INCOME COUNTRIES.
SO FOR EXAMPLE, THE LOWEST HD
I-CAT GRI WILL SEE A NEAR
DOUBLING OF CANCER DEATHS
BETWEEN 2020 AND 2040.
EVEN -- AND THIS IS OCCURRING
OBVIOUSLY IN HEALTH SYSTEMS THAT
ARE ALREADY OVERSTRETCHED, AND
FACING MANY COMPETING HEALTH
PRIORITIES, INCLUDING A
CONTINUING LARGE BURDEN OF
COMMUNICABLE DISEASES.
THE OTHER POINT I ALWAYS LIKE TO
MAKE, AND I WON'T BELABOR THIS
AS I SOMETIMES DO IN TALKS, IS
THAT THIS IF ANYTHING, I THINK,
IS AN UNDERESTIMATE.
THAT IS, WHEN IARC PROJECTS
FORWARD TO 2040, THEY LOCK IN
CURRENT AGE STANDARDIZED RATES
AND THEN PROJECT THOSE FORWARD
ON TO ANTICIPATED GROWTH AND
AGING OF POPULATIONS WORLD WILD.
WORLDWIDE
SO THESE REALLY REFLECT
DEMOGRAPHIC CHANGES GLOBALLY.
WE KNOW SAN KER RATES ARE
DIFFERENTIALLY CHANGING AROUND
THE WORLD.
WE IN THE U.S. AND OTHER HIGH
INCOME COUNTRIES HAVE ENJOYED
GENERALLY DECLINING AGE-SPECIFIC
CANCER INCIDENCE AND MORTALITY
RATES IN RECENT YEARS AND AS YOU
KNOW, THE REIGNITED CANCER
MOONSHOT HAS NOW CALLED ON US TO
FURTHER ACCELERATE THAT PROGRESS
TOWARDS A 50% REDUCTION OVER THE
NEXT 25 YEARS.
THAT IS NOT OCCURRING.
IT'S ACTUALLY THE CONVERSE IN
MOST LOW INCOME COUNTRIES, WHERE
THEY'RE SEEING INCREASES IN THE
AGE STANDARDIZED CANCER
INCIDENCE AND MORTALITY RATE.
SO IF YOU APPLY DIFFERENTIALLY
CHANGING RATES AROUND THE WORLD
ON TO THESE ANTICIPATED
DEMOGRAPHIC CHANGES, I THINK IF
ANYTHING, LMICs WILL BEAR AN
EVEN LARGER BURDEN OF CANCER
BURDEN GOING FORWARD.
AT THE BOTTOM, I'VE JUST
ILLUSTRATED, THIS IS NOT TO
ARGUE THAT CANCER IS MORE
IMPORTANT THAN COVID, BUT WHAT
THIS TRANSLATES TO IN 2020 IS
APPROXIMATELY 27,000 REGISTERED
GLOBAL CANCER DEATHS PER DAY, AS
COMPARED WITH, ACCORDING TO DATA
THAT I PULLED DOWN FROM THE
INSTITUTE FOR HEALTH MATRIX AND
EVALUATION YESTERDAY ABOUT 6,800
GLOBAL COVID DEATHS PER DAY
REPORTED CURRENTLY.
THIS NUMBER HAS GONE UP RECENTLY
OVER THE LAST SEVERAL MONTHS,
LARGELY DUE TO THE INCREASED
CASE COUNTS IN CHINA.
IT WAS QUITE A BIT LOWER SEVERAL
MONTHS AGO.
SO NOT TO ARGUE THAT CANCER IS
MORE IMPORTANT THAN COVID BUT
CANCER DOESN'T TEND TO ATTRACT
THE KIND OF POLITICAL
ATTENTION/URGENCY THAT COVID
DOES, ESPECIALLY GLOBALLY, GIVEN
THAT THIS IS A PUBLIC HEALTH
EMERGENCY THAT IS DEVELOPING
OVER YEARS IF NOT DECADES.
SO THAT'S IT FOR BURDEN.
THEN I WOULD LIKE TO TALK A
LITTLE ABOUT CANCER RESEARCH,
AND AGAIN, THIS IS A POINT THAT
I OFTEN BELABOR OVER MANY SLIDES
BUT I WON'T DO THAT TODAY JUST
IN THE INTEREST OF TIME.
BUT IF CANCER BURDEN IS GOING TO
INCREASINGLY LIE IN LOW AND
MIDDLE INCOME COUNTRIES GOING
FORWARD, HOW GOOD HAVE WE BEEN
AS A CANCER RESEARCH COMMUNITY
IN ADDRESSING THAT PROBLEM?
NOT SURPRISINGLY, THE ANSWER
CERTAINLY IN MY VIEW IS NOT VERY
GOOD, AND THIS IS JUST ONE
ILLUSTRATION OF THAT.
SO THIS IS A REALLY NICE PAPER
FOR THOSE OF YOU WHO ARE
INTERESTED.
THESE AUTHORS SYSTEMATICALLY
REVIEWED ALL ONCOLOGY RANDOMIZED
CONTROL TRIALS PUBLISHED BETWEEN
2014 AND 2017.
THESE WERE ENGLISH LANGUAGE
REPORTS OF PHASE THREE STUDIES
TESTING ANY CANCER DIRECTED
THERAPY.
THERE WERE NEARLY 700 SUCH
STUDIES, OF WHICH 8% WERE IN LOW
AND MIDDLE INCOME COUNTRIES.
SO AT LEAST 70% OF CANCER BURDEN
AND 8% OF ONCOLOGY RANDOMIZED
CONTROL TRIALS.
51 OF THESE WERE IN UPPER MIDDLE
INCOME COUNTRIES.
THE VAST MAJORITY WERE IN CHINA.
SEVEN WERE IN LOW MIDDLE INCOME
COUNTRIES, THE VAST MA JORTD IN
INDIA AND THERE WERE NO
RANDOMIZED CONTROLS FOR CANCER
FOR THIS PERIOD CONDUCTED IN A
WORLD BANK CLASSIFIED LOW INCOME
COUNTRY.
AND SO THIS IS LIKE RESEARCH
101, RIGHT?
A BIASED SAMPLE GIVES YOU BIASED
RESULTS.
I THINK THE BODY OF COLLECTED
KNOWLEDGE RESULTING FROM OUR
CANCER RCTs ARE BIASED IN
SEVERAL IMPORTANT WAYS.
AND THAT'S IMPORTANT TO
ACKNOWLEDGE.
THEY'RE POORLY MATCHED TO GLOBAL
CANCER BURDEN.
THESE AUTHORS FOUND THAT THE
RCTs THAT WERE CONDUCTED IN
LOW AND MIDDLE INCOME COUNTRIES
ACTUALLY MORE FREQUENTLY
IDENTIFIED EFFECTIVE THERAPIES
WITH LARGER EFFECT SIZES.
PERHAPS DESPITE BEING A BETTER
MATCH FOR GLOBAL CANCER BURDEN
AND THERAPIES WITH LARGER EFFECT
SIZE, THEY WERE GENERALLY
PUBLISHED IN THE LOWEST IMPACT
ONCOLOGY JOURNALS, I THINK
SUGGESTING SOME REAL PUBLICATION
BIAS THAT EXISTS.
THIS IS JUST A FIGURE FROM THE
PAPER SHOWING TOP 10 CANCERS
GLOBALLY BY MORTALITY AND THEN
THE TOP 10 CANCERS BY RCTs.
FOR SOME PEOPLE IN AN IDEAL
WORLD, THERE WOULD BE A DIRECT
CORRELATION HERE, BUT ONE CAN
SEE THAT THERE REALLY ISN'T.
AND PARTICULARLY FOR SOME OF THE
CANCERS THAT OCCUR MOST
FREQUENTLY IN LOW AND MIDDLE
INCOME COUNTRIES, FOR EXAMPLE,
LIVER CANCER, CERVICAL CANCER,
THEY ARE VERY INFREQUENTLY
REPRESENTED IN ONCOLOGY RCTs.
SO I THINK THIS IS A REAL
CHALLENGE TO ALL OF US TO THINK
ABOUT HOW MEANINGFULLY WE WANT
TO ADDRESS THIS GOING FORWARD.
SO THAT'S BURDEN, THEN SOME OF
WHAT I CONSIDER TO BE THE
INADEQUACY OF THE RESEARCH
RESPONSE TO DATE.
SO THIS IS A DISPARITIES MEETING
AND I'M REALLY GRATEFUL TO BE
HERE BECAUSE WE HAVE BEEN
THINKING QUITE A LOT ABOUT WHAT
IS THE RELATIONSHIP BETWEEN
HEALTH DISPARITIES AND GLOBAL
HEALTH?
AND I THINK THERE ARE -- THIS IS
A LITTLE BIT SIMPLE MINDED BUT I
THINK THERE ARE TWO BASIC
UNDERSTANDINGS OF WHAT THE
RELATIONSHIP IS.
ONE IS THAT ALL GLOBAL HEALTH IS
ESSENTIALLY HEALTH DISPARITIES
RESEARCH.
SO GLOBAL HEALTH IS KIND OF A
SUBSIDIARY BRANCH OF HEALTH
DISPARITIES.
ANOTHER VIEW, AND THIS TENDS TO
BE MORE CONCORDANT WITH MY OWN
THINKING, IS -- THESE ARE TWO
INDEPENDENT DISCIPLINES THAT
HAVE A LOT OF SCIENTIFIC AND
PHILOSOPHICAL KINSHIP AND
OVERLAP, AND TO BE HONEST, I
FEEL WE HAVE BEEN NOT ADEQUATELY
REALIZED THAT OVERLAP.
THAT'S WHY I'M SO GRATEFUL TO BE
PRESENTING AT THIS MEETING TODAY
TO PERHAPS OFFER A GLOBAL LENS
ON THE PROBLEM OF HEALTH
DISPARITIES AND HAVE ALSO BEEN
THINKING QUITE A LOT ABOUT HOW
TO APPLY A HEALTH DISPARITIES
LENS TO THE WORK THAT WE DO IN
GLOBAL HEALTH BECAUSE I'M NOT
ACCUSTOMED TO THINKING I MYSELF
AS A HEALTH DISPARITIES
RESEARCHER.
I JUST WANT TO POINT OUT THERE
HAVE BEEN SIMILAR DEFINITION
CONCERNS ACTUALLY FOR HEALTH
DISPARITIES AND MINORITY HEALTH,
INCLUDING THIS REALLY NICE PAPER
THAT I CAME ACROSS ABOUT A YEAR
AGO AS WE WERE TRYING TO REFINE
SOME OF OUR OWN THINKING BY DRS.
DURAND AND PEREZ-STABLE FROM
NIMHD TALKING ABOUT HOW MINORITY
HEALTH AND HEALTH DISPARITIES
ARE RELATED WITH DIFFERENT
FIELDS OF RESEARCH.
CURRENT RESEARCH OFTEN ASSUMES
THAT MINORITY DIFFERENCES EQUATE
TO HEALTH DISPARITIES WITH THE
SAME CONTRIBUTING FACTORS,
EQUATING MINORITY HEALTH AND
HEALTH DISPARITIES ASSUMES THAT
ALL MINORITY HAVE WORSE HEALTH
OUTCOMES THAN THE REST OF THE
POPULATION, YET IN SOME
IMPORTANT CONDITIONS, SOME
MINORITY GROUPS HAVE BETTER
HEALTH OUTCOMES THAN WHITE.
SO I THINK YOU COULD TAKE THIS
ARTICLE, THE OPENING TO
PAPER, SUBSTITUTE GLOBAL HEALTH
AND I THINK IT WOULD BE FAIRLY
CONCORDANT WITH MY OWN THINKING
ABOUT THIS.
SO THIS IS THE NIMHD FRAMEWORK
WHICH I THINK ALL OF YOU ARE
PROBABLY EXTREMELY FAMILIAR
WITH.
YOU LIKELY HAVE OTHER
FRAMEWORKS, PERHAPS, THAT YOU
PREFER.
WE'VE SPENT A LOT OF TIME
THINKING ABOUT THIS PARTLY
BECAUSE WE'RE AT THE NIH, PARTLY
BECAUSE WE WORK WITH NIMHD
COLLEAGUES CLOSELY, PARTLY
BECAUSE WE'RE DOING THE INVERSE
OF WHAT I'M TRYING TO DO IN THIS
SESSION WHICH IS APPLY A GLOBAL
LENS TO HEALTH DISPARITIES
RESEARCH, WE'VE BEEN THINKING
ABOUT HOW TO APPLY A HEALTH
DISPARITIES LENS TO SOME OF OUR
WORK IN GLOBAL HEALTH.
ONE OF THE THINGS THAT'S NICE
ABOUT THIS NIMHD FRAMEWORK IS
THE WAY IN WHICH IS JUST
PROVIDES AN ORGANIZING STRUCTURE
TO CAPTURE THE IMMENSE
COMPLEXITY THAT ACCOMPANIES
HEALTH DISPARITIES, AND SO
TAKING A GLOBAL LENS, I WOULD
SAY THAT ACROSS EACH ELEMENT IN
THE NIMHD FRAMEWORK, THERE ARE
SIMILAR PATTERNS BUT ALSO VERY
IMPORTANT DIFFERENCES.
AND I'LL TRY TO GIVE SOME
ILLUSTRATIONS OF THAT.
SO FOR EXAMPLE, I'VE GOT A
COUPLE OF EXAMPLES RELATED TO
WORK ON WOMEN'S CANCERS IN
AFRICA, AND THEN WE'LL PIVOT AND
TALK A LITTLE BIT MORE ABOUT HOW
WE'VE SOUGHT TO KIND OF UNCOVER
AND APPLY SOME OF THAT NIMHD
FRAMEWORK IN SOME OF THE WORK
WE'VE DONE IN MALAWI.
BUT THIS IS WORK SUPPORTED BY
THE NCI, CONDUCTED WITH
COLLEAGUES AT IARC LOOKING AT
BREAST CANCER SURVIVAL ACROSS
MULTIPLE AFRICAN SETTINGS.
WHAT THESE AUTHORS HAVE FOUND IS
THAT THERE'S ACTUALLY QUITE
SIMILAR STRUCTURAL
DISCRIMINATION PATTERNS BY RACE
FOR WOMEN WITH BREAST CANCER IN
AFRICA.
SO LOOKING ACROSS A VARIETY OF
AFRICAN SETTINGS, CURRENT
THREE-YEAR SURVIVAL IS SHOWN IN
THIS BLUE COLOR, AND YOU CAN SEE
THAT ACROSS AFRICA AND EVEN
WITHIN SPECIFIC COUNTRIES, SO
FOR EXAMPLE IN AMIVIA, WE SEE
MANY OF THE SAME STRUCTURAL
DISCRIMINATION PATTERNS THAT WE
OBSERVE IN THE U.S., PERPETUATED
EVEN IN AN AFRICAN CONTEXT.
AND THERE SEEMS TO BE A DOSE
RELATIONSHIP.
THAT IS, THE MORE BLACK YOU ARE,
THE WORSE YOU DO.
SO WHITE WOMEN IN NA BIB YA DO
QUITE WELL, MIXED RACE WOMEN DOO
POOR, MORE POORLY, AND BLACK
WOMEN DO THE WORST.
THESE AUTHORS ADDITIONALLY
SOUGHT TO APPORTION THE SURVIVAL
GAPS BASED ON THE OBSERVATIONAL
DATA THAT THEY HAD AND IN THEIR
MODELING, CONCLUDED THAT AGAIN
LIKE MANY STUDIES HAVE SHOWN IN
THE UNITED STATES, MUCH OF THE
SURVIVAL GAP CAN BE MADE UP
THROUGH DOWNSTAGING OF TUMORS,
IMPROVED TREATMENT AND REDUCED
SOCIAL INEQUALITIES.
THAT IS THE BIOLOGIC
CONTRIBUTION TO THIS
DIFFERENTIAL SURVIVAL FOR WOMEN
ACROSS SUB-SAHARAN AFRICA, ALL
WITH BREAST CANCER, CAN BE MADE
UP THROUGH SOME MORE
STRUCTURALLY AND PERHAPS
SOCIALLY ORIENTED INTERVENTIONS.
AS OPPOSED TO BETTER BIOLOGIC
TARGETING.
ANOTHER EXAMPLE, AGAIN, WHAT
I'VE TRIED TO DO IS EMPHASIZE
BOTH SIMILARITY AND DIFFERENCE.
SO THERE IN THE PRIOR SLIDE, I
WOULD SAY WE SEE SOMEWHAT
SIMILAR PATTERNS TO WHAT WE
OBSERVE IN THE U.S.
AND OF COURSE ADDRESSING THEM, I
THINK WILL BE INFORMATIVE TO HOW
WE MIGHT ADDRESS THEM IN THE
UNITED STATES AS WELL.
IN ANOTHER -- HERE I WANT TO
POINT OUT THERE'S IN OTHER
INSTANCES DIFFERENCES.
SO HERE IS A QUITE DIFFERENT
LEVEL OF HEALTH SYSTEM AND
POLICY PROGRESS TOWARDS CERVICAL
CANCER ELIMINATION IN RWANDA.
MANY OF YOU WILL KNOW THAT THE
WHO HAS CALLED FOR CERVICAL
CANCER ELIMINATION BY WHICH THEY
MEAN A REDUCTION IN CERVICAL
CANCER INCIDENCE WORLDWIDE TO A
LEVEL LESS THAN 4 PER 100,000.
BY THE WAY, WE HAVE NOT ACHIEVED
THAT TARGET YET IN THE UNITED
STATES, AND ACTUALLY ONE OF THE
FIRST COUNTRIES WORLDWIDE TO
ACCOMPLISH THIS, PERHAPS THE
FIRST, MAY BE RWANDA.
THIS IS A NEWSPAPER ARTICLE FROM
THE GUARDIAN SEVERAL MONTHS AGO.
RWANDA IS A LOW INCOME COUNTRY
WITH A HIGH HIV PRESENCE AND LOW
CERVICAL CANCER BURDEN, DESPITE
THAT THEY'VE MADE REMARKABLE
PROCESS TOWARDS THIS GOAL.
SOME OF THE ENABLING FACTORS
OUTLINED IN THIS ARTICLE ARE AN
HPV VACCINATION EFFORT SINCE
2011 WITH CONSISTENT MORE THAN
90% COVERAGE FOR ELIGIBLE SCHOOL
AGED GIRLS.
I THINK IN MANY RESPECTS WE
WOULD ENVY THIS IN SOME
COMMUNITIES IN THE UNITED
STATES.
NATIONAL PROGRAMS TO IMPLEMENT
HPV-BASED SCREENING FOR WOMEN
ACROSS THE COUNTRY.
TREATMENT BEING AVAILABLE FOR
THOSE WHO ARE IDENTIFIED AS
HAVING PRECANCER AND CANCER.
TRAINING FOR PROVIDERS SO THEY
CAN PROVIDE THESE SERVICES
EFFECTIVELY.
COMMUNITY EDUCATION BY TEACHERS
AND HEALTH WORKERS, PARTICULARLY
SINCE VACCINATION IS BEING
OFFERED IN SCHOOLS.
I THINK IT'S BEEN VERY CLEAR IN
AFRICAN SETTINGS HOW IMPORTANT
TEACHERS ARE FOR THAT -- FOR
THOSE CONVERSATIONS TO CREATE
THE NECESSARY DEMAND,
DESTIGMATIZE CERVICAL CANCER,
SUSTAINABLE FINANCING INCLUDING
A NATIONAL HEALTH INSURANCE PLAN
THAT HAS PROVIDED SUPPORT FOR
ALL OF THESE EFFORTS, BOTH FROM
RWANDAN GOVERNMENT AND ALSO FROM
MANY INTERNATIONAL PARTNERS, AND
THEN ENCASING ALL OF THIS WITHIN
A BROADER WOMEN'S EMPOWERMENT
AGENDA THAT HA IS REALLY LED FRM
THE OFFICE OF THE PRESIDENT.
SO I THINK THESE ENABLING
FACTORS IN MANY RESPECTS HAVE
ACHIEVED A LEVEL OF PROGRESS IN
A LOW INCOME COUNTRY IN AFRICA
WITH A HIGH HIV AND CERVICAL
CANCER BURDEN THAN WE MIGHT ENVY
IN THE UNITED STATES.
TO ELABORATE ON THIS THEME A
LITTLE BIT MORE, TALKING A
LITTLE ABOUT SOME OF THE WORK
THAT WE DID IN MALAWI, WHICH IS
WHERE I LIVED AND WORKED AS AN
NCI-SUPPORTED INVESTIGATOR
BEFORE BEING RECRUITED TO THE
NCI THREE YEARS AGO TO DIRECT
THE CENTER FOR GLOBAL HEALTH,
I'VE JUST INDICATED HERE WHERE
MALAWI IS ON THE MAP AND ALSO
PROVIDED SOME KIND OF
SOCIOECONOMIC DEMOGRAPHIC
CONTEXT FOR MALAWI.
I THINK IMPORTANTLY FOR THIS
CONVERSATION DURING THE PERIOD
OF TIME I LIVED THERE, I WAS THE
ONLY MEDICAL ONCOLOGIST IN THE
COUNTRY OF 18 MILLION PEOPLE,
AND ANNUAL HEALTH EXPENDITURE
PER CAPITA, THAT IS WHAT THE
GOVERNMENT SPENT PER PERSON PER
HEALTH, FOR ALL HEALTH-RELATED
NEEDS, WAS ON THE ORDER OF 35
U.S. DOLLARS PER PERSON PER
YEAR.
SO I'M GOING TO AGAIN TALK A
LITTLE BIT ABOUT THE NIMHD
FRAMEWORK AND TRY TO TALK ABOUT
SOME OF THE WORK THAT WE DID AND
SOME OF THE SIMILARITIES AND
DIFFERENCES THAT WE OBSERVED
REALLY ACROSS THE FRAMEWORK.
THIS IS INTENTIONALLY A LITTLE
BIT KALEIDOSCOPEIC BECAUSE I
WANTED TO TRY TO CAPTURE THE
COMPLEXITY OF DISPARITIES AND
HOW THEY PLAY OUT IN GLOBAL
SETTINGS, RATHER THAN KIND OF
DOING A SPECIFIC DEEP DIVE ON
ANY PARTICULAR TOPIC.
SO JUST TO START, WE OBSERVED
QUITE DIFFERENT DIFFUSE LARGE B
CELL LYMPHOMA BIOLOGY IN THE
CONTEXT OF HIV IN MA LA MALAWI.
THIS IS ORIENTED A LITTLE BIT
FROM THE NIMHD FRAMEWORK, START
AT THE UPPER LEFT, WHICH IS MORE
OF THE CELLULAR ASPECTS OF
DISPARITIES AND SORT OF OVER THE
COURSE OF THE NEXT FEW SLIDES,
WE'LL PROGRESS TOWARDS THE
BOTTOM RIGHT, WHICH I THINK
TOUCHES ON MORE OF THE SOCIETAL
ASPECTS OF DISPARITIES.
AND I THINK WE WERE CONSISTENTLY
BOTH SURPRISED AT WHAT WAS THE
SAME AND SURPRISED AT WHAT WAS
DIFFERENT.
I DON'T THINK THAT A PRIORI WE
COULD HAVE AL ALWAYS PREDICTED T
WOULD HAVE BEEN THE SAME AS THE
U.S. AND WHAT WOULD HAVE BEEN
DIFFERENT AND THAT'S SOME OF
WHAT I WANT TO ILLUSTRATE OVER
THE NEXT SEVERAL SLIDES.
WE FOUND LYMPHOMA BIOLOGY WAS
VERY DIFFERENT IN THE CONTEXT OF
HIV IN MALAWI.
THIS IS WORK WE ACTUALLY TRIED
TO DO UNSUCCESSFULLY IN THE U.S.
BUT FOR A WHOLE VARIETY OF
REASONS.
THIS IS DIFFICULT TO DO IN THE
UNITED STATES.
BUT IN A SETTING LIKE MALAWI,
WHERE DIFFUSE LARGE B CELL
LYMPHOMA, THE MOST COMMON
AGGRESSIVE NON-HODGKIN'S
LYMPHOMA AMONG ADULTS IS VERY
HIGHLY HIV ASSOCIATED, IT
ACTUALLY HAS, WE FOUND, A VERY
DIFFERENT BIOLOGIC FEATURES THAN
AS COMPARED WITH HIV NEGATIVE
DLBCL IN A WAY THAT HAD REALLY
NOT BEEN WELL DESCRIBED OR
CHARACTERIZED AT A MOLECULAR
LEVEL.
HOWEVER, WE FOUND WHEN YOU APPLY
TARGETED THERAPY, SO IN THIS
INSTANCE, THIS IS RITUXIMAB, A
MONOCLONAL ANTIBODY DIRECTED
AGAINST CD20, WHICH ADDS
SIGNIFICANT CURATIVE BENEFIT FOR
MANY AGGRESSIVE B CELL LYMPHOMAS
EXPRESSING CD20, THIS AGENT WAS
APPROVED BY THE U.S. FDA IN
1997, BUT HAD NEVER BEEN
PROSPECTIVELY STUDIED IN AN
AFRICAN AMEANAFRICAN CONTEXT ANS
GENERALLY UNAVAILABLE THROUGHOUT
THE DON'T TENT AS A RESULT OF
ACCESS AND COST.
EVEN SIMILAR AGENTS MADE IN
INDIA ARE TYPICALLY $3,500, FOR
EXAMPLE, FOR A TREATMENT COURSE,
WHICH IS 100 FOLD HIGHER THAN
THE ANNUAL PER CAPITA HEALTH
EXPENDITURE IN A COUNTRY LIKE
MALAWI.
BUT NEVERTHELESS, WE FOUND THAT
THERE WAS QUITE SIMILAR EFFICACY
WHEN YOU APPLIED SOME OF THESE
NEWER SPECIFIC CANCER TARGETING
AGENTS FOR ADULTS WITH LARGE B
CELL LYMPHOMA IN MALAWI, DESPITE
THESE PATIENTS BEING LARGELY HIV
AFFECTED WITH MANY FAIRLY
ADVERSE DISEASE CHARACTERISTICS,
SO WE ACCOMPLISHED A 55%
TWO-YEAR OVERALL SURVIVAL, WHICH
IS REALLY A PROXY FOR CURE FOR
THIS POPULATION.
AND FOR COMPARISON IN A U.S.
COMPARABLE POPULATION, THE
TWO-YEAR KIND OF SURVIVAL RATE
WOULD BE SOMEWHERE ON THE ORDER
OF 60 TO 70%.
SO AGAIN, WITHOUT SORT OF
A PRIORI KNOWING THIS WOULD WORK
AS WELL AS IT DID, WE FOUND THAT
INDEED IT DID, EVEN IN A SETTING
WHERE THE HEALTH SYSTEM
INFRASTRUCTURE TO SUPPORT CANCER
TREATMENT IS QUITE A BIT
DIFFERENT THAN WE ARE USED TO IN
THE UNITED STATES.
DIFFERENT -- SO WE FOUND QUITE
DIFFERENT PATIENT-REPORTED
EXPERIENCES FOR CHILDREN WITH
LYMPHOMA IN MALAWI.
SO THIS IS A LOT OF WORK THAT WE
HAVE DONE TO REALLY I THINK
AMONG THE FIRST TRANSLATIONS AND
VALIDATIONS OF MANY OF THE
CONTEMPORARY PRO INSTRUMENTS
THAT WE'RE USING IN THE UNITED
STATES ROUTINELY NOW IN NCTN
TRIALS.
WE SOUGHT TO TRANSLATE AND
VALIDATE THESE TO CAPTURE
PATIENT LEVEL EXPERIENCES IN
MALAWI.
THIS IS WORK DONE WITH CHILDREN
WITH LYMPHOMA AND COMPARING THEM
TO AVAILABLE DATA FOR CHILDREN
WITH CANCER IN THE UNITED
STATES.
AND WHAT YOU'LL SEE IS
THAT THE EXPERIENCE OF HAVING
CANCER IS QUITE DIFFERENT.
WHEN WE TRY TO CAPTURE QUALITY
OF LIFE USING PATIENT-REPORTED
OUT COME INSTRUMENT, CHILDREN IN
MALAWI HAVE SIGNIFICANTLY WORSE
QUALITY OF LIFE, THEY HAVE WORSE
MOBILITY, HIGHER ANXIETY, HIGHER
DEPRESSION, HIGHER FATIGUE AND
HIGHER PAIN, ALL LARGELY AS A
RESULT OF MORE ADVANCED DISEASE
AT THE TIME THAT THEY'RE
DIAGNOSED WITH CANCER.
AND THAT IN SOME WAYS SEEMS
OBVIOUS BUT TO US WAS REALLY
IMPORTANT TO DEMONSTRATE BECAUSE
I DON'T THINK THIS IS ALWAYS
OBVIOUS WHEN YOU WALK THROUGH A
CLINIC.
YOU KNOW, PEOPLE IN AFRICAN
HEALTH SYSTEMS ARE USED TO NOT
EXPECTING AS MUCH FROM THEIR
HEALTH SYSTEM AS WE COMMONLY DO
IN THE U.S. SO THEY DON'T
COMPLAIN IN THE WAY THAT I
COMPLAIN WHEN I GO TO THE
DOCTOR.
SO I THINK THERE IS A
SUPERFICIAL LEVEL OF STOICISM
THAT CAN REALLY MASK THE AMGHT T
OF IMMENSE SUFFERING THAT IS
REALLY OCCURRING THAT I THINK IS
IMPORTANT TO DOCUMENT, AND MORE
IMPORTANTLY DEMONSTRATE THAT
THESE ALL GET BETTER AS PATIENTS
ARE TREATED EFFECTIVELY FOR
THEIR CANCER.
ONE THING WE WERE REALLY
INTRIGUED BY IS THAT PEER
RELATIONSHIPS WERE ACTUALLY
BETTER IN MALAWI THAN FOR
CHILDREN WITH CANCER IN THE
UNITED STATES.
THIS IS FASCINATING TO THINK
ABOUT.
IN THE UNITED STATES BEING A KID
WITH CANCER IS INCREDIBLY
SOCIALLY ISOLATING.
YOU'RE TAKEN OUT OF SCHOOL,
OFTEN KEPT IN THE HOSPITAL FOR
LOCK PERIODS OF TIME UNDER
STRICT INFECTION CONTROL
MEASURES WHERE YOU'RE REALLY NOT
ABLE TO IN ANY MEANINGFUL WAY
INTERACT WITH OTHER CHILDREN OR
HAVE A NORMAL KIDS LIFE.
IN MALAWI, FOR BETTER OR WORSE
CHILDREN ARE OFTEN CARED FOR IN
AN OPEN WARD INTERACTING WITH
OTHER KIDS WITH CAP SER,
VILLAGES WILL KIND OF COALESCE
AROUND A FAMILY THAT HAS A SICK
CHILD SO IT'S INTERESTING TO
THINK ABOUT THE WAYS IN WHICH
THE EXPERIENCE OF HAVING CANCER
MAY BE VERY CULTURALLY ENCODED
AGAIN, IN WAYS THAT WE COULDN'T
HAVE NECESSARILY ANTICIPATED
WITHOUT BEING WILLING TO DO THIS
KIND OF WORK.
[PLEASE STAND BY]
SO WE FOUND QUITE SIMILAR
STRUCTURAL AND ENVIRONMENTAL
FACTORS UNDERLYING PEDIATRIC
LYMPHOMA TREATMENT
NON-COMPLETION IN MALAWI SIMILAR
TO WHAT WE SEE IN MANY
COMMUNITIES AND SETTINGS IN THE
UNITED STATES.
SO THESE ARE CHILDREN WHO OFTEN
HAVE TRAVELED WITH THEIR
FAMILIES HALFWAY ACROSS THE
COUNTRY TO RECEIVE A DIAGNOSIS
AND INITIATE CARE, HAVE
UNDERGONE SOME INITIAL
COUNSELING WITH THE TREATMENT
TEAM, AND DESPITE THAT, OFTEN
DON'T COMPLETE TREATMENT IN THE
WAY THAT WOULD BE RECOMMENDED.
AND THIS IS DESPITE FOR THESE
CANCERS IN PARTICULAR, THEY
ARE -- THEY HAVE SIGNIFICANT
CURATES, EVEN WITH RELATIVELY
OLD GENERIC MEDICINES THAT ARE
OFTEN AVAILABLE IN MOST AFRICAN
SETTINGS.
AND WE FOUND THAT LACK OF
EDUCATION, FIREWOOD AS THE
PRIMARY SOURCE OF ENERGY IN THE
HOME, WHICH IS A PROXY FOR LOWER
SOCIOECONOMIC STATUS IN THE
MALAWIAN CONTEXT, LONG TRAVEL
TIMES, AGAIN VERY SIMILAR TO
WHAT FOR EXAMPLE MANY RURAL
PATIENTS MIGHT FACE IN TRYING TO
ACCESS HIGH QUALITY CANCER CARE
AT AN NCI DESIGNATED CANCER
CENTER AFFLICT PATIENTS TRYING
TO RECEIVE CANCER TREATMENT IN
MALAWI AS WELL.
STIGMA IS COMMON, WE'RE QUITE
USED TO STIGMA IN THE UNITED
STATES.
FOR EXAMPLE, TREATMENT RELATED
ALOPECIA OR THE FEELING THAT
WOMEN MAY HAVE FOLLOWING
MASTECTOMY FOR BREAST CANCER,
THE FEELING THAT PATIENTS WITH
LUNG CANCER MAY EXPERIENCE WHEN
THEY'RE ASSUMED TO HAVE BEEN A
SMOKER AND PERHAPS DESERVE,
QUOTE-UNQUOTE, THE CANCER THAT
THEY GOT.
SIMILARLY STIGMA IS A NEARLY
UNIVERSAL EXPERIENCE WE FOUND IN
MALAWI, BUT THE DRIVERS ARE
QUITE DIFFERENT.
AND IN PARTICULAR, BELIEFS
AROUND CANCER ORIGIN, SO YOU CAN
IMAGINE IN A SOCIETY WHERE THE
KIND OF OPERATING PARADIGM FOR
HEALTH FOR YEARS, DECADES,
CENTURIES HAS BEEN ACUTE AND --
AN ACUTE INFECTIOUS PARADIGM
THAT CANCER WOULD BE FELT TO BE
INFECTIOUS, SO PATIENTS DESCRIBE
OTHERS BEING UNWILLING TO SHARE
FOOD WITH THEM BECAUSE THEY
THOUGHT THEY COULD INFECT THEM
WITH CANCER.
CANCER IS OFTEN THOUGHT TO BE
DUE TO BEWITCHMENT.
NOT ALL -- MOST CANCER OCCURS IN
HIV NEGATIVE PEOPLE, BUT DESPITE
THAT, THERE'S A SOCIETAL
PERCEPTION THAT HAVING CANCER
ALSO MEANS THAT YOU HAVE HIV.
AND SO I THINK UNPACKING THIS
AND UNDERSTANDING IT IS, OF
COURSE, IMPORTANT BECAUSE THESE
CAN BE ADDRESSED AND SORT OF
TAILORED IN SPECIFIC WAYS, AND
IT'S ONLY BY KIND OF DOING THIS
KIND OF WORK THAT PROVIDES THOSE
OPPORTUNITIES.
AND THEN JUST TO START KIND OF
WRAPPING UP, YOU KNOW, FROM A
POLICY MAKER PERSPECTIVE, WE
KNOW AGAIN KIND OF AT THE BOTTOM
RIGHT OF THE NIMHD FRAMEWORK
FROM MORE OF THE SOCIETAL AND
POLICY PERSPECTIVE, EVEN HAVING,
FOR EXAMPLE, DONE CLINICAL
TRIALS IN AN LMIC THAT
DEMONSTRATED THE EFFECTIVENESS,
SAFETY AND EFFICACY OF
CONTEMPORARY CANCER THERAPIES,
GOVERNMENT IN MALAWI AS I TOLD
YOU HAS VERY DIFFERENT KIND OF
COST-EFFECTIVENESS AND BUDGET
IMPACT CONSIDERATIONS, RIGHT, IN
A COUNTRY THAT, AGAIN, SPENDS 35
TO 40 U.S. DOLLARS PER PERSON
PER YEAR ON ALL OF THEIR
HEALTH-RELATED NEEDS ASKING THEM
TO SPEND WHAT THEY WOULD SPEND
FOR 100 PEOPLE FOR A SINGLE
INDIVIDUAL WITH CANCER IS
INTUITIVELY -- DOESN'T MAKE ANY
SENSE.
THAT'S WHY THE KIND OF DATA
GENERATION THAT WOULD HELP
INFORM THAT DECISION-MAKING IS
QUITE IMPORTANT AND NOT
SURPRISINGLY WHEN YOU CONSIDER
THAT THESE ARE GENERALLY YOUNG
PATIENTS WHO HAVE THE
OPPORTUNITY TO BE CURED WITH
TIME-LIMITED THERAPY AND THEN
HAVE POTENTIALLY DECADES OF
EVENT-FREE SURVIVAL
SUBSEQUENTLY, SPENDING MORE UP
FRONT IS ACTUALLY EXTREMELY
COST-EFFECTIVE, AND THE
COST-EFFECTIVENESS METRICS
COMPARE QUITE FAVORABLY TO OTHER
THINGS THAT THE DEVELOPMENT
COMMUNITY HAS WIDELY EMBRACED,
LIKE ANTIRETROVIRAL THERAPY,
LIKE HUMAN PAPILLOMAVIRUS
VACCINATION.
EVEN IF YOU GO BEYOND THE
CONTEXTUAL FACTORS OF INDEXING
COST-EFFECTIVENESS TO THE GDP OF
THE COUNTRY IN WHICH A PATIENT
WITH CANCER HAPPENS TO LIVE AND
TAKE A MORE UNIVERSALIST VIEW
THAT IS ALL LIVES ARE THE SAME
AND EQUAL, WHICH IS SOMETHING WE
SAY MUCH MORE THAN WE DO, THESE
ARE KIND OF NO-BRAINERS.
I MEAN, WE'RE TALKING ABOUT
INVESTMENTS PER QALI OR DALI
CONVERTED IN AN AFER CONTEXT AT
LEAST 100 TO 150 FOLD LOWER THAN
WHAT WE COMMONLY ACCEPT IN THE
UNITED STATES FOR PEOPLE
AFFECTED BY CANCER.
THEN PERHAPS ONE OF THE THINGS
WE WERE MOST SURPRISED AT WAS
THAT WE REALLY HAD QUITE SIMILAR
OPPORTUNITIES, I THINK, AS WITH
THE DISPARITIES FIELD HERE IN
THE UNITED STATES TO INCREASE
DIVERSITY AND INCLUSION FOR
CANCER RESEARCH IN MALAWI.
MALAWI WAS REALLY A COUNTRY
WITHOUT ANY MEANINGFUL TRACK
RECORD OF CANCER RESEARCH, NOT A
LOT OF INFRASTRUCTURE, NOT A LOT
OF HISTORICAL PRECEDENT FOR
PEOPLE DEVELOPING CAREERS AS
INVESTIGATORS, BUT YOUNG PEOPLE
IN MEDICAL SCHOOL, YOUNG PEOPLE
IN THEIR SCHOOLS OF PUBLIC
HEALTH KNOW THAT THIS IS A BIG
PROBLEM IN THEIR COUNTRY, AND
WHEN OFFERED OPPORTUNITIES TO
DEVELOP CAREERS AND WORK ON THIS
CRITICAL PUBLIC HEALTH NEED,
PEOPLE JUST CAME OUT OF THE
WOODWORK, REALLY, AND IT WAS
REALLY WONDERFUL TO SEE SUCH
AMAZING TALENT KIND OF ASSEMBLE
AND COALESCE SO QUICKLY, WITH
NCI SUPPORT AND BLESSING TO
KEUND OF PURSUE CANCER RESEARCH
CAREERS IN HE EVEN IN SOME OF
THESE VERY CHALLENGING
ENVIRONMENTS.
I JUST WANTED TO MENTION, WE
HAVE OUR OWN MEETING ONGOING
THESE THREE DAYS, SO THIS IS A
CONFLICT THAT WE WILL DEFINITELY
AVOID NEXT YEAR.
IT DID NOT OCCUR LAST YEAR.
BUT I'M NOT SUGGESTING THAT YOU
LEAVE THIS MEETING TO JOIN OUR
MEETING TODAY.
FOR THOSE OF YOU, WE DO HAVE
ANOTHER THIRD DAY TOMORROW, SO
FOR THOSE OF WHO YOU ARE
INTERESTED, YOU CAN STILL
REGISTER AND TUNE IN, AND WE
LOOK FORWARD TO HAVING MORE
DISPARITIES WORK AT OUR MEETING
AND MORE GLOBAL WORK AT THIS
MEETING.
THEN I'LL JUST CLOSE BY SAYING,
AGAIN I'VE JUST USED AN NIMHD
FRAMEWORK AS AN ORGANIZE
NIEDZING PRINCIPLE BUT I THINK
SIMILAR PATTERNS AND IMPORTANT
DIFFERENCES EXIST WORLDWIDE FOR
EACH FRAMEWORK AND HAVING THE
COURAGE, HUMILITY AND CURIOSITY
I BELIEVE WILL MAKE THE GLOBAL
DISPARITIES FIELD AND GLOBAL
HEALTH FIELD AND INDEED CANCER
RESEARCH VERY MUCH STRONGER, SO
THANKS VERY MUCH.
[APPLAUSE]
>>THANK YOU SO MUCH FOR A VERY
ACCESSIBLE TALK, I THINK TO A
LOT OF OUR AUDIENCE MEMBERS WHO
MAY NOT HAVE BEEN AS FAMILIAR
WITH GLOBAL HEALTH OR THE
PATTERNS OF RESEARCH IN GLOBAL
HEALTH.
DO WE HAVE ANY QUESTIONS FROM
THE AUDIENCE?
WE CAN TAKE, I THINK, ONE
QUESTION.
>>I HAVE A QUESTION.
AND IT'S -- IT RELATES TO
THERAPY.
SO YOU TOLD US THAT CERTAIN
THERAPIES MAY ACTUALLY WORK
BETTER IN THESE POPULATIONS AND
THEY DO WORK HERE, AND THEN
COMES THE QUESTION, WHAT KIND OF
THERAPIES CAN BE BROUGHT INTO
AFRICA, FOR EXAMPLE, IMMUNE
THERAPY, WOULD THAT WORK IN
AFRICA OR IS IT JUST -- YOU
KNOW, IS THE SETTING FOR IMMUNE
THERAPY OR FOR SOME OTHER
THERAPIES JUST NOT GIVEN IN
AFRICA, IT'S NOT REALLY A MONEY
QUESTION, SO IT'S MORE AN
INFRASTRUCTURE QUESTION, CAN YOU
TELL US A LITTLE BIT MORE ABOUT
IT?
>>SURE.
I MEAN, I THINK -- I THINK MANY
MORE THINGS CAN WORK THAN PEOPLE
COMMONLY THINK.
SO THAT'S THE FIRST POINT.
I THINK THE SECOND POINT IS, ONE
NEEDS TO GENERATE EVIDENCE THAT
WOULD SUPPORT THIS, RIGHT, AND
THAT INCLUDES POTENTIALLY
TAILORING TREATMENT PROTOCOLS,
ET CETERA, RIGHT?
THERE MAY NEED TO BE SOME
IMPORTANT MODIFICATIONS MADE
JUST AS WE DO ROUTINELY AT U.S.
NCI-DESIGNATED CANCER CENTERS,
BUT YOU KNOW, WHAT WOULD BE MUCH
BETTER IS TO DO THAT BASED ON
SOME EVIDENCE RATHER THAN WHAT
SORT OF PEOPLE THINK WITHOUT
DOING THAT.
AND AS YOU KNOW, HOW TO GENERATE
THE KIND OF EVIDENCE THAT WOULD
BE INFORMATIVE TO THESE BROADER
ACCESS QUESTIONS, FOR EXAMPLE,
WITH IMMUNOTHERAPY, THIS IS
SOMETHING THAT WE'RE THINKING A
GREAT DEAL ABOUT, AND INTEND TO
DO, I THINK, WORK IN THIS AREA
WITH NCI SUPPORT IN THE MONTHS
AND YEARS TO COME.
>>SO WHAT WE REALLY NEED IS AT
LEAST SMALL TRIALS OF THERAPIES
THAT WE'RE USING HERE, THEN
EVALUATING THEM IN AFRICA, DO
THEY WORK?
>>YEAH, AND JUST TO BACK UP A
LITTLE BIT, THERE IS A
HISTORICAL PRECEDENT FOR THIS
WITH HIV, SO LIKE IN THE
EARLY -- IN THE MID 1990s OR
THE EARLY 2000s, WE HAD
EXACTLY THE SAME CONVERSATION
FOR HIV, WHICH IS CAN WE PROVIDE
HIV TREATMENT, WHICH AT THE TIME
WAS ORAL PILLS GIVEN TO PEOPLE
AND YET WE STILL THOUGHT THAT
WAS NOT ABLE TO BE DONE IN AN
AFRICAN CONTEXT.
AND THERE WERE LEGITIMATE
ACADEMIC DEBATES ABOUT WHETHER
AFRICANS DIDN'T KNOW WHAT TIME
TO TAKE THEIR MEDICINES, YOU'RE
JUST -- IF YOU DO THIS WITHOUT
HIV VIRAL LOAD MONITORING,
YOU'RE JUST GOING TO GET
RESISTANCE AND YOU'RE GOING TO
MAKE THE EPIDEMIC WORSE, AND
THIS IS WHERE I THINK THE
SCIENTIFIC COMMUNITY CAN BE
UNIQUELY USEFUL, BECAUSE I THINK
THEY CAN STEP IN AND SEE IF IT
WORKS AND GENERATE EVIDENCE THAT
IS THEN INFORMATIVE TO SORT OF
POLICY MAKERS AND DEVELOPMENT
PARTNERS, ET CETERA, AND SO I
THINK THERE'S A REAL OPPORTUNITY
TO DO THAT FOR CANCER AS WELL.
WE HAVE LIVED THIS STORY BEFORE,
I THINK.
>>THANK YOU SO MUCH.
[APPLAUSE]
>>GOOD MORNING.
WE'RE THE FIRST PANEL.
HAPPY TO BE HERE TODAY.
MY NAME IS ANN GEIGER.
I AM THE SCIENTIFIC DIRECTOR OF
CANCER CARE DELIVERY RESEARCH IN
THE NCI COMMUNITY ONCOLOGY
RESEARCH PROGRAM, NCOR, WHICH
YOU HEARD A LITTLE BIT ABOUT
YESTERDAY.
WE HAVE THREE GREAT SPEAKERS.
WE HAVE DR. SARAH JACKSON, WHO
IS A FELLOW HERE IN OUR NCI
INTRAMURAL PROGRAM, WE HAVE
DR. ASH ALPERT, WHO IS CURRENTLY
A FELLOW AT BROWN BUT I'M HAPPY
TO SAY IS GOING TO YALE.
SO SHE IS SWITCHING IVY LEAGUE
SCHOOLS.
BY THE WAY, NEITHER OF WHICH I
SUPPORT.
I WENT TO A DIFFERENT IVY LEAGUE
SCHOOL.
BUT GOOD FOR HER.
AND THEN DR. MEGAN MULLINS,
WHO'S AN ASSISTANT PROFESSOR AT
THE UNIVERSITY OF TEXAS
SOUTHWESTERN, WHO DID A POSTDOC
AT THE UNIVERSITY OF MICHIGAN,
WHICH I HAPPEN TO BE AN ALUMNI
OF, SO GO BLUE.
THOSE ARE MY LITTLE FUN
COMMENTS.
I JUST WANTED TO MAKE A FEW
OPENING COMMENTS TODAY.
ONE OF THE THINGS I WANTED TO DO
IS TALK ABOUT TERMINOLOGY,
BECAUSE I THINK MANY OF US
STRUGGLE WITH WHAT ALL THESE
DIFFERENT TERMS ARE.
AND SO, YOU KNOW, I'M NOT GOING
TO READ THESE TO YOU, BUT YOU
CAN SEE THE LGBTQIA, WHICH IS A
COMMON -- YOU WILL SEE SOME
COMBINATION OF THOSE THINGS
FREQUENTLY.
HOW WE INDIVIDUALS REFER TO
OURSELF CAN BE REALLY VARIABLE.
I CALLED MYSELF GAY FOR A WHILE,
THEN I WAS LESBIAN, THEN I WAS
BACK TO GAY, NOW I'M KIND OF AT
QUEER.
IT CHANGES.
MY SPOUSE WAS LESBIAN, IS NOW
BISEXUAL.
SO IT'S FLUID, HOW WE IDENTIFY.
FOR ME PERSONALLY, IT'S OKAY TO
ASK.
I GIVE PEOPLE A LOT OF GRACE IF
THEY STUMBLE OVER THE
TERMINOLOGY, SO SEEING US IS
MORE IMPORTANT THAN GETTING IT
PERFECT.
BUT I ALSO WANT TO ADDRESS TWO
TERMS WE USE IN RESEARCH.
SO SGM, SEXUAL AND GENDER
MINORITIES.
THAT IS A RESEARCH USAGE.
OUR COMMUNITY IS NOT SGM
COMMUNITY AND WE AS INDIVIDUALS
ARE NOT SGM.
SO IF YOU WOULD PLEASE JUST KIND
OF KEEP THAT IN MIND.
AND THEN SOGI.
I HAVE RECENTLY BEEN CALLED
SOGI.
THAT IS A DEFINITE MISUSE.
THAT IS A DATA TERMINOLOGY.
DR. JACKSON IS ACTUALLY GOING TO
TALK A LITTLE BIT MORE ABOUT
SOGI DATA.
SO I WANTED TO MENTION THAT.
I ALSO WANTED TO MENTION
SOMETHING THAT I HAVE
EXPERIENCED AND OBSERVED, WHICH
IS THAT MEMBERS OF OUR COMMUNITY
AND THOSE INTERESTED IN DOING
RESEARCH WITH OUR COMMUNITY
DON'T ALWAYS RECOGNIZE
THEMSELVES AS BEING INCLUDED IN
THINGS LABELED WITH TERMS LIKE
DIVERSITY, DISPARITIES,
MINORITY, UNDERSERVED.
AND WE MAY FEEL EXCLUDED WHEN
TERMS LIKE THAT ARE USED AND WE
LOOK INTO IT AND IN FACT ARE NOT
PART OF THE ACTIVITY.
SO I JUST WANT TO PUT A PLEA OUT
THERE TO EVERYONE TO PLEASE BE
VERY SPECIFIC IN WHAT YOU'RE
DOING, AND IF YOU ARE LIMITING
YOUR DISPARITIES ACTIVITIES, FOR
EXAMPLE, TO RURAL, JUST SAY
RURAL, THIS IS A RURAL
DISPARITIES ACTIVITY.
I THINK THAT WOULD BE GOOD FOR
EVERYONE AND I THINK IT WOULD BE
HELPFUL FOR OUR COMMUNITY AS
WELL.
SO I'M NOT GOING TO SAY MUCH
BECAUSE I THINK OUR SPEAKERS ARE
GOING TO TALK ABOUT THIS.
OUR COMMUNITY EXPERIENCES
SUBSTANTIAL DISPARITIES IN
CANCER OUTCOMES.
HERE ARE A COUPLE OF THE REAPS
WHY.
WE EXPERIENCE GREATER
LIFESTYLE-BASED RISK FACTORS,
AND THERE ARE FEWER LIFESTYLE
PROGRAMS -- INTERVENTION
PROGRAMS TAILORED TO OUR NEEDS.
WE ARE LESS LIKELY TO BE
SCREENED, WE HAVE HIGHER RATES
OF CERTAIN CANCERS, WE ARE LESS
LIKELY TO SEEK TIMELY CANCER
CARE.
ROUGHLY A THIRD OF US, IF YOU
ASK, WILL REPORT A PRETTY
SERIOUS INCIDENCE OF HARASSMENT
IN THE MEDICAL CARE SYSTEM.
I WOULD INCLUDE MYSELF AMONG
THOSE THIRD.
OBVIOUSLY THAT PROVOKES A LOT OF
MISTRUST.
AND SURVIVORSHIP CARE IS NOT AS
GOOD.
I'M GOING TO BACK UP ONE SECOND
BECAUSE I FORGOT TO SAY
SOMETHING THAT'S VERY IMPORTANT.
WE HEARD A LITTLE BIT OF THIS
YESTERDAY.
NONE OF THESE MINORITIZED GROUPS
ARE MONOLITHS.
AND OUR GROUP IS NOT EITHER.
AND IF YOU LOOK AT THESE
DIFFERENT GROUPS, YOU WILL SEE
SOME REASONS WE MAY NOT HAVE
VERY MUCH IN COMMON AND SOME
THINGS THAT WE VERY MUCH HAVE IN
COMMON.
AND I ALSO WANTED TO MENTION
THAT INTERSECTIONALITY IS A VERY
IMPORTANT ISSUE FOR OUR
COMMUNITY.
UNFORTUNATELY, THE GAY AND
LESBIAN COMMUNITY HAS A LONG
HISTORY OF RACISM, SEXISM.
IF YOU'RE A RURAL MEMBER OF ONE
OF THESE GROUPS, YOU COULD HAVE
A VERY CHALLENGING LIFE.
NOT ALL OF US LIVE IN URBAN
AREAS.
SO ONE OF THE THINGS WE'RE GOING
TO DO TODAY WHEN WE HAVE OUR
PANEL IS TRY TO TALK ABOUT THAT
A LITTLE BIT, BUT I WANT TO
ACKNOWLEDGE THAT THAT IS
SOMETHING THAT WE ARE TRYING TO
BE VERY AWARE.
SO WOULD YOU LIKE TO GO AHEAD?
OKAY.
SO I'M NOT GOING TO INTRODUCE
THE SPEAKERS.
THEY'RE JUST GOING TO GO ONE BY
ONE.
BUT I WILL SAY THIS IS
DR. JACKSON.
>>THANK YOU, EVERYONE, AND
THANK YOU FOR THAT FIRST TALK.
I DO WANT TO SAY, TO ADD ON TO
WHAT ANN SAID, IS THAT I'M GOING
TO SHOW YOU A LOT OF DATA OR
SOME SCARCE MINIMAL DATA, AND I
WANT YOU TO TAKE IT WITH A GRAIN
OF SALT.
SOME OF THE DATA I'M GOING TO
SHOW YOU IS THE ONLY DATA WE
HAVE ON CANCER IN THESE
COMMUNITIES, AND SOME OF IT IS
STILL PROBLEMATIC.
SO PLEASE KEEP THAT IN MIND.
AS AN INTRODUCTION, MY NAME IS
DR. SARAH JACKSON.
MY PRONOUNS ARE SHE/HER/HERS.
I'M A RESEARCH FELLOW IN THE
INFECTIONS AND
IMMUNOEPIDEMIOLOGY BRANCH WITHIN
DCG AT NCI.
HERE MY RESEARCH FOCUSES MOSTLY
ON CANCER BURDEN IN TRANS
INDIVIDUALS, BUT I AM GOING TO
BE TALKING ABOUT THE LARGER
LGBTQ+ COMMUNITY TODAY.
SO BEFORE I GET INTO TALKING
ABOUT CANCER RISK AMONG LGBTQ+
INDIVIDUALS, I WANT TO TALK
ABOUT HOW LARGE THE POPULATION
IS IN THE UNITED STATES.
SO THE U.S. CENSUS DOES NOT
COLLECT GENDER ORIENTATION OR
IDENTITY MAKING IT DIFFICULT TO
KNOW HOW LARGE THIS POPULATION
IS.
INSTEAD THESE DATA COME FROM A
2021 GALLOP POLL WHICH ESTIMATES
THAT 7.1% OF THE ADULT
POPULATION IN THE U.S. IS LGBT.
AND THEN THESE ARE THE GALLOP
POLL RESULTS BY GENERATION.
WHAT I FIND STRAI FIND STRIKINGE
PROPORTION OF PEOPLE IDENTIFYING
AS LGBT IS INCREASING WITH EACH
GENERATION.
SO THINK ABOUT HOW THE OLDEST
MILLENNIALS ARE NOW IN THEIR
40s SO WE HAVE ALMOST FOUR
GENERATIONS OF PEOPLE WHO ARE AT
AN AGE WHERE CANCER RISK IS
INCREASED, BUT WE HAVE NO GOOD
INFORMATION ON CANCER RISK
FACTORS, CANCER INCIDENCE OR
SURVIVAL FOR MEMBERS OF THIS
POPULATION.
AND THEN IF YOU LOOK AT GEN Z,
NEARLY 21% OF GEN Z CONSIDER
THEMSELVES TO BE LGBTQ+ WHICH
MEANS WE NEED TO START SETTING
STUDYINGTHIS POPULATION NOW SO N
PROVIDE THIS GENERATION WITH
CANCER RISK RELEVANT TO THEIR
BODIES AND EXPERIENCES.
I'M GOING TO USE THE TERM SOGI A
LOT, THANK YOU, ANN, FOR
INTRODUCING THIS.
IT STANDS AGAIN FOR SEXUAL
ORIENTATION IN GENDER IDENTITY.
SOGI IS NOT ROUTINELY COLLECTED
IN THE PLACES WHERE WE GO TO
LOOK FOR CANCER RISK FACTORS,
CANCER INCIDENCE OR SURVIVAL.
SO FOR INSTANCE, IT'S NOT
ROUTINELY COLLECTED IN MOST
POPULATION-BASED SURVEYS,
NHANES, NHIS COLLECTS SEXUAL OR
YEN TASTE, THE BRFSS COLLECTS
BOTH SO IT IS NOT WITHOUT ISSUE.
NOT IN CANCER REGISTRIES, COHORT
STUDIES NOT ROUTINELY THERE, NOT
COLLECTED IN PREVENTION AND
TREATMENT TRIALS EITHER. SO
THIS MEANS WE HAVE VERY LITTLE
DATA ON RISK FACTORS, INCIDENCE
AND SURVIVAL.
SO AGAIN I'M GOING TO REPEAT
THROUGHOUT THIS TALK THAT SOGI
ISN'T COLLECTED IN THESE MAJOR
DATA SOURCES, BUT FOR THOSE OF
YOU WHO ARE NOT EPIDEMIOLOGISTS,
YOU MAY WONDER WHY THIS IS SO
IMPORTANT.
SO ONE OF THE BASIC MEASURES
THAT WE USE TO ESTIMATE CANCER
RISK AND TO COMPARE POPULATIONS
IS INCIDENCE.
SO INCIDENCE IS THE NUMBER OF
NEW CASES IN A POPULATION
DIVIDED OVER THE TOTAL
POPULATION.
THEN WE USUALLY GET THE NUMBER
OF NEW CASES FROM CANCER
REGISTRIES AND THEN WE GET THE
TOTAL POPULATION FROM THE
CENSUS.
SO CANCER REGISTRIES DON'T
COLLECT SEXUAL ORIENTATION.
GENDER IDENTITY IS SORT OF
COLLECTED, THOUGH AGAIN, IT CAN
BE PROBLEMATIC.
SEXUAL ORIENTATION CAN SORT OF
BE COLLECTED IN THE CENSUS, SO
THE AMERICAN COMMUNITY SURVEY
ASKS ABOUT SAME SEX PARTNERSHIP
HOUSEHOLDS, BUT THAT DOESN'T
COLLECT THE ENTIRE LGBTQ+
COMMUNITY, AND GENDER IDENTITY
IS NOT COLLECTED AT ALL IN THE
CENSUS.
SO I WANT TO MOVE ON TO SOME OF
THE RISK FACTORS FOR CANCER.
I AM IN THE INFECTIONS AND
IMMUNOEPI BRANCH SO I'M
PARTICULARLY FOCUSED ON
INFECTIONS THAT ARE RELATED TO
CANCER.
THERE'S NOT A LOT OF DATA ON THE
PREVALENCE OF THESE INFECTIONS,
HIV AND HPV IN SEXUAL AND GENDER
MINORITY PEOPLE IN THE UNITED
STATES.
AGAIN, THAT'S BECAUSE WE DON'T
COLLECT SOGI DATA.
BUT I HAVE -- I'M GOING TO
PROVIDE YOU WITH SOME ESTIMATES.
SO JUST A NOTE HERE THAT THE
HASH MARKING FOR TRANS WOMEN,
TRANS MEN, SEXUAL MINORITIES,
CIS WOMEN AND SEXUAL MINORITY
CIS MEN KIND OF -- I'M TRYING TO
INDICATE THE LEVEL OF EVIDENCE
SO THERE'S JUST NOT A LOT OF
EVIDENCE, THERE ARE NOT A LOT OF
LARGE SCALE STUDIES FOR THESE
COMMUNITIES.
AND THEN I USED THE GENERAL
POPULATION OF CISHET MEN AND
WOMEN TO KIND OF COMPARE.
SO THIS IS THE PREVALENCE OF HIV
IN THE POPULATION THAT WE KNOW.
SO IT'S ESTIMATED THAT
APPROXIMATELY 22% OF TRANS WOMEN
IN THE U.S. ARE LIVING WITH HIV.
2 TO 3% OF TRANS MEN HAVE HIV.
THE PREVALENCE OF HIV AMONG
SEXUAL MINORITY MEN IS AROUND
11% AND AROUND LESS THAN 1% FOR
CIS MEN AND CIS WOMEN IN THE
GENERAL POPULATION.
THE PREVALENCE OF HIV AMONG
SEXUAL MINORITY WOMEN IS THOUGHT
TO BE VERY LOW AND I'M NOT
ACTUALLY AWARE OF ANY PREVALENCE
ESTIMATES.
NEXT I'M GOING TO SHOW YOU
PREVALENCE ESTIMATES FOR HPV,
WHICH ALSO DEPEND ON ANATOMIC
SITE THAT WE'RE TALKING ABOUT.
SO FIRST LET'S TALK ABOUT HIGH
RISK ANAL HPV.
ONE STUDY ESTIMATED THAT TRANS
WOMEN HAVE 50% PREVALENCE OF
ANAL HPV, AND THAT SAME STUDY
ESTIMATED A 36% PREVALENCE IN
SEXUAL MINORITY MEN.
WHEN WE TURN NOW TO CERVIX AND
VAGINAL HPV, AND THIS IS HIGH
RISK HPV THAT I'M SHOWING YOU,
ANOTHER STUDY FOUND 20%
PREVALENCE OF HIGH RISK HPV IN
THE NEO VAGINA FOR TRANS WOMEN,
A VAGINA THAT IS CONSTRUCTED FOR
TRANS WOMEN.
IT'S USUALLY MADE OUT OF PENILE
SKIN OR SKIN USED FROM THE
COLON.
AT THIS TIME, IT'S NOT KNOWN
WHAT PERSISTENT HPV INFECTION IN
THE VAGINA OF TRANS WOMEN MEANS,
SO WE REALLY DO NEED TO STUDY
THIS FURTHER.
AND THEN I FOUND ESTIMATES OF
16% PREVALENCE FOR CERVICAL HPV
IN TRANS MASCULINE FOLKS.
13% PREVALENCE FOR SEXUAL
MINORITY WOMEN.
AND THEN 28% FOR CISHET WOMEN.
AND NOW TURNING TO ORAL HPV, WE
SEE THAT THE PREVALENCES ARE
PRETTY SIMILAR ACROSS GROUPS.
WITH CISHET WOMEN HAVING THE
LOWEST PREVALENCE OF ORAL HPV.
AND I WILL NOTE THAT WHAT IS
MISSING HERE IS ANY DATA ON ANAL
HPV IN TRANS MEN OR IN SEXUAL
MINORITY WOMEN, OR ORAL HPV IN
TRANS MEN.
SO I'M GOING TO GO NOW INTO THE
EVIDENCE OF WHY THESE INFECTIONS
ARE IMPORTANT FOR CANCER.
WHILE HPV ITSELF DOES NOT CAUSE
CANCER, IT IS ASSOCIATED WITH A
HIGHER NUMBER OF CANCERS DUE TO
IMMUNOSUPPRESSION, EVEN AMONG
THOSE WHO HAVE ACCESS TO
ANTIVIRAL THERAPY.
SO WORK DONE IN MY BRANCH HAS
SHOWN THAT THERE IS AN INCREASE
OF AIDS-DEFINING MALIGNANCIES
LIKE KAPOSI SARCOMA,
NON-HODGKIN'S LYMPHOMA AND
CERVICAL CANCER.
HIV CAN ALSO INCREASE THE RISK
OF NON-AIDS-DEFINING CANCERS
LIKE ANAL CANCER, HODGKIN'S
LYMPHOMA, LIVER CANCER AND LUNG
CANCER, AND THE CANCERS IN RED
HAVE AN INFECTIOUS ETIOLOGY,
MEANING THAT OTHER VIRAL
INFECTIONS LIKE HPV AND
HEPATITIS ARE IMPORTANT CANCER
RISK FACTORS FOR PEOPLE WITH H
HIV.
THERE HAVE ALSO BEEN STUDIES
THAT SHOW ELEVATED RISK OF THESE
CANCERS AMONG SEXUAL MINORITY
MEN AND HIV, BUT MISSING ARE
ESTIMATES THAT ARE SPECIFIC TO
SEXUAL MINORITY WOMEN OR TO
GENDER MINORITY PEOPLE.
AND I ALSO NOTE THAT HIV ALSO
INCREASES THE RISK OF CANCER
MORTALITY.
WITH REGARDS TO HPV, AN
IMPORTANT CANCER IS ANAL CANCER.
THIS GRAPHIC SHOWS YOU THE
INCIDENCE OF ANAL CANCER IN TWO
DIFFERENT POPULATIONS, SO THOSE
ASSIGNED MALE AT BIRTH WHO HAVE
SEX WITH MEN, MSM ON THE LEFT,
AND NON-MSM ON THE RIGHT.
SO HIV NEGATIVE MSM HAVE A
HIGHER RISK OF ANAL CANCER THAN
HIV NEGATIVE NON-MSM.
AND RISK OF ANAL CANCER THEN
INCREASES AMONG THOSE WHO ARE
LIVING WITH HIV.
SO AS YOU CAN SEE, FOR NON-MSM,
THE INCIDENCE IS AROUND 30 PER
100,000 MEN.
BUT THEN AMONG MSM WITH HIV, THE
RISK INCREASES DRAMATICALLY.
AND I THINK ANAL CANCER IS A
REALLY GREAT EXAMPLE OF WHY SOGI
MEASURES ARE NEEDED IN
POPULATION-BASED STUDIES, AND
CANCER REGISTRIES.
BECAUSE MSM HAVE A GREATER RISK
OF THIS CANCER.
SO ANAL CANCER ESTIMATES ARE
ALSO MISSING FOR SEXUAL MINORITY
WOMEN AND FOR TRANSGENDER AND
GENDER DIVERSE PEOPLE.
HPV IS ALSO RESPONSIBLE FOR
CERVICAL CANCER INCIDENCE AND WE
DON'T HAVE GREAT ESTIMATES OF
THIS CANCER AMONG SEXUAL
MINORITY WOMEN OR TRANS AND
GENDER DIVERSE PEOPLE.
IT'S ALSO RESPONSIBLE FOR ORAL
CANCER INCIDENCE AND I DON'T
THINK WE HAVE GREAT ESTIMATES
FOR SGM PEOPLE ALL TOGETHER.
SO I WANT TO MOVE ON TO RISK
FACTORS FOR SCREEN DETECTABLE
CANCERS.
SO SOME OF THESE RISK FACTORS
FOR THE CANCERS ARE ELEVATED IN
SGM POPULATIONS AND I'VE NOTED
THESE IN RED.
I'VE ALSO NOTED IF THE RISK
FACTOR WAS ELEVATED AND ONLY ONE
POPULATION.
SO FOR BREAST CAN CANCER, THE K
FACTORS ARE ALCOHOL USE, BEING
OVERWEIGHT OR OBESE, LACK OF
PHYSICAL ACTIVITY, NOT HAVING
CHILDREN OR HAVING CHILDREN
AFTER 30 YEARS OF AGE, BIRTH
CONTROL, MENOPAUSAL HORMONE
THERAPY AND GENETICS.
WE DON'T REALLY SEE A DIFFERENCE
IN SCREENING BETWEEN SEXUAL
MINORITY WOMEN AND NON-SEXUAL
MINORITY WOMEN.
THOUGH WE DO KNOW THAT
TRANSGENDER WOMEN ARE LESS
LIKELY TO BE SCREENED.
FOR LUNG CANCER, SMOKING IS A
BIG RISK FACTOR, AS IS GENETICS,
AND WE FIND THAT SGM PEOPLE ARE
MORE LIKELY TO BE ELIGIBLE FOR
THIS SCREENING BUT THEY'RE LESS
LIKELY TO BE SCREENED THAN
CISHET PEOPLE.
FOR COLORECTAL CANCER, ALCOHOL
USE, SMOKING, BEING OVERWEIGHT
OR OBESE, LACK OF PHYSICAL
ACTIVITY, RED MEAT AND GENETICS
ARE RISK FACTORS.
ONE STUDY DIDN'T FIND ANY
SCREENING DIFFERENCES BY SEXUAL
ORIENTATION, BUT THEY DID FIND
THAT TRANSGENDER AND GENDER
DIVERSE PEOPLE ARE LESS LIKELY
TO BE SCREENED.
SO I'M GOING TO SHOW YOU SOME
INCIDENT RATE RATIOS OF THESE
CANCERS AMONG SEXUAL MINORITY
WOMEN.
SO THE INCIDENCE RATE RATIO IS
CALCULATED BY TAKING THE RATIO
OF CANCER INCIDENCE IN ONE
POPULATION OVER THE OTHER.
SO ON THIS GRAPH, IS THE
ESTIMATE IS ABOVE ONE, THAT
MEANS THAT SEXUAL MINORITY WOMEN
HAVE A HIGHER INCIDENCE COMPARED
TO NON-SEXUAL MINORITY WOMEN.
YOU MIGHT THINK, WAIT A MINUTE,
YOU JUST TOLD ME THAT WE CAN'T
GET INCIDENCE RATES BECAUSE THE
DATA IS SO BAD.
SO THE AUTHORS OF THIS ANALYSIS
DID SOME REALLY INTERESTING WORK
WHERE THEY USED DATA FROM
CALIFORNIA WHICH COLLECTS SEXUAL
MINORITY STATUS IN THEIR HEALTH
INTERVIEW SURVEY.
STILL NOT ON THE CANCER
REGISTRY.
INSTEAD, THEY USE THESE DATA TO
ESTIMATE AGE-SPECIFIC POPULATION
DENSITY OF SEXUAL MINORITY
STATUS BY COUNTY.
SO THAT'S WHY INSTEAD OF SHOWING
YOU INCIDENCE RATE FOR LESBIAN
AND BISEXUAL WOMEN, I'M SHOWING
YOU LESBIAN POPULATION DENSITY.
AND I'M ACTUALLY GOING TO TRY TO
BREEZE THROUGH THIS BECAUSE I
ONLY HAVE 2 MINUTES.
BUT HERE IS WHAT WE KNOW ABOUT
BREAST LUNG AND COLORECTAL
CANCER IN THIS POPULATION.
AND THEN HERE IS WHAT WE KNOW
FOR LUNG AND COLORECTAL CANCER
INCIDENCE AMONG SEXUAL MINORITY
MEN.
THE EVIDENCE FOR THESE CANCERS
IN GENDER MINORITY ADULTS IS
ALSO SCARCE BUT THERE IS SOME
DATA THAT COMES FROM A COHORT IN
THE NETHERLANDS AND SO YOU CAN
SEE THAT COMPARED TO CISGENDER
WOMEN, BOTH TRANS WOMEN AND
TRANS MEN, HAVE A DECREASED
INCIDENCE OF BREAST CANCER, BUT
THEN COMPARED TO CISGENDER MEN,
THEY HAVE AN INCREASED RISK OF
BREAST CANCER.
THEN THE LAST CANCER I WANT TO
TALK ABOUT IS PROSTATE CANCER.
THE RISK FACTORS FOR THIS CANCER
ARE ON THE SCREEN, AND PSA IS
THE WAY THAT WE SCREEN FOR THIS
CANCER, AND SEXUAL MINORITY MEN
ARE MORE LIKELY THAN NON-SEXUAL
MINORITY MEN TO PARTICIPATE IN
PSA SCREENING.
AND TRANS WOMEN ARE LESS LIKELY
TO HAVE THIS TESTING DONE.
THEN THE ONLY EVIDENCE THAT WE
HAVE IN THESE POPULATIONS IS FOR
GENDER MINORITY ADULTS, WHERE WE
SEE THAT PROSTATE CANCER RISK IS
MUCH LOWER IN THESE INDIVIDUALS.
I WANT TO JUST LEAVE YOU WITH
SOME THOUGHTS ABOUT BARRIERS TO
CANCER PREVENTION FOR THIS
COMMUNITY.
SO SOME OF THESE INCLUDE THE
FACT THAT THE CLINICIANS LACK
KNOWLEDGE ABOUT SGM-SPECIFIC
NEED, SO A GREAT EXAMPLE IS THAT
SOME PEOPLE BELIEVE THAT SEXUAL
MINORITY WOMEN ARE NOT AT RISK
FOR HPV.
LACK OF SGM SPECIFIC SCREENING
GUIDELINES FOR CANCER, LACK OF
SCREENING MODALITIES THAT TAKE
INTO ACCOUNT THE PATIENT
EXPERIENCE, AND CLINICIANS ARE
OFTEN UNCOMFORTABLE ASKING ABOUT
SEXUAL ORIENTATION, GENDER
IDENTITY AND SECRETARIES YOU'LL
BEHAVIOR.
AND SEXUAL BEHAVIOR.
THESE STATISTICS, THAT 28% OF
TRANSGENDER INDIVIDUALS REPORT
HARASSMENT AND VIOLENCE IN
MEDICAL SETTINGS SHOULD BE VERY
UPSETTING TO US ALL.
AND FINALLY, I WOULD LIKE TO
LEAVE YOU WITH THIS CALL TO
ACTION.
PLEASE START COLLECTING DATA ON
SEXUAL ORIENTATION AND GENDER
IDENTITY.
WE CANNOT STUDY POPULATIONS THAT
WE CANNOT SEE.
AND WITH THAT, THANK YOU VERY
MUCH.
[APPLAUSE]
>>HI, EVERYBODY.
MY NAME IS ASH.
I'M A HEMATOLOGIST AND MEDICAL
ONCOLOGIST, AND I'M QUEER AND
NON-BINARY AND MY WORK FOCUSES
ON IMPROVING EXPERIENCES AND
OUTCOMES FOR TRANSGENDER PEOPLE
WITH CANCER.
I'M HONORED TO HAVE THE
OPPORTUNITY TO SPEAK WITH YOU
TODAY ABOUT IMPROVING DATA
ACCURACY AND MITIGATING BARRIERS
TO CANCER CLINICAL TRIALS FOR
TRANSGENDER PEOPLE.
BASICALLY WHAT I'LL BE TALKING
ABOUT IS THIS, TRYING TO DEBUNK
THE IDEA THAT SEX IS AN I
MUTABLE FACT OF THE BODY AND TO
TRY TO DISENTANGLE SEX AND
GENDER.
SO BEFORE I START, I WANT TO
ACKNOWLEDGE THE COMMUNITY
ADVISORY BOARD OF TRANSGENDER
PEOPLE WITH CANCER WITH WHOM
I'VE HAD THE PRIVILEGE TO WORK
FOR THE LAST FOUR YEARS.
AND I'D LIKE TO PAY A TRIBUTE TO
MY FRIEND LAX, WHO'S RIGHT
THERE, WHO DIED OF MELANOMA
ABOUT A YEAR AGO.
SHE PUBLISHED AN ARTICLE IN THE
"L.A. TIMES" IN WHICH SHE
DESCRIBED HER EXPERIENCES AND
I'LL JUST READ A SHORT SEGMENT
FROM THAT.
SHE WROTE, WHEN I WAS FIRST
DIAGNOSED, I THOUGHT THE WORST
PART OF HAVING CANCER WOULD BE
THE ANXIETY, UNCERTAINTY AND
FEAR ASSOCIATED WITH TREATMENT
AND PROGNOSIS.
INSTEAD I FOUND MYSELF WORRIED
ABOUT THE STIGMA, HARASSMENT AND
STRUCTURAL VIOLENCE PERPETRATED
BY THE MEDICAL SYSTEM I HAD TO
TAKE PART IN TO RECEIVE
TREATMENT.
I FACED DILEMMAS RECEIVING CARE
BECAUSE OF RESPONSES TO BOTH MY
CANCER AND MY TRANSNESS.
PANIC AT THE C WORD BARRED ME
FROM ACCESS TO
TRANSITION-RELATED CARE.
ONCE THEY LEARNED I HAD CANCER,
SOME PROVIDERS SUGGESTED
DISCONTINUING MY HORMONE THERAPY
WITHOUT OFFERING ANY MEDICAL
JUSTIFICATION.
OTHER PROVIDERS WHO WERE
FAMILIAR AND COMFORTABLE
TREATING CANCER HAD NO IDEA HOW
TO INTERACT WITH ME AS A
TRANSGENDER PATIENT.
THE DISCOMFORT AND HOSTILITY
CAME FROM NOT JUST DOCTORS BUT
ALSO NURSES AND OTHER HEALTH
PROFESSIONALS WHO PARTICIPATED
IN MY CARE.
THE DEHUMANIZING DISCRIMINATION
I DEALT WITH INCLUDING HAVING MY
CLOTHES TUGGED ON AND BEING TOLD
I WAS DRESSING INAPPROPRIATELY
FOR WEARING A SKIRT.
AND I CAN TELL YOU THAT KNOWING
LAX IS LIKE A DAY-TO-DAY
EXPERIENCE FOR HER.
SO I WANTED TO GROUND MY TALK
WITH HER COMMENTS, AND TO TELL
YOU THAT HER COMMENTS AND THE
THEORIZING OF THE COMMUNITY
ADVISORY BOARD IN GENERAL IS
WHAT BROUGHT ME TO THE IDEAS
THAT I'LL BE PRESENTING TODAY.
SO MY OBJE OBJECTIVES ARE TO DEE
THE WAY GENDER SEX ASSIGNED AT
BIRTH ANTIOTHER BIOLOGICAL
FACTORS HAVE BEEN CONFLATED IN
MEDICINE GENERALLY IN THE WAYS
THIS LEADS TO CANCER CLINICAL
TRIALS TO EXCLUDE TRANSGENDER
PEOPLE AND ALSO LEADS TO POOR
QUALITY DATA.
AND TO SUGGEST SOME SIMPLE
STRATEGIES TO IMPROVE TRIAL
ACCESSIBILITY AND IMPROVE THE
QUALITY OF OUR DATA.
SO I'LL START WITH SOME SIMPLE
CONCEPTS.
THESE MAY SEEM VERY BASIC BUT I
THINK IN SOME WAYS THEY'RE STILL
VERY CONFUSING TO US AS A FIELD.
SO SEX ASSIGNED AT BIRTH IS THE
DESIGNATION MADE BY A PHYSICIAN,
A DOULA, A NURSE OR A MIDWIFE BY
LOOKING AT THE EXTERNAL
GENITALIA OF A BABY.
SO GENDER IS SOMEONE'S SENSE OF
THEMSELVES AS A MAN, WOMAN,
MASCULINE, FEMININE, ONE OF
THOSE OR MORE THAN ONE OF THEM,
AND THEN ANATOMY ARE THE
INTERNAL AND EXTERNAL STRUCTURES
OF THE BODY.
SO ALTHOUGH THESE ARE OBVIOUSLY
VERY DISTINCT CONCEPTS, SEX
ASSIGNED AT BIRTH AND GENDER ARE
OFTEN MISTAKENLY USED
INTERCHANGEABLY THROUGHOUT OUR
ONCOLOGY LITERATURE, AND
INAPPROPRIATELY USED TO MAKE
ASSUMPTIONS ABOUT ANATOMY,
HORMONAL MILIEU, KARYOTYPE AND
OTHER OBJECTIVE FACTORS.
SO LOOKING AT THE BODY OF A BABY
WE MAKE A LOT OUT OF WHERE I
THINK IN SOME WAYS SEX ASSIGNED
AT BIRTH CAN'T HOLD ALL OF THOSE
CONCEPTS.
SO I'LL GIVE YOU THE EXAMPLE OF
HOW THIS COMES UP IN ELIGIBILITY
CRITERIA IN ONCOLOGY TRIALS AND
THE WAY THIS LEADS TO EXCLUSION
OF TRANSGENDER PEOPLE.
SO THESE ARE REAL INCLUSION AND
EXCLUSION CRITERIA FROM A
PROSTATE CANCER TRIAL AVAILABLE
IN CLINICALTRIALS.GOV.
YOU CAN SEE ONE OF THE INCLUSION
TRY CAREER NA IS BEING MALE.
SO THAT WORD MALE CAN MEAN
DIFFERENT THINGS TO DIFFERENT
PEOPLE.
IT CAN MEAN GENDER, SEX ASSIGNED
AT BIRTH, BUT I CAN IMAGINE IF I
WERE A TRANSGENDER WOMAN LOOKING
AT THIS CRITERIA, I WOULD
RIGHTLY OR WRONGLY THINK THIS
TRIAL IS NOT A TRIAL I WAS
ELIGIBLE FOR.
RELATEDLY THIS COMMENT,
PARTICIPANTS MUST AGREE TO USE A
CONDOM IF HAVING SEX WITH A
WOMAN OF CHILD BEARING POTENTIAL
MAY SIGNAL THAT THAT WE WERE NOT
IN THE INVESTIGATOR'S MIND WHEN
THEY WERE WRITING THEIR TRIAL
CRITERIA BECAUSE THERE ARE
CERTAIN ASSUMPTIONS ASSOCIATED
WITH THE WORD SEX AND ALSO THE
WORD WOMAN THAT PROBABLY DON'T
APPLY TO MANY OF US.
AND THEN THESE TWO EXCLUSION
CRITERIA ALSO MAY INADVERTENTLY
EXCLUDE MANY TRANSGENDER PEOPLE,
SO THERE'S AN EXCLUSION FOR
PRIOR HORMONE THERAPY FOR
PROSTATE CANCER, BUT I CAN
IMAGINE THAT IF I WERE AN
ONCOLOGIST TAKING CARE OF A
TRANSGENDER WOMAN ON ESTROGEN
THERAPY FOR TRANSITION, I
WOULDN'T KNOW WHETHER SHE WAS
ELIGIBLE OR INELIGIBLE FOR THE
TRIAL, AND IF I WERE A TRANS
WOMAN LOOKING AT THESE CRITERIA,
I MIGHT FEEL VERY UNCOMFORTABLE
ASKING.
THEN AS DR. JACKSON TALKED
ABOUT, BLANKET EXCLUSIONS FOR
HIV NECESSARILY EXCLUDE MANY
TRANSGENDER PEOPLE AS 1 IN 10
TRANSGENDER PEOPLE IN THE U.S.
IS LIVING WITH HIV.
BEYOND ACCESSIBILITY TO CLINICAL
TRIALS, ANOTHER ISSUE TO CONTEND
WITH IS THAT TRIALS THAT
CONFLATE SEX, GENDER AND OTHER
BIOLOGICAL FACTORS PRODUCE DATA
THAT ARE UNINTERPRETABLE.
SO FOR EXAMPLE, IF I'M
DESCRIBING A MACHINE LEARNING
ALGORITHM TO DETECT RESIDUAL
TUMOR AFTER NEOADJUVANT
CHEMOTHERAPY IN WOMEN WITH
BREAST CANCER, WHAT DO I MEAN
EXACTLY?
DO I MEAN THAT THIS ALGORITHM
CAN BE USED IN PEOPLE WHO
DESCRIBE THEIR GENDER AS A
WOMAN, OR DO I MEAN PEOPLE WITH
SEX ASSIGNED AT BIRTH FEMALE, OR
DO I MEAN PEOPLE WHO AT SOME
POINT HAD BREAST TISSUE AS A
RESULT OF ENDOGENOUS ESTROGEN?
COULD THIS ALGORITHM BE APPLIED
TO SOMEONE WITH BREAST
AUGMENTATION?
WHAT ABOUT SOMEONE WHOSE SEX
ASSIGNED AT BIRTH WAS MALE WHO'S
BEEN ON ESTROGEN THERAPY?
WHAT ABOUT A TRANSGENDER MEN
WHO'S EITHER HAD OR NOT HAD
SURGERY?
I DON'T KNOW ABOUT YOU BUT I
FIND THIS VERY CONFUSING.
RECENTLY A STUDY WAS PUBLISHED
IN THE JOURNAL OF THE NATIONAL
CANCER INSTITUTE THAT ASSESSED
ANTICANCER THERAPIES THAT
RECEIVED FDA APPROVAL BETWEEN
2012 AND 2019.
AND NONE OF THE STUDIES, NOT A
SINGLE ONE OF THE STUDIES,
DESCRIBED HOW THEIR VARIABLE SEX
AND GENDER WERE COLLECTED.
IN OTHER WORDS, WHO GETS TO
DECIDE WHAT THE SEX OR GENDER OF
THE PARTICIPANTS WERE.
AND THREE QUARTERS OF THOSE
STUDIES USED THE TERMS SEX AND
GENDER INTERCHANGEABLY OR
INCONSISTENTLY, SO FOR A FIELD
THAT'S VERY FOCUSED ON PRECISION
MEDICINE, THIS IS ONE AREA IN
WHICH WE'RE BEING QUITE
IMPRECISE AND IT'S LEADING TO
VERY DIFFICULT TO INTERPRET
DATA.
BEYOND THE QUESTION OF
CONFLATING SEX AND GENDER,
THERE'S ALSO THE QUESTION OF
WHAT DOES SEX TELL US EXACTLY.
SO SEX IS OFTEN CONSIDERED TO BE
A FACT OF THE BODY.
BY THIS, WE OFTEN MEAN THE SEX
ONE WAS ASSIGNED AT BIRTH AND
WHAT WE, THEREFORE, ASSUME ABOUT
THEIR ANATOMY, HORMONES AND
KARYOTYPE.
HOWEVER, 1% OF THE POPULATION IS
BORN WITH OR DEVELOPS ANATOMY OR
A HORMONAL MILIEU THAT DOES NOT
CORRESPOND TO WHAT WAS PRESUMED
BASED ON THEIR SEX ASSIGNED AT
BIRTH AND MANY PEOPLE UNDERGO
CHANGES TO THEIR ANATOMY OR
HORMONES THROUGHOUT THEIR LIVES.
SO WHEN WE COLLECT DATA ABOUT
SEX, AND ASSESS ASSOCIATIONS
BETWEEN SEX AND DISEASE, WE'RE
USING SEX AS A PROXY FOR OTHER
FACTORS INCLUDING STIGMA,
HORMONES, ANATOMY AND BODY SIZE,
AND WITHOUT MORE SPECIFIC DATA,
WE DON'T KNOW WHAT WE'RE
ACTUALLY ASSESSING.
SO WHEN WE COLLECT CONFLATED
VARIABLES ON OUR TRIALS, WE
DEVELOP DATA THAT'S DIFFICULT TO
INTERPRET, AND THEN WE'RE FORCED
TO DEVELOP ONCOLOGY GUIDELINES,
LABORATORY REFERENCE RANGES, AND
DRUG DOSING BASED ON THESE
CONFLATED VARIABLES THAT WE
CAN'T EX-TR EXTRAPOLATE TO TRANS
PEOPLE BUT I THINK ARE ALSO
IMPRECISE FOR EVERYBODY.
SO FOR EXAMPLE, LABORATORY
REFERENCE RANGES ARE DETERMINED
BASED ON LARGE PROBABILITY
STUDIES OF PEOPLE ASSUMED TO BE
CISGENDER WOMEN.
SO THEY'RE AVERAGES.
THEY DON'T TELL US WHAT'S
NORMALLY PATHOLOGIC, JUST WHAT'S
AVERAGE.
SO FOR EXAMPLE, WE KNOW IN THESE
STUDIES AND OUR REFERENCE RANGES
ARE BASED ON THEM, THAT
CISGENDER WOMEN AND OTHER
NON-TRANSGENDER WOMEN HAVE A
LOWER HEMOGLOBIN THAN CISGENDER
MEN.
BUT WE DON'T KNOW IF THAT'S
NORMAL OR NOT NORMAL, SO FOR
EXAMPLE, MAYBE THE REASON THAT
CISGENDER WOMEN HAVE A LOWER
HEMOGLOBIN THAN CISGENDER MEN IS
BECAUSE A LOT OF PEOPLE WHO ARE
CISGENDER WOMEN ARE
IRON-DEFICIENT.
AND SO WHEN WE'RE COMPARING A
PATIENT WHO COMES IN TO OUR
OFFICE TO THESE REFERENCE
RANGES, WE MAY JUST BE MISSING
IRON DEFICIENCY IN A LARGE
POPULATION OF CISGENDER WOMEN.
ALSO, TRANSGENDER PEOPLE OFTEN
HAVE LABORATORY REFERENCE RANGES
THAT FALL OUTSIDE OF THOSE
CATEGORIZED AS NORMAL FOR
CISGENDER MEN OR WOMEN, SO TRANS
PEOPLE OFTEN HAVE LABS THAT ARE
PERSISTENTLY FLAGGED AS
ABNORMAL, WHICH THEY MAY OR MAY
NOT BE.
SO FOR EXAMPLE, A TRANSGENDER
MAN IN ONE OF OUR QUALITATIVE
STUDIES SAID THEY HAVE ME LISTED
AS A FEMALE FOR MY LAB LEVELS SO
THEY'RE ALWAYS A LITTLE BIT OFF.
AND I'M LIKE, IS THIS NORMAL?
AND HE DOESN'T KNOW AND PROBABLY
HIS CLINICIAN OFTEN DOESN'T KNOW
EITHER.
SO ALSO AN AREA OF GREAT CONCERN
IS THAT THERE ARE SOME
CHEMOTHERAPEUTIC AGENTS WE DOSE
BASED ON CREATININE CLEARANCE
WHICH IS BASED ON A SEX OR
GENDER MARKER AND WE DO NOT HAVE
ROBUST DATA ABOUT HOW THESE
ALGORITHMS APPLY OR DON'T APPLY
TO TRANSGENDER PEOPLE ON OR OFF
HORMONE THERAPY.
SO WE MAY BE UNDER OR OVERDOSING
CARBOPLATIN IN MANY TRANSGENDER
PEOPLE.
SO HOW CAN WE DO THINGS
DIFFERENTLY?
SO THERE'S SOME REALLY SIMPLE
THINGS WE CAN DO.
SO FOR ONE THING, OFTEN THE
WORDS MALE AND FEMALE, MEN AND
WOMEN, CAN BE JUST TAKEN OUT OF
ELIGIBILITY CRITERIA AND
ONCOLOGY GUIDELINES AS WELL AND
JUST BE REPLACED WITH THE WORD
"PEOPLE."
IN ADDITION, WE CAN REPLACE
WORDS THAT CONTAIN A LOT OF
ASSUMPTIONS WITH MORE PRECISE
LANGUAGE, SO IF WE'RE TALKING
ABOUT SEX THAT COULD RESULT IN A
PREGNANCY, WE CAN JUST SAY SEX
THAT COULD RESULT IN A PREGNANCY
AND WE CAN TAKE GENDER OUT OF
THE EQUATION ENTIRELY.
IF WE HAVE EXCLUSIONS IN OUR
TRIALS FOR HORMONE THERAPY, WE
CAN BE EXPLICIT ABOUT WHETHER OR
NOT HORMONE THERAPY FOR THE
PURPOSES OF GENDER TRANSITION IS
RELEVANT.
AND INSTEAD OF BLANKET
EXCLUSIONS FOR HIV, WE CAN
EXCLUDE BASED ON THINGS THAT
WE'RE ACTUALLY WORRIED ABOUT,
LIKE IMMUNOSUPPRESSION OR
DRUG-DRUG INTERACTIONS.
WE CAN BEGIN TO COLLECT
MEANINGFUL DATA, SO INSTEAD OF
OR IN ADDITION TO SEX AND GENDER
DATA, WE CAN COLLECT DATA ABOUT
BODY SURFACE AREA, MUSCLE MASS,
ANATOMY, HORMONE LEVELS, AND
CHROMOSOMES, AND WE CAN DEVELOP
REFERENCE RANGES AND OTHER
IMPORTANT INFORMATION BASED ON
THINGS THAT WE CAN MEASURE IN A
VARIETY OF PEOPLE, INCLUDING
TRANSGENDER PEOPLE.
WE ALSO WANT TO ENSURE THAT OUR
CANCER CLINICAL TRIALS ARE
ACCESSIBLE TO TRANSGENDER
PEOPLE, AND THE BEST WAY TO DO
THAT IS TO MEET THE NIE NEEDS OF
TRANSGENDER, SO QUALITATIVE DATA
WITH TRANSGENDER SUGGESTS WE'RE
MORE LIKELY TO PARTICIPATE IN
CLINICAL TRIALS WHEN THERE ARE
TRANS INVESTIGATORS OR
TRANSGENDER RESEARCH STAFF, WHEN
THERE'S A CLEAR BENEFIT TO TRANS
COMMUNITIES, WHEN RESOURCES ARE
PROVIDED LIKE TRANSPORTATION AND
HOUSING.
AND WHEN TRIALS ARE INTEGRATED
INTO THE HEALTHCARE THAT WE'RE
ALREADY RECEIVING.
COMMUNITY-BASED PARTICIPATORY
RESEARCH, RECRUITMENT OF
TRANSGENDER PEOPLE AT
TRANS-SERVING AGENCIES AND USING
ONLINE RECRUITMENT HAVE ALSO
BEEN EFFECTIVE MEANS OF ENGAGING
TRANS PEOPLE IN CLINICAL TRIALS.
SO IN CONCLUSION, LET'S ALL
THINK ABOUT HOW WE CAN
DISENTANGLE SEX, GENDER AND
OTHER BIOLOGICAL FACTORS, ENSURE
ACCESSIBLE ELIGIBILITY CRITERIA,
COLLECT MEANINGFUL DATA, AND
ENGAGE TRANSGENDER COMMUNITIES.
THANK YOU SO MUCH FOR YOUR
ATTENTION.
[APPLAUSE]
>>HELLO.
MY NAME IS MEGAN MULLINS AND MY
PRONOUNS ARE SHE/HER.
I'M HAPPY TO BE HERE WITH YOU
ALL TODAY TO TALK A LITTLE BIT
ABOUT CANCER CARE IN SEXUAL AND
GENDER MINORITY POPULATIONS
LOOKING BOTH AT WHERE WE ARE
CURRENTLY AND WHERE WE MIGHT BE
ABLE TO GO.
SO IN MY TALK TODAY, I'LL
DESCRIBE SOME KNOWN DISPARITIES
IN CANCER CARE, SUMMARIZE SOME
OF THE DRIVERS OF CARE
INEQUITIES FOR SEXUAL AND GENDER
MINORITY INDIVIDUALS, AND
PROPOSE SOME POTENTIAL SOLUTIONS
TO IMPROVING INCLUSIVENESS AND
QUALITY OF CANCER CARE.
SO YOU KNOW, WHEN WE THINK ABOUT
THE INCREASINGLY COMPLEX
LANDSCAPE OF CANCER CARE
DELIVERY, ALONGSIDE THE
INCREASINGLY COMPLEX POLITICAL
LANDSCAPE THAT SEXUAL AND GENDER
MINORITY INDIVIDUALS FACE, I
THINK IT'S A CRITICAL TIME TO BE
ASKING WHERE ARE WE IN OUR
ABILITY TO PROVIDE HIGH QUALITY
CANCER CARE TO THESE
POPULATIONS.
AND AS MY CO-PANELISTS HAVE
EMPHASIZED, I THINK WE ARE
REALLY IN A PLACE WHERE IT'S
DIFFICULT TO ANSWER THAT
QUESTION.
WHEN WE LOOK AT THE LITERATURE,
WE SEE THAT MOST STUDIES OF
CANCER AND SEXUAL AND GENDER
MINORITIES ARE FOCUSED ON BREAST
AND PROSTATE CANCER, THEY'RE
OVERWHELMINGLY CONDUCTED IN
CISGENDER POPULATIONS, AND THOSE
POPULATIONS ARE OVERWHELMINGLY
WHITE.
SO WE HAVE HUGE GAPS IN THE
LITERATURE IN TERMS OF OTHER
TYPES OF CANCER, INTERSECTIONAL
IDENTITIES AND HOW ALL OF THESE
COME TOGETHER TO IMPACT PEOPLE'S
EXPERIENCES OF CANCER CARE.
REALLY THE MAJOR DRIVER FOR WHY
OUR LITERATURE IS LIMITED IS
THAT WE ARE NOT COLLECTING SOGI
DATA.
I'M GOING TO KEEP BEATING ON
THAT POINT.
IF WE LOOK AT THE NCI'S
COMMUNITY ONCOLOGY RESEARCH
PROGRAM, LESS THAN 20% OF
PRACTICE GROUPS REPORTED
COLLECTING SOGI DATA IN THE 2017
LANDMARK SURVEY.
AND THIS WAS PARTICULARLY
STRIKING TO ME BECAUSE THE
MAJORITY OF CANCER CARE IN THE
UNITED STATES IS DELIVERED IN
COMMUNITY ONCOLOGY SETTINGS, YET
MOST OF THE RESEARCH THAT WE'RE
DOING IN SEXUAL AND GENDER
MINORITY COMMUNITIES ARE
HAPPENING AT ACADEMIC MEDICAL
CENTERS.
AND SO IT WAS IMPORTANT TO ME TO
TRY TO FIGURE OUT SOME OF WHAT
WAS DRIVING THE LOW DATA
COLLECTION RATES OR THE NCOR,
AND SO WORKING WITH NRG
ONCOLOGY, I CONDUCTED A PILOT
STUDY TO EVALUATE BARRIERS TO
SOGI DATA COLLECTION.
WE DID QUALITATIVE INTERVIEWS
WITH ONCOLOGY PHYSICIANS,
ADVANCE PRACTICE PROVIDERS AND
MEMBERS OF THEIR STAFF INVOLVED
IN DEMOGRAPHICS COLLECTION, AND
BASED ON OUR THEMATIC ANALYSIS,
THIS DIAGRAM SHOWS HOW WE SEE
MANY OF THE IMPORTANT THEMES
RELATING TOGETHER.
SO UNDERLYING OUR FAILURE TO
COLLECT SOGI DATA IS REALLY A
LACK OF UNDERSTANDING OF HOW
SEXUAL ORIENTATION AND GENDER
IDENTITY RELATE TO HIGH QUALITY
ONCOLOGY CARE.
MOST OF THE PHYSICIANS THAT I
SPOKE TO WERE INSISTENT THAT
KNOWING SOMEONE'S SEXUAL
ORIENTATION WOULD NOT CHANGE THE
CARE THEY PROVIDED, AND SO THEY
DIDN'T NEED TO KNOW IT.
THEY WERE A LITTLE BIT MORE
FLEXIBLE ON GENDER IDENTITY
BECAUSE THAT WOULD LET THEM KNOW
THE CORRECT PRONOUNCE TO USE AND
EVERYONE WANTED TO BE RESPECTFUL
OF THEIR PATIENTS.
BUT THAT SEPARATION OF PATIENT
IDENTITY FROM PROVISION OF CARE
IS PERPETUATING A CULTURE OF CIS
HETERONORMTIVITY IN OUR CLINICAL
SPACES.
BASICALLY MEANING THAT WE'RE
ASSUMING THAT MOST PEOPLE WHO
COME THROUGH ARE CISGENDER AND
HETEROSEXUAL, AND WE FAIL TO
ACCOUNT FOR DIFFERENT IDENTITIES
THAT MAY PRESENT.
SO MOST OF MY INTERVIEW
PARTICIPANTS DESCRIBE SITUATIONS
WHERE THEY HAD THAT ONE PERSON
THAT STOOD OUT IN THEIR MEMORY
WHO WAS TRANSGENDER THAT PERHAPS
SHOWED UP TO A GYNECOLOGIC
ONCOLOGY CLINIC, AND IT TOOK
GREAT LENGTHS TO NAVIGATE THEM
TO THE CARE THAT THEY NEEDED AND
MAKE SURE THAT THEY WERE TREATED
RESPECTFULLY.
AND SO THIS TYPE OF CULTURE
REALLY CONTRIBUTES TO SEVERAL
THINGS SPECIFIC TO SOGI DATA
COLLECTION.
ONE BEING THAT MANY PLACES STILL
DO NOT HAVE DISCRETE FIELDS IN
THE EMR TO COLLECT THIS DATA.
FOR THOSE THAT DO HAVE DISCRETE
FIELDS, MOST PEOPLE COULD NOT
TELL ME WHERE THEY WERE, AND SO
EVEN IN PLACES WHERE A CLINICAL
STAFF MEMBER MAY HAVE BEEN VERY
EXCITED THAT THEY WERE DOING
THIS GREAT SOGI DATA COLLECTION,
WHEN I TALKED TO THE ONCOLOGIST,
THEY DIDN'T KNOW WHERE THAT
INFORMATION WAS IN THE EMR TO BE
ABLE TO USE IT IN THEIR CLINIC
VISIT.
SIMILARLY THERE'S A LOW PRIORITY
FOR THIS INFORMATION, SO PEOPLE
ARE NOT BEING ASKED TO COLLECT
THE FIELD IN THE EMR EVEN WHEN
THEY ARE PRESENT, AND THERE'S AN
UNDERLYING DISCOMFORT OF
ENGAGING BOTH WITH DATA
COLLECTION AND I THINK THESE
TERMS MORE BROADLY.
AND I THINK THAT REALLY CAME
FROM TWO PLACES.
SO ONE IS, WHEN WE DECOUPLE
IDENTITY FROM PROVIDING CARE,
THEN THERE'S THE SENSE THAT
ASKING THESE QUESTIONS ARE
REALLY INTRUSIVE AND
UNNECESSARY, WHICH CREATES
DISCOMFORT.
THE OTHER IS THAT REALLY
SOMEBODY DESCRIBED IT AS A
MUSCLE THAT PEOPLE ARE NOT USED
TO FLEXING.
SO FOR MANY PEOPLE, THESE TERMS
ARE DIFFERENT, DOING THINGS LIKE
OFFERING YOUR PRONOUNCE IS NEW,
AND IT'S NOT SOMETHING THAT
THEY'RE USED TO PRACTICING.
AND SO IT'S SOMETHING THAT WE
CAN NORMALIZE IN PRACTICE AND
USE TO PROMOTE SOGI DATA
COLLECTION.
SO I WALK THROUGH THESE THINGS
TODAY NOT TO MAKE YOU ALL EXPERT
SOGI DATA COLLECTORS, ALTHOUGH I
HOPE AFTER OUR PANEL, YOU ALL
WILL BE.
BUT REALLY, BECAUSE I THINK THE
SAME TYPES OF THINGS ARE
UNDERLYING THE DISPARITIES THAT
WE SEE IN PROVISION OF CARE.
SO WHEN WE LOOK AT KNOWN
DISPARITIES, THERE'S A LACK OF
CULTURALLY COMPETENT CARE FOR
SEXUAL AND GENDER MINORITY.
ONE EXAMPLE IS UNADDRESSED
SEXUAL HEALTH CONCERNS.
SO THIS IS NOT UNIQUE TO SEXUAL
AND GENDER MINORITY POPULATIONS.
LESS THAN 10% OF CANCER
SURVIVORS IN THE UNITED STATES
ARE ASKED ABOUT THEIR SEXUAL
HEALTH NEEDS, SO THIS IS A
GLARING GAP IN OUR PROVISION OF
CON KONCOLOGY CARE, AND I'M HOPL
THAT AS WE NORMALIZE THINGS LIKE
SOGI DATA COLLECTION AND CREATE
MORE SPACE FOR PEOPLE TO BRING
THEIR WHOLE SELVES INTO THEIR
CANCER CARE EXPERIENCE, WE CAN
ALSO IMPROVE COMFORTABILITY OF
TALKING ABOUT SEXUALITY AT ALL
IN ONCOLOGY SETTINGS.
BUT WHAT IS UNIQUE HERE IS THAT
PARTICULARLY FOR MEN WHO HAVE
SEX WITH MEN, THERE ARE HIGHER
RATES OF UNADDRESSED SEXUAL
HEALTH CONCERNS, LARGELY BECAUSE
IF THEY GO TO THEIR PROVIDER AND
ATTEMPT TO TALK ABOUT THEIR
CONCERNS OR UNIQUE NEEDS,
THEY'RE MET WITH DISCOMFORT OR
PEOPLE WHO CANNOT HAVE A
CONVERSATION OR PROVIDE
RESOURCES.
OFTEN MANY OF THE PATIENT-FACING
EDUCATIONAL MATERIALS ARE
WRITTEN TOWARDS AN AUDIENCE OF
MEN WHO HAVE SEX WITH WOMEN.
SO I THINK THIS IS AN IMPORTANT
PLACE WHERE WE COULD USE
TAILORED RESOURCES THAT COULD
REALLY PROVIDE A LOT OF BENEFIT
FOR PEOPLE IN BEING ABLE TO
ADDRESS THEIR CONCERNS.
AND I WILL NOTE FOR PROSTATE
CANCER, THERE ARE GUIDELINES
THAT HAVE COME OUT RELATED TO
SEXUAL HEALTH AND THEY DO
INCLUDE RECOMMENDATIONS FOR
SEXUAL AND GENDER MINORITIES, SO
THAT'S A GREAT RESOURCE TO HAVE.
AND THEN AS DR. ALPERT MENTIONED
WITH TRIALS, SIMILARLY IN
CLINICAL PLACE, WE HAVE GENDERED
AND HETERONORMATIVE LANGUAGE,
ASSUMPTIONS ABOUT HOW PATIENTS
MAY BE RELATED TO THE PERSON
THAT'S ON THE VISIT WITH THEM IN
THE ROOM, AND ASKING WHO HAVE
YOU BROUGHT WITH YOU TODAY, HOW
WOULD YOU LIKE ME TO ADDRESS
THEM, RATHER THAN ASSUMING A
PARTICULAR RELATIONSHIP.
THEN FINALLY, WE KNOW THERE ARE
KNOWLEDGE GAPS.
SO SURVEYS OF CLINICAL CARE
PROVIDERS INCLUDING NURSES,
ADVANCED PRACTICE PROVIDERS, AND
PHYSICIANS, ALL INDICATE THAT
WHILE PEOPLE ARE COMFORTABLE
PROVIDING CARE FOR SEXUAL AND
GENDER MINORITIES, THEY DON'T
KNOW AS MUCH AS THEY WOULD LIKE
TO, AND THEY STATE A WILLINGNESS
TO LEARN MORE.
SO I THINK THAT'S AN IMPORTANT
OPPORTUNITY FOR US TO PROVIDE
EDUCATION WHEN WE CONSIDER THAT
IN U.S. MEDICAL CURRICULUM, I
THINK THE MEDIAN IS ZERO TO
5 HOURS AROUND LGBT HEALTH, AND
33% OF MEDICAL SCHOOLS SAID OF
THOSE HOURS, ZERO OF THEM WERE
CLINICAL HOURS.
THEN FINALLY, WE DO HAVE A
ROBUST LITERATURE SHOWING POORER
MENTAL HEALTH OUTCOMES AROUND --
IN SEXUAL AND GENDER MINORITY
CANCER SURVIVORS COMPARED TO
THEIR CISGENDERRED AND
HETEROSEXUAL COUNTERPARTS.
AND I THINK THIS MENTAL HEALTH
EXAMPLE IS AN IMPORTANT
OPPORTUNITY TO REALLY STRESS THE
IMPORTANCE OF DEAGGREGATING
THESE GROUPS WHENEVER POSSIBLE.
SO WE KNOW THAT WOMEN WHO HAVE
SEX WITH WOMEN ARE MORE LIKELY
TO BE IN PARTNERED RELATIONSHIPS
THAT CAN PROVIDE SOURCES OF
COMFORT AND RESILIENCE THROUGH
SOMEONE'S CANCER TREATMENT
EXPERIENCE.
THAT'S VERY DIFFERENT FROM MEN
WHO HAVE SEX WITH MEN WHO ARE
MORE COMMONLY NOT PARTNERED AND
EXPERIENCE HIGHER RATES OF
SOCIAL ISOLATION AND DEPRESSION.
THEN WHEN WE LOOK AT DISTRESS,
WHILE SEXUAL AND GENDER
MINORITIES HAVE DISTRESS LEVELS
THAT ARE 3 TO 6 TIMES HIGHER
THAN THEIR CISGENDERED
HETEROSEXUAL COUNTERPARTS, IF WE
COMPARE TRANS INDIVIDUALS TO
THEIR SEXUAL MINORITY
CISGENDERED COUNTERPARTS, WE SEE
HIGHER DISTRESS AMONG TRANS
FOLKS.
AND SO I THINK RECOGNIZING THAT
ALL OF THESE GROUPS HAVE
DIFFERENT CHARACTERISTICS THAT
WE NEED TO CONSIDER AS WE MOVE
THIS RESEARCH FORWARD IS
CRITICAL.
AND REALLY MUCH OF THE MENTAL
HEALTH OUTCOMES COME FROM THE
EXPERIENCES OF DISCRIMINATION
AND STIGMA THAT HAVE BEEN
MENTIONED THROUGHOUT THIS PANEL
TODAY.
AND SO I THINK THAT REALLY
CREATES A PRESSING NEED TO
CONSIDER THE ROLE OF HEALTHCARE
IN DEVELOPING A TRUSTWORTHY
ENVIRONMENT FOR PEOPLE,
PARTICULARLY IN ONCOLOGY.
AND I THINK ONE WAY TO DO THAT
IS TO REALLY BRIDGE THIS GAP
BETWEEN PATIENT IDENTITIES AND
ONCOLOGY CARE.
SO IN THE GREEN BOX, THIS IS A
QUOTE FROM MY STUDY, WHERE AN
ONCOLOGIST TOLD ME, YOU KNOW, I
HAVE TO ADMIT I DON'T ROUTINELY
ADDRESS SEXUAL ORIENTATION
DURING MY VISITS, BECAUSE
USUALLY I'M SEEING, I'M KIND OF
FOCUSED ON THE CANCER ISSUE.
SO THERE'S A CLEAR DELINEATION
THERE BETWEEN THE PATIENT'S
IDENTITY AND WHAT NEEDS TO
HAPPEN IN THIS VISIT, BUT THAT'S
IN DIRECT CONTRAST TO WHAT WE
SEE IN THE PATIENT LITERATURE.
THIS QUOTE IS FROM A STUDY THAT
WAS DONE BY KATZ IN 2009 OF
INTERVIEWS OF MINORITY CANCER
SURVIVORS, WHERE EVERY
PARTICIPANT SAID IT WAS VERY
IMPORTANT THAT THEIR ONCOLOGY
PROVIDER KNOW THEIR SEXUAL
ORIENTATION BECAUSE IT WAS
INTEGRAL TO WHO THEY WERE, AND I
THINK THIS QUOTE ILLUSTRATES
THAT.
A WOMAN SAID, IT WAS IMPORTANT
"TO NOT BE DANCING AROUND WITH
WHO I AM AS A PERSON AND WHO MY
SUPPORT PEOPLE ARE."
AND SO I THINK PATIENTS WANT TO
HAVE A SAFE SPACE TO BE
THEMSELVES IN THEIR VISITS.
AND TO HAVE THEIR RELATIONSHIPS
RESPECTED THE WAY THAT OTHER
HETEROSEXUAL RELATIONSHIPS MIGHT
BE.
AND I THINK THAT WHEN WE -- WE
CAN DO THAT, WE SEE THAT THERE
ARE BETTER OUTCOMES FOR THE
CANCER AS WELL.
SO DISCLOSING A SEXUAL AND
GENDER MINORITY IDENTITY IN A
CULTURALLY COMPETENT ENVIRONMENT
IS ASSOCIATED WITH IMPROVED
OUTCOMES INCLUDING BETTER MENTAL
HEALTH, LESS ANXIETY, AND LESS
ILLNESS INTRUSIVENESS.
IT'S ALSO BEEN ASSOCIATED WITH
SATISFACTION WITH CARE, AND WE
ALSO KNOW THAT CANCER SURVIVORS
WHO REPORT PROVIDERS THAT ARE
LESS LGBT-COMPETENT HAVE MORE
UNMET SURVIVORSHIP NEEDS AND
HIGHER RATES OF PTSD ASSOCIATED
WITH THEIR CANCER.
SO WHEN WE TAKE ALL OF THIS
TOGETHER, WHERE CAN WE GO?
I THINK MAYBE THE QUESTION IS
REALLY WHERE SHOULD WE GO.
I WOULD SAY THE FIRST STEP IS
REALLY SOGI DATA COLLECTION.
IT'S NOT AS SIMPLE AS JUST
SLAPPING THESE QUESTIONS ON YOUR
STUDY OR ON YOUR INTAKE FORMS,
BUT IT'S REALLY CRITICAL THAT WE
HAVE LEADERSHIP SUPPORT,
TRAINING, AND A SAFE ENVIRONMENT
BEFORE WE ASK PEOPLE TO DISCLOSE
THEIR IDENTITIES.
IF WE DON'T DO THIS, I THINK
WE'LL RUN INTO A SITUATION WHERE
WE'RE GETTING DATA THAT'S NOT
VERY MEANINGFUL AND LOTS OF
CHOOSE NOT TO DISCLOSE
RESPONSES.
SO THERE ARE SEVERAL WAYS TO
SUPPORT THIS.
THERE ARE MANY OPTIONS FOR
TRAINING REFLECTING LGBT
CULTURAL COMPETENCE, BUT I THINK
WHAT'S PROBABLY MORE IMPORTANT
IS TRAINING AND A GENERAL SHIFT
TOWARDS CULTURAL HUMILITY, WHICH
REALLY ENTAILS LOOKING AT OUR
OWN BIASES AND HOW THEY MIGHT
IMPACT INTERACTIONS IN THE
CLINICAL CARE SETTING, AND
MAINTAINING A SPIRIT OF
CURIOSITY ABOUT PATIENTS AND
THEIR IDENTITIES AND THEIR
PREFERENCES.
AND IT'S MY HOPE THAT IF WE CAN
GROW THAT TYPE OF CULTURE, IT
WILL IMPROVE CLINICAL CARE NOT
ONLY FOR SEXUAL AND GENDER
MINORITIES, BUT OTHER PEOPLE WHO
HAVE DIFFERENCES THAT MATTER TO
THEIR CARE THAT THEY WANT TO
SHARE WITH THEIR CLINICAL
PROVIDERS, AND I THINK THAT
WOULD OPEN THE DOOR FOR ALL OF
US TO MOVE TOWARDS MORE PATIENT
PATIENT-CENTERED CARE IN
ONCOLOGY.
[APPLAUSE]
>>SO FOR THE VIRTUAL AUDIENCE,
PLEASE SUBMIT YOUR QUESTIONS FOR
THE PODIUM DISCUSSION.
>>WE HAVE ABOUT 20 MINUTES FOR
THE PANEL, 25 MINUTES.
WE'VE HEARD A LOT ABOUT SOGI
DATA COLLECTION AND SO I JUST
WANT TO MENTION THAT NIH
COMMISSIONED THE NATIONAL
ACADEMY OF SCIENCES, ENGINEERING
AND MEDICINE TO DO A REPORT ON
WHAT KINDS OF ITEMS SHOULD BE
USED IN RESEARCH, AND IF YOU'RE
THINKING ABOUT MEASURING SOGI IN
RESEARCH, I ENCOURAGE YOU TO
LOOK AT THAT REPORT.
THE ITEMS ARE NOT PERFECT, BUT
UNFORTUNATELY, WE NEED TO
STANDARDIZE THE ITEMS A LITTLE
BIT TO START GATHERING A VOLUME
OF DATA, SO I THINK THE
QUESTIONS ARE EVOLVING, BUT THE
NASEM REPORT INVOLVES SOME
STANDARDISH ITEMS THAT WE REALLY
ENCOURAGE PEOPLE TO LOOK AT.
AND I HAVE SOME QUESTIONS FOR
THE PANELISTS BUT I SEE PEOPLE
STANDING IN FRONT OF ME SO I'M
GOING TO START WITH THE PERSON
UP HERE.
AND IF YOU COULD SAY YOUR NAME
AND WHERE YOU'RE FROM, THAT
WOULD BE TERRIFIC.
>>JASMINE MCDONALD, COLUMBIA
UNIVERSITY.
I HAD A QUESTION KIND OF
REFLECTING OFF OF YESTERDAY'S
SESSION ON PERSISTENT POVERTY
AREAS AND THEN DR. MA CAN THE TT
PLACE AND RACE.
SO WONDERED IF THERE'S BEST
PRACTICES NOT JUST BASED OFF OF
SOGI, BUT THE INTERSECTIONAL
IDENTITY WITHIN SOGI.
AND I IMAGINE THAT SOMEONE
COMING IN WITH A, I GUESS, NOT A
NORMATIVE IDENTITY BUT ALSO
BEING OF ORIGINAL ETHNIC OR
BEING RURAL COMMUNITIES, SO ARE
THERE BEST PRACTICES RELATED TO
THAT INTERSECTIONALITY FOR THE
POPULATION IN GENERAL?
>>SO THIS IS A VERY GENERAL
ANSWER, I GUESS, IN SOME WAYS,
BUT I THINK WHAT IT MAKES ME
THINK OF IS JUST I THINK THAT A
THING TO REMIND US ALL --
ESPECIALLY WHEN WE'RE TALKING
ABOUT SOGI DATA COLLECTION, IS
THAT TRANS PEOPLE IN PARTICULAR,
TRANS PEOPLE OF COLOR IN
PARTICULAR ARE FACING A HUGE
BURDEN OF VIOLENCE, INCLUDING A
LACK OF SAFETY IN MEDICAL
SETTINGS.
SO I THINK IT'S -- I MEAN, I
THINK DR. MULLINS TALKED ABOUT,
YOU KNOW, INTRODUCING YOURSELF
AND SAYING, LIKE, HI, I'M
DR. SO-AND-SO, MY PRONOUNCE ARE
SUCH AND SUCH, HOW WOULD YOU
LIKE ME TO REFER TO YOU AND WHAT
ARE YOUR PRONOUNCE, AND
UNDERSTANDING THAT PEOPLE ARE
GOING TO HAVE REALLY DIFFERENT
LANGUAGE ABOUT HOW THEY DESCRIBE
THEMSELVES.
AND A DIFFERENT AMOUNT OF NEED
TO TALK ABOUT OR NOT TALK ABOUT
THAT, SO RECENTLY WE DID A
QUALITATIVE STUDY AND WE LOOKED
AT PEOPLE'S EXPERIENCES SHARING
BEING TRANS WITH CLINICIANS,
EITHER JUST TELLING CLINICIANS
THAT THEY WERE TRANS OR TELLING
THEM THEY WERE ON HORMONES OR
TELLING THEM THEY HAD HAD
SURGERIES, AND PEOPLE OFTEN HAD
REALLY POOR EXPERIENCES AFTER
EXPRESSING THESE THINGS TO THEIR
CLINICIANS OR JUST HAVING THEM
IN THEIR CHARTS.
SO I THINK THERE'S A BALANCE
WHEN -- WE REALLY NEED DATA
ABOUT SEXUAL AND GENDER MINORITY
COMMUNITIES, BUT WE ALSO REALLY
NEED TO THINK FIRST AND FOREMOST
ABOUT THE SAFETY OF OUR
PATIENTS.
SO I THINK THAT IS AN ASPECT OF
THINKING ABOUT
INTERSECTIONALITY, IS THINKING
ABOUT SAFETY.
>>SO THIS IS A REALLY TOUGH
QUESTION, AND WHAT I'M GOING TO
SAY IS, IF YOU WOULD PLEASE COME
TALK TO ME BETWEEN SESSIONS,
THERE WAS ACTUALLY A RECENT
PRESENTATION THAT ADDRESSED THIS
AT ANOTHER CONFERENCE, AND I'D
BE HAPPY TO FIGURE THAT OUT FOR
YOU AND GET YOU -- THE WOMAN
WAS, I BELIEVE, AT UCLA.
SO I CAN GET YOU HER CONTACT
INFORMATION.
UNFORTUNATELY, WHAT SHE SAID IN
ESSENCE IS, GREAT QUESTION,
TRYING TO FIGURE IT OUT, THANKS.
BUT SHE WAS VERY ARTICULATE AND
THOUGHTFUL, SO I'D BE HAPPY TO
LOOK THAT UP AND GET THAT TO
YOU.
I'M GOING TO GO TO THE BACK
THERE, BECAUSE YOU HAVE BEEN
WAITING AS WELL.
>>UIC.
UNAPOLOGETICALLY
THEY/THEIR/THEM.
WAIT A MINUTE TO THANK THE PANEL
FOR BEING HERE BECAUSE I THINK
FOR ME AND OTHERS IN THIS ROOM,
IT'S REALLY IMPORTANT TO HAVE
THIS PANEL AND HAVE THIS SPACE.
I WANT TO ACKNOWLEDGE THAT WE
HAVE BEEN DOING QUEER 101 FOR A
COUPLE OF DECADES IN THESE
CONFERENCES AND I THANK YOU ALL
FOR PUSHING THE NEEDLE ON THAT.
I WANTED TO HAVE A COMMENT MORE
THAN ANYTHING AND THAT IS JUST
TO REFLECT THAT I THINK IN
ADDITION TO ASKING PEOPLE TO
COLLECT THE DATA, THERE NEEDS TO
BE A MANDATE, AND THAT NEEDS TO
COME FROM OUR FUNDERS, THAT
NEEDS TO COME FROM OUR JOURNALS
AND OUR EDITORS.
THIS IS A CRITICAL PRIORITY FOR
ALL SCIENCE, NOT ONLY SCIENCE
THAT IS FOCUSED ON SEXUAL AND
GENDER MINORITIES.
AND WE HAVE EXISTING CRITERIA
THAT MANDATE SCIENTISTS REPORT
ON DEMOGRAPHIC CHARACTERISTICS,
SO WHAT IF WE WERE TO BEYOND THE
BINARY WHEN ASKING ABOUT
BIOLOGICAL SEX OR GENDER, WHAT
IF WE WERE TO JUST BE MORE
COMPREHENSIVE?
ISN'T THAT WHAT WE ALL WANT?
SO I WILL -- AND I'LL GIVE AN
EXAMPLE IN TERMS OF
INTERSECTIONALITY, FOR ALL
CANCER RESEARCH, SO I HAVE
PREVIOUSLY THROUGH
INTERSECTIONALITY WITH RACE AND
ETHNICITY, SOME OF THE WORK THAT
I'VE SHOWN IS THAT AFRICAN
AMERICAN SEXUAL MINORITY WOMEN
HAVE GREATER RISKS OF NEEDS,
HYPERTENSION, LESS ABLE TO DO
PHYSICAL ACTIVITY TO RECOMMENDED
GUIDELINES THAN THEIR WHITE
COUNTERPARTS.
THEY ARE ALSO SIMULTANEOUSLY
COMPARED TO AFRICAN AMERICAN
HETEROSEXUAL POPULATIONS MORE
LIKELY TO USE TOBACCO, MORE
LIKELY TO BE EXPOSED TO ALCOHOL
USE AND DO THAT.
SO WE HAVE A -- SITUATION HERE
AND HAVING SOGI DATA, HAVING
ACCESS TO THAT DATA, ACCESS TO
AGE, OTHER THINGS CRITICAL IN
OUR BASELINE MODEL KS REALLY
HELP US UNDERSTANDING WHERE THAT
VARIATION IS AND YE YET WE DON'O
IT.
ACTUALLY IT SHOULD BE A PART OF
EVERYONE'S TABLE 1, JUST IN
GENERAL.
THANK YOU.
>>I DON'T THINK ANYBODY ON THIS
PANEL IS GOING TO DISAGREE WITH
YOU.
THANK YOU FOR YOUR COMMENTS.
YES.
THAT'S WHAT I'LL SAY ABOUT THAT.
YES, WE HAVE SOMEBODY HERE AT
THE FRONT AND THEN I'M GOING TO
GO TO A COUPLE QUESTIONS HERE
FROM SLIDO AND MAYBE PUT A FEW
OF MY OWN QUESTIONS IN.
>>GOOD MORNING.
TERESA GILLESPIE FROM EMORY
UNIVERSITY.
FIRST THANK YOU ALL FOR THOSE
EXCEPTIONAL PRESENTATIONS.
I'M GLAD TO HEAR THAT THE
NATIONAL ACADEMIES ARE LOOKING
AT DATA COLLECTION, AND I THINK
WHEN WE THINK ABOUT HOW CHANGE
COMES, OFTEN REQUIREMENTS SORT
OF DRIVE THOSE CHANGES.
SO IF YOU LOOK AT THE NIH FORM
THAT IS USED FOR ENROLLMENT OF
HUMAN SUBJECTS FOR ANY GRANT
PROPOSAL, THEY ONLY OFFER TWO
OPTIONS, FEMALE AND MALE.
HOWEVER, FOR THE ACTUAL
ENROLLMENT, YOU GET TO HAVE
FEMALE, MALE, OR UNKNOWN OR
UNDOCUMENTED.
SO MY QUESTION IS WHETHER THERE
HAVE BEEN CONVERSATIONS AT THE
NIH THAT MAYBE -- BECAUSE WHEN
WE TRY TO IMPLEMENT THESE IN OUR
OWN CENTERS, THERE'S OFTEN
PUSHBACK THAT, LIKE, WELL, WHO
NEEDS TO KNOW THIS, BUT I THINK
IF THE NIH REQUIRED THAT, IT
WOULD REALLY FACILITATE THAT
DATA COLLECTION PROCESS.
SO I JUST WONDER IF THERE HAVE
BEEN CONVERSATIONS.
>>I AM A LOWLY EMPLOYEE HERE T
NCI AND CAN'T REALLY ANSWER THAT
QUESTION.
WHAT I CAN TELL YOU IS, I HEAR
THAT QUESTION ALL THE TIME.
I THINK THERE ARE A NUMBER OF
DATA POINTS THAT PEOPLE THINK
SHOULD BE REQUIRED, THIS BEING
ONE OF THEM.
THIS IS GOING TO SOUND LIKE AN
EXCUSE, BUT THE LEVEL OF
POLICYMAKING, THE AMOUNT OF
PERMISSIONS THAT WOULD HAVE TO
BE GOTTEN, THE AMOUNT OF MONEY
IT WOULD COST TO CHANGE ALL OF
OUR I.T. SYSTEMS, IT'S DAUNTING.
AND SO I THINK WITH TIME, MAYBE
THERE WILL BE A GROUNDSWELL OF
SUPPORT.
AND I DO THINK THESE
CONVERSATIONS ARE GOING ON, BUT
IT'S TOUGH, AND IT DOESN'T SEEM
LIKE A BIG DEAL BUT IT'S REALLY
A SUPER BIG DEAL FROM A SYSTEMS
AND AGENCY WHERE WE ARE SUBJECT
TO CONGRESSIONAL OVERSIGHT.
SO, YOU KNOW, I ENCOURAGE ALL OF
YOU TO TALK ABOUT THIS AS MUCH
AS YOU CAN.
BECAUSE I THINK IT IS GOING TO
NEED TO BE A GROUNDSWELL FROM
THE COMMUNITY.
I'M GOING TO TAKE THE LIBERTY OF
ASKING ONE QUESTION OF MEGAN
ACTUALLY, AND THEN WE'LL COME
BACK TO THE QUESTIONS THAT HAVE
COME IN.
SO MEGAN, YOU KNOW, I HEAR ALL
THE TIME WHEN I RECOMMEND PEOPLE
COLLECT SOGI DATA THAT WE CAN'T
COLLECT THOSE DATA BECAUSE
THEY'RE GOING TO OFFEND
SOMEBODY.
AND WE DON'T WANT TO OFFEND
ANYBODY.
SO CAN YOU COMMENT ON HOW MUCH
THAT IS A CONCERN?
>>YES.
SO I HEAR THAT ALL THE TIME.
AND FIRST I WOULD ENCOURAGE
PEOPLE TO THINK ABOUT HOW
OFFENDED THEY FEEL WHEN THEY
FILL OUT RACE AND ETHNICITY IN A
CLINICAL SPACE.
BECAUSE I THINK MANY OF THE SAME
ARGUMENTS WERE MADE THE SAME
WAY, LIKE, BACK AROUND 2008,
WHEN THERE WAS A PUSH TO COLLECT
MORE RACE AND ETHNICITY DIRECTLY
FROM PATIENTS.
SO THAT'S ONE.
TWO IS THAT THE LITERATURE DOES
NOT SHOW THAT PEOPLE ARE
UNCOMFORTABLE WITH THESE
QUESTIONS, OVERWHELMINGLY.
AND SAMPLE WITH A WIDE RANGE OF
AGES, VETERANS ACROSS THE BOARD
ARE GENERALLY BETTER FOR THOSE
THAN INCOME QUESTIONS.
SO PEOPLE ARE NOT OVERWHELMINGLY
OFFENDED.
GENERALLY WHAT I'VE HEARD IN MY
WORK IS THAT IT'S MOSTLY OLDER
PEOPLE WHO ARE LIKE, WHY ARE YOU
ASKING ME THIS?
I'M 80 YEARS OLD.
AND I THINK IF YOU HAVE A
RESPONSE, SOMETHING LIKE, YOU
KNOW, WE KNOW PEOPLE HAVE
DIFFERENT NEEDS IN THEIR CARE,
SOME PEOPLE AREN'T GETTING THE
CARE THAT THEY NEED, AND WE WANT
TO KEEP TRACK OF THAT, USUALLY
THAT'S ALL IT TAKES.
PEOPLE JUST DON'T UNDERSTAND
WHERE THIS QUESTION CAME FROM.
SO I THINK WAYS TO COMBAT THAT
ARE SITUATING THE QUESTIONS IN
DEMOGRAPHICS, AND NORMALIZING
IT.
IF WE ASK THIS MORE AND MORE,
IT'S GOING TO BECOME MORE
ROUTINE, AND IT IS REALLY A
DEMOGRAPHIC QUESTION.
>>OKAY.
I'M GOING TO TAKE ONE QUESTION
FROM THE CHAT HERE.
AND I THINK, ASH, I'M GULF COAST
TO SERVE THIS ONE TO YOU.
IS IT IMPORTANT FOR A PERSON'S
HEALTHCARE TO DISTINGUISH WHERE
A TRANS PERSON IS IN THEIR
TRANSITION?
>>SO I GUESS WHAT I WOULD SAY
TO THAT QUESTION IS, YOU KNOW,
DIFFERENT TRANS AND NON-BINARY
PEOPLE HAVE DIFFERENT MEDICAL
INTERVENTIONS TO CHANGE OUR
BODIES TO ALIGN BETTER WITH OUR
GENDER.
SOME OF US DON'T GO ON HORMONES
OR HAVE SURGERIES AND SOME OF US
DO.
SO JUST LIKE YOU WOULD WANT TO
KNOW THE MEDICATIONS FOR ANY
PATIENT AND THE SURGICAL AND
MEDICAL HISTORY FOR ANY PATIENT,
IT LIKELY ALSO IMPORTANT TO KNOW
THOSE THINGS FOR YOUR TRANS
PATIENTS AS WELL.
>>OKAY.
HERE IN THE ROOM, NAME AND WHERE
YOU'RE FROM, PLEASE.
>> -- FIRST OF ALL, I REALLY
WANT TO THANK YOU FROM THE
BOTTOM OF MY HEART FOR YOUR
COURAGE, YOUR SINCERITY, AND
WHAT IT TAKES TO DO THIS PANEL
AT THE LEVEL THAT YOU HAVE DONE
IT.
I REALLY AM DEEPLY GRATEFUL AND
IMPRESSED.
SECOND, AS I WAS LISTENING TO
ALL OF YOU HERE, ONE THING THAT
FELT -- CAME OUT VERY STRONG TO
ME, AND I'VE ALSO OBSERVED IN
OTHER TYPES OF MINORITIES,
ESPECIALLY IN WHAT YOU ARE
DESCRIBING AS THE LACK OF
SAFETY.
AND ONE OF THE THINGS THAT I
HAVE BEEN THINKING AND I WOULD
LIKE TO HEAR WHAT YOU THINK OF
THIS IS THAT, YOU KNOW, WE ARE
TALKING -- WE ARE HAVING THIS
CONVERSATION HERE WITHIN THE
CONTEXT OF -- DISPARITIES, BUT
REALLY WHEN I'M SPEAKING TO
PATIENTS, IT'S REALLY -- IT
SHOULD REALLY BE PART OF PATIENT
SAFETY.
WE LOOK AT SAFETY AS GUIDANCE,
YOU KNOW, TO PROTECT PATIENTS
FROM INFECTIONS, INJURIES AND
MEDICAL ERRORS, BUT MINORITY
PATIENTS OF ALL KINDS ARE NOT
SAFE IN HEALTHCARE, AND WHAT YOU
ARE DESCRIBING TODAY WAS
REALLY -- IT WAS STRIKING AT THE
VERY -- LEVEL AND YOU HAVE THE
CREDIBILITY OF BEING IN A
MINORITY GROUP THAT ALSO THE
CREDIBILITY OF BEING LEADERS IN
MEDICINE, AND YOU KNOW, THAT WAS
VERY POWERFUL.
AND WHAT DO YOU THINK AND WHAT
CAN WE DO TO RAISE EMOTIONAL
SAFETY OF PATIENTS AT THE LEVEL
OF PATIENT SAFETY TO ADDRESS
INEQUITIES IN HEALTHCARE?
>>MEGAN, SARAH, WOULD EITHER OF
YOU LIKE TO DO A RESPONSE TO
THAT ONE?
>>I WOULD SAY YES, ABSOLUTELY,
SAFETY IS PARAMOUNT, WHICH IS
WHY I THINK BEFORE ANYBODY
STARTS SOGI DATA COLLECTION,
THERE ARE THOSE KEY PIECES THAT
NEED TO HAPPEN.
AND THAT INCLUDES PATIENT
PROTECTIONS LIKE PATIENT BILLS
OF RIGHTS OR NON-DISCRIMINATION
POLICIES THAT EXPLICITLY INCLUDE
SEXUAL ORIENTATION AND GENDER
IDENTITY AS A START.
BUT I THINK THE LEADERSHIP
COMPONENT, I MENTIONED THAT
LEADERSHIP COMMITMENT IS
NECESSARY, AND THAT'S REALLY TO
SET A CULTURE FROM THE TOP-DOWN
OF HOW WE HANDLE THIS
INFORMATION AND HOW WE WANT TO
BEHAVE AND TREAT PATIENTS TH, TT
RESPECT ISNES NECESSARY AND WE L
DO OUR BEST WITH THAT, I THINK
THAT'S WHERE THE LEADERSHIP
PIECE COMES IN, AS WELL AS THE
TRAINING, MAYBE MA MAKING SURE E
HEAR THE INFORMATION
RESPECTFULLY AND DISCLOSE IN A
WAY THAT DOESN'T FURTHER
TRAUMATIZE PATIENTS.
>>THE ONLY OTHER THING I WOULD
ADD TO THAT FANTASTIC ANSWER IS
I THINK IT ALSO HAS TO INVOLVE
ABSOLUTELY EVERYBODY.
SO IT CAN'T JUST BE THE
CLINICIAN, IT NEEDS TO BE THE
FRONT DESK PERSON WHO ISN'T
GOING TO PUSH BACK WHEN NAMES ON
INSURANCE DOESN'T MATCH THE NAME
THAT GIVEN AND USES THE CORRECT
PRONOUNCE AND THAT YOUR CLINIC
HAS GENDER NEUTRAL BATHROOMS.
I THINK WE JUST NEED TO THINK
ABOUT IT, EVERYBODY IN THE CARE
TEAM, EVERYBODY ALSO ON THE
RESEARCH TEAM, THAT WE SPEAK
RESPECTFULLY ABOUT PEOPLE WHEN
WE WRITE ABOUT THEM AND WHEN WE
RESEARCH THEM AS WELL.
>>I'M JUST GOING TO ADD A
COUPLE RESOURCES.
IF YOU GO TO THE FENWAY
INSTITUTE, THEY HAVE RESOURCES
ABOUT TRAINING AND ENVIRONMENTAL
THINGS.
ALSO THE HUMAN RIGHTS CAMPAIGN
HAS A HEALTH AND AGING PROGRAM
THAT ACTUALLY INVITES HOSPITALS
PRIMARILY, BUT INCREASINGLY
LONG-TERM CARE FACILITIES, TO
KIND OF QUALIFY AND BECOME
DESIGNATED LEADERS IN LGBTQ
CARE, AND IT'S INTERESTING, AN
INCREASING NUMBER OF FACILITIES
DO THAT BECAUSE THEY GET A
LITTLE LOGO THEY CAN USE.
AND IT BECOMES A MARKETING
ISSUE, AND I HATE TO SAY THAT --
I MEAN, I'M ACTUALLY HAPPY TO
SAY THAT OUR COMMUNITY IS WORTH
MARKETING TO, BUT SOME OF THIS
IS JUST REALISTICALLY DRIVEN BY
MONEY.
I THINK A LOT OF WHAT WE TALKED
ABOUT YESTERDAY, THERE'S ALWAYS
THAT MONEY ELEMENT THERE, POWER
ELEMENT.
ANY OTHER QUESTIONS IN THE ROOM?
I'M GOING TO REVERT TO MY
QUESTIONS HERE AND I'M GOING TO
ASK ASH A QUESTION -- OH, WE
HAVE SOMEBODY COMING UP.
OH, WE HAVE TWO SOMEBODIES.
GO AHEAD.
I THINK THE GENTLEMAN IN THE
BACK BEAT YOU THERE.
>>HI.
KAREEM WATSON, NIH ALL-OF-US
RESEARCH PROGRAM.
I HAD A QUICK QUESTION ABOUT
THE -- I LOVE THE CONVERSATION
THAT WE'RE HAVING.
I WONDER HOW ARE WE UTILIZING
AND LEVERAGING THE LEADERSHIP OF
OUR CANCER CENTERS AS WELL AS
NIH?
I LOVE WHAT WE'RE SEEING WITH
COEs, SECTIONS, AND THEN ALSO
THE FACT THAT WE NOW HAVE
EQUITY, DIVERSITY AND INCLUSION
PRIORITIES WITHIN CANCER
CENTERS, AND I WOULD LOVE TO
HEAR IF ANY OF YOU ALL HAVE
LEVERAGED THAT SENIOR LEADERSHIP
TO PROMOTE SOME OF THOSE
PRIORITIES.
I KNOW I WAS FORTUNATE WHEN I
WAS IN THE CANCER CENTER AT USC
WE HAD SOME PILOT FUNDING TO DO
SOME INITIAL FUNDING, SO HAVING
THIS FROM SENIOR LEADERSHIP CAN
BE IMPORTANT, CURIOUS IF YOU
HAVE LEVERAGE WITH THE COE OR --
>>ABSOLUTELY.
SO I THINK WE'RE IN A REALLY
EXCITING TIME RIGHT NOW.
MY COLLEAGUE AT THE NATIONAL
LGBT CANCER NETWORK MENTIONED
THAT I BELIEVE 30% OF
COMPREHENSIVE CANCER CENTERS ARE
NOW ACTIVELY WORKING ON SOGI
IMPLEMENTATION.
I KNOW THE FOUR COMPREHENSIVE
CANCER CENTERS IN TEXAS ARE ALL
WORKING ON IT.
TWO OF US ARE DOING IT WITH OUR
OWN INTERNAL FUNDS.
BECAUSE WE DID GO TO CANCER
CENTER LEADERSHIP AND SAY THIS
IS WHERE THE FUTURE IS HEADED.
WE HAVE THESE PEOPLE IN OUR
CATCHMENT AREA AND WE NEED TO
DOCUMENT HOW WE'RE SERVING THEM
OR NOT, SO THAT HAS BEEN A VERY
SUCCESSFUL APPROACH AT MY OWN
INSTITUTION.
>>I WANT TO PUT A PLUG IN FOR
PRIDENET.
>>I WAS GOING TO SAY, IF YOU
DON'T DO A PLUG FOR ALL-OF-US
AND THE EFFORTS YOU'VE MADE, I'M
GOING TO DO ONE FOR YOU.
>>YEAH, NO, I'VE BEEN THANKFUL
WHAT WE'VE BEEN ABLE TO DO.
WE'VE BEEN ABLE TO PARTNER WITH
MITCH LINE AND PRIDENET AT
STANFORD UNIVERSITY, TO COLLECT
SOME OF THE MOST AMAZING --
10% -- LOOKING AT THAT
INTERSECTIONALITY DATA, WHAT
WE'RE SEEING RIGHT NOW IS
LOOKING AT POPULATION BUT OUR
ESTIMATE POPULATION -- OVER THE
MISSING MARK, SO AGAIN I LOVE
THAT QUESTION -- ABOUT
INTERSECTIONALITY BECAUSE WHAT
WE'RE MISSING OUT ON IS BOTH
LOWER SES POPULATIONS, RACIAL
ETHNIC MINORITIES AND SEXUAL AND
GENDER MINORITIES.
WE'RE DOING A GOOD JOB OF
GETTING SGM IN SO KUDOS TO US
FOR THAT BUT WE'VE GOT TO DO
MORE ON INTERSECTIONALITIES.
>>I'LL ALSO GOING TO THANK YOU
FOR INCLUDING SEXUAL AND GENDER
MINORITY EXPLICITLY IN
DISPARITIES OPPORTUNITIES FOR
WORKFORCE DEVELOPMENT.
THIS IS AN AREA THAT HAS BEEN
REALLY LACKING THAT I WAS
REALLY, REALLY PLEASED TO SEE
THAT YOU HAD EMPHASIZED THAT.
I'M GOING TO GIVE A LITTLE NCI
PLUG HERE, SELFISHLY.
SOME OF THE WORK MEGAN IS
REFERRING TO, SHE SAID INTERNAL
FUNDS.
NCI, A COUPLE MONTHS AGO, I
THINK, FUNDED 12 OR 14 CANCER
CENTERS TO HELP SUPPORT THEIR
EFFORTS TO EITHER INITIATE OR
ENHANCE SOGI DATA COLLECTION.
NCI IS NOW SIGNED ON TO SEVERAL
NOSIs TO INDICATE OUR INTEREST
IN THIS AREA OF RESEARCH, AND WE
HAVE AN ADMINISTRATIVE
SUPPLEMENT CALLOUT WITH
APPLICATIONS DUAL LATER THIS
MONTH.
SO THERE IS ACTIVE INTEREST HERE
IN PROMOTING THIS AREA OF
RESEARCH.
SO PERSON IN THE FRONT HERE.
>>HI.
MY NAME IS -- I'M A PRIMARY CARE
PHYSICIAN, REALLY GREAT SESSION.
THANK YOU SO MUCH.
ONE OF THE QUESTIONS I HAD WHICH
MIGHT BE SLIGHTLY -- IS, ONE OF
THE KEY THINGS THAT WE SEE IS
OBVIOUSLY BEING REPRESENTATIVE
AS HEALTHCARE PROFESSIONALS IN
THE COMMUNITY WE SERVE.
AND ONE OF THE THINGS THAT
REALLY STRUCK ME ABOUT YOUR
PRESENTATION WAS AROUND VIOLENCE
FOR PATIENTS WITHIN THESE
COMMUNITIES IN THE HEALTHCARE
SETTING.
I WAS REALLY CURIOUS IF THERE'S
ANY KIND OF UNDERSTANDING OF HOW
HEALTHCARE PROFESSIONALS FROM
THESE COMMUNITIES FEEL AND HOW
THEY ARE BEING TREATED TO, FOR
INSTANCE, ARE THEY SAFE IN A
SAFE ENVIRONMENT TO THEN CARE
FOR PATIENTS TO MAKE THEM FEEL
SAFE IN THIS ENVIRONMENT.
AND I WAS REALLY CURIOUS ABOUT
IF THERE IS ANY DATA FROM THAT,
AND WHAT MORE WE CAN DO AS
HEALTHCARE PROFESSIONALS TO
CREATE MORE INCLUSIVE SETTING
FOR THESE HEALTHCARE
PROFESSIONALS AS WELL.
>>THE ONLY DATA I KNOW ABOUT
ARE PRETTY OLD, AND I MEAN, ARE
KIND OF LIKE WHAT YOU WOULD
EXPECT THE LGBT PHYSICIANS AND
OTHER MEDICAL TRAINEES
EXPERIENCE STIGMA
DISCRIMINATION.
AND I KNOW FROM TALKING TO MANY
TRANSGENDER MEDICAL TRAINEES, IT
CAN BE VERY DIFFICULT TO DECIDE
WHETHER TO BE OUT AND IN
INTERVIEWS, APPLICATIONS OR
OTHER SETTINGS, AND THEN DEALING
WITH NAME CHANGES AND PRONOUNS
IN CLINICAL SETTINGS, I THINK
CAN BE VERY CHALLENGING.
SO THERE IS A GROUP OF TRANS
TRAINEES THAT WE'VE CREATED, SO
IF ANYONE IS INTERESTED IN THAT,
THEY CAN EMAIL ME ABOUT IT.
BUT I DO THINK IT AN IMPORTANT
AREA TO KEEP THINKING ABOUT,
DOING MORE RESEARCH AND WORK,
BECAUSE I THINK THAT, YOU KNOW,
I CAN JUST SAY FOR MYSELF THAT
IT'S VERY STRESSFUL TO BE LIKE
MISGENDERED OVER AND OVER AGAIN
IN A VARIETY OF SETTINGS AND
CLINICAL SETTINGS AND IT CAN BE
VERY DISTRACTING INTER FROM DOIG
WORK.
SO I REALLY APPRECIATE YOUR
QUESTION AND YOUR CONCERN.
>>AND I WILL SAY THAT NIH
SPONSORED A GENDER-AFFIRMING
CARE WORKSHOP LAST WEEK, I
BELIEVE MONDAY AND TUESDAY, AND
I HAD THE PRIVILEGE OF BEING
PART OF THOSE DISCUSSIONS.
AND UNFORTUNATELY, A MAJOR PART
OF THE DISCUSSION WAS WHETHER WE
COULD MAKE THIS PUBLIC OR NOT.
BECAUSE OF THE RISK THAT
QUESTIONS WOULD BE ASKED OR
COMMENTS WOULD BE MADE THAT WERE
HOSTILE, AND FRANKLY, THAT THE
PRESENTERS MIGHT FACE HOSTILITY
UP TO AND INCLUDING PHYSICAL
HARM WHEN RETURNING -- WE
WEREN'T IN PERSON, BUT AT THEIR
INSTITUTIONS.
SO I THINK THIS IS A GREAT
QUESTION, AND IT'S VERY REAL
RIGHT NOW, AND PEOPLE'S CAREER
AND WELL-BEING ARE BOTH BEING
THREATENED BY SOME OF THE THINGS
THAT ARE GOING ON.
SO I'M GOING TO HOPE THE PERSON
IN THE BACK HAS A MORE UPLIFTING
QUESTION THAT WE CAN WRAP UP ON?
IF NOT, I'LL MAKE SOMETHING UP.
[LAUGHTER]
>>I DO.
ZUL SARANI FROM CEDARS-SINAI
CANCER IN LOS ANGELES.
LOS ANGELES HAS THE SECOND
LARGEST POSSIBLY THE MOST
DIVERSE LGBTQ+ POPULATION IN THE
COUNTRY.
AND YOU KNOW, JUST BUILDING UPON
WHAT THE PERSON THAT TALKED
EARLIER SAID THAT, YOU KNOW, WE
ACTUALLY LEVERAGED OUR COMMUNITY
OUTREACH AND ENGAGEMENT TO
REALLY, YOU KNOW, CREATE CHANGE
IN OUR INSTITUTION AND REALLY
CATALYZE RESEARCH.
SO WE BUILT A TRANSGENDER
RESEARCH ADVISORY COMMITTEE, WE
BROUGHT IN LGBTQ COMMUNITY
MEMBERS TO TALK TO OUR
RESEARCHERS AND YOU KNOW, A LOT
HAS COME OUT OF IT, A CAMPAIGN
ON HOW TO IMPROVE HPV
VACCINATIONS, THINKING ABOUT A
DIFFERENT APPROACH TO TALKING
ABOUT CANCER SCREENING, A GENDER
NEUTRAL APPROACH.
WE DEVELOPED A SURVEY WHERE WE
COLLECTED -- 700 SURVEYS THAT WE
RECENTLY COMPLETED AND WANT TO
CONTINUE COMPLETING IT THIS YEAR
AS WELL, AND MANY OTHER RESEARCH
STUDIES THAT HAVE EMERGED
BECAUSE OF THAT.
SO I GUESS THIS IS UP TO YOU
FOLKS IN CANCER CENTERS TO
MEREREALLY BUILD YOUR COMMUNITY
MOVEMENT TO CREATE THIS CHANGE.
SO THANK YOU.
AND THANK YOU SO MUCH TO THE
PANEL.
EXCELLENT.
>>YOU'RE VERY WELCOME.
EVERYTHING YOU HEARD YESTERDAY
AND MAY HEAR TODAY ABOUT
ENGAGING WITH COMMUNITIES WHEN
YOU DO RESEARCH, PLEASE, HERE IN
MY WORLD, WE HAVE A SAYING WHICH
IS NOTHING ABOUT US WITHOUT US.
AND SO I THINK THAT'S WHERE I'LL
LEAVE IT TODAY.
AND WE APPRECIATE VERY MUCH ALL
OF YOUR KIND WORDS AND
THOUGHTFUL QUESTIONS.
SO STEFFAN, I'M GOING TO TURN IT
BACK TO YOU.
I THINK IT'S BREAK TIME.
[APPLAUSE]
>>IT'S BREAK TIME.
I WANT TO SAY SOMETHING ABOUT
POSPOSTER PRESENTERS.
PLEASE PUT UP YOUR POSTERS ON
THE BREAK.
WE'RE ACTUALLY ON TIME.
IT'S GOOD, IT'S GOOD.
IT WAS GOOD YESTERDAY.
NO CRITICISM.
AND I ALSO WOULD LIKE TO THANK
EVERYBODY THIS MORNING FOR THESE
GREAT PRESENTATIONS AND WE HAD A
GREAT START.
THANK YOU SO MUCH.
MY NAME IS ALEXANDRIA HARRIS,
ALSO THE DIVISION OF CANCER
EPIDEMIOLOGY AND GENETICS.
TODAY IT'S MY IMMENSE HONOR TO
CHAIR THIS FIRST DEDICATED
SESSION ON CANCER DISPARITY
RESEARCH IN THE NCI INTRAMURAL
PROGRAM.
AS YOU'LL HEAR TODAY, THERE'S
MANY EXCITING EFFORTS UNDER WAY
WITHIN THE IRP WHICH SPAN ACROSS
DISCIPLINES AND DIVISIONS, MANY
OF WHICH ARE TRAINEE-LED.
IN FACT, ALL THEE SPE ALL THREEE
CURRENT CANCER PREVENTION
FELLOWS AND I THINK THIS
SHOWCASES THE PASSION AND
COMMITMENT OF THE NEXT
GENERATION OF SCIENTISTS IN
MOVING THE FIELD FORWARD.
SO WITH THAT, I'D LIKE TO
INTRODUCE THE FIRST SPEAKER, DR.
DR. LORD IS A CANCER PREVENTION
FELLOW IN BOTH THE CENTER FOR
CANCER RESEARCH AND THE DIVISION
OF CANCER EPIDEMIOLOGY AND
GENETICS.
PLEASE HELP ME IN WELCOMING
DR. LORD.
[APPLAUSE]
>>THANK YOU SO MUCH,
DR. HARRIS.
I'M VERY EXCITED TO BE ABLE TO
PRESENT SOME OF MY WORK HERE
TODAY.
SO I'M GOING TO TALK ABOUT BOTH
SOCIAL AND ENVIRONMENTAL FACTORS
INCLUDING NEIGHBORHOOD LEVEL
FACTORS THAT IMPACT TUMOR
BIOLOGY AND MORE SPECIFICALLY
DNA METHYLATION AND HOW THAT
IMPACTS BREAST CANCER
DISPARITIES.
I HAVE NO FINANCIAL DISCLOSURES.
SO I WANT TO START MY TALK TODAY
WITH THIS DIAGRAM THAT SHOWS
SOME OF THE SYSTEMIC AS WELL AS
INDIVIDUAL LEVEL DRIVERS THAT
ARE CONTRIBUTING TO THE RACIAL
AND ETHNIC DISPARITIES WE SEE IN
CERTAIN POPULATION GROUPS.
OF COURSE THIS IS NOT AN
EXHAUSTIVE LIST OF RISK FACTORS
BY ANY MEANS BUT IT INCLUDES
VERY IMPORTANT ETIOLOGIC
CONTRIBUTORS TO THE WORST
OUTCOMES WE SEE FOR BLACK MEN
AND WOMEN IN THE UNITED STATES
WITH CANCER, AS WELL AS THE MORE
AGGRESSIVE TUMOR BIOLOGY THAT
THESE POPULATIONS EXPERIENCE.
SO ON A SYSTEMIC LEVEL, WE SEE
DIFFERENCES IN ACCESS TO
HEALTHCARE, ACCESS TO HEALTHY
FOODS AS WELL AS GREEN SPACE FOR
PHYSICAL ACTIVITY, THESE HAVE
ALL BEEN SHOWN TO IMPACT CANCER
DISPARITIES AS WELL AS
NEIGHBORHOOD AND ENVIRONMENTAL
LEVEL FACTORS, INCLUDING AIR AND
GROUND POLLUTION, AS WELL AS
EXPOSURE TO CANCER-CAUSING
CHEMICALS, WHETHER
OCCUPATIONALLY OR IN THE
HOUSEHOLD.
THESE GROUPS ALSO EXPERIENCE
DIFFERENCES IN RESOURCES AND
OPPORTUNITIES, AND RESEARCH HAS
SHOWN THAT INCOME IS A HUGE
DRIVER OF CANCER RISK AND CANCER
DISPARITIES IN THIS COUNTRY, AND
A LACK OF INCOME CAN IMPACT --
LACK OF INCOME AND/OR HEALTH
INSURANCE CAN IMPACT ACCESS TO
CANCER TREATMENT AS WELL AS
CANCER SURVIVAL AND OUTCOMES.
ON AN INDIVIDUAL LEVEL FACTOR,
WE CAN SEE THAT OUR GENETICS AS
WELL AS OUR INDIVIDUAL GENETIC
PROFILES CAN CONTRIBUTE TO
CANCER DISPARITIES IN RACIAL
POPULATIONS, ESPECIALLY WHEN
THESE VARIANTS OR THESE
MUTATIONS ARE
POPULATION-SPECIFIC.
ADDITIONALLY, WE SEE THAT
INDIVIDUAL-LEVEL BEHAVIORS LIKE
DIETARY CHOICES, SMOKING TOBACCO
OR DRINKING ALCOHOL, ARE ALSO
ALL IMPORTANT CONTRIBUTORS.
AND THEN FINALLY, INDIVIDUAL
LEVEL SOCIAL EXPERIENCES
INCLUDING SOCIAL ISOLATION OR
EXPERIENCES OF RACISM OR
DISCRIMINATION IN THESE GROUPS
CAN ALSO IMPACT OUTCOMES.
SO FOR MY TALK, I'LL FOCUS FIRST
ON GENETIC FACTORS AND HOW THEY
CONTRIBUTE TO CANCER
DISPARITIES, WHICH WE HEARD A
BIT ABOUT IN THE LATTER SESSIONS
YESTERDAY.
I'LL ALSO DISCUSS
NEIGHBORHOOD-LEVEL ENVIRONMENTAL
AND SOCIAL CONTRIBUTORS TO
DIFFERENCES IN TUMOR BIOLOGY,
SPECIFICALLY FOR BLACK
POPULATIONS.
IN THINKING ABOUT THE USE OF
GENETIC ANCESTRY VERSUS
SELF-REPORTED RACE, IT'S
IMPORTANT TO GET SOME CONTEXT AS
TO WHY THIS DISTINCTION IS
IMPORTANT.
SO AS WE'VE HEARD, OVERALL
CANCER STUDIES HAVE BEEN
HISTORICALLY AND LARGELY EURO
CENTRIC.
WE HEARD IN THE OPENING SESSION
YESTERDAY ABOUT THE LACK OF
DIVERSITY IN CLINICAL CANCER
TRIALS, WHICH HAS BEEN FAIRLY
SLOW TO IMPROVE, BUT I ALSO
WANTED TO POINT OUT THAT THERE
IS A SEVERE LACK OF DIVERSITY IN
GENOME-WIDE ASSOCIATION STUDIES,
WHICH ARE REALLY IMPORTANT IN
IDENTIFYING IMPORTANT DISEASE
LOCI THAT ARE ASSOCIATED WITH
RISK.
IT BEEN WELL DOCUMENTED THAT THE
LIMITED RISK ALLELES THAT HAVE
BEEN IDENTIFIED IN EUROPEAN
POPULATIONS DO NOT TRANSLATE
WELL TO NON-WHITE OR ADMIXED
POPULATIONS.
SO AS YOU MAY IMAGINE, A FAILURE
TO APPLY GWAS FINDINGS OUTSIDE
OF EUROPEAN POPULATIONS
INCREASES THE DIFFICULTY OF US
TO CREATE ACCURATE POLYGENIC
RISK SCORE MODELS, SPECIFICALLY
FOR ADMIXED POPULATIONS, WHICH
WILL REDUCE THE CLINICAL UTILITY
OF PRS MODELS IN THE CLINIC.
SO IF THESE STUDIES ARE NOW
BEING DONE IN GREAT ENOUGH
NUMBERS IN THESE NON-WHITE POP
POPULATIONS THEN THESE
INDIVIDUALS WILL ALWAYS
EXPERIENCE THESE BARRIERS IN
UNDERSTANDING THEIR GENETIC
CONTRIBUTORS ESPECIALLY WHEN
THESE ARE ANCESTRALLY
INFORMATIVE.
SO THE SECOND PART IS KIND OF
THINKING ABOUT THE USE OF
SELF-REPORTED RACE VERSUS
GENETIC ANCESTRY IN CANCER
DISPARITIES AND IT TOUCHES MORE
ON WHAT WE HEARD YESTERDAY,
WHERE ANCESTRY-ASSOCIATED GENE
SIGNATURES ARE TRANSLATING TO
DIFFERENTIAL TUMOR BIOLOGY IN
CERTAIN POPULATIONS.
SO WHEN WE ARE ABLE TO USE
QUANTIFIED GENETIC ANCESTRY
ESTIMATES OVER SELF-REPORTED
RACE, WE HAVE A BETTER
UNDERSTANDING OF THE GENETIC
DIFFERENCES THAT WILL CONTRIBUTE
TO BETTER GENE EXPRESSION
PREDICTION MODELS AS WELL AS
IMPROVED MAPPING OF FUNCTIONAL
ALEGALS THAALLELES THAT MAY CONO
DISEASE RISK.
SO WE DID SEE THIS FIGURE
BRIEFLY YESTERDAY, BUT I WANTED
TO DIVE IN A BIT MORE JUST
BECAUSE THE MESSAGE IS REALLY
IMPORTANT HERE.
I WAS ACTUALLY TALKING TO MAYAS
ROBSON YESTERDAY, IT ILLUSTRATES
OUR WORK IN BETTER UNDERSTANDING
HOW BOTH BIOLOGICAL DETERMINANTS
OF HEALTH AS WELL AS THE SOCIAL
DETERMINANTS OF HEALTH THAT
IMPACT CANCER DISPARITIES CAN
AND SHOULD BE DONE IN PARALLEL.
SO ON THE BIOLOGICAL SIDE, THIS
INCLUDES EMPLOYING DIVERSITY
COMPETENT RESEARCH SUCH AS
QUANTIFIED GENETIC ANCESTRY,
INCLUDING MORE MINORITIZED
POPULATIONS IN YOUR STUDIES, AS
WELL AS DIVERSIFYING GENOME-WIDE
ASSOCIATION STUDIES TO
MULTIETHNIC POPULATIONS.
AND THEN ON THE SOCIAL SIDE,
RECOGNIZING THAT STRUCTURAL
RACISM IS AN IMPORTANT RISK
FACTOR FOR ILLNESS IN GENERAL,
AND PUTTING MORE FUNDING TOWARDS
UNDERSTANDING THE WAYS WE CAN
MEASURE AND MITIGATE THE IMPACTS
OF DISPARITIES.
SO ALL OF THIS WILL LEAD TO MORE
DIVERSITY-COMPETENT RESEARCH AND
HOPEFULLY OVERALL WILL LEAD TO
HEALTH JUSTICE FOR EVERYONE.
QAWND FIED GENETIC ANCESTRY HAS
EXPANDED OUR KNOWLEDGE OF CANCER
BEYOND SELF-REPORTED RACE BUT
IT'S VERY IMPORTANT THAT WE
STUDY QUANTIFIED GENETIC
ANCESTRY IN THE CONTEXT OF
SOCIAL DETERMINANTS.
NEXT I WANT TO GO INTO THINKING
ABOUT HOW SOCIAL AND
ENVIRONMENTAL FACTORS CAN IMPACT
CANCER BIOLOGY FOR BLACK
AMERICANS.
THIS IS A REVIEW DONE WITH
DR. HARRIS AND DR. ANN SITTING
UP HERE AND IN OUR REVIEW, WE
HAD SPECIFIC STUDIES THAT HAVE
CAPTURED THE BIOLOGICAL EFFECTS
OF BOTH ENVIRONMENTAL AND SOCIAL
CONTRIBUTORS TO ADVERSE CANCER
OUTCOMES FOR BLACK MEN AND
WOMEN.
SO TWO MAJOR CONTRIBUTING
ENVIRONMENTAL FACTORS THAT HAVE
AN IMPACT ON HEALTH AND
SPECIFICALLY CANCER BIOLOGY ARE
AIR POLLUTION AS WELL AS
NEIGHBORHOOD DEPRIVATION.
SO IN ADDITION TO DISCUSSING THE
IMPACT OF ENVIRONMENTAL RACISM
ON HEALTH, WE DISCUSSED THE
EFFECTS OF AIR POLLUTION WHICH
DISPROPORTIONATELY IMPACTS
COMMUNITIES OF COLOR IN THE
UNITED STATES.
SO BIOLOGICALLY AIR POLLUTION
ENCOURAGES THE FORMATION OF DNA
ADDUCTS, WHICH ARE A FORM OF DNA
DAMAGE THAT CAN LEAD TO
MUTATIONS AS WELL AS THE
INITIATION OF CANCER.
AIR POLLUTION CAN ALSO
CONTRIBUTE TO THE EPIGENETIC
SILENCING OF TP53, WHICH IS A
TUMOR SUPPRESSOR GENE, AND CAN
ALSO HAVE IMPLICATIONS IN LOW
GRADE INFORMATION AND O OXIDATIE
STRESS.
THEN ADDITIONALLY, LIVING IN AN
ECONOMICALLY DISADVANTAGED
NEIGHBORHOOD CAN LEAD TO
ACCELERATED AGING VIA ATTRITION
OR SHORTENING OF TELOMERES.
THERE'S BEEN A GOOD AMOUNT OF
WORK DONE IN THAT AREA.
AS WELL AS INCREASED ALLOSTATIC
LOAD, WHICH YOU HEARD A BIT
ABOUT YESTERDAY, AS WELL AS
CHRONIC INFLAMMATION.
FOR SOCIAL CONTRIBUTORS, WE
INVESTIGATED SOCIAL ISOLATION AS
A RISK FACTOR FOR CANCER.
THIS INCLUDES BIOLOGICALLY
ELEVATED STRESS INDUCED
HORMONES, DECREASED OXYTOCIN
WHICH IS YOUR LOVE HORMONE, AND
THEN ACCELERATED EPIGENETIC
AGING, THEN SIMILARLY, WHEN
THINKING ABOUT HOW RACISM AND
DISCRIMINATION IS IMPACTING
TUMOR BIOLOGY, WE SEE THE SAME
KIND OF BIOLOGICAL EFFECT, SO
AIN CREAANINCREASE IN STRESS AND
DEPRESSION AS WELL AS
ACCELERATED AGING.
SO TAKEN TOGETHER, THESE FACTORS
ALL LEAD TO DISPARATE OUTCOMES
FOR THE INDIVIDUALS WHO
EXPERIENCE THESE RISK FACTORS
MORE FREQUENTLY.
THIS INCLUDES INCREASED CANCER
RISK, MORE AGGRESSIVE TEU NOR TR
SUBTYPES AS WELL AS A DECREASE
IN SURVIVAL.
SO FROM THIS REVIEW, WE SAW THAT
SOCIAL AND ENVIRONMENTAL FACTORS
CAN DRIVE DIFFERENCES IN TUMOR
BIOLOGY AS WELL AS OUTCOMES
BETWEEN DIFFERENT POPULATION
GROUPS.
BUILDING ON THAT IDEA, I WANT TO
NEXT DISCUSS OUR STUDY ON HOW
NEIGHBORHOOD DEPRIVATION IMPACTS
DNA METHYLATION AS WELL AS GENE
EXPRESSION.
AS WE HAVEN'T HAD ANY TALKS YET
ON DNA METHYLATION, I THOUGHT I
WOULD START WITH JUST A BIT OF A
PRIMER.
DNA METHYLATION IS THE
BIOLOGICAL PROCESS OF ADDING A
METHYL GROUP TO A DNA MOLECULE.
IT'S BEEN MOST STUDIED IN THE
REGULATION OF GENE EXPRESSION
BUT IT ALSO HAS IMPLICATIONS IN
HUMAN DEVELOPMENT, AS WELL AS
DIFFERENT DISEASE PROCESSES
INCLUDING CANCER.
SO THIS IS A SCHEMATIC OF A GENE
SHOWING THE DIFFERENT REGIONS
WHERE MYTH LAI METHYLATION CAN .
THE EFFECTS OF METHYLATION ON
GENE EXPRESSION ARE
LOCATION-DEPENDENT.
SO GENERALLY METHYLATION IS
STUDIED IN THE CONTEXT OF THE
PROMOTER REGION OR THE
TRANSCRIPTION START SITE.
AND METHYLATION IN THIS AREA
ACTUALLY LEADS TO GENETIC
SILENCING OR DECREASE IN
TRANSCRIPTION.
INTERESTINGLY ENOUGH IN THE GENE
BODY REGION LESS STUDIED IN THE
CONTEXT OF METHYLATION AND
INCLUDES OUR INTRONS AND OUR
EXONS, METHYLATION IS ACTUALLY
STRONGLY CORRELATED WITH GENE
EXPRESSION AND GENE' LON
GAITION.
GENE ELONGATION.
IN CANCER THE GENE BODY REGIONS
HAVE BEEN SHOWN TO LOSE DNA
METHYLATION AND THAT LEADS TO
DECREASED GENE EXPRESSION
COMPARED TO WHAT WE SEE IN
NON-CANCER CELLS.
AND I REALLY LOVE THIS SCHEMATIC
FROM THE EPA FROM 2015.
I THINK IT DOES A GREAT JOB
DESCRIBING HOW DNA METHYLATION
PROFILES CAN DIFFER BY
NEIGHBORHOOD DEPRIVATION.
SO WE CONSIDER THAT INDIVIDUALS
FROM DISADVANTAGED NEIGHBORHOODS
ARE EXPERIENCING A
DISPROPORTIONATE AMOUNT OF
CHEMICAL STRESSORS AS WELL AS
NON-CHEMICAL STRESSORS, WHICH
WILL HAVE IMPLICATIONS IN THE
GENOME.
AND STUDIES HAVE SHOWN THAT
THESE INCLUDE EPIGENETIC
ALTERATIONS INCLUDING HISTONE
MOD NATIONS, CHANGES TO ABERRANT
DNA METHYLATION, AS WELL AS
SHORT NON-CODING RNAs.
OVER TIME, THESE CHANGES WILL
EVENTUALLY LEAD TO DIFFERENTIAL
EPIGENETIC PROFILES BETWEEN
INDIVIDUALS FROM ADVANTAGED
VERSUS DISADVANTAGED
NEIGHBORHOODS AND CAN HAVE
IMPLICATIONS, LONG STANDING
IMPLICATIONS IN CANCER RISK AND
PROGRESSION, AND THIS CAN EVEN
SPAN ACROSS DIFFERENT
GENERATIONS.
WE WANTED TO INVESTIGATE THIS
CONCEPT FURTHER AND OUR STUDY
GOAL WAS TO INVESTIGATE IF DNA
METHYLATION IS LINKED TO
NEIGHBORHOOD SOCIOECONOMIC
DEPRIVATION, AND TO A DNA
PROFILE THAT'S MORE ASSOCIATED
WITH CANCER AND/OR IMMUNE-ROW
LATED PATHWAY
IMMUNE-RELATED PATHWAYS.
WE'RE USING TISSUE FROM THE NCI
MAYOR LEFT-HAND BREAST CANCER
COHORT.
THIS IS A LONG-STANDING
COLLABORATION BETWEEN NCI AND
THE UNIVERSITY OF MARYLAND.
THE WOMEN IN THE STUDY COMPLETED
A QUESTIONNAIRE AND THEY ALSO
DONATED THEIR -- EITHER THEIR
TUMOR TISSUE OR -- NORMAL TISSUE
FROM REDUCTION MAMMOMRS. TEES.
WE HAD 289 WOMEN IN THE STUDY,
MAJORITY OF WHICH ARE BLACK
WOMEN.
WE EXTRACTED DNA FROM TISSUES
AND USED THE EPIC 850K
METHYLATION ARRAY TO COLLECT OUR
METHYLATION DATA.
I JUST WANTED TO TALK A LITTLE
BIT MORE ABOUT OUR EXPOSURE
HERE, WHICH IS NEIGHBORHOOD
DEPRIVATION.
SO IN ORDER IN OUR COHORT TO
MEASURE SOCIOECONOMIC
DEPRIVATION, WE USED THE
NEIGHBORHOOD DEPRIVATION INDEX.
OURS WAS ADAPTED FROM THE NDI IN
2006.
FOR THIS INDEX, WE COLLECTED
CENSUS TRACT LEVEL DATA FROM THE
2000 CENSUS USING THE ADDRESSES
OF OUR PARTICIPANTS.
THIS IS AN EXAMPLE OF A CENSUS
TRACT MAP FOR MARYLAND, WHERE WE
CAN SEE THAT ESPECIALLY IN THE
BALTIMORE AREA, THERE'S A HIGHER
PERCENT POVERTY COMPARED TO THE
REST OF THE STATE AND THAT'S
WHERE A NUMBER OF OUR
PARTICIPANTS LIVE.
SO A BIT MORE INFORMATION ABOUT
THE NDI.
WE STARTED WITH 20 DIFFERENT
CENSUS TRACT LEVEL VARIOUS, WE
USED THE PRINCIPAL COMPONENT --
BETWEEN THOSE 20 INDICATORS AND
THEN VARIABLES THAT HAD A PCA
LOADING ABOVE 0.25 WERE RETAINED
IN OUR NDI AND INCLUDED THESE
SIX VARIABLES HERE.
AND THEN OVERALL, LOWER NDI
VALUES INDICATE LESS
DEPRIVATION, HIGHER NDI VALUES
INDICATE GREATER DEPRIVATION.
TO BETTER UNDERSTAND THE
NEIGHBORHOOD DEPRIVATION IN OUR
COHORT, WE STARTED BY JUST
CHARACTERIZING IT, SO LOOKING AT
NDI ON A CONTINUOUS SCALE AND
BREAKING THAT DOWN BY RACE AS
WELL AS SAMPLE TYPE.
SO WE CAN SEE VERY CLEARLY THAT
BLACK PARTICIPANTS IN OUR COHORT
ACTUALLY HAD THE HIGHEST -- I'M
SORRY SH BLACK PARTICIPANTS HAVE
SIGNIFICANTLY HIGHER DEPRIVATION
LEVELS COMPARED TO THE WHITE
PARTICIPANTS IN OUR COHORT.
WE SAW THIS REGARDLESS OF TISSUE
TYPE.
WE CAN ALSO SEE THAT THE BLACK
PARTICIPANTS IN OUR STUDY THAT
HAVE BREAST CANCER ACTUALLY HAD
THE HIGHEST MEDIAN NDI IN OUR
COHORT, ALTHOUGH IT WAS NOT
SIGNIFICANTLY DIFFERENT THAN THE
BLACK WOMEN WITHOUT BREAST
CANCER.
WHEN WE CONSIDERED MOLECULAR
BREAST CANCER SUBTYPES INCLUDING
HORMONE RECEPTOR POSITIVE, HER-2
POSITIVE AND TRIPLE NEGATIVE,
THOSE WITH TRIPLE NEGATIVELY
WERE THE HIGHEST PROPORTION OF
WOMEN WITH HIGH NDI COMPARED TO
ANY OF THE OTHER MOLECULAR
SUBTYPES, AND THIS WAS SLIGHTLY
OVER SIGNIFICANCE AT -- WE NEXT
WANTED TO IDENTIFY SPECIFIC CPG
SITES THAT WERE ASSOCIATED WITH
A PATIENT'S NEIGHBORHOOD
DEPRIVATION STATUS.
INCLUDING HOW THEY MAY RELATE TO
CANCER DRIVER GENES.
THIS IS A VOLCANO PLOT OF OUR
PROBES FROM THE METHYLATION
ANALYSIS, AND THIS WAS ONLY DONE
IN TUMOR TISSUE.
ON THE Y AXIS, WE HAVE THE
NEGATIVE LOG OF THE UNADJUSTED P
VALUE FOR EACH CPG SITE.
THE X AXIS SHOWS THE AVERAGE
DIFFERENCE IN BETA VALUES
BETWEEN NDI HIGH PATIENTS VERSUS
NDI LOW PATIENTS.
SO IN THIS ANALYSIS, THERE WERE
FIVE CPG SITES THAT WERE
SIGNIFICANTLY HYPOMETHYLATED IN
THE NDI HIGH GROUP.
THIS IS USING A BONVERONI
CORRECTED VALUE.
YOU CAN SEE THE GENES ASSOCIATED
WITH THOSE CPGs.
MOST OF THIS IS OCCURRING WITHIN
THE GENE BODY REGION,
INTERESTINGLY ENOUGH.
AND I WANTED TO POINT OUT TWO OF
THESE GENES IN MORE DETAIL.
LRIG1 IS A TUMOR SUPPRESSOR
GENE.
IT HAS IMPLICATIONS IN SQUAMOUS
CELL CARCINOMAS AS WELL AS
ADENOCARCINOMAS AND WWX ACTS AS
A TUMOR SP SUPPRESSOR GENE AS W.
VERY INTERESTING THAT THOSE TWO
CAME OUT OF THIS ANALYSIS.
A BIT MORE ABOUT LRG1, IT'S A
TUMOR SUPPRESSOR AND THERE'S
BEEN A LOT OF WORK ON LRIG1 IN
BREAST CANCER AND IT'S ACTUALLY
BEEN SHOWN THAT LOWER EXPRESSION
OF THIS GENE IS AN INDEPENDENT
RISK FACTOR FOR BREAST CANCER
METASTASIS AND DEATH.
IN TWO EXAMPLES WE SUE DECREASED
OR HYPOMETMETHYLATION OF THE SIE
AS NEIGHBORHOOD DEPRIVATION
VALUES ARE INCREASING.
WE CAN SEE THAT AS WELL IN OUR
QUARTILES.
AND SINCE THIS CPG IS LOCATED IN
THE GENE BODY REGION, THIS MIGHT
ACTUALLY RESULT IN DECREASED
TRANSCRIPTION OF THIS TUMOR
SUPPRESSOR IN OUR NDI HIGH
GROUP.
WE DID HAVE A LIMITED NUMBER OF
RNA SEQ TUMOR SANL PEL S SAMPLEE
ABLE TO LOOK DIRECTLY AT GENE
EXPRESSION AND WE SEE THE SAME
NEGATIVE CORRELATION AS WE DID
WITH THE METHYLATION DATA,
INDICATING AN OVERALL LOSS OF
LRID1 GENE EXPRESSION FOR THOSE
INDIVIDUALS WITH HIGH NDI.
I ALSO LOOKED AT SURVIVAL FROM
TCGA DATA SPECIFICALLY FOR
LRIG1, AND AS EXPECTED, WE CAN
SEE THAT LOW GENE EXPRESSION OF
LRIG1 IS ASSOCIATED WITH
SIGNIFICANTLY DECREASED
SURVIVAL.
IN LOOKING AT WWOX, WHICH ALSO
SERVES AS A TUMOR SUPPRESSOR,
DELETIONS IN THE CODING SEQUENCE
OF THIS GENE ARE COMMONLY SEEN
IN BREAST CANCER CASES.
I THINK IT'S AROUND 80%.
AND DECREASED GENE EXPRESSION
HERE IS ALSO ASSOCIATED WITH THE
WORST PROGNOSIS AND HIGHER
MORTALITY.
SO SIMILAR TO LRIG1, WE SAW THIS
DECREASE IN METHYLATION IN THE
CPG ASSOCIATED WITH WWOX, AND
AGAIN, THIS WAS LOCATED IN THE
GENE BODY.
SO FOR THE HIGHER NDI GROUPS,
THIS RESULTS IN LOWER
TRANSCRIPTIONAL ACTIVITY FOR
THIS TUMOR SUPPRESSOR GENE.
THEN ONCE AGAIN FROM THE RNA SEQ
DATA, WE SEE SIMILAR RESULTS AS
WE DID WITH LRIG1.
OVERALL FROM THIS ANALYSIS, WE
CAN CONCLUDE THAT HIGHER
NEIGHBORHOOD DEPRIVATION IS
ASSOCIATED WITH HIGHER
METHYLATION OF BREAST TUMORS AND
THIS MAY HAVE A ROLE IN
IMPACTING TUMOR SUPPRESSOR
GENES.
THEN OUR FINAL TAKE-HOME MESSAGE
FROM THE STUDY, WE SEE THAT
NEIGHBORHOOD ENVIRONMENTS CAN
INDEED IMPACT OUR EPIGENETICS,
WHICH CAN POTENTIALLY INCREASE
OUR CANCER RISK AND EXACERBATE
CANCER DISPARITIES.
I JUST WANT TO ACKNOWLEDGE THE
WONDERFUL MEMBERS OF BOTH OF MY
LABS IN DCEG, AND ACKNOWLEDGE MY
COLLABORATORS, DR. MARTINI, AS
WELL AS DR. MELISSA DAVIS.
THANK YOU SO MUCH FOR ATTENDING.
[APPLAUSE]
>>THANK YOU, BRITTANY, AND
DR. LORD, FOR A WONDERFUL TALK.
WE'LL TAKE QUESTIONS NOW.
FROM THE AUDIENCE AND ALSO IF
YOU'RE TUNING IN ONLINE, PLEASE
SEND THEM VIA SLIDO.
>>HI.
VERY INTERESTING.
>>THANK YOU.
>>IS THIS WORKING?
YES?
OKAY.
SO MAYBE I MISSED HOW YOU DID
THIS, BUT I WAS INTRIGUED BY THE
NDI HIGH VERSUS LOW ANALYSIS,
BECAUSE DUE TO THAT REALLY
STRIKING DIFFERENCE WITHIN RACE,
I WOULD EXPECT THAT THAT
ANALYSIS WOULD BE CONFOUNDED BY
RACE.
SO HOW DO YOU TACKLE THAT?
>>YES, ABSOLUTELY.
SO AS YOU SAY -- AND NDI ARE
VERY TIGHTLY CORRELATED.
WE WERE ABLE TO LOOK AT WWOX AND
LRIG1 METHYLATION AND GENE
EXPRESSION STRATIFIED BY RACE,
AND WE DO STILL SEE SIGNIFICANT
ASSOCIATIONS SPECIFICALLY IN
AFRICAN AMERICAN WOMEN WITH
THESE TUMOR SUPPRESSORS.
SO IT CONFOUNDED BY RACE BUT
WHEN WE SEPARATE BY RACE, WE
STILL SEE THE SIGNIFICANT
ASSOCIATIONS FOR BLACK WOMEN.
>>GO AHEAD AND BACK.
>>HI, GREAT TALK.
SO METHYLATION CHANGES ARE
ASSOCIATED WITH AGING.
>>YES.
>>I WAS WONDERING WHETHER, IN
YOUR WORK, YOU'VE BEEN ABLE TO
LOOK AT WHETHER SOME OF THESE
POPULATIONS HAVE AXILLARY --
AGING OR ANYTHING RELATED TO
AGING?
>>GREAT QUESTION.
SO AS I DISCUSSED BEFORE,
EPIGENETIC OR CELLULAR AGING IS
VERY COMMON, ESPECIALLY WITH
THESE RISK FACTORS THAT WE'RE
INVESTIGATING.
WE ACTUALLY HAVEN'T BEEN ABLE TO
LOOK YET.
THERE'S A WAY TO LINK
METHYLATION DATA WITH EPIGENETIC
CLOCKS TO LOOK AT CELLULAR
AGING.
WE HAVEN'T DONE THAT YET, BUT IT
WOULD BE INTERESTING TO SEE HOW
THAT CORRELATES WITH
NEIGHBORHOOD DEPRIVATION FOR
SURE.
>>AND WE ALSO HAVE A QUESTION
FROM ONLINE.
IT SAYS GREAT TALK, WERE YOU
ABLE TO ADJUST FOR CONFOUNDERS
SUCH AS BODY SIZE AND PARITY?
>>INTERESTING.
SO IN LOOKING AT DIFFERENCES IN
THE NDI HIGH AND LOW POPULATION,
WE ACTUALLY DIDN'T SEE
DIFFERENCES IN PARITY BETWEEN
THE TWO GROUPS.
I BELIEVE THERE WERE SIGNIFICANT
DIFFERENCES IN BMI, BUT FOR THIS
ANALYSIS, WE FOCUSED ON AGE AND
WE FOCUSED ON ADJUSTING FOR
RACE.
JUST BECAUSE THOSE TWO WERE SO
IMPACTFUL IN THE NDI ITSELF.
SO WE DIDN'T ADJUST FOR BMI, BUT
IT WOULD BE INTERESTING TO GO
BACK AND LOOK AND SEE.
>>PLEASE GO AHEAD IN THE BACK.
>>HI.
MY NAME IS LEA.
I'M FROM MOUNT SINAI.
YEAH, THANK YOU FOR THIS
WONDERFUL TALK, AND I WANTED TO
ASK IN OUR WORK SOMETHING WE'VE
BEEN TALKING A LOT ABOUT SORT OF
RELATED TO WHAT YOU WERE SAYING
ABOUT RACE CONSCIOUS MEDICINE
AND KIND OF LIKE GOING --
LOOKING AT RACE AS LIKE THIS
INHERENT THING AND SEEING IT
MORE AS LIKE THE -- STRUCTURAL
RACISM AND ANCESTRY.
SPECIFICALLY FOR GUIDELINES AND
RECOMMENDATIONS FOR SCREENING,
KIND OF LIKE IN BREAST CANCER,
PROSTATE CANCER, STUFF LIKE
THAT, I WAS WONDERING IF YOU HAD
ANY THOUGHTS ABOUT -- OBVIOUSLY
WE NEED TO BE ADDRESSING THE
STRUCTURAL AND LIKE, YOU KNOW,
KIND OF UPSTREAM DETERMINANTS,
BUT LIKE KIND OF HOW TO TALK
ABOUT RISK IN A WAY THAT DOESN'T
FURTHER ENTRENCH IDEAS OF RACE
IS BIOLOGICAL BUT THEN TO SORT
OF LIKE, YOU KNOW, MAKE SURE
THAT PEOPLE ARE GETTING SCREENED
TOO.
>>YEAH.
SO GREAT QUESTION.
I THINK SELF-REPORTED RACE HAS A
PLACE IN DISPARITIES RESEARCH.
I THINK IF YOU'RE DOING SOCIAL,
SOCIALLY CONSCIOUS WORK,
ENVIRONMENTAL WORK, YOU KNOW,
RACE IS A SOCIAL CONSTRUCT.
SO IT WOULD MAKE SENSE TO USE
IT.
WHICH IS WHY I USED IT IN THIS
ANALYSIS.
BUT IF YOU CAN COLLECT
QUANTIFIED GENETIC ANCESTRY
DATA, THAT'S EVEN BETTER TO HAVE
BOTH.
AS FAR AS RISK IS CONCERNED, I
THINK JUST BEING CONSCIOUS OF
THE FACT THAT NOT ALL
INDIVIDUALS IDENTIFY IN ONE
PARTICULAR RACIAL GROUP, SO WE
USE THE TERM BLACK IN THIS
COUNTRY, BUT WHAT DOES THAT
ACTUALLY MEAN?
SO WE SAW YESTERDAY,
DR. MARTINI'S TALK, THERE'S
INCREDIBLE GENETIC HETEROGENEITY
AND THAT'S GOING TO IMPACT THE
RISK OF THESE PARTICULAR
POPULATIONS.
SO JUST BEING AWARE OF THAT AND
BEING CONSCIOUS OF THAT WHEN
WE'RE THINKING ABOUT SCREENING
AND THINGS LIKE THAT, I THINK IS
REALLY IMPORTANT.
YEAH.
>>ALL RIGHT.
WELL, THANK YOU, DR. LORD.
>>THANK YOU.
[APPLAUSE]
s
>>ALL RIGHT.
WHILE WE GET OUR NEXT SPEAKER'S
PRESENTATION UP, I'D LIKE TO
INTRODUCE DR. JENNIFER
MCGEE-AVILA, PLEASE BEAR WITH US
FOR ANY TECHNICAL ISSUES, BUT
DR. MCGEE-AVILA IS ALSO A CANCER
PREVENTION FELLOW IN THE
DIVISION OF CANCER EPIDEMIOLOGY
AND GENETICS.
ALL RIGHT, DR. MCGEE-AVILA, YOU
ARE GOOD TO GO.
>>CAN YOU HEAR ME, DR. HARRIS?
>>YES, WE CAN HEAR YOU.
>>OKAY.
PERFECT.
THANK YOU.
AND YOU'RE SEEING THE CORRECT
VERSION OF MY SLIDES?
>>YES, WE ARE.
>>GREAT.
THANK YOU.
GOOD MORNING, EVERYONE.
I APOLOGIZE FOR BEING UNABLE TO
BE WITH YOU ALL TODAY IN PERSON.
MY NAME IS JEN MCGEE-AVILA.
MY PRONOUNS ARE SHE AND HER.
I'M A CURRENT CANCER PREVENTION
POSTDOC FELLOW AND TODAY I'LL BE
PRESENTING SOME WORK ON CANCER
TREATMENT INEQUITIES IN PEOPLE
WITH HIV IN THE U.S. DURING THE
YEARS OF 2001 TO 2019.
SO I'D LIKE TO START MY TALK
WITH JUST A QUICK CENTERING ON
THE UNIQUE RELATIONSHIP BETWEEN
HIV AND CANCER.
HIV CAN CAUSE PERSONS TO HAVE AN
ELEVATED RISK OF CANCER
DEVELOPMENT, AND HAVING HIV, WE
WEAKENS THE IMMUNE SYSTEM AND
REDUCES THE BODY TO FIGHT VIRAL
INFECTIONS THAT ALSO MAY LEAD TO
CANCER.
THERE ARE SEVERAL VIRUSES THAT
ARE MORE LIKELY TO CAUSE CANCER
IN PEOPLE WITH HIV.
AND IN ADDITION, PEOPLE WITH HIV
ARE MORE LIKELY TO HAVE THESE
ADDITIONAL VIRUSES THAN PEOPLE
IN THE GENERAL POPULATION.
SO CANCER RISK IS ELEVATED IN
PERSONS WITH HIV, AND
TRADITIONALLY CANCERS HAVE BEEN
CATEGORIZED AS EITHER
NON-AIDS-DEFINING CANCERS AND
AIDS-DEFINING CANCERS, WHICH
MEANS IMMUNOSUPPRESSION HAS
PROGRESSED TO AIDS.
AND HERE I'VE LISTED THREE
AIDS-DEFINING CANCERS IN
PARTICULAR.
AND KAPOSI SARCOMA IS MOST
CLOSELY ASSOCIATED WITH HIV
SINCE RATES ARE SO MUCH MORE
ELEVATED IN PERSONS WITH HIV.
AND FOR NON-AIDS-DEFINING
CANCERS, THESE ARE SOME OF THE
MORE COMMON CANCERS BUT BY NO
MEANS IS THIS AN EXHAUSTIVE
LIST, AND SO IN ADDITION, THE
PREVALENCE OF SOME TRADITIONAL
RISK FACTORS FOR CANCERS, FOR
EXAMPLE, SMOKING AND HEAVY
ALCOHOL USE, IS ALSO HIGHER
AMONGST PEOPLE WITH HIV.
SO THE CENTRAL QUESTION THAT
THIS RESEARCH PROJECT REALLY
SOUGHT TO ANSWER WAS HOW
INEQUITIES IN CANCER TREATMENT
FOR PEOPLE WITH HIV IMPROVED.
SO TO ANSWER THAT, WE REALLY
NEED TO UNDERSTAND PEOPLE WITH
HIV AND CANCER EXPERIENCE HIGHER
CANCER-SPECIFIC MORTALITY THAN
PEOPLE WITHOUT HIV.
AND IN WORK DONE BY ANNA COGHILL
AND COLLEAGUES, THEY REPORTED
THE ROLE OF HIV ON
CANCER-SPECIFIC MORTALITY RATES,
AND AS YOU CAN SEE, THEY ARE ALL
ELEVATED FOR THE CANCER SITES
LISTED HERE, AND ONE
HYPOTHESIZED REASON FOR ELEVATED
MORTALITY RATES IS DUE TO
DISPARITIES ALSO IN THE RECEIPT
OF CANCER TREATMENT.
SO DISPARITIES EXIST ALONG THE
CANCER CARE CONTINUUM, AND
PEOPLE WITH HIV HAVE POORER
SURVIVAL RATES, HIGHER
CANCER-SPECIFIC MORTALITY AND
ARE LESS LIKELY TO RECEIVE
CANCER TREATMENT.
AND IN ADDITION, THERE ARE
DISPARITIES OF QUALITY OF CANCER
TREATMENT RECEIVED RELATED TO
TREATMENT DELAY, LOWER DOSE OF
TREATMENT RECEIVED, AND NOT
RECEIVING GUIDELINE-CONCORDANT
CARE.
AND INTERESTINGLY ENOUGH, IN
WORK DONE BY JESSICA AND
COLLEAGUES, PEOPLE WITH HIV ARE
ACTUALLY MORE LIKELY TO RECEIVE
PALLIATIVE CARE IN LIEU OF KEEM
THEIR WHEN DIAGNOSED WITH STAGE
I, 2 OR 3 CANCER, YET THEY ARE
LESS LIKELY TO RECEIVE
PALLIATIVE CARE FOR STAGE IV
CANCER.
SOMSOME SOME OF THE REALLY FOUL
WORK SHOWN IN THIS AREA HAS
SHOWN THAT HIV STATUS HAS BEEN
ASSOCIATED WITH NON-RECEIPT OF
STANDARD OF CARE TREATMENT FOR
LOCAL STAGED CANCERS, WHICH IS
REALLY IMPORTANT SINCE THAT'S A
MISSED OPPORTUNITY.
SO CANCER TREATMENT DISPARITIES
ARE MULTILEVEL AND
MULTIFACTORIAL, AND IN WORK
ADAPTED BY THE SAME ONCOLOGIST,
SHE HIGHLIGHTS SEVERAL REASONS
FOR TREATMENT DISPARITIES AT THE
PATIENT, PROVIDER AND HEALTHCARE
SYSTEM LEVELS.
AND AN EXAMPLE OF A PATIENT
LEVEL DRIVER IS THE DUAL BURDEN
OF TWO CHRONIC CONDITIONS, AND
HERE'S AN EXAMPLE QUOTE THAT'S
PULLED FROM SOME QUALITATIVE
WORK IN WHICH THE PERSON STATED,
IT MADE ME FEEL LIKE SERIOUSLY,
WHAT NEXT?
NOW YOU GOT TWO DOZEN DIAGNOSES?
DEALING WITH BOTH IS A DOUBLE
BULLET.
AN EXAMPLE OF A PHYSICIAN-LEVEL
DRIVER HAS BEEN HYPOTHESIZED AS
LACK OF INTERDISCIPLINARY
COLLABORATIONS, AND
UNFORTUNATELY WE DON'T HAVE
GREAT DATA ABOUT THE CARE TEAM
COMPOSITION OF PEOPLE WITH HIV
OR FIRST DIAGNOSED WITH CANCER,
HOWEVER, WE CANNOT UNDERSCORE
THE IMPORTANCE OF CARE
COORDINATION BETWEEN INFECTIOUS
DISEASE AND ONCOLOGY DOCS.
AN EXAMPLE OF SYSTEMS LEVEL
BARRIER HAS BEEN POOR HEALTHCARE
ACCESSIBILITY WITH PEOPLE WITH
HIV BEING MORE LIKELY TO EITHER
BE UNINSURED OR UNDERINSURED.
SO WE WANTED TO UPDATE A PRIOR
ANALYSIS THAT EXAMINED CANCER
TREATMENT DISPARITIES IN PEOPLE
WITH HIV AND WE HAD TWO
OVERARCHING AIMS FOR THIS
PROJECT.
THE FIRST WAS TO ASSESS RECEIPT
OF ANY CANCER TREATMENT AMONG
PEOPLE WITH HIV COMPARED TO
THOSE WITHOUT, THEN WE REPEATED
THE SAME ANALYSIS FOR LOCAL
STAGE CANCERS TO ASSESS THE
RELATIONSHIP BETWEEN HIV STATUS
AND RECEIPT OF STANDARD
TREATMENT MODALITIES.
AND THE NEXT THEME, WE EXAMINED
PREDICTORS OF TREATMENT AMONG
PEOPLE WITH HIV.
AND TO ANSWER THESE AIMS, WE
UTILIZED THE HIV/AIDS CANCER
MATCH STUDY, WHICH INVOLVES A
LINKAGE OF 13 CANCER REGISTRIES
WITH HIV SURVEILLANCE DATA.
THE LINKAGE INVOLVES SO
HERE'S JUST AN OVERVIEW OF OUR
STUDY OF POPULATION.
THERE ARE APPROXIMATELY 16,700
PEOPLE WITH HIV AND A LITTLE
OVER 3 MILLION PEOPLE WITH
CANCER THAT WERE INCLUDED IN
THIS PARTICULAR STUDY.
THE MOST COMMON CANCERS IN
PEOPLE WITH HIV WERE LUNG,
DIFFUSE LARGE B CELL LYMPHOMA,
AND PROSTATE CANCER.
IN PEOPLE WITHOUT HIV, IT
DIFFERED SLIGHTLY.
IT HAPPENED TO BE BREAST,
PROSTATE AND LUNG CANCER.
SIMILAR TO THE HIV EPIDEMIC,
APPROXIMATELY THREE FOURTHS OF
PEOPLE WITH HIV WERE MALE WHILE
THE REMAINING QUARTER WERE
FEMALE.
THE AGE AT CANCER DIAGNOSIS
TENDED TO BE YOUNGER IN PEOPLE
WITH HIV, WITH ALMOST TWO THIRDS
OF DIAGNOSES OCCURRING IN THOSE
AGED 45 TO 65.
AND WHEN WE LOOK AT THE RACIAL
ETHNIC BREAKDOWN, IT'S SIMILARLY
ALSO NEAR THAT OF THE HIV
EPIDEMIC IN THE U.S.
SO WHEN WE LOOKED AT WHAT CANCER
SITES WERE LESS LIKELY TO
RECEIVE TREATMENT, YOU CAN SEE
ALL SITES HAD AN INCREASED ODDS
OF NO JOB TO
TREAT THE HIV, IT'S REALLY ONLY
TO WORRY ABOUT THE CANCER OR
VICE VERSA.
SO I THINK A LOT OF THE TIMES,
PATIENTS EITHER AREN'T -- WELL,
ACTUALLY I GUESS I CAN ONLY
SPECULATE, BUT MY FEELING FROM
BEING WITH IMMERSED IN THE HIV
CARE AND TREATMENT WORLD FOR
MANY YEARS BEFORE COMING TO NCI
IS THAT FOLKS ARE EITHER
UNDERTREATING PEOPLE WITH HIV OR
THEY'RE USING THE HIV AS AN
EXCUSE OR POTENTIAL CAUTION TO
NOT TREAT CANCER AS AGGRESSIVELY
AS THEY WOULD IN THOSE WITHOUT
HIV, AND SO I FEEL LIKE THAT'S
WHY IT IS SO IMPORTANT TO HAVE
ACTUAL GUIDANCE WITH THE NCC AND
CANCER GUIDELINES.
THEY ONLY WERE RELEASED IN LATE
2018/2019, SO THERE'S STILL SO
MUCH WORK TO BE DONE TO SEE, YOU
KNOW, FOR THOSE CLINICIANS,
ESPECIALLY WI WITHIN HIGH HIV
PREVALENCE, GIVEN INDIVIDUALS
KNOW WHO TO GO TO IF THEY HAVE
TREATMENT CONCERNS ABOUT
TOXICITY, YOU KNOW, ONE OF THE
OTHER THINGS I SHOULD SAY UP
FRONT TOO, WE DON'T HAVE ANY
INFORMATION ON THE ADDITIONAL
COMORBIDITIES THAT MIGHT BE IN
THIS POPULATION, SO WE DON'T
KNOW IF MAYBE TREATMENT IS
WITHHELD BECAUSE OF ADDITIONAL
COMORBIDITIES, BUT I STILL
THINK, YOU KNOW, FUTURE WORK IS
ALSO WARRANTED TO SEE HOW DO WE
ACHIEVE EQUITY WITHIN THIS
POPULATION.
>>THANK YOU.
YES, PLEASE AT THE BACK, GO
AHEAD.
>>THANK YOU.
CAN YOU HEAR ME?
>>YES, I CAN.
>>MY NAME IS JENNIFER
LANGELEER, I WORK AT THE
NATIONAL RURAL ONCOLOGY
COLLABORATIVE, SO WE'RE A PILOT
STUDY PROGRAM WORKING ON BRAIN
CANCER TO RURAL HOSPITALS AND
RURAL COMMUNITIES.
JUST A COMMENT THAT ACTUALLY AS
I STOOD UP HERE, YOU MENTIONED
IT, IS ON THE GROUND, WE'RE
REALLY SEEING QUITE A BIT OF
STIGMA, JUST EVEN JUST AROUND
CANCER AND PEOPLE COMING TO GET
TREATMENT.
BUT ALSO NOW WITH HIGH LEVELS OF
HIV IN THE SOUTH, THAT DOUBLE
WHAMMY STIGMA OF HIV AND CANCER
IN RURAL AND JUST KIND OF WANTED
TO COMMENT TO SEE IF THERE WAS
ANYTHING YOU HAD LOOKED AT IN
REGARDS TO RURALITY.
>>NO, UNFORTUNATELY I HAVE NOT
LOOKED AT RURALITY IN RELATION
TO THESE OUTCOMES.
UNFORTUNATELY SOME OF THE STATES
THAT WE COULD REALLY -- YOU
KNOW, THAT UNFORTUNATELY ARE
BEARING THE BRUNT OF HIV WITHIN
THE SOUTH, MISSISSIPPI, ALABAMA,
WE DO HAVE LGBTQIA, THEY ARE
ACTUALLY NOT INCLUDED IN OUR HIV
CANCER MATCH STUDY, SO I THINK
WE STILL DEFINITELY HAVE WORK TO
DO, BUT I ALSO THINK THAT IT'S
BY STATE, BY REGION, BY COUNTY,
IT CAN BE SO INCREDIBLY GRANULAR
THAT THE THINGS THAT ARE
RELEVANT AND IMPORTANT IN THE
CONTEXT IN THAT GIVEN LOCALE
MIGHT BE SO DIFFERENT.
THE NICE THING ABOUT THIS IS
WE'RE JUST TALKING ABOUT
TREATMENT DISPARITIES OVERALL
AND THE HOPE IS THEN TO DO A
DEEPER DIVE TO UNDERSTAND WHAT
MIGHT BE THE FACILITATORS OR THE
MECHANISMS WITHIN THESE
SPECIFICALLY LOCALES, EVEN IF
YOU LOOK AT POLICY, YOU KNOW,
ONE OF THE VARIABLES THAT WE
DON'T HAVE IN THIS INFORMATION
IS INSURANCE COVERAGE.
WHAT IS O DOES OUR POPULATION LK
LIKE, WHO IS PAYING FOR CANCER
TREATMENT?
IS IT RYAN WHITE, IS IT
MEDICAID, ARE THEY RECEIVING
CHARITY CARE, THEY'RE NOT ABLE
TO ENS A THAT ANSWER THAT WITHA
BUT IT WARRANTS FURTHER
EXPLORATION AND IT'S REALLY
IMPORTANT TO ACHIEVE EQUITY FOR
A POPULATION AT INCREASED VUL
NERVULNERABILITY AND STIGMA.
>>THANK YOU.
>>WELL, PLEASE GIVE ANOTHER
HAND FOR DR. MCGEE-AVILA.
[APPLAUSE]
GIVE US A MOMENT TO TRANSITION
TO OUR NEXT SPEAKER, WHICH IS
ME.
ALL RIGHT.
CAN EVERYONE HEAR ME ALL RIGHT?
OKAY.
SO I'M GOING TO BE CLOSING OUT
TODAY'S SESSION, AND I'M REALLY
HONORED TO FOLLOW TWO AMAZING
SPEAKERS BEFORE ME AND SHARE A
LITTLE BIT ABOUT A REE RECENT
PROJECT I'VE BEEN WORKING ON IN
THE LABORATORY OF HUMAN
CARCINOGENESIS IN CCR.
AS YOU'VE PROBABLY NOTICED MANY
OF THE TALKS SO FAR ARE CHASING
REALLY IMPORTANT QUESTIONS IN
THE DISPARITIES FIELD AT THE
POPULATION LEVEL.
SO IT MIGHT BE A LITTLE JARRING
GOING FROM SUCH A MACROSCOPIC
SCALE TO SUCH A MICRO SCROPG ONE
WITH THE WORK THAT I'LL PRESENT
TODAY.
BUT MY HOPE IS TO MAKE THIS TALK
AS ACCESSIBLE AND NOT BORING AS
POSSIBLE, AND HOPEFULLY CONVINCE
YOU THAT WE CAN REALLY LEVERAGE
CELL LINES TO ANSWER INTERESTING
QUESTIONS REGARDING GENETIC
ANCESTRY IN BREAST CANCER IN
WOMEN OF AFRICAN DESCE DESCENTST
ALSO TO PROVIDE SOME GUIDANCE
FOR THOSE WORKING WITH THESE
CELL LINES EVERY DAY AT THE
BENCH.
SO WE'VE HEARD A LOT SO FAR AND
WE ALSO KNOW FROM A WEALTH OF
LITERATURE THAT WOMEN OF AFRICAN
DESCENT HAVE A DISPROPORTIONATE
RISK OF DYING FROM A FORM OF
GRES TRIPLE NEGATIVE BREAST
CANCER ACROSS ALL POPULATION
GROUPS.
IN THE UNITED STATES, TRIPLE
NEGATIVE BREAST CANCER ACCOUNTS
FOR APPROXIMATELY 12% OF BREAST
CANCERS ON AVERAGE.
WHEN BROKEN DOWN BY RACE, WE SEE
THAT BLACK WOMEN ARE TWICE AS
LIKELY TO DEVELOP THIS
AGGRESSIVE DISEASE.
SO DESPITE HAVING A GENERALLY
LOWER INCIDENCE RATE, BLACK
WOMEN IN THE UNITED STATES ARE
40% MORE LIKELY TO DIE FROM
THEIR BREAST CANCER COMPARED TO
WHITE WOMEN.
AND THIS DISPARITY IN SURVIVAL
IS, AS WE'VE HEARD ALREADY IN
THIS SYMPOSIUM, EXTREMELY
COMPLEX AND A MULTIFACTORIAL
PROBLEM ATTRIBUTABLE TO BOTH
SOCIAL DETERMINANTS AND ALSO
BIOLOGICAL DETERMINANTS OF
HEALTH AND LIKELY A VERY DYNAMIC
INTERACTION BETWEEN THE TWO.
SO IT'S BELIEVED THAT GENETIC
FACTORS DO CONTRIBUTE IN PART TO
THE INCREASED RISK OF
BIOLOGICALLY AGGRESSIVE TUMOR
SUBTYPES.
AND SOME STUDIES HAVE INDICATED
THAT THE EXTENT OF AFRICAN
ANCESTRY ITSELF CORRELATES WITH
THE LIKELIHOOD OF BEING
DIAGNOSED WITH MORE AGGRESSIVE
BREAST CANCER SUBTYPES THAN
WOMEN FROM OTHER POPULATION
GROUPS.
SO RESEARCHERS HAVE FOUND THAT
TNBC IS MORE PREVALENT IN
AFRICAN AMERICAN WOMEN WHO CAN
TRACE THEIR ANCESTRY TO WESTERN
SUB-SAHARAN AFRICA.
AND INDEED IN SUB-SAHARAN
AFRICA, BREAST CANCER IS ALSO A
LEADING CAUSE OF DEATH.
OF CANCER DEATH AMONG AFRICAN
WOMEN.
AND MANY STUDYS HAVE FOUND THAT
TRIPLE NEGATIVE BREAST CANCER IS
MORE PREVALENT IN WESTERN
NATIONS LIKE GHANA -- WELL,
YOU'RE WELCOME FOR USING WEBEX.
[LAUGHTER]
SO YES, SO THERE'S CERTAINLY A
LOT THAT WE STILL DON'T KNOW
REGARDING THE EXTENT THIS BREAST
CANCER IN AFRICA IS -- BREAST
CANCER IN AFRICAN AMERICAN WOMEN
AND GENETIC ANCESTRY IN
PARTICULAR TO DISEASE
AGGRESSIVENESS.
SO THIS IS A VERY COMPLEX ISSUE
IN RESEARCH THAT'S FURTHER
COMPLICATED BY THE FACT THAT
MANY STUDIES IN THE U.S. USE
SELF-REPORTED RACE AS A PROXY
FOR ANCESTRY, AND WE GOT A GREAT
PRIMER ON THAT FROM LORD, AND
ALSO RECENT STUDIES BY MELISSA
DAVIS' GROUP INCLUDING WORK LED
BY DR. RACHEL MARTINI WHO'S IN
THE FRONT ROW AND GAVE A
FANTASTIC TALK YESTERDAY THAT I
HOPE EVERYONE HAD A CHANCE TO
HEAR, HAVE BEGAN TO REALLY KIND
OF DISENTANGLE SELF-REPORTED
RACE FROM ANCESTRY.
IN THIS STUDY, FINDING THAT
ALMOST 50% OF GENE EXPRESSION
ASSOCIATED WITH ANCESTRY WAS
DISTINCT FROM THAT ASSOCIATED
WITH SELF-REPORTED RACE.
IN TRIPLE NEGATIVE BREAST
CANCERS FROM ADDMIXED AFRICAN
AMERICAN WOMEN.
SO WE WERE REALLY INTERESTED IN
THIS AND DECIDED TO TAKE THE
ABSOLUTE MOST REDUCTIONIST
APPROACH POSSIBLE TO LOOK AT HOW
GENETIC ANCESTRY INFLUENCED THE
PROPERTIES IN A DISH DERIVED
FROM EITHER AFRICAN AMERICAN
WOMEN OR EUROPEAN-AMERICAN
WOMEN.
SO WE'RE USING THESE HUMAN
TRIPLE NEGATIVE BREAST CANCER
CELL LINES THAT ARE ACTUALLY
INCREDIBLY COMMON IN BIOMEDICAL
RESEARCH.
FOR THOSE THAT AREN'T FAMILIAR
WITH THE TERM CELL LINES, SO
THESE ARE CELLS THAT WERE
ORIGINALLY ISOLATED FROM A
PATIENT TUMOR AND CAN BE
CULTURED ALMOST INDEFINITELY IN
THE LAB.
AND UNDER THE PROPER GROWTH
CONDITIONS, THEY CAN RETAIN MANY
OF THE SAME GENETIC
WHERE THERE WAS AN EXTREME
MISCLASSIFICATION ERROR IN A
CELL LINE.
THIS CAN NEGATIVELY IMPACT THE
FIELD IN MANY WAYS.
SO I THINK THAT VIGILANCE IS
IMPORTANT HERE WHEN YOU'RE
WORKING WITH THESE IN THE LAB.
NOW THAT I'VE DELIVERED MY
FRIENDLY PSA, WE DECIDED TO TAKE
AN EPIGENETIC APPROACH BECAUSE
THE EPIGENETICS OF RACIAL AND
POPULATION DIVERSITY IN THE
CONTEXT OF TRIPLE NEGATIVE
BREAST CANCER IS GENERALLY AN
UNDERINVESTIGATED AREA.
SO WE PERFORMED SOMETHING CALLED
ATAC SEQUENCING TO PROFILE
BASICALLY HOW OPEN OR CLOSED THE
DNA IS IN THESE CELLS.
AND THIS CAN GIVE US A TON OF
INFORMATION NOT ONLY ABOUT GENE
EXPRESSION BUT ALSO ABOUT
TRANSCRIPTION FACTOR ACTIVITY
AND GENE REGULATORY NETWORKS.
WE HAD TWO MAIN GOALS IN THIS
STUDY, SO FIRST TO UNDERSTAND IF
THERE ARE DIFFERENCES IN
CHROMATIN ACCESSIBILITY BETWEEN
EA D DERIVED AND AA DERIVED CELL
LINES AND ALSO HOW DO THOSE
DIFFERENCES IMPACT THE BIOLOGY
OF THESE CANCER CELLS IN
MEANINGFUL WAYS.
SO WE WONDERED WHETHER CHROMATIN
PROFILES EVEN SEPARATED BY
GENETIC ANCESTRY, AND IT TURNS
OUT THAT THEY DO, WHICH YOU CAN
SEE HERE ON THIS PCA.
AND WHEN WE LOOKED AT
DIFFERENTIALLY OPEN OR
ACCESSIBLE REGIONS AT KIND OF A
ZOOMED OUT BIRD'S-EYE VIEW
ACROSS CHROME ZONES, WE SAW
AFRICAN AMERICAN CELLS SHOWED A
DISTINCT CHROMATIN PATTERN OF
ACCESSIBILITY SO THIS KIND OF
GAVE US AN INDICATION THAT THERE
MAY INDEED BE SOME GENOME-WIDE
DIFFERENCES IN CHROMATIN BY
GENETIC ANCESTRY.
SO NEXT WE WONDERED, DOES
TRANSCRIPTION FACTOR BINDING AND
ACTIVITY DIFFER BY GENETIC
ANCESTRY IN TRIPLE NEGATIVE
BREAST CANCER?
BUT FIRST WHY DO WE CARE ABOUT
TRANSCRIPTION FACTORS?
SO TRANSCRIPTION FACTORS ARE A
CLASS OF PROTEIN THAT IS
ABSOLUTELY ESSENTIAL FOR
REGULATING GENE EXPRESSION.
AND THEY DO SO BY BINDING DNA AT
SPECIFIC PLACES CALLED MOTIFS.
AND THIS CAN ALTER THE CHROMATIN
ENVIRONMENT.
AND IMPORTANTLY, WHEN THINGS GO
WRONG, WHICH THEY OFTEN DO IN
CANCER, USUALLY THROUGH
MUTATIONS OR DYSREGULATION OF
SOME KIND, TRANSCRIPTION FACTORS
CAN ACTUALLY END UP MAKING
CANCER A LOT WORSE.
SO PERHAPS UNSURPRISINGLY THEY
PLAY A CRITICAL ROLE IN BOTH
CANCER INITIATION AND ALSO
PROGRESSION SO THERE'S ACTUALLY
A LOT OF RESEARCH THAT'S
DEDICATED TO HOW TO POTENTIALLY
TARGET THESE THINGS
THERAPEUTICALLY.
SO TO ANSWER OUR QUESTION WE
FIRST IDENTIFIED CHROMATIN
REGIONS THAT WERE DIFFERENTIALLY
OPEN OR ACCESSIBLE BY ANCESTRY.
AND THEN WE LOOKED WITHIN EACH
OF THOSE REGIONS OF THESE MOTIFS
AND PLOTTED HERE IS A HEAT MAP
SHOWING THE TOP 50 MOST VARIABLE
TRANSCRIPTION FACTORS BY
ANCESTRY.
AND I'M NOT GOING TO BORE YOU BY
GETTING TOO INTO THE WEEDS HERE,
BUT I'LL SUMMARIZE IT BY SAYING
THAT TRIPLE NEGATIVE BREAST
CANCER CELLS FROM AFRICAN
AMERICAN WOMEN, WE SAW AN
OVERABUNDANCE IN CERTAIN
TRANSCRIPTION FACTORS --
FAMILIES AND SUBFAMILIES, MANY
OF WHICH HAPPEN TO HAVE SUPER
WEIRD NAMES LIKE THERE'S GRAINY
HEAD AND FORK HEAD BOX, WHICH IS
CANCER CELL LINES ARE USED
ROUTINELY IN BIOMEDICAL AND
PRE-CLINICAL STUDIES AND FOR
BETTER OR FOR WORSE, THESE ARE
THE DISCOVERY TOOLS IN CANCER
RESEARCH.
SO THIS MEANS THAT ISSUES AND A
LACK OF RIGOR AT THIS MOST BASIC
LEVEL CAN ACTUALLY HAVE PRETTY
PROFOUND RIPPLE EFFECTS LATER ON
IN THE BIOMEDICAL RESEARCH AND
DRUG DEVELOPMENT PIPELINE.
MUCH LIKE GENETIC STUDIES AND
CLINICAL TRIALS AT THE
MACROSCOPIC LEVEL, WE SEE TH THE
SAME ISSUE CONTINUE AT THE
MICROSCOPIC LEVEL, WHERE THERE
REMAINS A REALLY
YOUR ATTENTION.
[APPLAUSE]
AND PERHAPS, STEFAN, YOU CAN
MODERATE ANY SLIDO QUESTIONS
THAT COME IN.
>>THANKS FOR A GREAT TALK.
I WAS REALLY INTERESTED IN YOUR
FINDING ABOUT THE P53 IN THAT
CONNECTIVITY NETWORK, AND I JUST
WONDERED, THINKING ABOUT THE
DRIVER MUTATIONS, WE KNOW THAT
P53 MUTATIONS ARE MORE COMMON IN
BLACK WOMEN, AND IS IT A FACTOR
THAT'S CONTROLLED FOR IN THESE
KINDS OF ANALYSES WHAT THE
DRIVER MUTATIONS ARE IN EACH OF
THESE DIFFERENT TRIPLE NEGATIVE
CELL LINES OR IS THERE MUCH
DIVERSITY WITH RESPECT TO THOSE
MUTATIONS IN THESE LINES?
>>THAT'S A GREAT QUESTION.
THANK YOU SO MUCH.
YES, SO ACTUALLY EACH OF THESE
LINES -- WHAT YOU SAID IS
COMPLETELY TRUE, BUT IT JUST SO
HAPPENED THAT EACH OF THESE
LINES DO HAVE P53 MUTATIONS,
WHICH IS INTERESTING.
I DON'T KNOW THE EXACT NATURE OF
THOSE MUTATIONS.
I KNOW WHAT I'VE BEEN ABLE TO
PULL FROM ATCC, WI BUT I THINK T
THAT'S KIND OF INTERESTING IN
AND OF ITSELF THAT, WHILE ALL
THE LINES HAVE P53 MUTATIONS,
WHICH IS SO COMMON IN TRIPLE
NEGATIVE BREAST CANCER CELLS, WE
SAW THAT SIGNAL POP OUT
SPECIFICALLY ASSOCIATED WITH
AFRICAN ANCESTRY.
SO DEFINITELY SOMETHING THAT I
THINK SHOULD BE EXPLORED
FURTHER.
>>THANK YOU.
>>FANTASTIC TALK.
SO MAYBE I MIGHT HAVE MISSED IT,
BUT IN YOUR PCA ANALYSIS, THEY
NICELY SEPARATE BASED ON THE
ANCESTRY, AND I WONDER IF
THERE'S OTHER -- IF YOU SEE ANY
SKEW IN OTHER POTENTIALLY
CONFOUNDING FACTORS LIKE --
CULTURE -- [INAUDIBLE] CELL
LINES WERE ESTABLISHED, THAT'S
MY FIRST QUESTION.
THEN SECONDLY I WAS STRUCK BY
YOUR FINDINGS IN -- [INAUDIBLE]
SO I WONDER IF THE METHYLATION
PATTERN [INAUDIBLE]
>>THANK YOU SO MUCH.
THOSE ARE BOTH GREAT QUESTIONS.
SO TO ANSWER YOUR QUESTION
FIRST, I THINK IT'S A REALLY
IMPORTANT ONE.
SO THESE EXPERIMENTS WERE DONE,
ALL THE LINES WERE GROWING IN
TANDEM, BUT HAVE NOT
INVESTIGATED SPECIFICALLY
LOOKING AT SOME OF THOSE
FACTORS, BUT IT IS IMPORTANT TO
REMEMBER THAT THINGS DO CHANGE
AS CELL LINES CONTINUE, AND MORE
PASSAGES ARE INCURRED.
GENERALLY WE TRY TO DO OUR DUE
DILIGENCE AND KEEP THINGS IN
LOGARITHMIC PHASE OF GROWTH AND
MAKE SURE THEY DON'T GET PAST A
CERTAIN POINT WITH PASSAGE
NUMBER, BUT DEFINITELY SOMETHING
THAT NEEDS TO BE CONTROLLED FOR.
AND RELATIVE TO YOUR SECOND
QUESTION, CAN YOU REPEAT THE
TARGETS THAT YOU MENTIONED?
I DIDN'T CATCH THEM.
>>[INAUDIBLE]
>>SO IT'S REALLY INTERESTING.
SO RIGHT NOW WE'RE ACTUALLY KIND
OF WORKING ON CHASING SOME OF
THOSE LEADS.
I DO THINK, LIKE, BECAUSE OF --
THAT METHYLATION WOULD BE A VERY
LOGICAL NEXT STEP IN THIS STUDY,
BUT NOT SOMETHING THAT WE'VE
INVESTIGATED SPECIFICALLY.
THANK YOU.
GLG HI.
REALLY ENGAGING TALK.
SO MY QUESTION IS RELATED TO
DRIVER MUTATIONS AND IN YOUR
CELL LINE MODEL, ARE YOU ABLE TO
MEASURE THINGS LIKE TUMOR
MUTATION BURDEN?
BECAUSE THAT COULD POTENTIALLY
BE VERY HELPFUL IF YOU'RE REALLY
TRYING TO DRAW PARALLELS BETWEEN
WHAT CAN BE DONE CLINICALLY AND
WHAT YOU'RE TRYING TO DO IN A
DISH.
>>THAT'S ANOTHER GREAT
QUESTION.
SO WE HAVE KIND OF A GENERAL
UNDERSTANDING OF SOME OF THE
MAIN, YOU KNOW, SOURCES OF
MUTATIONS, KIND OF THE BIG ONES
THAT WE WERE ABLE TO PULL FROM
ATCC, BUT THAT SAID, I THINK
THOSE DATA DEFINITELY EXIST, YOU
KNOW, IN REPOSITORIES AND IT'S
SOMETHING THAT WE COULD LOOK AT
MORE SPECIFICALLY, WE JUST
HAVEN'T YET, BUT THAT'S A GREAT
QUESTION.
THANK YOU.
>>HI.
GREAT TALK.
I JUST HAD TWO GENERIC QUESTI
QUESTIONS.
I THINK I MAY HAVE MISSED IT IN
YOUR PATHWAY ENRICHMENT
ANALYSIS, BUT IN YOUR FINDINGS
AS FAR AS THE GENES, DID YOU SEE
ANY GENES ASSOCIATED WITH
RESISTANCE AS FAR AS AFRICAN
ANCESTRY COMPARED TO THE
EUROPEAN ANCESTRY?
>>WITH THERAPEUTIC RESISTANCE?
YES. Y
>Y>>YES, WE DID.
THERE WERE A FEW THAT JUMPED OUT
THAT WERE ASSOCIATED WITH
THERAPEUTIC RESISTANCE.
I CAN'T FOR THE LIFE OF ME OF
COURSE RECALL THEM AT THE
MOMENT, BUT I THINK THAT
GENERALLY IT WAS SOMETHING THAT
WE SAW.
I THINK THE HYPOXIA SIGNATURE IS
ALSO A LITTLE BIT OF INTEREST IN
TERMS OF THAT.
SO WE FOUND A FEW KIND OF LINES
OF EVIDENCE THAT WOULD SUPPORT
THAT WHAT WE ARE FINDING IS
ASSOCIATED, MAYBE, WITH
THERAPEUTIC RESISTANCE.
AND I THINK PROBABLY AN
INTERESTING NEXT STEP WOULD BE
TO FOLLOW UP ON THAT WITH SOME
EXPERIMENTAL WORK TO TRY
DIFFERENT COMMON THERAPIES OUT
IN THESE LINES AND SEE WHAT
THEIR RESPONSE IS.
AND ALSO THERE'S SOME
REPOSITORIES THAT HAVE SOME OF
THAT INFORMATION ALREADY IN
TERMS OF TESTING DIFFERENT
COMMON DRUGS AND CELL LINES SO
WE'RE GOING TO LEAN INTO THAT AS
WELL BUT THAT'S A GREAT QUESTION
AND I GOOD, I THINK, NEXT STEP
FOR THIS WORK.
>>COOL.
ALSO IN THE LAB, DID YOU
ACTUALLY SEE WITH THESE SPECIFIC
CELL LINES WITH AFRICAN ANCESTRY
THAT THEY PROLIFERATED MORE
RAPIDLY THAN THE OTHER CELL
LINES?
>>SUCH A GOOD QUESTION.
THAT'S ACTUALLY SOMETHING THAT
I'VE NOT DIRECTLY TESTED
ALTHOUGH IT WOULD BE SOMETHING
VERY EASY TO AND PROBABLY
SHOULD, AND I THINK PROBABLY
WHEN WE SUBMIT THIS WORK, A
REVIEWER WILL PROBABLY
DEFINITELY ASK FOR THIS
EXPERIMENT.
SO DOING EDU, SOMETHING LIKE
THAT WOULD BE GREAT TO ANSWER
BECAUSE WE SAW THESE KIND OF
SIGNALS THAT JUMPED OUT THAT ARE
ASSOCIATED WITH PROLIFERATION,
BUT DIRECTLY TESTING IT IS
DEFINITELY THE NEXT STEP TO
FOLLOW UP EXPERIMENTALLY.
THANK YOU.
GREAT QUESTIONS.
>>THANK YOU.
THANK YOU FOR A GREAT
PRESENTATION.
I THINK YOU ALREADY ADDRESSED
THIS WITH THE FIRST ANSWER THAT
YOU JUST GAVE NOW BUT I WAS
ASKING ABOUT THE AFRICAN
ANCESTRY LINES AND THEN THE --
AND IF YOU EXPLORE TARGETING --
RESPONSE IN THE AA LINE AS
OPPOSED TO THE EA LINES IN TERMS
OF UTILIZING -- DUE TO THE
HYPOXIA ENVIRONMENT YOU JUST
DESCRIBED.
>>I THINK THAT THIS AUDIENCE IS
TOTALLY ON IT, AND I SHOULD BE
TAKING NOTES FOR NEXT
EXPERIMENTAL STEPS HERE.
YOU KNOW, THERE IS A LOT OF WORK
IN THE FIELD RIGHT NOW
ESPECIALLY AFTER JOHN KARPTON'S
RECENT PUBLICATION LOOKING AT
HYPOXIA AND DID SEE THOSE
DIFFERENCES BY RACE, SO I THINK
A LOT OF PEOPLE ARE KIND OF
CHASING THIS THOUGHT THAT
HYPOXIA MAY BE MORE COMMONLY
SEEN IN TMBC IN AFRICAN AMERICAN
WOMEN.
IT'S NOT SOMETHING THAT WE'VE
PARTICULARLY TESTED YET, BUT
CERTAINLY SOMETHING THAT CAN BE
DONE, ESPECIALLY GIVEN ALL OF
THE EVIDENCE POINTING TO THAT WE
SEE THE SAME KIND OF THING IN
OUR CELL LINES AS WE DO IN
PATIENT TUMORS.
SO I THINK GREAT NEXT STEP.
>>I CAN MAYBE SAY SOMETHING
BRIEFLY.
SO WHEN WE STARTED THE
EXPERIMENT, ALL THOSE QUESTIONS
CAME UP THAT THESE CELL LINES
ARE SO HETEROGENEOUS AND IT
LOOKED LIKE YOU CANNOT FIND
SOMETHING.
WHAT WE DID, WE FOUND REALLY
SOMETHING VERY SIGNIFICANT
ASSOCIATED WITH ANCESTRY
>>ALL RIGHT.
SO LET'S GET STARTED WITH THE
AFTERNOON PROGRAM.
BRIEFLY, I WOULD LIKE TO THANK
ALL OF THE POSTER PRESENTERS FOR
THEIR POSTERS.
EXCELLENT POSTERS.
ALSO WOULD LIKE TO THANK
EVERYBODY WHO CAME TO THE
POSTERS,.
IT'S VERY, VERY IMPORTANT THAT
THEY GET THE RECOGNITION.
SECONDLY, WE WOULD LIKE TO GET
FEEDBACK FROM YOU.
I'M SAYING IT NOW.
SO PLEASE MAYBE THROUGH SLIDO,
YOU CAN PROVIDE FEEDBACK ON THE
CONFERENCE.
MAY ACTUALLY MAKE SOME
SUGGESTIONS FOR THE NEXT
CONFERENCE, WHAT WE SHOULD
INCLUDE, WHAT WE HAVE NOT
INCLUDED.
AND I WANTED TO SAY SOMETHING,
IF YOU'VE SEEN WE HAVE QUITE
SOME FELLOWS BEING CHAIRS OF
SESSIONS AND I CAN TELL YOU FROM
OUR EXPERIENCE, IT'S GREAT,
THOSE FELLOWS ARE JUST
FANTASTIC, AND APPLAUSE TO THE
FELLOWS, PLEASE, AND -- OKAY.
[APPLAUSE]
AND I WANT TO HAND OVER TO
CONSTANZA THE CHAIR FOR THE NEXT
SESSION.
>>THANK YOU, DR. AMBS.
GOOD AFTER NOORNTION EVERYONE.
I'M CONSTANZA CAMARGO, I'M AN
INVESTIGATOR IN THE DIVISION OF
CANCER EPIDEMIOLOGY AND GENETICS
AT THE NATIO NATIONAL CANCER
INSTITUTE.
OUR MISSION IS PART OF THE
INTRAMURAL PROGRAM OF NCI.
I WANT TO ECHO DR. AMBS' WORDS
ABOUT THE POSTER SESSION.
WE HAVE A GREAT SESSION AND WE
THANK MORE THAN 50 PRESENTERS
THAT WE HAD, VERY EXCITED TO
RECEIVE SO MANY APPLICATION.
WE ARE GOING TO TURN TO SESSION
NUMBER 13, AND IN THIS SESSION,
WE ARE GOING TO ADDRESS CANCER
DISPARITY RESEARCH IN THE
DIVISION OF CANCER EPIDEMIOLOGY
AND GENETICS.
WE HAVE THREE PRESENTERS.
WE ARE GOING TO HAVE
PRESENTATIONS OF 20 MINUTES
FOLLOWED BY FIVE MINUTES FOR
QUESTIONS.
THE FIRST PRESENTER, IT IS MY
PLEASURE TO INTRODUCE DR. BARRY
GRAUBARD.
HE IS SENIOR INVESTIGATOR.
HE'S A BIOSTATISTICIAN, HE'S A
MEMBER OF THE BIOSTATISTICS
BRANCH IN OUR DIVISION, AND HE'S
GOING TO TALK ABOUT THE
PORTFOLIO OF DCEG FOR HEALTH
DISPARITIES AND SOME FUTURE
PLANS.
WELCOME, DR. GRAUBARD.
[APPLAUSE]
>>THANK YOU VERY MUCH, KA
STANZA.
CONSTANZA.
I'M NOT GOING TO SAY MUCH ABOUT
THE PORTFOLIO BECAUSE I DON'T
HAVE MUCH INFORMATION AT THIS
TIME, BUT I'LL TALK ABOUT SOME
RESEARCH, BECAUSE I'M A
BIOSTATISTICIAN, I'M GOING TO
TALK ABOUT SOME STATISTICAL
RESEARCH THAT WE'RE INVOLVED
WITH, AND ALSO SPEND A FAIR
AMOUNT OF TIME ON A PARTICULAR
THING DEALING WITH FUTURE PLANS.
OKAY.
SO AS I SAID, THIS IS THE
OUTLINE OF MY TALK, AND I JUST
BASICALLY WENT OVER THAT.
FIRST WILL BE A LITTLE BIT ABOUT
THE RESEARCH, AND SOME OF THE
RECOMMENDATIONS OF A HEALTH
DISPARITIES ADVISORY GROUP FOR
OUR DIVISION, THE DIVISION OF
CANCER EPIDEMIOLOGY AND
GENETICS.
AND THEN I'LL TALK ABOUT SOME
ONGOING STATISTICAL METHODOLOGY,
AND ALSO THIS DATA.
SO AT THE END OF NOVEMBER, OUR
DIVISION CONVENED AN ADVISORY
GROUP TO HELP ADVISE THE
DIVISION LEADERSHIP ON HOW TO --
ON FOCUSING OUR PROGRAM MORE
TOWARDS CANCER HEALTH
DISPARITIES WITHIN OUR
PORTFOLIO.
AND THE PANEL CONSISTED OF
EXTRAMURAL RESEARCHERS FROM
UNIVERSITIES AND OTHER PLACES,
AND THEN THROUGHOUT THE NIH, AND
ALSO WITHIN OUR DIVISION.
SO IN PREPARATION FOR THIS
ADVISORY GROUP, THERE WAS A
LITTLE SURVEY THAT WAS DONE, AND
I'LL SAY JUST A FEW WORDS ABOUT
THAT.
SO THE SUMMARY FROM THE SURVEY
ABOUT THE ONGOING RESEARCH IN
OUR DIVISION, AND BY THE WAY,
YOU'VE HEARD A LOT OF SPEAKERS
HERE FROM OUR DIVISION, I THINK
MAINLY POSTDOCS AND RESEARCH
FELLOWS WHO FRANKLY I JUST WANT
TO SAY, THEY'RE THE REAL ENGINE
FOR OUR DIVISION IN TERMS OF
COMING UP WITH EXCELLENT
RESEARCH STUDIES AND SO FORTH.
BUT THIS ACTUAL SURVEY WAS
REALLY DONE TO THE PIs,
QUERYING THEM ABOUT ONGOING
PROJECTS.
THIS STATEMENT HERE BASICALLY
SAYS THAT LARGELY A LOT OF THE
STUDIES THAT HAVE BEEN DONE IN
HEALTH DISPARITIES IN OUR
DIVISION, THEY'RE KIND OF
ONE-OFF THINGS RELYING ON
PUBLICLY AVAILABLE RESOURCES
WHISTWHICH SELDOM CONTAIN
SINGLE-SOURCE HIGH QUALITY DATA
ON DEMOGRAPHIC FACTORS, RISK
BEHAVIORS, INDIVIDUAL-LEVEL AND
NEIGHBORHOOD-LEVEL
SOCIOCONTEXTUAL FACTORS, WITH
ACCESS TO HEALTHCARE AND HEALTH
SEEKING BEHAVIORS, SO FORTH, HOW
MUCH CAN THEY CONTRIBUTE TO THE
DIFFERENCES WE'RE SEEING IN
CANCER INCIDENCE OUTCOMES AND
STAGING AND QUALITY OF
HEALTHCARE.
SO YOU KNOW, SO AS THE DATA --
THE DATA WE HAVE IS JUST NOT
RICH ENOUGH IN THE ABOVE
VARIABLES, AND I'LL SAY A LITTLE
BIT MORE WHEN I TALK ABOUT THIS
NEW RESOURCE THAT WE'RE TRYING
TO GET TOGETHER, AND THAT WILL
HAVE THE VARIABLES WE NEED TO
TRY TO EXPLAIN SOME OF THE
DISPARITIES WE'RE ACTUALLY
SEEING.
SO TWO AREAS THAT WERE
IDENTIFIED BY THIS ADVISORY
GROUP, ONE IS THE NEED FOR DOING
MORE EPIDEMIOLOGY AND
BIOSTATISTICAL METHODOLOGICAL
RESEARCH INTO --
[PLEASE STAND BY]
>>IT'S JUST RESTARTING.
IT WILL BE UP IN A SECOND.
>>MAYBE I SHOULD TALK FROM
MEMORY HERE AND NOT FROM THE
SLIDES.
SO -- NO, MAYBE I SHOULD WAIT.
MAYBE I'LL SCREW IT UP.
[LAUGHTER]
>>I HAVE MY SLIDES HERE.
SO THERE ARE TWO ASPECTS.
WTHE ADVISORY GROUP AND ALSO THE
PEOPLE IN OUR DIVISION FELT THAT
WE NEED MORE METHODOLOGY TO
INCLUDE THESE FACTORS THAT I
JUST LISTED EARLIER TO TRY TO
EXPLAIN HEALTH DISPARITIES.
THE OTHER WAS A NEED FOR
METHODOLOGICAL WORK TO COMBINE
MULTIPLE REPRESENTATIVE SAMPLES
AND OFTEN THESE SAMPLES INVOLVE
COMPLEX SURVEY SAMPLES, AND I'LL
SAY MORE ABOUT THAT AT THE END,
BUT THESE SURVEYS AND THE
SAMPLES THAT THEY'RE ASKING US
TO MAKE BETTER USE OF WOULD
REPRESENT THE U.S. POPULATION
OVERALL IN A REPRESENTATIVE
FASHION, OKAY?
THE OTHER AREA AS I SAID WITH
DEVELOPMENT OF NEW DATA
RESOURCES, AND THE
RECOMMENDATION WAS THAT WE
HARNESS EXPERTISE AND EXPERIENCE
IN WORKING WITH REGISTERED
LINKED DATA TO CREATE NOVEL
RESOURCES OF RESEARCH, AND SO
THIS -- HERE WE ARE.
SO THE SECOND BULLET WAS AN
ATTEMPT TO -- WE'VE BEEN
INTERESTED IN USING TWO OF THE
MAJOR NATIONAL HEALTH SURVEYS,
THE NATIONAL HEALTH INTERVIEW
SURVEY, AND THE NHANES, THE
NATIONAL HEALTH AND NUTRITION
EXAMINATION SURVEY.
AND THEIR RICH DATA TO LOOK AT
SOCIAL DETERMINANTS OF HEALTH
AND ALSO MULTILEVEL FACTORS.
BACK TO MY SLIDES HERE.
SO I WAS GOING TO SAY A FEW
WORDS ABOUT TWO THINGS THAT WE
WERE WORKING ON TO TRY TO
PARTITION OBSERVED DISPARITIES
THAT WE SEE IN THE DATA.
SO YOU HAVE TWO GROUPS AND ONE
IS AN DISADVANTAGED GROUP,
THAT'S GROUP 1, AND GROUP 2 IS
THE ADVANTAGED GROUP.
YOU HAVE SOME QUANTITATIVE
VARIABLE, NOT BINARY.
SO I'M GOING TO BE USING BMI AS
AN EXAMPLE.
AND THAT DIFFERS BETWEEN THE TWO
GROUPS.
NORMALLY YOU WOULDN'T BOTHER
WITH THIS UNLESS YOU SAY OH, I
SEE AN OBSERVED DIFFERENCE
BETWEEN THE ADVANTAGED GROUP AND
THE DISADVANTAGED GROUP.
AND THEN WE NEED TO RELY ON SOME
SORT OF DATA, COVARIATES, WHERE
WE CAN TRY TO EXPLAIN WHAT THAT
DIFFERENCE MIGHT BE, AND SEE HOW
MUCH WE CAN EXPLAIN OF THE
OBSERVED DIFFERENCE IN THE MEANS
AND THEN HOW MUCH CAN WE NOT
EXPLAIN.
SO THAT'S WHAT THIS SECOND --
THIS LAST BULLET HERE IS.
AND SO THIS USES A METHOD THAT'S
SOMETIMES CALLED PETERS BELSON
REGRESSION METHOD BUT IT'S VERY
SIMILAR TO WHEN ECONOMISTS
SOMETIMES USE WAHAKA LONG TERM
METHOD.
SO THE IDEA IS THE FIT
REGRESSION TO THE ADVANTAGED
GROUP.
SO THAT MEANS THAT WE HAVE THE
OUTCOME, AND WE HAVE THE Xs
FOR THE GROUP 2 AND WE FIT THAT
REGRESSION ONLY TO THAT GROUP.
AND THEN WE OBTAIN THE PREDICTED
Ys OR THE OUTCOME FOR EACH
DISADVANTAGED INDIVIDUAL AT
THEIR PARTICULAR Xs, USING THE
ESTIMATED COEFFICIENTS FROM THE
ADVANTAGED GROUP UP HERE.
THEN YOU CAN SHOW VERY EASILY
JUST -- IT'S JUST SIMPLE, THAT
YOU CAN THEN PARTITION THE HE
OBSERVED DISPARITY INTO TWO
PARTS.
THE PART THAT'S EXPLAINED BY THE
Xs THAT YOU HAVE AVAILABLE TO
YOU, AND THEN THE PART THAT YOU
CAN'T EXPLAIN.
THIS IS JUST AN EXAMPLE.
THIS IS LOOKING AT BMI BY RACE
IN THE NHANES, AND YOU HAVE TWO
RACES, WHITE AND BLACK, AND THIS
IS AMONG WOMEN.
SO THE WHITE WOMEN ON AVERAGE,
THEIR MEAN BMI IS SMALLER THAN
THE BLACKS.
AND THEN YOU CAN PREDICT USING
THIS KIND OF COUNTERFACTUAL
CALCULATION THAT I JUST
MENTIONED THAT IF THE BLACKS HAD
BEEN WHITE, THEN THEIR MEAN BMI
WOULD HAVE BEEN 28.4 USING THAT
REGRESSION I JUST DESCRIBED.
HOWEVER THAT, IT TURNS OUT, THIS
OBSERVED DIFFERENCE OF THOSE
COVARIATES ONLY EXPLAIN 18%,
ABOUT, OF DISPARITY, AND 82% IS
UNEXPLAINED.
AND THESE WERE THE COVARIATES
THAT I USED DOWN HERE AT THE
BOTTOM.
SO THAT'S HOW THAT WORKS.
SO WHAT WE'VE DONE IS, WE'VE
SAID, WELL, YOU KNOW, THIS IS
VERY GOOD FOR LOOKING AT LIKE A
MEAN DISPARITY BETWEEN TWO
GROUPS WHEN YOU TALK ABOUT A
CONTINUOUS VARIABLE.
BUT MAYBE THE DISPARITY VARIES
ACROSS THE PERCENTILES.
PEOPLE THAT HAVE LOW BMI
COMPARED TO THE PEOPLE THAT HAVE
HIGHER BMI.
MAYBE THE TYPE OF DISPARITY THAT
EXISTS IS GOING TO CHANGE, IT'S
GOING TO GET BIGGER OR SMALLER,
AND THE EFFECT OF THE COVARIATES
ALSO DIFFER SO THE AMOUNT YOU
EXPLAIN MAY DEPEND ON WHERE YOU
ARE IN TERMS OF THE PERCENTILES.
I USE THE WORD QUANTILE ALSO IN
PLACE OF PERCENTILES HERE.
AND SO IT MAY ACCOUNT FOR
DIFFERENTIALLY -- MAY ACCOUNT
DIFFERENTIALLY ACROSS -- FOR THE
DISPARITIES ACROSS THE
PERCENTILES.
SO THIS LEADS TO SOMETHING
CALLED QUANTILE REGRESSION
RATHER THAN JUST LINEAR
REGRESSION WHICHS WAY DOING
BEFORE.
THIS WORK WAS DONE BY GRACE HONG
AND OTHERS THAT WE WORKED WITH.
SO THIS IS JUST SHOWING THE
RESULTS OF THAT.
THIS FIRST GRAPH HERE IS THE --
IS BASICALLY THE OBSERVED BMIs
AT EACH QUANTILE IN THE
POPULATION.
AND YOU CAN SEE FOR THE ASIANS,
IT'S SUPPOSED TO BE ORANGE, IT
LOOKS KIND OF YELLOW, THAT'S THE
BOTTOM ONE, AND THE PINK ONE,
WHICH IS IN HERE, IT'S KIND OF
BIG -- IT'S BELOW THE RED ONE,
THAT'S THE NON-HISPANIC WHITES,
AND THEN THE RED IS THE
HISPANICS AND THE BLACK IS
BLACKS, AND YOU CAN SEE THAT THE
DIFFERENCE, OF COURSE, DIFFERS,
OKAY?
AND YOU WOULD EXPECT THAT
BECAUSE AS YOU GET INTO HIGHER
BMI, THERE'S MORE VARIABILITY
OFTEN IN THOSE VALUES.
NOW, YOU CAN USE THIS QUANTILE
REGRESSION SIMILARLY TO THE
PETERS BELSON WITH RESPECT TO
LINEAR REGRESSION, AND YOU CAN
SEE THAT THE DISPARITY, YOU'LL
SEE NEGATIVE BMIs HERE BECAUSE
WE'RE LOOKING AT THE WHITES
MINUS THE BLACKS AS WE GO ALONG
ACROSS THE PERCENTILES, AND OF
COURSE THE BLACKS HAVE HIGHER
BMI, SO THE BMI IS ACTUALLY --
SO THE DIFFERENCE BECOMES
NEGATIVE.
BUT YOU CAN SEE AS YOU INCREASE
THE QUANTILES OR PERCENTILES,
THAT THE DIFFERENCE GETS BIGGER
AND KIND OF LEVELS OFF HERE
ABOUT THE 25TH PERCENTILE, IT
BOUNCES AROUND A LITTLE AND GOES
DOWN.
THE SHADED AREA IS THE
CONFIDENCE INTERVAL.
YOU CAN SEE THAT THE PATTERNS
ARE DIFFERENT FOR TH THE HISPAN,
WHERE ACTUALLY AT THE 75TH
PERCENTILE, THERE IS NO
DISPARITY.
IT'S AT ZERO.
AND THEN IT GOES -- THEN IT
FLIPS IN THE OTHER DIRECTION,
WHERE NOW THE HISPANICS ARE
ACTUALLY -- HAVE SMALLER BMI.
AND THEN THE ASIANS HAVE ALSO
VERY INTERESTING PATTERNS HERE.
THE OTHER APPROACH WE USE IS
SOMETHING CALLED THE -- CURVES.
NOW I'M NOT GOING TO SAY TOO
MUCH ABOUT THIS, BUT LORENZ
CURVE IS VERY POPULAR IN
ECONOMICS TO LOOK AT THE
INEQUALITY OF INCOME OR OTHER
FINANCIAL OR MONETARY VALUES.
SO IT LOOKS AT THE
NON-UNIFORMITY OR THE INEQUALITY
IN THESE INDIVIDUAL LEVEL
VARIABLES, AND THE EXTENT OF THE
NON-UNIFORMITY IS CHARACTERIZED
BY THE MAGNITUDE OF THE
DISPARITY.
SO THE LORENZ CURVE IS THE PLOT
OF THE PORTION OF THE SHARE OF
THE TOTAL POPULATION OF THE SUM
OF THE Ys.
SO IF I'M GOING TO APPLY THIS TO
BMI, IT'S GOING TO BE THE SUM OF
THE POPULATION WISE NORMALIZED
FOR THE POPULATION SIZE HERE, I
HAVE TO NORMALIZE FOR POPULATION
SIZE, SO EACH RACIAL GROUP HAS
THE SAME POPULATION SIZE.
WE MAKE THAT ADJUSTMENT.
AND WHAT WE'VE DONE IS WE'VE
EXTENDED THIS LORENZ CURVE IDEA,
AS I SAID, TO HEALTH
DISPARITIES, AND WE'VE ALSO
CREATED SOMETHING A LITTLE
DIFFERENT THAN THE STANDARD
LORENZ CURVE AND I JUST WANTED
TO POINT OUT WHAT THAT IS.
WE CALL IT A RELATIVELY LORENZ
CURVE.
AND THAT'S BECAUSE ON THE X AXIS
HERE IS THE PERCENTILE OF BMI IN
A -- IN WHAT WE CALL AN IDEAL
GROUP, WE CALL IT THE HEALTHY
GROUP.
THESE ARE PEOPLE THAT DON'T HAVE
ANY CHRONIC CONDITIONS
BASICALLY, HEART, DIABETES,
THINGS LIKE THAT.
AND THEN WE PLOT THE CUMULATIVE
DISTRIBUTION AS THEY FALL IN THE
PERCENTILES OF THE BMI, AND SO
LET ME JUST MOVE ON TO THE
NEXT -- SO FOR PEOPLE -- THE
BLUE CURVE IS THE NON-HISPANIC
WHITES AND THE BLACK CURVE ARE
THE BLACKS -- I'M SORRY -- IS
THE HEALTHY GROUP HERE.
ACTUALLY THE RED CURVE IS
NON-HISPANIC BLACKS HERE.
AND YOU CAN SEE THAT THE FURTHER
THE CURB DIPS DOWN BELOW THE
DIAGONAL, THAT MEANS THERE'S
MORE INEQUALITY, THERE'S MORE
DISPARITY THERE, AND FOR THE
HEALTHY GROUP, IT'S CLOSE TO THE
DIAGONAL, IT'S THE CLOSEST ONE
AS YOU WOULD EXPECT.
THERE'S GOING TO BE LESS
INEQUALITY THERE, BUT THE BLUE
CURVE FOR THE NON-HISPANIC
WHITES IS THE SECOND CLOSEST
ONE, AND THE BLACKS ARE DOWN
FURTHER AND SO AT THE 50TH
PERCENTILE FOR BLACKS THAT ARE
AT THE -- THE NON-HISPANIC
BLACKS THAT ARE AT THE 50TH
PERCENTILE IN THE HEALTHY GROUP,
THAT ACCOUNTS FOR ONLY 15% OF
THEIR TOTAL CUMULATIVE BMI IN
THEIR POPULATION WHEREAS FOR THE
WHITES, IT'S 35%.
SO THAT KIND OF QUANTIFIES
WHAT'S GOING ON THERE.
ANOTHER WAY TO QUANTIFY IT IS TO
DO SOMETHING THAT YOU MIGHT HAVE
HEARD OF CALLED THE GENIE INDEX.
THE GENIE INDEX IS TWICE THE
AREA BETWEEN THE DIAGONAL AND
THE CURVE, AND THAT GIVES YOU
ANOTHER CHARACTERIZATION OF THE
EXTENT OF THE DISPARITY.
OKAY.
SO OKAY.
SO WHERE I'D LIKE TO SPEND THE
REST OF THE TIME IS ABOUT
DEVELOPING A NEW DATA RESOURCE.
SO IN OUR DIVISION, AND I THINK
IN A LOT OF PARTS OF
EPIDEMIOLOGY, COHORTS HAVE BEEN
CENTRAL TO CANCER EPIDEMIOLOGY
RESEARCH.
MANY -- THERE ARE FREQUENT
LIMITATIONS OF EXISTING COHORTS,
I MEAN, THEY OFTEN HAVE LIMITED
RACE/ETHNIC MINORITIES, THEY'RE
NOT DIVERSE IN SES, THEY CAN BE
BETTER EDUCATED, HIGHER INCOME,
THEY LACK POPULATION
REPRESENTATIVENESS BECAUSE
THEY'RE OFTEN SPECIALIZED GROUPS
OR THEY'RE JUST VOLUNTEERS.
THESE COHORTS ARE STAGNANT
OFTEN.
ONCE THEY COLLECT THEM, THEY'RE
CLOSED.
THAT'S NOT TRUE FOR ALL COHORTS,
BUT THEY TEND TO BE THAT WAY.
SO THE POPULATION OF THE UNITED
STATES IS NOT STAGNANT, IT
CHANGING ALL THE TIME.
AND THEY'RE LIMITED WITH RESPECT
TO VARIOUS TYPES OF IMPORTANT
VARIABLES THAT MAKE IT EASY FOR
US TO TRY -- OR MAKE IT BETTER
FOR US TO TRY TO ADDRESS HEALTH
DISPARITIES.
SO WE NEED A BETTER RESOURCE,
AND I'M GOING TO TALK ABOUT WHAT
I JUST MENTIONED, A LINKAGE
BETWEEN THE NATIONAL HEALTH
INTERVIEW SURVEY, IT'S A
HOUSEHOLD SURVEY DONE EVERY YEAR
BY THE NATIONAL CENTER FOR
HEALTH STATISTICS, AND THE
NHANES, THE NATIONAL HEALTH
NUTRITION EXAMINATION SURVEY.
TAKING THEIR DATA FROM -- NHIS
FROM 1997 ON AND THE NHANES FROM
1999 ON.
NHANES IS PUBLISHED EVERY TWO
YEARS, THEY COME OUT WITH NEW
DATA.
THE DATASETS DIFFER IN VARIOUS
AMOUNTS.
BASICALLY THE NHIS IS INTERVIEW
DATA SURVEY, AND THE NHANES IS
BOTH INTERVIEW AND EXAMINATION.
SO THEY COLLECT BLOOD.
I THINK EVERYBODY HERE PROBABLY
KNOWS ABOUT WHAT THEY HAVE, BUT
IT'S A VERY RICH DATASET.
HOUR, IT'S SMALLER, ONLY ABOUT
5,000 ADULTS ARE INTERVIEWED AND
COLLECTED DATA FROM EVERY TWO
YEARS, WHEREAS THE NHIS VARIES
FROM 30 TO 80,000 ADULTS FOR
EVERY YEAR.
AND I'M NOT GOING TO GO THROUGH
ALL THESE ISSUES HERE, BUT THE
NATIONAL CENTER FOR HEALTH
STATISTICS HAS ALREADY LINKED
THIS DATA TO THE NATIONAL TETHEH
INDEX.
PEOPLE USE THIS TO LOOK AT
MORTALITY USING THE BASELINE
DATA FROM THE SURVEYS AS TO
COLLECT THE RISK FACTORS.
IF YOU LOOP ALL THE NHISs, YOU
HAVE ABOUT 1.5 MILLION PEOPLE,
AND THEY'RE U.S. REPRESENTATIVE
SAMPLE.
AND OF THAT, 1.5 MILLION, IT'S
320,000 RACE/ETHNIC MINORITIES
THERE.
NHANES, AGAIN MUCH SMALLER BUT
THEY HAD THIS EXAMINATION
INFORMATION THAT'S VERY
EXPENSIVE AND VERY UNIQUE, AND
IT'S U.S. REPRESENTATIVE AGAIN,
AND IT GIVES YOU OVER THOSE
YEARS 1999 ON ABOUT 60,000
PEOPLE WITH ABOUT 35,000 BECAUSE
OF THE OVERSAMPLING OF THE
RACE/ETHNIC MINORITIES.
SO AS I INDICATE THERE, NHIS HAS
ALREADY LINKED THIS DATA TO
VARIOUS DATA SOURCES.
THIS IS THE NHIS YEARS AND THIS
TELLS YOU FOR THE NATIONAL DEATH
INDEX HOW FAR THE LINKAGE IS
GONE OUT TO MEDICARE DATA AND
MEDICAID AND OTHER DATA
INCLUDING HUD DATA.
SO HOW MANY CANCERS WOULD YOU
EXPECT, AND SO THIS IS FROM THE
NHIS UP TO, I THINK 1988 HERE, I
CAN'T REMEMBER EXACTLY WHERE WE
DID THIS NOW, BUT IT WAS -- WE
WOULD GET ABOUT 106, 107,000
CASES FOR ALL SITES, 89,000
BEING WHITES AND ALMOST 18,000
AMONG NON-WHITE, AND THESE WOULD
BE THE DIFFERENT NUMBERS
ANTICIPATED THAT IF WE DID THE
LINKAGE BASICALLY TODAY, WE
WOULD HAVE ABOUT THIS OR A
LITTLE BIT MORE BY NOW, OKAY?
SO THE LINKAGE METHODOLOGY,
THERE'S ALL THESE ALGORITHMS FOR
HASHING AND TOKENIZATION USING
VARIOUS FREE AND COMMERCIAL
SOFTWARE TO PRESERVE
CONFIDENTIALITY.
THAT'S BEEN THE HANGUP.
THE NATIONAL CENTER FOR HEALTH
STATISTICS IS NOT GOING TO
DIVULGE OR PROVIDE DATA ANYWAY
THAT PEOPLE CAN MISUSE IT AND
IDENTIFY PEOPLE.
THAT'S PART OF THE HANGUP.
THE OTHER PART IS WHERE THE DATA
WOULD ACTUALLY BE USED, AND YOU
KNOW, WERE SOMEBODY SITTING AT A
UNIVERSITY, WHERE CAN THEY
ANALYZE THIS DATA?
DO THEY HAVE TO -- THEY HAVE TO
GO TO A RESEARCH DATA CENTER,
WHICH THERE ARE ABOUT 35, 37
CENTERS AROUND THE COUNTRY WHERE
NCHS HAS AN AGREEMENT WITH THE
CENSUS BUREAU TO ACTUALLY
ANALYZE THE DATA.
BUT THAT'S INCONVENIENT, SO
RIGHT NOW THERE'S WORK UNDERWAY
TO DEVELOP A VIRTUAL DATA
REPOSITORY, AND THAT MEANS THAT
SOMEONE CAN SIT AT THE DESK
THAT,SEND THEIR PROGRAMS IN ANDE
WILL BE SOME SORT OF FIREWALL
THAT THEY CAN'T DOWNLOAD UNTIL
NCHS HAS INSPECTED, SO THIS WILL
MAKE IT A LOT MORE EASY.
WE WANTED TO IMPLEMENT THIS
THING, WE WANTED TO START OFF
WITH TWO CANCER REGISTRIES OR
MORE, JUST TO DO A PILOT WHO ARE
WILLING TO SHARE THEIR PII AND
SO FORTH.
THAT WAY WE CAN ACTUALLY
DETERMINE ACCURACY OF THE
LINKAGE AND WE HAD SOME
DISCUSSIONS WITH TEXAS AN AND
LOUANDLOUISIANA AND WE WANTED TK
AT -- SEE THE ACCURACY OF THIS
EFFORT AND ALSO THE WILLINGNESS
OF THE REGISTRIES ACROSS THE
BOARD TO SEE IF WE COULD GET
ABOUT -- AT LEAST 75% COVERAGE
OF THE U.S. POPULATION.
THAT'S WHAT WE WERE PLANNING TO
DO IN PHASE ONE.
IN PHASE TWO, WE WANTED TO
EXPAND THIS ACROSS ALL THE
REGISTRIES AND IN PHASE THREE
HOPEFULLY GET EVERYBODY IN AT
SOME POINT.
SO THERE ARE A LOT OF POTENTIAL
RESEARCH QUESTIONS THAT CAN BE
ADDRESSED WITH THIS DATA IF IT
COMES ABOUT.
I'D HAVE TO SAY, I'VE BEEN --
WE'VE BEEN TALKING ABOUT THIS
SINCE 2015, AND WE'RE IN 2023
NOW AND NOTHING'S HAPPENED, BUT
WE HAD SOME GOOD CONVERSATIONS
THIS PAST WEEK, AND I THINK
THERE'S A REAL POSSIBILITY.
AND THIS DATA WILL BE MADE
PUBLICLY AVAILABLE, LIKE IT'S
NOT JUST FOR NCI.
THIS IS FOR ANYBODY, ANY
RESEARCHER AS FAR AS I CAN
DETERMINE IN THE UNITED STATES
AT LEAST AND MAYBE BEYOND THAT,
I DIDN DON'T KNOW HOW THAT WOULD
WORK.
BUT THESE ARE TYPES OF QUESTIONS
THAT YOU COULD TRY TO ADDRESS
BECAUSE QUESTIONS ABOUT HOW
THINGS ARE CHANGING OVER TIME,
THESE SURVEYS REPRESENT
POPULATIONS OVER TIME BECAUSE
THEY'RE DONE EVERY YEAR LIKE
NHIS, NHANES EVERY OTHER YEAR --
EVERY TWO YEARS.
SO THIS IS A RARITY.
I MEAN, TALKING ABOUT A COHORT,
LIKE I SAY, IT'S STAGNANT, YOU
CAN'T -- THEY DON'T REPRESENT
ANYTHING TO START WITH USUALLY,
AND THEN WHATEVER THEY
REPRESENT, THEY'VE ONLY BEEN
TAKING THAT AT ONE POINT IN TIME
AND THEN THAT'S IT.
I MEAN, YOU KNOW, WHATEVER THEY
ARE LATER IN TIME.
SO THIS CAN BE VERY USEFUL FOR
BOTH DISPARITY RESEARCH AND JUST
GENERAL CANCER RESEARCH.
ACROSS ALL GROUPS.
SO I THINK I'LL PRETTY MUCH STOP
THERE, JUST WANT TO SAY SOME OF
THE PEOPLE THAT I WORK WITH,
ANIL CHATURVEDI WAS SUPPOSED TO
GIVE THIS TALK, NOT ME, ANYWAY,
SO I GOT STUCK WITH IT, BUT ALSO
CONSTANZA HAS BEEN INVOLVED WITH
THIS, AND FROM THE METHODS SIDE,
THESE ARE THE STATISTICIANS ON
THE PAPERS I TALKED ABOUT, AND
THE OTHERS ARE SENIOR PEOPLE.
SO I'LL LEAVE IT AT THAT.
[APPLAUSE]
>>GOOD AFTERNOON, THANK YOU SO
MUCH.
I WAS JUST CURIOUS, YOU WERE
TALKING ABOUT THE COUNTERFACTUAL
MODEL AND THE THING THAT KEPT
COMING UP FOR ME AROUND
MEASURING DISPARITIES IS THAT
WHEN WE THINK ABOUT DISPARITIES,
THE TWO SORT OF MAIN ASSUMPTIONS
FOR THE COUNTERFACTUAL WHICH ARE
LININGLIKE THE TIME VARYING
EFFECT AND THEN THE
HETEROGENEOUS EFFECT OF THE
EXPOSURE ON SORT OF THE -- I
GUESS THE OUTCOME VARIES, RIGHT?
SO --
>>YOU MEAN BETWEEN THE GROUPS?
>>BETWEEN THE GROUPS, YEAH, SO
HOW DO WE ACCOUNT FOR THAT?
THOSE ARE THE TWO SORT OF --
>>SO YOU NOTICE THE PETERS
BELLSON IDEA, YOU FIT THE MODEL
TO JUST -- TO THE ADVANTAGE
GROUP, OKAY?
SO IT ACTUALLY -- YOU CAN SHOW
MATHEMATICALLY THAT IT'S GIVING
YOU -- IT'S LIKE YOU'RE MATCHING
TO THE -- BETWEEN THE MINORITY
OR DISADVANTAGED GROUP TO THE
ADVANTAGE GROUP, THERE'S NO
ASSUMPTION THAT THE RELATIONSHIP
HOLDS EXACTLY THE SAME.
IT MAY SEEM LIKE THAT, BUT I'M
ONLY FITTING A MODEL TO ONE
GROUP AND THAT'S WHY I'M GETTING
AROUND THAT.
IF THERE IS SOME INTERACTION,
AND IT'S NOT PROPERLY REFLECTED
IN THE WAY I JUST DESCRIBED,
THEN IT WILL BE -- IT WILL GET
PUSHED INTO THE UNEXPLAINED
COMPONENT, OKAY?
AND THEN YOU CAN EXPLORE THAT A
LITTLE BIT FURTHER.
THE WAHAKA BLINDER METHOD, AT
LEAST FOR LINEAR REGRESSION,
TRIES TO TAKE THAT INTO ACCOUNT
BY A THIRD ASPECT OF THEIR
PARTITIONING, AND THAT CAN BE
DONE HERE TOO, OKAY, SO IF YOU
WANT TO EXPLICITLY LOOK AT THAT,
YOU CAN DO SOMETHING LIKE THE
WAHAKA BLINDER.
>>THANK YOU SO MUCH FOR THE
TALK.
I HAD A QUESTION THAT IS SIMILAR
AND I WANTED TO LIFT SOMETHING
UP THAT WAS ASKED THIS MORNING
ABOUT INTERSECTIONALITY BECAUSE
IT DOESN'T SEEM LIKE THE PETERS
BELSON METHOD TAKES PEOPLE INTO
ACCOUNT WHO BELONG TO MORE THAN
ONE MARGINALIZED GROUP AND I'M
WONDER IF THE BIOSTATISTICS
BRANCH AND DCEG IS GOING TO TRY
TO TACKLE ANY OF THE ISSUES THAT
COME WITH STUDYING
INTERSECTIONALITY.
>>OKAY.
SO INTERSECTIONALITY IS A
TOUGH -- IS A VERY DIFFICULT
THING FOR STATISTICIANS TO DEAL
WITH, BECAUSE WHEN YOU START
TAKING THAT INTO ACCOUNT, THEN
THE NUMBERS GET -- IF YOU HAD TO
HAVE THE INFORMATION TO MAKE THE
IDENTIFICATION, NUMBERS GET
REALLY SMALL.
NOW, ONE OF THE ADVANTAGES OF
THE PETERS BELSON APPROACH IS
THAT SINCE YOU'RE FITTING THE
MODEL TO THE ADVANTAGED GROUP,
WHICH TENDS TO BE THE MAJORITY
GROUP BUT NOT ALWAYS, THEN YOU
DON'T NEED TO -- THE SMALL
NUMBERS IN THE GROUPS THAT
YOU'RE COMPARING, YOU'RE NOT
ESTIMATING PARAMETERS WITH THEM.
SO IT ACTUALLY -- IT'S HELPFUL
FOR THAT, BUT STILL, IF THE
NUMBERS GET SMALL, IT A
DIFFICULT THING.
SO WE HAVE TO -- STATISTICIANS
HAVE TO THINK OF OTHER THINGS TO
DO HERE.
SOME MAY BE IMPOSSIBLE, BUT
THERE MAY BE WAYS TO USE -- I
HAVEN'T THOUGHT ABOUT IT
EXTENSIVELY, BUT SOME SORT OF
LATE GROUPINGS THAT COULD BORROW
STRENGTH OR ACROSS GROUPS IN
SOME WAY SO THAT YOU CAN GET
SOME SORT OF ESTIMATE IF YOU
HAVE VARIABLES THAT CAN IDENTIFY
WHAT THOSE LATENT GROUPS ARE.
YOU KNOW, AND THAT HAS TO BE
LOOKED AT.
THAT'S WORK THAT WE'RE ALREADY
THINKING ABOUT, THAT'S RIGHT.
THAT'S IMPORTANT.
OKAY.
[APPLAUSE]
>> -- MORTALITY AMONG BLACK
INDIVIDUALS IN THE U.S.
WELCOME, DR. LAWRENCE.
[APPLAUSE]
>>HELLO.
THANK YOU FOR THE INTRODUCTION.
ONCE AGAIN MY NAME IS WAYNE
LAWRENCE, RESEARCH FELLOW AT THE
NATIONAL CANCER INSTITUTE.
I'M EXCITED TO SHARE A STUDY WE
COMPLETED THAT SOUGHT TO
DESCRIBE TRANS -- MORTALITY OVER
A TWO DECADE PERIOD.
BEFORE I BEGIN, PLEASE NOTE THE
OPINIONS ARE MY OWN AND MAY NOT
REPRESENT THE ENTITY OR NIH AS A
WHOLE.
CANCER IS THE SECOND LEEING
CAUSE OF MORTALITY IN THE UNITED
STATES, IT IS ESTIMATED IN 2020
THERE WERE OVER SIX HUP THOUSANS
DUE TO CANCER.
BLACK INDIVIDUALS CONTINUE TO
BEAR A HIGHER CANCER BURDEN
COMPARED WITH MOST OTHER RACIAL
AND ETHNIC GROUPS.
STUDIES THAT HAVE SHOWN THAT --
STUDIES HAVE SHOWN VARIOUS
ADVANCEMENT -- CANCER MORTALITY
WITHIN THE UNITED STATES.
HOWEVER, WITH THE INCREASED
ATTENTION TO -- WITH INCREASED
ATTENTION TO HEALTH EQUITY AS
WELL AS THE ADVANCES MADE IN
CANCER PREVENTION, DETECTION AND
TREATMENT AS WELL AS EXPANSION
OF HEALTHCARE UNDER THE PATIENT
PROTECTION AND AFFORDABLE CARE
ACT HAS CONTRIBUTED NATIONALLY
TO REDUCTION IN CANCER MORTALITY
AS A WHOLE.
HOWEVER, THE SPECIFIC IMPACTS OF
THESE FACTORS ON CANCER DEATH
RATES AMONG BLACK PLEN AND WOMEN
ESPECIALLY OVER TIME REMAINED
NOT WELL UNDERSTOOD AT THE TIME
OF THE STUDY.
SO A DETAILED UNDERSTANDING OF
CANCER MORTALITY RATES AMONG
BLACK MEN AND WOMEN IS ESSENTIAL
TO ASSESS RECENT PROGRESS WE
HAVE MADE AS WELL AS TO INFORM
INTERVENTIONS AT CANCER
DISPARITIES IN THE UNITED
STATES, PARTICULARLIAGE BLACK
INDIVIDUALS.
SO THEREFORE WE SOUGHT TO
DESCRIBE THE CURRENT TRENDS IN
CANCER MORTALITY AMONG BLACK MEN
AND WOMEN AGES 20 YEARS AND
OLDER IN THE UNITED STATES BY
AGE, BY SEX, BY LEADING CANCER
SITES AND AS WELL AS BY STATES.
AND THEN IN 2019, WE SOUGHT TO
COMPARE BLACK INDIVIDUALS TO ALL
OTHER RACIAL ETHNICALLY DEFINED
BROAD GROUPS, HOW DO WE LOOK AS
A NATION AT THAT ONE STANDPOINT,
TIME POINT.
SO BRIEFLY IN METHODS, THE
PRESENT STUDY FOCUSED ON OVERALL
CANCER MORTALITY AND LEADING
CAUSES OF CANCER DEATHS,
DEMOGRAPHIC CHARACTERISTICS,
REGRESSJOINPOINT REGRESSION PROS
USED, STANDARDIZED TO THE 2000
POPULATION PER 100,000
INDIVIDUALS.
SO OVER THE STUDY PERIOD FROM
1999 TO 2019 THERE WERE
1 MILLION CANCERS DEATHS WITHIN
THE UNITED STATES.
OVERALL, THERE WAS A 2%
REDUCTION OVER THIS TIME PERIOD
FROM 1999 TO 2019, WHERE CANCER
MORTALITY RATES DECLINE FASTER
AMONG BLACK MEN COMPARED WITH
BLACK WOMEN.
CANCER MORTALITY RATES ON BLACK
MEN ARE SHOWN IN THE RED LINE,
BLACK WOMEN SHOWN IN BLUE LINE.
AMONG THE YOUNGER AGE GROUPS,
CANCER MORTALITY RATES WERE
HIGHER -- SO WITH THE
CONTRIBUTIONS OF ADVANCEMENTS IN
CANCER CARE THROUGHOUT THE
CANCER CONTROL CONTINUUM, THAT
WAS ONE ASPECT THAT HELPED TO
REDUCE THE CANCER MORTALITY
RATES, HOWEVER, THERE WERE SHARP
DECLINE IN CIGARETTE SMOKING
FROM 24.3% ESTIMATED IN 1999 TO
APPROXIMATELY 14% IN 2019.
SO THEREFORE, IT CONTRIBUTED TO
A LOT OF THE CIGARETTE SMOKE
RELATED CANCER MORTALITIES.
BUT NOW WHEN FOCUSING
SPECIFICALLY ON BLACK MEN IN THE
UNITED STATES, FOR MOST OF THE
LEADING CANCER DEATHS, THERE WAS
A DECLINE OVERALL.
HOWEVER, INTERESTINGLY FOR LIVER
CANCER SHOWN BY THE GREEN LINE
IN BOX A, IT INCREASED FROM 1999
TO AROUND 2013 AND LATER
DECLINED FROM 2013 TO 2019.
HOWEVER, OVER THIS STUDY PERIOD,
THE LARGEST AND THE SHARPEST
DECLINE THAT WE OBSERVE IS FOR
LUNG CANCER, WHERE MORTALITY
RAILTS DECLINED ON AVERAGE ABOUT
3.8% FROM 1999 TO 2019.
SO OVERALL WE DID SEE A LARGE
DECLINE IN ADULT BLACK
POPULATION AS A WHOLE WHERE THE
GREATEST DECLINE WAS OBSERVED
FOR LUNG CANCER MORTALITY.
NOW IN FOCUSING SPECIFICALLY NOW
ON BLACK WOMEN, WE SEE A SIMILAR
TREND WHERE OVER TIME, THERE WAS
LARGELY A DECREASE FOR LEADING
CANCER MORTALITY SITES.
HOWEVER, FOR LIVER CANCER NOW,
LOOKING AT THE GREEN LINE IN BOX
B, AND UTERINE CANCER, THE GREEN
LINE SHOWN IN BOX C, WE SEE THAT
FOR THESE TWO CANCERS, THERE WAS
AN INCREASE OF ABOUT 1% AVERAGE
PER YEAR ANNUALLY FROM 1999 T
TO -- SO ULTIMATELY WE SEE A
DECLINE FOR MOST CANCER SITES --
ABOUT 1% ON AVERAGE PER YEAR.
NOW LET'S TURN AGAIN BACK TO
BLACK MEN.
WHEN STRATIFIED BY AGE GROUP, WE
SEE THAT FOR BLACK MEN CANCER
DEATHS DECLINED ACROSS ALL AGE
GROUPS AS A WHOLE FOR MOST
CANCER SITES WITH THE GREATEST
DECLINE FOR LUNG CANCER AMONG
THOSE 35 TO 49, 50 TO 64 AND
65 TO 79 YEARS OF AGE.
HOWEVER, IT'S HARD TO SEE HERE
BUT FOR PROSTATE CANCER, -- AM
THOSE AGES 65 TO 79 YEARS OF AGE
AND WE HAVE PROVE SIGHED THAT IN
2013, THIS MAY BE DUE TO THE
2012 U.S. PREVENTIVE TASK FORCE
RECOMMENDATION AGAINST SCREENING
AT THAT TIME, THOUGH IN 2018 THE
TASK FORCE RECOMMENDED FOR MEN
TO DISCUSS THIS WITH THEIR
PHYSICIAN AMONG THOSE AGES 50 TO
69 YEARS OF AGE -- BENEFITS AND
HARMS OF THE SCREENING.
WHEN WE LOOK AT BLACK MEN AGAIN,
AS SHOWN BY THE GREEN LINE, FOR
BLACK MEN AGES 50 TO 64, THEY
HAD A SHARP INCREASE IN LIVER
CANCER MORTALITY SHOWN BY THE
GREEN LINE FROM 1999 PLATEAUING
FROM 2009 TO 2014, AND A SHARP
DECLINE FROM 2014 TO 2019.
HOWEVER, WE SEE THAT FOR MEN
AGES 65 TO 79, THE BOTTOM LEFT
CORNER, THERE WAS A SHARP
INCREASE IN LIVER CANCER
MORTALITY AMONG THIS AGE GROUP
THAT THEY CONTINUE TO EXPERIENCE
TO THIS DAY TSH TO T -- TO THIS.
FOR BLACK WOMEN SPECIFICALLY
CANCER DEATH DECLINED ACROSS
MOST OF THE AGE GROUPS FOR
CANCER GROUPS, WITH LUNG CANCER
WITH THE SHARPEST DECLINE FROM
35 TO 79 YEARS OF AGE.
HOWEVER, WE OBSERVED A STEADY
INCREASE IN UTERINE CANCER
MORTALITY AMONG THOSE 35 TO 49,
50 TO 64 AND 65 TO 79, WHERE THE
GREATEST ANNUAL INCREASE
OBSERVED IN THE 50 TO 64 YEAR
AGE GROUP WHERE IT INCREASED AT
ABOUT 2% ON AVERAGE PER YEAR FOR
RELATED CANCER MORTALITY.
POTENTIAL EXPLANATION BASED ON
PRIOR STUDIES SUGGEST AFTER
ACCOUNTING FOR HYSTERECTOMY WHEN
TALKING ABOUT -- AMONG BLACK
WOMEN THIS WAS SUGGESTED TO BE
ATTRIBUTED -- LARGELY GRIFFIN BY
EXPOSURES TO CHRONIC STRESSORS,
FURTHER RESEARCH IN THIS AREA.
NOW THE SIMILAR FINDINGS THAT WE
OBSERVED FOR LIVER CANCER WHICH
SHOWN BY THE PURPLE LINE WERE AT
INCREASED AMONG BLACK WOMEN
AMONG THOSE 65 TO 79 YEARS OF
AGE.
THE INCREASING NUMBER OF CANCER
MORTALITY NOW AMONG BLACK MEN
AND WOMEN IN THE OLDER AGE GROUP
PARTICULARLY MAY BE ATTRIBUTED
TO HAVING THE LARGEST PREVALENCE
OF HEPATITIS C INFECTION WITH
GREATER LIVER CANCER RISK.
ADDITIONALLY, THE ELEVATED
MORTALITY AMONG THIS AGE GROUP
MAY ALSO BE ATTRIBUTED TO HAVING
THE HIGHER PREVALENCE OF LIVER
CANCER RIS BE FACTORS, INCLUDING
OBESITY, METABOLIC DISORDERS,
MORE SPECIFICALLY DIABETES.
THE YOUNGER AGE GROUP FOR BLACK
MEN AND WOMEN COULD BE DUE TO
IMPROVED SCREENING FOR HEPATITIS
C VIRUS, HEPATITIS B VIRUS THAT
REDUCE HEPACELLULAR CARCINOMA,
AS WELL AS THEIR IMPROVEMENT IN
LIVER DYSFUNCTION.
SO OUR NEXT APPROACH WAS TO SEE
WHICH STATE IN THE UNITED STATES
OVERALL HAD THE FASTEST OR
SLOWEST DECLINE IN OVERALL
CANCER MORTALITY RATE
NATIONALLY.
ONE THING -- SO LOOK AT THE LEFT
SIDE IS BLACK MEN, RIGHT SIDE
BLACK WOMEN.
SO STATES WITH THE HIGHEST
PREVALENCE OF TOBACCO USE HAD
THE SLOWEST OVERALL DECLINE IN
CANCER MORTALITY.
SO AS AN EXAMPLE, IN 2015,
NEARLY 25% OF WEST VIRGINIA
POPULATION WERE CURRENT
CIGARETTE SMOKERS WHERE WE
OBSERVED THIS STATE HAD THE
SLOWEST ANNUAL DECLINE IN
OVERALL CANCER MORTALITY AMONG
BLACK MEN SHOWN TO THE LEFT AT
THE TOP.
SIMILARLY, THE MIDWEST HAS ONE
OF THE HIGHEST SMOKING
PREVALENCE AMONG BLACK
INDIVIDUALS IN THE UNITED
STATES, WHERE THE PREVALENCE IS
HIGHEST FOR BLACK WOMEN COMPARED
WITH MOST OTHER U.S. REGIONS.
HERE WE SEE A SLOW DECLINE WAS
OBSERVED AMONG BLACK WOMEN THAT
RESIDED IN WISCONSIN.
SO OVERALL WE SEE THERE WAS AN
OVERALL DECLINE IN CANCER
MORTALITY OVERALL AND FOR MOST
CANCER SITES.
BUT NOW EVERYONE IS SEEN IN
2019W DOE2019 -- I HAVE BLACK MD
WOMEN HAD A HIGHER CANCER
MORTALITY RATE OVERALL COMPARED
WITH MOST OTHER BROADLY TE DEFID
RACIAL AND ETHNIC GROUPS.
PANCREATIC CANCER, COLORECTAL
CANCER, MYELOMA, COMPARED WITH
OTHER RACIAL AND ETHNIC GROUPS
SHOWN ON THIS CHART, BUT MOST
SHOCKINGLY, WHEN LOOKING AT
PROSTATE CANCER MORE
SPECIFICALLY, WE SEE THAT BLACK
MEN HI A RATE FIVE TIMES HIGHER
THAN THEIR COUNTERPART IN THE
UNITED STATES.
WHEN LOOKING AT BLACK WOMEN,
THEY HAD A HIGHER BREAST CANCER
MORTALITY RATE, HIGHER UTERINE
CANCER, HIGHER CERVICAL CANCER,
COMPARED WITH ALL OTHER RACIAL
AND ETHNIC GROUPS IN THE UNITED
STATES, COMPARED TO ALL OTHER
RACIAL AND ETHNIC -- FOR THESE
LEADING CANCERS.
MOST SHOCKINGLY WE SEE THAT
BLACK WOMEN HAD A BREAST CANCER
MORTALITY RATE THAT WAS NEARLY
TWO TIMES HIGHER THAN THEIR
ASIAN AND PACIFIC ISLANDER
COUNTERPARTS.
SO DESPITE THE NATIONAL PROGRESS
THAT I'VE SHOWED HERE IN
REDUCING CANCER MORTALITY, BLACK
INDIVIDUALS HAD A CONSIDERABLY
HIGHER CANCER MORTALITY RATES
COMPARED WITH -- MOST TROUBLING,
WELL ESTABLISHED MEANS EARLY
DETECTION AND IMPROVED LONG TERM
SUR VAIFL STILL REMAIN MARKEDLY
HIGHER IN BLACK INDIVIDUALS IN
2019.
SO HIGHER BREAST CANCER, HIGHER
PROSTATE, COLORECTAL, AMONG
BLACK INDIVIDUALS WERE SUGGESTED
TO BE A RESULT OF HIGH
INCIDENCE, MORE AGGRESSIVE
CANCER CHARACTERISTICS, BUT ALSO
LOWER RECEIPT OF -- BLACK
PATIENTS ARE MORE LIKELY TO
EXPERIENCE POOR
PATIENT-PHYSICIAN INTERACTION,
MORE LIKELY TO EXPERIENCE LONGER
REFERRAL TIMES MORE LIKELY TO
EXPERIENCE DELAYS IN TREATMENT,
MORE LIKELY TO REPORT MEDICAL
MISTRUST, UNDERUSE OF TREATMENT
BR NOW SPECIFICALLY OF THE
HEALTHCARE SYSTEM.
THESE ARE ALL FACTORS THAT HAVE
CONTRIBUTED TO A
DISPROPORTIONATE BURDEN OF
CANCER MORTALITY AMONG BLACK
INDIVIDUALS AND THIS HAS BEEN
WELL DOCUMENTED FOR DECADES NOW.
I MUST ALSO NOTE THAT BLACK
INDIVIDUALS ARE MORE LIKELY TO
RESIDE IN NEIGHBORHOODS WITH
POOR ACCESSIBILITY TO SEE A
PHYSICIAN, PARTICULARLY A CANCER
SPECIALIST, TO SEE A PHYSICIAN
THAT REPORTS LOWER ACCESS TO
CLINICAL RESOURCES.
AND -- ASSOCIATED WITH ELEVATED
CANCER RISKS.
THEREFORE, CONTINUING TO SOLELY
FOCUS ON THINGS SUCH AS
BEHAVIORAL AND BIOLOGICAL IS
INSUFFICIENT BUT UNDERSTANDING
THE CONTRIBUTIONS OF SOCIAL
INEQUITIES AMONG BLACK
INDIVIDUALS WITHIN UNITED
STATES.
ADDRESSING INEQUALITIES THAT
CONTRIBUTE TO RACIAL DISPARITIES
IN CANCER MORTALITY REQUIRES
POLICIES THAT SEEK TO RESOLVE
THE ADVERSE SOCIOENVIRONMENTAL
CONDITIONS THAT CONTRIBUTE TO
RACIAL INEQUITYING AND CANCER
MORTALITY THROUGHOUT THE ENTIRE
CANCER CARE CONTINUUM.
SO IN SUMMARY, WE OBSERVED THERE
WAS A STEADY DECLINE IN OVERALL
CANCER MORTALITY RATES AMONG
BLACK INDIVIDUALS WHICH DOES
LIKELY REFLECT ADVANCES IN
CANCER TREATMENT AND EARLY
DETECTION AS WELL AS POPULATION
CHANGES AND EXPOSURES TO CERTAIN
CANCER CARCINOGENS.
HOWEVER, DESPITE THE DECREASE WE
SEE AMONG BLACK INDIVIDUALS,
BLACK MEN AND WOMEN CONTINUE TO
HAVE THE HIGHEST MORTALITY
RATES, HIGHLIGHTING THE NEED TO
TEST THE PERVASIVENESS THAT
PERSISTS TO THIS DAY.
ELIMINATING RACIAL AND ETHNIC
DISPARITIES IN CANCER MORTALITY
WILL REQUIRE EQUITABLE ACCESS TO
CANCER PREVENTION, EARLY
DIAGNOSIS AND TIMELINE AND HIGH
QUALITY TREATMENT THROUGHOUT THE
ENTIRE CANCER CARE CONTROL
CONTINUUM.
SO TO SEE MORE ON THESE
FINDINGS, WE PUBLISHED THEM
ALMOST A YEAR AGO FROM JAMA
ONCOLOGY THAT GOES INTO FURTHER
DETAILS.
THANK YOU FOR YOUR TIME AND I
CAN ANSWER ANY QUESTIONS THAT
YOU HAVE.
[APPLAUSE]
>>THANK YOU, DR. LAWRENCE.
WE WELCOME QUESTIONS FROM THE
AUDIENCE.
>>HI, DR. LAWRENCE.
GREAT PRESENTATION.
I KNOW THE CANCER PLAN CAME OUT
EARLIER THIS WEEK THAT SAID THEY
WANT TO REDUCE CANCER MORTALITY
BY 50% IN THE NEXT 25 YEARS.
WHERE DO YOU SEE WE CAN HAVE THE
MOST IMPACT FOR OUR BLACK
COMMUNITIES AND INDIVIDUALS TH
THAT -- TARGETED INTERVENTION OR
WHAT SHOULD WE BE DOING?
LOVE TO HEAR YOUR THOUGHTS.
>>ONE THING IS ACCESS TO CARE.
ACCESS TO CARE IS ONE AREA WHEN
IT COME TO ACCESS TO CANCER
SCREENING OR HAVING INSURANCE TO
COVER CANCER COVERAGE.
AT THE END OF THE DAY, EVERY
RACIAL DISPARITY WE SEE IT IS
ALL I ASSUME PREVENTABLE DEATHS
THAT COULD HAVE BEEN STOPPED SO
THAT CARRIES ONE ASPECT OF IT.
AS WELL AS MORE LIKELY TO HAVE
QUALITY MEDICAL CARE TOO.
SO FROM PREVENTION TO TIMELY
TREATMENT OR DIAGNOSIS, ALL THE
WAY TO SURVIVORSHIP, THESE ARE
ALL FACTORS.
I CAN'T JUST NAME ONE, BUT IT
THROUGHOUT THE ENTIRE CONTINUUM,
IT ALL NEEDS TO BE ADDRESSED,
BUT THE FIRST INSTANCE IS GIVING
PEOPLE ACCESS TO MEDICAL CARE.
>>BUILDING ON THAT CONCEPT OF
ACCESS TO CARE, GREAT DATA, AND
I LOVE THE FACT THAT YOU ENDED
WITH A POLICY RECOMMENDATION AND
PRIORITIZING --
>>POLICY -- AND THE MULTILEVEL
INTERVENTION PIECE.
>>BUT ONE PIECE IN ACCESS TO
CARE, I'M CURIOUS TO KNOW, WHAT
DO YOU THINK THE ROLE OF
COMMUNITY CLINICS CAN PLAY IN
THIS?
I LOVE THE FACT THAT YOU
MENTIONED EARLY DETECTION, BUT
I'M HOPING WE CAN THINK ABOUT
HOW YOUR PAPER AND OTHER
FINDINGS LIKE THAT CAN INFORM
WHERE WE GO FOR INFORMING
CLINICAL TRIALS, COMMUNITY
CLINICS, FEDERALLY QUALIFIED
HEALTH CENTERS, NON-ACADEMIC
MEDICAL CENTERS BECAUSE THIS
ACCESS TO CARE IS ONE THING, BUT
ALSO WHERE WE CONDUCT THE
RESEARCH AND WHERE WE ENSURE
THAT PEOPLE GET EARLY DETECTION
WITH INNOVATIVE TREATMENT IS
ALSO ANOTHER THING.
SO I'D LOVE TO HEAR HOW YOU
THINK YOUR PAPER --
>>SO THIS IS AN AREA I'M -- ONE
ASPECT I DO LIKE IS THE MOBILE
CLINIC.
SO THE MOBILE CLINIC THAT ALLOWS
FOR DETECTION SUCH AS
MILLIMETERGRAPHY, SO YOU BRING
IN THE RESOURCES TO THE
COMMUNITY, TO THE POPULATION
THAT'S UNDERSERVED, STRUCTURALLY
MARGINALIZED, SO I THINK THAT'S
ONE AREA THAT IS IMPORTANT,
BRINGING THE CARE TO THOSE THAT
HAVE DR -- REDUCING BARRIERS TO
CARE SO THAT'S ONE ASPECT OF IT.
WHEN IT COMES TO RESEARCH.
WE NEED RESEARCH THAT DOES NOT
JUST HIGHLIGHT THE FINDINGS THAT
I DID TODAY BUT ALSO HOW CAN WE
TRANSLATE THIS TO COMMUNITY
INTERVENTIONS TOO.
SO FOR INSTANCE WE SAW THAT
CERTAIN AREAS SUCH AS WEST
VIRGINIA HAS A
DISPROPORTIONATELY HIGH LEVEL OF
CANCER BURDEN.
HOW DO WE TRANSLATE THAT TO
INTERVENTIONS THAT WILL HELP
PROVIDE THESE COMMUNITIES WITH
THESE RESOURCES.
SO YES, BRING THE CARE TO THE
INDIVIDUALS, BUT ALSO -- YOU
MUST ALSO TAKE ON OUR RESEARCH
FROM WHAT WE FOUND IN THE
COMPUTER AND PUBLISHING JOURNAL
TO ACTUALLY IMPACT INDIVIDUALS
AS WELL TOO.
>>THANK YOU.
>>GREAT QUESTION.
>>TH THANK YOU.
THAT WAS REALLY AMAZING OR
GREAT.
I HAD JUST A QUESTION OR A NOWT.
THOUGHT.
I KNOW YOU HAD MENTIONED SOME
SPECIFIC POLICIES.
I WAS WONDERING IF YOU HAD
THOUGHT ABOUT DOING KIND OF AN
INTERRUPTED TIME SERIES MODEL,
REALLY INCORPORATING THE
INVESTMENT THAT HRSA HAS DONE,
REFERENCED IN EARLIER
CONVERSATIONS AROUND COMMUNITY
CLINIC, POLICY LEVEL AND
SYSTEMIC LEVEL INTERVENTIONS, A
LOT OF WHAT HRSA DOES AND
SUPPORTS AND FACILITATES COULD
BE CONSIDERED PARTICULARLY
BENEFICIAL TO BLACK PEOPLE IN
THE UNITED STATES, AS WELL AS
OTHER MARGINALIZED GROUPS, SO I
WAS JUST CURIOUS ABOUT ANY WORK
YOU'VE THOUGHT ABOUT IN TERMS OF
COMMUNITY LEVEL OR SYSTEM LEVEL
INVESTMENTS THAT HAVE -- THAT
COULD BE INCORPORATED INTO
MODELS RELATIVELY EASILY.
>>SO IF I UNDERSTAND YOUR
QUESTION, SO TAKEN INTO ACCOUNT
AT DIFFERENT TIME POINTS,
VARIOUS INTERVENTIONS THAT WERE
FUNDED OR IMPLEMENTED AND HOW
THAT MAY HAVE ON CANCER
OUTCOMES.
>>YEAH.
>>I THINK THAT'S A GREAT IDEA.
I'LL DEFINITELY HAPPY TO DISCUSS
MORE.
>>I WOULD BE HAPPY TO TALK
OFFLINE.
>>THANK YOU.
>>THANK YOU, DR. LAWRENCE.
[APPLAUSE]
OUR THIRD PRESENTER IS DR
DR. JACQUELINE VO, THE TITLE OF
HER PRESENTATION IS BREAST
CANCER SURVIVORSHIP, INEQUITIES
AMONG ASIAN AMERICANS, NATIVE
HAWAIIANS AND OTHER PACIFIC
ISLANDER WOMEN.
WELCOME, DR. VO.
>>THANK YOU.
GOOD AFTERNOON AND THANK YOU FOR
THE OPPORTUNITY TO BE HERE AND
PRESENT MY RESEARCH AS PART OF
THE NCI INTRAMURAL RESEARCH
PROGRAM.
FOR BACKGROUND I AM A NURSE
SCIENTIST AND CLINICAL
EPIDEMIOLOGIST, ASSISTANT
CLINICAL INVESTIGATOR IN THE
RADIATION EPIDEMIOLOGY BRANCH
HERE IN THE CANCER OF
EPIDEMIOLOGY AND GENETICS AT
NCI.
DELIGHTED TO SHARE ONE OF MY
AREAS SIEF ENS I'M DEEPLY
PASSIONATE ABOUT, BREAST CANCER
SURVIVORSHIP INEQUITIES AMONG
ASIAN AMERICAN, NATIVE HAWAIIAN
AND OTHER PACIFIC ISLANDER
WOMEN.
IN 1997, ABOUT 26 YEARS AGO, THE
OFFICE OF MANAGEMENT AND BUDGET
DEVELOPED REVISIONS TO THE
STANDARDS FOR THE CLASSIFICATION
OF FEDERAL DATA ON RACE AND
ETHNICITY.
SO ESSENTIALLY THIS WAS USED FOR
CENSUS STANDARDS AND THE NEW
CATEGORIES SEPARATE ASIAN AND
NATIVE HAWAIIAN AND OTHER
PACIFIC ISLANDER INTO TWO
DISTINCT RACIAL CATEGORIES.
UNFORTUNATELY DATA COLLECTION
HAS NOT CONSISTENTLY SEPARATED
ASIANS FROM NATIVE HAWAIIAN AND
OTHER PACIFIC ISLANDER
INDIVIDUALS FOR EACH STATE, AND
FOR EXAMPLE, ON DEATH
CERTIFICATE DATA.
AND IMPORTANTLY, MANY PEOPLE DO
NOT KNOW THAT ACTUALLY PACIFIC
ISLANDER INDIVIDUALS DO NOT COME
FROM ASIAN COUNTRIES, THEY
ACTUALLY REPRESENT DIFFERENT
ISLANDS IN OCEANA.
SO HERE ARE TWO MAPS.
ON THE LEFT WE HAVE THE MAP OF
ASIA USING THE UNITED NATION
SUBDIVISIONS WHICH GROUP ASIAN
COUNTRIES BY GEOGRAPHIC REGION
SO NOTABLY ASIAN AMERICANS
SPECIFICALLY THAT HAVE EMBRAIT
GRATED FROM THE U.S. COME -- ON
RIGHT WE HAVE THE MAP OF THE
PACIFIC ISLANDERS PART OF OCEANA
AND NOT ASIA WHICH ARE GROUPED
INTO REGIONS KNOWN AS
MICRONESIA, MELANESIA AND
POLYNESIA.
HAWAII IS CONSIDERED AS PART OF
POLYNESIA.
IN THE U.S., ASIAN AMERICANS ARE
VERY HETEROGENEOUS GROUP
REPRESENTING OVER 30 COUNTRIES
IN OVER 100 DIFFERENT LANGUAGES.
85% OF ASIAN AMERICANS ARE FROM
OR HAVE ORIGINS FROM SIX
COUNTRIES IN PARTICULAR, JAPAN,
KOREA, VIETNAM, THE PHILIPPINES,
CHINA AND INDIA.
ASIAN AMERICANS HAVE THE
GREATEST INCOME INEQUALITY HERE
IN THE U.S., WHICH IS
DRASTICALLY INCREASED SINCE
1970.
SPECIFICALLY, THE TOP 10% OF
WEALTHIEST ASIAN AMERICANS EARN
OVER 10 TIMES THE INCOME OF THE
ASIAN AMERICANS IN THE BOTTOM
10%.
THIS IS GREATER THAN ALL OTHER
RACIAL ETHNIC GROUPS IN THE U.S.
THERE IS ALSO VARIATION IN
EDUCATION LEVEL AS WELL, SO AS
YOU CAN SEE WITH USING THE
AGGREGATE GROUP, 54% OF ASIAN
AMERICANS HAVE A
BACHELOR'S DEGREE.
BUT IF YOU DISAGGREGATE USING
THE THIRD FIGURE, THIS RANGES
FROM 75% OF INDIANS WHO HAVE A
BACHELOR'S DEGREE TO 15% OF --
32% OF VIETNAMESE INDIVIDUALS IN
THE U.S.
THESE WITHIN GROUP DIFFERENCES
ARE ALSO PRESENT WITHIN NATIVE
HAWAIIAN AND OTHER PACIFIC
ISLANDER INDIVIDUALS HERE IN THE
U.S. AS WELL.
WHO REPRESENT OVER 100 NATIONS
ACROSS 20,000 ISLANDS.
THERE ARE VARYING LEVELS OF
ENGLISH PROFICIENCY AMONG NATIVE
HAWAIIAN AND OTHER PACIFIC
ISLANDERs, AND FIGURES TWO AND
THREE SHOW AN IMPORTANT
DISTINCTION BETWEEN NATIVE
HAWAIIAN AND OTHER PACIFIC
ISLANDERs FROM ASIAN
INDIVIDUALS.
SO FIGURE 2 SHOWS LOWER
EDUCATIONAL ATTAINMENT FOR
NATIVE HAWAIIAN AND OTHER
PACIFIC ISLANDERS COMPARED TO
ASIANS, AND FIGURE 3 SHOWS A
GREATER POVERTY LEVEL FOR NATIVE
HAWAIIAN AND OTHER PACIFIC
ISLANDER INDIVIDUALS COMPARED TO
ASIANS HERE IN THE U.S.
SO I'VE CHARACTERIZED
DIFFERENCES IN ASIAN AMERICANS
FROM NATIVE HAWAIIAN AND THESE
AGGREGATE MEASURES WHEN YOU
GROUP THEM TOGETHER CAN BE
MISLEADING, AFFECT POLICIES,
UNCONSCIOUS BIASES AND PUBLIC
HEALTH IMPLICATIONS.
SO I'M REALLY EXCITED TO SHARE
SOME OF THIS WORK.
I'M REALLY GRATEFUL ACTUALLY TO
SHARE THIS SPACE TO CHARACTERIZE
THE DIFFERENCE IN CANCER
INCIDENCE BY DISAGGREGATED
INDIVIDUALS.
SO I'M GOING TO BRIEFLY SHOW
THREE STUDIES CONDUCTED HERE AT
DCEG, NCI.
THIS SHOWS A CURRENTLY STUDY
RECENTLY UNDER REVIEW, THAT
OVERALL NATIVE HAWAIIAN AND
PACIFIC ISLANDER WOMEN HAVE A
GREATER CANCER MORTALITY
COMPARED TO ASIAN INDIVIDUALS,
WHICH WAS CONSISTENT FOR SEVERAL
CANCER SITES.
BREAST CANCER, PARTICULAR
INTEREST OF MIND, BUT YOU CAN
ALSO SEE NATIVE HAWAIIAN AND
PACIFIC ISLANDERs HAVE A
TWOFOLD RISK COMPARED TO
NON-ASIAN WOMEN.
THIS STUDY USES NATIONWIDE DEATH
CERTIFICATE MEASURE FROM 2018 TO
2020.
YOU MAY BE WONDERING WHY 2018
WHEN OMB SET STANDARDS BACK IN
1997.
SO LIKE ME I QUESTIONED THIS AND
LEARNED IT WAS NOT UNTIL 2018
WHEN EVERY STATE IN THE SU NATIN
SEPARATED DATA ON DEATH
CERTIFICATES.
IT'S VERY CLEAR WE HAVE A LONG
WAY TO GO.
THIS IS ANOTHER STUDY THAT WAS
RECENTLY PUBLISHED LED BY MY
DEAR COLLEAGUE JAMIE SHIELS ALSO
IN D.C. WHICH SHOWS DATA
AGGRAVATION MASKS CANCER
INCIDENCE.
ON THE LEFT, THE RATE WAS
7.6 PER HUNDRED THOUSAND
INDIVIDUALS WHEN YOU GROUP THEM
TOGETHER BUT THE DISAGGREGATED
DATA SHOWS AN INCIDENT RATE
OF -- AND 10.1 FOR SOUTHEAST
ASIAN WOMEN.
ON THE RIGHT THIS IS REALLY
SIMILAR FOR MEN WITH
OROPHARYNGEAL SQUAMOUS CELL
CARCINOMA WITH 1.8 WHEREAS
DISAGGREGATED DATA SHOWS A RATE
FOR 4.2 PER 100,000 INDIVIDUALS
FOR NATIVE HAWAIIAN OR PACIFIC
ISLANDER MEN.
SO SPECIFICALLY FOR BREAST
CANCER INCIDENCE WHICH IS A
PARTICULAR INTEREST OF MINE THE
GREY LINE HERE SHOWS ASIAN
INDIVIDUALS, WHEN EXAMINED AS AN
AGGREGATE, HAD NO CHANGE IN
CANCER INCIDENCE OVER TIME BUT
WHEN YOU LOOK AT THE
DISAGGREGATED DATA IT SHOWS
BREAST CANCER INCIDENCE ARE
INCREASING AMONG FILIPINO,
CHINESE, JAPANESE AND KOREAN
WOMEN AS HIGHLIGHTED BY THE
STARS.
SO I'M GOING TO SWITCH GEARS
BRIEFLY OVER TO BREAST CANCER
SURVIVORSHIP AND TIE ALL OF THIS
TOGETHER.
SO CURRENTLY THERE ARE OVER
3.8 MILLION BREAST CANCER
SURVIVORS LIVING HERE IN THE
U.S., WHICH HAS A FIVE-YEAR
SURVIVAL RATE OF 91%.
ADVANCES IN TREATMENT AND
SCREENING HAVE CONTRIBUTED TO
LONGER SURVIVAL, BUT MANY BREAST
CANCER SURVIVORS ARE AT
INCREASED RISK FOR DEVELOPING
AND DYING OF CARDIOVASCULAR
DISEASE DUE TO SHARED RISK
FACTORS IN CARDIOTOXIC CANCER
TREATMENT.
BY WAY OF BACKGROUND, I WAS A
CARDIAC ICU NURSE AND I'M VERY
PASSIONATE ABOUT REDUCING THE
IMPACT OF LONG TERM
CARDIOVASCULAR DISEASE AMONG
CANCER SURVIVORS.
SO THE FIGURE ON THE LEFT SHOWS
SEVERAL TREATMENTS THAT ARE
ASSOCIATED WITH INCREASED RISK
OF CARDIOVASCULAR DISEASE
INCLUDING CHEMOTHERAPY SUCH AS
ANTHROCYCLINES, CHEST
RADIOTHERAPY AND HORMONE
THERAPY.
AS A RESULT OF INCREASING
KNOWLEDGE AND AWARENESS OF
CARDIOTOXICOLOGY, SCREENING FOR
CARDIAC DYSFUNCTION FOR SPECIFIC
CANCER TREATMENTS.
BUT WITH LIMITED RESOURCES AND
ACCESS TO GUIDELINE CONCORDANT
HEALTHCARE, THIS MAY RESULT IN
DISPARITIES IN CARDIOVASCULAR
DISEASE MORTALITY GIVEN THE
HIGHLY SPECIALIZED
CARDIOONCOLOGY FIELD.
AND WHEN I REFERRED TO HIGHLY
SPECIALIZED, MANY OF YOU COME
FROM DIFFERENT AREAS ACROSS THE
U.S. AND NOT EVERY SINGLE
INSTITUTION HAS A CARDIOONCOLOGY
CLINIC WHICH IS CARDIOLOGISTS
WHO ACTUALLY HAVE EXPERIENCE AND
KNOWLEDGE IN CANCER TREATMENTS.
SO I RECENTLY PUBLISHED TWO --
BY SOCIOECONOMIC STATUS AND BY
RACIAL AND ETHNIC DISPARITIES.
I'M GOING TO HIGHLIGHT A FEW
FINDINGS FROM THE LATTER STUDY.
SO THIS IS QUITE LITERALLY HOT
OFF THE PRESS.
THIS ARTICLE WAS PUBLISHED TWO
WEEKS AGO.
MY TEAM AND I USE STANDARDIZED
MORTALITY RATIOS WHICH ARE
CALCULATED AS THE OBSERVED HEART
DISEASE DEATHS AMONG BREAST
CANCER SURVIVORS BY THE GENERAL
POPULATION.
SO FINDING DEMONSTRATED THAT WE
OBSERVED ELEVATED HEART DISEASE
MORTALITY AMONG BLACK AND LATINA
BREAST CANCER SURVIVORS OVERALL
AND BY INITIAL TREATMENT
RECEIPT, AS WELL AS ASIAN
AMERICAN, NATIVE HAWAIIAN AND
PACIFIC ISLANDER WOMEN TREATED
WITH CHEMOTHERAPY OR
RADIOTHERAPY.
AN IMPORTANT CAVEAT HERE, SO THE
DATA USED WERE FROM 2000 TO 2018
FROM SEER AND, THEREFORE, WE
REPORTED THE AGGREGATED ASIAN
AMERICAN, NATIVE HAWAIIAN AND
PACIFIC ISLANDER DATA SINCE WE
COULD NOT DISAGGREGATE THE
EXPECTED RATES IN THE
CERTIFICATE DATA PRIOR TO 2018.
SO THIS FIGURE HERE SHOWS THE
HEART DISEASE SMRs BY RAIS AND
ETHNICITY OVERALL AND STRIKE STD
BY TREATMENT IN CANCER STAGE.
TREATMENT AND STAGE.
AND I'M GOING TO HIGHLIGHT ONLY
JUST THE FINDINGS FOR THE ASIAN
AMERICAN AND NATIVE HAWAIIAN AND
PACIFIC ISLANDER WOMEN AND I'LL
EXPLAIN WHY.
SPECIFICALLY WE OBSERVED
SIGNIFICANTLY HIGHER HEART
DISEASE MORTALITY FOR ASIAN
AMERICAN, NATIVE HAWAIIAN AND
PACIFIC ISLANDER BREAST CANCER
SURVIVORS WHEN TREATED WITH
CHEMOTHERAPY AND RADIOTHERAPY,
BUT WE COMPARED THEM TO THE
ASIAN AMERICAN AND NATIVE
HAWAIIAN, PACIFIC ISLANDER WOMEN
IN THE GENERAL POPULATION
MATCHED ON AGE AND CALENDAR
YEAR.
SO A FEW THINGS TO NOTE ABOUT
THIS STUDY.
WE REVEALED SOME DISPARITIES IN
HEART DISEASE MORTALITY AMONG
ASIAN AMERICAN, NATIVE HAWAIIAN
AND PACIFIC ISLANDER BREAST
CANCER SURVIVORS WHEN COMPARED
TO THEIR RACIAL AND ETHNIC MATCH
GENERAL POPULATION AS THE
REFERENCE GROUP USING THE SMR
APPROACH.
THIS LIKELY WOULD HAVE BEEN
MASKED IF WE COMPARED THEM TO
THE TRADITIONAL METHOD OF USING
NON-HISPANIC WHITE AS THE
INDIVIDUAL REFERENCE GROUP.
ONE OF THE DISTINCT -- IN THE
GENERAL POPULATION, SO IT'S
UNKNOWN IF OBSERVED ELEVATED
RISK WERE ATTRIBUTED TO ASIANS
OR NATIVE HAWAIIAN AND PACIFIC
ISLANDER WOMEN, OR WHICH
ETHNOGEOGRAPHIC REGION.
SO ETHNOGEOGRAPHY IS DEFINED BY
THE DICTIONARY AS THE GEOGRAPHIC
DISTRIBUTION OF RACES OR PEOPLE
IN THEIR RELATION TO THE
ENVIRONMENTS OF WHICH THEY LIVE.
SO THIS CAN REFER TO ASIANS,
PACIFIC ISLANDERs, ALSO MORE
GRANULAR IN TERMS OF SOUTHEAST
ASIAN, EAST ASIAN AND SOUTH
ASIAN DESCENT.
SO I WANTED TO FOLLOW UP ON
THESE FINDINGS TO UNDERSTAND
WHAT ARE DRIVING THESE ELEVATED
RISK AMONG BREAST CANCER
SURVIVORS.
I'M VERY GRATEFUL TO MY CURRENT
MENTEE, RAISE YOUR HAND,
CAROLINE, WHO WA IS A CURRENT
STUDENT AT GEORGE WASHINGTON WHO
FACILITATED THIS ANALYSIS OVER
THE LAST YEAR.
SO AGAIN USING SEER 17 REGISTRY
DATA, WE INCLUDED OVER 56,000
WOMEN WHO IDENTIFIED AS ASIAN
AMERICAN, NATIVE HAWAIIAN OR
OTHER PACIFIC ISLANDER WOMEN
DIAGNOSED WITH BREAST CANCER
BETWEEN THE AGES OF 18 TO 84,
BETWEEN 2000 AND 2018 AND
SURVIVED AT LEAST ONE YEAR AFTER
THEIR INITIAL CANCER DIAGNOSIS.
FOR OUR EXPOSURE, WE GROUPED THE
WOMEN BY ETHNOGEOGRAPHIC REGION
SO EAST ASIAN, WHICH INCLUDED
CHINESE, JAPANESE AND KOREAN
WOMEN, SOUTH ASIAN INCLUDING
ASIAN, INDIAN, PAKISTANI,
SOUTHEAST ASIAN INCLUDING
FILIPINO, VE VIETNAMESE, LAOTIA,
HMONG, THAI, NATIVE HAWAIIAN AND
OTHER PACIFIC ISLANDER INCLUDING
POLYNESIAN, MICRO KNEE SHAN,
MELANIE SHAN AND OTHER
INDIVIDUALS.
WE ALSO WANTED TO LOOK
SPECIFICALLY AT HEART DISEASE
AND CEREBROVASCULAR DISEASE
MORTALITY, TYPES OF
CARDIOVASCULAR DISEASE.
FOR THE ANALYSIS FOLLOW-UP TIME
STARTED ONE YEAR AFTER BREAST
CANCER DIAGNOSIS AND CONTINUED
INTO THE FIRST OF FOLLOWING
EVENTS.
CARDIOVASCULAR DISEASE DEATH,
OTHER CAUSE OF DEATH, LOSS TO
FOLLOW-UP OR END OF STUDY WHICH
WAS DECEMBER 31ST, 2019.
FOR ANALYSIS WE USED THREE
DIFFERENT APPROACHES.
FIRST WE REPORTED CUMULATIVE
MORTALITY ESTIMATES ACCOUNTING
FOR COMPETING EVENTS.
NEXT WE USED ADJUSTED HAZARD
RATIOS USING COX PROPORTIONAL
HAZARD MODELS TO ESTIMATE THE
RISK OF SOUTH ASIAN, SOUTHEAST
ASIAN, COMPARED TO EAST ASIAN
WOMEN.
WE USED THIS EAST ASIAN AS THE
REFERENCE GROUP AS IT WAS THE
LARGEST SAMPLE.
ALSO I WANTED TO FOLLOW UP ON
THOSE FINDINGS I PRESENTED
EARLIER ON THE PRIOR PUBLISHED
ARTICLE WHERE WE LOOKED AT
STANDARDIZED MORTALITY RATIOS,
WITH THE CAVEAT THAT WE COMPARED
EAST ASIAN, SOUTH ASIAN,
SOUTHEAST ASIAN AND NHPI WOMEN
TO THE AGGREGATE OF ASIAN
AMERICAN AND NHPI WOMEN IN THE
GENERAL POPULATION.
SO SPECIFIC ANALYSIS RELATED TO
FOLLOW-UP THAT WE OBSERVED.
THIS TABLE SHOWS THE DESCRIPTIVE
CHARACTERISTICS OF THE STUDY
POPULATION STRATIFIED BY
ETHNOGEOGRAPHIC REGION.
SO OF NOTE, SOUTHEAST ASIAN
WOMEN WERE THE YOUNGEST AT
BREAST CANCER DIAGNOSIS AND FOR
STAGE, SOUTH ASIAN AND NHPI --
AGGRESSIVE STAGE BREAST CANCER
AND IT WAS REALLY INTERESTING
THAT NATIVE HAWAIIAN AND PACIFIC
ISLANDER WOMEN HAD THE GREATEST
PROPORTION OF ER POSITIVE BREAST
CANCER, WHICH IS THE LESS
AGGRESSIVE OF THE TWO COMPARED
TO ER NEGATIVE.
IN TERMS OF CANCER TREATMENT,
SOUTH ASIAN, SOUTHEAST ASIAN AND
NHPI WOMEN HAD GREATER
PROPORTIONS OF RECEIVING
CHEMOTHERAPY, THESE TWO
TREATMENT CATEGORIES HIGHLIGHTED
HERE IN THE RED BOX, COMPARED TO
EAST ASIAN WOMEN JUST
DESCRIPTIVELY.
SO FOR RESULTS I'M GOING TO
FIRST SHOW YOU THE CUMULATIVE
MORTALITY ESTIMATES, STRATIFIED
BY AGE AND ETHNOGEOGRAPHIC
REGION.
WE CHOS 70 YEARS AS THE CUTOFF
BASED ON THE DISTRIBUTION OF
EVENTS WITHIN THE STUDY
POPULATION AND OUR ESTIMATES
ACCOUNTED FOR COMPETING RISK SO
ANY OTHER NON-CARDIOVASCULAR
DISEASE DEATHS.
SO ON THE LEFT WERE WOMEN
DIAGNOSED PRIOR TO AGE 70.
NHPI WOMEN HAD THE GREATEST
10-YEAR CUMULATIVE MORTALITY,
APPROXIMATELY 1 IN 40 WOMEN
DYING OF CARDIOVASCULAR DISEASE,
FOLLO.ON THE RIGHT FOR WOMEN DID
AFTER AGE 70, WE FOUND REALLY
SIMILAR PATTERNS WITH THE GRE
GREATEST CUMULATIVE MORTALITY
FOR NHPI WOMEN, APPROXIMATELY
1 IN 7 DYING OF CARDIOVASCULAR
DISEASE.
SO THIS FIGURE SHOWS THE
ADJUSTED HAZARD RATIOS OF
CARDIOVASCULAR DISEASE MORTALITY
BY ETHNOGEOGRAPHIC WOMEN WITH
EAST ASIAN AS THE REFERENCE
GROUP.
OVERALL WE OBSERVED SIGNIFICANT
HETEROGENEITY IN ETHNOGEOGRAPHIC
REGION WHICH PERSISTED BY AGE,
TREATMENT -- AND ERC STATUS.
SO COMPARED TO EAST ASIAN, SOUTH
ASIAN, SOUTHEAST ASIAN, NHPI
WOMEN HAD A SIGNIFICANTLY HIGHER
CARDIOVASCULAR DISEASE
MORTALITY.
THESE PATTERNS WERE MOSTLY
SIMILAR BY AGE AT BREAST CANCER
DIAGNOSIS AS WELL WITH ELEVATED
RISK FOR SOUTHEAST ASIAN, NHPI
WOMEN DIAGNOSED BEFORE AGE 70,
AND THEN AFTER AGE 70, WE
OBSERVED ELEVATED RISK FOR SOUTH
ASIAN, SOUTHEAST ASIAN, NHPI
WOMEN COMPARED TO EAST ASIAN
WOMEN.
BY INITIAL TREATMENT RECEIPT,
NHPI WOMEN HAD ELEVATED
CARDIOVASCULAR DISEASE MORTALITY
ACROSS ALL TYPES, SO SURGERY,
CHEMOTHERAPY, KEEM THEIR WITH
RADIOTHERAPY AND RADIOTHERAPY,
COMPARED TO EAST ASIAN WOMEN.
AND THEN SPECIFICALLY FOR WOMEN
TREATED WITH RADIOTHERAPY ONLY,
WE OBSERVED ELEVATED RISK FOR
SOUTH ASIAN, SOUTHEAST ASIAN,
NHPI WOMEN.
AND BY ER STATUS COMPARED TO
EAST ASIAN WOMEN, SOUTH ASIAN,
SOUTHEAST ASIAN AND NHPI WOMEN
DIAGNOSED WITH ER POSITIVE
BREAST CANCER HAD A
SIGNIFICANTLY HIGHER
CARDIOVASCULAR DISEASE
MORTALITY.
I DID WANT TO HIGHLIGHT THAT WE
OBSERVED REALLY SIMILAR PATTERNS
BUT ATTENUATED RESULTS FOR HEART
DISEASE MORTALITY, WHICH WERE
FURTHER ATTENUATED FOR
CEREBROVASCULAR DISEASE
MORTALITY.
SO THIS SLIDE HERE IS ME TRYING
TO UNDERSTAND THE RESULTS OF THE
PRIOR STUDY.
SO ON THE TOP IS A SNIPPET OF
THE FIGURE WHERE WE FOUND
ELEVATED HEART DISEASE SMRs
FOR THE WOMEN TOGETHER.
ON THE BOTTOM IS THE PRESENT
STUDY, WHERE WE DISAGGREGATED BY
ETHNOGEOGRAPHIC REGION BUT WE
STILL HAD TO USE THE SAME
REFERENCE GROUP.
SO OVERALL, SOUTH ASIAN NHPI
WOMEN HAD ELEVATED HEART DISEASE
MORTALITY COMPARED TO THE
AGGREGATE ASIAN AMERICAN NATIVE
HAWAIIAN AND PACIFIC ISLANDER
GENERAL POPULATION AND THE
NATIVE HAWAIIAN AND PACIFIC
ISLANDER WOMEN ALSO HAD ELEVATED
RISK ACROSS ALL TREATMENT GROUPS
BUT SPECIFICALLY WHEN WE
COMPARED THE FINDINGS THAT WE
FOUND EARLIER, WHERE ASIAN
AMERICAN, NATIVE HAWAIIAN AND
PACIFIC ISLANDER AS AN AGGREGATE
WERE TREATED WITH CHEMOTHERAPY
PLUS RADIOTHERAPY, HAD ELEVATED
RISK, WE FOUND IT WAS LIKELY
ATTRIBUTED TO SOUTHEAST ASIAN
AND NHPI WOMEN TO THAT ELEVATED
HEART DISEASE MORTALITY.
IMPORTANTLY, BECAUSE WE COULD
NOT DISAGGREGATE THE
DENOMINATOR, WE ALSO COULDN'T
ACCOUNT FOR THE DIFFERENCES BY
ETHNOGEOGRAPHIC REGION IN THE
GENERAL POPULATION.
SO IN TERMS OF THE MAIN
TAKEAWAYS, WE FOUND SIGNIFICANT
DIFFERENCES IN CARDIOVASCULAR
DISEASE MORTALITY AMONG ASIAN
AMERICAN, NATIVE HAWAIIAN AND
PACIFIC ISLANDER WREAS CANCER
SURVIVORS -- ATTENUATED FOR
HEART DISEASE AND
CEREBROVASCULAR DISEASE
MORTALITY.
IMPORTANTLY, WE REALLY RECOGNIZE
THAT ASIAN AMERICANS ARE NOT THE
SAME AS NATIVE HAWAIIAN AND
OTHER PACIFIC ISLANDER
INDIVIDUALS.
WHEN YOU AGGREGATE THE TWO
GROUPS, THEY MASK DISPARITIES.
AND THE GREATEST CARDIOVASCULAR
DISEASE BURDEN WERE OBSERVED
AMONG NATIVE HAWAIIAN AND
PACIFIC ISLANDER WOMEN WITH 2 TO
6% GREATER MORTALITY COMPARED TO
EAST ASIAN WOMEN AMONG NATIVE
HAWAIIAN AND PACIFIC ISLANDER
INDIVIDUALS.
SOUTH ASIAN AND SOUTHEAST ASIAN
ALSO HAD ELEVATED CARDIOVASCULAR
DISEASE MORTALITY COMPARED TO
EAST ASIAN WOMEN AS WELL, AND
THESE DESCRIPTIVE STUDIES USING
LARGE NATIONAL STUDIES ARE
USEFUL TO UNDERSTAND THESE
PATTERNS BUT WE REALLY NEED
ADDITIONAL STUDIES WITH THE
DISAGO DATED DATA AVAILABLE SO
WE CAN UNDERSTAND WHAT'S DRIVING
THESE RISK FACTORS.
SO I WANTED TO BRIEFLY SHOW THE
FRAMEWORK, IT'S BEEN REALLY
GREAT TO LEARN TODAY AND
YESTERDAY ABOUT THE DIFFERENT
UPSTREAM AND DOWNSTREAM FRAME
WORKS THAT DRIVE OTHER STUDIES
DURING THIS CONFERENCE.
THIS FRAMEWORK DESCRIBES HOW
HEALTH INEQUITIES -- FROM SOCIAL
AND STRUCTURAL DETERMINANTS OF
HEALTH, SYSTEMIC INEQUITIES, AND
CLINICAL INEQUITIES.
BUT AS I MENTIONED WE REALLY
NEED MORE DATA THAT PULLS THESE
PIECES TOGETHER SO WE CAN
ATTEMPT TO UNDERSTAND WHAT
DRIVES THESE HEALTH DISPARITIES.
SO LASTLY I JUST REALLY WANTED
TO HIGHLIGHT HOW I'M TRYING TO
DO MY DUE DILIGENCE IN
INCREASING THE RACIAL DIVERSITY
IN CANCER COHORTS, BUT
SPECIFICALLY DIVERSITY --
DIVERSIFYING BREAST CANCER
SURVIVOR COHORTS AMONG ASIAN
AMERICAN AND NATIVE HAWAIIAN AND
PACIFIC ISLANDER INDIVIDUALS.
I'M THE COPI OF THE KAISER
PERMANENTE BREAST CANCER
SURVIVORS COHORT.
THIS IS A LONG TERM EFFORT FROM
DR. GIERACH AND DR. GONZALEZ WHO
RECENTLY LEFT THE NCI AND
RETURNED TO THE UK AND WE
RECENTLY RETRIEVED DATA FROM
FOUR KAISER PERMANENTE SITES FOR
OVERARCHING STUDY AIM.
WITH THE RISK OF SECOND CANCERS,
CARDIOVASCULAR DISEASE RISK AND
MORTALITY AMONG BREAST CANCER
SURVIVORS.
WITH MY COLLEAGUE DR. CO DI
RAYMOND -- OVER THIS LAST YEAR
WHICH INCLUDES A PATIENT
POPULATION OF OVER 50%
NON-HISPANIC BLACK WOMEN WHICH
IS FUNDED BY THE DCEG FELLOWS
HEALTH DISPARITIES BOARD.
BUT THIS IS THE MAP I ENVISION
FOR THE NEAR FUTURE, WHICH ADDS
KAISER PERMANENTE HAWAII.
HAWAII IS HOME TO ONE OF THE
LARGEST U.S. POPULATIONS OF
ASIAN AMERICANS, NATIVE
HAWAIIANS AND OTHER PACIFIC
ISLANDERS.
SPECIFICALLY IT INCLUDES
APPROXIMATELY 40% ASIAN
AMERICANS AND APPROXIMATELY 20%
NATIVE HAWAIIAN AND OTHER
PACIFIC ISLANDER BREAST CANCER
SURVIVORS.
KAISER HAWAII IS A DCEG CONNECT
FOR CANCER PREVENTION STUDY SITE
AND HAS ESTABLISHED PARTNERSHIPS
WITH DR. STACY HONDA AND HER KP
HAWAII TEAM SO REALLY LOOKING
FORWARD TO JOINING EFFORTS WITH
KAISER HAWAII IN THE NEAR
FUTURE.
SO I JUST WANTED TO BRIEFLY END
WITH THE ADDITION OF KAISER
HAWAII, WE'LL BE INCREASING OUR
ASIAN PROPORTION OF OUR COHORT
FROM 4% TO 11.5%, AND FOR THE
PACIFIC ISLANDER PROPORTION FROM
LESS THAN 1% TO 6%.
AND WE'RE HOPING TO ABSTRACT
DATA FROM THESE MEDICAL RECORDS
AND CANCER REGISTRY TO SET THE
STAGE TO STUDY RACIAL INEQUITIES
AMONG BREAST CANCER SURVIVORS
WITHIN DCEG.
AND SO I'M GOING TO END ON THESE
LAST RESEARCH SUGGESTIONS.
FIRST IS TO COLLECT DATA ON
DETAILED RACE.
SO THAT'S ASIAN AND PACIFIC
ISLANDERS, AND AS WELL AS
ETHNICITY.
SO VIETNAMESE, CHINESE,
HAWAIIAN, SAMOAN, TO REALLY
ALLOW US TO HAVE MEANINGFUL
GROUPINGS.
AS I MENTIONED EARLIER -- IT
TAKES A REALLY, REALLY LONG TIME
TO BE ABLE TO HAVE DATA CATCH UP
TO RESEARCH.
SO I REALLY ENCOURAGE IF YOU ARE
COLLECTING DATA, TO PLEASE ALLOW
FOR THE COLLECTION OF DETAILED
RACE.
WHEN POSSIBLE, DO NOT ANALYZE
ASIAN AMERICAN AND NATIVE
HAWAIIAN AND PACIFIC ISLANDER
INDIVIDUALS TOGETHER.
ESPECIALLY WHEN THE
DISAGGREGATED DATA ARE
AVAILABLE.
NATIVE HAWAIIANS ARE A MUCH
SPALLER GROUP, THEY WERE THE
SMALLEST GROUP IN OUR SAMPLE
HERE, SO WHEN YOU'RE ANALYZING
THESE ASIAN AND PACIFIC ISLANDER
INDIVIDUALS TOGETHER, YOU'RE
REALLY JUST REPORTING THE RISK
OF ASIANS AND MASKING THE BURDEN
AMONG NATIVE HAWAIIAN AND
PACIFIC ISLANDER INDIVIDUALS.
CONSIDER USING REFERENCE GROUPS
OTHER THAN NON-HISPANIC WHITE AS
APPROPRIATE.
AND THEN ACTIVELY ENGAGE
COMMUNITY PARTNERS TO BETTER
UNDERSTAND THE REAL LIFE
EXPERIENCES AND CULTURAL AND
HISTORICAL CONTEXT, SPECIFICALLY
THE RECENT RISE OF ANTI-ASIAN
HIT CRIMES SINCE THE COVID-19
PANDEMIC AS WELL AS SE XENOPHOB.
I WANTED TO GIVE A BRIEF EXAMPLE
OF HOW I'VE DONE THIS IN TERMS
EVER ENGAGING COMMUNITY PARTNERS
I WAS REALLY INTERESTED IN
UNDERSTANDING ABOUT NATIVE
HAWAIIAN AND OTHER PACIFIC
ISLANDER INDIVIDUALS SO I
DIDN'T -- I DON'T WORK WITH
ANYONE WHO'S NATIVE HAWAIIAN OR
OTHER PACIFIC ISLANDER, AND SO I
SENT A TWITTER DM TO A COLLEAGUE
OF MINE WHOSE NAME IS COCOA, THE
REST IS HISTORY.
SO I REALLY ENCOURAGE YOU REACH
OUT TO PEOPLE, THEY'RE OFTEN
REALLY WILLING TO TEACH, EDUCATE
AND HELP MAKE CHANGE IN THE
RESEARCH COMMUNITY.
AND SO WITH THAT, I JUST WANT TO
ACKNOWLEDGE MY MENTORS, MY
COLLEAGUES, THE DCEG FELLOWS
CANCER HEALTH DISPARITIES
INTEREST GROUP AS WELL AS MY
KAESER PERMANENTE COLLABORATORS
AND MY MENTEES.
[APPLAUSE]
>>THANK YOU SO MUCH, DR. VO.
VERY INFORMATIVE PRESENTATION.
DO WE HAVE ANY QUESTIONS FROM
THE AUDIENCE HERE?
>>HI.
VERY NICE PRESENTATION.
SO MAYBE YOU TOUCHED UPON THIS
BEFORE AND MAYBE OTHER SPEAKERS
HAVE ALSO TALKED ABOUT THIS, BUT
WHEN YOU TALK ABOUT AGGRAVATE
GATING, WHAT HAPPENS TO THE
POWER FOR THE DIFFERENT GROUPS?
SO IF UR OOO TALKING ABOUT
RECRUITING PEOPLE FOR NEW
STUDIES, DO YOU HAVE TO TRY TO
RECRUIT MORE INDIVIDUALS FROM
THE SEPARATE AGGREGATED GROUPS,
HOW DO YOU GO ABOUT DEALING WITH
THAT?
>>THAT'S A REALLY GREAT
QUESTION AND SOMETHING THAT
WE'RE CONSTANTLY DEALING WITH
AND I THINK THAT'S WHY IT'S VERY
EASY FOR INDIVIDUALS OR
RESEARCHERS TO GROUP ASIANS AND
PACIFIC ISLANDERS TOGETHER
BECAUSE OF STATISTICAL POWER.
BUT I THINK ONE OF THE
COMMENTS -- ONE OF THE POINTS MY
TAKE-HOME MESSAGES WAS WHEN THE
DATA IS NOT AVAILABLE -- OR WHEN
IT'S POSSIBLE TO SEPARATE THE
TWO GROUPS, SO FOR EXAMPLE, IF
YOUR POPULATION IS LARGELY ASIAN
AND YOU HAVE, SAY, TWO OR THREE
CASES WHO ARE REPRESENTING
NATIVE HAWAIIAN OR PACIFIC
ISLANDERS, CONSIDER DROPPING
THOSE CASES -- SO WE'RE NOT
CHANGING THE MESSAGE IN THE
STORY LINES OF NATIVE HAWAIIAN
AND PACIFIC ISLANDERS JUST BY
LUMPING THEM TOGETHER WITH
ASIANS, IF THAT MAKES SENSE.
BUT IT'S DEFINITELY SOMETHING TO
CONSIDER AND WE'RE DEFINITELY
TRYING TO DO OUR BEST TO
OVERSAMPLE MORE OF
UNDERREPRESENTED POPULATIONS,
BUT YEAH, IT'S DEFINITELY GOING
TO BE SOMETHING TO CONSIDER, BUT
WE'RE REALLY LUCKY TO WORK WITH
KAISER HAWAII, WHICH HAS A LARGE
PROPORTION OF ASIAN, PACIFIC
ISLANDER INDIVIDUALS.
>>HI.
CAROLINE THOMPSON, UNC.
GREAT TALK.
I LOVE YOUR ENTHUSIASM AND
YOU'RE DOING AMAZING WORK.
SO THIS DISAGGREGATION THING IS
BEING PERPETUATED OR THE LACK OF
DISAGGREGATION IS BEING
PERPETUATED IN THE MEDICAL
JOURNALS.
I SPENT A DECENT AMOUNT OF TIME
WHEN I REVIEW PAPERS THAT HAVING
A GATED ASIAN TRYING TO PUSH
BACK AND PUSH BACK, ESPECIALLY
WHEN THE SAMPLE SIZES ARE THERE.
AND SO YOU KNOW, I THINK ONE
THING IS THAT IF YOU ARE
REVIEWING PAPERS, THE SAMPLE
SIZES ARE THERE, PUSH BACK.
>>YES.
THANK YOU.
>>THERE IS A PROBLEM OUT THERE
STILL, AND IT'S EITHER -- I
DON'T KNOW -- YOU KNOW,
SOMETIMES I SUSPECT IT'S A
POWER, LIKE OH, WELL, YOU KNOW,
IF WE DISAGGREGATE, THEN OUR
RESULTS WON'T LOOK AT EXCITING
AND WE WON'T GET INTO THIS, YOU
KNOW, HIGH IMPACT MEDICAL
JOURNAL, BUT IT'S JUST -- IT
KEEPS GETTING PERPETUATED, SO
IT'S A COMMENT BUT ALSO A
QUESTION, LIKE HOW CAN WE MAKE
THIS HAPPEN FASTER IN THESE
MEDICAL JOURNALS, PERHAPS THE
ONES THAT AREN'T NECESSARILY AS
TUNED IN TO THE RESEARCH THAT
WE'RE ALL CONDUCTING IN THIS
ROOM.
>>I THINK IT'S A REALLY GREAT
POINT.
I THINK YOU'VE SET A REALLY
ALMOST SIMPLE EXAMPLE THAT
EVERYONE CAN DO.
WE'RE ALL REVIEWING ARTICLES AND
IF YOU ARE SEEING A POPULATION
OF ASIAN AND PACIFIC ISLANDERS
THAT ARE GROUPED TOGETHER, PUSH
BACK.
ASK WHY NOT.
IT'S POSSIBLE.
>>AND CAN I ASK A FOLLOW-UP?
>>YEAH, ABSOLUTELY.
>>SO JUST CURIOUS, LIKE IT
FEELS LIKE THERE'S -- SO WE GO
FROM LIKE AGGREGATED -- ALL THE
WAY DOWN TO LIKE SIX OR MORE
GROUPS, SEVEN, PLUS NHPI.
DO YOU THINK THAT THIS -- I
HADN'T REALLY SEEN MUCH OF THIS
ETHNOGEOGRAPHIC, IS THIS A GOOD
MIDDLE GROUND?
AS A REVIEWER, COULD I SAY
CONSIDER DOING THIS?
>>IT'S SOMETHING THAT I'M
DEFINITELY STRUGGLING WITH,
BECAUSE FIRST AND FOREMOST,
ASIANS AND PACIFIC ISLANDERS
NEED TO BE SEPARATED.
THAT'S LIKE BATTLE NUMBER ONE,
MAJOR ISSUE THAT'S STILL
ONGOING, LIKE YOU SAID, IN
CLINICAL JOURNALS.
BUT YES, I DO THINK --
PERSONALLY, I'M VIETNAMESE
AMERICAN.
NEITHER OF MY PARENTS WENT TO
HIGH SCHOOL SO I'M A FIRST
GENERATION HIGH SCHOOL, COLLEGE
AND DOCTORAL DEGREE STUDENT, AND
THAT'S SOMETHING THAT'S ALWAYS
PUSHED BACK ON ME.
THE THINGS I'VE EXPERIENCED
GROWING UP IN TERMS OF HEARING
WELL, YOU'RE ASIAN, YOU MUST BE
SMART, LIKE, THAT'S JUST -- YOU
KNOW, BECAUSE ALL ASIANS ARE
SMART.
I WAS LIKE, WHO AROUND ME IS
SMART?
WHERE IS THIS COMING FROM?
SO I ALWAYS WANT -- LIKE THAT IS
THE GOAL, RIGHT, IS TO BE ABLE
TO SEPARATE, BUT IN A VERY
MEANINGFUL WAY.
SO I THINK AS I REALLY LIKE THE
IDEA OF THE ETHNOGEOGRAPHIC
REGIONS, BECAUSE A LOT OF THE
INDIVIDUALS FROM SOUTHEAST ASIA
ARE IMMIGRATING TO THE U.S. IN
REALLY SIMILAR PATTERNS, WHICH
INFLUENCES WHEN THEY COME.
LIKE THERE'S A REASON WHY
INDIAN -- ASIAN INDIANS IN THE
U.S. HAVE A HIGHER EDUCATIONAL
ATTAINMENT.
THEY'RE COMING OVER AS COLLEGE
STUDENTS.
IT'S VERY DIFFERENT THAN MY
PARENTS WHO EMIGRATED FROM WAR
TORN VIETNAM AS REFUGEES IN THE
80s.
SO THOSE THINGS INFLUENCE HOW I
WAS RAISED, HOW I'M GOING TO,
YOU KNOW, ATTAIN COLLEGE ONE
DAY, LIKE ALL OF THAT INFLUENCED
MY PERSONAL HISTORY AND MY
FAMILY, AND SO YES, I DO,
LIKE -- ETHNOGEOGRAPHIC REGIONS
ARE A REALLY GREAT WAY TO BE
ABLE, BUT THERE'S STILL NUANCES
WITHIN EACH REGION AS WELL.
ONE OF THE PAPERS I MENTIONED
EARLIER FOR CERVICAL CANCER
INCIDENCE RATES, THE HIGHEST
RISK THAT WE OBSERVED FOR
CERVICAL CANCER WAS AMONG
VIETNAMESE AND LAOTIAN WOMEN,
WHICH ARE PART OF SOUTHEAST
ASIA, BUT WE ACTUALLY OBSERVED
LOWER RISK FOR FILIPINO
INDIVIDUALS, ALSO CONSIDERED
SOUTHEAST ASIA.
SO THERE'S DEFINITELY CHALLENGES
BOTH WAYS, BUT YES, I DO
ENCOURAGE TRYING TO FIGURE IT
OUT, BUT I'M HOPING TO CONTINUE
TO GROW THIS AREA IN MY RESEARCH
CAREER.
SO THANK YOU SO MUCH.
>>THANK YOU FOR THE
PRESENTATION.
MY NAME IS LORENA FROM
CEDARS-SINAI CANCER.
ACTUALLY MY COMMENT IS RELATED
TO LIVED EXPERIENCE THAT YOU
JUST SHARED.
AND I WOULD ACTUALLY ENCOURAGE
FOR YOU TO ADD THAT TO THE LIST
OF RESEARCH SUGGESTIONS
BECAUSE -- SO THANK YOU FOR
PRESENTING DISAGGREGATED DATA ON
THE SOCIODEMOGRAPHICS IN THE
START OF YOUR PRESENTATION, BUT
I WOULD ALSO CAUTION USING THESE
GENERIC TRADITIONAL MEASURES OF
SES AS WE JUST SAID, RIGHT?
SO FOR EXAMPLE, SOME GROUPS --
LIKE YOU'RE SAYING, SOME GROUPS
MAY HAVE HIGH EDUCATION BUT
WE'RE NOT CAPTURING OR
COLLECTING REPORTING DATA THAT
THEIR DEGREES WERE PROBABLY
RECEIVED OVERSEAS, AND -- SOME
MAY HAVE HIGH INCOME.
IT LOOKS GOOD.
AND THEY'RE SUPPORTING
MULTIGENERATIONAL HOUSEHOLDS,
AND LOTS OF IMMIGRANTS, AND ALSO
SUPPORTING OTHER FAMILY MEMBERS
OVERSEAS.
SO IT'S JUST -- ENCOURAGE TO
YOU -- LIKE ALSO THE RESEARCH
SUGGESTIONS, ADD THOSE NUANCES
THERE, YOU SEEM TO BE VERY AWARE
OF THEM, BUT ALSO THERE'S
MOVEMENT WITH THE DATA
DISAGGREGATION AND PART OF THE
ASIAN AMERICAN NHPI DATA
DISAGGREGATION WORK GROUP IN
L.A. COUNTY, AND WE ARE PART OF
THE LISTENING SESSIONS, OMB IS
HOLDING LISTENING SESSIONS
BECAUSE THERE'S A PUSH TO UPDATE
THE MINIMUM STANDARDS FOR DATA
REPORTING ON RACE/ETHNICITY, SO
THERE'S MOVEMENT GOING ON.
SO I ENCOURAGE EVERYONE TO
GOOGLE IT, TO SUPPORT IT, TO
JOIN THE LISTENING SESSIONS IF
THEY CAN.
>>THANK YOU.
>>THANK YOU, DR. VO.
[APPLAUSE]
JUST TO CONCLUDE THIS SESSION, I
THINK THAT TO YOUR POINT, THE
STATISTICAL METHODS TO BE USED
TO STUDY DISPARITIES, THERE ARE
SOME THAT ARE AVAILABLE, SOME
THAT NEED TO BE DEVELOPED.
THE SECOND POINT, HOW TO CREATE
NEW RESOURCES.
WE HOPE THAT DCEG IN
COLLABORATION WITH OTHER
DIVISIONS AT NCI COULD REALLY
MATERIALIZE THE CREATION OF
THESE LARGE COHORT WITH THE
NATIONAL SURVEYS AND
DR. LAWRENCE AND DR. VO BROUGHT
ATTENTION TO DISAGGREGATION OF
DATA.
DR. LAWRENCE CLEARLY SHOWED THE
DISPARITIES ACROSS GEOGRAPHY IN
THE U.S. AND ABOUT
RACE/ETHNICITY, ALSO ABOUT --
ONE MISSING VARIABLE ALSO WE
NEED TO CONSIDER.
THANK YOU SO MUCH FOR YOUR
PARTICIPATION.
WE ARE GOING TO TRANSITION TO
SESSION NUMBER 14, DR. AMBS.
THANK YOU.
>>THANK YOU SO MUCH, CONSTANZA.
THANK YOU SO MUCH TO THE
SPEAKERS FOR THESE EXCITING
TALKS.
WE WILL CONTINUE TO DO SO.
SO WE WILL NOW START THE NEXT
SESSION, SESSION 14, WHICH WILL
HIGHLIGHT THE USE OF
TELEMEDICINE IN IMPROVING CANCER
CARE DELIVERY TO AMERICANS WHO
HAVE LIMITED ACCESS TO CANCER
CARE DELIVERY.
BECAUSE THEY LIVE IN RURAL AREAS
OR IN OTHERWISE UNDERSERVED
AREAS AFFECTING MINORITY
POPULATIONS.
WE HAVE TWO SPEAKERS.
THE FIRST SPEAKER WILL BE
DR. DEBRA FRIEDMAN.
SHE'S THE CHAIR OF PEDIATRIC
ONCOLOGY, ALSO HEADING THE
CANCER CONTROL PREVENTION
CONTROL PROGRAM AND DIRECTS A
CANCER SURVIVOR PROGRAM, AND SHE
HAS DEVELOPED AN INTEREST IN
TELEHEALTH TO REACH RURAL
COMMUNITIES IN NEED OF
COMPREHENSIVE CANCER CARE.
DR. FRIEDMAN, THANK YOU SO MUCH
FOR BEING HERE TODAY.
[APPLAUSE]
>>THANK YOU.
THANKS.
I'D LIKE TO THANK THE NCI FOR
THE OPPORTUNITY TO SPEAK AT THIS
REALLY WHAT HAS BEEN AN AMAZING
SYMPOSIUM.
SO I'M GOING TO TALK A LITTLE
BIT ABOUT TELEHEALTH IN AREAS OF
A LITTLE BIT ON CLINICAL
MEDICINE BUT MOSTLY IN AREAS OF
CANCER CONTROL AND PREVENTION,
AND I'M GOING TO FOCUS ON RURAL
AREAS, RURAL POPULATIONS.
SEW AS PEOPLE KNOW, 20% OF
AMERICANS ARE RURAL AREAS, AREAS
THAT HAVE HIGHER RATES OF CANCER
RELATED BEHAVIOR SUCH AS
SMOKING, OBESITY, SEDENTARY
BEHAVIOR, AND CHRONIC DISEASE.
THEREFORE CANCER INCIDENCE
ENDURE MORTALITIES HIGHER IN
THESE AREAS.
THESE AREAS ALSO HAVE HIGHER
RATES OF POVERTY, AND AS YOU CAN
SEON THE MAP, THE DARK MAROON
AREAS ARE THE RURAL AREAS AND
THOSE ARE AREAS, COUNTIES OF
PERSISTENT PROPERTY THAT WERE
TALKED ABOUT YESTERDAY IN THE
PRESENTATION, HOW IMPORTANT IT
IS.
SO THERE'S A REAL OVERLAP
BETWEEN RURALITY AND POVERTY.
THIS CREATES CHALLENGES FOR
CANCER TREATMENT, SUPPORTIVE
CARE AND TRANSPORTATION AND
FINANCES THAT ARE NEEDED FOR
BOTH OF THESE.
AND PROVIDERS IN THESE AREAS
HAVE LIMITED ACCESS TO
COMPREHENSIVE CARE.
SO THE CANCER CENTER SITS RIGHT
IN THE MIDDLE OF THE STATE OF
TENNESSEE.
AS YOU CAN SEE BY THE LIGHTER
BLUE SHADING ON THE MAP, THE
COUNTIES SURROUNDING VANDERBILT
INGRAM ARE URBAN COUNTIES, BUT
AS YOU CAN SEE BY THE DARKER
TEAL SHADING, 71 OF OUR TOTAL
123 COUNTIES IN OUR CATCHMENT
AREA ARE RURAL COUNTIES.
THESE COUNTIES ARE DIFFERENT
DEMOGRAPHICALLY THAN THE URBAN
COUNTIES, AND ALSO DIFFERENT
FROM THE UNITED STATES.
THEY ARE MUCH MORE WHITE, HAVE
VERY LOW HISPANIC OR LATINO
POPULATIONS, AND ALSO FAIRLY LOW
BLACK POPULATIONS.
SO I'M GOING TO FIRST ADDRESS A
LITTLE BIT ABOUT WHAT'S BEEN
GOING ON THERE FOR CLINICAL
SERVICES.
SO WHEN PANDEMIC HIT IN MARCH OF
2020, LIKE CENTERS ALL ACROSS
THE COUNTRY, TELEHEALTH TOOK
OFF, AND WE REALLY TRIED TO SEE
HOW CAN WE PROVIDE CANCER CARE
VIA TELEHEALTH.
WE STILL HAVEN'T FIGURED OUT HOW
TO DELIVER CHEMOTHERAPY OR
RADIOTHERAPY THROUGH THE
COMPUTER, BUT IF ANYBODY HAS A
SOLUTION, LET US KNOW.
BUT WE REALLY TRY TO FIND WAYS
TO BRING PATIENTS TO THE CENTER
VIRTUALLY.
SO BETWEEN 2020 AND 2023, WE'VE
HAD ALMOST 37,500 TELEHEALTH
VISITS.
AS YOU CAN SEE THE SHADING IN
THE -- THE LIGHT SHADING, 78% OF
THOSE VISITS WERE AMONG
NON-RURAL PATIENTS, SO PATIENTS
WHO LIVED IN THOSE RING COUNTIES
RIGHT AROUND OUR CANCER CENTER,
AS OPPOSED TO ONLY 22% WHO LIVED
IN RURAL COUNTIES FURTHER AWAY
FROM THE CANCER CENTER, AND YOU
MIGHT ARGUE HAD MORE NEED FOR
TELEHEALTH.
WITH RESPECT TO RACE AND
ETHNICITY, AGAIN, YOU KNOW, 74%
OF THE PATIENTS WRITE WHO
REWHITE WHORECEIVE TELEHEALTH AO
17% BLACK.
THESE HAVE TO BE TAKEN WITH A
LITTLE BIT OF A GRAIN OF SALT
BECAUSE OF THE DEMOGRAPHICS OF
OUR CATCHMENT AREA AND THESE
SOMEWHAT MATCH THE DEMOGRAPHICS
OF THE ENTIRE CATCHMENT AREA.
SO A FEW YEARS AGO WITH A
SUPPLEMENT TO OUR CANCER CENTER
GRANT, WE CONDUCTED A TELEHEALTH
SERVICES INTEREST SURVEY.
AND WE TOOK THIS OUT VIA OUR
COMMUNITY OUTREACH AND
ENGAGEMENT OFFICE TO HEALTH
COUNCILS ACROSS THE STATE.
AND WE OVERSAMPLED RURAL
COMMUNITIES IN ADDITION TO
SAMPLING URBAN COMMUNITIES, AND
WE ASKED THEM TO RATE THEIR
INTEREST IN RECEIVING TELEHEALTH
SERVICES.
AS YOU CAN SEE, THE BLUE BARS
ARE RURAL, THE RED BARS ARE
URBAN, AND ACROSS THE BOARD, IT
WAS FAIRLY SIMILAR IN TERMS OF
INTEREST BY RURAL AND URBAN
COUNTIES FOR TELEHEALTH, RANGING
ANYWHERE, YOU KNOW, KIND OF FROM
A LITTLE BIT MORE THAN 30% TO A
LITTLE BIT MORE THAN 70%,
EXPRESSING INTEREST.
AND IF ANYTHING, THE RURAL
COMMUNITIES IN MOST AREAS
EXPRESSED HIGHER INTEREST THAN
THE URBAN COMMUNITIES IN
TELEHEALTH.
BUT REMEMBER WHAT I JUST SHOWED
YOU, WHEN WE DELIVERED
TELEHEALTH FOR CLINICAL
SERVICES, 78% OF THOSE WERE FROM
URBAN AREAS, NOT RURAL AREAS.
HOWEVER, WE THOUGHT, OKAY,
PEOPLE ARE SHOWING INTEREST,
WHERE CAN WE GO FROM HERE?
SO THE FIRST THING WE DID WAS WE
CONDUCTED A VERY SMALL PILOT
TRYING TO SEE IF WE COULD BRING
CANCER SURVIVORSHIP SERVICES TO
RURAL COMMUNITIES.
SO WE PARTNERED WITH ONE OF OUR
FACILITIES IN OUR VANDERBILT
HEALTH AFFILIATED NETWORK.
SO THIS IS THE NETWORK THAT GOES
ACROSS OUR ENTIRE STATE INTO
PORTS OF ALABAMA AND KENTUCKY.
THETHESE ARE NOT VANDERBILT
FACILITIES.
THESE ARE AFFILIATED NETWORKS.
SO THESE ARE INDEPENDENT
HOSPITALS THAT JUST HAVE AN
AFFILIATION WITH VANDERBILT.
AND WE CHOSE ONE IN WESTERN
TENNESSEE THAT HAS A HIGH RURAL
POPULATION, LARGELY FROM AREAS
OF WESTERN TENNESSEE BUT ALSO
FROM AREAS OF ARKANSAS AND
MISSISSIPPI THAT BORDER WESTERN
TENNESSEE.
WE PILOT TESTED THE
IMPLEMENTATION OF BRINGING
SURVIVORSHIP CARE PLANNING VIA
TELEHEALTH.
AND WHAT WE DID WAS WE HAD THEM
REFER THEIR PATIENTS AT THE END
OF THERAPY, AND WE PROVIDED A
SURVIVORSHIP CARE VISIT FROM OUR
SURVIVORSHIP CLINIC AT
VANDERBILT INGRAM TO THE PATIENT
DIRECTLY IN THEIR HOME OR AT
THEIR CLINIC, WHEREVER THEY
PREFERRED, VIA TELEHEALTH.
SO OUR ADVANCED PRACTICE NURSE
GOT THEIR MEDICAL RECORDS
BECAUSE WE SHARED A SIMILAR
MEDICAL RECORD SYSTEM SO WE WERE
ABLE TO GET THEIR MEDICAL
RECORDS, THEY WERE ABLE TO
PREPARE A SURVIVOR SHIP PLANNED
AND PROVIDE A VISIT WITH THE
PATIENT, CARRIED OUT BY
NAVIGATORS IN THEIR OWN CLINIC.
SO THIS IS WHAT IT LOOKED LIKE.
VERY INTERESTING BECAUSE I JUST
TOLD YOU THAT RURAL COMMUNITIES
IN OUR COUNTRY TEND TO BE LESS
EDUCATED, HAVE LOWER
SOCIOECONOMIC STATUS, HAVE LOWER
RATES OF INSURANCE, AND OUR
POPULATION WHO ACTUALLY
PARTICIPATED IN THIS WAS REALLY
MUCH MORE DIVERSE WITH VARYING
LEVELS OF EDUCATION, INCLUDING
3% WITH DOCTORATE DEGREES, TWO
THIRDS HAD PRIVATE OR EMPLOYEE
INSURANCE, INCOME, MOST OF THE
PATIENTS FELL INTO THAT BETWEEN
20 AND $100,000 A YEAR, TWO
THIRDS WERE WHITE, AND ONE-THIRD
WERE BLACK.
AND AS YOU CAN SEE BY THE PIE
GRAPH, ALMOST ALL WERE WOMEN.
NOW THIS WAS A VERY SMALL PILOT
OF 35 PATIENTS.
BUT THIS WAS INTERESTING THAT
THESE WERE THE PEOPLE WHO ENDED
UP GETTING REFERRED.
WE USED THE NCCN, THE STRESS
THERMOMETER AND ASSOCIATED
SCALES AND WE FOUND
NON-SIGNIFICANT IMPROVEMENTS IN
PRACTICAL, FAMILY, EMOTIONAL,
SPIRITUAL AND PHYSICAL DOMAINS
BEFORE AND AFTER THE
INTERVENTION, AND AS YOU CAN
SEE, PRE AND POST INTERVENTION,
NOT A LOT OF DIFFERENCE ON THE
THERMOMETER.
WE DIDN'T EXPECT IT.
IT WAS A SMALL PILOT.
THE REASON IT TURNED OUT TO BE
SUCH A SMALL PILOT WAS THE
SATISFACTION WAS VERY HIGH AMONG
THE PATIENTS WHO PARTICIPATED.
85% RATED THEIR SURVIVORSHIP
CARE PLAN AS VERY VALUABLE.
64% SAID TELEHEALTH HELPED
IMPROVE THEIR ACCESS TO CARE.
THOSE WHO USED TELEHEALTH
GENERALLY RATED IT VERY WELL.
AND THE MAJORITY SAID THAT THEY
HAD A GOOD FEELING ABOUT USING
TELEHEALTH AGAIN.
SO BASED ON THIS, THE CLINIC
ACTUALLY EXPANDED THEIR OWN
SURVIVORSHIP SERVICES AND
CONTINUED TO PROVIDE
SURVIVORSHIP CARE AFTER THIS
PILOT TO THEIR PATIENTS USING
THEIR OWN STAFF.
SO WE SAW THAT AS A WHIP.
AS A WIN.
SO THE NEXT PIECE OF THIS WAS
CAN WE BRING SOME SUPPORTIVE
CARE SERVICES TO PATIENTS
UNDERGOING CANCER TREATMENT,
ACTIVE CANCER TREATMENT, AND CAN
WE PROVIDE SERVICES TO
PROVIDERS, REMEMBER, BECAUSE
THEY ARE FAR AWAY FROM OUR
CANCER CENTER IN THESE RURAL
COMMUNITY, AND THEY DON'T HAVE
ACCESS TO SUBSPECIALISTS.
AND THIS IS BEING SUPPORTED BY
AN ONGOING R01 FROM THE NCI.
THE IDEA WAS TO TEST A
MULTILEVEL TELEHEALTH-BASED IFNT
INTERVENTION.
ON THE PROVIDER SIDE, WE OFFERED
THE OPPORTUNITY FOR THEM TO
PRESENT ANY PATIENT THEY WANTED
IN THE STUDY TO A MOLECULAR
TUMOR BOARD.
THESE COULD BE PATIENTS FOR WHOM
THEY WANT TO KNOW SHOULD THEY
GET GENOMIC TESTING ON THE TUMOR
OR IF THEY GOT GENOMIC TESTING,
WHAT DOES IT MEAN?
AT THE PATIENT LEVEL, WE HAD TWO
SUPPORTIVE CARE INTERVENTIONS.
I'LL TELL YOU A LITTLE BIT MORE
ABOUT THEM IN TH IN A MINUTE, CR
SURVIVORRING AND THRIVING ON AN
EDUCATIONAL WEBSITE.
IMPLEMENTATION SCIENCING TO SAY
WHAT ARE THE FACILITATORS AND
BARRIERS TO LARGE SCALE
DISSEMINATION, IMPLEMENTATION?
IS THIS A MODEL THAT CAN WORK
THROUGHOUT OUR CATCHMENT AREA
WHERE WE CAN REALLY BRING
SUPPORTIVE SERVICES TO THOSE
LIVING IN RURAL COMMUNITIES?
SO THIS IS THE STUDY SCHEMA ON
THE PROVIDER SIDE.
THEY ENROLLED THE PATIENT, THEY
ELECTED TO PARTICIPATE IN TUMOR
BOARD, AND THEN AFTER WHICH WE
DID SOME SURVEYS OF THE PROVIDER
AND THE PATIENT TO SEE IF THAT
TUMOR BOARD WAS HELPFUL, AND ON
THE PATIENT LEVEL, THE PATIENT
WAS ENROLLED, IF THE PATIENT WAS
PROVIDED TUMOR BOARD, THEY
FILLED OUT A SURVEY, AND THEY
WERE INITIALLY RANDOMIZED TO THE
TWO PATIENT CARE INTERVENTIONS,
AND THEN BEFORE THE
INTERVENTIONS, THERE WAS A NEEDS
ASSESSMENT, AND AFTERWARDS,
THERE WAS NEEDS ASSESSMENT AND
SOME OTHER MEASURES.
SO THESE ARE THE TOPICS THAT ARE
ON OUR EDUCATIONAL WEBSITE.
SO -- AND WE CHOSE THESE TOPICS
TO KIND OF MATCH THE TOPICS THAT
WERE IN THE OTHER ARM OF THE
PATIENT INTERVENTION STUDY.
AND PATIENTS COULD CLICK ON
THESE, AND WE PUT FORTH, YOU
KNOW, VERY GOOD MATERIAL.
WE TOOK MATERIAL THAT WAS KIND
OF EASILY AVAILABLE BUT WE MADE
SURE THAT THERE WAS LITERACY
AROUND IT SO PEOPLE COULD
UNDERSTAND IT AND THEN THERE
WERE -- AND THEN THERE WERE
PROMPTS TO REACH US FOR
ADDITIONAL INFORMATION.
THE OTHER ARM FOR THE PATIENTS
WAS CANCER THRIVING AND
SURVIVING.
NOW THIS IS GENERALLY AN
IN-PERSON SELF-MANAGEMENT GROUP.
IT'S HELD OVER SIX WEEKS, EACH
SESSION IS ABOUT TWO HOURS A
WEEK, AND PEOPLE SIT IN A ROOM
AND REALLY THINK ABOUT ALL THE
ISSUES THAT ARE FACING PEOPLE
WITH CANCER.
IT'S BUILT ON A CHRONIC CARE
MODEL, AND IN FACT THE PATIENTS
GET THIS BOOK, LIVING A HEALTHY
LIFE WITH CHRONIC CONDITIONS.
AND THEN THERE'S THIS
SELF-MANAGEMENT TOOLBOX AND WEEK
BY WEEK, THEY GO THROUGH THIS
TOOLBOX AND HELP ONE ANOTHER
NAVIGATE WHAT'S GOING ON WITH
THEM WITH THEIR CANCER
DIAGNOSIS, AND TWO MODERATORS
GUIDE THIS.
AND WE CONVERTED THIS TO
TELEHEALTH.
NOW WE DID THIS ACTUALLY BEFORE
PANDEMIC AND THEN ONCE PANDEMIC
HIT, IT WAS VERY HELPFUL.
SO WHAT HAPPENED?
ABOUT TWO YEARS INTO THE GRANT,
WE SAW ACCRUAL WAS TERRIBLE.
SO INITIALLY WE ATTRIBUTED THIS
TO THE COVID-19 PANDEMIC.
BUT THEN EVEN AS THINGS STARTED
TO OPEN UP IN CLINICS AND MORE
PATIENTS WERE COMING IN, WE WERE
STILL NOT GETTING THE ACCRUAL WE
WANTED, SO WE TOOK A DEEP DIVE
AND WE ACTUALLY WENT BACK AND
LOOKED BECAUSE FORTUNATELY WE
CAPTURED THE REASONS WHY
PATIENTS AND PROVIDERS DIDN'T
WANT TO PARTICIPATE.
PROVIDERS SAID THEY DIDN'T WANT
TO PARTICIPATE IN THE MOLECULAR
TUMOR BOARD, THEY THOUGHT IT WAS
GREAT BUT WERE BUSY.
WHAT THEY PREFERRED TO DO IS
SEND ONE OF US A TEXT OR AN
EMAIL OR GET ON THE PHONE WIT WH
AN ONCOLOGIST AND SAY HEY I'VE
GOT THIS PATIENT WITH THIS
TUMOR, THIS IS WHAT IT SHOWED,
OR CAN I PHACS TO YOU, CAN YOU
LOOK AT IT?
OF COURSE NONE OF US ARE GOING
TO SAY NO.
WE SAID ARE YOU GOING TO PRESENT
THIS TO THE TUMOR BOARD, THAT'S
GOING TO TAKE TOO MUCH TIME,
EVEN THOUGH WE QO DO IT
VIRTUALLY, WE HAD HOURS THAT
AGREED WITH THEM.
SO THAT'S WHAT HE WITH LEARNED
ON THE PROVIDER SIDE.
ON THE PATIENT SIDE, PATIENTS
SAID TWO THINGS US TO.
ONE, WE DON'T WANT TO BE
RANDOMIZED TO TWO DIFFERENT
INTERVENTIONS.
WE WANT TO BE ABLE TO CHOOSE.
THE SECOND THING THEY SAID WAS,
WE'RE REALLY NOT INTERESTED IN A
SIX-WEEK PROGRAM BY TELEHEALTH,
TALKING TO PEOPLE THROUGH THE
COMPUTER WHO WE DON'T EVEN KNOW.
THAT'S WHAT THEY SAID.
SO WE SAID OKAY.
AND REMEMBER, OUR SECOND AIM WAS
AN IMPLEMENTATION SCIENCE AIM,
SO WE LEARNED VERY QUICKLY WHAT
THE BARRIERS WERE.
SO WE ACTUALLY CHANGED IT.
WE CONTINUED TO OFFER THE
MOLECULAR TUMOR BOARD TO THE
PHYSICIANS, AND THAT SLOWLY HAS
PICKED UP.
FOR THE PATIENTS, WE GAVE
EVERYBODY THE EDUCATION ARM
BECAUSE THAT'S THE ONE THEY
REALLY WANTED, AND THEN AFTER
HAVING THE EDUCATION ARM FOR SIX
WEEKS, WE ASKED THEM IF THEY
WANTED TO PARTICIPATE IN THE
CANCER THRIVING AND SURVIVING,
FIGURING THAT THEY HAD ALREADY
GOTTEN SOME INFORMATION AND WE
WOULD SELECT OUT THE PEOPLE WHO
REALLY THOUGHT IT WOULD BE
HELPFUL TO THEM.
SO OF THE 470 CURRENTLY ENROLLED
IN THE STUDY, 422 HAD EDUCATION
ONLY OF WHICH 42 WERE INITIALLY
RANDOMIZED, 42 HAD CANCER
THRIVING AND SURVIVING ONLY,
AGAIN BY INITIAL RANDOMIZATION,
AND ONLY 22 PATIENTS EVEN AFTER
GETTING THE OPTION OF THE
EDUCATIONAL WEBSITE, HAVE
ENROLLED IN THE CANCER THRIVING
AND SURVIVING.
AND WE HAVE NOW ONGOING FOCUS
GROUPS WITH PATIENTS AND
PROVIDERS TO DIG DEEPER INTO
THIS DAY DATA TO TRY TO SEE HOE
CAN WORK THIS OUT AND ADAPT THIS
TO THE FUTURE TO BE MORE
SUCCESSFSUCCESS -- TO MORE SUCCY
USE TELEHEALTH.
A LITTLE BIT ABOUT WHAT OUR PO
POPULATION LOOKED LIKE, KIND OF
AN OLDER POPULATION WITH A
MEDIAN AGE OF 61, A LITTLE BIT
MORE FEMALE, BECAUSE OF -- I
SHOWED YOU OUR CATCHMENT AREA,
RURAL COUNTIES, 88% WHITE, SO IN
THIS STUDY, 84% WHITE.
AND VERY LOW HISPANIC, WHICH IS
EXACTLY WHAT WE SEE IN OUR RURAL
COMMUNITIES.
WE RECRUITED PATIENTS FROM THREE
AREAS.
ONE BAPTIST MEMORIAL HEALTHCARE
IN WESTERN TENNESSEE, BORDERING,
AGAIN, ON ARKANSAS AND
MISSISSIPPI, THE SAME PLACE WE
USE FOR OUR SURVIVORSHIP AND
THERE WERE SEVEN PRACTICES
THERE.
RURAL PRACTICES THAT CONTRIBUTED
PATIENTS AND BALLAD HEALTH ON
THE EASTERN SIDE OF THE STATE
WHICH ALSO HAS SOME CLINICS IN
WEST VIRGINIA THAT ARE ALL RUR
RURAL.
WE ALSO RECRUITED PATIENTS WHO
LIVE IN RURAL AREAS AND ACTUALLY
TRAVEL MANY MILES TO GET TO
NASHVILLE FOR CARE, AND YOU CAN
SEE ON THE BOTTOM HOW FAR SOME
OF THESE PATIENTS TRAVEL, ONE
WAY, FOR THEIR CANCER CARE.
SO THIS IS A POPULATION WHERE
YOU THINK TO HAVE -- IS REALLY
GOING TO MAKE A DIFFERENCE.
DEMOGRAPHICS OF THIS POPULATION
ARE ACTUALLY VERY SIMILAR TO THE
DEMOGRAPHICS OF A VERY SMALL
PILOT POPULATION.
MORE INSURED, HIGHER INCOME THAN
A LOT OF RURAL POPULATIONS IN
THE COUNTRY, SO WE NEED TO JUST
TAKE THAT INTO ACCOUNT AS WE
LOOK AT OUR RESULTS GOING
FORWARD.
IN TERMS OF TELEHEALTH
EXPERIENCE, TWO THIRDS HAVE
NEVER USED TELEHEALTH BEFORE BUT
IN TERMS OF WHO DID, THOUGH,
THEY RATED IT VERY GOOD.
JUST A FEW OF THE RESULTS.
THE EDUCATIONAL NEEDS OF THE
PATIENTS, WE LOOKED BEFORE AND
AFTERWARDS, NOT A LOT OF
DIFFERENCE.
A LITTLE BIT OF IMPROVEMENT.
THE SAME WAS TRUE FOR EMOTIONAL
NEEDS, A LITTLE BIT OF
IMPROVEMENT AFTER INTERVENTION,
AND SIMILAR TRENDS WERE NOTED
FOR FINANCIAL NEEDS,
TRANSPORTATION, PERSONAL NEEDS,
AND WELLNESS NEEDS.
BECAUSE WE HAD A BUNCH OF
EDUCATION AROUND COMMUNICATION,
WE ALSO ASKED PATIENTS ABOUT
COMMUNICATING WITH THEIR
HEALTHCARE TEAM, AND AFTER THE
INTERVENTION, ALMOST ALL THE
PATIENTS REPORTED THEIR
COMMUNICATION WITH THEIR
HEALTHCARE TEAM BEING VERY GOOD
OR EXCELLENT.
SO WHAT WE'VE LEARNED FROM THESE
SET OF EXPERIENCES IS ALTHOUGH
TELEHEALTH HAS THE OPPORTUNITY
TO REALLY DECREASE DISPARITIES
AND INCREASE REACH IS NOT
UNIVERSALLY EMBRACED BY PATIENTS
OR PROVIDERS.
COMPETING PRIORITIES HAVE BEEN
THE NUMBER ONE REASON THAT HAVE
INTERVENED WITH THE ABILITY TO
PARTICIPATE IN TELEHEALTH.
THAT'S TRUE FOR THE PROVIDERS,
BUT IT'S ALSO TRUE FOR THE
PATIENTS, THAT'S SOME OF THE
OTHER FEEDBACK WE GOT FROM THE
PATIENTS.
WE JUST DON'T HAVE THE TIME.
WE GO IN, WE SEE OUR DOCTOR, WE
GET OUT, WE DON'T HAVE THE TIME
FOR ALL THIS OTHER STUFF.
SO THEIR LIVED EXPERIENCES ARE
GUIDING WHAT THEY'RE ABLE TO DO.
WE NEED TO CONTINUE TO BUILD
BIDIRECTIONAL RELATIONSHIPS WITH
OUR COMMUNITY TO OPTIMALLY
DELIVER CARE, AND WE NEED TO
WORK WITH THE COMMUNITY ABOUT
OTHER WAYS TO IMPROVE TELEHEALTH
SERVICES.
I DON'T THINK WE SHOULD, YOU
KNOW, KIND OF THROW AWAY THE --
WHAT IS IT, THE BABY WITH THE
BATHWATER, WHATEVER THAT SAYING
IS.
BUT I DO THINK THAT WE HAVE TO
THINK MORE BROADLY ABOUT USING
TELEHEALTH AND NOT JUST SAYING
TELEHEALTH IS GREAT, AND WE'RE
GOING TO INCREASE REACH BY USING
IT.
I'D LIKE TO THANK MY
CO-INVESTIGATORS.
I'VE GOT A GREAT TEAM AND AN
AMAZING RESEARCH TEAM WHO REALLY
REACHED OUT AND ENROLLED THESE
PATIENTS AND HELPED WITH ALL THE
DATA COLLECTION.
OF COURSE FUNDING FROM THE
NATIONAL CANCER INSTITUTE AND
OUR STUDY PARTICIPANTS.
THANK YOU FOR YOUR ATTENTION,
AND I'M HAPPY TO TAKE ANY
QUESTIONS.
[APPLAUSE]
>>HELLO.
MARKITA LEWIS FROM NORTHWESTERN
UNIVERSITY.
SUPER EXCITED ABOUT THIS TOPIC.
ALSO INTERESTED IN RURAL CANCER
SURVIVES.
I HAVE TWO QUESTIONS FOR YOU.
THE FIRST QUESTION IS, I LOVE
HOW YOU ENDED THE PRESENTATION
ADDRESSING COMMUNITY.
ESPECIALLY TALKING ABOUT
SUPPORTIVE CARE SERVICES.
AND YOU RAILROAD MENTIONED THAT
FOLKS WERE TRAVELING OVER
50 MILES TO GET TO THEIR
CLINICAL INSTITUTION.
WITH THAT BEING SAID, WHAT WERE
SOME OF THE WAYS THAT YOU ARE
CONNECTING FOLKS TO SERVICES,
SUPPORTIVE CARE SERVICES, THAT
WERE CLOSER TO THEM?
THAT'S MY FIRST QUESTION.
MY SECOND QUESTION IS, I
THINK -- I DON'T REMEMBER WHO
WAS THE PILOT OR IF IT WAS
ENCORE, BUT I THINK THERE WAS AN
ANALYSIS OF SOME CLINICAL
VARIABLES SUCH AS FOLLOW-UP
CARE, AND I WAS WONDERING, WERE
YOU ABLE TO ACTUALLY INVESTIGATE
IF TELEHEALTH INCREASED ANY KIND
OF TREATMENT OUTCOMES OR
CLINICAL CARE OUTCOMES.
>>GREAT QUESTION.
SO FOR THE FIRST QUESTION, WHAT
WE'VE -- WHAT WE DID WITH
ACTUALLY BOTH STUDIES IS WE
CONNECTED PATIENTS WITH PATIENT
NAVIGATORS IN THEIR OWN CENTERS,
AND WE ALSO GAVE THEM VIRTUAL
ACCESS TO VANDERBILT INGRAM
CANCER CENTER NAVIGATORS WHO
WORKED VIRTUALLY BUT LIVE IN
THAT AREA IN THOSE COMMUNITIES.
SO WE HAVE NAVIGATORS -- BECAUSE
OF OUR CATCHMENT AREA BEING SO
WIDE, ALL OF OUR NAVIGATORS DO
NOT SIT IN NASHVILLE.
THEY ARE ACTUALLY ACROSS THE
STATE AND THEY WORK VIRTUALLY
AND THEY WORK WITH POPULATIONS
IN THOSE COMMUNITIES.
SO WE WERE ABLE TO PUT -- HOOK
UP PATIENTS WITH THE NAVIGATORS
IN THOSE AREAS WHO COULD THEN
FIND THEM SERVICES.
AND IN TERMS OF FOLLOW-UP
SERVICES, THAT IS SOMETHING THAT
WE ARE CURRENTLY EVALUATING ON
THE ENCORE STUDY, IS TO SEE HOW
ADHERENT PATIENTS WERE WITH
THEIR CANCER TREATMENT AND SEE
IF THE INTERVENTIONS MADE A
DIFFERENCE, AND FOR OUR
SURVIVORSHIP PILOT, WE ACTUALLY
HAD 85% OF OUR PARTICIPANTS
FOLLOW THE EXACT RECOMMENDATIONS
THAT WERE IN THEIR SURVIVORSHIP
CARE PLAN, AND WHEN THEY HAD
TROUBLE FOLLOWING IT, THEY
CALLED THE NAVIGATOR WHO THEN
CALLED US TO SAY, HELP US, WE
WANT TO FOLLOW THESE
RECOMMENDATIONS.
>>HI, SHA THANK YOU FOR YOUR T.
THIS WAS GREAT.
I THINK THAT -- YOU'RE RIGHT, I
THINK TELEHEALTH CAN REALLY
INCREASE THE REACH WE HAVE WITH
PATIENTS IN A WAY.
BUT I WANTED TO HAVE A QUESTION
ABOUT WAYS IN WHICH WE CAN
IMPROVE TELEHEALTH.
WAS THERE ANY DISCUSSION AMONGST
YOUR PARTICIPANTS ABOUT HOW TO
MAKE IT MORE ACCESSIBLE FOR
PEOPLE WITH DISABILITIES,
ESPECIALLY FOLKS WHO HAVE
COGNITIVE DELAY DUE TO TREATMENT
AND/OR FATIGUE AND WAYS IN WHICH
WE COULD IMPROVE THAT?
>>GOOD QUESTION.
SO TWO THINGS.
ONE, FOR THE STUDY, WE OFFERED
ALL PARTICIPANTS WHO WERE
PARTICIPATING IN TO HAVE LIKE
LITERALLY AN ONLINE TUTORIAL OF
HOW TO USE THE SYSTEM, AND SOME
PEOPLE DID TAKE US UP ON THAT.
SOME PEOPLE DEFINITELY SAID THAT
THEY WERE JUST -- IT WAS JUST
TOO CONFUSING TO THEM SO THAT IS
ACTUALLY ONE OF THE AREAS WE'RE
EXPLORING IN OUR FOCUS GROUPS
THAT ARE GOING ON AS WE SPEAK TO
SAY OKAY, HOW DO WE MAKE THIS
SIMPLER?
AND THERE MAY BE SIMPLER WAYS.
MAYBE WE NEED TO BE MORE SIMPLE
AND USE JUST A PHONE AND NOT
HAVE -- EVEN THOUGH WE THINK THE
FACE-TO-FACE IS SO IMPORTANT,
CAN WE USE A PHONE, CAN WE USE
SOMETHING SIMILAR, LIKE
FACETIME, WHICH IS EASIER FOR
MANY PEOPLE THAN ZOOM OR TEAMS,
INCLUDING ME SOMETIMES.
ESPECIALLY TEAMS.
SO -- BUT WE'RE EXPLORING THAT
IN MORE DEPTH BECAUSE WE KNOW
THERE ARE BETTER WAS I AND WE
WANT THEM TO TELL US THE WAYS.
THE OTHER THING THAT ALSO CAME
UP WAS WE WERE CONCERNED THAT
PEOPLE DIDN'T HAVE BROADBAND
ACCESS OR A DEVICE, AND AS PART
OF THE STUDY, WE PROVIDED THAT
TO THE PATIENT SO THAT WAS NOT A
BARRIER TO THEM PARTICIPATING.
>>THANK YOU.
EXPANDING ON THE POINT YOU HAD
ABOUT BROADBAND, THAT'S
SOMETHING THAT'S REALLY
IMPORTANT TO ME.
SO IN CERTAIN SEGMENTS OF RURAL
ILLINOIS, IT ACTUALLY HAS WORSE
ACCESS TO INTERNET THAN BEING ON
A PLANE.
IF YOU CAN ALL APPRECIATE THAT.
THERE'S NO RECEPTION.
AND WE'VE DONE A STUDY WHERE
WE'VE ASSESSED ACCESS TO
SMARTPHONES, ACCESS TO DEVICES
AND THE LIKE.
PEOPLE HAVE THEM, BUT THEIR
HOMES AND WHERE THEY'RE LOCATED
DOES NOT -- LIKE THERE'S NO
RECEPTION FOR THAT BEAUTIFUL
PHONE.
AND RELATED TO THAT, A NUMBER OF
OUR DIGITAL HEALTH APPS, BECAUSE
WE WANT THEM TO BE VISUALLY
APPEALING, WE WANT THEM TO BE
BEAUTIFUL, WE WANT THEM TO MAYBE
BE HIGH-TECH, TAKE UP A LOT OF
DATA.
SO I AM CURIOUS ABOUT HOW YOUR
CANCER CENTERS, OUTREACH AND
ENGAGEMENT TEAM IS WORKING
TOWARDS OUR ADVOCATING FOR JUST
WIDESPREAD ACCESS TO BROADBAND
TO SUPPORT RURAL POPULATIONS.
BECAUSE ALL CANCER CENTERS
COMMITTED TO RURAL COMMUNITIES
SHOULD BE INVOLVED IN THIS
FIGHT, BECAUSE CURRENTLY ACCESS
TO DATA IS NOT CONSIDERED A
RIGHT.
>>WE COMPLETELY AGREE, AND THE
TELEHEALTH TEAM AT VANDERBILT IS
ACTUALLY WORKING VERY CLOSELY,
TRYING TO ADVOCATE AT THE STATE
LEGISLATURE LEVEL TO MANDATE
BROADBAND ACCESS ACROSS OUR
STATE SO EVERYBODY HAS EQUAL
ACCESS TO CARE.
SO WE'RE NOT -- WE HAVEN'T BEEN
SUCCESSFUL YET, BUT WE ARE
WORKING ON THAT AND I COMPLETELY
AGREE THAT THERE NEEDS TO BE
BETTER WAYS AND WE ACTUALLY --
AS WE DESIGN THIS, WE BROUGHT IN
PEOPLE FROM THESE COMMUNITIES TO
TRY TO TROUBLESHOOT BEFORE WE
EVEN STARTED WHAT SOME OF THOSE
PROBLEMS ARE, AND NOW AS WE GO
THROUGH OUR FOCUS GROUPS, WE'LL
BE GETTING MORE INFORMATION, AND
THEN BRINGING IT BACK REALLY TO
LEGISLATORS TO SAY WE NEED TO DO
THIS, YOU KNOW, THIS IS A PLACE
WHERE MAYBE THE GOVERNMENT NEEDS
TO STEP IN, AND REALLY HELP
BUILD BETTER INFRASTRUCTURE
ACROSS OUR STATES AND ACROSS OUR
RURAL AREAS.
I CANNOT AGREE MORE.
>>I HAVE ONE QUESTION, AND IT
RELATES TO THE DISTANCE YOU
SHOWED THAT SOME OF THESE
PATIENTS COME REALLY FAR TO GET
IN-PERSON CARE.
SO IN TERMS OF TAKING UP
TELEHEALTH, IS THE DISTANCE AN
IMPORTANT FACTOR OR ARE OTHER
FACTORS MORE IMPORTANT THAT
PEOPLE WOULD ENGAGE IN
TELEHEALTH ?L
>>SO WHAT WE ACTUALLY HAVE SEEN
IS, INTERESTINGLY ENOUGH FOR
CLINICAL CARE, IT THE PATIENTS
WHO LIVE CLOSEST TO US WHO ARE
UTILIZING TELEHEALTH MORE THAN
THE PATIENT WHO LIVE FURTHER
AWAY FROM US.
WHICH IS COUNTERINTUITIVE TO
WHAT WE WOULD THINK.
NOW THERE ARE CERTAINLY SOME
THAT LIVE FAR AWAY THAT THINK
IT'S GREAT, BUT A LOT OF THE
PATIENTS WH JUST SAY I'M JUST GG
TO GET IN THE CAR AND I'M JUST
GOING TO GO.
SO IT IS VERY INTERESTING THAT
IT'S NOT NECESSARILY THE PEOPLE
WHO LIVE FURTHEST AWAY THAT ARE
TAKING ADVANTAGE OF IT.
>>I JUST HAD A QUICK QUESTION
ON THE RELATIONSHIP OF THE
INSTITUTION WITH THOSE THAT WERE
FARTHER OUT.
AND DID YOU HAVE ANY TYPE OF
MEASUREMENT TO KNOW HOW MUCH
TRUST OR HOW MUCH THEY HAD EVEN
INTERACTED WITH VANDERBILT, WITH
THE INSTITUTION FOR THEM TO EVEN
THINK ABOUT GETTING SUPPORT?
>>O OH, THE PATIENTS?
>>MM-HMM.
>>SO THESE ARE AFFILIATES.
WE'VE HAD A 10-YEAR RELATIONSHIP
WITH THESE INSTITUTIONS,
INCLUDING BRINGING SOME OF OUR
PEOPLE OUT THERE, WE BRING
PROGRAMS OUT THERE ALL THE TIME,
SO WE HAVE A GOOD RELATIONSHIP
WITH THESE INSTITUTIONS, AND,
THEREFORE, WITH THEIR CLINICS.
AT THE VERY BEGINNING, WE
ACTUALLY WENT OUT TO THEM, TO
THE PLACES, AND SET IT UP, THEN
PANDEMIC HIT AND EVERYTHING SHUT
DOWN, BUT OUR GOAL NOW IS NOW
THAT THINGS HAVE SETTLED DOWN,
IS TO ACTUALLY CIRCLE BACK
AROUND AND GO TO THE CLINICS
AGAIN AND TALK TO THE PATIENT
AND WE'RE HOPEFULLY GOING TO GET
SOME OF THAT INFORMATION FROM
THE FOCUS GROUPS TO SEE IF MAYBE
WE NEEDED TO ESTABLISH MORE.
THIS WAS HINDERED BY THE FACT
THAT WE PLAN TO DO MORE IN
PERSON UP FRONT AND THIS PROJECT
STARTED VERY SOON AFTER PANDEMIC
UNFORTUNATELY.
>>SO THIS WAS OUR LAST
QUESTION, SO THANK YOU SO MUCH,
DR. FRIEDMAN, FOR THIS GREAT
PRESENTATION.
[APPLAUSE]
NOW THE SECOND SPEAKER,
DR. JOSEPHINE FELICIANO.
SHE'S PROFESSOR OF ONCOLOGY AT
JOHN HOPKINS AND SHE'S ALSO THE
MEDICAL DOCTOR FOR -- ONCOLOGY
PROGRAM AT THE BAY VIEW MEDICAL
CENTER, AND SHE HAS A
LONG-STANDING INTEREST IN CANCER
HEALTH DISPARITIES.
AND HAS ALSO DONE SOME WORK ON
TELEHEALTH ISSUES IN THE COVID
AREA.
THANK YOU SO MUCH FOR COMING AND
TELLING US ABOUT YOUR EXPERIENCE
WITH TELEHEALTH AND HEALTH
DISPARITIES.
>>THANK YOU.
CAN EVERYONE HEAR ME OKAY?
GREAT.
SO THANK YOU FOR THE
INTRODUCTION.
MY NAME IS JOY FELICIANO.
I'M A MEDICAL THORACIC
ONCOLOGIST.
I CONSIDER MYSELF MOSTLY A
CLINICIAN, AND I AM VERY HUMBLED
TO BE INVITED TO GIVE THIS TALK
TODAY.
I'M HOPING THAT WITH SOME OF THE
DATA THAT I PRESENT, I CAN SORT
OF GIVE A MORE PERSONAL SLANT ON
WHY ALL OF THE WORK THAT YOU'RE
DOING AND ALL OF THE
COLLABORATIONS THAT WE'RE
FORMING ACTUALLY IMPACT THE
PATIENTS I SEE, OUR FAMILY
MEMBERS, AND ALL THE PEOPLE THAT
MIGHT BE AFFECTED BY HEALTH
INEQUITIES.
TODAY I'LL TALK A LITTLE BIT
ABOUT TELEMEDICINE ENGAGEMENT TO
REDUCE DISPARITIES, BUT ALSO
WANTED TO FOCUS ON OUR
EXPERIENCE DURING THE COVID
PANDEMIC IN THE VERY BEGINNING
TO ALSO EMPHASIZE WHAT CAN GO
WRONG WHEN WE CAN'T THOUGHTFULLY
IMPLEMENT SOME OF THE
INTERVENTIONS THAT WE'RE TRYING.
SO I'LL GO OVER TELEHEALTH
ENGAGEMENT AND THE
OPPORTUNITIES, KIND OF EXPAND ON
SOME OF THE WORK THAT HAS
ALREADY BEEN DISCUSSED, BUT THEN
ALSO FOCUS ON SOME OF THE
CHALLENGES THAT WE HAVE FACED,
AND I THINK MANY CLINICIANS ARE
FACING WITH IMPLEMENTATION OF
TELEHEALTH, TALK A LITTLE BIT
ABOUT OUR EXPERIENCE AND TO
SOMEONE'S QUESTION ABOUT
ASSOCIATION WITH CANCER
OUTCOMES, TRYING TO SHOW THAT
OUR LIMITED ACCESS OR A
PATIENT'S INABILITY TO ACCESS
CARE MAY INDEED HAVE AN
IMPORTANT IMPACT NEGATIVELY ON
CANCER OUTCOMES, AND THEN
CONSIDERATIONS FOR PRACTICE AND
POLICY FOR IMPLEMENTATION AND
EXPANSION OF TELEHEALTH IN A
FAIR AND EQUITABLE WAY.
SO AS WE'VE ALL TALKED ABOUT AND
SEEN, DISPARITIES IN ONCOLOGY
CAN IMPACT ALL PHASES OF THE
CANCER SPECTRUM, FROM RISK
FACTORS OF DEVELOPING CANCER TO
SCREENING, DIAGNOSIS, TREATMENT,
AND ULTIMATELY AFFECTING CANCER
OUTCOMES SUCH AS SURVIVAL.
AND WHILE TELEHEALTH BEGAN AS A
WAY TO INCREASE ACCESS TO CARE
FROM A DISTANCE, AND TO IDEALLY
EXPAND CARE FOR PEOPLE WHO MAY
NOT HAVE ACCESS, WE HAVE SEEN
SOME CHALLENGES.
SOME OF THE WAYS THAT WE
THINK -- OR THAT WE'VE SEEN
TELEMEDICINE CAN POTENTIALLY
REDUCE DISPARITIES IS TO
INCREASE COMMUNICATION BETWEEN
CENTERS WITH DIFFERENT RESOUR
RESOURCES, SO FOR EXAMPLE,
DISCUSSIONS OF THE MOLECULAR
TUMOR BOARD THAT DR. FRIEDMAN IS
STUDYING.
ACCESS TO SUBSPECIALTY CARE,
SIMILARLY WITH THE MOLECULAR
TUMOR BOARDS.
EDUCATION AND SCREENING, AND
THEN ALSO ACCESS TO CLINICAL
TRIALS, AS WE'RE ALL TRYING TO
EXPAND OUR REACH.
NOW THERE ARE WAYS THAT IMPROVED
ACCESS TO TELEMEDICINE FOR LOW
RESOURCE SITES IN SUBSPECIALTY
CARE CAN IMPROVE CANCER
SCREENING, FOR EXAMPLE, AND
DIAGNOSIS.
SO SOME EXAMPLES OF THIS, IN
TANZANIA, THERE'S A PROGRAM
USING TRANSMISSION OF DIGITAL
IMAGES FOR A PROGRAM CALLED "MY
SKIN," WHERE PARENTS WITH A
ALBINISM, A VERY STIGMATIZED
CONDITION IN TANZANIA, CAN BE
SCANNED FOR SKIN CANCER AND
THOSE IMAGES CAN BE TRANSMITTED
TO SUBSPECIALISTS.
SIMILARLY, THERE'S PROGRAMS
WHERE DIGITAL IMAGING, FOR
EXAMPLE, OF CERVICAL CANCER
SCREENING AND PAP SMEARS CAN BE
EVALUATED CENTRALLY TO IMPROVE
THE DIAGNOSIS OF CERVICAL CANCER
SCREENING.
AND A LITTLE BIT CLOSER TO HOME
IN PHILADELPHIA, FOR EXAMPLE,
DR. IRKMAN, WHO'S A THORACIC
SURGEON IN PHILADELPHIA, HAD
IMPLEMENTED A SINGLE SCREENING
FOR LUNG CANCER FOR PATIENTS
DURING THE COVID PANDEMIC AND
SHOWED THAT ALTHOUGH THE TOTAL
NUMBERS OF LUNG CANCER SCREENING
WAS REDUCED BY TELEHEALTH VERSUS
IN PERSON, OF THE PEOPLE WHO
WERE SCREENED FOR LUNG CANCER,
THEY SHOWED SIMILAR RATES OF
STAGE OF CANCER DIAGNOSIS,
POSITIVE SCREEN RATES, ET
CETERA, DEMONSTRATING THE
FEASIBILITY THAT TELEHEALTH CAN
ALLOW FOR SOME OF THESE
SCREENING OPPORTUNITIES.
TELEHEALTH CAN ALSO ALLOW FOR
ACCESS TO SUBSPECIALTY CARE AND
CONSOLIDATION OF CARE,
PARTICULARLY FOR THINGS SUCH AS
RARE CANCERS, SO FOR EXAMPLE,
THE ROYAL MARSTON HOSPITAL IS A
SPECIALTY SITE FOR SARCOMA
MANAGEMENT AND TREATMENT IN THE
U.K., AND WHAT THEY SHOWED IS
THAT PATIENTS WHO WERE OPEN TO
TELEHEALTHCARE AT A DISTANCE HAD
HIGH LEVELS OF SATISFACTION, AIM
SORRY IT'S A SMALL GRAPH, BUT
THESE ARE SORT OF THE SURVEYS OF
PATIENT EXPERIENCE AND THEIR
SATISFACTION WITH TELEHEALTHCARE
FOR FOLLOW-UP OF SARCOMAS.
THERE'S GUIDELINES BY MENTORING
AND SUPPORTING OTHER CLINICIANS.
FOR EXAMPLE, THIS IS A
TELEMEDICINE MENTORING APPROACH
CALLED PROJECT ECHO, WHICH
ALLOWS FOR DIDACTIC AND TEACHING
SESSIONS FOR CASE PRESENTATIONS
FOR CANCER, FOR SMALLER CANCER
CENTERS IN THE COMMUNITY TO WORK
WITH ACADEMIC CANCER SITES TO
DISCUSS TUMORS, DISCUSS CASES,
AND UNDERSTAND WHAT GUIDELINE
CONCORDANT RECOMMENDATIONS MIGHT
BE.
AND THEN FINALLY, WE ALSO SEE
THAT TELEHEALTH HAS AN
OPPORTUNITY TO PROVIDE ACCESS TO
CLINICAL TRIALS.
ONE OF OUR CHALLENGES AS
CLINICAL INVESTIGATORS IS THAT
OFTENTIMES WE'RE STRUGGLING WITH
HOW DO WE BRING THE RESEARCH TO
OUR PATIENTS SO ONE EXAMPLE OF
THIS IS THE AUSTRALIAN MODEL,
TELETRIAL MODEL WHERE THEY'RE
USING A HUB AND SPOKE MODEL OF
THE HUB BEING THE PRIMARY SITE
FOR THE CLINICAL TRIAL, BUT THEN
PATIENTS CAN BE TREATED AND
EVALUATED IN SATELLITE SITES
WITH ALL OF THE INFORMATION AND
FEEDBACK COMING BACK TO THAT HUB
FOR DISCUSSION AND ASSESSMENT.
THERE'S ALSO BEEN EXAMPLES WHERE
CLINICAL TRIAL ACCRUAL HAS BEEN
SHOWN TO BE FEASIBLE, SO THIS
STUDY, FOR EXAMPLE, IN PATIENTS
WHO ARE OFFERED TELEHEALTH
VERSUS IN-PERSON FOR AN INITIAL
BREAST CANCER CONSULTATION
DURING A PERIOD WHERE THERE WAS
A PROSPECTIVE STUDY SHOWED THAT
DESPITE THE DIFFERENCES IN
PREFERENCE BETWEEN TELEHEALTH
AND IN PERSON VISITS, PATIENTS
WHO WERE OFFERED THIS TRIAL
ENROLLED AT SIMILAR RATES
WHETHER IT WAS TELEHEALTH VERSUS
IN PERSON.
SO AGAIN KIND OF DEMONSTRATING
THAT CLINICAL TRIAL
OPPORTUNITIES EXIST WITH THE
EXPANSION OF TELEHEALTH.
WHICH FEEL MANY OF THESE
INTERVENTIONS MIGHT BE HELPING
PATIENTS IN WAYS THAT MIGHT BE
DIFFICULT TO QUANTIFY, SUCH AS
INCLUSION OF FAMILY AND
CAREGIVERS, INCREASING
SUPPORTIVE CARE, REDUCING TRAVEL
TIME.
MANY OF OUR PATIENTS EXPERIENCE,
YOU KNOW, FINANCIAL CHALLENGES
AND THE EXPENSE OF GOING BACK
AND FORTH TO DIFFERENT CLINICS
OR DIFFERENT APPOINTMENTS CAN
POTENTIALLY BE REDUCED WITH THE
EXPANSION OF TELEHEALTH.
AND SO THERE'S MANY
OPPORTUNITIES TO SHOW THAT CAN O
CARE, BUT I WANTED TO TALK A
LITTLE BIT ABOUT THE BARRIERS TO
THE IMPLEMENTATION AND
ENGAGEMENT, PARTICULARLY THAT
WE'VE SEEN DURING COVID, WHEN
MOST OF US HAD TO RAPIDLY EXPAND
THE USE OF TELEHEALTH.
SO SOME OF THE POTENTIAL
BARRIERS THAT WE'LL TALK ABOUT
WAS THAT RAPID IMPLEMENTATION
REALLY EXACERBATED AND
HIGHLIGHTED CURRENT DISPARITIES.
SO THESE WEREN'T NECESSARILY
DISPARITIES THAT JUST DEVELOPED,
BUT RATHER THAT THESE
HIGHLIGHTED WHAT WE ALREADY KNEW
WAS THERE.
SOME OF THAT'S RELATED TO LOW
UPTAKE, THE DIGITAL DIVIDE WHICH
IS KIND OF A COMPOSITE SCORE AS
WELL AS BROADBAND ACCESS AND
WIFI ACCESS.
AND WHAT WE SAW AND WHAT MANY
CENTERS SAW DURING COVID WAS
THAT COVID RESULTED IN A RAPID
IMPLEMENTATION OF TELEHEALTH.
YOU CAN SEE HERE THIS IS FROM
THE UNIVERSITY OF MICHIGAN,
WHERE THEY EVALUATED ALL OF THE
VISITS IN THE ONCOLOGY CENTER,
BOTH MEDICAL ONCOLOGY, RADIATION
ONCOLOGY, SURGICAL ONCOLOGY, AND
YOU CAN SEE THAT BETWEEN MARCH,
ESSENTIALLY MID MARCH, ALL OF A
SUDDEN YOU WENT FROM ZERO
TELEHEALTH VISITS TO, YOU KNOW,
HUNDREDS OF -- AND THOUSANDS OF
TELEHEALTH VISITS AT A TIME.
AND WHAT THESE INVESTIGATORS
WANTED TO IDENTIFY WERE SOME OF
THE BARRIERS OR CLINICAL AND
DEMOGRAPHIC FACTORS THAT WERE
ASSOCIATED WITH THE SUCCESS OF A
TELEHEALTH VISIT.
AND AS MANY PEOPLE HAVE
IDENTIFIED, THEY ALSO FOUND THAT
RACE, RURAL POPULATIONS,
INSURANCE STATUS, PARTICULARLY
MEDICAID OR MEDICARE INSURANCE,
WAS ASSOCIATED WITH A LOWER
LIKELIHOOD OR A HIGHER ODDS OF
AN UNSUCCESSFUL TELEHEALTH
VISIT.
SO HIGHLIGHTING SOME OF THE
DISPARITIES THAT MANY OF YOU
HAVE ALSO SHOWN IN YOUR WORK.
FROM A CLINICAL AND HEALTH
SYSTEM STANDPOINT, WE SAW A LOT
OF BARRIERS.
MANY OF THE CLINIC WORKFLOWS
WERE DESIGNED FOR IN-PERSON
VISITS, SO THINGS, FOR EXAMPLE,
VITAL SIGNS, THOSE WERE DESIGNED
FOR IN PERSON.
MEDICAL RECONCILIATIONS, THE
SYSTEMS CAN BE COMPLEX.
SOMETIMES OUR CARE INVOLVES -- I
HAVE, FOR EXAMPLE, A
MULTIDISCIPLINARY CLINIC WHERE
WE HAVE RADIATION ONCOLOGY,
PALLIATIVE CARE, PULMONARY, ALL
IN ONE CLINIC, AND SOMETIMES
THESE VISIT MIGHT BE
REQUIRING -- OR MIGHT BE
IMPACTING MULTIPLE VISITS AT ONE
TIME.
THEY ALSO REQUIRE ACCESS IN
DIGITAL LITERACY.
IN TERMS OF POPULATION
READINESS, WE SAW THAT MANY OF
OUR PATIENTS WEREN'T READY FOR
THE IMPLEMENTATION OF
TELEHEALTH, PARTICULARLY OLDER
PATIENT POPULATIONS, OR THOSE
WHO ARE LACKING BROADBAND AND
INTERNET ACCESS.
AND THEN TO SOMEONE'S POINT
ABOUT PATIENTS WITH OTHER NEEDS,
THERE WERE CHALLENGES WITH
THINGS SUCH AT HEARING IMPAIRED
OPPORTUNITIES OR TRANSLATORS
AVAILABLE BY TELEHEALTH, FURTHER
SORT OF ALIENATING SOME OF THESE
PATIENTS.
AND ALSO WHAT WE SAW IS THAT AT
A POLICY LEVEL, THERE WERE
FACTORS THAT REALLY HELPED TO
WIDEN THESE DISPARITIES.
FOR EXAMPLE, REIMBURSEMENT
MODELS REALLY PRIORITIZE
IN-PERSON VISITS.
I, FOR EXAMPLE, AS A PHYSICIAN
AT A CLINIC, WE'RE REALLY
ENCOURAGED TO AVOID TELEHEALTH
BECAUSE IT DOESN'T GET
REIMBURSED IN THE SAME WAY, WE
CAN'T CHARGE THE SAME SORT OF
FACILITY FEES, WHICH ALSO HAVE
IMPACT ON THE RESOURCES FOR THE
HOSPITAL, AS WELL AS LOWER
REIMBURSEMENT FOR AUDIO VISITS.
SO THERE'S A LACK OF PARITY FOR
THE TYPE OF TELEHEALTH
INTERVENTION THAT WE'RE TALKING
ABOUT.
SO I WANTED TO BRING IT BACK A
LITTLE BIT TO A CLINICAL
EXPERIENCE WITH OUR TELEHEALTH
EXPERIENCE DURING COVID.
I THINK IT WAS MARCH 16TH WHERE
EVERYTHING SHUT DOWN.
I THOUGHT MY KIDS WOULD JUST
HAVE A FEW EXTRA DAYS OF SPRING
BREAK BUT THAT WASN'T THE CASE.
SO I WANTED TO GIVE YOU AN IMAM
OF ONE OF MY PATIENTS.
HE'S A 60-YEAR-OLD BLACK PATIENT
WHO HAS WELL CONTROLLED HIV.
HE'S HAD HIV FOR OVER 20 YEARS.
HE RECEIVES HIS CARE ACROSS TOWN
AT THE UNIVERSITY OF MARYLAND
AND IF YOU'RE NOT FAMILIAR WITH
BALTIMORE, THERE'S EAST
BALTIMORE AND WEST BALTIMORE,
AND THERE'S A MAIN ROAD THAT
SPLITS THE TWO AND UNIVERSITY OF
MARYLAND IS ON THE OTHER SIDE OF
THAT ROAD, SO IT CAN BE
CHALLENGING FOR PATIENTS TO GET
TO AND FROM THE DIFFERENT SITES.
HE RELIES ON PUBLIC
TRANSPORTATION.
HE RELIES ON A BUS.
HE LIVES ALONE.
HE HAS A BROTHER IN NEW JERSEY
WHO OCCASIONALLY CAN VISIT BUT
IF YOU RECALL DURING COVID, WE
COULDN'T HAVE PATIENTS OR PEOPLE
COME FROM ACROSS STATE.
HE HAS A FLIP PHONE, AND HE HAS
NO WIFI ACCESSIBLE DEVICE.
AND HIS TREATMENT WAS
CHALLENGING BECAUSE HE WAS
UNDERGOING DAILY CHEMO RADIATION
FOR A LOCALLY ADVANCED
ESOPHAGEAL CANCER, STARTING IN
FEBRUARY 2020, WHICH MEANT THAT
HIS TREATMENT WAS GOING ON
THROUGH MARCH OF 2020, SO HIS
TREATMENT UNFORTUNATELY HIT
RIGHT IN THE MIDDLE OF WHEN
EVERYTHING REALLY SHUT DOWN.
AND WHAT HAPPENED WITH HIM IS --
AND I'LL SHOW SOME OF THE DATA
LATER, IS THAT HE ENDED UP
MISSING ALL OF HIS TELEHEALTH
APPOINTMENTS.
WE WOULD TRY TO REACH BY
TELEPHONE.
HE WAS STILL GETTING HIS
RADIATION, BUT THEN THERE WASN'T
THAT SORT OF ASSESSMENT OF HIM
REGULARLY TO KNOW IF HE WAS
ACTUALLY DOING OKAY.
HE ENDED UP IN THE HOSPITAL FOR
DEHYDRATION AND ENDED UP NEEDING
A FEEDING TUBE, AND HE'S OKAY
NOW, BUT IT WAS A VERY
CHALLENGING PERIOD FOR HIM.
AND SO SIMILAR TO OTHER
INVESTIGATORS, OUR EXPERIENCE
WITH TELEHEALTH WAS VERY SIMILAR
TO WHAT I SHOWED BEFORE.
WHERE WE HAD NO TELEHEALTH
PLATFORM PRIOR TO MARCH OF 2020.
AND ALL OF A SUDDEN, THIS IS A
GRAPH OF OUR TOTAL VISITS, SO ON
AVERAGE, WE HAVE, PRIOR TO
COVID, OVER A THOUSAND VISITS IN
OUR CLINIC PER MONTH.
AND YOU CAN SEE THE ORANGE LINE
IS THE PERCENTAGE OF
TELEMEDICINE.
SO WITHIN A MONTH, WE WENT FROM
ZERO TO 85% TELEMEDICINE VISITS.
PREDOMINANTLY THE IN-PERSON
VISITS, WE WERE TRYING TO DO
THOSE WHO WERE ON ACTIVE
THERAPY, BUT IT WAS VERY
LIMITED.
WE WERE ALL BEING TOLD, YOU
KNOW, DON'T COME IN TO CLINIC,
WE DON'T HAVE ENOUGH PPE, AND SO
WE REALLY WERE STRUGGLING WITH
HOW DO WE ACTUALLY IMPLEMENT
THIS.
SO WE WANTED TO ALSO LOOK,
THOUGH, WE KNEW WE WOULD
PROBABLY IDENTIFY SIMILAR
DISPARITIES IN TERMS OF
DEMOGRAPHIC GROUPS WHO MIGHT NOT
BE ABLE TO ACCESS TELEHEALTH.
WE WANTED TO ALSO EXPLORE
WHETHER OR NOT THERE WAS AN
ASSOCIATION WITH INFERIOR CANCER
OUTCOMES.
IT'S A LITTLE BIT CHALLENGING
SINCE THIS WAS A RETROSPECTIVE
ANALYSIS IN A SHORT FOLLOW-UP
TIME PERIOD, BUT WE WANTED TO
TRY TO LOOK AT SOME OF THE
SHORT-TERM OUTCOMES THAT MIGHT
BE IMPORTANT ON LONGER-TERM
OUTCOMES.
THINGS SUCH AS HOSPITAL VISITS,
EMERGENCY ROOM VISITS, WHICH WE
THINK ARE SIGNS THAT A PATIENT
MAY NOT BE DOING AS WELL.
SO WE LOOKED AT ALL OF OUR
PATIENT VISITS FROM MARCH 1ST TO
JULY 17, 2020.
THAT INCLUDED ABOUT 759 PATIENTS
WITH OVER 2,000 VISITS.
WE LOOKED AT EACH VISIT AS AN
ENCOUNTER, SO THERE WERE 679
IN-PERSON VISITS AND 1352
TELEHEALTH VISITS.
AND WE DEFINED A SUCCESSFUL
TELEHEALTH VISIT BASED ON
WHETHER OR NOT THE VIDEO WAS
SUCCESSFUL.
I MENTION THAT BECAUSE SOME
STUDIES WILL INCLUDE A TELEPHONE
ENCOUNTER AS A SUCCESSFUL VISIT.
WE ELECTED NOT TO INCLUDE THAT
AS THE REIMBURSEMENT MODEL AND
THE SORT OF GUIDELINES FOR
EQUIVALENT CARE WERE TO REALLY
DO VIDEO AND SO WE COUNTED
TELEPHONE VISITS AS AN
UNSUCCESSFUL ATTEMPT.
AND THE PATIENT SELECTION FOR
OUR COHORT, YOU CAN SEE WE HAD A
TOTAL OF 679 IN-PERSON VISITS
THAT WERE INCLUDED IN THE
ANALYSIS, AND ABOUT 1261
TELEHEALTH VISITS THAT WERE
INCLUDED.
AND WHEN BROKEN UP INTO
SUCCESSFUL VERSUS UNSUCCESSFUL
VIDEO VISITS, WE HAD 717
SUCCESSFUL VIDEO VISITS, AND 544
UNSUCCESSFUL VIDEO VISITS.
LARGELY, THOSE WERE
TELEPHONE-ONLY, AND THEN A
SMALLER PROPORTION OF PATIENTS
WERE NO-SHOWS OR TELEPHONE BUT
WITH A PARTNER.
SO WHAT WE IDENTIFIED, AGAIN
SIMILAR TO MANY INVESTIGATORS
INCLUDING MANY OF YOU IN THIS M
RAO, WE IDENTIFIROOM, WE IDENTI,
INSURANCE STATUS AND ACTUALLY
MARITAL STATUS WERE HIGHLY
ASSOCIATED WITH UNSUCCESSFUL
TELEHEALTH VISITS.
SO OUR PATIENT POPULATION, WHICH
IS ABOUT 30% BLACK, THEY HAD
ABOUT A 38% LOWER LIKELIHOOD OF
HAVING A SUCCESSFUL TELEHEALTH
VISIT, AND THOSE WERE MEDICARE
OR MEDICAID SIMILARLY HAD LOWER
LIKELY HOODSLIKELIHOODS OF SUCCL
TELEHEALTH VISITS.
AGAIN, THIS IS A SHORT PERIOD,
AND SO WE WERE TRYING TO
CONSIDER SOME SORT OF SURROGATES
OF SHORT TERM OUTCOMES AND THOSE
INCLUDES EMERGENCY ROOM VISITS,
DEATH, URGENT CARE VISITS AND
HOSPITALIZATIONS.
WHAT WE FOUND, AGAIN THIS WAS
NOT CAUSAL BUT RATHER HYPOTHESIS
GENERATING WAS THAT SUCCESSFUL
TELEHEALTH VISITS WERE
ASSOCIATED WITH A LOWER ODDS OF
EMERGENCY ROOM VISITS AND DEATH,
AND MIXED UNSUCCESS OR NO
SUCCESS VISITS WERE -- IF YOU
DIDN'T HAVE A SUCCESSFUL -- OR
IF YOU HAD AN UNSUCCESSFUL
TELEHEALTH VISIT, AS WELL AS
HOSPITALIZATIONS.
SO IN OUR EXPERIENCE, WE FOUND
THAT THERE WERE DISPARITIES
ASSOCIATED WITH UNSUCCESSFUL
TELEHEALTH VISITS.
AND IMPORTANTLY, THAT
UNSUCCESSFUL TELEHEALTH VISITS
MIGHT BE ASSOCIATED WITH POOR
OUTCOMES.
THEY ARE ASSOCIATED BUT WHETHER
OR NOT THEY'RE CAUSAL AND WHAT
WE CAN DO ABOUT THEM IS WHAT WE
REALLY NEED TO HAVE A BETTER
UNDERSTANDING.
SO WHERE DO WE GO FROM HERE?
SOME OF THE SUGGESTIONS AND SOME
OF THE IDEAS THAT CAME OUT OF
OUR EXPERIENCE WITH CLINICAL
TELEHEALTH WAS HOW DO WE CHOOSE
PATIENT FRIENDLY PLATFORMS.
AS YOU MENTIONED, SOMETIMES
FACETIME IS EASIER BUT THAT
MIGHT NOT BE APPROVED BY THE
HOSPITAL.
OUR PLATFORM CAN HAVE A LOT OF
CHALLENGES, EVEN AT OUR OWN
CENTER, WITH THE WIFI ACCESS.
ANOTHER AREA MIGHT BE
CONSIDERING REIMBURSEMENT FOR
TELEHEALTH VISITS AND ADVOCATING
FOR PARITY IN TYPES OF VISITS IN
TERMS OF PAYMENT.
SUPPORT FOR PATIENT EDUCATION
AND ASSISTANCE TO ACCESS
TELEHEALTH.
IN THE TBININ THE BEGINNING OF R
THOSE PATIENTS WE WERE CONCERNED
WOULDN'T BE ABLE TO ACCESS
TELEHEALTH, IT WAS VERY
ARBITRARY BUT WE DID HAVE STAFF
WHO WOULD REALLY SIT AND TRY TO
TEACH THE PATIENT WHILE THEY
WERE THERE HOW THEY COULD ACCESS
THAT WHEN THEY ALSO WENT HOME,
BUT THAT CAN BE REALLY RESOURCE
LIMITING AS WELL.
IN ADDITION, FOR EXAMPLE, WE ARE
PART OF AN EARLY PALLIATIVE CARE
STUDY IS THAT STARTED BEFORE THE
PANDEMIC WHERE PATIENTS ARE
RANDOMIZED TO TELEHEALTH BY
VIDEO VERSUS IN-PERSON
PALLIATIVE CARE, AND AS PART OF
THAT STUDY, TRAINING ON USING A
DEVICE AS WELL AS ACCESS TO A
DEVICE SO EVERYONE WHO DIDN'T
HAVE ACCESS TO A DEVICE WAS
GIVEN A DEVICE, SO SOME
INTERVENTIONS SUCH AS THAT MIGHT
BE ABLE TO HELP.
AND THEN AS MANY HAVE MENTIONED
AS WELL, ACCESS TO VIDEO AND
INTERNET DEVICES, POTENTIALLY
HAVING VIDEO HUBS OR OTHER WAYS
ADVOCATING FOR MORE BROAD
INTERNET ACCESS.
AND SO SOME OF OUR LARGE
ORGANIZATIONS SUCH AS ASCO, OUR
LARGEST CLINICAL ONCOLOGY
ORGANIZATION, HAS MADE SOME
RECOMMENDATIONS IN TERMS OF
STANDARDIZATION AND PRACTICE FOR
TELEHEALTH, TRYING TO UNDERSTAND
WHICH TYPES OF VISITS MIGHT BE
MORE LIKELY TO BE SUCCESSFUL BY
TELEHEALTH AND WHICH PATIENTS
ARE MOST APPROPRIATE, AND ALSO
TO GIVE SOME GUIDELINES AS TO
WHAT TYPES OF POSSIBLE USES FOR
TELEHEALTH MIGHT BE MOST
APPROPRIATE.
SO THINGS, FOR EXAMPLE, SUCH AS
EDUCATION MIGHT BE MORE
APPROPRIATE THAN ACTIVE
TREATMENT OR TOXICITY
MANAGEMENT, SO WE NEED TO FIGURE
SOME OF THOSE FACTORS OUT AS
WELL.
THEN OTHERS HAVE ALSO DISCUSSED
SOME POLICY RECOMMENDATIONS.
AGAIN, SORRY IT'S VERY SMALL,
BUT ADVOCATING AT A POLICY LEVEL
FOR THINGS SUCH AS MORE BROAD
ACCESS FOR INTERNET, PAYMENT
PARITY, AS WELL AS MEDICAL
LICENSURE, RECIPROCITY, FOR
EXAMPLE, MIGHT BE OTHER WAYS
THAT WE CAN INCREASE OUR ACCESS
FOR TELEHEALTH.
I KNOW DC, MARYLAND AND
VIRGINIA, FOR EXAMPLE, HAS JUST
RELEASED AN ANNOUNCEMENT THAT
THERE WILL BE RECIPROCITY FOR
MEDICAL LICENSING, AND THAT CAN
REALLY IMPACT, YOU KNOW, HOW
MANY OF OUR PATIENTS WE'RE
ACTUALLY ABLE TO REACH.
I KNOW AT HOPKINS, FOR EXAMPLE,
30% OF OUR PATIENTS COME FROM
OUT OF STATE, SO THAT MIGHT BE
AN IMPORTANT AREA AS WELL.
SO IN CONCLUSION, I THINK WE'VE
SEEN THAT TELEHEALTH CAN REDUCE
DISPARITIES IF IMPLEMENTED
THOUGHTFULLY, BUT IN SCENARIOS
WHERE WE DIDN'T HAVE ENOUGH TIME
TO DO THAT, SUCH AS COVID,
TELEHEALTH MIGHT ALSO EXACERBATE
AND HIGHLIGHT DISPARITIES THAT
ARE ALREADY EXISTING.
AND HOPEFULLY WE CAN COME UP
WITH OTHER RECOMMENDATIONS FOR
THE THOUGHTFUL IMPLEMENTATION OF
TELEHEALTH IN CANCER CARE AND
THOSE RECOMMENDATIONS ARE
EVOLVING.
THANK YOU.
>>ARE THERE ANY QUESTIONS?
SO I HAVE ONE QUESTION.
YOU MENTIONED THIS
REIMBURSEMENT.
SSO REIMBURSEMENT MAY JUST NOT E
ADD GOOSE SO IT HAS NO INCENTIVE
TO DO IT.
DOES IT --
>>CORRECT.
SO JUST TO GIVE YOU AN EXAMPLE
AT OUR HOSPITAL, TELEHEALTH
VISITS -- SO WE ARE A REGULATED
CANCER SPACE.
WE'RE CONNECT TODAY A HOSPITAL.
AND THERE ARE REIMBURSEMENTS
FOR, FOR EXAMPLE, A HOSPITAL
CHARGE WHEN PATIENTS COME IN TO
A VISIT IN PERSON.
WHEN THEY GET A TELEHEALTH
VISIT, WE CAN'T CHARGE THE
HOSPITAL CHARGE.
AND SO FOR EXAMPLE, AT OUR
MEDICAL CENTER, LAST YEAR,
TELEHEALTH VISITS ALONE
ACCOUNTED FOR A DECREASE IN OUR
BUDGET OF OVER $10 MILLION.
SO THAT HAS BEEN -- AND WHEN WE
DON'T HAVE THOSE BUDGETS, THEN
WE ALSO CAN'T HIRE STAFF, WE
CAN'T HIRE THE RESOURCES THAT WE
NEED.
AND SO THERE'S BEEN A LARGE PUSH
TO REDUCE AND ESSENTIALLY GET
RID OF TELEHEALTH VISITS, EVEN
THOUGH THAT'S BECOME REALLY THE
STANDARD OF CARE.
AUDIO VISITS PAY CENTS TO THE
DOLLAR COMPARED TO TELEHEALTH --
A VIDEO VISIT OR AN IN-PERSON.
SO WE ARE ASKED TO NOT DO AUDIO
VISITS.
BUT AGAIN, AS YOU CAN SEE, MANY
OF OUR PATIENTS CAN ONLY ACCESS
AUDIO, AND I THINK AS
CLINICIANS, WE FEEL AUDIO IS
BETTER THAN NOTHING, IF IT MEANS
NOT HAVING CONTACT WITH THE
PATIENT.
>>THANK YOU.
>>THANK YOU FOR THIS REALLY
INSIGHTFUL AND THOUGHT-PROVOKING
PRESENTATION.
I'M THINKING ABOUT THE STUDY
THAT YOU HAD PRESENTED WHERE YOU
HAD COMPARED THE UNSUCCESSFUL
VISITS TO THE SUCCESSFUL
TELEHEALTH VISITS AND ONE OF THE
THINGS THAT YOU HAD NOTED IS
THAT IN THAT KIND OF
UNSUCCESSFUL GROUP, A MAJORITY
OF THOSE WERE THE AUDIO VISITS
THAT YOU'RE ALLUDING TO RATHER
THAN NO-SHOWS.
TO ME, THAT KIND OF IMPLIES WHAT
THE CONTRAST IS, THAT THE
CONTRAST IS MORE SO LIKE
TELEPHONE VERSUS AUDIO VERSUS
HAVING A VIDEO VISIT.
SO THINKING ABOUT THAT, IT'S
PARTICULARLY STRIKING TO ME TO
SEE THOSE DISPARITIES AND
OUTCOMES THAT YOU HAVE SHOWED,
LIKE THE E.D. UTILIZATION AND
THOSE SORTS OF THINGS.
SO I'M WONDERING IF YOU COULD
SPECULATE OR HYPOTHESIZE, WHAT
WOULD BE SO FOUNDATIONALLY
DIFFERENT ABOUT AUDIO VERSUS
TELEHEALTH -- I MEAN, I KNOW YOU
CAN'T REALLY SAY THAT IT'S
CAUSAL, BUT THAT'S REALLY
INTERESTING TO ME THAT IT'S NOT
NO-SHOW VERSUS VIDEO, IT IS
MOSTLY AUDIO VERSUS.
>>SO I THINK SOME OF THE THINGS
THAT WE HYPOTHESIZE, FOR
EXAMPLE, YOU KNOW, THE MAJORITY
OF OUR PATIENTS WHO NEEDED MORE
THAN ONE FOLLOW-UP IN THAT TIME
PERIOD WERE PEOPLE ON ACTIVE
TREATMENT OR HAD RECENTLY
COMPLETED.
I THINK MANY TIMES FROM A
CLINICAL PERSPECTIVE, EVEN JUST
SEEING WHETHER OR NOT SOMEONE
CAN WALK INTO A ROOM GIVES US
ENOUGH INFORMATION TO KNOW, IS
THIS PERSON SAFE.
AND I THINK AT LEAST OUR
CLINICAL GUT OR SUSPICION IS
THAT JUST BECAUSE WE CAN GET
SOMEONE ON THE PHONE DOESN'T
NECESSARILY MEAN THAT THEY'RE
TELLING US THEY DON'T FEEL GOOD.
I THINK A LOT OF PATIENTS
OVERALL LIKE TO PUT ON A MUCH
MORE OPTIMISTIC FACE WHEN
TALKING TO THEIR ONCOLOGIST, AND
IF WE CAN'T PHYSICALLY -- I KNOW
FOR MYSELF, I CAN TELL A LOT
MORE JUST BY LOOKING AT THEM,
YOU KNOW, LOOKING AT THE COLOR
OF THEIR SKIN, LOOKING AT HOW
DEHYDRATED THEY ARE, THAT I
CAN'T NECESSARILY TELL BY VIDEO,
AND THAT'S SOMETHING THAT WE
WONDER ABOUT.
I THINK ALSO, YOU KNOW, AND
AGAIN, THIS IS NOT CAUSAL, BUT
THERE'S NO ASSOCIATION, IF
PEOPLE -- THE PEOPLE WHO ARE
ABLE TO ACCESS VIDEO, FOR
EXAMPLE, LIKE WE SAW AN
ASSOCIATION WITH MARRIED
PATIENTS.
YOU KNOW, IS THAT IMPLYING THAT
MAYBE PEOPLE HAVE MORE FAMILY
SUPPORT, MORE SUPPORT TO GET
THROUGH SIDE EFFECTS AND
TOXICITIES THAT WE CAN'T REALLY
ASSESS WHEN SOMEONE IS BUY BY
THEMSELVES.
BECAUSE ONE THING TOO IS MOST OF
THOSE TELEPHONE VISITS WAS A
PATIENT BY HIMSELF.
AND SO WE THINK THAT THAT'S PART
OF IT.
AND THAT'S ALSO ANOTHER REASON
WHY IDEALLY WE'RE HELPING
PATIENTS TO GET VIDEO ACCESS,
BUT IN TELEPHONE, AGAIN, WE
THINK IT'S PROBABLY BETTER THAN
NOTHING, BUT I THINK WE REALLY
NEED TO EMPHASIZE BEING ABLE TO
SEE OUR PATIENTS.
>>THANK YOU SO MUCH.
THIS CONCLUDES THIS SESSION.
GREAT PRESENTATION.
THANKS.
[APPLAUSE]
I'M NOW HANDING OVER THE FLOOR
TO DR. BRENDA ADJEI.
SHE'S THE CHAIR OF THE
ROUNDTABLE DISCUSSION.
>>I'M GOING TO ASK THE
PANELISTS TO PLEASE JOIN ME.
SO IF PEOPLE WANT TO STAND UP
AND STRETCH, THIS IS THE FINAL
SESSION.
NICE SESSION 15.
LUCKY NUMBER.
INTENTIONAL STRETCHES.
>>SESSION, PRESENTERS, THE
AUDIENCE, CONFERENCE ORGANIZERS,
THIS HAS REALLY BEEN A
PHENOMENAL TWO DAYS OF
PRESENTATIONS.
AND I THINK THE PANELISTS AND I,
AS WE'VE KIND OF CONVERSED OVER
THE DAY, HAVE REALLY SAID THAT A
LOT OF THESE PRESENTATIONS AND
CONVERSATIONS HAVE JUST REALLY
PROVIDED SOME RICH CONTENT FOR
DISCUSSION TODAY.
SO I WANT TO THANK THE
CONFERENCE ORGANIZERS, THE
VARIOUS CHAIRS, THE KEYNOTES,
ADVOCATES WHO SHARED THEIR CARE
EXPERIENCES, WHO PROVIDED
CONTEXT THAT INFLUENCED THEIR
JOURNEY HERE TODAY.
AS WELL AS FOR ME, HUMBLED US AS
WE THINK ABOUT THE TYPE OF
RESEARCH THAT WE DO AND PUTTING
NAMES AND FACES TO THE WORK THAT
WE DO EVERY DAY.
I WANT TO THINK ALL THE SESSIONR
PRESENTERS AND PRESENTERS FOR
SHARING YOUR RESEARCH,
PERSPECTIVES, AND ALSO YOUR
PERSEVERANCE IN THIS FIELD.
IT'S NOT EASY, AND ALL OF THE
EXPERTS HERE CAN ATTEST, IT
TAKES A WHILE TO GET TO WHERE
YOU WANT TO BE ABLE -- YOU CAN
SHARE WHAT'S HAPPENED IN THE
PAST AND WHERE YOU WANT TO MOVE
FORWARD.
AND OF COURSE THE AUDIENCE BOTH
IN PERSON AND ONLINE, I
ENCOURAGE YOU PLEASE TO USE THE
SESSION TO CONTINUE TO STAY
ENGAGED AS YOU HAVE.
SO I WANT TO SHARE JUST A QUICK
OVERVIEW OF THE SESSION.
NO SLIDES.
CONVERSATION.
I GET TO BE OPRAH MINUS RUNNING
AROUND WITH THE MIC.
AND ASK OUR SESSION PANELISTS TO
REALLY THINK ABOUT SOME CASE
EXAMPLES AS WE THINK ABOUT
RACISM AS A DRIVER OF CANCER
HEALTH DISPARITIES, WHAT DO WE
KNOW, HOW CAN OUR RESEARCH MAKE
A DIFFERENCE, AND AS WE'VE
THOUGHT ABOUT IT, WHERE DO WE GO
NEXT.
WHAT ARE SOME OF THOSE ACTIONS
ACTIONS,THOSE NEXT ACTION STEPSD
SOLUTIONS.
SO I PREPARED SOME QUESTION,
FIRST I'M BRENDA ADJEI IN THE
HEALTH DELIVERY RESEARCH PROGRAM
AND I'M GOING TO ALU O AH ALLOWR
PANELISTS TO INTRODUCE
THEMSELVES.
I'M GOING TO ASK DR. ROBERT WINN
TO INTRODUCE HIMSELF FIRST AND
I'M GOING TO ASK A SPECIFIC
QUESTION THAT WILL HELP ORIENT
YOU GUYS IN INTRODUCTIONS.
SO DR. ROBERT WINN IS DIRECTOR
OF THE BCU CANCER CENTER.
THE FIRST QUESTION THAT ALL OF
YOU WILL BE ABLE TO ANSWER IS,
EACH OF YOU BRING A SPECIFIC
VANTAGE POINT, LIVED EXPERIENCE,
LEADERSHIP AND SCIENTIFIC
PERSPECTIVE TO THE FIELD OF
CANCER DISPARITIES.
AS YOU THINK ABOUT THOSE VARIOUS
HATS THAT YOU WEAR, PLEASE SHARE
WITH US WHO YOU ARE, AND HOW
THAT HAS CONTRIBUTED TO OR
INFLUENCED THE FOCUS OF YOUR
RESEARCH PROGRAM AND THE
EVOLUTION OF YOUR RESEARCH
PROGRAM.
>>SURE.
THANK YOU.
I'M ROB WINN, CANCER CENTER
DIRECTOR, SINCE 1974.
ME RESEARCH INTEREST HAS ALWAYS
BEEN TRANS SIGNALING
TRANSDUCTION, RNA BINDING
PROTEIN AND OTHER THINGS.
BUT THE WHO I AM HAS ALWAYS BEEN
THAT STRUGGLE IN THE CRUX OF MY
EDUCATION WHEN I LEFT MY
NEIGHBORHOOD.
I AM THE PRODUCT OF -- I'M A
HEADSTART KID, VERY PROUD TO BE
A HEADSTART KID.
I AM PART OF THAT GENERATION
THAT WAS BORN TO TEENAGE MOMS
THAT ULTIMATELY WERE CONSIDERED
TO BE THROWAWAY KIDS.
WHEN PEOPLE ASK ME WHY AND WHAT
IS MY RESEARCH ABOUT, MY
RESEARCH IS NOT ABSTRACT.
MY RESEARCH IS NOT THEORETICAL.
THE RESEARCH THAT I DID AND THE
REASON WHY I'VE CHOSEN THIS PATH
OF APPLIED SCIENCE IS TO APPLY
EVERYTHING THAT I COULD LEARN TO
MAKING SURE THAT MY COMMUNITIES
ARE BETTER.
THE REALITY IS, IF PEOPLE SAY
WELL, WHO I AM, PART OF THE WHO
I AM IS REALLY -- COMES OUT OF
GETTING MY CARE FROM THE
FEDERALLY QUALIFIED HEALTH
CENTERS, PART OF IT IS
UNDERSTANDING THAT PEOPLE SAW
THINGS IN ME BEFORE I SAW IT IN
MYSELF, WHICH MEANS THAT THERE
WAS AN OBLIGATION TO THEN GIVE
BACK.
AND THE OTHER HALF OF THIS WAS
THAT LIVE -- IN MY COMMUNITY IS
THE MISSING MILLION, THE MISSING
MILLIONS OF FOLKS WHO WE DON'T
TALK ABOUT WHO LIVE IN THESE
INVISIBLE COMMUNITIES.
SO AT THE CORE I WANTED TO DO,
WHETHER IT WAS RNA BINDING
PROTEIN OR THE EVOLUTION,
EXTENSION AND ENHANCEMENT OF
SCIENCE AND UNDERSTANDING THAT
SCIENCE ALONE WITHOUT AN IMPACT
IS COOL BUT DON'T MEAN A WHOLE
LOT TO ME OR THE PEOPLE WHO I
GREW UP WITH.
SO MY SCIENCE IS REALLY ABOUT
NOT CHASING SO MUCH ACADEMIC
EXCELLENCE AS IT IS CHASING
ACADEMIC RELEVANCE.
>>I TOLD YOU.
WOW!
NEXT.
LAUREN?
>>SO I'M LAUREN MCCULLOUGH.
ASSOCIATE PROFESSOR AT EMORY
UNIVERSITY AND MEMBER OF THE
WINSHIP CANCER INSTITUTE,
SCIENTIFIC DIRECTOR O AT THE
AMERICAN CANCER SOCIETY.
I INTRODUCED MYSELF A LITTLE BIT
YESTERDAY.
AND YOU KNOW, THE WORK THAT I DO
WAS 100% BORN OUT OF WATCHING MY
FATHER BE DIAGNOSED WITH AND
STRUGGLE WITH CANCER BEFORE HE
VERY QUICKLY PASSED.
AND SITTING IN CLASSES, I WAS
PRE-MED AND SAYING, YOU KNOW,
IT'S CHEMISTRY, PHYSICS, THIS
BIOLOGY DOESN'T CAPTURE WHAT I
SEE EVERY DAY IN MY
NEIGHBORHOOD.
IT DOESN'T CAPTURE THE
EXPERIENCE THAT WE WENT THROUGH
WITH HIS DIAGNOSIS AND HIS
OUTCOME, AND WANTING TO PROVIDE
AN AVENUE FOR PEOPLE THAT LOOKED
LIKE ME, PEOPLE THAT LOOKED LIKE
HIM, TO HAVE AN EXPERIENCE OF
BETTER OUTCOMES.
SO MY WORK LARGELY FOCUSES ON
CANCER HEALTH EQUITY,
PARTICULARLY AMONG BLACK WOMEN
AND BREAST CANCER, AND ONE
PARTICULAR STUDY HAS LED ME DOWN
THIS PATH, AND IT WAS PUBLISHED
IN 2019, JNCI CANCER SPECTRUM,
WHEN WE FOUND THAT BLACK WOMEN
WHO ARE OF HIGHER SES HAD TWICE
THE LIKELIHOOD OF DYING COMPARED
TO WHITE WOMEN OF HIGHER SES.
AND WHEN YOU THINK ABOUT THAT
AND WHEN I SHARE THAT RESULT,
PEOPLE ARE SOMETIMES BAFFLED
LIKE, YOU KNOW, THESE WOMEN HAVE
THE INCOME, THEY HAVE THE
EDUCATION, THEY LIVE IN THE
NEIGHBORHOOD, WHY ARE THEY DYING
TWICE AS MUCH AS THEIR WHITE
COUNTERPARTS?
AND IT WAS JANUARY OF 2021 WHEN
I ENDED UP IN THE HOSPITAL WITH
A MAJOR MEDICAL EMERGENCY AND
ALMOST DIED BECAUSE I COULD NOT
GET THE CARE THAT I NEEDED.
AND I VERY MUCH QUICKLY REALIZED
THAT IF IT HADN'T BEEN FOR MY
POSITION AT EMORY AND THE
ABILITY TO CALL MY COLLEAGUES
THAT CAME DOWN AND GOT ME OUT OF
THE ER AND GOT ME DIAGNOSED INTO
EMERGENCY SURGERY, THE SURGEON
SAID FOUR MORE HOURS AND I
WOULDN'T HAVE MADE IT.
AND I THINK SITTING IN A
HOSPITAL FOR A WEEK BY MYSELF,
BECAUSE IT WAS COVID, I VERY,
VERY QUICKLY REALIZED THAT MY
EDUCATION, MY INCOME, MY
NEIGHBORHOOD DID NOT PROTECT ME,
DID NOT SHIELD ME FROM THE COLOR
OF MY SKIN.
AND SO THAT ISING IS SOMETHING I
CARRY WITH ME, THAT IS SOMETHING
THAT IT'S A LENS I USE IN EVERY
SINGLE STUDY THAT OUR RESEARCH
GROUP DOES, AND IT IS THE TRUTH
OF OUR PEOPLE, AND THAT SHOULD
NOT BE OUR REALITY.
>>THANK YOU SO MUCH, LAUREN,
FOR SHARING THAT.
CHANITA, WHO'S ALSO ONE OF MY
MENTORS, THANK YOU SO MUCHMENT
THE FLOOR IS YOURS.
>>GOOD AFTERNOON, EVERYONE.
GLAD TO HAVE THIS OPPORTUNITY TO
BE PART OF THE CLOSING SESSION
FOR THIS REALLY AMAZING
CONFERENCE.
I'M CHANITA HUGHES-HALBERT FROM
THE UNIVERSITY OF SOUTHERN
CALIFORNIA.
AND I'VE BEEN AT USC FOR TWO
YEARS, ABOUT SIX MONTHS ON THE
GROUND, SO A RELATIVELY NEW WEST
COAST TRANSPLANT.
I LIVED MY WHOLE LIFE ON THE
EAST COAST, SO YOU SAW ME
YAWNING UP HERE, WHICH IS I
GUESS SORT OF THE ACCLAMATION
PERIOD, BUT ONE OF THE -- TWO
STORIES, MY COLLEAGUES AND
FRIENDS ON THE PANEL TODAY
REALLY JUST REMINDED ME OF, YOU
KNOW, HOW I CAME TO BE IN THIS
SPACE.
SO I'M A BEHAVIORAL SCIENTIST.
I DID MY TRAINING AT HOWARD
UNIVERSITY AND BEFORE THAT, I
WAS AT HAMPTON UNIVERSITY.
SO REALLY STEEPED IN THE HISTORY
AND THE EXCELLENCE OF BEING
TRAINED AND EDUCATED AT AN HBCU
FOR BOTH UNDERGRAD AND GRADUATE
WORK.
I MAJORED IN PSYCHOLOGY BECAUSE
I REALLY FUNDAMENTALLY WANTED TO
UNDERSTAND WHY PEOPLE DID THE
THINGS THAT THEY DID.
AND THAT HAS ALWAYS BEEN THE
GROUNDING FOR THE WORK AND MY
MOTIVATION AND INSPIRATION,
WHICH HAS GROWN AND EVOLVED AND
MATURED BASED ON SEVERAL SEMINAL
EVENT.
I THINK I SAID THIS YESTERDAY
AND IT STILL IS TRUE, IT ALWAYS
BEEN TRUE, IS THAT I REALLY
ULTIMATELY WANT TO HELP PEOPLE
AND HELP COMMUNITIES TO NAVIGATE
THE SITUATIONS THAT THEY FIND
THEMSELVES IN.
AND THAT COMES FROM MY OWN
EXPERIENCES WATCHING FAMILY
MEMBERS HAVING TO NAVIGATE THEIR
OWN PARTICULAR HEALTHCARE
SITUATIONS, ME HAVING TO
NAVIGATE MY OWN, AND NOW AS A
MOTHER OF TWO BOYS, HAVING TO
NAVIGATE THEIRS.
SO IT IS SOMETHING THAT HAS
REALLY MOTIVATED AND INSPIRED ME
TO REALLY WORK TO THINK ABOUT
AND PARTNER WITH ALL DIFFERENT
STAKEHOLDERS AROUND HOW WE CAN
BEST POSITION AND ENABLE OUR
COMMUNITIES, OUR FAMILY MEMBERS
TO BE -- TO ADVOCATE FOR
THEMSELVES.
I ALSO HAD THE SIMILAR TYPE OF
EXPERIENCE JUST IN A DIFFERENT
CONTEXT WHERE I WAS IN THE
HOSPITAL AND HAD TO LIKE REACH
OUT TO SOME FRIENDS WHO WERE
COLLEAGUES WHO WERE IN THE
HEALTHCARE PROFESSION, AND YOU
KNOW, THAT IS A MOMENT IN TIME
WHERE I REALIZED THAT THIS ISN'T
SOMETHING THAT MOST PEOPLE HAVE
ACCESS TO.
AND THAT THAT SHOULDN'T BE THE
CASE.
BUT PEOPLE HAVE TO -- I THINK WE
HAVE TO ENABLE AND EMPOWER
INDIVIDUALS TO KNOW THAT IT IS
OKAY TO STOP SOMETHING WE DON'T
FEEL IS RIGHT.
AND TO BE THE LOUDEST VOICE IN
THE ROOM TO GET THE CARE THAT
YOU NEED WHEN YOU NEED IT.
AND I DON'T THINK WE HAVE THAT
SKILLSET YET, SO THAT'S REALLY
WHAT I'M MOTIVATED BY.
THE OTHER THING THAT IS REALLY
NEAR AND DEAR TO MY HEART IS
BEING A WITNESS TO THE SOCIAL
CIRCUMSTANCES THAT AFFECT OUR
COMMUNITIES, AND REALLY TRULY
HAVING A DESIRE TO BRING THAT
INTO THE FOREFRONT.
SO I WAS TRAINED AS A BEHAVIORAL
SCIENTIST, I PROBABLY KNOW
ENOUGH ABOUT BASIC SCIENCE
RESEARCH TO BE DANGEROUS.
BUT I THINK IT'S REALLY EXCITING
BECAUSE I DEVELOPED -- WHAT I'M
REALLY EXCITED ABOUT NOW IN MY
OWN RESEARCH IS THE OPPORTUNITY
TO BE PART OF TRANSDISCIPLINARY
TEAMS THAT REALLY ASK ME
QUESTIONS ABOUT HOW OUR SOCIAL
CIRCUMSTANCES ARE IMPACTING OUR
BIOLOGY, AND THEN VICE VERSA,
HOW OUR BIOLOGY IS AFFECTING OUR
SOCIAL CIRCUMSTANCES.
AND I THINK THOSE ARE JUST SOME
REALLY AMAZING IMPORTANT
QUESTIONS THAT WE ARE NOW EYE
EQUIEQUIPPED AND I THINK SORT OF
UNIQUELY POSITIONED TO ADDRESS.
>>SCARLET?
>>ALL RIGHT.
WOULD YOU, SOME REALLY AMAZING
STORIES, AND DEFINITELY
RESONATED WITH MY ORIGIN STORY.
SO I AM A FIRST GENERATION
IMMIGRANT.
I EMIGRATED FROM TAIWAN IN THE
EARLY 70s WHEN THE GATES
OPENED, IF YOU WILL.
I'M ALSO THE DAUGHTER OF MY
GRANDMOTHER, WHO I RECENTLY
LEARNED, THOUGH SHE'S PASSED,
WAS DIAGNOSED WITH SOME KIND OF
GI CANCER SOMETIME IN HER ADULT
LIFE.
EVERYBODY KNEW ABOUT IT BUT IT
WAS HUSH-HUSH.
SHE WAS NOT TOLD ABOUT IT.
SHE WAS NOT ALLOWED TO KNOW
ABOUT IT.
SOMEHOW THE FAMILY RALLIED
AROUND AND NAVIGATED HER THROUGH
THAT HEALTHCARE AND TREATMENT
THAT SHE NEEDED.
SOUNDS LIKE A MOVIE, RIGHT?
IT ACTUALLY HAPPENED.
I SEE A LOT OF ASIAN AMERICANS
IN THE AUDIENCE NODDING.
SO THE DISEASE IS STILL VERY
MUCH A CULTURAL STIGMA.
I'VE HAD A NUMBER OF OTHER
FAMILY MEMBERS DIAGNOSED WITH
CANCER, STILL VERY HUSH-HUSH,
AND YOU KIND OF START TO THINK
ABOUT HOW THAT CULTURAL STIGMA
IS REALLY PRESENTING AS SORT OF
INVISIBILITY OF THE BURDEN OF
THE DISEASE AMONG OUR
COMMUNITIES.
I GRAW UP LIVING IN CENTRAL AND
EASTERN WASHINGTON, SPOKANE,
WASHINGTON, ACTUALLY, WHERE
ASIAN AMERICANS AR ARE VERY MUCN
THE MINORITY.
YOU DID EVERYTHING YOU COULD TO
FIT IN, STAY INTO YOURSELF,
UNDER THE RADAR.
THEN I MOVED TO BERKELEY OF ALL
PLACES WHERE IT WAS JUST LIKE
THE COMPLETE OPPOSITE AND WAS
PUT INTO -- WAS IN AN
ENVIRONMENT WHERE WE CELEBRATED
OUR ETHNIC ORIGIN AND OUR
CULTURE AND WE SHOUTED IT LOUD
AND PROUD.
SO THIS PARTICULAR LIVED
EXPERIENCE HAS REALLY SHAPED MY
INTERESTS AND APPRECIATION FOR
THE ROLE OF STRUCTURAL AND
SOCIAL FACTORS.
I WAS PRE-MED IN COLLEGE AND
ALSO SITTING IN THESE BIOLOGY
AND CHEMISTRY CLASSES AND
PHYSICS CLASSES, WONDERED HOW DO
SOCIAL EXPERIENCES REALLY FACTOR
IN TO ALL OF THIS, HOW THIS
BEING A MEDICAL PROVIDER, HOW IS
THAT GOING TO EQUIP ONE TO DEAL
WITH THESE CIRCUMSTANCES THAT
ARE SO IMPORTANT TO INDIVIDUALS
AS THEY'RE DIAGNOSED WITH
DISEASE ARE ABLE TO LIVE A
HEALTHY LIFE, ET CETERA.
SO THAT'S WHEN I DISCOVERED -- I
TOOK MY FIRST SOCIAL EPI CLASS
AT UNIVERSITY OF MICHIGAN, WHERE
I DID MY MASTERS WITH SHERMAN
JAMES, AND IT WAS EYE OPENING.
I SAT IN THE AUDIENCE AND I JUST
WITH CRIED BECAUSE IT WAS
FINALLY -- HERE'S ACTUALLY A
FIELD THAT'S PUTTING TOGETHER
ALL THESE SORT OF VAGUE CONCEPTS
THAT I'VE BEEN SORT OF GRAPPLING
WITH IN MY LEARNING.
SO FROM THAT POINT ON, I SHIF
SHIFTED -- I PIVOTED AWAY FROM
MEDICINE TOWARDS EPIDEMIOLOGY.
I WOULD NOT SAY I'M A SOCIAL
EPIDEMIOLOGIST BY ANY MEANS, BUT
I AM VERY INTERESTED IN STUDYING
SOCIAL CAUSES AND SOCIAL
PHENOMENON AND THESE TYPES OF
LIVED EXPERIENCES AS THEY IMPACT
UPON OUR DIVERSE COMMUNITIES.
>>THANK YOU.
SO WHAT I'M GOING TO DO IS I'M
GOING TO ASK THEM A SET OF
QUESTIONS, THEY'LL GO THROUGH
AND THEN WITHIN EACH ROUND OR
AFTER EACH ROUND, WE CAN GO TO
THE AUDIENCE AND I'LL CHECK
SLIDO.
SO WE'RE GOING TO GO TO THE NEXT
SET, THAT'S JUST INTRO, AND THEN
IF PEOPLE HAVE QUESTIONS, WE'LL
GO THERE, OKAY?
SO THE NEXT QUESTION, AND WE'RE
GOING TO KIND OF GO IN A
DIFFERENT ORDER, SCARLETT,
YOU'LL START THIS ROUND.
THERE'S A SAYING WE CAN'T CHANGE
WHAT WE DON'T MEASURE.
PLEASE SHARE YOUR EXPERIENCES
ABOUT WHAT WE KNOW ABOUT RACISM
AS A DRIVER OF CANCER HEALTH
DISPARITIES, AND WHAT ARE SOME
CRITICAL RESEARCH GAPS IN TERMS
OF MEASUREMENT AND ANALYSIS?
AND IF PEOPLE COULD BUILD ON
EACH OTHER'S COMMENTS, THAT
WOULD BE GREAT.
>>YEAH, THAT'S A BIG QUESTION.
I WANT TO SORT OF SHIFT THIS
BECAUSE I THINK THERE'S
ACTUALLY -- THERE'S ANOTHER
SAYING THAT I THINK IS PERTINENT
HERE THAT I RECENTLY HEARD, AND
THAT SAYING IS THAT WHEN WE TALK
ABOUT RACIAL DISPARITIES, WE'RE
REALLY TALKING ABOUT RACISM.
BUT WHILE WE HAVE, I THINK,
DOCUMENTED AND AMPLY, YOU KNOW,
SHOWN WITH LOTS OF DATA, THAT
THERE ARE PERSISTENT CANCER
HEALTH DISPARITIES BY
RACE/ETHNICITY, WE ACTUALLY HAVE
HARDLY ANY DATA, EMPIRICAL DATA,
QUANTITATIVE DATA, QUALITATIVE
DATA, SO THERE'S A BIG DATA GAP
ESPECIALLY AT THE STRUCTURAL OR
INSTITUTIONAL LEVEL.
I GUESS YOU HEARD OVER YESTERDAY
ESPECIALLY RESEARCH ON
STRUCTURAL RACISM AND CANCER IS
ONLY RECENTLY EMERGING, AND WITH
EVERY STUDY THAT COMES OUT,
WE'RE REALLY LEARNING ABOUT THE
NUANCES AND HOW BEST TO MEASURE
STRUCTURAL AND INSTITUTIONAL
RACISM AS WELL AS RACISM
EXPERIENCE AT DIFFERENT LEVELS
AND ITS IMPACTS ACROSS DIFFERENT
POPULATIONS.
SO I THINK THAT'S A KEY GAP.
I THINK ANOTHER KEY RESEARCH GAP
IS UNDERSTANDING THE MULTILEVEL
MECHANISMS, SO WHAT'S OCCURRING
AT THE NEIGHBORHOOD LEVEL,
WHAT'S OCCURRING AT THE
INDIVIDUAL LEVEL, WHAT'S
OCCURRING WITH COMMUNITIES,
WHAT'S OCCURRING IN OUR BODIES,
BY WHICH STRUCTURAL FACTORS AND
DETERMINANTS ARE IMPACTING UPON
OUR HEALTH.
I THINK REALLY CRITICAL GAPS,
WE'RE TALKING ABOUT, WE'RE
SHIFTING, WE'RE MOVING THE
CONVERSATION TOWARDS POLICIES,
IS THE NEED TO BRIDGE THE
RESEARCH WITH POLICY
IMPLICATIONS.
FOR ME THIS IS A REALLY
UNCOMFORTABLE SPACE BECAUSE I'M
TRAINED AS A -- CLASSICALLY
TRAINED AS AN EPIDEMIOLOGIST.
I DON'T THINK I TOOK A SINGLE
POLICY CLASS.
SO I'M KIND OF LEARNING BY
DOING.
I'M REACHING OUT TO PEOPLE WHO
DO THE POLICY, AND TO UNDERSTAND
HOW ARE MY RESEARCH FINDINGS
ABLE TO BEST EFFECT A POLICY.
AND I THINK ESSENTIAL TO THIS IS
BEING ABLE TO ENGAGE WITH THESE
PEOPLE FROM THE OTHER
DISCIPLINES TO WORK WITH US TO
CONDUCT, FOR EXAMPLE, AND I HAVE
TO THANK VANESSA SHEPPARD, I
DON'T KNOW IF SHE'S IN THE
AUDIENCE, FOR INSIGHT THROUGH
OUR CONVERSATION THIS MORNING.
IT MAY BE HARD, I'VE HEARD A LOT
OF COMMENTS FROM NAYSAYERS TO
SAY WHY ARE YOU STUDYING
STRUCTURAL RACISM?
WE KNOW THAT EXISTS, WE KNOW
THAT'S AN UPSTREAK FA UPSTREAM T
WE'RE NEVER GOING TO CHANGE IT.
WELL, THE MORE EMPIRICAL
EVIDENCE, THE MORE WE CAN BUILD
A CASE, AND I THINK MODELING
THESE QUASI EXPERIMENTAL STUDIES
IS A WAY TO GET US THERE.
IF WE ARE ABLE TO CHANGE THIS
PART, THIS PARTICULAR POLICY,
THIS CAN AFFECT AND RESULT IN
THIS PARTICULAR HEALTH OUTCOME.
AND THEN THE FINAL PLUG I WILL
MAKE IS THAT, YES, YOU HEARD
ALSO FROM SOMEBODY THAT MANY OF
US IN OUR PROFESSIONAL
CAPACITIES ARE NOT ABLE TO DO
THE A WORD, ADVOCATE.
BUT AS INDIVIDUALS, WE CAN
ADVOCATE.
>>I'LL BUILD ON THAT TO SAY A
COUPLE OF THINGS.
ONE I AGREE WITH THE STATEMENT,
IT'S DIFFICULT TO ADDRESS
SOMETHING AND INTERVENE IF YOU
CAN'T MEASURE IT.
SO I DO AGREE WITH THAT.
AND I'LL JUST -- ONE OF THE
THINGS THAT I THINK ABOUT IS, I
THINK IT WAS 1999 WHEN I SAW THE
FIRST REPORT ABOUT BLACK/WHITE
DIFFERENCES IN BREAST CANCER
INCIDENCE AND MORTALITY.
AND THAT REPORT, I THINK WAS
INSTRUMENTAL BECAUSE FOR THE
FIRST TIME THAT I HA WAS MADE AE
WHEN YOU SAW THE NUMBERS AND YOU
SAW THE DIFFERENCES, AND USING
THAT AS THE FOUNDATION TO MAKE
AN ARGUMENT ABOUT WHERE AND HOW
ADDITIONAL EFFORTS NEEDED TO BE
MADE TO ADDRESS RACIAL
DIFFERENCES, AND I THINK THAT
WAS THE FIRST TIME THAT WE
STARTED THINKING ABOUT AND
HAVING A FRAMEWORK FOR
DISPARITIES.
STEEIVE THOSTEVEN THOMAS, I THIT
THE UNIVERSITY OF MARYLAND NOW,
HAS DONE REALLY NICE WORK TO
DESCRIBE SORT OF DIFFERENT
PHASES OF RESEARCH IN DISPARITY.
THE FIRST ONE BEING ABOUT
DESCRIBING THE NATURE AND
DISTRIBUTION OF THE PROBLEMS,
LOOKING AT BLACK/WHITE RACIAL
GROUP DIFFERENCES, I THINK
INDENSE IN MORTALITY ACCORDING
TO HIS WORK IS THE FIRST PHASE.
THE SECOND PHASE IS
UNDERSTANDING WHY THOSE
DISPARITIES EXIST, THE THIRD
PHASE IS DEVELOPING
INTERVENTIONS OR SOLUTIONS TO
ADDRESS THOSE DIFFERENCES AND
THEN THE FOURTH PHASE IS SORT OF
WHERE WE ARE NOW, SORT OF
BUILDING AND TRANSITIONING
EVIDENCE-BASED INTERVENTIONS
INTO POLICY AND INTO PRACTICE.
SO I THINK WE'RE SORT OF AT
PHASE ONE IN SOME WAYS WITH
STRUCTURAL RACISM.
WE KNOW IT EXISTS, I THINK TO ME
IN MY VIEW, UNDERSTANDING THE
IMPACT OF STRUCTURAL RACISM IS
WHERE I THINK WE NEED TO GO
BECAUSE I THINK THERE ARE THE
PLACE-BASED MEASURES CAN HELP US
UNDERSTAND THE HISTORICAL
EFFECT, THE HISTORICAL PRACTICE
OF STRUCTURAL RACISM, BUT WE
NEED TO UNDERSTAND, I THINK, A
LITTLE BIT MORE OF WHERE AND HOW
LIVING WITHIN A SYSTEM OF
STRUCTURAL RACISM HAS HAD ITS
IMPACT, BOTH IN TERMS OF ACCESS
TO CARE, I THINK IT'S A LITTLE
DIFFERENT THAN SAYING, YOU KNOW,
ONE GROUP HAS GREATER DIFFICULTY
RECEIVING CARE VERSUS THE OTHER.
I THINK IT'S MORE THAN
DESCRIBING THE DIFFERENCES, BUT
REALLY UNDERSTANDING WHY AND HOW
THAT IS THE CASE.
SO I THINK THE MECHANISM WORK
IS -- IF I THINK ABOUT IT AS A
DIAGRAM IS REALLY TRYING TO
UNDERSTAND THE MECHANISM.
SO I DON'T -- I THINK THAT
STRUCTURAL RACISM HAS BEEN A
REALLY IMPORTANT FRAMING FOR US
TO GUIDE OUR EFFORT IN SAYING
OKAY, THIS IS WHAT WE'RE TRYING
TO UNDERSTAND.
AND NOW I THINK -- NOW THAT WE
HAVE THE TOOLS TO SAY, OKAY,
THIS IS HOW THE IMPACT OF THE
POLICIES AND THE PRACTICES THAT
HAVE BEEN PUT IN PLACE FOR SUCH
A LONG PERIOD OF TIME,
UNDERSTAND THE IMPACT BOTH AT AN
INDIVIDUAL AND A COMMUNITY AND
AS WELL AS HEALTHCARE SYSTEMS, I
DON'T THINK WE REALLY KNOW THE
IMPACT THAT THESE POLICIES HAVE
ON HEALTHCARE SYSTEMS AND HOW IT
DRIVING THE POLICIES AROUND
WHOSE REIMBURSEMENT PRACTICES,
INSURANCE COVERAGE, THE PAYOR
DISTRIBUTION MIX, ROB CAN TALK
ABOUT THIS WITH MORE INSIGHT
THAN I PROBABLY CAN, BUT I THINK
THOSE ARE THE THINGS THAT I'M
BEING TOLD ABOUT NOW THAT
HEALTHCARE SYSTEMS ARE BEING --
ARE CONCERNED ABOUT.
BECAUSE AT THE END OF THE DAY, I
THINK IT'S -- HEALTHCARE HAS
CHANGED.
AND I'D LOVE TO HEAR FROM THE
AUDIENCE, I MEAN, IT'S A
BUSINESS NOW, AND I THINK THE
WAY WE THINK ABOUT THE BUSINESS
OF HEALTHCARE, THAT SIDE OF IT
HAS TO BE INCORPORATED INTO OUR
THOUGHT PROCESS ABOUT HOW AND
WHY THAT ALLOWS FOR RACISM AND
STRUCTURAL RACISM TO BE PART OF
THAT.
SO I'LL STOP THERE AND I'LL PASS
THE MIC TO LAUREN.
>>I DON'T HAVE A WHOLE LOT TO
ADD AND WOULD LOVE TO HEAR FROM
YOU ALL, BUT JUST TO ECHO AN
IMPORTANT POINT AT SORT OF THIS
MULTILEVEL PROCESS IN
STRUCTURES, I THINK A LOT OF US
PROBABLY BY CONVENIENCE IN DATA
ACCESSIBILITY CAN LOOK AT THINGS
FROM VERY HIGH LEVELS IN TERMS
OF STRUCTURAL RACISM, WHICH I
THINK IS REALLY IMPORTANT
BECAUSE THAT'S THE LEVEL WE'D
IDEALLY LIKE TO INTERVENE ON.
BUT I THINK OF THIS AS SORT OF A
TOP-DOWN, BOTTOM-UP APPROACH,
LIKE WE HAVE STRUCTURAL RACISM
BUT IT HAS TO BE EXPERIENCED BY
AN INDIVIDUAL, SO REALLY
UNDERSTANDING THOSE INDIVIDUAL
CONTEXTS BY WHICH, YOU KNOW,
THESE MECHANISMS ACTUALLY
MANIFEST, PARTICULARLY IN
CARCINOGENESIS, I THINK IS
REALLY IMPORTANT, AND GETTING
DATA IN THAT SORT OF MULTILEVEL
WAY, I THINK IS REALLY IMPORTANT
AND SOMETHING THAT I BELIEVE IS
LARGELY MISSING IN OUR CURRENT
DATASETS.
SO JUST UNDERSTANDING TH THAT
INDIVIDUALS EXPERIENCE RACISM
THEMSELVES, THEY ARE NESTED
WITHIN COMMUNITIES, WITHIN LARGE
HE GEOGRAPHIC AREAS, WITHIN
THESE FEDERAL POLICIES AND THEN
ALL OF THESE THINGS ARE
INTERACTING TOGETHER TO DRIVE
FOR OUTCOMES FOR RACIAL AND
ETHNIC MINORITIES.
SO I'LL STOP THERE.
>>I WAS GOING TO GET BEYOND THE
INTERSECTIONALITY TO WHAT I'M
GOING TO CALL A MASH-UP.
THIS IS, FOR ME, WHERE LIBERAL
ARTS EDUCATION AND SCIENCE MEET.
SO I'M GOING TO GIVE A GENTLE
PUSHBACK.
TO A COUPLE CONCEPTS HERE.
NOT ME.
ALBERT EINSTEIN, YOU'VE GOT AN
ARGUMENT, YOU CAN PICK IT UP
WITH HIM, SAID THAT NOT ALL
THINGS ARE GOING TO BE COUNTED
MATTER.
AND ALL THINGS THAT MATTER CAN
BE COUNTED.
SO LET'S STOP THIS RIDICULOUS
ARTIFICIAL FIGHT WE HAVE BETWEEN
SCIENCE AND HUMANITIES.
THE REALITY IS THERE ARE THINGS
TO BE LEARNED THAT WE MAY NOT
ACTUALLY HAVE IN A PARTICULAR
FORM THAT WE ACTUALLY CAN BE
MADE NOT ONLY AWARE OF BUT TO
LEARN FROM AND THEN BE ABLE TO
CREATE FRAMEWORKS THAT FOR YEARS
WE HAVE DEVISED A WAY OF DOING
IT, THEREFORE WE SAY THIS IS
WHAT WE DO.
SO THIS CRAZINESS FREQUENTLY OF
COUNTING ALL THESE THINGS, AND
THEN SAYING WELL, WE CAN'T COUNT
THEM SO WE CAN'T DO IT, IS A
POOR EXCUSE FOR DOING WHAT WE'RE
SUPPOSED TO DOBBING AS ACADEMICS
ANYWAY, WHICH IS BRINGING ALL
THESE THINGS TOGETHER FOR SOME
TRUTH.
SECOND, I DON'T BELIEVE THAT
THESE ISSUES ARE IMPOSSIBLE,
WHICH IS WHY I STOP USING THE
WORD DETERMINANT AND PICKED UP
ON USING THE WORD DRIVERS,
BECAUSE JUST LIKE WE SAID NOBODY
COULD BREAK THE FIVE MINUTE,
THEN THEY BROKE IT, BUT THIS IS
ALL B.S.
THIS IS A SOCIAL CONSTRUCT THAT
DID NOT ALWAYS EXIST THAT HAS
BEEN CREATED AS A RESULT OF --
LET'S JUST CALL IT WHAT IT WAS,
A BUSINESS PROPOSITION, RIGHT?
DURING THE SLAVE TRADE.
SO LET'S ACT AS IF WE UNDERSTAND
THAT SCIENCE DOESN'T EXIST
WITHOUT HISTORY.
IT'S WELL ROOTED WITHIN THAT
HISTORY.
SO AS I APPROACH THESE THINGS, I
ACTUALLY THINK THERE'S A
WONDERFUL OPPORTUNITY NOW TO
LOOK AT THE ISSUES OF CHASING
TRUTH BY ALSO UNDERSTANDING THAT
THE SOCIAL CONSTRUCT OF RACE HAS
CONSEQUENCES.
I'VE LIVED IT.
AS A 10-YEAR-OLD WHO HAD TO GO
THROUGH FORCED BUSING AND
EVERYTHING ELSE.
SO THAT LIVED EXPERIENCE ALSO
HAS NOW IMPACT ON MY BIOLOGY,
IMPACT ON THE EPIGENETICS,
IMPACT ON THE CHOICES THAT I
COULD MAKE OR IMPACT ON MY
MENTAL, IMPACT ON ALL THESE
THINGS.
THE WONDERFUL PART OF IT IS THAT
WITH SCIENCE, IT'S AMAZING HOW
MUCH COURAGE WE LACK.
WE SAY IT DIFFICULT.
AS IF IMMUNOTHERAPY WASN'T
DIFFICULT AND YET WE CHASED IT
FOR 120 YEARS UNTIL WE COULD
FIGURE OUT THAT WE HAD A
CHECKPOINT INHIBITOR AND
EVERYBODY SAID WELL, OF COURSE,
NOW WE'RE GOING TO MAKE $600 --
STOP PLAYING WITH ME.
THE REALITY IS, UNDERSTOOD IS
MESSY.
THAT'S WHAT WE'RE HERE FOR.
TO NOT CREATE A VISION OF
CLEARING UP THE MESS WITHIN A
FINGER SNAP, BUT TO WORK AND TO
BUILD AND TO ACTUALLY HAVE BEEN
A FOUNDATION THAT LEADS TO
EVERYTHING LIKE ALEXANDER GRAHAM
BELL WHO THOUGHT ABOUT THE FIRST
TELEPHONE AND VIDEO TOGETHER AND
THEN ULTIMATELY GETTING STEVE
JOBS WHERE WE ACTUALLY HAVE THE
IPHONES.
QUIT PLAYING WITH ME.
SO THE BIGGER PICTURE HERE IS
HOW DO WE BRING ALL OF THESE
THINGS TOGETHER, HOW DO WE BRING
THE DATA FOCUS THING, AND IT
GOOD BECAUSE, AGAIN, DATA IS
GREAT, BUT THE WAY WE'VE DONE IT
NOW, WE'VE ACTUALLY BEEN SO PURE
ABOUT OUR DATA THAT WE ACTUALLY
HAVE INVISIBLE -- AND WE EVEN
HAVE COMMUNITIES THAT WE CALL
NEGLIGIBLE COMMUNITIES, YOU SAY
WE CAN'T DO ANYTHING, THEY'RE
NEGLIGIBLE COMMUNITIES.
THINK ABOUT THAT LANGUAGE IN THE
CONTEXT OF THE PROMISE OF
SCIENCE.
WE'RE TELLING PEOPLE WHAT WE'RE
GOING TO BE DOING WITH MACHINE
LEARNING AND A.I.
WE TELL PEOPLE WHAT WE'RE GOING
TO BE DOING WITH ALL OUR BIG
DATA.
SO WE EITHER HAVE TO FIND THE
COURAGE TO ACTUALLY DEAL WITH
THE MESS AND THE MESSINESS, ONE
OF THEM BEING RACE.
I DIDN'T CREATE IT.
IT WAS CREATED.
AS A RESULT OF BEING CREATED,
WHAT YOU'RE SEEING ON THE SCREEN
THAT WE'VE DONE THIS WHOLE THING
ABOUT HEALTH DISPARITIES IS THAT
AFRICAN AMERICAN MEN, THE NUMBER
ONE IN LUNG CANCER, DEATH FROM
POOR OUTCOMES, AFRICAN AMERICAN
WOMEN, THAT'S IN PART AN
INTERESTING EXPERIMENT OF
WHERE -- ZIP CODE, PLACE AND
SPACE, THE INTERSECTIONALITY OF
THAT, BIOLOGY SHOULD ACTUALLY
EXCITE US, NO T NOT MAKE US RUNY
BECAUSE IT'S MESSY.
BY THE WAY I'M NOT HEARING
ANOTHER THING ABOUT MESS BECAUSE
WE'VE SPENT MILLIONS AND
MILLIONS OF DOLLARS FOR AMAZING
SCIENTISTS TO TALK AND UNRAVEL
MESSES INCLUDING A.I., BY THE
WAY, WHICH CLEARLY MIGHT EVEN BE
A MESS BECAUSE WE DON'T REALLY
UNDERSTAND WHAT THE HELL WE'RE
DOING WITH IT RIGHT NOW.
[LAUGHTER]
SO LET'S HAVE A DIFFERENT
CONVERSATION WHEN IT COMES TO
HEALTH EQUITY AND HEALTH
DISPARITIES OF ELEVATING THE
PROBLEMS THAT WE ARE SOLVING FOR
HUMANITY THROUGH OUR LOVE OF
SCIENCE.
[APPLAUSE]
>>SO THAT WAS ROUND ONE.
AUDIENCE, COME ON.
I'M READY, I'M READY.
>>I THINK BY NOW, EVERYBODY
KNOWS WHO I AM.
OBVIOUSLY I WORK WITH THIS
GENTLEMAN RIGHT HERE.
SO I GUESS QUESTIONS AND
COMMENTS.
YESTERDAY THIS CAME UP, YOU
KNOW, I THINK SOMEBODY FROM THE
CHAT SAID SOMETHING ABOUT WHY
ARE YOU FOCUSING ON STRUCTURAL
RACISM?
WHY ARE WE NOT STUDYING WHITE
SUPREMACY?
SO THIS CONCEPT OF THAT REALLY
IS THAT BELIEF SYSTEM THAT WE
SHOULD BE ADDRESSING, AND I
WOULD LOVE TO HEAR YOUR MUSINGS
AROUND THAT AND HOW DO WE SORT
OF DEAL WITH THAT, AND WHETHER
THAT'S CHANGEABLE.
SO WE TALK ABOUT STRUCTURAL
RACISM, YOU JUST MENTIONED,
CHANITA THAT, WELL, IT'S NOT
ABOUT CHANGING IT, IT'S ABOUT
STUDYING, BUT HOW ABOUT THEN THE
BELIEF SYSTEM?
IS THERE AN OPPORTUNITY?
THAT'S ONE.
AND THEN TWO, YOU KNOW, TO
DR. WINN, YOU KNOW, AROUND
SCIENTISTS GROWING UP AND SORT
OF BEING SCARED, RIGHT,
ENVIRONMENT OF TAKING RISKS,
THERE ARE SOME OF US THAT HAVE
THE OPPORTUNITY AND THE
PROTECTION OF WORKING WITH FOLKS
LIKE YOU THAT ALLOW US TO BE
BOLD AND BOLD IDEAS THEN CAN
CREATE BREAKTHROUGHS.
AND SO IN THE SPIRIT OF THIS
PANEL BEING ABOUT POLICY AND
CHANGING POLICIES, HOW DO WE
SORT OF ADDRESS THAT AND FIGURE
OUT HOW TO BRING THE NEXT
GENERATION OF BOLD SCIENTISTS
WIWITHIN INSTITUTIONS WHERE THEY
FEEL PROTECTED TO TAKE RISKS,
PARTICULARLY SCIENTISTS THAT
LOOK LIKE ME?
>>YOU TOOK MY LAST QUESTION,
BUT THAT WAS GOOD.
[LAUGHTER]
>>I'LL START.
I'VE BEEN REFLECTING ON MY
RESPONSE TO THE QUESTION
YESTERDAY AND ABOUT THE ISSUE
AND I GUESS -- AND THE INITIAL
QUESTION THAT WAS ASKED.
AND I'LL SAY THIS, MY PERSONAL
BELIEF IS THAT I CAN'T CHANGE
WHAT OTHER PEOPLE THINK AND WHAT
THEY BELIEVE.
AND I DON'T KNOW THAT IT IS
WORTH MY TIME AND ENERGY AND OUR
TIME AND ENERGY TO TRY TO CHANGE
SOMEONE ELSE'S BELIEFS.
THAT CAN
BE SO DEEPLY ROOTED AND HELD
THAT IT IS, YOU KNOW -- I'M SURE
ALL OF US CAN REMEMBER, YOU CAN
ONLY DO WHAT YOU CAN DO AND YOUR
BEHAVIOR AND YOUR BELIEFS, AND I
THINK THAT THAT IS A TRUISM,
THAT IS SOMETHING THAT I THINK
WE HAVE SEEN, AND I'D LOVE TO
HEAR COMMENTS, PUSHBACK ABOUT
THIS, BUT I DON'T KNOW THAT OUR
EFFORTS OR MY EFFORTS, AND I'LL
SPEAK FOR MYSELF, THAT MY
EFFORTS WOULD BE THE BEST SERVED
TO SOMEONE WHO BELIEVES THAT A
GROUP OF PEOPLE ARE DEFICIENT
FOR WHATEVER REASON, AND NOT
BECAUSE THEY HAVE ANY PROOF BUT
BECAUSE OF WHAT THEY'VE HEARD,
READ, OR MISINFORMATION, ALL OF
IT.
I MEAN, I DON'T THINK THAT
OUR -- MY ENERGY, I'LL SAY MY
ENERGY SHOULD BE USED IN THAT
WAY.
I DO THINK WE CAN CHANGE THE
CONVERSATION AND THE FOCUS BY
HAVING MORE DIVERSITY AT THE
TABLE AND HAVING MORE PEOPLE AT
THE TABLE WHO GIVE US THE
PROTECTION AND THE GUIDANCE TO
SAY THIS IS HOW WE'RE GOING TO
DO IT, WE'RE GOING TO DO IT
DIFFERENTLY, YOU CAN HAVE YOUR
BELIEFS BUT WHEN YOU COME TO
THIS TABLE, THIS IS HOW WE'RE
GOING TO FUNCTION.
OUR BELIEFS ARE, YOU KNOW -- AS
A PSYCHOLOGIST, YOU KNOW, THOSE
ARE WHAT WE BELIEVE, OUR
ATTITUDES ARE OUR ATTITUDE, AND
I THINK THERE ARE THINGS YOU CAN
MAKE SMALL CHANGES, BUT PEOPLE
ARE WHO THEY ARE.
AND I DON'T KNOW THAT WHEN IT
COMES TO RACE AND RACISM, THAT
THERE ARE THINGS THAT I THINK
THEY'RE SMALL CHANGES -- I'M
GOING TO EDIT MYSELF.
I THINK THERE ARE WAYS WE CAN
MAKE SMALL CHANGES BUT IF
SOMEONE REALLY TRULY BELIEVES,
THEN -- GO AHEAD, ROB.
>>I JUST WANTED TO JUMP IN JUST
A LITTLE BIT AND I THINK THAT
THIS IS WHERE I HAVE EMBRACED
THE NEW CHALLENGE.
AS A CANCER CENTER DIRECTOR,
WHEN I TOOK OVER, ONE OF THE
THINGS I THINK I HAD AS A -- AS
AN ISSUE, WASN'T MY ISSUE, OTHER
PEOPLE'S ISSUES, WELL, NOW THAT
HE'S AFRICAN AMERICAN, ALL HE'SS
GOING TO THINK ABOUT IS AFRICAN
AMERICANS.
SO I THOUGHT ABOUT THAT AND
THOUGHT ABOUT, BOTTOM LINE, WHAT
DID I REPRESENT AS A CANCER
CENTER DIRECTOR?
THE FUN PART WHAT YOU JUST
TALKED ABOUT, THAT GROUP OF
PEOPLE WHO ALSO ARE HOLDING ON
TO BELIEFS OR HOLDING ON TO
BEHAVIORS OR HOLDING ON TO
HEALTH BEHAVIORS THAT ALSO CAUSE
THEM IN SOME WAYS, BECAUSE WE
ALWAYS TALK ABOUT AFRICAN
AMERICANS AS BEING -- BUT THOSE
SAME FOLKS WHO ARE HOLD ON TO
THAT ACTUALLY ALSO ARE LIVING A
LIFE THAT WILL ACTUALLY HAVE
SOME IMPACT ON THEIR BIOLOGY.
MANY OF, AS WE START THINKING
ABOUT IN SOME OF THE POOR AREAS
OF PARTICULARLY FOLKS WHO HOLD
ON TO THIS.
SO ONE OF THE ISSUES WE DON'T
ALSO THINK ABOUT, WE THINK ABOUT
THIS IS WHY I THINK PLACE AND
SPACE IS IMPORTANT BECAUSE I
ALSO THINK ABOUT THOSE PEOPLE IN
KENTUCKY WHO ARE NOW BEING
UNDER -- YOU KNOW,
OVERINFLUENCED IN THEIR CLASS IN
THE CONTEXT OF EDUCATION, THEIR
CLASS IN THE CONTEXT OF ACCESS
TO NOT JOBS ALSO ARE CAUSING
THEM AND THOSE VERY SAME PEOPLE
TO HAVE OUTCOMES SIMILAR TO
MINE.
SO THE ONE THING THAT I REALLY
LOVE ABOUT WHAT WE CAN DO IN THE
CONTEXT OF BRINGING POPULATION
SCIENCE OR BRINGING ALL THESE
THINGS TO BEAR IS THAT I THINK
ALMOST EVERYONE START GETTING A
LITTLE BIT BETTER WHEN THEY CAN
SEE THAT THE SCIENCE IS
IMPACTING THEM MORE FAVORABLY,
AND WHEN THEY HAVE POLICIES THAT
ARE ACTUALLY LEADING THEM TO NOT
BE SORT OF THIS ISSUE OF AND YOU
GOT SOMETHING BECAUSE OF YOUR
COLOR AND I DIDN'T GET IT.
AND SO I DO THINK THAT THERE IS
A BIGGER THING AT HAND OF HOW DO
WE BRING POLICIES BEYOND
POLITICS, HOW DO WE BRING
POLICIES AND AFFECTING THINGS SO
WE ARE IMPACTING PLACE AND SPACE
IN THE CONTEXT OF COMMUNITIES.
>>I AGREE WITH THAT.
BUT I THINK IN TERMS OF THE
QUESTION THAT WAS ASKED
YESTERDAY IT'S LIKE SHOULDN'T WE
BE WORKING ON CHANGING WHITE
SUPREMACY BELIEFS, AND I THINK
WE CAN TRY DO THAT, BUT I THINK
PART OF -- I WAS ALSO A PRODUCT
OF FORCE BESMAN, THE THINGS THAT
WERE DONE, THE CHANGE IN POLICY
TO MAKE IT OWE CAN I FOR US TO
BE AT THE TABLE, I DON'T KNOW.
I MEAN, I THINK WE CAN BE -- I
MEAN, I THINK WE --
>>BUT THERE MAY BE -- IT MAY BE
YOU MAY NOT BE AT THAT TABLE BUT
WE MAY HAVE PEOPLE FROM THOSE
COMMUNITIES THAT MAY BE
INTERESTED IN TRYING TO ADDRESS
THOSE ISSUES.
THAT'S ALL I'M SAYING.
>>SO AGAIN, I THINK I'LL SAY
THIS AND THEN I'LL SHUT UP
BECAUSE I FEEL LIKE I'M DIGGING
MYSELF INTO A HOLE BECAUSE IT'S
ALL ABOUT YOU'RE REALLY SEEING
THE TRUE CHANITA, WHICH IS, I
GUESS, MAYBE THE GOAL FOR THIS
SESSION, WHICH IS -- I'LL
EMBRACE THAT.
I THINK THE MORE WE HAVE GREATER
DIVERSE -- I'LL SAY WHAT I SAID
YESTERDAY, THE MORE WE HAVE
GREATER DIVERSITY AROUND THE
TABLE AND WE CAN DEVELOP
POLICIES THAT ARE ACTUALLY
ENFORCEABLE, AND THEN HAVE
ACCOUNTABILITY FOR THOSE
POLICIES AND ENFORCEMENT OF
THOSE POLICIES, I THINK THAT
YES, THAT IS A STEP IN THE RIGHT
DIRECTION, BUT I THINK IN TERMS
OF CHANGING SOMEONE'S LIFE, THE
SUPREMACY PARTS OF THINGS, I
THINK THERE'S A LONG WAY TO GO,
AND I DON'T KNOW THAT THAT'S THE
BEST WAY FOR US TO SORT OF USE
OUR COLLECTIVE TIME.
>>BUT I DON'T THINK THAT THEY
ARE SEPARATE.
RIGHT?
LIKE I THINK THAT STUDY IN
STRUCTURAL RACISM, IT IS KIND OF
A FRONT TO THEM, WHICH IS WHY
THERE'S SO MUCH PUSHBACK ON
CRITICAL RACE THEORY AND THE
STUDY OF STRUCTURAL RACISM,
BECAUSE WE ARE NOW PUSHING THE
SYSTEM THAT THEY HAVE GOTTEN
VERY COMFORTAB COMFORTABLE WITH.
SO WHILE WE'RE NOT SORT OF
STUDYING THAT PER SE, I DO THINK
IN A LOT OF WAYS, WE ARE
CHALLENGING THAT THINKING.
AND CHALLENGING THE SYSTEM.
>>I'M GOING TO COME AT YOU FRAY
HAMPTON.
I'M GOING TO GET ALL FRED
HAMPTON WITH YOU.
ONE OF MY FAVORITE -- FRED
UNDERSTOOD WHAT HAPPENS IS
PEOPLE HAVE INCREDIBLE BEHAVIORS
IF THEY FELT UNHEARD.
SO FRED WAS ONE OF THE PANTHERS
WHO TALKED ABOUT POWER TO THE
PEOPLE AND UNDERSTOOD THAT EVEN
THOSE PEOPLE IN CENTRAL
ILLINOIS, THE BIKERS, HE
ACTUALLY SAID LET'S BRING THEM
IN BECAUSE WHAT ACTUALLY
HAPPENS, THEIR STRUGGLE IS
SIMILAR TO OURS AND ONCE WE CAN
GET THEM TO UNDERSTAND THAT, SO
THERE IS AN ELEMENT OF BEING
ABLE TO UNDERSTAND THAT WE ARE
ACTUALLY PROBABLY SUFFERING
BECAUSE WE DID TAKE OUR EYE OFF
THE BALL, THERE WERE PROGRAMS
AND POLICIES IN PLACE.
THIS ISSUE OF MAKING SURE THAT
ALL PEOPLE, PARTICULARLY ALL
PEOPLE OF CLASS, PARTICULARLY
POOR, BECAUSE IF I LOOK AT MY
NUMBERS, WHETHER YOU'RE POOR
WHITE OR POOR BLACK, YOU AREN'T
DOING WELL.
SOMEBODY IN MISSISSIPPI RIGHT
NOW IS DOING A WHOLE LOT LESS
WELL THAN SOMEBODY LIVING RIGHT
HERE IN D.C. , RIGHT?
PARTICULARLY IF YOU MATCH UP
YOUR POOR PEOPLE.
SO I DO THINK THAT AS WE THINK
ABOUT RACE, ETHNICITY, PLACE AND
SPACE AND CLASS, THERE IS AT
LEAST AN ELEMENT THAT SOMEBODY
MAY BE ABLE TO ADDRESS THAT
ISSUE.
>>FOR SURE, AND I KNOW THERE'S
A QUESTION OR COMMENT BUT I
THINK WHAT YOU SAID REALLY
RESONATES WITH ME ABOUT POWER TO
THE PEOPLE, AND WE HAVE TO --
AND THAT'S WHY FOR ME, I THINK
COMMUNITY ENGAGEMENT,
COMMUNITY-BASED RESEARCH REALLY
RESONATES, BECAUSE THAT IS ABOUT
US TAKING CONTROL OF OUR OWN
DESTINY AND OUR OWN IN SORT OF
DOING FOR OURSELVES WHAT I THINK
IS REALLY IMPORTANT.
I MEAN, IT'S REALLY IMPORTANT.
SO IT'S ABOUT, YOU KNOW, WE
HAVE -- WE UNDERSTAND WHERE WE
LIVE, WE UNDERSTAND HOW WE LIVE,
WE UNDERSTAND OUR NEIGHBORHOODS,
AND ALL OF US HAVE IDEAS AND
SOLUTIONS THAT WE'VE EITHER DOP
AND TRIED AND FAILED, DON AND
TRIED AND BEEN SUCCESSFUL, SO
ALL OF THOSE THINGS, YOU KNOW,
WILL CONTINUE TO MOVE FORWARD,
AND I DON'T THINK THAT WE HAVE
EMBRACED OUR COMMUNITIES IN THAT
WAY AND THE RESEARCH ENTERPRISE,
AND I THINK THAT THAT IS
WHERE -- SO I GUESS LET ME SAY
NOW THAT I'VE HAD A MOMENT TO
THINK ABOUT IT, I THINK THAT'S
WHERE I'D RATHER SPEND OUR TIME
OR I'D RATHER BE PART OF THOSE
TYPES OF INITIATIVES RATHER THAN
TRY TO CHANGE WHAT SOMEONE ELSE
THINKS, BELIEVES OR DOES, WHAT
CAN WE DO FOR OURSELVES AND HOW
CAN WE GET IT DONE?
>>THANK YOU.
I THINK MY QUESTION IS RELATED
BUT NOT AT ALL RELATED SO I'M
GOING TO ACKNOWLEDGE THAT ON
THERE.
I THINK HERE THE LAST TWO DAYS
AND JUST IN GENERAL, FOLKS WHO
ARE CANCER EQUITY RESEARCHERS
OFTEN TALK ABOUT POLICY
IMPLICATIONS OR THE NEED FOR
EQUITABLE POLICIES, THE NEED FOR
JUST POLICIES, AND THEN WE STOP.
WE DON'T WANT TO ACTUALLY HAVE
ANY SPECIFICITY BECAUSE THAT'S
NOT OUR AREA AND THERE IS A
STIGMA TO BEING AN ADVOCATE,
RIGHT, AS A SCIENTIST TO USING
YOUR OBJECTIVITY THAT I THINK IS
REAL AND MEANINGFUL, AND WE'VE
SEEN SOME SHIFTS AND SOME
CHANGES WITH THAT.
FOR EXAMPLE, OUTREACH AND
ENGAGEMENT NOW WE HAVE TO HAVE
POLICY AND ADVOCACY, DATA-DRIVEN
POLICY AND SAID V ADVOCACY IT
STRIKES ME AS VERY
UNIDIRECTIONAL, WITHOUT
NECESSARILY KNOWING AND
UNDERSTANDING THE FULL NUANCE OF
POLICY.
SO THAT'S A LARGE CONTEXT, YOU
CAN ERASE ALL OF THAT FROM YOUR
MEMORY BUT I THINK MY QUESTION
IS REALLY, HOW DO WE GET
SPECIFICITY IN OUR POLICY
IMPLICATIONS AS RESEARCHERS?
>>I'LL STAWRT START BY SAYING,S
INTERESTING BECAUSE I THINK THAT
OUR ROLE, SCIENTISTS' ROLE IN
POLICY IS TO REALLY BE AT THE
FOREFRONT OF GENERATING THE DATA
TO HELP INFORM POLICY AND THEN
TO BE ABLE TO COMMUNICATE OUR
RESULTS IN OUR ROLES AT OUR
ACADEMIC INSTITUTIONS, BUT I
THINK ACTUALLY HAS MORE POWER IF
OUR COMMUNITY CONSTITUENTS ARE
ABLE TO COMMUNICATE THOSE
RESULTS TO THE ELECTED
OFFICIALS.
BECAUSE TO BE HONEST, I MEAN,
SOME OF THE WORK THAT I WAS
DOING IN PHILADELPHIA, ONE OF
OUR PARTNERS SHARED WITH ME, YOU
KNOW, YOU CAN GO TALK TO YOUR
PEOPLE IN YOUR ROLE AS FACULTY
AT AN INSTITUTION, BUT WHAT THEY
CARE ABOUT FOR YOU IS THAT YOU
PAY TAXES.
AND THAT YOU HAVE THE ABILITY TO
HAVE IMPACT AND INFLUENCE ON
THEIR ELECTION POTENTIAL OR
RE-ELECTION POTENTIAL.
AND I'M NOT SAYING ANYTHING
NEGATIVE ABOUT PEOPLE WHO ARE IN
POLITICS, BUT I THINK THEIR
MOTIVATION AND THEIR
RESPONSIVENESS WILL BE DRIVEN BY
PEOPLE WHO ARE COMING TO THEM
AND SPEAKING AS MEMBERS OF THEIR
CONSTITUENCY.
AND THE ACADEMIC INSTITUTIONS, I
THINK, HAVE GROUPS THAT WORK
WITH THE ELECTED OFFICIALS IN
THAT CAPACITY, BUT AS CITIZENS,
YOU KNOW, WE HAVE A ROLE TO PLAY
THAT CAN BE -- THAT I DON'T KNOW
THAT -- I'VE NEVER THOUGHT ABOUT
IT AS I CAN'T SPEAK AS A
SCIENTIST ABOUT THE WORK THAT
I'M DOING BECAUSE I FEEL LIKE
THAT IS PART OF WHO I AM AS A
COMMUNITY MEMBER, AS A RESIDENT,
AS SOMEONE WHO HAS A ROLE AND A
STAKE IN WHAT HAPPENS WITH THE
POLICIES AND HOW RESOURCES ARE
ALLOCATED.
SO I DON'T SEE THAT AS BEING --
IT INTERESTING, I THINK THERE'S
BEEN A LOT OF CONCERN ABOUT I
CAN'T ADVOCATE FOR ONE THING OR
THE OTHER, BUT I FEEL LIKE I CAN
ADVOCATE AS A MEMBER OF A
COMMUNITY.
>>I WAS QUICKLY GOING TO SAY,
THIS FRAMEWORK OF AN
ACADEMICALLY RELEVANT LIFE THAT
I'M PURSUING, SCIENCE SHOULD NOT
BE AT WAR WITH COMMON SENSE.
IT JUST SIMPLY SHOULDN'T.
SCIENCE SHOULD HELP INFORM.
AND I THINK THAT THAT'S WHAT WE
DO BETTER.
I MEAN, WE ARE GOOD AT GIVING
DATA, GIVING FRAME WORKS, GIVING
CONCEPTUAL MODELS.
THAT'S OUR GIFT THAT WE BRING TO
THE TABLE.
THE REALITY IS, WE ALSO HAVE TO
HAVE, AND WHAT WE'VE LACKED, IS
SOMETIMES THE HUMILITY TO
UNDERSTAND THAT THAT HAS A
LIMIT.
AND THAT WE HAVE TO WORK THEN
WITH OTHER PEOPLE TO FILL OUT
THAT TEAM.
THE BEST EXAMPLE WAS IN CHICAGO
WHEN WE STARTED COMING UP
WITH -- WHICH AT THE TIME
EVERYBODY SAID THAT'S A STUPID
THING.
WE CAME UP WITH THIS CONCEPT
THAT WHY NOT MAKE CANCER
SNAPSHOT DATA INSTEAD OF ZIP
CODE?
WHY NOT JUST USE THE POLITICAL
DISTRICTS?
IN CHICAGO THERE WERE 50 WARDS.
WHY NOT JUST CARVE OUT THE 50
WARDS AND BE ABLE THEN TO FIGURE
OUT WHAT THE CANCER WARD WAS FOR
THAT DISTRICT?
WHY?
ONE, BECAUSE IT REALLY ALLOWED
ME TO THINK ABOUT COMMUNITY
INTERVENTIONS IN A DIFFERENT
WAY.
TWO, IT BROUGHT ON JUST NOT THE
POLITICIANS, BUT THE COMMUNITY
ASSETS THAT WERE THERE TO HAVE A
DISCUSSION NOW ABOUT HOW THIS
DATA WHICH WAS INVISIBLE TO THEM
CAN NOW HAVE A BASELINE
DISCUSSION.
WHEN YOU GET TO THE SPECIFICITY,
SOMETIMES IT'S NOT SO MUCH THE
SPECIFICITY, WE DIDN'T EVEN GET
TO FIRST BASE TO EVEN DRIVE
ANYTHING ON THE HILL TO POLICY.
SO I WOULD ACTUALLY ARGUE THAT
ONE OF THE THINGS WE SHOULD DO
AS SCIENTISTS IS THAT WE ALWAYS
HAVE BELIEVED THAT WE ARE AT
THIS MIDEVIL UNIVERSITY OF
BELONGIA -- THAT'S A DIFFERENT
SORT OF CONVERSATION FOR A
DIFFERENT TIME.
ALL OF A SUDDEN WE KIND OF FIND
RELIGION ABOUT HOW WE
ACTUALLY -- WELL, SCIENCE IN IT,
AND THAT'S USUALLY NOT DRIVEN BY
DATA, SOMETIMES IT'S DATA BUT
IT'S DRIVEN BY A PASSION.
SO QUIT, AGAIN, TALKING AND
LYING TO OURSELVES.
THERE IS, HOWEVER, A LIMIT TO
BEING ABLE TO FIEND THE BALANCE.
IN AN ACADEMICALLY RELATIVE
MODEL, YOU'RE USING THE BEST OF
US WHICH IS GENERATING DATA,
WHERE IT ACTUALLY HAS ITS
LIMITATION AND THEN BRINGING ON
OUR PARTNERS.
THAT, TO ME, SEEMS TO ME THAT IF
WE WERE TO ROLL OUT THAT MODEL,
WE MAY EVEN BE ABLE TO BUILD
MORE PUBLIC TRUST AS WE'RE
MOVING ALONG OF WHY THE SCIENCE
BENEFITS THEM AND HOW THE
SCIENCE CAN BETTER INFORM.
>>IF I CAN JUST COMMENT BRIEFLY
ON THAT COMMENT, I ACTUALLY
STRUGGLE WITH THAT, BECAUSE I
FEEL AS EPIDEMIOLOGISTS, WE ARE
TRAINED TO BE SO PRECISE.
WE COLLECT EVERY VARIABLE TO THE
EXTENT WE CAN UNDER THE SUN, WE
INCLUDE THEM IN OUR MODELS, ARE
THEY CONFOUNDERS, MEDIATORS, BUT
MY CHALLENGE IN TERMS OF HOW IS
THAT POLICY RELEVANT IS THAT
THERE'S TOO MUCH PRECISION THE
THERE.
I ACTUALLY WAS JUST INVOLVED IN
THE PAST FEW MONTHS ON HELPING
TO REWRITE THE CANCER REPORTING
REGISTRY LAW IN CALIFORNIA, AND
I THINK THEIR LAWYERS -- THE
POLICY PEOPLE ARE STRIKING,
QUESTIONING ME, WHY ARE YOU
USING THESE WORDS?
WELL, WHY DO YOU HAVE AN
EPIDEMIOLOGIST HELPING YOU WRITE
THIS LANGUAGE?
[LAUGHTER]
WE GOT TO A MI MIDDLE GROUND, BT
IT LOST A LOT OF THE PRECISION
THAT I HAD INITIALLY TRIED TO
PUT IN THERE.
SO I DON'T KNOW HOW TO NAVIGATE
THAT.
>>BUT I THINK THAT'S WHY YOU
HAVE MULTIPLE DIFFERENT TYPES OF
EXPERTISE AT THE TABLE, PAU BECE
I CERTAINLY APPRECIATE YOUR
STRUGGLE, BUT I WOULD AGREE, I
MEAN, I THINK THAT WITH ROB'S
POINT, WE CAN PROVIDE DATA AND I
THINK WHAT WE -- AND THE GROUP I
HAVEN'T SEEN HERE IS LIKE THE
COMMUNICATION EXPERTS WHO CAN
HELP US WITH COMMUNICATING AND
TRANSLATING OUR INFORMATION AND
SCIENTIFIC FINDINGS.
IT IS A SCIENCE, AND I DON'T
KNOW THAT -- I HAVEN'T SEEN THAT
DISCUSSED IN THIS ROOM, BUT IT
IS A SCIENCE.
AND I THINK THAT WHILE
THERE'S -- WHERE THERE'S A VERY
IMPORTANT ROLE FOR PRECISION,
ALSO BY BEING SO PRECISE, WHAT
DID YOU JUST SAY, WHAT DOES IT
REALLY MEAN.
AND I THINK THAT THAT IS WHERE
WE ALL MIGHT STRUGGLE A LITTLE
BIT, WHERE -- AND I'LL JUST SAY
I HAVE THE SAME STRUGGLE BECAUSE
I WANT TO BE FACTUALLY CORRECT
AND PRECISE, BUT ALSO RELEVANT,
AND I THINK WE ALL -- MANY OF US
HAVE TO FIND THAT SORT OF --
THAT BALANCE FOR OURSELVES.
>>YOU KNOW, I THINK THE ISSUE
IS, YOU KNOW, IN PART WE'RE
TRYING TO BE PRECISE BECAUSE OF
THE FACT THAT FOR A LOT OF
TOPICS IT'S SENSATIONALIZED IN
THE MEDIA, THINGS GET OUT OF
CONTROL.
THINK AS A SCIENTIFIC COMMUNITY,
WE HAVE TO FIND BETTER, MORE
EFFICIENT WAYS SORT OF TO MANAGE
THAT MESSAGE, AND I ALSO BELIEVE
THAT TO NOT INSERT OUR BIASES IS
JUST A FALLACY.
RIGHT?
WE ACKNOWLEDGE THEM, WE TRY AND
CORRECT FOR THEM, WE ARE PEOPLE.
WE ALL HAVE POSITIONS, WE ALL
HAVE PERSPECTIVES.
THAT'S A PART OF IT, RIGHT?
AND SO TO SHUT THAT PART OFF IS
NOT BEING COMPLETELY LIKE YOUR
TRUE SCIENTIFIC SELF.
AND I THINK EVEN WITH SCIENTIFIC
COMMUNICATION, ET CETERA, I
THINK WE ALL NEED TO WORK
TOGETHER AS A COMMUNITY, BUT I
THINK THE COMMUNITY MEMBERS
THEMSELVES, IF YOU WORK WITH
COMMUNITY PARTNERS, IT'S AMAZING
WHAT THEY CAN DO.
IT'S AMAZING THE REACH THAT THEY
HAVE AND SO MY SOLUTION IS
ALWAYS HAVE COMMUNITY PARTNERS
FROM THE BEGINNING, FROM
DESIGNING THE RESEARCH ALL THE
WAY THROUGH DISSEMINATION.
AND I LIKE YOUR IDEA ABOUT
THE -- YOU KNOW, MAKING THE
GEOGRAPHIC LINES RELEVANT.
IN GEORGIA, WE DO THINGS BY
COUNTY BECAUSE THAT'S WHAT
EVERYBODY DOES.
BUT WE ALSO DO IT BY PUBLIC
HEALTH DISTRICTS.
SO THAT WE CAN GO BACK TO THE
DPH AND SAY THIS DISTRICT IS
UNDERPERFORMING.
RIGHT?
AND WHAT THEY HAVE DONE WITH OUR
DATA IS THAT HAS DRIVEN THEIR
RESOURCE ALLOCATION TO THE
VARIOUS DISTRICTS, AND SO WE
THINK ABOUT THINGS THAT MAKE
SENSE FOR THE SCIENCE FOR, YOU
KNOW, AGGREGATING DATA AND META
ANALYSES AND ALL OF THIS STUFF,
BUT I THINK WHEN YOU'RE DOING
YOUR SCIENCE IN A PARTICULAR
PLACE LIKE I AM, ALSO THINKING
WHAT'S RELEVANT FOR THAT
TRANSLATION TO ACTUALLY HOLD
SOMEONE ACCOUNTABLE, RIGHT?
IF THERE'S NO ACCOUNTABLE PARTY,
NOBODY IS GOING DO ANYTHING.
>>MAKE IT NOT JUST USEFUL, BUT
MAKE IT USABLE.
>>USABLE.
>>USABLE, RIGHT.
>>
>>PLEAS SAY YOUR NAME.
>>THANK YOU FOR THIS
OPPORTUNITY.
IT'S A GREAT TALK.
SO I JUST WANT TO REMIND
EVERYBODY WE ARE ACTUALLY ALL
AFRICANS.
WE HAVE AFRICAN AS OUR ANCESTRAL
GENOME.
I AM AFRICAN, AND SO ARE ANY OF
THE BLUE-EYED BLOND HAIRED WHITE
CAUCASIAN FACULTY IN HERE.
SO I FEEL NOT ONLY THIS
IMPORTANT PROBLEM NEEDS TO BE
ADDRESSED BY YOU, THE BRILLIANT
WOMEN, WE ALMOST LOSE TWO OF
THEM DUE TO THE STRUCTURAL
RACISM IN HERE, BUT I JUST WANT
TO CALL FOR ACTION FOR THE WHITE
FACULTY OR ASIAN FACULTY OR ANY
OTHER FACULTY WHO IS NON- --
LIKE AFRICAN AMERICAN, PLEASE
JOIN THE FIGHT, WE REALLY NEED
TO ADDRESS THIS ISSUE BECAUSE
THE RACISM IS REALLY STUPID, IT
DOES NOT MAKE SENSE AT ALL,
THERE'S NO BIOLOGICAL OR GENETIC
JUSTIFICATION FOR IT.
WE ARE ALL -- WE ALL HAVE A
GREAT-GRANDMOTHER NAMED LUCY.
SO WE ALL COME FROM HER, SO
THEREFORE, THERE'S NO
DISCRIMINATING AGAINST OUR AN
SES STR STRAL GENOME, IT DOESN'T
MAKE SENSE.
SO THEREFORE, PLEASE, ALL OF US
TOGETHER WE CAN ADDRESS THIS
PROBLEM AND MAKE EVERYBODY'S
LIFE BETTER IN THIS GREAT
COUNTRY.
THE RICHEST COUNTRY IN THE
WORLD.
WE CAN DO BETTER.
WE SHOULD DO BETTER.
THANK YOU.
>>THANK YOU SO MUCH.
SO 30 SECONDS, EVERYBODY.
WHAT DO WE TELL THE NEXT
GENERATION?
30 SECONDS.
WHILE I'M TALKING, THINK ABOUT
YOUR 30 SECONDS.
>>30 SECONDS.
I GOT ONE FOR YOU.
IT'S THE SAME THING THAT WE
ACTUALLY SHOULD BE ENCOURAGING
OUR YOUNG PEOPLE, I JUST HEARD
THIS, INNOVATION IS REALLY
SEEING WHAT EVERYBODY ELSE SEES,
BUT THINKING ABOUT IT
DIFFERENTLY.
WHEN IT COMES TO HEALTH
DISPARITIES, LET'S THINK ABOUT
THIS DIFFERENT, UNLESS THAT --
NOT ELEVATED BUT LET'S GET REAL
WITH WHAT WE JUST HEARD ABOUT
ALL OF US BY EMBRACING THIS AS A
SCIENCE, WE CAN HELP OUT NOT
JUST ME, BUT ALL OF US.
>>THANK YOU.
LAUREN?
>>SO I THINK COORDINATION,
COOPERATION AND COLLABORATION.
YOU KNOW, AS SCIENTISTS,
ESPECIALLY IN ACADEMIC CENTERS,
A LOT OF WHAT WE DO COMES FROM
WHAT NIH PUTS OUT THERE.
RIGHT?
SO WE NEED -- WE NEED THE RFAs
TO DO THE WORK THAT WE SAY IS
IMPORTANT, AND THEN AS A
SCIENTIFIC COMMUNITY, I THINK WE
JUST OPERATE IN SILOS JUST WAY
TOO MUCH.
THERE NEEDS TO BE MORE
COORDINATION, MORE
COLLABORATION, AMONG US, AND
WITH THE COMMUNITY MEMBERS.
IF THEY'RE NOT A PART OF YOUR
RESEARCH, THEN YOU ARE NOT DOING
RESEARCH FOR THEM.
SO I JUST -- EVERY RESEARCH
STUDY NEEDS TO HAVE SOMEONE THAT
LOOKS LIKE THE PEOPLE YOU ARE
STUDYING, WITH THOSE
EXPERIENCES.
>>THANK YOU FOR DRIVING THAT
HOME TOO.
>>I MEAN, DITTO.
[LAUGHTER ?C]
AND I THINK DR. TANG SAID
EVERYTHING I WOULD HAVE SAID.
>>AWESOME.
THANK YOU.
>>I THINK THAT WE ARE ACTUALLY
SO MUCH FARTHER DOWN THAT ROAD
TODAY, THANKS TO PEOPLE HERE AT
THIS TABLE FOR HELPING TO OPEN
THAT GATE FOR US AND OUR NEXT
GENERATION, AND A THINK A BIG
PART OF THAT IS HAVING PEOPLE IN
LEADERSHIP WHO LOOK LIKE US BUT
ALSO APPRECIATE AND ARE WILLING
TO ADVOCATE AND PUT THEIR, YOU
KNOW -- THEIR VOICES TO ADVOCATE
FOR THESE ISSUES.
SO I THINK TO THE EXTENT THAT WE
CAN ALSO ALL PUT OUR EFFORTS
BEHIND MAKING SURE THE PEOPLE IN
LEADERSHIP, WHATEVER TYPE OF
LEADERSHIP FORUM YOU'RE THINKING
ABOUT, PEOPLE IN LEADERSHIP
ESPOUSE THESE VALUES AND WILL
ADVOCATE FOR THESE ISSUES TO
KEEP THAT GATE OPEN.
>>COULD I REAL QUICK SAY LET ME
TAKE THAT FURTHER IN OUR
LEADERSHIP, LET'S TALK ABOUT THE
NIH.
I'M GOING TO TALK ABOUT THE NIH
FOR A SECOND.
HERE HERE'S THE DEAL.
WE HAVE TWO MISSIONS.
NOT MY MISSIONS.
WRITTEN TO DISCOVER NEW
FUNDAMENTAL KNOWLEDGE, BUT
SOMEHOW THAT SECOND SENTENCE
ABOUT HEALTH OUTCOME GOT
DROPPED.
IF SOMEBODY ASKED ME ABOUT WHAT
THE NIH STOOD FOR, AROUND BASIC
AND DISCOVERY, HI NO IDEA THAT
WRITTEN IN THE ORIGINAL MISSION
STATEMENT IS ALSO AN EQUAL
EMPHASIS ON HEALTH OUTCOMES.
LET US ALL LIVE TO THE MISSION
THAT WAS ACTUALLY STATED, I
THINK WE'RE GOING TO BE ALL
RIGHT.
>>AND I WILL JUST -- I NOW
THOUGHT OF WHAT I WANT TO SAY.
[LAUGHTER]
>>THERE'S NO QUESTION, RACISM
IS A DRIVER OF MANY HEALTH
DISPARITIES, AND WE COULD GO ON
BUT WE HAVE TO CONCLUDE.
WE HAVE ONE MORE SPEAKER.
FIRST APPLAUSE TO ALL OF THEM,
OKAY?
[APPLAUSE]
I'M GOING TO SHIFT TO DR. GLENN
MERLINO, PLEASE STAY.
MR. MERLINO, HOW THE INTRAMURAL
RESEARCH PROGRAM --
>>ALL RIGHT.
HI.
SO THANKS FOR STAYING.
FIRST I'D LIKE TO REALLY, ON
BEHALF OF THOMAS AND ALL THE
LEADERSHIP, WE HEARD ABOUT HOW
IMPORTANT THAT S TO THANK YOU
ALL FOR HAVING ME COME AND SAY
SOME CLOSING REMARKS.
AND I'D ALSO LIKE TO SAY THIS
HAS BEEN A TERRIFIC SYMPOSIUM.
THIS LAST DISCUSSION WAS
AMAZING.
AND I COULD HAVE HAD IT GO ON,
SORRY, BECAUSE IT WAS REALLY
VALUABLE.
LET ME START WITH MANY THANKS.
I'D LIKE TO THANK THE ORGANIZING
COMMITTEE, STEFAN FOR INVITING
ME TO COME AND TALK, BUT THIS
HAS BEEN AN AMAZING GROUP AND
THEY REALLY HAVE PUT TOGETHER A
WONDERFUL PROGRAM, AND ALSO FOR
THE CONFERENCE, PLANNING STAFF,
JULIA AND CHRIS RIVERA AND THE
I.T. TEAM FOR MAKING THIS ALL
HAPPEN.
SO LET GIVE A ROUND OF APPLAUSE
TO EVERYBODY.
[APPLAUSE]
I DO WANT TO NOTE THAT THIS HAS
BEEN SUPPORTED BY A NUMBER OF
DIFFERENT INTERESTS AND WORKING
GROUPS WHICH HAS REALLY HELPED
MAKE IT HAPPEN.
TO I JUST WANTED TO SAY A FEW
WORD.
I WANTED TO BASICALLY ASSURE YOU
THAT CCR LEADERSHIP IS
ABSOLUTELY COMMITTED TO DEIA AND
INCLUSION.
WE WANT TO MAKE A FULLY
EQUITABLE WORK ENVIRONMENT.
WE WANT TO HAVE A DIVERSE CANCER
WORKFORCE, IT LOOKS LIKE THE
UNITED STATES.
WE WANT TO IMPROVE HEALTH
DISPARITIES RESEARCH THROUGHOUT
AND PATIENT REPRESENTATION IN
CLINICAL TRIALS.
SO HOW WILL WE DO THIS?
WE'RE GOING TO TRY TO USE A
NUMBER OF DIFFERENT METHODS.
OF COURSE WE WANT TO RECRUIT
TALENTED PEOPLE INTO THE PROGRAM
THAT WILL BE CREATING AND
EXPANDING, WE'D LIKE TO ALSO GET
MORE INTO EDUCATION SO PEOPLE
REALLY UNDERSTAND WHAT'S GOING
ON.
COLLABORATION AND ADD MORE
RESOURCES.
AND YOU KNOW, THE COLLABORATION
IS GOING TO GO FULL SPEED ALL
AROUND, THAT'S THE WAY IT WILL
WORK.
SO I WANT TO TELL YOU A LITTLE
BIT ABOUT THE EFFORTS.
WE TALKED ABOUT NIH, NIH HAS ITS
OWN EFFORTS.
LET ME JUST FOCUS FIRST ON
NCI-WIDE.
WE HAD NED SHARPLESS WHEN HE WAS
HERE DEVELOP AN EQUITY AND
INCLUSION PROGRAM.
IT'S NOW CHAIRED BY MONICA
BERTAGNOLLI, WHO IS OF COURSE
THE NCI DIRECTOR NOW AND
PAULETTE GRAY IS THE CO-CHAIR,
AND THE MEMBERS OF THAT
COMMITTEE ARE ACTUALLY REALLY A
STAR-STUDDED GROUP.
AND UNDER THAT ARE FIVE HARD
WORKING GROUPS, AND THEY
REPRESENT ALL THE THINGS THAT WE
ALL THINK ARE IMPORTANT IN TERMS
OF HEALTH DISPARITIES, DEIA AND
SCIENCE.
SO THE FIRST ONE HAS TO DO WITH
ENHANCING RESEARCH TO ADDRESS
EXACTLY WHAT THIS WHOLE
SYMPOSIUM WAS ON WITH HEALTH
DISPARITIES.
A SECOND ONE HAS TO DO WITH
REALLY MAKING THE PEOPLE AND THE
THOUGHTS AND EVERYTHING THAT
GOES ON IN CANCER RESEARCH LOOK
LIKE, AGAIN, THE UNITED STATES.
THE THIRD ONE IS REALLY
PROMOTING MORE INTRAFACING, FOR
INTRAMURAL PEOPLE, EQUITABLE AND
INCLUES SIEVE COMMUNITY.
WE'D LIKE TO IMPROVE THE CULTURE
HERE AND MAKE IT SOMETHING THAT
EVERYBODY IN THE COUNTRY CAN
LOOK AT AND BE PROUD.
ANOTHER GROUP HAS TO DO WITH
SYSTEMATIC TRACKING AND
EVALUATION.
WE JUST TALKED ABOUT THIS.
WE WANT TO COUNT THINGS SO WE
KNOW WE'RE DOING IT RIGHT.
EVEN IF SOME PEOPLE THINK THAT'S
NOT ENOUGH, WHICH IT'S NOT.
AND THEN THE OTHER WORKING GROUP
DEALS WITH COMMUNICATION,
OUTREACH AND JUST MAKING SURE
EVERYBODY KNOWS WHAT'S GOING ON.
WITHIN CCR ITSELF, WE TRY TO DO
THINGS IN THREE BUCKETS.
WE HAVE FEWER BUCKETS.
THE FIRST ONE HAS TO DO WITH
DIVERSE -- BASICALLY DEIA AND
TRYING TO CREATE THAT KIND OF
ENVIRONMENT.
WE WANT TO ENHANCE
COMMUNICATION, WE WANT TO MAKE
RESOURCES AND TRAINING IMPROVED
AND AVAILABLE TO ALL STAFF, AND
IMPORTANTLY, WE WANT TO HOLD THE
STAFF ACCOUNTABLE, AND THAT'S
REALLY A HARD THING, A VERY
DIFFICULT THING, AND WE WANT TO
DO IT IN TWO WAYS, AS PART OF
OUR OWN SITE VISITS, WHICH YOU
KNOW, AS MOST OF YOU HERE KNOW
AND EXTRAMURAL PEOPLE SHOULD
HAVE HEARD ABOUT, THERE IS
SECTIONS NOW WHERE YOU HAVE TO
WRITE DOWN EXACTLY WHAT YOU ARE
DOING TO DEAL WITH DEA AND TO
IMPROVE THE CULTURE IN YOUR LAB.
THE SECOND ONE IS TO DIVERSIFY
THE WORKFORCE, AND WE'VE TALKED
ABOUT THAT.
WE WANT TO EXPAND THE
REPRESENTATION OF
UNDERREPRESENTED GROUPS AND THE
TRAINING PROGRAMS.
I CURE WOULD BE THE JEWEL IN
THAT AND I'LL COME TO THAT IN A
SECOND.
WE WANT TO PROVIDE SUPPLEMENTARY
POSITIONS FOR UNDERREPRESENTED
GROUPS.
GIVE THEM EQUAL OPPORTUNITIES TO
HAVE THE EXPERIENCE OF BEING AT
THE NIH AND THE CCR AND TO DO
RESEARCH HERE.
AND TO INTENSIFY RESEARCH
OUTREACH, EXCUSE ME, FOR
TRAINEES AND FACULTY
RECRUITMENT.
AND THE THIRD ONE REALLY DEALS
WITH, AGAIN, WITH THE SYMPOSIUM
HERE, HEALTH DISPARITIES
RESEARCH, WE HAVE CREATED THE
STEERING COMMITTEE TO COORDINATE
THE EFFORTS OF THIS REGARD, AND
ALSO TO HAVE MORE ACCESS IN
TERMS OF OUR TRIALS AT THE
CLINICAL CENTER.
BOTH DCG AND CCR BOTH HAVE NEW
FELLOWSHIPS AND GRANT
MECHANISMS, AND WE'D LIKE TO
ENHANCE OUR RECRUITMENT OF
HEALTHCARE DELIVERY AND CANCER
DISPARITIES PROGRAM, LEADERSHIP
AND FACULTY.
SO THE TRAINING HERE RUNS THE
GAMUT.
WE HAVE FROM SOUP TO NUTS.
WE HAVE SOME VERY NICE HIGH
SCHOOL PROGRAMS.
THIS ONE, THE WERNER KERSTEN IS
IN FREDERICK.
IT'S ACTUALLY WONDERFUL.
AND THEN WHEN YOU GET TO
COLLEGE, MOST OF WHAT WE HAVE
HERE IS THE SIRM INTERN PROGRAM.
WHEN YOU GRADUATE, THERE'S AN
OPPORTUNITY FOR POSTBACS TO COME
AND WE HAVE A VERY STRONG
POSTBAC PROGRAM AND ALSO
GRADUATE STUDENTS, WE CAN'T GIVE
A DEGREE, CAN'T CONFER A DEGREE
HERE, BUT IN CONCERT WITH LOCAL
COMMUNITIES, INSTITUTIONS LIKE
GEORGE WASHINGTON, GEORGETOWN,
HOPKINS AND MARYLAND, PEOPLE
COME HERE TO DO THEIR TRAINING.
AND THEN AFTER THAT, OF COURSE,
THERE'S POSTDOCTORAL
FELLOWSHIPS, CLINICAL
FELLOWSHIPS AND THEN RESEARCH
FELLOWS.
AND THE ICURE PROGRAM REALLY
ENEXANSES FROM POSTBACS THROUGH
POSTDOCS.
THE ICURE PROGRAM REALLY TAKES
OFF FROM THE CURE PROGRAM, WHICH
IS EXTRAMURAL, IT'S OVER 20
YEARS OLD, IT'S AN AMAZING
SUCCESS, AND WHAT WE'VE TRIED TO
DO IN THE INTRAMURAL PROGRAM IS
ENHANCE RESEARCH WORKFORCE
DIVERSITY THROUGH THE I CURE
GOALS, PROMOTE CAREER
ADVANCEMENT OF THE SCHOLARS AND
FOSTER AN INCLUSIVE ENVIRONMENT
IN THE NCI COMMUNITY.
AND WE'VE RECENTLY INCREASED THE
I CURE PROGRAM, AND WE HOPE TO
DO SO MORE IN THE FUTURE.
IF YOU HAVE ANY QUESTIONS ABOUT
I CURE, YOU CAN CONTACT DRS.
ADAMS AND CALZOLA ABOUT THAT.
IN IS JTHIS IS JUST A SNAPSHOT W
THE TRAINING GOES BROADLY.
WE HAVE ALL DIFFERENT TYPES FOR
WHAT POSITION YOU'RE IN
CURRENTLY, YOU CAN BE
COMPETITIVE AND YOU CAN JOIN.
THEY HAVE DIFFERENT START DATES
FOR DIFFERENT TIMES AND
DIFFERENT DURATIONS.
IF YOU HAVE MORE QUESTIONS, YOU
CAN GO TO THESE SITES.
FURTHERMORE, THERE'S ADDITIONAL
RESOURCES HERE TO HELP IN MANY
DIFFERENT WAYS.
ONE TO ONE SESSIONS WITH A
TRAINING DIRECTOR IS AVAILABLE.
THERE'S LEADERSHIP PROGRAMS.
WE WANT TO GET PEOPLE INTO
LEADERSHIP WHO DON'T -- AND
HAVEN'T HAD THE OPPORTUNITY UP
TO NOW.
IT'S A MAJOR, MAJOR EFFORT ON
OUR PART.
AND FELLOW-LED GROUPS AND
COMMUNITY BUILDING ACTIVITIES
ARE AVAILABLE, AND CAREER
EXPLORATION OPPORTUNITIES.
SO LET ME JUST SORT OF CLOSE
WITH THE OPPORTUNITIES HERE.
THIS IS A LITTLE BIT OF THE
HIGHER LEVEL.
THE SENIOR INVESTIGATOR ARE THE
TENURED INVESTIGATORS, THE PIs
HERE.
PACBASIC AND TRANSLATIONAL CANCR
RESEARCH, OF COURSE ALSO
CLINICAL.
THE MAJOR MECHANISM THAT WE
BRING ON NEW TENURE TRACKS IS
THE STAT PLAN.
MAN, A VERY PRESTIGIOUS
AND VERY COMPETITIVE PROGRAM
THAT TAKES ALL KINDS OF
APPLICATIONS.
PEOPLE WHO COME INTO THIS
PROGRAM GET A LITTLE BIT MORE TO
GET STARTED.
ON THE CLINICAL SIDE, WE HAVE
LASKER CLINICAL RESEARCH
SCHOLARS AND A PHYSICIAN
SCIENTIST EARLY INVESTIGATOR
PROGRAM OR THE PEE PROGRAM.
IN THE CLINICAL SIDE WE HAVE A
VERY NICE PIPELINE FOR PEOPLE
AND YOU CAN GET IN AT EVERY
DIFFERENT LESM AND PROGRESS.
THE PEOPLE WHO ARE IN THIS
PIPELINE STAY HERE BECAUSE IT
REALLY IS A TERRIFIC PLACE TO
WORK.
AND THEN FINALLY, WHEN HANNAH
VALANTINE WAS HERE, SHE WENT
BACK TO STANFORD A FEW YEARS
AGO, SHE ESTABLISHED THE
DISTINGUISHED SCHOLARS PROGRAM
AND THE INVESTIGATORS HERE
MOSTLY ARE COMING FROM THE
STATMAN SEARCH, WHEN YOU COME IN
YOU'RE SUCCESSFUL AND YOU WORK
AT THE NCI OR ANY OTHER
INSTITUTE AT THE NIH, YOU HAVE A
DE "I" STATEMENT THAT YOU MAKE,
AND PEOPLE WHO ARE REALLY -- I
MEAN, NOT LIKE I HAD TWO
STUDENTS ONCE, THIS IS WHAT
THEY'RE PASSIONATE ABOUT, THIS
IS HOW THEY'VE LIVED THEIR LIFE
AND THIS IS WHAT THEY WANT TO DO
IN THE FUTURE.
THESE PEOPLE COMPETE TO GET INTO
THIS PROGRAM AND USUALLY 10 TO
12 PEOPLE GET IN, AND THEY ACT
AS A COHORT AND THEY GO
THROUGHOUT THEIR EARLY CAREER AS
A COHORT, THEY HAVE VERY SIMILAR
ACTIVITY OR IDENTICAL ACTIVITIES
IN SOME CASES, AND THEY STAY
TOGETHER.
IT FORMS A NETWORK REALLY FOR
THEIR WHOLE CAREER.
SO WE'RE VERY PROUD OF THAT
PROGRAM AND IT'S ACTUALLY HELPED
ON OUR RECRUITMENT TREMENDOUSLY
FOR UNDERGRADUATE -- SORRY --
UNDERREPRESENTED GROUPS.
SO LET ME CLOSE AND SAY THAT I
CAN'T WAIT FOR THE FIFTH
SYMPOSIUM.
I THINK THIS WAS TREMENDOUS.
STEFAN, EVERYBODY INVOLVED, AND
I THINK THIS HAS BEEN A GREAT
TWO DAYS.
I WANT TO REMIND EVERYBODY THAT
WE THINK THAT A MAJOR GOAL IS TO
CROSS-COLLABORATE.
WE DO IT WITHIN NCI, DIFFERENT
DIVISIONS WITHIN NIH INSTITUTES
AND THERE'S A LOT OF THEM.
AND THEN WITH OUR PARTNERS IN
THE EXTRAMURAL COMMUNITY.
SO A BIG THANK YOU TO THE
KEYNOTES, TO ALL THE SPEAKERS,
TO THE CHAIRS, TO THE
PARTICIPANTS, I'D LIKE TO
PARTICULARLY THANK THE
EXTRAMURAL PEOPLE WHO'VE COME,
GIVEN TALKS AND PARTICIPATED,
AND A BIG SHOUT OUT FOR THE
CANCER SURVIVORS THAT ARE HERE
TODAY.
SO AGAIN, LET ME AGAIN THANK
EVERYBODY.
[APPLAUSE]