WE'RE WELCOMING YOU BACK TO
THE NATIONAL ADVISORY BOARD ON
MEDICAL REHABILITATION RESEARCH.
THIS IS DAY TWO.
DAY ONE WILL BE POSTED ON THE
NIH VIDEOCAST SITE IF YOU WANT
TO CATCH UP ON THAT.
WE'RE COMING TO YOU FROM THE
NATIONAL INSTITUTES OF HEALTH,
AND WE'RE GOING TO START THIS
DAY, WE'RE GOING TO GO FROM
10:00 A.M. UNTIL 2:00 P.M.
EASTERN TIME, AND WE'RE GOING TO
START WITH AN UPDATE ABOUT NIH'S
NEW GRANT REVIEW PROCESS.
AS YOU FOLKS KNOW, A LOT OF OUR
FUNDING IS DRIVEN BY THE PEER
REVIEW PROCESS, AND IN AN EFFORT
TO MAKE IT EVEN MORE TRANSPARENT
AND EVEN MORE EFFECTIVE, THERE'S
BEEN SOME UPDATES TO THAT, AND
WE'RE FORTUNATE TO HAVE VALERIE
DURRANT COME TO US, THE DIRECTOR
OF THE DIVISION OF AIDS
BEHAVIORAL AND POPULATION
SCIENCES AT THE CENTER FOR
SCIENTIFIC REVIEW.
SHE'S A DEMOGRAPHER BY TRAINING,
AND WE'RE PLEASED TO HAVE HER
BACK TO TALK ABOUT THE
SIMPLIFIED REVIEW FRAMEWORK.
VALERIE.
>> ALL RIGHT, GOOD MORNING,
EVERYONE!
HAPPY TO BE HERE THIS MORNING.
THANKS FOR THE INTRODUCTION.
I'LL BE SPEAKING ON SOME OF THE
RECENT CHANGES OR CHANGES BEING
IMPLEMENTED FOR STRENGTHENING
NIH PEER REVIEW THAT WE REFER TO
AS THE SIMPLIFIED REVIEW
FRAMEWORK.
ACRONYM SRF.
HOPEFULLY I WON'T SLIP INTO THAT
TOO MUCH BUT WANTED TO PUT THAT
OUT FRONT.
SO JUST A REALLY BRIEF
INTRODUCTION AND REMINDER ABOUT
THE NIH REVIEW SYSTEM, WHICH
REALLY IS KNOWN AS KIND OF THE
GOLD STANDARD ACROSS THE WORLD.
PART OF THAT IS BASED ON THE
TWO-LEVEL PEER REVIEW THAT WE
DO.
THE FIRST STAGE, WHICH IS THE
REVIEW THAT WE'RE INVOLVED WITH
AT CSR IS THE EVALUATION OF
SCIENTIFIC MERIT, AND THAT IS
KIND OF WHAT MOST PEOPLE THINK
OF WHEN THEY THINK OF PEER
REVIEW, BUT THE SECOND LEVEL IS
THE ADVISORY COUNCILS, WHICH
ALSO INVOLVES MEMBERS OF THE
EXTRAMURAL COMMUNITY, THE
RESEARCH COMMUNITY, THAT THEN
TAKE INTO ACCOUNT THE INPUT FROM
THE FIRST LEVEL OF THE
SCIENTIFIC ASSESSMENT ALONG WITH
OTHER CONSIDERATIONS RELATED TO
BUDGET, PRIORITIES, OTHER
INTERESTS IN MIKI MAKING THOSE
DECISIONS.
THE REASON I MENTION IS BECAUSE
OUR FOCUS ON THE FIRST LEVEL IS
THAT SCIENTIFIC ASSESSMENT IN
ORDER TO KIND OF PROVIDE A CLEAR
AND DIRECT INPUT ON THAT.
SO MORE COMPLEX DECISIONS OR
OTHER FACTORS CAN BE
INCORPORATED IN THE SECOND
STAGE.
WE ARE OUTSIDE OF ALL OF THE
FUNDING ICs, SO NIH AS YOU
KNOW IS A CONGLOMERATE OF A
VARIETY OF DIFFERENT INSTITUTES
AND CENTERS, AND WE WORK AS A
SERVICE CENTER FOR ALL OF NIH
AND ARE NOT WITHIN ANY
PARTICULAR INSTITUTE OR CENTER.
OUR MISSION IS SIMPLE AND
STRAIGHTFORWARD AND PRETTY
SINGULAR.
OUR FULL FOCUS IS ENSURING THAT
NIH GRANT APPLICATIONS RECEIVE A
FAIR, INDEPENDENT, EXPERT,
TIMELY SCIENTIFIC REVIEW, AND TO
PROVIDE AND COMMUNICATE THAT
INFORMATION ALONG TO OUR
INSTITUTE AND CENTER PARTNERS SO
THAT THEY CAN MEET THE BROADER
NIH MISSION OF FUNDING THE MOST
PROMISING RESEARCH.
SO I'D LIKE TO JUST TOUCH ON THE
SCALE OF THIS BECAUSE IT IS A
MASSIVE SCALE THAT WE WORK AT.
CSR REVIEWED IN THE LAST FISCAL
YEAR OVER 66,000 APPLICATIONS,
WHICH IS JUST OVER THREE
QUARTERS OF WHAT NIH RECEIVES.
WE HAVE THE VAST MAJORITY OF THE
R01s, SMALL BUSINESS GRANTS,
AS WELL AS THE FELLOWSHIPS, AND
THEN WE ALSO REVIEW A NUMBER OF
THE PRESS INSTITUTE OFFICE OF
THE DIRECTOR INITIATIVES AND A
RANGE OF OTHER ACTIVITIES AS
WELL.
AND WE OBVIOUSLY DO THIS WITH A
LOT OF HELP.
AND SO AGAIN, JUST LAST YEAR, WE
INVOLVED OVER 19,000 REVIEWERS,
DID OUR WORK WITH 255 SCIENTIFIC
REVIEW OFFICERS, WHO ARE THE
FEDERAL OFFICIALS THAT RUN THOSE
MEETINGS, AND 1200 MEETINGS.
SO IT'S A LARGE SCALE OPERATION,
AND IT'S IMPORTANT TO KEEP THAT
IN MIND WHEN WE TALK ABOUT
EFFORTS THAT WE'RE MAKING TO
IMPROVE THOSE PROCESSES.
SO AS MENTIONED, I'M FOCUSING
TODAY ON THE SIMPLIFIED REVIEW
FRAMEWORK.
THESE ARE THE CHANGES THAT ARE
COMING IN TO BEING.
LET ME TELL YOU A LITTLE BIT,
I'M JUST GOING TO -- I KNOW A
LOT OF INFORMATION IS OUT ABOUT
THE SIMPLIFIED REVIEW FRAMEWORK
THESE DAYS, BUT I JUST WANT TO
KIND OF QUICKLY SKIM OVER THE
BASICS TO MAKE SURE EVERYONE IS
ON THE SAME PAGE.
SO WHAT'S THE MOTIVATION BEHIND
THE UPCOMING CHANGES?
THERE'S REALLY TWO.
SO THE FIRST IS WE WERE GETTING
LOTS OF FEEDBACK FROM STAFF,
FROM RESEARCHERS, FROM THE
COMMUNITY, FROM INSTITUTIONS,
FROM A RANGE OF INDIVIDUALS AND
ORGANIZATIONS THAT SAID PEER
REVIEW IS TOO COMPLICATED.
THE REVIEW CRITERIA INCLUDES
LOTS OF DIFFERENT
CONSIDERATIONS, AND IF YOU HAVE
BEEN A REVIEWER, YOU KNOW THE
REVIEW GUIDELINES SOMETIMES ARE
AS LONG AS THE APPLICATIONINGS
THEMSELVES AND THE
CONSIDERATIONS AWR SUPP YOU'RE D
TO THINK.
IT HAPPENS FOR A REASON BUT ALSO
THE END RESULT WAS THE REVIEWERS
WERE FACING A LOT OF
DISTRACTIONS FROM THEIR PRIMARY
GOAL.
THEIR PRIMARY GOAL IS TO ASSESS
THE SCIENTIFIC MERIT.
WE WANT THEM TO REALLY -- WE
WANT TO GET THEIR INPUT ON WHAT
WILL THE CONTRIBUTION OF THIS
RESEARCH BE, ACHED T AND THEY HO
ANSWER SO MANY LITTLE QUESTIONS
AND CONSIDER SO MANY OTHER
CONSIDERATIONS AS PART OF THAT
PROCESS, IT WAS EASY TO GET THAT
BIG PICTURE GOAL LOST.
SO THAT WAS THE FIRST.
THE SECOND, AGAIN WAS JUST KIND
OF ONGOING INPUT THAT WE WERE
RECEIVING WITH CONCERNS ABOUT
COMMENTS RELATED TO INFLUENCE OF
INVESTIGATORS AND INSTITUTIONS
AND REPUTATIONAL BIAS.
SO WELL-KNOWN INSTITUTIONS,
WELL-KNOWN INVESTIGATORS WERE
GETTING A PASS.
PEOPLE WERE ASSUMING, OH, THEY
KNOW WHAT THEY'RE DOING, THEY
CAN TAKE CARE OF IT, YEAH, THEY
HAVEN'T REALLY OUTLINED THE
DETAILS BUT IT'S OKAY, THEY
KNOW.
AND IN THE CONTEXT OF A FULL
RANGE OF APPLICATIONS WHERE
WE'RE REALLY TRYING TO ASSESS
MERIT, THAT'S A PROBLEM BECAUSE
IT MEANS THAT M ALLOCATIONS ARE
BEING ASSESSED SEPARATELY
DEPENDING ON HOW WELL SOMEONE IS
KNOWN.
AND THAT'S NOT THE GOAL.
THE GOAL IS REALLY TO ASSESS
WHAT'S IN THE APPLICATION AND
GIVE EVERYBODY KIND OF THE LEVEL
PLAYING GROUND.
SO WHAT WILL CHANGE WITH THE
CHANGES COMING.
FIRST IS WE HAVE ORGANIZED THE
CURRENT FIVE REVIEW CRITERIA,
THOSE WERE STAY THE SAME BUT
THEY'RE NOT ORGANIZED INTO THREE
FACTORS.
IN THE NEXT SLIDE, I'LL SHOW YOU
WHAT THOSE ARE.
THE INVESTIGATOR AND THE
ENVIRONMENT WILL NO LONGER BE
KIND OF A FULL, ELABORATE
ASSESSMENT.
REVIEWERS ARE ASKED TO SIMPLY
FOCUS ON WHETHER THE RESOURCES
AND EXPERTISE ARE APPROPRIATE OR
NOT.
IF APPROPRIATE, WE'RE DONE.
IF NOT, WE WANT TO HAVE GAPS
IDENTIFIED.
>> EXCUSE THE INTERRUPTION.
ARE THESE CHANGES YOU'RE
DESCRIBING CURRENT OR TO BE
IMPLEMENTED AT A SPECIFIC FUTURE
DATE?
>> TO BE IMPLEMENTED STARTING
WITH APPLICATIONS JANUARY 25TH
OF NEXT YEAR.
I HAVE A SLIDE ON THAT TOO.
THERE ARE A FEW OTHER CHANGES,
SOME OF THE ADDITIONAL REVIEW
CRITERIA SPECIFICALLY RELATED TO
INCLUSIONS IN CLINICAL TRIALS
ARE JUST KIND OF WRAPPED UP INTO
APPROACH, SO THEY USED TO BE
CONSIDERED AS PART OF APPROACH
AND THEN THE SECTION AT THE END
TO KIND OF TOUCH BACK ON THEM,
THAT CREATED A LOT OF CONFUSION
AND DUPLICATION, AND THEN WE'VE
MOVED ANY OF THE OTHER
CONSIDERATIONS THAT CAN BE
CONSIDERED BY NIH STAFF OUT OF
THE REVIEW ENTIRELY FOR THE PEER
REVIEWERS.
SO THIS IS JUST KIND OF A
SNAPSHOT OF A SUMMARY OF WHAT I
JUST SAID, SO AS I MENTIONED,
THE MAIN FACTORS THAT WE'LL BE
FOCUSING ON, REVIEWERS WILL BE
ASKED TO FOCUS ON IS, ONE, THE
IMPORTANCE OF THE RESEARCH,
WHICH INCLUDES AND INCORPORATES
SIGNIFICANCE AND INNOVATION, SO
REALLY WHAT IS THE VALUE OF THE
QUESTIONS AND THE PROJECT BEING
PROPOSED.
FACTOR TWO IS THE RIGOR AND
FEASIBILITY.
CAN IT BE DONE, CAN IT BE DONE
WELL, WILL IT BE REPLICABLE, ALL
THOSE CONSIDERATIONS, AND AS I
MENTIONED, THAT IS WHERE
CONSIDERATIONS RELATED TO THE
STUDY TIMELINE FOR CLINICAL
TRIALS AS WELL AS THE INCLUSIONS
OF THE SAMPLE FOR HUMAN SUBJECTS
APPLICATIONS WILL BE WRAPPED
INTO THAT FACTOR AND THAT
CONSIDERATION AT THAT POINT.
I ALREADY MENTIONED THE
EXPERTISE AND RESOURCES.
THESE WILL NOT GET A SEPARATE
FACTOR SCORE.
IT'S JUST KIND OF A PASS/FAIL,
SO YES, THERE'S APPROPRIATE
RESOURCES OR THERE ARE GAPS
IDENTIFIED.
IF GAPS ARE IDENTIFIED, THE
REVIEWERS CAN SPECIFY WHAT THOSE
GAPS ARE.
IN TERMS OF HUMAN SUBJECTS,
VERTEBRATE ANIMAL PROTECTIONS,
BIOHAZARDS ARE STILL PART OF THE
REVIEW AND WILL BE TOUCHED ON
AND CAN AFFECT THE SCORE.
AS I MENTIONED WITH THE
EXCEPTION OF BUDGET AND CHEMICAL
AND BIOLOGICAL RESOURCE
AUTHENTICATION, ALL OTHER
CONSIDERATIONS HAVE BEEN MOVED
OUT OF THE FIRST LEVEL OF PEER
REVIEW.
THIS IS AFFECTING MOST OF THE
RESEARCH PROJECT GRANT
APPLICATIONS, AND THERE ARE A
LOT OF DIFFERENT ACTIVITY CODES.
THIS IS A LIST OF ALL THOSE THAT
WILL BE CHANGING.
THERE'S A HANDFUL THAT WON'T,
BUT FOR THE MOST PART, THE VAST
MAJORITY OF THE RESEARCH
APPLICATIONS WILL BE MOVING TO
THE NEW FRAMEWORK.
ONE OF THE EXCEPTIONS FOR THE
RESEARCH APPLICATIONS IS THE
SMALL BUSINESS, THOSE WILL
CONTINUE UNDER THE CURRENT
GUIDELINES FOR THE TIME BEING.
AND AS MENTIONED AND I'LL
MENTION THIS A COUPLE OTHER
TIMES, THIS IS BEING
IMPLEMENTED -- SO WE'RE RIGHT AT
KIND OF THIS CRITICAL AND MOST
CONFUSING TIME OF THE
IMPLEMENTATION, BECAUSE IT WILL
BE -- IT'S RELEVANT FOR
APPLICATIONS WITH DUE DATES
JANUARY 25TH, THE NEXT SET OF
DUE DATES.
AND THAT WILL BE FOR THE SUMMER
REVIEW MEETINGS AND OCTOBER
COUNCIL.
SO LET ME TELL YOU A LITTLE BIT
ABOUT SOME OF THE MAJOR CHANGES
THAT YOU SHOULD BE LOOKING FOR
AND AWARE OF, AS WE IMPLEMENT IA
PRETTY MAJOR CHANGE TO REVIEW.
THE FIRST IS THAT OUR
APPLICATIONS HAVE TO COME IN TO
CURRENT NOTICES OF FUNDING
OPPORTUNITIES OR NOFOs, SO WE
ARE IN THE PROCESS OF REISSUING
ALL NOFOs THAT ARE CURRENTLY
OUT THERE SO THAT THERE IS -- SO
THAT ALL OF THE CURRENT ONES
HAVE A NEW RELATED NOFO.
SO YOU WANT TO MAKE SURE YOU'RE
PAYING ATTENTION TO THE NOFO.
YOU CAN TELL WILL HAVE THE DATES
ELIGIBLE, AND THEY ALL ARE BEING
UPDATED TO REFLECT THE REVIEW
FRAMEWORK, SO THAT SECTION
5 WHERE THE REVIEW CRITERIA ARE
SPELLED OUT IS WHAT IS BEING
CHANGED IN THESE.
SO THAT'S A LEGAL OBLIGATION
THAT WE DO HAVE TO SPECIFY HOW
APPLICATIONS ARE REVIEWED, SO
WE'RE IN THE PROCESS OF
REISSUING.
MANY HAVE ALREADY BEEN REISSUED.
AGAIN, ALL FOR DATES STARTING --
EARLIEST RECEIVE DATES OF
JANUARY 25TH, SO ANYTHING STILL
IN THE FUTURE.
THE PARENT FUNDING
OPPORTUNITIES, THE FINISHING
TOUCHES ARE STILL HAPPENING.
WE ARE EXPECTING THOSE TO BE
PUBLISHED ANY DAY.
IN FACT, I CHECKED YESTERDAY AND
THEY WEREN'T UP.
I DID NOT CHECK AGAIN TODAY, BUT
REALLY, THEY SHOULD BE UP ANY
TIME, SO WATCH FOR THOSE.
AND I'VE INCLUDED LINKS TO THE
NIH GUIDE WHERE ALL THE NOFOs
ARE PUBLISHED, AND IF YOU'RE
INTERESTED IN SUBSCRIBING TO THE
WEEKLY GUIDE UPDATES, THEY'LL
SEND YOU AN EMAIL WITH ALL THOSE
UPDATES.
SO PAY ATTENTION TO THAT.
MAKE SURE YOUR APPLICATION CAN
BE RECEIVED.
LET ME TOUCH ON APPLICATION
FORMS.
SO SIMPLIFIED REVIEW -- THE
SIMPLIFIED REVIEW FRAMEWORK FOR
THE RESEARCH PROJECT GRANTS DOES
NOT INVOLVE A CHANGE IN THE
APPLICATION, PER SE.
THE APPLICATION IS THE SAME.
THERE IS A SIMULTANEOUS AND
CONCURRENT CHANGE IN FORMS THAT
IS HAPPENING, HAPPENS EVERY FEW
YEARS AND THIS IS THE TIME, SO
FORMS I WILL BE COMING FOR THIS
SAME DUE DATE AND MOVING
FORWARD, SO THERE WILL BE A NEW
SET OF APPLICATIONS WITH SOME
MINOR CHANGES.
THE RESEARCH PLAN, ALL OF THE --
KIND OF THE GUTS OF THE
APPLICATION ARE THE SAME.
THAT'S NOT CHANGING.
THERE'S JUST SOME OTHERS.
AGAIN THAT'S ANOTHER KIND OF ANY
DAY NOW POSTING OF THOSE FORMS,
SO JUST WAITING FOR THE FINAL
RELEASE OF THOSE WITH THE FULL
SUITE OF INFORMATION THAT YOU'LL
BE NEEDED.
AND I WILL JAI ALAI THAT THERE
IS INFORMATION AND KIND OF
INSTRUCTIONS, PREINSTRUCTIONS
AVAILABLE, SO THAT IF YOU ARE
WORKING ON A GRANT NOW, YOU CAN
SEE WHAT'S EXPECTED TO COME, AND
THERE'S SOME INFORMATION
AVAILABLE THROUGH THESE LINKS.
SO THOSE ARE THE TWO BIG ONES IN
TERMS OF WHAT APPLICANTS WILL
NEED TO GET APPLICATIONS IN FOR
SOME OF THESE CHANGES.
THERE'S OBVIOUSLY A WHOLE LOT OF
WORK BEING DONE IN THE
BACKGROUND TO SUPPORT THIS MAJOR
CHANGE.
WE'RE CHANGING ALL OF THE
SYSTEMS, SO YOU MAY SEE SOME
CHANGES, CERTAINLY IF YOU'RE A
REVIEWER, IN THE SUMMER YOU'LL
SEE CHANGES TO OUR SYSTEM, BUT
WE'RE UPDATING ALL OF THE
SYSTEMS FOR THE NEW FACTORS
INSTEAD OF THE OLD CRITERION
SCORES, THE NOFOs, ALL THAT.
SO THAT'S HAPPENING.
WE CONTINUE TO DEVELOP AND POST
GUIDANCE FOR APPLICANT AND
REVIEWERS, AND I HAVE A SLIDE IN
A COUPLE OF SLIDES THAT GIVES
YOU KIND OF THE MAIN LINK WHERE
EVERYTHING YOU NEED TO KNOW AS
AN APPLICANT OR A REVIEWER IS
POSTED, AND THOSE ARE UPDATED
PROBABLY WEEKLY.
THERE'S JUST SOMETHING NEW UP
THERE ALL THE TIME, ONGOING
FREQUENTLY ASKED QUESTIONS,
RESOURCES AS THEY'RE AVAILABLE.
WE'RE PRETTY CAREFUL, WE HAVE A
PRETTY ELABORATE AND COMPLEX
ROLLOUT PLAN.
AS YOU KNOW, AND AS HAS ALREADY
BEEN HIGHLIGHTED THIS MORNING,
WE HAVE CURRENT APPLICATIONS
THAT ARE CONTINUING TO COME IN
AND BE REVIEWED UNDER THE
CURRENT SYSTEM RIGHT NOW.
WE'RE TRYING TO PREPARE FOR THE
COMING SYSTEM AND SO WE'RE
REALLY CAREFUL ABOUT WHEN WE
RELEASE INFORMATION SO AS NOT TO
CONFUSE PEOPLE.
DWOAPT WWE DON'T WANT TWOCOMPETS
OUT THERE RIGHT NOW.
SO ALMOST EVERYTHING YOU FIND
RIGHT NOW IS GOING TO BE RELATED
TO THE CURRENT SYSTEM, AND NOT
RELEVANT FOR THE FUTURE STARTING
IN THE SPRING, SO WE DO HAVE
INFORMATION AVAILABLE FOR
APPLICATIONS AND WHAT TO EXPECT
FOR WRITING YOUR APPLICATIONS
NOW, AND YOU'LL SEE MORE AND
MORE OF THAT AGAIN KIND OF ON A
REGULAR BASIS, NOW THAT THE
DEADLINES FOR THE CURRENT ROUND
OF REVIEW ARE DONE, AND ALMOST
EVERYTHING NOW IN TERMS OF
PREPARING APPLICATIONS IS
RELATED TO THE NEXT SYSTEM.
SO THAT IS COMING ONLINE, AND
THERE ARE A LOT OF INFORMATION
RESOURCES AVAILABLE.
FOR THE REVIEW, THE SAME THING
WILL HAPPEN IN THE SPRING.
SO RIGHT NOW ALL OF THE
INFORMATION ABOUT REVIEW IS
STILL BASED ON THE OLD SYSTEM,
BUT STARTING IN MARCH AND APRIL,
IT'S ALL GOING TO CONVERT AND
TRANSITION OVER.
SO WE HAVE LOTS OF MATERIALS,
GUIDELINES, TRAINING FOR
REVIEWERS, TRAINING FOR STAFF, A
WHOLE RANGE OF RESOURCES AND
MATERIALS THAT WILL BE ROLLED
OUT IN MARCH AND APRIL, ONCE THE
CURRENT SET OF REVIEWS ARE DONE
SO THAT WE DON'T HAVE THE
CONFUSION WITH REVIEWERS.
A FEW TIPS FOR PREPARING
APPLICATIONS RELATED TO THE NEW
FRAMEWORK.
AS MENTIONED, AND THIS IS ONE OF
THE MOST COMMONLY ASKED
QUESTIONS, THE FORM AND WHAT THE
APPLICATION WILL LOOK LIKE IS
NOT CHANGING.
SO YOU CAN CONTINUE TO WORK ON
YOUR IDEAS AND DEVELOP THE
RESEARCH PLANS, THOSE ARE NOT
CHANGING.
WE ALWAYS ENCOURAGE APPLICANTS
TO CONSIDER WHEN THEY'RE
PREPARING THEIR APPLICATION, THE
NOFOs CAREFULLY, ESPECIALLY
SECTIONS 4, WHICH OUTLINE THE
INTERESTS OF NIH IN TERMS OF THE
NATURE OF THE M ACATIONS AND HOW
TO PREPARE THOSE AS WELL AS
SECTION 5, WHICH IS THE REVIEW
CRITERIA.
SO IT MAY CHANGE A LITTLE BIT
HOW YOU PUT YOUR APPLICATION
TOGETHER, BUT THE APPLICATION
ITSELF WILL LOOK THE SAME, AND
THE GENERAL CONSIDERATIONS ARE
NOT CHANGING.
IF YOU'RE NOT AWARE, ALSO JUST
MAKE SURE AND REFER YOU TO
ASSIST AND GRANTS.GOV WORK SPACE
TECHNOLOGIES THAT CAN COPY --
HELP YOU COPY AND TRANSFER
APPLICATIONS FROM ONE FORM TO
ANOTHER.
THESE ARE ALREADY AVAILABLE, BUT
THAT MAY BE HELPFUL AS WE MOVE
INTO FORMS I.
I'LL HIT ON THE COUPLE OF THE
FREQUENTLY ASKED QUESTIONS THAT
COME UP A LOT IN THE
PRESENTATIONS.
SO AGAIN, WHAT IS OUR GOAL IN
THIS, WHAT IS REALLY MOTIVATING
THIS BIG MAJOR CHANGE?
AND IT'S REALLY A GOAL ON
FOCUSING ON IMPROVING THE
QUALITY OF REVIEW BY MAKING SURE
REVIEWERS HAVE THE TIME AND
SPACE TO REALLY FOCUS ON THE
VALUE OF THE RESEARCH AS OPPOSED
TO A LOT OF KIND OF THE
NITPICKING DETAILS OR
CONSIDERATIONS THAT OTHER PEOPLE
CAN ASSESS.
WE ALSO WANT A MORE CONSISTENT
APPROACH OR CONSIDERATION OF
INVESTIGATOR AND ENVIRONMENT.
SO THOSE ARE THE TWO MAIN
DRIVERS.
IN TERMS OF EVALUATION, THIS IS
A QUESTION, HOW ARE WE GOING TO
KNOW IF IT'S WORKING, WHAT ARE
WE GOING TO DO, HOW WILL WE
ASSESS IT?
WHENEVER YOU DO A LARGE SCALE
CHANGE, WE CAN'T DO KIND OF A
COMPARISON, BUT WE WILL CONTINUE
TO MONITOR CRITIQUES, TO MONITOR
DISCUSSIONS, TO MONITOR SCORING
PATTERNS TO LACK LOOK FOR DEVIS
FROM THE CURRENT AND TO MAKE
SURE WE'VE GOT ALIGNMENT.
LOTS OF TRAINING AND ACTIVITIES
GOING ON IN THAT SPACE.
WE'LL ALSO HAVE SURVEYS FOR
REVIEWERS FOR STAFF, FOR PEOPLE
INVOLVED IN DIFFERENT WAYS,
WE'LL BE ROLLING OUT.
AND THE OTHER QUESTIONS COME IN
AROUND TRAINING, AND THAT'S A
REALLY CRITICAL PIECE OF THIS,
AND WE ARE DOING A TREMENDOUS
AMOUNT OF STAFF TRAINING RIGHT
NOW AND HAVE REVIEWER TRAINING
PLANNED AND RESOURCES READY
INCLUDING TRAINING SLIDES,
VIDEOS, VIDEO TRAINING WITH
CHAIRS, GUIDES TO WRITING
CRITIQUES SO PEOPLE KNOW WHAT IS
APPROPRIATE COMMENTS, WHAT ARE
NOT APPROPRIATE COMMENTS, WHAT
INFORMATION IS WANTED IN EACH OF
THESE FACTORS AND THINGS LIKE
THAT.
SO WE'LL BE DEPLOYING THOSE
STARTING IN THE SPRING AS
MENTIONED.
QUESTION?
>> JUST A COUPLE.
I MEANT TO ASK THEM A LITTLE
EARLIER.
SO CAN YOU JUST CLARIFY, SO
USUALLY IN THE REVIEW SECTION,
IT COMES TO -- ONCE YOU FIND THE
STRENGTHS AND WEAKNESSES, YOU
LOOK AT HUMAN SUBJECTS, YOU LOOK
AT IS THE BUDGET -- DOES THE
BUDGET SEEM OKAY, AND YOU LOOK
AT RESOURCES AND OTHER TYPES OF
GUIDES.
ARE YOU SAYING THOSE ALL GO
AWAY?
>> NO, SO THE HUMAN SUBJECTS,
VERTEBRATE ANIMALS, BIOHAZARDS
ARE STILL PART OF REVIEW.
SO THOSE WILL BE HANDLED IN THE
SAME WAY THEY'RE BEING HANDLED
NOW.
AND WE WANT TO MAKE SURE THAT
THOSE COME UP IN DISCUSSION AND
THERE'S AN OPPORTUNITY FOR
REVIEWERS TO PROVIDE ANY
CONCERNS ABOUT HUMAN SUBJECTS
PROTECTIONS IF RELEVANT OR
VERTEBRATE ANIMALS OR KIND OF --
SO THOSE ISSUES WILL STILL
REMAIN IN REVIEW SIMILAR TO HOW
THEY ARE NOW.
>> SO BUDGET, NO BUDGET --
>> SO BUDGET ACTUALLY ALSO IS
STILL INCLUDED.
>> OKAY.
>> IT IS A FACTOR THAT DOES NOT
AFFECT SCORE, SO IS RAISED AFTER
SCORES HAVE BEEN SET BY THE
REVIEWERS.
WE TRY TO MINIMIZE -- THEAZ
PH -- THAT'SPHRASED WRONG.
OUR FOCUS ON REVIEWERS IS REALLY
GETTING REVIEWERS TO FOCUS ON
THE BIG PICTURE, IS THE BUDGET
APPROPRIATE RATHER THAN KIND OF
NITPICKING, WHETHER THEY'RE
GOING TO TOO MANY CONFERENCES OR
BUYING TOO MANY COMPUTERS OR
THINGS LIKE THAT.
SO THAT CONTINUES TO BE OUR GOAL
BUT, YEAH, THAT IS STILL PART OF
THE REGULATIONS THAT REVIEWERS
SHOULD SPEAK ON SO THAT'S STILL
THERE.
>> VERIFYING IS THE SCORE STILL
1 TO 9?
>> THE OVERALL IMPACT SCORE IS
STILL 1 TO 9, SO NO CHANGES TO
THAT SCORING SYSTEM, NO CHANGES
TO HOW PERCENTILING IS MANAGED.
THERE WILL BE ONLY TWO FACTOR
SCORES, SO RIGHT NOW THERE ARE
FIVE CRITERION SCORES.
THERE WILL BE TWO FACTOR SCORES.
THESE AGAIN ARE -- THEY'RE
ALMOST CONSIDERED INFORMATIONAL,
REALLY.
AND THEN THE THIRD FACTOR AS I
MENTIONED WILL NOT BE GETTING A
SCORE.
THAT'S THE EXPERTISE AND
RESOURCES, THAT WILL JUST BE
DEEMED ACCEPTABLE.
OR APPROPRIATE OR GAPS
IDENTIFIED.
>> OKAY.
THANK YOU.
>> GOOD MORNING.
THAT SAME SLIDE, THAT SAME
TOPIC, IT HAD CROSSED OUT
INCLUSION OF WOMEN, MINORITIES.
COULD YOU ELABORATE ON THAT A
BIT MORE, PLEASE?
>> YEAH.
SO IT'S CROSSED OUT IN THE
ADDITIONAL REVIEW CRITERIA
BECAUSE IT MOVED UP INTO FACTOR
TWO.
SO WHAT WAS HAPPENING BEFORE IS
THAT THE DESCRIPTION OF THE
CURRENT APPROACH INCLUDES
CONSIDERATION OF STUDY
POPULATION IS CLEARLY IMPORTANT,
AND THEN WHAT WOULD HAPPEN IS
THAT IT WOULD COME UP AGAIN AS
INCLUSIONS AND IT WAS CREATING
KIND OF CONFUSION OF WHY WE'RE
ASKING TWICE OR WHAT SHOULD BE
CONSIDERED PART OF APPROACH AND
WHAT SHOULD BE CONSIDERED IN
THIS ADDITIONAL REVIEW CRITERIA,
AND REALLY WE'RE TRYING TO GET
AT ALL THE SAME THING SO WE JUST
PUT THAT ALL TOGETHER UNDER OUR
APPROACH.
>> DOES THAT MEAN THAT THE
SECTION IS -- THAT -- BECAUSE
THERE WAS A SEPARATE SECTION FOR
DESCRIBING YOUR
INCLUSION/EXCLUSION, I MEAN THAT
WOMEN AND MINORITIES, ARE THOSE
SECTIONS STAYING OR THEY'RE NOW
GOING AWAY AND SHOWING UP
SOMEWHERE ELSE?
>> THEY'RE STILL IN THE
APPLICATION.
SO THAT HAS NOT CHANGED.
AND THERE WILL STILL BE KIND OF
UNDER FACTOR TWO, IN ADDITION TO
THE COMMENTS, THERE WILL BE THE
SAME WAY THAT REVIEWERS CAN KIND
OF SAY YES, IT'S JUSTIFIED
APPROPRIATELY OR I CAN'T
REMEMBER THE EXACT PHRASING, BUT
THAT BOX WILL STILL BE THERE.
IT'S JUST --
>> SO YOU'LL STILL HAVE A
SEPARATE SECTION, ARE YOU DON'T
HAVE TO ROLL IT INTO YOUR
APPROACH?
>> YES.
YEP, YEP.
YEP, THAT IS ALL STAYING THE
SAME IN TERMS OF HOW IT'S BEING
INCORPORATED INTO THE
APPLICATION.
AND LIKE I SAID, IT'S JUST
MOVING, SO THE CONSIDERATION IS
THE SAME, NOTHING HAS CHANGED
ABOUT THAT.
WE'RE JUST TRYING TO MAKE IT
LESS CONFUSING, NOT TALKING
ABOUT IT TWO DIFFERENT TIMES IN
TWO DIFFERENT PLACES.
>> -- EMPOWERED BECAUSE IT'S
PART OF A SCORE NOW RATHER THAN
SATISFACTORY OR UNSATISFACTORY.
>> YOU KNOW, IT WAS ALWAYS PART
OF THE SCORE, BUT THAT'S PART OF
THE CONFUSION, RIGHT?
IS THAT PUTTING IT AT THE END
MADE IT SEEM LIKE, WAIT, THIS IS
DIFFERENT, IS THIS -- SHOULD
THIS ONLY BE CONSIDERED HERE,
SOME REVIEWERS WOULD JUST KIND
OF CONSIDER IT MORE
ADMINISTRATIVELY, OTHERS WOULD
DO IT BOTH.
I HEAR MANY TIMES PEOPLE WOULD
TALK ABOUT THEY HAVE NOT
INCLUDED THE RIGHT STUDY
POPULATION, THEY'RE MISSING THIS
GROUP OR THIS GROUP, AND THEN
THEY'D GET DOWN AND SAY
INCLUSIONS ARE FINE.
SO THERE'S SOME CONFUSION THERE
TOO, SO TRYING TO SOLVE ALL
THOSE PROBLEMS.
>> CAN I JUST FOLLOW UP WITH ONE
MORE QUESTION, ACTUALLY TWO.
>> SURE.
>> ONE IS, THE DATA MANAGEMENT,
I KNOW THERE WAS A CHANGE IN
TERMS OF DATA MANAGEMENT,
SAFETY, AND IT'S STILL ACTUALLY
A LITTLE CONFUSING BECAUSE THERE
WAS A RESOURCE PAGE AND NOW
THERE IS ALSO A DATA -- IT
WASN'T DATA SHARING.
HOW DOES THAT GET EVALUATED?
BECAUSE I'VE SEEN -- THERE IS NO
CLEAR PLACE THAT THAT'S BEING
EVALUATED, BUT YOU GET A DING
FOR IT WHERE PEOPLE ARE GOING
TO, YOU'RE NOT SHARING YOUR
DATA, BUT WHERE DOES THAT FALL
UNDER IN NEW CRITERIA?
BECAUSE IT'S ALREADY CREATED A
LITTLE BIT OF A WEIRD --
>> IT HAS AND WE'RE HOPING THIS
HELPS CLARIFY THAT AGAIN EVEN
FURTHER, SO IT IS NOT PART OF
THE REVIEW CRITERIA NOW.
THE DATA SHARING AND RESOURCES
IS PULLED OUT.
THERE'S A COUPLE OF EXCEPTIONS,
SO IT GETS A LITTLE CONFUSING TO
TALK ABOUT, BUT IN GENERAL, IT
IS NOT PART OF THE REVIEW
CONSIDERATIONS RIGHT NOW.
IT'S SOMETHING THE PROGRAM
ASSESSES AS WE MOVE FORWARD.
THAT WILL BECOME EVEN CLEARER.
SO WE REALLY TRIED TO STRIP OUT
FACTORS THAT HAVE A HEAVY POLICY
DEFINITION OR CONSIDERATIONS
WHERE PROGRAM CAN DO A BETTER
ASSESSMENT OF IT THAN REVIEWERS.
I MEAN, REVIEWERS KNOW THE
SCIENCE BEHIND IT BUT THEY DON'T
NECESSARILY KNOW WHAT THEY'RE
SUPPOSED TO BE LOOKING AT WITH
SOME OF THESE CONSIDERATIONS.
>> IF I COULD JUST ASK YOU, THE
DATA MANAGEMENT AND SHARING
PLANS, WHICH SOUNDS A LOT LIKE
DSMBs BUT THOSE ARE SEPARATE,
DATA MANAGEMENT SHARING PLANS
ARE REVIEWED BY PROGRAM AND
REVIEWERS ACTUALLY DON'T EVEN
SEE THEM IN THE APPLICATION.
THEY ONLY JUDGE WHETHER THERE IS
A BUDGET APPROPRIATE.
DON'T ASK ME HOW, BUT -- SO
REVIEWERS ARE NOT SEEING THOSE
AND YOU'LL BE WORKING WITH
PROGRAM ON ANY UPDATES THAT THEY
MAY NEED AFTER REVIEW.
>> DO THE REVIEWERS SEE THE
RESOURCE PLANS?
>> RESOURCE SHARING IS DIFFERENT
THAN DATA MANAGEMENT AND
SHARING.
SO IF YOU'RE DEVELOPING A NEW
MOUSE MODEL, THAT WOULD BE A
RESOURCE THAT YOU WOULD THEN
HAVE TO TALK ABOUT HOW YOU'RE
SHARING, THAT'S WHERE THAT 500K
LIMIT OR BUDGET COMES IN.
SO SOME NOFOs STILL HAVE
RESOURCE SHARING, BUT IN
GENERAL, IT'S NOT IN ALL
APPLICATIONS.
>> MY LAST QUESTION IS AROUND
TRAINING.
I NOTICE THAT THE CAREER
DEVELOPMENT AND THE TRAINING
AWARDS WERE NOT IN YOUR LIST.
ARE THEY ALSO BEING EVALUATED OR
CHANGED IN TERMS OF THE REVIEW?
>> YOU ARE TOTALLY SETTING ME UP
TO GO BACK TO MY LAST FEW SLIDES
AND THEN WE CAN OPEN BACK UP FOR
QUESTIONS.
I'LL GET BACK TO WHERE WE WERE.
THERE IS A SIMULTANEOUS OR
CONCURRENT CHANGE THAT IS
HAPPENING FOR FELLOWSHIP
APPLICATIONS.
SAME TIMING.
AND SOME SIMILARITIES, BUT IT'S
ACTUALLY A COMPLETELY DIFFERENT
PROJECT THAT'S NOT PART OF
SIMPLIFIED REVIEW FRAMEWORK.
SO WHAT ARE THE CHANGES COMING
TO THE FELLOWSHIP APPLICATION
AND REVIEW CRITERIA?
SO AGAIN, KIND OF A SIMILAR
PROCESS AND SIMILAR GOALS,
RESPONDING TO A LOT OF FEEDBACK
FROM THE COMMUNITY ABOUT THE
REVIEW OF FELLOWSHIPS AND
WHETHER THE FELLOWSHIPS WERE
EVEN -- THE APPLICATIONS WERE
EVEN GETTING THE RIGHT
INFORMATION TO BE EVALUATED
RIGHT NOW.
SO VERY COMPREHENSIVE REVIEW
ACROSS NIH ABOUT WHAT WE WANTED
THE FELLOWSHIP PROGRAM TO BE AND
HOW TO BEST ALIGN THE
APPLICATION AND THE REVIEW
CONSIDERATIONS TO ACHIEVE THAT.
SO THE BIG CHANGES COMING FOR
THE FELLOWSHIP APPLICATIONS AND
REVIEW, SO THERE ARE SOME
CHANGES TO THE APPLICATIONS WITH
FELLOWSHIPS, I WANT TO NOTE THAT
DIFFERENCE.
AGAIN, TO BETTER FOCUS THE
REVIEWER ATTENTION ON THREE KEY
ASSESSMENTS.
I'LL HIT THOSE IN THE NEXT SLIDE
BUT THEY'RE LISTED HERE AS WELL.
TO ENSURE THAT THE BROAD RANGE
OF CANDIDATES AND RESEARCH
TRAINING CONTEXTS WILL BE
CONSIDERED, REALLY BROADENING
THE POOL OF WHAT IS AN
APPROPRIATE FELLOWSHIP.
THERE WERE SOME KIND OF
ASSUMPTIONS BEING MADE ALONG THE
WAY THAT ASSUMED -- THE RESEARCH
FIELD HAS CHANGED AND RESEARCH
TRAINING INVOLVES A WHOLE LOT OF
PLACES AND TYPES OF ACTIVITIES
AND WE WANT TO MAKE SURE THE
FULL RANGE OF THOSE ARE PART
OF -- WITHIN THE SCOPE, AND THEN
AGAIN MAKING SURE THAT
CANDIDATES ARE BEING CONSIDERED
ON THEIR OWN MERITS, NOT THE
MERITS OF THEIR SPONSOR, NOT THE
MERITS OF THE INSTITUTION OF
WHERE THEY'RE COMING FROM OR
APPLYING TO.
MORE INFORMATION IS AVAILABLE AT
THE GUIDE NOTICE AND THEN THE
LINKS THAT I HAVE COMING UP IN A
SECOND.
THIS IS JUST KIND OF AGAIN THE
OVERALL SCREENSHOT OF WHAT WILL
BE CHANGING IN THE REVIEW TIER
REVIEWCRITERIA.
THE CANDIDATE PREPAREDNESS AND
POTENTIAL, PULLING THEM OFF
GRADES, PULLING THEM OFF OF SOME
OF THE REALLY KIND OF WHAT
LOOKED TO BE EASY INDICATORS AND
REALLY NOT GOOD INDICATORS OF
ALL KIND OF THAT FUTURE
POTENTIAL PREPAREDNESS.
SO REALLY TRYING TO HELP BOTH
APPLICANTS IN WRITING THEIR
APPLICATIONS AND REVIEWERS THINK
FORWARD, WHERE ARE THEY GOING
WITH THIS, WHAT ARE THEY
PROPOSING TO DO AND HOW WILL
THAT HELP THEM DEVELOP A
RESEARCH CAREER VERSUS WHAT HAVE
THEY PROVEN IN THE PAST.
LESS EMPHASIS ON THE PAST, MORE
ON THE FUTURE.
IT STILL INVOLVES THE SAME
RESEARCH TRAINING PLAN, WHICH IS
A SIGNIFICANT COMPONENT OF THE
APPLICATION, WHAT ARE YOU
PROPOSING TO DO IN TERMS OF
COURSE WORK ACTIVITIES AND AN
ACTUAL RESEARCH PROJECT TO
ADVANCE.
OR TO FORM THE
FELLOWSHIP, AND THEN COMMITMENT
TO THE CANDIDATE IS THE THIRD
MAIN CONSIDERATION, INCLUDING
THE -- SO THIS IS -- AND THIS IS
WHERE THE BULK OF THE
APPLICATION HAS CHANGED, REALLY
BEING VERY CLEAR IN THE
APPLICATION, WHICH SECTIONS
SHOULD BE FILLED UP, THE SPONSOR
VERSUS THE APPLICANT, SO THAT
THERE'S MORE CLARITY OF WHO'S
WRITING WHAT AND WHAT
INFORMATION IS COMING FROM THE
CANDIDATE VERSUS THE SPONSOR,
AND A CLEAR STATEMENT AND PRETTY
STRUCTURED AND FORMATTED, FORMS
AND INSTRUCTIONS SO MATERIALS
WERE GETTING TO LOOK MORE
SIMILAR ACROSS APPLICATIONS AS
OPPOSED TO SOME OF THE
DIFFERENCES WE SEE.
SO AS I MENTIONED, THAT IS WHERE
THE CHANGES TO THE FELLOWSHIP
APPLICATION COME IN, SO THE
APPLICATION HAS BEEN REVISED TO
VERY MUCH ALIGN WITH REVIEW
CONSIDERATIONS SO THAT IT'S
CLEAR WHAT YOU NEED -- THE
INFORMATION THAT NEEDS TO BE
PROVIDED AS WELL AS HOW THOSE
WILL BE ASSESSED.
GRADES ARE NOT REQUIRED OR
ALLOWED.
AND AS MENTIONED, A SHORTER,
MORE STRUCTURED LANGUAGE IN
ORDER TO PROVIDE CLARITY AS WELL
AS GET MORE CONSISTENCY.
FOSH BOTH RPGs AND Fs, THE
TIMELINE IS THE SAME.
SO ALL APPLICATIONS WITH JANUARO
THERE'S A HANDFUL OF DUE DATES
COMING IN BEFORE THEN, BUT NOT
MANY, SO IT'S ALMOST EVERYTHING
NOW IN THE FELLOWSHIP OR THE
RPGs THAT WILL BE COMING IN.
AND WE KNOW OUR COUNCIL AND
REVIEW CYCLES AND ALL THAT IS A
LITTLE BIT CONFUSING, SO JANUARE
AND AFTER WILL BE THE SUMMER
REVIEWS AND OCTOBER COUNCIL.
HERE IS KIND OF THE TWO MAGIC
SLIDES.
OR THIS IS THE MAGIC SLIDE WITH
TWO CRITICAL LINKS, ACTUALLY YOU
CAN GET TO BOTH FROM THE SAME
OER LANDING PAGE.
IF YOU TAKE NOTHING ELSE AWAY,
THIS IS THE KEY SLIDE.
EVERYTHING I'VE PRESENTED TODAY,
YOU CAN FIND EITHER CURRENTLY OR
SOON, COMING SOON ON THIS -- ONE
OF THESE TWO SLIDES.
SO THERE'S ONE FOR THE RESEARCH
PROJECT GRANT.
IF YOU LOOK, IT KIND OF -- THE
LEFT-HAND SIDE OF THE SLIDE, YOU
SEE THERE'S A WHOLE SECTION, SO
UNDER SIMPLIFYING REVIEW PROJECT
GRANTS, THERE'S A SECTION ON
BACKGROUND, THERE'S A SECTION ON
THE HISTORY, THERE'S A SECTION
ON GUIDANCE FOR APPLICANTS, A
SECTION ON GUIDANCE FOR
REVIEWERS, FREQUENTLY ASKED
QUESTIONS THAT ARE REGULARLY
UPDATED.
SO THIS IS REALLY KIND OF YOUR
ONE-STOP SHOP FOR RPGs AND
THEN ONE FOR FELLOWSHIPS THAT
SUMMARIZES EVERYTHING.
LET ME END ON A RELATED BUT JUST
KIND OF SLIGHTLY DIFFERENT
PUBLIC SERVICE ANNOUNCEMENT.
THESE CHANGES ARE JUST ONE OF
MANY THAT CSRs ENGAGED IN TO
PROMOTE THE HIGHEST QUALITY AND
FAIR REVIEW.
AND WE DO HAVE REPORT BIAS.
IT'S KINDS OF A MISNOMER BECAUSE
IT'S NOT JUST BIAS, IT'S ALSO
FAIRNESS.
FLAWS IN REVIEW, CONCERNS ABOUT
REALLY ANYTHING IN A KREE TEEK
CRITIQUE ORREVIEW PROCESS.
EVERY ALLEGATION THAT COMES TO
US THROUGH THIS BOX OR THROUGH
OTHER AVENUES, SOMEONE REACHES
DIRECTLY OUT TO ME OR TO AN SRO
OR SOMETHING, WE FOLLOW THE SAME
PROCESS.
WE DO LOOK AT EVERY ALLEGATION.
AND EVERY CONSIDERATION, AND IF
WE AGREE THAT THERE WAS BIAS OR
A FLAW IN THE REVIEW, WE WILL
RE-REVIEW THE APPLICATION WITH
THE LEAST POSSIBLE PENALTY TO
THE P.I.
SO WE TRY TO DO IT WITHIN THE
SAME COUNCIL ROUND SO THAT
THERE'S NO DELAY IN FUNDING AND
IF WE DON'T AGREE, WE'LL REFER
IT BACK, AND THE STANDARD
APPEALS PROCESS STILL APPLIES.
SO THIS IS KIND OF A PARALLEL
PROCESS TO THE APPEALS.
WE DO FOLLOW UP WITH REVIEWERS,
IF REVIEWERS MAKE INAPPROPRIATE
COMMENTS AND THAT'S THE CAUSE OF
THE BIAS OR THE FLAWS IN THE
REVIEW, WE WILL LET THEM KNOW.
AND WE HAVE SOME DIFFICULT
CONVERSATIONS AND WE HAVE SOME
CONSIDERATIONS AND HE THEY AND ,
I DID NOT MEAN TO SAY THAT.
WE DO SIMILAR ACTIVITIES WITH
CRITIQUES AS THEY'RE COMING IN,
OUR SROs ARE ACTIVELY KIND OF
READING THOSE, REVIEWING THOSE
IF THEY SEE COMMENTS THAT
SUGGEST POTENTIAL BIAS OR JUST
KIND OF -- COMMENTS OUTSIDE THE
REVIEW CRITERIA, THEY ARE
REACHING OUT AND TRYING TO GET
CLARIFICATION ON THOSE AND WE DO
TAKE ACTION AS NEEDED.
SO WITH THAT, I CAN GO BACK IF
THERE ARE ANY REMAINING
QUESTIONS, HAPPY TO ANSWER.
>> MICHELLE.
>> I'M CURIOUS, SOMETHING YOU
SAID MADE ME THINK ABOUT
EXPERIENCES THAT I'VE HAD.
IN TERMS OF THE -- YOU SAID IF
SOMEONE WROTE SOMETHING KIND OF
THAT HIT YOU WRONG IN THEIR
REVIEW CRITIQUE.
YOU OFTEN DON'T KNOW IF THAT WAS
THEN EXPRESSED OUT LOUD DURING
THE DISCUSSION SECTION BECAUSE
THAT'S NOT ALWAYS MAYBE REPORTED
BY THE SRO OR THE PERSON
CHAIRING IT.
SO HOW DOES THAT GET ADDRESSED,
YOU KNOW, YOU REACH OUT TO THE
REVIEWER AND GO, OH, THIS WAS
INAPPROPRIATE, BUT THE IMPACT OF
IT HAS ALREADY AFFECTED THE
CANDIDATE, AND IT'S VERY HARD
FROM YOUR PERSPECTIVE TO
JUDGE -- TO RE-REVIEW BASED ON
THAT, UNLESS IT'S REALLY
EGREGIOUS, BUT YOU'RE NOT SURE
IF IT DID AFFECT THE PANEL?
SO I'VE SEEN THAT AND I'VE
EXPERIENCED THAT.
AND I JUST WONDER ABOUT THAT,
BECAUSE I DON'T KNOW IF THIS
PROCESS REALLY, YOU KNOW,
ALLEVIATES THE PAIN THAT THAT
WOULD HAVE ALREADY CAUSED.
>> SO WE CAN'T ALLEVIATE ALL
PAIN.
IT'S A GOOD QUESTION.
THERE'S A COUPLE THINGS I WANT
TO HIGHLIGHT.
ONE IS, THE CRITIQUES FROM THE
REVIEWERS ARE THE CRITIQUES FROM
THE REVIEWERS.
IT IS OUR PRACTICE TO NOT EDIT
THOSE, AND TO NOT TRY TO
INFLUENCE THOSE, AND SO WE WILL
RELEASE THEM.
AND LANGUAGE IS CHALLENGING,
LANGUAGE IS TRICKY ESPECIALLY
WHEN WE'RE TALKING ABOUT FAIRLY
BRIEF COMMENTS THAT HAPPEN IN
REVIEW.
WE'RE IN THE BUSINESS OF HAVING
TO TRY TO FIGURE OUT THE
MEANINGS.
SO BUT THERE ARE SOME COMMENTS
THAT IF THEY'RE IN A CRITIQUE,
WE CONSIDER TO HAVE INFLUENCED
THE REVIEW, PERIOD.
THIS IS -- IT'S KIND OF LONG
TERM CULTURE CHANGE.
I'LL REFER YOU BACK TO THAT
SLIDE AT THE BEGINNING OF THE
66,000 APPLICATIONS.
IT'S A LARGE SCALE OPERATION,
IT'S HARD TO CATCH EVERYTHING
EVEN WHEN WE'RE PAYING ATTENTION
TO IT.
AND YOU'RE GOING TO READ THE
COMMENTS DIFFERENTLY THAN WE
READ THE COMMENTS.
AND THAT'S ONE OF THE REASONS
WHY WE HAVE OPENED UP THE
REPORTING BOXES AND THINGS LIKE
THAT TO SAY HEY, YOU KNOW, WE
MAY HAVE MISSED IT.
SO YES, IF YOU'VE SEEN THESE IN
THE PAST, I STILL ENCOURAGE YOU
TO COME FORWARD.
IT'S AN ITERATIVE PROCESS AND IT
SOMETHING THAT WE DO CARE ABOUT,
AND AGAIN, KIND OF -- IT PLAYS
OUT DIFFERENTLY IN EVERY CASE.
WE DO -- IN SOME CASES, SOME OF
THE ISSUES IN CRITIQUES HAVE
BEEN RESOLVED IN DISCUSSION AND
THEY DON'T GET EDITED POST
DISCUSSION.
SO IT'S A LITTLE TRICKY, BUT IF
YOU SEE SOMETHING WE WANT TO
HEAR ABOUT IT AND WE HAVE
RE-REVIEWED MANY, MANY
APPLICATIONS EVEN AFTER RELEASE
OF SCORES AND SUMMARY
STATEMENTS, AT VARIOUS
PROCESSES, SO WE'VE PULLED THEM
RIGHT BEFORE THEY'VE ACTUALLY
GONE TO DISCUSSION, WE'VE PULLED
THEM AFTER DISCUSSION, BEFORE
SUMMARY STATEMENTS HAVE BEEN
RELEASED AND WE WILL ADDRESS
THEM ANY TIME WITHIN THE CYCLE.
BUT WE DO -- ESPECIALLY IF
THERE'S A COMMENT WHERE THERE IS
A CLEAR POTENTIAL FOR BIAS.
>> BOB?
>> I JUST WANT TO
UNCHARACTERISTICALLY PROVIDE
POSITIVE FEEDBACK.
THESE CHANGES ARE FANTASTIC.
I THINK THE CHANGES TO THE
RESEARCH AWARDS ARE REFLECTING
WHAT'S BEEN GOING ON, BUT IT'S
BEEN CONFUSING TO APPLICANTS
BECAUSE THE OVERALL SCORE ISN'T
OBVIOUSLY REFLECTED BY THE
INDIVIDUAL COMPONENTS, SO I
THINK THAT'S REALLY GREAT.
AND I THINK TAKING THE MENTOR
BIAS OUT OF THE -- THE MENTOR
INSTITUTION BIAS OUT OF THE
TRAINING AWARDS IS JUST REALLY
FREIGHT, SO THANK YOU.
AND TO EVERYBODY THAT WAS
INVOLVED IN THIS.
>> THANK YOU.
GREAT CHANGES.
GOING BACK TO MICHELLE'S
COMMENTS, I THINK IT'S GOING TO
BE UP TO THE REVIEWERS AND THE
SRO TO DETECT THOSE THINGS AND
TRY TO ADDRESS THEM RIGHT THERE
AND, YOU KNOW -- THE REVIEW, SO
WE NEED TO BE MORE CAREFUL AS WE
READ THEM.
MY OTHER COMMENT OR -- YOU KNOW,
IN TERMS OF DATA SHARING, SO
WHEN YOU ASK FOR A BUDGET FOR
THAT, BUT YOU DON'T SEE IT, IS
THAT WHAT IS HAPPENING HERE?
SO WE WOULD -- PEOPLE WITH NO
REVIEW BUDGET RELATE TO DATA
SHARING BECAUSE THEY DON'T GET
ACCESS TO THAT?
>> THE REVIEWERS COMMENT ON
WHETHER THE BUDGET IS ACCEPTABLE
FOR DATA MANAGEMENT.
>> OKAY.
>> SO IF YOU HAVE $0 COMMITTED
TO DATA SHARING AND MANAGEMENT,
MAYBE THAT'S NOT THE GOOD
NUMBER.
BUT YEAH, BUT IT'S A PROGRAM.
>> SO I HAVE SEEN THAT SOMETIME
THERE ARE SOME TEMPLATES FOR AN
ESTIMATE.
I THINK THAT WOULD BE GREAT TO
SORT OF HARMONIZE THIS ACROSS AT
LEAST TO START.
>> YES, THERE ARE RESOURCES AND
WE CAN SEND THEM TO YOU.
>> ONE LAST QUESTION.
>> SO I THINK -- I DON'T KNOW IF
I WAS READING -- I WAS READING
ONE OF THE NIH ADMIN STUFF THAT
CAME OUT OF MAYBE YOUR GROUP
THAT WAS TALKING ABOUT THE USE
OF A.I. TO SUPPORT ALL THESE
CHANGES IN THE MANAGEMENT OF
THESE APPLICATIONS.
SO IT HAS COME UP BEFORE BECAUSE
I THINK IT IS A GENERAL QUESTION
AS HOW -- IS IT ACCEPTABLE TO
USE A.I. FOR REVIEW OR NOT.
I HAVE PERSONALLY NOT BEEN
BECAUSE I KNOW THAT PUTTING
SOMEONE'S GRANT INTO A THING IS
NOT OKAY, BUT IT'S COMING UP AND
I WONDERED WHEN I READ THAT NOTE
ABOUT HOW NIH MIGHT BE FIGURING
OUT HOW TO USE ML TO THEIR
BENEFIT, THAT MADE ME THINK HOW
IS THIS WHOLE NATURAL LANGUAGE
PROCESSING/CHATGPT BEING MANAGED
IN TERMS OF WRITING AND
ORGANIZING YOUR THOUGHTS, YOUR
REVIEWS, ET CETERA, OR OUR
THOUGHTS, OUR REVIEWS?
>> YEAH, THAT'S A BIG QUESTION
SO I'LL JUST KIND OF HIT ON A
COUPLE THINGS.
ONE, NIH DOES HAVE A POLICY THAT
THEY'VE PUT OUT ON A.I. THAT
DOES VERY CLEARLY STATE THAT
REVIEWERS SHOULD NOT BE USING
A.I., STAFF REVIEWERS SHOULD NOT
BE USING A.I. WITH APPLICATIONS
FOR ANYTHING RELATED TO THOSE
ACTIVITIES BECAUSE OF THE
CONFIDENTIALITY AND THE
SCIENTIFIC KNOWLEDGE THAT IS
INCLUDED IN THEM.
THAT DOES NOT APPLY TO
APPLICATION WRITING.
AND IT ALSO DOES NOT APPLY OR --
WE DO USE AUTOIMMUNE, WE'VE GOT
LARGE TEAMS, MULTIPLE I.T. TEAMS
WORKING ON DIFFERENT WAYS TO USE
THOSE TECHNOLOGIES FOR
EFFICIENCIES AND QUALITY AND A
RANGE OF OTHER THINGS, BUT
VERY -- WITH AGAIN KIND OF
FOLLOWING SOME PRETTY CAREFUL
POLICIES TO MAKE SURE THAT IT IS
ALL INTERNAL SYSTEMS.
AS YOU KNOW, IT'S A RAPIDLY
MOVING FIELD, AND SO IT IS
SOMETHING THAT WE ARE BOTH
TRYING TO USE FOR OUR OWN
PROCESSES AND BENEFIT AWARE OF
THE POTENTIAL USES IN THE
COMMUNITY AND TRYING TO NAVIGATE
THAT WHOLE SPACE AS IT MOVES
MORE QUICKLY.
ANYBODY CAN KEEP UP WITH.
BUT OER IS KIND OF THE MAJOR
ORGANIZATION WITHIN NIH THAT IS
GUIDING THAT EFFORT.
>> VALERIE, THANK YOU SO VERY
MUCH.
>> I WANT TO THANK VAL REA FOR
MVALERIE FORMAKING THE ROUNDS AE
SLINGS AND ARROWS, AND ALSO OF
COURSE YOUR DAY JOB ABOUT
LEADING A SECTION OF REVIEW AND
RUNNING YOUR OWN STUDY SECTIONS.
IT'S ALSO A GOOD CHANCE FOR ME
TO THANK EVERYBODY ELSE THAT
SERVED ON PEER REVIEW.
PART OF OUR JOB AS PROGRAM IS TO
LISTEN TO THE REVIEWS AND I'VE
ALWAYS BEEN VERY IMPRESSED ABOUT
HOW MUCH WORK PEOPLE PUT IN TO
THEIR REVIEWS AND HOW THE NIH
PEER REVIEW SYSTEM, PEOPLE
REALLY TRY TO BE HONEST AND FAIR
AND OPEN, AND IT'S REALLY WHAT
DRIVES NIH.
SO I APPRECIATE ALL YOUR
EFFORTS.
>> THE INTEGRITY AND THE PASSION
OF REVIEWERS IS SUCH A BIG PART
OF IT, AND WILL NOT BE LEECHED
OUT BY EXTERNAL FORCES.
>> SO JUST BEFORE WE TRANSITION
TO THE SCIENTIFIC TALK, A COUPLE
OF COMMERCIALS.
ONE, WE HEARD ABOUT THE TOWN
HALL ON THE DISABILITY
YESTERDAY.
THAT IS HAPPENING THIS AFTERNOON
AT 2:30.
THERE'S ALSO A TOWN HALL ON
MINORITY HEALTH AND HEALTH
DISPARITIES THAT IS HAPPENING
TOMORROW AT 1:00, AND THEY'VE
ACTUALLY REACHED OUT INDIRECTLY
TO ME, THEY WANT MORE INPUT ON
REHABILITATION FROM THIS.
SO I WILL BE TUNING IN TOMORROW.
I HAVE THE LINK, SO IF YOU'RE
INTERESTED, I WILL GO AHEAD AND
SEND IT OUT TO YOU.
IN THAT CASE, WELL-KNOWN TO US,
PEPE?
>> THANK YOU.
THANK YOU FOR THE OPPORTUNITY TO
SHARE SOME OF OUR WORK WITH YOU
AND VERY THANKFUL FOR ANY
FEEDBACK YOU CAN PROVIDE.
SO THIS STORY IS ABOUT
BRAIN-COMPUTER INTERFACES, IN
TERMS OF RESTORES FUNCTION TO
SENSORY MOTOR COMMUNICATION.
BUT ALSO REACHES THE IMAGINATION
OF THE PUBLIC, AND IT'S REALLY
IMPORTANT THAT WE UNDERSTAND,
YOU KNOW, THE FIELD WELL.
AND SO JUST A DISCLAIMER, JUST
FOR SUPPORT OF THE WORK.
SO I HAVE DIVIDED MY TALK INTO
THREE PARTS.
THERE ARE A DIFFERENT TYPE OF
BRAIN-COMPUTER INTERFACES.
THE FIRST ONE IS AN ASSESSMENT
OF THE GLOBAL STATE OF CLINICAL
TRIALS IN IMPLANTABLE
BRAIN-COMPUTER INTERFACES.
THE SECOND ONE IS OUR OWN EFFORT
IN DEVELOPING THESE TYPE OF
SYSTEMS IN A NONINVASIVE MANNER,
PARTICULARLY FOR
NEUROREHABILITATION AFTER
STROKE.
AND THE THIRD ONE IS AN
APPLICATION IN A DIFFERENT
FIELD.
AN APPLICATION OF THIS
TECHNOLOGY TO UNDERSTAND THE
BRAIN, ALSO OUR INTERACTION WITH
EACH OTHER.
THE END GOAL IS TO ANSWER THIS
QUESTION, HOW THE HUMANITIES AND
THE -- SO LET ME START WITH THE
FIRST PART, WHICH IS THIS REVIEW
RECENTLY PUBLISHED.
I'D LIKE TO ACKNOWLEDGE MY
FORMER -- K. MICHELLE
PATRICK-KRUGERRAND IAN BURKEHART
WHO WAS INIMPLANTED FOR ONE OF
THESE SYSTEMS.
SO IT WAS IMPORTANT TO HAVE HIS
PERSPECTIVE AND CONTRIBUTION IN
THIS REVIEW AND WITHOUT HIM, WE
COULDN'T HAVE DONE THIS.
SO THIS IS A DEFINITION OF
BRAIN-COMPUTER INTERFACE I LIKE
VERY MUCH BECAUSE BY WOLPAW BACK
IN 1991.
HE DEFINES A BRAIN-COMPUTER
INTERFACE AS ADDITIONAL
COMMUNICATION CHANNEL OF THE
BRAIN USING NON-NORMAL OUTPUT
PATHWAYS.
IT SORT OF PREDICTS WHERE THIS
IS GOING.
WHEN YOU TALK ABOUT
COMMUNICATION CHANNELS, BECAUSE
NOW WE ARE A SOCIETY THAT IS
CONNECTED, IOT, INTERNET OF
THINGS, AT THE CLINIC, YOU KNOW
IT'S VERY EASY TO SEE HOW BCI
PLUS IOT COULD READ TO A
REVOLUTION OF HOW WE INTERACT
WITH THE ENVIRONMENT AND OUR
SURROUNDINGS.
AND THIS COULD START TALKING
ABOUT AUGMENTATION AS WELL.
SEEING IT IN THAT CONTEXT.
MORE ON THAT.
SO THIS IS TO MY KNOWLEDGE THE
FIRST BRAIN-COMPUTER INTERFACE
ARCHITECTURE BACK IN 1973 AT
UCLA BY PROFESSOR VIDAL.
AS YOU CAN SEE THE EXPERIMENT
ROOM WITH THE PARTICIPANT IN
THIS CASE WEARING AN EEG CAP,
NONINVASIVE TECHNIQUE, AND THEN
YOU HAVE THE CONTROL ROOM WHERE
ALL THE -- IS HAPPENING, AND
THEN THE COMPUTER AREA HANDLING
OF THE DATA PROCESSING.
SO IT COULD TAKE A WHOLE ROOM
BACK IN THOSE DAYS.
NOW IT'S CHEAP.
SO AGAIN, DIRECT BRAIN TO
COMPUTER -- NOW WE'RE FOCUSING
ON IMPLANTED BRAIN-COMPUTER
INTERFACES, IBCIs FOR SHORT,
TRANSLATE BRAIN ACTIVITY
RECORDED INTRACRANIALLY INTO
COMMANDS FOR VIRTUAL OR PHYSICAL
MACHINES TO RESPHOR OR
REHABILITATE MOTOR, SENSORY OR
SPEECH FUNCTIONS, WHICH IS THE
DEFINITION WE TOOK HERE, WHICH
BY THE WAY IS DIFFERENT FROM THE
DEAF NATION THE FDA HAS MOVED
FORWARD.
CURRENTLY THERE ARE NO
IMPLANTABLE BRAIN-COMPUTER
INTERFACES THAT HAVE BEEN
APPROVED ANYWHERE FOR MEDICAL
USE, FOR THE MEDICAL DEVICE
MARKET, DESPITE BEING IN
CLINICAL TRIALS SINCE 1998.
YOU MAY KNOW THAT THE ONLY BCI
THAT HAS BEEN APPROVED BY THE
FDA IS ACTUALLY AN EEG-BASED --
A FEW YEARS AGO, BUT NO
IMPLANTABLE ONES.
PEOPLE ARE WORKING VERY HARD
WITH THAT.
SO IN THIS REVIEW, THIS IS A
TYPE OF BCI ARCHITECTURE THAT
I'M GOING TO BE TALKING ABOUT,
AND FROM 1998 TO THE END OF
DECEMBER 2023, WE IDENTIFIED
FOUR DIFFERENT TYPES OF
ELECTRODES OR IBCIs.
THE MICRO ELECTRODE ARRAY ON THE
FIGURE ON THE LEFT, SO THAT'S A
NEUROPORT MANUFACTURED BY
BLACKROCK NEUROTECH AND THEN WE
HAVE THE NEUROTROPHIC CONE
DEVELOPED BY GEORGIA TECH THAT'S
NO LONGER IN USE.
THE -- MANUFACTURED BY SEVERAL
COMPANIES AND THE MOST RECENT IN
THE VASCULAR ARRAY BY SYNCRON.
SHE VARY -- ONE OR TWO
ELECTRODES, MICRO ELECTRODE
ARRAYS, YOU CAN HAVE MULTIPLE OF
THESE IMPLANTED.
MANY ELECTRODES AND THE -- 16 SO
THERE'S VARIATION IN TERMS OF
THE FORM FACTOR, THE DENSITY.
SOMETHING IMPORTANT TO SAY IS
THAT THE ENDOVASCULAR ARRAY IS A
PERMANENT IMPLANT.
THERE'S NO PLAN TO EXPLANT THAT.
SO THAT'S PERMANENT.
SO YOU REPORT BRAIN ACTIVITY
FROM ANY OF THESE ELECTRODES AND
THROUGH ANALOG TO -- CONVERSION,
A COMPUTER BRAIN FOR
PREPROCESSING AND DECODING,
LEADING TO MULTIPLE COMMANDS
THAT CAN BE USED FOR
COMMUNICATION OR MOTOR CONTROL.
THESE ARE SOME EXAMPLES OF THE
DEVICE THAT YOU CAN CONTROL.
A SPEECH SYNTHESIZER, COMPUTER
APP, A GAME, ASSISTIVE ROBOT,
EVEN FUNCTIONAL ELECTRICAL
STIMULATION AND OUR COLLEAGUE
IAN IS HERE USING THAT TO
CONTROL FES FOR GRASPING.
RESTORATION OF GRASPING.
CERTAINLY MORE RECENTLY, INPUT
BCIs SEND FEEDBACK FROM A --
OR AN EFFECTOR CAN BE PROCESSED
FOR MICRO STIMULATION IN CORTEX
TO PRODUCE -- TO EVOKE A SENSORY
PERCEPT.
SO WE HAVE AN OUTPUT BCI AND AN
INPUT BCI HERE, THE SYSTEM WE'RE
TALKING ABOUT TODAY.
SO AGAIN, I WILL EMPHASIZE HERE,
THE FOCUS ON COMMUNICATION,
SENSORY AND MOTOR CONTROL.
AND THE PARTICIPANT THAT WORE
PARWEREPART OF THIS CLINICAL TRH
PARTICIPANTS AFFECTED WITH
SPINAL CORD INJURY, ALS OR
STROKE.
NOW WE ALL KNOW THESE SYSTEMS
ARE SHOWING CLINICALLY VIABLE
RESULTS AND YESTERDAY PRESENTED
SOME OF THE MOST RECENT WORK SO
THERE'S A LOT OF EXCITEMENT.
JUST TO GIVE YOU A FEW EXAMPLES,
THIS IS FROM EPFL LAST MAY,
WHERE THEY DEMONSTRATE
RESTORATION OF WALKING IN A
PARTICIPANT WITH SPINAL CORD
INJURY.
I MEAN, AMAZING.
AND THEN WE HAD -- FOR THE BRAIN
GATE, PROBABLY ONE OF THE
LONGEST OPERATING IBCI GROUPS AT
STANFORD, THEY DEMONSTRATED A
SPEECH BCI ACHIEVING 64 WORDS
PER MEANT WITH LESS THAN 5%
ERROR.
TET, WE HAVE UCSF DR. CHANG'S
LAB ALSO MAKING GREAT PROGRESS
ON THESE TYPE OF SYSTEMS, AND
ACHIEVING 79 WORDS PER MINUTE
WITH LESS THAN 25% ERROR.
NOW, YOU CAN SEE THAT THE PRIOR
OUT COMEOUTCOME WAS LESS THAN 2S
PER MINUTE.
THIS IS A BIG ADVANCEMENT.
BUT WE HAVE THE TYPICAL RATE FOR
ENGLISH IS BETWEEN 120 AND 160
WORDS PER MINUTE.
SO WE HAVE SOME ROOM, BUT WE'RE
GETTING CLOSER TO THAT.
SO THIS IS REALLY A GAME CHANGER
FOR PEOPLE THAT HAVE LOST
FUNCTION, LIKE ALS, YOU KNOW,
AND CANNOT COMMUNICATE WITH
THEIR FRIENDS, FAMILY,
RELATIVES.
NOW, THIS ALSO, YOU KNOW, A LOT
OF INVESTMENT FROM THE PUBLIC --
FROM THE PRIVATE INDUSTRY.
SO EVERYBODY KNOWS NEURALINK. --
TO MAKE A LOT OF PROGRESS EVEN
THIS YEAR, AND THEY'RE REALLY --
THE PLAN IS TO HAVE BCI THAT IS
FULLY IMPLANTABLE, COSMETICALLY
INVISIBLE AND DESIGNED TO LET
YOU CONTROL A COMPUTER OR MOBILE
DEVICE ANYWHERE YOU GO.
SO REMEMBER BCI PLUS IOT, SO
THIS CONNECTIVITY PUSHING THIS
FORWARD.
NOW, WE ALSO HAVE ANOTHER MAJOR
PLAYER, BLACKROCK NEUROTECH,
$200 MILLION INVESTMENT, AND
JUST A RECENT REPORT BY MORGAN
STANLEY, THEY ARE PREDICTING
$400 BILLION MARKET FOR BCI.
CONSIDER THAT JUST IN THE U.S.
ALONE.
RIGHT?
NOW, WITH ALL THAT, WITH ALL
THESE ADVANCES, AND GIVEN THAT
SOME PLAYERS MAINLY USE SOCIAL
MEDIA TO REPORT.
IT'S VERY IMPORTANT THAT
DISSEMINATION OF THE INFORMATION
IS DONE, SO THE PUBLIC CAN
UNDERSTAND REALLY WHAT THE STATE
OF THIS TECHNOLOGY IS.
BUT ALSO IT IS VERY IMPORTANT TO
HAVE A GLOBAL UNDERSTANDING TO
IDENTIFY CHALLENGES, BARRIERS
AND OPPORTUNITIES TO IMPROVE
THIS TECHNOLOGY SO THAT WE CAN
MAKE THEM AVAILABLE TO THE END
USER SOONER.
SO THOSE WERE SOME OF THE
REASONS THAT LED US TO EMBARK ON
THIS REVIEW.
AND THIS IS A PRISMA CHART FOR
SYSTEMATIC REVIEW, AND OF COURSE
WE HAVE CRITERIA I MENTIONED FOR
CHRONIC BCIs LAST YEAR, AND OF
COURSE WE USE BASIS AVAILABLE,
PUBMED, CLINICAL TR CLINICALTRI,
WE CONSTRUCTED ONE SITES, PRESS
RELEASES, WE CHECK PI GOOGLE
SCHOLAR, BECAUSE WE FOUND THAT
FROM THE PUBLICATION, FROM THE
DATA THAT WE GOT FROM
PUBLICATIONS, THERE WAS A
MISMATCH WITH WHAT WAS BEING
ANNOUNCED ON SOCIAL MEDIA ON THE
TV.
SO WE COULDN'T FIND THOSE
PARTICIPANTS THERE.
SO WE USED A NON-TRADITIONAL
APPROACH AND MY COLLABORATOR IAN
WAS INSTRUMENTAL BECAUSE HE
KNOWS PEOPLE THAT HAVE BEEN
IMPLANTED, AND WE WENT TO
CONFERENCES, WE'D LOOK AT SOCIAL
MEDIA PRESS RELEASES.
BUT WHAT WE DID TOO IS, ONCE WE
GOT THE DATA, WE WENT BACK TO
EACH OF THE GROUPS AND TOLD
THEM, HEY, THIS IS THE
INFORMATION WE HAVE IN CLINICAL
TRIALS, WOULD YOU MIND CHECKING
FOR ACCURACY?
WOULD YOU CORRECT ANY MISTAKES,
WOULD YOU MAKE SURE THAT THIS IS
THE FACT, BECAUSE WE WANT TO
SHARE THIS, AND THERE'S NO WAY
AT PRESENT THE GROUP COULD
VERIFY THAT BUT THE P.I.
THEMSELVES.
AND SO THIS WAS IMPORTANT
BECAUSE 25% OF THE PARTICIPANTS,
YOU CANNOT FIND IN THE
LITERATURE.
25%.
SO WE WERE ABLE TO IDENTIFY 67
PARTICIPANTS IN OUR REVIEW.
AND NOBODY KNEW THAT.
NOW, THIS IS A VISUAL SUMMARY OF
THE DATA, OR SOME OF IT.
PLEASE.
>> SO A PARTICIPANT IS A PERSON
WITH AN IMPLANT OR --
>> A PARTICIPANT IS A PERSON
WITH AN IMPLANT, YEAH.
SO THE FIRST COLUMN ARE THE IBCI
GROUPS AND THERE ARE 21 OF THEM.
21 GROUPS WORLDWIDE THROUGH
DECEMBER 2023 HAVE IMPLANTED A
PARTICIPANT.
AND THE SECOND COLUMN IS THE
NUMBER OF PARTICIPANTS, I'M NOT
GOING TO READ THIS, BUT BRAIN
GATE IS LEADING THAT WITH 16
PARTICIPANTS.
I WANT TO COMMEND BRAINGATE
BECAUSE THEY ARE ONE OF THE
GROUPS THAT REALLY ARE
FORTHCOMING IN TERMS WITH
SHARING DATA, EVEN REPORTING
ADVERSE EVENTS AND REALLY MAKING
THE DATA AVAILABLE TO OTHERS.
SO I NEED TO -- I'D LIKE TO
COMMEND THEM, PARTICULARLY
DR. OCCBAR FOR THAT.
THE NEXT ONE IS A COMPANY THAT
CAME TO THE MARKET IN 2019 WITH
10 PARTICIPANTS HERE.
AND THAT'S OTHER GROUPS BUT
THERE ARE 21 OF THEM.
NOW WE ALSO HAVE THE TYPE OF
ELECTRODE, I TOLD YOU THERE ARE
FOUR, AND THEN THE TYPE OF BCI
THAT THEY ARE WORKING ON.
SOME GROUPS ARE FOCUSING JUST ON
THE MOTOR BCI.
NOW EACH ROLE IN THIS GRID IS A
PARTICIPANT.
SO WE HAVE THE SEX AND THE AGE.
WHAT'S IMPORTANT HERE ARE THESE
BARS THAT ARE COLOR-CODED.
SO AT THE BEGINNING OF THE BAR
REPRESENTS THE IMPLEMENTATION
MONTHS AND YEAR, AND WE HAVE THE
YEAR HERE.
I HAVE TO DIVIDE THIS INTO TWO
GRAPHS BECAUSE IT'S TOO LONG TO
FEED VERTICALLY.
NOW, THE END OF THE BAR IS THE
COMPLETION OF THE CLINICAL
TRIAL.
THIS WAS VERY HARD TO GET.
IT'S NOT ALWAYS THIS INFORMATION
IS SHARED.
YOU CAN SEE THE LONGEST IMPLANT
IS 13 YEARS FROM USING THE
NEUROTROPHIC ELECTRODE, GEORGIA
TECH IS NO LONGER OPERATIONAL,
AND THEN THERE ARE NINE SOME ARE
JUST TOO YOUNG TO KNOW.
NOW, YOU CAN SEE FROM THE DEEP
COLOR OF THE BAR, THE CLINICAL
GROUP.
SO WE HAVE 43% HAVE SPINAL CORD
INJURY.
30% MOTOR NEURON DEGENERATION.
17% STROKE.
AND 10% WE DON'T KNOW BECAUSE
THE DATA WASN'T SHARED WITH US.
>> PEPE, JUST TO CLARIFY, ARE
YOU SAYING AT THE END OF THE
EXPERIMENT OR IT'S THE END OF
THE LIFETIME OF THE IMPLANT?
>> THE END OF -- YEAH, THAT'S AN
EXCELLENT QUESTION BECAUSE WL
THE QUESTION -- LONGEVITY OF THE
IMPLANT BUT SOMETIMES THE
INFORMATION IS NOT POSSIBLE.
SO THIS IS THE BEST INFORMATION
WE HAVE.
THE END OF THE PARTICIPATION OF
THE PARTICIPANT ON THE CLINICAL
TRIAL.
SO YOU SEE THE SPINAL CORD
INJURY IS 43%.
NEXT THE ENDOVASCULAR 15%,,
NEUROTROPHIC 6%.
>> JUST TO CLARIFY, YOU SAID ONE
OF YOUR COLLABORATORS --
>> CO-AUTHORS.
>> CO-AUTHORS HAD AN IMPLANT AND
THEN HE REMOVED IT OR --
>> IT WAS REMOVED BECAUSE AN
INFECTION.
>> GOT IT.
>> AFTER 7 1/2 YEARS OR SO.
>> HE WAS DOCTOR OKAY.
-- OKAY.AND IS HE PART OF --
>> HE'S THERE.
AND THE OTHER INFORMATION HERE
IS I DIVIDED THIS INTO AN EARLY
ERA HERE TO 2014 AND THEN A
BRAIN AREA AND THIS BRAIN AREA
COINCIDES WITH THE BRAIN
INITIATIVE INVESTMENT, AND ALSO
THE HUMAN BRAIN PROJECT IN
EUROPE.
YOU CAN SEE THAT THAT INVESTMENT
DIRECTLY OR INDIRECTLY LED TO AN
EXPLOSION IN THE NUMBER OF, YOU
KNOW, CLINICAL TRIALS, 28 OF
THEM, AND ALSO THE NUMBER OF
PARTICIPANTS AND COMPANIES.
SO I THINK THAT WAS A GOOD OUT
COME OF THAT INVESTMENT, RIGHT?
NOW, FROM ALL OF THIS, I TOLD
YOU THAT WE SOLICITED
CONFIRMATION, WE HAVE TWO GROUPS
THAT DID NOT CONFIRM IN FRANCE
AND THE COMPANY AND WE HOPE THAT
THEY -- THE DATA SOON.
SO SOME INFORMATION ABOUT THE
PARTICIPANT DATA WE MIGHT FIND
INTERESTING.
SO THE NUMBER OF YEARS BETWEEN
IMPLANTATION AND THE FIRST
MENTION OF THE PARTICIPANT AND
THE DATA IN A PUBLICATION IS AN
AVERAGE OF THREE YEARS, BUT IT
CAN TAKE MORE THAN FIVE YEARS.
SO THERE'S A LONG DELAY BETWEEN
THE IMPLANT AND THE FIRST TIME
YOU SEE THAT REPORTED IN A
PUBLICATION.
IT'S NOT VERY GOOD FOR SCIENCE.
NOW YOU LOOK AT THE PARTICIPANTS
INCLUDED IN THE MOST
PUBLICATIONS, RIGHT?
BRAINGATE, THEY ACCOUNT FOR
ABOUT 80 PUBLICATIONS OUT OF
165.
AND YOU CAN SEE THE PARTICIPANTS
THAT HAS PROVIDED DATA IN THE
MOST PUBLICATIONS IS FROM
BRAINGATE WITH 22 PUBLICATIONS.
THAT MEANS THAT THERE ARE 57
PARTICIPANTS THAT HAVE
CONTRIBUTED LESS THAN
7 PUBLICATIONS OR EVEN NONE,
RIGHT?
SO ONLY A VERY SMALL GROUP OF
DATA AND OUTCOMES ARE BEING
SHARED.
NOT NECESSARILY, YOU KNOW, DUE
TO THE GROUP, BUT -- BECAUSE
THESE THINGS TAKE TIME, BUT WE
WOULD EXPECT THE DATA TO BE OR
AT LEAST THESE RESOURCES TO BE
SHARED.
SO NOW LET ME SUMMARIZE SOME OF
THE KEY POINTS HERE.
SO WE HAVE 21 GROUPS WORLDWIDE
AS OF DECEMBER.
28 CLINICAL TRIALS WITH 67
PARTICIPANTS, 31 OF THEM ARE
CURRENTLY ACTIVE, PROVIDING
DATA.
FOUR TYPES OF ELECTRODES AND 16S
OVER 25 YEARS.
THE MEAN PARTICIPATION LONGEVITY
IS ABOUT 40 MONTHS FOR PATIENTS
CURRENTLY ACTIVE, RIGHT?
NOT TOO LONG.
YOU NEED A LIFELONG SOLUTION.
40 MONTHS IS NOT A LIFELONG
SOLUTION.
BUT IT'S INCREASING.
HOWEVER, THE CONSISTENCY AND
PERFORMANCE OF THESE DEVICES
VARIES ACROSS WIDELY.
SO WE SEE GREAT ADVANCES OF A
PARTICIPANT, BUT YOU KNOW,
THERE'S 67.
IT'S A QUESTION OF HOW WE CAN
IMPROVE THE RELIABILITY OF THIS
SYSTEM AND THE LONGEVITY OF THE
ELECTRODES.
THERE ARE MANY THINGS WE STILL
DON'T KNOW.
THE TIMELINE FROM IMPLANTATION
TO THE FIRST PUBLICATION IS
THREE YEARS.
IS THERE A QUESTION?
>> THIS IS FRANCISCO.
JUST A QUICK QUESTION.
SO YOU'RE SAYING THAT OF THE 28
CLINICAL TRIALS, THERE'S 67
PARTICIPANTS, SO ROUGHLY LIKE
TWO PARTICIPANTS PER TRIAL?
>> SOME CLINICAL TRIALS HAD
CERTAINLY MORE THAN THAT.
BRAINGATE HAS 16 PARTICIPANTS,
FOR EXAMPLE.
>> YEAH, BUT ON AVERAGE, ON
AVERAGE.
>> YEAH, YOU CAN DO THAT MATH.
>> MM-HMM.
THANK YOU.
>> RIGHT.
YEAH.
I MEAN, THESE ARE VERY COMPLEX
AND EXPENSIVE STUDIES.
>> QUESTION.
DO THEY EVER REPORT THE SAME
PATIENT TWICE IN A SECOND -- WE
SEE THIS FROM TIME TO TIME.
SO DOES JOHN SMITH GET REPORTED
IN ONE PUBLICATION AND THEN AS
PART OF ANOTHER COHORT AN IN A
SECOND PUBLICATION?
>> SO YOU SEE PARTICIPANT
S3 FROM BRAINGATE, HE APPEARS IN
22 PUBLICATIONS.
YEAH.
I MEAN, YOU KNOW, SOME OF THESE
ARE -- SEVEN, EIGHT, NINE YEARS
BY NOW.
THEY ARE REPORTING DATA IN
DIFFERENT THINGS.
ONE IMPORTANT ASPECT OF DATA
THAT I WISH WE HAD MORE
INFORMATION IS SIGNAL
DEGRADATION, THAT'S A BUNCH OF
TIME, RIGHT?
BUT WE DON'T GET -- RIGHT?
SO WE HAD TO TAKE THE LONGEVITY,
YOU KNOW, THE IMPLANT AS A PROXY
FOR THAT.
>> PEPE, KATHLEEN HAS AN ONLINE
QUESTION.
>> YES, PLEASE.
>> HI.
I HAVE TWO QUICK QUESTIONS.
THIS IS REALLY VERY INTERESTING.
I'M CURIOUS, IS THERE ANY MOVE
TO MAKE A DATABASE OR SOME WAY
TO COMBINE THIS INFORMATION
TO --
>> GREAT QUESTION.
GIVE ME A FEW MINUTES AND I'LL
ANSWER IT.
>> OKAY.
AND THEN MY OTHER QUESTION IS,
SO THIS IS REALLY FOR PEOPLE WHO
HAVE SPECIFIC KINDS OF LESIONS?
I GUESS I'M THINKING IN KIND OF
MY MS PART OF MY BRAIN IS
THINKING, COULD YOU SEE THIS OR
FORESEE THIS BEING POSSIBLE FOR
PEOPLE WHO HAVE CONDITIONS LIKE
MS WHERE THE LESIONS EVOLVE BUT
ALSO SOME OF THEM DO STAY
PERMANENTLY?
>> GREAT QUESTION.
I THINK BCI IN -- COULD BE A
SOLUTION, BUT WE ARE REPORTING
HERE ON SEI, MOTOR NEURON,
STROKE.
>> I KNOW IT'S EARLY DAYS BUT
JUST TRYING TO THINK THROUGH
WHAT THAT MIGHT MEAN FOR
PEOPLE --
>> I WILL COMMENT ON THAT LATER.
SO ONE OF THE FINDS IS THAT
WOMEN ARE UNDERREPRESENTED IN
THESE CLINICAL TRIALS.
EVEN WHEN YOU ACCOUNT FOR
DIFFERENCES IN DISEASE OR -- INY
BASED PREVALENCE.
SO ON THE LEFT YOU CAN SEE THAT
73% OF THE PARTICIPANTS ARE
MALES AND ONLY 16% ARE FEMALES.
THERE ARE SEVEN THAT WE DON'T
KNOW, THIS WAS NOT SHARED WITH
US.
SO EVEN WHEN YOU ACCOUNT FOR
THE -- YOU CAN SEE THERE'S ONLY
ONE IN HERE, ONE WOMAN WITH SEI,
A FEW WITH ALS, MORE FEMALES
WITH STROKE.
NOW, YOU CAN SEE THE AGE RANGE
BETWEEN 22 AND 45.
THERE ARE 26 MEN AND ONLY
1 WOMAN, RIGHT?
WHICH FOLLOWS HISTORIC TRENDS OF
WOMEN IN REPRODUCTIVE YEARS HAVE
BEEN EXCLUDED FROM CLINICAL
TRIALS.
WHY?
WELL, BEFORE I TRY TO ANSWER
THAT, AT LEAST PARTIALLY, YOU
KNOW, ANOTHER OBSERVATION THAT
IF THEY ARE RECRUITED, THEY ARE
RECRUITED LATER IN LIFE.
SO THE MEAN IMPLANTATION AGE FOR
MEN IS 44, AND FOR WOMEN, IT'S
52 YEARS.
WHEN THEY'RE RECRUITED, THEY
COME LATER.
SO WHAT ARE THE POTENTIAL CAUSES
FOR THAT?
LET'S START WITH THE REGULATORY
ONES.
SO THE FDA GUIDANCE ON IMPLANTED
BRAIN-COMPUTER INTERFACES, WHICH
WAS UPDATED RECENTLY IN 2021,
RECOMMENDS THE EXCLUSION OF
THOSE WHO ARE PREGNANT OR OF
CHILD-BEARING POTENTIAL AND NOT
USING CONTRACEPTION.
YOU KNOW, YOU'RE A P.I., YOU'RE
GOING TO TAKE THAT
RECOMMENDATION MOST LIKELY.
NOW THAT DOESN'T MEAN THAT THE
FDA IS NOT THINKING ABOUT IT.
THEY HAVE BEEN THINKING ABOUT IT
SINCE 2018.
THERE'S A REPORT, YOU KNOW, IN A
DRAFT DOCUMENT DISCUSSING THE
ACT OF INCLUDING PREGNANT WOMEN
IN CLINICAL TRIALS AND THERE'S A
TASK FORCE BY NICHD ON RESEARCH
SPECIFIC TO PREGNANT WOMEN AND
LACTATING WOMEN.
THAT RECOMMENDED IN 2018
REMOVING REGULATORY BARRIERS TO
RESEARCH IN PREGNANT WOMEN.
SO WE NEED TO DO MORE TO REALLY,
YOU KNOW, IN A RESPONSIBLE
MANNER REMOVE THOSE BARRIERS.
>> JUST REAL QUICK, NICHD IS
HUGE IN PRGLAC.
THAT IS A MAJOR PART OF OUR WORK
AND OUR COLLEAGUES IN OTHER
BRANCHES OF DER.
>> AND THERE'S A REPORT OUT
THERE THAT -- YEAH.
NOW, IT COULD BE ALSO THAT WOMEN
ARE MORE RISK AVERSIVE.
PARTICULARLY CARDIAC -- REVIEW
THEIR PARTICIPATION.
ANOTHER POSSIBLE CAUSE THAT WE
CAN SEE IS THAT WOMEN ARE MORE
PRONE TO PARTNER ABANDONMENT
AFTER A SERIOUS ILLNESS.
WITH WOMEN BEING LEFT
PARTNERLESS SIX TIMES MORE OFTEN
THAN MEN.
AND WE ALSO KNOW THAT
PARTNERLESS WOMEN HAVE REDUCED
PARTICIPATION IN CLINICAL
TRIALS, SO THAT MAY ALSO EXPLAIN
SOME OF THESE.
NOW YOU CONSIDER THE LEVEL OF
COMMITMENT OF PARTICIPANTS,
RIGHT?
IT'S TALKING ABOUT THREE TO FOUR
TIMES A WEEK, AT LEAST SEVERAL
HOURS, YOU NEED TO GET THERE,
YOU NEED TO GO BACK HOME.
AND SO IT'S A FULL-TIME JOB
BASICALLY.
WHEN YOU DON'T HAVE SUPPORT AT
HOME, EVEN IF YOU ARE PROVIDING
A FACILITY TO PARTICIPATE IN A
CLINICAL TRIAL, THAT NO ONE WILL
MAKE IT.
SO WE NEED TO PROVIDE BROAD
SUPPORT FOR THE PARTICIPANTS,
PARTICULARLY FOR WOMEN, THAT
GOES BEYOND JUST THE CLINICAL
TRIAL.
>> WHEN YOU'RE CONSIDERING THE
SEX DISPARITIES, YOU'RE
CONTROLLING FOR THE INCIDENCE OF
LIKE UNDER 30 SPINAL CORD
INJURIES --
>> YEAH, YEAH, THAT WAS THE -- I
SHOWED BEFORE.
NOW, LET'S TALK ABOUT DATA
SHARING BECAUSE THAT'S A REALLY
IMPORTANT ONE.
SO AS OF DECEMBER, THERE ARE
ABOUT 2380 MONTHS OF DATA THAT
HAVE BEEN COLLECTED.
BRAINGATE HAS ACCRUED 21% OF THE
TOTAL, RIGHT?
SOME PARTICIPANTS, YEARS OF
DATA, RIGHT?
OF COURSE WE NEED TO BE
CONCERNED WITH THE PRIVACY AND
THE POTENTIAL MISUSE OF THE
DATA, RIGHT?
WHICH CAN LIMIT, COULD BE ONE
EXPLANATION FOR LIMITING DATA
SHARING.
BUT WHAT WE FOUND IS THAT ONLY
39% OF THESE PUBLICATIONS
REPORTING ON PARTICIPANT DATA
INCLUDED DATA SHARING STATEMENT,
AND ONLY ONE-THIRD OF THEM
ACTUALLY HAD LINKS TO GET ACCESS
TO THE DATA.
NOW, HAVING A DATA SHARING
STATEMENT DOESN'T MEAN THAT THE
DATA WILL BE SHARED.
ACTUALLY, I TRIED TO GAIN ACCESS
TO -- I CONTACTED ONE OF THE
GROUPS TO GET ACCESS TO DATA FOR
RESEARCH, AND I OFFERED TO SIGN
THE AGREEMENT AND COMPLY WITH
THE REGULATIONS AND I WAS
DECLINED.
SO SOMEBODY WORKING WITH BCI --
GET ACCESS TO DATA, I THINK IT'S
A LOST OPPORTUNITY FOR THIS.
NOW, YOU KNOW, I NEED TO
REITERATE THAT DATA SHARING --
THERE ARE PRIVACY
CONSIDERATIONS, THERE ARE A
LIMITED NUMBER OF
PARTICIPANTS -- NORMALLY ON TV
OR IN THE COVER.
AND MOST OF THEM, I THINK THEY
ARE FORTHCOMING.
THEY WANT TO HELP SCIENCE.
THEY ARE PARTICIPATING BECAUSE
THEY WANT TO HELP OTHER PEOPLE.
SO WE NEED TO TAKE THAT INTO
ACCOUNT.
AND OF COURSE ONE PROBLEM WITH
THIS IS THAT WE DON'T KNOW WHAT
WOULD BE THE POTENTIAL IMPACT ON
DISCLOSING THEIR IDENTITY AND
DATA CLINICAL ASSESSMENT IN
TERMS OF HEALTH INSURANCE --
GUIDELINES TO AVOID PUTTING THEM
IN JEOPARDY IN TERMS OF HEALTH
INSURANCE.
NOW ONE QUESTION -- SO AGAIN,
WHAT FUNDAMENTAL QUESTIONS WE
COULD ASK TODAY, RIGHT, IF WE
HAD AN ANSWER, IF WE HAD SK TESS
TO THESE DATA FROM THE 67
PARTICIPANTS?
SO WHICH IT IMPROVED THE MACHINE
LEARNING OR A.I. ALGORITHMS FOR
SURE.
WE CAN TRY DIFFERENT TECHNIQUES
THAT ARE NOT POSSIBLE WHEN YOU
DON'T HAVE ENOUGH DATA.
67 IS NOT A LOT OF DATA BUT
STILL.
WE COULD UNDERSTAND BETTER AND
IMPROVE THE ELECTRODE AND SIGNAL
LONGEVITY, IMPROVE RELIABILITY
OF THESE SYSTEMS, UNDERSTAND THE
VARIANCE.
CERTAINLY BENCHMARKING AND
STANDARDIZATION EFFORTS ARE
NEEDED HERE.
THESE ARE JUST SOME.
I PREF REFER YOU TO THE PUBLICAN
TO READ A LIST OF THINGS.
WE NEED TO ALSO BE CONCERNED
WITH DATA MASKING AND OTHER
FORMS OF ANONYMIZATION OF
DE-IDENTIFYING THE DATA BUT WHO
PAYS FOR IT?
WE CAN PUT A DATA MANAGEMENT
PLAN IN THE GRANT BUT IT ONLY
GOES SO FAR.
AGAIN, WE HAVE 21 GROUPS DOING
THEIR OWN THING IN MOST CASES.
HOW WE HARMONIZE THESE ASSETS?
CONSIDER FROM THESE 67
PARTICIPANTS, 165 PUBLICATIONS,
FOR TOTAL REPORTED DATA, WE
FOUND MORE THAN 100 METRICS OF
PERFORMANCE.
100.
THERE IS NO HUB TO REALLY
COMPARE OR MAKE SENSE OF THAT.
WE NEED METRICS, WE NEED
STANDARDS.
NOW, WE DON'T THINK ABOUT THIS
BUT WHAT'S THE COST OF JUST
RETAINING DATA, RIGHT?
SO IF THE DATA IS CONSIDERED
PART OF A PATIENT'S MEDICAL
RECORD, STATE LAWS REQUIRE FIVE
TO 10 YEAR RETENTION POST
TREATMENT.
BUT A HIGH-DENSITY IBCI RECORDED
THREE TIMES A WEEK FOR, YOU
KNOW, HOURS, IT CAN MEAN ABOUT
400 GIGABYTES PER DAY WHICH
WOULD ADD HUNDREDS OF DOLLARS A
MONTH FOR THE COST OF COMPLYING
WITH THE HIPAA, YOU KNOW, DATA
MANAGEMENT.
THAT DOESN'T INCLUDE ALL THE
COSTS OF THE SERVERS, THE COST
OF THE ELECTRICITY AND ALL THAT.
NOW THE CURRENT SYSTEMS ARE
LIMITED TO A FEW PATIENTS WHO
LIVE NEAR RESEARCH FACILITIES.
IAN, MY COLLABORATOR, CO-AUTHOR,
WAS LUCKY, HE WAS NEARBY, AND HE
KNEW A PHYSICIAN WHO WAS -- WITH
THE TECHNOLOGY.
SO HE WAS ABLE TO ENROLL, BUT
FOR MANY THAT'S NOT POSSIBLE.
NOW, ANOTHER VERY IMPORTANT
CHALLENGE IS LACK OF ACCESS
AFTER THE END OF THE CLINICAL
TRIAL.
SO IT COULD BE REGULATORY ISSUES
THERE OR CHALLENGES, IRB, IDE.
I MEAN, WE COULD RENEW IRB, WE
COULD PROBABLY PROLONG IDEs
BUT IT'S STILL SOMETHING TO
CONSIDER.
WE NEED TO MAINTAIN THE FUNCTION
AND THE CLINICAL SUPPORT FOR THE
PARTICIPANTS.
AND IN A HOLISTIC MANNER.
WE NEED TO PROVIDE SYSTEM
MAINTENANCE AND REPAIR SO EVEN
REPLACE THE SYSTEM.
NOW THESE SYSTEMS, HERE WE HAVE
FOUR MAIN DIFFERENT ONES.
INTEROPERABILITY WOULD NOT WORK.
EVEN CONNECTION INVENTORIES, WE
HAVE TO DEAL WITH JUST
CONNECTORS SO THAT WE CAN
REPLACE.
SO THIS REALLY LACK OF ENOUGH
GRANT AND PRIVATE FUNDING,
ALTHOUGH THERE ARE INVESTMENTS
BUT WE'RE TALKING ABOUT END OF
CLINICAL TRIAL.
MAYBE THE TEAM IS NOT AVAILABLE,
MAYBE THE P.I. RELOCATES AND
THAT HAS HAPPENED.
IT HAPPENED TO IAN, THE P.I.
MOVED TO A DIFFERENT UNIVERSITY
SO WHAT DO YOU DO?
OR THE GRANT ENDS, WHAT DO YOU
DO?
COULD BE RELOCATION, I MENTIONED
THAT, OF THE PATIENT OR THE
P.I., AND THERE ARE ALSO LEGAL
AND OTHER CONSIDERATIONS.
SO THERE ARE MANY CHALLENGES
HERE THAT WE NEED TO BE
CONCERNED ABOUT.
WHAT IF THE COMPANY GOES OUT OF
BUSINESS?
AGAIN I'M RAISING THE ISSUE OF
INTEROPERABILITY BECAUSE YOU
CANNOT REPLACE SYSTEMS AND THAT
HAS HAPPENED, AND THERE ARE ALSO
SOME CLEAR EFFORTS BY SOME IN
THE COMMUNITY TO TAKE CARE OF
THE PARTICIPANT ONCE THE COMPANY
IS OUT.
SO THAT'S SOMETHING THAT
REQUIRES FUNDING TO KEEP
SUPPORT.
AND WE NEED SOME NEWS ABOUT AN
EFFORT, WHAT TO DO AFTER THE END
OF THE CLINICAL TRIAL, RIGHT,
THAT JUST CAME OUT YESTERDAY.
, I
BELIEVE, FROM HARVARD.
YEAH.
>> I'LL JUST SAY, I'M JUST GOING
TO -- THIS IS PRESCIENT.
WHEN GIRON WAS IMPLANTING STEM
CELLS AND THE FDA REQUIRED WAS
IT A 10 OR 20-YEAR FOLLOW-UP
PERIOD, AND THEN THE COMPANY
BOTTOMED OUT AND THE PATIENTS
HAVE CELLS IN THEIR BRAIN.
WHO'S GOING TO PLAY WITH THAT?
EVERYONE IS DOING THEIR BEST.
BUT THE RESOURCES WERE NOT
THERE.
THAT'S HOW CAPITALISM WORKS, I'M
TOLD.
>> YEAH.
I MEAN, ONE THOUGHT IS THAT --
>> IT'S PRESCIENT.
>> ONE THOUGHT IS THAT EVERY
TIME A COMPANY OR PROVIDERRER OF
A SYSTEM -- COST IS ALLOCATING A
FUND THAT WILL BE USED LATER ON.
>> [INAUDIBLE]
>> SO IT'S A HUGE PROBLEM THAT
NEEDS A LOT OF THOUGHT AND
COORDINATION.
I MENTIONED THIS A BIT YESTERDAY
BUT WITH THE USE OF BCI IOT, THE
LINE BETWEEN A DEVICE OR
THERAPEUTIC PURPOSE VERSUS AN
ENHANCEMENT GETS BLURRED.
RIGHT?
AND YOU KNOW, THERE'S SOME
CONVERSATION IN THE LITERATURE
AND THIS IS ONE OF THEM, AND
THIS IS IN QUOTES, THIS IS NOT
MINE, IF YOU HAVE A PERSON THAT
DOES NOT DARE TO -- THE IBC WILL
BE AB ENHANCEMENT.
HOW YOU COMPARE THE REGULATION
IS SAFETY VERSUS BENEFIT,
EFFICACY.
BUT THEN HOW DO WE CONSIDER THE
EFFECT ON SOCIETY?
SO THE GOOD OF THE SYSTEM BEYOND
THE PARTICIPANT.
SO WE REALLY NEED STANDARDS FOR
DATA COLLECTION -- THERE WAS
JUST A RECENT FDA MEETING ON
DEVELOPING CLINICAL OUTCOMES
ASSESSMENTS.
CERTAINLY WE NEED TO STANDARDIZE
ENGINEERING METRICS SO THAT WE
CAN COMPARE AND ALSO PATIENTS'
METRICS.
AT THE MEETING, THERE WAS A
PROPOSAL FOR A UTILITY INDEX
WHERE THAT WILL MEASURE THE
USER'S ADOPTION OF THE
TECHNOLOGY.
AND SO ON AND SO FORTH.
STANDARDS FACILITATE DATA
SHARING AND BENCHMARKING.
YES, MICHELLE?
>> JUST HAD A QUICK QUESTION.
ARE THE 67 PARTICIPANTS REQUIRED
TO KEEP DIARIES KIND OF LIKE A
RECORD, KIND OF ALMOST LIKE WHAT
THE EXPERIENCE IS LIKE?
>> WELL, I'M SURE I WILL EXPECT
THEM TO TAKE NOTES OR, YOU KNOW,
DOCUMENT OR -- AND WE NEED MORE
OF THAT.
IAN WROTE ABOUT HIS EXPERIENCE,
WITH THE BCI PIONEERS, THEY
SHARE MORE FOR THE PEOPLE.
OTHER PEOPLE.
SO YEAH, WE NEED A REGISTRY.
WE HAVE A LOT OF DATA, AND WE
ARE COLLECTING THROUGH THIS
YEAR, SO WE ARE UPDATING THIS.
SOMEBODY NEEDS TO DO IT.
BUT, YOU KNOW, WE'RE TRYING TO
FIGURE OUT WHAT'S THE BEST WAY
TO DEVELOP SUCH REGISTRY AND
MAINTAIN IT.
WHEN SOMETHING THAT CAN
CONTINUE, THAT YOU KNOW, WILL BE
GOOD TO TRACK NOT ONLY THE
PARTICIPANTS, THE PERFORMANCE
DATA, ADVERSE EVENTS BUT ALSO
THE RESEARCH GROUPS.
THERE ARE NOT MANY.
WE NEED TO DO MORE WORK FOR
DEVELOPMENT, WE NEED TO DO
TRAINING, WE NEED TO DEVELOP THE
EXPERTS, THE ENGINEERS, THE
PEOPLE THAT WILL PRESCRIBE,
MAINTAIN SYSTEMS.
AGAIN, WHO'S GOING TO PAY FOR
IT?
-- NIH BUT THIS IS REALLY
IMPORTANT.
SO IT WILL ASSIST DEVELOPERS,
REGULATORS, THIRD PARTY PLAYERS
AND END USERS, THERE'S NO
QUESTION ABOUT IT.
SO LET ME JUMP TO MY NEXT TOPIC,
AND I'M HAPPY TO ENTERTAIN OTHER
QUESTIONS.
YEAH, I HAVE 20 MINUTES.
YOU HAVE A QUESTION?
>> TE TECHNOLOGY, THE DECODING
ALGORITHMS, THEY USED TO BE
BASED ON PRETTY FINITE MOVEMENT
OR SPEECH VOCABULARIES.
HAVE THEY GOTTEN TO THE POINT OF
BEING GENERATIVE SO THAT YOU CAN
GENERATE MOVEMENTS OR SPEECH
OUTSIDE OF THE TRAINED STATE
SPACE?
>> WHAT THEY ARE USING NOW, YOU
KNOW, IS MORE USE OF A.I.,
RIGHT, SO IT'S GOING TO BE
MORE --
>> SO THE SPEECH CAN ACTUALLY BE
LIE PHONETICALLY DEVELOPED AS
OPPOSED TO JUST --
>> WELL, YEAH -- ABOUT SPEECH,
BUT AGAIN, A FEW EXAMPLES,
RIGHT?
WE DON'T KNOW THE EVOLUTION WITH
THE PROGRESSION OF DISEASE,
MEDICATION, MANY FACTORS, RIGHT?
SO LET ME GO, SO THIS IS
NONINVASIVE EEG, AND BASICALLY
WE WANTED TO PROVIDE A SOLUTION
THAT WAS NONINVASIVE FOR -- IN
THIS CASE FOR A PERSON WITH
CHRONIC STROKE, SO WE DEVELOPED
AN EEG-BASED BCI, VERY SLOW
BRAIN RHYTHM, AND THE IDEA WAS
TO DETECT -- AND ONCE DETECTED
IT WILL CONTROL A ROBOTIC DEVICE
TO PROVIDE ASSISTANCE NEEDED TO
THE UPPER LIMB.
AFTER THE INTERVENTION, WE WERE
MEASURING THE BENEFIT POST
INTERVENTION, TWO WEEKS AND A
MONTH LATER.
THIS IS WORK FROM MY FORMER --
NIKUNJ BHAGAT, IT WAS A
COLLABORATION WITH MY COLLEAGUE
DR. FRANCISCO, PMR, AND MARCIO
MALI WHO WAS RESPONSIBLE FOR THE
ROW BO AT THIS TIME PART SO
AGAIN TEAM SCIENCE HERE.
SO BASICALLY WE HAVE A CLINICAL
TRIAL WHERE WE ASSESS THE
PARTICIPANTS TWICE, 30 DAYS
APART TO MAKE SURE THERE WAS NO
SPONTANEOUS RECOVERY THAT WILL
CONFOUND OUR RESULTS.
THOSE THAT DID NOT SHOW ANY
DIFFERENCE MORE THAN THREE
POINTS PROCEEDED TO THE BCI
CALIBRATION OF THE INTERFACE,
AND THEN THEY DID THERAPY OVER A
MONTH OR THREE TIMES A WEEK,
THEN WE HAVE ASSESSMENT.
THE TASK WAS -- THAT WAS
CONTROLLED THROUGH THE BCI, AND
YOU CAN SEE HERE THE ROBOT FOR
THE ARM, 64 -- EEG.
WE ALSO WERE RECORDING EMG TO
LOOK AT THE EEG-RELATIONSHIP.
SO THIS IS A SMALL COHORT OF 10
PARTICIPANTS WITH CHRONIC
STROKE.
YOU CAN SEE THE DIFFERENT SCORES
HERE.
THE ACTUAL RESEARCH ARM TEST, WE
HAVE TO SCREEN UP TO A HUNDRED
TO GET TO THIS TIME, IT TOOK A
LONG TIME, BUT THESE ARE THE
OUTCOMES.
YOU CAN SEE HERE THAT THERE WAS
A SIGNIFICANT CHANGE FROM
BASELINE, POST TWO WEEKS, THEN
IT WAS RETAINED TWO MONTHS AFTER
FOR BOTH METRICS, AND WE
ACTUALLY -- PARTICIPANT MUST
THEN REACH THE CLINICALLY
IMPORTANT DIFFERENCE, IN THIS
CASE 5.7.
AND IF YOU LOOK AT THE AMPLITUDE
OF THE CHANGE IN THE MOVEMENT
RELATED CORTICAL POTENTIAL WITH
THE ARAT SCORE, WE SEE THEY ARE
LINEARLY RELATED SO THE
IMPROVEMENT WAS RELATED TO THIS
CHANGE IN THE AMPLITUDE, SO WE
OBSERVED CHANGES IN THE EEG,
WHICH WE ATTRIBUTED TO
NEUROPLASTICITY.
NOW FOR THE HIGHLIGHTS, SO WE
HAVE THESE MOTOR INTENTION BASE
ARM TRAINING TARGETS ACTIVITY
DEPENDENT NEUROPLASTICITY
LEADING TO IMPROVEMENT.
WE OBSERVED IPSI-LESIONAL DELTA
BAND EEG ACTIVITY THAT WAS
HIGHLY CORRELATED WITH MOTOR
RECOVERY, AND RESULTS SUGGEST
HIGHER ACTIVATION OF ISILESION
AL -- SO WE WERE VERY EXCITED
ABOUT THIS.
IT WAS VERY EX-P EXPENSIVE EQUI,
WE REALIZE IF WE WANT TO
TRANSLATE THIS TO THE END USER,
WE NEED TO ADDRESS THIS ISSUE.
IT WAS -- I WENT TO NSF AND SAID
THESE ARE THE DIFFERENT
FACTORS -- FORM FACTOR --
INTEROPERABILITY AND ALSO
CONSIDER THE CONNECTIVITY WITH
IOT SO THAT CAN SPEAK TO
DIFFERENT HARDWARE.
SO I AM NOT BOUNDED BY A
SPECIFIC DEVICE.
AND TO KEEP TOLD THE STORY HERE,
THIS IS THE DEVICE, THE CLINICAL
TRIAL FUNDED BY NIH, WE LEARNED
WE ONLY NEEDED FIVE ELECTRODES
TO ACCOMPLISH THIS, SO WE HAD
FIVE ELECTRODES TO THIS AREA
HERE, WND HAVE FOUR ELECTRODES
MONITORING EYE TRACKING, EYE
MOVEMENTS.
WE HAVE MACHINE LEARNING
EMBEDDED, WE HAVE IOT EMBEDDED
AND WE HAVE THE ADAPTIVE
NOISE-CANCELING TO GET RID OF
ARTIFACTS.
THIS IS DONE IN THE LAB BY
STUDENTS, IT'S REELIN EXPENSIVE.
THE ROBOT IS THE EXPENSIVE PART,
IT WAS ONE OF OUR INDUSTRIAL
PARTNERS, AND THIS IS A
CONVERGENCE OF BCI PLUS IOT --
IS GOING TO BE HERE SOON.
WE HAVE A COUPLE OF -- FOR THIS
WORK.
SO WE TRY THIS AGAIN,
DR. FRANCISCO, AGAIN BASELINE,
CONSENT FORM, THE ASSESSMENTS,
IF THEY QUALIFY, THEN THEY ARE
TRAINED TO USE A DEVICE ON THEIR
OWN, IF THEY HAD TO USE -- THEY
DIVIDE, THEY GOT HOME AND DO 60
SESSIONS AND THEN WE TEST TWICE
AFTER THAT.
SO THIS IS MOVING THE DEVICE
FROM THE CLINIC TO THE HOME.
THIS IS AN EXAMPLE OF THESE
MRCPs RECORDED WITH -- WE WERE
LIMITED TO FIVE PEOPLE WITH
CORONARY STROKE BECAUSE THIS IS
NSF GRANT AND WE COULDN'T DO
MORE THAN THAT, BUT THE EMPHASIS
WAS THE USABILITY BEING ABLE TOO
DO THIS OUTSIDE THE LAB.
JUST TO GIVE AN IDEA OF THE
LESSONS LEARNED, RIGHT, SO THESE
ARE SOME OF THE DEMOGRAPHICS OF
OUR PARTICIPANTS.
I WANT TO NOTE THAT ONE WAS IN
CALIFORNIA, ONE WAS IN MARYLAND.
SO THEY LEARNED ABOUT THE TRIAL
AND THEY CAME TO HOUSTON TO BE
PART OF THE TRIAL AT THEIR OWN
EXPENSE, AND THEN WE SENT THEM
THE DEVICE, AND USING ZOOM AND
PHONE CALLS, WE KEPT IN TOUCH.
WE LEARNED THAT, YOU KNOW,
SOMETIMES THE ROBOTIC ARM WOULD
NOT PAIR WITH THE DEVICE, THAT
HAPPENED IN THREE PERSONS.
SO WE HAD TO UPGRADE THE
FRAMEWORK FOR THE ROBOT.
WE HAVE ONE PARTICIPANT THAT
COULDN'T REALLY CONNECT THE
DEVICE TO THE CHARGER SO WE HAD
TO REPLACE THAT WITH A USB-C
PORT.
AND WE HAVE AN ISSUE WITH THE
BATTERY SO WE HAD TO REDESIGN
THE BATTERY.
THERE WAS A PROBLEM WITH THE
SERVER, THE INTERFACE WAS
WEB-BASED, YOU CAN ACCESS THAT
THROUGH ANY IPHONE OR SMARTPHONE
OR TABLET, WE HAD TO DOO TO DO N
OF THE SOFTWARE.
EVEN THOUGH WE TRAINED THEM TO
100 DEVICES, WE LEARNED THAT
ONCE THEY'RE AT HOME THEY DON'T
REALLY PAY ATTENTION TO THAT TOO
MUCH AND WE HAD TO REIMPORT THE
DEVICE IN DIFFERENT PLACES BASED
ON THE FEEDBACK.
SO I THINK WE HAVE A SYSTEM NOW
THAT HAS BEEN DESIGNED WITH THE
USER IN MIND WITH THEIR FEEDBACK
AND WE ARE AT THE POINT WHERE WE
ARE READY TO DO THAT CLINICAL
TRIAL, TALK TO THE FDA ABOUT
WHAT IS GOING TO BE NEEDED FOR
THAT.
SO IN THE LAST 10 MINUTES, I'M
GOING TO JUMP TO A NEW
APPLICATION TWHE THAT I'M REALLY
PASSIONATE ABOUT.
USING APPLICATION OF THIS
TECHNOLOGY TO UNDERSTAND THE
SOCIAL BRAIN, WHEN YOU ARE
RECORDING FOR MORE THAN ONE
BRAIN AT TA TIME.
I FOUND YOU HUMANITIES ARE A
REALLY BEAUTIFUL AND PRODUCTIVE
WINDOW TO STUDY SOCIAL
INTERACTION.
FOR DIFFERENT REASONS.
ONE IS THAT THEY ARE HIGHLY
SKILLED, SO I DON'T NEED TO
WORRY ABOUT CAN THEY CONTROL
THEIR BODY, DO THEY HAVE GOOD
KINETIC SENSE, THEY NEED TO
LEARN THE MUSIC, THEY NEED TO
LEARN THE CORE CHOREOGRAPHY SON
LOOK AT THE CORRECTIVE PROCESS,
THE SEQUENCE LEARNING AND CAN
LOOK AT HOW NOT ONLY THEIR
MOVEMENTS ARE SYNCHRONIZED BUT
THEIR BRAIN ACTIVITY ARE
SYNCHRONIZED.
I ALSO LEARNED THAT BY WORKING
WITH PROFESSIONALS, THESE
PERFORMANCES ARE CONDUCTED IN
THEATERS OR PERFORMED IN VENUES,
IT NEEDS TO WORK.
AND SOMETIMES WE NEED TO SOLVE A
PROBLEM 10 MINUTES BEFORE THE
CURTAIN GOES UP, AND IT HAS BEEN
GREAT AT PROBLEM SOLVING,
TRAINING FOR MY STUDENTS.
THI ARE MORE OPEN, THEY DON'T
GET STRESSED OUT, THEY ARE MORE
BRAVE TO ADDRESS THOSE
CHALLENGES.
AND THE THIRD ASPECT IS WE ARE
INFORMING THE PUBLIC, TYPICALLY
WE HAVE QAs AT THE END SO WE
CAN TELL THEM ABOUT WHAT BCI IS
AND IS NOT.
WHAT ARE THE ETHICAL ASPECTS,
WHERE WE ARE IN THE TECHNOLOGY,
AND WE PRESENTED THIS RECENTLY
IN HOUSTON ABOUT 1500 KIDS FROM
THEIR SCHOOL AND THEIR TEACHER
SO.
I CAN REACH OUT FROM THE LAB
OR THE CLINIC.
THIS IS ONE OF THE THINGS THAT
WE HAD DONE, LIVEWIRE, IT WAS A
COLLABORATION WITH CORE
CHOREOGRAPHERS ACROSS
DISCIPLINES.
SO THIS IS AN EXAMPLE OF A
PERFORMANCE.
YOU SEE THE TWO DANCERS ARE
INSTRUMENTED, BUT YOU SEE AT THE
BACK OUR REPRESENTATIONS OF
THEIR SKULL MAPS AND -- SO YOU
CAN SEE HOW THEY ARE CONNECTED,
THE BRAIN.
WE ARE RECORDING THE DATA SO WE
CAN GO BACK TO THE LAB AND
ANALYZE, THIS IS WHAT WE CAN DO
WITH THIS PARTICULAR PERFORM MER
WHO WANTED TO SHOW THE ARTISTIC
AND SCIENTIFIC -- IN A WAY THAT
WOULD BE ACCESSIBLE FOR
PARTICIPANTS.
YEAH, ALL OF THIS IN REALTIME.
SO THE KIND OF QUESTION THAT
WE'RE INTERESTED IN IN
UNDERSTANDING THE CREATIVE
PROCESS, THIS IS SOMETHING
REALLY I FOUND MY COLLABORATORS
TO BE REALLY INTERESTED.
AND THEY ARE LEARNING A LOT
ABOUT NEUROSCIENCE, NOW THEY ARE
DOING TED TALKS TALKING ABOUT
THE NEUROSCIENCE OF DANCE.
BEFORE THEY WERE JUST DANCERS,
PROFESSIONAL, NOW THEY'RE A
FIELD THAT THEY ARE LEARNING AND
VICE VERSA, RIGHT?
HOW DIFFERENT LANGUAGE I HAD TO
LEARN TOO.
DO YOU HAVE A QUESTION?
>> DO YOU THINK YOU COULD CREATE
A ROBOT MAKING THE SAME
MOVEMENTS BASED ON THE
RECORDINGS?
>> GREAT QUESTION.
THAT WAS A QUESTION IN PART
RESPONSIVE FOR GOING TO DANCE,
BECAUSE I DO EXPERIMENT WITH
LOWER LIMB, EXOSKELETONS BUT
THEY'RE VERY -- AND WE
COMMUNICATE AS WELL THROUGH
MOVEMENT.
WE CAN RECORD THIS EXPRESSIVE
MOVEMENT SO WITH THE MOST RECENT
EXOSKELETON THAT HAS MULTIPLE --
OF FREEDOM WE COULD START OUT
COMMUNICATING WITH, YOU KNOW,
OUR MENTAL STATE OR EMOTIONS
THROUGH MOVEMENT.
SO HOPEFULLY MAYBE IN THE
FUTURE.
>> AS USUAL I'M GOING TO SOUND
LIKE -- BUT TO DIFFERENTIATE
BETWEEN THE SYNCHRONIZATION OF
THE ACTIVITIES THAT ARE SIMPLY
RELATED TO SYNCHRONOUS STIMULI,
AND THE CREATIVE PROCESS AND THE
ESTHETIC PROCESS, WOULDN'T YOU
NEED A CONTROL THAT HAS THE SAME
TYPE OF STIMULI BUT NON-CREATIVE
AND NON- --
>> LET ME -- YEAH, LET ME ANSWER
THAT, AND WE HAVE CONTROLS FOR
DIFFERENT THINGS, OF COURSE.
BUT I THINK ONE IMPORTANT POINT,
THIS IS UNCONSTRAINED REALISTIC
AND - ECOLOGICAL SETTINGS.
SO THIS IS -- SO IN THIS CASE
THEY HAVE EEG SENSORS, THEY HAVE
MOTION SENSORS TO TRACK THEIR
HEAD, ALL SYNCHRONIZED IN
REALTIME USING -- SO ACCURACY IS
VERY IMPORTANT HERE.
THERE IS A QUALITY CHECK,
PRECALIBRATION, IN THIS CASE --
EYES CLOSED.
BUT YOU CAN SEE AT THE BOTTOM,
SO THESE ARE DESIGNED AND THE
MUSIC BY MY COLLEAGUES BASED ON
A CONVERSATION ABOUT
NEUROSCIENCE.
SO WE WENT TO -- THEY'RE
MIMICKING OR WORKING DIFFERENT
THINGS, SO WE WANT TO LOOK AT
THE NEURAL SYSTEM THEN THEY --
LOOK AT EACH OTHER OR TOUCH SO
WE TRY TO BUILD THIS IN A
NATURAL WAY IN THE CHOREA GRO C.
SO THIS TAKES MONTHS.
SUMMER 2021, WE DISCOVER -- EEG
DANCERS TO UNDERSTAND WHAT IS
THE BEST WAY TO -- THE SIGNAL
QUALITY AND THEN AT SOME POINT
WE STARTED RECORDING THESE
REHEARSALS, SO WE SEE HERE WE
RECORDED TWICE, THREE TIMES,
THREE TIMES HERE, THEN WE HAVE
PERFORMANCES.
SO IN THIS PARTICULAR EXAMPLE,
WE HAVE SEVEN REHEARSALS AND
THREE PERFORMANCES.
SO YOU CAN LOOK ON EEG HOW THE
NETWORK IS CHANGING AND THE
MUSIC TO THE MOMENT THAT THEY
ARE PERFORMING.
SO THIS IS JUST -- BEFORE AND
AFTER, WE CAN REMOVE ARTIFACTS
OF DIFFERENT KINDS, AND THIS IS
PUBLISHED -- IF YOU'RE
INTERESTED.
THIS IS JUST AN EXAMPLE, I DON'T
HAVE TOO MUCH TIME HERE.
SO TO ONE QUESTION IS, THESE
DANCERS HAVE BEEN WORKING
TOGETHER FOR SEVERAL MONTHS,
LEARNING THE CHOREOGRAPHY AND
THE MUSIC, THEY ARE DEVELOPING
THEIR INTERNAL -- EACH OTHER.
IT BECOMES AUTOMATED.
IN FACT IF THEY'RE THINKING
ABOUT THE CHOREOGRAPHY, THEY
WILL MOST LIKELY FAIL.
SO JUST LIKE A SEQUENCE RUNNING.
SO I THOUGHT THEY ARE LEARNING
EACH OTHER'S INTERNAL MODELS,
YOU KNOW, THEY SHOULD SHARE SOME
NEUROSUBSTRATES, RIGHT?
AND SO AFTER CLEANING USING
THE -- ANALYSIS AND -- MRI
TEMPLATE, WE IDENTIFIED THESE
SOURCES OR THAT WERE SHARED
ACROSS BOTH DANCERS.
YOU CAN SEE SMA, WHICH INVOLVES
SEQUENCE LEARNING AND
PRODUCTION, WHICH YOU WOULD
EXPECT THE -- AREA 7, SOME
COGNITIVE AREAS, BUT THOSE ARE
UNIQUE TO THE DANCER.
NOW, THIS IS THE AVERAGE IN THE
BRAIN SYNCHRONY DURING A
PERFORMANCE, YOU CAN SEE HOW
THAT'S CHANGING BASED ON WHAT
THEY ARE DOING HERE.
AT SOME POINT THEY TOUCH EACH
OTHER AND IT GOES UP, SO WE CAN
TRACK THIS, WE HAVE VIDEO SO WE
CAN SEE HOW THE BEHAVIOR RELATES
TO THE BRAIN SYNCHRONIZATION.
WE CAN ALSO DO FUNCTIONAL
CONNECTIVITY BRAIN TO BRAIN.
SO THE WOMAN WAS THE LEAD
DANCER.
OKAY, AND UNFORTUNATELY YOU
CANNOT SEE WELL THE PATTERN, BUT
WHEN WE LOOK AT HOW THESE AREAS
TALK TO EACH OTHER, REMEMBER
THESE ARE THE SHARED AREAS OF
THE TWO DANCERS I SHOWED YOU
BEFORE.
SO AREA AREA 31 TALKS TO AREA
7 OR THE OTHER DANCER TO AREA 6.
WE SEE A STRONGER PATTERN OF
CONNECTIVITY FROM THE LEAD TO
THE SECOND DANCER AND WEAKER
FROM THE SECOND DANCER TO THE
LEAD.
SO WE HAVE INFORMATION, ALL OF
THIS IS SYNCHRONIZED.
THERE'S GOING TO BE SINK NATION
DUE TO DIFFERENT FACTORS.
SO THERE'S GOING TO BE
SYNCHRONIZATION BECAUSE THEY ARE
MOVING TOGETHER, BECAUSE THEY'RE
TOUCHING.
AND ALSO BECAUSE IT'S -- SO
THERE IS INPUT HERE, CERTAINLY
FROM VISUAL AREA AND AUDITORY
AREA BUT THESE ARE THE AREAS
THAT ARE SHARED.
>> BUT THE ENTRAINMENT, THAT'S
THE QUESTION I WAS ASKING
BEFORE.
YOU'RE ENTRAINING BRAIN ACTIVITY
BY THE AUDITORY STIMULATION AND
BY THE MOVEMENT REQUIREMENT.
SO YOU COULD GET THIS SAME THING
IF -- WHAT I'M ASKING ABOUT
CONTROL, WHAT IF YOU EITHER USE
NON-ESTHETIC OR NON-, YOU KNOW,
ARTISTIC STIMULI AND WOULD YOU
GET THE SAME THING, OR WHAT IF
YOU TOTALLY SEPARATED THEM AND
USED THE SAME SYNCHRONOUS
SIGNALS AND REQUIREMENTS FOR
DANCE, WOULD YOU END UP WITH THE
SAME -- I MEAN, THE BRAIN,
THEY'RE NOT TALKING TO EACH
OTHER, THEY'RING IF THROUGH THEE
SENSES PERIPHERALLY AND THEN
STIMULATING.
>> I THINK THAT, AGAIN, THEY ARE
LEARNING THIS INTERNAL MODEL.
OF COURSE THE SENSORY INPUT IS
TRIGGERING, RIGHT?
>> YES.
>> BUT -- AND THAT'S --
>> I UNDERSTAND WHAT YOU'RE
SAYING.
IT'S ALSO PREDICTIVE, THEY'RE
DOING A MODEL OF THE THING.
OKAY.
SO IT DOESN'T REALLY MATTER IF
YOU SEPARATED THEM AND THEN YOU
REQUIRED THE SAME THING.
, IT
WOULDN'T MATTER BECAUSE YOU'D
GET THE SAME ENTRAINMENT.
>> WE HAD DONE A STUDY WITH A
JAZZ MUSICIAN IN WHICH THEY
IMPROVISE AND WE CAN PREDICT
WHEN THE BRAIN ACTIVITY -- I
DON'T HAVE THAT DATA HERE.
THIS IS AN EXCELLENT QUESTION
BUT WE JUST STARTED TO EXPLORE
THIS.
IT TAKES A LONG TIME TO GET
THIS.
SO THIS IS --
[MUSIC]
-- SO YOU KNOW, I THINK ONE WAY
TO PROVE THIS IS TO GET AN MRI,
BUT NOW WE HAVE -- [INAUDIBLE]
>> [INAUDIBLE]
>> WELL, THE ONE ON THE LEFT WAS
THE WOMAN.
I CAN PLAY IT AGAIN.
SO THE WOMAN IS ON THE LEFT, THE
MAN IS ON THE RIGHT.
SO AS THEY ARE MOVING --
>> CAN YOU PLAY IT AGAIN?
>> I CAN TRY.
>> QUESTION.
SO IN ONE -- IN THE PREVIOUS
STUDY WITH THE EEG AND THE ECOG
FOR THE STROKE, YOU FOCUSED ON
THE DELTA BAND.
WHICH SEEMS A LITTLE STRANGE TO
ME BECAUSE I WAS THINKING WOULD
YOU FOCUS ON THE NEW BAND, THE
ALPHA BAND OR THE BETA BAND, BUT
YOU FOCUSED ON THE DELTA SO I
WAS CURIOUS ABOUT THAT.
THEN THIS ONE, YOU'RE FOCUSING
ON THE GAMMA BAND.
CAN YOU EXPLAIN KIND OF LIKE THE
RATIONALE BEHIND SWITCHING
THOSE?
>> SO ON THE OTHER STUDY, WE
HAVE REPORTED BACK TO 2010 THAT
IN TERMS OF EEG, THE BEST
ALGORITHM FOR -- INT DETECTING T
FOR MOVEMENT WAS AMPLITUDE
MODULATION I IN THE -- BAND.
YOU HAVE TO HAVE -- YOU ARE --
WITH MEMORY, SO THE -- IN THE
PICTURE, RIGHT?
AND MANY PAPERS HAVE VALIDATED
THAT AND ACTUALLY PEOPLE WORKING
WITH LOCAL -- POTENTIAL HAVE
THIS -- WHERE YOU -- THEY'RE SO
IN THE HIGHER FREQUENCIES, SO --
NOT ONLY FOR SLEEP BUT ALSO FOR
DETECTING INTENT.
HOWEVER, ON THIS, WE HAVE
COMPUTER EVERYTHING.
I'M JUST SHOWING YOU A LITTLE
PART OF IT.
WE FOUND THAT THE INTERBRAIN
SYNCHRONY WAS -- IT'S STRONGER
IN THE GAMMA BAND WITH EEG.
THAT DOESN'T MEAN THAT IS NOT
HAPPENING IN OTHER BANDS OR
THAT -- YEAH.
SO WE HAVE -- I STARTED WORKING
THE INTERFACE OF THE --
HUMANITIES IN 2014.
THE FIRST STUDY WE DID WAS A --T
THE MENIL COLLECTION WHERE WE
HAD PARTICIPANTS INSTRUMENT AND
GO THROUGH THE GALLERY AND
COLLECT DATA, AND WE PUBLISHED
THIS AND SOME ACTUALLY BY THE
FDA TO LOOK AT SIGNAL
CONSISTENCY AND THINGS LIKE
THAT.
THEY HAVE DEVELOPED A TOOL TO
ASSESS THE QUALITY OF THE
RECORDING.
SO THIS IS HOW I STARTED, NOW I
HAVE -- WE HAD DONE PAINTING,
DRAWING, EVEN CHILDREN, THIS IS
THE -- THAT DOESN'T HAVE ANY
RISK IS THAT YOU CAN ENGAGE
CHILDREN AS THEY DEVELOP ART OR
PLAY MUSIC OR THINGS LIKE THAT.
BUT THIS IS WHERE WE ARE GOING,
RIGHT?
AND THIS IS -- YOU KNOW, A DREAM
RIGHT NOW, BUT SO IF WE COMBINE
MUSIC AND DANCE TO GET REAL
WORLD DATA FROM THE BRAIN,
THROUGH EEG, FROM THE -- YOU CAN
HAVE OTHER -- ONE IS SKIN
RESPONSE, BLOOD PRESSURE AND
THINGS LIKE THAT, AND WHILE
ENGAGING THE PUBLIC,
DISSEMINATING, PROVIDING --
AVENUES FOR THE PUBLIC TO LEARN
ABOUT THIS.
SO THEN YOU USE THE BCI
APPROACH, RIGHT, THE SINGLE
PROCESSING DECODING TO LOOK AT
NEUROMODULATION, FUNCTIONAL
MAPPING AND LEARN HOW MUSIC AND
DANCE AFFECT THE BRAIN, HOW IT
CAN BE DISSECTED IN DIFFERENT
NETWORKS, HOW YOU CAN AFFECT
THOSE NETWORKS THROUGH MUSIC AND
DANCE.
SO THINK ABOUT MUSIC, FOR
EXAMPLE, AS A NEUROSTIMULATOR OR
NEUROMODULATOR.
SO WE KNOW THAT HAS EFFECTS,
EVERYBODY REMEMBERS A SONG THAT
BRINGS EMOTION.
WE KNOW THAT MUSIC CAN TRIGGER
MEMORIES IN PEOPLE WITH
ALZHEIMER'S DISEASE.
IT'S JUST THAT WE DON'T KNOW HOW
TO PERSONALIZE THAT OR HOW TO
PRESCRIBE ART.
SO WHEN YOU COMBINE ALSO A.I.,
MACHINE LEARNING, YOU KNOW,
GOING BACK TO EXPRESSIVE
ROBOTICS, WHERE YOU CAN PROGRAM
THE ASSISTIVE -- TO BE
FUNCTIONAL IN TERMS OF MOBILITY
BUT ALSO TO CAPTURE TO SOME
EXTENT YOUR -- STATE.
IT ALSO VERY IMPORTANT,
BIOMARKERS, AND DIFFERENT
PROGRAMS AT NIH AND THAT'S WHERE
WE ARE ON THAT.
OF COURSE IF WE GET THE
AVAILABLE DATA FROM THE BRAIN AS
YOU ARE ENGAGED IN MUSIC AND
DANCE ACTIVITY, AND YOU ARE ABLE
TO GET DATA TO TRAIN TO MACHINE
LEARNING TO KNOW WHAT MUSIC, YOU
NEED TO USE TO GAIN ACCESS TO A
PARTICULAR PART OF THE BRAIN,
THEN YOU CAN USE THAT MUSIC
LATER ON TO UP OR DOWNREGULATE
ACTIVITY THERE.
>> YOU ARE ALMOST DONE?
>> OH, I'M -- I'M DONE.
THIS IS THE LAST.
THANK YOU.
>> SO THANK YOU FOR TAKING US ON
A FANTASTIC JOURNEY.
I GUESS IF I EVER HEAR YOU SAY
CAN I PICK YOUR BRAIN, I'D
BETTER BE CAREFUL.
[LAUGHTER]
BUT THIS WAS GREAT.
YOU TOOK US IN A LOT OF
DIFFERENT -- AND I APPRECIATE
YOU REVIEWING THE LITERATURE ON
IT AND ALSO RAISING THE ETHICAL
ISSUES ABOUT THIS.
SO THANKS FOR PUTTING IT ALL
TOGETHER.
>> THANK YOU.
[APPLAUSE]
SO WE HAD ON THE SCHEDULE FOR
HAVING THE ELECTION, BUT SINCE
WE ONLY HAD ONE PERSON IN
NOMINATION FROM YESTERDAY, I
GUESS KATHLEEN HAS BECOME OUR
CHAIR STARTING AT THE CONCLUSION
OF OUR MAY MEETING.
SO BARBARA, WE APPRECIATE
BARBARA'S EFFORTS.
BARBARA IS GOING TO BE OUR CHAIR
THROUGH MAY.
KATHLEEN WILL BE OUR CHAIR IN
WAITING, AND WE'RE GOING TO NOW
TAKE A LITTLE LUNCH BREAK, AND
WE'LL RECONVENE AT 12:45.
WE HAVE A VERY INTERESTING
DISCUSSION ON STRATEGIES FOR
DOING COMMUNITY ENGAGED
RESEARCH.
SO I VERY MUCH ENCOURAGE YOU TO
TUNE IN TO THAT.
DOROTHY FARRAR EDWARDS AND JOY
HAMMEL ARE GOING TO BE GIVING
THAT TALK, SO WE'LL TAKE A BREAK
UNTIL 12:45 EASTERN STANDARD
TIME.
THANK YOU.
OKAY.
SO FOR OUR NEXT TALK, I AM
ABSOLUTELY DELIGHTED TO WELCOME
DOROTHY EDWARDS AND JOY HAMMEL.
DOROTHY IS FACULTY CONSULTANT
FOR THE UNIVERSITY OF WISCONSIN,
INSTITUTE FOR CLINICAL AND
TRANSLATIONAL RESEARCH FOR
COMMUNITY COLLABORATION.
SHE'S THE PHYLLIS DISTINGUISHED
ACHIEVEMENT PROFESSOR AND
PROFESSOR OF KINESIOLOGY IN
MEDICINE.
SHE'S THE ASSOCIATE DEAN FOR
RESEARCH FOR THE SCHOOL OF
EDUCATION, EFFECTS OF AGING ON
FUNCTIONAL INDEPENDENCE AND
QUALITY OF LIFE, AND SHE IS A
LONG TIME COLLEAGUE.
JOY HAMMEL IS THE WADE MEYER
ENDOWED CHAIR PROFESSOR DIRECTOR
OF GRADUATE STUDIES IN
DISABILITY AND HUMAN DEVELOPMENT
AND OCCUPATIONAL THERAPY AT
UNIVERSITY OF ILLINOIS-CHICAGO.
AND HER RESEARCH SPECIALTY IS
COMMUNITY-BASED PARTICIPATORY
ACTION RESEARCH AND SHE'S A
FORMER MEMBER OF THIS ADVISORY
BOARD.
SO DOROTHY, JOY, WELCOME.
I'M TURNING IT OVER TO YOU.
>> THANK YOU, BARBARA.
I WANT TO THANK YOU, BARBARA AND
DR. NITKIN FOR THIS INVITATION.
IT'S REALLY A PLEASURE TO BE
ABLE TO PRESENT TO YOUR ADVISORY
COMMITTEE, AND IT'S ACTUALLY A
REALLY DELIGHT TO BE ABLE TO
WORK WITH JOY HAMMEL ON ANY
PROJECT, SO THIS HAS BEEN REALLY
FUN.
THE ONE THING I WANT TO SAY IS
THAT JOY AND I DO VERY DIFFERENT
KINDS OF RESEARCH, BUT THE BASIC
MOTIVATING VALUES AND THEMES ARE
ESSENTIALLY THE SAME.
SO MY WORK IS OFTEN IN
RECRUITMENT FOR A LARGE
LONGITUDAL STUDIES OR CLINICAL
TRIALS, BUT IT STILL HAS A VERY
IMPORTANT ORIGIN IN
COMMUNITY-ENGAGED PROGRAMS AND
PROCESSES, AND JOY DOES
COMMUNITY-BASED PARTICIPATORY
RESEARCH, SO WE'RE GOING TO
SHARE BOTH HER PERSPECTIVES
TODAY, AND HOPEFULLY LOOKING
FORWARD TO A LIVELY DISCUSSION
WITH THE PANEL BECAUSE WE KNOW
YOU'RE HIGHLY INVESTED IN THESE
ISSUES AND TOPICS.
SO JOY, I'M TURNING IT OVER TO
YOU.
>> HELLO, EVERYONE.
AGAIN, MY NAME IS JOY HAMMEL.
IN ADDITION TO BEING A PROFESSOR
AT UIC, I ALSO IDENTIFY AS A
DISABLED WOMAN MYSELF AND A
MEMBER OF THE DISABILITY
COMMUNITY, SO I JUST WANTED TO
SITUATE THAT UP FRONT.
AND I'VE BEEN DOING COMMUNITY
ENGAGED RESEARCH I WITH THE
DISABILITY FOR 35-PLUS YEARS, SO
I'M GOING TO TRY TO JUGGLE A FEW
HATS HERE AS RESEARCHER, OT
HEALTH PROFESSIONAL AND A MEMBER
OF THE DISABILITY COMMUNITY.
AND BEFORE WE GET STARTED, BOTH
DOROTHY AND I WANTED TO
ACKNOWLEDGE AND THANK ALL OF THE
DISABILITY AND AGING COMMUNITY
MEMBERS AND ORGANIZATIONS THAT
HAVE BEEN INVOLVED IN ALL OF THE
DIFFERENT RESEARCH PROJECTS THAT
WE'LL BE SHARING WITH YOU TODAY.
AND ALSO ACKNOWLEDGE THAT THE
RESEARCH HAS BEEN FUNDED BY NIH
AS WELL AS THE NATIONAL
INSTITUTE OF DISABILITY,
INDEPENDENT LIVING AND
REHABILITATION RESEARCH, OR
NIDILRR.
WE'RE TRYING TO GET INTO FOUR
DIFFERENT THINGS IN THIS
PRESENTATION WITH YOU.
FIRST OF ALL, JUST TALKING ABOUT
WHAT COMMUNITY-ENGAGED RESEARCH
IS, AND HOW IT CAN CONTRIBUTE TO
OUTCOMES AND IMPACT.
AND THEN WE WANT TO STRATEGIZE
WITH YOU.
STRATEGIZING HOW TO DEVELOP
STRONG COMMUNITY PARTNERSHIPS,
PARTICULARLY WITH DISABILITY AND
AGING COMMUNITIES, ESPECIALLY
PEOPLE WHO ALSO COME FROM
UNDERREPRESENTED AND
MARGINALIZED COMMUNITIES.
STRATEGIZING WAYS TO MAKE THAT
ENGAGEMENT MORE ACCESSIBLE AND
INCLUSIVE AND PARTICIPATORY, AND
THEN ALSO HOW TO SUSTAIN THOSE
PARTNERSHIPS AND HOW TO GET TO
LONG-TERM SYSTEMS AND POLICY
CHANGES BECAUSE OF THAT ENGAGED
RESEARCH.
SO LET'S START OUT FIRST OF ALL
WITH JUST CENTERING ON WHAT
COMMUNITY ENGAGED RESEARCH IS.
WHAT YOU'RE SEEING HERE IS ONE
OF THE MOST WIDELY USED
DEFINITIONS FOR IT.
THIS IS MORE THAN ACADEMIC
DEFINITION, RIGHT, FROM THE
CENTERS FOR DISEASE CONTROL.
THAT TALKS ABOUT IT INVOLVES
WORKING COLLABORATIVELY WITH AND
THROUGH GROUPS OF PEOPLE.
SO WHEN WE'RE THINKING ABOUT
COMMUNITY HERE, IT CAN LOOK VERY
DIFFERENT, AND THERE'S LOTS OF
DIFFERENT TYPES OF COMMUNITIES.
SO IT MIGHT BE THAT PEOPLE LIVE
IN THE SAME NEIGHBORHOOD OR
GEOGRAPHY, IT MIGHT MEAN THAT
THEY HAVE A SHARED SITUATION OR
ISSUE THAT THEY'RE WORKING ON.
THEY MAY HAVE A SHARED IDENTITY,
AND IT MIGHT EVEN BE VIRTUAL
COMMUNITIES, RIGHT?
SO WITH THIS KIND OF RESEARCH,
WHAT WE REALLY ARE FOCUSING ON,
THOUGH, IS AFFECTING THE HEALTH
AND WELL-BEING OF THESE
COMMUNITIES AS WELL AS AT THE
POPULATION LEVEL.
AND HOPEFULLY THIS KIND OF
RESEARCH IS ALSO A CATALYST THEN
FOR CHANGING POLICIES, PROGRAMS
AND PRACTICES AS WELL AT THAT
POPULATION LEVEL.
BUT ASIDE FROM THE ACADEMIC
DEFINITION, I DO WANT TO FOCUS
IN TO SAY THAT COMMUNITY-ENGAGED
RESEARCH HAS A REALLY RICH
HISTORY AND ROOTS, FROM WITHIN
AND WITH COMMUNITIES.
ON THE LEFT YOU'RE SEEING PAOLO
FRIERE, ONE OF THE GRANDDADDIES
OF PARTICIPATORY RESEARCH OR PAR
RESEARCH IN BRAZIL, PARTICULARLY
WORKING WITH COMMUNITIES THAT
HAVE BEEN MARGINALIZED AND
OPPRESSED SO THAT THEY CAN GAIN
POWER FROM WITHIN.
AND THEN OVER ON THE RIGHT HERE,
YOU'RE SEEING MORE HOW THAT GOT
APPLIED IN WHAT'S CALLED CBPR OR
COMMUNITY-BASED PARTICIPATORY
RESEARCH.
SO APPLIED BY HEALTH RESEARCHERS
ON HOW TO COLLABORATE WITH THAT
COMMUNITY TO DIRECTLY IMPACT
HEALTH OUTCOMES.
WHAT YOU'RE SEEING ON THIS
SLIDE, THOUGH, IS MORE FROM THE
DISABILITY COMMUNITY THAT WE'RE
FOCUSING IN ON SPECIFICALLY
HERE.
TO SHOW YOU THAT THEY, TOO, HAVE
A VERY LONG HISTORY OF
OPPRESSION AND MARGINALIZATION.
NOT ONLY RELATED TO ACCESSING
HEALTHCARE, BUT ALSO IN HOW
THEY'VE BEEN TREATED IN PRIOR
RESEARCH.
SO THERE'S A REASON TO FOCUS IN
ON THIS COMMUNITY AND TO FOCUS
IN ON THAT MANTRA THAT THEY PUT
FORTHRIGHT IN THE MI MIDDLE HER,
THE NOTHING ABOUT US WITHOUT US.
THERE'S OTHER REASONS TO FOCUS
IN UNDER THE DISABILITY
COMMUNITY RIGHT NOW AS WELL.
WHAT YOU'RE SEEING HERE IS AN
INFOGRAPHIC FROM THE CDC.
THAT'S PART OF THEIR DISABILITY
IMPACTS ALL OF US INITIATIVE,
AND SHOWING THAT IN THE UNITED
STATES RIGHT NOW, ADULTS HAVE A
1 IN 4 CHANCE OF HAVING SOME
KIND OF A DISABILITY.
WHICH IS VERY HIGH.
AND YOU CAN SEE UNDERNEATH THAT
THE TYPES OF DIVERSE
DISABILITIES THAT PEOPLE MIGHT
EXPERIENCE.
AND OVER ON THE RIGHT, YOU CAN
SEE THAT PEOPLE WITH
DISABILITIES AS A GROUP
EXPERIENCE SOME VERY SIGNIFICANT
SOCIAL DETERMINANTS OF HEALTH
THAT PREVENT THEM OR MAKE IT
VERY DIFFICULT FOR THEM TO
ACCESS HEALTHCARE AS WELL AS TO
BE INVOLVED IN ANY KIND OF
RESEARCH.
SO IT IMPORTANT TO ACKNOWLEDGE
THIS, AND NOT ONLY THAT, NIH HAS
RECENTLY REALLY ACKNOWLEDGED THE
DISABILITY COMMUNITY IN VERY
SPECIFIC WAYS.
FIRST OF ALL, NIMHD HAS NOW
DECLARED DISABILITY AS ONE OF
THE DISPARITIES GROUPS THAT
EXPERIENCES NATIONAL
DISPARITIES, AS WELL AS WITHIN
NIH NOW, YOU'RE SEEING A
CRITERIA NOW THAT SAYS THAT THEY
WANT YOU TO TALK ABOUT HOW YOU
WILL ENGAGE THIS COMMUNITY, AND
HOW YOU WILL REPRESENT THEIR
LIVED EXPERIENCE.
SO IT'S A GOOD TIME TO CONSIDER
THINKING ABOUT COMMUNITY-ENGAGED
RESEARCH.
SO WHAT DOES IT LOOK LIKE?
I LIKE THIS GRAPHIC FROM
PENICILLIN PENNSTATE AND THEIR .
THEY DO THESE THINGS CALLED THE
CHEER TOOLKIT THAT YOU CAN SEE A
LINK TO ON THE BOTTOM.
REALLY EXCELLENT RESOURCES BOTH
FOR HEALTHCARE RESEARCHERS THAT
WANT TO DO THIS BUT ALSO
VERSIONS OF IT FOR COMMUNITY
MEMBERS THAT WANT TO ENGAGE IN
IT AND I HIGHLY RECOMMEND THESE.
I REALLY LIKE THEIR GRAPHIC HERE
THAT SHOWS YOU THAT THERE'S A
CONTINUUM OF COMMUNITY-ENGAGED
RESEARCH THAT YOU CAN ENGAGE IN.
AND HAVE DIFFERENT LEVELS OF
COMMUNITY ENGAGEMENT.
SO OVER ON THE LEFT SIDE, THESE
ARE MORE WHERE HEALTHCARE
RESEARCHERS ARE STILL LEADING
THE RESEARCH AND MAYBE THEY'RE
BRINGING BACK AND INFORMING AND
CONSULTING WITH THE COMMUNITY.
WHEREAS THE MORE YOU GO TO THE
RIGHT ON THIS GRAPHIC, THE MORE
YOU GET THE COMMUNITY
PARTICIPATING, INITIATING, EVEN
LEADING THAT RESEARCH, AND THE
MORE OPPORTUNITIES YOU GET FOR
COMMUNITY EMPOWERMENT AND
CAPACITY BUILDING, AS WELL AS
FOR LONG TERM SYSTEMS CHANGE.
WE ALSO HAVE A GROWING BODY OF
EVIDENCE ON THE POSITIVE IMPACT
OF COMMUNITY-ENGAGED RESEARCH,
AND I FORWARD YOU OVER TO THIS
REPORT ON THE RIGHT, PRINCIPLES
OF COMMUNITY ENGAGEMENT, DONE BY
THE CTSA NETWORK AND A NUMBER OF
OTHER FEDERAL COLLABORATORS FOR
SOME REALLY EXCELLENT OVERVIEW
OF THE EVIDENCE HERE.
BUT SOME OF THE THINGS THEY
POINT TO IS, WHEN YOU'RE ABLE TO
ENGAGE WITH THE COMMUNITY,
YOU'RE MORE LIKELY TO HAVE
CULTURALLY AND SOCIALLY RELEVANT
STUDY DESIGNS AND DELIVERY
MECHANISMS, AND BECAUSE OF THAT,
THEY'RE MORE LIKELY TO BE USED
BY COMMUNITIES AND TO RESULT IN
MEANINGFUL OUTCOMES, ESPECIALLY
FOR MARGINALIZED COMMUNITIES.
THEY ALSO ARE MORE LIKELY TO
HAVE INCREASED KNOWLEDGE
TRANSLATION AND IMPLEMENTATION
BECAUSE THOSE INTERVENTIONS HAVE
BEEN CO-CREATED TOGETHER.
THEY'RE MORE LIKELY TO LEAD TO
INCREASED COMMUNITY CAPACITY TO
BUILD THEIR POWER FROM WITHIN
THAT COMMUNITY SO THAT THEY CAN
TAKE ACTIONS, AND THEY'RE ALSO
MORE LIKELY TO RESULT IN SYSTEMS
AND POLICY CHANGES THAT CAN
BENEFIT ENTIRE LARGER
COMMUNITIES AND POPULATIONS.
AND SO THE OTHER THING TO THINK
ABOUT, THOUGH, WITH
COMMUNITY-ENGAGED RESEARCH,
PARTICULARLY THE DISABILITY
COMMUNITY WANTS YOU TO THINK OF
THESE THINGS, THESE ARE
IMPORTANT ISSUES OR CHALLENGES
TO YOU IF YOU ARE GOING TO TAKE
ON THIS KIND OF RESEARCH OF
THINGS TO THINK ABOUT AND TO
BUILD INTO YOUR PROJECTS.
SO THE FIRST ONE IS
REPRESENTATION AND DIVERSE
INCLUSION.
A LOT OF TIMES IN THE DISABILITY
COMMUNITY, WE SEE THE ONE TOKEN
DISABLED PERSON ON AN ADVISORY
BOARD, OR THE ONE THAT PEOPLE
CALL ON AGAIN AND AGAIN.
AND THE DISABILITY COMMUNITY
WANTS TO SAY TO YOU, GO BEYOND
THAT.
GET GRASSROOTS REPRESENTATION OF
PEOPLE FROM THE COMMUNITY THAT
REPRESENT DIFFERENT ASPECTS OF
IT.
ALONG WITH THAT, THEN, MAKE SURE
YOU'RE GIVING VOICE TO THE
COMMUNITY.
AND WHEN I TALK ABOUT VOICE,
IT'S NOT JUST MY ABILITY TO
PHYSICALLY SPEAK.
THIS ASK MORE ABOUT DO I HAVE A
FOOT IN THE DOOR, A WHEEL IN THE
DOOR, A SEAT AT THE TABLE, ARE
MY PERSPECTIVES HEARD AND
LISTENED TO?
AND NOT ONLY THAT, BUT ARE THEY
RESPECTED AND RESPONDED TO?
THEY ALSO TALK ABOUT NEEDING TO
HAVE ACCESSIBLE, EQUITABLE AND
MEANINGFUL PARTICIPATION WHICH
WE WILL BE HIGHLIGHTING QUITE A
BIT THROUGHOUT THIS PRESENTATION
AND THEY POINT TO IS THE
RESEARCH RESPONDING TO AND
STRATEGIZING SOCIETAL BARRIERS
THAT THEY'RE FACING ON A DAILY
BASES.
THINGS LIKE STRUCTURAL ABLEISM,
AGEISM, RACISM AND OTHER SOCIAL
DETERMINANTS OF HEALTH THAT MAKE
IT REALLY DIFFICULT FOR THEM TO
PARTICIPATE IN RESEARCH.
THEY ALSO TALK ABOUT IS THE
RESEARCH GIVING THEM POWER,
CONTROL, OWNERSHIP AND
LEADERSHIP OPPORTUNITIES WITHIN
THAT COMMUNITY.
AND THEN FINALLY, THE ONE THAT I
HEAR THE MOST, HOW WILL THIS
MOVE US TO ACTION, ACTION,
ACTION.
IS THE RESEARCH GOING TO BENEFIT
THE COMMUNITY DIRECTLY, HOW WILL
IT BENEFIT, AND HOW CAN THEY USE
THE EVIDENCE FROM IT THAT
THEY'RE DOING TOGETHER TO TAKE
ACTION TO IMPROVE OPPORTUNITIES
FOR THE DISABILITY COMMUNITY.
SO WITH THAT, I'M GOING TO PASS
IT OVER TO DOROTHY TO GET INTO
OUR FIRST SET OF EXAMPLES.
>> THANKS, JOY.
SO I WANTED TO TALK ABOUT
COMMUNITY ENGAGEMENT AND
COMMUNITY ENGAGEMENT RESEARCH
THROUGH THE LENS OF RECRUITMENT
SCIENCE.
SO RECRUITMENT SCIENCE IS A
RELATIVELY NEW TERM FOR THE
THING THAT WE ALL TRY TO DO,
WHICH IS TO ACTUALLY ENGAGE
INDIVIDUALS IN OUR RESEARCH.
SO RESEARCH PARTICIPATION IS A
BEHAVIOR.
I'M A PSYCHOLOGIST AND BEHAVIORS
CAN BE PREDICTABLE.
BUT THE DECISION TO PARTICIPATE
IN A RESEARCH PROGRAM AND
PROJECT DEPENDS ON A NUMBER OF
DIFFERENT FACTORS, AND I WOULD
LIKE TO MAKE THE POINT VERY
CLEARLY THAT RANDOMIZED CONTROL
TRIAL PARTICIPATION INSIDE OF A
HOSPITAL OR OTHER LONG-TERM CARE
REHABILITATION FACILITY BEGINS
IN THE COMMUNITY.
IF PEOPLE IN THE COMMUNITY DON'T
SEE THAT INSTITUTION AS A PLACE
WHERE, A, THEY WANT TO RECEIVE
CARE OR. ABOUT, B, THEY WILLE
EXCELLENT CARE THAT IS ATTENTIVE
AND RESPONSIVE TO THEIR NEEDS,
THE LIKELIHOOD OF RECRUITING A
SAMPLE THAT'S REPRESENTATIVE IS
UNLIKELY.
AND THIS IS AN OLE SLIDE.
OLD SLIDE.
THIS GOES UP TO 2010, BUT I
COULD ACTUALLY -- I USE THIS
BECAUSE I HAD IT.
I COULD RE-CREATE THIS SLIDE
FROM DATA FROM TWO YEARS AGO AND
IT WOULDN'T LOOK ANY DIFFERENT.
SO BASICALLY THE PROBLEM IS, IS
THAT RANDOMIZED CONTROL TRIALS,
WHICH IS OUR STANDARD FOR
EVIDENCE FOR INTERVENTIONS, ARE
SERIOUSLY AND TRAGICALLY
UNDERENROLLED, PARTICULARLY WITH
INDIVIDUALS WITH DISABILITY OR
FROM OTHER UNDERREPRESENTED
GROUPS.
20 TO 40% OF TRIALS CLOSE
WITHOUT EVER REACHING THEIR
ENROLLMENT NUMBERS, AND WE SEE
THAT THE INDIVIDUALS WHO BEAR
THE GREATEST BURDEN OF DISEASE
OR DISABLING CONDITIONS ARE THE
ONES LEAST LIKELY TO BE ENROLLED
IN THE TRIALS, WHICH THEN
QUESTIONS WHAT THE UTILITY OF
THESE TRIALS ARE OTHER THAN
PRODUCING EVIDENCE AND GREAT
PAPERS FOR THOSE OF US WHO DO
THEM.
SO WHAT ARE THE CONSEQUENCES OF
FAILURE TO RECRUIT AND RETAIN
PARTICIPANTS?
I'M NOT TELLING ANY OF YOU
THINGS THAT YOU DON'T KNOW, BUT
I JUST WANT TO BRING THESE
ISSUES TO THE FOREFRONT.
FIRST OF ALL, FROM A
METHODOLOGICAL PERSPECTIVE, THE
TRIALS ARE INCONCLUSIVE OR THEY
HAVE INVALID RESULTS BECAUSE
THEY HAVE REDUCED STATISTICAL
POWER AND WE TEND TO THINK OF
TYPE 1 ERRORS AS MAKING SURE WE
MEET OUR P VALUES BUT THE LIKELY
HOOS OF SAYING SOMETHING IS NOT
SIGNIFICANT AND BENEFICIAL WHEN,
IN FACT, IT MIGHT BE IS REALLY A
PROBLEM.
THE PROTRACTED ACCRUAL, YOU GET
TRIAL FATIGUE SO THAT THE
INDIVIDUALS INVOLVED HAVE
DIMINISHED COMMITMENT, YOU FIND
HIGHER LOSS TO FOLLOW-UP.
THERE'S LOSS OF MOTIVATION FOR
EVERYBODY WHO'S INVOLVED IN THE
TRIAL AND OFTEN TREMENDOUS STAFF
TURNOVER.
AND WHAT HAPPENS IS THAT THE
PEOPLE WHO ARE WORKING THE
HARDEST, I THINK THE HARDEST JOB
FOR THOSE OF US WHO WORK IN
INSTITUTIONAL-BASED RESEARCH ARE
THOSE YOUNG PEOPLE THAT WE HIRE
RIGHT OUT OF COLLEGE TO BE THE
RESEARCH COORDINATORS, THEY'RE
RESPONSIBLE FOR RECRUITMENT.
IT'S PROBABLY THE MOST STRESSFUL
JOB OF ALL BECAUSE THEY'RE
TRYING TO PERSUADE PEOPLE TO DO
SOMETHING THAT THEY DON'T
NECESSARILY WANT OR FEEL THAT
THEY DON'T NEED TO DO.
THERE ARE ALSO SERIOUS ETHICAL
CONCERNS REGARDING EXPOSURE OF
CONSENTED PARTICIPANTS TO STUDY
RISK WITH NO CORRESPONDING
BENEFIT IF THE HYPOTHESES ARE
NOT TESTABLE.
THE OVERALL OUT COME IS A LACK
OF GENERAL RISIBLE RESULTS THAT
THEN FURTHER PERPETUATE
DISPARITIES SO THOSE OF US
REALLY LOOKING AT RECRUITMENT
AND RECRUITMENT STRATEGIES ARE
VERY, VERY CONCERNED ABOUT THIS.
I WANT TO DRAW YOUR ATTENTION TO
THE RIGHT SIDE OF THIS SLIDE.
THIS IS JUST AN EXCELLENT
ARTICLE BY MY COLLEAGUE CONSUELA
WILKINS WHO'S AT VANDERBILT
UNIVERSITY.
SHE ALSO LEADS THE VANDERBILT
MEHARRY ALLIANCE THERE, AND WHAT
CONSUELA HAS WRITTEN ABOUT FOR A
LONG TIME NOW IS THAT SHE ADDS
THAT PIECE TO THE LITERATURE ON
TRUST.
SO WE ALL KNOW OR BELIEVE THAT
TRUST IN INSTITUTIONS OR TRUST
IN INVESTIGATORS IS A PRIME
DETERMINANT OF RESEARCH
PARTICIPATION, BUT THERE'S VERY
LITTLE ATTENTION TO WHAT
ACTUALLY MAKES US TRUSTWORTHY,
AND THE TRUSTWORTHINESS IS THE
PART THAT I THINK IS THE MISSING
ELEMENT IN A LOT OF STUDY
DESIGNS FROM THE
CONCEPTUALIZATION TO THE
EXECUTION.
SO TRUSTWORTHY RESEARCHERS ARE
EASILY REACHED.
THEY'RE NOT, YOU KNOW, PROTECTED
BY THEIR RESEARCH STAFF.
PEOPLE IN THE COMMUNITY WANT TO
SEE THE INVESTIGATORS, THEY WANT
TO BE ABLE TO ASK THE
INVESTIGATOR QUESTIONS.
AND THAT'S FAIR.
WE NEED TO BE APPROACHABLE, YOU
KNOW, THERE ARE NO BAD QUESTIONS
WHEN IT COMES TO RESEARCH
DESIGNS, RESEARCH QUESTIONS S
RESEARCH PARTICIPATION.
WE NEED TO BE GOOD LISTENERS.
YOU KNOW, THE FIRST RULE OF
COMMUNITY ENGAGEMENT IS FIRST
YOU SHOW UP AND YOU ASK
PERMISSION TO SPEAK.
YOU DON'T TAKE -- YOU DON'T
ASSUME THAT THE COMMUNITY THAT
YOU'RE TALKING TO KNOWS LESS
ABOUT THE TOPIC THAN YOU DO,
WHICH IS OFTEN INCORRECT.
YOU HAVE TO BE ABLE TO
UNDERSTAND THE PERSPECTIVES OF
OTHERS.
SO WHEN SOMEBODY TELLS ME, YOU
KNOW, DR. EDWARDS, I REALLY LIKE
YOU BUT I WOULD NEVER DO YOUR
STUDY, YOU HAVE TO SAY, WELL,
HELP ME UNDERSTAND WHY.
I REALLY NEED TO UNDERSTAND
THIS.
I REALLY APPRECIATE YOU TAKING
THE TIME TO TELL ME.
YOU HAVE TO BE HONEST, TRUTHFUL
AND.
OPEN.
YOU HAVE TO BE WILLING TO SAY I
KNOW MY INSTITUTION IS A
COLOSSAL PAIN IN THE ASS, I KNOW
IT'S GOING TO TAKE TOO LONG TO
GET YOU PAID, I KNOW THAT
SOMETIMES WE MAKE ASSUMPTIONS
ABOUT YOUR CAPACITY TO DO THINGS
IN THE WAY THAT WE NEED TO DO
THEM AND WE TELL YOU THAT WE
NEED TO DO THEM THIS WAY BECAUSE
WE'RE AN ARM OF THE STATE OF
WISCONSIN AS OPPOSED TO I JUST
DON'T HAVE TIME TO TAKE ON THIS
ADMINISTRATIVE BURDEN MYSELF.
YOU HAVE TO BE WILLING TO
CHALLENGE AND CHANGE
INSTITUTIONAL PRACTICES, IN
OTHER WORDS, TELL ME WHY I CAN'T
REIMBURSE MY PARTICIPANTS IN
CASH IF THEY ASK ME TO.
WHY?
TELL ME WHY YOU WANT A SOCIAL
SECURITY NUMBER FOR A $20
REIMBURSEMENT.
IT ILLEGAL.
FIRST OF ALL.
PEOPLE DON'T NEED TO GIVE US
THEIR SOCIAL SECURITY NUMBERS
AND SOMEDAY I'LL TELL YOU ABOUT
HOW I MAKE THEM UP SOMETIMES BUT
THAT'S ANOTHER DAY'S STORY.
YOU HAVE TO VALUE OTHERS AND BE
HUHUMBLE.
AND YOU HAVE TO REALLY BE
RESPECTFUL.
THIS IS A -- THESE KINDS OF
PROJECTS HAVE TO BE
COLLABORATIVE.
IF THEY'RE UNIDIRECTIONAL,
THEY'RE NOT GOING TO WORK.
SO I REALLY GO BACK TO
CONSUELO'S PAPER ALL THE TIME TO
MAKE SURE THAT OUR RESEARCH
TEAMS, THE ONES THAT I'M WORKING
ON AND ADVISING, REALLY THINK
ABOUT HOW TO BE MORE TRUSTWORTHY
AND ALSO PUSHING MY INSTITUTION
AND OTHER INSTITUTIONS TO BE
MORE TRUSTWORTHY BY REALLY
LOOKING CLOSELY AT INSTITUTIONAL
POLICIES AND PRACTICES THAT
DISADVANTAGE COMMUNITY GROUPS,
WHO VERY MUCH WANT TO
COLLABORATE WITH US BUT CAN'T
FIGURE OUT HOW TO DO IT.
SO THIS IS A PAPER THAT WAS JUST
PUBLISHED IN NOVEMBER AND IT IS
IN ARIZONA DIIN ALZHEIMER'S DISD
DEMENTIA AND IT IS ADDRESSING
THE PUBLIC AND PARTICIPANT
INVESTMENT IN I INCLUSIVE DEMENA
RESEARCH.
SO AS A DEMENTIA RESEARCHER I
LEAD THE OUTREACH AND
RECRUITMENT AND ENGAGEMENT CORE
FOR THE WISCONSIN ALZHEIMER'S
DISEASE RESEARCH CENTER.
THERE ARE GREAT CONCERNS THAT
OUR RESEARCH, OUR FINDINGS ARE
NOT GENERALIZABLE.
SO NIA HAS REALLY PUSHED
RESEARCH CENTERS TO CONSIDER THE
ROLES OF PARTICIPANT AND THE
PUBLIC AND HOW WE DO WHAT WE DO.
STARTING VERY EARLY IN THE
IDENTIFYING AND PRIORITIZING
RESEARCH AIMS, IN OTHER WORDS,
MY RESEARCH AIM MAY NOT BE THE
AIM OF THE COMMUNITY, IT MAY NOT
BE WHAT'S PERCEIVED TO BE MOST
IMPORTANT, SO BURDEN OF CARE MAY
IN FACT BE MORE IMPORTANT TO THE
INDIVIDUALS WITH MILD COGNITIVE
IMPAIRMENT OR DEMENTIA, AND I'M
INTERESTED IN, YOU KNOW, SOME
OTHER COGNITIVE VARIABLE WHICH
SEEMS TO BE COMPLETELY
DISCONNECTED FROM THEIR DAY TO
DAY LIVED EXPERIENCE.
THE SECOND ROLE IS DESIGNING
RESEARCH AND PROPOSALS AND
METHODS THAT ACTUALLY REFLECT
THE NEEDS AND INTERESTS OF THE
PARTICIPANTS INVOLVED.
IN OTHER WORDS, IN OUR CENTER,
WE ASK PEOPLE, 794 OF OUR
PARTICIPANTS, TO DO SERIAL
LUMBAR PUNCTURES.
NOW THAT'S A HARD ASK BUT PEOPLE
DO THEM BECAUSE, IN FACT, OUR
CENTER IS ALSO VERY ENGAGED IN
CAREGIVING RESEARCH AND
CAREGIVER EDUCATION AND
PROFESSIONAL EDUCATION IN
PROVIDING SERVICES AND RESOURCES
TO OUR STUDY PARTICIPANTS AND
THEIR FAMILIES.
IN OTHER WORDS, WE GET TO DO THE
SCIENCE WE FEEL WE NEED TO DO
PAUSE WE'RE ACTUALLY ENGAGING IN
A COLLABORATIVE EFFORT OF
ADDRESSING ALZHEIMER'S DISEASE
IN MANY FORMS WITH THE PEOPLE
WHO ARE SUPPORTING OUR WORK.
WE COULD NOT COULD IT WITHOUT
THEM.
WE ARE REALLY CAREFUL ABOUT
GETTING PARTICIPANT INPUT INTO
OUR RESEARCH CONDUCT AND
MANAGEMENT.
I HAVE A PARTICIPANT ADVISORY
BOARD WHO TELLS ME IF THE VISITS
GO WRONG, HOW BAD THE PARKING
IS, WHY WE DON'T GET -- WHY
HAVEN'T WE PROVIDED MONEY FOR
LUNCH, HOW COME WE HAVE TO COME
IN THREE TIMES FOR -- WHY
COULDN'T WE SCHEDULE A SINGLE
LONGER DAY IF THAT'S OUR
PREFERENCE, WHY ARE WE ALWAYS
WORKING ON OUR YOUR SCHEDULE,
NOT HOURS, WHY CAN'T WE COME IN
ON A SATURDAY MORNING FOR A
BLOOD DRAW?
ALL THESE THINGS AND OUR CENTER
HAS CHANGED IN RESPONSE TO THAT.
WE BRING PARTICIPANTS IN TO HEAR
PRELIMINARY RESEARCH ANALYSES,
OUR PRELIMINARY FINDINGS TO SEE
IF THEY MAKE SENSE AND IF WE'RE
BEING CLEAR, AND WE ENGAGE THEM
IN THE TI SEMI NATION OF
FINDINGS AND THEN WE START THE
PROCESS ALL OVER AGAIN.
I THINK THIS IS A GUIDE THAT'S
UNIVERSAL, I DON'T THINK IT'S
SPECIFIC TO ALZHEIMER'S
RESEARCH.
I THINK IT SPEAKS TO MANY, MANY
KIENTDZ OF RESEARCH AND THIS IS
THE PROCESS.
BUT WHAT THIS IMPLIES IS THAT
THIS IS A LONG-TERM
RELATIONSHIP.
WE'RE NOT IN IT FOR THE ONE AND
DONE.
YOU KNOW, OUR CENTER HAS BEEN
FUNDED, WE'RE FORTUNATE TO BE IN
OUR 15TH YEAR OF FUNDING.
WE JUST GOT RENEWED SO WE'RE
GOING TO BE GOING FOR 20 YEARS.
WE HAVE 20 YEARS OF ENGAGEMENT
TO ACCOUNT FOR.
WHICH MAKES OUR CENTER GENERALLY
SUCCESSFUL.
BUT THE IDEA IF WE COULD GO OUT
TO THE COMMUNITY ONCE A YEAR
WITH A LECTURE AND TELL PEOPLE
WHAT THEY NEED TO KNOW ABOUT
ALZHEIMER'S DISEASE, WE WOULDN'T
BE ABLE TO RECRUIT FOR THESE
HEAVY LIFTS THAT WE ASK OUR
PARTICIPANTS TO DO.
AND WE WOULDN'T BE VERY
SUCCESSFUL.
SO I'M GOING TO TELL YOU A
LITTLE BIT ABOUT A PROGRAM THAT
WE HAVE HERE SWITCHING GEARS A
BIT.
SO I'M PART OF NIA R33 CALLED
THE COMMUNITY ACADEMIC AGING
RESEARCH NETWORK, AND IT IS A
PROGRAM THAT COVERS THE STATE OF
WISCONSIN INCLUDING THE
WISCONSIN INSTITUTE FOR HEALTHY
AGING, THE AFRICAN AMERICAN
HEALTHCARE NETWORK, UNITE
WISCONSIN IS IN MILWAUKEE, AND
THE CENTER FOR COMMUNITY
ENGAGEMENT & HEALTH PARTNERSHIP
IS IN MILWAUKEE AND IT WAS
FUNDED BY NIA TO BRING THE
VOICES OF OLDER ADULTS,
PARTICULARLY RURAL AND AFRICAN
AMERICAN OLDER ADULTS, INTO
RESEARCH DESIGN AND EXECUTION.
SO DURING THE FIRST FUNDING
CYCLE, CARN PARTNERED WITH AGING
NETWORK SERVICE PROVIDERS AND
ADVOCACY GROUPS.
WE TRAINED RESEARCH LIAISONS
FROM PARTNERING ORGANIZATIONS
REPRESENTING THEIR HEALTHCARE
SYSTEMS AND AFRICAN AMERICAN
STAKEHOLDERS.
WE PROVIDED MULTIDISCIPLINARY
EXPERTS TO CONSULT DURING THE
DESIGN PHASE OF INTERVENTIONS
TRYINGS TO ACTUALLY GET THE
COMMUNITY ENGAGEMENT PIECE EARLY
ON BEFORE THE RESEARCH WAS
DESIGNED OR FUNDED.
WE SUPPORTED -- AND SUPPORT
COMMUNITY ADVISORY BOARDS TO
PROVIDE INPUT THROUGH ALL STAGES
AND WE CREATED TAILORED ADVISORY
BOARDS WITH VERY SPECIFIC
SUBJECT MATTER EXPERTISE THAT
ALWAYS INCLUDES REPRESENTATIVES
FROM COMMUNITY ORGANIZES AND
COMMUNITIES OF INTEREST.
SO THIS WAS VERY SUCCESSFUL.
WE FINISHED FIVE YEARS OF
FUNDING AND THIS IS JUST A LIST,
YOU CAN LOOK AT THIS LATER.
BUT IT GOES ALL THE WAY FROM
EVALUATING COLLABORATION WITH
COMMUNITY HEALTH WORKERS FOR
CANCER SCREENING, WORKING WITH
AHEC, WHO TRAINS COMMUNITY
HEALTH WORKERS.
I HAVE A LONG COVID STUDY THAT
I'LL TELL YOU A LITTLE BIT MORE
FOR RECRUITMENT OF BLACK OLDER
ADULTS TO ALZHEIMER'S DISEASE
INTERVENTION STUDIES.
I'LL REMIND YOU THAT IN THE VERY
FIRST FDA-APPROVED DRUG THAT WAS
IN TRIAL FOR ALZHEIMER'S
DISEASE, THERE WERE 10, I MEAN
10, AFRICAN AMERICAN
PARTICIPANTS.
NOW THAT'S EMBARRASSING.
SO THERE'S A TREMENDOUS NEED FOR
INDIVIDUALS DOING INTERVENTION
TRIALS TO BE MORE INCLUSIVE, SO
THE RESULTS ACTUALLY MIGHT BE
ABLE TO BENEFIT INDIVIDUALS AND
COMMUNITIES.
WE WORKED ON MENTAL HEALTH
INTERVENTIONS IN BLACK AND RURAL
COMMUNITIES ANYWAY, SO A WIDE
VARIETY OF DIFFERENT KINDS OF
PROJECTS WERE ENTERED INTO AND
THE RETURN ON INVESTMENT FOR
THIS PARTICULAR R33 WAS REALLY
SUBSTANTIVE, BOTH IN INTRAMURAL
AND EXTRAMURAL FUNDING.
LY SAYI WILL SAY WE JUST GOT RE,
THE NEW R33 IS FOCUSED ON
INCLUSION OF OLDER ADULTS,
PARTICULARLY AFRICAN AMERICAN
AND RURAL OLDER ADULTS IN THE
DEVELOPMENT AND TESTING OF
ASSISTIVE DEVICES.
SO WE'VE BROUGHT IN THE SCHOOL
OF ENGINEERING AS A PARTNER, AND
I HAVE TO SAY THESE ENGINEERS
ARE REALLY A LITTLE BIT
OVERWHELMED BY THE IDEA OF
TAKING THEIR PRELIMINARY DEVICE
IDEAS INTO THE COMMUNITY AND
GETTING TOLD, "I WOULD NEVER USE
THAT."
ONE OF OUR JUNIOR INVESTIGATORS
ARE A DEVICE THAT HE WANTED TO
USE THAT MEASURED GAIT THAT
ATTACHED TO AN ANKLE, AND THE
VERY FIRST GROUP HE SPOKE TO
WERE OLDER AFRICAN AMERICAN
WOMEN.
THEY SAID WE'D NEVER USE THAT.
IT LOOKS LIKE A MONITORING
DEVICE.
AND NONE OF US HAVE EVER BEEN
INCARCERATED SO WHY WOULD YOU
WANT US TO LOOK LIKE WE WERE
UNDER JAIL SUPERVISION?
SO HE HAD TO TAKE IT BACK TO THE
DRAWING BOARD.
BUT THAT'S THE VALUE OF EARLY
COMMUNITY INVESTMENT.
SO I'M GOING TO TELL YOU BRIEFLY
ABOUT MY LONG COVID STUDY JUST
AS AN EXAMPLE OF WHAT OUR
COMMUNITY ENGAGEMENT HAS WORKED
ON.
SO I'M DOING A LONG COVID STUDY,
REALLY LOOKING AT BRAIN FOG OR
ACTUALLY REAL PROBLEMS, AND I'M
SPEAKING TO A KNOWLEDGEABLE
GROUP IN PARTICIPATION.
SO MOST OF THE COVID STUDIES
INCLUDING THE RECOVER STUDY AND
OTHER CDC STUDIES HAVE LOOKED AT
A LOT OF DIFFERENT ASPECTS OF
LONG COVID, IMMUNOLOGICAL,
CARDIOVASCULAR, BUT VERY FEW OF
THEM HAVE ACTUALLY ATTEMPTED TO
MEASURE WHAT'S REALLY IMPORTANT
TO PEOPLE WITH LONG COVID IS
THEIR INABILITY TO ENGAGE IN THE
LIFE ROLES AND RESPONSIBILITIES
THAT ARE IMPORTANT TO THEM.
AND THE MAIN CAUSE THEY SUGGEST
WHEN YOU TALK TO PEOPLE WITH
LONG COVID IS THAT THEY HAVE
BRAIN FOG.
THEY CALL IT BRAIN FOG.
AND IT CAUSES TREMENDOUS
DISABILITY IN DAILY ROUTINES AND
ACTIVITIES.
AND WE FOUND THROUGH RESEARCH
WITH A PH.D. STUDENT THAT
DISABILITY ISN'T WELL UNDERSTOOD
IN INDIVIDUALS WITH LONG COVID,
THAT THE CLINICIANS DON'T HAVE
ENOUGH EVIDENCE ON SAFE AND
EFFECTIVE REHABILITATION, VERY,
VERY FEW PEOPLE, EVEN THOSE
HOSPITALIZED WITH COVID EVER GET
REFERRED FOR REHABILITATION
SERVICES, AND THE DISABILITY
PERSISTS AND THE DISRUPTION OF
LIFE IS PERSISTING.
WHAT WE ALSO REALIZED IS THAT
EVEN IN THE BIG RECOVER TRIALS,
IN THE ORIGINAL RECOVER STUDY
FUNDED BY NIH, THERE WAS
ADEQUATE REPRESENTATION OF
AFRICAN AMERICANS IN THE
ORIGINAL STUDY OF HOSPITALIZED
PEOPLE, BUT WHEN YOU LOOK AT THE
RECOVER INTERVENTION TRIALS, THE
PARTICIPATION RATES OF
INDIVIDUALS WITH A PRE-EXISTING
DISABILITY OR INDIVIDUALS FROM
COMMUNITIES OF COLOR IS
NEGLIGIBLE.
AND SO AS PART OF OUR FUNDING,
WE COMMITTED TO RECRUITING A
SAMPLE OF AT LEAST 30% AFRICAN
AMERICAN.
SO I DID THIS WITH THE HELP OF
MY AWESOME COMMUNITY PARTNER WHO
CAME FROM CAARN, THAT'S ME ON
THE LEFT WANTING TO DO THE
RESEARCH.
MY COMMUNITY PARTNER IS
MS. PETERSON GAINES, SHE'S A
NURSE WHO WORKS AS A COMMUNITY
RESEARCH ASSOCIATE WITH CAARN,
AND SHE ALSO LEADS THE HEALTH
MINISTRY AT MOUNT ZION BAPTIST
CHURCH HERE IN MADISON, AND SHE
WAS MY EQUAL PARTNER IN THE
DESIGN AND IMPLEMENTATION OF THE
LONG COVID STUDY.
AND I JUST WANT TO GO OVER
BRIEFLY WHAT SHE DID FOR US.
SO I HAD FIVE OCCUPATIONAL
THERAPY STUDENTS AND FIVE
UNDERGRADUATE STUDENTS FROM OUR
UW PROGRAM ON HEALTH PROMOTION
HEALTH EQUITY WHO WERE MY
RESEARCH TEAM.
MS. PETERSON GAINES WORKED VERY
HARD WITH THEM TO PREPARE THEM
TO BE IN THE COMMUNITY WORKING
WITH INDIVIDUALS OF COLOR.
SHE COACHED THEM, SHE DID ROLE
PLAYING WITH THEM, R.
SHE TOOK OUR RECRUITMENT
MATERIALS TO HER FELLOW
PARISHIONERS AT MOUNT ZION
CHURCH, SHARED THEM, GOT
COMMENTS AND BROUGHT THEM BACK
TO US.
MYCO-INVESTIGATOR IS AN
INFECTIOUS DISEASE SPECIALIST.
WE DID A SERIES OF MOUNT ZION
HEALTHY THURSDAY WEBINARS TO
INTRODUCE THE FACT THAT LONG
COVID IS A THING THAT PEOPLE IN
THE BLACK COMMUNITY HAVE LONG
COVID, THAT A LOT OF THE
PROBLEMS THAT THEY'RE
EXPERIENCING ARE, IN FACT, REAL,
AND THAT THERE ARE RESOURCES
THAT PEOPLE IN THE COMMUNITY
WERE NOT AWARE.
SO WE DID A SERIES OF HEALTHY
THURSDAY WEBINARS BEFORE WE
LAUNCHED OUR RECRUITMENT.
WITH HER HELP, WE ENGAGED OTHER
COMMUNITY ORGANIZATIONS IN DANE
COUNTY ABOUT LONG COVID, AND WE
ENDED OUR RECRUITMENT, WE WERE
OUT OF THE FIELD, WE RECRUITED
185 PEOPLE AND TESTED THEM IN
SIX MONTHS.
WHICH WAS REALLY GOOD.
AND 35% OF OUR SAMPLE ARE
AFRICAN AMERICAN.
CAROLA JOINED THE RESEARCH
COORDINATORS ON RECRUITMENT
CALL, SHE CALLED THEM TWO WAYS.
SHE WANTED TO MAKE SURE WHAT MY
RESEARCH COORDINATORS WERE
SAYING WAS APPROPRIATE AND WELL
RECEIVED BY OUR POTENTIAL
PARTICIPANTS.
SHE GAVE US FEEDBACK, SHE
CONTACTED EVERY PARTICIPANT THAT
WE RECRUITED FROM THE COMMUNITY,
FOUND OUT WHAT THEIR EXPERIENCE
WAS, WHAT THEY LIKED, WHAT THEY
DIDN'T LIKE, AND SHARED THAT
BACK WITH THE RESEARCH TEAM.
SO SHE WAS IN OUR RESEARCH TEAM
MEETINGS EVERY WEEK.
WE ORGANIZED EDUCATION TETIONS
AT MOUNT ZION CHURCH AND THE
PASTOR WHO CAME TO THE SESSIONS
ASKED US IF WE'D ACTUALLY LIKE
TO COLLECT OUR DATA AT THE
CHURCH, WHICH WAS SUCH A GIFT
BECAUSE STRANGELY ENOUGH, I LOVE
THE UNIVERSITY OF WISCONSIN
MADISON, THOSE OF YOU WHO HAVE
EVER BEEN THERE KNOW WITH HAVE A
BEAUTIFUL CAMPUS BUT PEOPLE FROM
THE BLACK COMMUNITY IN MADISON
ARE AFRAID TO COME ON OUR
CAMPUS, THEY LITERALLY ARE
AFRAID TO STEP ON THE CAMPUS.
SO IF I WANTED TO COLLECT MY
DATA IN MY OFFICE BUILDING WHERE
THE OCC BE PAITIONAL THERAPY
PROGRAM WAS, IT WAS GETTING
REALLY HARD TO GET PEOPLE TO
COME IN.
BUT NOBODY SAID NO TO A TESTING
SESSION AT MOUNT ZION.
SO MOUNT ZION GAVE US A TESTING
SPACE, PROMOTED IT THROUGH THEIR
WEEKLY BULLETINS AND WE WERE
ABLE, THROUGH THEIR HELP, TO
COLLECT THE SAMPLE VERY, VERY
QUICKLY AND FROM EVERYTHING I'VE
HEARD FROM THE PARTICIPANTS, IT
WAS A POSITIVE EXPERIENCE.
AND THEN WE MADE A COMMITMENT
THAT -- WE'RE JUST DOING THE
PRELIMINARY ANALYSES, BUT WE'LL
BRING THE ANALYSES BACK AT EACH
STAGE TO THE MOUNT ZION TEAM TO
GET THEIR FEEDBACK BEFORE WE
MOVE INTO THE NEXT HIGHER LEVEL
SETS OF ANALYSES.
SO IN THE LONG RUN, WE'RE GOING
TO COME UP WITH A SERIES OF
RECOMMENDATIONS FOR THE
COMMUNITY, FOR THE COMMUNITY
HEALTH WORKERS IN DANE COUNTY TO
HOW TO ADDRESS AND REFER PEOPLE
WHO APPEAR WITH LONG COVID.
SO I COULDN'T HAVE DONE THIS
PROJECT WITHOUT A COMMUNITY
PARTNER, AND IT'S SO MUCH BETTER
WITH HER INVOLVEMENT AND
ACTUALLY THE ENTIRE MOUNT ZION
COMMUNITY.
I GOT A GREAT SET OF SUPPORTERS
BY WORKING WITH ONE MEMBER OF
THEIR ORGANIZATION.
SO I HOPE YOU'LL SEE THAT AS A
POSITIVE EXAMPLE.
I'M GOING TO TURN THIS BACK TO
JOY NOW.
>> OKAY, THANK YOU, DOROTHY.
AND WHAT I WANT TO DO IS FOLLOW
UP ON WHAT DOROTHY JUST GAVE US
AS THE FIRST EXAMPLE OF
COMMUNITY-ENGAGED RESEARCH THAT
WAS FOCUSED IN ON RECRUITMENT
AND RETENTION.
AND USE A SECOND EXAMPLE OF HOW
TO SUSTAIN THAT IMPACT AND
CHANGE SYSTEMS AND POLICIES LONG
TERM.
SPECIFICALLY I'M GOING TO TAKE
YOU INTO A WHOLE SERIES OF
COMMUNCOMMUNITY-ENGAGED RESEARCE
BEEN DOING WITH THE DISABILITY
COMMUNITY FOCUSED ON IMPROVING
HEALTH, COMMUNITY LIVING AND
SOCIAL PARTICIPATION.
>> WE'VE GOT A QUESTION RIGHT
HERE, MICHELLE?
>> SORRY ABOUT THAT.
I JUST WANTED TO ASK DR. EDWARDS
A QUICK QUESTION.
WHEN YOU MENTIONED ABOUT THE
BEING ABLE TO DO THE EVALUATIONS
ON SITE, COULD YOU EXPLAIN WHAT
EXACTLY WERE YOU DOING WITH THE
GROUP ON SITE IN TERMS OF WHAT
WERE THE ACTUAL TESTING THAT WAS
HAPPENING?
>> SO I'M INTERESTED IN
SOMETHING CALLED FUNCTIONAL
COGNITION.
SO WE HAD A 2 1/2 HOUR-LONG
COGNITIVE ASSESSMENT BATTERY
THAT INCLUDED A LOT OF STANDARD
NEUROCOGNITIVE TESTS AND SOME
NEWER MEASURES THAT MEASURE
ACTUAL PERFORMANCE OF EVERYDAY
ACTIVITIES.
IT WAS A LONG BATTERY, TOOK
ABOUT 2 1/2 HOURS.
WE INCLUDED A 15-MINUTE BREAK.
BUT MOUNT ZION GAVE US THEIR
BIBLE STUDY ROOM SO THAT WE
COULD DO ONE-ON-ONE INDIVIDUAL
TESTING ON SITE, AND WE DID THEM
ON WEDNESDAYS AND SATURDAYS.
THEY WERE REALLY GENEROUS WITH
THEIR SPACE.
I HOPE I ANSWERED YOUR QUESTION.
>> THANKS.
>> OKAY, I WILL JUMP BACK IN ON
THE SECOND EXAMPLE HERE.
JUST TO NOTE THAT THE RESEARCH
THAT I'LL BE TALKING ABOUT HAS
BEEN FUNDED THROUGH NIDILRR AND
THROUGH NIH AND THE UIC CENTER
FOR CLINICAL AND TRANSLATIONAL
RESEARCH.
WHENEVER YOU'RE DOING
COMMUNITY-ENGAGED RESEARCH, YOU
REALLY WANT TO LISTEN VERY
CLOSELY TO THE COMMUNITY ABOUT
WHAT ARE THE KEY ISSUES THEY'RE
FACING, WHAT ARE THEIR HIGH
PRIORITY ITEMS.
WHAT YOU'RE SEEING HERE IS A
QUOTE THAT EXEMPLIFIES WHAT THE
DISABILITY COMMUNITY IDENTIFIED
AS A HIGH PRIORITY ISSUE.
THE QUOTE READS, THERE'S SOME
PEOPLE WHO REALLY NEED A NURSING
HOME.
YOU KNOW, PEOPLE WITH REALLY
SEVERE DISABILITIES THAT CAN'T
TAKE CARE OF THEMSELVES.
IT'S FOR THEIR OWN GOOD.
THEY'LL BE SAFER THERE.
AND I CAN'T TELL YOU HOW MUCH
I'VE HEARD THIS FROM HEALTHCARE
PROFESSIONALS AND POLICYMAKERS
OVER MANY DIFFERENT PROJECTS.
WHEREAS THE RESPONSE FROM THE
DISABILITY COMMUNITY IS, IT'S MY
RIGHT TO HAVE A CHOICE ABOUT
WHERE I LIVE.
AND I WANT TO LIVE IN THE
COMMUNITY WITH SUPPORTS.
AND WE KNOW THAT RIGHT HAS BEEN
MANDATED IN THE AMERICANS WITH
DISABILITIES ACT CIVIL RIGHT
LEGISLATION AS WELL AS THE
SUPREME COURT OLMSTEAD DECISION
THAT STATES THAT PEOPLE WITH
DISABILITIES DO HAVE A RIGHT TO
EXPLORE LEAST RESTRICTIVE
COMMUNITY LIVING AND STATES DO
HAVE A RESPONSIBILITY TO PROVIDE
EQUITABLE ACCESS TO HEALTHCARE
AND SUPPORTS IN THE COMMUNITY TO
DO THAT.
AND SO THIS LED TO A WHOLE
SERIES OF DIFFERENT
COMMUNITY-ENGAGED RESEARCH WE
DID WHICH FALLS REALLY PRETTY
SQUARELY UNDER PARTICIPATORY
ACTION RESEARCH, WHICH MEANS THE
DISABILITY COMMUNITY HAS BEEN
FULL PARTNERS IN DEFINING,
INVESTIGATING AND STRATEGIZING
THESE ISSUES, AND PARTICULARLY
FOCUSING IN ON THAT RIGHT TO GET
OUT OF NURSING HOMES AND
INSTITUTIONS AND INTO THE
COMMUNITY WITH SUPPORTS.
SO THE GOALS OF THIS RESEARCH
CERTAINLY ARE TO IMPROVE THE
HEALTH COMMUNITY LIVING AND
SOCIAL PARTICIPATION OF
DISABILITY COMMUNITY MEMBERS,
BUT THEY WERE ALSO TO BE ABLE TO
USE THAT EVIDENCE TO EFFECT
POLICY AND SYSTEMS CHANGE AND
THEN THE DISABILITY COMMUNITY
ALSO WANTED TO BUILD THEIR OWN
CAPACITY FROM WITHIN.
THEY KNEW THAT PEOPLE WITH
DISABILITIES THAT FOUND
THEMSELVES IN MEDICAID NURSING
HOMES PUBLICLY FUNDED NURSING
HOMES AND INSTITUTIONS WERE SOME
OF THE MOST OPPRESSED AND
MARGINALIZED PEOPLE WITH
DISABILITIES OUT THERE.
BECAUSE THEY WEREN'T GETTING
ACCESS TO INFORMATION, RIGHT?
AND SO THEY WANTED TO USE THESE
PROJECTS TO BUILD THAT CAPACITY
FROM WITHIN.
WE USED A LOT OF DIFFERENT
COMMUNITY-ENGAGED STRATEGIES TO
MAKE SURE THAT THE COMMUNITY WAS
ABLE TO COLLABORATE AND BE A
PARTNER THROUGHOUT THE ENTIRE
RESEARCH PROCESS LONG BEFORE WE
EVEN APPLIED FOR THE GRANTS, AND
LONG AFTER THE GRANTS WERE DONE.
SO JUST TO HIGHLIGHT A COUPLE OF
THESE, THE DISABILITY COMMUNITY
MEMBERS AND ORGANIZATIONAL
REPRESENTATIVES FROM GROUPS LIKE
CENTERS FOR INDEPENDENT LIVING
LIKE WE WORK WITH NATIONALLY
WERE BROUGHT IN AS KEY PAID
MEMBERS AND INVESTIGATORS WITHIN
THE RESEARCH TEAM.
SO SALARIED STAFF AND POSITIONS
AS WELL AS CONTRACTS WITH THE
COMMUNITY ORGANIZATIONS, SO THAT
THEY HAD THE RESOURCES TO
ACTUALLY BE ABLE TO REALLY
PARTICIPATE IN THIS RESEARCH.
AND BECAUSE OF THAT, WE WERE
ABLE TO GET A DIVERSE
REPRESENTATION AND RECRUITMENT
AND RETENTION, PARTICULARLY OF
PEOPLE WITH DISABILITIES WHO WE
KNOW ARE AT GREATER RISK FOR
LANDING UP IN A PUBLIC NURSING
HOME, AND THAT INCLUDES PEOPLE
WHO IDENTIFY AS AFRICAN AMERICAN
OR BLACK, AS WELL AS HISPANIC OR
LATINX OR INDIGENOUS GROUPS.
WE ALSO WERE ABLE TO RECRUIT AND
RETAIN GROUPS THAT WERE ALMOST
EXCLUSIVELY LIVING BELOW POVERTY
LEVELS.
WE KNOW IN PUBLIC NURSING HOMES
THAT WHEN PEOPLE GO IN, THEY
SIGN AWAY THEIR FINANCIAL
CONTROL, THEY HAVE NO FINANCIAL
ASSETS UNDERNEATH THEM, WHICH
MAKES IT REALLY DIFFICULT THEN
TO MOVE INTO THE COMMUNITY AND
BE ABLE TO SUPPORT YOURSELF.
SO THE WAY WE GOT IN IS THROUGH
THOSE COMMUNITY ORGANIZATIONS
AND WE CALLED IT THE UNDERGROUND
NETWORK, RIGHT, BECAUSE THE
NURSING HOMES WEREN'T OPENING
THEIR DOORS TO US.
THEY DIDN'T WANT US TO EVEN COME
IN TO SPEND TIME WITH PEOPLE.
BUT THE DISABILITY COMMUNITY
MEMBERS WERE GETTING IN THERE AS
FRIENDS AND AS SUPPORT NETWORKS,
AND THEY'RE THE ONES THAT HELPED
US TO TALK WITH PEOPLE ABOUT
THEIR RIGHTS AND ALSO INVITE
THEM TO BE A PART OF THIS
RESEARCH, AND IN THE END, WE
WERE ABLE TO RECRUIT A VERY
DIVERSE SAMPLE FOR ALL OF THOSE
CRITERIA.
THE OTHER THING I WANT TO POINT
TO HERE IS DOWN THE LIST A
LITTLE BIT, IS THAT WE BUILT IN
ACCESSIBILITY AND REASONABLE
ACCOMMODATIONS INTO OUR GRANT
BUDGETS AND INTO THE DAY-TO-DAY
OPERATIONS OF HOW WE TRAINED
RESEARCH STAFF, SO PEOPLE WITH
DIVERSE DISABILITIES COULD
PARTICIPATE.
NOT ONLY AS PARTICIPANTS IN THE
RESEARCH STUDY, BUT ALSO AS
MEMBERS OF THE RESEARCH TEAM AS
WELL.
AND YOU'RE SEEING HERE A WHOLE
HOST OF THINGS THAT WE WERE ABLE
TO BUILD IN TO FUND TO SUPPORT
THAT EQUITABLE INCLUSION HERE.
AND ONE OF THEM I WANT TO POINT
TO IS FOOD.
BECAUSE WE WERE QUESTIONED ON
THAT.
PEOPLE WERE LIKE WHY DO YOU HAVE
A BUDGET, YOU CAN'T DO THIS,
RIGHT?
WE HAD TO ACTUALLY ADVOCATE WITH
THE DISABILITY COMMUNITY TO
POINT OUT THAT THE KIND OF
RESEARCH WE'RE DOING ISN'T JUST
A NICE THING TO GIVE PEOPLE
PIZZA WHEN THEY DO A FOCUS
GROUP, RIGHT, AS AN INCENTIVE,
BUT FOR THIS GROUP OF PEOPLE WHO
LIVED IN PUBLIC NURSING HOMES
AND IN INSTITUTIONS, THEY
WEREN'T GETTING ACCESS TO GOOD
FOOD TO BEGIN WITH, AND THEN
WHEN WE BROUGHT THEM OUT INTO
THE COMMUNITY TO WORK WITH US ON
THESE ISSUES AND TO BE PARTS OF
THESE INTERVENTIONS THAT HE WITH
WERE DOING, OFTEN THAT FOOD WAS
WITHHELD AT THE NURSING HOME.
BY THE TIME THEY GOT BACK, THEY
DIDN'T HAVE ANY DINNER.
AND SO WE NEEDED TO PROVIDE FOOD
AS A REASONABLE ACCOMMODATION.
IT WAS A SURVIVAL MECHANISM HERE
FOR INDIVIDUALS HERE.
AND IN FACT, WE ACTUALLY
PROVIDED LOTS OF FOOD IN
PACKAGES SO THAT THEY COULD TAKE
IT WITH THEM AND TAKE IT BACK
AFTERWARDS IN THE NURSING HOME
AS WELL.
SO THAT'S JUST ONE EXAMPLE OF A
COMMUNITY-ENGAGED STRATEGY AND
HOW TO ADDRESS SOME OF THOSE
ISSUES OF ACCESSIBILITY AND
ENGAGEMENT.
WE ALSO WERE ABLE TO USE A
NUMBER OF DIFFERENT
COMMUNITY-ENGAGED RESEARCH
METHODS THAT COME FROM
PARTICIPATORY ACTION RESEARCH AT
CBPR.
WE TRIED DIFFERENT THINGS WITH
THE COMMUNITY THAT THEY BRING TO
US OFTEN IN WHATEVER PROJECT
WE'RE DOING.
I WANT TO POINT TO THE FIRST
ONE, AND THAT IS WE'VE USED
APPRECIATIVE INQUIRY
PARTICIPATORY FOCUS GROUPS.
WE ALL KNOW THAT LOTS OF US LIKE
TO USE FOCUS GROUPS IN OUR
RESEARCH, RIGHT?
BUT TYPICALLY WHAT HAPPENS IN A
FOCUS GROUP IS THEY ARE DONE AND
LED BY THE RESEARCHERS
THEMSELVES.
THE COMMUNITY COMES IN, SHARES A
LOT OF INFORMATION BUT THEN IT
TAKEN BY THE RESEARCHERS AND WE
DON'T KNOW WHETHER THE COMMUNITY
EVER EVEN KNOWS WHAT THE RESULTS
OF THOSE FOCUS GROUPS WERE, MUCH
LESS USE THEM IN ACTIONS.
SO AN APPRECIATIVE INQUIRY MODEL
OF DOING THIS KIND OF RESEARCH,
IT SHIFT IT A LOT TO A
COMMUNITY-ENGAGED MODEL OF DOING
THIS.
AND SO THESE FOCUS GROUPS ARE
CO-LED BY DISABILITY COMMUNITY
MEMBERS WHO HAVE THEMSELVES GONE
THROUGH GETTING OUT OF A NURSING
HOME AND INTO THE COMMUNITY AND
LONG-TERM MANAGING THEIR HEALTH,
RIGHT?
SO MORE TRUSTWORTHY AS DOROTHY
SAID AT THE BEGINNING.
THE OTHER THING THAT HAPPENS
WITH THESE FOCUS GROUPS IS
THEY'RE NOT A ONE-DONE KIND OF
THING.
IN APPRECIATIVE INQUIRY, IT
INVITES YOU TO BE PART OF A
PROCESS OVER TIME, WHERE THE
FIRST SET OF FOCUS GROUPS, YOU
GET TO DISCUSS SOME OF THE
ISSUES YOU'RE FACING, BUT YOU
ALSO GET TO IDENTIFY YOUR OWN
STRENGTHS AND ASSETS THAT YOU'RE
GOING TO BRING TO TRYING TO
SOLVE THESE ISSUES.
AND THEN IT MOVES YOU INTO A
DREAMING PHASE WHERE YOU GET TO
NO BOX AROUND IT, JUST
BRAINSTORM, WHAT DO YOU WANT
SERVICES TO LOOK LIKE, HOW DO
YOU WANT THIS INTERVENTION TO
LOOK LIKE AND DREAM WITH ME.
AND THEN IT MOVES YOU INTO A
PHASE OF ACTUAL CONCRETE ACTION
PLANNING, WHERE COMMUNITIES
WORKING WITH US AS HEALTHCARE
RESEARCHERS ON ACTUALLY
DESIGNING WHAT THE INTERVENTION
IS GOING TO LOOK LIKE OR WHAT
THE POLICY CHANGES THAT WE'RE
ADVOCATING FOR, AND THEY
SPECIFICALLY PLAN HOW THEY'RE
GOING TO GET INVOLVED.
SO PARTICIPATORY FOCUS GROUPS
UNDER APPRECIATIVE INQUIRY FEEL
REALLY DIFFERENT AND THEY YIELD
A LOT MORE INFORMATION, RIGHT,
THAT'S GOING TO BE REALLY USEFUL
TO COMMUNITY-ENGAGED
INTERVENTION DEVELOPMENT.
THE OTHER THING WE COUPLED WITH
IS IF YOU LOOK DOWN THE LIST A
LITTLE BIT, WE DID A LOT WITH
LIVED EXPERIENCE STORYTELLING.
WE USED PHOTO VOICE IF PEOPLE
PREFERRED TO TAKE PICTURES OR
LIKED A VISUAL WAY OF SHOWING
THEIR STORY INSTEAD.
WE CREATED SOCIAL MEDIA U TUBE E
VIDEOS DIRECTED BY THE COMMUNITY
TO TELL THEIR STORIES, AND THE
REASON WE DID THAT AND WE SPENT
SO MUCH TIME AND EFFORT ON DOING
THAT IS BECAUSE IF YOU'RE REALLY
GOING TO TRY TO CHANGE POLICIES
AND SYSTEMS AND/OR FUNDING
MECHANISMS HERE, YOU NEED TO NOT
ONLY HAVE THAT QUANTITATIVE
INFORMATION THAT YOU GET FROM
THESE OUT COME ASSESSMENTS, BUT
YOU ALSO NEED THAT QUALITATIVE
LIVED EXPERIENCE.
THE TESTIMONIALS ARE EQUALLY
POWERFUL TO CHANGING
POLICYMAKERS OR EVEN POLITICIANS
TO GET THEM ON BOARD WITH YOU TO
MAKE THAT CHANGE HAPPEN.
AND THEN ALL OF THESE WERE
SHARED IN A WHOLE SERIES OF
PUBLIC COMMUNITY TOWN HALLS THAT
WE DO, WE CONTINUE TO DO, WE
HAVE ONE COMING UP FAIRLY SOON.
AND THESE ARE OPEN TO ANYBODY
FROM THE DISABILITY COMMUNITY TO
JOIN US.
WE GET A CHANCE TO SHARE WHAT WE
FOUND IN THE RESEARCH, BUT WE
ALSO HIGHLIGHT THE STORIES FROM
THE DISABILITY COMMUNITY, AND
EVERY ONCE IN A WHILE, WE WILL
STRATEGICALLY INVITE IN KEY
POLICYMAKERS LIKE THE STATE OF
ILLINOIS MEDICAID PROGRAM
DIRECTORS, OR POLITICIANS, A KEY
SENATOR, SOMETHING LIKE THAT,
AND WE'LL ASK THEM TO SIT IN THE
FRONT ROW OF THE TOWN HALL AND
JUST LISTEN.
DON'T SAY ANYTHING, JUST LISTEN
TO THE STORIES, AND THEN AT THE
VERY END, WE'LL GIVE THEM A
CHANCE TO SAY, AND HOW COULD YOU
ADDRESS THESE ISSUES WITH THE
COMMUNITY?
SO WE USE TOWN HALLS VERY
STRATEGICALLY IN THAT WAY AS
WELL.
THIS IS JUST AN EXAMPLE OF ONE
OF THE INTERVENTIONS THAT WE
WERE ABLE TO CO-CREATE TOGETHER
WITH THE DISABILITY COMMUNITY.
THIS IS CALLED THE STEPPING
STONES PROGRAM.
SO IT'S SPECIFICALLY DESIGNED
FOR PEOPLE WITH DIVERSE
DISABILITY THAT LANDED UP IN
PUBLIC MEDICAID NURSING HOMES OR
INSTITUTIONS, AND IT PROVIDES
THEM THE STEPPING STONES ON HOW
YOU GET OUT, HOW DO YOU EVEN
KNOW WHAT YOUR RIGHT ARE, HOW DO
YOU FIND ACCESSIBLE HEALTHCARE
ACCESS AND PRESCRIPTIONS AND
HOUSING AND TRANSPORTATION AND
ALL THE DIFFERENT THINGS YOU
NEED TO EVEN MAKE THE COMMUNITY
LIVING TRANSITION, AND THEN HOW
DO YOU DEVELOP STRONG NETWORKS
OF SOCIAL SUPPORT AND CONNECTION
THAT KEEP YOU HEALTHY AND WELL
OUT IN THE COMMUNITY.
SO THIS IS JUST ONE EXAMPLE OF
AN INTERVENTION WE WERE ABLE TO
CO-CREATE, CODELIVER AS WELL AS
THEN DO A CLINICAL TRIAL
EVALUATION OF IT.
SO I WANT TO END WITH, HOW DO
YOU SUSTAIN THIS IMPACT OVER
TIME THEN?
SO EVIDENCE FROM THAT STEPPING
STONES INTERVENTION I JUST
SHOWED YOU, AS WELL AS THE
COMMUNITY-ENGAGED RESEARCH WE
DID, WAS USED BY THE DISABILITY
COMMUNITY AND A WHOLE NETWORK OF
LEGAL LAWYERS AND DISABILITY
PROTECTION AND ADVOCACY LEGAL
EXPERTS IN THREE CLASS ACTION
LAWSUITS AGAINST THE STATE OF
ILLINOIS MEDICAID.
UNDER THE ASSERTION THAT PEOPLE
WITH DISABILITIES IN THIS STATE
WERE NOT GETTING EQUITABLE
ACCESS TO GETTING OUT OF NURSING
HOMES AND INSTITUTIONS AND INTO
THE COMMUNITY, OR SUPPORTS TO
STAY OUT THERE.
THE STATE OF ILLINOIS LOST ALL
THREE OF THOSE LAWSUITS.
AND THEN THEY NEEDED TO TO
MASSIVE POLICY AND SYSTEMS
CHANGE.
SO IN THIS CASE, THE POLICY AND
SYSTEMS CHANGE WAS ALMOST FORCED
UPON THEM, SHALL WE SAY LEGALLY,
BUT EITHER WAY, THEY NEEDED TO
DO IT, RIGHT?
AND SO THAT'S WHERE THEY LOOKED
AT OUR STEPPING STONES PROGRAM
AND THE EVIDENCE WE HAD FROM IT
THAT IT WAS WORKING.
AND THEY DECIDED TO ACTUALLY
FUND STEPPING STONES NOW AS A
FORMAL PART OF HOME AND
COMMUNITY-BASED LONG-TERM
SERVICES AND SUPPORTS IN THE
STATE OF ILLINOIS.
SO IT IS NOW BEING DELIVERED BY
DISABILITY ORGANIZATIONS TO
THOUSANDS OF PEOPLE THAT HAVE
BENEFITED FROM IT AND CONTINUES
TO BE DELIVERED.
WE ALL SAW THE DISABILITY
COMMUNITY COLLABORATED NOW ON
MANY DIFFERENT FEDERAL GRANTS,
FOLLOW-UP GRANTS TO DEVELOP NEW
INTERVENTIONS THAT FOCUS IN ON
HEALTH, COMMUNITY LIVING AND
SOCIAL PARTICIPATION WITH PEOPLE
WITH DISABILITIES.
AND WE'VE WORKED A LOT ON MAKING
THOSE INTERVENTIONS ACCESSIBLE
TO AND PARTICIPATORY,
PARTICULARLY WITH PEOPLE WITH
STROKE, WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES, WITH
TRAUMATIC BRAIN INJURY AND WITH
MENTAL HEALTH OR PSYCHIATRIC
DISABILITIES.
AND SO WE'VE BEEN ABLE TO DO A
SERIES OF INTERVENTION RESEARCH
HERE TO ALSO APPLY THIS TO THE
BROADER DISABILITY COMMUNITY.
AND THEN THE FINAL POINT I JUST
WANTED TO POINT TO HERE IS THIS
LAST POINT IS THE DISABILITY
COMMUNITY CAME TO US AT UIC AND
SAID WE WANT TO GO EVEN FURTHER.
WE WANT YOU TO, ON A NATIONAL
BASIS FOR US, DOCUMENT THE
DISPARITIES THAT PEOPLE WITH
DISABILITIES AS A POPULATION ARE
FACING IN THE UNITED STATES
TODAY.
NOT ONLY IN ACCESSING
HEALTHCARE, BUT ALSO IN
COMMUNITY LIVING, IN GETTING
INTO THE WORKFORCE, IN BEING
ABLE TO EQUITABLY PARTICIPATE IN
COMMUNITIES.
AND SO THAT'S WHERE WE'RE NOW
WORKING ON A FEDERAL CENTER
GRANT WITH THE COMMUNITY TO
DOCUMENT THOSE DISPARITIES USING
LARGE SCALE POPULATION HEALTH
DATA AND DATASETS, AND WE NOW
PUT THAT AT A WEBSITE THAT WE'VE
CODEVELOPED TOGETHER.
YOU CAN SEE THE WEBSITE FOR
ADAPARC HERE WHERE IT'S IN
ACCESSIBLE VERSIONS, EASY TO
READ FORMAT SO THAT THE
DISABILITY COMMUNITY CAN TAKE
THIS INFORMATION AS WELL AS
POLICYMAKERS AND THEY CAN SHOW
AT A NATIONAL, AT A STATE, AT A
CITY AND DOWN TO EVEN A ZIP CODE
LEVEL, ARE PEOPLE WITH
DISABILITIES GETTING EQUITABLE
OPPORTUNITIES, SIMILAR TO WHAT
PEOPLE WITHOUT DISABILITIES
WOULD BE GETTING.
AND SO THAT'S WHERE WE'VE TAKEN
IT IN TERMS OF THE SUSTAINED
IMPACT ON A MUCH MORE POPULATION
LEVEL.
AND I'D LIKE TO HAND IT BACK TO
DOROTHY TO WRAP US UP THEN.
>> SO IN OUR CLOSING, OBVIOUSLY
WE'RE PREACHING TO THE CHOIR
HERE WHEN WE EMPHASIZE THE
IMPORTANCE OF SOCIAL
PARTICIPATION AND PARTICIPATION
IN GENERAL.
AND OBVIOUSLY NCMRR HAS BEEN
CRITICAL IN ADVANCING THAT AS
THE ULTIMATE GOAL OF ANY
INTERVENTION.
SO THE GUIDANCE FOR EFFECTIVE
COMMUNITY-ENGAGED RESEARCH
PROGRAMS WHETHER YOU'RE DOING
COMMUNITY-BASED PARTICIPATORY
ACTION RESEARCH OR MY KIND OF
COMMUNITY-ENGAGED RESEARCHER ARE
PRETTY MUCH THE SAME.
THEY'RE ESSENTIALLY THE SAME AS
FIRST OF ALL THE PARTNERSHIPS
NEED TO BE ESTABLISHED THAT ARE
TRULY RECIPROCAL.
YOU HAVE TO COMMIT TO SHARED
AUTHORITY, AND THAT TAKES TIME.
YOU CAN'T WRITE IN A REVIEW BY A
COMMUNITY ADVISORY COMMITTEE,
YOU KNOW, JUST BEFORE YOU SUBMIT
YOUR GRANT OR MOSTLY AFTER YOU
SUBMIT YOUR GRANT AND SAY OKAY,
YOU HAVE TO RECOGNIZE THE VALUE
OF THE LIVED EXPERIENCE AND
EXPERTISE OF COMMUNITY PARTNERS.
I'LL JUST BRIEFLY SAY THAT I
THINK THE RECOVER TRIALS FOR
LONG COVID WOULD BE A WHOLE LOT
MORE SUCCESSFUL IF ACTUALLY THEY
HAD DOCUMENTED THE LIVED
EXPERIENCE OF PEOPLE WITH LONG
COVID BECAUSE THE DEPENDENT
MEASURES IN MANY OF THESE
STUDIES ARE BEING ACHIEVED AND
SOME OF THE INTERVENTIONS BUT
PEOPLE AREN'T ABLE TO DO MORE,
THEY'RE NOT GOING BACK TO WORK,
THEY'RE NOT ABLE TO MANAGE
FAMILY RESPONSIBILITIES.
SO WHAT IS THE IMPACT OF ALL
THESE INTERVENTION STUDIES IF
IT'S NOT TO ACTUALLY HELP PEOPLE
GO BACK TO THE THINGS THAT ARE
MOST IMPORTANT TO THEM?
YOU HAVE TO BE INTENTIONAL.
YOU JUST CAN'T TAKE THE
COMMUNITY ADVISORY GROUP THAT
SOME OTHER PERSON PUT TOGETHER
FOR ANOTHER PROJECT.
IT REALLY REQUIRES UNDERSTANDING
WHO'S IN THE COMMUNITY, WHOSE
VOICES NEED TO BE HEARD, AND AS
JOYCE SAID, YOU HAVE TO HAVE
MULTIPLE REPRESENTATIVES, NOT A
SINGLE ONE, AND YOU CAN'T HAVE
THE INVESTIGATORS OUTNUMBERING
THE COMMUNITY PARTNERS AT THE
MEETING.
YOU'LL OFTEN GO -- I'LL OFTEN GO
TO MEETINGS, THERE ARE 10 OF US
AND FIVE COMMUNITY
REPRESENTATIVES AND THERE'S
SOMETHING WRONG WITH THAT
PICTURE.
ADOPTING INCLUSIVE LANGUAGE
TITLES, ROLES AND
RESPONSIBILITIES AND MAKING SURE
THAT ALL YOUR MATERIALS ARE
ACCESSIBLE BEFORE THEY'RE
PRESENTED IS REALLY IMPORTANT.
APPRECIATION IS PARTICULARLY
IMPORTANT BUT YOU HAVE TO KNOW
WHAT INCENTIVES ARE BEST FOR THE
COMMUNITY.
I RAN INTO TROUBLE ONCE, I WAS
DOING A STUDY OF
VIOLENCE-ASSOCIATED SPINAL CORD
INJURY IN MILWAUKEE, AND THE
YOUNG MEN WHO WERE PARTICIPATING
IN OUR PROJECT ACTUALLY WANTED
GIFT CERTIFICATES TO A SHOE
STORE, AND THE IRB SAID THAT'S
INSULTING, WHY WOULD PEOPLE WITH
SPINAL CORD INJURY OBVIOUSLY
CAN'T WALK, SO WHY WOULD YOU BE
GIVING THEM GIFT CERTIFICATES TO
A SHOE STORE?
IT'S LIKE, WELL, YOU KNOW, THEY
WEAR SHOES AND THIS IS WHAT THEY
ASKED FOR.
I WANT TO GIVE THEM WHAT THEY
ASKED FOR.
THIS IS WHAT THEY SAID.
AND SO BEING RESPONSIVE TO YOUR
POTENTIAL PARTICIPANTS IS REALLY
IMPORTANT.
OFFERING TRAINING.
OFTEN THE YOUR RESEARCH TEAM
NEEDS AS MUCH AND MORE TRAINING
THAN THE COMMUNITY
ORGANIZATIONS.
THERE'S A GREAT DEAL OF WISDOM
IN THE COMMUNITY THAT OFTEN GOES
UNRECOGNIZED.
YOU MAKE LONG TERM PLANS BUT
WORK TOWARDS SHORT TERM GOALS,
AND I THINK JOY'S EXAMPLE IS
REALLY THE BEST ILLUSTRATION TO
GO FROM A SINGLE STUDY
LOOKING -- A STUDY LOOKING AT
INDIVIDUALS IN
MEDICAID-SUPPORTED NURSING HOMES
TO A NATIONAL NETWORK AND WAY OF
MEASURING INEQUITIES IN
COMMUNITIES IS REALLY THE TRUE
STORY OF THE BENEFITS OF
COMMUNITY-BASED PARTICIPATORY
RESEARCH.
AND YOU HAVE TO COMMIT TO
HONESTY AND TRANSPARENCY, YOU
CAN'T OVERCOMMIT.
PEOPLE -- IN MY EXPERIENCE
COMMUNITY PARTNERS WILL LIVE
WITH WHAT YOU HAVE IF THEY KNOW
THEY'RE NOT GETTING THE SHORT
END OF THE STICK.
SO THAT'S SORT OF OUR QUICK
OVERVIEW.
I'M LOOKING FORWARD -- WE'RE
BOTH LOOKING FORWARD TO HEARING
YOUR QUESTIONS.
I THINK THIS IS THE WAY TO GO, I
THINK ALL RESEARCH NEEDS TO BE
COMMUNITY-ENGAGED.
AND IF YOU HAVE ANY SPECIFIC
QUESTIONS, PLEASE FEEL FREE TO
CONTACT JOY OR ME.
>> WELL, THIS IS A FEISTY GROUP
AND THEY DO HAVE SOME QUESTIONS.
>> OKAY.
>> WE'LL START WITH --
>> MY QUESTION FOR DR. EDWARDS,
I ABSOLUTELY LOVED YOUR
PARTNERSHIP WITH THE MOUNT ZION
CHURCH.
I MEAN, I'VE SEEN MANY
COMMUNITY-ENGAGED PROGRAMS,
PARTNERSHIPS LIKE THAT WITH
CHURCHES WHERE IT LIKE BRINGING
IN FLU SHOT CLINICS, COVID SHOT
CLINICS, SO THERE'S A LOT OF
THAT WORK GOING ON BUT JUST NOT
IN RESEARCH.
SO I THINK THIS IS DEFINITELY AN
AREA THAT PEOPLE COULD TAP INTO.
I'M CURIOUS HOW DID YOU CONNECT
WITH YOUR COMMUNITY PART, HOW
DID YOU CONNECT?
>> THAT'S A GREAT QUESTION.
SO MY COMMUNITY PARTNER,
MS. CAROLA PETERSON GAINES IS
FUNDED THROUGH THE NIA R33 THAT
WE HAVE.
I HAPPEN TO BE A P.I. ON THAT
BUT I REALLY NEEDED HELP WITH MY
OWN SPECIFIC STUDY, SO CAROLA
VOLUNTEERED TO HELP ME AND SHE
STARTED FROM THE VERY TIME THAT
WE STARTED DRAFTING THE PROPOSAL
FOR INTRAMURAL FUNDING.
AND SO THAT'S WHAT THIS
R33 DOES, IS IT PAIRS COMMUNITY
PARTNERS WITH INVESTIGATORS,
IDEALLY AT THE BEGINNING PHASE
OF THEIR STUDY DESIGN.
>> I HAD ONE LAST QUESTION.
I'D LOVE TO READ YOUR STUDY ON
VIOLENCE IN SPINAL CORD INJURY,
SO CAN I REACH OUT TO YOU ABOUT
THAT?
>> IT ACTUALLY NEVER GOT
PUBLISHED.
IN PART BECAUSE THE FINDINGS
WERE REALLY CONTROVERSIAL.
MILWAUKEE IS THE CAPITOL OF
VIOLENCE-ASSOCIATED SPINAL CORD
INJURIES.
THEY ACTUALLY WANTED TO GO BACK
TO WHAT THEY WERE DOING PRIOR TO
THEIR INJURY, AND
MYCOINVESTIGATOR, WHO IS A
PHYSICIAN AT THE MEDICAL COLLEGE
OF WISCONSIN, WAS SO
UNCOMFORTABLE WITH THAT FINDING,
HE DIDN'T WANT US TO MOVE
FORWARD WITH THE PUBLICATION.
>> UNDERSTOOD.
THANK YOU.
>> SO I'M SORRY.
>> THAT'S OKAY.
IT'S ANOTHER CONVERSATION.
>> KARL, I WANT TO ASK A
QUESTION, THEN KATHLEEN HAS A
QUESTION FROM ZOOM LAND.
>> MY NAME IS KARL COOPER,
EXECUTIVE DIRECTOR OF THE
ASSOCIATION ON HEALTH AND
DISABILITY, YOU'RE SPEAKING OUR
LANGUAGE.
I LOVE TO HEAR THIS
PRESENTATION, IT WAS FANTASTIC.
I HAVE A COUPLE STATEMENTS AND I
DO HAVE TWO QUESTIONS.
FIRST OF ALL, I WOULD POINT OUT,
AND I'M SURE THAT YOU ARE
ALREADY AWARE OF THIS, AND
PRACTICE THIS, WHEN YOU'RE
TALKING ABOUT REPRESENTATION OF
DIVERSITY AND INCLUSION, IT GOES
BEYOND JUST INCLUDING
DISABILITY, IT'S ALSO DIVERSITY
AMONG THAT.
FOR INSTANCE, WHENEVER YOU'RE
DOING OUTREACH AND PUTTING
IMAGES AND STUFF LIKE THAT, THE
COMMON EXAMPLE I ALWAYS GET IS,
RESONATES WITH ME, IS THAT WHITE
PEOPLE IN WHEELCHAIRS.
AND FOR ME, THAT WORKS.
BUT THAT DOESN'T WORK FOR A LOT
OF PEOPLE WITH DISABILITIES.
AND MAKING SURE THAT WE'RE
INCLUDING NOT JUST DIVERSITY OF
DISABILITY BUT ALSO DIVERSITY OF
RACE AND ETHNICITY THAT
OBVIOUSLY THERE IS
INTERSECTIONALITY OF DISABILITY
AND OTHER POPULATION GROUPS.
THAT'S MY STATEMENT.
THE OTHER AREA IS REALLY MORE
ON -- OR THE TWO QUESTIONS I
HAVE IS REALLY MORE DIRECTED AT
SORT OF BROAD APPROACHES ON
COMMUNITY ENGAGEMENT, AND THAT
IS IN TERMS OF WHEN YOU'RE
TRYING TO DO A STUDY, WHETHER
IT'S THE ONE, DR. EDWARDS, THAT
YOU WERE DOING ON THE -- WHERE
THE ALZHEIMER'S RESEARCH OR ANY
RESEARCH SPECIFICALLY, WHAT HAVE
YOU DONE TO MAKE SURE THAT WE'RE
NOT EXCLUDING CERTAIN PEOPLE
WITH DISABILITIES?
AND THE EXAMPLE THAT I'M GOING
TO GIVE IS ONE THAT I HAVE BEEN
HARPING ON FOR YEARS NOW, AND
THAT'S INCLUSION OF PEOPLE WITH
INTELLECTUAL DISABILITIES IN
RESEARCH STUDIES BECAUSE LET'S
FACE IT, YOU TALK ABOUT IRBs
AND THE PROBLEMS THEY HAVE,
GETTING THROUGH THE PROTOCOLS TO
MAKE SURE THAT YOU'RE DOING
PROXY CONSENT AND ALL THAT KIND
OF STUFF CAN BE A PAIN IN THE
NECK BUT IT'S SOMETHING THAT I
THINK THAT GROUP GETS LEFT OUT
OF SO MUCH RESEARCH, SO QUESTION
AS TO WHAT YOUR PARTICULAR
UNIVERSITIES HAVE DONE TO MAKE
SURE THAT THAT GETS DONE, AND
THEN I ALSO HAVE ANOTHER
QUESTION TOO.
>> SO JOY, MAY I GO FIRST ON
THIS?
>> SURE.
>> SO MY COLLEAGUE, FACULTY HERE
IN THE PROGRAM IN OCCUPATIONAL
THERAPY HAS TWO DIFFERENT PCORI
GRANTS TO WORK WITH INDIVIDUALS
WITH INTELLECTUAL DISABILITIES
TO ENSURE THAT THEY ARE INCLUDED
IN RESEARCH, AND I WAS THE SITE
P.I. FOR THE ALL-OF-US PRECISION
MEDICINE INITIATIVE, AND THEY
REALLY GAVE ME HOLY HELL THAT WE
WERE NOT INCLUDING PEOPLE WITH
INTELLECTUAL DISABILITIES.
AND DEVELOPED ACTUALLY A PROCESS
FOR ENGAGEMENT AND INCLUSION IN
RESPONSE TO THEIR VERY REAL
COMPLAINTS THAT THIS NATIONAL
INCLUSIVE RESEARCH PROGRAM WAS
ACTUALLY EXCLUDING INDIVIDUALS
WHO MIGHT BENEFIT FROM THE
RESEARCH OVERALL.
SO I'VE HAD GOOD COACHING FROM
CARLA'S -- AS PART OF HER PCORI
SHE WAS WORKING WITH SPECIAL
OLYMPICS INTERNATIONAL AND THEY
ACTUALLY DEVELOPED A TOOLKIT FOR
INVESTIGATORS FOR APPROPRIATE
INCLUSION OF INDIVIDUALS WITH
INTELLECTUAL DISABILITIES,
INCLUDING IN THE PCORI DB -- IN
SORT OF THE PCORI APPROACH AND
COINVESTIGATORS, SO I HAVE
LEARNED QUITE A BIT, AND MY NEXT
PROJECT ACTUALLY AS WE BEGIN TO
MOVE INTO THE COMMUNITY FOR LONG
COVID, THINKING ABOUT
INTERVENTIONS, ACTUALLY WE'LL
HAVE REPRESENTATION FROM THAT
GROUP.
FROM THE VERY BEGINNING.
>> AND I'D JUMP IN WITH THAT AS
WELL TOO.
SO FIRST OF ALL, I COMPLETELY
AGREE WITH YOU ON THE FIRST
COMMENTS ABOUT IDENTITY, THAT
PEOPLE WITH DISABILITIES ARE
COMING, A, DIVERSE DISABILITIES
THAT USUALLY ARE HAPPENING
TOGETHER.
IT'S NOT LIKE THEY JUST HAVE ONE
DIAGNOSIS AND THAT'S IT EVEN
THOUGH WE TRY TO DO THAT IN NIH
RESEARCH, RIGHT?
THEY'RE EXPERIENCING MULTIPLE
CONDITIONS AND DISABILITIES AT
THE SAME TIME.
BUT ALSO THE UNDERREPRESENTED
GROUPS AND INTERSECTIONS THEY'VE
GOT.
SO WHETHER IT'S BY RACE OR
ETHNICITY, BY SEX, BY GENDER
ORIENTATION, BY OTHER GROUPS.
ARE INCREDIBLY IMPORTANT, AND I
THINK, AGAIN, UNLESS YOU'RE
ENGAGING WITH COMMUNITIES THAT
HAVE OUTREACH INTO THOSE GROUPS,
YOU'RYOU'RE GOING TO MISS THEM.
SO I DO THINK THAT'S WHY IT'S SO
IMPORTANT WITH, SAY, CENTERS FOR
INDEPENDENT LIVING OR OTHER
GROUPS THAT WE'VE WORKED WITH,
THAT WE'RE HAVING REPRESENTATION
IN THAT AND THAT THEY'RE
INVOLVED IN OUTREACHING TO THOSE
GROUPS AND BRINGING THEM TO THE
TABLE, RIGHT?
FOR PEOPLE WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES,
WE'VE DONE A LOT WITH -- WE HAD
THE NIDILRR CENTER GRANT ON
WORKING WITH PEOPLE WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES ON COMMUNITY LIVING
AND COMMUNITY PARTICIPATION, AND
THAT INCLUDED A REALLY STRONG
NETWORK OF IDD GROUPS, INCLUDING
PEOPLE FIRST, SELF-ADVOCATES
BECOMING EMPOWERED, GROUPS OUT
OF ARC AND OTHER NATIONAL
ORGANIZATIONS, BUT DEFINITELY
SHALL WE SAY ADVOCACY GROUPS
THAT WERE RAN BY PEOPLE WITH IDD
ABOUT PEOPLE WITH IDD.
AND THEY'RE THE PEOPLE WHO
CONSULTED ON EVERYTHING THAT WE
DID.
THEY WERE PART OF THE RESEARCH
TEAM AND PAID MEMBERS OF THAT
RESEARCH TEAM.
THAT THEY TALK TO US ABOUT HOW
DO YOU DO CONSENT AND ASCENT.
THEY ACTUALLY WORKED WITH OUR I
RP B AT UIC TO DEVELOP NOT ONLY
A COMMUNITY-BASED VERSION OF
IRB, BUT A VERSION OF IT THAT
HAD MUCH MORE VISUALS AND
PICTURES AND OTHER THINGS IN IT
THAT WERE ACCESSIBLE TO PEOPLE
WITH IDD AS WELL.
SO EVEN LIKE ATTACKING OUR OWN
UNIVERSITY TO SAY YOU NEED TO
CHANGE YOUR PRACTICES FOR
INCLUSION.
IT TO THE US THAT NEEDS TO
CHANGE.
SO I WOULD AGREE WITH YOU THAT
THAT'S A REALLY IMPORTANT GROUP.
BUT I WOULD ALSO SAY THAT WE'RE
ALSO -- THERE'S A LOT OF OTHER
PEOPLE WITH DISABILITIES
EXPERIENCING COGNITIVE
DISABILITIES TOO, THAT ARE OFTEN
EXCLUDED FROM RESEARCH BECAUSE
OUR VERY ASSESSMENTS OR
INCLUSION AND EXCLUSION CRITERIA
ALREADY HAVE PREEMPTED THEM FROM
BEING ABLE TO DO IT.
SO PART OF WHAT WE'RE TRYING TO
DO IS REVALIDATE THOSE
ASSESSMENT TOOLS SO INDEED THEY
DON'T SCREEN OUT PEOPLE WITH
DISABILITIES, AND THEY'RE VALID
FOR PEOPLE WITH DISABILITIES TO
BE ABLE TO PARTICIPATE, AND
REALLY QUESTIONING OUR
INCLUSION/EXCLUSION CRITERIA ON
DO YOU REALLY HAVE A GOOD REASON
FOR WHY THESE INDIVIDUALS ARE
CONSIDERED NOT TO BE ABLE TO DO
THIS.
OFTEN WHEN THEY COME IN TO THE
RESEARCH THAT WE'RE DOING, WE
GET, YOU KNOW, FROM OUR IRB
SAYING THERE'S NO WAY THEY'RE
GOING TO BE ABLE TO DO A SELF
MANAGEMENT PROGRAM IN THE
COMMUNITY, THEY'RE TOO RISKY,
AND LIKE WE BRING THEM IN AND
THEY DO IT.
WITH THE RIGHT MENTORING AND
EVERYTHING ELSE, THE RIGHT
SUPPORTS, IT HAPPENS AND SO
WE'RE OFTEN EDUCATING OUR OWN
UNIVERSITY AS MUCH AS WE ARE OUR
OWN SELVES ON THIS ONE.
>> SO I'D LIKE TO JUST JUMP IN
BRIEFLY AND SAY THAT IN THE NIH
REVIEW, THERE'S INCLUSION OF
UNDERREPRESENTED GROUPS ACROSS
THE LIFESPAN THAT COMES IN AFTER
THE SCIENTIFIC REVIEW, AND
THAT'S A REALLY SIGNIFICANTLY
UNDERUTILIZED TOOL.
A PERSON WHO UNDERSTANDS
ENGAGEMENT RECRUITMENT AND
BARRIERS TO -- UNREASONABLE
BARRIERS TO RECRUITMENT CAN
ACTUALLY STOP THE FUNDING AND
TELL THE INVESTIGATOR
DEMONSTRATES THE CAPACITY TO
FULLY ENGAGE IN COMMUNITIES OF
INTEREST, INCLUDING THE BUDGET.
IN OTHER WORDS, AND I FIND THAT
ON STUDY SECTIONS, MOST PEOPLE
GLOSS OVER THAT AND THEY JUST
LOOK AT THE CUT AND PASTE
INFORMATION FROM AN IRB PROTOCOL
AS OPPOSED TO A BUDGET FOR
ENGAGEMENT, A BUDGET FOR
INCLUSION, ACCOMMODATIONS FOR
PEOPLE WITH DIFFERENT KINDS OF
IMPAIRMENTS, AND SO I WANT TO
ENCOURAGE PEOPLE ON STUDY
SECTIONS TO MAKE FULL USE OF
THAT REQUIRED REVIEW SECTION,
AND I'LL BE QUIET NOW.
>> BEFORE WE GO TO KATHLEEN FOR
THE FINAL QUESTION, I JUST WANT
TO CONGRATULATE YOU TWO FOR --
ACTUALLY IT'S GOOD TO SEE JOY
AGAIN.
JOY WAS A FORMER BOARD MEMBER
YEARS AGO.
SO I APPRECIATE YOU TAKING THIS
FROM THE REALM OF BEING
SOMETHING -- IT'S NOT SUCH A
MATTER OF POLITICAL CORRECTNESS,
BUT POINTING OUT IT ACTUALLY
MAKES BETTER STUDIES, MORE
EFFECTIVE STUDIES, STUDIES THAT
ARE MORE GENERALIZABLE AND
PROBABLY HAVE A QUICKER -- YOU
DON'T HAVE TO WAIT 17 YEARS TO
GET SOMETHING IN FOUR.
SO I'M GLAD YOU BRING THAT
MESSAGE OUT TO REVIEWERS, YOU
IT'S NOT JUST NIH POLICY BUT
IT'S GOING TO MAKE YOUR STUDY
BETDER BETTER AND WE HAVE TO GEE
WORD OUT.
SO KATHLEEN, I'LL GIVE YOU THE
FINAL QUESTION.
>> HI, DOROTHY I'M NOT SURE IF
YOU REMEMBER ME BUT IT'S BEEN A
LONG TIME.
TREERYLY INTERESTING WORK, THANK
YOU BOTH FOR PRESENTING THIS.
SO I WANTED TO SAY TWO THINGS.
ONE, AT THE NATIONAL MS SOCIETY,
THEY'VE CREATED A COMMUNITY
REVIEW OF MS RESEARCH COMMITTEE
WITH THE IDEA THAT IT'S A
COMMITTEE COMPLETELY MADE UP OF
PEOPLE AFFECTED BY MS, THAT
INCLUDES CAREGIVERS AND PARENTS,
BUT NO SCIENTISTS OTHER THAN THE
SCIENTISTS AT THE SOCIETY THAT
HELP TO TRANSLATE SOME OF THE
WORK.
AND THAT'S WHERE WE'VE HAD A BIG
STRUGGLE BECAUSE THE SCIENTISTS
DON'T KNOW HOW TO EXPLAIN THEIR
WORK IN LAY TERMS AND WE CALL IT
A PLAIN LANGUAGE DESCRIPTION.
WE PROVIDE DIRECT COMMENTS BACK
TO THE SCIENTIST APPLICANTS, AND
YET MANY OF THEM JUST DON'T
KNOW -- THEY GO INTO THE JARGON
SO QUICKLY.
AND IT'S INTERESTING BECAUSE
WE'VE HAD TO HAVE WHAT WE
CREATED WERE OFFICE HOURS, WHICH
IS ESSENTIALLY A SCIENTIST
TALKING TO THE COMMITTEE ABOUT
THEIR QUESTIONS TO SORT OF MAKE
THE JARGON MAKE SENSE.
BECAUSE THEY NEED TO KNOW ENOUGH
ABOUT THE STUDY, EVEN IF IT'S A
MOUSE STUDY OR A CELLULAR STUDY,
THEY NEED TO KNOW ENOUGH ABOUT
TO WEIGH IN ON RELEVANCE TO THE
MS COMMUNITY, THE ENTHUSIASM.
THEY WANT PATIENT-CENTERED
CONCERNS FOR THAT KIND OF WORK,
BUT WE THINK AS A SOCIETY THAT
THAT CONTRIBUTION IS STILL
REALLY IMPORTANT THAT THE
COMMUNITY KNOWS ABOUT THIS.
SO I JUST AM WONDERING IF YOU
HAVE ANY ADVICE ON HOW TO TEACH
PEOPLE HOW TO WRITE PLAIN
LANGUAGE ABOUT THEIR WORK AND
HOW WE CAN IMPROVE THAT.
>> KATHLEEN, THAT'S A BIG
CHALLENGE THAT WE FACE.
WE ACTUALLY HAVE A DEPARTMENT
HERE AT UW IN SCIENTIFIC
COMMUNICATION AND WE HAVE
STUDENT INTERNS THAT REVIEW A
LOT OF OUR PUBLICATIONS AND OUR
MATERIALS BEFORE WE TAKE THEM TO
THE COMMUNITY, BUT THERE'S
NOTHING LIKE A COMMUNITY GROUP
TELLING A SCIENTIST THAT THE
WORK IS PROBABLY REALLY NICE BUT
NONE OF IT MAKES SENSE AND WHY
CAN'T THEY -- IF THEY TAKE THE
MONEY, WHY CAN'T THEY EXPLAIN
IT?
I THINK YOU SOMETIMES NEED TO
HIT PEOPLE BETWEEN THE EYES
SAYING, OUR ORGANIZATION IS
FUNDING YOUR WORK, BUT YOU CAN'T
EXPLAIN WHAT YOU'RE DOING TO US?
I DON'T THINK WE SHOULD GIVE YOU
ANY MORE MONEY UNTIL YOU FIGURE
THAT OUT.
>> I'VE FOUND THE COMMUNITY TO
BE EXTREMELY CLEVER, SO ONE
PERSON ON OUR COMMITTEE BROUGHT
UP IF THEY CAN'T EXPLAIN TO ME,
HOW ARE THEY GOING TO EXPLAIN TO
AN IRB PANEL?
AND I WAS LIKE, YOU'RE RIGHT, I
MEAN -- BUT THE REALITY IS, AT
LEAST WHERE I WAS AT HOPKINS,
THE IRB PANEL WERE SCIENTISTS,
SO THEN THEY'RE STILL NOT REALLY
PUTTING IT INTO LAY LANGUAGE.
SO IT JUST SEEMS LIKE THIS GAP,
TEACHING US HOW TO WRITE IN
PLAIN TERMS.
>> SO OUR CTSA, WHICH YOU KNOW
FUNNELS A LOT OF NIH MONEY INTO
PILOT AND DEMONSTRATION PROJECTS
HAS A COMMUNITY REVIEW PANEL FOR
ALL OF THE FUNDED PROJECTS, AND
THERE HAS TO BE A LAY SUMMARY
THAT MAKES SENSE, AND THEY TURN
DOWN A LOT OF PROJECTS.
I HAVE TO SAY THE HIT RATE IS
ABOUT 30% AFTER -- SO THINGS
THAT HAVE GONE THROUGH THE
SCIENTIFIC REVIEW, ONLY ABOUT
30% OF THEM MAKE IT THROUGH THE
LAY REVIEW AND THEY DON'T GET
FUNDED UNTIL THEY SATISFY THE
LAY REVIEWERS.
THAT'S BEEN INSTITUTIONALIZED
HERE, AND IT'S MADE A
DIFFERENCE, BUT SO PEOPLE GET
THROUGH THE PROPOSAL PROCESS BUT
THEN THEY WRITE THEIR PAPERS,
AND IT RIGHT BACK TO THE
SCIENTIFIC LANGUAGE AND JARGON,
SO I THINK IT'S A DOUBLE EDGE
PROBLEM ACTUALLY.
>> AGREED, AGREED.
SO IF THERE'S ANYTHING YOU CAN
DO TO HELP TEACH SCIENTISTS AS
THEY COME UP THROUGH THE RANKS,
BUT YOU NEED TO BE ABLE TO SPEAK
IN SCIENCE TERMS BUT ALSO
TRANSLATE THAT.
BUT THANK YOU SO MUCH, THIS WORK
IS REALLY GREAT AND REALLY
IMPORTANT.
>> SHE WAS MY COACH EARLY ON,
SO --
>> I'D ADD TO IT TOO, EXAMPLES,
EXAMPLES, EXAMPLES, RIGHT?
YOU KNOW, KIND OF THING.
SO I'M GOING TO USE THE IDD
COMMUNITY AGAIN AS A REALLY GOOD
EXAMPLE.
THERE ARE SEVERAL JOURNALS IN
THE IDD COMMUNITY THAT ACTUALLY
FORCE THE RESEARCH TO GIVE A
PLAIN LANGUAGE SUMMARY AND
THEY'RE IN THE JOURNAL, LIKE
THEY'RE PUBLISHED.
I KNOW EVEN IN ACRM, REHAB
MADISON HAS BEEN DOING A WHOLE
SERIES UNDER THIS AS WELL.
TO ACTUALLY GET IT IN PLAIN
LANGUAGE, WHATEVER KIND OF --
HOWEVER YOU'RE CALLING IT,
RIGHT, ACCESSIBLE LANGUAGE, AND
ARE DOING LOTS OF EXAMPLES OF
HOW TO DO IT, RIGHT?
SO I THINK THAT'S REALLY
IMPORTANT FOR US TO DO IT.
AND THEN THAT MEANS OUR
PROFESSIONAL ORGANIZATIONS,
THOUGH, TOO NEED TO BE GIVING
THOSE, THOSE EXAMPLES AND
WORKSHOPS ON HOW TO BE DOING IT,
RIGHT?
IF THEY WANT TO HAPPEN, THE WAY
YOU LEARN IT IS TO LEARN IT FROM
EXAMPLES THAT WERE DONE WITH THE
COMMUNITY.
AND I'D ALSO SAY, YOU KNOW,
AGAIN, RESOURCES, WE'VE BEEN
DOING IT MORE LIKE CAN YOU PUT
IN RESOURCES TO DO COGNITIVE
INTERVIEWING WITH COMMUNITY
MEMBERS AT THE END, NOT JUST AT
THE BEGINNING, BUT WHILE YOU'RE
TRYING TO GET YOUR RESULTS
OUT --
>> I'M SORRY --
>> TO TALK IT THROUGH.
>> I'M SORRY TO CUT THIS OFF BUT
WE HAVE PEOPLE WHO HAVE PLANES
TO CATCH.
THIS HAS BEEN FABULOUS.
SO I'M GOING TO -- 30 SECONDS.
>> I'LL MAKE THIS REAL QUICK AND
I'LL MAKE IT MORE A STATEMENT
THAN A QUESTION.
FIRST OF ALL DR. EDWARDS, I
APPRECIATE WHAT YOU SAID ABOUT
ALL OF THIS BECAUSE WE'RE FUNDED
ON THAT PROJECT AND WE'VE BEEN
TRYING TO MAKE THAT CHANGE AS
WELL.
AND -- BUT REALLY THE THING WE
WERE TALKING ABOUT YESTERDAY WAS
THE WHOLE ISSUE AROUND
DISABILITY IDENTITY AND WHETHER
PEOPLE SEE THEMSELVES AS
DISABLED.
SO THE OTHER QUESTION I WAS
GOING TO ASK BUT MAYBE JUST
SOMETHING TO PONDER AND THINK
ABOUT IS HOW ARE WE ENGAGING
THOSE FOLKS THAT MIGHT NOT
NECESSARILY SEE THEMSELVES IN
THAT POPULATION GROUP?
YOU PUT UP THE CDC GRAPHIC
EARLIER THAT SHOWS ALL THE
DIFFERENT PEOPLE WITH
DISABILITIES AND GROUPS.
A LOT OF THOSE FOLKS DON'T VIEW
THEMSELVES THAT WAY, AND HOW
WE'RE MAKING SURE WE'RE STILL
INCLUDING THOSE.
>> THANK YOU.
CAN I STEAL THE MICROPHONE?
OKAY.
SO WE HAVE FIVE MINUTES LEFT.
I HAVE TWO ASKS FOR YOU ALL.
TOPICS FOR NEXT MEETING IN MAY.
YOU CAN EITHER EMAIL THEM TO ME
AND RALPH OR YOU CAN LET ME KNOW
AS YOU'RE WALKING OUT THE DOOR.
THE SECOND ASK IS THAT WE WILL
BE RECRUITING SEVEN NEW MEMBERS
FOR THIS BOARD, INCLUDING BOTH
SCIENTIFIC AS WELL AS PUBLIC
MEMBERS.
SO IF YOU HAVE IDEAS FOR PEOPLE
WHO WOULD BE GREAT, WE WOULD
APPRECIATE THAT.
AND THEN LAST BUT NOT LEAST,
THANK YOU, SO WE HAVE OUR
WONDERFUL SUPPORT TEAM, SHANARD,
AMY, DEBBIE, WILL HELPING WITH
I.T., PLUS ALL THE PEOPLE YOU
DON'T SEE IN THE ROOM WHO ARE
MAKING SURE THIS IS VIDEOCAST
AND RECORDED WITH NIH, SO THANK
YOU TO THEM.
I HAVE BEEN TOLD THAT THIS WAS
THE RECORD FOR THE LARGEST FILES
THAT THEY HAVE EVER DEALT WITH,
SO CONGRATULATIONS, MICHELLE,
PEPE, BOB, LARGEST FILE.
AND THEN ELI IS A, I THOUGHT I
SAW ELIZA COME IN.
THANK YOU TO ELIZA, WHO HELPS
WITH ALL THE LOGISTICS AND
GETTING YOU GUYS HOME ON TIME.
>> AND I WANT TO MAKE SURE WE
GIVE DOROTHY AND JOY A LITTLE
ROUND OF APPLAUSE FOR THEIR
PRESENTATION TOO.
[APPLAUSE]
>> WELL, IT WAS GREAT TO BE
INVITED.
THANK YOU SO MUCH.
I TONIGHT GET A CHA DON'T GET AK
WITH JOY VERY OFTEN SO THIS WAS
A DELIGHT FOR ME.
>> YES, THANK YOU SO MUCH FOR
THE INVITATION.
>> WE REALLY APPRECIATE IT.
>> SO THANKS, EVERYBODY, FOR ALL
OF YOUR ACTIVE PARTICIPATION.
THAT'S ONE OF THE THINGS I LIKE
SO MUCH ABOUT THIS GROUP.
AND ON TO YOUR PLANES AND WE'LL
SEE YOU IN MAY.
>> THANK YOU.