>>WELCOME, I'M
ERIC PERREAULT FROM NORTHWESN
ALBERTA.
I'D LIKE TO START TODAY BY DOING
A ROLL CALL AND AS I CALL ON
EACH OF YOU, IF YOU CAN PLEASE
LET US ME YOUR A
ATION
AND WE HAVE TWO NEW MEMBERS AND
I'LL INTRODUCE AT THE END AND
LOUIS AND KATHLEEN, WHEN YOU ARE
INTRODUCING YOURSELVES, TAKE THE
TIME TO TELL US MORE ABOUT WHAT
YOU DO OUTSIDE OF THIS ADVISORY
BOARD.
SO, FIRST MEMBER IS -- [ROLL
CALL] PLEASE ANNOUNCE THAT YOU
ARE HERE AND GIVE YOUR
AFFILIATION.
[ROLL CALL]
I'M PROFESSOR AT GEORGIA TECH.
>>Chair Dr. Perreault: SINCE
THIS IS YOUR FIRST MEETING,
WOULD YOU MIND TELLING US MORE
ABOUT YOUR RESEARCH?
>>SURE.
MY RESEARCH AREA IS FOCUSED IN
ON UNDERSTANDING NERVE
REHABILITATION AND PEOPLE WITH
UPPER LIMB LOSS AND HOW PEOPLE
LEARN HOW TO USE PROSTHETIC
TECHNOLOGIES THROUGH PRINCIPLES
OF MOTOR LEARNING AND NEURO
REPAIR.
>>Chair Dr. Perreault: THANK
YOU.
>>KATHLEEN.
>>HI, I AM REALLY PLEASED TO BE
HERE.
I WORK WITH THE NATIONAL M.S.
SOCIETY AND I HAVE A DEGREE IN
OCCUPATIONAL THERAPY AND
EXERCISE PHYSIOLOGY AND SCIENCE
AND MY RESEARCH FOR 15 YEARS WAS
FOCUSED ON UNDERSTANDING GAIT
AND BALANCE AND DEGENERATING,
NEURO DEGENERATING CONTINUES AND
I FOLLOWED THAT PORTFOLIO AT THE
NATIONAL M.S. SOCIETY SO I'M
VERY HAPPY TO BE HERE.
THANK YOU,.
>>Chair Dr. Perreault: THANK
YOU AND WELCOME TO BOTH OF YOU.
I WOULD LIKE TO NOTE WE HAVE
SEVERAL NEW MEMBERS WHO ARE
STILL BEING CLEARED TO ACTIVELY
PARTICIPATE IN THE MEETING, BUT
THEY'RE OBSERVING THROUGH THE
NIH VIDEO CAST.
IN ADDITION TO OUR BOARD
MEMBERS, WE HAVE SEVERAL
EX-OFFICIO MEMBERS AND GIVE YOUR
AFFILIATION.
DIANA BIANCHI.
>>Dr. Bianchi: I HAVE TO
UNMUTE.
HELLO, EVERYBODY, I'M THE
DIRECTOR OF NICHD AND I'M SPEAK
>>Chair Dr. Perreault: DELLFANC
HEN.
>>I'M HERE REPRESENTING THE
NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDER AND
STROKE.
>>THERESA.
>>GOOD MORNING, I'M THE
DIRECTOR OF NCMRR.
THANK YOU FOR BEING HERE.
>>PATRICIA.
>>HI, GOOD MORNING, I'M WITH
THE DEPARTMENT OF VETERAN
AFFAIRS AND RESEARCH AND
DEVELOPMENT AND REHABILITATION
RESEARCH AND DEVELOPMENT SERVICE
WHERE I SERVE AS THE DIRECTOR
AND WE ARE CLOSE PARTNERS WITH
NCMRR.
THANK YOU.
>>Chair Dr. Perreault: ROBERT.
>>GOOD MORNING, I'M THE ACTING
DEPUTY DIRECTOR FOR PUBLIC
COORDINATION PLANNING AND
STRATEGIC INITIATIVES HERE AT
NIH.
THANK YOU.
>>JEROME FLAG.
>>GOOD MORNING, THIS IS
CHRISTIE HILL I'M STANDING IN
FOR Dr. PRATT THIS MORNING.
I'M THE DEPUTY DIRECTOR AT THE
NATIONAL INSTITUTE ON DISABILITY
AND INDEPENDENT LIVING AND
RESEARCH.
>>Chair Dr. Perreault: LINDEN
JOSEPH.
>>GOOD MORNING.
MY NAME IS LINDEN JOSEPH AND I'M
A PROGRAM OFFICER AT THE
NATIONAL INSTITUTE ON AGING.
>>Chair Dr. Perreault: RALPH,
YOU ALREADY HEARD FROM.
>>YES, I'M HERE I'M THE
EXECUTIVE SECRETARY FOR THIS
BOARD AND ALSO THE DEPUTY
DIRECTOR OF THE NATIONAL CENTER
FOR MEDICAL REHABILITATION
RESEARCH.
GOOD MORNING, I'M LANA FROM THE
NATIONAL INSTITUTE OF DEAFNESS
AND OTHER COMMUNICATION
DISORDERS.
HAPPY TO BE WITH YOU.
>>CHRISTOPHER STEEL.
>>
>>HI, I'M ED AND I'M THE CHIEF
OF THE TECHNICAL ASSISTANCE IN
THE REHABILITATION SERVICES
ADMINISTRATION IN THE OFFICE OF
SPECIAL LIFE AND REHABILITATIVE
SERVICES AT THE DEPARTMENT OF
EDUCATION.
>>CHUCK.
>>GREAT.
THANK YOU TO ALL OF US.
I'D LIKE TO NOW IS FOR APPROVAL
OF THE MINUTES.
COULD HE HAVE MOTION TO APPROVE
THE MINUTES OF LAST -- I GUESS I
SHOULD ASK, DOES ANYONE HAVE ANY
ADDITIONS OR CHANGES THAT THEY
REQUEST TO BE MADE TO THE LAST
MINUTES?
IF NOT, CAN CAN I ASK FOR A
MOTION I TO APPROVE THE MINUTES?
>>SO MOVED.
>>Chair Dr. Perreault: AND A
SECOND?
>>I SECOND.
>>GREAT.
THANK YOUMENT AALL IN FAVOR RAI.
>>ANY OPPOSED?
GREAT.
THE MEETING MINUTES ARE
APPROVED.
THANK YOU, EVERYONE.
SO WITH THAT I'D LIKE TO
INTRODUCE OUR FIRST PREN TAG FON
FOR TODAY.
Dr. BIANCHI WILL GIVE HER
PRESENTATION.
>>Dr. Bianchi: THANK YOU SO
MUCH, Dr. PER A LOT.
PERRAULT.
IF SOMEONE CAN BRING UP THE
SLIDES.
AND JUST FOR THE NEW PEOPLE,
NABMRR IS A CENTER WITHIN THE
NATIONAL INSTITUTE OF CHILD
HEALTH AND HUMAN DEVELOPMENT.
AND WE FREQUENTLY TALK ABOUT OUR
POPULATIONS, WHICH INCLUDE
CHILDREN, PEOPLE OF REPRODUCTIVE
AGE AND PEOPLE WITH INTELLECTUAL
AND PHYSICAL DISABILITIES.
SO, A LOT OF WHAT YOU ARE GOING
TO HEAR FROM ME IN MY
PRESENTATION THIS MORNING, IS
REALLY THE 30,000-FOOT OVERVIEW
OF HOW NICHD IS CONTRIBUTING TO
MULTIPLE PROJECTS ACROSS THE NIH
AND JUST SOME, AGAIN, HIGH-LEVEL
CHANGES THAT ARE GOING ON, ET
CETERA, THEN Dr. CRUZ WILL
GIVE YOU A FOCUSED PRESENTATION
ON EXACTLY WHAT IS HAPPENING
WITH NCMRR, AND WE CAN BOTH
ANSWER QUESTIONS.
SO TODAY I'M GOING TO SPEAK
ABOUT THE 60th ANNIVERSARY
SYMPOSIUM THAT WE HELD.
I'M GOING TO GIVE YOU AN UPDATE
ON THE BUDGET, NOT THAT THERE'S
MUCH NEWS THERE BUT I'LL TELL
WHAT YOU WE KNOW.
AND THEN, SOME OF THE
INITIATIVES IN WHICH MULTIPLE
STAFF MEMBERS FROM NICHD ARE
PARTICIPATED.
THERE'S BEEN A TREND TOWARDS
THESE NCCIH WIDE INITIATIVES AND
IT REALLY IS AN OPPORTUNITY FOR
US TO ADVOCATE FOR PARTICIPATION
AND ENGAGEMENT THAT INCLUDES OUR
POPULATIONS.
THEN, WE THOUGHT WE WOULD
HIGHLIGHT SOME OF THE RECENT
OPPORTUNITIES AND FIREARMS AND
VIOLENCE RESEARCH BECAUSE
CLEARLY, UNFORTUNATELY IT LEADS
TO PHYSICAL DISABILITIES AND
INTELLECTUAL DISABILITIES.
THERE WAS A REQUEST TO HEAR
ABOUT THE RECOVERY INITIATIVE
AND LONG COVID, BECAUSE THAT'S
OF INTEREST TO MANY OF YOU AND
FINISHING UP WITH STAFF UPDATES.
THAT'S OUR ROADMAP, NEXT LIED,
PLEASE.
SO FOR THOSE OF YOU WHO DIDN'T
HAVE RAY CHANCE TO WATCH OUR
60th ANNIVERSARY CELEBRATION,
IT WAS HELD ON OCTOBER 17th,
WHICH WAS OUR ACTUAL 60t
60th ANNIVERSARY.
THE THEME WAS HEALTHY
PREGNANCIES, HEALTHY CHILDREN,
HEALTHY AND OPTIMAL LIVES, WHICH
IS OUR VISION STATEMENT AND THE
VIDEO CAST IS PUBLICLY AVAILABLE
IF YOU JUST TYPE IN THAT WEBSITE
YOU CAN WATCH IT AND YOU CAN
FAST FORWARD.
THERE ARE NO COMMERCIALS BUT YOU
CAN CAST FORWARD TO PARTS YOU
WOULD ENJOY AND I HEALEY
RECOMMEND THAT YOU HEAR THE
COMMENTS MADE BY TIM SCHRIBER,
THE SON OF EUNICE KENNEDY
SCHRIBER AND PASSION ABOUT
DISABILITIES.
ALSO, THERE WAS JUST ANNA MAZE
BE INTERVIEW THAT THERESA DID
WITH JUDY HUMAN AND I WOULD
RECOMMEND WATCHING AS MUCH AS
YOU CAN CAN OF THE WHOLE THING
BUT THOSE TWO PARTICULAR
SECTIONS WOULD BE OF INTEREST TO
YOU AND WE ALSO ARE STILL
MAINTAINING OUR 60t
60th ANNIVERSARY WEB PAGE
WHICH IS A SOURCE OF MILESTONES
IN OUR HISTORY.
COULD EVERYBODY MUTE, IF YOU ARE
NOT SPEAKING.
IT'S A LITTLE BIT DISTRACTING.
THANK YOU.
AND THEN, WE HAVE A LITTLE BIT
ABOUT OUR FUTURE RESEARCH
DIRECTIONS AS WELL AS PEOPLE WHO
ARE PART OF THE NICHD,
COLLEAGUES, WHO WE HAVE PROFILES
WHO PEOPLE HELPING US TO ACHIEVE
OUR MISSION.
NEXT SLIDE, PLEASE.
I WISH I COULD SAY MORE ABOUT
THE BUDGET.
I BELIEVE, EVEN AT OUR LAST
MEETING IN JUNE, SHOWED PRETTY
MUCH THE IDENTICAL SLIDE BECAUSE
ALL WE HAD AT THAT TIME WAS THE
PRESIDENT'S PROPOSED BUDGET.
CONGRESS DECIDE NOT TO MAKE
DECISIONS UNTIL AFTER THE
MIDTERM ELECTIONS.
WE ARE ALWAYS SORT OF ONE STEP
AHEAD OF THEM IN THAT WE PUT
TOGETHER A JUSTICE CONGRESSIONAL
DOCUMENT THAT TALKS ABOUT WHAT
WE WANT TO FUND AND PROGRAM PRE
FILES AND HI LIGHTS AND WHY WE
DESERVE AN INCREASE IN OUR
BUDGET.
WE'VE DONE IT FOR FISCAL YEAR
'24 BUT WE'RE WELL INTO FISCAL
YEAR '23 NOW AND WE D DON'T HAVA
BUDGET.
WE HAVE THE CONTINUING
RESOLUTION AND CONGRESS MADE
THAT DECEMBER 16th.
THERE'S NOT BEEN A LOT
HAPPENING.
WHAT WE KNOW, AS OF LAST WEEK,
IS THAT MEMBERS OF CONGRESS HAVE
AGREED ON A TOP LINE BUDGET FOR
THE NIH AND BUDGET
APPROPRIATIONS PACKAGE.
IT'S IN DOUBT THEY WILL COMPLETE
THIS BY DECEMBER 16th.
SO WE JUST GO WEEK BY WEEK.
THEY'LL THEN PROBABLY KICK THE
CAN DOWN THE ROAD AND SET
ANOTHER DEADLINE, AND
POTENTIALLY THEY'LL WAIT UNTIL
THE NEXT CONGRESS IS SEATED AND
OF COURSE THEY'LL HAVE SOMEWHAT
DIFFERENT PRIORITIES SO WE'RE
HOPING THAT SOME OF THE NIH
CHAMPIONS, WHO ARE RETIRING THIS
YEAR WILL HAVE THEIR SAY AND ARE
ABLE TO GO OUT ON A HIGH NOTE
AND ADVOCATE FOR THE NIH BEFORE
THERE ARE CHANGES IN THE VARIOUS
COMMITTEES.
SOMETHING I DIDN'T REALIZE UNTIL
I STARTED TO WORK AT THE NIH
BECAUSE I WAS AN EXTRAMURAL
INVESTIGATOR FUNDED BY NICHD
BEFORE I TOOK THIS POSITION,
WHEN THERE'S A LATE
APPROPRIATION, IT MEANS THAT THE
DEADLINES FOR FUNDING
ANNOUNCEMENTS ALL GET SHORTER.
FOR EXAMPLE, THIS YEAR IN MARCH,
WE GOT THE BUDGET IN MARCH, WE
WERE HIGHLY CONSERVATIVE IN
TERMS OF FUNDING WELL-SCORED
APPLICATIONS BUT YOU CAN CAN'T
SPEND MONEY YOU DON'T HAVE.
YOU HAVE TO WAIT UNTIL YOU GET A
BUDGET AND THERE'S A FLURRY OF
ACTIVITIES THAT MEANS OUR SHOULD
HAVE HAVE TO WORK EXTRA HARD TO
GET THE MONEY OUT THE DOOR BY
DEPARTMENT 30th OF THAT FISCAL
YEAR.
THERE'S A CHALLENGE WHEN THERE
ARE NEW INITIATIVES THAT ARE
PART OF THAT FISCAL YEAR SO IT'S
AN AREA WHERE WHATEVER IS GOING
ON POLITICALLY, DIRECTLY AFFECTS
THE WORK WE DO.
SO IF YOU ARE INVESTIGATORS AND
YOU ARE WONDERING WHY A GRANT
WITH AN 8% SHOULD HAVE BEEN
FUNDED THIS IS THE REASON WHY.
IT DOESN'T BEEN FUNDED BECAUSE
WE DO A BUDGET YET.
WE DO THIS CONSERVATIVE
CONTINUING RESOLUTION, WHERE WE
USE THE BUDGET FROM THE PREVIOUS
YEAR, FISCAL YEAR '22 SO
ESTIMATE WHAT IS GOING TO HAPPEN
THIS YEAR.
NEXT SLIDE, PLEASE.
SPEAKING OF CONGRESS, WE'VE BEEN
VERY ACTIVE IN MEETING WITH
MEMBERS OF CONGRESS SO BACK IN
SEPTEMBER, IF YOU LOCK ALL THE
WAY TO THE RIGHT IN THIS
PICTURE, THAT IS SENATOR JERRY
MORAN FROM KANSAS WHO IS A
CO-CHAIR OF THE DOWN SYNDROME
CAUCUS.
WE WERE ASKED TO MEET WITH HIM,
WE WERE ACTUALLY IN ONE OF THE
VERY FANCY SENATE ROOMS.
IT WAS FUN BEING ON THE OTHER
SIDE OF THE BENCH.
AND WE WERE ASKED TO GIVE AN
UPDATE ON THE INCLUDE INITIATIVE
IN WHICH NICHD PLAYS A MAJOR
ROLE WHERE ONE OF THE
CO-CHAIRING INSTITUTES OF THE
INITIATIVE AND IT STANDS FOR
INVESTIGATION OF CO -- THIS WAS
A NEW EXPERIENCE FOR ME BECAUSE
WHEN YOU TESTIFY, AT THE
APPROPRIATIONS HEARINGS, YOU
BASICALLY GET TWO MINUTES TO
MAKE YOUR CASE.
HERE, WE HAD AN HOUR.
IF YOU LOOK AT THE GENTLEMAN TO
THE LEFT OF ME, THAT IS Mr.
FRANK STEVENS, WHO WAS A
SELF-ADVOCATE WITH DOWN SYNDROME
AND TWO REPRESENTATIVES FROM THE
SEA FOUNDATION, THE UNIVERSITY
OF COLORADO WHO ARE MAJOR
RECIPIENTS OF NIH FUNDING.
IT WAS A VERY PRODUCTIVE MEETING
AND REALLY ENJOYABLE AND SENATOR
MORAN WAS VERY POSITIVE AS WELL.
HE SAID THAT, IT'S A RARE
OCCASION FOR HIM TO SEE THE
INCREDIBLY POSITIVE IMPACT OF
FUNDING AND WHAT FUNDING CAN DO
FOR RESEARCH INITIATIVES AND HOW
THOSE RESEARCH INITIATIVES CAN
CHANGE PEOPLE'S LIVES WHAT YOU
DON'T SEE ARE MEMBERS OF VARIOUS
DOWN SYNDROME ADVOCACY GROUPS
FROM ACROSS COUNTRY SO THAT WAS
A VERY POSITIVE HOUR WE SPENT
WITH HIM.
THERE'S ALSO GREAT INTEREST IN
CONGRESS ABOUT MEDICATIONS TAKEN
BY PREGNANT AND LACTATING WOMEN.
THE PREGLAC TASK FORCE THAT
NICHD LED IN 2017 AND 2018, THE
SENATE HELPED STAFF AS WELL AS
MEMBERS OF CONGRESS ARE QUITE
INTERESTED IN HOW WE CAN TO MORE
TO LEARN MORE ABOUT HOW
MEDICATIONS TAKEN BY PREGNANT
AND LACTATING WOMEN, EFFECT
THEIR HEALTH.
LASTLY, TOMORROW, WE'RE MEETING
WITH REPRESENTATIVE LAUREN
UNDERWOOD WHO IS THE CHAP YUN
FOR BLACK MATERNAL HEALTH.
SHE CO-CHAIRS THE BLACK MATERNAL
HEALTH CAUCUS AND SHE WAS THE
DRIVING FORCE HYPED GETTING
$30 MILLION TO OUR FISCAL
'22 BUDGET TO IMPROVE MATERNAL
HEALTH.
SPEAKING OF IMPROVE, THIS AGAIN
IS A TRANS NIH INITIATIVE THAT
IS FOCUSED ON REDUCING CAUSES
AND IMPROVING HEALTH FOR WOMEN
BEFORE, DURING AND AFTER
DELIVERY WITH AN EMPHASIS ON
HEALTH DISPARITIES AND
DISPROPORTIONATELY EFFECTED
POPULATIONS UP AND ALASKA NATIVE
WOMEN OR BIRTHING PEOPLE
DEPENDING ON THE TERM THAT YOU
PREFER.
>>WE HAD $30 MILLION TO SPEND
BEFORE SEPTEMBER 30th AND IT'S
GREAT CREDIT TO THE STAFF
INVOLVED IN SIX DIFFERENT
COMPONENTS OF IMPROVE
INITIATIVE.
THERE WAS AN 'EM PHYSICIAN ON
INFRASTRUCTURE AND COMMUNITY
ORGANIZATIONS AND BECAUSE THERE
ARE SO MANY TO ACCELERATE
TECHNOLOGY AND IMPROVE MATERNAL
HEALTH FOR PEOPLE WHO DON'T HAVE
DIRECT ACCESS TO OBSTETRICALLY
TRAINED PERSON AGAIN, COMMUNITY
FOCUSED IMPLEMENTATION AND BASED
MA PERSONAL HEALTH INTER FENCES
AND THERE'S A CONNECTATHON
ESTABLISHING A LONGITUDINAL
HEALTH RECORD FOR THE PREGNANT
PERSON AND CURRENTLY WE HAVE THE
PROBLEM THAT THE OBSTETRICAL
RECORD OFTEN IS QUITE SEPARATE
FROM THE PREGNANT PERSONS HEALTH
RECORD EITHER BEFORE OR AFTER
PREGNANCY AND SO TRYING TO UNIFY
THAT INFORMATION TO BOTH ADDRESS
RISK FACT OR FOR COMPLICATIONS
DURING PREGNANCY OR SIMILARLY
HAVING INTERNISTS BE AWARE OF
RECENT PREGNANCY TO BE ON THE
LOOK OUT FOR THINGS LIKE CARDIO
HIGH ON THEE AND THERE'S A NEED
TO LINK AN ELECTRONIC HEALTH
RECORD ON THE PORT WITH THE MOTD
TO LOOK AT EXPOSURES THE BABY
MAY HAVE HAD DURING PREGNANCY.
AND WE ALSO WERE ABLE TO FUND A
NUMBER OF GRANTS THAT DIDN'T
QUITE MAKE PAYLINES AT THEIR
INDIVIDUAL INSTITUTES THAT WERE
FOCUSED ON DISSEMINATION AND
IMPLEMENTATION RESEARCH.
AND ALL OF THESE KIND OF INITIAL
OPPORTUNITIES ARE MEANT TO
PROVIDE.
>>Tara: THAT WILL THEN BE USED
IN THE MATERNAL HEALTH CENTERS
OF EXCELLENCE WHICH IS THE MAJOR
FOCUS OF OUR FUNDING THIS YEAR.
NEXT SLIDE, PLEASE.
AND IT'S VERY IMPORTANT THAT WE
INCLUDE WOMEN OR PREGNANT PEOPLE
WITH DISABILITIES IN THIS OFFER
ALL INITIATIVE AS WELL AS WE
HAVE SEPARATE FUNDING AT NICHD
OR NOTICE OF SPECIAL INTEREST,
IN THAT, WE WANT TO INTERSECT IN
AREAS WHERE WE'RE UNIQUELY
CAPABLE SO WE HAVE FUNDED
PORTFOLIO ON REPRODUCTIVE HEALTH
AND WE ALSO OBVIOUSLY HAVE A
FUNDED PORTFOLIO ON PEOPLE WITH
DISABILITIES AND IT IS KNOWN
THAT PEOPLE OF RO REPRODUCTIVE E
WHO HAVE PHYSICAL DISABILITIES,
DO NOT GET THE APPROPRIATE CARE,
WHETHER IT'S PRECONCEPTION,
PREGNANCY, OR POSTPARTUM.
WE KNOW THAT, FOR EXAMPLE, WOMEN
WITH DISABILITIES, WHO WERE
PREGNANT DURING THE PANDEMIC,
DIDN'T EVEN GET THE OPPORTUNITY
TO GET VACCINATED.
SO THE GOAL OF THIS NO SEE IS
REDUCE BARRIERS IN MEANINGFUL
REPRODUCTIVE HEALTH, PREGNANCY
AND PARENTING EXPERIENCING AMONG
WOMEN WITH DISABILITIES AND
IMPROVE OVER ALL OUTCOMES FOR
BOTH THE MOTHER AND THE BABY.
AND THE NOSI ENCOURAGED RESEARCH
TO ESTABLISH A STRONG
EVIDENCE-BASE FOR INTERVENTIONS
AND CLINICAL PRACTICE GUIDELINES
THAT WILL SUPPORT HEALTHCARE
ACCESS AND INCLUSION, RELEVANT,
ASSIST DEVICE AND TECHNOLOGY
DEVELOPMENT AS WELL AS
ENVIRONMENTAL MODIFICATIONS.
SO, PLEASE, WRITE DOWN THIS
OPPORTUNITY.
NEXT SLIDE, PLEASE.
ANOTHER AREA WHERE WE ARE
PARTICIPATING NIH WIDE, IS THE
STRATEGIC PLAN FOR NIH NUTRITION
RESEARCH.
THE UNIFYING VISION IS PRECISION
NUTRITION AND OUR STAFF
PARTICIPATED ACTIVELY IN THE
CREATION OF THIS STRATEGIC PLAN.
PARTICULARLY IN THE ROLE OF
NUTRITION AND THE MICROBIOME AND
THE DEVELOPMENT ORIGINS OF
HEALTH AND DISEASE AND STAFF
FROM NICHD CO-CHAIR THE CO T COE
IMPLEMENTATION WORKING GROUP AND
WE'RE INVOLVED IN NUTRITION TO
PRECISION HEALTH, WHICH IS
POWERED BY THE ALL OF US
RESEARCH PROGRAM.
THIS IS A COMMON-FUND
OPPORTUNITY BUT OUR INSTITUTE IS
MANAGING THE GRANTS AND THERE
WAS A WORKSHOP HELD IN SEPTEMBER
ON MALNUTRITION IN CLINICAL
SETTINGS, RESEARCH GAPS AND
OPPORTUNITIES AND AGAIN, ANY
TIME OUR STAFF ARE INVOLVED, WE
ARE ADVOCATING FOR OUR THREE
CORE GROUPS OF POPULATIONS.
NEXT SLIDE, PLEASE.
AND ANOTHER AREA THAT WE ARE
VERY INVOLVED IN, IS ON CLIMATE
CHANGE AND HUMAN HEALTH.
SO WHEREAS, WE WERE VERY
FORTUNATE, THE PRESIDENT'S
BUDGET ASKED FOR $30 MILLION
FROM MATERNAL HEALTH AND WE GOT
IT, THE PRESIDENT'S BUDGET ASKED
FOR $100 MILLION FOR CLIMATE
CHANGE AND HUMAN HEALTH RESEARCH
AND THEY IT NOT RECEIVE IT.
SO, IT WAS SUPPOSED TO BE IN
NIEHS AND IT WAS NOT
APPROPRIATED.
DESPITE THAT, WE ARE EXTREMELY
CONCERNED ABOUT CLIMATE CHANGE
AND ITS EFFECTS ON HUMAN HEALTH
AND THE GROUP ARE SEVEN ARE PART
AN EXECUTIVE COMMITTEE THAT IS
DEVELOPING A CLIMATE CHANGE IN
HUMAN HEALTH STRATEGY YOU CAN
SEE AS MYSELF, Dr. GIBBONS
FROM NHLBI, Dr. GLASS FROM THE
FOALING FOGERTY AND Dr.
PEREZ-STABLE FROM MINORITY
HEALTH AND HEALTH DISPARITIES,
Dr. AND Dr. ZENK THE
DIRECTOR OF THE NATIONAL
INSTITUTE OF NURSING RESEARCH.
AND WE MEET REGULAR LOW, MONTHLY
AND WE HAVE CREATED PRIORITY
AREAS OF SCIENCE.
EACH INSTITUTE HAS CONTRIBUTED
TO A SEED FUND SO WE CAN START
WITH THESE PROJECTS.
IT'S DATA INTEGRATION, AND
BEHAVIORAL AND SOCIAL SCIENCES
RESEARCH.
SO, AGAIN, I FEEL IT'S MORE THAN
WORTH MY TIME TO BE ABLE TO
ADVOCATE FOR OUR POPULATIONS.
NOT ONLY PEOPLE WITH HEALTH
DISPARITIES, BUT PEOPLE AT
DIFFERENT LIFE STAGES AND I HAVE
TO SAY THAT IT WAS WORTH MY TIME
BECAUSE SOME OF THE INITIAL
GRAPHICS DID NOT INCLUDE PERSONS
WITH DISABILITIES AND DID NOT
INCLUDE PREGNANT PEOPLE OR
CHILDREN SO, I THINK IT'S ON
EVERYBODY'S RADAR SCREEN THESE
ARE ON GOING AREA OF FUNDING AND
WORE HOPING THAT IN FISCAL YEAR
'23 THERE WILL BE AND WILL ARE
NOTICES OF SPECIAL INTEREST IN
THE USE OF COMMON DATA ELEMENT
AND A WIDE VARIETY OF PROJECTS
THAT RELATE TO CLIMB AND HEALTH
AND TECHNOLOGIES AGAIN AND THE
LAST BULLET IS CLOSE SO I WOULD
SPEND TIME ON IT NEXT TIME.
WE THOUGHT WE WOULD SUPPORT
FIREARMS RESEARCH AND THIS IS
EXTREMELY IMPORTANT IT'S ONE OF
THE LEADING CAUSES OF INJURY AND
DEATH IN CHILDREN AND HOMICIDE
IS A LEADING CAUSE OF DEATH.
WE ARE AWARE THAT MORE RESEARCH
IS NEEDED TO PREVENT VIOLENCE
FROM FIREARMS.
SO WE'RE FUNDING A NUMBER OF
DIFFERENT OPPORTUNITIES,
COMMUNITY BASED INTERVENTIONS TO
PREVENT VIOLENCE, SOCIAL AND AK
A 'EM DID I A DEMIC LEADING TO Y
BEHAVE YEAR AND YOUTH.
SAFETY WITH GUN SAFETY EDUCATION
AND POPULATION STUDIES THAT
ANALYZE TRENDS IN GUN OWNERSHIP
ACCESS.
WE WERE AWARDED -- WE AWARDED
NEARLY $2.5 MILLION TO SUPPORT
RESEARCH TO UNDERSTAND AND
PREVENT FIREARMS VIOLENCE
MORTALITY AND I WROTE ABOUT IT
IN MY JULY BLOG.
IT'S AN INCREDIBLY IMPORTANT
AREA THAT INCREASINGLY CONGRESS
IS BEING BEGINNING TO RECOGNIZE.
OUR PARTNER IN THIS AREA IS THE
OFFICE OF BEHAVIORAL AND SOCIAL
SCIENCES IN THE OFFICE OF THE
NIH WITH NETWORK PROJECTS AND
THEY'RE LOOKING AT FUTURE AREAS.
IF THIS IS SOMETHING YOU ARE
INTERESTED IN, WE CAN CONNECT
YOU WITH THE APPROPRIATE PROGRAM
OFFICERS.
THERE WAS A REQUEST TO HEAR
ABOUT RECOVER.
THERE'S A LOT GOING ON AND
THERE'S NOT A LOT THAT WE CAN
SAY HAS COME TO A CONCLUSION.
THEY HAVE ENROLLED 10,000 PLUS 0
ADULTS.
THERE ARE 40 STUDIES GOING ON.
THERE ARE BIOMARKERS THAT ARE
BEING TESTED TO DETERMINE
WHETHER OR NOT THEY CAN PREDICT
MOST ACUTE SEQUELAE OF
SARS-CoV-2 INFECTION AND THEY
ARE LOOKING AT MORE THAN
60 MILLION ELECTRONIC HEALTH
RECORDS AND THE IDEA IS TO
UNDERSTAND THE CLINICAL
ENDPOINTS THAT CAN PREDICT LONG
COVID AND MONITOR IMPROVEMENT
FROM TREATMENT.
NEXT SLIDE, PLEASE.
SO THERE ARE CLINICAL TRIALS
THAT WILL HAPPEN IN THE FUTURE.
EACH TRIAL IS GOING TO TARGET A
SPECIFIC CLUSTER OF SYMPTOMS,
IDENTIFIED BY PATIENT ADVISORY
GROUPS AS BEING THE MOST
IMPACTFUL ON THEIR HEALTH OR
THEIR LIFESTYLES.
THESE TRIALS ARE LOOKING AT
VIRAL PERSISTENCE AND SOME
PEOPLE SAY THAT LONG COVID
REALLY RELATES TO THE FACT THAT
THERE'S STILL VIRUS IN THE BRYN,
FOR EXAMPLE.
AND AUTONOMIC DYSFUNCTION.
SO, YOU KNOW, IS THE VIRUS
CAUSING CHANGES IN THE ABILITY
TO REGULATE HEART RATE, BODY
TEMPERATURES, BREATHING,
DIGESTION IS CEASE SESSION.
WHY OR HOW IS LONG COVID
EFFECTING SLEEP.
PEOPLE DESCRIBE DIFFICULTIES,
LONG-TERM THINKING CLEAR LOW OR
BRYN FOG.
AND THEN THE OVER ALL FATIGUE.
SO PEOPLE TALK ABOUT JUST BEING
HEALTHY ADOLESCENTS OR HEALTHY
COLLEGE STUDENTS PRIOR TO THE
INFECTION NOW REPORT THAT THEY
CAN'T EXERCISE OR PARTICIPATE IN
SPORTS AT THE LEVELS THEY COULD
PREVIOUSLY.
SO, I TO WANT TO LEAVE SOME TIME
FOR QUESTIONS.
LET'S SEE HOW WE'RE DOING.
WE'RE DOING ACTUALLY AHEAD OF
SCHEDULE WHICH IS GOOD.
SO, WHO IS WHO AT THE NIH?
IT'S ALMOST A YEAR NOW SINCE
Dr. FRANCIS COLLINS STEPPED
DOWN AS THE NIH DIRECTOR, IT WAS
DECEMBER 19th, LAST YEAR.
HIS DEPUTY DIRECTOR Dr. LARRY
TABAK BECAME THE ACTING DIRECTOR
BUT THERE'S A TIME LIMIT ON HOW
LONG YOU CAN CAN BE THE ACTING
DIRECTOR SO YOU DON'T HAVE TA
TITLE ANYMORE, THERE'S NOW A NEW
TITLE AND HIS TITLE IS HE IS THE
PERSON PERFORMING THE DUTIES OF
THE NIH DIRECTOR.
THIS IS -- I DON'T KNOW, THIS IS
GOVERNMENT EASE, I DON'T KNOW
HOW TO DESCRIBE IT OTHERWISE.
FUNCTIONALLY, HE IS THE DISTRICT
OR OF NIH.
AT THE OR -- HE IS THE DIRECTOR.
THIS IS A POLITICAL APPOINTMENT,
IT'S A PRESIDENTIAL APPOINTMENT
SO EVEN IF SOMEONE WERE
APPOINTED TOMORROW, THEY ONLY
HAVE A GUARANTEED JOB UNTIL THE
END OF THE JOE BIDEN
ADMINISTRATION, WHEN THAT MAY
BE.
THIS IS WHERE THE OUTCOME OF THE
MIDTERM ELECTIONS EFFECTED NEXT
NIH DIRECTOR BAYS THE SENATE HAS
TO CONFIRM THAT PERSON AND WE
WERE ORIGINALLY TOLD THAT NO
CANDIDATES WOULD BE EXPECTED TO
BE NAMED UNTIL THE END OF THIS
CALENDER YEAR AND FROM WHAT WE
CAN TELL THERE'S BEEN NO ACTION
ON THAT FRONT SO WE DON'T KNOW
WHAT IS GOING ON AND DR. TABAK
IS DOING A FANTASTIC JOB.
HE IS HIGHLY KNOWLEDGEABLE AND
EVERYTHING IS MOVING ALONG AS IT
SHOULD BUT I THINK HE WOULD LIKE
TO STEP DOWN AT SOME POINT.
WE ALSO HAVE SOME NEW ADDITIONS.
Dr. MONICA BERTINOLI WAS
APPOINTED AT THE CONTRACT OF THT
DECEMBER.
Dr. BERTAGNOLLI IS COMING FROM
AND SHE'S AT NIH BUT SHE CAME
FROM HARVARD MEDICAL SCHOOL
WHERE SHE WAS A SURGEON AND
MEMBER OF THE SARCOMA DISEASE
CENTER AT DANA FARBER AND SHE'S
TAKEN THE LEAD ON PRESIDENT JOE
BIDEN'S CANCER MOONSHOT
INITIATIVE AND SHE'S ALREADY
BEEN FILING AROUND THE COUNTRY
WITH THE FIRST LADY, I DON'T
KNOW IF IT WAS AIR FORCE 1 OR
AIR FORCE 2 BUT SHE'S BEEN ON A
LOT OF HIGH-PROFILE TRIPS.
THE GO AHEAD GOOD NEWS FOR US,S
INTERESTED IN PEDIATRIC CANCERS
AND HAS REACH OUT TO US.
AND ACTUALLY, I FORGOT THAT
SINCE WE -- COULD YOU GO BACK
FOR A MOMENT.
SINCE WE MADE UP THESE SLIDES,
THERE'S BEEN ANOTHER NIH
DIRECTOR NAMED SO THE DIRECTOR
OF NCATS HAS BEEN NAMED AND THAT
IS Dr. JOANNIE -- I'M BLANKING
ON HER LAST NAME.
RUTTER.
I KNOW HER WELL I'M HAVING A
MOMENT OF BRAIN FREEZE.
SHE'S BEEN APPOINTED AS THE
PERMANENT DIRECTOR OF NCATS SO
WE'RE QUITE HAPPY THAT WE'RE
MAINTAINING A LEVEL OF ABOUT 10
OR 11 FEMALE IC DIRECTOR AROUND
THE TABLE OF THE TOTAL OF 27.
INTEREST SARAH VAN DRESE IS
JOINING US FINALLY AS A DISTRICT
OR OF THE PEDIATRIC FOR ALL THE
OF US PROGRAM.
THE ALL OF US PROGRAM HAS THE
THEY'VE BEEN ENROLLING PERSONS I
THINK SINCE 2017 AND NOT ONE
CHILD HAS BEEN ENROLLED YET SO
FINALLY, SHE'S A FORMER
PROFESSOR OF PEDIATRICS AND
MEDICINE AT VANDERBILT AND SHE'S
ALSO AN NICHD GRANTEE.
SHE LED THE VANDER AS A RESULT
CVANDERBILT SO WEVERY EXCITED TE
WILL BE MEETING HER SOON AND
CAN'T WAIT FOR THE DAY UNTIL WE
BEGIN ENROLLING CHILDREN.
LASTLY, WE ARE HIRING A DIRECTOR
IN THE EXTRAMURAL DIVISION AND
LOOKING FOR A DEPUTY DIRECTORRER
IN EXTRAMURAL ACTIVITIES AND WE
HAVE EXTRAMURAL BRANCH CHIEF
POSITIONS AND WE HAVE MULTIPLE
OPPORTUNITIES FOR SCIENTIFIC
REVIEW OFFICERS AND PROGRAM
OFFICERS AND PROGRAM ANNALISTS
AND LOTS OF TRAINEE AND FELLOW
FELLOWSHIP OPPORTUNITIES.
AT THE PRESENT TIME, CAN YOU GO
TO THE WEBSITE HERE WW
WWW.NICHD.NIH.GOV ABOUT/JOBS AND
YOU CAN CREATE A USA.GOV JOBS
PROFILE AND SAVE IT AND THAT WAY
WHEN THERE ARE OPPORTUNITIES
THAT COME UP, WHICH ALWAYS HAVE
THESE VERY, VERY SHORT TIME
LINES, YOU WITH JUST HIT SEND.
AND MANY PEOPLE DON'T KNOW THAT.
WE HAVE DOCUMENTS TO TAKE YOU
HOW TO THINK LIKE A GOVERNMENT
OFFICIAL.
IT'S THE FIRST PERSON TO SEE IF
YOU ARE QUALIFIED OR NOT.
IF YOU HAVE ANY INTEREST IN
WORKING FOR OUR TEAM, WE SUGGEST
THAT YOU REACH OUT TO EITHER
Dr. NITKIN OR Dr. CRUZ AND
THEY CAN REFER YOU TO THE MOST
APPROPRIATE PERSON AND WE'RE
ALWAYS LOOKING FORGET POEM TO BE
MEMBERS OF OUR TEAM.
FOR GREAT PEOPLE
TO BE MEMBERS OF OUR TEAM.
THANK YOU FOR OUR ATTENTION.
SORRY FOR MOMENTARY BRAIN
FREEZE.
AND I'M HAPPY TO ANSWER
QUESTIONS.
>>Chair Dr. Perreault: GREAT,
THANK YOU, VERY MUCH.
DOES ANYONE HAVE QUESTIONS?
YOU MENTIONED SOME OF THE
CONGRESSIONAL PREVIOUSINGS,
WHICH ARE INTERESTING AND SOUNDS
POSITIVE, WHICH WAS TERRIFIC.
CAN YOU TELL US ABOUT THE
BRIEFING WITH SENATOR MORAN AND
GIVE US SOME IN SIGHT TO THE
NEXT STEPS THERE?
>>Dr. Bianchi: YES, SO, THE
INCLUDE INITIATIVE, SO IT'S
INTERESTING, BECAUSE I PRIOR TO
COMING TO NIH, I, PART OF MY
LABORATORY WAS DOING RESEARCH
AND IT STILL IS AT NIH BUT IT
WAS CHALLENGING FOR ALL PEOPLE
DOING RESEARCH IN DOWN SYNDROME,
BECAUSE IT WAS VERY LITTLE MONEY
TARGETED TOWARDS RESEARCH AND
DOWN SYNDROME.
AND IT WAS Mr. STEVENS WHO
TESTIFIED IN CONGRESS IN 2017
AND SO IMPRESSED THAT THE
CO-CHAIRS OF THE HELP
SUBCOMMITTEE, THE HOUSE
APPROPRIATIONS COMMITTEE THAT
THE FUNDING DOUBLED AND HAS
INCREASED EVERY YEAR WITH THE
MEASURABLE EFFECTS ON THE
RESEARCH.
IT WAS AN OPPORTUNITY TO UPDATE
SENATOR MORAN ABOUT WHAT WAS THE
IMPACT OF THAT FUNDING FROM THE
SENATE PERSPECTIVE.
AND WE'RE HOPING THE HOUSE AND
SENATE WILL CONTINUE TO INCLUDE
THAT FUNDING SO, REALLY THE GOAL
WAS TO SAY DON'T CUT BACK ON THE
FUNDING BECAUSE YOU MADE THIS
INITIAL INVESTMENT, THERE'S BEEN
A TREMENDOUS IMPACT AND INCLUDE
IS NOT ONLY FOCUSED ON PEOPLE
WITH DOWN SYNDROME IT'S LOOKING
AT PEOPLE WHO HAVE DOWN SYNDROME
AND WHY ARE THEY PREDISPOSED TO
CERTAIN CONDITIONS LIKE
ALZHEIMER'S DISEASE BUT THEY'RE
SIMULTANEOUSLY PROTECTED FROM
OTHER CONDITIONS LIKE MIO
CARDIAL UNFACTION AND LIKE
BREAST CANCER OR OTHER SOLID
TUMORS.
IT'S A BENEFIT FOR EVERYONE, AND
IT'S ALSO AIMED AT INCLUDING
PEOPLE WITH DOWN SYNDROME IN ALL
SORTS OF CLINICAL TRIALS SO THAT
IS SOMETHING THAT WE CAN A REPLY
TO PEOPLE WITH ALL KINDS OF
DISABILITIES.
WHY ARE WE EX CLOUDING PEOPLE
WITH DISABILITIES IN CLINICAL
TRIALS?
WE SHOULD BE INCLUDING THEM SO
THE NAME INCLUDE IS ACTUALLY HAS
DOUBLE MEANING.
BUT THE EXPECTATION IS OR WAS
THAT WE WOULD CHARGE SENATOR
MORAN WITH BEING AN ADVOCATE TO
KEEP UP THE FUNDING.
I MEAN, WE CAN'T COME OUT DIRECT
LOW AND SAY WE WANT YOU TO FUND
BUT BUT WE CAN SHOW WHAT WOVE
DONE WITH THE MONEY AND
HOPEFULLY INSPIRE HIM.
HE GOT THE MESSAGE AND THAT WAS
GREAT.
>>JUST ONE MORE POLL UP.
HOW FREQUENT LOW ARE YOU ABLE TO
HAVE THESE?
THIS WAS A LONG SESSION AND
RARE.
HOW FREQUENTLY ARE YOU ABLE TO
GET THEM WITH SENATORS?
>>WELL, ANOTHER THING IS WE
CAN'T REACH OUT.
THIS IS SOMETHING THAT YOUR
COMMUNITY CAN DO.
SO, WE ARE HAPPY TO RESPOND WHEN
THERE'S A REQUEST IT'S UP TO THE
MEMBERS' SCHEDULE SO WE'RE
MEETING WITH REPRESENTATIVE
UNDER WOOD TOMORROW AND I THINK
SCHEDULED FOR HALF AN HOUR AND
IT'S SOMETHING IN HER OFFICE AND
OFTEN TIMES, IT WILL GO LONGER
BECAUSE THEY'RE INTERESTED AND
THEY WANT TO KNOW MORE BUT IT'S
REALLY THE COMMUNITY, THE
ADVOCATES OR THAT THE EXPERTS
WHO REACH OUT TO EITHER THEIR
OWN REPRESENTATIVES OR
REPRESENTATIVES WHO ARE THE
CHAMPIONS OF A PARTICULAR TOPIC,
YOU KNOW, FOR EXAMPLE, TAMMY
DUCKWORTH WOULD BE A GREAT
PERSON FOR US TO GET TO KNOW.
WE HAVE NOT HAD ANY CONTACT WITH
HER DIRECTLY.
BUT SHE IS SOMEONE WHO EMBODIES
A LOT OF THE THEMES OF OUR
INSTITUTES.
SO, IT'S REALLY UP TO ALL OF
YOU.
>>IT'S HELPFUL.
RALPH, YOU HAD A QUESTION.
>>I WANTED TO EXTEND THE
BACKGROUND FURTHER.
COULD YOU TALK A LITTLE BIT
ABOUT THE TYPES OF CONGRESSIONAL
INTEREST THAT THE STRANDS, THE
BACKGROUNDS, THE TYPES OF
QUESTIONS THAT COME IN THE AREA
OF ROW HABITATION OR
DISABILITIES OR SUPPORTING OUR
PATIENT POPULATIONS AND SOME OF
THE STRANDS THAT HAVE APPROACHED
YOU?
>>Dr. Bianchi: SO, QUITE
HONESTLY, THERE'S PROBABLY
BEEN -- SO, FIRST OF ALL, ONLY A
LIMITED NUMBER OF DISTRICTORS
ACDIRECTORSTESTIFY EACH YEAR.
THERE'S USUALLY SIX.
IT COMES AT THE REQUEST OF THE
MEMBERS WHETHER IT'S SENATE, OR
THE HOUSE.
THE HOUSE TENDS TO BE MORE
INTERESTED IN CHILDREN AND
PREGNANT PEOPLE, ALTHOUGH TWO OF
THE MEMBERS, WHO HAVE BEEN THE
BIGGEST CHAMPIONS,
REPRESENTATIVE ALLARD FROM
CALIFORNIA IS RETIRING AND
REPRESENTATIVE HERERA-BUTLER WAS
NOT RE-ELECTED.
QUITE HONESTLY, THERE HAVEN'T
BEEN A LOT OF QUESTIONS ON
REHABILITATION, AT LEAST IN THE
LIVE HEARINGS.
THERE'S BEEN MORE IN TERMS OF
QUESTIONS FOR THE RECORD.
I DON'T KNOW, MAYBE THERESA CAN
COMMENT ON QUESTIONS FOR THE
RECORD WHICH GIVE THE MEMBERS AN
OPPORTUNITY AFTER THE MEETING TO
IS QUESTIONS AND TYPICALLY THE
SENATE IS MORE INTERESTED IN
ADULT ISSUES OR MENTAL HEALTH
ISSUES AND THEY'RE BOTH HOUSES
ARE INTERESTED IN DRUG ABUSE,
FOR EXAMPLE.
BUT THERESA, QUESTIONS FOR THE
RECORD, BECAUSE I HAVE NOT BEEN
ASKED A LOT OF QUESTIONS
ABOUT - IF ANY, ABOUT REHABTATI.
>>WE'VE GOTTEN REQUESTS FOR
CONGRESS.
WE'VE GOTTEN ON SPINE A
SPINE A BIFF TA, SPINA BIFIDA D
CEREBRAL PALSY.
THIS SUMMER, UNITED SPINAL
HOSTED A ROLE ON CAPITOL HILL
WHERE MANY ADVOCATES WENT TO SEE
REPRESENTATIVE LONGVIN WHO IS
RETIRING BUT IS A SPINAL CORD
INJURY PERSON FROM THE STATE OF
CONNECTICUT, I BELIEVE, AND HE
IS BEEN A REPRESENTATIVE FOR 20
YEARS I THINK AND I WAS THERE
AND I WAS ABLE TO MOTEL WITH
MANY OF OUR CONSTITUENTS.
SO, WE WOULD BE HAPPY TO HAVE
MORE CONVERSATIONS, I THINK, IS
THE MESSAGE.
THANK YOU.
>>Dr. Bianchi: SO YOU CAN CAN
PLAY A ROLE, IF YOU'D LIKE TO.
>>Chair Dr. Perreault: THANK
YOU, THAT'S REALLY HELPFUL.
WE HAVE A QUESTION FROM
CONTRERAS-VIDAL.
>>I'D LIKE TO FOLLOW-UP ON YOUR
PARTICIPATION IN CONGRESS.
I HAD THE OPPORTUNITY TO
PARTICIPATE IN CONGRESSIONAL
OPEN HOUSE ON THE NATIONAL
INITIATIVE AND SO IT'S OPEN TO
THE PUBLIC AND WE WERE ABLE TO
BRING OUR RESEARCH TO D.C. AND
SHARE THAT WITH SOME MEMBERS OF
CONGRESS AND I THOUGHT IT WAS
REALLY A GREAT OPPORTUNITY FOR
THOSE OF US AS P.I.s TO TALK
TO WASHINGTON D.C. AND ALSO GET
SOME QUESTIONS DIRECTLY FROM
THEM.
AS I WONDERED WHETHER THAT'S
SOMETHING THAT CAN CAN BE DONE
HERE, OR MAYBE IT'S BEING DONE,
I JUST DON'T KNOW.
>>ANY COMMENTS FOR THAT.
AGAIN, WE CAN'T INITIATE IT BUT
YOU CAN AND YOUR ADVOCACY GROUPS
CAN CAN AND WE WOULD BE MORE
THAN HAPPY TO HARP AND SUPPORT
ANY GROUPS THAT ARE COMING IN
FRONT OF CONGRESS, MEMBERS OF
CONGRESS OR THEIR STAFF.
REMEMBER, THAT THEY AGAIN, THE
REASON WHY I WANT TO MENTION THE
STORY WITH SENATOR MORAN, IS HE
SEEMED VERY GENUINE IN HIS
COMMENTS THAT HERE IS A
BIPARTISAN AREA THAT THEY
EVERYONE VESTED MONEY WE TOLD
THEM STORIES WHAT WE DID WITH
THAT AND WE'LL TELL THEM
TOMORROW WITH REPRESENTATIVE
UNDERSTAND AND IF YOU THINK
ABOUT IT, THEY'RE GOING THROUGH
THE BUDGET AND IT'S A VERY
ABSTRACT EXERCISE AND WHEN YOU
BRING IN PEOPLE WHO ARE DIRECT
LOW EFFECTED, OR YOU TALK ABOUT
WHAT WE ACTUALLY DID IT'S A
REALLY FEEL-GOOD MOMENT FOR THEM
AND SO ANYTHING THAT CAN YOU DO
TO BRING RIGHT SEARCH IN FRONT
OF THE MEMBERS OR THEIR STAFF
AND THEIR STAFF CONTROL A LOT OF
WHAT IS GOING ON AND THEY'RE
FEEDING INFORMATION TO THEIR
MEMBERS AND I WANT PEOPLE TO
FEEL EMPOWERED AND HAVE THE
POSSIBILITY TO MAKE CHANGE THE
THING IS WE CANNOT LOBBY.
THAT IS NOT PART OF OUR JOB.
WE CAN SUPPORT YOU WHEN THERE'S
AN INVITATION OR SOMEONE IS
REACHING OUT TO US FOR
INFORMATION.
>>IF I MAY, FOLLOW-UP
INFORMATION, WHAT IS THE
RELATIONSHIP BETWEEN THE
INSTITUTE OR OP WHERE THEY'RE
TAKING BRAND NEW INITIATIVES?
>>SO, AGAIN, THEY'LL REACH OUT
TO US.
FIRST OF ALL, THE BEGINNING OF
THE JOE BIDEN ADMINISTRATION
THERE WAS A LOT OF
CROSS-FERTILIZATION WHERE STAFF
FROM NIH WENT DOWN TO STAFF THE
OSTP BECAUSE REMEMBER, THE OSTP
HAD A LOT OF VACANCIES AT THE
END OF THE PREVIOUS
ADMINISTRATION SO NIH WENT --
THEY WERE CALLING IT NIH SOUTH
AT SOME POINT.
SO, THEY WILL REACH OUT TO US.
I KNOW THAT FOR EXAMPLE, THEY IT
A WORKSHOP ON NEWBORN SEQUENCING
AND I SPOKE AT THAT.
BUT THAT WAS INITIATED BY THEM
AND SIMILARLY, IF THEY WANT TO
KNOW MORE ABOUT REHABILITATION
WE WOULD HARP IN THAT AND IT
WOULD BE THERESA AS THE EXPERT
OR SOMEONE FROM NCMRR.
>>THANK YOU, VERY MUCH.
>>Chair Dr. Perreault: PROFESS.
>>Dr. BIANCHI, THANK YOU FOR
THAT PRESENTATION AND A GOOD
PARTNER WE HAVE IN THE SENATOR
MORAN.
HE IS FROM THE STATE OF KANSAS
AND I HAVE MET AND DISCUSSED
WITH HIM, A GOOD NUMBER OF
TIMES, YOU ARE CORRECT, HE IS
GENUINELY INTERESTED IN RESEARCH
AND SCIENTIFIC RESEARCH, AND WAS
VERY IN THE COUNTRY RECENTLY AND
I THINK THAT HE IS SOMEONE THAT
WE CAN LEVERAGE ON THESE
INTERESTS OF THE GENUINE
INTEREST IN THIS AREA TO ADVANCE
A LOT OF THINGS WE WANT TO DO IF
YOU ARE GOING TO DO SOME SORT OF
PRESENTATION AND IF YOU THINK
IT'S HELPFUL FOR OUR STAFF TO
COME AND SUPPORT YOU, IT'S
SOMETHING WE CAN DO TO CONTINUE
TO ESTABLISH OUR RELATIONSHIP
WITH SENATOR MORAN.
SO MUCH OF THIS IS BUILDING AND
SOME SOD Dr. COLLINS WAS THE
BEST POLITICIAN IN WASHINGTON
BECAUSE HE HAD AND
I WAS ONE WHO INTERRUPTED YOU.
IT'S ALL ABOUT RELATIONSHIP
BUILDING AND LIKE YOU SAID
CORRECTLY, GET NO THE SEN OT
AS EFFECTIVE OF HOW WELL WE
DEVELOP THE RELATIONSHIP WITH
HIS STAFF BECAUSE THEY ARE THE
GATEWAY TO HIM AND THEY
BASICALLY ARE TERMING W TERM DEG
WHERE HE GOES, WHERE HE PRESENTS
AND THAT NETWORK IS IMPORTANT
AND ONE WE'RE CRUCIAL AND YOUR
SUGGESTION OF THE RESEARCH DAY
IS SOMETHING WE SHOULD WHY HAVE
AN INVITATION EXTENDED OUT TO
YOU.
>>Dr. Bianchi: GREAT, THANK
YOU.
>>Chair Dr. Perreault: SINCE
THIS IS A PUBLIC MEETING, AS YOU
FAVORGAVE UPDATES ABOUT INSTITU,
WE SHOULD REITERATE ABOUT THE
RETIREMENT.
THE WELL-DESERVED RETIREMENT OF
INTEREST TONY FAUCI.
FOR THE RECORD, I WANTED TO PUT
THAT OUT THERE.
>>Dr. Bianchi: SOME OF US ARE
IN DENIAL AND IT HASN'T HAPPENED
YET.
[LAUGHTER]
SO, PEOPLE AS I UNDERSTAND IT
ARE NOT RETIRED UNTIL THEY WALK
OUT THE TORR BUT THAT'S HIS PLAN
AND THOSE WILL BE BIG SHOES TO
FILL.
THERE'S A SUCCESSION PLAN WITH
Dr. HUGH WHO IS THE DEPUTY
DIRECTOR AND IS GOING TO BE THE
ACTING DIRECTOR AND I BELIEVE
THE SEARCH COMMITTEE IS FORMING
NOW TO FINDS A NEW DIRECTOR.
HE HAS BEEN THE DIRECTOR FOR 34
YEARS OR SOMETHING LIKE THAT AND
IT WILL BE A NEW ERA, LET'S PUT
IT THAT WAY.
IT'S ON THE BOOKS.
>>TO WE HAVE ANY QUESTIONS FOR
Dr. BIANCHI WELL THEN I'D
WOULD LIKE TO THANK YOU FOR THE
WONDERFUL OVERVIEW AND WE LOOK
FORWARD TO YOU PARTICIPATING IN
THE MEETING AS YOU CAN.
>>Dr. Bianchi: THANK YOU FOR
YOUR QUESTIONS.
>>Chair Dr. Perreault: OUT NEXT
PRESENTATION IS AN UPDATE FROM
Dr. THERESA CRUZ WHO WILL GIVE
HER REPORT AND RESEARCH PLANS
FOR NCMRR.
>>Dr. Cruz: THANK YOU, ERIC.
THANK YOU ALL FOR BEING HERE.
I KNOW THIS IS A REALLY BUSY
TIME OF YEAR AND I KNOW YOU ALL
FILLED OUT A LOT OF PAPERWORK TO
BE HERE AND WE ARE INCREDIBLY
APPRECIATIVE OF YOUR TIME AND
YOUR QUESTIONS AND YOUR INPUT
AND I HOPE THAT THE PRESENTATION
TODAY SHOWS WE DO TAKE THE
COMMENTS THAT YOU HAVE FOR US TO
HEART AND THAT WE DO I AM NOT
MANY THEM TH.
REHABILITATION RESEARCH AT NIH
IS THRIVING AND THEY'RE INVOLVED
IN COLLABORATIONS ACROSS THE
ACROSS THE FEDERAL GOVERNMENT TO
SUPPORT NCMRR'S MISSION.
I HOPE TO DO THAT THROUGH THREE
DIFFERENT AVENUES TO TALK ABOUT
ACTIVITIES THAT OUR STAFF HAVE
BEEN LEADING AND COORDINATING
AND COLLABORATING ON.
TO TALK ABOUT SOME RESEARCH
FINDINGS IN THE LAST MAYBE SIX
MONTHS OR SO.
LARGELY DRIVEN BY OUR JUNIOR
INVESTIGATORS SHOWING THAT THE
HEALTH OF OUR RESEARCH FIELD IS
STRONG AND TO A PORTFOLIO
ANALYSIS OF THE REHAB PORTFOLIO
ACROSS NIH AND IN MAY WE'LL DO
MORE OF A DEEPER DIVE INTO NCMRR
WITH THAT AND LET'S BEGIN.
IF YOU COULD POP FORWARD TO
SLIDE FOUR.
THANK YOU.
SO, NOTHING THAT WE DO AT NCMRR
WOULD BE POSSIBLE WITHOUT THE
INCREDIBLE STAFF THAT WE HAVE
AND THE LAST FEW MONTHS HAVE
BEEN A LITTLE BIT HARD FOR US
AND, ME IN PARTICULAR, I REALLY
WANTED TO ACKNOWLEDGE THEN
CREDIBLE WORK THAT THE STAFF HAS
DONE TO SUPPORT ME AND TO
SUPPORT OUR MISSION.
A FEW HI LIGHTS OF THAT, SUE
MARTIN, OUR EXPERT IN CLINICAL
TRIALS AND IN POLICY, WAS
DETAILED TO THE NATIONAL
INSTITUTE ON NURSING RESEARCH AS
THEIR ACTING DEPUTY DIRECTOR OF
DIVISION OF EXTRAMURAL
ACTIVITIES OR SOMETHING ALONG
THOSE LINES.
AND IT'S REALLY IMPORTANT THAT
WE SPREAD REHAB WHERE WE CAN AND
THE WAYS THAT WE CAN AT NIH SO
IT'S REALLY A TESTAMENT TO SUE
HER EXPERIENCE FILLING IN OVER
AT NINR HELPING THEM ON BOARD
SOME NEW LEADERSHIP THERE.
AND I WOULD ALSO LIKE TO
ACKNOWLEDGE JOE BONNER, WHO IS
CURRENTLY DETAILING PART-TIME TO
NINDS AND TO HELP RUN A BRAIN
INITIATIVE RFA, AND THAT IS A
PERSONAL FAVORITE TO ME AS WELL
AS TO NINDS AND THE IMPACT OF
THAT WORK IS RELATED IT
REHABILITATIONING AND AGAIN I'M
VERY GRATEFUL THAT WE ARE
SPREADING OUR EXPERTISE ONLY ONE
PERSON CAN DETAIL AT A TIME
THOUGH.
[LAUGHTER]
THAT WOULD BE TOO MUCH.
AND I ALSO WANTED TO
ACKNOWLEDGE.
I MAY HAVE MENTIONED THIS AT OUR
MEETING IN MAY THAT TOYIN
AJISAFE IS THE NICHD CONTACT FOR
SMALL BUSINESS PROGRAM.
WE SPEND 10%, MAYBE MORE, OF OUR
NCMRR BUDGET ON SMALL BUSINESS
AND IT'S A HUGE RESOURCE FOR OUR
TECHNOLOGY REHABILITATION AND A
SIS TIVE TECHNOLOGY PROGRAMS AND
SO IT'S INCRED PLOW IMPORTANT
THAT WE HAVE A PERSON AT THE
TABLE WHEN WE'RE DISCUSSING KIND
OF BROADER NIH AND SMALL
BUSINESS ADMINISTRATIVE ISSUES
SO THANK YOU FOR THAT.
APOLOGIES FOR THE THIRD PERSON,
WE WEREN'T QUITE SURE WHO WOULD
THEREFORE DELIVER THIS TALK TODM
PARTICIPATE IN AN NIH-EXECUTIVE
LEADERSHIP PROGRAM AND I WANT TO
THANK Dr. BIANCHI FOR
SUPPORTING ME IN THAT AND
PROVIDING THE TIME AND SPACE FOR
ME TO GO DOWN TO THE PARTNERSHIP
FOR A PUBLIC SERVICE AND GET
THAT TRAINING.
IT'S A WONDERFUL COHORT AND I'M
CONNECTING WITH I.C. DIRECTORS
AND DEPUTIES AND OTHER LEADERS
AT NIH AND PREACHING THE GOOD
NEWS OF ROW HABITATION IS WE'LL
SEE PAYOFF FROM THIS FOR QUITE
SOME TIME.
IF YOU ARE INTERESTED IN A
CAREER IN PUBLIC SERVICE, OR YOU
HAVE PEOPLE, WHO MIGHT BE, IT'S
GOOD TO KNOW WHO MIGHT BE
INTERESTED IN THE FUTURES.
NEXT SLIDE, AGAIN, ONE MORE.
SO ONE OF THE MAIN THINGS THAT
WE DO IS PRODUCE FUNDING
ANNOUNCEMENTS AFTER HAVING IT
INFORMED BY YOU AND ONE THAT HAS
BEEN IS THE EARLY CAREER
RESEARCH RO3 AND I WANT TO THANK
MARIA AND WHO ACCEPT ARTED THE
REISSUE OF THAT THAT WAS HER
FIRST FUNDING ANNOUNCEMENT AND I
WAS PLEASED WITH THAT AND WE
HAVE INSTITUTED THIS AS A WAY TO
BRIDGE THE GAP IF THE ABSENCE OF
THE K12 PROGRAM SO I ENCOURAGE
JUNIOR FACULTY TO LOOK AT THIS
LARGEST BUDGET RO3 AND WHAT I AM
MOST PROUD IS WE HAVE INCLUDED A
REQUIREMENT FOR PERPS WITH LIVED
EXPERIENCE IN THE APPLICATION
AND THAT WAS SOMETHING WE TRIED
OUT FOR THE FIRST TIME IN THE
RFA AND JOE RAN ON THE RIGHT
SIDE OF THAT SLIDE MOST COME IN
THROUGH THE PARENT ANNOUNCEMENTS
SO WE DON'T HAVE A LOT OF
CONTROL OF WHAT IS REQUIRED IN
THAT APPLICATION BUT WE WE CAN,
I THINK WE ARE MOVING TOWARDS
END USERS AND MORE STAKEHOLDER
AND PRESENCE IN RESEARCH GIVING
US MUCH BETTER QUALITY AND MUCH
MORE RELEVANT RESEARCH I WANT TO
THANK OUR SISTER AGENCIES, WHO
ARE FRANKLY MORE ADVANCED AT
THAT THEN WE HAVE BEEN FOR THEIR
HEALTH AND MOVING THAT ALONG.
WE HAD AN RFA WE BROUGHT OUR
FUNDING PLAN TO COUNCIL A MONTHS
AGO ON PHYSICAL ACTIVITY
INTERVENTIONS FOR WHEELCHAIR
USEEUSEEUSEERS AND THEY'VE NOT E
BUT IT WAS THE WORK WE DID WITH
THE OFFICE OF THE DISEASE
PREVENTION SO WE HOPE TO HAVE
MORE INFORMATION ABOUT THAT.
AND THAT ALSO INCLUDED THE
REQUIREMENT FOR PERSONS WITH
LIVED EXPERIENCE IN THE RESEARCH
PLAN.
ANOTHER COLLABORATION THAT WE
HAVE AT NCMRR IS WITH NIBIB AND
YOU WILL SEE A COUPLE OF
EXAMPLES OF THAT IN THE TALK
TODAY.
AND WE HAD FEEDBACK ABOUT THE
PRICE COMPETITION WE WANTED TO
SUPPORT WITH NIBIB ON THE A SIS
TIVE AND REHABILITATION
TECHNOLOGIES WE AWARDED OUR
FIRST ONE AT END OF THE FISCAL
YEAR AND IT WENT TO A GROUP OF
STUDENTS AT CORNELL UNIVERSITY
AND THEY DEVELOPED AN AI-DRIVEN
PHYSICAL THERAPY PLATFORM USING
COMPUTER VISION THAT PROVIDES
PATIENTS WITH REAL-TIME FEEDBACK
ON THEIR EXERCISES AND MOST
IMPORTANTLY INTERACTS WITH THE
HEALTHCARE PROFESSIONAL AND THE
EHR.
I'M GETTING FEEDBACK.
IF YOU CAN MAKE SURE YOU ARE
MUTED, I WOULD APPRECIATE THAT.
THANK YOU.
SO WE HOPE TO CONTINUE THIS
PROGRAM AND AND ONE OF MY
FAVORITE THINGS IS OUR FORMER
TRIPLE A FELLOW IS NOW AT NIBIB
CONTRIBUTING SIGNIFICANTLY TO
THIS PROGRAM SO AGAIN, IT'S GOOD
THAT WE ARE MAKING THOSE
OUTREACHES.
NEXT SLIDE, THERE ARE OTHER
PRIZE COMPETITIONS AND I BRING
IT UP BECAUSE IT'S SOMETHING WE
MIGHT WANT TO CONSIDER DOING
MORE OF AND YOU ARE GOING TO BE
HEARING FROM Dr. SYRNICH LATER
ABOUT STRIVE AND THE WORK WE'RE
DOING IN DEIA BUT WE DID HAVE A
YOUTH ART CHALLENGE TO TALK
ABOUT OUR AROUND HEALTH QI AND
THE PRIZE ON THE RIGHT, THE
PRIZE WAS SUPPORTED THROUGH THE
SPARK PROGRAM AND THEY WERE PART
OF THAT CHALLENGE AND THE PURE
OF THAT PROGRAM IS TO ADVERSE
PERIPHERAL NERVE STIMULATION AND
AUTONOMIC SYSTEM, UNDERSTANDING
AND TREATMENT.
I THOUGHT IT WAS INCREDIBLE OF
THE EIGHT PRIZES THEY AWARDED
FOUR OF THEM WERE RELATED TO
SPINAL CORD TECHNOLOGIES THAT
COULD OR WERE PLANNING TO
INFLUENCE BOWEL AND BLADDER
CONTROL, WHICH IS A HUGE ISSUE
FOR OUR POPULATIONS.
THOSE JUST TO NAME A FEW, IT WAS
LAUREN GRILL, AT DUKE, ANTHONY
DiMARCO AT CLEVELAND, THE
SPINAL CORD INJURY GROUP AT THE
UNIVERSITY OF LOUIEVILLE AND THE
DEPARTMENT OF NEUROLOGY AT THE
UNIVERSITY OF PITTSBURG SO
PEOPLE ARE VERY FAMILIAR TO US
IN REHABILITATION BUT THEN AGAIN
ACKNOWLEDGED BY THIS MUCH LARGER
NIH PROGRAM.
WE HAVE ALSO BEEN ACTIVE IN OUR
COLLEAGUES AT NINDS FOR THE WORK
WE DID ON CEREBRAL PALSY.
THIS WAS A MID-YEAR, MID-LIFE
CHECK IN ON THE CEREBRAL PAUL
SEEPALSYSTRATEGIC PLAN.
WE HAD THIS FIVE-YEAR CHECK IN
AND WE ARE DOING INCREDIBLE
AMOUNTS OF WORK IN THE AREA OF
CEREBRAL PALSY AND IT WAS REALLY
EVENLY DISTRIBUTED BETWEEN NICHD
AND NINDS.
IF YOU WEREN'T ABLE TO BE A PART
OF THAT WORKSHOP, THE RECORDINGS
ARE AVAILABLE AND I WOULD
ENCOURAGE YOU TO TAKE A LOOK AT
THEM.
WE DID HAVE A PATIENT WHO SPOKE
ELOQUENTLY ABOUT HER EXPERIENCES
AS A RESEARCH SUBJECT AND ONE OF
OUR SUPPORTIVE TRIALS.
I WANT TO ACKNOWLEDGE THE WORK
THAT NIDDK IS DOING.
WE'VE INTERACTED WITH THEM A BIT
LAST YEAR AND THEY'RE UROLOGY
COORDINATING COMMITTEE, MUCH
LIKE YOU ALL ADVISE US, AND THE
ADVANCEMENT OF THEIR INTERESTS
IN NEURO UROLOGY AND THEY HAD A
WORKSHOP I WOULDEN ENCOURAGE YOU
TO TAKE A LOOK THERE AND I HAVE
THE ABSOLUTE PLEASURE IN
SEPTEMBER OF WORKING WITH ROGER
GLASS.
HE IS THE DIRECTOR OF FOGERTY
INTERNATIONAL CENTER AND
PICTURED THERE ON THE RIGHT.
IN MEETING WITH CLAUDINE HUMARE
SHE'S A LOWER-LIMB AMPUTEE FROM
RWANDA AND SHE'S FINISHING UP
HER PROSTHETIC ORTHOTICS DEGREE
IN THE UNITED STATES.
SHE SPOKE US ABOUT THE NEED OF
AMPUTEE IN LOW AND MIDDLE INCOME
COUNTRIES AND HER PLANS TO TAGEL
THAT.
SHE'S AN INCREDIBLE WOMAN AND IF
YOU DON'T KNOW HER, I WOULD
ENCOURAGE YOU TO LOOK AT --
SHE'S GOT GREAT YouTube
VIDEOS.
SHE WAS TREATED BY PA PAUL FARM,
HE WAS THE FOUNDER OF PARTNERS
IN HEALTH, HE SADLY PASSED AWAY.
THAT WAS A GREAT EXPERIENCE
MEETING AND HEARING HER
PERSPECTIVE.
THE LAST GROUP I WANT TO
ACKNOWLEDGE IS SOME COLLEAGUES
AT THE NATIONAL GENOME INSTITUTE
AND THEY LOOKED AT THE
INTERSECTION OF DISABILITIES AND
GENOMICS AND TAKING ON A
HISTORIC VIEW AND LOOKING AT THE
WAY SOCIETY HAS TREATED PEOPLE
WITH DISABILITIES AND POORLY
PROVIDING A BACKGROUND FOR HOW
WE MIGHT DO BETTER IN THE FUTURE
AND SO WE'VE TALKED ABOUT THE
WORK WE PLAN ON DOING ON
ABLEISM, AND I THINK THIS WAS A
A GOOD LEAD INTO WHAT WE MIGHT
BE DOING MORE IN TODAY'S MEDICAL
SYSTEM TO HELP PEOPLE WITH
DISABILITIES, WE TALKED ABOUT
MEETINGS WITH CAPITOL HILL AND I
SHOULD HAVE INCLUDED IN THE LIST
HERE.
I DO MEET WITH ADVOCACY GROUPS
SO WE ARE AVAILABLE WE MET WITH
THE SPINA BIFIDA ASSOCIATION AND
MY COLLEAGUES, NICK LANGUAGE AND
I FROM NIDS MET WITH THE
ULTRASOUND ASSOCIATION.
IT'S NOT A TECHNOLOGY WE'VE SEEN
MUCH IN NCMRR'S PORTFOLIO BUT WE
SEE IT MUCH MORE IF THE BRAIN
INITIATIVE AND THERE WAS A
QUESTION ABOUT OSTP AND I HAD A
WITHWONDERFUL EXPERIENCE IN THE
MIDDLE OF SEPTEMBER AND A
MEETING WITH THE VETERAN'S.
THEIR A.I. INSTITUTE HAD A
MEETING AND I GOT TO SHARE THE
PRESENTATIONS WITH JACKIE WARD,
FROM OSTP AS INTER Dr. BIANCHI
MENTIONED, THERE'S A LOT OF
FORMER NIHERS RUNNING AROUND
OSTP SO IT WAS GOOD TO CONNECT
WITH HER.
THE PURPOSE OF THAT PRESENTATION
WAS NOT REHABILITATION, IT WAS
MORE ABOUT BRAIN AND THE LAST
THING I WANTED WITH THE BLUE
PRINT FOR NEUROSCIENCE MEDICINE
TECH PROGRAM.
THERE'S A GROUP OF PROGRAM
OFFICERS AND ENGINEERS ACROSS
SEVERAL OF THE NIH NEUROSCIENCE
INSTITUTES WHO ARE WHO HAVE
LAUNCH A ECOSYSTEM TO ADVANCE
AND DEVELOP NEW TECHNOLOGIES AND
TO DISRUPT THE FIELD.
WHAT IS ONE OF THE MORE
INTERESTING THINGS, IS THAT PART
OF THAT THE HUBS AND THOSE OLE
CAB RACES INCLUDES A GROUP FROM
HOWARD UNIVERSITY LOOKING AT HE
EQUATECH SO IT'S A THREAD FOR AF
US FOR QUITE SOME TIME AND MORE
NEEDS TO BE DONE AND SO THIS
GROUP IS FOCUSING ON HOW WE CAN
BRING IN MORE TOY VERSE
PERSPECTIVES IN THE DEVICE, THE
MEDICAL DEVICE SYSTEM,
ECOSYSTEM.
SO, MORE TO COME FROM THAT.
NEXT SLIDE.
WE ARE TRAVELING AGAIN, MOST OF
US, WE'RE TRYING TO BE OUT AND
SEEING YOU ALL AND CONVERSATION
THAT'S RALPH AND JOE AND MARIA
AND TOYIN AND SUE I HAVE TRIED
TO BE AT IN THE LAST SIX MONTHS.
IF THERE ARE MEETINGS THAT YOU
THINK WE WITH BENEFIT FROM, THAT
ARE GRANTEES, PLEASE LET US
KNOW.
WE HAVE A PRETTY HEALTHY LIST
BUT THERE'S ALWAYS SEEMS TO BE
MORE MORE OPPORTUNITIES FOR US
TO INTERACT WITH YOU.
THE LAST THING I WANT TO MENTION
IS OUR REHABILITATION RESEARCH
SPEAKER SERIES.
A FEW WEEKS AFTER WE MET IN MAY,
WE HELD A SIS TIVE
REHABILITATION TECHNOLOGIES
SESSION AND THEN IN NOVEMBER, WE
HELD OUR AINL REHABILITATION
RESEARCH AND I WANTED TO THANK
THE SPEAKERS AND AGAIN TOYIN HAS
BEEN REALLY INSTRUMENTAL IN
GETTING THESE LAUNCHED.
YOU KNOW, THIS IS SOMETHING THAT
WE STARTED TO PROVIDE AN AVENUE
TO HIGHLIGHT THE RESEARCH THAT
WE SUPPORT BOTH IN NCMRR AND A
SEARCH REHABILITATION GIVEN THAT
WE WEREN'T TRAVELING AS MUCH, WE
WEREN'T HAVING THESE EXTENDED
MEETINGS AND I'M NOT SURE THAT
BUT I REALIZE THAT THINGS ARE
CHANGING SO YOU KNOW, IF YOU
HAVE FEEDBACK ON THAT, I AM
HAPPY TO TAKE THAT AS WELL.
BUT, INCREDIBLE TALKS AND THANK
YOU SO THE SPEAKERS WHO HAVE
GIVEN GENEROUSLY OF THEIR TIME.
NEXT SLIDE.
I WANT TO HIT ON A FEW SCIENCE
ADVANCES.
WE OFTEN GET ASKED ABOUT THE
INTERSECTION OF COVID-19 AND
REHABILITATION.
THE FIRST PAPER IS A PILOT AWARD
MADE AT THE MEDICAL UNIVERSITY
OF SOUTH CAROLINA AND THEY WERE
ABLE TO SHOW THAT YOU CAN SAFETY
DO A ADD-HOME
SELF-ADMINISTRATIVE
TRANSCUTANEOUS STIMULATION AND
WE'VE HEARD FROM YOU OFTEN THAT
TELE REHAB IS THE WAVE OF FUTURE
AND IT'S IMPORTANT WE HAVE
SAFETY AND FEASIBILITY STUDIES
SO SEE WHETHER SOMETHING AS
SIGNIFICANT AS NEURO MODULATION
CAN BE DONE AT THE HOME.
THIS WAS NOT POWERED TO LOOK AT
EFFICACY BUT TO MANAGE LONG
COVID SYMPTOMS.
SO WE LOOK AT MORE RESEARCH
ALONG THESE LINES.
AND THEN THE SECOND ONE IS FROM
A K99 GRANTEE USING THE NIDLER
FUNDED DATA AND TO LOOK AT
CHANGES IN COLOR USE AND MOOD
DURING THE COVID-19 PANDEMIC IN
PEOPLE WITH TRAUMATIC BRAIN
INJURIES AND THEY FOUND THERE
WERE INCREASES IN ALCOHOL
CONSUMPTION DURING THE PANDEMIC
AND THERE WERE ALSO, IN A
SUBGROUP OF HISPANICS, THAT
PANDEMIC EXPOSED HISPANICS WITH
TBI HAD LARGE ELEVATIONS IN
ANXIETY SYMPTOMS COMPARED TO
UNEXPOSED HISPANICS WITH TBI AND
YOU KNOW, COULD THAT HAVE BEEN A
RESULT OF THE HEALTH INEQUITIES
THAT WERE SEEN DURING THE
PANDEMIC SO I WANT TO HIGHLIGHT
THESE TWO EXAMPLES OF RESEARCH
THAT WE HAVE SUPPORTED AND
CONJUNCTION WITH OUR
COLLABORATORS NEXT SLIDE.
ANOTHER AREA THAT I THINK IS
IMPORTANT FOR US TO LOOK AT IS
THE INTERSECTION OF DISABILITY
AND HEALTH.
Dr. BIANCHI TALKED ABOUT NICHD
LONG HISTORY IN REPRODUCTIVE
HEALTH PEOPLE WITH DISABILITIES
SEPARATELY.
THE FIRST STUDY HERE IS AN
INTERSECTION OF THOSE TWO.
SO, THIS WAS FROM A K-12 AWARDEE
SCHOLAR AND THEY FOUND THAT
ADOLESCENCE WITH CEREBRAL PALSY
WERE THROW TIMES LESS LIKELY TO
START AND TWO TIMES LESS LIKELY
TO BE UP-TO-DATE ON THEIR HPV
IMMUNIZATION SERIES COMPARED TO
THEIR AGE-MATCHED PEERS.
IT AT ANY TIME MATTER THE GENDER
OR THE AMBULATORY STATUS OR THE
GMSCS LEVEL WITH THE ADOLESCENT,
THERE WERE STILL SEEING THIS
DIFFERENCE IN IMMUNIZATION
RATES.
SO, CLEARLY, THIS SPEAKS TO OR
INTEREST IN HOW PEOPLE WITH
DISABILITIES INTERACT WITH THE
BROADER HEALTH SYSTEM.
AND THEN FINALLY, THE PAPER
ACTUALLY CAME OUT A LITTLE BIT
LONGER AGO, IT WAS THE END OF
LAST YEAR AND LOOKING AT THE
EFFECTS OF BOTH AGE AND CRON IS
TEE ON DISABILITY FUNCTIONAL
PENDANCE AND COMMUNITY
PARTICIPATION, THESE
INVESTIGATORS, IT WAS A K99
INVESTIGATOR USING THE TBI MODEL
SYSTEMS DATA AND SHOWING THAT
THERE'S INCREASED RATES OF
DISABILITY FUNCTIONAL
INDEPENDENT ANT REDUCED
FUNCTIONAL INDEPENDENCE AND LESS
COMMUNITY PARTICIPATION WITH
OLDER AGE AND THERE WAS ALSO
THIS INTERSECTION CONTINUE THOSE
THIS INTERACTION WITH THE
VARIABLES.
I AM EXCITED WITH THE LARGER NIH
OT LEVEL PICKS UP IN
REHABILITATION AND SO A COUPLE
MONTHS AGO, THEY HAD IN THEIR
LAY PUBLICATION, NIH RESEARCH
MATTERS, A FEATURE ON SOME WORK
BY STEVE COLLINS AT STANFORD AND
WHO IS JOINTLY FUNDED BY NIBI
AND NCMRR CO FUNDS THIS CENTER
ON HIS ROBOTIC EXOSKELETON WORK
AND THIS PARTICULAR PAPER IN
NATURE FOCUSED ON HEALTHY
INDIVIDUALS WEARING THE DEVICE
AND OF COURSE THERE'S
IMPLICATIONS FOR PEOPLE WITH
MOBILITY IMPAIRMENTS.
AND I'M GOING TO PAUSE.
IF YOU CAN GO TO THE NEXT SLIDE.
WE'RE GOING TO TRANSITION A
LITTLE BIT.
ONE THING I DIDN'T HAVE A SLIDE
FOR, BUT I DID WANT TO PUT IN
YOUR EAR, IS THAT THE ADVISORY
EXIT' TO THE NIH DIRECTOR IS
MEETING AT THE END OF THE WEEK.
AND IF YOU HAVE TIME OR YOU
WOULD LIKE TO LOOK LATER, AT 1
11:00A.M. ON FRIDAY, THE WORKFOE
DIVERSITY WILL BE REPORTING OUT
AT THE WORK OF THE SUBCOMMITTEE
ON PEOPLE WITH DISABILITIES.
THAT SUBCOMMITTEE INCLUDED THREE
FORMER ADVISORY BOARD MEMBERS.
I CAN'T TALK ABOUT WHAT THE
REPORT WILL SAY, BECAUSE IT HAS
NOT BEEN PRESENTED PUBLICLY.
I THINK THAT IT WOULD BE
SOMETHING THAT WE WILL TALK
ABOUT AT THE MAY MEETING AND IF
YOU WOULD LIKE TO SEE HOW THAT
GROUP REPORTS OUT ON THINGS THAT
NIH CAN DO TO IMPROVE THE
INCLUSION OF RESEARCHERS WITH
DISABILITIES IN THE NIH
COMMUNITY, I WOULD ENCOURAGE YOU
TO TACK TAKE A LOOK AT THAT.
SO WITH THE LAST COUPLE MINUTES
I HAVE, NEXT SLIDE, I DID WANT
TO TALK ABOUT HOW NIH IS
REHABILITATION PORTFOLIO BROAD Y
IS DOING.
IN MAY, WE'LL DO A DEEPER DIVE
INTO THE NCMRR PORTION OF THAT
HAVE.
SO HERE WE HAVE THE EXTRAMURAL
RESEARCH PORTFOLIO.
IF YOU TAKE A LOOK AT R CDC,
WHICH IS OUR OFFICIAL REPORTING
OF DOLLARS IN DESIGNATED
CATEGORIES THE NUMBERS ARE
HIGHER BUZZ WE HAVE TAKEN OUT
THE INTRAMURAL PORTION OF THAT
AND SINCE THIS IS AN EXTRAMURAL
ADVISORY BOARD.
YOU CAN SEE THAT WE'VE HAD
SIGNIFICANT GROWTH SINCE THE
PUBLISHING OF OUR FIRST RESEARCH
PLAN IN 2016.
IT'S ABOUT A 40% GROWTH IN THAT
TIME.
THIS WAS NOT ACHIEVED THROUGH A
SET ASIDE FROM CONGRESS FOR AN
EXTRA $100 MILLION THIS YEAR.
IT WAS ACHIEVED BY
REHABILITATION PRINCIPLE
INVESTIGATORS PUTTING IN
SUCCESSFUL APPLICATIONS INTO THE
NIH SYSTEM.
SO I THINK THIS REALLY SPEAK TO
THE WORK THAT THE CENTER HAD
DONE PREVIOUSLY THAT YOU ALL
HAVE DONE PREVIOUSLY TO CREATE A
CAD RAY OF REHABILITATION
RESEARCHERS WHO SUCCESSFULLY
COMPETE FOR NIH FUNDING.
LOOKING AT THAT FUNDING FROM FY
FISCAL YEAR '21, I REALLY WANT
TO ACKNOWLEDGE THAT THERE ARE
OTHER PARTS OF NIH BESIDES NCMRR
THAT FUNDS SIGNIFICANT AMOUNTS
OF REHABILITATION RESEARCH
PARTICULARLY NINDS, THE NATIONAL
INSTITUTE ON AGING, NATIONAL
INSTITUTE DEAFNESS AND OTHER
DISORDERSMENT IT'S IMPORTANT
THAT WE HAVE THESE PARTNERS AT
THE TABLE.
THEY ARE HERE TODAY AT THIS
MEETING THAT WE WORK WITH THEM,
BECAUSE THEY ARE DOING
INCREDIBLE WORK AND I WANTED TO
ACKNOWLEDGE THEM HERE.
THE OTHER THING I WANTED TO SAY
WITH THIS BEFO GRAPH IS THE LARE
PORTION OF SMALL BUSINESS
FUNDING THAT GOES TO
REHABILITATION AS WELL AS THE
SIGNIFICANCE IN THE R SERIES
GRANTS, THE RESEARCH PROJECTS
GRANTS.
REHABILITATION RESEARCH INVOLVES
A LOT OF CLINICAL TRIALS.
ABOUT A THIRD OF THE PORTFOLIO
INVOLVES AN NIH-DEFINED CLINICAL
TRIAL YOU CAN SEE THAT HERE.
AND IF WE GO TO THE NEXT SLIDE,
CLINICAL TRIALS ARE ALSO VERY
EXPENSIVE.
YOU WILL SEE THAT THE COLUMNS
GOT CLOSER IN HEIGHT.
SO ABOUT 45% OF THE
REHABILITATION PORTFOLIO GOES TO
CLINICAL TRIALS SPENDING AND I
BRING THIS UP BECAUSE IT HAS AN
IMPLICATION.
BOTH TO HOW WE ARE STEWARDS OF
THE SCIENCE THE SAFETY OF OUR
RESEARCH PARTICIPANTS.
TOMORROW YOU WILL HAVE SOME
PRESENTATIONS FROM INTEREST
REBECA ROUZIL THE ASSOCIATE
DIRECTOR OF DIVISION OF
EXTRAMURAL ACTIVITIES AT NICHD
AND PART OF THAT CONVERSATION IS
GOING TO BE ABOUT HOW DO WE HAVE
THE STANDARD OPERATING
PROCEDURES HOW WE MANAGE OUR
CLINICAL TRIALS BOTH FOR THE
SCIENCE AS WELL AS FOR THE
FUNDING.
SO, WE HAVE NEW POLICIES AS AN
INSTITUTE IN THE COMING YEAR AND
SO THIS IS PART OF THE REASON
WHY WHEN PROGRAMS STAFF HAVE
QUESTIONS ABOUT HOW WE'RE DOING
WITH RECRUITMENT, WHO ARE WE
RECRUITING, PART OF IT IS DRIVEN
BY THE SCIENCE AND PART OF IT IS
DRIVEN BY THE FINANCIAL
REALITIES OF IT.
NEXT SLIDE.
WE'D LIKE TO LOOK AT HOW WE ARE
MAPPING OR NEW GRANTS ISSUED IN
'21 TO THE RESEARCH THEMES.
I THINK I CAN SAY THAT WE'RE
DISAPPOINTED IN THE NUMBER IN
THE COMMUNITY AND FAMILY
CATEGORY AND IT WILL TAKE
SOMETHING DISRUPTIVE TO CHANGE
THAT.
WE'RE NOT GOING TO BE ABLE TO
MOVE THAT NEEDLE WITH A FEW
TARGETED SMALL RFAs, SOMETHING
DISRUPTIVE WILL HAVE TO HAPPEN
TO MAKE THAT CHANGE.
NOT SURPRISING, MOST OF THE
CATEGORIZATION FALLS IN OUR
CLINICAL TRIALS WHICH END UP IN
CATEGORY D AND E IS OUR MORE
BASIC SCIENCE AND C IS A SIS
TIVE TECHNOLOGY TELEHEALTH, TELE
REHAB.
IN THE NEXT SLIDE, WE'LL SHOW
TRENDS.
I DON'T KNOW WHAT THAT IS.
IT'S SURPRISING TO SEE THAT
THERE MIGHT HAVE BEEN A LITTLE
BIT OF A SHIFT DURING THE
PANDEMIC AWAY FROM STUDIES THAT
LOOKED MORE AT CLINICAL
POPULATIONS VERSUS ONCE THAT
WERE MORE BASIC SCIENCE.
THAT IS A QUESTION THAT I HAVE.
IF THE CHANGES THAT WE'RE SEEING
HERE ARE A RESULT OF THAT THAT
IS A HYPOTHESIS I DON'T WANT TO
LOOK INTO.
BUT OTHERWISE, WE HAD SEEN A
LITTLE BUMP IN COMMUNITY AND
FAMILY IN 2020 BUT THAT
REBOUNDED SIGNIFICANTLY IN
'21 AND SO I TO RECOGNIZE THAT
SHIFT IN HAVE QUESTIONS ABOUT
WHAT WE CAN DO GOING FORWARD TO
BOOST THAT.
WE ALSO LOCK AT THE TYPE OF
SCIENCE ON THE TRANSLATIONAL
SPECTRUM.
I DON'T THINK IT'S SURPRISING
THAT WE FIND MOST OF OUR GRANTS
FALLING INTO THE APPLIED
CLINICAL DESIGNATION AND THEN
JUST ONE POWER WAY TO LOOK AT
THE DATA ON THE NEXT SLIDE,
HAVING THIS INTERSECTION BETWEEN
THE TWO TYPES -- I'M SORRY,
BETWEEN A PRIMARY THEME AND A
SECONDARY THEME AND SO AGAIN,
WE'RE SEEING LOTS IN THE
CLINICAL TRIALS AS A PRIMARY
THEME AND STRONG INTERSECTIONS
WITH TECHNOLOGY.
THE LAST KIND OF OVERVIEW OF
THE.
>>Tara: I WANTED TO SHOW YOU IS
GEOGRAPHICAL LOCATIONS SO WHERE
ARE WE SENDING THIS MONEY THE
PORTFOLIO WAS GLOBAL BUT IT WAS
DIFFICULT TO SEE ALL OF THAT ON
A GLOBAL MAP.
AND AS PART OF OUR DISCUSSIONS
ON DIVERSITY AND INCLUSION, PART
OF THAT IS RURAL VERSUS URBAN
AND THE COASTS VERSUS THE
CENTRAL PART OF THE COUNTRY AND
SO THIS IS JUST A SNAPSHOT AND
SOMETHING I WANT TO DIG IN MORE
BUT AT FIRST GLANCE, I AM
ACTUALLY QUITE HAPPY AT THE FILL
IN THIS MAP.
I'VE SEEN OTHER PORTFOLIOS THAT
WERE NOT AS DISTRIBUTED ACROSS
THE COUNTRY AND THAT THERE ARE
CERTAINLY AREAS ON THIS MAP THAT
ARE LACKING IN NIH SUPPORT AND
SO THAT IS A CALL AT LEAST TO MY
MIND, ARE THERE WAYS THAT WE CAN
BE DOING BETTER OUTREACH.
I'VE BEEN TALKING FOR A LONG
TIME.
AGAIN, I HOPE THIS PRESENTATION
HAS CONVEYED WE ARE ACTIVE, OUT
THERE AND THE STAFF OF NCMRR IS
INCREDIBLE AND I NEED TO THANK
THEM AND OUR COLLEAGUES ACROSS
NIH FOR THEIR SUPPORT OF
REHABILITATION RESEARCH AND OF
COURSE, THE WORK THAT YOU ALL
ARE DOING AND WITH THAT, I WILL
OPEN IT TO COMMENTS OR
QUESTIONS.
>>Chair Dr. Perreault: THANK
YOU.
DO WE HAVE ANY QUESTIONS OR
COMMENTS FOR THERESA?
>>THANK YOU FOR A VERY
COMPREHENSIVE PRESENTATION.
I WAS EXCITED ABOUT THE
COMPETITION FOR UNDERGRADUATES.
I THINK IT'S GREAT.
I'M NOT SURE INSTRUCTOR FOR THIS
CAPSTONE PROJECTS, NORMALLY TWO
SEMESTER SEQUENCE SO THIS IS
GREAT AND I WONDER IF THERE ARE
ANY PLANS TO ACTUALLY SUPPORT
THE STEPS.
NOT THE PRICE BUT THE PROJECTS
AND THAT IS CHALLENGING
PARTICULARLY FOR MINORITY
INSTITUTIONS BECAUSE YOU NEED
SOME BASELINE FUNDING TO SUPPORT
THESE PROJECTS FROM THE STUDENTS
THAT THEY MIGHT NOT HAVE.
>>SO, I WOULD SAY WE HAVE A
COUPLE THINGS WE CAN DO THERE
AND NIBIB HAS AN R25 THAT WE'VE
SUPPORTED AND AND THAT DOES IT
PROVIDES PLUS OR MINUS TO
SUPPORT THOSE CAPSTONE PROGRAMS
AND THEY HAVE AN R25 THAT THE
NIBIB ONE THEY HAVE ONE THAT
TARGETED UNDERSERVED
INSTITUTIONS AND I DON'T WANT TO
MISSTATEMENT HOW IT'S WORDED BUT
IT MIGHT BE MSIs OR SOMETHING
OF THE LIKE.
THAT IS MORE SPECIFIC TO THIS
TYPE OF PRIZE.
THE OTHER THING IS PRIZES CAN
CAN BE FLEXIBILITY AND SO LOW
FURRED FOR POEM TO ENGAGE IN AND
YOU COULD GIVE LOTS.
YOU COULD GIVE 50, $10,000
PRIZES, RIGHT, SO GET PEOPLE
GOING AND HAVE THEM COME AND
COMPETE AT A SECOND LEVEL AND SO
THAT NEURO MAUD PRIZE THAT WAS
LEVEL ONE AND THEN THEY CONTINUE
AND THAT IS ONE WAY TO DO IT SO
YOU KNOW RIGHT NOW WE ARE RIDING
NIBIB'S COATTAILS BUT YOU KNOW
THAT IS SOMETHING THAT WE CAN
SAY, ALL RIGHT, IF WE WANTED TO
DO THIS OURSELVES, HOW CAN WE BE
THE MOST IMPACTFUL FOR OUR
COMMUNITIES SO THOSE ARE GREAT
SUGGESTIONS.
>>I THINK BEYOND THE
OPPORTUNITY FOR COMMUNICATIONS
AND FOR GETTING FEEDBACK AND YOU
KNOW, MAYBE THEY FEEL PROUD OF
THE WORK.
I MEAN, IT'S REALLY A WIN-WIN
HERE IN TERMS OF THESE PROJECTS
AND I HAVE -- YOU KNOW, I KNOW
SOMETHING HAS BEEN DONE BUT IN
TERMS OF SOME MORE ADDITIONAL
COMPETITIONS FOR JUNIOR OR
ESTABLISHED PEOPLE OR FROM
INDUSTRY TO ADDRESS PROBLEMS IN
REHAB, RIGHT.
DEPLOYING A.I. OR MACHINE
LEARNING ON DATASETS, YOU KNOW.
IT COULD BE A COMPETITIONS THAT
WOULD RESULT ON PAPERS THAT WE
PEER REVIEW AND EVERYBODY WINS,
RIGHT.
SO I WONDER IF THERE ARE MORE
NEURO MODULATION PRIZE OR SOME
OTHER -- I THINK THAT WOULD BE A
WAY TO ENGAGE THE LARGEST
AUDIENCE AND MAYBE ATTRACT EVEN
PEOPLE FROM OTHER AREAS THAT GET
ON OUR BUT THEY COULD TRANSLATE
TOOLS AND SYSTEMS TO OUR MISSION
HERE.
>>Dr. Cruz: I'M GETTING YOUR
EXCITEMENT ON THE PRIZES.
I DON'T HAVE ANYTHING IN THE
WORKS PER SE.
I AM TAKING YOUR FEEDBACK.
>>THANK YOU.
>>DAN: FRANCISCO.
>>THANK YOU, Dr. CRUZ, FOR
SUCH A COMPREHENSIVE OVERVIEW.
I WAS JUST WANTED TO FOLLOW-UP
ON ONE OF YOUR SLIDES ABOUT THE
EXTRAMURAL RESEARCH PRIMARY
THEMES, WHERE YOU DESCRIBE THEM
IN DETAIL AND THEN YOU SAID THAT
YOU THOUGHT IT WOULD TAKE DIS
RECOMMEND TOUGH CHANGES IN THE
POSITIVE AND HOW CAN WE BE OF
MOST AID IN PERHAPS PER
INVESTMENTING THIS CHANGE?
>>Dr. Cruz: THANK YOU FOR THE
QUESTION.
WHEN I SEE ONLY 1% OF OUR BUDGET
IS GOING SOMEWHERE, YOU KNOW,
AND HOW MUCH MONEY NCMRR HAS TO
REINVEST IN A NEW AREA IN A
GIVEN YEAR, MOST OF OUR RFAs
ARE $1 MILLION AND $2 MILLION
AND EVEN IF WE SAID WE'LL START
A PROGRAM AND SOMETHING, ANY
AREA, THAT ALONE I DON'T THINK
IIS GOING TO DRASTICALLY CHANGE
THAT DIVISION OF SCIENTIFIC
PROGRESS, I GUESS.
AND SO WHEN I THINK DISRUPTIVE,
I'M THINKING THE WORK THAT WE'RE
DOING IN ABLEISM.
TO ME, THAT WOULD BE A
DISRUPTIVE TOPIC AT NIH AND I'M
HAVING LOTS OF CONVERSATIONS
WITH PEOPLE AT NIH, I'M
PRESENTING THIS IDEA AND I'M
TRYING TO GET BUY IN AND I THINK
THERE ARE OPPORTUNITIES THERE.
I DON'T HAVE A DATE FOR OUR
WORKSHOP BUT IT WILL BE HOPING
APRIL-MAY TIMEFRAME.
I'M BRINGING PEOPLE TOGETHER
FROM DIFFERENT INSTITUTES AND
THERE'S A LOT OF ENERGY THERE
AND SO WHEN I TALK ABOUT
DISRUPTION, I'M HOPING HA THE
IDEA IS THAT PEOPLE WITH LIVED
EXPERIENCE WHEN WE'RE NOT
REQUIRING IT AND THAT THEY WILL
BRING KIND OF THE PRINCIPLES
THAT NCMRR IS ADVANCING INTO
RESEARCH THAT GOES TO A REGULAR
PARENT 101 SO THOSE ARE THE
TYPES OF THINGS THAT I'M
THINKING OF AND SO YOU KNOW,
WHEN YOU ALL ARE PUTTING IN YOUR
GRANT APPLICATIONS, AND IT'S NOT
REQUIRED TO HAVE REPRESENTATIVE
FROM END USERS IS THAT SOMETHING
YOU BRING ANYWAY TO MAKE YOUR
RESEARCH BETTER?
THINGS LIKE THAT THAT IS A BIG
CULTURE SHIFT FOR SOME AND IT'S
NOT MAYBE PART OF MORE OF OUR
BASIC SCIENCES, FOR EXAMPLE.
AND SO, THAT IS WHAT I'M
THINKING WHEN I SAY DIS DISRUPTE
BUT I'M OPEN TO OTHER INPUT.
>>I SHOULD ADD THAT THE TRAIL
OF REHAB FAMILY AND COMMUNITY
SUBPOENASUPPORT ISIMPORTANT BECE
THE HEALTHY BEHAVIOR AND A
LONGER TIME SCALE AND IT'S JUST
A FEW HOURS PEOPLE ARE IN A
CLINIC IN THE STUDY BUT IT HAS
TO BE SUPPORTED BY THE REAL-LIFE
NEEDS SO IT CONNECTS BACK TO
THESE ISSUES.
AND WE HAVE TO GET RESEARCHERS
TO JUMP THERE AND TO REALLY SELL
THE IDEA AND TO SHOW THAT HOE
IMPORTANT THESE THINGS ARE.
IT'S INTUITIVE TO OUR CULTURE TO
DO THAT.
WE HAVE TO TRANSLATE INTO
RESEARCH RIG OR BECAUSE IT'S
SUCH A MISSING AREA OF
REINFORCING IT, ESPECIALLY IN
THE AREA OF PANDEMIC AND PEOPLE
HAVE TO MAKE COMMUNITIES AND WE
HAVE TO SUPPORT PEOPLE MORE
REMOTELY AND IT'S SO INTUITIVE
AND YET WE HAVEN'T TRANSLATED
THAT INTO THE STUDY SO THAT'S
WHAT WE'RE LOOKING AHEAD TO.
>>THANK YOU.
THANK YOU FOR THAT
CLARIFICATION.
I APPRECIATE IT.
>>Chair Dr. Perreault: IN
ADDITION TO THE LACK OF RESEARCH
IN THE COMMUNITY AND FAMILY
AREA, I ALSO NOTICED A BIG
DECREASE IN RESEARCH OVER THE
LIFESPAN.
DO YOU HAVE ANY IN SIGHT WHY
THAT MIGHT BE IF.
>>YEAH, I WAS UNHAPPY ABOUT
THAT TOO.
SO, WE HAD MADE SOME INROADS IN
PEDIATRICS AND AND SOME TARGETED
RFAs THAT MAY HAVE FALLEN OFF
AND THAT CATEGORY HOLDS
THINGS LIKE DOSING AND
REFINEMENTS TO CLINICAL TRIAL
INTERVENTIONS.
SO, THERE MIGHT BE A DROP OFF IN
OTHER NOT NECESSARILY LIFESPAN
BUT THINGS THAT ARE INCLUDED IN
THAT LARGER UMBRELLA.
BUT I AGREE THAT WAS SOMETHING
THAT NICHD IS THE HOME FOR
PEDIATRICS SO WE HAVE TO MAKE
SURE THAT WE'RE BEING A GOOD
VOICE FOR THAT AND ALSO
ACKNOWLEDGING WE NEED TO WORK
WITH NIA BECAUSE 50% OF
DISABILITY DEVELOPS LATER IN
LIFE.
WE SAW THOSE DATA FROM THE TBI
STUDIES SO I THINK THAT WE HAVE
GO AHEAD TARGETS AT BOTH ENDS.
>>I HAVE A SMALL CLARIFICATION
QUESTION.
I KNOW NOTICE THE RO3 PROGRAM
WAS EXTENDED AND THAT'S A
TERRIFIC PROGRAM.
YOU NOTED IN YOUR SLIDE THAT
THIS NEW RFA HAS A LARGER
BUDGET, IS THAT WITH RESPECT TO
THE TRADITION A LOT RO3 OR THE
PREVIOUS EARL' CAREER.
>>Dr. Cruz: THANK YOU, YES,
IT'S LARGELY COMPARED TO A
REGULAR RO3 SO I DON'T WANT
PEOPLE TO BE TURNED OFF BY O.
IT'S NOT GOING TO BE ENOUGH
MONEY FOR ME TO DO WHAT I NEED
SO -- BUT WE'VE HAD THAT LARGER
BUDGET SINCE THE BEGINNING.
>>Chair Dr. Perreault: OK,
GREAT.
WE HAVE ANOTHER QUESTION.
>>THANK YOU, ERIC.
JUST WANTED TO OFFER SUPPORT,
THERESA.
THE CONCEPT THINKING ABOUT
SOMETHING DISRUPTIVE RELATED TO
THE CONCEPT OF ABLEISM AND
RAISING AWARENESS ABOUT ABLEISM
ACROSS NIH WOULD BE REALLY
DISRUPTIVE AND ALSO IN THE BEST
OF WAYS SO I WANT TO SUPPORT
THAT AND TO SAY I THINK WE ON
THIS ADVISORY BOARD YOU BEHIND
YOU, WHATEVER WE CAN DO TO OFFER
ASSISTANCE ON THAT AND IN TERMS
OF THINKING ABOUT SPEAKERS, BOTH
FROM WITHIN THE MEDICAL AND
SCIENTIFIC COMMUNITY BUT ALSO
THE BROADER DISABILITY COMMUNITY
AND SO MUCH OF IT STARTS WITH
MODERN DEF NIXES OF DISABILITY
WE SILO OURSELVES WITH OUTDATED
DEFINITION AND WHEN WE THINK
ABOUT OUR THINKING TO UNDERSTAND
THE DISABILITY IMPACTS 25% OF
POPULATION IT STARTS TO REFRAME
THINGS IN A TOTALLY DIFFERENT
WAYS AND MAKE THE DISCUSSION
AROUND ABLEISM SOMETHING THAT
REALLY RAISES ALL BOATS OR ALL
SHIPS IN UNDERSTANDING THAT WHEN
WE THINK ABOUT DISABILITY
INCLUSION, IN RESEARCH
RECRUITMENT AND HOW WE PLAN OUR
STUDIES, YOU KNOW, ACROSS THE
BOARD AND IT HELPS US TO DO OUR
WORK BETTER.
I WANT TO BE RECORD SUPPORTING
THAT CONCEPT AND IT'S IMPORTANT
NOW IS THE RIGHT TIME BECAUSE OF
INCREASED CULTURAL AWARENESS
AROUND ABLEISM IN THE DEFI
CONVERSATION TO THANK YOU FOR
YOUR ADVOCACY AND I SUPPORTS
THOSE EFFORTS.
>>Dr. Cruz: THANK YOU.
CHERI.
I'M EXCITED ABOUT THE ADVISORY
COMMITTEE TO THE DIRECTOR WILL
BE HEARING ABOUT IT AND I'M
EXCITED IT'S INCORPORATED IN
DEIA STRATEGIC PLANS AND THAT'S
ANOTHER PLACE WHERE WE'VE GOT IT
AND NCMRR IS A SMALL PART BUT
WE'RE LOUD.
I WILL SAY.
SO, GREAT, GREAT COLLEAGUES AND
ACROSS NIH AND YOU CAN'T LOOK AT
THE WORK THAT PUT OUT RECENTLY
AND NOT WANT TO REACT TO THAT.
SO, THANK YOU.
>>GREAT.
THANK YOU.
DO WE HAVE ANY OTHER QUESTIONS?
I'D LIKE TO THANK YOU FOR A
NOISE OVER VOW.
I'D LIKE TO HAND THE THERE WERE
OVER TO RALPH, WHO WILL
INTRODUCE OUR NEXT SESSION.
>>OK, SO AS WE HEAD INTO THE
FINAL SESSION BEFORE OUR
MID-AFTERNOON BREAK.
I WANTED TO CONNECT THE DOTS.
IT'S A TIME WHERE WE CAN ALSO
APPRECIATE, WE VERY MUCH
APPRECIATE THERESA'S LEADERSHIP
AND GETTING OUT THERE IN SO MANY
DIFFERENT DOMAINS.
THE ENERGY AND INTELLIGENCE IS
REALLY HELPED OUR CENTER SO IT'S
OUR CHANCE TO PUBLIC PUBLICLY R
AND LET HER KNOW HOW MUCH WE
APPRECIATE HER.
IT TURNS OUT WITHIN THE COURSE
OF THIS MEETING, WE'RE GOING
CONNECT SOME MORE OF THOSE DOTS
SO WE'LL TALK ABOUT THE STRIVE
ACTION PLAN RIGHT AFTER LUNCH
WHICH IS TO PROMOTE DIVERSITY
AND WE'LL HAVE A VERY ROBUST
DISCUSSION ON INFRASTRUCTURE AND
THAT IS A VERY LONGSTANDING
PROGRAM IN OUR CENTER AND WE
WANT TO SEE WORDS GOING FROM
HERE AND IT WILL REPORT BACK
FROM THE WORKING GROUP AND WE
APPRECIATE THEIR EFFORTS AND
WE'LL HAVE A TALK ON STAKEHOLDER
ENGAGEMENT.
WHOA RECRUITED JENNIFER FRENCH
TO TALK ABOUT STAKEHOLDER
ENGAGEMENT AND LIVED EXPERIENCE
AND WE'RE GOING TO HAVE FINISH
THE AFTERNOON WITH A RESEARCH
TALK AND COGNITIVE REHAB AND
EVEN TOMORROW, WE'LL AND HOW
THEY SUPPORT SOME OF THE
RESEARCH AND AND DISCUSSION ON
GLOBAL HEALTH AND THE WORLD
DISABILITY DAY.
WALTER WILL GIVE US AN UPDATE
FROM THAT AND SO WE'LL PAN WAY
BACK AT THAT LEVEL AFTER THE
TUESDAY BREAK, WE'RE GOING TO
HAVE A SESSION ON TELE REHAB.
THERESA ALLUDED TO THE FACT THAT
WE'RE CHANGING, ESPECIALLY WITH
THE PANDEMIC, TO SUPPORT PEOPLE
MORE DIVERSE ENVIRONMENT AND
JEREMY WILLROY WILL TALK ABOUT
HOW YOU PROMOTE EXERCISE AND
SUPPORT PEOPLE OUT IN THEIR
COMMUNITY THROUGH TELE REHAB
APPROACHES SO WE'LL COME BACK TO
SOME OF THOSE SAME TOPICS.
SO, THE NEXT SESSION YOUR
COLLEAGUE, JOSE CONTRERAS-VIDAL,
PEPE, HAS DONE US A REAL FAVOR.
THE NICHD COUNCIL MEETS THREE
SEEMS A YEAR AND THEY HAVE TO
CARRY A LOT OF HEAVY LIFTING IN
TERMS OF ACTUAL FUNDING
DECISIONS AND SOME OF THE MORE
PROCESSES THAT ARE VERY MUCH A
PART OF OUR GRANT FUNDING.
WE ALWAYS ARE ABLE TO PLUCK ONE
PERSON FROM THE ADVISORY BOARD
TO SEARCH AS A LIAISON TO THE
COUNCIL WHICH MEETS THREE TIMES
A YEAR AND IT'S A MIXED BAG
BECAUSE WHOEVER DOES THAT, GETS
TO HEAR SOME BROADER
CONVERSATIONS, VERY MUCH
REMINISCENT OF WHAT YOU HEARD
FROM Dr. BIANCHI, THE BROADER
PERSPECTIVE OF NICHD, WHICH IS A
DIVERSE INSTITUTE AS YOU HEARD
AND HAS TO CARRY WATER FOR US
AND DO A LOT OF WORK IN TERMS OF
OUR OWN FUNDING INITIATIVES AND
SO WE VERY MUCH APPRECIATE THAT
PEPE HAS DONE THIS FOR US.
HE IS WORKED WITH US AND PUT THE
EXTRA TIME IN AND I WANTED TO
GIVE HIM A CHANCE TO TALK ABOUT
HIS PERSPECTIVES OF BEING THE
LIAISON TO THE COUNCIL, WHAT HE
HEARD, HIS REFLECTIONS ON IF AND
PUBLICLY THANK HIM FOR DOING
THOSE EFFORTS.
THE THERE WERE IS YOURS.
>>THANK YOU, IT'S BEEN AN
ANYWHERE.
WITH OUR COLLEAGUE AND FRIENDS
LAST YEAR WE HAD THE OPPORTUNITY
TO SERVE IN THIS POSITION.
AS YOU KNOW, THIS IS BEEN TWO
DAYS SESSIONS AND WE HAVE ONE IN
MAY AND ANOTHER IN SEPTEMBER FOR
THE JUNE AND OCTOBER COUNCIL
MEETINGS AND IT'S BEEN A GREAT
LEARNING EXPERIENCE FOR ME AND A
SOURCE OF INFORMATION THAT HAS
ALREADY EXPANDED MY VIEW OF THE
INSTITUTE AND WHAT WE DO HERE.
BEFORE I GIVE YOU MY TAKE ON
THIS, I WOULD LIKE TO
ACKNOWLEDGE Dr. RALPH SERVING
AS A MENTOR AND COACH FOR ME.
GUIDING ME ON THE ACTIVITIES
THAT I DO IN THE COUNCIL.
SO THANK YOU, RALPH, FOR THAT.
AND I KNOW THAT I CAN REACH YOU
ANY TIME SO I REALLY APPRECIATE
THAT.
SO, THE FIRST THING I WANT TO
SAY IS THAT IT'S INCREDIBLE THE
AMOUNT OF WORK THE NIH, THE
STAFF PUTS INTO THESE MEETING,
SOMETHING THAT I CAME TO REALIZE
VERY SOON ON THIS PARTICULAR
MEETING, AND FOR THOSE AT THE
COUNCIL LEVEL.
THERE'S A LOT THAT NEEDS TO BE
DONE FOR ANY OF THESE MEETINGS
AND THAT FACILITATES MY WORK TOO
SO I REALLY APPRECIATE THAT.
KUDOS TO EVERYONE, STAFF, ALL
THE WAY TO THE DIRECTOR.
SO, IN ADDITION TO THE ESTATE OF
THE INSTITUTE, IN WE GET EACH OF
THESE MEETINGS, WE LEARN ABOUT
INITIATIVES, RIGHT, SOME OF THE
INITIATIVES THAT HAVE BEEN
PARTICUPARTICULARLY, THE INITIAS
THAT I WILL HEAR MORE THIS
AFTERNOON OR TOMORROW AND FROM
Dr. CERNICH.
IT GIVES ME ANOTHER PERSPECTIVE.
BEING A MINORITY FROM A MINORITY
GROUP, I'M HAPPY TO SEE THERE
ARE EFFORTS BEING PUT TOGETHER
ON THESE AND I KNOW THAT WITH
THE PANDEMIC, IT HAS AFFECTED
EVERYONE BUT WITHIN THE
INSTITUTE BUT ALSO FOR
RESEARCHERS LIKE MYSELF THAT ARE
BEING SUPPORTED BY NIH.
IT'S VERY IMPORTANT TO
UNDERSTAND ALSO WHERE THE
PROPORTIONAL EFFECTS OF COVID ON
WOMEN AND MINORITIES POSTA MOSTN
RESEARCH.
ANOTHER THING THAT WAS VERY
INTERESTING TO ME IS LEARNING
ABOUT THE CONCEPT REVIEWS,
RIGHT.
SO THESE ARE REQUESTS FOR
APPLICATIONS WITH SOME SPECIFIC
FUNDS AND A REVIEW BY US AND
THEY ARE REALLY MADE TO ADDRESS
A SPECIFIC KNOWLEDGE GAP SO
WE'VE BEEN INVOLVED IN SEVERAL
OF THESE CONCEPT REVIEWS AND TO
MENTION ONE THAT ALL OF THEM ARE
REPORT NUMBER ONE THAT WAS
HIGHLIGHTED IS A CONCEPT REVIEW
AND OPPORTUNITIES FOR ADVANCING
REINTEGRATION OF RESEARCH BY
USING EMERGING TECHNOLOGIES THAT
WE TAPPED ON OUR OWN BODY, YOU
KNOW, GROWTH PATHWAYS AND
MECHANISMS AND IT JUST
HIGHLIGHTS THE INNOVATION AND
THE THINKING AHEAD, RIGHT, IN
TERMS OF HOW WE CAN USE THESE
CONCEPT REVIEWS TO PROMOTE
RESEARCH.
I AM ALSO INVOLVED IN
RECOGNIZING P.I.s IN ALWAYS
AND NIH AND SERVICE AND THAT I
HAVE OR STRONG PRODUCTIVITY AND
PREPARED THOSE AND PUT TOGETHER
THIS PROPOSAL TO RECOGNIZE
P.I.s.
AND I THINK THAT MANY BENEFITS,
THIS COMMUNITY AND SOMEWHERE
AROUND MENTIONED I ENJOYED THE
VOICE OF PARTICIPANT WHERE THEY
BRING A STAKEHOLDER COMMUNITY
MEMBER AND THEY SPEAK ABOUT
THEIR CHALLENGE AND ABOUT THEIR
NEEDS AND ABOUT PRIORITIES IN
PEOPLE WITH INTELLECTUAL OR
PHYSICAL DISABILITIES SO I THINK
IT'S VERY INFORMATIVE AND I WILL
HOPE THAT THIS INTERVIEWS WILL
BE AVAILABLE TO A WIDER
AUDIENCE, RIGHT, PERHAPS
BRINGING THEM ON THE WEBSITE IN
A WAY THAT IS EASY TO SEE OR IN
OTHER WAYS AND IMPORTANT TO
BRING THE POINT TO THE PUBLIC
AND TO US.
COULD I ESSENTIALINTEGRATE TO MD
THIS IS A REALLY GREAT
OPPORTUNITY FOR ALL OF US AND TO
HARNESS THIS INFORMATION AND TO
HELP, YOU KNOW, THE NEXT
GENERATION OF RESEARCHERS COMING
FROM OUR LABS.
SO, BEING ON TWO COUNCIL
MEETINGS AND AGAIN IN MAY AND IN
SEPTEMBER, AND SO I'M LOOKING
FORWARD TO FUTURE MEETINGS AND
PERHAPS IN-PERSON, I THINK IT'S
ALSO IMPORTANT THAT WE GET TO
HAVE THE PERSONAL INTERACTION
AND EXCHANGE IDEAS AND
CHALLENGES AND MORE TIMEFRAME.
I JUST WANT TO CONCLUDE BY
SAYING BEFORE WE GO TO BREAK,
BECAUSE I KNOW I'M (INAUDIBLE)
IS THAT I'VE BEEN REALLY
IMPRESSED BY THE CAREFUL AND
EXPENSIVE WORD THAT EVERYBODY
PUTS ON THESE COMMITTEES AND ON
THE COUNCIL AND NAMRR AND IT
JUST SPEAKS TO THE DEDICATION
AND EFFORTS OF EVERYONE.
SO I WANT TO SAY THANK YOU TO
ALL THE STAFF FOR MAKING OUR
LIVES A LOT EASIER.
AND WITH THAT, WE'RE GOING TO
STOP HERE AND IF THERE ARE ANY
QUESTIONS, I'M HAPPY TO ANSWER
THEM.
>>THANK YOU FOR THAT
INTRODUCTION AND JUST SO PEOPLE
KNOW, THE COUNCIL, THE NICHD
ADVISORY COUNCIL IS THE SECOND
LEVEL OF REVIEW SO IT GETS
PEER-REVIEWED AND THE FINAL
LEVEL OF DISCUSSION FOR FUNDING
IS THE LARGER COUNCIL AND SO, I
SHOULD ALSO MENTION THAT OUR
CENTER IS ALSO REPRESENTATIVE,
NOT ONLY PEPE IS THERE CARRYING
THE WATER FOR US BUT WE HAVE
KATHERINE LANG AND SHE'S A
STRONG ADVOCATE FOR
REHABILITATION RESEARCH AND
WE'RE ALSO FORTUNATE THAT TWO OF
THE EX-OFFICIO MEMBERS, PATRICIA
DORN FROM THE V.A. AND MELISSA
MILLER FROM DOD HELPED REPRESENT
OUR INTERESTS.
ALTHOUGH NICHD IS A VERY BROAD
INSTITUTE, A LOT OF DIVERSE
INTERESTS AND WE ARE WELL
REPRESENTED ON THE COUNCIL.
SO WE WELCOME ANY QUESTIONS THAT
YOU HAVE FOR PEPE OR ANY
COMMENTS?
>>IF I COULD JUST ADD MY
GRATITUDE TO PEPE FOR HIS
SERVICE AND MAKE SURE WE DID
ACKNOWLEDGE TRISHA DORN AS HER
JOB.
SHE GETS TO COME TO MANY, MANY
MEETINGS WITH THE NIH AND HAS
FOR A LONG TIME AND HAS BEEN A
HUGE SUPPORT FOR US BOTH AT THE
ADVISORY BOARD MEETING HERE AND
ALSO AT COUNCIL AND WE COULDN'T
DO ANY OF THE THINGS WE DO
WITHOUT THEIR SUPPORT AND SO THK
YOU SO MUCH.
PEPE MENTIONED THE LIMB
REFORMATION AND IT WAS LAST WEEK
AND WE WORKED WITH THEM A COUPLE
YEARS AGO ON THE WORKSHOP THAT
INFORMED THAT RFA.
SO, DUE DATE IN JULY AND YOU GOT
PLENTY OF TIME TO WORK ON YOUR
APPLICATION AND I'LL BE QUIET
NOW.
THANK YOU.
IF THERE ARE NO FURTHER COMMENTS
TO PEPE WE WANTED YOU TO
UNDERSTAND THE MORE ABOUT THE
INNER WORKINGS OF NICHD AND
APPRECIATE HIM AND PEPE IS A
GOOD PERSON TO SERVE ON THIS
BECAUSE HE HAS A BROAD EX EXPERE
AND HE IS WILLING TO DO HIS
HOMEWORK FOR THIS.
ERIC, I'LL TURN IT OVER TO YOU
TO SEND US OFF FOR OUR BREAK?
GREAT.
THANK YOU.
SO, WE HAVE A BREAK FOR JUST
UNDER AN HOUR AND WE'LL RETURN
AT 1:00 EASTERN TIME AND PLEASE
LEAVE YOURSELVES SIGNED NO ZOOM.
YOU CAN TURN OFF YOUR CAMERA BUT
MAKE SURE THERE ARE NO CONNECT
PROBLEMS COMING BACK SO WE LOOK
FORWARD TO SEEING YOU SOON.
WELCOME BACK, EVERYONE.
I HOPE YOU HAD A NICE LUNCH OR
LATE COFFEE BREAK ON THE WEST
COAST.
IT IS MY PLEASURE TO INTRODUCE
DR. ALISON CERNICH, WHO'S THE
DEPUTY DIRECTOR OF NICHD.
ALISON IS GOING TO GIVE US AN
UPDATE ON THE STRIVE ACTION PLAN
AND NICHD DIVERSITY ACTIVITIES.
GO AHEAD, ALISON.
>>I SHOULD ADD THAT ALISON WAS
THE FORMER DIRECTOR OF THE
CENTER, SO WE HAVE THAT
CONNECTION AS WELL AND IT GREAT
TO SEE HER BACK.
>>WELL, AND I'M SUPER GRATEFUL
TO BE BACK.
THANK YOU ALL FOR GIVING ME THIS
OPPORTUNITY.
AND IT'S GREAT TO SEE SO MANY
FAMILIAR FACES, SOME OF WHOM
I'VE KNOWN FOR A REALLY LONG
TIME.
AND SO JUST REALLY THRILLED TO
BE HERE.
I WILL BRING UP MY SLIDES AND
TRY TO GO THROUGH -- SO I WANT
TO TALK THROUGH OUR STRATEGIES
TO ENRICH INCLUSION AND ACHIEVE
EQUITY ACTION PLAN AND SOME OF
THE OTHER ACTIVITIES WE HAVE
ONGOING IN DIVERSITY, EQUITY AND
INCLUSION AND ACCESSIBILITY HERE
AT NIH JUST TO GIVE YOU THE
BACKDROP OF WHAT WE'VE BEEN
WORKING ON.
I'M CURRENTLY THE ACTING
DIRECTOR OF OUR OFFICE OF HEALTH
EQUITY WITH THE DEPARTURE OF DRE
THE DEPUTY DIRECTOR OF THE
DIVISION OF EXTRAMURAL
ACTIVITIES OVER AT THE NATIONAL
INSTITUTE OF MENTAL HEALTH AND
WE'RE VERY EXCITED TO HAVE HER
BACK IN THE EXTRAMURAL COMMUNITY
BUT HAVE DEFINITELY MISSED HER
THIS YEAR.
SO WITH THAT, SO I'LL GIVE YOU
AN OVERVIEW FIRST OF THE NIH
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY ACTIVITIES.
AND SO JUST TO LET YOU KNOW THAT
WE ARE VERY AWARE OF AND ENGAGED
IN THE ACTIVITIES ACROSS THE
NIH, SO WE LAUNCHED STRIVE IN
NOVEMBER OF 2020, AND THIS
INITIATIVE WAS AN INTERNAL NICHD
EFFORT, AND WE STARTED
DEVELOPING THAT IN MAY OF 2020,
AFTER THE MURDER OF GEORGE
FLOYD, AS WELL AS A NUMBER OF
THE OTHER SHOOTINGS THAT
INVOLVED ASIAN AMERICAN PACIFIC
ISLANDER POPULATIONS, AND A
NUMBER OF THINGS THAT WENT ON
DUE TO BLACK LIVES MATTER
MOVEMENT IN SUMMER OF 2020, AND
WITH THE BACKDROP OF THE
PANDEMIC AND OUR WORK, NIH THEN
LAUNCHED, AFTER JANUARY 2021,
THE UNITE INITIATIVE.
AND UNITE DOES NOT STAND FOR
ANYTHING.
IT IS THE RARE GOVERNMENT
ACRONYM IN THAT IT JUST DOESN'T
STAND FOR ANYTHING, BUT THERE
ARE A NUMBER OF TEAMS UNDER
UNITE FIVE TEAMS THAT CORRESPOND
TO EACH OF THE LETTERS THAT ARE
WORKING ON VARIOUS ASPECTS OF
RACIAL EQUITY ACROSS THE NIH.
UNDER UNITE, AND ALSO FOLLOWING
THE EXECUTIVE ORDER ON RACIAL
EQUITY, WHICH REQUIRED ALL OF
THE FEDERAL AGENCIES TO BEGIN TO
ADDRESS RACIAL EQUITY BUT ALSO
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY, WE WERE ASKED BY
THE NIH TO PUT TOGETHER RACIAL
AND ETHNIC EQUITY PLANS.
SO YOU'LL SEE THAT IN NOVEMBER
OF 2021, THAT INITIATIVE WAS
LAUNCHED.
AND WE WERE ASKED TO PROVIDE
PLANS TO THE NIH FOR INTERNAL
ACTIVITIES THAT WE WOULD
UNDERTAKE TO ENSURE THAT WE HAD
RACIAL AND ETHNIC EQUITY IN OUR
WORKFORCE.
I WILL SAY THIS ADDS ON TO
SOMETHING THAT'S REQUIRED UNDER
THE EEOC, WHICH IS WHAT WE CALL
THE MANDATORY DIRECTIVE 715,
UNDER WHICH WE DO HAVE TO DO
THESE TYPES OF PLANS EVERY YEAR.
THE ROOT PLANS ARE IN ADDITION
TO THAT AND REALLY LOOK AT A
FRAMEWORK THAT LOOKS AT
SYSTEMICALLY WHAT OUR WORKFORCE
STRUCTURES AND SYSTEMS ARE TO
DISMANTLE ANY RACIAL AND ETHNIC
DISPARITIES AND ENHANCE THE
DIVERSITY OF THE WORKFORCE.
NOW GIVEN THAT NICHD HAD ALREADY
STARTED WITH STRIVE, STRIVE WAS
NOT JUST AROUND EQUITY FOR
RACIAL AND ETHNIC GROUPS.
WE REALLY DID TRY TO TAKE REALLY
BASED ON OUR MISSION AND THE
WORK THAT WE DO AN
INTERSECTIONAL APPROACH TO THIS.
SO WE REALLY DID TRY TO CONSIDER
NOT ONLY RACIAL AND ETHNIC
IDENTITY, WE ALSO TRIED TO TAKE
INTO ACCOUNT GENDER IDENTITY, AS
WELL AS DISABILITY.
SO WE WERE THINKING VERY BROADLY
TO BEGIN WITH, SIMPLY BECAUSE WE
KNEW THAT PEOPLE WERE NOT
SILOED, RIGHT, JUST BY THEIR
RACIAL AND ETHNIC STATUS, BUT WE
REALLY HAD TO THINK ABOUT THIS
FROM THE PERSPECTIVE OF THE
WHOLE PERSON.
SO WE WROTE OUR RACIAL AND
ETHNIC EQUITY PLAN REALLY
SOMEWHAT FROM THAT LENS AS WELL,
AND SO WHILE WE ARE LOOKING AT
STRUCTURES AND SYSTEMS, WE ARE
LOOKING AT THEM A LITTLE BIT
MORE HOLISTICALLY.
SO WE HAVE CREATED THAT, WE
FINISHED THAT IN MARCH OF 2022,
IT WENT THROUGH A NUMBER OF
PIECES OF REVIEW AND WAS
PUBLISHED ON THE INTRANET AT NIH
BECAUSE IT'S AN INTERNAL
WORKFORCE INITIATIVE THAT WAS
PUBLISHED FOR OTHER ICs TO
TALK A LOOK AT IN JULY OF 2022,
AND THEN WE HAD TO PROVIDE AN
UPDATE IN SEPTEMBER OF 2022 ON
PROGRESS ON OUR ACTIVITIES.
WE'LL HAVE TO DO THAT ANNUALLY,
IN ADDITION TO THE WORK THAT WE
DO ON THE DIRECTIVE 715.
THE OTHER THING THAT UNITE HAS
BEEN DOING, AND I'VE PUT SOME
LINKS IN SO YOU CAN SEE THIS,
THEY HAVE DONE A PROGRESS
REPORT, UNITE DOES NOT ONLY
INVOLVE THE INTERNAL WORKFORCE,
IT ALSO INVOLVES FUNDING
OPPORTUNITIES AND THE TRAINING
ECOSYSTEM.
AND SO THEY HIGHLIGHTED IN THEIR
PROGRESS REPORT, AND I HAVE IN
THE APPENDIX OF THESE SLIDES, A
SUMMARY THAT'S ALSO IN THEIR
EXECUTIVE SUMMARY, ABOUT THEIR
FUNDING OF HEALTH DISPARITIES
AND MINORITY HEALTH RESEARCH.
THEIR EFFORTS TO PROMOTE EQUITY
IN THE BIOMEDICAL RESEARCH
ECOSYSTEM, AND THAT INCLUDES NEW
TRAINING PROGRAMS AND
MENTORSHIPS, PROMOTING EQUITY IN
THE INTERNAL WORKFORCE AND
THAT'S WHERE YOU SEE THE RACIAL
AND ETHNIC EQUITY PLANS COME IN.
AND ALSO TO IMPROVE THE ACCURACY
AND TRANSPARENCY OF RACIAL AND
ETHNIC EQUITY DATA, AND THAT
INCLUDES NOT ONLY OUR EMPLOYEE
DATA, BUT DATA ON OUR GRANTEES,
AS WELL AS INCLAWT INCLUSION OFE
PARTICIPANTS IN OUR RESEARCH.
WE ALSO WERE ASKED TO, BY THE
ADMINISTRATION, CREATE A
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY STRATEGIC PLAN.
THIS IS BEING COORDINATED WITH
THE DEPARTMENT OF HEALTH AND
HUMAN SERVICES, AND THIS IS A
LARGER STRATEGIC PLAN THAT IS
CURRENTLY RECEIVING PUBLIC
INPUT, SO THERE IS AN RFI OUT
NOW, AND THE FINAL PLAN, WE
THINK SHOULD BE PUBLISHED IN
SPRING OF 2023 FROM NICHD WITH
AN ACTIVE CONTRIBUTOR TO THE
STRATEGIC PLAN, AND I DO WANT TO
HIGHLIGHT THAT THERESA CRUZ AND
OTHERS HAVE BEEN REALLY ACTIVE
IN ENSURING THAT ACCESSIBILITY
AND DISABILITY IS VERY MUCH IN
CONSIDERATION AS WE THINK ABOUT
BEING EQUITABLE AND INCLUSIVE IN
ALL OF OUR WORK.
SO I WANT TO THANK HER AND HER
TEAM FOR ALL THAT THEY'VE DONE.
I THINK IT HAS BEEN A LOT OF
WORK ACROSS, AND TERESA AND A
NUMBER OF THE STAFF ON THE TEAM
HAVE BEEN VERY ACTIVE, NOT ONLY
IN THE DEIA STRATEGIC PLAN, BUT
ALSO IN DEIA WORKING GROUPS FOR
THE INTERNAL WORKFORCE, AS WELL
AS IN STRIVE.
SO I WANT TO THANK THERESA AND
HER TEAM FOR THEIR LEADERSHIP IN
THIS AREA.
I WANT TO JUST GO BACK ONE
BEFORE I GO TO NICHD STRIVE.
I THINK A NUMBER OF YOU ARE
AWARE THAT THIS MEETS ADVISORY
COUNCIL TO THE DIRECTOR OF NIH
WILL INCLUDE A REPORT FROM THE
WORKING GROUP ON DISABILITY, AND
THIS IS A TEAM THAT HAS PUT
TOGETHER AND IT'S REALLY AN
ILLUSTRIOUS GROUP OF YOUR
COLLEAGUES, HAVE PUT TOGETHER
RECOMMENDATIONS FOR THE NIH ON
HOW TO REALLY BETTER INCLUDE
PEOPLE WITH DISABILITY, NOT ONLY
IN OUR INTERNAL WORKFORCE, BUT
ALSO IN OUR RESEARCH, AS WELL AS
IN OUR EXTRAMURAL WORKFORCE.
YOU KNOW, THE DATE TA ON
DISABILITY AND SCIENTISTS --
WE'VE TALKED ABOUT IN THIS BOARD
MEETING IN FACT WHEN I WAS STILL
DIRECTOR ABOUT HOW TO BETTER
INCLUDE PEOPLE WITH DISABILITY
IN OUR WORKFORCE, ESPECIALLY IN
OUR FUNDED INVESTIGATOR
WORKFORCE, AND I THINK -- I
REALLY DO, I GOT A PREVIEW OF
THE REPORT AND RECOMMENDATIONS
THIS MORNING.
SO I WOULD REALLY URGE YOU ALL
TO BE PART OF THAT MEETING ON
FRIDAY, BECAUSE I THINK THEIR
RECOMMENDATIONS REALLY WILL BE A
WAY TO CATALYZE BOTH RESEARCH ON
DISABILITY IN THE SOCIAL MODEL,
NOT IN THE MEDICAL MODEL, BUT
THEY ALSO MADE SOME POWERFUL
RECOMMENDATIONS ABOUT HOW MUCH
WE REALLY LACK IN INFORMATION,
BOTH ABOUT OUR PARTICIPANTS WITH
DISABILITY AS WELL AS IN OUR
WORKFORCE WITH DISABILITY, BOTH
INTERNALLY AND EXTERNALLY AND
SOME OF THE REASONS FOR THAT.
SO I REALLY DO APPRECIATE THE
COLLEAGUES THAT WE HAVE WHO HAVE
BEEN PARTICIPATING IN THAT WORK
GROUP, AS WELL AS, AGAIN, THE
LEADERSHIP OF THERESA AND ONE OF
OUR OTHER COLLEAGUES IN NICHD,
DR. COUP THEMANNKOEPKE.
SO I'LL MOVE TO STRIVE.
THE MISSION OF STRIVE, WE PUT
TOGETHER A CHARTER FOR THAT AND
WHAT WE WERE ASKING OUR TEAM DO
HERE AT NICHD, WE WANTED OUR
COLLEAGUES TO HELP US DEVELOP
THREE ACTION PLA PLANS AND THESE
REALLY WELL WITH WHAT CAME UP
WITH SOME OF THE OTHER
REQUIREMENTS.
SO WE ACTUALLY HAD GOTTEN KIND
OF A HEAD START.
THIS WAS TO HIRE, TRAIN, RETAIN
AND PROMOTE DIVERSE TALENT
WITHIN NICHD, HOW COULD WE DO
THAT BETTER, HOW TO TRAIN AND
SUPPORT THE CAREERS OF DIVERSE
SCIENTIFIC TALENT IN THE
EXTRAMURAL COMMUNITY AND HOW TO
PROPOSE HEALTH DISPARITIES
RESEARCH PRIORITIES AND
DIFFERENT APPROACHES TO MITIGATE
KEY DRIVERS OF HEALTH
DISPARITIES.
SO THESE ARE NOT FINAL BUT WE'VE
ALSO TRIED TO MAKE THIS COMPORT
TO THE NICHD STRATEGIC PLAN AND
TO THE LARGER NIH EFFORT SO THAT
WHEN WE'RE NOT DUPLICATING,
WE'RE SORT OF BRINGING THINGS
TOGETHER, BUT TOO, THAT THERE
WILL BE AN ACCOUNTABILITY AND
IMPLEMENTATION STRUCTURE FOR THE
RECOMMENDATION.
SO THESE ARE THE THREE CAN
SUBCOMMITTEES.
IS SO OUR BROAD ACTION PLAN, WE
REALLY INCORPORATED A NUMBER OF
GOALS HERE.
SO WHAT WE WANTED TO DO FOR
DEIA, WE HAVE A NUMBER OF
STRATEGIC OBJECTIVES UNDER THIS.
NUMBER ONE IS WE REALLY DO NEED
TO INCREASE THE COLLECTION AND
USE OF DATA PERTAINING TO DEIA,
IF WE NEED TO MONITOR PROGRESS,
WE NEED TO BE ABLE TO LOOK AT
WHO WE HAVE IN OUR WORKFORCE AND
HOW WHAT WE DO CHANGES OUR
DIVERSITY, BOTH IN TERMS OF WHO
WE HAVE IN THE ORGANIZATION AS
WELL AS WHO WE ARE DEVELOPING,
RETAINING, PROMOTING AND MAKING
SURE WE'RE ADDRESSING BIASES AND
ANY SYSTEMATIC OR STRUCTURAL
BARRIERS TO THAT.
WE'RE ALSO THINKING ABOUT WHAT
IS GOING TO BE IN OUR TRAINING
CURRICULUM SO THAT WE CAN HAVE
STAFF THAT ARE EQUIPPED TO
CONTRIBUTE TO AN ACCESSIBLE AND
INCLUSIVE WORK ENVIRONMENT.
WE'RE LOOKING AT DIFFERENTIAL
TRAININGS FOR OUR STAFF AND OUR
SUPERVISORS, THINKING ABOUT HOW
TO MAKE PEOPLE AWARE OF THE
SCIENCE THAT WE DO THAT ENHANCES
DEIA IN THE COMMUNITY, BUT WE'RE
ALSO THINKING ABOUT HOW TO
REALLY CREATE A RESPECTFUL,
CIVIL AND INCLUSIVE WORKFORCE.
WE'VE BEEN LOOKING AT RESEARCH
AND EVIDENCE ON WHAT TRAININGS
WORK AND WHAT TRAININGS DON'T.
WE'VE BEEN PILOTING SOME NEW
TRAININGS IN THE INSTITUTE TO
SEE HOW PEOPLE ARE RECEIVING
THEM, AND THEN WE'LL START
THINKING ABOUT THIS TRAINING
CURRICULUM MOVING FORWARD.
WITH RESPECT TO SCIENTIFIC
WORKFORCE DIVERSITY, AGAIN, WE
HAVE REALLY TRIED TO UNDERTAKE A
FAIRLY SUBSTANTIVE EFFORT IN
TERMS OF OUR TRAINING EFFORTS
AND OUR WORKFORCE DIVERSITY.
AND WHAT WE'RE LEARNING IS, BOTH
HERE AND IN OUR FUNDED
INVESTIGATORS, THERE'S A REAL
PAUCITY OF REPORTING OF
DISABILITY, AND WE UNDERSTAND
THAT THERE ARE SOME REASONS FOR
THAT.
WE ONLY HAVE ABOUT 2% OF PEOPLE
WHO RECEIVE TRAINING GRANTS OR
WHO RECEIVE RESEARCH PROJECT
GRANT FUNDING IN THE NIH
REPORTING A DISABILITY.
BUT THERE'S A LOT OF MISSING
DATA.
AND SO A MAJORITY OF PEOPLE
EITHER DECIDE NOT TO REPORT OR
JUST DON'T ANSWER THE QUESTION
AT ALL.
AND WHILE WE UNDERSTAND THAT
DEMOGRAPHIC INFORMATION IS
OPTIONAL, IT DOES HELP US
UNDERSTAND THE MAKEUP OF OUR
WORKFORCE.
SO WE REALLY NEED TO BETTER
UNDERSTAND THIS SO THAT WE CAN
POTENTIALLY THINK ABOUT OUR
OUTREACH AND TRAINING EFFORT AND
GETTING MORE PEOPLE INTO OUR
WORKFORCE PIPELINE.
I THINK THE OTHER IS THAT THERE
ARE POLICIES AND PRACTICES THAT
WE HAVE IN OUR TRAINING PROGRAM,
EITHER THAT WE'RE NOT REQUIRING
CERTAIN TYPES OF DIVERSITY PLANS
OR WE'RE NOT ASKING PEOPLE FOR
DEMOGRAPHIC INFORMATION ON WHO
THEY'RE TRAINING AND HOW THEIR
OUTREACH IS PROGRESSING, SO
WE'RE LOOKING AT MODEL POLICIES
OR MODEL PRACTICES ACROSS THE
NIH AND EVALUATING THOSE FOR
INCLUSION IN OUR TRAINING.
SOLICITATION.
THE OTHER THING THAT WE
RECOGNIZED AS WE WENT THROUGH
THIS IS THAT WE ORIGINALLY
TARGETED OUR EXTRAMURAL
WORKFORCE, BUT THERE ARE A
NUMBER OF THINGS GOING ON IN OUR
INTRAMURAL WORKFORCE.
SO WE ARE NOW WORKING WITH THE
INTRAMURAL PROGRAM TO BETTER
INCORPORATE SOME OF THEIR
POLICIES AND PRACTICES AND WE'VE
ACTUALLY DONE QUITE A BIT AND SO
HAS THE OFFICE OF INTRAMURAL
TRAINING AND EDUCATION ON
MENTORSHIP AND INCLUSIVE
PRACTICES AND ALSO OUTREACH WITH
DIFFERENT COMMUNITIES WHERE WE
CAN BRING IN MORE DIVERSE
SCIENTISTS NOT JUST TO WORK, YOU
KNOW, AND I WANTED TO MAKE IT
CLEAR, WE'RE NOT JUST TALKING
ABOUT PEOPLE COMING IN THAT ARE
WORKING ON, SAY, HEALTH
DISPARITIES RESEARCH, WE REALLY
WANT TO WELCOME THE DIVERSITY OF
VOICES EITHER FROM RACIAL AND
ETHNIC BACKGROUNDS, GENDER
IDENTITY BACKGROUNDS, DISABILITY
BACKGROUNDS, BECAUSE THEY BRING
FRESH PERSPECTIVES AND NEW WAYS
TO LOOK AT THE SCIENCE.
AND THE OTHER THING WE ARE NOW
DOING THROUGH OUR SCIENTIFIC
WORKFORCE DIVERSITY EFFORTS, AND
THIS WAS IN CONSULTATION WITH
THE EQUITY TECHNICAL ASSISTANCE
CENTER IN HHS, WE ARE ALSO
THINKING ABOUT HOW TO ENGAGE
INTERNAL AND EXTERNAL
STAKEHOLDERS TO SEE HOW WE CAN
BETTER INCLUDE PEOPLE AND
WELCOME PEOPLE INTO THE
SCIENTIFIC WORKFORCE, AND THAT
INCLUDES STAKE H STAKEHOLDER OUO
ONE OF THE THINGS WE HAVE DONE
AS A RESULT IS TO THICK THING
ABOUT HOW WE'RE DOING THAT, WHO
WE'RE ENGAGING WITH.
WE WERE ENGAGING WITH THE USUAL
SUSPECTS AND ONE OF THE THINGS
WE ALL KNOW, RIGHT, IS IF WE
CONTINUE TO TRY TO DO THE SAME
THING OVER AND OVER AND EXPECT A
DIFFERENT RESULT, WE ARE NOT
GOING TO SUCCEED.
SO WE'RE THINKING ABOUT HOW WE
BETTER ENGAGE IN OUTREACH WITH
THE COMMUNITY, ESPECIALLY
COMMUNITIES WHERE HISTORICALLY
NICHD HAS NOT DONE AS MUCH TO
SEE HOW WE BETTER ENGAGE AND
TRAIN THIS NEXT GENERATION OF
SCIENTISTS.
AND THEN FINALLY IN HEALTH
DISPARITIES RESEARCH, WE HAVE
TAKEN, AGAIN, A VERY
INTERSECTIONAL VIEW OF THIS.
AND I THINK THE DISABILITY
COMMUNITY AS USUAL WAS VERY FAR
AHEAD AND I THINK OTHERS HAVE
ADOPTED THE SLOGAN OF NOTHING
ABOUT US WITHOUT US.
AND I THINK WE HAVE REALLY
LOOKED AT PROMOTING COMMUNITY
PARTNERED RESEARCH AND THAT
DOESN'T HAVE TO BE ONLY
COMMUNITY-BASED ENGAGED
RESEARCH, DOES NOT HAVE TO BE
COMMUNITY LED RESEARCH BUT
LOOKING AT DIFFERENT MODELS OF
COMMUNITY PARTNER RESEARCH TO
UNDERSTAND HEALTH DISPARITIES,
INCLUDING THE PERSPECTIVE OF THE
COMMUNITY INVOLVED.
WE NEED TO PROMOTE THE INCLUSION
OF POPULATIONS EXPERIENCING
HEALTH DISPARITIES IN ALL NICHD
HUMAN SUBJECTS RESEARCH.
WE'VE TAKEN A LOOK IN OUR
INCLUSION DATA AND SOME OF IT
HAS BEEN SURPRISING TO US,
BECAUSE EVEN IN CONDITIONS WHERE
WE WOULD EXPECT THAT THERE'S A
DIFFERENT MAKEUP OF PARTICIPANTS
BECAUSE OF THE PREPONDERANCE OF
A CONDITION IN THOSE
PARTICIPANTS, FOR EXAMPLE, SOME
NEUROLOGIC HEALTH CONDITION,
WE'RE NOT SEEING THAT
REPRESENTATION.
SO WE HAVE TO THINK ABOUT HOW
WE'RE INCLUDING THOSE
PARTICIPANTS AND HOW WE'RE
CHALLENGING OUR INVESTIGATORS TO
MAKE SURE THAT THEY'RE INCLUDING
THOSE PARTICIPANTS.
AND ALSO AS I'VE SAID MULTIPLE
TIMES, TO INCORPORATE THE
INTERSECTIONALITY OF IDENTITIES
INTO OUR HEALTH DISPARITIES
RESEARCH, WE ARE EXAMINING SOME
TOOLS WITH THAT THE DEPARTMENT
HAS PUT OUT IN TERMS OF HOW TO
ASSESS INTERSECTIONALITY AND HOW
TO ENGAGE WITH INTERSECTIONALITY
IN MIND SO THEY'VE DEVELOPED A
FULL TOOLKIT ON THIS THAT OUR
HEALTH DISPARITIES RESEARCH TEAM
IS TAKING A LOOK AT, BUT WE ALSO
KNOW THAT FOR RESEARCH PURPOSES,
WE NEED TO DO A BETTER JOB OF
REALLY MEASURING NOT JUST PEOPLE
IN SILOED DIMENSIONS BUT AS
WHOLE.
SO THESE ARE THE THINGS THAT
WE'RE WORKING ON NOW AS AN
ORGANIZATION.
I DON'T JUST WANT TO POINT OUT
THAT THIS IS NOT WORK I'VE LED
ALONE, TEAM WORK REALLY DID MAKE
THIS DREAM WORK.
WE HAVE AN AMAZING GROUP ACROSS
OUR COMMITTEES OF ABOUT 60
PEOPLE WHO HAVE BEEN ENGAGED
WITH US OVER THE COURSE OF THESE
TWO YEARS TO REALLY DRIVE US AND
CHALLENGE US, AND I HAVE
ENCOURAGED THEM MULTIPLE TIMES,
IF I'M NOT SAYING SOMETHING
RIGHT, DISAGREE WITH ME, TELL ME
WHERE I'M MISSING SOMETHING.
AND I THINK THESE FOLKS HAVE HAD
THE COURAGE AND THEY'VE ALSO HAD
THE CON VI CONVICTION TO KEEP UN
TRACK AND HEARING FROM A REALLY
BIG COMMUNITY, SO I WANT TO
THANK THIS HUGE TEAM BECAUSE
THEY REALLY HAVE BEEN ENGAGED
FOR A VERY LONG TIME IN ADDITION
TO THEIR OTHER WORK.
I DO WANT TO JUST MENTION EACH
OF THE COMMITTEES, WHAT THEY'VE
DONE JUST BRIEFLY.
SO OUR DEIA COMMITTEE HAS DONE
NOT ONLY THE ND715 BUT ALSO THE
REEP, THEY'VE CONDUCTED A PULSE
SURVEY, THEY'VE LOOKED AT OUR
FEDERAL EMPLOYEE VIEWPOINT
SURVEY AND THEY'VE REVIEWED OUR
TRAINING.
I'LL GO THROUGH THESE IN MORE
DETAIL.
THE SCIENTIFIC WORKFORCE
DIVERSITY COMMITTEE OBJECTIVES,
THEY LOOKED AT DATA FOR
WORKFORCE DIVERSITY ACROSS NICHD
INCLUDING ESSENTIALLY A 30-YEAR
RETROSPECTIVE THAT WE HOPE TO AT
SOME POINT REALLY GET TO
PUBLICATION.
THEY'VE LOOKED AT GAPS WITHIN
OUR ONGOING PROGRAMS AND
INITIATIVES.
THEY'VE DONE SOME STAKEHOLDER
ENGAGEMENT, BOTH INTERNAL AND
EXTERNAL, TO THINK ABOUT HOW TO
IMPROVE OUR ECOSYSTEM.
AND AGAIN, THEY'VE DEVELOPED
THEIR ACTION PLAN.
SO AGAIN, THIS IS THE DATA
ANALYSIS THEY DID FOR 43,000
APPLICATIONS BETWEEN 1989 AND
2022.
IT WAS A HUGE EFFORT, A
LITERATURE AND ENVIRONMENTAL
SCAN, A CONSULTATION WITH THE
EQUITY TECHNICAL ASSISTANCE
SEMINAR AND WORKSHOP AND
LISTENING SESSIONS WITH THE
COMMUNITY.
THESE ARE VERY DETAILED, I'M NOT
GOING TO GO INTO DETAIL, THEY
ARE THERE FOR YOUR
CONSIDERATION.
AND FINALLY, OUR COMMITTEE -- I
DON'T KNOW IF THIS ONE HAS THEIR
ACTIVITIES IN IT SO I'LL HAVE TO
GO BACK AND DO THAT, I
APOLOGIZE, BUT THEY HAD A SERIES
OF FIVE WORKSHOPS, THEY ALSO DID
A FULL PORTFOLIO ANALYSIS,
REALLY LOOKING AT THE
COMPLEXITY, THE LONGEVITY OF OUR
ENGAGEMENT WITH FOLKS, AND ALSO
I THINK THIS IS VERY IMPORTANT,
IT BEEN SORT OF A GUIDANCE
PRINCIPLE FOR ME OVER THE COURSE
OF THIS, IS HUMILITY.
REALLY THINKING ABOUT RESPECT
REGARDING THE COMMUNITY'S
KNOWLEDGE OF THEIR HEALTH
PRIORITIES AND ALSO TO GENERATE
SOLUTIONS, SOMETIMES THEY KNOW
BETTER THAN SCIENTIFIC EXPERTS,
SOME OF THE THINGS WE MAY NOT BE
CONSIDERING IN THE SOLUTION SET
AND APPROACHING THAT WITH
HUMILITY IS REALLY IMPORTANT.
I ALREADY TALKED ABOUT THEIR
GOALS, AND THEN THIS IS THE MORE
DETAILED VERSION.
SO OUR NEXT STEPS, WE'VE
PRESENTED OUR ACTION PLAN AND
RECOMMENDATION FOR INSTITUTE
AWARENESS, WE'RE GOING TO BE
MEETING WITH DIVISION LEADERSHIP
IN TARGET AREAS LOOKING AT COST,
RESOURCE R, FEASIBILITY AND THEN
WE'LL PROVIDE A TIMELINE AS PART
OF THE STRATEGIC PLAN.
THE OTHER THING WE NOTED WAS WE
REALLY NEED TO INCLUDE
INTRAMURAL AS KROI AS ACROSS ALE
INTRAMURALS TO MAKE SURE WE'RE
BETTER INTEGRATING.
SO WITH THAT, WE'D LOVE YOUR
FEEDBACK ON THIS, SO WE HAVE AN
INBOX FOR STRIVE.
WE'D LOVE TO HEAR FROM YOU.
AND I PUT IN THE APPENDIX SOME
OF THE UNITE PROGRESS REPORT AS
WELL, SO I WELCOME ANY
QUESTIONS.
>>THANK YOU, ALISON.
DO WE HAVE ANY QUESTIONS FOR DR?
STEPHANIE?
>>UNMUTE?
I'M SORRY, YOU'D THINK I WOULD
REALIZE I'M STILL ON MUTE
SOMETIMES.
THANK YOU SO MUCH FOR THAT.
AND I'M SO EXCITED THAT NIH IS
LOOKING AT ALL OF THIS.
AND YOU MENTIONED A LOT, BUT ONE
OF THE THINGS I WANT TO -- I
ASSUME IS BEING DONE, AND I
WONDER IF YOU COULD COMMENT, IS
WE DO TALK A LOT ABOUT
CHALLENGES AND ENGAGEMENT OF
COMMUNITIES, BUT ONE OF THE
THINGS WE DON'T OFTEN TALK ABOUT
IS HOW WE EMPOWER PEOPLE TO
CHANGE IN THIS CAPACITY.
AND I THINK THAT'S TRUE IN THE
WORKFORCE.
I ALSO THINK IT'S TRUE IN
RECRUITING PARTICIPANTS FOR
STUDIES.
I HAVE A LITTLE MORE EXPERIENCE
IN THE PARTICIPANT RECRUITING
PARTICIPANTS FOR STUDY A ANGLE O
I'M JUST GOING TO SPEAK TO THAT
BUT I THINK IT'S APPLICABLE IN
BOTH.
WE DON'T THINK ENOUGH ABOUT THAT
THERE ARE REAL BARRIERS FOR
PEOPLE TO PARTICIPATE AND IN
RESEARCH.
SO IN ORDER TO DRIVE IT UP, IT'S
NOT JUST ABOUT ENGAGEMENT.
IT'S ABOUT TAKING STEPS TO
EMPOWER THOSE COMMUNITIES TO
PARTICIPATE.
AND I JUST WANTED TO SEE IF YOU
HAD ANY COMMENTS ABOUT HOW WE
MIGHT DO THAT OR ARE THE
DISCUSSIONS THAT ARE BEING HAD
ACROSS THE BOARD ABOUT NOT JUST
LOOKING AT CHALLENGES AND
ENGAGEMENT, BUT TO THINK ABOUT
THE EMPOWERMENT ASPECT OF ALL OF
THIS.
>>AND I THINK IT'S A GREAT
POINT, STEPHANIE, AND I
APPRECIATE YOU RAISING IT.
I THINK, YOU KNOW, ONE OF THE
THINGS THAT BOTH UNITE AND
STRIVE HAVE HEARD FROM THE
COMMUNITY IS THAT FOR SOME OF
THESE COMMUNITIES THERE'S A HUGE
TRUST ISSUE, THAT'S NUMBER ONE,
SO BEING PART OF RESEARCH
REQUIRES THAT WE BUILD
RELATIONSHIPS SO WE'RE NOT JUST
HOISTING RESEARCH ON PEOPLE AND
EXPECTING THEM TO PARTICIPATE
BECAUSE WE SAY IT'S GOOD, RIGHT,
BUT PART OF THIS IS BUILDING
THAT RELATIONSHIP AND GOING IN
WITH HUMILITY.
AND I TAKE YOUR SECOND POINT, I
THINK WE KNOW JUST LIKE
HEALTHCARE, THERE ARE REAL
BARRIERS TO ACCESS TO RESEARCH,
AND WHETHER THAT'S BECAUSE THEY
DON'T HAVE THE ABILITY TO
PARTICIPATE BECAUSE IT'S TOO
MANY VISITS AND THEY'RE WORKING,
OR THEY CAN'T GET TO THE CLINIC,
OR, YOU KNOW, THIS IS NOT THE
PRIORITY WITH SOME OF THE OTHER
THINGS THEY HAVE ON THEIR
PLATES, RIGHT, I THINK WE HAVE
TO THINK ABOUT OUR RESEARCH IN
DIFFERENT WAYS.
AND I DO THINK AS WE'VE LISTEN
TODAY THE COMMUNITY AND OUR
RESEARCH SESSIONS THAT, IS
SOMETHING THAT A LOT OF THE
INVESTIGATORS AT LEAST AT NICHD
ARE VERY AWARE OF, AND IT MAY BE
BECAUSE OF THE POPULATIONS WITH
WHOM WE WORK.
BECAUSE WE'RE OFTEN WORKING WITH
FAMILIES WITH CHILDREN, WE'RE
WORKING WITH PEOPLE WITH
DISABILITIES, AND SO OFTEN THESE
INVESTIGATORS ARE PRETTY
SENSITIVE TO THAT.
BUT I WOULD SAY IT'S PROBABLY
NOT AS WIDESPREAD AS WE WOULD
LIKE TO BE, AND THERE ARE
REALITIES WITHIN THAT THAT I
THINK WE DO HAVE TO START TO
ADDRESS.
SO I VERY MUCH APPRECIATE YOUR
POINT AND I WILL BRING THAT BACK
TO OUR HEALTH DISPARITIES
RESEARCH COMMITTEE.
>>GREAT, THANK YOU.
LEWIS?
>>HELLO, GOOD TO SEE YOU.
THANK YOU FOR A GREAT
PRESENTATION.
REALLY ENJOYED THAT A LOT.
I JUST HAD TWO QUESTIONS
QUICKLY.
ONE RELATED TO A CONFERENCE I
RECENTLY ATTENDED, THE PUBLIC
HEALTH ASSOCIATION MEETING, AND
TALKING WITH SOME COLLEAGUES AND
FRIENDS THERE, REALLY INTERESTED
IN UNDERSTANDING MORE ABOUT HOW
PEOPLE FROM MORE PUBLIC HEALTH
DISCIPLINES CAN ENGAGE MORE WITH
BIOMEDICAL RESEARCHERS, RIGHT,
ARE THERE MECHANISMS KIND OF
EMERGING TO HELP SUPPORT SOME OF
THIS, AGAIN GETTING BACK TO SOME
OF THAT COMMUNITY ENGAGEMENT,
THAT KIND OF ACTIVE ENGAGEMENT
AND ALSO HELPED TO MAYBE
FACILITATE RESEARCH LOOKING AT
VARIOUS INTERSECTIONALITIES AND
SOCIAL CONSTRAINTS AND THAT.
AND THE OTHER ONE, JUST A
GENERAL COMMENT MAYBE BUT YOU
KNOW, JUST TO ECHO A BIT WHAT
WAS SAID BEFORE, I'M DIRECTING A
NEW CENTER HERE AT GEORGIA TECH
THAT'S FOCUSED ON QUESTIONS
RELATED TO EQUITY AND INEQUITIES
WITHIN THE SCIENCES AND ONE OF
THE CONCERNS IS REALLY TRYING TO
UNDERSTAND HOW TO BROADEN
ENGAGEMENT IN CLINICAL TRIALS.
REALLY EXACTLY HOW CAN PEAM DO
THAT, PARTICULARLY FROM PEOPLE
THAT MAY NOT BE FAMILIAR WITH
THE DISAIRTS WTHE DISPARITIES WN
COMMUNITIES, HOW CAN WE NOT ONLY
EDUCATE GENERALLY HOW SCIENTISTS
APPROACH THIS QUESTION, BUT THAT
COULD ALSO PEOPLE FROM
BACKGROUNDS THAT ARE LESS
FAMILIAR WITH THE DISPARITIES
THAT ARE GOING ON IN
COMMUNITIES, HOW CAN WE HELP
FACILITATE BETTER PRACTICES WITH
THOSE INDIVIDUALS AS WELL.
>>GREAT QUESTIONS, GREAT TO SEE
YOU, LEWIS.
I THINK, YOU KNOW, FOR YOUR
FIRST QUESTION, I THINK THERE
ARE A NUMBER OF FUNDING
OPPORTUNITIES AND IN FACT I
THINK ONE THING NIH IS GOOD AT
IS IF THERE'S A PROBLEM, THERE'S
A FUNDING OPPORTUNITY.
SO WE ARE TRYING VERY HARD, BOTH
THROUGH THE COMMENTS AS WELL AS
THE SPECIFIC INITIATIVES FROM
SOME OF THE INSTITUTES AND
CENTERS TO GET TO HOW DO WE
BUILD THOSE PARTNERSHIPS.
INTINCLUDING OUR PUBLIC HEALTH
RESEARCHER, OUR BIOMEDICAL
RESEARCHERS AND THE COMMUNITY.
SO ONE OF THE PROGRAMS THAT'S
GOING ON RIGHT NOW IS THE
COMPASS PROGRAM, AND YOU KNOW,
REALLY THINKING ABOUT
COMMUNITY-LED MULTIDIMENSIONAL
RESEARCH.
AND SO THAT WENT OUT THROUGH THE
COMMON FUND, BUT THERE ARE
HONESTLY TOO MANY FUNDING
OPPORTUNITIES RIGHT NOW TO NAME.
SO I THINK THERE ARE
OPPORTUNITIES TO BRING THOSE
MULTIDISCIPLINARY TEAMS TO BEAR
TO TACKLE THIS ISSUE.
TO YOUR SECOND QUESTION, I THINK
THIS IS THE HARDER PROBLEMS TO
SOLVE, RIGHT?
BRINGING PEOPLE UP TO SPEED WITH
WHAT THOSE CHALLENGES ARE AND
HOW WE DO BETTER TO ENGAGE
PEOPLE, AND AGAIN, YOU KNOW, THE
THING THAT I'VE HEARD OVER AND
OVER AGAIN IS IT'S ABOUT
BUILDING THAT RELATIONSHIP.
AND WE CANNOT EXPECT PEOPLE TO
JUST JUMP IN BECAUSE WE'D LIKE
THEM TO.
AND WE HAVE TO RECOGNIZE REAL
BARRIERS.
JUST LIKE I THINK MANY OF YOU
WHO HAVE ENGAGED WITH THE
DISABILITY COMMUNITY RECOGNIZE,
IF YOUR PARTICIPANTS DON'T HAVE
ACCESS TO ACCESSIBLE
TRANSPORTATION, THEY CAN'T GET
TO YOUR SITE.
IF THEY DON'T HAVE THE SUPPORTS
THEY NEED TO PARTICIPATE, WE
CAN'T COORDINATE WITH THEIR
CAREGIVER SCHEDULE, IF THEY HAVE
A CARE PARTNER, YOU KNOW, WE
HAVE A PROBLEM WITH GETTING THEM
IN.
SO I THINK GETTING THAT
EDUCATION OUT MORE BROADLY AND
GETTING THAT ENGAGEMENT STRATEGY
OUT MORE BROADLY IS GOING TO
TAKE LONGER.
AND MY HOPE IS WITH MORE OF OUR
ENGAGEMENT WITH THE COMMUNITY
AND ALSO BUILDING A WORKFORCE
THAT MAYBE UNDERSTANDS THEM A
LITTLE BIT BETTER, WE MAY BE
ABLE TO TURN THE CURVE ON THAT.
I THINK I SAW CATHY NEXT, ERIC.
>>THAT'S RIGHT.
>>HI, ALISON.
THANK YOU.
THIS WAS A REALLY GOOD PAREN TAI
VERY INTERESTING.
I APPRECIATED THAT THERE WAS A
PIECE IN THERE THAT ADDRESSES
TRAINING, AND THIS MAY ALREADY
BE CONSIDERED, BUT WE FOUND THAT
THE -- AT THE NATIONAL MS
SOCIETY THAT THERE'S KIND OF A
SIGNIFICANT GAP IN HOW
SCIENTISTS EVEN TALK ABOUT THEIR
OWN WORK, SO I'M CURIOUS, HAS
YOUR GROUP CONSIDERED THE
IMPORTANCE OF TRAINING
SCIENTISTS ABOUT HOW TO EVEN
SPEAK ABOUT THEIR WORK AND KIND
OF AN ACCURATE AND ENGAGING WAY
SO THAT THE COMMUNITY CAN SEE
WHERE THEY FIT IN WITH ALL OF
THAT?
>>I CAN TELL YOU WE DO THAT
MORE ON THE INTRAMURAL SIDE THAN
WE DO IT ON THE EXTRAMURAL SIDE.
AND I THINK THERE ARE SOME
THINGS THAT ARE GOING ON NOW IN
TERMS OF BOTH ON THE MENTORING
PROGRAMS THAT HAVE BEEN
DEVELOPED THROUGH THE CHIEF
OFFICER FOR SCIENTIFIC WORKFORCE
DIVERSITY THROUGH MARIE
BERNARD'S OFFICE AND TRAINING
COHORTS OF SCIENTISTS TO BRING
THAT RELEVANCE IN.
I KNOW ON THE INTRAMURAL SIDE
HERE AT NIH, WE DO A LOT OF THAT
TRAINING.
THROUGH THE OFFICE OF INTRAMURAL
TRAINING AND EDUCATION.
SO THERE'S LOTS OF THREE-MINUTE
TALKS, FIVE-MINUTE TALKS,
ELEVATOR SPEECH TRAINING.
HOW DO YOU CONVEY THE
MEANINGFULNESS OF YOUR WORK, ET
CETERA.
AND FOR THOSE THAT -- SOMETIMES
IT'S A LITTLE HARDER WITH
FOUNDATIONAL SCIENCE VERSUS
CLINICAL WORK TO SHOW THAT
ENGAGEMENT WITH THE COMMUNITY,,
SO IT'S SOMETHING THAT WE'RE
DOING BUT SOMETIMES NOT WITH
THAT EQUITY LENS.
SOMETIMES IT'S A LITTLE BIT
CHALLENGING WITH SOME OF THE
RESEARCH WE'RE DOING BUT I THINK
IT'S ALWAYS GOOD TO HAVE THE
INVESTIGATORS LOOKING AT IT THAT
WAY.
AND I ALSO THINK, YOU KNOW, IT'S
INTERESTING BECAUSE IN OUR
TRAINING ANALYSIS, WHAT WE'RE
SEEING IS THAT PEOPLE -- WE
DON'T REALLY HAVE THAT SORT OF
STRAIGHT PIPELINE THAT EVERYBODY
THINKS.
A LOT OF PEOPLE WHEN THEY'RE
FIRST STARTING ARE STARTING AT
THE R01.
SO WHAT WE THINK IS PART OF
THEIR FOUNDATION HAS N IS NOT RY
GOTTEN THROUGH NIH TRAINING,
IT'S GOTTEN SOMEWHERE ELSE, SO
WE RIL REALLY HAVE TO THINK ABOT
WHERE THEY START, THEY DON'T
HAVE A NATURAL PROGRESSION
THROUGH THE NIH MECHANISMS AS
WE'VE ALWAYS THOUGHT, SO WHEN DO
WE ENGAGE THEM TO TRAIN THEM.
>>I THINK THAT'S A REALLY GOOD
POINT.
I WAS JUST GOING TO ADD, BECAUSE
I THINK IN TRAINING AND GETTING
A PH.D., YOU'RE SORT OF TRAINED
OUT OF WRITING IN A WAY THAT IS
KIND OF LAY-FRIENDLY, SO TO
SPEAK.
SO I FEEL LIKE IT NEEDS TO BE
TRAINED BACK IN SOME WAY.
SO YOU'RE RIGHT, I DON'T KNOW
WHERE THE BEST PLACE IS FOR THAT
EITHER.
THANKS.
>>BOB?
>>HI, ALISON.
THANK YOU FOR THAT.
AND I JUST WANT TO MAKE A
COMMENT IN TERMS OF NIH MAYBE IS
PROVIDING INFRASTRUCTURE TO
ENHANCE WORKFORCE DIVERSITY IN
SCIENCE.
I NOTICED THAT BOTH FROM MY OWN
EXPERIENCE AND FROM MY TRAINEES'
EXPERIENCES, THE IMPORTANCE OF
POSTDOCTORAL TRAINING, OF
COURSE, AND THE FACT THAT I
THINK THERE'S A HUGE DISPARITY
IN POSTDOCTORAL OPPORTUNITIES
FOR PEOPLE WHO HAVE GENERATIONAL
WEALTH AND THOSE WHO DON'T.
AND I THINK THAT COMES FROM THE
FACT THAT WE PAY POSTDOCS SO
POORLY, AND WE PAY POSTDOCS SO
POORLY BECAUSE THE NIH TRAINING
GRANTS HAVE THESE HORRIBLE
RANGES THAT DON'T REALLY APPLY
TO MOST OF THE COUNTRY'S COST OF
LIVING, AND I KNOW THEY'RE
SUPPOSED TO BE MINIMUM RANGES OR
MINIMUM SALARIES FOR TRAINING
GRANTS, WHICH IS IMPORTANT, BUT
THEY ARE USED BY INSTITUTIONS
LIKE MY OWN TO SET THE RANGES
THAT WE'RE ALLOWED TO PROVIDE
POSTDOCS AND R01s AND I THINK
THIS REALLY NEEDS TO BE VISITED
BECAUSE I THINK THESE SALARIES
AT A TIME WHEN PEOPLE ARE
ESTABLISHING FAMILIES AND
WHATNOT, AND I THINK THAT
TRADITIONALLY, WE'VE HAD A
SYSTEM THAT HAS FAVORED PEOPLE
WITH WEALTH, AND I THINK THAT
THIS SYSTEM -- I OBVIOUSLY THINK
THAT THIS SYSTEM DOESN'T.
THANK YOU.
>>YEAH, IT'S AN INCREDIBLY
STRONG POINT, AND HAS BEEN
CONSIDERED, AND I REALLY
APPRECIATE YOU RAISING IT.
THIS IS PART OF THE STRUCTURAL
ARGUMENT, RIGHT, IS THAT THE WAY
THESE POLICIES AND PRACTICES ARE
SET UP, WE'RE ASSUMING A LOT OF
THINGS ABOUT WHAT PEOPLE CAN AND
CANNOT DO, AND ALSO
GEOGRAPHICALLY THERE ARE HUGE
DISPARITIES.
SO THE INCOME LEVEL IS PRETTY
MUCH SET NATIONALLY, BUT IF
YOU --
>>ACTUALLY, I JUST WANTED TO
JUMP IN THERE A SECOND.
IF YOU LOOK AT THE HIGHEST
RANKED UNIVERSITIES IN THE
COUNTRY, THEY TEND TO BE IN THE
MOST EXPENSIVE LOCATION.
>>YEAH, AND I MEAN, YOU KNOW,
EVEN SMALL THINGS U KNOW, ONE OF
THE THINGS, AND IT TOOK A LOT OF
EFFORT AND I WOULD SAY DIANA WAS
VERY, VERY ACTIVE IN THIS, EVEN
GETTING THE CHILD CARE STIPEND
AS PART OF THE POSTDOC
COMPENSATION PACKAGE, RIGHT?
I MEAN, THAT TOOK A LOT OF
EFFORT AND A LOT OF WILL BY A
LOT OF PEOPLE TO MAKE THAT
HAPPEN.
BUT HAVING HAD CHILDREN MYSELF
WHEN I WAS A POSTDOC, I
ESSENTIALLY LEFT MY POSTDOC
BECAUSE MY SALARY WAS GOING TO
BE PAYING CHILD CARE, AND THAT
WAS ESSENTIALLY THE ONLY THING
IT WAS GOING TO BE PAYING FOR.
YOU KNOW, IN D.C. , IT'S
ESSENTIALLY THE PRICE OF A
HOUSE.
YOU KNOW, A MORTGAGE FOR A YEAR.
SO YOU KNOW, I THINK THAT IS
SOMETHING THAT WE DO HAVE TO
LOOK AT AS AN ORGANIZATION.
NOW THE FLIPSIDE IS, THE HIGHER
THE SALARIES FOR THE POSTDOC,
POSSIBLY THE FEWER POSTDOCS WE
CAN OFFER.
AND SO I THINK THAT'S GOING TO
BE THE QUESTION.
AS WE ALL KNOW, OUR
APPROPRIATIONS LIMIT WHAT WE CAN
FUND, AND SO WE HAVE TO THINK
ABOUT THE PROPORTIONALITY ABOUT
THAT FUNDING AND HOW WE ASSIGN
IT.
BUT I THINK IT IS SOMETHING THAT
WE ARE CONSIDERING.
WE'RE ALSO LOOKING, YOU KNOW, AT
OUR RATES OF FUNDING FOR EARLY
STAGE INVESTIGATORS WHERE
THEY'RE ON THEIR R01 OR AT-RISK
INVESTIGATORS.
WE'RE ALSO LOOKING AT
DEVELOPING -- THERE'S ANOTHER
PROGRAM JUST FOR EVERYBODY'S
AWARENESS THAT'S TARGETED AT
BRINGING IN EARLY CAREER
FACULTY.
THE FIRST PROGRAM.
AND THAT ONE IS NOT FOR A
POSTDOC.
THAT IS FOR FACULTY-LEVEL
POSITIONS AND HOW DO WE BUILD
THESE INCLUSIVE CULTURES AT
INSTITUTIONS.
SO I THINK WE'RE TRYING TO GET
AT IT A NUMBER OF DIFFERENT
WAYS, BUT I TOTALLY TAKE YOUR
POINT, PART OF THIS IS
STRUCTURAL AND IT'S VERY HARD
FOR PEOPLE TO CONTINUE THEIR
CAREERS WHEN THEY DON'T HAVE
SALARIES THAT ARE EQUITABLE AND
ALLOW THEM TO HAVE A LIVING
WAGE.
>>GREAT.
THANK YOU, ALISON.
THAT WAS A GREAT PRESENTATION
AND A REALLY NICE DISCUSSION.
IT WAS GOOD TO SEE YOU AGAIN.
>>GOOD TO SEE ALL OF YOU.
>>OKAY.
OUR NEXT TOPIC IS GOING TO BE
RESEARCH INFRASTRUCTURE, AT OUR
LAST MEETING SIX MONTHS AGO THIS
BOARD CAME UP WITH A WORKING
GROUP TO ASSESS THE
INFRASTRUCTURE.
THIS WAS A TOPIC WHERE WE'RE
REALLY LOOKING FOR THE BOARD'S
INPUT.
AS YOU KNOW, A SIGNIFICANT
PORTION OF THE BUDGET GOES
TOWARDS INFRASTRUCTURE.
SO BEFORE WE MOVE ON TO OUR NEXT
PRESENTATIONS, I WOULD LIKE TO
INVITE RALPH NITKIN TO PROVIDE A
HISTORICAL OVERVIEW OF THE TYPE
OF STRUCTURE THEY'VE BEEN
PROVIDING.
>>I'D JUST LIKE TO REMIND
PEOPLE THAT FROM THE POINT THE
CENTER WAS FIRST FORMED IN THE
EARLY 19 ' 1990s, RESEARCH
INFRASTRUCTURE HAS BEEN BE A
COMMITMENT.
REHABILITATION HAD A LONG
TRADITION OF HOW IT TREATED
PEOPLE BUT I THINK THAT A LOT OF
OUR FOUNDERS REALIZED IT WAS AN
AREA THAT WE NEEDED MORE
TRAINING FOR PEOPLE TO BE
RESEARCHERS TO REALLY HAVE
ROBUST RESEARCH QUESTIONS AND TO
BRING PEOPLE IN FROM ALLIED
FIELDS.
SO THE SUPPORT OF RESEARCH
INFRASTRUCTURE HAS ALWAYS BEEN A
STRONG COMPONENT OF THIS CENTER
AND WE'VE HAD SOME SUCCESSFUL
PROGRAMS OVER THE YEARS, BUT IT
TIME TO KIND OF THINK ABOUT
THOSE TRAINING WHEELS AND WHERE
WE GO FROM HERE.
AND IT'S A VERY TIMELY POINT
WHERE WE'RE DOING SOME SOUL
SEARCHING, AND IT'S THE
BEGINNING OF A DISCUSSION ABOUT
WHERE WE GO FROM HERE, AND WE
REALLY WANT TO HAVE YOU FOLKS
HAVE A VERY ROBUST DISCUSSION.
WE HAD A SUBCOMMITTEE YOU'LL
HEAR ABOUT WHO STARTED MEETING
ON THIS MONTHLY, AND THEY HAVE
SOME INITIAL BACKGROUND REPORT,
BUT I REALLY WANT YOU TO PAY
ATTENTION TO THIS AND I REALLY
WANT YOU TO JOIN IN AND TO HAVE
A VERY STRONG, ROBUST DISCUSSION
ABOUT THIS AFTER THIS.
WE'VE BLOCKED AN HOUR AND A HALF
FOR THIS DISCUSSION AND WE
REALLY WANT YOUR RECOMMENDATIONS
ON THIS.
SO I'LL PASS THAT BACK TO ERIC.
>>GREAT.
I'D LIKE TO WELCOME STEPHANIE
DELUCA AND DON EHDE WHO LED THE
WORKING GROUP AND GIVE A SUMMARY
OF THEIR FINDINGS.
>>GREAT.
I'M DELIGHTED TO BE HERE.
LET ME JUST SHARE MY SCREEN.
I'LL BE SHARING SOME SLIDES WITH
YOU.
ALL RIGHT.
WELL AGAIN, I'M DAWN EHDE, AND
ALONG WITH DR. STEPHANIE DELUCA,
WE CO-CHAIRED THE WORK GROUP FOR
THIS, AND YOU'LL LEARN WHO THE
MEMBERS WERE AT THE END OF MY
PRESENTATION.
I AM GOING TO FIRST JUST GIVE
YOU A LITTLE HISTORY OF WHAT WE
DID, SOME BACKGROUND OF THE WORK
GROUP, OUR APPROACH, AND THEN
DESCRIBE THE PROPOSED SOLUTION
AND CONCLUSION.
AFTER THE ACKNOWLEDGMENTS, I'M
GOING TO OPEN IT UP FOR
DISCUSSION, AND I WILL BE ABLE
TO GO BACK IN THE SLIDES IF YOU
WANT TO LOOK BACK AT SOME OF THE
SLIDES, PARTICULARLY THE SLIDES
WHERE WE TALK ABOUT THE SOLUTION
AND CONSIDERATIONS.
BUT I REALLY WANT TO SAVE TIME
FOR DISCUSSION AND YOUR INPUT
BECAUSE THAT'S CRITICAL.
ALL RIGHT.
SO HOW DID WE GET TO WHERE WE
ARE TODAY?
WELL, AS RALPH DESCRIBED, THE
RESEARCH INFRASTRUCTURE HAS BEEN
AROUND FOR MANY YEARS AND HAS
BEEN AN IMPORTANT PART OF NCMRR.
AND THE CURRENT MEDICAL REHAB
RESEARCH RESOURCE NETWORK, ALSO
KNOWN AS MR3N, HAS THESE FIVE
DIFFERENT AREAS OR GOALS, I
SHOULD SAY, WITH SIX REHAB
RESEARCH CENTERS WITH THE GOAL
TO PROVIDE EXPERTISE,
TECHNOLOGIES, AND RESOURCES TO
THE MEDICAL REHABILITATION
RESEARCH COMMUNITY.
AND RIGHT NOW, THE EXISTING MR3N
IS ABOUT HALFWAY THROUGH THEIR
FIVE-YEAR PERIOD OF ITS RESEARCH
INFRASTRUCTURE.
AND I WOULD ENCOURAGE YOU TO
LOOK AT THE MR3 AND WEBSITE AT
SOME POINT AFTER OUR MEETINGS
TODAY, BECAUSE IT'S A VERY
WEALTHY RESOURCE FOR RESEARCHERS
OF ANY STAGE, AND IT WILL ALSO
GIVE YOU A GOOD IDEA OF WHAT
THEY'VE BEEN UP TO.
SO IN TERMS OF OUR WORK GROUP,
OUR GOALS WERE TO BROADLY REVIEW
THE CURRENT REHAB INFRASTRUCTURE
SUPPORT STRUCTURE TO ASSESS THE
CURRENT INFRASTRUCTURE NEEDS FOR
REHABILITATION RESEARCH IN THE
REHABILITATION COMMUNITY, AND
THEN TO DEVELOP A HIGH LEVEL
STRATEGIC OPPORTUNITIES AND
CONSIDERATIONS ON HOW TO ADDRESS
INFRASTRUCTURE GAPS IN MEETING
THOSE NEEDS THAT WERE
IDENTIFIED.
OUR DUTIES, WHIC WE YOU A TENDED
CONTRIBUTED TO MONTHLY MEETINGS,
WE ENGAGED IN A LOT OF
BRAINSTORMING AND FEEDBACK, AND
THEN DEVELOPED A FINAL SET OF
CONSIDERATIONS AN OPPORTUNITIES
WHICH I'LL BE SHARING WITH YOU
TODAY, AND THEN ALSO OUR OTHER
TASK TO REPORT BACK TO YOU.
IN TERMS OF THE TIMELINE, WE HAD
OUR KICKOFF IN JUNE, REALLY DID
A LOT OF BRAINSTORMING, AND CAME
UP WITH A REQUEST FOR
INFORMATION THAT NIH PUT OUT.
THAT WAS PUT OUT IN JULY AND WE
ALSO IN OUR MEETING LOOKED AT
INTERNAL AND EXTERNAL
INFRASTRUCTURE EXAMPLES PROVIDED
TO US AND THE RFI WAS RELEASED.
WE ALSO DECIDED TO LOOK AT DATA,
SO A BIG PART OF THIS WAS ALSO
LOOKING AT TATA T DATA THAT NIHD
GENERATE TO HELP US UNDERSTAND
WHAT THE INFRASTRUCTURE PROGRAM
HAS BEEN -- HAS YIELDED THAT
COULD BE GAINED BY SUCH DATA.
WE LOOKED IN AUGUST AT THE RFI
RESPONSES AND LOOKED AT ALSO THE
DATA THAT NIH PROVIDED TO US,
AND THEN REALLY SPENT OUR LAST
MEETINGS DEVELOPING AND
DISCUSSING, BASED ON THE
FEEDBACK, BASED ON EVERYTHING WE
HAD REVIEWED, REALLY THE
INFRASTRUCTURE GOALS AND
CONSIDERATIONS WHICH WE NOW ARE
PRESENTING TO YOU IN A FINAL
DRAFT REPORT.
I WANT TO HIT ON SOME OF THESE
KEY TYPES OF INFORMATION THAT
ARE DRIVING OUR CONSIDERATIONS
AND RECOMMENDATIONS.
IN TERMS OF THE REQUEST FOR
INFORMATION, AGAIN IT WENT OUT
IN JULY OF THIS YEAR.
IT WENT TO A VERY BROAD AUDIENCE
AND IT INCLUDED RESPONSES FROM
PROFESSIONAL ORGANIZATIONS,
CURRENT AND FORMER ADVISORY
BOARD MEMBERS, CURRENT AND
FORMER P2C PIs, SO PIs OF
THE INFRASTRUCTURE GRANTS,
REWARDS, AS WELL AS STAKEHOLDERS
INCLUDING STAKEHOLDER OR PATIENT
ADVOCACY GROUPS.
AND YOU'LL SEE ON THIS SLIDE, ON
THE RIGHT, ARE REALLY THE
RESPONSE THEMES THAT CAME UP
FROM THIS RFI.
AND AS YOU'LL SEE AT THE TOP AND
RELEVANT TO THE PREVIOUS
PRESENTATION BY ALISON,
DIVERSITY, EQUITY, INCLUSION,
ACCESSIBILITY WAS A THEME OF
HIGH IMPORTANCE FROM THE INPUT
WE GOT.
ALSO STAKEHOLDER ENGAGEMENT,
AGAIN ANOTHER THEME THAT YOU'RE
HEARING ABOUT IN OUR MEETING
TODAY, SOMETHING THAT IS
INCREASINGLY IMPORTANT IN THE
REHABILITATION RESEARCH, IT'S
ALWAYS BEEN IMPORTANT BUT MAYBE
INCREASINGLY RECOGNIZED AS
IMPORTANT IN THE REHABILITATION
RESEARCH FIELD, AND SOMETHING
THAT'S BROADENING FROM PAST
INFRASTRUCTURE AWARDS.
ALSO MENTORSHIP OPPORTUNITIES,
HANDS-ON TRAINING, AND REALLY A
DESIRE FOR CROSS-DISCIPLINARY
SPACES AND CONNECTIONS.
ALSO WE HEARD THAT AGGREGATING
REHABILITATION DATA INTO A
CENTRAL REPOSITORY AND HAVING
MORE DATA SCIENCE SKILLS
TRAINING WAS ALSO DESIRED.
ADDITIONAL THEMES INCLUDED
EMBEDDING TRANSLATING RESEARCH
INTO CLINICAL PRACTICE SO THAT
DISSEMINATION IMPLEMENTATION
TRANSLATION THEME, AND THERE WAS
SOME FEEDBACK AROUND HAVING
IMPAIRMENT-BASED CENTERS, SO FOR
EXAMPLE, A CENTER BASED ON
TRAUMATIC BRAIN INJURY.
OR CANCER REHABILITATION.
WE DID GET SOME CONFLICTING
OPINIONS.
THERE WERE SOME OF OUR
STAKEHOLDERS WHO PROVIDED INPUT
THAT THERE WAS TOO MUCH VERSUS
TOO LITTLE.
OTHERS SAID ON CLINICAL TRIALS
AND TECHNOLOGY DEVELOP M.
THE WORK GROUP THEN SAT DOWN
WITH THIS INFORMATION AND DID
REALLY A BRAINSTORM OR WHITE
BOARDING SESSIONS AND WE ASKED
OURSELVES IF WE COULD DESIGN THE
IDEAL REHABILITATION RESEARCH
INFRASTRUCTURE FROM SCRATCH,
WHAT ELEMENTS SHOULD IT CONTAIN.
AND WHAT SHOULD BE THE
OVERARCHING GOALS.
AS YOU SEE ON THIS SLIDE, SOME
OF THESE THINGS THAT WE THOUGHT
SHOULD BE IN IT ARE THINGS THAT
ARE IN SOME OF THE EXISTING
MR3 NETWORK.
BUT ALSO SOME ARE NEW.
SO FOR EXAMPLE, WE THOUGHT THAT
THE INFRASTRUCTURE SHOULD
INCLUDE INCREASED AN INTENTIONAL
FOSTERING OF MULTIDISCIPLINARY
COLLABORATION IN TEAM SCIENCE.
AGAIN, A REAL EMPHASIS ON
STAKEHOLDER ENGAGEMENT AND
PARTICIPATORY ACTION RESEARCH,
THAT THE RESEARCH WOULD BE
DRIVEN BY WHAT'S MOST IMPORTANT
AND THE RESEARCH QUESTIONS MOST
IMPORTANT TO OUR STAKEHOLDERS
THAT A WE SERVE IN THE
REHABILITATION FIELD.
A THEME OF HAVING MORE EARLY
CAREER RESEARCH SUPPORT, ANOTHER
THEME ON TRANSLATION AND
IMPLEMENTATION SCIENCE, AS WELL
AS LOOKING AT SABBATICALS OR
PROTECTED TIME FOR RESEARCHERS
TO REALLY GAIN SKILLS OR
DISSEMINATE/DEVELOP RESEARCH
THAT'S IMPORTANT TO THE FIELD.
ON-DEMAND ACCESS TO TOOLS AND
SERVICES, THE MR3 NETWORKS HAVE
SOME OF THIS ALREADY, OR NETWORK
CROSS TRAINING, AND THEN AGAIN,
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY, WITH YOU THOUGHTS
VERY, VERY IMPORTANT TO THE WORK
STRUCTURE.
THE OTHER IDEA,
INFRASTRUCTURE -- AFTER THE
FUNDING PERIOD WAS OVER, THOSE
TOOLS, RESOURCES, WHATEVER THEY
MAY BE, WOULD BE SUSTAINABLE
BEYOND THE PERIOD OF TIME OF
FUNDING.
AND I THINK SOME OF WHAT WE
TALKED ABOUT THE MOST WAS THAT
WE REALLY THINK THAT THE
INFRASTRUCTURE NEEDS TO FOCUS ON
PRODUCING IMPACTFUL, HIGH
QUALITY RESEARCH.
AND THIS IS A QUESTION I'D LIKE
TO COME BACK TO AT THE END TODAY
DURING OUR DISCUSSION IS, HOW DO
WE DEFINE IMPACTFUL, HIGH
QUALITY RESEARCH?
WE'LL WANT YOUR PRESID PRESI OPT
AND IDEAS.
AS I SAID EARLIER, WE ALSO
LOOKED AT INFORMATION THAT NIH
TEAM GAVE TO US IN TERMS OF A
DATA REVIEW.
SO WE LOOKED AT EXISTING
INFRASTRUCTURE WITHIN THE NIH,
SO FOR EXAMPLE, THE CLINICAL
RESEARCH NETWORKS, THE RESEARCH
EVALUATION AND COMMERCIALIZATION
HUBS, THE CURRENT P2C MECHANISM,
AND REALLY LOOKING AT WHAT'S
THERE ALREADY, BECAUSE WE WANT
TO -- WE WERE THINKING WE WANTED
TO RECOMMEND NOT REPLICATING
THINGS THAT -- RESOURCES THAT
ALREADY EXIST.
WE ALSO LOOKED TO NON-NIH
INFRASTRUCTURE RESOURCES, MANY
OF WHICH ARE REPRESENTED IN OUR
BOARD MEETING TODAY, BUT LOOKING
TO V.A., THE IT WE DEPARTMENT OF
DEFENSE CENTERS OF EXCELLENCE,
THE NCAA SCIENCE FOUNDATION
CENTERS AND THE NIDILRR MODEL
SYSTEMS.
WE THEN LOOKED AT PROGRAM DATA,
INCLUDING NIH REHABILITATION
FUNDING, AS WELL AS NCMRR
FUNDING TRENDS, EARLY CAREER
AWARD APPLICATION DATA OR
CAREER, I SHOULD SAY, PILOT DATA
FROM THE P2C INFRASTRUCTURE
PROGRAMS AND THEN FUNDED
INFRASTRUCTURE PROGRAM TOPICS
AND NCMRR CENTERS FROM 2000 TO
2025.
SO TAKING ALL THIS INFORMATION,
WE THEN CAME UP WITH I THINK
SEVEN CONSIDERATIONS THAT I'M
GOING TO SHARE WITH YOU AND SIX
RECOMMENDATIONS.
SO OUR FIRST CONSIDERATION IS,
WE THOUGHT IT WAS IMPORTANT THAT
NIH KEEP IN MIND THAT
INFRASTRUCTURE SUPPORT IS
IMPORTANT TO THE FUTURE OF
REHABILITATION RESEARCH.
AND THAT NCMRR IS THE NATURAL
LEADER FOR THIS AT THE NIH.
WE ALSO THOUGHT AN IMPORTANT
CONSIDERATION IS THAT, AGAIN,
NCMRR SHOULD BE MINDFUL OF
EXISTING INFRASTRUCTURE
RESOURCES.
SUCH AS THE NIH CLINICAL AND
TRANSLATIONAL SCIENCE AWARD
PROGRAMS WHICH PROVIDE NUMEROUS
RESOURCES TO CLINICAL
RESEARCHERS AS WELL AS CLINICAL
RESERESEARCH NETWORKS, NIDILRR'S
PROGRAMS SUCH AS THE MODEL
SYSTEMS AND REHABILITATION
ENGINEERING RESEARCH CENTERS.
AND THAT REALLY NCMRR'S EFFORTS
SHOULD BE COMPLEMENTARY AND NOT
DUPLICATE THESE EFFORTS.
ONE MOMENT, PLEASE.
SORRY.
EXCUSE ME.
I HAD TO CHEW MY DOG OUT.
A THIRD CONSIDERATION IS THAT
THE TRAINING OF REHABILITATION
RESEARCHERS IS ESSENTIAL FOR THE
GROWTH OF THE REHABILITATION
RESEARCH FIELD.
AND THAT THE CURRENT
INFRASTRUCTURE PROGRAM, THE P2C
NETWORK, IS REALLY NOT A
REPLACEMENT FOR DEDICATED AND
LONGER-TERM TRAINING PROGRAMS.
SO CERTAINLY WHILE WE THINK THAT
P2C NETWORKS SHOULD THINK ABOUT
TRAINING, REALLY ANY POTENTIAL
TRAINING ASPECTS OF
INFRASTRUCTURE SITES SHOULD BE
CONSIDERED IN CONJUNCTION WITH
OTHER TRAINING PROGRAMS, AND
THAT THAT'S A TOPIC BEYOND THE
SCOPE OF OUR WORK GROUP.
ANOTHER CONSIDERATION WAS THAT
GIVEN THE COMPLEXITIES OF THE
BREADTH OF TOPICS WITHIN THE
INFRASTRUCTURE, MULTIPLE AND
TAILORED PROGRAMS MAY BE NEEDED
RATHER THAN ONLY BROAD CALLS FOR
INFRASTRUCTURE USED PREVIOUSLY.
SO THIS CONSIDERATION IS REALLY
A CHANGE TO SOME DEGREE FROM HOW
THE INFRASTRUCTURE CALLS HAVE
COME OUT IN THE PAST, WHICH HAVE
BEEN MORE FOCUSED.
OR EXCUSE ME, MORE BROAD.
ANOTHER INFRASTRUCTURE
CONSIDERATION IS THAT IT SHOULD
BE USED TO INCREASE ACCESS TO
HIGH QUALITY DATA AND INCLUDE
DIVERSITY IN ALL ASPECTS OF
RESEARCH AS WE'VE BEEN
DISCUSSING TODAY, AND
STAKEHOLDER ENGAGEMENT.
SO REALLY BROADENING THE FOCUS
TO REALLY CENTER RESEARCH ON
STAKEHOLDER ENGAGEMENT DIVERSITY
AND HIGH QUALITY DATA.
A SIXTH CONSIDERATION, WHILE
CHALLENGING OUT COME METRICS FOR
THE SUCCESS OF THE NEXT PHASE
SHOULD FOCUS ON RESEARCH AND ITS
IMPACT IN ADDITION TO
TRADITIONAL METRICS OF ACADEMIC
SUCCESS.
SO IN ADDITION TOLL LOO TO LOOKW
MANY R01s ARE SUBMITTED IN
REHAB RESEARCH, YOU KNOW,
LOOKING AT IMPACT OF THE
RESEARCH.
THE SEVENTH CONSIDERATION, THEN,
WAS THAT WE STRONGLY ENCOURAGE
COMMUNICATION AND COLLABORATION
ACROSS INFRASTRUCTURE SITES AND
THAT THIS ADDS VALUE AND CREATES
A SENSE OF COMMUNITY.
SO HERE YOU SEE ALL OF OUR
CONSIDERATIONS.
I CAN COME BACK TO THIS SLIDE
DURING OUR DISCUSSION AS NEEDED.
WE ALSO SAW OPPORTUNITIES, I
THINK SIX OF THEM I'M GOING TO
CALL YOUR ATTENTION TO, AND
AGAIN, THESE ARE THEMES THAT
YOU'VE HEARD THAT REALLY BUILD
ON WHAT THE WORK GROUP USED TO
INFORM OUR RECOMMENDATIONS.
AND SO THE FIRST OPPORTUNITY WE
SEE REALLY IS FOR
CROSS-DISCIPLINARY
COLLABORATION, AND THAT ALTHOUGH
REHABILITATION AS A PRACTICE IS
OFTEN INTERDISCIPLINARY, OUR
RESEARCH IS OFTEN SILOED BY
DISCIPLINE OR BY DISEASE.
AND THAT INFRASTRUCTURE REALLY
HAS AN OPPORTUNITY TO PROVIDE
TEAM SCIENCE TO DO MORE
COMMUNITY BUILDING, AND MORE
CROSS-DISCIPLINARY PROJECTS,
WHICH ARE OFTEN DIFFICULT TO
ACHIEVE IN THE TYPICAL STANDARD
NIH GRANT MECHANISMS.
WE ALSO SEE AN OPPORTUNITY FOR
MORE HIGH QUALITY AND ACCESSIBLE
RESEARCH DATA WITH THE
INFRASTRUCTURE HAVING THE GOAL
TO PRODUCE HIGH QUALITY
IMPACTFUL AND BROADLY ACCESSIBLE
DATA.
SO LOOKING AT HOW TO SHARE AND
MAKE DATA AVAILABLE TO OTHERS.
AGAIN THIS THEME OF IMPACTFUL
RESEARCH THAT WE REALLY CAN'T
STRESS ENOUGH.
WE THINK THERE'S THIS
OPPORTUNITY ACROSS THE
TRANSLATIONAL SPECTRUM OF
SCIENCE TO REALLY HOLD IMPACT OF
THE RESUCH RESEARCH AS A GOAL AO
TAKE THE OPPORTUNITY FOR DIRECT
IMPACT AND THE IMPACT TO REALLY
START AT BENCH SCIENCE ALL THE
WAY THROUGH TO TRANSLATIONAL
SCIENCE, AND THAT THAT BE
CONSIDERED.
THINKING ABOUT IMPACT THEN ALSO
ONE THINKS ABOUT IMPLEMENTATION
SCIENCE, THAT THERE'S AN
OPPORTUNITY TO CONDUCT RIGOROUS
CLINICAL RESEARCH THAT SHOULD
CONSIDER THE IMPLEMENTATION OF
FINDINGS TO FULFILL THE GOAL OF
IMPACTING CLINICAL CARE.
AND THEN FLEXIBLE FUNDING
OPPORTUNITIES.
THAT NIMBLE FUNDING IS IMPORTANT
TO KEEP INFRASTRUCTURE SUPPORTED
RESEARCH DYNAMIC AND RESPONSIVE
TO COMMUNITY NEEDS.
WE SAW THAT AS A REAL
OPPORTUNITY AND VALUE.
OPPORTUNITY SIX THEN, DIVERSITY,
EQUITY AND INCLUSION AND
ACCESSIBILITY, INFRASTRUCTURE
CAN BE USED TO INCREASE
DIVERSITY AND THE INCLUSION OF
INDIVIDUALS WITH LIVED
EXPERIENCE, WHO ARE
TRADITIONALLY UNDERREPRESENTED
IN RESEARCH, IN ALL ASPECTS OF
THE RESEARCH PROCESS, STAFF
WORKING ON RESEARCH, TO RESEARCH
PARTICIPANTS, THAT THIS IS A
REAL OPPORTUNITY THAT THE
INFRASTRUCTURE PROGRAM SHOULD
TAKE AND RUN WITH.
SO HERE YOU SEE AGAIN THE SIX
OPPORTUNITIES THAT WE CAME UP
WITH, AND I CAN COME BACK TO
THIS SLIDE AS NEEDED AS WELL.
SO IN CONCLUSION, REALLY, YOU
KNOW, THE WORK GROUP SET OUT TO
PUT FORTH CONSIDERATIONS AND
OPPORTUNITIES AS THIS PROGRAM IS
BEING EVALUATED AT NIH AND AS
NIH THIX AB THINKS ABOUT THE NET
ITERATION OF IT.
WE THINK THAT OUR PROPOSED
SOLUTION HAS THE POTENTIAL TO
POSITION NIH AND SPECIFICALLY
NCMRR TO PROVIDE THE
REHABILITATION INFRASTRUCTURE
THAT IS COLLABORATIVE,
IMPACTFUL, INNOVATIVE AND
CONDUCIVE TO THE GROWTH OF THE
FIELD, THAT IT WILL ENSURE THAT
PROVIDED PRODUCTS AND SERVICES
MAINTAIN VALUE TO STAKEHOLDERS
ACROSS THE SPECTRUM OF
STAKEHOLDERS IN MEDICAL
REHABILITATION, TO ENSURE THAT
REHABILITATION RESEARCH
INFRASTRUCTURE STAYS RESPONSIVE
TO THE COMMUNITY'S EVOLVING
NEEDS, AND TO HELP DESIGN FUTURE
SYSTEMS THAT PROVIDE RESEARCHERS
WITH THE TOOLS AND RESOURCES
THEY NEED TO ADVANCE THE FIELD
AND GENERATE IMPACTFUL OUTCOMES.
SO BEFORE WE DISCUSS, I'D LIKE
TO JUST THANK MY CO-CHAIR,
DR. STEPHANIE DELUCA, WHO WILL
BE FACILITATING THE DISCUSSION
WITH ME, AND THANK THE REST OF
THE MEMBERS OF THE WORK GROUP
WHO ARE LISTED ON THIS SLIDE,
BOTH THE BOARD MEMBERS AS WELL
AS THE EX-OFFICIO MEMBERS.
ALL RIGHT.
AND WITH THAT, I THINK I WILL
LEAVE MY SLIDES UP BECAUSE IT
MAY BE HELPFUL TO HAVE THEM, AT
LEAST INITIALLY, ALTHOUGH THEN
AT SOME POINT, I MAY WANT TO
TAKE THEM DOWN SO WE CAN SEE ONE
ANOTHER'S FACES.
SO ERIC, WOULD YOU LIKE
STEPHANIE TO FACILITATE THE
DISCUSSION, I ASSUME?
>>NE, THANK YOU FOR THAT REALLY
NICE OVERVIEW OF THE WORKING
GROUP.
DOES ANYONE HAVE ANY QUESTIONS
FOR DAWN OR STEPHANIE?
>>DAWN, YOU MIGHT WANT TO GO
BACK TO YOUR OPPORTUNITIES SLIDE
OR SOMETHING TO MAYBE --
>>THAT'S A GOOD IDEA.
>>YEAH, THE CONSIDERATIONS
SLIDE, IF WE COULD SEE THAT
AGAIN, THAT WOULD BE GREAT.
>>I WILL GO BACK TO THAT.
ALL RIGHT.
I THINK THIS ONE?
>>YES.
THANK YOU.
>>ALL RIGHT.
IS THAT THE SLIDE, STEPHANIE?
MAYBE I'LL ASK YOU TO LOOK FOR
HANDS.
I KNOW PEOPLE MIGHT NEED TO READ
THESE AGAIN.
>>KATHY?
>>HI.
THANK YOU BOTH.
I'M REALLY HAPPY TO SEE THIS
WHOLE REVIEW.
AND I'M CURIOUS, WHAT IS -- IS
THERE A TIMELINE IN HOW -- LIKE
WHERE THIS WILL BE GOING, WHAT
ARE THE NEXT STEPS?
I APPRECIATE YOU GOT ALL OF THIS
DONE FAIRLY QUICKLY, SO IS THERE
A PLAN FOR HOW ALL OF THIS
INFORMATION WILL BE USED?
>>I CAN TAKE THAT ONE.
THANKS FOR THE QUESTION, KATHY.
SO IT TAKES NIH A COUPLE YEARS
TO PUT TOGETHER A FUNDING
OPPORTUNITY ANNOUNCEMENT, SO WE
WILL TAKE THESE RECOMMENDATIONS
BACK, EITHER AS WHOLE CLOTH OR
IF YOU GUYS HAVE SOME CHANGES TO
THEM OR IF YOU DECIDE AS A BOARD
YOU DON'T SUPPORT THEM.
EITHER WAY, WE WILL TAKE THAT
INFORMATION BACK AND PROGRAM
STAFF WILL BRING THAT TO OUR
COLLEAGUES, BECAUSE I DON'T
THINK WHAT WE SAID HERE WAS A
HANDFUL OF OTHER NIH INSTITUTES
CO-FUND THESE.
SO WE HAVE A RATHER LARGE GROUP
THAT MANAGES THESE WITH
CONTRIBUTIONS SCIENTIFICALLY AND
FINANCIALLY FROM OTHER
INSTITUTES.
SO WE'LL ALL TAKE THIS
INFORMATION BACK AS WE THINK
ABOUT WHAT OUR PLAN FOR THE NEXT
ITERATION WILL BE.
WE'RE HALFWAY THROUGH A
FIVE-YEAR CYCLE, SO NO, YOU
WON'T SEE THE OUTPUT OF THIS FOR
A FEW YEARS, BUT IT TAKES US
THAT MUCH TIME TO KIND OF
PROCESS, IF THAT MAKES SENSE.
>>OKAY, THANK YOU.
>>AND AT THE END OF OUR
DISCUSSION TODAY, WE WILL BE
VOTING AS A BOARD ON WHETHER TO
PUT FORTH THESE, ACCEPT THESE AS
THEY ARE TO MAKE SOME CHANGES
AND RECOMMEND THEM OR TO GO BACK
TO THE DRAWING BOARD.
SO WE'LL MAKE THAT -- TAKE A
VOTE ON THAT RECOMMENDATION.
>>ROBERT?
LOOKS LIKE YOU'RE UP.
>>YEAH, I GUESS I'M ON CAMERA,
RIGHT?
I MEAN, THIS LOOKS GREAT.
I WANTED TO MAKE A COMMENT,
BEING SOMEBODY WHO'S SPENT TIME
KIND OF TRAVERSING THE
TRANSLATIONAL SPECTRUM AND
LATELY I'M DOING INTERVENTION
WORK, YOU KNOW, I'VE THOUGHT A
LOT ABOUT WHAT HAPPENS AFTER
INTERVENTIONS.
AND I THINK THAT THAT -- I'VE
SEEN SOME ARTICLES ON
IMPLEMENTATION SCIENCE.
WHEN I THINK ABOUT OT/PT/SPEECH,
WHAT REALLY IS IMPORTANT FOR THE
DISSEMINATION AND INCORPORATION,
I MEAN, I THINK THE MOST USEFUL
INTERVENTION WORK IS
INTERVENTION WORK THAT DEVELOPS,
YOU KNOW, CONCEPTS OF
INFORMATION -- AND INFORMATION
THAT THERAPISTS CAN EMPLOY,
VERSUS, YOU KNOW, SOME KIND OF
THERAPEUTIC PACKAGE THAT'S GOT
TO BE DELIVERED LIKE A BETTY
CROCKER COOKBOOK.
SO HOW DO YOU GET THAT?
I'VE SPENT A LITTLE TIME
THINKING ABOUT THIS AND JUST
REMEMBERING WHEN I WAS A
THERAPIST AND SEEING WHAT GOES
ON, IT SEEMS TO ME CONTINUING
MEDICAL EDUCATION AND
TRADITIONAL EDUCATION ARE THE
BEST WAYS TO DO THIS, AND SO I
JUST WONDER WHETHER THE
INITIATIVES TAKEN IN
IMPLEMENTATION WORK ARE FOCUSING
ON THE TRANSLATION OF
INTERVENTION IDEAS, OUTCOMES AND
INFORMATION THROUGH KIND OF
TRADITIONAL SYSTEMS LIKE THAT.
GLM I THINK
>>I THINK YOU RAISE A REALLY
IMPORTANT POINT AND THAT SPEAKS
TO THE VALUE OF IMPORTANT
STAKEHOLDERS IN OUR RESEARCH
PROCESSES NEED TO BE CLINICIANS,
OR WHOEVER IS USING THESE
RECOMMENDATIONS IN ADDITION TO
THE MEDICAL POPULATION AFFECTED
BY THE CONDITION AND THAT OUR
INTERVENTIONS WILL HAVE MORE
IMPACT POTENTIALLY IF WE INCLUDE
THOSE WHO WILL USE THOSE
INTERVENTIONS AS PART OF THE
PROCESS OF DEVELOPING AND
TESTING INTERVENTIONS.
SO THAT'S -- I JUST WANT TO
HIGHLIGHT THAT, I WONDER WHAT
OTHER THOUGHTS STEPHANIE OR
OTHERS HAVE IN RESPONSE.
>>THAT'S TRUE.
CAN I JUST COMMENT ONE THING, IS
THERE -- LIKE WHEN ONE -- YOU
KNOW, I'VE NEVER HAD AN
IMPLEMENTATION GRANT AND I KNOW
THEY'RE AVAILABLE NOW, ARE THESE
COMPONENTS IN IMPLEMENTATION
GRANTS FOCUSING ON DISSEMINATION
THROUGH THESE TYPES OF
CONTINUING EDUCATION, AND
TRADITIONAL EDUCATION SYSTEMS?
>>I THINK THAT'S A QUESTION I'M
NOT SURE THE ANSWER TO.
OTHERS?
>>I THINK IT DEPENDS ON THE
GRANT MECHANISM ITSELF, BUT I'M
NOT THE PERSON TO ASK.
BUT I WILL SAY THAT YOUR POINT
ALSO GOES TO THE CONCEPT OF
BEING IMPACTFUL.
I MEAN, I THINK THAT WAS ONE OF
THE THINGS THAT WE AS A GROUP
REALLY THOUGHT THAT WE NEEDED TO
AT LEAST BETTER UNDERSTAND WHAT
WAS BEING FUNDED AND HOW THESE
INFRASTRUCTURE PROJECTS COULD
CREATE MORE IMPACTFUL RESEARCH,
SO I THINK THAT'S PART OF
WHAT -- OF YOUR COMMENT AS WELL.
>>CAN I ADD SOME BACKGROUND TO
THAT?
FIRST I WANT TO REMIND PEOPLE
THAT NIH'S JOB IS NOT CONTINUING
EDUCATION CLINICAL TRAINING.
BUT YOU'RE CERTAINLY RIGHT THAT
FOR RESEARCH TO HAVE AN IMPACT,
ONE OF THE LEVELS HAS TO IMPACT
THAT.
SO THAT IS A FAIR COMMENT.
I SHOULD MENTION THAT IN THE
CURRENT ROUND OF SIX CENTERS
THAT ARE FUNDED, THERE'S ONE OF
THEM THAT JUST HAPPENED TO COME
UP WITH THE TOPIC THEMSELVES OF
RESEARCH DISSEMINATION.
TRANSLATION AND DISSEMINATION AS
THEIR GOAL.
AND THEY CONVINCED THEIR
COLLEAGUES THAT THAT SHOULD BE A
CENTER.
SO ONE OF OUR CURRENT CENTERS IS
ACTUALLY TAKING THAT ON AS A
FRONTAL ASSAULT AS THEIR DIRECT
MISSION.
SO JUST WANTED TO ADD THAT
BACKGROUND.
>>SORRY, FRANCISCO, I'M GOING
TO JUMP IN ONE SECOND.
MOST OF THE IMPLEMENTATION WORK
RELATED TO REHAB AND BROADLY IS
IN THE NIH COLLABORATORY, WHICH
WAS A COMMON FUND PROGRAM AND IS
NOW RUN OUT OF NCCIH, AND MOST
OF THAT WORK IS ABOUT
IMPLEMENTING IN HEALTH SYSTEMS.
SO HOW DO YOU TAKE THE RESEARCH
INTERVENTION AND PUT IT IN AN
EHR-DRIVEN PROCESS IN A HEALTH
SYSTEM THAT EDUCATION HAPPENS
WITH STAFF AT THAT LEVEL.
>>FRANCISCO?
>>YES, THANK YOU.
THANK YOU FOR THIS GREAT
WHIRLWIND OF A BRAINSTORMING ON
THESE VERY CRITICAL ISSUES.
I JUST WANTED MAYBE SOME
CLARIFICATION.
ON SLIDE 5, THERE IS MENTION OF
IMPAIRMENT-BASED CENTERS,
WHICH -- AND THEN OPPORTUNITY
NUMBER ONE TALKS ABOUT REHAB
RESEARCH BEING SILOED BY
DISCIPLINE OR DISEASE.
SO I'M TRYING TO UNDERSTAND IF
WHAT'S ON SLIDE 5 HAS
IMPAIRMENT-BASED CENTERS, IS
THAT SOMETHING THAT IS CURRENTLY
BEING PROMOTED, AND THAT SEEMS
LIKE A GOOD IDEA BECAUSE IT WILL
LEAD TO RESULTS QUICKLY AND SO
I'M JUST TRYING TO SEE HOW THIS
INTERACTS WITH THE NEED FOR
INTERDISCIPLINARY MULTI-DISEASE
APPROACHES TO REHAB.
I'M JUST TRYING TO UNDERSTAND
THAT.
>>SO THE EARLIER SLIDE, THAT
CAME FROM FEEDBACK THAT WAS
GATHERED FROM THE REQUEST FOR
INFORMATION, AND AS YOU'RE
POINTING OUT, THERE WAS SOME
FEEDBACK THAT OBTAINING --
LOOKING AT IMPAIRMENT BASED OR
POPULATION BASED WORK WOULD BE
IMPORTANT.
I THINK AS A GROUP, WE THOUGHT
THAT WE DIDN'T WANT TO PRESCRIBE
ANY PARTICULAR DISEASE GROUPS,
POPULATIONS, IMPAIRMENT TYPES,
BECAUSE WE THOUGHT IT WAS
IMPORTANT TO REALLY NOT
ENCOURAGE -- WE WANTED TO KEEP
IT BROAD AND WE WANTED TO
ENCOURAGE MORE CROSS
DISCIPLINARY, INTERDISCIPLINARY
RESEARCH.
THAT'S NOT TO SAY THAT THERE
MIGHT NOT BE SPECIFIC, YOU KNOW,
DISEASE GROUP WHERE YOU CAN HAVE
VERY INTERDISCIPLINARY RESEARCH
GOING ON WITHIN IT.
SO I THINK WE WANTED TO AVOID
PRESCRIBING ANY SPECIFIC
POPULATIONS.
OTHERS FROM THE COMMITTEE WANT
TO ADD IN?
ON THAT?
THANK YOU FOR THAT COMMENT AND
QUESTION.
OTHER QUESTIONS?
OTHERWISE I HAVE A QUESTION FOR
THE GROUP CERTAINLY, BUT FIRST
DOES ANYONE ELSE HAVE ANY
COMMENTS SO FAR?
SO I GUESS A QUESTION THAT WE
WOULD LIKE TO DISCUSS WITH YOU
IS WHAT DEFINES OR HOW DO YOU
DEFINE HIGH QUALITY IMPACTFUL
RESEARCH?
WHAT ARE PEOPLE'S THOUGHTS ON
THAT?
MILLION DOLLAR QUESTION OR
MULTIMILLION DOLLAR QUESTION?
ANYONE WILLING TO TAKE A
VENTURE?
WE COULDN'T COME UP WITH THE
ANSWER IN MEETINGS OURSELVES.
I THINK WE HAD LOTS OF IDEAS BUT
WE'D LOVE TO HEAR FROM YOU.
>>I FEEL LIKE IT NEEDS TO BE --
THERE'S PROBABLY SEVERAL
DIFFERENT CRITERIA TO DEFINE
WHAT HIGH QUALITY RESEARCH WOULD
BE.
I FEEL LIKE REHABILITATION
RESEARCH HAS THIS LIMITATION
THAT WE HAVEN'T HAD AN FDA THAT
HAS GIVEN US GUIDELINES OF WHAT
BAR WE NEED TO REACH TO GET TO
SOMETHING THAT IS IMPACTFUL FOR
THE COMMUNITY.
SO I THINK HIGH QUALITY
RESEARCH, YOU HAVE TO HAVE, YOU
KNOW, I GUESS OUTCOMES THAT ARE
OBJECTIVE AND MEASURABLE IN SOME
WAY.
I DON'T KNOW, I THINK MAYBE THAT
WOULD BE -- I DON'T KNOW, WHAT
DO OTHERS THINK IN TERMS OF --
THAT SEEMS LIKE AN IMPORTANT ONE
TO START WITH.
>>OTHERS?
>>I WANT TO ADD TO THE -- SEE
IF I CAN PROMPT SOME MORE
DISCUSSION ON THIS.
WHOSE PERSPECTIVE SHOULD THE
IMPACT BE?
SHOULD IT BE THE RESEARCHERS,
SHOULD IT BE THE PARTICIPANTS,
SOME COMBINATION?
I MEAN, THINK ABOUT IT IN THOSE
TERMS.
BOB?
>>WHEN I THINK OF HOW I JUDGE
THE IMPACT OF RESEARCH, YOU
KNOW, IT'S HARD TO DO
IMMEDIATELY, BUT I THINK IT HAS
TO DO WITH HOW GENERATIVE YOUR
RESEARCH IS, AND EITHER
STIMULATING OTHER SCIENTISTS TO
TAKE OFF ON IT AND STUDY SIMILAR
THINGS, OR IMPACT IN TERMS OF
INCORPORATION INTO, YOU KNOW, OR
TRANSLATION INTO, YOU KNOW, THE
CLINIC.
BUT I DON'T THINK -- I THINK
IT'S HARD OR IMPOSSIBLE TO JUDGE
IMPACT BEFORE THERE'S BEEN A
CHANCE FOR THE IMPACT TO OCCUR.
>>AND I AGREE WITH THAT, BUT I
WILL SAY THAT ONE OF THE THINGS
WE TALKED ABOUT AS A COMMITTEE
IS THAT, YOU KNOW, WHILE WE WANT
TO THINK ABOUT MEASURABLES AND
HOW WE MEASURE THE IMPACT OF THE
INFRASTRUCTURE, WE ALSO THOUGHT
THAT MAYBE THE CONCEPT OF IMPACT
SHOULD BE SOMETHING THAT AN
APPLICANT FOR AN INFRASTRUCTURE
GRANT MIGHT NEED TO PROPOSE,
THAT THEY NEED TO -- THAT IT
MIGHT NEED TO BE FLEXIBLE IN
THOSE TERMS AND THAT THEY
THEMSELVES HAVE TO EXPLAIN AND
JUSTIFY WHY WHAT THEY'RE
PROPOSING IS IMPACTFUL.
SO I DON'T KNOW IF PEOPLE HAVE
THOUGHTS ABOUT THAT AS WELL.
>>AND LET ME ADD THE QUO ABOUTN
ABOUT THE TIME RANGE OF THE
IMPACT, THAT'S ALSO A VARIABLE.
>>STEPHANIE, I AGREE WITH THAT
COMMENT.
AS CAME UP IN DISCUSSIONS WHERE
IT'S HARD FOR AN RFA OR A GROUP
TO ANTICIPATE ALL AREAS OF
RESEARCH, IT'S REALLY HARD FOR
US TO ANTICIPATE ALL AREAS OF
IMPACT.
I THINK BEING FLEXIBLE AND THEN
ASSESSING IF THE IMPACT THAT'S
PROPOSED IS INDEED MEANINGFUL
ENOUGH WOULD BE A GOOD WAY TO GO
AS OPPOSED TO CLAIMING YOU HAVE
TO HAVE IMPACT IN THIS AREA OR
THAT AREA.
>>FRANCISCO?
>>YES, THANK YOU.
I WANTED TO ASK ABOUT A SLIGHTLY
DIFFERENT TOPIC, SO MAYBE I CAN
WAIT AND MAYBE LEWIS HAS A
COMMENT TO THE CURRENT TOPIC?
>>LEWIS?
>>SORRY, I WAS TRYING TO GET
THERE.
IT IS A LITTLE MORE DIRECTLY
RELATED TO THIS.
I THINK I AGREE WITH THE
COMMENTS THAT HAVE BEEN SAID
BEFORE ABOUT, YOU KNOW, THE
TIMELINE A BIT ABOUT
UNDERSTANDING IMPACTFUL, BUT I
THINK IT'S EVEN MORE CHALLENGING
WHEN YOU'RE TRYING TO DO PROOF
OF CONCEPT MECHANISTIC STUDIES
OR FOR A LOT OF THE WORK THAT
YOU'RE DOING, EVEN IF IT'S IN
HUMANS, RIGHT?
YOU KNOW, HUMAN STUDIES THAT ARE
VERY MECHANISTIC OR ENGINEERING
STUDIES THAT ARE INITIALLY
TRYING TO DEVELOP, YOU KNOW,
EARLY PROTOCOLS AND EARLY
TECHNOLOGIES TO HELP ADDRESS THE
LONG TERM NEED.
I THINK SOMETIMES -- AND THIS IS
A TERM THAT I HEARD IN A
SEPARATE CONVERSATION, WAS
SOMETHING THAT IS -- INSTEAD OF
THINKING ABOUT IT IN TERMS OF
HIGH QUALITY OR IMPACTFUL, BUT
IT'S MORE DIRECTIONAL.
IT'S CLEAR THAT IT'S GOING IN A
PARTICULAR SPACE, IT IS CLEAR
THAT THERE'S AN INTENTION BEHIND
IT, YIELDING PARTICULAR PROMISE
FOR A PARTICULAR GROUP OF
PEOPLE, WHETHER IT'S AN
UNDERSERVED DISEASE OR
PATHOLOGY, OR IF IT'S ONE THAT
IS HIGHLY RESEARCHED BUT IT'S
LOOKING AT SOMETHING FROM A NEW
ANGLE, THOSE ITERATIVE
PROCESSES, I THINK ARE PART OF
THAT DIRECTIONAL KIND OF
CONCEPTUALIZATION THAT I THOUGHT
WAS KIND OF AN INTERESTING WAY
TO THINK ABOUT IT BEYOND JUST
KIND OF IMPACTFUL WHICH IN MOST
PEOPLE'S MINDS GOES TO LIKE AN H
INDEX OR CITATION COUNTS OR THE
FACT THAT YOU WERE ABLE TO PULL
OFF AN R01 FROM IT.
>>ALSO MAKES ME THINK OF TWO
THINGS WE'VE TALKED ABOUT YOUR
COMMENT, ONE IN TERMS OF IMPACT,
YOU KNOW, HOW DO WE COMMUNICATE,
IF IT EARLY IN THE SCIENTIFIC
PROCESS, IF IT'S BENCH SCIENCE,
HOW DO WE COMMUNICATE TO
STAKEHOLDERS AND, YOU KNOW,
REVIEW GROUPS HOW HEADED IN THIS
DIRECTIONAL RESEARCH MAY HAVE
DOWN THE LINE OUTCOMES THAT ARE
IMPORTANT TO THE PEOPLE WHO
WOULD BE IMPACTED BY ANY
INNOVATIONS OR NEW TECHNIQUES,
REHABILITATION TECH TECH NEEKS.
TECHNIQUES.
THAT IDEA OF WE NEED TO BE MAYBE
BETTER AT COMMUNICATING WHY SOME
OF THESE THINGS ARE IMPORTANT,
GIVEN THEY MAY BE A FEW STEPS
OUT BEFORE ACTUALLY HAVING HEED
YAMEDIAL REAL WORLD IMPACT, ANDI
THINK AGAIN JUST THAT IDEA THAT
WE NEED TO BE INCLUDING DIVERSE
GROUPS OF PEOPLE INCLUDING THE
PEOPLE WITH THE CONDITIONS WE
STUDY AS PART OF THE PLANNING
PROCESS, I WOULD ARGUE EVEN IN
BENCH SCIENCE, SO SHARING A
LITTLE BIT OF MY BIASES HERE.
KATHY, ARE YOUR COMMENTS RELATED
TO IMPACT?
>>BASICALLY WHAT YOU JUST SAID,
I THINK WE HAVE TO REMEMBER, WE
ALL DO RESEARCH IN OUR LITTLE
AREA, BUT WE HAVE TO MAKE
WHATEVER IMPACTFUL RESEARCH IT
IS, IT NEEDS TO BE SOMEWHAT
GENERALIZABLE OR, YOU KNOW, SO
IT CAN BE USEFUL FOR LOTS OF
DIFFERENT, YOU KNOW, I GUESS --
I DON'T KNOW IF I WOULD EVEN USE
THE WORD PATHOLOGIES BUT MAYBE
DIFFERENT LIMITATIONS THAT
PEOPLE HAVE.
>>FRANCISCO?
>>YES, THANK YOU FOR THOSE
OTHER COMMENTS.
I JUST WAS LOOKING AT THE
PROPOSAL SOLUTIONS AND THOSE ARE
ALL, OF COURSE, VERY TIMELY.
THE ONE THAT TO ME IS -- STANDS
OUT AS KIND OF INNOVATIVE THAT
MAY NEED A LITTLE WORK TO HASH
OUT IS NUMBER FIVE ABOUT NIMBLE
FUNDING.
BECAUSE AS WE KNOW, REQUEST FOR
PROPOSALS, ET CETERA, THEY
TAKE -- THEY WORK IN THE SCALES
OF A FEW YEARS TYPICALLY, SO HOW
WOULD A LANDSCAPE OF NIMBLE
FUNDING LOOK LIKE AND SO -- ARE
THERE SOME THOUGHTS ABOUT KINDS
OF MECHANISMS DIFFERENT FROM
WHAT ARE CURRENTLY AVAILABLE
WOULD BE NIMBLE FUNDING?
I THINK IT'S A TOPIC THAT I'M
VERY CURIOUS ABOUT BECAUSE I
THINK IT'S VERY INNOVATIVE.
>>I'M GOING TO JUMP IN FRONT OF
THAT BUS.
SO IT CAN MEAN A LOT OF THINGS,
AND AGAIN, WE HAVEN'T CLEARED
ANY OF THIS AS A CONCEPT,
THERE'S NO RFA WRITTEN YET SO WE
HAVE TO BE VERY GENERAL, SO FOR
EXAMPLE, FROM AN NIH
PERSPECTIVE, WE DO ONE CALL FOR
PROPOSALS EVERY FIVE YEARS, AND
WHAT COMES IN IS WHAT GETS
FUNDED FOR FIVE YEARS, AND
THERE'S NOTHING THAT WE'RE DOING
IN BETWEEN THAT.
SO IN THAT SENSE, WE ARE KIND OF
LOCKED IN.
SO IS THAT SOMETHING WE NEED TO
THINK DIFFERENTLY ABOUT HOW WE
SET UP THE STRUCTURE OF MULTIPLE
CENTERS OR MULTIPLE SITES, LET'S
SAY.
THE OTHER THING THAT WE HEARD A
LOT IN THE REQUEST FOR
INFORMATION IS THAT THEY LOVED
PILOT FUNDS, THAT THE PILOT
FUNDING PROGRAM WAS REALLY
IMPORTANT, BUT WE HAVE SOME
LIMITS ON THAT, AND IS THERE
MORE FLEXIBILITY IN PILOT
FUNDING DISCRETION GIVEN TO THE
CENTERS INSTEAD OF GOING THROUGH
THAT LONGER PROCESS AND GETTING
FUNDED FROM NIH DIRECTLY, AND
THEN THE THIRD THING IS THAT AS
SCIENCE CHANGES, THERE ARE
MECHANISMS THAT HAVE MORE OR
LESS ROLE OF NIH IN THEM.
SO THERE ARE GRANTS, THERE ARE
COOPERATIVE AGREEMENTS, THERE
ARE CONTRACTS, AND EACH OF THOSE
HAS MORE OR LESS INVOLVEMENT OF
NIH STAFF, AND IF WE NEED TO
MAKE A CHANGE OR THERE IS A NEW
OPPORTUNITY OR A NEW PANDEMIC OR
A NEW WHATEVER, DIFFERENT LEVELS
OF NIH INVOLVEMENT IN A
MECHANISM FROM THE BEGINNING
WOULD ALLOW FOR MORE
FLEXIBILITY.
SO THAT BULLET IS DOING A LOT OF
LIFTING THERE.
IF THAT HELPS.
>>GREAT.
QUESTION FOR THE GROUP ALONG A
LITTLE DIFFERENT LINE.
WHAT FEEDBACK DO YOU HAVE IN
TERMS OF WHAT'S WORKED WELL WITH
THE CURRENT CENTERS AND ARE
THERE CRITICAL AREAS OF
INFRASTRUCTURE THAT WE ARE
MISSING, THAT WE JUST
OVERLOOKED?
>>AND THIS CAN BE TIED BACK
INTO TERESA'S EARLIER REPORT ON
SOME OF THE NCMRR AND NIH
STRATEGIC PLANNING ABOUT WHAT
BROAD AREAS IN THAT WE SEEM TO
BE UNDERRESEARCHED IN.
>>ANYONE?
I THINK WE COVERED THEM ALL.
FOR THOSE OF YOU WHO HAVE LOOKED
AT OR UTILIZED THE CURRENT
CENTERS, WHAT HAVE YOU LIKED
ABOUT THOSE, WHAT HAVE YOU USED?
I MEAN, I KNOW I'VE CERTAINLY
SENT TRAINEES TO THE PILOT
FUNDING OPPORTUNITIES ACROSS
DIFFERENT CENTERS.
BUT WHAT ABOUT OTHERS?
ANYONE?
FOR THOSE OF YOU WHO HAVE HAD A
CENTER IN THE PAST, OR CURRENT,
BEEN PART OF A CENTER, ANY
FEEDBACK?
HERE'S YOUR CHANCE.
>>THERE'S ALSO THE BALANCE
BETWEEN NIH NOT BEING
PRESCRIPTIVE ABOUT SAYING WHAT
WE'D LIKE TO SEE, AND HAVING YOU
TAKE WHAT YOUR BEST RESOURCES
AND SUPERPOWERS MIGHT BEST BE
TRAINING, AND ALSO WHAT IS
TEACHABLE?
SO THAT'S ALL PART OF THE
DISCUSSION.
>>I CAN KIND OF START THE
DISCUSSION.
I THINK THERESA HIT ON ONE OF
THE THINGS THAT HAS BEEN
CHALLENGING FROM TIME TO TIME
WITH THE CENTER THAT I'M
INVOLVED WITH, AND THAT IS THE
FLEXIBLE FUNDING.
SO WE HAVE TENDED TO THINK ABOUT
AND NIH HAS TENDED TO THINK
ABOUT THE FUNDING PRIMARILY
BEING FOR YOUNGER INVESTIGATORS,
GOING THROUGH A SET OF RULES AND
THINGS OF THAT NATURE, BUT
REHABILITATION IS A LITTLE BIT
UNIQUE IN OTHER -- FROM OTHER
DISCIPLINES, AND SO YOU KNOW,
ARE THERE PARTICULAR ASPECTS OF
FLEXIBILITY THAT INFRASTRUCTURES
NEED WITH PILOT FUNDING?
MAYBE THAT'S A QUESTION TO THINK
ABOUT.
THEN THE OTHER TOPIC THAT I
THINK -- I WONDER ABOUT, IF WE
COULD DISCUSS, IS THIS CROSS
DISCIPLINARY COLLABORATION.
I THINK IN REHABILITATION, WE
OFTEN THINK ABOUT BUILDING ON
OTHER PEOPLE'S SCIENCE FOR LACK
OF A BETTER TERM, AND WE OFTEN
DON'T THINK ABOUT HOW OUR
SCIENCE CAN TEACH OTHER FIELDS.
FOR EXAMPLE, IN LEARNING AND
EDUCATION.
I ANDAND I THINK WE HAVE A LOT O
OFFER.
SO SHOULD WE BE PULLING BROADLY
FROM DISCIPLINES ABOUT WHAT WE
CAN TEACH THEM AND HOW WE CAN
BRING THEM INTO EVEN OUR
INFRASTRUCTURE PROJECTS.
KATHY?
>>YES, I THINK WHAT THAT MAKES
ME THINK ABOUT IS TRYING TO BE A
LITTLE BIT MORE INTEGRATED WITH
SOME OF OUR STATISTICS
COLLEAGUES AND TRYING TO --
BECAUSE I THINK WHAT MAKES OUR
RESEARCH SLIGHTLY DIFFERENT,
RIGHT, IS IT'S REALLY HARD TO
MAKE A CONTROL GROUP REALLY BE A
CONTROL IF YOU'RE DOING A
BEHAVIORAL INTERVENTION.
AND MAKING SURE THAT -- I THINK,
YOU KNOW, I THINK HAVING THAT
STATISTICAL OVERLAY IS REALLY
IMPORTANT TO BE SURE WE'RE
POWERED CORRECTLY AND WE'RE
THINKING ABOUT HOW TO GET THE
MOST FOR THE AMOUNT OF MONEY
THAT WE HAVE FOR THESE STUDIES.
THE SO THAT'S WSO THAT'S WHAT IN
YOU WERE TALKING ABOUT KIND OF
BEING COLLABORATIVE WITH OTHER
DISCIPLINES.
>>I REMEMBER THIS STARTED ALSO,
I COULDN'T AGREE WITH YOU MORE.
I DO THINK WE NEED TO BE
COLLABORATIVE ACROSS DISCIPLINES
AND PULL THEM INTO OUR FIELD,
AND AGAIN, I THINK WE HAVE A LOT
TO OFFER THEM.
THAT'S A REASON FOR THEM TO COME
INTO OUR FIELD.
BUT I GO BACK TO THIS IDEA OF
FLEXIBILITY IN OUR FUNDING.
YOU KNOW, ONE OF THE THINGS AS
DAWN MENTIONED IS WE OFTEN THIN
PILOT AWARDS AND THINGS OF THAT
NATURE FOR BEING FOR YOUNG
INVESTIGATORS, BUT
REHABILITATION IS A LITTLE BIT
UNIQUE BECAUSE UNFORTUNATELY WE
DON'T OFTEN HAVE A LARGE POOL OF
YOUNG INVESTIGATORS, AND WE ALSO
HAVE SOMETIMES LIMITED PLACES TO
APPLY FOR FUNDS.
SO SHOULD OUR FUNDING
OPPORTUNITIES -- SHOULD OUR
PILOT FUNDING BE DEDICATED TO
JUST YOUNG INVESTIGATORS OR
SHOULD WE -- IS THERE MORE IDEAL
TIME OR SHOULD WE BROADEN THAT?
SO THOSE ARE ALL QUESTIONS THAT
WE TALKED ABOUT.
PEPE?
>>SO LOOKING AT THESE
OPPORTUNITIES, I'D LIKE TO THINK
IN A DIFFERENT WAY IN TERMS OF A
ROAD MAP FOR US.
SO I THINK WE AGREE THAT THRAS
INTETHERE'SINTEREST IN NUMBER T,
INTEREST THAT HAS HAD HIGH
IMPACT.
FOR THAT, WE NEED NUMBER ONE, WE
NEED TO PROMOTE THE
COLLABORATION, AND THAT CAN BE
EXPRESSIVE AND HARD.
TO ACHIEVE THAT, WE NEED NIMBLE
FUNDING, AND -- NETWORKS OR
OPPORTUNITIES TO BRING PEOPLE
FROM DIFFERENT AREAS, WE NEED
ALSO IMPLEMENTATION SCIENCE
EXPERTS, AND OF COURSE YOU NEED
TO DO IT WELL AND WE INCLUDE,
YOU KNOW -- INCLUSIVE, THAT'S
NUMBER SIX, THEN THAT'S GOING TO
LEAD TO NUMBER TWO, WHICH IS
HIGH QUALITY DATA, WE CAN IN
TURN INFORM -- SO I THINK THAT,
YOU KNOW, WITH SOME
REARRANGEMENT OF THESE, WE CAN
SEE THAT THERE'S THE BEGINNING
OF A ROAD MAP HERE, BUT I THINK
NUMBER ONE, IT'S GOING TO BE
REALLY IMPORTANT TO BRING
PEOPLE, AND AGAIN NUMBER FIVE IS
ONE OF THE WAYS TO ADDRESS THAT.
SO FOR EXAMPLE, WE'RE THINKING
ABOUT -- WE HAVE THESE CENTERS
THAT THEY ARE ALREADY
INTERACTIVE AT SOME LEVEL BUT
HOW CAN WE INCREASE THAT LEVEL
OF INTERACTION, NOT ONLY WITHIN
THE NIH CENTERS BUT WITH OTHER
CENTERS THAT MIGHT BE FOCUSING
ON THE TECHNOLOGY PART OR IN THE
TRANSLATIONAL PART OR SOME
OTHER, YOU KNOW, EVEN INDUSTRY,
RIGHT, HOW DO WE ACCELERATE THIS
BY PARTNERING WITH INDUSTRY.
IT'S NOT VERY CLEAR HERE ON
THIS, BUT IT'S THERE.
ANYWAY, THOSE ARE MY THOUGHTS ON
THIS.
>>THANK YOU.
LEWIS?
>>YEAH, HI.
I AGREE WITH A LOT OF WHAT PEPE
SAID.
I WAS KIND OF GOING TO SAY
SOMETHING QUITE SIMILAR.
YOU KNOW, I THINK ONE OF THE
THINGS THAT I THINK IS
FASCINATING WITH THE FIELD,
PERHAPS, IT'S OBVIOUSLY GOOD TO
PROMOTE EARLY STAGE
INVESTIGATORS, PEOPLE THAT ARE
MAYBE COMING AT THINGS AS LIKE A
FI SIGH TERRORPHYSIATRIST -- SOS
SOME FEEDBACK FROM SOMEWHERE,
BUT I THINK IT'S ALSO IMPORTANT
TO FIND WAYS TO MAYBE ATTRACT
PEOPLE INTO THE FIELD, RIGHT,
ALL KIND OF -- WHAT I WAS KIND
OF ALLUDING TO BEFORE, THE BASIC
SCIENTIST WHO IS DOING A LOT OF
MECHANISTIC STUDIES, OR THE
ENGINEER WHO WAS REALLY
DEVELOPING A LOT OF DEVICES AND
TECHNOLOGIES THAT MAY TEND TO
INTERACT WITH OTHER FEDERAL
ORGANIZATIONS, MAY INTERACT MORE
WITH NSF, FOR EXAMPLE, HOW DO WE
ATTRACT OR ENGAGE THOSE
INDIVIDUALS FOR THESE TYPES OF
OPPORTUNITIES AS WELL, ARE THERE
BETTER WAYS TO RECRUIT
INDIVIDUALS THAT COME FROM THOSE
BACKGROUNDS INTO THE
REHABILITATION FIELD, BECAUSE
OFTENTIMES THERE IS CERTAINLY
TRANSLATIONAL OPPORTUNITY
A.T.
THE OTHER THING, I MENTIONED IT
BEFORE ABOUT MORE OF A PUBLIC
HEALTH PERSPECTIVE, I THINK THAT
REALLY HELPS US WITH POINT SIX,
IT HELPS US WITH POINT THREE IN
TERMS OF HAVING SOME DIRECT
IMPACT INTO THE RIGHT
COMMUNITIES, ARE THERE CENTERS
FOR WHICH PUBLIC HEALTH AND
REALLY UNDERSTANDING THE
POPULATION LEVEL, UNDERSTANDING
OF INEQUITIES, THINGS LIKE THAT
FROM YOUR IMPORTANCE, IT WOULD
BE GREAT TO HAVE THOSE AS A PART
OF THIS TYPE OF COMMUNITY.
SO WE KNOW THAT WE'RE DOING THE
THINGS THAT WE HOPE TO DO AND
OFTEN THE THINGS WE PROMISE TO
DO IN ENGAGING CENTERS, MEETING
THE STANDARD OR THE BAR WITH THE
WORK WE'RE DOING.
>>IF I CAN EXTEND WHAT LEWIS
SAID A LITTLE BIT, HAVING BEEN
AROUND THE FIELD A LONG TIME,
PART OF THE MANTRA IS YOU HAVE
PEOPLE COMMITTED TO SUPPORTING
THE FIELD OF DISABILITY
RESEARCH, HEALTH DISPARITIES,
AND YOU'RE TRYING TO TEACH THEM
TO DO RESEARCH, HOW TO HAVE MORE
RIGOR IN WHAT THEY DO.
YOU ALSO HAVE PEOPLE FROM ALLIED
FIELDS DOING SOME VERY
INTERESTING THINGS AND YOU'RE
TEACHING THEM TO BE EXCITED
ABOUT SOME OF THE QUESTIONS
WE'RE DEALING WITH.
WHAT'S THE ACTIVE INGREDIENT,
HOW DO YOU ISOLATE IT, HOW DO
YOU PROMOTE IT.
AND THE THIRD FUNCTION IS A
MATCH MAKER FUNCTION WHERE YOU
TRY TO HELP TO GET THESE TWO
PEOPLE TO MEET AND SO THOSE ARE
ALL OUT ON THE TABLE, BUT THOSE
ARE MY DIFFERENT WAYS THAT I
THINK -- I TRY TO PROMOTE
TRAINING CAREER DEVELOPMENT AND
SO ON IN THE BROADER REHAPPEN
FIELD.
>>OTHER FEEDBACK?
WE'RE TALKING A LITTLE ABOUT THE
PILOT FUNDING AND WHO TO TARGET
WITH PILOT FUNDING GETTING YOUR
IDEAS, BUT YOU KNOW, IN GENERAL,
FOR THE INFRASTRUCTURE PROGRAM,
WHAT ARE PEOPLE'S THOUGHTS ON,
YOU KNOW, WHO TO TARGET?
SO ONE THING I'M HEARING IS WE
SHOULD BE TARGETING OUTSIDE OF
OUR KIND OF RESEARCH -- WHAT WE
TYPICALLY THINK OF OUR RESEARCH
COMMUNITY AND BROADENING IT,
WHICH I THINK IS A REALLY
EXCITING IDEA TO BRING IN PEOPLE
ABOUT PUBLIC HEALTH OR
DISSEMINATION AND IMPLEMENTATION
SCIENCE EXPERTS, ENGAGEMENT
EXPERTS, BUT WHAT ABOUT -- WHAT
ALSO ABOUT LEVELS IN TERMS OF
BEGINNING, MIDDLE CAREER, YOU
KNOW, ANY STAGE, WHAT ARE
PEOPLE'S THOUGHTS?
OR ANY ADDITIONAL THOUGHTS ON
THAT?
ERIC?
>>LOOKING AT HOW TO RAISE MY
HAND.
SO I THINK IT DEPENDS A LITTLE
BIT ON THE QUESTION, RIGHT?
SO ON THE ONE HAND, THERE'S A
GOAL OF HIGH QUALITY, EYE IMPACT
SCIENCE.
IN THAT CASE, I THINK WE NEED TO
PULL IN WHOEVER WE NEED TO
ACHIEVE THAT GOAL.
SO SOMETIMES IT COULD BE A VERY
SENIOR SCIENTIST WHO TENDS TO BE
OUTSIDE OF OUR FIELD WHO HAS
SOME SKILLS OR KNOWLEDGE THAT
MAYBE WE DON'T TRADITION NAY TRY
HAVE IN THE IMPACT SPACE.
PART OF THE P2C PROGRAM RIGHT
NOW AT THE LAB AT NORTHWESTERN,
I THINK ONE OF THE MOST -- THE
BIGGEST CONTRIBUTIONS WE MAKE IS
ACTUALLY THROUGH NOT REALLY JUST
THE PILOT GRANTS BUT THE
MENTORING THAT GOES ALONG WITH
THOSE PILOT GRANTS.
WE WON'T BE ABLE TO JUDGE, AS
UPON POINTED OUT EARLIER, FOR
SOME TIME IF THAT'S TRULY HAD AN
IMPACT, BUT CERTAINLY IN THE
SHORT TERM IS AT LEAST GIVING
PEOPLE THE COURAGE TO MOVE
FORWARD WITH NEW IDEAS AND
HELPING TO REFINE THOSE IDEAS,
WE HOPE WILL HELP LAUNCH THEIR
CAREERS.
SO I THINK IT'S A LITTLE BIT OF
BOTH, I DON'T THINK IT'S AN
EITHER/OR, I THINK IT DEPENDS ON
WHICH GOAL YOU'RE TACKLING.
THAT'S WHY I LIKE THE SUGGESTION
EARLIER OF ALLOWING APPLICANTS
TO DEFINE WHAT THEY MEAN BY
IMPACT AND THEN WE CAN ASSESS
THEM ACCORDINGLY.
>>GREAT.
OTHER THOUGHTS ON THAT TOPIC?
I THINK KATHY HAS HAD HER HAND
UP BUT I DON'T KNOW THAT I SEE
HER HAND UP NOW.
>>ERIC SAID PRETTY MUCH WHAT I
WAS THINKING TOO, I THOUGHT THAT
COVERED IT.
THANK YOU.
>>WHAT WOULD ATTRACT YOU OR
YOUR TRAINEES OR COLLEAGUES TO
AN INFRASTRUCTURE PROGRAM, TO
USE AN INFRASTRUCTURE PROGRAM
FOR RESOURCES OR TO SUBMIT AN
APPLICATION, OR WHAT WOULD HELP
THOSE?
THINK ABOUT IT FROM THAT
PERSPECTIVE FOR A MOMENT.
ANYONE?
ROBERT?
>>I WOULD THINK IT WOULD HAVE
TO OFFER SOMETHING THAT I JUST
CAN'T GET IN HOUSE.
ONE OF THE THINGS LISTENING TO A
LITTLE BIT OF A DISCUSSION --
NO, I WAS LISTENING TO ALL OF
THE DISCUSSION.
LISTENING TO THE DISCUSSION THAT
HAPPENED A FEW MINUTES AGO, THE
CROSS DISCIPLINARY
COLLABORATION, ONE THING THAT
STRIKES ME AS SOMETHING THAT'S
CONTINUING IN OUR FIELD IS THAT
WE DON'T REALLY HAVE MEETING
THAT DO A GREAT JOB AT THIS
POINT OF INTEGRATING ACROSS THE
TRANSLATIONAL SPECTRUM UNLESS
THEY'RE REALLY BIG MEETINGS LIKE
SFN.
SO WE'VE GOT MORE CLINICAL
MEETINGS AND MORE BASIC
MEETINGS, AND MAYBE IF WE HAD A
LITTLE MORE OF THE WHOLE
TRANSLATIONAL, YOU KNOW,
FOCUSING ON THAT WHOLE
TRANSLATIONAL SPECTRUM AND
MEETINGS, I DON'T KNOW THAT THAT
WOULD POINT ME TO THAT I COULD
TAKE VAC OF ADVANTAGE OF ONE OE
CENTERS, BUT I THINK IT MIGHT BE
QUITE ATTRACTIVE, AND THEY MIGHT
END UP SEEING PEOPLE AT
DIFFERENT PARTS OF THE SPECTRUM
THAT HELP TO FOCUS THEIR
INTEREST IN MAYBE WHAT THESE
CENTERS ARE DOING.
>>THANK YOU.
OTHERS?
THINKING ABOUT MY OWN TRAINEES
AND EARLY CAREER FACULTY AT THE
UNIVERSITY OF WASHINGTON, I
CHAIR OUR DEPARTMENT'S MENTORING
PROGRAM, WHICH IS KIND OF
CROSS-DISCIPLINE FOR ALL OF OUR
FACULTY, AND WE'RE FORTUNATE TO
HAVE A LOT OF RESOURCES IN
HOUSE, BUT I THINK THINGS THAT
WOULD ATTRACT ME OR BE HELPFUL
TO THE PEOPLE I MENTOR AND TO MY
COLLEAGUES, REALLY, I THINK
IMPLEMENTATION AND
IMPLEMENTATION SCIENCE ARE STILL
CHALLENGES FOR THOSE OF US DOING
CLINICAL RESEARCH, SO HELPING
PEOPLE LEARN KIND OF BEST
PRACTICES OR METHODS AROUND
IMPLEMENTATION SCIENCE.
SO I PROBABLY SHOULD GO TO THE
CURRENT NETWORK'S IMPLEMENTATION
TRANSLATION WEBSITE AND SEE
WHAT'S ALREADY THERE, BUT I
CERTAINLY THINK THAT OUR FIELD
COULD BENEFIT FROM MORE THOUGHT
AROUND AND COLLABORATIONS WITH
OTHER AREAS THAT ARE GOOD AT
THAT AS IT GOES TO A POINT MADE
EARLIER ABOUT PUBLIC HEALTH, FOR
EXAMPLE, THEY'RE REALLY EXPERTS
AT IMPLEMENTATION.
SO HOW COULD WE LEARN MORE ABOUT
THAT AND TRANSLATE -- LEARN FROM
INFRASTRUCTURE HOW TO DO A
BETTER JOB AT GETTING SCIENCE
INTO THE HANDS OF THOSE WHO CAN
USE IT.
AND THEN I THINK, YOU KNOW,
PILOT FUNDING HAS BEEN MENTIONED
ALREADY, BUT I THINK THAT IS
REALLY SOMETHING THAT REALLY CAN
DEVELOP IN R01s, OTHER GRANTS,
COLLABORATIONS, IF YOU HAVE
PILOT ME C MECHANISMS.
RALPH?
>>AS PART OF THE INSTITUTIONAL
MEMORY FOR THIS PROGRAM, I WAS
GOING TO ADD, ONE PROGRAM WE HAD
SEVERAL YEARS BACK FOCUSED JUST
ON COMMERCIALIZATION OF DEVICES.
WHICH IS KIND OF ONE SMALL
SUBSET OF TRANSLATIONAL
RESEARCH, BUT IT TOOK ISSUES
LIKE -- WE'RE VERY GOOD AT
DEVELOPING THE PROTOTYPE, BUT WE
DON'T THINK ABOUT THE REGULATORY
ISSUES, THE ACCEPTANCE, THE
COMMERCIALIZATION, AND SO THIS
IS A CENTER THAT TOOK PEOPLE WHO
ARE DEVICE DEVELOPERS AND
EXPOSED THEM TO THE BROADER
CULTURE OF THE FDA REGULATIONS,
APPROVALS, COMMERCIALIZATION,
SEEKING CAPITAL, SO THAT MIGHT
GETTING THINKING ABOUT WHAT
WOULD BE THE BROADER WAY FOR YOU
TO DO TRANSLATION AND BROADER
APPLICATIONS, DISSEMINATION OF
YOUR RESEARCH FINDINGS IN YOUR
ACADEMIC JOURNALS TO SUDDENLY
BRING THEM INTO CLINICAL
PRACTICE, WHAT WOULD BE THE
ANALOGY FOR THAT BROADER FIELD?
>>THOUGHT ON THAT?
>>DAWN AND STEPHANIE, I FEEL
LIKE WE MIGHT BE SLOWING DOWN A
LITTLE BIT.
WHAT DO YOU GUYS THINK?
>>I JUST LOOKED --
>>JUST SPEAK UP.
>>HERE'S YOUR CHANCE.
>>PEPE?
>>I'LL SHARE MY EXPERIENCE,
BECAUSE I HAVE BENEFITED FROM
CENTERS IN THE PAST WITH PILOTS
THAT THEN BECAME R01s, FOR
EXAMPLE, OR FROM THE PEDIATRIC
MEDICAL DEVICE CONSORTIUM THAT
LED TO, YOU KNOW, WORK TO
ADVANCE MEDICAL DEVICES, BUT
ALSO, YOU KNOW, FROM THE POINT
OF VIEW OF THE P.I., YOU KNOW,
THERE'S STILL A LIMBO BETWEEN --
I'LL JUST PUT IT BLUNT FOR YOU,
THE NIH OR NSF, SO THERE'S STILL
THIS VERY FUZZY LINE HERE, WHICH
I HAVE EXPERIENCED, BY THE WAY,
IN TERMS OF HOW TO TRANSITION,
RIGHT, FROM THE BENCH TO -- TO
THE CLINICAL, IT TAKES A BIG
JUMP THERE, AND THEN YOU WANT TO
POWER THE STUDY OR YOU WANT TO
HAVE OTHER PARTNERS, IT'S HARD.
RIGHT?
SO YOU KNOW, IF I WANT TO USE A
CENTER, I WANT TO BE ABLE TO
HAVE ON DEMAND RESPONSE, TIMELY
AND EFFECTIVE RESPONSE, SO
THAT -- BECAUSE I HAVE A
TIMELINE, I CANNOT WAIT TOO
LONG, AND SO EVEN MAYBE, YOU
KNOW, IF I NEED SOME EXPERTISE
IMPLEMENTATION SCIENCE, YOU
KNOW, REACH OUT TO A CENTER, PUT
THEM ON MY TEAM TEMPORARILY,
TRANSITIONAL POSITION TO FILL
THIS GAP.
SO THERE IS NOT MUCH FLUIDITY, I
THINK.
BETWEEN DIFFERENT AGENCIES, BUT
IT'S GOOD TO KNOW THAT LARGER
INITIATIVES COULD BE VERY
POWERFUL HERE.
ACROSS BOUNDARIES AT ALL LEVELS.
>>ROBERT?
>>GETTING TO RALPH'S QUESTION,
THE DEVICES I IS A GOOD MODEL, T
I THINK DEVICES AND PRODUCTS ARE
KIND OF EASY TO THINK ABOUT.
DEVICES, PRODUCTS, TOOLS LIKE
EVALUATIONS, IT'S KIND OF EASY
TO THINK ABOUT HOW YOU CAN GET
THAT INTO THE CLINIC.
BUT THE MAJORITY OF WHAT'S GOING
ON IN TRANSLATIONAL RESEARCH IN
AT LEAST NEUROREHABILITATION IS
INFORMATION.
AND GETTING THAT INTO THE
CLINIC.
CHANGING THE WAY THAT -- NOT
NECESSARILY GIVING A TOOL, BUT
CHANGING THE WAY THAT THERAPISTS
ARE THINKING ABOUT APPROACHING A
PROBLEM.
I KNOW I'M GOING BACK TO A
COMMENT I MADE BEFORE, BUT I
DON'T THINK WE REALLY HAVE A
GOOD IDEA OF HOW TO TRANSLATE
THESE SUCCESSFUL INTERVENTION
STUDIES INTO INFORMATION THAT
GETS INTO THE CLINIC.
AND I THINK THAT'S WHAT RALPH
WAS ASKING, HOW CAN WE TAKE THAT
KIND OF LINE WHERE WE'VE BEEN
ABLE TO DO THAT WITH -- OR, YOU
KNOW, PEOPLE HAVE BEEN ABLE TO
DO THAT WITH DEVICES AND TAKE
THAT TO A LOT OF THE WORK THAT
WE'RE DOING WHERE IT'S NOT
DEVICES, IT'S NOT CONCRETE
THINGS BUT IT'S INFORMATION.
AND I THINK THAT REMAINS AN OPEN
QUESTION.
>>I THINK MY VIDEO HAS BEEN
STOPPED, SO I THINK I LOST THOSE
THAT MIGHT WANT TO SEE MY FACE.
OKAY, GOOD.
I KNOW IT'S REFLECTIVE, SO
EXCUSE ME FOR THAT.
BUT I HEAR ALL THE -- THESE
CAUTIONS AND I KNOW THERE WERE
SEVERAL SUBGROUP OR -- MEETINGS,
WE DISCUSSED EXTENSIVELY ON
TRANSLATION.
INTO CLINICAL PRACTICE.
AND I WAS PARTICULARLY AN
ADVOCATE FOR RESEARCH THAT DON'T
MAKE IT FROM BENCH SIDE TO
BEDSIDE.
WE NEED TO BE FUNDING MORE
RESEARCH THAT WILL HAVE IMPACT
AND CHANGE THE FACE OF PRACTICE.
I THINK THE CURRENT -- IS, ONE,
THE REVIEW PROCESS IS HEAVY ON
SCIENCE AND MORE ABOUT
EXPLAINING HOW IT WORKS THAN HOW
IT TRANSLATES TO PRACTICE.
AS WE GO ON.
ONE.
TWO, IN THESE FEW SITUATIONS
WHERE INDIVIDUALS HAVE HAD VERY
GOOD OUTCOME AND TRANSLATED TO
PRACTICE, IT BEEN LOCALIZED TO
THE INSTITUTIONS OF SUCH
INDIVIDUALS.
THERE HAS BEEN NO PLATFORM TO
PUT IT ON A BROAD LEVEL THAT
OTHER INSTITUTIONS CAN BENEFIT
FROM IT OR TRY TO IMPLEMENT IT.
THAT'S THE SECOND ONE.
THE THIRD ONE I THINK IS ALSO
THAT THERE IS A NEED FOR
REORIENTATION IN
REHABILITATIONAL MEDICINE
GENERALLY THAT WE DO NOT NEED TO
INVENT O A WHEEL OR TRY TO INVET
A WHEEL THAT HAS BEEN INVENTED.
WE ARE KNOWN TO WANT TO MAKE A
SLIGHT DIFFERENCE TO WHAT
SOMEONE HAS INVENTED OR WANT TO
TRY TO DO SOMETHING THAT IS
UNIQUE TO US.
ALL OF US WILL JUST CONTINUE TO
PROMOTE INDIVIDUALS -- BROADER
APPLICATION OF THE SYSTEM.
SO I THINK IN THE REVIEW
PROCESS, THESE ARE SOME OF THE
THINGS THAT NEED TO BE
INTRODUCED, AS IN WHAT IS THE
PLAN FOR THIS OUT COME TO
EVENTUALLY BE DISSEMINATED?
HOW WILL IT BE IMPLEMENTED IN
CLINICAL PRACTICE?
WHAT IS THE PLAN TO SPREADING
THE OUTCOME BEYOND YOUR OWN
INSTITUTION TO OTHER
INSTITUTIONS IN THE COUNTRY, AND
HOW AVAILABLE TO OTHER
INSTITUTIONS -- THAT IS WHAT
THEY WANT TO DO AND HOW CLBTIVE
WCOLLABORATIVE WOULD YOU BE IN
THOSE AREAS.
I THINK WE STILL NEED THAT,
THERE IS STILL A FAR SEPARATION
BETWEEN WHAT'S GOING ON
SCIENTIFICALLY AND IN THE
RESEARCH WORLD TO STILL WHAT ONE
OBTAINS CLINICALLY AND I THINK
WE NEED TO DO A BETTER JOB OF
THAT.
>>THANK YOU, ABIODUN.
THOSE ARE WELL-TAKEN POINTS.
I DON'T KNOW THAT WE CAN FIX
THEM ALL IN THIS PROGRAM, BUT
WELL TAKEN.
BEFORE WE WRAP UP THIS PART OF
THE AGENDA, AT WHICH POINT RALPH
IS GOING TO ASK FOR A VOTE, SO
PLEASE BE THINKING ABOUT YOUR
FEELINGS ON THIS REPORT.
I WANTED TO TAKE THIS
OPPORTUNITY TO THANK DAWN AND
STEPHANIE FOR CO-CHAIRING THE
WORKING DWREU GROUP, ALL THE MES
OF THE WORKING GROUP WHO CAME
MONTH AFTER MONTH TO HAVE THESE
BIG, BLUE-SKY KIND OF
DISCUSSIONS ABOUT WHERE DOES NIH
GO WITH OUR REHAB
INFRASTRUCTURE, YOU KNOW, WE
COULD HAVE SPENT A BILLION
DOLLARS, I THINK, IN THOSE
DISCUSSIONS ADDRESSING
INCREDIBLE IMPORTANT QUESTIONS.
THIS IS A SIGNIFICANT INVESTMENT
THAT NIH MAKES, ESPECIALLY NCM
RSMES PESH --ESPECIALLY NCMRR, T
THINK IT WOULD BE GOOD
STEWARDSHIP ON OUR PART NOT TO
STOP AND HAVE THIS CONVERSATION
IN A TIME WHEN THERE IS NO
PRESSURE FOR TIME, WE'RE NOT
TRYING TO CRANK SOMETHING OUT
RIGHT AWAY, WE HAVE TIME TO TAKE
A BREATH, SPEND SIX MONTHS
THINKING ABOUT THIS AND TALKING
ABOUT IT, OR YOU GUYS DO, AND
THEN TO GIVE US FEEDBACK.
SO WE KIND OF GAVE YOU A BIG
BROAD CANVAS TO THINK ABOUT AND
TO FILL IN, AND YOU ALL
CERTAINLY DID THAT.
YOU KNOW, I REALLY APPRECIATE
THE PERSPECTIVES AND THE TIME
AND ATTENTION THAT THE WORKING
GROUP MEMBERS PUT IN.
I ALSO HAVE TO THANK OUR
CONTRACTORS WHO REALLY KEPT US
ON POINT AND ORGANIZED, SO THANK
YOU TO THEM.
AS WELL AS THE NCMRR STAFF WHO
HELPED OUT WITH THESE MEETINGS
AND DATA CALLS.
AS I SAID, WE PROBABLY COULD
HAVE SPENT A BILLION DOLLARS, SO
WE WILL TAKE THIS BACK AND AFTER
YOU GUYS VOTE, AND WORK WITH OUR
COLLEAGUES AND SEE WHAT CAN WE
DO WITH THE TOOLS IN OUR TOOLBOX
TO TRY TO ADDRESS THE
OPPORTUNITIES THAT YOU GUYS PUT
OUT BEFORE US AND KNOW THAT WE
PROBABLY -- WE WILL NOT BE ABLE
TO GET EVERYTHING.
BUT THAT DOESN'T MEAN THAT THIS
WAS THE ONLY OPPORTUNITY TO
FORWARD SOME OF THOSE IDEAS THAT
WE COLLECT THESE AND AS OTHER
OPPORTUNITIES COME IN, WE ARE
CONSTANTLY THINKING ABOUT THE
FEEDBACK WE GET FROM YOU GUYS
AND OTHER WAYS TO OPERATIONALIZE
THEM.
RALPH?
>>OKAY.
SO IN CLOSING, ALSO ONE THING WE
MAYBE DIDN'T SAY LOUD ENOUGH IS,
I WANT TO ALSO THANK OUR
COLLEAGUES AT THE OTHER NIH
INSTITUTES, THAT THIS PROGRAM
WAS FUNDED NOT JUST BY NCMRR
THROUGH NICHD, BUT THERE ARE A
NUMBER OF OTHER NIH INSTITUTES
THAT ALSO BELIEVED IN THIS
PROGRAM ENOUGH AND THEY
SUPPORTED IT OVER THE YEARS.
SO A NUMBER OF OTHER INSTITUTES.
IT WASN'T A LARGE NUMBER, BUT IT
WAS A NUMBER.
SO I WANT TO THANK THEM FOR
THEIR PARTICIPATION AND SOME OF
THE PEOPLE AND INSTITUTES THAT
MADE IT HAPPEN ARE ACTUALLY ON
THIS ZOOM CONNECTION.
SO I WANTED TO ACKNOWLEDGE THAT
AS WELL.
AND SO YOU VL THE HAVE THE WHIR
REPORT, I SENT IT OUT TO
EVERYBODY, AND I THANK EVERYBODY
FOR THE DISCUSSION THIS
AFTERNOON.
THERE WAS ACTUALLY A LOT OF
SUBSTANCE IN THE REPORT ITSELF
THAT ALREADY GOT US PARTWAY TO
THE DISCUSSION, AND AS THERESA
INDICATED, IT'S THE BEGINNING OF
A PROCESS OF OUR PLANNING
PROCESS, WHERE DO WE GO WITH
THIS, AND I'M LOOKING FOR A
FORMAL VOTE FROM YOU FOLKS AS
OUR ADVISORY BOARD, AND YOU HAVE
ESSENTIALLY THREE CHOICES.
DO YOU ACCEPT THE REPORT, DO YOU
ACCEPT IT WITH SOME SORT OF
SIGNIFICANT MODIFICATIONS, OR DO
YOU NOT ACCEPT THE REPORT?
AND SO WE'RE GOING TO ASK EACH
OF YOU, WE HAVE THIS FORMAL POLL
UP THERE AND I THINK ALL THE
BOARD MEMBERS SHOULD BE ABLE TO
VOTE FOR THIS.
YOU HAVE ONE OF THOSE THREE
OPTIONS.
WE WILL NOT REVEAL WHO VOTES FOR
WHAT, BUT WE WILL REVEAL THE
TOTALS.
SO CAN YOU ALL PLEASE VOTE.
HOPE THIS WORKS.
>>VOTES ARE COMING IN ON THIS
END.
I'VE GOT 7, 8, 10 VOTED SO FAR,
THEY'RE TRICKLING UP, SO WE'LL
GIVE IT ANOTHER MINUTE AND THEN
I'LL SHARE THE RESPONSES.
>>WE SHOULD HAVE SET UP EARLY
VOTING BUT SOME PEOPLE MIGHT
HAVE A PROBLEM WITH THAT.
>>IT LOOKS LIKE WE HAVE 12
RESPONSES SO FAR.
IF THERE'S ANYONE STILL TO VOTE?
GO AHEAD AND DO SO.
DID YOU WANT TO KEEP WAITING
ANOTHER MINUTE?
IT DOESN'T SEEM TO BE MOVING
FROM 12.
I CAN END AND SHARE THE RESULTS.
>>I THINK THAT'S GOOD.
THANK YOU.
>>OKAY.
>>SO WHAT HAVE WE GOT FOR THE
TOTALS?
SO 83% -- OKAY.
>>IT'S 10 AND 2.
>>OKAY.
IT MAY NOT BE CLEAR TO PEOPLE
THAT -- OKAY.
THE MAKING NO RECOMMENDATION IS
NOT THAT YOU ACCEPT THE REPORT
EN MASSE, IT'S THAT YOU ARE NOT
MAKING ANY POSITIVE
RECOMMENDATIONS ABOUT THE
REPORT.
THAT'S KIND OF WHAT WE'RE
LOOKING FOR.
SO --
>>I VOTED THE OPPOSITE.
I DIDN'T UNDERSTAND.
>>I'M SORRY.
MAYBE -- MAYBE WE'D BETTER DO
THAT AGAIN.
>>YEP.
>>CAN YOU PUT UP THE POLL?
MAYBE IT WASN'T CLEAR.
>>I'VE CLEARED THE RESULTS.
>>I'M SORRY.
THE FIRST OPTION, MAKE
RECOMMENDATIONS AS SUGGESTED IS
ESSENTIALLY ACCEPTING THE WHITE
PAPER AS WHOLE CLOTH.
THE SECOND OPTION IS THAT YOU
LIKE THE WHITE PAPER BUT YOU
HAVE SIGNIFICANT MODIFICATIONS
THAT YOU WANT PUT IN THERE.
THE THIRD ONE IS YOU'RE NOT
WILLING TO SUPPORT THE WHITE
PAPER, YOU'RE NOT WILLING TO
MAKE ANY RECOMMENDATIONS ON
INFRASTRUCTURE AT THIS TIME.
IS THAT CLEAR?
SO COULD WE HAVE THE VOTES
AGAIN?
I'M SORRY ABOUT THAT.
>>NO HANGING CHADS NOW.
>>IT LOOKS LIKE VOTES HAVE
SLOWED.
>>HOW MANY TOTAL SO FAR?
>>WE HAVE 11.
YOU WANT TO GIVE IT ANOTHER
MINUTE OR SHALL I END THE POLL?
>>ALL RIGHT.
YEAH, YOU GUYS -- WE CAN'T TAKE
A BREAK UNTIL I GET MORE VOTES.
COME ON, FOLKS.
>>11 IS SUFFICIENT.
>>OKAY, SO WHAT ARE THE TOTALS
NOW?
>>100%.
>>IS THAT CALLED ARM TWISTING
OR WHAT?
ALL RIGHT.
SO I'M GOING TO TURN IT OVER TO
ERIC SO WE CAN TAKE OUR BREAK,
AND THEN WE HAVE TWO VERY
INTERESTING TALKS TO BRING US ON
HOME.
WE'RE GOING TO HAVE JEN FRENCH
TALK TO US ABOUT INCORPORATING
THE LIVED EXPERIENCE.
SHE BRINGS SOME VERY INTERESTING
PERSPECTIVES.
AND THEN OUR OWN ABIODUN IS
GOING TO TALK ABOUT HIS OWN
RESEARCH BECAUSE A LOT OF YOU
HAVE INTERESTING SIDE HOBBIES
YOU DO.
BEFORE HE ROTATES OFF, WE WANTED
TO GIVE HIM A CHANCE TO TOWK TAK
ABOUT WHAT HE DOES SOME
INTERESTING WORK ON USING
VIRTUAL REALITY AND COGNITIVE
REHABILITATION.
SO ERIC, YOU WANT TO LEAD US
INTO A BREAK AND THEN WE'LL
RECONVENE.
>>SURE.
IT'S A LONG DAY TODAY, BUT I
THINK YOU'RE REALLY GOING TO
ENJOY THE NEXT TWO
PRESENTATIONS, SO PLEASE JOIN US
BACK AT 3:30 EASTERN TIME,
WHATEVER THAT IS IN YOUR LOCAL
TIME ZONE.
SEE YOU SHORTLY.
I CAN THINK OF NOBODY MORE
APPROPRIATE THAN HAVING JEN
FRENCH AND WE WERE ABLE TO SWEET
TALK HER INTO GIVING A LITTLE
INTRODUCTION TO THIS TOPIC, AND
WE'RE WELCOMING HER TODAY.
JEN IS THE FOUNDER AND EXECUTIVE
DIRECTOR OF NEUROTECH NETWORK,
AND SHE HAS A BREADTH OF
EXPERIENCE IN THE
NEUROTECHNOLOGY INDUSTRY.
SHE'S AN ASSOCIATE PUBLISHER,
SENIOR EDITOR OF NEUROTECH
REPORTS.
SHE'S ALSO AN ADVOCATE FOR
INCLUSION OF THE LIVED
EXPERIENCE.
AND MOST IMPORTANTLY, SHE'S --
I'M SORRY LIVED EXPERIENCE OF
STAKEHOLDER ENGAGEMENT AND MOST
IMPORTANTLY, SHE'S ALSO A
PARTICIPANT.
WE REALLY APPRECIATE HER, SHE'S
HAS LONG EXPERIENCE WORKING WITH
THE NIH AND DOD IN RESEARCH.
I WANT TO TURN THIS OVER TO JEN
TO GET THE DISCUSSION GOING.
THANK YOU VERY MUCH, JEN.
>>THANKS FOR THAT INTRODUCTION,
RALPH, AND THANK YOU ALL FOR
INVITING ME FOR THIS OPPORTUNITY
TODAY.
I TRULY AM HONORED TO BE HERE.
MY NAME IS JEN FRENCH.
I'M A FAIR-SKINNED WOMAN WITH
BROWN CURLY HAIR AND BLUE EYES.
I'M WEARING A TURQUOISE SWEATER
TODAY WITH A SCARF THAT HAS
MULTI-SHADES OF BROWN AND SOME
WHITE.
BEHIND ME IS A WALL OF THE WORLD
MAP, BUT WHAT IS VISIBLE ON THE
SCREEN IS THE CONTINENTS OF
AFRICA, MIDDLE EAST AND AREAS OF
MIDDLE EAST AND ASIA, AS WELL AS
THE INDIAN OCEAN.
WHAT'S NOT BEING VISIBLE ON THE
SCREEN IS THAT I AM A PERSON
LIVING WITH TETRAPL APLEGIA.
I AM HONORABLY PRESENTING TO YOU
THE NATIVE LANDS, THE SEMINOLE
INDIAN NATIVE LANDS, SO THANK
YOU FOR THIS OPPORTUNITY TO
PRESENT TO YOU TODAY.
AS RALPH HAD MENTIONED, WE'RE
GOING TO BE TALKING A LITTLE BIT
ABOUT STAKEHOLDER ENGAGEMENT AND
PART OF THAT LIVED EXPERIENCE.
I REALLY WELCOME QUESTIONS, I'D
LOVE TO HEAR SOME FEEDBACK FROM
YOU ALL AND FROM THE BOARD AS WE
GO THROUGH THIS.
SO A LITTLE BIT OF AN AGENDA
TODAY.
WE'RE GOING TO TOUCH ON SIX
POINTS.
ONE IS THE STATE OF REHAB TODAY
WITH SPINAL CORD INJURY.
REALLY WHERE THE RESEARCH CAN
HAVE AN IMPACT.
ON REHABILITATION
TODAY.
REALLY LOOKING AT PEER SUPPORT
IN THE VALUE CHAIN, DO A QUICK
INTRODUCTION TO THE NORTH
AMERICAN SPINAL CORD INJURY
CONSORTIUM, AND OUR INVOLVEMENT
IN COMMUNITY ENGAGEMENT, AS WELL
AS THE THEME OF SPEAKING A
COMMON LANGUAGE, AND THEN WE'LL
WRAP THIS UP WITH BUILDING SOME
COLLABORATIVE FRAMEWORKS AND
COMMUNITY ENGAGEMENT MOVEMENT.
SO AS I MENTIONED, I LIVE WITH
TETRAPLEGIA, I HAD A TRAGIC
ACCIDENT AT THE AGE OF 26 AND
DEVELOPED A SPINAL CORD INJURY
WITH LEFT ME WITH TETRAPLEGIA
THE REST OF MY LIFE.
MY CAREER WAS REALLY IN FINANCE
AND TECHNOLOGY.
I KNEW NOTHING, I HAD VERY
LITTLE INTERACTION WITH THE
HEALTHCARE WORLD BEFORE I WAS
INJURED, SO HERE I AM WITH A
NECK BRACE ON, SITTING AT
FLETCHER ALLEN MEDICAL CENTER IN
BURLINGTON, VERMONT AND THE
PHYSICIANS COME IN AND SAY WE'RE
GOING TO SEND YOU TO REHAB.
I DIDN'T HAVE A LOT OF EXPOSURE
TO REHAB, SO OF COURSE MY FIRST
THOUGHTS WERE, WELL, I DON'T
HAVE A DRUG OR ALCOHOL PROGRAM,
WHY ARE YOU GOING TO SEND ME TO
REHAB?
THEY TELL ME NO, IT'S NOT THAT
TYPE OF REHAB.
THEN I THOUGHT WAIT A MINUTE,
ARE YOU GOING TO SEND ME TO
MENTAL HEALTH COUNSELING?
I MEAN, I KNOW I JUST WENT
THROUGH A TRAGIC EXPERIENCE AND
I'M GOING TO NEED COUNSELING
THROUGH THIS, BUT I DON'T THINK
I NEED TO GO INTO A FULL MENTAL
HEALTH REHAB.
IS THAT WHAT I'M GOING INTO?
THEN I THOUGHT, OH, JEEZ, WELL,
WAIT A MINUTE, DOES THAT MEAN
THAT I'M GOING TO BE GOING INTO
A CORRECTIONAL REHAB?
I MEAN, DID I DO SOMETHING
WRONG?
AM I IN TROUBLE?
SO THE REASON I SAY THIS STORY
IS THAT, YOU KNOW, WHEN WE THINK
ABOUT MEDICAL REHAB AND WE JUST
TALK ABOUT IT IN REHAB, ARE WE
REALLY SPEAKING THE SAME
LANGUAGES FROM THOSE WHO ARE NOT
EXPOSED TO THE HEALTHCARE
SYSTEM.
A LOT OF TIMES PEOPLE THAT HAVE
TRAUMATIC INJURIES OR TRAUMATIC
EXPERIENCE THAT GET THROWN INTO
THE MEDICAL HEALTHCARE SYSTEM
DON'T REALLY UNDERSTAND THE
LANGUAGE, SO WE HAVE TO THINK
ABOUT THAT AS DEVELOPERS AND AS
RESEARCHERS ON INTEGRATING WITH
THOSE IN THE COMMUNITY WITH
LIVED EXPERIENCE.
SO REALLY IT WASN'T UNTIL I WENT
TO PHYSICAL REHAB THAT I REALLY
UNDERSTOOD THE VALUE OF IT IN
TERMS OF BEING ABLE TO LEARN
ADLs AND LEARN HOW TO BECOME
MOBILE, AND REALLY UNDERSTAND
WHAT TYPE OF REHAB TECHNOLOGY
WAS AVAILABLE, AND IN FACT AT
THE TIME, WHEN I WAS INJURED, IT
WAS BACK IN 1998, FES CYCLING
WAS ONLY AVAILABLE IN REHAB
HOSPITALS.
SO THAT WAS REALLY MY EARLY
EXPOSURE TO UNDERSTANDING THE
VALUE AND THE SKILLS THAT I
NEEDED TO LEARN TO GET MY LIFE
BACK IN ORDER.
BUT THROUGH THAT EXPERIENCE, I
ALSO FOUND A RESEARCH GROUP UP
IN CLEVELAND WORKING WITH THE
V.A. CASE WESTERN RESERVE AND
THE METRO HEALTH SYSTEM.
AND I WAS ONE OF THE -- AT THE
TIME I WAS THE SIXTH PERSON TO
BE IMPLANTED WITH A LOWER
EXTREMITY NEUROPROSTHESIS, SO
HERE YOU SEE SOME IMAGES OF THE
ELECTRODES THAT I HAVE
IMPLANTED.
THERE'S SOME THAT ARE IMPLANTED
INTO THE NERVES, WHICH IS THIS
LITTLE CUFF ELECTRODE THAT LOOKS
LIKE A CUFF, THE FISH-TYPE IS AN
INTRAMUSCULAR AND FINALLY THE
DISK IS AN EPIMESIAL.
ALL OF THEM CONNECT TO A
PACEMAKER THAT'S IMPLANTED IN MY
ABDOMEN, AND ALL THAT IS
ENCAPSULATED INSIDE THE BODY.
I STILL USE THE SYSTEM TODAY
WITH AN EXTERNAL CONTROL UNIT
THAT FEEDS INFORMATION TO THE
IMPLANT AS WELL AS POWER FOR
FUNCTIONAL USE SUCH AS STANDING
BUT ALSO EXERCISE AND TRUNK
CONTROL AND VARIOUS OTHER
ASPECTS.
BUT IT WAS REALLY THROUGH THIS
EXPERIENCE THAT I STARTED TO GET
THE LIGHT OF UNDERSTANDING HOW
PEOPLE WITH LIVED EXPERIENCE CAN
HELP SHAPE HOW RESEARCH GOES
FORWARD AND REALLY HELP TO
PARTNER WITH DEVELOPERS TO
REALLY THINK ABOUT HOW PEOPLE
WOULD USE THIS AND LOOKING AT
THE NEXT GENERATIONS GOING
FORWARD.
AND REALLY FOR ME, WHEN I WAS
EARLY IN REHAB, I WAS ALL ABOUT
GETTING BACK TO NORMAL FOR ME.
SO MY PERSONAL EXPERIENCE,
OUTDOOR RECREATION WAS EXTREMELY
IMPORTANT, AND EARLY IN MY
REHAB, I HAD A RECREATION
THERAPIST COME IN AND INTRODUCE
ME TO SOME OF THE SPORTS AND I
THOUGHT, WHAT IN THE WORLD ARE
YOU TELLING ME ABOUT, I CAN
BARELY DRESS MYSELF.
BUT ACTUALLY THAT EARLY
INTERACTION LED TO GETTING MY
LIFE BACK TO NORMAL, AND I
DIDN'T REALIZE IT AT THE TIME,
BUT IT ALSO LED INTO A AN AREA F
PEER SUPPORT THAT HELPED TO
REALLY LEARN ABOUT A LOT OF THE
RESOURCES THAT ARE AVAILABLE
TODAY.
BUT I WANT TO DO A QUICK REALITY
CHECK OF WHERE WE ARE TODAY
COMPARED TO WHEN I DID REHAB 24
YEARS AGO.
SO TODAY, PNEUMONIA AND
SEPTICEMIA ARE STILL THE LEADING
CAUSES OF DEATH AMONG PEOPLE
WITH SPINAL CORD INJURY AND THAT
HASN'T CHANGED IN 40 YEARS.
BUT WHAT HAS CHANGED AND WHAT WE
HAVE SEEN CHANGE IS THAT MEDICAL
REHABILITATION HAS GOTTEN
SIGNIFICANTLY SHORTER TODAY THAN
IT WAS WHEN I WAS INJURED.
SO A STUDY THAT WAS DONE BACK IN
20 -- LOOKING AT REHAB IN 2006,
THE AVERAGE REHAB FOR SPINAL
CORD INJURY WAS 70 DAYS.
TODAY IN THE MODEL CARE SYSTEM,
IT'S 30 DAYS.
CUT IN MORE THAN HALF, AND
OUTSIDE OF THE MODEL CARE
SYSTEM, IT'S AN AVERAGE OF 16
DAYS.
SO THAT DOESN'T GIVE PEOPLE
ENOUGH TIME TO LEARN ACTIVITIES
OF DAILY LIVING, AND ALSO THE
IMPORTANCE OF THOSE AND HOW THEY
IMPACT QUALITY OF LIFE, BUT ALSO
HOW PEOPLE CAN LIVE
INDEPENDENTLY.
ALSO WHAT'S LOST IN THIS
SHORTENED REHAB IS HOW DO PEOPLE
MITIGATE SECONDARY CONDITIONS
AND SECONDARY COMPLICATIONS, AND
REALLY WE'RE LOOKING AT A CRISIS
NOW IN OUR REHAB CENTERS, WHERE
PEOPLE THAT HAVE VERY
PREVENTABLE SECONDARY CONDITIONS
ARE GETTING REHOSPITALIZED AND
BUILDING UP THE COST WITHIN OUR
HEALTHCARE SYSTEM.
SO THIS IS WHERE WE ARE TODAY.
AND I WANT TO GIVE YOU A COUPLE
OF REAL WORLD EXAMPLES OF WHAT
WE'VE SEEN.
AND THESE ARE COURTESY OF UNITED
SPINAL ASSOCIATION.
SO THE FIRST ONE I WANT TO RELAY
TO YOU IS A WOMAN NAMED JANE WHO
WAS ELIGIBLE FOR
NEUROREHABILITATION, BUT SHE
DEVELOPED A PRESSURE SORE WHILE
SHE WAS AN INPATIENT.
AND DUE TO THAT PRESSURE SORE,
SHE WAS NEVER ELIGIBLE FOR ACUTE
REHAB AND ENTERED INTO A SKILLED
NURSING FACILITY.
AND THERE WAS NEVER ANY
FOLLOW-UP, AND SHE LOST HER
ELIGIBILITY, AND IN FACT, SHE
NEVER RECEIVED EITHER
REHABILITATION OR EDUCATION ON
LIVING WITH A SPINAL CORD INJURY
OR CHRONIC SPINAL CORD INJURY.
THE OTHER CASE I'D LIKE TO BRING
TO YOU IS A GENTLEMAN NAMED
JIMMY, INJURED THROUGH A GUNSHOT
WOUND, A T12 INJURY BUT HE HAD
NO SUPPORT SYSTEM AND EVENTUALLY
DEVELOPED SEVERE DEPRESSION.
HE HAD THREE WEEKS OF REHAB BUT
THEN BECAUSE HE'D HAD NO
EXTERNAL SUPPORT SYSTEM, HE WAS
TRANSFERRED TO A SKILLED NURSING
FACILITY, AND HE NEVER RECEIVED
OUTPATIENT REHAB.
HOWEVER, THE SKILLED NURSING
FACILITY WAS BILLING HIS
INSURANCE FOR SUBACUTE REHAB BUT
HE NEVER RECEIVED THAT THERAPY.
AND EVEN WHEN HE TRIED IN
EFFORTS TO GET DISCHARGED, HE
COULDN'T GET DISCHARGED FROM
THAT HOSPITAL TO TRY TO GET INTO
INDEPENDENT LIVING.
THE THIRD CASE I'D LIKE TO BRING
TO YOU OF REAL WORLD EXPERIENCE
IS A GENTLEMAN NAMED CHRIS, WHO
HAD A VERY HIGH LEVEL SPINAL
CORD INJURY AND HE WAS
VENTILATOR-DEPENDENT AND HE
LIVED IN A VERY RURAL STATE, AND
HE WAS ON MEDICARE -- OR EXCUSE
ME -- MEDICAID AND HAD NO ACCESS
TO AN SCI SPECIALTY CENTER AND
HE LIVED IN THE ICU FOR OVER A
YEAR WHILE HIS MOTHER WAS TRYING
TO GET HIM ADMITTED INTO A
SPECIALTY CARE CENTER BUT NO ONE
WOULD TAKE HIM.
IN FACT THE HOSPITAL HE WAS IN
IN ICU WAS TRYING TO ENCOURAGE
HIS MOTHER TO JUST LET HIM DIE.
SO EFFICIENTLY WHEN HIS MOTHER'S
PERSISTENCE AND HEAVEN WITH SOME
ADVOCACY GROUPS HE WAS ABLE TO
GET INTO AN SCI INJURY CENTER
BUT IT WAS OVER A THOUSAND MILES
AWAY SO HE DIDN'T HAVE THE
PERSONAL SUPPORT SYSTEM AROUND
HIM.
HE WAS ABLE TO GET OFF THE
VENTILATOR DURING THE DAY AND
FINALLY WHEN HE WENT HOME, HE
DIED SHORTLY THEREAFTER.
SO THESE ARE JUST A COUPLE OF
EXAMPLES, BUT I THIS IS SOMETHIG
THAT WE SEE THAT IS WIDESPREAD
WITHIN SPINAL CORD INJURY AND
I'M SURE IT EXISTS WITHIN OTHER
TRAUMATIC CONDITIONS AS WELL.
BUT THE NAMES HAVE BEEN CHANGED,
THESE ARE REAL CASES BUT THE
NAMES HAVE BEEN CHANGED TO
PROTECT PEOPLE'S PRIVACY AND I
DO WANT TO THANK UNITED SPINAL
ASSOCIATION FOR PROVIDING THESE
EXAMPLES.
BUT THESE ARE CASES THAT THEIR
RESOURCE CENTER AS WELL AS THE
RESOURCE CENTER AT THE -- CENTER
ARE TRYING TO GET AROUND -- THAT
PEOPLE ARE RECEIVING AROUND THE
WORLD TODAY.
SO WHERE ARE WE?
WHEN YOU'RE OUTSIDE OF RESEARCH
AND OUTSIDE OF A SPECIALTY CARE
CENTER, WE REALLY NEED TO THINK
ABOUT HOW WE ADDRESS THINGS IN
THE REAL WORLD.
SO WE'RE SEEING CLINICAL TRIALS
THAT HAVE MORE THERAPY SESSIONS
THAN ANY INSURANCE COMPANY, EVEN
MEDICARE AND MEDICAID WOULD
REALISTICALLY COVER OR THAT
PEOPLE COULD REALISTICALLY
RECEIVE.
WE'RE DEVELOPING TECHNOLOGIES
THAT ARE VERY INNOVATIVE, WHICH
I'LL TELL YOU IS EXTREMELY
EXCITING, BUT ARE WE DEVELOPING
THEM TO MAKE THEM OUT OF REACH
OF SO MANY PEOPLE WITH SPINAL
CORD INJURIES?
OR OTHER TRAUMATIC INJURIES?
AND THEN OF COURSE WE HAVE THE
SCI MODEL SYSTEMS, WHICH ARE
FANTASTIC BUT THEY'RE CLOSED
ECOSYSTEMS.
AND WE NEED TO UNDERSTAND THE
REHABILITATION OUTCOMES THAT
HAPPEN OUTSIDE OF THOSE
SPECIALTY CENTERS, WHICH ARE THE
BULK OF THE PEOPLE THAT ARE
RECEIVING REHABILITATION MEDICAL
REHABILITATION REHAB.
SO WHAT ARE SOME THINGS THAT WE
COULD DO?
HERE'S JUST A FEW IDEAS THAT
INTRN TOHAVE BEEN TOSSED AROUNDR
CONSORTIUM.
ONE IS TO THINK ABOUT HOW
RESEARCH OF CLINICAL OUTCOMES
FOR THOSE THAT ARE IN THE
SPECIALTY CARE CENTERS COMPARE
TO THOSE WHO ARE NOT.
OR WHAT ABOUT ECONOMIC BURDEN
STUDIES OF THOSE WHO RECEIVED
COMPREHENSIVE CARE WHICH OUR
MODEL CENTERS ARE VERY GOOD AT
COMPARED TO THOSE IN AING FROM
MEANTED SYSTEM WHICH REALLY
HAPPENS IN THE WIDESPREAD
HEALTHCARE SYSTEM IN THE U.S.
BUT ALSO LOOKING AT WHAT ABOUT A
NATIONAL STUDY OF REHABILITATION
OUTCOMES AND THE SOCIAL
IMPLICATIONS THAT HAPPEN DUE TO
PEOPLE THAT HAVE SHORTENED REHAB
OR DON'T RECEIVE PROPER
EDUCATION.
HERE'S A COUPLE STUDIES THAT
HAVE BEEN DONE, ONE I LOVE
LOOKING AT REHOSPITALIZATIONS
WITHIN THE FIRST FIVE YEARS OF
THEIR SPINAL CORD INJURY.
THEY LOOKED TH AT OVER 1800 RECS
OF INDIVIDUALS AND THEY FOUND
THAT 70% OF THOSE RECORDS -- OF
THOSE PEOPLE, INDIVIDUALS, WERE
REHOSPITALIZED WITHIN THE FIRST
FIVE YEARS OF THEIR INJURY
RELATING TO COSTS AS $2,019 OF
OVER $215,000 PER CASE.
THINK ABOUT HOW THAT ADDS COSTS
TO OUR HEALTHCARE SYSTEM, WHERE
IF WE JUST EXTENDED REHAB, WE
MIGHT BE ABLE TO GET TO A BETTER
SPACE AND LESS
REHOSPITALIZATIONS.
HERE ARE SOME OTHER STUDIES
ABOUT PREVENTIVE SERVICES,
LOOKING AT STROKE REHAB AND THE
DIFFERENCE BETWEEN INPATIENT
REHAB AND SKILLED NURSING
FACILITIES, AND ALSO HOW DO WE
DEMONSTRATE THE VALUE OF REHAB
SERVICES THAT EXIST TODAY.
THESE ARE ONLY A FEW EXAMPLES
BUT I WILL SAY THINKING OF IT
FROM A FUNDING AGENCY
STANDPOINT, YOU HAVE AN
INFLUENCE ON HOW THESE STUDIES
ARE MADE AND WHAT STUDY
DIRECTION THEY CAN GO, AND THINK
ABOUT WHAT INFEU INFLUENCE YOU D
HAVE ON RESEARCH WE DO TODAY TO
BE ABLE TO PARTNER WITH THE
LIVED EXPERIENCE SITUATIONS SO
THEY CAN DO THEIR ADVOCACY WORK
TO HELP CHANGE THE SYSTEM AND
ALSO TO HELP ADOPT WHAT WE LEARN
IN MEDICAL REHABILITATION
RESEARCH INTO THE CLINIC.
SO FOR ME TAKING IT BACK FROM A
PERSONAL EXPERIENCE,IN, GOING
THROUGH A TRAUMATIC INJURY IS
LIFE CHANGING, NO DOUBT ABOUT
THAT.
BUT TRANSITION IS POSSIBLE.
HERE'S A PICTURE OF ME RIGHT
BEFORE MY INJURY, SNOWBOARDING,
AND HERE'S ONE THE NEXT SKI
SEASON, I WAS BACK ON THE
SLOPES.
SO THE TRANSITION IS POSSIBLE,
AND A LOT OF TIMES WHEN WE SEE
PEOPLE WITH DISABILITIES OUT IN
THE COMMUNITY, WE THINK, OH,
THEY'VE ADJUSTED AND EVERYTHING
WAS FINE, BUT I WILL TELL YOU
THAT TRANSITIONS ARE NOT EASY.
SO WE HAVE TO BE VERY CONSCIOUS
OF WHAT WE DO IN THOSE TYPES OF
TRANSITIONS.
ONE AREA THAT I LEANED ON WAS
LEARNING HOW TO LIVE
INDEPENDENTLY.
NOW WHEN I WAS INJURED, I WAS
LIVING IN A SMALL STATE OF
NEW HAMPSHIRE, AND I LIVED IN AN
OLD COLONIAL HOPE WITH MANY,
MANY STEPS GOING INTO IT.
SO WHEN I WAS SENT HOME AFTER
REHAB, I WAS REALLY A PRISONER
IN MY OWN HOME.
I HAD NO WAY OF GETTING IN AND
OUT.
AND IT WAS ACTUALLY THE
INDEPENDENT LIVING CENTER THAT
EVENTUALLY PROVIDED A CHAIR
CLIMBER SO THAT THE PERSONS
PROVIDING TRANSPORTATION, I
COULD GET TO REHAB, BUT LATER
PROVIDED A LIFT.
SO I COULD GET IN AND OUT OF MY
HOME INDEPENDENTLY.
I ALSO NEEDED MEDICAL EQUIPMENT
THAT IS NOT COVERED BY
INSURANCE, AND SO I LEANED ON
THE INDEPENDENT LIVING CENTER
AND THEY PROVIDED WORKING WITH
LOCAL BANKS TO PROVIDE LOW AND
NO INCOME INTEREST LOANS FOR
MEDICAL EQUIPMENT.
BUT THEY ALSO HELPED TO TEACH ME
SOME OF THESE BASIC ADLs.
I WAS IN REHAB FOR THREE MONTHS
BUT THERE ARE CERTAIN THINGS YOU
DON'T LEARN IN REHAB.
PARTICULARLY FOR ME ONE LIFE
CHANGING EXPERIENCE WAS I
LEARNED HOW TO USE A PUBLIC
RESTROOM AND HOW I LEARNED TO DO
THAT WAS THROUGH MY PEER MENTOR.
MY PEER MENTOR TAUGHT ME A LOT
ABOUT HOW TO LIVE INDEPENDENTLY
AND HOW TO GO ABOUT THOSE SKILLS
TO LEARN AND BEING OPEN TO
LEARNING OUT IN THE ENVIRONMENT.
SO I WANT TO TOUCH ON A LITTLE
BIT ABOUT PEER SUPPORT.
THE NORTH AMERICAN SPINAL CORD
INJURY CONSORTIUM, WE'VE BEEN
HOSTING ROUNDTABLES WITH
NON-PROFIT ORGANIZATIONS THAT
DIRECTLY REPRESENT PEOPLE WITH
SPINAL CORD INJURY.
AND ONE THING THAT CAME THROUGH
A LOT OF THOSE ROUNDTABLES THAT
WE'VE BEEN RUNNING FOR THE LAST
SIX MONTHS IS THAT PEER SUPPORT
IS INCREDIBLY VALUABLE.
AND THIS IS JUST ONE STUDY
PUBLISHED THAT LOOKS AT REALLY
LOOKING AT PEER SUPPORT AS AN
INTERVENTION.
IN FACT, SOME COUNTRIES DO THIS,
BUT IT'S A FRAMEWORK THAT MAYBE
WE CAN ADOPT HERE IN THE U.S.
LOOKING AT A GREATER
CONCEPTUALIZATION OF WHAT PEER
SUPPORT INTERVENTIONS ARE, AND
WRAPPING AROUND IT WITH
DEVELOPMENT AND IMPLEMENTATION
AND HOW TO EVALUATE IT, AND THIS
PAPER ACTUALLY GOES INTO AN
EVIDENCE FRAMEWORK WHICH
SPECIFICALLY INCLUDES HEALTH
NAVIGATION COACHING BECAUSE OUR
HEALTHCARE SYSTEM IS SO COMPLEX,
IF YOU ARE NOT INTEGRATED INTO
THE HEALTHCARE SYSTEM OR REALLY
KNOW ANYTHING ABOUT IT, IT'S
VERY DIFFICULT TO NAVIGATE.
SO A LITTLE INTRODUCTION TO THE
NORTH AMERICAN SPINAL CORD
INJURY CONSORTIUM.
WE ARE A NON-PROFIT ORGANIZATION
REPRESENTING THOSE WITH LIVED
EXPERIENCE OF SPINAL CORD INJURY
AROUND NORTH AMERICA.
OUR MISSION IS TO BRING ABOUT
UNIFIED ACHIEVEMENT IN RESEARCH,
CARE AND POLICY IN COLLABORATIVE
EFFORTS ACROSS THE SPINAL CORD
INJURY COMMUNITY.
AND IN FACT, WE ACHIEVE OUR
MISSION BY IDENTIFYING GAPS,
COMMUNICATING RESOURCES
THROUGHOUT OUR COMMUNITY AS WELL
AS BEING A CONDUIT OF
COLLABORATION BETWEEN PEOPLE
WITH LIVED EXPERIENCE AND THE
MANY STAKEHOLDERS THAT ARE
INVOLVED.
AND THAT IS WHY WE HAVE THREE
DIFFERENT CATEGORIES OF
MEMBERSHIP, SO PATRON MEMBERS
ARE THOSE WHO HAVE LIVED
EXPERIENCE, DIRECT LIVED
EXPERIENCE.
IT COULD BE THOSE LIVING WITH A
CONDITION AND/OR THEIR FAMILY
MEMBERS.
PRINCIPAL MEMBERS ARE
NON-PROFITS OR REGISTERED
CHARITIES WHO DIRECTLY REPRESENT
PEOPLE WITH SPINAL CORD INJURY
AND OUR PARTNER MEMBERS ARE ALL
OF THOSE STAKEHOLDERS WHO ARE
REALLY INTERESTED AND HAVE --
WANTING TO HAVE A DEEPER
UNDERSTANDING OF THE LIVED
EXPERIENCE.
REALLY, WE WERE FORMED OUT OF A
GRASSROOTS EFFORT FROM A MEETING
IN 2016, AND WE REALLY BUILT THE
COMMUNITY AROUND -- WITHIN A
YEAR OF 2017 AND WE LAUNCHED IN
2018.
AND I'LL GO INTO A LITTLE ABOUT
HOW WE'VE CRAFTED COMMUNITY
ENGAGEMENT AND DIFFERENT WAYS TO
BECOME INVOLVED NOT ONLY IN
RESEARCH BUT ALSO IN PRODUCT
DEVELOPMENT AND SERVICES
DEVELOPMENT.
SO REALLY THIS IS ONE EXAMPLE,
SCI2020, A DECADE OF DISRUPTION
WAS A MEETING HOSTED BY THE NIH
IN FEBRUARY OF 2019.
AND THEY CALLED ON US AND ASKED
US TO HAVE A PANEL HOSTED OF
LIVED EXPERIENCE.
SO THERE WERE EIGHT OF US ON
THAT PANEL, AND WE WERE
INTERACTING WITH GI LYN JAKEMAN
FROM NIH WHO SPEARHEADED THIS
EFFORT AND WE FELT LIKE EIGHT OF
US COULDN'T REPRESENT OUR
COMMUNITY.
SO WE DEVELOPED A COMMUNITY
SURVEY AND WITHIN 37 DAYS OF
PUTTING THAT OUT, WE HAD OVER
1800 RESPONSES FROM PEOPLE WITH
LIVED EXPERIENCE.
AND THIS IS WHAT WE FOUND.
WE FOUND THAT PEOPLE LIVING WITH
SPINAL CORD INJURIES AND THEIR
FAMILIES, THEY WANT TO BE
INVOLVED IN SETTING THE RESEARCH
PRIORITIES BUT THEY ALSO WANT TO
BE INVOLVED IN DESIGNING
PROJECTS.
BUT WHAT THEY ALSO FELT, THEY
FELT LEFT OUT OF THE RESEARCH
PROCESS UNTIL THEY WERE ACTUALLY
RECRUITING FOR CLINICAL TRIALS.
AND WE NEED TO CHANGE THAT.
THAT WAS A LITTLE EYE OPENING
FOR US.
AND OF COURSE THIS IS PUBLISHED
ON OUR WEBSITE AS A WHITE PAPER
AND YOU'RE WELCOME TO LOOK AT
THE OTHER RESULTS FROM THIS
SURVEY.
SO THAT SPARCED US IN THE
CONSORTIUM TO REALLY TAKE ON
COMMUNITY ENGAGEMENT PROJECTS,
SO WE DO EVERYTHING FROM HELPING
WITH SURVEYS OR COMMUNITY
SURVEYS TO GAIN KNOWLEDGE ABOUT
OUR COMMUNITY TO WORKING ON
POLICY CHANGESLIKE INCLUSION IN
THE CDC REGISTRY, AS WELL AS
DEVELOPMENT -- AS WELL AS BOTH
PRE-CLINICAL WORK LIKE THIS
VAGUS NERVE STIMULATION PROJECT
AS WELL AS GUIDELINES FOR
ACTIVITY-BASED THERAPY, THAT'S
ANOTHER RESEARCH THAT'S GOING
ON.
THESE ARE NOT ALL OF OUR
PROJECTS, THEY'RE LISTED ON OUR
WEB SIT, BUWEBSITE, BUT IT GIVEA
FLAVOR.
OVER THE YEARS OF RUNNING THESE
PROJECTS, WE FOUND SOMETHING
INTERESTING.
WE FOUND THAT ARE WE REALLY
SPEAKING THE SAME LANGUAGE?
RESEARCHERS ARE THOSE WHO ARE IN
THE RESEARCH REALM, ARE WE
SPEAKING THE SAME LANGUAGE AS
THOSE WITH LIVED EXPERIENCE THAT
DON'T HAVE THE RESEARCH
EXPERIENCE AND UNDERSTANDING?
BUT THEY DO HAVE A DISTINCT
KNOWLEDGE OF LIVED EXPERIENCE IN
THE COMMUNITY.
THAT SPARCED US TO DEVELOP THE
SCI RESEARCH ADVOCACY COURSE, IT
WILL BE RELEASED IN JANUARY AND
IT LOOKS AT REALLY TRAINING
INDIVIDUALS ON HOW TO
PARTICIPATE IN WHAT THE RESEARCH
PROCESS IS, PARTICULARLY THOSE
THAT DON'T HAVE THAT BASE
KNOWLEDGE.
WE'RE NOT TRYING TO TURN THEM
INTO SCIENTISTS BUT WE'RE TRYING
TO GIVE THEM THE BASE KNOWLEDGE
SO THAT THEY CAN BE GOOD
ADVISORS FOR VARIOUS TYPES OF
RESEARCH AND DEVELOPMENT
PROJECTS.
ALSO IT'S AN ONLINE TRAINING
COURSE TO MAKE IT EASY FOR OUR
COMMUNITY TO BE INVOLVED AND TO
TAKE IT AT THEIR OWN PACE.
WE ALSO ARE LOOKING AT EDUCATING
AND ORGANIZING RESEARCHERS AND
THOSE IN THE HEALTHCARE
PROVIDERS, BUT THEN ALSO
FACILITATING MATCH MAKING.
SO OUR OBJECTIVES ARE AGAIN TO
BUILD AN ONLINE RESEARCH
ADVOCACY COURSE, TO DO SOME
MATCH MAKING AS WELL AS BUILDING
AWARENESS OF CLINICAL TRIAL
RECRUITMENT AND FINALLY TO
EVENTUALLY GET TO A LIVE
INSTRUCTOR-LED PROGRAM WHICH WE
WILL EVENTUALLY GET TO.
THESE ARE THE MODULES.
WE HAVE 12 MODULES WITHIN OUR
COURSE.
WE EVEN HAVE A MODULE FOR SCI101
FOR RESEARCHERS TO REALLY
UNDERSTAND WHAT THE LIVED
EXPERIENCE IS AND AS THEY GO
THROUGH THIS COURSE, THERE'S A
DEEP DIVE INTO EACH TOPIC.
WE ALSO HAVE QUIZZES AFTERWARDS,
BEFORE YOU CAN ADVANCE TO THE
NEXT MODULE.
THEN AT THE END, WE HELP WITH
MATCH MAKING TO THOSE TEAMS
LOOKING TO EMBED THE LIVED
EXPERIENCE INTO THEIR VARIOUS
PROJECTS.
SO WE HAVE A DIVERSE COMMUNITY
OF A WORKING GROUP THAT'S
DEVELOPING THIS COURSE, SO IT'S
NOT JUST PEOPLE WITH LIVED
EXPERIENCE AND THEIR CAREGIVERS.
IT'S SCI RESEARCHERS.
WE HAVE SOME REPRESENTATIVES
FROM FUNDING AGENCIES,
PHYSICIANS AND INDUSTRY REP
TIFERS.
WE HIRED A CONSULTANT SUSAN
SCHAEFER FROM THE ACADEMY OF
RESEARCH ADVOCACY TO HELP US
WITH THE CONTENT AS WELL AS A
MARKETING GROUP THAT'S HELPING
US WITH THE PRODUCTION OF OUR
COURSE.
SO OUR PREREGISTRATION IS OPEN.
AGAIN THE COURSE WILL OPEN AT
THE BEGINNING OF THE YEAR, AND
AGAIN, IT'S A FREE ONLINE COURSE
FOREMEMBFOR MEMBERS OF OUR COMMO
TAKE AS WELL AS THOSE THAT WANT
TO LEARN MORE ABOUT SPINAL CORD
INJURY.
SO I JUST WANT TO CLOSE OUT
TODAY TO TALK A LITTLE BIT ABOUT
A COLLABORATIVE FRAMEWORK OF HOW
WE CAN LOOK AT DOING
REHABILITATION RESEARCH AND
PARTNERING WITH THE COMMUNITY.
THIS IS A NEAT PAPER ABOUT
PATIENT-CENTERED FRAME WORKS
PARTICULARLY FOR OUTPATIENT
SETTINGS.
THEY PUT FORWARD FIVE
PRINCIPLES, SO IDENTIFYING
SHARED VALUES, REALLY PARTNERING
WITHIN A SPECIFIC SETTING,
ENGAGING IN COEDCATION AND
COLLABORATION WITH THE
COMMUNITY, AND BUILDING THOSE
RELATIONSHIPS, AS WELL AS
DESIGNING ACCESSIBLE PROCEDURES.
AS WE LOOK AT INTEGRATING INTO
THE REHABILITATION SETTING.
THE ENGAGE THE SETTING IS A
MOVEMENT AROUND THE WORLD THAT
WE'RE SEEING DIFFERENT
CONSORTIUMS POP UP AROUND THE
WORLD.
AFTER SPINAL CORD INJURY,
THERE'S NOT JUST NORTH PLAIRK
BUT EUROPE, THERE'S AN EFFORT IN
AFRICA, AS WELL AS PARTS OF
ASIA.
SO WE KNOW THAT THE ENGAGEMENT
MOVEMENT IS GAINING MOMENTUM,
AND NOT ONLY JUST FOR SPINAL
CORD INJURY BUT FOR A LOT OF
OTHER INDICATIONS AS WELL, AND A
LOT OF WORK HAS BEEN DONE TO
UNDERSTAND WHAT THE BEST
FRAMEWORKS ARE FOR ENGAGEMENT.
IN FACT, OUR REGULATORY AGENCIES
HERE IN THE U.S. ARE VERY
ENGAGED IN UNDERSTANDING WHAT
PREFERENCES ARE WITHIN THOSE
COMMUNITIES.
SO THE DRUG EVALUATION OR CDER
AT FDA HAS VERY SPECIFIC
GUIDANCE ON PATIENT-FOCUSED DRUG
DEVELOPMENT, CDRH ARE THE
DEVICES AREA HAS A WHOLE
GUIDANCE ON PATIENT PREFERENCE
INITIATIVES AND CBER, WHICH
HANDLES THE BIOLOGICS IS KIND OF
A HYBRID BETWEEN THOSE TWO
CENTERS.
THIS IS JUST ONE EXAMPLE OF
ENGAGEMENT MODELS OR ENGAGEMENT
CONTINUUM.
THERE'S LOTS OF MODELS OUT THERE
AND I WILL SAY THIS IN WORKING
ON THESE PROJECTS, THERE IS NOT
SOMETHING COOKIE CUTTER FOR
EVERY PROJECT, AND SO WE
ENCOURAGE TO LOOK AT DIVERSITY
OF ENGAGEMENTS AND HOW THEY
MIGHT FIT INTO RESEARCH AND
REALLY HELPING TO EDUCATE THE
RESEARCH COMMUNITY OF HOW TO
EMBED ENGAGEMENT INTO THEIR
PROJECT.
SO NOT JUST GAINING INPUT FROM
COMMUNITIES BUT ALSO ADVISORY
BOARDS AND HELPING THEM MOVE
ALONG THAT RESEARCH AS WELL AS
COLLABORATIVE FRAME WORKS AND
SHARED LEADERSHIP.
SO I LOVE THIS FRAMEWORK, IT'S
DEVELOPED BY PCORI, BUT AGAIN,
THERE'S A LOT OF OTHER FRAME
WORKS THAT WE COULD LOOK TO AS
WE HELP TO EDUCATE BOTH THE
RESEARCH COMMUNITY AND THOSE
WITH LIVED EXPERIENCE.
SO IN SUMMARY, I JUST WANT TO
GIVE A QUICK SUMMARY, I KNOW I
TOUCHED ON A LOT DURING THIS
PRESENTATION, BUT REALLY LOOKING
AT THE FRAMEWORK WE HAVE TODAY
IS EXTREMELY SHORT, PEOPLE ARE
NOT LEARNING THEIR ADLs,
PREVENTABLE COMPLICATIONS ARE
CREATING A CRISIS WITHIN OUR
REHAB CENTERS.
ALSO LOOKING -- RESEARCH CAN
HAVE AN IMPACT ON HOW WE PARTNER
AND HOW WE MOVE FORWARD WITH
DIFFERENT TYPES OF DEVELOPMENT
AND IN REHAB, BOTH LOOKING AT
SPECIALTY CARE CENTERS AND THOSE
WHO DO NOT HAVE ACCESS TO THEM,
ECONOMIC BURDEN STU DNS, AS WELL
AS THE -- EDUCATION AND HOW WE
CAN IMPROVE THAT IN OUR NEW
MODELS AS WE GO FORWARD.
PEER SUPPORT I TOUCHED ON THAT
AND REALLY HOW IT FITS IN THE
VALUE CHAIN AND HOW WE SHOULD
CONSIDER THINKING ABOUT HOW WE
CAN FORMALIZE IT HERE IN THE
UNITED STATES.
I UNIT DUED YI INTRODUCED YOU TE
CONSORTIUM, WHAT WE CAN DO IN
TERMS OF THE VOICE OF THE
COMMUNITY BRINGING THEM INTO THE
RESEARCH PROCESS, ALSO THINKING
HOW WE CAN SPEAK COMMON
LANGUAGES.
NOT ONLY THOSE ON THE RESEARCH
SIDE BUT THOSE WITH LIVE
EXPERIENCE AND THOSE IN THE
CLINICAL ENVIRONMENT AND HOW WE
CAN DO SOME BETTER MATCH MAKING
TO MAKE SURE WE SPEAK COMMON
LANGUAGES SO WE CAN MOVE THE
RESEARCH FORWARD AND FINALLY
JUST TOUCHED ON BRIEFLY
COLLABORATIVE FRAMEWORKS THAT WE
CAN USE TO MOVE FORWARD IN TERMS
OF THE ENGAGEMENT MOVEMENT,
WOKIWORKING WITH REGULATORY AND
FUNDING AGENCIES AND WHAT
INFLUENCE THEY CAN HAVE OR YOU
COULD HAVE, I SHOULD SAY, AS
WELL AS SOME MODELS OF
ENGAGEMENT.
SO THAT KIND OF SUMMARIZES WHAT
I WAS TALKING ABOUT TODAY.
I WANT TO THANK OUR U. SUPPORTES
WITH THE NORTH AMERICAN SPINAL
CORD INJURY CONSORTIUM, AND THIS
IS MY CONTACT INFORMATION.
AND I WILL HAND IT BACK TO
RALPH.
THANK YOU.
OR ERIC.
>>THANKS, JEN.
THAT WAS TERRIFIC.
I APPRECIATE YOUR THOUGHTS AND
INSIGHTS.
DOES ANYONE HAVE QUESTIONS FOR
JEN?
MAYBE WHILE HANDS ARE GOING
UP -- WE'VE GOT ONE FROM --
WE'VE GOT SEVERAL.
ABIODUN.
>>JEN, THANK YOU VERY, VERY
MUCH FOR A VERY INSIGHTFUL
PRESENTATION.
I JUST HAVE TWO QUESTIONS FOR
YOU.
DURING YOUR PRESENTATION, YOU
DID MENTION THE REDUCTION IN THE
TIME FOR REHOSPITALIZATION FOR
ALMOST 50% THEREABOUT NOW.
WHAT DO YOU THINK IS DRIVING
THAT?
IS IT COST OR EVIDENCE FOR
EFFECTIVENESS OF REHABILITATION
OR ARE THE INTERVENTIONS NOW
MUCH BETTER THAT WE'RE GETTING
BETTER OUTCOMES IN A SHORTER
TIME?
AND THEN THE SECOND QUESTION
THAT I HAVE FOR YOU IS, WHAT'S
THE ROLE OF -- IN DETERMINING
LENGTH OF REHABILITATION AND
RE --
>>THOSE ARE INSIGHTFUL
QUESTIONS, SO THANK YOU FOR
ASKING THEM.
THE FIRST ONE OF WHAT IS DRIVING
THAT SHORTENED AREA, I THINK I
CAN MAKE SOME ASSUMPTIONS OR
SOME EDUCATED GUESSES BUT I
THINK THERE'S NOT A LOT OF
RESEARCH TO UNDERSTAND EXACTLY
WHY.
BUT WHAT WE HAVE SEEN BOOTS ON
THE GROUNDWORKING WITH THE
RESOURCE CENTERS IS A LOT OF IT
IS INSURANCE-DRIVEN.
WE SEE THAT THE MODEL CARE
SYSTEMS COULD POTENTIALLY BE
THAT THERE'S BETTER CARE IN
REHAB AND THAT MIGHT BE THE
CASE.
BUT FOR THE MAJORITY OF PEOPLE
WITH SPINAL CORD INJURIES, THEY
DON'T GO TO MODEL CARE CENTERS
AND, THEREFORE, THE DRIVING
FORCE OF THE SHORTENED REHAB IS
REALLY INSURANCE.
AND THE PAYORS ARE DRIVING THAT
AND WHAT IT IS.
SO I THINK THAT'S WHY WHAT OF
THE RECOMMENDATIONS OF WHAT WE
CAN MAKE IN TERMS OF ECONOMIC
BURDEN STUDIES, TO HELP MAKE THE
CASE FOR THE ADVOCATES ON THE
HILL OF WH WHY REHAB SHOULDN'T E
SHORTENED AND WHY WE CAN GET
BACK TO A PLACE WHERE PEOPLE ARE
RECEIVING PROPER REHAB.
SO I HOPE THAT ANSWERS YOUR
QUESTION.
BUT AGAIN, THERE'S NOT A LOT OF
CONCRETE STUDIES OUT THERE THAT
CAN SUPPORT THOSE HUNCHES THAT I
JUST GAVE YOU.
>>THANK YOU.
>>SURE.
>
>>PEPE?
>>THANK YOU, JEN, FOR A REALLY
INSIGHTFUL PRESENTATION.
I WOULD LIKE TO ASK YOU ABOUT
MODEL OF ENGAGEMENT.
DO YOU THINK, YOU KNOW, AS A
PARTICIPANT, YOU KNOW,
PARTICIPANT COST WOULD BE
HELPFUL IN PROMOTING ENGAGEMENT
AND KEEPING THE ENGAGEMENT
GOING, YOU KNOW, I'M NOT TALKING
ABOUT -- I'M TALKING ABOUT -- ON
THE TEAM, BEING THERE WORKING
SIDE BY SIDE WITH THE
RESEARCHERS.
>>YEAH, SO WORKING SIDE BY SIDE
BY RESEARCHERS CAN REALLY HAVE A
PROFOUND IMPACT, AND WE KNOW
THAT THERE'S STUDIES OUT THERE,
ACTUALLY THEY HAVE FURTHER
DEVELOPMENT IN THE DRUG SIDE
THAN THEY DO ON DEVICES, PEPE,
SO SOME OF WHAT WE'VE LEARNED
FROM THE DRUG SIDE IS THAT WE
CAN REALLY IMPROVE CLINICAL
TRIAL RECRUITMENT AND BE ABLE TO
HAVE SMARTER DESIGN BY EMBEDDING
THE LIVED EXPERIENCE EARLY INTO
THE DESIGN OF ANY TYPE OF
RESEARCH PROJECT.
SORE TYPICALLY IF WE'RE
LOOKING -- WHAT'S HAPPENED IN
THE PAST IS WE LOOK TO THE
COMMUNITY WHEN WE'RE RECRUITING
FOR A CLINICAL TRIAL BUT A LOT
OF TIMES IT TURNS OUT THOSE
CLINICAL TRIALS DIDN'T EMBED THE
LIVED EXPERIENCE SO THEY FAIL.
MANY OF THEM FAIL IN TERMS OF
RECRUITMENT.
AND/OR RETENTION OF PEOPLE
WITHIN THOSE CLINICAL TRIALS,
AND THAT'S JUST ONE EXAMPLE.
BUT REALLY, AND I KNOW YOU'RE
INVOLVED IN DEVA DEVICE DEVELOP,
THAT'S ALSO THE INTERFACE OF
WHAT THOSE EARLY INTERFACES WILL
BE LIKE.
ALSO IN PRE-CLINICAL STUDIES,
YOU'RE STARTING TO THINK ABOUT
HOWL THAT WILL TRANSLATE TO
HUMANS.
SO EMBEDDING THAT LIVED
EXPERIENCE AND HAVING A BETTER
UNDERSTANDING CAN HELP IMPROVE
THE DEVELOPMENT OF OUR
PRE-CLINICAL TRIALS AS WELL.
>>DO YOU THINK THAT WE SHOULD
BUDGET FOR PARTICIPANT COST TO
SUPPORT, YOU KNOW, THE EMBEDDING
ON THE TEAMS?
>>YEAH, ABSOLUTELY.
WE ADVOCATE FOR THAT IN THE
NORTH AMERICAN SPINAL CORD
INJURY CONSORTIUM.
IT'S REALLY LOOKING AT LIVED
EXPERIENCE ADVISORS AS RESEARCH
PARTNERS.
AND JUST AS YOU WOULD PAY A
STATISTICIAN OR YOU WOULD PAY A
CLINICAL COORDINATOR, TO REALLY
LOOKING AT THOSE LIVED
EXPERIENCE ADVISORS AS THEY ARE
EMBEDDED IN THE RESEARCH PROCESS
AS WELL, SO REALLY LOOKING AT
HOW YOU CAN PUT THAT IN AS A
LINE ITEM IN YOUR BUDGET WHEN
YOU'RE DOING A GRANT PROPOSAL.
>>THANK YOU.
>>JEN, I JUST HAD A FOLLOW-UP
ON THAT.
WHAT IS YOUR EXPERIENCE FOR
JUNIOR INVESTIGATORS, REALLY
ANYONE AS TO WHEN TO GET
STAKEHOLDER ENGAGEMENT?
I THINK THIS IS PARTICULARLY A
CONCERN FOR THOSE WHO THINK
THEY'RE DOING MORE FUNDAMENTAL
RESEARCH, BUT AS YOU POINTED
OUT, YOU CAN BE MOVING ALONG THE
SPECTRUM FROM TRANSLATIONAL
SCIENCE AND END UP TOO FAR DOWN
THE ROAD.
SO WHAT'S THE RIGHT STARTING
POINT?
>>REALLY THE RIGHT STARTING
POINT, AND THERE'S A LOT OF
MODELS AROUND THIS AND A COUPLE
OF PAPERS ACTUALLY WRITTEN ABOUT
HOW YOU CAN EMBED THE LIVED
EXPERIENCE, FASTER CURES HAS A
FANTASTIC MODEL.
BUT EVEN EARLY IN THE PROCESS,
IN THE IDEATION PHASE, WE HAVE
ONE RESEARCHER WE WORK WITH, HE
LOVES TO TELL THE STORY ABOUT HE
THOUGHT HE HAD THIS GREAT
RESEARCH IDEA AND WAS GOING TO
PUT FOOD FORWARD AN NIH PROPOST
WHEN HE TOSSED THE IDEA PAST A
COUPLE OF PEOPLE WITH LIVED
EXPERIENCE, THEY THOUGHT THIS
HAS NO VALUE TO US.
SO REALLY, HE KIND OF RE-THOUGHT
WHAT THAT IDEA MIGHT BE AND WAS
ABLE TO MOVE ON WITH A FULL
PROPOSAL FOR BASIC RESEARCH.
SO IT'S NEVER TOO EARLY TO EMBED
THE LIVED EXPERIENCE INTO
RESEARCH.
FOR THOSE WITH EARLY CAREERS, WE
ARE ACTUALLY SEEING THIS IN
SPINAL CORD INJURY FOR OUR
COURSE, IS THAT A LOT OF THOSE
THAT ARE VERY NEW TO OUR
INDICATION OF TAKING THE COURSE
TO ACTUALLY REALLY UNDERSTAND
WHAT THAT LIVED EXPERIENCE IS
LIKE, SO THAT THEY CAN START TO
UNDERSTAND HOW THEY EMBED THAT
INTO THEIR RESEARCH.
SO -- AND REALLY INVOLVING THOSE
IN EARLY CAREERS IS PIVOTAL IN
TERMS OF DEVELOPMENT OF PATIENT
ENGAGEMENT.
>>THAT'S GREAT.
THANKS.
CHERI?
>>YEAH, THANKS, JENNIFER, SO
MUCH FOR YOUR PRESENTATION.
REALLY FANTASTIC AND SO
INTERESTING.
JUST A COUPLE QUICK QUESTIONS.
REALLY INTERESTED IN THE
RESEARCH ADVOCACY COURSE FOR
PEOPLE WITH LIVED EXPERIENCE TO
RECEIVE MORE EDUCATION AND
INFORMATION REGARDING WHAT IT
MEANS TO PARTICIPATE IN RESEARCH
AND HOW TO ADVOCATE FOR
RESEARCH.
HOW DO YOU PLAN TO GET THE WORD
OUT ABOUT THAT, AND
SUSTAINABILITY INTO THE FUTURE?
IS IT SOMETHING THAT WILL BE
SUPPORTED BY THE CONSORTIUM?
IS IT LIVE TAUGHT OR SORT OF
EVERGREEN LIVING ONLINE?
THE OTHER THING THAT I'M CURIOUS
ABOUT WITH THE COURSE IS JUST I
FIND SOMETIMES -- KEY QUESTION
IS WILL IT REALLY INVOLVE A
FOCUS ON RESEARCH ETHICS
THINKING ABOUT WHAT DOES IT MEAN
TO PARTICIPATE IN RESEARCH FROM
THE STANDPOINT OF CONTRIBUTING
TO THE SCIENCE AND THAT CAREFUL
PLACE WHERE WE WANT TO ENCOURAGE
PEOPLE TO PARTICIPATE IN
DEVELOPING THE SCIENCE BUT ALSO
NOT -- ASSUME THAT IT'S A
VEHICLE TOWARDS LIKE PERSONAL
CARE BECAUSE I THINK SOMETIMES
THAT CAN BE A SLIPPERY SLOPE
THERE AND A TRICKY INTERPLAY
THERE FOR CONSUMERS.
>>YEAH, ABSOLUTELY.
THAT'S A REALLY GOOD POINT, IF I
CAN TOUCH ON YOUR LATTER FIRST
AND THEN YOUR OW OTHER WEN SECO.
THAT'S A KEY POINT FOR PEOPLE TO
UNDERSTAND, THE DIFFERENCE
BETWEEN REHABILITATION AS A CARE
AND REHABILITATION AS A CLINICAL
TRIAL.
CLINICAL TRIALS ARE NOT CARE.
SO WE DO A LOT IN TERMS OF
EDUCATING ABOUT THAT PROCESS SO
THAT PEOPLE UNDERSTAND WHERE YOU
ARE IN VARIOUS STAGES O OF
DEVELOPMENT, SO REALLY HELPING
TO EDUCATE THOSE WITH LIVED
EXPERIENCE THAT IF YOU ARE GOING
TO DO A CLINICAL TRIAL, IT IS
NOT CARE.
IT IS REALLY BEING AN ADVISOR.
SO UNDERSTANDING HOW THEY CAN
CONTRIBUTE TO SCIENCE IS AN
INCREDIBLE MESSAGE, AND THAT'S A
KEY MESSAGE TO GET OUT TO THE
COMMUNITY.
SO WE'VE BEEN WORKING WITH OUR
COMMUNITY PARTNERS.
WE HAVE OVER 400 MEMBERS WITHIN
THE CONSORTIUM OF VARIOUS
ORGANIZATIONS SO WE'RE GETTING
THE WORD OUT THROUGH THEM, AS
WELL AS THROUGH SOCIAL MEDIAS
AND A LOT OF OTHER MEANS AS
WELL.
SO FROM A SUSTAINABILITY
STANDPOINT, WE DID HAVE SEED
FUNDING FROM THE CRAIG H.
NIELSEN FOUNDATION TO DESIGN AND
DEVELOP THE COURSE, AND WE ALSO
DEVELOPED IT WITH A
SUSTAINABILITY MODEL IN MIND
WITH ADDITIONAL FUNDERS TO KEEP
IT SUSTAINABLE GOING FORWARD.
BECAUSE WE KNOW THAT EVENTUALLY
WE HAVE TO UPDATE THE TOPICS AS
WE MOVE FORWARD SO WE EMBEDDED A
SUSTAINABILITY MODEL INTO THIS.
AND WE DIDN'T CREATE THIS IN A
VACUUM.
THERE ARE A LOT OF OTHER
INDICATION ORGANIZATIONS THAT
ARE DOING VERY SIMILAR AND
ACTUALLY WE LEARNED FROM THEM
BEFORE WE EVEN STARTED DOWN THIS
ROAD, SO INDICATIONS LIKE
CROHN'S AND COLITIS AND
PARKINSON'S DISEASE AND
ALZHEIMER'S, WHERE THEY'RE ALL
WORKING ON EDUCATING THEIR
COMMUNITY OF ADVISORS SO THERE'S
A WHOLE PLETHORA OF INFORMATION
ON HOW TO DEVELOP COURSES LIKE
THIS AND WE JUST CRAFTED OURS
AROUND THE COMMUNITY FOR SPINAL
CORD INJURY.
>>THANK YOU.
>>I'LL TAKE ONE MORE QUESTION.
STEPHANIE.
>>YES, THANK YOU FOR YOUR
DISCUSSION.
I WANTED TO SEE IF YOU COULD
COMMENT ABOUT THE IMPORTANCE FOR
RESEARCHERS TO COMMUNICATE THEIR
FINDINGS TO THEIR PARTICIPANTS.
BECAUSE I WORK WITH SOME
FAMILIES, AND YOU KNOW -- AND I
DO CLINICAL TRIALS AND THAT WAS
A BIG MESSAGE WE GET, IS THAT
NOBODY TELLS US, YOU KNOW, THEY
JUST SEND US A LINK TO A PAPER,
AND THAT'S NOT SUFFICIENT.
CAN YOU SPEAK A LITTLE BIT TO
THAT?
>>GREAT QUESTION, STEPHANIE,
AND THANK YOU FOR THAT, BECAUSE
THOSE THAT WE DO ENGAGE WITH,
WITH OUR PROJECTS, WE ADVOCATE
FOR LAY PERSON FINDINGS, SO WE
DO SHARE THEM OUT WITH THE
COMMUNITY.
MOSTLY IN TIDBITS, BECAUSE WHAT
WE FOUND IS, A, YOU'RE RIGHT, IF
YOU JUST DO A LINK TO A PAPER,
IT'S A VERY TECHNICAL PAPER AND
WE'RE NOT SPEAKING THE SAME
LANGUAGE.
SO ALL OF OUR PROJECT PARTNERS,
WE ASK FOR LAY LANGUAGE.
AND WE ALSO ASK THEM FOR THAT
LAY LANGUAGE IN TIDBITS THAT
PEOPLE CAN DIGEST, BECAUSE ONE
OF THE THINGS THAT WE'VE LEARNED
ALONG THE WAY IS THAT IF WE GIVE
A LONG NARRATIVE, PEOPLE DON'T
REALLY DIGEST IT.
BUT IF WE CAN SAY HERE'S ONE OF
THE FINDINGS FROM THIS STUDY AND
YOU COULD POINT TO A LONGER
NARRATIVE LATER, PEOPLE WILL
ABSORB THOSE FINDINGS, SO
COMMUNICATING THE FINDINGS BACK
TO THE COMMUNITY IS INCREDIBLY
IMPORTANT.
AND THAT'S WHY A LOT OF THE
ADVISORS, THE LIVED EXPERIENCE
ADVISORS THAT WE HAVE PLACED IN
THESE PROJECTS, THEY'RE THE
SOUNDING BOARD FOR HOW DO YOU
MAKE THE LANGUAGE A LAY
LANGUAGE, SO THAT'S ANOTHER AREA
WHERE THE VALUE OF LIVED
EXPERIENCE PARTNERING WITH THOSE
IN RESEARCH CAN HELP COMMUNICATE
THE VALUE AND WHAT THOSE
FINDINGS WERE IN VARIOUS
RESEARCH PROJECTS.
SO THANK YOU.
>>JEN, THANK YOU AGAIN FOR A
WONDERFUL TALK AND DISCUSSION.
WONDERFUL TO HAVE YOU HERE.
TAKE CARE.
>>THANK YOU SO MUCH.
YOU GUYS HAVE A GREAT REST OF
YOUR DAY.
THANK YOU FOR THE OPPORTUNITY.
>>OUR FINAL PRESENTATION TODAY
IS A RESEARCH TALK.
WE'RE HAPPY TO HAVE DR. ABIODUN
AKINWUNTAN TELL US A LITTLE BIT
ABOUT HIS WORK.
HE'S THE DEAN OF THE UNIVERSITY
OF KANSAS SCHOOL OF HEALTH
PROFESSIONS.
HE HAS A LONG LIST OF AWARDS AND
ACCOMPLISHMENTS INCLUDING A
FULBRIGHT SCHOLAR SHIP, HE'S THE
EDITOR-IN-CHIEF OF THE NIGERIAN
JOURNAL MEDICAL REHABILITATION
AND FELLOW OF THE ASSOCIATION OF
SCHOOLS ADVANCING HEALTH
PROFESSIONS AND OF THE ACLRM.
TO IMPROVE DAILY ACTIVITIES IN
NEUROLOGICALLY IMPAIRED PERSONS.
THE FLOOR IS YOURS.
>>OKAY.
CAN I SHARE MY SCREEN?
>>I THINK YOU SHOULD BE ABLE
TO.
>>YES, I AM ABLE TO.
CAN YOU SEE THE PRESENTATION?
>>YES, WE CAN.
>>OKAY.
SO THANK YOU FOR THE
INTRODUCTION, ERIC, AND I'LL
JUST QUICKLY GO THROUGH, I KNOW
I AM THE LAST PRESENTER TODAY,
SO I AM GOING TO KEEP IT SIMPLE
BECAUSE I KNOW MOST OF US ARE
FRIED RIGHT NOW AND JUST WAITING
TO GET OFF THE CALL.
SO I'M JUST GOING TO KEEP IT
VERY SIMPLE AND GO THROUGH IT.
SO IN ALL MY YEARS OF -- WE CAME
UP WITH THIS NEUROCOGNITIVE
CIRCUITS, WE CALL IT, WHERE FROM
A TOP-DOWN APPROACH, THERE IS
CONTROL FROM THE BRAIN LEVEL TO
PERFORMANCE, WHICH IS THE
ACTION.
NOW, FOR DRIVING -- I MEAN
INTEGRATION OF MULTIPLE SYSTEMS,
AND IT RELIES ON SENSORY INPUTS,
MEMORY, ATTENTION, PERCEPTION,
ALL OF THESE ARE INFLUENCED BY
AGE, DISEASE AND MEDICATIONS,
INTELLIGENCE, EXPERIENCE AND
PERSONALITY ALSO PLAY A ROLE.
ALL OF THESE CULMINATE IN WHAT
WE CALL DECISION-MAKING AND
PLANNING, WHICH IS TYPICALLY
REFERRED TO AS EXECUTIVE
FUNCTION.
BUT THERE'S ALSO AN ASPECT OF
DRIVING THAT THESE AUTOMATED AND
A GOOD EXAMPLE IS WHEN YOU
GET -- YOU GET DISTRACTED BY
YOUR PHONE OR SOMETHING, YOU
JUST ARRIVED AT YOUR
DESTINATION.
ALL OF THAT SHOWS IN PERFORMANCE
BEHAVIOR.
SO THERE IS THE INPUT AND THERE
IS THE COGNITIVE PROCESSING, THE
EXECUTIVE PROCESS FUNCTIONING
AND IT LEADS TO DIFFERENT
OUTPUTS THAT WE SEE.
SO HOW DID I GET INTO THIS FIELD
OF STUDY, AS A TRAINED PHYSICAL
THERAPIST IN 1999, I WANTED TO
ENGAGE IN MY MASTERS STUDY AND I
WAS REALLY INTERESTED IN THE
MANY QUESTIONS MY PATIENTS HAVE
ASKED ME, CAN I DRIVE AFTER A
STROKE?
HOWEVER, TO MY DISAPPOINTMENT,
WHEN I READ AS MUCH LITERATURE
AS WAS AVAILABLE AT THE TIME,
THE MORE I READ OF THE
LITERATURE, THE MORE I REALIZED
THAT THE BIGGEST IMPEDIMENT TO
DRIVING AFTER STROKE WAS NOT THE
PHYSICAL ABILITY, IT WAS MORE
THE COGNITIVE AND THE VISUAL
ABILITIES.
I WAS A BIT DISCOURAGED BECAUSE
AS A PHYSICAL THERAPIST I WAS
THINKING WHAT DO I DO IN THIS
AREA.
FORTUNATELY I WAS TAKING A MOTOR
LEARNING CLASS AS ONE OF THE
COURSES I HAD TO TAKE DURING MY
MASTERS AND IT HAPPENED TO BE A
TATIME WHEN WE WERE LEARNING ABT
SIMILARITIES IN CONTEXT BETWEEN
TRAINING AND PERFORMANCE, AND
ACTUALLY THIS IS ALL BASED ON
THE IDENTICAL ELEMENTS THEORY
PROPOSED AS EARLY AS 1914, AND
IT SAYS THE MOST SIMILAR THE
COMPONENT PARTS OF WHO SKILLS OR
TWO PERFORMANCE CONTEXTS ARE,
THE GREATER WILL BE THE AMOUNT
OF POSITIVE TRANSFER.
SO I STARTED THINKING HOW ELSE
COULD YOU TRAIN DRIVING, HOW
ELSE COULD YOU ASSESS DRIVING IF
NOT PUTTING PATIENTS IN A REAL
CAR ON A REAL ROAD.
SO I DECIDED TO VISIT THE
BELGIAN INSTITUTE AND I WAS
INVOLVED IN -- ALL THREE TIMES
I'M SURE MY BLOOD PRESSURE WAS
RAISING THROUGH THE TOPS BECAUSE
OF HOW MANY TIMES WE GOT THROUGH
TRUE NEAR ACCIDENTS.
I DECIDED THIS WAS NOT A
CONTEXTUAL TRAINING THAT I
WANTED TO ENGAGE IN.
COINCIDENTALLY, I WAS PASSING
THROUGH ONE OF THE OFFICES AND I
SAW A CAR IN A BUILDING AND THE
CAR, I ASKED WHAT THE CAR WAS
BEING USED FOR AND I WAS TOLD IT
WAS USED TO TRAIN POLICE
OFFICERS IN TARGET ACQUISITION
DURING DRIVING.
I WAS LIKE, YEAH, WE COULD USE
THIS TO TRAIN DRIVING, IT'S VERY
SIMILAR IN CONTEXT TO DRIVING.
BUT THE DISAPPOINTMENT AGAIN WAS
THERE WAS NO SOPHISTICATED
DRIVING PROGRAM AT THE TIME.
WELL, SUFFICE TO SAY, I INVESTED
TIME IN DEVELOPING A FULL -- IT
TOOK ME NINE MONTHS TO INTEGRATE
A FULL DRIVING PROGRAM IN A
DRIVING SIMULATOR, AND SINCE
THEN, WE HAVE USED THE DRIVING
SIMULATOR TO ASSESS FITNESS TO
DRIVE AFTER STROKE, PARKING
SPARKINSON'SDISEASE, MULTIPLE S,
FITNESS TO DRIVE AFTER
CONCUSSION, AUTOMATED DRIVING
FOR CLINICAL ALZHEIMER'S DISEASE
AND DRIVING IN MILD COGNITIVE
IMPAIRMENT.
I SHOW YOU THE SLIDES TO SHOW
THE THAT ALMOST ALL OF THE
STUDIES WE'VE DONE, AS A MATTER
OF FACT ALL OF THE STUDIES WE
HAVE DONE HAVE PUBLICATIONS AND
I AM HAPPY TO GIVE YOU THE LINKS
TO THOSE PUBLICATIONS AFTER THIS
PRESENTATION.
SO THESE ARE JUST A LIST OF SOME
OF THE STUDIES THAT HAVE BEEN
PUBLISHED.
AGAIN, WE EXTENDED TO
REHABILITATION OF DRIVING,
DIFFERENT NEUROLOGICAL
COGNITIONS, AND OUR FINDINGS
HAVE BEEN PUBLISHED IN SEVERAL
PUBLICATIONS.
SO I'LL JUST TAKE THIS
OPPORTUNITY TO DESCRIBE WHAT I
WOULD CALL THE FLAGSHIP RESEARCH
WE DID THAT BASICALLY BROADENED
OUR HORIZONS OF DRIVING
SIMULATORS.
SO THESE ARE TIED THE EFFECT OF
DRIVING SIMULATOR ON DRIVING
AFTER STROKE, AND IT WAS A
RANDOMIZED CONTROLLED TRIAL IN
WHICH WE RECRUITED FIRST EVER
STROKE PATIENTS WITHIN THE FIRST
THREE MONTHS OF STROKE.
LUCKY ENOUGH, I DID THIS STUDY
IN EUROPE, WHERE PATIENTS ARE
RECOVERING FROM A NEUROLOGICAL
IMPAIRMENT COULD GO TO A
REHABILITATION FACILITY AND STAY
THERE FOR LONG TERM TRAINING.
SO ALL PATIENTS WERE BETWEEN
6 TO 8 WEEKS POST STROKE, I TOLD
YOU WITHIN THE FIRST THREE
MONTHS, THEY WERE FIRST-EVER
STROKE PATIENTS.
EVENTUALLY FROM ABOUT 120, WE
CONSENTED ABOUT 83 AND
RANDOMLY -- INTO A SIMULATOR
GROUP AND A COGNITIVE GROUP.
WE DID 15 HOURS OF TRAINING, ONE
HOUR PER DAY, THREE DAYS A WEEK.
FOR FIVE WEEKS.
SUCH THAT AT THE END OF
TRAINING, MOST OF OUR PATIENTS
WERE BETWEEN 11 AND 15 WEEKS
POST STROKE.
WE HAVE ALMOST THAT EQUAL NUMBER
IN A COGNITIVE GROUP.
IN BELGIUM IF YOU HAVE A STROKE
YOU'RE NOT ALLOWED TO GO BACK TO
DRIVING UNTIL SIX MONTHS AFTER
STROKE AND YOU HAVE TO GO TO A
COMPREHENSIVE EVALUATION.
SO WE TRIED TO LOOK AT THE
PERFORMANCE OF THESE TWO
DIFFERENT GROUPS DURING THE
OFFICIAL 24 -- SIX MONTHS POST
STROKE EVALUATION.
NOW, WITHIN THE PERIOD WE
STARTED THE STUDY, WE HAVE LOST
QUITE AN EQUAL NUMBER OF
PARTICIPANTS DURING TRAINING
FROM 41 TO 36, AND DURING THE
FOLLOW-UP.
IT IS IMPORTANT TO MENTION THAT
DURING TRAINING, NEITHER OF THE
MOST PARTICIPANTS IN BOTH GROUPS
WAS RELATED TO THE TRAINING, IT
WAS JUST THAT THEY WERE NOT
INTERESTED ANYMORE, OR I THINK
ONE OF THEM HAD A SECOND STROKE
AND DROPPED OUT OF THE STUDY.
BUT IT WAS NOT RELATED TO THE
TRAINING.
WHEREAS FOR THE SIMULATOR GROUP,
WE LOST ABOUT 11 IN EACH GROUP,
AGAIN BECAUSE OF JUST THE
DIFFICULTY OF TRACKING THEM
DOWN.
SO I BASICALLY WILL JUST SHOW
YOU A VIDEO OF THE SIMULATION
GROUP.
SO IN THE INTERVENTION GROUP,
PATIENTS WERE -- THIS IS THE
PROGRAM I TOLD YOU WE WROTE.
PATIENTS WERE REALLY IN THE
DRIVING -- IN A CAR, SO THEY SAW
THE PROJECTION ON A BIG SCREEN.
EVERY PART OF THE CAR WORKED,
THEY COULD STEP ON THE GAS PEDAL
EU THE DRIVING WHEEL, THEY WERE
EXPOSED TO DIFFERENT PROGRAMS,
DIFFERENT SKILLS, FOR 15 HOURS.
IN THE COGNITIVE GROUP, THEY
ALSO RECEIVED TRAINING THAT WAS
DRIVING-RELATED BUT THE GOLD
STANDARD AT THE TIME WAS -- OR
THE -- WAS USING CONVENTIONAL
OFF THE SHELF -- SO WE ENGAGED
THE COGNITIVE GROUP OR WHAT WE
CALL THE CONTROL GROUP IN
COGNITIVE TRAINING USING
DIFFERENT GAMES THAT HAVE BEEN
KNOWN TO TRAIN DRIVING-RELATED
COGNITIVE SKILLS.
IN PARTICULAR IS THE PICTURE
THAT I WOULD PAUSE THE VIDEO ON,
YES, THIS, THIS WAS ROADSIDE
RECOGNITION.
WE TRAINED PATIENTS OR
PARTICIPANTS IN BOTH GROUP ON
ROAD SIGN RECOGNITION.
IN THE COGNITIVE GROUP, WE SHOW
THEM A CAR AND SAY DESCRIBE WHAT
WOULD HAPPEN HERE.
SO PARTICIPANT WAS EXPECTED TO
TELL YOU THAT THE PERSON IN THE
YELLOW CAR WAS SUPPOSED TO YIELD
TO THE CROSSING BUS IN FRONT.
NOW, A SIMILAR TREATMENT TOOK
PLACE IN THE SIMULATOR
INTERVENTION.
THE ONLY DIFFERENCE WAS THAT
WHENEVER THE TRAFFIC SIGN POPPED
UP, THE PARTICIPANTS WERE
EXPECTED TO REACT BY DRIVING
THROUGH THE SCENARIO LIKE THEY
WERE DOING REAL LIFE DRIVING.
SO ONE WAS REALLY IN THE CONTEXT
AND THE OTHER WAS NOT BUT
TRAINING THE SAME COGNITIVE
SKILLS.
NOW IN THE DRIVING SIMULATOR,
THE SPECIFIC SKILLS WE COULD
TRAIN BETTER WHEN LANE
POSITIONING, BRAKE REACTION TIME
WHEN THE PARTICIPANTS HAD TO
SUDDENLY STOP, COME TO A FULL
STOP WHEN A STOP SIGN SUDDENLY
APPEARED IN THE MIDDLE OF THE
SCREEN.
JUST LIKE THAT.
IT WAS SUPPOSED TO COME TO A
COMPLETE STOP AND THEN CONTINUE
TO MOVE.
THEN WE ALSO TRAINED OVERTAKING
MANEUVERS WHEN TR THEY HAVE TO S
SLOW-MOVING VEHICLES IN
DIFFERENT CONDITIONS.
LIKE I TOLD YOU, THE ROAD SIGN
RECOGNITION, THEY HAVE TO FIRST
IDENTIFY THE ROAD SIGNS AND THEN
THEY HAVE TO DRIVE REACTING TO
THE ROAD SIGNS IN AN INTEGRATIVE
DRIVING SYSTEM.
SO ONE OF THE THINGS THAT IS
VERY DIFFICULT TO REPRODUCE IN
THE REAL ROAD, ON THE ROAD
DRIVING TRAINING IS GOING
THROUGH DIFFERENT DANGEROUS
SITUATIONS.
OF COURSE IN THE SIMIL SIMULATOE
COULD DO THAT, SO THAT WAS ONE
OF THE THINGS WE COULD TRAIN
WELL.
THE OTHER THING WE COULD TRAIN
WELL IN THE SIMULATOR WAS
ANTICIPATION, WHICH IS REACTION
TO UNEXPECTED ACTIVITIES ON THE
ROAD.
SO BASICALLY QUICKLY GOING
THROUGH THE RESULTS, WHEN WE --
THE TOTAL OF 196, WHEN WE LOOK
AT THE DIFFERENCE IN THE ON-ROAD
DRIVING PERFORMANCE
PRE-TRAINING, BOTH GROUPS
APPEARED QUITE SIMILAR, SCORING
BETWEEN 135 AND 140 OUT OF THE
196 TESTED.
AFTER TRAINING, PARTICIPANTS IN
THE EXPERIMENTAL SIMULATOR
TRAINING GROUP INCREASED
SIGNIFICANTLY TO AN AVERAGE
PERFORMANCE OF 195 OUT OF 196,
WHEREAS THOSE IN THE COGNITIVE
GROUP HAD IMPROVED FROM ABOUT
145 TO 179.
AND WE SAW A RETENTION OF THE
BENEFITS OF TRAINING EVEN THREE
MONTHS POST TRAINING, WHICH WAS
SIX MONTHS AFTER STROKE.
SO AGAIN, THE IMPLICATION OF
THAT WAS THAT WHERE WE'VE HAD
ALMOST A SIMILAR NUMBER OF
PARTICIPANTS IN THE -- WELL, 27%
IN THE SIMULATOR GROUP FAILED AT
PRE-TRAINING BY -- NO, NO,
SORRY, THIS WAS AT THE SIX-MONTH
FOLLOW-UP, THE PARTICIPANTS --
THE SIMULATOR TRAINING, 73 MORE
PARTICIPANTS PASSED THE
SIX-MONTH FOLLOW-UP COMPARED TO
42% OF THE PARTICIPANTS IN THE
COGNITIVE TRAINING GROUP.
IF YOU REMEMBER IN THE PREVIOUS
SCREEN THAT I SHOWED YOU, THEY
HAD ALMOST SIMILAR PERFORMANCES
AT PRE-TRAINING, IN WHICH CASE
MOST ALL OF THEM FAILED.
PREDOMINANTLY MORE
EXPERIMENTAL -- PASSED BY THE
TIME THEY COMPLETED 15 HOURS OF
TRAINING AND SOME FAILED IN THE
CONTROL COGNITIVE GROUP AND WE
SEE THE SAME RESULT HERE AT SIX
MONTHS FOLLOW-UP.
AND THIS IS WHAT YOU SEE HERE.
SO 73% OF THE PARTICIPANTS IN
THE EXPERIMENTAL GROUP ACTUALLY
PASSED THE OFFICIAL ON THE ROAD
DRIVING ASSESSMENT AND WENT BACK
OFFICIALLY TO DRIVING, VERSUS
42% IN THE COGNITIVE GROUP.
WHAT WE -- MOST NUMBER OF STU
STUDIES HAVE NOT DONE, WE
FOLLOWED UM FIVE YEARS POST
COMPLETION OF TRAINING, AND WE
STILL FOUND THAT SOME -- A
HIGHER NUMBER IN THE SIMULATOR
GROUP CONTINUED TO DRIVE
[PLEASE STAND BY]
FAILED THE DRIVING ASSESSMENT AT
PRE-TRAINING, THEN THEY
AUTOMATICALLY SELF-SELECTED INTO
A CONTROL GROUP.
AND IF THEY PASSED -- NO, SORRY.
IF THEY WERE PRONE TO SIMULATOR
SICKNESS, THEY AUTOMATICALLY
SELF-SELECTED INTO A CONTROL
GROUP, AND WHERE THEY CAN
TOLERATE THE SIMULATOR TRAINING,
THEY WERE IN THE SIMULATOR
TRAINING GROUP.
AGAIN, THEY RECEIVED FIVE WEEKS
OF TRAINING, AND WE DID A POST
TRAINING EVALUATION.
WHAT WE SAW THERE, OF THE 36
PARTICIPANTS IN THE TRAINING
GROUP, 29 PASSED PRETRAINING AND
SEVEN FAILED.
AFTER FIVE WEEKS OF TREATMENT,
THE NUMBER THAT PASSED INCREASED
TO 34, AND ONLY TWO STILL FAILED
AFTER TRAINING.
IN THE CONTROL GROUP, OF THE SIX
PARTICIPANTS, FIVE PASSED BEFORE
TRAINING, ONE FAILED BEFORE
TRAINING.
WHAT WE OBSERVED IS, THE SAME
FIVE PEOPLE PASSED AGAIN AND THE
ONE PERSON WHO FAILED DID NOT
SHOW ANY IMPROVEMENT.
WHEN WE LOOK AT THE ON ROAD TEST
OVERALL SCORE, WE SAW THAT THE
AVERAGE WAS BETTER IN FAVOR
OF -- WAS BASICALLY THE SAME IN
BOTH GROUPS, REALLY.
SO WE DID THE SAME THING IN
PATIENTS WITH PARKINSON'S
DISEASE, BUT I REALLY THINK JUST
SHOWING YOU WHAT HAPPENED WITH
STROKE AND MULTIPLE SCLEROSIS,
WE'LL SUFFICE TO SAY WE SAW
ALMOST A SIMILAR TRAIN OF
BENEFIT OF TRAINING IN
PARTICIPANTS WITH PARKINSON'S
DISEASE.
SO WE STARTED TO THINK OF JUST
THE NEUROCOGNITIVE ASPECT OF
DRIVING AGAIN AND SAY LOOK, IN
ALL OF THE STUDIES THAT WE HAVE
DONE, WE HAVE FOUND THAT THE
SAME SET OF COGNITIVE AND VISUAL
SKILLS APPEAR ALMOST IMPLICATED
IN ALL DRIVING SITUATIONS.
SO WE STARTED TO THINK, HOW CAN
WE BETTER UNDERSTAND WHAT IS
HAPPENING TO SPECIFICALLY
INFLUENCE OUR INTERVENTION?
WE STARTED TO LOOK AT DIFFERENT
STUDIES THAT HAVE BEEN DONE ON
NEUROCORRELATES OF DRIVING AND
FOUND THAT MULTIPLE BRAIN AREAS
ARE ACTIVATED DURING DRIVING.
BRAIN ACTIVATION PATTERNS WERE
HIGHLY DEPENDENT ON THE TYPE OF
DRIVING TASK.
AND THERE WAS SIGNIFICANT SHIFTS
IN PATTERNS FROM POSTERIOR AREA
TO THE ANTERIOR AREA, AS DRIVING
TASK COMPLEXITY INCREASES.
IN PARTICULAR WAS THE -- IN
2013, WHERE IT SHOWED THAT THE
POSTERIOR PORTION ESPECIALLY THE
VISUAL PARIETAL CORTEX WAS MORE
ENGAGED WHEN DRIVING ON A
STRAIGHT ROAD WITHOUT DOING
ANYTHING ELSE.
SO THEY SHOWED THAT WITH THIS
IMAGING AND SHOWS VERY LITTLE
ACTIVATION OF THE POSTERIOR
PORTION OF THE BRAIN DURING
STRAIGHT DRIVING, THEN WHEN THEY
WERE TO ENGAGE IN A RIGHT TURN.
WE ALL KNOW WHEN YOU ENGAGE IN A
RIGHT TURN, APART FROM LOOKING
AT WHEN YOUR TURNING INTO, YOU
USUALLY DO NOT INTERACT WITH
OTHER TRAFFIC.
ON THE OTHER HAND, WHEN YOU HAVE
TO MAKE A LEFT TURN, THEN YOU
HAVE TO MOST LIKELY CROSS
ANOTHER SECTION OF THE ROAD AND
YOU HAVE TO PAY ATTENTION TO
OTHER ONCOMING VEHICLES.
NOW THE B PART IS A LEFT TURN
WITHOUT ONCOMING VEHICLE BUT WE
SEE MORE ACTIVATION IN VISUAL
PARIETAL CORTEX.
THE THIRD LEVEL WAS LEFT TURN,
THIS TIME WITH ONCOMING TRAFFIC,
AGAINST ONCOMING TRAFFIC.
THEN WE SEE EVEN GREATER
ACTIVATION PATTERN OF THE VISUAL
PARIETAL CORTEX.
THEN THEY EXTENDED THE STUDY TO
LOOK AT STRAIGHT DRIVING WITH
ANOTHER COMPETING STIMULUS,
WHICH WAS AN AUDIO STIMULUS.
THEN WE SEE THE PREFRONTAL
CORTEX WAS INVOLVED IN ADDITION
TO THE POSTERIOR CORTEX.
AND IT BECAME OBVIOUS THAT MORE
AREAS OF THE BRAIN WERE
ACTIVATED DURING DUAL OR
MULTITASKING, AND THOSE ARE
ACTIVITIES LIKE A COMPLEX TURN,
LEFT TURN AGAINST OPPOSING
TRAFFIC WITH RESPONDING TO
THE -- WHEN IT WAS STRAIGHT LINE
DRIVING AND JUST -- FIRST IT WAS
STRAIGHT LINE DRIVING, VERY
LITTLE ACTIVATION OF ANY PART OF
THE BRAIN, THEN THE AUDIO INPUT
WAS ADDED AND THEN YOU STARTED
SEEING MORE INVOLVEMENT OF THE
LATERAL CORTEX, AND THEN IT
REMAINED LIKE THAT FOR A WHILE.
WELL, WITH LEFT TURN PLUS
TRAFFIC PLUS AUDIO, THEN WE SAW
MORE ACTIVATION PATTERN
INCLUDING THE VISUAL CORTEX
ITSELF PAYING MORE ATTENTION NOW
TO CALCULATING BETWEEN WHEN TO
TURN AGAINST ONCOMING TRAFFIC.
SO WE CAME TO THE REALIZATION
THAT DRIVING IS INDEED A
MULTI- -- TASK ACTIVITIES
USUALLY INVOLVING DUAL TASKING
AND IN MANY CASES IN COMPLICATED
DRIVING REQUIRING HIGHLY
COGNITIVE TASKS.
AN ASPECT OF IT IS A 10 FEET
WALK AND WE STARTED REAL IEDZING
THAT A GOOD NUMBER OF OUR
PARTICIPANTS AND PATIENTS WHO WE
HAD TO SUPPORT DURING THE
10 FEET WALK WERE MORE LIKELY TO
FAIL THE DRIVING ASSESSMENT
COMPARED TO SOMEONE WHO
INDEPENDENTLY WALKED TO THE
10 FEET WITHOUT ANY PROBLEMS.
SO WE STARTED TO LOOK AT WHAT'S
THE RELATIONSHIP BETWEEN WALKING
AND DRIVING.
THE ONE THING WE FOUND OUT IS
BOTH WALKING AND DRIVING ARE
MULTITASKING ACTIVITIES THAT
INVOLVE A COORDINATION BETWEEN
VISUAL, COGNITIVE AND MOTOR
SKILLS.
WE STARTED TO LOOK AT WHAT COULD
BE RESPONSIBLE FOR THAT.
OF COURSE WE ARE SEEING IN THE
PREFRONTAL CORTEX IS ASSOCIATED
WITH DUAL TASKING, ATTENTION AND
WORKING MEMORY.
THESE ARE SOME OF THE SKILLS
THAT ARE INHERENTLY REFLECTED IN
THOSE WITH NEUROLOGICAL PROBLEMS
AND MANY TIMES AFFECTS THEIR
DRIVING PERFORMANCE.
IT ALSO AFFECTS THEIR SPEED OF
PROCESSING AND COMPLEX
DECISION-MAKING AGAIN WHICH IS
THE EXECUTIVE FUNCTION.
SO WE STARTED TO LOOK AT
DIFFERENT STUDIES TO SEE CAN
DRIVING -- CAN USING THE DRIVING
SIMULATOR HELP EXPLAIN SOME OF
THE THINGS THAT ARE HAPPENING IN
DIFFERENT ON MORE SALIENT
COGNITIVE DEFICITS -- PRESUMABLY
RESOLVED CONCUSSION STILL HAD
THAT AFFECTED THEIR DRIVING
PERFORMANCE AND DUAL TASKING
ACTIVITIES THAT WHEN SUCH SKILLS
WERE NOT EASILY PICKED UP BY
REGULAR NEUROPSYCHOLOGICAL
TESTS.
SO WE STARTED LOOKING AT WHO THE
DRIVING SIMULATOR PROVIDE A
HIGHLY INTEGRATED CONTEXTUAL
COGNITIVE DRIVING ASSESSMENT AND
TRAINING PARADIGM.
THEN WE STARTED TO LOOK AT
COGNITIVE -- AT DIFFERENT
ACTIVITIES IN PARKINSON'S
DISEASE.
WE DID TARGET DETECTION DURING
SIMULATOR DRIVING IN PARKINSON'S
DISEASE AND WE STARTED
LOOKING -- SEEING THAT THERE
WERE DIFFERENT PUPILLARY
RESPONSES TO DIFFERENT
INTENSITIES OF COGNITIVE
CHALLENGES DURING DRIVING.
THEN WE STARTED THINKING COULD
THIS BE MEASURE OF COGNITIVE
WORKLOAD.
SO WE WENT ON TO START
LOOKING -- AGAIN WE DID IT AGAIN
IN LOOKING AT PUPILLARY RESPONSE
IN DIFFERENT BREAST CANCER
SURVIVORS, AND AGAIN TO MEASURE
REALTIME ASSESSMENT OF DAY TIME
SLEEPNESS IN DRIVERS WITH
MULTIPLE SCLEROSIS.
SO JUST TO SUMMARIZE EVERYTHING,
WE HAVE STARTED REALIZING THAT A
DRIVING SIMULATOR COULD PERHAPS
HAVE MORE USE IN COGNITIVE
REHABILITATION BEYOND JUST THE
EVALUATION AND TRAINING OF JUST
DRIVING AS A FUNCTIONAL TASK
ITSELF.
THE QUESTION IS, CAN THE
NEUROCOGNITIVE TRAINING BENEFITS
IN A DRIVING SIMULATOR
GENERALIZE TO OTHER SKILLS -- TO
PERFORMANCE OF OTHER SKILLS IN
DIFFERENT NEUROLOGICAL
CONDITIONS.
AGAIN WITH THE UNDERLYING
PRINCIPLE BEING THAT THE SAME
VISUAL COGNITIVE AND MOTOR
SKILLS SEEM IMPLICATED IN
DRIVING AS IN OTHER HIGHLY
COGNITIVELY TASKING ACTIVITIES.
SO WE'RE BEGINNING TO EXPLORE
DIFFERENT ASPECTS OF USE OF THE
DRIVING SIMULATOR.
ONE OF THE OTHER THINGS WE'RE
USING THE DRIVING SIMULATOR FOR
NOW IS LOOKING AT OTHER FORMS OF
IMAGING WHILE DRIVING TO ASSESS
COGNITIVE CAPACITY, COGNITIVE
WORKLOAD, AND DEPLETION OF THAT
COGNITIVE CAPACITY INCREASING
OUR INTENSITY OF THE COGNITIVE
TASKS.
BUT ONE OF THE UNDERCUTS WE HAD
WAS THAT THE DRIVING SIMULATOR
WAS STATIONARY OBJECT IN A BIG
ROOM THAT WAS ONLY ACCESSIBLE IF
PARTICIPANTS OR PATIENTS CAME TO
THE DRIVING LAB.
AND WE STARTED THINKING, COULD
WE IMPROVE OUR NEED TO ADVANCE
THE DRIVING SIMULATOR TO
SOMETHING THAT COULD ACTUALLY GO
TO THE PATIENTS AND PARTICIPANTS
RATHER THAN ALWAYS HAVING TO
COME TO THE DRIVING SIMULATOR.
SECONDLY, IT WAS DIFFICULT TO DO
IMAGING STUDIES BECAUSE OF THE
DIFFERENT LOCATIONS OF OUR
DRIVING LAB AND OUR IMAGING
UNIT.
THEN WE STARTED THINKING OF WHAT
WE COULD DO.
WE CAME UP WITH WHAT WAS CALLED
THE PORTABLE DRIVING SIMULATOR,
WHICH I THINK WAS AN INNOVATIVE
INVENTION AT THE TIME AND I
WOULD SAY WE WERE ONE OF THE
FIRST TO CONVERT IT, FULL
DRIVING INTERACTIVE SIMULATOR
INTO A SMALL FRIDGE-LIKE OBJECT
THAT CAN BE IN ANYBODY'S OFFICE
AND YOU WILL -- IT'S A
SIMULATOR.
THE INTERESTING PART OF IT IS IT
ALSO HAS WHEELS THAT CAN BE
LOCKED WHILE IN USE OR CAN BE
RELEASED IF IT IS TO BE
TRANSPORTED TO ONE ROOM TO THE
OTHER.
YET IT HAS ALL THE COMPONENT
PARTS OF THE DRIVING SIMULATOR,
THERE'S A FULL DRIVING WHEEL
WITH THE BLINKERS OR POINTER
INDICATORS THEY CALL IT, THERE
ARE THE SIDE MIRRORS, THE
REARVIEW MIRROR.
THE INTERESTING THING IS WE ALSO
EQUIPPED THIS SYSTEM WITH A
CAMERA MONITOR UP THERE FOR
TELEHEALTH AND REMOTE TRAINING
AND ASSESSMENT OF DRIVING
RELATED SKILLS.
NOW THIS IS AN UPGRADED VERSION
BECAUSE AS SOON AS WE GOT THE
PORTABLE DRIVING SIMULATORS IN
THE HANDS OF SOME RESEARCHERS AT
OTHER INSTITUTIONS, THE
COMPLAINT WAS THAT THE INITIAL
VERSION HAD ONLY ABOUT
43 DEGREES OF FIELD OF VIEW.
AND DRIVING USUALLY REQUIRES
MORE THAN THAT.
WHAT WE WERE ABLE TO DO IS
IMPROVE ON THIS TO ADD TO OTHER
SIDE SCREENS TO GIVE US ABOUT
135 DEGREES FIELD OF VIEW, AND I
WILL JUST PLAY A VIDEO OF WHAT
IT LOOKS LIKE BECAUSE WHEN YOU
SIT DOWN AND DRIVE THE PORTABLE
DRIVING SIMULATOR, WE HAVE JUST
FINISHED A STUDY AT THE USER
FRIENDLINESS OF THE PORTABLE
DRIVING SIMULATOR AS COMPARED TO
THE REGULAR BIG SIZE FULL BODY
DRIVING SIMULATOR AND THERE WAS
JUST VERY LITTLE DIFFERENCE BUT
FOR THE ACCESSIBILITY AND THE
KOTS, THE PORTABLE DRIVING
SIMULATOR WAS PREFERRED.
AND THIS IS HOW IT WORKS.
SNOW THE CLINICIAN THERE IS THE
ONE DRIVING AND YOU CAN SEE
WHERE HER FEET ARE, SHE CAN
CONTROL -- WHEN SHE HAS TO
BRAKE, SHE TURNS THE STEERING.
AFTER SOME TIME, THE
PARTICIPANTS SAY YOU KNOW, APART
FROM GETTING OVER THE PART THAT
IT'S NOT A REAL CAR, ONCE THEY
START DRIVING AND THEY SEE
THE -- BECAUSE -- PORTABLE AND
EASILY ACCESSIBLE, IT COULD
INCREASE THE PRACTICE FREQUENCY,
AND YOU KNOW, IT CAN BE ACQUIRED
BY DIFFERENT RESEARCHERS,
INSTITUTIONS AND HEALTHCARE
FACILITIES.
SO WE STILL REMAIN VERY BUSY,
WE'RE NOW EQUIPPING THEM WITH
THINGS LIKE EMGs, AND TRYING
TO SEE IF WE CAN BETTER UNRAVEL
THE MYSTERY OF DRIVING AND HOW
TO BETTER ASSESS IT AND IMPROVE
IT.
BUT MORE IMPORTANTLY, MAYBE TO
USE IT --
>> THANK YOU, THAT WAS GREAT.
DO WE HAVE ANY QUESTIONS?
>> I WAS GOING TO ASK WHETHER
YOU INCLUDED DISTRACTIONS LIKE
HAVING A VIRTUAL CAR RADIO OR
CONVERSATION WITH THE DRIVER.
SOME OF YOUR PATIENTS MIGHT HAVE
VISUAL DEFICITS OR NEGLECT,
VISUAL NEGLECT.
DID YOU -- IS IT POSSIBLE FOR
THEM TO DEVELOP STRATEGIES OF
HOW TO BE A BETTER DRIVER AND
MOVE THEIR HEAD TO DEAL WITH
VISUAL ISSUES?
>> THANK YOU FOR TWO VERY GOOD
QUESTIONS.
THE MIDDLE OF THE SITTING WE
WERE IN --
>> IF THEY COME UP WITH THE
RIGHT PRESCRIPTION OF VISION
GLASSES THAT WILL HELP
OVERCOME -- KIND OF -- THIS WAS
REALLY -- THAT IS WHY IN ALL THE
INSTITUTIONS THAT I'VE WORKED
WITH, ONE OF OUR BIGGEST
COLLABORATORS HAS ALWAYS BEEN
THE -- VERY HELPFUL ESPECIALLY
FOR THEIR PATIENTS WITH LOW
VISION.
>> IN A PARTICULAR -- THE
RIGHT-SIDED STROKE AND RIGHT
PARIETAL STROKE OR RIGHT -- TEND
TO HAVE MORE VISUAL -- FOR LEFT
SIDE.
SO THE TRAINING IS UNTIL THE
NEGLECT IS OVERCOME, HOW CAN
THEY COMPENSATE FOR THE VISUAL
FIELD THAT IS NOW ONLY PRESERVED
TO THE RIGHT.
AND HOW COULD THEY DO THAT
DRIVING?
HOWEVER, PATIENTS WITH A
RIGHT-SIDED STROKE TEND TO HAVE
MORE COGNITIVE PROBLEMS AS WELL.
SO THEY ARE MUCH MORE DIFFICULT
TO TRAIN THAN PATIENTS WITH A
LEFT SIDED AFFECTATION BECAUSE
THEY TEND TO HAVE MORE MOTOR
PROBLEM AND WITH THE IN-VEHICLE
ADAPTIVE DEVICES TODAY, THERE'S
SUCH HUGE ADAPTIVE DEVICES THAT
PHYSICAL CHALLENGES DO NOT TEND
TO AFFECT DRIVING THAT MUCH.
SO AGAIN, PATIENTS WITH THE LEFT
SIDED -- STROKE TEND TO DO
BETTER.
THE SAME IS TRUE FOR
RELAPSING -- DIFFERENT TYPES OF
MULTIPLE SCLEROSIS, ESPECIALLY
AS IT ADVANCES.
SAME IS TRUE FOR PARKINSON'S
DEEDS, WHEDISEASE, WHEN YOU'RE IN THE
EARLIEST STAGES, THEY TEND TO DO
MUCH BETTER BECAUSE IT'S ONLY
MILD COGNITIVE IMPAIRMENT.
NOW AS THE PARKINSON'S
PROGRESSES, MORE COGNITIVE
CHALLENGES, ESPECIALLY MEMORY
PROBLEMS START TO COME WITH IT,
AND THEN THEY BECOME MUCH MORE
DIFFICULT TO TRAIN TO THE EXTENT
THAT IT GETS TO A POINT WHERE
YOU REALLY JUST HAVE TO DISCUSS
ALTERNATIVE MEANS OF
TRANSPORTATION WITH THEM BECAUSE
YOU'RE JUST NOT GOING TO MAKE
ANY PROGRESS BECAUSE OF THE
SEVERITY OF THE NEUROLOGICAL
PROBLEM.
AGAIN, THE SAME IS TRUE WITH LOW
VISION.
IT DEPENDS ON HOW MUCH OF THE
VISUAL FIELD IS IMPAIRED.
IF THE MAJORITY OF THE VISUAL
FIELD IS ALREADY BEING AFFECTED
BY THE OPHTHALMOLOGICAL
CONDITION, THERE'S NOT MUCH YOU
CAN DO, SO THE GOOD THING WITH
THE SIMULATOR IS IT ALSO HELPS
DRIVE A REALISTIC DISCUSSION.
WE HAVE PATIENTS THAT FIND IT
DIFFICULT TO UNDERSTAND WHY YOU
WANT TO TAKE AWAY THEIR DRIVING
LICENSE, WHEN SOMEONE ELSE THAT
HAS A SIMILAR PROBLEM WITH
DRIVE.
ALL YOU HAVE TO DO IS PUT THEM
IN THE DRIVING SIMULATOR AND IF
THEY SEE THE FREQUENCY AT WHICH
THEY CRASH, IT SUDDENLY BECOMES
KNOWN TO THEM THAT, WHY AM I
CRASHING?
AND YOU SHOW THEM -- THE GOOD
THING WITH THE DRIVING SIMULATOR
IS NOW THERE'S REPLAY MODE.
YOU CAN REPLAY EXACTLY WHAT THEY
DID AND SHOW THEM WHERE THEY
MADE THE MISTAKE AND THEY'RE
LIKE, OH, I DIDN'T SEE THAT ON
THE SIDE OF THE ROAD.
I DIDN'T SEE THAT CAR COMING
UNTIL IT -- IF IT WAS IN REAL
LIFE, YOU MAY NOT BE ALIVE TO
TELL THAT STORY.
SO THEY EASILY COME TO THE
ACCEPT STANCE THAACCEPTANCE THAT PERHAPS I T'S
TIME TO GIVE UP DRIVING.
>> THAT'S HELPFUL.
THANKS VERY MUCH AGAIN FOR A
GREAT TALK.
WE'RE GOING TO HAVE TO MOVE ON
TO OUR LAST ITEM TODAY, WHICH IS
GOING TO BE -- I'M GOING TO HAND
THE FLOOR OVER TO RALPH TO
DISCUSS THE ELECTION OF THE NEXT
CHAIR.
THANK YOU, ABIODUN.
>> THANK YOU.
>> SO WE VERY MUCH APPRECIATE
THE JOB ERIC HAS DONE AS OUR
BOARD CHAIR FOR THE LAST YEAR
AND A HALF, AND HIS TERM WILL
FINISH WITH THE PLAY 2023
MEETING.
SO WE WANTED TO LOOK AHEAD AND
TRY TO SELECT SOMEBODY ELSE FROM
THE BOARD TO TAKE OVER AND FILL
ERIC'S SHOES AND TAKE OVER AS
BOARD CHAIR.
THE MAIN JOB OF IT AS YOU SEE IS
ACTUALLY RUNNING -- KEEPING THE
MEETING IN ORDER, AND ALSO
WORKING WITH TERESA AND THE
OTHER STAFF -- TERESA, ME AND
THE OTHER STAFF AT NCMRR TO PLAN
THE AGENDA FOR EACH BOARD
MEETING.
SO WE'D LIKE TO TAKE NOMINATIONS
FOR WHO MIGHT WANT TO EITHER
VOLUNTEER THEMSELVES OR TO
NOMINATE OTHER PEOPLE TO BE
BOARD CHAIR, AND THE WAY THE
TIMING WOULD WORK OUT, IDEALLY
IT WOULD BE BEST FOR SOMEBODY
FROM THE SOPHOMORE CLASS,
BECAUSE THOSE PEOPLE THAT HAVE
TWO MORE YEARS TO SERVE AS BOARD
CHAIR, THE MAXIMUM AMOUNT TO
LEARN AND FUNCTION.
AND SO IF WE CAN THINK ABOUT THE
SOPHOMORE CLASS AS BEING IDEAL,
BUT WE'LL ACCEPT ANY OTHER
NOMINATION, AND WE'LL TAKE
NOMINATIONS AT THE END -- RIGHT
NOW, AND ALLOW ELECTION EARRING
OVERNIGHT AND TOMORROW WE'LL
HAVE THE ACTUAL VOTE AS WE THINK
ABOUT THEM.
SO JUST TO GIVE YOU PERSPECTIVE,
THE PEOPLE I'M TRYING TO TARGET
WHO WOULD BE THE SOPHOMORE CLASS
WOULD BE BARBARA BREGMAN, JOSE
CONFLICT OF INTERESTWHO'S -- MAYBE AS AN A NTITIE
ABUSE CLAUSE, WE WOULD LEAVE HIM
OFF.
BOB SAINBURG WOULD BE IN THAT
GROUP, AND FRANCISCO VALERO
WOULD BE SOMEBODY ELSE FROM THAT
GROUP.
SO CAN WE TAKE ANY NOMINATIONS
OR SELF-NOMINATIONS OF PEOPLE
WHO WOULD LIKE TO SERVE AS CHAIR
TO TAKE OVER FOR ERIC?
THE FLOOR IS OPEN.
THE FLOOR IS STILL OPEN.
>> RALPH?
>> YES, SIR.
>> IS THERE A PLACE WHERE WE CAN
FIND A LIST OF THE SOPHOMORE
CLASS SO WE CAN --
>> NO, I JUST MENTIONED THE
FIVE.
>> I KNOW, BUT MY BRAIN IS FRIED
FOR TODAY, I COULDN'T KEEP UP
WHO YOU WERE SAYING.
OR MAYBE YOU CAN GO THROUGH IT
ONE MORE TIME AND WE CAN WRITE
IT DOWN.
>> OKAY, OKAY.
SO THE SOPHOMORE CLASS IS
BARBARA BREGMAN.
JOSE CONTRERAS-VIDAL, DAWN EHDE.
I'M GOING BY THE -- WHO ELSE DID
I -- FRANCISCO --
>> BOB SAINBURG AND FRANCISCO.
>> BY THE WAY, FRANCISCO IS
JOINING US FROM EUROPE, SO I
APPRECIATE HIS DURABILITY HERE.
>> I'LL JUST SAY, ON BEHALF,
FRANCISCO SENT ME A NOTE EARLIER
SAYING HE'S COMMITTED TO A
COUPLE BIG ACTIVITIES RIGHT NOW
AND SO HE UNFORTUNATELY WON'T BE
ABLE TO SERVE IN THIS ROLE.
>> OKAY.
>> I'M WONDERING, RALPH, IF
MAYBE YOU ASK CAN THEY SAY IF
THEY'RE INTERESTED?
>> ALL RIGHT, SO LET'S GO TO
THOSE THREE, SO IF WE ALSO TAKE
OFF PEPE BECAUSE HE'S ALSO
SERVING AS LIAISON, MAY WE ASK
BARBARA, ROBERT AND DAWN IF
THEY'D EACH LIKE TO GIVE A
LITTLE STATEMENT ABOUT THEIR
WILLINGNESS TO SERVE, IF
NOMINATED?
BARBARA?
>> THANKS, EVERYONE.
IF NOMINATED, I WOULD SERVE.
MY PLATE IS PRETTY FULL.
BUT I AM VERY COMMITTED TO WHAT
THE NCMRR IS DOING.
SO I'M HOPING BOB SAINBURG WILL
SAY YES.
>> OKAY.
DAWN, WE APPRECIATE WHAT YOU DID
FOR THE INFRASTRUCTURE PROGRAM.
WHAT SAY OF YOU?
>> I'M GOING TO REPEAT WHAT
BARBARA SAID.
I WOULD BE HAPPY TO DO IT, BUT I
WAS ACTUALLY GOING TO NOMINATE
BOB, SO THERE YOU GO.
>> OKAY.
SO BOB, I GUESS HOW DO YOU FEEL?
>> I JUST FEEL GREAT.
I WOULD -- I MEAN, SAME THING.
MY PLATE IS FULL.
OF COURSE I WOULD -- I'D BE
HAPPY TO DO IT.
I HAVE TO SAY THAT I'M NOT GOOD
AT ORGANIZING OR LEADING
ANYTHING.
SO YOU MIGHT WANT TO RECONSIDER.
BUT --
>> WELL, THAT MAKES IT EASIER
FOR TERESA AND I TO GET OUR WAY.
>> WHATEVER YOU NEED.
>> OKAY.
SO I MEAN, WE'LL LEAVE IT
OVERNIGHT FOR YOU THREE TO THING
ABOUT IT, AND TOMORROW WE'VE
ACTUALLY SCHEDULED A BLOCK OF
TIME TO ACTUALLY, YOU KNOW, GET
SOMEBODY'S NAME AND GO ON FROM
THERE, SO ERIC WILL STILL HAVE
THIS MEETING AND ERIC WILL STILL
DO THE MAY MEETING, BUT WE
WANTED TO GET -- ALSO, YOU KNOW,
OF COURSE ANYBODY ELSE WANT TO
NOMINATE SOMEBODY FROM A
DIFFERENT CLASS?
THAT'S STILL -- THE JUNIORS
COULD STILL SERVE ONE-YEAR
TERMS, THAT'S STILL A
POSSIBILITY.
SO ANYWAY, IT'S BEEN A LONG DAY.
ANY FINAL COMMENTS?
WE VERY MUCH APPRECIATE YOUR
ATTENTION SPAN.
WE'VE HAD SOME GREAT
DISCUSSIONS.
I REALLY -- I REALLY APPRECIATE
YOUR COMMITMENT TO WHAT WE'VE
BEEN DISCUSSING AND YOUR
STICKING WITH IT.
SO TERESA, DO YOU HAVE ANY FINAL
COMMENTS YOU WANT TO SAY BEFORE
WE DISMISS PEOPLE, LET THEM GO
BACK TO THEIR HOTEL ROOMS?
>> I JUST WANT TO ECHO MY THANKS
FOR EVERYONE FOR STICKING OUT A
LONG DAY.
WE HAD DEVELOPED THIS AGENDA IN
THE HOPES OF BEING IN PERSON OR
HYBRID, BUT YOU KNOW, THAT
DIDN'T QUITE WORK OUT FOR US AT
THIS POINT.
BUT WE'RE HOPING FOR MAY.
WE DO HAVE SOME GREAT TALKS
TOMORROW.
WE HOPE YOU ALL COME BACK FOR
THAT.
10:00 A.M. START, WE'LL HEAR
FROM OUR COLLEAGUES AT NICHD AND
AT NIDILRR.
SO THANK YOU VERY MUCH.
AND I HOPE ERIC FEELS THAT HIS
SERVICE AS CHAIR HAS NOT BEEN
TOO ONEROUS, AND THAT WE'VE MADE
IT A GOOD EXPERIENCE FOR HIM.
>> THE PERKS ARE WONDERFUL.
I CAN'T COMPLAIN AT ALL.
GOOD COMPANY ON ALL THE PLANNING
MEETINGS.
>> ALL RIGHT.
SO THANK YOU ALL, AND WE'LL BE
BACK 10:00 A.M., REMEMBER
TOMORROW IT ONLY GOES FROM 10:00 A.M. UNTI L 2:00 P.M. SO
YOU GET OFF A LITTLE EARLY.
SO THANKS AGAIN, AND I'LL SEE
YOU ALL TOMORROW.
10:00 A.M. EASTERN TIME.
>> THANK YOU.