MY NAME IS AMY WILLIAMS,
DIRECTOR OF THE ADVOCACY OFFICE.
I KNOW ALL OF YOU GUYS KNOW
THAT.
BUT I WANTED TO WELCOME YOU TO
THE 91ST MEETING OF THE NCRA.
AS ALWAYS WE ARE VERY HAPPY TO
HAVE YOU HERE.
WE ALSO HAVE SEVERAL BOARD
MEMBERS JOINING US VIRTUALLY FOR
VARIOUS REASONS, SO WELCOME.
I'M GOING TO TURN IT OVER TO
ANNIE IN JUST A MINUTE TO GET US
STARTED BUT I DID WANT TO THANK
YOU AND THE ADVOCACY OFFICE
STAFF FOR THE WORK THAT YOU'VE
DONE IN PUTTING THIS MEET
TOGETHER HERE.
I THINK WE HAVE SOME REALLY
TERRIFIC CONTENT TO WALK THROUGH
AND DISCUSS TODAY.
WE ARE JOINED BY OUR NEW
DIRECTOR, DR. RATHNELL.
WE'RE ALSO GOING TO HAVE A
DISCUSSION ABOUT -- WE'LL HAVE A
LEG UPDATE AS ALWAYS AND AFTER
LUNCH WE'LL BE TALKING A LITTLE
BIT ABOUT THE NATIONAL CANCER
PLAN.
AS WELL AS AN UPDATE ON THE AI
EFFORT.
SO A PRETTY FULL AND TIMELY
AGENDA FOR US.
AGAIN IT'S NICE TO SEE YOUR
FACES.
I KNOW YOU GUYS WEAR MANY HATS
AND DO A VARIETY OF DIFFERENT
THINGS ON BEHALF OF CANCER
PATIENTS.
IT'S ALWAYS GREAT TO HAVE YOU
HERE [INAUDIBLE].
>> THANK YOU, AMY.
FOR ALL YOUR HARD WORK IN
GETTING THIS MEETING PULLED
TOGETHER.
TO MY COLLEAGUES ON THE BOARD, I
THANK YOU FOR YOUR EFFORTS TO BE
HERE AND I WELCOME AS WELL OUR
COLLEAGUES ONLINE.
SO TO CALL THE MEETING TO ORDER,
I NEED TO READ THE OPENING
STATEMENT.
AS COMMITTEE MEMBERS, I WANT TO
REMIND YOU THAT YOU MUST ABSENT
YOURSELF DURING SPECIFIC
DISCUSSIONS WHENEVER YOUR
PARTICIPATION AND DELIBERATION
ON A PARTICULAR PRODUCT,
PROGRAM, OR OTHER SPECIFIC
MATTER WOULD CONSTITUTE A
CONFLICT OF INTEREST OR CREATE
THE APPEARANCE OF ONE.
IT IS INCUMBENT UPON YOU TO
ADVISE THE EXECUTIVE SECRETARY
AND ABSTAIN FROM ANY
PARTICIPATION AND DISCUSSION OR
ACTION REGARDING THAT MATTER.
IN LIGHT OF THE CURRENT POLICIES
GOVERNING CONFLICT OF INTEREST
BASED ON FINANCIAL HOLDING OF
SPECIAL GOVERNMENT EMPLOYEES,
WHICH INCLUDE ALL THE MEMBERS OF
THIS COMMITTEE, WE MUST DEPEND
ON YOU TO VOLUNTARILY ABSENT
YOURSELF DURING ANY AND ALL
DISCUSSION OF MATTERS THAT WOULD
CONCEIVABLY IMPACT THE STATUS OF
THOSE HOLDINGS.
WE TRUST YOUR JUDGMENT IN THESE
INSTANCES.
BY LAW, A QUORUM OF BOARD
MEMBERS IS REQUIRED FOR EACH
INSTANCE IN WHICH A VOTE OCCURS
IN AN OPEN SESSION.
DURING THIS MEETING, A MINIMUM
OF EIGHT APPOINTED MEMBERS MUST
BE PRESENT TO VOICE THEIR VOTES.
NEW MEMBERS WHO ARE NOT CURRENT
MEMBERS OF ANOTHER NCI ADVISORY
BOARD ARE NOT VOTING UNTIL THEY
HAVE BEEN CLEARED BY THE NCI
ETHICS OFFICE AND OFFICE OF
HUMAN RESOURCES.
NOW THE PUBLIC COMMENT
STATEMENT.
MEMBERS OF THE PUBLIC WHO MAY
WISH TO EXPRESS VIEWS REGARDING
ANY ITEMS DISCUSSED DURING THIS
MEETING MAY DO SO BY WRITING AMY
WILLIAMS, EXECUTIVE SECRETARY,
WITHIN 10 DAYS OF THE MEETING.
STATEMENTS BY MEMBERS OF THE
PUBLIC WILL RECEIVE CAREFUL
CONSIDERATION.
JUST WANT TO REMIND THE BOARD TO
NOT ONLY TURN ON THE MICS BUT
TUL TOWARDS YOU SO YOUR REMARKS
CAN BE RECORDED FOR THE MINUTES
LATER ON.
BEFORE WE WELCOME DR. RATHMELL,
I WOULD LIKE TO HAVE THE BOARD
INTRODUCE THEMSELVES.
WE'RE JUST ASKING FOR A VERY
QUICK YOUR NAME, YOUR
ORGANIZATION, CANCER AREA, AND
WHERE YOU'RE FROM.
SO IF WE CAN START ON THIS END
WITH NATHANIEL.
>> PLEASED TO MEET YOU.
GOOD TO SEE EVERYONE ELSE.
I'M NATHANIEL FERRE, HUNTSMAN
CANCER INSTITUTE, UNIVERSITY OF
UTAH.
>> I'M -- PROSTATE CANCER.
[INAUDIBLE]
>> HAPPY TO BE HERE.
MY NAME IS NICOLE WILLMARTH,
CHIEF MISSION OFFICER FOR THE
AMERICAN BRAIN TUMOR
ASSOCIATION, I'M IN CHICAGO,
REALLY DEDICATE MY TIME TO
WORKING ON RESEARCH TO SUPPORT
PATIENTS AND THEIR FAMILIES.
>> I'M KEVIN STEMBERGER FROM
FARMINGTON HILLS, MICHIGAN.
ADVOCACY WORK -- SCIENTIFIC SI
SIDE -- [INAUDIBLE] PLEASURE.
>> -- HERE AT NCI -- NEW YORK.
>> HI, KRISTEN SANTIAGO.
LUNPERSONALLY I HAD KIDNEY CANCR
>> GOOD MORNING, MY NAME IS LEE
JONES.
I HAVE A CAREER IN THE FEDERAL
GOVERNMENT.
I'M A STAGE IV COLON CANCER
SURVIVOR.
THIS MONTH IT'S 20 YEARS SINCE I
WAS DIAGNOSED.
AND I DO WORK WITH A NUMBER OF
ORGANIZATIONS INCLUDING NCI SSH
IRB WHICH I'M MISSING A MEETING
TODAY.
>> BRITTANY, COULD YOU INTRODUCE
YOURSELF, PLEASE?
>> HI.
I'M BRITTANY MCKELVEY.
CHILDHOOD CANCER SURVIVOR, I'M A
DIRECTOR OF REGULATORY AFFAIRS
AT FRIENDS OF CANCER RESEARCH,
SO I CANNOT BE THERE IN PERSON
AS WE HAVE A NEW ADDITION, MY
1 MONTH OLD AUBREY WHO'S JOINING
US TODAY AS WELL.
>> CONGRATULATIONS.
NEXT TIME WE WANT TO SEE
PICTURES.
ADMISSION REQUIRED.
SO THANK YOU ALL FOR THE
INTRODUCTIONS AND NOW IT IS MY
HONOR AND PLEASURE TO INTRODUCE
OUR NEW DIRECTOR OF NCI, DR. KIM
RATHMELL, 17TH DIRECTOR OF NCI
WHO'S JUST RECENTLY SWORN IN AND
WE ARE SO PRIVILEGED TO HAVE HER
PRESENT THE REPORT.
SHE PREVIOUSLY WAS AT VANDERBILT
UNIVERSITY MEDICAL CENTER, AND
CHAIR OF THE DEPARTMENT OF
MEDICINE AND HAS DONE A LOT OF
BENCH RESEARCH AS WELL AS SEEING
CLIENTS SPECIFICALLY WITH KIDNEY
CANCERS.
SO WE ARE VERY EXCITED TO
WELCOME HER.
AND THANK YOU SO MUCH.
>> GREAT.
I'M GLAD TO BE HERE.
FIRST A MIC CHECK, YOU CAN HEAR
ME ALL RIGHT IN THE ROOM?
LET ME KNOW ONLINE IF THAT'S NOT
COMING THROUGH.
SO IT'S MY PLEASURE TO BE HERE,
THANK YOU VERY MUCH FOR THE
INVITATION.
I AM VERY MUCH LOOKING FORWARD
TO TODAY.
GETTING TO HEAR THE DISCUSSIONS.
YOU DO HAVE A GREAT PROGRAM.
I AM STILL LEARNING, I'VE BEEN
HERE NOW 2 1/2 MONTHS.
KEY TODAY, I JUST LEARNED THAT
THERE'S A STARBUCKS IN THIS
BUILDING.
[LAUGHTER]
SO -- BIT BY BIT.
BUT REALLY -- I'LL BE LISTENING
AND LEARNING ALONG WITH YOU ALL
TODAY.
I AM LOOKING FORWARD TO SPENDING
THE DAY, I WILL BE WITH YOU AT
LUNCH, WOULD LOVE TO JUST REALLY
GET TO KNOW YOU, AND WE'LL HAVE
A GO.
SO THE TOPICS OF TODAY ARE,
FIRST, I'LL GIVE YOU JUST A
BRIEF INTRODUCTION TO ME SO THAT
YOU CAN GET TO KNOW WHERE I COME
FROM AND HOW I'LL LIKELY BE
APPROACHING THINGS.
AND THEN WE'LL ALSO -- THE TOPIC
OF THE DAY SINCE I'VE BEEN HERE,
AT LEAST, HAS BEEN BUDGET, AND
SO WE'LL TALK ABOUT BUDGET, AND
THEN GET SOME RESEARCH
HIGHLIGHTS, JUST SO YOU HAVE
SOME -- THERE'S SO MANY GOOD
STORIES TO TELL AND WE'LL HEAR
MORE TODAY BUT THESE ARE JUST
SOME GOOD ONES TO WORK WITH.
SO WHO AM I?
YOU HEARD THAT I'VE MOST
RECENTLY COME FROM VANDERBILT
WHERE I CHAIRED THE DEPARTMENT
OF ME MEDICINE.
I HAVE 20 YEARS OF EXPERIENCE AS
A SCIENTIST, KIDNEY CANCER HAS
BEEN MY FOCUS AREA IN THE
LABORATORY AS WELL AS IN THE
CLINIC.
I'VE BEEN A CLINICIAN, I'VE RUN
CLINICAL TRIALS, AND -- SORRY, I
DIDN'T REALIZE THERE WAS
SOMETHING ON THERE.
AND ALSO EDUCATED SCORES OF
GRADUATE STUDENTS AND LED
TRAINING PROGRAMS.
ALL OF THAT LED ME INTO WANTING
TO PUT IT ALL TOGETHER,
ADMINISTRATION, THAT'S WHAT I
DID AT VANDY.
SO MUCH SO THAT I ACTUALLY SPENT
A LITTLE TIME LEARNING ABOUT THE
OPERATION, MEANING I WENT BACK
TO SCHOOL, GOT A MASTER'S DEGREE
IN HEALTHCARE ADMINISTRATION IN
2021, GRADUATING IN 2022.
SO WITH THAT BACKGROUND COMING
TO THE NCI HAS BEEN JUST A
THRILL.
THIS IS THE BIGGEST CONGLOMERATE
OF ALL OF THOSE PARTS: SCIENCE,
CLINICAL CARE, EDUCATION, AND A
NATIONAL STAGE TO MAKE A
DIFFERENCE AS YOU ALL KNOW.
SO I HAVE REALLY ENJOYED BEING
HERE.
I'LL TALK ABOUT SOME OF MY ROLES
IN ADVOCACY A LITTLE LATER AND
THOSE OF WHO YOU ARE MEETING ME
IN THE ROOM, I'M 6 FEET TALL, I
PLAYED BASKETBALL GROWING UP, MY
KIDS ARE TALLER THAN ME, THEY
PLAYED BASKETBALL, I'VE WATCHED
BASKETBALL, I SPENT 12 YEARS ON
THE FACULTY AT UNC CHAPEL HILL,
GO TAR HEELS!
BUT MY DAUGHTER GOES TO DUKE, SO
GO DEVILS, WE LIKE BASKETBALL.
SO I TEND TO USE BASKETBALL A
LOT IN MY ANALOGIES, I LIKE TO
THINK ABOUT TEAM WORK AND DRILLS
AND BEING THERE TO CATCH THE
PASS AND BASKETBALL JUST HAS A
GOOD ANALOGY FOR EVERYTHING.
THINGS THAT I VALUE.
I REALLY VALUE COMMUNICATION,
LISTENING, THAT'S WHAT I'LL BE
DOING HERE MAYBE MORE THAN
TALKING.
BUT OPEN COMMUNICATION AND BEING
AS TRANSPARENT AS POSSIBLE, I
REALLY BELIEVE IN HONESTY.
I MENTIONED TEAM WORK.
I'VE BEEN A PART OF TEAM
SCIENCE, I'VE BEEN A PART OF
TEAM CLINICALLY AND PART OF
TEAMS OPERATIONALLY, AND FOUND
THAT THAT'S WHERE THE POWER IS,
IS GETTING DIFFERENT PEOPLE IN
THE ROOM, THE TEAM CAN'T WORK IF
YOU DON'T HAVE THE CENTER, POWER
FORWARD, AND A BACKUP TEAM TO
COME IN WHEN THE PLAY CHANGES
AND YOU HAVE TO BE UP AGAINST A
DIFFERENT COMPONENT.
SO IS HAVING ALL OF THOSE PEOPLE
TOGETHER ON THE TEAM MAKES ALL
THE DIFFERENCE.
THEN FINALLY, I REALLY LIKE
DIGGING INTO A COMPLEX PROBLEM.
AND THAT'S THE KIND OF SCIENCE
THAT I DO.
I'M A MOLECULAR BIOLOGIST AND I
LIKE TO FIGURE OUT A PATHWAY,
THAT'S WHAT I LIKE DO WHETHER
I'M SITTING DOWN WITH A PATIENT
AND TRYING TO FIGURE OUT WHAT
WE'RE GOING TO DO WITH A
COMPLICATED SET OF SYMPTOMS.
THAT'S WHAT I LIKE TO DO IN AN
ORGANIZATION.
THAT'S WHY THE BUDGET SITUATION
IS KIND OF FUN, SO -- NOT THAT
FUN BUT I THOUGHT THAT WAS A
GOOD JOKE.
BUT I DO LIKE -- OKAY, SO THAT'S
ME.
BUT I THOUGHT I WOULD TELL YOU A
STORY ABOUT A PARTICULAR
PATIENT, I'VE HAD HUNDREDS OF
PATIENTS WHO HAVE REALLY
COMPELLING STORIES AND YOU ALL
KNOW THAT, BUT I HAD ONE WHO
CHANGED ME PROFESSIONALLY AND
CHANGED ME PERSONALLY, AND SO --
AND HIS STORY IS ONE THAT REALLY
HELPS FOR A LOT OF DIFFERENT
CONVERSATIONS.
SO HIS IS ONE THAT I REALLY LIKE
TO TELL.
SO SOME OF YOU IN THE ROOM MAY
HAVE HEARD THIS, BUT HE'S A
YOUNG MAN THAT I MET IN MY
CLINIC WHEN I'D BEEN RUNNING A
KIDNEY CANCER CLINIC, WHICH WAS
NOT THAT POPULAR IN THE EARLY
2000s.
BUT I'VE BEEN DOING THAT FOR
FIVE OR SIX YEARS, AND HAVE AN
18-YEAR-OLD, BLACK MAN AND HIS
MOM SHOW UP.
SO, YOU KNOW, A KID WHO'S IN MY
CLINIC.
AND HE HAD A SURGERY ABOUT A
MONTH BEFORE, HAD A LARGE KIDNEY
MASS, EVIDENCE OF METASTATIC
DISEASE, THE WOUND WASN'T MALING
HEALING SO HE WAS SENT UP TO THE
UNIVERSITY.
SO HE HAD TRADITIONAL RENAL CELL
CARCINOMA AND WE NEEDED TO
FIGURE OUT THIS WOUND.
FORTUNATELY, WE RAN THIS FOCUSED
KIDNEY CANCER CLINIC AND KNEW
RIGHT AWAY THAT AN 18-YEAR-OLD
AFRICAN AMERICAN MAN WHO, BY THE
WAY, HIS FATHER DIED OF HIV FROM
A BLOOD TRANSFUSION FOR HIS
SICKLE CELL DISEASE, MEANS THAT
HE HAS TO GO -- IN THE TEXTBOOK,
THERE'S THIS INCREDIBLY RARE
TYPE OF TUMOR CALLED RENAL
MEDULLARY CARCINOMA THAT ONLY
OCCURS IN YOUNG PEOPLE WITH
SICKLE CELL -- I HAD NEVER SEEN
THIS BEFORE.
AS ONE OF THE FEW CARD CARRYING
KIDNEY CANCER DOCTORS I IN
AMERICA, I HAD ONLY READ ABOUT
THIS DISEASE.
SO THIS WAS MY INTRODUCTION.
AND WHAT I HAD READ ABOUT THIS
DISEASE WAS THAT THERE WAS
ALMOST NO LITERATURE, AND THEY
USUALLY LIVED FOR ABOUT THREE
MONTHS AFTER DIAGNOSIS.
AND SO WE WERE A MONTH IN, AND
OUT OF SOME DESPERATION, MADE A
LOT OF PHONE CALLS, WE CAME UP
WITH TREATMENT PLAN WHICH WAS
USING A CHEMOTHERAPY REGIMEN
DESIGNED AROUND BLADDER CANCER
BECAUSE WE NEEDED TO OFFER HIM
SOMETHING JUST FOR SYMPTOM
CONTROL AND HIS TUMOR RESPONDED.
IT SHRANK, ALL OF HIS ME STATIC
DISEASE SHRANK.
HE STARTED TO LOOK A LITTLE BIT
BETTER.
BUT OF COURSE IT DIDN'T LAST.
HE LIVED ABOUT A YEAR, THOUGH,
WHICH WAS DRAMATICALLY MORE THAN
WHAT WE HAD EXPECTED AND WHAT
THE COMMUNITY THAT I WAS TALKING
TO OF THE KIDNEY CANCER WORLD
HAD REALLY SEEN BEFORE.
AT THE END OF HIS LIFE, HE WAS
IN HOSPICE AND I HAPPENED -- HE
LIVED ABOUT TWO HOURS AWAY FROM
OUR MEDICAL CENTER.
I HAPPENED TO BE DRIVING ACROSS
THE STATE WITH MY KIDS WHEN HIS
MOM CALLED WITH SOME SYMPTOM AND
ASKED ME TO COME OUT TO -- WELL,
ASKED ME FOR ADVICE, BUT I WAS
WITHIN AN HOUR OF THEIR HOUSE
AND SO OFFERED TO STOP BY AND SO
I WENT OUT, YOU KNOW, GOT
DIRECTIONS, DOWN A GRAVEL ROAD,
THIS IS BEFORE I USED A LOT OF
GPS, PARKED MY KIDS ON THE FRONT
STEP AND WENT IN TO A HOUSE THAT
YOU SHOULD NEVER HAVE TO SEE,
RIGHT?
SINGLE MOM, DYING KID IN THE
LIVING ROOM, AND WE TALKED ABOUT
THE SYMPTOMS, AND THEN SHE SAT
AT HER KITCHEN TABLE WITH ME AND
JUST UNLOADED ON HOW EVERYTHING
WAS SO UNFAIR.
YOU KNOW, IT'S UNFAIR THAT HE
HAD HAD THIS CANCER, IT WAS
UNFAIR THAT IT TOOK A LONG TIME
TO GET TAKEN SERIOUSLY BECAUSE
HE'S 18 YEARS OLD, 17, YOU KNOW,
WHO LISTENS TO THEM WHEN THEY
COMPLAIN ABOUT ABDOMINAL PAIN?
BECAUSE HE HAD TO DO THIS
WITHOUT A DAD, BECAUSE HE HAD TO
DO THIS WITH, YOU KNOW -- YOU
KNOW, GROWING UP IN POVERTY, AND
BECAUSE HE WAS A KID WITH TALENT
WHO NEVER GOT TO EXPLORE THAT.
SO SHE SAID, YOU KNOW, YOU CAN'T
JUST TREAT HIM AND THEN BE DONE,
LIKE THERE HAS TO BE MORE.
AND SO I DON'T KNOW -- I WROTE A
PAPER AND BY THEN A COUPLE OF
OTHER -- ONE PERSON AT OHIO
STATE HAD TREATED SOMEONE ELSE
WITH THE SAME REGIMEN, ALSO
LIVED A YEAR, SO WROTE A PAPER,
ABOUT TWO OR THREE PEOPLE.
AND WE POSTED IT ON TWITTER.
SO TO MAKE THE STORY GO A LITTLE
BIT FASTER, WE POSTED IT ON
TWITTER, THAT STARTED THE
COMMUNITY TALKING A LITTLE BIT,
AND WE MET A REALLY POWERFUL
ADVOCATE, CORA COUCONNOR, A MAD
RELATIVE SISTER OF A YOUNG MAN
WHO IS STILL ALIVE TODAY, BY THE
WAY, WITH YOU BUT HE WAS THE ONN
SHE FOUND HAD LIVED WITH RENAL
MEDULLARY CARCINOMA AND COULDN'T
BELIEVE THIS WAS POSSIBLE.
SO SHE INTRODUCED US TO AN
ADVOCATE IN HOUSTON AND THEY GOT
THE FEW OF US THAT THERE WERE
SPEAKING THE LAJ WAJ OF THE
RENAL MEDULLARY CARCINOMA, WE
GOT TOGETHER WITH A THINK TANK
STYLE MEETING IN 2017 IN
NASHVILLE, TENNESSEE.
I HAD JUST MOVED TO NASHVILLE.
WE BROUGHT TOGETHER PEOPLE FROM
AROUND THE WORLD, BUT ALL
INTERESTED AND TALKED ABOUT WHAT
DID WE NEED.
WE NEEDED JUST GUIDELINES, WE
NEEDED EDUCATION, EDUCATIONAL
MATERIALS PUSHED OUT TO DOCTORS
AND PATIENTS AND WE STARTED AN
ORGANIZATION CALLED RMC
ALLIANCE, WHICH WAS REALLY JUST
MEANT TO CONTINUE TO RAISE
AWARENESS FOR THIS ULTRA-RARE
DISEASE, WHICH TODAY HAS GRANT
MECHANISMS, HAS FUNDING, HAS AN
ACTIVE COMMUNITY, HAS CLINICAL
TRIALS.
THESE KIDS STILL AREN'T LIVING
LONG ENOUGH BUT THEY'RE LIVING
LONGER.
WE UNDERSTAND THE BIOLOGY
BETTER.
AND IT IS A NAMED PART OF THE
CCDI EFFORT HERE AT THE NCI SO
IT IS NO LONGER A SURPRISE THAT
NO ONE HAS EVER HEARD OF, IT
SHOULD BE SOMETHING PEOPLE KNOW.
SO THAT'S WHERE I COME FROM AND
THAT'S WHERE I UNDERSTAND THE
POWER IN WHAT YOU GUYS DO.
THE IMPACT OF ADVOCACY, I KNOW
CAN'T BE UNDERSTATED.
SO IT'S HARD TO TRANSITION FROM
THAT TO BUDGET.
[LAUGHTER]
BUT WE CAN'T DO WHAT WE DO
WITHOUT FUNDING.
SO YOU ALL CAN TELL THE STORY TO
REALLY HELP US BE ABLE TO RAISE
THE FUNDS TO DO WHAT WE DO.
SO IT'S IMPORTANT YOU KNOW WHERE
WE ARE SO YOU CAN SAY WHAT IT IS
THAT WE REALLY TRULY NEED TO BE
ABLE TO MAKE THE KIND OF
DIFFERENCE THAT'S IMPORTANT.
SO THIS IS WHERE WE ARE IN TERMS
OF OUR OVERALL BUDGET PROCESS.
IF YOU WAMP WATCH THE NEWS YOUW
WE'VE AVERTED THREE TIMES, WE'RE
NOW HOPEFUL THAT MARCH 22ND WILL
BE OUR DAY THAT WE'LL HAVE A
BUDGET THEN.
WE'RE HALFWAY THROUGH THE YEAR.
WE'VE BEEN LIVING WITH TH THE
ASSUMPTION THAT WE KNOW WHAT
WE'RE GOING TO GET BASED ON WHAT
HWE GOT LAST YEAR, WE NEED TO BE
CONSERVATIVE WHICH I KNOW IS NOT
WHAT WE NEED TO DO, AND WE WILL
MAKE ADJUSTMENTS WHEN WE GET OUR
BUDGET.
SO JUST TO KNOW A LITTLE BIT OF
THE ECOSYSTEM THAT'S GOING ON IN
THESE NEXT COUPLE OF WEEKS, WE
ARE A PART OF LABOR HEALTH,
RELATED AGENCIES BUT ALL OF
THESE GROUPS NEED TO HAVE THEIR
BUDGETS BUILT, SO WITH THE
COMPETITIVE LANDSCAPE, THESE ARE
OTHER IMPORTANT THINGS TOO, AND
SO MAKING SURE THAT JUST LIKE
RMC DOESN'T GET LOST IN THE SEA
OF KIDNEY CANCER, THAT CANCER
DOESN'T GET LOST IN THE SEA OF
ALL THE OTHERS.
SO WHAT DO WE SPEND OUR MONEY
ON?
WE SPEND IT ON, AS YOU KNOW,
GRANTS THAT GO OUT TO THE
EXTRAMURAL COMMUNITY.
THAT'S THE BLUE -- ARE ALL
RESEARCH GRANTS, VARIOUS TYPES.
WE HAVE THOSE THAT FUND A SMALL
GROUP OF INVESTIGATORS, THOSE
THAT FUND WHOLE CENTERS, ABOUT
THREE QUARTERS WORK THAT WAY.
THERE'S SOME, ABOUT 7% THAT JUST
RUN IN PLACE, KEEP THE LIGHTS
ON, AND ABOUT 18% IS HERE,
RIGHT?
I'M GLAD YOU'RE HERE SO YOU GET
TO SEE THE -- ESPECIALLY FOR
THOSE ONLINE, THE NUMBER OF
RESEARCHERS THAT WE HAVE HERE,
THE CLINICAL CENTER.
THIS IS SORT OF THE HUB OF A BIG
ENTERPRISE.
NOW LAST YEAR, OUR ALLOCATION
WAS $7.3 BILLION.
WE HAD THE PRIVILEGE, THE
RESPONSIBILITY, TO INFORM THE
WHITE HOUSE OF WHAT WE THINK IT
WOULD COST TO DO THE WORK THAT
WE'RE BEING ASKED TO DO.
ACTUALLY NEED TO CHANGE THE
TITLE OF THIS SLIDE BECAUSE WHAT
SAYS WHAT IT WOULD COST TO MAKE
MORE RAPID PROGRESS.
THAT IS NOT TRUE.
IF WE HAD MORE WE COULD MAKE
MORE RAPID PROGRESS.
THIS IS WHAT IT WOULD COST TO DO
WHAT YOU EXPECT US TO DO.
SO WHEN YOU RUN THE
CALCULATIONS, SOME THINGS ARE
JUST MORE EXPENSIVE, MORE
CLINICAL TRIALS, THERE'S CLEARLY
AN APPETITE TO TAKE MORE THINGS
OUT AND GET THEM INTO PATIENTS,
WOULD BE AN INCREASE FROM 7.3 TO
9.9 BILLION THIS YEAR.
THAT'S A BIG ASK IN THE WHOLE
CLIMATE THAT WE'RE IN, THE
PRESIDENT'S ASKED FOR
7.8 BILLION, WE DON'T KNOW WHAT
WE'RE GOING TO GET.
IF THIS YEAR WE HAD GOTTEN #
.9GOTTEN9.9 AND CONTINUE TO DO E
THINGS WE WANT TO DO NEXT YEAR,
IT WOULD BE $11 BILLION.
SO WE DON'T WANT TO DO LESS.
YOU KNOW, WE'RE DOING MORE WITH
LESS, BUT WE DON'T WANT TO DO --
WE'RE JUST SAYING WHAT WOULD WE
DO IF WE HAD -- WE WOULD BE
REALLY FOCUSING ON --
REVOLUTIONIZING CLINICAL TRIALS
AND GETTING MORE PATIENTS ACCESS
TO CLINICAL TRIALS IN MORE
CORNERS OF THE COUNTRY AND THE
WORLD, CLARIFYING THE IMPACT OF
THE ENVIRONMENT ON CANCER RISK
IS A BIG AREA THAT'S NEW AND
BURGEONING, WE HAVEN'T HAD A
REAL OPPORTUNITY TO TAKE A BITE
OUT OF AND REALLY TAKE ADVANTAGE
OF THE POWER OF CANCER DATA.
SOME OF THAT'S ALREADY THERE,
PUTTING IT TOGETHER IS SUPER
EXPENSIVE TO PUT IT UP IN THE
CLOUD AND MAKE IT ACCESSIBLE.
AND THEN REALLY -- I JUST WANT
YOU TO KNOW THAT WE HAVE HAD
GENEROUS INCREASES YEAR OVER
YEAR, SO THE LEFT GRAPH SHOWS
INCREASES IN OUR ALLOCATION, AND
YOU CAN SEE EVERY YEAR UP UNTIL
NOW, IT'S BEEN AN INCREASE,
INCLUDING MOONSHOT MONEY THAT'S
SHOWN IN YELLOW.
AND WHAT WE'VE DONE WITH THAT IS
CONTINUE TO PUSH MORE GRANT
DOLLARS OUT THE DOOR.
THE BLUE IS AWARDS THAT WE GIVE.
SO THE MORE WE HAVE ALLOCATED
THE MORE WE'RE GOING TO DO AS A
NATION TO MAKE A BIG DIFFERENCE
FOR CANCER.
IF WE GET ANOTHER ALLOCATION
JUST LIKE $7.3 BILLION AGAIN,
THAT IS NOT STATUS QUO, THAT IS
ACTUALLY A BIG DROP FOR US.
IT'S A DROP BECAUSE SOME THINGS
JUST COST MORE MONEY.
THIS IS -- CANCER IS NOT
DIFFERENT THAN THE REST OF THE
WORLD.
SALARIES GO UP.
EXPENSES GO UP.
EVERYTHING COSTS MORE.
THERE ARE ABOUT $100 MILLION OF
STANDARD INCREASES THAT ARE
UNAVOIDABLE FOR US EVERY YEAR.
AND IF WE WANT TO FUND THE
GRANTS EVEN AT THE CURRENT LEVEL
THAT WE CURRENTLY HAVE, NOT AN
INCREASE, THAT COSTS US ANOTHER
$250 MILLION.
GRANTS COST MORE.
IT JUST ADDS UP.
SO IT'S GOING TO EAT AWAY AT
WHAT WE'RE ABLE TO DO.
AND WHAT WE'LL LOSE, WE'LL LOSE
FEWER GRANTS OUT THE DOOR, FEWER
BIG PROJECTS.
I LOVE TRAINING AND I THINK OUR
WORKFORCE IS ONE OF OUR MOST
IMPORTANT ASSETS, SO CUTTING
THOSE KINDS OF PROGRAMS WILL BE
VERY, VERY HARD FOR ME, AND THIS
IS AN R01 INTRAMURAL PROGRAM.
THE YEAR WAS STARTED WITH BUDGET
REDUCTION WITH 15% ACROSS ALL
NON-PERSONNEL, SO THOSE HAVE
ALREADY OCCURRED BUT WE ARE
CURRENTLY DOING A HIRING PAUSE
SO WE CAN REALLY LOOK AT OUR
HIRING PRACTICES BECAUSE WE
CAN'T AFFORD TO GROW.
SO THIS IS WHERE WE ARE.
IF YOU WANT TO KNOW MORE,
THERE'S ALL KINDS OF INFORMATION
ONLINE.
THERE'S VIDEOS AND WE REALLY TRY
TO MAKE IT TRANSPARENT WHERE OUR
DOLLARS COME FROM AND WHERE THEY
GO.
SO JUST A COUPLE OTHER THINGS I
WANT TO MAKE MENTION.
ONE IS THE NATIONAL CANCER PLAN.
THE NATIONAL CANCER PLAN WAS
ROLLED OUT -- YOU'LL HEAR A LOT
MORE ABOUT THIS LATER TODAY, IT
WAS ROLLED OUT A YEAR AGO TO PUT
A FRAMEWORK AROUND ALL OF THE
WORK THAT WE DO.
IT HAS EIGHT GOALS.
THOSE GOALS ARE PREVENT CANCER,
DETECT CANCERS EARLY, DEVELOP
EFFECTIVE TREATMENTS, WHICH IS,
I THINK, ONE OF THE THINGS THAT
WE TALKED ABOUT MOST ALL OF
THOSE COMPONENTS ARE IMPORTANT
TO MAKE A BIG DENT, AND THEN
DELIVER OPTIMAL CARE.
ALL OF THAT HAPPENING USING
DATA, ELIMINATING HEALTH
INEQUITIES INTENTIONALLY.
OPTIMIZING THE WORKFORCE AND
REALLY IMPORTANT IS ENGAGING
EVERY PERSON BECAUSE EVERYBODY
IS IMPACTED BY CANCER.
AND WITH THIS PLAN, WE CAN MAKE
STRATEGIES TO MOVE FORWARD.
BUT WE ALSO NEED A BIG GOAL.
AND THE GOAL WAS SET FOR US BY
THE CANCER MOONSHOT.
SO THIS IS THE WHERE DO WE NEED
TO GET TO AND BY WHEN, RIGHT?
WHERE DO WE NEED TO GET TO?
50% REDUCTION IN DEATH FROM
CANCER IN 2047.
IT'S ACHIEVABLE.
IT'S HARD, AND IT WILL TAKE ALL
OF THOSE PART OF THE NATIONAL
CANCER PLAN TO GET THERE, AND
WHEN YOU DO THAT, WE'LL HAVE
CHANGED CANCER AND THE CANCER AS
WE KNOW IT.
ENDING CANCER AS WE KNOW IT.
A COUPLE WINS.
I JUST WANT TO MAKE SURE YOU
KNOW.
WE DIDN'T STOP DOING THINGS JUST
BECAUSE THE BUDGET GOT TIGHT.
THERE'S ALL KINDS OF GOOD THINGS
TO TALK ABOUT, NEW FDA APPROVAL
OF THERAPIES FOR -- CELLULAR
THERAPIES IN SOLID TUMORS,
REALLY HUGE WIN.
I'M GOING TO TALK ABOUT A FEW
MORE OF THESE.
I'M NOT GOING TO RUN THROUGH
THEM ALL.
THIS STEMS FROM STEVE ROSENBERG,
WHO HAS BEEN A CHAMPION OF
CELLULAR IMMUNOTHERAPY FOR
DECADES AND THIS HAS ALREADY
REVOLUTIONIZED LEUKEMIA AND
LYMPHOMA, INCLUDING NON-CANCER.
I'M REALLY EXCITED ABOUT THIS
TRIAL, WHICH PUTS SELF-TESTING
INTO THE HANDS OF PATIENTS.
REALLY USES THE NATIONAL CANCER
PLAN COMPONENT OF ENGAGE EVERY
PERSON, WHICH TESTING FOR
CERVICAL CANCER IS NOT EQUALLY
AVAILABLE TO EVERYONE, BUT IF
TESTED, IT CAN BE A CANCER THAT
WE CAN CONTROL AND MANAGE IT,
ESPECIALLY WHEN CAUGHT EARLY.
SO TESTING FOR HPV IS SOMETHING
THAT CAN BE DONE BY ONCE SELF,
SO THIS TEST IS A BIG
PARTNERSHIP WITH THE FDA AND
WITH SEVERAL BIOTECH COMPANIES
TO TEST VARIOUS DEVICES.
WITH BROAD COLLABORATION.
WE'RE ALSO -- YOU'RE GOING TO
HEAR MORE ABOUT A BIG SCREENING
STUDY -- I THINK I'M RUNNING
OVER SO I'M GOING TO LEAVE YOU
TO HEAR ABOUT THAT LATER, BUT
SCREENING IS GOING TO BE VERY
IMPORTANT AND HAVING THAT
OPPORTUNITY.
THANK YOU VERY MUCH.
ALSO -- I'M OKAY FOR TIME?
OH, REALLY?
IT FEELS LIKE I'M -- GOOD.
OKAY.
THEN I'LL SLOW DOWN, SAY ALL
KINDS OF THINGS.
NO.
SO I WANT YOU TO KNOW THAT WE
ARE REALLY TRYING TO THINK ABOUT
INNOVATIVE WAYS TO TAKE THESE
DISCOVERIES AND GET THEM INTO
THE HANDS OF PATIENTS.
THE NEW NCI VIRTUAL CLINICAL
TRIALS OFFICE IS A PILOT THAT
WAS REALLY BORN FROM THE
PANDEMIC AND THE EXPERIENCE WE
LEARNED HOW MANY THINGS YOU
COULD REALLY DO REMOTELY AND HOW
YOU CAN DO THINGS IN PATIENTS'
HOMES, AND WHAT DO YOU REALLY
NEED BOOTS ON THE GROUND AND A
WHOLE WORK FOFS OR COULD THEY
MEET ONLINE?
THE VIRTUAL CLINICAL TRIALS
OFFICE FOR A SITE THAT DOESN'T
HAVE A TRIALS NURSE AND A DATA
COORDINATOR AND REGULATORY --
THOSE PEOPLE CAN BE THERE ON --
THIS IS AN iPAD, YOU KNOW,
THERE VIRTUALLY.
SO WE HAVE SIX SITES THAT ARE
CURRENTLY CONDUCTING THIS PILOT.
ONE OF THE BIG INITIATIVES OF
THE WHITE HOUSE HAS BEEN A FOCUS
ON PEDIATRIC CANCERS, AND THAT
HAS LED TO THE CHILDHOOD CANCER
DATA INITIATIVE.
A REALLY BIG EFFORT TO LINK DATA
SOURCES SO THAT ALMOST EVERY
PEDIATRIC CANCER IS A RARE
TUMOR.
WE REALLY NEED TO LEARN FROM
THESE TUMORS TO BE ABLE TO
UNDERSTAND ADULT DISEASE, HOW
CANCERS COME TO BE, AND BE ABLE
TO MAKE MORE RAPID ADVANCES IN
THESE TUMOR TYPES, ESPECIALLY TO
CURE CHILDREN, RIGHT?
SO I ALREADY MENTIONED THAT
RENAL MEDULLARY CARCINOMA WAS
ONE OF THE LISTED PRIORITY AREAS
TO TAKE A LOOK AT, REALLY,
REALLY THRILLING.
SO THIS IS MOVING FORWARD REALLY
NICELY AND TOUCHES ON SO MANY
PARTS OF THE NATIONAL CANCER
PLAN.
SO THIS IS MY LAST SLIDE JUST TO
CLOSE.
BUDGET OUTLOOK IS NOT IDEAL.
WE HAVE TO THINK ABOUT
EVERYTHING THAT WE DO IN THE
CONTEXT OF A TIGHT BUDGET BUT AT
THE SAME TIME, WE HAVE
OPPORTUNITIES THAT WE'VE NEVER
HAD EVER BEFORE.
I MEAN, THAT'S WHAT MADE ME
EXCITED TO COME AND TAKE A JOB
LIKE THIS, IS THE POTENTIAL.
THE POTENTIAL IS JUST HUGE, AND
IF WE WORK TOGETHER ACROSS THE
CANCER COMMUNITY, VERY MUCH --
THAT INCLUDES THE ADVOCACY
COMMUNITY, WE CAN MAKE THE BEST
DECISIONS THAT ARE AVAILABLE TO
US AND MAKE REALLY HUGE
PROGRESS.
THIS ULTIMATELY WILL BENEFIT
EVERYONE, AND SO I'M REALLY
EXCITED TO HEAR ALL OF THE
PRESENTATIONS TODAY TO HEAR YOUR
THOUGHTS AND DISCUSSION AND
REALLY JUST TO GET TO KNOW YOU.
SO I WILL TAKE ANY QUESTIONS.
>> THANK YOU SO MUCH,
DR. RATHMELL.
WE'RE JUST SO EXCITED TO HEAR,
YOU KNOW, INTIMATELY ABOUT WHAT
YOU'RE INVOLVED IN, WHAT YOU'RE
CONCERNED WITH, AND WE'RE HAPPY
TO BRING OUR PERSPECTIVE TO
THIS, AND JUST RECOGNIZING HOW
PAINFUL THE BUDGET SITUATION IS
AND NOT KNOWING WHERE THINGS ARE
GOING TO LAND.
I'M WONDERING, YOU KNOW, THE
PAINFUL DECISIONS THAT
LEADERSHIP IS GOING TO HAVE TO
MAKE, AND I THINK SOMETIMES, YOU
KNOW, DO YOU SEE, LIKE IS
EXTRAMURAL GOING TO HURT MORE OR
INTRAMURAL OR IS EVERYBODY GOING
TO HURT EQUALLY, AND JUST TO
PIGGY BACK ON THAT THOUGHT IS,
YOU KNOW, THERE ARE SOME -- THE
RARER CANCERS WHERE WE'RE JUST
SEEING STRIDES BEING MADE,
RIGHT, AND IT SEEMS LIKE
SOMETIMES WHEN TIMES ARE TOUGH,
THE PEOPLE -- YOU KNOW, WHEN
THERE'S NOT AS MUCH POPULATION
AND SOMETHING IS RARE, THEY KIND
OF GET FORGOTTEN, AND, YOU KNOW,
THESE ARE THE SAME GROUPS THAT
DON'T HAVE THE SAME BENEFIT
FROM, YOU KNOW, ADVANCES THAT
SOME OF THE OTHER CANCERS MAY
HAVE, AND I DON'T WANT TO GET
INTO THIS CANCER VERSUS THAT
CANCER, BUT DOES MORTALITY OR,
YOU KNOW, WHOEVER HASN'T BEEN
FITTED, IS THAT GOING TO BE PART
OF THE CONSIDERATION?
>> THAT'S A REALLY COMPLICATED
QUESTION.
AND IT'S HARD TO SAY THAT
EVERYONE WILL BE AFFECTED
UNIFORMLY BECAUSE THERE WILL
HAVE TO BE SOME HARD DECISIONS
THAT ARE MADE.
I MEAN, IT'S HARD TO BE HERE TWO
MONTHS AND ALREADY SAY WE'RE
HAVING A HIRING PAUSE, RIGHT?
I MEAN, THAT'S -- SO THAT HITS
THE INTRAMURAL PROGRAM.
BUT IT HURTS THE EXTRAMURAL
PROGRAM TOO BECAUSE THAT'S THE
PEOPLE WHO WIN THE GRANTS FOR
THE EXTRAMURAL PROGRAM.
SO I THINK TO YOUR QUESTION
ABOUT HOW WILL THIS AFFECT
DIFFERENT TUMOR TYPES REMAINS A
LITTLE BIT TO BE SEEN.
IT COULD GO BOTH WAYS.
AND IN SOME WAYS, THE BIGGER
TUMOR TYPES HAVE A LOT OF BUFFER
OUT THERE, THEY HAVE BIG
FOUNDATIONS THAT HAVE -- THAT
ARE STABLE TO SUPPORT
RESEARCHERS THAT WILL KEEP THEM
GOING AND IN SOME SENSES, THE
NCI CAN BE THE ONLY RESOURCE FOR
SOME TUMOR TYPES.
YOU KNOW, I THINK MY FOCUS WILL
BE ON WHERE THERE'S MOMENTUM,
WHERE WE CAN HAVE BIG IMPACT.
YOU KNOW, WE CAN'T PUT IT ALL IN
ONE PLACE, WE HAVE TO KEEP A
PRETTY GOOD BALANCE GOING.
THAT'S I THINK WHERE THE
NATIONAL CANCER PLAN REALLY
HELPS, SO THAT WE CAN REALLY
STILL -- WE CAN'T STOP DOING
PREVENTION AND JUST FOCUS ON
TREATMENTS.
WE CAN'T JUST FOCUS ON SCREENING
AND WE CAN'T FORGET ABOUT THE
WORKFORCE, RIGHT?
SO ALL OF THOSE PIECES HAVE TO
BE STRONG.
AND IT'S GOING TO BE A LITTLE
BIT, BIT BY BIT, TO FIGURE OUT
WHERE IT HAPPENS.
>> THANK YOU, WE KNOW IT'S
REALLY TOUGH.
DOES ANYONE ELSE HAVE ANY
COMMENTS, QUESTIONS?
LEE?
>> THANKS FOR ALL YOU DO, AND
WELCOME TO THE D.C. AREA.
I'VE LIVED HERE FOR 40 YEARS, SO
I'VE SEEN A LOT COMING AND
GOING.
I HAVE A COUPLE QUESTIONS
RELATED TO THE BUDGET, BUT ONE
NON-BUDGET-RELATED IS EARLY
ONSET CANCERS.
CERTAINLY WE'RE SEEING IT IN
COLORECTAL CANCER WHICH IS AB
AREA I FOCUS ON BUT ALSO BREAST
CANCER AND OTHER CANCER TYPES.
NO ONE KNOWS WHY THAT'S
HAPPENING.
DO YOU HAVE ANY THOUGHTS ON THAT
AND WHAT KIND OF INITIATIVES
COULD THE NCI PUT IN PLACE THAT
WOULD HELP FURTHER RESEARCH IN
THAT AREA?
>> I THINK THOSE KINDS OF THINGS
ARE HELPED WHEN WE FIRST NAME
THEM AND START TO BRING PEOPLE
TOGETHER A LITTLE LIKE THE RMC
STORY.
WHEN I WAS AT VANDERBILT, WE
RECRUITED A WOMAN FROM MD
ANDERSON TO LEAD SOME COLON
CANCER THINGS.
SHE HAD THIS SECRET PASSION
ABOUT EARLY ONSET COLORECTAL
CANCER, AND -- IT WAS NOT SECRET
BUT IT WASN'T THE THING IT IS
TODAY, WHATEVER -- CATHY YANG,
YOU GUYS KNOW, BUT SHE DIDN'T
JUST DO IT FOR COLON CANCER.
SHE BROUGHT TOGETHER
INVESTIGATORS AROUND THE TABLE
FOR SARCOMAS AND EARLY ONSET
BREAST CANCER AND ALL THESE
OTHER CANCERS.
FIRST FOCUSING ON ISSUES THAT
PEOPLE JUST WEREN'T TALKING
ABOUT.
LIFESTYLE IN THAT AGE GROUP.
AND HOW TO EVEN HAVE SOME OF THE
CONVERSATIONS AROUND CANCER
REALLY TO SUPPORT THE PATIENTS
FIRST, BUT ONCE THEY'RE
TOGETHER, IT GAVE THE
OPPORTUNITY FOR RESEARCHERS TO
START THINKING ABOUT HOW CAN WE
ADDRESS LIKE WHAT MIGHT BE A
ROOT CAUSE.
SO I THINK YOU HAVE TO JUST
START TO, YOU KNOW, IDENTIFY AND
BRING CLUSTERS TOGETHER.
THERE ARE GRANTS THAT ARE OUT
THERE TODAY THAT ARE TRYING TO
INVESTIGATE THIS.
THIS IS AN INTEREST OF MORE THAN
JUST THE NCI, THE NIEHS I KNOW
IS ALSO INTERESTED.
SO IT'S INTERESTING HOW IT'S
BECOME NOW IN THE MORE PUBLIC
ARENA, AND I THINK THAT'S GREAT
BECAUSE THAT WILL BRING MORE
ATTENTION.
>> I KNOW IT IS A CANCER GRAND
CHALLENGE TOPIC THIS YEAR, WHICH
OF COURSE IS AN NCI C RUK
INITIATIVE.
I THINK TODAY MAYBE THEY'RE
GOING TO BE ANNOUNCING THE
WINNERS, TODAY OR TOMORROW?
>> IT'S THIS WEEK, YEAH.
>> THE CHALLENGES, SO THAT WILL
HOPEFULLY BE ONE OF THEM.
>> NATHANIEL.
>> YEAH, I APPRECIATE THE
THOUGHTS.
I WANTED TO -- IT WAS MENTIONED
EARLIER THE HIRING CLAUSE, AND
I'M WONDERING, I THINK IT'S
INTERESTING YOU HAVE A LOT OF
HEADWINDS GOING AT YOU WITH
THIS, AND IT MAY LEAD TO LEAKAGE
OF TALENT, RIGHT, INTO MORE
INDUSTRY ROLES THAT ARE WILLING
TO PAY A HIGHER PREMIUM FOR
TALENT.
AT THE SAME TIME, I'M REALLY
STARTING TO CONTINUE TO SEE
DEGRADATION OF TRUST IN THAT
SUBSECTION OF CANCER RESEARCH,
RIGHT?
I WONDER IF THERE IS A PLAY HERE
TO ALLOCATE MORE RESOURCES
TOWARDS TRYING TO REBUILD THE
PUBLIC IMAGE OF THAT
PUBLIC-PRIVATE KIND OF
RELATIONSHIP.
I THINK COVID UNFORTUNATELY HAD
MANY THINGS BE CATALYZED DURING
THAT.
WHAT ARE YOUR THOUGHTS ON THAT
BECAUSE IT'S HARD TO LOSE THAT
TALENT BUT STILL WANT TO
CONTINUE TO HAVE THAT IN A
WORKING HAPPENING FOR CANCER
PATIENTS.
>> ABSOLUTELY.
I'LL ADDRESS SORT OF TWO
QUESTIONS THERE.
THE BRAIN DRAIN IS A HUGE RISK.
IT HAS BEEN HAPPENING FOR YEARS
ALREADY.
IT REALLY ACCELERATED DURING THE
PANDEMIC, WHEN COMPANIES -- I
SAW THIS AS A CHAIR, PEOPLE
STARTED HIRING NOT JUST THE
PEOPLE YOU KNEW WERE AT RISK BUT
EVERYBODY.
THAT SLOWED DOWN A BIT
FORTUNATELY, BUT ANY TIME
THERE'S INSTABILITY, IT'S A RISK
THAT WE HAVE SOME DEPARTURES.
I THINK THE BIGGER ISSUE ON THE
WORKFORCE FRONT IS TO REALLY
INCREASE THE PIPELINE AND TO
MAKE SURE THAT WE HAVE LOTS OF
PEOPLE INTERESTED IN GOING INTO
CANCER RESEARCH AND IT IS
RETAINING TALENT.
I THINK INDUSTRY NEEDS GOOD
TALENT TOO.
I SUSPECT THERE WILL BE SOME
BACK AND FORTH AND SO THAT
TALENT ISN'T LOST, I DON'T
THINK.
I THINK THEY'RE JUST IN A
DIFFERENT GEOGRAPHIC SPACE, SO
THINKING ABOUT HOW WE WORK
TOGETHER TO THINK ABOUT THE
CANCER RESEARCH COMMUNITY AT
LARGE, I THINK WILL HELP US
THERE.
DUE TO PUBLIC TRUST, IT'S UNITED
SO IT REALLY IS ONE QUESTION.
WE DID LOSE SOME GROUND DURING
THE PANDEMIC, BUT WE ARE, I
THINK, MAKING SOME HEADWAY.
WE'VE BEEN REALLY PROACTIVE AT
TRYING TO BE COMMUNICATING
OPENLY IN ALL OF THE FORUMS THAT
ARE AVAILABLE, INCLUDING SOCIAL
MEDIA, BUT ALSO I'M TRYING TO
GET OUT IN FRONT OF AS MANY
PEOPLE AS I CAN AND GET OTHER
FOLKS OUT TO REALLY TALK ABOUT
WHAT WE'RE DOING, THE WINS, TO
HELP PEOPLE REALIZE THAT CANCER
HAS MADE TREMENDOUS PROGRESS.
ONE OF THE THINGS THAT WAS MOST
DISHEARTENING TO ME WHEN I WAS
FIRST SAYING LIKE, OH, I'M GOING
TO GO TO THE NCI, BE THE NCI
DIRECTOR, WOULD BE PEOPLE WHO
WOULD SAY, WELL, NOTHING
HAPPENED UP THERE, AND -- IN
YEARS, WHICH IS SO WRONG.
CANCER IS DIFFERENT TODAY THAN
IT WAS 10 YEARS AGO.
IT WILL BE MUCH DIFFERENT 10
YEARS FROM NOW, AND THERE ARE
CANCERS TODAY THAT ARE VERY
CURABLE.
THERE ARE CANCERS TODAY THAT ARE
VERY MANAGEABLE BUT 10 YEARS
AGO, THAT WASN'T TRUE AT ALL.
EVEN KIDNEY CANCER, MY OWN
CANCER, HAS REALLY UNDERGONE
THIS RADICAL CHANGE, OPENED UP
THE DOORS FOR MORE RADICAL
CHANGES.
AND IT'S BEEN INTERESTING AS
I'VE CONTINUED TO TALK TO PEOPLE
AND HEAR PEOPLE SAY, YOU KNOW,
WHAT'S YOUR EXPERIENCE WITH
CANCER AND THEN THEY'LL DESCRIBE
SOMEONE WHOSE CANCER WAS TAKEN
CARE OF, EASY PEE SEE, PEASY, AM
LIKE, YES, THAT'S THE CANCER
EXPERIENCE WE WANT EVERYONE TO
HAVE TO SO THE CANCER ISN'T
SCARY ANYMORE AND THAT CANCER IS
SOMETHING THAT WE CAN MANAGE AND
UNDERSTAND.
IT'S A HARD PROBLEM TO TACKLE,
IT'S A THOUSAND DIFFERENT
DISEASES, IT'S NOT REALLY ONE
AND YOU KNOW WHAT THEY'RE ASKING
US TO DO IS NOT JUST TO PUT A
MAN ON THE MOON BUT TO COLONIZE
A SOLAR SYSTEM WORTH OF PLANETS
THAT ALL HAVE DIFFERENT
ENVIRONMENTS BUT WE'RE UP TO THE
CHALLENGE AND WE'RE GETTING
THERE AND MAKING REALLY BIG
STRIDES.
I THINK THE OTHER PART, THIS
GETS BACK TO THE WORKFORCE, IS
THAT WE NEED TO GET THE MESSAGE
OUT IN YOUNGER PEOPLE.
AND REALLY HELPING YOUNG FOLKS
KNOW WHAT THERE IS IN THE CANCER
SPACE, WHAT THEY CAN BE A PART.
THIS IS PART OF THE NATIONAL
CANCER PLAN, EVERYBODY HAS A
ROLE, INCLUDING KIDS IN MIDDLE
SCHOOL, AND OPENING THEIR EYES
TO FUTURES WORKING IN THE CANCER
ARENA.
SO THAT'S THE LONG TERM IF
THERE'S A BRAIN DRAIN, I HOPE WE
JUST HAVE A BIGGER GROWTH IN THE
FUTURE.
>> THANK YOU.
BEFORE I RECOGNIZE VICKIE
ONLINE, I JUST WANTED TO PIGGY
BACK ON WHAT YOU SAID ABOUT, YOU
KNOW, THE MOONSHOT'S ROLE OF
ENDING CANCER AS WE KNOW IT.
I WONDER IF IT SHOULD HAVE
BEEN -- AND CANCERS AS WE KNOW
THEM.
>> YES.
>> CHANGE OUR PRONOUNS HERE.
BUT -- BECAUSE MY -- WHEN THAT
WAS RE-LAUNCHED, MY FIRST TALK
WAS ALWAYS WHAT DOES THAT MEAN,
WHAT DOES THAT MEAN.
LIKE YOU SAID, THERE'S A LOT OF
CANCERS WITH THE NEW
TECHNOLOGIES AND NEW
THERAPEUTICS THAT WERE
PREVIOUSLY DEADLY THAT ARE NOW
MANAGEABLE, AND I THINK THAT MAY
NOT BE SEEN AS A VICTORY
INTEREST THE GENERAL PUBLIC
WHERE YOU GET CANCER AND YOU
LIVE OR YOU'RE DEAD.
THERE'S THIS NEW MIDDLE GROUND
AND I THINK IT'S A WHOLE GROUP
OF INVISIBLE PEOPLE THAT IT
WOULD BE WORTH HIGHLIGHTING THAT
THIS IS PROGRESS.
IT MAY NOT BE THE ULTIMATE GOAL
BUT IT IS WAY BETTER THAN
INSTANT DEATH.
VICKIE, I SEE YOU'VE GOT YOUR
HAND RAISED.
PLEASE GO AHEAD.
>> THANK YOU.
CAN YOU HEAR ME WELL ENOUGH?
>> I CAN.
>> I APOLOGIZE FOR ASKING THIS,
I THINK IT'S A VERY HARD
QUESTION BUT IT IS RELATED TO
THE LABOR AND BEING ABLE TO
HIRE.
IT SEEMS LIKE THE FUTURE FOR
MANY OF US AND I'M COMING FROM
THE CHILDHOOD CANCER WORLD AND
I'M SO PROUD OF THE WORK WE'RE
DOING IN THE CHILDHOOD CANCER
DATA INITIATIVE, BUT I'M A
LITTLE WORRIED ABOUT THAT
MANPOWER PIECE THAT WE ARE
COMPETING WITH FOR
MATHEMATICIANS AND DATA
SCIENTISTS AND BIOINFORMATICS
SPECIALISTS WHICH REALLY, I FEEL
LIKE ANY PART OF GOVERNMENT HAS
A HARD TIME ATTRACTING THAT
TALENT AND IT FEELS LIKE IT HAS
TO BE A BIGGER EMPHASIS ON THE
MISSION RATHER THAN THE PAYCHECK
TO BE ABLE TO POPULATE THOSE
REALLY IMPORTANT NEEDS TO BE
ABLE TO MOVE FORWARD.
YOU HAVE A THOUGHT ABOUT THAT?
>> YEAH, THANK YOU FOR THAT
QUESTION.
MY ONLY THOUGHT ON THAT IS THAT
YOU HIT IT EXACTLY RIGHT, THAT
PEOPLE WITH DATA SCIENCE SKILLS
ARE IN THE HIGHEST DEMAND OF
ANYBODY IN THE COUNTRY.
MY KIDS ARE NOW IN THEIR 20s
AND HAVE CHOSEN THEIR CAREERS
BUT IF THEY WERE YOUNGER, I
WOULD HAVE SAID LEARN COMPUTER
SKILLS AND GO INTO DATA SCIENCE,
PAUSE THEREBECAUSE THERE'S SO MO
THERE, THAT MAKES IT VERY
COMPETITIVE FOR US.
THAT'S TRUE IN ACADEMIA AS WELL.
THERE ARE NOT ENOUGH OF THEM TO
GO AROUND.
BUT I THINK YOU'RE TOTALLY
RIGHT, THAT THE MISSION IS WHAT
WILL GET PEOPLE EXCITED.
THAT'S WHAT I'VE SEEN IN MY TIME
SO FAR AT NCI.
I'VE NEVER SEEN PEOPLE MORE
MISSION-DRIVEN AND REALLY
DEDICATED TO MAKING A HUGE
DIFFERENCE.
I THINK WE HAVE TO TEACH OUR
DATA SCIENTISTS AS WELL TO
REALIZE THAT THAT CAN BE A BIG
PART OF THEIR CAREER.
SO I HEAR YOU LOUD AND CLEAR,
BUT IT IS HIGH ON MY WORRY LIST
OF DATA SCIENTISTS.
>> IT IS TRUE, BOTH MY SON AND
DAUGHDAUGHTER-IN-LAW ARE PH.D.
MATHEMATICIAN DATA SCIENTISTS
AND THEY LEFT ACADEMIA AND IT'S
GOING TO BE TOUGH.
>> YEAH.
IT WILL ALSO TAKE US LEARNING
HOW TO PARTNER WITH THOSE
COMPANIES THAT HAVE THE TALENT
AND HELPING THEM WANT TO BE PART
OF THE MISSION AS WELL.
>> BOB, YOU HAD A QUESTION?
>> SURE, A QUICK ONE.
NOW THAT YOU'VE BEEN HERE 2 1/2
MONTHS OR SO, WHAT'S BEEN YOUR
BIGGEST SURPRISE?
>> OH!
THAT'S GOOD.
MY BIGGEST SURPRISE.
UM, BUT THERE ARE NOT VERY MANY
COFFEE SHOPS ON THIS REALLY HUGE
CAMPUS.
[LAUGHTER]
THAT'S PROBABLY MY BIGGEST
SURPRISE, BUT NOW I'VE FOUND
ANOTHER ONE SO THAT'S GOOD.
YOU KNOW, I THINK WHAT I WAS
JUST SAYING ABOUT THE MISSION OF
THE PLACE, I THINK I KNEW THAT,
BUT I -- AND I CAME FROM, YOU
KNOW, ACADEMIC MEDICAL -- WE
THOUGHT WE WERE MISSION-DRIVEN?
IT IS A LOGSCALE DIFFERENT HERE.
AND I LOVE THE WAY THAT IT
PERMEATES, IT'S NOT JUST THE
SCIENTISTS AND THE DOCTORS WHO
ARE MISSION-DRIVEN.
IT'S EVERYBODY.
IT'S LITERALLY EVERYONE THAT I
TALK TO WHO WORKS HERE.
THEY KNOW THEY'RE AT THE NCI OR
THE NIH, YOU KNOW, AND I RODE
THE BUS THIS MORNING BECAUSE I
HIT MY -- MY KNEE IS NOT GOOD
TODAY, AND THE BUS DRIVER WAS
TALKING ABOUT SHE HEARD THAT I
WAS AT THE NCI AND SHE WANTED TO
TALK ABOUT WHAT WE WERE DOING IN
CANCER.
I MEAN, PEOPLE HERE ARE
REALLY -- THEY'RE ALL IN.
I LOVE IT.
>> I HAVE A QUESTION ABOUT
SOMETHING THAT YOU DIDN'T COVER,
BUT WE'RE HEARING THAT THE BOARD
OF SCIENTIFIC ADVISERS HAVE A
NEW WORKING GROUP ON COMMUNITY
CANCER CARE RESEARCH AND EQUITY.
CAN YOU TALK A LITTLE BIT ABOUT
THE ANTICIPATED DELIVERABLES
AND --
>> YEAH, ABSOLUTELY.
THAT'S ONE OF THE THINGS I'M
EXCITED ABOUT BECAUSE I'VE ONLY
BEEN HERE 2 1/2 MONTHS SO I
HAVEN'T DONE THAT MANY THINGS.
AND STARTING A WORKING GROUP IS
JUST MORE ABOUT GETTING
INFORMATION.
SO -- SO THIS CAME FROM MANY
CONVERSATIONS THAT I HAD IN
EARLY WEEKS WHERE PEOPLE TALKED
ABOUT WHAT ARE WE DOING OR HOW
CAN WE GET CLINICAL TRIALS OR --
INTO RURAL AMERICA OR INTO
UNDERSERVED PARTS OF THE UNITED
STATES OR HOW DO WE ADDRESS THE
GROSS HEALTH INEQUITIES.
IN SOME CANCERS -- THERE WAS A
REPORT RECENTLY ON SOME CANCERS
SHOWING THAT THE DEATH RATES IN
THE SAME CANCER IN NASHVILLE
COMPARED TO THE SURROUNDING
AREA, WHICH IS MY HOME, AND I
FELT RESPONSIBLE FOR ALL OF
THOSE PEOPLE IN THE GREATER MID
SOUTH AROUND NASHVILLE, BUT IT'S
VERY DIFFERENT.
SO THAT'S NOT RIGHT.
THE TOOLS ARE THERE TO BE ABLE
TO TAKE BETTER CARE OF PATIENTS
THAN THAT.
SO AS WE LOOKED AROUND AT WHAT
WERE OPTIONS AND WHAT HAD BEEN
DONE BEFORE, WHAT HAD BEEN
TRIED, WE REALIZED WE DIDN'T
HAVE ENOUGH INFORMATION.
AND SO THIS IS A WORKING GROUP.
IT IS BEING CO-CHAIRED BY THE
AMERIAMERICAN CANCER SEW SOAT BE
AMERICAN CANCER SOCIETY BECAUSE
THEY HAVE GRASSROOTS
RELATIONSHIP WITH THE COMMUNITY,
AND RAY OSIBIGARIAN WHO IS WITH
NCORP AND BSA LEADER, SO THE TWO
OF THEM ALREADY REPRESENT A LOT
OF WHAT WE THOUGHT WE KNEW
ALREADY, BUT THERE'S A LOT MORE,
SO THE REST OF THE COMMITTEE IS
THERE TO TRY TO SUPPORT REALLY
LOOKING AT WHAT ALL THE
RESOURCES ARE, WHAT CAN WE DO
WITH EXISTING RESOURCES BECAUSE
WE'RE RESOURCE-LIMITED AT THE
MOMENT, BUT WHAT COULD WE DO IF
WE HAD THE RIGHT RESOURCES, AND
WHAT ARE MORE INNOVATIVE WAYS TO
MOVE FORWARD.
SO IT'S REALLY FACT-FINDING AT
THIS POINT.
THE DELIVERABLES, I HAVE SORT OF
A LIST OF INFORMATION THAT I
WANT THEM TO COME BACK WITH AND
SOME SUGGESTIONS, NOT TO WRITE
THE GRANT BUT TO COME UP WITH A
DIRECTION THAT THEY THINK THAT
WE NEED TO GO.
AND THEY HAVE A SIX-MONTH
TIMELINE.
THEY HAVE NOT BEEN FORMULAE
CHARGED YET, THE CLOCK HASN'T
START THE TICKING SO IT WILL BE
SIX MONTHS FROM A MONTH FROM
NOW.
BUT I'M REALLY EXCITED TO HEAR
WHAT THEY LEARN.
I WISH I COULD BE A FLY ON THE
WALL AT ALL THEIR MEETINGS.
>> THAT'S EXCITING.
>> ANOTHER QUESTION RELATED TO
BUDGET.
WE TALKED ABOUT INTRAMURAL
ISSUES, THRAS AN NCTN GRANT
BUDGET ISSUE, THERE'S ALSO A
PAYLINE ISSUE.
JUST LIKE INTRAMURAL PEOPLE,
PEOPLE AREN'T GETTING GRANTS
EXTRAMURALLY, THEY'RE GOING TO
LEAVE THE FIELD.
I KNOW IT'S A BALANCING ACT,
INTRAVERSUS EXTRA, BUT HOW ARE
YOU REALLY GOING TO BALANCE
THAT, ESPECIALLY IN A TIME OF
CONSTRAINED BUDGETS ANYWAY?
>> I CAME FROM THE EXTRAMURAL
WORLD.
I HAD TWO R01s UP UNTIL
DECEMBER 17TH OF THIS YEAR, SO I
KNOW HOW IT IS TO LIVE ON THAT
PAYLINE.
I KNOW WHAT IT IS FOR THE K
AWARDEES WHO ARE LOOKING FOR THE
GRANT THAT'S GOING TO GET THEM
THE JOB.
MY HUSBAND IS STILL AN
R01 FUNDED INVESTIGATOR.
SO NO NCI GRANTS FOR HIM
ANYMORE, BUT HE HAS OTHER GRANTS
AND I GET TO HEAR ABOUT
GRANT-WRITING ALL THE TIME.
SO I LIVE AND BREATHE THAT
WORLD.
I KNOW THE DIFFERENCE BETWEEN 9%
AND 10%, THAT THERE IS A
PSYCHOLOGICALLY VERY LARGE
DIFFERENCE THERE.
I HAVE TO TRY TO KEEP ALL OF THE
COMPONENTS MOVING, AND THAT'S
ABOUT ALL I CAN SAY AT THIS
POINT.
WE REALLY NEED A BUDGET SO I CAN
MAKE A FIRM STATEMENT ABOUT
WHERE WE'RE GOING TO TAKE A
PAYLINE.
>> THANK YOU SO MUCH FOR
SPENDING SOME TIME WITH US.
I'M GOING TO TAKE THE LIBERTY OF
ASKING THE LAST QUESTION.
SO I LOVE HOW YOU SEE CANCER
RESEARCH AS BEING A TEAM.
AND THAT YOU HAVE WORKED WITH
THAT BECAUSE IN THE PAST, --
VALUE THE CONTRIBUTIONS THAT WE
MAKE.
WHAT DO YOU SEE THE ADVOCATES'
ROLE ON THE TEAM?
>> SO EVERY TEAM NEEDS TO HAVE
AN ADVOCATE.
I THINK -- SO WE CAN'T MAKE
PROGRESS UNLESS WE KNOW WHERE TO
PUT OUR EFFORTS.
I FEEL LIKE ADVOCATES ARE
TELLING US WHAT'S REALLY
IMPORTANT, WHERE IS THE BURNING
FIRE TODAY, YOU KNOW, WE MIGHT
FEEL LIKE WE CAN SMELL THE SMOKE
BUT WHERE IS THE FIRE IS WHERE
WE'RE GOING TO MAKE THE BIGGEST
DIFFERENCE.
SO I THINK WE HAVE THEM THERE.
THE THREE ADVOCATES THAT I
TALKED ABOUT, WHERE DID THEY
MAKE A BIG DIFFERENCE?
IT WAS PARTLY RAISING AWARENESS,
BUT THEY WERE THE ONES WHO WERE
SAYING WE KEEP TALKING TO
DOCTORS WHO HAVE NEVER HEARD OF
THIS, SO WE REALIZED WE HAD TO
START A CAMPAIGN TO TEACH
DOCTORS TO KNOW WHAT THIS WAS
ALL ABOUT.
TO MAKE THIS A PART OF THEIR
NORMAL VOCABULARY, EVEN IF IT
WAS A PIECE THEY WOULDN'T SEE
FOR MAYBE THEIR ENTIRE LIFETIME,
BUT THEY KNEW IT.
BECAUSE THERE ARE OTHER DISEASES
WE'VE NEVER HEARD OF, THAT WE'VE
NEVER SEEN.
>> ON OUR END, THERE'S A LOT OF
DIFFERENT TYPES OF ADVOCACY.
WE'VE GOT PEOPLE WHO ARE RAISING
WEARNESS, I RIB RIBBON CUTTINGSD
PEER SUPPORT AND EVERYONE ELSE'S
TABLE IS INVOLVED IN LIKE THE
RESEARCH ADVOCATE ACTIVITIES
WHICH CAN BE A LITTLE BIT
DIFFERENT AND WHO HAVE ACCESS TO
TRAINING HOW TO DO IT, ACCESS TO
OPPORTUNITIES, AND ACCESS TO
MENTORSHIP.
WE HAD A DISCUSSION, YOU KNOW,
IT'S NOT JUST WHAT WE NEED TO
KNOW BUT HOW TO ENGAGE IN THE
ROLE OF EVIDENCE-BASED MEDICINE.
>> LET ME TELL YOU ANOTHER
ADVOCACY STORY, A VERY SHORT
ONE.
SO I MET AN ADVOCATE FOR KIDNEY
CANCER ONLINE.
SHE SEEMED FUN AND INTERESTING
AND SHE'S A SOFTWARE ENGINEER,
SO -- SHE'S ABOUT THE AGE OF ALL
OF OUR GRADUATE STUDENTS AND
POSTDOCS IN MY LAB AND MY
HUSBAND'S LAB HAS ALWAYS DONE AN
ANNUAL RETREAT WHERE WE SPEND
THREE DAYS IN A LAB MEETING AND
WE JUST THINK IT'S WONDERFUL.
IT IS, YOU GET EVERYBODY
TOGETHER, THEY COME FROM VERY
DIFFERENT BACKGROUNDS AND THEY
THINK HARD ABOUT WHERE THEY'RE
GOING WITH THEIR PROJECTS GOING
FORWARD, AND THERE'S
IMMUNOLOGISTS AND BASIC
SCIENTISTS AND EVERYTHING IN
BETWEEN.
AND SO WE INVITED HER TO COME
AND SHARE HER EXPERIENCE WITH
US.
WE SAID YOU DON'T HAVE TO STAY
FOR THREE DAYS OF THE LAB
MEETING AND SHE SAID OH, I WANT
TO BE THERE FOR THE WHOLE TIME.
AND SHE WAS PHENOMENAL.
AND HER STORY REALLY RESONATED
WITH SOME PEOPLE WHO ARE
STUDYING MITOSIS, RIGHT?
THEY ARE STUDYING HOW
CHROMOSOMES SEPARATE, REALLY FAR
REMOVED FROM CANCER, REALLY
SEPARATE, AND THEY FOUND HER
STORY TO BE INSPIRATIONAL FOR
THEIR WORK, AND THEN SHE ASKED A
TON OF QUESTIONS IN OUR SESSION,
AND SHE FORCED THE GRADUATE
STUDENTS TO SPEAK IN A NORMAL
LANGUAGE AND TO REALLY THINK
ABOUT WHAT THEY'RE DOING, AND I
THINK IT HELPED THEM DEVELOP
THEIR OWN PROJECTS BY EXPLAINING
TO SOMEONE WHO WAS OUTSIDE OF
THEIR ZONE.
SO I THINK THAT ADVOCATES HAVE
ROLES IN ALL DIFFERENT KINDS OF
PLACES.
>> THANK YOU SO MUCH FOR THAT.
>> I JUST WANTED TO ADD, YOU
KNOW, WE'RE TALKING ABOUT
DIFFERENT WAYS ADVOCATES ENGAGE,
YOU ALSO MENTIONED THE BSA
WORKING GROUP RELATED TO
COMMUNITY CANCER CARE.
THERE WILL BE ADVOCATES ON THAT
WORKING GROUP OR INVITATIONS
HAVEN'T GONE OUT, THINGS STOOD
UP, IS THAT SOMETHING YOUR TEAM
HAS ASKED FOR -- [INAUDIBLE]
COMPONENT OF THAT ISSUE?
>> THANKS FOR BRINGING THAT UP.
I DID WANT TO SAY, THE NAMES
HAVEN'T BEEN LISTED -- HAVEN'T
BEEN RELEASED YET BUT WE'VE BEEN
TALKING WITH AMY TOO TO MAKE
SURE THAT WE'VE GOT SOMEONE ON
THAT COMMITTEE WHO WILL BE --
AND THEY MIGHT SAY NO, SO IT
COULD BE SOMEONE ELSE.
SO WE'LL JUST SEE.
>> THANK YOU SO MUCH.
WE JUST APPRECIATE THE TIME
YOU'RE SPENDING WITH US AND
EVERYTHING THAT YOU'RE DOING ON
BEHALF OF PEOPLE WITH CANCER AND
GETTING THE RESEARCH AND JUST
OPERATING -- YOU KNOW, M
COULDING TO THIS SPACE IN A VERY
DIFFICULT BUDGET TIME.
SO THANK YOU FOR ALL THAT YOU
DO.
AND WHILE WE'RE TRANSITIONING TO
THE NEXT SPEAKER, WE HAVE A
MEMBER WHO HAS JOINED AND WE'D
LIKE TO GIVE MELINDA A CHANCE TO
INTRODUCE YOURSELF.
WE WENT AROUND THE TABLE EARLIER
JUST GIVING OUR NAMES, BASIC
ORGANIZATION AND WE'RE FROM.
SO WELCOME, MELINDA.
GOOD TO SEE YOU.
>> GOOD TO SEE YOU GUYS.
I'M SORRY I'M NOT WITH YOU, I AM
BELINDA BACHINI FROM BILLINGS,
MONTANA, AND I AM THE DIRECTOR
OR CHIEF PATIENT OFFICER WITH
THE CHOLANGIOCARCINOMA
FOUNDATION.
HAPPY TO BE HERE AND ENJOYED
YOUR SPEECH.
THANK YOU SO MUCH.
>> THANK YOU, MELINDA.
AND I GUESS WE CAN GET SET UP
FOR OUR NEXT SPEAKER.
NEXT WE ARE WELCOMING DR. LORI
MINASIAN, DEPUTY DIRECTOR OF THE
NCI DIVISION CANCER PREVENTION
WHO'S GOING TO TALK ABOUT THE
CANCER SCREENING RESEARCH
NETWORK.
WE FIRST HEARD ABOUT THIS FROM
DR. CASSELL AND THEN DR. LOWY SO
WE'VE BEEN FOLLOWING ALONG WITH
SOME EXCITING THINGS THAT ARE
HAPPENING HERE AND WE'RE LOOKING
FORWARD TO HEARING MORE.
THANK YOU SO MUCH.
>> THANK YOU.
CAN YOU HEAR ME?
OKAY.
IT'S A PLEASURE TO BE HERE
TODAY.
I'M GOING TO WALK YOU THROUGH
SORT OF OUR THINKING AND THE
DEVELOPMENT OF THE CANCER
SCREENING RESEARCH NETWORK.
PLEASE FEEL FREE TO ASK
QUESTIONS AND I WOULD REALLY
LIKE YOUR INPUT.
BY THE END OF TODAY TOURING THE
DISCUSSION, IF YOU CAN TELL ME
WHAT YOU THINK I NEED TO KNOW
GOING FORWARD, AS WE BRING THIS
VERY COMPLEX INITIATIVE FORWARD.
SO ON BEHALF OF NCI'S
MULTI-CANCER DETECTION TRIAL
TEAM, WHICH IS QUITE A LARGE
TEAM, SPANNING NOT JUST THE
DIVISION CANCER PREVENTION BUT
WE HAVE MEMBERS FROM THE
DIVISION OF CANCER CONTROL AND
POPULATION SCIENCES, THE
DIVISION OF CANCER TREATMENT AND
DIAGNOSIS, WE HAVE MEMBERS FROM
THE CENTER FOR STRATEGIC
INITIATIVES, WE HAVE FDA
MEMBERS, CMS MEMBERS, MEMBERS
FROM THE OFFICE OF ADVOCACY
RELATIONS, AND THE OFFICE OF
COMMUNICATIONS.
SO TODAY'S TALK, I'M GOING TO
DIVIDE INTO A COUPLE OF
DIFFERENT SECTIONS.
FIRST WHAT ARE MULTI-CANCER
DETECTION ASSAYS?
WHY DOES NCI NEED TO STUDY
THESE?
SPECIFICALLY FOR CANCER
SCREENING.
THE DEVELOPMENT OF THE NEW
CANCER SCREENING RESEARCH
NETWORK, AND WHAT -- AND OUR
NEXT STEPS.
SO WHAT ARE THESE ASSAYS?
THEY'RE ESSENTIALLY BLOOD TESTS
THAT MEASURE DIFFERENT BIOLOGIC
SIGNALS IN YOUR BLOOD.
THESE SIGNALS COULD BE CHANGES
IN DNA SUCH AS METHYLATION,
FRAGMENTATION, MUTATIONS, DNA
MUTATIONS FROM TUMORS.
THEY COULD BE RNA, THEY COULD BE
PROTEIN BIOMARKERS, THEY CAN
EVEN BE COMBINATIONS OF THOSE, A
LITTLE BIT OF PROTEIN BIOMARKER,
A LITTLE BIT OF MUTATIONS, THROW
IN SOME METHYLATION, ADD IT
TOGETHER, THAT'S YOUR ASSAY.
OKAY?
THE PRESUMPTION IS THAT THE
CANCER CELLS SECRETE THIS OR
RELEASE THIS INTO BODY FLUIDS
THAT ARE MEASURABLE.
THEY'RE BEING DEVELOPED RIGHT
NOW TO SCREEN FOR MULTIPLE
DIFFERENT CANCERS WITH ONE BLOOD
TEST, WITH A SINGLE BLOOD TEST.
THERE ARE TWO PARTS TO THESE
ASSAYS.
THE FIRST PART IS THE
BIOCHEMICAL MEASUREMENT.
THE SECOND PART IS A SOFTWARE
ALGORITHM THAT THE COMPANIES
DEVELOP WHICH DETERMINES THE CUT
POINTS, WHAT'S A POSITIVE TEST
AND WHAT'S A NEGATIVE TEST.
SO IN THE PUBLIC DISCUSSION,
THESE ARE TYPICALLY CALLED
MULTI-CANCER EARLY DETECTION
ASSAYS.
AND AD AT SOME POINT EARLY ON WN
WE WERE TALKING, DR. DOUG LOWY
SUGGESTED THAT MAYBE WE DON'T
KNOW SPECIFICALLY THAT THESE
ASSAYS ARE, IN FACT, DETECTING
CANCER SUFFICIENTLY EARLY ENOUGH
TO MAKE A DIFFERENCE, SONIC IS
MOVING FORWARD CALLING THE
MULTI-CANCER DETECTION ASSAYS
UNTIL WE KNOW -- UNTIL WE HAVE
SUFFICIENT EVIDENCE THAT THEY
TRULY DIAGNOSE THEM AT EARLY
STAGES.
OKAY.
THIS IS A TABLE THAT IS NOT
INTENDED FOR YOU TO READ ALL OF
THE INFORMATION, BUT ON THE FAR
LEFT, YOU CAN SEE A VARIETY OF
DIFFERENT COMPANIES.
THERE ARE MULTIPLE DIFFERENT
COMPANIES DEVELOPING DIFFERENT
ASSAYS.
IN THE TECHNOLOGY SIDE, YOU CAN
SEE THAT THERE ARE VARIOUS
DIFFERENT TECHNOLOGIES.
THEY'RE NOT ALL THE SAME
TECHNOLOGY.
THIS TABLE WAS DEVELOPED BY
LOOKING AT PUBLICLY AVAILABLE
DATA, AND THEN ON THE RIGHT, YOU
SEE THE CANCER TYPE THAT EACH OF
THESE ASSAYS CLAIM TO DETECT.
OKAY?
SO THE KEY IS THAT IT'S A
PATCHWORK.
THEY DETECT DIFFERENT KINDS OF
CANCERS, SOME OF IT BASED UPON
THE DIFFERENT TECHNOLOGY THAT
THEY'RE USING.
SO YOU HAVE A BLOOD TEST, IT'S
RUN, AND IT'S POSITIVE.
WHAT DOES THAT MEAN?
DOES IT MEAN YOU HAVE CANCER?
IT'S A SIGNAL THAT YOU MIGHT
HAVE CANCER.
IT'S A PREDICTION THAT YOU MIGHT
HAVE CANCER.
SO IF YOU HAVE A POSITIVE
FINDING, THE NEXT THING YOU KNOW
IS THAT YOU'LL NEED ADDITIONAL
WORKUP.
IT'S NOT DIAGNOSTIC.
OKAY.
SO WHAT DOES IT MEAN?
A POSITIVE SIGNAL MEANS THAT YOU
WILL NEED ADDITIONAL DIAGNOSTIC
FOLLOW-UP.
THERE MIGHT BE CANCER.
IN POINTING TO WHAT DIAGNOSTIC
WORKUP YOU HAVE, THERE ARE TWO
WAY FOS S TO GO ABOUT IT.
IF YOU'RE A WOMAN AND YOU HAVE A
MAMMOGRAM, AND YOU HAVE A
ABNORMALITY ON YOUR MAMMOGRAM,
TYPICALLY YOU'LL HAVE ADDITIONAL
BREAST IMAGING OR YOU'LL HAVE A
BIOPSY AND BASED UPON THAT
IMAGE, THE DOCTOR WILL KNOW
WHERE TO BIOPSY.
BUT YOU'VE GOT A BLOOD TEST
THAT'S POSITIVE, WHERE DO YOU
BEGIN?
SOME OF THESE ASSAYS POINT TO A
SPECIFIC ORGAN TO START YOUR
DIAGNOSTIC WORKUP.
SO THEY'LL SAY IT'S A POSITIVE
TEST AND THE FIRST PREDICTOR OR
ORGAN TO LOOK AT IS BREAST.
MAYBE SECOND IS COLON.
MAYBE THIRD IS SOMETHING ELSE.
SO THAT THE PHYSICIAN HAS SOME
AREA TO START THAT DIAGNOSTIC
WORKUP.
OTHERS DON'T GIVE YOU A TISSUE
OF ORIGIN PREDICTION.
THE NEXT STEP, THEN, IS WHOLE
BODY IMAGING.
THAT CAN BE A WHOLE BODY MRI,
THAT CAN BE A PET CT.
THAT'S THE NEXT STEP.
OKAY.
WHAT DOES A NEGATIVE TEST MEAN?
A NEGATIVE TEST MEANS EITHER
THAT THERE IS NO SIGNAL THAT IS
MEASURED, THOSE BIOCHEMICAL
MEASUREMENTS WERE NOT FOUND IN
BLOOD AT THE TIME THEY WERE
DRAWN AND AT THE TIME THE ASSAY
WAS RUN.
OR THERE WAS A LITTLE BIT OF A
SIGNAL BUT IT DIDN'T REACH THAT
CUT POINT.
THINK OF A PSA.
A PSA OF 1 AS OPPOSED TO 5.
DOES A NEGATIVE TEST MEAN
THERE'S NO CANCER?
THERE ARE A COUPLE OF
PUBLICATIONS OUT THERE, THE
LARGEST ONE RIGHT NOW IS A PATH
PATHFINDER STUDY WHICH WAS
PUBLISHED IN AUGUST IN LANCET
AND THERE WERE, IN FACT,
PARTICIPANTS THAT WERE DIAGNOSED
WITHIN A YEAR OF HAVING THAT
WITH A CANCER.
SO A NEGATIVE TEST DOESN'T
NECESSARILY INDICATE THAT YOU
DON'T HAVE CANCER.
GOING BACK TO OUR SLIDE WITH THE
DIFFERENT TECHNOLOGIES, MAYBE
THE CANCER TYPE THAT PERSON
DEVELOPED JUST WAS NOT
MEASURABLE BY THAT TECHNOLOGY.
OKAY.
ARE THERE QUESTIONS SO FAR?
IT COMPLICATED, IT REALLY IS.
SO WHY DOES NCI NEED TO STUDY
THESE SPECIFICALLY FOR CANCER
SCREENING?
THIS SHOULD BE PRETTY FAMILIAR
TO MOST OF YOU AROUND THE TABLE.
WE KNOW THAT THERE'S CANCER
SCREENING THAT EXISTS FOR A
HANDFUL OF DISEASES.
FOR BREAST CANCER, PROSTATE
CANCER, LUNG CANCER, COLORECTAL,
CERVICAL CANCER.
AND YOU CAN SEE THAT TYPICALLY
THE MOST COMMON CANCERS ARE THE
ONES THAT WE SCREEN FOR.
WE ALSO KNOW THAT THESE CANCER
ARE RESPONSIBLE FOR SOME OF THE
LARGEST MORTALITY, LUNG CANCER
BEING THE CANCER ON THIS LIST
THAT HAS THE LARGEST AMOUNT,
THAT CONTRIBUTED THE MOST TO
CANCER MORTALITY.
BUT WE ALSO KNOW THAT MORE THAN
HALF THE CANCER DEATHS ARE FROM
SITES, OR ORGAN SITES, THAT HAVE
NO SCREENING TESTS AT ALL,
INCLUDING DEADLY CANCERS SUCH AS
PANCREATIC AND OVARIAN CANCER.
SO WE NEED MORE SCREENING TESTS.
AND WE NEED EASY SCREENING
TESTS.
HOW COULD THESE POTENTIALLY HELP
US?
SCREENS AT ORGAN SITES
CURRENTLY -- WE COULD
POTENTIALLY SCREEN FOR MULTIPLE
ORGAN SITES THAT WE DON'T HAVE
SCREENING FOR, AND THAT'S A GOOD
THING.
THESE TESTS MAY POTENTIALLY
DETECT CANCERS THAT ARE HARD TO
IDENTIFY.
THEY MAY ALSO POTENTIALLY
IDENTIFY CANCERS FROM DIFFERENT
SITES IN A SIMPLE, CONVENIENT,
EASY WAY.
AND MANY OF YOU MAY HAVE HEARD
"IT'S JUST A BLOOD TEST."
AND THEY RELY ON A BLOOD DRAW
THAT MAY BE VERY ACCEPTABLE TO
PATIENTS AS OPPOSED TO A
COLONOSCOPY, AS OPPOSED TO SOME
OTHER TEST THAT'S A BIT MORE
CHALLENGING TO GET.
BUT DO WE KNOW ENOUGH ABOUT
THESE ASSAYS AND HOW THEY WORK
TO SAY, YES, LET'S PUT THEM OUT
THERE TOMORROW?
IS THERE ENOUGH FOR THESE TO BE
USED TODAY IN PRACTICE?
THERE'S STILL A LOT OF
UNANSWERED QUESTIONS.
WILL USING THESE TESTS IN PEOPLE
WITHOUT SYMPTOMS SAVE LIVES?
WILL IT ACTUALLY REDUCE CANCER
MORTALITY?
WHAT KIND AND HOW MANY
DIAGNOSTIC TESTS ARE NEEDED FOR
DIAGNOSIS?
DO WE KNOW?
DOES IT DIFFER BY ORGAN SITE?
WHAT HAPPENS IF YOU HAVE A
POSITIVE MCD ASSAY, YOU GO
THROUGH THE WORKUP AND THERE'S
NO CANCER, AND ABOUT TWO THIRDS
OF THE PATIENTS IN THE
LITERATURE WILL HAVE NO CANCER
AFTER A POSITIVE TEST.
SOME OF THE COMPANIES ARE SAYING
DO A BLOOD TEST EVERY SIX
MONTHS.
SOME CLINICS ARE BEING SET UP TO
SAY LET'S IMAGE PEOPLE ON AN
ONGOING BASIS, LET'S FIND OUT
WHAT'S GOING ON.
HOW SOON AFTER A POSITIVE WITH A
NEGATIVE WORKUP DO YOU FIND
CANCER?
HOW MANY PEOPLE WILL BE
SUBJECTED TO UNNECESSARY
INVASIVE PROCEDURES IN ORDER TO
FIND OUT WHETHER OR NOT THEY
HAVE CANCER?
WILL PEOPLE STOP USING STANDARD
OF CARE SCREENING IN THE FACE OF
A NEGATIVE TEST?
I HAVE A NEGATIVE TEST, DO I
NEED THAT MAMMOGRAM?
WILL A BLOOD TEST MAKE SCREENING
MORE ACCESSIBLE OR EXACERBATE
DISPARITIES?
A BLOOD TEST IS EASY TO DO.
A FOLLOW-UP MRI MAY NOT BE SO
EASY TO DO.
SO WILL WE MAKE IT EASIER OR
WILL WE MAKE IT HARDER AND WILL
WE DROP OFF IN TERMS OF THE
DIAGNOSTIC WORKUP?
AND THEN WILL THESE ASSAYS LEAD
TO OVERDIAGNOSIS OF MORE
INDOLENT CANCERS OR WILL THEY
REALLY HELP US FIND THE MORE
AGGRESSIVE CANCERS THAT IF WE
INTERVENE, CAN MAKE A HUGE
DIFFERENCE?
WE DON'T KNOW THE ANSWER.
AND SOME ADDITIONAL TESTS, THERE
ARE FALSE NEGATIVES THAT WE NEED
TO UNDERSTAND.
THERE ARE FALSE POSITIVE RESULTS
THAT WE NEED TO UNDERSTAND.
NOW THESE ALREADY EXIST FOR
COLONOSCOPY, FORFEIT TESTS, FOR
MAMMOGRAMS, FOR PSA, BUT WE
UNDERSTAND HOW TO USE THEM IN A
WAY BECAUSE THERE'S SUFFICIENT
DATA OUT THERE.
AND THEN THERE'S THE POSSIBILITY
THAT EARLY DETECTION MAY NOT
MAKE A DIFFERENCE BECAUSE OUR
TREATMENT JUST ISN'T GOOD ENOUGH
RIGHT NOW.
AND HOW DOES THAT IMPACT, AND
WE'LL TALK A LITTLE BIT MORE
ABOUT THAT.
THE CURRENT STATUS OF THESE
ASSAYS TODAY, THE FOOD AND DRUG
ADMINISTRATION HAS NOT GIVEN
MARKET AUTHORIZATION TO ANY OF
THESE MCD ASSAYS.
THE MCD ASSAYS ARE NOT
REIMBURSED BY THE CENTERS FOR
MEDICARE, MEDICAID SERVICES, AND
IN A RECENT STUDY OF ABOUT 19
MAJOR PAYORS, NONE OF THEM HAVE
REPORTED COVERING.
SOME HOSPITAL SYSTEMS ARE
STARTING TO COVER IT KNOWING
THAT THEY WILL COVER THE WORKUP
WITHIN THEIR SYSTEM.
BUT THERE'S STILL -- IT STILL
EVOLVING.
AND THEN THERE ARE NO PRACTICE
GUIDELINES.
THERE ARE NO CLINICAL PRACTICE
GUIDELINES BECAUSE THERE'S
INSUFFICIENT DATA AT THIS TIME.
FOR DEVELOPMENT OF PRACTICE
GUIDELINES.
WHAT DO WE HAVE IN THE
LITERATURE TO DATE?
SO TWO OF THE PEOPLE ON OUR TE
TEAM, ELYSE LEEVAN, AND PAUL P
PINSKY, WHO HAS EXTENSIVE CANCER
VEENING EXPERTISE AND HAS BEEN
INVOLVED IN OUR STUDY, DID A
LITERATURE REVIEW LAST SUMMER
WHERE THEY LOOKED AT ALL OF THE
LITERATURE, THEY DID A
SYSTEMATIC REVIEW FOR THE
PREDICTIVE PERFORMANCE OF
CELL-FREE NUCLEIC ACIDS, WHAT DO
YOU SEE WITH THESE ASSAYS THAT
MEASURE NUCLEIC ACID?
AND TO DATE, THERE ARE ACTUALLY
RELATIVELY FEW PUBLISHED STUDIES
OUT THERE.
MOST OF THESE, WHEN YOU ACTUALLY
LOOK AT THE TABLE THAT THEY
CREATED, MOST OF THESE TESTS
ACTUALLY DETECT LATE-STAGE FAR
BETTER THAN EARLIER STAGE.
AND EVEN FOR THOSE CANCER TYPES,
WHEN AN MCD SAID THEY DETECT
FIVE DIFFERENT CANCER TYPES, THE
SENSITIVITY FOR EACH OF THOSE
CANCER TYPES WAS DIFFERENT.
AND IT DIFFERS BY STAGE AS WELL.
SO IT'S VERY COMPLEX.
THE HALLMARK OF THE SI CINQUINOE
IS THAT YOU SCREEN A POPULATION
BECAUSE ULTIMATELY THAT
SCREENING PROCESS WILL LEAD TO A
REDUCTION IN MORTALITY FROM THAT
DISEASE.
THAT'S WHY YOU INVEST IN
POPULATION-BASED SCREENING.
SO THE QUESTION WE DON'T KNOW IS
WILL SCREENING PEOPLE WITH THESE
TESTS ACTUALLY REDUCE DEATHS
FROM CANCER?
AND IN ORDER TO ACHIEVE THIS
GOAL, YOU REALLY NEED TO BE ABLE
TO DETECT EARLY STAGE OPTIMALLY.
SO WITH ALL OF THESE, DETECTING
EARLY STAGE HAS LOWER
SENSITIVITY THAN IN LATE STAGE.
IT MAY BE GOOD ENOUGH BUT IT
STILL LOWER.
AND IF THEY DON'T DO -- IF THESE
ASSAYS DON'T DO A GOOD JOB OR
DON'T DO A SUFFICIENTLY GOOD JOB
OF DETECTING THE CANCER AT THE
EARLIEST STAGE OR AT THE STAGE
IT'S TREATABLE, WILL IT, IN
FACT, HELP REDUCE DEATH AND
SUFFERING FROM CANCER?
AND REMEMBER, THESE DIFFERENT
CANCERS THAT WE'RE TALKING ABOUT
HAVE DIFFERENT NATURAL
HISTORIES.
THE NATURAL HISTORY FOR PROSTATE
CANCER IS VERY DIFFERENT THAN
THE NATURAL HISTORY FOR PAN
KREETIVE CANCER, OVARIAN CANCER.
SO THEY'RE NOT APPLES TO APPLES.
THEY'RE NOT EVEN DIFFERENT
FLAVORS OF APPLES.
THEY'RE APPLES AND ORANGES AND
THROW IN A TOMATO FOR GOOD
MEASURE.
YOU KNOW THEY HAVE DIFFERENT
NATURAL HISTORIES.
SO IT'S NOT ENOUGH TO JUST SAY
THEY MOVE FROM STAGE IV TO STAGE
III FOR ALL THESE DIFFERENT
CANCERS.
BECAUSE THE PROGNOSIS OF A
PATIENT WITH PANCREATIC CANCER
STAGE III IS DIFFERENT THAN THAT
PROGNOSIS FOR A PANCREATIC
CANCER PATIENT, PROSTATE CANCER
OR LYMPHOMA, VERY DIFFERENT.
SO HOW DO YOU PUT THEM ALL
TOGETHER?
THAT'S THE QUESTION.
AND THEN JUST TO MAKE THE POINT
A LITTLE BIT MORE, IN THE
PROSTATE CANCER LUNG AND
PREVENTION STUDY WHICH WAS
STARTED OUT IN THE 90s AND
REPORTED OUT IN THE 2010s, WE
SHOWED FROM THE U.S. STUDY THAT
SCREENING WOMEN WITH
TRANSVAGINAL ULTRASOUNDS AND
C125 DID NOT WORK, IT DID NOT
REDUCE MORTALITY BUT ABOUT HALF
OF THE WOMEN IN THE STUDY
ALREADY HAD OVARIES REMOVED,
SO -- BUT THE UK RAN A VERY
LARGE CANCER SCREENING STUDY
LOOKING AT OVARIAN CANCER,
LOOKING AT WOMEN, GENERAL
POPULATION, NOT HIGH RISK WOMEN,
GENERAL POPULATION WOMEN, WHERE
THEY RECRUITED OVER 200 THOWL
WOMEN, AND FOLLOWED THEM.
USED AN ALGORITHM THAT LOOKED AT
CL125 FIRST AND IT WAS ABNORMAL,
WENT ON TO HAVE A TRANSVAGINAL
ULTRASOUND, AND SHOWED THAT YOU
COULD SHIFT FROM LATE STAGE TO
EARLY STAGE OVARIAN CANCER.
WE ACTUALLY DID SHOW YOU REDUCE
THE NUMBER OF LATE STAGE DISEASE
AND INCREASE THE NUMBER OF EARLY
STAGE DISEASE, FOR WHICH THOSE
WOMEN THEN GOT TREATED.
BUT IT DID NOT CHANGE MORTALITY.
IF THIS STUDY WERE RUN TODAY,
MAYBE THINGS WOULD BE A LITTLE
BIT DIFFERENT BECAUSE THIS IS
ALL DRIVEN WHICH ABOUT HYBRID
SEROUS OVARIAN CANCER WHEN THIS
STUDY STARTED.
WE DIDN'T EVEN REALLY UNDERSTAND
HOW TO TREAT IT, WE KNOW BETTER
NOW BUT SO AT THIS POINT IN
TIME, WHAT WE HAVE IS THE U.S.
PREVENTIVE SERVICES TASK FORCE
HAS RECOMMENDED NO SCREENING FOR
AVERAGE RISK WOMEN FOR OVARIAN
CANCER.
SO THAT'S SORT OF THE EVIDENCE
BASE THAT IS USED TO GENERATE
POLICIES AND GUIDELINES.
SO HOW ARE WE NOW ADDRESSING
THIS?
KNOWING THAT WE BASICALLY NEED
TO GENERATE THE EVIDENCE TO
UNDERSTAND WHAT THESE ASSAYS ARE
ABOUT, HOW TO USE THEM.
OUR GOAL IS TO CREATE THE
EVIDENCE BASE TO UNDERSTAND HOW
THESE TOOLS WORK OR DON'T WORK,
HOW TO USE THEM IF THEY WORK,
HOW TO USE THEM TOGETHER OR BY
THEMSELVES, BECAUSE THEY MEASURE
DIFFERENT THINGS.
SO WHAT ARE WE DOING?
SO THE FIRST THING -- WELL, NOT
THE FIRST THING WE'VE DONE.
ACTUALLY WE'VE DONE SEVERAL
THINGS IN PARALLEL, BUT ONE OF
THE THINGS THAT JUST GOT STARTED
THAT WE LAUNCHED IN FEBRUARY IS
THE NEW CANCER SCREENING
RESEARCH NETWORK, WHOSE CORE
GOAL IS TO EVALUATE EMERGING
TECHNOLOGIES FOR THE PURPOSE OF
CANCER SCREENING.
WE'VE ENGAGED M CD DEVELOPERS
THROUGH THIS PROCESS BECAUSE THE
FIRST OPPORTUNITY FOR THE CANCER
SCREENING RESEARCH NETWORK IS A
PILOT STUDY, AND WE'VE ACTUALLY
BEEN PRETTY PLEASED WITH THE
RESPONSES THAT WE'VE HAD FROM
THE MCD ASSAY DEVELOPERS.
WE'VE BEEN COLLABORATING WITH
OTHER FEDERAL AGENCIES.
WE HAVE MEMBERS FROM FDA AND CMS
ON OUR TRIAL TEAM.
WE HAVE PARTICIPATION FROM VA
AND DOD AND MOST RECENTLY HAVE
COME TO FIND SOME
REPRESENTATIVES FROM HRSA AND
THE INDIAN HEALTH SERVICE THAT
WE'LL REACH OUT TO AS WELL.
SO WHAT DOES THE CANCER
SCREENING RESEARCH NETWORK LOOK
LIKE?
THE CORE OBJECTIVE IS TO
EVALUATE EMERGING TECHNOLOGIES
FOR CANCER SCREENING, TO CONDUCT
MULTICENTER CANCER SCREENING
TRIALS AND STUDIES IN DIVERSE
POPULATIONS, AND IN ORDER FOR US
TO MAKE THESE RESULTS
GENERALIZABLE TO THE AMERICAN
POPULATION.
EVALUATE EMERGING MODALITIES FOR
CANCER SCREENING WITH THE GOAL
OF REDUCING CANCER-RELATED
MORBIDITY AND MORTALITY.
EVALUATE STRATEGIES AND
APPROACHES TO RISK-BASED
SCREENING, SO THAT WE CAN
ULTIMATELY TAKE THIS FROM
EVERYBODY TO USE YOUR RISK FOR
CANCER, WHAT ARE THE OPTIMAL
ASSAYS THAT WE NEED TO USE IN
YOU, TO ASSESS YOUR -- TO SCREEN
YOU FOR CANCER.
AND THEN ULTIMATELY OVER TIME,
EVALUATE STRATEGIES TO IMPROVE
THE IMPLEMENTATION OF CANCER
SCREENING.
ONE OF THE DISAPPOINTMENTS IS
THE LACK OF UPTAKE, OF LOW DOSE
CT SCREENING FOR LUNG CANCER
WHEN IT'S BEEN CLEARLY
DEMONSTRATED TO REDUCE MORTALITY
FROM LUNG CANCER.
SO WE SPENT THE 2022 BASICALLY
WORKING AND GOING THROUGH ALL
THE DIFFERENT LEVELS OF
APPROVAL, PUTTING THIS TOGETHER,
WRITING THE RFA, AND THE RFAs
WERE RELEASED IN NOVEMBER OF
2022.
THE GOAL WAS TO HAVE DIFFERENT
ACCRUAL SITES, A COORDINATING
AND COMMUNICATION CENTER, AND A
STATISTICS AND DATA MANAGEMENT
CENTERMENT AND BECAUSE THIS IS
SUCH A CHALLENGING AREA TO WRAP
YOUR HEAD AROUND, WE WANTED TO
MAKE SURE THAT THE COORDINATING
CENTER HAD COMMUNICATIONS
EXPERTISE IN ADDITION TO KNOWING
HOW TO RUN THE TRIALS
THEMSELVES.
ONE OF THE THINGS THEY WILL BE
SETTING UP IN ADDITION TO
SETTING UP A COMMUNITY ADVISORY
BOARD, THEY WILL ALSO BE SETTING
UP A PATIENT PORTAL IN ADDITION
SO THAT WE CAN HAVE
PATIENT-SPECIFIC INFORMATION
GENERATED AS WELL.
SO WHEN WE CONCEIVED THIS, WE
SAID IF YOU LOOK AT THE BLUE
BANNER AT THE BOTTOM, WE WANTED
A VARIETY OF DIFFERENT
HEALTHCARE PRACTICES.
ACADEMIC CENTERS, HEALTHCARE
SYSTEMS, PRACTICE-BASED
NETWORKS, COMMUNITY NETWORKS.
WE WANTED TO SEE A SPECTRUM OF
THIS.
WE KNEW WE WERE STARTING THIS
OUT AS A PILOT AND WANTED TO BE
ABLE TO SEE WHAT THE EXPERIENCE
WAS IN DIFFERENT HEALTHCARE
SETTINGS IN THE U.S.
AND AGAIN, OUR COORDINATING AND
COMMUNICATIONS CENTER WILL HAVE
A PARTICIPANT ADVISORY BOARD AS
WELL AS A PORTAL FOR ARE
PARTICIPANTS -- PARTICIPANT
ENGAGEMENT AS WELL.
THIS IS OUR BRAND NEW GRAPHIC
RELEASED WHEN WE LAUNCHED THE
NETWORK.
AS YOU CAN SEE, WE HAVE OUR
GRANTEES LISTED, AND SO WE HAVE
OUR COMMUNICATION AND
COORDINATING CENTER IS THE FRED
HUTCH AND THE STATISTICS AND
DATA MANAGEMENT CENTER IS ALSO
AT FRED HUTCH, WHICH MAKES IT A
LITTLE EASIER, MAYBE.
AND THEN OUR ACCESS HUBS ARE
QUITE DIFFERENT.
IF YOU JUST LOOK AT THE TITLES,
THESE ARE THE AWARDEES OF THE
GRANT APPLICATION.
YOU CAN SEE HENRY FORD HEALTH
SYSTEM, AND THE MICHIGAN STATE
UNIVERSITY HEALTH SCIENCES AT
THE TOP WILL COME BACK.
KAISER NORTH AND SOUTH
CALIFORNIA.
OKLAHOMA.
THE UNIVERSITY OF OKLAHOMA.
THE UNIVERSITY OF COLORADO.
THE UNIVERSITY OF NORTH
CAROLINA, VIRGINIA COMMONWEALTH,
WASHINGTON UNIVERSITY IN
ST. LOUIS, THE DEPARTMENT OF
DEFENSE AND THE DEPARTMENT OF
THE VA.
SO THIS LOOKS LIKE THE USUAL
SUSPECTS.
WE PUT AN RFA OUT.
WE SAID WE WANT DIFFERENT
HEALTHCARE ENTITIES AND WE
FUNDED THE USUAL SUSPECTS.
RIGHT?
NOT REALLY.
EACH OF THESE ACCESS HUBS IS A
PACKAGE, A CONSORTIUM, IF YOU
WILL.
UNDER OUR SEVEN FUNDED ACCESS
HUBS, BECAUSE WE ARE NOT FUNDING
THE DOD AND WE ARE NOT FUNDING
THE VA.
THEY ARE BRINGING THEIR
RESOURCES TO THE TABLE TO HELP
US OUT BECAUSE THEY WANT TO
PARTICIPATE IN THIS ACTIVITY AND
THEY WANT TO BE A PART OF THIS
IMPORTANT PROJECT.
BUT UNDER OUR SEVEN FUNDED
ORGANIZATIONS, YOU WILL SEE THAT
WE HAVE ABOUT 15 FEDERALLY
QUALIFIED HEALTH CENTERS THAT
ARE FUNDED THROUGH HRSA.
THESE ARE HEALTHCARE CENTERS
WHERE PEOPLE WHO HAVE LIMITED TO
NO HEALTH INSURANCE ACTUALLY
SEEK THEIR DAY TO DAY
HEALTHCARE.
IN ADDITION, WE HAVE RURAL
SITES.
IF YOU LOOK AT VIRGINIA
COMMONWEALTH UNIVERSITY AND LOOK
AT THE PACKAGE THAT THEY HAVE
DEVELOPED, ESSENTIALLY THEIR
ACCRUAL ORGANIZATION IS THE
VIRGINIA COMMONWEALTH
UNIVERSITY.
THEY'RE HIRING A GROUP OF
PEOPLE, THEY'VE GOT CLINICS ALL
OVER THE STATE, AND THEY'RE
PLANNING TO SEND THEIR STAFF OUT
TO THE DIFFERENT CLINICS,
RECRUIT PARTICIPANTS THERE,
POTENTIALLY SEND THEIR BLOOD
FORWARD, ENGAGE PARTICIPANTS IN
THAT AREA, SO THAT THE RURAL
SITES DON'T HAVE TO BE
PARTICIPANTS, DON'T HAVE TO GO
THROUGH ALL THE REGULATORY
ISSUES FOR BEING INVESTIGATORS
IN OUR SYSTEM, BUT STILL TO BE
ACTIVELY ENGAGED IN THIS.
KAISER HAS A HIGHLY DIVERSE
POPULATION.
HENRY FORD HAS ALREADY
DEMONSTRATED, ACTUALLY ALL OF
THESE ORGANIZATIONS HAVE
DEMONSTRATED RECRUITMENT OF
HIGHLY DIVERSE POPULATIONS TO
OTHER CANCER PREVENTION, CANCER
SCREENING STUL DIS.
THE UNIVERSITY OF OKLAHOMA IS
ENGAGING AT LEAST ONE TRIBAL
NATION, POSSIBLY AS MANY AS
FOUR, DEPENDING.
THE BIGGEST CHALLENGE WE HAVE
WITH THAT IS UNDERSTANDING DAY
TO SOVEREIGNTY AND WE HAVE SOME
FOLLOW-UP CONVERSATIONS THAT WE
ARE GOING TO HAVE WITH THE PI
FOR THIS ACCESS HUB, AS WELL AS
REPRESENTATIVES FROM THE TRIBAL
NATIONS.
I CAN TELL YOU THAT THE
COMMUNITY ADVISORY BO BOARD THAT
FRED HUTCH IS STANDING UP
ALREADY ENGAGES AT LEAST ONE OR
TWO PATIENT ADVOCATES, ONE OF
WHOM IS A MEMBER OF A DIFFERENT
TRIBAL NATION.
WE HAVE A VARIETY OF DIFFERENT
SETTINGS.
SO THAT EVEN THOUGH YOU CAN SEE
WHEN YOU LOOK AT THEM, IT LOOKS
LIKE THE USUAL SUSPECTS.
WHEN YOU DIG DOWN, WE REALLY ARE
FINDING THAT THESE ORGANIZATIONS
HAVE BEEN VERY THOUGHTFUL IN
THEIR APPROACH TO HOW THEY'RE
GOING TO RECRUIT PARTICIPANTS.
THE VANGUARD STUDY.
THIS IS THE PILOT STUDY THAT WE
ARE STANDING UP HOPEFULLY IN
'24.
OKAY?
IT'S COMPLICATED.
WE INTEND TO RANDOMIZE
PARTICIPANTS TO ONE OF THREE
DIFFERENT ARMS.
ONE ARM IS A CONTROL ARM.
ONE ARM WILL BE MCD NUMBER 1.
AND THE SECOND -- THE THIRD ARM
WILL BE MCD NUMBER 2.
WE'RE NOT COMBINING MCDs.
ONE ARM PER MCD ASSAY.
EVERYBODY IS RANDOMIZED BECAUSE
THE FIRST OBJECTIVE OF THE
VANGUARD STUDY IS TO ASSESS
PARTICIPANT WILLINGNESS TO BE
RANDOMIZED TO THIS KIND OF A
DESIGN.
WHY WOULD WE HAVE PARTICIPANTS
BEING RANDOMIZED ALL THE TIME,
THE QUESTION IS IN THE CURRENT
ENVIRONMENT, WHERE WE HAVE OUR
PEOPLE JUST GOING TO GO AND GET
THESE ASSAYS IF THEY'RE
COMMERCIALLY AVAILABLE, OR ARE
THEY WILLING TO ENGAGE IN THE
RESEARCH OPPORTUNITY AND BE
WILLING TO RANDOMIZE IN THIS
PARTICULAR SETTING, THEIR RISK
WOULD BE 30%, 33%, A THIRD, RAN
RANDOMIZED TO THE CONTROL ARM.
OKAY.
EVERYBODY WILL BE OFFERED
STANDARD OF CARE SCREENING.
WE WILL CAPTURE ALL CANCERS.
WE'LL CAPTURE THEIR HISTOLOGY,
THEIR HISTOPATHOLOGY, THE
MARKERS THAT ARE ASSOCIATED WITH
IT.
IT DOESN'T MATTER WHETHER OR NOT
THOSE ASSAYS SAY THEY DETECT
THAT CANCER, WE WILL COLLECT ALL
CANCERS ACROSS THIS.
THE OTHER OBJECTIVES INVOLVE
DETERMINING ADHERENCE.
WILL THESE PARTICIPANTS FOLLOW
THROUGH?
WHAT ARE THE CHALLENGES, THE
BARRIERS, PARTICULARLY OUR FOLKS
IN THE FEDERALLY QUALIFIED
HEALTH CENTERS.
WE ACTUALLY EARLY ON HAD A
CONVERSATION WITH A WOMAN THAT
RUNS ONE OF THE FEDERALLY
QUALIFIED HEALTH CENTERS HERE IN
MARYLAND AND FOUND THAT SHE HAD
QUITE A FEW CHALLENGES.
THE MOST SIGNIFICANT CHALLENGE
SHE HAD WAS FINDING THE
RESOURCES SO THAT THESE
PARTICIPANTS COULD, IN FACT, GET
THE FOLLOW-UP FOR THE POSITIVE
TEST, WHATEVER IT WAS.
YOU KNOW, AN ABNORMAL MAMMOGRAM,
CAN THEY GET THE FOLLOW-UP FOR
THAT?
EVALUATE THE FEASIBILITY OF THE
PROTOCOL-DEFINED DIAGNOSTIC
WORKUPS.
WE'RE STILL TRYING TO FIGURE OUT
HOW WE SHOULD -- WHETHER WE
SHOULD GATHER THAT DATA, HOW WE
SHOULD ASSESS THAT.
DETERMINE THE RELIABILITY AND
THE TIMELINESS OF THE BLOOD
SPECIMEN TESTING AND RETURN BY
THE MCD COMPANIES.
WE'VE BEEN VERY FORTUNATE WITH
THE ENGAGEMENT OF THE M SAID
COMPANIES, BUT THAT'S ONE OF THE
OBJECTIVES OF THIS PILOT STUDY.
AND THEN IDENTIFY FACILITATORS
AND BARRIERS TO RECRUITING AND
RETENTION, TO RECRUITMENT AND
RETENTION AND COMPLIANCE OF
DIFFERENT PARTICIPANT GROUPS.
WE KNOW THERE ARE CHALLENGES, WE
NEED TO CODE GUY THEM, THERE MAY
BE UNIQUE ONES THAT WE NEED TO
KNOW ABOUT BEFORE WE LAUNCH A
MUCH LARGER TRIAL.
THIS IS DESIGNED TO BE VERY
PARALLEL, TO BE A MINI VERSION
OF THE VERY LARGE RANDOMIZED
CONTROL TRIAL THAT WE WOULD
ULTIMATELY LIKE TO RUN IF WE
HAVE THE RESOURCES.
WE'RE HOPING TO STEP THIS UP IN
A WAY THAT WE LEARN HOW BEST TO
DESIGN THAT TRIAL.
BECAUSE THE BIGGEST CHALLENGE
HERE IS WHAT IS THE DIFFERENCE
IN DESIGNING A SCREENING TRIAL
WHEN THE SCREENING MODALITY CAN
DETECT POSSIBLY MANY DIFFERENT
TYPES OF CANCER.
SO THAT'S WHAT WE'RE DEALING
WITH.
IN TERMS OF THINKING THROUGH THE
ANALYTIC DESIGN FOR THIS KIND OF
AN APPROACH.
THE ASSAY SELECTION PROCESS.
SO BEFORE WE EVEN GOT TO THE
WORKSHOP, WE HAD PEOPLE SAYING,
DO YOU EVEN KNOW THESE COMPANIES
ARE GOING TO WORK WITH YOU?
AND SO WE PUT OUT A REQUEST FOR
INFORMATION IN JANUARY '22 AND
HAD A NICE RESPONSE.
WE ENDED UP TALKING TO EVERY
SINGLE COMPANY THAT RESPONDED TO
US.
WE EVEN HAD A PARTICIPANT
RESPOND TO THE REQUEST FOR
INFORMATION, WANTED TO KNOW
WHERE TO SIGN UP.
AND IN FACT, THROUGH THIS WHOLE
PROCESS, IN FACT, AFTER THE
LAUNCH, THE PUBLIC LAUNCH,
ELYSSE LEEVAN WAS GETTING EMAILS
FROM PARTICIPANTS WANTING TO
KNOW HOW AND WHEN THEY COULD
SIGN UP.
SO THAT'S REASSURING AT MANY
DIFFERENT LEVELS.
BUT WE DID.
WE HAD COMPANIES COME TO US AND
SAY THEY WERE VERY INTERESTED,
THEY WANTED TO HAVE A
DISCUSSION, WE WALKED THROUGH,
AND THAT'S HOW WE LEARN THE SO
MUCH ABOUT SOME OF THESE
COMPANIES.
HOW, IN FACT, THE TECHNOLOGY IS
DIFFERENT POTENTIALLY.
THEY ARE MORE THAN HAPPY TO TALK
TO US ABOUT THE TECHNOLOGY.
IT'S A LITTLE MORE CHALLENGING
TO HAVE THEM TALK ABOUT THE
SOFTWARE ALGORITHM, WHAT'S A
POSITIVE AND WHAT'S A NEGATIVE.
SO WITH ALL THAT INFORMATION,
KNOWING THAT WE WOULD
POTENTIALLY HAVE PARTNERS, WE
DECIDED THAT WE NEEDED ACTUALLY
TO HAVE A FORMAL PROCESS FOR HOW
TO ENGAGE THEM, AND TO SELECT
THEM FOR THE VANGUARD STUDY.
SO WE HELD A VIRTUAL WORKSHOP
THAT WE INVITED -- WE PUT IT IN
THE GUIDE, WE INVITED AS MANY
PEOPLE NATIONALLY,
INTERNATIONALLY, WE SAID THERE
WAS NO LIMITATION, COME, LISTEN.
AND WE HAD, I THINK, 500 FEEM ON
THE VIRTUAL WEBINAR.
500 PEOPLE.
BUT EVEN BEFORE WE DID THIS, WE
ALSO SAID, OKAY, THERE'S NOT
MUCH PUBLISHED DATA.
HOW ARE WE GOING -- ARE WE JUST
GOING TO TRUST ALL THE ASSAY
COMPANIES?
OR ARE WE GOING TO, YOU KNOW,
HAVE SOME WAY OF TESTING?
SO WENT TO THE ALLIANCE FOR
ONCOLOGY CLINICAL TRIALS, AND
SAID WOULD YOU BE WILLING TO
PARTNER WITH US AND CREATE AN
MCD BIOBANK SO THEY DID, AND
DEVELOPED BASICALLY A PROTOCOL
THAT WAS -- BY BLOOD COLLECTION
FOR US TO SEND COMPANIES
SPECIMENS SO THEY COULD RUN
THEIR ASSAYS, GIVE US THE
RESULTS BACK IN A BLINDED
FASHION, AND WE'D HAVE AT LEAST
SOME MEASURE WITH WHICH TO
EVALUATE THEM.
THE ALLIANCE RECRUITED MORE THAN
A THOUSAND PERSONS WITH NO
EVIDENCE OF CANCER.
THEY RECRUITED ABOUT 800 TO
DATE, MAYBE 900 NOW, PERSONS
WITH NEWLY DIAGNOSED CANCER.
SO THEY SET UP A SYSTEM SO THAT
THEY GOT THEM THROUGH, AND IN
FACT WE ALLOWED THEM TO RECRUIT
PARTICIPANTS GOING TO SURGERY
WHO DIDN'T HAVE A DEFINITIVE
DIAGNOSIS OF CANCER, JUST SO WE
COULD MAKE SURE WE HAD
SUFFICIENT NUMBERS OF NEWLY
DIAGNOSED CANCERS, AND WE LOOKED
AT A SPECTRUM OF DIFFERENT KINDS
OF CANCERS.
THIS HAS BEEN JUST A FABULOUS
PARTNERSHIP.
THEY HAVE COME TO THE TABLE,
WORKED WITH US IN SUCH A
COLLABORATIVE WAY.
IT'S JUST BEEN A JOY.
THIS WAS DONE IN UNDER TWO YEA
YEARS.
SO IN THE ASSAY WORKSHOP, WE
HOSTED THE WORKSHOP.
WE SAID AT THE END OF THE
WORKSHOP, WE GAVE EVERYBODY A
DATE APPLICATIONS WERE DUE, AND
WE MADE THE APPLICATION PROCESS
RELATIVELY SIMPLE AND
STRAIGHTFORWARD.
WE REVIEWED ALL THE APPLICATIONS
AND THEN RANKED THE ASSAYS, WE
ALLOWED AN ASSAY COMPANY TO
SUBMIT MORE THAN ONE ASSAY TO
US, AND WE HAD A COUPLE OF
COMPANIES SUBMIT MORE THAN ONE
ASSAY.
REVIEWED ALL THE INFORMATION,
THE ASSAY WORKING GROUP REVIEWED
ALL THE INFORMATION AND THEN WE
NARROWED IT DOWN TO A SMALLER
GROUP OF MCD ASSAY DEVELOPERS
AND STARTED MEETING WITH THEM TO
SAY OKAY, HERE'S THE NEXT STEP.
NOW MIND YOU, THEY'RE ALL DOING
THIS ON THEIR OWN.
WE'RE NOT PAYING THEM TO DO
THIS.
THIS IS PART OF THE PROCESS BY
WHICH WE'LL GO THROUGH AND TELL
THEM, YOU KNOW, HOW WE'LL RANK
THEM.
SO AS I STAND HERE TODAY, THE
ALLIANCE SPECIMENS HAVE BEEN
SENT TO THEM.
WE'VE HAD ONE COMPANY RESPOND
AND GIVE US THE ASSAY RESULTS
ALREADY.
SO THAT'S BEING -- THE DATA HAS
BEEN CLEANED.
WE DISCOVERED BECAUSE OF THE
DIFFERENT TECHNOLOGIES, THERE
WERE A COUPLE OF COMPANIES THAT
COULD NOT USE THESE SPECIMENS.
AND SO WE WENT BACK AND WE
LOOKED AT THE POCO SPECIMENS
THAT WERE STORED AND SOME OTHER
SPECIMENS AND SO WE SENT
ALTERNATIVE SPECIMEN COLLECTIONS
AND -- SO WE LOOKED AT A COUPLE
OF DIFFERENT THINGS WITH THE
EXCEPTION OF ONE COMPANY WHERE
THE SPECIMENS ARE GOING OUT I
THINK ON MONDAY, VIRTUALLY
EVERYBODY HAS THEIR SPECIMENS
RIGHT NOW.
SO RIGHT NOW THEY'RE ANALYZING
THE DATA, THEY'LL SEND IT BACK
TO US, THEY'VE GOT BLINDED
INFORMATION SO THEY'RE JUST
RUNNING ALL THESE ASSAYS, THEY
DON'T KNOW WHICH ARE CONTROLS,
WHICH ARE CANCERS.
SOME OF THE COMPANIES HAVE ASKED
FOR A FEW MORE TIDBITS BUT
THAT'S WHERE WE ARE NOW.
WHEN WE GET ALL THE DATA, WE'LL
RANK THEM, AND WE'LL COME BACK
TO DR. RATHMELL AND ALL THE
DEPUTIES AND SAY HERE'S WHAT
WE'D LIKE TO DO.
OUR NEXT STEPS.
CLEARLY WE'VE GOT TO SELECT THE
ASSAYS.
THAT'S TOP OF THE LIST.
AND WE'RE ON OUR PATH TOWARD
IDENTIFYING OPTIMAL ASSAYS TO
USE.
WE HAVE LAUNCHED THE NETWORK
FORMALLY.
WE HAVE STARTED OUR COORDINATING
AND COMMUNICATIONS CENTER.
IT'S STARTING TO POPULATE THE
FORMAL WORKING GROUP WHERE
PRESENTING THE WORK THAT NCI'S
WORK GROUPS HAVE DONE OVER THE
LAST FEW YEARS, WE'VE HAD AN
ETHICS AND EQUITY GROUP THAT RAN
PARTICIPANT AND PRIMARY CARE
FOCUS GROUPS.
WE HAVE A STATISTICAL DESIGN
GROUP THAT'S LOOKED AT MODELING
DIFFERENT KINDS OF THINGS FOR
OUR STUDY DESIGN ASSUMPTIONS.
WE'VE HAD A GROUP LOOKING AT
WHAT WE HAVE TO DO FOR THE
DIAGNOSTIC PATHWAY, AND THEN WE
ALSO HAVE PEOPLE WORKING AND
THINKING THROUGH RECRUITMENT AND
RETENTION.
SO WE'RE PLANNING AN IN-PERSON
MEETING IN MAY.
WE'RE HOPING TO GET ALL THE
PIECES OF THE PROTOCOL WRITTEN
AND SUBMIT THE PROTOCOL TO THE
CENTRAL IRB BY SUMMER OR IN THE
SUMMER.
AND THEN LAUNCH THE VANGUARD
BEFORE THE END OF THIS YEAR.
AND AS WE SAID EARLIER, CANCER
IS NOT ONE DISEASE.
THERE ARE MULTIPLE DIFFERENT
TECHNOLOGIES THAT ARE BEING
DEVELOPED THAT CAN DETECT
CANCER.
SO WHY SHOULDN'T WE THINK ABOUT
USING MULTIPLE DIFFERENT
TECHNOLOGIES?
FOR AN OVERALL SCREENING O
APPROACH.
AND THE GOAL OF THE CSRN IS TO
UNDERSTAND HOW BEST TO USE THESE
AND OTHER TECHNOLOGIES TO SCREEN
FOR MULTIPLE DIFFERENT CANCER
TYPES AND ULTIMATELY SAVE LIVES
FROM CANCER.
I'M HAPPY TO ANSWER ANY
QUESTIONS YOU HAVE.
AND I'M HAPPY TO LISTEN TO ANY
COMMENTS YOU HAVE AS WELL.
>> THANK YOU SO MUCH,
DR. MINASIAN, FOR WALKING US
THROUGH THIS VERY COMPLEX STUDY
THAT'S COME UP AND ALL THE HARD
WORK THAT'S GONE INTO SETTING
THINGS UP.
WHEN WE FIRST HEARD FROM DR
DR. CASSELL IN JUNE OF 2022,
ABOUT, YOU KNOW, HOW MANY MCDs
WERE OUT THERE AS WELL AS
THERE'S JUST SO MANY MOVING
PIECES AND IT'S JUST AMAZING TO
SEE THE HARD WORK THAT'S GONE
INTO PUTTING IT ALL TOGETHER.
THE ONE WORD I DIDN'T SEE, THE
ASYMPTOMATIC THAT WAS THROWN
AROUND SLOWLY, AND IF IT REALLY
AN INTERESTING -- YOU KNOW, WE
KNOW THAT EARLY DETECTION IS
DIFFERENT FROM SCREENING, AND,
YOU KNOW, I THINK I CAN SPEAK
FOR EVERYBODY, YOU KNOW, WE ALL
WANT EASY WAYS TO FIGHT CANCER
AND SAVE THE NEXT GENERATION.
WE WANT OUR FAMILY MEMBERS NOT
TO SUFFER OR THE PEOPLE WE LOVE.
AND THIS IS ESPECIALLY A VERY
IMPORTANT AREA TO US, AND THE
COMPLEXITY OF MOVING FROM SINGLE
CANCER TESTS TO THE MULTI-CANCER
DETECTION TOOLS, SOMETHING --
THE ALGORITHMS ARE SOMETIMES IN
BLACK BOXES OR, YOU KNOW,
PROPRIETARY SO YOU KNOW, NOTHING
IS OUT THERE.
I GUESS MY QUESTION IS, AGAIN,
I'M PART OF -- OVARIAN CANCER IS
MY CANCER, SO WE FOLLOW THE
TALKS FROM BROAD REALIZING IT
CAN NEVER HAPPEN HERE BECAUSE
YOU -- BUT WE WERE SO HOPEFUL.
AND EVEN WITH THE STATE SHIFT,
THERE WAS NOT A DECREASE IN
MORTALITY, AND IT WAS LIKE
GETTING PUNCHED IN THE STOMACH.
AND, YOU KNOW, THE 10-PLUS YEARS
WAS A LONG TIME TO WAIT AND
WATCH FOR THESE RESULTS.
WE'RE SEEING ABOUT 8,000 PER ARM
TO GET ACCRUED.
WHAT TYPE OF TIMELINE, ONCE THEY
GET STARTED, ARE WE EXPECTING
TO -- YOU KNOW, WHAT'S THE BEST
CASE SCENARIO TO ANTICIPATE SOME
RESULTS?
>> SO THE FIRST OBJECTIVE FOR
THE VANGUARD STUDY IS THE
FEASIBILITY OF RANDOMIZATION.
IF WE LAUNCH THIS AND TWO YEARS
LATER 15 MONTHS LATER, WE FULLY
ACCRUED.
I WOULD SAY THAT'S A CAUSE FOR A
GREAT SUCCESS IN THAT REGARD.
SO I THINK IT GOING TO COME IN
SMALL PIECES BECAUSE THERE ARE
DIFFERENT PIECES TO THIS.
REMEMBER THAT THIS IS A PILOT.
SO WE'RE NOT LOOKING AT
MORTALITY, AND THIS NETWORK IS
ONLY FUNDED FOR FOUR YEARS.
WELL, IT WAS INTENTIONAL BECAUSE
IF THIS IS AS SUCCESSFUL AS WE
HOPE IT IS, WE MAY WANT TO
MODIFY THE PARAMETERS AROUND THE
NETWORK ITSELF WHEN WE COME
FORWARD THE NEXT TIME.
SO IT IS -- SO THERE ARE A
COUPLE DIFFERENT THINGS.
IT'S A PILOT OF THE NETWORK,
IT'S A PILOT OF THIS TRIAL.
AND IN THE THREE YEARS WE'VE
BEEN WORKING ON THIS, WE HAVE
LEARNED SO MUCH THAT I WOULD
IMAGINE IN THE NEXT THREE YEARS,
WE'LL LEARN EVEN MORE SO THAT
WE'LL BE EVEN -- WE'LL HAVE MORE
INFORMATION THAT CAN GO INTO
BUILDING A VERY ROBUST CANCER
SCREENING NETWORK.
>> I JUST ALSO WANTED TO SPEAK
TO THE NETWORK ITSELF AND HOW
THE RURAL SITES ARE GOING TO BE
BROUGHT IN, I THINK ONE OF THE
THINGS WE'RE HEARING TO PROMOTE
MCDs IS IT WILL HELP OVERCOME
INEQUITIES IN CARE BECAUSE IT'S
JUST A BLOOD TEST, BUT I REALLY
LIKE THAT YOU ARE ALSO LOOKING
AT ACCESS TO THE -- YOU KNOW,
ONCE SOMETHING MIGHT BE
INTERCEPTED, THE FOLLOW-UP
MODALITIES THAT NEED TO HAPPEN,
SO I THINK THAT IS SUCH AN
IMPORTANT PART OF THE NETWORK,
SO THANK YOU FOR YOUR WORK.
>> WELL, WE'RE VERY CONCERNED
ABOUT THAT BECAUSE, YOU KNOW, IF
SOMEBODY IN A RURAL PART OF THE
STATE HAS A POSITIVE BLOOD TEST,
YOU KNOW, WHAT HAPPENS NEXT?
DO THEY WAIT THREE MONTHS?
DO THEY HAVE TO TRAVEL 100, 200,
300 MILES TO THE CANCER CENTER
FOR THEIR MRI?
OR THEIR FOLLOW-UP TESTING?
WILL THAT DISCOURAGE THEM?
WILL THEY NOT HAVE THE RESOURCES
FOR THAT?
THERE ARE A VARIETY OF DIFFERENT
THINGS.
IF SOMEBODY CAN NASHVILLE, TO
TAKE THAT EXAMPLE, HAS TO WAIT
TWO MONTHS TO GET A CT SCAN, HOW
ABOUT RURAL TENNESSEE?
WHAT WILL THAT TAKE?
>> OH, YES.
>> AND SO WE REALLY DO WANT TO
CAPTURE THIS AND UNDERSTAND IT
IN A WAY THAT MAKES SENSE.
SO THAT WE CAN HAVE THE DATA.
ONE OF THE THINGS WE'VE BEEN
ASKING OUR COLLEAGUES
PARTICULARLY IS TO PROVIDE US
WITH SOME OF THE PARAMETERS OF
DATA THEY WOULD LIKE TO SEE IN
THIS STUDY.
>> AND YOU KNOW, JUST AS YOU
WERE TALKING, I'M THINKING, YOU
KNOW, THERE WERE PEOPLE WHO LIVE
NEAR MAJOR CANCER CENTERS WHO
MAY BE UNDERINSURED OR
UNDERSERVED, AND ARE THERE
RECRUITMENT PLANS TO MAKE SURE
THAT WE CAPTURE THOSE TYPES OF
PEOPLE AS WELL?
>> SO THERE ARE A COUPLE
DIFFERENT SCENARIOS.
CERTAINLY IN THE VA AND THE DOD,
WE'RE GOING TO HAVE ONE
SCENARIO.
RIGHT?
KAISER MAY BE A SIMILAR SCENARIO
WHERE THEY SAY THEY'RE GOING TO
ABSORB THE COST, IT NOT A
PROBLEM.
SO THAT COULD BE A SCENARIO
WHERE WE START TO UNDERSTAND IF
IT'S NOT AN ACCESS ISSUE, WHAT
ARE THE OTHER BARRIERS TO THE
FOLLOW-UP?
BECAUSE THERE'S A LOT OF
CONCERN, YOU KNOW, DO I HAVE
CANCER, AM I GOING TO BE ABLE TO
TAKE CARE OF MY FAMILY?
A LOT OF PATIENT ISSUES IN THAT
REGARD.
BUT SO THERE'S SOME PLACES IN
THIS THAT WE'LL BE ABLE TO
EXPLORE THAT.
THERE ARE OTHER PLACES WHERE
WE'LL HAVE TO LOOK VERY
SPECIFICALLY AT SOME OF THE
ACCESS ISSUES.
WE HAVE BUILT IN USUALLY IN OUR
CLINICAL TRIALS NETWORK, WE DO
NOT BUILD ANY PATIENT CARE COSTS
IN.
THAT, WE DON'T.
IN THIS ONE, WE CALLED OUT A
FIXED AMOUNT OF MONEY THAT THE
SITES COULD USE TO REIMBURSE FOR
SPECIFIC KINDS OF TESTS.
UNDERSTANDING THAT, YOU KNOW,
THE EXPECTATION HERE IS THAT 1%
OF THESE PARTICIPANTS WILL
ACTUALLY HAVE A POSITIVE TEST.
AND THE REASON WHY THE VANGUARD
STUDY WAS SET FOR A SAMPLE SIZE
OF 24,000 WAS BECAUSE WITH
24,000, WE'LL GET ABOUT
160 POSITIVE BLOOD TESTS THAT
WILL FOLLOW UP.
SO MOST OF THE PEOPLE WILL NOT
HAVE A POSITIVE BLOOD TEST.
SO WHAT DOES IT MEAN?
WE'RE THINKING WITH A RELATIVELY
SMALL AMOUNT OF MONEY, WE MIGHT
BE ABLE IN THIS PILOT SETTING BE
ABLE TO HELP FACILITATE THE
FOLLOW-UP THROUGH THE TRIAL, BUT
THAT'S NOT GOING TO BE THE
SCENARIO GOING FORWARD IF IT'S
AN ACCEPTABLE -- YOU KNOW, THERE
ARE GOING TO HAVE TO BE OTHER
MEANS TO PAY FOR THE DIAGNOSTIC
WORKUP IF IT'S AN APPROVE OR ANR
AUTHORIZED APROA.
>> HI.
THANK YOU FOR YOUR PRESENTATION.
COMING FROM THE LUNG SPACE WE
CERTAINLY HEARD FROM A LOT OF
COMPANIES ABOUT THIS TECHNOLOGY
AND IT'S SUPER EXCITING.
I WOULD SAY, YOU KNOW, WE'RE NOT
THERE YET, WHICH OBVIOUSLY THIS
WILL BE HELPFUL TO GET US THERE.
AS AN INDIVIDUAL LIKE SIGN ME UP
TODAY, TAKE MY BLOOD, TELL ME
ME -- -- SOMETHING OFF AND MAYBE
HOPEFULLY IT'S NOT ACTIONABLE
ANY TIME IN MY LIFETIME BECAUSE
IT'S NOT GOING TO DO ANYTHING,
BUT MY QUESTION IS ABOUT THE
QUALITY OF LIFE PIECE AND
LOOKING AT THE OVARIAN CANCER
EXAMPLE.
LIKE THE MORTALITY MIGHT NOT
CHANGE, BUT CATCHING SOMETHING
EARLIER CAN HELP PEOPLE MAKE
DIFFERENT DECISIONS AND MAYBE
THEY GET BETTER FROM --
MANAGEMENT OR HIGHER QUALITY --
KEEP THEM ALIVE BUT MIGHT MAKE
THEIR LIFE BETTER FOR THAT
INDIVIDUAL.
AND I KNOW THAT -- WAS BEING
LOOKED AT BUT AS A PATIENT
ADVOCATE I THINK THAT'S REALLY
IMPORTANT.
I JUST WANTED TO PUT IT OUT
THERE THAT IT'S MORE THAN
WHETHER OR NOT YOU DIE, YOU
KNOW.
>> NO QUESTION.
AND WE ARE GOING TO COLLECT
QUALITY OF LIFE AND
PATIENT-REPORTED OUTCOMES,
THAT'S A KEY PART OF THIS.
PATIENT-REPORTED OUTCOMES THAT
ARE NOT EVEN JUST THE STANDARD
TOOLS BUT ASKING SOME OF THESE
EXPLICIT QUESTIONS.
I DON'T KNOW IF YOU REMEMBER IN
THE MACH TRIAL, WHEN THAT WAS
LAUNCHED, THERE WAS A VERY
SPECIFIC PRO SECTION THAT WAS
LIKE A CORRELATIVE STUDY IN
ADDITION TO MACH THAT WAS
LOOKING AT PATIENTS'ER SEPTIONS
OF WHAT IT MEANT TO BE -- IN
PARTICULAR WHAT IT MEANT TO GO
THROUGH THE BIOPSY AND THE
MOLECULAR CHARACTERIZATION ONLY
TO HAVE THEM SAY YOU'RE NOT
ELIGIBLE BECAUSE YOU DON'T HAVE
ANY TUMOR MARKERS, THAT'S IT,
RIGHT?
SO YES, WE ABSOLUTELY ARE GOING
TO LOOK VERY CAREFULLY AT WHAT
KIND OF QUALITY OF LIFE, WHAT
KIND OF PATIENT-REPORTED
OUTCOMES NEED TO BE
INCORPORATED, WE'LL PROBABLY USE
PROBABLY MORE PROMIS MEASURES
THAN WE USED WITH QUALITY OF
LIFE BECAUSE THEY MIGHT BE MORE
SPECIFIC TO AN ASYMPTOMATIC
NON-CANCER POPULATION.
>> THANK YOU FOR YOUR
PRESENTATION -- OH, SORRY, DID I
INTERRUPT?
GO AHEAD.
>> THANKS FOR YOUR PRESENTATION
AND THE WORK.
AS A CANCER SURVIVOR, I'VE BEEN
VERY INTERESTED IN THIS.
IT'S HARD TO GET INFORMATION
ABOUT IT FROM THE PUBLIC POINT
OF VIEW.
I WAS AT THE ANNUAL CONFERENCE
LAST SUMMER.
I TALKED TO GRAIL AND EX-ACT
SISCIENCES, I DIDN'T WANT TO PAY
$950 FOR THIS.
I WENT TO WASHINGTON HOSPITAL
CENTER BACK IN JULY.
NO CANCER SIGNAL DETECTED.
I UNDERSTAND THE CAVEATS, FALSE
AND PLUS AND MINUS.
I WOUT OF THE 85 PARTICIPANTS TY
HAD, THEY HAD ONE POSITIVE AND
IT WAS TO A CANCER SURVIVOR.
I DIDN'T HEAR ANY MORE THAN
THAT, BUT WE KNOW WHAT IT LIKE
TO BE DIAGNOSED.
FOR ME IT WAS STAGE IV.
I GOT MY COLONOSCOPY THE NEXT
MONTH.
>> THANKS, LEE.
WE'RE GOING TO TAKE OUR LAST
QUESTION FROM NICOLE.
>> THANK YOU.
THANK YOU FOR YOUR PRESENTATION.
I THINK IT WAS JUST REALLY
INTERESTING, AND COMING FROM THE
BRAIN TUMOR SPACE, WHERE WE NEED
SOME TYPE OF SCREENING, I KNOW
THIS IS NOT NECESSARILY GOING TO
WORK FOR PRAIN DUE MORE
PATIENTS.
MAYBE CSF, BUT PROBABLY NOT
LIKELY BLOOD BECAUSE OF THE
BLOOD BRAIN BARRIER, BUT I THINK
THERE COULD BE A LOT OF
POSITIVES THAT COULD COME OUT OF
THE EARLY SCREENING.
I GUESS ONE OF THE QUESTIONS
THAT I HAD, AND I DON'T KNOW IF
THIS IS -- I DON'T UNDERSTAND
COMPLETELY THE OVARIAN CANCER
STUDY BUT I'M WONDERING, DID YOU
SEE ANY DIFFERENCE IN MORTALITY
WITH DOING THE SCREENING EVEN IF
IT WAS DETECTED EARLIER?
SO DOES IT -- WAS IT LOOKED AT
IF THERE WERE INTERVENTIONS THAT
COULD HAVE BEEN DONE FOR THOSE
THAT WERE DIAGNOSED EARLIER
BECAUSE IF THERE ISN'T ANY
DIFFERENCE IN HOW THOSE PATIENTS
COULD BE TREATED ULTIMATELY,
THEN I WOULDN'T NECESSARILY
EXPECT THERE WOULD BE A DRAMATIC
CHANGE IN MORTALITY, BUT MAYBE
IF THERE WERE OTHER TREATMENTS
THAT COULD BE USED FOR EARLIER
STAGE CANCER, THEN THAT MAY
ULTIMATELY MAKE A DIFFERENCE FOR
THAT PATIENT.
I DON'T KNOW IF THAT MAKES
SENSE.
>> I THINK I KNOW WHERE YOU'RE
GOING.
AND MAYBE IT'S -- SO WITH
OVARIAN CANCER, THE FIRST LINE
OF TREATMENT IRRESPECTIVE OF
YOUR STAGE IS SURGICAL
RESECTION.
OKAY?
EVEN IF YOU HAVE -- YOU KNOW,
UNLESS YOU HAVE WIDELY
METASTATIC DISEASE, MOST
PARTICIPANTS, IF THEY JUST HAVE
LIVER METS, YOU KNOW, MIGHT HAVE
A DEVELOPING SURGERY, MAYBE
POTENTIALLY, SO THAT -- BECAUSE
WHEN YOU DEBULK THE PERITONEUM
AND YOU DEBULK THE WHOLE
ABDOMINAL CAVITY, YOU ACTUALLY
HAVE BETTER UPTAKE OF THE
CHEMOTHERAPY, PARTICULARLY
PLATINUM, AND YOU GET BETTER
RESPONSES.
THAT'S BEEN SHOWN IN OVARIAN
CANCER FOR A LONG TIME.
IT ONE OF THE FEW CANCERS WHERE
YOU DO ACTUALLY GO IN AND DO
THAT.
IN FACT, FOR A LONG TIME WE DID
SECONDARY DEBULKING SURGERIES
ALSO.
ONE OF THE BIG CHANGES IN
OVARIAN CANCER TREATMENT IS THE
PARK INHIBITORS.
AND THOSE HAVE MADE A HUGE
CHANGE IN HIGH GRADE SEROUS
DISEASE.
THEY'VE OVER THE LAST 10 YEARS
BROUGHT IT EARLIER AND EARLIER
INTO INTERVENTION STUDIES.
THIS STUDY, THE UKC TOX WAS DONE
PRIOR TO THE INITIATION OF ANY
PARK INHIBITOR THERAPY.
SO WHAT WE DON'T KNOW IS WHETHER
OR NOT WE WOULD -- SEEING A
MORTALITY -- IF IN FACT IT WAS
DONE AT A TIME WHEN, IN FACT, WE
HAD PARK INHIBITOR THERAPY.
NOW I SAY THAT ALSO BECAUSE I
HAD A GROUP IN MY DIVISION WHERE
WE DID A DEEP DIVE INTO THE POCO
DATA.
WE ACTUALLY WENT BACK TO IT AND
SAID OKAY, HOW WAS THE PATHOLOGY
CLASSIFIED, CAN WE GO BACK AND
LOOK AT SEPARATING THESE OUT
INTO TYPE 1 AND TYPE 2s, AND
THE PATHOLOGY WAS ALL BASED UPON
THE DIAGNOSTIC CRITERIA IN 19
NIEP 1990s AND THE EARLY 2000s
AND REALLY DID NOT LOOK THE A
SOME OF THESE NEWER THINGS.
SO I HAD AN OBGY THIS
GYNECOLOGIST LOOK AT A ROUGH --
SHE LOOKED AT ALL THE PATHOLOGY
REPORTS, AND WE REANALYZED THE
DATA AND WE SAW A SLIGHT TREND
TOWARDS AN IMPROVEMENT IN
THE HIGH GRADE SEROUS OVARIAN
CANCER PATIENTS ON UKC TOX.
SO IT MAY BE THAT OVER TIME, YOU
COULD SHOW THAT.
THE HOPE AND EXPECTATION IS THAT
AS WE PROGRESS THROUGH THE
NATIONAL CANCER PLAN, WE
ACTUALLY DEVELOP BETTER
TREATMENTS THAT IF WE DID
TESTING EARLY ENOUGH, WE COULD
REALLY MAKE A DIFFERENCE.
SO HERE'S AN OPPORTUNITY THEN TO
MARRY MOVING CANCER SCREENING
FORWARD IN SUBSTANTIAL WAYS EVEN
AS WE MOVE CANCER TREATMENT
FORWARD SO THAT HOPEFULLY
THEY'LL COME TOGETHER BEFORE,
WHAT, 2047.
>> THANK YOU SO MUCH,
DR. MINASIAN.
WE ARE OUT OF TIME, SO WE ARE
GOING TO QUICKLY SHIFT GEARS.
HOLLY, THANK YOU FOR JOINING US
AND WE WILL -- PLEASE TAKE YOUR
TIME.
WE WILL STAY FOR Q & A AND WE
WILL DEVOTE SOME OF OUR LUNCH
HOUR TO MAKING SURE THAT WE GET
A FULL LEGISLATIVE REPORT AS
WELL AS HAVING THE TIME TO ASK A
FEW QUESTIONS, SO THANK YOU FOR
BRINGING -- BEING WITH US TODAY.
>> OUTSTANDING.
THANKS, EVERYONE, FOR HAVING ME.
IT'S ALWAYS GREAT TO JOIN.
WE CAN SKIP AHEAD TO THE NEXT
SLIDE.
I DO HAVE A LOT TO COVER IN A
SHORT AMOUNT OF TIME, AND I'LL
START WITH FY 24 APPROPRIATIONS,
THE CURRENT STATUS, SHIFTS IN
TIME LINES AND WHAT TO WATCH
OVER THE NEXT COUPLE OF WEEKS.
I'LL SPEAK BRIEFLY ABOUT NEXT
STOPS FOR 2025 BECAUSE, BELIEVE
IT OR NOT, THAT PROCESS IS ABOUT
TO KICK OFF AS WELL, AND BEFORE
I WRAP UP, I'LL COVER A BIT
ABOUT CONGRESSIONAL RETIREMENTS
AS WELL AS SOME RECENT BRIEFINGS
AND EVENTS THAT NCI HAS BEEN A
PART.
SO WE ARE STILL HERE IN THE
MIDDLE BUT HOPING TO MOVE
THROUGH THOSE NEXT STEPS RATHER
QUICK LE OVER THE NEXT FEW
WEEKS.
THE HOUSE AND SENATE ARE DEEP
INTO NEGOTIATIONS TO FINALIZE
THE LABOR HHS APPROPRIATIONS
BILL, WHICH INCLUDES NIH AND NCI
AS WELL AS SEVERAL OTHER BILLS,
AND WE'RE VERY HOPEFUL THEY'LL
COME TO AN AGREEMENT OVER THE
NEXT WEEK OR SO AND WE'LL SEE
THEM SEND A FINAL PACKAGE TO THE
PRESIDENT'S DESK BY MARCH 22ND.
THAT DEADLINE, DR. RATHMELL
MENTIONED.
SO HERE ARE ALL THE DEADLINES
THAT HAVE BEEN IN PLAY IN FY 24,
OR AT THE START OF CALENDAR 24.
AFTER SEVERAL CONTINUING
RESOLUTIONS AT THE START OF THE
FISCAL YEAR AND THE FALL, WE ARE
NOW 150 DAYS INTO THE FISCAL
YEAR, ALMOST HALFWAY THROUGH.
SO THESE EARLIER DEADLINES IN
LIGHT PINK IS NOW SHIFTED.
MARCH 1ST AND MARCH 8TH HAVE NOW
SHIFTED TO MARCH 8TH AND
MARCH 22ND AND AGAIN, WE'RE IN
THAT SECOND BATCH.
I'LL TALK MORE ABOUT THIS
APRIL 30TH DARKER STAR IN A
MOMENT.
IT'S ONLY RELEVANT IF CONGRESS
DOESN'T MEET THE MARCH 8TH AND
MARCH 22ND DEADLINES.
SO LAST WEEK AFTER A MEETING
BETWEEN THE PRESIDENT, VICE
PRESIDENT, HOUSE AND SENATE
LEADERSHIP, CONGRESS AGREED TO
ANOTHER SHORT TERM EXTENSION OF
THOSE DEADLINES.
TO PROVIDE MORE TIME TO FINALIZE
THE 12 SPENDING BILLS.
SO WE'RE GETTING CLOSE INVENTORY
WHAT WE HOPE IS THE FINISH LINE.
WANTED TO MENTION SIX BILLS THAT
HAVE BEEN GROUPED TOGETHER FOR
THIS MARCH 8TH PACKAGE THAT NEED
TO BE VOTED ON AND FINALIZED
WERE RELEASED OVER THE PAST
WEEKEND.
THEY'RE A SMALLER BATCH EVEN
THOUGH IT'S 6 AND 6, THEY
REPRESENT ABOUT LESS OF THE
SPENDING, ABOUT 30% OF THE
DISCRETIONARY FUNDING THAT
CONGRESS IS CONSIDERING AND THEY
ARE LESS CONTENTIOUS, SO THE
REMAINING 6 INCLUDING LABOR H
REPRESENT ABOUT 70% OF THE
DISCRETIONARY SPENDING, A LARGER
AND MORE CONTENTIOUS BATCH OF
BILLS, AND WE HOPE THAT THOSE
EXTRA TWO WEEKS WILL BE ENOUGH
TIME.
SO AS DR. RATHMELL MENTIONED,
THE BUDGET CLIMATE OVERALL IS
REALLY TIGHT, AND I'LL RECAP
MORE ABOUT THAT IN A MOMENT, BUT
RIGHT NOW THE COMMITTEES ARE
WRITING BILLS TO A TOP LINE
LEVEL THAT'S THE SAME AS FY 23.
SO REALLY NO ROOM FOR GROWTH
UNLESS IT AT THE EXPENSE OF
ANOTHER AGENCY OR PROGRAM.
AND SO FOR THE FIRST BATCH
RELEASED OVER THE WEEKEND, WE
REALLY SAW A COMBINATION OF FLAT
FUNDING IN SOME LA PLACES, MODET
INCREASES IN OTHER, MODEST CUTS
IN OTHERS, AND IT'S NOT
SURPRISING, THAT'S KIND OF THE
COMBINATION WE'D EXPECT.
SO FOR EXAMPLE, FDA IS HELD
ABOUT FLAT.
EPA RECEIVED ABOUT A 4% CUT TO
ITS BASE AND A LARGER CUT TO
SUPER FUND PROGRAMS.
THE DEPARTMENT OF AGRICULTURE
WOULD RECEIVE ABOUT A 1.7%
INCREASE, BUT THIS REPRESENTS
INCREASES TO SOME PROGRAMS
WITHIN THE AGENCY AND DECREASES
TO OTHERS.
SO TO RECAP ON HOW WE DOT HERE.
I THINK AT PAST BOARD MEETINGS
WE'VE TALKED ABOUT THE FISCAL
RESPONSIBILITY ACT.
I JUST WANTED TO INCLUDE A
REFRESHER AND REMINDER HERE.
IT WAS INCT AD IN ENACTED IN J,
THIS IS THE AGREEMENT THAT
SUSPENDED THE DEBT LIMIT UNTIL
2025 AND IT ALSO SET THESE
BUDGET CAPS FOR FY 24 AND NY25.
SO AGAIN FOR FY 24, FLAT AT FY
23 LEVELS EXCEPT FOR A 3%
INCREASE FOR DEFENSE AS
REQUESTED IN THE PRESIDENT'S
BUDGET, AND FOR FY 25, A 1%
INCREASE.
SO BACK TO THAT APRIL 30TH
DEADLINE I SHOWED YOU EARLIER,
IT ALSO INCLUDES THIS ADDITIONAL
PENALTY TO INCENTIVIZE CONGRESS
TO COMPLETE THE APPROPRIATIONS
PROCESS.
SO IF ANY OF THE 12 SPENDING
BILLS ARE NOT COMPLETED BY APRIE
APPLIED TO DEFENSE AND -- TO
DEFENSE DISCRETIONARY SPENDING
OFTEN REFERRED TO AS A
SEQUESTER, SO THAT OFFICE OF
MANAGEMENT AND BUDGET IMPLEMENTS
A SEQUESTER AND IT WOULD REALLY
BE UP TO OMB AS TO HOW THEY
WOULD APPLY THAT CUT.
THAT CUT.
SOME PROGRAMS ARE EXEMPTED, FOR
EXAMPLE VA HEALTHCARE,
ULTIMATELY THIS INCREASES THE
BURDEN FOR THE REST OF THE
BUDGET, HOWEVER, IT'S NOT CLEAR
HOW DEEP THOSE CUTS WOULD BE TO
ANY ONE AGENCY, SINCE OMB WOULD
HAVE DISCRETION, IT DOESN'T HAVE
TO BE AN ACROSS THE BOARD 1%
CUT.
SO WE'RE HOPEFUL, THOUGH, THAT
CONGRESS WILL FINALIZE THE
CURRENT SPENDING NEGOTIATIONS
AND WILL PASS THIS FIRST BATCH
BY THE END OF THE WEEK AND WILL
PASS THE BATCH THAT INCLUDES
LABOR HHS BY MARCH 22ND.
SO I'VE INCLUDED THIS SLIDE
BEFORE AND WANTED TO INCLUDE IT
HERE AGAIN FOR REFERENCE.
SO THAT YOU HAVE A SENSE AND A
REMINDER OF ALL-OF-US OF THE ALS
THAT HAVE BEEN MADE TO DATE.
THE SO THE PRESIDENT PROPOSED A
NOTABLE INCREASE FOR NCI FOR FY
2024.
IT INCLUDED SUSTAINING FUNDING
FOR THE CANCER MOONSHOT.
FY 23 WAS THE LAST YEAR OF FUNDS
AUTHORIZED FOR THE FIRST PHASE
OF THE MOONSHOT UNDER 21ST
CENTURY CURES SO THAT'S THAT
216 MILLION THAT YOU SIGH, AND
ALSO PROPOSED AN ADDITIONAL
$500 MILLION INCREASE.
SO IN THE HOUSE AT THE TIME THEY
WERE WRITING BILLS TO AN EVEN
LOWER SPENDING LEVEL BACK TO FY
22 LEVEL, SO THAT PROPOSAL HELD
NCI'S BASE FLAT BUT DID NOT
ADDRESS THE 216 MILLION.
THE SENATE PROPOSAL DOES ADDRESS
THE 216 MILLION AND APPROPRIATES
AN ADDITIONAL $60 MILLION FOR
NCI.
SO WE'LL BE WATCHING FOR THE
RELEASE OF THAT FINAL BILL
SOMETIME AHEAD OF THE MARCH 22ND
DEADLINE TO SEE WHERE ALL THESE
NUMBERS LAND FOR NIH AND NCI IN
FY 24.
SO THIS GRAPHIC REALLY JUST
ILLUSTRATES THE OVERLAPPING
NATURE OF THE APPROPRIATIONS
PROCESS.
SO HERE WE ARE IN MARCH, STILL
TRYING TO FINALIZE FY 24 FUNDING
AND ALSO EXPECTING TO SEE THE
PRESIDENT'S BUDGET RELEASED NEXT
WEEK.
OMB INDICATED THEY EXPECT TO
RELEASE IT ON MONDAY, MARCH 11TH
AND THAT REALLY KICKS OFF THE FY
2025 APPROPRIATIONS PROCESS, AND
THEN WE'LL MOVE THROUGH THOSE
NEXT STEPS OF OMB AND CABINET
LEVEL HEARINGS IN THE HOUSE AND
SENATE AND FOLLOWED BY THE
AGENCY OPERATING DIVISIONS
INCLUDING NIH AND THEN AGAIN
LATER IN THE SUMMER AND INTO THE
FALL FINAL NEGOTIATIONS MOVING
FORWARD TO FINALIZE FY 25.
SO A LOT OF GROUND TO COVER
BEFORE THEN, BUT JUST WANTED TO
SIGNAL THAT WE ARE LOOKING AHEAD
NEXT WEEK TO THE KICKOFF OF THE
FY 25 APPROPRIATIONS PROCESS.
SHIFTING GEARS AWAY FROM
APPROPRIATIONS.
I WANTED TO MENTION OTHER RECENT
CONGRESSIONAL ACTIVITY INCLUDING
THE ANNOUNCEMENT LAST WEEK FROM
SENATE MINORITY LEADER MITCH
MCCONNELL OF KENTUCKY, HE'LL BE
STEPPING DOWN AS LEADER IN
NOVEMBER.
HE'LL REMAIN IN THE SENATE, HE'S
NOT UP FOR RE-ELECTION UNTIL
2026.
SO THERE'S A NINE-MONTH RACE TO
SUCCEED HIM WITH SEVERAL
CANDIDATES FORMALLY AND
INFORMALLY IN THE RUNNING.
SENATOR JOHN CORNYN OF TEXT IS
TEXAS INTHE FAR RIGHT IN THAT PN
THE ORANGE TIE HAS ANNOUNCED
HE'S RUNNING.
SENATOR JOHN THUNE OF SOUTH
DAKOTA IN THE CENTER BEHIND
SENATOR MCCONNELL IS EXPECTED TO
BE A CONTENDER.
AND THEN JUST THIS MORNING ON
THE LEFT, SENATOR JOHN BARRASSO
OF WYOMING ANNOUNCED HE WILL NOT
RUN FOR THE LEADER POSITION, AND
RATHER HE'LL SEEK THE ASSISTANT
REPUBLICAN LEADER POSITION OR
WHIP POSITION, THE SECOND
HIGHEST RANKING GOP SENATOR.
HE'S CURRENTLY NUMBER THREE.
THUNE CURRENTLY SERVES AS
MINORITY WHIP, IT'S A TERM
LIMITED POSITION THAT SENATOR
CORNYN HELD IN THE PASS AND WE
EXPECT OTHERS WILL JUMP INTO THE
RACE.
THERE'S PLENTY OF TIME LEFT.
SO REGARDLESS OF THE OUTCOMES OF
THE NEXT ELECTION, THERE WILL
ALSO BE A LOT OF TURNOVER IN
CONGRESS DUE TO RETIREMENTS.
SEVERAL MEMBERS ARE RETIRING OR
SEEKING OTHER OFFICES AND I'M
HIGHLIGHTING A HANDFUL HERE WITH
A SPECIFIC RELEVANCE TO NCI.
SO ON THE TOP LEFT,
REPRESENTATIVE CATHY MCMORRIS
RODGERS, CHAIR OF THE HOUSE
ENERGY AND COMMERCE COMMITTEE.
NEXT TO HER, REPRESENTATIVE ANNA
ESHOO, RANKING MEMBER OF THE
HEALTH SUBCOMMITTEE.
ON THE LOWER LEFT, SENATOR
MANCHIN, KAY GRANGER OF TEXAS
WHO CHAIRS THE HOUSE
APPROPRIATIONS COMMITTEE IS
RETIRING AND THAT OPENS UP A
RACE FOR HER LEADERSHIP POSITION
OF THE FULL COMMITTEE IN THE
HOUSE.
AND THEN REPRESENTATIVES DERRICK
KILMER OF WASHINGTON AND BRIAN
HIGGINS OF NEW YORK WHO HAS
ALREADY RETIRED AND CO-CHAIRS OF
THE HOUSE CANCER CAUCUS.
SO WE'LL SEE A LOT OF NEW FACES
IN THE NEXT SESSION.
I WANTED TO HIGHLIGHT TWO RECENT
CONGRESSIONAL BRIEFINGS.
ON THE LEFT, DR. TAYLOR SUNDBY
PRESENTED AT A BRIEFING ON
NEUROFIBROMATOSIS RESEARCH
THAT'S HELD EACH YEAR SPONSORED
BY THE LITTLE S TUMOR
FOUNDATION.
ON THE RIGHT, DR. VIK
SAHASRABUDDHE AND REPRESENTATIVE
DEBBIE DINGELL.
HE LEADS THE LAST MILE
INITIATIVE FOCUSED ON CERVICAL
CANCER PREVENTION AND HE'S
PICTURED HERE WITH
REPRESENTATIVE DEBBIE DINGELL OF
MICHIGAN, CO-CHAIR OF THE CANCER
PREVENTION CAUCUS IN THE HOUSE.
AND WANTED TO FLAG I THINK
PROBABLY MENTIONED BEFORE IF ANY
OF YOUR ORGANIZATIONS ARE
HOSTING BRIEFINGS OR ROUNDTABLES
ON THE HILL AND ARE INTERESTED
IN HAVING SOMEONE FROM NCI, ONE
OF OUR RESEARCHERS OR PROGRAM
DIRECTORS COME AND SPEAK ABOUT
RESEARCH IN THAT AREA, PLEASE
LET ME KNOW.
WE'RE HAPPY TO FACILITATE THEIR
PARTICIPATION.
IT'S A GREAT OPPORTUNITY FOR
THEM TO PARTICIPATE IN THESE
EDUCATIONAL BRIEFINGS AND TO
HIGHLIGHT THE IMPORTANT CANCER
RESEARCH NCI SUPPORTING STATES
AND DISTRICTS ACROSS THE
COUNTRY.
I KNOW SEVERAL OF YOUR
ORGANIZATIONS ARE MEMBERS OF THE
COALITION ONE VOICE AGAINST
CANCER.
DR. RATHMELL ATTENDED THE ANNUAL
MEETING IN JANUARY TO INTRODUCE
HERSELF AND TO SHARE AN UPDATE
WITH OVAC MEMBERS.
SHE ALSO ATTENDED A
CONGRESSIONAL RECEPTION HONORING
DR. MONICA BERTAGNOLLI AND
WELCOMING HER AS NIH DIRECTOR.
DR. BERTAGNOLLI IS PICTURED WITH
DR. SHELLEY MOORE CAPITO OF WEST
VIRGINIA AND LISA LAKAS OF THE
AMERICAN CANCER SOCIETY.
THAT RECEPTION WAS GREAT
OPPORTUNITY FOR DR. RATHMELL TO
MEET REPRESENTATIVE ROSA DELORO
AND UR EV LEFT HERE RANKING
MEMBER OF THE HOUSE
APPROPRIATIONS COMMITTEE AND OUR
LABOR HHS SUBCOMMITTEE.
EARLIER THAT DAY, HAD A CHANCE
TO MEET WITH SENATOR JOHN
BOZEMAN OF ARKANSAS AND SENATOR
JACK REED OF RHODE ISLAND AND
EARLIER THAT MONTH SHE ALSO MET
WITH SENATOR SHELLEY MOORE OF
WEST VIRGINIA RANKING MEMBER OF
THE SENATE LABOR COMMITTEE AS
WELL AS SENATOR JERRY MORAN OF
KANSAS.
SO EXCITED TO HAVE HER UP ON THE
HILL AND MEETING SOME OF OUR
MEMBERS OF OUR SUBCOMMITTEES AND
HOPING TO DO MORE OF THAT SOON.
HAPPY TO TAKE QUESTIONS.
I HOPE I COVERED THAT WITH
ENOUGH TIME TO SPARE AND PLEASE
REACH OUT ANY TIME IF WE DON'T
HAVE A CHANCE TO COVER
EVERYTHING TODAY.
>> THANK YOU SO MUCH, HOLLY, FOR
YOUR SPEED AND DELIVERY OF YOUR
PRESENTATION, A VERY COMPLEX
POLITICAL CLIMATE AND ALL THE
GYMNASTICS THAT ARE HAPPENING TO
HELP KEEP OUR COUNTRY AND NCI
RUNNING.
YOU KNOW, LOOKING AT FY 25 WITH
B. TO OPEN, IS THERE ANY CHANCE
THAT CONGRESS WILL ACT AND THAT
WE'LL HAVE A BUDGET ANY TIME
SOON FOR '24 OR '25, OR ARE WE
LIVING IN THE LIMBO OF CRs FOR
A WHILE?
>> I MEAN, I'M VERY HOPEFUL THAT
THEY WILL BE MOVING QUICKLY OVER
THE NEXT COUPLE OF WEEKS.
WE'RE SEEING THIS WEEK THEY ARE
MOVING FORWARD WITH THAT FIRST
BATCH AS QUICKLY AS POSSIBLE.
THEY RELEASED IT OVER THE
WEEKEND TO ALLOW THE 72 HOURS AT
LEAST OF TIME FOR FOLKS TO
REVIEW THE BILL BEFORE VOTING ON
IT.
AND SO WE'RE HOPING TO SEE, YOU
KNOW, OUR BILL RELEASED THE
WEEKEND BEFORE HOPEFULLY AS
WELL.
SO I AM HOPEFUL THAT IT WILL BE
WRAPPED UP SOON FOR FY 24.
NOTHING IS A GUARANTEE, I'M NOT
MAKING ANY BIG PREDICTIONS HERE
BUT I'M ENCOURAGED TO SEE THINGS
MOVING OVER THESE NEXT COUPLE OF
WEEKS.
FOR FY 25, I THINK WE'LL HAVE TO
WAIT AND SEE.
HONESTLY WE TYPICALLY DO NOT
RECEIVE OUR APPROPRIATION ON
TIME.
I THINK I'VE BEEN AT NCI ALMOST
15 YEARS NOW AND THERE HAS BEEN
ONE YEAR WHERE WE HAD OUR
APPROPRIATION BY THE END OF
SEPTEMBER.
AND SO YOU KNOW, CRs ARE
FREQUENT.
I WOULDN'T BE SURPRISED TO SEE
THEM AGAIN IN FY 25.
HOPEFULLY NOT TAKE US HALFWAY
INTO THE FISCAL YEAR, YOU KNOW,
THERE ARE PARAMETERS SET FOR
'25, THIS 1% ABOVE FY 24 LEVELS
AND HOPEFULLY CONGRESS WILL BE
ABLE TO WORK WITHIN THOSE
PARAMETERS AND WRAP THINGS UP A
LITTLE CLOSER TO THE START OF
THE FISCAL YEAR BUT WE'LL HAVE
TO WAIT AND SEE.
>> DOES ANYONE ELSE HAVE WILL
ANY QUESTIONS?
I THINK WE'RE ALL JUST IN AWE OF
THE COMPLEX NATURE OF GETTING A
BUDGET PASSED, AND WE THANK YOU
FOR YOUR TIME AND FOR PRESENTING
TO US.
AMY, DO WE HAVE ANYTHING THAT WE
NEED TO DO BEFORE WE BREAK FOR
LUNCH?
SO WE'RE GOING TO BREAK FOR
LUNCH AND WE'LL BE BACK ON
SCHEDULE AT 1:00.
THANK YOU.
>> THANK YOU, EVERYONE, FOR
COMING BACK.
I AM NOW GOING TO CALL THE
MEETING BACK TO ORDER.
OUR FIRST UPDATE AFTER LUNCH
HERE IS WE ARE SO PLEASED TO
HAVE DR. ELIZABETH JAFFEE JOIN
US FROM THE PRESIDENT'S CANCER
PANEL.
SHE'S GOING TO TALK TO US A
LITTLE BIT ABOUT THE NATIONAL
CANCER PLAN.
IF YOU'RE NOT AWARE, THAT
DR. JAFFEE IS AN INTERNATIONALLY
RECOGNIZED IMMUNOLOGY -- DEPUTY
TOO DIRECTOR OF THE CANCER
CENTER AT JOHNS HOPKINS AND ALSO
A -- THE AMERICAN ASSOCIATION
FOR CANCER RESEARCH AND HAS
SERVED ON SEVERAL COMMITTEES
INCLUDING CO-CHAIR OF THE CANCER
MOONSHOT PANEL AND PAST CHAIR OF
THE NATIONAL CANCER ADVISORY
BOARD.
THANK YOU SO MUCH FOR COMING TO
OUR MEETING, DR. JAFFEE.
>> THANK YOU VERY MUCH FOR
INVITING ME TO THIS MEETING TO
DISCUSS HOW WE'VE BEEN
MONITORING THE NATIONAL CANCER
PLAN.
I JUST WANTED TO POINT OUT
BEFORE I GET STARTED THAT THIS
IS A LIVING DOCUMENT THAT WILL
CONTINUE TO GROW WITH THE NEEDS
OF ALL CANCER PATIENTS, BOTH
CURRENT AND FUTURE.
I ALSO WANT TO WELCOME ANY INPUT
FROM ALL STAKEHOLDERS BECAUSE WE
DO PROVIDE A WAY TO PROVIDE THAT
INPUT AT ALL TIMES.
IN ADDITION TO HOLDING ANNUAL
PUBLIC MEETINGS, WE SOLICIT
SUBMISSIONS VIA EMAIL AND SOCIAL
MEDIA TO LEARN ABOUT PROGRAMS,
ACTIVITIES AND ACHIEVEMENTS THAT
ALIGN WITH THE PLAN'S GOALS.
SO I'M GOING TO PRESENT TO YOU
THE EIGHT GOALS OF THE PLAN, AND
HOW WE'VE INITIATED OUR MONIT
MONITORING, AND I ALSO WANT TO
POINT OUT THAT THESE GOALS ARE
MEANT TO BE BROAD GOALS SO THAT
THEY'RE ALL INCLUSIVE.
WE REALIZE THAT ALL OF US ONLY
CONTRIBUTE TO PARTS OF THEM AND
AGAIN THIS IS MEANT TO BE BROAD
AND ALSO TO BE VERY
COLLABORATIVE.
SO WITH THAT STARTING POINT, SO
I WANTED TO JUST GIVE YOU A
LITTLE BIT OF AN OVERVIEW OF WHO
WE ARE AS THE PRESIDENT'S CANCER
ADVISORY PANEL.
WE'RE A THREE-MEMBER PANEL THAT
WAS ESTABLISHED BY THE NATIONAL
CANCER ACT OF 1971.
OUR MISSION IS TO MONITOR THE
DEVELOPMENT AND EXECUTION OF ALL
ACTIVITY OF THE NATIONAL CANCER
PROGRAM, SO NOT JUST THE NCI.
AND WE ARE EXPECTED TO REPORT
DIRECTLY TO THE PRESIDENT.
WE'RE ALSO SUPPOSED TO IDENTIFY
HIGH PRIORITY TOPICS FOR WHICH
THE PRESIDENT AND THE GOVERNMENT
CAN ACT ON BASED ON OUR
RECOMMENDATIONS.
I DO CHAIR THIS.
I HAVE TWO WONDERFUL COLLEAGUES
WHO WORK WITH ME, DR. MITCH
BERGER, HE'S AT THE UNIVERSITY
OF CALIFORNIA SAN FRANCISCO, AND
HE IS AN EXPERT IN BRAIN CANCER
SURGERY.
AND DR. CAROL BROWN AT THE
MEMORIAL SLOAN KETTERING CANCER
CENTER, AND SHE'S AN EXPERT IN
GYNECOLOGICAL ONCOLOGY AND ALSO
IN HEALTH DISPARITIES.
SO WE ORIGINALLY WORKED WITH DRT
THAT TIME WAS THE DIRECTOR OF
THE NATIONAL CANCER INSTITUTE,
AND SHE REALLY DEVELOPED THE NEW
NATIONAL CANCER PLAN TO ALIGN
WITH THE 50TH ANNIVERSARY OF THE
NATIONAL CANCER ACT.
WE TOOK PART IN HELPING HER.
SHE ALSO WORKED WITH HHS AND
WITH THE WHITE HOUSE.
SO THIS WAS ORIGINALLY RELEASED
IN APRIL OF 2023.
AND IT WAS BASICALLY IN
ALIGNMENT OF THE LONG TERM
INITIATIVE TO MEET THE GOALS OF
PRESIDENT BIDEN'S CANCER
MOONSHOT.
IT'S DESIGNED TO FACILITATE
COLLABORATION, COMMUNICATION,
OUTREACH AND PARTNERSHIPS, NOT
ONLY AGAIN IN CANCER RESEARCH
BUT IN ALL OF CANCER CARE, TO
REALLY BRING IN ALL OF THE
CANCER COMMUNITY, AND TO BE ABLE
TO REACH ACROSS ALL SECTORS OF
SOCIETY SO THAT WE CAN MAKE
FASTER PROGRESS IN ENDING CANCER
AS WE KNOW IT.
AND AGAIN, YOU CAN READ ABOUT
THIS AS WELL AS OUR ACTIVITIES
ON THE NATIONAL CANCER
PLAN.CANCER.GOV.
SO THESE ARE THE EIGHT GOALS,
AND NOT ONLY THE GOALS BUT WHAT
WE BELIEVE SUCCESS SHOULD LOOK
LIKE.
AND THEY INCLUDE PREVENTING
CANCER AND WE WANT THIS TO MEAN
THAT WE PREVENT CANCER IN ALL
PEOPLE OF OUR SOCIETY, AND WE
WANT EVERYONE TO BE ABLE TO
ADOPT PROVEN STRATEGIES THAT
REDUCE THE RISK OF CANCER.
WE NEED TO DETECT CANCER EARLY,
AGAIN, WE WANT TO DETECT CANCER
IN EVERYONE AT THE EARLIEST
STAGES TO ENABLE THE MOST
EFFECTIVE TREATMENTS.
WE WANT TO DEVELOP EFFECTIVE
TREATMENT OPTIONS.
WE REALIZE THAT WE'RE NOT GOING
TO GET RID OF ALL CANCER BY
DETECTING EARLY OR PREVENTING.
WE NEED GOOD EFFECTIVE
TREATMENTS.
WE NEED TO CONTINUE TO BE
VIGILANT TO DEVELOP THESE
TREATMENTS.
IMPORTANT TO ALL OF THE GOALS IS
TO ELIMINATE INEQUITIES.
AND THIS MEANS DISPARITIES IN
CANCER RISK FACTORS, INCIDENTS,
TREATMENTS, SIDE EFFECTS,
MORTALITY, AND ALSO WE WANT TO
ELIMINATE ALL OF THIS THROUGH
EQUITABLE ACCESS TO PREVENTION,
SCREENING, TREATMENT AND
SURVIVORSHIP CARE.
WE NEED TO DELIVER OPTIMAL CARE
AND WHAT THIS MEANS IS WE NEED
TO DEVELOP CARE THAT IS
EVIDENCE-BASED AND TO EVERYONE
IT HAS TO BE PATIENT-CENTERED
CARE THAT AGAIN PRIORITIZES
PREVENTION, REDUCES CANCER
MORBIDITY AND MORTALITY, AND
OVERALL WE WANT TO IMPROVE THE
LIVES OF CANCER SURVIVORS.
THOSE PEOPLE WHO ARE LIVING WITH
CANCER.
WE NEED TO ENGAGE EVERYONE.
EVERY PERSON WITH CANCER OR AT
RISK FOR CANCER HAS AN
OPPORTUNITY TO PARTICIPATE IN
RESEARCH OR OTHERWISE CONTRIBUTE
TO THE COLLECTIVE KNOWLEDGE
BASE, AND TO HELP US REMOVE THE
BARRIERS TO THEIR PARTICIPATION.
THIS IS CRITICAL TO MAKING SURE
THAT EVERYONE IS A PART OF
SOLVING THIS PROBLEM.
WE NEED TO MAXIMIZE DATA
UTILITY.
WE'RE AT A TIME WHERE WE HAVE SO
MUCH DATA, WE'RE LEARNING SO
MUCH IN THE HEALTHCARE SYSTEM.
WE NEED TO SECURE SHARING OF
PRIVACY PROTECTED HEALTH DATA.
WE NEED TO HAVE STANDARD
PRACTICES WHERE WE SHARE THROUGH
RESEARCH AND ALSO THROUGH
PATIENT CARE.
WE NEED TO BE ABLE TO SHARE SO
WE CAN MAKE ADVANCES MORE
QUICKLY.
THIS IS CRITICAL TO WHAT WE DO,
AND HOW WE MOVE FORWARD.
AND AGAIN WE NEED TO OPTIMIZE
THE WORKFORCE, AND THE PANDEMIC
HAS FURTHER REDUCED OUR ABILITY
TO RECRUIT PEOPLE INTO THE
WORKFORCE.
WE NEED PEOPLE IN THE WORKFORCE
IN ALL SECTORS OF HEALTHCARE.
THE CANCER CARE AND RESEARCH
WORKFORCE NEEDS TO BE DIVERSE,
IT NEEDS TO REFLECT THE
COMMUNITIES WE SERVE AND IT NEED
TO MEET THE NEEDS OF ALL PEOPLE
WITH CANCER AND THOSE AT RISK
FOR CANCER.
THIS IS THE ONLY WAY THAT WE
WILL ENSURE PEOPLE WILL LIVE
LONGER AND HEALTHIER LIVES.
SO OUR FIRST STEP WAS TO HAVE A
STAKEHOLDER MEETING AND THESE
ARE THE GROUPS THAT WE INVITED
TO THIS FIRST MEETING.
THIS IS BASED ON KNOWING THAT
THESE ARE NATIONAL GROUPS THAT
WORK WITH MANY DIFFERENT PEOPLE
IN DIFFERENT COMMUNITIES, AND
WHO WE KNOW ARE CONTRIBUTING TO
THE NATIONAL CANCER PLAN.
SO OUR INITIAL ASSESSMENT WAS
AGAIN TO ENGAGE THE COMMUNITY.
WE WANTED TO REVIEW ACTIVITIES
ADDRESSING THE GOALS OUTLINED IN
THE NATIONAL CANCER PLAN.
SO WHAT IS CURRENTLY ONGOING.
WE WANTED TO IDENTIFY THE
CHALLENGES AND ALSO THE
OPPORTUNITIES SO WE CAN
ACCELERATE PROGRESS AGAINST
CANCER, AND IMPORTANTLY, WE
WANTED TO FOSTER COLLABORATIONS
AMONG ALL STAKEHOLDERS SO THAT
WE COULD ACHIEVE COMMON GOALS
AND ACHIEVE THEM MORE QUICKLY.
SO THE FIRST STEP WAS TO LEARN
ABOUT PROGRAMS, ACTIVITIES AND
ACHIEVEMENTS THAT WERE RELEVANT
TO THE NATIONAL CANCER PLAN, AND
THIS WAS DONE THROUGH OUR FIRST
STAKEHOLDER MEETING.
YOU CAN SEE ON THE RIGHT
PICTURES OF SOME OF THE PEOPLE
WHO PARTICIPATED, AND THIS WAS
HELD ON SEPTEMBER 7TH, 2023.
AND WE ALSO HAD REQUESTED THAT
PEOPLE SUBMIT ANY UPDATES
CONTINUOUSLY VIA EMAIL AND
SOCIAL MEDIA.
WE WANT TO HEAR FROM EVERYONE.
WE WANT TO HEAR WHAT THE
OPPORTUNITIES ARE, WHAT THE
CHALLENGES ARE, AND WHAT
EVERYONE IS DOING TO ACHIEVE
THESE GOALS SO WE CAN LEARN FROM
EACH OTHER AND WORK TOGETHER.
SO OUR REPORT WAS PRESENTED TO
THE PRESIDENT ACTUALLY ON THE
DATE THAT WAS ON THE FIRST PAGE,
I MEANT TO MENTION THAT WAS THE
DATE WE PRESENTED TO THE
PRESIDENT'S TEAM.
, OUR FINDINGS, AND WE
IDENTIFIED THE FIVE PRIORITIES
THAT WE WERE HOPING THAT THE
PRESIDENT AND CONGRESS WOULD
WORK ON TO ADDRESS SOME CRITICAL
NEEDS THAT WE NEED NOW.
ONE INCLUDES INCREASING
INVESTMENT IN BIOMEDICAL
RESEARCH.
IT MAY SEEM LIKE THERE'S A LOT
OF MONEY GOING TO THE NCI AND
THE NIH.
IT'S NOT ENOUGH.
IT BARELY COVERS THE COST OF
LIVING INCREASES.
THIS HAS BEEN TRUE FOR THE PAST
COUPLE OF DECADES.
YES THE MOONSHOT MONEY HELPED
BUT THE MOONSHOT MONEY IS GOING
AWAY.
WE NEED ANOTHER INVESTMENT AND
IT'S NOT A GOOD TIME RIGHT NOW
IN CONGRESS TO REALLY GET THAT
INVESTMENT.
SO WEAR VERY, VERY CONCERNED AND
WE WANT THAT TO BE ON THE RADAR.
WE ALSO NEED TO ENSURE ACCESS TO
HIGH QUALITY INSURANCE COVERAGE
FOR ALL AND AS I'LL MENTION TO
YOU THERE ARE STATES WHERE
MEDICAID IS NOT REALLY HELPING
THE PATIENTS WHO NEED IT AND
I'LL TALK A LITTLE BIT MORE
ABOUT THAT.
WE NEED TO BUILD A SUSTAINABLE,
ROBUST AND DIVERSE WORKFORCE.
THIS IS CRITICAL.
THIS IS ABSOLUTELY CRITICAL.
THIS WORKFORCE NEEDS TO REFLECT
THE COMMUNITY.
IT NEEDS TO BE ABLE TO ENGAGE
THE COMMUNITY TO UNDERSTAND THE
COMMUNITY.
RIGHT NOW WE'RE REALLY IN A BIG
DILEMMA BECAUSE WITH THE
PANDEMIC AS I MENTIONED IN THE
BEGINNING, OUR WORKFORCE IS
SHRINKING, IT'S NOT INCREASING.
WE NEED WAYS IN WHICH TO ENGAGE
MORE PEOPLE INTO OUR WORKFORCE
WITH GOOD-PAYING JOBS, AND ALL
ASPECTS OF THE HEALTHCARE
WORKFORCE.
WE NEED TO PROMOTE DYNAMIC AND
SUSTAINABLE COMMUNITY
ENGAGEMENT.
I MEAN, EVERYONE HAS TO TAKE
PART.
WE CAN'T DO THIS ALONE IN ANY
ONE SECTOR.
THIS IS EVERYBODY NEEDS TO BE A
PART OF THE SOLUTION, EVERYONE
HAS TO BE PROACTIVE, AND
EVERYONE NEEDS TO BE PARTNERED
IN THIS.
AND WE NEED TO PRIORITIZE DATA
SHARING AND INTEGRATION TO EXCEL
RAY RESEARCH.
SO I'LL TAKE EACH ONE THESE AS
WE GO THROUGH THE NEXT SET OF
SLIDES.
SO INVESTING IN BIOMEDICAL
RESEARCH IS CRITICAL.
WE NEED TO INCREASE BOTH PUBLIC
AND PRIVATE INVESTMENT IN
BIOMEDICAL RESEARCH.
THEY PROVIDE COMPLEMENTARY ROLES
TO HELP US TRANSLATE ALL THIS
BIOLOGICAL KNOWLEDGE, AND IN THE
PAST 10 TO 15 YEARS, WE HAVE
LEARNED SO MUCH ABOUT SO MANY OF
THE DIFFERENT CANCER TYPES.
WHAT THIS MEANS IS WE HAVE THE
ABILITY TO TRANSLATE THIS INTO
GOOD TREATMENTS WITH BETTER
OUTCOMES AND GOOD PREVENTION
TOO, BUT IT TAKE MONEY, IT TAKES
MONEY FROM BOTH SECTORS NOT JUST
THE PUBLIC SECTOR, NOT JUST THE
NIH BUT WE ALSO NEED THE PRIVATE
SECTOR TO TAKE PART.
WE NEED PUBLIC INVESTMENT IN
CANCER RESEARCH TO KEEP UP WITH
THE PACE OF OUR PROGRESS AND
UNDERSTANDING.
WE HAVE THE TECHNOLOGIES, WE'RE
IN A TECHNOLOGICAL REVOLUTION.
WE'RE DOING MORE THAN EVER IN
UNDERSTANDING THESE DISEASES.
WE NEED TO KEEP UP WITH THIS AND
WE NEED THE PUBLIC INVESTMENT TO
KEEP UP WITH CANCER RESEARCH.
AND THEN THE PRIVATE SECTOR
CONTINUES TO BENEFIT FROM
GOVERNMENT-FUNDED RESEARCH.
YET MOST OF US DON'T BELIEVE
THEY'RE CONTRIBUTING ENOUGH TO
THESE EARLY DEVELOPMENTS.
YES, THEY HELP TO DEVELOP LATER
STAGE DRUGS, BUT WE NEED PRIVATE
SECTOR TO CONTINUE TO INVEST AND
AT HIGHER LEVELS IN THE EARLIEST
STAGES SO WE CAN BRING THESE
BETTER TREATMENTS TO ALL
PATIENTS WITH CANCER AS WELL AS
TO PEOPLE WHO NEED US TO PREVENT
CANCER.
WE NEED HIGH QUALITY INSURANCE
COVERAGE.
THERE ARE 10 STATES THAT JUST
DON'T DO THIS WELL AT ALL.
MEDICAID COULD ALWAYS BE BETTER
IN ALL OF THE STATES BUT WE NEED
TO EXPAND MEDICAID PROGRAMS
ACROSS 10 STATES THAT ARE REALLY
BEHIND.
WE NEED TO INCREASE EQUITABLE
ACCESS TO CANCER CARE THROUGH
ADEQUATE COVERAGE FOR CANCER
PREVENTION, SCREENING, DIAGNOSIS
RG, TREATMENT AND SURVIVORSHIP.
THERE ARE STILL GAPS IN CANCER
CARE OUTCOMES AMONG THE UNDER
INSURED AND UNINSURED
INDIVIDUALS AND THERE ARE SO
MANY OF THOSE PEOPLE OUT THERE.
WE HAVE TO INCLUDE THEM, WE HAVE
TO MAKE SURE THAT THEY ARE
GETTING ACCESS TO THE BEST CARE.
AND THE LACK OF HEALTH INSURANCE
OR INADEQUATE COVERAGE
UNDERMINES TIMELY ACCESS TO HIGH
QUALITY CANCER CARE.
THIS IS PARTICULARLY IMPORTANT
BECAUSE IF IT'S NOT TIMELY,
PEOPLE WITH BAD CANCERS THAT ARE
MOVING QUICKLY ARE NEVER GOING
TO HAVE ACCESS.
SO NOT ONLY DO WE NEED GOOD
ACCESS, IT HAS TO BE TIMELY.
WE NEED TO BUILD A SUSTAINABLE
ROBUST AND DIVERSE WORKFORCE AND
THIS IS CRITICAL.
THIS REQUIRES THE COLLABORATION
BETWEEN BOTH PUBLIC AND PRIVATE
INVESTMENT TO RECRUIT, TRAIN,
SUPPORT, AND RETAIN A ROBUST AND
DIVERSE WORKFORCE.
WE NEED PUBLIC AND ACADEMIC
SECTORS TO HAVE HELP FROM THE
PRIVATE SECTORS.
THEY'RE LEADING EFFORTS TO TRAIN
AND SUPPORT THE ONCOLOGY
WORKFORCE.
BUT THEY ARE NOT GETTING THE
FUNDING FROM THE PRIVATE SECTOR
THAT ARE BENEFITING FROM THESE
INVESTMENTS.
THE PRIVATE SECTOR REAPS
BENEFITS, PARTICULARLY FROM NIH
AND NCI TRAINING PROGRAMS, AND
THESE PROGRAMS ARE SHRINKING AS
THE BUDGET SHRINKS AT THE NIH
AND THE NCI.
SO WE'RE GOING TO HAVE FEWER AND
FEWER PEOPLE WHO ARE TRAINED IN
CANCER RESEARCH AND CANCER CARE
IF WE DON'T MAKE SURE THAT WE
GET THE PRIVATE SECTOR INVOLVED
IN SHARING, IN TRAINING PEOPLE.
AND CANCER CARE AND RESEARCH IS
UNDERMINED BY NATIONAL AND LOCAL
PROVIDER SHORTAGES AND LACK OF
WORKFORCE DIVERSITY.
THIS IS A PROVEN FACT, WE HAVE
TO CHANGE THIS.
OF AGAAGAIN, CONTINUING ON BUILA
SUSTAINABLE, ROBUST AND DIVERSE
WORKFORCE, WE NEED TO ENACT THE
LAWS TO PERMANENTLY ALLOW
MEDICARE COVERAGE FOR TELEHEALTH
SERVICES.
I'M NOT SURE IF YOU'RE ALL AWARE
BUT TELEHEALTH SERVICES HAVE --
I'M NOT SURE IF YOU'RE ALL
AWARE, BUT TELEHEALTH SERVICES
HAVE -- THE RULES HAVE BEEN
LOOSENED DURING COVID WHICH WERE
VERY HELPFUL IN GETTING CANCER
TREAT M TO PEOPLE WHO COULD NOT
COME INTO THE CITY OR INTO A
HOSPITAL.
PEOPLE WHO WERE REMOTE.
WE NEED TO MAINTAIN THOSE
POLICIES TO FACILITATE
TELEHEALTH SERVICES SO WE CAN
CONTINUE TO PROMOTE THE DELIVERY
OF HIGH QUALITY CANCER CARE.
WE NEED TO OPTIMIZE
OPPORTUNITIES FOR TELEHEALTH
ACROSS STATE LINES THAT HAVE NOT
YET BEEN OPTIMIZED TO EXTEND THE
REEFN OF OUR ONCOLOGY WORKFORCE
SINCE WE HAVE A SHRINKING
WORKFORCE, MANY OF THESE PEOPLE
AREN'T IN AREAS WHERE WE NEED
THEM TO BE, NE TO HAVE OTHER
WAYS TO EXTEND THAT WORKFORCE.
AND WE NEED STRATEGIES TO ENSURE
THAT ONCOLOGY CARE TEAMS CAN
RIECH ALL INDIVIDUALS NO MATTER
WHERE THEY LIVE.
WE NEED TO PROMOTE COMMUNITY
ENGAGEMENT.
THE COMMUNITY IS EQUAL PARTNERS
WITH US.
WE NEED MORE COMMUNITY
ENGAGEMENT.
WE NEED TO ESTABLISH POLICIES
AND SUSTAINABLE FUNDING THAT
INCENTIVIZES AND SUPPORTS
COMMUNITY ENGAGEMENT.
WE NEED ENGAGEMENT OF PATIENTS
AND COMMUNITY WORKERS.
THIS IS ESSENTIAL TO ACHIEVE THE
GOAL OF MORE EQUITABLE CANCER
CARE AND CANCER CONTROL.
WE NEED TO FACILITATE ALIGNMENT
OF CANCER RESEARCH AND CLINICAL
CARE TO COMMUNITY PRIORITIES
BECAUSE CANCER RESEARCH IS
WORKING.
CANCER RESEARCH, CLINICAL
TRIALS, EVEN THE EARLIEST
CLINICAL TRIALS NOW ARE SAVING
LIVES.
WE NEED TO MAKE SURE THAT ALL
PATIENTS HAVE ACCESS.
IT'S NO LONGER A SITUATION WHERE
OH, THAT'S RESEARCH, THAT'S NOT
GOING TO HELP ME.
THAT'S NOT TRUE.
THESE NEW DRUGS ARE HAVING GOOD
RESULTS IN PATIENTS WITH
ADVANCED CANCER WHO HAVE NO
OTHER OPTIONS.
WE NEED TO MAKE SURE THIS IS
AVAILABLE TO EVERYONE.
AND WE NEED PATIENT ENGAGEMENT
IN HEALTHCARE AND RESEARCH SO
THAT WE CAN IMPROVE TRUST IN
WHAT WE DO.
WE REALIZE WE'RE NOT TRUSTED IN
ALL COMMUNITIES.
WE NEED TO IMPROVE THAT TRUST.
AND THIS IS CRITICAL TO OUR
MISSION.
WE NEED TO PRIORITIZE DATA
SHARING AND INTEGRATION.
THIS IS CRITICAL AGAIN, SO MUCH
DATA IS AVAILABLE NOW, DATA FROM
PRE-CLINICAL MODELS, FROM ALL
THE EARLY RESEARCH, BUT ALSO
FROM CLINICAL TRIALS.
WE NEED TO LEARN WHAT'S WORKING
AND WHAT'S NOT AND HOW TO
IMPROVE WHAT'S NOT WORKING.
THE ONLY WAY TO DO THIS IS
THROUGH DATA SHARING AND
INTEGRATION.
WE NEED TO ACCELERATE EFFORTS TO
IMPROVE AND INCENTIVIZE
INTEROPERABILITY.
WE NEED TO STANDARDIZE DATA.
WE NEED TO STANDARDIZE DATA
SHARING PLATFORMS.
THIS IS IMPORTANT, AND WE NEED
TO BE ABLE TO TEACH PEOPLE HOW
TO USE THEM.
WE NEED TO OPTIMIZE THE
USABILITY AND AVAILABILITY OF
THE DATA.
WE NEED TO MAKE RESULTS
AVAILABLE FROM ALL CANCER
CLINICAL TRIALS.
NOW HERE IS AN ISSUE.
A LOT OF THIS DATA IS SITTING IN
THE PRIVATE SECTOR IN
PHARMACEUTICAL COMPANIES.
IT'S NOT READILY AVAILABLE.
WE NEED TO BE READILY AVAILABLE.
SO WE CAN IMPROVE ON THEM.
WE CAN MAKE PROGRESS FASTER.
WE HAVE INSUFFICIENT LEVELS OF
INTRAOPERABILITY AND DIGITAL
MATURITY ACROSS HEALTHCARE
SYSTEMS AND I'M SURE YOU REALIZE
POOR HEALTHCARE SYSTEMS HAVE
LESS OF THESE DIGITAL SYSTEMS
AVAILABLE TO THEM.
WELL, THESE DIGITAL SYSTEMS HELP
NOT ONLY PEOPLE WORKING IN THE
HEALTHCARE SYSTEMS BUT IT ALSO
HELPS PATIENTS ACCESS THEIR
INFORMATION MORE RAPIDLY.
WE HAVE INCONSISTENT SHARING OF
CLINICAL TRIAL RESULTS, AND
AGAIN, THIS IS IN PART DUE TO
THE FACT THAT A LOT OF THIS DATA
SITS IN PHARMACEUTICAL
COMPANIES.
SO WHAT ARE THE NEXT STEPS?
WELL, THE NEXT STEPS ARE THAT WE
ARE CONTINUING TO ASSESS
PROGRESS AND IDENTIFY
OPPORTUNITIES TO BE MORE
EFFICIENT, AND EFFECTIVE IN THE
GOALS OF THIS PLAN TO MAKE SURE
THAT WE'RE ENGAGING ALL
STAKEHOLDERS THROUGH PUBLIC
MEETINGS.
OUR NEXT MEETING WILL BE NEXT
SEPTEMBER.
WE'LL DO A YEARLY MEETING THAT
WILL BE PUBLIC.
WE'LL INVITE DIFFERENT GROUPS OF
PEOPLE TO THAT MEETING, SO WE'RE
GIVING FAIR TIME TO ALL SECTORS
OF THE CANCER COMMUNITY.
AND WE'RE GOING TO ENCOURAGE AND
MONITOR PUBLIC SUBMISSIONS AND
DISCUSSIONS IN REALTIME SO THAT
WE CAN AGAIN ENGAGE DIFFERENT
GROUPS AND MAKE CONNECTIONS AND
IDENTIFY THE OPPORTUNITIES WHERE
WE NEED TO DO BETTER AND MORE
RAPIDLY.
WE'RE ALSO -- WE HAVE ANOTHER
INITIATIVE THAT'S ONGOING.
WE ARE ALSO TAKING ON REDUCING
CANCER CARE INEQUITIES THROUGH
LEVERAGING TECHNOLOGY TO ENHANCE
PATIENT NAVIGATION FROM THE TIME
OF A POTENTIAL NEW DIAGNOSIS OF
CANCER THROUGH THE CONTINUUM OF
CANCER CARE.
WE REALIZE THAT THERE ARE MANY
TECHNOLOGIES OUT THERE.
THEY'RE BEING DEVELOPED AGAIN IN
THE PRIVATE SECTOR FOR THE MOST
PART WITHOUT PATIENT CENTRIC
INFORMATION.
WE REALIZE THAT THESE CAN BE
LEVERAGED TO FACILITATE THE
NAVIGATORS WE HAVE SO THEY CAN
DO A BETTER JOB, AND WE CAN ALSO
FACILITATE PATIENT ACCESS
DURING -- FROM THE TIME OF
DIAGNOSIS AND THROUGH ALL OF
THEIR CARE.
SO WE HAVE ALREADY CONDUCTED
NATIONAL MEETINGS, WE'VE HAD
THREE MEETINGS IN THE FALL FOR
THE SERIES THAT WE'RE WORKING
ON, AND WE'RE NOW DEVELOPING OUR
REPORT TO THE PRESIDENT ON THE
CHALLENGES AND POTENTIAL
SOLUTIONS OF LEVERAGING
TECHNOLOGY TO ENHANCE PATIENT
NAVIGATION.
I THINK THAT MAY BE IT BUT I DO
HAVE JUST A FEW FINAL SUMMARY
POINTS.
I DO BELIEVE WE NEED PUBLIC
COLLABORATIVE PUBLIC AND PRIVATE
INVESTMENTS TO RECRUIT, TRAIN
AND SUPPORT AND RETAIN A DIVERSE
WORKFORCE FOR BOTH CANCER
RESEARCH AND CANCER CARE AND WE
NEED TO ENGAGE PHARMA IN
PARTICULAR TO CONTRIBUTE AND
SHARE IN THIS COST.
WE NEED CONGRESS TO ENACT LAWS
TO PERMANENTLY ALLOW MEDICARE
COVERAGE OF A FULL COMPLEMENT OF
TELEHEALTH SERVICES, AND STATES
NEED TO CONTINUE TO EXPAND
ACCESS TO TELEHEALTH.
SO IT'S REALLY, AGAIN, A
COLLABORATION BETWEEN CONGRESS
AND STATES.
WE ARE WORRIED ABOUT THE
EMERGENCY PROVISION BY MEDICARE
FOR TELEHEALTH COVERAGE, THAT'S
GOING TO END IN 2024.
THIS NEEDS TO BE EXPANDED.
IT WILL CONTINUE FOR BEHAVIORAL
APPOINTMENTS BUT NOT FOR
NON-BEHAVIORAL PROBLEM
APPOINTMENTS.
THERE'S UNEVEN DISTRIBUTION OF
ONCOLOGY PROFESSIONALS ACROSS
THE COUNTRY AFFECTING REMOTE AND
HEAVILY POPULATED AREAS, SO
AGAIN, WE NEED THIS TELEHEALTH
TO BE AVAILABLE BECAUSE THIS
WILL EXTEND THE REACH OF OUR
ONCOLOGY WORKFORCE.
THIS IS CRITICAL.
THIS IS AN EMERGENCY.
THIS IS URGENT.
HE WITH ALL NEED TO MAKE SURE
THIS HAPPENS.
SO WITH THAT, I'LL THANK YOU ALL
FOR YOUR TIME AND ATTENTION, AND
I'D LIKE TO OPEN IT UP TO
QUESTIONS OR DISCUSSION.
THANK YOU.
>> THANK YOU SO MUCH,
DR. JAFFEE, FOR YOUR UPDATE ON
THE NATIONAL CANCER PLAN AND
WHAT IS HAPPENING.
DOES ANYONE HAVE ANY -- NICOLE?
YOU CAN ASK YOUR QUESTION.
>> THANK YOU, DR. JAFFEE, FOR
YOUR PRESENTATION.
I HAVE A QUESTION ON THE NUMBER
FIVE OF YOUR PRIORITY AREAS ON
PRIORITIZING DATA SHARING AND
INTEGRATION, AND ONE OF THE BIG
ISSUES THAT YOU ADDRESSED IS
THAT A LOT OF PHARMACEUTICAL
COMPANIES, THIS DATA SITS WITH
THEM, AND THESE TRIALS,
ESPECIALLY NEGATIVE TRIALS, WE
DON'T NECESSARILY GET ACCESS TO
THAT DATA.
EVEN THOSE THAT ARE POSITIVE
TRIAL, THERE'S A LOT O OF DATA E
DON'T GET ACCESS TO.
SO WHAT ARE SOME OF THE
APPROACHES OR THE TACTICS OR
INCENTIVES THAT YOU THINK COULD
MAKE PROGRESS IN THAT AREA
BECAUSE I SEE THAT IT'S
CONTINUING TO BE A LARGE BARRIER
THAT WE CAN'T SEEM TO OVERCOME.
>> RIGHT, AND YOU'RE ABSOLUTELY
RIGHT AND YOU HIT ON IT.
WE NEED GOOD INCENTIVES.
SO THE WHITE HOUSE ASKED ME THAT
TOO.
WHEN I PRESENTED THIS LAST WEEK.
I THINK IT'S A GREAT QUESTION.
I'LL TELL YOU WHAT MY ANSWER IS.
IT MAY NOT BE THE BEST ANSWER
BUT IT MAY BE ONE SUGGESTION.
I MEAN, IT IS COMPLEX.
SO EVERYBODY HAS TO WIN.
I BELIEVE EVERYBODY HAS TO WIN.
THAT'S WHAT WE DO IN AMERICA.
WE ALL WANT TO WIN, RIGHT?
WE ALL HAVE TO GET SOMETHING OUT
OF TO BE INCENTIVIZED.
PHARMA, YOU KNOW, THEY PUT A LOT
OF MONEY INTO DRUG DEVELOPMENT.
THEY ARE HELD TO HIGH STANDARDS
BY THE FDA.
THE FDA HAS TO MAKE SURE THAT
ANY OF THEIR REGULATIONS AREN'T
GOING -- THEY CAN SHARE DATA
AREN'T GOING TO HURT THEIR
PATHWAY TO DEVELOPMENT OF THEIR
DRUGS.
THAT'S VERY IMPORTANT BECAUSE
THEIR DRUG DEVELOPMENT IS VERY
IMPORTANT TO US TOO, RIGHT?
THEY'RE DOING A GOOD THING FOR
US.
THEY ALSO NEED TO -- IF THEY'RE
GOING TO SHARE DATA, YOU KNOW,
WE HAVE COMPETITION IN THIS
COUNTRY.
I'M NOT GOING TO ARGUE WHETHER
WE SHOULD OR NOT AROUND
HEALTHCARE.
THE THING IS WE DO.
WELL, DO WE NEED TO HAVE AN
INCENTIVE THAT ALLOWS HOW LONG
THEY HAVE THE RIGHT TO PROVIDE
THESE DRUGS BEFORE OTHERS
COMPETE WITH THEM.
YOU KNOW, LENGTHEN THAT A LITTLE
BIT SO THAT THEY ARE ABLE TO
BENEFIT BY GETTING THEIR DATA
EARLY TO US AND SHARING.
NOW, THE NCI HAS DONE A GREAT
JOB OF MAKING EVERYBODY PUT DATA
FROM CLINICAL TRIALS ON THEIR
WEBSITE EARLY, AND THAT'S
NEGATIVE AND POSITIVE DATA.
SO THERE IS NEGATIVE DATA OUT
THERE.
THE PROBLEM IS, THE
PHARMACEUTICAL COMPANY ISN'T
HELD TO THAT.
SO I DO THINK THAT WE COULD ASK
THEM TO MAKE SURE THAT THEY
CONTRIBUTE THAT INFORMATION AS
WELL IN A TIMELY FASHION, AND
THAT'S THE PROBLEM.
THIS ALL HAS TO BE DONE IN A
TIMELY FASHION.
AND AGAIN, WHAT IS THE INCENTIVE
FOR THEM TO DO THAT?
WELL, TO ME THE INCENTIVE WOULD
BE TO MAKE SURE THAT THE FDA HAS
GIVEN THEM GUIDANCE THAT THEY
WILL BE ABLE TO CONTINUE THEIR
DEVELOPMENT BECAUSE THEY'RE
WORRIED THIS DATA MIGHT BE USED
IN THE WRONG WAY.
THERE ARE OTHER ISSUES AS WELL,
AND ALSO GIVING THEM SOME MORE
LEEWAY IN HOW LONG THEY HAVE TO
BE ABLE TO HAVE THEIR DRUG AS
THE FIRST DRUG APPROVED AND, YOU
KNOW, DISTRIBUTED.
>> I'D LIKE TO ADD TO THAT DATA
SHARING ISSUE.
ONCE THE DRUG HAS BEEN APPROVED
AND GETS OUT TO THE REAL WORLD,
THERE'S A LOT OF VALUE IN THIS
REAL WORLD EVIDENCE, REAL WORLD
DATA, BUT A LOT OF COMPANIES,
DATA MANAGEMENT COMPANIES CAN
SCOOP UP THAT DATA, THEY HAVE
CONTRACTS WITH HOSPITALS AND
HOSPITAL SYSTEMS, THEY SCOOP UP
THAT DATA, THEY PROVIDE THAT
DATA TO THEIR CUSTOMERS BUT
DON'T PROVIDE IT OUTSIDE OF THAT
NETWORK.
AND I JUST SEE ALL THE STOVE
PIPE DATA, I'M A REAL BELIEVER
IN CROWDSOURCING.
IF THAT DATA WERE AVAILABLE FOR
PEOPLE TO MUCK AROUND IN, WE
COULD PROBABLY FIND AMAZING
THINGS BUT WE'LL NEVER GET A
CHANCE TO SEE IT.
>> YOU'RE ABSOLUTELY RIGHT.
I TOTALLY AGREE.
AND AGAIN, YOU KNOW, IT'S THE
PRIVATE SECTOR THAT HAS -- WE
HAVE TO HAVE SOME RULES AROUND
THIS WHERE THEY ALSO ARE
INCENTIVIZED.
I HAVEN'T THOUGHT ABOUT WHAT IS
THE BEST WAY TO INCENTIVIZE
THAT, BUT YOU KNOW, IT DEPENDS
ON WHO IT IS AND WHAT THEIR
GOALS ARE IN ACCUMULATING THAT
DATA.
ARE THEY GOING TO USE IT FOR
BIOMARKERS, YOU KNOW, ARE THERE
WAYS IN WHICH WE CAN INCENTIVIZE
THAT THEY WOULD SHARE THIS DATA.
I THINK THE GOVERNMENT CAN HELP
WITH THAT.
THAT'S SOMETHING WHERE MAYBE THE
WHITE HOUSE CAN REALLY WORK TO
HELP WITH INCENTIVIZING.
I SEE VICKIE, YOU HAVE YOUR HAND
UP.
>> DR. JAFFEE, THANK YOU VERY
MUCH FOR THAT PRESENTATION.
I HAVE BEEN FOLLOWING THE
NATIONAL CANCER PLAN VERY
CLOSELY, AND I WONDER, IN THIS
CONVERSATION ABOUT THE PRIVATE
SECTOR AND DATA HOW OFTEN THERE
ARE MULTI-STAKEHOLDER MEETINGS
WHERE -- WITH THE RIGHT PEOPLE
FROM THESE COMPANIES, THAT CAN
BEGIN BUILDING THE TRUST AND
UNDERSTANDING EACH OTHER'S
RISK/REWARD BEHAVIOR SO THAT YOU
CAN BUILD THAT -- REPRESENT A
COALITION OF CHILDHOOD CANCER
ORGANIZATIONS, ABOUT 120 OF
THEM, AND WE HAVE, I THINK,
PRETTY REASONABLY GOOD
RELATIONSHIPS WITH SOME OF THE
INDUSTRY PARTNERS AND WORKING
ALSO IN EUROPE A LOT.
THE MULTI-STAKEHOLDER THINGS
DON'T BREAK DOWN ALL THE DATA
SILOS, BUT IT DOES HELP WHEN WE
KNOW EACH OTHER A LITTLE BETTER.
>> I TOTALLY AGREE WITH YOU AND
THAT WAS ANOTHER RECOMMENDATION
TO THE WHITE HOUSE, THAT THAT IS
SOMETHING THAT THEY COULD
CONVENE, RIGHT?
AND THEN WE WERE PLANNING OUR
NEXT PUBLIC MEETING BUT THAT'S
NOT UNTIL SEPTEMBER WILL BE TO
INVITE COMMUNITY-BASED GROUPS
AND PHARMACEUTICAL COMPANIES TO
TALK ABOUT DATA SHARING AND ALSO
WORKFORCE, COMMUNITY WORKFORCE.
SO I TOTALLY AGREE BUT I THINK
WE HAVE TO DO IT IN DIFFERENT
VENUES.
I THINK WE'LL HAVE ONE VEEN EU,
BUT I THINK ANOTHER VENUE WOULD
BE FOR THE WHITE HOUSE TO
CONVENE THAT.
AND I THINK THEY'VE DONE THIS IN
SOME WAYS DURING THE MOONSHOT.
I THINK THEN VICE PRESIDENT
BIDEN WAS DOING SOME OF THAT AND
THEN OF COURSE HE RAN FOR
PRESIDENT.
SO THAT WAS ONE OF OUR
SUGGESTIONS TO THE WHITE HOUSE
WHEN WE MET WITH THEM LAST WEEK.
BUT THANK YOU, YOU'RE ABSOLUTELY
CORRECT.
ANY OTHER QUESTIONS?
WELL, THANK YOU ALL FOR INVITING
ME.
I'M SORRY?
>> HI, THIS IS KRISTEN SANTIAGO.
I DON'T KNOW IF YOU SEE US OR --
WHO KNOWS.
IT'S NOT REALLY A QUESTION BUT
MORE SO A COMMENT AND MY
THINKING IS HOW DO WE MAKE SURE
THAT THIS ISN'T JUST SOMETHING
THAT SITS ON A SHELF, AND THAT
IT'S REALLY GOOD WORK AND I
THINK WE ALL CAN STAND BEHIND
WHAT'S WRITTEN DOWN AND WHAT'S
HAPPENING IN THE DISCUSSIONS.
AND THE KIND OF PLEDGES THAT
PEOPLE HAVE MADE AND THE
APPENDIX B IN HERE ARE AWESOME,
BUT HOW DO WE KEEP THOSE THINGS
MOVING FORWARD AND I ALWAYS GO
TO PAYMENT SO YOU'RE SAYING
EVERYONE HAS TO WIN AND PEOPLE
CHANGE THEIR BEHAVIOR WHEN YOU
PAY THEM GENERALLY SPEAKING IN
MY EXPERIENCE.
SO WHAT ARE THINGS THAT WE AS
THE ADVOCACY COMMUNITY CAN DO
AROUND THAT, BUT THERE'S A LOT
OF ENERGY BEHIND IT, BUT I JUST
HATE TO SEE GOOD ENERGY SIT ON
THE SHELF FOR TO THEN COME OUT
AND PAY FOR IN ANOTHER 10 YEARS
OR SO.
>> YOUR COMMENT IS EXTREMELY
HELPFUL AND RIGHT ON, AND I
THINK ALL OF YOU DO A LOT.
KNOWING WHAT WE'RE THINKING, YOU
KNOW, OUR HOPE IS THAT IN
BRINGING THIS TO DIFFERENT
COMMUNITIES INCLUDING TO THIS
MEETING HERE, ALL OF YOU WILL
THINK IN YOUR ORGANIZATIONS HOW
CAN WE THINK ABOUT PROVIDING
SUGGESTIONS FOR INCENTIVES FOR
THE DIFFERENT SECTORS TO WORK
TOGETHER, WORKING WITH OTHER
GROUPS, TELLING US -- LETTING US
KNOW WHAT WE CAN DO MORE TO HELP
THE EFFORTS.
I AGREE WITH YOU, I DON'T WANT
THIS SITTING ON A SHELF.
AND I KNOW MONICA DIDN'T WANT
THIS SITTING ON A SHELF AND I
KNOW KIM, THE CURRENT NCI
DIRECTOR, DOESN'T WANT THIS
SITTING ON A SHELF.
WE'RE ALL INVESTED.
EVERYBODY WHO HAS WORKED ON
THIS, YOU KNOW, WHO ARE
MONITORING THIS ARE VERY
INVESTED.
WE JUST NEED GUIDANCE FROM ALL
OF YOU, AND THAT'S WHY THANK YOU
FOR INVITING ME AND MY BRINGING
THIS TO YOU AND, YOU KNOW, IF
YOU HAVE SUGGESTIONS, WE ARE
OPEN TO HEARING THEM.
WE'LL COME TALK WHEREVER YOU
WANT US TO TALK.
WE'LL -- WHATEVER YOU THINK WE
CAN DO TO HELP ALL OF YOU IN
YOUR MISSION AND WE HOPE YOU
WILL HELP US IN OUR MISSION.
>> WELL, THANK YOU, DR. JAFFEE,
FOR SPENDING TIME WITH US, AND
BRINGING US UP TO DATE ON, YOU
KNOW, THE PROGRESS AND THE
UPCOMING MEETINGS AND
STAKEHOLDER MEETINGS.
WE'LL PUT THESE ON OUR
CALENDARS, AND WE JUST
APPRECIATE YOU UPDATING US AND
WE HOPE TO HEAR ANOTHER UPDATE
IN THE FUTURE.
>> THANK YOU VERY MUCH.
THANK YOU ALL FOR WHAT YOU DO.
TAKE CARE.
>> OKAY.
AND WITH THAT, WE ARE COMING TO
A QUICK 15-MINUTE BREAK.
SO PLEASE, WE WILL ADJOURN FOR
15 MINUTES AND BE BACK AT 1:45.
YES.
THANK YOU.
>> HELLO, EVERYONE.
WELCOME BACK.
I AM CALLING THE MEETING BACK TO
ORDER FOR OUR NEXT PRESENTATION.
WE'RE GOING TO WELCOME DR. JULIE
KLEMM, PROGRAM DIRECTOR IN THE
NCI CENTER FOR STRATEGIC
SCIENTIFIC INITIATIVE TO DELIVER
HER EXCITING PRESENTATION ON AI.
>> THANK YOU VERY MUCH.
I WANT TO THANK THE NCI'S OFFICE
OF ADVOCACY RELATIONS FOR
INVITING ME TO SPEAK WITH YOU
ALL TODAY.
THE RAPID ADVANCEMENT OF
ARTIFICIAL INTELLIGENCE IS
IMPACTING MANY ASPECTS OF OUR
LIVES, AND TODAY I WANT TO TALK
ABOUT ITS CURRENT APPLICATIONS
AND ITS PROMISE FOR CANCER
RESEARCH.
IN MY TALK TODAY, I'LL GIVE A
BRIEF INTRODUCTION TO THE RISE
OF ARTIFICIAL INTELLIGENCE AND
THE WAYS IT'S ADVANCING CANCER
RESEARCH, AND ALSO TALK ABOUT
THE INCREASING CONCERNS ABOUT
THE ETHICAL CONSIDERATIONS
REGARDING THE USE OF A.I. AND
HOW NCI IS PARTNERING ACROSS THE
GOVERNMENT TO ADDRESS THESE
CONCERNS.
AND AS THE FEDERAL GOVERNMENT'S
PRIMARY FUNDER OF CANCER
RESEARCH, I'LL ALSO DISCUSS A
FEW OF THE MAJOR AREAS OF NCI
FUNDED RESEARCH USING A.I.
WE USE THIS TERM ARTIFICIAL
INTELLIGENCE TO DESCRIBE REALLY
A BROAD CATEGORY OF COMPUTER
SYSTEMS THAT CAN LEARN PATTERNS
IN DATA IN WAYS THAT MIMIC HUMAN
INTELLIGENCE.
AND THESE APPROACHES CAN BE
APPLIED ACROSS THE SPECTRUM OF
CANCER RESEARCH AND CLINICAL
PRACTICE THAT INCLUDES
APPLICATIONS IN CANCER SCREENING
AND DIAGNOSIS, DRUG DISCOVERY,
CANCER SURVEILLANCE, HEALTHCARE
DELIVERY, AS WELL AS TO DERIVE
MECHANISTIC INSIGHTS.
IN RECENT YEARS, THERE'S BEEN
ADVANCES IN THREE AREAS THAT
HAVE ALL CONVERGED THAT ARE
LEADING TO THESE PROMISING NEW
APPLICATIONS OF A.I. IN CANCER
RESEARCH.
THIS INCLUDES MAJOR PROGRESS IN
THE METHODS AND ALGORITHMS FOR
TRAINING ARTIFICIAL INTELLIGENCE
MODELS, AS WELL AS IMPROVEMENTS
IN THE HARDWARE THAT ARE NEEDED
TO TRAIN THESE MODELS.
AND FINALLY, AND IMPORTANTLY,
INCREASED ACCESS TO THE LARGE
VOLUMES OF CANCER DATA, SUCH AS
IMAGING, GENOMICS, AS WELL AS
CLINICAL DATA.
LET'S SEE, I LOST THE SLIDES.
GREAT.
THANK YOU.
AND YOU CAN GO TO THE NEXT
SLIDE, PLEASE.
THANK YOU.
THE TECHNICAL LANDSCAPE OF
ARTIFICIAL INTELLIGENCE IS VERY
COMPLEX, WITH MANY CATEGORIES OF
METHODS AND CLASSES OF
APPLICATIONS, BUT I THINK IT'S
USEFUL TO THINK OF A.I. IN TWO
GENERAL CATEGORIES: PREDICTIVE
AND GENERATIVE.
PREDICTIVE A.I. IS ABLE TO LEARN
PATTERNS IN A DATASET AND THEN
USE THAT TRAINING TO MAKE
PREDICTIONS ON A SIMILAR CLASS
OF DATA THAT IT'S NEVER SEEN.
SO AN EXAMPLE OF PREDICTIVE A.I.
IS AN ARTIFICIAL INTELLIGENCE
MODEL THAT'S TRAINED TO
DISTINGUISH IMAGES OF BENIGN
SKIN LESIONS FROM MALIGNANT
MELANOMA.
THE CATEGORY OF ARTIFICIAL
INTELLIGENCE THAT'S GETTING A
GREAT DEAL OF ATTENTION TODAY IS
GENERATIVE A.I., WHERE NEW
CONTENT IS CREATED BASED ON
LEARNED PATTERNS FROM EXISTING
DATA.
AN EXAMPLE HERE WOULD BE A
CHATBOT THAT COULD TAKE IN A
CLINICAL REPORT, AND THEN
PRODUCE A PLAIN LANGUAGE SUMMARY
OF THAT REPORT.
IN CANCER RESEARCH, PREDICTIVE
A.I. HAS PRODUCED THE MOST
RESULTS TO DATE, AND THIS IS
ESPECIALLY IN THE IMAGING REALM,
WHERE IT'S BEING USED TO
INCREASE THE ACCURACY AND THE
REPRODUCIBILITY IN MEDICAL IMAGE
ANALYSIS.
ONE RECENT EXAMPLE IS FROM THIS
NCI-FUNDED STUDY FROM LEE COOPER
AND HIS TEAM AT NORTHWESTERN
UNIVERSITY, WHO DEVELOPED AN
A.I. MODEL TO PREDICT SURVIVAL
OUTCOMES FOR PATIENTS WITH
INVASIVE NON-METASTATIC BREAST
CANCER USING HISTOPATHOLOGY
SLIDE IMAGES.
WHILE PATHOLOGISTS GRADE THE
MICROSCOPIC APPEARANCE OF BREAST
TISSUE BASED ON THE CANCER
ELEMENTS, THIS NEW METHOD
ASSESSES THE TISSUE LARGELY
BASED ON THE NON-TUMOR ASPECTS,
THE STROMAL AND IMMUNE FEATURES
OF THE SLIDE.
AND IN THIS STUDY, THE A.I.
METHOD CONSISTENTLY OUTPERFORMED
PATHOLOGISTS IN PREDICTING
SURVIVAL OUTCOMES, SUGGESTING IT
COULD BE A VALUABLE TOOL TO
SUPPORT PATHOLOGISTS AND TO HELP
TAILOR TREATMENT DECISIONS FOR
INDIVIDUAL PATIENTS.
PREDICTIVE A.I. HAS ALSO
PERFORMED VERY WELL IN
EXTRACTING INFORMATION FROM
CLINICAL DOCUMENTS.
CANCER REGISTRIES INCLUDING
THOSE SUPPORTED BY THE NCI'S
SURVEILLANCE EPIDEMIOLOGY AND
END RESULTS OR SEER PROGRAM
COLLECT DATA ON HISTOLOGICAL
CANCER CHARACTERISTICS, AND THIS
INFORMATION PRIMARILY RESIDES IN
UNSTRUCTURED, HIGHLY DIVERSE
PATHOLOGY REPORTS.
AND EXTRACTING INFORMATION FROM
THESE REPORTS HAS BEEN TYPICALLY
PERFORMED BY HUMAN CURATORS FOR
THE NECESSARY QUALITY.
AND THIS IS A TIME-CONSUMING
TASK.
IN THIS NCI FUNDED STUDY, A
PREDICTIVE MODEL HAS BEEN
DEVELOPED THAT EXTRACTS
INFORMATION FROM UNSTRUCTURED
PATHOLOGY REPORTS FOR FIVE
CHARACTERISTICS THAT ARE
REPORTABLE TO CANCER REGISTRIES.
AND THIS HAS THE POTENTIAL TO
MASSIVELY SPEED UP A PREVIOUSLY
MANUAL PROCESS, AND IMPROVE THE
TIME LINES FOR CANCER REGISTRY
REPORTING.
A CRITICAL CHALLENGE OF
ARTIFICIAL INTELLIGENCE METHODS
IS THAT THEY OFTEN LACK
INTERPRETABILITY.
THEY'RE OFTEN BLACK BOXES THAT
ARE OPTIMIZED FOR PREDICTION
ACCURACY, BUT WITHOUT THE
ABILITY TO REALLY UNDERSTAND
WHAT ARE THE FEATURES AND THE
DATA THAT ARE DRIVING THE
PREDICTIONS?
SUPPORTED BY NCI, A GROUP AT
SAN DIEGO IS DOING SOME
GROUNDBREAKING WORK TO BEGIN TO
TACKLE THIS PROBLEM.
IN THIS STUDY, THEY COMBINED A
CONVENTIONAL ARTIFICIAL
INTELLIGENCE MODEL WITH ONE THAT
WAS CONSTRAINED WITH BIOLOGICAL
NETWORK KNOWLEDGE, AND THEN
THEY'D COMBINE THESE TWO MODELS
TO PREDICT THE SENSITIVITY OF
TUMOR-DERIVED CELL LINES TO
CERTAIN COMPOUNDS.
AND THIS BIOLOGICALLY
CONSTRAINED MODEL ALLOWED THEM
TO UNDERSTAND WHICH BIOLOGICAL
PATHWAYS WERE INFLUENCING DRUG
RESPONSE, AND THEY THEN USED
THIS INFORMATION TO
EXPERIMENTALLY VALIDATE SOME OF
THEIR PREDICTIONS.
THIS ABILITY TO UNDERSTAND HOW
THESE MODELS BEHAVE WILL HELP TO
INCREASE THE ACCOUNTABILITY AND
THE TRUST IN THESE PREDICTIONS.
SO GENERATIVE A.I. TECHNOLOGY IS
GETTING A GREAT DEAL OF
ATTENTION THESE DAYS AND LARGE
LANGUAGE MODELS OR LLMs, WHICH
HAVE BEEN TRAINED ON VERY LARGE
AMOUNTS OF TEXT USING A
REVOLUTIONARY A.I. METHOD
DEVELOPED AT GOOGLE ARE REALLY
DRIVING THIS ATTENTION.
CHATBOTS BASED ON THESE LLMs
HAVE THE ABILITY TO GENERATE
LANGUAGE THAT RESEMBLES THAT
PRODUCED BY HUMANS, AND THE
ABILITY TO INTERACT WITH THESE
MODELS REALLY MAKE THEM
ATTRACTIVE TOOLS IN VARIOUS
FIELDS, INCLUDING BIOMEDICAL
RESEARCH AND MEDICINE.
IN RESEARCH, CHATBOTS ARE
ALREADY IMPROVING ACCESS TO
SCIENTIFIC KNOWLEDGE AND
ASSISTING WITH TASKS LIKE
COMPUTER PROGRAMMING.
FOR PATIENT CARE, CHATBOTS CAN
HELP SUMMARIZE COMPLEX
INFORMATION FOR PATIENTS, AND
POTENTIAL -- HAVE THE POTENTIAL
TO PROVIDE PATIENTS WITH MORE
DIRECT ACCESS TO MEDICAL
KNOWLEDGE.
CHATBOTS CAN ALSO PLAY A ROLE IN
SCIENTIFIC AND MEDICAL EDUCATION
BY PROVIDING BREAKDOWNS OF
COMPLEX TOPICS AND THEY CAN EVEN
PROVIDE SIMULATED CONVERSATIONS
WITH PATIENTS TO ALLOW MEDICAL
STUDENTS TO PRACTICE TAKING
MEDICAL HISTORIES.
IT WOULD REALLY BE HARD TO
OVERSTATE THE IMPACT THIS
TECHNOLOGY IS HAVING ACROSS ALL
SECTORS, INCLUDING BIOMEDICINE,
WITH PREPRINTS AND PAPERS BEING
PUBLISHED AT AN INCREDIBLE RATE
THAT ARE SHOWING THE PROMISE FOR
MEDICAL AND RESEARCH
APPLICATIONS.
BECAUSE THIS TECHNOLOGY IS SO
POWERFUL, THERE ARE INCREASING
QUESTIONS AND CONCERNS ABOUT ITS
SAFETY AND TRUSTWORTHINESS.
SOME QUESTIONS YOU MAY HAVE
ABOUT THE USE OF ARTIFICIAL
INTELLIGENCE IN CANCER RESEARCH
AND CARE MIGHT BE, WHAT IS THE
ACCURACY AND RELIABILITY OF THE
ANSWERS PRODUCED BY A GIVEN
TECHNOLOGY?
HOW ARE SENSITIVE DATA HANDLED,
STORED AND SHARED IN THE CONTEXT
OF THESE A.I. APPLICATIONS?
WHAT ARE THE ETHICAL
CONSIDERATIONS SURROUNDING THE
USE OF PATIENT DATA FOR TRAINING
A.I. MODELS?
HOW DO THESE COMPLEX ALGORITHMS
WORK?
WHAT ARE THE FEATURES AND THE
TRAINING DATA THAT ARE DRIVING
THE RESPONSES?
AND REALLY IMPORTANTLY, COULD
THERE BE UNINTENDED CONSEQUENCES
OF APPLYING A GIVEN ARTIFICIAL
INTELLIGENCE TECHNOLOGY?
IN LIGHT OF CONCERNS LIKE THESE,
THE FEDERAL GOVERNMENT HAS BEEN
TAKING STEPS TO ADVANCE ETHICAL
AND RESPONSIBLE ARTIFICIAL
INTELLIGENCE DEVELOPMENT, AND
MOST RECENTLY IN OCTOBER 2023,
THE WHITE HOUSE RELEASED AN
EXECUTIVE ORDER TO ESTABLISH A
GOVERNMENT-WIDE EFFORT TO GUIDE
RESPONSIBLE ARTIFICIAL
INTELLIGENCE DEVELOPMENT.
IN RESPONSE TO THIS EXECUTIVE
ORDER, HEALTH AND HUMAN SERVICES
IS DEVELOPING A STRATEGIC PLAN
FOR A.I. THAT ADDRESSES THE
ELEMENTS OF THIS ORDER, AND
SEVERAL NCI STAFF ARE INVOLVED
IN THIS ACTIVITY.
THERE ARE SEVERAL EFFORTS
UNDERWAY TO PROVIDE GUIDANCE FOR
THE DEVELOPMENT AND
IMPLEMENTATION OF ETHICAL AND
TRUSTWORTHY A.I.
AN IMPORTANT TOOL THAT THE
NATIONAL INSTITUTE OF STANDARDS
AND TECHNOLOGY OR NIST HAS
DEVELOPED IS AN A.I. RISK
MANAGEMENT FRAMEWORK.
THIS PROVIDES GUIDANCE FOR THE
RESPONSIBLE DEVELOPMENT OF AN
A.I. SYSTEM THAT PROMPTS
ORGANIZATIONS TO REALLY THINK
CRITICALLY ABOUT THE CONTEXT IN
WHICH A SYSTEM WILL BE USED AND
THE POTENTIAL UNEXPECTED
IMPACTS.
THERE'S ALSO A PROJECT UNDERWAY
AT THE NATIONAL ACADEMY OF
MEDICINE SUPPORTED BY NIH AMONG
OTHER ORGANIZATIONS TO DEVELOP A
HEALTHCARE A.I. CODE OF CONDUCT,
AND THE GOAL OF THIS PROJECT IS
TO PROVIDE A GUIDING FRAMEWORK
FOR ENSURING THAT A.I. AND ITS
APPLICATIONS IN HEALTH,
HEALTHCARE AND BIOMEDICAL
SCIENCE PERFORM SAFELY, RELIABLY
AND ETHICALLY.
AT THE NIH, THE ACTIVITIES TO
ENGAGE THE COMMUNITY AND TO
ESTABLISH GUIDELINES FOR
TRUSTWORTHY AND ETHICAL A.I. ARE
PRIMARILY BEING LED BY THE NIH
OFFICE OF DATA SCIENCE STRATEGY,
AND NCI IS WORKING CLOSELY WITH
THEM ON THESE EFFORTS.
THIS HAS INCLUDED TWO COMMUNITY
ENGAGEMENT EVENTS TO GATHER
INPUT ON THE COMMUNITY'S
THOUGHTS AND FEEDBACK ON FRAME
WORKS AND GAPS FOR ETHICAL AND
TRUSTWORTHY A.I.
NCI ALSO HELD AN EQUITABLE AND
ENGAGED A.I. WORKSHOP TO ADVANCE
BIOMARKER RESEARCH, AND THIS
INCLUDED A SESSION ON PATIENT
ENGAGED A.I.
WHAT'S CLEAR FROM ALL OF THESE
WORKSHOPS IS THAT A SUSTAINED
AND ONGOING ENGAGEMENT WITH ALL
STAKEHOLDERS IN THE COMMUNITY IS
REQUIRED TO DEVELOP APPROPRIATE
GUIDELINES FOR THE USE OF A.I.
THAT WILL BALANCE SAFETY WITH
SCIENTIFIC ADVANCES.
ANOTHER IMPORTANT CONSIDERATION
FOR RESPONSIBLE A.I. DEVELOPMENT
IS ENSURING DIVERSITY AND
REPRESENTEDNESS IN THE UPCOMING
WORKFORCE.
THE A.I. FIELD CURRENTLY LACKS
DIVERSITY IN ITS RESEARCH AND
DATA AND IN RECOGNITION OF THIS,
IN 2021, THE NIH OFFICE OF DATA
SCIENCE STRATEGY LAUNCHED THE
A.I. CONSORTIUM TO ADVANCE
HEALTH EQUITY AND RESEARCH
DIVERSITY, OR THE SO-CALLED AIM
AHEAD PROGRAM, AND THIS PROGRAM
SEEKS TO INCREASE THE
PARTICIPATION AND REPRESENTATION
OF RESEARCHERS IN COMMUNITIES
THAT ARE CURRENTLY
UNDERREPRESENTED IN ARTIFICIAL
INTELLIGENCE DEVELOPMENT, AS
WELL AS TO ADDRESS HEALTH
DISPARITIES AND INEQUITIES USING
ARTIFICIAL INTELLIGENCE, AND
ALSO TO IMPROVE THE CAPABILITIES
OF THIS EMERGING TECHNOLOGY.
AT THE NCI, ARTIFICIAL
INTELLIGENCE RESEARCH IS
SUPPORTED THROUGH A WIDE VARIETY
OF GRANT AND CONTRACT PROGRAMS,
AND ELEMENTS OF ARTIFICIAL
INTELLIGENCE ARE EMBEDDED IN
NUMEROUS NCI-SUPPORTED PROGRAMS
AS THE CANCER RESEARCH COMMUNITY
INCREASINGLY INCORPORATES A.I.
METHODS INTO DISCOVERY AND
TRANSLATIONAL RESEARCH AS WELL
AS CLINICAL PRACTICE.
AND THE NEED TO PROVIDE
CONNECTION AND COORDINATION
ACROSS ALL THESE ACTIVITIES, AS
WELL AS TO COORDINATE
PARTNERSHIPS WITH OTHER
INSTITUTES AND AGENCIES, LED US
TO ESTABLISH THE TRANS NCI
ARTIFICIAL INTELLIGENCE WORKING
GROUP IN 2020.
AND THIS INCLUDES
REPRESENTATIVES FROM THE
MAJORITY OF NCI'S DIVISIONS,
OFFICES AND CENTERS, AND THIS
INCLUDES OUR OFFICE ADVOCACY
RELATIONS TO ENSURE THE CONCERNS
OF THE PATIENT COMMUNITY ARE
CONSIDERED IN THESE DISCUSSIONS.
BECAUSE THE FIELD OF ARTIFICIAL
INTELLIGENCE IS WORKING SO FAST,
OUR WORKING GROUP RECENTLY LAWN
OFFOFFERED A NEW UNIQUE SERIES F
WEBINARS CALLED CANCER A.I.
CONVERSATIONS.
THESE ARE BIMONTHLY ONE HOUR
VIRTUAL EVENTS FEATURING TIMELY
TOPICS RELATED TO THE
APPLICATION OF ARTIFICIAL
INTELLIGENCE AND CANCER
RESEARCH.
EACH OF THESE EVENTS FEATURES
SHORT TALKS FROM TWO TO THREE
SUBJECT MATTER EXPERTS WHO WILL
OFFER DIVERSE PERSPECTIVES ON
THE SESSION TOPIC, AND THIS IS
THEN FOLLOWED BY A MODERATED
PANEL DISCUSSION.
OUR NEXT TWO SESSIONS COMING UP
IN MARCH AND MAY WILL BOTH
ADDRESS ASPECTS OF MACHINE
LEARNING OR ARTIFICIAL
INTELLIGENCE IN CANCER CARE
DELIVERY.
THESE FORUMS ARE OPEN TO THE
PUBLIC AND YOU'RE VERY WELCOME
TO REGISTER AND ATTEND.
WE'VE ALSO RECENTLY LAUNCHED THE
NEW ARTIFICIAL INTELLIGENCE IN
CANCER RESEARCH WEBPAGES ON
CANCER.GOV TO PROVIDE
INFORMATION TO THE CANCER
RESEARCH COMMUNITY ABOUT NCI
FUNDING OPPORTUNITIES AND EVENTS
RELATED TO ARTIFICIAL
INTELLIGENCE IN CANCER RESEARCH.
I WANT TO END BY SHARING A FEW
MORE EXAMPLES OF NCI-FUNDED
RESEARCH THAT'S SHOWING THE
PROMISE OF SOME OF THE LATEST
A.I. TECHNOLOGIES.
THIS STUDY FROM RESEARCHERS AT
HARVARD MEDICAL SCHOOL THAT WAS
PUBLISHED JUST LAST MONTH
DEMONSTRATED THAT A LARGE
LANGUAGE MODEL COULD BE USED TO
EFFICIENTLY EXTRACT SOCIAL
DETERMINANTS OF HEALTH
CATEGORIES FROM NARRATIVE OR
UNSTRUCTURED TEXT IN ELECTRONIC
HEALTH RECORDS.
WHILE SOCIAL DETERMINANTS OF
HEALTH PLAY A CRITICAL ROLE IN
PATIENT OUTCOMES, THIS
INFORMATION IS OFTEN INCOMPLETE
IN THE STRUCTURED DATA.
THESE RESULTS DEMONSTRATE THE
POTENTIAL OF LARGE LANGUAGE
MODEL TECHNOLOGY IN IMPROVING
OUR UNDERSTANDING OF REAL WORLD
EVIDENCE ON SOCIAL DETERMINANTS
OF HEALTH AND ULTIMATELY
ASSISTING IN IDENTIFYING
PATIENTS WHO COULD BENEFIT FROM
MORE RESOURCE SUPPORT.
RESEARCH BEING SUPPORTED BY NCI
IS ALSO ADDRESSING CHALLENGES
WITH HAVING ACCESS TO SUFFICIENT
REPRESENTATIVE DATA TO TRAIN AN
A.I. MODEL THAT WILL PERFORM
WELL ACROSS MANY SITES, NOT JUST
THE SITE IT WAS TRAINED ON.
AND AN APPROACH THAT'S CALLED
FEDERATED LEARNING ALLOWS
MULTIPLE ORGANIZATIONS TO
COLLABORATIVELY TRAIN AN A.I.
MODEL WHILE AT THE SAME TIME
ENSURING THAT THE DATA REMAINS
ON THEIR SITE AND DECENTRALIZED,
WHICH IS CRITICALLY IMPORTANT
FOR PRIVATE DATA.
IN THIS STUDY FROM SPEAR OWES
FAUCES GROUP, THEY DEVELOPED A
FEDERATED LEARNING TECHNOLOGY
THAT WAS USED TO SUPPORT THE
LARGEST BIOMEDICAL FEDERATED
LEARNING PROJECT TO DATE THAT
INVOLVED DATA FROM 71 SITES
ACROSS 6 CONTINENTS TO GENERATE
A MODEL FOR AUTOMATIC TUMOR
BOUNDARY DETECTION FOR
GLIOBLASTOMA.
SO I WANT TO END BY NOTING THAT
ADVANCING THE APPROPRIATE USE OF
ARTIFICIAL INTELLIGENCE IN
CANCER RESEARCH AND CARE IS
SUPPORTING ALL ASPECTS OF THE
NATIONAL CANCER PLAN,
PARTICULARLY THE GOAL OF
MAXIMIZING DATA UTILITY.
TOWARD THE ULTIMATE GOAL OF
ENDING CANCER AS WE KNOW IT.
AND NCI IS COMMITTED TO
DEVELOPING TRUSTWORTHY ENGAGED
AND ETHICAL APPROACHES FOR THE
APPLICATION OF A.I. IN CANCER
RESEARCH, AND WE'RE WORKING IN
PARTNERSHIP WITH THE NIH AND
OTHER FEDERAL GOVERNMENT
AGENCIES TO DEVELOP THE
APPROPRIATE GUIDELINES AND
POLICIES.
AND WE KNOW THAT IT CRITICAL
THAT WE CONTINUE TO ENGAGE WITH
ALL STAKEHOLDERS, INCLUDING
PATIENTS, TO REALIZE THE
POTENTIAL IMPACT OF THIS
POWERFUL TECHNOLOGY.
THANK YOU VERY MUCH, AND I WOULD
BE VERY HAPPY TO TAKE YOUR
QUESTIONS AND TO HEAR YOUR
COMMENTS.
>> THANK YOU SO MUCH, DR. KLEMM,
FOR PRESENTING THIS VERY
INTERESTING PRESENTATION ON A.I.
I THINK WE'RE ALL CURIOUS ABOUT
WHAT'S GOING ON AND HOW IT
IMPACTS YOUR RESEARCH AND
EVENTUALLY PATIENTS.
I SEE VICKIE HAS A QUESTION.
>> I WAS SAYING, ANNIE, YOU
USUALLY START US OFF WITH THE
BEST QUESTION SO I CAN HOLD MINE
IF YOU'VE GOT ONE QUEUED UP.
IF NOT, I HAVE A SPECIFIC
QUESTION ABOUT ALPHA FOLD.
AND WHEN ALPHA FOLD CAME OUT, I
THOUGHT IT WAS MAYBE THE COOLEST
APPLICATION OF A.I. THAT I WAS
EVER GOING TO BE ABLE TO THINK
OF, AND THEN ALPHA FOLD 2.
I FEEL LIKE LAST FALL SORT OF
THE PROMISE OF ALPHA FOLD AND
THE CONNECTION TO DRUG DISCOVERY
WAS A LITTLE -- THEY KIND OF
BACKED OFF OF THAT, AND I JUST
WANTED TO HEAR WHAT YOU WERE
THINKING THESE DAYS ABOUT THE
MORE NARROW LANGUAGE MODELS LIKE
THAT THAT ARE VERY SPECIFIC BUT
THAT COULD HELP US A LOT WITH
KIND OF THE MANPOWER ISSUE THAT
WE WERE TALKING ABOUT AS A
COMMUNITY EARLIER IN THE DAY.
>> THAT'S A GREAT QUESTION.
THERE'S A LOT OF NUANCES IN YOUR
QUESTION.
TALKING SPECIFICALLY ABOUT
ALPHAFOLD AND DRUG DEVELOPMENT,
I THINK THIS IS AN AREA THAT NCI
IS VERY INTERESTED IN EXPLORING
MORE AND IN FACT AS PART OF THE
CANCER MOONSHOT, NCI IS WORKING
WITH DOE AND FDA ACTUALLY TO PUT
TOGETHER A WORKSHOP SPECIFICALLY
ABOUT HOW CAN WE BETTER LEVERAGE
ARTIFICIAL INTELLIGENCE METHODS
TO TARGET PREVIOUSLY UNDRUGGABLE
CANCER TARGETS.
THAT MAY INVOLVE STRUCTURAL
BIOLOGY APPROACHES LIKE
ALPHAFOLD, BUT ALSO LEVERAGING
AN IMPROVED UNDERSTANDING OF
BIOLOGICAL KNOWLEDGE THAT CAN BE
GAINED THROUGH A.I. THAT CAN
HELP US THINK OF MORE CLEVER
WAYS TO TARGET OTHER PARTS OF A
BIOLOGICAL PATHWAY IN WHICH AN
UNDRUGGABLE TARGET MIGHT SIT.
SO THIS IS A VERY IMPORTANT AREA
THAT WE ARE WORKING ON PURSUING
IN THE COMING YEAR.
YOU ALSO HAD A QUESTION ABOUT
USING TO ADDRESS SOME OF OUR
WORKFORCE ISSUES, AND I THINK
THAT'S A VERY IMPORTANT PART OF
THE PROMISE OF ARTIFICIAL
INTELLIGENCE.
AGAIN, I SPOKE TO SOME OF THE
EDUCATIONAL POSSIBILITIES, YOU
KNOW, MEDICAL STUDENTS USING TO
INCREASE -- YOU KNOW, TO HELP
THEM LEARN THE KNOWLEDGE THEY
NEED TO PRACTICE BEING BETTER
DOCTORS BY USING THESE CHATBOTS
AS PROXIES FOR DOING PATIENT
INTERVIEWS, I THINK THERE ARE A
TON OF OPPORTUNITIES TO USE THIS
TECHNOLOGY TO WORK MORE
EFFICIENTLY.
>> THANK YOU.
>> HI, DR. KLEMM.
THANK YOU FOR THAT PRESENTATION.
I, TOO, THINK THERE'S A LOT OF
PROMISE WITH A.I. TECHNOLOGY,
BUT I WILL SAY THERE ARE ALSO
SOME CONCERNS, SOME OF WHICH YOU
BROUGHT UP, AND I WAS AT A
RECENT MEETING WITH OTHER GRAND
MAKERS AND WE WERE --
GRANTMAKERS AND WE WERE TALKING
ABOUT HOW INCREASINGLY VERY
QUICKLY INVESTIGATORS ARE USING
A.I., GENERATIVE A.I. TO WRITE
APPLICATIONS, PULLING BACKGROUND
INFORMATION THAT MAY OR MAY NOT
BE BACKED UP BY REAL DATA, AND
SOME OF THESE CONCERNS ABOUT HOW
DO WE AS GRANTMAKERS ADDRESS
THAT OR SHOULD WE ADDRESS THAT
IN ANY WAY?
AND I'M JUST CURIOUS IF YOU HAVE
ANY THOUGHTS ON THAT.
>> I THINK THAT IS ONE OF THE
CONCERNS WE'RE SEEING AS PEOPLE
USING THESE TECHNOLOGIES WITHOUT
KIND OF A HUMAN IN THE LOOP
STEP, RIGHT?
SO I THINK MANY OF US HAVE SEEN
HOW HELPFUL IT CAN BE TO USE A
CHATBOT TO HELP SUMMARIZE
INFORMATION OR MAYBE TO BETTER
STRUCTURE SOME TEXT THAT YOU'VE
WRITTEN, BUT I THINK WE ALL HAVE
TO BE MINDFUL OF SOME OF THE
CURRENT LIMITATIONS ABOUT BEING
SKEPTICAL ABOUT SOME OF THE
ANSWERS.
AND IT IMPORTANT THAT WE USE
THESE AS A TOOL WITH OUR OWN
OVERSIGHT AND VALIDATION.
I THINK THE AREA OF VALIDATING
THE RESULTS FROM A.I. TECHNOLOGY
IS GOING TO BE AN INCREASING
AREA OF FOCUS.
I KNOW THERE ARE SOME EFFORTS
UNDERWAY TO WATERMARK
INFORMATION THAT'S CLEARLY COME
FROM CHATBOTS SO WE CAN SEE, YOU
KNOW, AND BE TRANSPARENT ABOUT
INFORMATION THAT'S COME FROM
CHATBOTS.
AND SO I THINK IT IS A POWERFUL
TOOL FOR HELPING US DO OUR WORK,
BUT IT'S NOT NECESSARILY A
SUBSTITUTE FOR THAT HUMAN IN THE
LOOP VALIDATION.
>> I WAS JUST GOING TO FOLLOW ON
WITH THAT.
THERE WAS AN ARTICLE IN STAT
THIS WEEK ABOUT THE LARGE
LANGUAGE MODELS LEARNING ON DATA
THAT HAD EMBEDDED RACIST AND
DISCRIMINATORY THINGS.
IS THAT PART OF THE ETHICAL
GUIDELINES THAT YOU SPOKE SO
ELOQUENTLY ABOUT A LITTLE BIT,
TO MAKE SURE THAT LANGUAGE
MODELS DON'T EXTEND THINGS THAT
HAD THEIR ROOTS IN EUGENICS, FOR
INSTANCE?
>> YEAH, EXACTLY.
SO SOME OF THESE MODELS FROM THE
LARGE COMPANIES HAVE BEEN
TRAINED ON DATA FROM ACROSS THE
INTERNET THAT I THINK WE ALL
KNOW IS RIDDLED WITH STEREOTYPES
AND SO FORTH, AND THAT'S ONE OF
THE IMPORTANT CONCERNS THAT CAME
OUT RIGHT AWAY AS, YOU KNOW,
WHEN CHATGPT WAS RELEASED, WERE
THE STEREOTYPES THAT COULD BE
REINFORCED HERE.
AND ESPECIALLY IN MEDICINE, WE
NEED TO ENSURE THAT THE DATA
THAT MODELS WERE USING TO MAKE
PATIENT DECISIONS WITH AND SO
FORTH IS APPROPRIATELY BALANCED.
AND THERE ARE EFFORTS ALSO TO
CREATE APPROACHES TO BE ABLE TO
IDENTIFY UNDERLYING BIASES IN
DATASETS, AND I KNOW THE CHATGPT
AND OTHER -- BART AND SO FORTH,
THESE COMPANIES ARE LOOKING AT
WAYS TO BETTER TUNE THESE MODELS
TO BE ABLE TO MINIMIZE THOSE
BIASES.
BUT IT'S A VERY IMPORTANT
CONCERN THAT I THINK THAT'S WHAT
WE NEED TO CONTINUE TO THINK
ABOUT HOW DO WE ADDRESS THAT
RISK WHEN WE'RE USING IT FOR
MAKING IMPORTANT DECISIONS.
>> SWITCHING BACK A LITTLE BIT
TO THE PREDICTIVE A.I. AND
THINGS BEING THE BLACK BOXES AS
WELL AS VISIBLE MACHINE
LEARNING, ARE THERE CERTAIN
AREAS THAT ARE MORE HARDER TO BE
AWARE OF WHETHER OR NOT VISIBLE
MACHINE LEARNING IS HAPPENING,
AND FOR PATIENT WHO MAY BE
HAVING THEIR CARE DECIDED BY,
YOU KNOW, A.I. OR TESTING OR
OTHER THINGS, HA IS THERE ANY WY
FOR OUR PATIENTS TO ASK OR FIND
OUT WHETHER OR NOT THE ALGORITHM
IS VISIBLE OR IF IT'S IN A BLACK
BOX?
WHAT CAN WE DO ON OUR SIDE?
>> WELL, I THINK PATIENTS SHOULD
ALWAYS BE ASKING THE HARD
QUESTIONS OF THEIR DOCTOR.
SO I THINK THAT IS SOMETHING
THAT PATIENTS CAN AND SHOULD DO.
,
IS ASK THOSE QUESTIONS.
ABOUT HOW
THEIR DATA IS BEING ANALYZED.
IN TERMS OF DATA THAT MIGHT BE
MORE DIFFICULT FOR CREATING
VISIBLE MODELS, IT IS -- IT'S A
VERY ACTIVE AREA OF RESEARCH
RIGHT NOW, THIS NEED TO HAVE
EXPLAINABLE MODELS TO ENSURE
THAT THE FEATURES THAT THESE
MODELS ARE RECOGNIZING ARE
UNDERSTANDABLE AND APPROPRIATE
IS GOING TO BE CRITICAL TO
INCREASING THE ADOPTION OF THESE
TECHNOLOGIES.
EVEN IN COMPUTER VISION, THERE
IS INCREASING RESEARCH TO BE
ABLE TO EXPLAIN SOME OF THE
FEATURES THAT THE MODELS BEING
TRAINED ON.
SO I THINK TH THIS IS A AN AREAF
ACTIVE RESEARCH.
BUT I THINK THIS IS WHEREAS WE
CONTINUE TO DEVELOP THESE
ETHICAL GUIDELINES INVOLVING
PATIENTS IN THESE CONVERSATIONS
I THINK IS IMPORTANT, AND HAVING
PATIENTS ASK THE HARD QUESTIONS,
I THINK IS CRITICAL TO ENSURING
THAT THESE CONSIDERATIONS MAY
REMAIN ON THE FOREFRONT.
>> NO FURTHER QUESTION, I JUST
WANT TO THANK YOU FOR SPENNING
SPENDINGTIME WITH US AND BRINGIS
TO OUR ATTENTION AND HELPING US
WITH SOME LANGUAGE AROUND THIS
RAPIDLY EMERGING FIELD, AND
EXCITING AND SCARY AT THE SAME
TIME.
SO THANK YOU FOR YOUR WORK AND
WHAT YOU ARE DOING AND FOR
SPENDING TIME WITH US.
>> THANK YOU FOR THE
OPPORTUNITY.
>> OKAY.
DO WE HAVE ANYTHING ELSE
BEFORE -- OKAY.
SO BEFORE WE GET TO GO HOME, WE
NEED TO APPROVE THE SUMMARY OF
OUR LAST MEETING.
IT WAS INCLUDED IN THE BOARD
MATERIALS AND SO BEFORE WE CAN
VOTE ON IT, I NEED TO HAVE A
MOTION TO APPROVE IT.
>> I'LL JUST POINT OUT IT WASN'T
A VIRTUAL MEETING, IT WAS AN
IN-PERSON MEETING?
IT SAYS VIRTUAL MEETING.
>> DO YOU MEAN THE LAST --
>> OCTOBER 4TH?
>> OH, IT SAYS VIRTUAL ON IT.
SO WE CAN APPROVE WITH THAT
CHANGE.
>> I MOVE TO APPROVE.
>> OKAY.
SO DO I HAVE A SECOND TO APPROVE
WITH THE CHANGE?
OKAY.
>> I SECOND THE CHANGE ALSO.
>> OKAY.
THAT'S PERFECT.
OKAY.
SO ALL OF THOSE IN FAVOR, PLEASE
SAY AYE.
ANY OPPOSED?
HEARING NONE OPPOSED, IT CARRIES
UNANIMOUSLY, AND DO WE HAVE ANY
OTHER -- OUR NEXT MEETING WILL
BE WEDNESDAY, JUNE 26TH.
THIS ONE WILL BE VIRTUAL.
AND WITH THAT, I THINK AMY AND
VINCENT AND THE WHOLE TEAM, I
THANK DR. RATHMELL FOR BEING
WITH US AND EVERYONE HERE, SO
THANK YOU ALL AND SAFE TRAVELS
HOME.
THANKS, EVERYBODY.
WE ARE NOW ADJOURNED.
THANK YOU.