>> THIS MEETING OF THE BOARD AND
BELATED HAPPY NEW YEAR.
I'D LIKE TO WELCOME OUR BOARD
MEMBERS WHO ARE ATTENDING TODAY
IN PERSON.
PARTICIPATING VIA ZOOM ARE
DR. SHERIN DEVASKAR -- AND ALSO
AS ALWAYS I'D LIKE TO WELCOME
DRS. TABAK AND SCHOR WHO ARE
WITH US IN PERSON ALONG WITH
MANY OTHER NIH AND CLINICAL
CENTER LEADERS ATTENDING VIA
ZOOM.
WE ALSO WELCOME OUR COLLEAGUES
FROM THE NIH COMMUNITY AND
MEMBERS OF THE PUBLIC WHO ARE
JOINING OUR LIVE VIDEOCAST
SESSION.
SO FIRST ON BEHALF OF THE BOARD,
I WANT TO EXTEND A SPECIAL THANK
YOU TO DR. NINA SCHOR, WHO HAS
AGREED TO SERVE AS OUR
DESIGNATED FEDERAL OFFICIAL AS
WELL AS EXECUTIVE SECRETARY.
PRIOR TO ACCEPTING THIS ROLE,
DR. SCHWETZ FULFILLED THIS
POSITION AND WE'LL HEAR FROM DRN
AT NIH.
SO WITH THAT LIKED TO WELCOME
DR. TABAK.
THANK YOU FOR BEING WITH US ONCE
AGAIN, AND WE'LL BEGIN WITH YOUR
SLIDES AND AS ALWAYS, WE LOOK
FORWARD TO YOUR UPDATES.
>> THANK YOU SO MUCH AND GOOD
MORNING, EVERYBODY.
THIS MEETING IS A BR BIT OF A
TRANSITIONAL MEETING.
AS HAS ALREADY BEEN ALLUDED TO,
DR. SCHOR GOING FORWARD WILL BE
THE DESIGNATED FEDERAL OFFICIAL.
WHAT THAT MEANS IN ENGLISH IS
THAT I HAVE BEEN RELIEVED OF
THAT DUTY, WHICH I REINHERITED
BACK FROM DR. SCHWETZ, AND I'LL
EXPLAIN AS WE GO THROUGH THE
SLIDES HOW THAT OCCURS.
SO IF I CAN HAVE THE NEXT SLIDE,
PLEASE.
I'LL TALK ABOUT LEADERSHIP
CHANGES, SOME AWARDS OUR STAFF
HAVE RECEIVED, EVENTS, AND
REALLY FOCUS ON SOME OF THE
EFFORTS THAT WE HAVE BEEN
ENGAGED IN TO SUPPORT
INDIVIDUALS WITH DISABILITIES IN
THE BIOMEDICAL RESEARCH
WORKFORCE.
SO THE BIG CHANCE IS THE
APPOINTMENT OF THE PERMANENT NIH
DIRECTOR, DR. MONICA
BERTAGNOLLI, WHO SENDS HER
REGRETS FOR NOT BEING HERE
TODAY.
SHE IS IN COLORADO, ADDRESSING
THE AAAS MEETING IN A FEW HOURS,
MAYBE AN HOUR OR SO.
AND DR. BERTAGNOLLI, AS I THINK
YOU ALL KNOW, IS THE FIRST
SURGEON TO BE NAMED AS NIH
DIRECTOR AND IS ONLY THE SECOND
WOMAN TO BE NAMED TO THIS ROLE.
WITH DR. BERTAGNOLLI'S
APPOINTMENT AS NIH DIRECTOR, I
MOVED FROM THE ACTING DIRECTOR
ROLE TO THE PRINCIPAL DEPUTY
ROLE, WHICH I HAVE HAD THE
PRIVILEGE OF SERVING IN FOR A
NUMBER OF YEARS.
DR. TEAR A SCHW TARA SCHWETZ MOA
NEW ROLE, WHICH I'LL DESCRIBE IN
A MOMENT, AND SO IT'S THOSE
MUSICAL CHAIRS THAT LEAD US TO
THESE VARIOUS CHANGES.
SO IF I CAN HAVE THE NEXT SLIDE,
PLEASE.
SO TARA HAS BEEN NAMED AS THE
NIH DEPUTY DIRECTOR FOR PROGRAM
COORDINATION, PLANNING AND
STRATEGIC INITIATIVES.
THE ACRONYM IS DPCPSI.
ONLY AT NIH DO YOU HAVE ACRONYMS
LIKE THIS.
IT TURNS OUT THIS IS PROBABLY
THE LARGEST DIVISION WITHIN THE
OFFICE OF THE DIRECTOR, AND IT
IS HOME TO MANY OF THE THEMATIC
OFFICES, THE OFFICE OF AIDS
RESEARCH, THE OFFICE OF RESEARCH
ON WOMEN'S HEALTH, THE OFFICE OF
SEXUAL AND GENDER MINORITY.
I MEAN, THERE'S A WHOLE SERIES,
I THINK IT'S 14 WHEN YOU COUNT
THEM UP, MAYBE 15, I LOSE COUNT,
BUT DR. SCHWETZ IS NOW IN THAT
ROLE, AND WHICH IS WHY I HAVE
REINHERITED FOR THIS MEETING TO
BE THE DESIGNATED OFFICIAL BUT
DR. SCHOR WILL BE DOING THAT
GOING FORWARD.
WE ALSO HAVE A NEW DIRECTOR OF
THE NATIONAL CANCER INSTITUTE,
SO DR. BERTAGNOLLI HAD BEEN THE
DIRECTOR OF THE CANCER
INSTITUTE.
SHE MOVED FROM THAT ROLE TO THE
DIRECTORSHIP OF NIH.
DR. KIMRYN RATHMELL WAS NAMED BY
THE PRESIDENT AS DIRECTOR OF THE
NCI.
SHE HAS HIT THE GROUND RUNNING
AND WE ARE DELIGHTED TO HAVE
KIMRYN HERE AS WELL.
WE HAVE JUST ANNOUNCED THE
APPOINTMENT OF A NEW DIRECTOR
FOR THE CENTER FOR INFORMATION
TECHNOLOGY, DR. SEAN MOONEY WHO
WILL BE JOINING US MID TO LATE
MARCH.
SEAN WILL BE COMING FROM THE
UNIVERSITY OF WASHINGTON AND WE
ARE CERTAINLY LOOKING FORWARD TO
HIS LEADERSHIP.
DR. D'SOUZA HAS BEEN INTERIM
DIRECTOR OF CIT.
HE HAS DONE A SPECTACULAR JOB AS
INTERIM DIRECTOR AND WE'RE
GRATEFUL FOR ALL OF HIS SERVICE.
DR. LYRIC JORGENSON HAD BEEN THE
ASSOCIATE DIRECTOR FOR THE
SCIENCE POLICY OFFICE AT NIH,
AND FOLLOWING A SEARCH WAS NAMED
TO THAT POSITION PERMANENTLY.
SO WE ARE DELIGHTED TO BE ABLE
TO ANNOUNCE THAT TO ALL OF YOU
TODAY.
WE HAVE A NEW ASSOCIATE DIRECTOR
FOR BEHAVIORAL AND SOCIAL
SCIENCES RESEARCH, DR. JANE
SIMONI.
THIS IS ONE OF THOSE OFFICES IN
DPCPSI AND JANE RECENTLY JOINED
US.
AND WE HAVE AN ACTING ASSOCIATE
DIRECTOR FOR AIDS RESEARCH,
DR. DIANA FINZI, WHO WE HAVE
BORROWED FOR A BRIEF PERIOD OF
TIME AND WE ARE ENGAGED IN AN
ACTIVE SEARCH FOR A PERMANENT
DIRECTOR.
AND JOHN BURKLOW, WHO I THINK
MANY OF YOU KNOW, WHO HAD BEEN
THE DIRECTOR OF OUR
COMMUNICATIONS OFFICE FOR MANY
YEARS, HAD BEEN SERVING AS THE
ACTING CHIEF OF STAFF, AND NOW
HAS BEEN NAMED TO THAT POSITION
PERMANENTLY.
SO NOW WE GET TO BRAG A LITTLE
BIT ABOUT SOME OF OUR
COLLEAGUES.
THIS IS THE MOST FUN PART OF THE
WHOLE MEETING, AT LEAST FOR ME.
SO FIRST, THE CLINICAL CENTER'S
OWN STEVE ROSENBERG WAS AWARDED
THE NATIONAL MEDAL OF TECHNOLOGY
AND INNOVATION.
HERE YOU SEE DR. ROSENBERG WITH
PRESIDENT BIDEN GETTING READY TO
RECEIVE THIS AWARD.
THIS IS A BIG DEAL, OKAY, IN
CASE YOU WERE WONDERING, AND WE
ARE VERY, VERY PROUD OF STEVE
AND OBVIOUSLY RICHLY, RICHLY
DESERVED.
>> WHEN WAS THAT?
IS
>IS>> WHEN WAS THAT?
DO YOU RECALL?
IT WAS SEVERAL MONTHS AGO.
NEXT, PLEASE.
TWO OF THE NOBLE LAUREATES THIS
YEAR, PHYSIOLOGY OR MEDICINE ARE
NIH GRANTEES FOR THEIR WORK, OF
COURSE, IN FIGURING OUT HOW TO
STABILIZE MRNA.
THAT SORT OF TURNED OUT TO BE AN
IMPORTANT DISCOVERY.
ALTHOUGH AT THE TIME, MANY
PEOPLE WERE SKEPTICAL THAT IT
WOULD HAVE ANY REAL VALUE.
IN ADDITION TO HONORING THE
NOBLE LAUREATES, OF COURSE IT
ALSO GIVES ME THE OPPORTUNITY TO
REMIND EVERYBODY THAT BASIC
RESEARCH REALLY DOES MATTER.
AND OBVIOUSLY THIS IS ANOTHER OF
MANY, MANY EXAMPLES.
AND THEN WE'VE DONE VERY WELL
REGARDING NIH STAFF BEING
ELECTED TO VARIOUS PARTS OF THE
NATIONAL ACADEMIES.
AS YOU SEE, ANDRE AND JOHN,
MEMBERS OF THE NATIONAL ACADEMY
OF SCIENCES.
BRUCE TROMBERG ELECTED VERY
RECENTLY TO THE NATIONAL ACADEMY
OF ENGINEERING, AND THEN TWO OF
OUR INSTITUTE DIRECTORS, MIKE
CHIANG AND ERIC GREEN ELECTED TO
THE NATIONAL ACADEMY OF
MEDICINE, WHICH A LONG TIME AGO
WAS KNOWN AS THE INSTITUTE OF
MEDICINE, IN CASE ANYBODY IS
WONDERING WHAT THIS NATIONAL
ACADEMY OF MEDICINE IS.
SO CONGRATULATIONS TO ALL OF
THESE FOLKS.
OKAY.
SOME EVENTS NEXT.
THIS IS A PRETTY BIG DEAL.
THIS IS AN INITIATIVE ON WOMEN'S
HEALTH RESEARCH, AND AS YOU SEE,
PRESIDENT BIDEN IS SIGNING THIS
PROCLAMATION, EXECUTIVE ORDER,
AND FLANKED BY A NUMBER OF
FOLKS, INCLUDING SECRETARY
BECERRA, DR. BERTAGNOLLI, AND
DR. JANINE CLAYTON.
OBVIOUSLY EVERYBODY VERY, VERY
PLEASED ABOUT THIS.
AND STAY TUNED, THERE'S GOING TO
BE A LOT OF ACTIVITY IN THIS
SPACE GOING FORWARD.
WE'RE VERY, VERY EXCITED.
SO THIS WAS A VERY FUNNY TIME.
I WAS STILL ACTING DIRECTOR OF
NIH AND I WAS SAYING TO THE
FIRST LADY, SO COULD YOU HURRY
IT UP?
BUT NO, THAT'S NOT REALLY WHAT I
WAS SAYING.
BUT AS YOU CAN SEE,
DR. BERTAGNOLLI WAS WITH US
ALONG WITH JIM, AND JENNY LUCCA
FROM THE CHILDREN'S INN,
WELCOMING THE FIRST LADY AND --
I'M NOT EXACTLY SURE WHAT THE
TECHNICAL TERM IS, BUT FROM
AUSTRALIA, HER COUNTERPART.
AND THEY WERE VISITING REALLY
THE CLINICAL CENTER AND THE
NATIONAL CANCER INSTITUTE, AND I
THINK THREE DAYS LATER,
DR. BERTAGNOLLI BECAME THE
DIRECTOR.
SO -- BUT IT WAS WONDERFUL TO
WELCOME THEM.
OKAY.
AND THEN FINALLY, AND OF COURSE
A TOPIC OF VERY SIGNIFICANT
IMPORTANCE, IS WHAT WE'RE DOING
IN TERMS OF TRYING TO SUPPORT
INDIVIDUALS WITH DISABILITIES IN
THE BIOMEDICAL RESEARCH
WORKFORCE.
ONE OF THE THINGS WE HAVE HEARD
FROM MANY STAKEHOLDERS IS THAT
OUR CURRENT MISSION STATEMENT,
WHICH IS DISPLAYED ON THE LEFT,
IS OUT OF TOUCH WITH SOME
CURRENT THINKING AMONG MANY, NOT
ALL, AMONG MANY IN THE
DISABILITIES COMMUNITY.
AND SO YOU SEE THE STATEMENT
THAT IT ENDS WITH -- AND REDUCE
ILLNESS AND DISABILITY.
AND THERE ARE MANY IN THE
DISABILITY COMMUNITY WHO FEEL
THAT THIS IMPLIES SOMEHOW THAT
THERE'S -- THAT THEY ARE
DEFECTIVE OR THERE'S SOMETHING
WRONG WITH THEM, AND THEY REALLY
DON'T FEEL THAT THEY NEED,
QUOTE, FIXING.
WE HAVE ISSUED A REQUEST FOR
INFORMATION ABOUT THIS TO GET A
BETTER UNDERSTANDING OF HOW THE
WHOLE COMMUNITY OR AT LEAST AS
MANY PEOPLE WHO ARE WILLING TO
CONTRIBUTE THEIR THOUGHTS FEEL.
WE HAVE A PROPOSED REVISION
WHICH WOULD END TO OP MIEZ
HEALTH AND PREVENT OR REDUCE
ILLNESS FOR ALL.
APPARENTLY MANY PEOPLE HAVE
TAKEN UMBRAGE AT THE FACT THAT
IN APPROPRIATING APPROPRIATE --G
THIS REVISION, WE TOOK OUT
"LENGTHEN LIFE," AND THAT HAS
CONCERNED A LOT OF PEOPLE.
THEY HAVE MISINTERPRETED THAT TO
MEAN ALL SORTS OF THINGS THAT
ARE NOT CORRECT, AND SO WE'RE
GOING TO OBVIOUSLY RE-THINK THAT
"LENGTHEN LIFE" PIECE OF THIS.
BUT THAT'S WHAT OUR WORKING
DOCUMENTS ARE, THE CURRENT
VERSUS THE PROPOSED.
SO WE DID SEND OUT A REQUEST FOR
INFORMATION INVITING COMMENTS
AND SUGGESTIONS.
THIS CLOSED BACK IN NOVEMBER.
WE HAD A VERY STRONG RESPONSE.
WE ARE ANALYZING ALL OF THE
RESPONSES.
I THINK IT'S QUITE CLEAR FROM
THE RESPONSES AND THE RANGE OF
RESPONSES THAT WE'VE RECEIVED
THAT WE WILL PROBABLY NEED TO DO
ADDITIONAL FACT-FINDING THROUGH
THE USE OF FOCUS GROUPS OR TOWN
HALL MEETINGS OR ROUNDTABLE
DISCUSSIONS, PERHAPS ALL OF THE
ABOVE, BECAUSE NOT SURPRISINGLY,
THERE WAS NO ONE VOICE THAT
SPEAKS FOR THE DISABILITY
COMMUNITY SINCE IT'S SO
HETEROGENEOUS.
BUT WE ARE DETERMINED TO TRY AND
GET THIS MORE UPDATED TO REFLECT
AT LEAST SOME COMMON CONSENSUS
THAT WILL EXIST, AND SO STAY
TUNED, WE WILL BE BACK TO YOU OR
I SHOULD SAY DR. SCHOR WILL BE
BACK TO YOU TO TELL YOU WHERE
THIS STANDS IN THE FUTURE.
>>
[INAUDIBLE QUESTION ?CHT
>>
>> OH, INDEED.
IN FACT, IN SEPTEMBER, NIMHD
ISSUED A FUNDING OPPORTUNITY
ANNOUNCEMENT FOR RESEARCH ON
APPROACHES AND INTERVENTIONS TO
ADDRESS THE INTERSECTION OF
DISABILITY, RACE, ETHNICITY AND
SOCIOECONOMIC STATUS.
HEALTH DISPARITY DESIGNATIONS
ARE THE PURVIEW OF THE DIRECTOR
OF THE NIMHD IN CONSULTATION
WITH THE DIRECTOR OF HRQ.
AND DR. PEREZ-STABLE DID
DESIGNATE DISABILITIES AS A
HEALTH DISPARITY GROUP, AND AS
ONE RESPONSE TO THIS, THERE ARE
A NUMBER OF OTHERS THAT ARE
BEING PLANNED, THEY HAVE HAD
THIS FUNDING ANNOUNCEMENT OUT,
AND WITH A PRETTY GOOD RESPONSE.
SO THERE IS BOTH EXPERTISE AND
INTEREST IN THE RESEARCH
COMMUNITY TO BEGIN TO ADDRESS
THESE THINGS IN A MORE FORMAL
MANNER.
AND SO THERE IS A GREAT DEAL
MORE -- WHAT WE HAD REFERRED TO
AS DEI FOR SO LONG IS NOW DEIA,
TO INCLUDE ACCESSIBILITY, AND I
THINK OBVIOUSLY APPROPRIATELY
SO, AND OUR OWN COMMUNITY HERE
WITHIN NIH HAS BEEN VERY ACTIVE
IN PROVIDING US WITH THEIR
INPUT, WHICH HAS BEEN INVALU
INVALUABLE.
AND AGAIN, MIRRORS THE
HETEROGENEITY THAT EXISTS IN THE
ENTIRE COMMUNITY.
SO IT'S NON-TRIVIAL, IT'S
COMPLICATED SETS OF ISSUES.
THE MOST IMPORTANT THING, OF
COURSE, IS WHAT CAN WE DO TO
ENHANCE THE LIVES OF ALL
INDIVIDUALS, INCLUDING THOSE WHO
HAVE A DISABILITY.
SO WE DO HAVE A DISABILITY
SUBGROUP OF OUR DEIA WORKING
GROUP, AND THEY ARE FOCUSING ON
THINGS RELATED TO THE CULTURE OF
VARIOUS DISABILITY COMMUNITIES
ON ABLEISM, THAT IS, THOSE
WITHOUT DISABILITIES, SORT OF
IMPLYING THAT, WELL, YOU KNOW,
WE HAVE TO FIX YOU, WE HAVE
TO -- AND THIS IS SOMETHING THAT
FOR MANY IS NOT ACCEPTABLE.
THEN JUST IN GENERAL, OUR
RESEARCH POLICIES AND SYSTEMS TO
ENSURE THAT WE ARE INCLUSIVE OF
ALL.
I MEAN, JUST TO GIVE YOU ONE
VERY SIMPLE EXAMPLE OF SOME OF
THE RESEARCH THAT WAS INFLUENCED
IN A VERY POSITIVE WAY BY ALL OF
THESE EFFORTS IS WE WERE
INSTRUMENTAL IN CREATING A
NUMBER OF POINT OF CARE
DIAGNOSTIC TESTS FOR COVID.
FINALLY SOMEBODY SAID, WELL,
THESE TESTS ARE GREAT, BUT IF
YOU ARE SIGHT-IMPAIRED, THEY
DON'T DO VERY MUCH FOR YOU.
OH!
SO, YOU KNOW, THE METAPHORICAL
LIGHT BULB GOES OFF.
SO NOW NIBIB HAS DEVELOPED AN
APPROPRIATE SOLUTION TO THAT,
WHERE THE TEST READS OUT WITH AN
AUDITORY SIGNAL AND SO FORTH.
AND YOU CAN SEE HOW IN SO MANY
INSTANCES, HOWEVER WELL
INTENDED, WE DON'T QUITE MAKE
THE MARK.
FORTUNATELY, AND I HOPE THIS
CONTINUES TO BE ENHANCED, BY
REACHING OUT TO THE VARIOUS
COMMUNITIES AND INCREASING THE
DIALOGUE, WE WILL BECOME BETTER
EDUCATED AND, THEREFORE, WE WILL
BE ABLE TO RESPOND IN A MORE
APPROPRIATE MANNER.
SO THIS HAPPEN A VERY GOOD
OPPORTUNITY FOR ALL OF US.
SO WITH THAT, I WILL SAY WE ARE
NOW GOING TO HAVE THIS
TRANSITION WHERE THE HOSPITAL
BOARD WILL BE BROUGHT TO THE
CLINICAL CENTER.
DR. SCHOR WILL SERVE THIS
DESIGNATED OFFICIAL ROLE GOING
FORWARD, AND WHILE I'M SURE
DR. BERTAGNOLLI WOULD WELCOME AN
INVITATION FOR A FUTURE MEETING,
INDEED THE TYPICAL CADENCE WILL
BE THAT DR. SCHOR WILL PERFORM
THIS OPENING DUTY AS I HAVE.
WITH THAT, I THANK YOU ALL AND
TURN IT BACK TO THE CHAIR.
>> WELL, DR. TABAK, THANK YOU SO
VERY MUCH.
I THINK WE ALL WANT TO THANK YOU
VERY MUCH FOR YOUR TIME SPENT
WITH THE BOARD AND NEVER SAY
NEVER, YOU'RE WELCOME BACK AT
ANY TIME, SO THANK YOU VERY
MUCH.
AND WITH THIS I'D LIKE TO TURN
IT OVER TO DR. JIM GILMAN, THE
CEO --
>> I'D LIKE TO START BY LETTING
YOU ALL KNOW THAT DR. RATHMEL,
THE NATIONAL CANCER INSTITUTE
DIRECTOR AND IS THE CHAIR OF THE
CLINICAL CENTER GOVERNING BOARD,
WHICH IS THE GROUP THAT FUNDS
THE CLINICAL CENTER, APPROVES
OUR BUDGET, HAS ALSO JOINED US.
IT'S VERY GOOD TO HAVE HER HERE,
AND I'M NOT SURE HOW LONG SHE'LL
BE ABLE TO BE WITH US BUT HOPE
YOU GET A CHANCE TO MEET HER.
AND AS LARRY SAID, HAS HIT THE
GROUND RUNNING ESPECIALLY TAKEN
HOLD OF SOME CONCERNS WE HAVE
RELATED TO THE -- MORE OF THE
2025 BUDGET THAN THE 2024 BUDGET
TO TRY TO HELP US BE ABLE TO
MEET SOME CHALLENGES THAT WE SEE
IN THAT BUDGET IN ORDER TO
CONTINUE TO DO WHAT WE DO IN THE
CLINICAL CENTER.
SO VERY HAPPY TO HAVE
DR. RATHMEL HERE.
AND IN TERMS OF DR. TABAK'S
TRANSITION, I'M USED TO PEOPLE
IN MY LEADERSHIP CHAIN WHO ARE
WILLING TO TELL THE TRUTH AND TO
BE REALISTIC AND TO LISTEN TO
WHAT I THINK ARE REALISTIC
ISSUES, AND DR. TABAK HAS ALWAYS
BEEN THAT FOR THE LAST SEVEN
YEARS FOR ME.
AND I'VE MADE MY OWN TRANSITION
OUT OF THE ACTING DIRECTOR'S
ROLE.
I MADE A TOKEN OF MY -- GAVE HIM
A TOKEN OF MY APPRECIATION AND I
WON'T GO INTO THAT HERE BUT IT
IS -- BUT THE TOKEN IS MY
HIGHEST ESTEEM FOR PEOPLE THAT I
HAVE LOOKED UP TO.
AND SO LARRY PERSONALLY AND
PUBLICLY, THANKS SO MUCH.
I THINK WE'VE COVERED THIS
PRETTY WELL BY NOW.
SO I'LL -- THIS SLIDE WILL GO
PRETTY FAST HERE.
AND YOU ALL KNOW THAT DR. SC
DR. SCHOR -- DR. SCHOR AND I
CONNECTED NOT TOO LONG AFTER HER
ARRIVAL HERE AT NIH FROM
ROCHESTER, NEW YORK, AND AS SORT
OF WE WERE KIND OF NIH OUTSIDERS
AT THE OUTSET, AND SO WE HAD
SOMETHING IN COMMON.
I WAS INTERESTED IN SOMEBODY
THAT WOULD HELP ME GUIDE THIS
LONG PATH THAT WE'VE BEEN ON TO
TAKING CARE OF MORE CHILDREN,
TAKING CARE OF CHILDREN THAT ARE
A LITTLE SMALLER AND A LITTLE
SICKER, AND DOING IMPORTANT
RESEARCH THAT INVOLVED THAT
PATIENT POPULATION, AND IT TOOK
ME ABOUT 15 MINUTES AFTER I
HEARD WHO SHE WAS AND WHERE SHE
CAME FROM TO FIGURE OUT THAT I
WANTED HER INVOLVED, AND SHE HAS
BEEN -- SHE'S BEEN THERE FOR
THAT SINCE.
AND THERE'S A LOT OF TODAY'S
MEETING THAT HAS TO DO WITH THIS
TOPIC.
I WANT TO CONGRATULATE VAN FOR
SUCCESSFUL COMPLETION OF HIS
CAREER AT HOLY CROSS, TRINITY
HEALTH, AND VERY HAPPY FOR YOU
ALL TO KNOW THAT HE'S NOT
RETIRING FROM THE CLINICAL
CENTER RESEARCH HOSPITAL BOARD,
AND HE'LL BE WITH US IN THAT
CAPACITY GOING FORWARD.
AT LEAST I THINK SO.
WE LIKE TO BRAG ABOUT OUR AWARD
RECIPIENTS AS WELL.
AGAIN, CLINICAL RECOGNITION WAS
NOT MUCH OF A FEATURE OF THE
CLINICAL CENTER WHEN I ARRIVED
SEVEN YEARS AGO.
IT TOOK US A COUPLE YEARS TO PUT
THESE RECOGNITION PROGRAMS IN
PLACE AND WE RECOGNIZE EVERY
YEAR ONE STAFF CLINICIAN AND
THEN USUALLY THE AWARD IS
SUPPOSED TO BE FOR ONE ADVANCED
PRACTICE PROVIDER, BUT IT ALWAYS
SEEMS LIKE THERE'S TWO THAT ARE
ALWAYS KIND OF NECK-AND-NECK.
SO THIS YEAR AS WE HAVE DONE AND
A NUMBER OF OTHER YEARS, WE GAVE
TWO AWARDS, ONE TO A PHYSICIAN
ASSISTANT.
THEY'RE BOTH NURSE
PRACTITIONERS, I BELIEVE, AND
BOTH THE WRITEUPS WERE JUST
EXTRAORDINARY.
USUALLY IT TAKES A COUPLE ROUNDS
OF VOTING FOR US TO NECK IT DOWN
TO SOMETHING WHERE THERE'S A
CLEAR WINNER OR A COUPLE
WINNERS, AND THEN ON THE
ADMINISTRATIVE SIDE, WE DID HAVE
A TIE THIS YEAR, AND YOU SEE
THAT MARCUS MEANS WORKS WITH OUR
HOSPITALITY AND VOLUNTEER
SERVICES GROUP AND IS VERY WELL
THOUGHT OF, AND DR. KATIE
STAGLIANO HAS BEEN THE DEPUTY IN
THE DEPARTMENT OF LABORATORY
MEDICINE AND HAS REALLY MADE A
DIFFERENCE IN TERMS OF THAT
DEPARTMENT.
AND SO WE WERE EXCITED TO HONOR
THEM.
WE HAD SOME -- WE HAD A NUMBER
OF DIRECTORS' AWARDS.
THIS IS THE NIH DIRECTOR, SO
THIS IS THE AWARD AT THE NIH
LEVEL WHO WERE HONORED, AND THEN
WE HAD A VERY NICE -- THIS IS
REALLY THE FIRST TIME SINCE THE
START OF COVID THAT WE WERE ABLE
TO HAVE OUR AWARD CEREMONY WHERE
WE COULD ACTUALLY GET TOGETHER
AND KIND OF ENJOY EACH OTHER,
AND SO THE AWARD CEREMONY ITSELF
WAS VIRTUAL BUT THEN WE HAD ONE
OF THE OPEN TERRACES, INDOOR
TERRACES AT THE CLINICAL CENTER
ALL SET UP FOR PEOPLE TO COME BY
AND PICK UP THEIR AWARDS AND SO
I GOT TO HAVE MY PICTURE TAKEN
WITH A BUNCH OF GREAT AMERICANS,
AND SOMETIMES THEY WEREN'T
AMERICANS.
SOMETIMES THEY COME FROM OTHER
PLACES, AND YOU CAN SEE THAT IT
WAS REALLY A GOOD DAY AND ONE OF
THE FIRST DAYS THAT WE COULD GET
TOGETHER.
A TRADITION OVER THE LAST 20 OR
25 YEARS IN THE CLINICAL CENTER
HAS BEEN THE GINGERBREAD HOUSE
CONTEST.
THIS IS THE FIRST YEAR SINCE THE
START OF THE PANDEMIC THAT THE
GINGERBREAD HOUSES WERE BACK,
AND THAT MADE A HUGE DIFFERENCE
TOO.
THIS IS THE FIRST YEAR THAT WE
ALLOWED VOCAL MUSIC IN THE
CLINICAL CENTER.
THERE'S A LONG-STANDING HISTORY
OF MUSICAL PERFORMANCES IN THE
ATRIUM OF THE CLINICAL CENTER.
ANY OF YOU THAT HAVE BEEN THERE
HAVE SEEN THAT BEAUTIFUL
STEINWAY PIANO.
DURING THE PANDEMIC ESPECIALLY
THE EARLY PART, THERE WAS A LOT
OF DISCUSSION THAT SINGING WAS A
WAY OF TRANSMITTING THE VIRUS,
AND SO WE CUT DOWN ON ALL THE
VOCAL MUSIC AND FOR A WHILE, WE
CUT DOWN ON WOOD WINDS AND BRASS
AND ALL WE HAD WAS PERCUSSION
INSTRUMENTS AND STRING STEUME
STEUMENTS.
WE FINALLY COULD HAVE ALL OF OUR
HOLIDAY MUSIC DURING THE MONTH
OF DECEMBER, AND IT WAS REALLY,
REALLY GOOD.
WE DID THAT WITHOUT HAVING ANY
SIGNIFICANT INCREASE IN COVID
POSITIVITY.
SO THIS WAS A VERY ENJOYABLE
HOLIDAY SEASON IN THE CLINICAL
CENTER IN COMPARISON TO THE MORE
RECENT ONES.
WE HAVE A COUPLE OF NEW KEY
STAFF MEMBERS ARRIVING THIS WEEK
FROM OREGON IS DR. SALY GABRIEL,
CHIEF OF THE PHARMACY
DEPARTMENT.
WE HAD INTERIM LEADERSHIP IN THE
PHARMACY DEPARTMENT FOR THE LAST
4 1/2 YEARS.
AND WE THINK WE'RE CLOSING IN ON
THE RENOVATION OF THE
CONSTRUCTION OF THE LAST PART OF
OUR NEW PHARMACY, AND SO WE
FINALLY DECIDED WE WERE IN A
POSITION TO GO OUT AND RECRUIT A
NEW CHIEF OF PHARMACY.
THAT'S A FAIRLY LONG PROCESS.
I WON'T GO INTO WHY IT'S A VERY
LONG PROCESS BUT YOU HAVE TO DO
IT TWICE IN ORDER TO BE ABLE TO
APPROXIMATE A MARKET RATE FOR
SALARY.
DR. HADIGAN LED THAT SEARCH.
SHE WAS THE SELECTING OFFICIAL
AND WE WERE VERY HAPPY WITH THE
ARRIVAL OF DR. GABRIEL, GIVEN
SOME HISTORY WITH THE PHARMACY,
AND I'VE SPENT ABOUT 2 1/2 HOURS
WITH DR. GABRIEL IN THE LAST TWO
OR THREE DAYS AND I THINK -- AND
SHE STILL COMES BACK, EVEN AFTER
I'VE TOLD HER ABOUT SOME OF THE
ISSUES.
THIS IS ABOUT TAKING CARE OF HER
STAFF IS REALLY, REALLY, REALLY
IMPORTANT AND SHE UNDERSTANDS
THAT AND AS A MATTER OF FACT SHE
PRIDES HERSELF ON THAT AND THAT
WILL BE REALLY IMPORTANT.
IT'S NOT OFFICIAL, HE DOESN'T
OFFICIALLY START AND GETTING
PAID IN THE NEW POSITION UNTIL
THE 25TH OF FEBRUARY, BUT ALL
THE PAPERWORK IS DONE AND ALL
THE APPROVAL IS OBTAINED AND DRE
CHIEF OF THE DEPARTMENT OF
TRANSFUSION MEDICINE AND THE
CENTER FOR CELLULAR ENGINEERING.
DAVID IS WELL-KNOWN TO US, HE'S
BEEN HERE FOR A LONG TIME.
HIS FORTE IS THE CELLULAR
ENGINEERING DEPARTMENT, BUT
DAVID KNOWS A LOT ABOUT
TRANSFUSION MEDICINE AND I THINK
THE DEPARTMENT IS IN GOOD HANDS
AND DAVID IS VERY EXCITED TO GET
STARTED BUT HE'S ALSO WILLING TO
CONTINUE TO LEARN ABOUT WHAT
BEING A DEPARTMENT CHIEF AND
SENIOR LEADER IS.
I THINK YOU HEARD FROM ANNE
BERGER THE LAST TIME, ANNE RAN
THE PAIN AND PALLIATIVE CARE
SERVICE AND RETIRED.
DR. JENNIFER CHENG HAS BEEN IN
CHARGE OF THE FELLOWSHIP AND IS
A DELIGHTFUL YOUNG PHYSICIAN.
THIS DOESN'T LOOK LIKE A BIG
DEAL BUT IT'S ACTUALLY A BIG
DEAL.
SO 2024 IS THE BLUE LINE.
THIS IS THE FIRST TIME OUR BLUE
LINE HAS BEEN ABOVE THAT YELLOW
LINE.
AND FOR FISCAL YEAR '24.
AND PARTICULARLY THAT INFLECTION
POINT WHERE IT LOOKS LIKE IT
BEGINS TO GO UP A LITTLE MORE
STEEPLY IS SOMETHING THAT WE'RE
PAYING A LOT OF ATTENTION TO.
SO OUR INPATIENT CENSUS IS
ACTUALLY UP A LITTLE BIT.
MAYBE NOT AS MUCH AS WE WANT
YET, BUT I THINK WE SEE SOME
INDICATION THAT ALL OF THE
THINGS ASSOCIATED WITH COVID-19
ARE KIND OF -- I HATE TO -- I'LL
KNOCK ON WOOD AND SAY I DON'T
THINK THAT IT'S ALL OVER YET,
BUT IT LOOKS LIKE WE'RE DOING
BETTER.
THESE ARE THE NUMBERS.
SO 9% INCREASE IN INPATIENT
ADMISSIONS, OUR LENGTH OF STAY
IS STILL DOWN, WHICH IS OKAY.
THAT MEANS WE'RE GETTING THINGS
DONE MORE EFFICIENTLY.
INPATIENT DAYS NOT UP AS MUCH
BECAUSE OF DECLINE IN AVERAGE
LENGTH OF STAY, AND OUR AVERAGE
CENSUS IS UP A LITTLE BIT.
THE OUTPATIENT VISITS NOT QUITE
SO MUCH.
WE ALWAYS KEEP AN EYE ON THAT
NEW PATIENT NUMBER AND WE'LL
WATCH THAT DURING THE COURSE OF
THE YEAR BUT IT'S DROPPED JUST A
LITTLE BIT.
IN COMPARISON -- AND IF WE WERE
TO LOOK AT THIS SLIDE FROM 2023,
YOU WOULD SEE THAT OUR
OUTPATIENT VISITS MOVED UP ABOUT
10 TO 15% IN 2023 OVER 2022.
SO THE INCREASE IN THE
OUTPATIENT VISITS LED THE
INCREASE IN THE INPATIENT
CENSUS.
TEASE ARE OUR TELEHEALTH VISITS.
AGAIN WE CONTINUE TO RELY ON
THAT BASED ON SOME CONVERSATIONS
I'VE HAD WITH DR. RATHMELL, WE
MIGHT BE RELYING ON THAT EVEN A
LITTLE MORE AS TIME GOES ALONG
IN ORDER TO OPERATE A LITTLE
MORE EFFICIENTLY.
SO WE'LL BE WORKING ON THAT AS
TIME GOES ALONG.
DR. JORDAN DOESN'T HAVE A
PRESENTATION THIS CLINICAL
CENTER RESEARCH HOSPITAL BOARD
MEETING BECAUSE THE CLINICAL
CENTER NURSING DEPARTMENT IS
BUSILY AND FEE FEARISHLY
PREPARING THE -- FEVERISHLY
PREPARING THE DOCUMENTS FOR OUR
MAGNET SUBMISSION WHICH IS IN
APRIL.
SO YOU CAN SEE WHERE WE ARE ON
THIS TIMELINE.
WE'RE EXPECTING THE MAGNET VISIT
LATER THIS SUMMER OR EARLY IN
THE FALL.
IF OUR LUCK HOLDS OUT, THE
MAGNET FOLKS AND THE JOINT
COMMISSION MIGHT AROUND AROUND
THE SAME TIME.
THAT WOULD BE KIND OF
INTERESTING.
BUT YOU KNOW, WE'RE THE NIH
CLINICAL CENTER AND WE'RE UP FOR
JUST ABOUT ANYTHING.
AND SO I'VE SEEN SOME OF THE
DOCUMENTS.
THIS IS A VERY EXTENSIVE
DOCUMENT SUBMISSION IN ORDER TO
MEET ALL OF THE REQUIREMENTS FOR
MAGNET, AND THE SEGMENTS I'VE
SEEN THUS FAR HAVE BEEN WRITTEN
IN REALLY, REALLY AMAZING WAY,
AND I THINK WE'RE GOING TO GET
ACROSS THE FINISH LINE.
THIS HAS BEEN A VERY LONG
JOURNEY.
I THINK IT'S LONGER THAN IT WAS
WHEN WE THOUGHT -- WHEN WE
BEGAN, BUT IT'S VERY IMPORTANT
TO OUR NURSING DEPARTMENT.
AND I IT'S VERY IMPORTANT TO THE
CLINICAL CENTER THAT WE'RE
SUCCESSFUL IN THIS EFFORT.
THE COURSE MAY HAVE SLOWED DOWN
A LITTLE BIT DURING THE PANDEMIC
BUT WE DID NOT REALLY DEVIATE
FROM THIS GOAL DURING THE
PANDEMIC, I THINK IS A CREDIT TO
THE CLINICAL CENTER NURSING
DEPARTMENT.
WE HAVE A VERY ACTIVE --
DR. TABAK TALKED ABOUT THE
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY, AND I WANT TO
REMIND EVERYBODY THAT WHILE
EVERYBODY ELSE SUBMITTED A PLAN
THEY CALLED A RACIAL AND ETHNIC
EQUITY PLAN, WE ALWAYS CALLED
OUR PLAN A DEIA PLAN.
WE INCLUDED ACCESSIBILITY BEFORE
WE SUBMITTED THE PLAN.
AND CC HENRY, WHO IS OUR
SCIENTIFIC DIVERSITY ADVISER, IS
VERY ACTIVE AND DOING A GREAT
JOB OF CONNECTING US WITH THE
NIH PROGRAMS, WITH THE NIH
INSTITUTIONAL EFFORTS TO IMPROVE
OUR DIVERSITY, EQUITY AND
INCLUSION PROGRAMS, AND SERVES
AS AN ADVISOR WITH DIRECT ACCESS
TO ALL THE LEADERS IN THE
CLINICAL CENTER, AND WE HAVE A
NUMBER OF PROGRAMS AND I THINK
WE'RE MAKING SOME PROGRESS.
WE ACTUALLY WENT OVER OUR
LATEST -- OUR SELF-GRADED RACIAL
AND ETHNIC EQUITY PLAN PROCESS
OR OUR DEIA PLAN PROCESS WITH
THE OFFICE OF EQUITY, DIVERSITY,
INCLUSION AND ACCESSIBILITY THIS
WEEK, AND GENERALLY THEY WERE
HAPPY WITH THE PROGRESS WE'VE
MADE BUT WE HAVE LOTS MORE WORK
TO DO.
ONE OF THE PRIORITIES, I TALKED
ABOUT THIS IN A PREVIOUS
CLINICAL CENTER RESEARCH
HOSPITAL BOARD MEETING, IS TO
IMPROVE THE WAY WE COLLECT,
STORE, HANDLE INFORMATION TO
MAKE IT MORE USABLE.
EASIER TO FIND WHAT YOU WANT,
BOTH FOR THE STAFF AND PATIENTS.
AND WE HAD TO GO BACK AND START
AT THE GROUND LEVEL AND
BASICALLY REDESIGN OUR WEBSITE.
AND THAT IS UNDERWAY NOW.
THE NEXT COUPLE OF SLIDES SORT
OF DESCRIBE WHERE WE ARE WITH
THAT.
IT'S PRETTY CLEAR FROM THE
NUMBER OF HIT THAT WE HAVE ON
THE WEBPAGE THAT PEOPLE ARE
GOING THERE TO LOOK.
WE'RE NOT SURE THEY'RE ABLE
TO -- WE CAN'T TELL WHETHER THEY
CAN FIND WHAT THEY'RE LOOKING
FOR OR NOT.
SO WE HAVE TO MAKE SURE THAT
IT'S MORE INTUITIVE AND THAT THE
SEARCH FUNCTION IS APPROVED, AND
THAT THE INFORMATION IS KEPT UP
TO DATE.
AND THIS IS KIND OF WHERE WE ARE
IN THE PROCESS AND THERE'S
OBVIOUSLY SOME OUTSIDE HELP
ASSOCIATED WITH THIS.
WE TOOK A LITTLE BIT OF OUR
HIGHER LAG MONEY FROM FY 23 AND
FUNDED THIS CONTRACT AND WE'RE
LOOKING FORWARD TO SEEING SOME
OF THE RESULTS OF THAT AS TIME
GOES ALONG, AND RIGHT NOW WE'RE
WORKING WITH BTRIS, OUR BIG
RESEARCH DATA REPOSITORY THAT
EXISTS -- IT CONNECTS WITH OUR
ELECTRONIC HEALTH RECORD, BUT IT
IS NOT -- YOU ACCESS THE DATA
SEPARATELY FROM ACCESSING THE
ELECTRONIC HEALTH RECORD, OR
ELSE OUR ELECTRONIC HEALTH
RECORD WOULD BECOME REALLY,
REALLY SLOW.
AND SO BEING ABLE TO GET FROM
OUR WEBSITE IN TO THE BTRIS
DATABASE AND MAP TO THE
INFORMATION THAT YOU'RE LOOKING
FOR IS ONE OF THE THINGS THEY'RE
WORKING ON RIGHT NOW.
DAVID'S QUESTION IS, IS JUSTIN
COHEN THE CHIEF OF THE OFFICE OF
COMMUNICATIONS AND MEDIA
RELATIONS, THE PERSON WHO'S --
THEY'RE THE ONES WHO ARE
DIRECTING THE WEBSITE CHANGE.
WELL, WE DON'T HAVE ANY
WATERFRONT PROPERTY ANYMORE AT
THE SURGERY, RADIOLOGY AND
LABORATORY MEDICINE WING.
WE DID HAVE A LITTLE SNOW A FEW
WEEKS AGO AND I WENT OVER AND
TOOK THIS PICTURE AND SO KIND OF
WONDERED AFTER WE LOOKED AT IT
ABOUT, YOU KNOW, ABOUT MAYBE A
SKI RESORT, BUT WE'RE
PROBABLY -- THE SNOW MELTED
PRETTY FAST AND WE'RE BACK TO
CONSTRUCTION.
WE'RE SORT OF -- WE'VE GOTTEN
THROUGH SOME OF THE INITIAL
STEPS AND I THINK THERE WAS A
DELAY, THEY FOUND SOME ASBESTOS
IN A CONDUIT THAT WAS ABOUT
WHERE YOU SEE THAT CRANE SITTING
NOW, AND IT SLOWED THINGS DOWN A
LITTLE BIT AS THEY HAD TO DO ALL
THE MITIGATION AND TESTING AND
EVERYTHING ASSOCIATED WITH THAT.
BUT I THINK THEY'RE PRETTY --
ACTUALLY PRETTY CLOSE TO
SCHEDULE NOW.
THE FEDERAL EMPLOYEE VIEWPOINT
SURVEY IS THE FEDERAL
GOVERNMENT'S ANNUAL ASSESSMENT
OF THE WORKFORCE.
IT'S QUITE A BIG DEAL.
IT'S BECOME A BIGGER DEAL AS
TIME HAS GONE ALONG.
AND I THINK I WENT OVER THE
RESULTS OF LAST YEAR'S SURVEY IN
THE CLINICAL CENTER RESEARCH
HOSPITAL BOARD SO I'M GOING TO
SHOW YOU A FEW SLIDES ABOUT HOW
WE DID THIS YEAR.
SO AGAIN, FOR ANYBODY THAT'S NOT
AWARE, IT'S AN ANNUAL EMPLOYEE
SURVEY FROM OPM, AND IT MEASURES
OUR STAFF MEMBERS' PERCEPTIONS
ABOUT WORK EXPERIENCES,
ORGANIZATIONS AND LEADERS.
AND CONTRACTORS DON'T GET A
CHANCE TO TAKE IT AND YOU HAVE
TO BE HERE A LITTLE WHILE BEFORE
YOU'RE INCLUDED IN THE SURVEY.
AND LAST YEAR, YOU CAN SEE THE
TIME THE SURVEY WAS AVAILABLE.
THEY CHANGE IT JUST A LITTLE
BIT, MOST OF IT'S THE SAME BUT
THEY CHANGED IT JUST A LITTLE
BIT THIS YEAR.
AND THIS IS OUR PARTICIPATION
RATE.
AND FRANKLY, THE PARTICIPATION
RATE IS ONE OF THE MOST
IMPORTANT METRICS THAT I LOOK AT
IN ORDER TO TRY TO MAKE SURE
THAT WE'RE GETTING USEFUL
INFORMATION FROM THE SURVEY.
WE ACTUALLY BROKE THE RECORD, WE
ACTUALLY WERE AT 65.4%, WHEREAS
THE PAST RECORD WAS 65%.
BY THE WAY, MY ARRIVAL WAS IN
2017, SO THAT 2016 TO 2017 WHERE
THE SLOPE OF THE LINE IS A
LITTLE STEEPER IS WHEN THINGS
SORT OF CHANGED AT THE CLINICAL
CENTER AFTER THE FDA VISIT AND
THE RED TEAM REPORT.
SO THIS IS OUR RESPONSE RATE.
WE WERE AT 65.4%, BUT NOT ENOUGH
OF A CHANGE TO REGISTER.
THIS SLIDE ACTUALLY COMES FROM
NIH OFFICE OF HUMAN RESOURCES.
THESE ARE THE OPM AND
HHS-MEASURED INDICES THAT WE
LOOKED AT.
THIS IS PRETTY FAMILIAR, THIS IS
PRETTY CONSISTENT WITH WHAT WE
DO EVERY YEAR.
WE'RE NEVER QUITE AS GOOD AS THE
NIH AT LARGE, BUT YOU CAN SEE
THE DIFFERENCE WITH 2022,
THERE'S BASICALLY NO DIFFERENCE.
SOME THINGS GO UP BY A
PERCENTAGE, SOME THINGS GO DOWN
BY A PERCENTAGE.
SOME OF THE THINGS DON'T CHANGE.
SO THIS IS SORT OF A NEUTRAL
FEVS THIS YEAR.
NOT SURE HOW WE'RE GOING TO GET
THINGS MOVING AGAIN.
YOU'LL SEE SOME MORE INFORMATION
HERE.
SO THESE ARE SOME OF THE OTHER
INDICES THAT ARE MEASURED.
YOU CAN SEE THAT A COUPLE OF
THEM DIDN'T CHANGE, A COUPLE OF
THEM WENT UP BY A COUPLE
PERCENTAGE POINTS, AND THE
ACCESSIBILITY WENT DOWN BY
1 PERCENTAGE POINT.
BELIEF IN ACTION INDICATOR,
REMEMBER, THERE'S NO -- THESE
ARE EXPANDED SCALE SO DIFFER
DIFFERENCES LOOK BIGGER THAN
THEY REALLY ARE, SO OUR BELIEF
IN ACTION INDICATOR IS PRETTY
STABLE OVER THE COURSE OF THE
PANDEMIC.
THE EMPLOYMENT ENGAGEMENT INDEX
LOOKS LIKE IT WENT DOWN A LOT
BETWEEN 2020 TO 2022, BUT THAT'S
REALLY 2 PERCENTAGE POINTS.
THE GLOBAL SATISFACTION INDEX
WENT DOWN FROM 2000 TO 2022.
MUCH OF THIS -- ONE OF THE BIG
CONTRIBUTORS IS THAT MORE OF THE
STAFF IN THE CLINICAL CENTER
THIS YEAR FEEL LIKE THEIR
COMPENSATION ISN'T AS HIGH AS IT
SHOULD BE.
WE DID HAVE A DROPOFF THERE.
PERFORMANCE CONFIDENCE, IT LOOKS
PRETTY GOOD.
WE HAD NO CHANGE IN OUR DEIA
INDEX.
WE WOULD REALLY LIKE TO SEE THAT
MOVE UP A LITTLE BIT.
SO HERE ARE THE QUICK STATS.
THE WAY THIS IS LOOKED AT BY O
OPM.
75 OUT OF 89 INDICATORS WERE
CONSIDERED STRENGTHS, AND THAT'S
ABOUT THE SAME AS IT WAS IN
2022.
WE DID NOT HAVE A LESS THAN 40%
POSITIVE RATING.
I THINK THAT ADEQUACY OF
COMPENSATION WAS PROBABLY 48%.
THAT'S ABOUT AS LOW AS IT GETS.
AND WE HAD ONE CHALLENGE AREA
LAST YEAR BUT NONE THIS YEAR.
FOR TOES THOSE OF YOU THAT KNOT
ABOUT THESE SURVEYS, IT'S THE
NEUTRAL RATINGS THAT ARE
IDENTIFIED AS OPPORTUNITIES, YOU
CAN MOVE THEM ONE WAY OR THE
OTHER.
IF YOU HAVE MORE THAN 30% OF
YOUR STAFF THAT ARE SOMEPLACE IN
THE MIDDLE THERE, THEN THAT'S
CONSIDERED AN OPPORTUNITY.
WE HAD NONE THERE, SO IT SAYS
OUR OPPORTUNITIES MIGHT BE
LIMITED.
WE HAD NO OPPORTUNITIES -- WE
HAD NO EFFORTS/INDICATIONS THAT
THINGS IMPROVED OR DECLINED.
THESE ARE THE TOP FIVE
STRENGTHS, AND I THINK THESE ARE
ALL GOOD THINGS ON THE PART OF
THE CLINICAL CENTER STAFF.
THESE ARE THE OPPORTUNITIES
AGAIN, WE HAD NONE THAT MET THE
OFFICIAL DEFINITION, BUT YOU CAN
SEE THE ONES WHERE WE HAVE THE
GREATEST OPPORTUNITY TO IMPROVE,
AND MAYBE BE ABLE TO MAKE A
DIFFERENCE.
WE HAD NO CHALLENGE AREAS BUT
THIS IS -- WHICH IS LESS THAN
40%, BUT HOW SATISFIED ARE YOU
WITH YOUR PAY AT 48.5% WAS
ACTUALLY THE ONLY ITEM BELOW
50%.
WE HAD A NUMBER OF AREAS THAT
DECLINED.
ALL DECLINED IN A RELATIVELY
SMALL WAY.
AND I THINK THAT'S PROBABLY IT
FOR THE FEVS SURVEY.
WE DO EXPECT THE JOINT
COMMISSION LATER ON THIS YEAR,
AND DR. LANGE AND HIS STAFF HAVE
PREPARED THE JOINT COMMISSION
READINESS GUIDE, THAT'S
AVAILABLE.
WE WILL HAVE SOME OTHER JOINT
COMMISSION RELATED EVENTS COMING
UP.
WE'RE ACTUALLY ON OUR -- FROM MY
EMAIL ACCOUNT, THE CEO'S EMAIL
ACCOUNT, WE'VE GONE THROUGH A
SERIES OF REVIEW OF THE TENETS
OF HIGH RELIABILITY IN THE
DELIVERY OF HEALTHCARE THAT
ARE -- THAT OUR SURVEY OF
PATIENT SAFETY INDICATED IT
MIGHT BE TIME TO REVIEW THOSE,
SO WE'VE BEEN DOING THAT OVER
THE COURSE OF THE LAST WEEK.
WE HAVE DONE -- WE DID COMPLETE
THE SURVEY OF PATIENT SAFETY.
I WILL SAY THAT THE RESPONSE
THIS YEAR, THERE WERE LESS THAN
600 OUT OF 5,000 PEOPLE WHO GOT
THE SURVEY WHO ACTUALLY
COMPLETED IT.
I DO BELIEVE THAT THERE'S A
LITTLE BIT OF SURVEY FATIGUE
AROUND THE NIH RIGHT NOW, AND I
WAS A LITTLE DISAPPOINTED THAT
WE COULDN'T GET -- BECAUSE WE'VE
DONE -- WE DID THE SURVEY IN
2017, WE DID IT IN 2020.
FOLLOWING OVERTIME IS REALLY
KIND OF IMPORTANT.
WE MADE SIGNIFICANT IMPROVEMENTS
BETWEEN 2017 AND 2020, BUT WHAT
YOU WILL SEE IS THAT WE ARE --
WE BASICALLY TRACK ALONG WITH
AGE THE AHRQ APPEARS THAT ALSO
PARTICIPATE IN THIS SURVEY.
THE SURVEY IS SENT TO EVERYBODY
THAT WORKS IN BUILDING 10, NOT
JUST THOSE WHO BELONG TO THE
CLINICAL CENTER, AND SO YOU CAN
SEE THAT, AGAIN, WE LOOK A LOT
LIKE AHRQ.
SO IF YOU LOOK AT THE BLUE AND
THE ORANGE AND YOU LOOK AT THE
AHRQ ON THE RIGHT AND OURS ON
THE LEFT, YOU CAN SEE THAT IN
AHRQ, THAT THERE WERE A FEW MORE
EXCELLENTS AND NOT AS MANY VERY
GOODS.
SO THAT'S REALLY ABOUT THE ONLY
DIFFERENCE HERE.
AND THEN IF YOU LOOK AT THE
NUMERICAL SCORES IN THE 10
DIFFERENT DOMAINS, YOU CAN SEE
THAT THERE ARE A COUPLE OF
PLACES WHERE WE DO A LITTLE LESS
WELL THAN THE AHRQ FOLKS.
DOWN AT THE BOTTOM, THE HANDOFFS
AND INFORMATION CHANGE IS ONE OF
THOSE AREAS.
AND THEN YOU LOOK, YOU CAN SEE A
COUPLE OF AREAS WHERE WE DO A
LITTLE BIT BETTER.
WE DO BETTER FOR STAFFING AND
WORKPLACE ENVIRONMENT, AND WE DO
A LITTLE BETTER ON SUPERVISOR,
MANAGER OR CLINICAL LEADER
SHOULD PORT FOR PATIENT SAFETY.
SUPPORT FOR PATIENT SAFETY THAN
THE AHRQ NUMBERS.
EVERYTHING ELSE IS AWFULLY CLOSE
TO THE STATE YOUR NAME.
SAME.
SO WE HAVE -- WE'RE NOT
SATISFIED WITH LOOKING A LOT
LIKE THE REST OF AHRQ, IN PART
BECAUSE OUR RESEARCH PATIENT
POPULATION, WE CAN PLAN
EVERYTHING.
WE'RE NOT SUBJECT TO PEOPLE
COMING IN THROUGH OUR EMERGENCY
ROOM THAT WE HAVE NO IDEA WHAT'S
THE MATTER WITH.
WE KNOW WHAT'S THE MATTER WITH
THEM BEFORE THEY CAME.
WE SHOULD BE ABLE TO BE THE
AHRQ -- BEAT THE AHRQ NUMBERS
AND WE'LL KEEP PUSHING ON THAT.
WE SPEND A LOT OF TIME ON STAFF
WELLNESS, AND WE HAD A VERY
SPECIAL TOWN HALL MEETING BY OUR
CLINICAL CENTER WELLNESS GROUP,
MANAGING DEPRESSION, ANXIETY AND
SUICIDE PREVENTION.
MOST OF THESE POINT HERE ARE
WELL-KNOWN TO ALL OF YOU, AND TO
REMIND EVERYONE ABOUT THE
RESOURCES THAT ARE AVAILABLE AND
THIS WAS -- THIS WAS A VERY -- I
WAS A LITTLE SURPRISED, I WAS
VERY SUPPORTIVE OF THIS EVENT,
BUT PEOPLE WHO USUALLY DON'T
TALK TO ME IN THE HALLWAY OF THE
CLINICAL CENTER CAME UP TO ME
AND STOPPED ME IN THE HALLWAY
AND TOLD ME THAT THEY WERE --
THAT THEY'D NEVER BEEN IN AN
ORGANIZATION WHERE THEY WOULD
TALK OPENLY ABOUT THINGS LIKE
SUICIDE THE WAY WE HAD DONE IT.
AND I DIDN'T REALLY UNDERSTAND
THAT IT WAS GOING TO HAVE THAT
KIND OF AN IMPACT, BUT I'M
REALLY GLAD IT DID.
WE ACTUALLY HAVE A FOLLOW-UP
PLAN.
ONE OF THE THINGS THAT IS THE
MOST IMPACTFUL TO ME AS A
PHYSICIAN IS WHEN PATIENTS WHO
HAVE SUFFERED WITH A DISEASE OR
MALADY DESCRIBE THE EXPERIENCE
OF THE DISEASE OR THE MALADY,
AND ONE OF THE ISSUES WITH
SUICIDE IS, YOU DON'T GET A
CHANCE TO TALK TO THOSE PEOPLE.
BUT WE HAVE PEOPLE WHO HAVE COME
VERY CLOSE, WE HAVE FAMILY
MEMBERS OF THOSE WHO DIED BY
SUICIDE, AND THAT'S THE NEXT
PROGRAM, IS ACTUALLY TO BRING A
SMALL GROUP OF INDIVIDUALS IN
WHO HAD NEAR MISSES OR HAD
FAMILY MEMBERS AND ACTUALLY HAVE
AN OPEN CONVERSATION AND
DIALOGUE.
IT'S NOT ON THE BOOKS YET BUT IT
SHOULD BE THERE.
THERE'S ANOTHER SLIDE ON OUR
JOINT COMMISSION SURVEY, AND
THESE ARE THE DATA FROM THE
SURVEY OF PATIENT SAFETY.
THIS IS WHAT WE EXPECT TO BE
DOING IN 2024.
WE STILL HAVE A FEW KEY
POSITIONS TO FILL.
WE'LL CONTINUE TO FOCUS THAT
WE'VE BEEN ON FOR A WHILE ON
DEIA.
WE'RE GOING TO SUCCESSFULLY
FINISH THE MAGNET JOURNEY AND
WE'RE GOING TO CONTINUE TO WORK
ON TAKING GOOD CARE OF CHILDREN
AND HOPEFULLY CARE FOR MORE
CHILDREN.
WE HAVE STAFF WELL-BEING AND
WE'VE TALKED IN THIS FORUM A
COUPLE TIMES ABOUT THE FUTURE OF
WORK AND THAT WILL CONTINUE TO
BE A FOCUS AREA.
THE BOARD MEMBERS ALL RECEIVED
THE QUARTERLY PATIENT SAFETY
METRICS FROM DR. LANGE AND IF
YOU HAVE ANY QUESTIONS ABOUT
THOSE, YOU CAN SEE DR. LANG
DURING THE BREAK OR SEND US AN
EMAIL, WE'LL BE HAPPY TO RESPOND
TO THOSE.
THIS IS TODAY'S AGENDA.
AND YOU'VE ALREADY HEARD FROM
DR. TABAK.
THIS WILL COMPLETE MY UPDATE DR.
WE'RE VERY GLAD THAT SHE WAS
HERE BECAUSE SHE'S BEEN
PERFORMING THE CIVIC DUTY FOR
ALL OF US BY BEING ON A JURY
THIS WEEK AND THE TRIAL IS
FINALLY OVER, AND SHE'S GOING TO
TALK TO US ABOUT HEALTH
DISPARITIES DATA AS YOU ALL ARE
PROBABLY AWARE, THE JOINT
COMMISSION AND THE ACCREDITATION
COUNCIL FOR GRADUATE MEDICAL
EDUCATION ARE FOCUSED ON THAT.
IT'S A LITTLE CHALLENGING IN OUR
ENVIRONMENT TO COME UP WITH
MEANINGFUL DATA BECAUSE WE DON'T
TAKE CARE OF -- WE DON'T HAVE
COVERED LIVES, WE DON'T HAVE
POPULATIONS, AND WE DON'T TAKE
CARE OF COMMON DISEASES, SO
ACTUALLY HEALTH DISPARITIES DATA
IS A LITTLE BIT HARDER TO
DEVELOP, BUT COLLEEN HAS BEEN
WORKING ON THIS FOR QUITE A
WHILE WITH A NUMBER OF PEOPLE,
AND SHE'S GOING TO SHOW YOU WHAT
WE HAVE.
THEN WE HAVE A COUPLE OF
PRESENTATIONS THAT, AGAIN,
RELATE TO OUR ABILITY TO TAKE
GOOD CARE OF CHILDREN.
YOU'RE GOING TO HEAR FROM
DR. BIANCHI, THE DIRECTOR OF THE
NATIONAL INSTITUTE -- ACTUALLY
IT'S THE EUNICE KENNEDY SHRIVER
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT.
SHE WOULD WANT US TO USE THE
ENTIRE NAME.
AND DR. BRIGITTE WIDEMANN, CHIEF
OF THE PEDIATRIC ONCOLOGY BRANCH
FOR CHILDHOOD CANCER ARE GOING
TO TALK ABOUT THEIR WORKING
GROUP LOOKING AT THE STRATEGIC
LANDSCAPE FOR DOING RESEARCH IN
CHILDREN.
AND THEN AFTER THE BREAK YOU'RE
GOING TO GET A GREAT
PRESENTATION FROM JENNIE LUCCA
ABOUT THE CHILDREN'S INN.
I DON'T BELIEVE THIS GROUP HAS
HAD A PRESENTATION IN ITS
ENTIRETY OF ITS EXISTENCE ABOUT
THE CHILDREN'S INN.
YOU ARE GOING TO LIKE THAT
PRESENTATION.
YOU'LL GET A SECOND DOSE OF
DR. WIDEMANN IN THAT
PRESENTATION AS THE PATIENT WHO
IS FEATURED IN THAT PRESENTATION
IS ONE OF HERS.
AND THEN WE'LL HAVE THE ANNUAL
FACILITIES UPDATE.
THIS GROUP GETS UPDATED EVERY
YEAR ABOUT OUR CURRENT
FACILITIES PROJECTS BY DAN
WHEELAND.
SO THANK YOU ALL FOR BEING HERE.
THANK YOU ALL WHO ARE ON THE
VIRTUAL ROOM, AND DAVID HAS GOT
A QUESTION, AND THEN REGINA
DOES.
>> I JUST SAW -- NOTED WHAT TO
EXPECT IN 2024 DIDN'T HAVE
ANYTHING ABOUT THE EHR PROJECT.
>> THE EHR PROJECT.
WELL, THERE IS A LOT GOING ON
WITH THE EHR PROJECT.
WE ACTUALLY HAD A MEETING THIS
WEEK, BUT IT'S ALL GROUNDWORK.
IT'S NOT FUNDED.
AND SO IT ALL GROUNDWORK TRYING
TO MAP A NUMBER OF CLINICAL
WORKFLOWS THAT WILL HELP INFORM
THE GROUP THAT WILL BE
RESPONSIBLE FOR PRODUCING THE
EHR.
>> DO THOSE WORK FLOWS HELP THE
MAGNET PROJECT?
>> THEY DON'T, BECAUSE THE
MAGNET PAPERWORK HAS TO BE IN IN
APRIL, SO THE WORKFLOWS WON'T --
IT'S JUST -- IT'S A HEAD SPACE
AND TIMING ISSUE.
USE YOUR MICROPHONE, HIT THE
"ON" BUTTON.
>> THANKS, DR. GILMAN.
JUST A QUICK QUESTION ABOUT THE
EMPLOYEE SURVEY THAT YOU
MENTIONED.
I THINK I HEARD YOU SAY THAT
CONTRACTED STAFF WERE NOT
INCLUDED IN THAT SURVEY.
MY QUESTION WAS ABOUT WHAT
PERCENT OF THE STAFF WERE
CONTRACTED?
I WAS JUST CURIOUS IF YOU COULD
SPEAK TO THAT.
>> I'LL TRY TO GET THAT NUMBER
FOR YOU.
I WOULD -- BALLPARK FIGURE WOULD
BE PROBABLY 15 TO 20%.
IT GETS COMPLICATED WHEN YOU
TALK ABOUT THE HEAD COUNT OR THE
NUMBER OF FTEs.
THERE ARE SOME AREAS THAT ARE
HEAVILY CONTRACTED BECAUSE YOU
CAN'T POSSIBLY PAY ON A GS SCALE
WHAT THE MARKET IS, AND THERE
ARE OTHERS THAT ARE ALMOST
ENTIRELY -- AND THEN THERE ARE
SOME -- THERE ARE SOME
AUTHORITIES THAT ONLY A FEDERAL
GOVERNMENT EMPLOYEE CAN HAVE.
SO THOSE ARE ALL FEDERAL
POSITIONS.
STEPHANIE?
>> THANKS, DR. GILMAN.
IF SHOULD KNOW THIS.
DID THE JOINT COMMISSION SKIP A
YEAR BECAUSE OF THE PANDEMIC?
>> NO, THEY WERE HERE IN 2020.
AND WE HAD SIGNIFICANT ISSUES --
NO, 2021.
THEY WERE HERE IN 2021.
THEY CAME IN AUGUST OF 2021.
IF YOU'LL RECALL, WE HAD ISSUES
WITH OUR STERILE PROCESSING, AND
WE'VE DONE A LOT OF WORK THERE.
WE'RE ACTUALLY IN THE NEW
B1 STERILE PROCESSING, AND SO
WE'RE HOPEFUL BUT WE KNOW
THEY'RE GOING TO LOOK REALLY,
REALLY HARD AT IT, AND SO WE'LL
SEE.
DAVID?
>> DR. GILMAN, TERRIFIC UPDATE.
THE PRESENTATION AROUND THE
SUICIDE PREV PREVENTION CAUGHT Y
EYE.
IT TERRIFIC YOU'RE TAKING THE
LEAD HERE.
I WAS CURIOUS, THOUGH, THAT
FIRST HEADLINE SAID SUICIDE
GRATES ARE UP.
I KNOW IT'S UP IN A SECULAR WAY.
IS IT ALSO UP AT THE NIH?
>> I DON'T KNOW THAT THE NIH HAS
FIGURES ON THAT.
IN THE MILITARY, WE WOULD KNOW,
BECAUSE WE WOULD KNOW WHO WAS IN
THE SERVICE AND WHO WASN'T.
I WILL TELL YOU THAT IN THE LAST
TWO YEARS, AND AGAIN, IT ALWAYS
SMALL NUMBERS.
I MEAN -- BUT YOU KNOW THAT
THAT'S KIND OF THE TIP OF THE
ICEBERG.
BUT WE STARTED THAT PRESENTATION
BY -- I INTRODUCED THE
PRESENTATION BY SAYING THE NAMES
OF FOUR PEOPLE AT THE CLINICAL
CENTER WHO HAD DIED BY SUICIDE
IN THE LAST TWO YEARS.
OKAY?
AND AGAIN, WHEN IT COMES TO
STAFF WELL-BEING AND MORALE AND
RETENTION AND ALL THE THINGS,
YOU KNOW, THAT'S THE TIP OF THE
TIP OF THE ICEBERG.
ONE OF THE THINGS PEOPLE TALK TO
ME ABOUT, THEY SAID, "YOU SAID
THE NAMES."
AND THE PEOPLE WHO KNEW THEM
REALLY, REALLY APPRECIATED THAT.
AND -- YEAH.
AND IT'S SOMETHING WE HAVE TO
TALK ABOUT.
WE CAN'T JUST HAVE CONFERENCES
ABOUT IT AND TALK ABOUT IT IN
A -- YOU KNOW, IN AN AGGREGATE
WAY.
WE HAVE TO TALK ABOUT THE PEOPLE
THAT WE MISS.
SO -- YEAH.
>> KUDOS.
>> YEAH.
>> DR. GILMAN ON THE SAME TOPIC.
IT SOUNDS LIKE IT WAS EXTREMELY
POWERFUL.
IN THE PAST, PAT HAS SENT US
REPORTINGS OF SOME OF THE
SPECIAL PROGRAMS YOU HAVE DONE.
DO WE HAVE ACCESS TO LOOK AT IT?
>> I BELIEVE THAT ONE IS
RECORDED AND I BELIEVE YOU CAN
HAVE ACCESS TO THAT ONE.
I WILL DOUBLE-CHECK.
OKAY?
>> THANK YOU, DR. GILMAN.
>> TONY?
TONI?
>> THEY'VE ALREADY COVERED MY
QUESTION REGARDING HOW MANY HAVE
THE SUICIDES HERE AT NIH GONE UP
SO I WILL GO ON TO MY NEXT
QUESTION.
IN REFERENCE TO THE SURVEYS, HOW
WERE THEY SENT OUT?
WERE THEY SENT TO FOLKS BY
EMAIL, PAPER SURVEYS?
>> IT WAS EMAIL.
IT WAS SENT OUT OVER EMAIL.
IT'S A VIRTUAL SURVEY.
>> AND HOW MANY PEOPLE WAS IT
SENT TO, DO YOU THINK?
>> SO I'M NOT SURE WHICH SURVEY
YOU'RE TALKING ABOUT.
IF YOU'RE TALKING ABOUT THE
FEDERAL EMPLOYEE VIEWPOINT
SURVEY, THAT GOES TO ALL FEDERAL
EMPLOYEES THAT HAVE BEEN HERE,
USUALLY IT STARTS WITH THE
FISCAL -- START OF THE FISCAL
YEAR.
IT GOES -- SO IN THE CLINICAL
CENTER, THAT WOULD BE ABOUT 16-
OR 1700 PEOPLE.
IF YOU'RE TALKING ABOUT THE
SURVEY OF PATIENT SAFETY WHERE
WE ONLY GOT ABOUT 600 RETURNED,
THAT WENT TO LIKE 5,000 PEOPLE.
YEAH.
THAT'S THE ONE.
AND IT GOES TO EVERYBODY THAT
SORT OF HAS ANY CLINICAL
RESPONSIBILITIES.
AND AGAIN, THERE IS UNDOUBTEDLY
AN ELEMENT OF SURVEY FATIGUE AT
THE NIH.
IT'S DURING THE PANDEMIC, PARTLY
DUE TO THE PANDEMIC AND PARTLY
DUE THAT WE LOVE DATA, WE REALLY
LIKE TO DO SURVEYS, AND SURVEYS
ARE HOW YOU CAN GET SIGNIFICANT
NUMBERS, BUT IT'S CLEAR TO ME
THAT IT'S HARDER AND HARDER TO
GET PEOPLE TO DO ONLINE SURVEYS.
>> ONE MORE QUESTION.
HOW LONG DID THE SURVEY TAKE,
LIKE A TIME?
>> THEY'RE USUALLY DESIGNED TO
ONLY TAKE -- I WOULD SAY THE
FEDERAL EMPLOYEE VIEWPOINT
SURVEY AT MOST WOULD TAKE YOU 20
MINUTES.
THE SURVEY OF PATIENT SAFETY,
PROBABLY ABOUT THE SAME.
IT'S NOT HOURS.
ONCE YOU GET STARTED, YOU CAN GO
PRETTY FAST.
BUT -- YEAH.
>> OKAY.
THANK YOU.
>> 10 MINUTES -- DR. LANG SAYS
10 MINUTES FOR THE SURVEY OF
PATIENT SAFETY.
I'M A SLOW READER, IT MIGHT TAKE
ME 20.
OKAY.
JACK?
>> ON THAT EMPLOYEE SURVEY, I'VE
SEEN IN OTHER AGENCIES WHERE
THERE'S BEEN A COMPARISON TO THE
TOTAL FEDERAL EMPLOYEE WORKFO
WORKFORCE.
>> NIH DOES REALLY WELL, I THINK
OUR NUMBERS FARE WELL.
SO I KNOW THIS IS BEING WEBCAST.
I DON'T KNOW THAT EVERYBODY
COULD VETS THE LEADERSHIP SPOT
AND NASA HAS BEEN THE LEADER
FOREVER.
NOW, WE THINK THEY CHEAT, BUT AS
A MATTER OF FACT WE'RE PRETTY
CONFIDENT THEY CHEAT.
AS A MATTER OF FACT THAT WAS
EVEN DISCUSSED AT THE INSTITUTE
DIRECTORS' MEETING A WEEK OR SO
AGO.
BUT "BEAT NASA" IS SORT OF THE
SUBTEXT TO THE SORT OF
FEDERAL --
>> THIS IS WHY I ASKED THE
QUESTION.
>> THANK YOU.
AGAIN, WE TALKED LAST YEAR,
JACK, AND YOU SAID, MOST PEOPLE
WOULD BE REALLY HAPPY WITH THOSE
NUMBERS, JIM.
AND I GOT IT.
BUT I STILL WANT TO DO BETTER.
THANKS.
>> JIM, I HAVE ONE QUESTION.
SO IN TERMS OF SURVEY FATIGUE
BEING REAL, BUT WHAT ABOUT REAL
FATIGUE AND RESILIENCE?
WHAT ARE YOU SEEING AND HEARING
AROUND THAT?
>> SO THAT'S WHY THIS WORKPLACE
WELLNESS GROUP HAS STOOD UP.
ANN BERGER AND JOHN POLLACK
TALKED ABOUT THAT AT THE LAST
CLINICAL CENTER RESEARCH
HOSPITAL BOARD MEETING.
AN NHAS LEFT BUT WE HAVE PEOPLE
FILLING IN BEHIND HER.
AND I THINK -- I HATE TO SAY IT
BUT THERE'S GOING TO BE ANOTHER
SURVEY THAT GOES OUT TO THE
CLINICAL CENTER STAFF IN A WEEK
OR SO THAT'S, QUOTE, A BURNOUT
SURVEY.
SO I BELIEVE -- I ABSOLUTELY
BELIEVE THAT -- BUT IT'S REALLY
HARD TO KNOW WHAT WE'RE GOING TO
DO ABOUT IT.
SO MAYBE WE'LL GET SOME IDEAS
FROM THE SURVEY.
MAYBE WE WON'T GET VERY MANY
SURVEYS BACK AND PEOPLE ARE
BURNED OUT ABOUT SURVEYS, SO
WE'LL SEE, BUT WE DO HAVE --
EACH DEPARTMENT HAS SORT OF A
SMALL WELLNESS GROUP, A SMALL
WELLNESS COMMITTEE, SOMEBODY
THERE WHO INTERFACES WITH THE
HOSPITAL LEADERSHIP AND IS SORT
OF RESPONSIBLE FOR CONNECTING
THEM.
WE HAVE A VERY GOOD BEREAVEMENT
PROGRAM THAT OUR SPIRITUAL CARE
FOLKS RUN.
OUR LATEST IS A CODE LAVENDER,
RIGHT?
THAT'S OUR LATEST INITIATIVE, IS
A CODE LAVENDER, WHICH IS, YOU
KNOW, YOUR GROUP IS JUST KIND OF
HAVING A TOUGH TIME AND YOU WANT
SOME PEOPLE TO COME AROUND AND
DO A LITTLE HIGH TOUCH AND
LISTEN AND TALK AND DO THAT.
WE HAVE A NUMBER OF -- AND WE
HAVE EMPLOYEE ASSISTANCE PROGRAM
EFFORTS, AND WE OF COURSE
ENCOURAGE PEOPLE TO USE OUR
SPIRITUAL CARE DEPARTMENT.
OKAY.
>> THANKS VERY MUCH.
APPRECIATE IT.
ANY OTHER QUESTIONS FOR
DR. GILMAN?
IF NOT, WE'RE JUST A LITTLE BIT
AHEAD OF TIME BUT WITH
DR. HADIGAN HERE, WE'LL GO
AHEAD, CHIEF MEDICAL OFFICER FOR
THE CLINICAL CENTER, A POSITION
THAT SHE'S HELD SINCE OCTOBER OF
2021, WHEN SHE BECAME THE CHIEF
MEDICAL OFFICER AND CLINICAL
DIRECTOR FOR THE CLINICAL
CENTER.
COLLEEN WILL SHARE HER EXCELLENT
PRESENTATION ON THE CLINICAL
CENTER'S ACTION PLAN AND
APPROACH TO IDENTIFYING AND
ADDRESSING HEALTHCARE
DISPARITIES IN THE PATIENT
POPULATION THAT WE HAVE.
>> I AM REALLY HAPPY TO BE HERE
AND NOT IN MONTGOMERY COUNTY
COURT, AND ALSO BECAUSE I HAVE
BEEN WORKING ON THIS FOR QUITE
SOME TIME AND I'M REALLY HAPPY
TO BE ABLE TO BE HERE AND TO
TAKE QUESTIONS AFTER THE
PRESENTATION.
BEFORE I START I'M ACTUALLY
GOING TO GO COMPLETELY OFF TOPIC
AND EXPLAIN THAT I WAS BORN AND
RAISED IN POUGHKEEPSIE,
NEW YORK.
SO FOR THOSE OF YOU USING THE
WORD P KIP SEE I WANT TO CLARIFY
THERE'S NO B OR C IN
POUGHKEEPSIE.
WHEN YOU'RE A FIRST GRADER AND
YOU HAVE TO SPELL IT IN YOUR
ADDRESS, YOU LEARN IT QUICKLY,
THAT IT'S NOT AN EASY WORD TO
SPELL.
AND IF ANYBODY WANTS MORE ABOUT
POUGHKEEPSIE LATER, I CAN FILL
YOU IN.
OKAY.
SO NOW, ON TO THIS.
AS YOU ALL KNOW, A CRITICAL
PIECE OF OUR MISSION IN
DELIVERING CARE FOR OUR RESEARCH
PATIENTS IS THAT WE'RE COMMITTED
TO CONTINUOUS IMPROVEMENT OF
QUALITY AND HEALTH OUTCOMES FOR
OUR PATIENTS, AND IN ORDER TO DO
THAT, WE ALSO WANTED TO HAVE
CONTINUOUS IMPROVEMENT OF THESE
OUTCOMES BY IDENTIFYING AND
MONITORING HEALTHCARE
DISPARITIES WITH THE GOAL TO BE
ABLE TO ADDRESS THEM AND MEASURE
THEM IN A MEANINGFUL WAY.
SO WE DEVELOPED A HEALTH EQUITY
CLINICAL CENTER STRATEGY, THE
PURPOSE OF WHICH WAS TO BE ABLE
TO FULLY RESPOND TO THE JOINT
COMMISSION HEALTH EQUITY
STANDARDS WHICH ASK US TO
IDENTIFY HEALTHCARE DISPARITIES
IN OUR PATIENT POPULATION TO
STRATIFY QUALITY AND SAFETY DATA
USING SOCIODEMOGRAPHIC
CHARACTERISTICS AT THE CLINICAL
CENTER, AND WE'VE DEVELOPED AN
ACTION PLAN TO APPROACH THIS,
TO IDENTIFY IT AND HOPEFULLY BE
ABLE TO MAKE IMPROVEMENTS.
I HAVE BEEN LEADING THIS BUT
HAVE BEEN WORK CLOSELY WITH
DR. LANG, WITH TRISH COFFEY AND
HEALTH INFORMATION MANAGEMENT
AND CECE HENRY, SCIENTIFIC
DIVERSITY ADVISER, CRITICAL TO
THIS DATA COLLECTION WAS A
PRESIDENTIAL MANAGEMENT FELLOW
WHO WORKED WITH ME TO GET THESE
DATA PUT TOGETHER.
OUR PLANNED STRATEGY AND
ACTIVITIES WILL BE THAT
ANNUALLY, WE WILL PUT TOGETHER
SUMMARY DATA OF INPATIENT HEALTH
OUTCOMES BEGINNING WITH FISCAL
YEAR 2022, WHICH IS THE DATA
I'LL BE SHARING WITH YOU TODAY.
IDENTIFY FOCUS AREAS FOR
ADDRESSING HEALTHCARE
DISPARITIES THAT ARE CAPTURED
FROM OUR DATA REPORTING, AND
THEN MONITOR AND EVALUATE ANNUAL
REPORT THEREAFTER TO SEE IF WE
CAN MEASURE CHANGE OR PROGRESS,
AND THEN EVALUATE AND STRATIFY
THE PATIENT SATISFACTION DATA,
SOME OF WHICH I'VE SHARED WITH
THIS GROUP BEFORE USING OUR
PRESS GANEY SURVEY DATA WHICH I
WON'T BE PRESENTING HERE TODAY.
NOW AS DR. GILMAN CLEARLY
ALLUDED TO, THIS IS A
CHALLENGING TOPIC FOR US BECAUSE
WE DON'T FALL UNDER A LOT OF THE
NORMAL RUBRICS OF WHAT'S USED TO
IDENTIFY DISPARITIES OR HEALTH
EQUITY.
WE ARE NOT GOING TO BE LOOKING
AT PERCENT OF INDIVIDUALS WHO
HAD COLON CANCER SCREENING OR
HAVE HEMOGLOBIN A1Cs WITHIN
THEIR TARGET GOALS.
I ALSO WILL NOT BE PRESENTING
DATA RELATED TO ACCESS.
IT DOESN'T MEAN THAT WE WON'T
EVENTUALLY GET THERE, BECAUSE
OBVIOUSLY ACCESS TO CLINICAL
RESEARCH CARE SHOULD BE
EQUITABLE.
AND IS AN AREA THAT IS
OF FOCUS, PARTICULARLY AMONG
MANY OF OUR ICs.
HOWEVER, AS THE CLINICAL CENTER
CMO AND OUR DATA, I ONLY SEE THE
PEOPLE WHO GET ENROLLED IN
TRIALS.
SO IN OTHER WORDS THE DATA ON
WHO'S BEING SCREENED AND NOT
MAKING IT INTO THE CLINICAL
CENTER, I DON'T HAVE THE
DENOMINATOR.
SO IN ORDER TO KNOW WHETHER OR
NOT WHO'S COMING IN IS
REPRESENTATIVE OF WHO'S EITHER
BEEN REFERRED OR WHO HAS ACCESS
IS A TRICKIER QUESTION THAT WE
HAVE YET TO FIGURE OUT A CLEAR
WAY TO LOOK AT IT.
SO WHAT I AM GOING TO SHOW YOU
IS I WANT TO SAY, THIS IS MY
FIRST AT BAT, OKAY, SO JUST BE
PATIENT AND KNOW THAT I INTEND
TO WORK ON THIS TO MAKE IT AND
REFINE IT BETTER AS WE GO
FORWARD, BUT WE WANTED TO START
SOMEWHERE AND WE TRIED THE BEST
WE COULD WITH WHAT WE KNEW WE
COULD LOOK AT.
WHICH IS ALSO WHY WE'RE FOCUSING
ON INPATIENT DATA FOR WHICH WE
HAVE BETTER METRICS AND EASIER
POLLABLE OUTCOMES RELATED TO
SOME OF THE STANDARD BENCHMARK
OUTCOMES.
SO THE SOCIODEMOGRAPHIC
CHARACTERISTICS OR SOCIAL
DETERMINANTS OF HEALTH THAT WE
HAVE ARE SEX, AGE, RACE,
ETHNICITY, PREFERRED OR
PREDOMINANT LANGUAGE, AND
CATEGORIZED FOR THE SAKE OF THIS
AS ENGLISH OR NON-ENGLISH,
INSURANCE STATUS, AND Z CODES.
NOW, FOR THOSE OF YOU WHO MAY
NOT BE FAMILIAR WITH Z CODES,
THESE ARE USED TO IDENTIFY AND
ASSIGN DIFFERENT VULNERABILITIES
WITHIN PATIENT POPULATIONS TO
CERTAIN SOCIODEMOGRAPHIC
CHARACTERISTICS.
THE WAY THAT WE GENERATE Z CODES
AT THE CLINICAL CENTER IS THAT
TRISH COFFEY'S GROUP IN HIMD
DOES CHART REVIEW AND IF THEY
IDENTIFY THE PRESENCE OF
EVALUATION OR DOCUMENTATION OF
ONE OF THESE ISSUES, SUCH AS
CHALLENGES RELATED TO EDUCATION
AND LITERACY, UNEMPLOYMENT OR
JOB INSECURITY, OR HOUSING
INSECURITY, THOSE WERE THE KEY
CODES THAT WE LOOKED FOR, THEN
THAT WILL BE -- THAT WAS
DISCOVERABLE AND ADDED TO THE
DATASET.
BUT IT'S REALLY IMPORTANT TO
NOTE THAT THE ABSENCE OF A Z
CODE IN OUR DATASET DOES NOT
MEAN THAT AN INDIVIDUAL WAS
SYSTEMATICALLY EVALUATED AND
FOUND NOT TO HAVE AN ISSUE
RELATED TO THAT CODING.
IN TERMS OF OUR OUTCOMES, WE'VE
DECIDED TO LOOK AT LENGTH OF
STAY WHICH WAS DERIVED FROM THE
ELECTRONIC MEDICAL RECORD,
DEATHS WITHIN THE HOSPITAL,
DEATH WITHIN 30 DAYS OF
DISCHARGE, UNPLANNED ICU
ADMISSIONS, SO THESE ARE TRACKED
THROUGH THE OFFICE OF PATIENT
SAFETY AND CLINICAL QUALITY, BUT
IT DOES NOT INCLUDE A PLANNED
ADMISSION EITHER BECAUSE THE
PROTOCOL INDICATED AN ICU
OBSERVATION OR IF IT WAS A
POST-OP CARE PI CARE PATIENT WHS
COMPLEX ENOUGH UNPLANNED TO GO
TO THE ICU.
THEN THERE ARE THE CENTRAL LINE
ASSOCIATED BLOODSTREAM
INFECTIONS I'LL REFER TO AS
CLABSI.
THESE ARE DONE THROUGH A
COMBINATION OF DATA PULLS WHEN
THERE'S A LINE IS PLACED,
WHETHER OR NOT THERE'S A
POSITIVE CULTURE AND THEN
VERIFIED BY OUR HOSPITAL
EPIDEMIOLOGY SERVICE.
CAUTI IS A CATHETER ASSOCIATED
URINARY TRACT INFECTION
COLLECTED IN THE SAME WAY.
SURGICAL SITE INFECTION IS A
COMBINATION OF EMR PULL FOR
SURGERY, A POSITIVE BLOOD
CULTURE, AND THEN A VERIFICATION
BY HOSPITAL EPIDEMIOLOGY
SERVICES.
AND THEN FINALLY, OUR FALLS DATA
WHICH IS EXTRACTED FROM THE EMR
AND OUR EVENT REPORTING SYSTEM.
I APOLOGIZE IF THIS IS HARD TO
READ BUT THESE ARE THE
CHARACTERISTICS FOR -- SO I DID
FISCAL YEAR, NOT CALENDAR YEAR,
SO THE NUMBERS MAY VARY FROM
OTHER THINGS IF YOU'VE SEEN THEM
AS CALENDAR YEAR.
SO THERE WERE 2900 INPATIENT
ADMISSIONS DURING FISCAL YEAR
2022.
THE AVERAGE AGE OF OUR PATIENTS
ADMITTED WERE 45.
THERE'S THE DIFFERENT AGE
BRACKET DISTRIBUTIONS WHICH WE
EVALUATED THEM BY THOSE
CATEGORIES LOOKING FOR
DIFFERENCES IN AGE OUTCOMES.
PRO PRETTY EVEN DISTRIBUTION
MALE/FEMALE.
IN TERMS OF ENGLISH SPEAKING
LANGUAGE, THEY WERE
PREDOMINANTLY ENGLISH-SPEAKING
BUT THE SECOND MOST FREQUENT
LANGUAGE WAS SPANISH AND ANOTHER
SUBPOPULATION OF OTHER FOR THE
SAKE OF THE FUTURE EVALUATIONS
IT WILL BE ENGLISH VERSUS
NON-ENGLISH SO WE INCLUDED THE
99 A99 IN WITH THE SPANISH SPEA.
THE Z CODES, THERE WAS VERY
LIMITED DATA AVAILABLE ON Z
CODES COMPARED TO THE TOTAL
CAPTURED WP THE DATASET.
SO JUST RECOGNIZING THERE'S A
RELATIVELY SMALL NUMBER, BUT 124
INDIVIDUALS HAD ANY Z CODE AND
BECAUSE THE INDIVIDUAL Z CODES
WERE SO INFREQUENT, THE AN ANALS
YOU'LL SEE ARE ANY Z CODE.
THEN THERE'S OUR RACIAL GROUP
BREAKDOWN AS WELL AS OUR
ETHNICITY BREAKDOWN WHICH
FOLLOWS UNDER THE WAY WE CODIFY
ETHNICITY AND RACE BY FEDERAL
GOVERNMENT CATEGORIES.
THESE ARE PATIENTS
SELF-IDENTIFIED ON ADMISSION.
THEN INSURANCE STATUS, SO WE
DON'T BILL.
SO THAT IS A CHALLENGE FOR US IN
THE SENSE THAT WE DON'T EVEN
REQUIRE ROUTINELY COLLECTING
INSURANCE INFORMATION BUT ON
ADMISSION WE DO ASK, SO PATIENTS
CAN SAY YES, I'M INSURED, THEY
CAN SAY NO, I'M NOT INSURED, BUT
IN SOME IP INSTANCES IT MIGHT JT
BE BLANK.
THEN WHEN IT'S BLANK, I DON'T
KNOW IF THEY WERE ASKED, IF THEY
WERE NOT ASKED OR IF THEY
DECLINED TO ANSWER.
THEN IN TERMS OF OUTCOMES, AS
DR. GILMAN SHOWED OUR AVERAGE
LENGTH OF STAYS ARE 8 OR 9 BUT
THEN WE HAVE A REALLY WIDE RANGE
WITH SOME LENGTH OF STAY UP TO
284 DAYS DURING THAT YEAR.
IN TERMS OF DEATHS IN HOSPITAL,
IT'S RELATIVELY INFREQUENT BUT
THERE WERE 38 DEATHS, THERE WERE
33 DEATHS AFTER DISCHARGE WITHIN
30 DAYS, THERE WERE 135
UNPLANNED ICU ADMISSION AND THEN
AGAIN, OUR CLABSI, CAUTI AND
SURGICAL SITE INFECTION RATES
ARE QUITE LOW AND THERE WERE 28
FALLS REPORTED THAT YEAR.
OKAY.
SO NOW I'M GOING TO WALK YOU
THROUGH JUST ONE OF THE
VARIABLES TO KIND OF HELP YOU
SEE HOW I BROKE IT DOWN AND HOW
THE ANALYSES WERE DONE, AND THEN
I'LL SHOW LESS OF THE INDIVIDUAL
DATA BUT GIVE YOU THE AGGREGATE
RESULTS.
AND SO ONE OF THE THINGS HERE IS
JUST TO SAY THAT WHEN YOU LOOKED
AT WOMEN VERSUS MEN, WITHIN THE
DIFFERENT OUTCOMES THAT WE
MEASURED THERE WERE REALLY NO
SIGNIFICANT DIFFERENCES WITH
RESPECT TO LENGTH OF STAY,
WHETHER OR NOT THEY EXPIRED IN
THE HOSPITAL OR SHORTLY AFTER
DISCHARGE, UNPLANNED ICU
ADMISSIONS WERE SIMILAR, CLABSI
AND CAUTI WERE SIMILAR.
THERE WAS A SLIGHT INCREASE IN
THE PREPONDERANCE OF SURGICAL
SITE INFECTION IN MEN VERSUS
WOMEN.
AND THAT WAS STATISTICALLY
SIGNIFICANT BY JUST DOING A
STRAIGHT COMPARISON OF THE
PERCENTS.
AND THEN THERE WAS NO DIFFERENCE
IN FALLS BY SEX.
SO IN GENERAL, THERE APPEARED TO
BE AN INCREASED FREQUENCY IN MEN
VERSUS WOMEN, 50% OF MEN AND 48%
WERE EQUALLY LIKELY TO HAVE HAD
A SURGICAL PROCEDURE, SO IT
WASN'T THAT MEN WERE MORE LIKELY
TO HAVE SURGERY, BUT WHEN I DID
A RELATIVE RISK FOR SURGICAL
SITE INFECTION AND YOU SEE THAT
WHILE THERE WAS A 4 FOLD
INCREASED RISK, THE FREQUENCY
WAS SO LOW THAT IT WAS NOT
STATISTICALLY SIGNIFICANT WHEN
LOOKED AT THIS WAY BECAUSE THE
CONFIDENCE INTERVAL CROSSED 1.
SO THERE WERE FEW CASES BUT
STILL SOMETHING POTENTIALLY TO
LOOK INTO, AND TO CONSIDER IF
THERE ARE DIFFERENT TYPES OF
SURGERIES OR DIFFERENT
VULNERABILITIES RELATED TO MEN
VERSUS WOMEN IN OUR POPULATION.
SO THEN IN LOOKING AT RACE FOR
THE COMPLEXITY OF THE SLIDES AND
THE SMALLER NUMBERS, AGAIN, RACE
OTHER THAN ASIAN, BLACK, AFRICAN
AMERICAN OR WHITE WERE COLLAPSED
TOGETHER, AND THIS IS THE LENGTH
OF STAY INFORMATION, AND YOU CAN
SEE HERE THAT WHITE AND ASIAN
LENGTH OF STAY DID NOT DIFFER,
BUT WAS SHORTER THAN LENGTH OF
STAY FOR THOSE WHO WERE
BLACK/AFRICAN AMERICAN OR OTHER
RACE.
AND THAT'S WHAT I JUST
SUMMARIZED.
THERE WERE NO SIGNIFICANT
DIRVESES BY THE RACE CATEGORIES
FOR ANY OF THE OTHER OUTCOMES OF
DEATH IN THE HOSPITAL OR WITHIN
30 DAYS OF DISCHARGE, UNPLANNED
ICU ADMISSIONS OR FALLS, AND
ALSO THE CLABSI, CAUTI AND
SURGICAL SITE INFECTION WERE NOT
SIGNIFICANT BUT MAY HAVE BEEN
TOO FEW NUMBERS WITHIN THE
DIFFERENT RACE CATEGORIES TO
DETECT A DIFFERENCE.
SO NOW TO KIND OF GO THROUGH THE
AGE CATEGORIES, THERE WERE NO
SIGNIFICANT DIFFERENCES IN
LENGTH OF STAY OR ANY OF THE
MEASURED OUTCOMES FOR AGE, AND
SIMILARLY FOR ETHNICITY, LATIN
HISPANIC VERSUS NON-, THERE WERE
NO SIGNIFICANT DIFFERENCES IN
LENGTH OF STAY.
AND NOW WE'RE GOING TO GO TO
LANGUAGE.
OKAY.
SO WHEN DIVIDED BY THOSE WHO
WERE ENGLISH-SPEAKING OR
IDENTIFIED AS ENGLISH-PROFICIENT
VERSUS NON, LENGTH OF STAY WAS
LONGER.
LIKELIHOOD OR PERCEPT OR RATE OF
PERCENT OR RATE OFDEATH WHILE IS
HIGHER, AS WAS DEATH WITHIN 30
DAYS OF DISCHARGE, BUT THERE WAS
NO DIFFERENCE IN FALLS.
THERE WAS NO SIGNIFICANT
DIFFERENCE IN UNPLANNED ICU
ADMISSIONS.
AND EVEN THOUGH IT LOOKED LIKE
THE NUMBERS WERE DIFFERENT FOR
CLABSI, THEY WEREN'T.
FOR CAUTI, THERE APPEARED TO BE
HIGHER FREQUENCY OF
CATHETER-ASSOCIATED URINARY
TRACT INFECTIONS IN NON-ENGLISH,
AND THEN SURGICAL SITE INFECTION
WAS NOT STATISTICALLY DIFFERENT
BUT APPEARED TO BE HIGHER,
SLIGHTLY, AT LEAST, IN THE
NON-ENGLISH.
SO THEN IN RE-ANALYZING THAT
DATA, USING THE RELATIVE RISKS,
THESE WERE SIGNIFICANT.
SO THE RELATIVE RISK OF DEATH IN
HOSPITAL WITHIN 30 DAYS WAS
STATISTICALLY SIGNIFICANT BUT
WHEN YOU DO THE RELATIVE RISK
FOR CAUTI AGAIN PROBABLY BECAUSE
OF THE RELATIVELY SMALL NUMBER,
THE INSTABILITY OF THE ESTIMATE,
IT WAS NOT STATISTICALLY
SIGNIFICANT, BUT STILL HIGHER.
NOW WHEN WE LOOK AT INSURANCE
STATUS, AGAIN I'M JUST REMINDING
THAT THE WAY WE LOOK AT
INSURANCE STATUS AND
VULNERABILITY MAY BE CONSIDERED
THE OPPOSITE WAY O A FEE FOR
SERVICE HOSPITAL WOULD LOOK AT
IT.
A FEE FOR SERVICE HOSPITAL MIGHT
WORRY THAT THEY'RE
PREFERENTIALLY RETAINING INSURED
PATIENTS LONGER, OR -- IN ORDER
TO GAIN MONEY BUT IN OUR
INSTANCE, MY CONCERN WAS MORE
THAT AN INDIVIDUAL WHO WAS
UNINSURED MAY HAVE NO OTHER
ALTERNATIVE AND HAVE A PROLONGED
LENGTH OF STAY IN A RESEARCH
HOSPITAL BECAUSE OF THEIR
VULNERABILITY FOR NOT HAVING
OUTSIDE RESOURCES.
SO WITH THAT IN MIND, WHEN WE
LOOKED AT THE DIFFERENCES
BETWEEN INSURED, UNINSURED,
WHICH MEANS THAT THEY IDENTIFIED
AS NO INSURANCE OR WE HAVE NO
DATA ON IT, WHICH WAS MISSING IN
A LARGE PERCENT OF THE
POPULATION THAT WE LOOKED AT,
THERE WAS A SIGNIFICANTLY HIGHER
RATE OF UNPLANNED ICU ADMISSION
FOR THOSE WHO WERE INSURED.
THERE WAS AN INCREASE IN LENGTH
OF STAY FOR THOSE WHO EITHER
WERE INSURED OR YOU UNINSURED
RELATIVE TO THOSE FOR WHICH
THERE WAS NO DATA.
THERE WAS AN INCREASED
LIKELIHOOD OF DEATH IN HOSPITAL
AND DEATH WITHIN 30 DAYS OF
DISCHARGE AMONG THOSE WHO WERE
INSURED VERSUS THE OTHER GROUPS.
ALTHOUGH IT WAS NOT
STATISTICALLY SIGNIFICANT FOR
THE 30 DAYS.
AND THEN HIGHER RATES OF INSURED
CENTRAL LINE ASSOCIATED
INFECTIONS AND NO DIFFERENCE IN
CAUTI OR SURGICAL SITE
INFECTIONS.
AND THERE WAS NO DIFFERENCE IN
FALLS BY INSURANCE STATUS.
SO JUST AS A SUMMARY, AGAIN,
UNPLANNED ICU ADMISSIONS WERE
MORE COMMON AMONG THE INSURED,
DEATH IN HOSPITAL WAS MORE
COMMON AMONG THE INSURED, AND
CLABSI WAS MORE FREQUENT AMONG
THE INSURED.
COMBINED, TO DO THESE RELATIVE
RATES, I COMBINED NO INSURANCE
AND NO DATA FOR THE RELATIVE
RISK TO THOSE WHO WERE INSURED.
WHICH IS WHY THE NUMBERS MIGHT
BE SLIGHTLY DIFFERENT IN THE
PREVIOUS SLIDES.
ALL RIGHT, ANY Z CODE.
SO REMEMBER THERE WAS ONLY 124
INDIVIDUALS WHO WERE CODED WITH
A Z CODE SO THE REMAINDER OF THE
POPULATION HAD NO Z CODE DATA,
BUT IF YOU THINK ABOUT THE
LIKELIHOOD OF THERE BEING AN
ISSUE RESULTING IN A POSITIVE
DOCUMENTATION SUGGESTS THAT
THESE ARE PERHAPS MORE
VULNERABLE INDIVIDUALS WITH
RESPECT TO HOUSING INSECURITY,
LITERACY, AND JOB SECURITY.
SO THERE WERE NO DIFFERENCES IN
UNPLANNED ICU ADMISSIONS BUT
THOSE WHO HAD A Z CODE HAD A
LONGER LENGTH OF STAY.
THEY HAD A HIGHER RATE OF DEATH
WITHIN THE HOSPITAL BUT NOT
AFTER DISCHARGE.
AND THOSE WERE THE ONLY TWO
SIGNIFICANT DIFFERENCES THAT
WERE FOUND AND DEATH IN HOSPITAL
WAS MORE COMMON WITH ANY SEA.
CODE WITH A RELATIVE RISK OF
3.4.
SO I KNOW THAT'S A LOT OF
INFORMATION.
THIS IS A SUMMARY SLIDE AND
YOU'LL HAVE THESE SLIDES THAT
YOU CAN LOOK OVER.
I THINK THAT THE AREA I WAS MOST
FOCUSED ON WAS THE
LANGUAGE-RELATED PART WITH
RESPECT TO NON-ENGLISH-SPEAKING
PATIENTS HAVING LONG LENGTH OF
STAY, PERHAPS MORE LIKELY TO
HAVE A CATHETER-ASSOCIATED
INFECTION, AND MORE LAKELY TO
DIE LIKELY TODIE WITHIN THE HOSR
WITHIN 30 DAYS.
AND SO IN TERMS OF OUR NEXT
STEPS, AFTER REVIEWING THESE
FINDINGS, WE'RE WORKING WITH THE
HEALTH EQUITY WORKING GROUP TO
SEE WHAT WE WOULD LIKE TO DO TO
ADDRESS IT.
OBVIOUSLY WE'RE GOING TO LOOK AT
THE DATA THAT WE HAVE GOT UNDER
FISCAL YEAR 2023 TO SEE IF IT
MATCHES UP WITH THE OBSERVATIONS
FROM THIS PAST YEAR.
BUT WE ALSO WANTED TO IDENTIFY
SPECIFIC PROJECTS THAT COULD BE
DESIGNED TO ADDRESS THESE
DISPARITIES.
PATIENTS WITH LIMITED
PROFICIENCY IN ENGLISH ARE
UNIQUELY VULNERABLE IN OUR
HOSPITAL.
AND IN 2023, BEFORE WE EVEN HAD
THESE DATA, WE ACTUALLY WORKED
ON CODIFYING OUR POLICY RELATED
TO LANGUAGE ACCESS.
WE WERE ALREADY DOING THIS BUT
WE ADDED SOME ELEMENTS TO IT AND
I THINK THERE'S MORE THAT'S
GOING TO HAPPEN IN THIS SPACE.
BUT OBVIOUSLY THE PURPOSE OF THE
POLICY IS TO MACK SURE THAT
LANGUAGE ACCESS SERVICES ARE
AVAILABLE TO PATIENTS AND THEIR
CAREGIVERS WITH LIMITED ENGLISH
PROFICIENCY TO PROMOTE THEIR
CARE IN A CULTURALLY AND
LINGUISTICALLY APPROPRIATE
MANNER CONSISTENT WITH FEDERAL
LAW REGULATIONS AND POLICIES,
AND THESE SERVICES ARE AVAILABLE
IN BOTH ORAL, WRITTEN, AND
ELECTRONIC FORMS AS WELL AS SIGN
LANGUAGE AT NO COST TO OUR
PATIENTS OR CAREGIVERS.
SO THIS POLICY INCLUDED
ESTABLISHING AN ENGLISH
PROFICIENCY REQUIREMENT FOR
BILINGUAL HEALTHCARE PROVIDERS
AND SO THE REASON IS THAT IF YOU
CAN IMAGINE, WE HAVE A LARGE
SPANISH POPULATION.
IF YOU'RE A CAREGIVER AT THE
BEDSIDE AND YOU HAVE SPANISH AS
A SECOND LANGUAGE, YOU'RE GOING
TO BE NOT ONLY PREFERENTIALLY
ASSIGNED TO THOSE PATIENTS BUT
INCLINED TO USE YOUR LANGUAGE TO
ASSIST IN THE CARE OF THOSE
PATIENTS.
AND WE APPRECIATE THAT, AND WE
UTILIZE IT, BUT WE ALSO WANT TO
MAKE SURE THAT WE'RE UTILIZING
IT APPROPRIATELY.
AND SO BRENDA ROBLES, WHO IS THE
LEAD FOR OUR TRANSLATION
SERVICES AND BILINGUAL STAFFING
FLUENCY TESTING SHARED THESE
SLIDES WITH ME.
AND SO WE IMPLEMENTED THIS,
AGAIN, IN THE BEGINNING OF 2023
AS PART OF THE POLICY WE SAID IN
ORDER TO PRACTICE YOUR JOB IN A
LANGUAGE OTHER THAN ENGLISH, WE
ARE GOING TO ESTABLISH THIS
REQUIREMENT, THAT THE STAFF WHO
HAS THESE PATIENT CARE DUTIES
WOULD UNDERGO BILINGUAL FLUENCY
TESTING TO MAKE SURE THAT THEY
HAVE SOME BASIC COMPETENCY LEVEL
IN ORDER TO PERFORM THEIR JOB IN
A LANGUAGE OTHER THAN ENGLISH AT
THE BEDSIDE.
AND THEN WE'VE ALREADY TESTED
149 STAFF WHO'VE COME FORWARD
VOLUNTARILY TO DO THIS.
SO THIS IS NOT INDIVIDUALS WHO
ARE HIRED TO BE TRANSLATORS.
THESE ARE INDIVIDUALS DOING
THEIR BEDSIDE WORK BUT HAVE
FLUENCY AND SEEK TO BE TESTED IN
ANOTHER LANGUAGE.
AND THERE WAS ONLY A 70% SUCCESS
RATE, SO THAT IS IMPORTANT TO
RECOGNIZE THAT PEOPLE MAY HAVE
THOUGHT THAT THEY HAD SUFFICIENT
FLUENCY BUT THEY MIGHT NOT BE.
AND SO WE WANT TO MAKE SURE THAT
WHEN WE'RE PROVIDING CARE AND
INSTRUCTION THAT WE'RE DOING SO
APPROPRIATELY AND FAIRLY TO
EVERYONE, NOT JUST THOSE WHO
SPEAK ENGLISH.
SO THIS IS AT LEAST ONE STEP
THAT WE'VE DONE TO KIND OF
EARLY-ADDRESS WHAT WE
IDENTIFIED.
WE MAY BE WORKING ON SOME VERY
SPECIFIC CAUTI RELATED CATHETER
CARE AND INSTRUCTIONS IN SOME OF
OUR MOST COMMON LANGUAGES AND
HAVE THEM A LITTLE SPREAD OUT
ACROSS THE HOSPITAL FOR SOME
TRAINING BUT OTHER THAN THAT,
THAT'S WHERE WE ARE RIGHT NOW.
AND SO I WELCOME QUESTIONS,
COMMENTS, OR ANY OTHER
DISCUSSION.
>> I THINK I SEE CRAIG'S HAND
UP.
THANKS VERY MUCH.
AWESOME PRESENTATION.
MY QUESTION WAS ABOUT THE
SIGNIFICANT FINDING REGARDING
LENGTH OF STAY.
YOU MAY HAVE COVERED THIS.
WHAT ARE THE DRIVERS FOR THE
EXTENDED LENGTH OF STAY WITH
RELATED DISPARITIES?
IS IT A ACUTE DISEASE PROBLEM S
IT A POST-DISCHARGE DISPOSITION
PROBLEM?
WHAT'S DRAIFING THAT EXTENDED
LENGTH OF STAY IN THAT
POPULATION?
>> SO THINGS THAT HIGH LENGTH OF
STAY WAS HAVING ANY Z CODE AND
NOT SPEAKING ENGLISH.
SO ONE OF THE THINGS WE KNOW IS
THAT WE HAVE PATIENTS WHO COME
FROM ALL OVER THE WORLD, AND SO
INDIVIDUALS WITH RARE DISEASES
WHO COME TO US
NON-ENGLISH-SPEAKING WITHOUT
NECESSARILY APPROPRIATE
RESOURCES TO LIVE LOCALLY, TO
HAVE STEPDOWN CARE LOCALLY ARE
GOING TO HAVE LONGER LENGTHS OF
STAY.
AND SO MANY OF -- I KNOW IF I
BROUGHT THAT DATA TO MY
INVESTIGATORS AND TEAMS, THEY'RE
LIKE, WELL, OF COURSE I HAVE
LONG LENGTH OF STAY.
MY PATIENT CAME HERE FROM A
FOREIGN COUNTRY, THEY HAVE A
COMPLEX DISEASE, THEY'RE GOING
TO GO THROUGH A TRANSPLANT,
WE'RE GOING TO HAVE A LONG
LENGTH OF STAY.
SO WE EXPECTED SOME OF THAT, BUT
I THINK WE STILL NEED TO BE
SENSITIVE TO IT AND TO MAKE SURE
THAT WHEN THERE ARE
OPPORTUNITIES FOR ALTERNATE
NON-INPATIENT CARE THAT WE
SHOULD BE WORKING ON THAT.
BUT WE HAVE THE LODGE, THE
EDMOND J. SAF FINANCIAL, ER
LODGE, AND YOU'RE GOING TO HEAR
ABOUT THE CHILDREN'S INN, AND
THAT ALSO HELPS TO ALLOW PEOPLE
TO BE CLOSE TO THE NIH, STILL
FAR AWAY FROM HOME AND GET THAT
CARE.
BUT I THINK THERE'S A
PREDISPOSITION FOR SOME OF THOSE
INDIVIDUALS BE LESS LIKELY TO
HAVE THE RESOURCES THEY NEED TO
BE ABLE TO BE DISCHARGED IN A
TIMELY MANNER.
>> GREAT.
THANK YOU VERY MUCH.
>> DAVID?
>> HELLO, DR. HADIGAN.
TERRIFIC PRESENTATION, AND
THANKS TO YOUR TEAM AND YOU FOR
DOING THIS WORK.
I HAD A QUESTION FOR AT LEAST
THE U.S. POPULATION THAT COMES
TO THE CLINICAL CENTER.
HAVE YOU CONSIDERED USING ZIP
CODES OR AREA DEPRIVATION INDEX
FOR THAT POPULATION?
>> WE DID.
WE DISCUSSED IT AND WE STILL MAY
DO IT.
WE WERE CONCERNED HOW WERE WE
GOING TO HANDLE ALL THE NON-U.S.
ZIP CODES, WHICH IS NOT
INSUBSTANTIAL.
BUT IT SOMETHING THAT WE TALKED
ABOUT AND WE DECIDED WE WOULD
LOOK AT THE Z CODES FIRST.
TRISH'S TEAM HAD BEEN DOING THE
WORK, BUT THEN WHEN I SAW HOW
LITTLE CAME BACK, I THINK WE
COULD DO THAT IN A SECOND ROUND
APPROACH OR ADD IT ON TO THE
NEXT ROUND.
>> THANK YOU.
>> DR. DEVASKAR.
>> THANK YOU.
AM I HEARD?
THANK YOU, DR. HADIGAN.
THAT WAS A WONDERFUL
PRESENTATION.
THANK YOU FOR THAT.
AND ALL THE WORK THAT WENT INTO
IT.
I HAVE JUST A FEW QUESTIONS.
ONE IS, DID YOU LOOK AT PATIENT
EXPERIENCE ALONG THESE LINES,
PARTICULARLY WITH THE SOCIAL
VULNERABILITY INDEX AND THEIR
SATISFACTION?
AND THE REASON I ASK THAT IS,
MANY PLACES HAVE INSTITUTED
REALTIME HEALTH EQUITY CHECKS ON
AN EITHER DAILY OR EVERY OTHER
DAY BASIS, AND I WONDERED IF
THAT WOULD HELP IN YOUR
SITUATION.
SO THAT WAS ONE QUESTION.
THE SECOND ONE PARTICULARLY FOR
THE LIMITED ENGLISH PROFICIENCY
PATIENTS, DO YOU HAVE
SIMULTANEOUS TRANSLATION DURING
ROUNDS AND OTHER THINGS WHEN
MEDICAL INFORMATION IS BEING
DISSEMINATED?
THANK YOU.
>> OKAY.
SO THE ANSWER TO THE FIRST
QUESTION IS THAT WE DO -- SO OUR
PATIENT SATISFACTION DATA COMES
FROM PRESS GANEY, THE PRESS
GANEY SURVEY DATA CAN BE SENT
OUT IN MULTIPLE LANGUAGES AND
THEN TRANSLATED BACK, AND WHEN
WE'VE LOOKED AT THE PATIENT
SATISFACTION SURVEY INFORMATION,
WE HAVEN'T SEEN SIGNIFICANT
DIFFERENCES IN SATISFACTION BY
ETHNICITY OR PREFERRED LANGUAGE.
AND I'LL DO ANNUAL PRESENTATIONS
OF THAT DATA.
IT'S LIMITED, HOWEVER, BECAUSE
WE DON'T HAVE THE SAME VARIABLES
DIVIDING OUT THE SURVEY DATA
THAT WE DO IN OUR EMR.
AND THEY'RE NOT LINKED SO WE
DON'T LINK THE SURVEY DATA
DIRECTLY TO THIS BECAUSE OF HOW
IT'S IDENTIFIED AND HOW IT'S
RETURNED BACK TO US.
I'M NOT SURE HOW EASY THAT WOULD
BE OR IF IT'S EVEN POSSIBLE
BECAUSE THE SURVEY DATA COMES
BACK DE-IDENTIFIED, IT'S
ANONYMOUS, SO WE TEND NOT TO
RE-CODE IT BACK.
WE CAN, AND WE DO WHEN THERE'S A
SIGNIFICANT SAFETY ISSUE BUT WE
DON'T OTHERWISE RE-IDENTIFY IT.
AND THEN THE SECOND QUESTION HAD
TO DO WITH SIMULTANEOUS
TRANSLATION.
THERE ARE A SMALL NUMBER OF OUR
TRANSLATORS WHO DO SIMULTANEOUS
TRANSLATION.
BUT NOT ALL OF THEM.
AND SO I CAN'T SAY THAT THAT IS
LIKE A STANDARD THAT WE REQUIRE
OR EXPECT.
BUT I HAVE EXPERIENCED IT, IT A
JOY WHEN YOU DO IT, BUT IT'S NOT
THE STANDARD.
>> THANK YOU.
>> REGINA?
>> THANK YOU, DR. HADIGAN.
THAT WAS A FANTASTIC
PRESENTATION.
I REALLY, REALLY APPLAUD THE
WORK.
MY QUESTION IS ABOUT THE Z CODE.
I'M NOT FAMILIAR WITH THAT.
AND I JUST WANT TO MAKE SURE I'M
UNDERSTANDING WHAT IT IS.
SO IS IT ESSENTIALLY A PROXY FOR
LIKE SOCIAL FACTORS THAT MIGHT
NEGATIVELY INFLUENCE HEALTH
OUTCOMES IN YOUR POPULATION?
AND YOU MENTIONED THAT IT WAS
MANUALLY -- IT HAD BEEN MANUALLY
EXTRACTED BY CHART REVIEW, IS
THAT CORRECT?
>> IT MIGHT BE THROUGH A.I.
THERE MIGHT BE A FIRST PASS A.I.
WHERE HEALTH INFORMATION
MANAGEMENT GROUP IS SEEKING
CERTAIN TERMS, CERTAIN
EVALUATIONS.
OFTEN IT'S THINGS DOCUMENTED IN
A SOCIAL WORK NOTE.
AND THEN THEY DO A VERIFICATION
AND SAY YES, THIS MEETS -- I
DON'T KNOW WHAT THEIR CRITERIA
ARE, BUT THEY'LL SAY THERE'S
SUFFICIENT DOCUMENTATION IN THIS
CHART TO SAY THAT THIS
INDIVIDUAL HAS JOB INSECURITY.
THIS INDIVIDUAL HAS HOUSING
INSECURITY.
THIS INDIVIDUAL HAS LITERACY
ISSUES.
>> OKAY.
IT'S FANTASTIC, THANK YOU.
I JUST WONDERED, YOU KNOW, HOW
MUCH TIME IT TOOK.
BUT IF THERE'S AN A.I.
METHODOLOGY, I'M SURE IT MUCH
QUICKER THAN, YOU KNOW, HAVING
PEOPLE DO IT MANUALLY.
THAT'S VERY, VERY IMPRESSIVE TO
BE ABLE TO TRY TO QUANTIFY THAT.
I THINK IT DOES HAVE A HUGE
IMPACT, BUT IT'S HARD TO REALLY
UNDERSTAND THAT.
SO AN APPROACH TO SORT OF
QUANTIFY IT AND BRING IT INTO
THE ANALYSIS REALLY MAKES A
DIFFERENCE.
IT'S HELPFUL.
THE SECOND COMMENT I JUST WANTED
TO MAKE BRIEFLY IS, YOU KNOW, IN
TERMS OF THE LANGUAGE, THAT WAS
ALSO AN OUTCOME THAT, WOW,
THAT'S REALLY TELLING.
AND REALLY LEADS YOU TO THINK
ABOUT SOME DIFFERENT WAYS OF
DOING THINGS.
WE USE A LANGUAGE INTERPRETATION
SERVICE, AND I'M NOT ACTUALLY
FAMILIAR WITH ANY EMPIRICAL
EVIDENCE ON THE EFFECTIVENESS OF
THOSE SERVICES.
I MEAN, YOU HYPOTHESIZE THAT
THEY ARE GOING TO WORK, BUT
BECAUSE A LOT OF THE INFORMATION
THAT IS BEING TRANSLATED IS
FAIRLY COMPLEX, I DON'T KNOW IF
THERE'S A LOT OF SUBSTANTIAL
EVIDENCE ABOUT THE BENEFIT OF
THOSE SERVICES, SO JUST
SOMETHING TO THINK ABOUT.
>> WE ARE ACTIVELY LOOKING AT
ALL OF THE SERVICES.
WE HAVE A SIRACOMM PHONE
TRANSLATION, WE HAVE IN-HOUSE
TRANSLATION AND ALSO
COINCIDENTLY OR NOT
COINCIDENTALLY, YOU MAY BE AWARE
THAT THE FDA JUST INCREASED
THEIR GUIDANCE ON REQUIREMENT OF
TRANSLATION OF RESEARCH CONSENT
FORMS, SO SIMULTANEOUSLY OUR
CENTRAL IRB HAS JUST INITIATED A
POLICY DEMANDING THAT THERE BE
FULL TRANSLATION OF THE WRITTEN
CONSENT FORMS AND THAT WE MOVE
AWAY FROM USING THE SHORT FORM
WITH AN ORAL TRANSLATION FOR
THE PURPOSES OF JUST KIND OF
CLEARER, BETTER ACCESS TO
NON-ENGLISH INFORMATION THAT IS
COMPLEX, AS YOU POINT OUT.
>> JIM?
DAVID.
>> THANK YOU, DR. HADIGAN.
THE INFORMATION WAS EYE OPENING
IN CERTAIN RESPECTS.
A COUPLE OF COMMENTS AND A
QUESTION BOTH FOR YOU AND
DR. SCHOR.
BECAUSE YOU'RE LIMITED IN TERMS
OF THE DATA YOU HAVE OF PEOPLE
THAT WERE ADMITTED, EVEN THOUGH
THE CLINICAL CENTER IS INVOLVED
IN THE PRE-ADMISSION SCREENING
THAT THE PROTOCOLS DO, DOES
ANYBODY LOOK AT THESE SAME
CRITERIA FOR REJECTION FROM THE
PRE-ADMISSION PROTOCOL SCREENING
PROCESS?
SO THAT WE CAN SEE IF THERE IS A
CORRELATION IN DISPARITY BASED
ON SOME OF THE SAME FACTORS
RELATIVE TO THE REJECTION
PROCESS?
THAT'S SOMETHING TO CONSIDER.
I DON'T THINK ANYBODY KNOWS THAT
NOW.
THE OTHER THING IS A POINT ABOUT
LANGUAGE.
PATIENTS ARE NOW BEING
ENCOURAGED TO PROVIDE INSURANCE,
IF YOU ASK WHY YOU NEED
INSURANCE INFORMATION, YOU'RE
TOLD SO THAT IN THE EVENT WE
HAVE TO TRANSFER YOU TO A LOCAL
HOSPITAL, YOUR CARE WILL GO
FASTER AND THIS HELPS GET
PATIENTS MORE MOTIVATED TO
PROVIDE THE INSURANCE
INFORMATION SO I WOULD EXPECT TO
SEE AN UPTICK STARTING THIS YEAR
AND MOVING FORWARD.
AND LASTLY, WITH RESPECT TO
LANGUAGE, AN AREA THAT
TRANSLATION SERVICES ARE
IMPORTANT BUT NOT CURRENTLY
RECOGNIZED IS IN THE CALL CENTER
THAT JUSTIN'S TEAM OPERATES WITH
RESPECT TO PEOPLE SEEKING
INFORMATION ABOUT PROTOCOLS.
I'VE HAD A NUMBER OF PEOPLE TELL
ME THAT THEY'VE TRIED TO GET
INFORMATION AND NOT BEING
PRINCIPALLY ENGLISH-SPEAKING
THAT THAT WAS DIFFICULT.
>> THANK YOU FOR SHARING THAT.
BEFORE DR. SCHOR IF YOU WANT TO
ANSWER, I JUST WANT TO MAKE A
FEW COMMENTS.
SO LET'S SEE, YOU MENTIONED A
LOT OF THINGS.
SO -- THAT'S OKAY.
WHAT WAS THE FIRST QUESTION?
PRE-ADMISSION, RIGHT.
SO I WILL SAY THAT I HAVE
INTERACTED WITH A FEW NCI
INVESTIGATORS WHO HAVE
APPROACHED IT FROM A SLIGHTLY
DIFFERENT WAY WHICH IS THEY WERE
LOOKING AT THEIR TRIALS AND
COMPARING IT TO NATIONAL
REGISTRY DATA TO SAY -- SO THEY
COULD SAY OKAY, THIS STAGE IV
COLON CANCER SHOULD HAVE THIS
RACIAL DISTRIBUTION IN THE U.S.
SO OUR ENROLLMENTS FOR STAGE IV
CANCER TRIALS MATCHING THAT,
WHICH IS ANOTHER WAY OF KIND OF
LOOKING WITHOUT KNOWING WHO WAS
TURNED DOWN, YOU CAN JUST SAY AM
I -- DO I HAVE A GROUP IN MY
STUDY THAT REPRESENTS WHAT WE
KNOW IN THE UNITED STATES SHOULD
REPRESENT THE DISEASE?
SO THAT'S ONE WAY OF GETTING AT
THE KIND OF ISSUE OF WHO DOESN'T
MAKE IT IN.
AND I'M GRATEFUL THAT THEY'RE
LOOKING AT IT AND DOING THAT
TYPE OF WORK.
AND THEN THE SECOND COMMENT WA
WAS -- OH, THE INSURANCE.
I ACTUALLY BELIEVE THAT THE BIAS
TO COLLECT THE INSURANCE WHEN
SOMEONE EITHER GETS ADMITTED TO
THE ICU OR IS ESCALATING IN CARE
MAY ALREADY HAVE ATTRIBUTED TO
SOME OF THAT DATA.
SO IN OTHER WORDS, THAT WE HAVE
A BIAS TO GETTING THE INSURANCE
INFORMATION FOR OUR SICKER
PATIENTS IN CASE WE'RE
ANTICIPATING A TRANSFER TO
ANOTHER HOSPITAL.
SO THAT MAY BE WHY THE UNPLANNED
ICU ADMISSION HAD A HIGHER RATE
OF BEING INSURED BECAUSE
SOMEBODY MAYBE WORKED A LITTLE
HARDER TO GET THE DATA.
OF SO -- BUT YOU CAUGHT THAT BY
KNOWING HOW WE COLLECT THE
INFORMATION AND WHEN.
DR. SCHOR?
>> ACTUALLY THERE ARE A COUPLE
OF OTHER -- I SEE MANY OF THESE
THINGS AT THE LEVEL OF THE IRB
REVIEW BEFORE THEY EVEN MAKE TO
BEING A PROTOCOL IN THE
HOSPITAL.
AND I THINK OUR IRB IS VERY,
VERY MUCH SENSITIZED TO THE
POTENTIAL FOR EXCLUSION CRITERIA
FROM A STUDY TO SELECT FOR A
PARTICULAR POPULATION, AND I
FEEL VERY CONFIDENT THAT
PROTOCOLS THAT DO THAT WITHOUT
EVEN REALIZING IT BECAUSE THEY
HAVE CERTAIN REQUIREMENTS AND
POPULATIONS FOR WHATEVER
SOCIOECONOMIC REASON CAN'T MEET
THOSE REQUIREMENTS THAT
INVESTIGATORS GET CALLED ON
THOSE AND HAVE TO MODIFY THE
PROTOCOL BEFORE IT GETS
INITIATED.
THE OTHER THING I WANT TO
MENTION WHICH WE'VE MADE GREAT
HEADWAY ON BUT IT ALMOST
EMBARRASSES ME THAT IT TOOK
UNTIL NOW FOR US TO
SYSTEMATICALLY APPROACH THIS IS
THE PROVISION TO PATIENTS AND
FAMILIES OF CONSENT FORMS IN
THEIR NATIVE LANGUAGE.
SOME OF OUR PROTOCOLS ARE
SUFFICIENTLY COMPLEX THAT EVEN
WHEN THEY'RE PROVIDED IN THEIR
NATIVE LANGUAGE, YOU KNOW,
CONSENTING DOESN'T JUST INVOLVE
GIVING THEM A DOCUMENT.
IT INVOLVED A RELATIONSHIP AND A
CONVERSATION AND AN ONGOING
ABILITY TO ASK QUESTIONS AND
MODIFY PARTICIPATION.
AND WE'VE NOW MANDATED THAT
CONSENT FORMS -- AND ACTUALLY
THE NIH LIBRARY HAS BEEN
WONDERFUL IN PROVIDING SERVICES
AND MAKING THEM AVAILABLE TO OUR
INVESTIGATORS.
BUT WE HAVE MANDATED THAT IF A
PATIENT'S NATIVE LANGUAGE IS NOT
ENGLISH, THAT THEY BE OFFERED
THE OPPORTUNITY TO HAVE A
CONSENT FORM PROVIDED IN THEIR
NATIVE LANGUAGE.
AND I DON'T KNOW, THERE'S A LOT
OF TALK ABOUT WHETHER A.I. IS
GOING TO HELP US WITH THAT.
I HAVE -- I DON'T KNOW, I THINK
A HEALTHY BRAND OF SKEPTICISM AS
TO WHETHER I WANT A CONFABULATED
CONSENT FORM FOR MY PATIENTS.
>> MOVING TO THE ELECTRONIC
CONSENT FORMS, WHICH I BELIEVE
THE CLINICAL CENTER IS DOING
NOW, IT SHOULD MAKE THAT EASIER.
>> YES, I THINK THAT'S CORRECT.
>> TONI?
>> HI, DR. HADIGAN.
>> HI.
>> ARE THERE ANY SITUATIONS
WHEREBY YOU ALL RUN INTO
PATIENTS WHOSE LANGUAGE, WHEN
THEY DO COME TO THE CLINICAL
CENTER, YOU CANNOT FIND A PROPER
PERSON TO DO THE TRANSLATING FOR
THEM?
>> THAT'S AN EXCELLENT QUESTION,
AND UNFORTUNA UNFORTUNATE I'M AT
LEAST A FEW INSTANCES WHERE
PRIOR TO BRINGING A PATIENT ON
TO A PROTOCOL, SO AN INDIVIDUAL
WITH A RARE DISEASE WHO LIVED IN
A REMOTE AREA WITH A UNIQUE
DIALECT, AND WE ACTUALLY MADE
THE RECOMMENDATION THAT THE
PATIENT NOT BE BROUGHT TO THE
CLINICAL CENTER BECAUSE WE WOULD
BE UNABLE TO PROVIDE TRANSLATION
SERVICES CONSISTENTLY IN ORDER
TO SUPPORT THE CARE, THIS WAS
PARTICULARLY SOMEONE FOR LIKE A
BONE MARROW STEM CELL TRANSPLANT
WITH A PRIMARY IMMUNODEFICIENCY,
AND THE CONCERN WAS THAT WE
WOULD BE UNABLE TO PROVIDE
THEM CARE AND SUFFICIENT SUPPORT
WITH TRANSLATION SERVICES
BECAUSE THERE WAS JUST NO
ABILITY WITHIN THE SERVICES THAT
WE HAVE UNDER OUR -- AND THAT'S
PRETTY -- THAT'S TELLING, RIGHT,
BECAUSE WE'RE IN THE D.C. AREA
AND WE HAVE A LOT OF ACCESS TO
LANGUAGES OF LESSER DIFFUSION,
SO WE HAVE LIKE 27 LANGUAGES OR
MORE, 30, THAT WE CAN SUPPORT,
BUT THERE ARE DIALECTS THAT WE
CAN'T SUPPORT.
SO THERE ARE TIMES THAT I'M
AWARE OF THAT AND THERE ARE
OTHER TIMES WHERE THERE IS
AVAILABILITY BUT IT'S LIMITED,
AND THAT, I THINK BECOMES A
VULNERABILITY BECAUSE YOU HAVE
TO DO MORE STRATEGIC PLANNING TO
HAVE THE TRANSLATORS AVAILABLE,
THE SIRACOM MAKES UP THE
DIFFERENCE WHEN INDIVIDUAL
PEOPLE CAN'T BE IN, BUT THERE
ARE SITUATIONS IN CLINICAL CARE
WHERE WE NEED THE TRANSLATOR
PRESENT, LIKE WHEN A PATIENT IS
IN AN MR SCANNER AND WE NEED TO
BE COMMUNICATING WITH THEM
THROUGH THE TECHNICIAN SO WE IB
CYST IT NOT BE BY PHONE BUT IN
PERSON, SO WE STILL HAVE
CHALLENGES AND I'M AWARE OF A
FEW INSTANCES WHERE WE'VE HAD TO
RECOMMEND THAT A PATIENT NOT
COME BECAUSE WE COULDN'T PROVIDE
THAT SERVICE.
>> SO WHEN Y'ALL SAY LANGUAGE
INTERPRETATION SERVICES, DO YOU
MEAN PICK UP A PHONE AND Y'ALL
DO THE TRANSLATING THAT WAY OR
YOU MEAN LIKE IN PERSON?
>> SO WE HAVE ALL VERSIONS.
SO WE HAVE IN-PERSON
TRANSLATORS, WE HAVE ABILITY TO
USE A PHONE SERVICE, AND KIND OF
DEPENDING ON THE TIME OF DAY AND
THE PLANNING, WHICH ONES WE USE,
BUT IT BOTH.
IT'S BOTH.
>> THANK YOU.
I DID WANT TO BRING UP A.I. BUT
THAT'S ONE OF THOSE CURSE WORDS,
BUT TWO PEOPLE ALREADY SAID IT
SO -- A.I.
>> SO MY WAY OF MAKING MYSELF
FEEL BETTER ABOUT THAT IS THAT
COMPUTERS HELP US ALL THE TIME
AND HAVE BEEN HELPING US, AND
A.I. IS JUST ANOTHER WAY THAT
COMPUTERS ARE HELPING US.
IT MAKES IT LESS SCARY.
>> OKAY.
THANK YOU VERY MUCH,
DR. HADIGAN.
REALLY APPRECIATE THAT.
OUR NEXT PRESENTATION IS THE
CLINICAL CENTER PEDIATRIC
STRATEGIC PLAN WORKING GROUP
REPORT.
SO WE HAVE DR. DIANA BIANCHI,
WHO'S JOINING US BY ZOOM, AND
DR. BRIGITTE WIDEMANN, WHO'S
HERE IN THE ROOM WITH US.
DR. DIANA BIANCHI IS THE
DIRECTOR OF THE EUNICE KENNEDY
SHRIVER NATIONAL INSTITUTE ON
CHILD HEALTH AND HUMAN
DEVELOPMENT, A POSITION SHE HAS
HELD SINCE 2016.
SHE'S WIDELY RECOGNIZED FOR HER
ACCOMPLISHMENTS AND A PRENATAL
GENETICIST AND WE WELCOME HER ON
ZOOM AS A CO-PRESENTER WITH
DR. WIDEMANN.
TO DISCUSS THE CLINICAL CENTER
PEDIATRIC STRATEGIC PLAN WORKING
GROUP'S REPORT.
DR. BRIGITTE WIDEMANN IS THE
CHIEF CENTER FOR CANCER RESEARCH
PEDIATRIC ONCOLOGY BRANCH AND
SPECIAL ADVISER SO THE NCI
DIRECTOR FOR CHILDHOOD CANCER AT
THE NATIONAL CANCER INSTITUTE.
BRIGITTE IS A WELL-KNOWN
PEDIATRIC ONCOLOGIST WITH A
PRIMARY INTEREST IN DEVELOPING
EFFECTIVE THERAPIES FOR CHILDREN
AND ADULTS WITH GENETIC TEU
PREDISPOSITION SYNDROME SUCH AS
NEUROFIBROMATOSIS TYPE 1 AND
RARE SOLID TUMOR.
SO WE LOOK FORWARD TO THIS
REPORT AS OUR BOARD HAS BEEN
STRONGLY ENGAGED IN DIALOGUE ON
PEDIATRIC CARE AND PEDIATRIC
RESOURCES AT THE CLINICAL
CENTER, SO WELCOME TO YOU BOTH.
>> THANK YOU VERY MUCH.
IT'S A GREAT PLEASURE TO BE WITH
YOU ALL TODAY, AND TO PRESENT
THE WORK REALLY OF THE PATH TWO
YEARS.
SO IF I COULD HAVE THE NEXT
SLIDE, PLEASE.
THIS IS REALLY THE WORK OF MANY
PEOPLE.
WE CREATED A WORKING GROUP THAT
WOULD REPRESENT THE INSTITUTES
THAT HAVE THE LARGEST NUMBER OF
CHILDREN WHO ARE BEING TREATED
IN THE CLINICAL CENTER.
WE WANTED TO GET A WIDE VARIETY
OF PERSPECTIVES, AND WE HAD
DR. TUCCI, DIRECTOR OF THE
NATIONAL INSTITUTE OF DEAFNESS
AND COMMUNICATION DISORDERS AS
WELL AS DR. GILMAN
PARTICIPATING.
AND I HAVE TO SAY, THIS WAS A
VERY ENGAGED GROUP.
WE HAD MANY MEETINGS.
NO ONE WAS SHY IN TERMS OF
COMMUNICATING THEIR OPINIONS.
SO WE THANK THEM FOR THEIR INPUT
AND PARTICIPATION.
NOW OUR GROUP WAS DIFFERENT.
I KNOW THAT YOU'VE PREVIOUSLY
HEARD FROM DR. GALL'S GROUP,
WHICH MAINLY WAS FOCUSED ON
SAFETY AND THE NEED FOR
SUBSPECIALISTS, PEDIATRIC
SUBSPECIALISTS IN THE CLINICAL
CENTER.
OUR GROUP WAS MUCH MORE OF A
BLUE SKY GROUP, REALLY NOT
THINKING NICHE LITTLE ABOUT
COSTS OR PRACTICAL ISSUES BUT
REALLY THINKING ABOUT THE
SCIENCE.
SO OUR WORKING GROUP CHARGE IS
STATED HERE, AND THAT WAS TO
IDENTIFY THE MOST IMPACTFUL
SCIENTIFIC AREAS OF PEDIATRIC
RESEARCH, IN WHICH THE NIH CAN
PLAY A MAJOR ROLE TO
SUBSTANTIALLY IMPROVE CHILD
HEALTH.
WE REALLY WANTED TO THINK ABOUT
THE NIH AS A HOUSE OF HOPE FOR
PEOPLE OF ALL AGES.
AND SO USING THIS HORIZON
SCANNING TO PERFORM LONG TERM
STRATEGIC PLANNING FOR
INTRAMURAL, TRANS-NIH CLINICAL
PEDIATRIC RESEARCH TO OCCUR OVER
THE NEXT DECADE AND BEYOND, AND
WE FELT THAT CHILDREN WERE GOING
TO BE THE BENEFICIARIES OF A LOT
OF THE NEWEST TECHNOLOGIES.
NOW, YOU PROBABLY KNOW THAT
CHILDREN UNDER AGE 3 ARE NOT
GENERALLY ON INPATIENT WARDS IN
THE CLINICAL CENTER, AND WE
COULD CERTAINLY ELABORATE THAT
WITH QUESTIONS LATER ON.
AFTER TWO YEARS OF MEETING, THE
WORKING GROUP CAME UP WITH THE
FOLLOWING SCIENTIFIC PRIORITIES.
AGAIN, WE WERE NOT LIMITED
INITIALLY ABOUT THINKING WHAT IS
THIS GOING TO COST, IS THIS
PRACTICAL, IS THIS FEASIBLE.
SO THIS IS WHAT THE GROUP
THOUGHT WAS THE MOST IMPORTANT
SCIENCE.
SO THE FIRST THING WAS EXPANDING
THE SCOPE OF NATURAL HISTORY
STUDIES TO SUPPORT RESEARCH ON
THE CONTINUUM FROM DIAGNOSIS TO
TREATMENT THROUGHOUT DISEASE
TRAJECTORY.
AND THEN BUILDING A FOUNDATIONAL
CLINICAL AND SCIENTIFIC
INFRASTRUCTURE TO SUPPORT GENE
THERAPY, CAR-T AND OTHER CELL
AND PRECISION THERAPY STUDIES IN
YOUNG CHILDREN WITH INHERITED OR
ACQUIRED RARE, SERIOUS AND
REFRACTORY DISEASES OF UNMET
NEED.
WE ALSO WANTED TO EVALUATE THE
EFFICIENCY OF PRECISION MEDICINE
INTERVENTIONS IN RARE,
NON-MALIGNANT CHILDHOOD
DISEASES, AND THEN INCREASING
THE NUMBER OF PHARMACOKINETIC
AND PHARMACODYNAMIC STUDIES TO
IMPROVE RATIONAL MEDICATION USE
AND PROPER DOSING IN CHILDREN.
BECAUSE WE DON'T HAVE EVIDENCE
FOR MANY MEDICATIONS THAT ARE
GIVEN TO CHILDREN AND WE KNOW
THAT CHILDREN ARE NOT LITTLE
ADULTS.
SO THE REMAINING PRIORITIES ARE
THE FOLLOWING: PERFORMING MED
BMETABOLIC PHENOTYPING ACROSS A
VARIETY OF PEDIATRIC CONDITIONS,
AS WELL AS LINKING METABOLIC
PHENOTYPING ON NUTRITION STUDIES
AND ASSESSING THE IMPACT OF DIET
ON IMMUNE PHENOTYPES AND
METABOLISM.
AND THEN DEVELOPING A COHORT OF
ALL PEDIATRIC PATIENTS AT THE
CLINICAL CENTER TO MEASURE
PHYSICAL AND MENTAL HEALTH AND
DISEASE ACROSS DISORDERS, ALONG
WITH A DEEPLY PHENOTYPED
PEDIATRIC COHORT OF HEALTHY
VOLUNTEER CHILDREN TO ESTABLISH
A STANDARD CONTROL GROUP THAT
CAN BE USED ACROSS STUDIES.
AND THEN LASTLY, BECAUSE THERE
ARE EVEN FEWER PREGNANT PATIENTS
WHO ARE STUDIED IN THE CLINICAL
CENTER, INCREASING SUPPORT FOR
RESEARCH STUDIES IN PREGNANT AND
LACTATING PEOPLE.
SO NOW I WOULD LIKE TO HAND IT
OVER TO MY COLLEAGUE,
DR. WIDEMANN.
>> GOOD MORNING, EVERYBODY.
THANK YOU, DIANA.
THE LAST PART OF THE WORKING
GROUP WAS TO -- IN AREAS OF
INFRASTRUCTURE AND RESOURCES
WITH ESTABLISHMENT OF GRAND
ROUNDS AND A DIRECTORY OF
PEDIATRICIANS.
I BELIEVE THERE ARE 200
PEDIATRICIANS, IS THAT RIGHT,
DR. GILMAN, AT THE NIH CLINICAL
CENTER?
>> 250.
>> IT MORE THAN THAT.
>> SO IT'S A VERY IMPRESSIVE
NUMBER, BUT WE ARE IN A SENSE
ISOLATED AND NOT REALLY ENGAGED.
IT WAS TO CREATE MORE OF A
PEDIATRIC SECTION IN THE IRB, TO
ESTABLISH A CORE FOCUSED ON
PROTOCOL DEVELOPMENT FOR
PEDIATRIC CLINICAL RESEARCH
STUDIES.
A PEDIATRIC NATIONAL HISTORY
CONCIERGE.
WE HAVE MANY, MANY NATURAL
HISTORY STUDIES AT THE NIH
CLINICAL CENTER THAT HAVE REALLY
LED TO GROUNDBREAKING
OBSERVATIONS, BUT FREQUENTLY WE
WORK, AGAIN, IN SILOS AND WE'RE
REINVENTING NATURAL HISTORY
STUDIES BY OURSELVES.
MODULAR CASE REPORT FORMS AND
ESTABLISHMENT OF COMMON DATA
ELEMENTS, MEANING DATA ELEMENTS
WE USE ACROSS DISEASES AND
ACROSS INSTITUTES.
IT'S SOMETHING WE ARE WORKING ON
AT THE NCI WITH THE CHILDHOOD
CANCER DATA INITIATIVE AND COULD
BE A RESOURCE FOR OTHER PROJECTS
AS WELL.
AND THEN FINALLY, PEDIATRIC
FRIENDLY IMAGING RESOURCES AND
ENVIRONMENT FOR VERY YOUNG KIDS.
THERE IS A LOT THAT WOULD NEED
TO BE DONE AT THE NIH.
AND THEN ULTIMATELY DATA
MANAGEMENT AND DATA SHARING
WHICH, AGAIN, IS A BIG EFFORT OF
NCI CHILDHOOD CANCER DATA
INITIATIVE AND COULD BENEFIT
OTHER INSTITUTES.
WHAT I'M DOING NOW IS TO BRIEFLY
SUMMARIZE THE RECOMMENDATIONS
THAT DR. BIANCHI AND I JUST
PRESENTED BY LOOKING AT HOW
COULD WE GET TO THE REALIZATION
OF THESE PRIORITIES BY LOOKING
AT WHAT HAS MINIMAL, LOW TO
MODERATE, AND VERY HIGH
FINANCIAL INVESTMENT.
SO MINIMAL INVESTMENT WOULD BE
TO INDEED EXPAND THE PEDIATRIC
IRB SECTION SO THAT WE CAN
STREAMLINE THE DEVELOPMENT OF
PROTOCOLS, RESEARCH STUDIES FOR
VERY YOUNG CHILDREN, TO DEVELOP
A DIRECTORY OF CLINICAL CENTER
PEDIATRIC RESEARCHERS, AND TO
ESTABLISH GRAND RO GRAND ROUNDSD
ON CHILD HEALTH WHICH WOULD NOT
ONLY ENGAGE US BUT I THINK ALSO
ACCELERATE SCIENCE AND
COLLABORATIONS.
LOW TO MODERATE FINANCIAL
INVESTMENT WOULD BE TO SUPPORT
PEDIATRIC PHARMACOKINETIC AND
PHARMACODYNAMIC STUDIES,
LACTATION STUDIES AS DR. BIANCHI
ALLUDED TO, AND INFANT AND
PEDIATRIC METABOLIC STUDIES.
YOU WILL HEAR FROM JENNIE LUCCA
FROM THE CHILDREN'S INN, WE
ACTUALLY MET WITH HER AS PART OF
OUR WORKING GROUP, AND WE'RE
THRILLED TO HEAR THAT THE
CHILDREN'S INN WILL HOPEFULLY
ACTUALLY FACILITATE THE
POTENTIAL REALIZATION OF THESE
GOALS.
OTHER AREAS WOULD BE INCLUDING
PHENOTYPING OF PEDIATRIC
ALL-OF-US PARTICIPANTS THAT HAVE
SPECIFIC GENOMIC VARIANTS,
DEVELOPMENT OF THE PROTOCOL AND
CLINICAL RESEARCH INFRASTRUCTURE
AS IT RELATES TO PROTOCOL
DEVELOPMENT, DEVELOPING OF
COMMON DATA ELEMENTS, IMAGING
AND SCANNING, AND AS I ALREADY
MENTIONED, THE NATURAL HISTORY
STUDY CONCIERGE, A PERSON TO GO
TO IF I WAS TO DEVELOP A NEW
NATURAL HISTORY STUDY, WHO COULD
HELP ME GET IT DEVELOPED QUICKLY
AND HOPEFULLY CONSISTENT WITH
OTHER STUDIES IN THE DATA
COLLECTION.
AND THEN THE MAJOR FINANCIAL
INVESTMENT WOULD BE TO ESTABLISH
THE CLINICAL INFRASTRUCTURE TO
SUPPORT THE HIGHLY INNOVATIVE
THERAPIES THAT ARE BEING
DEVELOPED FOR ADULT PATIENTS AT
THE NIH CLINICAL CENTER, IN PART
FOR CHILDREN BUT DEFINITELY NOT
FOR VERY YOUNG CHILDREN
CURRENTLY, WHICH WOULD PROVIDE
POTENTIALLY GROUNDBREAKING
ADVANCE AS IT RELATES TO GENE
THERAPY, CELLULAR THERAPY, AND
OTHER PRECISION THERAPIES
INCLUDING SMALL MOLECULES.
AS DR. BIANCHI SAID, THE HOUSE
OF HOPE FOR PATIENTS OF ALL
AGES, AND I DON'T KNOW,
DR. BIANCHI, IF YOU WOULD LIKE
TO QUICKLY MENTION THE
APPLICATION TO COMMON FUND
RESOURCES TO ESTABLISH THIS.
>> SURE, THANK YOU, BRIGITTE.
YOU KNOW, WE PRESENTED THIS TO
OUR COLLEAGUES ON THE CLINICAL
CENTER GOVERNING BOARD, AND THEY
WERE LARGELY ENTHUSIASTIC EXCEPT
THEY WANTED TO KNOW WHAT THIS
WOULD COST THEM, AND WHETHER IT
WOULD INCREASE THE SO-CALLED
SCHOOL TAX THAT EACH INSTITUTE
RECEIVES TO HELP SUPPORT THE
CLINICAL CENTER.
AND WE TOLD THEM THAT WE WERE
COMMITTED TO NOT RAISING THE
SCHOOL TAX, BUT WE WOULD
APPROACH OTHER PLACES TO SEE IF
THERE WAS INTEREST IN FUNDING,
AND EVERY YEAR THERE IS AN
OPPORTUNITY TO APPLY FOR FUNDING
FROM SOMETHING CALLED THE COMMON
FUND, WHICH TYPICALLY THE
DIRECTOR OF THE NIH HAS MADE A
DECISION ABOUT BUT
DR. BERTAGNOLLI HAS MADE THIS
MUCH MORE EGALITARIAN, SHE HAS
SAID IT HER INTENT THAT SHE HEAR
FROM US, SO WE PRESENTED MORE OR
LESS THE SAME THING TO YOU'RE
COLLEAGUES.
THERE WERE 10 DIFFERENT
APPLICATIONS TO THE COMMON FUND.
WE WERE ONE OF THEM.
WE MADE THE FIRST CUT INTO THE
TOP SIX, AND THEN OF THE TOP
SIX, WE WERE NUMBER TWO IN TERMS
OF PRIORITY.
SO I THINK THAT'S GREAT.
IT SHOWS BROAD SUPPORT ACROSS
THE ICs BUT DID NOT RESULT IN
ANY MONEY UNLESS WE SOMEHOW GET
A BUDGET THAT'S HIGHER THAN WE
EXPECT, WHICH IS UNLIKELY.
BUT WE WILL CONTINUE -- WE WILL
CERTAINLY REAPPLY, AND WE WILL
CONTINUE TO EXPLORE OTHER
OPPORTUNITIES BECAUSE MANY OF
THESE THERAPIES, UNLESS YOU
PROVIDE THEM IN THE FIRST FEW
MONTHS OF LIFE, THESE CHILDREN
WILL SUFFER DEVASTATING
CONSEQUENCES FROM INHERITED
DISORDERS.
AND THERE'S A REAL EQUITY ISSUE
HERE TOO, NOT JUST BECAUSE SOME
OF THESE THERAPIES ARE
INCREDIBLY EXPENSIVE FOR THE
FAMILIES, BUT ALSO NOT EVERY
CHILDREN'S UNIT OR CHILDREN'S
HOSPITAL AROUND THE COUNTRY HAS
THE EXPERTISE OR RESOURCES TO
PROVIDE SUCH THERAPY.
SO THIS REALLY WOULD BE
TRANSFORMATIVE FOR THE NIH.
AND WE'RE VERY COMMITTED TO
CONTINUE TRYING TO GET SUPPORT.
>> THANK YOU, DIANA.
WHAT I WOULD LIKE TO ADD, AND I
KNOW WE TALKED WITH DR. GILMAN
ABOUT THIS, IF WE CAN TREAT SICK
PATIENTS THAT ARE VERY YOUNG, WE
CAN TREAT AND SEE VERY YOUNG
PEDIATRIC PATIENTS, FOR EXAMPLE,
ON NATURAL HISTORY STUDIES,
WHICH IS STILL SOMEWHAT LIMITED
AND WOULD GREATLY, I BELIEVE,
ACCELERATE THE LEARNING, BECAUSE
MANY OF THE CONDITIONS MANIFEST
AT VERY YOUNG AGE.
THE OTHER TWO MORE FINANCIAL
INVESTMENT REQUIRES PRIORITIES
WOULD BE THE DEEP PHENOTYPING OF
PEDIATRIC SPECIFIC HEALTHY
COHORT, AND TO DEVELOP
POTENTIALLY A COHORT STUDY
ACROSS ALL CLINICAL CENTER
PEDIATRIC PATIENTS.
I BELIEVE THIS IS THE LAST
SLIDE, AND WE'D BE HAPPY TO TAKE
QUESTIONS.
THANK YOU.
>> DAVID.
>> THAT WAS A TERRIFIC
PRESENTATION, AND IT SOUNDS LIKE
A VERY POWERFUL POTENTIAL
INITIATIVE, ASSUMING YOU GET
FUNDS FOR IT.
THAT RELATES TO MY QUESTION.
AS A NEW BOARD MEMBER, I'M NOT
FAMILIAR WITH THE TERM OF ART
"SCHOOL TAX."
COULD YOU EDUCATE ME ON HOW MUCH
MONEY WE'RE TALKING ABOUT AND A
EXACTLY WHAT DOES DO?
>> DR. GILMAN WILL TAKE THIS.
>> SO THE CLINICAL CENTER DOES
NOT GET A DIRECT APPROPRIATION
FROM THE CONGRESS, AS THE OTHER
INSTITUTES AND CENTERS AT THE
NIH RECEIVE.
SO FOR THE FIRST ALMOST 40 YEARS
OF ITS EXISTENCE, THE CLINICAL
CENTER WAS FUNDED BY BASICALLY
USER FEES.
AND FOR THE LAST 23, 24 YEARS,
THE FUNDING HAS -- AND USER FEES
BEGAN TO FAIL, BECAUSE IC IC
DIRECTORS TOO OFTEN FACED THE
COMPETITION BETWEEN DO I -- I'VE
GOT THIS VERY EXCELLENT
INVESTIGATOR WHO'S DOING GREAT
WORK AND THAT INVESTIGATOR WANTS
ANOTHER POSTDOC, OR DO I
PARTICIPATE IN THIS CLINICAL
RESEARCH TRIAL, WHICH IS GOING
TO BEAR FRUIT MORE SLOWLY, AND
THE YOUNG POSTDOC OR THE YOUNG
INVESTIGATOR IS, YOU KNOW,
WORKING ON A TENURE CLOCK, AND
SO ANYWAY, THAT TRADEOFF
EVENTUALLY RESULTED IN THE
FAILURE OF SORT OF THE USAGE
FEE.
SO FOR THE LAST 23, 24 YEARS,
THE CLINICAL CENTER BUDGET IS
APPROVED BY THE CLINICAL CENTER
GOVERNING BOARD, BUT IT IS THEN
DIVIDED ACCORDING TO A FORMULA
THAT'S CALLED THE SCHOOL TAX.
AND THE SCHOOL TAX HAS COME TO
EAT AN INCREASINGLY IMPORTANT
PORTION OF THOSE APPROPRIATIONS.
KEEP IN MIND THAT ONLY ABOUT
11 -- SOMEPLACE BETWEEN 11 AND
15% OF THE CONGRESSIONAL
APPROPRIATIONS STAY INSIDE THE
NIH, AND THAT IS WATCHED VERY,
VERY CAREFULLY.
AND SO OF THAT PORTION THAT
STAYS INSIDE THE NIH, THE SCHOOL
TAX IS A MAJOR DRAW.
SO A LOT OF DISCUSSIONS ABOUT
ALL KINDS OF THINGS RELATED TO
MONEY, AS TIGHT BUDGETS ARE
OFTEN THE CATALYST FOR CREATIVE
THINKING AND LOOKING VERY
CAREFULLY ABOUT WHAT YOU'RE
SPENDING THE MONEY ON.
SO THAT'S -- BUT THAT'S THE
SCHOOL TAX.
INSTITUTES PAY A PERCENTAGE
THAT'S BASED ON THEIR
APPROPRIATION AND THE SIZE OF
THEIR INTRAMURAL RESEARCH
PROGRAM.
>> DR. DEVASKAR.
>> THANK YOU.
I FIRST OF ALL WANT TO THANK DRR
THE TREMENDOUS AMOUNT OF WORK
THAT MUST HAVE GONE INTO THIS
OVER THE LAST TWO YEARS.
TO ENSURE THAT WE OVERCOME THE
AGE INEQUITY, AS WAS STATED.
I JUST WANTED TO BRING UP JUST
TWO ISSUES.
ONE WAS IMAGING IS VERY
IMPORTANT WITH THE PHENOTYPING
THAT YOU'VE STATED.
SO YOU WANT TO BE SURE IN
CERTAIN CASES THAT INFANT
SEDATION ABILITIES ARE AVAILABLE
AT CCRH.
AND I'M SURE YOU'VE THOUGHT
ABOUT IT.
I JUST DIDN'T SEE IT IN YOUR
SLIDES.
SO I JUST WANT TO -- NOT EVERY
CHILD, BECAUSE I THINK THERE IS
A LOT OF VIDEO WATCHING THAT
NOWADAYS MANY PLACES USE FOR
IMAGING, BUT THERE ARE INFANTS
WHO DESPITE SWADDLING WILL NEED
SEDATION.
AND SOMETIMES INTUBATION.
SO I JUST WANT TO BE SURE THAT
THAT CAPABILITY -- AGAIN TALKING
ALONG THE LINES OF SAFETY, OF
COURSE, EXIST AND THAT YOU HAVE
IT IN YOUR PROTOCOLS OR YOUR ASK
IN YOUR BUDGETS.
SO THAT'S JUST ONE MAJOR THING.
AND THE OTHER THING IS I AGREE
WITH DR. BIANCHI AND
DR. WIDEMANN THAT THE EARLIER WE
INSTITUTE INTERVENTIONS, THE
BETTER THE OUTCOMES, BUT ALSO
IT'S A LIFE COURSE CHANGE, A
DRAMATIC CHANGE THAT CAN HAPPEN,
AS WE'VE SEEN WITH CERTAIN
NEUROMUSCULAR DISORDERS AND
OTHER GENE THERAPIES THAT ARE
COMING TO PASS.
IT'S THE CELLULAR THERAPY WHERE
A CHILD CAN GO DOWN THE TUBES
VERY FAST, AS YOU ALL KNOW,
DEPENDING, AND WE'VE SEEN IT AT
MANY CENTERS, AND THIS IS WHY, I
THINK, DR. GILMAN HAD PUT
TOGETHER AN EXTERNAL COMMITTEE
FOR CONSIDERING OF PICU AND
STABILIZATION AND I THINK IT HAD
MAINLY TO DO WITH THE CELLULAR
THERAPY INTERVENTION THAT
CREATED SOME ANGST WITH THE
SAFETY ASPECT.
SO THOSE ARE THE ONLY ISSUES
THAT I WAS GOING TO RAISE, BUT I
WANT TO THANK YOU ALL FOR TAKING
THIS SO MUCH FURTHER THAN IT W
WAS.
>>
>> CAN I ANSWER?
>> SURE.
>> PLEASE.
>> SO THANK YOU, DR. DEVASKAR,
FOR YOUR COMMENTS.
I LIKE THE TERM "AGE INEQUITY."
I WROTE IT DOWN BECAUSE I THINK
THAT'S PART OF OUR OVERALL
CONSIDERATION OF INEQUITIES.
I DIDN'T GET SPECIFIC INTO WHAT
WE ASKED THE COMMON FUND FOR,
BUT WE ASKED THEM FOR FUNDS FOR
TWO THINGS.
ONE WAS TO ESTABLISH A SMALL
PEDIATRIC I KRMECU AT THE CLINIL
CENTER THAT WOULD BE CAPABLE OF
TAKING CARE OF YOUNG CHILDREN,
AND THE SECOND THING WAS TO
ESSENTIALLY ESTABLISH A CONTRACT
WITH A LOCAL INSTITUTION WITH
THE EXPERTISE TO CARE FOR
CHILDREN WHO BECAME CRITICALLY
ILL AS A RESULT OF THE THERAPY
THAT WE WERE PROVIDING.
SO IT WOULD PROBABLY MEAN A
TRANSFER.
BUT THAT MONEY WOULD PAY FOR THE
MEDICAL COSTS ASSOCIATED WITH
THAT.
AND I BELIEVE THAT PART OF
DR. GALL'S -- CORRECT ME IF I'M
WRONG, BUT I THINK PART OF
DR. GAL L'S RECOMMENDATIONS THAT
WERE IMPLEMENTED INCLUDED BETTER
COVERAGE WITH PEDIATRIC
ANESTHESIA.
SO THAT MIGHT BE ABLE TO ADDRESS
THE IMAGING ISSUE THAT YOU
RAISED.
>> THANK YOU FOR THAT.
DR. BIANCHI.
>> SO THE PEDIATRIC ANESTHESIA,
WE ACTUALLY DO PRETTY WELL
THERE.
AND WHILE WE HAVE AGE
LIMITATIONS ON OUR INPATIENT
PEDIATRICS WARD, WE DO TAKE CARE
OF YOUNGER CHILDREN AND SMALLER
CHILDREN AS OUTPATIENTS, AND
WITH THE UNDIAGNOSED DISEASES
PROGRAM AND OTHER PROGRAMS, WE
DO IMAGE YOUNG CHILDREN, WE
HAVE -- MY LAST INFORMATION WAS
AT LEAST THREE ANESTHESIOLOGISTS
TRAINED IN PEDIATRIC
ANESTHESIOLOGISTS.
I'LL LEAVE IT AT THAT.
EVEN BEFORE -- OR AT ABOUT THE
SAME TIME THAT DR. GALL FINISHED
HIS WORK IN THE REPORT, AND THAT
WAS PRESENTED HERE I THINK ABOUT
A YEAR AGO, WE HAD -- WE ALREADY
HAD KRRTED WITH THE
INTENSIVISTS, PEDIATRIC ICU --
PEDIATRIC INTENTVISTS FROM
CHILDREN'S NATIONAL HOSPITAL TO
BE ON SITE A MUCH GREATER PERIOD
OF TIME.
WE STILL HAVE SOME LIMITATIONS,
WE STILL HAVE THE LIMITATIONS ON
THE INPATIENT SIDE.
WE'RE ACTIVELY LOOKING AT
RELAXING THAT A LITTLE BIT IN
GOING FROM 3 YEARS OLD DOWN TO
2, WE THINK THAT'S NOT TOO MUCH
OF A LEAP FOR US, BUT IT WILL BE
HARD TO GO MUCH LOWER UNLESS WE
GET AN INFUSION OF CAPITAL TO
PROVIDE THE ADDITIONAL SUPPORT
THAT WE NEED.
SO THAT'S KIND OF WHERE IT IS.
DR. BIANCHI DID ACTUALLY TAKE
THE WORK OF THIS -- OF THE
WORKING GROUP TO THE PEDIATRIC
CHAIRS THAT I THINK AMSPIDAC,
DID I GET THAT RIGHT?
>> YES.
>> THEY'VE HAD SOME INPUT INTO
WHAT THEY WOULD LIKE TO SEE THE
CLINICAL CENTER BE ABLE T TO DOS
WELL.
THANKS.
>> THANK YOU, DR. GILMAN.
>> YES, STEPHANIE.
>> FORGIVE MY IGNORANCE.
WHAT IS MEANT BY THE TERM
NATURAL HISTORY STUDY?
SORRY FOR NOT KNOWING.
>> MAYBE I'LL TAKE THIS ONE.
IT MEANS AN OBSERVATIONAL STUDY
WHERE THERE IS NO INTERVENTION
AS THE PRIMARY OBJECTIVE.
WE CAN FOLLOW PATIENTS THAT ARE
RECEIVING TREATMENT AS PART OF
THEIR CLINICAL CARE AND SEE WHAT
THE IMPACT IS, BUT IT WOULD NOT
BE A PRIMARY INTERVENTION STUDY.
SO FOR EXAMPLE, IN MY PATIENTS
WITH NEUROFIBROMATOSIS TYPE I
WHEN NO CLINICAL TRIALS WERE
AVAILABLE, I STARTED A NATURAL
HISTORY STUDY, WE MONITORED
LONGITUDINALLY THE TUMOR GROWTH,
THE PATIENT-REPORTED OUTCOMES,
THEIR IQ, AND MANY OTHER
FACTORS, AND WE ALSO MONITORED
THE TREATMENTS THAT THEY WERE
RECEIVING.
AND THIS IS THEN IN CONTRAST TO
INTERVENTIONAL CLINICAL TRIALS
WHERE WE USE A BEHAVIORAL OR
MEDICAL OR OTHER TYPES OF
INTERVENTIONS WHERE WE FOLLOW
THE OUTCOMES.
>> THANKS.
>> AND I WOULD SAY THE NIH
REALLY IS ONE OF THE BEST PLACES
TO CONDUCT NATURAL HISTORY
STUDIES BECAUSE OF THE RESOURCES
THAT WE HAVE AND WHENEVER I
WOULD TALK TO MY OUTSIDE
COLLEAGUES, THEY WOULD SAY THIS
IS MY DREAM STUDY, BUT I CAN'T
PARTICIPATE BECAUSE I DON'T HAVE
THE FUNDING.
SO BEING ABLE TO EXTEND THE AGE
TO LOWER AGE WOULD ACTUALLY BE
VERY IMPACTFUL ALREADY.
>> THANK YOU VERY MUCH,
DR. BIANCHI AND WIDEMANN.
THAT WAS REALLY VERY HELPFUL.
DO HAVE A QUESTION,
DR. WIDEMANN, YOU SPOKE ABOUT
RESOURCES AND INFRASTRUCTURE,
AND WITH REGARD TO THINGS LIKE
THE CELLULAR THERAPEUTICS AND
CAR-T, IS THERE ANY OPPORTUNITY,
AND THIS MAY BE COMPLETELY
WRONG, BUT IS THERE ANY
OPPORTUNITY TO SHARE ANY OF
THOSE RESOURCES OR
INFRASTRUCTURE WITH THE ADULT
CELLULAR THERAPEUTICS OR CAR-T,
AND COULD THAT HELP FROM A COST
PERSPECTIVE?
>> YOUR QUESTION WAS THE
COLLABORATION WITH ADULT -- FOR
ADULT CAR-T?
>> YES.
>> ABSOLUTELY.
WHEN THE TARGET IS PRESENT IN
THE PEDIATRIC TUMOR AND THE
ADULT TUMOR, I COMPLETELY AGREE,
YOU WOULD WANT TO STUDY IT IN
PEDIATRICS AND IN ADULTS.
THERE ARE TUMORS WHERE THERE IS
NO COMMONALITY WHERE WE WILL GO
AFTER TARGETS THAT WE DON'T SEE
IN ADULT TE TUMORS.
AGAIN THAT IS ONE OF THE GREAT
ADVANTAGE, I THINK, AT THE NIH
CLINICAL CENTER, THAT WE HAVE
OUR ADULT COLLEAGUES WHO WORK IN
CELLULAR THERAPY AND IF THEY
IDENTIFY A TARGET THAT IS
RELEVANT TO PEDIATRIC TUMORS,
THAT WOULD FACILITATE AND
DECREASE THE COST POTENTIALLY
FOR STUDIES.
>> JACK?
>> THANKS VERY MUCH FOR THAT
REALLY COMPELLING REPORT.
MY QUESTION REALLY GOES MORE TO
SCOPE.
WHAT IS THE AMOUNT YOU'RE
LOOKING FOR FROM THE COMMON
FUND, WHAT ARE THE COSTS
ASSOCIATED WITH THIS?
>> WE ASKED FOR $12 MILLION.
>> THAT'S PER YEAR.
>> DR. DEVASKAR.
>> THANK YOU AGAIN.
I JUST WANTED TO SAY THAT THE
PHENOTYPING OF NORMAL CHILDREN
TO SERVE AS CONTROLS WILL NOT
JUST BENEFIT THE INTRAMURAL
PROGRAM, BUT WOULD BE SUCH AN
IMPORTANT RESOURCE FOR
EXTRAMURAL AS WELL.
AND THE REASON I STATE THAT IS
IT'S VERY, VERY DIFFICULT TO GET
NORMAL CHILDREN PHENOTYPED AS A
CONTROL POPULATION FOR ANY
STUDIES THAT ARE ONGOING.
SO I DO WANT TO HIGHLIGHT HOW
IMPORTANT THAT ASPECT IS.
THAT ONLY THE NIH PERHAPS CAN
TAKE IN LARGE NUMBERS AT THE
CURRENT TIME.
AND REGARDING AMOUNT THAT
DR. BIANCHI QUOTED, I MEAN,
THAT'S WHAT IT WOULD TAKE FOR
CHILDREN, AND TO DO IT RIGHT.
SO THANK YOU FOR SHARING THAT
AMOUNT WITH US.
>> THANK YOUMENT
>> AND I WOULD LIKE TO GO BACK
TO WHICH WE WENT OVER QUICKLY
THE FACT THAT WE HAVE 250
CREDENTIALED PEDIATRICIANS AT
THE CLINICAL CENTER.
WE WERE ALL ASTONISHED WHEN WE
FOUND THAT OUT.
THAT IS SIGNIFICANTLY LARGER
THAN MANY ACADEMIC PEDIATRIC
DEPARTMENTS IN THE COUNTRY.
SO AGAIN, UNDER THE MINIMAL
COST, WE THINK THAT WE CAN
ALREADY MOVE FORWARD WITH
ACTIVITIES THAT WILL ENHANCE THE
APPRECIATION OF CHILD HEALTH
RESEARCH AT THE CLINICAL CENTER,
PARTICULARLY ON CAMPUS AT THE
NIH, AND THIS IS COMING AT A
TIME WHERE THE CHILDREN'S INN IS
PLANNING AN EXPANSION, WHICH
YOU'RE GOING TO HEAR ABOUT
SHORTLY.
SO IT'S LIKE ALL THESE THINGS
ARE COMING TOGETHER TET, AND WE
DO HAVE AN OPPORTUNITY,
PARTICULARLY IN LIGHT OF THE
ADVANCES IN SCIENCE THAT ARE
BEING MADE.
>> DR. DEVASKAR, I WANTED YOU TO
KNOW THE ANNOUNCEMENT OF THE
OPENINGS FOR CHILD LIFE
SPECIALISTS HIT STREET FOR THE
NIH CLINICAL CENTER WITHIN THE
PAST WEEK.
WE ARE -- WITHOUT ADDITIONAL
RESOURCES, THERE ARE STILL A FEW
THINGS WE CAN CERTAINLY AFFORD
DO IN AND HIRING SOME CHILD LIFE
SPECIALISTS IS ONE OF THE ONES.
WE DID LISTEN WHEN YOU AND YOUR
GROUP CAME BY.
THANKS.
>> THANK YOU, DR. GILMAN.
>> DAVID, GO AHEAD.
>> THANK YOU.
THIS IS IN FURTHERING MY
EDUCATION ABOUT THE CLINICAL
CENTER.
SO WHEN I HEARD THE ANSWERS, IT
SEEMED LIKE THAT THE SCHOOL TAX
WAS LIKE FOR OPERATING FUNDS AND
THEN I ASSUME THE COMMON FUND
WAS SOMETHING LIKE A FUND THAT
YOU COULD START INITIATIVES AT
THE DISCRETION OF NIH, BEN THEN
WHEN YOU SAIDTHEN -- BUT THEN WD
IT'S A $12 MILLION ASK FOR
OPERATING FUNDS I BECAME A
LITTLE CONFUSED.
WOULD THAT GET FOLDED INTO A
SCHOOL TAX OR NOT?
>> SO COMMON FUND WOULD BE NEW
MONEY TO FUND SOMETHING THAT YOU
WEREN'T FUNDING BEFORE, OKAY?
BUT THE COMMON FUND ENDS AFTER A
FEW YEARS.
AND IT'S A LIMITED YEAR FUNDING.
THE IDEA IS YOU HAVE TO HAVE THE
VENTURE CAPITAL, BUT THIS THING
HAS TO GROW ITS OWN LEGS, AND BE
SUPPORTED BY THE INSTITUTES AND
CENTERS WHO ARE INTERESTED IN
THIS RESEARCH.
DOES THAT HELP?
>> OKAY.
ARE THERE ANY OTHER QUESTIONS?
IF NOT, DR. BIANCHI AND
DR. WIDEMANN, THANK YOU SO VERY
MUCH.
REALLY APPRECIATE IT.
REALLY GREAT PRESENTATION TODAY,
STIMULATED A LOT OF THOUGHT.
>> THANK YOU.
>> WE ARE A LITTLE BIT AHEAD OF
SCHEDULE SO WE'RE SCHEDULED TO
TAKE A BREAK AT 11:30 WITH THE
NEXT BRIEFING AT 11:45.
WHY DON'T WE GO AHEAD AND TAKE
BREAK NOW AND RECONVENE AT
11:30, AND IF WE CAN GET JENNIE
LUCCA HERE -- OKAY, GREAT.
SO WE'RE ON BREAK.
THANK YOU.
JENNIE HAS A WONDERFUL
PRESENTATION TO SHARE INFORMING
US ABOUT WHAT THE INN DOES, HOW
IT PARTNERS WITH THE CLINICAL
CENTER PATIENTS AND THEIR
FAMILIES, THE SERVICES THE INN
PROVIDES ALONG WITH A LOOK AHEAD
AT WHAT THE INN IS GOING TO LOOK
LIKE TOMORROW.
SO JENNIE, TAKE IT AWAY.
>> THANK YOU VERY MUCH FOR
HAVING ME.
GOOD MORNING TO EVERYONE IN THE
ROOM AND ON ZOOM.
THANK YOU FOR GIVING ME THE
OPPORTUNITY TO TELL YOU ABOUT
THE CHILDREN'S INN AND OUR PLANS
TO DO MORE TO SUPPORT THE
IMPORTANT WORK BEING DONE HERE
AT THE NIH CLINICAL CENTER.
THE CHILDREN'S INN IS ONE OF
FIVE NON-PROFIT PARTNERS TO THE
NIH LOCATED ON THIS CAMPUS.
HOPEFULLY YOU HAVE SEEN THE INN,
YOU'VE DRIVEN BY IT ON CAMPUS,
AND IF YOU HAVEN'T CONSIDER THIS
YOUR PERSONAL INVITATION TO COME
SEE US AND I'D BE HAPPY TO
PROVIDE WITH YOU A TOUR.
WHAT YOU SEE ON THIS FIRST SLIDE
IS ACTUALLY THE CURRENT 65%
RENDERING OF THE INN OF TOMORROW
AND I'LL TELL YOU A LITTLE BIT
MORE ABOUT THAT LATER IN THE
PRESENTATION.
SO WHO ARE WE, WHAT DO WE DO AND
WHY DO WE DO IT?
AS I MENTIONED, WE'RE ONE OF
FIVE NON-PROFIT PARTNERS TO THE
HIV.
OUR ROLE IS TO PROVIDE LODGING
AND SUPPORT SERVICES FOR
CHILDREN, TEEN AND YOUNG ADULTS
AND THEIR FAMILIES WHO TRAVEL
FROM ALL AROUND THE WORLD TO
PARTICIPATE IN CLINICAL RESEARCH
STUDIES RIGHT HERE AT THE NIH
CLINICAL CENTER.
SO THAT'S CONSIDERED INTRAMURAL
RESEARCH.
THE VISION FOR THE CHILDREN'S
INN WAS IN THE 1980s, WHEN
BRIGITTE'S PREDECESSOR, DR. PHIL
PIZZO, CHIEF OF THE PEDIATRIC
ONCOLOGY BRANCH AT THE TIME SAW
PARENTS TALKING WITH OTHER
FAMILIES IN THE WAITING ROOMS
BUILDING SUPPORT NETWORKS NOT
WANTING TO GO BACK TO HOTELS,
EATING OUT OF VENDING MACHINES
AND EVEN SLEEPING IN THE WAITING
ROOMS AND THOUGHT, WOW, WOULDN'T
IT BE GREAT TO HAVE A PLACE
WHERE FAMILIES COULD STAY
TOGETHER, WHICH WOULD ALSO HELP
CLINICAL RESEARCHERS COMPLETE
THEIR WORKS A WELL.
THE NIH DONATED 2 1/2 ACRES OF
LAND.
MERCK DONATED THE INITIAL
3-POINT # MILLION DOLLARS TO
BUILD THE END AND SPOUSES AND
MEMBERS OF CONGRESS RAISED THE
INITIAL FUNDS TO OPEN THE
CHILDREN'S IN.
WE OPENED THE DOORS IN 1990 AND
WE REPRESENT A VERY SUCCESSFUL
UNIQUE PUBLIC-PRIVATE
PARTNERSHIP IN THAT WE ARE
LOCATED ON A FEDERALLY FUNDED
CAMPUS BUT WE ARE A NON-PROFIT
ORGANIZATION RESPONSIBLE FOR
RAISING OUR $12 MILLION ANNUAL
BUDGET WHICH IS PRIMARILY FUNDED
THROUGH PRIVATE PHILANTHROPY.
SO EVERYTHING WE DO AT THE INN
STRIVES TO REDUCE THE MANY
BURDENS THAT IMPACT A FAMILY
WITH A SICK FAMILY MEMBER,
ESPECIALLY A CHILD, GIVE KIDS
THE OPPORTUNITY TO HAVE SOME
NORMAL CHILDHOOD EXPERIENCES AND
CHILDHOOD AND OF COURSE HELP
ADVANCE THE MEDICAL RESEARCH
MISSION OF THE NIH.
THE WAY WE SUPPORT FAMILIES
COMES IN MANY FORMS FROM SPECIAL
TECHNOLOGY DOLLARS TO SUPPORT
KIDS WHO MIGHT BE ON ISOLATION,
TELEHEALTH CAPABILITIES.
WE DELIVER OVER A THOUSAND
RECREATIONAL EDUCATIONAL AND
THERAPEUTIC PROGRAMS TO KEEP
FAMILIES STRONG, AND OF COURSE
WE PROVIDE FAMILIES WITH THE
OPPORTUNITY TO BE PART OF A
COMMUNITY THAT UNDERSTANDS WHAT
THEY'RE GOING THROUGH.
SO WHETHER A CHILD IS VISITING
US ONE TIME OR MANY TIMES, IT
MIGHT BE THE ONLY TIME THEY MEET
ANOTHER CHILD WHO SHARES THEIR
SAME RARE DIAGNOSIS OR THE ONLY
TIME A FAMILY HAS THE
OPPORTUNITY TO TALK TO ANOTHER
FAMILY WHO UNDERSTANDS EXACTLY
WHAT THEY'RE GOING THROUGH
BECAUSE THEY'RE GOING THROUGH IT
TOO.
WE CERTAINLY DO NOT DO OUR WORK
ALONE.
WE'RE VERY LUCKY TO HAVE A VERY
STRONG COMMUNITY THAT SURROUNDS
US FROM 45 STAFF MEMBERS TO 200
VOLUNTEERS, MANY OF THOSE ARE
NIHERS, TO A SOLID CADRE OF
INDIVIDUALS AND CORPORATIONS WHO
LEND THEIR ADVICE, THEIR TIME
AND THEIR RESOURCES TO HELP US
ACHIEVE OUR MISSION.
THIS IS ZILLY.
SHE IS OUR RESIDENT THERAPY DOG.
SHE DESERVED HER OWN SLIDE
BECAUSE OF HOW IMPORTANT SHE IS
TO US AND EVERYBODY HERE ON
CAMPUS.
IF YOU LOOKED AT OUR LEADERSHIP
TEAM PAGE ON THE WEBSITE, SHE'S
PERMLY LISTED AS THE CHIEF
EMOTIONAL SUPPORT AND ENGAGEMENT
OFFICER.
SHE NOT ONLY SUPPORTS KIDS AT
THE INN BUT DOES MAKE TRIPS TO
THE CLINICAL CENTER AS WELL.
HERE YOU CAN SEE DR. GILMAN
PARTICIPATING IN ONE OF HER
BIRTHDAY PARTIES WHICH ACTUALLY
JUST HAPPENED YESTERDAY, SHE
TURNED 10 YESTERDAY.
SHE'S A WONDERFUL, WONDERFUL
PART OF WHAT WE DO AND WE DO
HAVE A LOT OF ANIMAL THERAPIES,
WE DO KNOW HOW IMPORTANT ANIMALS
ARE TO HEALING.
SO THE NIH RELIES ON US TO
PROVIDE A SUPPORTIVE
INFRASTRUCTURE FOR FAMILIES TO
PARTICIPATE IN IN CLINICAL
RESEARCH.
WE CURRENTLY CAN SUPPORT 60
FAMILIES THEY CHILDREN'S INN.
WE HAVE THREE APARTMENTS IN
BETHESDA.
ABOUT ONE IN 10 OF OUR FAMILIES
ARE CONSIDERED A LONG TERM STAY
FAMILY, MEANING THEY'RE STAYING
WITH US AT LEAST 80 DAYS BUT
OFTEN IT'S SIX MONTHS OR MORE.
THEY PARTICIPATE IN ABOUT 480 OF
THE INTRAMURAL CLINICAL RESEARCH
STUDIES HAPPENING HERE AT THE
CLINICAL CENTER AT 15 OF THE 27
INSTITUTES AND CENTERS.
WE KNOW THAT PATIENTS AND THEIR
FAMILIES ARE A CRITICAL PARTNER
TO MEDICAL RESEARCH, AND SO THIS
IS THE WAY IN WHICH THEY ARE
HELPING THIS PARTNERSHIP ACHIEVE
ITS MISSION FROM HELPING TO
ADVANCE CUTTING EDGE TREATMENTS
TO TRYING TO REMOVE BARRIERS SO
THAT EVERYBODY THAT NEEDS TO
PARTICIPATE IN THE STUDY HERE
CAN, AND OF COURSE WE KNOW THAT
THEY UNLOCK TREATMENTS THAT ARE
THEN SHARED AROUND THE WORLD.
HERE'S SOME EXAMPLES OF THE
IMPACT THAT THE IN NHAS HAD IN
OUR ALMOST 34 YEARS THAT WE'RE
VERY PROUD.
YOU'VE HEARD SOME OF THESE A
LITTLE BIT EARLIER FROM
CAR-T-CELL AND ALL TO SUPPORT
FOR SICKLE CELL DISEASE, SOME
PEOPLE DON'T KNOW HOW MANY KIDS
FROM NIMH, MENTAL HEALTH, STAY
WITH US, WHICH IS AN IMPORTANT
PART OF WHAT WE DO.
AND OF COURSE THE EARLIEST
STUDIES FOR PEDIATRIC HIV AND
AIDS WERE DONE HERE, THOSE KIDS
STAYED WITH US AT THE CHILDREN'S
INN.
FAMILIES COME FROM ALL OVER THE
WORLD, WE'RE UP TO MAYBE 106
COUNTRIES, I THINK IT IS, AND
MORE THAN 16,000 FAMILIES HAVE
STAYED WITH US SINCE THE INN
OPENED.
I CAN STAND UP HERE AND TELL YOU
ABOUT THE CHILDREN'S INN BUT I
THINK IT'S BEST FOR YOU TO HEAR
IT DIRECTLY FROM AUTUMN AND HER
MOM, WHO STAY WITH US AND I
THINK YOU'LL SEE A FAMILIAR
DOCTOR AS WELL.
>> MY NAME IS AUTUMN, I'M
9 YEARS OLD AND I COME FROM
KANSAS.
>> WE COME TO THE CHILDREN'S
INTO GO TO THE CLINICAL TRIALS
AT THE NIH.
SHE HAS NEUROFIBROMA PTOSIS.
>> I'M DR. BMESIG WIDEMANN, AND
I'M DIRECTING A RESEARCH PROGRAM
DIRECTED AT A DISEASE CALLED
NEUROFIBROMATOSIS TYPE 1, ALSO
KNOWN AS NF1.
THE TRIALS THAT WE HAVE DESIGNED
ARE FOR TUMORS CALLED FL PLEXIFM
NEUROFIBROMAS.
THEY ARE NOT CANCER TUMORS BUT
CAN CAUSE LOTS AND LOTS OF
CLINICAL PROBLEMS LIKE PAIN,
DISFIGUREMENT, MOTOR
DYSFUNCTION, AIRWAY DYSFUNCTION.
>> BEFORE SHE WAS BORN, WE WERE
HAVING ULTRASOUNDS WEEKLY,
TRYING TO FIGURE OUT WHY SHE
MIGHT LOOK A LITTLE DIFFERENT IN
MY TUMMY.
AND THEN SHE WAS BORN.
I'M SO HAPPY, AND I CAN TELL
THAT THE NURSES ARE A LITTLE
CONCERNED, THEY KIND OF TAKE HER
OFF TO THE SIDE AND AT THE END
OF IT ALL, THEY SAID WE DON'T
KNOW WHAT'S WRONG, BUT SOMETHING
IS.
WE ACTUALLY HAD A REALLY GREAT
NEUROLOGIST UP IN KANSAS CITY.
THEY TOLD US SHE HAD
NEUROFIBROMATOSIS.
HE DIRECTED US TO THE CLINICAL
TRIAL.
DR. WIDEMANN HAS BEEN HER DOCTOR
SINCE SHE WAS 2 YEARS OLD.
WE REALLY FEEL LIKE WE HAVE AN
ADVOCATE HERE THAT'S FIGHTING
FOR NOT ONLY NF1 BUT FOR AUTUMN
SPECIFICALLY.
>> I'VE KNOWN AUTUMN SINCE SHE'S
BEEN A LITTLE GIRL, VERY LITTLE,
AND SHE'S ALWAYS BEEN A
BEAUTIFUL, ENERGETIC YOUNG LADY.
WHEN SHE WAS STARTED ON THE MEK
INHIBITOR, SHE HAD A NICE
SHRINKAGE, HER TUMOR BECAME
SMALLER AND HER FACIAL TRAUMA
WAS LESS DISFIGURING.
>> WHEN SHE'S NOT ON THE
MEDICINE, IT GROWS DRAMATICALLY.
WHEN SHE IS ON THE MEDICINE,
EVEN IF IT'S NOT SHRINKING A
TON, AT LEAST IT'S STABLE.
>> I THINK AUTUMN LOVES THE
CHILDREN'S INN.
IT'S THE PLACE WHERE THERE'S A
MAILBOX, THERE'S A GIFT, I THINK
EVERY DAY SOMETHING LITTLE IS
THERE THAT SHE LOVES.
SHE ALWAYS HAS SOME NEW LITTLE
FRIENDS WITH HER, SOME STUFFED
ANIMALS.
SHE LOVES THE ATMOSPHERE.
SHE'S VERY OUTGOING AND
ENERGETIC.
I BELIEVE AUTUMN IS ONE OF THE
MAIN REASONS TO COME HERE IS THE
CHILDREN'S INN.
>> SO AFTER A LONG DAY AT THE
HOSPITAL, WE COME BACK HERE TO
THE CHILDREN'S INN.
IT REALLY FEELS LIKE HOME.
WHEN YOU'RE GETTING ABLE TO EAT
HERE, HAVE HOMEMADE MEALS.
>> THE OTHER ASPECT IS THAT
PATIENTS MEET OTHER PATIENTS
WITH NF1.
>> WE ALSO DO ACTIVITIES WITH
OTHER FAMILIES HERE.
>> I CANNOT OVERSTATE HOW
IMPORTANT THIS IS BECAUSE THES
FIND OUTTHEY FIND OUT I'M NOT A.
>> I KNOW AUTUMN FEELS TBAD
ABOUT BEING HERE BECAUSE SHE
KNOWS SHE'S NOT DIFFERENT.
SOMETIMES BACK AT HOME, I THINK
THAT SHE DOES FEEL A LOT
DIFFERENT.
>> I MADE THREE FRIENDS
YESTERDAY.
I LIKE TO FIND BOOKS WITH MY MOM
AND TODAY I READ CAT IN THE HAT
TO HER.
>> THE SENSE THAT THEY ARE NOT
ALONE AND THEY'RE ALL WORKING
JOINTLY WITH US ON IDENTIFYING
EFFECTIVE THERAPIES WITH THE
HELP OF THE CHILDREN'S INN, THAT
IS VERY IMPORTANT AND
IMPRESSIVE.
>> I HAD NO IDEA WHAT
NEUROFIBROMATOSIS WAS WHEN
AUTUMN WAS BORN.
SO TO ME, TELLING PEOPLE WHAT IT
IS IS REALLY IMPORTANT.
THANK YOU TO EVERYBODY AT THE
CHILDREN'S INN, ALL THE STAFF
HERE THAT HAS BEEN FULLY
SUPPORTIVE OF US.
>> THANK YOU.
I'M GOING TO TURN NOW TO SHARE
SOME REALLY EXCITING PLANS FOR
THE FUTURE OF THE CHILDREN'S
INN.
ON THIS SLIDE IS A PHOTO OF OUR
NEWLY RENOVATED PLAYGROUND WITH
THIS HOPE SCULPTURE PROMINENTLY
DISPLAYED IN THE MIDDLE, AND THE
HOPE SCULPTURE SERVES NOT ONLY
AS AN ART BUT ALSO AS A PLAY
STRUCTURE FOR THE KIDS AND IT'S
BEEN A REALLY INSPIRING PLACE
FOR THEM TO PLAY.
SO WHILE WE KNOW THAT NIH IS
WELL POSITIONED TO LEAD IN RARE
DISEASES AND CONTINUING TO
UNLOCK MEDICAL -- THE CHILDREN'S
INN NEEDS TO KEEP PACE WITH
THAT.
SO WE ARE CURRENTLY -- AS I SORT
OF GAVE YOU A SNEAK PEEK AT THE
DESIGN, IN THE PLANNING PHASES
OF OUR INN OF TOMORROW.
AND THE INN OF TOMORROW ALLIANCE
WITH A LOT OF WHAT YOU'VE
ACTUALLY HEARD TODAY.
WE ARE ALIGNED WITH THE CLINICAL
CENTER'S STRATEGIC PLAN TO
SUPPORT, DIAGNOSE AND TREAT
CHILDREN MUCH EARLIER, AND WE'VE
SPENT A COUPLE OF YEARS
INTERVIEWING ALL OF OUR
STAKEHOLDERS FROM CLINICIANS TO
FAMILIES AND PATIENTS AND DONORS
TO THE INN AND WE HAVE THREE
PRIORITIES GUIDING OUR INN OF
THE FUTURE.
THAT IS THAT TO TRANSFORM THE
BUILDING, TO HELP CONTINUE TO
ACCELERATE CUTTING EDGE
PEDIATRIC RESEARCH AND OF COURSE
TO ADVANCE SUSTAINABILITY AND
WELL-BEING.
WE'VE ALSO AS A NON-PROFIT
ORGANIZATION KICKED OFF A
$50 MILLION CAPITAL CAMPAIGN TO
SUPPORT THE INN OF THE FUTURE.
AND THE INN OF THE FUTURE, THE
GOAL OF THE INN OF THE FUTURE IS
ALSO TO SUPPORT KIDS WHO HAVE
LONGER, MORE INTENSE TREATMENTS
TO MEET THE CHANGING NEEDS OF
FAMILIES WHO COME FROM ALL OVER
THE WORLD.
TO BE ACCESSIBILITY FOR ALL, OUR
VISION IS TRULY TO BE ABLE TO
SUPPORT KIDS REGARDLESS OF THE
CRITICALITY OF THEIR ILLNESS AND
REGARDLESS OF THE OBSTACLES THEY
MIGHT FACE IN THEIR LIVES.
TO INCREASE OUR ABILITY TO TAKE
CARE OF VERY SICK CHILDREN
THROUGH MORE BOLD ISOLATION, AND
THEN OF COURSE AS YOU'VE HEARD
TODAY, TO MAKE SURE THAT WE ARE
READY FOR MUCH YOUNGER CHILDREN
WHEN THE CLINICAL CENTER IS
READY.
SO HERE IS A 65% DESIGN OF OUR
INN OF TOMORROW.
EVERYTHING FROM SORT OF THE LEFT
OVER RIGHT HERE IS NEW.
THE PROJECT IS A RENOVATION OF
OUR EXISTING SPACE, WHICH IS THE
RIGHT AND SORT OF IN THE BACK,
AND THEN WE'RE MOVING OUR
ENTRANCE.
BUT OVER HERE WILL BE A 15,000
SQUARE FOOT ADDITION, AND
INCLUDED IN THAT IS A NEW LOBBY.
THIS WHAT WE'RE CALLING A BEACON
OF HOPE, WHICH WE'RE REALLY
EXCITED ABOUT, IT'S A TALL TOWER
THAT CAN BE SEEN FROM ACROSS
CAMPUS AND CERTAINLY BY PATIENTS
WHO ARE IN THE CLINICAL CENTER
AND WILL BE REALLY FUN IN AN
INTERACTIVE ON THE INSIDE.
AND THEN TO THE LEFT HERE WILL
BE NEW APARTMENT-STYLE ROOMS FOR
FAMILIES THAT WILL HAVE THE
CAPABILITY TO SUPPORT KIDS WHO
ARE ON AIRBORNE ISOLATION, WHICH
IS SOMETHING THAT WE HAVE NOT
BEEN ABLE TO DO IN THE PAST, BUT
WE KNOW THAT KIDS ARE GOING TO
DO BETTER IF WE CAN GET THEM OUT
OF THE HOSPITAL WITH THEIR
FAMILIES AND IN AN ENVIRONMENT
THAT IS A LITTLE MORE FAMILIAR,
NOT QUITE HOME, BUT CLOSE TO IT.
AND THEN I JUST HAVE A COUPLE
MORE PHOTOS TO SHOW YOU.
SO HERE'S THE 15,000 SQUARE FOOT
EXPANSION.
WE'RE GOING TO INCREASE OUR
ABILITY -- WE'LL BE ABLE TO TAKE
CARE OF MORE FAMILIES, AND THIS
IS SOMETHING WE'RE VERY EXCITED
ABOUT, THIS IS THE WALKWAY TO
NIH, SO RIGHT NOW IF YOU'RE AT
THE INN, YOU'LL SEE FAMILIES
WALKING THROUGH THE PARKING LOT
TO GET UP TO THE CLINICAL CENTER
IF THEY AREN'T TAKING THE
SHUTTLE.
NOT THE SAFEST WAY FOR KIDS TO
GET TO THE CLINICAL CENTER.
SO THIS WILL BE AN
ADA-ACCESSIBLE COVERED WALKWAY
THAT GETS THEM RIGHT UP TO THE
STREET, NOT QUITE ACROSS THE
STREET, DAN, BUT CLOSE TO IT.
AND WE'RE VERY, VERY EXCITED
ABOUT THAT.
AGAIN, SOME RESPIRATORY
ISOLATION SUITES, JUST FLEXIBLE
ROOMS FOR THE DIVERSE NEEDS OF
FAMILIES THAT ARE VISITING US.
AND THEN I MENTIONED ADVANCE
SUSTAINABILITY AND WELL-BEING,
OUR ENTIRE RENOVATION AND
EXPANSION WILL BE
LEED-SILVER-CERTIFIED.
PART OF THE REASONS WHY WE
STARTED ON THIS PATH WAS THE
CHILDREN'S INN WAS BUILT TO
COMMERCIAL STANDARDS IN 1990,
AND OUR BUILDING HAS SERVED US
WELL, BUT IT'S SHOWING ITS AGE
AND WEAR AND TEAR AND WE NEED TO
MODERNIZE IT IN ORDER TO MAKE
SURE WE'RE READY TO TAKE CARE OF
THE NIH PATIENTS OF THE FUTURE.
ALSO SOMETHING KIND OF EXCITING,
IF YOU ARE DRIVING PAST THE
CHILDREN'S INN, YOU'LL ALSO SEE
A NEIGHBORHOOD TO THE LEFT WHICH
IS, IF I'M ACCURATE, THE FIRST
NEIGHBORHOOD IN BETHESDA, THE
HOUSES WERE BUILT IN 1937.
NIH DIRECTORS USED TO LIVE IN
THESE HOMES AND NOW THEY'RE USED
FOR A VARIETY OF DIFFERENT
REASONS.
THE INN WAS GIVEN ONE OF THESE
TO RENOVATE JUST LIKE WE DID THE
CHILDREN'S INN, AND SO WE BROKE
GROUND ACTUALLY JUST A COUPLE OF
WEEKS AGO, HERE YOU SEE
DR. TABAK AND SOME OTHERS
STANDING WITH ME AT THE
GROUNDBREAKING, WHICH WAS REALLY
EXCITING.
SO THE PLAN FOR THIS HOME IS TO
SUPPORT OUR YOUNG ADULT
PATIENTS, WHICH IS SOMETHING
THAT IS VERY IMPORTANT AND A
PRIORITY FOR US.
SO WE'LL BE ABLE TO SUPPORT SIX
MORE FAMILIES IN THIS SPACE.
THIS IS THE CHILDREN'S INN
HEALTH EQUITY PROMISE.
I WOULD SAY THE MISSION OF THE
CHILDREN'S INN IN AND OF ITSELF
HAS ALWAYS HELD THE VALUES OF
HEALTH EQUITY.
OUR WHOLE GOAL IS TO REDUCE THE
BURDENS AND THE OBSTACLES FACING
FAMILIES, BUT WE THINK WE CAN DO
MORE TO INTEGRATE HEALTH EQUITY
CONCEPTS INTO EVERYTHING WE DO,
AND I WAS EXCITED TO HEAR
DR. HADIGAN THIS MORNING TOO, I
THINK THERE'S JUST AN ALIGNMENT
ACROSS THE WHOLE NIH TO MAKE
SURE THAT WE'RE REALLY THINKING
ABOUT THE INDIVIDUAL NEEDS OF
PATIENTS AND THEIR FAMILIES AND
REALLY LISTENING AND MAKING SURE
THAT THEY FEEL AT HOME HERE AND
THEY FEEL REALLY COMFORTABLE
PARTICIPATING IN THE RESEARCH
FOR AS LONG AS THEY NEED TO
STAY.
THAT IS THE END OF MY
PRESENTATION.
THANK YOU FOR THE OPPORTUNITY.
I'M HAPPY TO ANSWER ANY
QUESTIONS WHILE I'M HERE.
>> JENNIE, WHAT'S THE SOURCE OF
FUNDS FOR EVERYTHING THAT YOU'RE
HOPING TO DO?
>> FOR THE NEW BUILDING?
IT'S A CAPITAL CAMPAIGN.
WE'RE IN CONSIDERED WHAT'S
CONSIDERED THE QUIET PHASE OF
THE CAPITAL EXAN CAMPAIGN AND L
COME FROM FLAN LOW THEE.
MERCK WAS THE ORIGINAL DONOR,
THE $3.7 MILLION CAME FROM MERCK
AND THEY CAME BACK TO US WITH
THE FIRST LEADERSHIP GIFT SO THE
FIRST IS FROM MERCK.
WE'RE ABOUT HALFWAY THERE.
>> DAVID.
>> I WONDER WHAT'S THE PRINCIPAL
SOURCE FOR THE ANNUAL OPERATING
BUDGET?
>> SAME.
WE'RE NOT A FEDERALLY FUNDED
INSTITUTION.
WE DO RECEIVE A VERY SMALL
STIPEND FROM EACH OF THE
INSTITUTES FOR EACH FAMILY THAT
STAYS WITH US.
SO WE -- AGAIN, IT INDIVIDUALS,
IT'S FOUNDATIONS, CORPORATIONS,
IT'S PHILANTHROPY.
>> DR. DEVASKAR.
>> I JUST WANT TO STATE MY
APPRECIATION BECAUSE I DID VISIT
THE INN AND IT'S JUST A
FANTASTIC PLACE.
MANY OF US HAVE TO RELY ON
RONALD MACK DOMED HOUSES AND
RONALD MCDONALD HOUSES AND TO
HAVE THIS AT THE NIH IS JUST
PHENOMENAL.
I ALSO NOTICED THAT YOU HAVE A
PET THERAPY PROGRAM, I SAW SOME
DOGS.
MAYBE YOU CAN COMMENT ON THAT
FOR US?
>> THANK YOU FOR THE QUESTION,
AND THE RONALD MCDONALD HOUSE IS
WONDERFUL AS WELL.
I SHOULD SAY THAT JUST AS THE
TREATMENT AT THE NIH, ALL OF THE
SERVICES AT THE CHILDREN'S
CENTER ARE FREE OF CHARGE AS
WELL.
THE PET THERAPY PROGRAM, IT'S
ZILLY AND THEN ALSO WE'RE WELL
COORDINATED AS EVERYTHING WE DO
HERE WITH THE NIH PET THERAPY
PROGRAM.
SO THERE'S PEOPLE AND THEIR PETS
THAT THEY'VE TRAINED TO BE
ASSIST ANIMALS THAT VISIT THE
CHILDREN'S INN AND THEY ALSO
VISIT THE CLINICAL CENTER.
PETS ARE -- I CAN'T SAY ENOUGH
ABOUT HOW IMPORTANT PETS ARE.
ZILLY IS THE MOS MOST BELOVED SF
MEMBER BECAUSE KIDS ARE MISSING
THEIR PETS AND HOME AND SOME OF
THESE KIDS ARE AWAY FROM THEIR
PETS FOR A VERY LONG TIME, SO WE
MAKE SURE WE FULFILL THAT NEED
WHENEVER WE CAN.
>> TONI.
>> THANKS, MISS LUCCA.
I AM INTERESTED IN TAKING A TOUR
OF THAT FACILITY.
RIGHT NOW, HOW MANY FAMILIES ARE
YOU ABLE TO HOUSE AND WITH THE
NEW SPACE, WHAT IS THIS --
>> RIGHT NOW WE'RE ABLE TO
SUPPORT 60 FAMILIES AT THE INN
ON THIS CAMPUS.
WE ALSO HAVE THREE APARTMENTS IN
BETHESDA FOR KIDS WHO MIGHT BE
ON A TYPE OF ISOLATION THAT WE
CANNOT SUPPORT AT THE CHILDREN'S
INN OR THERE ARE SOME FAMILIES
THAT JUST PREFER TO BE IN THAT
ENVIRONMENT.
WHEN WE ARE DONE WITH THE
RENOVATION AND THE ADDITION,
PART OF THE RENOVATION IS
RIGHT-SIZING THE ROOMS, SO
OVERALL WITH THE KIND OF
SMALL -- WE CALL IT THE RABSON
HOUSE BECAUSE DR. RABSON USED TO
LIVE THERE, THE YOUNG ADULTS I
MENTIONED, WE WILL HAVE 71 ROOMS
AVAILABLE FOR FAMILIES.
>> WOW!
>> VERY EXCITING.
AND YOU CAN COME VISIT WHENEVER
YOU WOULD LIKE.
I WOULD LOVE THE OPPORTUNITY TO
SHOW YOU.
>> AND THE PET PROGRAM, YOU'RE
NOT KIDDING, THEY REALLY, REA
REALLY -- THEY ADD LIFE TO -- I
MEAN, REGARDLESS OF WHAT YOU'RE
GOING THROUGH, IT REALLY HELPS.
>> THAT'S RIGHT.
THAT'S RIGHT.
I CAN'T SAY ENOUGH ABOUT THE
THERAPEUTIC, EDUCATIONAL AND
RECREATIONAL PROGRAMS THAT WE DO
IN ADDITION TO LODGING.
THAT'S WHAT I THINK FAMILIES
REALLY GET EXCITED ABOUT AND YOU
SORT OF SAW AUTUMN TAKE
ADVANTAGE OF IN THE VIDEO AS
WELL.
>> OKAY, JENNIE, THANK YOU SO
VERY MUCH.
GREAT PRESENTATION.
>> THANK YOU.
>> WHEN HA IS THE CONSTRUCTION
GOING TO BE COMPLETED?
>> WHAT A GREAT QUESTION.
WE'RE HOPING FOR SUMMER 2027
DELIVERY.
THE RENOVATION WILL GO FIRST AND
THEN THE EXPANSION.
>> SUPER.
THANK YOU VERY MUCH.
DR. WIDEMANN.
>> JUST BECAUSE YOU SAW ONE OF
MY PATIENTS IN THE VIDEO, WHO
HAD A BIG DISFIGURING PLEXIFORM
NEUROFIBROMA WHEN SHE STARTED
TREATMENT.
THE MEK INHIBITOR WAS ACTUALLY
FDA-APPROVED BECAUSE IT DOES
SHRINK TUMORS AND APPEARS TO
PREVENT THEM FROM GROWING, BUT I
WANT TO LET YOU KNOW THE NEXT
STUDY THAT WE'LL BE DOING THAT
WE'LLWILL BE OPENING VERY SOON O
ACTUALLY TREAT PATIENTS, WE KNOW
THESE TUMORS GROW IN YOUNG KIDS,
AT A TIME WHEN THE TUMORS ARE
ASYMPTOMATIC AND WE WANT TO SEE
WILL THE MEK INHIBITOR PREVENT
THE DEVELOPMENT OF THE
DISFIGURING MORBIDITY BECAUSE
STARTING TREATMENT LATE WILL
SHRINK THE TUMOR SOME BUT NOT
TAKE THE MORBIDITY AWAY.
SO THAT STUDY WILL BE OPENING
SOON.
IT WILL BE KIDS LESS THAN
6 YEARS SO WE'LL DEFINITELY BE
ABLE TO SEE SOME.
SOME, WE MAY NOT BE ABLE TO SEE.
BUT I JUST THOUGHT I'LL
HIGHLIGHT THIS AND THE
CHILDREN'S INN REALLY HAS BEEN
INSTRUMENTAL FOR MANY OF MY
PATIENTS AND HOPEFULLY WE'LL SEE
THE YOUNGER KIDS SOON.
AND MAYBE BE ABLE TO DEMONSTRATE
THAT WE PREVENT THE
DISFIGUREMENT AND OTHER PROBLEMS
THAT COME FROM THESE TUMORS.
>> THANK YOU, DR. WIDEMANN.
APPRECIATE THAT.
ALL RIGHT.
WE ARE MOVING THROUGH THE
PROGRAM TODAY, THROUGH THE
AGENDA, AND WE'RE DOWN TO OUR
LAST PRESENTATION OF THIS
MEETING.
WE'VE GOT MR. DAN WHEELAND WITH
US, DIRECTOR OF THE OFFICE OF
RESEARCH FACILITIES AT THE NIH
OFFICE OF THE DIRECTOR.
AND HE'S A FAMILIAR PRESENTER TO
US BECAUSE THIS WILL BE DAN'S
SEVENTH ANNUAL PRESENTATION TO
THE BOARD.
HE WAS HERE EXACTLY ONE YEAR AGO
FOR THE FEBRUARY 2023 MEETING
AND SO WE APPRECIATE DAN KEEPING
US UPDATED REGULARLY ON BUILDING
FACILITIES AND NEW PROJECTS ON
CAMPUS, ESPECIALLY THOSE
INVOLVING THE CLINICAL CENTER
AND THIS NEW SKI CHALET THAT
YOU'RE BUILDING.
SO THANK YOU.
>> THANK YOU FOR THIS
OPPORTUNITY.
IT'S A REAL HONOR TO DO THIS.
WE'LL START OFF WITH SOME
ANNOUNCEMENTS REGARDING OUR
FUNDING PROFILE.
WE'VE CONTINUED TO ENGAGE WITH
CONGRESS ON A QUARTERLY BASIS
AND MEET WITH STAFF OF THE
SENATE AND HOUSE APPROPRIATIONS
SUBCOMMITTEE, AND AS A RESULT,
YOU'VE SEEN SOME INCREASES IN
OUR ANNUAL APPROPRIATIONS FOR
BUILDINGS AND FACILITIES.
CURRENTLY WE'RE OF COURSE IN A
CONTINUING RESOLUTION.
WE'RE HOPING THAT WHEN AN
APPROPRIATION IS PASSED, THAT WE
SUSTAIN OR IMPROVE UPON THOSE
INCREASES.
ALSO SINCE WE DEVELOPED THIS
SLIDE, WE ACTUALLY RECEIVED THE
FUNDING, THE SO-CALLED NEF
FUNDING, SO WE RECEIVED IN THIS
IS FISCAL YEAR AN ADDITIONAL
$120 MILLION FOR FIVE PROJECTS
LISTED THERE.
THE FIRST THREE HAVE DIRECT OR
INDIRECT BENEFITS TO THE
BUILDING 10 COLLECTION COMPLEX.
10 COMPLEX.
A PROJECT THAT I BRIEFED YOU ON
A YEAR AGO, THE PHARMACY
INTRAVENOUS ADMIXTURE UNIT
SUFFERED A SIGNIFICANT SETBACK.
WE TESTED THE PASSTHROUGH UNITS
AND DETERMINED THAT THEY WERE
NONCOMPLIANT AND THEY WOULD
BECOME A MAINTENANCE NIGHTMARE,
AND SO WE BIT THE BULLET, SO TO
SPEAK, AND REPLACED ALL 24 OF
THOSE, AND THEY'VE NOW BEEN
INSTALLED, AND SO NOW WE'RE
GEARING UP AGAIN WITH THOSE
FINAL STEPS LISTED AT THE BOTTOM
OF THIS SLIDE TO QUALIFY THIS
SPACE, CONDUCT AIR VISUALIZATION
STUDIES TO UNDERGO THE
ENVIRONMENTAL MONITORING AND
PERFORMANCE QUALIFICATION, AND
THEN OUR GOAL IS TO BRING THE
FACILITY TO THE STERILE PRODUCTS
FOR HUMAN ADMINISTRATION
COMMITTEE IN NOVEMBER, AND
ASSUMING APPROVAL, ACTIVATE THE
FACILITY.
ANOTHER EXCITING PROJECT THAT'S
EMBLEMATIC OF THE RESEARCH
THAT'S CONDUCTED HERE IS THE
RADIOPHARMACY AND CELL LABELING
FACILITY.
THIS IS APPROXIMATELY
$30 MILLION WORTH OF INVESTMENT,
AND THE DESIGN HAS BEEN
COMPLETED, THE CONSTRUCTION
CONTRACT HAS BEEN AWARDED AND
THE CONTRACTOR HAS MOBILIZED AND
OUR GOAL IS TO COMPLETE THE
FACILITY IN MAY OF 2025.
WE'RE ALSO INVESTING IN STERILE
PROCESSING UPGRADES, AND THIS IS
A PHASED PROJECT WHERE FIRST WE
COMPLETED WORK ON THE -- IN THE
BASEMENT OF BUILDING 10, AND
SINCE WE DEVELOPED THIS SLIDE,
THAT WORK HAS BEEN COMPLETED, SO
THE FUNCTION IS NOW IN THE
BASEMENT, THIS FREEZES UP TO
CFREEZE -- THISFREES US UP TO RN
THE SECOND FLOOR SO WE'LL HAVE
THIS SQUARED AWAY ESTIMATED IN
NOVEMBER OF 2024.
I'VE BRIEFED THIS BOARD BEFORE
REGARDING THE BUILDING 10 E
WING, WHICH IS A RENOVATION FROM
LEVELS B2 ALL THE WAY UP TO THE
ROOF, SO MORE THAN 15 FLOORS
WORTH OF RENOVATION.
THIS WILL BE THE PRIMARY HOME
FOR THE DEPARTMENT OF
TRANSFUSION MEDICINE, AND THIS
MONTH WE ARE GOING TO CONTINUE
OCCUPANCY AND WE ANTICIPATE BY
SOMETIME NEXT MONTH WE'LL HAVE
ALL OF THE FLOORS OCCUPIED
EXCEPT FOR THE CGMP SPACE, WHERE
THAT ENTIRE FLOOR, THE 12TH
FLOOR, IS DEVOTED TO CELL
THERAPY.
IT WILL BE OUR LARGEST ASEPTIC
PROCESSING FACILITY, COMPLETE
WITH STATE OF THE ART CLEAN
ROOMS.
THAT, TOO, WILL HAVE PASSTHROUGH
UNITS, BUT THOSE ARE
MANUFACTURED BY THE SAME FIRM
THAT RECENTLY CONSTRUCTED THE
NEW ONES FOR THE IVAU.
SO WE'LL UNDERGO A VERY
IMPORTANT AND THOROUGH
VALIDATION PROCESS FOR THAT
FACILITY.
THIS NEXT SLIDE IS SIMPLY A
CROSS-SECTION THAT SHOWS THE
OCCUPANCY BY FLOOR AND THE
CLINICAL CENTER RELATED SPACE
SHOWN IN GREEN FONT.
THE CENTER FOR CELLULAR
ENGINEERING PROJECT IS ANOTHER
PROJECT THAT'S BEEN STRUGGLING.
WE HAD SOME PROBLEMS WITH
MAINTAINING A STATE OF CONTROL
WHEN WE LOSE ELECTRICAL POWER,
AND WE SUBJECT THE FACILITY TO
MONTHLY GENERATOR TESTS AND WE
TRANSITION FROM NORMAL TO
EMERGENCY BACK TO NORMAL POWER,
AND THE DIFFERENTIAL PRESSURES
WEREN'T CONDUCTED -- THEY
WEREN'T FUNCTIONING PROPERLY SO
WE INVESTED IN AN
UNINTERRUPTIBLE POWER SYSTEM TO
ESSENTIALLY KEEP THAT FACILITY
UNAWARE, IF YOU WILL, OR
UNAFFECTED BY THOSE POWER
ISSUES.
AND WE'RE GOING TO BE DOING SOME
IMPORTANT TESTING STARTING THIS
EVENING INTO TOMORROW TO ENSURE
THAT THIS FACILITY NOW OPERATES
WITH THAT UPS SYSTEM.
WE WILL GET IT RIGHT.
OUR LARGEST PROJECT ACTUALLY IN
THE HISTORY OF NIH DOLLAR-WISE
IS THE SRLM PROJECT, A PROJECT
THAT WAS BOOSTED WITH A LETTER
THAT THIS COMMITTEE SENT OFF AND
WE REALLY APPRECIATE YOUR
SUPPORT.
WE CONTINUE TO MAKE SOME
SUBSTANTIAL PROGRESS SINCE WE
LAST BRIEFED YOU.
US A MAY RECALL, THERE ARE FIVE
PHASES TO PROJECT.
PHASE ZERO WAS A PREPARATORY
PHASE TO GET EVERYTHING READY SO
WE MINIMIZE THE DISRUPTION TO
THE REST OF THE CAMPUS.
WE ESSENTIALLY ENCLAVED THE SITE
OFF SO THAT WE DON'T HAVE
CROSS-CONTAMINATION, IF YOU
WILL, FROM A NUMBER OF
PERSPECTIVES, SAFETY, SECURITY.
WE HAVE A CHILD CARE CENTER, WE
HAVE A FIRE STATION, WE HAVE THE
SAFFER FAMILY LODGE SO WE TOOK
CARE OF ALL OF THOSE
INTERDEPENDENCIES AND NOW WE'RE
IN PHASE ONE, WHICH IS
CONSTRUCTION OF THE SITE
UTILITIES, AND WE HAVE TO -- WE
HAD TO REMOVE A UTILITY TUNNEL
THAT WAS ONCE PRESENT AND WE ARE
NOW ON THE VERGE OF, NEXT MONTH,
COMPLETING THE INSTALLATION OF
THE FOUNDATION PILES.
THAT WILL THEN ENABLE US TO
CONSTRUCT THE ADDITION, AND ONCE
THE ADDITION IS COMPLETE, WE
MOVE THE NATIONAL CANCER
INSTITUTE OUT OF FLOORS 1 AND
3 SO WE CAN THEN UTILIZE THE SUM
OF THE EXISTING SPACE IN THE
ADDITION TO PUT RADIOLOGY ON THE
FIRST FLOOR IN CONTIGUOUS SPACE
AND SURGERY ON THE THIRD FLOOR
IN CONTIGUOUS SPACE, AVOIDING
FRAGMENTING THOSE IMPORTANT
PROGRAMS.
SO WE'VE GOT SOME TIME LAPSE
PHOTOGRAPHS THAT SORT OF TAKE
YOU BACK IN TIME.
THIS IS ESSENTIALLY WHEN WE
MOBILIZED AND BEGAN SOME OF THIS
PREPARATORY WORK, AND THEN YOU
CAN SEE THAT EXCAVATION BEGAN
AND WE WERE DEMOLISHING THE
UTILITY TUNNEL.
THIS SHOWS THE UTILITY TUNNEL
HAVING BEEN DEMOLISHED AND THE
DEBRIS IS BEING REMOVED.
NOW YOU START TO SEE SOME CRANES
AND DRILLING RIGS, AND YOU CAN
SEE THAT IN THE BACKGROUND,
THERE'S THE RIG DRILLING 60-FOOT
DEEP FOUNDATION PILES.
SO LOTS OF REALLY POSITIVE
PROGRESS REGARDING THE SLRM.
THERE ARE MISCELLANEOUS PROJECTS
WE'RE DOING FOR THE ENVIRONMENT
OF CARE.
AS YOU CAN SEE AS AN EXAMPLE
WE'RE REFRESHING OUTPATIENT EXAM
ROOMS ON FLOORS 7 AND 9.
WE'RE REFRESHING PUBLIC
RESTROOMS AND PATIENT ROOMS.
ANOTHER EXCITING PROGRAM IS
WE'RE CONVERTING AN
UNDERUTILIZED CAFETERIA ON THE
SECOND FLOOR TO A CENTER FOR
ALZHEIMER'S AND RELATED
DEMENTIAS OUTPATIENT CLINIC,
WHICH WILL COMPLEMENT THEIR
BASIC RESEARCH CAPABILITY THAT
WAS CONSTRUCTED A FEW YEARS AGO.
AND WE'LL ALSO PROVIDE SOME
SPACE FOR THE EYE INSTITUTE, THE
HEART, LUNG AND BLOOD INSTITUTE,
AS WELL AS MINORITY HEALTH, AND
SO THIS IS A REALLY EXCITING
OPPORTUNITY TO REPURPOSE
OTHERWISE UNDERUTILIZED SPACE.
THIS IS ABOUT A $20 MILLION
INVESTMENT.
WE'RE ALSO UPGRADING NURSE
STATIONS.
AS YOU CAN SEE.
WE'RE ALSO RENOVATING THE PACU
AND PRE-OP AREAS.
THIS PROJECT ENCOUNTERED SOME
UNFORESEEN CONDITIONS, BUT WE'RE
ALMOST DONE.
WE ANTICIPATE HAVING COMPLETION
OCCUR IN MARCH.
THIS IS NOT NECESSARILY A
CAPITAL IMPROVEMENT, BUT IT'S
SOMETHING THAT WE THOUGHT
NOTEWORTHY.
IN AUGUST OF 2011, WE
EXPERIENCED IN BETHESDA A
SUBSTANTIAL EARTHQUAKE THAT HAD
ITS EPICENTER IN MINERAL,
VIRGINIA.
I WAS BASICALLY CLUELESS AS TO
WHAT TO DO.
I REMEMBER STANDING ON THE STEPS
OF BUILDING 1 WITH DR. TABAK.
WE STILL HAD BLACKBERRIES AT THE
TIME.
WE WERE SENDING MESSAGES OUT.
THERE WAS SIGNIFICANT CHAOS.
AND SO AS A RESULT OF THAT, WE
SAID WE HAVE TO BE MORE
PREPARED, SO WE WORKED WITH THE
USGS AND IN 2015, HAD TWO STRONG
MOTION SENSORS INSTALLED IN THE
VICINITY OF THE HOSPITAL, AN WE
CONDUCTED IN PARALLEL A
STRUCTURAL ANALYSIS OF THE
CLINICAL RESEARCH CENTER, AND SO
NOW WE WILL BE ABLE TO TELL IN
VERY SHORT ORDER WHAT THE
IMMEDIATE GROUND PEAK
ACCELERATION WAS AND COMPARE
THAT WITH THE CAPACITY OF THE
CRC.
BY DOING THAT, WE CAN MAKE MORE
INFORMED DETERMINATIONS AS TO IS
THERE A LOW, MEDIUM OR HIGH
LIKELIHOOD THAT WE HAVE TO
EVACUATE PATIENTS.
THIS IS TIMELY BECAUSE WE HAD AN
EARTHQUAKE NOT THAT LONG AGO IF
ROCKVILLE, MARYLAND, ALTHOUGH IT
WASN'T FELT HEAVILY HERE, AND AS
THE LAST BULLET INDICATES, THE
USGS REVEALED ITS LATEST
NATIONAL SEISMIC HAZARD MODEL
AND THERE WERE NOTEWORTHY
CHANGES IN THE NEW MODEL
RELATIVE TO THE ATLANTIC COASTAL
CORRIDOR.
ONE OF THE THINGS THAT SURPRISED
ME WHEN I STARTED LOOKING INTO
THIS IS THAT WHILE THE FREQUENCY
OF EARTHQUAKES IS GREATER ON THE
WEST COAST, THE NATURE OF THE
SUBSURFACE GEOLOGY IS
SIGNIFICANTLY DIFFERENT.
SO IN ESSENCE, AS I UNDERSTAND
IT, I'M NOT A SEISMOLOGIST, BUT
AN EARTHQUAKE WILL PROPAGATE
FURTHER ON THE EAST COAST
BECAUSE OF THE ROCKY SUBSURFACE
CONDITIONS, SO THE MINERAL,
VIRGINIA EARTHQUAKE PROPAGATED
QUITE A SIGNIFICANT DISTANCE.
WHERE AN EQUIVALENT EARTHQUAKE
ON THE WEST COAST MIGHT NOT HAVE
BEEN FELT AT SUCH A DISTANCE.
SO IN ESSENCE, THIS BOILS DOWN
TO THE FAR RIGHT VALUES ARE THE
DECIMAL PERCENTAGE OF THE
GRAVITATIONAL ACCELERATION, AND
SO NOW WE HAVE AN ABILITY TO
READ THESE MONITORS AND
DETERMINE, FOR EXAMPLE, IF THE
PEAK GROUND ACCELERATION IS
LOWER THAN .05G, THEN WE HAVE A
HIGH DEGREE OF CONFIDENCE THAT
THE CRC WILL WITHSTAND THAT WITH
NO STRUCTURAL DAMAGE.
WE'LL STILL DEPLOY OUR SITE
ASSESSMENT TEAMS TO LOOK AT
UTILITIES TO SEE IF SOMETHING
FELL OFF SHELVES AND WE WILL
VERIFY THE CONDITION OF THE
STRUCTURE, BUT AT LEAST WE HAVE
A MUCH BETTER IDEA OF WHAT WE'RE
UP AGAINST.
TURNING BACK TO CAPITAL
PROJECTS, ANOTHER PROJECT THAT
IS ABSOLUTELY INDISPENSABLE TO
THE ENVIRONMENT OF CARE IS THE
ELECTRICAL INFRASTRUCTURE.
THE CURRENT INFRASTRUCTURE IS
OUTDATED AND IT DIFFICULT TO
FIND REPAIR PARTS SO WE'RE
INVESTING ABOUT $80 MILLION IN
THIS NEW FACILITY, WHICH WILL BE
HARDENED, THE STRUCTURE WILL BE
VERY ROBUST, AND WE'LL HAVE NEW
GENERATORS AND FUEL TANKS, NEW
SWITCH GEAR THAT WILL BENEFIT
THE ENTIRETY OF THE BUILDING 10
COMPLEX.
AND WITHOUT THIS, WE WOULD NOT
HAVE HAD SUFFICIENT POWER TO
PROVIDE POWER TO THE SRLM.
ANOTHER PROJECT THAT'S SORT OF
BEHIND THE CURTAIN BUT IMPORTANT
IS WHAT WE CALL THE BLACK START
OF OUR COGENERATION PLANT.
IN ESSENCE, WE DO HAVE A
COGENERATION PLANT NOW THAT
BYRNES NATURAL GAS AND GENERATES
LEELECTRICITY AND STEAM BUT IT S
NOT DESIGNED TO OPERATE
AUTONOMOUSLY, THAT IS, IN THE
ABSENCE OF COMMERCIAL POWER, IT,
TOO, WOULD BE INOPERABLE.
THIS PROJECT MAKES THE COGEN
PLANT AUTONOMOUS AND COULD
OPERATE AS LONG AS WE HAVE
NATURAL GAS TO POWER IT, WE CAN
GENERATE 23 MEGAWATTS OF POWER.
AND THEN WE CAN GENERATE -- WE
CAN UTILIZE THAT POWER TO
GENERATE CHILLED WATER AND
STEAM.
THERE IS A CAVEAT TO THIS THAT
AS WE SPEAK, WE COULD USE THIS
TO GENERATE STEAM IN OUR BOIL
BOILERS.
THE GENERATION OF CHILL WATER
REQUIRES AN IMPROVEMENT TO OUR
ELECTRICAL GEAR THAT CAN
CONNECTS THESE AND THAT'S FUNDED
AND THAT'S UNDERWAY.
THE POINT IS, WE'RE DOING OUR
BEST TO PREPARE FOR EMERGENCY
SCENARIOS, WHETHER THEY'RE
MAN-MADE OR NATURAL EVENTS.
WE REALLY NEED TO BE PREPARED
FOR UNFORESEEN CIRCUMSTANCES.
SO I'VE GOT TWO QUICK SUMMARY
SLIDES.
BUILDING 10, E WING, IS REACHING
THE -- APPROACHING THE END ZONE,
SO IT WILL BE REALLY EXCITING
FOR DTM.
THE INTRAVENOUS ADMIXTURE UNIT
SUFFERED THIS SETBACK BUT ON A
POSITIVE NOTE, WE'VE PROCURED
NEW PASS-THROUGH UNITS.
WE'RE COMMITTED TO MAKING SURE
THESE ARE OF THE HIGHEST
QUALITY.
THERE ARE A NUMBER OF OTHER
PROJECTS THAT WILL IMPROVE THE
ENVIRONMENT OF CARE AND
BENEFITING PATIENTS AND THE
STAFF ALIKE, AND IMPROVING
EMERGENCY PREPAREDNESS.
THE SRLM PROJECT HAS MADE SOME
VERY STRONG PROGRESS SINCE YOUR
LAST VISIT.
I DIDN'T MENTION THIS IN THE
SLIDES BUT WE DID SUFFER A
SETBACK WITH RESPECT TO THE
EXCAVATION OPERATIONS.
WE ENCOUNTERED FILL, SOIL THAT
CONTAINED ASBESTOS.
IT APPEARS AS THOUGH YEARS AGO,
WHEN THEY BROUGHT IN FILL FROM
ANOTHER SITE TO CONSTRUCT THE
CRC, IT WAS CONTAMINATED WITH
ASBESTOS.
SO WE'RE ACCUSTOMED TO FINDING
ASBESTOS AS INSULATION ON PIPES
AND THINGS LIKE THAT, BUT THIS
WAS ACTUALLY IN THE SOIL.
SO WE HAD TO FIND A SOURCE TO
DISPOSE IT.
WE ALSO FOUND SOME FUEL
UNDERGROUND.
WE TOOK CARE OF ALL OF THOSE
REQUIREMENTS.
WE TOOK AIR QUALITY READINGS TO
MAKE SURE THAT DURING THE
ASBESTOS OPERATIONS, THAT WE
DIDN'T PUT ANYBODY IN HARM'S
WAY.
WE'VE DOCUMENTED ALL THAT.
ANOTHER THING THAT'S NOTE WORE
THREE ABOUT THE SRLM IS WE PUT
IN PLACE NOISE AND VIBRATION
PROTOCOLS SUCH THAT IF THE
DEPARTMENT OF PERIOPERATIVE
MEDICINE WAS CONDUCTING A
PROCEDURE AND NOISE OR
VIBRATIONS WERE IMPACTING THEM,
WE HAVE A HOTLINE, SPO SO TO S,
THAT ENABLES US TO DIRECT THE
CONTRACTOR TO CEASE OPERATIONS
IMMEDIATELY.
WE ACTUALLY HAD A CASE IN
JANUARY WHERE WE HAD TO EXERCISE
THAT AND IT WORKED SUCCESSFULLY,
SO WE'RE PLEASED TO REPORT THAT.
THE DESIGN REVIEW PROCESS, YOU
MAY RECALL THIS PROJECT INVOLVES
PARALLELLING CONSTRUCTION AND
DESIGN ACTIVITIES, SO WHILE THE
STRUCTURE IS DESIGNED, SOME OF
THE MECHANICAL ELECTRICAL
PLUMBING AND ARCHITECTURAL
DETAILS ARE STILL BEING K DESIGD
AND THE DESIGNER SUBMITTED SOME
DRAWINGS THAT HAD SOME ERRS AND
OMISSIONS AND WE REJECTED THE
SUBMISSIONS AND SENT THEM BACK
TO THE DRAWING BOARD.
IT'S REALLY CRITICAL THAT WE GET
THESE DETAILS RIGHT ON PAPER.
IN TERMS OF THE CAPITAL FUNDING
OUTLOOK, I MENTIONED THE
QUARTERLY MEETINGS ARE PROVING
BENEFICIAL.
WE ALSO HAVE -- WE HAVE HAD THE
OPPORTUNITY TO BRING THE STAFF
TO THE CAMPUS, AND WE'VE SHOWN
THEM A NUMBER OF PLACES WHERE
OUR FACILITIES' CONDITIONS ARE
ADVERSELY IMPACTING OUR ABILITY
TO CONDUCT STATE OF THE ART
SCIENCE.
I TALKED ABOUT THE INCREASES IN
THE PNF APPROPRIATION AND THE
FACT THAT WE ARE CURRENTLY IN A
CR.
THIS IS IMPORTANT TO US NOT
BECAUSE -- THE AMOUNT OF THIS
YEAR'S APPROPRIATION, WELL, NOT
ONLY, IN FACT THIS YEAR BUT
OFTEN SERVES AS A BENCHMARK FOR
FUTURE YEARS, SO WE'RE WORKING
HARD TO PROTECT THAT INCREASE
THAT WE'VE WORKED SO HARD TO
ACHIEVE.
OTHER POSITIVE SIGNS INCLUDE THE
FACT THAT DURING THE NIH
LEADERSHIP FORUM IN NOVEMBER,
THERE WAS A ROBUST DISCUSSION,
TWO PANEL DISCUSSIONS ABOUT THE
CRITICALITY ABOUT ADDRESSING OUR
FACILITIES AND INFRASTRUCTURE
NEEDS AND ON DECEMBER 20TH, DRS.
BERTAGNOLLI AND RATHMELL
PARTICIPATED IN A CAMPUS TOUR I
WAS HONORED TO LEAD AND THEY
DEMONSTRATED A LOT OF INTEREST
IN OUR FACILITIES.
SO THANKS FOR YOUR CONTINUED
SUPPORT, AND NOW I STAND BY FOR
ANY QUESTIONS.
>> THANKS, DAN.
ANY QUESTIONS?
STEPHANIE?
>> NOT A QUESTION, JUST A
COMMENT.
YOU'RE SO MODEST.
I MEAN, LOOK AT ALL THIS WORK,
IT'S INCREDIBLE.
SO CONGRATULATIONS.
>> I COULD ADD THAT WHEN I
SUMMED UP THE ACTIVE PROJECTS
THAT ARE TAKING PLACE, SOME OF
WHICH WERE MENTIONED TODAY BUT
THERE ARE OTHERS THAT ARE IN
VARIOUS PHASES OF DESIGN AND
CONSTRUCTION, IT'S APPROXIMATELY
$900 MILLION WORTH OF ACTIVE
PROJECTS THAT ARE IN VARIOUS
PHASES.
SO NONE OF THIS WOULD HAVE ABOUT
POSSIBLE WITHOUT STRONG SUPPORT
FROM NIH, THE HHS, OMB AND
CONGRESS LEVEL OF SUPPORT.
AND YOUR COMMITTEE HAS BOLSTERED
OUR CREDIBILITY IN OR TICK
LATING OUR NEEDS AN -- INARTICUD
MAKING SURE THAT THE RESEARCH
HOSPITAL REQUIREMENTS ARE MET.
SO IT'S REALLY -- IT TAKES A
VILLAGE TO RAISE A KID FOR SURE.
>> IT IS ALSO VERY TRUE THAT
TRYING TO KEEP OUR
INFRASTRUCTURE ACROSS CAMPUS
ACTIVE IS QUITE A HUMBLING
EXPERIENCE, STEPHANIE.
>> TONI.
>> JUST A QUICK QUESTION.
WHAT MADE YOU ALL TEST THE SOIL
AND FOUND THAT IT WAS ASBESTOS,
WHAT MADE YOU ALL DECIDE THAT
YOU SHOULD TEST THAT SOIL?
>> GREAT QUESTION.
SO FOR THE FOLKS JOINING
VIRTUALLY, THE QUESTION WAS, HOW
DID WE GO ABOUT EVEN THINKING
THAT THERE MIGHT BE ASBESTOS IN
THE SOIL?
AND THE ANSWER IS THAT IT WAS
ACTUALLY VISUAL.
YOU COULD SEE A LAYER OF BROWN
SOIL, AND THEN YOU SAW THIS
LAYER OF WHITE MATERIAL.
AND THE PEOPLE WHO SPECIALIZE IN
THIS SAID, WE SHOULD TEST THIS,
AND INDEED, THEY TESTED IT AND
FOUND TO BE ASBESTOS.
SO IT WAS VISUALLY EVIDENT AS WE
WERE CONDUCTING THE EXCAVATION
OPERATIONS.
>> AND THAT LED TO THE DISCOVERY
OF THE LEAK AS WELL?
>> YES, YES.
>> WELL, THANK GOD FOR ASBESTOS.
>> DAVID.
>> THE CENTERS THAT THE USGS
INSTALLED BY THE CRC, ARE THESE
SENSORS STILL IN PLACE AND ARE
THEY GOING TO BE PROVIDING
ONGOING REALTIME DATA?
>> YES.
THE SENSORS -- INTERESTINGLY
ENOUGH, WHEN I STARTED ASKING,
WHERE ARE THE NEAREST SENSORS,
YOU WOULD THINK WASHINGTON, D.C.
WOULD HAVE SENSORS.
THEY DON'T.
THERE HAS BEEN THIS BIAS THAT
EARTHQUAKES OCCUR ON THE WEST
COAST, SO THE EAST COAST IS
POORLY REPRESENTED.
SO WHEN WE OFFERED TO DEVOTE, IF
YOU WILL, LAND TO THE USGS TO
HOST THESE, THEY SAID, WOW,
THAT'S A WIN-WIN.
AND SO THEY WERE INSTALLED IN
2015, AND THEY'RE STILL ACTIVE,
AND THEY PROVIDE THE MAINTENANCE
FOR THEM.
THEY COME OUT EVERY ONCE IN A
WHILE.
THEY HAVE WIRELESS COMMUNICATION
SO THEY TALK TO THEIR SHAKE MAP,
AND SO -- AND THEY AUTOMATICALLY
NOTIFY NIH STAFF WHEN CERTAIN
VALUES ARE EXCEEDED.
AND SO IF THERE'S A DRUG GOING G
BY THAT HAS A REALLY MODEST
IMPACT ON THEM, BUT LEGIBLE, IF
YOU WILL, DETECTABLE, IT DOESN'T
SEND OFF -- YOU KNOW, WE DON'T
WANT TO HAVE THE -- WHAT'S THE
EXPRESSION, CRY WOLF.
IT ONLY SENDS US AN AUTOMATED
MESSAGE.
NOW WE CAN -- AND I ASKED MY
STAFF TO DO THIS, WE CAN
PROACTIVELY GO TO THE MONITORS
THROUGH THE WEB AND VERIFY THAT
THEY'RE FUNCTIONING.
AND WHEN THE EARTHQUAKE OCCURRED
IN ROCKVILLE, I SAID, HEY,
PLEASE LOOK AT THE DATA AND SEE
IF INDEED THEY REGISTERED
SOMETHING, AND THEY DID.
ALTHOUGH WELL SHORT OF THE
ACTIONABLE LEVEL.
SO THEY'RE FUNCTIONING, AND WE
INTEND ON SUSTAINING THEM
FOREVER.
DOES THAT HELP, SIR?
>> NO, IT DOES BECAUSE I WONDER
HOW THEY TIED IN TO THE
EMERGENCY MANAGEMENT PLAN FOR
THE CLINICAL CENTER AND
POTENTIALLY ELSEWHERE ON NIH.
>> SO WE HAD A CHANCE A FEW
WEEKS AGO TO BRIEF PIUS AND TO
BRIEF ROXANNE BENDETTI, WHO'S
THE NEW EMERGENCY MANAGER,
BECAUSE WE WANT TO MAKE SURE
THAT WE ALL UNDERSTAND THIS
CAPABILITY, AND SO I BELIEVE NOW
WE'VE GOT ALL THE STAKEHOLDERS
KNOWLEDGEABLE ABOUT THIS
IMPORTANT CAPABILITY SO THAT IF
IT HAPPEN, WE'RE NOT --
CERTAINLY NOT STANDING ON THE
STEPS OF BUILDING 1 WITH
BLACKBERRIES LIKE I WAS IN 2011.
>> DR. DEVASKAR.
>> THANK YOU.
THANK YOU SO MUCH FOR THAT.
IT'S JUST A LOT OF WORK AND I'M
APPRECIATIVE.
COMING FROM THE WEST COAST, WE
HAVE TO HAVE EVERY BUILDING,
EVERY GENERATOR MEET EARTHQUAKE
CODES OVER HERE, SO THE COST OF
CONSTRUCTION OR EVEN HAVING AN
INDEPENDENT GENERATOR FOR
EMERGENCY PURPOSES FOR THE
HEALTH SYSTEM OR HOSPITALS ARE
EXORBITANT, AND I JUST WONDERED
IF THAT IS AFFECTING THE COST OF
CONSTRUCTION IN WASHINGTON, D.C.
>> SO THAT'S A QUESTION THAT I
THINK I'LL HAVE TO GET BACK TO
YOU ON.
I CAN SAY, HAVING CONFIRMED
EARLIER TODAY THAT THE SRLM
ADDITION HAS BEEN DESIGNED FOR A
HIGHER LEVEL OF SEISMIC
PREPAREDNESS THAN THE CRC,
BECAUSE OF THE EVOLUTION OF THE
STANDARDS.
THE EMERGENCY GENERATORS THAT
ARE GOING TO BE PROVIDED, I
THINK ARE SUBJECT TO THE SAME
CRITERIA, BUT I'D LIKE TO GET
BACK TO CONFIRM THAT.
I ALSO KNOW THAT IN THE SRLM,
THERE IS A SIGNIFICANT
INVESTMENT IN PROPERLY
SUPPORTING UTILITIES SO THAT IF
THEY EXPERIENCE THAT SAME TYPE
OF ACCELERATION THAT THEY'RE
PROPERLY SUPPORTED AND YOU DON'T
HAVE PIPES OPENING UP AND
RUPTURING.
SO A SUBSTANTIAL INCREASE IN
COST WAS INCURRED.
BUT I SHOULD ALSO ADD THAT I AM
CONFIDENT THAT WHILE WE'VE
INVESTED FOR SEISMIC
PREPAREDNESS IN BETHESDA, THE
STANDARDS OR THE REQUIREMENTS
AROUND AS HIGH AS THOSE ON THE
WEST COAST.
SO I BELIEVE WHAT I'M GOING TO
BE BRINGING BACK TO YOU IS THE
COSTS WERE SUBSTANTIAL BUT NOT
EX-HOR BANT TO MAKE SURE THAT
EARTHQUAKE PREPAREDNESS WAS
FACTORED IN.
I'LL GET BACK TO YOU AS SOON AS
I CAN.
>> THANK YOU.
>> THANKS, DAN.
REALLY APPRECIATE IT.
THANK YOU, WELL DONE, AND THANKS
TO YOUR TEAM AS WELL.
SO WE ARE NOW AT THE OPEN
DISCUSSION, IF THERE'S ANYTHING
THAT THE BOARD WOULD LIKE TO
DISCUSS, THE FLOOR IS OPEN.
HERE AT NIH, WE TRAIN TO
STANDARD AND NOT TO TIME SO
WE'RE A LITTLE BIT AHEAD OF TIME
AND THAT'S AN OKAY THING.
IF NOT, OKAY.
WELL, THANK YOU ALL.
YES, TONI, GO AHEAD.
>> DR. GILMAN, YOU MENTIONED
THAT THE PRESIDENT HAD SIGNED
SOMETHING REGARDING THE WOMAN'S
HEALTH RESEARCH.
OR WAS THAT --
>> DR. TABAK DID.
>> CAN YOU FILL ME IN ON IT?
>> IT IS -- SO I WOULD SAY WHEN
THE PRESIDENT SIGNED SOMETHING,
IT'S AT A VERY HIGH LEVEL AND
THERE AREN'T A LOT OF DETAILS,
AND IT WAS REALLY -- RIGHT NOW
WHAT HAS GONE ON IS SORT OF A
ROUNDUP OF WHAT'S ALREADY GOING
ON, AND TRYING TO DETERMINE THE
GAPS BETWEEN WHAT WE NEED AND
WHAT WE'RE WORKING ON ALREADY TO
SEE WHAT ADDITIONAL INITIATIVES
WOULD BE FUNDED.
BUT IT'S NOT NIH-SPECIFIC, IT'S
NOT CLINICAL CENTER-SPECIFIC BY
ANY STRETCH.
IT IS REALLY AT A VERY HIGH
NATIONAL LEVEL.
>> ANY OTHER QUESTIONS OR
DISCUSSION?
IF NOT, THANK YOU ALL VERY MUCH
FOR A GREAT MEETING, AND I JUST
WANT TO SAY PERSONALLY, YOU
ANNOUNCED MY RETIREMENT, SO
REALLY THANKS TO NIH.
BY VUR TEBY VIRTUE OF BEING ON D
I'M ABLE TO MAINTAIN MY SEAT ON
THE AMERICAN HOSPITAL
ASSOCIATION SO THANK YOU VERY
MUCH FOR THAT, IT'S VERY GOOD TO
BE PART OF THE NIH.
OUR NEXT MEETING WILL BE ON
FRIDAY, THE 21ST OF JUNE AT 9:0,
SO THIS IS PRESIDENT'S DAY
WEEKEND.
FOR SOME IT'S A LONG FOUR-DAY
WEEK END.
SO WISHING EVERYONE A SAFE
HOLIDAY WEEK AHEAD AND IF YOU'RE
STAYING AROUND THE AREA, BEWARE,
WE'RE ON SNOW ALERT FOR
TOMORROW.
THAT MAY PARALYZE D.C. SO WHO
KNOWS.
SO ANYWAY, I'D LIKE TO GO AHEAD
AND FORMALLY ADJOURN THE
MEETING.
THANK YOU VERY MUCH, GOD BLESS
YOU ALL. 5220 03:04:44,673 THANK YOU.