CAPTIONS BEGIN SHORTLY
>> SO AT THIS POINT I'LL TURN
THE MREETH OVER TO 42 BOARD
CHAIR, BARBARA BREGMAN TO TAKE A
QUICK ROLL CALL.
>> WELCOME BACK, EVERYONE.
IN TERMS OF ROLL CALL, DAWN
>> HERE.
>> BOB SANDBERG.
FRANCISCO?
LOUIS WHETTON.
>> GOOD MORNING.
>> I KNOW WADE IS HERE.
KATHERINE ZAKOWSKI.
>> HERE.
>> SHERRY.
>> HERE.
>> PEPE.
>> HERE, GOOD MORNING.
>> MICHELLE.
LAURA, GOOD MORNING.
>> GOOD MORNING.
>> STEVE?
>> I'M HERE.
>> THANKS, BOB.
THANKS, STEVE.
>> CHRIS.
>> GOOD MORNING.
>> STEVE KRAMER.
>> ERIC JONES.
AND SARAH BLATTON.
>> GOOD MORNING.
>> THANKS, SO MUCH, EVERYONE FOR
JOINING US TODAY.
I AM DELIGHTED TO WELCOME
DR. WADE SCHRADER.
HE'S AN ORTHOPEDIC PEDIATRIC
SURGEON OF THE CEREBRAL PALSY
CENTER AND ON THE BOARD OF
DIRECTORS, AMERICAN ACADEMY OF
CEREBRAL PALSY AND REVIEWER AND
EDITOR AND CONTRIBUTOR IN
NUMEROUS JOURNALS AND BOOK
CHAPTERS.
DELIGHTED TO HAVE DR. SCHRADER
SHARE HIS THOUGHTS ON
TRAJECTORIES ON CEREBRAL PALSY
AND WHAT DO NASA AND AACPDM HAVE
IN COMMON.
>> I HOPE EVERYONE CAN HEAR ME
WELL.
I WILL START SHARING MY SCREEN.
>> IT'S MY GREAT HONOR AND THANK
YOU RALPH FOR THE OPPORTUNITY
AND I'VE THOROUGHLY ENJOYED
BEING ON THE ADVISORY BOARD.
WE'LL TALK ABOUT TRAJECTORIES ON
CEREBRAL PALSY AND WHAT DOES
NASA AND THE AACPDM HAVE IN
COMMON.
HOPEFULLY THERE'LL BE SOME FUN
ALONG THE WAY WE CAN SEE.
I KNOW A LOT OF US IN LIFE
SCIENCES AND HEALTH CARE DON'T
TALK ABOUT SPACE TRAVEL AND OUR
SPACE INDUSTRY MUCH AND SO I
THINK IT WILL BE FUN.
RALPH AND I HAD FUN COMING UP
WITH THAT TITLE.
SO MY DISCLOSURES I'M THE
CURRENT PRESIDENT OF AACPDM.
IT'S BEEN THE HIGHLIGHT OF MY
CAREER AND I'M THE FATHER OF TWO
YOUNG ADULTS WITH CP.
AND SO I THINK THIS TALK'S BEEN
FUN TO PUT TOGETHER BECAUSE IT'S
BEEN ABLE IT TALK ABOUT THE
TRAJECTORY OF MY LIFE TO USE THE
NASA TERMS AS WE'LL KEEP USING
THROUGHOUT THE COURSE OF THIS
TALK.
AND HOW MY TRAJECTORY CHANGED
WHEN I DECIDED TO GO TO MEDICAL
SCHOOL AND THEN OF COURSE I
CHANGED PROFOUNDLY WHEN OUR KIDS
WERE BORN AND THE SUBSEQUENT
DIAGNOSIS OF CP AND HOW IT LET
TO MY CURRENT CAREER.
TALKING ABOUT TRAJECTORIES AND
WITH A LITTLE TALK ABOUT NASA
FOR A FEW MINUTES.
I GREW UP IN A SMALL TOWN IN
MISSISSIPPI BUT LIKE A LOT OF US
WHO ARE CHILD PRODUCTS OF THE
LATE '60s, I LOVED NASA.
I LOVED EVERYTHING ABOUT IT AND
EXCITED TO HEAR ABOUT THE LATEST
NEW NASA LAUNCHES.
I WATCHED THE DEVELOPMENT OF THE
SPACE SHUTTLE WITH A LOT OF KEEN
INTEREST.
SO I DECIDED TO GO INTO THAT
CAREER AND GOT MY BACHELOR'S OF
SCIENCE FROM MISSISSIPPI STATE.
I WAS FORTUNATE.
MY FIRST JOB WAS IN FLIGHT
MECHANICS AT NASA'S SPACE CENTER
IN HUNTSVILLE, ALABAMA.
MARSHALL IS SITUATED AT THE RED
STONE ARSENAL WHICH IS ARMY
MISSILE AND SPACE COMMAND.
THAT'S WHERE THE GERMAN
ENGINEERS SETTLED AFTER WORLD
WAR II WHO WERE INSTRUMENTAL IN
THE ROLE OF THE DEVELOPMENT OF
THE SPACE PROGRAM.
THAT'S WHERE ALL THE VEHICLE
ENGINEERING WAS DONE FOR ALL OF
OUR EARLY ROCKETS, MERCURY,
GEMINI AND A POPOLLO AND THE SAN
5 ROCKET.
IN THE DISTANCE IS WHERE THEY
TESTED THE ROCKETED AND YOU
COULD MEASURE AS AN EARTHQUAKE
ALL AROUND ALABAMA WHEN THEY
TESTED THAT.
MY PRIMARY ROLE WAS TO DEVELOP
THE GUIDANCE AND DESIGN THE
TRAJECTORIES FOR THE NATIONAL
LAUNCH SYSTEM AND WE'LL TALK
ABOUT THE NLS IN A MINUTE.
THERE'S A LOT OF LEGACY OF
FOLLOWING IN THE FOOTSTEP
THERE'S IN MARSHALL.
THE REASON WE WERE HIRED AND
THERE WAS A BOOM IN THE LATE
'80s AND '90s IS THE SPACE
SHUTTLE FLEET WAS IN DANGER OF
BECOMING OBSOLETE.
THERE WAS THE SPACE SHUTTLE
INCIDENT LOOMING AND THERE WAS A
CONTRAST ON WHAT WE NEEDED FOR
THE COUNTRY AS A LAUNCH VEHICLE
SYSTEM.
DID WE THESE SOMETHING THAT
COULD PUT A TON OF PAYLOAD IN
ORBIT AND RELIABLE LIKE THE
SATURN 5 ROCKET.
IT HAD SO MUCH REDUNDANCY IT
COULD LOSE IN ENGINES AND STILL
DELIVER THE PAY LOAD OR WANTED
SOMETHING SLEEK LIKE A REUSABLE
SPACE PLAIN.
THAT BECAME SUCH ATOUGH
TECHNOLOGY TO MANAGE AND WAS
LIKE A FINICKY RACE CAR WITH A
NARROW WINDOW OF PERFORMANCE.
THERE WERE LOTS OF DAYS IT
COULDN'T LAUNCH BASED ON WEATHER
AND IN FACT THAT'S THE MAIN
REASON THE CHALLENGER ACCIDENT.
IT LAUNCHED WHEN IT WAS TOO COLD
BASED ON THE CERTAIN DESIGN
PARAMETERS.
IN ADDITION IT WAS A TOUGH
ENGINEERING SOLUTION TO GET THE
SPACE SHUTTLE READY TO LAUNCH IT
TOOK A WHOLE ARMY OF PEOPLE FOR
EVERY LAUNCH THAT ATE UP A BIG
CHUNK OF THE NASA BUDGET EVERY
YEAR.
THEN IN THE EARLY '90s WE WERE
TRYING TO BUILD THE SPACE
STATION FORMALLY CALLED SPACE
STATION FREEDOM AND THAT'S WHAT
IT LOOKED LIKE.
THERE WERE FINANCIAL CONSTRAINTS
AND TRYING TO BUILD THE SPACE
STATION THAT ULTIMATELY BECAME
THE INTERNATIONAL SPACE STATION
AND I'LL TALK ABOUT THE POLITICS
OF THAT IN A MINUTE AND HOW I
WAS IN THE MIDDLE OF IT AND A
CAL -- COOL STORY.
THE NLS WAS SET UP TO BE A
REPLACEMENT FOR THE SPACE
SHUTTLE AN WAS A NEXT GENERATION
OF BLEND OF SHUTTLE TECHNOLOGY.
YOU CAN SEE THE NLS AND THE
SOLID ROCKET BOOSTERS OF THE
SPACE SHUTTLE AND THE EXTERNAL
FUEL TANK AS THE MAIN FUSELAGE.
AS THE COMBINATION OF TECHNOLOGY
AND PHILOSOPHY AND ENGINEERING.
THAT'S WHAT I WORKED ON IN THE
EARLY '90s AND NOW HAS COME TO
FREW ALMOST 30 YEARS LATER WE
NOW HAVE THE SLS THE SPACE
LAUNCH SYSTEM AND THE ARTEMIS
PROJECT IS BEING LAUNCHED IN
SPACE.
YOU ARE CAN SEE IT LOOKS SIMILAR
TO THE NLS IN THE 1990s.
NASA IS LIKE MEDICAL PROGRAM AND
YOU WHEN YOU DO Ph.D. TRAINING
YOU DIVERSIFY IN WHAT YOUR SKILL
SET WAS AND I ENJOYED MY EARLY
TIME IN NASA IN ADDITION TO
OTHER THINGS AND LITERALLY WORK
ON TRAJECTORIES FOR LUNAR AND
MARS MISSION AND TRYING TO
MINIMIZE THE TIME HUMANS WERE IN
SPACE AND TRANSIT TO MARS AND I
WORKED ON EVERY NASA SPACE
CENTER HAS ITS OWN OPERATION
CENTER LIKE A MINI MISSION
CONTROL.
THE HUNTSVILLE ONE WAS THE
OPERATION SUPPORT CENTER AND
THAT'S A PICTURE OF IT THERE.
AND HUNTSVILLE AND MARSHALL WAS
INVOLVED IN A LOT OF THE VEHICLE
ENGINEERING.
SO THE ENGINE WORK WAS STATED
AND MARSHALL DESPITE SOME
ASTRONAUT TRAINING BEING MOVED
TO HOUSTON.
SO WHAT IT DOES IS IT HAS PEOPLE
SITTING ON CONSOLE LIKE MISSION
CONTROL WHERE THEY GET DATA FROM
THE ENGINES AND I FORTUNATE TO
WORK ON THAT AND SIT ON CONSOLE
FOR SDS45 THE SPACE SHUTTLE
DISCOVERY WHICH SHOWS THE
MISSION LAUNCHING ON THE RIGHT.
THAT WAS A COOL THING FOR ME TO
BE ABLE TO DO.
I WANT TO TALK ABOUT THE
MECHANICS AND THE ORBIT WE PUT
SATELLITES IN AROUND THE EARTH
HAS AN INCLINATION ANGLE,
MEANING THE ANGLE WITH RESPECT
TO THE EQUATOR HOPEFULLY YOU CAN
SEA IS AND IT'S DICTATED BY THE
LATITUDE OF THE LAUNCH SITE.
MOST THE THINGS WE LAUNCH IN THE
UNITED STATES GET LAUNCHED INTO
AN ORBITAL INCLINATION
RESPECTIVE TO THE EQUATOR.
THAT'S THE LATITUDE OF CAPE
CANAVERAL.
IT'S THE MOST EFFICIENT WAY OF
PUTTING INTO ORBIT.
WE CAN PUT THINGS IN OTHER
ORBITAL INCLINATIONS BUT IT
TAKES A LOT OF ENERGY AND FUEL
AND IN THE SPACE LANGUAGE THAT
JUST MEANS IT'S ALSO PAY LOAD.
SO AS I SAID THERE'S A BIT OF AN
INTERSECTION BETWEEN POLITICS
AND PHYSICS.
THE END OF THE COLD WAR CHANGED
NASA PROFOUNDLY.
THERE WAS TALK THEN AND THERE
WERE FINANCIAL CONSTRAINTS ABOUT
THE SPACE STATION.
THERE WAS THE DECISION TO
INCLUDE RUSSIA INTO THE SPACE
STATION AND WE CHANGED THE NAME
TO THE INTERNATIONAL SPACE
STATION AT THAT TIME.
IT DID CHANGE A LITTLE BIT OF
THE COMPONENTS BUT THE BIG THING
IT CHANGED WAS WE AGREED TO
CHANGE THE INCLINATION ANGLE TO
51.6 DEGREES.
THAT'S THE LATITUDE OF THE
COSMODROME IN KAZAGSTAN WHERE
THE RUSSIANS LAUNCH THEIR SPACE
VEHICLES.
THAT PUT A BIG CONSTRAINT ON OUR
LAUNCH SYSTEMS.
WE DIDN'T HAVE ANY OTHER LAUNCH
VEHICLES TO LAUNCH TO THE SPACE
STATION AT THE TIME.
TO BUILD IT WE ENDED UP USING A
LOT OF RUSSIAN TECHNOLOGY AND
LAUNCH VEHICLES BUT HAD TO
CHANGE THE GUIDANCE TO STEER
THERE.
THIS IS THE PLOT OF THE
ACCELERATION.
THE SPACE SHUTTLE WITH THE WINGS
COULDN'T TAKE NEARLY THE LOADS
THE SATURN 5 ROCKET COULD PUT
ON.
WE HAD TO STEER OVER THE
INCLINATION UP TO THE 21.6
DEGREES.
AND DO THAT WITHOUT EXCEEDING
THE LOAD LIMITS YOU CAN SEE AT
THE END OF THIS YOU CAN SEE HOW
THE LOADS FLATTEN OFF.
WE HAD TO DO THAT TO MAKE SURE
WE DIDN'T EXCEED THE LOAD LIMITS
OF THE WINGS OF THE SHUTTLE AND
SNAP THE WINGS OFF AS WELL AS
MAKING SURE THE ASTRONAUTS
DIDN'T BLACK OUT.
I GOT TASKED TO MODIFY THE
PACKAGE AND THAT WAS FUN.
THE ONLY TIME I WORKED DIRECTLY
ON THE SPACE SHUTTLE OTHER THAN
THE LAUNCH ON SDS45 AND
FORTUNATE TO WIN A NASA SPECIAL
SERVICE AWARD FOR THAT WORK.
SO AS I MENTIONED THE END OF THE
COLD WAR TRANSFORMED NASA.
THERE WERE DECREASING BUDGETS
AND HAD TO MAKE DECISIONS TO
CONTINUE TO BUILD THE
INTERNATIONAL SPACE STATION OR
BUILD THE SHUTTLE REPLACEMENT
AND BUILD NLS.
THAT WAS HARD DECISION AND WHAT
YOU CAN ALMOST SEE COMING YOU
COULD ALMOST SEE THIS BIT OF
TIME AND IF I CAN USE THE WORD
STAGNATION THE UNITED STATES
DIDN'T HAVE A WAY TO LAUNCH
VEHICLES OURSELVES INTO ORBIT.
WE COULD LAUNCH SATELLITES BUT
NOT HUMANS AND WE LAID ON
RUSSIANS FOR THAT.
I COULD SEE DOING FEASIBILITY
STUD Y AND MY BRANCH IS WHAT
THEY'VE DONE.
YOU'VE SEEN THE PICTURES OF THE
SLS HAS TAKEN 30 YEARS TO BUILD
THE LAUNCH VEHICLE.
I'M GLAD THEY'RE ABLE TO NOW AND
I'VE KEPT IN TOUCH AND THEY'RE
EXCITED ABOUT THE ARTEMIS
PROJECTS.
PERSONALLY I WAS AT A CROSSROADS
AND SEEMED I HAD PATHWAYS TO A
CAREER CHANGE TO CONSIDER
MEDICINE AND PERHAPS CALLING ME.
ABOUT THAT TIME MY FATHER IN LAW
DIED OF CANCER AND MY WIFE AND A
WERE AROUND COMPLEX HEALTH CARE
A GOOD BIT AND SEEMED EVERYWHERE
WE WERE SEEING FRIENDS OR PEOPLE
WE WORKED WITH CHILDREN WITH CP
OR SPINAL BIFIDA AND STARTED
PLANTING THE SEEDS OF WHAT THE
TRAJECTORY OF MY LIFE WAS.
I WENT TO MEDICAL SCHOOL AND MY
WIFE WENT TO GRAD SCHOOL AND
THOUGHT WE'D START A FAMILY.
IN MY SECOND YEAR OF MEDICAL
SCHOOL WE FOUND OUT WE WERE
EXPECTED TRIPLETS.
MULTIPLES WERE ON MY WIFE'S
FAMILY AND I WASN'T A SURPRISE
TO HAVE TWINS BUT TRIPLETS WAS A
SURPRISE AND HAD COMPLICATIONS.
SHE WAS PUT ON BED REST AND
ADMITTED TO HOSPITAL 21 WEEKS
AND THE TRIPLETS WERE BORN AT 28
PLUS FOUR AFTER SOME GOOD
HEMORRHAGING AND COMPLICATIONS.
HERE THEY ARE IN THE NICU AND
BENJAMIN AT TWO POUNDS AND 15
AND MASON AT TWO POUNDS FIVE
OUNCES AND CLAIR AT TWO POUNDS
AND NINE OUNCES AND THERE THEY
ARE IN A SINGLE BABY SWING TO
POSE FOR THE PICTURE.
IF YOU'VE BEEN IN AN NICU IT'S A
PLACE OF OVERWHELMING
TECHNOLOGY.
WE DO A JOB OF SAVING PRETERM
BABY THESE DAYS BUT THERE'S
CONSTANT DANGER AND CODES AND
DEATH AND IT WAS QUITE
TERRIFYING FOR US AND THAT WAS
EVEN AFTER TWO YEARS OF ME BEING
AROUND MEDICAL SCHOOL.
THE KIDS DID WELL THROUGH THE
NICU BUT ALL THREE OF THEIR HEAD
ULT
ULTRASOUNDS WERE NEGATIVE AND
MASON WAS TOLD MAYBE SHE HAD A
SMALL BLEED AND LOOKED FOR
INTRACRANIAL HEMORRHAGES THAT
WERE A SIGN OF CEREBRAL PALSY
AND WERE TOLD ALL SHOULD BE FINE
WITHOUT SIGNIFICANT
DISABILITIES.
THEY WERE SENT HOME DURING MY
THIRD YEAR OF MEDICAL SCHOOL.
WE WERE EXHAUSTED AND JUGGLING
THINGS BUT IT SOMED WE HAD
DODGED A MAJOR DISASTER IN OUR
FAMILY'S LIFE.
I WAS AT THE UNIVERSITY OF
CHICAGO AND WE WERE ONE OF THE
MEMBERS OF THE TEMPS STUDY
GROUP.
WE KNOW THERE'S STANDARDIZED
DEVELOPMENT TRAJECTORIES OF FULL
TERM PREGNANCIES BUT WE ALWAYS
ASSUME THOSE DEVELOPMENT
PROFILES GOT SHIFTED BY THEIR
CORRECTED AGES FOR KIDS WITH
PREMATURITY AND THE TIP STUDY
WAS A MULTI-CENTER STUDY AND THE
KIDS GOT ON THE COVER OF THE
PHYSICAL THERAPY TEXTBOOK.
WE WERE CLOSELY MONITORED.
WE HAD THERAPISTS IN THE HOUSE
ALMOST EVERY WEEK.
THEY WERE BORN PREMATURE AND
PART OF NICU FOLLOW-UP AND EARLY
INTERVENTION AND SO HAD A CLOSE
EYES ON THE BOYS AND HAD OUR OWN
DEVELOPMENT WORKSHOP WHERE OUR
DAUGHTER WAS DOING INCREDIBLY
WELL AND MEETING THE MILESTONES
AND OUR SONS HAD NOTICEABLE
DEVELOPMENT DELAYS.
I WAS NOW A THIRD YEAR MEDICAL
STUDENT GOING IN MY FOURTH YEAR.
I WAS KEEN TO LEARN AS MUCH AS I
COULD ABOUT PREMATURITY AND
DEVELOPMENT DELAYS.
WE KIND OF KNEW THE DIAGNOSIS
WAS COME CANNING BUT IT DIDN'T
CHANGE THE SHOCK OF WHAT THAT
WAS.
THERE'S THE THREE OF THEM
TOGETHER AND THERE'S BENJAMIN AT
AGE 1.
YOU CAN SEE THAT WAS THE FIRST
SURGERY WE HAD TO GO THROUGH AND
COMMON COMORBIDITY IN CHILDREN
WIN CEREBRAL PALSY.
-- WITH CEREBRAL PALSY.
THERE HE IS AFTER THE STRBISMUS
SURGERY AND HAD THREE OR FOUR
MORE SURGERIES WHICH IS NOT
UNCOMMON.
WE WERE REFERRED TO A
PEDIATRICIAN AND BOTH BOYS WERE
DIAGNOSED WITH CEREBRAL PALSY
AND WHAT IS BRANDED INTO MY
BRAIN IS NOT THE TIMING OF THE
DIAGNOSIS OR ANYTHING, IT WAS
HOW THE DEVELOPMENT PEDIATRICIAN
GAVE US THE DIAGNOSIS.
IN A VERY HURRIED CLINIC, REALLY
NOT HAVING A LOT OF TIME FOR US,
NOT REALLY LOOKING AT US AND
BLURTED OUT OF COURSE HE HAS CP
WHAT DID YOU EXPECT ME TO SAY.
THAT WAS A FORMATIVE DAY IN MY
LIFE AND CAREER AS A PHYSICIAN.
I REALIZED EARLY THEN AND THAT
WAS OUR FIRST FORMAL DAY OF
BEING PARENTS OF CHILDREN WITH
DISABILITIES BUT KNEW THE WAY WE
APPROACH THE FAMILIES NEEDED TO
GET BETTER.
I DIDN'T KNOW EXACTLY HOW I WAS
GOING TO GO ABOUT DOING THAT TO
MAKE A DIFFERENCE.
I CAN REMEMBER AND HEAR HIS
VOICE LIKE IT HAPPENED
YESTERDAY.
I WENT ON TO DO MY ORTHOPEDIC
SURGICAL RESIDENCY AT THE MAYO
CLINIC AND THOUGHT I'D DO JOINT
REPLACEMENTS.
I WAS AN ENGINEER SO IT SEEMED
KIND OF RIGHT.
DURING MY SECOND YEAR OF RES
RESIDENCY WE TOOK CARE OF KIDS
WITH CP.
I LOVED IT AND LOVED DEALING
WITH THE CHILDREN AND PARENTS
AND FOUND MYSELF AS A RESOURCE
FOR THEM.
I FOUND A COMMUNITY I COULD
SHARE WITH AND ASK ME QUESTIONS
THAT THEY COULDN'T ASK FROM
OTHER ATTENDINGS.
AND I FELT LIKE THIS WAS MY NEW
PURPOSE IN LIFE TO HELP OTHER
FAMILIES LIKE MINE.
SO I'M GOING TO SHIFT GEARS A
LITTLE BIT TO TALK HOW MY
TRAJECTORY AND CAREER
INTERSECTED ONE DUPONT OR
NEMOURS AND TALK ABOUT THE
RESEARCH WE'RE DOING.
WE HAVE A WIDE MENU OF DIFFERENT
TYPES OF RESEARCH ENDEAVORS
WE'RE DOING HERE AT NEMOURS AND
I'D LIKE TO SHOWCASE THAT
BRIEFLY AND QUICKLY.
THEN I'LL WRAP UP ABOUT WHAT I
THINK IS PROBABLY I THINK ONE OF
THE MOST FUNDAMENTAL POTENTIAL
CONTRIBUTIONS I COULD HAVE IN MY
CAREER AS I REFLECT ON BEING A
PARENT OF A CHILD WITH CP AND
TALKING ABOUT THE PSYCHO-SOCIAL
MODEL OF CEREBRAL PALSY.
SO DUPONT WAS STARTED IN
WILMINGTON DELAWARE BY ALFRED
DUPONT.
THEY SETTLED IN THE DELAWARE
VALLEY AND WERE ORIGINALLY GUN
POWDER MAKERS AND WENT ON TO
MAKE THE DUPONT CHEMICAL
COMPANY.
THEY DID WELL.
NEMOURS IS THE NAME OF THEIR
FAMILY ESTATE IN FRANCE.
THAT'S WHY THE NEMOURS NAME IS
ATTACHED AND THE HOSPITAL IS
BUILT ON THE GROUNDS.
IF YOU EVER SEE PICTURES OF THE
GROUNDS LIKE I HAVE ON THE RIGHT
HAND CORNER IT'S PATTERNED AFTER
VERSAILLES WITH THE WAVES OF
FOUNTAINS.
THAT'S OUR NEW TOWER SO PATIENTS
CAN TAKE TOURS OF THE GROUNDS
AND LOOK OUT TO THE GROUNDS AND
HAVE A BIT OF A CONVALESCENCE
THERE AND ALFRED DUPONT FELT
IT'S EVERY PERSON'S DUTY IN LIFE
TO REDUCE HUMAN SUFFERING AND
STARTED THIS INSTITUTE WHICH WAS
AN ORTHOPEDIC PEDIATRIC HOSPITAL
AND BECAME A CANCER CENTER AND
IT'S A WORLD LEADER IN
PEDIATRICS AND FREEMAN MILLER IS
THERE WITH A PICTURE STARTED THE
CP PROGRAM WHICH WAS ALWAYS
DESIGN TO BE MULTI-DISCIPLINARY.
HE'S THE AUTHOR OF THE TEXTBOOKS
INCLUDING THE TEXTBOOK FOR
CAREGIVERS.
HE'S CONSIDERED THE GRANDFATHER
OF AMERICAN CEREBRAL PALSY
SURGERY AND SEES OVER 2,000
CHILDREN WITH CP EVERY YEAR AND
DOES SURGERY FROM CHILDREN
AROUND THE COUNTRY AND THE WORLD
AND WHEN HE WAS READY TO RETIRE
HE ASKED ME TO TAKE OVER FOR HIM
AS THE CHAIR OF CEREBRAL PALSY.
THAT'S WHEN MY TRAJECTORY WOUND
UP GOING TO DELAWARE.
A BIG PART OF OUR LEGACY AND
CARE OUR GATE LABORATORY AND
FOUNDING PART OF THE COMMISSION
FOR MOTION LABORATORY
ACCREDITATION AND KINEMATICS AND
WE DO MARKER MOTION CAPTURE.
THAT'S THE WAVE OF THE FUTURE.
THERE ON THE LEFT HAND YOU SEE A
CHILD MARKERED UP AND WE USUALLY
LET THEM DANCE AROUND AND DO FUN
THINGS BUT ON THE RIGHT WE'RE
NOW TRYING TO VALIDATE A MARKER
ALSO MOTION CAPTURE SYSTEM WHICH
WILL BE REVOLUTIONARY FOR THE
FUTURE.
WE'RE PROUD TO BE PART OF THE
FOUNDING MEMBER OF THE CPRN AND
LEADERS IN GCMAS AND FUND FROM
ALL THOSE ORGANIZATIONS AND
FORTUNATE TO HAVE SOME FUNDING
FROM NIH AND PARTNER WITH GUL ET
AND TALKING ABOUT SOME OF THE
RESEARCH WE'RE DOING, AND WHAT
IS PULMONARY FUNCTION.
MANY CHILDREN WITH DISABILITIES
ARE UNABLE TO COMPLETE STANDARD
PULMONARY FUNCTION TEST.
SOME HAVE CO-EXISTING
INTELLECTUAL DISABILITIES AND
KIDS WITH DUCHENNES AND WE KNOW
SCOLIOSIS TREATMENT MAY LEAD TO
INCREASED LONGEVITY BUT IT'S
CONTROVERSIAL BUT WE WANTED TO
COME UP WITH A WAY TO TRY TO
BETTER UNDERSTAND PULMONARY
FUNCTION AND CAME UP ONE THIS
DEVICE A PATENT FROM ONE OF OUR
ENGINEERS.
IT MEASURES THE BREATHING BY
CORRELATING HOW MUCH YOUR
THORACIC BREATHING IS
CONTRIBUTING AND HOW MUCH
ABDOMINAL BREATHING YOU DO.
FOR NORMAL HEALTHY FOLKS IT
SHOULD BE IN THIS ANGLE AND OUT
OF PHASE USUALLY CORRELATES WITH
PULMONARY PATHOLOGY AND DID A
PILOT STUDY WITH KIDS WITH
CEREBRAL PALSY AND THE HEALTHY
KIDS HAD NORMAL LUNG FUNCTION
AND HAD NORMAL WORK BREATHING
AND PHASE ANGLES BUT SAW A IN
OUR KIDS WITH CEREBRAL PALSY.
WE WERE FORTUNATE TO PROCEED
WITH THE STUDY ON THE
NON-INVASIVE MEASURE OF CHILDREN
WITH CEREBRAL PALSY AND RALPH
HASN'T EVEN THE DATA YET WE ARE
FINDING IN THE CEREBRAL PALSY
KIDS WHAT WE FOUND WITH MUSCULAR
DYSTROPHY KIDS IT'S ABLE TO
DISCRIMINATE.
NOW WE'LL TRY TO CONTINUE TO
CORRELATE THAT WITH GMFCS AND
SEE IF THEY CORRELATE WITH THE
MEASURES OF PULMONARY FUNCTION
AND SCOLIOSIS.
IT'S DONE IN THE CLINIC AND
TALKS ABOUT FIVE MINUTES.
THE FEEDBACK FROM THE FAMILIES
IS THE TESTING IS EASILY
TOLERATED.
WE'RE CONTINUING ON RECRUITING
FOR THAT RIGHT NOW.
WE ALSO DO TRANSLATIONAL SCIENCE
WORK IN MUSCLE AND THIS IS LED
BY A PARTNER JASON HOWARD.
MUSCLE AND CP IS NOT SO NORMAL.
WE USED TO THINK MUSCLE WAS
PROBABLY NORMAL BECAUSE IT'S A
NEUROLOGICAL CONDITION.
AND WORK FROM PEOPLE INCLUDING
RICK LIEBER IN CHICAGO WE KNOW
IT'S NOT NORMAL.
WE KNOW OUR JOINTS ARE
CONTRACTED.
WE HAVE KNEE FLEX CONTRACTS BUT
THERE'S INCREASED TISSUE WITH
DECREASED NUMBER OF SATELLITE
CELLS WITH DYSFUNCTION AND
EPIGENTIC ABNORMALITIES AND NOW
THE CONNECTIVE TISSUE IS
COLLAGEN AND YOU SEE THERE'S
INCREASING AMOUNTS OF CROSS
CONNECTIONS OF CABLES BETWEEN
THE TYPE 1 COLLAGEN AND MUSCLE
STIFFNESS INCREASES WITH
COLLAGEN CONTENT.
WE CAME UP WITH THE IDEA MAYBE
THAT COULD BE A TARGET FOR
TREATMENT AND SO WE DID THIS
PILOT STUDY OF COLLAGENASE YOU
CAN SEE US HARVESTING MUSCLE
FIBERS DOING ADD ADDUCTOR
LENGENING SURGERY AND TRYING TO
MEASURE THE STIFFNESS AN SEEING
IF IF THE COLLAGENASE MAKE A
DIFFERENCE AND SAW IT DID.
BEFORE THE COLLAGENASE THE
MUSCLE WAS STIFFER THAN AFTER
AND THINK IT COULD BE A
POTENTIAL NEW TARGET FOR
TREATMENT.
AS A POTENTIAL ALTERNATIVE TO
BOTULINUM INTOXIN WHICH AFFECT
THE MOTOR NEUROJUNCTION.
WE'RE DOING MRE A NOVEL INVASIVE
WAY OF MEASURING THE MUSCLE
PROPERTIES AND TRYING TO
CORRELATE ALL THAT.
THOSE ARE OUR NEXT STEPS THAT
WE'RE WORKING ON AND JASON'S
WORKING ON SOME ADDITIONAL GRANT
APPLICATIONS RIGHT NOW.
WE'RE LOOKING AT CONTINUING TO
GET MORE SAMPLE SIZES AND
EXPLORING THE EPIGENETIC
IMPLICATIONS ON THE MUSCLE WORK
AND THE MOLECULE AND EXPAND OUR
MUSCLE WORK LIKE PHYSICAL
THERAPY AND POTENTIALLY
COLLAGENASE IF IT GOT TO BE A
DELIVERY DEVICE.
SHIFTING GEARS TO TALKING ABOUT
POSTOPERATIVE CARE.
HOW DO YOU MEASURE WALKING
ACTIVITY IN CHILDREN AND
ADOLESCENTS WITH CP?
WE'RE ALL FOCUSSED ON ACTIVITY
AND WE ALL HAVE OUR APPLE
WATCHES AND FITBITS BUT WHAT'S
THE RELIABILITY FOR USING THAT
FOR PERSONS WITH DISABILITIES.
THAT'S WHERE STEP WATCH COMES IN
AND IT'S ON THE ANKLE AND HIGHLY
RELIABLE AND CALIBRATED TO EACH
CHILD'S WALKING PATTERN.
THERE'S BEEN EVIDENCE IN THE
LITERATURE HOW THAT CAN BE USED
IN ORDER TO DETERMINE WALKING
PATTERNS IN CHILDREN AND WE'VE
BEEN ABLE TO VALIDATE A PROTOCOL
TO MEASURE EVERY DAY WALKING
ACTIVITY IN YOUTH WITH CP.
WHEN KIDS GO TO OUR GATE LAB THE
KNOCK IS IT'S ARTIFICIAL YOU'RE
TESTING CHILDREN PUTTING ON
THEIR BEST DOCTORS WALK AND MAY
NOT ALWAYS BE REPRESENTATIVE.
WE DO MULTIPLE PASS TO GET THEM
FATIGUED AND GET THEM THINKING
ABOUT OTHER THINGS OTHER THAN
PUTTING ON THEIR BEST WALK BUT
STILL SENDING KIDS HOME WITH A
STEP WATCH TO MONITOR WHAT
THEY'RE WALKING ACTIVITY IS AND
ABLE TO QUANTIFY THAT AGAINST
THE LEVELS AND INTEGRATED THAT
IN OUR CLINICAL PRACTICE.
YOU SEE THE BLACK LINE IS THE
AVERAGE REFERENCE VALUE FOR
CHILDREN WITH GMFCS AND THIS IS
FOR LEVEL 2 FUNCTION.
YOU CAN SEE THEY'RE DOING QUITE
WELL AND EXCEEDING THE TYPICAL
VALUE AT LEVEL 2 FUNCTION.
WE'RE ABLE TO EXPAND THAT AND
GET INTO THE DETAILS AND
UNDERSTAND HOW WELL KIDS RESUME
THEIR WALKING ACTIVITIES IN THE
POST-OP PERIOD.
HERE'S OUR STUDY LOOKING AT
THAT.
THESE ARE CHILDREN WHO ARE
SINGLE EVENT MULTI-LEVEL SURGERY
AND THEIR GAIT DEVIATION INDEX
OR QUALITY IMPROVED BUT WE
SHOWED THESE KIDS WERE ABLE TO
RECOVER THEIR PRE-OPERATIVE
WALKING LEVEL INDEPENDENT OF THE
LEVEL AND THE RATE OF RECOVERY
WAS AFFECTED BY THE SURGICAL
BURDEN.
LOW BURDEN ORTHOPEDIC SURGERY
WHERE WE'RE ONLY DOING SOFT
TISSUE WORK OR ONE OSTEOMY WERE
EXCEEDING THEIR FUNCTION BY THE
SIX MONTH MARK.
IF WE DO A HIGH BURDEN SURGERY
WHICH WE OFTEN DO AND DO
MULTIPLE OSTEOTOMY AT THE SAME
PERIOD AND IT TAKES THEM NOT
SHOCKINGLY A LONG TIME TO RETURN
TO BASELINE.
12 TO 18 MONTHS TO RETURN TO
BASELINE.
THAT WAS FUNDAMENTAL FOR US TO
START COUNSELLING FAMILIES WHAT
TO EXPECT BECAUSE YOU CAN
IMAGINE IF YOU GET INTO THE
NINE, 10 MONTH RANGE AND
STARTING TO STAGNATE THESE KIDS
CAN OFTEN GET DISCOURAGED BY
THAT.
THIS DATA IS SOMETHING WE HAVE
WITH ALL OF OUR PRE-OPERATIVE
CONSULTATIONS AND BRING IT UP
CONSTANTLY THROUGH THEIR
REHABILITATIVE PERIOD.
WHAT'S OUR FUTURE PLANS FOR WALK
RESEARCH?
HIP SURVEILLANCE IS WELL
ESTABLISHED IN CEREBRAL PALSY TO
DECREASE THE RATES OF HIP
DISLOCATION AND DECREASE CHRONIC
HIP PAIN.
OUR IDEA IS TO EXPAND THE
WALKING ACTIVITY RESEARCH INTO
KNEE SURVEILLANCE AND CORRELATE
THE KNEE FLEXION CONTRACT URE
AND LOOKING TO LAUNCH A
PROSPECTIVE PILOT STUDY THIS
YEAR.
ALSO VERY PROUD OF ADULT
RESEARCH.
WE'RE FINDING LOTS OF ISSUES AND
CONCERNS CAN ABOUT WHAT HAPPENED
TO OUR ADULTS WITH CP TO OUR
ADOLESCENTS WITH CP ONCE THEY
REACH ADULTHOOD.
WE SEE MOBILITY TO CLIMB IS
COMMON.
WE SEE THERE'S COMMON COMPLAINTS
OF PAIN AND IF YOU LOOK AT THE
REVISED NEW PLOTS IF YOU LOOK AT
THE RIGHT HAND ASPECT OF THIS
PLOT, ALMOST ALL THE GMFCS
LEVELS DECREASE AND FUNCTION IN
LATE ADOLESCENCE AND EARLY
ADULTHOOD BY MEASURED BY GFM66
AND HAVE SEEN THAT CLINICALLY
AND GLAD TO SEE IT VALIDATED BUT
THERE'S BIG CONCERNS ABOUT THAT
AND WE'RE FORTUNATE.
DR. MILLER WAS PERSISTENT ABOUT
DOING GAIT ANALYSIS IN
ADOLESCENCE AND WE HAVE ADULTS
IN THEIR 30s AND 40s THAT
CONTINUE TO COME BACK TO OUR
GAIT LAB TO COMPARE RESULTS.
WE REALIZE THIS CONTRIBUTED TO
THE KNOWLEDGE BASE AND HERE'S
OUR FINDINGS.
THE BLUE PLOTS ARE THEIR
ADOLESCENT MEAN VALUES AND RED
IS ADULT MEAN VALUES AND YOU CAN
SEE THE GAIT INDEX I MENTIONED
BEFORE IS ACTUALLY STABLE INTO
THEIR SECOND, THIRD AND FOURTH
DECADES.
IN THIS POPULATION THEY REALLY
DIDN'T LOSE A LOT OF FUNCTION IN
TERMS OF MEASURED.
WE WERE PLEASED BY THAT.
MAYBE THAT'S BECAUSE WE WERE SO
PROACTIVE AND THEY'RE HAPPY FOR
THEM TO KEEP COMING BACK IN
THEIR ADULT TIME FRAMES.
WE LOOKED AT PROMISE IN THE
GROUP AND THE PAIN INTERFERENCE
WAS SLIGHTLY HIGHER THAN THE
NORMATIVE VALUES AND THE
PREVALENCE OF MODERATE TO SEVERE
WAS HIGH AT 36%.
CONSISTENT ONE THE OTHER VALUES
THAT'S LITERATURE.
AND THEN WHEN WE LOOKED AT
WALKING ACTIVITY AND WE SEE THEY
ACTUALLY LOSE GROUND IN THEIR
WALKING ACTIVITY THOUGH IN THE
GAIT LAB THEY HAD CAPACITY TO
MAINTAIN THEIR GAIT INDEXES AND
THEIR GFMMs AND THAT HAPPENS IN
TYPICALLY DEVELOPED ADULTS.
THEY'RE NOT AS ACTIVE IN THEIR
20s OR 30s OR 40s AS TEEN AGE
YEARS AND THAT'S SIMILAR BUT THE
PHYSICAL FUNCTION AS MEASURED BY
WALKING ACTIVITY IS CORRELATED
ONE GMFCS AS WE SEE IN THE
MUSCLES.
ONE THING WE'RE EXCITED TO SEE
AND TO MEASURE IN THE
SELF-REPORTED OUTCOMES WITH
ADULTS WITH CP WAS THAT WE
NOTICED DEPRESSION WASN'T
DIFFERENT THAN AGE MAP CONTROL
GROUPS AND COLLEGE EDUCATION
LEVELS WERE ALSO SIMILAR.
HOWEVER, THIS WAS THE BIG
DIFFERENCE.
EMPLOYMENT WAS LOWER IN OUR
ADULT COHORT GROUP THAN
TYPICALLY DEVELOPED AND RATES OF
DISABILITY INSURANCE WAS HIGHER.
WE KNOW WE DIDN'T CONTROL VERY
WELL INTELLECTUAL DISABILITY AS
A CONFOUNDING VARIABLE AND WE
KNOW IT'S TIME FOR TO US REDO
THAT STUDY AND WE'RE WORKING ON
TRYING TO COME UP ONE WAYS TO
CONTROL FOR THAT BUT STILL WE
FELT EMPLOYMENT OPPORTUNITIES
ARE LESS FOR THIS POPULATION
WHICH IS DIFFERENT WHERE THE
EDUCATIONAL OPPORTUNITIES ARE
PROBABLY STILL QUITE EQUAL.
THAT'S OUR NEXT STEP TO CONTINUE
WITH THE COHORT ANALYSIS AND TRY
TO CONTROL FOR THAT BETTER.
SO, GETTING BACK TO MY OWN
PERSONAL JOURNEY, BETWEEN MY TWO
CHILDREN, THEY HAVE HAD NEARLY
EVERY ORTHOPEDIC SURGICAL
PROCEDURE WE PERFORM IN THE
POPULATION AND THE TWO X-RAY MY
KIDS' X-RAYS.
AND UNFACT BENJAMIN MY OLD ARE
SON HAD AN ORTHOPEDIC SURGERY
WEEKS AGO.
AND SO I TRIED TO SHARE THOSE
EXPERIENCES WITH MY FAMILIES.
I REALLY TRY TO SURE THOSE
EXPERIENCES AS A FATHER AND
SURGEON AND TELL THEM HOW IT
WENT FOR ME.
I TELL THEM WHAT I WAS GLAD I
DID AND TELL THEM SOME OF MY
REGRETS ABOUT THINGS I DIDN'T DO
OR THINGS I DID DO.
I TRY TO ANSWER THE QUESTIONS
THAT I HAD WHEN WE WERE MAKING
DECISIONS ABOUT THE SURGICAL
PATHWAYS WE WOULD CHOOSE.
BUT STILL I WOULD HAVE TO SAY
THAT EVERY TIME WE EXPERIENCE A
NEW CURVEBALL WE'RE NOT THAT
WELL PREPARED FOR IT.
AND I'M PROBABLY THE MOST
INFORMED DAD/PEDIATRIC SURGEON
ON THE PLANET BUT STILL NOT
PREPARED FOR ALL THE THINGS I
THINK I'M PREPARED FOR.
WE'RE NOT PREPARED FOR IT
PHYSICALLY, WARE NOT PREPARED
FOR IT EMOTIONALLY OR
PSYCHOLOGICALLY.
SO THAT'S WHERE I REALLY MADE A
DECISION WE WERE GOING TO TRY TO
MAKE A BIG EMPHASIS ON THE BIO
PSYCHOSOCIAL MODEL OF CP.
THIS IS A REVIEW ARTICLE FROM
THE AMERICAN ORTHOPEDIC
ASSOCIATION LOOKING THAT THE BIO
PSYCHOSOCIAL MODEL OF ADULT
ORTHOPEDIC ISSUES LIKE HIP
REPLACEMENTS AND CARPAL TUNNEL
AND THE OUTCOMES WE MEASURE ARE
DRUTH HAVE ANN INTERSECTION OF
BIOLOGY AND PSYCHOLOGY AND THE
SOCIAL DERNTERMINATES OF HEALTH
AND IF I DO THIS GREAT SURGERY
AND SEND A KID HOME TO A TOUGH
HOME ENVIRONMENT THAT WE HAVE
NOT PROPERLY ADDRESSED THEIR
NEEDS IT'S PROBABLY NOT GOING TO
BE A GOOD OUTCOME AND WE NEED TO
SHIFT OUR GEARS ON THAT.
AND PETER ROSENBAUM IS A FORMER
PRESIDENT OF ACFF AND OF COURSE
HE TALKS ABOUT THE ICF AND HOW
ENVIRONMENT MATTERS.
BUT FOR THE CHILD FOR CHILDREN,
THE FAMILY IS THE MAIN
ENVIRONMENT.
OVER ALL THESE FAMILIES AS A
WHOLE THEIR WELL BEING IS
IMPAIRED.
OUR WELL BEING AS A FAMILY HAS
BEEN IMPAIRED AT TIMES AS WE
LEARN WITH COPE WITH HAVING
CHILDREN AND FAMILY MEMBERS WITH
DISABILITIES.
PETER SAYS FAMILY-CENTERED CARE
SHOULD ADDRESS THE NEEDS OF THE
FAMILIES.
MAYBE THAT'S MORE IMPORTANT THAN
THE MEDICINE OR SURGERY THAT WE
DO.
THAT BRINGS US TO THIS.
I MADE A DECISION IN WORKING
WITH A CLINICAL PSYCHOLOGIST
HERE AND WE KNOW I MADE THIS
ARGUMENT WE KNOW CP HAS
SIGNIFICANT CHALLENGES TO
FAMILIES AND HAVE INCREASED
STRESS AND POOR MENTAL
FUNCTIONING AND WE'RE NOT
ADDRESSING THESE NEEDS.
SO ANN HAD CREATED THIS
PSYCHOSOCIAL ASSESSMENT TOOL
THAT HAS BEEN INSTRUMENTAL IN
ADDRESSING THE NEEDS IN THE
ONCOLOGY POPULATION AND
PEDIATRIC HEART DISEASE AS WELL.
IT ADDRESSES POTENTIAL STRESSORS
AND CATEGORIZES FAMILIES TO
THREE DIFFERENT LEVELS OF RISK
ACCORDING TO THE PEDIATRIC
PSYCHOSOCIAL MOLE.
I SAID WE HAVE TO DO THIS IN CP.
SO WE PULLED TOGETHER SOME
FUNDING AND CREATED A POSTDOC
POSITION IN PSYCHOLOGY AND CP
EMBEDDED IN OUR CLUBBIC AND SO
OUR GOAL IS TO CREATE THIS
PSYCHOSOCIAL SCREENING TO DO
IDENTIFICATION OF FAMILIES MOST
AT NEED AND HOPEFULLY COME UP
WITH THE APPROPRIATE ALLOCATION
OF RESOURCES.
AND IT'S REALLY IMPORTANT THAT
WE BRING TOGETHER STAKEHOLDERS,
CAREGIVERS AS WELL AS HEALTH
CARE PROVIDERS TO MAKE SURE WE
ARE GETTING ALL THE VOICES OF
THE PATIENTS AN CAREGIVERS
HIGHLIGHTED IN THIS ADAPTATION
PROCESS AND THAT'S WHERE WE ARE.
WE'VE DONE OUR FIRST STUDY AND
HAVE DONE A SYSTEMATIC
LITERATURE REVIEW AND HAD
QUALITATIVE INTERVIEWS WITH
MULTI-DISCIPLINARY HEALTH CARE
PROVIDERS TO MODIFY THE PATH TO
THE CP-PAT AND BROUGHT IN
CHALLENGES THAT WEREN'T IN THE
CARDIAC AND ONCOLOGY POPULATION
AND MOTOR CHALLENGING AND
MEDICAL COMPLEXITIES AND SOCIAL
DETERMINATES OF HATH.
AND NEXT STEPS IN IMPLEMENTING
THE PAT-CP WE HOPE TO DEVELOP
THE DELIVERY OF THE
EVIDENCE-BASED PSYCHOSOCIAL CARE
AND WE LOOK AT OUTCOMES OF
SURGERY BUT I'M MOSTLY EXCITED
ABOUT THIS BECAUSE IF WE COULD
COME UP WITH THIS TO SCREEN FOR
THIS LIKE WE SCREENED FOR HIP
PATHOLOGY OR FOR OTHER THINGS, I
THINK THIS COULD MAKE A BIG
IMPACT IN OUR FAMILIES.
IN ADDITION WE HOPE TO BETTER
UNDERSTAND THE IMPACTS OF SOCIAL
DETERMINATES OF HATH AND RACIAL
DISCRIMINATION AND HOW THE KIDS
DO.
I WANT TO THANK YOU FOR
LISTENING TO OUR JOURNEY, MY
FAMILY'SYY -- JOURNEY FROM NASA
TO ACPDM.
WON'T STEAL THE THUNDER FOR THIS
AFTERNOON BUT I'VE TAKEN MORE
THAN I'VE GIVEN.
I'VE LEARNED MORE AND I'M A
BETTER RESEARCHER AND PHYSICIAN
BECAUSE OF SERVING ON THE
ADVISORY BOARD AND I'M PROUD OF
OUR WORK HERE AND PROUD WE'RE
CONTINUING TO IMPROVE THE LIVES
OF CHILDREN WITH DISABILITIES
AND THEIR FAMILIES AND IMPROVING
THE TRANSITION TO ADULTHOOD AND
PROUD TO HAVE BEEN A PART OF
NICHD AND NIH AND PROUD OF THE
WORK WE'RE DOING.
THIS IS A FAVORITE QUOTE OF MINE
FROM FDR RALPH SAW IT IN MY
ADDRESS.
WE'RE IN THE HOPE BUSINESS.
WE'RE TAKING CARE OF CHILDREN
AND THEIR DISABILITIES AND
FAMILIES AND TRYING TO GIVE THEM
HOPE FOR THE TRAJECTORY OF THEIR
LIFE.
I THINK WE DO THAT AND IT'S A
GREAT WORTHY CAREER FOR ALL OF
US AND I LOVE THE QUOTE, WE HAVE
HEADLINE TO THE HOPE AND BELIEF
AND CONVICTION THERE'S A BETTER
LIFE AND BETTER WORLD BEYOND THE
HORIZON.
THANK YOU.
>> WADE, THANK YOU SO MUCH FOR
SHARING YOUR PERSONAL AND
PROFESSIONAL JOURNEY WITH US.
I REALLY APPRECIATE IT.
YES, THANK YOU.
IT'S HARD NOT TO BE ABLE TO
RESPOND AS WE WOULD HAVE IN
PERSON.
VERY MOVED BY THE WHOLE STORY.
OPEN FOR QUESTIONS.
COLLEAGUES?
PEPE.
>> THANK YOU.
AS A PARENT, I'D LIKE TO KNOW
WHAT TECHNOLOGICAL FACILITATION
YOU HAVE USED AND INTERESTED IN
ANY YOU HAVE TRIED.
>> THANK YOU.
THE BOYS ARE NOW 27 AND 25 YEARS
AGO THE TECHNOLOGIES WE HAD IN
ALLOWING THEM TO TRY TO DO AND
THERE WERE SOME EXOSKELETONS
COMING OUT BUT NOT LIKE NOW.
I REMEMBER THE FIRST TIME WE SAW
A GAIT TRAINER.
THAT WAS FUNDAMENTAL BECAUSE
MASON IS A 2/3 AND USES CRUTCHES
A BIT AND BENJAMIN IS MORE OF A
SOLID 4 BUT HAS LOST FUNCTION
INTO ADULTHOOD AND ALMOST MORE
OF A 5.
HE STILL GETS INTO A STANDER NOW
AND THEN.
HE STRUGGLED TO GET INTO A
REVERSE WALKER.
HE DIDN'T HAVE THE TRUNK CONTROL
FOR THAT.
THE FIRST TIME HE WAS OLDER AND
HAD A GAIT TRAINER WAS
FUNDAMENTAL.
I REMEMBER LOOKING AT THAT AND
THINKING THAT'S SIMPLE THING AND
NOT REALLY TECHNOLOGY BUT A GAIT
TRAINER.
I WISH I WOULD HAVE HAD THIS
WHEN HE WAS 3.
AND HERE I AM HE WAS 7 OR 8 AND
I WAS PRACTICING AS AN
ORTHOPEDIC SURGEON THEN AND I
LOOK AT THE EXOSKELETONS NOW AND
I ADVOCATE FOR THEM FOR OUR
FAMILIES.
I KNOW THEY'RE EXPENSIVE AND
HARD TO COME BY.
WHEN I MEET WITH INDUSTRY
REPRESENTATIVES I ENCOURAGE THEM
TO DO MORE RESEARCH, EVEN SMALL
CASE STUDIES TO SHOW IS TO
DEMONSTRATE TO THE PAYERS THIS
IS A POTENTIAL IMPORTANCE.
I SAY ALL THE TIME I TAKE CARE
OF GMFC4s AND THEY LOSE THE
ABILITY TO DO STANDING AND
STANDING PIVOT AND STEPS IN THE
HOUSE AND THAT IS HUGE.
THAT'S KIND OF HARD TO TEASE OUT
WITH THE EARLY ROBOTICS AND
STANDERS AND DEBATE TRAINERS AND
THE IMPORTANT TECHNOLOGY WE'VE
ENCOUNTERED AND WE'RE FORTUNATE
AND BEING ABLE TO GET ON AN iPAD
AND WORKS ON THE STATE COUNCIL
FOR CITIZENS WITH DISABILITIES
AND THE iPAD REALLY HAS BEEN THE
BIGGEST PIECE OF TECHNOLOGY FOR
HIM.
>> THANK YOU SO MUCH FOR SHARING
THAT WITH US.
>> THANKS, WADE FOR A COMPELLING
TALK.
I'VE NEVER KNOWN SO MUCH ABOUT
NASA FLIGHT MECHANICS.
>> I THOUGHT IT WOULD BE FUN.
I HAD FUN LOOKING IT UP.
>> WE'RE NOW COCKTAIL PARTY
EXPERTS.
SO COMPELLING, THANK YOU.
I WANTED TO ASK YOUR THOUGHTS ON
SORT OF THE READINESS OF THE
CLINICAL COMMUNITY TO THINK
OUTSIDE OF THAT MEDICAL MODEL
BOX WITHIN YOUR FIELD.
WITHIN ORTHOAND PARTICULARLY IN
THE SURGICAL AND PROCEDURAL SIDE
BECAUSE I COULDN'T AGREE MORE
THE SOCIAL DETERMINATES AND THE
ENVIRONMENTAL CONTEXT THESE KIDS
GROW UP IN IS 80% OF WHAT LEADS
TO SUCCESS OR NOT.
BECAUSE YOU CAN TAKE SOMEONE
WITH A LOW LEVEL OF FUNCTION AND
ADAPT AND IF THE FAMILY
ENVIRONMENT AND ENVIRONMENT IS
RIGHT THEY CAN SUCCEED.
THAT'S WHY I SHARED THE PICTURE
OF MY MOM YESTERDAY.
SHE WAS THE ONE THAT BLOCKED AND
TACKLE AND TOLD EVERYBODY IN THE
COMMUNITY MAKE SURE YOU TREAT
HER LIKE EVERY OTHER KID.
WHEN YOU TALK ABOUT THE IMPACT
OF THE SOCIAL DETERMINATES OF
HATH AND HOW IS THAT RECEIVED?
DO YOU FEEL IMPLEMENTATION OF A
SCALE LIKE THAT WOULD REQUIRE A
LOT OF EDUCATION AND CULTURE
CHANGE IN THE FIELD TO BE
SUCCESSFUL?
>> YOU'RE EXACTLY RIGHT ON.
YOU HIT THE NAIL ON THE HEAD.
I DON'T THINK THE SURGICAL AND
PROCEDURAL RELATED FIELDS ARE
READY FOR THAT.
THEY THINK WHEN ALL YOU'VE GOT
IS A HAMMER EVERYTHING LOOKS
LIKE A NAIL.
THE THINK WHAT THEY'RE DOING AND
HAVE AN INMATE BELIEF THAT WHAT
WE ARE DOING IS MAKING A
DIFFERENCE.
I'VE DONE PERFECT SURGICAL
PROCEDURES CHILDREN HAVE GONE
HOME TO A TOUGH ENVIRONMENT AND
WE THOUGHT WE SCREENED FOR THAT
AHEAD OF TIME BUT DIDN'T SCREEN
IN THE RIGHT WAY AND THOSE
CHILDREN GOT WORSE
POST-OPERATIVELY.
I FEEL LIKE IT'S MY MISSION TO
TWO IN THE PEDIATRIC, OTHER
PEDIATRIC COMMUNITY AND TALK
ABOUT BIAS AND I BRING UP THE
ISSUE EVERY TIME.
AND THERE ARE SNIPPETS IN
ORTHOPEDICS AS I SHOWED YOU IN
ADULT ORTHOPEDICS IT'S CATCHING
FIRE.
I'M CONTINUING TO TRY TO BRING
THAT INTO THE
PEDIATRIC/ORTHOPEDIC SPACE.
I THINK IT'S A BIT OF A
CHALLENGE NOW.
>> NOW FOR YOUR WORK.
>> THANK YOU.
RALPH.
>> FIRST OF ALL, THANKS.
A LOT OF IMPORTANT PERSPECTIVES.
I APPRECIATE YOU TALKING ABOUT
THE ARTFICIALITY AND IT MAY BE A
DELICATE BALANCE WHEN YOU DEAL
WITH ANXIOUS PARENTS TO TRY TO
NOT GET THEM TO BE OVER
PROTECTIVE AND GET THEM TO
CONTINUALLY MOTIVATE AND
CHALLENGE THEIR KIDS.
SO I WANT YOU TO TALK ABOUT THAT
AND HOW IMPORTANT IS IT THEY
HAVE SIBLINGS OR FRIENDS THAT
ALSO TAKE THEM OUT TO ATHLETIC
FIELDS AND ACTIVITIES AND THINGS
LIKE THAT AND HAVE THIS NOTION
YOU COULD CIRCLE BACK TO YOUR
NASA CAREER OUT IN ZERO G
ENVIRONMENT THESE FOLKS WOULD
HAVE AN ADVANTAGE.
I'M MORE IF THE FIRST TWO
QUESTIONS.
>> GREAT QUESTIONS, RALPH.
I THINK IT'S FASCINATING WHEN
YOU SEE HOW DIFFERENT FAMILIES
APPROACH THE DISABILITY.
SOME FAMILIES ARE LIKE INSURE
-- LIKE SHERRY'S WHO WILL PLOW
THE ROAD AND MAKE SURE THEIR
CHILDREN ARE INCLUDED AND HAVE
GREAT OPPORTUNITIES.
SOME FAMILIES STICK HER HEAD IN
THE SAND A LITTLE BIT AND ACT
LIKE MAYBE NOTHING'S WRONG AND
MAYBE THEIR CHILD IS JUST A
LITTLE BIT DIFFERENT WHICH IS
GREAT IN SOME WAYS BUT IF YOUR
NOT OUT THERE ADVOCATING AND
TRYING TO MAKE SURE YOU'RE
TAKING ADVANTAGE OF THE
ENVIRONMENT, YOU'RE PROBABLY
GOING TO LOSE OUT AND THAT
INCLUDES THERAPIES, INCLUDES
SEEING OTHER TYPES OF
PHYSICIANS, IT INCLUDES SOME
TECHNOLOGY PEPE MENTIONED.
STRIKING THAT BALANCE IS
INTERESTING.
I DO THINK THERE'S SO MUCH WE
CAN DO WITH THE PSYCHOSOCIAL
ASSESSMENT.
I THINK SOME FAMILIES ARE MORE
RECEPTIVE TO A HEAD ON
CONVERSATION ABOUT THAT AND SOME
ARE MORE RECEPTIVE TO SOMETHING
MORE SUBTLE.
YOUR LAST QUESTION IT'S BURNED
IN MY BRAIN.
I REALIZED I MISSED ANOTHER
THING I COULD CORRELATE NASA
WITH WHAT WITH WE DO.
WE DO A LOT OF COOL THERAPY.
BUOYANCY TYPE THINGS WHICH IS
HOW ASTRONAUTS TRAIN FOR SPACE
IN THE POOL.
IN THE REHAB PROGRAM WE DO A LOT
OF THAT.
IN FACT I WROTE A BIG LETTER
YESTERDAY MAKE SURE WE KEEP OUR
POOL OPEN.
THERE'S THE NEW TECHNOLOGY OF
THE ZERO G YOU HAVE A SUSPENSION
SYSTEM TO DIAL IN WEIGHT BEARING
POST-OPERATIVELY.
WE DO THAT.
I MISSED A COUPLE OPPORTUNITIES
TO TRY TO BRING IN THE ZERO G
THING AND WHAT WAS THE MIDDLE
QUESTION.
SORRY, I GOT LOST.
>> I WAS ASKING HOW MUCH IT
HELPS TO HAVE SIBS.
>> SIBLINGS IS IMPORTANT.
MY DAUGHTER WOULD KILL ME.
THE SIBLING TRAJECTORY IS
INTERESTING.
MOST HAVE ALSO STRONG COMPONENTS
OF THE FAMILY.
MY DAUGHTER HAS GONE ON TO BE A
PEDIATRIC OCCUPATIONAL
THERAPIST.
SHE'S IN A SCHOOL FOR CHILDREN
WITH CEREBRAL PALSY.
SHE LAUNCHED SIBLING GROUPS AN
WROTE THE SIBLING CHAPTER IN
FREEMAN'S LAST BOOK.
FOR HER, HER LIFE HAS ALWAYS
BEEN AROUND CP AND IN A WAY WE
ALSO TALKED A LITTLE BIT ABOUT
HOW IT WAS HER OWN DISABILITY
BECAUSE SHE SACRIFICED SOME
THINGS BECAUSE SHE WAS IN
THERAPY WITH THE BOYS BECAUSE
SHE HAD TO GO ALONG.
I THINK A HEALTHY SIBLING
RELATIONSHIP IS INCREDIBLY
IMPORTANT.
AS YOU SAID TO BRING IN THE KIDS
ON TO MORE NORMATIVE CHILDHOOD
AND ADOLESCENT EXPERIENCES AND
WE HAVE A SIBLING ASSESSMENT AS
PART OF THAT CP PAT AND I THINK
WE'LL ABLE TO DIG NA THAT AS
WELL.
DIG INTO THAT AS WELL.
>> THANK YOU, WADE FOR A MOVING
PRESENTATION AND DIALOGUE.
RALPH, I THINK WE'LL TURN IT
BACK OVER TO YOU AT THIS POINT.
>> I'LL INTRODUCE THE NEXT
SECTION.
MY NICHD COLLEAGUE AMANDA ALISE
PRICE AND I HAVE TO USE HER
MIDDLE NAME BECAUSE WE HAD
ANOTHER AMANDA PRICE.
SHE BECAME THE DIRECTOR OF THE
OFFICE OF HEALTH EQUITY AS WELL
AS AN NICHD CHIEF SCIENTIFIC
DIVERSITY IN APRIL OF '23 AND
LEADS THE EFFORT TO SHAPE THE
INSTITUTE'S VISION FOR
DIVERSITY, EQUITY AND ,
INCLUSION AND ACCESSIBILITY AND
LEADS STRATEGY TO ENRICH
INCLUSION AND ACHIEVE EQUITY
WHICH WE MORPHED INTO STRIVE.
THE STRIVE INITIATIVE YOU HEARD
ABOUT IN SOME PREVIOUS MEETINGS
AND GUIDING IT INTO AN
IMPLEMENTATION FOLLOWING THE
FINALIZATION OF OUR STRIVE
ACTION PLAN AND PROVIDES US WITH
GUIDANCE AND SERVES AS OUR
AUTHORITY ON HEALTH EQUITY
RESEARCH ON THE EXTRAMURAL AND
INTRAMURAL PROGRAMS AND HER
PREVIOUS WORK FOCUSSED ON
HEALTHY LIFESTYLE BEHAVIORS AND
HAS A Ph.D. IN EXERCISE SCIENCE
AND WE APPRECIATE HER COMING
HERE AND GIVING US UPDATE ON HER
OFFICE AND CHALLENGE AND HER
VISION AND SO ON.
AMANDA.
>> THANK YOU FOR THE
INTRODUCTION, RALPH.
I WANT TO HIGHLIGHT I'M AN
EXERCISE PHYSIOLOGIST BY
TRAINING AND SHARE THE PASSION
AND UNDERSTAND THE VALUE OF
REHABILITATIVE MEDICINE.
THANK YOU FOR HAVING ME HERE.
I'M GOING TO GIVE YOU AN
OVERVIEW OF THE OFFICE OF HEALTH
EQUITY AND TALK ABOUT OUR
MISSION PRIORITIES AS WELL AS
ACTIVITY.
I'M GOING TO HIGHLIGHT A FEW OF
OUR DIVERSITY, EQUITY, INCLUSION
AND ACCESSIBILITY ACTIVITIES AT
NICHD.
AS WELL AS EFFORTS AND
ENGAGEMENT.
WE'LL START WITH THE MISSION OF
OFFICE OF HEALTH EQUITY TO SERVE
AS A CATALYST TO STRENGTHEN THE
INSTITUTE'S COMMITMENT TO
ENSURING THE HEALTH AND WELL
BEING OF ALL CHILDREN, ADULTS,
FAMILIES AND COMMUNITIES.
WE FOCUS ON THREE MAIN AIMS YOU
CAN SEE ON THE GEARS ON THE LEFT
THOSE ARE TO ADVANCE DIVERSITY,
EQUITY AND INCLUSION AND ACCESS
ACT IN THE WORK WE DO AT NICHD
AND THAT PERTAINS TO THE IN
PERSONAL WORKFORCE AS WELL AS
WHAT I CALL THE INTERNAL
WORKINGS OF THE INSTITUTE.
SO OUR ACTIVITIES PROGRAMS
INITIATIVES POLICIES AND SO ON.
WE ALSO LOOK IN OUR SCIENTIFIC
WORKFORCE DIVERSITY AND WORK
WITH THE EXTRAMURAL AND
INTRAMURAL DIVISION ON THAT AS
WELL AS THINKING ABOUT OUR
INTERNAL WORKFORCE.
WE ALSO DIRECT HEALTH
DISPARITIES IN HEALTH EQUITY
RESEARCH AT THE INSTITUTE.
OUR WEBSITES ARE THERE ON THE
BOTTOM RIGHT.
AND WE ARE WORKING ON A NEW
WEBSITE LANDING PAGE THAT'S
GOING TO BE CALLED RESEARCH TO
SUPPORT OUR EFFORTS AS WELL.
I'VE BEEN BUSY OVER THE PAST
YEAR.
IT STARTED WITH JUST ME LAST
APRIL AND I'VE BEEN ABLE TO
BRING ON SEVERAL LOVELY TEAM
MEMBERS.
OUR STRUCTURE IS TO HAVE AN
EXTRAMURAL AND INTRAMURAL
LIAISON AND THEY SUPPORT DIRECT
OUTREACH AND ENGAGEMENT AS WELL
AS INTERNAL WORKFORCE
DEVELOPMENT.
WE ALSO HAVE A PROGRAM ANALYST
WE'RE HIRING TO SUPPORT
ACTIVITIES ACROSS THE BOARD.
WE HAVE THE PLEASURE OF WORKING
WITH TRAINEES AND FELLOWS AND
STUDENTS IN OUR OFFICE THAT
ALLOWS US TO DIRECTLY SUPPORT
DIVERSITY IN ADDITION TO OUR
BROADER NICHD INITIATIVES AND
HAVE CONTRACT SUPPORT THAT
SUPPORT OUR OFFICE AND WORK WITH
OUR COUNCIL WHICH IS A GROUP OF
EMPLOYEES ACROSS NICHD THAT HELP
US IMPLEMENT OUR ACTIVITIES AND
GOALS AND ENSURE THE VOICE OF
THE STAFF HERE AT NICHD IS
INCORPORATED IN EVERYTHING WE
DO.
RALPH MENTIONED THE STRIVE
PROGRAM.
IT EXIST ED TO 2023 AND
CULMINATED IN THE STRIVE ACTION
PLAN.
IT WAS A GROUP OF APPROXIMATELY
60 EMPLOYEES SPLIT BETWEEN THE
DEIA COMMITTEE, SCIENTIFIC
WORKFORCE DIVERSITY COMMITTEE
AND DEVELOPED GOALS TO SHAPE THE
PRIORITIES OF OUR OFFICE AND THE
STRIVE ACTION PLAN IS AN OVER40
PAGE DOCUMENT WITH PLENTY OF
GOALS, ACTIVITIES AND METRICS
FOR US TO WORK ON AS AN
INSTITUTE UNDER THE DIRECTION OF
THE OFFICE OF HEALTH EQUITY.
THE STRIVE PROGRAM WAS ALSO WHAT
PROVIDED THE SUPPORT FOR HIRING
A CHIEF SCIENTIFIC DIVERSITY
OFFICER AND ESTABLISHING THE
OFFICE OF HEALTH EQUITY IN THE
FORM IT IS NOW.
I'LL GIVE YOU AN OVERVIEW OF THE
ACTIVITIES OF THE OFFICE OF
HEALTH EQUITY.
WE FOCUSSED ON THREE MAIN
BUCKETS OF WORKING WITH OUR
EXTRAMURAL DIVISION AND
INTRAMURAL DIVISION AS WELL AS
OUR INTERNAL WORKFORCE.
WE HAVE A SHARED PRIORITY OF
OUTREACH AND ENGAGEMENT ACROSS
ALL THE WORK THEY DO AND THINK
OF HOW TO GET A GREATER NUMBER
OF STAFF AND EMPLOYEES ENGAGED
IN THE WORK WE DO.
HOW CAN WE INCREASE THE
AWARENESS AND PARTICIPATION IN
OUR OPPORTUNITIES BY THE
EXTRAMURAL COMMUNITY AND THE
GREATER SCIENTIFIC COMMUNITY AND
ALSO HOW CAN WE THINK ABOUT
EXPANDING THE WORK WE DO IN THE
INTRAMURAL SIDE AND THE TRAINEES
WE BRING IN ON THE INTRAMURAL
SIDE.
TO GIVE YOU A FEW EXAMPLES OF
THE WORK WE'RE DOING ON THE
EXTRAMURAL SIDE.
WE HOLD REGULAR MEETINGS WITH
EXTRAMURAL LEADERSHIP AND
ACTIVITIES AND WE WORK TO
STRATEGIZE HOW BEST TO SUPPORT
THE SCIENTIFIC WORKFORCE
PARTICULARLY ACROSS OUR
EXTRAMURAL PROGRAMS.
WE HAVE MOST RECENTLY BEEN
WORKING ON A SIGN ON AND
MANAGEMENT PROCESS.
THERE'S FUNDING OPPORTUNITIES
THAT FOCUS ON HEALTH REQUEST AND
DIVERSITY AND RESOURCE
INFRASTRUCTURE MORE BROADLY.
WE'VE ALSO BEEN WORKING WITH OUR
DIVERSITY WORKING GROUP AS WELL
AS THE OFFICE OF EXTRAMURAL
POLICY TO BETTER SUPPORT OUR
DIVERSITY SUPPLEMENT SCHOLARS
AND HAVE BEEN WORKING WITH OUR
NEWLY FORMED OFFICE OF CLINICAL
RESEARCH TO PARTNER ON
RESOURCES, BEST PRACTICES AND
GUIDANCE RELATED TO ENGAGEMENT
AND UNCOLLUSION IN RESEARCH.
-- AND INCLUSION ON RESEARCH.
TO GIVE YOU A LITTLE MORE DETAIL
WITH THE OFFICE OF EXTRAMURAL
POLICY AS IT RELATES TO OUR
DIVERSITY SUPPLEMENT PROGRAM, WE
ARE WORKING ON CREATING AN
ONBOARDING WORKSHOP TO LEVEL THE
PLAYING FIELD OR LEVEL THE START
IS FOR ALL OF OUR RECIPIENTS SO
THAT THEY ARE AWARE OF THE
RESOURCES WE HAVE AT NICHD.
THEY ARE SET UP FOR SUCCESS IN
THEIR MENTORING PLANS AND
INDIVIDUAL DEVELOPMENT PLANS,
THEY WILL -- ARE THINKING WHAT
ARE THE NEXT STEPS AND LOOKING
TO HOST OPEN OFFICE HOURS TO
ALLOW PEOPLE TO DROP IN AND ASK
QUESTIONS AT ANY TIME.
WE'RE ALSO LOOKING TO DO LONG
TERM TRACKING OF OUR DIVERSITY
SUPPLEMENT PROGRAM RECIPIENTS TO
INFORM THE PROGRAMS WE
PARTICIPATE AND ENSURE WE ARE
SUPPORTING OUR EXTRAMURAL
WORKFORCE IN THE WAYS THAT SUIT
THEM AS WELL AS US.
WE ARE ALSO WE STRADDLE THE LINE
BETWEEN SUPPORTING PEOPLE
EXTERNAL TO THE INSTITUTE AS
WELL AS INTERNALLY.
WE'RE ALSO WORKING ON MATERIALS
FOR OUR PROGRAM OFFICERS TO BE
ABLE TO SUPPORT THIS PROGRAM AND
MAKE IT EASIER FOR THEM TO
PARTICIPATE IN ADDITION TO
WORKING ON A COMMUNICATION
STRATEGY THAT GETS THE WORD OUT
ABOUT THE DIVERSITY SUPPLEMENT
PROGRAM.
WE'RE ALSO WORKING WITH OUR
OFFICE OF CLINICAL RESEARCH TO
PARTNER WITH THEM TO DEVELOP
THINGS LIKE NOFO LANGUAGE IN
ORDER TO EXPRESS OUR INTEREST IN
INCLUDING PATIENT AND COMMUNITY
ENGAGEMENT AND INCREASING
REPRESENTATION IN RESEARCH
STUDY.
ALSO TO IDENTIFY BEST PRACTICES
FOR SUPPORTING ENGAGEMENT IN
RESEARCH.
IN MANY CASES PEOPLE WANT TO BE
MORE ENGAGING AND INCLUSIVE IN
THE RESEARCH BUT WE WANT TO MAKE
THIS EASIER.
WE ALSO ARE WORKING ON
DISSEMINATION AND IMPLEMENTATION
PLAN FOR SHARING THESE RESOURCES
AND THIS IS ANOTHER THING THAT
CROSSES EXTRAMURAL AND
INTRAMURAL BECAUSE WE CAN
SUPPORT OUR EXTRAMURAL P.I.s.
THAT'S A GOOD SEGUE TO OUR WORK
WITH INTRAMURAL DIVISION.
WE HAVE REGULAR MEETINGS WITH
INTRAMURAL LEADERSHIP INCLUDING
THE OFFICE OF THE SCIENTIFIC
DIRECTOR AS WELL AS THE OFFICE
OF THE CLINICAL DIRECTOR.
WE W
WE WERE RECENTLY ABLE IT GET
FUNDING FOR ESTABLISHING A
SUMMER RESEARCH PROGRAM IN
HEALTH DISPARITIES AND HEALTH
EQUITY RESEARCH.
WE WORKED OFFICE TO SUPPORT
EFFORTS.
IS WE ALSO WORK ON THE
EXTRAMURAL SIDE AND FACILITATING
INFORMATION SESSION WITH PROGRAM
OFFICERS AND SCIENTIFIC REVIEW
OFFICERS FOR THE INTRAMURAL
TRAINEES SO THEY UNDERSTAND THE
PROCESS WHEN THEY JOIN THE
COMMUNITY.
WE WORK ON SUPPORTING THE
WORKFORCE AND COLLABORATE ACROSS
THE OFFICE OF THE DIRECTOR.
WE FOCUS ON HOW TO SUPPORT
WORKPLACE CULTURE AND PROVIDE
RESOURCES TO OUR STAFF AND
PARTICULARLY ON SHARING
OPPORTUNITIES FOR ADVANCEMENT
AND PROFESSIONAL DEVELOPMENT
PROVIDING RESOURCES FOR
EMPLOYEES AND SUPERVISORS AND
FOSTERING A WELCOMING AND
INCLUSIVE WORKPLACE.
WE ALSO SUPPORT RETENTION AND
HIRING PRACTICES.
WE WANT TO INCREASE RECRUITMENT
EFFORTS TO SUPPORT DIVERSITY IN
OUR INTERNAL WORKFORCE.
WE WANT TO USE INCLUSIVE AND
EQUITABLE HIRING PRACTICES AND
THAT WE'RE ALSO THINKING ABOUT
RETENTION.
WE ALSO COLLABORATE WITH THE
OFFICE OF ADMINISTRATIVE
MANAGEMENT IN PARTICULAR TO
DEVELOP TRAININGS AND EXAMPLE
ARE MICROAGGRESSION BYSTANDER
TRAINING AND WE'VE BEEN DOING A
SERIES WITH TOPICS THAT ARE
FOCUSSED ON OUR INTERNAL
WORKFORCE.
THE FIRST SET OF TOPICS FOCUS ON
THE SECOND AREA AROUND
RECRUITMENT, RETENTION AND
HIRING.
AND FOR SUPERVISORS TO BE USE
MORE INCLUSIVE AND EQUITABLE
HIRING PRACTICES.
IT'S AIMED AT GIVING STRATEGIES
AND TOOLS FOR SUPERVISORS AND
ULTIMATELY EMPLOYEES TO BE ABLE
TO INCORPORATE DEI IDEALS IN THE
WORK THEY DO.
I WANT TO TALK ABOUT DEIA HERE
AT NICHD.
WE RECOGNIZE WE NEED DIVERSE
SCIENTISTS AT EVERY LEVEL.
IT ALLOWS US TO EXPAND THE
TALENT POOL AVAILABLE FOR
SCIENCE.
WE KNOW WE'RE ANSWERING QUITE
COMPLEX AND DIFFICULT QUESTIONS
AND NEED EVERYONE AT THE TABLE
TO HELP SOLVE THEM.
IT ALSO ALLOWS A WIDER RANGE OF
PERSPECTIVES.
AVOID BLIND SPOTS AND ADDRESS
CULTURAL EXPERIENCES AND IMPROVE
THE RESEARCH WE'RE SUPPORTING
AND CONDUCTING AND IS APPLICABLE
TO ALL.
A PARTICULAR INTEREST IS 2023
NIH DESIGNATED PEOPLE WITH
HEALTH DISPARITIES AS A HEALTH
DISPARITY POPULATION.
THEY'RE PREVENTIBLE DIFFERENCES
IN HEALTH OUTCOME.
PEOPLE WITH DISABILITIES
EXPERIENCE A VARYING RANGE OF
HEALTH CONDITIONS THAT LOAD TO
POORER HEALTH AND SHORTER LIFE
SPAN.
WE KNOW THERE'S EXCLUSIONARY
PRACTICES AND PROGRAMS AND
POLICIES THAT INHIBIT ACCESS TO
TIMELY HEALTH CARE WHICH FURTHER
RESULTS IN POORER HEALTH
OUTCOMES.
AND IT'S COMMON FOR PEOPLE WITH
DISABILITIES TO BELONG TO MORE
THAN ONE POPULATION WHO
EXPERIENCE HEALTH DISPARITIES
AND THAT IS REALLY
INTERSECTIONALITY.
THOSE DIFFERENT IDENTITIES CAN
JOIN INTO MAKE THEIR HEALTH
OUTCOMES EVEN WORSE.
I WANTED TO HIGHLIGHT THE
INTERVENTION ADDRESS THE
INTERSECTING IMPACT OF
DISABI
DISABILITY, RACE AND ETHNICITY
AND HEALTH CARE ACCESS AND
OUTCOMES.
NICHD IS ALSO WORKING TO ADD A
NEW CATEGORY TO IMPROVE THE
IDENTIFICATION OF RESEARCH
RELATED TO DISABILITY.
WHAT IS THE CATEGORY?
IT'S THE WAY RESEARCH FUNDED IN
PARTICULAR AREAS WITH CATEGORIES
AND DISABILITY IS NOT
INCORPORATED AS A CATEGORY
APPROPRIATELY THEN WE WOULDN'T
BE ABLE TO TRACK AND MONITOR
NIH'S INVESTMENT TO DISABILITY
RESEARCH.
PICTURE READY AREAS AND THERE'S
A DEMONSTRATION OF OUR SPENDING
ESTIMATES.
IT'S HIGH PRIORITY TO SUPPORT
INCLUSION AND ENGAGEMENT AND WE
HAVE MET NCMRR TO TALK ABOUT HOW
TO INCORPORATE PEOPLE WITH LIVED
EXPERIENCE IN THE RESEARCH WHICH
IS SOMETHING MCMRR HAS LED THE
CHARGE ON HERE AT NIXED.
-- NICHD.
WE HAVE A NEW OFFICE OF RESEARCH
ON THE EXTRAMURAL SIDE IS
INSTRUMENTAL IN PARTNERING WITH
US AND DEVELOPING A NUMBER OF
DIFFERENT TOOLS TO SUPPORT BOTH
OUR INTERNAL WORKFORCE AND
EXTRAMURAL INVESTIGATORS AND WE
WANT TO WELCOME YOUR THOUGHTS ON
THE INCLUSION OF PEOPLE WITH
DISABILITIES IN RESEARCH AND
ENGAGEMENT WITH COMMUNITIES AND
FEEL FREE TO E-MAIL US.
WE ALSO SUPPORT TRAINING AND
CAREER INVESTMENT STRATEGY AT
NICHD AND THAT'S REALLY
SUPPORTING US IN RE-THINKING HOW
WE SUPPORT TRAINEES AND HOW WE
THINK ABOUT WHAT SUCCESS MEANS
FOR TRAINEES AND HOW TO CONTINUE
TO DEVELOP OUR PROGRAMS TO BE A
RESOURCE FOR THE SCIENTIFIC
COMMUNITY AND PARTICULARLY
SUPPORT BROADENING THE PEOPLE
WHO ARE PARTICIPATING IN SCIENCE
AND INVOLVING UNDER REPRESENTED
COMMUNITIES.
I MENTIONED OUTREACH AND
ENGAGEMENT IN OUR KEY FOCUS
AREAS.
TO GIVE YOU A SNAPSHOT, OHE HAS
BEEN INVOLVED IN DOING A NUMBER
OF PRESENTATIONS AND
PARTICIPATING AT CONFERENCES.
WE ALSO HAVE BEEN AND THOSE ARE
MOSTLY EXTERNAL AND HAVE BEEN
DOING LISTENING TOUR AND
VISITING OFFICES, BRANCHES AND
DIVISIONS.
AND WELCOMING THEIR INPUT AND
THOUGHTS HOW NICHD APPROACHES
THE DEIA EFFORTS.
WE PROVIDE SEVERAL MONTHLY
NEWSLETTER AN COMMUNICATION
UPDATES.
WE ALSO COORDINATE COMMUNITY
SERVICE EVENTS LIKE OUR GROUP OF
EMPLOYEES PICTURES IN THE BOTTOM
LEFT AT THE CHILDREN'S INN.
THEY COLLABORATED TO PREPARE A
DINNER FOR THE CHILDREN AT THE
CHILDREN'S INN AND WE HAVE
SEVERAL MORE COMING.
AND WE ALSO PARTICIPATE NIH WIDE
ON.
THE CHIEF OFFICER FOR SKFK
WORKFORCE DIVERSITY CATALYST
COMMITTEE AS WELL AS CO-CHAIR
FOR CONFERENCE PLANNING
SUBCOMMITTEE THAT IS REALLY AIM
AT GETTING TRANS-NIH
PARTICIPATION IN DIVERSITY
RELATED CONFERENCES AND
CONFERENCE REACH POPULATIONS
THAT ARE UNDER REPRESENTED IN
THE SCIENCES.
THIS IS AN EXAMPLE OF THE OHE EX
TRNL -- EXTERNAL ENGAGEMENT AND
OUR WORK ACROSS THE INSTITUTE.
THIS IS A PICTURE OF SEVERAL OF
US AT THE CONFERENCE LAST FALL
IN PHOENIX, ARIZONA.
AND PICTURED THERE WITH ME ARE
THE PROGRAM OFFICER IN OFFICE OF
HEALTH EQUITY, THE DEPUTY
DIRECTOR OF THE EXTRAMURAL
ACTIVITIES AN AN INTRAMURAL P.I.
THAT'S US REACHING ACROSS THE
INSTITUTE TO SUPPORT SCIENTIFIC
WORKFORCE DIVERSITY.
WE WOULD LOVE TO KNOW IF THERE
ARE MEETINGS THAT PERTAIN TO
NCMRR THAT SUPPORT A BROADER
PARTICIPATION IN RESEARCH BY A
BROADER GROUP OF RESEARCHERS AND
TRAINEES YOU WOULD LIKE THE
OFFICE OF HEALTH EQUITY TO PUT
ON OUR RADAR.
I'D LIKE TO THANK YOU FOR
INVITING ME TO PRESENT AND TELL
YOU A LITTLE BIT ABOUT OFFICE OF
HEALTH EQUITY AND WHAT WE'RE
WORKING ON ACROSS THE INSTITUTE.
WELCOME ANY QUESTIONS OR
SUGGESTIONS.
YOU CAN FEEL FREE TO ALSO E-MAIL
US.
MY CONTACT INFORMATION IS ON THE
SLIDE AND AGAIN THANK YOU.
>> THANK YOU, DR. PRICE FOR THE
REALLY OVERVIEW OF THE THINGS
YOU'RE DOING.
I'LL OPEN IT UP FOR QUESTIONS.
LOUIS.
>> GOOD MORNING.
THANK YOU SO MUCH FOR THE
PRESENTATION.
I REALLY APPRECIATE SEEING YOU
HERE.
IN TERMS OF CONFERENCES TO PUT
ON YOUR RADAR I'LL RECOMMEND THE
AMERICAN SOCIETY FOR NEURO.
I HAVE TWO QUESTIONS I HAVE A
LOT BUT STICK TO TWO.
YOU MENTIONED WORK RELATED TO
THE OFFICE OF CLINICAL RESEARCH
I FORGOT THE REST OF THE TITLE.
THINKING ABOUT REGULARLY OF THE
POPULATION AND IN CERTAIN AREAS.
I'VE NOTED AND I NOTICED
CONVERSATIONS WITH COLLEAGUES OF
MINE AND OTHER AREAS WHERE
THERE'S A GENUINE INTEREST IN
REALLY UNDERSTANDING EXACTLY HOW
TO DIVERSIFY STUDY POPULATIONS
BEYOND THINGS LIKE DEMOGRAPHICS
OF THE ZIP CODE OR SOMETHING
LIKE THAT.
AND I WAS CURIOUS TO KNOW IF
THERE'S PROGRESS WITH ANY TOOLS
OR SYSTEMS OR RESOURCES.
THERE'S A LOT OF DATABASES OUT
THERE PEOPLE DON'T REALLY KNOW
ABOUT BUT KIND OF UNDERSTANDING
IF THERE ARE THINGS EMERGING IN
THAT AREA RIGHT NOW.
>> THANK YOU.
IT IS CERTAINLY A COMPLICATED
SPACE.
WE UNDERSTAND FROM THE NCMRR OUR
PERSPECTIVE ON MANY OF THE
CONDITIONS THAT YOU ALL FOCUS ON
COULD BE RARE.
I HAVE RARE DISEASES SO I HAVE
MY ZEBRA IN THE BACKGROUND AS
WELL.
THERE'S ALSO LOGISTICAL AND
STRUCTURAL CHALLENGE FOR
INVOLVING A BROADER RANGE OF
TEAM IN RESEARCH.
ESSENTIALLY HALF MY TEAM IS
DIGGING IN DEEP LOOKING AT WHAT
ARE THOSE BEST PRACTICES AND
WHAT ARE STRATEGIES AND WHAT ARE
SOME EMERGING RESOURCES AND
IDEAS TO SUPPORT THAT.
RIGHT NOW WE'RE NOT AT THE POINT
OF BEING ABLE TO PRESENT THAT
BUT I WOULD SAY STAY TUNED AND
WE WILL CERTAINLY BE SHARING
WHAT WE FIND WITH NCMRR AS WELL
AS ACROSS THE INSTITUTE AS I
MENTIONED.
>> THANK YOU, THAT'S GREAT.
THE OTHER QUESTION BRIEFLY
RELATED TO WORKFORCE DEVELOPMENT
IDEAS PARTICULARLY THINKING
ABOUT DIVERSIFY THE WORKFORCE.
I NOTED A LOT OF THE WORK THAT
SOME OF OUR SOCIETIES HAVE DONE
PARTICULARLY THE ENGINEERING.
ONE OF THE BLACK ENGINEERING
SOCIETIES HAS HEAVILY FOCUSSED
IN PRIMARY AND SECONDARY
EDUCATION AREAS.
ED A LOVE TO KNOW IF THERE ARE
ANY EFFORTS OR FOCUS, BETTER
WAYS TO ENGAGE WITH ELEMENTARY
SCHOOLS OR SECONDARY SCHOOLS,
THAT KIND OF THING TO REALLY
STIMULATE INTEREST IN THE WORK
THAT WE'RE DOING.
>> SO I THINK THE BIGGEST POINT
IN THIS AREA IS TO INTERVENE AND
INVOLVE CHILDREN AS EARLY AS
POSSIBLE.
THERE'S STUDIES THAT HAVE SHOWN
IF YOU ASK EVEN AN ELEMENTARY
SCHOOL CHILD TO DRAW A SCIENTIST
THEY DRAW AN OLD WHITE MAN AND
THE PICTURE WON'T LOOK LIKE THE
CHILD THEMSELVES IN MOST CASES.
THE MOST IMPORTANT THING IS
INTERVENING EARLY ON AND WE ARE
LOOKING AT WAYS TO PARTNER WITH
OUR OFFICE OF EDUCATION
PARTICULARLY ON THE INTRAMURAL
SIDE TO PARTICIPATE IN SCIENCE
FAIRS FOR EXAMPLE.
THERE ARE OPPORTUNITIES FOR
NICHD STAFF TO SERVE AS JUDGES
AND THEN WE CAN INVITE THEM AS
THE PRIZE TO TRAIN ON OUR
INTRAMURAL SIDE.
WE'RE ALSO LOOKING AT SUPPORTING
LIKE SCIENCE FAIRS AND OTHER
SCIENCE DEMONSTRATIONS FOR
YOUNGER GENERATIONS AND ACTUALLY
IN MY INTERVIEW A YEAR AGO I
SAID NICHD IS REALLY PRIME TO
INTERVENE IN YOUNGER CHILDREN
BECAUSE OF THE MISSION OF OUR
INSTITUTE.
SO WE'RE CERTAINLY THINKING OF
WAYS BUT I THINK THE MAIN
MESSAGES THE SOONER THE BETTER.
>> THANK YOU.
FRANCISCO.
>> THANK YOU SO MUCH.
VERY GOOD OVERVIEW.
I WAS VERY IN COUR -- ENCOURAGE
SEE THE DISSEMINATION PLAN
BECAUSE MOST INVESTIGATORS ARE
NOT CLEAR ABOUT THAT.
MORE SPECIFICALLY, IN TERMS OF
DIVERSIFYING THE WORKFORCE OFF
THE FELLOWSHIPS WHERE IT'S
SOMEONE WHO HAS NOT YET BEEN
ADMITTED TO A Ph.D. PROGRAM IS
ABLE TO APPLY AND ESSENTIALLY BY
HAVING THIS AWARD ESSENTIALLY
ABLE TO CHOOSE WHERE THEY GO TO
TRAIN.
IS THERE TALK ABOUT EXPANDING
THE F PROGRAM TO -- WE KEEP
GOING DOWN THE NUMBERS.
SOMETHING LIKE AN F29 THAT IS
BEFORE THE F30 BECAUSE THE F30
IS WHEN YOU'RE ALREADY
MATRICULATED AND HAVE BEAT ALL
THE ODDS TO GET INTO A DOCTORAL
PROGRAM.
IT'S A VERY SMALL POPULATION
THAT CAN DO THAT.
HOWEVER, BEING ABLE TO USE AN F
MECHANISM TO DIVERSIFY AT THE
GROUND FLOOR AT LEAST IN THE
UNIVERSITY DOCTORAL CONTEXT IS
USEFUL.
HAVE YOU CONSIDERED THAT IN YOUR
OFFICE?
>> THANK YOU.
I WANT TO HIGHLIGHT DR. CRUZ FOR
LEADING OUR TRAINING WORKING
GROUP RECOMMENDATIONS BUT WE
HAVE JUST PUT TOGETHER A
TRAINING IMPLEMENTATION GROUP
AND THE PROGRAM OFFICER SERVES
ON THAT GROUP.
SO THEY'RE NEEDING TO THINK
ABOUT WHAT ARE THOSE PARTICULAR
MECHANISMS AND AVENUES THAT WE
CAN SUPPORT INVESTIGATORS OR
TRAINEES AT AN EARLY STAGE AND
BUILDS ON THE EARLIER QUESTION.
THE OTHER THING THE OFFICE OF
HEALTH EQUITY HAS THE BENEFIT OF
WE WORK WITH INTRAMURAL DIVISION
ON OUR POST-BAC.
WE HAVE PRE-BAC AND POST-BAC
TRAINING BEFORE THEY'RE EITHER
CURRENT UNDERGRADUATE STUDENTS
OR RECENTLY GRADUATED FROM
UNDERGRADUATE.
SO LEARNING FROM THAT GROUP HOW
BEST THEY CAN BE SUPPORTED ON
CONTINUING ON IN OUR RESEARCH
CAREER.
WE WILL BE ABLE TO ADD THOSE TO
THE TRAINING WORKING GROUP ON
THE EXTRAMURAL SIDE TO THINK
THROUGH MECHANISMS TO SUPPORT
THE BROADER SCIENTIFIC TRAINING
COMMUNITY.
>> THANK YOU.
MICHELLE, DID YOU STILL HAVE A
QUESTION?
>> I KIND OF HAD LIKE A
COMMENT/QUESTION OR CONCERN.
I KNOW THERE'S A LOT OF ACTIVITY
AROUND DEI AND IN TERMS OF THE
IMP
IMPACT AT NIH I WAS ENCOURAGED
BUT CONCERNED WITH THE
INITIATIVES BE IMPACTED AND IS
THERE A WAY TO MAKE SURE THEY'RE
NOT IMPACTED REGARDLESS OF WHO
IS IN THE WHITE HOUSE IS WHERE I
WAS THINKING ABOUT THIS.
>> YES, THANK YOU.
FIRST I THINK IT'S IMPORTANT TO
POINT OUT NIH HAS ALWAYS HAD A
BROAD DEFINITION OF DIVERSITY
AND IT'S NEVER FOCUSSED ON ONE
PARTICULAR GROUP SO IT'S WELL
BEYOND RACE AND ETHNICITY WHICH
IS ONE OF THE AREAS THAT'S BEEN
FOCUSSED ON WITH THE RECENT
RULINGS AND POLICY CHANGES.
OUR TRAINING PROGRAMS AND OTHER
DIVERSITY INITIATIVES HAVE BEEN
NOT BEEN DIRECTLY IMPACTED.
HOWEVER, CERTAINLY PEOPLE'S
ABILITY TO APPLY AND SUBMIT
CERTAIN PARTS OF THE APPLICATION
HAVE AND SO NIH IS THINKING HOW
TO REPACKAGE CHOTHOSE SO THEY'R
RESILIENT TO CHANGING LOCAL
POLICIES.
OVER ALL NICHD HAS ALWAYS BEEN
COMMITTED IN THINK ABOUT HOW TO
PROMOTE HEALTH FOR ALL.
AND WE MAY HAVE TO CHANGE THE
WAY IN WHICH WE TALK ABOUT IT.
THE TERMS IN WHICH WE USE BUT
OUR COMMITMENT REMAINS.
I MENTIONED BRIEFLY WE'RE WORK
ON A NEW LANDING PAGE THAT'S
GOING TO BE CALLED RESEARCH FOR
ALL.
WE HAVE ALREADY STARTED THINKING
ABOUT HOW TO BROADEN -- HOW WE
TALK ABOUT DEIA INITIATIVES AND
IT TRULY MEANS SUPPORT FOR ALL
PEOPLE POTENTIALLY INTERESTED IN
OPPORTUNITIES AT NICHD AND IT'S
GOING TO MAKE IT EASIER FOR
PEOPLE TO NAVIGATE TO PARTICULAR
OPPORTUNITIES THAT MAY BE OF
INTEREST TO THEM AND WE ALSO
PLAN ON HIGHLIGHTING SUCCESS
STORIES OF PEOPLE FROM MANY
DIFFERENT BACKGROUNDS AND TO
ALSO PROVIDE EXAMPLES AND
SUPPORT FOR PEOPLE TO
PARTICIPATE IN OUR INSTITUTE.
BUT IT'S AN EVER EVOLVING
CLIMATE WE'RE MONITORING BUT THE
NICHD'S STEADFAST COMMITMENT AS
PART OF OUR MISSION TO ENSURE
THE HEALTH OF PEOPLE, FAMILIES,
CHILDREN ALL THAT BROAD SCOPE
AND FOCUS.
>> THANK YOU.
ONE LAST QUESTION, PEPE.
>> THANK YOU FOR YOUR EXCELLENT
PRESENTATION.
I WOULD LIKE TO EMPHASIZE THAT
IT'S NEVER TOO EARLY TO
ENCOURAGE SCIENCE.
WE'RE PARTNERING WITH MUSEUMS
AND PROFESSIONALS FROM THE
PERFORMING ART BRINGING
TECHNOLOGY AND SCIENCE AND KWWH
IT TAKES TO CONDUCT SCIENCE.
WE WERE ABLE TO REACH OUT TO
1500 CHILDREN AND IT'S NOT ONLY
THE OUTREACH BUT THE STUDENTS
ARE RUNNING EXPERIMENTS AND OF
COURSE THE RESEARCH.
I HOPE THAT WE CAN DO THIS MORE
AND IT'S SOMETHING THAT IS EASY
TO SCALE UP IN THE FUTURE.
THANK YOU.
>> THAT'S GREAT.
I WANTED TO MAKE ONE QUICK
COMMENT.
WE TALKED A LOT ABOUT SUPPORTING
STUDENTS AT EARLIER STAGES.
I WANTED TO HIGHLIGHT OUR
DIVERSITY SUPPLEMENT PROGRAM
STARTS WITH SUPPORT OF HIGH
SCHOOL STUDENTS AND UNDERGRAD
AND POST-BACS.
WE GENERALLY THINK ABOUT IT IN
THE UPPER LEVELS BUT GOES TO
HIGH SCHOOLS SO I WANTED TO MAKE
THAT POINT.
>> THANK YOU.
WE'LL TURN IT BACK TO RALPH NOW.
>> I APPRECIATE THE DISCUSSION.
I THOUGHT THAT WOULD BE
SOMETHING THAT WOULD ENGAGE THE
GROUP AND I APPRECIATE AMANDA
FOR BRINGING THAT BACKGROUND.
I THINK IT'S AN IMPORTANT TOPIC.
I'M PROOFED TO INTRODUCE ANOTHER
ONE OF MY NICHD -- PLEASED TO
INTRODUCE DR. ANTONELO PILEGGI
INTERESTED IN MEDICAL DEVICES
AND DRUG DELIVERY SYSTEMS AND
HEALTH ACTIVITIES.
SO HE'S HELPING US LEAD AN
INTERAGENCY EFFORT IN PEDIATRIC
MEDICAL DEVICE AND IT'S ALSO A
PUBLIC-PRIVATE PARTNERSHIP AND
HE'S BEEN A PARTICIPANT IN THE
FIRST TWO DAYS OF THE MEETING.
WE APPRECIATE YOUR ENGAGEMENT.
HE'S GOING TO GIVE US BACKGROUND
ON UPDATES ON PEDIATRIC MEDICAL
DEVICE IN THE PUB
PUBLIC-PRIVATE PARTNERSHIP.
>> THANK YOU FOR THE OPPORTUNITY
TO SHARE PROGRESS WE'RE MAKING.
LETS GET STARTED.
THE DEVICES ARE QUITE BROAD AND
YOU CAN ENVISION THERE'S QUITE
THE BROAD SPECTRUM HERE AND
THERE ARE CHALLENGES AND THE
DEVELOPMENT OF MEDICAL DEVICES
FOR PEDIATRICS.
FIRST OF ALL, IT'S AN OXYMORON
BUT CHILDREN ARE NOT SMALL
ADULTS AND YOU CAN IMAGINE A
SMALL BABY NEWBORN BABY THAT HAS
TO GROW TO FULL MATURITY AND A
LOT OF CHANGES THAT OCCUR IN THE
EARLY YEARS OF LIFE AND
THROUGHOUT ADOLESCENCE BEFORE
THEY ARE PRE-ADULT THERE'S
PHYSIOLOGICAL AND DIMENSIONS
AND.
-- AND NEEDS AND CONSIDERATION
ARE TO DEVICES IN PEDIATRICS.
AND THERE'S CONSIDERATIONS WE'VE
ALLUDED TO AND ALSO IN THE CASE
OF LONG-TERM DEVICE USERS IF
YOU'RE CONSIDERING DEVICES
IMPLANTED IN THE BODY AND THEY
KNEAD TO BE IN PLACE FOR LONG
TERM AND NEED TO MODIFY THE SIZE
OF THE DEVICE, ETCETERA ARE
MAJOR CONCERNS FOR THE
REGULATORS FOR THOSE MAKING THE
DEVICES.
AND LAST BUT NOT LEAST IS LOW
RETURN ON INVESTMENT.
IT'S A SMALL MARKET AND
SOMETIMES INNOVATORS OR
COMPANIES DON'T GET ENGAGED IN
THE SPACE BECAUSE OF THE HIGH
RISK AND PURSUE OTHERS.
THIS LEADS TO OFTEN TIMES
DEVICES THAT ARE SPECIFICALLY
DESIGNED FOR PEDIATRIC
POPULATIONS AND MAYBE USE OF
DEVICES THAT ARE BEEN APPROVED
AND LABELLED FOR ADULTS
UNPEDIATRICS WITH TEMPERING
ACTIVITY WITH THOSE USING THEM
AND TAKING THE RISK ASSOCIATED
WITH THAT.
THERE'S ANOTHER CHALLENGE AS WE
LACK AT THE NUMBER OF DEVICES
APPROVED LOOK AT THE NUMBER OF
DEVICES APPROVED FOR LABELLING
WITH ADULTS AND THOSE FOR
CHILDREN THIS IS FROM A
COLLEAGUE AND THE CENTER FOR
DEVICES AND HEALTH AND THOSE ARE
NUMBERS ONE A LONG PERIOD OF
TIME OF ABOUT 10 YEARS OF
DEVICES APPROVED BY THE FDA AS
HUMANITARIAN USE DEVICE OR
MARKET APPROVAL.
YOU CAN APPRECIATE THEY TEND TO
GO UP OVER TIME.
WHILE THE BLUE RELATED TO THE
PEDIATRIC LABELLING REMAIN
RELATIVELY FLAT.
THE FOCUS IS SLOWER.
IF WE BREAK DOWN THESE TO MORE
DETAILS THIS IS REALLY SHOWING
WHERE THE PROBLEM IS.
IF WE LOOK AT THE PIE CHART
THERE IS A LARGE PROPORTION OF
DEVICES APPROVED FOR ADULT
DEVICES FOR ADULT RECIPIENTS OR
INDIVIDUALS.
AND AS WE LOOK AT THE BREAK DOWN
FOR DIFFERENT AGES TO THE LEFT
OF THE CURVE TOWARDS THE
YOUNGEST OF THE PEDIATRIC
POPULATION --
[NO AUDIO]
>> AM I THE ONLY ONE WHERE
THERE'S DIFFICULTY?
>> I CAN'T HEAR IT EITHER.
>> ME AS WELL.
>> WE LOST ANTONELO.
>> OH, NO.
>> WE'LL GIVE HIM A MINUTE TO
REJOIN.
>> I LOST CONNECTIVITY.
CAN YOU HEAR ME NOW?
>> YOU'RE BACK.
>> I APOLOGIZE.
WHERE DID YOU LOSE ME OR WHERE
DID I LOSE YOU?
>> THE PIE CHART.
>> I THINK WE LOST HIM AGAIN.
>> I'M MESSAGING HIM TO GET THE
PHONE NUMBER AND WE'LL GO FROM
THERE.
>> SORRY.
I'M HAVING TECHNICAL PROBLEMS.
WILL YOU SHARE
I SLIDES SO I DON'T HAVE TO.
>> YOU CAN TURN OFF YOUR VIDEO
AS WELL.
>> THANKS.
YEAH.
>> LET ME KNOW NEXT SLIDE.
>> THANK YOU.
SO, JUST BRIEFLY SO HE THE
NUMBER OF DEVICES THAT APPROVED
FOR ADULTS IS DEFINITELY THE
MAJORITY YOU CAN SEE ON THE
YELLOW.
AS WE MOVE TOWARDS THE LEFT OF
THE CURVE SO THE YOUNGEST
PATIENTS THE NUMBER OF DEVICES
THAT HAVE AN INDICATION IS
SMALLER.
AND YOU CAN ALSO INFER THE
PREADULTS ARE THE ONES THAT
SOMETIMES GET THE LABELLING WHEN
AN ADULT DEVICE IS APPROVED
BECAUSE OF THE SIZE OR
PHYSIOLOGICAL PARAMETERS ARE NOT
SO DIFFERENT FROM THOSE OF
ADULTS.
IT'S LABELLED PEDIATRIC.
IT'S A SMALL PORTION OF THE
POPULATION.
SO OVER THE YEARS THERE HAVE
BEEN A NUMBER OF REGULATORY
RULES AND GUIDELINES THE FDA HAS
INTRODUCED AS INTERESTING
MEDICAL DEVICES BECAME MORE
CENTERED.
THERE'S AN ACCELERATION IN THE
RECENT YEARS WITH SOME
LEGISLATIVE ACTIONS THAT HAVE
PUT THE FOCUS AND ASK THE FDA
AND OTHER AGENCIES TO LOOK AT
PEDIATRIC MEDICAL DEVICES WITH
MORE ATTENTION.
THIS IS A HIGH LEVEL OF SOME THE
KEY THAT HAVE IMPACTED THE
PEDIATRICS AND WE STARTED WITH A
REPORT FROM THE INSTITUTE OF
MEDICINE.
THE SAME MEDICAL DEVICE FOR
CHILDREN.
THAT LED TO SOME CONSENSUS
DISCUSSIONS THAT LED TO THE
PEDIATRIC MEDICAL DEVICE SAFETY
AND IMPROVEMENT ACT
RE-AUTHORIZED OVER THE PAST
SEVERAL YEARS AND WITH THE
MANDATES THERE WAS TO ESTABLISH
THE PEDIATRICS FOR MEDICAL
DEVICES AND INCENTIVES AND
ESTABLISHING PEDIATRIC DEVICE
CONSORTIA FOCUSSED ON REGULATORY
AND KNOWN IN THE PEDIATRIC
MEDICAL DEVICE DEVELOPMENT AND
ALSO ESTABLISHED THE NIH POINT
OF CONTACT FOR PEDIATRIC MEDICAL
DEVICE DEVELOPMENT AND
LEGISLATION HELD BY NICHD AT THE
PRESENT TIME.
BUT DESPITE ALL THOSE REGULATORY
OR LEGISLATIVE ACTIONS THERE IS
STILL THIS PROBLEM I SHOWED
EARLIER HAS NOT BEEN SOLVED.
AND THERE WAS A PRE-CONSORTIUM
FOR MEDICAL DEVICES.
THIS WAS AN EFFORT TO TRY TO
BRING VARIOUS STAKEHOLDERS FROM
PUBLIC AND PRIVATE SECTOR TO
DISCUSS WHAT ARE THE ROAD BLOCKS
AND WHAT COULD BE POSSIBLE
STRATEGIES TO PAVE THE WAY FOR
MEDICAL DEVICE DEVELOPMENT TO
BRING MORE SOLUTIONS TO THE
PATIENTS IN NEED.
THIS EFFORT REACHED ITS HIGHEST
LEVEL IN FEBRUARY 2021 IN A
PUBLIC MEETING AND THERE WAS
CONSENSUS FROM THE COMMUNITY AND
STAKEHOLDERS WHO PARTICIPATED IN
THE EFFORT THAT PUT TOGETHER A
PARTNERSHIP OR CONSORTIUM AS A
VIABLE OPTION TO HELP THE.
-- THE PROCESS.
AT THE NIH WE AND DR. BIANCHI
PROVIDED THE NICE OVERVIEW OF
THE EFFORT IN THE PEDIATRIC
SPACE BY NIH AND ESTABLISHED THE
NIH RESEARCH CONSORTIUM THAT HAS
BEEN REALLY HELPING IN
COORDINATING EFFORTS THAT ARE IN
THE SPACE AT THE NIH ACROSS THE
NIH.
IN 2021, WE ASKED TO PUT
TOGETHER A SUB GROUP ON DEVICES
IN AN ATTEMPT TO ENHANCE THE
COORDINATION WITH NIH IN
PREPARATION WITH SYNERGIES WITH
A MORE MEDICAL DEVICES.
THE ROLE OF NIH WITH THE FIRST
IN HUMAN OR CLINICAL TRIALS.
WE FELT AS PART OF THE ECO
SYSTEM IT WAS INTRINSIC AND WE
COULD HELP LEVERAGE THE SOURCES
AVAILABLE BY THE NIH AND
STRENGTHEN A PARTNERSHIP WITH
LONG LASTING AND IMPACT IN THE
FIELD.
WE HELD A SMALL STAKEHOLDER
MEETING IN JANUARY 2022.
AMONG THE HIGHLIGHTS DR. BIANCHI
SAID WAS THE NEEDS OF PEDIATRIC
PATIENTS REPRESENTS A PERSISTENT
AND MAJOR PUBLIC HEALTH PROBLEM.
AND COLLABORATIVE PLATFORMS TO
TRY TO OVERCOME THIS AND
NATIONAL MULTI-STAKEHOLDER
EFFORT WOULD BE GAME CHANGE.
WE TOOK IT TO ART AND THAT GAVE
US THE IMPETUS TO WORK WITH OUR
OTHER PARTNERS TO TRY AND BRING
EVERYBODY TOGETHER.
WE LEVERAGED THE CAPABILITY OF
THE ORGANIZATION THAT HAS HELPED
ESTABLISH A NUMBER OF
PARTNERSHIPS OVER THE YEARS
INCLUDING BUT NOT LIMITED TO THE
MAJOR EFFORT THAT LED TO THE
WORK DURING THE PANDEMIC TO TEST
NEW TREATMENT AND HELP MITIGATE
THIS IMPACT OF THE DISEASE.
THE BEST WE COULD ASK FOR THIS
TASK.
AND IT WAS A LONG PROCESS BUT WE
HAVE GONE THROUGH HOOPS AND
HOOPS.
WE WERE ABLE TO CONSOLIDATE
CONSENSUS FROM DIFFERENT
STAKEHOLDERS.
WE WORKED CLOSELY WITH THE FDA,
WITH OTHER U.S. GOVERNMENT
AGENCIES AND THROUGH THE WORK OF
ALMOST TWO YEARS WE WERE ABLE TO
REALLY GET THROUGH THE PROCESS
AND LEVERAGE THROUGH THE
U.S. PARTNERS AN LAUNCHED IN
SEPTEMBER 2023 THIS EFFORT.
WE ALSO TRIED TO OBTAIN BROAD
FEEDBACK THROUGH OUR REQUEST FOR
INFORMATION AND THE ISSUES THE
COMMUNITY IDENTIFIED WERE
MULTI-FOLD AND ALIGNED WITH THE
NEED TO LOOK AT THE PRODUCT
DEVELOPMENT, ACCESS TO RESOURCES
IN FUNDING.
ACCESS TO THE PATIENTS.
ACCESS TO MORE STREAMLINED
REGULATORY PATHWAYS
REIMBURSEMENT AS WELL.
A COMPLEXITY OF PROBLEMS THAT
LEAD TO THE MAIN PROBLEM IN
DECEMBER LAST YEAR WHERE HE
LAUNCHED THE DESIGN PHASE
CHARGED TO DEVELOP A BLUEPRINT
FOR IMPLEMENTATION THAT SHOULD
FALL WITHIN ONE OR TWO YEARS
FROM NOW.
IT'S BUILT AROUND THE IDEA OF AN
EFFORT TO BRING THE STAKEHOLDERS
TOGETHER.
THE FNIH HAS BEEN RECRUITING THE
BROADER SECTOR PARTNERS TO
ENSURE BROAD INCLUSION OF
DIFFERENT STAKEHOLDERS.
AND WE'VE HAD A NUMBER OF
MEETINGS THROUGH THE SIX WORK
STREAMS.
THOSE WORK STREAMS ARE CHARGED
AND FOCUSSED ON DIFFERENT
ASPECTS OF THE PRODUCT
DEVELOPMENT.
WE'RE FOCUSSED ON THE PROCESS TO
ALLOW INNOVATORS TO GET THROUGH
THE SYSTEM AND ACCESS RESOURCE
WILL BE MADE AVAILABLE.
INVOLVEMENT OF HOSPITALS AND
DECENTRALIZED CLINICAL TRIAL
CENTERS TO HELP TEST THOSE
DEVICES AND HELP GENERATE THE
APPROVAL FOR REIMBURSEMENT.
THE WORK STREAM AND WHAT IS
THERE AND MISSING AND HOW TO TRY
TO CHANGE THE LANDSCAPE WHICH IS
MORE CHALLENGING BECAUSE
REIMBURSEMENT FOR PEDIATRICS ARE
OFTEN MOSTLY DEPEND ON MEDICAID
WHICH IS ADMINISTERED AT THE
STATE LEVEL WHICH MAKES MORE
COMPLICATED NEGOTIATIONS.
AND THE REGULATORY WORK STREAMS
HAS BEEN FOCUSSING ON WHAT CAN
THE FDA DO TO HELP DEVELOPMENT
AND THE INNOVATORS TOFIDE THE
MOST VIABLE WAY TO SUPPORT SUCH
AN INFRASTRUCTURE THAT PROBABLY
WILL RELY ON FUNDS AND DEVELOP
INTO THE SUSTAINABILITY THAT'S
FUNDAMENTAL FOR THE ENTERPRISE.
THESE ARE THE CURRENT PARTNERS.
ON THE NIH SIDE AND THE NATIONAL
INSTITUTE OF BIO MEDICAL AND
BIOENGINEERING ARE THE TWO
LEADING INSTITUTES AND WE HAVE
GREAT SUPPORT FROM NCI AND NHLBI
AND NIMS AND NIH AND NIDA.
NIDA AND THE DEVELOPMENT
AUTHORITY BARDA IS ALSO HEAVILY
INVOLVED UNTHIS ENDEAVOR AND I
ALREADY MENTIONED THE FDA AND
CENTER FOR DIAGNOSTICS AND
BIOLOGICAL HELP.
THERE'S A NUMBER OF PRIVATE
SECTOR PARTNERS THAT INCLUDE
CHILDREN'S HOSPITAL AND INDUSTRY
AND AMERICAN ACADEMY OF
PEDIATRICS AND A BROAD BASE OF
STAKEHOLDERS.
THERE'S ALSO ADDITIONAL
STAKEHOLDERS IN THE WORK STREAM
AS SUBJECT MATTER EXPERTS.
WE ALSO HAVE REPRESENTATION OF
DIFFERENT DISCUSSIONS.
THE FOUNDATION FOR THE NIH IS
CONVENING THIS EFFORT AND THEY
HAVE THE CENTER FOR REGULATORY
SCIENCE AS A SUBCONTRACT TO
CONVENE TWO OF THE WORK STREAMS,
THE FINANCE AND REGULATORY WORK
STREAM.
THIS IS THE TIME LINE WE ARE
WORKING AGAINST.
IT'S BEEN QUITE CHALLENGING TO
KEEP ON TRACK BUT WE'RE DOING
OUR BEST.
THERE'S A LOT OF DIFFERENT
INTEREST AND OPINIONS COMING TO
THE TABLE.
THAT'S GOOD.
IT'S A RICH AND ENGAGED GROUP.
THE OBJECTIVE OF THE ENDEAVOR IS
TO COME UP WITH A WHITE PAPER
THAT SHOULD CAPTURE OPERATIONAL
MODELS TO ENABLE A STRUCTURE TO
BE LARGE TOWARDS THE END OF
2025.
BUT I WANT TO BE CAUTIOUS ONE
THE TIME LINE BECAUSE WHERE HE
SHIFTED IN THE PAST AND WANT TO
MAKE SURE WE HAVE SOMETHING IN
PLACE THAT CAN BE READY TO BE
TESTED WITH SOME PILOT STUDIES.
SO THAT'S THE ARROW SHOWING THE
PRODUCT OF THE ENDEAVOR AND
WE'RE HOPING IT WILL BE THE
PREMISE FOR THE FINAL STUDIES
AND IMPLEMENTATION AND THEN HELP
THE INFRASTRUCTURE BECOME MORE
INDEPENDENT OVER TIME IN TERMS
OF STAINSABILITY.
SUSTAINABILITY.
IT'S A MULTI-STAKEHOLDER VENUE
TO ADVANCE THE ECO SYSTEM.
WE'RE TRYING TO LOOK AT IT FROM
MULTIPLE ANGLES.
THERE IS EVIDENCE GENERATION AND
EDUCATION AND ACCESS TO
RESOURCES AND ADEQUATE WORKFORCE
AND CONTRIBUTION OF AND THE
PURSUED OF THE CENTRALIZED
CLINICAL TRIALS.
WE WANT TO DISPATCH THOSE
DEVICES AND TEST THEM IN THE
REAL WORLD SETTING.
ECHOING WHAT DR. SCHRADER WAS
SAYING AND WE NEED THE DATA AND
THAT'S SOMETHING WE'RE COGNIZANT
WE NEED TO FIND THE REAL
PROBLEMS NOT JUST IN A PROTECTED
VARIETY.
THIS IS TEAM WORK AND A
REPRESENTATION OF THE VARIOUS
PARTICIPANTS OF THE ENDEAVOR ON
THE U.S. GOVERNMENT SIDE STATING
THIS OVER THE LAST COUPLE YEARS.
I THINK THIS IS MY LAST SLIDE.
I RUSHED THROUGH.
I HOPE WE HAVE TIME FOR
QUESTIONS.
THANK YOU SO MUCH.
SORRY FOR THE TECHNICAL
DIFFICULTIES.
>> THANK YOU VERY MUCH.
YOU WENT WITH THE TECHNICAL
DIFFICULTIES VERY WELL.
WE HAVE TIME FOR SOME QUESTIONS.
>> THANK YOU.
I'M EXCITED ABOUT THE PUBLIC
PRIVATE PART UNDERSHIP --
PARTNERSHIP PLAN.
THAT'S A NEW DIRECTORATE AND I
THINK IT WOULD BE A GREAT
OPPORTUNITY TO WORK TOGETHER AS
WE DO IN OTHER AREAS.
I'M RUNNING ONE OF THOSE CENTERS
THAT FOCUS ON PEDIATRIC
TECHNOLOGY AN IT'S VERY
IMPORTANT.
THE OTHER ASPECT IS WE NEED TO
EDUCATE PEOPLE IN REGULATORY
SCIENCE IN CONVERSATION WITH THE
FDA BECAUSE THEY'RE TECHNICALLY
INTERESTED AND UNDERSTANDING THE
PEDIATRIC DEVICE.
WE NEED TO CAPTURE THAT AS WELL.
OTHERWISE WE WILL HAVE A
SHORTAGE OF SPECIALISTS AND
OTHER TYPES OF PROFESSIONALS IN
THIS AREA.
AND MY QUESTION IS HOW THIS CAPS
ON THE NEW PROGRAM WHICH I THINK
IS A GREAT IDEA.
THAT COULD BE IT COULD BE A FAST
TRACK FOR SOME OF THESE IDEAS.
>> THANK YOU.
FOR YOUR COMMENTS AND NOR
QUESTION.
-- FOR THE QUESTION.
BRIEFLY, YES, NSF AND OTHER
WE'RE LENDING OUR HAND AND
HOPING TO INVOLVE MORE PARTNERS
IN THE PUBLIC AND PRIVATE
SECTOR.
THE MORE -- I MUST SAY, THERE'S
A GREAT MOMENTUM ON THIS.
PEOPLE ARE INTERESTED IN
PARTICIPATING AN ENGAGING.
WE HAVE OPPORTUNITIES TO
CONSOLIDATE ALL POSSIBLE
RESOURCES.
THANK YOU FOR POINTING US IN THE
NSF RESOURCES.
REGULATORY SCIENCES.
THE FDA IS ACTIVELY INVOLVED IS
AND THERE'S A ROLE AS WELL AS
BUT WE ARE FULLY AWARE WE NEED
SPECIFIC FOCUS AND THE FDA'S
ALSO WORKING ON INCREASING THE
WORKFORCE OF PEDIATRIC
PHYSICIANS AND SURGEONS THAT CAN
HELP WITH PEDIATRIC MEDICAL
DEVICES THAT OTHERWISE WOULD BE
MISTREATED OR MISINTERPRETED BY
THOSE THAT DON'T UNDERSTAND THE
PATIENT POPULATIONS AT STAKE.
REGARDING THE UPTAKE, WE HAVE A
NUMBER OF RESOURCES AND PROGRAMS
THAT ALREADY EXIST.
WE DON'T NEED TO REBUILD THE
WHEEL.
WE'RE THINKING TO WORK ON
INTEGRATING AND COORDINATING
EXISTING RESOURCES TO BE JUMP
STARTED SO THERE'S A SOLUTION
THAT CAN BENEFIT FROM THE TYPE
OF SUPPORT.
I'M A GREAT SUPPORTER OF THOSE
STRUCTURES THAT NOT ONLY PROVIDE
FINANCIAL SUPPORT TO PRODUCT
DEVELOPMENT BUT HAVE THE
MENTORING AND HAVE CONSULTORSHIP
ON THE REIMBURSEMENT AND
MARKETING.
THIS IS A WAY TO FILL THE GAP
AND HELP MORE SOLUTIONS TO GET
FROM IDEATION TO THE PATIENTS
MORE SUCCESSFULLY THAN IN THE
PAST.
>> TWO MORE QUESTIONS.
>> THANK YOU FOR THE INFORMATIVE
TALK BUT I HAVE A CLARIFICATION.
IN YOUR GRAPHS WHEN YOU SHOW THE
REGULATORY SUCCESS OF PEDIATRIC
DEVICES IT WOULD BE USEFUL TO
HAVE A BREAK DOWN AS TO THE FDA
CLASS BECAUSE CLASS 1 AND CLASS
3 ARE UNIVERSES A PART.
THE ENTIRE EVERYTHING IS
DIFFERENT.
IT WOULD IMPORTANT TO SEE WHERE
THE OPPORTUNITIES COULD BE
THERE.
SECOND AND I WOULD LIKE TO
UNDERSTAND ONCE THE SYSTEM SIN
PLACE, WHAT WILL IT ACTUALLY DO
AND HOW IT WILL INTERACT WITH
THE SBIR PROGRAM.
>> I THINK YOU POINTED TO IT.
WE ARE TALKING ABOUT BEFORE
RANGE OF AGES AND DEVICES FROM
AN ALGORITHM TO IMPLANTABLE
DEVICE AND EVERYTHING IN
BETWEEN.
WE'LL WORK ON THAT.
PEDIATRIC MEDICAL DEVICES ARE
REGULATED AS MEDICAL DEVICES IN
GENERAL.
WE NEED THE EXPERTISE AND THE
WAY FOR THE PATIENT POPULATIONS
AND TRYING TO WORK WITH
REGULATORS TO ENSURE THOSE
BECOME AVAILABLE AND THERE ARE
EFFORTS AND PROGRAMS THAT ARE
ALREADY IN PLACE THAT COULD BE
POTENTIATED AND EMPHASIZED TO
HELP INNOVATORS WHO HAVE AN
INTEREST IN THE PEDIATRIC
MEDICAL DEVICE DEVELOPMENT TO
GET ACCESS AND GUIDANCE.
THEN YOU EMBARK IN THE RABBIT
HOLE.
>> SO IF IT'S A CLASS 1 DEVICE
THAT IS 510K ACCEPT, IT COULD
ESSENTIALLY BE MARKETED AS A
TOY.
THERE'S HUGE TONIGHT THIS.
IT'S IMPORTANT TO UNDERSTAND
WHAT CLASS IT COULD GO INTO.
IF IT'S CLASS 1 THAT PROBLEM
DISAPPEARS.
IN TERMS OF INTERACTION, HOW
WELL IT APPROACH AND COMPLEMENT
THE SBIR.
>> I'M NOT IN THE POSITION TO
TELL YOU IT'S THE FINAL PRODUCT.
YOU CAN ENVISION INNOVATORS WHO
GET SUPPORT IF THE STRUCTURE IS
WELL EQUIPPED TO HELP THE
EVIDENCE GENERATION AND TAP INTO
THE INFRASTRUCTURE AND HAVE AN
EASIER ACCESS TO THE PATIENT
POPULATION AND EXPERTISE TO RUN
THE TRIAL SO THIS WILL FOR
COMPANIES TIME AND MONEY
INTEREST ARE THE BIGGEST
OBSTACLES.
IF WE CAN SHORTEN THE TIME THEY
CAN JUMP START TO A STRUCTURE
THAT HAS PROTOCOLS THAT ARE
STANDARDIZED AND THERE ARE WAYS
OF COLLECTING THE DATA AND
PREPARING THE PACKAGE FOR THE
FDA APPROVAL WITH EXCELLENT
QUALITY SO EVERYTHING IS GOING
TO SHORTEN THE TIME FROM SEEKING
SUBMISSION TO THE FDA AND
THROUGH APPROVAL.
THIS IS ONE OF THE POSSIBLE
VENUES.
WE'RE HOPING BY CREATING AND
CONSOLIDATING COORDINATION AND
EXISTING INFRASTRUCTURE WE CAN
HELP INNOVATORS AT ALL STAGE OF
OF THE PRODUCT DEVELOPMENT SO
THEY WILL FIND THE RIGHT SUPPORT
DEPENDING ON THE NEED WHEN THEY
APPROACH THE INFRASTRUCTURE.
>> THANK YOU, MICHELLE.
>> THANK YOU FOR THAT
PRESENTATION.
I HAVE A COUPLE QUESTIONS OR
CLARIFICATIONS.
ONE IS A CLARIFICATION.
THE FIRST IS IN TERMS OF THE
NUMBERS YOU'RE PRESENTING.
IT'S NOT THAT PEOPLE ARE NOT
TRYING TO INNOVATE IN THE
MEDICAL DEVICE PEDIATRIC SPACE.
IT'S THAT THE PROBLEM YOU'RE
SEEING IS THAT THEY'RE NOT BEING
SUCCESSFUL IN TERMS OF GETTING
FDA APPROVAL IF THEY'RE CLASS 2
DEVICE?
I WANT TO CLARIFY.
>> IT'S MULTI-FOLD AND THIS IS
HELPING ME TO CONVEY THE MESSAGE
BETTER IN THE FUTURE AND BREAK
DOWN THE DATA.
DEFINITELY, THERE IS A PROBLEM
IN NOT GETTING THROUGH THERE'S A
PROBLEM OF AN AWARENESS YOU NEED
TO START THINK IING YOU NEED YO
NEED TO SEE IF THE PATIENTS WILL
ACCEPT SUCH A SOLUTION.
IS THE REGULATORY AGENCY AWARE
OF SUCH A SOLUTION AND HOW DO
THEY CONSIDER WHAT PATH SHOULD I
EMBARK FOR REGULATORY APPROVAL.
IT'S A CLASS 1 OR 2 OR THERE IS
ALREADY SOMETHING THAT CAN
SIMPLIFY MY APPROVAL PROCESS AND
BUILD THE WHOLE PATH FOR
EVIDENCE.
AND IF THERE'S APPROVAL NO ONE
WILL USE IT BECAUSE THERE'S NO
WAY TO MITIGATE THE COST YOU ARE
SPINNING THE WHEEL.
IF WE CAN BRING TOGETHER THE
COLLECTIVE WISDOM AND RESOURCES
AND TRY TO HELP WE'RE
CONSIDERING A LOT OF THINGS.
WE'RE CONSIDERING IS THERE A WAY
OF CREATING INCENTIVES.
IN THE DRUG SPACE THERE'S BEEN
LEGISLATIVE ACTIONS TO TRY AND
PUSH INDUSTRY TO TEST TO LABEL
THEM FOR PEDIATRICS AND GETTING
A LONGER LIFE FOR THE PATENTS
AND OTHER INCENTIVES.
IT'S DIFFICULT TO IMPLEMENT
INTERVENTIONS WE NEED TO THINK
AND HERE IN A PREMATURE PHASE
BECAUSE WE'RE IN THE DISCUSSION
PHASE BUT WE THINK WHAT CAN WE
DO.
IS THERE ANYTHING AT THE
LEGISLATE YOU HAVE LEVEL OR WHAT
CAN WE CHANGE.
MAYBE IT'S NOT SOMETHING WE CAN
IMPLEMENT IMMEDIATELY BUT CAN
COME DOWN THE ROAD TO START
BUILDING SOMETHING AND HOPING
THAT THE SHIFT IN CULTURE AND
CHANGES THAT MAY COME CAN
AMPLIFY THE IMPACT BUT BRING THE
WHOLE SYSTEM TOGETHER TO HAVE
THE POWER AND STRENGTH.
RIGHT NOW IT'S SCATTERED AND
UNFORTUNATELY IT'S NOT HELPING
THE GOAL OF BRINGING SOLUTION TO
OUR PATIENTS IN NEED.
>> JUST TO CLARIFY SOME YOU
MENTIONED IS THE WHITE PAPER.
WILL IT BE AVAILABLE TO EVERYONE
AS IN MAYBE IT BRINGS TOGETHER
THE COLLECTIVE KNOWLEDGE ABOUT
THE PROCESS AND FOLKS IN THE
SPACE MAYBE THEY START DOING
RESEARCH AND NOW WANT TO
TRANSLATE OR IMPLEMENT.
IS THAT WHITE PAPER GOING TO BE
AVAILABLE?
>> IT'S AN INTERNAL DOCUMENT.
IT'S GOING TO BE THE DRAFT OF A
BLUEPRINT AND IN THE MONTHS
FOLLOWING THE FINALIZATION OF
THE WHILE THE PAPER WE WILL WORK
TO TRY AND HAVE A BLUEPRINT FOR
THE RESOURCES AVAILABLE AT THE
TIME AND PART OF THE DOCUMENTS
WILL BE IN THE PUBLIC.
THE BENEFIT FOR THE COMMUNITY
WILL BE ONCE THE INFRASTRUCTURE
IS BUILT AND START SOLICITING
ENGAGEMENT WITH THOSE SMALL
COMPANIES THAT MAY NEED ACCESS
TO THE RESOURCES.
IT'S GOING TO BE INTEGRATED.
AND YOU CAN MAXIMIZE THE IMPACT
DOWN THE ROAD.
>> START WRAPPING, MICHELLE.
I WAS GOING TO MAKE MY LAST
POINT.
THE CHILDREN'S HOSPITAL OF
PHILADELPHIA HOW DO YOU A
HOSPITAL IF THEY HAVE LIKE A PCI
INNOVATION CENTER GET INVOLVED
IN BEING AN APART OF THE
PUBLIC-PRIVATE PARTNERSHIP IS MY
LAST QUESTION.
>> THERE ARE WAYS TO ENGAGE.
THEY CAN REACH THE FOUNDATION
FOR THE NIH AND HAVE A PUBLIC
SIDE.
ONCE WE ESTABLISH THE
INFRASTRUCTURE THERE WILL BE THE
NEED TO MAYBE COMPETE AND
EVERYBODY WILL HAVE AN
OPPORTUNITY TO COMPETE AND BE
PART OF IT MAYBE IN DIFFERENT
STAGES.
I'LL STOP.
>> VERY STIMULATING AND TIMELY
DISCUSSION.
WE HAVE COLLABORATIVE WORK
AHEAD.
WE'RE A LITTLE BEHIND SCHEDULE
WHICH MEANS YOU'LL HAVE TO SKIP
DESS
DESSERT.
WE'LL HAVE MORE ON THE ARPA-H
PROGRAM FROM CAL ROBERTS AND
THERESA WILL TALK ABOUT THE
REQUEST FOR INFORMATION.
WE'LL HEAR REMARKS FROM THE
THREE MEMBERS LEAVING THE BOARD
AND FINISH UP BY LOOK FOR
COMMENTS AND INPUT FOR WHAT YOU
WANT ON FUTURE BOARD MEETINGS.
WE'LL HAVE TO HAVE AN
ABBREVIATED LUNCH.
JUST HALF AN HOUR AT THIS POINT.
12:45 EASTERN TIME WE'LL
RECONVENE.
GRAB SOMETHING QUICK AND STRETCH
AND PLEASE LEAVE YOUR CONNECTION
ON AND WE'LL LOOK FORWARD IT
SEEING YOU IN 30 MINUTES THERE
NOW.
THANK YOU.
I WILL INTRODUCE DR. ROBERTS.
>> THANK YOU.
>> DR. CALVIN ROBERTS, MY
COLLEAGUE HERE JOINED THE
ADVANCED RESEARCH PROJECTS
AGENCY FOR HEALTH, ARPA-H IN
SEPTEMBER 2023.
AND HE JOINED IT FROM THE LIGHT
HOUSE GUILD INTERNATIONAL THE
CHIEF EXECUTIVE OFFICER IT'S A
NON-FOR PROFIT ORGANIZATION THAT
PROVIDES SERVICES FOR PEOPLE WHO
ARE BLIND, VISUALLY IMPAIRED
WHICH IS INTERESTING YANG GROUND
FOR RUNNING THE ARPA-H PROGRAM.
BECAUSE OF POTENTIAL OVERLAP
WITH OUR CENTER AND ACTIVITIES
WE THOUGHT THERE'D BE NATURAL
SYNERGIES AND WOULD BE A GOOD
TIME FOR DISCUSSION.
I APPRECIATE CAL WAS ABLE TO FIT
THIS IN HIS SCHEDULE.
OVER TO YOU.
>> THANK YOU, I APPRECIATE THAT.
THANK YOU ALL FOR JOINING TODAY.
SO HERE'S MY PLAN.
I WOULD LIKE TO FIRST GIVE YOU
BACKGROUND ON ARPA-H.
SOME PEOPLE KNOW AND SOME PEOPLE
NEVER HEARD OF ARPA-H.
THEN I WANT TO GIVE YOU A COUPLE
EXAMPLES OF THE TYPE OF PROGRAMS
THAT ARE BEING WORKED ON AT
ARPA-H.
THEN TALK TO YOU A LITTLE MORE
IN DEPTH ABOUT MY PROGRAM ABOUT
WHAT I'M WORKING ON AND THEN A
COUPLE OF FINAL COMMENTS ABOUT
THE FUTURE.
WITH THAT, I'M GOING TO GO AHEAD
AND SHARE MY SCREEN.
ARPA-H IS THE ADVANCED RESEARCH
PROJECT AGENCY FOR HEALTH.
ARPA-H.
SOME PEOPLE SAY ARPA-H SOUNDS
LIKE DARPA.
DOES THIS HAVE ANYTHING TO DO
WITH DARPA.
THE ANSWER IS THIS IS CREATED IN
THE IMAGE OF DARPA.
SO TO TRY TO BE ABLE TO DO FOR
HEALTH SOME GREAT THINGS DARPA
HAS BEEN ABLE TO DO FOR DEFENSE.
MY JOB THERE IS I AM A PROGRAM
MANAGER AND I HAVE TO TELL YOU
IT'S THE BEST JOB IN THE WORLD.
THE MISSION AT ARPA-H IS TO
ACCELERATE BETTER HEALTH
OUTCOMES FOR EVERYONE.
SO EQUITY IS A BIG PART OF WHAT
WE THINK ABOUT ALL THE TIME AT
ARPA-H.
HOW CAN THE PROGRAMS THAT WE ARE
DEVELOPING BE ACCESSIBLE AND
VALUABLE TO EVERYONE?
SO THAT'S A FUNDAMENTAL AREA FOR
US.
IT'S IT STRUCTURED WE'RE A
FUNDING AGENCY AN INDEPENDENT
COMPONENT OF HHS.
WE'RE NOT PART OF NIH.
WE'RE NOT AN NIH INSTITUTE.
WE HAVE OUR OWN FUNDING.
WE HAVE OUR OWN LEADERSHIP WE
DON'T HAVE ANY LABS.
SO WE'RE NOT DOING THE WORK
THERE.
WE'RE PURELY A FUNDING AGENCY.
AND WE ARE DISEASE AGNOSTIC.
THAT'S WHAT PEOPLE HAVE A HARD
TIME UNDERSTANDING.
IT'S NOT LIKE CERTAIN PERCENTAGE
OF OUR FUNDS ARE GOING FOR EYES
AND CERTAIN PARTS FOR HEARTS AND
CERTAIN PARTS FOR CANCER.
NO.
THE WAY ARPA-H WORKS IS THE
PROGRAM MANAGERS DEVELOP THE
PROGRAMS, THE PROGRAMS COMPETE.
THE ONES THAT THE DIRECTOR
THINKS IS MOST LIKELY TO GET
FUNDED IN OUR MISSION AND OFF WE
GO.
WE BEGAN WITH A $2.5 BILLION
APPROPRIATION AND WE FUND
CONTRACTS NOT GRANTS.
WHAT WE'RE LOOKING TO DO IS TO
DEVELOP GREAT HEALTH PROGRAMS.
SO FOR MANY YEARS I WAS THE
CHIEF MEDICAL OFFICER OF A LARGE
PHARMACEUTICAL COMPANY AND
EVERYBODY USED TO USE THE WORD
R&D LIKE IT'S ONE WORD.
R&D ARE ACTUALLY DIFFERENT.
"R" IS RESEARCH.
RESEARCH EXPANDS THE AMOUNT OF
KNOWLEDGE.
STARTS WITH A PROBLEM AND GOES
IN DIFFERENT DIRECTION TO LEARN
MORE AND EXPAND WHAT WE DO.
DEVELOPMENT IS VERY DIFFERENT.
DEVELOPMENT SAYS WE HAVE A
CERTAIN AMOUNT OF KNOWLEDGE, HOW
ARE WE GOING TO GET AN OUTCOME?
WE SAY WE WANT TO BUILD A
VACCINE FOR COVID IN 180 DAYS.
HOW DO WE TAKE WHAT WE ALREADY
KNOW AND COME UP WITH A ROAD MAP
TO GET THAT INTO SNAG IS A
PRODUCT?
SO AT ARPA-H WE ARE MUCH MORE ON
THE D SIDE OF R&D OPPOSED TO
SOME OF THE INSTITUTES AT NIH
WHICH ARE MORE ON THE "R" SIDE.
IF SOMEONE ASKS ME THE
DIFFERENCE BETWEEN WHAT YOU'RE
DOING AND WHAT'S BEING DONE AT
NIH.
I TALK ABOUT THE DIFFERENCE
BETWEEN R&D AND WE DO SOME
RESEARCH MOSTLY ON THE
DEVELOPMENT SIDE.
NOW, THE LAST BULLET THE BOTTOM
CENTRIC APPROACH IS THE KEY TO
WHAT MAKES ARPA-H INTERESTING.
IT WORKS AROUND PROGRAM
MANAGERS.
WE'RE TERM LIMITED.
WE'RE HIRED FOR THREE YEARS AT
THE AGENCY'S REQUEST THEY CAN
RENEW US FOREANOTHER THREE BUT
FOR SURE BY SIX YEARS
EVERYBODY'S GONE FROM THE
DIRECTOR TO PROGRAM MANAGERS TO
MOST EVERYONE.
AND THE IDEA IS TO HAVE A
CONTINUAL FLOW OF NEW IDEAS AND
ENERGY COMING IN THE AGENCY.
THAT'S THE PLAN.
SO THIS BOTTOM'S UP APPROACH
WHAT IT DOES IS GIVE THE PROGRAM
MANAGER AN AMAZING AMOUNT OF
AUTONOMY TO MAKE DECISION.
PROBLEM FOCUSSED PROGRAM
MANAGERS.
THEY'RE PEOPLE WHO HAVE BOTH
EXPERIENCE IN MANAGEMENT,
EXPERIENCE IN EXPERIENCE IN
RESEARCH.
THEY'RE THE SO-CALLED
VISIONARIES WHO CAN SEE
ADVANCEMENTS IN HEALTH.
IT WOULD BE A RADICAL CHANGE.
WE'RE NOT LOOKING FOR ITERATIVE
CHANGES.
NOT THE GREAT NEXT MACHINE OR
DRONE BUT SOMETHING THAT'S A
DIFFERENT APPROACH TO HEALTH.
THAT'S WHAT WE'RE LOOKING FOR.
HIGH RISK, HIGH PAYOFF.
LARGE SKAUL.
THESE ARE PROJECT ARE OFTEN TOO
HARD OR TOO RISK FOR ACADEMIA OR
SOMETIMES NIH.
THESE ARE PROJECTS THAT WOULD
NOT OTHERWISE GET FUNDED.
SO THE IDEA HERE IS THAT WITH
WANT TO KEEP THE U.S. AS THE
PREMIER FOREFRONT FOR MEDICAL
RESEARCH AND DEVELOPMENT AND THE
WAY WE'RE GOING TO DO THAT IS
BEING ABLE TO ADDRESS THESE HIGH
RISK, HIGH REWARD PROGRAMS THAT
OTHERS WOULDN'T LIKELY BE ABLE
TO FUND.
SO PROGRAM MANAGERS THAT DO
EVERYTHING.
THEY DO EVERYTHING FOR THE
VISION FOR THE PROGRAM AND ONCE
THEY GET APPROVED AND MANAGING
THE PROGRAMS AND SETTING THE
METRICS AND MILESTONES TERM
LIMITS AND THE PROGRAM MANAGER
IDENTIFIES THIS DIFFICULT
CHALLENGE.
ONE OF MY FAVORITE QUOTES IS
FALL IN LOVE WITH THE PROBLEM
NOT WITH THE SOLUTION.
TO COME UP WITH A PROBLEM THAT
NEEDS TO BE ADDRESSED.
UNDERSTANDING THERE MAY BE MORE
THAN ONE SOLUTION TO THIS.
THEN GO OUT AND LAUNCH A PROGRAM
WHERE YOU WELCOME DIFFERENT
PERFORMERS WHO HAVE DIFFERENT
IDEAS OF HOW TO SOLVE THIS
PROBLEM AND MULTIPLE PERFORMERS
EACH WITH THEIR OWN IDEA OF HOW
THEY ARE GOING COME UP WITH A
SOLUTION TO THIS CHALLENGE.
NOW YOU HAVE MULTIPLE PERFORMERS
WITH THEIR OWN METRICS AND TIME
LINES AND YOU EVALUATE THEM OVER
TIME.
AND IF THEY'RE NOT ABLE TO DO IT
ON THE TIME LINE THEN DOWN
SELECTION OCCURS.
MAY START OUT WITH FOUR, FIVE,
SIX PERFORMERS AND GETS PEARED
DOWN TO ONE OR TWO TO GET TO THE
WAY OF MAKING A CHANGE IN HEALTH
CARE.
SO ARPA-H IS DIVIDE UP INTO FOUR
OFFICES DOING DIFFERENT THINGS.
I'M IN THE OFFICE CALLED HEALTH
SCIENCE FUTURES.
WHAT WE'RE TRYING TO DO IS
COMING UP WITH THOSE MOON SHOT
MEDICAL ADVANCES.
THOSE THINGS THAT ARE SO BIG AND
SO HARD AND SO COMPLICATED THAT
NO ONE HAS EVER BEEN ABLE TO DO
THEM.
SCALABLE SOLUTIONS, AND MAKE
SURE WE'RE GETTING IN URBAN
AREAS IS THE SAME AS RURAL.
WHERE PEOPLE LIVE WITHIN THE
COUNTRY AND AROUND THE WORLD TO
GET THE SAME QUALITY AND GET
THINGS OUT SO EVERYONE IS ABLE
TO ACCESS THE HIGHEST QUALITY OF
CARE.
AT PROACTIVE HEALTH WE'RE TRYING
TO KEEP PEOPLE HEALTHY.
THAT IS WHAT KIND OF PROGRAMS
COULD BE DONE AND PREVENTIVE
MEDICINE.
AND HOW TO ANTICIPATE THE BIG
CHALLENGES IN HEALTH WHETHER
THEY'RE FROM A PANDEMIC OR SOME
CHEMICAL, PHYSICAL.
WHATEVER COULD BE.
THAT POTENTIALLY COULD BE
CAUSING HEALTH PROBLEMS IN THE
FUTURE, HOW ARE WE GOING TO KEEP
PEOPLE HEALTHY?
AND FINALLY.
WE HAVE A RESILIENT SYSTEMS
GROUP.
AND ECONOMIC INSTABILITY THAT IS
SOMETHING THAT IS BIG AND BOLD
AND HAPPENING TO OUR ECONOMY AND
TO OUR WAY OF LIFE IS NOT GOING
TO INTERFERE WITH OUR HEALTH
CARE SYSTEMS.
AND THE TYPES OF PROGRAMS
THEY'RE DOING THERE ARE AMAZING
TO TRY TO MAKE SURE THAT WE'RE
ABLE TO KEEP OUR HEALTH CARE
SYSTEM GOING DESPITE
INTERRUPTIONS THAT MAY OCCUR.
ALL RIGHT, SO IF YOU CAN SEE
THIS TIME LINE, IT'S JUST KIND
OF AN EXAMPLE OF HOW FAST THINGS
ARE GOING.
SO CAN SEE WHILE ARPA-H HAS BEEN
AROUND WELL ALMOST TWO YEARS
SINCE IT WAS CREATED REALLY OPEN
FOR BUSINESS OVER A YEAR AGO AND
THE TIME LINE IS REALLY IN THE
LAST ONE YEAR.
WHAT YOU SEE ON TOP ARE NAMES OF
PROGRAMS AND I'LL GO OVER SOME
OF THOSE PROGRAMS SOON.
AND ON THE BOTTOM ARE WHAT WE
CALL PROJECTS.
SO WHAT THE DIFFERENCE BETWEEN A
PROGRAM AND PROJECT.
A PROGRAM IS ONE CREATED,
INITIATED AND DEVELOPED BY A
PROGRAM MANAGER.
SO THESE ARE THE PROGRAMS THAT
I'VE DEVELOPED AND OTHERS HAVE
DEVELOPED.
THE BOTTOM ONES ARE PROJECTS.
PROJECTS ARE ONES THAT CAME FROM
THE OUTSIDE.
SO WE HAVE AN OPEN CALL
CONTINUOUSLY THAT IF SOMEONE HAS
AN IDEA FOR A BILL BOLD PROGRAM
OR IN THIS CASE PROJECT TO BE
DONE THEY CAN DESCEND THAT IN
AND IF WE CHOOSE THAT, THEN THEY
WILL GET FUNDED IN ADDITION TO
THE BIG PROGRAMS THAT WE'RE
WORKING ON.
SO THE NAME ON THE BOTTOM ARE
PROJECTS.
THE FIRST GOES BY THE AC KNOW
NYM
NYMPH NITRO.
IN MY AGE GROUP I HAVE SO MANY
PEOPLE HAVING KNEE REPLACEMENTS
AND WEARING OUT AND
OSTEOARTHRITIS.
WE THINK WHAT IF NO ONE NEEDED A
NEW HIP OR KNEE BECAUSE THEY
DIDN'T WEAR OUT BECAUSE
OSTEOARTHRITIS GOES AWAY?
THERE'S A WAY TO REVERSE
OSTEOARTHRITIS OR MAKE SURE THE
OSTEOARTHRITIS NEVER OCCURS.
SO PEOPLE'S JOINTS STAY GOOD FOR
LIFE?
WOW.
WOULDN'T THAT BE COOL?
DOESN'T THAT SOUND LIKE A GOOD
MOON SHOT IDEA TO GET RID ARE OF
OSTEOARTHRITIS.
THAT'S A GREAT PROGRAM.
HERE'S ANOTHER ONE.
THIS IS CALLED PRECISION
SURGICAL INTERVENTION.
THIS ADDRESSES THE IDEA THAT SO
OFTEN IN CANCER SURGERY EITHER
NOT ALL THE TUMOR WAS REMOVED OR
THE TUMOR WAS REMOVED WITH
NORMAL TISSUE.
HOW CAN WE DO CANCER SURGERY IN
A WAY TO VISUALIZE WHERE THE
MARGINS ARE.
WHERE WHAT TISSUE IS CANCEROUS
AND WHAT TISSUE IS NORMAL.
ONLY REMOVE THE CANCEROUS
TISSUE.
DON'T REMOVE THE NORMAL TISSUE.
BY THE WAY, ONE OF THE BIGGEST
COMPLICATIONS OF CANCER SURGERY
IS CUTTING A MAJOR ARTERY OR B,
CUTTING OR CUTTING A MAJOR NERVE
OR PROSTATE OR BREAST SURGERY,
WHAT YOU SEE THERE IS ONE OF THE
BIGGEST COMPLICATIONS IS CUTTING
OF SENSORY NERVES.
WHAT IF YOU COULD SEE THOSE
NERVES DURING SURGERY?
SO YOU COULD WORK AROUND THEM
AND NEVER CUT THEM?
AS WELL AS BEING ABLE TO SEE THE
MAJOR VESSELS?
SO YOU WORK AROUND THEM.
HERE'S ANOTHER ONE.
APEC X.
THERE'S VIRUS INFECT HUMANS AND
WE HAVE VIRUSES FOR 17 OUT OF
275.
BECAUSE THE WAY WE MAKE VACCINES
IS YOU MAKE A VACCINE FOR A
PARTICULAR VIRUS AT A PARTICULAR
POINT IN TIME.
WHAT IF WE COULD MAKE VACCINES
THAT WOULD COVER A WHOLE FAMILY,
A WHOLE GENUS OF VIRUSES THAT
ONE VACCINE WOULD COVER 15, 20,
30 VIRUSES WITH ONE VACCINE?
AND YOU WOULDN'T NEED TO GET
BOOSTERS, WENT THAT BE AMAZING.
YOU WOULD GET TWO OR THREE
VACCINES AND WOULD COVER MOST
THE VIRUSES YOU COULD LIKELY
CATCH IN YOUR LIFE TIME.
THAT'S WHAT THEY'RE DOING AT
APECX.
HERE'S ANOTHER ONE, PRINT.
HOW ABOUT IF WE COULD 3-D PRINT
ORGANS?
IF YOU NEED A NEW HEART YOU COWL
DRAW SOMEBODY'S BLOOD, GROW THE
PARTICULAR TYPES OF CELLS YOU
NEED AND 3-D PRINT A HEART OR A
KIDNEY OR A LIVER.
IN A WAY THAT YOU DIDN'T NEED
DONORS.
YOU DON'T HAVE TO WORRY ABOUT
SOMEBODY BEING ON A WAITING LIST
OR WORRY ABOUT IMMUNOSUPPRESSANT
AND ORGANS REREJECTING BECAUSE
YOU MAKE THEM OUT OF A PERSON'S
OWN DNA.
WOULDN'T THAT BE COOL.
WHAT IF WE COULD BIO PRINT ANY
ORGAN ON DEMAND?
THAT'S WHAT THEY'RE DOING AT
PRINT.
HERE'S ONE MORE LOOKING AT THE
LYMPHATIC SYSTEM.
IT'S BEEN UNDER APPRECIATED AND
UNDER STUDIED AND THE EFFECT IT
HAS ON HEALTH HAS BEEN GREAT.
WHAT IF YOU COULD SEE THE
LYMPHATIC SYSTEM AND SEE WHAT'S
GOING ON AND VISUALIZE WHAT'S
GOING ON AND THEN YOU CAN TREAT
IT AND MAKE THINGS BETTER AND SO
THIS PROGRAM WAS LAUNCHED AND
BRIDGING ATTENTION TO THE
LYMPHATIC SYSTEM AND THE
POTENTIAL IS GREAT.
MY PROGRAM IS THEA AND THE IDEA
IS TO TRANSPLANT A WHOLE EYE
FROM A DONOR TO RESTORE VISION
TO SOMEONE WHO IS BLIND.
THIS HAS NEVER BEEN DONE.
IT'S BEEN TALKED ABOUT FOR
HUNDREDS OF.
THIS IS THE TIME WHERE IT CAN BE
DONE.
AND THE EYE IS NOTHING MORE THAN
THE INTERIOR EXTENSION OF THE
BRAIN.
THE EYE IS MADE OUT OF BRAIN
TISSUE AND ANYTHING THAT WORKS
FOR THE EYE IS LIKELY TO WORK
FOR THE BRAIN AS WELL.
SO AS WE LEARN HOW TO
POTENTIALLY TRANSPLANT EYES THEN
WHAT WE LARN HERE IS APPLICABLE
TO ALL FORMS OF NEURAL TISSUE.
SO, WE TRANSPLANT HEARTS, WE
TRANSPLANT LUNGS, WE TRANSPLANT
LIVERS AND KIDNEYS AND WHY DON'T
WE TRANSPLANT EYES?
THE ANSWER IS IT'S PART OF THE
BRAIN AND TRANSPLANTING THE EYE
WOULD BE LIKE TRANSPLANTING A
BRAIN.
IT WOULDN'T BE JUST
TRANSPLANTING THE EYE AND THE
OPTIC NEVER BUT THE OTHER
CRANIAL NERVES.
CRANIAL NERVES, 3, 4, 5, AND 6
AND ATTACH THEM WITH THE BLOOD
VESSELS AND MUSCLES.
IT'S NEVER BEEN DONE.
IF WE COULD TRANSPLANT EYES YOU
MAY BE ABLE TO RESTORE VISION.
AND THOSE IN THE FRONT AND BACK
OF THE EYE.
THERE'S RETOPATHY -- RETINOPATHY
BECAUSE DIABETES IS A PROBLEM IN
THIS COUNTRY AND THERE'S NOTHING
THAT CAN RESTORE VISION TO
PEOPLE WITH THESE CONDITIONS.
ON THE OTHER HAND CONDITIONS OF
THE FRONT OF THE EYE CATARACT,
CORNEAL DISEASE WE HAVE LEARNED
THAT THOSE ARE CONDITIONS THAT
WE CAN OPERATE ON AND ACTUALLY
RESTORE VISION.
SO WHAT WE WANT TO DO IS TAKE
WHAT WE'VE LEARNED ABOUT HOW WE
CAN TRANSPLANT THE FRONT OF THE
EYE TRANSPLANT WHOLE EYES.
THERE'S ABOUT 70 -- AND 70,000
PEOPLE EACH YEAR WOULD DONATE
EYES AND SO WHAT HAPPENS?
SO WHEN SOMEONE DIES AND THEY
WANT TO DONATE THEIR EYES, A
TECHNICIAN GOES AND RETRIEVES
THE EYES FROM THE CADAVER.
IT'S BROUGHT TO THE EYE BANK
WHERE IT'S PROCESSED AND IT CAN
BE STORED FOR AT LEAST A WEEK.
IT'S THEN BROUGHT TO THE SITE
WHERE THE SURGERY IS GOING TO
OCCUR.
CORNEA TRANSPLANT DONE BY
OPHTHALMOLOGISTS.
THE CORNEA IS IN A PLACE WHERE
REJECTION IS NOT USUAL AND
VISION RESTORED IN WEEKS TO
MONTHS.
NOW, WHEN WE START THINKING
ABOUT HOW WOULD WE TRANSPLANT A
WHOLE EYE, THAT HAS ITS UNIQUE
HURDLES.
LET'S GO THROUGH THEM.
SO WHEN WE TALK ABOUT
TRANSPLANTING WHOLE EYE WE HAVE
TO DO IT FROM ORGAN DONORS.
PEOPLE WHO ARE BRAIN DEAD OR
HAVE A FUNCTIONING HEART SO THE
EYES CONTINUE TO BE PROFUSED.
THESE ARE THE SAME PEOPLE
DONATING THEIR HEARTS, LIVERS,
KIDNEYS, EYE DONATION WOULD BE
PART OF THE PROCESS.
IN THIS CASE THE BIG DEAL IS HOW
TO REATTACH THE OPTIC NERVE AND
THE NEW DONOR EYE CAN TRANSMIT
INFORMATION TO THE BRAIN AND THE
BRAIN CAN THEN INTERPRET AS
VISION.
AND THEN THE THIRD BIG HURDLE
FOR US IS HOW ARE WE GOING TO DO
THE SURGERY.
IT TAKES A WHOLE TEAM OF
NEUROSURGEONS AND PLASTIC
SURGEONS.
IT'S A BIG SURGICAL TEAM.
NOW WE VERY TO DEAL A LOT WITH
IMMUNOLOGY BECAUSE THESE EYES
CAN REJECT AND OF COURSE THEY'RE
NOT GOING TO HAVE THE VISION
RESTORED INSTANTANEOUSLY BECAUSE
IT WILL TALK AWHILE FOR THE OPT
IC NERVE TO GROW AND HOW WILL WE
ASSESS HOW WE'LL HARVEST AND DO
THE SURGERY.
THE HURDLES BECOME THE TECHNICAL
AREAS WE'LL STUDY SO TISSUE
HARVEST AND PRESERVATION, HOW
WILL WE HARVEST THE EYES FROM
THE DONORS AND HOW TO MAINTAIN
THE EYE VIABLE FROM THE TIME
IT'S HARVESTED UNTIL THE TIME TO
PUT INTO THE DONOR AND HOW WILL
RE
WE REATTACH THE OPTIC NERVE AND
CARE FOR THEM IN THE FUTURE.
HERE'S A VIDEO OF IDEAS OF HOW
WE'RE LOOKING TO REATTACH AN
OPTIC NERVE.
SO WHAT YOU SEE IS THE OPTIC
NERVE CARRIES THE MESSAGE TO THE
BRAIN.
AND YOU LET THE ENDS GROW
TOGETHER AND TRANSMIT THE
MESSAGE.
ANOTHER WAY IS ELECTRICAL
STIMULATION.
THAT'S HOW NERVES GROW IN UTERO
AND MAYBE WE CAN DO THAT AGAIN
OR STEM CELLS ACTING AS A NEURO█
PROTECTIVE OR BRIDGE THE CELLS
TOGETHER AND GET THEM TO GROW.
AND WE GOT ABSTRACTS BEGINNING
OF MARCH AND SENT OUR NOTICES
MARCH 20th.
FULL PROPOSALS AND WE'LL
HOPEFULLY GET THE PROGRAM GOING.
BASICALLY WE'LL START OFF WITH
TECHNOLOGY WITH DEVICES AND HOW
WE'LL DO SURGERY.
AT THE END OF DAY IT'S ALL ABOUT
BRINGING OUR PROGRAMS TO MAKING
THEM AWARE OF PEOPLE WHO MIGHT
BENEFIT FROM THIS TRAINING.
PEOPLE ENGAGING THE COMMUNITY SO
PEOPLE WHO ARE BLIND AND
VISUALLY IMPAIRED AND TRAINING
AND TEACHING.
FINAL THING IN THE LAST COUPLE
MINUTES IS TALKING ABOUT
SOMETHING NEW IN THE AGENCY
WHICH IS THE SPRINT FOR WOMEN'S
HEALTH.
THIS WAS ANNOUNCED SIX WEEKS AGO
AND THE IDEA IS HOW CAN WE
QUICKLY BE ABLE TO FUND SOME
ADVANC
ADVANCES THIS IS IS COMMITTING
$100 MILLION AND IT'S A QUICK
WAY THAT WE PUT OUT FOR REQUEST
AND THE PROPOSAL DATE WAS IN
MARCH.
YOU NEEDED TO SEND THREE PAGES
WITH A SOLUTION AND THEY'LL BE
FUNDED IN THE FALL.
SO JUST AN IDEA HOW WE CAN DO
THINGS IN A STREAMLINE WAY THAT
TO TAKE GREAT IDEAS AND GET THEM
FUNDED TO GET GREAT ADVANCED.
I'LL FINISH BY A PIECE OF
ARTWORK WHICH I LOVE WHICH SITS
IN THE GALLERY IN WASHINGTON,
D.C. ACROSS FROM THE WHITE
HOUSE.
THIS PRESENT MOMENT USED TO BE
THE UNIMAGINABLE FUTURE.
YOU THINK ABOUT THINGS TODAY.
AND I THINK ABOUT THE INTERNET,
GPS, GRAPHIC USER INTERFACE ON
OUR COMPUTERS, AUTONOMOUS
DRIVING CARS WERE UNIMAGINABLE
YEARS AGO BEHIND NOW MAINSTREAM.
AT ARPA-H WHAT WARE -- WE'RE
LOOKING TO DO IS COME UP ONE THE
SAME ADVANCES THAT YEARS FROM
NOW PEOPLE SAY MY GOSH, WE USE
THIS EVERY DAY AND I APPRECIATE
YOUR TOMB.
THANKS VERY MUCH.
WE HAVE TIME FOR A COUPLE OF
QUESTIONS.
>> THANK YOU FOR YOUR
PRESENTATION.
IT'S EXCITING TO HEAR ABOUT
ARPA-H'S GOAL.
SOME OF US PUT IN SOMETHING FOR
THE PRINT TO WOMEN'S HEALTH.
IT'S ALWAYS CHALLENGING TO
FIGURE OUT WHAT CONSTITUTES THAT
NEXT LEVEL RADICAL CHANGE.
I THINK YOU PUT IT BEAUTIFULLY
IN YOUR PRESENTATION.
I GOT A BETTER SENSE OF WHAT
THAT RADICAL CHANGE IS.
IT'S ALWAYS FRUSTRATING TO LOOK
AT WHAT IS INCREMENTAL AND
TRANSFORMATIONAL AND WHAT
POSSIBLE TO FUND AND WHAT ISN'T.
TWO CLARIFICATIONS.
SINCE YOU SAID THE PROGRAM
DIRECTS ARE FUNDED FOR THREE
YEARS POSSIBLY SIX, DOES THAT
MEAN WHEN YOU PUT IN A PROPOSAL
WE SHOULD BE LOOKING AT A
THREE-ERPROPOSAL THAT WOULD BE
UNDER THAT PROGRAM DIRECTOR
BECAUSE YOU'RE IN THE SURE IF
THAT PROGRAM DIRECTOR WILL HAVE
ANOTHER THREE YEARS?
JUST WANT TO CLARIFY WHAT THAT
MEANS.
>> THE LENGTH OF TIME OF THE
PROGRAM AND PROGRAM MANAGERS ARE
NOT SYNCHRONOUS.
WHEN MY TIME SUP MY PROGRAMS
WON'T END.
THEY'LL PASS TO ANOTHER PROGRAM
MANAGER.
AND SO THAT'S A VERY GOOD POINT.
I'M NOT SURE HOW LONG THEY'RE
LOOKING FOR PROGRAMS FOR.
THE PROGRAMS I DEVELOPED ARE
MOSTLY IN THE THREE TO FIVE YEAR
TIME FRAME.
I KNOW FOR THE WOMEN'S PRINT I
THINK THEY'RE LOOK FOR SHORTER
TERM PROGRAMS TRYING TO LOOK IF
THERE AN OPPORTUNITY TO MAKE A
BIG HIT IN A RELATIVELY SHORT
PERIOD OF TIME.
>> THANK YOU.
>> I'M CURIOUS.
IS THERE A DOLLAR AMOUNT YOU
HAVE TO WORK WITHIN FOR THE
VISION OR IS THE BUDGET
DEVELOPED AS YOU MOVE ALONG?
>> SO WHEN I PROPOSED THIS TO
THE DIRECTOR OF ARPA-H I
PROPOSED A BUDGET.
AT THE END OF THE DAY IT'S THE
DIRECTOR WHO THEN SAYS HOW MUCH
THAT BUDGET IS GOING TO BE.
I CREATE THE BUDGET AND SEND IT
TO MY BOSS.
MY BOSS SAYS YAY, NAY OR NOT SO
MUCH VAINED TO THINK WHAT'S
POSSIBLE WITHIN THE AMOUNT.
>> SO THERE'S NO LIMIT IT'S JUST
WHETHER YOU CAN SELL THE IDEA IN
A WAY YOU CAN CONVINCE EVERYONE
YOU NEED THAT.
>> YES.
THANK YOU.
>> THANK YOU.
HOW DO YOU EVALUATE THAT AND HOW
IMPORTANT IS THAT IN THE
SELECTION PROCESS AND SECOND
QUESTION IS HOW DO YOU HANDLE
THE DATA SHARING?
>> FIRST QUESTION IS REGARDING
TEAM SCIENCE AND HAVING THE
RIGHT TEAM.
HOW DO YOU
>> THE KEY TO IF HE PROGRAMS IN
GENERAL IS THEY'RE TOO BIG FOR
ANYONE ONE INVESTIGATOR OR
INSTITUTION.
THE ONLY WAY THEY'LL BE
SUCCESSFUL IS IF YOU HAVE A TEAM
WORKING ON THIS.
WE PUT OUT THE DESCRIPTION OF
THE PROGRAM AND INVITE TEAMS TO
BE FORMED AND WE HAVE PROPOSERS
DAY FOR INSTITUTIONS AND
INDIVIDUALS TO COME TOGETHER AND
FORM TEAMS.
ARPA-H DOESN'T WANT TO BE THE
ONE DOING THE ORGANIZATION
BETWEEN INVESTIGATORS.
WE WANT THERE TO BE A PRINCIPLE
INVESTIGATOR NOW RESPONSIBLE FOR
THE SUB INVESTIGATORS HERE
THERE'S ONE VOICE SO FORMING
TEAMS IS REALLY IMPORTANT IN
TERMS OF HOW WE DO THIS.
PROPOSERS THERE IS THERE TO
PROMOTE TEAMS.
DATA SHARING IS SO IMPORTANT.
YOU ASK THE QUESTION BECAUSE YOU
KNOW HOW IMPORTANT DATA SHARING
IS IMPORTANT.
WE CARE ABOUT PLATFORMS FOR DATA
SHARING AND HOW TO SHARE DATA IN
A WAY THAT'S ACCESSIBLE TO ALL.
A BIG IMPORTANT COMPONENT.
THANK YOU FOR THAT.
>> AT THIS POINT WE NEED IT MOVE
ON AND GIVE THE FLOOR TO
DR. CRUZ.
AND SHE'LL BE TALKING ABOUT THE
REHABILITATION RESEARCH PLAN
RFI.
>> THANK YOU, CAL.
THE RESEARCH COMMUNITY HAS BEEN
INTERESTED IN THE SPACE AND IT'S
BETTER THAN US TRYING TO SELL
YOUR VISION.
THANK YOU FOR COMING TODAY AND
THANK YOU.
WITH A LITTLE GET BACK ON TIME
NOT TO WORRY.
I WANTED TO END OUR AGENDA WITH
GETTING MORE FEEDBACK FROM YOU.
I KNOW THIS HAS BEEN GETTING
ENGAGED BUT I WANT TO MAKE SURE
YOU HAVE ONE MORE OPPORTUNITY TO
GIVE YOUR INPUT IN OF A FREE
FORM VENUE.
WOOL TALK A LITTLE BIT ABOUT THE
RESEARCH PLAN AND THE
CONFERENCE.
SO WHEN WE ARE ENGAGING WITH THE
PUB LUCK WHERE WE WANT INPUT THE
FIRST THING WE DO IS PUT OUT A
REQUEST FOR INFORMATION WE'VE
TRIED DIFFERENT FORMATS AND THE
BASIC NOTICE GOES OUT AND PUT
ONE OUT IN FEBRUARY.
IT WAS OPEN ABOUT SIX WEEKS.
PEOPLE CAN STILL E-MAIL ME.
IT'S FINE.
WE ASKED A SERIES OF QUESTIONS
AND RELATING BACK TO OUR 2016
AND 2021 PLAN.
HOW DID THE COMMUNITY PERCEIVE
OUR PROGRESS TOWARDS THE GOALS
IN OUR RESEARCH PLAN.
WHAT AREAS OF RESEARCH SHOULD WE
BE CONSIDERING FOR THE NEXT
PLAN.
DO WE STILL NEED TO CONTINUE?
WHAT SHOULD WE RETAIN FROM OUR
CURRENT PLAN ARE THERE NEW AREAS
OF IMPACT FOR THE FUTURE AND ARE
THERE FOCUSES AREAS TO MAKE A
BIG DIFFERENCE IF WE APPLIES
RESOURCES AND EFFORTS IN THE
SHORT TERM.
THOSE ARE THE QUESTIONS WITH PUT
OUT.
I WANT TO THANK OUR CONTRACTORS
WHO HELPED ME PULL ALL THESE
RESPONSES TOGETHER AND KEEP ME
ORGANIZED.
THANK YOU TO VICKY AND DANIEL.
WE GOT 24 RESPONSE WHICH IS IS
WHAT WE USUALLY GET WHEN WE PUT
OUT AN RFI.
POST CAME FROM INDIVIDUAL
RESEARCHERS.
WE GOT SOME FROM BIGGER GROUPS
RESEARCH SPEAKING WITH ONE VOICE
FROM A RESEARCH INSTITUTION AND
A HANDFUL FROM WHAT WE CALLED
SPECIAL INTEREST AND FOUNDATIONS
OR GROUPS REPRESENTING GROUPS OF
PEOPLE THIS IS TYPICAL OF WHAT
WE SEE WHEN WE PUT OUT RFIs.
HUGE THANKS TO EVERYBODY WHO
RESPONDED.
IT'S HELPFUL GET THE INPUT EARLY
IN THE PROCESS.
THIS ISN'T THE ONLY OPPORTUNITY
TO PROVIDE FEEDBACK IN THE PLAN.
WE'LL TALK MORE ABOUT THE TIME
LINE GOING FORWARD.
THE MAJORITY WERE AROUND WHAT
ARE NEW PRIORITIES TO PUT IN THE
NEXT RESEARCH PLAN.
REMEMBER, WE'VE HAD THE SAME
THEMES FOUR EIGHT YEAR NOW AND I
EXPECTED NEW IDEAS ABOUT WHERE
WE SHOULD BE PUTTING EMPHASIS IN
THE NEXT RESEARCH PLAN.
THE OTHERS WERE ADDRESSED BY ONE
REPUBLICAN ENT.
-- RESPONDENT.
WE TRIED TO MAKE IT EASIER.
THE THEMES THAT CAME OUT FROM
THE 24 RESPONSES.
THE FIRST ONE WHICH I DON'T
THINK IS A SURPRISE IS THAT
THERE WAS A REQUEST FOR
REINSTATING THE K-12 PROGRAM NAP
RELATES TO OUR THEME ON
TRAINING, CAREER DEVELOPMENT,
INFRASTRUCTURE.
WE COVERED THAT AND THE
IMPORTANCE OF GENETIC STUDIES
AND MAYBE WE'LL BROADEN THAT TO
OMICS AND HAD PEOPLE TO COMMENT
ON THAT AND THE ROLE IN
REHABILITATION.
HEALTH DISPARITIES AND
ASSOCIATES OF HEALTH.
THE FOURTH WAS AROUND THE
ORDINANCE OF BASIC SCIENCE TO DO
THE MECCIST
MECHANISTIC SCIENCE FIRST.
AND THIS WAS A TECHNOLOGY
CONTINGENCE.
I GROUPED SEVERAL OF THOSE
TOPICS BUT TECHNOLOGY, SENSORS,
TELEHEALTH, COMMERCIALIZATION
WAS A THEME THAT CAME THROUGH.
THE SIXTH THAT CAME THROUGH THEY
WERE TALKING ABOUT THE LOCATION
THAT THE REHAB WAS DELIVERED IN
WHICH WAS A LITTLE BIT OF A
DIFFERENT SPIN THAN WE TALKED
ABOUT BEFORE.
THAT VARIES.
SOME PEOPLE WERE TALKING ABOUT
THE IMPORTANCE OF ENGAGING IN
RESEARCH IN LOW AND MIDDLE
INCOME COUNTRIES.
OTHERS WERE TALKING ABOUT REHAB
DELIVERED IN ACUTE CARE,
INTENSIVE CARE UNITS AND SKILLED
NURSING FACILITIES AND ALL THESE
DIFFERENT PLACES.
SO I GROUPED THOSE UNDER THE
HEADING OF LOCATION THERE WAS A
REMINDER THAT NIH NEEDS TO
COLLABORATE AND I HOPE THROUGH
THE MEETING YOU SAW EXAMPLES OF
COLLABORATION I HOPE IT SEEDED
IDEAS OF COLLABORATION BUT
PARTICULARLY COLLABORATIONS WITH
THE WORLD HEALTH ORGANIZATION.
WE HAVE BEEN SUPPORTIVE OF THE
REHAB 2030.
I WAS GOING GET THE YEAR WRONG.
THIS RESEARCH PLAN AND THERE'S
ANOTHER ORGANIZATION THAT WAS
CALLED OUT THAT HUN SHOULD BE
WORKING HIGH PRESSURE
NIH SHOULD BE WORK MORE WITH.
AND THEME EIGHT I GROUPED A LOT
OF DIFFERENT TOPICS THAT ALL HAD
TO DO WITH SECONDARY CONDITIONS
OR HEALTH IN GENERAL FOR PEOPLE
WITH DISABILITIES.
PARTICULARLY CALLED OUT WAS THE
IMPORTANCE OF CARDIOVASCULAR
HEALTH, PHYSICAL ACTIVITY,
MEDICATION ADHERENCE, FUNCTIONAL
COGNITION.
I REALIZE THOSE ARE DISPARATE
BUT I LUMPED THEM TOGETHER IN
HEATH ACTIVITIES MAYBE NOT
NECESSARILY TIED TO IMPAIRMENT.
THE LAST THING ISN'T REALLY
SOMETHING MCRR CAN EXECUTE THERE
WERE CALLS FOR A DISABILITY
RESEARCH OFFICE.
THAT WAS A RECOMMENDATION THAT
WENT TO THE NIH DIRECTOR AS PART
OF THE ADVISORY COUNCIL TO THE
DIRECTOR'S REPORT ON DISABILITY
ABOUT 18 MONTHS AGO.
SO THAT RECOMMENDATION IS STILL
OUT THERE AND WE DID GET SOME
COMMENTS REMINDING NIH ABOUT
THAT RECOMMENDATION.
THESE ARE REINSTATING ACTIONS IN
REGARD TO THE THEMES.
I DON'T THINK WE NEED TO REPEAT
THEM BUT WE USE THE TERM BASIC
EXPERIMENTAL STUDIES IN HUMANS
ACKNOWLEDGING THERE'S
MECHANISTIC WORK THAT NEEDS TO
BE DONE IN HUMAN SUBJECTS, IN
REHAB AND OPERATIONALIZES SOME
OF THOSE THEMES SO THANK YOU.
I'D LIKE A BIT OF A CONVERSATION
HERE.
CAN I GET YOUR REACTIONS.
ARE THERE ANY SURPRISES BY WHAT
CAME IN?
ARE THERE THINGS YOU'RE
SURPRISED THAT WAS MISSING
MICHELLE.
>> I DON'T THINK I WAS
NECESSARILY SURPRISED BY
ANYTHING PER SE.
I WASN'T SURPRISED BY ANYTHING
BUT I WAS PLEASANTLY ENCOURAGED
TO SEE THE LOCATION PIECE.
THAT'S SOMETHING I'M PASSIONATE
ABOUT IS DEALING WITH REHAB IN
LOW RESOURCED SETTINGS AND
WANTED TO SEE THEM COME UP
SETTINGS WITHOUT SIDE THE
HOSPITAL THAT HAVE COME UP
BEFORE.
THIS CENTRIC IF YOU'RE THING
ABOUT REHAB FOR ALL, HOW DO WE
RESOURCE SETTINGS.
THAT WAS -- I HOPE THAT WOULD
HAVE COME UP BUT THAT WAS
PLEASANT TO SEE THERE WERE OTHER
PEOPLE SEEKING THAT SPACE.
I WAS SURPRISED TO SEE THE
REQUEST FOR DISABILITY RESEARCH
OFFICE BUT I'M NOT SURE HOW IS
NA DIFFERENT FROM THE OTHER
ACTIONS.
I WASN'T QUITE SURE WHAT THAT
WAS ABOUT BUT IT'S NOT LIKE
SURPRISE, SURPRISE BIT A BIT OF
A PUZZLE LIKE WHAT WAS THAT
ABOUT?
THOSE ARE MY COMMENTS.
IN THE NIH OFFICE OF THE
DIRECTOR, THE OFFICE OF RESEARCH
ON WOMEN'S HEALTH, THE OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCE,
THE OFFICE OF DISEASE
PREVENTION, OF NUTRITION OF
TRIBAL HEALTH, SEXUAL AND GENDER
MINORITIES.
THERE'S A PROPOSAL TO PUT A
DISABILITY OFFICE THERE.
WE HAD NOT MOVED ON THAT BUT
THAT HAS COME UP.
THAT IS WHAT THAT'S REFERRING
TO.
>> WHAT DOES THAT DO DIFFERENTLY
TO HAVE THAT OFFICE IDENTIFIED
THERE.
>> EACH OFFICE HAS A DIFFERENT
MISSION BUT THEY'RE GENERALLY
INSTRUCTED TO COORDINATE AMONGST
NIH INSTITUTES.
SO BEHAVIORAL HEALTH FALLS
ACROSS INSTITUTES AND YOU HAVE
THE ONE PLACE TO COORDINATE AND
PUT TOGETHER STRATEGY PLANS.
-- STRATEGIC PLANS.
>> FRANCISCO.
>> I WAS A LITTLE BIT -- CAN YOU
HEAR ME OKAY?
>> YES.
>> I WAS A LITTLE BIT SURPRISED
AT THE FACT THAT THE 24 TOTAL
RESPONSES.
THAT MAY NOT BE A REPRESENTATIVE
SAMPLE.
TYPICALLY AS THESE THINGS GO,
PEOPLE WHO ARE SATISFIED WITH
THINGS OFTEN DON'T RESPOND OR
MAYBE MANY DIDN'T KNOW ABOUT IT.
I WOULD CAUTION AGAINST TAKING
THESE A TRULY REPRESENTATIVE
SAMPLE.
OF COURSE THEY'RE ALL VALID AND
I THINK PERHAPS MAYBE A SECOND
ROUND OR MORE FREQUENT SAMPLING
OF THE COMMUNITY COULD BE
ADVISEDABLE.
-- ADVISABLE.
>> ABSOLUTELY.
THIS IS ONE DATA POINT.
SO I WILL BE DOING A ROAD SHOW.
WE HAVE CONFERENCES SET UP FOR
THE FALL TO GET MORE INPUT AND
WHEN WE GET TO THE NEXT STEPS
WE'LL TALK MORE ABOUT OTHER
OPPORTUNITIES BUT YES, THERE
WILL BE MORE OPPORTUNITIES TO
GET FEEDBACK.
POINT WELL TAKEN.
THESE ARE THE FIRST VOICES NOT
THE ONLY VOICES.
BOB.
>> CAN YOU HEAR ME?
I WAS HAPPY TO SEE THE EMBRACING
OF TRANSLATION FROM BASIC
RESEARCH AND HUMAN WAS IN THE
BASIC.
I THINK IT'S IMPORTANT TO
EMPHASIZE THE INVASIVE AND STUDY
THE MECHANISMS IN A MORE
CONTROLLED MANNER ALL THE WAY TO
THE CLINIC.
AND I WOULD WANT TO EMPHASIZE
THAT I THINK A LOT OF PEOPLE IN
THE COMMITTEE COME FROM THIS
PERSPECTIVE.
MAYBE MANY HAVE WORKED
CLINICALLY AND REALIZE THE
INTERVENTIONS DEVELOPED DON'T
REALLY HAVE GREAT MECHANISMS
ESPECIALLY IN NEURO REHAB AND
COMING UP WITH TECHNOLOGIES LIKE
NEUROIMMODULATION AND WE DON'T
HAVE THE INFORMATION AND I THINK
KEEPING UP WITH THE TECHNOLOGY
IS DEPENDENT ON THE INFORMATION
OF THE MECHANISMS THAT UNDER LIE
THE MECHANISM OF THE
TECHNOLOGIES AND APPROACHES TO
CHANGING ULTIMATELY BEHAVIORS
AND FUNCTIONALITY.
>> THANKS, BOB.
YOU'LL RECALL OUR CURRENT PLAN
HAS TRANSLATIONAL RESEARCH AS
ONE OF THE THEMES.
THAT MAY BE ONE THAT WE RETITLE
OR RE-EDIT BUT MAY WANT TO
RETAIN.
>> I WAS HAPPY TO SEE THAT LAND
AND IF I'M SOUNDING A LITTLE TOO
SPECIFIC TAKE IT WITH A GRAIN OF
SALT AND GOOD FORWARD.
ONE THING THAT WASN'T MENTIONED
THAT I THINK DOES A GOOD JOB OF
IN RESEARCH IS LEARNING AND
APPLYING THINKINGS GAINED IN ONE
AREA TO ANOTHER AREA.
FOR EXAMPLE, MOTOR COMPANIES I
THINK OF THAT HERE IN DETROIT
COME UP ONE A GOOD WAY TO DO
SOMETHING AND YET SOMEBODY ELSE
IN THE SAME COMPANY ISN'T TAKING
ADVANTAGE OF THAT KNOWLEDGE THAT
HAS BEEN GAINED BECAUSE THERE'S
NOT A METHOD IN DETERMINING HOW
TO EASILY SHARE LEARNINGS.
YOU WOULD THINK OF THAT IN
DISABILITY RESEARCH AS WELL.
HOW DO WE SHARE OUR LEARNINGS
AND HELP PEOPLE UNDERSTAND THIS
CAN APPLY TO OUR AREA.
NOT SURE WHAT BUCKET THAT FALLS
IN BUT I THINK YOU HAVE A FEEL.
THAT MAY BE MORE SPECIFIC THAN
YOU WANT BUT THAT WAS MY FIRST
THOUGHT.
MY SECOND THOUGHT SI WAS PLEASED
TO SEE YOU HAD A CARDIOVASCULAR
SLANT ON ONE OF THE BUCKETS.
HE HAD MADE THE THINK
CARDIOVASCULAR, PULMONARY
SPEECH, THESE ARE NOT
NECESSARILY NSK BUT STILL HAVE
HUGE DISABILITY ASSOCIATED WITH
THAT THAT ADLs ARE COMPROMISED
AS A RESULT AND AN INTENTION OF
THAT IS -- RETURN TO WORK
RESEARCH WITH DISABLES VIA
CARDIAC OR PULMONARY OR SPEECH.
VERY LITTLE IN THAT AREA.
MY TWO SPECIFIC THOUGHTS MAY BE
MORE THAN YOU WANTED BUT I
COMMEND YOU FOR GETTING █IT
ORGANIZED.
I MUST HAVE BEEN TOUGH.
>> THANK YOU.
I DON'T KNOW HOW WELL I DID IT
BUT THANK YOU FOR THE COMMENTS.
WHAT IS OFTEN COMING UP AND WE
HAD AN TERN TRAINING ON
IMPLEMENTATION SCIENCE.
I CAN SEA THAT CONNECTING WITH
YOUR POINT ABOUT WELL, LEARNING
HOW TO IMPLEMENT OR DE-IMPLEMENT
TO BOB'S COMMENT SURFACES AND
TECHNIQUES.
WE'RE NOT DONE AND CAN WE BORROW
STRATEGIES FROM OTHER PLACES IS
A GREAT POINT.
THANK YOU.
KATHY.
>> I'M NOT SURE IF WHAT I'M
THINKING ABOUT IS ALREADY
INCORPORATED IN THE LINES BUT I
WAS THINKING THROUGH INFORMATION
OR ADDRESSING THE IMPACT OF
COMORBIDITIES.
IT MAY BE UNDER SECONDARY
CONDITIONS IF THAT'S WHAT YOU
WERE GETTING AT BUT IT COULD
IMPACT EVEN EARLY INTERVENTION
SO TRYING TO PROVIDE REHAB
EARLIER.
IT MAY BE BETTER RESULTS AND LOW
HANGING FRUIT WOULD BE
ADDRESSING COMORBIDITIES AND
UNDERSTANDING HOW THEY AFFECT.
>> THANK YOU.
I DON'T THINK THAT PARTICULAR
PHRASING CAME UP BUT I SEE THE
CONNECTING.
>> MICHELLE, ARE YOU UP AGAIN?
>> YES.
I WANT A CLARIFICATION.
THE LAST RESEARCH PLAN ENDED
2021 THE ONE CURRENTLY
PUBLISHED.
WHEN YOU ARE TRYING TO PUBLISH
THIS ONE?
>> WE NEED TO DO A RESEARCH PLAN
EVERY FIVE YEARS.
WE DID ONE IN 2016.
WE DID ANOTHER IN 2021.
SOME TIME IN 2026 THIS NEEDS TO
BE PUBLISHED.
IT TOOK ME ABOUT SEVEN MONTHS
FROM WHEN I THOUGHT WE WERE DONE
TO WHERE IT GOT THROUGH THE
CLEARANCES AND APPROVALS.
I'M HOPING WE'LL BE DONE IN 18
MONTHS TO GIVE US TIME TO GET IT
OUT.
>> DOES THAT HELP?
>> THANK YOU FOR THAT.
I WANT TO ECHO TWO THINGS I
HEARD.
THE ISSUE AROUND COMORBIDITIES.
I'VE BEEN DOING A LOT ON HIV AND
STROKE AND THINK OF OTHER THINGS
NOT NORMALLY PAID ATTENTION TO.
I'D ECHO HOW DOES THAT IMPACT
RECOVERY.
IT'S AN IMPORTANT THOUGHT.
AND THE OTHER THOUGHT ABOUT
IMPLEMENTATION SCIENCE.
HOW DOES THAT WORK SPECIFICALLY
FOR REHAB?
THERE'S BEEN TALK AROUND IT EVEN
AMONGST MY COLLEAGUES AND AS A
TURN DOING REHAB I THINK A FOCUS
AROUND -- I DON'T KNOW IF IT'S A
BUZZ WORD THAT'S COME FROM
TRANSLATIONAL WHICH I STILL
THINK IS IMPORTANT AND I AGREE
WITH STEVE WE DON'T DO THAT WELL
BUT THE IMPLEMENTATION APPLYING
THE PROCESS OF IMPLEMENTING WHAT
WE AC NEW JERSEY AS INTERESTING
OR EFFECTIVE METHODS I THINK IS
SOMETHING I DON'T KNOW IF WE
KNOW HOW TO DO WELL AS REHAB
RESEARCHERS AND NEED SOMETHING
AROUND THAT'S IMPORTANT TO
SUPPORT.
I JUST WANTED TO ECHO THAT.
LEWIS.
>> I HAD A TECHNOLOGY BLIP SO
FOR GIVE ME.
IT ECHOS WHAT WAS MENTIONED.
BY THE WAY, I DO LOVE THE
HIGHLIGHTING THE SOCIAL
DETERMINATES OF HEALTH AND LOVE
THE IDEA OF THE COMMUNITY-BASED
OR COMMUNITY-MINDED APPROACHES
GETTING OUTSIDE THE LAB.
ONE OF THE THINGS I'VE BEEN
INTERESTED IN AND I DON'T KNOW
IF THIS IS A BIG TENT KIND OF
THING OR BROAD BASED BUT
TACKLING THE ISSUE OF
REPRODUCIBILITY.
KNOWING WHY INTERVENTIONS WORK
AND DO THEY WORK IN LIMITED
POPULATIONS FOR LIMITED REASONS.
I FEEL IN MY PARTICULAR RESEARCH
AREA PARTICULARLY NOTABLE
PUBLICATION HAVE LOW SAMPLE
SIZES AND ARE DIFFICULT TO
PRODUCE BECAUSE OF TECHNOLOGY
AND IP ISSUES.
THERE'S A LOT OF COMPLEXITY IN
KNOWING IS THIS A STRONG OR WEAK
STUDY AND WHAT DO THOSE MEAN.
I WOULD LOVE TO IF THAT'S NOT
ALREADY PUT IN THERE SOMEHOW
WOULD BE A COOL AREA FOR THE
FUTURE.
>> THANKS, LEWIS.
WE MONTH MENTIONED REHAB EARLIE
WE SHOULD HAVE THEM COME IN
DECEMBER.
YOU TELL ME IF YOU WANT THEM OR
NOT.
TALK ABOUT WHAT IS AVAILABLE TO
DO BETTER SCIENCE.
THAT'S AT THE HEART OF IT.
I APPRECIATE THAT COMMENT.
THANK YOU.
DAWN.
>> I WANT TO UNDER SCORE THE
IMPLEMENTATION SCIENCE IT WAS
SOME IN RESPONSES BUT OTHERS
HAVE POINT THE IT OUT.
I WANTED TO FOCUS ON THE
SYNERGY.
I SEE SYNERGY BETWEEN
IMPLEMENTATION SCIENCE AND THE
INCREASING FOCUS ON INCLUDING
PEOPLE'S LIVED EXPERIENCES IN
THE RESEARCH PROCESS.
AND I THINK MUCH OF GOOD
IMPLEMENTATION SCIENCE BUILDS
INTERVENTIONS AND BUILDS THINGS
TO STUDY BASED ON ENGAGING WITH
THE PEOPLE WHO ARE GOING TO BE
SERVED BY IT DOWN THE ROAD.
NOT JUST THE PEOPLE WITH THE
LIVED COMMISSION BUT THOSE
TREATING THOSE PEOPLE WITH THE
LIVED CONDITION.
I SEE A NICE SYNERGY AND HOPE
THAT CONTINUES TO BE SOMETHING
WE CONSIDER IMPORTANT IN OUR
FIELD.
>> I AGREE.
THANK YOU FOR STATING IT MORE
ELEGANTLY THAN I STUMBLED ON.
BOB.
>> I WANT TO REENFORCE
IMPLEMENTATION SCIENCE BEING
IMPORTANT.
IN TERMS OF REHABILITATION IT'S
DIFFERENT THAN SOME OTHER
FIELDS.
AS I'VE BEEN THINKING ABOUT HOW
WE GO FROM CLINICAL TRIALS TO
GETTING INFORMATION WHICH IS
LASHLGLY WHAT --
LARGELY CLINICAL TRIALS TAPPING
INTO BASIC EDUCATION AND
PROBABLY TO A LARGE DEGREE
CONTINUING MEDICAL EDUCATION
SYSTEMS.
THE ONE THING THAT STRIKE ME
HAVING BEEN A THERAPIST AND
INTERACTING WITH THERAPISTS IS
WHAT THERAPISTS WANT IS THE
INFORMATION.
THEY DON'T WANT A COOKBOOK
PACKAGE APPROACH OR DEVICE TO DO
THEIR THERAPY FOR THEM.
I THINK SOMETIMES THAT'S WHAT I
SEE TRYING TO BE HANDED TO
THERAPISTS AND THEY WANT TO DO
THEIR EVALUATIONS AND DESIGN
THEIR OWN THERAPY IN A WAY THAT
MEETS THE SPECIFIC PATIENT'S
NEEDS AND THESE KIND OF
WHOLESALE PACKAGE APPROACHES I
THINK ARE NOT GOING TO
ULTIMATELY WORK OR BE ACCEPTED
IN THERAPY.
>> I'LL HAVE TO LOOK AT HOW WE
ENGAGE WITH SOME PROFESSIONAL
SOCIETIES THAT DO CMEs.
VERY IMPORTANT.
WE DON'T WANT TO CREATE THE
INFORMATION AND IT STAYS IN PUB
MED.
IF IT'S NOT GET IN THE RIGHT
PEOPLE'S HANDS, WE'RE NOT DOING
OUR JOB.
I'LL PIVOT A LITTLE BIT TO SOME
OTHER QUESTIONS I HAVE ON THE
SCREEN.
WE HAVE A LOT OF LATITUDE IN
WHAT PURPOSE WE WANT IT TO
SERVE.
OUR CURRENT PLAN IS BIG TENT.
I HOPE MOST RESEARCHERS CAN
IDENTIFY THEMSELVES IN OUR
RESEARCH PLAN THAT THEY FEEL
LIKE THEY ARE PART OF THE NIH
RESEARCH INFRASTRUCTURE.
WE CAN ALSO DO A PLAN THAT IS
MORE ABOUT TARGETING STRATEGIC
PRIORITIES.
OTHER DIMENSIONS ARE DO WE WANT
TO BE VERY VISIONARY?
I THINK WE HEARD A LOT OF
VISIONARY THINGS AT ARPA-H
VERSUS PRAGMATIC.
THAT MAY BE ANOTHER ACCESS WE
CAN THINK OF WE USE THE DOCUMENT
TO SHOW OUR SUCCESSES AND TO
SHOW OUR GROWTH.
ARE THERE ANY THINGS YOU THINK
THE FIELD WOULD FIND HELPFUL IN
THE BACKGROUND AND WHERE HAVE WE
COME THAT WE SHOULD THINK ABOUT
INCLUDING?
I HAD A COUPLE QUESTIONS OUT
THERE AND HOPEFULLY WE CAN GET
MORE CONVERSATION GOING.
THANK YOU, MICHELLE.
>> IN GENERAL I THINK BIG TENT
AND STRATEGY PRIORITIES MAY BE
THE WAY TO GO.
WITH A LITTLE BIT OF I DON'T
KNOW IF THESE ARE EXCLUSIVE
CATEGORIES BUT FEEL WE SHOULD BE
LEADING THE WAY FORWARD SO THERE
IS SOMEWHAT OF A LEVEL OF
VISIONARY MAYBE NOT LIKE YOU
HAVE TO BE ALWAYS TRANSFORMATIVE
BUT SOMEWHAT HERE'S A PATH AND
GENERAL DIRECTION WE WERE GOING
IN IN TERMS OF AN UMBRELLA.
THE IDEA OF THE SDGs OR BIG
PICTURE PATH.
WE WANT TO BE ABLE TO HAVE
REHABILITATION FOR ALL.
THIS THEORY IS IS VISIONARY BUT
UNDER THAT THERE IS PRACTICAL
STRATEGIES LIKE WHICH DIRECTION
ALLOWS US TO GET TO
REHABILITATION FOR ALL.
IN GENERAL THAT'S WHAT IT'S
ABOUT IS REHABILITATION FOR ALL.
AND ALL BEING ALL SOCIAL
ECONOMIC BACKGROUNDS TO BE A
PART OF A GLOBAL MOVEMENT IN
HEALTH FOR ALL ETCETERA.
IF THERE'S A VISIONARY THEME BUT
STILL STRATEGY PRIORITIES THAT
ALLOW RESEARCHERS TO SEE WHERE
IN THESE PRIORITIES THEY MAY
SLOT THEMSELVES IN ORE ACROSS
PRIORITIES.
I THINK IF WE STAY STRATEGIC
VISIONARY AND THEY'RE BASED ON
GAPS AND OPPORTUNITIES -- I
DON'T SEE THESE THREE THINGS AS
SEPARATE THINGS.
I SEE AS WE SHOULD HAVE A VISION
WHERE WE OUGHT TO GO WITH REHAB
LEADING TO STRATEGIC PRIORITIES
THAT IDENTIFIES GAPS UNDER THE
STRATEGIC PRIORITIES THAT WOULD
BE IMPORTANT FOR RESEARCHERS TO
BE THINKING ABOUT.
I DON'T THINK THEY SHOULD BE
SEPARATED PER SE.
>> YOU TURNED IT ON ITS SIDE.
THAT'S GREAT.
THAT'S WHY WE HAVE THE
CONVERSATION.
I WAS STRUCK BY YOUR STATEMENT
OF REHAB FOR ALL AND NOW I NEED
TO GOOGLE AND SEE IF SOMEONE'S
TAGLINED THAT BECAUSE WE'RE
GOING NEED A TITLE FOR THE
CONFERENCE.
WE'LL NEED SOMETHING TO GET
AROUND AND THAT STRUCK ME SO
I'LL MAKE SURE IT'S NOT
COPYRIGHTED OR SOMETHING.
OKAY.
ANY OTHER COMMENTS?
WE'LL HAVE MORE OPPORTUNITIES.
LET'S GO TO THE NEXT SLIDE.
NIH STAFF ARE GOING TO WORK
THROUGH FEEDBACK FROM YOU ALL.
WHAT WE KNOW ABOUT WHAT
APPLICATIONS COME IN AND OUR
EXPERTISE AND THE RESPONSE FROM
THE R FIF AND PUT TOGETHER OUR
DRAFT AND I'M TARGETING AUGUST
OR SEPTEMBER.
IT DEPENDS ON HOW BUSY THE
SUMMER IS.
WE ALREADY SOLICITED PEOPLE THAT
CAN BE PART OF A WORKING GROUP
AND GIVE US FEEDBACK BEFORE WE
BRING IT BACK IN DECEMBER.
I HAVE TWO NAMES.
IF MY DOCUMENTATION ISN'T
CORRECT FEEL FREE TO SAY YOU
DIDN'T VOL UNE -- VOLUNTEER AND
WE'RE INTERESTED IN PEOPLE WHO
WANT TO WORK WITH THE NIH TEAM.
GET FEEDBACK IN THE FALL.
AT OUR DECEMBER MEETING WE WILL
HAVE A MORE REPORT OUT AND
ANOTHER OPPORTUNITY TO GET
FEEDBACK.
I AM ENGAGING IN LISTENING
SESSION TO GET FEEDBACK FROM THE
COMMUNITY.
SO THOSE ARE THE IMMEDIATE NEXT
STEPS.
I WANTED TO GIVE YOU MORE RETAIL
ABOUT THE REHAB CONFERENCE.
SO WE DO HAVE THE NIH CONFERENCE
CENTER AT NATCHER BOOKED.
WE ARE GOING HAVE A HYBRID
OPTION SO DEPENDING ON HOW WE DO
THE AGENDA, PARTS OR ALL OF THE
IN PERSON WILL BE VIDEO CAST BUT
WE STILL HAVEN'T SETTLED ON
WHETHER WE'LL HAVE MULTIPLE
TRACKS WHICH MAY MAKE THE
VIDEOCAST MORE DIFFICULT IF WE
DECIDE TO HAVE THAT.
THE MULTIPLE-TRACK OPTION.
THERE'S AN IN-PERSON LIMIT IN
OUR MAIN AUDITORIUM OF 500
PEOPLE.
FOR REFERENCE, THE 2016
CONFERENCE WE HAD ABOUT 500
PEOPLE REGISTERED AND ABOUT 350
SHOWED UP.
SO THAT WAS PRE-COVID.
THERE IS IS THAT LIMITATION ON
THE IN-PERSON.
THE VIDEO CAST IS UNLIMITED.
SO WE ARE ALSO STARTING TO WORK
ON THAT IN PERSONALLY AT NIH.
WE HAVE A HANDFUL OF PROGRAM
DIRECTORS FROM INSTITUTES
WORKING WITH NCMRR.
WE ARE HAPPY TO HAVE THEIR
COLLABORATION BUT IF YOU HAVE
SUGGESTIONS ON THE AGENDA ANY OF
THOSE THINGS WE WELCOME THEM WE
HAD A HANDFUL OF PEOPLE TO BE
PART OF AN EXTERNAL WORKING
GROUP AND WE'RE GOING TO ENGAGE
WITH THEM OVER THE SUMMER.
SAME DISCLAIMER.
IF I PUT YOUR NAME ON THE WRONG
LIST, THAT'S MY FAULT OR
OBLIGATION HAVE CHANGED AND
YOU'RE NO LONGER AVAILABLE WE
ALSO UNDERSTAND.
THEN WE HOPE THAT GROUP WILL
REPORT OUT IN DECEMBER TO GET
EVERYBODY HYPED FOR THE MEETING
IN MARCH.
I THINK WE'RE AT TIME BUT
WELCOME QUESTIONS, FEEDBACK
THOUGHTS ON THIS PLAN.
>> I HAVE NO DOUBT WE WILL ALL
BE SENDING YOU MESSAGES AS WE GO
ALONG.
THANK YOU VERY MUCH FOR THAT.
LOTS OF GREAT POSSIBILITIES TO
THINK ABOUT.
BEFORE WE MOVE FORWARD, THANK
YOU, THERESA AND RALPH FOR ALL
YOU'VE DONE TO PUT THIS TOGETHER
AND HAVE IT BE A WONDERFUL DAY
AND TO EACH OF YOU ON THE SCREEN
FOR YOUR ACTIVE PARTICIPATION.
IT'S NOT ALWAYS EASY TO DO IN A
ZOOM FORMAT AND I THINK WE'VE
HAD GREAT DISCUSSIONS, GREAT
PRESENTATIONS AND DELIGHTED WITH
THAT.
ADD MY THANKS TO RALPH'S EARLIER
COMMENTS ABOUT THE TREMENDOUS
ASL INTERPRETERS THAT HAVE BEEN
GOING NON STOP AND TO THE
INCREDIBLE SUPPORT AND
INFRASTRUCTURE FOR THE TEAM THAT
HAS MADE THIS ZOOM MEETING GO SO
SMOOTHLY FOR ALL OF US.
I AM IN AWE AND I THINK YOU ARE
ABSOLUTELY FABULOUS.
AT THIS POINT, I WOULD LIKE TO
HAVE THE BITTER SWEET
OPPORTUNITY TO ASK CHERI AND
FLORA AND WADE FOR THEIR
COMMENTS AND THANK YOU EACH OF
YOU FOR YOUR CONTRIBUTIONS OR
YOUR SERVICE ON THIS COMMITTEE.
>> I APPRECIATE THE OPPORTUNITY
AND HONOR TO BE ON THE BOARD.
IT WILL BE USEFUL FOR ME AS A
RESEARCHER AND DEPARTMENT CHAIR.
I SURE HOPE I'VE BEEN ABLE TO
GIVE BACK TO THE BOARD AND I
LEAVE INCREDIBLY INSPIRED BY THE
COLLEAGUES I'VE GOTTEN TO MEET
WHO ARE ON THE BOARD AS WELL AS
RALPH AND THERESA THEMSELVES.
THANK YOU SO MUCH.
>> THANK YOU.
>> CHERI.
>> THANK YOU, BARBARA.
THANK YOU, EVERYONE FOR THE
OPPORTUNITY OVER THE LAST
SEVERAL YEARS.
I WANTED TO GIVE A PLUS ONE TO A
COMMENT WE MADE EARLIER WHICH IS
THAT I HAVE FELT I LEARNED AND
GAINED MORE THAN I GAVE EASILY.
I FEEL LIKE I LEFT EVERY MEETING
A LITTLE BIT MATTER AND MORE
INFORMED AND INSPIRED BY THE
KNOWLEDGE AND DEPTH OF
EXPERIENCE AND COMMITMENT TO
REHAB SHOWN ACROSS THE ENTIRETY
OF THE BOARD.
IT'S BEEN AN HONOR TO BE
INVOLVED IN THIS CRITICALLY
IMPORTANT PROCESS OF ADVISING ON
THE DEVELOPMENT OF RESEARCH
PRIORI
PRIORITIES THAT IMPACT SO MANY
AMERICANS WITH DISABILITIES AND
WONDERFUL TO SEE THE PROGRESS
OVER THE LAST SEVERAL YEARS AS
IT GOES TO CONCEPTS OF ABLISM
AND ENSURING AN ANTI-ABLIVELY
APPROACH TO OUR RESEARCH
SUPPORTED THROUGH THE NIH AND
SIGNIFICANT MILESTONES LIKE THE
DESIGNATION OF PEOPLE WITH
DISABILITIES AS A HEALTH
DISPARITIES POPULATION IN 2023.
AND THOSE TYPES OF CHANGES AND
PROGRESS IS GOING HAVE A HUGE
IMPACT IN THE FUTURE.
IT'S BEEN A REAL HONOR AND
SPECIFICALLY THANK THERESA AND
RALPH FOR YOUR PARTNERSHIP AND
COLLABORATION.
THANK YOU, EVERYONE.
I APPRECIATE IT.
>> THANK YOU.
WADE.
>> THERE'S NOT MUCH ELSE TO SAY.
THANK YOU FOR BEING OUR CHAIR
THE LAST TIME AROUND.
I WANT TO THANK RALPH AND
THERESA FOR THEIR AMAZING
LEADERSHIP.
IT'S TRULY BEEN AN HONOR.
I'VE LEARNED SO MUCH AND MADE
CONNECTIONS AND LEARNED ABOUT
NIH.
I FEEL HONORED AND PRIVILEGED TO
HAVE SOME SMALL INPUT INTO OUR
RESEARCH PRIORITIES AND
TRAJECTORIES.
IT'S HELPED ME GROW
ORGANIZATIONS LIKE MINE AND IT'S
BEEN ONE OF THE HIGHLIGHTS OF MY
CAREER AND THANK YOU FROM THE
BOTTOM OF MY HEART.
THANK YOU.
>> THANK YOU.
BEFORE WE LET EVERYBODY GO BACK
WE'D LIKE TO GET YOUR INPUT ON
POTENTIAL TOPICS YOU WOULD LIKE
US TO INCLUDE IN THE DECEMBER
MEETING.
WOE HEARD A COUPLE SUGGESTIONS.
THE READOUTS FROM THE WORKING
GROUPS.
THE REHAB PRESENTATION AND WHAT
OTHER THINGS WOULD YOU LIKE US
TO BRING TO IT?
IMPLEMENTATION SCIENCE WE'RE
SEEING.
MUSHL, THANK YOU.
--
MICHELLE, THANK YOU.
>> I'M ALSO GOING TO PUT ON
BLAST THAT NEXT YEAR WE HAVE SIX
MEMBERS RETIRING.
THIS YEAR WE HAD THREE.
NEXT YEAR WE'LL HAVE SIX.
THAT MEANS WE HAVE SIX
OPPORTUNITIES TO HEAR SCIENTIFIC
PRESENTATIONS FROM YOU ALL.
AND I CAN'T SEE WHY WE WOULDN'T
BUT WE'LL BE IN PERSON AND HAVE
THE FULL DAY AND A HALF.
WE HAVE MORE TIME TO WORK WITH
SO IF YOU'RE CYCLING OFF IN
2025, THIS IS YOUR NOTICE WE'RE
GOING TO COME ASK YOU TO PRESENT
ON YOUR EXCELLENT WORK.
>> SEVERAL COMMENTS ARE COMING
UP IN THE CHAT.
UPDATE ON THE IMPLEMENTATION OF
THE CHANGING REVIEW CRITERIA.
A.I. IN REHAB.
RESEARCH TO WORK RESEARCH.
STEVE.
KATHY, CENTRALIZED TRIALS IN
REHAB.
FRANCISCO.
>> YEAH, I JUST WANTED TO
MENTION THE IDEA OF A.I. IN
REHAB AND LARGE LANGUAGE MODELS
AND THEIR APPLICATIONS.
THIS IS A VERY FAST MOVING AREA
THAT I AM SURE YOU CAN HAVE A
WAY TO HELP US AND OTHERS
UNDERS
UNDERSTAND.
>> I THINK WE HAVE PLENTY TO
WORK WITH.
>> WE HAVE A VERY FULL PANEL OF
SUGGESTIONS AND I'M VERY
GRATEFUL.
ANY CLOSING REMARKS, THERESA,
RALPH?
>> JUST A HUGE HUGE THANK YOU TO
ALL OF YOU FOR ENGAGING WITH US.
TO BARBARA FOR LEADING THE
CONVERSATIONS AND MODERATING THE
DISCUSSIONS.
NONE OF THIS HAPPENS WITHOUT
RALPH.
I THANK HIM IMMENSELY FOR ALL
THE COORDINATION HE DOES BEHIND
THE SCENES MONTHS AHEAD OF TIME
TO GET US HERE.
WE'VE HAD OUR WONDERFUL
INTERPRETERS.
WE HAVE ALSO HAD A SLEW OF
PEOPLE MAKING SURE THE ZOOM
WORKED AND THE SLIDES ARE SHARED
AND NIH VIDEOCAST WERE ALL
HAPPENING AND A HUGE THANKS TO
THE I.T. SUPPORT THAT GOES INTO
THESE MEETINGS.
AND THEN ALSO WE HAVE A NEW
OFFICE OF COMMUNITY MANAGEMENT
SET UP.
I WANT TO THANK THE PEOPLE WHO
MAKE SURE ALL OF YOUR PAPERWORK
IS DONE AND COOP US ON THE
STRAIGHT AND NARROW WITH THAT.
A BIG THANKS TO THOSE STAFF AT
NIH AS WELL.
RALPH, DID YOU WANT TO ADD
ANYTHING?
>> I JUST WANT TO THANK THE
BROADER AUDIENCE WE HAVE.
BOTH THE IMMEDIATE BOARD YOU
NETWORK WITH AND THE LARGER
AUDIENCE WHO WATCHES OUR
MEETINGS.
I HOPE WE'RE STAYING RELEVANT
AND HITTING ON SOME ISSUES THAT
REALLY MATTER TO SUPPORTING
PEOPLE WITH DISABILITIES,
SUPPORTING FAMILIES, SUPPORTING
REHAB RESEARCH.
WE ARE TRYING TO MAKE SURE THAT
WE'RE CONNECTING TO ISSUES THAT
MATTER AND HAVING THESE BOARD
MEETINGS KEEPS IT GOING.
COLLEAGUES, WE'RE ALWAYS WELCOME
TO HAVE INPUT AND WELCOME
COMMUNICATION AND NOT JUST THE
BOARD MEETINGS BUT ANY TIME
BEYOND THAT IS OUR JOB.
WE'RE PAID FROM YOUR TAX DOLLARS
BUT THE TWO DAYS HAVE BEEN
GREAT.
A LOT OF GREAT ENERGY.
I'M SORRY IT'S BEEN VIRTUAL BUT
YOU FOLKS HAVE BEEN CONNECTED SO
WE APPRECIATE THAT AND LOOK
FORWARD TO OUR MEETING.
AS YOU KNOW WE ALWAYS MEET THE
FIRST MONDAY AND TUESDAY OF
DECEMBER AND IN MAY.
THANKS AGAIN. 4627 03:44:05,732 I GUESS WE'RE CLOSED.