OKAY.
WELCOME TO THE NATIONAL
ADVISORY BOARD ON MEDICAL
REHABILITATION RESEARCH COMING
FROM THE NATIONAL INSTITUTES OF
HEALTH.
THIS IS A PUBLIC MEETING.
IT'S DAY AND A HALF MEETING AND
GOING TO TURN THE MEETING OVER
TO BARBARA BREGMAN TO INTRODUCE
AND CHECK THE MINUTES AND GIVE
YOU FUTURE DATES.
>> GOOD MORNING.
THANK YOU.
GOOD MORNING, EVERYBODY.
>> GREAT TO SEE YOU ALL.
THANKS FOR YOUR POST
THANKSGIVING TRAVEL.
WE'LL GO AROUND THE TABLE AND IF
ALL THE CURRENT MEMBERS WOULD
INTRODUCE THEMSELVES BY NAME AND
ASSOCIATION AND THE NEW PEOPLE
AND SCIENTIFIC BACKGROUND.
>> SARAH BLANTON AND FROM EMORY
UNIVERSITY.
>> I'M STEVE CRAMER FROM UCLA.
AM I NEW?
ME CAREER IS PASSIONATELY
RELATED TO THE RETURN OF
MOVEMENT AFTER STROKE IN HUMANS.
>> MY NAME IS KATHY ZACHOWSKI
REPRESENTING THE MS SOCIETY.
>> I'M FROM PENN STATE.
>> I'M FROM THE UNIVERSITY OF
HOUSTON.
>> I'M NEW AND AT THE FOUNDATION
WE REPRESENT PEOPLE WHO LIVE
WITH SPINAL CORD INJURY AND
PARALYSIS AND LIVE WITH MULTIPLE
SCLEROSIS.
>> I'M FROM THE SPINE LAB IN
CHICAGO.
>> GOOD MORNING MY NAME IS CARL
COOPER THE EXECUTIVE DIRECTOR OF
THE AMERICAN ASSOCIATION OF
HEALTH AND DISABILITY.
I'M A NEW MEMBER AND MY
ORGANIZATION WORKS TO IMPROVE
HEALTH AND WEALTH FOR PEOPLE
WITH DISABILITY OR ACROSS THE
LIFE SPAN.
I HAVE LIVED EXPERIENCE AS A
PERSON WITH DISABILITY HAVING
BORN WITH A CONDITION WHICH
AFFECTS MY LOWER AND UPPER LIMBS
AND ALSO AN ATTORNEY BY
TRAINING.
>> TERESA CRUZ.
>> BARBARA BREGMAN NATIONAL
REHABILITATION HOSPITAL.
>> I'M ROOVL BRECKMAN EXECUTIVE
SECOND QUARTER AND DEN MOTHER
FOR THIS GROUP.
>> GOOD MORNING.
I'M THE DIRECTOR OF STUDENT
ACCESSIBILITY AND ACCOMMODATION
SERVICES AT UNIVERSITY OF
MICHIGAN AND IDENTIFY AS
DISABLED AS A WHEELCHAIR USER.
>> THIS IS TIFFANYYU MY PRONOUNS
ARE SHE/HER AND WE'RE AN
ENTIRELY DISABLED RUN AND LED
ORGANIZATION BUILT ON ADVANCING
POWER AND LEADERSHIP AND
ACQUIRED MY DISABILITY INJURY AT
THE AGE OF 9.
>> I REPRESENT THE NATIONAL
INSTITUTE OF NEUROLOGIC DISORDER
AND STROKE.
>> I'M MICHELLE JOHNSON SOCIETY
PROFESSOR OF UNIVERSITY OF
PENNSYLVANIA AND DO RESEARCH IN
NON-TRAUMATIC BRAIN INJURY WITH
REHABILITATION WITH ROBOTICS.
>> ONLINE I'M GOING TO CALL
PEOPLE OUT.
FIRST WE HAVE STEVEN.
>> STEVEN CATANE FROM THE
HOSPITAL IN DETROIT.
>> AND CHRIS JADEN.
I'M IN THE DEPARTMENT OF
COMMUNICATIVE DISORDERS AND
SCIENCES AT THE UNIVERSITY OF
BUFFALO.
>> I'M FRANCISCO FROM THE
UNIVERSITY OF SOUTHERN
CALIFORNIA AND WORK IN
COMPUTATIONAL NEUROSCIENCE AND
ENGINEERING.
>> THANK YOU.
WE HAVE A FEW EX-OFFICIOS.
>> ED VITILI FOR AT THE
DEPARTMENT OF EDUCATION
REHABILITATION SERVICES.
>> JOHN SHERRA.
>> I'M TAYLOR GILLAND WORKING
WITHIN THE OFFICE OF THE
DIRECTOR AND SHE SHOULD BE
JOINING IN THE NEXT 30, 60
MINUTES AND I'M SITTING IN HER
PLACE.
HAPPY TO BE HERE.
>> THANKS, TAYLOR.
>> I'M WITH THE CRAIG NEILSON
FOUNDATION SENIOR VICE PRESIDENT
AND IN RESEARCH.
>> JOHN, DO WE HAVE YOU NOW?
.
JOHN IS OUR REPRESENTATIVE FROM
THE DOD.
>> I'M HAVING COMPUTER ISSUES.
I CAN'T SEE MY VIDEO ON.
EXECUTIVE DIRECTOR --
[AUDIO DIGITIZING]
.
>> THANKS, JOHN, I THINK WE GOT
PART OF THAT.
I HEARD ACTIVE DUTY.
THANK YOU FOR JOINING AND
HOPEFULLY WE'LL GET YOU CLEARED
IN A MINUTE.
>> AND LAST BUT NOT LEAST,
DR. BIANCHI.
>> GOOD MORNING, EVERYONE.
I HOPE EVERYONE HAD A GOOD
HOLIDAY.
HAPPY TO JOIN YOU AND I GUESS
I'LL BE PRESENTING SOON SO
YOU'LL HEAR WHAT I HAVE TO SAY
SO AGAIN WELCOME EVERYONE.
>> GOOD TO SEE YOU.
WELCOME.
SO GLAD WE'RE ALL HERE.
REMINDERS THAT THE NEXT MEETING
IS MAY 5 AND 6, 2025.
DECEMBER 1 AND 2, 2025 AND MAY 4
AND 5, 2026.
I WANT TO BE SURE EVERYONE
UNDERSTANDS THE MEETING'S BEING
RECORDED AND I THINK THE NEXT
THING WE'LL DO IS I'LL CALL FOR
A MOTION TO APPROVE THE MINUTES
FROM LAST MEETING.
>> AS YOU FOLKS KNOW THE MINUTES
ARE ALWAYS POSTED ON THE WEBSITE
AND THE VIDEOCAST IS ALWAYS
ARCHIVED AND YOU CAN ALWAYS GO
BACK TO THAT AS WELL.
>> SEEING NO OBJECTS, WE'LL
CONSIDER THE MINUTES APPROVED.
AND WE'LL MOVE ON TO
DR. BIANCHI, DIRECTOR OF NICHD
AND IF YOU'RE READY,
DR. BIANCHI, THE FLOOR IS YOURS.
>> I AM AND I SEE THE SLIDES UP.
I'M GOING TO GIVE MY
PRESENTATION AND WELCOME YOUR
QUESTIONS AT THE END.
SO, I'M GOING TO TRY TO COVER
THESE TOPICS.
THE PRESIDENTIAL TRANSITION,
EXTERNAL ENGAGEMENT AND NIH
RESEARCH UPDATES AND IMPORTANT
UPDATES ON TRAINING WHICH I KNOW
IN MY CONVERSATIONS WITH MANY OF
YOU PREVIOUSLY IS TOP OF MIND
AND THEN WE'LL GIVE YOU AN
UPDATE ON THE NICHD STRATEGIC
PLAN FOR 2025.
SO PRESIDENTIAL TRANSITION.
THE NIH DIRECTOR AND THE
DIRECTOR OF THE NATIONAL CANCER
INSTITUTE ARE POLITICAL
APPOINTMENTS.
THE NIH REQUIRES SENATE
CONFIRMATION.
DURING A PRESIDENTIAL
CONTRIBUTION IT REQUIRES A
LETTER OF RESIGNATION OR AND
PRESIDENT TRUMP REJECTED THE
LETTER OF RESIGNATION FROM
DR. COLLINS.
I DON'T KNOW IF DR. BERTAGNOLLI
HAS SUBMITTED A LETTER OF
RESIGNATION BUT INCOMING
PRESIDENT TRUMP HAS ANNOUNCED A
SELECTION FOR THE NEXT DIRECTOR
OF NIH.
SO, IN A SENSE IT'S KIND OF
ACCELERATING THE WHOLE
PROFESSION AND DR. JAY
BATACHOURIA IS THE CHOICE AND
WILL NEED TO UNDER GO SENATE
CONFIRMATION.
REGARDLESS OF WHO WON THE
ELECTION BACK IN THE EARLY FALL,
EACH OF THE INSTITUTES AND
CENTERS WERE ASKED TO PROVIDE
INFORMATIONAL BRIEFING TOPICS.
THESE WERE THOUGHT TO BE
HOT-BUTTON TOPICS THAT MIGHT BE
OF INTEREST TO THE TRANSITION
TEAMS NO MATTER WHO WON.
FOR NICHD SOME WERE INCLUDED BUT
NOT LIMITED TO INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES,
REPRODUCTIVE HEALTH AND
REHABILITATION HEALTH AND
MATERNAL RESEARCH.
THE REST OF INSTITUTE AND CENTER
DIRECTORS ARE MERIT BASED AND WE
UNDER GO A FORMAL REVIEW EVERY
FIVE YEARS.
I'VE ALWAYS BEEN REVIEWED ONCE.
THERE'S SOME QUESTION OF WHAT
WILL HAPPEN IN THE FUTURE BUT
FOR NOW IT'S NOT CONSIDERED TO
BE A POLITICAL APPOINTMENT TO BE
THE DIRECTOR OF NICHD.
THERE'S A CONTINUING RESOLUTION
WHICH MEANS THAT WE ARE
OPERATING ON A FLAT BUDGET BASED
ON WHAT WE RECEIVED AS
APPROPRIATIONS LAST YEAR.
WE'RE HOPING THAT WILL BE
RESOLVED BEFORE THE TRANSITION
WE KNOW MEMBER OF CONGRESS ARE
ACTIVELY WORKING ON THIS BUT
DON'T HAVE UPDATES FOR YOU.
PART OF OUR JOB IS TO MEET WITH
VARIOUS EXTERNAL ADVOCATES AND
PEOPLE WHO ARE INTERESTED IN THE
KIND OF WORK THAT WE DO.
IN THE LATE SUMMER WE HAD A VERY
PRODUCTIVE VISIT FROM THE
DELEGATION FROM THE UNIVERSITY
OF SINGAPORE.
THEY WERE VERY INTERESTED IN
WHAT WE ARE FUNDING IN TERMS OF
BOTH PEDIATRIC RESEARCH AS WELL
AS REHABILITATION RESEARCH.
THEY WERE PARTICULARLY
INTERESTED IN WHAT WE'RE DOING
IN TERMS OF ARTIFICIAL
INTELLIGENCE AND I WANTED TO LET
YOU KNOW THAT DR. JOE BONNER WAS
REPRESENTING THE INTERESTS OF
THE N NABMRR AT THAT
INTERNATIONAL MEETING.
LATER IN THE FALL THE FRIENDS OF
THE NICHD WHICH IS A LARGE
ORGANIZATION COMPOSED OF MANY OF
OUR ADVOCACY GROUPS ORGANIZED A
CONGRESSIONAL VISIT TO THE NIH
CAMPUS.
TO MY KNOWLEDGE IT'S THE FIRST
TIME THERE WAS EVER A
CONGRESSIONAL VISIT THAT
FOCUSSED ON NICHD RESEARCH WHICH
WAS A GOOD THING.
WE HAD ATTENDEES FROM SEVEN
DIFFERENT CONGRESSIONAL OFFICES.
BOTH MEMBERS OF THE SENATE AND
HOUSE OF REPRESENTATIVES.
TERESA CRUZ REPRESENTED NCMRR
AND THE HIT WAS THE LABORATORY
TOURS AND MEETING INTRAMURAL AND
EXTRAMURAL RESEARCH STAFF.
AS ALWAYS THE PEOPLE WHO STOLE
THE SHOW WERE CHILDREN ON
PROTOCOL FOR METABOLIC DISORDERS
AND HOSPITALIZED AND THEY AND
THEIR FAMILIES TALKED ABOUT HOW
GRATEFUL THEY WERE THAT THE
NICHD COULD DO RESEARCH ON THEIR
CHILD'S DISORDERS.
THE FACT THE DOCTORS ARE
INTRAMURAL STAFF KNEW WHAT THE
CONDITION WAS AND KNEW THE KIND
OF DIETS THEY NEEDED AND REALLY
ACTED AS A RESOURCE FOR THE
FAMILIES.
I THINK THAT WAS IMPRESSIVE TO
THE MEMBERS OF CONGRESS AND
WE'VE ALREADY HAD SOME FOLLOW-UP
WITH VARIOUS STAFF MEMBERS.
SINCE IT IS CONGRESS WHO
APPROPRIATES OUR BUDGET AND
SINCE OUR NAME DOESN'T ALWAYS
REFLECT WHAT IT IS WE DO, THESE
KINDS OF RELATIONSHIPS ARE
IMPORTANT.
SO, IN ADDITION, RIGHT NOW THERE
IS A NATIONAL ACADEMY OF
MEDICINE STUDY EXAMINING
STRATEGIES TO ENHANCE PEDIATRIC
HEALTH RESEARCH FUNDED BY THE
NIH.
THIS IS REQUIRED BY CONGRESS.
WE'RE THE STUDY SPONSORS.
IT WAS PUT IN OUR FISCAL YEAR
'24 BUDGET AND THIS COMMITTEE
WILL EXAMINE THE PORTFOLIO OF
NIH PEDIATRIC RESEARCH AS WELL
AS STRUCTURE.
SO IT'S LOOKING AT THE METHODS
AND RATIONALE CATEGORIZING
PROJECTS AS PEDIATRIC RESEARCH
USING THE RCDC PROCESS THE
RESEARCH CONDITION AND DISEASE
CATEGORIZATION.
SO, WHEN YOU GO TO THE RCDC
WHICH IS PUBLICALLY AVAILABLE
ONLINE YOU CAN LOOK TO SEE BOTH
IN GENERAL WHAT IS CATEGORIZED
AS CHILD HEALTH RESEARCH AS WELL
SPECIFIC CONDITIONS.
AND THEY WANT TO KNOW MORE ABOUT
HOW PEDIATRIC COMPONENTS HAVE
BEEN INCLUDED OR EXCLUDED FROM
LARGER NIH INITIATIVES FOR
EXAMPLE CLIMATE CHANGE AND
HEALTH.
THIS IS SOMETHING THAT WE'RE
ACTUALLY QUITE PLEASED WITH
BECAUSE MANY OF OUR STAFF
MEMBERS ARE REPRESENTING
CHILDREN ON THESE LARGER
INITIATIVES AND IT TAKES A LOT
OF TIME AND EFFORT AND SOMETIMES
SWIMMING UP STREAM TO HAVE
CHILDREN INCLUDED IN THESE
INITIATIVES.
AND THERE'S INTEREST IN HOW
PEDIATRIC RESEARCH ARE
ESTABLISHED AND STRUCTURAL OR
PROCESS IMPEDIMENTS TO PEDIATRIC
RESEARCH APPLICANTS.
HOW WE COORDINATE PEDIATRIC
RESEARCH ACTIVITY.
OF COURSE WE DO THAT THROUGH
NPERC A CONSORTIUM OF SENIOR
REPRESENTATIVES AND CENTERS AND
ZAUZ WHAT THEY'RE DOING IN TERMS
OF PEDIATRIC RESEARCH.
THE GOAL IS HOW THE CLINICAL
CENTER COULD INCLUDE MORE
PEDIATRIC PATIENTS AND
PROTOCOLS.
THERE'S A DRAFT IF YOU WANT TO
REVIEW IT YOU CAN CLICK THIS
LINK AND IF YOU DON'T THINK
THERE'S ENOUGH REPRESENTATION
FROM A SPECIFIC SPECIALTY YOU'RE
ENCOURAGED TO COMMENT IN THE
NEXT WEEK THOUGH IT'S KIND OF
INTERESTING THE FIRST MEETING IS
GOING TO OCCUR BEFORE THE
COMMITTEE HAS RECEIVED THE
PUBLIC COMMENTS.
THERE WILL BE ABOUT THREE TO
FIVE MEETINGS OVER A PERIOD OF
18 MONTHS AND A FINAL REPORT IS
EXPECTED IN JANUARY OF 2026.
NOW WE'LL GET TO TRAINING.
SO, OUR EXTRAMURAL STAFF HAS
BEEN WORKING ON TRAINING AND
CAREER DEVELOPMENT REALLY TAKING
A COMPREHENSIVE VIEW OF HOW
WE'RE PROVIDING OPPORTUNITIES
FOR EXTRAMURAL TRAINING AND
CAREER DEVELOPMENT AND THEY'VE
COME UP WITH THE FOLLOWING
RECOMMENDATIONS.
NUMBER ONE IS TO REINVIGORATE
INSTITUTIONAL TRAINING AND
CAREER DEVELOPMENT PROGRAMS.
NUMBER TWO IS TO RETHINK HOW WE
TALK ABOUT OUTCOMES.
SO, TYPICALLY A SUCCESSFUL
OUTCOME IS DEFINED AS SOMEONE
WHO CONTINUES TO GET NIH
RESEARCH FUNDING AS WELL AS
PROGRESSES UP THE ACADEMIC
LADDER.
AND WE ARE RETHINKING OTHER
METRICS OF SUCCESS SO FOR
EXAMPLE A CAREER IN INDUSTRY, A
CAREER IN GOVERNMENT WHERE
THEY'RE ALL DEALING WITH
RESEARCH BUT NOT IN ESSENTIALLY
AN ACADEMIC PARADIGM.
WE WENT TO TALK UP THESE
ALTERNATIVE CAREERS SO PEOPLE
REALIZE THEY'RE VERY VALUED AND
PART OF THE ENTIRE RESEARCH ECO
SYSTEM.
WE ALSO THINK WE COULD DO BETTER
IN TERMS OF CREATING COMMUNITIES
AMONGST TRAINEES TO GIVE PEERS
THE OPPORTUNITY TO SHARE
EXPERIENCE, WISDOM, CHALLENGES,
ETCETERA.
AND WE'D LIKE TO USE THE
TRAINING CAREER DEVELOPMENT
PROGRAMS TO DIVERSIFY THE REACH.
WE'VE BEEN BEEN SUCCESSFUL IN
REINVIGORATING THE LOAN PROGRAM
AND NEED TO USE THE TRAINING
PROGRAMS TO SUPPORT STRATEGIC
RESEARCH PRIORITIES.
I'M VERY TO SAY THAT IN THE LAST
PHYSICAL YEAR WE INCREASED THE
FUNDING FOR NICHD'S LOAN
REPAYMENT PROGRAM BY 28%
COMPARED TO FISCAL YEAR '23.
THAT'S A HUGE SUCCESS AND CAN BE
TRANSFORMATIVE.
I KNOW IN MY PREVIOUS ACADEMIC
LIFE BEING A MENTOR TO SOMEONE
WHO SAID THAT THE $200,000 SHE
RECEIVED TAX FREE FROM THE LOAN
REPAYMENT PROGRAM WAS TRULY
TRANSFORMATIONAL AND KEPT HER IN
ACADEMIC MEDICINE.
WE ALSO DECIDED WE WOULD CLUSTER
TYPE I AND TYPE II THE RENEWAL
APPLICATIONS SEPARATELY BECAUSE
IT WASN'T THERE TO COMPARE A
PROGRAM IN EXISTENCE FOR YEARS
AND COMPARE THAT WITH A BRAND
NEW APPLICATION.
THEY'RE GOING TO BE REVIEWED
SEPARATELY.
WE'VE ALSO ADDED RESEARCH
WORKFORCE TRAINING AS A NEW
CROSS-CUTTING THEME IN THE NEW
STRATEGIC PLAN WHICH YOU WILL
SEE.
AND WE'VE ALSO AT EVERY STEP OF
THE WAY CONSIDERED EXPANDING
OUTREACH FOR TRAINING
OPPORTUNITIES AND I KNOW THAT
THERESA HAS BEEN A LEADER WITH A
LASER FOCUS ON TRAINING IN
REHABILITATION RESEARCH.
WE'VE ALSO OPENED UP THE
OBSTETRIC PEDIATRIC THERAPEUTICS
BRANCH WORKSHOP FOR CLINICAL
PHARMACOLOGY TRAINING.
YOU DON'T HAVE TO BE JUST IN
THAT NETWORK TO LISTEN TO THEIR
TRAINING OPPORTUNITIES AND OUR
OFFICE OF HEALTH EQUITY HAS
CREATED NEW MATERIALS FOR
EXTRAMURAL AND INTRAMURAL
TRAINING TO DISTRIBUTE AT
SCIENTIFIC CONFERENCES.
IN ADDITION THE OFFICE OF HEALTH
EQUITY HAS BEEN HOSTING SESSIONS
ON EXTRAMURAL FELLOWSHIP AND
CAREER DEVELOPMENT
OPPORTUNITIES.
EACH OF THE SESSIONS WILL FOCUS
ON A SPECIFIC FUNDING MECHANISM.
THEY'RE PLANNING TO HOST
ANNUALLY AND THE DECEMBER 9th IS
GOING TO FOCUS ON THE F99 TO K00
TRANSITION AWARD AND MARCH 13 ON
THE PATHWAY TO INDEPENDENCE
AWARD.
THE LINK ARE THERE AND WE'LL
MAKE SURE YOU HAVE ACCESS TO
THOSE SLIDES A FEW RESEARCH
UPDATES BECAUSE I'D LIKE TO
LEAVE TIME FOR QUESTIONS THOUGH
I KNOW WE'RE RUNNING LEAD.
I'D LIKE TO SHARE WITH EVERYONE
WE'RE INCREASINGLY USING
FLEXIBLE FUNDING MECHANISMS.
SO IN SOME SITUATIONS WHERE AS
THE A PUBLIC HEALTH CHALLENGE
MECHANISMS OTHER THAN
TRADITIONAL GRANTS CAN BE USED
TO SUPPORT RESEARCH.
SO THERE'S TWO I WANTED TO
HIGHLIGHT HERE.
ONE ARE THE CHALLENGES OR PRIZE
COMPETITIONS.
SO THESE ARE OPPORTUNITIES TO
ENGAGE PUBLIC INNOVATORS TO FIND
INTERESTING IDEAS OR SOLUTIONS
TO IMPORTANT PROBLEMS.
AND WE USE KIND OF A SHARK TANK
APPROACH AND OFFER PRIZES ALONG
THE WAY AND NON-MONETARY
BENEFITS INCLUDING SUPPORT FROM
THE COMMUNITY OR FROM EXPERTS
JUDGING GRANTS.
ALSO THE OPPORTUNITIES TO SPEAK
AT A WORKSHOP THAT ARE HELPING
PARTICULARLY WITH INDUSTRY
PARTNERS TO HELP THEM PITCH
THEIR PRODUCT OR THEIR
INNOVATION.
THE OTHER TRANSACTION AUTHORITY
INCLUDES NON-TRADITIONAL
RESEARCH PARTNERS OR SITUATIONS
WHERE THERE'S A NEED TO
NEGOTIATE FLEXIBLE TERMS AS WELL
AS HAVE THE FLEXIBILITY TO
ADDRESS QUICKLY CHANGING
SCIENTIFIC REQUIREMENTS.
SO WE USE THAT DURING THE
PANDEMIC QUITE A BIT.
AND ALMOST ALWAYS THESE AWARDS
CAN BE MADE MUCH MORE QUICKLY
THAN THE TRADITIONAL GRANT
MECHANISM LIKE AN RO1 WHERE AT A
MINIMUM IT'S A YEAR FROM THE
TIME YOU SUBMIT YOUR
APPLICATION.
TO ILLUSTRATE WHAT THE NEW
MECHANISMS ARE WHICH IS AN
OUTCOMES VISION FOR EVERYONE.
I THINK MOST PEOPLE KNOW WE HAVE
A REAL PUBLIC HEALTH CRISIS WITH
ONE OF THE HIGHEST LEVELS OF
MATERNAL MORTALITY IN THE
DEVELOPED WORLD.
SO CONGRESS HAS GIVEN US
SPECIFIC MONEY FOR THE IMPROVE
INITIATIVE AND WITH THAT WE ARE
ABLE TO FUND MATERNAL MECHANISMS
AND THERE WERE 10 AND NOW
THERE'S 12.
WE DID HAVE SEVERAL CHALLENGES.
ONE WAS CONNECTING THE COMMUNITY
FOR PLA TERM HEALTH AND THAT WAS
TO HELP EDUCATE COMMUNITY-BASED
ORGANIZATIONS ON HOW TO BUILD A
RESEARCH INFRASTRUCTURE AND THEY
RECEIVED FUNDING AS WELL AS
ADVICE AND COULD BE MORE
COMPETITIVE FOR FUTURE GRANT
APPLICATIONS.
THERE WAS A RAD X TECH FOCUSSED
ON POSTPARTUM DIAGNOSTICS AND
MONITORING BECAUSE OVER HALF THE
WOMEN WHO DIED RELATED TO
PREGNANCY ARE DYING IN THE
POST-PARTUM PERIOD AFTER
DELIVERY IN THE YEAR AFTER
DELIVERY.
I WANTED TO MENTION SOME OF
THESE BECAUSE WE COULD CERTAINLY
TAKE THE SAME APPROACH IN A
REHABILITATION CONTEXT.
WE HAVEN'T DONE THAT YET BUT WE
THINK THAT WITH THE CHALLENGES
OF RURAL HEALTH FOR EXAMPLE AND
THERE'S SO MANY PLACES THAT
PEOPLE DO NOT HAVE ADEQUATE
ACCESS TO CARE.
THAT THIS WHOLE APPROACH OF
HAVING A CHALLENGE AND HAVING
INNOVATORS DEVELOP REMOTE
MONITORING OF PATIENTS
POTENTIALLY WOULD BE RELEVANT
FOR THE REHABILITATION PATIENTS.
SO JUST EXAMPLES THE COMPANY
THAT WON THE FIRST -- THE
COMMUNITY ORGANIZATION THAT WON
THE FIRST PRIZE IS NURTURELY,
WHICH WAS FOCUSSED ON PROVIDING
SUPPORT TO BLACK BIRTHING
PARENTS AND PROVIDING A
CULTURALLY INFORMED INTERVENTION
TO IMPROVE POSTPARTUM HEALTH
OUTCOMES INCLUDING INCREASING
RATES OF LACTATION, DECREASING
RATES OF DEPRESSION.
SECOND PLACE WENT TO CENTRAL
JERSEY FAMILY HEALTH CONSORTIUM
WHICH AGAIN IS TAKING A
COMMUNITY-BASED APPROACH AND
DEVELOPING A MEDICAL COMPLEXITY
RISK ALGORITHM TO IDENTIFY
PEOPLE WHO ARE AT RISK FOR
SEVERE MATERNAL MORBIDITY BY
ANALYZING CLAIMS DATA.
I THINK I'LL SKIP THIS IN THE
INTEREST OF TIME.
AND THE RADX TECH CHALLENGE.
WE HAD SIX GRAND PRIZE WINNERS
WHO HAD DEVELOPED TECHNOLOGIES
TO ADDRESS CARDIAC FUNCTION,
BLOOD PRESSURE, THE PRESENCE OF
POSTPARTUM HEMORRHAGE.
WAS THERE ANEMIA IN THE
POSTPARTUM PERSON AND A
DIAGNOSTIC FOR URINARY TRACT
INFECTION.
ADDRESSING BLOOD PRESSURE AND
OVER ALL CARE MANAGEMENT.
IN ANOTHER AREA JUST TO FOCUS
ON POPULATION WE ARE SUPPORTING
RESEARCHERS THROUGH THE RECOVER
INITIATIVE WHO ARE FOCUSED ON
SYMPTOMS AND MORBIDITIES
ASSOCIATED WITH LONG COVID.
IF YOU HADN'T SEEN THIS JAMA
PUBLICATION IT'S A VERY DETAILED
CHARACTERIZATION OF THE SYMPTOMS
EXHIBITED BY CHILDREN AND
ADOLESCENTS SHOWING THIS IS A
NATURAL HISTORY STUDY USING BIG
DATA BUT SHOWING THAT THE
SYMPTOMS THAT ARE EXPERIENCED AT
DIFFERENT AGE GROUPS ARE
VARIABLE AND DIFFER
SIGNIFICANTLY FROM ADULTS.
HOPEFULLY KNOWING ABOUT THIS
WILL LEAD TO INNOVATIVE
OPPORTUNITIES FOR TREATMENT.
AND THEN ONE OF DR.
BERTAGNOLLI'S SIGNATURE PROGRAM
IS CALLED CARE FOR HEALTH, AN
ACRONYM FOR COMMUNITIES
ADVANCING RESEARCH EQUITY FOR
HEALTH.
AND THIS IS A PILOT PROGRAM
THAT'S ROUTINE CARE IN PRIMARY
CARE SETTINGS.
THERE WERE LISTENING SESSIONS
THAT OCCURRED LAST SUMMER AND
THEY INCLUDED HOSPITALS, PRIMARY
CARE PROVIDERS AND ORGANIZATIONS
AND COMMUNITY ORGANIZATIONS AS
WELL AS FEDERAL AGENCIES.
WE PARTICIPATED IN SOME OF THESE
DISCUSSIONS AND THE GOALS ARE TO
BUILD SUSTAINABLE AND EFFECTIVE
BI-DIRECTIONAL PARTNERSHIPS,
TAILORING INDIVIDUAL COMMUNITIES
MUCH IN THE SAME WAY WE TAILOR
THE COMMUNITY CHALLENGES FOR
MATERNAL HEALTH.
ACCOUNTING FOR PROVIDER NEEDS IN
RESEARCH INTEGRATION, PRIMARY
CARE PROVIDERS ARE SO BUSY, HAVE
SO LITTLE TIME TO EVEN DO A
HISTORY AND PHYSICAL AND NOW
WE'RE ADDING RESEARCH TO THEIR
JOB DESCRIPTION AND HOW CAN WE
SUSTAIN THIS RESEARCH PROGRAM.
SO AN INITIAL $30 MILLION WAS
GIVEN AS PART OF THE COMMON FUND
BUDGET WITH A FOCUS ON RURAL
COMMUNITIES AND THE DECISION WAS
MADE TO GIVE FUNDS TO THREE
DIFFERENT ORGANIZATIONS, OREGON
HEALTH AND SCIENCES UNIVERSITY,
UNIVERSITY OF WISCONSIN-MADISON
AND WEST VIRGINIA AND WE
SUGGESTED TOPICS FOR OUR
POPULATIONS AND EVALUATING A
BEHAVIORAL INTERVENTION FOR
CHRONIC HIGH IMPACT BACK PAIN TO
REDUCE PAIN MANAGEMENT AND
REDUCE RELIANCE ON PRESCRIPTION
PAIN MEDICATIONS AND TESTING A
COLLABORATIVE TREATMENT
MEDICATION TO ADDRESS OPIOID AND
POLY SUBSTANCE USE AND
EVALUATING INTERVENTIONS FOR
GOUT FLARE, PREVENTION AND/OR
TREATMENT.
SO JUST IN CLOSING I WANTED TO
GIVE YOU A BRIEF UPDATE ON THE
2025 STRATEGIC PLAN.
SO, THE OVER ALL SCIENTIFIC
THEMES REMAIN THE SAME.
HOWEVER SOME OBJECTIVES WILL BE
UPDATED.
SO WITHIN EACH THEME ARE GOALS
AND OBJECTIVES AND THE
OBJECTIVES WILL REFLECT CHANGES
IN SCIENCE, CHANGES IN PUBLIC
HEALTH FOCUS AND CHANGING
PRIORITIES IN GENERAL.
WE'VE MADE SOME DECISIONS THAT
ARE INFORMED BY EVIDENCE SO
NICHD WORKING GROUPS LED THE
PROCESS OF REFRESHING THE
STRATEGIC PLAN AND THEY HAVE
BEEN CONSIDERING UPDATES AND
PRESENTING THEM TO THE
LEADERSHIP TEAM FOR INPUT.
AND PART OF IT HAS BEEN A
DETAILED REVIEW OF THE
IMPLEMENTATION PLAN.
SO, IF WE SAID WE WERE GOING TO
DO SOMETHING, DID WE ACTUALLY DO
IT.
SO WE'VE BEEN ANALYZING THAT
RETROSPECTIVELY.
EACH WORKING GROUP RECEIVED
INFORMING ON THE TIME LINES OF
THE MAJOR PROGRAMS AND FUNDING
OPPORTUNITY ANNOUNCEMENTS THAT
SUPPORTED THE IMPLEMENTATION
PLAN AND THEN THE FUNDING TRENDS
ON RESEARCH INITIATIVES AND
ACTIVITIES AND INFORMATION ON
THE CROSS-CUTTING THEME
REPRESENTATION AND THE GOAL.
SO FOR EXAMPLE HERE IS THEME
FIVE, FOUNDATIONAL RESEARCH FOR
PRECISION MEDICINE.
ONE OF THE PRIORITY ACTIVITIES
HAD AN INCREASE IN GREATER THAN
20% FROM THE BASELINE.
ONE WAS WITHIN 20% OF BASELINE
AND ONE DECREASED.
YOU CAN SEE IT'S A LITTLE HARD
FOR ME TO READ BUT THE ONE THAT
INCREASED WAS TRANSPORTERS.
THE ONE THAT STAYED THE SAME WAS
DRUG METABOLISM ENZYME AND THE
ONE THAT DECREASED WAS DISCOVERY
TOWARDS PRECISION MEDICINE.
SO WE'RE REALLY TAKING AN
EVIDENCE BASED APPROACH TO
SEEING DID WE PUT MONEY WHERE
OUR MOUTH WAS IN 2020.
WE'VE ALSO GOTTEN INPUT FROM OUR
EXTRAMURAL FUNDED RESEARCHERS.
WE HAD EXTERNAL CONVERSATIONS ON
DRAFT CONCEPTS AND HAD A REQUEST
FOR INFORMATION PUBLICATION AND
WE HAVE GOTTEN NICHD COUNCIL
FEEDBACK.
FOR EXAMPLE, ONE THING THE
COUNCIL BROUGHT UP IN SEPTEMBER
WAS THE FACT THAT WE DIDN'T
REALLY SAY ANYTHING ABOUT
ARTIFICIAL INTELLIGENCE AND I
THINK THAT WAS A MAJOR GAP THAT
WAS VERY HELPFULLY POINTED OUT
BY OUR ADVISORY COUNCIL.
SO, IN CLOSING I JUST WANT TO
GIVE A MOMENT OF APPRECIATION
AND I WANTED TO PUBLICALLY THANK
DR. KATHLEEN ZAKOWSKI'S
REPRESENTATION ON THE BRAIN
MULTI-COUNCIL WORKING GROUP.
KATHLEEN IS A MEMBER OF THE
NATIONAL ADVISORY BOARD OF
REHABILITATION RESEARCH AND HAS
BEEN REPRESENTING NICHD.
YOU PROBABLY KNOW SHE'S SOCIETY
VICE PRESIDENT OF RESEARCH FOR
THE MULTIPLE SCLEROSIS SOCIETY.
KATHL
KATHLEEN, JUST WANTED TO THANK
YOU FOR DEVOTING YOUR TIME TO
THIS IMPORTANT WORKING GROUP.
I THINK THAT IS IT.
NEXT SLIDE IS A THANK YOU TO
EVERYONE AND HAPPY TO ADDRESS
QUESTIONS.
>> THANK YOU SO MUCH,
DR. BIANCHI.
ANY QUESTIONS EITHER ONLINE OR
AROUND THE TABLE?
>> THANK YOU SO MUCH.
THAT WAS AN INTERESTING UPDATE.
YOU TALKED A LITTLE BIT ABOUT
RETHINKING HOW WE TALK ABOUT
OUTCOMES AT THE BEGINNING OF THE
TALK AND I NOTICED YOU TALKED
ABOUT OTHER CAREER CHOICES BUT
DIDN'T MENTION A FOUNDATION OR
NON FOR PROFIT.
>> GREAT POINT MADE.
SORRY THAT WAS AN OMISSION.
YES, NONPROFITS.
THE POINT WAS ACADEMIA IS NOT
THE ONLY OPPORTUNITY.
>> WE'VE BEEN THINKING ABOUT IT
OURSELVES.
WE FUND RESEARCH TO A SMALLER
EXTENT THAN THE NIH BUT SEE THIS
AS A MAJOR ISSUE TOO AND HAPPY
TO SEE IT WAS INCLUDED.
I WASN'T JUST TRYING TO CALL YOU
OUT.
I THINK IT'S A GREAT IDEA.
>> VERY IMPORTANT.
THERE'S MANY OPPORTUNITIES WITH
THE TERMINAL DEGREE.
>> I JUST HAD A QUICK QUESTION.
SO SO, IT WAS INTERESTING HOW
YOU WERE SAYING IN TERMS OF THE
NEW INITIATIVES MOST THE THEMES
WERE KEPT THE SAME.
YOU GUYS WERE LOOKING AT THE
START AS WAYS OF USING
EVIDENCE-BASED DATA TO MAKE
DECISIONS ON WHERE YOUR MONEY
WAS GOING.
ONE OF THE THINGS I'VE BEEN
CONCERNED WITH IS THE IDEA OF IS
IT A ZERO SUM GAIN?
IN A SENSE AS YOU INCREASE
FUNDING IN ONE AREA
AUTOMATICALLY ANOTHER AREA
SUFFERS BECAUSE THE PIE IS THE
SAME.
SO INSTEAD OF EVERYTHING
INCREASING, WE JUST KIND OF LIKE
DECIDE WHO GETS THE MONEY AND
ONE SET OF RESEARCH GETS
SACRIFICED OVER THE OTHER.
HOW DO WE PREVENT THAT?
I WORRY THAT THAT OFTEN IS WHAT
SEEMS TO BE HAPPENING.
>> SO THAT IS A GREAT POINT AND
QUESTION.
IT IS A ZERO SUM GAME IN THE
SENSE THAT UNLESS WE GET AN
ADDITIONAL APPROPRIATION FOR AN
AREA WE THEN HAVE TO MAKE DUE
WITH THE BUDGET WE HAVE THOUGH
RIGHT NOW WE DON'T HAVE A BUDGET
SO WE'RE MAKING GUESSES.
AND THE REASON WHY I MENTION THE
IMPROVE INITIATIVE IS WE WERE
ABLE TO GET ADDITIONAL FUNDING
THAT GOES TO OUR BASE.
SO THERE ARE OCCASIONALLY TOPICS
THAT ARE NOT PART OF THE ZERO
SUM GAME THAT GET ADDED TO OUR
BUDGET.
I DON'T KNOW WHY MY VIDEO JUST
DISAPPEARED.
I DIDN'T TOUCH ANYTHING.
I'M GLAD THAT DIDN'T HAPPEN IN
THE MIDDLE OF THE PRESENTATION.
ANYWAY, IT'S ZERO SUM GAME
UNLESS WE HAVE AN ADDITIONAL
APPROPRIATION.
YOU'RE RIGHT, UNLESS WE GET THAT
APPROPRIATION WE HAVE TO MAKE
DIFFICULT DECISIONS AND THAT'S
THE HARDEST PART OF OUR JOBS IS
TO DECIDE WHAT MERITS THE
INVESTMENT OF OUR FUNDS.
THAT BEING SAID, THERE'S A
CERTAIN PERCENTAGE OF OUR BUDGET
THAT IS FIXED FOR NCMRR AND WE
TRIED TO FIX CERTAIN PERCENTAGE
OF OUR BUDGET FOR TRAINING FOR
CAREER DEVELOPMENT AND TRAINING
AND A CERTAIN PERCENT AND FOR
OUR TRAINING PROGRAM BUT
EVERYTHING LEVEL IS SUBJECT TO
INTERPRETATION.
IT'S VERY DIFFICULT.
ONE OF THE THINGS WE'VE DONE IN
THE PAST FIVE TO EIGHT YEARS IS
WE NO LONGER FUND GRANTS THAT IS
BASED EXCLUSIVELY ON THE
PRIORITY SCORE AND HAVE I A ZONE
OF CONSIDERATION IN LOOKING AT
HOW THE PROPOSED RESEARCH ALIGNS
WITH OUR STRATEGIC PLAN.
THAT'S ONE WAY WE WOULD CONSIDER
HOW DO WE DEAL WITH THE FIXED
BUDGET.
I DON'T KNOW, THERESA, DO YOU
WANT TO ADD ANYTHING TO THAT?
>> I WOULD JUST ADD -- THANK
YOU, THE OTHER THING WE DO IS
LOOK AT HOW MUCH MONEY AN
INDIVIDUAL INVESTIGATOR GETS.
IT MIGHT BE THE SAME AMOUNT OF
MONEY IN A TOPE IC AND MAYBE
SPREAD OUT TO MORE P.I.s AND
LABS AND HAVE A COUNCIL TO
REVIEW P.I.s WHO ALREADY HAVE
OVER $1 MILLION IN FUNDING AND
EACH INSTITUTE HAS A SIMILAR
TYPE OF LINE THEY ARE TAKE AN
EXTRA LOOK AT THOSE GRANTS TO
SEE IF THERE'S A WAY TO SPREAD
THE WEALTH AMONG P.I.s.
>> DID THAT ANSWER YOUR
QUESTION?
>> YES, THANK YOU VERY MUCH.
>> THIS IS TIFFANY YU.
THE ONE IS A FOCUS ON PEDIATRIC
RESEARCH AND WOULD ADVOCATE TO
ENSURE THERE'S ALSO MENTAL
HEALTH AND EMOTIONAL SUPPORT FOR
THE PEOPLE WHO ARE COMPETING IN
THE CLINICAL TRIALS AND
POTENTIALLY SOME FOR PART OF THE
RESEARCH.
I'D BE CURIOUS IF THEY'RE
TRACKED TO ADULTHOOD AND IF
BEING PRODDED AS KIDS HAS
OUTCOMES AND THERE'S THE FIRST
THING AROUND THE PEDIATRIC
RESEARCH.
A COMMENT AROUND REPRODUCTIVE
HEALTH.
I WOULD ASSUME THAT YOU PROBABLY
DON'T DO AS MUCH ADVOCACY BUT
REMIND PEOPLE HERE AND LISTENING
IT'S STILL FORCED STERILIZATION
OF DISABLED PEOPLE IS STILL
LEGAL IN 30 STATES AND MAKE SURE
THERE'S NOT A LARGE PORTION OF
OUR POPULATION LEFT BEHIND.
>> OKAY.
I WROTE IT DOWN.
YOU ASKED ABOUT THE MENSTRUAL --
MENTAL HEALTH OF THOSE INVOLVED
WITH CLINICAL TRIALS IN CHILDREN
THAT REVIEWERS LOOK AT THAT.
I CAN ONLY SPEAK FOR THE
INTRAMURAL PROGRAM AND CLINICAL
RESEARCH PROGRAM AND MREEFRD TO
SAY TWO CHILD HEALTH SPECIALISTS
HAVE BEEN ADDED TO THE STAFF OF
THE CLINICAL CENTER -- PLEASED
TO SAY.
THEY'RE CHILD LIFE SPECIALISTS
AND PAYING CLOSE ATTENTION TO
THE MENTAL HEALTH AND OVER ALL
WELL BEING OF THE CHILDREN WHO
ARE HOSPITALIZED AS PART OF
THEIR PROTOCOLS.
WE HAVE THE CHILDREN'S INN WHERE
FAMILIES CAN STAY FOR FREE WHILE
THEIR CHILDREN ARE PARTICIPATING
AS INPATIENTS OR OUT PATIENTS
AND THAT PLACE IS LIKE A RONALD
McDONALD'S ON STEROIDS.
YOU WOULD NOT BELIEVE THE KINDS
OF ACTIVITIES THEY HAVE TO
ENGAGE THE CHILDREN AND EDUCATE
THEM AND MAKE IT AN OVER ALL
PLEASANT EXPERIENCE.
THE SECOND THING YOU MENTIONED
WAS TRANSITION TO ADULT HEALTH.
THAT WAS IDENTIFIED FIRST, IN
THE FIRST STRATEGIC PLAN WE
RECOGNIZED ADOLESCENCE IN
GENERAL WAS A GAP AND ADDED THAT
AS A THEME AND FOCUSSED ON THE
SIGNIFICANT GAP FOR CHILDREN
WITH CHRONIC ILLNESS OR CHRONIC
CONDITIONS HOW THEY MAKE THE
TRANSITION FROM BEING A
PEDIATRIC PATIENT TO BEING AN
ADULT PATIENT.
AND WE HELD A WORKSHOP OWN THAT
AND WE'RE NOW FUNDING RESEARCH
GRANTS RELATED TO TRANSITION.
AND OUR JOB IS TO GENERATE
EVIDENCE THAT INFORMS PEOPLE WHO
MAKE POLICY.
WE -- I FORGET THE EXACT TERM
BUT WE'RE NOT IN A SITUATION
WHERE WE'RE ADVOCATES OR
NON-ADVOCATES.
WE ARE TRYING TO PROVIDE THE
SCIENTIFIC EVIDENCE AND
REPRODUCTIVE HEALTH IS A MAJOR
PART OF WHAT WE DO.
OUR NAME DOESN'T COMMUNICATE
THAT IN THE WAY WE COMMUNICATE
WE'RE THE LOCUS FOR MEDICAL
REHABILITATION RESEARCH.
BUT WE'RE VERY FOCUSSED ON
REPRODUCTIVE HEALTH AND AGAIN
WAYS WE CAN PROVIDE EVIDENCE AS
TO HOW SOME OF THE CHANGES THAT
HAVE OCCURRED OVER THE LAST FEW
YEARS ARE IMPACTING ON INFANT
MORTALITY, MATERNAL MORTALITY,
FOR EXAMPLE.
IT'S PART OF THE REPRODUCTIVE
JUSTICE ECO SYSTEM BUT WITH A
BASIS ON SCIENTIFIC EVIDENCE.
DID I CAPTURE YOUR QUESTIONS
CORRECTLY?
>> YES, THANK YOU.
>> THIS SOUND LIKE JEREMY WITH
AN "F".
THERE'S MORE PROFESSIONS NOT
JUST AC 2K50ADEMACADEMIA.
THIS IS A COMMENT OF PEOPLE WHO
REMAIN WITHIN ACADEMIA AND OFTEN
THE TIME WE SUPPORT AND PROMOTE
FACULTIES IS IN A RIGID
FRAMEWORK OF WHAT CAN BE FUNDED.
IF WE WANT TO DEMONSTRATE
THERE'S PROFESSIONS OUTSIDE OF
ACADEMIA SOME REMAN IN ACADEMIA
WITHIN THE COMMUNITY THAT COULD
HAVE MORE OPPORTUNITIES FOR
FUNDING IF THE WAY FUNDING IS
ALLOCATED SINCE THERE MAY NOT BE
AN ADDITIONAL ALLOCATION AND
SOME OF US FOCUS ON
COMMUNITY-BASED OR PARTICIPATORY
RESEARCH HAS NOT HISTORICALLY
BEEN THE MECHANISM THAT HAS LED
TO PROMOTION FOR JUNIOR FACULTY
PRIMARILY WITHIN THE PRIMARY
FIELD CARE WHO WANT TO DO THAT
WORK.
>> THAT'S AN EXCELLENT POINT.
I DO SEE TRENDS FROM SOMEONE WHO
CAME FROM A BASIC SCIENCE
TRANSLATIONAL BACKGROUND.
CERTAINLY OVER THE LAST EIGHT
YEARS THERE'S THE RECOGNITION
COMMUNITIES HAVE UNIQUE NEEDS
AND IMPLEMENTATION RESEARCH
FUNDING IN THAT AREA AND THERE'S
AN OVER ALL RECOGNITION AND
ASSUME WE'LL SEE MORE IN THE
COMING YEARS THAT AMERICANS WANT
TO SEE HOW THEIR TAX DOLLARS ARE
GOING AND HOW DOES IT BENEFIT
THEM OR MAKE THEM OR THEIR
COMMUNITIES HEALTHIER.
>> THANK YOU.
>> ON THE COMMENT FROM TIFFANY
WITH MY LIMITED RESEARCH WITH
CHILDREN I FIND VERY IMPORTANT
TO ALSO THINK ABOUT THE PARENTS
PARTICULARLY IN MENTAL HEALTH
BECAUSE IT MAY BE A BARRIER FOR
PARTICIPATION OF CHILDREN IN
STUDIES.
I WOULD LIKE TO SEE MORE
THINKING ABOUT NOT ONLY THE
CHILD CONTEXT BUT THE CONTEXT OF
FAMILY IS VERY IMPORTANT.
I KNOW THAT AND IN MY MIND WOULD
BE GREAT TO HAVE AN INTERVENTION
AND PARENTS.
I THINK THAT WOULD BE VERY
INFORMATIVE.
MY SECOND COMMENT IS THINKING
ABOUT THE STRATEGIC PLAN.
YOU MENTIONED I CAME IN THE
MEETING AND I THINK WE NEED TO
THINK ABOUT TECHNOLOGICAL
CONVERGENCE AND WEARABLES AND
OTHER DEVICES AND INTERFACES.
I THINK WE NEED TO START
HARNESSING AND CONVERGENCE.
THAT WILL BE IMPORTANT TO BE
SPECIFIC ABOUT THAT.
AND NOT ONLY A MATTER OF ASKING
FER SUPPORT AND NEED TO HAVE A
WAY TO MAXIMIZE OUR REACH AND
WHILE COLLABORATING WITH OTHER
PROFESSIONALS GOING BACK TO TEAM
SCIENCE.
>> I DON'T KNOW IF YOU MENTIONED
IT IN THE INTRODUCTION YOU'RE AN
NICHD MEMBER AS WELL AND HAVE A
BROAD OVERVIEW OF NAB AND NICHD
INTERSECT AND WE THANK YOU FOR
YOUR TIME AND SERVICE.
>> THANK YOU FOR SHARING YOUR
TIME WITH US THIS MORNING.
STEVE CRAMER.
I GOT MY FIRST JOB AT AGE 35
AFTER EXTENSIVE TRAINING.
I WAS A REAL GOOD STROKE
NEUROLOGIST AND INTERESTED IN
BRAIN REPAIR AND TWO KIDS AND A
MORTGAGE AND LOW SALARY FOR AN
ACADEMIC.
IT MUST HAVE BEEN IN '98, '99
AND IF IT WASN'T FOR THAT I
WOULDN'T REMAIN AND BIG THUMBS
UP ON THAT AND ON THE SECOND
TOPIC OF OUTCOME.
I THINK OUR OUTCOMES STINK FOR
STROKE AND AS A NEUROLOGIST
THEY'RE SO SO GREAT FOR OTHER
DISEASES BUT I DON'T HAVE
EXPERTISE.
THEY'RE WHAT'S EASY.
MANY FROM ORTHOPEDIC.
SORRY BUT HUMANS DESERVE TO BE
CHARACTERIZED BY MORE THAN A
SINGLE DIGIT.
THEY'RE RANKED IN FEVER AND
STROKE.
IMAGINE YOU GO IN A ROOM AND
ANALYZE A PATIENT EXAMINE THEM
AND DECLARE THREE AND WRITE IT
DOWN AND WALK AWAY.
THERE'S SO MUCH MORE WE CAN DO
IN THE TECHNOLOGICAL ERA AND
WEARABLE HEALTH AND PUSH THAT
WHETHER IT'S THE CARROT OR STICK
AND TALKING ABOUT IT.
TOTALLY AGREE OUR OUTCOMES NEED
REVAMPING AND HOPE WE'LL FIND
MEANS TO DO SO RATHER THAN NOD
OUR HEADS AND AAGREE.
-- AND AGREE.
>> THANK YOU.
>> I HAVE LOTS OF IDEA HOW WE
MIGHT REVAMP THEM FOR WHAT IT'S
WORTH BUT THAT'S NOT MY MAIN
POINT.
>> THANK YOU, WE DO VALUE YOUR
OPINION.
THE REASON I PRESENTED THE RADX
TECH CHALLENGE IS BECAUSE IIS
THIS THERE'S RELEVANCE AND
THERE'S PARALLELS FOR WHAT CAN
BE DONE IN MONITORING A PERSON
WHO IS RECOVERING FROM STROKE,
FOR EXAMPLE.
AS YOU KNOW THE MAJORITY OF
STROKE-RELATED RESEARCH IS
COMING FROM NINDS HOWEVER WE'RE
VERY ALARMED BY THE INCREASING
RATE OF POSTPARTUM STROKES IN
WOMEN WHO ARE YOUNG AND HAD A
STROKE AFTER CHILD BIRTH AND
WHERE OUR FOCUS AND NINDS' FOCUS
INTERSECT.
>> RALPH YOU HAVE A QUESTION?
>> I THINK SOME OF THE
DISCUSSION IS REVOLVING AROUND
THE EXISTENTIAL TENSION WE HAVE
BETWEEN ACADEMIC RESEARCH, WHICH
DRIVES A LOT OF THE NIH-PEER
REVIEW SYSTEM AND THE CONTEXTUAL
ASPECT THESE ARE HUMANS AND
FAMILIES AND NICHD IS VERY
SENSITIVE TO THAT WITH
INITIATIVES TO TRY TO REMIND
PEOPLE ABOUT THE BROADER CONTEXT
INCLUDING THINGS LIKE INCLUDING
PEOPLE WITH LIVED EXPERIENCE IN
RESEARCH STUDIES, TRYING TO GET
RESEARCHERS TO THINK BEYOND
THEIR OWN SILOED TRAINING AND
EVEN SOME OF THE SUPPORT
INITIATIVES WE HAVE AND I THINK
MICHELLE'S QUESTION HOW WE
SUPPORT RESEARCH -- NIH TAKES A
LOT OF IT'S A MERITOCRACY AND WE
USE THE DISCRETION IN RESEARCH
INITIATIVES WHEN WE SEE A BLIND
SPOT IN ACADEMIC RESEARCH.
SO I THINK YOU GUYS ARE RIGHT AT
THE HEART OF WHAT WE ARE TRYING
TO DO HERE WHICH IS VERY MUCH IN
YOUR ROLE AS AN ADVISORY BODY.
>> AS PEPE KNOWS WE INCLUDE THE
VOICE OF THE PARTICIPANT.
THE PATIENT AND FAMILY IS NEVER
FAR FROM OUR MIND AND NOW
INCLUDING THAT IN THE ANNUAL
INTRAMURAL RESEARCH SYMPOSIUM
WHERE THE INTRAMURAL RESEARCHERS
PRESENT THEIR RESEARCH AND THIS
YEAR WE HAD AN 11-YEAR-OLD GIRL
WHO HAD AN ERROR OF METABOLISM
AND HER PARENTS TALKED ABOUT
LOSING THEIR FIRST COUPLE OF
CHILDREN TO CARDIOMYOPATHY IN
INFANCY AND HAD AN 11-YEAR-OLD
GIRL WHO BENEFITTED FROM ALL THE
KNOWLEDGE.
THESE VOICE OF THE PARTICIPANT
SESSIONS GROUND EVERYONE IN THE
INSTITUTE.
I HEAR REPEATED LY FROM
ADMINISTERIAL SUPPORT STAFF
BECAUSE IT'S INSPIRATIONAL AND
DEMONSTRATES THE HUMAN ASPECT OF
WHAT WE DO.
>> FERANMI.
>> I WANT TO HIGHLIGHT THE
IMPORTANCE OF MAKING SURE
THROUGH THE CONTINUUM WE'RE
PROVIDING THE ACCOMMODATIONS
PEOPLE NEED TO BE SUCCESSFUL IN
THE SPACE BECAUSE THE
11-YEAR-OLD GIRL CAN DO WHATEVER
SHE WANTS GROWING UP BUT WITHOUT
PROVIDING REASONABLE
ACCOMMODATIONS TO DEMONSTRATE
THEY'LL BE ABLE TO MAKE
MEANINGFUL CHANGE IN SOCIETY SO
THAT'S NOT REALLY A CRITICISM
SUSPECT AN OPPORTUNISTIC TIME TO
SAY THAT BECAUSE WE SEE THE
STORIES AS INSPIRATIONAL BUT AS
WE DO BETTER WITH OUR
REHABILITATION RESEARCH WE'LL
HAVE MORE INDIVIDUALS WITH
DISABILITIES WHO WILL NEED
RELATED ACCOMMODATIONS TO HAVE
ACCESS TO DEMONSTRATE THEY CAN
ACHIEVE.
THE ACCOMMODATION IS NOT THE
TICKET TO SUCCESS.
THE ACCOMMODATION IS MERELY
ACCESS AND AFTER BEING GIVEN
EQUITABLE ACCESS CAN SOMEONE
DEMONSTRATE THEIR SUCCESS TO
POINT OUT TO THE GROUP.
>> IT'S WELL TAKEN.
THAT'S A GREAT WAY TO END THE
SEGMENT.
I'M SURE DR. CRUZ WILL TALK
ABOUT ACCESSIBILITY.
THANK YOU.
I'LL LISTEN TO HER TALK.
>> WE'LL MOVE ON DR. CRUZ'S
REPORT FOR ACCESS TO NCMRR.
>> WE'RE OFF TO A GREAT START
AND GREAT CONVERSATION.
I HOPE WE HIT ON YOUR COMMENTS
IN MULTIPLE PRESENTATIONS TODAY.
IF YOU DON'T HEAR IT NEXT, WAIT
UNTIL THE AFTERNOON.
SKA
>> FERANMI IS A COMMUNITY
ACTIVIST IN HIS POSITION.
>> I HOPE TO TALK ABOUT STAFFING
AT NCMRR AND COLLABORATION.
UPDATES FROM OUR MAY BOARD
MEETING.
WE WANT YOU TO KNOW WE TAKE
YOUR INPUT SERIOUSLY AND MAKE
CHANGES BASED ON THAT AND END
WITH SCIENCE ADVANCES.
THAT'S THE FUN PART.
SO, WE BROUGHT ON A NEW PROGRAM
ANALYST.
CHRIS, WAVE.
HE COMES TO US WITH A Ph.D. IN
BIOENGINEERING FROM UNIVERSITY
OF PITTSBURGH AS WELL AS POSTDOC
IN ANIMAL PHYSIOLOGY WORK.
HE STARTED ABOUT A MONTH AGO,
NOT QUITE, AND ALREADY MAKING A
DIFFERENCE IN THE CENTER SO
SUPER EXCITED TO HAVE HIM ON
BOARD.
AND THEN WE HAD A SUMMER
STUDENT.
I WANTED TO ACKNOWLEDGE DANIEL.
I DON'T KNOW IF YOU'RE WATCHING
BUT IT WAS NICE HAVING A SUMMER
STUDENT HELP US WITH SOME
SMALLER THINGS AROUND THE
OFFICE.
AND IT WOULD BE REMISS OF ME NOT
TO ACKNOWLEDGE ALICIA ROSS WHO
HELPED GETTING EVERYONE
ONBOARDED AND UP TO SPEED SO
THANK YOU AS WELL.
SO, THE MAJOR REQUEST FOR
APPLICATIONS THAT WE HAVE HAD IN
THE PREVIOUS FISCAL YEAR WAS OUR
RFA ON ABLISM LOOKING TO
UNDERSTAND AND MITIGATE HEALTH
DISPARITIES CAUSED BY ABLISM.
THOSE AWARDS WERE MADE AT THE
END OF FISCAL YEAR 2024.
I CAN'T TELL YOU HOW WILDLY
SUCCESSFUL THIS WAS BASED ON THE
NUMBER OF APPLICATIONS THAT CAME
IN, THE COLLABORATIVE NATURE OF
THIS PROJECT.
WE HAD PLANNED TO FUND TWO RO1s,
10 ENDED UP BEING FUNDED BECAUSE
OF THE DEMAND AS WELL AS THE
FINANCIAL CONTRIBUTIONS OF OTHER
PARTS OF NICHD.
SO A SPECIAL THANK YOU TO
DR. BIANCHI FOR ADDING TO OUR
POT.
THE NATIONAL EYE INSTITUTE
PICKED UP THREE AND ONE OF THING
OFFS -- OFFICES IN THE OFFICE OF
THE DIRECTOR AND BEHAVIORAL AND
SOCIAL SCIENCE RESEARCH WERE
ABLE TO CONTRIBUTE SIGNIFICANT
CO-FUNDING.
SO 10 RO1s GETS YOU CLOSE TO $30
MILLION.
SOME OF THE TOPICS THAT ARE
GOING TO BE ADDRESSED INCLUDE
THINGS LIKE DIAGNOSTIC
OVERSHADOWING WAYS TO MEASURE
AND DISMANTLE STRUCTURAL ABLISM
AND LAWS LIKE ORGAN TRANSPLANTS
AND PREGNANCY AND CHILD BIRTH
OUTCOMES.
IT'S BEEN A LONG STANDING
INTEREST OF NICHD AND NOW WE'RE
EXPANDING THAT REACH.
WHAT OTHER BARRIERS ARE FACED BY
PEOPLE WITH INTELLECTUAL
DISABILITIES, MOBILITY
DISABILITIES AND LOW VISION WHEN
THEY INTERACT WITH THE HEALTH
CARE SYSTEM.
AND THEN WE MENTIONED THE
IMPORTANCE OF CAREGIVERS AND
EDUCATORS.
SOMETIMES THEY COME IN WITH
ABLIST BELIEFS.
HOW CAN WE DEVELOP INTERVENTIONS
TO ADDRESS THEIR ABLISM TO HELP
CHILDREN WHO ARE IN THE CASE FOR
BLIND AND VISUALLY IMPAIRED.
SO, INCREDIBLY THRILLED WITH
THIS PROGRAM SO FAR.
WE'RE MEETING WITH ALL THE P.I.s
ON FRIDAY.
BIG SHOUT OUT TO TOIAN BEHIND ME
WHO HAS DONE ALL THE HEAVY
LIFTING ON THIS AND TO COMMENT
THAT WE HAD A REQUIREMENT FOR A
SPECIAL ATTACHMENT THAT WAS A
PLAN FOR INCLUDING LIVED
EXPERIENCE.
WE THOUGHT IT WAS ESPECIALLY
IMPORTANT FOR THE TOPIC AND
WORKED WELL WITH OUR PEER REVIEW
TO MAKE SURE THERE WERE PEOPLE
WITH THOSE LIVED EXPERIENCES AT
THE REVIEW.
WE'LL CHECK IN WITH YOU ALL ON
THIS BUT IT'S BEEN AT LEAST A
COUPLE YEARS SINCE WE STARTED
TALKING ABOUT THIS PROGRAM WITH
YOU ALL AND GETTING YOUR INPUT.
PLEASED TO SEE IT'S AT THIS
POINT.
OTHER PEOPLE THOUGHT IT WAS
INTERESTING TOO AND WE DID GET
POPULAR PRESS ON THAT, WHICH WAS
NICE AND AN INTERVIEW WITH STAT
NEWS IF YOU'RE INTERESTED IN
SEEING THAT.
THE OTHER THING IS THE
DISABILITY PRIZE CHALLENGE.
WHEN PEOPLE WITH DISABILITIES
WERE NAMED A POPULATION THAT
EXPERIENCES HEALTH DISPARITIES
WE WANTED TO LOOK TO THE OTHER
PROGRAMS AT NIH THAT SUPPORT
HEALTH DISPARITIES WORK AND
LEARN FROM THEM.
AND ONE OF THE FIRST THING YOU
REALIZE IS THAT IF YOU'RE NOT
DOING COMMUNITY ENGAGED WORK
THEN YOU'RE NOT GOING TO BE
MAKING MUCH OF A DIFFERENCE.
WE WANTED TO BUILD TRUST AND
WITH COLLEAGUES AT THE NATIONAL
EYE INSTITUTE, NATIONAL
INSTITUTE ON DEAFNESS AND
COMMUNICATION DISORDERS AND
MUSCULOSKELETAL AND SKIN
DISORDERS AND OUR DIRECTOR AND
COLLEAGUES AT ACL AND NIDELER WE
PULLED OUR RESOURCES AND IT WAS
ONLY ONLY OPEN TO 501
3C ORGANIZATIONS.
IT CLOIFD LAST MONTH AND SO THE
APPLICATIONS ARE STILL BEING
REVIE
REVIEWED.
I DON'T HAVE WINNERS YET BUT THE
PLAN IS TO HAVE WINNERS WITH AN
INITIAL POT OF MONEY AND WORK
WITH THEM IN THE NEXT YEAR AND
SEE HOW THEY'RE ABLE TO
IMPLEMENT THEIR IDEAS AND
ADVANCE THEIR OFFERINGS.
WE'LL HAVE A FINAL SET OF PRIZES
AT THE END OF THE BEGINNING OF
'26.
WE'LL BRING THEM IN OR HAVE A
VIDEO.
WE WANT TO GIVE THEM AN
OPPORTUNITY TO TALK ABOUT THE
WORK THEY'RE DOING.
A HUGE COLLABORATIVE EFFORT.
NONE OF THIS HAPPENS WITHOUT
HELP FROM OUR SISTER AGENCIES.
I'LL FOLLOW UP WITH YOU AT THE
END OF THIS MEETING WITH THIS
LINK.
IT WILL BE IN THE NEWSLETTER OF
COURSE, AS WELL, BUT IT WILL BE
IN PERSON IN BETHESDA.
HOPE YOU CAN JOIN US.
WE'LL HAVE A GOOD PORTION OF IT
VIDEOCAST SO IF COMING TO MAUR
-- MARYLAND IS NOT IN THE CARDS
YOU CAN PARTICIPATE WITH MOST
THE CONFERENCE.
MANY HAVE BEEN HELPING TO PLAN
THIS.
THANK YOU SO THE MEMBERS OF THIS
BOARD WHO HAVE GIVEN US
ASSISTANCE ON THAT.
THIS IS A TEASER.
I NOTICED DR. SCHWETZ HAS JOINED
AND ADAM POLITEIS WILL GIVE A
LONGER PRESENTATION THIS
AFTERNOON BUT NIH RECENTLY STOOD
UP A RESEARCH COORDINATING
COMMITTEE AND THIS IS OUT OF THE
OFFICE OF THE DIRECTOR.
BROADER THAN WHAT WE DO AT
NCMRR.
IF YOU'RE NOT FAMILIAR WITH THE
DIVISION OF PROGRAM
COORDINATION, PLAN AND STRATEGIC
INITIATIVES, DDPIPSI AND THAT'S
WHERE THE OFFICE FOR NIH ARE
SITUATED THE OFFICE OF RESEARCH
ON WOMEN'S HEALTH, OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCES
THE TRIBAL HEALTH RESEARCH
OFFICE, ETCETERA.
AND THEIR ADVISORY COMMITTEE IS
THE COUNCIL OF COUNCILS.
THIS GROUP IS CHAIRED BY A
MEMBER OF DPIPSI AND NIMHD AND
POST THE GROUP'S WORK HAS BEEN
ON COMMUNITY ENGAGEMENT.
I'LL LEAVE THAT AS A TEASER AND
YOU'LL HEAR MORE ABOUT THAT
GROUP THIS AFTERNOON.
WE HAVE COLLABORATIONS WITH IS
THE NATIONAL INSTITUTE ON BIO
MEDICAL IMAGING AND WE SUPPLY
FUNDING FOR A PRIZE IN THEIR
UNDER GRADUATE PRIDES
COMPETITION.
AND IT WENT TO A GROUP OF
STUDENTS IN UTAH WORKING ON A
LOW COST BUT POWERED PROSTHETIC
LIMB.
THEY WERE FEATURED IN THE PRESS
RELEASE FOR THIS.
WE HAVE SUITCASE, WILL TRAVEL.
GETTING BACK IN THE WORLD AFTER
THE PANDEMIC AND WE'RE BACK TO
TRAVELLING AND SOME WERE
CONFERENCES WE HAVE BEEN TO AND
WE HEARD FROM YOU THAT WE NEED
TO START GOING TO NEW PLACES AS
WELL.
I'M EXCITED THAT THIS YEAR WE
WERE ABLE TO SEND JOE TO
PITTSB
PITTSBURGH.
WE'VE BEEN WORKING WITH NIDLER
AND ATTENDED THEIR RESEARCHERS
TRAINING MEETING AND MET WITH
THE ORTHOPEDIC RESEARCH SOCIETY.
MARIA WENT OUT TO THEIR MEETING.
SOMETIMES WE CAN GET NEURO HEAVY
AND WANTED TO GET OUR
POPULATION.
IF THERE ARE OTHER CONFERENCES
YOU THINK THERE'S OTHER
CONFERENCES WE WOULD BENEFIT LET
US KNOW AND WE'RE HAPPY TO
CONSIDER IT AND PUT IT IN THE
ROTATION IF WE CAN.
>> AS PART OF OUR OUTREACH AND
DISCUSSION ABOUT THE NEEDS OF
RESEARCHERS WITH DISABILITYIES
WE'VE BEEN WORKING WITH THE
OFFICE OF RESEARCH MAKING SURE
ALL THE RESOURCES AVAILABLE ARE
KNOWN TO PEOPLE SO THEY CAN ASK
FOR THEM.
ALISON CERNICH OUR DEPUTY
DIRECTOR WE WERE INVITED TO DO A
PODCAST TALKING ABOUT HOW WE CAN
HELP SUPPORT RESEARCHERS WITH
DISABILITIES.
I HAVEN'T LISTENED TO IT BECAUSE
I CAN'T LISTEN TO MYSELF BUT I
DID HAVE OTHER PEOPLE CHECK IT
AND THEY SAID IT WAS OKAY.
SO IT'S BRIEF BUT ON THE OER
PODCAST WEBSITE SO IF YOU WANT
TO HEAR US TALKING ABOUT THAT,
PLEASE TAKE A LISTEN.
AND I WANT TO THANK DAVID POSIT
WHO RUNS THE ALL OF US GRANT
PODCAST FOR HAVING US FOR THAT
SESSION.
A COUPLE MORE UPDATES FROM OUR
MAY MEETING.
SO, WE HAVE A P50, A CENTERS
PROGRAM RFA ON THE STREET.
WE HAVE HAD TO PUSH IT FROM
JANUARY COUNCIL TO MAY COUNCIL.
SO I THOUGHT I MIGHT HAVE A
LITTLE MORE INFORMATION TO SHARE
WITH YOU NOW BUT I DON'T.
SO YOU'LL BE HEARING MORE ABOUT
THIS PROBABLY A YEAR FROM NOW.
THAT'S REALLY ALL I CAN SAY
ABOUT THAT.
THIS IS PROBABLY MY LAST UPDATE
ON THE PRESERVATION REGISTRY.
EXCUSE ME.
THIS WAS A COLLABORATION THAT
BEGAN 2017, 2018 WITH OUR
COLLEAGUES AT THE DEPARTMENT OF
DEFENSE WHERE WE CONTRACTED WITH
MAYO CLINIC TO SET OUT
E.H.R.-BASED QUALITY REGISTRY
AND AFTER FIVE YEARS OF CONTRACT
SUPPORT WE'RE THRILLED TO SAY
IT'S TRANSITIONED TO AN
INDEPENDENT ENTITY AND RAN BY
TLI A NON-PROFIT AND
COLLABORATING WITH THE AMPUTEE
ORGANIZATION OF AMERICA TO
SUPPORT THIS.
I'M SURE THESE NUMBERS ARE OUT
OF DATE BY THIS POINT BUT WE HAD
225 LOCATIONS FROM HOSPITAL
SYSTEMS TO OMP CLINICS AND HUGE
AMOUNTS OF DATA OVER HALF A
MILLION PATIENTS AND $12 MILLION
INDIVIDUAL PATIENT ENCOUNTERS.
AND WE'RE REALLY HOPING THIS
DATA SET CONTINUES TO LIVE AND
GROW AND TO PROVIDE A RESOURCE
FOR THE RESEARCH COMMUNITY IN
IDENTIFYING NEEDS FOR THE PEOPLE
LIVING WITH LIMB LOSS OR
DIFFERENT DEFERENCE.
WE HAVE PARTICIPATED IN SEVERAL
OTHER NIH SUPPORTED CONFERENCES
SINCE MAY.
THE OFFICE OF BEHAVIORAL AND
SOCIAL SCIENCE HOSTED A FUTURE
OF SCIENTIFIC CONFERENCING
WORKSHOP.
IT WAS VERY META.
IT WAS QUITE ENJOYABLE AND THEY
TALKED ABOUT THINGS LIKE
CULTIVATING BELONGING AND
INCLUSION, HOW CAN WE BE
SUSTAINABLE, HOW DO WE DO
NETWOR
NETWORKING WHEN WE DO VIRTUAL
SPACES AND I WAS PLEASED TO HOST
A SESSION ACCESSIBILITY OR
MAKING CONFERENCES WELCOMING AND
ACCESSIBLE FOR PEOPLE WITH
DISABILITIES.
WE HAD GUEST SPEAKERS TALKING
ABOUT MOBILITY, TALKING ABOUT
VISION AND BEHAVIORAL HEALTH
CONSIDERATIONS.
THAT WAS A WONDERFUL OPPORTUNITY
AND IT'S RECORDED AND IF YOU
GUYS WOULD LIKE TO LOOK AT THAT,
I CAN GET YOU THE LINK.
IN SEPTEMBER WE HAD A WORKSHOP
WITH FDA.
THIS WAS MOSTLY RUN BY NINDS AND
THE BRAIN INITIATIVE BUT THEY
TAPPED INTO NCMRR WHEN THEY
WANTED TO KNOW WHO WOULD BE AN
EXPERT TO TALK ABOUT OUTCOMES
FOR BRAIN COMPUTER INTERFACES.
SO THERE'S STILL WORKING ON THIS
BUT AS WE GET CLOSER TO PIVOTAL
TRIALS WE REALLY NEED TO COME TO
AGREEMENT ON WHAT THE CLINICAL
OUTCOME ASSESSMENT MIGHT LOOK
LIKE IN THE BCI STUDY.
AND THEN FINALLY NIH HAS A
DIVERSITY SUPPLEMENT WORKSHOP
AND TOYAN WAS A CHAIR AND HE DID
AN INCREDIBLE JOB PUTTING
TOGETHER THAT AGENDA.
THERE WAS A SATELLITE SESSION TO
INCLUDE PEOPLE WHO ARE SUPPORTED
ON SBFRs OR INTERESTED IN SMALL
BUSINESS.
SO VERY HAPPY WITH THE SUCCESS
OF THAT WORKSHOP.
JUST WANTED TO UPDATE YOU ON A
COUPLE OTHER FEDERAL ACTIVITIES
THAT HAVE BEEN GOING ON.
ONE OF OUR SISTER AGENCIES IN
HHS IS THE AGENCY FOR HEALTH
RESEARCH AND QUALITY.
THEY RECENTLY PUBLISHED AN
SYSTEMATIC EVIDENCE REVIEW
LOOKING AT THE DELIVERY OF
PREVENTIVE SERVICES TO PEOPLE
WITH DISABILITIES, THEIR
DIRECTOR POSTED A BLOG ABOUT
THAT AND THE TITLE OF THAT WAS
AHRQ HIGHLIGHTS THE NEED FOR
RESEARCH FOR DELIVERY OF
PREVENTIVE SERVICES TO PEOPLE
WITH DISABILITIES SO I THINK WE
HAVE SOME WORK TO DO.
I WANT TO THANK THE STAFF AT
AHRQ WHO WERE VERY ENGAGING AND
INVITED NIH TO MANY OF THESE
MEETINGS AND HELP LEARN ABOUT
THE LAND SCAPE.
THE OTHER THING THAT'S BEEN
GOING ON KIND OF AT A FEDERAL
LEVEL HAS BEEN THROUGH THE
OFFICE OF SCIENCE AND TECHNOLOGY
POLICY.
THIS IS PART OF A WHITE HOUSE
OVER THE LAST YEAR THEY HAVE
BROUGHT TOGETHER PEOPLE FROM
MANY AGENCIES.
ONCE THAT NIH DOESN'T ALWAYS
TYPICALLY INTERACT WITH TO TALK
ABOUT THEIR COLLECTION OF
DISABILITY DATA AND HOW WE CAN
IMPROVE EQUITY IN THE DELIVERY
OF SERVICES.
I DON'T KNOW WHAT'S GOING TO
HAPPEN WITH SOME OF THESE WITH
THE CHANGE OF ADMINISTRATION BUT
HAVE A COMMUNITY OF PRACTICE
I'LL CALL IT THAT IS VERY
INTERESTED IN CONTINUING TO
MEET.
AND THEY HAVE ALSO BEEN
PROMOTING DIGITAL ACCESSIBILITY
OF SCIENTIFIC AND THE TECHNICAL
PUBLICATIONS.
SO BRINGING TOGETHER JOURNALS AS
WELL AS THE NATIONAL LIBRARY OF
MEDICINE AND PUB MED TO TALK
ABOUT WHAT STANDARDS AND WHAT
OFFERINGS WE HAVE AND HOW TO
EXPAND THEM TO MAKE THE PRODUCTS
OF OUR RESEARCH MORE ACCESSIBLE.
MORE TO COME HOPEFULLY BUT
LETTING YOU KNOW THESE ARE HIGH
LEVEL CONVERSATIONS GOING ON.
WE'LL WRAP UP WITH SCIENCE
TOPICS.
I LOVE WHEN THE DIRECTOR'S BLOG
HIGHLIGHTS RESEARCH FUNDED BY
NCMRR OR PART OF OUR REHAB
COMMUNITY.
THIS LOOKED AT THE USING OF
INTERCORTICAL ELECTRODES TO CODE
INTERNALIZED SPEECH.
WE'VE HAD SEVERAL GROUPS LOOKING
AT THE MOTOR PART OF SPEECH
WHETHER YOU CAN DETECT AND
DECODE SPEECH THROUGH THAT PART
OF THE BRAIN AND MIND SPEECH
ETCETERA.
WE HAVEN'T ABLE TO GET AT THE
INTERNALIZED SPEECH UNTIL NOW.
THIS WORK WAS SUPPORTED BY THE
BRAIN INITIATIVE NCMRR WAS OUT
THERE SUPPORTING THIS WORK 20
YEARS AGO.
NANCY SHINOWARA WAS THE
CONTRACTING OFFICER ON STUDIES
20 YEARS AGO.
IT WARMS MY HEART TO SEE WE'RE
MOVING TOWARDS THESE NEW
TECHNOLOGIES.
THE NEXT COMES FROM OUR
COLLEAGUES AT THE NATIONAL
HEART, LUNG AND BLOOD INSTITUTE
PUBLISHED IN JAMA EARLIER THIS
YEAR.
WE KNOW CARDIAC REHAB IS ONE OF
THE MOST EFFECTIVE TREATMENTS WE
HAVE IT'S EXTREMELY UNDER
UTILIZED AND UNDER UTILIZED IN
PEOPLE WITH LOW SES.
THEY WERE LOOKING AT WAYS TO
INCENTIVIZE ADHERENCE TO CARDIAC
REH
REHAB.
THERE'S A FEW GROUPS.
FINANCIAL INCENTIVES, USUAL AND
PERSONALIZED CARE AND
COMBINATIONS OF.
IF YOU COMBINE A PERSONALIZED
APPROACH YOU CAN INCREASE FROM
11% TO 62%.
THESE ARE PATIENTS ABLE TO
COMPLETE AT LEAST 30 SESSIONS OF
CARDIAC REHAN.
-- REHAB.
THE FINANCIAL INCENTIVES WERE
NOT OVERWHELMING.
THEY WERE FAIRLY MODEST I THINK
AROUND $1200 ACROSS THE TIME OF
THE STUDY.
WE HAVE SOME GOOD TOOLS THAT WE
SHOULD BE THINKING ABOUT
ELEMENTING.
AND THE LAST ONE BECAUSE AND IN
NATURE AND MEDICINE THE LAST
AUTHOR IS HUGH HERIT AT M.I.T.
AND ALL THE BELLS AND WHISTLES.
WE HAVE THE COMBINATION OF THE
SURGERY WITH THE
AGONIST/ANTAGONIST MYONEURAL
INTERFACE AS WELL AS THE NEURAL
CONTROLLED PROSTHETIC AND THAT
LED TO FASTER WALKING, BETTER
BALANCE, ABILITY TO CHANGE
SPEED, CLIMB STAIRS, STEP OVER
OBSTACLES.
I'LL TAKE QUESTIONS.
>> AROUND THE TABLE AND ONLINE.
ANY COMMENTS OR QUESTIONS FOR
THERESA.
>> THIS IS TIFFANY YU.
I HAVE THREE COMMENTS THAT ALSO
MAY BE QUESTIONS.
SO THE FIRST IS AROUND THE
COMMUNITY CHAMPIONS PROGRAM --
CHAMPIONS FOR DISABILITY HEALTH
CHALLENGE.
I KNOW IT PLAY BE TOO LATE BUT
EXCITED TO SEE A FOCUS ON LIVED
EXPERIENCE AND MORE
ORGANIZATIONS THAT ARE
DISABILITY LED BUT WANTED TO
HIGHLIGHT THAT A LOT OF THE
BIPOC AND BLACK INDIGENOUS
PEOPLE OF COLOR, DISABILITY LED
ORGANIZATIONS ARE OFTEN LEFT OUT
OF FUNDING OPPORTUNITIES AND NOT
PLATFORMS AND ULTIMATELY CREATE
A LITTLE BIT OF
INTERSECTIONALITY IN TERMS OF
WHO GETS VISIBILITY AND FUNDING
AND OPPORTUNITY.
SOME DISABILITIES MAY HAVE A 14C
WHICH MEANS YOU CAN LEGALLY PAY
SOMEONE BELOW MINIMUM WAGE AND
WE SEE THEM GET MORE FUNDING
BECAUSE OF THESE ROBUST PROGRAM
UNDER THE GUISE OF PAYING
SOMEONE LIKE $2 AN HOUR.
I DON'T KNOW IF THERE'S
DILIGENCE DONE OR CHECKING DONE
IN TERMS OF HOW THESE ARE BEING
AWARDED AND AGAIN WHO WE'RE
PLATFORMING.
AND DIGITAL ACCESSIBILITY AND
PLAIN LANGUAGE FOR PEOPLE WHO
COULD BENEFIT FROM THE RESEARCH
BUT IN SIMPLER LANGUAGE.
WE'
>> WE'RE REALLY CONCERNED ABOUT
PLAIN LANGUAGE AND WE'LL HAVE A
SEPARATE PLAIN LANGUAGE VERSION
BECAUSE VERY MUCH WANT PEOPLE TO
BE ABLE TO RESPOND AND NOT JUST
THE ACADEMICS BUT EVERYBODY.
WE'RE STARTING TO SEE MORE OF
THAT.
WE'RE ABSOLUTELY NOT WHERE WE
NEED TO BE WITH PLAIN LANGUAGE
AND THE LOW WAGES FOR EMPLOYMENT
WE CHOSE TO FOCUS ON HEALTH
DISPARITIES SO THOSE WERE THE
THINGS WE WERE ASKING FOR IN THE
CHALLENGE.
THEN WE HAVE THE RULES LIKE I
WAS WITH BEING ABLE TO AWARD
CHALLENGE DOLLARS.
SO THERE ARE CERTAIN CONSTRAINTS
IN THE LEGISLATION.
THOSE ARE THE THINGS THAT WE ARE
LOOKING AT.
WE HAVEN'T MADE ANY AWARDS YET.
WE'RE STILL PROCESSING BUT I
APPRECIATE -- YEAH.
AND THE INTERSECTIONALITY.
WE WORK CLOSELY -- I WOULD SAY,
WITH OUR OFFICE OF HEALTH EQUITY
AND WITH OTHER PARTS OF NIH THAT
REPRESENT HEALTH DISPARITIES SO
WE TRY TO BRING THEM AS MUCH AS
WE CAN INTO THE CONVERSATION.
SO IT IS SOMETHING TOP OF MIND
AND I HOPE WE ARE SHOWING THAT
BUT AGAIN I APPRECIATE THE
COMMENT.
>> A LARGE PART IS BRAIN
STORMING WITH RESEARCH
APPLICANTS.
WE TRY TO BRING IT UP WITH
PEOPLE WHEN WE'RE LOOKING AT
SOME ACADEMIC ISSUE TO THINK IT
MIGHT PLAY DIFFERENTLY ACROSS
ETHNIC CULTURES AND OPEN UP
THEIR EYES A LITTLE BIT.
I THINK YOU'RE ON THE RIGHT
TRACK.
>> FRANCISCO, QUESTION?
ONLINE?
>> HELLO.
CAN YOU HEAR ME OKAY?
>> YES, WE CAN.
>> IT'S BE AN OPPORTUNITY FOR
ESSENTIALLY A CONNECTION BETWEEN
TWO TOPICS WE'VE BEEN DISCUSSING
AND I'LL START BY SAYING I WAS
ENCOURAGED TO SEE THE WORKSHOP
ON SBIRs AND THE ENTREPRENEURIAL
TRANSLATION WENT WELL THIS IS
SOMETHING WE STARTED DISCUSSING
IN THE FORUM SOME TIME AGO AND
GLAD IT CAME TO FRUITION.
BUT THERE'S A VERY INTERESTING
CONNECTION BETWEEN THAT AND WHAT
STEVE AND PEPE WERE TALKING
ABOUT IN TERMS OF OUTCOME AND
THE NEED FOR REAL USE,
INFORMATIVE OUTCOMES AND TO HAVE
AN OUTCOME MEASURE IN THE
CLIN
CLINIC, ETCETERA MEANS IT'S A
DEPLOYMENT OF A PRODUCT OR
SERVICE.
EVEN IF WE END UP CREATING
BETTER OUTCOME MEASURES FOR
WHICH MANY OF US ARE COMMITTED
TO THE TASK, THE LIKELIHOOD IT
BECOMES A USEFUL CLINICALLY
IMPLEMENTED ACTIVITY CAB TAKE AN
ADVANTAGE OF 17 YEARS.
THAT'S KIND OF THE AVERAGE
TRANSLATION TIME LINE.
I'M INTERESTING IN BRINGING
TOGETHER BETTER OUTCOME MEASURES
BUT HOW DO WE DEPLOY THEM IN THE
REAL WORLD WILL BE A CHALLENGE
THAT WE KNOW IS THERE AND WE
COULD DO SOMETHING NOW TO
ACCELERATE IT.
>> WE'RE DOING BUT IN A WAY TO
INFORM THE DECISIONS THEY HAVE
TO MAKE AT THEIR AGENCIES.
THERE WAS A TALK AT ACRM WEEKS
AGO TALKING ABOUT THIS NEW
OUTCOME MEASURE AND WE HAD A
DISCUSSION THEY HAD WITH THE FDA
HOW TO GET THAT AS A REGISTERED
BIO MARKER.
WE USE IT A LOT BUT IN A WAY
THAT CAN BE USED TO GET A DEVICE
OR THERAPY APPROVED BY FDA.
HAVE YOU GONE THROUGH THOSE
STEPS AND WE WERE LUCKY TO HAVE
PEOPLE FROM FDA IN THE AUDIENCE.
SO THERE WERE ABLE TO CONNECT
AND TALK ABOUT THIS IS WHAT YOU
NEED TO DO TO GET IT TO THE NEXT
STEP.
IT'S NOT ENOUGH TO JUST SAY I
HAVE THIS GREAT BIOMEDICAL OR
DEVICE AND PUT A PAPER OUT.
WE NEED TO DO THAT NEXT STEP.
SO COMPLETELY AGREE.
>> THE GOOD NEWS IS A LOT OF THE
TECHNOLOGIES FOR EXAMPLE THAT
WERE TALKED ABOUT AND WE CAN USE
IN STROKE AND A VARIETY OF
ENVIRONMENTS ARE ALL CLASS 1 AND
ALL FALL WITHIN THE CMS APPROVED
GUIDELINES SO THAT'S THE GOOD
NEWS.
LET'S CONTINUE.
>> THERE'S THREE RESEARCH TALKS
AND BEFORE YOU ROTATE OFF WE
WANT YOU TO TALK ABOUT YOUR OWN
STUFF AND IN ADDITION THERE'S A
SPECIAL TALK AT THE END OF EARLY
TUESDAY AFTERNOON ON COMMUNITY
ENGAGEMENT SPECIFICALLY AN ISSUE
THE BOARD BROUGHT BEFORE US.
I THINK WE'LL CIRCLE BACK TO
THOSE VERY ISSUES.
>> I HAVE A COMMENT ON THE LAST
CONVERSATION WHICH IS MORE JUST
A JAB IF YOU INVITE ME TO A
PLACE WITH A MICROPHONE I'LL BE
MYSELF AND A COUPLE MEANT.
WHAT DO WE DO WITH THE FDA'S
PART AND THERE'S RECALCULAITRAN
FOR THE FIELD OF STROKE AND
DON'T ANSWER THAT BUT I'M SAYING
WE'LL END IT AND EVERYTHING WILL
BE SOLVED OR NOT.
OKAY.
AND THEY'RE NOT GOING TO FOLLOW
ME HOME.
SECOND, DO WE REALLY WANT PEOPLE
KNOWING OUR INTERNAL VOICE
THOUGH?
I KNOW YOU DON'T WANT TO HEAR MY
INTERNAL VOICE.
NOBODY WANTS IT HEAR THAT.
REGARDING PAIN PATIENTS.
I THINK IT'S BRILLIANT.
I WOULD NEVER DARE TO PROPOSE IT
BUT IS THAT OPEN SEASON NOW?
PEOPLE HAVE 50% COMPLIANCE WITH
PILLS FOR UNCHANGED FOR DECADES.
PEOPLE WITH STROKE ARE 50%
COMPLIANCE WITH PHYSICAL
THERAPY.
ASSIGNED BY CLINICIANS THEY
TRUST AND HOW DO YOU GET PEOPLE
TO DO SOMETHING DIFFERENT?
YOU BRIBE THEM.
IT'S TIMELESS AND RELIABLE.
NEXT, SOMETHING I CAN'T MENTION
AND THEN CANDY AND THEN SO
FORTH.
SO, I THINK THAT'S GREAT.
I HOPE WE SEE MORE OF THAT.
I JUST WANTED TO GIVE A HUGE
THUMB'S UP TO THAT IDEA AND
HOPEFULLY INTERESTED IN HEARING
MORE SUGGESTIONS ALONG THE WAY.
>> I NEVER YOU HEARD YOU SAY
ANYTHING ABOUT FDA BEFORE.
THAT WAS TOTALLY NEW.
I WON'T RESPOND.
I APPRECIATE THE COMMENT.
YEAH, THE ETHICAL ISSUES ARE
REALLY INTERESTING.
THE BRAIN INITIATIVE HAS
NEUROETHICS WORKING GROUP WHERE
THEY HELP PROGRAM AND P.I.s
NOODLE THROUGH AND WHAT
QUESTIONS WE NEED TO ASK.
IT WAS LAST MEETING OR THE
MEETING BEFORE WE TALKED ABOUT
THE TBI/DBS STUDIES AND HOW WE
ADDED AN RO1 TO LOOK AT THOSE
ETHICAL ISSUES BECAUSE NOW WE
WERE RESTORING A LEVEL OF
FUNCTION THAT WAS PREVIOUSLY
UNEXPERIENCED AND WHAT WERE THE
ETHICAL IMPLICATIONS OF THAT.
I DON'T HAVE ANSWERS BUT THESE
ARE RESEARCHABLE QUESTIONS WE
CAN BE DOING RESEARCH ON.
AND THE CARDIAC REHAB PAPER I
JUST POINTED OUT THAT CAME OUT
OF AN RFA THAT NHLBI AND NIA DID
LIKE SEVEN YEARS AGO TO SEE HOW
TO ADVANCE CARDIAC AND PULMONARY
REHAB IN THE COMMUNITY.
>> I ALSO SECOND YOUR ISSUE
ABOUT HOW DO YOU GET THROUGH TO
YOUR PATIENTS, HOW DO YOU BRIBE
THEM?
I THINK ONE THING WE'RE SEEING
IN THE REHAB FIELD IS HOW
IMPORTANT THAT WHOLE PSYCHOLOGY
THAT APPLIED BEHAVIOR, THE
LITTLE TRICKS YOU DO ESPECIALLY
TO REHAB POPULATION.
PEOPLE ARE NOT GREAT ABOUT DOING
HEALTH THE BEHAVIOR.
WITH THE SPECIAL OPPORTUNITY
BECAUSE THEY'RE TRYING TO BE
RESPONSIVE BUT IT'S SUCH A HUMAN
THING TO TRY TO PULL BACK AND
NOT DO WHAT'S IN THEIR OWN BEST
INTEREST.
THAT PSYCHOLOGY IS AN
UNAPPRECIATED THING IN THE
ACADEMIC COMMUNITY.
>> I THINK IT OPENS THE DOOR.
SOME PEOPLE WILL RESPOND TO A
CARTON OF MARLBOROUGHS OR A
FIFTH OF JACK DANIELS AND THIS
IS WHAT MOTIVATES PEOPLE AND I'M
WONDERING HOW MUCH WE'RE OPENING
THE DOOR TO ALLOW US TO BRIBE
PATIENTS IN THEIR VOICE IN THEIR
LANGUAGE TO GET THEM TO DO
WHAT'S GOOD FOR THEM.
>> NOT BRIBES -- THESE WERE
FINANCIAL INCENTIVES.
YEAH, WE HAVE MORE WORK TO DO.
>> THIS IS FERANMI SPEAKING
AGAIN AND TALKING ABOUT THE
DIFFERENT CONFERENCES YOU'VE
BEEN ABLE TO GO TO.
ONE SUGGESTION -- I'M NOT SURE
IF YOU'VE DONE THIS IN THE PAST,
REHABILITATION ENGINEERING
SOCIETY OF AMERICA AND ANOTHER
WHICH YOU PROBABLY HAVEN'T BUT
HAVE YOU HEARD OF THE ABILITY
EX-POS?
IT'S NOT A TRADITIONAL ACADEMIC
SETTING BUT IF THERE WAS A
PRESENTATION AT A DISABILITIES
EXPO YOU COULD INTERACT WITH THE
COMMUNITY.
THEY'RE NOT THE RIGOROUS
ACADEMIC EVENTS BUT I THINK IT
MAY BE A REASONABLE SPACE TO AT
LEAST GET MORE OF THE VOICE OF
THE COMMUNITY BY MAYBE PICKING
AN ABILITIES EXPO.
>> WE HAVE A HUGE ONE IN
HOUSTON.
>> THANK YOU FOR YOUR REPORT AND
THE COLLABORATION WITH THE NIBIB
ON THE GRADUATE CAP STONE
PROJECTS AND THE PRIZES ARE
GREAT BUT TENDS TO FAVOR WHERE
IT'S SET UP TO DO THAT.
HOW ABOUT PROVIDING MODEST
FUNDING TO TEAMS TO WORK TOWARDS
THAT.
THIS IS OFFERED.
I THINK THEY OFFERED 4500 TO
TEAMS TO DEVELOP CAP STONE
PROJECTS FOR GUIDELINES.
THAT WOULD OPEN IT TOE
UNIVERSITIES.
>> THERE'S -- TO UNIVERSITIES.
>> THERE'S DEFINITELY FREQUENT
FLYER UNIVERSITIES THAT ARE WELL
OIL MACHINES BUT I'LL BRING IT
BACK TO NABIB.
>> KATHLEEN.
>> I WANTED TO TALK ABOUT THE
MOTIVATION TO DO REHAB IS A BIG
PROBLEM.
IN TERMS OF PREVENTION WE NEED
TO GET PEOPLE DOING BEHAVIORS
EARLIER AND BEHAVIOR CHANGES AND
WORKING WITH CHILDREN SO IF THEY
START DOING IT YOUNG IT BECOMES
EASIER AS YOU PAGE.
I DON'T HAVE A SOLUTION BUT I
THINK ABOUT THIS MOTIVATION IN
TERMS OF PREVENTION TOO.
>> THAT'S ONE OF THE REASONS I'M
GLAD WE HAVE FRIENDS AT OBSSR.
I DON'T HAVE THAT EXPERTISE BUT
I KNOW WHAT WE DON'T KNOW AND
HAVE THE COLLABORATIONS AND
RESOURCES.
AT THE COUNCIL OF OBSSR AND I
MET WITH HER AND FASCINATED BY
HAVING A PILL THAT COULD SAVE
YOUR LIFE AND CAN'T GET THEM TO
TAKE IT.
AND WE'RE NOT ALONE.
>> AND AS YOU GET TO THE
ENVIRONMENTAL FACTORS THEY CAN
BE SUPPORTS OR BARRIERS AND ALSO
IT'S AN OPPORTUNITY FOR WHAT
TIFFANY WAS SAYING TO THINK
ABOUT THE CULTURAL, RACIAL
ETHNIC ISSUES AND HOW WHAT IS
THE DISABILITY AND IT'S AN UNDER
APPRECIATED AREA AND COME UP
AGAINST THE HEALTH CARE
CONSTRAINTS BECAUSE IT'S NOT
REIMBURSABLE.
IT'S A PART OF OUR DISCUSSION
HERE.
>> THERE'S ANOTHER CONFERENCE AT
THE AMERICAN SOCIETY FOR NEURAL
REHABILITATION.
I LIKE THAT TOO.
>> FIRST, A THUMBS UP TO THE
ABLISM RFA AND THE BIOETHICS
ASSOCIATED WITH SHARING OUTCOMES
WITH PARTICIPANTS IN RESEARCH
STUDIES.
THE QUESTION AROUND THE DECISION
MAKING WITH BRINGING BACK SOME
OF THOSE FUNDING OPPORTUNITIES
BECAUSE I FEEL LIKE I'VE MISSED
OUT AND WOULD LOVE TO BE A PART.
SO THAT'S A QUESTION AND MAYBE A
COMMENT REFLECTING BACK PART OF
WHAT TIFFANY AND JEREMY BROUGHT
UP AND YOU MENTIONED THIS VIA
THE IMPROVING DIGITAL
ACCESSIBILITY AND TECHNICAL
PUBLICATIONS IS HOW WE CAN
BETTER INCLUDE RESEARCH
PARTICI
PARTICIPANTS PUBLISHING PROCESS
AND INDIVIDUALS WITH DISABILITY
AND WHAT WE'RE TRYING TO DO WITH
THE JOURNAL ISN'T JUST LOOKING
AT HOW APPROACHES AND STRATEGIES
TO HUMANITY WILL ENHANCE HOW WE
LOOK AT THE WORK IN
REHABILITATION BUT ALSO TRYING
TO BE AN INCLUSIVE PUBLICATION
OF CO-CREATING CONTENT WITH
PARTICIPANTS WITH THE DISABILITY
COMMUNITY AND TRYING TO ACTIVELY
SEEK FUNDING TO SUPPORT
EDITORIAL STAFF FROM THE
DISABILITY COMMUNITY TO SHAPE
THE VISION OF THE JOURNAL.
I THINK IT CREATES A SPACE WHERE
THE LIVED EXPERIENCE IS BROUGHT
AS WITH THE SAME RESPECT AND
RIGOR OF THE SCIENTIFIC OUTCOME
OF WHAT WE MIGHT DO IN OUR
JOURNALS.
THEY'RE A NARRATIVE REFLECTION
MAY BE LOOKED AT IN THE SAME WAY
AROUND WHAT THEIR LIVED
EXPERIENCE HAS BEEN ON A
PARTICULAR CLINICAL TRIAL OR HOW
THAT MIGHT SHAPE WHAT WE THINK
ABOUT COMMUNITY ENGAGEMENT AND
INCLUSION.
>> I WANT TO CALL OUT SARAH HAS
TAKEN ON THE LEADERSHIP AND THE
HUMANITIES AND REHABILITATION.
THAT'S SOMETHING SHE'S BECOME A
CHAMPION ON.
>> THANK YOU.
>> SO WE DON'T HAVE ANY PLANS TO
REISSUE THE ABLISM RFA RIGHT
NOW.
SO WE JUST STARTED A COUPLE
MONTHS AGO WITH THE FIRST 10.
WE'LL SEE HOW THAT GOES.
THAT SAID, MOST OF WHAT WE FUND
COMES THROUGH PARENT
ANNOUNCEMENTS AND WE'LL ALWAYS
TAKE APPLICATIONS ADDRESSING THE
HEALTH NEEDS OF PEOPLE WITH
DISABILITIES.
SO JUST BECAUSE YOU DON'T SEE A
SPECIFIC FUNDING OPPORTUNITY
THAT CALLS OUT YOUR THING,
PLEASE KNOW THAT YOU CAN ALWAYS
TALK TO US AND WE CAN HELP YOU
FIND A PARENT ANNOUNCEMENT THAT
WOULD COVER THAT.
I DO THINK THERE'S A CALL IN
RESEARCH REPORTING RESULT S AND
YOUR QUESTION ABOUT CO-CREATION
A
AND LOOK AT ASSETS AND FORGET
THE ASSETS THE COMMUNITY IS
BRINGING SO I APPRECIATE THE
CO-CREATING ASPECT.
>> ANGEL.
>> THANK YOU.
JUST RESPONDING TO WHAT YOU WERE
SAYING ABOUT HOW TO CHANGE
BEHAVIOR AND REACH MORE PEOPLE.
IT GOES TO EXPANDING CONFERENCES
AND GETTING TO WHERE THE PEOPLE
ARE COULD DEFINITELY HELP
ENCOURAGE THAT AND HAVE A
QUESTION ON THE DISABILITY
CHALLENGE AND DID YOU SAY WHEN
IT WOULD BE ANNOUNCED.
DO YOU THIS BEING ANNIAN -- AN
ONGOING THING.
>> IT WILL BE ANNOUNCED MID
JANUARY ASSUMING IT'S ON
SCHEDULE.
>> THERE'S TIMES WHEN YOUR
CHALLENGE IS A GOOD WAY TO
ENGAGE WITH THE FIELD TO MOVE
SCIENCE FORWARD IN A DIFFERENT
WAY AND A DIFFERENT TIME SCALE
AND HAS ITS PLACE.
THIS IS THE FIRST TIME WE RAN A
CHALLENGE OURSELVES AND HAVE
LEARNED A LOT.
I'M ENCOURAGED WHEN THERE'S A
NEED THAT ISN'T GOING TO BE
ADDRESSED BY THE TYPICAL NIH
AWARD SYSTEM THIS IS AN
OPPORTUNITY.
WE DON'T HAVE ANYTHING PLANNED
AT THE MOMENT.
WE PLANNED THIS AS A TWO-YEAR
PROJECT.
WE WANT TO GET TO KNOW THE
TEAMS.
THIS IS A TWO-WAY STREET.
YES, THEY WON A PRIZE BUT WANT
TO KNOW WHAT THEY'RE DOING AND
WHAT THEIR COMMUNITIES ARE
TELLING THEM.
WE'RE HOPING TO LEARN FROM THEM
AS WELL.
SO IT'S NOTHING PLANNED RIGHT
NOW BUT DEFINITELY ANOTHER TOOL
IN OUR TOOL KIT.
>> WE HAVE TO THINK OF BEHAVIOR
CHANGE AND TWO WAYS IN WHICH
PEOPLE WANT TO CHANGE AND
EXTERNAL THINGS THAT MAKE PEOPLE
CHANGE LUKE INCENTIVES.
NOT TO LOSE THAT PIECE ABOUT
LOOKING AT IT FROM THE
INDIVIDUAL FROM WHAT IS IT THAT
HELPS THEM TO INTERNALLY
MOTIVATE.
>> IN THAT CASE WE'LL TURN IT
OVER TO STAFF.
>> OKAY, THANK YOU FOR THE
COMMENTS ON THE DIRECTOR'S
REPORTS FROM NICHD LEVEL AND NIH
LEVEL AND THERESA'S INSIGHTS IT
NCMRR.
AND NOW TO PEPE ADVISES TO THE
LARGER COUNCIL AND HAS TO SIT
THROUGH THREE OTHER MEETINGS PER
YEAR WE WANTED TO GET AN UPDATE
IN TERMS OF REPRESENTING A BOARD
AND WANTED TO GIVE HIM A FORMAL
INTRODUCTION AND
DR. CONTRERAS-VIDAL IS THE
DISTINGUISHED PROFESSOR IN THE
DEPARTMENT OF ENGINEERING AT THE
UNIVERSITY OF HOUSTON DIRECTING
THE NSF FUNDED BRAIN CENTER AND
A FELLOW OF THE IEE E AND SERVES
AT THE BOARD'S LIAISON TO THE
NICHD COUNCIL.
WE ALSO HAVE ANOTHER RESEARCH OR
TWO REPRESENTING US ON THE NICHD
LEVEL COUNCIL.
HE'LL REPORT OUT HIS EXPERIENCES
ON SERVING ON THE COUNCIL AND
THANK HIM FOR THE EXTRA WORK
HE'S DOING.
>> THANK YOU FOR GIVING ME THE
OPPORTUNITY TO REPRESENT THE
BOARD AT COUNCIL.
IT'S BEEN A PHENOMENAL
EXPERIENCE.
I'VE BEEN SPEAKING TO THE VOICE
OF THE PARTICIPANT TOO BUT
TRUTHFULLY I THINK IT'S A HIDDEN
SECRET.
WE HAVE ONE DAY THAT'S PUBLIC
AND ONE DAY WHERE IT'S BEHIND
CLOSED DOORS BUT WE HAVE
DIFFERENT DIRECTORS FROM
DIFFERENT INSTITUTES REPORTING
ON WHAT THEY'RE DOING.
AND LOOKING AT WHAT THEY CAN DO
TOGETHER.
THE CONCEPT REVIEW AND CLEARANCE
FOR REQUEST FOR APPLICATION WAS
INTERESTING TO ME.
I THINK ONE OF THE MOST TO ME
INFLUENTIAL PARTS IS THE VOICE
OF THE PARTICIPANT.
I HAVE INCLUDED THAT IN MY OWN
RESEARCH AND MENTORING.
WE ASSESSED THE CLINICAL TRIAL
FOR INTERFACES AND IT WAS CLEAR
WE NEEDED SOMEBODY WITH
EXPERIENCE TO BE PART OF THE
TEAM AND A COLLEAGUE INVITED TO
BE A CO-AUTHOR AND OFFER HIS
PERSPECTIVE AND KNEW MANY PEOPLE
AND INCLUDED THAT EARLY ON AND
THROUGH THE PROCESS.
AND TREAT THEM AS A FULL MEMBER
INCLUDING REIMBURSEMENT AND
PAYMENT FOR THEIR WORK.
SO THAT WAS REALLY THAT CAME
FROM THAT TO BE INCLUSIVE AND
HAVE THEIR PERSPECTIVE.
IN MY MENTORING SO WHENEVER I
CAN I TRY TO BRING THE VOICE OF
THE PARTICIPANT OR GO TO THEM.
I BRING MANY STUDENTS FOR
EXAMPLE TO THE MUSE -- MUSEUM
AND WE TALK TO THE PARENTS AND
CONDUCT RESEARCH AT THE SAME
TIME AS TRAINING STUDENTS AND
DOING OUTREACH.
IT'S A GREAT WAY TO INTEGRATE
ALL THESE THINGS TOGETHER.
AND I THINK IT'S VERY SUCCESSFUL
BECAUSE IT'S REALLY IMPORTANT TO
BE ABLE TO SUSTAIN THESE
EFFORTS.
IT HAS ALSO HAD AN INFLUENCE ON
THE WORKFORCE PROGRAM AT THE
BRAIN CENTER WE HAVE FROM HIGH
SCHOOL TO POSTDOC FELLOWS AND
WE'RE THANKFUL FOR AN R25 WE
HAVE THE INSTITUTE AND THIS IS
SOMETHING WE'RE STARTING A NEW
TRAINING GRANT WITH THE FDA
BECAUSE THERE'S A LACK OF
EXPERTISE IN DEVELOPING
REGULATORY TOOLS TO REVIEW THESE
MEDICAL ADVISORS.
WE WANT TO START WITH THEM IN
HOUSTON AND GO TO MARYLAND TO
SPENT TIME WITH THE FDA AND THAT
WILL STRENGTHEN EVERYBODY AND
ADDRESS ISSUES WE MENTIONED
BEFORE.
IN TERMS OF MY MENTORING YOUR
CAREERS ARE NON-LINEAR.
I HAD AN OPPORTUNITY IN MY
SENIOR YEAR IN MEXICO TO SPEND A
YEAR DOING RESEARCH.
I THINK THAT WAS ANOTHER ONE.
I CAN STILL REMEMBER I WAS
WORKING ON A PROJECT ASSIGNING
MANY HOURS THERE WORKING ONE MY
TEAMS AND MY FIRST TIME WORKING
ON A TEAM IN A REAL WORLD
PROJECT.
AND SO I HOPE WE CAN CONTINUE
PROVIDING THE OPPORTUNITIES TO
OUR STUDENTS.
IT'S NEVER TOO EARLY.
IF YOU GO BACK TO HIGH SCHOOL
BECAUSE THAT'S A REALLY
IMPORTANT TIME FOR THEM TO
ESTABLISH WHERE TO GO AND
INCREASE THE REVIEW OF THE
IMPACT ON WHAT THEY'RE DOING IN
SOCIETY.
AND WE HAVE TO SPENT MORE TIME
AND THE WAY I LIKE TO DO IT IS
LOOK AT THE UNITED NATIONS
ISSUES.
THERE'S MANY WAYS TO OPEN
HORIZONS AND TALK ABOUT THAT.
THIS IS HOW YOU SEE MY MISSION
AND TO CONCLUDE WITH TEAM
SCIENCE WE COME FROM DIFFERENT
BACKGROUNDS HERE AN FACILITATE
CROSS TALK.
I'M PART OF TWO NETWORKS ONE
FOCUSSED ON MUSIC AND DEMENTIA
AND DELIVERING THE INTERVENTION.
AND WE FOCUSSED ON THAT.
AND NOW I DIDN'T WORK MORE
RECENTLY ON INTERNATIONAL
NETWORKS.
THIS INCLUDES THE EUROPEANS AND
THE OUTCOME OF THE HUMAN BRAIN
PROJECT IN EUROPE AND OUR GOAL
IS TO USE THE INFRASTRUCTURE
AVAILABLE IN OUR CENTERS IN
TERMS OF TECHNOLOGY AND
EXPERTISE AND DATA STRUCTURES
AND PLATFORMS TO BRING MUSIC AND
DANCE AS A WAY TO PROMOTE BRAIN
HEALTH.
THIS IS UNDER STUDIED AND UNDER
FUND
FUNDED AREA AND WHEN YOU ARE
CREATING SOMETHING AND SO WE
NEED TECHNOLOGY THAT PEOPLE WANT
TO USE SO YOU NEED TO PROVIDE
AND EMPOWER THE PARTICIPANTS TO
GET THE DATA THEY WANT WHENEVER
THEY WANT IT AND SO I'M REALLY
HOPEFUL WE CAN DO MORE
COLLABORATION WITH OTHER FEDERAL
AGENCIES AN BRAIN INITIATIVE IS
AN EXAMPLE BUT AN OPPORTUNITY TO
WORK NOT ONLY WITH THE NAD BUT
MSS AND INDUSTRY.
I THINK WE NEED TO DO MORE.
THERE'S A LOT OF INVESTMENT WITH
BRAIN INTERFACES AND ANOTHER
BILLION DOLLAR MARKET.
THERE'S MANY CHALLENGES AND
WE'RE TRYING TO CATCH UP WITH
SOME OF THOSE CHALLENGES.
ANYWAY, I APPRECIATE THE TIME
AND WHOEVER IS GOING TO TAKE MY
PLACE YOU'RE LUCKY.
AGAIN, I THINK SOMETHING I DO IS
I TELL MY COLLEAGUES MAKE SURE
YOU ATTEND ONE OF THESE OPEN
MEETINGS.
THE INSTITUTE HAVE THEM I
BELIEVE AND LEARN ABOUT WHAT THE
PRIORITIES ARE AND THINK ABOUT
THE RESEARCH, THANK YOU.
>> I WANT TO EXTEND FOR THOSE
THAT DON'T KNOW THE NICHD
ADVISORY COUNCIL IS A SECOND
LEVEL REVIEW AND A MIXTURE OF
NECESSARY BUSINESS AND OVERVIEW
OF THE BROADEST OF INSTITUTES
AND PEPE WAS CHOSEN FOR THE ROLE
BECAUSE OF HIS BACKGROUND IN
ENGINEERING AND REHAB AND AS HE
EXPRESSED THE HUMANITY HE BRINGS
TO THE ROLE AS WELL.
HE ALSO MENTIONED THE VOICE OF
THE PARTICIPANT WHICH IS
SOMETHING WE HAVE TO GIVE
DR. BIANCHI CREDIT FOR BECAUSE
THE ADVISORY COUNCIL CAN USUALLY
BE A LITTLE BIT MIND NUMBING.
AND SHE'S ADDED THIS FEATURE OF
HIGHLIGHTS A PARTICULAR AREA OF
RESEARCH NOT ONLY HAVING THE
RESEARCHER THERE BUT ANOTHER, A
FATHER, A FAMILY OF SOMETHING
AFFECTED AND BRINGS HOME TO THE
FACT WHAT WE DO AS RESEARCHERS
HAS CHANGED PEOPLE'S LIVES.
WE HAVE TO GIVE HER CREDIT FOR
THAT TOO.
PART BEING THE ADVISORY COUNCIL
IS IT'S STRESSFUL.
FUNDING IS VERY TIGHT AS YOU
KNOW IT'S A VERY GETTIVE PROCESS
AND THERE ARE COMPETING
INTERESTS AND ALSO SYNERGY.
I LIKE YOU HIGHLIGHTED THE
POTENTIAL SYNERGY AMONG THOSE
TOO.
IF ANYBODY HAS ADDITIONAL
QUESTIONS FOR THE NICHD ADVISORY
COUNCIL EXPERIENCE WHAT PEPE'S
BEEN THROUGH, LET'S OPEN IT UP
FOR THAT.
ANY DISCUSSION.
>> YOU GET TO REVIEW SOME
PROPOSALS AND PROVIDE YOUR INPUT
AND YOU CANNOT VOTE BUT CAN
PARTICIPATE IN THE DISCUSSION SO
THAT'S GOOD.
>> NOW WE'RE COMING TO THE LUNCH
BREAK.
WE'LL BE TAKING A BREAK TO 1:00
P.M. EASTERN STANDARD TIME.
>> OKAY.
I THINK WE'LL GET STARTED WITH
THE AFTERNOON SESSION.
WELCOME BACK, EVERYONE.
WE'LL START WITH PRESENTATIONS
BY DR. MICHEL JOHNSON AN
ASSOCIATE PROFESSOR AT THE
UNIVERSITY OF PENNSYLVANIA
DIRECTING THE REHABILITATION
ROBOTICS LAB.
IT'S ALL YOURS.
>> THANK YOU, VERY MUCH,
BARBARA.
TODAY I WANTED TO PRESENT
AFFORDABLE NEUROREHABILITATION
WITH FUNCTION AFTER TRAUMATIC
BRAIN INJURY.
A FEW HOUSEKEEPING.
SOME FINANCIAL DISCLOSURE SOME
THINGS I'LL REFERENCE IS PATENT
AND HAVE A SPINOFF OUT OF PENN.
FROM A BIG PICTURE WHAT I'M
CALLING IN GENERAL NON-TRAUMATIC
BRAIN INJURY, NON-COMMUNICABLE
DISEASES SUCH AS HEART DISEASE
AND STROKE, ESPECIALLY STROKE
THAT OFTEN RESULT IN BRAIN
INJURY AS A RESULT OF ISCHEMIC
OR HEMORRHAGIC INFARCTS.
SO A HIGH NUMBER OF LOCATED IN
LOW AND MIDDLE INCOME COUNTRIES.
I STRESS THAT BECAUSE A PART OF
MY RESEARCH HAVE BEEN THINKING
ABOUT LOW RESOURCE SETTINGS
WITHIN THE COMMUNITY IN HIGH
INCOME COUNTRIES AND THINKING
ABOUT IT IN A GLOBAL DEVELOPING
SPACE.
ANOTHER GROUP THAT'S OFTEN NOT
THOUGHT ABOUT BUT NON-TRAUMATIC
BRAIN INJURY DOES HAPPEN IN HIV.
THEY CALL IT INE HIV-ASSOCIATED
NEUROLOGICAL DISORDERS.
I'VE BEEN WORKING WITH THAT
GROUP AND CEREBRAL PALSY
CHILDHOOD OR MEDICAL CONDITIONS
THAT END UP RESULTING IN BRAIN
INJURY.
WE INCREASING FACE CHALLENGES TO
TREAT FOR AND RESULTING IN A GAP
IN CARE.
I'M TRAINED AS AN ENGINEER AND
SO MY BIAS IS TECHNOLOGY CAN
HELP BRIDGE THIS GAP.
THE TYPE OF TECHNOLOGY THAT I'LL
BE TALKING ABOUT IS THERAPY AND
ASSISTIVE ROBOTICS AND MEGA
TONIC SYSTEMS.
WHEN I THINK OF THERAPY ROBOTS
I'LL BE REFERRING TO SYSTEMS
THAT ARE FOCUSSED ON HELPING
WITH REMEDIATION BUT HAVE
ASSESSMENT CAPABILITIES FOR
IMPAIRMENT AND DESIGN TO DELIVER
AUTONOMOUS OR SEMI AUTONOMOUS
THERAPY.
AND THOSE I'M TALKING ABOUT ARE
THE ONES I'LL FOCUS ON STROKE,
HIV AND CEREBRAL PALSY.
I'LL MENTION ASSISTIVE ROBOT
SYSTEMS.
WHEN I TALK ABOUT THOSE SYSTEMS
WE'RE TALKING ABOUT SYSTEMS THAT
ARE OFTEN NOT ALWAYS IN DIRECT
CONTACT WITH THE PATIENT.
THESE MIGHT BE MEGA TRONIC
SYSTEMS, SOCIAL ROBOTS IN THE
FORM OF TOYS, ETCETERA.
THESE ARE TWO EXAMPLES HERE THAT
MAY BE OBSERVING, MONITORING,
DEMONSTRATING OR TRYING TO HE
WILL -- ELICIT BEHAVIOR.
PEOPLE SAY ARE YOUR ROBOTS
TRYING TO TAKE MY JOB.
THE ANSWER IS NO.
I'M NOT TRYING TO TAKE YOUR JOB.
MY PHILOSOPHY IS OUR SYSTEMS ARE
MEGA TRONIC AND TECHNOLOGY
SYSTEMS SHOULD COME ALONG SIDE
THE CLINICIAN AND BE A PART OF
THE THERAPEUTIC PROCESS.
AS CLINICIANS MIGHT DEMONSTRATE
FOR A PATIENT TO DO SOMETHING,
MAYBE THE ROBOT IS A
CO-DEMONSTRATOR OR CO-COLLECTOR
OF INFORMATION OR CO-OBSERVER,
CO-HELPER.
THAT I ALWAYS PUT OUT THERE IS
MY DREAM IN ASSISTIVE
TECHNOLOGIES AND THE EXERCISE
ROBOT IS ONE OF THE FIRST
SYSTEMS I PUT TOGETHER TO
SUPPORT UPPER EXTREMITY WITH
STROKE SURVIVORS.
THE ROBOT WAS ATTACHED TO THE
IMPAIRED ARM AND PROGRAMMED IT
TO DO A VARIETY OF MOVEMENTS FOR
DAILY LIVING.
AND THERE'S THE BAXTER A
HUMANOID ROBOT DESIGN TO WORK
CLOSELY WITH PEOPLE.
WE'VE DESIGN GAMES AROUND BA
BAXTER, INTERACTIVE SYSTEMS TO
LOOK AT USING THIS SYSTEM FOR
ELDERLY EXERCISE WITH PEOPLE
WITH AND WITHOUT STROKE.
WE'VE ALSO THOUGHT ABOUT USING
IT TO KIND OF TRANSITION BETWEEN
OBSERVING AND HELPING ROLES.
WE LHAD A PILOT STUDY LOOKING A
MONITORING WEARABLE TECHNOLOGY,
WHAT THE ARM IS DOING AND THEN
DECIDE HOW AND WHEN TO
INTERVENE.
REHABILITATION ROBOTICS HAVE
BEEN AROUND FOR A WHILE.
AS A Ph.D. STUDENT I WENT TO THE
SECOND ICOR CONFERENCE AND THE
SECOND AT THE UNIVERSITY OF
DELAWARE AND THAT WAS -- AT THE
TIME THERE MAY HAVE BEEN ONLY
TWO LABS ACTIVELY WORK ON
REHABILITATION WORKSHOPS.
SINCE THAT TIME THERE'S BEEN
TONS OF REVIEW AND LITERATURE
THAT SHOW AN INCREASED INTEREST
IN THIS AREA AND EVIDENCE THERE
MAY BE UTILITY HERE AND SOME OF
THE PROS HAVE BEEN ESTABLISHED.
IT CAN ENABLE SEMI AUTONOMOUS
TRAINING AND PROVIDES CONSISTENT
REPEATABLE AND INTENSIVE
TRAINING THAT'S A GOOD THING AND
A PLUS IS IT APPLIES OBJECTIVE
MEASURES OF RECOVERY.
THERE'S PROS AND CONS IN TERMS
OF HOW WELL DO WE SEE TRANSFER
TO REACTIVITIES OF DAILY LIVING
AND THOSE ARE SOME ISSUES I'VE
ALSO BEEN WORKING ON.
ONE OF THE THINGS WE WANTED TO
DO AND I'M BIASSED BECAUSE I WAS
BORN IN JAMAICA AND EVERY TIME I
THINK OF BEING IN THE UNITED
STATES AND TAKING ADVANTAGE OF
THE GREAT REHABILITATION
STRUCTURE HERE I ALWAYS THINK
BACK TO MY RELATIVES IN JAMAICA
AND THINK THEY DON'T HAVE ACCESS
AND DRIVES MY INTEREST ABOUT
ROBOTS IN NOT JUST HIGH INCOME
PLACES BUT LOW AND MIDDLE INCOME
AND COMMUNITY AND RURAL SETTINGS
LOW RESOURCE SETTINGS WITHIN THE
HIGH-INCOME COUNTRIES.
MYSELF AND AN OCCUPATIONAL
COLLEGIATE COLUMBIA UNIVERSITY
WE DID A QUICK LOOK AROUND THE
WORLD TRYING TO UNDERSTAND THE
IMPACT OF REHABILITATION
ROBOTICS.
ONE OF THE QUICK THINGS WE DID
WAS LOOK AT COMPANIES THAT HAVE
BEEN SPAWNED OUT OF
UNIVERSITIES, ETCETERA AND WHERE
THAT ACTIVITY WAS OCCURRING
THESE ARE SOME SO IF I'M MISSING
SOME DON'T COME AT ME BUT 23% IN
THE NORTH AMERICA AND 24% IN
ASIA AND 24% IN EUROPE AND 34%
OR 35% IN JAPANESE AND FEW IN
THE AFRICAN AND SOUTH AMERICA
AREA.
SO IE, THE CONCLUSION IS THAT
WHILE THIS REHABILITATION
ROBOTICS AND ASSISTIVE
TECHNOLOGY IS RAPIDLY GROWING
LIKE A BILLION DOLLAR BUSINESS
THE IMPACT AND REACH OF THE
SYSTEMS ARE NOT INTO
LOW-RESOURCE SETTING.
AND WITHIN THE HIGH-INCOME
COUNTRIES YOU RARELY GO TO A
RURAL SPACE AND SEE A
REHABILITATION ROBOT.
YOU DON'T SEE THE PENETRATION WE
WOULD HOPE TO SEE FOR A SYSTEM
THAT THE EVIDENCE IS BUILDING UP
THAT THERE IS SOMETHING GOOD
THERE.
SOME OF THE PROBLEMS WITH THE
CURRENT SYSTEMS IS THEY'RE
MECHANICALLY COMPLEX HUGE SIZES
AND MASSIVE HIGH COST.
THE CHALLENGE IF YOU'RE TRYING
TO IMPACT LOW RESOURCE SETTINGS
IS THEY OFTEN ARE DEALING WITH
LACK OF SPACE, LACK OF
PHYSICIANS AND LACK OF MONEY.
SO THE THINGS THAT BASICALLY
PROHIBIT THE EASE OF USE.
I HAD A COLLEAGUE TO WRITE A
SYSTEMATIC REVIEW AND TALKED
ABOUT RECOGNIZING THE POTENTIAL
UTILITY OF THE ROBOTS AND
REHABILITATION SYSTEMS AND THE
TECHNOLOGY SYSTEMS.
THAT THEY ARE CAN SUPPORT BE THE
MAPPING THAT ALLOW A CLINICIAN
TO REACH MULTIPLE AND MANY
PEOPLE BUT NOT AFFORDABLE FOR
THE SETTINGS HE WAS THINKING
ABOUT WHICH ECHOS WHAT I'VE SEEN
AND WHAT WE'VE STUDIED.
SO THIS CONCEPT OF AFFORDABLE
NEURAL REHABILITATION AND
AFFORDABLE ROBOTICS
REHABILITATION OR TECHNOLOGY IS
VERY TO ME.
THERE'S COLLEAGUES TRYING TO LOW
THE TECHNOLOGIES AND THERAPEUTIC
SYSTEMS GETTING AT THE COST
LEVEL THAT MAKE THEM MORE
PRACTICAL TO REACH HOME AND
COMMUNITY BASED ENVIRONMENTS.
WING OUT THE OF POTENTIAL WAYS
TO GET TO AFFORDABLE TECHNOLOGY
REHAB.
USING LOW-COST UNITS, SIMPLE
ROBOTIC UNITS BUT STRINGING THEM
TOGETHER IN CREATIVE WAYS AND
CIRCUIT TRAINING WAYS AND
RECONFIGUREABLE WAYS USING
CHEAPER MATERIALS, 3-D PRINTING
AND ROBOTS, ETCETERA.
AND USING CHEAPER MATERIALS, TO
DEVELOP A SOCIAL ROBOT AND PUT
IT ON THE WEB AND ALLOW OTHER
UNIVERSITIES TO PICK IT UP AND
DEVELOP A NETWORK OF TRAINING.
I THOUGHT THAT WAS A GOOD IDEA
I'LL TALK THROUGH CASE STUDIES
WE'VE DONE IN OUR LAB I'LL FOCUS
ON WORK WITH STROKE AND HIT HIV
STROKE AND CT.
THERE'S 3,000 STROKES PER YEAR
IN THE U.S. AND MORE WORLDWIDE.
AND 85% ARE NOT INDEPENDENT IN
THEIR HOME ENVIRONMENT AND
THERE'S IMPARENTS THAT PERSIST,
COGNITIVE IMPAIRMENTS, 41% TO
61%.
MOTOR DYSFUNCTION AND
PLASTICITY, PAIN, PSYCHOSOCIAL
ISSUES, PAIN, ETCETERA.
AND ACTIVITIES OF DAILY LIVING.
I WOULD SAY OUR ROBOTS FALL DOWN
THEY FALL DOWN IN TRANSFER OF
ANY GAINS THE ACTIVITIES OF
DAILY LIVING SPACES AND THE
FOLKS WITH COMPLEX SITUATIONS
AND TRY TO LOOK AT THE UTILITY
IN THE MOTOR DYSFUNCTION.
MY ARGUMENT THIS IS POSSIBLY THE
REASON WE'RE NOT SEEING ENOUGH
TRANSFER.
STROKE SURVIVORS ARE IN THE
CLINIC AND JUST FOCUSSED ON
MOTOR YOUR CONTROLLING THE
COGNITIVE ENVIRONMENT.
WHEN YOU TAKE THEM HOME THEY NOW
HAVE TO DO THIS WHILE THEIR
LOVED ONE'S TALKING TO THEM.
HAVE YOU TRIED EATING WHILE
TALKING OR DRIVING WHILE TALKING
I HAVE DIFFICULTY.
THE INCREASED DEMAND AND
STARTING TO CONSIDER MOTOR AND
COGNITIVE ISSUES TOGETHER.
WHEN I FIRST STARTED I'LL START
WITH THE IDEA OF AFFORDABILITY.
I STARTED WORKING WITH
COLLEAGUES IN MEXICO IN
CHIHUAHUA AND ITESM.
THERE WAS A CAMPUS THERE AND MY
COLLEAGUE LAD CONTACTS ESSENTIAL
FOR REHABILITATION THERE IN
CHIHUAHUA.
AND THIS LAND IN THE 2015, 2016
TIME LINE.
WE STARTED LET'S GOING CHEAP AND
SAID OKAY, FORCE FEED THE WHEELS
COMING OUT AND LOTS OF GAMING.
I AT MY LAB IB MRARQUETTE LOOKE
AT THE LOW COST SYSTEMS AND
WHETHER THEY ARE HAD UTILITY.
WE PUT TOGETHER THE FIRST DRIVE
OF THE DRIVE SYSTEM ALONG WITH A
GRANT FROM MEXICO AND IT WAS A
$30,000 GRANT WHICH DOESN'T SEEM
LIKE A LOT BUT WAS A LOT FOR
MEXICO AND SAID CAN WE PUT IN A
SUITE OF ROBOTIC GYM THAT DOES
CIRCUIT TRAINING THAT WOULD
ALLOW STROKE SURVIVORS TO GO
FROM PLACE TO PLACE TO PLACE AND
IT WOULD TREAT THEIR ENTIRE
WHOLE BODY.
SO WE RAN AND PUBLISHED A STUDY
LOOKING AT 20 STROKE SURVIVORS
RANDOMIZED TO CONTROL GROUP WAS
THEM ONE-ON-ONE IN THE STANDARD
OF CARE THAT WAS IN MEXICO AND
THEN THOSE THAT WENT TO THE
ROBOTIC GROUP.
WE DIDN'T LOOK AT COGNITIVE
IMPAIRMENT JUST LOOKED AT MOTOR
AS STANDARD OF WHAT EVERYONE
ELSE WAS DOING.
WE HAD GOOD OUTCOMES.
THE ROBOTIC GROUP WAS ABLE TO
RESULT IN FUNCTIONAL IMPROV
IMPROVEMIMPROVE
IMPROVEMENTS JUST AS THE CONTROL
GROUP AND THE STROKE SURVIVORS
DID NOT FEEL LIKE THEY WERE
MISSING OUT ON HUMAN INTERACTION
BECAUSE IN THE ROBOTIC GROUP WE
HAD ONE THERAPIST OVERSEEING SIX
STATIONS WITH A TECHNOLOGIST
IT'S NOT THEY WEREN'T GETTING
HUMAN SUPPORT.
WE DID A COST MINIMIZATION
ANALYSIS.
THIS REVIEW WAS DONE BY A
COLLEAGUE AND INCLUDED OUR STUDY
AND IN THE CONTROL GROUP THE
COST PER PATIENT WAS ABOUT
$20,000 TO TREAT THE PERSON
BECAUSE OF THE ROBOTIC GROUP AND
THE FACT ONE THERAPIST WAS
OVERSEEING SIX PATIENTS WE WERE
ABLE TO GET THE COST TO $7.
THE SUGGESTION IS IT COULD BE A
COST EFFECTIVE WAY OF BEING ABLE
TO THEN THE ONE THERAPIST MEET
THE THERAPIST AND THE DEMAND IN
THE ENVIRONMENT.
ONE OF THE THINGS WE LEARNED IS
HAPTIC WHEELS WERE NICE BUT NOT
REALLY EFFECTIVE FOR STROKE
SURVIVORS.
WE THOUGHT HOW TO DEVELOP A
SIMPLER ROBOTIC SYSTEM, ONE
DEGREE OF FREEDOM BECAUSE THE
COST INCREASES WITH ACTUATOR IN
THE MOTOR AND WANTED TO SIMPLIFY
ONE ACTUATOR AND CREATE A SAFE
SYSTEM.
WE CREATED THIS HAPTIC THERA
DRIVE THAT IF SOMEONE WITH
SEVERE IMPAIRMENT RELAXED AND
DIDN'T MOVE WITH HELP THE SYSTEM
COULD ROTATOR SUPPORT THE
MOVEMENT OF THEIR RARM
DETERMINE WITH ASSISTIVE
FEEDBACK SIMILAR TO MORE COMPLEX
SYSTEMS.
WE WANTED THAT CONFIGURABILITY
IDEA SO IT COULD NOT JUST BE
FOCUSSED ON MOVING THE UPPER
SHOULDER OR THE ELBOW BUT THAT
YOU COULD ALSO LOOK AT IN THE
PLAIN TYPE MOVEMENT AND WORKED
ON CONNECTING IT BACK TO THE
GAME.
WE THOUGHT ABOUT JUST LIKE THE
CIRCUIT TRAINING IDEA COULD WE
MAKE A SYSTEM THAT WAS
AFFORDABLE THAT WOULD LEVERAGE
OF THESE TYPES AND TARGET THE
PATENT ABOUT HOW CAN WE
INTERCONNECT THE SYSTEMS AND
CREATE A STRUCTURE SIMILAR TO
WHAT WE DID IN MEXICO.
AND THAT KIND OF WAS THE BIRTH
OF THE REHAB CURES GYM.
I MADE THE POINT THAT WE STARTED
OUT WHERE EVERYONE ELSE WITH
LOOKING AT MOTOR FUNCTION IGNORE
COGNITIVE IMPAIRMENT AND WHEN WE
MADE THE HAPTIC THERADRIVE AND
SAID NOW LET'S FOCUS ON
COGNITIVE IMPAIRMENT AS WELL.
AND THIS LED TO A PUBLICATION
WHERE WE REPORTED ON HOW WHEN
YOU THINK ABOUT COGNITIVE
IMPAIRMENT IT DID IMPACT WHAT
PEOPLE WERE ABLE TO DO IN TERMS
OF METER ASSESSMENT AND EVEN
THEIR PERFORMANCE.
WE DID THE CLINICAL ASSESSMENTS
THAT WE DID.
WE HAD TRAINED THERAPIST DO
BASICALLY A MOTOR CONTROL
ASSESSMENT.
WE DID THE BOX AND BLOCK GROSS
ACTIVITY AND GRIP STRENGTH AND
THE MONTREAL COGNITIVE
ASSESSMENT FOR DETECTING MILD
IMPAIRMENT AND DETECT MODERATE
AND SEVERE.
WE ALSO DESIGN IN A SIMPLE TASK
THAT WAS PRIMARILY A MOTOR TASK.
WE TAUGHT THE PERSON HOW TO DO
THIS TRACKING TASK.
IT WAS ESSENTIALLY MOSTLY MOVING
OF THE LIMB AND WE WEREN'T
REALLY TAXING THEM COGNITIVIVELY
AND WE WERE TAXING THEM
COGNITIVELY BUT NOTE GREATLY AND
THEN PLAYED AROUND LOOKING AT
GROUPS THAT HAD DIFFERENT
RELATIONSHIPS TO MOTOR AND COG
IN OUR EFFORTS.
WE LOOKED AT HIGH MORTAR --
MOTOR FUNCTION AND THE PEOPLE WE
TRAIN WHERE THEY HAVE LOW MOTOR
IMPAIRMENT OR NO MOTOR
IMPAIRMENT AND MODERATE TO
SEVERE MOTOR FUNCTION.
THEN WE NEVER REALLY LOOKED AT
THIS GROUP THAT HAD BOTH VERY
MODERATE MOTOR IMPROVEMENT AND
MODERATE COGNITIVE IMPAIRMENT OR
THIS GROUP THAT HAD MILD MOTOR
IMPAIRMENT.
THIS GROUP USUALLY GETS FUNNELED
INTO COGNITIVE REHAB AND THIS
GROUP ENDS UP IN NURSING HOME
BECAUSE THEY'RE A CHALLENGING
GROUP TO PAY ATTENTION TO.
WE STRATIFIED THE GROUP THEN WE
HAD THEM DO THE TRACKING TASK.
IF YOU'RE TRACKING WHAT WE'RE
LOOKING FOR IS PERFORMANCE ERROR
AND LOOKING AT YOUR ABILITY TO
ADEQUATELY TRACK THE LINE, TO
MAINTAIN MAXIMUM RANGE OF MOTION
AT A REASONABLE SPEED.
THE FOLKS WITH LOW MOTOR IN THE
GREEN QUADRANT, LOW COG WERE
MINIMAL PERFORMANCE WERE ABLE TO
HAVE HIGHER SPEEDS AND WERE ABLE
TO MAINTAIN LARGE RANGE OF
MOTION.
THEN YOU START AND ON THE
OPPOSITE HAND THE PEOPLE WITH
MODERATE IMPAIRMENT WERE A
LITTLE ALL OVER THE PLACE AND
LOWER RANGE OF MOTION AND HIGHER
ERRORS.
IN BETWEEN THE GROUP WE NORMALLY
DON'T PAY ATTENTION, THIS IS WHY
THEY'RE TOUGH TO GET A HANDLE ON
THEY'RE ALL OVER THE PLACE.
AND MODERATE IMPAIRMENT AND LOW
COG.
AND LOOKED AT THE GROUP IN THE
MIDDLE.
I APOLOGIZE I DIDN'T REALIZE HOW
LARD THIS WAS TO READ EVEN WHEN
I BLEW IT UP.
IT'S EASY BECAUSE WE'RE USUALLY
LOOKING AT THIS GROUP OVER HERE
AND THE GROUP THAT HAD THIS LOW
MOTOR FUNCTION, MODERATE MOTOR
FUNCTION, LOW MOTOR LOW COG AND
THE TWO GROUP WE'RE WORKING WITH
IN THE REALM OF ROBOTIC THERAPY
BUT WE'RE USUALLY NOT ABLE TO
DISTINGUISH THESE TWO GROUPS
OVER HERE.
THIS WAS OUR FIRST EFFORT TO SAY
COGNITIVE IMPAIRMENT CAUSE
AFFECTS AND CAN WE UNDERSTAND A
LITTLE BIT OF THIS INTERPLAY.
WE ALSO REMEMBERED THE CIRCUIT
TRAINING, GROUP TRAINING IN THE
CONCEPT OF I HAVE A Ph.D.
STUDENT THINKING ABOUT THIS IDEA
OF 34E8DING THE -- MELDING THE
NEAT FOR MOTOR AND COGNITIVE
IMPAIRMENT FOR MULTIPLAYER
GAMING AND THE USE OF HAPTIC
CONNECTIONS AS WAYS OF DEFINING
IMPLICIT COMMUNICATION BETWEEN
TWO PATIENTS BECAUSE WHAT WE
ARGUED IS IF YOU HAD HIGHER
COGNITIVE IMPAIRMENT, MAYBE
GIVING INFORMATION THROUGH YOUR
HAPTIC CHANNELS, SENSORIMOTOR
CONNECTIONS MAY BE MORE
EFFECTIVE.
I HAVE A STUDENT LOOKING AT THE
EFFECTIVENESS OF HAPTIC
TRAINING, COMMUNITY ENGAGEMENT
COMBINED WITH OUR AFFORDABLE AND
ACCESSIBLE THERADRIVE SYSTEMS.
THIS IS THE SET UP OF WHAT IS
TWO REVISED ROBOTS AND MUCH
SMALLER.
ONE CONDITION CONTROLLER, TWO
MONITORS AND THERE'S A
SEPARATION SCREEN IN A COUPLE
STUDY SHE'S DOING.
YOU MAY NOT BE AWARE THE OTHER
PERSON IS THERE.
YOU CAN'T LOOK AT THEM AND SEE
WHAT THEY'RE DOING.
THEY'RE USING LOOKING AT ONE
TASK THE INFORMATION THEY'RE
FORCES FROM ONE PERSON
INTERFERES WITH ANOTHER OR VICE
VERSA.
THEY'RE NOW KIND OF LIKE TRYING
TO BE SUCCESSFUL EACH AT THE
TASK AND BEING IMPACTED BY THE
OTHER PERSON.
IS THE HAPTIC CONNECTION GOING
TO HELP YOU ONE, MOTOR LEARN AND
WHAT IT'S EFFECT ON THE
INTERSECTION OF MOTOR AND
COGNITIVE IMPAIRMENT.
PARTICIPANTS LEARNED TO PLAY THE
PURSUIT GAME AND THERE WAS A
HAPTIC CONNECTION THAT LOOKED
LIKE RAY VIRTUAL AND ADAPTIVE
SPRING AND ASSESSED THEIR
PERFORMS OF PERFORMANCE WITH A
TRACKING TASK AND LOOKING ARE
THEY ABLE TO MAINTAIN ACCURACY.
WE HAD PEOPLE STRATIFIED IN THE
QUADRANT.
THIS TIME WE DIDN'T HAVE ANYONE
IN THE YUM PARMENT GROUM AND HAD
AN OLDER ADULT AND -- IMPAIRMENT
GROUP AND WANTED TO SEE IF YOU
WERE MATCHED WITH SOMEONE WITH
THE SAME TASK AND ABILITY WILL
YOU DO WELL OR WORSE OR IF
YOU'RE MATCHED WITH SOMEONE
WORSE WILL IT AFFECT YOUR
ABILITY TO LEARN, ETCETERA.
>> SO THE CURSER OR WHATEVER IS
THE MOVEMENT OF POSSESSION ARE
DETERMINED BY BOTH PEOPLE?
>> YES.
>> THANK YOU.
SORRY.
>> WE HAD PEOPLE FIRST DO THE
TRIAL.
IN THIS PARTICULAR SCENARIO THEY
ARE DID THE ACTIVE SOLO AND
TRAINED IN THE DIAD AND ASSESS
THEM AND TRY TO UNDERSTAND WHAT
WAS HAPPENING.
WE LOOKED AT WHETHER THEY ARE
WERE ABLE TO LEARN BY HOW THEIR
ERROR CHANGED.
WE COLLECTED THE BASELINE AND
SAW THAT SOMEONE WITH STROKE
WHICH WE FIGURED WOULD HAVE MORE
ERRORS THAN SOMEONE OR ADULT
WITHOUT STROKE.
AND THERE WERE NO CHANGES AFTER
THEY ARE TRAINED TOGETHER.
WE DID NOT SEE -- WE DIDN'T SEE
A MASSIVE ERROR DIFFERENCE FROM
THE STROKE SURVIVOR AND OA AFTER
THE HAPTIC TRAINING IN THAT
SENSE BUT WHAT WE WERE ABLE TO
SEE THOUGH IS THAT ALL
PARTICIPANTS WERE ABLE TO LEARN
EXCEPT THE OA, THE PERSON THE
OLDER ADULT PAIRED WITH THE
STROKE SURVIVOR DID NOT LEARN
VERY WELL.
HAD A HARD TIME LEARNING AND BUT
THE STROKE SURVIVOR DID WELL
WHEN THEY WERE PAIRED WITH THEO
A AND WERE ABLE TO LEARN FROM
THE MORE ADVANCED PARTNER BUT
THE ADVANCED PARTNER HAD A HARD
TIME PROCESSING.
A BETTER PARTNER AND WORSE
PARTNER AFFECTS AND WE PUBLISHED
A SYSTEMATIC REVIEW AROUND THE
USE OF THE HAPTIC DIADS AND
EXPLORING THEIR USE IN THE
COMPLEX POPULATION WHERE PEOPLE
STRUGGLE WITH BOTH MOTOR AND
COGNITIVE ISSUES.
OUR WORK IS UNIQUE IN THAT MOST
PEOPLE WHO DO THE HAPTIC DIADS
DO IT WITH HEALTHY YOUNG PEOPLE
AND NICHD JUST FUNDED BY STUDENT
WITH THE F31, THANK YOU, TO
CONTINUE TO DO THE WORK AND
CONTINUED THE F31 TO CONTINUE
THE WORK.
>> DID YOU LOOK AT THE DATA AT
ALL FOR WHETHER THE PERSON THAT
WAS WORSE ROSE UP TO THE LEVEL
OF THE PERSON THAT WAS BETTER
BUT THAT PERSON THE PARTNER THAT
WAS BETTER DIDN'T REALLY GAIN
BENEFIT.
DO YOU UNDERSTAND WHAT I'M
ASKING?
>> THE PARTNER THAT WAS BETTER
DID NOT GAIN BENEFIT AND THE
PERSON THAT WAS WORSE DID
>> THAT'S WHAT WE FOUND TOO.
IT'S NOT REALLY MOTIVATING FOR
THE PERSON THAT'S BETTER BUT I
DON'T KNOW HOW TO ADDRESS IT.
>> ONE OF THE THINGS WE'RE DOING
IN THIS STUDY IS THE F31 IS AND
I DIDN'T PRESENT IT HERE IS
GOING TO LOOK AT ONE YOU, TRYING
TO HAVE A LARGER POPULATION AND
LOOK AT THE OLDER, OLDER ADULTS
SO WE CAN HAVE SOME INFORMATION
ABOUT OLDER PEOPLE DOING THESE
TYPES OF TASKS AND THEN THE
OLDER ADULTS WITH STROKE
SURVIVORS.
THEN WE'RE GOING TO PLAY AROUND
AND MAKING ONE ACTIVITY STIFFER
AND TRYING TO PLAY WITH WAYS WE
CAN UNE TUNE THE RELATIONSHIP.
IT'S A QUESTION.
DON'T KNOW THE ANSWER YET BUT
WE'RE WORKING ON THAT PART OF
THE F31.
>> SO THESE PEOPLE ARE WORKING
AGAINST EACH OTHER.
WHY COULDN'T YOU SET IT UP TO
WORK COOPERATIVELY?
>> YOU CAN DO BOTH.
PEOPLE IN MANY OF THESE STUDIES
HAVE AND SOME STUDY HAVE LOOKED
AT COLLABORATIVE TYPE WORK.
ONE OF THE THINGS WE WERE TRYING
AND THE INTERESTING THING ABOUT
MOTOR LEAKER AND WHETHER THE
PARTNERS IN A COMPETITIVE WAY
WITH COLLABORATION ARE GOOD
QUESTIONS AND PEOPLE HAVE LOOKED
AT THE HAPTIC DIAD BUT THE
COMPETITION IS SOMETHING WHERE
SOME PEOPLE GO OH, THAT'S COOL
OR HAS ITS BENEFIT.
WE CAN DO BOTH.
THIS IS THE MAJORITY OF THE
LITERATURE DOES IT THIS WAY.
BUT THERE IS SOME LITERATURE
THAT SUGGESTS A COLLABORATIVE
METHODOLOGY AND SOME WILL BE
EXPLORED IN THE F31.
SO ONE OF THE THINGS WE'VE DONE
IS WE GOT AN STTR GRANT TO TAKE
WHAT WE HAVE BEEN DOING WITH
HAPTIC DRIVE INTO THE COMMUNITY
AND DEVELOP A SYSTEM THAT COULD
BE USED IN A LOW-RESOURCE
SETTING.
THIS WAS THE VERSION OF THE
ROBOT.
IT'S IN THE LOW RESOURCE
SETTING.
WE ARE COLLECTING DATA RIGHT
NOW.
WE'RE IN A COMMUNITY-BASED
REHABILITATION CENTER.
THE ROBOT IS THERE AND SET UP A
SCENARIO SIMILAR TO MEXICO WHERE
WE HAVE A GROUP MAPPED INTO THE
CONTROL OKAY OPERACCUPATIONAL T.
THIS IS A PREVIEW OF THE
COMMERCIAL VERSION OR SOME OF
OUR SERVICE STAGES OF A BETA
VERSION OF WHAT THIS SYSTEM
COULD LOOK LIKE.
YOU NOTICE WE SEPARATED THE
SYSTEM.
THE IDEA IS YOU COULD THE
CONCEPT HERE IS COMMERCIALLY YOU
COULD HAVE THE SMALL ROBOT
SYSTEM WOULD THE MOBILE BASE OR
THE ROBOT SYSTEM COULD BE ON A
MOBILE BASE AND COULD BE
MULTIPLE OF THESE SYSTEMS WITHIN
A GYM.
THAT'S WHERE WE'RE GOING HERE
IT'S ONE OF THE FIRST LOOKS OF
THE SYSTEM HERE.
SO, A LOT OF PEOPLE ALWAYS ASK
ME HOW DID YOU END UP WITH HIV
AND STROKE.
I'LL TELL YOU.
WHEN WE WERE BECAUSE OF OUR WORK
WITH MEXICO, WE STARTED
WANTING -- I WANTED A PARADIGM
FOR A GLOBAL SPACE THAT WAS IN A
DEVELOPING COUNTRY TO EXAMINE
THE ROBOTIC ISSUES.
PENN WAS WORKING IN BOTSWANA AND
A NEUROLOGIST COLLEAGUE OF MINE
WAS WORKING IN BOTSWANA AND
SHARED THERE'S A LOT OF ARE
WORK
WORKERS BOTSWANA AND A THIRD
HAVE HIV OR STROKE AND THEY ARE
CAN INFLUENCE EACH OTHER IN
TERMS OF RECOVERY.
AND THERE WAS WORK OUT OF SOUTH
AFRICA SAYING THOSE WITH HIV AND
STROKE ARE ACTUALLY TARGETED IN
TERMS OF THEIR OUTCOMES.
AND PENN IS VERY ACTIVE AND THEN
GOT A GRANT FROM CENTER FROM
AIDS RESEARCH FROM UNIVERSITY OF
PENNSYLVANIA AND I GOT A FULL
BRITE TO DO SOME WORK AND WANTED
TO PROTOTYPE THE UTILITY OF
THERA DRIVE SYSTEM IN BOTSWANA.
AND WE DON'T REALLY KNOW HOW HIV
AND STROKE IS INTERACTING.
WE STARTED -- I HAD A Ph.D.
STUDENT JUST TO LOOK AT THAT
INTERSECTION FIRST IN THE
U.S. AND THEN START TO LOOK AT
IT THERE IN BOTSWANA.
MY Ph.D. STUDENT WAS THE ONE
LOOKING AT COGNITIVE IMPAIRMENT
AND SAID LET'S TAKE WHAT WE'VE
DONE WITH STROKE AND LET'S MAP
UP TO HIV RELATED MOTOR AND
COGNITIVE IMPAIRMENT AND SEE
WHAT WE LEARNED AND DID PUBLISH.
WHY HIV?
ONE THING WE LEARNED WHEN WE
CAME BACK TO AMERICA AND DID OUR
RESEARCH, HIV IS ACTUALLY A
REALLY ISSUE HERE IN AMERICA AS
WELL.
WE HAVE 1.2 PEOPLE LIVING WITH
HIV IN AMERICA.
IT SHIFTED TO A CHRONIC
CONDITION.
HALF THE PEOPLE WITH HIV ARE
OVER 50 YEARS OLD AND THEIR LIFE
EXPECTANCY IS ABOUT 73, 76 AND
BECAUSE OF CO-INFECTION AND
VIRUSES CROSSING THE BLOOD BRAIN
BARRIER HAVE A NEUROLOGICAL
CONDITION WELL KNOWN BUT HARD TO
DEFINE.
IN TERMS OF AND DEFINE BY LIKE A
CRITERIA.
SO WE THOUGHT WELL, CAN OUR
TECHNOLOGY, ONE, HELP US
UNDERSTAND THE POPULATION BETTER
BUT ALSO MAYBE DISAMBIGUATE
BETWEEN HIV AND STROKE.
THEY HAVE MEMORY ATTENTION
EXECUTIVE FUNCTION SIMILAR TO
STROKE.
THEY HAVE MOTOR DYSFUNCTION
BECAUSE THE VIRUS GETS ACROSS
THE BLOOD BRAIN BARRIER AND DO
REPORT INSTRUMENTAL ADL ISSUES.
SO WE THOUGHT THIS IS ACTUALLY A
GREAT POPULATION TO TAKE AND MAP
OUR WORK IN STROKE TOO.
THIS WAS IN U.S.
TURNS OUT NOW EVERYONE IS SAYING
HIV IS A STROKE RISK FACTOR.
AND THERE'S SOME STUDIES THAT
SHOW HIV POPULATIONS HAVE A 1.5
TIMES INCIDENT RATE OF STROKE
MORE SO THAN THOSE WITHOUT HIV.
AND THIS IS IN THE UNITED
STATES.
AND REMEMBER WE THEN STARTED OUR
STUDY IN THE UNITED STATES WITH
THE HOPES OF THEM MAPPING TO
WHAT WE'LL DO IN BOTSWANA.
SO MY STUDENT DEVELOPED TWO
OTHER ANOTHER ROBOTIC TASK.
WE CALL IT THE SPATIAL SPAN TASK
BASED ON PSYCHOLOGY TESTING
WHERE YOU HAVE TO OBSERVE A
PATTERN, MEMORIZE THE PATTERN
AND REPEAT THE PATTERN IN THE
ORDER THAT YOU NOTICE.
THE TWIST YOU ADDED WAS WE HAVE
TO OBSERVE THE PATTERN, MEMORIZE
IT AND MOVE THE ROBOT TO ACQUIRE
THE PATTERN.
SO WE CREATED A SYSTEM THAT
WOULD ALLOW US TO TEST THESE
MULTIPLE ASSESSMENT TASKS
TOGETHER AND THEN NOW UP TERMS
OF PROCESSING HERE WE'RE GOING
THE ROOT MEAN SQUARE AND HERE IN
THE SPATIAL SPAN TASK WE'RE
LOOKING AT MEAN SEQUENCE LENGTH
HOW MANY SEQUENCES COULD YOU
KEEP IN MEMORY AND MAP.
REPEAT THE PROCESS WE DID
CLINICAL ASSESSMENTS NOW WE
INCLUDE HIV SPECIFIC TYPE OF
ASSESSMENTS LIKE COLOR TRAILS
HIV DIM EN -- DEMENTIA AND
ADDED VISUAL AND SPATIAL
TRACKING ACTIVITIES AND THE
DIGITAL SYMBOL CODING IS A TASK.
THESE WERE SPECIFIC THINGS
PEOPLE HAD WITH THE HIV
POPULATION BEFORE BUT WERE NOT
EXCLUSIVE TO HIV AND THE SCALE
IS EXCLUSIVE TOE -- TO THAT
POPULATION AND WANTED TO LOOK AT
THOSE WITH HIV AND STROKE.
WE DID THE TEST AND USED ROOT
MEAN SQUARE AND ACCURACY AS THE
PERFORMANCE MEASURE.
AND TO CALL YOUR ATTENTION TO
THIS GRAPH, IF THE POPULATION
THIS WAS DONE IN THE U.S. AND
PUBLISHED IN THE PAPER IS THE
POPULATION THAT HAD LIMITED
IMPAIRMENT HERE.
YOU CAN SEE OVER TIME WITH DO 15
TRIALS.
THEIR ABILITY TO REMEMBER
SEQUENCES REALLY GO UP TO AS
MUCH AS SIX BUT THEN GET A BIT
FATIGUED AND START DROPPING OFF.
THE POPULATION WITH LOW MOTOR
FUNCTION AND LOW COGNITIVE
FUNCTION DON'T DO VERY WELL IN
TERMS OF MEMORIZING OR DOING
SEQUENCE LENS.
THEY STAY PRETTY LOW BUT THE
POPULATION THAT HAD BOTH MOTOR
COG OR IMPAIRMENT OR COG ARE BUT
CONSIDER RELATIVELY NOT IMPAIRED
MOTORICALLY AND WE COULDN'T
SEPARATE THE TWO HERE AND THEIR
COGNITIVE FUNCTION THOUGH
SOMEONE WAS REPORTING WITH AN
FUG
FUGL-MEYER THAT WAS PRETTY HIGH
THEY WERE FUNCTIONING LOW THE
COGNITIVE IMPAIRMENT WAS MASKING
THEIR MOTOR PERFORMANCE.
WE HAD 21 SUBJECTS WITH HIV.
SIX HAD HIV AND STROKE.
WE WERE TRYING TO SEE IF WE
COULD SEPARATE OUT WA WAS
HAPPENING.
IT'S HARD TO SEPARATE OUT THE
HIV AND STROKE HERE.
AND MORE STUDIES WERE NEEDED BUT
IN TERMS OF MAPPING WHAT WE SAW
IN THE POPULATION TO OUR ROBOT
SCALES USING OUR ROBOTIC SCALES
WE COULD PREDICT THE CLINICAL
SCALES.
THIS WAS IMPORTANT FOR US
BECAUSE IF WE COULD USE OUR
ROBOT AS A DROP IN FOR CLINICAL
SCALES IT COULD THEN BE
BENEFICIAL IN LOW-RESOURCE
SETTINGS.
WE IT TURNED OUT THAT OUR R
SQUARED WERE PRETTY DECENT IN
TERMS OF R SQUARES BEING ABLE TO
PREDICT THE CLINICAL SCALE AND
EXECUTIVE FUNCTION ON THE MOCA
AND ALSO SAW WE COULD WITH OUR
ROBOTIC SCALES PREDICT BOX AND
BLOCK PRETTY WELL WITH STRONG R
SQUARED ASSESSMENT.
SO ONE OF OUR IDEAS WAS THAT IN
A SITUATION WHERE YOU DON'T HAVE
A CLINICAL PSYCHOLOGIST, YOU
DON'T HAVE THE TYPE OF TRAINING
TO DO ALL THE BATTERY OF
CLINICAL ASSESSMENT, COULD OUR
ROBOTIC SYSTEM BE A MEASURE OR
BE A TOOL FOR MEASURING MOTOR
AND COGNITIVE IMPAIRMENT?
WE PROVED IT WAS.
ONCE WE PUBLISHED IN THE U.S. WE
USE THE FUNDS TO START A LAB IN
BOTSWANA.
WE HAVE A LAB THERE AND
RECRUITED AND GOT PERMISSION FOR
HIV AND STROKE SUBJECTS.
WE GOT PEOPLE WE RECRUITED, 19
HIV ONLY, 14 WITH HIV AND
STROKE.
AND WE BASICALLY HAVE BEEN
LOOKING, ONE, WE DO THE CLINICAL
ASSESSMENT AND ALSO DID THE
ROBOTIC ASSESSMENT.
LOOKING AT THE CLINICAL
ASSESSMENT, ONE OF THE THINGS
THAT WAS INTERESTING IS WE DON'T
SEE AND I WANT TO THROW THIS
OUT, WE DON'T SEE A DIFFERENCE
BETWEEN THE HIV AND STROKE
POPULATION IN TERMS OF ANIMAL
INFLUENCES.
THEIR LANGUAGE IN TERMS OF
VISUAL SPATIAL HERE.
IF YOU LOOK AT THE GRAY BAR, THE
GRAY BAR IS WHAT IS CONSIDERED
WITHIN NORMAL LIMITS.
EVERYONE WHOSE DOTS ARE BELOW
MINUS ARE MODERATE TO MILDLY
IMPAIRED.
WHAT IS INTERESTING IS PEOPLE
DON'T THINK OF HIV THE AVERAGE
HIV PERSON AS HAVING MAJOR
COGNITIVE IMPAIRMENT BUT WE'RE
SEEING THAT FROM THIS STUDY HALF
HAD COGNITIVE IMPAIRMENTS ALONG
WITH HIV AND STROKE AND WE SAW
MINOR DIFFERENCE IN INFORMATION
PROCESSING ON PEOPLE WITH HIV
AND STROKE.
THEN WE LOOKED AT THE CLINICAL
ASSESSMENTS FOR MOTOR FUNCTION.
AND MOTOR FUNCTION AND THE
MAJORITY OF THE TIME WITH THE
HIV POPULATION PEOPLE ONLY THINK
OF FINE MOTOR.
WHAT WE WERE SURPRISED TO SEE
WAS THAT THE HIV POPULATION, IF
YOU LOOK AT THE GRAY BAR AGAIN
THE GRAY BARS ARE WITHIN NORMAL
LIMITS AND THIS IS GROSS MOTOR
FUNCTION.
A LOT OF THE HIV POPULATION LAD
GROSS MOTOR ISSUES AND IT WAS
SIGNIFICANTLY DIFFERENT WITH THE
STROKE POPULATION.
THOSE THAT ALSO HAD STROKE.
EVEN ON THE DOMINANT -- SO THE
DOMINANT HAND WERE DIFFERENCES
IN BOTH DOMINANT AND
NON-DOMINANT HAND FOR GROSS
MOTOR FUNCTION AND SAW
DIFFERENCES IN GRIP STRENGTH FOR
THE NON-DOMINANT HAND BUT YOU'RE
NOTICING THE HIV POPULATION
WHETHER THEY HAD STROKE OR NOT
WAS FALLING BELOW THE COMBRA
LINE.
-- BELOW THE GRAY LINE.
THE QUESTION IS HOW DO WE HELP
REMEDIATE THAT.
LET ME MOVE A LITTLE FASTER
BECAUSE OF TIME.
WE ALSO DEVELOPED THE HAPTIC
THERADRIVE AND MAPPED IT TO
BOTSWANA AND COLLECTED DATA ON
THE SUBJECT YOU SAW WE'RE IN THE
PROCESS OF PROCESSING THE
ROBOTIC DATA THERE AS WELL.
I'M GOING TO SWITCH TO THE LAST
SEGMENT QUICKLY THINKING HOW
WE'VE BEEN LOOKING AT CEREBRAL
PALSY BUT IN INFANTS.
WE'RE WORKING WITH THE
CHILDREN'S HOSPITAL OF
PHILADELPHIA.
WE HAVE AN RO1 LOOKING AT HOW WE
CAN DO AUTOMATED ASSESSMENT OR
EARLY DETECTION OF KIDS WITH CP.
THIS IS JUST SOME OF THE
BACKGROUND IN TERMS OF WHAT'S
HAPPENING WITH KIDS WITH CP AND
THE GROSS MOTOR ASSESSMENT IS
THE STANDARDIZED TOOL BUT
REQUIRES A LOT OF TRAINING AND
AGAIN THE TRAINING IS NOT ALWAYS
ACCESSIBLE IN LOW AND MIDDLE
INCOME COUNTRIES.
AND THE GROSS MOTOR ASSESSMENT
IS DONE AT THREE MONTHS AND FOUR
MONTHS BUT WHAT WE'RE STILL NOT
ABLE TO FIGURE OUT IF A KID HAS
DP UNTIL 18 MONTHS TO TWO -- 2
YEARS CAN YOU USE A.I. AND LOW
COST INSTRUMENTED SYSTEMS TO
DETECT CP EARLIER.
WE HAVE DONE WORK IN THIS.
WE WANTED TO IDENTIFY METRICS
ABLE TO DISTINGUISH BETWEEN
TYPICALLY DEVELOPING KIDS AND
THOSE THAT WEREN'T AND DEVELOP
SMART TOYS TO BE USED WITH THE
POPULATION AS WELL.
OUR FIRST ATTEMPT YOU SEE THE
LARGE SYSTEM WAS OUR FIRST PLAY
AT THE NEURODEVELOPMENT SYSTEM
AND BABIES USING COMPUTER VISION
AND PROCESS VIDEOS OF BABIES
PLAYING ALONE OR WITH THE TOY TO
TRY TO UNDERSTAND WHICH FACTORS
COULD BE SENSITIVE TO BABIES
WITH DISABILITY.
WE PUBLISHED THIS WORK AND
SHOWED WE DIDN'T USE MACHINE
LEARNING IN THIS SPACE.
WE USE NAIVE PATIENT SURPRISE
METRIC TO SEE IF WE COULD
SEPARATE THE KIDS LOW RISK,
MODERATE RISK OR HIGH RISK FROM
A POPULATION WE LABELLED HEALTHY
AND SHOWED WE WERE ABLE TO DO
THAT AND THE SECOND ATTEMPT WAS
USING MACHINE LEARNING AND
TRYING TO SEE IF WE CAN DEVELOP
A MACHINE LEARNING PRAYER DI
DIME -- PARADIGM TO DEVELOP LOW
MOTOR ASSESSMENT SCORES.
SCORES YOU GET ON BABIES AT 3
AND 4 MONTHS.
WHAT WAS NICE ABOUT THIS WORKING
WITH CHOC WE GOT ACCESS TO A
THOUSAND VIDEOS OR MORE OF
BABIES.
1060 INFANTS AND RETROSPECTIVELY
COMB
GRABBED THE DATA AND DEVELOP AN
M.L. TOOL AN ALGORITHM TO
COLLECT AND EXTRACT KINEMATICS
AND BUILD AND LEARN AN ALGORITHM
FOR PREDICTING THE SCORES.
WE DID GOOD.
WE FOLLOWED THE PARADIGM OF
HAVING A LOCK BOX SYSTEM WHERE
YOU DID NOT TRAIN ON 187 BABIES.
AND WE WERE ABLE TO SHOW WITH
OUR MACHINE LEARNING ALGORITHM
WE WERE ABLE TO SEPARATE MANY
THE -- WE WERE ABLE TO SEPARATE
THE TYPICAL DEVELOPING BABIES
RELATIVELY ACCURATELY.
WE HAD POSITIVE PREDICTIVE VALUE
OF 64.7.
OUR LAST ATTEMPT WAS THIS ONE.
THIS IS OUR MOST CURRENT SYSTEM
HERE.
WE'RE IN THE PROCESS OF
COLLECTING OVER 300 SESSIONS AND
HAVE EVALUATED THEM AND WE ARE
PROVING THAT VIDEO PLUS PRESSURE
DATA IMPROVES PREDICTION NOT
JUST VIDEO ALONE.
THAT LED US TO THINK ABOUT CAN
WE GET DATA EARLIER AND PREDICT
EARLIER.
I HAVE A Ph.D. STUDENT TRYING TO
UNDERSTAND THE USE OF COPD AND
DEALING WITH THE CHALLENGES THAT
COMES WITH A.I. USE AND DEALING
ONE THE CHALLENGES OF TRYING TO
UNDERSTAND HOW BABIES INTERACT
WITH TOYS.
THIS HAS BEEN KIND OF COOL IN
THAT WE'RE THINKING OF MACHINE
LEARNING AND SOME SENSORS WE
DEVELOPED TO HAVE TOYS ACTUALLY
PREDICT THE INTERACTION WITH
THEMSELVES.
I'M GOING TO STOP THERE SINCE
YOU CAN READ THE TAKEAWAYS BUT I
APOLOGIZE.
I KNEW I'D TALK MORE THAN I
SHOULD.
I'M ALWAYS EXCITED ABOUT THE
WORK THAT WE'RE DOING THANK YOU
FOR LISTENING.
THANKS TO THE FUNDING FROM NICHD
FOR A LOT OF THE WORK WE'VE BEEN
DOING AS WELL THE CENTER FOR
AIDS RESEARCH.
AND
>> THANK YOU, WE HAVE TIME FOR
ONE OR TWO QUESTIONS.
>> WE'VE BEEN USING THE EEG ON
SOME OF OUR SOCIAL ROBOT WORK
AND HAVE BEEN COLLECTING AT EEG
DATA AND LOOKING AT THE RESPONSE
OF BRAIN ACTIVITY RESPONSE TO
OBSERVE ROBOTS DOING TASK AND
STARTING THERE WITH THE GOAL OF
USING EEG IN OTHER WORK WE'RE
DOING BUT WE'RE STARTING WITH AN
AFFORDABLE ROBOT TYPE PARADIGM
THINKING ABOUT WHAT DOES EEG ADD
IF YOU'RE LOOKING AT ROBOTS
DOING TASKS VERSUS NOT ROBOTS
DOING TASK BUT THOUGHT OF DOS
THIS WITH THE STROKE THERAPY
SYSTEMS AS WELL.
>> CAN YOU HEAR ME OKAY?
>> YES, I CAN.
>> SUCH A PLEASURE TO SEE ALL
THE GOOD STUFF YOU'RE DOING.
SO, I LIKE THE BREADTH AND DEPTH
OF IT.
LET ME COME BACK TO SOMETHING WE
WERE TALKING ABOUT BEFORE WHICH
WAS IN THIS ENVIRONMENT YOU'VE
SHOWN ROBOTIC THERAPY CAN BE
PRACTICALLY USED, ETCETERA.
HOW DO YOU SEE USING ROBOT
MONITORING WHICH IS SOMETHING
COVID-19 ONE OF THE UNINTENDED
CONSEQUENCES.
IT'S NOW REIMBURSE ABLE AND
ACCEPTABLE DO YOU SEE THIS AS
DEPLOYABLE AT HOME TECHNOLOGIES?
>> ABSOLUTELY.
WE PLAY AROUND WITH A SOCIAL ROB
BOUGHT I DIDN'T PRESENT HERE
BECAUSE IT WAS A LITTLE BIT OFF
TOPIC AND BEING ABLE TO MONITOR
BABIES IN THEIR HOMES IS TO THE
WAY TO GO USING PEOPLE'S REGULAR
CAMERAS AND FIGURING OUT HOW YOU
CAN COLLECT THAT DATA.
BEING ABLE TO PLACE THE
AFFORDABLE TECHNOLOGIES LIKE THE
ROBOTS IN PEOPLE'S HOMES OR IN
THE COMMUNITY SETTING.
ONE OF THE THINGS I'VE NOTICED
IS THINKING ABOUT HOME VERSUS
COMMUNITY.
I'VE HAD TO DO A LITTLE BIT OF
MAPPING.
IN THE U.S. IT'S EASIER TO THINK
OF PUTTING A ROBOT IN PEOPLE'S
HOME BECAUSE PEOPLE HAVE ACCESS
TO ELECTRICITY BUT WHERE I'VE
WORKED IN OTHER COUNTRIES I
REALIZE I HAVE TO THINK NOT JUST
HOME BUT IN THE COMMUNITY
BECAUSE TAKING THE ROBOT TO
SOMEONE'S HOME MIGHT BE A MAJOR
LUXURY.
BUT THERE MAY BE PRIMARY CARE
CENTERS WHERE YOU COULD SET UP
SOME SYSTEMS SO PEOPLE HAVE
ACCESS WITHIN THE COMMUNITY.
I'LL USE THE WORD COMMUNITY AND
HOME INTERCHANGEABLY BUT IT'S
IMPORTANT TO THINK OF TELEREHAB
ALIGNED WITH THE DEPLOYMENTS.
>> FASCINATING SET OF WORK.
I'M WONDERING -- ROBOTICS HAS SO
MUCH PROMISE.
WE'LL HAVE DEVELOPED ROBOTS FOR
THERAPY FOCUSSING ON DIFFERENT
ELEMENTS OF THERAPY BUT I THINK
ONE OF THE THINGS THAT
INTERFERES WITH THERAPISTS
ACCEPTANCE AND EMBRACING ROBOTS
IS THAT IT TAKES A CONTROL AWAY
FROM THE THERAPIST.
WHAT I MEAN IS THE ABILITY TO
MANAGE AND DO THEIR OWN THERAPY
IN THE WAY GRADING THE REQUIRED
MOVEMENTS AND THE WAY THEY
WOULDN'T.
I HAVE THOUGHT ABOUT THAT AND DO
YOUR ROBOTS HAVE LIKE A
THERAPIST INTERFACE TO DIAL UP
WHAT THEY ARE WANT TO GET OUT OF
THE PATIENTS?
>> YES.
THE ONE DEGREE SYSTEM HAS AN
INTERFACE.
THEY CAN CONTROL THE GAMES AND
MODIFY THE SYSTEM THE WAY THEY
WANT.
WE'VE ALSO EXPLORED ALMOST LIKE
A WIZARD OF OZ ROBOTIC SYSTEM.
I DIDN'T PRESENT THAT IN A
SOCIAL ROBOT WHERE THE THERAPIST
DRIVES THE ROBOT IN THE ROOM AND
MOVES THE HUMANOID ROBOT.
WE EXPLORE THAT AS WELL.
WE EXPLORED -- SO ONE THING I
FIND IS WHEN I GO TO WHEN YOU'RE
IN BOTSWANA THERE'S SO FEW
THERAPISTS THE ISSUE OF THE
THERAPIST WANTING THE FULL
CONTROL IS NOT THERE BECAUSE IN
THE U.S. THERE'S A LOT OF MORE
THERAPISTS, MORE ACCESS AND SO
THERE'S ONE-ON-ONE CARE IS
PROFOUND.
IN WHEN WE THINK OF BOTSWANA THE
PEOPLE DON'T GET ONE-ON-ONE.
THEY DON'T GET CARE SO THE
THERAPIST IS LIKE GET ME
SOMETHING I CAN TAKE CARE OF MY
PATIENTS WITH SO THE ISSUES ARE
DIFFERENT.
BUT HERE IN THE U.S. I'M
THINKING ABOUT ALLOWING THE
THERAPIST TO SET THE THRESHOLD
TO SET THE THRESHOLD OF
COMPLEXITY.
AND YOU'RE RIGHT, IN LOTS OF THE
SYSTEMS THEY ARE HAVE FALLEN
SHORT BECAUSE IT'S BEEN SO
COMPLEX TO SET THEM UP,
ETCETERA.
WE HAVE SIMPLER SYSTEMS THAT
EASIER TO SET UP THAT GIVES THE
THERAPIST THE CONTROL OVER WHAT
THEY ARE WANT TO DO AND I THINK
THAT'S THE PHILOSOPHY AS
ROBOTICISTS WE SHOULD BE MOVING
TOWARDS.
>> TWO QUICK QUESTIONS AND SHORT
ANSWERS.
>> THIS IS SUPER QUICK BECAUSE
IT'S A TEASER.
WE THINK OF COGNITIVE AFFECT ON
MOTOR SENTIMENTS AND DO REMOTE
ASSESSMENTS AND TELEHEALTH.
LET'S SIT NEXT TO EACH OTHER AT
DINNER.
>> OKAY.
>> INTERESTING WORK.
I'M WONDERING IF YOU HAVE TALKED
WITH THE FAMILIES THAT USE THIS
AND THE USABILITY FROM THEIR
PERSPECTIVE AND DO THEY MIND NOT
INTERACTING WITH THE PERSON
ESPECIALLY IN BOTSWANA.
IS THAT AN ISSUE?
>> DO THEY MIND?
>> ARE THEY OPEN TO THE USE OF
THIS AND IS THAT USABILITY AND
DID THE STUDY AND IN A RURAL
AREA WITH A RELATIVELY YOUNGER
CLOUD AND OLDER LESS EDUCATED
CROWD AND THEY WEREN'T REALLY
ENGLISH.
WE FIND THIS IS ACCEPTABLE AND
EXCITED WITH THE MAJORITY OF
PEOPLE SPOKE ENGLISH AND IT AND
RESISTANT THEY SAID THEY WERE
EXCITED IS THE ENGAGEMENT SCALE
AND DO YOU THINK YOU CAN RUN THE
SYSTEM AND THEY'RE LIKE, NO, WE
DON'T THINK WE COULD.
WE'RE TRYING TO TEASE OUT THE
PROS AND CONS.
I SEE ACCEPTABILITY IN BOTSWANA.
HOW DO WE GET IT THERE AND HOW
DO WE EXTEND IT.
BUILDING CONFIDENCE IN THE
SYSTEM.
INTERESTING.
>> THANKS FOR BRING US TO AN
INTERESTING DISCUSSION ABOUT
ACCESSIBILITY.
AND THIS UPDATE IS FROM PREVIOUS
DISCUSSIONS FROM THE BOARD ABOUT
THIS COORDINATING COMMITTEE AND
WE HAVE TARA SCHWETZ AN
EX-OFFICIO.
TARA IS THE NIH DIRECTOR FOR
PROGRAM COORDINATION, PLANNING
AND STRATEGIC INITIATIVE.
SHE HAS SERVED MANY ROLES AT THE
NIH INCLUDING THE NIH ACTING
PRINCIPAL DEPUTY AND ACTING OF
THE NATIONAL INSTITUTE OF
NURSING RESEARCH AND WAS
DETAILED TO THE OFFICE OF
TECHNOLOGY AND POLICY AND
DIRECTOR OF BIOMEDICAL SCIENCE
INITIATIVES STANDING UP EFFORTS
TO START UP THE ADVANCED
RESEARCH PROJECTS AGENCY FOR
HEALTH, ARPA-H AND ADAM POLITIS
IS IN THE DIVISION OF DIVISION
OF PROGRAM COORDINATION PLANNING
AND PROGRAM INITIATIVES IN THE
OFFICE OF THE DIRECTOR FOR THE
NATIONAL INSTITUTE OF HEALTH AND
CURRENTLY A PART TIME DETAILED
TO TO THE WHITE HOUSE OVERS
TECHNOLOGY POLICY SERVING AS
ADVISER FOR DISABILITY AND
EQUITY BEFORE JOINING THE NIH HE
WORKED EXTENSIVELY WITH PEOPLE
WITH DISABILITIES IN A VARIETY
OF CLINICAL ROLES IN HEALTH CARE
AND ACADEMIA.
>> I THINK YOU'RE MUTED.
>> THANK YOU ALL.
THANKS FOR THAT KIND
INTRODUCTION.
I'M ONLY GOING TO STAY 30
SECONDS OR A MINUTE OF OPENING
REMARKS AND PASS IT TO ADAM BUT
TO SET THE STAGE A LITTLE BIT, I
THINK YOU ALL CAN APPRECIATE NIH
IS COMMITTED TO IMPROVING THE
HEALTH AND WELL BEING OF PEOPLE
WITH DISABILITIES.
WE HAVE A LONG HISTORY OF
SUPPORTING DISABILITY RESEARCH
BUT RECOGNIZE MUCH WORK REMAINS
TO FULLY UNDERSTAND HEALTH AND
HEALTH CARE DISABILITIES THAT
AFFECT PEOPLE WITH DISABILITIES.
BACK IN DECEMBER OF 2022 OUR
ADVISORY COMMITTEE TO THE NIH
DIRECTOR WORKING GROUP ON
DIVERSITY HAD A SUB GROUP ON
INDIVIDUALS WITH DISABILITIES
AND THEY PROVIDED A BUNCH OF
RECOMMENDATIONS HOW NIH CAN
FURTHER DISABILITY RESEARCH AND
PROMOTE DISABILITY INCLUSION.
THEN WE ESTABLISHED AN INTERNAL
DISABILITY SUBCOMMITTEE AND
TYING INTO THIS LAST SEPTEMBER
THE DIRECTOR OF MINORITY HEALTH
AND HEALTH DISPARITIES
DESIGNATED PEOPLE WITH
DISABILITIES AS A HEALTH
DISPARITIES POPULATION ELEVATING
THE NEED FOR RESEARCH TO BETTER
UNDERSTAND THE COMPLEXITIES
LEADING TO DIFFERENT HEALTH
OUTCOMES FOR PEOPLE WITH
DISABILITIES.
SO, JUST TO MENTION THOSE TO SET
THE STAGE OF THE BACKGROUND
BECAUSE THIS EMPHASIZES THE
SUCCESS OF THESE EFFORTS AND
MANY MORE WE HEARD TODAY AND
APPRECIATED THE TEASER THIS
MORNING FROM THERESA BUT ALL
THESE WILL REQUIRE A WELL
COORDINATED APPROACH ACROSS ALL
OF NIH AND THAT INCLUDES INPUT
FROM NOT JUST NIH BUT THE BROAD
SPECTRUM OF THE COMMUNITY.
AND SO WE PULLED TOGETHER A TEAM
OF DISABILITY RESEARCH AND
POLICY EXPERTS INCLUDING THOSE
WITH LIVED EXPERIENCE AND THEY
ARE ARE SPEARHEADING SOME NIH
WIDE DISCUSSION ON DISABILITY
RESEARCH TO DEVELOP AN
AGENCY-WIDE STRATEGIC PLAN FOR
DISABILITY RESEARCH.
AND A LOT OF THIS WORK IS BEING
DONE BY THE DISABILITY RESEARCH
COORDINATING COMMITTEE.
AND UPDATE ON WORK BEING DONE.
>> AS TARA MENTIONED OUR
DISABILITY RESEARCH COORDINATION
TEAM WAS FORMED.
WE FORMED IN THE SUMMER.
WE'VE BEEN DOING VARIOUS
ACTIVITIES WORKING HARD TO GET
THINGS GOING TO DEVELOP THE
STRATEGIC PLAN.
IN SEPTEMBER WE ESTABLISHED THE
DISABILITY RESEARCH COORDINATING
COMMITTEE OR DRCC FOR SHORT.
THE CHARGE OF THE COMMITTEE IS
TO PROVIDE NIH-WIDE FORUM FOR
DISCUSSING THE DIVERSE
COMMUNITIES AND HOW NIH CAN HELP
ADDRESS THE NEEDS AND SERVE AS A
CATALYST FOR TRAINING AND CAREER
DEVELOPMENT RESEARCH FOR PEOPLE
WITH DISABILITIES.
AND MORE SPECIFICALLY ONE OF OUR
FIRST MAJOR TASKS IS DEVELOPING
THE NIH STRATEGIC PLAN FOR
DISABILITY RESEARCH THEN
IMPLEMENTING IT AND EVALUATING
IT ON A REGULAR BASIS AND
SERVING THE COORDINATION
FUNCTION TO FACILITATE
PARTNERSHIPS AND COLLABORATIONS
ACROSS NIH AT OUR INSTITUTE AND
OFFICES WITH REGARDS TO
DISABILITY RESEARCH RELATED
ACTIVITIES AND FEDERAL AGENCIES
AND DEVELOP RESEARCH AND
TRAINING ACTIVITIES FOR
LEADERSHIP TO CONSIDER.
SO THE CO-CHAIRS INCLUDE THERESA
CRUZ AND LARISSA AVILES-SANTA
AND YOU SEE THE NUMBER OF
MEMBERS AND INSTITUTES AND
CENTERS AND DPCPSI AND ASPECTS
OF DISABILITY RESEARCH AND MANY
INDIVIDUALS WITH LIVED RESEARCH
AND DISABILITY.
AND THE PURVIEW OF CERTAIN
INSTITUTES, THESE THREE OR SIX
AND COMING FROM THE ANGLE IS
THIS IS RESEARCH FOR PEOPLE WITH
DISABILITIES AND EVERY CENTER
HAS EQUITIES HERE.
WHETHER YOU'RE A PERSON WITH
DISABILITY WHO WANTS TO RECEIVE
CANCER CARE OR DIABETES CARE
THERE'S A LOT OF PERTINENT
CONCERNS WE NEED TO ADDRESS.
THIS INCLUDES A WIDE RANGE OF
INDIVIDUALS THAT NIH SERVES.
THE DEVELOPMENT PROCESS HAS
KICKED OFF IN DECEMBER WHEN THE
DRCC WAS FORMED.
IN OCTOBER WE CREATED A DRAFT
FRAMEWORK FOR THE STRATEGIC PLAN
ON DISABILITY RESEARCH AND
THAT'S BEEN INFORMED BY INPUT IN
A SERIES OF ROUNDTABLE S HELD IN
OCTOBER AND NOVEMBER.
THIS MONTH WILL HOST A TOWN HALL
AND ISSUE A REQUEST
FOREINFORMATION OR RFI TO OB
TINE INPUT ON THE STRATEGIC PLAN
FRAMEWORK.
AND MORE DETAILED INPUT AND
ANALYZE THE INPUT AND RFI AND
USE THAT TO INFORM THE WRITING
OF THE FULL STRATEGIC PLAN WHICH
WILL TAKE PLACE THIS WINTER AND
SPRING.
ULTIMATELY WE PLAN TO RELEASE
THE FINAL STRATEGIC PLAN TO THE
PUBLIC AND PLAN TO KEEP THE
PUBLIC UPDATED VIA WEBSITE AND
COMMUNITY ENGAGEMENT EVENTS
WE'LL BE HOSTING.
SO, AS YOU CAN IMAGINE COMMUNITY
ENGAGEMENT IS KEY TO YOUR
EFFORTS.
WE'D LIKE TO DISCUSS THE PLANS
TO DATE AND PROVIDE INFORMATION
ON THE UPCOMING TOWN HALL AND
RFI.
SO WHEN WE SAT DOWN, COMMUNITY
ENGAGEMENT CAN MEAN A LOT OF
THINGS TO A LOT OF PEOPLE.
SOME PEOPLE REALLY WORRY ABOUT
IT BEING A CHECK BOX EXERCISE
WHERE WE DO ONE EVENT OR A
COUPLE AND THEN DONE.
WE VIEW COMMUNITY ENGAGEMENT AS
A PROCESS.
THE GOALS OF OUR COMMUNITY
ENGAGEMENT ARE TO BUILD TRUST
AND SUPPORT AND HAVE THAT OPEN
DIALOGUE BETWEEN VARIOUS
DISABILITY COMMUNITIES AND NIH.
WE WANT TO UNDERSTAND THEIR
HEALTH AND RESEARCH CONCERNS AND
UNIQUE NEEDS AND PRESENCES
WEATHER RELATED TO OTHER FACTORS
AND RAISE AWARENESS AND PROMOTE
PARTICIPATION IN OUR STRATEGIC
PLANNING PROCESS.
WE DON'T WANT TO DO THIS SOLO.
WE'RE HERE TO PARTNER WITH THE
COMMUNITY AND GET THEIR INPUT
AND THE LAST BULLET POINT WE
WANT THE WIDE RANGE OF INPUT
BECAUSE AS YOU ALL KNOW THE
DISABILITY COMMUNITY DOESN'T DO
IT JUSTICE.
WE'RE NOT A MONOLITH AND IF YOU
MET ONE PERSON YOU MET ONE
PERSON AND GETTING THAT FEEDBACK
IS ESSENTIAL FOR US.
OUR FIRST WERE A SERIES OF SIX
COMMUNITY ROUNDTABLE
DISCUSSIONS.
THESE ROUNDTABLE DISCUSSION
INCLUDED REMARKS IN SUBSEQUENT
DISCUSSION BY PANELISTS AND THEY
WERE OPEN TO THE PUBLIC FOR
VIEWING WITH A PUBLIC Q&A
SESSION AT THE END.
PANELISTS INCLUDED PEOPLE WITH
LIVED EXPERIENCE WITH
DISABILITY, RESEARCHERS,
CLINICIANS AND RESEARCHERS FROM
ADVOCACY ORGANIZATIONS AND
PROFESSIONAL ORGANIZATIONS.
WHAT WE COVERED AT THE
ROUNDTABLES WE PROVIDED
QUESTIONS IN ADVANCE AND
PROVIDED REMARKS AND DISCUSSION.
THESE ARE KEY THINGS WE'RE
INTERESTED IN.
FIRST WHAT ARE THE PRIMARY
SCIENTIFIC OPPORTUNITIES AND
CHALLENGES IN DISABILITY
RESEARCH THAT SHOULD BE
ADDRESSED BY NIH?
HOW COULD THE MISSION STATEMENT
ACCURATELY REFLECT THE
PRIORITIES AND HOW COULD NIH
ENCOURAGE THE NEW FIELD OF
DISABILITY RESEARCH AND SUPPORT
EXISTING RESEARCHERS AND IN
GENERAL PROMOTE DISABILITY AND
INCLUSION IN THE SCIENTIFIC
WORKFORCE AND HOW COULD NIH
IMPROVE INCLUSION IN CLINICAL
TRIALS AT THE EARLY STAGE OF
RESEARCH TOPICS AS WELL AS
FOSTER COLLABORATION WITH
ADVOCACY GROUPS AND PROFESSIONAL
ASSOCIATIONS.
VERY INFORM SESSIONS.
WE RECEIVED RESPONSES FROM
PANELISTS.
FOR THOSE INTERESTED WRITTEN
SUMMARY WILL BE AVAILABLE ON OUR
RESEARCH EVENTS BOOK PAGE AND
WE'LL PROVIDE THAT ONE TO YOU.
OUR NEXT EVENT IS NIH TOWN HALL
AND DISABILITY RESEARCH AND
TAKING PLACE TOMORROW.
IF YOU'RE NOT AWARE YOU CAN
REGISTER AT THE LINK BELOW OR
GOOGLE NIH DISABILITY RESEARCH
AND DPCPSI AND IT WILL COME UP.
TOMORROW WE'RE FORTUNATE TO HAVE
MULTIPLE LEADERS PROVIDING
REMARKS.
SO DR. SCHWETZ AND THEN
DR. BERTAGNOLLI AND THE
INSTITUTE PERSPECTIVE AND FIRST
IS FROM NIMHD, DR. ELISO
PEREZ-STABLE AND DR. CERNICH AND
I'LL PROVIDE AN OVERVIEW SIMILAR
TO WHAT WE'VE DONE HERE AND GIVE
ADDITIONAL INFORMATION REGARDING
THE MANY FRAMEWORK AND HAVE
AMPLE TIME FOR Q&A AND GET INPUT
ON THE STRATEGIC PLAN FRAMEWORK.
SOME PEOPLE HAVE QUESTIONS ABOUT
WHAT WE HAVE BEEN DOING THE PAST
FEW MONTHS, WHAT'S THE PLAN FOR
THE NEXT YEAR AND HOW IS THEIR
INPUT GOING TO BE INCORPORATED.
THAT'S WHAT WE'RE LOOKING TO
TACKLE.
WE PLAN TO ARE AN RFI AND WANTED
TO SEND IT HIT OUT EARLY TO GET
FEEDBACK TO HELP INFORMED IT.
ONE CROSS-CUTTING THEMES IN
STRATEGIC PLANS AND HAVE FOUR
STRATEGIC GOES AND UNDER THOSE
POTENTIAL OPPORTUNITIES.
NOT AN EXHAUSTIVE LIST BUT
EXAMPLES.
WE'RE INTERESTED IN THE PUBLIC'S
FEEDBACK FOR THE THEMES, GOALS
AND OPPORTUNITIES AND
COMPREHENSIVENESS AND THINGS
WE'RE MISSING, OTHER THINGS TO
CONSIDER.
ALSO SUGGESTS FOR METRICS OR
INDICATORS TO MEASURE PROGRESS
IN THE DRAFT STRATEGIC GOALS AND
WAYS WE CAN SHARE OUR STRATEGIC
PLAN AND COMMUNICATE PROGRESS,
SUCCESS AND IMPACT.
THAT IS ANTICIPATED TO GO LIVE
DECEMBER 12.
WHEN IT HAPPENS WE'LL SHARE WITH
THE PUBLIC AS WELL.
SO WE MENTIONED SOME OF BUT
OTHER DECEMBER ACTIVITIES AND
THANK YOU FOR THE INVITATION.
THE TOWN HALL IS TOMORROW.
WE'LL ALSO BE PRESENTING AT THE
NIH ADVISORY MEETING FOR THE
DIRECTOR DECEMBER 12 AND THE
STEERING GROUP WILL PRESENT ON
DISABILITY AND INCLUSION EFFORTS
AND THEN DISCUSSING OUR
DISABILITY RESEARCH EFFORTS.
FEEL FREE TO TUNE IN IF YOU'RE
AVAILABLE AND WE HOPE TO HAVE
THE REQUEST FOR INFORMATION
ISSUED ON THE SAME DAY AND IT
WILL BE OPEN FOR 90 DAYS IS THE
PLAN, SO PEOPLE WILL HAVE UNTIL
MARCH 12th FOR FEEDBACK.
AND ONE THING I HAVEN'T
MENTIONED IS WITHIN DPCPSI WE
DR. THE COUNCIL OF COUNCILS AND
WE'LL -- WE HAVE THE COUNCIL OF
COUNCILS AND HAVE A DISABILITY
WORKING GROUP THERE AND WE HAVE
A PROPOSED ROSTER AND HOPE TO
GET THAT UP AND RUNNING AS SOON
AS POSSIBLE POTENTIALLY HAVING A
MEETING JANUARY OR FEBRUARY AND
GET THE EXTERNAL INPUT FROM
EXPERTS ON THE STRATEGIC PLAN
AND WRITING IT IN THE WINTER AND
SPRING.
I WANTED TO LEAVE AMPLE TIME FOR
QUESTIONS SO FEEL FREE.
THANK YOU ALL.
>> THANK YOU.
THE FLOOR IS OPEN FOR QUESTIONS
.
>> COULD YOU TALK ABOUT THE
COUNCIL OF COUNCILS?
>> IT'S AN ADVISORY COUNCIL AND
MORE BROADLY TO THE NIH
DIRECTOR.
WE HAVE REPRESENTATIVES THAT
BRING TOGETHER A BROAD SPECTRUM
OF INDIVIDUALS AND BACKGROUNDS
FROM ACROSS THE VARIOUS TOPIC
AREAS ACROSS NIH.
MANY OF THE FOLKS ON OUR COUNCIL
HAVE BEEN AT OTHER INSTITUTES OR
CENTERS OR HAVE BEEN ENGAGED
WITH THE INSTITUTES AND CENTERS
AND EACH NOMINATES A PERSON OR A
NUMBER OF THOSE POB BE PUT
FORWARD.
COLLABORATIVE CROSS-CUTTING
ADVISORY GROUP.
>> WHEN YOU'RE DEFINING
DISABILITY BECAUSE ARE YOU ALSO
THINKING ABOUT ACQUIRED
DISABILITY DUE TO A STROKE AND
DISEASE AS WELL?
>> WE'RE THE ADA DEFINITION
INCLUDING THE GROUPS YOU
MENTIONED.
ALSO TOO AS WE DEVELOPED A PLAN
FURTHER THE ISSUES OF DEFINING
WHAT IS DISABILITY RESEARCH OR
WHAT IS DISABILITY HEALTH
RESEARCH.
THESE ARE THINGS WE'RE TACKLING
AS WELL BECAUSE THOSE WHO HAVE
BEEN IN THE REHAB FIELD AND HAVE
A CONCEPTION WHAT DISABILITY IS
BUT WANT TO BE SPECIFIC AND
CLEAR ABOUT WHAT WE'RE COVERING.
SO VIEWING THIS BROADLY THE PLAN
IS TO ADVANCE RESEARCH THAT
PROMOTE THE HEALTH AND WELL
BEING OF PEOPLE WITH
DISABILITIES.
THAT COULD BE TRADITIONAL OR
HEALTH DISPARITIES RESEARCH WITH
DISABILITIES.
WE'RE GOING AT IT BROADLY.
>> THIS IS A RANDOM QUESTION
MORE MORE THERESA.
WHEN YOU TALKED ABOUT THIS YOU
ALSO A SPECIFIC PHOTO UP AND
WONDERING WHERE THAT CAME FROM
AND WHY.
>> THE PHOTO I HAD UP WAS A
PERSON IN A WHEELCHAIR PLAYING
TENNIS.
WE GENERALLY HAVE SOMEONE DOING
SOMETHING ACTIVE.
BUT DISABILITY IS MUCH BROADER.
WE HAVE REPRESENTATION FROM 18
OFFICES AND WE HAVE BEEN GETS
LOTS OF INPUT WHICH HAS BEEN
VERY EYE OPENING.
WE'LL PUT SOMETHING OUT AND
SOMEONE WILL SAY IN MY COMMUNITY
THIS IS HOW WE WOULD READ THAT
AND WE'LL SAY THAT'S NOT WHAT WE
MEANT.
IT'S BEEN VERY EYE OPENING TO
COMPARE HOW DIFFERENT DISABILITY
POPULATIONS WILL READ THINGS AND
HOW WE HAVE TO BE REALLY SURE
WE'RE USING THE RIGHT WORDS AND
APPARENTLY PICTURES TOO.
>> YOU SAID ONE PERSON AND I'LL
SAY WITH A DISABILITY.
I PICKED UP ON THAT ONE BECAUSE
I'M EYE HUGE ADVOCATE AND THERE
ISN'T ENOUGH SUPPORT FOR PARIS
SPORT AND AS MICHELLE WAS
PRESENTING OFTEN TIMES WE USE
GAMES AND SPORTS WITHIN A
THERAPEUTIC FRAMEWORK FOR DOING
THINGS IN REHAB AND THAT DOESN'T
TRANS LIT TO THE PERSON'S
ABILITY TO AND THAT I PIQUED MY
INTEREST AND I'M ON THE COUNCIL
FOR SPORTS AND MAKING SURE ALL
AMERICANS HAVE ACTIVITY AND
SUPPORT IS SOMETHING I'M
PASSIONATE ABOUT.
>> WE'VE DONE QUITE A BIT TO
SUPPORT PHYSICAL ACTIVITY IN
WHEEL CHAIR USERS AND WE DID A
TARGETED FUNDING OPPORTUNITY
ANNOUNCEMENT AND HAVE A COUPLE
GRANTS AND THE CHALLENGE.
WE HAVE A LOT OF APPLICATIONS IF
PEOPLE DOING ADAPTIVE SPORTS.
>> I HAVE A PROVOCATIVE THOUGHT
AND IT GOT ME THINKING ABOUT THE
WORD REHABILITATION AND FOR
THOSE OF US WHO HAVE
DISABILITIES LIKE I'M GOING TO
NEED REHABILITATION FOR THE REST
OF MY LIFE.
BUT THE WAY THE HEALTH CARE
SYSTEM VIEWS REHABILITATION FOR
ME IS THE FOUR MONTHS AFTER MY
INJURY.
SO I THINK -- AND WE WERE
TALKING AT LUX ABOUT MY OWN
WELLNESS JOURNEY COMING BACK
INTO PHYSICAL ACTIVITY AND
DETERMINING WHAT WELLNESS LOOKED
LIKE FOR ME HAD TO HAPPEN
OUTSIDE OF A REHABILITATION
ENVIRONMENT BECAUSE PHYSICAL
THERAPY FOR ME IS BEING ACTIVE
THE REST OF MANY I LIFE AND
NEEDS TO BE A BROADENING IN HOW
WE THINK ABOUT REHABILITATION
AND FOR THE DECEMBER 3 MEETING
WHO IS YOUR TARGET AUDIENCE?
>> WE'RE TRYING TO GET AS MANY
PEOPLE OF THE PUBLIC AS POSSIBLE
AND WE TARGETED RESEARCHERS AND
THAT SPREAD TO THE COMMUNITY AND
CLINICIANS AND SUCH.
THIS IS AS BROAD AS WE CAN GET
IT.
AT THIS POINT WE HAVE OVER 600
PEOPLE REGISTERED AND IT'S STILL
GOING UP.
WE'RE TRYING TO TOUCH AS MANY
PEOPLE AS POSSIBLE.
>> WHEN YOU SAY MEMBERS OF THE
PUBLIC ARE LOOKING FOR DISABLED
PEOPLE OR ACADEMICS?
I'M NOT QUITE SURE WHO.
ONE, WE NEED TO INVOLVE THOSE
AND TWO WE NEED PEOPLE NOT
INVOLVED TO BE EXPOSED TO THE
IDEAS AND LEAVING IT BROAD SO WE
HAVE DISSEMINATED IT THROUGH
DIFFERENT CHANNELS AND NETWORKS
TO TRY TO REACH AS MANY FOLKS
WITH DISABILITIES AS POSSIBLE.
>> THANK YOU.
FIRST THANK YOU FOR WHAT YOU'RE
DOING IN THE WORK.
I THINK IT'S REALLY IMPORTANT.
I WAS PRIVILEGED TO BE PART OF
THE ONE OF THE ROUNDTABLES YOU
GUYS HELD AS A PERSON WITH LIVED
EXPERIENCE AND WAS APPRECIATIVE
OF THE OPPORTUNITY TO SHARE
THOUGHTS AND WON'T GET TO
REITERATING WHAT I SAID IN THE
MOMENT.
ONE THING THAT CAME DO MY
ATTENTION AND THIS GOES TO WHAT
YOU WERE TALKING ABOUT WAS THERE
WERE FOLKS THAT WERE TRYING TO
ASK QUESTIONS BUT IT'S CLEAR
THEY ARE WANTED MORE OF A VOICE
AND REALIZE THEY'RE LIMITED ON
HOW MANY PEOPLE YOU CAN HAVE
SPEAK IN THOSE AND ALL THAT KIND
OF STUFF.
THE QUESTION IS BEYOND THE
ROUNDTABLES AND EVEN IN THE TOWN
HALL TOMORROW WHICH
UNFORTUNATELY IS SCHEDULED FOR
THE SAME DAY AS THIS MEETING BUT
THAT'S ANOTHER POINT.
>> IT STARTS AT 2:30.
WE'RE DONE AT 2:00.
>> WE TRIED.
>> THE QUESTION I REALLY WANT TO
ASK IS BECAUSE THOSE ARE LIMITED
TIMES AND ALSO THERE'S SOME
FOLKS THAT JUST NEED DIFFERENT
WAYS TO ENGAGE WHETHER ENGAGED
TO DISABILITY OR COMBINATIONS
THEY NEED, CAN YOU TALK ABOUT
THE THINGS YOU'RE GOING TO
ENGAGE THE WHOLE COMMUNITY FOR
EVERYONE THAT WANTS TO BE HEARD
IS HEARD THROUGH THE PROCESS.
>> YOU HAVE THE STYLE OF THE
EVENTS AND THE OPPORTUNITY BUT
WE DON'T SEE THAT AS THE ONLY
VEHICLE WE HAVE A DISABILITY
RESEARCH E-MAIL ADDRESS AND
ENCOURAGED PEOPLE TO REACH OUT
AND PEOPLE HAVE REACHED OUT AND
SET UP ONE TO ONE MEETINGS OR
MEETINGS WITH OUR TEAM.
SO PEOPLE REALLY CAN AT ANY TIME
REACH OUT TO PROVIDE INPUT AND
WE'RE HAPPY TO CLASS WITH THEM.
WE'RE ALSO THINKING ABOUT
DIFFERENT TYPE OF EVENTS AND
THINGS THAT ARE MORE REGULAR AND
THERE'S DIFFERENT CONSIDERATIONS
THAT ZOOM MAY NOT BE BEST FOR
AND WE WANT TO DO THAT IN
CONJUNCTION WITH COMMUNITY
PARTNERS, ONE, WE CAN CO-PRODUCE
THE EVENT BUT THAT CAN ESTABLISH
THE RELATIONSHIPS AND GET THEM
CONNECTED TO US AND THEIR
CONSTITUENTS OR MEMBERS AS WELL.
THE EVENTS WE'RE TRYING TO REACH
AS MANY PEOPLE AS POSSIBLE FOR
PEOPLE TO CONTACT US.
THE RFI'S ANOTHER WAY PEOPLE CAN
RESPOND.
THIS TRULY HAS TO BE A DIALOGUE
AND PEOPLE REACH OUT AND RESPOND
AND THE QUESTION'S MORE
APPROPRIATE FOR SOMEBODY AT A
DIFFERENT INSTITUTE AT NIH AND I
DIRECT THEM ON TO THERE AND THEY
HAVE A GOOD DISCUSSION.
WE'RE TRYING TO HELP CREATE THE
ECO SYSTEM AND SERVE THE
COORDINATED CONNECTIVE FUNCTION.
>> IT'S JUST THE BEGINNING.
THAT'S HOW I WOULD FRAME IT.
PART OF WHAT WE WANT TO HEAR IS
HOW WE CAN WORK WITH AND ENGAGE
WITH THE COMMUNITY.
>> STEVE.
>> I'LL CONTINUE WITH WHAT
TIFFANY SAID.
REHABILITATION COMES THE LATIN
WORD TO BE ABLE TO MAYBE
SOMEBODY ABLE AGAIN.
I HAVE A VISION FOR STROKE ONE
DAY WHEN I HAVE TIME TO WRITE AN
EDITORIAL IT'S A CHRONIC DISEASE
TO BE MANAGED LIKE DIABETES OR
EPILEPSY BUT TEND TO TREAT IT AS
A SINGLE EVENT IN TIME AS A
SINGLE RELAB RESPONSE AND
THERE'S AMPLE DATA PEOPLE SLIDE
IN TIME ABOUT A YEAR AND
COGNITIVE DISABILITY ACCRUES, SO
FORTH.
IT MAY BE A SMALL POINT BUT
RIFFING OFF WHAT YOU SAID TO
CONSIDER THAT FOR SOME PEOPLE
LIFE LONG REHABILITATION IS THE
ONLY WAY TO MAINTAIN TRUE
REHABILITATION.
JUST THROWING IT OUT THERE.
>> MICHELLE.
>> HE STOLE MY THUNDER.
SINCE HE'S A NEUROLOGIST IT
SOUNDED BETTER COMING FROM HIM.
>> CMS RECENTLY DESCRIBED TBI AS
A CHRONIC DISEASE.
IT'S POSSIBLE TO GET THE CHANGES
OUT THERE.
WE CAN DO IT FOR OTHER DISEASES
AND SEE, STEVE'S LAUGHING AT ME
AGAIN.
>> YOU'RE SO SWEET.
THAT MAY HAVE COME OUT WRONG.
YOU'RE SO KIND HEARTED.
DOES THIS MEAN CMS WILL FUND
MORE CENTERS TO RECOVER FROM A
STROKE?
>> BABY STEPS.
WE'RE WORKING ON IT.
>> IN TERMS OF PREVENTION AND
HAVING LEGISLATION THAT SUPPORTS
THIS IS WHAT YOU WERE GETTING
AT.
SO PEOPLE CAN AFFORD IT BUT I
THINK THAT COMES FROM THE
RESEARCH THAT WE DO TO SHOW THE
EVIDENCE THAT IT'S NECESSARY.
I FEEL WE'RE GOING IN THE RIGHT
DIRECTION.
WE'RE PUTTING IT ALL TOGETHER.
>> A COMMENT I HAVEN'T HEARD US
SAY AND SURE WHEN I READ THE
BOOK IT WILL COME THROUGH IN
THIS.
WE HAVE AN OPPORTUNITY IN THE
GROUP TO ELUCIDATE THE FACT THAT
NOT EVERYONE IS TRYING TO BE
FIXED OR CURED AND WHEN WE'RE
TALKING ABOUT THE COMMUNITY, WE
ALSO TALK ABOUT PREVENTION
THERE'S NOTHING WRONG WITH
PREVENTION BUT I THINK WE NEED
TO ALSO RECOGNIZE THAT WHEN WE
DISCUSS PREVENTION WHAT WE FEEL
SOME COMMUNITIES FEEL LIKE WE'RE
SAYING AND WE WANT TO ERADICATE
YOU.
YOUR LIVED EXPERIENCE IS ONE WE
DON'T WANT PEOPLE TO HAVE AND I
THINK IT'S A VERY NUANCED
CONVERSATION BECAUSE THE MEDICAL
MODEL OF DISABILITY IS ONE THAT
PATHOLOGIZES IT AND MAKES IT
SOMETHING THAT NEEDS TO BE
FIXED, ERADICATED OR CURED OR
PREVENTED.
HOW DO WE JUXTAPOSE THAT NEED
AND THE DESIRE TO HAVE
TECHNOLOGIES AND THERAPIES AND
REHABILITATION WITH THE
COMMUNITY THAT WE'RE TALKING
ABOUT THAT SAYS WE ARE HERE AND
WANT TO BE SEEN AND THERE'S
NOTHING WRONG WITH US.
IT'S THE LACK OF ACCESSIBILITY
IN OUR COMMUNITY THAT IS
DISABLING.
THAT'S THE HARD CONVERSATION
BECAUSE AS A PHYSICIAN WITH A
DISABILITY IT'S A COMPLICATED
SITUATION ON ONE HAND IT'S OKAY
TO WANT A CURE AND WANT
PREVENTION BUT YOU HAVE TO MAKE
SURE WHILE YOU'RE DOG THAT YOU
ARE RECOGNIZING THE PEOPLE THAT
EXIST IN THE INTERMEDIATE SPACE
WHERE THEY'RE TOO LATE FOR
PREVENTION AND HOW DO YOU CREATE
A WORLD WHERE THEY HAVE ACCESS.
THAT'S SOMETHING TO ME THAT IS
VERY IMPORTANT.
I THINK IT'S MISSED SOMETIMES IN
THESE CONVERSATIONS BECAUSE WE
THEN DON'T PATCH EACH OTHER.
IT'S EITHER ALL ABOUT PREVENTION
AND CURE OR IT'S ABOUT THE
MEDICAL MODEL IS TERRIBLE AND
THEN HAVE TO FIND A HEAVY MEDIUM
AND FOR ME IN PARTICULAR THERE'S
AN AMAZING SPACE TO DISCUSS IT
BECAUSE REHAB IS GOING TO BE
ONGOING.
WE NEED TO MAKE SURE EVERYONE
HAS ACCESS TO BE ABLE TO DO
WHATEVER IT IS THEY CAN DO
WITHOUT FORCING THEM TO FEEL
LIKE THEY ARE SHOULD WANT TO
THEN GET UP AND WALK IF THEY'RE
PERFECTLY FINE NAVIGATING THE
WORLD AS A WHEELCHAIR USER.
THAT'S THE DIFFICULT PART OF THE
CONVERSATION I DON'T THINK WE'VE
HAD AND THE LAST POINT IN THAT
THE COMMUNITY IS UNIQUE WHEN YOU
LIST THE STAKEHOLDERS THERE'S
SOMETIMES AN ASSUMPTION THE
COMMUNITY IS NOT THERE IN THOSE
FIRST FEW.
AND THE COMMUNITY IS ONLY THE
NON-ACADEMICS, THE
NON-CLINICIANS AND
NON-RESEARCHERS AND PEOPLE WITH
LIVED EXPERIENCE INCLUDED IN THE
OTHER STAKEHOLDER GROUPS AND
BOTH SIDES OF THE CONVERSATION
NEED TO REMEMBER THAT.
>> YOU'RE VERY AWARE OF THE WORK
BEING DONE IN THE HAD CENSUS
BUREAU AND AND THERE WAS A WHOLE
DICHOTOMY WHEN YOU TRAUK ABOUT
DISABILITY IS IT DEFINED BY
AFUNCTIONAL OR A LIMITATION AND
GETS TO WHAT YOU'RE SAYING IN
SOMEONE HAS THE IDENTITY AND
REFLECT AND REZ FLATE WITH THE
DISABILITY EXPERIENCE --
RESONATE AND DISABILITY
EXPERIENCE AND DEFINED BUT THE
ADA BUT THEY THEMSELVES DON'T
IDENTIFY AS A PERSON WITH A
DISABILITY AND HAVING THAT
RESPECT IS IMPORTANT AND
SOMETHING WE HAVE TO ALWAYS KEEP
IN THE BACK OF OUR MINDS.
>> WE CALL THIS GETTING BEYOND
THE PLATEAU AND THE PERCEPTION
OF REHABILITATION CARE BEING
APPROACHING A PLATEAU AND THEN
YOU'RE OKAY.
I THINK WHAT CAME OUT OF THAT IS
THAT LIFE'S NOT LIKE THAT.
THERE'S A LOT OF THINGS THAT CAN
HAPPEN AND THOSE OFF RAMPS ARE
CALLING PEOPLE WITH NOT JUST
PEOPLE WITH DISABILITIES ABOUT
OUT THE OFF RAMPS CAN HAPPEN FOR
ANY OF US.
THAT PERSPECTIVE THAT WE NEED
THE CONSTANT SUPPORT AT A LOT OF
LEVELS WE ALL NEED THAT AND HAVE
TO BE PROACTIVE ABOUT IT.
>> IT'S LIKE THEY'VE BEEN LISTEN
TO OUR CONVERSATIONS.
>> I APPRECIATE ALL THE
COMMENTS.
LIKE THERESE IS NOTING AND THE
THEMES AND WE'VE INCORPORATED
ASPECTS.
MANY OF OUR COMMITTEE MEMBERS
HAVE RAISED THESE AS WELL AND
FEEL THE SAME WAY.
IT'S LETTING PEOPLE KNOW IT'S
NOT AS SIMPLE IF THEY'RE COMING
AT IT FROM DIFFERENT ANGLES BUT
THERE ARE GROUPS WE WOULD
CONSIDER HAVING DISABILITIES BUT
THEY DON'T VIEW IT THAT WAY.
OLDER ADULTS MAY HAVE
DISABILITIES AND OTHER
POPULATIONS LIKE FOLKS WHO ARE
NEURODIVERGENT MAY NOT CONSIDER
THEMSELVES DISABLED BUT SOME IN
THAT LARGER BUCKET PLAY AND THIS
IS WHY YOU ENGAGE WITH A WIDE
RANGE OF COMMUNITY AND
INDIVIDUALS TO LEARN THESE.
YOU HAVE TO ACTUALLY PUT IN THE
WORK AND GET TO KNOW ALL THESE
ISSUES AND CONCERNS FROM
EVERYONE.
>> BACK TO ME THAT PEOPLE THAT
DON'T ADHERE AND WE'RE TALKING
ABOUT ADVISORS THEY ARE WERE
THINKING AUGMENTATION AND THEN
THAT BRINGS ALSO HOW WE LOOK AT
SAFETY AND MANAGEMENT AND THEN
TALK ABOUT ORIENTATION.
SO THERE'S A DISCUSSION THAT
NEEDS TO BE MADE IN TERMS OF HOW
THE DEVICES ARE GOOD IN SOCIETY.
THERE'S BEEN SOME DISCUSSION
ABOUT WHETHER -- HOW THEY ARE
WOULD REGULATE IN THAT WAY.
IT'S SOMETHING TO CONSIDER.
>> OKAY.
THANKS FOR THE AFTERNOON
DISCUSSION.
WE'RE GOING TO TAKE A VERY BRIEF
BREAK AND STILL HAVE A LITTLE
BIT MORE COMING ON FOR THE REST
OF THE AFTERNOON.
IT'S COMING UP ON 2:45 AND TAKE
A BREAK AND TRY TO RECONVENE
JUST BEFORE 3:00 P.M. EASTERN
STANDARD TIME TO HEAR ABOUT BOB
SAINBERG AND THE CONVERSATIONS
ON THE CONFERENCE AND NOME
NATIONS FOR THE CHAIR.
SEE YOU AT 3:00 P.M.
BYE.
I JUST WANT TO THANK BOB
SAINBURG THE DOROTHY F AND L.J.F
CHAIR FOR MOVEMENT SCIENCE AND
TECHNOLOGY AND PROFESSOR OF
KINESIOLOGY AND NEUROLOGY AT
PENN STATE.
BOB, IT'S ALL YOURS.
>> IT USED TO BE THE LLOYD AND
DOROTHY F. BUT NO ONE WANTED TO
STAY IT.
WHAT I HAVE IS A TRANSLATIONAL
STORY AND IT'S ALL I GOT.
I'LL END WITH THE REASON TO
TREAT HAND IN STROKE.
THE STORY WILL HAVE THIS KIND OF
DISTRIBUTION OF INFORMATION MOST
WORK THAT GETS DONE IN THE
MECHANISMS IS ANIMALS AND HUMANS
BASIC WORK AND THEN WORK ON
PATHOLOGY BASED ON THAT AND THEN
ULTIMATELY AT THE PEAK OF THE
PYRAMID THE TIP OF THE ICEBERG
IS CLINICAL INTERVENTION
INSPIRED BY MECHANISM AND WHAT
I'M HOPING TO DESCRIBE TO YOU.
I'LL TALK ABOUT MOTOR
LATERALIZATION A TEB DAN --
TENDENCY TO HAVE ONE SIDE FEEL
AND COORDINATE DIFFERENT THAN
THE OTHER SIDE AND LOOK AT THE
MECHANISMS THAT UNDER LIE IT AND
SINCE STROKE TENDS TO IMPAIR OR
DISRUPT BLOOD SUPPLY AND THERE
BE IMPAIR ONE SIDE OF BRAIN AND
LEAVE THE OTHER IN FACT MOTOR
LATERALIZATION BECOMES IMPORTANT
IN UNDERSTANDING STROKE.
TALKING ABOUT MECHANISM OF MOTOR
LATERALIZATION AND WHAT BRAIN
LESIONS REVEAL ABOUT
LATERALIZATION OF MOTOR CONTROL
AND HOW WE TRIED TO APPLY THIS
TO TREATMENT AND STROKE.
BASIC MECHANISMS AND WE KNEW
HUMANS WERE THE ONLY ONES
LATERALIZED AND FOR ANYONE WHO
HAS BACKGROUND IN NEURAL
PSYCHOLOGY YOU'RE AWARE OF BRAIN
LATERALIZATION AND PEOPLE IN
MOTOR CONTROL THOUGH AS CRAZY AS
THAT IS WE DON'T FOCUS ON IT.
AND IT GOES AS FAR BACK AS THE
ADVENT OF VERTEBRATES 500
MILLION YEARS AGO AND NOT NEW IN
EVOLUTION.
THE THINGS SYMMETRICAL ARE WIRED
TO THE PERIPHERY.
AND PRIMARY MOTOR CORTICES AND
NOT EVERYTHING HAS TO BE WIRED
AND THE PART OF THE BRAIN WE
THINK AND RECEIVE WITH IS NO
REASON TO BE LATERALIZED.
AND IT'S A WASTE OF NEURONS AND
PROCESSING.
SO IT'S NOT STRANGE AND THE IDEA
FROM TONS AND TONS OF RESEARCH
ACROSS THE SPECTRUM THE ANIMAL
SPECTRUM YOU CAN THINK OF IT AS
AN EVOLUTIONARY SPECTRUM THAT
HAS REVEALED THAT IN ANIMALS ONE
SIDE SEEMS TO BE ADAPTED FOR
DEALING WITH REGULAR AND
PREDICTABLE STUFF AND THE OTHER
SIDE FOR SUDDEN CHANGES IN THE
ENVIRONMENT INTERNAL OR
EXTERNAL.
THE EFFICIENT CONTROL YOU CAN
THINK OF PREDICTIVE OR OPTIMAL
CONTROL AND ROBUST CONTROL.
THINK OF THAT AS IMPEDENCE
CONTROL.
ONE SIDE OF THE BRAIN OR BODY IS
GOOD AND THE OTHER SIDE ISN'T
GO.
I'LL DO AWAY WITH THAT AND
PRESENT WHAT WE NOW CALL
COMPLIMENTARY DOMINANCE WHERE
EACH HEMISPHERE IS FUNNELED BUT
FOR DIFFERENT ARMS AND WHAT I
WANT TO OUT IN OUT IN ADVANCE
THE HEMISPHERES ARE DOING
DIFFERENT THINGS BUT EACH ARM IS
DOING THE SAME THING JUST
RELYING ON TO THE CONTRALATERAL
HEMISPHERE MORE AND I'LL
EXPLAIN.
I LIKE IT USE THE WORD EFFICIENT
AND ROBUST TO THINK OF EFFICIENT
AS THE TABLE DESIGNED
EFFICIENTLY AND NOT A LOT OF
MATERIALS AND WORKS WELL AND YOU
PUT A 2 YEAR OLD AT IT AND IS
THE TABLE WILL TOPPLE OVER.
IT CAN HANDLE UNEXPECTED
PERTURBATIONS PRETTY WELL.
OUR FIRST EVIDENCE FOR DOMINANT
ARM EFFICIENT PERFORMANCE THIS
COMES FROM WORK IN THE SILLY
SYSTEM AND DESIGN TO RECORD
MOVEMENT WHILE PEOPLE MOVE TO
SIMPLIFIED TASKS.
OVER 20 YEARS AGO WE FOUND THE
NON-DOMINANT ARM AND IF YOU HAD
SO MOVE FAST TO TARGETS,
NON-DOMINANT ARM WOULD MAKE IT
AND MAKE CURVATURES IN THE HAND
AND THE DOMINANT WOULD MAKE LESS
CURVATURES AND MOVE AT THE SAME
SPEED AND DISTANCE BECAUSE
THAT'S THE WAY WE PROGRAM THE
TASK BUT THE ACCURACY WAS NOT
DIFFERENT BETWEEN THE ARMS AND
IF WE LOOK AT THE DOMINANT ARM
AND GOING HERE TO HERE FAST YOU
HAVE TO ACCELERATE YOUR WHOLE
ARM.
IF YOU PULL YOUR ELBOW IN A
LITTLE BIT YOU HAVE LESS
INERTIA.
IF YOU ALLOW YOUR ELBOW TO FLY
OUT IT'S MORE EFFICIENT AND THE
ADVANTAGE IS IF I ASK YOU TO GO
TO THE WHITE BOARD AND DRAW A
CIRCLE WITH THE DOMINANT AND
NON-DOMINANT ARM THE
NON-DOMINANT WILL LOOK MORE LIKE
AN OVAL AND WHAT YOU HAVE DOWN
HERE IS THE HAND PATH CURVATURES
AS A FUNCTION OF INTERACTION
BETWEEN THE SEGMENTS THE OTHER
IN BLUE IS ENSLAVED TO THE
NON-DOMINANT ACTIONS AND CAN
MOVE INDEPENDENTLY.
THAT WAS OR FIRST FORAY INTO
THIS GARBAGE.
AND GO FROM THE VIEW OF A GOOD
AND BAD HEMISPHERE IN THE LEFT
IN MOST PEOPLE IS WHERE YOU
STORE AND USE TO DEAL WITH WORDS
AND SYNTAX AND THE RIGHT
HEMISPHERE IN THE POSTERIOR
CORTEX YOU USE FOR INKNOWNATION
BEING -- INTONATION AND THE
RIGHT IS DOMINANT FOR OTHER
THINGS.
WE WENT ON A SEARCH FOR AND
THOUGHT THE NON-DOMINANT ARM IS
GOOD AT ROBUST CONTROL.
IN THIS PARTICULAR STUDY WE USED
A ROBOT ARM AND GAVE FORCES WERE
EITHER PREDICTABLE, A LITTLE
MORE COMPLEX OR VERY PREDICT AND
AND WE FOUND AN INTERACTION
BETWEEN ARM AND FORCE FIELD.
THE NON-DOMINANT DID BETTER THAN
THE DOMINANT IN THE NON
PREDICTABLE FIELD.
THE DOMINANT CONTROLLER KEPT
TRYING TO PREDICT AND WHY IT DID
WORSE.
THE IT LOOKED BETTER AT
STABILIZING STUFF IF YOU THINK
ABOUT IT IN EVERY DAY TERMS AND
MOVING STUFF.
SO WE DID THIS BILATERAL TEST
WITH AND TRYING TO IMPLEMENT A
REASONABLY DESIGN TASK TO
QUANTIFY THINGS COULD WE DO THAT
AND ATTACHED THE SPRING INSIDE
THE ARMS AND HELD THE SPRING WIN
ONE HAND AND MOVED TO TARGETS
WITH THE OTHER HAND.
WHEN THE LEFT ARM REACH IT
DOESN'T REACH AS WELL STRAIGHT
AND SMOOTH AS WHEN THE RIGHT ARM
REACHED ON THE RIGHT BUT WHEN
THE RIGHT ARM STABILIZED IT
DIDN'T DO NEARLY AS WELL AS WHEN
THE LEFT ARM STABILIZED.
AND ROBUST CONTROL FOR STABILITY
AND THE OTHER ONE FOR PREDICTIVE
CONTROL OR DYNAMICS WASN'T SO
CRAZY IT SEEMED.
AND CONTRIBUTING A UNIQUE
PROCESS TO EACH ARM WHICH SHOULD
BE ABLE TO MODEL THIS AND THE
MODEL SHOULD BE GIVING EACH ARM
THE SAME CONTROLLERS AND
CHANGING THE DISTRIBUTION OF
THAT CONTROL AND WE HAD AND AND
CONTROLLER THAT SPECIFIES A
STIFFNESS AND COMBINE THESE
THINGS AND OUR OPTIMAL
CONTROLLER CARED ABOUT ENERGY,
POSITION AND HOW ACCURATELY IT
GOT SOMEWHERE AND HAD TO STOP AT
THE END.
AND WE ADDED THESE TOGETHER IN
SEQUENCE AND FIT THEM TO REAL
MOVEMENT.
UP RED YOU SEE THE THING THAT
CAN PREDICT AND THIS SIMPLE
IMPEDENCE CONTROLLER IN YELLOW
AND THE MOVEMENTS START WITH NO
IMPEDANCE AND OPTIMAL CONTROL
BECAUSE THE OPTIMAL CONTROLLER
IS PREDICTIVE.
YOU CAN START MOVEMENTS OUT WITH
IT.
THE IMPEDANCE CONTROLLER YOU
HAVE TO SPECIFY THE END POINT.
YOU HAVE A TRAJECTORY THAT LOOKS
MORE CURVED TO ONE STRAIGHTER
AND IF WE FIT THESE TO REAL
MOVEMENT AND THE DOMINANT ARM
FITS THE CONTROLLER THAT RELIED
ON PREDICTIVE CONTROL THE WHOLE
TIME.
AND FOUND IT'S NOT THE CRAZIEST
THING YOU AND HAD PREDICTIVE AND
OPTIMAL IMPEDANCE CONTROL WITH
FEED CONTROL.
I'VE DONE A BUNCH OF WORK WITH
POST DISORDER VIRALLY PEOPLE END
UP WITH LARGE OF LOSS DIAMETER
SENSORY FIBERS CALLED
DEAFFERENTATION AND YOU CAN'T
FEEL WHERE YOUR ARMS BUT DON'T
HAVE PROPRIOCEPTIVE PERCEPTION.
WE LOOKED AT THE LARGE FIBER
SENSORY NEUROPATHY AND LOOKED AT
DIFFERENCES BETWEEN THE WAY IS
THE CONTROLLED HER LEFT AND
RIGHT ARM.
TO SHOW YOU WHAT AT THE TIME IN
THOSE DAYS CONTROL LABELLED
NORMAL HERE HAS A BIG
DISTRIBUTION OF LARGE FIBERS
JANET DOES NOT AND VERIFIED LOSS
OF SENSATION THROUGHOUT HER ARMS
AND MUSCULAR BODY AND THIS IS
PER PERFORMING -- I KNOW IT'S A
TERRIBLE TO DO BUT SHE WAS
GREAT.
SHE'S TRYING TO DO A SLIDED PEG
BOARD.
YOU CAN SEE SHE LOOKED AT THIS
AND DYSFUNCTION AND THIS
INFORMATION FROM LARGE FIBERS
AND ARE THE DIFFERENCES EXIST
WITH A FEED FORWARD SYSTEM?
IF WE DON'T LET HER SEE WHAT
SHE'S DOING SHE GETS NO FEEDBACK
FROM HER ARMS AND DOESN'T KNOW
WHERE THEY ARE.
EVERYTHING WE SEE HAS TO BE FEED
FORWARD.
PHILADELPHIA MAKES FANTASTIC
BEER THE MOST FAN TRAFTIC OF MY
TRAINEES.
AND A WHAT SHE DID WITH THE
DOMINANT ARM IS MOVE STRAIGHTER
TO THE TARGET NOT GREAT BUT THEN
JUST DRIFT AS THOUGH SHE DOESN'T
HAVE A SPRING AT THE END.
THAT BLEW US AWAY.
YOU COME UP WITH THE HYPOTHESIS
TO EXPLAIN IT AND THE DON'T
REALLY BELIEVE IT AND THEN GET A
FINDING LIKE THIS.
MAYBE WE'RE NOT TOTALLY WRONG WE
COULDN'T HAVE PREDICTED IT AND
OUR FRIEND DID A SIMULATION TO
SEE CONSTANCE FROM THE PREVIOUS
MODEL TO THE INDIVIDUAL AND WHAT
WE WOULD END UP WITH AND INDEED
DID A GOOD OF JOB OF PREDICTING
THE TYPE OF DEFICITS SHE HAD
WITH HER LEFT AND RIGHT ARM.
HOW IS THIS REFLECTED BY BRAIN
PROCESSES OR DETERMINED BY BRAIN
PROCESSES.
THE NEXT THING WE ASK IS IF
WE'RE RIGHT ABOUT ONE HEMISPHERE
DOING SOMETHING DIFFERENT IN
ANOTHER HEMISPHERE AND THIS IS
THE IMPORTANT THING.
OUR MODEL IS THAT YOU'RE RIGHT
HAND IF YOU'RE A RIGHT HANDER
AND I'LL USE THAT EXAMPLE IS
DRAWING ON BOTH HEMISPHERE BUT
BY THE CONTRALATERAL HEMISPHERE
MORE I DON'T KNOW WHY BUT I CAN
SPECULATE AND THE NON-DOMINANT
HAND IS RELYING ON ITS
CONTRALATERAL HEMISPHERE MORE.
SO THE RIGHT IS DOING IMPEDENCE
CONTROL AND WHEN YOU HAVE A
STROKE OF THE MIDDLE CEREBRAL
ARTERY YOUR EUPHEMISTICALLY LOSE
ONE HEMISPHERE AND THE PREDICT
IS HAVING DEFICIT IN BOTH ARMS
NOT JUST BOTH BUT IN TERMS OF
SPECIFICITY AND ABNORMAL
SYNERGIES BUT THE IPSO REGIONAL
ARM SHOULD HAVE DEFICITS.
I USED TO BE AN OCCUPATIONAL
THERAPIST.
ANYBODY WHO WORKED IN REHAB
KNOWS THIS IS NOT A CRAZY IDEA
BECA
BECAUSE AND IT'S USUALLY
ATTRIBUTED TO COGNITIVE
PERCEPTUAL POSTURAL OR OTHER
TYPE OF DEFICITS.
I WAS WORKING WITH KATHY HOLLAND
A RENOWN NEURAL PSYCHOLOGIST AND
ONE OF MY FIRST STUDENTS IN
ARIZ
ARIZONA THESE PEOPLE WERE SIX
MONTHS TO 10 YEARS POST STROKE
AND KEEP IN MIND THEY HAD BEEN
USING AND THESE ARE PEOPLE WITH
MODERATE TO SEVERE PHORESIS AND
USING THEIR DOMINANT HAND TO
CARRY OUT ACTIVITIES FOR MONTHS
TO YEARS AND THEY ARE HAD
IDENTIFIABLE DEFICITS AND THE
LEFT HEMS HEMISPHERE DAMAGED
PATIENT SHOWED THE WILDLY LARGE
CURVATU
CURVATURES AND THEY HAD TROUBLE
STOMP THAT'S IMPEDANCE CONTROL.
AT THE BOTTOM YOU CAN SEE LESS
HEMISPHERE DAMAGE THE DOTS
REPRESENT THE POSITION OR THE
VARIABILITY THE SIDES OF THE
ELLIPSES THE VARIABILITY STOP
BUT THEY STOPPED PRETTY WELL.
ON THE RIGHT SIDE THIS IS WITH
THE LEFT SIDE -- SORRY, THE
RIGHT SIDE.
LET ME START OVER AGAIN.
THIS SIDE OF THE PICTURE LEFT
HEMISPHERE DAMAGE HAD TROUBLE
STARTING BUT STOPPED WELL AND
RIGHT HEMISPHERE DAMAGE THEY
STARTED WELL BUT HAD TROUBLE
STOPPING.
IT FITS THE SCHEME OF IMPEDANCE
VERSUS PREDICTIVE CONTROL.
NEXT THING IS WHAT PARTS OF THE
BRAIN MAY BE SPECIALIZED FOR
THIS.
SINCE WE HAVE A RENOWN
NEUROLOGIST HERE I'LL GIVE YOU
WOE HAD WE HAVE A FRONT, BACK,
LEFT AND RIGHT SIDE.
WE HAVE A HANDFUL OF PATIENTS
WITH RIGHT FRONTAL OR RIGHT OR
LEFT PARIETAL.
WE COMPARED THEM IN THE TASK
WHERE THE CURSER GOES LIKE IT
GOES IN A DIFFERENT DIRECTION
THAN YOUR HAND AND YOU
EVENTUALLY AFTER HUNDREDS OF
MOVEMENTS AND ADAPT FOR IT IT'S
CALLED A VISUAL MOTOR ROTATION.
IT'S BEEN STUDIED UNTIL THE COWS
COME HOME AS WE SAW IN
PENNSYLVANIA.
IF YOU HAVE PARIETAL DAMAGE YOU
DON'T ADAPT.
SOW NOT ONLY ARE YOU WORSE AT
DOING A THING OF THE HEMISPHERE
BUT BETTER AT DOING WHAT THE
OTHER HEMISPHERE DOES.
LIKE A COMPETITION THING BETWEEN
THE HEMISPHERE AND IF YOU HAVE
FRONTAL YOU LOOK LIKE THE
PARTICIPANTS IF YOU HAVE RIGHT
PARIETAL DAMAGE YOU HAVE
PROBLEMS GETTING TO THE TARGET
STOPPING ON THE TARGET AND HAVE
A DOUBLE ASSOCIATION BETWEEN THE
HEMISPHERE AND TYPE OF DEFICIT
YOU HAVE WHICH IS PRETTY GOOD
EVIDENCE WE'RE NOT FAR OFF.
NOW, CLINICAL TRANSLATION ONE
HEMISPHERE IS GOOD AT PREDICTING
AND DOING AN OPTIMAL ALGORITHM
AND THE OTHER SIDE GOOD AT
STABILIZING AND YOUR CUTTING
YOUR BAGGETTE AND IT'S NOT
MOVING AND SWITCH YOUR HANDS.
WE DID STUDY WITH PATIENTS WHO
HAD HAD A STROKE, STROKE SURVIVE
AND MANY HAD SEVERE DEFICITS IN
THE CONTRALATERAL ARM.
WHAT'S THAT MEAN?
IT MEANS THE IPSO LESIONAL ARM
THE ONE THAT'S SUPPOSED TO BE
GOOD WE IDENTIFIED DEFICITS.
FOR THEM THROUGH THEIR DAY
THAT'S THE RARM THEY'RE RELYING
ON.
-- ARM.
THEY'RE SIGNIFICANT IN TERMS OF
BEING ABLE TO MOVE EFFICIENCILY.
IF YOU CAN'T POUR A GLASS OF
JUICE YOU WON'T DO IT YOURSELF.
IF YOU CAN'T PUT EFFICIENTLY PUT
TOOTHPASTE ON THE TOOTH BRUSH
YOU WON'T DO IT SO THAT GOT US
INTERESTED IN STUDYING THIS
PHENOMENON.
AND THERE'S A THIRD STUDY I'LL
DESCRIBE QUICKLY.
THIS IS CANDY WHO IS BEEN A LAB
DIRECTOR WITH ME FOR A LONG TIME
AND DAVID GOOD OVER THERE WHO
RETIRED AND DAVID WEGSTAFF NOT
ONLY A STATISTICIAN BUT PERSON
WITH LIVED EXPERIENCE AND I SAY
WAS BECAUSE UNFORTUNATELY HE
PASSED AWAY.
IF WE TOOK STROKE SURVIVE AND
CATEGORIZED THEM AS MODERATE OR
MILD OR SEVERE BASED ON THE
FUGL-MEYER SCORE AND SEVERE WAS
UNDER 29 AND THE FUGL-MEYER
MEANS YOU CAN'T OPEN AND CLOSE
YOUR HANDS VOLUNTARILY AMONG
OTHER THINGS.
WE LOOKED AT THIS CLINICAL TEST
AND THAT'S A TEST WHERE YOU JUST
MANIPULATE A BUNCH OF EVERY DAY
OBJECTS.
I LOVE IT BECAUSE IT'S SOMETHING
BETWEEN A CLINICAL TEST AND ADF,
ACTIVITIES OF DAILY LIVING AND
PICKING UP SMALL ITEMS AND ALL
WE'RE DOING IS TIMING IT.
YOU'RE NOTE GOING TO GET A GOOD
TIME IF YOU'RE INTERESTING
TROUBLE DOING IT.
ANYHOW, I HAPPEN TO LOVE THIS
TEST FOR A QUICK TEST OF
DEXTERITY.
THE WORSE YOUR CONTRALATERAL
HAND IS THE WORSE YOUR IPSO
LATERAL HAND IS.
THE WORSE YOUR CONTRALATERAL
HAND IS THE MORE YOU HAVE TO USE
YOUR IPSO LATERAL HAND AS YOUR
SUPER CONTROLLER.
ALL THE THINGS WE NORMALLY DO
BILATERALLY THEY HAD TO DO
UNILATERALLY.
IT COMPOUNDS THE PROBLEM.
CAN WE DO ANYTHING TO IMPROVE
IT?
WE DESIGNED A TASK TO DO VIRTUAL
REALITY STUFF WE THOUGHT
FOCUSSED ON EITHER RIGHT OR LEFT
HEMISPHERIC DEFICIT AND DID
DEXTERITY TESTS.
WE DID THIS IN RIGHT AND LEFT
HEMISPHERE STROKE SURVIVE.
WE TOOK TWO BASELINE TESTS AND
DID THREE WEEKS OF TRAINING IN
THE PILOT STUDY ONLY 13 STROKE
SURVIVORS AND DID A TRAINING
PERIOD THAT IS SUPPOSED TO BE A
CROSSOVER STUDY DIDN'T MATTER
BECAUSE COVID HAPPENED AND WE
COULDN'T DO THE WHOLE THING.
I'M ENDING UP SHOWING YOU ONE
ARM AND BASELINE TRAINING AND
RETENTION.
WHAT WE GOT WAS THE NON- ARM GOT
BETTER AND FUNCTIONAL
SELF-REPORT MEASURE THE
RESOLUTION IS TERRIBLE AND
YOU'RE BASICALLY ASKING DO YOU
NEED HELP WITH A, B OR C.
TOILETING AND FEEDING, ALL THESE
THINGS.
THEY ACTUALLY REPORTED THEY GOT
BETTER WITH THAT.
THAT WAS EXCITING.
AND THE FUGL-MEYER AND IT SHOWED
A LITTLE BIT OF IMPROVEMENT.
NOT CLINICALLY SIGNIFICANT BUT
THE GOOD THING IS IT DIDN'T GET
WORSE.
IF YOU LOOK AT THE IDEA BEHIND
CIMT CONSTRAINT INDUCED MOTOR
THERAPY THAT STEVE WOLF WAS AN
ORIGINATOR AND PROPONENT OF YOU
COULD SAY IF WE'RE TREATING THE
WRONG ARM MAYBE THE
CONTRALESIONAL ARM WILL GET
WORSE.
IT DIDN'T, IT GET BETTER
PROBABLY BECAUSE PEOPLE WERE
GETTING UP AND DOING MORE.
THEN WE GOT FROM FROM THIS
WONDERFUL AGENCY THE RESOURCES
TO BE ABLE TO DO MORE SYSTEMATIC
STUDY WITH MORE PEOPLE WITH A
BASELINE PERIOD AND FIVE-WEEK
TRAINING PERIOD AND HAD THREE
WEEKS LATER SHORT TERM AND THEN
LONG-TERM RETENTION.
THIS IS THE MAJORITY OF OUR
TEAM.
PEOPLE CAME AND WENT.
THESE ARE OUR GENERAL RESULTS.
WE GOT AN IMMEDIATE IMPROVEMENT
ON THE TAYLOR HAND FUNCTION AND
GOT THE IPSO ARM MORE COORDINATE
IN 15 SESSIONS OF TREATMENT.
THE FUGL-MEYER DIDN'T GET WORSE
BUT NEITHER THE INDEPENDENCE
MEASURE GOT BETTER WE GOT THIS
ONE GOOD ARM MORE COORDINATED
BUT IT DIDN'T AUTOMATICALLY WE
INTENTIONALLY DID NOT HAVE A
TRANSFER PART OF THERAPY.
WE DIDN'T HAVE PEOPLE WORKING ON
ADLs AFTER THIS.
IT WASN'T A MISTAKE BECAUSE WE
GOT INFORMATION FROM THIS AND
THIS TELLS US YOU'RE NOT GOING
TO AUTOMATICALLY GET BETTER AT
THE LEVEL THE TESTS CAN TEST.
YOU'RE NOT AUTOMATICALLY GOING
TO GET BETTER.
BY THE WAY, OUR CONTROL GROUP
WAS TRADITIONAL TREATMENT OF THE
CONTRALESIONAL ARM BY OTs.
AND THAT MEANT BASICALLY
REACHING.
WE INSTRUCTED THEM NOT TO DO ADL
WHICH IS REALLY HARD TO TELL AN
OT TO NOT DO.
WHEN WE LOOK AT OUR TIME, THE
CONTROL GROUP DIDN'T GET
SIGNIFICANTLY BETTER OR WORSE.
THERE'S A POST TEST AND THE
ONE-MONTH POST TEST.
IT WASN'T SIGNIFICANT.
THE IMPROVEMENTS IN THE IPSO
LATERAL ARM LASTED MONTHS AND
COVID INTERVENED WITH A BUNCH OF
OUR PARTICIPANTS.
SO WE SEE THIS AS STRONG
FINDINGS EVEN THOUGH PEOPLE HAVE
LOST THE ABILITY TO GRASP AND
RELEASE FUNCTIONALLY WITH THE
CONTRALESIONAL ARM AND EVEN
THOUGH THEY'VE BEEN DOING THEIR
ADLs AND DAILY STUFF THEY DO
WITH THEIR IPSO -- IPSILESIONAL
ARM AND THE TRANSFER PACKAGE.
AND TAKE THE NEW FOUND SKILLS
AND GET PEOPLE TO DO ADLs WITH
THEM.
AND THE REASON THIS IS HERE IS
IT'S THE WRONG PEN AND THE WRONG
TROUSERS.
VERY FEW KNOW WHAT I'M TALKING
ABOUT BUT I USED TO START OUT
WITH A SLIDE SAYING IT'S THE
WRONG ARM, BOB.
YOU'RE LOOKING AT THE WRONG ARM.
IT'S NOT FAR FETCHED TO IMAGINE
WITH OUR RESULTS THAT SHOW
SIGNIFICANT CHANGES IN
COORDINATION OF THE IPSILESIONAL
ARM IN PATIENTS WITH SEVERE
PHORESIS WE CAN FOCUS ON ADL AND
PEOPLE WOULD BE ABLE TO
INCORPORATE THESE IN TO THEIR
LIVES AND BECOME MORE
FUNCTIONAL.
I WANT TO TELL A QUICK STORY
ABOUT THE FIRST PILOT STUDY WE
DID.
WE WOULD ASK AN OPEN ENDED
QUESTION WHICH WE SHOULD HAVE
DONE BUT WE NEGLECTED TO PUT
INTO THE LARGER STUDY WHICH WAS
IS THERE ANYTHING YOU CAN DO NOW
YOU COULDN'T DO BEFORE?
AND SO THERE WAS A PATIENT AND
HIS PARTNER WIFE HIS CARETAKER
OR HIS HELPER AND SOON AS I
ASKED THAT QUESTION THE WIFE
WENT LIKE THIS?
I DON'T HAVE TO GO IN THE
BATHROOM ANYMORE.
LITTLE TINY CHANGES IN
COORDINATION CAN LEAD TO MASSIVE
QUALITY OF LIFE CHANGES FOR
INDIVIDUALS.
I ENDED EARLY.
THAT'S GOOD.
ANY QUESTIONS?
>> STEVE.
YOU'RE THE VERY LAST COMMENT
ANTICIPATE THE QUESTION I HAVE
WHICH IS WHICH ADLs OR JEPSON
TAYLOR SUB TEST ARE MOST ED BY
THE LAND DEFICIT.
>> RETROSPECTIVE WOULD BE GREAT.
IN THE STUDY WE'RE SIFTING
THROUGH AND SEEMS LIKE THE
CHECKER STACKING, THAT MATTERS.
THE LATENT HAD HEAVY OBJECT
MATTERS AND THE CARD TURNING
MATTERS.
SURPRISINGLY TO US THE SIMULATOR
FEEDING WHERE YOU MOVE A BEAN ON
A SPOON DOESN'T SEEM TO MATTER
AS MUCH.
FOR WHATEVER REASON THERE ARE
SOME THAT DO AND SOME THAT DON'T
MATTER AS MUCH.
>> KATHLEEN AND THEN MICHELLE.
>> COMING FROM THE MS
PERSPECTIVE DOES THIS
COMPLIMENTARY CHANGE?
GOOD THE VIEW IS THAT THERE ARE
TWO IMPORTANT ASPECTS.
AND BY THE WAY, LOTS OF PEOPLE
WHO HAVE DONE BASIC MOTOR
CONTROL WORK HAVE DISTINGUISHED
PREDICTIVE AND OPTIMAL CONTROL
FROM IMPEDANCE CONTROL.
SOME HYPOTHESIZED ALL WE DO IS
ONE OR THE OTHER BUT THE TWO
KEEP COMING UP IN MOTOR CONTROL
AND IF YOU DO ROBOTIC
PROGRAMMING YOU TYPICALLY DO A
COMBINATION OF THESE THINGS.
YOU WANT TO STOP NOT WITH
SPECIFIC FORCE CONTROL BUT
IMPEDENCE.
IT'S THESE ARE ALGORITHMS TO
HANDLE THE IF YOU PHYSICS OF
MOVEMENTS AND CATEGORIZED IN
DIFFERENT HEMISPHERE
EVOLUTIONARY -- TO ME WHATEVER
LED TO IT WHICH IS PROBABLY SOME
GENETIC TWEAK EARLY ON TO
DISTINGUISH THE DEVELOP THE
ALGORITHM IN OF ONE HEMISPHERE
THE INTERHEMISPHERIC
CONNECTIVELY WITH MOTOR SYSTEMS
AND OTHER SENSORY SYSTEMS IS THE
SAME.
IT TOOK TWO HEMISPHERES THAT
BECOME SPECIALIZED.
THE LESION YOU GET WILL DEPEND
ON WHERE YOU LESION THE NEW
HEMISPHERE.
WE DON'T HAVE THE DATA.
WE SUSPECT LEFT HANDERS HAVE A
ONE AND IF ONE HAS A
PROGRESSIONIVE DISORDER IT WOULD
ALL DEMAND ON WHERE IF YOU HAVE
TROUBLE WITH MOTOR SKILLS AND
PREDICTIVE CONTROLS.
WE'RE AMID STUDY USING
NON-INVASIVE BRAIN STIMULATION
TO EKE OUT WHAT THE MECHANISMS
ARE AND SOMETHING LIKE MS WHERE
YOU DON'T KNOW WHERE IT'S GOING
TO HIT I THINK IT'S NOT GOOD
ENOUGH TO SAY WHAT HEMISPHERE
BECAUSE IT DEPENDS ON WHERE IN
THE HEMISPHERE AND IT'S LIKE
INFERIOR LOBULE CLOSE TO THE
ANTERIOR PART OF THE
INTERPARIETAL LOCUS YOU'LL END
UP --
>> AND THE OTHER QUESTION I HAVE
DID YOU CONTROL FOR CHANGES IN
STRENGTH OVER TIME.
DID IT HAVE TO DO WITH CHANGES
IN STRENGTH?
>> WE DID NOT.
WE ASSUME WHETHER IT'S IN THE
FIRST STUDY WE DID MEASURE
STRENGTH AND THE IMPROVEMENTS
WENT TO OVER ALL STRENGTH AND
ASSUMED THE ABILITY TO SUS STAUN
THE CHANGES -- IT'S SIX MONTHS
OR LONGER.
PROBABLY HAD TO DO WITH USING
THAT AND THE FACT IT DIDN'T
IMPACT BARTEL PROBABLY DIDN'T
CHANGE IT PEOPLE'S PERCEPTIONS
OF THEIR INDEPENDENCE OR DIDN'T
JUMP THEM A CATEGORY BECAUSE
THEY'RE -- MICHELLE.
>> WOULD YOU THEN RECOMMEND BY
MANUAL --
>> NOT OVER.
PEOPLE USE THE TERM PACKAGE.
I DON'T USE IT BECAUSE IT SOUNDS
LIKE COOKBOOK.
THE WAY WE DO A STUDY I WOULD
NEVER SAY JUST TREAT THE LESION
ARM AND NEVER SAY DON'T DO ADLs.
WE JUST WANTED TO FIND OUT WHAT
WOULD HAPPEN.
I THINK IN ACTUAL PRACTICE THAT
THIS INDICATES IT'S A GOOD IDEA
TO TEST THE IPSILESIONAL ARM
ESPECIAL WITH PEOPLE WITH
DEFICITS.
IF YOU CAN USE YOUR CON
CONTRALESIONAL ARM USE USE THAT
WITH THE TRANSFER PACKAGE.
THE REASON I WOULDN'T SAY JUST
DO BILATERAL BECAUSE LOGICALLY
AND BECAUSE OF RESEARCH
PUBLISHED WE KNOW WHEN YOU DO
BILATERAL TASKS WITH BOTH ARMS
THE GOOD ARM IS NOT CHALLENGED
IN THE SYMMETRIC MOVE.
YOU HAVE TO DO BOTH UNILATERAL
TRAINING INDEPENDENTLY TO SOME
DEGREE AND THEN REAL
BILATERAL -- YOU COULD DO
BILATERAL ADL TRAINING AND ALL
THAT WITHIN A SESSION.
I DON'T THINK WE'RE TALKING
ABOUT GROSSLY CHANGING THE TIME
THAT YOU A LOT TO
REHABILITATION.
IT'S JUST THAT I THINK YOU NEED
TO DO -- A LOT OF THE STUFF WE
DID PEOPLE HAVE TOLD US THEY ARE
WERE PRACTICING AT HOME.
WHEN IT'S THE IPSILESIONAL ARM
IT'S LESS FRUSTRATING THAN DO
SOMETHING TO TAKE HOME AND
INCORPORATE THAT.
>>
>> WHAT IS THE ROLE OF THE
COMPLEXITY OF THE ACTIVITIES OF
DAILY LIVING YOU'RE DOING WHERE
THEY VARIED OR IN TERMS OF
COGNITIVE INTENSITY WHERE ALL
YOUR PATIENTS -- THAT YOU
WHETHER OR NOT SCREENED.
THEY JUST HAD TO FOLLOW
INSTRUCTIONS AND WERE TAKING
PATIENTS WITH SEVERE PARESIS
AND IT WAS CHALLENGING.
THEY DIDN'T INVOLVE MULTIPLE
POINTS IN A SEQUENCE.
IT DIDN'T INVOLVE THAT.
THEY WERE PROBABLY COGNITIVELY
PRETTY EASY.
PUT CLOTHES PINS ON A RULER OR
STACK SOME THINGS OR THROW OR
CATCH A BALL.
>> YOU HAD 150?
>> NO.
THE FIRST PART WAS 120 ASSESSING
THE FUSION THE IPSILESIONAL ARM
AND IN THIS WE WANTED 120 AND
THEN COVID HIT.
AND WE ENDED UP -- AND WE THINK
WE CAN STILL HAVE POWER AND WE
ENDED UP GETTING HALF THE
PATIENTS.
>> I DON'T KNOW IF YOU'RE ABLE
TO ANSWER THE QUESTION BECAUSE
YOU'RE FIRST STUDY SHOWS WHEN
THE LESION WAS IN A CERTAIN SIDE
THAT IMPACTED THE EFFICIENT SIDE
VERSUS THE ROBUST SIDE.
WERE YOU ABLE TO SEPARATE YOUR
60 PATIENTS?
>> OUR PATIENTS HAD MIDDLE
CEREBRAL ARTERY INFARCTION AND
LESIONS AND WE WERE ABLE TO
SEPARATE THEM BY LEFT OR RIGHT
HEMISPHERE BUT THEIR RESPONSE TO
THERAPY DIDN'T RESPOND ON
HEMISPHERE.
OUR VIRTUAL REALITY TRAINING WE
DID WITH RIGHT HEMISPHERE
PATIENTS WE DID A TRACING TEST
WHERE THOUGHT IT INVOLVED A LOT
OF SPATIAL CORRECTIONS AND
PROBABLY TAXES THE RIGHT
HEMISPHERE BASED ON OUR MODEL
MORE.
YOU DON'T HAVE TO DO -- YOU HAVE
TO DO PREDICTION AND CORRECTION
AND GETTING BACK TO A POINT IN
SPACE AND THEN WE DID A VIRTUAL
SHUFFLEBOARD TEST OR THINK OF IT
AS AIR HOCKEY TEST FOR LEFT
HEMISPHERIC PATIENTS WHERE THEY
DO BALLASTIC MOVEMENTS AND TRY
TO GET MORE ACCURATE.
-- BALLISTIC MOVEMENT.
AS WE FIGURE OUT OUR ANALYSIS
THE LOOKS LIKE THAT COMPONENT
AND THE KINEMATICS AND HOW THEY
CORRELATE TO THE TREATMENT AND
IT LOOKS LIKE IT WORKED WELL AND
THE COMPONENT WORKED WITH RIGHT
HEMISPHERIC PATIENTS BUT NOT AS
WELL WITH LEFT THOUGH BOTH GOT
JUST AS MUCH BETTER FOR WHATEVER
THAT'S WORK.
>> THANK YOU FOR TAKING US
THROUGH THE NEURAL AFLAT --
AFLA
FLAT NAT MY -- ANATOMY AND
DIDN'T GET INTO THE CEREBELLUM
AND DO YOU DRAW NEURAL
PLASTICITY OR DO YOU THINK
YOU'RE REPURPOSING LIGHTENED
PATHWAYS A LA JOHN KRAKOW.
>> I'M SURE THE CEREBELLUM IS
BEING USED ESPECIALLY FOR THE
PREDICTIVE CONTROL WE HAVE A
MODEL OF THE PREDICTIVE IDEA AND
USED FOR DIFFERENT TYPE OF
LEARNING WE'RE TESTING THAT NOW.
THE CEREBELLUM IS FEEDING ERRORS
AND THE PARIETAL CORTEX IS
CORRECTING THE MODEL OF CONTROL.
THE NEUROPLASTICITY AND ANY
BEHAVIORAL PLASTICITY IS
ASSOCIATED WITH SOME PLASTICITY
BECAUSE EVERYTHING WE DO IS THE
BRAIN.
I'M SURE IT'S ASSOCIATED WITH
DIFFERENCES IN SYNAPTIC
EFFICIENCY AND RECRUITING SMALL
CHANGES AND SYNAPSES BUT I DOUBT
YOU'LL SEE ANYTHING GROSS IN THE
CHRONIC PATIENTS OVER THE SIX
MONTHS.
>> DO YOU SPECT TO SEE SOMETHING
IN THE LOWER?
>> THAT'S TOUGH.
WE HAVE LATERALIZATION BUT MOST
STUDY THAT HAVE SHOWN
LATERALIZATION HAVE ASKS THE
LEGS TO DO ARM TESTS.
LIKE WRITING IN THE SAND.
IT'S KIND OF UNFAIR.
WE TALKED ABOUT LOOKING AT
IMPEDENCE VERSUS PREDICTIVE
CONTROL IN A SORT OF STANCE TASK
WITH A UNILEG SUBSTANTIATE
WIGGLING AROUND THINKING THAT'S
A WAY TO DIFFERENTIATE IT AND
THE LITERATURE IS VERY CONFUSING
WITH REGARD TO LEG OR TRUNK
LATERALIZATION.
ALSO THE TYPES OF TESTS WE DO
ARE HANDLED -- YOU LOOK AT THE
CORTICAL AREAS AND HANDLED LESS
BY THE LEGS BY THE CORE TEXT
THAN THE HANDS.
I DON'T KNOW AND I DON'T KNOW IF
LATERALIZATION IS PURELY A
FUNCTION OF CORTEX.
>> ARE YOU USING THIS TO MAP
THIS.
>> TURNS OUT WE DON'T USE THE
CEREBELLUM.
THEY'RE LIKE THE APPENDIX.
NO, WE HAVEN'T DONE ANYTHING
LIKE THAT.
ALSO THE CEREBELLUM IS
STRUCTURALLY LATERALIZED.
>> WHICH DID YOU USE THE RIGHT
OR LEFT ARM?
>> I GUESS THIS SO MUCH.
>> I WANTED TO FOLLOW UP BECAUSE
YOU KIND OF MENTIONED THE CMI
AND I REMEMBER THE EARLY
CONSTRAINT IN MOVEMENT THERAPY
ESPECIALLY DR. DOBBS WORK SHOWED
WHEN YOU TRAIN IN THE FMRI WORK
THE PLASTICITY TOOK OVER.
>> THAT'S INTERESTING AND MY
FRIEND IS INTERESTED IN GOING
FROM CONTROL TO NON-LESION SIDE
AND EYE MOILT OF SYNERGY WHICH
SEEMS TO INDICATE THE
CONTRALESIONAL CORTEX HAS
ACTIVATION AND RESULTS IN THE
-SPECIFIC SYNERGY.
HE'S VERY INTERESTED IN COMING
UP WITH TESTS THAT INHIBIT
RECRUITING THE CONTRALATERAL
CORTEX.
WE LOOKED RAT AN APPROACH TO
INHIBIT SYNERGIES AND
CONTRALATERAL SIZE AND ALSO TO
SOME DEGREE WE KNOW ANYBODY THAT
WORKS WITH BRAIN LESIONS KNOWS
THE BRAIN IS A ZERO SUM GAME.
WHEN YOU TAKE A BUNCH OF NEURONS
IT TAKES AWAY FROM WHAT ELSE
THEY ARE COULD BE DOING.
IT'S HARD FOR ME TO IMAGINE WHEN
THAT HAPPENS AND THIS MAY BE
PART OF WHAT YOU'RE ASKING
STEALS THE IPSILESIONAL CORTEX.
SORRY, CONTRALESIONAL CORTEX.
IT'S POSSIBLE THAT HAPPENS SO
IT'S POSSIBLE WE COULD GET
BETTER RESULTS IF WE COMBINE
GEORGE DEWALT'S THERAPY LOADING
THE ABDUCTORS TO RECRUIT
CONTRALATERAL RETICULAR SYSTEMS
AND YOU CAN IMAGINE TRAINING THE
GOOD ARM AS THE SAME TIME AS THE
BAD ARM.
SORRY TO MAKE IT SO RIDICULOUS
AS GOOD AND BAD.
>> DID YOU TEST LOOKING AT THE
JEPSON TAYLOR INCLUDING THE
STUDY AND WHY DID THE FIRST
STUDY SHOW BETTER RESULTS?
I THINK EVERYBODY WHO'S DONE
STUDIES RECRUITING A SPECIFIC
POPULATION KNOWS THAT THE FIRST
10, 15 PARTICIPANTS ARE THE LOW
HANGING FRUIT.
THE PEOPLE THAT ARE MOTIVATED
AND EASY TO GET.
THE FIRST STUDY WAS COMPRISED
ONLY OF THOSE.
IN BOTH CASES THE CONTRALATERAL
ARM WORKS OR GOT BETTER.
>> I WAS THINKING ABOUT TESTED
ON KIDS BECAUSE THAT'S ONE WAY
TO PIVOT -- KIDS WITH
HEMISPHERICECTOMIES.
>> THIS IS SAD.
I WAS WRITTEN 15 OR 20 YEARS AGO
AND SAID I HAVE THESE KIDS AND
WHY DON'T YOU TEST THEM?
I'M LIKE I'M REALLY BUSY.
I'M DOING SOMETHING AND WE NEVER
DID.
NO, IT WOULD BE REALLY
INTERESTING TO DO THAT.
AS AN O.T. I WAS DEALING WITH
KIDS WITH C.P. AND I THOUGHT I
COULD STUDY WHERE THEY ARE MOVE
THE WAY THEY ARE DO AND THE
REASON I WENT TO ADULT STROKE IS
I KNEW THE BRIN DEVELOPED IN A
PRACTICAL WAY THAT WOULD BE
INTERESTING.
I WAS THINKING THE SAME THING.
THEIR BRAIN IS STILL DEVELOPING
BUT CAN MOVE BOTH ARMS AND LEGS.
>> SOME OF THEM.
I WORKED WITH A YOUNG GIRL SHE
WAS HEMI PARATIC AND LAD PERFECT
LANGUAGE AND PERFECT MATH
SKILLS.
IT IS INTERESTING THE WAY THE
BRAIN UNDER ENVIRONMENTAL
CONDITIONS WITH A LESION.
>> I AGREE.
I DON'T KNOW HOW YOU WOULD SEE
STRUCTURAL CHANGES AS SOON AS
YOU WERE SHOWING CHANGE.
>> THE TINY CHANGES
STRUCTURALLY?
NO.
>> IT'S PLAUSIBLE THERE'S
INCREASE IN TISSUE HELP AND A
CHANGE IN NEURONS IS HIGHLY
UNLIKELY.
>> SO THAT'S FUNCTIONAL.
I DON'T THINK YOU SEE CHANGES IN
FMRI.
IN HIS CASE HE'S TAKING A SYSTEM
THAT HAS A PRETTY SEVERE
IMPAIRMENT AND THEN TRAINING IT
LOOKING AT THE NON-DAMAGED
CORTEX AND WE MIGHT AS WELL SEE
IF TRAINING OF UNIMPAIRED
INDIVIDUALS CHANGING WITH THE
SAME THING.
I KIND OF DOUBT IT WOULD BE
OBSERVABLE ON THE RESOLUTION.
AND ONE OTHER THING IS WHEN
PEOPLE HAVE PERIPHERAL DAMAGE
SAY YOU HAVE PERIPHERAL NERVE
DAMAGE TO YOUR DOMINANT ARM ARE
AND/OR YOU LOSE AND HAVE AN
AMPUTATION OF YOUR DOMINANT ARM
PEOPLE DON'T AUTOMATICALLY
RETRAIN THEIR NON-DOMINANT ARM
TO BECOME DOMINANT.
FIVE YEARS LATER IT'S STILL
FUNCTIONING AS A NON-DOMINANT
ARM.
THE IDEA JUST RELEVANT TO THE
STROKE CASE BECAUSE EVEN THOUGH
YOU'RE USING THAT ARM EVERY DAY
YOU'RE NOT CHALLENGING IT.
IT DOESN'T UNDER GO THIS CHANGE
AND COORDINATION EFFICIENCY.
>> ONE LAST QUESTION TIFFANY AND
THEN WE'LL MOVE ON.
>> AS SOMEONE WITH PERMANENT
NERVE DAMAGE IN MY FORMALLY
DOMINANT ARM I GUESS I'M
WONDERING IF AGE HAS ANYTHING TO
DO WITH IT AND IF THERE'S
PLASTICITY THERE BECAUSE I'LL
HEAR FROM PEOPLE WHO HAVE MY
INJURY AND BE LIKE OH, I LEARNED
HOW TO REWRITE OR TYPE WITH ONE
HAND AND I'M LIKE THAT HAPPENED
WHEN YOU WERE YOUNG SO I DON'T
KNOW IF YOU WERE --
>> OF ADULTS THAT LOST A
DOMINANT ARM THE NON-DOMINANT
ARM IS SUPER RESISTANT TO
BECOMING A DOMINANT ARM.
AND I DON'T KNOW HOW MUCH OF
THAT IS COGNITIVE RESISTANCE TO
RETRAINING IT.
I DON'T THINK MUCH OF IT IS BUT
ONCE IT'S STRUCTURED IT SEEMS
HARD TO CHANGE BUT I AGREE IN
DEVELOPMENT THERE'S ALL THIS
CAPACITY FOR CHANGE.
I ALSO THINK THERE'S VERY STRONG
EVIDENCE DOMINANCE HAS A GENETIC
COMPONENT TO IT.
THEY HAVE TO INTERFACE WITH
DEVELOPMENT AND IF YOU END UP
LOSING FUNCTION OF YOUR-TO-BE
DOMINANT ARM THE GENETICS COULD
MARRY WITH THAT ENVIRONMENTAL
INFLUENCE AND SWITCH.
IT'S JUST A THOUGHT.
>> THANK YOU.
THAT WAS A VERY ENGAGING
DISCUSSION.
WE APPRECIATE THE PRESENTATION.
WE HAVE TWO LAST ORDERS OF
BUSINESS.
WE'RE LOOKING FOR NOMINATIONS TO
SUCCEED BARBARA SO KEEP THAT
MIND AS THE LAST THING WE DO AND
AFTER WE TAKE NOMINATIONS
TOMORROW YOU CAN SLEEP ON IT AND
WE'LL VOTE SO YOU'LL HAVE ONE
DAY OF ELECTIONEERING.
THE MAIN THING WE WANT TO DO IS
WE HAVE A RESPONSIBLE TO PUT OUT
A PLAN ON REHAB AND SHOW OFF TO
THE BROADER COMMUNITY WHAT'S
HAPPENING IN THE REHAB FIELD.
IT'S A GREAT OPPORTUNITY FOR
WHAT WE'RE TRYING TO DO.
I WANT TO THANK THE BOARD
MEMBERS WHO HAVE BEEN HELPING TO
SERVE ON SUBCOMMITTEES AND
GENERATING A LOT OF THIS WORK
AND THERESA AND BARBARA WILL
GIVE AN UPDATE ON THE ACTIVITIES
AND WHERE WE ARE.
>> THANK YOU.
I'M NOT GOING TO TALK ABOUT THE
CONFERENCE.
AND FOCUS ON THE RESEARCH PLAN
AND BARBARA KINDLY VOLUNTEERED
TO HELP WITH THIS.
WHAT WE ARE DOING IN 2024?
WE'VE BEEN GETTING INTERNAL AND
EXTERNAL FEEDBACK ON OUR CURRENT
RESEARCH PLAN.
REMEMBER WE HAD ONE IN 2016 AND
ONE IN 2021 AND NOW WE'RE SOME
TIME IN ', 25, MAYBE '26 THE
NEXT ONE WILL COME OUT AND
REVIEWING PROGRESS ON THE THEMES
AND COMING UP WITH NEW POTENTIAL
THEMES.
THE PLAN IS TO REFINE THOSE OVER
THE NEXT FEW MONTHS AND THEN GET
THE APPROVALS THAT WE NEED.
LAST TIME IT TOOK IT 10, 11
MONTHS TO GET I FINALLY APPROVED
AFTER I THOUGHT IT WAS DONE SO
WE HAVE PLENTY OF TIME TO BE ON
SCHEDULE.
MORE SPECIFICALLY WE STARTED IN
FEBRUARY WITH A REQUEST FOR
INFORMATION THAT WE PUBLISHED
SEEKING INPUT FROM THE
COMMUNITY.
THIS WAS KIND OF OUR ROUND 1.
WE BROAD THOSE RESPONSES TO YOU
IN PLAY TO DISCUSS.
IF YOU REMEMBER WE HAD A COUPLE
DOZEN RESPONSES AND EVERYTHING
WAS POSITIVE ABOUT THE PLAN AND
NEW POTENTIAL THEMES WERE
PROPOSED.
DURING THE SUMMER I HAD THE
PLEASURE OF WORKING WITH STAFF
AT NIH TO TAKE ALL THAT FEEDBACK
AND START PUTTING TOGETHER
THEMES.
AND THEN WE STARTED TO SOCIALIZE
THOSE PUBLICLY.
FIRST WE TALKED TO THE WORKING
GROUP THEN I'VE BEEN TO GRAND
ROUNDS.
WE DID A SPECIAL SESSION AT ACRM
AND NOW WE HAVE TODAY'S MEETING.
THIS IS NOT THE END OF OUR
FEEDBACK.
WE'LL BE SEEING MORE
OPPORTUNITIES.
SO WHAT ARE THE DRAFT THEMES?
LET'S GET TO THE MEAT OF IT A
LITTLE BIT.
AND IT'S NOT AVOIDED MY
ATTENTION YOU HEARD ABOUT THE
NICHD STRATEGIC PLAN THIS
MORNING AS WELL AS DISABILITY
RESEARCH STRATEGIC PLAN AND NOW
BRINGING A THIRD PLAN.
THIS ONE WE'RE CALLING A
RESEARCH PLAN.
THEY'RE COMPLIMENTARY AND
DISTINCTIVE BUT ALL RELATES.
SO NIH CAME UP WITH A FEW
GUIDING PRINCIPLES WE THINK
THESE THEMES ARE AREAS OF GROWTH
IN THE NEXT FIVE YEARS.
WE REALIZE THEY ARE NOTE
INCLUSIVE OF ALL REHABILITATION
RESEARCH WE HAVE THE IT FIVE
PROPOSED THEMES ON THE RIGHT AND
I'LL GO INTO EACH OF THEM IN
MORE DETAIL.
THE FIRST IS THE NEED FOR BASIC
AND MECHANISTIC STUDIES.
THIS IS THE FOUNDATIONAL
KNOWLEDGE WE NEED TO UNDERSTAND
THE COMPLEX RECOVERY FROM
DISEASE AND SEE THIS BEING
MULTI-LEVEL.
WE ALSO SEE THIS RAZZ -- ALSO
SEE THIS AS PRECISION
REHABILITATION.
WE WOULD INCLUDE THINGS LIKE
BIOMARKERS FOR INJURY, ILLNESS
AND DISORDERS AS WELL AS FOR
PRESCRIBING INTERVENTIONS.
AND THEN OF COURSE THE TIMING
AND THE TYPE OF MECHANISM -- I'M
USING THE TERM MECHANISM
PHYSIOLOGICAL AND BEHAVIORAL.
WE TALKED ABOUT THE BEHAVIORAL
ASPECTS.
SO BOTH OF THOSE ARE INCLUDED
HERE.
OUR TEXT -- TEXT TOPIC IS
SOCIAL DETERMINATES OF HEALTH.
WE HAVE PEOPLE WITH DISABILITIES
AS A POPULATION EXPERIENCING
LEATH DISPARITIES.
WE HAVE -- HEALTH DISPARITIES.
WE HAVE ABLISM AND TALKED ABOUT
INTERSECTIONALITY AND WE'LL HAVE
A LAYERING OF OTHER MINORITIZED
IDENTITIES THAT CAN ALSO BE
CONTRIBUTING TO HEALTH OUTCOMES
AND THAT COULD BE RACE,
ETHNICITY AND RURAL, ETCETERA.
MAKING SURE WE ARE TAKING A
WHOLE PERSON APPROACH AND
STUDYING ASPECTS.
WE MENTIONED THE AHRQ REPORT AND
NEED MORE RESEARCH ON THE
BARRIERS AND FACILITATORS THAT
CONTRIBUTE TO HOW PEOPLE GET
REHAB CARE AND PREVENTIVE HEALTH
SERVICES FOR PEOPLE WITH
DISABILITIES.
THAT'S NOT PREVENTION OF
DISABILITIES, THAT'S PREVENTIVE
CARE FOR PEOPLE WITH
DISABILITIES.
AND FEEDBACK ON WHERE IT WAS
IMPORTANT WHERE THE CARE WAS
DELIVERED.
WE HEARD SOME OF THAT TODAY
RURAL VERSUS URBAN AREA AND
INPATIENT, OUT PATIENT COMMUNITY
NURSING HOMES, ETCETERA
INCLUDING FOREIGN AND DOMESTIC.
THAT'S WHAT WE HAVE UNDER SOCIAL
DETERMINATES OF HEALTH.
WE HIGHLIGHTED REHABILITATIVE
AND ASSISTIVE TECHNOLOGIES.
AGAIN, THERE'S TWO AREAS THAT WE
WANT TO HIGHLIGHT SO THE FIRST
IS THE ROLE THAT NIH PLAYS IN
SUPPORT OF EARLY STAGE
DEVELOPMENT AND THE FLIP SIDE IS
NOW THAT WE'VE DEVELOPED THESE
NEW TECHNOLOGIES HOW DO WE MAKE
SURE THEY ARE GET IMPLEMENTED OR
DISSEMINATED OR COMMERCIALIZED.
WE LEANED INTO THE SMALL
BUSINESS PROGRAM AND THE
COMMERCIALIZATION SO THOSE TWO
ENDS OF THAT TRANSLATIONAL
SPECTRUM.
THEN WE ALSO INCLUDED UNDER HERE
THINGS LIKE TELEHEALTH, REMOTE
ASSESSMENT AND DELIVERY OF CARE
AND ADHERENCE WHICH ARE OTHER
TOPICS THAT HAVE COME UP TODAY.
NEXT IS IMPLEMENTATION RESEARCH
THIS IS NEW TO THE CENTER.
WE FELT IT WAS IMPORTANT TO TALK
ABOUT THE PERSPECTIVES OF THE
CONSUMERS TO MAKE SURE WE HAVE
DESIRED, ACCEPTABLE, EFFICIENT
AND I'M SURE YOU CAN GIVE OTHER
ADJECTIVES TO USE.
WE SAW THE NEED FOR MORE
PRAGMATIC STUDIES.
SO ARE WE ABLE TO REPRODUCE
EFFICIENT EFFICACY STUDY IN THE
REAL WORLD?
AND HOW CAN WE HELP OUR
RESEARCHERS THINK ABOUT HOW
THEIR THERAPIES WILL BE ADOPTED
AND SUSTAINABLE AND PLAN FOR
THAT AND INCORPORATE THAT AND
NOT SOMETHING WE THINK OF AT THE
END.
THIS MIGHT BE CONTROVERSIAL BUT
SHOULD WE BE ENGAGING IN MEDICAL
EDUCATION AND PROFESSIONAL
SOCIETIES WE HEARD IT TAKES
FOREVER TO TRANSLATE AND IS
THERE A ROLE FOR NIH RESEARCH TO
HELP IN THAT TRANSLATION OF
FINDINGS INTO PRACTICE.
AND THE IMPORTANCE OF A
WORKFORCE AND SUPPORTING
TRAINING AND CAREER DEVELOPMENT
AND INFRASTRUCTURE IT'S BEEN
ESSENTIAL TO NCRR'S TRAINING AD
CALLED OUT A.I. AS AN AREA WE
THINK IS IMPORTANT BUT THERE MAY
BE OTHER POINTS.
>> SO WE MET EARLIER THIS
SUMMER, I GUESS.
WE WERE SUPPORTIVE OF THE
MECHANISTIC STUDIES AND BE
PROACTIVE ABOUT ADDING IMAGING
BIOMARKERS IN ADDITION TO THE
OTHERS.
THE THOUGHT WAS WE ARE LOOKING
AT PRE DUDICTIVE REHABILITATION.
IN TERMS OF THE SECOND THEME THE
SOCIAL DETERMINATES OF HEALTH
AND CONSIDER A COMPREHENSIVE
APPROACH THAT INCLUDES LANGUAGE
BARRIERS AND LITERACY AND RURAL
COMMUNITIES AND NUTRITION ACCESS
AND SO FORTH.
IN THE ASSISTIVE TECHNOLOGY AND
REHABILITATIVE TECHNOLOGIES
AGAIN SUPPORTIVE WITH CAVEATS.
WHY ARE DEVICES AND NOT OTHER --
WHY ONLY DEVICES AND NOT OTHER
MODALITIES.
CONSIDERING OTHER REHAB
INTERVENTIONS LIKE DRUGS,
BIOLOGICS, BEHAVIORAL CHANGE
THERAPIES AS WELL.
AND IMPLEMENTATION AGAIN SUPPORT
OF THIS GROUP CONSIDERING ADDING
GENERALIZABILITY, ACCESS AND
DOSING COLLABORATION WITH THE
FDA AND CMS.
IN TERMS OF TRAINING AND CAREER
DEVELOPMENT, SUPPORTIVE CONSIDER
ADDING OPPORTUNITIES FOR TEAM
SCIENCE EMPHASIZING DATA SHARING
AND INNOVATION AND OTHER
SUGGESTIONS OR TO SOCIALIZE THIS
BROADLY AND NOT JUST AT REHAB
MEETINGS.
>> STEVE, WOULD YOU SAY THAT
ACCURATELY REFLECTS THE MEETING
AND I DON'T KNOW IF OTHER STEVE
HAS REJOINED.
HE HAD TO STEP OFF.
>> WELCOME TO THE 20th CENTURY.
>> 21st?
[LAUGHTER]
>> OKAY.
I HAD AN OPPORTUNITY TO GIVE
GRAND ROUNDS AT THE LAB.
THE ATTENDEES WERE LARGELY
SUPPORTIVE OF THE THEMES.
I WOULD SAY THERE WAS A SPIRITED
DISCUSSION OF THE ROLE THAT NIH
SHOULD TAKE IN TECHNOLOGY
DEVELOPMENT ON BOTH SIDES SO
THAT FEEDBACK HAS BEEN HEARD.
AND NEXT SLIDE -- WE HAVE A VERY
IMPORTANT ROLE WE SHOULD GET OUT
OF THE JOB.
BOTH OF THOSE OPINIONS CAME
THROUGH.
AS FAR AS WE HAVE A SMALL
BUSINESS PROGRAM I SUSPECT WE'LL
CONTINUE TO DEVELOP TECHNOLOGY.
IT WAS AN INTERESTING
PERSPECTIVE.
THEN WE HAD SPECIAL SESSION AT
THE CONGRESS OF REHAB MEDICINE
WE TRIED TO QUANTITATE SOME OF
THIS.
THE AUDIENCE WAS MOSTLY EARLY TO
MID CAREER RESEARCHERS AND ABOUT
HALF HAD NOT YET APPLIED TO NIH.
SO I THINK THAT'S IMPORTANT TO
KEEP IN MIND WHO THE AUDIENCE
WAS.
AND ABOUT A THIRD HAD REFERENCED
THE PLAN WHEN APPLYING TO NIH.
AND KIND TECHNOLOGY, TRAINING
AND INFRASTRUCTURE AND
TRANSLATIONAL RESEARCH WHICH IS
BASICALLY WHAT WE WERE CALLING
MECHANISTIC RESEARCH IN THE
PREVIOUS PLAN.
AND LOOK AT THE SOCIAL
DETERMINATES OF HEALTH AND
IMPLEMENTATION PLAN.
WE ASKED WHAT WAS MISSING.
WE GOT MOSTLY ONE-OFFS OF WHAT
THEY'RE PERSONALLY DOING.
AND WE HAVE HEALTH SYSTEMS
COMING THROUGH WHICH I THINK
COULD BE INCORPORATED UNDER
IMPLEMENTATION RESEARCH.
>> I WOULDN'T DEFINE THEM BUT
THINGS LIKE HOW DO YOU IMPLEMENT
A NEW PROCEDURE INTO THE WORK
FLOW IN A REHAB HOSPITAL AND HOW
DO YOU EVALUATE IT.
THERE ARE FRAMEWORKS THE
RESEARCH INFRASTRUCTURE MR3 HAS
DONE SOME WEBINARS.
NEXT WE'RE OPEN FOR DISCUSSION.
DO YOU HAVE OTHER THINGS WE NEED
TO BE THINKING ABOUT AND IT'S
ONLY SUCCESSFUL IF YOU HAVE
BUY-IN, IF THE COMMUNITY HAS
BUY-IN.
ARE THERE SPOTS MISSING OR
THINGS YOU'D LIKE US TO CONSIDER
BEFORE WE MOVE TO THE NEXT
STAGE?
>> IF I CAN -- IT'S MY OWN
OPINION I THINK A RESEARCH PLAN
SHOULD BE INSPIRATIONAL TO OUR
FIELD AND GET NEURONS TO LIGHT
UP AND SHOULD SHOW THE FIELD OUR
LARGER CONSTITUENCY WE
UNDERSTAND THE NEEDS AND
OPPORTUNITIES AND THINK A PLAN
SHOULD BE ACTIONABLE AND IN
PREVIOUS DISCUSSION WITH THE
BOARD WE'VE TAKEN THE PREVIOUS
PLAN AND SHOWN HOW WE MADE
PROGRESS ON THE PREVIOUS PLAN.
AND GIVEN THE CASE WE HAVE SOME
AND IN OTHERS WE HAVE TO CO
PROGRAMMING AND THAT'S WHERE OUR
JOB GETS INTERESTING.
LET'S OPEN UP THE DISCUSSION WHO
WILL START?
>> YOU THINK THESE ARE IMPORTANT
THEMES AND AGREE WITH THE CAVEAT
IN TERMS OF INCLUDING THE
PIECES.
I WOULD DEFINITELY NOT REMOVE
TECHNOLOGY FROM THE EQUATION.
I DEFINITELY THINK THAT THERE'S
AN ASSUMPTION THAT THERE'S
SUFFICIENT SUPPORTED TECHNOLOGY
OUT THERE BUT I THINK IT
HASN'T -- JUST LIKE WITH REHAB
ROBOTICS THE BPENETRATION IS NO
THERE.
PART OF WHAT I SUGGEST IS
FALLING UNDER THE IMPLEMENTATION
RESEARCH SECTION OR MAYBE
THERE'S OVERLAP BETWEEN THEME
THREE AND FOUR IS NOT JUST ABOUT
THE DEVELOPMENT OF IT BUT IT'S
BEING ABLE TO MAKE SURE IT'S
BEING USED AND ALSO THE
TRANSLATION OF IT INTO THE HANDS
OF INDIVIDUALS.
I WOULD ALSO I DON'T KNOW YOU
DID IT, IT DIDN'T EXPLICITLY SAY
DIGITAL HEALTH OR DIGITAL
TECHNOLOGY BUT USE A MOBILE
HEALTH, MOBILE TYPE OF
TECHNOLOGY IT WASN'T CLEAR WHERE
THAT SITS BUT I WOULD PUT IT
UNDER REHAB AND ASSISTIVE
TECHNOLOGY BECAUSE THE MOBILE
HEALTH IS A GAME CHANGER FOR
MANY COMMUNITIES.
SO THOSE ARE THE COUPLE OF
THINGS THAT I WOULD ADD.
>> BOB AND FRANCISCO ON ZOOM.
WE'LL GO TO CARL AND THEN
FRANCISCO.
WE'LL GET THE NEW GUY IN THERE.
6:
>> I THINK IT'S A GREAT TEST.
IT'S GOING TO BE GREAT IN THE
FUTURE WHEN NINDS AND NICHD
DON'T KNOW HOW TO PARS MEDICAL
DRUG, CELLULAR THERAPIES.
THE OVERLAP IS SPECTACULARLY
PERMISSIBLE.
THE ONE THING I MIGHT ADD, THIS
IS DECIDEDLY STROKE CENTRIC AND
MAY NOT PERTAIN TO MUCH OF THE
BUSINESS YOU DO BUT THAT'S THE
COLOR OF GLASSES I SEE THE WORLD
THROUGH BUT THERE IS A
PROGRESSION--SOMEBODY COMES IN
WITH A STROKE OR TBI OR SEI OR
SOMETIMES AN MS FLARE OR DIM EN
IS THAT -- DEMENTIA AND THE
HANDOFFS ARE MISERABLE AND
NOBODY SPEAKS THE SAME LANGUAGE
AND IN THE FUTURE WHEN WE THINK
OF GIVING STEM CELLS OR DAY
THREE OR STEROID YAHOO OR
WHATEVER THE PEOPLE WILL PAY THE
PRICE ARE THE OTHER PARTIES.
WE NEED INTEGRATION AND
COMMUNICATION.
WHEN TPA BECAME APPROVED STROKE
CENTERS WERE GALVANIZED AND NOW
A POWERFUL FORCE FOR RESEARCH
AND RESEARCH DONE.
IRS IN THIS COUNTRY THIS IS
FERTILE TERRITORY AND A RELATED
NOTE IN TERMS OF INTEGRATION AND
HANDOFFS AND I WOULD LOVE A
REHAB DAY FOR TRIALS AND PROMISE
TO LEAD IT THE FIRST 21 DAYS BUT
THOSE ARE TWO RELATED TOPICS
THAT MAY BE MAYOR -- MARROW IN
SCOPE BUT TO SHARE.
>> I THINK THIS IS GREAT TOO.
I WOULD LIKE TO ADVOCATE FOR AN
ADDITION.
FOR NUMBER ONE, THE NEED FOR
BASIC AND MECHANISTIC STUDIES,
FROM MY PERSPECTIVE AT THE MS
SOCIETY IT'S FRUSTRATING TO ME
TO SEE BASIC SCIENCE STUDIES AND
ONE MEASURE OF FUNCTION AND THEY
ARE SAFE THEY NOW UNDERSTAND
FUNCTION.
I WOULD REALLY LIKE TO ADVOCATE
FOR TRULY COLLABORATING WITH
BASIC SCIENTISTS AND REHAB
SCIENTISTS BECAUSE THE TWO
FIELDS ARE VERY DIFFERENT EVEN
THE WAY YOU DESIGN STUDIES IS
VERY DIFFERENT AND THEY ARE NEED
TO LEARN FROM ONE ANOTHER IF
WE'RE EVER GOING TO GET AWAY
FROM MOUSE STUDIES TO PEOPLE
DOING THINGS.
>> I THINK IT'S GREAT.
I THINK THE ISSUE OF DEVICES AND
TECHNOLOGY HAS A SEPARATE
CATEGORY.
IT SEEMS WEIRD TO ME.
IT SEEMS TO ME THAT FOR EXAMPLE
AT WHAT POINT DO WE CALL
ELECTRIC LIGHTS NOT TECHNOLOGY
ANYMORE?
IT SEEMS THE BASIC MECHANISM
RESEARCH IS WHAT DRIVES WHAT YOU
DO FOR INTERVENTION AND
TECHNOLOGY SHOULD BE PART OF --
I DON'T KNOW WHO MENTIONED --
THE BEHAVIORAL INTERVENTION
STATEMENT BUT I MEAN WHAT --
WHAT ARE DEVICES IF THEY'RE NOT'
MEANS FOR IMPLEMENTING
BEHAVIORAL INTERVENTION.
I JUST WANT TO POINT OUT THAT IT
SEEMS LIKE THAT SHOULD BE
INTEGRATED THROUGHOUT AND NOT A
SEPARATE CATEGORY.
>> APOLOGIES I KNOW I'M NEW SO
IF THIS WAS DISCUSSED JUST TELL
ME AND RAISES MORE PHILOSOPHICAL
TECHNOLOGY BUT I'M AN ATTORNEY
SO WORDS MATTER.
AND ON SOCIAL DETERMINATES OF
HEALTH HAVE YOU GIVEN
CONSIDERATION TO WHERE THEY'LL
END AND WE STARTED USING AND
STILL KEEPS THE SAME ACRONYM THE
SOCIAL DRIVERS OF HEALTH AND
IT'S SOMETHING I THINK THAT
MAKES A DIFFERENCE AND WHERE
YOU'RE HEADED AND INTERVENTION.
>> THEY'RE STARTING TO USE OTHER
WORDS AND THE OTHER WORD ESCAPES
ME BUT WHAT PARTICULAR PHRASE
THEY'RE USING BUT WE'LL BE
HARMONIZED.
>> FRANCISCO IS UNMUTED AND
READY.
>> ONE COMMENT IN RESPONSE.
THE REASON WHY WE HAVE SEVERAL
DRIVERS OF LEATH IT'S PUBLIC
HEALTH FOCUSSED AND PUBLIC LEATH
IS USING THE TECHNOLOGY.
THERE'S SOMETHING THERE THE
FIELD THAT DOES SUGGEST IT'S A
TERM THAT CAN BE USED.
>> ONE OF THE MAXIMS IN DESIGN
ENGINEERING AND SYSTEMS
ENGINEERING IS THAT YOU START
WITH THE PROBLEM FIRST.
IF WE HAVE AN ASSISTIVE
TECHNOLOGY AS A GENERAL
ACTIVITY, WE ENGINEERS CAN'T
HELP OURSELVES AND DO WHAT WE
LIKE TO DO.
WE LOVE THAT.
BUT THIS IS ONE OF THE WAYS IN
WHICH TRANSLATION TO THE MARKET
IN ANY TYPE OF MARKET BE IT
COMMERCIAL, CONSUMER, THAT'S
WHEN A VERY GOOD IDEA CANNOT
FIND THE MARKET OR FINDS A
MARKET BUT IS TO EXPENSIVE TO
REDESIGN IT AND RETOOL IT FOR A
PARTICULAR CLIENT.
THIS IS ESPECIALLY THE CASE WHEN
YOU BUMP AGAINST REGULATORY
ISSUES LATE IN THE DESIGN
PROCESS THAT'S A RECIPE FOR NOT
GOING ANYWHERE AND TIME
CONSUMING AND RETOOLING.
ONE WAY TO PROMOTE ESSENTIALLY
EFFECTIVE TRANSLATION TO
TECHNOLOGIES, DEVICES, THERAPIES
IS TO START WITH A PROBLEM.
I KNOW IT DOESN'T SOUND TOO
ATTRACTIVE BUT IF YOU PRESCRIBE
WE WANT TO SOLVE THIS PROBLEM UP
FRONT THE TECHNOLOGY THAT COMES
FROM THOSE EFFORTS WILL LIKELY
SEE THE LIGHT OF DAY.
BE ADVISED EVERY DESIGN ENGINEER
GIVES TO EVERY YOUNG DESIGN
ENGINEER.
START WITH A PROBLEM FIRST.
>> I THINK YOU'RE RIGHT.
I WANT TO MENTION WE HAVE A FEW
SMALL COURSES SOMETIMES FUNDED
THROUGH THE R25 MECHANISM TO
EXPOSE ENGINEERS TOE THIS -- TO
THE LIVES OF PEOPLE WITH
DISABILITY AND YOU HAVE WELL
MEANING ENGINEERS HAVE SOLUTION
TO REAL LIFE PROBLEMS AND IT'S A
REAL EYE OPENING MOMENT WHERE
THE TWO START WORKING TOGETHER.
WE HAVE TIFFANY AND THEN
MICHELLE AGAIN.
>> THIS IS TIFFANY YU.
I GUESS ONE WAY TO START
THINKING ABOUT PRE PROBLEM IS
ALSO OR REFRAMING IT IS TO THINK
ABOUT WHAT BARRIERS ARE YOU
EXPERIENCING OR WHAT IS
SOMETHING THAT YOU WOULD LIKE TO
DO AGAIN AND THEN USE THAT AS
THE PATHWAY.
I WAS WONDERING IF THIS WAS
EMBEDDED THROUGHOUT BUT I'VE
BEEN THINKING ABOUT THE
HUMANIZATION OF CARE.
AND HOW IT'S IMPLEMENTED.
>> I DON'T KNOW THAT WE'VE USED
THOSE WORDS BUT WE ARE
EMPHASIZING THE COMMUNICATION
WITH THE END USER AND ACROSS THE
WHOLE PROCESS.
SO FROM SELECTING THE PROBLEM TO
THE DESIGN OF THE SOLUTION TO
THE DISSEMINATION.
SO WE'RE THINKING ABOUT IT IN
THAT WAY.
I DON'T KNOW IF THAT IS HOW
YOU'RE USING THE TERM
HUMANIZATION.
>>
>> I THINK ABOUT IT AS A PATIENT
LIKE HOW DISEMPOWERED IT FEELS
BECAUSE THEY'RE USING
TERMINOLOGY I DON'T UNDERSTAND.
IF I THINK WHERE WOULD I LIKE TO
SEE THIS AREA IN THE NEXT FIVE
YEARS, A LOT MORE -- WHAT'S
THAT?
[OFF MIC]
>> CAN YOU FINISH, I'M SORRY.
>> I THINK A LOT OF IS THE CROSS
COLLABORATION LIVED EXPERIENCE
AND BRINGS US MORE TO THE
PROCESS.
AND REALIZING WE'RE NOT JUST THE
BENEFICIARIES AND WE WANT
DIGNITY IN OUR CARE AND HOW IT'S
IMPLEMENTED TOO.
I DON'T KNOW IF IT'S EVEN
RELEVANT BUT SOMETHING I WAS
THINKING ABOUT AS I WAS LOOKING
THROUGH THIS THINKING ABOUT
REHABILITATIVE AND ASSISTIVE
TECHNOLOGY AND SOMETIMES WE
FORGET THERE'S A REAL PERSON
WHO'S LIFE IS CHANGED BY THIS
RESEARCH THAT'S BEING DONE WHEN
IT COMES DOWN TO IT.
>> IT'S DEFINITELY RELEVANT.
DON'T INTERPRET MY WORD FINDING
SLOWNESS.
I'M THINKING ABOUT THE PLAIN
LANGUAGE CONVERSATION WE HAD
EARLIER AND THINKING ABOUT NIGHT
NIDELER AND INVITED THEM TO DO A
PRESENTATION ON THEIR CENTERS
THE LAST MEETING, MEETING
BEFORE.
THERE'S MODELS THAT I CAN SEE US
DOING A BETTER JOB OF
COMMUNICATING THOSE OUTCOMES.
THANK YOU FOR THAT.
>> LET'S GETS ANGEL, PEPE AND
BACK TO MICHELLE FOR MORE
COMMENTS.
>> MY COMMENTS -- THE PLAN IS I
LOVE WHERE IT'S GOING AND ONE
THING I WOULD WANT TO ADD OR
SHARE AND YOU WENT THROUGH IT
QUICKLY ON TRAINING AND MAKING
SURE IT RELATES TO WHAT TIFF
TIFFANY'S SAYING WHEN YOU'RE
WORKING ON TRAINING BUT LOOK AT
PROGRAMS AND INITIATIVES TO
RECRUIT MORE PEOPLE WITH LIVED
EXPERIENCE TO THE FIELD OF
RESEARCH.
I THINK THAT WILL HELP WITH
TIFFANY'S POINT OF UTILIZATION
AND THERE'S I THINK THERE WOULD
BE A LOT THAT CAN BE LEARNED BY
INCLUDING THAT IN THE TRAINING
ASPECT OF THE PLAN.
BETWEEN THE REHAB AND DISABILITY
RESEARCH PLAN SIT NEXT TO EACH
OTHER ON THE SHELF.
MY NAME GOES ON BOTH, NO.
SO SOME OF THESE THINGS ARE MORE
FORWARD IN ONE PLAN HOPEFULLY SO
I DON'T WANT TO WRITE THE SAME
THING TWICE PUT TOTALLY AGREE.
>> WE NEED TO PROMOTE IN
PEDIATRICS BUT IT WASN'T
EMPHASIZED.
I WONDER HOW IMPORTANT IT WOULD
BE IF WE -- AND JUST ANSWERING
THAT ARE ALSO USED FOR DISCOVERY
SO THEY DON'T NEED AN
APPLICATION FOR TREATMENT BUT
TOOLS FOR DISCOVERY.
AND SOMETIMES TALKING BACK TO
FRANCISCO, WE SEE THE TECHNOLOGY
BASED ON THE EXTENT OF
TECHNOLOGY USED FOR DIFFERENT
APPLICATION.
IT'S IMPORTANT TO KEEP THAT.
MY OWN EXPERIENCE FUNDED B
BY NINDS AND THERE'S A GAP
BETWEEN THE AGENCIES.
I GOT THIS GRANT AND FROM NSF I
CANNOT DO TOO MANY BUT THEN I
NEED SOME NUMBER AND SO THERE'S
A BRIDGE TO THE JOB.
AND YOU DON'T KNOW IF PEOPLE
HAVE HAD THE EXPERIENCE.
THE FINAL COMMENT IS RELATED
BACK TO THE HUMANITIES.
YOU HAVE A NICE CONVERSATION
ABOUT THE HUMANITIES AND
REHABILITATION AND I KNOW THERE
ARE SOME PROGRAMS FROM NIH AND
DIFFERENT INSTITUTES AND I'VE
SEEN SOME OF THAT BUT WE'RE NOT
GOING TO BE SILOED IF WE DON'T
TALK HERE RIGHT.
WHAT ARE SYNERGY TO DEVELOP WITH
OUR INSTITUTES AND INITIATIVE.
AND HOPEFULLY SOON THAT'S THE
BEST WAY OF EXERCISING.
YOU GET THE REWARD FROM THE
SOCIAL ASPECT THAT'S VERY
IMPORTANT.
>> I'M NOT TRYING TO BE FUNNY.
TURN -- DIFFERENT PEOPLE HAVE
DIFFERENT STANCE.
>> HAVING THE RIGHT ENVIRONMENT
OR SET UP.
>> WE CAN TALK ABOUT THIS AT THE
DINNER.
I'D LIKE TO SEE MORE INCLUSIVE
COVERAGE OF THE HUMANITIES AND
THE ARTS.
>> SO YOU'LL NOTICE THIS IS NOT
THE NCMRR RESEARCH PLAN.
AS THE NIH RESEARCH PLAN.
WE HAVE TO BE SOMEWHAT AGNOSTIC
ON SOME TOPICS.
I NEED THE AGING INSTITUTE TO BE
ON BOARD WITH IT AS WELL AS THE
CHILD HEALTH INSTITUTE.
SO WE'RE PROBABLY NOT GOING TO
CALL OUT PEDIATRICS BECAUSE I
WANT EVERYONE TO SEE THEMSELVES
THERE.
SO IT'S NOT THAT WE AREN'T
SUPPORTIVE BUT THE PEOPLE DOING
PEDIATRICS WILL HAVE TO SEE
THEMSELVES IN OTHER CATEGORIES
IF THAT MAKES SENSE.
I'M THINKING ABOUT HUMANITIES
AND MAYBE CULTURE AND OTHER
WORDS LIKE THAT THAT CAN BE
INTERPRETED MULTIPLE WAYS.
THAT COULD BE PART OF THE SOCIAL
DRIVERS OF HEALTH.
>> ONE LIFE SPAN APPROACH WAS
HIGHLIGHTED IN A PREVIOUS
VERSION SO LET'S GO WITH
MICHELLE.
>> I THINK SARAH HAND HER HAND
UP TOO.
I WAS GOING TO DO TWO THINGS AND
JOSÉ BEGAN TO ADDRESS WHILE IT'S
TRUE SOME INTERVEN INTERVENTION
DRIVE SOME DEVELOPMENT AND NOT
ALL IN TERMS OF TECHNOLOGY.
THERE ARE THERAPEUTIC TYPE
INSTANCES AND ALSO ASSISTIVE.
THERE'S SIMPLE SYSTEMS AND
SIMPLE MORE ROBOTIC TYPE
SYSTEMS.
I THINK CALLING IT
REHABILITATION ASSISTIVE
TECHNOLOGY IS VERY GENERAL.
IT DIDN'T IMPLY IT'S GOING TO BE
DIGITAL.
IT DOESN'T IMPLY IT HAS TO BE
HIGH TECH OR ROBOTIC.
IT IMPLIES IT'S TECHNOLOGY THE
WAY THE LAW DEFINES ASSISTIVE
TECHNOLOGY IS SERVICE AS WELL AS
DEVICES.
SO I THINK IT'S GOOD THAT WE
PULL THAT OUT.
BUT I DO LIKE THE IDEA AND I
DON'T KNOW IF THIS COULD BE IN
THE DETAILED PART OF IT
STRESSING THE APPROACHES AND
STRESSING THE PARTICIPATORY
DESIGN APPROACH AS AS WELL AS
HUMAN CENTERED DESIGN APPROACH
BECAUSE I DO THINK THAT WHERE
AND WHY ASSISTIVE AND REHAB
TECHNOLOGY FAILS IS BECAUSE
THERE'S NOT ENOUGH OF THAT UP
FRONT PARTICIPATORY AND HUMAN
CENTERED AND PROBABLY DESIGN
STRATEGIES WHICH WE OUR TRAINING
OUR STUDENTS TO DO BUT SHOULD BE
EMPHASIZED.
I AGREE AS A GENERAL THEME BUT I
THINK IN THE MEAT OF IT WE
SHOULD PUMP UP THE IDEA OF
SUCCESSFUL REHAB AND AT DESIGN
IS PARTICIPATORY AND HUMAN
CENTER
CENTE
CENTERED IT'S PROBLEM BASED
WE'LL HAVE THE HIGHER LIKELIHOOD
OF SUCCESS.
>> THIS WAS ADDRESSED WITH THE
STATEMENT WHERE YOU SAID THIS IS
THE NIH RESEARCH PLAN AND NOT A
SPECIFIC GROUP BECAUSE ONE OF
THE THINGS I WANTED TO POINT OUT
OR BRING UP WAS THE FACT THAT
NOT ALL -- AS WE TALK ABOUT
INCREASING THE PIPELINE OF
INDIVIDUALS WITH LIVED
EXPERIENCE INVOLVED IN RESEARCH,
I THINK WHAT OFTEN HAPPENS IS
YOU BECOME PIGEON HOLED TO
STUDYING THE POPULATION YOU
IDENTIFY WITH.
MAKING SURE WE'RE NOT SAYING WE
NEED TO THEN HAVE MORE DISABLED
RESEARCHERS DOING DISABILITY
WORK BUT JUST HAVING SO SO YOU
COVERED THAT.
THANK YOU.
>> ON MY OTHER HAT WE'VE.
CLEAR WE WANT MORE DISABLED
RESEARCHERS IN NIH SCIENCE
BECAUSE THAT TALENT IS NEEDED
EVERYWHERE.
I'M EXCITED ABOUT THE FOCUS ON
ENGAGING WITH CONTINUING MEDICAL
EDUCATION AND PREFERRED
EDUCATIONAL SOCIETIES BEING
INVOLVED ON THE EXCITE STUDY AND
THERAPY IS MOVING ALONG AND
BEING CALLED TO ASK WORKSHOP AND
GIVE TRAINING ON THIS
INTERVENTION AND THEN WE WERE
PULLED AWAY TO MORE RESEARCH AND
MORE GRANTS AND IT ALWAYS FELT
LIKE THIS LAG OF TRAINING
CLINICIANS AND THE SUPPORT FOR
THAT KIND OF IMPLEMENTATION SO
EXCITED ABOUT THAT AND WHEN I
THINK ABOUT HUMANITIES AND THANK
YOU FOR BRINGING THAT UP AND IS
IT TYING IN WITH HUMANISM AND
THE LIVED EXPERIENCE,
PARTICIPATORY ACTION RESEARCH
AND PART OF WHAT WE'RE LOOKING
FOR IS THE NATIONALITIES AND THE
ENDOWMENT AND THERE'S AN A
WORKSHOP AT EMORY ON FRIDAY AND
HOW DO I TAKE MY WORK IN THIS
AROUND USING HUMANITIES BASED
STRATEGY TO ADDRESS MY WORK
AROUND STROKE AND CARE GIVING.
FOR EXAMPLE, IF A THEME IS
STUDYING BARRIERS AND FOR PEOPLE
WITH DISABILITIES AND THE
HUMANITIES BASED APPROACH MIGHT
BE USING PHOTO VOICE AS A
MESSAGE, A VISUAL ARTS THAT
COMBINES NARRATIVE REFLECTION OF
PEOPLE WITH LIVED EXPERIENCE TO
DESCRIBE WHAT A BARRIER WOULD BE
TO CARE AND THEN ALSO PART OF
THE DISSEMINATION RESULTS AND
WITH THE INTENTION IT DRIVES
POLICY CHANGE IT'S USUAL VISUAL
ARTS AND NARRATIVE WRITING TO
CAPTURE WHAT LIKE FOR ME WHAT
I'M INTERESTED IN WHEN I THINK
OF BARRIERS TO CARE PARTNERS AND
EXPERIENCE AND TRYING TO GET
THEIR LOVED ONES TO CARE.
I'M NOT SURE IF THAT MADE SENSE.
>> OKAY.
WE'RE OVER TIME SO I'M GOING TO
THE NEXT SLIDE AND THE NEXT.
I'M GOING TO SIT ON THIS AND
DIGEST AND FEEL FREE TO E-MAIL
ME IF SOMETHING COMES TO YOU BUT
WOULD LIKE TO GET THIS DONE FER
JANUARY FOR A REQUEST OF
INFORMATION TO GET A SECOND
ROUND FOR THE THEMES GOING
FORWARD.
IN FEBRUARY WE'LL HAVE A SESSION
AND HAVE A CONFERENCE IN MARCH
AND THEN I HAVE A SESSION AT
ASNR.
THERE IS SOMEWHERE ELSE YOU
THINK IT WOULD BE GOOD I'VE
ALREADY GOTTEN FEEDBACK IT
SHOULD INCLUDE A SLIDE IN OTHER
PEOPLE'S PRESENTATIONS AS THEY
GO OUT TO THE STROKE MEETING OR
THE MEETING.
WE'LL DO THAT AND THEN IN MAY
I'LL ASK FOR YOUR FINAL
CONCURRENCE.
YOU DON'T HAVE TO APPROVE BUT I
WOULD LIKE YOUR CONCURRENCE ON
THE THEMES IN PLAY.
>> STEVE, I WANT TIME FOR
NOMINATIONS.
>> LET ME BEGIN WITH THE
FOLLOWING 20 -- NO.
TO BE HELPFUL I LOVE THE ONES
LISTED BUT SHOULD APTA AND OTA
SHOULD BE THERE AND SO FORTH?
>> THESE ARE SPECIFIC MEETINGS I
HAVE AN OPPORTUNITY BUT WE'RE
SENDING OTHERS.
>> SHOULD RHEUMATOLOGISTS AND
GERIATRICIANS BE THERE ?
THEY PROBABLY DO MORE RELAB THAN
REHAB TECHS DO AND WE NEED
PATIENTS WE NEED TO GALVANIZE
STROKE SUPPORT GROUPS AND STROKE
SUPPORT NET, ETCETERA AND REACH
OUT TO THOSE IN TOUCH WITH
STROKE SUPPORT GROUPS AND
SOCIALIZATION TO THE PATIENT IS
THE SUGGESTION.
>> IT'S CALLED REHAB NEED.
IT'S HIGH COURSE THE CONFERENCE
ON RELAB -- REHAB ROBOTICS AND
IFESS DIFFERENT CONFERENCES
COMING TOGETHER.
IT'S A NICE OPPORTUNITY.
>> ONE OF US WILL BE THERE.
>> SO THANK YOU FOR YOUR
CONTINUED SUPPORT.
THIS IS BE AN ONGOING
DISCUSSION.
IF YOU THINK OF OTHER THINGS YOU
KNOW WHERE WE ARE.
THE FINAL PIECE IS AS YOU KNOW
EACH HAVE FOUR-YEAR TERMS.
THAT FINISH OFFICIALLY
>> Reporter: JUNE 30th OF WHY
YOU ARE FOURTH YEAR MEANING THE
MAY MEETING IS YOUR LAST MEETING
AND THIS IS THE TIME TO NOMINATE
SOMEONE TO SERVES OUR NEXT
CLAIR.
-- CHAIR.
AS I THINK I PROMPTED WE'RE
LOOKING FOR NOMINATIONS AND I
NOTICED KATHLEEN EXPRESSED SOME
INTEREST.
>> I'M VERY INTERESTED IN
KEEPING REHABILITATION STRONG
AND I REALLY ENJOY BEING PART OF
THIS GROUP.
I WAS OFFERING TO HELP IN THAT
WAY IT'S NEEDED.
>> ANYBODY ELSE THAT WANTS TO --
>> I'LL ASSURE EVERYONE IT IS AN
EASY LIFT BECAUSE THERESA IS
PHENOMENAL.
>> RUNNING THE MEETING AND
ANYONE TO NOMINATE OR PICK ON?
>> WE ROTATE OFF.
>> THE PEOPLE IN THE SENIOR
CLASS WOULD NOT REALLY BE
APPROPRIATE ANYBODY ELSE?
OKAY.
SO CAN WE BRING THIS TO A CLOSE
A LITTLE BIT EARLY?
I THANK OUR VIEWING AUDIENCE.
I THINK OUR PEOPLE THE ACTIVE
PARTICIPANTS IT'S BEEN A GREAT
DAY SO FAR AS USUAL WE HAD GREAT
DISCUSSION AND I APPRECIATE OUR
NEW MEMBERS JUMPING IN AND
HITTING THE GROUPED.
-- GROUND.
I'LL CALL IT TO A CLOSE AND CALL
IT AT 10:00 A.M. EASTERN TIME
TOMORROW SAME PLACE.
AND THANK YOU.