WELCOME TO THE NATIONAL
ADVISORY BOARD ON MEDICAL
REHABILITATION RESEARCH COMING
FROM THE NIH.
WE'RE GOING TO START BY GOING
AROUND WITH INTRODUCTIONS, SO
I'M GOING TO START BY HAVING THE
CHAIR OF THE BOARD BARBARA
BREGMAN MAKE THE INTRODUCTIONS
FROM TEAM IN THE ROOM AND PEOPLE
THAT ARE JOINING US FROM THE
ZOOM WORLD.
>> THANKS.
I AM THE INTERIM CHAIR OF REHAB
MEDICINE GEORGETOWN UNIVERSITY,
DIRECTOR OF RESEARCH AND
TRAINING AT MEDSTAR NATIONAL
REHABILITATION TRAINING
HOSPITAL.
AS WE GO AROUND, IF THOSE OF US
WHO ARE CONTINUING MEMBERS CAN
JUST STAY WHERE YOU'RE FROM AND
WE'LL ASK THE NEW MEMBERS TO SAY
A LITTLE BIT MORE ABOUT THEIR
BACKGROUND AND THEIR INTERESTS.
AND SO IF WE CAN GO AROUND THE
TABLE I WILL START WITH BOB OVER
THERE.
>> BOB SANBERG, PENN STATE
UNIVERSITY.
>> UNIVERSITY OF HOUSTON, PEPE
CONTRERAS.
>> KATHY ZAKOWSKI.
>> DAWN EDIE, UNIVERSITY OF
WASHINGTON.
>> LINDA EHRLICH JONES FROM THE
LAB.
I'M NURSE BY BACKGROUND,
ASSOCIATE DIRECTOR OF PATIENT
OUTCOMES RESEARCH, ALSO A
RESEARCH PROFESSOR AT
NORTHWESTERN UNIVERSITY FEINBERG
SCHOOL OF MEDICINE.
>> TRISHA D DOOR, REHABILITATION
AND DEPARTMENT OF VETERANS
AFFAIRS.
>> THERE'S AN ERROR ON THE
AGENDA, IT'S VETERAN AFFAIRS.
>> DIRECT IMPROVE MEDICAL CENTER
FOR NATIONAL REHABILITATION
RESEARCH, THE REASON YOU'RE
HERE.
THANKS YOU FOR COMING.
AND I'M LOOKING FORWARD TO THE
NEXT COUPLE DAYS.
>> EMORY UNIVERSITY, AND MY AREA
OF RESEARCH IS IN CAREGIVING AND
STROKE, SARAH BLANTON, EDITOR OF
THE JOURNAL OF COMMUNITIES AND
REHABILITATION.
>> WELCOME.
>> PHYSICIAN AND RESEARCHER,
INDIANA RESEARCH, DO MOSTLY
BRAIN INJURY RESEARCH.
>> MICHELLE JOHNSON, UNIVERSITY
OF PENNSYLVANIA.
>> GOOD MORNING, DAUFIN CHEN,
NATIONAL NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDER AND
STROKE.
>> IF WE CAN GET THE FOLKS WHO
ARE JOINING US ON THE SCREEN TO
PLEASE INTRODUCE YOURSELVES.
I CAN'T SEE VERY WELL, I'LL
HELP.
STEVE KATAN.
>> CHRIS JADEN, UNIVERSITY OF
BUFFALO.
>> AND SHERRY.
>> GOOD MORNING, SPALDING REHAB
HOSPITAL, HARVARD MEDICAL
SCHOOL.
>> FRANCISCO, YOU'RE MOVING
AROUND ON ME, SORRY.
>> YES, GOOD MORNING, FRANCISCO,
UNIVERSITY OF SOUTHERN
CALIFORNIA IN LOS ANGELES.
>> LOUIS?
>> GOOD MORNING, LOUIS, GEORGIA
TECH.
>> CHIEF OF TECHNICAL ASSISTANCE
UNIT REHABILITATION SERVICES
ADMINISTRATION AT THE DEPARTMENT
OF EDUCATION.
>> AND WADE, I DON'T SEE YOUR
VIDEO BUT I HOPE YOU'RE THERE.
>> I'M HERE, CAN YOU HEAR ME?
>> YES.
>> I'M HAVING CAMERA PROBLEMS.
IT WAS WORKING EARLIER SO I'LL
WORK ON THAT.
WADE SCHRADER, PEDIATRIC
ORTHOPEDIC SURGEON, NEMOURS, AND
PROFESSOR AT THOMAS JEFFERSON
UNIVERSITY, CHAIR OF CEREBRAL
PALSY.
>> THANKS, WADE.
A COUPLE EX OFFICIOS JUMPED ON
THE SCREEN.
ARE THEY STILL THERE?
I WANT TO GET THE EX OFFICIOS
FIRST.
NOPE, WE LOST THEM?
STEVE IS NOT HERE YESTERDAY.
>> GOOD MORNING, LYNDON JOSEPH,
NATIONAL INSTITUTE ON AGING, AND
GLAD TO TO BE WITH YOU, LOOKING
FORWARD TO THE MEETING.
>> THANKS, LYNDON.
>> GOOD MORNING, EVERYONE.
I'M A PROGRAM DIRECTOR FROM THE
NATIONAL INSTITUTE ON DEAFNESS
AND OTHER COMMUNICATION
DISORDERS.
THANK YOU.
>> RICK SEGAL, OUR GUEST.
>> MEDICAL UNIVERSITY OF SOUTH
CAROLINA, HERE REPRESENTING THE
MR3 NETWORK.
>> WE WANT TO ADD ONE OTHER EX
OFFICIO THAT JUST JOINED.
>> DIRECTOR OF NIDILRR.
AND THEN IF THE STAFF COULD WAVE
AND SAY HI.
>> ARE THERE ANY OTHER EX
OFFICIOS WHO JOINED US ONLINE?
OKAY.
WE'LL CATCH THEM LATER.
>> SO JUST SO YOU'RE PLANNING
AHEAD, THE NEXT MEETING WILL BE
MONDAY AND TUESDAY, FIRST WEEK
OF MAY.
AND THEN MONDAY, TUESDAY, FIRST
WEEK OF DECEMBER FOLLOWING THAT.
I THINK IT SHOULD BE IN YOUR
NOTES.
GET IT ON YOUR CALENDAR NOW.
SO YOU DON'T UNEXPECTEDLY
OVERBOOK.
THE MEETING IS BEING RECORDED.
SO THAT YOU KNOW THAT.
AND WILL BE AVAILABLE LATER IF
YOU WANT TO GO BACK, OR SHARE IT
WITH ANY OF YOUR COLLEAGUES.
SO, YES, YOU'VE HAD A CHANCE TO
REVIEW THE MINUTES.
CAN I ASK IF THERE ARE ANY
CHANGES OR IF ANYONE WOULD GO
AHEAD AND MOVE TO ACCEPT?
>> (INAUDIBLE).
>> GOOD MORNING, I WANT TO ALSO
INTRODUCE MYSELF IF I MAY, STEVE
CRAMER, WHERE THE SUN HASN'T
COME UP YET.
I STILL HAVEN'T BEEN CLEARED SO
I'M AD HOC.
GOOD MORNING, EVERYONE.
>> GREAT TO HAVE YOU, STEVE.
>> THANKS, STEVE.
>> DO WE HAVE A MOTION?
>> A MOTION TO -- YES, WE HAVE A
MOTION.
GOOD.
>> DO WE HAVE A SECOND?
>> OKAY, AND IF YOU HAVE
CONSEQUENT CHANGES OR
CORRECTIONS TO THE MINUTES OR
EVEN TO THE ROSTER, FEEL FREE TO
LET ME KNOW AND WE'LL KEEP THEM
UPDATED.
THANK YOU.
NOW WE'LL HAVE A VOTE TO ACCEPT
THE MINUTES.
ALL IN FAVOR OF ACCEPTING RAISE
YOUR HAND INCLUDING THOSE
ONLINE.
THANK YOU.
ANY OPPOSED?
ALL RIGHT, THANK YOU.
BARBARA?
>> DO WE HAVE DR. BIANCHI YET?
WE'RE TOO EARLY.
WE'LL SWITCH THINGS UP.
I'LL DO MY UPDATE FIRST.
WE WERE TOO EFFICIENT.
>> ALSO, DO WE HAVE OUR DoD
REPRESENTATIVE THERE YET?
I THINK IT'S MATTHEW.
>> YES, GOOD MORNING, I'M HERE.
LIEUTENANT COLONEL MATT LOPREST
HERE REPRESENTING THE DIRECTOR,
I'M THE DIRECTOR OF
PSYCHOLOGICAL HEALTH.
OVER.
>> OKAY.
APPRECIATE YOU JOINING US.
I GUESS WE'RE ALL SET NOW.
GO AHEAD.
>> GIVE ME A WAVE WHEN DR.
BIANCHI GETS ON, THANK YOU.
NEXT SLIDE.
I'D LIKE TO TALK ABOUT STAFF
UPDATES AND THE COLLABORATIONS
WE HAVE, HIT ON SCIENCE ADVANCES
BECAUSE THAT'S WHY YOU'RE MOSTLY
HERE, THE COOL SCIENCE, LEAVING
TIME FOR QUESTIONS.
NEXT SLIDE.
WE HAVE A NEW STAFF MEMBER SINCE
MAY.
JUNE L LEE.
SAY HI.
JUNE HAS MANY YEARS OF
EXPERIENCE AT NIH, COMING ON TO
HELP ME AT SPECIAL ASSISTANT.
BACKGROUND IN PHARMACOLOGY.
BUT HER PASSION IS IN ARTIFICIAL
INTELLIGENCE, SO YOU MAY BE
SEEING SOME MORE OF THAT COMING
THROUGH.
WE'RE GLAD TO HAVE HER.
A SHOUT OUT TO TOYIN AJISAFE, A
PROGRAM OFFICER, RECENTLY
COMPLETED SOME LEADERSHIP
TRAINING.
JOE IS GOING TO BE STARTING MORE
LEADERSHIP TRAINING SO WE
CONTINUE TO GROW OUR STAFF.
AND THEN BECAUSE I LIKE TO BRAG
ABOUT THEM, WE HAD A VERY
SUCCESSFUL YEAR IN GETTING
AWARDS AT NICHD.
JOE, SUE, MARIA ALL GOT
DIRECTOR'S AWARD, THEY WERE
GOING TO GET THEM IN PERSON NEXT
WEEK BUT WE HAD SCHEDULED ISSUES
SO THEY WILL GET THEM IN JANUARY
OR FEBRUARY.
BUT VERY PROUD OF THE WORK THEY
HAVE BEEN DOING AND HAVING THAT
RECOGNIZED AT A HIGHER LEVEL.
NEXT.
I KNOW, BECAUSE I'M TRYING TO BE
MODEST.
I CAN'T.
MY MOTHER WOULD BE SHAMEFUL.
OKAY, NEXT.
OKAY.
ONE MORE, ALL RIGHT.
SO I THINK YOU KNOW THAT THE
MAIN THRUST WE'VE BEEN WORKING
ON OVER THE LAST YEAR OR SO HAS
BEEN IN PROMOTING ABLEISM
RESEARCH AT NIH.
I'M PLEASED TO SAY THAT WE HAD
AN RFA WITH A DUE DATE LAST
WEEK, SO THEY ARE COMING IN, I'M
LOOKING AND I'M VERY EXCITED
ABOUT THE NUMBER OF RESPONSES
THAT WE'VE GOTTEN.
BUT WE DON'T HAVE THE FINAL
NUMBER YET.
WE PROBABLY WON'T HAVE ANY
AWARDS MADE BY FEBRUARY BUT A
YEAR FROM NOW, BY MAY, NEXT TIME
WE MEET, BUT A YEAR FROM NOW,
WE'LL BE ABLE TO TALK ABOUT WHAT
WAS SUPPORTED THROUGH THIS RFA.
ANOTHER EXCITING PART OF THIS IS
THAT WE HAD GREAT SIGN-ON FROM
OTHER I.C.s AT NIH.
SO THE NATIONAL EYE INSTITUTE,
NATIONAL CANCER INSTITUTE,
NATIONAL INSTITUTE OF
BIOENGINEERING CONTRIBUTED FUNDS
TO THIS OPPORTUNITY AND WE HAD
SIGN-ON FROM OFFICE OF RESEARCH
ON WOMEN'S HEALTH, AND OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCE,
OBSSR.
SO THIS IS REALLY SOMETHING LED
BY NCMRR BUT IS ACROSS THE NIH.
NEXT SLIDE.
WE'VE ALSO MADE SOME CHANGES TO
OUR EARLY CAREER RESEARCH AWARD,
R 3, WE HEARD FROM THE FIELD
THAT ONE DUE DATE WAS NOT
SUFFICIENT, AND WE HEARD FROM
OUR REVIEW BRANCH THAT THEY WERE
GETTING TOO MANY APPLICATIONS IN
ONE DUE DATE SO THESE ARE I
THINK ALL VERY GOOD THINGS.
SO, WE WERE ABLE TO SWITCH TO
THREE TIMES A YEAR, SO NOW THEY
WILL BE REVIEWED IN OUR REGULAR
NCMRR STUDY SESSION RATHER THAN
THIS SEPARATE SET.
SO IT WILL BE EASIER FOR PEOPLE
TO RESPOND AND RESUBMIT QUICKLY.
OKAY.
NEXT.
I THINK A LOT OF PEOPLE HAVE
BEEN SAYING IT'S NICE TO TRAVEL
AGAIN.
AND WE ARE FINALLY MAYBE IN THE
POST-PANDEMIC WORLD, SO NCMRR
STAFF HAS BEEN DOING A GREAT JOB
OVER THE LAST SIX MONTHS GETTING
OUT TO CONFERENCES, GETTING OUT
TO SEE YOU ALL.
THIS IS JUST THE ONES I COULD
REMEMBER.
SOME OF THEM WERE LOCAL, WE DID
SOME SIGNIFICANT TRAVEL TOO.
BUT IF THERE ARE WORKSHOPS,
CONFERENCES THAT YOU THINK IT
WOULD BENEFIT, YOU KNOW, THE
FIELD AS WELL AS US, TO BE
THERE, PLEASE LET US KNOW.
AND WE'RE HAPPY TO SEE WHAT WE
CAN DO AND EVERYBODY IS
TRAVELING SO ALL THE PROGRAM
OFFICERS, IT'S BEEN GREAT.
NEXT SLIDE.
I DID WANT TO CALL OUT ONE
SPECIAL TRIP.
IN JULY I GOT TO GO TO THE WORLD
HEALTH ORGANIZATION HEADQUARTERS
IN GENEVA.
WE HAD THE THIRD GLOBAL REHAB
2030 MEETING.
AND THIS REALLY HAD TWO
PURPOSES.
ONE WAS WE WERE ACKNOWLEDGING
THAT THE WORLD HELD ASSEMBLY HAD
PASSED A RESOLUTION TO
STRENGTHEN REHAB IN HEALTH
SYSTEMS.
AND THIS WAS REALLY THE FIRST
TIME THAT W.H.O. HAD SAID REHAB
IS IMPORTANT, IT NEEDS TO BE
PART OF THE UNIVERSAL HEALTH
CARE AND WE NEED TO DO THE
RESEARCH TO SUPPORT THESE
IMPLEMENTATION.
SO A YEAR OR SO AGO, MAYBE A
YEAR AND A HALF, WE HAD WALTER
FRONTIERA, ONE OF THE CHAIRS OF
THE RESEARCH LEG OF THIS
PROGRAM, COME AND TALK TO YOU
ALL AND TELL A LITTLE BIT ABOUT
THE WORLD REHAB ALLIANCE, WHICH
IS THE KIND OF NON-PROFIT -- IN
THE MIDDLE THERE FROM W.H.O. SHE
SAYS IT'S TWO SIDES OF THE SAME
COIN, THE WORLD REHAB ALLIANCE
ON ONE SIDE WHICH IS
PROFESSIONAL ORGANIZATIONS, AND
ON THE OTHER SIDE THIS REHAB
2030 WHICH IS BUILDING THE
EVIDENCE BASE.
THEY PUT OUT SOME GREAT PRODUCTS
OVER THE LAST FIVE YEARS THEY
HAVE BEEN WORKING REALLY HARD ON
THIS, AND NIH HAS SUPPORTED THEM
IN PUTTING TOGETHER THESE
PACKAGES OF PRIORITY SERVICES,
AND PUTTING TOGETHER METRICS
FROM MEASURING REHAB
CAPABILITIES IN COUNTRIES SO
THIS WAS REALLY EXCITING FOR ME.
AND THEN ON THE LEFT IN THAT
PICTURE IS LANA SHEKHAM
REPRESENTING DEAFNESS AND
COMMUNICATION DISORDERS, AND SHE
RETIRED A COUPLE MONTHS AGO SO I
WAS HAPPY TO HAVE ONE LAST TRIP
WITH HER.
OKAY.
NEXT SLIDE.
SOMETIMES COOL THINGS END UP IN
MY IN BOX.
WHILE AT ACRM I GOT THIS
INVITATION.
WHEN IT SAYS "FROM THE OFFICE OF
THE PRESIDENT" I SHOULD PROBABLY
GOING, AND IT WAS TWO DAYS
LATER, SOMETHING LIKE THAT.
SURE, ABSOLUTELY, I'D LOVE TO BE
THERE.
NEXT SLIDE.
AND WHAT IT WAS WAS A
CELEBRATION OF AMERICAN
POSSIBILITIES.
THERE'S THIS BIG DEMO ROOM, YOU
KNOW, DISPLAY ROOM THAT HAD
DIFFERENT SECTIONS AND ONE WAS
ON HEALTH, ONE ON ARTIFICIAL
INTELLIGENCE, ONE WAS MILITARY,
ONE WAS SPACE, ONE WAS, I DON'T
KNOW, SCIENCE STUFF.
AND THE SECTION ON HEALTH CARE
WAS ALL REHAB.
SEVEN OF THE TEN DISPLAYS WERE
OF REHAB.
IT WAS JUST INCREDIBLE TO SEE
HOW MUCH REPRESENTATION WE HAD.
WE HAD PEOPLE FROM UCSF TALKING
ABOUT THE BRAIN/COMPUTER ENTIRE
FACE WORK, UPPER LIMB
PROSTHETICS, RAMU JUNG
UNIVERSITY OF ARKANSAS ON THE
RIGHT SUPPORTED BY NIH AND
OTHERS, MAINLY NIBIB.
WE HAD LOTS OF V.A.
REPRESENTATION, ON THE LEFT RORY
COOPER IS HOLDING A LOW-COST
LIGHT WEIGHT WHEELCHAIR, DOESN'T
LOOK LIKE IT, BUT IT CAN BE --
THIS IS 25% SCALE BUT IT CAN BE
SHIPPED FLAT ANYWHERE, AND THEN
YOU FOLD IT TOGETHER, AND NOW
YOU HAVE THIS LIGHTWEIGHT
WHEELCHAIR.
THERE'S HUGE POSSIBILITIES FOR
OF COURSE PEDIATRICS AS WELL AS
LOW LOW- AND MIDDLE-INCOME
COUNTRIES, SUPPORTED LARGELY BY
THE V.A., SO EXCITED TO SEE
THAT.
LOWER LIMB PROSTHETICS,
EXOSKELETONS, GROUP FROM THE
BRONX V.A. WAS THERE, AS WELL AS
TEAM GLEASON DEMONSTRATING EYE
GAZE COMMUNICATION AND
WHEELCHAIR CONTROL FOR MS
PATIENTS.
AS I'M WAITING TO SPEAK TO THE
GENTLEMAN USING EYE GAZE, I LOOK
OVER AND MONICA BERTAGNOLLI IS
STANDING THERE TALKING TO HIM,
AND SHE IS OF COURSE OUR NEW NIH
DIRECTOR AND THIS IS ACTUALLY ON
THE DAY SHE GOT CONFIRMED.
IT WAS A COUPLE HOURS BEFORE, SO
SHE IS VERY AWARE OF THE
IMPORTANCE OF REHAB, GREAT TO
MEET HER AND SAY HI, ALTHOUGH
SHE WAS PRETTY BUSY THAT DAY.
YEAH, SO THAT WAS -- I JUST
WANTED TO SHARE HOW EXCITING I
THOUGHT THAT ALL WAS.
OKAY.
I THINK YOU KNOW THAT WE VALUE
COLLABORATIONS, AND THE WAY WE
ARE ABLE TO WORK WITH OTHERS AT
NIH.
SO, I WANTED TO ACKNOWLEDGE A
LOT OF WORK NINDS HAS BEEN DOING
IN DIGITAL ENDPOINTS AND DIGITAL
HEALTH TECHNOLOGIES.
THEY HAD A SERIES OF WORKSHOPS,
THAT MIDDLE ONE ON SEPTEMBER 29
I THINK IS OF PARTICULAR
INTEREST TO THIS GROUP.
IF I HAVE THAT RIGHT IN MY HEAD,
THE (INDISCERNIBLE) FUNCTION,
AND WHEN I THINK ABOUT WHAT THE
FUTURE OF CLINICAL TRIALS ARE
GOING TO LOOK LIKE, I THINK THIS
IS KIND OF THE BIGGEST IMPACT
THAT WE'RE GOING TO HAVE.
OKAY.
SO, I WOULD ENCOURAGE PEOPLE TO
GO BACK AND LOOK AT THOSE
WORKSHOP RECORDINGS, IF THIS IS
OF INTEREST TO YOU, LOOKING AT
WHAT FDA IS ACCEPTING AS DIGITAL
ENDPOINTS, WHICH I THINK IS
VERY, VERY INTERESTING.
THE SECOND WORKSHOP IS NEXT
WEEK.
AND THIS IS A COLLABORATION
BETWEEN SEVERAL NIH INSTITUTES,
BUT IT'S GOING TO BE -- IT IS
BEING LED BY NCCIH, NATIONAL
CENTER ON COMPLEMENTARY AND
INTEGRATIVE HEALTH.
AND WE'RE CO-SPONSORING IT.
THIS WORKSHOP I THINK MANY OF
YOU KNOW THAT FRANCIS COLLINS,
THE FORMER NIH DIRECTOR, IS VERY
INTERESTED IN MUSIC.
SO THIS IS A COLLABORATION
BETWEEN NIH, THE NATIONAL
ENDOWMENT FOR THE ARTS, THE
KENNEDY CENTER AND RENÉE FLEMING
FOUNDATION.
AND SHE IS CO-CHAIRING THIS WITH
DR. COLLINS.
SO WE ARE EXCITED THAT
REHABILITATION IS REPRESENTED IN
THIS WORKSHOP, SOME GRANTEES
WILL BE THERE, AND WE ARE VERY
EXCITED TO BE A PART OF THAT.
OKAY.
NEXT.
I DON'T KNOW THAT WE TALK ABOUT
OUR COLLABORATIONS WITH THE EYE
INSTITUTE ALL THAT MUCH, BUT
OVER THE LAST YEAR WE HAVE
REALLY GROWN OUR CONNECTION WITH
THEM.
I WAS GOING TO SAY LAST WEEK BUT
IT WAS LAST MONTH, WE HOSTED A
WORKSHOP WITH THEM AS WELL AS
NINDS, ON CORTICAL VISUAL
IMPAIRMENT, CVI, SOMETHING THAT
CAME THROUGH AS A MAJOR UNMET
HEALTH NEED WHEN WE WERE WORKING
WITH NINDS ON THE CEREBRAL PALSY
RESEARCH PLAN SO WE HEARD THAT
THIS WAS A REAL NEED.
AND NEI DID STRATEGIC PLAN A
COUPLE YEARS AGO AND IT REALLY
CAME OUT AS A MAJOR ISSUE FOR
THEM.
SO THEY HAVE TAKEN IT UP, FIRST
HOSTING THIS WORKSHOP, BUT THE
PLAN AND THIS WAS KIND OF THE
KICK START TO DEVELOP A
REGISTRY, TO HELP UNDERSTAND HOW
TO DIAGNOSE CVI AND EVENTUALLY
LOOK AT TREATMENTS SO WE'LL BE
HEARING MORE FROM THEM AND THEN
IN OUR PUBLICATION YOU SEE A
PICTURE OF VISION REHAB BEING A
FOCUS OF THE NIH RESEARCH
MATTERS.
SO I JUST WANTED TO ACKNOWLEDGE
THE GREAT WORK NEI AND
PARTICULARLY SHERRY WIGGS, THE
PROGRAM OFFICER WE WORK WITH
THERE A LOT.
OKAY.
NEXT.
WE'VE TALKED ABOUT THIS
COLLABORATION WITH NIBIB A FEW
TIMES, BUT THEY DID THIS
WONDERFUL UNDERGRADUATE PRIZE
COMPETITION AND A FEW YEARS AGO
WE DECIDED TO SPONSOR REHAB AND
ASSISTIVE TECHNOLOGIES PRIZE.
ON THE RIGHT WE HAVE A PICTURE
OF THE WINNING SUBMISSION FROM
THE UNIVERSITY OF CALIFORNIA IN
SAN DIEGO, AND THIS IS AN
ADJUSTABLE PROSTHETIC SOCKET.
YOU KNOW, 30 OR 40% OF THE 100+
APPLICATIONS THAT COME IN ARE
RELATED TO REHAB AND ASSISTIVE
TECHNOLOGY SO I'M HEARTENED THAT
THERE'S A LOT OF INTEREST FROM
THE NEXT GENERATION IN
DEVELOPING THESE TYPES OF
INTERVENTIONS AND TOOLS.
SO CONGRATULATIONS TO THEM.
AND WE MADE THESE AWARDS AT THE
END OF THE FISCAL YEAR SO WE'LL
PROBABLY BE STARTING THE NEXT
ONE UP AGAIN, SO IF YOU GUYS
HAVE UNDERGRADUATE TEAMS THAT
MIGHT BE GOOD CANDIDATES, PLEASE
THINK OF THIS.
USUALLY AROUND JANUARY WE
ANNOUNCE THE NEXT CALL FOR
APPLICATIONS AND THEY ARE
TYPICALLY DUE IN MAY.
NEXT.
SO, I'VE BEEN TALKING ABOUT
COLLABORATIONS THAT WE'VE DONE
WITH OTHER INSTITUTES AT NIH.
AND NOW I WANT TO SHIFT TO TALK
ABOUT ONE THAT WE'VE DONE WITH
ANOTHER HHS AGENCY, THE CDC.
FIVE OR SIX YEARS AGO WE STARTED
COLLABORATING WITH THEM ON THE
PREGNANCY RISK ASSESSMENT AND
MONITORING SURVEY, PRAMS,
SUPPORTING A SUPPLEMENT TO ASK
ABOUT DISABILITY.
WE HAVE THEM ADD THE DISABILITY
QUESTIONS FROM THE WASHINGTON
GROUP TO TRY TO LOOK AT THIS
INTERSECTION BETWEEN, YOU KNOW,
PEOPLE WHO HAVE BABIES AND THE
INTERSECTION WITH DISABILITY
STATUS.
SO, THIS IS SOME DATA THAT THE
GROUP IS ABLE TO PULL TOGETHER.
IT WAS PRESENTED PREVIOUSLY AT
THE CITY MATCH CONFERENCE IN
SEPTEMBER.
HERE IS AN EXAMPLE OF THE THINGS
WE ASK ASK.
WHAT WERE THE STRESSORS
EXPERIENCED DURING THE COVID-19
PANDEMIC AMONG -- AND CDC USES
WOMEN, I'LL SAY PEOPLE WHO HAVE
BABIES, THEIR DISABILITY
STATUS, PEOPLE WITH LIVE BIRTH,
COLLECTED DATA THE FOLLOWING
YEAR, ABLE TO GET 14
JURISDICTIONS I THINK ROUGHLY
STATES THAT HAD BOTH THIS
DISABILITY SUPPLEMENT AS WELL AS
MATERNAL COVID-19 EXPERIENCE
SUPPLEMENT.
SO JUST TO SHOW A LITTLE BIT OF
THE DATA, NEXT SLIDE, I DON'T
THINK THIS IS SURPRISING TO FIND
THAT PEOPLE WHO REPORTED HAVING
SOME TYPE OF DISABILITY HAD MORE
STRESSORS DURING THE COVID-19
PANDEMIC.
YOU KNOW, FROM ECONOMIC TO
HOUSING TO CHILD CARE TO FOOD
INSECURITY, WHICH IS
PARTICULARLY HARD TO SEE, MENTAL
HEALTH, AND PARTNER STRESSORS.
AND THEN, NEXT SLIDE, SO NOT
ONLY DID THEY -- WERE THEY MORE
LIKELY TO REPORT A STRESSOR IN
THESE INDIVIDUAL AREAS, BUT THEY
WERE ALSO MORE LIKELY TO REPORT
HAVING MULTIPLE STRESSORS, SO
THEY -- YOU CAN SEE THEY WERE
MORE LIKELY TO HAVE THREE, FOUR,
FIVE STRESSORS, WHERE THE GROUP
WITHOUT DISABILITY WERE ONLY
REPORTING ZERO TO ONE OR TWO.
SO, WE'RE ALSO LOOKING AT
BREASTFEEDING AND SLEEP
BEHAVIORS, THINGS LIKE THAT.
BUT I FOUND THIS PARTICULARLY
INTERESTING.
AND GIVES US DIRECTIONS ON WHERE
WE MIGHT WANT TO DO FUTURE
RESEARCH, SO THIS IS REALLY
GREAT FOR HYPOTHESIS
DEVELOPMENT.
OKAY.
NEXT SLIDE.
I'M GOING TO PAUSE HERE
ACTUALLY.
SORRY, SHENARD.
DR. BIANCHI, ARE YOU ON?
>> YES, I AM.
>> OKAY.
I'M SORRY.
WE --
>> YES, YOU'RE NOT GOING
ACCORDING TO THE SCHEDULE THAT I
HAVE.
>> WE WERE A LITTLE BIT FAST
THIS MORNING SO I WANT TO BE
RESPECTFUL OF YOUR TIME SO I CAN
PAUSE HERE AND WE CAN DO YOUR
PRESENTATION BECAUSE I KNOW YOUR
SCHEDULE IS MUCH BUSIER.
>> I WAS PLANNING TO HEAR YOUR
PRESENTATION, SO WHY DON'T YOU
FINISH AND THEN I'LL GO AFTER
YOU.
HOW DOES THAT SOUND?
>> IF THAT WORKS FOR YOUR
SCHEDULE WE'LL KEEP GOING.
>> GREAT, THANK YOU.
LET'S ACKNOWLEDGE, BEFORE I
FORGET, THE I.T. SUPPORT IN THE
ROOM WHO IS -- AND IN VIDEOCAST
LAND, WHO ARE MAKING THIS LOOK
SEAMLESS, SO THANK YOU.
OKAY.
LET'S TALK ABOUT SOME SCIENCE.
SO, THE NEXT COUPLE SLIDES, WERE
PUT TOGETHER BY THE BRAIN
INITIATIVE.
YOU KNOW THAT I'VE SPENT A FAIR
AMOUNT OF TIME WORKING WITH THE
BRAIN INITIATIVE INSTITUTES,
LARGELY NINDS, BUT THERE ARE TEN
OF US WORKING ON BRAIN.
THIS PAPER CAME OUT OF MACHADO
AND BAKER LABS LOOKING AT THE
SAFETY AND FEASIBILITY OF DEEP
BRAIN STIMULATION IN TH
CEREBELLUM, COMBINED WITH
TRADITIONAL REHABILITATION TO
IMPROVE UPPER LIMB OUTCOMES
FOLLOWING STROKE.
ALL THE STUDIES I'M GOING TO BE
SHOWING ARE FDA EARLY
FEASIBILITY FIRST-IN-HUMANS.
THE BRAIN INITIATIVE IS REALLY
LOOKING TO UNDERSTAND THE
CIRCUITRY, AND DE-RISK THESE
TYPES OF INTERVENTIONS, SO THAT
INDUSTRY CAN THEN PICK UP AND DO
PIVOTAL TRIALS.
SO I THINK THIS HAS SOME
ANIMATION, SO LET'S SEE WHAT WE
CAN DO HERE.
OKAY.
SO THAT YOU CAN'T SEE IT BUT THE
BIG ORANGE CHUNK IN THE MIDDLE
IS WHEN THEY ARE GETTING THE DBS
WITH REHABILITATION, SO THE
IMPORTANCE OF HAVING
REHABILITATION COMBINED WITH THE
NEUROMODULATION.
THEY HAD 12 SUBJECTS, NINE OF
WHOM HAD SIGNIFICANT
IMPROVEMENTS, AND YOU CAN SEE
THE INDIVIDUAL PATIENT DATA,
WHICH IS SOMETHING THAT I REALLY
LIKE ABOUT HOW THEY PRESENTED
THIS PAPER, WHICH IS IN NATURE
MEDICINE.
YOU CAN SEE NOT EVERYBODY DID
BETTER.
THE MORE IMPAIRED PEOPLE TO
START DID NOT SEE THE SAME GAINS
AS THE MORE MODERATE IMPAIRMENT.
NEXT SLIDE.
AND THEN BECAUSE THIS IS "BRAIN"
THEY WANTED TO SEE IF THEY COULD
UNDERSTAND THE CIRCUITS AND AT
LEAST TO START IT DOES LOOK LIKE
THERE WERE CHANGES IN METABOLIC
ACTIVITY TO GIVE SOME SUGGESTION
OF MECHANISM.
SO, AGAIN, THIS IS A SMALL
NUMBER OF PATIENTS, BUT I THINK
IT GIVES US SOME INTERESTING
NEXT STEPS FOR CEREBELLAR DBS
COMBINED WITH REHAB.
NEXT SLIDE.
HERE WE HAVE ANOTHER EXAMPLE OF
SMALL NUMBER OF SUBJECTS.
HERE WE HAD THREE PEOPLE WITH
POST STROKE PAIN AS WELL AS ONE
PERSON WITH PHANTOM LIMB PAIN,
AND THE INVESTIGATORS HERE OUT
OF UNIVERSITY OF PITTSBURGH I
BELIEVE WERE LOOKING TO SEE IF
THEY COULD FIND SIGNATURES OF
PAIN THAT THEN COULD BE USED IN
A CLOSED LOOP FASHION TO PROVIDE
NEUROSTIMULATION.
SO, IN THIS CASE -- SKIP TO THE
NEXT SLIDE -- THEY ARE
STIMULATING INTERIOR CINGULATE,
ORBITALOFRONTAL CORTEX FOR MANY
MONTHS.
PAIN IS NOT CONSTANT AND YOU
NEED TO SEE OVER TIME, SO
THERE'S AN EXAMPLE OF PAIN
SCORES FROM ONE SUBJECT, AND YOU
CAN JUST SEE THE INCREDIBLE
VARIABILITY AND GREAT THEY WERE
ABLE TO DO LONG-TERM RECORDINGS,
AND THEN IF YOU GO TO THE NEXT
SLIDE, THEY DID FIND VARIABILITY
ACROSS PATIENTS, BUT IT'S HARD
TO SEE IN THE ROOM, BUT IN THE
MIDDLE OF THAT INDIVIDUAL -- THE
FOUR INDIVIDUAL PATIENTS ARE
LISTED WITH THEIR OWN DISTINCT
PAIN FEATURES BUT THEY ALSO
HAVE COMMONALITY.
IN THE RED THEY WERE COMMON TO
ALL.
THE HOPE IS THIS COULD BE USED
AT BIOMARKER FOR CLOSED-LOOP DBS
FOR PAIN MANAGEMENT.
NEXT SLIDE.
OKAY.
AND THEN WE FUND WITH NATIONAL
INSTITUTE ON BIOMEDICAL IMAGING
AND BIOENGINEERING --
>> (INAUDIBLE).
>> THANK YOU.
NIBIB.
WE CO-FUND WITH THEM, THE
RESTORE AND MOBILIZE CENTERS OUT
OF STANFORD, SCOTT IS THE P.I.,
AND THIS IS THEIR RECENT
OPEN-TAP SOFTWARE, WHERE YOU CAN
JUST TAKE A COUPLE CELL PHONES
AND DO MOTION ANALYSIS DATA.
IT'S A LITTLE BIT HARD TO SEE
BUT THERE'S THE PERSON AND THEN
THEIR AVATAR THE SOFTWARE IS
ABLE TO PULL UP NEXT TO IT.
WE DID A PRESS RELEASE WITH OUR
COLLEAGUES FOR THAT.
AND I THINK MY LAST ONE IS AN
NIH RESEARCH MATTERS, A LAY
PUBLICATION WE PUT OUT.
AND HERE WE WERE ONE OF SEVERAL
I.C.s THAT ARE SUPPORTING
RESEARCH TO UNDERSTAND CTE.
I THINK YOU KNOW THAT FOR A LONG
TIME WE DID THE SUPPORT OF THE
TECHNOLOGY TO MEASURE THE HEAD
IMPACTS, SO THE CYMBAX GROUP,
LICENSED TO RIDDELL TO PUT THAT
IN HELMETS, A SUCCESS STORY OF
OUR SMALL BUSINESS PROGRAM BUT
LOOKING AT THE PATTERNS OF WHICH
HITS SEEM TO BE CORRELATED WITH
LATER CTE, AND I WANT TO
ACKNOWLEDGE NINDS, OF COURSE THE
LEAD INSTITUTE ON BRAIN INJURY
AS WELL AS NIA WHO CONTRIBUTED
TO THIS WORK.
SO HOPEFULLY -- THE HOPE IS IF
WE UNDERSTAND BETTER WHICH TYPES
OF HITS ARE CONTRIBUTING TO CTE
THEN WE CAN TRAIN PEOPLE TO NOT
EXPERIENCE AS MANY OF THOSE.
OKAY.
THIS IS MY LAST TOPIC.
AT OUR LAST MEETING WE HAD A
GUEST FROM CENTERS FOR
SCIENTIFIC REVIEW COME AND TALK
TO YOU ALL ABOUT THE CHANGES
THAT WERE BEING PROPOSED TO NIH
REVIEW.
WE CALL IT A SIMPLIFIED
FRAMEWORK.
WE'RE NOT CHANGING REVIEW.
WE'RE SIMPLIFYING THE FRAMEWORK.
AND THAT HAS GONE INTO EFFECT.
SO WE CAME TO YOU AND SAID WE
WERE PLANNING TO DO THIS, NOW WE
HAVE ANNOUNCED THE
IMPLEMENTATION DATE, A YEAR FROM
JANUARY.
SO IF YOU HAVE AN APPLICATION
GOING IN THIS JANUARY, YOU DON'T
HAVE TO WORRY ABOUT IT.
BUT WE LIKE TO GIVE YOU GUYS
TIME TO THINK THROUGH THESE
CHANGES AND MAKE ADJUSTMENTS.
THERE IS NOT ACTUALLY CHANGES TO
THE APPLICATION.
BUT YOU MAY WANT TO THINK ABOUT
HOW YOU'RE GOING TO ADJUST
PERHAPS HOW YOU WRITE AN
APPLICATION BASED ON THE NEW
FRAMEWORK.
SO IF WE CAN GO TO THE NEXT
SLIDE.
SO, MANY OF YOU HERE HAVE
PARTICIPATED IN PEER REVIEW, NOT
WHILE YOU'RE ON THIS BOARD, AND
WE'VE GOTTEN A LOT OF FEEDBACK
THAT WE'RE ASKING PEOPLE TO DO
TOO MUCH THAT DOESN'T FOCUS ON
THE SCIENCE, WHICH IS WHAT YOU
ALL SHOULD BE FOCUSING ON, TOO
MANY ADMINISTRATIVE
POLICY-RELATED THINGS.
AND CSR DID SOME NICE WORK
LOOKING AT WHAT HAPPENS IF WE
GIVE THE SAME APPLICATION BUT
IT'S ANONYMIZED.
AND WHAT THEY FOUND IS THAT FOR
MINORITIZED POPULATIONS IT
DIDN'T CHANGE THEIR SCORE.
BUT FOR WHITE APPLICANTS, THEY
GOT A BOOST IF THEY WERE IN A
MORE PRESTIGIOUS INSTITUTION.
SO, THAT'S NOT GOING TO GET US
THE BEST SCIENCE WHICH IS WHAT
WE NEED SO WE'RE TRYING TO
REDUCE THAT BIAS BY NO LONGER
HAVING THE INVESTIGATOR AND THE
ENVIRONMENT AS SCORED CRITERIA.
SO IF YOU COULD GO TO THE NEXT
SLIDE.
SO, WE STILL HAVE OUR FIVE
REVIEW CITE, LEGISLATED SO THOSE
ARE NOT CHANGING, BUT WE'RE
GROUPING THEM INTO THREE
FACTORS.
AND THEY WILL NOT ALL GET
CRITERIA SCORES LIKE THEY DO
NOW.
INVESTIGATOR AND ENVIRONMENT
WILL ONLY GET ACCEPTABLE OR --
SUFFICIENT OR INSUFFICIENT.
WE'VE ALSO MOVED WHERE SOME
HUMAN SUBJECTS WORK IS GOING TO
BE EVALUATED, SO PREVIOUSLY WE
HAD INCLUSION CRITERIA, STUDY
TIMELINES, AS SEPARATE IN THE
HUMAN SUBJECT SECTION, BUT FELT
THAT WAS MORE ABOUT APPROACH AND
WE REALLY NEEDED TO MOVE THAT
INTO THE APPROACH DISCUSSION.
AND WE PULLED SOME THINGS THAT
REVIEWERS DIDN'T HAVE TO DO
THAT.
THESE WERE THINGS THAT NIH STAFF
COULD REVIEW.
AND, AGAIN, THE HOPE HERE IS
THAT THIS WILL FACILITATE THE
OVERARCHING GOAL OF PEER REVIEW
TO GET THE BEST SCIENCE.
YEAH, MICHELLE?
>> QUICK QUESTION.
WITH ALL THESE CHANGES DOES THAT
MEAN THAT THE AMOUNT OF WORK
THAT GOES INTO DESCRIBING THE
INVESTIGATOR AND THE ENVIRONMENT
HAS DECREASED?
WE STILL HAVE TO DO -- DOES THAT
GO AWAY?
>> SO, NO, THE APPLICATION IS
NOT CHANGING.
BUT WE'RE HOPING THAT THE
APPROPRIATE AMOUNT OF WEIGHT IS
PUT ON THOSE CATEGORIES AS
OPPOSED TO PERHAPS --
>> I THINK THE PLAN WAS TO KEEP
IT FOCUSED ON SIGNIFICANCE AND
POTENTIAL IMPACT AND NOT GET TOO
BOGGED DOWN IN ACADEMIC ELEGANCE
OR APPROACH, ESPECIALLY AS WE
GET INTO THESE TIMES OF
INCREASINGLY STRESSFUL PAYLINES.
THERE'S A TENDENCY OF PEER
REVIEW TO SOMETIMES GET TOO
FOCUSED ON ONCE THEY ALREADY
RATE SOMETHING AS IMPORTANT THEY
GET TOO FOCUSED ON WHETHER IT'S
POSSIBLE TO DO IT, AND
ESPECIALLY FOR APPLICATIONS THAT
ARE PARTICULARLY INNOVATIVE THEY
SUFFER AND WE'RE ALSO TRYING TO
PROMOTE MORE AS THERESA SAID
GEOGRAPHICAL DIVERSITY, MORE
DIVERSITY OF IDEAS, AND ALSO
MORE TRANSPARENCY IN THE REVIEW
PROCESS.
AND SO WE'RE JUST TRYING TO
RESET SOME OF THESE GOALS TO
KEEP -- TO KEEP YOU GUYS, PEER
REVIEWERS, FOCUSED ON THE REAL
GOALS OF PEER REVIEW.
>> THANK YOU, RALPH.
NEXT SLIDE.
SO, WHAT ARE THOSE SPECIFIC
FACTORS?
SO FACTOR ONE IS THE IMPORTANCE
OF THE RESEARCH AND THAT'S WHERE
WE'RE PUTTING SIGNIFICANCE IN
INNOVATION.
SO YOU CAN THINK OF THIS AS
SHOULD IT BE DONE, LIKE IS THIS
IMPORTANT.
FACTOR TWO IS WE'RE LOOKING FOR
RIGOR AND FEASIBILITY SO THIS IS
OUR APPROACH.
AND THIS IS -- YOU KNOW, CAN IT
BE DONE?
AND THEN OUR FINAL FACTOR IS
EXPERTISE AND RESOURCES, WHERE
WE HAVE INVESTIGATOR AND
ENVIRONMENT AND YOU CAN THINK OF
THIS AS WILL IT BE BE DONE, YOU
KNOW, DO THEY HAVE THE EXPERTISE
TO COMPLETE WHAT THEY HAVE
PROPOSED?
AND THE FIRST TWO ARE SCORED AS
YOU'RE USED TO 1-9, AND THAT
THIRD ONE IS EITHER SUFFICIENT
OR INSUFFICIENT.
OKAY.
APPLICATIONS SUBMITTED AFTER
JANUARY 25, 2025.
LAST SLIDE ON THIS.
WE GET TO THE END, YOU THINK YOU
FINISHED DOING YOUR REVIEW AND
YOU REALIZE THERE'S EXTRA
CRITERIA YOU NEED TO LOOK AT, IS
THERE A FOREIGN COMPONENT,
SELECT AGENTS, RESOURCE SHARING
PLANS, WHICH IS DIFFERENT THAN
DATA MANAGEMENT AND SHARING
PLANS.
THESE ARE RESOURCE SHARING
PLANS.
BUDGET, ET CETERA.
SO, WE HAVE PULLED SEVERAL OF
THOSE OFF OF THE REVIEWERS TO
TO-DO LIST SO YOU'LL NO LONGER
NEED TO COMMENT ABOUT, YOU KNOW,
RESOURCE SHARING PLANS AS BEING
SUFFICIENT OR NOT.
EVALUATING WHETHER FOREIGN
COMPONENT IS NECESSARY, ET
CETERA.
SO WITH THAT I WILL PAUSE AND
TAKE QUESTIONS.
>> THANK YOU, THERESA.
VERY, VERY RICH SURVEY OF ALL
THAT'S GOING ON.
QUESTIONS, EITHER ONLINE OR HERE
IN THE ROOM?
MICHELLE?
>> I WAS PARTICULARLY INTERESTED
IN THE WHOLE -- SORRY, I WAS
PARTICULARLY INTERESTED IN THE
WHOLE CEREBRAL VISUAL IMPAIRMENT
IDEA THAT YOU TALKED ABOUT.
SO DOES THAT MEAN WILL THERE BE
AN RFA THAT COMES OUT IN TERMS
OF LOOKING AT THAT AND MAYBE,
YOU KNOW, A CALL FOR PEOPLE TO
ACTIVELY DO MORE IN THAT AREA?
>> YEAH, SO NEI IS DOING A
REGISTRY.
BUT THERE ARE LOTS OF WAYS YOU
CAN DO REGISTRIES.
THEY ARE ACTUALLY GOING TO OWN
THE DATA SO THEY HAVE SOMETHING
CALLED -- I'M LOOKING AT
DOLPHIN.
I-GENE, IS THAT THE CURRENT
REGISTRY?
YES, ALSO A BACKBONE LOOKING AT
GENETIC DISORDERS.
THE INTERNAL GROUP IS FAMILIAR
WITH FITBIR, HOW CAN THEY GET
THE NEW REGISTRY TO WORK WITH
THAT.
>> A FEW OTHER POINTS ABOUT
THAT, IT'S AN EXTENSION FOR US
TO GET INTO SENSORY IMPAIRMENTS
AND HOW THAT RELATES TO PHYSICAL
DISABILITIES, AND IT'S A GREAT
CHANCE TO COLLABORATE WITH NEI
AND OTHER PARTS OF NIH.
THERE'S A LOT OF SIMILARITIES TO
WHAT WE KNOW ABOUT CEREBRAL
PALSY, IT'S AN UMBRELLA OF
CONDITIONS THAT SOMEHOW AFFECT
HOW KIDS USE THEIR EYES, THE
WHOLE SENSORY INPUT.
AND EARLY DIAGNOSIS IS CRITICAL,
TREATMENT, PLASTICITY, SOME
CLASSICAL ISSUES.
THESE KIDS ARE GETTING GROSSLY
UNDERDIAGNOSED.
SO IT WAS A REALLY -- IT HAS
REAL INTEREST TO US AND SOME OF
OUR POPULATIONS, TREMENDOUS
OVERLAP IN SOME PEOPLE WITH
PHYSICAL DISABILITIES ALSO HAVE
THESE SENSORY ISSUES.
AND SO THEY HAVE HAD A LOT OF
RESONANCE FOR WHAT WE'RE TRYING
TO SUPPORT AS WELL.
>> THEY ARE WORKING ON PUTTING
TOGETHER A STEERING COMMITTEE TO
STAND THIS UP, IT'S GLOWING TO
BE MORE DIRECTED FROM NEI ON
THIS.
>> GOING BACK TO NEW SCORING
CRITERIA, THESE ARE EASY TO SAY
IT'S ALL BINARY, BUT --
>> SO, WE HAVE A LOT OF WORK DO
IN 24 TO GET THIS LAUNCHED.
EVERY NOFO HAS TO BE REISSUED,
TO REFLECT THE NEW REVIEW
CRITERIA.
THERE'S TRAINING THAT CSR IS
ROLLING OUT, SO THAT'S WHY WE'D
LIKE TO GIVE OURS SELVES TIME
BECAUSE IT'S GOING TO TAKE A
WHILE TO GET THIS INGRAINED,
YES.
>> YOU THINK IT'S GOING TO BE
VIRTUAL OR AT MEETINGS.
>> I DON'T WANT TO MISSPEAK.
WE CAN HAVE CSR COME BACK IN MAY
IF THAT WOULD BE HELPFUL TO TALK
TO YOU ABOUT HOW THEY ARE
IMPLEMENTING IT, SO KEEP THAT IN
MIND FOR IDEAS FOR THE NEXT
MEETING.
MOST OF OUR TRAINING HAPPENS
BEFORE THE MEETING.
IT'S TOO LATE TO DO TRAINING AT
THE MEETING.
WE KNOW THAT DOESN'T WORK.
SO, YEAH, IT WILL BE BEFORE, I'M
QUITE SURE.
THEY TOOK DOWN A LOT OF TRAINING
VIDEOS FOR THE INFORMATION ABOUT
REVIEW FOR THE PUBLIC WHILE THEY
ARE MAKING THIS CHANGE.
>> THIS IDEA TRYING TO PROMOTE
IMPACT SIGNIFICANCE, TRYING TO
PROMOTE GEOGRAPHIC DIVERSITY,
IT'S GOING TO HAVE IMPLICATIONS
FOR TRAINING AND CAREER
DEVELOPMENT THAT WE SHOULD
REASSESS, TO HAVE A WIDER
DISTRIBUTION HOW WE TRAIN PEOPLE
AND BRING PEOPLE UP BECAUSE IT'S
IMPORTANT WE HAVE THESE THESE
MORE DIVERSE IDEAS, DON'T JUST
HAVE A FEW ELITE, PERHAPS
CONNECTING WITH OUR DISCUSSION
LATER ON ABOUT TRAINING AND
CAREER DEVELOPMENT.
>> I CAN IMAGINE IF THERE'S A
LARGE DISCUSSION AROUND THE
ENVIRONMENT AT STUDY SECTION
THAT'S GOING TO INFLUENCE SCORES
SO DOES THAT MEAN BECAUSE
ENVIRONMENT IS YES OR NO, DOES
THAT MEAN THE DISCUSSION AROUND
THE RESOURCES AND CAPABILITY,
ALL THAT STUFF ACTUALLY
DECREASED?
>> IT STILL COMES UP, THEY HAVE
TO ACCESS PATIENT POPULATIONS
AND COME ACROSS THAT BUT NOT
AUTOMATICALLY GIVE A PASS FOR
LEAD INSTITUTIONS AND PICK ON
PLACES NOT QUITE THE TOP BECAUSE
WE JUST DON'T KNOW THEM.
>> OTHER QUESTIONS?
>> WE'LL CONTINUE DURING THE
DAY.
WE CAN GET MORE DISCUSSION ON
ALL THESE TOPICS.
BUT I'D LIKE TO GO AHEAD AND
MOVE ON TO DR. DIANA BIANCHI'S
PRESENTATION.
SHE'S DIRECTOR OF NICHD AND SHE
WILL GIVE HER REPORT TO THE
BOARD AND I ASSUME THAT THE
SLIDES WILL APPEAR.
>> THANK YOU.
YOU'RE AMAZING.
I'M ASSUMING SHENNARD HAS THE
SLIDES.
GREAT.
THANK YOU FOR ACCOMMODATING MY
SCHEDULE.
I'M ACTUALLY TRIPLE SCHEDULED,
JUMPING BACK AND FORTH BETWEEN
MEETINGS, IT'S A VERY BUSY TIME.
I REMEMBER FONDLY WHEN THINGS
STARTED TO SLOW DOWN DURING THE
HOLIDAYS.
THAT DOESN'T HAPPEN ANYMORE.
NEXT SLIDE PLEASE.
TODAY I'M GOING TO TALK ABOUT
THE NEW DIRECTOR, THERESA MAY
HAVE SOMETHING SAID EARLIER,
WE'LL TALK ABOUT THE BUDGET NOT
THAT THERE'S VERY MUCH TO SAY.
I'M GOING TO GIVE A PREVIEW OF
THE ADVISORY COMMITTEE TO THE
NIH DIRECTOR'S WORKING GROUP ON
DIVERSITY SUBGROUP ON
INDIVIDUALS WITH DISABILITIES,
AND THEN ALLISON IS GOING TO
SPEAK ABOUT THAT LATER ON IN THE
AFTERNOON IN MORE DETAIL.
TO GIVE A PREVIEW TO WHAT'S
GOING ON WITH NICHD STRATEGIC
PLAN PLANNING FOR THE NEXT YEAR,
AND I KNOW THERESA TALKED A LOT
ABOUT COLLABORATIONS, I'M GOING
TO TALK ABOUT OUTSIDE OF NIH,
IMPORTANT EXTRAMURAL
PARTNERSHIPS THAT REPRESENT AN
OPPORTUNITY FOR NEW PERSPECTIVES
AND ADDITIONAL FUNDING.
AND THEN I'LL FILL IN SOME OTHER
NIH LEADERSHIP UPDATES AND
HOPEFULLY LEAVE TIME FOR
QUESTIONS.
SO NEXT SLIDE PLEASE.
NEXT SLIDE.
SO, DR. MONICA BERTAGNOLLI IS
NOW IN THE HOUSE, SO TO SPEAK.
SHE IS THE 17th DIRECTOR OF
NIH AND THE SECOND FEMALE
DIRECTOR.
SHE WAS SWORN IN ON NOVEMBER 9,
AS SHE HAS SAID MULTIPLE TIMES
IN THE AMERICAN AIRLINES LOUNGE
AT REAGAN NATIONAL AIRPORT.
YOU NEVER KNOW WHEN THE
PRESIDENT IS GOING TO SIGN THE
APPOINTMENT AND AS SOON AS HE
SIGNED IT, SHE WAS SWORN IN.
YOU MAY HAVE READ IN THE NEWS
ABOUT THE PROLONGED CONFIRMATION
PROCESS WHICH WAS HELD UP BY
CONCERNS FROM SENATOR SANDERS
ABOUT DRUG PRICES, NOT THAT NIH
HAS A LOT TO DO WITH DRUG
PRICES, BUT THERE WAS A VERY
PROLONGED CONFIRMATION PROCESS.
THAT BEING SAID, THE ULTIMATE
VOTE IN THE SENATE WAS
SIGNIFICANTLY BIPARTISAN, SO WE
SHOULD CELEBRATE THAT.
FOR THOSE WHO DON'T KNOW HER,
SHE'S A SURGEON ONCOLOGIST WHO
SERVED AS THE DIRECTOR OF THE
NCI.
SHE'S BEEN AT NIH FOR ABOUT A
YEAR FOLLOWING MULTIPLE
LEADERSHIP POSITIONS IN THE
ONCOLOGY COMMUNITY.
AND SO IT'S GREAT, BECAUSE WE DO
KNOW HER.
WE HAVE BEEN WORKING WITH HER
FOR THE PAST YEAR, BUT I'LL ALSO
SAY THAT SHE HAS SOME NEW IDEAS
AND IS A DEFINITE BREATH OF
FRESH AIR SO IT'S VERY EXCITING
TO WORK WITH HER AS SHE BEGINS
TO ROLL OUT HER VISION.
NEXT SLIDE.
WELL, I WISH I COULD SAY MORE
ABOUT THE BUDGET.
WE HAVE PREPARED TWICE FOR
POTENTIAL GOVERNMENT SHUTDOWNS,
SINCE OCTOBER 1.
AND NOW WE ESSENTIALLY HAVE A
STAY OF EXECUTION UNTIL FEBRUARY
2.
YOU KNOW, I WISH I COULD TELL
YOU MORE.
NOBODY SEEMS TO KNOW WHAT'S
GOING TO HAPPEN.
I GATHER THAT NOBODY REALLY
WANTS A GOVERNMENT SHUTDOWN IN
AN ELECTION YEAR BUT THE
IMPORTANT THING IS A CONTINUING
RESOLUTION WITH A FLAT BUDGET IS
PROBABLY OUR BEST CASE SCENARIO,
AS YOU PROBABLY ARE AWARE THERE
ARE CERTAIN MEMBERS OF CONGRESS
WHO REALLY WANT A SIGNIFICANT
SLASH IN FUNDING, AND THAT WOULD
HAVE SIGNIFICANT IMPLICATIONS
FOR WHAT WE CAN DO.
SO, WE'RE CURRENTLY OPERATING
UNDER A CONTINUING RESOLUTION,
WHICH IS A FLAT BUDGET,
ESSENTIALLY ROLLING OUT WHAT WE
HAD LAST YEAR.
SO, IT'S STILL BUSINESS AS
USUAL, WE'RE TENDING TO BE
CONSERVATIVE IN TERMS OF FUND
GRANT APPLICATIONS AT A LOW
PAYLINE PERCENTAGE BECAUSE WE
DON'T KNOW WHAT'S GOING TO
HAPPEN.
BUT, YOU KNOW, NO ONE WOULD EVER
RUN A BUSINESS LIKE THIS, LET ME
TELL YOU THAT.
I MEAN, IT'S QUITE POSSIBLE THAT
ONCE WE HAVE A PERMANENT BUDGET
FOR FISCAL YEAR 24, WHICH IS
LIKELY TO BE HALFWAY THROUGH THE
FISCAL YEAR, WE WILL GO BACK AND
START FUNDING APPLICATIONS THAT
WOULD BE IN OUR USUAL PAYLINE.
SO, PUTS A LOT OF STRESS ON OUR
STAFF AS WELL AS THE
INVESTIGATORS WHO DON'T KNOW
WHAT'S GOING ON, PERHAPS
REAPPLYING.
I DON'T KNOW WHAT TO SAY.
WE'RE KIND OF AT THE MERCY OF
CONGRESS.
NEXT SLIDE.
PART OF OUR JOBS ARE TO MEET
WITH REPRESENTATIVES IN
CONGRESS, AND INDICATE TO THEM
WHAT WE'RE DOING, GET TO KNOW
THEM, HOPEFULLY DEVELOP
RELATIONSHIPS SO THAT THEY CAN
CHAMPION FOR OUR INTERESTS, SO
IN THE FALL I MET WITH
REPRESENTATIVE KARAVEYO FROM
NORTHERN COLORADO, A
PEDIATRICIAN, WAS IN PRIMARY
CARE AND INTERESTED IN A NUMBER
OF OUR ACTIVITIES THAT AFFECTED
HER PRACTICE.
MORE RECENTLY I MET WITH SENATOR
JOHN BOOZMAN OF ARKANSAS, VERY
CONCERNED ABOUT THE INCREASE IN
MATERNAL MORTALITY AND IN
PARTICULAR HIS STATE'S
DIFFICULTIES AND CHALLENGES WITH
TAKING CARE OF PREGNANT PEOPLE.
ONE OF THE THINGS WE DISCUSSED
THAT I HADN'T THOUGHT ABOUT, WE
WERE VERY AWARE OF MATERNITY
CARE DESERTS AND DIFFICULTY
GETTING OBSTETRIC CARE FOR TWO
MILLION PREGNANT PEOPLE A YEAR,
BUT HE MENTIONED AMBULANCES,
THAT THAT'S A REAL ISSUE IN
RURAL AREAS OF ARKANSAS THAT THE
AMBULANCE COMPANIES DON'T WANT
TO TRAVEL TWO HOURS FOR A
PATIENT WHO IS ON MEDICAID, FOR
EXAMPLE, SO THAT'S SORT OF
ANOTHER AREA THAT WE HAVE TO
THINK ABOUT BECAUSE WE HAD --
WE'RE CERTAINLY WORKING ON
TECHNOLOGY THAT WILL RECOGNIZE
COMPLICATIONS OF PREGNANCY BUT
THAT'S NOT GOING TO DO VERY MUCH
IF YOU'RE LIVING TWO HOURS FROM
A HOSPITAL AND YOU CAN'T GET TO
THE HOSPITAL.
SO, THESE MEETINGS ARE VERY
IMPORTANT BILATERALLY BECAUSE WE
CAN SHARE WITH THEM WHAT WE AND
NIH OVERALL ARE DOING, WE CAN
HEAR FROM THEM WHAT SOME
CHALLENGES ARE.
NEXT SLIDE PLEASE.
NEXT SLIDE.
SO, I THINK YOU'RE ALL AWARE OF
THIS ACD WORKING GROUP, THE
DIVERSITY SUBGROUP ON
INDIVIDUALS WITH DISABILITIES.
AND IN THEIR REPORT, THEY
RECOMMENDED THAT ONE IMMEDIATE
IMMEDIATE ACTION TO SUPPORT
DISABILITY INCLUSION IS REMOVE
LANGUAGE OF REMOVING DISABILITY
FROM OVERALL NIH MISSION
STATEMENT.
THE CURRENT MISSION STATE COULD
BE TERMED AS PERPETUATING
ABLEIST BELIEFS, THAT DISABLED
PEOPLE ARE FLAWED AND NEED TO BE
"FIXED."
THAT LED TO INITIATIVE TO UPDATE
THE OVERALL NIH MISSION
STATEMENT.
THE CURRENT ONE IS, A QUOTE, TO
SEEK FUNDAMENTAL KNOWLEDGE ABOUT
THE NATURE AND BEHAVIOR OF
LIVING SYSTEMS.
AND THE APPLICATION OF THAT
KNOWLEDGE TO ENHANCE HEALTH,
LENGTHEN LIFE, REDUCE ILLNESS
AND DISABILITY.
THE PROPOSED MISSION STATEMENT
WHICH MIGHT SOUND FAMILIAR TO
YOU BECAUSE IT TOOK KIND OF A
TONE FROM THE NICHD'S MISSION
STATEMENT, WHICH EMPHASIZES
OVERALL ABILITIES, THE PROPOSED
MISSION STATEMENT IS TO SEEK
FUNDAMENTAL KNOWLEDGE ABOUT
NATURE AND BY HEIFER OF LIVING
SIS TOM AND APPLY TO PREVENT OR
REDUCE FOR ALL PEOPLE.
THERE WAS AN OPPORTUNITY TO
RESPOND VIA PUBLIC REQUEST FOR
INFORMATION, HOPEFULLY MANY OF
YOU DID RESPOND.
THE RESPONSES WERE DUE NOVEMBER
24.
OUR MISSION STATE IS OPTIMIZE
ABILITIES FOR ALL, THE WORD
"OPTIMIZE" WAS AN IMPORTANT
ADDITION FROM THOSE WHO
PARTICIPATED.
THE 2023 NIH DIRECTOR'S AWARD
WAS GIVEN TO THE ACD WORKING
GROUP ON DIVERSITY SUBGROUP ON
INDIVIDUALS WITH DISABILITIES,
AND THE CITATION WAS FOR
LEADERSHIP OF COMPREHENSIVE
STRATEGY DOCUMENT THAT ADVANCES
THE INCLUSION OF INDIVIDUALS
WITH DISABILITIES IN THE
SCIENTIFIC WORKFORCE.
AND I WOULD LIKE TO ACKNOWLEDGE
THERESA'S MAJOR CONTRIBUTIONS AS
WELL AS KATHY MANN KOEPKE WHO
WORKED EXTENSIVELY WITHIN THIS
WORKING GROUP.
SO, YOU KNOW, AS REPRESENTATIVES
OF NICHD, AS WELL AS NCMRR, OUR
VOICES WERE HEARD SO I WOULD
LIKE TO ACKNOWLEDGE THEIR GREAT
WORK AND THANK THEM FOR THEIR
EFFORTS.
NEXT SLIDE PLEASE.
A MAJOR THING HAPPENED IN
OCTOBER OF 2023.
THE NIH DESIGNATED PEOPLE WITH
DISABILITIES AS A HEALTH
DISPARITY POPULATION.
THIS SUPPORTS NICHD'S MISSION
AREA OF INCLUDING PEOPLE WITH
DISABILITIES IN RESEARCH AND
WILL PROVIDE NEW FUNDING
OPPORTUNITIES.
SO RIGHT NOW THERE'S A NEW
OPPORTUNITY FOR INNOVATIVE
APPROACHES AND INTERVENTIONS
THAT ADDRESS THE INTERSECTING
IMPACT OF DISABILITY, RACE,
ETHNICITY, AS WELL AS
SOCIOECONOMIC STATUS ON
HEALTHCARE ACCESS AND HEALTH
OUTCOMES.
SO, I'LL JUST GIVE YOU A MOMENT
TO WRITE THAT DOWN, ALTHOUGH I
BELIEVE YOU HAVE COPIES OF THE
SLIDES, BUT THAT IS AN
OPPORTUNITY THAT MAY BE
IMPORTANT FOR MANY OF YOU AND
PEOPLE WORKING WITHIN YOUR
GROUPS.
NEXT SLIDE.
OKAY.
SO, WE'RE STARTING TO THINK
ABOUT OUR NEXT STRATEGIC PLAN,
SO OUR PREVIOUS STRATEGIC PLAN
WAS IN 2019.
IT WAS ESSENTIALLY THE 2020
STRATEGIC PLAN.
I WANT TO THANK PEOPLE WHO HAD
INPUT INTO THAT BY VIRTUE OF THE
AUTHORIZATION LANGUAGE IN THE
21ST CENTURY CURES ACT, EACH NIH
INSTITUTE AND CENTER HAS TO
REFRESH THEIR STRATEGIC PLAN
EVERY FIVE YEARS.
NOW, BACK IN 2019 WE HAD NOT HAD
A STRATEGIC PLAN FOR 20 YEARS.
SO WE HAD TO DO SOME HEAVY
LIFTING TO ESSENTIALLY CREATE A
MODERN STRATEGIC PLAN.
SO THAT PLAN NOT ONLY COVERED
AREAS OF SCIENTIFIC RESEARCH
FOCUS BUT ALSO LOOKED AT THE
ORGANIZATION AND THE INSTITUTE
WITH REGARD TO STEWARDSHIP,
MANAGEMENT, ACCOUNTABILITY.
AND WE'VE BEEN TRACKING AND
DOCUMENTING ACTIVITIES AND
ACHIEVEMENTS TOWARDS THE
OBJECTIVES LISTED IN THAT
STRATEGIC PLAN.
I'M GOING TO SHOW YOU SOME OF
THE PROGRESS THAT WE'VE MADE.
OVER THE NEXT YEAR, NOW THE
CALENDAR YEAR, WE'RE GOING TO
REFRESH THE STRATEGIC PLAN.
WE ARE LOOKING BACK TO SEE WHAT
DID WE ACCOMPLISH, WHERE THE
GAPS, WHAT COULD WE DO BETTER,
WHAT PROGRAMS COULD BE
SUNSETTED, AND FIRST START WITH
OUR INTERNAL STAFF TO SUGGEST
NEW AREAS OF SCIENTIFIC FOCUS,
NEW OPPORTUNITIES, AND THEN BE
ON THE LOOKOUT FOR OPPORTUNITIES
TO PROVIDE EXTERNAL FEEDBACK AND
OF COURSE YOU'RE WELCOME TO DO
THAT WITHIN THE CONTEXT OF THIS
MEETING AS WELL.
BUT WE WILL BE HAVING A REQUEST
FOR INFORMATION FROM BOTH THE
SCIENTIFIC COMMUNITIES AS WELL
AS THE ADVOCACY COMMUNITIES, AND
PEOPLE WITH LIVED EXPERIENCE.
I'M GOING TO START WITH PROGRESS
NOW TOWARDS SOME ASPIRATIONAL
GOALS.
AT THE BACK OF THE STRATEGIC
PLAN, YOU CAN FIND IT JUST
GOOGLE NICHD STRATEGIC PLAN, IT
COMES RIGHT UP.
IN THE BACK OF IT, THERE WERE
TEN ASPIRATIONAL GOALS.
NEXT SLIDE PLEASE.
I'M NOT GOING THROUGH ALL OF
THEM, JUST GOING TO PICK SOME OF
THEM.
I PICKED THREE THAT ARE MOST
RELEVANT TO NCMRR.
SO ONE IS THE TO ADVANCE THE
ABILITY TO REGENERATE HUMAN
LIMBS BY USING EMERGING
TECHNOLOGIES TO ACTIVATE THE
BODY'S OWN GROWTH PATHWAYS AND
PROCESSES.
THE NEXT ONE WHICH IS
PARTICULARLY RELEVANT TO WHAT
THERESA WAS TALKING ABOUT WITH
THE VISUAL IMPAIRMENT
EXPERIENCED BY PRE-TERM BABIES,
IS TO ENHANCE THE SURVIVAL AND
HEALTHY DEVELOPMENT OF PRE-TERM
INFANTS BY EXPLORING THE ROLE OF
ENVIRONMENTAL FACTORS.
AND THE THIRD IS TO FACILITATE
THE APPLICATION OF PRECISION
MEDICINE APPROACHES IN CHILDREN
BY CAPITALIZING ON ADVANCES IN
GENOMICS AND UPDATING NORMATIVE
DATA ON GROWTH OF DIVERSE
POPULATION INCLUDING THOSE WITH
INTELLECTUAL, DEVELOPMENTAL,
PHYSICAL DISABILITIES.
LIVER GENERATION NEEDS TO GO
FIRST, PROBABLY OF MOST -- LIMB
REGENERATION GOES FIRST,
PROBABLY OF MOST INTEREST TO
YOU.
YOU CAN SEE TRENDS IN FUNDING.
ON THE LEFT IS SOME BASELINE
INFORMATION, THERE ARE
2.1 MILLION PEOPLE IN THE UNITED
STATES WHO HAVE LIMB LOSS, AND
WE WERE HEARING WITH THE
UNDERGRADUATE CHALLENGE AND
PEOPLE EXPERIENCE PAIN,
LONG-TERM DISABILITY, AND THERE
ARE SIGNIFICANT LIFETIME MEDICAL
COSTS AFTER LIMB AMPUTATION.
SO, I MEAN, IT'S GOOD NEWS,
THERE HAS BEEN AN UPWARD TREND
IN FUNDING IN THIS AREA.
AND THERE HAS BEEN SOME PROGRESS
IN TERMS OF THE RESEARCH.
SO, SOME VERY EXCITING WORK HAS
BEEN DONE IN PRE-CLINICAL AREAS,
SO IN SALAMANDERS, THE PATTERNS
OF GENE EXPRESSION ARE SIMILAR
BETWEEN DEVELOPING AND
REGENERATING LIMBS.
ALSO A GROUP HAS BUILT A KEY
MECHANISM BEHIND STEP IN ACTIVE
INHIBITION OF PROTEIN SYNTHESIS
DURING BLASTEMA FORMATION AND
GROWTH.
NEXT SLIDE PLEASE.
IN TERMS OF SURVIVAL AND HEALTH
OF PRE-TERM INFANTS, NO MAJOR
MAGIC BULLETS HERE.
UNFORTUNATELY THE BASELINE RATE
OF PREMATURITY IS IF ANYTHING
UPWARDS, APPROXIMATELY 9% OF
BABIES ARE ADMITTED TO NEONATAL
INTENSIVE CARE UNITS AT LEAST
DATA AS OF 2021.
FUNDING IS ESSENTIALLY FLAT,
MAYBE SLIGHTLY DOWN.
WE'RE CONTINUING TO FUND OUR
NEONATAL RESEARCH NETWORK AND
MATERNAL-FETAL NETWORK.
WE HAVE FUNDED RESEARCH THAT HAS
RESULTED IN SOME IMPORTANT
FINDINGS.
FOR EXAMPLE, BABIES THAT ARE FED
FORTIFIED HUMAN MILK HAVE
DIFFERENT GROWTH PATTERNS, ARE
DOING MUCH BETTER IN TERMS OF
GROWTH THAN UNFORTIFIED HUMAN
MILK, BABIES WHO RECEIVE
UNFORTIFIED HUMAN MILK.
ALSO PRE-TERM INFANTS EXPOSED TO
MORE SPEECH IN THE NICU GAINED
MORE WEIGHT, AND STEROID
TREATMENT TO THE MOTHER
OBVIOUSLY BEFORE BIRTH HELPS TO
IMPROVE SURVIVAL AND REDUCE
COMPLICATIONS AMONG EXTREMELY
PRE-TERM INFANTS.
SO THAT'S SOMETHING THAT WE'VE
KNOWN EVER SINCE I WAS IN
PRACTICE IN NEONATOLOGY, BUT
IT'S GETTING A LITTLE BIT MORE
REFINED IN TERMS OF THE DATA.
SO WHILE THE OVERALL FUNDING
HASN'T INCREASED, WE ARE
CONTINUING TO MAKE PROGRESS IN
THE CARE AND DEVELOPMENT OF
PRE-TERM INFANTS.
NEXT SLIDE PLEASE.
LASTLY, PRECISION PEDIATRICS IS
IMPORTANT BECAUSE OF THE
CHILDREN THAT WE SEE WHO HAVE
INTELLECTUAL DISABILITIES OR WHO
HAVE HEARING OR VISION
DISORDERS, USING DATA FROM THE
U.K. BIOBANK, 100,000 GENOMES
PROJECT, 44 TO 50% WERE ABLE TO
IDENTIFY AT LEAST A SINGLE GENE
EXPLANATION FOR THE
DISABILITIES.
AGAIN, FUNDING IS RELATIVELY
FLAT, INCLUDES A NUMBER OF
DIFFERENT AREAS OF SUPPORT FROM
NICHD.
AND THIS IS AN AREA THAT IS
MOVING ALONG QUITE QUICKLY.
THERE ARE A LOT OF COMPUTER
ALGORITHMS THAT ARE BEING
DEVELOPED.
IN THE INTERVAL SINCE THE
STRATEGIC PLAN, DNA SEQUENCE
ANALYSIS OF BABIES IN THE NICU
HAS BECOME INCORPORATED INTO
ROUTINE CARE.
GENETIC TESTING OF SIBLINGS OF
NEWBORNS WITH CANCER GENES COULD
REDUCE PEDIATRIC CANCER DEATHS
BY DEMONSTRATING WHO IS AT RISK,
WHO IS NOT AT RISK.
ALSO GWAS STUDIES ARE SUGGESTING
WAYS THAT DIFFERENT BABIES AND
CHILDREN ARE METABOLIZING DRUGS,
PARTICULARLY IF THEY HAVE BEEN
EXPOSED IN THE WOMB.
NEXT SLIDE PLEASE.
SO, I'D LIKE TO TALK ABOUT
PARTNERSHIPS.
SO, FIRST OF ALL NICHD AS AN
INSTITUTE WAS AWARDED THE 2023
CHARLES SANDERS M.D. PARTNERSHIP
AWARD FROM THE FOUNDATION FOR
NIH.
THIS IS RECOGNIZING SIGNIFICANT
CONTRIBUTIONS TO FNIH IN SUPPORT
OF MISSION OF NIH, THIS IS AN
EXTREMELY PRESTIGIOUS AWARD
GIVEN TO THE ENTIRE INSTITUTE.
REALLY WAS FOCUSING ON TWO
MATERNAL HEALTH CLINICAL TRIALS,
ONE OF WHICH IS COMPLETE, THE
A-PLUS STUDY SHOWED A SINGLE
DOSE OF THE LOW COST ORAL BD2K
AZITHROMYCIN IF GIVEN IN LABOR
RETUESDAY MATERNAL SEPSIS AND
DEATH BY ONE-THIRD, A
PARTNERSHIP BETWEEN THE BILL AND
MELINDA GATES FOUNDATION AND
NICHD'S GLOBAL NETWORK FOR WOMEN
AND CHILDREN'S HEALTH RESEARCH.
THIS WORK WAS DONE AT EIGHT
SITES, SEVEN LOW- AND
MIDDLE-INCOME COUNTRIES.
THERE ARE SECONDARY ANALYSES AND
SUBSTUDIES.
THAT'S ONE OF THE OTHER MEETINGS
GOING ON TODAY THAT I'M JUMPING
BACK AND FORTH FROM BECAUSE THEY
ARE SHOWING VERY INTERESTING
THINGS WITH THE SECONDARY
ANALYSIS.
ONGOING IS THE PRIORITY TRIAL
WHICH IS LOOKING AT GIVING
INTRAVENOUS POSTPARTUM IRON TO
TREAT ANEMIA IN POSTPARTUM WOMEN
BEFORE THEY CONCEIVE AGAIN TO
TRY TO REDUCE MORBIDITY.
NEXT SLIDE PLEASE.
WE'RE CONTINUING OUR PARTNERSHIP
WITH THE FOUNDATION FOR NIH.
THEY SERVE AS A THIRD PARTY
BROKER, WHICH ALLOWS A
PUBLIC/PRIVATE PARTNERSHIP, SO
THE GATES FOUNDATION CAN GIVE
THE MONEY TO FNIH AND WE CANNOT
DIRECTLY ACCEPT FUNDING FROM
FOUNDATIONS OR INDUSTRY BUT IT
CAN GO TO FNIH IN PARTNERSHIP
WITH NIH.
SO WE HAVE A BIG PROGRAM GOING
ON IN PEDIATRIC MEDICAL DEVICE
DEVELOPMENT.
THIS IS DEFINITELY RELEVANT TO
NCMRR.
AND ANOTHER PROGRAM THAT IS
LOOKING AT BIOMARKERS FOR RISK
STRATIFICATION AND DETECTION OF
EARLY ONSET PREECLAMPSIA.
AND WE ARE EXPLORING ADDITIONAL
OPPORTUNITIES THAT RELATE TO
MATERNAL AND CHILD HEALTH.
THEIR NEW C.E.O. WAS FORMERLY
THE DIRECTOR OF THE CDC, AND
THEN SPENT SOME TIME AT MERCK,
AND SHE HAS A DEFINITE PRIORITY
FOR MATERNAL/CHILD HEALTH,
THAT'S GOING TO BODY WELL FOR US
IN THE FUTURE.
NEXT SLIDE.
I ALREADY MENTIONED THE BILL AND
MELINDA GATES FOUNDATION.
WE HAVE AN ONGOING
COLLABORATION, NIH OVERALL DOES,
BUT WE PRIMARILY WORK WITH THEM
ON THE MATERNAL NEONATAL AND
CHILD WORKING GROUP WITH THREE
SUBGROUPS RELATED TO PREGNANCY
OUTCOMES, NEURODEVELOPMENT AND
GROWTH & NUTRITION.
I WON'T GO THROUGH A LOT OF TIME
ON -- WELL, WE'RE GOING TO CATCH
UP BECAUSE YOU WERE RUNNING A
LITTLE EARLY, SO I ALREADY
MENTIONED THIS AZITHROMYCIN,
THE A-PLUS AND PRIORITY TRIAL
ALSO CAN THE BILL AND MELINDA
GATES FOUNDATION LOOKING AT
OPPORTUNITIES TO STUDY
THERAPEUTICS IN PREGNANT PEOPLE
AND CHILDREN.
THE GATES FOUNDATION HAS A
VIRTUAL PREGNANCY EFFORT, AND
WE'RE WORKING TOGETHER WITH THEM
TO UNDERSTAND PHARMACOKINETIC
MODELING OF CERTAIN DRUGS.
WE'RE ALSO COLLABORATING ON
ELECTRO MYOMETRIAL IMAGING TO
LOOK FOR WHO IS HAVING PREMATURE
CONTRACTIONS, TO IDENTIFY WOMEN
WITH MILD BRAXTON HICKS VERSUS
THOSE WHO WILL GO ON TO DELIVER
PREMATURELY.
AND WE HAVE COLLABORATED ON
VARIOUS PROJECTS RELATED TO
COVID-19 ANTIBODY TESTING AND
VACCINE HESITANCY.
NEXT SLIDE PLEASE.
IN THE NEURODEVELOPMENT
SUBGROUP, THE MAIN THING IS THAT
WE'RE COLLABORATING ON AN EFFORT
TO USE THE HYPERFINE MACHINE, A
PORTABLE MRI SYSTEM.
THEY CAN LITERALLY PUT THIS IN A
VAN, DRIVE IT AROUND IN BOTH OF
THE U.S. AND ALSO IN LOW- AND
MIDDLE-INCOME COUNTRIES.
WE HAVE ONE OF THESE MACHINES
HERE ON CAMPUS AT THE NIH.
AND ONE OF OUR INTRAMURAL
INVESTIGATORS IS TESTING NOVEL
BIOMARKERS THAT COULD BE
SUITABLE FOR IMAGING
APPLICATIONS.
AND THEN LASTLY THE HEALTHY
BRAIN CHILD AND DEVELOPMENT
STUDY, HBCD, FOCUSING ON
PREGNANT INDIVIDUALS ACROSS THE
U.S. WHO ARE USING OPIOIDS AND
LOOKING AT THEIR EFFECTS ON
BRAIN DEVELOPMENT.
NEXT SLIDE PLEASE.
LASTLY, GROWTH AND NUTRITION HAS
A NUMBER OF THINGS GOING ON WITH
THE GATES FOUNDATION FOCUSING ON
HUMAN MILK.
THE NATURE AND FUNCTION OF
NUTRIOME, BIOMARKERS OF
DEVELOPMENT AND KNOWLEDGE
INDICATING DIETARY SUFFICIENCY,
CLIMATE CHANGE ANEMIA ECOLOGY.
NEXT SLIDE PLEASE.
LASTLY, WE HAD A MEETING WITH
THE PRESIDENT AND CEO OF INSERM,
THE FRENCH EQUIVALENT OF NIH.
WE HAVE PREVIOUSLY FUNDED AN
EXCHANGE PROGRAM FOR FELLOWS TO
EITHER GO THERE OR HAVE FRENCH
FELLOWS COME TO US.
THE FELLOW WHO CAME FROM FRANCE,
EXTREMELY PRODUCTIVE FOR HER.
SHE WAS HERE FOR SEVERAL YEARS
AND CO-AUTHORED OR
FIRST-AUTHORED 28 PUBLICATIONS
WHICH ALLOWED HER TO RETURN TO
FRANCE WITH A VERY PRESTIGIOUS
FACULTY APPOINTMENT.
IN LISTENING TO PRESENTATION ON
THEIR PRIORITIES WE HAVE
MULTIPLE AREAS OF OVERLAP BUT
TWO BIGGEST ONES INCLUDE
INFERTILITY AND ENDOMETRIOSIS,
THEY ALSO HAVE NATIONAL COHORT
STUDY OF 100,000 FAMILIES
CHARACTERIZING EFFECTS OF THE
EXPOSOME ON CHILD HEALTH.
THE LAST PART ARE NEW LEADERS AT
NIH, IN CASE YOU HAVEN'T BEEN
KEEPING UP WITH THE NEWS.
TONY FAUCI RETIRED A YEAR AGO.
AND THE SEARCH WAS HELD.
AND THE NEW DIRECTOR OF THE
NATIONAL INSTITUTE OF ALLERGY
AND INFECTIOUS DISEASE IS DR.
JEANNE MARRAZZO, WHO WAS
FORMERLY DIRECTOR OF THE
DIVISION OF INFECTIOUS DISEASES
AT THE UNIVERSITY OF ALABAMA
BIRMINGHAM.
NOW, WHAT'S EXCITING ABOUT THAT
FOR US IS HER INTERESTS HAVE
RELATED TO FEMALE REPRODUCTIVE
TRACT INFECTIONS AND HORMONAL
CONTRACEPTION SO THERE ARE GOING
TO BE NEW AREAS FOR
COLLABORATION WE HAVEN'T HAD
PREVIOUSLY.
WE HAVE A BIG PORTFOLIO IN
PREVENTION AND TREATMENT OF HIV
INFECTION.
THIS IS AN AREA OF EXPERTISE FOR
HER.
SHE'S ALSO INTERESTED IN
BACTERIAL VAGINOSIS, SO WE
ANTICIPATE MULTIPLE
COLLABORATIONS WITH NIAID.
SHE GRADUATED FROM HARVARD,
JEFFERSON, HAS A MASTER'S IN
PUBLIC HEALTH, EPIDEMIOLOGY,
PREVIOUSLY AT THE UNIVERSITY OF
WASHINGTON BEFORE UNIVERSITY OF
ALABAMA.
SHE'S A DELIGHTFUL PERSON AND WE
REALLY LOOK FORWARD TO WORKING
WITH HER.
NEXT SLIDE PLEASE.
AND THEN TWO PEOPLE THAT I HAVE
YET TO MEET BUT ARE ON MY
CALENDAR, THE NIH ASSOCIATE
DIRECTOR FOR BEHAVIORAL AND
SOCIAL SCIENCES RESEARCH DR.
JANE SIMONI FORMERLY FROM
UNIVERSITY OF WASHINGTON ALSO
HAS PREVIOUS EXPERIENCE IN HIV
AND AIDS RESEARCH.
INTERESTINGLY, DR. KARINA
WALTERS, DIRECTOR OF TRIBAL
HEALTH RESEARCH, ALSO FROM
UNIVERSITY OF WASHINGTON, BOTH
WERE PROFESSORS THERE AND DR.
WALTERS IS THE FORMER ASSOCIATE
DEAN FOR RESEARCH AT THE
UNIVERSITY OF WASHINGTON SCHOOL
OF SOCIAL WORK, WITH HER
TRAINING AT UCLA.
SO, AGAIN, NEW OPPORTUNITIES TO
COLLABORATE.
TRIBAL HEALTH IS AN AREA WHERE
WE HAVEN'T HAD A MAJOR
INVESTMENT BUT CLEARLY WITH THE
HEALTH DISPARITIES IN PREGNANCY,
CHILD HEALTH, INFANT AND
MATERNAL MORTALITY AS WELL AS
DISABILITIES, THIS IS AN AREA IN
WHICH WE NEED TO DO MORE SO I
LOOK FORWARD TO MEETING WITH DR.
WALTERS.
NEXT SLIDE PLEASE.
AND LASTLY, WE SADLY ANNOUNCED
RETIREMENT OF PATTI BRENNAN, WHO
WAS DIRECTOR OF NATIONAL LIBRARY
OF MEDICINE FOR SEVEN YEARS.
SHE RETIRED AT THE END OF
SEPTEMBER.
SHE WAS THEIR FIRST NURSE,
INDUSTRIAL ENGINEER, AND WOMAN
TO LEAD THE NATIONAL LIBRARY OF
MEDICINE.
SHE ACCOMPLISHED AN ENORMOUS
AMOUNT DURING HER TIME.
SHE MODERNIZED AND EXPANDED
PubMed, PUBMED CENTRAL,
clinicaltrials.gov, GENBANK,
SEQUENCE SEQUENCE READ ARCHIVE.
IN THE MEANTIME DR. SHERRY IS
ACTING DIRECTOR.
I RECEIVED AN E-MAIL FROM PATTI
LAST WEEK WHO SAID RETIREMENT IS
WONDERFUL SO DON'T FEEL BADLY
FOR HER.
FEEL BADLY FOR US.
NEXT SLIDE.
SO, JUST A REMINDER THAT WE HAD
HIRING AND I'M SURE THAT THERESA
WOULD BE HAPPY TO RECEIVE ANY
INQUIRIES.
IT'S A GREAT OPPORTUNITY FOR
YOUR GRADUATES WHO ARE LOOKING
FOR EITHER MORE TRAINING IN OUR
INTRAMURAL PROGRAM OR PEOPLE WHO
ARE LOOKING FOR
GOVERNMENT-RELATED JOBS.
AND I THINK THAT'S IT.
MY NEXT SLIDE IS A THANK YOU,
AND I'M HAPPY TO ANSWER
QUESTIONS.
>> THANK YOU, DR. BIANCHI.
QUESTIONS HERE OR FROM THE FOLKS
ON ZOOM?
>> CAN WE TAKE DOWN THE SLIDES
SO I CAN SEE PEOPLE?
THANK YOU.
DON'T BE SHY.
YOU CAN ASK ME ANYTHING.
>> ACTUALLY, THANK YOU FOR THAT
PRESENTATION.
THAT WAS REALLY INFORMATIVE.
I WAS REALLY CURIOUS ABOUT THE
COLLABORATIONS WITH, YOU KNOW,
OUTSIDE FOLKS LIKE YOU SAID,
BILL AND MELINDA GATES AND I WAS
ACTUALLY WONDERING IN THAT
COLLABORATION DOES NIH DO A
GROUP CALL TO BILL AND MELINDA
GATES?
HOW DOES THAT WORK?
I'M CURIOUS WHEN THEY SEND OUT
THE CALL FOR PARTICIPATION HOW
DOES NIH SUPPORT THOSE CALLS OR
DO THEY.
>> SO THAT'S A GREAT QUESTION.
THANK YOU.
THEY DO SEND OUT THE -- THE BILL
AND MELINDA GATES FOUNDATION
SENDS OUT REGULAR NOTICES OF
FUNDING OPPORTUNITIES.
THOSE ARE THEIR PRIORITIES.
SO WE DON'T HAVE ANYTHING TO DO
WITH THOSE.
WE DON'T FUND THOSE.
THE COLLABORATION IS REALLY AN
OPPORTUNITY FOR THEM TO INFORM
US WHAT THEIR PRIORITIES ARE AND
FOR US TO INFORM THEM TO INFORM
OUR PRIORITIES.
AND THEN TO SEE AREAS WHERE WE
CAN WORK TOGETHER.
WE BOTH HAD AN INTEREST, FOR
EXAMPLE, DECREASING MATERNAL
DEATHS DUE TO SEPSIS IN LOW- AND
MIDDLE-INCOME COUNTRIES.
SO WE HAD OUR INFRASTRUCTURE,
WHICH IS THE GLOBAL HEALTH
RESEARCH NETWORK, AND THEY
WANTED TO USE THAT
INFRASTRUCTURE.
AND SO WE THEN NEGOTIATED, TALK
ABOUT, WELL, WHO IS GOING TO
SUPPORT WHAT PART OF THAT
PROJECT.
AND THE FNIH ACTS AS THE BROKER.
THAT BEING SAID, WE MEET
REGULARLY WITH OUR COUNTERPARTS
ON THE MATERNAL NEONATAL AND
CHILD HEALTH GROUP, MEET WITH
THEM SEVERAL TIMES A YEAR.
AND HAVE PRESENTATIONS ON WHAT
WE'RE DOING AND THEN TALK
EXTENSIVELY ABOUT OPPORTUNITIES
FOR COLLABORATION.
AND FROM THAT GROW THE
OPPORTUNITIES.
SO, IF YOU'RE THINKING ABOUT
WHERE COULD YOU APPLY, YOU
SHOULD PAY ATTENTION TO WHAT
BILL AND MELINDA GATES
FOUNDATION E-MAILS ARE SENDING
OUT BECAUSE ULTIMATELY IT COULD
RESULT IN A COLLABORATION WITH
NIH.
BUT THEIR FUNDING IS SEPARATE
FROM OUR FUNDING WHEN THEY PUT
OUT THOSE MESSAGES.
DID THAT ANSWER YOUR QUESTION?
>> KIND OF.
I GUESS ONE OF THE SUBTLE THINGS
I WAS TRYING TO GET AT WAS THE
IDEA THAT WITH KIND OF THE NEW
'EM EMPHASIS ON GLOBAL
REHABILITATION, ALLIANCE, I
THOUGHT THAT THOSE
COLLABORATIONS YOU WERE
DISCUSSING WAS KIND OF MOVING
NICHD ON THE ALLIANCE OF
STRENGTHENING OUR, YOU KNOW, OUR
WORK IN THAT, IN THE DEVELOPING
SPACES BECAUSE IT'S TRUE WE DO
HAVE SOME ALLIANCES OR WORK
THAT'S HAPPENING THERE BUT IT
DOESN'T FEEL LIKE WE HAVE GIVEN
IT THE LEVEL ON THE STRATEGIC
LEVEL PLAN.
YOU KNOW, THIS IDEA THAT IT'S A
WORLDWIDE EFFORT AS WELL.
SO I WONDERED IS THAT SOMETHING
WE COULD DO AS A PART OF THIS
STRATEGIC PLAN THAT'S COMING OUT
NO 2025 TO ACKNOWLEDGE GLOBAL
REHABILITATION AND THE WORLDWIDE
SCALE ALSO OF INTEREST AS WELL.
>> YES, EXCELLENT SUGGESTION,
VERY MUCH ALIGNED WITH OUR
THOUGHTS.
TO DATE WE'RE NOT REALLY
COVERING IN THE MATERNAL
NEONATAL AND CHILD HEALTH
SUBGROUP REHABILITATION, AND THE
QUESTION IS DEFINITELY SOMETHING
WE CAN BRING IT AT OUR MEETING
WITH THEM TO SAY WHERE DOES THIS
FIT, BECAUSE THEY HAVE I THINK,
YOU KNOW, THERE'S SOMETHING LIKE
12 DIFFERENT SUBGROUPS.
MOST OF WHICH ARE RELATED TO
INFECTIOUS DISEASE BUT IT IS A
VERY IMPORTANT QUESTION,
SOMETHING I WOULD THINK WOULD
ALIGN WITH THEIR INTERESTS, SO I
THINK WE COULD BRING IT UP WITH
THEM AND SAY IS THIS SOMETHING
WE SHOULD COVER WITHIN THE
MATERNAL NEONATAL CHILD HEALTH
SUBGROUP OR SOMETHING THAT IS
GOING TO BE COVERED ELSEWHERE.
AND AS YOU KNOW, NCMRR IS NOT
EXCLUSIVELY NICHD SO IT MIGHT BE
THAT PERSONNEL FROM NINDS, FOR
EXAMPLE, WOULD BE MORE INVOLVED
IN THAT SUBGROUP.
BUT YES, OVERALL IT'S A VERY
IMPORTANT AREA, AND I KNOW THAT
THERESA HAS BEEN VERY ACTIVE
GLOBALLY.
I DON'T KNOW IF SHE WANTS TO
COMMENT ON THIS, BUT IT IS AN
AREA OF FUTURE RESEARCH FOR US.
>> THANK YOU, DIANA.
SO, WE HAVE FUNDED WITH FOGARTY
TO BUILD UP INFRASTRUCTURE, AND
WE CAN CERTAINLY DO MORE OF
THAT.
AND WE HAVE TRIED TO SUPPORT
W.H.O. TO DEVELOP THE TOOLS THAT
THEN GET DISTRIBUTED IN COUNTRY.
SO HOW CAN WE KIND OF HELP WITH
THAT HIGHER LEVEL TO START.
THERE IS -- AND I BELIEVE IT'S
AT EMORY, A W.H.O. COORDINATING
CENTER, ON GLOBAL REHAB.
I'M SURE I'VE GOTTEN THE NAME
WRONG.
AND THEY WERE PRESENTING AT
ACRM.
SO WE CAN GET MORE INFORMATION
TO YOU ON THOSE OPPORTUNITIES.
>> THANK YOU.
>> FRANCISCO?
>> YES, GOOD MORNING, DR.
BIANCHI.
THANK YOU FOR A WONDERFUL
UPDATE.
I JUST HAD A LITTLE COMMENT
PERHAPS ON THE PROPOSED MISSION
STATEMENT, WHICH AS YOU MENTION
NOW READS TO APPLY THAT
KNOWLEDGE TO OPTIMIZE HEALTH AND
PREVENT AND REDUCE ILLNESS.
OF COURSE THE VERY IMPORTANT
SENTIMENT HERE IS TO ESSENTIALLY
GET AWAY FROM ABLEISM.
WHAT I WAS TRYING TO UNDERSTAND
IS -- SO WE WANT TO OPTIMIZE
HEALTH, WE IS A GOOD THING, BUT
WE ALSO WANT TO REDUCE ILLNESS.
BUT DISABILITY IS NOT AN
ILLNESS, PER SE.
AND OPTIMIZED HEALTH IS -- CAN
READ AT OPTIMIZING YOUR
PHYSIOLOGY, WHEREAS PERHAPS
WHERE THIS IS GOING IS
OPTIMIZING YOUR ABILITY TO
PARTICIPATE AND HAVE A FRUITFUL
LIFE.
SO, I'M SURE YOU'VE GOTTEN
MULTIPLE COMMENTS FROM THIS BUT
IT SEEMS TO ME THAT A LITTLE
SINGLE OR TWO WORDS ABOUT LIFE
AND PRODUCTIVITY OR SOMETHING
THAT SPEAKS TO SOMETHING THAT IS
NOT PHYSIOLOGY OR ILLNESS BUT
RATHER PARTICIPATION IN THE
WORLD AND COMMUNITY.
>> I AGREE.
THAT'S WHY THE NICHD MISSION
STATEMENT SAYS "OPTIMIZE
ABILITIES FOR ALL."
IN THE INSTITUTE AND CENTER
DIRECTOR'S MEETINGING IN WHICH I
PARTICIPATED, I RAISED THE SAME
ISSUE.
I DON'T KNOW IF WHAT I SHOWED IN
THE PROPOSED MISSION STATEMENT
WILL BE THE ULTIMATE MISSION
STATEMENT BUT YOUR POINT IS
EXTREMELY WELL TAKEN.
>> THANK YOU SO MUCH.
>> THANKS YOU FOR THE UPDATE.
I HAVE A COMMENT ON THE
STRATEGIC PLAN.
PARTICULARLY ON EXPLORING THE
ROLE OF THE ENVIRONMENT.
I THINK THIS IS AN OPPORTUNITY
TO PARTNER WITH OTHER INSTITUTES
IN TERMS OF THE NEW EXPOSOME FOR
EXAMPLE IN TERMS OF
INTERVENTION.
BUT ALSO THE OPPORTUNITY TO
UNDERSTAND HOW WE CAN BRING THE
ENVIRONMENT TO THE -- HOW CAN WE
MIMIC THE NORMAL INTERACTION IN
THE WORLD OUTSIDE WITH FAMILIES,
SO THIS IS AN IMPORTANT
OPPORTUNITY FOR TECHNOLOGY A.I.,
YOU KNOW, THAT TYPE OF TECH THAT
COULD BE USED HERE.
>> YEAH, I TOTALLY AGREE.
EXCELLENT POINT.
AND WE ARE INVOLVED IN A NUMBER
OF DIFFERENT EFFORTS THAT
EXAMINE THE TYPICAL ENVIRONMENT
AND THE INCREASINGLY ATYPICAL
ENVIRONMENT WITH CLIMATE CHANGE
AND, YOU KNOW, WEATHER-RELATED
DISASTERS.
AND WE ARE WELL REPRESENTED ON
THE CLIMATE CHANGE AND HUMAN
HEALTH INITIATIVE, SPECIFICALLY
LOOKING AT OUR POPULATIONS,
PEOPLE OF REPRODUCTIVE AGE,
CHILDREN, PEOPLE WITH
DISABILITIES.
AND I COULD SAY THAT WHEN THAT
COMMITTEE STARTED WORKING, THEY
JUST NEVER THOUGHT ABOUT HOW
PEOPLE WHO ARE IN WHEELCHAIRS,
FOR EXAMPLE, WOULD NAVIGATE
SEVERE FLOODING OR SOME OTHER
ENVIRONMENTAL-RELATED DISASTER
SO I THINK IT'S REALLY A TEAM
EFFORT WHERE MEMBERS OF OUR
STAFF ARE SPEAKING UP AT ALL
LEVELS, AND I REALLY DO BELIEVE
THAT THIS RESULTED IN PEOPLE
WITH DISABILITIES BEING INCLUDED
AS AN UNDERREPRESENTED
POPULATION.
THIS IS HUGE.
I KNOW YOU KNOW THAT BUT IT IS
REALLY HUGE.
AND WE SHOULD REALLY CELEBRATE
THAT ACCOMPLISHMENT.
>> OTHER QUESTIONS?
I'M NOT SEEING ANY.
SO I WILL SAY, AGAIN, THANK YOU
SO VERY, VERY MUCH.
>> THANK YOU.
THANK YOU ALL FOR YOUR EFFORTS
ON THIS ADVISORY BOARD, AND I
WILL BE JUMPING BACK AND FORTH
BETWEEN THE AZITHROMYCIN WORKING
GROUP AND THEN THERE'S A THIRD
RADx GROUP THAT'S MEETING
TODAY TOO.
SO I WISH I HAD AT LEAST A TWIN.
BUT I WILL BE IN AND OUT.
AND HOPE IT'S A VERY, VERY
PRODUCTIVE MEETING TODAY AND
TOMORROW.
AND I'LL SEE YOU IN PERSON NEXT
TIME.
>> I JUST WANTED TO ADD THAT I
APPRECIATE THE CONTEXT OF ALL
THIS.
IT SHOWS NICHD IS SUCH A BIG
TENT AND HELPS UNDERSTAND WHY
NCMR IS FUNSING IN AN INSTITUTE
THAT PAYS SO MUCH ATTENTION TO
THE ENVIRONMENT, BASIC AND
CLINICAL ISSUES.
NCMR IS ONE PART, WE GET A FEW
SHOUT-OUTS IN ASPIRATIONAL
GOALS, EVEN THEY HAVE A BROADER
TEXTURE.
THE FOCUS ON LIMB LOSS IS NOT
JUST TRYING TO REGROW LIMBS BUT
TRYING TO INSPIRE BROADER
STUDIES ON TISSUE FUNCTION,
STIMULATING TISSUE AND SO ON,
EVEN THE DISCUSSION OF PEDIATRIC
PRECISION MEDICINE IS VERY
IMPORTANT TO SAY WHAT WORKS FOR
KIDS, WHAT DOESN'T WORK, AND
OPTIMIZE WHICH BENEFIT MOST FROM
WHICH THERAPIES FROM HELPING
PEOPLE NOT WASTE TIME AND TRYING
TO IDENTIFY WHAT'S WORKING AND
FOLLOWING EVEN IN ADULTS SO WE
APPRECIATE BEING PART OF THAT
FABRIC OF NICHD AND CONTRIBUTING
BACK AND FORTH WITH THE
DISCUSSION.
>> THANK YOU, RALPH, FOR THOSE
COMMENTS.
YEAH, IT IS -- WE ARE VERY MUCH
EMBEDDED IN THE OVERALL FABRIC
OF NIH, AND I THINK THAT OUR
STAFF ARE ABLE TO SEE THE
CONNECTIONS IN A WAY THAT
PERHAPS IS NOT TRUE IN SOME OF
THE MORE SILOED INSTITUTES.
WE COVER HUMAN DEVELOPMENT,
WHICH IS INCREDIBLY BROAD.
AND ALTHOUGH OUR NAME IS CHILD
HEALTH, IT'S A VERY LIMITED
FOCUS ON WHAT WE REALLY DO, AND
THAT'S ANOTHER KIND OF
INTERESTING ISSUE THAT WE'RE
TRYING TO ADDRESS.
BUT I DO WANT EVERYONE ON THE
BOARD TO RECOGNIZE HOW EMBEDDED
WE ARE IN SOME OF THE MAJOR
NIH-WIDE INITIATIVES,
REPRESENTING OUR POPULATIONS,
BRINGING OUR PERSPECTIVE,
BRINGING KNOWLEDGE AND SUBJECT
MATTER EXPERTISE.
SO IT'S NOT JUST PEDIATRICS, FOR
EXAMPLE.
SO THANKS, RALPH, FOR THAT
COMMENT.
>> THANK YOU.
WE'LL TAKE A 10-MINUTE BREAK
WE'LL TURN THE MICROPHONE BACK OVER TO
THERESA TALKING THAT THE NIH
RESEARCH PLAN, PLAN FOR
REHABILITATION RESEARCH.
>> I'M GLAD WE SWAPPED THE FIRST
PRESENTATION.
OTHERWISE YOU WOULD HAVE TO HEAR
ME A LOT, AND I SOUND A LOT, IN
MY OWN EARS, SO I JUST WANT TO
PUT A LITTLE BUG OUT THERE THAT
LATER TOMORROW WE'LL ASK FOR
TOPICS FOR FUTURE MEETINGS.
I'D REALLY LIKE YOUR FEEDBACK ON
FORMAT.
BEFORE TIMES WE DID THESE
MEETINGS A CERTAIN WAY.
WE PIVOTED DURING THE PANDEMIC.
AND NOW WE'RE IN NEW TIMES I
WOULD SAY.
WE DIDN'T DO HYBRID CERTAINLY
BEFORE, SO I WOULD LIKE YOUR
FEEDBACK ON FORMAT, LENGTH OF
MEETINGS.
I'LL HIT YOU UP FOR WORK IN THIS
PRESENTATION.
I WANT TO BE RESPECTFUL OF
PEOPLE'S TIMES, WHAT YOU ALL
THINK.
KEEP THAT IN THE BACK OF YOUR
MIND.
OKAY.
WE'RE GOING TO TALK A LITTLE BIT
ABOUT THE EXISTING RESEARCH
PLAN, KIND OF SOME BACKGROUND.
IT WOULDN'T BE A FEDERAL TALK IF
I DIDN'T TALK ABOUT SOME LAWS
AND LEGISLATION.
AND THEN MY VISION FOR WHERE
WE'RE GOING FORWARD, WHERE I
NEED YOUR HELP, TO BE FRANK.
NEXT SLIDE.
SO WE'RE GOING TO TRAVEL BACK IN
TIME TO 2016.
OUT OF ORDER BUT THESE ALL
HAPPENED IN 2016.
IF YOU WERE PAYING ATTENTION TO
DR. BIANCHI'S TALK SHE MENTIONED
THE 21ST CENTURY CURES ACT, AND
AS PART OF THAT EVERY NIH
INSTITUTE HAS TO DO A STRATEGIC
PLAN EVERY FIVE YEARS.
WE'RE NOT AN INSTITUTE SO WE
DON'T HAVE TO DO A STRATEGIC
PLAN EVERY FIVE YEARS.
WHAT WE GET TO DO IS A RESEARCH
PLAN EVERY FIVE YEARS.
WE WERE ESTABLISHED IN 1990, ON
THE LEFT SIDE IS THE ORIGINAL
LEGISLATION, OUR ORIGINAL
AUTHORIZING LANGUAGE.
IT TALKED ABOUT UPDATING YOUR
RESEARCH PLAN AS APPROPRIATE,
AND NOW WE HAVE LAWS THAT SAY IT
HAS TO BE NOT LESS THAN EVERY
FIVE YEARS WHICH MEANS EVERY
FIVE YEARS.
I HAD TO GOOGLE WHAT THAT MEANT.
I DON'T SPEAK LEGAL.
WE HAVE TO DO THINGS LIKE GIVE
REPORTS LIKE THE ONE I'M DOING
NOW TO YOU ALL.
WE ALSO NEED TO DO THAT WITH OUR
COORDINATING COMMITTEE.
WE'RE A GROUP OF PROGRAM STAFF
AT NIH WHO MEET MONTHLY.
WE TALK ABOUT RESEARCH AT NIH.
THESE ARE SOME MORE OF THE
THINGS WE HAVE TO DO INCLUDING
PERIODICALLY HOST SCIENTIFIC
WORKSHOPS, AND THESE ARE
N IH-WIDE.
WITH THAT, A LITTLE BIT OF
DIRECTION FROM CONGRESS, NEXT
SLIDE, WE HAD OUR FIRST IN A
WHILE NIH REHAB CONFERENCE IN
MAY OF 2016.
THIS WAS ALISON CERNICH'S COMING
OUT PARTY.
THERE'S FRANCIS COLLINS, WHO WAS
DIRECTOR OF NIH AT THE TIME AND
A YOUTH GROUP OF PEOPLE WITH
DISABILITIES PERFORMING ON STAGE
TO GET US STARTED.
WE HAD 475 PEOPLE IN THE ROOM,
SO TO SPEAK, AND ALSO OFFERED A
VIDEOCAST THAT HAD A COUPLE
HUNDRED PEOPLE LIVE AND PEOPLE
WENT BACK AND WATCHED LATER ON.
SO, THIS IS SOMEWHERE IN THE 500
TO 700 PEOPLE WE WERE REACHING,
SO KEEP THAT IN THE BACK OF YOUR
MIND.
FROM THAT, NEXT SLIDE, WE
LAUNCHED OUR FIRST RESEARCH PLAN
SINCE 1993.
SO THIS WAS PRETTY MUCH A FRESH
START, RIGHT?
AND WE HAD SIX THEMES, AND THIS
DOCUMENT HAS A LOT OF IDEAS IN
IT.
THESE ARE ALL THE THINGS WE
COULD DO UNDER THESE THEMES.
NEXT SLIDE.
WE STARTED TRACKING DATA.
SO FOR SOME WHO HAVE BEEN HERE
FOR A WHILE YOU'VE SEEN SLIDES
LIKE THIS WHERE WE TALK ABOUT
THIS IS WHERE WE WERE BEFORE, IN
2015, AND THIS IS HOW THE
REHABILITATION PORTFOLIO AT NIH
IS CHANGING AND GROWING AND WE
MAP IT TO THE THEMES NUMBER OF
GRANTS, DOLLARS SPENT, AND YOU
CAN SEE THERE'S CERTAINLY
DIFFERENCES IN AREAS OF THE
RESEARCH PLAN, HOW THEY ARE
BEING COVERED.
MOST IS INVESTIGATOR INITIATED.
AND WE'LL TALK MORE ABOUT
TARGETED DOLLARS LATER.
THIS IS PART OF MY REPORT TO YOU
HOW THE PLAN IS GOING.
NEXT SLIDE.
IN 2020, THAT WAS OUR FIVE
YEARS, AND I WAS ACTING DIRECTOR
AT THE TIME AND IT WAS 2020, AND
THIS IS NOT A GREAT TIME TO BE
PUTTING OUT A BIG CONFERENCE AND
REFRESHING A RESEARCH PLAN.
AND WE HAD GREAT COLLEAGUES AT
NIH WHO CAME TOGETHER TO HOST
THIS MEETING.
YOU KNOW, IN MAY AND JUNE OF
2020 WE THOUGHT WE COULD STILL
DO IT IN PERSON MAYBE, IN
OCTOBER.
WE REALLY DIDN'T KNOW AT THE
TIME.
BUT WE DID USE ONE OF THESE
FANCY ONLINE WORKSHOP CONFERENCE
PLATFORMS AND HERE ARE SOME
NUMBERS.
OVER 1200 PEOPLE, WERE ABLE TO
DO 90 POSTERS, EXHIBIT BOOTHS,
AND WE GOT MORE INCLUSION, I
WOULD SAY, FROM DOING THIS TYPE
OF FORMAT.
KEEP IN MIND THE OPTIONS WERE
DON'T DO A MEETING OR DO A
MEETING IN A VIRTUAL
ENVIRONMENT.
HERE'S SOME FEEDBACK, NEXT
SLIDE.
REMEMBER, THIS WAS IN 2020, WHEN
AT LEAST TO ME AN ONLINE
CONFERENCE WAS VERY NOVEL.
IT WAS NEW TO ME AT THE TIME.
SO SOME OF THE FEEDBACK WE GOT
THEY REALLY LIKED THE CONFERENCE
PLATFORM, THAT IT WAS KIND OF
INTERESTING AND NEW AND NOVEL,
GREAT SPEAKERS, GOOD VIRTUAL
EXPERIENCE.
BUT WE DID GET FEEDBACK THAT
PEOPLE REALLY MISSED THE
PERSONAL INTERACTIONS, AND THAT
IN-PERSON ELEMENT.
AND, YOU KNOW, THE TECHNOLOGY IS
NOT PERFECT, THERE WERE SOME
ISSUES WITH THE PLATFORM AT
TIMES.
I'M PRESENTING SO WE CAN THINK
ABOUT THE NEXT CONFERENCE, I
DON'T KNOW HOW MUCH WE CAN TAKE
FROM THIS BUT I'M PUTTING THAT
OUT THERE.
NEXT.
WE FOLLOWED THAT WORKSHOP WITH
OUR 21 PLAN AND HAD A WONDERFUL
WORKING GROUP, BOTH OF NIH STAFF
AND YOU ALL.
THE GROUP DECIDED TO KEEP THE
SAME THEMES.
WE WERE -- MOST RESEARCH PLANS
AND STRATEGIC PLANS TEND TO BE
ABOUT TEN YEARS.
IF YOU NOTICED IN DR. BIANCHI'S
CONVERSATION THIS MORNING SHE
TALKED ABOUT HOW THEY WERE
REFRESHING THE NICHD STRATEGIC
PLAN.
SO A LOT OF THOSE OVERARCHING
THEMES ARE LIKELY TO STAY THE
SAME.
WE HAVE A SIMILAR APPROACH, TO
KEEP THE SAME THINGS, YES, BUT
WE CHANGED SOME OF THE BULLETS
UNDERNEATH THEM TO BE MORE
ACTION ORIENTED, TO BE MORE
INCLUSIVE OF THE PERSON WITH THE
DISABILITY AND THEIR PREFERENCE,
EXPANDING THE LIFESPAN, MOVING
TOWARDS OPEN SOURCE DATA SHARING
AND COMMITMENT TO INDIVIDUAL
TRAINING AWARDS.
AND THEN AS WE ROLLED THIS OUT
WE TALKED ABOUT, YOU KNOW, THE
PLAN IS ONLY AS USEFUL AS THE
COMMUNITY MAKES IT SO WE CAN'T
PUT A FUNDING OPPORTUNITY
ANNOUNCEMENT OUT FOR EVERY
BULLET IN HERE.
SO PART OF THIS IS TO INFORM THE
FIELD SO THAT THEY CAN EMBRACE
IT.
AND COME INTO THE
INVESTIGATOR-INITIATED POOL.
OKAY.
NEXT SLIDE.
HERE IS SOME TOP LEVEL DOLLARS
AND INFORMATION ABOUT OUR REHAB
PORTFOLIO.
SO, THESE DATA COME FROM NIH
REPORTER, REPORT, EXCUSE ME, WE
HAVE A CATEGORY OF RCDC RESEARCH
CATEGORY DISEASE CONDITION.
THANK YOU.
AND WE HAVE ONLY LOOKED AT THE
EXTRAMURAL PORTION SINCE NCMRR
IS AN EXTRAMURAL FUNDER, SO IF
YOU GO TO THE CATEGORIES AND YOU
LOOK UP REHAB YOU'LL SEE THAT
THERE'S ANOTHER 5%+ DOLLARS
ADDED FROM THE INTRAMURAL
RESEARCH AT NIH.
I LOOK AT THIS AND I'M
ECSTATICS, WHEN I THINK OF WHERE
WE WERE IN 2015, AND HOW WE'VE
GROWN.
WE DON'T HAVE 23 DATA YET.
BUT WE'RE LOOKING AT 40+ PER
CENT GROWTH.
AND THIS IS YOU GUYS.
THIS IS THE FIELD PUTTING IN
GOOD APPLICATIONS, PUTTING IN A
LOT OF GOOD APPLICATIONS, AND
GETTING FUNDED THROUGH THE PEER
REVIEW SYSTEM.
THIS ISN'T NIH A PRIORI SAYING
THIS IS THE AMOUNT OF MONEY
WE'RE GOING TO SPEND IN THIS
AREA.
SO THIS IS A TESTAMENT TO
EVERYTHING THAT YOU ALL ARE
DOING.
AND, YOU KNOW, I AM QUITE HAPPY
ABOUT IT.
NEXT SLIDE.
SO, OUR TOTAL NUMBER IS $934
MILLION, THAT TAKES INTO ACCOUNT
THE INTRAMURAL BUDGET AS WELL.
YOU CAN SEE WE'RE MOSTLY FUNDING
RESEARCH PROJECT GRANTS.
WE DO HAVE THIS OVERINVESTMENT
IN SBIR/STTR, WHICH WOULD BE
AVERAGES AT NIH IS AROUND 3
1/2%.
I WANT TO ACKNOWLEDGE THE WORK
NINDS IS DOING WITH THE BIGGEST
DOLLAR AMOUNT.
SOME WILL BE GRANTS MANAGED BY
NINDS THROUGH THE BRAIN
INITIATIVE AND "HEAL" AND THINGS
LIKE THAT.
AND ALSO NIA AND NIDCD.
THIS IS ALSO PART OF THE -- WHEN
I TALK ABOUT COLLABORATION, WE
REALLY MEAN IT, BECAUSE WE HAVE
A GREAT BUDGET.
BUT I DON'T HAVE A
BILLION-DOLLAR BUDGET.
WE NEED TO BE WORKING WITH OUR
COLLEAGUES AT THE OTHER
INSTITUTES AND THEY HAVE ALL
BEEN WONDERFUL COLLEAGUES IN
DOING THESE COLLABORATIONS.
OKAY.
NEXT SLIDE.
SO, WE CONTINUE TO REPORT OUT
ON -- AS WE BRING IN NEW GRANTS
INTO THE PORTFOLIO HOW ARE
THINGS CHANGING.
SOME AREAS ARE NOT CHANGING A
WHOLE LOT.
AND WE HAVE, NEXT SLIDE,
CROSS-CODED SOME OF THESE TO TRY
TO SEE IF THERE ARE UNDERLYING
PATTERNS THAT WE'RE MISSING AS
FAR AS A PRIMARY THEME OF THE
RESEARCH VERSUS SECONDARY THEME.
WE HAVE NOT SURPRISING MOST OF
OUR RESEARCH TENDS TO BE IN
RESEARCH DESIGN AND METHODOLOGY.
BUT WE HAVE STRONG SUPPORT IN
TECHNOLOGIES AND DEVELOPMENT AS
WELL AS IN TRANSLATIONAL
RESEARCH.
AND DIFFERENT I.C.s TEND TO
LEAN IN THOSE MORE, BUT THIS IS
THE AGGREGATE.
NEXT SLIDE.
SO, WE HAVE SOME TOOLS AT NIH.
CAN YOU TAKE DOWN THE CLOSED
CAPTION?
IT'S COVERING MY REFERENCES, I'M
SORRY.
OKAY.
MOVE IT OVER.
OKAY.
IF ANYONE WOULD LIKE THEM IN THE
ROOM BACK ON PLEASE JUST LET ME
KNOW AND WE CAN DO THAT.
WE WANT EVERYONE TO GET THE
ACCESS THAT THEY NEED.
OKAY.
SO, ONE OF THE TOOLS THAT NIH
PROVIDES THROUGH OUR OFFICE OF
PORTFOLIO ANALYSIS IS CALLED
EYESIGHT.
EVE -- WE'VE BEEN PLAYING
AROUND WITH METRICS FROM THAT.
HERE IS AN EXAMPLE.
WE TOOK OUR CURRENT 2022
PORTFOLIO AND POPPED IT IN, AND
THIS CONFIRMS TO ME A LOT OF
THINGS, IT SAYS MOST RESEARCH IS
IN HUMAN SUBJECTS WITH LESS IN
ANIMAL AND MOLECULAR AND
CELLULAR.
WHAT I REALLY LIKE, I DON'T HAVE
A POINTER, BUT IF YOU WANT TO
CIRCLE THAT MEDIAN NUMBER, THAT
1.8, YEAH.
NIH HAS DEVELOPED THIS METRIC
CALLED THE RELATIVE CITATION
RATIO.
AND IT MEASURES SCIENTIFIC
INFLUENCE OF PAPERS BY FIELD AND
ADJUSTS FOR TIME TO LOOK AT HOW
MANY CITATIONS A PAPER HAS
RECEIVED.
AND THE BENCHMARK IS 1.
SO AN AVERAGE PAPER IN A FIELD
WOULD GET 1.
THIS SAYS THE RESEARCH NIH IS
FUNDING IS MUCH MORE IMPACTFUL
THAN AN AVERAGE REHAB PAPER IN
THE SAME LENGTH OF TIME.
THAT'S SOMETHING WE CAN LOOK AT.
WE CAN ALSO LOOK AT, YOU KNOW,
WHAT'S THE LIKELIHOOD IT'S GOING
TO TRANSLATE, SO THERE'S THESE
FANCY TRIANGLES, AND SINCE WE'RE
ALREADY SO MUCH INTO HUMAN WORK,
I DON'T THINK IT'S SURPRISING
THAT WE HAVE THE -- WE'RE FAIRLY
HIGH IN THAT TRANSLATIONAL
SHIFT.
WE CAN ALSO LOOK AT
PUBLICATIONS.
AND WE'RE GOING TO LOOK AT THAT
A LITTLE BIT IN MORE DETAIL IN
THE NEXT SLIDE.
I'M GOING TO PAUSE AND THANK TWO
PEOPLE WHO HOPE ARE STILL BEHIND
ME.
ALICIA ROSS AND JUNE LEE, WHO
ARE HELPING WITH PULLING
TOGETHER THIS DATA AND DOING
THESE ANNUAL SEEMS SO --
ANALYSES, SO I WANT TO THANK
THEM FOR THE HELP WITH THESE.
WE LOOKED AT OUR 2022 PORTFOLIO,
YOU MIGHT SAY THAT'S
INTERESTING, HOW DO YOU HAVE
PUBLICATIONS IN 2015 FOR YOUR
2022 PORTFOLIO?
THIS IS -- THIS INCLUDES GRANTS
THAT ARE LONGER THAN FIVE YEARS
SO THEY HAVE BEEN RENEWED, FOR
EXAMPLE, OR, YOU KNOW, SOME
TRAINING PROGRAMS ARE
LONGSTANDING.
SO THE GRANT IS STILL ASSOCIATED
WITH PUBLICATIONS IN PRIOR YEARS
BUT THESE WERE STILL AWARDED IN
2022.
SO, I WAS ALL EXCITED ABOUT THIS
BECAUSE I THOUGHT IT CLEARLY
SHOWED CHANGES THAT HAPPENED
DURING THE PANDEMIC, MORE PEOPLE
WERE DOING MORE PUBLICATIONS.
BUT BECAUSE OF THAT TRICK OF HOW
MANY GRANTS ARE IN THIS POOL,
THIS MIGHT BE ARTIFICIAL.
SO I NEED TO FIGURE OUT HOW WE
CAN DIG INTO THAT A LITTLE BIT
MORE.
LOOKING AT, YOU KNOW, WHEN DOES
A PUBLICATION COME OUT VERSUS
WHEN DID THE AWARD COME OUT,
THESE ARE DISCREPANCIES.
THESE ARE THE THINGS WE'RE
LOOKING INTO.
WE ALSO HAVE ACCESS TO PATENTS,
NEXT SLIDE.
WE FUND A LOT OF RESEARCH THAT
IS TRANSLATIONAL, THAT WE WANT
TO GET INTO SMALL BUSINESS
HANDS, WE WANT TO GET OUT INTO
PEOPLE'S LIVES.
I THINK IT'S GOOD WE SEE THIS
MANY PATENTS BEING SUPPORTED.
I MENTIONED THAT JUNE HAS AN
INTEREST IN A.I. SO SHE WAS ABLE
TO PULL AND SEE WHAT KIND OF
CHANGES WE'RE SEEING IN PATENTS
RELATED TO REHAB.
YOU SEE THAT BIG JUMP IN THE
NUMBER OF A.I.-RELATED PATENTS.
OKAY.
NEXT SLIDE.
SO, THAT WAS LIKE THE
30,000-FOOT LEVEL, BUT I WANTED
TO DIG DEEPER TO TALK ABOUT EACH
THEME AND MAYBE WHAT WAS AN NIH
ACTIVITY THAT SUPPORTED IT AND
MAYBE SCIENCE ADVANCES.
SO IN THE FIRST THEME WE'RE
LOOKING AT REHAB ACROSS THE
LIFESPAN.
I HAVE SOME RFAs WE PUT OUT,
THE FIRST FROM THE AGING
INSTITUTE LOOKING AT CARDIAC
REHAB IN OLDER ADULTS, AND NCMRR
DID ONE ON PEDIATRIC.
IF YOU READ DOWN IN THE BULLETS
THERE WAS DISCUSSION ABOUT THE
IMPORTANCE OF INTERACTING WITH
THE "ALL OF US" RESEARCH PROGRAM
AT NIH AND WE HAVE AN AMERICAN
ASSOCIATION ON HEALTH AND
DISABILITY CONTRACT FROM "ALL OF
US," TO AAHD TO GET MORE PEOPLE
WITH DISABILITIES ENROLLED.
THERE WAS RECENTLY A PUBLICATION
THAT SAID MAYBE WE'RE NOT DOING
SO GREAT ON THAT ENROLLMENT IN
SENSORY DISABILITY BUT WE DO
HAVE THIS COLLABORATION AND
WE'RE TRYING TO GET THAT
ENROLLMENT UP.
ON THE SCIENTIFIC SIDE, WE HAVE
PAPERS WHERE WE'RE DOING, YOU
KNOW, MOVEMENT THERAPY IN VERY
YOUNG CHILD, STUDIES OF DOSING
AND WE HAVE STUDIES OF TIMING.
AND THESE WERE ALL THINGS THAT
WERE LAID OUT UNDER THIS THEME
AS BEING IMPORTANT.
NEXT.
SO, UNDER COMMUNITY AND FAMILY I
THINK IT WAS PRETTY CLEAR IN
THOSE EARLIER GRAPHS THAT THIS
IS THE AREA THAT WE WEREN'T
DOING A GREAT JOB.
AND I WANTED TO POINT OUT A
COUPLE FUNDING OPPORTUNITIES
THAT WE TARGETED SO WE HAD ONE
FROM NHLBI LOOKING THE
CARDIOVASCULAR AND PULMONARY
REHAB IN THE COMMUNITY.
WE HAVE THE RFA WE PUT OUT
LOOKING AT COMMUNITY-BASED
PHYSICAL ACTIVITY INTERVENTIONS
FOR WHEELCHAIR USERS.
ONE THING WE REALLY STARTED TO
DO IN NOTICES WE CONTROL IS TO
REQUIRE PLANS FOR LIVED
EXPERIENCE THAT IT IS A
REQUIREMENT, IF YOU DON'T HAVE
IT WE SEND IT BACK WITHOUT
REVIEW.
SO THAT'S OUR WAY OF SIGNALING
THAT IT'S REALLY IMPORTANT TO
HAVE YOUR CONSUMERS OR END USERS
AS PART OF THE RESEARCH PLAN.
AND THEN TO ME THE BIGGEST THING
WE COULD HAVE HAD HAPPEN WAS
EARLIER THIS FALL, GETTING THAT
HEALTH DISPARITIES DESIGNATION.
AND, YOU KNOW, A LOT OF PEOPLE
WORKED A LONG TIME TO PUSH FOR
THAT.
AND PEOPLE AROUND THIS TABLE
TOO.
SO I WANT TO JUST ACKNOWLEDGE
THAT TO ME THIS IS THE BIGGEST
GAME CHANGER AND I DON'T KNOW
THAT WE WOULD CALL THIS THEME
COMMUNITY AND FAMILY ANYMORE.
WE MIGHT CALL IT SOCIAL
DETERMINANTS OF HEALTH OR
SOMETHING DIFFERENT NOW.
YOU KNOW, A FEW ADVANCES IN THIS
CATEGORY, WE GOT WORK FROM LISA
IZONI LOOKING AT SURVEYS OF
PHYSICIANS AND HOW THEY ARE
KNOWLEDGEABLE OR NOT ABOUT THE
AMERICANS WITH DISABILITIES ACT,
WHAT KIND OF ACCOMMODATIONS THEY
NEED TO PROVIDE.
AND THEIR ATTITUDES ABOUT HAVING
PEOPLE WITH DISABILITIES AS
THEIR PATIENTS.
NOT GREAT.
WE WERE HOPING IT WOULD BE
BETTER.
BUT I THINK IT'S REALLY
IMPORTANT WE HAVE THAT
INFORMATION OUT THERE.
NINDS IS DOING A LOT.
THEY HAVE PUT OUT A SOCIAL
DETERMINANTS OF HEALTH
FRAMEWORK.
AND THEN I PULLED AN INTRAMURAL
PAPER FROM OUR COLLEAGUES AT
NIAMS, LOOKING AT THE
CORRELATION BETWEEN MOBILITY
IMPAIRMENT AND LOSS OF INCOME OR
YEARS WORKING.
SO WE HAVE SOME DATA SHOWING
THAT, YOU KNOW, THE REDUCTION IN
MOBILITY LEADS TO REDUCTION IN
INCOME AND WORKING YEARS.
NEXT SLIDE.
SO, TECHNOLOGY USED IN
DEVELOPMENT IS KIND OF CORE TO A
LOT OF REHAB AND IT'S AN AREA
THAT, YOU KNOW, WE WERE DOING
PRETTY WELL IN.
BUT I WANTED TO HIGHLIGHT SOME
WORK PARTICULARLY AROUND
INVASIVE NEURAL DEVICES THAT
HAVE BEEN ENABLED BY THE NIH
BLUEPRINT, THE MedTech
PROGRAM AS WELL AS THE BRAIN
INITIATIVE.
YOU KNOW, THE NUMBER OF
FIRST-IN-HUMAN INVASIVE
NEUROMODULATION STUDIES ARE JUST
EXPLODING.
AND I ALSO WANTED TO CALL OUT
COLLEAGUES AT NIBIB, SO THEY
WERE OUR LEAD DURING THE
PANDEMIC ON GETTING HOME TESTS
FOR COVID-19.
AND, YOU KNOW, THEY GOT FEEDBACK
SAYING THESE ARE NOT ACCESSIBLE.
YOU KNOW, PEOPLE WITH
DISABILITIES CAN'T USE THEM.
PEOPLE WITH LOW VISION CAN'T USE
THEM.
AND THEY REALLY TOOK THAT AND
SET UP A WORKING GROUP AND WENT
THROUGH AND DID ALL THE ANALYSES
AND WHEN THEY CAME UP WITH BEST
PRACTICES THEY PAIRED WITH THE
U.S. AX SAYS -- ACCESS BOARD TO
GET THOSE OUT THERE BECAUSE
WE'LL HAVE ANOTHER NEED FOR
AT-HOME TESTS, GETTING THAT
INFORMATION AND WHAT WE'VE
LEARNED OUT THERE I THINK IS
GREAT.
IN SCIENCE ADVANCES I MENTIONED
THE OPENCAP TECHNOLOGY FROM THE
DELP LAB EARLIER.
WE PULLED A PATENT RELATED TO
TELEREHAB.
WE GET A LOT OF QUESTIONS ABOUT
THAT.
AND THEN I WANTED TO HIGHLIGHT A
POSTDOCTORAL FELLOW WHO HAS SOME
PRETTY COOL MORPHINE ELECTRODE
TECHNOLOGIES THAT COULD BE USED
FOR MYOELECTRIC.
NEXT SLIDE.
HERE AGAIN THIS IS AN AREA WE
WERE DOING A LOT.
WE DIDN'T NEED TO INCENTIVIZE
THIS RESEARCH DESIGN AND
METHODOLOGY WHICH IS WHERE A LOT
OF CLINICAL TRIALS ALSO END UP
IN OUR CODING.
WE DIDN'T NEED TO INCENTIVIZE
THAT WITH FUNDING OPPORTUNITIES
NECESSARILY.
BUT WE, YOU KNOW, AS NIH AND
WE'RE PART OF THAT ENVIRONMENT,
WE HAVE BEGUN IMPLEMENTATION OF
THE DATA MANAGEMENT SHARING
POLICY, WE HAVE CURATED A HUGE
NUMBER OF COMMON DATA ELEMENTS.
AND THEN UNDER THIS I WOULD ALSO
PUT THINGS LIKE SETTING UP
REGISTRIES.
YOU'VE HEARD ME TALK ABOUT THE
COLLABORATION WITH DoD ON OUR
LIMB LOSS AND PRESERVATION
REGISTRY.
IT'S COMING TO THE POINT OF NO
LONGER BEING ON THE CONTRACT AND
JOE HAS DONE A TREMENDOUS JOB
MANAGING THIS WITH OUR PARTNERS.
THEY HAVE -- I THINK THEY SAID
250,000 PATIENTS NOW IN THIS
REGISTRY WITH OVER 10 MILLION,
OKAY, 10 MILLION HEALTH
ENCOUNTERS.
SO AND MOST OF THEM ARE IN
PRESERVATION.
SO I THINK WE'RE LEARNING A LOT
FROM THIS REGISTRY.
AND WE TALKED ABOUT THE CVI ONE
EARLIER.
UNDER THIS CATEGORY I WANT TO
ACKNOWLEDGE THE WORK IN A NIDCD
DID, FOR MANY YEARS BUILDING A
RESEARCH BASE THAT ALLOWED THE
FDA TO CREATE A NEW CATEGORY FOR
OVER THE COUNTER HEARING AIDS.
WITHOUT THAT LEG WORK THAT
WASN'T POSSIBLE.
KELLY KING FROM NIDCD DOES A
GREAT TALK, IF YOU WANT TO HEAR
THE STORY WE CAN INVITE HER TO
TELL YOU THAT.
THIS IDEA WE'RE USING EXISTING
DATA, HERE'S A PAPER FROM KUMAR
FUNDED BY NIMHD, MINORITY HEALTH
AND HEALTH DISPARITIES, LOOKING
AT DISPARITIES IN PEOPLE WITH
DUAL ELIGIBILITY FOLLOWING
STROKE.
NEXT SLIDE.
SO, I HAVE THE WORD "RESEARCH"
HIGHLIGHTED.
ITALICIZED.
IN OUR ORIGINAL RESEARCH PLAN WE
CALLED THIS TRANSLATIONAL
SCIENCE.
AND I GOT A LOVELY E-MAIL FROM
THE DIRECTOR OF NCATS, NATIONAL
CENTER FOR ADVANCING
TRANSLATIONAL SCIENCE, WHEN WE
CAME OUT WITH OUR NEXT VERSION
AND HE SAID THIS IS A GREAT
PLAN, EXEMPT YOU'RE NOT DOING
TRANSLATIONAL SCIENCE.
YOU'RE DOING TRANSLATIONAL
RESEARCH.
I SAID, OKAY, THANK YOU, WE'LL
CHANGE THIS.
I APPRECIATE THE FEEDBACK.
SO, AND OF COURSE HE WAS
ABSOLUTELY RIGHT.
WE WEREN'T DOING THE SCIENCE OF
HOW YOU TRANSLATE.
WE WERE DOING TRANSLATIONAL
RESEARCH.
SO WE HAVE UPDATED THAT IN OUR
MORE RECENT PLAN.
YOU KNOW, DR. BIANCHI TALKED
ABOUT LIMB REGENERATION.
AND ASPIRATIONAL GOAL FOR NICHD,
IT WAS BURIED IN HER SLIDE BUT
WE JUST HAD A FUNDING
OPPORTUNITY COME IN AND THAT WAS
REVIEWED JUST A FEW WEEKS AGO.
AND THAT WAS BASED OFF A
WORKSHOP WE DID WITH OUR
DEVELOPMENTAL BIOLOGY
COLLEAGUES.
I THINK I MENTIONED THE OTHER
THINGS ON THIS SLIDE.
AND THEN THERE'S A PAPER FROM
CHRISTIAN WELLE'S GROUP, WE HAVE
APPROVAL FOR VNS FOR STROKE
REHAB BUT THAT DOESN'T MEAN WE
UNDERSTAND ALL THE MECHANISMS.
THIS IS A PAPER FROM ""NEURON"
USING OPTOGENETICS AND CALCIUM
IMAGING TO UNDERSTAND HOW VNS IS
CHANGING THE BRAIN.
AND UNDERSTANDING THOSE
MECHANISMS TO IMPROVE ON
CLINICAL CARE.
OKAY.
LAST SLIDE.
I'M GETTING THERE, GUYS.
REMEMBER, I SAID I'M
CONGRESSIONALLY OBLIGATED TO
UPDATE YOU GUYS.
SO THE OTHER THING IS
INFRASTRUCTURE.
SO WE HAD A GREAT GROUP SPEND
LAST YEAR MAKING RECOMMENDATIONS
ABOUT INFRASTRUCTURE.
AND YOU WILL CONTINUE TO HEAR
MORE FROM THAT, MORE FROM US ON
INFRASTRUCTURE.
WE'RE TRYING TO LOOK AT THE
WHOLE PIPELINE, OR PATHWAY, WE
HAVE A REPORT THAT MICHELLE IS
GOING TO GIVE ABOUT THE
IMPORTANCE OF TRAINING AND
CAREER DEVELOPMENT, AND NCMRR'S
CONTROL IN THAT.
I WANTED TO HIGHLIGHT A COUPLE
PROGRAMS IN OUR R25 MECHANISMS,
COURSES, REHAPPEN OUT OF USC AND
TIDE TRAINING OUT OF DELAWARE
AND PITT.
OKAY.
SO, THAT'S WHERE WE ARE TODAY.
NEXT SLIDE.
NOW WE NEED TO START THINKING
WHERE WE'RE GOING TO GO.
SO, I WOULD ARGUE THAT A LOT HAS
CHANGED SINCE 2016.
WE HAVE OUR NEW HEALTH
DISPARITIES DESIGNATION.
WE'RE IN THE PROCESS OF REVISING
THE NIH MISSION STATEMENT.
THERE'S SO MUCH MORE
CONVERSATION AROUND HEALTH
EQUITY AND ABLEISM, WHERE DOES
REHAB FIT IN, WHAT DO WE NEED TO
EDUCATE NIH AND OURSELVES ON AS
PRIORITIES.
LONG COVID WASN'T EVEN A
CONVERSATION WHEN THE ORIGINAL
THEMES WERE PUT TOGETHER SO I
WOULD ARGUE THAT IT IS TIME FOR
US TO COME UP WITH SOME NEW
THEMES.
OKAY.
NEXT SLIDE.
HOW DO WE DO THAT?
THIS IS THE NIH PLAN.
NIH RESEARCH PLAN FOR
REHABILITATION.
SO, THE ONUS IS ON NIH TO PUT IT
TOGETHER WITH WHAT I HOPE IS
INPUT FROM THE COMMUNITY AND
FROM YOU ALL.
YOU ARE OUR EXPERTS THAT WE NEED
TO WEIGH IN HERE.
SO, MY PLAN, YOU CAN TELL ME
WHAT YOU THINK OF THIS PLAN, IS
TO START WITH REQUEST FOR
INFORMATION EARLY NEXT YEAR.
HOW DOES THE FIELD THINK WE'VE
BEEN DOING?
YOU KNOW, THIS IS A PULSE CHECK.
ARE THERE THINGS WE SHOULD START
CONSIDERING IN THEMES?
WITH THAT COORDINATING COMMITTEE
THAT I MENTIONED THAT WE MEET
EVERY MONTH, NCMRR STAFF AND
THAT COMMITTEE WILL REVIEW THOSE
AND START DRAFTING THEMES.
A YEAR FROM NOW WHEN WE MEET
WE'RE GOING TO TALK ABOUT WHAT
WE'VE DONE IN THAT TIME.
WE HAVE TO HAVE THAT CONFERENCE
I MENTIONED.
TENTATIVELY, VERY TENTATIVELY,
I'VE THOUGHT OF FEBRUARY OF
2025.
SO WE CAN HAVE SOME OF THE INPUT
FROM THAT CONFERENCE, INFORM OUR
NEW THEMES, NEW RESEARCH PLAN.
I HAVE REALLY, REALLY ENJOYED
OVER THE LAST COUPLE YEARS
HAVING SUBCOMMITTEES OF THIS
BOARD, GETTING TO TALK AND MEET
WITH YOU ON A MORE REGULAR
BASIS.
SO, I HAVE A COUPLE IDEAS FOR
THOSE.
2025 IS LIKE A LONG TIME BUT
WE'LL NARROW THAT DOWN.
ONCE WE FEEL GOOD ABOUT THOSE
THEMES, DO ANOTHER RFI WITH THE
COMMUNITY, AND THIS ALL NEEDS TO
BE DONE IN TWO YEARS BECAUSE I
LEARNED IT TAKES A GOOD SIX TO
EIGHT MONTHS TO GET ANYTHING
CLEARED AND ACTUALLY PUBLISHED.
IF I WANT THIS DOCUMENT
AVAILABLE IN 2026 IT NEEDS TO BE
DONE EARLIER.
I'M LOOKING AT MY OTHER
COLLEAGUES ABOUT HOW LONG IT
TAKES TO GET THINGS CLEARED.
THEY ARE NODDING ALONG.
SO, YOU MIGHT BE SAYING WHY ARE
WE TALKING ABOUT THIS NOW?
THAT IS WHY BECAUSE I KNOW THIS
IS GOING TO TAKE US A COUPLE
YEARS TO GET THROUGH.
SO, NEXT SLIDE.
THE ASK.
SO WHAT DO I NEED FROM YOU ALL?
SO, I'M ENVISIONING KIND OF TWO
WORKING GROUPS, THAT'S WHAT WE
DID LAST TIME.
MAYBE NO.
YEAH, I GUESS LAST TIME AND THE
TIME BEFORE.
ONE GROUP WAS WORKING ON
CONFERENCE PLANNING.
AND THIS IS KIND OF HIGH-LEVEL
ADVICE.
SO ARE WE GOING GOING TO DO IT
IN PERSON, HYBRID, WHAT KIND OF
THEMES, WHAT'S IMPORTANT IN
INVOLVING STUDENTS AND TRAINEES?
YOU KNOW, THOSE TYPES OF THINGS.
SO I'M ENVISIONING THAT GROUP
MEETING EVERY OTHER MONTH FROM
THE SUMMER TO WHEN THE MEETING
HAPPENS.
THE SECOND GROUP WILL PICK UP
AFTER THAT WHERE WE'RE GETTING
MORE FEEDBACK ON THE SCIENTIFIC
THEMES.
SO, HAVING YOUR BUY-IN IS REALLY
IMPORTANT.
I SAID EARLIER THE PLAN IS ONLY
USEFUL IF YOU ALL, LARGE YOU,
THINK IT'S USEFUL.
SO, I'M GOING TO STOP THERE AND
YOU DON'T HAVE TO VOLUNTEER
RIGHT NOW.
I WOULD LOVE IT IF YOU
VOLUNTEERED RIGHT NOW BUT WE'LL
BE FOLLOWING UP AFTER THIS
MEETING TO SEE IF THERE'S
INTEREST IN PARTICIPATING IN
THESE TYPES OF WORKING GROUPS.
SO I'LL PAUSE AND ASK FOR
QUESTIONS.
>> SO THANK YOU AGAIN, THERESA.
THE BREADTH AND DEPTH OF ALL THE
WORK THAT'S GOING ON IS
ASTOUNDING.
THANK YOU.
QUESTIONS, COMMENTS, VOLUNTEERS?
>> RALPH, YOU HAVE TO DO IT.
>> YEAH, AS YOU'RE THINKING
ABOUT THIS, A LOT OF ISSUES COME
UP FROM THE REHAB FIELD, FROM
THE RESEARCHERS, FROM OUR
ADVOCATES, OUR SUPPORTERS, FROM
PEOPLE WITH DISABILITIES.
THE FIRST LEVEL ISSUE, IS IT
REALLY A RESEARCH QUESTION OR
MORE A POLITICAL WILL OR
SOMETHING LIKE THAT.
EVEN SO, HOW COULD RESEARCH
INFLUENCE IT?
THE SECOND ISSUE IS SO IF THERE
IS AN ISSUE THAT WE SHOULD THINK
ABOUT HOW IS IT RESEARCHABLE?
AND THEN THE NEXT LEVEL IS HOW
DO WE HELP?
SO THERE'S ALREADY
INVESTIGATOR-ISSUED APPLICATION,
WHY ISN'T THAT ALREADY OUT
THERE?
WE HAVE TO GENERATE MORE
INFRASTRUCTURE.
IS THERE SOME PIECE MISSING,
SOMETHING WE HAVE TO
INCENTIVIZE?
YOU CAN THINK ABOUT THAT LEVEL.
YOU FOLKS HAVE THE SKILL SET,
PART OF THE REASON YOU'RE ON THE
ADVISORY BOARD IS THE BROAD
CONNECTIONS BACK TO YOUR
COMMUNITIES, WHAT YOU BRING.
SO THAT'S KIND OF A PREAMBLE TO
SOME OF THIS DISCUSSION.
>> MICHELLE?
>> POINT OF CLARIFICATION.
SO WITH THE NEW THEMES, IS THERE
ASSUMPTION THE OLD THEMES ARE NO
LONGER APPLICABLE OR WHEN YOU'RE
SOUNDING OUT THE REQUEST FOR
INFORMATION ARE YOU GOING TO ASK
ABOUT, HEY, THESE THEMES WE HAD,
WHAT SHOULD STILL CONTINUE AND
THEN WHAT SHOULD BE NEW OR
WHAT'S OBSOLETE?
WAS THAT THE PLAN?
JUST WANTED TO CLARIFY.
>> I HAVEN'T WRITTEN THE RFI BUT
THAT SOUNDS LIKE A PRETTY GOOD
START.
THIS IS WHERE WE ARE.
I HAVE SOME IDEAS WHAT I THINK
NEW THEMES ARE BUT WHAT DO I
KNOW, RIGHT?
SO, YES, I DON'T EXPECT IT WILL
BE WHOLE NEW.
>> LEWIS?
>> SORRY.
HI, EVERYONE.
GREAT PRESENTATION.
REALLY THOUGHTFUL.
I WAS CURIOUS, MORE OF A COMMENT
THAN A QUESTION, BUT AS RELATES
TO DEVELOPMENT OF THESE THEMES
WHICH I THINK IS -- I THINK YOUR
WORKFLOW IDEA IS REALLY GOOD.
ONE OF THE THINGS THAT I WAS
THINKING ABOUT PAST COUPLE YEARS
OF GOING TO THE PUBLIC HEALTH
ASSOCIATION ANNUAL MEETING, AND
SEVERAL TIMES IN THAT MEETING
IT'S COME UP ABOUT HOW KIND OF
THE REHABILITATION RESEARCH IS
TRADITIONALLY YOU KNOW KIND OF
FUNDED THROUGH PORTFOLIOS THAT
YOU DISCUSSED HERE, THERE'S A
PERCEPTION IT DOESN'T ALWAYS
ALIGN WITH PUBLIC HEALTH
INTERESTS AS FAR AS APHA WOULD
KIND OF THINK ABOUT THAT.
AND IT REALLY STRUCK ME WHEN YOU
WERE TALKING ABOUT DEVELOPING
THEMES AND MAYBE THINKING ABOUT
A THEME FOCUSED ON HEALTH
DISPARITIES, DEFINITE A
NARRATIVE APHA DEVELOPED, A COOL
IDEA TO THINK ABOUT WAYS IN
WHICH WE CAN BRING THESE FIELDS
TOGETHER A LITTLE BIT MORE
INTIMATELY.
I KNOW THERE'S A LOT OF FOLKS
THAT ARE IN THE, YOU KNOW,
PUBLIC HEALTH WORLD THAT ARE
REALLY INTERESTED IN KIND OF
THOSE EXECUTABLE SCIENTIFIC
QUESTIONS, BUT DON'T NECESSARILY
SEE STRONG WAYS TO COLLABORATE
WITH PEOPLE THAT ARE REALLY
INTERESTED IN THOSE KIND OF
SCIENTIFICALLY EXECUTABLE SORTS
OF QUESTIONS.
ALSO JUST A THOUGHT AS MAYBE
WE'RE GOING ALONG, WAYS IN WHICH
WE CAN, YOU KNOW, BRING THOSE
FOLKS TO THE TABLE, THINKING
ABOUT IDEATING RESEARCH THEMES
COULD BE COOL, BUT ALSO, YOU
KNOW, WAYS WE CAN BROADEN OUR
PORTFOLIO IN THE WAY YOU
SUGGESTED.
>> YEAH, ABSOLUTELY, LEWIS.
I BELIEVE IT WAS APHA THAT
INVITED LISA IZONI AND ALISON
CERNICH TO GIVE A WEBINAR A
COUPLE MONTHS AGO ABOUT
INTERSECTION OF DISABILITY.
YES, I THINK THAT'S AN AREA
WHERE WE NEED TO DO MORE.
WE'VE PUT OUT TRADITIONAL I
WOULD SAY DISSEMINATION AND
IMPLEMENTATION REQUESTS FOR
APPLICATIONS, WE HAVEN'T GOTTEN
A LOT.
BUT I THINK WE'RE IN A DIFFERENT
PLACE AND WE'RE USING DIFFERENT
LANGUAGES, AND WE'RE
CONCEPTUALIZING DIFFERENT.
I WOULD BE VERY, VERY SURPRISED
IF WE DIDN'T HAVE A THEME THAT
HITS THOSE.
JOSE AND THEN SHERRY.
IF YOU WANT TO PUT YOUR THINGS
UP SO WE CAN SEE.
>> SO, SHOULD I GO FIRST?
THANK YOU FOR THAT PRESENTATION.
A COUPLE THOUGHTS.
WE HAVE THE RFI, BUT SO A
SUGGESTION WOULD BE IN ADDITION
TO THAT, IS THE POSSIBILITY OF
HAVING NO ONE CONFERENCE BUT
HAVE WHERE, YOU KNOW, HAVE SOME
LOCAL CONFERENCES WHERE YOU CAN
INCREASE PARTICIPATION THAN JUST
SELECT PEOPLE.
THAT'S WHY.
AND SECOND, YOU KNOW, THE
CONFERENCE SO WE STILL HAVE
POSSIBILITY FOR PEOPLE TO BRING
IDEAS, MAYBE AT THAT PLACE WE
CAN REFINE AND COME WITH SOME
THEMES.
JUST TO BE OPEN.
THE SECOND COMMENT IS REGARDING,
YOU KNOW, POTENTIAL NEW THEMES,
RIGHT?
I WANT TO BRING ONE PARTICULAR
TOPIC BECAUSE I'VE BEEN WORKING
ON THIS WHICH IS BRAIN-COMPUTER
INTERFACE.
DO WE KNOW HOW MANY PEOPLE HAVE
BEEN IMPLANTED TO DATE, HOW LONG
THE ELECTRODES LAST, WHAT ARE
THE GAPS?
AND GIVEN ADVANCEMENTS, EVEN NEW
THINGS OUT THERE, AND GOAL FOR
REHAB, RIGHT, THAT MAY BE ONE
OPPORTUNITY TO REALLY PUSH THIS
FIELD.
SO THAT'S ONE THEME I WOULD --
YOU KNOW.
>> I WILL SAY THAT BECAUSE THIS
IS GOING TO BE ACROSS NIH, IT'S
GOING TO BE -- THE THEMES ARE
GOING TO BE DISEASE AGNOSTIC.
NOW, WHETHER THERE'S A BULLET
UNDERNEATH THAT IS HITTING ON
THAT IS CERTAINLY SOMETHING THAT
COULD BE --
>> YEAH.
>> YEAH, OKAY.
SHERRY?
>> YES, HELLO.
SORRY I CAN'T BE THERE IN PERSON
TODAY.
THERESA, THANK YOU FOR THE
REALLY HELPFUL PRESENTATION AND
FORWARD LOOK AT THIS PROCESS.
JUST A COUPLE THOUGHTS TO PUT IN
OUR HEADS FOR NOW TO THINK ABOUT
AS IT MOVES FORWARD.
FIRST WOULD BE THINKING ABOUT
HOW TO USE THIS TWO-YEAR
TIMELINE AND THINKING ABOUT
ADVANCE PLANNING, WITH REGARD TO
TARGETED ENGAGEMENT WITH SOME OF
THE BETTER KNOWN AND WELL
ORGANIZED COMMUNITY ADVOCACY
GROUPS, LIKE UNITED SPINAL,
UNITED CP, AND SOUNDS LIKE
THERE'S IDEAS ABOUT CREATIVE
MEETING FORMATS, COULD THERE BE
A ROUNDTABLE OF LEADERS FROM THE
ORGANIZATIONS, FOR EXAMPLE, ONCE
THE PLAN IS IN THE SECOND RFI
PERIOD OR SOMETHING OF THE SORT
SO THAT GROUP, THOSE LEADERS CAN
REALLY OFFER THEIR LIVED
EXPERIENCE WHICH I THINK WOULD
BE REALLY RICH WAY OF INFORMING
OVERALL PLAN.
AND THEN THE OTHER THOUGHT TO
PUT FORWARD FOR CONSIDERATION
WOULD BE TO THINK ABOUT WITH
SOME OF THESE BIG MILESTONES
THAT HAVE BEEN REACHED, FOR
EXAMPLE, DESIGNATION AS A HEALTH
DISPARITIES POPULATION, SO
INCREDIBLE AND SO
GROUND-BREAKING, THINKING ABOUT,
YOU KNOW, COULD INNOVATIVE
CONFERENCE FORMAT OR AN EVENT AT
DIFFERENT TIME BE BROUGHT
TOGETHER TO BRING TOGETHER TRUE
THOUGHT LEADERS AND HEALTH
DISPARITIES RESEARCH WITH TRUE
THOUGHT LEADERS IN REHAB TO
THINK ABOUT WHERE DO WE FIND
SYNERGIES IN A POWERFUL WAY.
SO A COUPLE IDEAS FOR THE
CONFERENCE.
I MIGHT BE ROLLING OFF OR
CLEARLY I WOULD SIGN UP FOR THE
PLANNING GROUP.
>> WE'LL TAKE PEOPLE ROLLING OFF
IF THEY STILL WANT TO HELP.
THANK YOU, CHERI, FOR THE
SUGGESTIONS.
>> THANKS, THERESA.
>> KATHLEEN?
>> THANK YOU.
YES, I LIKE THIS IDEA HAVING
SMALL MEETINGS LOCALLY BECAUSE
YOU GET DIFFERENT DISCUSSION IN
PERSON.
I THINK YOU DO GET DIFFERENT
DISCUSSION IN PERSON AS WE'VE
ALL LEARNED FROM COVID.
BUT I ALSO -- ANOTHER -- A
COUPLE IDEAS.
I THINK IF I COULD PUT ANY
THEMES FORWARD, SOME KIND OF
FOCUS ON HOW YOU CHANGE
BEHAVIORS, NOT A NEW IDEA BUT A
BIG PROBLEM, WE MIGHT
INTERVENTIONS THAT WORK, HOW DO
YOU GET PEOPLE TO DO THEM NOT
JUST DURING THE STUDY BUT KEEP
DOING THEM, THAT KIND OF IDEA.
THIS WOULD ALLOW US TO ADDRESS
MODIFIABLE FACTORS, SOCIAL
DETERMINANTS OF HEALTH, THAT
KIND OF THING.
ANOTHER AREA THAT I THINK I'VE
HEARD A LOT OF ISSUES, WE HAVE
RESEARCH THAT THE STUDIES ARE
OFTEN VERY SMALL.
DIFFICULT TO GET FUNDING.
IT'S HARD TO GET PARTICIPANTS IN
THESE VARIOUS SPECIFIC AREAS
THAT WE'RE LOOKING FOR, IF WE
COULD FOCUS ON CREATIVE DESIGNS
OR DESIGNS THAT ALLOW PEOPLE TO
WORK TOGETHER COLLABORATIVELY
FROM AFAR, WITH LIMITED FUNDING,
AND I THINK FROM WHAT I
UNDERSTAND THERE ARE SOME
POSSIBILITIES IN THAT AREA.
AND LAST, I WOULD BE INTERESTED
IN BEING PART OF THE RESEARCH
PLAN WORK GROUP.
>> SO, THANK YOU.
DR. BIANCHI MENTIONED JANE
SIMONI, NEW OBSSR, I HAVE MET
WITH HER IN PERSON TO SAY THIS
IS PERSON FOR REHAB.
THEY HAVE SEVERAL PEOPLE ON
STAFF WHO ARE WORKING IN
DISABILITY AND BEHAVIORAL AND
SOCIAL SCIENCE.
WE'RE WORKING THAT WAY.
I TOTALLY AGREE.
AND, YEAH, I DON'T KNOW HOW
WE'LL GET AROUND NOT TALKING
ABOUT CLINICAL TRIAL DESIGN SO
YOU'RE RIGHT ON.
>> I AGREE WITH EVERYTHING I'VE
HEARD AND WANT TO JUST EXPAND ON
THIS IDEA WHO ELSE SHOULD BE AT
THE TABLE IN PLANNING.
I KEEP THINKING ABOUT
IMPLEMENTATION SCIENTISTS, NOT
RESEARCH.
WHAT CAN WE LEARN FROM THEM WHAT
MIGHT MOVE THE FIELD FORWARD IN
GETTING EVIDENCE-BASED
INTERVENTIONS DEVELOPED INTO
PRACTICE BECAUSE WE KNOW IF YOU
DESIGN WITH IMPLEMENTATION FOCUS
ON A CLINICAL TRIAL, IT'S MORE
LIKELY IT WILL BE MORE RELEVANT
TO YOUR COMMUNITY AND I THINK
THAT REALLY DOES GO ALONG WITH
THE OTHER THEME WE'RE HEARING,
ANOTHER THEME, ONE OF MANY,
AROUND GETTING THE RIGHT PEOPLE
AT THE TABLE FROM PEOPLE WHO
REPRESENT THE GROUPS THAT WE'RE
DOING RESEARCH ON SO GETTING
ADVOCATES, ALL SORTS OF PEOPLE
WHO HAVE INTEREST IN WHAT WE DO
AND WILL BE USING WHAT WE DO IN
THEIR CLINICAL PRACTICE OR IN
THEIR LIVES.
ONE OTHER THING TO MENTION I'VE
BEEN PART OF TWO WORK GROUPS.
YOU MAKE IT EASY, THERESA, WITH
THE TEAM, IT'S A FUN WAY TO GET
TO KNOW A SMALLER GROUP IN THE
PEOPLE IN THE BOARD, AT NIH,
IT'S NOT A HEAVY LIFT TO ATTEND.
I'LL PUT THAT PLUG IN FOR YOU.
>> FIRST OF ALL, SINCE WE KNOW
EACH OTHER FAIRLY WELL, YOU CAN
PLACE ME WHERE YOU THINK I'M
GOING TO BE OF MOST VALUE, I'LL
PUT IT THAT WAY.
AS THE THEMES GEL AND THINGS GET
FORMED, I'M HAPPY TO ASSIST WITH
PEOPLE, IDEAS, WHO COULD FIT
THOSE DIFFERENT KNOWLEDGE BASE
SME TYPES BECAUSE OF THE SPACE
THAT I'M IN AND THE RESEARCH
THAT V.A. COVERS SO I'M SURE I
CAN THINK OF PEOPLE TO CONSIDER
IN EVERY DOMAIN FOR YOU.
SO YEAH.
>> THIS SOUNDS VERY MAYBE OLD
SCHOOL BUT THE ABILITY TO
TRANSLATE OR GENERALIZE FROM THE
CLINIC TO THE COMMUNITY I STILL
THINK IT'S THE MAJOR PERSISTENT
PROBLEM THAT WE HAVE IN MANY
AREAS OF REHABILITATION.
THE OTHER THING, WHAT KATHY WAS
SEEING, RELATIONSHIP BETWEEN
LEARNING MECHANISMS AND RESPONSE
TO REHABILITATION IS SOMETHING
THAT'S, YOU KNOW, I THINK
CRITICALLY IMPORTANT.
>> THANK YOU.
MICHELLE?
>> YEAH, I WANTED TO THROW IN A
THEME.
YOU MENTIONED IT BUT I'VE BEEN
DOING A LOT OF WORK IN HIV AND
INFECTIOUS DISEASE AND HOW THAT
CAUSES NON-TRAUMATIC BRAIN
INJURY.
AND I THINK SOMETHING ALONG
THIS, AND THEN WITH COVID-19
COMING UP, TALKING ABOUT LONG
COVID, SOMETHING DEALING WITH
INTERSECTION BETWEEN INFECTIOUS
DISEASE AND REHABILITATION, AND
THE NEED, BECAUSE PEOPLE WITH
HIV THEY DON'T REALLY ASSIGN
THEM FOR REHAB.
AND SO, YOU KNOW, THERE'S A LOT
OF NEGLECT OF THESE GROUPS
BECAUSE THE LITERATURE IS NOT
THERE.
>> JUST WANTED TO ADD ONE MORE
POINT.
IF YOU NOTICE, WE'RE THE LARGEST
FUNDER ACROSS I.C., AND SO HAPPY
TO PLAY THAT ROLE.
BUT OF COURSE WE LOOK UP TO NCMR
BECAUSE THEY ARE THE BANNER
HOLDER FOR REHAB RESEARCH.
AND THEY SET THE TONE AND
PROVIDE INSPIRATION, AND PAY FOR
THOSE PROJECTS.
I'M LISTENING TO ALL THESE AND
I'M SO PLEASED TO HEAR THERE'S
COHESIVE THINGS FOR THE BANNER
AND NCMR, BE MINDFUL THE
IMPLEMENTATION IN OUR REHAB IS
IN THE HANDS OF THE PT AND OT,
THE VEHICLE TO DELIVER MANY
BEHAVIORAL INTERVENTION UNLIKE
YOU DISPENSE A PILL, SOMETHING
LIKE THAT.
SO THIS IS CRITICAL.
PART OF THAT IS MORE LEARNING,
ALSO DEVICE, CONNECT WITH
COMMUNITY, MANY OF YOU SAID.
SO THAT IS SOMETHING THAT THAT
THEME IS VERY, VERY DIFFICULT
FOR INSTITUTE LIKE US TO BE ON
THE TOP, EVEN THOUGH IT'S VERY
IMPORTANT.
SO, TO ME, THIS IS WHERE WE WILL
LOOK UP TO YOU FOLKS, HOW TO GET
THAT, WITH OBSSR, HIGHLY
RELEVANT REALLY TALKING ABOUT
NEURAL REHAB, BRAIN BEHAVIOR, SO
ALL THIS IS HIGHLY RELEVANT AND
I'M SO PLEASED TO HEAR ALL THESE
COMING TOGETHER.
THE QUESTION IS HOW WE PUT THIS
INTO RESEARCH PLAN WITH SOME
METHODOLOGY AS YOU REFERRED TO.
SO LOOKING FORWARD TO IT.
>> DAUPHINE IS BEING MODEST.
THANK YOU, APPRECIATE IT.
>> THANKS, EVERYBODY, FOR THE
THOUGHTFUL COMMENTS AND
DISCUSSION.
BEFORE WE MOVE TO THE NEXT
SECTION, I'D LIKE TO WELCOME
CHUCK, WHO JOINED US ONLINE, IF
YOU COULD SAY HELLO AND
INTRODUCE YOURSELF.
>> LET'S SEE IF IT WORKS.
GOOD MORNING.
GOOD AFTERNOON, DEPENDING WHERE
YOU'RE AT.
THIS IS CHUCK WASHBAUGA,
ORTHOPEDIC DIRECTOR AT NIAMS.
>> WE'RE GOING TO MOVE ON AND
GET THE REPORT FROM THE TRAINING
WORKING GROUP.
MICHELLE JOHNSON IS ASSOCIATE
PROFESSOR OF PHYSICAL MEDICINE
REHABILITATION AT THE UNIVERSITY
OF PENNSYLVANIA, PERELMAN SCHOOL
OF MEDICINE.
SHE'S DIRECTOR OF THE
REHABILITATION ROBOTICS LAB, AND
HER CURRENT RESEARCH FOCUSES ON
USING ROBOTICS TO UNDERSTAND
UPPER EXTREMITY DYSFUNCTION, AND
RECOVERY, AFTER BRAIN INJURY.
AND SHE HAS GRACIOUSLY AGREED TO
PRESENT THE WORKING GROUP
FINDINGS.
THANK YOU, MICHELLE.
>> THANK YOU, BARBARA.
LET ME PUT THESE A LITTLE
CLOSER.
SO I WOULD ECHO WHAT DON SAID
ABOUT THE NOT VERY HEAVY LIFTING
BEING INVOLVED IN THE WORKING
GROUP, THAT THERESA AND HER
GROUP DID MOST OF THE LIFTING.
IT WAS A PLEASURE TO BE PART OF
THE WORKING GROUP CONVENED TO
CONSIDER CHALLENGES IN TRAINING
AND CAREER DEVELOPMENT.
WHAT BEGAN, YOU CAN GO, NEXT
SLIDE, I KEEP FORGETTING, TO
BEGIN WITH BACKGROUND AND
METHODS, NEXT SLIDE PLEASE.
SO, THE ISSUE CAME UP I THINK IN
THE LAST MEETING WHERE WE BEGAN
TO TALK ABOUT WHAT WAS LIKE THE
HISTORY AND THAT TRAINING AND
CAREER DEVELOPMENT SUPPORT FOR
NIH REHABILITATION, SUPPORTS
NCMRR'S VISION, DOING A LOT OF
HEAVY LIFTING, 12 TO 20% OF
THEIR BUDGET WAS FOR THE LAST 30
YEARS IN THIS TRAINING AND
CAREER DEVELOPMENT.
AND THAT ON SOME LEVEL MAYBE
OVERFUNDING WITH RESPECT TO
OTHER NIH ORGANIZATIONS THAT
WERE ESSENTIALLY AROUND 5 TO 6%.
AND NCMRR TRAINEES ARE OFTEN
FUNDED SUBSEQUENTLY BY OTHERS.
SO THE QUESTION THEN, NEXT SLIDE
PLEASE, BUT THEN IN 2021 AND
2022 KIND OF NOTICING SOME
CHANGES IN THE LANDSCAPE THAT
MIGHT AFFECT WHAT WAS HAPPENING
AT NCMRR, SO FIRST WAS NCMRR'S
SUNSET FOUR INSTITUTIONAL K12
PROGRAMS, AND THEY ESSENTIALLY
EXPECTED THAT THEY WOULD THEN
APPLY FOR INDIVIDUAL K AWARDS.
SO THEN ALSO NOTICING A SHORTAGE
OF AVAILABLE POSTDOCS IN ORDER
TO FILL THE SLOTS IN THE U.S.
AND THAT THERE WAS ALSO ON MANY
CAMPUSES AND MANY OF YOU HAVE
EXPERIENCED IT, THE GROWING
LABOR MOVEMENT, A LOT OF
UNIONIZING OF GRADUATE STUDENTS
AND POSTDOC RESEARCHERS, AND
DEMANDING MORE MONEY FOR
RESEARCH, ET CETERA.
SO AS A RESULT, WHAT WE WERE
SEEING WAS A DROP IN THE
PROPORTION OF THE BUDGET THAT
SUPPORTED TRAINING AND CAREER
DEVELOPMENT, AT NCMRR, AND THAT
WAS COMING CLOSER TO WHAT
REGULAR NIH WAS SPENDING WHICH
WAS ABOUT 6%.
NEXT SLIDE PLEASE.
SO, OUR WORKING GROUP WAS
CHARGED IN MAY 2023 TO DISCUSS
THIS ISSUE.
SO WE HAD THREE PRIMARY CHARGES.
FIRST, WE WANTED TO REVIEW THE
CURRENT TRAINING AND CAREER
DEVELOPMENT LANDSCAPE AT NIH AND
THE OTHER AGENCIES SUPPORTING
REHAB RESEARCH.
WE WERE ALSO HAVING THE GOAL OF
ASSESSING CURRENT TRAINING AND
CAREER DEVELOPMENT NEEDS FOR THE
REHABILITATION COMMUNITY.
AND TO DEVELOP ANY STRATEGIC
RECOMMENDATIONS TO ADDRESS THE
GAPS FOR CONSIDERATION BY THE
NCMRR DIRECTORATE.
AND SO, NEXT SLIDE PLEASE.
SO, WE IN TERMS OF METHODS AND
DATA REVIEW JUST TO TALK ABOUT
WHAT WE DID, SO WE REVIEWED ALL
THE MECHANISMS, THERESA AND
GROUP BROUGHT TO US, TRENDS THAT
WERE SEEN OVER THE PAST SEVERAL
YEARS IN TERMS OF THE NUMBER OF
APPLICANTS, WHERE DID THEY GO,
HOW MANY K AWARDEES ENDED UP
BECOMING INDEPENDENT P.I.s,
HOW MANY OF THEM ENDED UP WITH
R01s, WE ALSO TALKED ABOUT --
WE HAD INPUT FROM NIDILRR AND
V.A. DATA, SOME OF THEIR
PERSONNEL CAME AND GAVE
PRESENTATIONS ABOUT THEIR
TRAINING AND CAREER DEVELOPMENT
MECHANISMS, SO THIS WAS HELPFUL
TO UNDERSTAND WHERE NCMRR WAS
SITUATED IN THE -- WITH RESPECT
TO TRAINING AND CAREER
DEVELOPMENT.
NEXT SLIDE PLEASE.
SO, JUST TO BECOME -- PUT
EVERYONE IN THE SAME SPACE, IN
THAT THE TRAINING AND CAREER
DEVELOPMENT MECHANISMS THAT WERE
SUPPORTED ARE THE FOLLOWING T32
AWARDS, FOR PRE-DOCTORAL AND
POSTDOCTORAL FELLOWS.
I WANT TO SAY THEY ARE FOR MORE
U.S. CITIZENS AND PERMANENT
RESIDENCY SO THE REASON I SAY
THAT, THAT WILL BRING UP ONE OF
THE POSSIBLE ISSUES THAT WE
TALKED ABOUT.
THEN THERE ARE INDIVIDUAL
FELLOWSHIPS THAT PEOPLE CAN
OBTAIN, THESE ARE THE F31s,
FOR PRE-DOCTORAL AND
POSTDOCTORAL FELLOWS, NATIONAL
K12 PROGRAMS PRIMARILY FOR
CLINICIAN SCIENTISTS, TENURE
TRACK POSITIONS, REMEMBER SOME
OF THESE WERE SUNSETTED.
INDIVIDUAL MENTORED K AWARDS,
TENURE TRACK SCIENTISTS IN
REHAB.
R25 PROGRAMS TO TRAIN
GRANTSMANSHIP, DATA SCIENCE,
CREATE COHORTS, ENGAGE
ENGINEERING UNDERGRADUATES AND
OTHERS.
NEXT SLIDE PLEASE.
SO, WHAT WE DID WAS WE KIND OF
CONDUCTED AN ASSESSMENT OF
TRAINING PROGRAMS, TO GIVE A
LITTLE BIT OF SOME OF THE THINGS
WE THOUGHT OF.
THAT WE SAW THERE WERE BARRIERS
AND SUPPORTS TO SUCCESSFUL
TRAINING PROGRAMS.
THERE WAS A NEED TO INCREASE
DIVERSITY IN THE TRAINING POOL.
THERE WAS A LACK OF CAREERS
OUTSIDE OF ACADEMIA.
WE TALKED ABOUT A LOT OF THESE
TRAINING PROGRAMS, THEY REWARD
THE FACT THAT WE WERE ABLE TO
BRING PEOPLE INTO ACADEMIA BUT A
LOT OF NEWEST COHORTS OF
TRAINEES DON'T ALWAYS WANT TO GO
INTO ACADEMIA BUT THERE'S NO WAY
TO MEASURE OR TRAIN THEM FOR
THAT.
WE SAW CHALLENGES IN COMMUNITY
OF SUPPORT FOR OUR TRANEEES,
LIMITATIONS IN ELIGIBILITY
CRITERIA IN TERMS OF YOU HAVE TO
BE A U.S. CITIZEN OR PERMANENT
RESIDENT, WE COULDN'T TRAINING
STUDENTS THAT ARE FOREIGN
TRAINEES, WE HAVE A LOT IN OUR
UNIVERSITIES SO THEY CAN'T TAKE
ADVANTAGE OF THESE MECHANISMS.
NEED FOR ADDITIONAL SUPPORT TO
RECRUIT AND TRAIN TRAINEES WITH
DISABILITIES, THAT WAS A GROUP
THAT EVEN THOUGH THERE WERE
DIVERSITY SUPPLEMENTS THAT WE
DIDN'T HAVE A LOT OF THAT GROUP
OF PEOPLE WITH TRAINEES WITH
DISABILITY ACTUALLY TAKING
ADVANTAGE OF THESE.
AND THEN AS WELL, THE NEED TO
SUPPORT MENTORS' TIME,
PARTICULARLY MINORITIZED
P.I.s, IN THAT PART OF SUCCESS
HINGES ON AVAILABILITY, OFTEN
TIMES MENTORS ARE NOT
NECESSARILY REWARDED TO TAKE THE
TIME TO DO THE TRAINING.
NEXT SLIDE PLEASE.
SO, WE'LL TALK ABOUT SOME KEY
FINDINGS.
FIRST, WE NOTICED THAT NCMRR IS
INDEED THE LEADER AND MAIN
FUNDER OF REHABILITATION,
TRAINING AND CAREER AWARDS AT
NIH, FROM 1992 TO 2022, 25% OF
OUR AWARDS WERE MADE BY NCMRR.
I THINK THIS IS IMPORTANT TO
NOTE WE'RE DOING A LOT ALREADY.
FROM 1992 TO 2022 THE AVERAGE
PORTION OF BUDGET WAS ABOUT 15%.
AND THEN REMEMBER TO COMPARE
THAT TO WHAT NIH AVERAGES, WHICH
IS ABOUT 6%.
ANOTHER BIG FINDING IS THE
APPLICATIONS FOR NCMRR T32s
HAVE DROPPED SIGNIFICANTLY IN
THE PAST TEN YEARS, WHILE
INDIVIDUAL FELLOWSHIP
APPLICATIONS HAVE INCREASED.
AND JUST TO REMIND YOU T32s
ARE A BIG TRAINING OPPORTUNITY
FOR A LOT OF MORE CITIZENS AND
PERMANENT RESIDENCY BUT THERE
ARE BIG TRAINING OPPORTUNITIES
FOR REHAB.
VERY FEW K99 APPLICATIONS ARE
SUBMITTED TO OR FUNDED BY NCMRR.
WE TALKED ABOUT WHETHER THAT WAS
BECAUSE MAYBE YOU'RE NOT GETTING
THE WORD OUT ENOUGH.
THERE'S A LOT OF REASONS FOR
POSSIBILITY OF WHY THESE DROPS
IN FUNDING ARE BEING NOTICED.
WE ALSO TALKED ABOUT THE
UNADJUSTED DOLLAR AMOUNT FOR
NCMRR T32 AND F SUPPORT CON
CONSTANT.
IN 2022 WE SAW NCMRR SUPPORT FOR
INDEPENDENT Ks DID NOT OFFSET
AMOUNT PREVIOUSLY SPENT ON THE
K12s BECAUSE THEY SUNSETTED
BUT DIDN'T NECESSARILY RAISE THE
FUNDING FOR NEW Ks.
AND NCMRR K AWARDEES WHO
RECEIVED BOTH K12s AND
INDIVIDUAL Ks WERE MORE LIKELY
TO GET R01s WITHIN TEN YEARS
OF EITHER GROUP ALONE, SO ONE OF
THE KEY THINGS TO RECOGNIZE IS
THAT WE SUNSETTED K12 BUT THIS
WAS A MECHANISM THAT WAS
RESULTING IN INDEPENDENT
P.I.s.
NEXT SLIDE.
SO, THE GROUP CAME TOGETHER AND
WE WERE ABLE TO COME UP WITH
SOME RECOMMENDATIONS.
SO RECOMMENDATION NUMBER 1,
ESSENTIALLY WHAT WE'RE THINKING
IS NCMRR SHOULD STILL CONTINUE
TO LEAD IN TERMS OF FUNDING,
TRAINING, CAREER DEVELOPMENT
AMONG NIH.
AND WE WANT TO GET ABOVE THE 5%.
THAT'S TYPICAL.
RECOMMENDING BECAUSE THE FIELD
HAS MATURED WE MAY NOT NEED TO
GET LIKE SIGNIFICANTLY ABOVE 10%
AS WE WERE DOING BUT THAT WE
SHOULD RECOMMEND 8 TO 10% OF THE
NCMRR BUDGET TO GO TO Fs,
Ks, T32s MECHANISM, NOT THE
RATE THEY WERE FUNDING BEFORE,
PRIMARILY BECAUSE THERE'S BEEN
CHANGES AND INCREASES IN REHAB
THAT WE'VE SEEN.
NEXT SLIDE PLEASE.
SOS SECOND RECOMMENDATION WAS
THAT THE NABMRR SHOULD RECEIVE
REGULAR UPDATES, OUR GROUP HERE,
ABOUT WHAT'S HAPPENING IN
TRAINING AND CAREER LANDSCAPE
AND WE'RE PARTICULARLY
INTERESTED IN KEEPING OUR
FINGERS ON TRENDS OVER TIME
WANTING TO RECOGNIZE AND SUPPORT
SUCCESSFUL CAREERS IN
NON-TRADITIONAL RESEARCH
PATHWAYS THAT WE WANT TO
BASICALLY -- WE'RE ASKING NCMRR
TO TRY TO THINK ABOUT WAYS WE
CAN SUPPORT THOSE WHO DON'T
NECESSARILY WANT TO END UP IN
ACADEMIA WHICH ARE MAYBE AT
LEAST 50% OF TRAINEES RIGHT NOW
ARE OPTING FOR CAREERS OUTSIDE
OF ACADEMIA.
AND THAT WE WANTED REGULAR
PUBLIC REPORTING AND WE HOPE
THAT WOULD ALSO KEEP THE FIELD
INFORMED SO THAT THEY MIGHT
RESPOND TO CHANGES THAT WE'RE
SEEING OR TRENDS WE'RE SEEING
FASTER.
NEXT SLIDE PLEASE.
RECOMMENDATION 3 WE WANT TO
INCREASE EQUITABLE OUTREACH TO
INFORM TRAINEES AND MENTORS OF
RESOURCES AVAILABLE TO INCREASE
BOTH THE NUMBER AND QUALITY OF
TRAINEE APPLICATIONS.
I THINK WE SAW THAT, YOU KNOW,
OUR T32s DROPPING OFF BECAUSE
OF INFORMATION, PEOPLE NOT
APPLYING TO Ks OR SOME PEOPLE
APPLYING TO Ks, SOME
MINORITIZED GROUPS OR DISABILITY
TRAINEES ARE NOT APPLYING.
WE NEED TO GET THE WORD OUT IN
ORDER TO MAKE SURE THAT WE HAVE
AN EQUITABLE -- OUTREACH IS
EQUITABLE.
SOME PEOPLE KNOW, SOME PEOPLE
DON'T, WHAT'S GOING ON IN TERMS
OF HOW WE'RE REACHING THE
PUBLIC.
RECOMMENDATION 4, WE BELIEVE
THAT GIVEN WHAT WE SAW IN SOME
TRENDS THAT WE SHOULD REINSTATE
THE K12 PROGRAMS AND THEY WERE
GREAT PROGRAMS THAT WERE
WORKING, AND THAT WE THINK THAT
THE COHORTS CREATED BY THE K12
ARE CRUCIAL TO THE SUSTAINED
GROWTH OF THE FIELD AND THAT
MAYBE SUNSETTING THEM WAS A BIT
PREMATURE.
NEXT SLIDE PLEASE.
SO, RECOMMENDATION NUMBER 5 IS
3% OF DIVERSITY SUPPLEMENTS ARE
AWARDED TO PEOPLE WITH
DISABILITIES.
NOT HAPPENING AT FREQUENCY WE
DESIRE SO WE'RE RECOMMENDING WE
NEED TO ADVERTISE MORE,
PROVIDE -- WE'RE SAYING WE WANT
TO PROVIDE THESE DIVERSITY
SUPPLEMENTS, BUT WE NEED TO GET
THE WORD OUT, TO MAKE SURE THAT
TRAINEES WITH DISABILITIES HAVE
THE INFORMATION NEEDED TO BE
ABLE TO ACCESS THESE DIVERSITY
SUPPLEMENTS.
AND SINCE DIVERSITY SUPPLEMENTS
ARE OFTEN TRIGGERED BY FACULTY
WE NEED TO MAKE SURE THAT
MENTORS HAVE THE INFORMATION
NEEDED TO BE ABLE TO RECRUIT
DIVERTS TRAINEES AND TRAINEES
WITH DISABILITIES.
NEXT SLIDE.
RECOMMENDATION NUMBER 6 IS THAT
WE SHOULD BE WORKING NCMRR
SHOULD BE WORKING WITH OFFICE OF
HEALTH AND EQUITY AT NICHD TO
INCREASE CAREER SUPPORT TO
MINORITIZED POPULATIONS, AND
THIS KIND OF IS -- THIS
RECOMMENDATION GOES WITH
RECOMMENDATION NUMBER 5 IN SOME
SENSE, THE IDEA IS THAT DIVERSE
PERSPECTIVES AND TALENTS ARE
NEEDED TO ADDRESS THE MISSION OF
NCMRR, AND THAT WE WANT TO PUSH
THE DEFINITION OF DIVERSITY TO
INCLUDE RACE/ETHNICITY,
GEOGRAPHIC LOCATION,
DISADVANTAGED POPULATION AND LOW
SOCIOECONOMIC STATUS, RURAL
POPULATIONS, SEX AND GENDER
MINORITIES, PEOPLE WITH
DISABILITIES.
I THINK IN WORKING CLOSER WITH
THE OFFICE OF HEALTH AND EQUITY,
MAYBE BE ABLE TO RAISE THE
AMOUNT OF PEOPLE WHO ARE
PARTICIPATING THAT FIT THIS
DIVERSE CATEGORY.
NEXT SLIDE PLEASE.
SO IN CONCLUSION, I WANT TO
THANK EVERYONE IN THE RESEARCH
GROUP.
OF COURSE I WANT TO REALLY THANK
THERESA AND HER GROUP.
THEY WERE THE MAIN HEAVY
LIFTERS.
IT WAS A PLEASURE TO WORK WITH,
YOU KNOW, THE FOLKS LISTED HERE,
BARBARA, DAWN, ROBERT, KRISTIN,
FRANCISCO, PATRICIA.
AND THERESA, RALPH, ALICIA.
YEAH, IT WAS ACTUALLY REALLY
GREAT OPPORTUNITY TO GET TO KNOW
FOLKS IN THE WORKING GROUP
BETTER AND ALSO FIND OUT MORE
ABOUT WHAT NCMRR IS DOING AND
HOW WE CAN HELP AND HOPEFULLY
THIS -- WE CAN STOP THERE AND
TAKE QUESTIONS.
>> THANKS, MICHELLE.
YES, OPENING IT UP TO THE
BROADER GROUP FOR YOUR THOUGHTS,
INPUT.
OTHER CONSIDERATION.
>> I WANTED TO ASK QUESTIONS.
VERY EARLY ACTUALLY BEFORE YOU
HAVE RECOMMENDATION, YEAH, RIGHT
THERE.
>> THIS ONE.
>> SO SINCE THIS IS AN ADVISORY
BOARD, REALLY POSE THESE
QUESTIONS FOR YOU, WOULD YOU BE
HAPPY, SAY, AND CMR TO BE THE
LEADER BUT NOT MAJOR FUNDER,
LET'S SAY, I.C.s WILL PICK UP
THE TAB, REDUCE TO LET'S SAY
10%, HAVE YOU LOOKED INTO THAT,
WOULD THAT BE GOOD FOR YOU
MOVING FORWARD?
IF YOU LOOK AT OUR NINDS, WE
ACTUALLY -- YOU'LL BE SURPRISED
HOW MUCH INCREASE WE HAVE IN
THOSE AREAS.
THAT'S KIND OF JUST TO LET YOU
KNOW.
AND THE SECOND QUESTION IS
T32,ED SAME THING, SAME VEIN,
LOOKING AT OTHER I.C.s.
RALPH CAN CALL FOR TWO DECADES
FOR THIS CENTER REALLY FOCUSING
ON CAPACITY BUILDING.
AND WE'RE TRYING TO BUILD
THINGS.
WE EXPECT THINGS TO SUCCESS SEED
IN INVESTIGATOR INITIATED PEER
REVIEW, AMAZINGLY THEY ARE DOING
SO WELL NOW.
SO IF WE LEAVE THEM ALONE AND
WE'LL SHIFT TO OTHER THINGS,
WE'LL BUILD NEW THINGS, SO I
THINK THAT PROBABLY WOULD HAVE
TO TAKE THAT INTO CONSIDERATION
AS WELL.
FOR K99, IF YOU LOOK AT NINDS,
WE HAVE TREMENDOUS SUCCESSFUL K
99 FOLKS DURING NEUROIMAGING
PRETTY MUCH INTERFACE, LOTS OF
THESE COULD CATEGORIZE AS REHAB
AND I WILL SAY THAT WOULD BE
GOOD TO LOOK INTO THAT AS WELL.
IT IS INTERESTING, THERE'S LOTS
OF INTERNAL DISCUSSION ABOUT
WHAT KIND OF Ks TO SUNSET,
WHAT KIND OF Ks, SUN SET PART
OF IT, K12 IN OUR INSTITUTE BUT
RECENTLY PUT IN PLACE FOR K12
FOR NEUROSURGEONS, JUSTIFYING
PROGRAMMATIC MEANS.
IT MAY NOT BE ONE SIZE FITS ALL.
QUESTION IS WHAT DO WE EXPECT
FOR THIS CENTER, FOR THIS
CENTER, TO CONTINUE TO BUILD
CAPACITY FOR WHAT AREA FOR WHAT
PURPOSE, TOGETHER, WITH THE
RESOURCES ACROSS NIH, YOU KNOW,
WOULD BE NEEDED SO THAT WOULD BE
KIND OF LANDSCAPE I'M LOOKING
AT.
JUST FOR YOUR, YOU KNOW,
CONSIDERATION.
>> I JUST WANT TO SAY I DON'T
WANT TO HAVE TO BE THE ONLY
PERSON THAT'S ANSWERING BECAUSE
THERE'S A WHOLE WORK GROUP GOING
ON.
YOU ASKED THE QUESTION, THE
FIRST ONE I WANTED TO RESPOND TO
IS YOU MAKE A GREAT POINT IN
THAT WE HAVE -- NCMRR IS
CONSIDERED RIGHT NOW THE LEADER
IN SUPPORTING TRAINING AND
CAREER DEVELOPMENT, AND I THINK
IT WAS BROUGHT UP THAT, YOU
KNOW, A LOT OF THE WORK WAS DONE
BY OTHER, YOU KNOW, OTHER
AGENCIES AS WELL.
SO, YOUR POINT IS THAT IF WE
DROP TO 10% AND WE'RE NO LONGER
THE MAIN LEADERS, DOES THAT
AFFECT OUR PORTFOLIO?
I THINK -- I DIDN'T THINK ABOUT
IT THAT WAY BUT THAT COULD BE,
YOU KNOW, THAT IS AN IMPORTANT
QUESTION.
DOES IT MATTER THAT IF WE ARE --
IF WE WANT TO RETAIN LEADERSHIP
DO WE NEED TO RETAIN THE HIGHER
FUNDING AS WELL?
THAT WAS THE FIRST ONE I WAS
THINKING ABOUT.
AND I THINK WE RECOGNIZE THAT
THERE'S GOING TO BE KIND OF LIKE
ALMOST LIKE A SINUSOIDAL STUFF
HAPPENING, MIGHT BE MORE T32s,
MORE K99s, AT LEAST THERE
MIGHT BE UPS AND DOWNS IN TERMS
OF THE FUNDING MECHANISMS BUT I
THINK WE RECOGNIZE THAT THESE
ARE IMPORTANT FUNDING MECHANISMS
AND WANT TO MAKE SURE THAT WE
CONTINUE AND THEN BECAUSE OF THE
FACT K12s WERE ACTUALLY WHEN
YOU LOOK AT THE NUMBERS THEY
WERE THE ONES THAT WERE
RESPONSIBLE FOR A LOT OF THE
INDEPENDENT P.I.s, I THINK
THAT WAS ONE REASON FOR THE
RECOMMENDATION THAT WE SHOULD
BRING THAT BACK.
THE FACT NINDS IS HAVING MORE
SUCCESS WITH K99s THAN NCMRR
MIGHT BE SOMETHING TO LOOK INTO
BUT I DON'T THINK WE'RE
RECOMMENDING TO GET RID OF K99
BUT ONE OF THE THINGS WE THOUGHT
WAS JUST GETTING THE WORD OUT
THERE WAS WHAT WAS AT THE HEART
OF SOME OF THE ISSUES THAT WE
WERE SEEING AND THAT PEOPLE
DIDN'T KNOW ABOUT THEM AND THAT
WE NEEDED TO PUT THAT OUT THERE
AGAIN, SO IF WE INCREASE
PUBLICITY MAYBE WE'LL GET
INCREASED NUMBERS.
SO THOSE WERE SOME OF THE
THOUGHTS.
BUT I WELCOME MY OTHER
COLLEAGUES TO CHIME IN.
>> I JUST WANTED TO SAY
SOMETHING AT THE LAST POINT ON
THERE THAT PEOPLE WERE K12
FUNDED, INDIVIDUAL K FUNDED
TENDED TO BE THE ONES THAT MORE
OFTEN GOT R01s.
BUT I WANT TO POINT OUT
SOMETHING WE TALKED ABOUT IN THE
GROUP.
AND THERE'S A SORT OF CONFLICT
BETWEEN THE LAST SLIDE WHERE WE
TALKED ABOUT THE IMPORTANCE OF
DIVERSITY AND GEOGRAPHICAL
INSTITUTIONAL DIVERSITY AND
THINGS LIKE THE CENTERS WHERE
THE K AWARDS ARE.
AND SO, YOU KNOW, ONE HAS TO
WONDER WHETHER THERE'S A CAUSAL
RELATIONSHIP BETWEEN K12s AND
EVENTUAL R01s, OR THE
RELATIONSHIP IS REALLY THESE
FOCAL CENTERS AND THE MENTORSHIP
THAT'S AVAILABLE THERE.
I KNOW THEY ARE NOT -- YOU KNOW,
YOU CAN'T JUST SEPARATE THESE
THINGS BUT, YOU KNOW, IT IS --
K12s HAPPEN TO BE IN CENTERS
WHERE THERE'S THIS FOCUS AND
WHERE THERE'S THIS ELITE, YOU
KNOW, MEMBERSHIP.
AND I DON'T -- ONE THING WE
TALKED ABOUT, I DON'T KNOW THAT
KEY CAME TO CONCLUSION ABOUTS
THERE A WAY TO FACILITATE A
DIASPORA OF REHABILITATION
RESEARCH AWAY FROM CENTERS AND
MORE BROADLY ACROSS INSTITUTIONS
IN THE U.S.
>> MY COMMENT WAS SIMILAR TO
WHAT BOB WAS SAYING.
THANKS, MICHELLE, FOR THAT GOOD
PRESENTATION.
I WAS READING -- THIS IS AN
UNPUBLISHED PRE-PRINT BUT THERE
WAS A PRE-PRINT TALKING ABOUT
THE TRACK RECORD OF K99 AND R00
FUNDING FROM NIH, IT DID RAISE
THE QUESTION THAT HAS ALWAYS
COME UP IN DISCUSSIONS WITH
COLLEAGUES WHEN IT COMES TO
DIVERSIFYING SCIENCE, AND WAS
MAKING -- EXPRESSING CONCERN
ABOUT I GUESS, YOU KNOW, WHO IS
GETTING K99s AND WHO IS NOT,
MORE IMPORTANTLY, NOT GETTING
K99s, INSTITUTIONAL GAPS,
THERE AND I'VE BEEN CURIOUS FROM
THE POINT OF VIEW OF DIVERSITY
AND DIVERSIFYING THE SCIENTIFIC
WORKFORCE AND OUTCOMES OF
PRINCIPAL INVESTIGATORS FOR A
LONG TIME.
AND SEEING THAT WAS CONCERNING.
I KNOW THERE ARE FOCUSED
ANNOUNCEMENTS FOR K99s FOR
PEOPLE FROM VARIOUS POPULATIONS
BUT ALSO THINKING ABOUT WAYS IN
WHICH WE CAN LEVERAGE THAT
MECHANISM TO SUPPORT STUDENTS
THAT AREN'T FROM ONE OF THE TOP,
YOU KNOW, 15, 20, 25
INSTITUTIONS IN THE COUNTRY, BUT
ARE ALSO COMING FROM SMALLER
UNIVERSITIES, HBCUs, THINGS
LIKE THAT, TO HELP BROADEN AND
DIVERSIFY THE PORTFOLIO.
I DON'T KNOW HOW MUCH YOU DUG
INTO THAT WITH WHAT YOU WERE
LOOKING AT BUT IT STRIKES ME AS
POTENTIAL WAY TO MERGE A COUPLE
DIFFERENT OF YOUR AREAS INTO ONE
THEME.
>> RALPH?
>> YEAH, I TOTALLY AGREE.
AND WE'RE ALWAYS TRYING TO
PROMOTE A BROADER NET.
EVEN THE K12 PROGRAMS, UNLIKE
SOME AT BROADER NIH, THEY ARE
NOT JUST INSTITUTIONALLY FOCUSED
BUT TRY TO CONNECT TO OTHER
INSTITUTIONS AS WELL.
AND ONE PROBLEM WITH SUPPORTING
MENTORS AND INDIVIDUAL AWARDS IS
THAT THE NIH PEER REVIEWERRERS
LIKE TO SEE THE PRIMARY MENTOR
BEING SOMEBODY NOT JUST THAT HAS
THE CONTENT EXPERTISE BUT IS
ALSO A PLAYER, SOMEBODY THAT HAS
RESEARCH GRANTS.
AND THAT STARTS TO SELECT
AGAINST PEOPLE THAT ARE, YOU
KNOW, NOT AT THE MOST ELITE
INSTITUTIONS SO SOMETIMES
THERE'S A VERY SUPPORTIVE MENTOR
OR MENTORING ENVIRONMENT, BUT
THE PERSON JUST DOESN'T HAPPEN
TO HAVE A GRANT AT THAT TIME.
AND THEY JUST DON'T SCORE AS
WELL.
AND WE HAVE TO FIGHT THAT SORT
OF ATTITUDE IN ORDER TO HAVE
BROADER WAYS OF SUPPORTING
PEOPLE AND AS MICHELLE MENTIONED
IN THE INTRODUCTION SOME PEOPLE
WE'RE SUPPORTING ARE NOT GOING
INTO PURELY ACADEMIC, YOU KNOW,
R01 CAREER.
>> WE SPENT, I DON'T KNOW, 8
HOURS TALKING ABOUT THIS AT THE
WORKING GROUP.
WE COULD SPEND ANOTHER 20 HOURS
TALKING ABOUT THIS.
I DO RECOGNIZE WE'RE A LITTLE
BIT OVER TIME.
SO, WHAT WE HAD WANTED FROM THIS
GROUP IS A VOTE OF WHETHER YOU
ENDORSE THOSE RECOMMENDATIONS OR
WHETHER YOU HAD MAJOR CONCERNS
WITH THOSE RECOMMENDATIONS.
AND THIS IS BE CAREFUL WHAT YOU
WISH FOR, ASKED FOR
RECOMMENDATIONS SO I GET THEM.
SO IF WE COULD MAYBE MOVE TO --
YEAH.
>> CAN WE ENDORSE MINOR
REVISIONS?
WHAT'S SAID IS REALLY IMPORTANT
TO CONSIDER, RIGHT?
BUT ALSO I THINK GOING BACK TO
WHY PEOPLE ARE NOT APPLYING
BECAUSE THERE'S NO SUPPORT, I
THINK THAT'S ALSO IMPORTANT.
I WAS GOING TO MENTION THAT WHEN
I HAD MY FIRST K99 I HAD TO
LEARN AND GET EVERYTHING.
WE DID IT, TWICE, IT TOOK A LOT
OF TIME FOR ME.
AND I DIDN'T HAVE MENTORING SO I
HAD TO LEARN MYSELF.
YOU CAN IMAGINE I THINK YOU NEED
TO DO SOMETHING ON THAT.
IT'S NOT ONLY THE STUDENTS, THE
MENTORS, AND THE ENVIRONMENT,
RIGHT?
SO MAYBE WITH THE NEW CRITERIA,
MAYBE THAT WOULD BE LESS, YOU
KNOW, OF AN IMPACT.
SO BUT I THINK THESE ARE VERY
GLOBAL CHANGES, SO --
>> SO IS THERE A MOTION TO
ACCEPT THE RECOMMENDATIONS?
>> SOUNDS LIKE A MOTION TO
ACCEPT WITH SOME CHANGES.
>>
[CROSSTALK]
>> WE SHOULD ARTICULATE.
THE PART YOU WANT TO REVISIT THE
RECOMMENDATION IS THE
RECOMMENDATION IN TERMS ABOUT
THE NO GREATER THAN 10%?
>> YEAH.
>> IN TERMS OF -- AND THEN THE
SECOND RECOMMENDATION THAT YOU
WANT TO REVISIT NOT JUST SAY WE
WOULD INCREASE THE AMOUNT OF
PEOPLE THAT WE WANT TO GET THE
WORD OUT TO BUT MAYBE BEING MORE
SPECIFIC ABOUT LIKE WHAT LEWIS
AND ROBERT SAID IN TERMS OF HOW
DO WE DIVERSIFY WHO IS GETTING
Ks AND HOW DO WE SUPPORT A
DIVERSE TYPE OF UNIVERSITY, YOU
KNOW, FOLKS, BEING ABLE TO GET
THE Ks AND DIVERSE TYPE OF
MENTORS BEING ABLE TO GET THE
Ks.
SO, THAT THEN SAYS I THINK THAT
WOULD BE RECOMMENDATION -- THE
LAST RECOMMENDATION WE WANT TO
EDIT THAT ONE, RECOMMENDATION
NUMBER 6.
>> JUST A QUICK RESPONSE TO MY
COMMENT.
RICK SEGAL WROTE ME.
WE KNOW THIS IS TRUE, THE
CENTERS FUND A LOT OF PEOPLE WHO
AREN'T IN THE CENTERS AROUND THE
COUNTRY SO, YOU KNOW, I DIDN'T
MEAN TO SOUND AS EXTREME AS IT
SOUNDED.
AND I THINK THAT, YOU KNOW,
SOMETHING AS SIMPLE AS JUST
CONTINUING TO ENCOURAGE THAT
DIVERSIFICATION THROUGH THAT
MECHANISM IS GREAT.
>> I THINK WE'RE ALSO LOOKING AT
NOT JUST THE RECOMMENDATIONS BUT
FOLLOWING ON THAT THE
IMPLEMENTATION OF --
>> YEAH, THINK SO.
SO WE AGREE WITH NUMBER 6 BUT WE
WANT TO CLARIFY HOW MAYBE SOME
OF THE IMPLEMENTATION AND WE'RE
AGREEING THAT WE STILL WANT TO
FUND BUT I THINK I'M HEARING
THAT PEOPLE DON'T WANT TO
NECESSARILY PUT THE 10% CEILING
ON IT.
>> (INAUDIBLE).
>> I DON'T THINK WE NEED TO SET
SPECIFIC NUMBERS.
I THINK THIS IS A
RECOMMENDATION, SO A
RECOMMENDATION COMES WITHOUT ANY
HARD BOUNDARIES SO MAYBE JUST
LEAVING IT AT THIS COULD BE GOOD
ENOUGH.
>> SO IT'S VERY HARD TO BE BOTH
INVESTIGATOR INITIATED AND TO
SET GOALS FOR CERTAIN FUNDING.
SO, WE HAD PUT A RANGE TO
REFLECT THAT IN SOME YEARS I'M
GOING TO GET MORE APPLICATIONS,
IN SOME YEARS FEWER
APPLICATIONS, BUT THE EMPHASIS
FROM YOU ALL WE CAN'T JUST LET
THIS GO TO THE AVERAGE, THAT WE
STILL NEED TO BE OUT IN FRONT
AND PUSHING IT.
AND THAT'S GOING TO TAKE A
LITTLE BIT OF PRO-ACTIVE WORK ON
OUR PARTS.
SO WE HAVE NOT TALKED ABOUT
IMPLEMENTATION SO THAT'S KIND OF
GOING TO BE OUR HARD WORK TO
FIGURE OUT HOW TO DO THIS BUT
JUST THE RECOMMENDATION WE
SHOULDN'T LET IT GO AVERAGE, ONE
YEAR 9%, ONE YEAR 11%, YOU'RE
NOT GOING TO BE MAD AT ME,
RIGHT?
BUT WE'RE -- KNOWING WE CAN'T
JUST SIT BY AND LET IT GO --
PROCEED TO THE MEAN.
AND THEN, YOU KNOW, WE HAVE THIS
WONDERFUL NEW DIRECTOR OF THE
OFFICE OF HEALTH EQUITY, SO IT'S
IN THE RECOMMENDATIONS BUT WE
DIDN'T TALK ABOUT WHO SHE IS AND
WHAT HER GROUP IS DOING AND HOW
THEY ARE INTERACTING WITH US,
THAT COULD BE SOMETHING WE DO AT
THE NEXT MEETING TO SHOW HOW I'M
ENVISIONING TO IMPLEMENT AND
WHO I'LL NEED HELP FROM
BASICALLY.
DOES THAT SOUND GOOD?
>> YEAH, THEN YOU'RE SAYING
WE'LL LOOSEN THE NUMBERS ON
NUMBER 1 BUT THAT THE REST OF IT
CAN KIND OF BE AS IS, THAT WE
COULD VOTE ON AS IS, SO BARBARA?
>> CALL THE QUESTION.
ALL IN FAVOR?
OPPOSED?
THANK YOU.
THANK YOU ALL.
>> OKAY.
>> THANK YOU TO ALL THE
COMMITTEE.
A GREAT DISCUSSION OVER THE LAST
FEW MONTHS.
WE REALLY APPRECIATED YOUR
INPUT.
WE'VE REACHED THE LUNCH BREAK.
THE BREAK FOR LUNCH.
WE'LL RECONVENE AT 1:30, SO YOU
FOLKS AT HOME, GO AHEAD AND RAID
YOUR REFRIGERATORS.
WE'LL SEE YOU AGAIN IN A LITTLE
MORE THAN AN HOUR. THANK YOU.
WE'LL START THE AFTERNOON WITH A
PRESENTATION BY DR. SALZER,
ASSOCIATE PROFESSOR, DEPARTMENT
OF PHYSICAL MEDICINE AND
REHABILITATION, CASE WESTERN.
HE GOT HIS Ph.D. IN MECHANICAL
ENGINEERING AT NORTHWESTERN, AND
REHABILITATION INSTITUTE OF
CHICAGO.
IN 2009, INVESTIGATING
EXOSKELETAL ASSISTANCE FOR
PEOPLE FOLLOWING STROKE.
THE RESEARCH IN HIS LAB IS
MOTIVATED BY LARGE GAPS IN
KNOWLEDGE PREVENTING FULL
RECOVERY OF PATIENTS FOLLOWING
STROKE.
TODAY, HE'S GOING TO BE SPEAKING
ABOUT A MORE PERSONAL ROLE, THAT
IS AS A FATHER TO A DAUGHTER
WITH TBI.
THANK YOU SO MUCH, DR. SULZER.
>> THANK YOU VERY MUCH.
THANKS FOR THE INTRODUCTION.
AND THANKS TO ALFRED FOR
INVITING ME TO THIS.
I'LL SHARE MY SCREEN.
ARE WE OKAY?
OKAY.
>> YES.
>> GOOD, THANK YOU.
I'M GOING TO BE TALKING ABOUT
INCORPORATING THE EXPERTISE OF
LIVED EXPERIENCE IN REHAB
RESEARCH, THE MAIN THESIS OF THE
TALK AND I HOPE I GET THAT POINT
ACROSS TODAY.
THE MAIN POINTS I WANT TO GO
OVER WHAT MAKES COMPLEX CARE SO
OVERWHELMING FROM THE PERSONAL
EXPERIENCE.
I WANT TO DRIVE HOME THE POINT
THAT LIVED EXPERIENCE SHOULD BE
CONSIDERED A CREDENTIAL OR
QUALIFICATION OR EXPERTISE,
WHATEVER YOU WANT TO CALL IT,
BUT I THINK THE TALK WOULD BE
SUCCESSFUL IF WE COME AWAY WITH
THAT ONE POINT.
AND THEN FINALLY FINISHING UP
WITH POTENTIAL ACTION ITEMS I
SEE FOR NIH AND NCMRR.
RALPH ASKED ME TO BE
PROVOCATIVE.
I HOPE I ACHIEVE THAT TODAY.
SOME BACKGROUND AS WAS
MENTIONED, Ph.D. AT RIC AND
NORTHWESTERN, DEVELOPING
EXOSKELETON TO HELP PEOPLE AFTER
STROKE WITH STIFF KNEE GAIT,
HELP THEM WALK BETTER.
I THEN DID A BIT OF A 180 FROM
MY POSTDOC DOCK IN SWITZERLAND,
fMRI BASED NEURONEEDBACK,
DOPAMINERGIC MID-BRAIN, AS MY
FACULTY POSITION WHEN I MOVED TO
UNIVERSITY OF TEXAS AS AT AUSTIN
IN MECHANICAL ENGINEERING, WHERE
I CONTINUE DOING THIS.
I SHOULD HAVE MENTIONED I MET MY
WIFE AT NORTHWESTERN, A Ph.D.
IN CHEMICAL AND BIOLOGICAL
ENGINEERING, LINDSAY, AND SHE --
WHEN WE MOVED TO AUSTIN SHE
STARTED HER JOB AT A BIOTECH
START-UP IN TISSUE ENGINEERING.
WE HAD A BROAD BASE OF KNOWLEDGE
BETWEEN BOTH OF US.
WE HAD THREE CHILDREN IN AUSTIN.
THIS IS THE BEST PICTURE WE EVER
TOOK OF THEM, EARLY IN THE
PANDEMIC.
THIS IS N IN OUR BACK YARD.
IN MAY OF 2020 LINDSAY WAS ON
HER WAY TO WORK FOR THE FIRST
TIME SINCE THE PANDEMIC STARTED,
SHE WAS ON THE ROAD.
I WAS IN THE OFFICE GRADING
FINAL EXAMS.
AND WE JUST HIRED A NANNY THE
WEEK BEFORE.
AND I -- THE KIDS WERE OUTSIDE.
I HEARD SCREAMING FROM THE
NANNY, I KNEW RIGHT AWAY IT WAS
LIBBY BECAUSE SHE CAUSES BY FAR
THE MOST TROUBLE.
FOR EXAMPLE THREE IN THE MORNING
WHEN SHE CLIMBS A COUNTER TO GET
THE SUGARY STUFF, FIVE A.M. I
RATHER RUSTLING, FIND HER WITH
YOGURT AND SUGAR EVERYWHERE OR
PUTS HER HAND IN FRONT OF HER
EYES AND THINKS SHE IS INVISIBLE
AND WALKS DOWN THE STREET.
BUT THE SCREAMING CONTINUED, I
WENT TO THE BATHROOM TO LOOK
OUTSIDE AND LIBBY WAS SPLAYED ON
THE GROUND WITH THE NANNY OVER
HER.
SO, MY STOMACH DROPPED, I RAN
OUTSIDE TO SEE WHAT WAS WRONG,
AND A TREE BRANCH FELL ON HER
HEAD FROM ABOUT 30 FEET UP.
I CALLED 911, THE AMBULANCE CAME
PRETTY QUICKLY.
I FOUND WHEN I WAS ON THE RIDE
TO THE HOSPITAL SHE HAD A BLOWN
RIGHT PUPIL.
APPARENTLY MEANT THERE WAS
PRESSURE ON THE BRAINSTEM, IF
SHE DIDN'T HAVE SURGE TROY
RELEASE THE SWELLING SHE
WOULDN'T MAKE IT.
SHE HAD A CRANIOCTOMY, A VENT
INSTALLED, A G-TUBE, A JP DRAIN
TO DRAIN CEREBROSPINAL FLUID, A
LOT OF EQUIPMENT ON THIS TINY
PERSON, THE CRISIS -- SORRY, WAS
THERE A QUESTION?
NO, I THOUGHT I HEARD SOMETHING.
THAT CRISIS, EVERYTHING SEEMED
TO BE IN AN ALTERNATE REALITY AT
THIS POINT.
SHE WAS IN A COMA FOR TWO WEEKS.
AFTER THE FIRST WEEK WE WERE
DESPERATE FOR A PROGNOSIS, AFTER
THE FIRST WEEK GO GOT THAT.
THE NEUROLOGIST DID A PERFUSION
MRI, 1.5 T-MAGNET, YOU KNOW
THAT'S STANDARD FOR CLINICAL
ENVIRONMENT BUT ALSO PROBABLY
THE LOWEST RESOLUTION IMAGE
WE'RE GOING TO GET AND BASED ON
THAT WITH HER STILL IN A COMA
THE PROGNOSIS WAS SHE WOULD HAVE
DIFFICULTY CONCENTRATING ON MATH
PROBLEMS AND WALK WITH A LIMP.
WHEN I HEARD THAT, I WAS
DEVASTATED, BOTH OF US, THAT
THERE WOULD BE ANY PERMANENT
INJURY TO THIS, OUR PERFECT
LITTLE GIRL.
BUT I ALSO THOUGHT IT WAS ODDLY
SPECIFIC.
IT WASN'T UNTIL LATER EVENTUALLY
THAT I REALIZED THAT PREDICTION
WAS WILDLY OFF, LIKE THROWING A
DART AT A DART BOARD.
THAT COLORED OUR IMPRESSION
GOING FORWARD.
IN THE END IT WOULD HAVE BEEN
BETTER IF THEY JUST SAID WE
DON'T KNOW, EVEN THOUGH WE WERE
DESPERATE, IT WOULD HAVE BEEN
BETTER JUST TO SAY THAT.
AFTER THOSE TWO WEEKS, IN A
COMA, SHE STARTED BREATHING ON
HER OWN AND WE MOVED HER UP TO
PHYSIATRY.
WE TOOK HER OFF THE MOST -- THE
COMA-INDUCING DRUGS.
SHE WOKE UP, OPENED HER EYES.
I WAS HOPING TO COMMUNICATE BUT
INSTEAD SHE WAS IN AN
UNRESPONSIVE WAKEFULNESS STATE
THAT LASTED FOR WEEKS, SO MUCH
SO THAT WE REALIZED THAT SHE
NEEDED TO GO TO A PLACE THAT HAS
EXPERIENCE WITH KIDS LIKE HER.
I TALKED TO COLLEAGUES AND THEY
SUGGESTED KENNEDY KRIEGER IN
BALTIMORE.
WE HAD TO FIGHT, ANOTHER STORY,
TO GET HER THERE.
I TOOK THE AIR AMBULANCE WITH
HER TO KENNEDY KRIEGER, MY WIFE
AND BOYS WENT TO CLEVELAND TO BE
WITH EXTENDED FAMILY.
WE SWITCHED OFF EVERY TWO WEEKS.
AT KENNEDY KRIEGER SHE BECAME
CONSCIOUS, STARTED SMILING, AND
AFTER ABOUT FIVE MONTHS SINCE
THE ACCIDENT THEY SENT HER HOME
TO AUSTIN, WE TOOK THE PLANE
BACK WITH HER.
THIS WAS I THINK A REALLY -- SHE
WAS EXCITED TO BE REUNITED WITH
HER BROTHERS, AFTER FIVE MONTHS,
BUT THIS IS ALSO A POINT WHERE
OUR LIVES WERE COMPLETELY
DIFFERENT AND THERE WAS NO ONE
TO TRAIN US HOW TO ADAPT TO
HAVING A KID LIKE THIS.
IT'S A BIG HOLE IN THE MEDICAL
SYSTEM.
WE DID FIND OUT, FINAGLE WAYS OF
GETTING A LOT OF THERAPY.
WE GOT INPATIENT -- SORRY,
OUTPATIENT THERAPY, HOME THERAPY
SIMULTANEOUSLY, SO ABOUT 20
HOURS OF THERAPY PER WEEK, WHICH
WAS REALLY ADVANTAGEOUS, A LOT
OF PEOPLE WOULDN'T KNOW ABOUT
THAT POSSIBILITY, WHICH IS
ANOTHER MAJOR ISSUE I WANTED TO
MENTION THAT THE AMOUNT OF
KNOWLEDGE WE HAVE IS DIFFERENT
THAN THE AMOUNT OF KNOWLEDGE
ANOTHER FAMILY IN SIMILAR
SITUATION HAS.
IN SOME WAYS BETTER, SOME WAYS
NOT AS GOOD.
AND THE LACK OF FEELING THAT WE
KNOW WHAT OTHER PEOPLE KNOW, I
THINK MAKES THIS PROCESS FEEL
SO MUCH MORE NEBULOUS.
I GET AN IDEA OF HER FUNCTION.
I COULD SHOW MORE BUT I NEED TO
MOVE THE PRESENTATION ON.
I WANT TO TALK ABOUT SOME
CAREGIVER ISSUES.
THE FIRST THING AND MOST
STRIKING ARE EMOTIONAL ISSUES
THAT COME WITH THIS.
THE MAJOR ONE, THIS IS BEFORE
THE ACCIDENT OF COURSE, THIS IS
WHO WE SEE WHEN WE LOOK AT
LIBBY.
THIS MAJOR EMOTIONAL ISSUE IS A
SENSE OF AMBIGUOUS LOSS.
AFTER THE INJURY SHE MAY LOOK
SOMEWHAT SIMILAR BUT SHE IS FOR
ALL INTENTS AND PURPOSES A
COMPLETELY DIFFERENT PERSON,
COGNITIVELY IMPAIRED, MOVEMENT
IMPAIRED, SHE OBVIOUSLY DOESN'T
REALLY KNOW WHAT HAPPENED.
THERE'S FEELINGS OF EXCLUSION
FROM NEUROTYPICAL SOCIETY.
THERE'S A WHOLE LIST OF THINGS.
THERE'S ALSO LOGISTICAL ISSUES.
I DON'T EXPECT YOU TO READ
THROUGH ALL BUT THESE ISSUES
WHICH NOW THAT I'M WORKING FULL
TIME MY WIFE IS THE PRIMARY
PERSON DOING THIS, ALL OF THESE
ARE SUBSTANTIAL.
AND TIME IS A ZERO SUM GAME.
THE MORE TIME WE SPEND ON THESE,
THE LEST TIME WE SPEND
PERSONALLY WITH LIBBY, LEST TIME
WE SPEND WITH REID AND NOAH, THE
LEST TIME WE SPEND ON OURSELVES.
THAT'S NOT SIT ON THE COUCH AND
ENJOY YOURSELF WHICH IS STILL
VALUABLE, THAT'S STUFF LIKE GO
TO THE DOCTOR FOR OURSELVES,
RIGHT?
WHICH BRINGS UP THE OTHER TOPIC,
THE PHYSICAL ISSUES.
LIBBY HAS DIFFICULTY DOING ALL
ACTIVITIES OF DAILY LIVING, AND
SHE NEEDS TO BE ASSISTED WITH
THESE.
AFTER A WEEKEND OF SUPPORTING
HER WHILE WALKING, SHE CAN
SUPPORT HER OWN WEIGHT BUT NOT
BALANCE, DOING OTHER ACTIVITIES,
SITTING WITH HER, YOU FEEL
EXHAUSTED.
AND THAT DOES CAUSE EVENTUALLY
SOME MUSCULOSKELETAL ISSUES.
I HAVE A BAD BACK, A ROTATOR
CUFF ISSUE, A HIP ISSUE, I'M
ONLY GETTING OLDER AND SHE'S
ONLY GETTING BIGGER.
I TALK ABOUT THESE NEGATIVE
THINGS BUT THE POSITIVES, YOU
SEE THIS GIRL, SHE'S ONE OF THE
MOST ADORABLE PEOPLE IN THE
WORLD.
SHE'S A VERY HAPPY GIRL.
SHE ALSO HAS NO SENSE OF HER OWN
SAFETY.
YOU CAN SEE RIGHT THERE, SO
EVERYONE WHEN THEY ARE HAVING A
BAD DAY, FIRST GRADE NOW, THE
TEACHERS AND STUDENTS GO TO HER
TO CHEER HER UP.
EVERYONE THAT KNOWS HER LOVES
HER BUT IT'S DIFFICULT, IT'S A
LOT OF WORK.
SO I WANT TO GO INTO ONE OF THE
BULLET POINTS DOWN HERE,
COORDINATING COMMUNICATION, TO
ILLUSTRATE WHAT MAKES SOME OF
THESE LOGISTICAL ISSUES SO
DIFFICULT.
BEFORE LIBBY'S INJURY WE WOULD
TALK TO THE PEDIATRICIAN, TO
INSURANCE, AND THEY WOULD TALK
TO EACH OTHER.
AFTER THE INJURY, THERE'S A LOT
MORE LINES OF COMMUNICATION, A
LOT MORE COMPLEX.
EACH ONE OF THESE LINES HAS ITS
OWN CHANCE OF FAILURE.
AND THAT MEANS THAT THINGS ARE
FAILING ALL THE TIME.
WE'RE THE ONES WHO LOSE OUT.
SO, ESPECIALLY THIS THIRD PARTY
COMMUNICATION, A HUGE SOURCE OF
STRESS AND TIME TO JUST MAKE
SURE THAT THINGS ARE
COMMUNICATED PROPERLY.
THAT'S JUST, AGAIN, ILLUSTRATING
ONE OF THE CHALLENGES THAT GO
ALONG WITH LOGISTICS.
TO MOVE TO ANOTHER TOPIC, MAKING
MEDICAL DECISIONS, WHAT MAKES
THIS SO DIFFICULT.
WHEN WE LOOK AT EVIDENCE AS
SCIENTISTS, I'M OVERGENERALIZING
BUT WE LOOK AT THE BOX, THE
RESPONSE, SIGNIFICANCE BETWEEN
THE TWO, PRETTY SATISFYING IN
MORE RECENT YEARS WE LOOK AT
CLINICALLY MINIMALLY SIGNIFICANT
DIFFERENCES AS WELL.
BUT THAT'S SATISFIED WITH
DIFFERENCE IN AVERAGES.
WITH PHYSICIANS, WITH THERAPISTS
MY EXPERIENCE AND FROM MY
CONVERSATIONS, I DON'T HAVE A
CLINICAL DEGREE, THEY LOOK AT
THEIR EXPERIENCE, HAVE PATIENTS
BENEFITED, ANECDOTAL EVIDENCE
AND HOPEFULLY BEING INFLUENCED
BY SCIENCE BUT THAT'S NOT ALWAYS
THE CASE.
IT'S WHY WE HAVE THE FIELD OF
IMPLEMENTATION RESEARCH.
PARENTS ON THE OTHER HAND LOOK
AT POSSIBILITY.
AND YOU'RE AWARE BUT TO
ILLUSTRATE, WE DON'T REALLY CARE
IF DIFFERENCE BETWEEN AVERAGES,
WE DON'T SEE OUR CHILD AS A DOT
ON A PLOT.
WE WANT TO KNOW IS THERE A
POSSIBILITY OUR CHILD COULD
BENEFIT, EVEN IF 90% OF KIDS
DON'T, 10% DO, MAYBE IT'S WORTH
DOING.
THAT'S NOT WHAT WE'RE SEEING
WHEN WE LOOK AT SCIENCE, TWO
EXAMPLES HERE.
ONE OF THEM IS HYPERBARIC OXYGEN
THERAPY.
YOU MAY BE AWARE, HIGH PRESSURE
CONTAINER WITH CONCENTRATED
OXYGEN TO BREATHE IN, SO THAT
MEANS ONE OF US, LINDSEY OR I
AND LIBBY GO IN THE TUBE FOR A
WHILE AND FOR 40 SESSIONS, IN
OUR HALF A SESSION,ICS -- IT
TAKES A FEW MONTHS, HOPEFULLY TO
INDUCE NEUROGENESIS, WE DON'T
KNOW IF IT WILL OR NOT.
PARENTS LOVE THIS, IT'S
EXTREMELY POPULAR IN THE TBI
COMMUNITY.
SCIENTISTS HATE IT.
AFTER LIBBY GOT INJURED I
REACHED OUT AND WAS SENT A
REVIEW PAPER, SUPER HELPFUL, I
ASSUME YOU KNOW WHO DYAN SO I'M
NAME-DROPPING.
THIS IS A FIELD GUIDE TO WHAT WE
SHOULD DO.
AND I LOOKED AT THE GREEN STUFF,
OKAY, AS SOON AS SHE'S OUT OF
THIS COMA, WE'RE GOING TO GET
STARTED, EVIDENCE-BASED
MEDICINE.
I REMEMBER THE FIRST MEETING
WITH CLINICIANS, ONLY
EVIDENCE-BASED STUFF WE'LL DO.
THEN THE REALITY, SHE ISN'T FIT
FOR A LOT OF THESE, NOT REALLY A
CANDIDATE, AND IF YOU ONLY STICK
TO EVIDENCE-BASED MEDICINE YOU
WON'T DO A WHOLE LOT.
ONE BIG CAVEAT, THIS IS ALSO
CEREBRAL PALSY, NOT TRAUMATIC
BRAIN INJURY.
YOU CAN SEE HYPERBARIC OXYGEN IS
ONE OF THE FOUR THINGS YOU
SHOULD NOT DO BUT THE REASON I
TELL THE STORY WE
EVIDENCE-LOVING SCIENTISTS STILL
DID THIS FOR OUR CHILD.
SO WHY WOULD WE DO THIS,
SOMETHING SO COUNTERINTUITIVE?
IT STARTS WITH SUPPORT GROUPS.
I DON'T WANT TO TO TO BLAME
SUPPORT GROUPS.
YOU NEED TO TALK TO PEOPLE WHO
KNOW WHAT IT'S LIKE WHEN YOU'RE
GOING THROUGH THIS.
THERE'S VERY FEW PEOPLE WHO
COULD UNDERSTAND THIS KIND OF
STRAIN.
LIBBY OR LINDSEY FOUND THIS
POST, MANY OTHERS LIKE IT, WITH
VERY STRONG OPINIONS ABOUT HBOT.
YOU'RE SEEING WHAT YOU WANT TO
SEE, HEY, THERE'S A POSSIBILITY,
MY CHILD WHO HAS A SIMILAR
DIAGNOSIS AS THIS COULD BENEFIT
FROM THIS.
EVERYTHING ELSE WE'RE DOING
WE'RE SEEING A GLACIAL PACE OF
RECOVERY SO WHAT DO WE HAVE TO
LOSE, RIGHT?
THIS IS WHAT WE'RE FACING,
PARENTS POSTING THIS.
WE KNOW SOME OF THESE PARENTS.
THEY ARE REASONABLE PEOPLE,
SMART PEOPLE.
THEY ARE NOT -- THEY DON'T HAVE
ULTERIOR MOTIVES.
I'M TRYING TO BE OBJECTIVE
SCIENTIST, IT'S NOT WORTH OUR
TIME, SO LINDSAY HAD ME GO BACK
AND LOOK AGAIN AND SAID WHY
DON'T YOU LOOK AT WHAT WAS
BEHIND THIS DECISION.
AND ONE OF THE MOST POPULAR
THERAPIES FOR PARENTS THIS IS
ONLY TWO RCTs, WHAT THE CIRCLE
REPRESENTS, WHICH THERE'S A LOT
OF WAYS OF DOING THE RCT.
IT'S ONLY FOR CP.
ONE OF THE RCTs, BOTH GROUPS
ACTUALLY IMPROVED, THE AUTHOR
WROTE THAT, NOVACK, SAYING I
DISAGREE, AND WRITES BACK, THE
NUMBERS ARE THE NUMBERS.
A DISAGREEMENT.
I DIDN'T FEEL THERE WAS ENOUGH
REASON NOT TO DO IT.
HOW COULD WE DENY THE
POSSIBILITY OF OUR DAUGHTER
PERHAPS MAKING A STEP CHANGE IN
HER RECOVERY WHEN WHAT WE'RE
SEEING IS A GLACIAL PACE AND NOT
DO THIS.
THAT WENT INTO THE DECISION.
ONE OF THE HARDEST PARTS WHEN I
TALK ABOUT THIS PEOPLE ASK DID
IT HELP?
I DON'T KNOW.
FOR MOST OF OUR DECISIONS, WE
DON'T KNOW IF IT HELPS, BECAUSE
THE CHANGES AREN'T DRAMATIC.
THE ONLY TIME YOU SEE -- VERY
FEW THINGS CAUSE DRAMATIC
CHANGE.
IT COULD HAVE HURT, COULD HAVE
HELPED, WE DON'T KNOW.
WE MAKE THE BEST DECISION WITH
THE INFORMATION WE HAVE.
AND THAT'S WHAT WE GO WITH.
ULTIMATELY IT'S A REALLY
AGONIZING PROCESS BECAUSE YOU
FEEL EVERY DECISION YOU MAKE
COULD BE REALLY CRITICAL FOR THE
FUTURE OF MY DAUGHTER, AND IT
COULD BE THE WRONG WRONG.
NOT DOING IT OR DOING IT MAY BE
THE WRONG DECISION, AND WE DON'T
EVEN KNOW.
SO, GETTING THAT OBJECTIVE
INFORMATION IS REALLY IMPORTANT.
THE PROBLEM IS IT'S HARD TO GET
GOOD OBJECTIVE INFORMATION
BECAUSE OF VOICES YOU'RE
HEARING, NOT FROM ACADEMIA.
THE VOICES YOU'RE HEARING ARE
FROM PLACES TRYING TO HELP YOU
BUT ARE OFTEN SPONSORED BY
PEOPLE WHO DO HAVE A HUGE
FINANCIAL CONFLICT OF INTEREST
SO THIS WAS A REALLY, REALLY
HELPFUL RESOURCE.
THE SOLUTION THEY PROVIDE IS NOW
EVERYONE KNOWS SOME OF THE SAME
INFORMATION RATHER THAN ONE
FAMILY KNOWING ONE THING AND
ANOTHER KNOWING A DIFFERENT
THING.
THE KEYNOTE SPEAKERS ARE OFTEN
FUNDING THE CONFERENCE THOUGH,
I'M GOING TO GET TO THIS LATER,
I WOULD LOVE IF NIH COULD FUND A
RESOURCE FAIR SO WE DON'T HAVE
TO RELY ON PEOPLE WITH CONFLICTS
INTEREST.
PUTTING A STATEMENT AT THE
BEGINNING OF THE TALK DOESN'T DO
THAT MUCH.
SO ANOTHER EXAMPLE OF MEDICAL
DECISIONS, THIS DEVICE WHICH IN
YOU'RE UNFAMILIAR IS A TREXO, A
PEDIATRIC EXOSKELETON, MOVES THE
LEGS ON THE SAGITTAL PLANE LIKE
THE LOCAMAT, BUT IT'S AN
OVERGROUND VERSION.
WHAT I LIKE IS THEY TAKE AN
ALREADY EXISTING WALKER, THE
GREEN THING, AND PUT THEIR
DEVICE ON TOP OF IT.
SO, I HAVE AN EXO BACKGROUND.
I ALSO KNOW FROM MY EXPERIENCE
AT THE REHAB INSTITUTE THAT
THERE'S A LITTLE BIT OF
SKEPTICISM ON WHETHER THESE ARE
ACTUALLY VERY HELPFUL OR NOT.
FOR WHAT PEOPLE THEY ARE
HELPFUL.
FOR LIBBY SHE CAN ALREADY MOVE
HER LEGS, SHE JUST CAN'T
BALANCE.
I DON'T KNOW IF SHE'D NEED IT
BUT REGARDLESS I WAS HOOKED UP
WITH THE PERSON WHO IS A CEO OF
THE COMPANY, HE SHOWED ME THREE
INCREDIBLE ANECDOTES OF CHILDREN
WHO LOOK LIKE LIBBY AND THEN
MADE DRAMATIC RECOVERIES AFTER
TAKING 10,000 STEPS IN THIS
THING.
AND THAT IS EXACTLY SPEAKING
PARENT LANGUAGE.
IT DOESN'T MATTER IF A THOUSAND
DIDN'T DO IT.
IF YOU SEE THREE MAKING THOSE
IMPROVEMENTS, THAT IS REALLY
CONVINCING.
AND THEN I THOUGHT TO MYSELF,
TEN THOUSAND STEPS IN THIS
THING?
THERE'S NO RCTs ON THIS, GOOD
CLINICAL PRACTICE GUIDELINES SAY
JUST MOVING PEOPLE IN A
KINEMATIC TRAJECTORY DOESN'T
TEACH THE KINEMATIC TRAJECTORY,
MAYBE THIS GUY KNOWS SOMETHING
WE DON'T KNOW.
BUT IT'S A THOUSAND DOLLARS A
MONTH TO RENT, 10,000 STEPS
MEANS DROPPING ALL OTHER
THERAPIES TO DO THIS AND ON TOP
OF THAT WHERE WAS SHE WALKING
TO?
WHY IS SHE WALKING?
SHE'S NOT GOING TO WALK JUST TO
WALK.
I PASSED.
BUT I DON'T KNOW IF THAT WAS THE
RIGHT DECISION OR NOTE.
MAYBE THERE IS SOMETHING TO
THIS.
BUT WE'LL NEVER KNOW.
THAT'S THE TYPE OF DECISION WE
HAVE TO MAKE.
FOR A PARENT WHO DON'T HAVE MY
BACKGROUND AND KNOW GOOD
CLINICAL PRACTICE GUIDELINES AND
HISTORY OF EXOS, IT'S A HARD
DECISION, PROBABLY TRYING TO
SELL THE FAMILY FARM TO PAY FOR
THIS AND IT'S TOUGH.
I'M GOING TO MOVE ON, TALK ABOUT
HOW MY LIVED EXPERIENCE HAS
MAYBE CONTRIBUTED TO LIBBY'S
RECOVERY AND WHAT I'VE TRIED.
AFTER I GOT BACK FROM THE
HOSPITAL, I RECRUITED STUDENTS
TO WORK ON PROJECTS FOR HER.
WE DID A NUMBER OF THINGS.
THIS IS AN EARLY VERSION, SO WE
WOULD KNOW FORCE DISTRIBUTION
AND STANDARD.
WE DID A BALANCE AND BODY WEIGHT
SUPPORT DEVICE THAT WAS MOBILE.
WE TRACKED HER VISION BECAUSE
IT'S REALLY FRUSTRATING TRYING
TO GET QUANTITATIVE INFORMATION
IN OUR OPHTHALMOLOGIST, ACTIVITY
BOARD, SWALLOWING SENSORS, VIDEO
GAMES, INTERACTIVE BOARDS.
LIBBY'S PERSONAL FAVORITE, A
RIDE-ON CAR.
THREE SWITCHES TO CHALLENGE HER
GRASPING AND USE THE CAR AS A
MOTIVATING PLATFORM.
I WOULD SAY IN GENERAL MOST OF
THE STUFF WAS PROBABLY A FAILURE
OR DIDN'T WORK QUITE AS WELL TO
BE IMPLEMENTED.
REALLY THE MAIN BENEFIT WAS NOT
SO MUCH LIKE A LITTLE BIT
BENEFIT, MY EXPERIENCE, BUT MORE
HER EXPERIENCES BENEFITED MY
RESEARCH.
THIS IS AN EXCERPT TAKEN FROM
THE JOURNAL PAPER LINDSAY AND I
WROTE, MAYBE SOME OF YOU ARE
FAMILIAR, A COUPLE YEARS AGO.
WE WROTE IT NINE MONTHS AFTER
LIBBY GOT INJURED.
IT STILL HOLDS.
AND THIS MAIN QUESTION RIGHT
HERE, CAN WE USE SIMPLER
TECHNOLOGY?
THIS WAS SOMETHING THAT --
YOU'VE HEARD A MILLION TIMES TO
KEEP THINGS SIMPLE BUT WE STILL
HAVE A BIAS JUST BECAUSE WE HAVE
THIS ADVANCED TECHNOLOGY IT'S
AUTOMATICALLY GOING TO MAKE
PEOPLE BETTER.
AND NOT TO SAY IT COULDN'T.
BUT TO ASSUME TO HAVE THAT BIAS
ADVANCED TECHNOLOGY IS BETTER
WITHOUT BEING APPRECIATIVE OF
THE BAGGAGE IT CARRIES, THE
EXPENSE, COMPLEXITY, DIFFICULTY
TO IMPLEMENT, DIFFICULTY TO FIX.
THESE ARE ALL GOING TO HAPPEN.
SO IF WE HAVE THE SIMPLEST
TECHNOLOGY POSSIBLE THAT GETS
THE JOB DONE, THAT SHOULD BE,
YOU KNOW, APPRECIATED RATHER
THAN THIS BIAS WE HAVE OF MORE
TECHNOLOGY IS BETTER.
ANOTHER MAJOR POINT THAT I
DIDN'T REALLY CONSIDER BEFORE
HER INJURY WAS WHETHER IT CAN
ADDRESS MULTIPLE IMPAIRMENTS.
LIBBY HAS A VERY BUSY SCHEDULE.
IT IS DIFFICULT TO DO.
WE DID SPRINT FOR THE FIRST
COUPLE YEARS, BEFORE SHE STARTED
SCHOOL, AND IT WAS VERY
DIFFICULT TO FIND TIME IN DAY TO
WORK ON IMPAIRMENTS.
IF THERE'S SOMETHING THAT CAN
KILL TWO OR THREE BIRDS WITH ONE
STONE THAT'S HELPFUL.
THE MOST MORE THAN POINT ISN'T
ON THE LIST, CAN YOU ACTUALLY
INTEGRATE INTO SOMEONE'S DAILY
LIFE?
IF SHE'S ALREADY HAPPY GOING TO
THE GROCERY STORE AND ALREADY
LIKES PLAYING WITH THINGS MAYBE
WE CAN PUT HER IN HER DAY
TRAINER AND HAVE HER INTERACT
WITH PEOPLE, PULL STUFF OFF THE
SHELVES, SHE'S TRAINING ALL
SORTS OF THINGS BY DOING THAT
SIMPLE WEEKLY ACTIVITY.
I HOPE I'M MAKING A POINT I FEEL
I'VE DEVELOPED AN EXPERTISE IN
UNDERSTANDING HOW THINGS FIT
TOGETHER.
THAT GOES TO THE MAIN THESIS OF
THE TALK, LIVED EXPERIENCE IS A
QUALIFICATION.
BEFORE THE INJURY, I WOULD GO TO
A CLINICIAN AND GET A FULL
IMPRESSION OF SOMEONE.
IT'S A VERY IMPORTANT
PERSPECTIVE FROM A CLINICIAN BUT
WHAT THEY ARE GOING TO KNOW IS A
BROAD PERSPECTIVE OF A NARROW
PART OF A PATIENT.
AS SCIENTISTS YOU CAN SAY THE
SAME THING.
ONLY SOMEONE WITH THAT LIVED
EXPERIENCE WHEN YOU'RE WITH
SOMEONE ALL DAY ARE YOU GOING
SEE THE DIFFERENT VERTICAL
PERSPECTIVE.
THE POINT HERE IS WE SHOULD
CENTRAL PERSPECTIVE AS MUCH AS A
CLINICIAN OR SCIENTIST, IT
SHOULD BE INCLUDED ALTOGETHER.
WHEN I BRING UP THE QUESTION, DO
YOU VALUE -- DO YOU AGREE LIVED
EXPERIENCE IS A QUALIFICATION, A
LOT OF PEOPLE, JUST ABOUT
EVERYONE IS GOING TO SAY YES.
BUT I DON'T THINK WE DO.
I DON'T THINK WE FULLY VALUE
THAT POINT.
A FEW EXAMPLES.
THE FIRST, MANY OF YOU HAVE SEEN
MAD MEN, THOSE WHO HAVEN'T IT
TAKES PLACE IN MANHATTAN, NEW
YORK ADVERTISING FIRM.
VERY MALE DOMINATED.
LET'S, FOR EXAMPLE, BELIEVE
YOU'RE IN THIS MADISON AVENUE
ADVERTISING FIRM SELLING WOMEN'S
LIPSTICK, HOW WOULD YOU INCLUDE
THE FEMALE PERSPECTIVE?
THIS IS A PLOT LINE FROM THE
SHOW.
FIRST YOU SAY YOU'RE JUST GOING
TO TELL THEM WHAT THEY WANT
BECAUSE YOU'RE A MAN, THEY LIKE
MEN SO YOU KNOW WHAT THEY WANT.
AT RIDICULOUS AS THIS SOUNDS,
EARLY 1960s, NEW YORK, THIS
ISN'T FAR AWAY FROM WHAT WE DO
IN SCIENCE NOW.
IT'S SIMILAR.
IN FACT I DID THIS FOR MY
Ph.D.
SO WHAT I DID WAS I GOT
BIOMECHANIC NIST, THERAPISTS,
PHYSICAL PHYSIATRISTS IN A
ROOM, WHAT DO THEY NEED AFTER
STROKE, I THOUGHT IT WAS STATE
OF THE ART AT THE TIME.
I NEVER ONCE CONSIDERED ASKING
SOMEONE WHO HAS HAD A STROKE AND
HAS STIFF KNEE GAIT WHAT THEY
NEED.
SO I'M RIGHT THERE ASSUMING I
KNOW BETTER FOR THE PEOPLE WITH
STROKE THAN FOR THEM.
SECOND, I COULD ASK WOMEN WHAT
THEY THOUGHT AFTER THEY BUY IT.
A LOT OF RESEARCHERS FEEL
COMFORTABLE IN HAVING THAT AS
THE ONLY FEEDBACK.
IT'S STILL VALUABLE, YOU'RE
ASKING PEOPLE WHAT THEY THOUGHT
ABOUT THE EXPERIMENT AFTER THEY
PARTICIPATE.
YOU'RE NOT REALLY USING THEM FOR
EVERYTHING THEY CAN PROVIDE.
THERE'S A LOT MORE THEY CAN
BRING TO THE TABLE RATHER THAN A
THUMBS UP OR DOWN.
THE SECOND PROBLEM WITH THIS IS
THAT THE RESEARCHER HAS FULL
POWER TO ACCEPT OR REJECT ANY
OPINION THAT THEY WISH.
WHAT ABOUT A FOCUS GROUP?
YOU COULD CONVENE A FOCUS GROUP
AND HE THAT DID THIS IN THE SHOW
AS WELL TO UNDERSTAND WHAT WOMEN
WANT.
FOCUS GROUPS ARE A NICE TOOL.
BUT IT STILL HAS THE SAME ISSUE
OF VALIDATING OR INVALIDATING
THE IDEA, NOT USING PEOPLE TO
THE BEST EFFECT, AND THE
RESEARCHER STILL HAS ALL THE
POWER TO ACCEPT OR DENY ANYTHING
THEY WOULD LIKE.
AND THEN IN THE SHOW THEY HIRE
ELIZABETH MOSS, THE ACCOUNT GOES
VERY WELL, ET CETERA.
AGAIN, THIS IS EARLY 1960s NEW
YORK.
HOW MANY STUDIES HIRE SOMEONE
WITH LIVED EXPERIENCE RIGHT NOW?
IT ISN'T SURPRISING, IT ISN'T
COMMON, IT DOES HAPPEN, AS WE
ALL KNOW WE'RE NOT SELLING TO
PEOPLE WITH LIVED EXPERIENCE OR
PEOPLE WITH DISABILITIES.
WE'RE SELLING TO OTHER
SCIENTISTS.
SO WE'RE NOT IN THE FREE MARKET
SYSTEM.
AND A LOT OF PEOPLE BROUGHT UP
IF I'M GOING TO GO THROUGH ALL
THIS TROUBLE WITH THE EVIDENCE
THAT INCLUSION OF LIVED
EXPERIENCE IS HELPFUL, WHY WOULD
WE DO THAT?
MY COLLEAGUE KIM ANDERSON HAS
DONE A LOT TO SHOW THAT,
ACTUALLY BENEFITING SPINAL CORD
INJURY RESEARCH, OTHER FIELDS AS
WELL.
I'VE LISTED A BUNCH OF WAYS IT
CAN HELP.
RECRUITMENT, OUTCOME MEASURES,
COMMUNITY OUTREACH,
DISSEMINATION, ALL OF THESE
ASPECTS, INCLUSION, LIVED
EXPERIENCE, CAN HELP IMPROVE THE
RESEARCH PROCESS. .
ANOTHER EXAMPLE, LET'S SAY
YOU'RE A HISTORY STUDENT, YOU'RE
AN INDIAN STUDENT LOOKING AT
PROGRAMS IN INDIAN HITS, WOULD
YOU TAKE ONE TAUGHT BY ENGLISH,
WITH RECOMMENDATIONS FROM A
PLACE NOT REPRESENTED FROM
INDIA, EXAMPLE OF TOKENISM, OR
TAKE ONE TAUGHT BY VARIOUS
INDIVIDUALS FROM DIFFERENT
INDIAN IDENTITIES AND OUTSIDE
THE COMMUNITY WHICH IS OF COURSE
PROBABLY MAKES THE MOST SENSE.
IF YOU'RE AN END USER WOULD YOU
THERE'S THE SYSTEM THAT DOESN'T
INCLUDE PEOPLE WHO UNDERSTAND
YOU?
WHEN DOES THAT HAPPEN?
I HAD A TALENTED UNDERGRADUATE
WHO DID AN EVALUATION OF PARENTS
AND WHAT INFLUENCED MEDICAL
DECISIONS REQUIRING DEVICES.
SHE FOUND CLINICIAN
RECOMMENDATIONS AND SCIENTIFIC
EVIDENCE WERE THE LOWEST RATED
FACTORS MAKING A MEDICAL
DECISION.
SO MAYBE THIS IS A BIAS.
JESS LONDON, A MOM OF TWO
CHILDREN WITH CP, STARTED THIS
WEBSITE, IT'S NOW AN APP, A
SUCCESSFUL APP, AND WHAT WE'RE
SEEING RIGHT HERE IS SOCIAL
MEDIA AND PERSONAL
RECOMMENDATIONS ARE BY FAR WHAT
IS MOST HIGHLY INFLUENCING
PEOPLE MAKING DECISIONS.
ACADEMIC ARTICLES, THE FAMILIES
I KNOW DON'T CITE ACADEMIC
ARTICLES AS INFLUENCING THEIR
DECISIONS.
IT'S PERSONAL RECOMMENDATIONS
AND SOCIAL MEDIA.
I THINK THIS DIVIDE BETWEEN WHAT
SCIENCE IS SHOWING AND WHAT
PEOPLE ARE DOING IS
REPRESENTATIVE OF LACK OF TRUST.
LET'S GO TO THE THIRD EXAMPLE,
PLANET OF THE APES, LET'S
PRETEND YOU'RE AN APE.
AND THE HUMANS WANT TO HAVE A
VOICE IN PARLIAMENT.
SO WHAT DO YOU DO?
DO YOU REQUIRE YEARS OF RESEARCH
TO DETERMINE THE VALUE OF
PUTTING THEM IN PARLIAMENT?
WHICH IS WHAT SOME PEOPLE WOULD
LIKE, WHERE IS THE EVIDENCE.
WOULD YOU RESIST CHANGE BECAUSE
OF PRACTICE ISSUES SUCH AS
DETERMINING WHO IS HUMAN OR IF
THEY WOULD ADVOCATE FOR
THEMSELVES WHY WOULD WE INCLUDE
THEM?
SIMILAR TO SAYING, WELL, HOW DO
WE KNOW WHO HAS LIVED
EXPERIENCE?
THAT'S A STICKY QUESTION.
HOW CLOSE DO YOU HAVE TO BE?
I DON'T HAVE A NEUROLOGICAL
INJURY, BUT I STILL CONSIDER
MYSELF HAVING LIVED EXPERIENCE.
AND AS FAR AS PEOPLE ONLY
ADVOCATING FOR THEMSELVES I'LL
GET INTO THAT IN A LITTLE BUT I
DON'T THINK THAT'S A PROBLEM.
I THINK THEY ARE SUPPOSED TO
ADVOCATE FOR THEMSELVES AND
SHOULD BE THERE.
WHAT IF WE REQUIRE CURRENT
PARLIAMENTARIANS, APES, TO WRITE
A SUMMARY?
I'M AFRAID THIS IS WHERE THIS
GREAT IDEA OF THE PLAN TO
INCLUDE LIVED EXPERIENCE, I'M
AFRAID WE'RE JUST SCIENTISTS
TRYING TO CONVINCE OTHER
SCIENTISTS WE'RE REPRESENTING
PEOPLE WITH LIVED EXPERIENCE.
OF COURSE, YOU CAN PROVIDE
REPRESENTATION.
ARE PEOPLE WITH LIVED EXPERIENCE
BEING PROVIDED A PLACE WITHIN
THE POWER STRUCTURE?
AND I DON'T KNOW WHAT NIH IS
MADE OF OR WHAT THE POWER
STRUCTURE IS EXACTLY BUT I THINK
THAT'S FOR YOU TO ASK THIS
QUESTION.
IT DOES HAVE AN EFFECT.
THOSE OF YOU FAMILIAR WITH THE
AUTISM COMMUNITY KNOW THERE'S A
DUST-UP I RECENTLY WITH "THE
LANCET" PAPER, WHICH WAY SHOULD
IT GO AND THE AUTISM COMMUNITY
DIDN'T AGREE AND WEREN'T HAPPY
THEY GOT LEFT OUT.
THEY ARE LOOKING FOR A VOICE,
FOR A WAY OF HELPING INFLUENCE
THE RESEARCH AGENDA, NOT THE
ONLY VOICE, THEY JUST WANT THEIR
VOICE HEARD.
THOSE OF YOU FAMILIAR WITH
ANTHONY FAUCI, THIS CAME OUT
RECENTLY, HE STARTED OUT ONLY
RESPECTING RCTs DEALING WITH
THE AIDS EPIDEMIC AND STARTED
INTERACTING WITH THE ADVOCACY
GROUPS, AIDS ADVOCACY GROUPS,
THINGS STARTED CHANGING FOR THE
BETTER.
SO WE KNOW THESE EXAMPLES EXIST.
AS FAR AS BIAS IS CONCERNED THIS
IS AN EXAMPLE I THINK
REPRESENTATIVES BIAS.
YOU'RE SEEING HERE AN ESTIMATION
OF THE ANNUAL INCIDENCE OF
SPINAL CORD INJURY, CEREBRAL
PALSY, PEDIATRIC SEVERE TBI.
YOU'RE LOOKING AT 18,000 AND
20,000 GIVE OR TAKE BASED ON
ESTIMATES.
THAT'S ANNUAL INCIDENCE.
AND NOW WE'LL LOOK AT NICHD
FUNDING IN GREEN.
FOR SPINAL CORD INJURY, THE
NICHD FUNDING FROM NIH REPORTER
OVER ALL FISCAL YEARS, THAT WAS
$350 MILLION.
FOR CEREBRAL PALSY, A LITTLE BIT
OVER $450 MILLION.
PEDIATRIC SEVERE TBI IS ABOUT
$32 MILLION.
SO IT COSTS ABOUT $2 MILLION TO
TAKE CARE OF A KID WITH A SEVERE
TBI, WE'RE INVESTING $32 MILLION
FROM NICHD OVER ALL FISCAL
YEARS.
SO TO ME WHAT THIS REPRESENTS IS
A BIAS.
BUT WELL MAYBE IT'S BEYOND
NICHD.
MAYBE ALL NIH.
IF YOU LOOK ACROSS ALL OF NIH
IT'S MORE STARK, SPINAL CORD
INJURY $4 BILLION, THAT'S NOT
INCLUDING DoD AND V.A.
FUNDING.
CP $1.5 BILLION, PEDIATRIC
SEVERE TBI $68 MILLION.
TO ME THE REASON THIS REPRESENTS
BIAS IS BECAUSE IF YOU ARE A
STROKE RESEARCHER LIKE I WAS
THERE'S A GOOD CHANCE YOU'LL BE
A STROKE RESEARCHER THE REST OF
YOUR CAREER BECAUSE IT'S HARD TO
GET FUNDING.
ONCE YOU GET RAILROADED, THERE'S
GOING TO BE NO ATTENTION PAID TO
CERTAIN MALADIES.
I THINK THAT'S PROBLEMATIC.
MAYBE IT'S OUTSIDE NIH.
MAYBE IT'S FUNDED SOMEWHERE
ELSE.
IF IT WAS, THEN YOU WOULD SEE
THAT IN THE PUBLICATIONS.
SO, GOING OFF PubMed LOOKING
FOR CLINICAL TRIALS, TYPING IN
SEARCH TERMS, THE NUMBER OF
RCTs ON PEDIATRIC SEVERE TBI
IS NEGLIGIBLE.
WE HAD TO DEPEND ON THE REVIEW
FOR CP WHICH CLEARLY SHE DOES
NOT HAVE CP, SIMILAR BUT NOT CP.
IT'S PROBLEMATIC.
DEGREES OF TOKENISM ACCORDING TO
CITIZEN PARTICIPATION LADDER,
NOTHING TO DO WITH DISABILITIES
IN GENERAL, INFORM PEOPLE, THIS
IS LAY SUMMARIES, CONSULT WITH
PEOPLE, EXIT INTERVIEWS,
TOKENISM, PLACATE USING
HAND-PICKED WORDESE, NOTABLE
STRATEGIES.
WHAT I'M AFRAID OF IS THESE ARE
ALL GOOD THINGS TO DO, ALL
LEVELS OF INCLUSION, BUT WHAT
I'M AFRAID OF IS PEOPLE DON'T
SEE THIS HIGHER LEVEL, THE IDEA
OF POWER SHARING.
THESE PARTNERSHIPS.
THE IDEA EXISTS OUT THERE BUT I
DON'T KNOW IF THAT'S WHERE IT'S
HEADED.
I HOPE IT'S NOT JUST STOP HERE
AND PAT OURSELVES ON THE BACK.
IT BRINGS US TO THE PLAN TO
INCLUDE LIVED EXPERIENCE.
I TOOK THIS STRAIGHT OFF THE
WEBSITE.
THIS IS GREAT.
I'M REALLY HAPPY YOU GUYS ARE
DOING THIS.
I THINK INCLUDING FOCUS GROUPS
IS GOOD, IT'S NOT ENOUGH BUT
IT'S REALLY GOOD TO HAVE FOCUS
GROUPS TO HAVE WAYS TO FORM
SCIENTIFIC AIMS.
THE THIRD POINT, I DON'T KNOW.
MY OPINION BASIC SCIENCE COULD
BENEFIT FROM INCLUSION OF LIVED
EXPERIENCE FROM ACTUAL PEOPLE.
IF YOU'RE GOING TO SACRIFICE A
LOT OF ANIMALS DON'T YOU WANT
THE ETHICAL COVER OF KNOWING
THIS PROBLEM IS IMPORTANT ENOUGH
AND WORTH SACRIFICING A LOT OF
ANIMALS?
I WOULD THINK SO.
AND I REALLY LOVE IN THE BOTTOM
HOW THERE'S A MEMBER OF THE
RESEARCH TEAM THAT'S BEING
SUGGESTED, SO I THINK THIS IS
ALL GREAT STUFF.
MY CONCERN IS MORE ON THE META.
IT'S NOT CLEAR IF THIS IS
REQUIRED.
IT WASN'T CLEAR TO ME, EVEN IF
IT IS, HOW IT'S REVIEWED,
WHETHER LIKE PLANET OF THE APES
WE'RE JUST GOING TO CONVINCE
OTHER APES WE'RE REPRESENTING
HUMANS.
WHO IS ACTUALLY READING THIS,
WHO IS EVALUATING IF THIS IS
ACTUALLY A GOOD PLAN AND DO THEY
HAVE EXPERTISE, BACK TO THE
POINT OF THE TALK, EXPERTISE TO
EVALUATE THIS.
WHAT'S REALLY IMPORTANT, GETTING
ON TO THE SUGGESTIONS HERE IS
THAT THERE'S SOME FUNDAMENTAL
INCLUSION PRINCIPLES ADOPTED.
AND THE TOP ONE IS THE TITLE OF
THE TALK, LIVED EXPERIENCE AS
EXPERTISE.
I DIDN'T MAKE THIS UP.
NONE OF THIS STUFF I'M MAKING
UP.
THERE'S AN ORGANIZATION FOUNDED
BY A FORMER O.T., INCLUSIVE
CO-DESIGN CENTER IN CANADA.
THIS IS RIGHT ON THEIR WEBSITE.
THERE'S THE IDEA OF PRIORITIZING
EDGE CASES.
IN SCIENCE, A PERFECTLY GOOD WAY
TO DO SCIENCE, YOU START AS
SIMPLE AS POSSIBLE AND GET MORE
COMPLEX.
BUT WITH DESIGN, YOU KIND OF
WANT TO START COMPLEX AND WORK
YOUR WAY IN BECAUSE THAT WAY YOU
MAKE SURE YOU HAVE GENERALIZABLE
SOLUTIONS.
BOTH STRATEGIES NEED TO BE
VALUED.
I'M NOT SURE THAT'S THE CASE.
THERE'S THE IDEA OF A
ACCOUNTABILITY AND SHARED
LEADERSHIP.
PEOPLE WITH DISABILITIES, LIVED
EXPERIENCE, MANY WANT TO SAY HOW
MONEY IS SPENT IN THEIR NAMES, A
REASONABLE THING TO ASK.
THERE'S RECIPROCAL
RELATIONSHIPS, THIS COMES FROM
PCORI, PATIENT CENTERED OUTCOMES
RESEARCH INSTITUTE.
I'VE HAD DISCUSSIONS WITH
PEOPLE, WELL, YOU SHOULD APPLY
TO PCORI OR NIDILRR OR THESE
ORGANIZATIONS THAT SEEM TO BE A
LOT MORE INVOLVED WITH PEOPLE
WITH LIVED EXPERIENCE.
I THINK THAT'S GREAT, THE BUDGET
IS ALSO .5% OF NIH.
THAT CAN'T BE HOW MUCH WE VALUE
LIVED EXPERIENCE.
THE IDEA OF RECIPROCAL
RELATIONSHIPS IS FIGURING OUT
EACH OTHER'S ROLES.
CO-LEARNING IS REALLY IMPORTANT.
I THINK THERE NEEDS TO BE SOME
SORT OF STRUCTURE FOR
CO-LEARNING.
I MENTIONED KIM ANDERSON, MY
COLLEAGUE, BEFORE, WHO HAS HER
ORGANIZATION, NORTH AMERICAN
SPINAL CORD INSTITUTE.
THEY HAVE WORKSHOPS SET UP TO
TEACH PEOPLE WITH LIVED
EXPERIENCE WITH SCIENCES AND HOW
TO TEACH SCIENTISTS WITH LIVED
EXPERIENCES, I THINK THAT'S
GREAT.
BUT THE MOST IMPORTANT THING
CO-LEARNING IS NOT SO MUCH
TAKING A CLASS, IT'S SPENDING
TIME WITH THE PEOPLE AND
LEARNING TO RESPECT THEM AS A
PEER.
NOT TALKING DOWN TO THEM, BOTH
WITH MUTUAL RESPECT.
I THINK YOU'RE IN GOOD SHAPE FOR
PARTNERSHIPS, THE LAST PART,
ACTUALLY ACTIVELY PARTNERING
WITH PEOPLE AND PAYING THEM FOR
WHAT THEY DO.
I THINK THERE NEEDS TO BE A
FORMALIZED WAY OF DOING THIS.
MY FEAR IS THIS BECOMES
PERFORMATIVE.
WHAT CAN NIH DO?
I WOULD LOVE TO HAVE TRAINEES
COME TO MY HOUSE AND TAKE CARE
OF MY DAUGHTER.
A LOT OF PEOPLE WITH
DISABILITIES WOULD LOVE TO HAVE
PEOPLE HELP OUT A LITTLE SO THEY
CAN LEARN WHAT THEIR PROBLEMS
ARE FROM A FIRST PERSON
PERSPECTIVE.
DO THINK IT'S IMPORTANT IF WE'RE
GOING TO INCLUDE PEOPLE IN
PARTNERSHIPS THEY NEED SOME
TRAINING IN SCIENCE.
YOU CAN'T JUST PICK ANYONE OFF
THE STREET AND HAVE THEM MAKE
MEANINGFUL CONTRIBUTIONS.
THEY DO NEED TO BE -- HAVE SOME
ABILITIES.
A LOT HAVE INCREDIBLE ABILITIES
AND ARE SMART PEOPLE, IN SOME
CASES SMARTER THAN ME.
I KNOW THERE'S THE TALENT THERE.
WE'RE JUST NOT REALLY
CULTIVATING IT, NOT FARMING IT
PROPERLY.
I WOULD LOVE TO SEE THAT.
AS FAR AS INCLUSION I KNOW THAT
PEOPLE WITH LIVED EXPERIENCE,
THEY ARE INVITED TO CONFERENCES,
PUT UP THERE ON A PANEL, I DON'T
KNOW IF THEY ARE INVOLVED IN
PLANNING OUT THE CONFERENCE OR
HOW MUCH THEY ARE INVOLVED IN
MAKING SURE THE CONFERENCE IS
RELEVANT TO THEM.
WE TALKED ABOUT INCLUSION,
SCIENTIST REVIEW, YOU'RE
FAMILIAR WITH THAT CONCEPT.
FUNDING AGENCIES, SENIOR
POSITIONS, I DON'T KNOW HOW MANY
PEOPLE IN FUNDING AGENCIES, I
DON'T KNOW WHAT THEY ARE MADE OF
BUT MY IMPRESSION IS THERE'S
REALLY NOT A SUFFICIENT GROUP.
EMBRACING COMPLEXITY, THE IDEA
THAT WE DESIGN FOR THE CENTER
CIRCLE.
WE SHOULD DESIGN FOR THE EDGE
CASES AND CAN WORK OUR WAY IN.
THAT'S A VALID APPROACH TO TAKE
WITH COMPLEX CASES WHERE IF WE
START SIMPLE AND TRY TO GET MORE
COMPLEX WE'RE NEVER GOING TO GET
THERE.
FINALLY OBJECTIVE INFORMATION, I
TALKED ABOUT THE PROBLEMS OF
MEDICAL DECISION MAKING.
I GOT TO TELL YOU, IT FEELS LIKE
THE WILD WEST.
IT'S HARD TO SORT OUT EVEN WITH
SCIENTIFIC EXPERTISE, IT'S HARD
TO SORT OUT WHAT WE SHOULD DO
AND SHOULDN'T DO BECAUSE THERE'S
JUST A LACK OF EVIDENCE.
EVEN BEYOND EVIDENCE YOU'RE
LOOKING FOR MECHANISMS, SHOULD
THIS HELP, NOT HELP, APPROACH
CLINICIANS, THEY ARE LAX TO GIVE
YOU THEIR OPINION.
IT'S HARD TO TAKE THE TIME TO
LOOK IT UP THEMSELVES SO IT'S
REALLY HARD TO EMPOWER US TO
MAKE DECISIONS WITHOUT ALL THE
KNOWING THE SAME INFORMATION.
FEELS LIKE EVERY PARENT KNOWS
SOMETHING DIFFERENT AND THAT'S
PROBLEMATIC.
I HOPE NIH CAN HELP REMOVE THE
DEPENDENCE ON SPONSORSHIPS LIKE
I SHOWED AT THE RESOURCE FAIR SO
WE CAN GET REAL OBJECTIVE
INFORMATION THAT'S UNBIASED AS
POSSIBLE.
JUST TO RECAP, COMPLEX MEDICAL
NEEDS ARE CHALLENGING.
I HOPE I ILLUSTRATED THAT.
I FLEW THROUGH THAT.
MEDICAL DECISION MAKING IS
REALLY AGONIZING FOR THE REASONS
I MENTIONED.
WE DON'T FEEL WE HAVE ENOUGH
INFORMATION TO MAKE GOOD
DECISIONS.
FEELS LIKE THE WILD WEST WITH
EVERYONE THROWING THINGS AT US.
THERE DOESN'T SEEM TO EVEN BE A
REPOSITORY OF DEVICES OUT THERE,
A CENTRAL HUB OF DEVICES,
THERAPIES, TO MAKE
APPLES-TO-APPLES COMPARISONS.
LACK OF INCLUSION THAT'S BEEN
GOING ON FOR DECADES RESULTS IN
LACK OF TRUST IN THE SYSTEM.
YOU'LL FEEL LACK OF TRUST LIKE
THE EXAMPLES I GAVE.
PEOPLE WORRY INCLUSION WILL SLOW
SCIENCE DOWN.
I'VE HEARD THAT IN PRIVATE
CONVERSATIONS BUT IT DOESN'T
MATTER IF IT'S BEING SLOWED DOWN
FANTASTIC GOING IN THE WRONG
DIRECTION.
INCLUSION WILL RESULT IN EQUITY
LIKE THE INEQUITY WITH THE
RESEARCH GOING TOWARDS THE LACK
OF RESEARCH TOWARD PEDIATRIC
TBI.
ULTIMATELY MY OPINION, I BELIEVE
NIH NEEDS GUIDING PRINCIPLES.
IT NEEDS TO UNDERSTAND WHAT'S
INFORMING THE POLICY.
AND THEN ACTION ITEMS TO PURSUE.
I GAVE OUT SOME IDEAS BUT
CLEARLY THERE'S BETTER IDEAS OUT
THERE.
THAT'S ALL I'VE GOT.
WE'VE GOT 15 MINUTES FOR
DISCUSSION SO I'M HAPPY TO HAVE
SOME TIME TO TAKE ANY QUESTIONS.
>> JAMES, THANK YOU SO VERY
MUCH.
WADE?
>> THANKS SO MUCH.
YEAH, JAMES, I WANT TO THANK YOU
PERSONALLY FOR THIS AMAZING TALK
TODAY.
WE DIDN'T REALLY GO THROUGH THIS
IN THE DISCLOSURE THIS MORNING
BUT AS I MENTIONED I'M THE
DIVISION CLEAVE FOR CEREBRAL
PALSY, WE SEE A LOT OF PATIENTS
WITH TRAUMATIC BRAIN INJURY IN
OUR GROUP AND I'M THE DAD OF TWO
ADULTS WITH CP WHO ARE 26, SO I
JUST THINK YOU ELOQUENTLY
EXPRESSED THAT CHALLENGE AND
VAST GAP OF EVIDENCE AND
PARENTAL HOPE WHICH DRIVES
DECISION MAKING FOR SO MANY
PARENTS.
IT'S ONE OF OUR NEW RESEARCH
ARMS TO DIG INTO SOME OF THOSE
QUESTIONS ABOUT WHAT DRIVES
PARENT DECISION MAKING AND TO
HELP DEFINE THAT GAP.
THE EXAMPLES YOU GAVE, PERTINENT
IN OUR SPACE OF HYPERBARIC
OXYGEN.
AGAIN, I WANT TO THANK YOU FOR
THAT.
YOU DID IT MUCH BETTER THAN I
COULD WHEN I TRY TO TALK ABOUT
MY KIDS, I TEND TO GET EMOTIONAL
IN THESE SETTINGS SO I
CONGRATULATE YOU ON THAT.
MY QUESTION TO YOU IS HOW DO WE
GET OUR FAMILIES AND PARENTS AND
PERSONS WITH LIVED EXPERIENCE TO
THAT POWER LEVEL OF HELPING US
DESIGN THOSE RESEARCH STUDIES
AND REALLY GET TO WHERE WE GOING
TO STAKEHOLDERS, THE TYPE OF
STUDIES WE'RE PROPOSING TO NIH
AND PCORI AND THINGS LIKE THAT
BECAUSE THERE'S THAT DISCONNECT
RIGHT THERE FOR THAT AND NOT
JUST HAVING TOKEN GROUPS
PERFORMATIVE, I LIVE THAT THAT'S
AN EMPHASIS BUT HOW DO WE DO IT
FOR HYPERBARIC OXYGEN STUDY.
>> THANKS, WADE.
I APPRECIATE THE KIND WORDS.
LET ME START, YOU'RE ASKING AN
IMPLEMENTATION QUESTION HOW TO
DO THIS.
AGAIN, I WANT TO REITERATE, I'M
NEW TO THIS.
I'M NOT AN EXPERT IN THIS
ASPECT.
I CAN SAY I'M AWARE OF
RESOURCES.
FOR EXAMPLE KEN CHILD HAS A
PROGRAM, YOU'RE SHAKING YOUR
HEAD, MAYBE YOU KNOW OF KEN
CHILD'S PROGRAM.
SO THIS IS TO TRAIN THEM TO GET
READY AND THAT'S GREAT.
PAYING PEOPLE FOR TIME WOULD BE
HELPFUL.
AND I THINK IT'S TRICKY BECAUSE,
AGAIN, YOU CAN'T GET ANYONE OFF
THE STREET.
YOU HAVE TO GET THE RIGHT PEOPLE
WHO ARE MOTIVATED AND WANT TO
HELP.
BUT I THINK IT CAN START WITH
THAT AND MAYBE SELF-SELECT FROM
THERE.
IT'S ONE OF THE TRICKIEST
PROBLEMS, I AGREE.
I THINK IF WE HAVE AN
INFRASTRUCTURE AND GET PEOPLE
INVOLVED MAYBE DIP THEIR TOES IN
THE WARD AS CONSULTANTS THAT'S
ALREADY PLANNED FOR THE LIVED
EXPERIENCE INCLUSION, NCMRR HAS
ADOPTED, IT'S A GREAT START.
I WOULD LIKE TO TO SEE IT EVOLVE
INTO PARTNERSHIPS, TRUE
PARTNERSHIPS.
>> THANK YOU.
>> JAMES, I WANT TO THANK YOU
FOR BRINGING IT.
AN ONGOING MESSAGE THE ACADEMIC
COMMUNITY HAS TO HEAR, TO NOT
TAKE OURSELVES SO SERIOUSLY WE
FORGET WHY WE'RE DOING THIS AND,
YOU KNOW, IT'S A THEME THAT I
HOPE THAT OUR CENTER, PART OF
OUR EXISTENCE AT NIH TO BRING
THE MESSAGE TO THE BROADER NIH
TO NOT FORGET WHY WE DO RESEARCH
AND GET HUNG UP A ACADEMIC
EXCELLENCE OR THINGS THAT LOOKS
GOOD IN JOURNALS.
IT'S SOMETHING, EVEN FROM THE
DISCUSSION OF RECENTERING PEER
REVIEW, TO THE SESSION COMING UP
AFTERWARDS TRYING TO TALK TO THE
BROADER RESEARCH COMMUNITY.
I APPRECIATE YOUR HONESTY
BRINGING IT FORTH WITH US.
I WANTED TO LAY THAT OUT THERE.
WE APPRECIATE IT AND SUPPORT
YOU.
THANKS.
THANKS A LOT.
>> I APPRECIATE THAT, RALPH.
THANK YOU.
>> MICHELLE?
>> HI, JAMES.
GOOD TO SEE YOU.
HAVEN'T SEEN YOU IN A WHILE.
>> HI.
>> THANK YOU FOR THAT
PRESENTATION.
IT WAS ABSOLUTELY WONDERFUL.
MADE ME THINK A LITTLE BIT ABOUT
HOW DIFFICULT IT IS TO GET TWO
PERSONS WITH LIVED EXPERIENCES.
I WONDER IF YOU HAVE SUGGESTIONS
MAYBE WE START SMALL EACH, YOU
KNOW, PERSON WITHIN THIS FIELD,
AND WHAT WOULD YOU SUGGEST AS
KIND OF LIKE MAYBE SOME CONCRETE
WAYS OF DOING IT?
IN MY WORK RIGHT NOW I HAVE
STROKE SURVIVORS THAT I CALL
EVERY TIME I'M PUTTING OUT
SOMETHING.
I PAY THEM TO COME IN AND TEST
OUT SOMETHING TO TRY OUT, A
SERIOUS GAIN, TRY OUT OUR
EQUIPMENT, BUT STILL ONLY FOUR
OR FIVE PEOPLE, YOU KNOW?
I'M WONDERING IS THERE SOMETHING
TANGIBLE WE CAN DO TO MAYBE EVEN
GET AT, YOU KNOW, YOU SAID TURN
ON, TURN IT.
>> TURN TWO.
SO TO EVEN GET TO THE PEOPLE WHO
ARE DIRECTING TURN TWO, TO GIVE
THEM THE INFORMATION THAT WE
KNOW SO THAT MAYBE THEIR
KNOWLEDGE, WHATEVER IS THE
CUTTING EDGE SCIENCE MIGHT BE
CLOSER TOGETHER, ANDs IS THERE
ALREADY A WAY TO DO THAT, THAT
WHEN WE WRITE UP DISSEMINATION
AND PUT OUT DISSEMINATION WE
DON'T REALLY INCLUDE THAT AS A
WAY OF DISSEMINATING OUR
INFORMATION SO MAYBE IS THERE
SOMEPLACE WE SHOULD BE ADOPTING
AS HERE, YOU MUST DISSEMINATE IN
SUCH AND SUCH A WAY, SOME THINGS
THAT HAVE BEEN GOING IN MY HEAD
SINCE HEARING YOUR TALK.
I THINK YOU'RE ON THE RIGHT
TRACK.
I WOULD LOVE THAT.
I'VE BEEN IN TOUCH WITH JESS AT
TURN TWO FOR SOME TIME, THEY ARE
JUST STARTING OUT.
IN MY OPINION TURN TWO IS BY
PARENTS FOR PARENTS BUT THAT'S
ALWAYS WHAT IT'S SUPPOSED TO BE.
INCLUSION OF SCIENTIFIC DATA IS
FILTERED BY A.I. THAT PICKS OUT
AND SUMMARIZES PAPERS FOR
PARENTS.
I'VE EVALUATED MANY TIMES OVER,
IT'S THE LEVEL OF A BAD
UNDERGRAD.
I'VE CONVINCED JESS YOU HAVE TO
HAVE ACTUAL SCIENTISTS PICK OUT
THESE PAPERS AND DECIDE WHAT'S
IMPORTANT, IS THIS A GOOD
JOURNAL, RELIABLE, A.I. IS NOT
CAPABLE OF DOING THAT RIGHT NOW.
HOW TO DESCRIBE IT AND SHE'S
VERY OPEN, SHE'S OVERWHELMED
GETTING THE APP ON.
IF THERE'S A WAY TOKING HOO UP
SCIENTISTS AND HELP JESS MAKE
THIS, MAKE HER APP A LITTLE BIT
MORE KIND OF RESEARCH OBJECTIVE
THAT WOULD BE FANTASTIC.
SO I THINK YOU'RE RIGHT ON THE
HEAD.
I LOVE IT BECAUSE THERE'S SO FEW
AVENUES FOR SCIENTISTS TO
DIRECTLY INTERACT WITH THE
DISABILITY COMMUNITY.
FORMER PARTICIPANTS IS A GREAT
START BUT IT'S A GREAT TOOL TO
INTERACT WITH THE DISABILITY
COMMUNITY AND I WISH THERE WERE
MORE LIKE IT.
WHERE DOES THE MONEY COME FROM?
SHE HAD TO MORTGAGE A HOUSE TO
PAY FOR IT AND GOT AUSTRALIA,
GREAT REHAB ORGANIZATION, GREAT
ENVIRONMENT, SHE GOT THROUGH
POLICY ALLIANCE TO FUND IT AND
GOT MONEY FROM ELSEWHERE BUT HOW
WOULD WE IMITATE THAT HERE?
I THINK YOU'RE RIGHT ON THE HEAD
WITH ALL THAT, YEAH.
>> LAURA?
>> WONDER IF THERE'S NEEDS AND
OPPORTUNITIES FOR INCLUSION AND
LIVED EXPERIENCE AND REVIEW
PROCESS?
>> WELL --
>> I'LL TAKE THAT ONE.
>> IT'S NOT ME.
>> HI, JAMES.
LET'S GET THE CAMERA RIGHT.
>> HI, THERESA.
>> THANK YOU SO MUCH.
JAMES AND I KNOW EACH OTHER FOR
A LONG, LONG TIME.
SO GRATEFUL YOU WERE ABLE TO
SHARE YOUR STORY AND I HOPE
LIBBY IS DOING WELL, AS WELL AS
SHE'S GOING TO RIGHT NOW.
I HOPE YOU AND LINDSAY AND THE
BOYS ARE DOING OKAY.
>> THANK YOU.
>> BACK IN OHIO, REVIEW, WE GET
THIS QUESTION A LOT.
SO, REVIEW HAS LOTS OF BOXES
THAT THEY ARE TRYING TO MARK,
AND DISABILITY STATUS IS NOT ONE
OF THEM.
SO, THAT DOESN'T MEAN WE DON'T
CARE ABOUT IT, ESPECIALLY NCMRR.
SO WE'VE HAD MANY CONVERSATIONS
WITH OUR REVIEW -- THE REVIEW
OFFICERS THAT ARE GOING TO DO
OUR RFAs, AND WE HAVE
EMPHASIZED WITH THEM HOW
IMPORTANT IT IS.
EVEN THOUGH IT'S NOT SOMETHING
THAT THEY ARE ROUTINELY AT THIS
POINT, WE'RE GOING TO HEAR FROM
ALISON CERNICH LATER, MORE OF AN
NIH-WIDE STRATEGY BUT WHERE WE
CAN MAKE A DIFFERENCE IS WHERE
WE'RE EXERTING OUR NEED BECAUSE
IT REALLY IS IMPORTANT.
>> FRANCISCO AND THEN DAOFEN.
>> HI, JAMES.
WE ALSO GO WE BACK AND, LIKE THE
OTHERS, I REALLY WANTED TO
APPLAUD YOUR COURAGE AND
OPENNESS WITH THIS.
BUT ALSO YOUR ABILITY TO
CHALLENGE US WITH WHAT NEEDS TO
BE DONE, RIGHT?
BECAUSE THIS IS NOT GOING TO
CHANGE ITSELF.
I REALLY APPRECIATE THAT.
AND SO THIS IS A DIFFICULT
PROBLEM, AS YOU KNOW.
I LIKE WHAT YOU TALKED ABOUT IN
TERMS OF THE RESOURCE FAIRS THAT
ARE ACTUALLY ESSENTIALLY
INDUSTRY DRIVEN, PROMOTIONAL
EVENTS, RIGHT?
>> YEAH.
>> AND YOU AND I, YOU KNOW, HAVE
THE FORTUNE OF BEING FRIENDS
WITH ROBERT RENNER, AND THE
DECIDE-A-THON, ESSENTIALLY THE
OLYMPIADS FOR RESEARCH
TECHNOLOGY, HEAD TO HEAD
COMPETITION BETWEEN EXOSKELETONS
AND THINGS LIKE THAT.
SO THAT'S SOMETHING THAT'S VERY
SCARY TO INDUSTRY WHO IS
DEPENDING ON THE FUNDING AND
THIS AND THAT BUT I THINK NIH
DOES REALLY HAVE AN OPPORTUNITY
THERE TO CREATE LEVEL PLAYING
FIELDS, WHERE TECHNOLOGY CAN BE
SHOWCASED, AND DEMONSTRATED TO
THE PUBLIC WITHOUT THE CONFLICT
OF INTEREST THAT'S ESSENTIALLY
BUILT INTO THE CURRENT
SITUATION, AND THERE WILL BE A
LOT OF OBJECTORS WHO SAY THE
FUNDING AGENCY MAY NOT LIKE IT,
THE COMPANY MAY NOT LIKE IT, ET
CETERA.
BUT YOU BROUGHT A VERY GOOD
POINT WHICH IS THAT THOSE
INTERESTED IN THE TECHNOLOGY,
THOSE NEEDING THE TECHNOLOGY,
SEE THE OPPORTUNITIES.
IT MAY NOT WORK TREMENDOUSLY
PERFECTLY, BUT IT WORKS SOME.
AND SO THIS WOULD BE A VENUE
WHERE TECHNOLOGY WOULD GET A
HUGE BOOST, I THINK, IN SPITE OF
ITS, YOU KNOW, CURRENT DEFICITS.
SO I REALLY LIKE THE POINT YOU
MADE, I DON'T KNOW IF YOU HAVE
SOME OTHER SUGGESTIONS YOU
THOUGHT ABOUT THIS MUCH LONGER
THAN ANY OF US HAVE.
>> WELL, YEAH, THANKS FOR THE
POINT, FRANCISCO.
AN UNBIASED WAY, THE NUMBERS ARE
THE NUMBERS, RIGHT?
YOU TEST THEM OUT, HEAD TO HEAD,
A REALLY GOOD POINT.
I DON'T FEEL WE'RE EVEN AT THE
STAGE OF UNDERSTANDING BASIC
MEDICAL DECISIONS ALL IN THE
SAME LEVEL.
THERE'S A FAMILY THAT WE'RE
FRIENDS WITH THAT DOESN'T KNOW
WHAT A MEDICAID WAIVER IS,
DIDN'T KNOW THEY QUALIFIED FOR
MEDICAID WAIVER.
THAT'S JUST BLOWING MY MIND.
HOW DO WE KNOW THAT AND THEY
DON'T KNOW THAT?
I THINK JUST FROM -- WE CAN TALK
ABOUT HIGH TECH TO HIGH TECH,
BUT REALLY JUST THERE'S NO BASE
KNOWLEDGE, AND I THINK WE NEED
TO WORK AT THAT, SO I'M NOT
DRESSING YOUR POINT WHAT CAN WE
DO TO BRING TECHNOLOGY TO THE
PEOPLE AND HAVE THEM LOOK AT IT
IN THE LEVEL PLAYING FIELD.
I DON'T KNOW IF A COMPETITION IS
THE NECESSARY WAY TO DO THAT.
I THINK THERE'S OPPORTUNITIES
FOR THAT.
I HAVEN'T THOUGHT OF THAT IN
DETAIL.
MY CONCERN IS REALLY THE BASE
LEVEL OF JUST GETTING BY RIGHT
NOW.
WE'RE NOT OPERATING ON THE SAME
INFORMATION.
BUT I THINK THAT'S A GREAT IDEA
WHAT YOU HAVE, A GREAT
OPPORTUNITY.
>> THANK YOU.
DAOFEN?
>> HELLO, JAMES.
I REALLY APPRECIATE THIS
PRESENTATION THAT I THINK ALLOWS
YOUR LAST STATEMENT TO SAY
EVERYTHING I WOULD LIKE TO SAY,
JUST WANTED TO ECHO THAT.
SINCE YOU ARE AN ENGINEER, WE
HAVE SEVERAL ENGINEERS IN THE
ROOM, IT WOULD BE INTERESTING TO
HEAR WE DON'T HAVE TO SPEND TOO
MUCH TIME BUT WE DO HAVE
EMERGING TOOLS AND THE FACT
DURING YOUR PRESENTATION THESE
DAYS EVERYTHING I STARTED WITH
CHATGPT, TYPED WHAT IS JAMES
SULZER'S LIVED RECENT
EXPERIENCE, IT GOT IT 80% RIGHT.
AND JUST WONDER HOW WE CAN
LEVERAGE EMERGING TOOL TO HELP
NIH, SO WE CAN HELP YOU BETTER,
WAS THE QUESTION HE ASKED.
>> WELL, YEAH, I'M NOT FULLY
AWARE OF A.I.'S CAPABILITIES.
CHATGPT IS NOT THE MOST POWERFUL
VERSION.
MY EXPERIENCE WITH USING A.I.
FOR SCIENTIFIC RESEARCH IS IT'S
OKAY BUT IT STILL LEAVES OUT A
LOT OF INFORMATION, MAYBE 80%
OKAY, SOMETIMES THAT 20% IS
IMPORTANT INFORMATION OR IT
COULD GUIDE YOU WRONG.
I'M STILL SKEPTICAL WHETHER IT
IS.
I MENTIONED THE PROBLEM EARLIER,
NO CENTRAL DATABASE OF REHAB
TECHNOLOGY, NO CENTRAL DATABASE
OF THERAPIES OUT THERE.
IT'S HARD FOR A HUMAN TO
MAINTAIN THEM.
TWO GUYS FROM CANADA ARE TRYING
TO DO THAT.
THEY STRUGGLED.
I DON'T KNOW WHERE THEY ARE NOW.
THEY PROBLEM ABLE GAVE UP ON IT.
IT'S REALLY UNFORTUNATE.
I WONDER IF A.I. COULD HELP
DEVELOP A CENTRAL HUB OF
INFORMATION.
>> ONE LAST COMMENT OR QUESTION,
KATHLEEN.
>> THANK YOU.
IT'S REALLY GREAT TO HEAR YOUR
PERSPECTIVE AND YOUR EXPERIENCE.
THAT'S REALLY IMPORTANT.
I WANT TO SHARE THAT THE
NATIONAL M.S. SOCIETY HAS TRIED
TO EMBRACE THAT, TRYING TO
LISTEN AND SEE HOW WE CAN MAKE
IT BETTER BUT THINGS WE'VE DONE,
WE HAVE INCLUDED PEOPLE WITH
M.S. IN REVIEW OF GRANTS, THEY
COME TOGETHER AS A GROUP OF
PEOPLE LIVING WITH M.S.
INCLUDING CHILDREN AND PARENTS
AND CAREGIVERS.
IT'S HARD TO CAPTURE THE WHOLE
COMMUNITY.
THAT'S ONE BIG PROBLEM WE HAVE,
IN 14 PEOPLE.
BUT WE'RE TRYING TO HEAR FROM
PEOPLE.
WE DO HAVE TO TEACH THEM ENOUGH
SCIENCE LIKE YOU SAID TO
UNDERSTAND THE LAY SUMMARY OF
THE PROJECTS.
THAT'S BEEN EYE OPENING.
FROM MYSELF AS A SCIENTIST
PERSPECTIVE AND TRYING TO TEACH
THEM AND HEARING HOW THEY ABSORB
THAT INFORMATION, THAT'S BEEN
VERY INFORMATIVE.
AND ALSO, I THINK I NOTICED WHAT
HAPPENS IN THE GROUP OF PEOPLE
WITH M.S. IS THEY END UP
SUPPORTING EACH OTHER REALLY IN
A VERY UNIQUE WAY AS THEY SHARED
THEIR EXPERIENCES.
I THINK THEY FEEL VALUED THEIR
PER PERSPECTIVE IS TAKEN INTO
CONSIDERATION AND IS IT RELEVANT
TO THIS AREA OF M.S. BECAUSE
THEY HAVE THE UNIQUE
PERSPECTIVE.
I WANT TO SHARE THAT BECAUSE I
DON'T THINK WE HAVE IT
ABSOLUTELY RIGHT BUT AT LEAST I
THINK YOU HAVE THE RIGHT IDEA.
WE JUST HAVE TO SPREAD THE WORD.
>> WELL, THANK YOU FOR SHARING.
I DON'T WANT ACT LIKE I'M SOME
EXPERT ON HOW TO REVIEW GRANTS
THE BEST WAY POSSIBLE.
I'M ARGUING FROM A GENERAL
PERSPECTIVE OF AS LONG AS WE
INCLUDE LIVED EXPERIENCE AND
MULTITUDE OF LIVED EXPERIENCES,
WHICH AS YOU POINT OUT THAT'S A
PRACTICAL ISSUE, AGAIN LIKE ALL
OF INDIA, SO MANY TYPES OF LIVED
EXPERIENCES AND A LOT OF ISSUES.
I'M NOT GOING TO PASS JUDGMENT
ON SOMETHING I'M NOT AN EXPERT
ON.
WHAT YOU'RE DOING IS GREAT AND I
THINK MAYBE I DON'T KNOW IF
YOU'VE SPOKEN TO PEOPLE AT
NIDILRR TO FIGURE OUT HOW THEY
HANDLE THESE TO KNOW HOW THAT
COMPARES.
THANKS FOR BRINGING THAT UP.
>> WE'VE TAKEN FOLKS THAT ARE
NOT REALLY GROUNDED, THEY JUST
EXPOSE THEM TO A FAMILY, A
PERSON THAT HAS SOME NEEDS FOR
PART OF THE DAY, AND IT HELPED
THEM DESIGN LOCAL SOLUTIONS,
TAKING WHEELCHAIRS OUT IF IT'S
SNOWY OR ICY, SIMPLE LOCAL
SOLUTION, SO MUCH REORIENTS THEM
ON THEIR RESEARCH, JUST REALLY
GROUNDS IT.
ANOTHER ISSUE WHEN WE DO HAVE
SOLUTIONS HOW DO YOU SHARE LOCAL
SOLUTIONS, YOU WORKED OUT WITH
YOUR WIFE OR FAMILY, HOW DO WE
THEN PASS ON TO THE NEXT PERSON
IN THE SAME SPOT THAT NEEDS THE
SAME ISSUES?
>> YEAH, THAT'S WHAT TURN TWO
AIMS TO DO, IT'S WHAT THEY
SHARE.
I DON'T KNOW IF HOW THEIR
DATABASE OPERATES BUT THAT'S THE
POINT OF THAT ONE TOOL JUST FOR
PARENTS WITH KIDS OF C P.
I THINK THIS IS GREAT THAT NIH
COULD BE INVOLVED.
WE'RE OVER TIME.
I APPRECIATE IT.
THANK YOU FOR HAVING ME.
>> JAMES, WE APPRECIATE YOUR
TALK.
WE APPRECIATE THE WORK AND KNOW
YOU AND YOUR FAMILY, WE WANT TO
GIVE YOU OUR WISHES AND SUPPORT.
>> I APPRECIATE IT.
THANK YOU, EVERYONE.
>> YOU'RE GETTING A ROUND OF
APPLAUSE HERE.
>> WE NEED TO TALK, JAMES.
I HAVE SOME SUGGESTIONS FOR YOU.
>> OKAY.
ABSOLUTELY, RICK.
>> THE NEXT SESSION IS ZOOMING
BACK TO TALK FROM A BROADER
SENSE.
RICK SEGAL AND AMY DARRAGH WILL
TALK ABOUT SOME WORK ABOUT
RESEARCH INFRASTRUCTURE.
THE PROGRAM TO TRY TO TALK TO
RESEARCHERS AT A BROADER LEVEL
ON THESE TOPICS AND HOW TO
REALLY FROM THEIR STANDPOINT HOW
DO YOU TRY TO INCLUDE PEOPLE
WITH LIVED EXPERIENCE INTO SOME
DISCUSSIONS.
SO IT'S A SETUP AFTER HAVING YOU
BRING IT NOW WE'RE GOING TO TALK
FROM THE OTHER END, AND I WANT
TO INTRODUCE RICK AND AMY.
RICK IS PROFESSOR IN THE COLLEGE
OF HEALTH PROFESSIONALS, MEDICAL
UNIVERSITY OF SOUTH CAROLINA.
HE'S BEEN KNOWN TO SNEAK TO
NORTH CAROLINA TO THE ACADEMIC
ROOTS, YOU MIGHT FIND HIM UP
THAT WAY THESE DAYS.
THESE BEEN INVITED TO SPEAK
ABOUT HIS ROLE IN THE MEDICAL
REHABILITATION RESEARCH RESOURCE
NETWORK, REALLY GREAT IN
COORDINATING.
WE APPRECIATE HIS EFFORTS,
TALKING ABOUT AN ANNUAL
SCIENTIFIC RETREAT.
AMY IS DIRECTOR OF SCHOOL OF
HEALTH AND REHAB SCIENCES,
PROFESSOR AT OHIO STATE
UNIVERSITY, THE OHIO STATE
UNIVERSITY.
SHE'S ACTUALLY ONE OF THE
DRIVERS OF ONE OF THE OTHER
RESEARCH INFRASTRUCTURE
PROGRAMS, ONE THAT FOCUSES ON
PEDIATRIC REHAB, AND HER MAIN
RESEARCH INTERESTS ARE PEDIATRIC
REHAB, PART OF THE PROGRAM
CALLED "SEE PROGRESS," AND
RANDALL DAVIS, ANOTHER
SUPPORTER, IS LURKING IN THE
BACKGROUND.
>> HE'S NOT LURKING.
>> I TURN THIS OVER TO RICK AND
AMY TO TALK ABOUT EFFORTS TO
SPREAD THE WORD FAR AND WIDE.
WE APPRECIATE WHAT THEY HAVE
BEEN DOING FOR THE INTERSECTION
NETWORKS.
RICK, AMY?
>> THANK YOU VERY MUCH.
I'M GOING TO DO THE FIRST PART.
I'M THE LEAD FOR THE
COORDINATING CENTER.
RANDALL IS LURKING SOMEWHERE,
HE'S HERE ON THE ZOOM, IS THE
ASSOCIATE LEAD.
AND THANKS FOR THE OPPORTUNITY
TO SPEAK, IT'S GREAT TO FOLLOW
JAMES WHO I'VE KNOWN FOR A LONG
TIME ALSO.
I'VE DONE A LOT OF WORK OUTSIDE
OF THIS CENTER RELATED TO SOME
TOPICS HE WAS PRESENTING SO I
NEED TO TALK TO HIM LATER
BECAUSE I HAD SOME INFORMATION
THAT MAY BE USEFUL.
THANKS FOR THE OPPORTUNITY.
WE'RE GOING TO TALK ABOUT OUR
THIRD ANNUAL RETREAT, WHICH
IS -- WAS MOVING FROM POTENTIAL
TO REAL IMPACT, ENGAGING WITH
BROADER COMMUNITY TO IMPROVE
TRANSLATION OF REHABILITATION
RESEARCH INNOVATIONS.
THIS IS OUR THIRD RETREAT.
THE FIRST WAS ON PRECISION
REHABILITATION.
THE SECOND WAS ON CLINICAL
TRIALS.
THESE HAVE BEEN WELL ATTENDED.
I'LL TALK ABOUT THIS LATER BUT
ALL OF THE TALKS FROM ALL THREE
RETREATS ARE UP ON THE WEBSITE,
CLOSED CAPTIONED ON THE WEBSITE
FOR PEOPLE THAT ARE MEMBERS OF
OUR COMMUNITY.
CLEARLY THIS IS A HOT TOPIC THAT
CANNOT GO AWAY.
JAMES REINFORCED THAT.
THIS IS SOMETHING THAT IS
INCREDIBLY IMPORTANT.
AND FOR THOSE THAT DON'T KNOW,
THE MR 3 NETWORK IS SIX CENTERS,
ALL OF THE CENTERS PARTICIPATED
IN DEVELOPING THIS RETREAT THAT
I'M GOING TO BRIEFLY TALK ABOUT.
AND THAT INCLUDES THE PEDIATRIC
CENTER THAT AMY IS INVOLVED
WITH.
AND THE CENTERS GO ALL THE WAY
FROM PEDIATRIC TO ADULT, FROM
CELLULAR TO LEARNING HEALTH
SYSTEMS.
I DO THINK IT'S IMPORTANT TO
ACKNOWLEDGE OUR PLANNING
COMMITTEE BECAUSE THEY ARE FROM
ALL THE CENTERS, FROM C-STAR,
LEARNING HEALTH SYSTEM REHAB
NETWORK, CHRISTINE AND MAGGIE
FROM THE ALLIANCE FOR
REHABILITATION RESEARCH AND
TRAINING, RITA AND CAITLIN, AND
FROM C-PROGRESS AMY DARRAGH.
FROM RESTORE OUT WEST, STANFORD,
MATT PETRUCCI AND FROM OUR
CENTER HERE AT MEDICAL
UNIVERSITY OF SOUTH CAROLINA,
THE NATIONAL CENTER OF
NEUROMODULATION FOR
REHABILITATION AND COORDINATING
CENTER FOR MR 3 NETWORK.
SO A LITTLE BACKGROUND, JAMES
HIT ON SOME OF THIS EARLIER,
THAT THE BACKGROUND FOR WHY
WE'RE DOING THIS, WE DID THIS
RETREAT, WAS FIRST OF ALL WE ALL
GOT TOGETHER AND WE WERE
PLANNING THIS, REALIZED THERE
ARE ISSUES WITH HAVING EFFECTIVE
AND EFFICIENT IMPACT ON PEOPLE
WHO NEED REHABILITATION AND
THEIR FAMILIES.
IT'S CLEAR THAT ENGAGING BROAD
COMMUNITY NEEDS TO HAPPEN EARLY
IN THE DEVELOPMENT OF RESEARCH
AND HELP WITH IMPLEMENTATION OF
RESEARCH, AND THIS IS HOW WE'LL
HAVE THE MOST IMPACT.
A FEW OF US HAVE A MEMORY FROM
2020, WHEN NIH HOSTED SCI 2020
IN BETHESDA, WHERE IT WAS VERY
CLEAR THAT BROADER ENGAGEMENT
WAS NECESSARY BECAUSE ONE OF THE
STATEMENTS THAT CAME FROM ONE OF
THE SPEAKERS AT THAT MEETING WAS
THERE'S BEEN NOTHING DONE IN
REHABILITATION FOR SPINAL CORD
INJURY THAT'S HAD ANY IMPACT ON
HIM, SOMEBODY WITH A SPINAL CORD
INJURY.
I THINK ABOUT THIS ALMOST EVERY
WEEK.
WE'VE JUST NOT HAD THE IMPACT
BECAUSE WE'VE NOT INCLUDED
EVERYBODY THAT NEEDS TO BE
INCLUDED IN THE PROCESS TO GET
US TO A POINT OF TRANSLATING.
SO WE NEEDED TO DO SOMETHING.
AND WE MIGHT BE JUST HEIGHTENING
THE CONVERSATION, CLEARLY JAMES
STARTED THAT PROCESS IN THIS
MEETING.
BUT HOPEFULLY OVER TIME WE'LL
MAKE A REAL DIFFERENCE.
FOR THIS RETREAT WE WANTED TO
GET INPUT FROM THE COMMUNITY AND
HAD A CALL FOR ABSTRACTS, IT
WASN'T OUT TO THE COMMUNITIES
BUT RESEARCHERS THAT WERE GOING
TO WORK WITH BROADER ENGAGEMENT.
WE HAD 40 SUBMITTED THAT
DICTATED THE TYPES OF SESSIONS
AND WE ENDED UP GETTING SPEAKERS
FROM ACROSS THE COUNTRY AND
CANADA, 21 INSTITUTIONS,
PARTICIPATED.
WE HAD PEOPLE FROM SIX FUNDING
AGENCIES FROM FOUNDATION TO
FEDERAL FUNDING, AND WE HAD NINE
SEPARATE SESSIONS ALONG WITH TWO
KEYNOTE LECTURES.
THE SCHEDULE GIVES AN IDEA OF
BREADTH OF THINGS WE TALKED
ABOUT.
WE STARTED WITH KEYNOTE FROM THE
DIRECTOR OF THE LEARNING CENTER,
HER TALK WAG INTEGRATING
KNOWLEDGE TRANSLATION FOR
GREATER IMPACT.
AND IT SETS UP BEAUTIFULLY.
HOW DO WE USE THE INFORMATION
WE'RE GATHERING, HOW DO WE GET
IT DONE WELL SO AWAY CAN HAVE
IMPACT.
WE HAD A VARIETY OF SESSIONS
FROM SESSIONS ON CLINICAL
RESEARCH PARTNERSHIPS, HOW DO WE
HAVE CLINICIANS AND RESEARCHERS
WORK TOGETHER IN IDENTIFYING
SOME PROSECUTES AND RESOLVING
THEM, HERE ARE SOME OF THE TALKS
FROM THE FIRST SESSION.
EACH SPEAKER HAD 20 MINUTES AND
PLENTY OF TIME FOR DISCUSSION.
RALPH AND THERESA WHO WERE
PRESENT KNOW THE DISCUSSION WAS
LIVELY, BOTH VERBALLY AND
THROUGH THE CHAT.
WE HAD SESSIONS OF COMMUNITY
ENGAGEMENT GETTING STAKEHOLDER
FEEDBACK RELATED TO PROBLEMS
WE'RE TRYING TO ADDRESS, WE HAD
EXCELLENT TALKS IN THAT AREA.
AMY WILL TALK ABOUT SOME OF
THESE RELATED ISSUES IN A
MOMENT, IN HER PRESENTATION.
WE NEED TO TALK WITH PEOPLE,
RELATED TO INDUSTRY AND
TECHNOLOGY DEVELOPMENT, THREE
SPEAKERS FINISHED WITH RICK
GREENWALD, PAST CO OF SIMBEX,
USED TO RUN ONE OF THE
INFRASTRUCTURE CENTERS THAT WAS
OUT OF THE NORTHEAST.
IT WAS GOOD TO TALK WITH
SOMEBODY ON BOTH SIDES, WHO HAS
BEEN INVOLVED IN RESEARCH BUT
ALSO IS VERY IMPORTANT TRYING TO
COMMERCIALIZE MEDICAL DEVICES
AND SO FORTH THAT WOULD BE
USABLE TO CLINICIANS, PATIENTS,
CARETAKERS.
WE TALKED ABOUT ADVISORY BOARDS,
WHAT AMY IS GOING TO FOCUS ON.
WE HAD SPEAKERS TALKING ABOUT
HOW THEY WERE USING PARENT
ADVISORY COUNCILS, AND SO FORTH.
WE WENT FROM PEOPLE DEALING WITH
MUSCULOSKELETAL ISSUES, TO
PEOPLE DEALING WITH PEDIATRIC
ISSUES.
WE HAD FUNDING AGENCY
REPRESENTATIVES THERE.
YOU CAN SEE FROM NCMRR, VETERANS
AFFAIRS, NCATS, NIDILRR, CDMRP
FROM DEPARTMENT OF DEFENSE AND
THE CRAIG NIELSON FOUNDATION.
ONE OF THE QUESTIONS, IS IT
REQUIRED TO MAKE SURE THAT YOU
HAVE THE RIGHT PARTNERSHIPS AND
SO FORTH WITH PATIENTS, WITH
PEOPLE DEVELOPING TECHNOLOGY AND
SO FORTH, IS THAT A REQUIREMENT,
WE'RE HEARD DISCUSSION EARLIER
TODAY HOW THIS MIGHT BE VERY
IMPORTANT IN HOW WE DETERMINE
GRANTS FUNDED AND HOW THEY WILL
BE REVIEWED.
AIM SHOWING INTERESTING TALKS,
SOME WAS TECHNOLOGY BASED, USING
THE SMARTPHONES FOR KINEMATIC
ANALYSIS IN THE REAL WORLD TO
DEALING WITH ISSUES WE DON'T
THINK ENOUGH ABOUT WHERE PEOPLE
HAVE BEEN INPATIENT REHAB, THEY
STRUCKEL, AND THEIR FAMILIES
STRUGGLE, WHEN THEY LEAVE
INPATIENT REHAB AND THERE'S A
GAP TRYING TO MAKE SURE THAT
THEY CAN CONTINUE TO PROGRESS.
AND WE HAD ANOTHER KEYNOTE
SPEAKER JIM KRAUSS TALKING ABOUT
HOW HE'S BEEN INVOLVED IN
LOOKING AT OUTCOME OF SPINAL
CORD INJURY FOR 50 YEARS, A
COHORT HIS PEOPLE HAVE FOLLOWED,
THIS YEAR IS THE 50th
ANNIVERSARY, THAT WE NEED TO
HAVE THOSE PEOPLE REALLY HAVE
INPUT INTO HOW WE DEAL WITH
THINGS BECAUSE THEY HAVE THE
LIVED EXPERIENCE OVER MANY
YEARS.
AND WE ALSO NEED TO GET PEOPLE
INVOLVED IN HOW WE DESIGN
EQUIPMENT AND DID SESSIONS ON
THAT.
AGAIN, CONTINUED WITH THE
BUILDING OF COMMUNITY
PARTNERSHIPS, WE WANT THIS TO BE
USABLE, MAKE SURE RESEARCH IS
INVOLVED IN THE LARGE HEALTH
CARE SYSTEMS AND HAD SESSIONS ON
LEARNING HEALTH SYSTEMS, KIND OF
THE ULTIMATE OF GETTING THINGS
OUT THERE.
FINALLY THERESA DID CLOSING
REMARKS, A VERY ENGAGING AND
INTERACTIVE RETREAT, ALL OF THE
VIDEOS AND PREVIOUS ONES ARE ON
THE WEBSITE, NCMRR.ORG, THIS IS
THE LINK FOR THE PAST RETREAT.
PLEASE TAKE A LOOK AT THOSE.
ANY QUESTIONS?
>> LET'S HAVE AMY SPEAK AND DO
QUESTIONS AT THE END.
>> OKAY, AMY, TELL ME WHEN TO
PROGRESS THE SLIDES.
>> HAPPY TO.
THANKS FOR HAVING ME.
I'M EXCITED TO TALK ABOUT THIS
IDEA OF COMMUNITY PARTNERSHIP
AND FAMILY ADVISORY GROUPS.
THIS WAS A MAJOR TOPIC OF
DISCUSSION AT OUR RETREAT.
I'LL DO A BRIEF OVERVIEW AND IF
WE HAVE TIME GIVE YOU A CASE
STUDY OF A SUCCESSFUL
PARTNERSHIP THAT'S REALLY
EVOLVED AS A CLINICAL TRIAL HAS
PROGRESSED.
I WANT TO START WITH TALKING
ABOUT ENRICHING RESEARCH AND A
DROP-THE-MIC STATEMENT.
I DON'T KNOW IF I NEED TO SAY
ANYTHING AFTER THAT BUT WHAT I
AND MANY COLLEAGUES WHO
PRESENTED AT OUR RETREAT WOULD
HAVE ASSERT IS A STUDY TEAM THAT
INCLUDES BOTH RESEARCHERS AND
COMMUNITY PARTNERS WHO CAN SHARE
THAT LIVED EXPERIENCE THAT JAMES
TALKED ABOUT AND INTEGRAL
MEMBERS OF THE RESEARCH TEAM
CONTRIBUTES TO PARTICIPANT
CENTERED RESEARCH PROCESS AND
OUTCOMES, IMPROVES RELEVANCE AND
MEANINGFULNESS OF THE STUDY, AND
ENRICHES RESEARCH EXPERIENCE FOR
EVERYONE INVOLVED.
AND I'M PULLING SOME INFORMATION
AS I PROGRESS THROUGH THIS FROM
DISCUSSION THROUGHOUT THE
RETREAT BUT I'M ALSO GOING TO
CREDIT MY PARTNERS AND THE
PARENT COUNCIL WHO REALLY
INFORMED A LOT OF THE MATERIAL
I'LL SHARE WITH YOU TODAY.
YOU CAN MOVE ON.
SO WHAT ARE FAMILY ADVISORY
COUNCILS?
FAMILY ADVISORY COUNCILS IN
TRADITIONAL SENSE DID WHAT IT
SOUND LIKE.
THEY TALKED ABOUT HOW THE STUDY
WAS PROGRESSING AND GAVE YOU
INPUT.
BUT WE'RE ARGUING THAT THESE
COUNCILS SHOULD BE SERVING AS
RESEARCH PARTNERS.
THESE ARE TEAMS OF FAMILIES, I
DO PEDIATRIC RESEARCH SO THAT'S
WHY I'M TALKING ABOUT FAMILIES,
BUT THIS COULD BE CAREGIVERS OF
ADULTS WITH DISABILITIES AS
WELL.
THIS COULD BE INDIVIDUALS WITH
DISABILITIES AS WELL.
THIS IS REALLY A COMMUNITY
PARTNER ADVISORY COUNCIL BUT
THEY ARE PROVIDING GUIDANCE AND
FEEDBACK ON ALL ASPECTS OF THE
TRIAL.
THESE ARE FOLKS PROVIDING INPUT
ON THE DESIGN AND RECRUITMENT
STRATEGIES, HOW YOU ARE
CONSENTING AND ENROLLING.
ARE THE OUTCOME MEASURES AND THE
PRIMARY VARIABLES OF INTEREST
ACTUALLY MEANINGFUL TO THE
POPULATIONS THAT YOU ARE
ATTEMPTING TO SERVE WITH YOUR
SCIENCE?
THEY WOULD BE PROVIDES INPUT
INTO PROTOCOL AND ADJUSTMENTS.
THIS GROUP IS ACTIVE IN TERMS OF
COMMUNICATIONS, HOW TO
COMMUNICATE INFORMATION TO THE
BROADER COMMUNITY AS WELL AS TO
POTENTIAL PARTICIPANTS AS WELL
AS TO PARTICIPANTS ENROLLED IN
THE STUDY.
THIS IS A GROUP THAT WILL HELP
YOU PLAN FOR DISSEMINATION.
THEY WILL IDENTIFY PATHS FOR
DISSEMINATION THAT COULD IMPROVE
THE DIFFUSION AND UPTAKE OF YOUR
RESULTS WHERE APPROPRIATE.
THE OTHER REALLY CRITICAL ROLE
THAT THESE COUNCILS CAN SERVE IS
TRAINING TO YOUR
INTERVENTIONIST, YOUR
PROFESSORS, STUDY COORDINATORS,
PERSONNEL INTERACTING WITH
FAMILIES, WITH POTENTIAL
PARTICIPANTS AND CURRENT
PARTICIPANTS IN YOUR WORK AND
HOW TO COMMUNICATE IN A
SENSITIVE RESPECTFUL LIVED
EXPERIENCE WAY.
WE HAVE USED OUR PARENT COUNCIL
TO DO THIS.
I'LL TALK ABOUT THAT LATER.
IT'S BEEN VERY EFFECTIVE.
THEY ARE ABLE TO PROVIDE
RESOURCES FOR IN OUR CASE
FAMILIES AND MAY COMMUNICATE
WITH THOSE PARTICIPANTS AND
PARTICIPANT FAMILIES,
DISSEMINATE KNOWLEDGE THROUGH
COMMUNITY ACTIVITIES,
PRESENTATIONS, ADVOCACY GROUPS,
SOCIAL MEDIA, OUR PARENT COUNCIL
IS PUBLISHING A PAPER, FOR
EXAMPLE, AND IS GIVING NATIONAL
TALKS ALL THE TIME.
AND THEN THIS IS ALSO A GROUP
THAT CAN ASSIST WITH RECRUITMENT
AS THEY SPEAK WITH FAMILIES
INTERESTED IN THE STUDY AND HELP
DIRECT THEM TOWARDS COORDINATORS
WHO MIGHT BE ABLE TO GIVE THEM
THAT MORE DETAILED INFORMATION
AND ASSESS ELIGIBILITY.
NEXT SLIDE.
IF YOU ARE INTERESTED IN
INTEGRATING COMMUNITY PARTNERS
IN THIS WAY, WHETHER YOU CALL IT
AN ADVISORY COUNCIL OR THESE ARE
JUST MEMBERS OF YOUR RESEARCH
TEAM OR YOU DECIDE TO HAVE BOTH,
ALSO POSSIBLE.
THERE'S SOME IMPORTANT
CONSIDERATIONS AS YOU'RE MOVING
FORWARD WITH WRITING AND
DESIGNING YOUR PROJECT.
AND THESE ARE PEOPLE WHO SHOULD
BE AT THE TABLE FROM THE START
WHEN YOU BEGIN THE WRITING
PROCESS AND THAT INITIAL IDEA
THAT INITIAL PLANNING PROCESS.
AND THINK ABOUT THEIR ROLES.
FOR EXAMPLE, RECRUITMENT.
WILL THAT ADVISORY COUNCIL OR
WILL THAT TEAM REVIEW YOUR
MATERIALS IF YOU COULD SEE WHAT
OUR TEAM PUT TOGETHER VERSUS
WHAT THE FAMILY ADVISORY TEAM
PUT TOGETHER, IT'S NIGHT AND
DAY.
SO MUCH BETTER ONCE WE GOT OVER
OURSELVES AS SCIENTISTS AND LET
FAMILIES TAKE CONTROL.
BUT WILL THEY BE INVOLVED, WILL
THEY NEED TO BUILD FACEBOOK
PAGE, WILL THEY BE INVOLVED WITH
SOCIAL MEDIA CAMPAIGNS AND TO
WHAT EXTENT WILL THEY BE
COMMUNICATING WITH YOUR
PARTICIPANTS AND IF THAT'S THE
CASE THEN WHAT SORTS OF IRB
CONSIDERATIONS MIGHT BE PART OF
THAT.
SO WILL THEY BE COMMUNICATING
WITH PARTICIPANTS THROUGHOUT THE
TRIAL, AGAIN ARE THERE
REGULATORY CONSIDERATIONS, DO
YOU WANT TO BUILD SOME TIME FOR
TRAINING INTO YOUR GRANT
APPLICATION?
HOW ARE THEY GOING TO BE
INVOLVED DURING IMPLEMENTATION
OF THE TRIAL, WHAT IS THEIR ROLE
AS SCIENTIFIC DECISION MAKERS,
AS A TRIAL PROCEEDS YOU DO MAKE
ADJUSTMENTS AND DO CHANGE THINGS
AS YOU GO.
AND IS THIS TEAM INVOLVED, IF
THEY ARE TRUE RESEARCH PARTNERS
I WOULD ARGUE YES SO WHAT IS
YOUR CAMPAIGN COMMUNICATION, ARE
THEY MEMBERS OF THE EXECUTIVE
STEERING COMMITTEE FOR EXAMPLE,
WILL THEY HAVE DISTINCT ROLES
THAT MAYBE FALL OUTSIDE OF
SCIENTISTS PURVIEW SO A SURVEY
OR A QUALITY IMPROVEMENT TOOL OR
SOMETHING THEY HAVE DESIGNED TO
SOLICIT FEEDBACK ABOUT THE
TRIAL.
AND THIS CAN BE USED TO INFORM
FUTURE STUDIES AND IT MAY BE
THAT THEY HAVE A RELATIONSHIP
WITH PARTICIPANTS THAT INVITE
HONEST FEEDBACK THAT PERHAPS
FAMILIES WOULD BE HESITANT TO
PROVIDE IF IT WAS COMING BACK TO
THE SCIENTIFIC TEAM.
SO LOTS TO THINK ABOUT WHEN AND
IF YOU ARE PLANNING ON DOING
THIS.
NEXT SLIDE.
SO WHEN TO DO THIS, WHEN TO
ENGAGE THEM AS I SAID EARLIER,
ENGAGE YOUR TEAM, YOUR COMMUNITY
PARTNERS, FROM THE GET-GO.
THIS IS AT THE TIME OF DESIGN,
AT THE TIME OF GRANT WRITING,
THEY NEED TO CONTRIBUTE TO STUDY
DESIGN, THEY NEED TO HELP YOU
THINK THROUGH YOUR POPULATION,
THEY NEED TO HELP YOU THINK
THROUGH THAT RECRUITMENT.
ONE REALLY CRITICAL PIECE OF
THIS TO EMPHASIZE IS THAT
OUTCOME MEASURE PIECE, THAT
THESE ARE THE FOLKS WHO CAN TELL
YOU AS THE SCIENTIST WHAT
OUTCOMES ARE MOST IMPORTANT TO
THEM, TO THEIR PARTICIPATION IN
LIFE, TO DAILY FUNCTIONING, TO
THEIR GOALS.
LISTEN HARD TO YOUR COMMUNITY
PARTNERS WHEN YOU ARE DEVELOPING
OUTCOME MEASURES.
THEY ALSO CAN SPEAK TO THE
BURDEN OF WHAT YOU'RE PROPOSING,
SO ARE YOUR ASSESSMENTS TOO
LONG, TOO COMPLICATED, DO THEY
NEED TO BE SCHEDULED OVER TWO
DAYS, WHAT DOES THAT MEAN IN
TERMS OF FAMILY BURDEN, IS YOUR
TREATMENT PROTOCOL TOO
BURDENSOME, DO YOU NEED TO THINK
THROUGH HOW YOU'RE DELIVERING
SOMETHING OR HOW YOU'RE
EXPLAINING WHAT THAT
PARTICIPATION WILL TRULY MEAN TO
A FAMILY, SO THAT'S ANOTHER
REALLY CRITICAL PIECE THAT THEY
CAN INFORM.
AND THEN LOTS OF CONSIDERATION
AROUND HOW YOU'RE GOING TO
COMMUNICATE, HOW YOU'RE GOING TO
BRING THIS TEAM TO THE TABLE, TO
THE WHOLE SCIENTIFIC TEAM'S
TABLE AND COMMUNICATE.
ALL RIGHT.
NEXT SLIDE.
YOU HAVE TO PAY THEM.
I CAN'T EMPHASIZE THIS ENOUGH.
THESE ARE YOUR COMMUNITY
PARTNERS.
THEY ARE PART OF YOUR TEAM.
THEY HAVE TO BE BUILT INTO YOUR
BUDGET.
IT'S NOT ONLY PAYING THEM, BUT
IT IS ALSO PAYING FOR TRAVEL,
PAYING FOR CONFERENCES IF THEY
ARE GOING TO DISSEMINATE THEIR
WORK WITH YOU, SO DON'T FORGET
YOUR COMMUNITY PARTNERS IN YOUR
BUDGET AND YOUR BUDGET
JUSTIFICATION BECAUSE THEY ARE
YOUR RESEARCH PARTNERS AND WE
NEED TO THINK OF THEM THAT WAY,
IN EVERY WAY.
NEXT SLIDE.
COMMUNICATION IS IMPORTANT.
I PUT THIS IN HERE BECAUSE --
THIS IS FROM SOME LEARNED
EXPERIENCE.
YOUR COMMUNITY PARTNERS ARE
GOING TO PROVIDE TO YOU, THE
SCIENTISTS, INFORMATION ON SORT
OF THAT AS WE KEEP SAYING THIS
LIVED EXPERIENCE, THE PRACTICAL
REALITIES OF LIFE.
THEIR PERSPECTIVES, HOW THOSE
ARE INTERSECTING WITH THE
SCIENCE THAT YOU'RE PROPOSING.
EDUCATION, EDUCATING US ABOUT
THAT IS CRITICALLY IMPORTANT FOR
BUILDING BETTER STUDIES AND
BETTER RESEARCH THAT IT'S MORE
IMPLEMENTABLE, EASIER FOR UPTAKE
AND PROBABLY MORE MEANINGFUL.
OUR JOB IS ABOUT CONTRIBUTING
EXPERTISE WE HAVE ABOUT
SCIENTIFIC DESIGN AND
METHODOLOGY AND WHAT IS
REGULATORY COMPLIANCE AND WHAT
IS AN IRB, WHAT IS EQUIPOISE,
INFORMED CONSENT, MAKING SURE
OUR COMMUNITY PARTNERS
UNDERSTAND THOSE PRACTICALITIES
OF SCIENCE, THIS IMPROVES THE
QUALITY OF THE PROJECT AND
PROVIDES YOU WITH WAYS OF
COMMUNICATING ABOUT WHY SOME
THINGS, MAYBE WE WANT TO HAVE
HAPPEN, BUT WE WILL HAVE
CHALLENGES IMPLEMENTING THEM AND
SO HOW CAN WE MAYBE WORK THROUGH
THAT BY UNDERSTANDING LIVED
EXPERIENCE VERSUS REGULATORY
CONSTRAINTS WE COULD HAVE.
BUT THAT COMMUNICATION HAS TO BE
OFTEN, HAS TO BE OPEN, AND THERE
NEEDS TO BE AN INTENTIONAL
MECHANISM FOR FACILITATING THAT
KIND OF COMMUNICATION.
THIS IS INFANTS WITH PERINATAL
ARTERIAL ISCHEMIC STROKE, WE
HAVE A PARENT COUNCIL.
WHEN WE STARTED THEY WERE AN
ADVISORY COUNCIL.
SINCE THEN, WE HAVE INTEGRATED
THEM INTO THE STUDY MUCH MORE
INTENSIVELY AND INTENTIONALLY.
THIS IS A GROUP OF PARENTS OF
CHILDREN WITH DISABILITIES, AND
THEY HAVE INFORMED US HOW TO
RECRUIT AND TALK TO FAMILIES AND
WORK WITH FAMILIES.
THEY HAVE WORKED WITH THERAPISTS
AND ASSESSORS IN FAMILY
COMMUNICATION, THEY HAVE BUILT
RESOURCES FOR FAMILIES
PARTICIPATING IN THE STUDY,
UNDERSTANDING SOME BURDENS
ASSOCIATED WITH THINGS LIKE
TRAVEL, THEY PARTICIPATE IN OUR
EXECUTIVE STEERING COMMITTEE, ON
THE PUBLICATIONS COMMITTEE.
CO-PRESENTERS WHEN WE TALK ABOUT
THE TRIAL.
THEY ARE INVOLVED IN JUST ABOUT
EVERY STEP OF THE TRIAL.
AND HAVE BEEN ACTIVE
PARTICIPANTS, IN WAYS WE HAVEN'T
EVEN PANTS PATED WHEN WE
STARTED.
IT'S BEEN A LEARNING CURVE FOR
AWFUL US BUT WE'RE IN -- FOR ALL
OF US BUT WE'RE IN A TERRIFIC
PLACE AND THE TRIAL IS MORE
ENRICHED AND SUCCESSFUL BECAUSE
OF BECAUSE OF THEIR ACTIVE
PARTICIPATION.
ONE MINUTE OVER.
HOPEFULLY WE HAVE TIME FOR
QUESTIONS.
>> WE WILL OPEN IT UP FOR
COMMENTS, QUESTIONS.
>> I WENT ON YOUR WEBSITE
LOOKING FOR THE MINUTES OR VIDEO
OF THE CONFERENCE, IS IT THERE?
>> IT'S ON THE WEBSITE BUT WE
HAVE PEOPLE JOIN THE NETWORK,
YOU FILL OUT A FORM, SO ANYBODY
CAN JOIN.
WE'RE KEEPING -- MAKING SURE
WE'RE HITTING ALL THE
POPULATIONS WE NEED SO WE KEEP
TRACK OF WHO JOINS OUR NETWORK.
>> I WANT TO ECHO WHEN YOU BRING
THESE PEOPLE ON TO TREAT THEM
LIKE PROFESSIONALS, REIMBURSE
THEM.
IT'S OKAY WITH NIH.
WE'LL DEAL WITH THAT.
AND TO ACCOMMODATE THEM.
THEIR LIVES MAY BE MORE COMPLEX
THAN YOURS.
IF YOU TREAT THEM LIKE
PROFESSIONALS, YOU'LL GET THEIR
COMMITMENT TO WORK WITH YOU.
>> ONE THING WE DID AT AMERICAN
SOCIETY OF NEUROREHABILITATION
MEETING THIS PAST YEAR WE HAVE
NUMEROUS PEOPLE PARTICIPATING IN
RESEARCH AND THEIR CARETAKERS
AND FAMILY COME TO THE POSTER
SESSION.
IT WAS CROWDED BUT THEY GOT TO
SEE SOME OF THE RESEARCH GOING
ON BESIDES THE STUDIES THEY WERE
INVOLVED WITH, AND ALSO SEE
WHAT'S THE PROGRESS OF STUDIES
THEY WERE INVOLVED WITH AND THE
PEOPLE WERE THRILLED.
THERE'S MANY WAYS TO ENGAGE THE
COMMUNITY FROM CONCEPTION OF
IDEA TO IMPLEMENTATION.
THANKS FOR POSTING THE LINK.
>> THIS IS JOE BONNER, A PROGRAM
OFFICER.
AMY, WONDERING IF YOU COULD TALK
ABOUT HOW SOME INSTITUTIONS
PERSPECTIVE, WERE YOUR COUNCILS
BROUGHT ON AS PART-TIME
EMPLOYEES, HOW DID YOU DRAW THE
LINE TO MAKE THOSE DECISIONS?
>> SO, OUR COUNCIL MEMBERS ARE
PAID ANNUAL STIPEND.
IT'S A MULTI-INSTITUTION TRIAL
SO THE PRIME INSTITUTION
VIRGINIA TECH PAYS ALL THE
PARENTS OUT OF VIRGINIA TECH,
ALL PAID AS BASICALLY AN ANNUAL
STIPEND, ALL THE REIMBURSEMENTS
FOR CONFERENCES AND TRAVEL AND
THINGS LIKE THAT ARE PAID OUT OF
VIRGINIA TECH SO I THINK THEY
SUBMIT AN INVOICE AND SOME TAX
FORMS.
AND WE DON'T HIRE THEM AS
EMPLOYEES WITH THIS CURRENT
TRIAL BUT I DON'T KNOW THAT WE
COULDN'T.
>> COULD YOU DESCRIBE IT AS A
HEAVY LIFT?
>> IT WAS STRAIGHTFORWARD, I
WOULD SAY.
THAT'S BEEN A STRAIGHTFORWARD
PROCESS FOR US.
THEY ARE COMING IN ALMOST LIKE
INDEPENDENT CONTRACTORS, SO
PAID -- IT'S LIKE BEING PAID AN
HONORARIUM, RIGHT?
I SIGH THAT BECAUSE I'M AT OHIO
STATE, AND VIRGINIA TECH IS
PAYING THEM.
TO SAY IT'S REALLY EASY.
>> JOE KNOWS IT'S EASY TO GET
PAID, RIGHT, JOE?
>> OTHER QUESTIONS?
COMMENTS?
>> SO I MEAN WE KNOW THAT
INVOLVING FAMILY AND PEOPLE WITH
LIVED EXPERIENCES NOT
NECESSARILY EASY THING.
IF YOU COULD -- WHAT YOU
DESCRIBE, AMY, WAS ESSENTIALLY
I'M SURE DIDN'T COME UP
OVERNIGHT IN TERMS OF WHAT YOU
UNFOLDED AND WHAT YOU'RE DOING
WITH THIS CLINICAL TRIAL.
I WANTED TO ASK IF YOU COULD
REFLECT WHEN YOU BEGAN TO DO
THIS WHAT WERE SOME INITIAL
STEPS YOU TOOK TO GET TO THIS
POINT NOW WHERE YOU ACTUALLY
HAVE THIS AWESOME ADVISORY
COUNCIL.
>> SO I THINK ONE OF THE MOST
EFFECTIVE STRATEGIES WE USED WAS
COMMUNICATION REGULAR MEETING
TIME.
WE HAVE TIME SET ASIDE
CONSISTENT.
RIGHT NOW ONCE A MONTH BUT
INITIALLY WE SET UP SEVERAL
STRUCTURED TIMES TO GET TOGETHER
WITH CARES OF THE PARENT
COUNCIL, RECRUITING PARENTS, WE
HAD A MEETING THAT WAS A HYBRID
MEETING.
WE HAD THE PARENT COUNCIL CHAIRS
ATTEND OUR P.I. KICKOFF MEETING
FOR THE TRIAL WHERE WE BROUGHT
EVERYBODY INTO ONE SPACE AND
REALLY TALKED ABOUT STANDARD
OPERATING PROCEDURES, REVIEWED
THE TRIAL AND ALL THE THINGS YOU
DO.
THE PARENTS WERE PART OF THAT.
THE PARENTS GAVE A PRESENTATION
ABOUT THEIR ROLE AND HOW THEY
WOULD BE REACHING OUT TO
INVESTIGATORS.
I THINK WE SOCIALIZED EARLY
INTENTIONALLY, IN A STRUCTURED
WAY.
OUR CO-CHAIRS FOR THE PARENT
COUNCIL HAVE ROTATED.
BUT AT THE TIME AND NOW WERE
FABULOUS SO THEY WERE VERY
COMFORTABLE GETTING UP IN FRONT
OF A ROOM OF SCIENTISTS AND
SAYING THIS IS WHO WE ARE AND
WHY WE'RE HERE.
THEY HAVE ROLES AND
RESPONSIBILITIES, WE DISTRICTED
THAT AS WELL.
I GUESS IT GOES BACK TO LOTS OF
COMMUNICATION THAT WAS PRETTY
INTENTIONAL.
>> FOLLOW QUESTION, TO BEGIN
DIALOGUE, SO THIS FAMILY COUNCIL
BEFORE THEY BECAME A PART OF
YOUR GRANT ALREADY EXISTED OR
YOU WENT OUT AND CURATED THE
GROUP OF PARENTS THAT YOU'RE
WORKING WITH, THE FAMILY MEMBERS
YOU'RE WORKING WITH IN THESE
DELIBERATE STRUCTURED DIALOGUES,
I WANTED TO CLARIFY THAT.
>> YEAH, NO, SO WE HAD A PARENT
WHO HAD BEEN INVOLVED WITH THE
GRANT WRITING, WHO WAS -- WHO
THE PARENT COUNCIL WAS INCLUDED
IN THE GRANT AND SHE WAS
INVOLVED IN TALKING THROUGH WHAT
THAT MIGHT LOOK LIKE, WROTE A
LETTER OF SUPPORT, SO SHE SERVED
AS ONE OF THE INITIAL CO-CHAIRS.
WE RECRUITED ANOTHER CO-CHAIR
AND THEN FROM THERE THEY WORKED
WITH ALL OF OUR SITES, SITES
AROUND THE COUNTRY FOR THE
WHILE, AND HAD THE SITES TRY AND
NOMINATE FAMILIES THAT THEY KNEW
OF WHO MIGHT BE INTERESTED, AND
SORT OF DID A WORD OF MOUTH
AFTER THAT AS WELL TO TRY AND
RECRUIT.
I WOULD SAY INITIALLY QUITE
INTENTIONAL BUT GREW FROM THERE
AND WE TRUSTED THAT THE COUNCIL
WOULD RECRUIT THE FAMILY MEMBERS
THEY FELT WOULD BE BEST FOR THAT
ROLE SO WE LARGELY STAYED OUT OF
THAT PROCESS AND WE WERE
CONSULTANTS.
>> THANK YOU AGAIN FOR A VERY
GREAT DISCUSSION.
WE'RE GOING TO TAKE A BREAK HERE
AND PICK BACK UP AT 3:30.
>> THANKS TO RICK AND AMY.
>> THANKS.
I'M GOING TO NORTH CAROLINA.
WE'LL GET STARTED WITH THE
AFTERNOON SESSION.
>> IT'S MY HONOR TO INTRODUCE A
COLLEAGUE AND FRIEND, PATRICIA
DORN, A DIRECTOR OF REHAB
RESEARCH AT THE DEPARTMENT OF
VETERANS AFFAIRS, AN
AUDIOLOGIST, HEARING SCIENTIST
BY TRAINING, MAINTAINS
CERTIFICATION IN THAT, AND SHE'S
GOING TO TELL US ABOUT
ACTIVITIES AT THE V.A. CENTER
AND TREMENDOUS SYNERGY THAT HAS
WITH WHAT WE'RE DOING, A GREAT
CHANCE TO DO RESEARCH IN SUPPORT
OF OUR VETERANS.
TRISH?
>> GREAT.
THANK YOU.
I'M REALLY EXCITED TO ADD TO
YOUR KNOWLEDGE ABOUT THE V.A.,
ABOUT THE RESEARCH PROGRAM, AND
SPECIFICALLY ABOUT THE REHAB
RESEARCH AND DEVELOPMENT
HAPPENING THERE.
THIS IS REALLY AN OVERARCHING
SLIDE THAT TELLS THE BIG PICTURE
STORY.
THERE'S BEEN A RESEARCH PROGRAM
IN V.A. FOR VETERANS IN ONE FORM
OR ANOTHER FOR ALMOST 100 YEARS,
AND THAT'S INSCRIBED ON THE MAIN
BUILDING, THE QUOTE BY ABE
LINCOLN, 810 VERMONT AVENUE AND
SOME OF THE OTHER V.A.
FACILITIES AROUND THE COUNTRY.
SO, DOING RESEARCH IN THE V.A.
THAT MEANS YOU'RE SERVING THOSE
WHO HAVE SERVED THE NATION AND
IN V.A. WHAT WE DO WITH RESEARCH
IS DISCOVER KNOWLEDGE, WORK IN A
PRE-CLINICAL ALL THE WAY THROUGH
HEALTH SERVICES SYSTEM LEVEL
SPACE, WITH THE INNOVATIONS
CREATED AND THAT'S TO ADVANCE
HEALTH CARE OF VETERANS AND THE
NATION.
WE HAVE A ROBUST INTRAMURAL
RESEARCH PROGRAM TO DEVELOP
CLINICIAN RESEARCHERS, HEALTH
CARE LEADERS, AND V.A. PROVIDES
A LIFETIME OF CARE FOR THE
VETERANS, THE ENTIRE RESEARCH
PIPELINE THERE.
THIS IS A STREAMLINED VIEW OF
THE AGENCY, BUT A GOOD IDEA TO
KNOW WHERE THE RESEARCH PROGRAM
LIVES IN V.A.
THERE'S THE SECRETARY OF THE
AGENCY, THREE MAIN SECTIONS TO
V.A., BENEFITS ADMINISTRATION,
SO THAT'S WHERE THE DISABILITY
BENEFITS, VOCATIONAL REHAB
OCCUR, NATIONAL CEMETERY
ADMINISTRATION, CEMETERIES,
BURIALS, MAINTENANCE, AND VHA
THAT CAN HELP IN ADMINISTRATION,
THE UNDERSECRETARY FOR HEALTH,
OFFICE OF THE DEAN, DISCOVERY
AFFILIATION NETWORKS, BELOW THAT
IS OFFICE OF RESEARCH AND
DEVELOPMENT WHERE THE RESEARCH
PROGRAMS AND RESEARCH SERVICES
EXIST, GIVING YOU A SENSE OF
WHAT THE STRUCTURE LOOKS LIKE,
SUPER STREAMLINED.
SO V.A., WELL, WE ARE THE
LARGEST INTEGRATED HEALTH CARE
SYSTEM THAT EXISTS IN THE
COUNTRY TO SERVE THOSE WHO HAVE
SERVED, OVER 9 MILLION VETERANS
COME FOR CARE.
WE HAVE HUNDREDS OF THOUSANDS OF
CLINICAL FOLKS, THERE'S OVER 150
MEDICAL CENTERS THROUGHOUT THE
COUNTRY.
THERE IS ADVANCED ELECTRONIC
HEALTH CARE RECORD, AND THIS
RECORD, VETERAN CAN GO INTO ANY
FACILITY AND GET CARE IF THEY
ARE TRAVELING AROUND THE
COUNTRY, THE RECORD IS
AVAILABLE, CLINICIAN WHO SEES
THEM WILL KNOW WHAT'S GOING ON
WITH THEIR FELT STATUS.
AND THAT RECORD SERVES -- IS A
GREAT SOURCE FOR SETTING UP
STUDIES UNDERSTANDING THE
POPULATION THAT'S OUT THERE FOR
THE RESEARCH OF INTEREST.
THE ACADEMIC AFFILIATE NETWORKS,
ALL THESE ARE AFFILIATED LOCALLY
WITH MEDICAL CENTER, WITH THE
UNIVERSITIES.
AND THIS IS A VERY STRONG
AFFILIATION.
WE ARE A TRAINING GROUND FOR THE
MAJORITY OF CLINICIANS,
INTERNSHIPS, RESIDENCIES, AT
SOME POINT MOST HAVE SERVED
VETERANS THAT WAY.
THE MILLION VETERAN PROGRAM IS
THE WORLD'S LARGEST
BIOREPOSITORY.
BEFORE VETERANS DAY THIS PAST
NOVEMBER 11 THEY DID HIT A
MILLION IN THERE, INTO THE
DATABASE.
THEY DID HIT A MILLION WHICH IS
HUGE.
THERE IS A PROCESS IN PLACE FOR
INVESTIGATORS TO SEEK USE OF,
QUERIES MVP DATABASE SO IT'S A
FABULOUS RESOURCE.
TECHNOLOGY TRANSFER PROGRAM
THAT'S ALSO VERY ROBUST ASPECT,
THE P.I.s, INVESTIGATORS IN
V.A., THE TTP PROGRAM WORKS WITH
THEM, THEY NEED TO MAKE
DISCLOSURES TO PROTECT THEIR
INTELLECTUAL PROPERTY, IF
THERE'S ANY DEVELOPMENT OFF OF
THIS ANY PRODUCTS THAT GET OUT,
THERE'S ROYALTY SHARING PLANS
THAT GO TO THE INVESTIGATOR, TO
THE FACILITY, AND TTP HELPS WITH
COMMERCIALIZATION, PART OF
TRANSLATION TO MOVE THINGS
ALONG.
NOW, THE V.A.
THE BUDGET WAS $916 MILLION,
UNDER C.R., DEDICATED FOR
VETERANS NEEDS TO DO THE
RESEARCH FOR VETERANS IN THE
FACILITIES.
THAT'S CALLED THE MEDICAL AND
PROSTHETICS RESEARCH
APPROPRIATION THAT'S A SPECIFIC
NAME FROM CONGRESS, WE'RE
DATABASE RICH, MACHINE LEARNING,
A.I., ALL OF THAT GREAT
RESOURCES.
IN TERMS OF PRIORITIES, ORD
PRIORITIES, THERE'S STRATEGIC
ONES, CLINICAL ONES, IT'S ABOUT
GETTING VETERANS INTO TRIALS,
MAKING THAT REAL WORLD IMPACT
REALLY HAPPEN, MAKING THE DATA
WORK, D.E.I. EFFORTS WHICH I'LL
TELL YOU MORE ABOUT SOON.
WHAT I THINK IS STRENGTHENING
AND ADDING TO WHAT IS ALREADY A
STRONG COMMUNITY THAT HAPPENS IN
THE V.A. RESEARCH COMMUNITY.
CLINICAL PRIORITIES, SUICIDE
PREVENTION, SUICIDE PREVENTION,
PRECISION ONCOLOGY, COVID-19,
YOU PROBABLY COULD HAVE LISTED
THIS YOURSELF BY LISTENING TO
THE NEWS AND WHAT'S OF INTEREST
TO THE WHITE HOUSE CONGRESS,
STAKEHOLDERS, OTHER
STAKEHOLDERS, VETERANS, VETERANS
SERVICES ORGANIZATIONS.
THAT IS WHERE THESE COME FROM.
DIVERSITY, EQUITY, AND INCLUSION
EFFORTS, JULY 2020 A WORKING
GROUP WAS STOOD UP IN ORD, TO
PROTECT D.E.I. WITHIN ORD,
WITHIN THE STAFF AS WELL AS WITH
THE RESEARCHERS OUT THERE, AND
TO BUILD A PIPELINE TO GET EARLY
CAREER INVESTIGATORS IN FROM
UNDERREPRESENTED POPULATIONS, TO
STRENGTHEN EQUITY AND
PARTNERSHIP WITH OFFERSES,
ACADEMIC INSTITUTIONS,
STAKEHOLDER ENGAGEMENT BOARD.
THE GROUP HAS BEEN BUSY
CONDUCTING WORKSHOPS, SEMINARS,
REVIEWER TRAINING, FOR PEOPLE
FROM DIVERSE BACKGROUNDS,
TOUCHING ON THE IMPLICIT BIAS,
THEY HAVE ESTABLISHED SOME
RECRUITMENT SITES, CONNECTION
WITH MOREHOUSE AND ATLANTA V.A.,
FOR OUTREACH TO HBCUs, A
SUMMER RESEARCH PROGRAM AT ABOUT
20 V.A.s, WHERE THE EARLY
UNDERGRADS CAN GET A COUPLE
MONTHS OF EXPERIENCE, TRAINING,
HOPEFULLY THE SPARK HAPPENS AND
THEY WANT TO KEEP GOING.
THE RESEARCH SUPPLEMENTS TO
PROMOTE DIVERSITY, THAT IS
ADDING MONEY TO THE
INVESTIGATORS FUNDED STUDIES TO
BRING IN UNDERREPRESENTED EARLY
CAREER WITH THE EXTENT THOSE
FOLKS ARE GOING TO MAKE
APPLICATIONS TO OUR CAREER
DEVELOPMENT AWARD PROGRAM, AND
THE OTHER SUPPLEMENT, THIS IS
ADDING DOLLARS TO V.A.
INVESTIGATORS FOR THEIR STUDIES
TO HAVE CONNECTIONS AND
PARTNERSHIPS WITH RESEARCHERS AT
MINORITY-SERVING INSTITUTIONS
AND REALLY TO FORM THOSE
CONNECTIONS AND THAT'S WITH
FOLKS AT DIFFERENT LEVEL OF
THEIR CAREER.
NOW GETTING MORE SPECIFIC ABOUT
REHAPPEN PROGRAM, I'LL MAKE
BRIEF COMMENTS, SO YOU MAY HAVE
HEARD OR KNOW, YES, IT'S TRUE
THAT VA OFFICE OF RESEARCH AND
DEVELOPMENT IS GOING UNDER --
UNDER RESOURCE, IT'S IN PROCESS,
NOT COMPLETE, THAT'S WHY YOU
WON'T SEE ME SHOWING YOU SLIDES
BECAUSE IT'S NOT DONE BUT THE
MAIN TAKEAWAY POINT IS THAT
REGARDLESS OF HOW WE DO ORGANIZE
OURSELVES DOWNSTREAM, AS I SAID,
THIS PROGRAM IS ALMOST 100 YEARS
OLD, AND SO IT'S VERY STRONG,
IT'S RESILIENT AND THE MISSION
DOESN'T CHANGE TO IMPROVE HEALTH
AND LIVES OF VETERANS.
NEED TO HAVE RESEARCHERS DO THE
RESEARCH IN DIFFERENT AREAS AND
DOMAINS THAT DOESN'T CHANGE,
THAT'S THE MESSAGE I'M TELLING
INVESTIGATORS AND TELLING
EVERYBODY TO KEEP YOUR EYE ON
THE BALL ABOUT IMPROVING LIVES,
HEALTH OF VETERANS, AND KEEP THE
RESEARCH COMING IN, THAT'S ABOUT
FUNCTIONAL IMPROVEMENT,
INDEPENDENCE, VETERAN GETTING
BACK TO THE LIFE WHATEVER THEY
WANT TO HAVE IN THEIR LIFE OR
BRING BACK, THAT'S THE CORE.
THE RESEARCH, WE DO FUND
PRE-CLINICAL THROUGH A DOORSTEP
OF HEALTH SERVICES RESEARCH,
VERY BIG ROBUST PROGRAM.
THEY NEED TO BE THINKING ABOUT
FUNCTIONAL OUTCOMES, RESEARCH
THEY ARE DOING, WHAT IS THIS
GOING TO DO FOR THE VETERAN,
STEPS TO GET TO THE VETERAN,
THEY NEED TO THINK IT ALL THE
WAY THROUGH BECAUSE THAT'S WHAT
THIS PROGRAM IS ABOUT.
AND WE THINK ABOUT REHAPPEN
RESEARCH, KEEP IN MIND VETERANS
MAY EXPERIENCE DISABILITY VIA
DEPLOYMENT, FITNESS FOR DUTY,
ILLNESS OR INJURY AFTER THEY
HAVE COME INTO MILITARY SERVICE,
OR WHEN THEY ARE A VETERAN.
THOSE ARE THE POINTS AT WHICH
THEY MAP MAY EXPERIENCE AND HAVE
DISABILITIES OCCURRING.
SO THE RESEARCH IT MAY RESTORE
FUNCTION OR SEEK THROUGH THE
RESEARCH TO RESTORE FUNCTION IF
POSSIBLE, OR REPLACE THROUGH
TECHNOLOGY, THROUGH DEVICES,
THROUGH OTHER INTERVENTIONS, BUT
THE BOTTOM LINE IT'S RETURNING
THE VETERAN WITH THE DISABLING
CONDITION TO AS FULL A LIFE AND
INTEGRATED INTO THEIR LIFE AND
THEIR COMMUNITY AS POSSIBLE.
AND THIS IS THE BREADTH, IT'S A
MULTIPURPOSE SLIDE, THE BREAD
THERE -- BREADTH OF THE PROGRAM
AND THE TEAM, THE PEOPLE ARE
WHAT MAKES IT HAPPEN.
AND SO WE -- REMEMBER WITH THESE
PROGRAMS, BY THE WAY, WE KNOW
RESEARCH IS NOT -- RESEARCHERS
COME IN WITH IDEAS AND WANT TO
WORK IN AREAS THAT ARE NOT
SITTING IN THE BOX.
THERE'S TBI WITH LOOKING AT
MENTAL HEALTH INTERVENTION OR
SENSORY, SO WE MAKE A BEST FIT
FOR THAT ARE APPLICATION WHEN IT
COMES IN.
SO WE HAVE MUSCULOSKELETAL
HEALTH AND FUNCTION WITH DR.
BRINDLE, REHABILITATION
INTERFERING, CHRONIC MEDICAL
CONDITION AND AGING, SOCIAL
REINTEGRATION AND SCID PAIN
REJERCH RATION, BRAIN HEALTH AND
INJURY WITH DR. PACIFICO, AND
COVERING THE CAREER DEVELOPMENT
CAREER SCIENTIST I'LL TELL YOU
MORE ABOUT CENTERS IS DR.
BROWER, THERE'S MYSELF, THE
DIRECTOR, THE DEPUTY,
ADMINISTRATIVE OFFICER, THE PARS
GROUP, ADMINISTRATOR, AND
MANAGEMENT ANALYST, PROGRAM
SPECIALISTS, AND PROGRAM
ANALYST.
WE WORK SOUP TO NUTS.
WE DO THE DEVELOPMENT, GENERATE
RFAs, POST THEM, DO SCIENTIFIC
PEER REVIEW.
WE USE THE ERA SYSTEM TO DO THIS
THROUGH A CONTRACT WITH OUR
FORMS.
WE DO THE FUNDING, FUNDING
DECISIONS, OVERSIGHT, THE WHOLE
CYCLE.
THESE ARE THE PEOPLE INVOLVED IN
MAKING THAT WHOLE PROCESS AND
THE WHOLE CYCLE WORK.
AND THERE'S AN ASSISTANT TO ME
AND DOES OTHER THINGS FOR US.
AND OUR R&D.
IN ADDITION TO UNDER THE REGULAR
PARENT RFAs RECEIVING
APPLICATIONS IN THOSE BROAD
PROGRAM AREAS, WHICH WE HAVE
PURVIEW STATEMENTS ABOUT, WE
ALSO HAVE SPECIAL EMPHASIS IN
PRIORITY AREAS, SOME ARE
TRICKLEDOWN FROM BROADER
PRIORITIES AT THE TOP WITH ORD,
BUT IT'S ALL DONE, ALL THIS WORK
IS DONE WITHIN THE CONTEXT OF
REHABILITATION FUNCTION
OUTCOMES, PATIENT CENTERED, ALL
OF THAT.
THEY DO GET UPDATED, PRIORITY
AREAS GET UPDATED, AS THE NEEDS
OF VETERANS ARISE, STAKEHOLDER
INTEREST, THINGS LIKE THAT.
SO, WE HAVE WHAT'S CALLED THIS
DRIVE, DURABILITY, REHAB
INTERVENTIONS.
I HEARD TALKING TODAY ABOUT THE
IDEA WE HAVE INTERVENTIONS BUT
WHO IS DOING THEM, FOR HOW LONG,
IS THE EFFECT -- HOW LONG DOES
THAT LAST AND HOW LONG DO PEOPLE
STAY WITH IT.
WE'RE TRYING TO -- WE'RE GETTING
THE FIELD INTERESTED IN LOOKING
AT ESTABLISHED INTERVENTIONS
WITHIN APPROPRIATE ADJUNCT
APPROACH TO SEE ABOUT ADHERENCE,
LONG-TERM BENEFITS.
THIS RFA ALLOWS FOR A LONGER
AMOUNT OF TIME, FIVE OR SIX YEAR
PERIOD, HIGHER AMOUNT OF MONEY
BECAUSE YOU NEED TO DO SOME
LONG-TERM FOLLOW-UP.
WITHIN THE PARENT RFA WE'RE
LOOKING, THIS HAS COME UP OVER
AND OVER, HEALTH DISPARITIES,
BIG ISSUE, BIG AREA.
WE'RE VERY COMMITTED TO THAT.
THIS IS UNDERSTANDING SEVERITY,
DURATION, PROSTHETIC, OTHER
TECHNOLOGY NEEDS OF WOMEN
VETERANS.
SUICIDE PREVENTION ABOUT
PARTICIPATION IN LIFE CONTROLS,
IMPACT OF COVID-19, A LONG HAUL
CONTEXT, EXPOSURE TO OPIOIDS
LONG-TERM OUTCOMES FROM TBI,
ALSO AT TECHNOLOGY-BASED
INTERVENTION SO STIMULATION,
THINGS LIKE THAT, CHRONIC PAIN
CONDITIONS, LOOKING AT COMBINING
DATA-DRIVEN APPROACHES, COMMON
DATA ELEMENTS, CDEs TO LOOK AT
MEASURE, IMPROVE, VALIDATE
INTERVENTIONS FOR TBI, EFFECTS
OF BLAST, NOISE, MULTI-SENSORY
CHRONIC CONDITIONS AND WE'VE
ADDED MORE RECENTLY THESE
TRANSLATIONAL REHAB RESEARCH
AWARDS, TRRA 1 AND 2s, ONE IS
PLANNING, 2 IS TESTING, TO HELP
MOVE WORK ALONG THAT REQUIRES
FDA INVOLVEMENT AND SO IT'S TO
PROVIDE SOME ASSISTANCE THERE
WHEN WE HAVE INVESTIGATORS WHO
ARE AT THAT STAGE WITH THE WORK
THAT THEY ARE DOING.
OKAY.
SO, WE AS I SAID, THIS IS
INTRAMURAL PROGRAMS, SO HOW DOES
THIS WORK WITH ELIGIBILITY AND
ALL THAT?
YOU HEAR ABOUT THIS SYSTEM, THE
INVESTIGATOR, P.I., CO-P.I.,
SALARY DEPLOYMENT WHEN FUNDED,
PEOPLE WITH COME IN ON
PROMISSORY, IF FUNDED I'LL TAKE
THE V.A. APPOINTMENT AND WE HAVE
THE LETTER FROM THE MEDICAL
CENTER IN THERE.
AND IT'S IMPORTANT THAT YOU CAN
CONNECT, WE WANT TO CONNECT YOU
WITH PROGRAM MANAGERS,
COLLEAGUES.
EVERYTHING IS THE RESEARCH
OFFICE AT THE FACILITY, WHERE IT
HAPPENS, WHERE EVERYTHING GETS
SUBMITTED, AND THAT'S WHERE THE
FRONTLINE OF OVERSIGHT ACTUALLY
HAPPENS.
U.S. CITIZEN ELIGIBILITY,
GETTING HIRED INTO THE V.A.,
THAT'S FEDERAL EMPLOYMENT.
SO THERE YOU GO.
AND RFAs, YOU CAN'T LOOK FOR
THEM.
THEY ARE ON THE INTRANET BECAUSE
IT'S AN INTRAMURAL PROGRAM, WE
NEED TO GET YOU CONNECTED SO YOU
CAN SEE WHAT'S GOING ON THERE.
LIKE I SAID EVERYTHING COMES
THROUGH THE RESEARCH OFFICE.
THAT'S WHY WE NEED TO GET YOU
CONNECTED.
PEOPLE IN THAT SLIDE BEFORE,
THEY ARE HAPPY TO HEAR FROM YOU
AND HAPPY TO HELP YOU OUT.
AND IT'S A MATTER OF JUST
DETERMINING WHAT'S THE AWARD
MECHANISM WHICH I'LL TELL YOU
ABOUT IS BEST FOR THE
RESEARCHERS, FOR THE WORK THEY
ARE DOING AND THE STAGE THEY ARE
AT.
AGAIN, IT HAS TO BE VETERAN
RELEVANT CONDUCTED IN V.A. SPACE
AND WE EVALUATE FOR THE VETERAN
RELEVANCE.
BY THE WAY, THE PICTURES ARE
SANCTIONED.
THEY ALL SHOW UP ALL OVER THE
PLACE.
SO THEY ARE ALL GOOD TO GO.
ALL RIGHT.
THE AWARDS THAT WE HAVE, I'M
CALLING THEM AWARDS BECAUSE OUR
APPROPRIATION IS NOT FOR
GRANTING.
WE DON'T HAVE GRANTING
AUTHORITY.
PEOPLE CALL THEM GRANTS, I KNOW
WHAT YOU MEAN, BUT OKAY.
WE HAVE CAREER DEVELOPMENT
PROGRAM, CDAs, TWO LEVELS
WITHIN TWO YEARS OF TRAINING AND
FIVE YEARS OF TRAINING.
YES, AN INDIVIDUAL CAN IN FACT
BE INVOLVED IN POTENTIALLY SEVEN
YEARS OF TRAINING THROUGH CDA 1
AND CDA 2.
YOU CAN COME IN AT 2
FOR MINORITY-SERVING
INSTITUTIONS SAME PARAMETERS AT
CDA2, TO ENCOURAGE AND HAVE
UNDERREPRESENTED INDIVIDUALS GET
ON BOARD AND BE PART OF THE
PROGRAM.
THE SMALL PROJECTS, THIS IS
GREAT, ONE TO TWO YEARS, THE
SPIRE.
YOU DON'T HAVE TO HAVE A SCRAP
OF DATA.
THE POINT IS YOU NEED DATA, COME
ON IN, LOOK FOR FEASIBILITY,
COME ON IN, BECAUSE THE IDEA IF
SUCCESSFUL, DEPENDING ON WHAT
YOU LEARN, YOU GO FORWARD AND
SUBMIT A MERIT AWARD AND DO A
LARGER PROJECT.
THOSE SPIREs ARE SET UP SUCH
THAT PREFERENCE IS FOR EARLY
CAREER.
SO WE ALWAYS LOOK AT THE STATUS
AND ROBUSTNESS OF THE EARLY
CAREER AWARDS AND THOSE PEOPLE
GET FUNDED AND GET IN LINE IN
FRONT OF THE FOLKS WHO ARE
ESTABLISHED.
THAT'S HOW IT WORKS.
THE MERIT, THAT'S LIKE THE R01,
BREAD AND BUTTER AWARD, FOUR
YEARS, FULL STUDIES.
WE HAVE RESEARCH CAREER
SCIENTISTS.
THIS IS REALLY A SALARY AWARD,
IT GOES TO INDIVIDUALS WHO HAVE
AND SUSTAIN AND CONTINUE TO
REALLY HIT ALL THE MARKS ON
RESEARCH AND MENTORSHIP AND
SERVICE.
AND ALL OF THAT.
WE HAVE RESEARCH ENHANCEMENT
AWARD PROGRAMS AND CENTERS,
THOSE ARE COLLECTIVES OF
RESEARCHERS UNDER A PARTICULAR
MISSION TO MEET PARTICULAR GOALS
WITHIN FIVE-YEAR CYCLES.
I'LL TELL YOU MORE ABOUT THOSE.
AND NOT MUCH ON SERVICE DIRECTED
BUT IT CAN HAPPEN.
SO THE RFAs ARE ON THE
INTRANET.
YOU NEED TO PONY UP OR COME GET
UP WITH THE V.A. PERSON TO SEE
THOSE.
YOU CAN SEE THE STUDIES IN
REPORTER, SEARCH BY AGENCIES AS
WELL AS clinicaltrials.gov SO
YOU CAN SEE EVERYTHING THERE.
ALL RIGHT.
SO, WHAT DOES THIS LOOK LIKE FY
23 THE AWARD PROGRAM YOU'LL SEE
571 ACTIVE AWARDS, THAT WAS WITH
ABOUT $112 MILLION IN DIRECT
DOLLARS APPORTIONED OVER TO R&D
TO CONDUCT ITS BUSINESS.
YOU'LL SEE THE MAJORITY OF THE
AWARDS ARE SITTING IN CHRONIC
MEDICAL CONDITIONS AND AGING, AS
WELL AS BRAIN HEALTH AND INJURY,
TBI AND STROKE, AND BEHAVIOR
HEALTH AND SOCIAL REINTEGRATION.
MOST VETERANS ARE OLDER, IN
THEIR 70s, THE BOLUS OF THE
VETERANS WE SERVE RIGHT NOW.
TBI IS THE SIGNATURE INJURY FROM
THE CONFLICTS, AND THERE'S ALSO
STROKE IN THAT PROGRAM.
AND THE BEHAVIORAL HEALTH, THE
MAJORITY OF THE WORK IN THERE IS
PTSD WHICH ALSO HAS TIES TO
CURRENT CONFLICT SO THOSE
NUMBERS ARE NOT SO SURPRISING TO
ME THAT THE PROGRAM IS ROUNDED
OUT CURRENTLY THAT WAY.
AND THE OTHER THING JUST, AGAIN,
THE BEST FIT INTO THE PROGRAM,
BUT TO POINT OUT WHEN THE WORK
YOU HEARD HERE THAT AS AGENCIES
WE COLLABORATE, WE WORK
TOGETHER, WE KNOW THAT MAKING
THE DISCOVERIES IN DIFFERENT
AREAS, DIFFERENT TECHNOLOGIES,
THAT IT TAKES A LOT OF MONEY AND
EFFORT SO OUR INVESTIGATORS WILL
AT TIMES BE FUNDED BY NIH,
DoD, AS IT MAKES SENSE TO
ADVANCE THE SCIENCE ALONG.
AND I SHOULD SAY MOST OF OUR
INVESTIGATORS ALSO ARE DUAL
APPOINTEES SO THEY HAVE AN
APPOINTMENT AT THE V.A. AND THEY
HAVE AN ACADEMIC AFFILIATE
APPOINTMENT.
AND THAT'S A USUAL, NOT UNUSUAL,
SITUATION.
AND THEN LOOKING BY AWARD TYPE,
THE MERIT LIKE YOUR R01 THE
BREAD AND BUTTER AWARD, THAT'S
THE AWARD WHEN WE TALK TO
INVESTIGATORS AND THE FIELD
THAT'S THE ONE THEY WANT
MAINTAINED AT THE HIGHEST LEVEL
POSSIBLE.
THEN WE HAVE THE SMALL PROJECTS,
SPIREs, THIS PAST FISCAL YEAR,
139 INTENDED TO BECOME MERIT
APPLICATIONS, CDA1 AND CDA2,
THAT'S ABOUT 19, 20%, ONE-FIFTH
OF OUR AWARDS GOING TO CAREER
DEVELOPMENT, BECAUSE OF THE
PREFERENCE TO EARLY CAREER
FOLKS, AND THEN CAREER
SCIENTISTS, THAT'S A SMALLER
PROGRAM, AND THEN THE CENTERS,
THERE'S 14 OF THOSE.
AND THIS IS A MAP YOU CAN SEE
WITH THE PURPLE SHADED STATES.
WE HAVE RESEARCH IN OVER 60 V.A.
MCs, REHAB RESEARCH WHERE THEY
ARE SORTED OUT ACROSS THE
COUNTRY.
WE HAVE THESE CENTERS, WHICH
I'LL WALK THROUGH.
IN L.A. WE HAVE A CENTER
ADDRESSING -- UNHOUSED, THE
TERMINOLOGY KEEPS CHANGING,
ENHANCEMENT OF COMMUNITY
INTEGRATION FOR HOMELESS
EXPERIENCED VETERANS, IN L.A.
THERE'S A HUGE HOMELESS
POPULATION, AND MANY OF THEM ARE
VETERANS.
PORTLAND IS NATIONAL CENTER FOR
REHABILITATIVE RESEARCH, SEATTLE
LIMB LOSS AND MOBILITY, LOWER
LIMB.
IOWA, THIS IS VISION, PREVENTION
AND TREATMENT OF VISUAL LOSS.
MINNEAPOLIS IS LOOKING AT
ENGINEERING CENTER TO OPTIMIZE
VETERAN ENGAGEMENT
REINTEGRATION.
THERE ARE TWO IN CLEVELAND,
ADVANCED PLATFORM TECHNOLOGY, I
SAW THAT MENTIONED TODAY, AND
FUNCTIONAL ELECTRICAL
STIMULATION, PITTSBURGH IS
WHEELCHAIRS, ASSISTIVE ROBOTIC
ENGINEERING.
BOSTON IS TRACTS, FOR TBI AND
STRESS DISORDERS.
PROVIDENCE IS NEUROLET'S AND
NEUROTECHNOLOGY.
AND WEST HAVEN RESTORATION OF
NERVOUS SYSTEM FUNCTION WHERE
THERE'S NON-OPIOID PAIN RESEARCH
TO ADDRESS CHRONIC PAIN
CONDITIONS.
THAT'S PART OF WHAT THEY DO.
PHILADELPHIA IS LOOKING AT
CARTILAGE REGENERATION,
TECHNOLOGY TO ENABLE MOTION.
GEORGIA IS VISUAL AND
NEUROCOGNITIVE, BRAIN RESEARCH
IN FLORIDA, OUR 14 CENTERS.
EACH MISSION IS UNIQUE.
THE FOCUS AREAS ARE UNIQUE, AND
THE GOALS ARE UNIQUE.
ALL RIGHT.
AND NOW THIS IS, AS I SAID, OVER
TIME THERE'S HUNDREDS OF AWARDS
SO I PICKED SOME THINGS HERE TO
JUST MENTION AND TELL YOU ABOUT.
I DO WANT TO MENTION ONE THING
PARTICULARLY WITH THE TBI
RESEARCH BECAUSE WE DO -- WE'RE
INVOLVED WITH THE NIDILRR, WITH
TBI MODEL SYSTEMS, WITH DATA AND
WORK THERE, ALSO WITH THE SPINAL
CORD INJURY SCI SYSTEMS, WITH
FITBIR, AND WORK IN THAT SYSTEM
TOO.
THERE'S A LOT OF CONNECTION AND
INTEGRATION AND THERE'S A V.A.
DoD CHRONIC EFFECTS OF
NEUROTRAUMA, UNDERSTANDING THE
BLAST AND THOSE KINDS OF EVENTS,
WHAT'S HAPPENING WITH SERVICE
MEMBERS AND VETERANS, THAT'S IN
ITS SECOND CYCLE SO IT'S BEEN
GOING FOR EIGHT, NINE YEARS OR
SO.
AND THAT'S A COLLABORATIVE
EFFORT SO THERE'S LOTS OF
COLLABORATIVE EFFORTS, SPMs
INTERACT WITH THEIR COLLEAGUES
AT NIH AND DoD AND NIDILRR,
AND THERE'S A COMMUNITY THERE
AMONGST THE PROGRAM PEOPLE, AND
THE FOLKS WHO ARE ALSO IN DEPUTY
DIRECTOR, DIRECTOR POSITIONS
LIKE THAT SO WE HAVE HIGH
INTERACTION WITH EACH OTHER.
SO, SOME HIGHLIGHTS HERE,
THIS -- ADDRESSING PROSTHETIC
KNEES OF WOMEN VETERANS WAS A
PARTICULAR VETERAN AND
CONGRESSIONAL INTEREST.
AND WHAT'S COME OUT OF THAT IS
THIS 3D ANKLE FOOT SYSTEM,
INTERCHANGEABLE FEET, COMMERCIAL
PARTNER, UNYK IS THE PARTNER,
WOMEN'S VETERANS WANTING TO WEAR
REALLY VARIABLE HEELS, HIGH
HEELS, SANDALS, ALL OF THAT.
OBVIOUSLY MEN WILL BENEFIT TOO
BUT THE DRIVER WAS THE WOMEN
VETERANS AND THE LEAD THERE IS
ANDREW HANSEN, MINNEAPOLIS.
THERE'S ALSO THESE 3D-PRINTED
COSMETICALLY INTERESTING
DESIGNED FEET WITH DESIGNS,
DIFFERENT COLORS, ALSO THAT'S
COMING OUT OF MINNEAPOLIS AND I
WILL POINT OUT IT WAS MENTIONED
BY THERESA THIS MORNING WITH THE
TWO DISCOVERIES PART OF THE
WHITE HOUSE DEMO DAY.
THERE'S THE DIGITS, FINGERS, TO
GET THEM RIGHT SIZED FOR WOMEN.
AND SO RICH WEIR LED THAT.
THESE ARE 3D-PRINTED FINGERS,
APPROPRIATELY SIZED, IT'S
UNPOWERED RATCHETING, IT'S
SIMPLE, DURABLE.
AND THE COMMERCIAL PARTNER THERE
IS POINT DIGIT WHERE THEY CAN BE
PURCHASED FROM.
AND I DO HAVE TO MENTION THIS
ADVANCED PROSTHETIC ARM, THE
LUKE ARM, A PARTNERSHIP WHERE
WE, VA, ARE INDEED IN CLINICAL
PARTNERSHIP WITH DARPA WHEN THEY
LAUNCHED THE REVOLUTIONIZING
PROSTHETICS FOR UPPER
EXTREMITIES PROSTHETICS.
WE WERE THERE AT THE BEGINNING
AND WHEN IT WAS READY TO GO INTO
CLINICAL TRIALS, THEN WE STEPPED
IN, THE PARTNERSHIP REALLY
FLOURISHED FROM THERE.
THAT ARM HAS NATURALISTIC
MOVEMENT, WHAT NO OTHER ARM HAS,
A FULLY ARTICULATED SHOULDER.
LINDA REZNICK WAS THE LEAD.
DISCOVERY AND DELIVERY TO
VETERANS, PROGRESSIVE TINNITUS
MANAGEMENT, A HUGE PROBLEMS
AMONGST VETERANS.
THIS PROM WAS DEVELOPED, TESTED,
IT'S BEEN TRANSLATED INTO THE
V.A. SYSTEM, IT'S IN DoD, IT'S
USED NATIONALLY, ALSO AVAILABLE
IN TELEHEALTH FORMAT.
WE'VE GOT A LINK OF PEOPLE WHO
WANT TO AVAIL THEMSELVES OF IT.
AND I'M MENTIONING TELEHEALTH.
V.A. HAS BEEN INVOLVED IN
TELEHEALTH, REMOTE DELIVERY OF
CARE NOT JUST FOR THIS BUT FOR
MANY, MANY THINGS.
IT'S BEEN GOING ON WELL BEFORE
COVID, THAT V.A. HAS BEEN
WORKING IN THAT SPACE.
THINKING IN VISION, SO DETECTING
AND TREATING EARLY STAGE VISUAL
PROBLEMS, TO AVOID LATE STAGE
BLINDNESS DUE TO DIABETES, SOME
EARLIER LEVEL WORK, THAT'S GOING
ON.
AND SO THE POINT THERE IS THEY
TESTED EFFICACY OF NEURAL
PROTECTIVE THERAPY, SO LEVODOPA,
POSITIVE RESULTS, A PATENT
FILED, LOOKING TO SEE THE
DEVELOPMENT OF PROTOTYPE
OCCURRENCE SO THAT COULD BE A
GOOD INTERVENTION, GETS OVER TO
HUMANS, MARSHAL PARDUE IS
LEADING THAT IN ATLANTA.
THIS IS THE AUDITORY SPACE,
TOXICITY MONITORING PROGRAM, AND
THAT'S TO ADDRESS THE SIDE
EFFECTS FROM OTOTOXIC TREATMENT,
IT CAN IMPAIR QUALITY OF LIFE,
IT'S A MATTER OF BEING CONNECTED
WITH CLINICIANS AND ONCOLOGY
FOLKS TO RAISE AWARENESS ALL THE
WAY AROUND, DO THE MONITORING,
ADJUSTMENTS MADE WITH TREATMENT
SO THAT HEARING CAN BE PRESERVED
SO THAT'S THE INTENT BEHIND IT.
ALSO THIS INTERNATIONAL
OTOTOXICITY MANAGEMENT GUIDELINE
WORKING GROUP, WHICH IS
SPEARHEADED BY DR. MARTIN AT
PORTLAND, SHE'S THE LEAD BEHIND
THE TWO THINGS AND THIS HAS A
GLOBAL CONSORTIUM GOING ON WITH
UNIVERSITIES AND HEALTH
FOUNDATIONS, EVERYBODY WHO IS
INTERESTED IN THIS SPACE
REGARDING OTOTOXICITY
MANAGEMENT.
AND THEY ARE HEALTH CARE GAPS,
INDIVIDUALS WITH TINNITUS,
FOLLOWING EXPOSURE, PRETTY
EXCITING.
AND THEN WE'VE HAD SOME ACTIVITY
WITH THE ASSESSING OF INJURY, I
PUT THE DEFINITION IN THERE.
DIFFICULTIES THAT PEOPLE FACE
AFTER DOING HIGH STAKES THINGS
THAT VIOLATE WHAT IS RIGHT AND
JUST OR AFTER BEING FORCED TO
EXPERIENCE OTHERS' IMMORAL
ACTIONS.
SO THAT'S THE STANDARD
DEFINITION IN THE WAY THE TERM
IS USED.
SO THE LEAD IS IN BOSTON, HE
DEVELOPED A MORAL INJURY OUTCOME
SCALE TO ASSESS MORAL INJURY IN
VETERANS.
THERE'S THE WEBSITE.
THEY HAVE THIS WEBSITE GOING.
BECAUSE THIS IS SUCH A NEW AREA,
SO MUCH TO LEARN AND UNDERSTAND
ABOUT IT, AGAIN, THE COMMUNITY
OF PEOPLE WHO WILL BE
INTERESTED, VETERANS, FAMILIES,
NOT VETERANS, CLERGY, CHAPLAINS,
TO GO AND LEARN AND INTERACT AND
SO THAT'S REALLY A GREAT
RESOURCE.
DEPRESSION TREATMENT, THIS IS
LOW INTENSITY FOCUSED
ULTRASOUND, A NEW TYPE,
NON-INVASIVE BRAIN STIMULATION,
MIGHT BE ABLE TO GET AT DEEP
STRUCTURES OF THE BRAIN INVOLVED
WITH DEPRESSION, ANXIETY.
ALSO LOOKING AT THE FEASIBILITY
OF SIMULTANEOUS fMRI WITH THE
FOCUSED ULTRASOUND, DOING
FIRST-IN-HUMAN STUDY, SAFETY,
FEASIBILITY, COULD LEAD TO
INNOVATIVE TREATMENTS.
DR. PHILIP AT PROVIDENCE V.A.
AND GROUP EFFORTS, ENABLING
SENSATION TO TOUCH, PROSTHETIC
LIMBS.
THESE ARE NEURAL PROSTHETIC
SYSTEMS IMPLANTED TO IMPROVE
HAND FUNCTION, THIS IS ABOUT
PROVIDING EMBODIMENT SO NATURAL
FEEL, NATURAL PERCEPTIONS, ALSO
BEING DEVELOPED FOR THE FOOT.
AND THIS INITIAL DEVELOPMENT
THEY ARE DOING FIRST-IN-HUMAN
TRIALS, COMPONENT DEVELOPMENT,
IT'S OCCURRING ON THE HEELS OR
FOLLOWING THE DARPA HAPTIX
RESEARCH PROGRAM.
THEY PUT THE LARGE MONEY INTO IT
TO GET THE TECHNOLOGY DEVELOPED
UP TO THE POINT TO START TO DO
THESE INITIAL TRIALS.
AND THE SENSOR IN THE PROSTHETIC
HAND -- SENSORS ACTIVATE THE
IMPLANTED NERVE CUFF ELECTRODE
AND YOU GET POINT INTERPRETING
THE SIGNAL AT TOUCH SEVEN --
SENSATION IN THE MISSING LIMB,
UPPER LIMB, DR. TYLER, AND RON
TRIOLO WITH RESPECT TO THE FOOT.
AND THIS IS A SPACE WHERE THERE
HAVE BEEN MANY FUNDERS, IT'S
EXPENSIVE RESEARCH, AND THEY
WILL GET THERE.
THEY ARE REFINING IT.
THE AMPREDICT, THE CLINICAL
DECISION MAKING TOOL FOR THE
PATIENT, FOR THE PROVIDER, AND
IT'S A REALLY GREAT ONLINE TOOL,
AND IT'S REALLY TO LOOK AT WHEN
THERE'S A KNOWN SCHEDULED LOWER
LIMB AMPUTATION, THAT'S GOING TO
HAPPEN, THAT'S THE MAIN REASON
FOR LIMB LOSS AND FOR LIMB LOSS
IN V.A.
THERE'S THE UNFORTUNATE
TRAUMATIC BUT BY AND LARGE IT'S
SCHEDULED AMPUTATIONS USING 21
PREDICTORS, CALCULATING IN A
PATIENT-SPECIFIC WAY THE
SPECIFIC MOBILITY, RISK OF
MORTALITY, RISK TO HAVE TO DO
REAMPUTATION WHEN THEY DECIDE ON
WHAT LEVEL TO DO THE AMPUTATION.
BUT THIS IS WHERE IT'S ENABLING
THE VETERAN AND PHYSICIAN TO
WORK TOGETHER, SO THAT THEY
UNDERSTAND WHAT'S GOING ON AND
YOU UNDERSTAND RISKS, BENEFITS,
AND THE ULTIMATE LEVEL OF
AMPUTATION, AS WELL AS GETTING
THE PATIENTS, VETERANS' GOALS
AND DESIRES LINED UP SO IT CAN
BE AS --
[ NO AUDIO ]
>> CHECK, CHECK.
CHECK, CHECK.
>> HEARD.
>> OKAY.
ALL RIGHT.
THAT WOULD NOT BE NICE.
OKAY.
SO, THIS AMPREDICT THE BETA
VERSION WAS FORMALLY TESTED HERE
IN THE U.S. AS WELL AS OUTSIDE
OF THE U.S. AND THEN YOU CAN GO
ONLINE TO ACTUALLY SEE IT NOW
AND CAN USE IT.
THERE'S A DISCLAIMER AT THE
FRONT END, YOU READ IT, YOU
UNDERSTAND THE LIMITATIONS AND
THE LIABILITIES AND ALL OF THAT.
SO THAT EXISTS.
AND YOU SAW THIS THIS MORNING.
THIS IS ADVANCEMENTS IN
WHEELCHAIR MOBILITY.
SO THIS IS DR. COOPER AND HIS
TEAM AT PITTSBURGH, THERE'S THAT
WHEELCHAIR, THE FOLDABLE
LIGHTWEIGHT WHEELCHAIR, BUT
THAT'S A THING THAT HAS HAPPENED
WITH DR. COOPER AND HIS TEAM.
THEY HAVE ERGONOMIC, LIGHTER
WEIGHT, THE CUSHION DESIGN,
TRANSFERS TO BED, CHAIR,
COMMODE, PRESERVING SHOULDER
ROTATOR CUFF BUT ALSO WITH
CAREGIVERS, NURSES AIDES WITH
TRANSFERRING INDIVIDUALS OUT OF
WHEELCHAIRS.
AND THEN THERE'S FEEDING AND
POSITIONING GUIDELINES AND ALL
OF THAT.
THAT'S COME OUT OF THIS GROUP.
THEY WORK WITH ASSISTIVE
TECHNOLOGY STANDARDS.
THESE THINGS GET TO MARKET AND
BECOME AVAILABLE.
AND THE OTHER THING TO MENTION
HERE, THIS IS ABOUT -- IT'S
SPINAL CORD INJURY IN THE
CONTEXT OF VOCATIONAL
INTEGRATION PROGRAM.
THEY USE PREDICTIVE OUTCOME
MODEL OVER TIME FOR EMPLOYMENT
TO SEE DOES THIS SCI PROMOTE --
DOES IT WORK BECAUSE RETURN TO
WORK RATES FOLLOWING SPINAL CORD
INJURY PARTICULARLY IN VETERAN
POPULATION ARE HORRIBLE, SINGLE
DIGIT, THAT BAD.
SO THE PROGRAM SHOWED
IMPROVEMENTS WITH EMPLOYMENT
STATUS, PRODUCTIVITY,
WELL-BEING, QUALITY OF LIFE, AND
SO WHAT'S HAPPENED NOW ON
IMPACTS, SOME V.A. DIRECTIVES
HAVE BEEN UPDATED TO ADD A VOC
REHAB SPECIALIST, AND TO EXPAND
SUPPORTED EMPLOYMENT.
NOW THEY ARE LOOKING AT VETERANS
WITH MENTAL HEALTH, DISABILITY,
SPINAL CORD INJURY, TBI, PTSD, A
TOOLKIT NOW IN PLACE BEING USED
IN RESEARCH, BEING USED IN
TRAINING V.A.-WIDE.
THIS IS THE LEAD AS LISA
OTTOMANELLI OUT OF TAMPA,
SOMETHING MANY OF US ARE
FUNDING.
IT'S IMPORTANT.
IT'S A LONG HAUL RESEARCH WITH
BRAIN-COMPUTER INTERFACE WORKING
WITH A GROUP WITH A TEAM AT
PROVIDENCE USING THE BRAIN GATE
SYSTEM.
AND TWO WAYS FOR COMMUNICATION,
IF INDIVIDUALS HAVE PARALYSIS OR
LOSS OF SPEECH TO GET
COMMUNICATION BACK TO ENABLE
ASSISTIVE DEVICES, AND FOR
MOBILITY THE BIG THING TO GET
BACK IS ARM AND GRASP BECAUSE
THAT'S WHERE YOU GET A -- A
PERSON WOULD GET A LOT OF
FUNCTION BACK.
THEY ARE USING THE BRAIN GATE TO
HARNESS THAT BRAIN ACTIVITY SO
THAT ASSISTIVE ROBOTIC DEVICES,
ADVANCED PROSTHETIC ARMS CAN BE
MANIPULATED THROUGH THE USE OF
THAT SYSTEM.
AND IN BOSTON, LED BY
McGLINCHY AND MILBERG, SADLY
DR. McGLINCHY HAS PASSED BUT
WAS INVOLVED.
THERE WAS A NEED FOR GOLD
STANDARD SPECIFICALLY FOR POST
9/11 VETERANS AND THEY VALIDATED
THIS THROUGH THE TRACT CENTER,
THAT VALIDATION STUDY CAME OUT
IN 2014, SEMI STRUCTURED
INTERVIEW, IT'S BEING USED, IT'S
AVAILABLE OUT THERE, FREE TO THE
PUBLIC, BEING USED REALLY
NATIONALLY, INTERNATIONALLY,
LOCALLY, SO IT'S A RESOURCE AND
A TOOL.
AND THE LAST BATCH OF SLIDES ARE
WAYS TO GO ONLINE, LOOK THINGS
UP, HOW TO CONNECT, MORE
RESOURCE TYPE SLIDES.
AND THIS IS WHAT IT'S ALL ABOUT,
THE VETERAN.
SO I HOPE WITH THIS TOUR THAT
PEOPLE HAVE BETTER IDEA OF WHAT
WE DO, IN V.A., FOR VETERANS.
I REALLY APPRECIATE THIS
OPPORTUNITY TO TELL YOU ABOUT
US.
>> THANK YOU, TRISH.
WE'LL TAKE JUST A COUPLE
QUESTIONS.
>> HOW MANY -- WHAT PEOPLE
OVERLAP IN NIH-FUNDED RESEARCH
(INAUDIBLE).
>> YEAH, WELL, THE POINT IS THAT
THE INVESTIGATOR WITH WHATEVER
THE IDEA AND THE SCIENCE IS,
THEY GO TO THE RIGHT FUNDER
BASED ON HOW -- THE WAY APPROACH
RIGS CAN BE SPENT AND PURPOSE.
IF THEY WANT TO DO VETERAN
CENTRIC RESEARCH IN THE V.A.
WITH VETERANS, AND THEY ARE ALL
FORWARD FACING FOR US ON
FUNCTIONAL OUTCOMES AND
TRANSLATING, THEN WE'RE THE
PLACE TO GO TO.
IF THEY ARE INTERESTED -- ALSO I
NEED TO MENTION CHRONIC, WITH
CHRONIC STATE OF CONDITIONS, NOT
ACUTE.
SO IF THEY ARE INTERESTED IN
ACUTE FOUNDATIONAL MECHANISTIC
AND NOT FORWARD THINKING AT THAT
POINT, THE FUNCTIONAL, WE'RE NOT
THE PLACE TO COME TO, DOES
THAT -- IT'S REALLY BEST USE OF
FEDERAL DOLLARS ALL THE WAY
AROUND TO GO TO THE RIGHT FUNDER
FOR THE WORK YOU WANT TO DO AT
THAT TIME.
AND WE DO LOOK.
WE MAKE SURE, WE CHECK OUR
PROGRAM MANAGERS CHECK ABOUT
DUPLICATION, NO DUPLICATION, YOU
CAN'T HAVE THAT.
SO WE ADJUDICATE AND GET THAT
ALL STRAIGHTENED OUT.
>> I WANT TO UNDERSCORE TWO
THINGS TRISH SAID.
FOR THOSE THAT ARE INTERESTED,
YOU CAN JOIN THE V.A. CENTER, IF
THERE'S ONE IN YOUR AREA, IF YOU
GET A GRANT.
IT CAN BE NEGOTIATED.
THE SECOND THING ALL THE V.A.
RESEARCH IS ALSO INCLUDED IN THE
NIH REPORTER, SO IF YOU GO THERE
AND WANT TO SEE THE SCOPE OF
WHAT THEY ARE DOING, HOW IT
COMPLEMENTS US, YOU CAN LOOK UP
THERE.
ONE MINOR FRUSTRATION WE HAVEI
ANYBODY WITH A V.A. GRANT IS BY
DEFINITION A GOVERNMENT EMPLOYEE
AND CANNOT SERVE ON OUR ADVISORY
BOARD.
THERE'S GREAT PEOPLE BUT WHEN
THEY HAVE A V.A. GRANT WE CAN'T
HAVE THEM WORK WITH US FOR WHAT
YOU FOLKS ARE DOING.
SO, LET'S TRANSITION TO THE --
OKAY.
THE FINAL SESSION WE HAVE TODAY
IS UPDATE, NIH RESPONSE TO THE
ACD WORKING GROUP ON PEOPLE WITH
DISABILITIES.
I HAVE THE HONOR OF INTRODUCING
ALISON CERNICH, DEPUTY DIRECTOR
OF NICHD, OUR FORMER
INSPIRATIONAL DIRECTOR OF THE
CENTER, SHE'S A BOARD CERTIFIED
NEUROPSYCHOLOGIST BY TRAINING,
AND SHE'S GOING TO PROVIDE US
WITH UPDATES.
>> I THINK THIS IS WORKING.
LET ME CHECK THAT.
OKAY.
A MINUTE TO SIT DOWN.
I KNOW HE'S GOT MY SLIDES.
THIS TEAM IS GREAT IN SUPPORTING
OUR MEETINGS.
SO THANK YOU.
SO I WANT TO THANK YOU FOR
WELCOMING ME.
I WISH I COULD HAVE BEEN HERE
ALL DAY TODAY BUT UNFORTUNATELY
THAT'S NOT QUITE HOW MY SCHEDULE
WORKS.
BUT WHERE I WILL BE TALKING
TODAY IS ABOUT WORK I'M
UNDERTAKING AT THE NIH LEVEL
WITH COLLEAGUES TO LOOK AT HOW
TO BETTER INCORPORATE THE
RECOMMENDATIONS BOTH FROM
ADVISORY COMMITTEE ON THE
DIRECTOR'S REPORT ON INCLUDING
INDIVIDUALS WITH DISABILITIES,
BUT ALSO NIH STRATEGIC PLAN ON
DYE DIVERSITY, EQUITY,
INCLUSION, AND ACCESSIBILITY.
SO, WE ARE -- I'M ONE OF THE
CO-CHAIRS OF THE SUBGROUP ON
INDIVIDUALS WITH DISABILITIES
UNDER OUR DIVERSITY STEERING
COMMITTEE AT THE NIH.
AND I'LL BE TALKING TO YOU ABOUT
HOW WE'RE GOING TO IMPLEMENT
THESE RECOMMENDATIONS.
SO NEXT SLIDE PLEASE.
SO, I THINK ALL OF YOU ARE
FAMILIAR WITH THIS BUT INCLUSION
OF PEOPLE WITH DISABILITIES IS
ESSENTIALLY A MAJOR FOCUS OF OUR
EFFORTS AROUND DISABILITY AND
ACCESSIBILITY AT NIH.
NEXT SLIDE PLEASE.
THIS IS A GREAT REPORT OUT OF
THE NATIONAL ACADEMY OF SCIENCE,
ENGINEERING AND MEDICINE, CAME
TO THE CONCLUSION WHILE WE ALL
BEAR THE COST OF EXCLUSION, IF
WE DON'T INVEST ESSENTIALLY THEY
SAID THE POPULATIONS NOT
INCLUDED BEAR THE GREATEST COST.
WE CANNOT TRANSLATE RESEARCH
FINDINGS TO FOLKS WHO MAY
BENEFIT THE MOST FROM ACCESS TO
NOVEL TREATMENTS.
AND WHAT WE KNOW IN LOOKING AT
OUR WORK IS THAT, YOU KNOW, WE
PRESCRIBE A LOT OF THINGS TO
PEOPLE OFF LABEL THAT HAVE NEVER
BEEN TESTED.
SO WE KNOW FOLKS WITH SPINAL
CORD INJURY, FOR EXAMPLE,
PROCESS MEDICATIONS AND
METABOLIZE MEDICATIONS
DIFFERENTLY.
IF WE DON'T STUDY THOSE
TREATMENTS IN PEOPLE WITH SPINAL
CORD INJURY THEN WE HAVE THE
POSSIBILITY OF LEADING TO
ADVERSE EVENTS.
SOMETIMES WE DON'T UNDERSTAND
THE EFFICACY OF THE TREATMENTS
IN THE POPULATIONS BUT WE
PRESCRIBE THEM BECAUSE THEY ARE
THE BEST AVAILABLE.
AND SO WE REALLY HAVE A NEED TO
PROTECT.
WE SAY THIS FOR PREGNANT AND
LACTATING WOMEN BUT IT APPLIES
HERE.
IF WE DON'T INCLUDE FOLKS IN
MEDICAL RESEARCH WE'RE NOT ABLE
TO PROTECT THEM THROUGH RESEARCH
WHILE WE TRY TO -- USUALLY
PEOPLE ARE TRYING TO PROTECT OR
EXCLUDES THEM FOR RESEARCH
INSTEAD OF USING RESEARCH TO
BETTER THEIR HEALTH AND
WELLNESS.
SO THIS LEADS TO LACK OF
INFORMATION WHEN FOLKS ARE
TRYING TO TREAT PEOPLE WITH
DISABILITIES.
SO, LESS THAN 7% OF OUR FUNDING
ADDRESSES DISABILITY THAT'S NOT
WITHIN THE CONTEXT OF DISEASE.
SO WE HAVE A LOT OF
DISEASE-BASED RESEARCH WITH VERY
LITTLE IN TERMS OF HEALTH AND
WELLNESS.
THERE'S REALLY NO DATA ON THE
ACTIVE INCLUSION OF PEOPLE WITH
DISABILITIES IN NIH-FUNDED
RESEARCH.
WE DO NOT COLLECT THIS DATA THE
WAY WE DO FOR, SAY, GENDER,
RACE, ETHNICITY.
AND WE DO HAVE MANDATES THAT SET
THE STANDARDS FOR DATA
COLLECTION AND PROHIBIT
DISCRIMINATION BASED ON
DISABILITY THAT GOVERN
ACTIVITIES INCLUDING
REHABILITATION ACT, AMERICANS
WITH DISABILITY ACT, AFFORDABLE
CARE ACT.
INCLUSION MATTERS.
WE HAVE TO SUPPORT RESEARCH THAT
IS REPRESENTATIVE OF THE U.S.
POPULATION.
WE KNOW HEALTH CARE COSTS FOR
PEOPLE WITH DISABILITIES ARE 4.8
TIMES HIGHER THAN WITHOUT
DISABILITY.
WE ALSO KNOW PUBLIC HEALTH
RESOURCES ARE TIED TO THE
EVIDENCE OF HEALTH NEEDS,
DISPARITIES, INEQUITIES.
AND REALLY WE HAVE TO DO A
LITTLE BIT MORE BECAUSE WE CAN'T
IMPROVE WHAT WE DO NOT MEASURE.
NEXT SLIDE PLEASE.
AND WHY ARE DISABLED PEOPLE
UNDERREPRESENTED IN RESEARCH
PARTICIPATION?
WELL, I THINK WE'VE HEARD QUITE
A BIT THIS YEAR ABOUT ABLEISM
AND THIS HAS BEEN AROUND FOR A
VERY LONG TIME.
AND THERE ARE MANY THINGS THAT
LEAD TO THIS BUT IT'S
ESSENTIALLY THE SAME AS OTHER
ISMS THAT LEAD TO
DISCRIMINATION, SOCIAL
PREJUDICE, WE SAW QUALITY OF
LIFE DURING THE PANDEMIC, WE
KNOW FROM RESEARCH THAT QUALITY
OF LIFE FOR PEOPLE WITH
DISABILITIES IS OFTEN HIGHER
THAN THOSE WITHOUT DISABILITY.
AND THEN THERE'S THIS SORT OF
NEED TO PROTECT AND THIS CAME UP
LAST WEEK IN A VERY HEATED
EXCHANGE IN AN FDA WORKSHOP.
SO, I THINK THAT IS SOME
PRESUMPTION THAT WE HAVE AROUND
PEOPLE WITH DISABILITY THAT
REFLECT ABLEISM.
THE OTHER IS MEDICAL MODEL.
THIS IS OFTEN PRESUMPTIVE MODEL,
I THINK PRESUMPTIVE MODEL HERE
AT THE NATIONAL INSTITUTES OF
HEALTH FOCUSING ON ILLNESS OF
DISEASE RATHER THAN FUNCTION.
THERE ARE MANY THINGS THAT
CONTRIBUTE INCLUDING THE
ENVIRONMENT IN WHICH THE PERSON
IS LIVING.
WE'VE ALL HEARD OF THE EXAMPLE
OF THE CURB CUT.
THE FACT IS YOU CAN'T BE MOBILE
IN YOUR ENVIRONMENT IF IT'S NOT
AN ENVIRONMENT THAT IS ADAPTED
TO YOUR NEEDS.
AND SO WE HAVE TO MOVE TO MORE
OF A SOCIAL ENVIRONMENTAL MODEL
RATHER THAN MEDICAL MODEL.
THE OTHER IS THE COST AND
COMPLEXITY.
THERE'S THAT ASSUMPTION THAT IF
YOU HAVE TO PROVIDE
ACCOMMODATIONS OR IF YOU HAVE TO
PROVIDE EXCEPTIONS TO INCLUDE
PEOPLE WITH DISABILITY THAT'S
GOING TO IMPACT FEASIBILITY OF
YOUR STUDY.
YOU'LL HAVE TO GET PROXY
CONSENT, MORE RESOURCES,
ACCOMMODATIONS YOU NEED TO
PROVIDE.
THESE ARE ASSUMPTION, NOT ALWAYS
REALITIES, AND THEY ARE THE SAME
IF YOU DO THE RESEARCH FOR
MEDICAL ILLNESS AS THEY ARE IF
YOU'RE DOING IT WITH RESPECT TO
HEALTH AND WELLNESS.
THERE'S ALSO THIS SORT OF DATA
ASSUMPTION THAT PEOPLE WITH
DISABILITY WOULD INTRODUCE
HETEROGENEOUS CHARACTERISTICS
THAT MAKE DATA MESSY.
I'VE SEEN ENOUGH MESSY DATA AS A
RESULT OF SERVING IN THIS
POSITION I SUGGEST MOST STUDIES
ARE MESSY FOR VARIOUS REASONS
AND THIS IS NOT A GREAT
ASSUMPTION TO HOLD.
NEXT SLIDE PLEASE.
THE OTHER THING WE HAVE TO DO A
BETTER JOB OF IS INCREASE
OPTIONS IN CAREER PATHS FOR
PEOPLE WITH DISABILITY IN
SCIENCE POSITIONS.
DISABILITY IS NOT THE ONLY THING
ABOUT A PERSON.
IT IS A PART OF A PERSON JUST
LIKE GENDER, RACE, JUST LIKE
ANYTHING ELSE DEFINES THEM, THE
FACT THEY LIKE DOGS INSTEAD OF
CATS, A SPECIAL PREFERENCE.
I FEEL SORRY FOR CAT PEOPLE
BECAUSE THEY HAVE MADE THE WRONG
CHOICE BUT I THINK THAT
GENERALLY WE DO NOT TAKE THIS
SERIOUSLY, RIGHT?
WE KNOW ABOUT 1.2% OF FUNDED
INVESTIGATORS AND 3% OF
DIVERSITY SUPPLEMENT RECIPIENTS
REPORTED DISABILITY IN OUR
SYSTEM, OFTEN NOT REPORTED.
FROM PERSPECTIVE WE GET THE DATA
AT ALL, THIS IS WHAT WE HAVE.
A LOT OF PEOPLE DO NOT REPORT
THIS BECAUSE OF THE STIGMA
RELATED AND/OR POTENTIAL FOR
THEM TO FEEL THEY ARE GOING TO
GET REPERCUSSIONS AT THEIR
ORGANIZATION.
AND SO WE HAVE TO RELY ON OTHER
SOURCES.
THERE WAS A PUBLICATION LAST
WEEK, RECENT SURVEY PUBLISHED
THAT DOCUMENTS THERE ARE LOWER
SALARY LEVELS FOR DOCTORATE
RECIPIENTS WITH DISABILITIES IN
SCIENCE, TECHNOLOGY, ENGINEERING
AND MATH THAN WOULD THE, AND
UNDERREPRESENTED AT HIGHER
FACULTY RANKS AT INSTITUTIONS.
SO, WE'RE NOT DOING A GREAT JOB
AS A FIELD, I THINK WE CAN DO
BETTER.
NEXT SLIDE PLEASE.
SO WHAT ARE WE DOING AT THE NIH?
NEXT SLIDE.
SO, THERE HAVE BEEN TWO
COMPLEMENTARY EFFORTS, RUNNING
IN PARALLEL, TO PROVIDE
STRATEGIC FRAMEWORK TO IMPROVE
DISABILITY INCLUSION.
MANY OF YOU MAY BE FAMILIAR WITH
ADVISORY COMMITTEE TO THE
DIRECTOR WORKING GROUP ON
DIVERSITY, THERE'S A SUBGROUP ON
INDIVIDUALS WITH DISABILITIES.
THEY PROVIDED A ROADMAP FOR
ABLEISM.
I NEED TO CORRECT THAT SLIDE.
IN DECEMBER OF 22 THEY ASKED TO
UPDATE THE MISSION STATEMENT,
ESTABLISH AN NIH DISABILITY
EQUITY AND ACCESS COORDINATING
COMMITTEE, DEVELOP NIH-WIDE
EFFORT TO IDENTIFY AND ADDRESS
STRUCTURAL ABLEISM AND PROMOTE
DISABILITY INCLUSION, ENSURE DES
BUILT INCLUSION, MAINTAIN
ACCOUNTABILITY FOR THESE
EFFORTS.
SIMULTANEOUSLY, THE NIH WAS
DEVELOPING A STRATEGIC PLAN FOR
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY.
AND THIS INCLUDES PROMOTION OF
INCLUSION AND ABILITY TO ADDRESS
ABLEISM IN TRAINING,
COMMUNICATION, POLICIES AND
STRUCTURES, TO ENSURE
ANTI-ABLEISM IS A CORE COMPONENT
OF OUR EFFORTS.
SO, THIS IS A FIVE-YEAR PLAN
JUST RECENTLY LAUNCHED IN MARCH
OF 2023.
AND SO THIS IS GOING TO BE AN
ALL OF NIH EFFORT, TRANSFORMING
WAIT OUR ORGANIZATION WORKS AND
ALSO TO THINK ABOUT THIS WITH
RESPECT TO NIH'S RESEARCH.
AND SO WE'RE GOING TO TALK ABOUT
HOW WE'RE GOING TO ADDRESS THIS
IN A MOMENT.
NEXT SLIDE PLEASE.
SO TO START WITH THE ACD REPORT
THERE WAS A SPECIFIC
RECOMMENDATION AROUND THE
MISSION STATEMENT.
SO WE ISSUED A REQUEST FOR
INFORMATION THIS PAST YEAR.
OUR CURRENT MISSION STATEMENT TO
SEEK KNOWLEDGE ABOUT THE NATURE
AND BEHAVIOR OF SYSTEMS AND
APPLICATION OF THAT KNOWLEDGE TO
ENHANCE HEALTH, LENGTHEN LIFE.
IF YOU'RE FAMILIAR WITH THE
REPORT, THE GROUP REFLECTED ON
THE FACT, AND THIS WAS ACTUALLY
REVISED NOT VERY LONG AGO, RIGHT
AROUND THE TIME WHEN I JOINED
NIH, NOT LONG AFTER THAT, IT
USED TO SAY ELIMINATE ILLNESS
AND DISABILITY, AND DISABILITY
COMMUNITY WITHIN THE NIH SAID
ELIMINATING DOESN'T FEEL GOOD
WHEN YOU SAY YOU'RE TRYING TO
ELIMINATE A PART OF WHO I AM.
AND THE ACD GROUP SAID THIS IS
STILL NOT OKAY.
YOU'RE STILL TRYING TO REDUCE
DISABILITY, TRYING TO REDUCE ME
OUT OF THE EQUATION.
FOR SOME FOLKS, MANY OF US KNOW
THIS WHO WORKED WITH THE
DISABILITY COMMUNITY, THERE ARE
DIFFERENT FEELINGS AND POSTURES
AROUND DISABILITY AS AN
IDENTITY, A CULTURE, VERSUS
DISABILITY AS SOMETHING THAT
SOMEBODY WOULD NOT LIKE TO HAVE.
OR THEY ARE A PERSON AND THE
DISABILITY IS PART OF THEM BUT
NOT ALL WHO HAVE THEY ARE.
WE SEE TENSION IN THE COMMUNITY.
EITHER WAY THIS ISN'T GOOD.
SO, THE PROPOSED REVISED MISSION
STATEMENT WAS PUT OUT FOR PUBLIC
COMMENT, THE NEW ONE INCLUDES
LANGUAGE THAT SAYS TO OPTIMIZE
HEALTH AND PREVENT OR REDUCE
ILLNESS FOR ALL PEOPLE.
IN THIS WAY I THINK WHAT WE WERE
TRYING TO GET TO WAS WE WANT TO
MAKE SURE EVERYBODY IS HEALTHY
AND WELL AND WE'RE GOING TO
PREVENT OR REDUCE ILLNESS FOR
PEOPLE.
SOME OF THIS MIMICS SOME CHANGES
THAT WE MADE TO NICHD'S MISSION
STATEMENT AND TO OUR VISION
STATEMENT.
SO, THIS CLOSED IN NOVEMBER.
AND THE ANALYSIS OF THE
RESPONSES IS ONGOING.
I BELIEVE THERE'S GOING TO BE A
REPORT OUT AT THE ADVISORY
COMMITTEE TO THE DIRECTOR
RELATIVELY SOON ON WHAT WE ARE
HEARING FROM THE COMMUNITY.
NEXT SLIDE PLEASE.
THE OTHER THING THAT HAS CHANGED
IN THE PAST YEAR IS THAT THERE
HAS BEEN AN OFFICIAL DESIGNATION
OF PEOPLE WITH DISABILITY AS A
HEALTH DISPARITY POPULATION SO
MANY OF YOU ARE FAMILIAR WITH
THE LITERATURE IN THIS AREA
DATING BACK TO SOME WORK ON
ESTABLISHING HEALTH DISPARITIES
FOR PEOPLE WITH DISABILITIES
LOOKING AT DATA FROM CDC, AND
LOOKING AT A LACK OF EQUITY WITH
RESPECT TO, SAY, PREVENTIVE
HEALTH PROVISION, UPTAKE OF
IMMUNIZATION, RATES OF OBESITY,
RATES OF SMOKING.
AND GENERALLY SEEING THAT FOLKS
WITH DISABILITY HAD DIFFERENTIAL
OUTCOMES AND EVEN IF THEY HAD
INSURANCE WERE LESS LIKELY TO
GET PREVENTIVE SERVICES.
AND SO THIS WAS A MAJOR MOVE IN
SEPTEMBER OF THIS YEAR, SO
ELISEO, THE DIRECTOR OF NATIONAL
INSTITUTE OF MENTAL HEALTH
ANNOUNCED THIS AT THE END OF
SEPTEMBER AFTER CONSULTATION
WITH THE DIRECTOR OF THE AGENCY
FOR HEALTH CARE RESEARCH AND
QUALITY, WHY IS THAT THE WAY
THAT WENT?
BECAUSE BY LEGISLATION THAT'S
HOW THAT'S DESIGNATED FOR THE
DECISIONAL AUTHORITY.
WHAT THIS DOES IS HELPS
ENCOURAGE RESEARCH OF THESE
POPULATIONS AND DIANA MENTIONED
THESE THIS MORNING BUT THEY ARE
WORTH REPEATING BECAUSE THEY ARE
HUGE CHANGES AT THE NIH.
NEXT SLIDE PLEASE.
SO, IN CONJUNCTION WITH THAT
ANNOUNCEMENT OF THE DESIGNATION,
THERE WAS ALSO ISSUANCE OF A
PROGRAM ANNOUNCEMENT WITH
SPECIAL REVIEW RELATED TO HEALTH
AND HEALTH CARE DISPARITIES IN
PERSONS LIVING WITH DISABILITIES
TO SUPPORT NOVEL AND INNOVATIVE
RESEARCH THAT EXAMINES AND
INTERVENES ON UNDERLYING
MULTI-LEVEL CAUSES, PATHWAYS AND
FACTORS ADVERSELY IMPACTING AS
THEY INTERSECT WITH OTHER HEALTH
DISPARITIES.
THE FIRST APPLICATION DEADLINE,
DO NOTE THIS IS IN FEBRUARY.
AND THERE ARE MULTIPLE
APPLICATION AND RECEIPT DATES
FOR THIS ONE SO PLEASE GET THE
WORD OUT TO YOUR COMMUNITIES
BECAUSE THIS IS A GREAT
OPPORTUNITY TO PUSH FORWARD
ADDRESSING SOME OF THE BARRIERS
TO HEALTH AND WELLNESS IN PEOPLE
WITH DISABILITIES.
NEXT SLIDE PLEASE.
ALSO I THINK SO MANY OF YOU ARE
AWARE OF THE WORKSHOP IN APRIL
TO RAISE AWARENESS OF ABLEISM IN
CLINICAL CARE AND RESEARCH
ENTERPRISE.
AND TO REALLY LOOK AT HOW WE CAN
MITIGATE THIS, MANY ARE ALREADY
VERY AWARE, I'M SURE THERE'S
BEEN DISCUSSION.
BUT I THINK, YOU KNOW, BOTTOM
LINE WE HAVE TO DO A BETTER JOB
OF ADDRESSING ABLEISM IN
RESEARCH AND HAVE TO INCLUDE
PEOPLE WITH DISABILITIES IN
TERMS OF THE INCLUSION AND
FUNDED STUDIES, ALSO IN THE
RESEARCH TEAM, WHICH I'M SUPER
GLAD TO HEAR THE DISCUSSION
EARLIER, THINKING ABOUT ABLEISM
AS POTENTIAL CAUSE OF HEALTH
DISPARITIES REFLECTED IN
RESEARCH WE FUND AND INCREDIBLY
IMPORTANT TO RECOGNIZE DIGNITY
AND VALUE OF DISABLED PEOPLE IS
CRITICAL TO THIS AND WE HAVE TO
THINK ABOUT ABLEISM AS A CAUSE
OF SOME DISPARITIES WE'RE
SEEING.
NEXT SLIDE PLEASE.
WE WERE ABLE RELEASE FUNDING
STUDENT SPECIFIC REQUEST FOR
APPLICATIONS HOW TO UNDERSTAND
AND MITIGATE HEALTH DISPARITIES
EXPERIENCED BY PEOPLE WITH
DISABILITIES INCLUDING
OBSERVATIONAL STUDIES AND SYSTEM
LEVEL INTERVENTIONS.
AND THOUGH THE APPLICATION
DEADLINE PASSED IN NOVEMBER OF
THIS YEAR, I WANT TO THANK
CO-SPONSORS, IT'S A GREAT WAY
FOR US TO PARTNER TO REALLY TRY
TO ADDRESS HOW THIS IMPACTS
HEALTH FOR PEOPLE WITH
DISABILITIES.
NEXT SLIDE PLEASE.
TURNING A BIT TO THE
ACCESSIBILITY RECOMMENDATIONS TO
THE NIH, WE LOOKED AT WHAT THE
RECOMMENDATIONS WERE.
SO, WE HAVE TRACKED A LOT OF
THINGS THAT WERE MENTIONED.
WE'RE THINKING ABOUT WHO IS
ACCOUNTABLE FOR THOSE.
THIS WENT TO THE STEERING
COMMITTEE OF THE NIH AND WAS
ASSIGNED TO THE DIVERSITY,
EQUITY, INCLUSION, AND
ACCESSIBILITY WORK GROUP.
AND SO WE'RE LOOKING AT THE
CULTURE OF THE NIH, AND ABLEISM
AS A SPECIFIC CONTRIBUTOR.
AND THEN RESEARCH POLICIES AND
SYSTEMS THAT WE CAN IMPACT TO
MAKE A DIFFERENCE.
NEXT SLIDE PLEASE.
SO, I HAVE THE OPPORTUNITY TO
WORK WITH TWO REALLY AMAZING
PEOPLE ON THIS WORK.
AND SO THE DISABILITY SUBGROUP
IS CO-LED BY MYSELF, KEVIN
WILLIAMS WHO COMES AS AN EQUAL
EMPLOYMENT OPPORTUNITY ATTORNEY,
DIRECTOR OF OFFICE OF EQUITY,
DIVERSITY, AND INCLUSION, SO
HE'S REALLY GOING TO BE SORT OF
ON THE SIDE OF LOOKING AT OUR
REASONABLE ACCOMMODATIONS,
PROGRAMS AND POLICIES, AS WELL
AS EMPLOYEE PROGRAMS AND
POLICIES HAVING TO DO WITH
DISCRIMINATION, HARASSMENT,
CIVILITY.
AND SO HE WILL BE WORKING A LOT
IN THOSE AREAS.
ELLEN ROLFES COMES TO US WITH A
BACKGROUND FROM THE OFFICE OF
HUMAN RESOURCES, OFFICE OF THE
DIRECTOR, NOW EXECUTIVE OFFICER,
REALLY UNDERSTANDS
ADMINISTRATIVE PROGRAMS, AND
THEY WILL LET ME COME ALONG FOR
THE RIDE.
I COME WITH I THINK A FAIRLY
SUBSTANTIVE HISTORY WORKING WITH
THE DISABILITY COMMUNITY
ESPECIALLY IN SCIENTIFIC AREAS.
NEXT SLIDE PLEASE.
SO HERE IS OUR ROLE, TO LEAD
ACTIONS TO IDENTIFY FOCUS AREAS
AND IMPLEMENT RECOMMENDATIONS,
TO PROVIDE CONSULTATION AND
DELIVERABLES TO LEADERSHIP AND
LEAD GROUPS WITH THEM.
SO IF WE'RE NOT THE LEAD BUT IT
INCLUDES ACCESSIBILITY WE WILL
BE CONSULTANTS FOR THOSE FOLKS.
I'LL GIVE YOU SOME EXAMPLES.
ENGAGE WITH INTERNAL AND
EXTERNAL COMMUNITY, FACILITATE
RELATIONSHIP BUILDING, SOMETHING
WE HAVE TO START WITH, RIGHT?
AS WE ALL KNOW, IT'S BEEN
APPROPRIATED BY A LOT OF FOLKS.
DISABILITY RIGHTS ORGANIZATIONS
REALLY COINED THE TERM NOTHING
ABOUT US WITHOUT US.
I'VE HEARD IT USED IN SO MANY
CONTEXTS, WHERE WERE YOU PEOPLE
IN THE 19 70'S AND '80s AND
'90s BUT WHATEVER.
I THINK AT ITS BASE IF WE DON'T
START THERE WE'RE GOING TO NOT
SUCCEED ON ANY OF THE THINGS
THAT WE ARE LAYING OUT HERE.
JUST KNOW THAT'S GOING TO
HAPPEN.
AND THIS IS ACTUALLY THE START.
NEXT SLIDE PLEASE.
INTERNALLY WE HAVE EMPLOYEE
INTEREST GROUPS AND GROUPS OF
TRAINEES INTERNALLY, REACHING
OUTSIDE, LOOKING AT POLICIES AND
PROCEDURES FOR ABLEIST LANGUAGE,
COMPORTING GUIDES, LOOKING AT
WORKFORCE TRAINING, INCREASE
PEOPLE'S KNOWLEDGE OF THE
DISABILITY COMMUNITY AND HOW TO
BEST DEMYSTIFY THAT IN THE
MIDDLE OF DEMYSTIFYING
DISABILITY, EASY THINGS TO HELP
PEOPLE ALONG WITH THIS.
COMPLIANCE WITH EXISTING LAWS,
CONSULT WITH NIH OFFICES LEADING
EFFORTS AND BUILD RESOURCES FOR
THE INSTITUTES AND CENTERS TO
PROMOTE INCLUSIVE PRACTICES IN
THEIR RESEARCH AND HIRE AND
RETAIN STAFF TO SUPPORT THE
RESEARCH.
NEXT SLIDE.
THE OTHER THING WE NEED TO THINK
ABOUT IS HOW DO WE INCREASE
OPTIONS FOR DISABLED PEOPLE IN
BIOMEDICAL AND BIOBEHAVIORAL
SCIENCE, HOW WE DO FUNDING AND
HOW THAT IMPEDES.
THERE'S NOIR ARTICLE IN "NATURE"
LAST WEEK ABOUT SPECIFIC
DISCIPLINES, WHAT ARE THE
ENVIRONMENTAL AND STRUCTURAL
BARRIERS PEOPLE FACE AS THEY
MOVE INTO VARIOUS ROLES SO THERE
WAS EXAMPLE IN THE CHEMISTRY
FIELD.
AND I PARTICIPATED IN ANOTHER
WORKSHOP HOSTED BY THE NATIONAL
ACADEMIES, WHERE WE HEARD FIRST
HAND FROM RESEARCHERS ACROSS
DISCIPLINES SORT OF WHAT GOT IN
THEIR WAY AS THEY TRIED TO MOVE
THROUGH THE FIELD.
HOW DO WE FUND ACCOMMODATIONS
AND/OR SUPPORTS FOR PEOPLE AS
THEY WRITE GRANTS AND SEEK
SUPPORTS FOR THEIR SCIENCE, ALSO
WHAT CAN WE DO IN THE INTRAMURAL
PROGRAM AND GROUP DOES INCLUDE A
NUMBER OF REPRESENTATIVES THAT
ARE VERY WELL ENGAGED IN OUR
INTRAMURAL SCIENCE PROGRAMS AS
WELL, FROM THE OFFICE OF
INTRAMURAL RESEARCH, OFFICE OF
INTRAMURAL TRAINING EDUCATION
AND CLINICAL CENTER.
HOW DO WE DO BETTER IN
RECRUITING, RETRAINING ADVANCING
CAREERS IN SCIENTISTS WITH
DISABILITY HERE AND WHAT
BARRIERS DO WE HAVE INTERNALLY
ON THIS.
NEXT SLIDE PLEASE.
THE OTHER THING WE HAVE TO DO
BECAUSE WE KNOW PART OF THIS IS
STRUCTURAL AND ENVIRONMENTAL,
RIGHT?
HOW DO WE ENABLE UNIVERSAL
DESIGN AND ACCESSIBILITY?
WE HAVE TO LOOK AT OUR
FACILITIES, WHEN WE DO
RENOVATIONS ARE WE MEETING THE
LETTER OF THE LAW WHEN IT COMES
TO ACCESS?
ARE WE MEETING THE SPIRIT OF THE
LAW, RIGHT?
SO IF YOU CAN ONLY HAVE IN A
CONFERENCE ROOM EIGHT PEOPLE
WITH WHEELCHAIRS, IF I CAN ONLY
GET THE FIRE MARSHAL TO ALLOW
THAT, THAT'S NOT WHERE WE NEED
TO BE, HAVING EXPERIENCED THAT
AND TALKING TO THE FIRE MARSHAL
MYSELF.
WE'RE GOING TO HAVE SOME
DISCUSSIONS.
WE HAVE TO THINK ABOUT BARRIERS.
I WILL TELL YOU OUR OFFICE OF
RESEARCH FACILITIES LEAD IS
INCREDIBLE WITH THIS.
SO ONE OF OUR FIRST ACTS WE SAW
A SIGN THAT INCLUDED ABLEIST
LANGUAGE, THEY ARE CHANGING ALL
THE SIGNS BY THE END OF THE
YEAR.
IT'S A LITTLE THING BUT IF I CAN
E-MAIL THE OFFICE OF RESEARCH
FACILITIES AND SAY, HEY, THIS IS
NOT COOL, WE GET IT CHANGED,
THAT'S A SMALL STEP BUT IT'S
SMALL STEPS THAT LEAD TO BIGGER
STEPS FROM MY PERSPECTIVE.
WE NEED TO ENSURE MATERIALS THAT
WE DISTRIBUTE TO PEOPLE ARE
COMPLIANT WITH SECTION 508 AND
OTHERS, CONSUMABLE, PLAN
LANGUAGE, SYSTEMS MAY NOT BE
COMPLIANT SO WE'RE WORKING WITH
CENTER FOR INFORMATION
TECHNOLOGY TO MAKE SURE A LOT OF
SYSTEMS THAT MAY NOT CURRENTLY
BE 508 COMPLIANT GET COMPLIANT.
NICHD THIS YEAR FOR EXAMPLE
FUNDED AND MADE COMPLIANT OUR
STRATEGIC REPORTING SYSTEMS
BECAUSE THEY WERE NOT COMPLIANT
WITH 508.
SO WE WILL ADVOCATE AT THAT
LEVEL.
WE ALSO NEED TO THINK ABOUT LOW
BARRIER OPPORTUNITIES TO
PARTICIPATE IN MEETING, REVIEW
AND ADVISORY COUNCILS AND MAKE
SURE OUR STAFF MEETINGS AND
GATHERINGS ARE ACCESSIBLE IN ANY
FORMAT THAT WE OFFER THEM.
NEXT SLIDE PLEASE.
SO WE ARE THINKING ABOUT HOW DO
WE DO THIS EFFICIENTLY AND
CONTRIBUTE TO THE LEADS TO THE
STRATEGIC PLAN, INTEGRATE THINGS
TO MOVE FASTER AND IDENTIFY GAPS
IN CURRENT EFFORTS IN AREAS FOR
METRIC DEVELOPMENT TO BE
ACCOUNTABLE.
NEXT SLIDE PLEASE.
WE'RE GOING TO BE FORMING THE
SUBGROUP WHICH WE'VE GOT ALL THE
INVITATIONS OUT AND HAD
EVERYBODY SIGNED UP WITHIN 24
HOURS.
SO WE HAVE A SMALL WORKING GROUP
THAT WE'RE PARTNERING WITH TO
MAKE THIS HAPPEN LOOKING AT DATA
SOURCES AND PARTNERS, SPECIFYING
TIMELINES AND DELIVERABLES.
I'M NOT GOOD ABOUT RUNNING
MEETINGS JUST FOR THE SAKE OF
RUNNING MEETINGS.
IT'S NOT MY BIG.
YEAH, THERE'S GOING TO BE
MOVEMENT HERE.
IF WE RUN INTO BARRIERS WE'LL
FIND WAYS TO WHEEL OVER THEM.
NEXT SLIDE PLEASE.
SO LET ME GIVE EXAMPLES OF SOME
THINGS WE'RE GOING TO DO.
KEVIN WILL BE THINKING ABOUT OUR
REASONABLE ACCOMMODATION
PROCESS, HE STARTED
CONVERSATIONS ABOUT HOW WE DO
THAT BEFORE SOMEBODY COMES ON
BOARD AND SORT OF EASY WINS,
WHAT CAN WE APPROVE WITHOUT A
SUPERVISOR HAVING TO THINK ABOUT
IT, JUST WHEN YOU COME ON BOARD
IF YOU NEED THIS JUST TELL US.
YOU DON'T HAVE TO GO THROUGH
MEDICAL STUFF, JUST TELL US YOU
NEED DRAGON, THAT'S FINE.
WHAT DATA DO WE HAVE TO MAKE
INTERNAL DECISIONS AND WHAT ARE
WE DOING TO ENGAGE PEOPLE WHEN
THEY COME IN SO THAT IF THERE'S
A COMMUNITY, NEURODIVERSITY
COMMUNITY, COMMUNITY OF BLIND
NIH EMPLOYEES, HOW DO WE CONNECT
YOU FROM THE BEGINNING SO YOU
DON'T HAVE TO FIND THOSE FOLKS
YOURSELF.
AND WHAT SHOULD WE DO IN TERMS
OF EMPLOYMENT BEST PRACTICES,
WE'RE GOING TO LOOK AT OUR
PREVENTION OF DISABILITY
DISCRIMINATION POLICY AND
EDUCATION AND HOW DO WE
INTEGRATE THAT WITH OTHER OF OUR
HARASSMENT AND DISCRIMINATION
EDUCATION PROGRAMS.
ELLEN WILL LOOK AT THIS
DAY-TO-DAY NUTS AND BOLTS STUFF,
BETTER INCLUDE DISABILITY, 508
COMPLIANCE.
IF YOU'RE GOING TO BUILD A
SYSTEM HOW DO WE VERIFY IT'S 508
COMPLIANT AND STAY COMPLIANT.
HOW DO WE LOOK AT FACILITIES AND
RESOURCES FOR ACCESSIBILITY SO
WE'VE BEEN TALKING TO ORF ABOUT
HOW DOES A PERSON WITH
DISABILITY AS THEY ENTER WITH
THE NIH, MAKE ACCOMMODATIONS AND
RENOVATIONS OF LAB FACILITIES,
WHAT ACTIONS DO WE HAVE FOR LIKE
HOODS OR EQUIPMENT.
SO LOOKING AT SOME OF THOSE
THINGS TO MAKE THE ENVIRONMENT
MORE ACCESSIBLE.
HOW DO WE DO BETTER IN
RECRUITMENT AND HIRING TO THE
DISABILITY COMMUNITY, WHAT ARE
WE DOING AND WHAT CAN WE DO
BETTER.
THERE'S A BENEFIT.
YOU CAN DIRECT HIRE A PERSON
WITH A DISABILITY MUCH EASIER
THAN YOU CAN DO THROUGH A GLOBAL
SEARCH.
AND SO I SEE THAT AS A BENEFIT
AND HARD HIRING ENVIRONMENT.
WE'RE ALSO LOOKING AT NIH
POLICIES FOR ABLEIST LANGUAGE.
I'M GOING TO LOOK AT SOME
RESOURCES THAT WE HAVE FOR
DISABILITY INCLUSION AND
RESEARCH PROGRAMS.
THERE'S WORK GOING ON, WE WANT
TO EXPAND AND INCLUDE LIVED
EXPERIENCE.
LOOKING AT OUR POLICY LANGUAGE
FOR SCIENCE, ENSURING THAT THAT
IS NOT ABLEIST IN ITS APPROACH.
LOOKING AT ACCESSIBILITY SOME
SYSTEMS FOR GRANTS AND REVIEW,
THINKING ABOUT HOW WE BETTER
STRENGTHEN OUR WORKFORCE OF
SCIENTISTS WITH DISABILITIES,
PREVENTING DISABILITY
DISCRIMINATION AT THE
ORGANIZATION LEVEL.
DEAL WITH HAVE SOME LEVERS WE
CAN PULL IN THAT AREA.
SO FOR SCIENTISTS WE KNOW WE'RE
FACING DISCRIMINATION OR
HARASSMENT AT THEIR
ORGANIZATIONS WHO HAVE AN NIH
AWARD.
WE CAN LOOK AT FUNDING POLICY
AND FIND WAYS TO HELP THEM.
NEXT SLIDE PLEASE.
SO, I REALIZE YOU ARE AT THE
END OF ON LONG DAY.
IF HAVE YOU NO QUESTIONS BECAUSE
YOUR BRAINS ARE FRIED THAT'S
FINE BUT I WANT TO OPEN UP FOR
QUESTIONS.
I THINK I LEFT 15 MINUTES AND
THANK YOU ALL SO MUCH FOR ALL
THE SUPPORT THAT WE MAY BE
ASKING YOU FOR AS WE MOVE
FORWARD WITH THIS WORK.
AND ALSO WE'LL PROBABLY BE
ASKING SOME OF YOU FOR
ENGAGEMENT OPPORTUNITIES WE MAY
NEED FOR SOME OF THIS TO ENSURE
THAT WE GET THE ENGAGEMENT TO
LAUNCH THIS CORRECTLY.
SO WITH THAT I WILL END.
>> THANK YOU SO VERY MUCH FOR
THAT ARE, INDEED.
LIFE WITH POSSIBILITIES, AND
PROJECTS.
LEWIS HAS A QUESTION.
GO AHEAD.
>> THANK YOU SO MUCH.
REALLY INTERESTING PRESENTATION.
AWESOME PRESENTATIONS ACROSS THE
BOARD.
I WAS EXCITED TO SEE ABOUT THE
DISCUSSION OF WORKFORCE
DEVELOPMENT FOR DISABILITY
COMMUNITY.
I'M REALLY AMPED ABOUT THAT FOR
A LOT OF REASONS.
GOING BACK TO MY DAYS ON STATE
REHAB COUNCIL IN GEORGIA, THIS
WAS ONE OF THE THINGS THAT CAME
UP A GOOD BIT OF TIME, REALLY
BECAUSE FOLKS FROM THE
DISABILITY COMMUNITY WERE
CONCERNED ABOUT -- I TALKED A
LITTLE BIT ABOUT THIS TODAY,
CONCERNED ABOUT PEOPLE NOT BEING
USED TO SEEING PEOPLE WITH
VARIOUS DISABILITIES IN THE
SCIENTIFIC COMMUNITY AS A WHOLE.
THEY ARE NOT IN LABS, NOT AT
UNIVERSITIES IN CLIA WAYS
CONNECTED TO THE RESEARCH
INFRASTRUCTURE.
I WAS CURIOUS, NUMBER ONE, TO
KNOW IF PART OF THE WORK MOVING
FORWARD FOR YOUR STRATEGIC
PLANNING GROUP THERE LEVERAGES
VOC REHAB BUT ALSO THIS IS
CONVERSATION COMES UP A LOT HERE
IN GEORGIA, HOW CAN WE ENCOURAGE
MORE DISABILITY, MORE DISABLED
PERSONS TO BE PART OF OUR STEM
EDUCATION HERE?
THIS IS A CHALLENGE HONESTLY TO
CONVINCE INDIVIDUALS THAT PEOPLE
FROM DISABLED BACKGROUNDS
DESERVE A SPOT AT THE TABLE
WITHIN OUR BACHELOR'S DEGREE
PROGRAMS, WITHIN OUR MASTER'S
PROGRAMS, AND HOW CAN WE REALLY
LEVERAGE THOSE TWO THINGS TO
PROMOTE THAT MORE AT AN
EDUCATIONAL LEVEL AS WELL AS
RESEARCH LEVEL.
>> SUCH A GREAT QUESTION, LEWIS.
GREAT TO SEE YOU, FIRST OFF.
AND SO I THINK PART OF THIS IS
EDUCATION, RIGHT?
I THINK IT STARTS AND ENDS WITH
YOU HAVE TO UNDERSTAND THAT
SIMPLY BECAUSE SOMEBODY PRESENTS
IN A CERTAIN WAY AND THESE ARE
ASSUMPTIONS PEOPLE MAKE, THE
THING WE HAVE TO EDUCATE AND
OVERCOME, HOW DO WE START WITH
THIS IS A SCIENTIST, AND NOT
THIS IS A PERSON WITH A
DISABILITY WHO HAPPENS TO BE A
SCIENTIST.
I WOULD RATHER START WITH THIS
IS A SCIENTIST, RIGHT?
THIS IS A PERSON WHO IS
INTERESTED IN THE SCIENCES.
THAT IS GOING TO TAKE A CULTURE
CHANGE, WHICH IS NOT A QUICK
THING TO DO.
SO SOME OF THE THINGS I HAVE
LISTED ARE QUICK WINS.
WHY?
BECAUSE TO GET THE ENERGY OF THE
COMMUNITY BEHIND THIS YOU HAVE
TO DEMONSTRATE SOME PROGRESS.
IT'S WHAT WE DID ALONG, LONG
TIME AGO IN A GALAXY FAR AWAY
WHEN I STARTED HERE.
BUT THE OTHER THING IS I THINK
TO GET THAT LEVEL OF ENGAGEMENT
WE'LL NEED A LOT OF GROUPS RUN
IN THE SAME DIRECTION, AND THAT
INCLUDES THE AUCD, ASSOCIATION
OF UNIVERSITIES AND COLLEGES
WITH DISABILITY, TO GET IN NOT
JUST ON RESEARCH FOR IDD BUT
ALSO RESEARCH INCLUDING PEOPLE
TO DO THIS RESEARCH WITH
DISABILITY, RIGHT?
WE HAVE TO THINK ABOUT THE
AMERICAN ASSOCIATION FOR PEOPLE
WITH DISABILITIES, AMERICAN
ASSOCIATION FOR HEALTH AND
DISABILITY, ALL OF THESE
ORGANIZATIONS WE'LL HAVE TO
REACH OUT TO, TO SAY I'M NOT
MAKING THIS UP BY MYSELF RIGHT
NOW.
THAT'S A GOOD IDEA.
THERE'S LOTS OF PEOPLE WHO
THOUGHT ABOUT THIS FOR A VERY
LONG TIME.
BUT AS THE NIH WE CAN CONVENE,
PUSH, AND WE CAN POTENTIALLY
FUND, RIGHT?
AND SO HOW DO WE MAKE THAT
HAPPEN?
HOW DO WE EDUCATE PEOPLE?
I'M NOT DOING THAT OUT OF THE
BOX WITHOUT TALKING TO PEOPLE
THINKING ABOUT IT FOR A REALLY
LONG TIME.
AND WHAT'S WORKED AND WHAT
HASN'T, IF IT HASN'T WORKED WHY
HASN'T IT WORKED AND CAN WE
CHANGE THE WAY WE APPROACH IT
AND MAYBE TRY IT AGAIN, RIGHT?
I NEVER THINK THAT, YOU KNOW, I
CAN'T REMEMBER MY CAR KEYS,
RIGHT?
I HAVE TO TRY DIFFERENT
APPROACHES.
ONCE I FIND A WAY TO WORK THAT'S
THE WAY I DO IT.
I CAN TRY A BUNCH OF THINGS
FIRST SO IF I LEARN FROM WHAT
DIDN'T WORK MAYBE I CAN FIGURE
OUT WHAT COULD WORK IN THE
FUTURE.
SO, I THINK IT'S A GREAT
QUESTION.
I'VE ALREADY HAD SOME
CONVERSATIONS.
IF THERE ARE ORGANIZATIONS OR
PARTNERS YOU THINK I NEED TO
CONNECT WITH, THAT'S THE INPUT
WE NEED GOING FORWARD SO NEVER
HESITATE TO E-MAIL ME.
ACTUALLY I READ MY E-MAIL AND
KEEP IT UNDER TWENTY SO I DO
RESPOND AND HAVE A RESOURCE
DOCUMENT I'M WORKING EVERY DAY
ON THIS TO START THIS UP RIGHT
SO WHEN WE ENGAGE, WE ENGAGE
QUICKLY.
WE ALSO HAVE SCIENTISTS INTERNAL
HERE WHO THOUGHT ABOUT THIS AS
WELL SO KNOW THE COMMITTEE
INCLUDES PEOPLE WITH LIVED
EXPERIENCE, WE'RE GOING TO
ENGAGE OUR GROUPS IN THIS AREA.
>> MICHELLE?
>> THANK YOU.
WE HAVE A LOT OF SCIENTISTS THAT
ARE LIVING WITH DISABILITIES AND
I TOTALLY LOOK UP TO LIKE DR.
COOPER AND DR. ESKONAZI.
I WONDER IS THERE ANY NOT TO
TALK TO THEM ABOUT THEIR
PROCESSES, YOU KNOW, I THINK I
PERSONALLY THINK ABOUT THIS
ISSUE, THE SAME WAY WHEN WE
THINK ABOUT MINORITIZED
POPULATIONS IN THAT SOMETIMES I
WALK IN THE ROOM AND I'M SEEN AS
A BLACK PERSON FIRST, SCIENTIST
NEXT.
SO THESE ARE CULTURAL ISSUES
THAT WE HAVE IN AMERICA, AND NOW
WE'RE KIND OF LIKE PUTTING A
LENS AND THINKING ABOUT THIS
FROM THE PERSPECTIVE OF A PERSON
WITH DISABILITY, AND I THINK
SOME THINGS WE'VE LEARNED FROM
DEALING WITH PEOPLE OF COLOR AND
MINORITIZED COMMUNITIES OR
PEOPLE THAT ARE POOR AND HAVING
TROUBLE SEEING THEM SUCCEEDING,
WE CAN APPLY THIS TO, YOU KNOW,
THE COMMUNITY THAT WE REALLY
WANT TO HELP RIGHT NOW AND I'M
ALSO REALIZING SOMETIMES IT
HELPS TO SEE SOMEONE THAT LOOKS
LIKE YOU OR HAS ISSUES LIKE YOU
DO BE AT THE FOREFRONT OF
PROMOTING.
HEY, SEE, I CAN DO IT.
THEREFORE, YOU CAN.
YOU DON'T KNOW HOW MANY YOUNG
PEOPLE COME UP TO ME AND GO,
WHOA, THE FACT THAT YOU'RE HERE
MEANS THAT NOW I HAVE AN IDEA
THAT I CAN BE THERE TOO.
I'M JUST PUTTING THAT IN THAT,
MAYBE THERE NEEDS TO BE A PUBLIC
PUSHING THESE SCIENTISTS TO THE
FOREFRONT SO PEOPLE SEE, HEY, HE
DID IT, I CAN DO IT, YOU KNOW?
>> I THINK IT'S A GREAT POINT.
REPRESENTATION DOES MATTER.
WE'VE SEEN THAT IN RESEARCH.
AND TO THE EXTENT THAT WE THINK
ABOUT HOW TO ELEVATE THAT, WE
TALKED ABOUT THIS AND I'M TRYING
TO REMEMBER.
I WANTED TO LOOK IT UP BUT I
DIDN'T HAVE TIME.
THERE WAS A SESSION ON THIS
2016, 2017, IF I REMEMBER
CORRECTLY, WHERE WE TALKED ABOUT
THIS AS WELL.
AND I THINK, YOU KNOW, IF IT'S A
CONVENING, A CAMPAIGN, WE CAN
THINK ABOUT HOW TO DO THAT.
THERE ARE WAYS TO DO IT.
BUT I ALSO WANT TO DO IT WITH
RESPECT TO THE PEOPLE WHO
PARTICIPATE THAT WE RESPECT
THEIR SCIENTIST FIRST, YOU KNOW,
PHYSICIAN FIRST, PSYCHOLOGIST
FIRST, RIGHT?
THERE'S ALSO THE INTERSECTIONAL
PIECE, WE'VE BEEN TALKING ABOUT
THIS A LOT.
I THINK THIS WAS BROUGHT UP IN
THE NIMHD COUNCIL, PEOPLE WITH
DISABILITIES ACTUALLY HAVE
INTERSECTIONAL REPRESENTATION
RIGHTS, SOME FACING NOT ONLY
STIGMA AROUND DISABILITY BUT MAY
BE PART OF A MINORITY GROUP, MAY
ALSO HAVE A DIFFERENCE IN
GENDER.
MAY ALSO BE POOR, FROM A RURAL
LOCATION.
ONCE YOU START STACKING THOSE
ODDS AGAINST SOMEBODY IN THIS
PARTICULAR FIELD, IT GETS REALLY
HARD.
WE'RE NEVER GOING TO SHOW ALL OF
THAT, BUT I THINK WHAT WE HAVE
TO CONSIDER IS HOW ARE WE
INCLUDING AND MAKE THIS
ACCESSIBLE AND REACHABLE.
ACCESSIBILITY IS PART OF THAT.
THAT'S THE REASON I LIKE THAT
WE'VE PUT IT TOGETHER BECAUSE I
MAY BE ABLE TO INTEGRATE WITH
OTHER EFFORTS WHERE WE'RE
ELEVATING THIS MOVING FORWARD.
TRISHA?
OH, SORRY.
>> OKAY, YEAH, GOOD.
NO, THANKS.
THIS MAY SOUND OLD AND MAYBE
SILLY TO SOME BUT LOOK AROUND
THIS ROOM, SITTING AT THIS
TABLE, WHO ARE IN POSITIONS OF
WHAT'S CONSIDERED LEADERSHIP WHO
ARE WOMEN AND THAT WAS PEOPLE,
THE YOUNGER FOLKS, THAT WAS A
LONG HAUL THAT TOOK A LOT OF
CULTURAL CHANGE, MINDSET CHANGE,
THE IDEA THAT WE HAD THE
CAPABILITIES OF BRAINS COULD
HANDLE IT.
I MEAN, SERIOUSLY.
AND WE KIND OF FORGET THAT PATH.
THERE'S BEEN A LOT OF SUCCESSES
THERE.
THERE'S STILL A WAY TO GO WHEN
YOU STEP OUTSIDE OF THE
GOVERNMENT, THE MILITARY
SERVICE, YOU LOOK AT
CORPORATIONS AND WHO IS IN THOSE
CEO, COO, IT'S VERY LOW
REPRESENTATION OF WOMEN.
BUT THE POINT IS WE WALK THE
MATH, AND WE'VE GOTTEN TO A
PRETTY, YOU KNOW, FAR ALONG
HERE, SO IT'S DOABLE.
BUT LIKE YOU SAID, A LOT OF IT
IS THE MINDSET AND THE CULTURAL
CHANGE THAT'S GOT TO BE THERE.
IT'S JUST GOT TO BE THERE.
>> YEAH, AND I THINK NIH HAS
MADE SERIOUS CHANGE THERE.
WHEN WE START, WHEN I STARTED,
THERE WERE THREE WOMEN
DIRECTORS, ONE OF WHOM WAS
ACTING.
NOW THE NIH DIRECTOR IS A WOMAN,
12 I.C. DIRECTORS OF THE 27 WHO
ARE WOMEN.
THAT'S A HUGE CHANGE.
AND SO, YOU KNOW, CAN WE DO IT?
YEAH.
DOES IT TAKE INSTITUTIONAL
COMMITMENT?
YEAH.
DOES IT TAKE A LONG VIEW?
YEAH.
CAN IT BE DONE?
I DON'T SEE WHY NOT.
>> CHERI?
>> YEAH, THANK YOU.
SO, I'LL ADMIT THIS IS MORE OF A
COMMENT, I DIDN'T WANT TO TAKE
AIR TIME IF THERE WERE OTHER
QUESTIONS.
SINCE WE'RE GETTING INTO
COMMENTS, I WANTED TO CHIME IN
AND SAY DEEP GRATITUDE TO YOU,
ALLISON, FOR YOUR LEADERSHIP AND
THERESA, RALPH, DR. BIANCHI,
ANGOLI, THIS SEEMS LIKE WE
REACHED A TIPPING POINT, A SEA
CHANGE IN TERMS OF THE NIH'S
COMMITMENT TO ADDRESSING ABLEISM
AND ONGOING DISPARITIES TOWARDS
PEOPLE WITH DISABILITIES IN
RESEARCH AND I THINK THAT IT'S
SO ENCOURAGING TO SEE THE
ALLYSHIP HAPPENING ACROSS THE
NIH, SEVERAL AGENCIES, IT MAKES
IT SO MUCH EASY EASIER FOR
THOSE IN SCIENCE AND MEDICINE
AND LIVED EXPERIENCE TO JUMP ON
BOARD BECAUSE WE SEE THE
MOMENTUM AND ALLYSHIP HAPPENING.
SIGN ME UP FOR WHATEVER WAY I
CAN HELP.
I WANT TO THANK YOU FOR THIS
ISSUE -- INCREDIBLE EFFORT AND
PUTTING PASSION AND EXPECTATION
BEHIND THIS WORK AND WANTED TO
MAKE SURE THAT WAS ON THE
RECORD.
THANK YOU.
>> LOOK, YOU GUYS KNOW, I GET
ALL EMOTIONAL, BUT I THINK THE
ISSUE IS RIGHT THAT I'M GOING TO
DO THE BEST I CAN WITH WHAT I
HAVE, RIGHT?
I'M NOT A PERSON WITH A
DISABILITY.
I'VE HAD FUNCTIONAL IMPAIRMENTS
OVER THE COURSE OF MY LIFE BUT
IF YOU LOOK AT ME YOU DON'T
THINK THAT'S A PERSON WITH A
DISABILITY.
FOR PEOPLE WHO HAVE VISIBLE
DISABILITIES AND INVISIBLE
DISABILITIES THE BEST WE CAN DO
IS ENSURE THAT THEY HAVE THE
SAME RESPECT, VALUE, DIGNITY
THAT EVERYBODY ELSE DOES.
SO, YEAH, TRUST ME, WE'LL BE
REACHING OUT BECAUSE I HAVE THE
HUMILITY TO KNOW I DON'T KNOW.
AND ALWAYS HAVE.
SO MY CO-CHAIRS, I WILL TELL
YOU, HAVE THE SAME HUMILITY.
SLOW WE WILL CONTINUE TO
CHAMPION THIS AS MUCH AND AS
LONG AS AND HARD AS WE CAN AND I
HAVE A STRATEGY FOR EVEN IF THEY
TELL ME MAYBE THIS ISN'T THE BIG
THING YOU'LL BE DOING, SAY, IN
NOVEMBER OF 2024, THERE WILL BE
WAYS IN WHICH I CAN REFRAME THIS
TO KEEP WORKING ON IT SO DON'T
GIVE UP ON IT EVEN IF YOU THINK
IT'S TIME TO GIVE UP ON IT.
>> THANKS, ALISON.
>> KATHLEEN AND FRANCISCO.
>> THIS IS -- I'M NOT SURE THIS
IS ACTUALLY INCLUDED IN WHAT
YOU'RE TALKING ABOUT BUT WHAT
COMES TO MIND WHAT ABOUT THINGS
THAT ARE TRANSIENT LIKE
PREGNANCY, INCLUSION OF THAT,
BECAUSE I FELT EVEN MY OWN
PREGNANCY IT'S A REALLY VISIBLE
THING AND PEOPLE COMMENT ON IT
AND MAKE JUDGMENTS.
I FEEL LIKE I HAVE SOME, YOU
KNOW, SEMBLANCE, SIMILAR TO
DISABILITY ALTHOUGH TRANSIENT.
SO I THINK DISABILITY AS WE ALL
KNOW CAN BE, YOU KNOW, A
TEMPORARY, RIGHT, ALL OF US KNOW
AT SOME POINT WE'LL HAVE A
DISABILITY.
I DO NOT HAVE ARROGANCE TO THINK
I'LL NEVER HAVE A DISABILITY.
IT'S VERY FUNNY, EVERY TIME
SOMEBODY TALKS ABOUT PREGNANCY
AS SOMETHING THAT'S SO
RECOGNIZABLE I THINK OF BEING IN
AN ELEVATOR IN THE BALTIMORE
V.A. HOSPITAL, WITH SOMEBODY
TOUCHING MY STOMACH SAYING, YOU
KNOW, OH, YOU'RE PREGNANT.
I TOUCH THEIR STOMACH BACK.
THEY WERE LIKE, WHAT ARE YOU
DOING?
I'M LIKE I COULD ASK YOU THE
SAME QUESTION.
I DON'T HAVE THE HUMILITY TO
THINK LIKE PEOPLE DON'T DO SILLY
THINGS JUST BECAUSE SOMETHING IS
STARING THEM IN THE FACE, RIGHT?
I MEAN, I WILL SAY IF YOU'RE
EVER PREGNANT REALLY DO THAT
BECAUSE IT'S HILARIOUS.
BUT WE THINK ABOUT PREGNANCY A
LOT HERE.
THE OTHER THING WE THINK ABOUT A
LOT TOO IS YOU HAVE THE STIGMA
OF DISABILITY, IF YOU PUT
REPRODUCTIVE HEALTH ON TOP OF
THAT GOOD LUCK.
I HAD TO ANSWER A QUESTION FROM
A REPORTER, I CAN'T MAKE THIS
UP.
WE DID A PRESS EVENT AROUND
PREGNANCY AND SPINAL CORD
INJURY.
A REPORTER SAID HOW DID THEY GET
PREGNANT?
I WAS LIKE, OKAY, WE MAY NEED TO
BACK UP A LITTLE BIT.
I DON'T KNOW IF ANYBODY'S TALKED
TO YOU ABOUT HOW PEOPLE GET
PREGNANT.
THEY WERE LIKE, WAIT A MINUTE, I
WAS LIKE, YEAH, THE NORMAL WAY.
LIKE EVERYBODY ELSE.
AND IF THEY NEED FERTILITY
TREATMENT IT'S BECAUSE THEY HAVE
A PROBLEM WITH INFERTILITY, NOT
BECAUSE OF THE SPINAL CORD
INJURY BUT THESE ARE ABLEIST
ASSUMPTIONS PEOPLE MAKE.
WHEN WE THINK INTERSECTIONALITY,
WE KNOW THIS WITH MATERNAL
HEALTH CRISIS, THERE'S
SIGNIFICANT MORBIDITY AFTER
PREGNANCY SO, YES, PEOPLE HAVE
DISABLING CONDITIONS, WE HAVE TO
THINK ABOUT THAT.
THAT'S ON MY MIND.
WE DO WORK ON PREGNANCY HERE.
I DON'T KNOW IF YOU KNOW THAT
BUT WE DO.
AND WE DO A LOT OF WORK ON
REPRODUCTIVE HEALTH CARE ACCESS,
EVEN SOME CONTRACEPTIVE METHODS
WE HAVE DO NOT WORK WELL FOR
PEOPLE WITH DISABILITY, SAME AS
WE LEARNED WITH COVID TESTING.
WE'LL HAVE TO THINK ABOUT
ACCESSIBILITY AT ALL LEVELS,
YOU'RE RIGHT, THERE ARE
TRANSIENT AND TEMPORARY
DISABILITIES, WE HAVE TO THINK
ABOUT INVISIBLE DISABILITIES AND
CONFRONTING STIGMA THAT PEOPLE
DON'T HAVE PARTS OF THEIR LIVES
THAT ARE IN FACT PARTS OF THEIR
LIVES WE STILL HAVE TO DO
RESEARCH ON.
SO IT'S SOMETHING I THINK ABOUT
A LOT HERE.
>> FRANCISCO?
>> DO WE STILL HAVE TIME?
WE'RE OVER.
>> I HAVE ALL THE TIME IN THE
WORLD.
>> WELL, FIRST OF ALL, THANK YOU
FOR LEADING THE CHARGE IN THIS.
AS PART OF THE TRAINING WORKING
GROUP WE HAVE LONG DISCUSSIONS
ABOUT HOW TO DIVERSIFY ALONG
EVERY DIMENSION.
AND ONE OF THEM WAS THERE SEEMS
TO BE AN INSTITUTIONAL
REQUIREMENT THAT FOR YOU TO BE
ABLE TO PURSUE THESE KINDS OF
GRANTS, SUPPLEMENTS, YOU HAVE TO
BE ALREADY SAY EN ENROLLED IN A
Ph.D. PROGRAM, UNLIKE THE NSF
WHERE THE FLAGSHIP DIVERSITY
MECHANISM, HUGELY SUCCESSFUL, IS
A GRADUATE RESEARCH FELLOWSHIP
ACTUALLY SOMETHING PEOPLE APPLY
FOR ON THEIR OWN.
THEY GET IT ON THEIR OWN BEFORE
BEING ADMITTED ELSEWHERE AND CAN
PICK AND CHOOSE WHERE THEY WANT
TO GO.
THIS HAS BEEN A TREMENDOUSLY
EFFECTIVE TOOL FOR DIVERSITY.
AND SO PERHAPS SINCE WE'RE
TALKING, HEY, THE SKY'S THE
LIMIT THERE MIGHT BE A
POSSIBILITY TO ALLOW DIVERSITY
THROUGH THOSE MECHANISMS, SO
THAT PEOPLE ARE NOT APPLYING FOR
THOSE ONLY WHEN THEY ARE ALREADY
IN THE SYSTEM WHICH IS ACTUALLY
REDUCING THE PIPELINE
TREMENDOUSLY.
>> I APPRECIATE THAT.
MY HOPE IS THAT DR. CRUZ BRINGS
THAT DISCUSSION IN.
WE'RE LOOKING IN OUR TRAINING
PROGRAMS AT NICHD RIGHT NOW BUT
REWEI HAVE OTHER MECHANISMS TO
BRING PROPOSED CHANGES TO
PROGRAMS.
WE DO HAVE BOTH INDEPENDENT AND
INSTITUTIONAL BUT THEY ARE
DIFFERENT PHASES OF TRAINING
THAN THE NSF SO DEFINITELY
SOMETHING TO -- I'LL LOOK OVER
TO DR. CRUZ WHO IS --
>> I KNOW, FRANCISCO, WE'RE
TRYING.
>> CASE IN POINT.
I DO HAVE PEOPLE WHO HAVE, YOU
KNOW, CHALLENGES AND WHEELCHAIR
USERS, THEY CAN NOT APPLY.
AND FOR THEM TO BE ADMITTED, THE
PROGRAMS NEED TO ADMIT THEM.
DOUBLE LAYER.
WE'VE DISCUSSED IT AS LENGTH.
I JUST WANTED TO BRING THIS UP
BECAUSE I THINK IN THE SPIRIT OF
WHAT DR. CERNICH IS DOING IT'S
VERY MUCH THE SKY'S THE LIMIT
HERE.
>> YEAH.
IT'S SOMETHING WE CAN BRING UP.
I ALSO AM VERY GOOD AT JUST
BRINGING THINGS UP.
I'M HAPPY TO BE TOLD NO BUT I'M
ALSO REALLY HAPPY TO BRING IT UP
KNOWING THAT MAYBE I CAN
CHALLENGE SOMETHING.
SO, DR. CRUZ AND I WILL -- FULL
DISCLOSURE SHE'S ON THE
COMMITTEE SO YOU HAVE A VOICE ON
THAT COMMITTEE AND SO SHE I'M
SURE WILL BRING THAT IN AS WE
START TALKING ABOUT OUR POLICIES
AND PROGRAMS.
>> THANK YOU SO MUCH.
AND I WANT TO THANK EVERYONE FOR
BEING ACTIVE AND ENGAGED.
ALL OF THESE HOURS LATER.
I HAVE TO SAY, NOBODY HAS
FLAGGED.
IT'S JUST BEEN TOTALLY ENGAGED.
AND TO RALPH AND THERESA.
THANK YOU FOR ALL YOU'VE DONE.
AND TO OUR HEROES, AT THE END OF
THE DAY, FOR MAKING SURE WE WERE
STILL ABLE TO DO THINGS WE
WANTED TO DO.
WE'LL START AGAIN TOMORROW
MORNING AT 9:00.