>> WELCOME TO THE SECOND OF THE
NATIONAL ADVISORY BOARD ON
MEDICAL REHABLATION RESEARCH.
I WANT TO REMIND PEOPLE TO KEEP
THEIR VIDEOS OFF WHEN WE'RE ON
VIDEOCAST.
IF ANYONE WANTS TO CATCH UP ON
THE FIRST DAY OF DISCUSSION, WE
HAD GREAT DISCUSSION.
IT WILL BE AVAILABLE ON THE NIH
VIDEOCAST SITE IT'S USUALLY
POSTED A WEEK AFTER THE MEETING
ACTUALLY OCCURRED AND WE LOOK
FORWARD TO TODAY'S SESSION GOING
FROM 10:00 A.M. EASTERN TIME TO
2:00 P.M. EASTERN TIME.
THE FIRST TALK IS GOING TO BE
FROM DR. ANJALI FORBER-PRATT ON
REHABILITATION RESEARCH SHE WAS
AN RESEARCH EXPERT IN VANDERBILT
AND EXPERTISE IN DISABILITY
IDENTITY.
SHE'S RECEIVED A HOST OF AWARDS
INCLUDING THE PARAOLYMPIC MEDALS
AND RECOGNIZED BY THE WHITE
HOUSE AS A CHAMPION OF CHANGE.
SHE'LL TALK WITH OUR FUTURE
PLANS FOR OUR SISTER AGENCY AT
NIDLER.
THANK YOU FOR COMING TO OUR
MEETING.
>> THANK YOU.
I'M EXCITED TON HERE THIS
MORNING.
I'M HONORED TO BE A PART OF THIS
MEETING AND CONVERSATION HERE
TODAY.
AND THE DIVISION IS HOUSED
WITHIN THE ADMINISTRATION FOR
COMMUNITY LIVING WITHIN THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES.
A QUICK ACCESS NOTE, I HAVE
BROWN SKIN AND BLACK HAIR AND
LONG PONYTAIL AND WEARING A
PURPLE SWEATER AND SITTING IN A
MANUAL WHEELCHAIR.
I TRANSITIONED TO THIS
PARTICULAR ROLE AS DIRECTOR
ABOUT 18 MONTHS AGO AND THRILLED
TO SHARE A BIT OF MY STORY AND
VISION FOR NIDILR AND POTENTIAL
CONNECTIONS AND PREVIEW OF OUR
FUNDING OPPORTUNITIES AND
MECHANISMS WE HAVE PLANNED FOR
THIS NEXT YEAR.
I WANT TO SHARE MY CAREER
TRAJECTORY.
I'M A HUGE PROPONENT ABOUT
TRANSPARENCY AND ONE'S IDENTITY.
I FIND THAT SHAPES WHO WE ARE
AND THE WORK WE DO AND WHAT IT
IS WE BRING TO LEADERSHIP IN
TERMS OF SHAPING RESEARCH
AGENDAS AND LEADING WHAT YOU SEE
IS THE COMBINATION AND
INTERSECTION OF MANY IDENTITIES,
PARALYMPIC MEDALISTS AND WOMAN
OF COLOR AND RESEARCH AND
ACTIVIST.
AS I SHARED I AM IN A WHEEL CARE
AND ADOPT FROM INDIA AND I
BECAME PARALYZED FROM THE WASTE
DOWN FROM MYELITIS.
I TRIED TO SEPARATE MY
DISABILITY FROM MY PROFESSIONAL
WORK AND IT WAS MENTORS WHO
CHALLENGED ME TO BRING THEM
TOGETHER WITH MY EXPERIENCE AND
ADVOCACY TO DEEPEN THE RESEARCH
I WAS ENGAGED IN NOW I REALLY
SEE BEING ABLE TO TAKE THE SAME
TWO ELEMENTS AND WEAVE THEM INTO
SHAPING RESEARCH AGENDAS AND THE
WORK WE CARRY OUT WITHIN NIDLRR.
WHEN I THINK OF THE CIRCUITOUS
PATH IT'S BEEN A BEAUTIFUL WAY
TO BRING TOGETHER THE DISABILITY
REPRESENTATION AS WELL AS THE
IMPORTANCE OF ADVOCACY FOR THE
COMMUNITY.
NOW, SITTING IN THIS ROLE AS
DIRECTOR I ALSO HAVE BEEN REALLY
TAKEN ABACK BY THE ABILITY TO
ADVOCATE FROM WITHIN IN TERM OF
HOW CAN WE GROW AND PUSH FOR
GREATER REPRESENTATION OF
INVESTIGATORS WITH DISABILITIES,
FOR EXAMPLE.
HOW CAN WE GROW AND MAKE SURE
THE RESEARCH THAT WE'RE FUNDING
IS BEING RESPONSIVE TO THE NEEDS
OF THE VERY DIVERSE DISABILITY
COMMUNITY THAT EXISTS.
AND SO THESE HAVE BECOME SO MUCH
OF THE COMMON THREADS THAT ARE A
PART OF WHO I AM.
AS A YOUNG CHILD, WHEN I
ACQUIRED MY DISABILITY THE OTHER
ELEMENT OF THIS WAS BEING SO
YOUNG, I ACTUALLY THOUGHT
EVERYONE IN THE WHOLE WORLD HAD
A DISABILITY AND THIS WAS JUST A
PHASE I WAS ONE DAY GOING TO OUT
GROW.
SIMILARLY TO HOW KIDS GO THROUGH
PHASES OF ONLY WEARING ROUND
FOODS OR ONLY WEARING PINK OR
WHAT HAVE YOU.
I THOUGHT ONE DAY I WAS GOING TO
BE ABLE TO WALK.
I THOUGHT THIS WAS A NATURAL
PART OF LIFE AND THIS WAS
SOMETHING THAT EVERYBODY HAD A
DISABILITY AND SOME PEOPLE
LEARNED HOW TO WALK SLOWER THAN
OTHERS AND IT WAS SOMETHING THEY
WAS GOING TO BE ABLE TO DO.
AND THIS ASSUMPTION WENT DEEPER
THAN THAT BECAUSE I THOUGHT IN
ORDER TO GO TO COLLEGE, HAVE A
JOB, START A FAMILY, LIVE ON MY
OWN, I THOUGHT I HAD TO WALK.
THE REASON WAS EVER ADULT WITHIN
MY CIRCLE WOULD WALK.
THEREFORE IN MY MIND I HELD THIS
ASSUMPTION IN ORDER TO GAIN
ACCESS TO OPPORTUNITIES I HAD TO
MAKE MY DISABILITY DISAPPEAR.
THIS LACK OF REPRESENTATION IS
REALLY WHAT THIS COMES DOWN TO.
AND SOMETHING I THINK ABOUT
OFTEN AS I TRIED TO MAKE OUR
MISSION COME TO LIFE FOR THE 67
MILLION AMERICANS AND MAKE SURE
IT IS RELEVANT TO THE
COMMUNITIES WE CARE ABOUT.
OUR MISSION IS TO GENERATE NEW
KNOWLEDGE AND TO PROMOTE ITS
AFFECTIVE USE TO IMPROVE THE
ABILITY TO PERFORM ACTIVITIES IN
THEIR COMMUNITY AND ENSURE
SOCIETY'S CAPACITY TO PROVIDE
FULL ACCOMMODATIONS FOR PEOPLE
WITH DISABILITIES IN ESSENCE WE
SPONSOR RESEARCH AND WORK HARD
TO MAXIMIZE OUTCOMES FOR PEOPLE
WITH DISABILITIES TO BE ABLE TO
FULLY PARTICIPATE IN SOCIETY.
FOR WHO MAY BE LESS FAMILIAR
WITH THIS WE WERE FOUNDED IN
1978 AND WE WERE THE NATIONAL
INSTITUTE ON HANDICAP RESEARCH
AND THANKFULLY THERE'S BEEN NAME
CHANGES AND BECAME THE NATIONAL
INSTITUTE ON REHABL RESEARCH AND
IN 2014 WE ADDED INDEPENDENT
LIVING TO OUR NAME AS WELL SO WE
ARE NOW ALL OF THAT IS US AT
NIDLRR.
WE WERE HAPPY TO JOIN THE NEW
ADMINISTRATION FOR COMMUNITY
LIVING.
THE MISSION IS PEOPLE WITH
ADULTS AND DISABILITY SHOULD BE
ABLE TO LIVE WHERE THEY CHOOSE
AND WITH THE ABILITY TO
PARTICIPATE FULLY IN THEIR
COMMUNITIES.
MY OTHER COUNTERPARTS ACROSS THE
ADMINISTRATION FOR COMMUNITY
LIVING ARE FOCUSSED ON PROGRAMS
AND SERVICES FOR OLDER AMERICANS
AND PEOPLE WITH DISABILITIES
THEY ARE FUNDING THINGS LIKE OUR
CENTERS FOR INDEPENDENT LIVING
AND OTHER PROGRAMS AND SERVICES
WHEREAS WE IN NIDLIRR ARE
FOCUSSED ON THE RESEARCH
COMPONENT.
WHAT I LOVE OUR ADMINISTRATIVE
HOME IS THAT IT ALLOWS FOR OUR
RESEARCH FINDINGS TO BE BETTER
INFUSED TO INFORM THESE PROGRAMS
AND SERVICES THAT ARE HAPPENING
ACROSS OUR AGENCY.
AS I JUST SHARED FOR THOSE WHO
ARE CURIOUS IN TERMS OF THE
POLICY SIDE OF IT WE'RE
AUTHORIZED UNDER TITLE 2 OF THE
REHABILITATION ACT AS I
DESCRIBED.
AND OUR PAIN MOTION IS ON THE
WHOLE PERSON WITH DISABILITY --
OUR MAIN FOCUS IS ON THE PERSON
WITH THE DISABILITY AND WANTING
TO ASSESS AND ENSURE VLD
INDIVIDUALS WITH DISABILITY ABLE
TO FULLY ABLE TO PARTICIPATE IN
SOCIETY.
THIS MEANS THE WORK WE ARE
FUNDING IS DESIGN TO ASSESS WHAT
THE BARRIERS ARE IN TERMS OF
ACCESS TO EMPLOYMENT AND
COMMUNITY PARTICIPATION AND WHAT
THE LIVED EXPERIENCE OF PRODUCT
CONDITIONS MAY BE AND TO ASSESS
THE HEALTH DISPARITY SITUATIONS
ARE THAT INDIVIDUALS WITH
DISABILITIES EXPERIENCE.
AND SO WE UNFORTUNATELY KNOW
THAT THERE ARE TREMENDOUS GAPS
ACROSS EACH OF THESE MAIN AREAS
AND THE NEED IS STILL FREE QUITE
GREAT.
AND THE OTHER PIECE I'VE BEEN
PUSHING IS NIDLIRR GRANTEES AND
THE BROADER REHABILITATION
RESEARCH COMMUNITY TO THINK
ABOUT FROM THIS PERSPECTIVE OF
THE SOCIAL MODEL OF DISABILITY
IS THAT IT'S NOT JUST INDIVIDUAL
LEVEL VARIABLES THAT WE NEED TO
ASSESS, THOSE ARE IMPORTANT,
DON'T GET ME WRONG, BUT WE NEED
TO BE THINKING ABOUT RESEARCH
THAT IS AT THE ENVIRONMENTAL
LEVEL OF VARIABLES AND GROUPS
AND SYSTEMS AND SO FORTH AND
REALLY BEING ABLE TO DIG INTO
THAT BROADER CONTEXT AND BROADER
ENVIRONMENTAL PIECE TO ASSESS
THE MANY COMPLICATED BARRIERS
AND EXPERIENCES THAT INDIVIDUALS
WITH DISABILITIES WHEN
INTERACTING WITH SOCIETY WHETHER
THAT'S AT THE PERSON LEVEL,
SOCIETY LEVEL OR ENVIRONMENTAL
LEVEL.
SO WHEN I THINK ABOUT WHAT I
BRING TO SOME OF THE VISIONS AND
THE WORK THAT I'M REALLY TRYING
TO ADVANCE AT NIDLIRR, I'VE BEEN
FOCUSSED ON TRYING TO EXPAND THE
FIELD OF RESEARCHERS WITH WITH
DISABILITIES.
I KNOW THIS IS SOMETHING THAT WE
TALK QUITE A BIT WITH OUR
COLLEAGUES ON THE CALL.
THIS IS SOMETHING THAT WE AS A
FIELD OF REHABILITATION HAVE
BEEN TRYING TO GROW WITH
INTENTIONALITY AND I THINK IT
STEMS FROM TRYING TO MAKE UP FOR
THE LACK OF REPRESENTATION OF
INVESTIGATORS WITH DISABILITIES
OVER A LONG HISTORICAL PERIOD OF
TIME AND ALSO STEMS FROM
DISABILITY HAS BEEN NAMED AS A
KEY COMPONENT OF THIS WORK AND
MANY HAVE BEEN CHIPPING AWAY FOR
YEARS AND HAVING DISABILITY
NAMES AS AN IMPORTANT ASPECT OF
DIVERSITY WORK ALLOWS US TO
ORGANIZE AROUND THE EXPANSION OF
RESEARCHERS WITH DISABILITIES IN
A MORE THOUGHTFUL AND EXPANSIVE
WAY.
FROM MY PERSPECTIVE TOO I'VE
BEEN TRYING TO ENSURE WE'RE
REACHING PROFESSIONS NOT
CURRENTLY REPRESENTED IN OUR
NIDLIRR OR BROADER
REHABILITATION PORTFOLIO.
WHEN I THINK OF THIS I THINK
ABOUT THE MANY GRANTEES I
INTERACT WITH WHO IN MANY CASES
HAVE STUMBLED THEIR WAY INTO THE
FIELD OF REHABILITATION WORK AND
HAVE BEEN THROUGH A
COLLABORATION WITH A COLLEAGUE
OR MAY HAVE BEEN THROUGH
PERSONAL OR LIVED EXPERIENCE OF
A LOVED ONE OR SOMEONE CLOSE TO
THEM AND I THINK THERE'S A RIPE
OPPORTUNITY TO HELP TO BRING
MORE INTO THE FOLD IN TERMS OF
INVESTIGATORS WHO MAYBE ENGAGED
IN DISABILITY AND REHABILITATION
RESEARCH.
AND YOU KNOW, MORE BROADLY THAN
THAT I BELIEVE IT'S IMPORTANT TO
CONTINUE TO INCREASE
REPRESENTATION OF INDIVIDUALS
WHO HAVE BEEN HISTORICALLY UNDER
REPRESENTED IN RESEARCH ITSELF.
SO NOT JUST RESEARCHERS WITH
DISABILITIES BUT THINKING OF
RESEARCHERS AND COLOR AND OTHER
UNDER REPRESENTED BACKGROUND AND
DEEPEN THE CAPACITY OF THE FIELD
AND TO CREATE TRAJECTORY
PATHWAYS.
UNFORTUNATELY, ACADEMIA AND
RESEARCH HAS A LONG HISTORY OF
SYSTEMIC EXCLUSION OF CERTAIN
VOICES AND SO THIS IS SOMETHING
THAT I'M REALLY WORKING TO CHIP
AWAY AT AS DIRECTOR AND WAYS WE
CAN BE MORE INTENTIONAL TO BE
THAT REPRESENTATION THAT I
ALWAYS WANTED AND TO ENSURE
OTHER PEOPLE WITH DISABILITIES
AND FROM UNDER REPRESENTED
COMMUNITIES ARE A PART OF THE
ENTIRE RESEARCH ENTERPRISE.
AND WHEN I TALK ABOUT THE
RESEARCH ENTERPRISE, THIS IS
EVERYTHING FROM THE PROJECT
OFFICERS TO INVESTIGATORS TO THE
SUBJECTS AND PARTICIPANTS IN OUR
STUDIES AS WELL AS OUR BROADER
STAKEHOLDERS.
AND SO IT'S REALLY TAKING A
CRITICAL LOOK OF THAT
REPRESENTATION ACROSS EVERY ONE
OF THESE AREAS THAT MAKE UP THE
ENTERPRISE.
SO AT NIDLIRR, WE SPONSOR IN
THREE BIG BUCKETS, RESEARCH AND
DEVELOPMENT, CAPACITY BUILDING
FOR THE FIELD AND KNOWLEDGE
TRANSLATION.
AND WHEN I SEE THIS, IT REALLY
IS IMPORTANT TO NOTE THAT WE
VIEW EACH OF THESE AS BEING
CRITICAL COMPONENTS TO THE WORK
THAT WE DO.
THE KNOWLEDGE TRANSLATION
ELEMENT I WANTED TO HIGHLIGHT A
LITTLE BIT WHICH IS WHAT WE
BASICALLY CALL OUR ASPECT
DISSEMINATION AND MAKING SURE
OUR RESEARCH IS ABLE TO BE USED
BY THE COMMUNITIES AND
INDIVIDUALS WITH DISABILITIES AS
WELL THEIR FAMILIES AND OTHER
STAKEHOLDERS AND CLINICIANS AND
PROVIDERS WHO MAY WORK WITH
PEOPLE WITH DISABILITIES TO HAVE
THAT BE EVIDENCE-BASED AND
INFORM THE WORK THEY'RE DOING.
WE BELIEVE IT'S IMPORTANT FOR
RESEARCH FINDINGS TO NOT JUST
SIT ON A SHELF OR SIT ON A
PEER-REVIEWED JOURNAL BEHIND A
PAYWALL BUT HAVE THE FINDINGS BE
USED BY THE COMMUNITY AND BE OUT
IN THE WORLD.
WE FUND ACROSS THREE MAIN
OUTCOME DOMAINS.
THESE ARE HEALTH AND FUNCTION,
EMPLOYMENT AND COMMUNITY LIVING.
THE MOST OVERLAP AND LIKELY MOST
INTERESTED SO MOST THE EXAMPLES
I HAVE IN SUBSEQUENT SLIDES DO
FALL UNDER HEALTH AND FUNCTION
AREA BUT I DO THINK IT'S HELPFUL
JUST TO UNDERSTAND THE CONTEXT
THAT EACH OF THESE BIG DOMAIN
AREAS ARE A KEY COMPONENT AND
THIS MAY NOT BE A SURPRISE FOR
THE GROUP AND OFTEN TIMES A
GRANT THAT MAY BE FUNDED OR A
RESEARCH PROJECT THAT MAY BE
FUNDED GOES TO MORE THAN ONE
OUTCOME DOMAIN AND OFTEN TIMES
COMPONENTS OF A PARTICULAR
PROJECT MAY IMPACT BOTH ELEMENTS
OF HEALTH AND FUNCTION AND
EMPLOYMENT, FOR EXAMPLE.
THE PART I STRUGGLE WITH IN MY
ROLE AND AS I ALLUDED TO WE'RE
WORKING HARD TO FUND RESEARCH
PERTINENT TO THE 67 MILLION
AMERICANS WITH DISABILITIES.
THIS MEANS ALL THE DIVERSITY
WITHIN THAT 67 MILLION INCLUDING
ACROSS THE LIFE SPAN FROM
CHILDREN TO AGING ACROSS
DISABILITY GROUPS AND ACROSS THE
DOMAIN AREAS.
IT'S NO SMALL TASK AND SOMETHING
THAT IS CERTAINLY A CHALLENGE
AND SOMETHING WE ALSO TAKE VERY
SERIOUSLY.
BECAUSE OF THIS BROAD BREADTH, I
THINK IT'S IMPORTANT TO NOTE
MOST OF WHAT WE FUND IS FIELD
INITIATED.
MEANING IT'S UP TO THE APPLICANT
TO MAKE THE CASE AND TO OUTLINE
THE NEED FOR THE WORK BEING
ANNOUNCED AND IT'S BROAD FOR
INTENTION TO ALLOW RESEARCHERS
TO PROPOSE THE WORK THAT IS
NEEDED BASED ON THE BROAD SCOPE
AND THE DIVERSITY OF THE $67
MILLION AMERICANS WITH
DISABILITIES.
SOMETIMES WE HAVE
AGENCY-DIRECTED CALLS THAT MAY
BE ASKING FOR A VERY SPECIFIC
EITHER TOPIC OR EXPLORATION OF A
TOPIC WITHIN A SPECIFIC
SUBPOPULATION.
MORE AND MORE OVER TIME OUR
PORTFOLIO IS MUCH LARGER COMING
FROM THE FIELD-INITIATED
APPROACH BECAUSE OF THE BROAD
BREADTH OF OUR RESPONSIBILITY.
AND I WANT TO SHARE THE NETWORK
OF THE NIDLIRR TRANSLATION
CENTERS.
THESE ARE LINK THAT HAVE
READY-MADE RESOURCES AND SO
FOURTH THAT TAKE THE KEY
RESEARCH FINDINGS THAT CAN BE
USED BY PROVIDERS, FAMILIES,
INDIVIDUALS WITH DISABILITIES
AND SO FORTH.
AND SO AT THE END OF THE DAY,
WHEN I THINK ABOUT WHAT MY GOALS
ARE AT NIDLIRR, IT'S TO LEAD US
WITH INTENTIONALITY WITH THE
NEEDS OF THE RESEARCH COMMUNITY
IN MIND AND BEING ABLE TO MAKE
SURE THAT THE WORK THAT WE ARE
FUNDING IS RIGOROUS AND RELEVANT
TO THE COMMUNITY THAT CAN LEAD
TO THIS TYPE OF KNOWLEDGE
TRANSLATION AND SO FORTH.
ON THE NEXT SLIDE, WE IN THE
GOVERNMENT SURE LOVE OUR
ACRONYMS AND HERE'S NIDLIRR'S
ALPHABET SOUP AND THE FUNDING
MECHANISMS THAT EXIST WITHIN OUR
PORTFOLIO.
I PROMISE THERE WON'T BE A QUIZ
ON THIS AND MY SERVICE DOG SAYS
IT'S OKAY TO BE OVERWHELMED BY
THE ACRONYM.
I WANTED TO HIGHLIGHT A COUPLE
OF MECHANISMS THAT MAY BE OF
INTEREST TO THIS PARTICULAR
GROUP.
COLLECTIVELY FROM THAT ALPHABET
SOUP ON THIS NEXT SLIDE WE'LL
HEAR THE MORE TANGIBLE BIG
PICTURE EXAMPLES THAT I THOUGHT
WOULD BE MOST RELEVANT.
OUR MOLT SYSTEM CENTER.
FINAL CORD INJURY AND TRAUMATIC
AND BURN INJURY MODEL SYSTEMS
ARE CENTERS THAT RECALL
PROVIDING EXCELLENT CLINICAL
CARE IN THE SPECIFIC
SUBPOPULATIONS AS WELL AS
RESEARCH.
ONE OF THE GREAT THINGS ABOUT
OUR MODEL SYSTEM CENTERS AND
PROGRAMS IS THAT WE COLLECT DATA
THAT HAS LED TO AN EXISTING
LONGITUDINAL DATABASE BASED ON
THE SPECIFIC CONDITIONS THAT
ALLOWS FOR OTHER RESEARCHERS TO
BE ABLE TO ASK AND ANSWER
QUESTIONS FROM A LONGITUDINAL
PERSPECTIVE.
THESE ARE SOME OTHER
REHABILITATION RESEARCH AND
TRAINING CENTERED GRANTS THAT
ARE AT THE BIG PICTURE.
SOME OF WHICH HAVE A
SUBPOPULATION FOCUS SUCH AS
COMMUNITY LIVING OF PEOPLE WITH
SERIOUS MENTAL ILLNESS OR AGING
WITH LONG-TERM PHYSICAL
DISABILITY OR MORE BROADLY,
UNIVERSAL DESIGN WITHIN THE
BUILT ENVIRONMENT.
THESE ARE A FEW EXAMPLES I
THOUGHT WOULD BE HELPFUL TO GET
AN UNDERSTANDING OF THE SCOPE.
I WILL POINT OUT THAT THE RRTC
ON DISABILITY STATISTICS AND
DEMOGRAPHICS, THIS IS ONE THIS
GRANTEE WORKS CLOSELY WITH BEING
ABLE TO PULL TOGETHER AVAILABLE
FEDERAL DISABILITY DATA THAT
EXISTS AND BEING ABLE TO MAKE IT
IN A DIGESTIBLE WAY IN TERMS OF
MAKING SENSE OF THE DATA AND
HAVING IT BE ALL IN ONE PLACE.
THIS IS ONE WHEN I WAS A
GRADUATE STUDENT AND EARLY
INVESTIGATOR IT WAS A WONDERFUL
RESOURCE TO HAVE.
I DID THINK IT WOULD BE HELPFUL
TO UNDERSTAND WHAT TYPES OF
IMPAIRMENT GROUPS ARE FOCUSSED
ON ACROSS OUR PORTFOLIO.
SO THIS NEXT SLIDE SHOWS A GRAPH
FROM 2014 TO 2021 AND WE HAVEN'T
YET ADDED 2022 DATA AND I
APOLOGIZE IT'S A BIT SMALL.
THE BLUE LINE AT THE TOP IS
REPRESENTATIVE OF PHYSICAL
DISABILITY.
THE NEXT IS DEVELOPMENT OR
INTELLECTUAL DISABILITY FOLLOWED
BY SENSORY, PSYCHIATRIC
DISABILITY AND THEN WE IT GETS A
LITTLE BIT MORE COMPLICATED
BECAUSE THERE ARE ACROSS
DISABILITY STUDIES AS WELL.
AGAIN, IT'S NOT AN EXACT SCIENCE
AND WHAT MAKES THIS MORE
COMPLICATED THIS IS LOOKING AT
THE PROJECT LEVEL.
SOMETIMES WE MAY HAVE A GRANT
THAT MAY BE GENERATING FIVE
DIFFERENT RESEARCH PROJECTS AND
SO IT DOES MAKE CREATING A GRAPH
LIKE THIS A LITTLE BIT
DIFFICULT.
WE HAVE TO TAKE IT WITH A GRIN
OF SALT BUT I DO THINK IT'S
HELPFUL TO GET THE SNAPSHOT.
THE LARGEST PERCENTAGE OF
PROJECTS OVER TIME ARE FOCUS IN
OUR PORTFOLIO ON PHYSICAL
DISABILITY AND SO I JUST WANTED
TO POINT THAT OUT.
THIS NEXT SLIDE AS I WAS
SHARING, I'M REALLY INVESTED IN
GROWING THE NUMBER OF BOTH
INVESTIGATORS AND GRANTEE STAFF
WITH A DISABILITY.
AND FIRST OF ALL, WHAT I LIKE
ABOUT THE SLIDE IS WE ARE
SELECTING THE DATA AND WE ARE
ASKING THE QUESTION BECAUSE SO
FIRST AND FOREMOST IN ORDER TO
GENERATE A GRAPH LIKE THIS WE
HAVE TO BE ABLE TO ASK THE
QUESTION TO HAVE THIS
INFORMATION TO SHARE AND THERE'S
ROOM FOR GROWTH.
THERE'S AN EXCITING ELEMENT OF
THE STAFF THE NUMBER IS IN THE
HUNDREDS AND FOR CONTEXT TOO WE
HAVE APPROXIMATELY 250 OR SO
ACTIVE GRANTS IN A GIVEN YEAR.
THIS IS EXCITING TO SEE OVER
TIME.
THE NUMBERS GET A LITTLE BIT
MUCH SMALLER WHEN WE LOOK AT
THIS NOT JUST AT GRANTEE STAFF
BUT LOOKING AT THE NUMBER OF
GRANTS WITH A PRINCIPLE
INVESTIGATOR WITH A DISABILITY.
IN 2021 THE NUMBER WAS 45.
AGAIN, ROOM FOR GROWTH AND
OPPORTUNITIES BUT I BELIEVE IN
TRANSPARENCY AND WANTED TO SHARE
THAT INFORMATION WITH YOU ALL.
THE MODEL SYSTEMS PROGRAM IS ONE
I THINK IS IN PARTICULAR
RELEVANT TO THIS GROUP AND IN
ADDITION TO THE LONGITUDINAL
DATA COLLECTION I SHARED, EACH
SITE IS ALSO CONDUCTING THEIR
OWN SITE SPECIFIC RESEARCH AND
THE REALLY EXCITING ELEMENT TO
ME IS THE COLLABORATIVE RESEARCH
THAT OCCURS ACROSS THE MODEL
SYSTEMS PROGRAM.
IT'S A VERY ELABORATE PROCESS OF
EACH MODEL SYSTEM PROPOSING
MODULES AND THEN FOLKS COMING
TOGETHER TO VOTE ON THE MODULES
THAT ARE GOING TO GO FORWARD AND
SIGNING UP TO PARTICIPATE IN
THAT MODULE AND IN THAT
COLLABORATIVE RESEARCH PROJECT.
ANOTHER MECHANISM I THOUGHT
WOULD BE EXCITING TO HIGHLIGHT
IS OUR REHABILITATION
ENGINEERING RESEARCH CENTER ON
EXERCISE AND RECREATIONAL
TECHNOLOGIES FOR PEOPLE WITH
DISABILITIES.
SO THIS IS SOMETHING THAT LED TO
UNIVERSAL DESIGN FITNESS
STANDARDS AND SOMETHING WE'VE
BEEN GRATEFUL TO HAVE SUPPORT
FROM THE U.S. ACCESS BOARD AS
WELL AS OTHERS IN TERMS OF
TAKING THAT RESEARCH HAVING AN
INFORMED POLICY AND INFORMED
GREATER ACCESSIBILITY AND
INCLUSION FOR EXERCISE EQUIPMENT
IN BOTH PUBLIC AND PRIVATE
RECREATION FACILITIES.
THE NEXT SLIDE HERE SOME OTHER
EXAMPLES OF NIDLIRR FUNDED
REHABILITATION RESEARCH AND
TRAINING CENTERS.
SOMETHING THAT HAS A BIT MORE OF
A SLANT AND FOCUS ON THE HEALTH
AND FUNCTION PORTION OF OUR
PORTFOLIO RANGE FROM SOME THAT
MAY BE MORE DISABILITY SPECIFIC
OR SYMPTOM SPECIFIC OR THINGS
THAT ARE A BIT BROADER IN TERMS
OF THE SCOPE AND WORK THAT IS
BEING ADDRESSED.
AND THE WORK GOING NARROWER TO
THE PROJECT LEVEL THESE ARE
EXAMPLES OF FUNDED WORK LOOKING
MORE SPECIFICALLY AT SPECIFIC
RESEARCH QUESTION THAT WE
THOUGHT WOULD BE IMPORTANT TO
HIGHLIGHT.
ONE IS A LONGITUDINAL STUDY OF
STUDENTS WITH LUPUS AND LOOKING
AT THE RELATIONSHIP BETWEEN
ADOLESCENT PATIENT AND PROVIDER
ASSESSMENT AND CHRONIC DISEASE
MANAGEMENT AND ANOTHER RELATED
TO COVID-19 AND THE MENTAL
HEALTH AND WELL BEING OF LATINX
CAREGIVERS AND ANOTHER IN TERMS
OF EXAMINING EFFICACY IN TBI AND
AN INTERVENTION TO SUPPORT
CAREGIVERS.
WHAT I LIKE ABOUT THE PARTICULAR
SLIDE IS THERE'S SOME ELEMENTS
IN THE AND THINGS AT THE
EFFICACY AND SCALE-UP STAGE
SHOWING THE BREADTH OF THE WORK.
COMMUNITY LIVING AND EMPLOYMENT
ARE TWO OTHER KEY AREAS OF OUR
DOMAIN.
THE NEXT SLIDE PROVIDES AN
EXAMPLE OF SOME OF OUR COMMUNITY
LIVING AND PARTICIPATION WORK.
WE KNOW THAT THE FINANCIAL
BARRIERS THAT AFFECT PEOPLE WITH
DISABILITIES DISPROPORTIONATELY
AFFECT THOSE OF US WITH
DISABILITIES.
THIS PARTICULAR GRANT IS AN
INTERVENTION ON FINANCIAL
ENGAGEMENT THAT THAT IS FOCUSSED
ON INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES
AND WE MADE AN INVESTMENT IN
MEASUREMENT DEVELOPMENT.
THIS IS ANOTHER EXAMPLE OF A
STUDY THAT HAS HAD FOCUS ON
ADAPTING AND TESTING MEASURES
PERTINENT TO THE DISABILITY
COMMUNITY THAT CAN THEN CAN BE
USED ONCE VALIDATED WITH THE
POPULATIONS CAN BE USED IN OTHER
TYPES OF STUDIES.
THREES SMALL EXAMPLES RELATED TO
ASSESSING CUSTOMIZED, INTEGRATED
EMPLOYMENT AND LONG-TERM
EMPLOYMENT OUTKOLZ.
I WILL SAY ONE AREA EMERGING AND
NIDLIRR HAS BEEN ON THE CUTTING
EDGE OF FUNDING IS LONG COVID
AND RETURNING TO WORK.
WE HAVE A PROJECT FOCUSSED ON
THAT MORE TO COME RELATED TO
THAT AND HAVE BEEN ALREADY
SHARING KEY FINDINGS AS THINGS
HAVE BEEN EVOLVING WITH THAT
WORK WITH OUR COUNTER PARTS IN
THE DEPARTMENT OF LABOR AND SO
FORTH.
AGAIN MOVING INTO MORE SPECIFICS
FOR OUR FIELD INITIATED PROJECT
MECHANISM, THESE ARE SPECIFIC
PROJECTS THAT AGAIN TAKE IT FROM
THE CENTER LEVEL DOWN TO VERY
SPECIFIC PROJECTS.
THESE ARE AGAIN EXAMPLES OF
TYPES OF WORK THAT ARE COVERED
IN NIDLIRR'S PORTFOLIO AND MEANT
TO BE A RESOURCE BEYOND THIS
CALL IF THERE'S ELEMENTS THAT
PEEK YOUR INTEREST OR WANT TO
LEARN MORE ABOUT I WANTED TO
MAKE SURE YOU HAD THE SENSE OF
THE TYPE OF WORK THAT FITS
WITHIN OUR PORTFOLIO.
YOU CAN GO TO THE NEXT SLIDE.
THE NEXT SLIDE IS AGAIN JUST ONE
OF OUR OTHER MECHANISMS AGAIN,
SAME THING, PROVIDING EXAMPLES
OF TYPES OF PROJECTS THAT MAY BE
OF INTEREST.
THE OTHER PIECE THAT IS OFTEN --
THAT OFTEN TIMES PEOPLE FORGET
ABOUT OR DON'T REALIZE IS THAT
ABOUT A THIRD OF NIDLIRR'S
BUDGET AND PORTFOLIO IS ALSO
INVESTED TOWARDS TECHNOLOGY TO
SUPPORT AND IMPROVE
INDEPENDENCE, COMMUNITY LIVING
AND SUPPORT FOR PEOPLE WITH
DISABILITIES.
SOME OF THE WORK THAT WAS
DESCRIBED IN THE PREVIOUS SLIDES
MIGHT HAVE HAD A DEVELOPMENT
TECHNOLOGY COMPONENT OR SCALE-UP
OF TECHNOLOGY COMPONENT AND SO
FORTH AND SO THESE ARE SOME
EXAMPLES OF PROTOTYPES AND
THINGS DEVELOPED FROM NIDLIRR'S
WORK.
I THINK IT'S EXCITING TO SEE
IT'S NOT JUST WHAT YOU THINK OF
AS RESEARCH WORK BUT DEVELOPMENT
WITHIN THE TECHNOLOGY SIDE OF IT
AND MANY GRANTEES WE ALSO
PROVIDE SUPPORT TO HELP THEM GO
THROUGH THE COMMERCIALIZATION
PROCESS OF TAKING THOSE
ASSISTIVE TECHNOLOGIES OR
TECHNOLOGIES AND HELPING GET IT
TO MARKET.
I ALSO WANTED TO SHARE WE
CURRENTLY ARE GOING THROUGH OUR
OWN LONG-RANGE PLANNING PROCESS.
THIS IS SOMETHING THAT MANY OF
US GO THROUGH WITHIN THE FEDERAL
GOVERNMENT AND PROVIDES A ROAD
MAP OUTLINING PRIORITIES AND
FOCUS AREAS IN TERMS OF WHERE WE
WILL BE EMPHASIZING OUR FUNDING
AND DIRECTION AND VISION FOR THE
NEXT FIVE YEARS.
WE ARE EARLY ON IN THE PROCESS
AND EXCITED FOR THIS PROCESS TO
OCCUR AND AS WE HAVE STARTED THE
CONVERSATIONS WE HAVE BRAIN
STORMED SOME SPECIAL EMPHASIS IN
TERMS OF THE FUTURE DIRECTIONS
AN ELEMENTS WE MAY WANT TO
EMPHASIZE IN OUR LONG-RANGE
PLAN.
NONE OF THESE ARE SET IN STONE
BUT HAVE BEEN TALKING WITH KEY
STAKEHOLDERS INTERNALLY AND
EXTERNALLY WITHIN THE FEDERAL
GOVERNMENT AND WITHIN OUR
RESEARCH COMMUNITY AT LARGE.
SOME ELEMENTS WE'VE BEEN TALKING
ABOUT WANTING TO EMPHASIZE IS
ENHANCE THE COMMUNITY
PARTICIPATORY RESEARCH LINK
BETWEEN DISABILITY, COMMUNITY
ORGANIZATIONS AND INDUSTRY AND
HAVE BEEN TALKING ABOUT THE
RESEARCH AND DEVELOPMENT SPACE.
WE'VE BEEN DISCUSSING WAYS OF
ENCOURAGING INNOVATIVE
METHODOLOGICAL APPROACHES MAKING
SURE WE'RE RIGHT THERE ON THE
CUTTING EDGE.
AS I DESCRIBED EARLIER WHEN
DISCUSSING PUSHING THE FIELD
BEYOND INDIVIDUAL LEVEL RESEARCH
TO MORE SYSTEMIC OR ORGANIZATION
LEVEL AND ENVIRONMENTAL LEVEL
VARIABLES AND ALSO AS ALWAYS
GOING BACK TO THAT BROAD BREADTH
AND SCOPE THINKING ABOUT
PURPOSEFUL INCLUSION OF SPECIFIC
DISABILITY SUBPOPULATIONS THAT
MAY NOT BE INCLUDED IN OUR
CURRENT PORTFOLIO.
THIS ONE FEELS LIKE THE
EVER-MOVING TARGET, I WILL SAY.
I DO THINK IT IS IMPORTANT AND
ONE THING IS SOMETHING WE
BROUGHT TO THE BROADER
REHABILITATION COMMUNITY, WHICH
IS WHAT GAPS EXIST IN THE
FUNDING PORTFOLIOS THAT WOULD
IMPACT OR ADVANCE THE FIELD OF
DISABILITY AND REHABILITATION
RESEARCH.
WHAT WE WANT TO WEAVE INTO OUR
STRATEGY PLANNING IS WHAT ARE
THOSE GAPS AND WHAT HOW CAN WE
BE RESPONSIVE TO THOSE GAPS IN
TERMS OF FUNDING PRIORITIES OR
TOPICS OR THINGS THAT CAN HELP
US GROW THE FIELD OR CONTINUE TO
GROW THE FIELD FOR THE YEARS TO
COME.
AS I THINK ABOUT THE POTENTIAL
OPPORTUNITIES FOR STRATEGIC
COLLABORATION, THE NEXT SLIDE
SHARES SOME OF THE WAYS IN WHICH
NIDLIRR HAS BEEN ENGAGED WITH
COLLABORATIVE WORK.
SOMETIMES IT'S BEEN
CO-SPONSORING EVENTS OR
WORKSHOPS AND AMONG WOMEN WITH
DISABILITY AND PREGNANCY.
WE'VE DONE THIS WITH OTHER NIH
COUNTERPARTS AS WELL.
WE HAVE BEEN ABLE TO HAVE BEEN
ABLE TO EXPLORE CO-FUNDING
MECHANISMS THOUGH THERE'S
ADMINISTRATIVE BARRIERS.
WE WORKED THROUGH THEM IN SOME
CASES.
WE HAVE BEEN IN ENGAGED IN
COLLABORATION OF DEVELOPMENT OF
PRIORITY AREAS AND GRANT IDEAS A
LOT OF CREDIT BACK TO THE
PREVIOUS SLIDE OF GAPS AND HOW
TO BE RESPONSIVE AND SHAPE THE
CREATION OF IDEAS.
THE LAST COUPLE SLIDES ARE MEANT
TO BE RESOURCES TO LOOK LIEU AT
YOUR LEISURE AND LEARN MORE
ABOUT NIDLIRR AND SEE OUR
FUNDING OPPORTUNITY
ANNOUNCEMENTS AND WHAT OPEN
COMPETITIONS WE HAVE.
THE NEXT SLIDE HAS A LINK TO THE
NATIONAL REHABILITATION
INFORMATION CENTER WHICH IS
BASICALLY OUR GOOGLE OF NIDLIRR
FUNDED PROJECTS.
THE NEXT SLIDE SHOWS A SCREEN
SHOT OF WHAT THAT LOOKS LIKE AND
IT'S A REALLY HELPFUL DATABASE
TO GET A SENSE OF WHAT WORK WE
MAY BE FUNDING IN PARTICULAR
AREAS AND ALSO IDENTIFIES WHO
THE PRINCIPLE INVESTIGATOR IS OF
THE PROJECT AND THE PROJECT
OFFICER.
IF THERE'S EVER A SPECIFIC TOPIC
BEING CONSIDERED OF A POTENTIAL
FUNDING OPPORTUNITY OR WANTING
TO GET MORE INFORMATION ABOUT
ANY OF THE PROJECTS I HAD
SHARED, THAT'S A REALLY GREAT
STARTING POINT AS WELL AND MY
SERVICE DOG COLTON HOPES YOU'RE
NOW THIS EXCITED ABOUT NIDLIRR
AND I HAVE CONTACT INFORMATION
BUT WANTED TO OPEN IT UP FOR
DIALOGUE AND QUESTIONS.
THANK YOU.
THANK YOU FOR THE PRESENTATION
AND SHARING YOUR STORY.
SORRY FOR THE TECHNOLOGY
QUESTIONS I HAD AT THE
BEGINNING.
>> THANK YOU FOR THE
PRESENTATION.
I'M GOING ASK A REALLY NAIVE
QUESTION, IF YOU DON'T MIND.
THE WAY I VIEWED NIDLIRR IS
FOCUS ON RESEARCH ON THE
SPECTRUM FOCUSSING ON ACTIVITY
AND COMMUNITY PARTICIPATION
GOALS.
I'M WONDERING IF ONE IS
PREPARING A STUDY FOCUSSING ON
REHABILITATION INFORMATION AND
THE STUDY HAS GOALS INCLUDING
FUNCTIONAL INDEPENDENCE AND
PARTICIPATION WHAT ARE THE
FACTORS THAT YOU'D SUGGEST
CONSIDERING TAKING TO NIH VERSUS
NIDLIRR?
>> THAT'S GY QUESTION.
FIRST, IT'S UP TO OUR PEER
REVIEWERS WHO ARE MAKING THAT
TYPE OF ASSESSMENT AND JUDGMENT.
FROM MY PERSPECTIVE AT NIDLIRR,
WE TEND TO FOCUS MORE ON THE
LONG-TERM OUTCOMES.
SO I WOULD SAY LESS SO
REPRESENTED IN OUR PORTFOLIO
THAT ACUTE ONSET PHASE BUT WE'RE
LOOKING AT MORE OF THE LONG-TERM
OUTCOMES AND IMPACT OF REHAB
FROM THE EXAMPLE YOU JUST
SHARED.
AND SO THAT WOULD BE ONE WAY
THAT I WOULD THINK OF IT.
I THINK THERE'S THE EXCITEMENT
THERE'S MULTIPLE SOURCES OF
FUNDING AND SO FRJ.
SOME IS THINKING ABOUT WHO THE
COLLABORATORS ARE AND THE SCOPE
MAY BE AND SOME ARE DOING MORE
IN TERMS OF CLINICAL TRIAL
RESEARCH AND SCALED UP IN WAYS
THAT YOU'RE JUST NOT SEEING IN
NIDLIRR PORTFOLIO.
SOME DEPENDS ON THE QUESTIONS
BEING ASKED AND AT WHAT SCALE
THAT WOULD BE HOW I WOULD
DESCRIBE IT.
>> I'VE HAD EXPERIENCE WITH THE
MODEL SYSTEM.
I SPENT PART OF MY TIME AT THE
NATIONAL REHAB HOSPITAL AND MY
QUESTION IS FIRST A COMMENT, MY
MIND IS SPINNING WITH THE
POSSIBILITIES FOR INTERACTION
BETWEEN NCMRR AND NIDLIRR.
EVEN BEYOND WHAT IS GOING ON SO
FAR.
MY QUESTION IS DO YOU HAVE ANY
OPPORTUNITIES FOR SUPPORTING
FOLKS AT THE TRANSITION?
JUNIOR FACULTY?
I KNOW THE ARPs ARE TOWARDS
POSTDOCS BUT SOMETHING SIMILAR
TO THE K12 MECHANISMS.
>> YOU'RE CORRECT OUR
CAPACITY-BUILDING GRANTS ARE AT
THE POST-DOCTORAL LEVEL BUT THIS
IS SOMETHING I HAVE CHALLENGED
MY STAFF TO THINK CREATIVELY
ABOUT WOULD THERE BE SOMETHING
AT THE DISSERTATION LEVEL AND
CURRENT GRADUATE STUDENT LEVEL
AS WELL AS COULD THERE BE
SOMETHING THAT IS EVEN MORE
GOING BEYOND EARLIER THAN THAT
AND SUPPORTING UNDERGRADUATE
STUDENT RESEARCH AS WELL.
WE KNOW ACROSS MANY OF OUR
CENTER GRANTS MANY
UNDERGRADUATES AND CURRENT
GRADUATE STUDENTS ARE EMPLOYED
BY THE LARGER CENTER GRANTS BUT
NOT THROUGH A SPECIFIC MECHANISM
SO IT MAKES IT HARD TO TRACK AND
TO SHOW THAT CAPACITY BUILDING
OF THE FIELD SO WE'RE VERY MUCH
LOOKING AT NCMRR AND OTHER FOLKS
ACROSS THE FEDERAL GOVERNMENT TO
BETTER UNDERSTAND WHAT TYPES OF
MECHANISMS LIKE THAT DO EXIST
AND WHERE WE MIGHT BE ABLE TO
BEGIN TO DABBLE IN THE SPACES
BECAUSE I THINK YOU'RE SPOT ON
THAT TO ME I BELIEVE NCMRR AND
NIDLIRR HAVE A DEDICATION TO THE
FIELD OF REHABILITATION RESEARCH
TO MAKE SURE THAT WE ARE GROWING
AND INVESTING IN THE FUTURE
GENERATION.
WE CAN'T FORGET ABOUT THAT
CAPACITY PIECE BECAUSE FOLKS ARE
GOING TO RETIRE AND WHAT'S GOING
TO HAPPEN TO ALL THE WORK THAT
WE KNOW IS STILL GOING TO BE
NEEDED TO BE CARRIED OUT.
SO I THINK IT'S A REALLY
IMPORTANT QUESTION.
>> THANK YOU.
>> SINCE THIS IS A PUB ARE --
PUBLIC MEETING THOUGH IT'S GREAT
TO HAVE ANJALI'S ENERGY, THE
PEER-REVIEWED CULTURE AND THE
APPLICATIONS FOR NIDLIRR AND NIH
ARE DIFFERENT.
YOU SHOULD THEM AS PLAY TO THEIR
STRENGTHS.
WE HAVE TREMENDOUS OPPORTUNITY
FOR COLLABORATIONS AND
TREMENDOUS SYNERGY BUT FOR THOSE
THAT WANT TO SUBMIT APPLICATIONS
TO BOTH AGENCIES, EVEN WE HAVE
THE V.A. HERE TOO.
EACH ARE A LITTLE DIFFERENT AND
YOU SHOULD RESPECT THE
DIFFERENCES AND WHAT EACH OF THE
MANDATES OF THE DIFFERENT
AGENCIES ARE AND WHAT WE'RE
TRYING TO ACHIEVE AND EVEN THE
PEER-REVIEWED PROCESSES
THEMSELVES.
I WANTED TO TAKE IT AS A CHANCE
TO REMIND PEOPLE OF THAT BUT
IT'S GREAT TO SEE ANJALI'S
ENERGY AND VISION.
WE'RE REALLY WELCOMING THAT.
>> WE SPENT TIME YET TALKING
ABOUT IMPACT AND HOW WE FOSTER
THAT WITHIN THE REHABILITATION
COMMUNITY AND DESCRIBED THE
BREADTH OF RESEARCH AT NIDLIRR
BUT I DIDN'T HEAR YOU TALK AS
MUCH ABOUT WHICH IS HOW DO YOU
TAKE FUNDAMENTAL AND MAKE SURE
IT DOESN'T SIT BEHIND THE
PAYWALL OR IN A JOURNAL AND HOW
DO YOU HELP THE RESEARCH GET
FROM THE LABORATORY TO THE
BEDSIDE?
DO YOU HAVE GOOD EXAMPLES OF
PROGRAMS IMPLEMENTED AND
SUCCESSES?
>> FOR US A LARGE PART COMES
FROM INVESTMENT IN THE KNOWLEDGE
TRANSLATION CENTER.
THANK YOU ONE IN PARTICULAR AND
WE HAVE SEVERAL BUT THE IN
PARTICULAR FOR OUR MODEL SYSTEMS
IS A REALLY GREAT EXAMPLE OF WE
INVEST IN INDIVIDUALS TO WORK
WITH THE RESEARCHERS WHO HAVE
CONDUCT THE STUDIES, HAVE THE
WONDERFUL FINDINGS AND SO FORTH
AND TURN THAT INTO MATERIALS
THAT CAN BE DIGESTIBLE,
UNDERSTANDABLE AND USED BY THE
COMMUNITY.
AND IT'S NOT JUST ONE PAGERS.
THEY'VE GONE -- RUN THE GAMUT OF
COMICS AND SOUND CLOUD, THERE'S
THINGS THAT INFO GRAPHICS AND
VIDEOS AND WAYS IN WHICH
INDIVIDUALS ARE INTERACTING WITH
THE FINDINGS AND SO FORTH AND
AVAILABLE IN MULTIPLE LANGUAGES
AND IN SOME CASES, COMING AT IT
FROM THE PERSPECTIVE OF OKAY,
I'M GOING TO TAILER THIS
RESOURCE FOR PHYSICAL THERAPIST
BECAUSE THIS STUDY -- THE FI
FINDINGSS ARE GOING TO BE
RELEVANT AND SOME IT'S COMING AT
IT FROM THAT VERY SPECIFIC LENS
OF BASED ON WHAT THE WORK WAS
THAT WAS FUNDED.
SO THAT WOULD BE THE SHINING
EXAMPLE I'D SHARE WITH THE
GROUP.
>> THANK YOU.
THANK YOU DR. FORBER-PLATT FOR
THE EVERY VIEW OF THE LONGER
TERM OUTCOMES AND THE LIKE.
I WANTED TO TOUCH AND TALK ABOUT
THE PROGRAM THERE'S THE IDEA OF
NOT HAVING SCIENCE STAY BEHIND
THE PAYWALL BUT RATHER MAKE IT
OUT IN THE MARKET THE PERENNIAL
PROBLEM WITH ASSISTIVE
TECHNOLOGIES AND OTHERS
TECHNOLOGIES IS THE QUOTE,
UNQUOTE, SMALL MARKETS.
IS SBIR PROGRAM IS AN IMPORTANT
ISSUE ABOUT ALLOWING THE
TECHNOLOGY TO BE BECOME IN
PEOPLE'S HOMES.
ARE THERE PROGRAMS WITH
ENTREPRENEURSHIP LIKE TRYING TO
BRING THEM IN THE
ENTREPRENEURSHIP ARENA?
IT'S A GREAT OPPORTUNITY THAT
REQUIRES LESS VERTICAL
INTEGRATION THAN BECOMING A FULL
BLOWN INVESTIGATOR.
THAT'S A LONG ARC OF TRAINING
THAT NEEDS TO BE DONE.
IN THIS COUNTRY,
ENTREPRENEURSHIP IS RELATIVELY
AVAILABLE TO ANYONE WITH
AWEBSITE AND IDEA.
IS THERE DISCUSSION ABOUT
PROMOTING ENTREPRENEURSHIP
TRAINING AND OPPORTUNITIES FOR
PEOPLE WITH DISABILITIES IN
GENERAL OR GET THE TECHNOLOGY
OUT IN THE WORLD?
SORRY FOR THE LONG QUESTION.
I WAS TRYING TO PAINT THE
PICTURE OF WHERE I WAS GOING
WITH THIS.
>> TWO EXAMPLES COME TO MIND IN
OUR PORTFOLIO.
ONE IS A NEWLY FUNDED CENTER LED
BY AN INVESTIGATOR AT LANGSTON
UNIVERSITY AND ONE PROJECT THEY
PROPOSED IS AN INCUBATOR
ENTREPRENEUR MODEL SPECIFICALLY
LOOKING AT INDIVIDUALS WITH
DISABILITIES FROM UNDER SERVED
POPULATIONS AND HOW TO PROVIDE
THE MENTORSHIP AND SUPPORT FROM
AN EMPLOYMENT STANDPOINT TO HELP
THOSE IDEAS COME TO FRUITION.
THE SECOND -- AND THAT WAS NEWLY
AWARDED.
NO FINDINGS YET.
THAT'S JUST THE PROPOSED WORK
THAT WILL BE CARRIED OUT.
THE SECOND ONE I ALLUDED TO IS
THE TECH TRANSFER.
I PUT THE LINK IN THE CHAT AND
FOR THOSE WHO MAY NOT SEE THAT
IS IEDA2 IMPACT.org.
IT'S A NIDLIRR-FUNDED IMPACT
CENTER HOUSED AT THE UNIVERSITY
OF PITTSBURGH.
SOMETHING THEY HAVE IS A
SIX-WEEK TRAINING COURSE FOR
THOSE NEW TO ENTREPRENEURSHIP
AND LOOKING TO TRANSLATE TOE
WHAT YOU'RE DESCRIBING IN TERMS
OF BRINGING THOSE TO MARKET AND
YOU DO NOT HAVE TO BE A NIDLIRR
GRANTEE TO GO THROUGH THIS
PARTICULAR PROGRAM.
MANY INDIVIDUALS ACROSS OTHER
SBIR MECHANISMS AND FUNDING FROM
OTHER PLACES OR ABLE TO GET THAT
TYPE OF SUPPORT.
THAT WOULD BE THE OTHER I CAN
POINT TO AS A GREAT EXAMPLE.
>> GOOD MORNING.
I HAVE A QUESTION ON IMPACT AND
LONGER TERM OUTCOMES.
SOMETIMES THERE'S DIFFERENT
SILOS AND WE SEE THE RESEARCH IS
FUNDED BY NIH AND MANY AGENCIES.
AND THEN WE HAVE TO GO TO NIH
AND THE NEXT STEP TO LOOK AT
NIDLIRR.
THE PATH IS NOT VERY CLEAR AND I
THINK IT WOULD BE GREAT.
I DON'T KNOW IF WE HAVE ANYBODY
FROM NSF OR FROM THE D.A. BUT TO
GET TOGETHER ACROSS THE AGENCY
AND HELP P.I.s AND INSTITUTE TO
LOOK AT THE MOST EFFECTIVE ROAD
MAP FROM IDEA TO LONG-TERM
IMPACT.
THAT AS A P.I. SERVING DIFFERENT
AGENCIES I FIND IT'S A GAP THAT
IS REALLY A BARRIER.
HOW DO WE GET THE WHOLE LINE.
>> I LOVE THE QUESTION.
THIS IS SOMETHING THAT
DR. DR. CRUZ AND I HAVE
DISCUSSED AT VARIOUS POINTS OF
WHAT ARE THE TRAJECTORIES OF OUR
VARIOUS GRANTEES WITHIN THE
REHABILITATION WORLD.
WE'VE NOT LOOKED AT IT AS YOU'VE
DESCRIBED BUT AT THE INITIAL
LOOK IT DEPENDS.
THERE'S SO MANY DIFFERENT
PATHWAYS WHICH WAS ALSO HELPFUL
INFORMATION FOR US TO SEE THERE
WAS NOT ONE SINGULAR WAY IN
WHICH AN INVESTIGATOR MAY START
OUT JUST USING AS AN EXAMPLE
START OUT AS A NIDLIRR SWITZER
FELLOW AND BECOME A GRANTEE.
THERE WAS NOT A SINGULAR PATH
THAT FOLKS TENDED TO FOLLOW.
I THINK WHAT YOU'RE DESCRIBING
OF JUST EVEN KNOWING WHAT
POTENTIAL PATHWAYS, IF YOU WILL,
OR POTENTIAL RESEARCH FUNDING
TRAJECTORIES THAT COULD EXIST I
THINK THAT WOULD BE REALLY
INTERESTING.
I APPRECIATE THE IDEA.
>> THERE'S REALLY A GAP.
WHEN YOU GO TO NSF AND IT
BECOMES NIH TERRITORY OR SOME
OTHER AGENCY.
THANK YOU.
>> ONE MORE QUICK QUESTION.
SO I'M VERY EXCITED ABOUT THE
KNOWLEDGE TRANSLATION CENTERS
YOU'VE DESCRIBED AND WE TALKED
ABOUT THIS YESTERDAY.
CAN YOU TELL ME WHETHER THE
CONTACT AND KNOWLEDGE FOUNDATION
CENTER THEY AVAILABLE IN TERMS
OF SERVICES OR IS THERE ALSO
FUNDING AVAILABLE TO SUPPORT THE
SERVICES FOR TRANSLATION
PROJECTS?
>> THAT'S A GATE QUESTION BUT
THEY'RE MEANT TO BE A NATIONAL
RESOURCE FOR THE BROADER
REHABILITATION COMMUNITY.
THEY ARE FUNDED VERY
SPECIFICALLY FROM US TO DO AND
TO CARRY OUT THAT TYPE OF WORK
AND THE REQUESTS THAT COME IN.
OF COURSE THEY HAVE A CERTAIN
SIZE OF BUDGET AND ALL THAT SO
IT DEPENDS ON THE SCOPE AND
NATURE OF REQUESTS BUT, YES,
THEY'RE THERE FOR US ALL.
>> THANK YOU AGAIN FOR A BETTER
PRESENTATION AND EVEN BETTER
DISCUSSION.
THAT WAS HELPFUL FOR ALL OF US.
WE APPRECIATE YOUR TIME.
>> THANK YOU.
>> I'D LIKE TO HAND THE FLOOR
OVER TO RALPH.
>> SO WE'RE MAKING A VERY SLIGHT
DETOUR IN OUR AGENDA, AS WE
DISCUSSED YESTERDAY AFTERNOON,
IT'S GOING TO BE TIME TO PASS
THE BATON FROM ERIC PERREAULT TO
A NEW CHAIR AFTER THE MAY
MEETING.
WE DISCUSSED POSSIBLE NOMINEES
AND SCHEDULED TO HAVE A VOTE
BEFORE LUNCH AT 12:15 TODAY.
HOWEVER, ONE OF THE THREE
NOMINEES HAS TO LEAVE A BIT
EARLY SO IN FAIRNESS I WANTED TO
GIVE EACH OF THE THREE PEOPLE
WHO OFFERED THEIR SERVICES A
CHANCE TO SAY A FEW REMARKS AT
PRESENT JUST PRIOR TO THE VOTE
TO THINK ABOUT IT A LITTLE BIT.
I WANTED TO INVITE THEM TO SAY A
FEW WORDS.
WE'LL HAVE REBECCA RASOOLY'S
TALK AFTER THAT AND THE TALK ON
GLOBAL HEALTH WORLD DISABILITY
DAY FROM WALTER FRONTERA AND AT
12:15 WE'LL COME BACK AND DO THE
ELECTION.
I WANTED TO BRIEFLY TURN THE
FLOOR OVER TO BARBARA BREGMAN
AND DON EDIE TO SAY A FEW
REMARKS ABOUT THEIR GENEROUS
OFFER TO SERVE AS CHAIR.
BARBARA, CAN WE START WITH YOU?
>> THANKS, RALPH.
A BIT OF BACKGROUND FOR THOSE
WHO MAY NOT KNOW ME.
I'M CURRENTLY CHAIR OF REHAB
MEDICINE AT GEORGETOWN AND
DIRECTOR OF RESEARCH EDUCATION
AND TRAINING AT NATIONAL
REHABILITATION HOSPITAL.
I'M A PHYSICAL THERAPIST
CLINICALLY WORKING FOR A NUMBER
OF YEARS.
TAUGHT AT THE PROGRAM AT HOWARD
WHEN WE FIRST DEVELOPED THAT AND
THEN BOLTED AND SPENT MOST OF MY
CAREER IN BASIC NURSE SCIENCE
LOOKING AT PLASTICITY, RECOVERY
FUNCTION AFTER SPINAL CORD
INJURY.
AMONG THE THINGS I THINK ARE
MOST IMPORTANT ABOUT WHAT NCMRR
HAS TO DO AND MOVING FORWARD IS
THE OPPORTUNITY TO WORK BETWEEN
DISCIPLINES AND ESTABLISH THE
INTERDISCIPLINARY,
INTERPROFESSIONAL INTERACTIONS.
AS I SAID EARLIER, THE
OPPORTUNITIES TO WORK BETWEEN
NIDLIRR AND NCMRR LOTS OF
OPPORTUNITIES TO CONTINUE TO
DEVELOP THERE.
I KNOW MY PLATE IS REALLY FULL
WHICH IS WHY I SUGGESTED BOB
YESTERDAY AND I APOLOGIZE FOR
THROWING HIM UNDER THE BUS.
I BELIEVE IN WHAT THEY'RE DEGREE
AND THE LEADERSHIP IS DOING AN
OUTSTANDING JOB AND I THINK EACH
OF US WOULD BE WILLING TO HELP
CARRY US FORWARD IN ERIC'S
FOOTSTEPS.
>> THANK YOU FOR GRACIOUS
REMARKS UNDER STRESS.
NOW WE'LL TURN TO DON.
WOULD YOU LIKE TO MAKE REMARKS?
>> IT'S HARD TO FOLLOW THAT.
MY NAME IS DAWN EDIE.
I'M A PSYCHOLOGIST IN THE
DEPARTMENT OF REHAB MEDICINE AT
THE UNIVERSITY OF WASHINGTON
WHERE I PRIMARILY CONDUCT
CLINICAL TRIALS LOOKING AT PAIN,
FATIGUE AND I PRACTICE WITH
PEOPLE WITH A WIDE RANGE OF
NEUROLOGIC CONDITIONS AND SERVE
AS THE MENTORING PROGRAM CHAIR
FOR OUR INTERDISCIPLINARY
FACULTY OF OVER 150 PEOPLE
ACROSS DIFFERENT DIFFERENT
PROFESSIONS.
MENTORING IS SOMETHING NEAR AND
DEAR TO MY HEART AS IS TRAINING.
I'M ACTIVE IN THE AMERICAN
PSYCHOLOGICAL ASSOCIATION AND
SOON TO BE OUTDOING EDITOR FOR
THE REHABILITATION PSYCHOLOGY
JOURNAL.
I BRING THAT SCIENTIFIC INTEREST
TO THIS AS WELL.
I THINK LIKE THE OTHER TWO
CANDIDATES I'D BE HAPPY TO
SERVE.
I HAD A GOOD EXPERIENCE ON
LEADING THE STAFF AND LEADERSHIP
MADE IT EXTRAORDINARY EASY TO
CO-CHAIR THAT WITH STEPHANIE.
I SUSPECT THEY BRING THE SAME
PROFESSIONALISM AND ENERGY TO
THIS AS WELL.
I THINK MY FIRST RESEARCH GRANT
WAS FUND NCMRR AND IT'S ALWAYS
BEEN A FUNDING MECHANISM WE
FUNDED FROM AND BEEN IMPRESSED
WITH THE TYPE OF RESEARCH THAT
IS FUNDED IN REHABILITATION.
I'M HAPPY TO SERVE AND ALSO
WOULD BE VERY HAPPY TO SEE
EITHER OF THE OTHER TWO
CANDIDATES DO IT AS WELL.
THANK YOU.
>> THANK YOU FOR YOUR GRACIOUS
REMARKS.
BOB
>> FIRST, I WANT TO CLARIFY I'M
NOT GOOD AT ANYTHING SO YOU MAY
WANT TO TAKE THAT INTO ACCOUNT.
I WAS INITIALLY TRAINED AS AN
OCCUPATIONAL THERAPIST AND
WORKED FULL TIME FOR A WHILE IN
PEDIATRICS AND THROUGH MY GRAT
WORK AND POSTDOC, MY WORK HAS
BEEN PREDOMINANTLY IN WHAT ONE
COULD THINK OF AS BASIC NERVE
SCIENCE LOOKING AT MOTOR CONTROL
AND LEARNING MY CAREER HAS BEEN
TRANSLATIONAL AND WE'RE TAKING
THAT WORK AND APPLYING IT TO
CLINICAL INTERVENTION STUDIES
WHICH IS FANTASTIC.
NCMRR, MY FIRST GRANT WAS A K01
AND MY PROGRAM OFFICER WAS LIKE
A MOTHER TO ME.
THE KIND OF SUPPORT NCMRR GIVES
TO EARLY STAGE SCIENTISTS AND
EVEN LATER STAGE SCIENTISTS TO
DO WORK THAT ADDRESSES REHAB IS
PHENOMENAL AND HAS GROWN THE
FIELD PEOPLE SORRY I SAID
SOMETHING ABOUT NOT HAVING THE
TIME OR SOMETHING TO DO THIS.
I WOULD DO ANYTHING I WAS ASKED
BY NCMRR BECAUSE I THINK IT'S AN
IMPORTANT AGENCY AND THEY'VE
DONE SO MUCH FOR REHAB RESEARCH
THAT SAID I'D BE HAPPY IF THE
OTHER PEOPLE RAN THIS ALSO.
THANK YOU.
>> WE'LL COME BACK AT 12:15 AND
SET UP THE VOTE IN A WAY THAT'S
NOT GOING TO REVEAL THE VOTE.
IF ANY OF YOU HAVE TO LEAVE
BEFORE THE VOTE, CONTACT DEBORAH
STEIN.
SHE CAN TAKE YOUR VOTE AHEAD OF
TIME IF YOU WILL NOT BE AROUND
AT 12:15.
WITH THAT WE'LL GO BACK TO OUR
ORIGINALLY SCHEDULED TALK AND
SHIFT GEARS.
IT'S MY JOB TO INTRODUCE THE
NEXT SPEAKER.
MY COLLEAGUE, REBEKAH RASOOLY
JOINED AS THE ASSOCIATE DIRECTOR
OF THE DIVISION OF EXTRAMURAL
AFFAIRS IN 2022.
SHE PREVIOUSLY WORKED AT THE
NURSING INSTITUTE THE DIABETES
INSTITUTE AND NIDA AND OER.
SHE BRINGS OF WEALTH OF
EXPERIENCE OF POLICY TO NICHD.
UNDER THE DIVISION OF EXTRAMURAL
AFFAIRS AND ACTIVES SHE HELPS
COVER GRANTS MANAGEMENT AND
SCIENTIFIC WE VIEW AND POLICY.
SHE'S BEEN A GREAT COLLEAGUE TO
GET OUR HOUSE IN ORDER AND
POLICY GOING AND WILL GIVE
UPDATES ON CHANGES IN NIH POLICY
THAT MAY BE RELEVANT TO THOSE IN
THE EXTRAMURAL COMMUNITY AND I
APPRECIATE HER COMING TO TALK TO
THE BOARD.
REBEKAH, IT'S ALL YOURS.
>> THANK YOU FOR THE KIND
INTRODUCTION.
I LISTENED TO A SIGNIFICANT
FRACTION MEETING YESTERDAY AND
TODAY AND ENJOYED AND
APPRECIATED THE OPPORTUNITY TO
LEARN MORE ABOUT THE WORK AND
YOUR COLLABORATIONS AND SO ON.
LET ME DO MY BEST TO SHARE MY
SKREN AND HOPES IT WORKS OUT
WELL.
SO TODAY WHAT I'M GOING TO TALK
ABOUT IT'S AN INSIDE POSSIBLE
KIND OF STUFF.
I'LL TALK TO YOU ABOUT WHAT
WE'RE DOING TO REORGANIZE THE
EXTRAMURAL PROGRAM AND THE
HIGHEST-LEVEL VIEW IT GET SOME
SENSE OF THE RELATIVELY MAJOR
CHANGE GOING ON INTERNALLY.
THE SECOND THING IS TO TALK
ABOUT POLICIES, SOME EMERGING
THINGS WITHIN EXTRAMURAL I THINK
WILL BE OF MUCH MORE IMMEDIATE
AND PRACTICAL INTEREST TO YOU AS
A GROUP AND TALK A BIT ABOUT
THINGS WE'RE WORKING ON GOING
FORWARD TO MAKE OUR WORK BETTER
TO SERVE THE IMPORTANT RESEARCH
NEEDS WE'RE TRYING TO FULFILL.
SO JUST A MOMENT OR TWO ABOUT
THE REORGANIZATION OF OUR
EXTRAMURAL PROGRAM.
SO CURRENTLY, THE NICHD HAS
DOCTOR BIANCHI AS THE DIRECTOR
AND A BUNCH OF OFFICES AND
DIVISIONS UNDER HER INCLUDING OF
COURSE THE INTRAMURAL NCMRR AND
ONE DIVISION DIVISION OF
EXTRAMURAL RESEARCH.
AS PART OF RE-ORGANIZATION THE
QUESTION WAS TO ASK DOES IT MAKE
SENSE TO ORGANIZE IN THIS WAY
ANDS THE ASSESSMENT IT WAS TOO
BIG AND OFFERED TOO FEW
OPPORTUNITIES FOR THE STAFF AND
TOO LITTLE COORDINATION OF
PROGRAMMATIC AND POLICY
ACTIVITIES AN TOO LITTLE BACK
UP.
THINGS HAPPEN.
IT'S IMPORTANT TO HAVE A BIT OF
REDUNDANCY IN ANY ORGANIZATION.
SO WHAT EMERGED FROM ALL THAT
PLANNING WAS TO SPLIT INTO TWO
DIVISIONS.
ONE EXTRA MURAL RESEARCH AND ONE
A DIVISION OF EXTRAMURAL
ACTIVITY I CALL THEM IN MY OWN
MIND SCIENCE AND BUSINESS.
AND WHERE WE DO IN-HOUSE
APPLICATION AND THE REVIEW
BRANCH AND VARIOUS POLICIES.
MY COLLEAGUE, IS THE DIRECTOR OF
THE DIVISION OF EXTRAMURAL
RESEARCH AND NOW I'VE BEEN
APPOINTED SINCE APRIL AS THE OF
EXTRAMURAL ACTIVITIES.
LET'S ALL I WANTED TO SAY ABOUT
THAT.
AGAIN, I HOPE THIS WILL BE
COMPLETELY TRANSPARENCY TO YOU
AND THE ONLY IMPACT THAT YOU'LL
SEE IS OF THE TREMENDOUS
ENTHUSIASM AND ENERGY AND TALENT
OF ALL OF MY COLLEAGUES AS WE
MOVE FORWARD.
TO MOVE ON A BIT I WANTED TO
TALK ABOUT SOME TOPICS THAT ARE
OF IMMEDIATE RELEVANCE.
ONE IS THE TOPIC OF SPECIAL
COUNCIL REVIEW AND I KNOW YOUR
BOARD'S LIAISON HEARD QUITE A
BIT ABOUT THIS IN SEPTEMBER WHEN
I PRESENTED THIS TO THE NICHD
LARGER ADVISORY COUNCIL.
SO WHAT IS SPECIAL COUNCIL
REVIEW?
THIS WAS STARTED IN 2012, AN
NIH-WIDE POLICY CONGRESSIONALLY
INFLUENCED, SHALL WE SAY.
THEY TAKE WHAT WE DO IS ALL
APPLICATIONS FROM PRINCIPLE
INVESTIGATORS WHO ARE ALREADY
RECEIVING LARGE AMOUNTS OF NIH
FUNDING, THOSE APPLICATIONS HAVE
TO BE CONSIDERED INDIVIDUALLY BY
THE ADVISORY COUNCIL.
IF WE GET AN APPLICATION FROM
SOMEONE WHO GETS 2 MILLION OF
TOTAL COSTS IN EXISTING NIH
GRANT.
A WELL FUNDED INVESTIGATOR THEN
WE HAVE TO TAKE ANY NEW
APPLICATIONS FROM THAT
INVESTIGATOR INDIVIDUALLY TO OUR
COUNCIL AND SAY DO YOU WANT GIVE
THE INVESTIGATOR MORE MONEY.
WE ONLY TAKE RESEARCH PROJECT
GRANTS.
WE DON'T REALLY COUNT RESOURCE
GRANTS OR TRAINING AWARDS.
THAT'S THE NIH-WIDE POLICY.
NOW, OVER THE PAST COUPLE YEARS
WE'VE LOOKED AT HOW WE
DISTRIBUTE NIH DOLLARS.
PART OF THAT HAS LED TO COUNCIL
REVIEW.
HERE'S A LOOK AT THE COMMUNITY
AND A STATISTICIAN AND THEY
LOOKED AT FOUND SOMETHING
REMARKABLE.
40% OF NIH DOLLARS GO, TO
THAT'S RIGHT, 10% OF
INVESTIGATORS.
THAT IS REALLY A LOT OF MONEY
AND WHAT IS PERTURBING ABOUT
THIS IS THE TOP 10 INVESTIGATORS
IN TERMS OF FUNDING TEND TO BE
MORE MALE ON AVERAGE, MORE WHITE
AND LESS HISPANIC AS A POOL.
AND 40% OF ALL THE FUNDING.
IT'S BEEN PRETTY CONSIDERS.
ALL WE'VE DONE HAVEN'T REALLY
DENTED THIS GOING BACK ALMOST 40
YEARS.
THAT SEEMS LIKE A LOT OF OUR
RESOURCES ARE CONCENTRATED IN A
SMALL NUMBER OF PEOPLE.
I THINK WHEN YOU DO THAT YOU GET
A CERTAIN ORTHODOXY OF
SCIENTIFIC RESEARCH DIRECTIONS
AND HYPOTHESES AND SO ON BECAUSE
IT'S A RELATIVELY SMALL NUMBER
OF PEOPLE FROM THE ENTIRE BODY
OF THOSE WHO ARE RESEARCHERS.
ALONG WITH OTHER INSTITUTES,
WE'RE LOOKING AT HOW YOU MIGHT
SPREAD THE MONEY A LITTLE BIT
MORE.
REDUCE THE CONCENTRATION OF
FUNDING.
ONE APPROACH IS TO LOWER THE
THRESHOLD TO BE CONSIDERED A
WELL-FUNDED INVESTIGATOR IT
WON'T BE $2 MILLION OR MAYBE $1
MILLION OR $1.5 MILLION OR WE
COULD LOWER THE PAY LINE.
WE CAN SAY, FINE, YOU CAN SUBMIT
NEW APPLICATIONS BUT WE'RE GOING
TO HOLD YOU TO A LOWER PAY LINE.
WE'RE GOING TO SAY, YOU'RE GRANT
HAS TO SCORE BETTER THAN OTHERS
THAT WE'RE GOING PAY.
ANOTHER THING WE COULD DO IS
SIMPLY REQUIRE FOR EACH GRANT WE
FUND THE INVESTIGATOR MAINTAIN A
HIGHER EFFORT LEVEL AND SINCE
EACH INVESTIGATOR ONLY HAS SOME
EFFORT IF WE OCCUPY MORE OF THE
EFFORT ON INDIVIDUAL
APPLICATIONS WE'RE DE FACTO
REDUCING THE NUMBER OF
APPLICATIONS THE INVESTIGATOR
CAN PARTICIPATE IN.
THE THING THAT OTHER INSTITUTES
HAVE LOOKED AT IS CLOSE THE
ELIGIBILITY LOOPHOLES THAT ALLOW
A LOT OF APPLICATIONS TO KIND OF
OTHER APPLICATION TO BYPASS THE
SYSTEM.
THERE'S IN PUNCH LINE HERE.
SO WE'RE COMING BACK IN JANUARY
AND CONTINUE THE DIALOGUE HOW TO
ACHIEVE A BALANCE AND AWARD THE
SCIENCE INVESTIGATORS DO AND
ALLOW A LARGER GROUP OF
INVESTIGATORS WITH THEIR
INNOVATIVE IDEAS AND APPROACHES
TO GET SOME FUNDING AND MOVE
FORWARD.
AND MY COLLEAGUE THE HEAD OF O
OFFICE OF DATA SCIENCE AND
SHARING AT NICHD SPOKE WITH YOU
AT SOME LENGTH AND SO I WON'T GO
ON IN GREAT DETAIL BUT IN ABOUT
A MONTH FROM NOW THE NEW NIH
DATA MANAGEMENT AND SHARING
POLICY WILL GO INTO EFFECT IN
ORDER TO MAXIMIZE DATA SHARING.
THAT MEANS WITH LIMITED
EXCEPTIONS, VIRTUALLY EVERY
GRANT APPLICATION THAT COMES
INTO NIH STARTING JANUARY 25
WILL HAVE A SHARING DATA PLAN
AND SHARES DATA IN REPOSITORIES
IN A TIMELY MANNER.
THE PLAN IS TO DESCRIBE THE PLAN
TO SHARE AND IN WHAT
REPOSITORIES AND SO.
THEN THE PLANS WILL COME AND
WE'LL ASSESS THEM AND AWARD THE
GRANTS AND EVERY YEAR WE'LL
MONITOR COMPLIANCE WITH THE PLAN
THE INVESTIGATOR SUBMITTED.
I ALSO WANTED TO REMIND YOU THAT
THESE PLANS WILL NOT GET PEER
REVIEW THE BUDGET WILL GET PEER
REVIEW.
IT COSTS MORE MONEY TO MAKE DATA
HIGHLY USABLE TO MAKE THE CODE
BOOKS AVAILABLE AND CLEAN
EVERYTHING UP AND YOU'RE ALLOWED
TO ASK OR FOR THE COSTS AND THE
REVIEWERS WILL SEE YOUR
REQUESTED BUDGET BUT WILL NOT BE
REVIEWING THE PLANS.
SO THIS SAY PRETTY BIG CHANGE.
GRANT WRITING IS DIFFICULT
ALREADY AND THIS IS ADDING
ANOTHER PIECE TO GRANT WRITING.
NIH HAS WORKED HARD TO HELP THE
RESEARCH COMMUNITY AND
INFORMATION ON WRITING PLANS AND
INFORMATION ON THINKING WHAT
DATA REPOSITORY YOU MAY USE AND
THERE'S BEEN TRAININGS AND THOSE
ARE AVAILABLE AS VIDEOS TO WATCH
AND THERE ARE MATERIALS TO HELP
DEVELOP INFORMED CONSENT THAT
INFORM THE PARTICIPANT ABOUT THE
PROPOSED SHARING.
ALL THIS ADDITIONAL INFORMATION
AS WELL IS AT SHARING.NIH.gov.
AND WE'RE NO SLOUCHERS.
DR. BIARCHNCHI START THE OFFICED
DIRECTED THE FIRST DIRECTOR IN
THE LAST YEAR OR SO.
WE'RE WORKING HARD INTERNALLY TO
TRAIN OUR NICHD STAFF TO
FAMILIARIZE THEM WITH THE POLICY
AND RESOURCES SO WHEN YOU CALL
THE PROGRAM STAFF THE ONES
YOU'VE SPOKEN HIGHLY ABOUT IN
THE LAST HOUR, THEY CAN PROVIDE
USEFUL ADVICE ABOUT HOW TO THINK
ABOUT THIS AND WE'RE ALSO
DEVELOPING SOME TOOLS WE'RE
DEVELOPING EXAMPLE PLANS AND
HAVE A FEW PLANS SOON ON OUR
WEBSITE THAT ARE EXAMPLES OF
WHAT A PLAN MIGHT LOOK LIKE.
IN DIFFERENT DOMAINS.
CLINICAL AND NON-CLINICAL AND
MODEL ORGANISMS.
WE'RE ABOUT TO POST HELPFUL
TIPS.
A CHEAT SHEET AND HELPING GUIDE
TO THE REPOSITORY.
I WANT TO ENCOURAGE YOU WHEN YOU
GET READY TO WRITE YOUR PROPOSAL
AND THROW UP YOUR HANDS IN
DESPAIR YOU COME TO THE WEBSITE
THAT MAY PROVIDE HELPFUL TOOLS.
IN THE LAST FEW MINUTES I WANTED
TO COVER THINGS IN PROCESS.
IT'S CREATING A MORE NIMBLE
ACCESS AND MOST OF OUR MONEY
THAT WE SPEND, WE SPEND IN
RESPONSE TO APPLICATIONS YOU
SEND IN DESCRIBING YOUR OWN
WORK.
BUT SOME FRACTION WE RESERVE OR
INITIATIVES FOR IDEAS, FOR
RESEARCH OPPORTUNITIES THAT WE
IDENTIFY OFTEN WITH THE AID OF
INPUT FROM THE INTRAMURAL
COMMUNITY AND BASED ON
LITERATURE AND INPUT SO WE
CREATE SPECIFIC FUNDING
OPPORTUNITIES.
THOSE FUNDING OPPORTUNITIES AS
PRESENTED BACK IN JUNE CAN TAKE
A YEAR AND A HALF TO TWO YEARS
TO PRODUCE.
SO IF WE FIND A WONDERFUL
OPPORTUNITY FOR EXAMPLE,
DEVELOPING AN INNOVATIVE OR
CADRE FOR PEOPLE STUDYING
REHABILITATION SCIENCE, WHAT A
SHAME TO IDENTIFY THAT
OPPORTUNITY IN 2023 AND FUND THE
FIRST GRANT IN 2025.
THAT SEEMS RIDICULOUS.
THAT'S ONE THING WE'RE WORKING
ON.
ANOTHER WE'RE WORKING ON IS TO
R
RE-EXAMINE OUR ENTIRE TRAINING
INVESTMENT.
WE TRAIN PEOPLE IN FELLOWSHIP
AND THROUGH DIVERSITY
SUPPLEMENTS.
WE TRAIN PEOPLE EN MENTOR CAREER
AWARDS -- IN MENTOR CAREER
AWARDS AND HAVE A SPECTRUM OF
ACTIVITIES WE USE TO TRAIN THE
EXTRAMURAL WORKFORCE BUT WE
HAVEN'T REALLY EXAMINED IT
CAREFULLY AND SYSTEMATICALLY IN
EIGHT OR 10 YEARS.
WE'RE GOING TO DO IT AGAIN.
TO RECAP WHAT I SAID, WE'RE
WORKING ON A CONCEPT TO SPEED
THE DEVELOPMENT OF INITIATIVES
SO WE CAN BE MORE NIMBLE WHEN WE
FIND OPPORTUNITIES AND
SCIENTIFIC CHALLENGES AND
LAUNCHED A GROUP TO STUDY THE
NICHD EXTRAMURAL TRAINING
PROGRAM AND OVER THE NEXT YEAR
DEVELOP RECOMMENDATIONS TO BE
CONSIDERED BY YOU AND A CO-CHAIR
IS DR. CRUZ REPRESENTING THE
IMPORTANT SCIENCE NCMRR SUPPORTS
AND TRAINING IT SUPPORTS AS
WELL.
WE HAVE THE IDEA OF INNOVATION
OF BEING NIMBLE, OF RESPONSING
TO OPPORTUNITIES WHEN THEY ARISE
IS PART OF A DIFFERENT EFFORT
WE'D LIKE TO USE MORE FLEXIBLE
FUNDING MECHANISMS INCLUDING THE
OPAQUELY NAMED TRANSACTIONABLE
AUTHORITY AND IT'S MORE ACTING
LIKE A BUSINESS THAT INVESTS IN
OPPORTUNITIES AS THEY ARISE.
SO WE HIRED A TEAM LEAD IN OUR
GRANTS MANAGEMENT BRANCH.
SHE STARTED LESS THAN A MONTH
AGO.
SHE'S GOING TO HIRE A COUPLE
PEOPLE TO WORK WITH HER I WILL
HIRE A POLICY PERSON IN THE
COMING YEAR OR SO.
WE'LL HAVE AN ENTIRE PART OF THE
INSTITUTE GEARED TO FUNCTIONING
MORE LIKE A BUSINESS IN TERMS OF
TAKING ADVANTAGE OF
OPPORTUNITIES AND SUPPORTING
RESEARCH.
WHAT I TOLD YOU ABOUT IS SOME
KIND OF MUNDANE STUFF HOW WE'RE
RE-ORGANIZING THE EXTRAMURAL
PROGRAM OUR EFFORTS TO MAKE SURE
WE DISPERSE FUNDING IN A WAY
THAT ENCOURAGES A BROAD SWATH OF
RESEARCHERS TO CONTRIBUTE TO
ADVANCING RESEARCH.
I REMINDED YOU DATA SHARING IS
COMING IN SIX TO EIGHT WEEKS AS
A RETIREMENT -- REQUIREMENT AND
WE'RE BUILDING NEW CAPABILITY OF
FUNDING MECHANISMS.
WHAT I HAVEN'T HAD A CHANCE TO
TELL YOU ABOUT BUT WANT TO COME
BACK AND TALK TO YOU ABOUT IS
THAT WE'RE ALSO TAKING OPEN
CLOSET DOORS AND LOOKING AT ALL
KINDS OF THINGS WE'VE DONE IN A
STANDARD WAY FOR 10 OR MORE
YEARS AND TRYING TO SEE IF
THERE'S WAYS TO DO THEM BETTER
AND MORE EFFICIENTLY AND
EFFECTIVELY INCLUDING OUR
OVERSIGHT OF CLINICAL RESEARCH.
THAT'S ANOTHER MAJOR EFFORT
UNDERWAY AND MY PARTNER I HOPE
SHE AND/OR I CAN COME AND TELL
YOU MORE ABOUT THOSE EFFORTS IN
THE COMING MEETINGS OVER THE
NEXT YEAR OR SO.
SO THANK YOU VERY MUCH PLEASE
FEEL FREE TO REACH OUT TO ME IF
YOU EVER HAVE EXTRAMURAL
QUESTIONS AND I'M HAPPY TO
ANSWER SOME QUESTIONS NOW.
>> THANK YOU.
WE HAVE TIME FOR QUESTIONS.
I'D LIKE TO START -- CAN YOU
WILL TELL US MORE ABOUT THE
INITIAL THOUGHTS AS YOU THINK OF
RESTRUCTURING THE EXTRAMURAL
TRAINING PROGRAMS THAT YOU HAVE
IT'S A TOPIC THAT'S COME UP.
>> I WISH WE COULD SAY WE WERE
WELL ALONG AND HAVE
CONSIDERATIONS THAT ARE
PERCOLATING BUT I'D BE LAYING IF
I TOLD YOU THAT.
WE'RE JUST REALLY AT BEGINNING.
THE QUESTIONS THAT INTEREST US
VERY MUCH ARE VISIT OF ALL, HOW
DOES OUR TRAINING INVESTMENT
CORRESPOND TO OUR STRATEGY PLAN
STATEMENTS?
WE ARTICULATED OUR SCIENTIFIC
GOALS AND YOU ARTICULATE THE
GOALS FOR MCMRR.
IS THERE CORRESPONDENCE.
ARE WE INVESTING IN THE SAME
CAREER PATHS WE CONSIDERED TO BE
STRATEGICALLY IMPORTANT IN GAP
AREAS?
ARE TRAINING PROGRAMS EFFECTIVE?
IT'S EASY TO INVEST.
ANOTHER CRUCIAL QUESTION ARE WE
DRAWING FROM ENTIRE TALENT TOOL
OF THE UNITED STATES?
OR LIKE THE FUNDING SLIDE THEY
SHOWED YOU ARE WE CONTINUALLY
DRAWING FROM A FRACTION OF THE
TALENT POOL?
IF THAT'S THE CASE HOW CAN WE
CHANGE THAT?
THOSE ARE SOME OF THE IMPORTANT
QUESTIONS WE'LL BE LOOKING AT.
>> THANK YOU.
>> I HAVE A TON OF QUESTIONS BUT
I'LL STICK TO ONE QUESTION.
TO GET A SENSE OF AN EXAMPLE,
YOU MENTIONED CLOSING
ELIGIBILITY LOOPHOLES AS ONE
THING YOU'RE FOCUSSING ON.
I WANT TO BE CLEAR IF YOU CAN
PROVIDE AN EXAMPLE OF WHAT
YOU'RE MEANING BY THAT?
AND THE OTHER QUESTION IS I'M
ENCOURAGED BY THE START OF
NIMBLE FUNDING OPPORTUNITIES AND
WE THOUGHT ABOUT ARE RESEARCH
INFRASTRUCTURE AND GOT ME
THINKING OF FUNDING FOR THINGS
LIKE TEAM BUILDING.
THE FACT WE HAVE INVESTIGATORS
FROM MULTIPLE BACKGROUNDS AND
SOMETIMES WE DON'T KNOW EACH
OTHER VERY WELL AND FUNDING FOR
MATCH MAKING OF DIFFERENT
INVESTIGATORS TO DRAW ON
PRELIMINARY IDEAS OF HOW TO
BUILD A POTENTIAL COLLABORATION
FOR A TRADITIONAL R GRANT.
I DON'T KNOW IF THAT'S SOMETHING
OF CONSIDERATION OR LOW BAR OF
MECHANISM IN THAT REGARD?
>> THESE ARE EXCELLENT
QUESTIONS.
I DID SNEAK THE LOOPHOLE THING
IN THERE.
WHAT I MEANT BY THAT AND I THINK
OUR COUNCIL WAS RELATIVELY
RECEPTIVE TO THIS IS IT TURNS
OUT IF AN INVESTIGATOR WELL F
FUNDED SUBMITS AN APPLICATION
WITH WITHIN OR MORE OTHER
INVESTIGATORS.
SO WE HAVE THE WELL-FUNDED
INVESTIGATOR AND BE THE THEIR
CLOLLABORAT
COLLABORATOR.
THAT APPLICATION DOES NOT COME
UP FOR SPECIAL COUNCIL REVIEW.
IT TURNS OUT A SIGNIFICANT
FRACTION OF OUR WELL-FUNDED
INVESTIGA
INVESTIG
INVESTIGATOR APPLICATION
MULTIPLE INVESTIGATOR
APPLICATIONS AND BYPASS SPECIAL
COUNCIL REVIEW.
IN SOME COUNCIL ROUNDS IT'S LIKE
90% OF THEM.
THAT'S A LOOPHOLE THAT NEEDS
REEXAMINATION.
THAT'S TO YOUR FIRST QUESTION.
TO YOUR SECOND QUESTION, I'M
ALSO VERY EXCITE ABOUT NIMBLE
FUNDING.
I THINK IT'S A GREAT IDEA.
VARIOUS KINDS OF TARGETED
INVESTMENT.
I SHOULD SAY THOUGH I MYSELF AM
A SCIENTIST AND HAVE DISTINCT
INTERESTS IN MY DEA ROLE I SEE
MYSELF AS A FACILITATOR OF OTHER
PEOPLE'S IDEAS AND SCIENTIFIC
INTERESTS.
WHAT I REALLY HOPE IS THAT
YOU'LL BRING THESE IMPORTANT
IDEAS BACK TO THE BOARD HERE AND
DISCUSS THEM WITH YOUR
COLLEAGUES AND IF THIS IS
SOMETHING THAT THE INSTITUTE IS
TRYING TO DO TO SUPPORT TEAM
WORK AND IT IS AN INTERESTING
AND IMPORTANT IDEA UNDERSTANDING
WHAT MAKES A TEAM I'LL DO MY
BEST TO SUPPORT THAT WORK
>> THANK YOU.
NICE PRESENTATION.
THE FIRST COMMENT FOLLOWING THE
COST OF NIMBLE FUNDING, I
REMEMBER THE PROGRAM FUNDED BY
THE NATIONAL ACADEMIES
INITIATIVE WHERE THEY
ORGANIZATION EVERY YEAR MEETINGS
AND PILOT STUDIES THAT BROUGHT
PEOPLE FROM DIFFERENT AREAS THAT
DIDN'T WORK TOGETHER BEFORE.
THE SUCCESS HAS BEEN HUGE.
THIS IS RUN BY THE NATIONAL
ACAD
ACADEMIES.
MY SECOND COMMENT IS IN RELATION
TO THE VMS PLANS.
I UNDERSTAND IT WILL NOT BE PEER
REVIEWED.
HOW DO WE MAINTAIN QUALITY IF
THERE'S NO PEER REVIEW?
THERE'S DATA JOURNALS WHERE YOU
SUBMIT DESCRIPTORS AND IT'S PEER
REVIEWED OTHERWISE THE IT MAY
NOT SATISFY THE ULTIMATE GOAL.
THE QUALITY OF THE PLAN IS NOT
TO THE STANDARDS.
I WOULD LIKE TO HEAR YOUR
THOUGHTS ABOUT THAT.
AND IS THERE DATA ON HOW THE
PANDEMIC AFFECTED UNDER
REPRESENTED GROUPS FUNDED BY THE
INSTITUTE GIVEN THE HIGH
INCIDENCE OF LONG COVID.
THE FACT THAT WOMEN AND UNDER
REPRESENTED GROUPS HAVE BEEN
DISPROPORTIONATELY AFFECT THE
PANDEMIC AND IS THERE DATA AND
WHAT CAN THE INSTITUTE DO TO
ASSIST P.I.s OR POSTDOCS THAT
MAY BE AFFECTED BY THAT.
THANK YOU.
>> THANK YOU.
THANK YOU FOR THE INTERESTING
THOUGHTS AND QUESTIONS.
I WANT TO SAY YOU SPOKE TO MY
HEART ABOUT YOUR TALK OF PILOT
FUNDING.
IRONY WITH NIH WITH ITS VERY
LARGE BUDGET HAS ALWAYS BEEN
THAT IT'S ALMOST IMPOSSIBLE TO
SPEND SMALL AMOUNTS OF MONEY.
THE SYSTEM IS SO CUMBERSOME AND
SO SLOW THAT WE SAY THINGS SILLY
THINGS LIKE IT'S ONLY $25,000
WHICH SOUNDS PREPOSTEROUS FROM
ANY PERSPECTIVE OF BEING TOO
SMALL.
BUT BECAUSE IT'S SUCH A LARGE
AND CUMBERSOME SYSTEM, WE'VE
BEEN FORCED INTO GIVING REL
MATERIAL LARGE AMOUNTS OF
MONEY -- LARGE AMOUNTS OF MONEY.
YOUR QUESTION ABOUT THE ABILITY
TO GIVE SMALL OR PILOT FUNDING
IS SOMETHING WE LOOK FOR AND
HOPE WE CAN CONTINUE TO FIND
INNOVATIVE WAYS TO DO THAT.
I DID WANT TO SAY THOUGH I LOOK
FORWARD TO SEEING WHAT EMERGES
FROM THE SCIENTIFIC BRANCHES IN
THIS AREA.
MORE SPECIFICALLY TO YOUR
QUESTIONS ABOUT THE DATA
MANAGEMENT AND SHARING PLANS,
WE'VE SPENT AND ARE SPENDING A
TREMENDOUS AMOUNT OF TIME
EACHING OURSELVES AND DEVELOPING
WITHIN NIH ASSESSMENT TOOLS SO
WE CAN IN FACT ASSESS THE PLANS
RIGOROUSLY AND SCIENTIFICALLY
AND APPROPRIATELY AND MOST
IMPORTANTLY TO ENSURE THAT THE
PLANS ARE ACCESSIBLE.
YOU CAN'T MONITOR COMPLIANCE
WITH SOMETHING THAT DOESN'T HAVE
ANY METRICS OR ANYTHING TO
MONITOR.
SO WE WORKED A LOT ON THAT.
AND I WANTED TO SAY IN YOUR
CONVERSATIONS FROM NIH CENTRAL
ABOUT THIS AND SOME OF THEIR
POSITION PAPERS ON THE TOPIC
THAT THOUGH THE PEER REVIEWERS
ARE THE IDEAL PEOPLE TO ASSESS
PLANS, THE BURDEN OF PEER REVIEW
HAS BECOME SO HEAVY IN TERMS OF
THE NATIONAL OF VARIABLES THAT
NEED TO BE ASSESSED FOR ANY
APPLICATION, IT'S REALLY A
QUESTION WHETHER YOU CAN LAIR ON
THE ADDITIONAL REQUIREMENT AND
COME OUT WITH THE KIND OF
MEANINGFUL AND IMPORTANT RESULT
OF HAVING QUALITY PLANS THAT YOU
ARTICULATED.
WE'RE STARTING WITH DOING THE
PEER REVIEW WITH THE SCIENTIFIC
PEERS AT NIH, THE ADMINISTRATORS
AND WE'LL SEE HOW THAT BUT
YOU'LL SEE THE ASSESSMENT TOOLS
NIH HAS BEEN DEVELOPING ON THE
SHARING.NIH.gov WEBSITE.
AND TO YOUR POINT, I BELIEVE
MIKE LAUER POSTED RECENTLY SOME
DATA ABOUT APPLICATIONS IN HIS
OPEN BLOG DURING COVID 2020 AND
2021.
>> WE'LL MOVE TO THE NEXT
PRESENTER BUT DR. RASOOLY THANK
YOU AGAIN FOR YOUR COMMENTS AND
AN INSIGHTFUL PRESENTATION.
>> THANK YOU.
>> IT'S MY PLEASURE TO INTRODUCE
DR. WALTER FRONTERA PROFESSOR OF
PHYSICAL MEDICINE AND SPORTS
MEDICINE AT THE UNIVERSITY OF
PUERTO RICO.
HE'S THE PAST PRESIDENT OF
SOCIETY FOR PHYSICAL
REHABILITATION EDISON AND PART
OF THE AMERICAN ASSOCIATION FOR
THE ADVANCEMENT OF SCIENCE.
HIS INTERESTS SIN MUSCLE
DYSFUNCTION AND THE ELDERLY AND
THE BENEFITS OF EXERCISE
TRAINING.
HE HAS DONE WORK ON GLOBAL
HEALTH AND WORLD DISABILITY.
DR. FRONTERA.
>> THANK YOU FOR THE INVITATION.
CAN YOU HEAR ME AND SEE MY
SLIDES?
>> YES.
>> AGAIN, THANKS TO THE
INVITATION TO TALK TO YOU ABOUT
WHAT I CONSIDER TO BE
INTERESTING AND IMPORTANT TOPIC.
I THANK RAFFLE AND THE BOARD NOR
OPPORTUNITY TO DO THIS.
ONE MEMBER REFERRED TO THE ISSUE
OF IMPACT.
I'D LIKE TO START WITH THAT
CONCEPT.
THE QUESTION IS WHY IS THE
W.H.O. DEVELOPING A REHAB
PROGRAM.
WHAT DO THEY THINK IS THE IMPACT
OF THE WORK THEY DO.
THERE'S PERHAPS TWO ANSWERS TO
THAT.
THE FIRST WAS PUBLISHED BY THE
W.H.O. AND THE WORLD BANK IN
TWELVE.
YOU MAY REMEMBER THE WORLD
REPORT ON DISABILITY THAT
ESTIMATED THE NUMBER OF PEOPLE
IN THE WORLD LIVING WITH A
DISABILITY ABOUT 1 BILLION.
THAT WAS IN 2011.
LAST WEEK THE NUMBER WAS UPDATED
AND IT'S NOW 1.3 BILLION.
1 IN OF 6 PEOPLE GLOBALLY HAVE
DISABILITY.
THIS IS THE REPORT ON HEALTH
EQUITY WITH PERSONS FOR
DISABILITIES.
IT WAS OFFICIALLY RELEASED LAST
WEEK.
IT'S AVAILABLE ONLINE FOR THOSE
WHO MAY BE INTERESTED IN READING
THROUGH THE DETAILS.
THIS IS ONLY ONE NUMBER BUT
THERE'S A SECOND NUMBER SEEN
PUBLISHED IN 2020 IN THE JOURNAL
LANCET THIS WAS DONE BY THE
W.H.O. REHABILITATION PROGRAM
WITH THE INSTITUTE FOR HEALTH
METRICS AND EVALUATION AT THE
UNIVERSITY OF WASHINGTON.
I BELIEVE SOMEONE IN THE GROUP
IS HAVE THE UNIVERSITY OF
WINDSHIELD.
THIS SHOWED APPROXIMATELY 2.4
MILLION PEOPLE IN THE WORLD HAVE
HEALTH CONDITIONS THAT WOULD
BENEFIT FROM REHAB.
THIS UNDER INCLUDES NOT ONLY THE
1.3 BILLION PEOPLE LIVING WITH A
DISABILITY BUT OTHER INDIVIDUALS
WITH HEALTH CONDITIONS THAT CAN
BENEFIT FROM REHABILITATION THAT
HAVE CONDITIONS THAT MAY BE
TEMPORARY FOR EXAMPLE, IN FACT
THIS NUMBER, 2.4 BILLION
INCLUDES A LOT OF
MUSCULOSKELETAL CONDITION, IN
FACT THE LARGEST PERCENTAGE OF
PEOPLE IN THIS NUMBER ARE THESE
PEOPLE WITH THESE CONDITIONS AND
PAIN.
IF YOU PUT TOGETHER THE TWO
NUMBERS IT'S EVIDENT THAT
GLOBALLY THERE'S A TREMENDOUS
NEED FOR REHABILITATION SERVICES
AND REHABILITATION RESEARCH.
THE LAST COMMENT I WANT TO MAKE
IS THE IDEA THE W.H.O. COULD
MAKE IN 2023 A FORMAL
ANNOUNCEMENT THAT REHABILITATION
IN HEALTH SYSTEMS SHOULD HAVE A
SPECIAL PLACE THAT WE SHOULD BE
STRENGTHENING REHABILITATION IN
HEALTH SYSTEMS.
MANY COUNTRIES IN THE WORLD
FOLLOW THE ADVICE CLOSELY.
WHENEVER THE W.H.O. PUTS
TOGETHER THIS KIND OF STATEMENT
IT HAS MANY HEALTH MINISTRIES
AROUND THE WORLD.
THIS IS THE COPY OF THE
PROFESSIONAL AGENDA FOR THE
EXECUTIVE BOARD OF THE W.H.O.
THAT WILL BE MEETING IN GENEVA
AT THE END OF JANUARY, EARLY
FEBRUARY AND THIS IS ALREADY ON
THEIR AGENDA.
IF IT'S APPROVED BY THEM IT WILL
GO TO THE WORLD HEALTH ASSEMBLY
IN MAY AND PROBABLY GET APPROVAL
FROM THAT BODY.
THAT WILL TRIGGER A LOT OF
DISCUSSION AND POLICY REPORTS
AND SO ON WHICH IS WHY WE SHOULD
CONSIDER THIS AS AN IMPORTANT
ACTION TO STRENGTHEN
REHABILITATION GLOBALLY.
ONE IMPORTANT STEP THE W.H.O.
TOOK WHAT TO DEVELOP AN
INITIATIVE THAT IS CALLED
REHABILITATION 2030.
YOU CAN FIND MORE AT THE W.H.O.
WEBSITE.
THE VISION OF THE INITIATIVE IS
EVERYONE WHO NEEDS REHAB SHOULD
RECEIVE QUALITY SERVICE TO
OPTIMIZE AND MAINTAIN THEIR
FUNCTIONING IN EVERYDAY LIFE.
THERE'S A FEW THINGS THEY
HIGHLIGHTED AND I DON'T WANT TO
READ THE WHOLE TEXT BUT THE TEXT
I HIGHLIGHTED IN RED, GLOBALLY
ONE IN THREE PEOPLE LIVE WITH A
HEALTH CONDITION THAT BENEFITS
FROM REHAB.
TWO, MANY COUNTRIES ARE NOT
EQUIPPED TO RESPOND TO EXISTING
REHAB NEEDS NOT ONLY LOW AND
MIDDLE INCOME BUT HIGH INCOME
COUNTRIES.
NUMBER THREE, AT THAT POINT IN
TIME THEY DECIDED THE W.H.O. AND
MEMBER STATES AND MEMBER
PARTNERS AND CIVIL SOCIETY WOULD
COME TOGETHER TO LAUNCH THE
INITIATIVE.
AND THAT'S WHAT WE DID IN 2017.
THIS IS A PICTURE OF THE SECOND
MEETING OF THE GROUP IN 2019
WHERE MANY COUNT RIFZ THE WORLD
REPRESENTS AND MANY
INTERNATIONAL PROFESSIONAL
SOCIETIES WERE ALSO REPRESENTED.
SO CONSIDERING THAT OR HAVING
THAT IN MIND, THE BASIC IDEA WAS
THAT WE SHOULD ADVOCATE FOR
REHABILITATION TO BE AVAILABLE
FOR ALL THE POPULATION THROUGH
ALL STAGES OF THE LIFE COURSE.
PEDIATRIC THROUGH OLDER ADULTS.
THAT WAS MENTIONED THIS MORNING
AS ONE OF THE PRESENTATIONS.
NUMBER TWO, REHAB SHOULD BE
INTEGRATED IN ALL LEVELS OF
CARE.
THIS IS NOT ONLY AT THE LEVEL OF
HOSPITALS OR IN-EFFICIENT REHAB
FACILITIES, OUT-PATIENT
FACILITIES BUT AT THE LEVEL OF
THE COMMUNITY NUMBER THREE,
REHAB IS CRUCIAL FOR UNIVERSAL
HEALTH COVERAGE.
THIS IS AN IMPORTANT STATEMENT
BECAUSE ONE OF THE MAIN PROJECT
IDEAS AND OBJECTIVES OF THE
W.H.O. PLAN IS TO PROMOTE,
ENCOURAGE COUNTRIES TO DEVELOP
UNIVERSAL HEALTH COVERAGE
SYSTEMS.
PRIORITY AREAS WERE IDENTIFIED
AS PART OF THIS PROCESS AND I'LL
QUICKLY READ THEM TO YOU BUT YOU
CAN SEE THEM ON THE SLIDE.
NUMBER ONE, CREATE STRONG
LEADERSHIP AND POLITICAL SUPPORT
BECAUSE CLEARLY THIS IS NEEDED
SO THAT WE CAN CHANGE HEALTH
SYSTEMS AND HAVE THE SUPPORT OF
THE GOVERNMENTS IN THOSE
COUNTRIES.
NUMBER TWO, STRENGTHENING REHAB
PLANNING AND IMPLEMENTATION.
I'LL GET BACK TO THIS WHEN WE
TALK ABOUT THE REHAB ALLIANCE.
NUMBER THREE, IMPROVING
INTEGRATION OF REHAB IN THE
HEALTH SECTOR AND LINKS TO MEET
POPULATION NEEDS BECAUSE REHAB
SERVICES IN MANY COUNTRIES ARE
NOT ONLY TIED TO HEALTH SYSTEMS
BUT OTHER GOVERNMENTAL AGENCIES
PARTICIPATING IN THE DELIVERY OF
REHAB SERVICES.
NUMBER FOUR AS MENTIONED BEFORE,
IN COORDINATION OF HEALTH LEVELS
IF UNIVERSAL HEALTH COVERAGE IS
APPROVED BY' GOVERNMENT OF ANY
COUNTRY.
THERE'S A STATEMENT BY THE
W.H.O. SUPPORTING UNIVERSAL
HEALTH COVERAGE THAT INCLUDES
REHAB ALREADY AS PART OF THE
PLAN.
NUMBER 5, BUILDING REHAB SERVICE
DELIVERY MODELS WHICH IS AN
IMPORTANT CHALLENGE NOT ONLY
FROM A POLICY POINT OF VIEW BUT
ALSO FROM A RESEARCH POINT OF
VIEW.
NUMBER 6, A MULTI-DISCIPLINARY
REHAB WORKFORCE.
THIS IS WHERE THE ISSUE OF
TRAINING COMES INTO PLACE.
NUMBER 7, EXPANDING FINANCING
FOR REHAB THROUGH APPROPRIATE
MECHANISMS.
NUMBER 8, COLLECTING INFORMATION
RELEVANT TO REHAB AS PART OF
HEALTH INFORMATION SYSTEMS AND
THIS MAY BE OF INTEREST TO
NCMRR.
NUMBER 9, BUILDING RESEARCH
CAPACITY, EXPANDING THE
AVAILABILITY OF EVIDENCE FOR
REHAB THAT CAN BE USED TO
STRENGTHEN REHAB SERVICE.
NUMBER 10, ESTABLISH AND
STRENGTHEN PARTNERSHIPS IN REHAB
PARTICULARLY BUT NOT LIMITED TO
LOW, MIDDLE INCOME COUNTRIES AND
BETWEEN LOW, MIDDLE AND HIGH
INCOME COUNTRIES.
THESE ARE AMBITIOUS GOALS AND
PRIORITY AREAS BUT I THINK THEY
COVER EVERYTHING THAT WE COULD
POTENTIALLY THINK ABOUT WHEN WE
DISCUSS THE IDEA THAT WE SHOULD
HAVE A STRONGER PRESENTATION IN
HEALTH SYSTEMS AND IN MODERN
SOCIETIES.
IF YOU'RE INTERESTING, THEY'RE
AVAILABLE ONLINE ESPECIALLY THE
FIRST ONE, REHAB AND HEALTH
SYSTEMS AND A GUIDE DEVELOPED BY
THE REHAB PROGRAM AT THE W.H.O.
AND BEING USED BY HEALTH
MINISTERS ALL OVER THE WORLD TO
ADDRESS THE LACK OF REHAB
SERVICES IN MANY COUNTRIES.
I THINK YOU HAVE TO UNDERSTAND
IN MANY COUNTRIES THERE IS
SIMPLY NO SCHOOL FOR
OCCUPATIONAL THERAPY AND IN SOME
COUNTRIES NOT EVEN PHYSICAL
THERAPIES.
SO WORKFORCE ISSUES ARE REALLY
IMPORTANT.
RESEARCHERS IN REHAB ARE NOT
ACTIVE IN MANY COUNTRIES.
THEY'RE NOT AVAILABLE.
THEY'RE NOT PRESENCE IN MANY
COUNTRIES AS WELL.
ONE OF THE INITIATIVES OF REHAB
2030 IS WHAT WE'RE CALLING THE
WORLD REHAB ALLIANCE THAT WILL
DO ADVOCACY.
THIS IS THE MOST IMPORTANT TOPIC
AND A GLOBAL ALLIANCE OF
STAKEHOLDERS WITH A MISSION TO
SUPPORT IMPLEMENTATION OF 2030
THROUGH ADVOCACY.
IT'S ABOUT PROMOTING REHAB BUT
PROMOTING REHAB USING EVIDENCE
TO SUPPORT THE ADVOCACY EFFORTS.
THE ADVOCACY EFFORTS ARE BASED
ON THE IDEA THAT MORE THAN 20%
OF THE POPULATION OF THE WORLD
COULD POTENTIALLY BENEFIT FROM
REHABILITATION SERVICES AND
WOULD LIKE TO CONDUCT EVIDENCE
ADVOCACIES TO RAISE AWARENESS
AND NETWORK AND KNOWLEDGE
SHARING AND FOR CREATING A
SHARED UNDERSTANDING AND
NARRATIVE AROUND REHAB.
THE CONCEPT OF REHAB IS NOT
INTERPRETED IN THE SAME WAY IN
DIFFERENT PARTS OF THE WORLD.
THAT'S ONE OF THE IMPORTANT
CHALLENGES.
WE HAVE TO ALL COME TOGETHER TO
DO WHAT WE THINK SHOULD BE DONE
IN THIS AREA.
WHAT WILL THE WORLD REHAB
ALLIANCE MEAN TO DRIVE GLOBAL
EVIDENCE-BASED ADVOCACY FOR
REHAB?
YOU KNOW AS WELL AS I DO SOME
EVIDENCE IS SIMPLY NOT AVAILABLE
AND THAT'S WHY WE'RE TALKING
ABOUT THIS TODAY.
ANOTHER IMPORTANT OBJECTIVE IS
TO CREATE A SENSE OF BELONGING
AND PARTNERSHIP IN THE GLOBAL
REHAB COMMUNITY.
NOT ONLY RESEARCHERS AND
PROFESSIONALS BUT ALL
STAKEHOLDERS AND NUMBER THREE,
TO INTERACT WITH LOCAL, REGIONAL
AND INTERNATIONAL ORGANIZATIONS.
THEY'RE WORKING TOWARDS THE
COMMON GOAL BUT NOT TALKING TO
EACH OTHER.
WHO CAN PARTICIPATE AND WHO CAN
BECOME A PEM BER OF THE WORLD
REHAB ALLIANCE.
MOST ORGANIZATIONS DEDICATED
REHAB NOWADAYS THERE ARE CERTAIN
CRITERIA BECAUSE THEY HAVE TO
HAVE INTERNATIONAL IDEAS AND
HAVE TO HAVE A TRACK RECORD AND
THE GROUP COULD INCLUDE ACADEMIC
INSTITUTIONS, GOVERNMENTS, THE
PRIE
PRIVATE SECTOR AND NGOs AND
CIVIL SOCIETIES AND SO ON.
WE HAVE A PROCESS IN WHICH ALL
THE ENTITIES THAT ARE INTERESTED
APPLY FOR MEMBERSHIP IN THE ONE
ONE REHAB ALLIANCE AND BECOME
PART OF THE EFFORT.
NEEDLESS TO SAY THE MEMBERSHIP
IS FREE AND HAS TO DO WITH
COMMON OBJECTIVES AND NOT A
FINANCIAL CONTRIBUTION.
THE FIRST CYCLING OF THE WORLD
REHAB ALLIANCE WAS LAUNCHED IN
SEPTEMBER THIS YEAR, 2022 AND
WILL BE STARTING OFFICIALLY IN
FEBRUARY 2023.
SO WE'RE REALLY AT THE BEGINNING
OF THIS EFFORT, THIS PROCESS.
HOPEFULLY IT WILL CONTINUE
THROUGH 2030 BECAUSE THAT IS THE
END OF THE REHAB 2030
INITIATIVE.
THE WORK IS DIVIDED INTO FIVE
WORK STREAMS.
THE MEMBERS OF THE REHAB
ALLIANCE CAN CHOOSE WHICH WORK
STREAM THEY'D LIKE TO
COLLABORATE WITH.
WORKFORCE IS ONE OF THEM,
PRIMARY CARE, RESEARCH,
EMERGENCIES AND EXTERNAL
RELATIONS.
WE WOUL LIKE FOR THE WORK
STREAMS TO TALK TO EACH OTHER,
CLEARLY AND FOR THE RESEARCHER
TO HELP THE OTHERS MAKE A CASE
FOR STRONGER WORKFORCE FOR
EXAMPLE AND INCLUDING REHAP AT
THE PRIMARY CARE LEVEL AND SO
UPON THE MEMBERS OF THE REHAB
ALLIANCE CAN CHOOSE TO
PARTICIPATE IN ONE OR ALL OF
THESE WORK STREAMS.
TO GIVE YOU AN IDEA OF
LEADERSHIP AT THIS POINT IN TIME
THESE ARE THE CO-CHAIRS OF THE
FIVE WORK STREAMS REPRESENTING
DIFFERENT PARTS OF THE WORLD,
DIFFERENT PROFESSIONS AND SO ON.
THE 10 CO-CHAIRS COME TOGETHER
AS A STEERING COMMITTEE THAT
WILL WORK TOGETHER WITH THE
REHAB PROGRAM AT THE W.H.O.
THE SECRETARIAT.
IN THE WORKFORCE WE HAVE
REPRESENTATIVES FROM ISPRM AND
THE WORLD OCCUPATIONAL THERAPY
IN CARE AND INTERNATIONAL
ASSOCIATION OF COMMUNICATION
SCIENCES AND DISORDERS AND THE
UNIVERSITY OF TORONTO W.H.O.
COLLABORATING CENTER ON FAMILY
MEDICINE, RESEARCH MYSELF AND
WE'RE WAITING NOR HEALTH SYSTEMS
GLOBAL ENTITY TO APPOINT THE
CO-CHAIR OF THE RESEARCH WORK
STREAM AND IN THE CASE OF
EMERGENCIES, WE HAVE THE
INTERNATIONAL SPINAL CORT
SOCIETY AND INTERNAL BURNS AND
THE EXTERNAL RELATION THE WORLD
VIS YO THERAP -- PHYSIO THERAPY
AND BRINGING THOSE WHO REPRESENT
DIFFERENT INTERESTS AND AT THE
SAME TIME DIFFERENT PROFESSIONS
IN THE REHAB WORLD.
IN TERMS OF THE RESEARCH WORK WE
WANT TO FOCUS ON HEALTH POLICY
AND SYSTEMS RESEARCH.
THIS IS A FIELD THE DEFINITION
WE'RE FOLLOWING, IN ACHIEVING
COLLECTIVE HEALTH CODES AND HOW
DIFFERENT ACTORS INTERACTING IN
THE POLICY AND IMPLEMENTATION
PROCESS TO CONTRIBUTE TO POLICY
OUTCOMES.
WE'RE TALKING ABOUT HEALTH
POLICY AND SYSTEM RESEARCH FOR
REHABILITATION LIMITING THE
DISCUSSION TO THE PARTICULAR
AREA THAT IS OF OUR INTEREST.
EVIDENCE THAT FOCUSES ON MODELS
OF CARE AND CLINICAL PRACTICE
GUIDELINES AND BURDEN OF DISEASE
IS USEFUL TO INFORM DECISION
MAKING IN THE ARENA.
THE IDEA IS NOT TO REPLACE OTHER
TYPES OF REHAB.
EVIDENCE IS TO COMPLIMENT
EVERYTHING ELSE BEING DONE IN
THE RESEARCH REHAB WORLD.
GLOBALLY WE HAVE A CONCERN
POLICY AND DECISION MAKERS WE
WANT THEM TO PUSH FOR
REHABILITATION IN HEALTH
SYSTEMS, THEY WANT KNOW HOW BEST
TO ORGANIZE THE HEALTH SYSTEM
BUT THE EVIDENCE TO SUPPORT
THEIR DECISIONS IS NOT COMPLETE.
IT'S NOT AVAILABLE IN SOME
CASES.
THERE'S A LACK OF FUNDING TO THE
TO SUPPORT THIS KIND OF
RESEARCH.
YOU KNOW THAT AS WELL AS I DO.
IN SOME CASES THERE MAY BE
FUNDING BUT LIMITED RESEARCH
CAPACITY TO CONDUCT THE IN SOME
AREAS SOME COUNTRIES AND SO ON
AND SOMETIMES LIMITED DEMAND AND
CAPACITY TO UTILIZE THE EVIDENCE
WHICH IS A CONCERN FOR US.
IT MAY BE THAT POLICY MAKERS DO
NOT KNOW WHERE TO LOOK FOR THAT
EVIDENCE ARE NOT AWARE THE
EVIDENCE MAY EXIST AND ARE NOT
TALKING TO THE RIGHT PEOPLE WHEN
THEY'RE MAKING DECISIONS.
IF WE DON'T PROVIDE THE EVIDENCE
WHICH IS THE POINT WE'RE TRYING
TO MAKE, IF WE DO NOT PROVIDE
THAT EVIDENCE, REHAB WILL BE
EXCLUDED IN THE POLICY FOR
HEALTH SERVICES IN THE SECTOR.
THEY'LL SIMPLY SAY THERE'S NO
EVIDENCE WE CAN STRENGTH HEALTH
SYSTEMS BY INCLUDING
REHABILITATION SERVICES.
WE WILL CONTINUE WITH THE MISS
MATCH I MENTIONED BEFORE BETWEEN
THE NEED AND SIGNIFICANT NEED
FOR REHAB SERVICES AND THE
AVAILABILITY OF THE SERVICES.
IN RESPONSE TO THE COMMENTS WE
THINK IS A REALITY THE LICENSE
THINKS OF THE FOLLOWING LINES
AND THIS IS A WORK IN PROGRESS.
THESE ARE THICKS WE ARE IN THE
PROCESS OF FINALIZING.
IF YOU'D LIKE TO PROVIDE INPUT
IT'S MORE THAN WELCOME.
THE RESEARCH WORK STREAM IS
ROUTINELY USED WITH HEALTH
POLICY AND EVIDENCE FOR PLANNING
IN THE RESEARCH SECTOR.
IT'S NOT AN EXCEPTION.
WE WANT THIS TO BE THE RULE WHEN
DECISION MAKERS AND POLICY
MAKERS ARE STRUCTURING THEY ASK
AND USE THE AVAILABLE EVIDENCE
THAT RESEARCHERS PRODUCE.
SO ACCOMPLISH THE GOAL WE WOULD
LIKE TO IN THE NEXT TWO YEARS DO
THE FOLLOWING THREE THINGS,
INCREASE DEMAND AND UTILIZATION
OF EXISTING EVIDENCE FOR
REHABILITATION.
AGAIN, LIMITING HEALTH POLICY
FOR REHABILITATION.
MAKE SHOWER THOSE INVOLVED IN
THE DECISION MAKING PROCESSES
HAVE ACCESS TO THE EVIDENCE.
INCREASED GENERATION OF EVIDENCE
AND THIS MEANS MORE FUNDING FOR
RESEARCH AND ENCOURAGE RESEARCH
IN THE AREA.
THREE, PROMOTE THE PUBLICATION
AND DISSEMINATION OF EVIDENCE
FOR REHABILITATION.
WE HAVE TO GET THE ACADEMIC
JOURNALS BY PUBLISHING PAPERS IN
THIS ARENA.
FOR EXAMPLE, SUPPLEMENTS IN THE
TOPIC INCLUDING PEOPLE WITH
EXPERTISE IN THE AREA ON THE
EDITORIAL BOARDS OF THE JOURNALS
AND SO ON.
AND FOR MODELLING AND PLANNING
AND REHABILITATION IN THE HEALTH
SECTOR.
DECISION MAKERS ARE REQUIRED TO
ASK FOR AND USE BEST AVAILABLE
EVIDENCE AND HAVE TO EDUCATE THE
POLICY MAKERS.
THIS IS AN IMPORTANT MESSAGE BUT
WE WANT TO DELIVER THE MESSAGE
WITH EVIDENCE IN HAND.
SUPPORTING AVAILABILITY OF REHAB
HEALTH SYSTEMS REQUIRES
RESEARCHERS AND PARTNERSHIPS AND
METRICS.
ALL THESE NEED TO BE RELEVANT TO
STRENGTHENING REHABILITATION AND
HEALTH SYSTEMS AND TIMING.
WHEN I LOOK AT THE RESEARCH
PORTFOLIO IN THE WEBSITE I CAN
OBVIOUSLY SEE AREAS THAT OVERLAP
SIGNIFICANTLY WITH WHAT THE
WORLD REHAB ALLIANCE IS TALKING
ABOUT.
THIS ONE IS AN OBVIOUS OVERLAP
THE HEALTH SERVICES RESEARCH
COMPONENT OF THE PROGRAM AREAS.
THESE WE DISCUSSED AT THE LAST
MEETING AT THE W.H.O. MEETING
AND THIS IS PART OF THE
UNIVERSAL HEALTH COVERAGE IDEA
THE W.H.O. HAS BEEN PROMOTING.
BECAUSE THIS IS AN EXCELLENT WAY
OF DELIVERING REHAB IN LOW AND
MIDDLE INCOME COUNTRIES THAT MAY
NOT HAVE MORE SOPHISTICATED
INFRASTRUCTURE.
AND LONG-TERM HEALTH
CONSEQUENCES AND ECONOMIC
ANALYSIS AND EFFECT OF REHAB
INTERVENTIONS.
THIS IS WHAT DECISION MAKERS AND
POLICY MAKERS IN MANY COUNTRIES
WORRY ABOUT.
AND TO PARTNER WITH THE W.H.R.
CLAB COLLABORATE AND THEY MAY
REQUIRE MORE DETAILED DISCUSSION
ON THE BEST WAY TO DO THIS AND
HOW TO DO IT BUT I THOUGHT I'D
PROVOKE DISCUSSION BY SUGGESTING
THERE IS AN OPPORTUNITY FOR THE
BOARD TO COLLABORATE DIRECTLY OR
SUPPORT THE W.H.R. VISION AND
MISSION IN AREAS OF NEUTRAL
INTEREST.
NUMBER TWO, THAT THIS MAY BE AN
OPPORTUNITY TO CONDUCT RESEARCH
AT THE INTERNATIONAL LEVEL SO WE
CAN HAVE A HIGHER IMPACT NOT
ONLY ON WHAT WE DO IN THE
U.S. BUT ACROSS THE WORLD
INFLUENCING THE DEVELOPMENT OF
HEALTH SYSTEMS IN THE FUTURE.
AND MORE COMPATIBLE WITH POLICY
QUESTIONS AND HEALTH CARE
SETTINGS FOR VARIOUS
POPULATIONS, WHERE IS REHAB
EFFECTIVE AND COST SUFFICIENT.
DATA AND FUNCTIONING AND
ELECTRONIC INFORMATION SYSTEMS,
ADOPTION OF TECHNOLOGY IN
LOW-INCOME COUNTRIES AND SO ON.
I'M SURE YOU CAN COME UP WITH A
LONGER LIST BUT I THOUGHT I'D
MENTION A FEW THAT COULD
POTENTIALLY BE INITIATIVES FOR
COLLABORATION.
I WANT TO THANK YOU AGAIN FOR
THE OPPORTUNITY TO ADDRESS THIS
TOPIC WITH YOU TO EXPLAIN WHAT
IS HAPPENING AT THE W.H.O.
LEVEL.
AND AT THE WORLD REHAB ALLIANCE
BECAUSE OF THE WORK STREAM
COMPONENT.
I HOPE THIS HAS BEEN INFORMATIVE
AND LEAD TO INTERESTING
COLLABORATIONS BETWEEN THE BOARD
AND W.H.O.
I'LL STOP HERE AND SEE WHETHER
THERE'S ANY QUESTIONS AND
FEEDBACK THAT YOU MAY WANT TO
GIVE US AS WE DEVELOP THIS
PROJECT FURTHER.
>> DR. FRONTEA.
THANK YOU FOR THE.
MENTIONED THE 2030 INITIATIVE
AND MENTIONED UNIVERSAL HEALTH
CARE AND REHABILITATION AND YOU
SPOKE OF PRIMARY CARE.
ALL OF THESE CENTER AROUND RURAL
HEALTH CARE AND REHABILITATION
AND BELIEVE IN SOCIETIES WITH
ACCESS TO ALMOST EVERY
LIFESTYLE.
AT THE SAME TIME WE DON'T SEE
ENOUGH RESEARCH BASED ON DATA
FROM THE RURAL AREAS.
THE OTHER THING IS THERE'S THE
GIRTH OF HEALTH PROFESSIONALS IN
RURAL AREAS.
IN SOME COUNTRIES THEY ARE AND
WITH EXPERTISE IN ALMOST ALL THE
REHABILITATION AREAS AND BECOMES
THE PRIMARY CARE PROVIDER
ESPECIALLY IN THE RURAL AREAS
AND PROVIDING REHABILITATION
SERVICE TO THOSE WHO NEED IT IN
THE AREA AND DATA THAT COULD
INFORM BETTER PRACTICES IN THE
FUTURE.
>> YOU'RE QUESTION IS SO
IMPORTANT.
AND IT MAKES ME THINK YOU WERE
PART OF THE DISCUSSIONS.
THE IDEA OF UNIVERSAL HEALTH
COVERAGE IS A BIG IDEA.
EVERYBODY SHOULD HAVE ACCESS TO
HEALTH SERVICES AND SO ON.
AND THE IDEA THAT UNIVERSAL
HEALTH COVERAGE MUST INCLUDE
REHABILITATION AND WE CAN'T
PROVIDE COVERAGE IF WE DON'T
PROVIDE REHABILITATION.
THE ISSUE IS HOW DO WE PROVIDE
THAT AND WHERE.
IN SOPHISTICATED ACADEMIC
MEDICAL CENTERS AND THE ANSWER
IS IT'S NOT POSSIBLE.
IT'S NOT POSSIBLE IN MANY
COUNTRIES AND EVEN THE WAY TO DO
IT.
AND WHAT IS PRESENT IN MANY
COUNTRIES THAT HAVE NO ACCESS TO
REHABILITATION SERVICES BUT MAY
HAVE ACCESS TO OTHER SERVICES.
THAT'S WHY THE ISSUE OF
CONNECTING REHAB TO PRIMARY
CARE.
WE CANNOT DEFEND ON REHAB
PROFESSIONALS BECAUSE THEY DO
NOT EXIST IN MANY COUNTRIES OR
HAVE FEW REHAB PROFESSIONALS AND
THEREFORE NOT AVAILABLE TO GO TO
COMMUNITIES THAT ARE FAR FROM
THE CAPITAL CITY AND SO ON.
THERE'S A PROFESSIONAL THAT HAS
A SET OF SKILLS THAT COVERS
PRIMARY LEVEL REHAB IS USEFUL
AND I THINK THAT'S THE IDEA IN
THE COUNTRY.
WE NEED TO THEN DO THIS WITH
EVIDENCE.
WHERE IS THE EVIDENCE WE CAN
DELIVER THAT REHAB CARE IN THOSE
SETTINGS AND WHAT IS THE BEST
WAY TO DO IT?
WE CAN DO THOSE IN A HOSPITAL
WITH OUT PATIENT CLINICS.
CAN WE DELIVER AND TECHNOLOGY
THAT IS USEFUL FOR THOSE WHAT
CAN AFFORD IT AND THOSE WHO LIVE
IN LOW-INCOME COUNTRIES MAY NOT
HAVE ACCESS TO THE TECHNOLOGY.
CAN WE DELIVER IT IN A DIFFERENT
WAY IN THAT LEVEL OR WHERE IS
THE EVIDENCE TO DO THAT?
THAT'S WHY I'M SUGGESTING
THERE'S AN OPPORTUNITY TO EXPAND
OUR RESEARCH TO SETTINGS THAT
WILL CHALLENGE OUR ASSUMPTIONS.
AND NEED TO COLLECT DATA THIS IS
THE WAY TO SHOW GOVERNMENTS THEY
SHOULD BE INVESTING IN EXPANDING
THE REHAB SERVICES.
I AGREE WITH YOUR LINE OF
THINKING.
>> THANK YOU VERY MUCH.
VERY HELPFUL.
THANK YOU FOR OPENING OUR EYE TO
THE CRITICAL PROBLEM AND THE
WORK BEING DONE AT SUCH A GLOBAL
SCALE THE MAJORITY OF CONDITIONS
ARE MUSCULOSKELETAL IN ORIGIN.
THE QUESTIONS THAT WERE BEING
ADDRESSED JUST NOW TO DELIVER
THE CARE AND HOW TO DO THE
TRAINING.
I'D LIKE TO ASK ABOUT THE WHAT
AND NECK PAIN AND RHEUMATOID
ARTHRITIS, AMPUTATION, CEREBRAL
PALSY, TRAUMATIC BRAIN INJURY,
IF WE WERE TO TALK ABOUT IT AS A
SYSTEM WHERE YOU HAVE
INDIVIDUALS DELIVERING CARE ON
THOSE PARTICULAR WHICH WOULD YOU
PICK IN THE SHORT TERM TO GET US
STARTED?
>> THANK YOU FOR THE QUESTION.
AND WE CAN DEVELOP PACKAGES OF
INTERVENTIONS.
THESE ARE BASIC RECOMMENDATIONS
FOR THE REHABILITATION OF SOME
OF THE MOST IMPORTANT CONDITIONS
LIKE STROKE, AGING, SARCOPENIA
AND SO ON, AMPUTATIONS AND SO
ON.
THE PACKAGES OF INTERVENTIONS
ARE EVIDENCE BASED.
THE PROCESS REQUIRES WE BRING
TOGETHER A COMMITTEE TO GO
THROUGH THE LITERATURE AND
DEVELOP BASIC RECOMMENDATIONS
AND WHEN I SAY BASIC, I MEAN
THINGS THAT CAN BE DONE IN ANY
COUNTRY.
NOT HIGHLY SOPHISTICATED
PROSTHETIC DEVICES THAT REQUIRE
A LOT OF TECHNOLOGY AND SO ON.
I'M TALKING ABOUT INTERVENTIONS
THAT CAN BE IMPLEMENTED IN
FRANCE, MALAYSIA, PUERTO RICO,
BRAZIL AND SO ON, ANYWHERE.
SO THAT EFFORT WILL LEAD TO THE
DESCRIPTION OF WHAT SHOULD WE BE
OFFERING THESE PATIENTS.
NOT HOW OR WHAT BUT WHAT DO WE
NEED AVAILABLE IN THE REHAB
CLINICS AND PRIMARY CARE CLINICS
FOR THE PATIENT TO BENEFIT FROM.
THAT'S NUMBER ONE.
THE DELIVERY ISSUE RAISES
ANOTHER PROBLEM.
WE BELIEVE IN SOME COUNTRIES THE
DELIVERY WILL HAVE TO BE DONE
AND THE PRIMARY CARE NETWORK
WILL NEED TO BE DONE AND BELIEVE
THE INTERVENTIONS CAN BE
DELIVERED VIA TELEMEDICINE.
SOME ARE EDUCATIONAL IN NATURE
AND CAN BE DELIVERED VIA
TELEMEDICINE.
THAT WILL DEPEND ON THE
INFRASTRUCTURE OF THE COUNTRY.
YOU'LL SEE THERE WILL BE
VARIABILITY IN TERMS OF HOW WE
DELIVER THE INTERVENTIONS BASED
ON THE REALITY OF THAT COUNTRY.
THE IDEA OF THE BASIC PACKAGE OF
INTERVENTION IS SAYING THE LEAST
YOU CAN DO IS THIS.
SO TO SOME DEGREE THE PACKAGE IS
MINIMAL.
PERHAP NOT OPTIMAL BUT MINIMAL
WE SHOULD BE DOING FOR THESE
PATIENTS IN DIFFERENT PARTS OF
THE WORLD.
>> THE GREAT THING IS IT'S BEING
IDENTIFIED.
THAT'S VERY USEFUL.
THANK YOU FOR THAT.
FINALLY THEY GET PUBLISHED.
IT'S EVIDENCE BASED.
MY MESSAGE IS THAT WE NEED MORE
OF THAT EVIDENCE SO WE CAN ARE
ARGUE THAT THESE INTERVENTIONS
HAVE TO BE DELIVERED.
AND HOW AND THIS IS PART OF THE
POLICY AND SYSTEMS RESEARCH.
TERESA.
>> THANK YOU, WALTER FOR THAT
PRESENTATION.
I THINK IT'S A TOPIC THAT'S BEST
DELIVERED BY THE PEOPLE ON THE
GROUND DOING THAT WORK AND WORK
STREAM.
I WANTED TO LET PEOPLE KNOW
WHERE NCMRR FITS IN AND THERE
WERE THE INITIAL DISCUSSIONS IN
AGAIN EVA AND INDIA TO LAUNCH
THAT PROGRAM.
YOU MAY REMEMBER THERE WAS A BIT
OF A LULL IN THE U.S.'S
INTERACTIONS WITH THE W.H.O.
THE BARRIERS HAVE COME DOWN IN
THE CHANGE OF ADMINISTRATION AND
IN THE LAST 18 MONTHS JOE AND I
AND LANA HAVE BEEN MEETING WITH
THE REHAB SECTION OF W.H.O.
EVERY FEW MONTHS AND HAVE BEEN
ABLE TO SUPPLEMENT AND AWARD A
GRANT TO W.H.O. TO SOME OF THE
THINGS THAT WALTER HAS
HIGHLIGHTED HERE THAT ARE GOING
BEFORE THE ASSEMBLY FOR
CONSIDERATION.
SO WE ARE SUPPORTING THE
DEVELOPMENT OF OPEN-SOURCE
WEB-BASED TOOLS TO DELIVER THOSE
EVIDENCE-BASED PRIORITY PACKAGE
OF INTERVENTIONS THEY WORKED SO
HARD TO ASSEMBLE.
WE ARE HELPING THEM DEVELOP
INDICATORS OF DISABILITY SO WE
CAN TRACK HOW MANY BEDS ARE
THERE AND WHO IS RECEIVING CARE
SO WE CAN TELL WHETHER THESE
INTERVENTIONS ARE WORKING IN THE
HEALTH SYSTEM.
I HAVE TO TELL YOU, HEALTH
SYSTEM RESEARCHERS ARE NOT WHAT
I WAS TRAINED ON IN A VERY
DIFFERENT ANIMAL.
WE HAVE TO BE CAREFUL.
WE DON'T DO ADVOCACY BUT I'M
TRYING TO GET US INTO THE W.R.A.
ROOM SO WE CAN AT LEAST BE AWARE
OF WHAT CONVERSATIONS ARE
HAPPENING AND SEE WHAT RESEARCH
THAT DOES FIT WITHIN NIH'S
MISSION WE CAN BE SUPPORTIVE OF
THIS.
STAY TUNED.
STILL WORKING ON SOME THINGS BUT
THANK YOU WALTER, FOR THAT
PRESENTATION.
>> HAPPY TO BE HERE.
I WANT TO SAY TWO THINGS.
OF COURSE, NCMRR IS NOT AN
ADVOCACY GROUP BUT IT IS A GROUP
THAT WILL PRODUCE THE EVIDENCE
THAT WE CAN THEN USE TO ADVOCATE
FOR STRONGER HEALTH SYSTEMS
INCLUDING REHABILITATION.
I HAVE TO ADMIT TO THE GROUP
THAT I DO HAVE A LITTLE BIT OF A
CONFLICT IN THE SENSE OF WHEN I
TALK TO THE GROUP BECAUSE I WAS
A MEMBER OF THE NHCID COUNCIL
AND I WOULD BE HAPPY TO CONTINUE
TO SEE NCMRR STRONGLY SUPPORT
THE INITIATIVE.
THANK YOU FOR THE OPPORTUNITY.
>> THANK YOU WALTER WITH YOUR
THOUGHTS AND PRESENTATION.
WITH THAT BACK TO RALPH WHO WILL
LEAD OUR VOTING.
>> I ALSO WANTED TO THANK WALTER
FOR HIS LEADERSHIP OVER THE
YEARS IN THESE DOMAINS.
IT ALWAYS GETS INTERESTING AS
YOU GET INTO OTHER CULTURES AND
OTHER COUNTRIES WHAT'S EVEN
CONSIDERED A DISABILITY AND WHAT
IS THE RESPONSIBILITY OF THE
FAMILY AND THE COMMUNITY OR EVEN
THE STATE IN THEIR SUPPORT.
VERY INTERESTING QUESTIONS AND
VERY INTERESTING CHALLENGES EVEN
WITHIN OUR OWN RESEARCH CULTURE
TO ADDRESS THE ISSUES.
>> THANK YOU, GREAT TO SEE YOU
AGAIN.
I WANTED TO COME BACK TO THE
ISSUE ABOUT THE ELECTION FOR THE
NEXT BOARD CHAIR.
OUR CONTRACTORS ARE SETTING UP
THE VOTING SHEETS AND AS WE
DISCUSSED YOU HAVE THREE
OPTIONS.
YOUR VOTES WILL REMAIN PRIVATE.
THE TOTALS WILL REMAIN PRIVATE
AND BE NOTIFIED OF THE VICTOR.
I WOULD LIKE EACH OF THE BOARD
MEMBERS TO PLACE THEIR VOTES NOW
AND WE'LL SEE HOW THEALLIES END
UP.
>> WE HAVE 10 WHO RESPONDED AND
ONE VIA CHAT EARLIER SO 11.
IF THAT IS GOOD WE CAN END IT.
IF MORE NEED TO COME IN.
>> SINCE IT'S IMPORTANT WE'LL
GIVE PEOPLE 10 MORE SECONDS TO
FINISH THEIR VOTES.
I CAN'T QUITE HUM THE THEME SONG
BUT I'LL GIVE PEOPLE TIME TO PUT
IN THEIR VOTES SO WE DO SURVEY
EVERYBODY.
OKAY.
CAN YOU TELL US WHO THE VICTOR
IS?
SO LOOKS LIKE BARBARA IS OUR NEW
BOARD CHAIR.
YOU'LL GET AROUND THE CLOCK
PROTECTION AND FREE E-MAIL
SERVICES.
WE APPRECIATE ALL THREE OF YOU
IT WAS GREAT TO HAVE PEOPLE'S
SUPPORT FOR THE SYSTEM AND GREAT
TO CONTINUE AHEAD.
WITH THAT I'LL PASS IT BACK TO
ERIC AND WE'LL GET A BIT OF A
BREAK AND WE STILL HAVE A COUPLE
INTERESTING -- ONE MORE
INTERESTING TALK FOR THE
AFTERNOON.
JEREME WILROY WILL TALK ABOUT
TELEREHABILITATION AND
RESPECTING TIME AND PLACE.
>> WE'LL ALSO THINK OF WHAT
TOPICS YOU WANT TO HAVE FOR THE
NEXT ADVISORY MEETINGS THE NEXT
AGENDA ITEMS BECAUSE THAT WILL
BE THE FINAL DISCUSSION ITEM.
SO WE'LL TAKE A BREAK, PLEASE
STAY CONNECTED, IF YOU CAN.
AND WE'LL MEET AGAIN AT 1:00
P.M. EASTERN STANDARD TIME.
>> WE HAVE A PRESENTATION FROM
JEREME WILROY AND THIS IS
SOMETHING THE BOARD SAID THEY'RE
INTERESTED IN HEARING MORE
BECAUSE OF REHAB IN GENERAL AND
HE'S AN ASSISTANT PROFESSOR FROM
UAB BIRMINGHAM AND PROJECT
CO-DIRECTOR FOR THE UAB SPINAL
CORD INJURY SYSTEM AND IS A
REHAB ACTIVITY FOR PEOPLE WITH
DISABILITIES.
WE'RE LOOKING FORWARD TO YOUR
TALK.
THANK YOU FOR TAKING THE TIME TO
BE WITH US TODAY.
>> THANK YOU FOR THE
INTRODUCTION.
CAN YOU SEE MY SCREEN?
>> YES.
>> I'LL MINIMIZE THIS.
THANK YOU SO MUCH FOR THAT
INTRODUCTION AND TODAY I WANT TO
PRESENT ON A TOPIC THAT IS
MEANINGFUL TO ME BOTH
PROFESSIONALLY AND PERSONALLY
WHICH IS ON HOW REHABILITATION
CAN BENEFIT FROM THE USE OF
TECHNOLOGY AND IMPROVING THE
LIVES OF INDIVIDUALS WITH
DISABILITIES.
SO A FEW POINTS I WANT TO TOUCH
ON IS TECHNOLOGY IS CONVENIENT,
SHINY AND ATTRACTIVE.
HOW DO WE LEVERAGE TECHNOLOGY'S
USEFULNESS AND AVOID RELIANCE ON
IT.
THE GOAL IS TO GENERATE
DISCUSSION ON HOW REHABILITATION
CAN BE LEVERAGED TO IMPROVE THE
LIVES OF INDIVIDUALS WITH
DISABILITIES.
I WANT TO PRESENT ON BACKGROUND
ON THE FIELD OF REHABILITATION
AND WHAT HAS LED US TO THIS
POINT OF USING TECHNOLOGY.
SOME PROGRAMS THAT HAVE BEEN
DEVELOPED AND IMPROVED AND
FUNCTIONING WITH PEOPLE WITH
DISABILITIES.
WHAT ARE SOME OF THE BENEFITS
AND CHALLENGES THAT WE HAVE
ENCOUNTERED IN DEVELOPING THE
PROGRAMS AND DELIVERING THEM AND
WHERE WE ARE NOW AND WHERE WE
NEED TO GO.
MY HOPE TO PRESENT IS ON SOME
THOUGHTS ON WHY
TELEREHABILITATION SHOULD BE
PRIORITIZED.
BEFORE I BEGIN I WANT TO SHARE
HOW IT IMPACTED MY LIFE.
IN 2005 I WAS IN A TRAGIC
INCIDENT THAT LEFT ME PARALYZED
FROM THE CHEST DOWN AND RECEIVED
A SPINAL CORD INJURY AND THANKS
TO THE PHYSICAL AND OCCUPATIONAL
THERAPIST AND REHABILITATION
PROCESS I WENT FROM THE STATE IN
LYING IN BED TO SIT UP AND GET
IN AND TRANSFER TO MY WHEELCHAIR
TO BEGIN TO MOBILIZE MY BODY
AGAIN AND OVER THE LIFE LONG
JOURNEY CONTINUE TO PROGRESS AND
FUNCTIONING TO GO ON TO COLLEGE
AND SPORTS AND START A FAMILY,
GET A DEGREE, START A CAREER AND
SO I OWE A LOT TO THE FIELD OF
REHABILITATION NOW I'VE HAD THE
OPPORTUNITY TO START TO GIVE
BACK TO THE FIELD TO DEVELOP
PROGRAMS TO HELP INDIVIDUALS
KIND OF TO BE ABLE TO
REHABILITATE IN THE SAME WAY OR
IN SIMILAR WAYS I HAVE BEEN ABLE
TO SO THEY CAN INCREASE THEIR
PARTICIPATION IN LIFE WHETHER
THAT IS EMPLOYMENT OR FAMILY OR
IN THEIR COMMUNITY OR WHATEVER
THEY DESIRE TO DO.
SO AS A DISCLAIMER, IF I STUMBLE
OVER SOME OF MY WORDS TODAY, MY
1-YEAR-OLD HAD ME UP IN THE
MIDDLE OF THE NIGHT LAST NIGHT
SO PLEASE EXCUSE THAT.
FUN FACT OF WHERE I AM
PRESENTING FROM.
RIGHT NOW I AM AT LAKE SHORE
FOUNDATION IN BIRMINGHAM,
ALABAMA.
I'M WITHIN THE TELEHEALTH CENTER
ADDED ON AT LAKE SHORE.
IT WAS COMPLETED IN THE SPRING
OF 2019.
I'VE RECENTLY STEPPED ON AS
DIRECTOR OF RESEARCH AT LAKE
SHORE AND A LOT OF THE PROGRAMS
USE THE SPACE.
THERE'S AN EXERCISE AND
NUTRITION LAB EQUIPPED WITH
CAMERAS TO BE ABLE TO BROADCAST
OUT PROGRAMS OR TO CREATE ONLINE
RESOURCES AND THERE'S ALSO SOME
TELESUITE ROOMS ONE I'M LOCATED
IN FOR WHICH WE USE LIVE
EXERCISE DEMONSTRATIONS AND
TELECOACHING.
WE'RE LOOKING TO ENHANCE THE
SPACE IN THE COMING MONTHS FOR
IMPROVING LAKE SHORE'S ABILITY
TO TRAIN ELITE ATHLETE AND
TRANSLATE SUPPORTS SCIENCE
RESEARCH.
I BELIEVE HIGHLIGHTING
INDIVIDUALS WITH DISABILITIES
THROUGH SPORT IS ONE WAY OF
ELEVATING DISABILITY AND
BRINGING AWARENESS TO HOW WE CAN
IMPROVE FUNCTION.
A STATEMENT THAT FUELS MY WORK
IS THAT THE FITTER AN INDIVIDUAL
IS THE EASIER IT IS TO MANAGE
THEIR LIFE.
AND I BELIEVE THAT IS PROFOUNDLY
TRUE WITH DISABILITIES WITH
DISABILITIES AS WE ENCOUNTER
PHYSICAL CHALLENGES EVERY DAY.
AND REHABILITATION IS OPTIMIZING
FUNCTIONING FOR INDIVIDUALS IN
INTERACT WITH THEIR ENVIRONMENT
AND A CUTE REHAB PROCESS IS
IMPORTANT TO HELPING INDIVIDUALS
GET BACK TO THE LEVEL OF HEALTH
AND FUNCTION NEEDED TO MOVE
TOWARDS INDEPENDENCE AND TO MOVE
TOWARDS INCREASING PARTICIPATION
IN LIFE.
HOWEVER, THERE'S ALSO A LOT OF
VALUE IN THE SUSTAINABLE
ACTIVITIES FOR OPTIMIZING
HEALTH.
WE KNOW IMPROVING FUNCTIONING
AND EFFICIENCY IS A LIFE LONG
JOURNEY AND OUR GOAL IS TO AVOID
THAT CYCLICAL PROCESS OF
REHABILITATING, RECONDITIONING
AND HAVING TO REHABILITATE AGAIN
AND DECONDITION.
OUR APPROACH IN USING
REHABILITATION AND TECHNOLOGY IS
TO CREATE THOSE SUSTAINABLE
PROGRAMS SO THAT INDIVIDUALS CAN
OPTIMIZE THEIR FUNCTION TO
INCREASE PARTICIPATION IN LIFE
AND IN IMPROVE QUALITY OF LIFE.
SO IN ORDER TO DEVELOP THESE
SUSTAINABLE PROGRAMS
REHABILITATION NEEDS TO BE
CONVENIENT AND SUSTAINABLE.
TOOLS AND STRATEGIES IS
TELEREHABILITATION WHICH HAS
BEEN DEFINED OF DELIVERY OF
REHABILITATION SERVICES REMOTELY
USING INFORMATION AND
TECHNOLOGY.
THERE ARE SEVERAL TYPES OF
TECHNOLOGY THAT CAN BE USED
INCLUDING WEARABLES, WHETHER
IT'S TO TRACK ACTIVITY, TRACK
SLEEP, MEASURE HEART RATE OR
THERE'S EVEN NOW ABLE TO DO
THINGS SUCH AS BLOOD OXYGEN AND
EKGs AND I'M HONORED TO SAY IN
2016 WHEN I CAME TO LAKE SHORE
FOUNDATION APPLE WAS ON CAMPUS
AND CONDUCTING RESEARCH TO
INTEGRATE WHEELCHAIR USERS INTO
THE DESIGN OF THE ALGORITHMS AS
WELL AS THE USER INTERFACE AND A
WAS HAPPY TO PARTICIPATE IN THAT
AND I BELIEVE THERE'S SO MUCH
OPPORTUNITY TO REALLY INCLUDE
PEOPLE WITH DISABILITY EVEN
EARLIER ON IN THE DEVELOPMENT OF
NEW TECHNOLOGIES IN THIS SPACE.
THERE'S ALSO VIDEO CONFERENCING
FOR TELECOACHING.
THERE'S PHONE AND TEXT MESSAGING
WHETHER THAT'S AN INDIVIDUAL OR
MORE OF AN AUTOMATED PROCESS
SUCH AS INTERACTIVE VOICE
RESPONSE SYSTEMS.
THERE'S MOBILE AND WEB BASED
APPLICATIONS TO BE USED FOR
TELEREHABILITATION.
THERE'S MOBILE APPLICATIONS THAT
CAN BE WITH ONLINE MODE AND MORE
FEATURES SOCIAL ENGAGEMENT SUCH
AS MAKING POSTS AND COMMENTING
AND SENDING MESSAGES TO OTHER
INDIVIDUALS.
THERE'S MOBILE APPLICATIONS THAT
CAN BE OFFLINE SO INDIVIDUALS
WITHOUT INTERNET CONNECTIVITY
CAN STILL HAVE ACCESS TO THESE
PROGRAMS WITH VIDEO RESOURCES
AND ARTICLES AND THINGS OF THAT
NATURE.
AND SO WITH EACH OF THESE AND IN
COMBINATION OF THE DIFFERENT
TYPES OF INFORMATION AND
COMMUNICATION TECHNOLOGY, THERE
REALLY IS AN ENDLESS POSSIBILITY
FOR CREATING PROGRAMS FOR
IMPROVING THE LIVES OF
INDIVIDUALS WITH DISABILITY.
SO WITH ALL THE VARE TOOLS AND
STRATEGIES IT'S IMPORTANT TO
HAVE A FRAMEWORK TO GATHER AND
USE.
HERE HAPPENS TO BE A FRAMEWORK I
HAVE WITH ME.
THIS IS A FRAMEWORK WE'VE USED
IN GUIDING THE DEVELOPMENT OF
OUR PROGRAMS.
THE FIRST BEING TO PROVIDE
ACCESS AND A LOT OF THIS HAS
INVOLVED NAVIGATING AROUND THE
BARRIERS OF , COSTS AND BUILT
ENVIRONMENT.
SO TECHNOLOGY HAS ALLOWED US TO
NOT HAVE TO COME INTO OUR
FACILITIES BUT TO BE ABLE TO
PARTICIPATE FROM THE CONVENIENCE
OF THEIR HOME OR PERHAPS
SOMEWHERE IN THEIR COMMUNITY.
AFTER PROVIDING ACCESS THE GOAL
IS TO INCREASE THE USABILITY
WHETHER THAT'S CERTAIN EQUIPMENT
OR WHETHER THAT'S PROGRAMS.
SO MAKING SURE PROGRAMS ARE
ADAPTED TO THE INDIVIDUAL'S
LIVELY OF FUNCTIONING WHETHER
THAT'S COMPLETING EXERCISES FROM
A SEATED POSITION OR IF THEY'RE
ABLE TO STAND OR PERHAPS HEMI
PARESIS SUCH AS STROKE AND WE
WANT TO PROMOTE ADHERENCE TO THE
PROGRAMS.
THAT'S WHERE MY RESEARCH HAS
BEEN FOCUSSED LEADING UP TO THE
POINT OF HOW DO WE PROMOTE
ADHERENCE.
A LOT OF THIS RELIES ON SOCIAL
ENGAGEMENT SUCH AS INDIVIDUALS
BEING ABLE TO MESSAGE IN THE
OTHERS OR COMMENT OR MAKE POSTS
OR LIKE THEIR POSTS AND
MOTIVATION IS ARE CRITICAL WHEN
IT COMES TO PROMOTING ADHERENCE.
WE KNOW THAT INTRINSIC
MOTIVATION IS VALUABLE IN THE
REHABILITATION PROCESS FOR
INDIVIDUAL TO HAVE A GOAL OF WHY
THEY WANT TO IMPROVE THEIR
FUNCTIONING WHETHER THAT'S TO
RETURN TO WORK OR TO PARTICIPATE
IN FAMILY OR COMMUNITY LIFE.
SO HAVING THAT INTRINSIC
MOTIVATION IS IMPORTANT.
ALSO EXTRINSIC MOTIVATION IS
IMPORTANT AND WE CAN DO THAT
WITH REHABILITATION WHETHER
THAT'S GAMEFYING SOME OF THE
PROGRAMS, ADDING POINTS AND
BADGES OR CONNECTING THEM TO
INCENTIVES OR HAVING LEADER
BOARDS AND THAT MAKES IT MORE
ENJOYABLE AND PROMOTES THE
ADHERENCE.
AFTER PROMOTING ADHERENCE TO THE
PROGRAMS THE FOCUS IS ON
IMPROVING THE PHYSIOLOGICAL AND
PSYCHOLOGICAL HEALTH.
THAT'S REALLY WHAT WE'RE AT AT
THIS POINT IS NOW THAT WE'VE
CREATED THE PROGRAMS THAT ARE
ACCESSIBLE AND USING WE'RE
HONING ON THE LEVEL OF DOSING
NEEDED TO IMPROVE HEALTH
OUTCOMES.
SO WE'RE EVALUATING WHETHER ARE
THE BEST WAYS TO MEASURE FROM
DAY IT DAY TO DAY OR WEEK TO
WEEK USING MONITORING FROM THE
TECHNOLOGIES THAT'S ABLE TO
UPLOAD IN OUR CLOUD-BASED
PROGRAMS FOR LIVE EXERCISE
TRAINING IN THE HOME.
SO WHEN REMOVING BARRIERS
ANOTHER LAYER HAS APPEARED.
ONE THING THAT GOES GREAT WITH
FRAMEWORKS WHEN IT COMES TO
ADDRESSING BARRIERS IS
THEORETICAL MODEL.
AND IT JUST SO HAPPENS I BROUGHT
ONE WITH ME TODAY TOO.
THIS IS WHERE I CAN SPEND THE
REMAINDER OF MY TALK.
I HAD DONE A LOT OF WORK INTO
ADHERENCE AND STARTED DELIVERING
THE PROGRAMS I BEGAN TO SEE THE
CHALLENGE OF GETTING INDIVIDUAL
TO ADHERE OVER THE LONG TERM.
IN THE SHORT TERM EVERYONE'S
EXCITED ABOUT A NEW DEVICE OR
SOME NEW TECHNOLOGY TO TRY ON
AND AFTER THAT STARTS TO WEAR
OFF WE START TO FIGURE OUT HOW
DO WE IMPROVE ADHERENCE IN THE
LONG TERM.
SUSTAINABILITY IS THE GOAL.
AS MENTIONED IN AN EARLIER TALK
WHEN IT COMES TO TAKING IN
PARTICIPANTS' NEEDS WE SAT DOWN
WITH FOCUS GROUP.
ONE WITH INDIVIDUALS WITH SPINAL
CORD INJURY TO DEVELOP THIS
MODEL TO DECIDE HOW TO
PARTICIPATE IN A TRIAL.
WE FOUND INDIVIDUALS WERE ASKING
THEMSELVES THREE THINGS WHEN
CONSIDERING PARTICIPATION.
ONE, CAN I DO IT.
ARE THEY CAPABLE OF BEING ABLE
TO PARTICIPATE IN A PROGRAM
WHETHER THAT WAS A SECONDARY
HEALTH CONDITION THAT MIGHT BE
PRECLUDING THEM FROM ENROLLING
OR SCHEDULING OR TIME CONFLICT
OR COULD BE THEY KNOW THE
PROGRAM PROGRAM'S BENEFICIAL BUT
DON'T WANT TO GIVE UP A CONCERN
OR HAVE FEAR ABOUT AN INJURY.
THE SECOND QUESTION IS IS IT
WORTH IT AND PROS AND CONS FOR
ENROLLING IN THE PROGRAM AND THE
LEVEL OF MOTIVATION.
DID THEY HAVE AN INTRINSIC GOAL
THEY WERE LOOKING TO ACHIEVE AND
THIS WAS AN OPPORTUNITY TO
IMPROVE THEIR FUNCTIONING AND
PARTICIPATE.
AND DESIRAB DESIRABILITY AND TH
UNDERSTANDING WHAT THEY WERE
PUTTING IN THE PROGRAM AND THE
PERSONALIZATION AND WHETHER IT
WAS HOW FREAK IT WAS OR THEY HAD
TO HAVE RELIABLE INTERNET ACCESS
OR CERTAIN NOTIFICATIONS OR
WHATEVER IT MAY BE FOR THEM TO
REACH THE GOAL AND ANOTHER IS
TAILORING INDIVIDUALS.
WE FOUND CORRELATES OF ADHERENCE
WHETHER IT'S AGE OR PRIOR
TECHNOLOGY OR EXERCISE PROGRAMS.
THERE'S BEEN THE DEVELOPMENT OF
DECISION SUPPORT TOOLS FOR
TELEREHABILITATION PREFERENCES.
SO USING THINGS SUCH AS DISCREET
CHOICE EXPERIMENTS TO DEVELOP
THESE SUPPORT TOOLS TO HELP
DECIDE WHAT TYPE OF MODALITY
WILL BE BEST AND WHAT TECHNOLOGY
WILL BE BEST FOR THIS
INDIVIDUAL.
HOW FREQUENT SHOULD THE PROGRAM
BE.
THINGS OF THAT NATURE.
AND LASTLY ADJUSTING APPROACHES
THROUGH ADAPTIVE INTERVENTION
DESIGNS.
SO BEING ABLE TO HAVE AN
INDIVIDUAL BE ABLE TO GO THROUGH
THE PROGRAM AND BASED ON THEIR
RESPONSE WHETHER THAT'S A HEALTH
OUTCOME OR THEIR ADHERENCE LEVEL
TO BE ABLE TO THEN ADJUST THE
PROGRAM NEEDS TO THEM WHETHER
THAT'S ANOTHER PIECE OF
TECHNOLOGY OR REMOVING SOMETHING
OR ADDING IN ADDITIONAL SUPPORT
FROM A HEALTH CODE OR INSTRUCTOR
AND EXERCISE INSTRUCTOR.
I'M ALWAYS HAPPY TO DISCUSS MORE
ABOUT PATIENT-CENTERED APPROACH
TO DESIGN AND IMPLEMENTATION OF
PROGRAMS BUT I WILL MOVE ON TO
PROVIDING DETAILS ABOUT PROGRAMS
THAT HAVE BEEN DEVELOPED USING
THE FRAMEWORK AND THE MODEL.
I'M EXCITED TO SHARE THERE'S
BEEN A PROLIFERATION OF PROGRAMS
USING COMMUNICATION AND
TECHNOLOGY TO PROMOTE THE HEALTH
OF INDIVIDUALS WITH
DISABILITIES.
THIS IS FROM OUR GROUP AT UAB
WHETHER IT'S A PROGRAM FOR
STROKES IN CALIFORNIA OR A
PREVENTION PROGRAM IN CHICAGO
BUT AT UAB A LOT OF THE PROGRAMS
HAVE FOCUSSED ON FACILITATING
BEHAVIORS SUCH AS EXERCISE,
NUTRITION AND MINDFULNESS.
WE ALL KNOW AN A KEY PIECE TO A
PROGRAM IS A PROPER ACRONYM AND
LOGO.
SERIOUSLY, FIVE MONTHS IS
TYPICALLY THE TIME IT TAKES.
ONE USED INTERNET ACTIVITY TO
STRENGTHEN THE EXERCISE CONTENT
BUT HAD THE SOCIAL NETWORKING
FEATURE SUCH AS COMMENTING AND
LIKING.
THERE'S BEEN PROGRAMS DEVELOPED
FOR MULTIPLE SCLEROSIS THE
APPLICATION HAD AN OFFLINE MODE
SO INDIVIDUALS DID NOT HAVE TO
HAVE INTERNET CONNECTION TO GO
THROUGH THE 12 WEEK PROGRAM.
THERE'S PROGRAMS THAT WE'VE
DELIVERED USING ACCEPTANCE AND
COMMITMENT THERAPY TO ADDRESS
THIS ISSUE OF DEPRESSION AND
LONELINESS.
THIS PROGRAM WAS SPECIFICALLY
FOR INDIVIDUALS OF SPINAL CORD
INJURY AND WE COLLECTED GREAT
DATA AND RECEIVED FUNDING TO
DRIVER THAT PROGRAM AT A LARGER
SCALE.
THERE'S PROGRAMS THAT USE
IMMERSIVE VIRTUAL REALITY AND
THIS IS POPULAR AMONG CERTAIN
POPULATIONS EVEN INTRODUCING IT
INTO THE ICU TO GET KIDS BACK
MOVING AND INTERACTING USING
THIS IMMERSIVE V.R.
THERE'S VIDEO CONFERENCING FOR
COACHING AND REMOTE MONITORING
WITH WEARABLE.
WHAT'S ON THE HORIZON IS
TRAINING WITH REAL-TIME
MONITORING IS INDIVIDUALS DON'T
HAVE TO COME INTO THE FACILITY
TO HELP US IN DETERMINI DETERMIR
DOSING FOR CARDIO METABOLIC
OUTCOMES.
WE LEARNED A LOT FROM THE
DELIVERY OF THE PROGRAMS.
BEING AN OPTIMIST I'D LIKE TO
START WITH THE BENEFITS.
FIRST BENEFIT IS MORE AND
BETTER.
SO TELEREHABILITATION ALLOWS FOR
THE INCREASE OF DELIVERY OF
SERVICES.
SO SERVICES THAT OTHERWISE WOULD
NOT BE DELIVERED IF IT WASN'T
FOR THE USE OF TELEHEALTH
TECHNOLOGY.
THIS IMPROVED IN FOLLOW-UP RATES
AND IMPROVING ADHERENCE IN THE
SHORT-TERM.
AND ONE QUICK STORY I WAS
WORKING WITH THE LEADERSHIP TEAM
AT THE REHAB CENTER TO DEVELOP
COMMUNITY SUPPORT TEAMS FOR
INDIVIDUALS BECAUSE AS WE HAVE
SEEN DUE TO A HIGHER RATES OF
READMISSION AND
REHOSPITALIZATION FOR
INDIVIDUALS WITH SPINAL CORD
INJURY AND SEEING IT HERE AT THE
REHAB CENTER WHERE THERE'S OFTEN
INDIVIDUALS WHO HAVE THE LOWER
SOCIAL SUPPORT AND LOWER
FINANCIAL SUPPORT.
AND HELP INDIVIDUALS WITH
RE-INTEGRATION AND THEY WERE
REHOSPITALIZED ONE WAS A UTI
THAT LED TO KIDNEY INFECTION AND
ANOTHER WAS AN ULCER THAT ENDED
IN AMPUTATION AND WE WERE NOT
ABLE TO HELP AS A COMMUNITY
SUPPORT TEAM BECAUSE THE
INDIVIDUAL NEEDED CLINICAL CARE.
BOTH INDIVIDUALS WERE DISCHARGED
TO SKILLED NURSING FACILITIES.
IT WAS FROM THAT WE ARE
DESIGNING NEW PROGRAMS TO HELP
WITH EXTENDING THE CLINICAL
ENVIRONMENT INTO INDIVIDUALS
WHEN THEY RETURN HOME AND PARTLY
WITH COMMUNITY SUPPORTS AND
ORGANIZATIONS TO HELP WITH THIS
COMMUNITY INTEGRATION PROCESS.
BY DOING THAT IT'S DEVELOPING
ONLINE PLATFORMS WHERE
INDIVIDUALS CAN GO AND GET SOME
OF THAT HEALTH CARE THAT THEY
NEED, THAT CLINICAL CARE.
THERE'S OPPORTUNITIES FOR
MAINTAINING ENGAGEMENT FOR
INDIVIDUALS.
THERE'S A CONVENIENT AND
AFFORDABLE DELIVERY.
TECHNOLOGY HAS BECOME MUCH MORE
AFFORDABLE.
TABLETS AND USING WEARABLE
DEVICES AND THINGS OF THAT
NATURE AND THERE'S MORE
AVAILABILITY.
A LOT OF INDIVIDUALS ALREADY
HAVE A DEVICE THEY PREFER TO USE
TO PARTICIPATE IN PROGRAMS.
IT'S IMPORTANT TO KNOW WHAT'S ON
THE HORIZON.
TECHNOLOGY IS SORT OF THE WAY
THE WORLD IS GOING.
AND INCREASED INVESTMENTS IN
TECHNOLOGY.
MAKING PRODUCTS MORE AFFORDABLE
AND AVAILABLE.
IT'S OF COURSE MAKING THINGS
FASTER AND SMALLER AND ALL OF
THAT AND ARTIFICIAL INTELLIGENCE
AND THE VIRTUAL REALITY SPACE IS
GROWING AT AN EXPONENTIAL RATE.
IF YOU CAME TO THIS TALK
THINKING I WOULD GIVE AN IN
DEPTH DISCUSSION ON THE
METAVERSE, I'M NOT YOUR GUY.
THIS DOES LEAD INTO WHAT I
BELIEVE ARE SOME OF THE
CHALLENGE OF TELEREHABILITATION.
CONVENIENCE CAN BECOME THE ENEMY
OF REHABILITATION.
WE DON'T WANT WITH THIS
TECHNOLOGY TO BE A REPLACEMENT.
RATHER A TOOL.
WE HAVE SEEN LOWER ADHERENCE IN
THE LONG-TERM AND TRYING TO
UNDERSTAND HOW TO ADDRESS THAT
SUSTAINABILITY PIECE.
WE'VE SEEN SUSTAINABILITY PASSED
THE IN-PERSON REHAB COMPONENT
BUT HOW DO WE CONTINUE TO MAKE
IT MORE ATTRACTIVE OVER THE LONG
TERM?
THERE'S ALSO AND THE POWER OF
HUMAN CONNECTION.
THE VIRTUAL REALITY WORLD CAN
INCREASE BUT THERE'S SOMETHING
ABOUT BEING IN THE ROOM WITH
ANOTHER INDIVIDUAL AND HANDS-ON
CARE AND THERE'S USABILITY AND
CONNECTIVITY ISSUES WITH
TECHNOLOGY.
WHETHER IT'S THE INDIVIDUAL USER
THAT MAY STRUGGLE OR SOMETHING
CHANGED ABOUT THE TECHNOLOGY'
SPECIALLY WITH BIG DATA AND
LEADS ME TO WHERE WE CAN FOCUS.
MAKING SURE IT'S MEANINGFUL DATA
AND WE'RE COLLECTING THE RIGHT
DATA AND MAKING INCLUSION A BIG
PART OF THAT AND MAKING SURE
INDIVIDUALS WITH DISABILITY ARE
GETTING THE MEANINGFUL DATA
COLLECTED AND DATA THAT MATTERS
AND DATA THAT WE CAN USE AND
HYBRID CARE THAT DELIVERS IN
PERSON AND CREATING MOBILE
HEALTH CARE CLINICS THAT CAN GO
TO INDIVIDUAL'S HOME.
THERE'S AN ARRAY OF SERVICES
THAT CAN BE PROVIDED TO
INDIVIDUALS TO IMPROVE THAT
ACCESS.
AND SUSTAINABLE CARE.
THAT'S SOMETHING WE WANT TO
ADDRE
ADDRESS.
AND PROGRAMS THAT PEOPLE CAN
ALWAYS BE ENROLLING IN.
I'M HAPPY TO LISTEN IN ON THE
DISCUSSION IN REGARDS TO THAT
AND TECHNOLOGY DEVELOPMENT.
AND THE FIRST BULLET ON MAKING
SURE PEOPLE ARE INCLUDED IN THE
TECHNOLOGY DEVELOPMENT TO
COLLECT MEANINGFUL DATA.
AND I WOULD LIKE TO END WITH A
NOTE FROM A PARTICIPANT IN ONE
OF OUR PROGRAMS DELIVERING
MOBILE APPLICATION THAT
DELIVERED EXERCISE VIDEO CONTENT
WHERE INDIVIDUALS COULD LIKE AND
COMMENT AND MESSAGE OTHERS IN
THE PROGRAM AND ALSO JOIN TO A
WEEKLY VIDEO CONFERENCING CALL
WITH OTHER INDIVIDUALS IN THE
PROGRAM.
THE PERSON SAID RIGHT ABOUT NOW
THE SUPER HELP PROGRAM IS ONE
TEF OF THE BEST PROGRAMS
AVAILABLE IN THE DIFFICULT TIME.
I CAN STILL MOVE MY BODY AT A
HEALTHY PACE WITH AN INSTRUCTOR
AND WORK OUT WITHOUT WORRYING
ABOUT COMING IN CONTACT OR
PASSING OUT GERMS AND IN CONTACT
WITH PEOPLE AND ENJOYING WORKING
OUT ANYTIME I CHOOSE.
THANK YOU ALL FOR YOUR TIME AND
CONTINUED SUPPORT TO AA
COMMUNITY OF PEOPLE WHO WOULD
HAVE BEEN INACTIVE AND LEFT OUT.
I'M STILL RECOMMENDING THIS
PROGRAM TO PEOPLE NEED EXERCISE.
THIS PERSON SAID IT WAS A
MEANINGFUL ACTION AND PROVIDING
CONNECTION.
WE RECEIVE COMMENTS LIKE THIS
ALL THE TIME ESPECIALLY DURING
OUR EXIT INTERVIEWS AND IT FANS
THE FLAMES FOR CONTINUING THE
WORK IN DESIGNING AND
IMPLEMENTING MEANINGFUL PROGRAMS
TO IMPROVE THE LIVES OF
INDIVIDUALS WITH DISABILITY.
I ROOK FORWARD TO HEARING FROM
OTHERS.
ADDRESSING QUESTIONS WHETHER
THAT'S HOW DO WE INCREASE ACCESS
AND AVAILABILITY OF
TELEREHABILITATION TO ENSURE
EQUITY.
WHAT DATA IS NEEDED TO LOBBY FOR
HEALTH CARE REIMBURSEMENT AND
CONTINUE THE TELEREHAB ONGOING
AND GROW FROM THAT AND WHY
SHOULD TELEREHABILITATION BE A
PRIORITY.
IF YOU CAN ANSWER WHY IT WILL
HELP WITH THE INNOVATION AND
GROWTH NEEDED FOR THE FIELD.
THANK YOU FOR YOUR TIME AND
ATTENTION AND I LOOK FORWARD TO
THE DISCUSSION.
THANK YOU.
WE
>> WE HAVE A COUPLE QUESTIONS.
I'M CURIOUS IF YOU CAN TELL US
ABOUT THE SIZE OF THE SOME OF
THE PROGRAMS YOU'VE IMPLEMENTED
AND AS YOU POINTED OUT ONE OF
THE POTENTIAL BENEFITS OF
TELEREHAB IS THE ABILITY TO
COLLECT DATA IN WAYS THAT MAY
NOT BE SO EASY OR TENDS TO BE
BUILT IN.
CAN YOU DESCRIBE HOW SOME OF THE
DATA HAS BEEN USED?
>> YES.
IN TERMS OF THE SIZE OF THE
PROGRAMS WE'VE HAD PROGRAMS THAT
LISTED EIGHT WEEKS UP TO A FULL
YEAR ONE THING WE HAD TO SWITCH
WAS ASSESSMENTS FOR INDIVIDUALS.
AS THE ONE AREA WE CONTINUE TO
IMPROVE UPON WHETHER IT'S DOING
FUNCTIONAL MEASURES OF SIT TO
STAND OR GRIP STRENGTH TO
EVALUATE THE BENEFITS OF THE
PROGRAM OR WHETHER IT'S DOING
THE REAL TIME MONITORING FOR
HEART RATE.
ONE THING WE USED WITH WEARABLES
AND COLLECTING DATA IS ABOUT
ENGAGEMENT.
SEEING HOW ACTIVE INDIVIDUALS
ARE IN THE PROGRAM AND BECAUSE
WE'RE ON THE FOREFRONT OF
DETERMINING THE DATA THAT
MONITORING DATA WE'RE USING TO
CONNECT TO HEALTH OUTCOMES.
ONE OF THE CRITICAL PIECES HAS
BEEN MEASURING ENGAGEMENT OR
ADHERENCE TO PROGRAM.
HOW DO YOU DEAL TRYING TO
CONNECT AND PEOPLE WHO MAY HAVE
EMOTIONAL ISSUES AND KEEPING
THEM ENGAGED?
>> GREAT QUESTIONS.
ONE THING WE'RE GOING IS TO MAKE
SURE LAKE SHORE'S BEEN GREAT
ABOUT THIS.
WE HAVE A GREAT COMMUNICATIONS
TEAM TO BE ABLE TO HELP MAKE
SURE ALL THE PROGRAMS ARE
ACCESSIBLE FOR INDIVIDUALS
WHETHER IT IS HEARING IMPAIRED
OR VISUAL IMPAIRMENT.
AND ALSO BEING ABLE TO MAKE
SURE -- ONE THING WE'RE TRYING
TO DO NOW THAT WE HAVE ALL THESE
PROGRAMS IS TO ESTABLISH HOW DO
WE GET THE RIGHT PROGRAMS FOR
-- OR THE RIGHT ORDER AND HAVE
TO GO THROUGH THE ACCEPTANCE
PROGRAM FIRST OR THROUGH A BASIC
HEALTH COACHING PROGRAM BEFORE
THEY ENTER INTO AN EXERCISE
PROGRAM.
WE HAVE THIS HIERARCHY WHERE
INDIVIDUALS GO THROUGH A BASIC
PROGRAM TO START AND GET TO
CHOOSE THEIR OWN PATHWAY THAT
THEY NEED.
WE DO HAVE AN INTAKE TO BE ABLE
TO UNDERSTAND WHAT INDIVIDUAL'S
NEEDS ARE FROM A FUNCTIONAL
STATE.
GREAT QUESTION.
>> ANY QUESTION RELATES TO THE
POSSIBILITY OF THIS GOING
MAINSTREAM THROUGH THE
NOW-AVAILABLE REMOTE THERAPEUTIC
MONITORING BILLING CODES THAT
ARE BECOMING NOW POSSIBLE.
DO YOU HAVE ANY COMMENTS OR
SUGGESTIONS HOW THE CODES WILL
CHANGE THE LANDSCAPE.
WHAT IS THE POTENTIAL POSITIVE
AND NEGATIVE CONSEQUENCES AND
RTM COMING ONLINE AND DID YOU
USE IT IN HOW YOU DELIVER?
>> I KNOW A BIT ABOUT THAT
BECAUSE THAT'S ONE SPACE WE WANT
TO MOVE INTO IS DELIVERING FOR
RECENTLY ACQUIRED TECHNOLOGIES.
I THINK IT'S A GREAT OPPORTUNITY
TO BE ABLE TO PROVIDE CARE
BECAUSE WE'RE LOOKING TO SUSTAIN
IT AND IT COMES WITH THE COST OF
THE PROGRAMS AND IT'S A GREAT
BENEFIT.
MY CONCERN IS IT WOULD TAKE AWAY
FROM THAT IN-PERSON CARE IF THEY
CONTINUE TO PULL BACK THE LENGTH
OF STAY OR THE NUMBER
INDIVIDUALS CAN HAVE.
I BELIEVE THERE'S AN OPPORTUNITY
FOR MORE IN-PERSON DAYS AND WANT
TO USE THESE TYPES OF
TECHNOLOGIES.
>> HAVE YOU MADE CONNECTIONS
BETWEEN YOUR TALKS AND TYING
EXERCISE TO DIET AND NUTRITION
PROMOTION?
>> YES, THERE'S A PROGRAM
THROUGH THE NATIONAL CENTER FOR
HEALTH CALLED MENTOR WHERE IT IS
THAT HEALTH COACHING PROGRAM
WITH THE EXERCISE, MINDFULNESS
AND NUTRITION AND ONCE THEY
COMPLETE THAT PROGRAM THEY'RE
ABLE TO ENROLL IN A PROGRAM LIKE
THE SUPER HEALTH OR FOR
EXERCISING OR THERE'S A NEW
MENTAL HEALTH PROGRAM THAT'S
CURRENTLY COMING ONLINE CALLED
GROW OR GROWTH AND THERE'S A
CONNECTION OF PROGRAMS NOW NOW
THAT WE'VE TAKEN THEM THROUGH.
WE'LL ALSO BE PEEVING TOGETHER
PROGRAMS TOO.
>> ANY FINAL QUESTIONS FOR
JEREME?
THANK YOU AGAIN.
THAT WAS AN INTERESTING
PRESENTATION.
I APPRECIATE YOUR TIME.
>> THANK YOU.
THE LAST ITEM IS PLANNING FOR
OUR MEETING IN MAY.
HOPEFULLY WE'LL GET TO SEE EACH
OTHER IN PERSON.
DO WE HAVE SUGGESTIONS FOR
TOPICS?
IN THE PAST WE TRIED TO CRAFT AN
AGENDA THAT TAKES INPUT FROM THE
ADVISORY BOARD.
JEREME'S PRESENTATION WAS AN
EXAMPLE.
THE FLOOR IS OPEN FOR WHAT YOU'D
LIKE TO DISCUSS AT AN UPCOMING
MEETING.
YOU SCAN THINK ABOUT THIS IN
TERMS OF TOPICS OR PEOPLE TO
START A CONVERSATION.
IT'S WORTH DIVING DEEPER AND
EXPLORE MORE HOW WE CAN SUPPORT
PRIMARY RESEARCH IN SETTINGS AND
CONTINUED INSURANCE SUPPORT OVER
THE LONG-TERM.
>> GOOD SUGGESTION.
>> I'D LIKE TO PROPOSE AND
INVITE COLLEAGUES AND OTHERS TO
TALK ABOUT WHAT EFFORTS ARE
BEING DONE IN OTHER AGENCIES AND
FIND SYNERGIES.
>> COLLEAGUES FROM OTHER
AGENCIES FOR WHAT EFFORTS?
>> FOR REHABILITATION.
>> FUNDING IN REHABILITATION
SPECIFICALLY.
>> I FEEL LIKE ONE THING THAT'S
STILL A MAJOR PROBLEM IS
SUSTAINABILITY.
IN TERMS OF HOW WE GET PEOPLE TO
DO INTERVENTION AND ONCE THE
WORK IS DONE HOW TO GET PEOPLE
TO CONTINUE DOING INTERVENTIONS
LONG TERM LIKE IF YOU HAVE TO
TAKE A MEDICATION FOR A LONG
PERIOD YOU PROBABLY HAVE TO DO
THESE OTHER THINGS LONGER
PERIOD.
I'D LIKE TO HEAR MORE ABOUT
STUDIES THAT ARE LOOKING AT
MECHANISM BUT TRYING TO APPROACH
THIS FROM A REHABILITATION AND
HOW THEY'RE WORKING IN MORE
DETAIL.
USING DIFFERENT OUTCOME MEASURES
OR APPROACHES AND UNDERSTANDING
SOME OF THE BIOLOGY OF WHY THIS
MIGHT IMPROVE FUNCTION FOR
PEOPLE.
>> GREAT, THANKS.
GOOD SUGGESTIONS.
>> I'D LIKE TO SUGGEST KNOWLEDGE
TRANSLATION TO THE CLINIC.
I THINK WE'RE DOING A LOT OF
STUDIES THAT HAVE REVEALED
MECHANISMS AND STRATEGIES THAT
CAN BE INCORPORATED INTO CURRENT
REHABILITATION IN THE FIELD I'LL
LOOK AROUND BUT I DON'T KNOW
ANYONE THAT CAN SPEAK ON THE
TOPIC BUT IT'S AN IMPORTANT ONE.
I FIND THE PACKAGE OF
INTERVENTIONS WHICH ARE THE
FUNDAMENTAL EVIDENCE USED TO
DESIGN AND THEN DEPLOY I'M IN
OUR SURE WE'RE THE BEST TO SPEAK
TO THE ISSUE OF POLICY.
I THINK THERE'S LEADERS IN THE
EVIDENCE SIDE OF THINGS.
SPECIFICALLY WHAT EVIDENCE IS
THERE FOR THE PACKAGES OF
INTERVENTIONS TO BE USEFUL AND
FRUITFUL AND THE LIKE.
JUST ANOTHER SUGGESTION.
>> ANYONE ELSE?
IT GIVES US A LOT OF TO WORK
WITH FOR THE MAIN MEETINGS.
THANK YOU FOR THE SUGGESTIONS.
WITH THAT, I'D LIKE TO CLOSE THE
MEETING.
RALPH, DO YOU HAVE ANY FURTHER
COMMENTS?
>> FIRST, I WANT TO THANK THE
VARIOUS SPEAKERS EXTERNALLY AND
INTERNALLY.
WE HAD A GREAT DAY AND A HALF ON
DISCUSSION.
THANK YOU FOLKS FOR HANGING IN
THERE AND THE PEOPLE IN THE
PUBLIC LISTENING TO THE BOARD
MEETING AND LOOKING FOR
INSPIRATION.
I HOPE THIS PRESENTED THEM WITH
A LOT OF INSPIRATION FOR THEIR
RESEARCH AND ADVOCACY AND
SUPPORT I THINK WE HAD ENGAGING
DISCUSSIONS.
IT'S GREAT TO SEE THAT.
IT HELPS US DURING THE REST OF
THE CALENDAR YEAR AND I WANT TO
KEEP REMINDING YOU FOLKS, DON'T
BE A STRANGER.
IT'S NOT JUST IN DECEMBER BUT
OUR MAILBOXES ARE OPEN.
WE LOOK FORWARD IT DISCUSSIONS.
TERESA, OFF TO YOU.
>> THANK YOU, RALPH.
AND THANK YOU FOR KEEPING US ON
TRACK.
I THINK ALL THE SPEAKERS WERE
FABULOUS AND WE VALUE THE INPUT
YOU GIVE US AND TAKE IT
SERIOUSLY.
AND I VERY MUCH APPRECIATE AND
THANK YOU ALL AND WE HOPE WE'LL
BE IN PERSON IN MAY THAT IS THE
PLAN.
AND WE LOOK FORWARD TO SEEING
YOU IN BETHESDA.
>> DID YOU HAVE ANYTHING YOU
WANTED TO ADD BEFORE WE HEAD OUT
OR ARE YOU JUST SAYING GOOD-BYE?
>> JUST SAYING GOOD-BYE.
>> OKAY.
ALL RIGHT.
APPRECIATE IT-OVER AND OUT.
>> THANKS AGAIN, EVERYONE.
AND AGAIN FOR THE FINAL TIME
THANKS FOR THE GREAT
DISCUSSIONS.
I LOOK FORWARD TO SEEING YOU ALL
IN MAY.
TAKE CARE.