GOOD MORNING, EVERYONE. I'M DR. COOTS, I WOULD LIKE TO
CALL THIS BOARD MEETING TO
ORDER.
TODAY MARKS OUR 25th MEETING.
WE WELCOME BOARD MEMBERS
ATTENDING TODAY.
WE HAVE JOINING US IN PERSON
MR. DAVID BAUM, MS. ROYSTER IS
ON THE WAY MR. LACK JESSLY,
STEPHANIE REEL AND DR. NINA
SCHOR.
PARTICIPATING VIA ZOOM DR. CHEN,
DR. CUNNINGHAM, DR. DEVASKAV,
PRICELAG AND STEVE GOLDSTEIN.
WE APPRECIATE HAVING YOU FOR
WHATEVER TIME YOU'RE AVAILABLE
TO GIVE US TODAY.
AS ALWAYS, I'D LIKE TO WELCOME
DOCTORS TABAK AND SCHWETZ IN
PERSON, ALONG WITH MANY OTHER
LEADERS ATTENDING VIA ZOOM.
WE WELCOME COLLEAGUES FROM THE
NIH COMMUNITY AND MEMBERS OF THE
PUBLIC WHO ARE JOINING US IN OUR
LIVE VIDEOCAST SESSION.
I DO HAVE ONE ADMINISTRATIVE
UPDATE, CURRENT CCRH CHARTER WAS
AMENDED RECENTLY AND RECEIVED BY
BOARD MEMBERS EARLIER THIS WEEK
WITH OUR MEETING MATERIALS.
THE AMENDED CHARTER WILL BE
POSTED ON OUR WEBSITE SOON,
MAJOR CHANGE INVOLVED BOARD
FINANCES SO ANNUAL OPERATING
COSTS WILL SUPPORT HONORARIUM
FOR MEMBERS AT MEETINGS
BEGINNING WITH THIS ONE.
I WANT TO TAKE A MOMENT TO
ACKNOWLEDGE THE EXTRAORDINARY
AND ALMOST INCOMPREHENSIBLE
TIMES WE FIND OURSELVES LIVING,
WAR BETWEEN UKRAINE AND RUSSIA
AND FOR TWO WEEKS WATCHING THE
WAR BETWEEN ISRAEL AND HAMAS.
THE PRESIDENT SPOKE TO THE
NATION, AS A FEDERAL BOARD HE
SPEAKS FOR US.
WAR HAS NO WINNERS, ONLY
SURVIVORS.
LET US ALL PRAY FOR PEACE.
AND WITH THAT, I'D LIKE TO GO
AHEAD AND TRANSITION AND MOVE
INTO OF THE MEETING.
WELCOME, DR. TABAK.
WE'LL BEGIN WITH YOUR SLIDES AND
PRESENTATION AND LOOK FORWARD TO
YOUR UPDATE.
>> THANK YOU SO VERY MUCH.
WELCOME HERE IN THE ROOM AND
VIRTUALLY.
25 MEETINGS, WOW.
TIME FLIES.
IF I COULD HAVE THE NEXT SLIDE
PLEASE.
OKAY.
WHAT I'D LIKE TO COVER THIS
MORNING ARE THESE FOUR TOPICS.
A QUICK UPDATE ON SOME
LEADERSHIP CHANGES.
WE ARE IN THE MIDST OF
CONTEMPLATING CHANGES TO THE NIH
MISSION STATEMENT.
I WANTED TO BRING THAT TO THE
BOARD'S ATTENTION.
I ALSO WANTED TO PROVIDE YOU
WITH AN UPDATE ABOUT NIH EFFORTS
TO ADDRESS LONG COVID, BOTH IN
TERMS OF SOME EXTRAMURAL
ACTIVITIES AS WELL AS A QUICK
OVERVIEW OF SOME INTRAMURAL
RESEARCH, ALTHOUGH DR. SCHOR
COULD CERTAINLY AMPLIFY ON ANY
OF THAT.
AND THEN FINALLY, JUST TO ALERT
YOU TO CHANGES TO PEER REVIEW
CRITERIA FOR EXTRAMURAL GRANTS,
ONLY BECAUSE SOME OF YOU ARE
HOME BASED COLLEAGUES WHO MAY
QUESTION WHAT'S GOING, WE WANTED
YOU TO HAVE AN OPPORTUNITY TO
HEAR ABOUT THIS, THAT
INFORMATION WENT LIVE YESTERDAY.
IF I COULD HAVE THE NEXT SLIDE
PLEASE.
AGAIN, NEXT.
SO, I THINK AS YOU ALL KNOW, OUR
NOMINEE FOR THE NIH
DIRECTORSHIP, DR. MONICA
BERTAGNOLLI, CURRENTLY THE
DIRECTOR OF THE NATIONAL CANCER
INSTITUTE, HAD HER HEARING AT
THE SENATE HEALTH COMMITTEE THIS
PAST WEDNESDAY.
THE HEARING WENT VERY WELL.
THE CHAIR OF THE COMMITTEE,
SENATOR SANDERS, INDICATED THAT
THE COMMITTEE WILL VOTE ON THE
NOMINATION NEXT WEDNESDAY, THE
25th OF OCTOBER.
AND OF COURSE OUR HOPE IS THAT
THINGS WILL PROCEED VERY
SMOOTHLY, CULMINATING IN SENATE
CONFIRMATION.
AGAIN, WE HOPE SOMETIME IN EARLY
NOVEMBER.
AND OBVIOUSLY, WE'RE ALL LOOKING
FORWARD TO DR. BERTAGNOLLI'S
TENURE AS NIH DIRECTOR.
NEXT PLEASE.
WE HAVE A NEW DIRECTOR OF THE
NATIONAL INSTITUTE OF ALLERGY
AND INFECTIOUS DISEASES.
DR. JEANNE MARRAZZO FROM
UNIVERSITY OF ALABAMA AT
BIRMINGHAM WHERE SHE HEADED THE
INFECTIOUS DISEASE DIVISION.
SHE IS NOW HERE, HAS HIT THE
GROUND RUNNING.
AND I THINK WILL PROVE TO BE AN
OUTSTANDING LEADER OF NIAID.
IF WE COULD HAVE THE NEXT SLIDE
BEFORE.
I SHOULD SAY WE NEED TO THANK
THE ACTING DIRECTOR.
IT IS NO FUN, I CAN TELL YOU
THAT.
THANKS TO DR. AUCENCLASS FOR
THAT SERVICE.
ON A POSITIVE NOTE, I'M SORRY TO
SAY DR. PATRICIA BRENNAN IS
RETIRED FROM NIH.
PATTI WAS DIRECTOR OF THE
NATIONAL LIBRARY OF MEDICINE BUT
EMERGED AS AN NIH LEADER IN THE
DIGITAL WORKSPACE, IF YOU WILL.
SOME OF US REMEMBER LIBRARIES
WITH DUSTY SHELVES AND BOOKS AND
MICROFICHE AND OTHER INTERESTING
CONTRAPTIONS.
OBVIOUSLY, TODAY'S LIBRARY IS
ALL DIGITAL, AND PATTI IS REALLY
A THOUGHT LEADER IN THIS PART OF
SCIENCE.
AN EVER-INCREASING IMPORTANT
PART OF SCIENCE AND HELPED GUIDE
US IN A NUMBER OF STRATEGIC
WAYS.
SHE WILL BE MISSED GREATLY.
NEXT PLEASE.
SO, DR. STEPHEN SHERRY DREW THE
SHORT STRAW AND WILL BE ACTING
DIRECTOR OF NLM.
STEVE IS WELL KNOWN TO MANY
PEOPLE IN RESEARCH COMMUNITY,
CURRENTLY HEADS THE NCBI, WHICH
IS THE LARGEST REPOSITORY OF
GENOMIC DATA IN THE WORLD, I
GUESS.
AND HE'S GRACIOUSLY AGREED TO
STEP IN WHILE WE PUT TOGETHER A
SEARCH AND SO FORTH.
NEXT PLEASE.
LAUREN HIGGINS, ACTING DIRECTOR
OF THE LEGISLATIVE POLICY AND
ANALYSIS OFFICE, IS VERY HAPPY
TODAY, BECAUSE THIS IS HER LAST
DAY AS ACTING DIRECTOR, AS KATE
KLIMCZAK WILL BE JOINING MONDAY
AS NEW ASSOCIATE DIRECTOR FOR
LEGISLATIVE POLICY AND ANALYSIS,
SHE COMES FROM THE FDA BUT
ACTUALLY HAD BEEN AT NIH FOR A
TIME PRIOR TO THAT SO WE'VE
STOLEN HER BACK IN THE FDA.
THIS HAPPENS ALL THE TIME AMONG
SIBLING ORGANIZATIONS IN HHS BUT
WONDERFUL TO HAVE KATE REJOINING
NIH.
NEXT PLEASE.
ALSO, I'D LIKE TO LET YOU KNOW
THAT WE'VE RECENTLY APPOINTED A
NEW DIRECTOR OF THE OFFICE OF
NUTRITION RESEARCH, DR. ANDREW
BREMER.
DREW IS AN EXPERT IN THIS
DOMAIN.
THIS IS SOMETHING THAT FRANKLY
NEEDS A REFRESH AT NIH.
WE THINK THERE'S MUCH MORE THAT
CAN BE DONE IN THIS SPACE,
SOMETHING THAT ACTUALLY CAME UP
AT DR. BERTAGNOLLI'S HEARING ON
WEDNESDAY ABOUT THE NEED TO DO
MORE IN NUTRITIONAL SCIENCE.
AND WE'RE VERY GRATEFUL FOR DREW
TO ACCEPT THE PERMANENT
POSITION.
THIS OFFICE IS LOCATED WITHIN
WHAT WE FINALLY REFER TO AS
DPCPSI, A VERY LARGE DIVISION
WITHIN THE OFFICE OF THE
DIRECTOR, AND IT INCLUDES
STRATEGIC PLANNING AND RESEARCH
EFFORTS AND OTHER ORGANIZATIONS
IN THERE THAT YOU MIGHT KNOW AS
OFFICE OF RESEARCH ON WOMEN'S
HEALTH AND OFFICE OF AIDS
RESEARCH AND SO FORTH.
THERE ARE MANY -- I THINK IT'S
14 OFFICES.
SO DREW WILL BE THE DIRECTOR OF
THE OFFICE OF NUTRITION
RESEARCH.
NEXT PLEASE.
SO, I'D LIKE TO NOW GO TO THE
NEXT TOPIC, THANKED IS ABOUT THE
NIH MISSION STATEMENT.
AND THE SUBPLOT OF THIS IS WORDS
MATTER.
SO IF I COULD HAVE THE NEXT
SLIDE PLEASE.
ON YOUR LEFT IS THE CURRENT NIH
MISSION STATEMENT.
I THINK MANY OF ARE YOU FAMILIAR
WITH THIS.
THE MISSION IS TO SEEK
FUNDAMENTAL KNOWLEDGE ABOUT THE
NATURE AND BEHAVIOR OF LIVING
SYSTEMS, AND APPLICATION OF THAT
KNOWLEDGE TO ENHANCE HEALTH,
LENGTHEN LIFE, REDUCE ILLNESS
AND DISABILITY.
WE'VE HIGHLIGHTED TO ENHANCE
HEALTH AND LENGTHEN LIFE AND
REDUCE ILLNESS AND DISABILITY
FOR THE FOLLOWING REASONS.
FIRST, MANY PEOPLE HAVE POINTED
OUT TO US THAT WE NEVER TALK
ABOUT PREVENTION IN THE MISSION
STATEMENT.
AND THIS SEEMS ODD BECAUSE OF
COURSE SO MUCH OF WHAT WE
UNDERSTAND ABOUT MEDICINE IS THE
NEED TO PREVENT BEFORE DISEASE
BEGINS, AND IT'S OBVIOUSLY THE
BEST WAY OF COMBATING IT.
AND ALSO, MANY MEMBERS OF THE
DISABILITY COMMUNITY WHICH IS A
VERY HETEROGENEOUS COMMUNITY
POINTED OUT TO US THAT FOR SOME,
THEY DON'T REQUIRE A REDRESS OF
THEIR DISABILITY BECAUSE THAT'S
WHO THEY ARE.
I THINK THE BEST WAY I CAN
DESCRIBE THIS IS IN MY
INTERACTIONS WITH PEOPLE FROM
PARTS OF THE DEAF COMMUNITY,
WHEN I WAS IN UNIVERSITY OF
ROCHESTER, OUR NEIGHBORING
INSTITUTION R I.T. IS THE HOME
OF ONE OF THE TWO VERY LARGE
COLLEGES FOR THE DEAF, NTID, AND
INDIVIDUALS THERE REFUSE SUCH
THINGS AS COCHLEAR IMPLANTS
BECAUSE THEY FEEL THAT BEING
DEAF IS PART OF WHO THEY ARE,
AND THEY DON'T NEED TO BE,
QUOTE, FIXED.
THIS IS NOT A UNIVERSAL VIEW BY
ALL MEMBERS OF DISABILITY
COMMUNITIES, IT'S VERY
HETEROGENEOUS.
BUT AT LEAST WE HAVE HEARD A
GREAT DEAL FROM THE INDIVIDUALS
WHO FEEL THIS WAY, AND VIEW OUR
CURRENT STATEMENT AS BEING
ABLEIST.
SO, WE HAVE A PROPOSED REVISION,
AND IT IS PROPOSED.
AND SO THE BEGINNING PART
REMAINS THE SAME BUT IT ENDS
WITH "TO APPLY THAT KNOWLEDGE TO
OPTIMIZE HEALTH AND PREVENT OR
REDUCE ILLNESS FOR ALL PEOPLE."
AND SO, OBVIOUSLY I THINK WHAT
WOULD BE COMPLETELY
NON-CONTENTIOUS IS INSERTING "
PREVENT" BECAUSE HOPEFULLY
EVERYBODY AGREES WITH THAT BUT
WE'VE REMOVED "DISABILITY."
IF I COULD HAVE THE NEXT SLIDE
PLEASE.
AGAIN, WE'VE REMOVED IT FROM THE
DRAFT BECAUSE WE HAVE A REQUEST
FOR INFORMATION OUT NOW INVITING
PUBLIC COMMENT ON OUR MISSION
STATEMENT AND THE PROPOSED
CHANGE.
AND SPECIFIC INFORMATION IS ON
THE LOWER LEFT.
THIS IS OPEN UNTIL NOVEMBER 24.
WE HAVE ALREADY RECEIVED A GREAT
DEAL OF FEEDBACK.
AGAIN, NOT TO BIAS THINGS IN ANY
WAY, ONE WAY OR THE OTHER, THUS
FAR MOST PEOPLE FEEL THAT THE
REVISION IS A REASONABLE ONE,
BUT, AGAIN, WE NEED TO ALLOW
THIS TO RUN THE FULL COURSE AND
GET AS MANY PEOPLE'S INPUT AS
POSSIBLE.
SO I WANTED TO ALERT YOU TO ALL
OF THIS.
SOMEBODY MAY ASK YOU ABOUT THIS.
YOU YOURSELF MAY HAVE VIEWS ON
THIS.
AND CERTAINLY WE ARE VERY
INTERESTED IN ANY FEEDBACK,
EITHER YOU OR ANY COLLEAGUES
THAT YOU HAVE, ARE WILLING TO
OFFER.
IF I COULD HAVE THE NEXT SLIDE
PLEASE.
I'D LIKE TO TOUCH UPON EFFORTS
NIH IS TAKING WITH REGARD TO
LONG COVID.
NEXT PLEASE.
SO, WITHIN THE EXTRAMURAL SPACE,
NIH HAS A MULTI-FACETED PROGRAM
OF ACRONYM OF WHICH IS
"ReCOVer," RESEARCHING COVID
TO ENHANCE RECOVERY.
THE GOAL AS I'M SURE YOU CAN
FIGURE OUT WOULD BE TO
UNDERSTAND LONG COVID, ALLOW US
TO BE ABLE TO PREDICT, TREAT,
AND PREVENT THIS.
THE SCIENTIFIC AIMS ARE ON THE
LEFT.
REALLY TO UNDERSTAND THE
BIOLOGY, DEFINE RISK FACTORS,
UNDERSTAND HOW THE DISEASE
PROGRESSES, AND IT'S A VERY
HETEROGENEOUS SET OF CONDITIONS
INDEED.
AND THEN OBVIOUSLY TO IDENTIFY
THE INTERVENTIONS TO TREAT AND
PREVENT THIS.
NOW, THE PRINCIPLES THAT HAVE
BEEN GUIDING THIS EFFORT ARE
OUTLINED ON THE RIGHT-HAND SIDE
OF THE SLIDE.
THIS IS, I BELIEVE, ONE OF THE
MOST PATIENT-CENTRIC STUDIES NIH
HAS EVER EMBARKED ON.
THE PARTICIPANTS ARE VIEWED AS
OUR TRUE PARTNERS.
THEY ARE ENGAGED WITH US AS WE
DEFINE AND DEVELOP PROTOCOLS.
WE DEBATE THE METHODOLOGIES IN
CERTAIN INSTANCES.
MANY OF THE PATIENTS AND/OR
THEIR ADVOCATES ARE EXPERTS AND
HAVE MUCH TO BRING TO THE TABLE
IN THIS DISCUSSION.
AND THE OTHER PART OF THIS IN
TERMS OF GUIDING PRINCIPLES IS
THAT WE'RE APPROACHING THIS WITH
AN ADAPTIVE PLATFORM, MEANING
THAT IF SOMETHING EMERGES THAT
HAD NOT BEEN ANTICIPATED, THIS
PLATFORM AND I'LL SHARE WITH YOU
IN A MOMENT IT'S A SERIES OF
NESTED STUDIES, IS FLEXIBLE
ENOUGH SO THAT WE CAN TAKE ON
NEW APPROACHES BASED UPON ANY
EMERGENT SCIENCE.
AND NEW THINGS ARE BEING LEARNED
ALL THE TIME.
JUST EARLIER THIS WEEK, THERE
WAS A RATHER COMPLEX PUBLICATION
IN "CELL," SUGGESTING THAT
LEVELS OF SEROTONIN MAY HAVE
SOME UNDERLYING INVOLVEMENT, AT
LEAST FOR SUBSET OF PATIENTS.
AND THAT SEEMS TO BE A COMMON
THEME.
WE FIND THINGS, BUT THEY APPEAR
TO RELATE TO ONLY SUBSETS OF
PATIENTS AND NOT EVERYBODY.
NOW, TRUTHFULLY, THIS TYPE OF
CONDITION IS NOT NEW.
POST SEQUELAE OF VIRAL
INFECTIONS HAVE BEEN KNOWN FOR A
LONG, LONG TIME, BUT IN THIS
INSTANCE WE MAY KNOW MORE ABOUT
THIS THAN ANY OTHER VIRAL
INFECTION IN THE PAST.
NOW, OF COURSE, THE VIRUS IS NOT
THE SAME VIRUS AS THE ANCESTRAL
STRAIN.
IT'S BEEN MUTATING.
SO WE HAVE MOVING TARGETS, AND
WE HAVE TO ADAPT TO
UNDERSTANDING WHAT IS HAPPENING
IN TERMS OF PATIENT RESPONSE TO
THE VIRUS, DIFFERENT VIRUSES
ALONG THE WAY, AND SO FORTH.
SO IF I COULD HAVE THE NEXT
SLIDE PLEASE.
OH, IF YOU -- WHAT IS IT?
IT'S POST-ACUTE -- I DON'T
REMEMBER.
I HATE ACRONYMS.
DOES ANYBODY KNOW?
DO YOU KNOW?
POST-ACUTE SEQUELAE -- I'M
SORRY, I'LL LOOK IT UP, I'LL
FIND IT.
SEQUELAE OF COVID.
THANK YOU.
IT'S BEEN DECODED BY DR. SCHOR,
THANK YOU.
I CALL IT LONG COVID BUT YES,
PASSING IS POST -- -- PASC
IS -- RIGHT, APOLOGIES FOR NOT
DEFINING IT.
THIS OF COURSE IS I THINK
SELF-EVIDENT.
THE APPROACH REQUIRES A
MULTI-DISCIPLINARY APPROACH,
VIRTUALLY EVERY ORGAN SYSTEM IN
THE BODY HAS BEEN AFFECTED, BEEN
REPORTED TO BE AFFECTED.
NOT EVERYBODY SYSTEM AFFECTED IN
EVERY PATIENT, BUT RATHER THERE
ARE SUBSETS OF SYSTEMS THAT
APPEAR TO BE AFFECTED.
SOME MAY RELATE TO WHICH VARIANT
YOU WERE INFECTED WITH, IN PART
NO DOUBT RELATES TO HOW YOUR OWN
BODY RESPONDS, FOR EXAMPLE, HOW
YOUR IMMUNE SYSTEM RESPONDS, SO
WE NEED TO DEAL WITH A VERY WIDE
RANGE OF THINGS.
NEXT PLEASE.
SO, WE NOW HAVE FIVE CLINICAL
TRIALS PLANNED, TWO OF WHICH ARE
ALREADY ENROLLING, THE FIRST TO
TEST WHETHER OR NOT REDUCTION OF
VIRAL LOAD CAN PLAY A ROLE IN
RECOVERY.
THE SECOND, TO ASCERTAIN
APPROACHES TO DEAL WITH SOME OF
THE NEUROLOGICAL AND COGNITIVE
DYSFUNCTIONS THAT HAVE BEEN
REPORTED.
YET TO START ENROLLING BUT WILL
BE ENROLLING SOON ARE EFFORTS TO
SEE IF WE CAN INTERVENE FOR THE
VARIOUS AUTONOMIC DYSFUNCTIONS
THAT ARE REPORTED, THE SLEEP
DISORDERS THAT HAVE BEEN
REPORTED, AND FINALLY ISSUES
RELATED TO EXERCISE AND
TOLERANCE.
THE LAST CATEGORY OF EFFORT IS
THE ONE THAT SOME PATIENTS AND
THEIR ADVOCATES ARE PARTICULARLY
CONCERNED ABOUT.
THE SIMILARITIES BETWEEN LONG
COVID AND CHRONIC FATIGUE
SYNDROME ARE QUITE APPARENT.
AND AT LEAST IN A SUBSET OF
CHRONIC FATIGUE SYNDROME
PATIENTS, EXERCISE CAN WORSEN
THEIR CONDITION.
AND SO THEY HAVE EXPRESSED
CONCERN ABOUT THIS.
OTHER EXPERTS HAVE INDICATED
THAT SUPERVISED EXERCISE CAN BE
POTENTIALLY BENEFICIAL, AND SO
WE'RE WORKING WITH A NUMBER OF
GROUPS TO COME UP WITH THE
CORRECT APPROACH FOR THIS LAST
CATEGORY.
NEXT PLEASE.
I'LL JUST FLIP THROUGH THE
INTRAMURAL EFFORT QUICKLY, WE
WANT YOU TO KNOW THE INTRAMURAL
PROGRAM IS ENGAGED.
PLEASE, NINA, IF THERE'S
COMMENTARY WOULD YOU LIKE TO
ADD, JUMP IN.
NEXT PLEASE.
THERE'S A LONGITUDINAL STUDY BY
NIAID THAT'S BEEN ONGOING SINCE
JUNE OF 2020.
AND THESE ARE IMPORTANT BECAUSE
WE'RE GETTING A SENSE OF HOW THE
DISEASE PROGRESSES.
HIGH BURDEN OF PERSISTENT
SYMPTOMS BUT AS OF NOW, NO
SPECIFIC CAUSE.
THERE'S A COVID ARC STUDY, THEY
WROTE OUT THE ACRONYM, ACUTE,
RECOVERY, CONVALESCENS STUDY.
THE HOPE IS IF YOU LOOK AT THE
MOST SEVERE YOU GAIN SOME
INSIGHT.
NEXT PLEASE.
AGAIN, ONE STUDY HAS ASKED ARE
THERE ASSOCIATIONS BETWEEN
NEUROLOGIC SYSTEMS AND
STRUCTURAL CHANGES IN THE BRAIN.
NINA, YOU SHOULD BE TALKING
ABOUT THE BRAIN, NOT ME.
IF YOU COULD SEE IN THE LOWER
LEFT, THERE ARE A NUMBER OF
POST-COVID SYMPTOMS IN PATIENTS.
THEY LOOKED AT ABOUT 100 FOLKS,
TOGETHER WITH IMAGING STUDIES.
AND INTERESTINGLY, THE PLASMA
PROTEIN PROFILE IS QUITE
ALTERED, AND, AGAIN, I GUESS
MAYBE THAT SHOULDN'T BE
SURPRISING FOR AN INFECTIOUS
PROCESS BUT MAYBE THERE ARE SOME
CLUES THERE THAT COULD SERVE
ULTIMATELY AT BIOMARKERS, FOR
EXAMPLE.
AND YET AFTER NINE MONTHS AFTER
COVID, FOLKS WITH NO PULMONARY
SYMPTOMS, YOU KNOW, DIDN'T SHOW
CHANGES IN THIS.
SO, AGAIN, ALL OF THIS JUST
UNDERSCORES THE TREMENDOUS
HETEROGENEITY THAT WE'RE
OBSERVING IN THESE PATIENTS.
NEXT PLEASE.
AND, AGAIN, NINDS HAS BEEN DOING
AN OBSERVATIONAL STUDY WITH
INDIVIDUALS WHO HAVE PERSISTENT
NEUROLOGIC SYMPTOMS.
THEY HAVE ALSO STUDIED THE
BRAINS OF INDIVIDUALS WHO HAVE
DIED, AND HAVE SHOWN DAMAGE TO
THE BRAIN THAT THEY BELIEVE IS
CAUSED BY INFLAMMATION,
ESPECIALLY AROUND BLOOD VESSELS,
AND NIAAA AND NINR HAVE BEEN
LOOKING AT THE OLFACTORY
IMPAIRMENT THAT IS ASSOCIATED
WITH A MORE LASTING SET OF
SYMPTOMS.
SO, AGAIN, VERY HETEROGENEOUS
BUT WE WILL EVENTUALLY MAKE
SENSE OUT OF THIS, WITH THE
EXTRAMURAL EFFORTS AND
INTRAMURAL EFFORTS.
LET ME JUST PAUSE.
NINA, ANYTHING TO ADD THAT YOU
THINK WOULD BE HELPFUL?
>> YEAH, I THINK THE ONLY THING
TO UNDERSCORE THE HETEROGENEITY
YOU TALK ABOUT IS IN SOME
PATIENTS WHO CAN ACTUALLY
IDENTIFY THAT VIRUS PERSISTS IN
THE CENTRAL NERVOUS SYSTEM AND
IN MOST PATIENTS YOU DON'T FIND
PERSISTENCE OF THE VIRUS BUT YOU
FIND AS YOU MENTIONED THE
VASCULITIY CHANGES, AND
SYMPTOMOLOGYICALLY THOSE
PATIENTS CAN LOOK THE SAME.
AND SO IT'S A REAL CHALLENGE .
>> THANK YOU.
THIS SHOWS THE VALUE OF DOING
THINGS INTRAMURALLY AND
EXTRAMURALLY.
THE INTRAMURAL CAN PIVOT
RAPIDLY, LONG-TERM STUDIES MORE
EASILY, SO THERE ARE MANY
ADVANTAGES TO HAVING RESEARCH
CONDUCTED IN THE EXTRAMURAL
COMMUNITY AND INTRAMURALLY.
IF I COULD HAVE THE NEXT SLIDE
PLEASE.
I'M GOING TO FINISH WITH CHANGE
TO PEER REVIEW CRITERIA IN CASE
SOMEBODY ASKS YOU ABOUT THAT.
AND SO IF I COULD HAVE THE NEXT
SLIDE PLEASE.
OUR CURRENT GRANT REVIEW
CRITERIA SCORES EACH APPLICATION
BY FIVE DIFFERENT CRITERIA.
THAT IS, THERE'S AN INDIVIDUAL
SCORE PROVIDED BY STUDY SECTION
MEMBERS, ON THE SIGNIFICANCE OF
THE WORK, INVESTIGATORS
CONDUCTING THE WORK, INNOVATION
OF THE WORK, APPROACH OF THE
WORK, AND THEN THE ENVIRONMENT
IN WHICH THE WORK IS TO BE
CONDUCTED.
WE'RE CHANGING THIS NOW SO THAT
ONLY FACTORS 1 AND 2 ARE GOING
TO BE SCORED.
THE IMPORTANCE OF THE WORK AND
RIGOR AND FEASIBILITY.
NOT SCORED BUT EVALUATED FOR
SUFFICIENCY ONLY WILL BE THE
INVESTIGATORS AND THE
ENVIRONMENT.
IN OTHER WORDS, THE REPUTATION
OF THE INVESTIGATOR AND
REPUTATION OF THE ORGANIZATION
THAT THEY WORK SHOULDN'T
CONTRIBUTE TO THE SCORE.
IT'S EITHER ADEQUATE OR NOT
ADEQUATE.
WHAT WE HAVE FOUND OVER THE
YEARS IS THAT EITHER ON PURPOSE
BUT MORE OFTEN THAN NOT IN A
SORT OF NOT-REALIZING FASHION
PEOPLE WERE PROVIDING FOR WEIGHT
TO THE FACT THAT SOMEBODY IS
FAMOUS OR THE INSTITUTION THAT
THEY WORK AT IS FAMOUS.
CENTRIFUGES WORK JUST AS WELL AT
CITY COLLEGE OF NEW YORK AS THEY
DO AT HARVARD.
I REALLY DO BELIEVE THAT.
SO, THIS NEW FRAMEWORK WILL
START, STARTING JANUARY 25th,
2025, OVERWHELMINGLY THE
RESEARCH COMMUNITY IS VERY
PLEASED WITH THIS.
WE'VE DONE EXTENSIVE OUTREACH ON
THIS.
SO STAY TUNED.
AND WITH THAT I APOLOGIZE FOR
BEING A LITTLE OVER, BUT I WILL
STOP THERE AND TURN IT BACK TO
THE CHAIR.
>> THANKS VERY MUCH, DR. TABAK.
REALLY APPRECIATE THAT
PRESENTATION TODAY.
ALL RIGHT.
NEXT UP WE'LL HAVE THE
PRESENTATION OF THE CLINICAL
CENTER CEO, DR. GILMAN.
>> THANK YOU.
THANKS TO ALL OF YOU FOR BEING
HERE.
IT'S BAD WHEN YOU START WITH NO
VOICE.
OKAY.
HERE WE GO.
AGAIN, THANKS FOR BEING HERE.
LET'S GO TO THE NEXT SLIDE AND I
DO WANT TO ACKNOWLEDGE A COUPLE
ACCOMPLISHMENTS OF OUR CHAIR,
DR. COOTS IS NOW A MEMBER OF THE
AMERICAN HOSPITAL ASSOCIATION TO
THE BOARD OF TRUSTEES AND WAS
RECOGNIZED BY BECKER'S HEALTH
CARE AS ONE OF THE TOP PHYSICIAN
LEADERS IN THE COUNTRY, SO IN
THESE ACCOMPLISHMENTS HE BRINGS
FURTHER ACKNOWLEDGMENT AND
GRAVITAS TO OUR BOARD AND WE'RE
GRATEFUL FOR THAT.
AFTER A COUPLE YEARS WE FINALLY
HAVE A CHIEF NURSING OFFICER,
DR. JORDAN ASCENDED TO THIS
POSITION IN JULY 2023, SHE HAD
BEEN DOING THE WORK TWO YEARS
BEFORE WE COULD REMOVE THE
"ACTING" FROM THE TITLE.
AND I WON'T -- WE'RE GLAD THAT
THE TWO YEARS OF WAITING IS
FINALLY OVER.
WE SAW SOME RECOGNITION DURING
THE SEARCH PROCESS THAT THE
DEPARTMENT WAS BEGINNING TO
BETTER UNDERSTAND THE IMPORTANCE
OF NURSE EXECUTIVES AND NURSE
LEADERS, WITH SOME CHANGES OR
PROPOSED CHANGES AND POLICIES
RELATED TO COMPENSATION AND
OTHER ISSUES, BUT WE'RE VERY
GLAD THAT WE HAVE BARBARA
PERMANENTLY INSTALLED HERE NOW.
NEXT SLIDE.
WE'VE HAD SOME VERY GOOD
CLINICAL CENTER GRAND ROUNDS
PRESENTATIONS.
I WENT OVER IN THE PAST, THE
ADVANCES WE MADE AND MEDICAL
SIMULATION PROGRAM AND HOW
IMPORTANT SIMULATION IS TO A
HOSPITAL WHERE ALMOST EVERYTHING
IS PLANNED IN ADVANCE, SO YOU
CAN ACTUALLY PRACTICE, YOU CAN
ACTUALLY SIMULATE, BUT SO MANY
THINGS ARE SORT OF LOW VOLUME,
HIGH COMPLEXITY, AND THEREFORE
KIND OF HIGH RISK.
AND SO SIMULATION IS VERY
IMPORTANT.
SO DURING HEALTHCARE SIMULATION
WE DID HAVE PRESENTATION BY DR.
MARY FEY, PRINCIPAL FACULTY,
ACADEMIC NURSE CONSULTANT AT
HARVARD CENTER FOR MEDICAL
SIMULATION.
I LEARNED A LOT MORE ABOUT BEES
THAN I KNEW BEFORE.
TURNS OUT THAT BEES ARE SORT OF
HAVE AN INTERESTING PARADIGM TO
THE KIND OF LEARNING THAT TAKES
PLACE DURING SIMULATION.
ONE OF OUR FACULTY MEMBERS, A
CRITICAL CARE MEDICINE DOCTOR,
WHO HAS BEEN IN THE SIMULATION
WORLD LONG AND DEEP FOR AN
EXTENDED PERIOD OF TIME ASKED
THE QUESTION ABOUT HOW, YOU
KNOW, ABOUT DEALING WITH PEOPLE
WORLD RENOWNED EXPERTS AND COME
TO THE SIM LAB AND THEY ARE NOT
SURE WHY THEY ARE THERE, WHY
THEY HAVE TO DO THAT.
AND SO THE HIGHLIGHTED QUOTE
THERE I THOUGHT WAS HER
RESPONSE, AND WAS A GOOD LESSON
FOR ALL OF US, AND WE ALL SHOULD
GET UP AND GO TO THE SIM LAB
WITH THE IDEA WE'RE GOING TO
LEAVE AT LEAST 1% BETTER.
YOU COULD TAKE SIM LAB OUT AND
ADD THE CEO OFFICE AND DO THE
SAME THING.
I VERY MUCH ENJOYED THAT
PRESENTATION.
BY THE WAY, YOU CAN WATCH -- WE
CAN MAKE IT POSSIBLE FOR YOU TO
SEE THESE.
NEXT SLIDE.
WE TALKED ABOUT THE
GROUNDBREAKING FOR THE SURGERY
RADIOLOGY LABORATORY MEDICINE
WING.
WE HAD A FEW DAYS OF RAIN IN
SEPTEMBER, AND SO THIS IS WHAT
OUR HOLE LOOKED LIKE THEN.
IT'S PRETTY MUCH DRIED OUT NOW.
IT'S ONE OF THE MORE ENJOYABLE
PARTS OF MY DAY, TO GO OVER TO
THE STAIRWELL ON THE NORTHWEST
CORNER OF CLINICAL CENTER, GO TO
THE FIFTH OR SIXTH FLOOR AND
WATCH THE PROJECT, WATCH THEM
MOVE DIRT.
YOU CAN ACTUALLY USE THE STOP
WATCH FUNCTION AND TIME HOW
OFTEN A DUMP TRUCK FULL OF DIRT
LEAVES THE CAMPUS AS THEY ARE
DOING THIS.
WHAT THEY SAID WAS RIGHT, EVERY
THREE MINUTES WHEN THEY ARE
GOING.
SO, IT IS MAKING PROGRESS.
WE DID HAVE SOME VISITORS FROM
THE SENATE HEALTH COMMITTEE
EARLIER THIS WEEK WHO WANTED TO
SEE THE PROJECT.
I THINK THE OFFICE OF RESEARCH
FACILITIES DID A GREAT JOB
PROVIDING THE GROUND-LEVEL VIEW
BUT I MADE SURE THEY HAD A FIFTH
FLOOR VIEW THAT I REGARD AS SORT
OF SPECIAL TO THOSE OF US WHO
WORK IN THE CLINICAL CENTER.
AND SO THERE WE ARE.
NEXT SLIDE.
WE ACTUALLY HAD TO ADJUST THIS
SLIDE BECAUSE WE SAID WE
UNVEILED IT ON THE 7th OF
SEPTEMBER BUT IT TURNS OUT WE
DIDN'T UNVEIL IT ON THE 7th.
THERE WAS SOMETHING THAT
HAPPENED AND WE WEREN'T ABLE TO
DO IT THAT DAY.
NEXT TIME YOU VISIT THE CLINICAL
CENTER I HOPE YOU'LL STOP BY AND
VIEW THIS STRIKING EXHIBIT THAT
HONORS THE NOBEL PRIZE WINNER,
ONE OF THE THREE NOBEL PRIZE
WINNERS FOR 2020 IN PHYSIOLOGY
AND MEDICINE FOR HELPING TO
DISCOVER THE HEPATITIS C VIRUS
AND YOU'LL SEE A COUPLE OF VERY
INTERESTING THINGS, FIRST OF ALL
THAT DR. ALTER SHARES THE
EXHIBIT WITH A WHOLE HOST OF
PEOPLE THAT HELPED HIM ALONG THE
WAY DO THIS PROJECT.
AND THAT'S REALLY, REALLY
IMPORTANT.
AND SO WE'RE STILL IN THE
PROCESS OF GETTING THE UNVEILING
SCHEDULED, BUT I THINK WE ARE
GOING TO GET IT DONE SOMETIME IN
THE NEXT FEW WEEKS.
NEXT SLIDE.
LAST WEEK WE HAD A VERY
INTERESTING -- A FORMER NIH
PHYSICIAN-SCIENTIST DR.
BERNSTEIN LATE IN LIFE
DISCOVERED HIS ARTISTIC BEND AND
BEGAN DOING WOOD SCULPTURES, AND
HE FIRST STARTED TRYING TO DO IT
WITH SORT OF HAMMER AND CHISEL.
THEN HE FIGURED OUT HE HE
COULDN'T GET MUCH DONE UNTIL HE
STARTED USING A CHAINSAW.
SO WE DEDICATED LAST FRIDAY
THESE TWO SCULPTURES THAT ARE
JUST OUTSIDE OUR 7th FLOOR
CHAPEL AND DR. BERNSTEIN PASSED
AWAY A FEW YEARS AGO BUT WE HAD
HIS WIDOW AND SOME OTHER OF HIS
FRIENDS AND HER FRIENDS THERE
WITH US.
AND WE HAD A VERY NICE INSPIRING
DAY IN THE AFTERNOON AT THE
CHAPEL.
NEXT SLIDE.
WE HAVE HAD A PRESENTATION, IT
WASN'T PART OF GRAND ROUNDS, BY
DR. EARNEST GRANT, PAST
PRESIDENT OF THE ANA, THE TOPIC
WAS ABOUT MEN IN NURSING IT WAS
ORGANIZEDDED BY CLINICAL CENTER
NURSING DEPARTMENT, ALSO PART OF
OUR DIVERSITY, EQUITY,
INCLUSION, AND ACCESSIBILITY
PROGRAMS BESIDES DR. GRANT WE
HAD A SERIES OF OUR MALE NURSES,
A PANEL THAT PARTICIPATED IN THE
PROGRAM WITH SOME REALLY, REALLY
INSPIRING STORIES AND IT WAS --
THIS WAS WELL ATTENDED, WELL
RECEIVED, AND WE'RE VERY HAPPY
WE WERE ABLE TO HOST DR. GRANT
VIRTUALLY.
NEXT SLIDE.
LAST BUT NOT LEAST, NO STRANGER
TO THE LAST BOARD BUT MAYBE KIND
OF UNKNOWN TO THIS PARTICULAR
BOARD, WE HAD DR. DAVID
HENDERSON, WHO WAS THE LONGTIME
HOSPITAL EPIDEMIOLOGIST AT THE
CLINICAL CENTER, DEPUTY DIRECTOR
FOR CLINICAL CARE, WHAT WE NOW
CALL THE CHIEF MEDICAL OFFICER,
TALKING ABOUT THE COVID-19
PANDEMIC, LOOKING BACK AND
LOOKING FORWARD, REALLY TALKING
ABOUT THE SPECIFICS RELATED TO
OUR HOSPITAL RESPONSE.
DAVID WAS ALSO THE PRESIDENT OF
THE SOCIETY OF HOSPITAL
EPIDEMIOLOGISTS OF AMERICA,
ACTUALLY THE YEAR OF HIS
PRESIDENCY COINCIDED WITH THE
FIRST YEAR OF THE PANDEMIC, AND
SO DAVID FOR THE LAST THREE
YEARS HAS BEEN PARTICIPATING IN
WEEKLY PHONE CALLS WITH HOSPITAL
EPIDEMIOLOGISTS ALL AROUND THE
COUNTRY, AND HELPED ADVISE.
DAVID STEPPED DOWN FROM CHIEF
MEDICAL OFFICER POSITION AT THE
END OF 2019 BUT WE HAVE HAD HIS
SERVICES RETAINED ON CONTRACT
DURING ALL OF THE TIME SINCE.
SO WE'VE HAD SOME EXCELLENT,
EXCELLENT INPUT.
NEXT SLIDE.
THIS IS WHAT ACTIVITY LOOKS
LIKE.
YOU CAN SEE 2022 AND 2023 LOOK
ABOUT THE SAME.
SEPTEMBER WAS A LITTLE LOWER
THAN I THOUGHT, BUT IT IS IN
ESSENCE THE 2022 AND 2023 IN
TERMS OF INPATIENT AVERAGE DAILY
CENSUS WAS PRETTY STABLE, AND
WE'RE STILL BELOW THE THREE-YEAR
AVERAGE SO 19 AND PART OF 20
WOULD HAVE BEEN PRE-PANDEMIC.
NEXT SLIDE.
THIS IS WHAT IT LOOKS LIKE IN
TERMS OF NUMBERS.
SO FOR THE YEAR, ADMISSIONS WERE
UP 7% BUT OUR LENGTH OF STAY WAS
DOWN.
GETTING PEOPLE OUT OF THE
HOSPITAL A DAY SOONER IS BETTER
FOR THEM THAN HAVING THEM IN THE
HOSPITAL A DAY LONGER THAN THEY
NEED TO BE.
SO INPATIENT DAYS ARE BASICALLY
THE SAME AS THEY WERE IN 2022,
AND CENSUS AS I SAID IS THE
SAME.
IT'S GOOD TO SEE OUTPATIENT
VISITS GO UP BY 8% AND ALL OF
THAT'S BEEN IN CLINIC VISITS,
NOT IN DAY HOSPITAL VISITS.
ALTHOUGH OUR DAY HOSPITAL STAYED
FAIRLY BUSY.
7% INCREASE IN INPATIENTS, WHICH
IS ALSO GOOD.
NEXT SLIDE.
THE HOSPITAL AREAS THAT HAVE
GONE UP NATIONAL CANCER
INSTITUTE A COUPLE OF THEIR
PROTOCOLS AND SINCE WE HAVE --
WE'RE BASICALLY BACK TO RUNNING
THE CLINICAL CENTER LIKE WE WERE
PRE-PANDEMIC, THAT IS WE DON'T
HAVE AN AREA SET ASIDE FOR
COVID-19 TESTING FOR THE STAFF.
WE ARE ABLE TO BEGIN USING THE
METABOLIC WARD AGAIN, SO THE
NATIONAL INSTITUTE FOR DIABETES,
DIGESTIVE DISORDERS AND KIDNEY
DISEASE, ONE OR TWO OF THEIR
VERY BUSY METABOLIC RESEARCHERS
HAS BEEN ABLE TO USE THE
INPATIENT UNIT AS WELL.
THAT ONE -- THOSE ARE THE AREAS
THAT HAVE GONE UP SINCE THE LAST
TIME WE LOOKED AT THE NUMBERS.
AGAIN, IN TELEHEALTH,
APPROXIMATELY 10% OF OUR VISITS
ARE TELEHEALTH VISITS.
SOMEPLACE AROUND 600 PER MONTH,
THAT'S ROUGHLY TWO DAYS OF
OUTPATIENT VISITS PER MONTH BY
TELEHEALTH IN TERMS OF THE
NUMBERS.
AND SO IN AN AVERAGE MONTH THAT
WOULD BE ABOUT 10% OF OUR
VISITS, OUR TELEHEALTH VISITS
NOW.
NEXT SLIDE.
WE CONTINUE TO FOCUS ON
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY.
THIS ANNUALLY WE HAVE TO -- WE
COMMUNICATE WITH NIH, EDI AND
OTHERS WITH REGARD TO OUR
PROGRESS OR LACK THEREOF ON OUR
RACIAL, ETHNIC, AND EQUITY PLAN.
THIS YEAR WAS DONE A LITTLE BIT
DIFFERENTLY.
WE SELF-ASSESSED, AND IT IS AND
HAS BEEN SUBMITTED BUT WE HAVE
TO DOCUMENT OUR ASSESSMENT.
IT'S NOT COMPLETELY
SELF-ASSESSED.
HOW DID YOU DO ON THIS PRIORITY
THAT YOU ESTABLISHED, AND SO --
AND THEN YOU PROVIDE SOME
DOCUMENTATION, AND THEN THEY
LOOK AT OUR SELF-ASSESSMENT AND
WILL GIVE US SOME FEEDBACK.
WE DID INTRODUCE A NEW
INITIATIVE WHICH IS THE PROGRAM
AND WE DID GET THE CLINICAL
CENTER NURSING DEPARTMENT
HIRING, INTERVIEW POLICY KICKED
OFF.
WE CONTINUE TO OFFER GROUND
WATER TRAINING ON A REGULAR
BASIS, AND OUR CLINICAL CENTER
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY ADVISORY
COMMITTEE HAS BECOME MORE ACTIVE
DURING THE COURSE OF THE YEAR.
WE'RE STILL WORKING OUT OUR
AWARDS PROGRAM, AND WE ARE STILL
WORKING OUT ACCESSIBILITY
PROGRAM TO FOCUS ON THE A OF
DIIA. -- DEIA.
WE DID OBSERVE THREE NATIONAL
RECOGNITIONS INDICATED THERE.
NEXT SLIDE.
THESE ARE -- DR. TABAK SORT OF
ALLUDED TO HOW WE ARE BEGINNING
TO THINK DIFFERENTLY ABOUT
DISABILITY, AND WE'RE BEGINNING
TO THINK ABOUT DISABILITY
DEPARTING FROM THE MEDICAL MODEL
OF DISABILITY, AND GETTING MUCH
MORE TO A SOCIAL OR SOCIETAL
MODEL, TRYING TO COUNTERACT OUR
TENDENCIES SOMETIMES THAT ARE
OVERT AND SOMETIMES MORE
SUBCONSCIOUS TOWARD ABLEISM.
AND SO WE HAD A VERY NICE
PRESENTATION BY DAVID RICE FROM
THE NIH STAFF, AND THIS --
THE -- WE'VE HAD TWO OR THREE
PROGRAMS INCLUDING ONE DANCE
PROGRAM ON -- TO WORK ON THE --
OUR SPANISH LATINX GROUPS AND
THEN I ALREADY TALKED ABOUT THE
MEN IN NURSING FORUM.
NEXT SLIDE.
DR. COLLEEN HADIGAN, CHIEF
MEDICAL OFFICER, HAS BEEN
WORKING ON LOOKING AT THE DATA
THAT WE HAVE AVAILABLE TO US TO
LOOK AT HEALTH DISPARITIES.
AND COLLEEN HAS BEGUN GOING OVER
SOME OF THE EARLY DATA THAT WE
HAVE WITH ME, AND WE'VE
IDENTIFIED SOME AREAS TO DO A
DEEPER DIVE AND WE'LL BE BACK TO
DISCUSS THAT DATA A LITTLE BIT
MORE AFTER THE FIRST OF THE
YEAR.
BECAUSE WE DON'T TALK ABOUT
COVERED LIVES, WE'RE NOT A
HEALTH SYSTEM, IT'S BEEN A
LITTLE BIT HARDER TO IDENTIFY
HOW TO LOOK AT OUR DATA BUT
COLLEEN WORKING WITH SOME OF OUR
INFORMATION MANAGEMENT
INFORMATION TECHNOLOGY FOLKS AND
OTHERS, WE'VE BEEN ABLE TO DRILL
DOWN AND LOOK AT A FEW THINGS
AND I THINK GIVEN THE IMPORTANCE
OF THE FOCUS ON HEALTH
DISPARITIES I THINK WE'LL BE
ABLE TO COME BACK TO THE BOARD
AFTER THE FIRST OF THE YEAR AND
TALK ABOUT MORE OF THOSE THINGS.
ALSO, THE TWO GROUPS THAT ASK
FOR WHAT WE'RE DOING ON A
REGULAR BASIS ARE ACGME WHO LOOK
AT OUR TRAINING PROGRAMS, AND
ALSO THE JOINT COMMISSION, SO
THIS WILL -- COLLEEN'S WORK WILL
GO MAKE A SIGNIFICANT DENT IN
THE PROGRESS THAT THOSE GROUPS
EXPECT TO SEE I THINK.
NEXT SLIDE.
YOU ALL HAVE RECEIVED CLINICAL
CENTER QUARTERLY REPORT, AS WE
PROVIDE PRIOR TO EVERY MEETING.
AFTER THIS MEETING THE REPORT
WILL BE POSTED ON THE CLINICAL
CENTER WEBSITE FOR PUBLIC
VIEWING.
AND DR. LANG IS HERE TO ANSWER
ANY QUESTIONS THAT YOU MIGHT
HAVE ABOUT THOSE METRICS.
I THINK THIS QUARTER FOR THE
FIRST TIME WE'RE BACK TO
REPORTING THE RESULTS OF OUR
PRESS GANEY PATIENT SATISFACTION
MEMBERS WHICH CONTINUE TO LOOK
REALLY GOOD, SO IN AGGREGATE OUR
NUMBERS LOOK VERY GOOD.
WE STILL FIND PLENTY OF
OPPORTUNITY FOR IMPROVEMENT AS
WE SIT DOWN AND TALK WITH
PATIENTS AND FAMILIES WHO DIDN'T
HAVE A VERY GOOD EXPERIENCE, AND
THERE ARE -- PART OF THE PRESS
GANEY SURVEY IS THE OPPORTUNITY
TO PROVIDE NARRATIVE COMMENTS
THAT COME BACK TO US AND DR.
HADIGAN AND OTHERS MEET ON A
WEEKLY BASIS TO GO OVER THE
NARRATIVE COMMENTS AND DECIDE
WHAT WE MIGHT DO THAT WOULD MAKE
THE PATIENT EXPERIENCE EVEN
BETTER.
NEXT SLIDE.
WE DO, IF WE CAN EVER STOP DOING
SURVEYS FOR OTHER PEOPLE, WE
LIKE TO FEEL THAT THE PATIENT
SAFETY -- SURVEY OF PATIENT
CULTURE, EVERY TIME WE GET READY
TO SEND OUR SURVEY OUT WE FIND
SOMEBODY ELSE IS IN FRONT OF US
WITH A SURVEY AND SO BUT THIS IS
VERY IMPORTANT FOR US.
WE DID THIS IN 2021, IS THAT --
2021?
2020, DID IT IN 2017.
IT'S NOT EXACTLY THE SAME
SURVEY, IT'S THE SURVEY WE GET
FROM AHRQ BUT IT'S NOT EXACTLY
THE SAME SURVEY BUT IT DOES
PROVIDE SOME WAY TO COMPARE HOW
WE'RE MAKING PROGRESS.
BETWEEN 2017 AND 2020 WE DID
MAKE SOME SIGNIFICANT PROGRESS.
WE DO HAVE THE RESULTS OF OUR
FEDERAL EMPLOYEE VIEWPOINT
SURVEY.
WE HAVE SOME OF THE RESULTS.
WE KNOW WE SET A RECORD FOR
PARTICIPATION, OUR OFFICIAL
PARTICIPATION RATE IS .4
PERCENTAGE POINTS ABOVE WHERE IT
WAS LAST YEAR WHEN WE DID IT, SO
WE SET A NEW RECORD BUT NOT BY
VERY MUCH, IT'S STILL BELOW WHAT
WE REALLY WANTED TO DO.
WE'VE SEEN -- I'VE SEEN THE
PARTICIPATION PATIENT RATE BY
GROUPS IN CLINICAL CENTER BUT
DON'T HAVE THE DETAILED
BREAKOUT.
WHEN WE HAVE THAT WE'LL PROBABLY
BE BACK. THAT WILL PROBABLY
ALSO BE ON THE AGENDA AFTER THE
FIRST PART OF THE YEAR.
NEXT SLIDE.
SO, THIS IS MORE DETAIL ON THE
SURVEY FROM AHRQ.
THE AGENCY FOR HEALTH CARE
RESEARCH AND QUALITY, LAST
ADMINISTERED IN 2020.
THIS HAS A LITTLE DIFFERENT BEND
BECAUSE THERE'S MORE FOCUS ON
BOTH PHYSICAL AND PSYCHOLOGICAL
SAFETY OF THE STAFF.
NEXT SLIDE.
SO, THESE ARE THE TOPICS THAT
ARE COVERED IN THE SURVEY.
NEXT SLIDE.
AND WORKPLACE SAFETY
SUPPLEMENTAL SET.
AND THESE ARE STILL APPLICABLE
TO US ALTHOUGH A FEW ARE LESS
APPLICABLE TO US.
WE ARE -- IN TERMS OF PHYSICAL
SAFETY WE ARE BEHIND A FENCE
WITH GATES AND GUARDS, AND
IT'S -- THAT WILL MAKE A BIG
DIFFERENCE THAN IF YOU WERE AT A
HOSPITAL IN THE MIDDLE OF A BIG
CITY THAT I WAS DOWNTOWN THE
NIGHT BEFORE LAST FOR THE
FOUNDATION FOR THE NIH AWARDS
BANQUET, WALKED BY THE GEORGE
WASHINGTON HOSPITAL AND IT'S
RIGHT THERE IN THE MIDDLE OF
TOWN, A LOT OF THINGS COULD GO
ON AROUND THERE THAT PROBABLY
ARE VERY UNLIKELY TO TAKE PLACE
IN OUR -- BUT IT DOESN'T MEAN
OUR STAFF DON'T HAVE CONCERNS
ABOUT THEIR SAFETY.
SO-- NEXT SLIDE.
SO, THIS IS 2024.
I SORT OF GAVE ADVANCE NOTICE OF
THIS.
WE THINK THIS WILL BE AN AUSTERE
YEAR.
OUR JOB IS TO HOLD THE GAINS
WE'VE MADE IN TERMS OF PATIENT
SAFETY, PATIENT EXPERIENCE,
PATIENT CARE DURING THE COURSE
OF THE LAST FEW YEARS.
WE HAVE NO PLANS FOR NEW BRIGHT
SHINY OBJECTS, AND WE WILL NEED
OBVIOUSLY TO PIVOT TO THE
PRIORITIES OF THE NEW NIH
LEADERSHIP.
DR. BERTAGNOLLI HAS BEEN THE
CHAIR OF THE CLINICAL CENTER
GOVERNING BOARD SO I HAVE HAD A
LOT OF CONTACT AND A LOT OF
COMMUNICATION WITH DR.
BERTAGNOLLI.
SHE OBVIOUSLY COMES FROM A
CLINICAL MEDICINE CANCER SURGERY
BACKGROUND, SO AS A FORMER
CLINICIAN MYSELF WHO STILL
THINKS LIKE A CLINICIAN I THINK
OUR ABILITY TO COMMUNICATION IS
IMPORTANT.
I'M STARTING TO WRITE DOWN SOME
THINGS I HEAR HER SAY THAT I
KNOW WE'RE GOING TO HEAR OVER
AND OVER AGAIN, AND I THINK SO
WE'RE LOOKING FORWARD AS DR.
TABAK INDICATED THAT -- AND DR.
TABAK IS A HUGE SUPPORTER OF THE
CLINICAL CENTER, AND I WOULD BE
REMISS IF I DIDN'T TELL YOU THAT
I'VE BEEN ENJOYED MY 6 1/2 YEARS
AT THE NIH IN PART BECAUSE I
KNEW I HAD A FRIEND IN THE
CLINICAL CENTER IN THE DEPUTY'S
OFFICE, DEPUTY DIRECTOR'S
OFFICE, AND IN THE ACTING
DIRECTOR'S OFFICE.
WE DID HAVE SOME EXTRA MONEY
LAST YEAR AND WE HAVE TWO
PROJECTS UNDERWAY, ONE IS A
PROJECT TO SEE WHETHER WE CAN
GET A BETTER ASSESSMENT OF
NURSING WORKLOAD MANAGEMENT.
OUR PATIENTS ARE A LITTLE
DIFFERENT AND A LITTLE MORE
COMPLEX.
THE NUMBER OF INFUSIONS OR IV
ADMINISTRATIONS FOR SOME OF OUR
MORE COMPLEX PROTOCOLS MEAN THAT
THERE'S A TREMENDOUS AMOUNT OF
NURSING WORKLOAD AND WORK HOURS
AND TRYING TO QUANTIFY TO MAKE
SURE WE HAVE THE RIGHT NUMBER OF
STAFF FOR THE RIGHT NUMBER OF
PATIENTS WITH THE RIGHT ACUITY
IS REALLY IMPORTANT.
THERE ARE ALWAYS SOME OTHER
PRIORITIES LIKE IF WE HAVE
ANOTHER YEAR LIKE WE HAD IN 2018
THE COST OF PHARMACY MEDICATIONS
TOOK OFF, THAT'S A BIG PROBLEM.
BUDGET HAS BEEN APPROVED BY THE
CLINICAL CENTER GOVERNING BOARD.
IT STILL HAS TO GO THROUGH THE
NIH STEERING COMMITTEE AND
FINALLY THE FULL BODY OF
INSTITUTE DIRECTORS, AND BUT
WE'RE HOPEFUL.
NEXT SLIDE.
SO, THIS IS THE AGENDA FOR
TODAY.
YOU'VE ALREADY HEARD FROM DR.
COOTS AND DR. TABAK AND ME.
I'LL BE FOLLOWED IN A FEW
MINUTES BY JACK SHERN.
JACK IS A PEDIATRIC ONCOLOGIST
BY TRAINING AND HE WILL GET THE
MORNING OFF TO A GOOD START
TALKING ABOUT CAMP FANTASTIC AND
WHAT THE CLINICAL CENTER DOES TO
FACILITATE THE CAMP FANTASTIC.
DR. JORDAN, WE'RE IN OUR MAGNET
WINDOW, WE'VE SUBMITTED
APPLICATION, COLLECTING ALL THE
DOCUMENTATION FOR THE MAGNET
VISIT NEXT YEAR.
DR. JORDAN WILL PROVIDE THAT.
JON McKEEBY IS HERE, JON IS
GOING TO TALK ABOUT WHERE WE ARE
WITH OUR ELECTRONIC HEALTH
RECORD AND OUR EFFORTS TO
PROCURE A NEW ELECTRONIC HEALTH
RECORD.
THE PRESENTATION WILL COME AS NO
SURPRISE TO BOARD MEMBER
STEPHANIE REEL, WHO HAS BEEN A
GREAT FRIEND AND GREAT ADVISER
AND PROVIDES GOOD SERVICE NOT
ONLY TO THIS BOARD BUT BETWEEN
BOARD MEETINGS WHEN WE WANT TO
TALK ABOUT THE HOSPITAL I.T.
ISSUES.
JOHN POLLACK AND ANN BERGER WILL
BE HERE TO TALK ABOUT THE
CLINICAL CENTER WELLNESS
PROGRAM, FOCUSED ON THE CLINICAL
CENTER STAFF.
AND THEN WE'LL WIND UP WITH A
PRESENTATION BY ANDYY SINGLETON
ON CENTER FOR ALZHEIMER'S AND
RELATED DEMENTIAS.
IF I LOOK AT OUR STRATEGIC PLAN
PLAN FOR 2024, FOR 2019
THE ONE WE'RE REDOING AT THE
PRESENT TIME YOU'LL SEE THAT
ALZHEIMER'S AND RELATED
DEMENTIAS IS AN AREA WE THOUGHT
WE SHOULD BE DOING MORE IN A FEW
YEARS AGO.
AN OPPORTUNITY CAME UP TO
PROVIDE SPACE WITHIN THE
CLINICAL CENTER.
IT REQUIRED A LITTLE BIT OF
NEGOTIATION WITH SOME OTHER
PEOPLE, REWICKERRING, MOVING
SOME MONEY AROUND, BUT WE
FINALLY HAVE A SPACE FOR THE
CLINICAL PROGRAM FOR ALZHEIMER'S
AND RELATED DEMENTIA TO GO.
DR. SINGLETON IS THE PROGRAM --
IS THE MANAGER FOR ALL THINGS
CARD AND HE WILL BE HERE TO TALK
ABOUT THE VISION FOR THAT
PROGRAM, INCLUDING THE CLINICAL
WORK.
NEXT SLIDE.
AND SORT OF LATE BREAKING NEWS
BUT DR. SINGLETON WHO WILL BE
OUR PRESENTER, IS AN NIH
DISTINGUISHED INVESTIGATOR AND
ONLY A SMALL PERCENTAGE OF NIH
INVESTIGATORS ACHIEVE THAT
STANDING.
AND HE IS THE -- HE IS RUNNING
THE CENTER FOR ALZHEIMER'S AND
RELATED DEMENTIAS, RECENTLY
RECEIVED A VERY PRESTIGIOUS
AWARD CALLED THE BREAKTHROUGH
PRIZE, AND I WON'T READ TO YOU
EVERYTHING ABOUT THE PRIZE.
I WOULD JUST DROP DOWN TO SAY
THAT DR. SINGLETON WAS NOT THE
ONLY NIH WINNER THIS TIME
AROUND, THAT ELLEN SIDRANSKY AT
THE NATIONAL HUMAN GENOME
RESEARCH INSTITUTE AT NIH WAS
ALSO RECOGNIZED THIS TIME.
DR. SINGLETON'S EFFORTS ARE WITH
RESPECT TO IDENTIFYING THE GENES
THAT SEEM TO PREDISPOSE FOR
PARKINSON'S DISEASE AND HOW THEY
DO THAT, HOW THE PATHOPHYSIOLOGY
OF THAT.
SO ANDY WILL BE HERE IN A LITTLE
BIT.
THEY APPROACHED ME, BOTH ANDY
ALONG WITH FOLKS FROM NINDS, AND
THE NATIONAL INSTITUTE FOR
AGING, AND THEY ARE LOOKING -- I
MEAN, PART OF THIS IS GOING TO
BE AN ADVERTISEMENT, THEY ARE
LOOKING FOR SOMEBODY TO LEAD THE
CLINICAL PROGRAM AT THE CENTER
FOR ALZHEIMER'S AND RELATED
DEMENTIAS, AND ONE OF THE
BARRIERS TO RECRUIT BE SOMEBODY
TO RUN THIS PROGRAM THEY DIDN'T
HAVE A SPACE, THEY DIDN'T HAVE A
BUILDING, DIDN'T HAVE A SPACE TO
SAY THIS IS WHERE YOU'RE GOING
TO BE ABLE TO GET YOUR WORK
DONE.
AND I THINK IT TOOK A FAIR
AMOUNT OF WORK AND A LITTLE BIT
OF NEGOTIATION BY A NUMBER OF
PEOPLE BUT I THINK WE'VE FINALLY
FIGURED THAT OUT NOW.
OKAY.
SO THAT'S KIND OF THE UPDATE.
AGAIN, THANK YOU FOR BEING HERE.
AND IF THERE ARE NO QUESTIONS I
WILL TURN IT OVER TO DR. SHERN.
>> NEXT SPEAKER IS DR. JACK
SHERN, PHYSICIAN-SCIENTIST WITH
PEDIATRIC ONCOLOGY BRANCH,
RESEARCH FOCUSED ON DEFINING AND
DEVELOPING PRECISION THERAPIES
TARGETING GENETIC MUTATIONS THAT
DRIVE TUMORIGENESIS, MOST
RECENTLY EFFORTS HAVE TURNED
TOWARD USING SINGLE CELL
SEQUENCING TO DISCOVER TUMOR
SUBCLONAL POPULATIONS THAT ARE
RESPONSIBLE FOR RELAPSE AND
REFRACTORY DISEASE.
JACK'S PRESENTATION TODAY
FOCUSES ON CAMP FANTASTIC, AN
AMAZING PROGRAM STRONGLY
SUPPORTED BY THE NIH, ESPECIALLY
NCI PEDIATRIC ONCOLOGY BRANCH.
CAMP SERVES MANY PARTNER MEDICAL
CENTERS IN THE REGION OFFERING
CAMPING EXPERIENCES FOR CHILDREN
WITH CANCER.
SO, JACK, I TURN IT OVER TO YOU.
>> WELL, THANK YOU FOR HAVING ME
HERE TODAY.
AS YOU HEARD I'M A PEDIATRIC
ONCOLOGIST.
AND FIRST I WANT TO APOLOGIZE TO
OTHER SPEAKERS BUT I'M PRETTY
SURE THIS WILL BE THE MOST
ENJOYABLE PRESENTATION OF THE
ENTIRE DAY.
SO, SIT BACK AND ENJOY THIS ONE.
THE REASON I SAY THAT IS BECAUSE
I'M HERE REPRESENTING AS THE
MEDICAL DIRECTOR OF THIS
WONDERFUL THING THAT HAS GONE ON
FOR DECADES NOW AT THE CLINICAL
CENTER CALLED CAMP FANTASTIC.
THE NEXT SLIDE PLEASE.
SO, THIS WAS STARTED IN 1983,
AND MY UNDERSTANDING IS THAT
THIS IS THE LONGEST-RUNNING
ACTIVE PROTOCOL AT THE CLINICAL
CENTER.
YOU SEE 83C 002 STARTED BY A
GROUP OF PEDIATRIC ONCOLOGISTS
AT THAT TIME, REALLY TREATING
WITH SOME INTENSIVE INPATIENT
TREATMENTS OUR PEDIATRIC
ONCOLOGY PATIENTS IN THE
CLINICAL CENTER.
AND SO THE IDEA CAME THAT MAYBE
SOMETHING FUN WOULD BE IMPORTANT
FOR THESE PATIENTS THAT WERE
COOPED UP IN THE HOSPITAL.
AND REALLY WHAT I'VE COME TO
SORT OF UNDERSTAND ABOUT THIS
CAMP AND PSYCHOLOGICAL BENEFITS
OF THIS CAMP ARE THREE THINGS.
THE FIRST IS THERE'S AN OBVIOUS
BENEFIT TO THE PATIENTS.
YOU KNOW, THE PATIENTS ARE UNDER
SUPREME STRESS AS THEY GO
THROUGH THEIR THERAPY.
WHEN WE GET THEM OUT INTO A
NORMAL CAMPING EXPERIENCE WHERE
THEY HAVE FUN, INTERACT WITH
PEERS, GAIN CONFIDENCE, THEY
LEARN TO TALK ABOUT THEIR
DISEASE, AND THEY GO HOME AND
THEY HAVE NEW INTERACTIONS WITH
THEIR PEERS AND WITH THEIR
PARENTS.
SO I THINK THIS IS FAIRLY
OBVIOUS THAT IF YOU DO SOMETHING
GOOD FOR THESE KIDS IN A NORMAL
EXPERIENCE OUTSIDE THE HOSPITAL
THAT THIS IS BENEFICIAL.
THERE'S A SECOND BENEFIT, AND
THAT'S TO THE HEALTH CARE TEAM.
TAKING CARE OF THESE PATIENTS IS
EMOTIONALLY CHALLENGING, AND
GRUELING AT TIMES.
AND IF YOU ARE A NURSE OR DOCTOR
OR SOCIAL WORKER OR TEAM MEMBER
IN THE HOSPITAL, SEEING THESE
PATIENTS DAY IN, DAY OUT, IN
THAT ENVIRONMENT, IT'S MUCH
DIFFERENT WHEN YOU GET THEM OUT
RIDING A HORSE IN FRONT ROYAL,
VIRGINIA, SEEING THEM HAVE FUN,
SEEING THEM LAUGH AND INTERACT
WITH THEIR PEERS.
IT'S A HUGE BENEFIT TO THE
MEDICAL TEAM'S MORALE AND
CONFIDENCE.
AND FINALLY, THE FAMILIES
ACTUALLY BENEFIT FROM THIS QUITE
A BIT AS WELL.
AND THOMAS SHEILA BAKER ARE HERE
REPRESENTING THE FAMILY.
THIS IS A COUPLE THAT STARTED
THIS CAMP IN 1983.
THEY LOST THEIR DAUGHTER JULIE
TO LYMPHOMA.
AND THEY DECIDED THIS WAS SORT
OF THEIR MISSION TO SORT OF
BUILD THIS OUT OVER TIME SO THEY
WERE THE FOUNDERS OF THE CAMP
AND REALLY PARTNERED WITH THE
CLINICAL CENTER TO MAKE THIS
HAPPEN.
SO, IT REALLY SERVES AS A
RESPITE FOR THE FAMILIES TAKING
CARE OF THESE MEDICALLY COMPLEX
CHILDREN, CONSTANTLY.
WE GET TEXTS FROM THE FAMILY
THAT THE PARENTS ARE OUT FOR
THEIR FIRST DATE NIGHT IN
FOREVER, BECAUSE THEIR MEDICALLY
COMPLEX CHILDREN ARE BEING TAKEN
CARE OF IN A SAFE ENVIRONMENT
AND HAVING FUN AND THEY DON'T
HAVE TO WORRY ABOUT THAT
ANYMORE.
SO REALLY THESE THREE GROUPS ARE
CRITICAL.
NEXT SLIDE.
WHERE DO WE DO THIS?
THE CAMP TAKES USUALLY ABOUT 100
PEDIATRIC ONCOLOGY PATIENTS OUT
TO FRONT ROYAL, VIRGINIA.
THIS IS AT THE 4-H CENTER.
IT'S BEEN SINCE ITS INCEPTION.
THIS IS A BEAUTIFUL FACILITY,
LARGE PROPERTY WITH LOTS OF
LAND, STABLES FOR THE HORSES,
KIDS STAY IN CABINS OR DORMS.
THERE'S A WONDERFUL POOL.
THERE'S A LAKE WHERE WE CAN DO
ALL SORTS OF FISHING AND
CANOEING.
AND THEN A SPOT FOR CAMPFIRES
EVERY NIGHT WHERE WE CAN SING
SONGS AND ENJOY THE OUTDOORS.
NEXT SLIDE.
SO, THE PATIENTS COME FROM
MULTIPLE CENTERS ACROSS THE
MID-ATLANTIC, AND WE SORT OF
RECRUIT TO TRY AND BRING
PATIENTS FROM A DIVERSE
BACKGROUND, INCLUDING LOTS OF
SMALLER INSTITUTIONS THAT MAY
NOT HAVE THE ABILITY TO RUN A
CAMP ON THEIR OWN.
YOU SEE BUSY CLINICAL CENTERS IN
THE AREA, HOPKINS, NOVA,
CHILDREN'S NATIONAL SEND
PATIENTS TO US.
SO IT'S REALLY A NICE MIX OF
PATIENTS FROM ACROSS THE
MID-ATLANTIC AND OF COURSE ANY
OF THE PATIENTS IN THE PEDIATRIC
ONCOLOGY BRANCH WHO ARE ELIGIBLE
WILL ALSO COME.
NEXT SLIDE.
SO, AS I SAID, THIS HAS BEEN
GOING ON A LONG TIME.
ANYBODY WHO GETS INVOLVED IN
THIS SEEMS TO GET LATCHED ON.
I'VE SEEN THIS OVER AND OVER.
THIS IS ONE OF THE EARLY CAMPS
HERE.
AND ONE OF THE THINGS I LEARNED
WHEN I WAS PUTTING THIS TOGETHER
IS DONNA GREGORY, WHO IS OUR
HEAD OF REHAB, IS ACTUALLY AN
18-YEAR-OLD COUNSELOR IN THIS
PICTURE HERE.
HE'S NOW SORT OF CONTINUED ON
AND BEEN PART OF THIS ALL THE
WAY THROUGH.
AMAZING THING WHERE YOU GET
INVOLVED AND THEN IT'S REALLY
HARD TO NOT GO EVERY AUGUST AND
DO THIS.
NEXT SLIDE.
SO, THIS IS 2019.
CAN YOU SEE IT WAS A BIG CAMP.
WE HAD I THINK 105 KIDS THAT
YEAR THAT JOINED US AT CAMP.
AND, YOU KNOW, REALLY WANT TO
SORT OF POINT OUT THE FACT THAT
COVID WAS A REAL CHALLENGE FOR
THIS.
YOU CAN'T BRING AN IMMUNE
COMPROMISED POPULATION TO FRONT
ROYAL, VIRGINIA, AND PUT THEM
TOGETHER WHEN COVID IS SORT OF
GOING THROUGH THE COMMUNITY.
SO, IT WAS A REAL CHALLENGE FOR
US.
WE HAD TO SHUT DOWN THE CAMP IN
2020, 2021, AND 2022.
AND SO THAT WAS, YOU KNOW, A
REAL CHALLENGE FOR US.
WE DID HAVE REMOTE CAMPS WHERE
WE WOULD SORT OF SEND A BOX OF
CRAFTS TO EACH PATIENT AND THEY
WOULD PERFORM THOSE ON ZOOM.
MANY OF THE KIDS REALLY ENJOYED
THAT.
WE ACTUALLY LEARNED THAT THIS
MIGHT BE A USEFUL MODEL FOR KIDS
THAT ARE IN THE HOSPITAL AND
CAN'T JOIN US EVERY YEAR.
PERHAPS IN THE FUTURE WE'LL
STILL BE ABLE TO HAVE THOSE KIDS
BE INCLUDED IN THIS FUN.
NEXT SLIDE.
SO, THIS IS THIS YEAR.
AGAIN FIRST YEAR BACK IN PERSON.
WE KEPT IT SMALL ON PURPOSE,
ABOUT 55 KIDS THIS YEAR JOINED
US.
WE WERE SELECTED ABOUT WHICH
PATIENTS TO BRING, STILL QUITE
WORRIED ABOUT COVID, WE WERE
SELECTIVE.
LIKE A CRUISE SHIP ON A MOUNTAIN
IN TERMS OF RISK, TOGETHER ALL
THE TIME, WE TOOK CONSERVATIVE
MEASURES, TESTING EACH PATIENT
TWICE BEFORE THEY SHOWED UP TO
CAMP, AND HAD PROTOCOLS IN PLACE
TO SORT OF MITIGATE ANY RISK
THAT WE HAVE.
DESPITE ALL OUR EFFORTS, WE HAD
A PATIENT CALL US ON MONDAY -- A
PATIENT'S MOTHER CALLED US ON
MONDAY SAYING SHE HAD JUST COME
DOWN WITH COVID.
AND DROPPED THE PATIENT OFF ON
SUNDAY.
AND SO WE HAD TO GO THROUGH OUR
PROTOCOLS TO AGAIN MAKE SURE
THAT WE WOULD NOT HAVE AN
OUTBREAK AT CAMP.
AND WE ACTUALLY WERE VERY
SUCCESSFUL IN DOING THAT THIS
YEAR.
NEXT SLIDE.
SO, WHO MAKES THIS HAPPEN?
SO, THIS IS SORT OF THE CORE
GROUP THAT REALLY IS SORT OF THE
DRIVING FORCE OF THIS.
I TOOK OVER A COUPLE YEARS BACK
FOR STEVE CHANOCK, OUR EMERITUS
MEDICAL DIRECTOR, KNOWN TO TELL
LOTS OF JOKES AT CAMP WITH A
GREAT SENSE OF HUMOR AND FUN
WITH THE KIDS.
NICOLE BINDER FROM THE PHARMACY
GROUPS COMES FOR THE WEEK AND
RUNS OUR PHARMACY.
YOU HEARD ABOUT DONNA GREGORY,
AN IMPORTANT PART OF RECREATION
THERAPY WE DELIVER OUT THERE.
AND THEN TAMMY JENKINS, MY RIGHT
HAND AS WE PUT TOGETHER ALL THE
DETAILS AND LOGISTICS OF
RECRUITING THE PATIENTS AND
GETTING TO KNOW THEM BEFORE WE
SHOW UP AT CAMP.
A FORMER PEDIATRIC ONCOLOGY
BRANCH ADMINISTRATIVE OFFICER
KATHY RUSSELL HELPS WITH ROW
LOGISTICS, AND WE PARTNER AND
DAVE STATE AND ANGELA ASHMAN
HELP US.
THE CLINICAL CENTER IS
INSTRUMENTAL.
YOU CAN SEE EVERY DEPARTMENT
THROWS IN SOME CONTRIBUTION TO
THIS FROM THE SHEETS WE NEED TO
BRING OUT THE CAMP, SHEETS AND
BLANKETS AND PILLOWS, TO THE
PHARMACY, TO THE LABORATORIES WE
NEED TO RUN UP HERE ON A SHUTTLE
EVERY DAY TO DO A CBC,
TRANSFUSION MEDICINE IF WE NEED
TO GIVE A PLATELET TRANSFUSION
AT CAMP WE CAN DO THAT.
IT'S A REMARKABLE TEAM EFFORT
FROM MANY DEPARTMENTS AT THE
CLINICAL CENTER.
NEXT SLIDE.
SO WHAT ARE WE REALLY DOING?
ABOUT A THIRD OF EFFORTS ARE
RECRUITMENT AND SCREENING OF NEW
PATIENTS, BRINGING THEM TO THE
CLINICAL CENTER AS A PATIENT.
THE PROTOCOL MANAGEMENT AND THEN
THE MED STAFF RECRUITING AND
CREDENTIALING.
WE REALLY GET A BROAD VARIETY OF
DIAGNOSES OUT THERE, COMMON
THINGS THAT HAPPEN IN
PEDIATRICS, LEUKEMIA, BRAIN
TUMORS, MANY SARCOMAS WE TAKE
FROM OUR PATIENT POPULATION HERE
AT THE NIH, AND SO ON AND SO
FORTH.
AND TO PULL THIS OFF IT REQUIRES
A LOT OF MEDICAL STAFF.
IT INCLUDES IN MOST CAMPS 45
MEDICAL STAFF PARTICIPATING.
NEXT SLIDE.
AND WHY IT TAKES SO MANY PEOPLE
IS BECAUSE WE LITERALLY BUILD
THE PEDIATRIC ONCOLOGY CLINIC AT
THE 4-H CENTER.
YOU CAN SEE SORT OF THE SETUP.
IT'S FULLY LOADED WITH ALL THE
EQUIPMENT WE MIGHT NEED FROM AN
EMERGENCY DEFIBRILLATOR TO FULLY
STOCKED PHARMACY FOR IV
ANTIBIOTICS OR ANYTHING WE MIGHT
NEED TO GIVE OUT AT CAMP.
AND YOU CAN SEE SORT OF THE
GROUP THAT PULLED THAT OFF THIS
YEAR DOWN IN THE BOTTOM CORNER,
A GROUP OF REALLY DEDICATED MED
STAFF.
NEXT SLIDE.
AGAIN, WE HAVE FULLY STOCKED
EVERYTHING, AND EVERY DAY WE ARE
CALLING THE CLINICAL CENTER AND
SAYING WE NEED MORE ACE
BANDAGES, WE NEED MORE MIRALAX,
MORE TYLENOL, AND THOSE THINGS
ARE SORT OF DELIVERED REMARKABLY
EFFICIENTLY BY THE CLINICAL
CENTER SO IT'S REALLY A GREAT
SUPPORTIVE OPERATION TO BE ABLE
TO ASK AND JUST TO KNOW WE HAVE
THE SUPPORT OF THE CLINICAL
CENTER BEHIND US OUT THERE.
NEXT SLIDE.
SO, THE MEDICAL TEAM, YOU KNOW,
WHAT ARE WE DOING?
REALLY IT'S IMPORTANT WE HAVE A
CORE GROUP THAT'S VERY DEDICATED
AND HAS A GREAT SENSE OF
COMMUNICATION.
ONE THING I'LL SAY ABOUT THIS IS
WE'RE HIGHLY RELIANT ON THE
STAFF THAT WE BRING OUT THERE.
AND WHAT I MEAN BY THAT IS WE
HAVE MULTIPLE PEDIATRIC
ONCOLOGISTS WHO COME FROM
PEDIATRIC ONCOLOGY BRANCH AND
SUPPORT THIS, PEDIATRIC NURSES
CAN GIVE CHEMOTHERAPY REGIMENS
AT CAMP AND BROADER NURSING, BUT
THE CAMP HAS HISTORICALLY RELIED
ON SOMETHING CALLED A SPECIAL
VOLUNTEER.
A SPECIAL VOLUNTEER WOULD FOR
INSTANCE BE A NURSE FROM AN
INSTITUTION THAT WAS SENDING
PATIENTS TO US.
A NURSE WHO TAKES CARE OF THOSE
PATIENTS DAY IN AND DAY OUT AT
NOVA OR RICHMOND AND THEY COULD
SEND SOME OF THEIR STAFF AS WELL
TO SORT OF HELP US KNOW THOSE
PATIENTS AND TO GIVE US
ADDITIONAL FEEDBACK AND HAVE THE
KIDS FEEL LIKE PART OF THEIR
TEAM IS ALSO AT CAMP.
AND SO WE'VE BEEN RELIANT ON
THOSE.
THIS YEAR WE SORT OF RAN INTO
SOME ISSUES WHERE THE NIH STAFF
HAD TO SORT OF CARRY A LITTLE
BIT HEAVIER LOAD, AND WE HAVE
WORKAROUNDS TO DO THAT.
WE DID PULL IT OFF BUT THE
SPECIAL VOLUNTEER I THINK IS AN
IMPORTANT FEATURE OF CAMP THAT
WE WOULD LIKE TO KEEP MOVING
FORWARD.
NEXT SLIDE.
THIS IS A TYPICAL DAY FOR THE
MED STAFF.
YOU KNOW, IT'S A LOT OF BUMPS
AND BRUISES, WHEN THESE KIDS ARE
OUT RUNNING AROUND DOING FUN
THINGS.
WE HAVE A FULL LABORATORY SET UP
SO WE, AGAIN, CAN DO THINGS LIKE
BLOOD WORK FOR OUR PATIENTS.
WE PUT A TON OF SUNSCREEN AND
BUG SPRAY ON OUR PATIENTS.
I THINK IT MIGHT BE A SPECIFIC
LINE ITEM IN THE CLINICAL CENTER
BUDGET, THE BUG SPRAY AND
SUNSCREEN WE PROVIDE OUT THERE.
IF WE HAVE A PATIENT THAT WE'RE
CONCERNED ABOUT WHO MIGHT BE
NEUTROPENIC OR AT HIGHER RISK,
WE'LL DO VITALS AND WE SEE THESE
PATIENTS AT LEAST THREE TIMES A
DAY WHAT WE CALL MEDLINE, THEY
GET MEDICINES AND CHECK IN WITH
NURSES AND CHECK IN WITH THE
DOCTOR WHO IS ON CALL.
YOU KNOW, THE REALITY IS A LOT
OF WHAT I DO AND WHAT SOME OTHER
STAFF DO ARE WE'RE SORT OF THE
PARENT AT CAMP.
AND SO HOMESICKNESS, STOMACH
ACHES, MY FRIENDS AREN'T PLAYING
WITH ME THE WAY I WANT TO PLAY
WITH THEM, I WANT TO DO THIS AND
I CAN'T DO THAT, MANY TIMES
WE'RE SORT OF SOLVING THOSE SORT
OF PROBLEMS RATHER THAN MAJOR
MEDICAL THINGS.
AND IF YOU CLICK THROUGH TO THE
NEXT SLIDE, A BIG PART OF WHAT
WE ALSO DO IS ENTERTAINMENT.
KIDS REALLY LOVE TO SEE THEIR
DOCTOR MAKE A FOOL OF HIMSELF BY
SMASHING RAW EGGS ON HIS HEAD.
THIS IS I THINK A LOT OF THE
PART OF WHAT WE DO IS SORT OF
TAKE OFF THE WHITE COAT AND HAVE
FUN AND BE SILLY AND THE KIDS
SEE THAT AND THEY SAY, WOW, THIS
IS NOT THE SAME PERSON THAT I
SEE IN THE CLINIC.
SO THIS IS AN IMPORTANT PART OF
WHAT WE DO.
NEXT SLIDE.
A BIG FEATURE EVERY YEAR IS THE
TALENT SHOW.
AND YOU SEE THAT THERE'S
FREQUENTLY SOME CELEBRITIES THAT
WILL COME OUT AND PERFORM FOR
US.
DR. COLLINS HAS ALWAYS BEEN A
GREAT SUPPORTER OF THIS.
AND HAS REALLY A REMARKABLE
CAPACITY TO GENERATE CAMP SONGS.
HE HAS A REAL TALENT FOR THIS.
THE ONE THING THAT I WANT TO
MENTION IS, YOU KNOW, THE TALENT
SHOW COULD GO ON FOR QUITE SOME
TIME AND BE KIND OF PAINFUL AT
TIMES TO WATCH.
BUT THIS YEAR WE HAD A REALLY
REMARKABLE SKIT, YOU'LL SEE THAT
IN THE BOTTOM LEFT-HAND CORNER
THERE.
FIRST TIME I'VE SEEN THIS GOING
THERE FOR 15 YEARS.
THESE LITTLE BOYS STUFFED THEIR
SHIRTS AS MUSCLE MEN, AND
PERFORMED THREE MINUTES OF
FLEXING TO SOME MUSIC.
THE CROWD JUST WENT WILD.
THIS WAS HIGHLY RATED, THE TOP
SKIT OF THE YEAR OF THE TALENT
SHOW.
NEXT SLIDE.
WE TAKE THEM SWIMMING.
THIS IS A PATIENT WHO IS
WHEELCHAIR BOUND, HAD NEVER BEEN
IN A POOL.
THE COUNSELORS FIGURED OUT A WAY
TO WRAP HIM IN FLOTATION DEVICE
AND GET HIM INTO THE POOL FOR
THE FIRST TIME AND SO WE DO
REALLY INCREDIBLE THINGS LIKE
THAT AND TO SEE THE SMILE ON
THESE KIDS' FACES WHEN THEY DO
SOMETHING LIKE DO KARATE OR PET
A BABY GOAT AT FARM DAY IS
REALLY A REMARKABLE THING.
NEXT SLIDE.
WE HAVE THAT BEAUTIFUL LAKE
THERE WHERE WE CAN DO THINGS
LIKE FISHING TOURNAMENT, WE HAVE
A CREEK WHERE THEY DO CREEPY
CREEK CRITTERS AND PULL WEIRD
THINGS FROM UNDER ROCKS.
TEENS CAN DO A THING CALLED THE
TEEN CHALLENGE, WHERE THIS IS A
ROPES COURSE WITH ZIP LINES AND
THINGS LIKE CLIMBING WALLS WHERE
THEY CAN CHALLENGE THEMSELVES TO
DO SOMETHING, BUILDING
CONFIDENCE, BUILDING TEAM WORK,
AND DOING REALLY INCREDIBLE
THINGS.
YOU'LL SEE ONE BOY DOING THE
LEAP OF FAITH, WHERE YOU CLIMB
TO THE TOP OF A 50-FOOT POLE,
PULL YOURSELF ONTO THE TOP OF
THAT AND THEN THROW YOURSELF OFF
TOWARDS THAT BALL.
THIS IS SOMETHING THAT I'VE
NEVER DONE BUT I LOVE TO WATCH
THEM DO IT BECAUSE IT REALLY IS
INCREDIBLE THING TO WATCH THESE
KIDS PUSH THEMSELVES TO DO
SOMETHING THAT THEY ARE NOT USED
TO DOING.
NEXT SLIDE.
DONNA HAS RUN A PROGRAM CALLED
MINAHOONEY SCIENCE CAMP TEACHING
ABOUT DNA AND THINGS WE MAKE UP
ABOUT SCIENCE, A FUN PROGRAM
THROUGH THE WEEK DOING THAT.
WE HAVE HORSES, HORSEBACK RIDING
CLASS, WOOD WORKING OR OTHER
CLASSES SET UP FOR THEM.
A BIG FEATURE OF THIS IS WE ALSO
GIVE THEM A LOT OF SUGAR THROUGH
THE WEEK.
NEXT SLIDE.
SO, LISTEN, I REALLY APPRECIATE
THE TIME TO COME OUT HERE AND
TELL YOU ABOUT THIS WONDERFUL
PROGRAM.
I HOPE THAT AS YOU SEE THIS, YOU
WILL WANT TO SUPPORT US AND GET
INVOLVED.
WE GO OUT EVERY AUGUST FOR ONE
WEEK.
AND YOU CERTAINLY WOULD BE
INVITED TO COME ON VISITOR NIGHT
TO SEE THIS LIVE AND IN PERSON.
SO, AGAIN, I APPRECIATE YOUR
TIME AND WOULD TAKE ANY
QUESTIONS THAT COME UP.
>> GREAT.
>> THE PROGRAM LOOKS
OUTSTANDING.
THANKS FOR THE GREAT OVERVIEW.
HAVE THERE BEEN ANY OTHER
CLINICAL CENTERS AROUND THE
COUNTRY THAT HAVE TRIED TO
REPLICATE THIS?
MODELED AFTER THE GREAT WORK
YOU'VE DONE?
>> YEAH, IT'S ACTUALLY
REMARKABLE.
THERE'S NOW AN ORGANIZATION
CALLED COCA, CAMPING
ORGANIZATION SPECIFICALLY
DEDICATED TO ORGANIZE MULTIPLE
CAMPS RUN ACROSS THE COUNTRY,
OURS WAS ONE OF THE FIRST BUT
IT'S NOW REPLICATED IN MANY
PLACES ACROSS THE COUNTRY.
MOST OF THE BIG PEDIATRIC
ONCOLOGY CENTERS WILL HAVE A
CAMP IN THEIR GEOGRAPHIC REGION,
AND WE ACTUALLY PERIODICALLY
WILL TRAVEL AROUND AND SEE HOW
OTHER CAMPS ARE DOING IT AND
HAVE OTHER CAMPS COME IN AND SEE
HOW WE DO IT AND SO WE SHARE
INFORMATION ACROSS THE CAMPS.
>> [ OFF MIC ]
(INAUDIBLE)
>> DR. DEVASKAR?
>> CAN YOU HEAR ME?
>> YES.
>> THANK YOU.
THANK YOU FOR THE WONDERFUL
PRESENTATION, HAVING
PARTICIPATED IN CAMPS MYSELF.
I WONDERED ABOUT THE FUNDING, IS
IT ALL FROM NIH OR DO YOU HAVE
SOME PRIVATE PARTNERSHIPS?
>> YEAH, THE MEDICAL SUPPORT
COMES FROM THE CLINICAL CENTER,
AND THEN THIS 501(c)3 A LONG
TERM PARTNERS CALLED SPECIAL
LOVE IS -- THEY ARE REALLY IN
CHARGE OF THE PROGRAMMING AND
SORT OF THE PATIENT COLLECTION,
AND HELPING US PULL OFF THE
CAMP.
SO THEY DO A LARGE -- THEY DO
HAVE A LARGE PARTNERSHIP WITH US
IN PULLING THIS OFF, SO THAT IS
OUR FUNDING STREAM.
>> THANK YOU.
>> GO AHEAD.
>> SORRY.
IF YOU EVER NEED -- I LIVE 20
MINUTES FROM HERE, IF YOU NEED
VOLUNTEERS TO DRIVE STUFF DOWN
TO FRONT ROYAL I'D BE HAPPY TO
DO IT.
>> I'M GROWING TO WRITE YOUR
NAME DOWN, YEAH.
>> SO RANDY SCHOOLS WAS
ADMINISTRATOR HERE INVOLVED I
BELIEVE WITH DR. PIZO SETTING UP
THE INITIAL CAMP.
FIRST, JACK, WE EXPECT GREAT
THINGS SINCE DR. PIZO WAS THE
DEAN OF THE SCHOOL OF MEDICINE
AT STANFORD WE'RE EXPECTING THE
SAME OUT OF YOU SOMEDAY.
>> SURE.
>> RANDY SCHOOLS WAS THE
ADMINISTRATOR.
ONE OF RANDY'S FAVORITE STORIES
IS TALKS ABOUT HIS SECRETARY
RUNNING INTO HIS OFFICE ONE DAY
AND SAID, MR. SCHOOLS, PAUL
NEWMAN IS ON THE PHONE, WOULD
LIKE TO TALK TO YOU.
I THINK YOU CAN SEE THAT.
THE WAY THE CAMP RUNS IS A
PARADIGM FOR THE WAY WE DO
RESEARCH.
YOU PLAN EVERYTHING.
YOU OVERRESOURCE.
AND YOU HAVE CONTINGENCY PLANS
FOR THINGS YOU DIDN'T PLAN.
IT IS ACTUALLY THE WAY YOU --
IT'S A PERFECT PARADIGM FOR
CONDUCTING HIGH RISK, VERY
COMPLEX FIRST-IN-HUMAN KINDS OF
PROTOCOLS.
AND IT CAME TO ME IN MY FIRST
VISIT OUT THERE THAT THEY DO
EVERY YEAR WHAT WE DO EVERY TIME
WE SET UP A NEW PROTOCOL, WHAT
IT'S GOING TO INVOLVE.
JACK TALKED A LITTLE BIT ABOUT
THE CHALLENGES OF STAFFING.
AND I'LL TALK UNTIL NINA TELLS
ME OR TARA TELLS ME I HAVE TO
SHUT UP BUT WE -- DUE TO SOME
INTERPRETATIONS OF THE FEDERAL
TORT CLAIMS ACT, WE NO LONGER
CAN TELL VOLUNTEERS THAT THEY
ARE GOING TO BE COVERED.
NOW, WE HAVE THE SUPPORT OF THE
NIH LEADERSHIP AND DR. SCHOR IS
AMONG OUR BIGGEST SUPPORTERS TO
TRY TO GET SOMETHING DONE ABOUT
THAT.
AND IT'S NOT JUST AT CAMP
FANTASTIC.
THERE ARE OTHER ASPECTS OF THE
OPERATION AT THE NIH WHERE
RETIREES, PEOPLE WHO HAVE
COLLABORATED WITH THE NIH FOR
YEARS AND YEARS AND NOW ARE
RETIRED AND WANT TO CONTINUE TO
BE INVOLVED, WE HAVE A NUMBER OF
OTHER AREAS WHERE THE USE OF
VOLUNTEERS IS REALLY, REALLY
IMPORTANT.
WE HAVE TO BE ABLE TO ASSURE
THEM.
ANOTHER POINT TO MAKE IS THAT
OTHER FEDERAL AGENCIES HAVE BEEN
ABLE TO INCORPORATE THE COVERAGE
OF FTCA INTO LAW, AND WE WILL
ADVOCATE FOR THE SAME THING AND
KEEP PUSHING AS HARD AS WE CAN
UNTIL WE GET THE SAME
PROTECTION.
>> THIS IS THE THIRD TIME THIS
HAS HAPPENED, ABOUT 20 YEARS AGO
(INAUDIBLE) SO WE COULD BRING
VOLUNTEERS WHO ACTUALLY COULD DO
THINGS IN THE CLINICAL
DEPARTMENT.
FIFTEEN YEARS AGO THIS CAME UP
AGAIN.
AND, YOU KNOW, I HOPE THIS IS A
CYCLE THAT WE'RE AT THE BOTTOM
AND COME BACK VERY SOON.
>> IT'S WHY WE NEED TO GET IT
WRITTEN DOWN AND IN LAW.
>> THIS AFFECTS -- DOES THIS
PROBLEM AFFECT SPECIAL
VOLUNTEERS LIKE I AM TO NIH AS
WELL AS SGEs?
>> IT MOSTLY AFFECTS THOSE WHO
HAVE ANY KIND OF CLINICAL ROLE.
>> OH, OKAY.
>> DO YOU GET ANY SUPPORT FROM
FRIENDS OF THE CLINICAL CENTER
PATIENTS?
>> FOR SURE.
I MEAN, THE FRIENDS OF THE
CLINICAL CENTER PATIENTS, THE
FAMILIES ARE SUPER SUPPORTIVE OF
ALL OF THIS.
>> THE ORGANIZATION.
>> YEAH.
>> (INAUDIBLE)
>> DAVID, I'M NOT SURE THAT THE
FRIENDS OF PATIENTS IS INVOLVED
AT THE PRESENT TIME BUT WE CAN
TALK TO JERRY NEXT WEEK AT PAG
AND FIGURE IT OUT.
>> DR. SCHOR, DID YOU HAVE A
COMMENT?
>> YEAH, I MEAN, I THINK WE HAVE
BEEN ADVISED, AND I'VE BEEN A
VERY LARGE THORN IN THE SIDE OF
THE PEOPLE INVOLVED, BUT WE HAD
BEEN INVOLVED THAT IT WOULD TAKE
A LEGISLATIVE ACTION TO RESTORE
THE SPECIAL VOLUNTEERS TORT
CLAIM COVERAGE AND I GUESS I
DON'T HAVE TO SAY TO THIS GROUP
THAT THE LEGISLATURE AND FRANKLY
THE LEGISLATIVE GROUP AT NIH HAS
BEEN INVOLVED IN MANY, MANY
OTHER THINGS AT THIS POINT.
I THINK ONCE WE HAVE OUR
DIRECTOR AND ONCE THE HOUSE HAS
ITS SPEAKER THIS MAY GET A
LITTLE BIT EASIER TO ENACT.
>> YEAH, I'LL JUST GIVE A
CONCRETE EXAMPLE.
THERE'S AN ORTHOPEDIC SURGEON
WHO HAS BEEN PART OF THIS FOR
ABOUT 20 YEARS, THERE'S A
CRITICAL CARE DOCTOR WHO WAS
SORT OF PARTNERED WITH ME FOR
THE PAST 10 YEARS, AND THEY
REALLY COULDN'T PRACTICE THIS
YEAR OUT THERE.
AND SO ME AS A PEDIATRIC
ONCOLOGIST COULD NOT HAVE THAT
KIND OF SUPPORT BEHIND ME WAS A
LITTLE BIT MORE NERVE-RACKING
THIS YEAR SO I WOULD REITERATE
AND APPRECIATE ANY EFFORTS WE
CAN TO SORT OF FIGURE OUT HOW TO
MAKE THIS HAPPEN FOR US.
>> IF SOMEONE CAN VERY QUICKLY
WHEN YOU SAY VOLUNTEERS DO NOT
HAVE COVERAGE, DO YOU MEAN LIKE
INSURANCE OR JUST VERY QUICKLY
EXPLAIN WHAT THAT MEANS, TORT
COVERAGE.
>> MEANS THEY ARE NOT PROTECTED
FROM -- THEY WILL NOT BE COVERED
UNDER THE FEDERAL TORT CLAIMS
ACT SHOULD SOMEBODY FILE A SUIT
OR CLAIM AGAINST -- THAT
INVOLVED ANY ACTION THAT THEY
WERE INVOLVED WITH.
>> ANY OTHER QUESTIONS?
>> A FINAL QUESTION, WHAT SEEMS
TO BE THE FAVORITE ACTIVITY OF
THE KIDS OUT THERE?
>> OH, I WOULD SAY HORSEBACK
RIDING AND THERAPEUTIC HORSEBACK
RIDING IS PRETTY POPULAR BUT
ALSO VERY TOUGH TO GET THEM OUT
OF THE POOL.
AND SO IT'S HARD TO SAY.
BUT I THINK THOSE ARE PROBABLY
TWO THAT ARE VERY POPULAR.
>> GREAT.
THANK YOU VERY MUCH.
>> DONNA MAY HAVE AN
ALTERNATIVE.
>> (INAUDIBLE)
GIVING THEM THE OPPORTUNITY
INSTEAD OF BEING PATIENT IN THE
HOSPITAL TO BE KIND OF A KID,
ABLE TO HAVE A LITTLE BIT OF "
I'M IN CONTROL HERE" AND ALSO
PEER SUPPORT.
A LOT OF TIMES THAT CHANCE,
INTENTIONAL PROGRAM, GIVING THEM
AN OPPORTUNITY TO TAKE THEIR
PROSTHETIC LEG OR WIG OFF, A
SAFE ENVIRONMENT TO DO THAT AND
KNOW THEY ARE NOT ALONE.
>> YEAH, IT'S REMARKABLE.
THESE KIDS COME BACK, BACK
MULTIPLE YEARS, AND THEY SEE THE
SAME PEER GROUP.
AND THEY REALLY FORM VERY TIGHT
BONDS WITH EACH OTHER, WHICH IS
A VERY POWERFUL THING WHEN YOU
KNOW ANOTHER KID THAT'S GOING
THROUGH WHAT YOU'RE GOING
THROUGH.
SO, YEAH, THANK YOU SO MUCH.
>> THANK YOU VERY MUCH,
APPRECIATE IT.
NEXT PRESENTER IS DR. JORDAN,
CHIEF NURSE OFFICER, PROVIDING
THE LATEST UPDATE ON CLINICAL
CENTER MAGNET JOURNEY.
SHE'S A FAMILIAR FACE TO OUR
BOARD, ON BEHALF OF OUR MEMBERS
I OFFER YOU AGAIN A WARM
CONGRATULATIONS ON YOUR
APPOINTMENT IN JULY AS CHIEF
NURSING OFFICER.
FEW WOULD ARGUE THIS IS ONE OF
THE MOST CRITICAL LEADERSHIP
POSITIONS IN ANY HOSPITAL, AND
WE'RE CERTAINLY DELIGHTED YOU
ARE ASSUMING THIS ROLE
SEAMLESSLY, PERFECTLY POSITIONED
FOR THE DUTIES AND
RESPONSIBILITIES NOW AND FOR
WHAT LIES AHEAD.
>> THANK YOU SO MUCH.
THAT IS SO KIND.
I'M HONORED TO HAVE BEEN AWARDED
THIS POSITION, AND I JUST HAVE
TO SAY WORKING AT THE CLINICAL
CENTER, THIS IS THE LONGEST I'VE
WORKED ANYWHERE.
I'VE BEEN HERE FOR TEN YEARS.
IT REALLY IS A REMARKABLE PLACE
WITH SO MANY OPPORTUNITIES.
DR. SHERN HAD TO LEAVE BUT HE
WAS RIGHT, THAT WAS THE BEST
PRESENTATION ALL DAY, I HAVE TO
FOLLOW HIM BUT I'M EXCITED ABOUT
MY PRESENTATION TOO.
I WANT TO ADD CAMP FANTASTIC IF
YOU'VE NEVER HAD THE
OPPORTUNITY, NEXT YEAR PLEASE GO
OUT AND VISIT.
IT REALLY IS JUST A HEARTWARMING
PLACE.
WE'RE SO HONORED WE'RE ABLE TO
SUPPORT CAMP FANTASTIC.
WE SEND OUR NURSES THERE, OUR
PEDIATRIC AND OTHER NURSES, AND
THEY LOVE IT.
SO, THANK YOU ALL SO MUCH.
I'M HERE THIS MORNING TO PROVIDE
AN UPDATE ON OUR MAGNET JOURNEY.
NEXT SLIDE PLEASE.
SO, FOR OUR PROGRESS REPORT
WE'LL TALK ABOUT WHERE WE ARE
WITH OUR JOURNEY MILESTONES,
WITH OUR MAGNET DOCUMENT, I'LL
PROVIDE AN EXAMPLE FROM THE
DOCUMENT AND ALSO REVIEW SOME
PATIENT ENGAGEMENT METRICS.
NEXT SLIDE.
SO, ON OUR JOURNEY AS DR. GILMAN
POINTED OUT DURING HIS REMARKS
WE SENT OUR APPLICATION TO
DECLARE OUR INTENT TO BECOME A
MAGNET DESIGNATED ORGANIZATION
LAST JANUARY AND WE'RE NOW IN
THE THICK OF PREPARING THE
DOCUMENT.
IT REALLY IS A VERY LARGE
UNDERTAKING, THERE'S OVER 90
STANDARDS FOR WHICH WE HAVE TO
PROVIDE THE STORIES, EVIDENCE
AND METRICS REGARDING THAT.
AND HAVE IT IN A COHESIVE AND
READABLE FORMAT BECAUSE THE
APPRAISERS FROM AMERICAN NURSES
CREDENTIALING CENTER, THIS WILL
BE THEIR FIRST LEARNING OF THE
CLINICAL CENTER.
SO WE HAVE TO WRITE THE DOCUMENT
IN A WAY THAT TELLS THE STORY.
WE'RE PLANNING TO SUBMIT THE
DOCUMENT ON APRIL 1 OF NEXT YEAR
AND THEN FOLLOWING THAT THERE
WILL BE A PERIOD OF PUBLIC
COMMENT SO WE WILL MAKE THE
DOCUMENT AVAILABLE TO ALL.
AND THEN WE'RE VERY OPTIMISTIC
THAT THE APPRAISERS WILL SCORE
OUR DOCUMENT AS ACCEPTABLE AND
THEN PLAN THEIR SITE VISIT TO
US.
SO WHERE WE WITH THE DOCUMENT,
SO THE MAGNET MODEL IS DIVIDED
INTO FOUR COMPONENTS.
AND SO THERE ARE STANDARDS IN
EACH.
TRANSFORMATIONAL LEADERSHIP,
STRUCTURAL EMPOWERMENT,
EXEMPLARY PROFESSIONAL PRACTICE,
NEW KNOWLEDGE AND INNOVATIONS
AND IMPROVEMENTS.
THIS SLIDE IS A COUPLE WEEKS
OLD.
WE HAVE MORE IN DRAFT.
AND REDUCING THE NUMBER OF
EXAMPLES TO BE IDENTIFIED, AND
WE HAVE MORE IN THE COMPLETE
COLUMN.
NEXT SLIDE PLEASE.
I WANTED TO SHARE AN EXAMPLE OF
ONE OF THE STANDARDS AND
NARRATIVES WE'RE PROVIDING.
THE STANDARD THIS COMES FROM THE
EXEMPLARY PROFESSIONAL PRACTICE
CHAPTER, ONE EXAMPLE WITH
SUPPORTING EVIDENCE OF NURSES AS
PARTICIPANTS OF AN
INTERPROFESSIONAL TEAM APPLYING
AVAILABLE RESOURCES TO ADDRESS
ETHICAL ISSUES RELATED TO
CLINICAL PRACTICE.
THE EXAMPLE THAT WE'RE PROVIDING
COMES FROM THE ETHICAL
CONSIDERATION IN THE
INTERPROFESSIONAL CARE PLANNING
FOR PARAPLEGIC PATIENT
PARTICIPATING IN A CLINICAL
TRIAL.
SO, WHAT HAPPENED, 5 NORTHWEST,
ONE OF OUR MEDICAL SURGICAL
UNITS WE HAVE RADIATION SAFETY
ROOMS.
THESE ARE LEAD-LINED ROOMS.
SO PATIENTS WILL HAVE
RADIOLOGICAL IMPLANT INSERTED
AND STAY WITHIN THIS ROOM.
SO THERE'S A LOT OF TRAINING AND
A LOT OF PROTECTIONS IN PLACE SO
THAT ANYONE WHO IS INTERACTING
WITH THE PATIENT DOESN'T HAVE AN
EXPOSURE.
WE HAVE THE OPPORTUNITY TO
PROVIDE CARE FOR A PATIENT WHO
WAS PARAPLEGIC AND DID REQUIRE
MORE INTENSE SUPPORT THAN WHAT
OTHER PATIENTS HAVE REQUIRED.
A LOT MORE HANDS-ON CARE.
THERE WAS A LOT OF PLANNING
PERFORMED WITH THE MEDICAL TEAMW
ALL OF THE DIFFERENT DEPARTMENTS
IN THE CARE AND PLANNING FOR
THIS PATIENT, AND WE ALSO
INVOLVED OUR ETHICS TEAM JUST TO
MAKE SURE THAT WE WERE MEETING
THE NEEDS OF THE PATIENT WHILE
ALSO MEETING THE NEEDS OF THE
STAFF.
AND SO WE DID -- WERE ABLE TO
PROVIDE ADDITIONAL RESOURCES TO
5 NORTHWEST, INCREASE THE
STAFFING, SO WE COULD PROVIDE
SAFE AND EXCELLENT CARE TO THIS
PATIENT.
AND IT WAS SUCCESSFUL.
THE PATIENT WAS VERY GRATEFUL TO
HAVE BEEN ABLE TO PARTICIPATE IN
THIS STUDY, AND ALSO FOR THE
KIND AND CARING COMPASSIONATE
CARE SHE RECEIVED DURING HER
HOSPITALIZATION, THIS IS AN
EXEMPLAR OF THE WORK THAT
HAPPENS EVERY DAY IN THE
CLINICAL CENTER SO WE'RE SO
PLEASED TO BE ABLE TO SHARE THIS
IN OUR MAGNET DOCUMENT.
NEXT SLIDE PLEASE.
IN ADDITION TO ALL THE WRITING
AND COLLECTION OF EVIDENCE FOR
THE DOCUMENT, WE ALSO HAVE TO
MAKE SURE THAT EVERYBODY KNOWS
WHAT IS MAGNET.
I WAS WALKING WITH DR. CHEN TO
THE BUILDING THIS MORNING
REMARKING ON WHAT I'VE SEEN AS
PART OF THE MAGNET JOURNEY, IT
IS TRANSFORMATIVE.
WE'RE SEEING A CHANGE IN THE
CULTURE AS FAR AS HOW WE TALK
ABOUT EVIDENCE-BASED PRACTICE,
MAKING SURE WE'RE COLLECTING PRE
AND POST DATA, WE'RE REALLY GOOD
ON PROCESS BUT REALLY LOOKING AT
OUR OUTCOME MEASURES, THAT ALSO
PART OF THIS TOO IS INTERACTING
WITH THE STAFF OF THE CLINICAL
CENTER AND OUR INSTITUTE
PARTNERS SO THEY UNDERSTAND WHAT
IS MAGNET.
IT'S LIKE THIS NEBULOUS WORD.
SO WE'VE STARTED MAGNET ROUNDS
AND WE'RE HOSTING THOSE 24/7.
I CAME IN A COUPLE WEEKS AGO
INTERACTED ON THE WEEKEND
TALKING ABOUT MAGNET.
THE FOCUS ON PEER FEEDBACK, WE
IMPLEMENTED A PEER FEEDBACK IN
THE NURSING DEPARTMENT SEVERAL
YEARS AGO, REALLY TALKING ABOUT
IT AND WHAT DOES IT MEAN AND HOW
CAN IT BE MEANINGFUL.
THE GOAL IS TO REACH MAJORITY OF
THE STAFF.
SO, MAGNET NURSE LEADERS AS WELL
AS MEMBERS OF THE MAGNET
DOCUMENT TEAM AND MAGNET
AMBASSADORS DEPARTMENT LEVEL
CHAMPIONS PARTICIPATING IN THE
ROUND.
WE'RE HOSTING A MAGNET FAIR
NEXT THURSDAY ON THE FAES
TERRACE IN CLINICAL CENTER RUN
BY MAGNET AMBASSADORS WITH
TABLES SET UP, GAMES, PRIZES,
FOCUSED ON EDUCATION AND
ENGAGEMENT AND WE'RE INVITING
ALL THE PEOPLE THAT WORK IN THE
CLINICAL CENTER TO COME AND
LEARN MORE ABOUT MAGNET.
I THINK THEY HAVE DONE A COOL
JOB, SET UP AS A JOURNEY WITH A
PASSPORT, THEY WILL GET STAMPS
AS THEY VISIT THE COUNTRIES OF
MAGNET SO IT WILL BE A REALLY
FUN TIME.
NEXT SLIDE PLEASE.
I DO REALIZE THAT FOR CLINICAL
CENTER AND NIH STAFF IT'S ALSO
THE COMBINED FEDERAL CAMPAIGN
KICKOFF AT THE SAME TIME BUT WE
LOOK FORWARD TO PEOPLE BEING
ABLE TO JOIN US AFTER THE
KICKOFF.
SO I MENTIONED THAT WE HAVE
VARIOUS STANDARDS AND METRICS WE
HAVE TO SUBMIT SO WHAT I WANTED
TO SHARE WITH YOU TODAY ARE THE
METRICS AND STANDARDS AROUND
PATIENT ENGAGEMENT.
SO DR. GILMAN MENTIONED PRESS
GANEY, THAT IS THE COMPANY THAT
WE USE TO MEASURE OUR PATIENT
SATISFACTION AND PATIENT
ENGAGEMENT.
WE HAVE TWO EXEMPLARY
PROFESSIONAL PRACTICE STANDARDS
IN WHICH WE HAVE TO SELECT FOUR
OF NINE CATEGORIES.
THEY GIVE US THE CATEGORIES.
WE SELECT FOUR OF THEM FOR BOTH
INPATIENT AND AMBULATORY
SETTINGS.
WE HAVE TO OUTPERFORM THE
BENCHMARK THAT'S PROVIDED BY THE
VENDORS NATIONAL DATABASE, AND
SO WE'VE CHOSEN THE MEAN, TO
EXCEED THE MEAN.
AND THE EXPECTATION IS THAT FOR
EACH CATEGORY THE MAJORITY OF
THE UNITS HAVE TO OUTPERFORM
THAT NATIONAL MEASURE OF CENTRAL
TENDENCY.
WE'VE CHOSEN THE CATEGORIES OF
COURTESY AND RESPECT, PATIENT
ENGAGEMENT OR PATIENT-CENTERED
CARE, RESPONSIVENESS AND SAFETY.
ON THE SURVEYS THE PATIENTS
RECEIVE AFTER DISCHARGE OR AFTER
THEIR VISIT, THERE ARE QUESTIONS
IN EACH OF THESE CATEGORIES.
NEXT SLIDE.
SO, THIS TABLE DEMONSTRATES
THREE QUESTIONS UNDER THE
COURTESY AND RESPECT CATEGORY.
NURSES ATTITUDE TOWARDS YOUR
REQUEST, COURTESY AND RESPECT OF
THE NURSES, CARE TEAMS CONCERN
FOR YOUR OR YOUR CHILD'S
PRIVACY, THAT'S ALSO IN OUR
PEDIATRIC AREAS.
SO, IN THE YELLOW IS WHERE THE N
WAS TOO SMALL, NUMBER OF
RESPONSES WAS TOO SMALL FOR
PRESS GANEY TO PROVIDE US DATA
FOR THAT.
SO THOSE ARE EXCLUDED.
GREEN BOXES SHOW WHERE WE'RE
ABOVE THE MEAN AND THE RED BELOW
THE MEAN.
AND SO WE ALWAYS HAVE
OPPORTUNITY FOR IMPROVEMENT.
WHAT'S DEMONSTRATED FOR OUR
INPATIENT AREAS, ALSO INCLUDES
ICU, THAT'S THE 3 SOUTHWEST
SOUTH, ICU HAS QUITE A BIT OF
YELLOW, IT'S AGAIN THE NUMBER OF
RESPONSES IS QUITE SMALL THERE.
1 SOUTHWEST IS OUR INPATIENT
CHILD PSYCHIATRIC UNIT, THAT TOO
WE'VE HAD A VERY SMALL NUMBER OF
PATIENTS SO WE JUST DON'T HAVE
THE DATA TO SHOW.
AGAIN, WE HAVE TO PROTECT THE
ANONYMITY OF THOSE WHO ARE
PROVIDING THE DATA.
BUT THE GREAT NEWS IS THAT OF
OUR EIGHT UNITS THAT ARE
ELIGIBLE, THOSE ARE THE ONES
THAT HAVE DATA, WE'RE AT 100%.
NOW, THIS IS A ROLLING
BENCHMARK, SO WE CANNOT REST ON
OUR LAURELS BECAUSE OUR -- THIS
TABLE IS FROM THE SECOND QUARTER
OF 2023 CALENDAR YEAR, SO BY THE
TIME WE SUBMIT OUR DOCUMENT IN
APRIL IT WILL BE AS OF FOURTH
QUARTER OF 2023.
SO WE ALWAYS HAVE TO BE LOOKING
AT OUR DATA AND MAKING SURE THAT
WE ARE DOING WHAT WE CAN TO MEET
THE NEEDS OF OUR PATIENTS.
NEXT SLIDE PLEASE.
AMBULATORY CARE, THIS INCLUDES
OUR PATIENT CLINICS, PROCEDURAL
AREAS, O.R., PACU, POST-ANSWER
A NESTHESIA CARE UNIT.
CARE COORDINATION, CAREFUL
LISTENING, SAFETY, SERVICE
RECOVERY.
NEXT SLIDE PLEASE.
SO EXAMPLE I CHOSE TO SHOW
SAFETY CATEGORY, FOR THE
QUESTIONS UNDER SAFETY CATEGORY
HOW WELL THE STAFF PROTECTED
YOUR SAFETY BY WASHING HANDS, ET
CETERA, EXTENT TO WHICH STAFF
WASHED THEIR HANDS, DEGREE OF
SAFETY AND SECURITY YOU FELT IN
OUR FACILITY, AND YOUR TRUST IN
SKILL OF STAFF WHO PROVIDED YOUR
TEST OR TREATMENT.
YOU CAN SEE THIS IS NOT FOCUSED
SOLELY ON NURSING BUT ON THE
PEOPLE WHO WORK IN THE CLINICAL
CENTER.
AGAIN, WE HAVE A COUPLE OF AREAS
THAT THE VOLUME IS TOO SMALL OR
NUMBER OF RESPONSES TOO LOW TO
INCLUDE IT.
BUT OVERALL, OUT OF OUR 16
ELIGIBLE UNITS, THEY ARE ALL
EXCEEDING THE BENCHMARK.
THERE'S A CERTAIN NUMBER OF
QUARTERS FOR WHICH THERE
EXCEEDS.
AGAIN SOME RED.
WE ALWAYS HAVE OPPORTUNITY FOR
IMPROVEMENT.
BUT THE GOOD NEWS IS WITH THE
PATIENT SATISFACTION SURVEYS
THAT WE HAVE AS OF THE SECOND
QUARTER OF THIS YEAR, SO THAT'S
THROUGH JUNE 30 OF THIS YEAR,
WE'RE IN GOOD SHAPE BUT WE HAVE
TO CONTINUE TO STRIVE OF THE
WE'LL BE SUBMITTING THE DATA IN
THIS TYPE OF FORMAT AS PART RT
OF OUR MAGNET DOCUMENTATION.
HELEN MAYBERRY IS OUR PROGRAM
DIRECTOR FOR NURSING QUALITY AND
SAFETY.
SHE AND HER TEAM, WE HAVE A
WONDERFUL MANAGEMENT ANALYST,
CELINE, WHO PUTS THIS DATA
TOGETHER FOR US.
RACHEL IS OUR MAGNET PROGRAM
MANAGER COORDINATING OUR EFFORTS
AND DOING A WONDERFUL JOB.
NEXT SLIDE.
THAT'S THE END OF MY
PRESENTATION.
THANK YOU.
>> THANKS.
ARE THERE ANY QUESTIONS?
DAVID?
>> TO BEGIN GREATER
ENCOURAGEMENT OF PARTICIPATION
ARE THESE THINGS OUT AND VISIBLE
TO THE STAFF THROUGH THE
INTERNET, BY ROTATING IN THE
SCREEN SAVERS ON THE DESKTOP OR
ELECTRONIC NEWS INFORMATION
BOARDS?
>> SO, THE TABLES, THEY ARE NOT.
THAT IS A GREAT SUGGESTION.
BUT WE DO HAVE DATA THOUGH THAT
DOES GO ON THE INTRANET AND THAT
IS THROUGH I BELIEVE DR. GILMAN
SPOKE TO DR. LANG'S INFORMATION
SO WE DO PUT THE PATIENT
EXPERIENCE DATA.
WE'VE BEEN WORKING VERY CLOSELY
WITH PRESS GANEY THROUGH THE
NURSING DEPARTMENT AND CLINICAL
CENTER AT LARGE, TEACHING NURSE
MANAGERS HOW TO LOOK AT THE
PATIENT, EXPERIENCE METRICS, AND
SO WE'VE BEEN WITH PRESS GANEY
TWO YEARS, WORKING CLOSELY
LOOKING AT THE DATA, USING IT,
DISSEMINATING IT SO PEOPLE ARE
FAMILIAR WITH IT.
SO IT'S STILL A WORK IN
PROGRESS.
>> THAT'S THE STATS.
>> YES.
>> THE ACTUAL GOALS, THE THINGS
YOU'RE TRYING TO ENCOURAGE, DO
THEY FLIP THROUGH ON THE WAY
OTHER INFORMATIONAL GOALS LIKE
HAND WASHING DID ON THE SCREEN
SAVER?
>> NOT YET.
THAT'S A GREAT SUGGESTION.
>> TWO-PART QUESTION BUT THE
ANSWER MAY BE THE SAME.
WHICH OF THE STANDARDS ARE MOST
DISTINCT FOR THE NIH TO ACHIEVE
VERSUS OTHER MAGNET
INSTITUTIONS?
AND WHICH ARE MOST DIFFICULT OR
CHALLENGING FROM YOUR POINT OF
VIEW?
>> THAT'S AN EXCELLENT QUESTION.
SO, IN THE CHAPTER, I'M CALLING
THEM CHAPTERS, NEW KNOWLEDGE,
INNOVATION, IMPROVEMENT, IS
WHERE NURSING, EVIDENCE-BASED
PROJECTS, THAT CHAPTER WE'RE
JUST ABOUT DONE WITH ALL OF IT.
SO THAT WE'RE GOOD.
THANKS IN LARGE PART TO DR. GWEN
WALLEN AND HER TRANSLATIONAL AND
BIOBEHAVIORAL HEALTH AND
DISPARITIES RESEARCH BRANCH,
WE'RE USING A NUMBER OF THE
RESEARCH -- NURSING RESEARCH
STUDIES FROM THAT.
SOME OF THE CHALLENGES ARE WHERE
DATA, OUTCOMES DATA, IS
REQUIRED.
WE JUST HAVEN'T BEEN THINKING
THAT WAY, AS WE DO A PROJECT,
RIGHT?
BUT THAT'S PART OF THE
TRANSFORMATION THAT I'VE SEEN IS
WE NOW HAVE PEOPLE COLLECTING
PRE-DATA SO THEN WE HAVE THEN
POST FOR OUTCOMES.
WE'RE GOOD WITH PROCESS MEASURES
AND MAKING PROCESS IMPROVEMENT,
BUT IT'S STARTING TO THINK WHAT
ARE OUTCOMES, THAT'S ALSO BEEN A
BIG EDUCATION.
IT'S PATIENT OUTCOMES, IT'S
STAFF OUTCOMES, IT'S IN LARGE
PART.
THANK YOU.
>> THANK YOU.
THANKS FOR YOUR PRESENTATION.
AND LEADERSHIP AND ENERGY AND
PASSION.
I HEARD EARLIER ABOUT THE -- WE
HEARD EARLIER ABOUT THE SAFETY
CULTURE SURVEY THAT WE HOPE TO
CONDUCT.
HAVE YOU YET THOUGHT ABOUT OR
BEEN ABLE TO CONSIDER HOW TO TIE
THE TWO SURVEY RESULTS TOGETHER?
I MEAN, HOW WE TIE TOGETHER
ENGAGEMENT WITH SAFETY, IF WE
SEE A NURSING UNIT WHERE
EVERYONE IS HIGHLY ENGAGED AND
HIGHLY ENERGIZE AND MOTIVATED IS
THAT ALSO A SAFER UNIT FROM THE
STANDPOINT OF A CULTURE OF
SAFETY OR IS THAT PREMATURE ASK
AT THIS POINT?
>> I THINK THAT WOULD BE VERY
INTERESTING TO LOOK AT.
WE DON'T HAVE THOSE TWO
CORRELATED RIGHT NOW.
IT DEPENDS ON HOW WE GET THE
DATA.
IT DEPENDS HOW WE GET RESULTS
BACK.
THEY ARE AT THE UNIT LEVEL, AND
WE HAVE FEDERAL EMPLOYEE
VIEWPOINT SURVEY RESULTS AT UNIT
LEVEL.
THERE'S PERHAPS YOU CAN LOOK TO
SEE IF THERE'S ANYTHING TO LEARN
FROM IT.
I DON'T WANT TO SAY CORRELATIONS
BECAUSE, AGAIN, WE'LL ALSO HAVE
DIFFERENT PEOPLE ARE COMPLETING
THE SURVEYS TOO.
CULTURE OF SAFETY SURVEY IS OPEN
TO EVERYBODY WHO WORKS AT THE
CLINICAL CENTER WHEREAS THE
FEDERAL EMPLOYEE VIEWPOINT
SURVEY IS GEARED TOWARDS
EMPLOYEES.
BUT STILL IT'S AN INTERESTING
THING TO LOOK AT.
>> A QUESTION FROM ZOOM FROM
DAVID.
>> TERRIFIC PRESENTATION.
IT'S WONDERFUL THAT THE NIH
CLINICAL CENTER IS GOING FOR
MAGNET STATUS.
I'M CURIOUS THAT NATIONALLY
CLINICIAN BURNOUT PARTICULARLY
AND NURSING AND STAFFING IS A
MAJOR ISSUE.
HOW DOES THAT AFFECT THIS
ACCREDITATION PROCESS FOR THE
NIH CLINICAL CENTER?
>> WELL, WE FACED SAME
CHALLENGES.
WE HAVE VACANCIES AND
RECRUITMENT CHALLENGES, AS
EVERYONE ELSE.
BUT I THINK THE MAGNET JOURNEY
HAS BEEN KIND OF A RALLY TO
REALLY SHOW HOW WELL WE DO.
IT'S REALLY REFLECTING, IT'S THE
NURSES, THE CAREGIVERS, ALL OF
THE STAFF OF THE CLINICAL
CENTER, IT'S A REFLECTION OF
THEIR WORK.
WE'RE CATALOGING THEIR WORK.
WE WERE AT A CONFERENCE
RECENTLY, THERE WAS SOME OF OUR
STAFF MEMBERS, WE NEED TO BE
PRESENTING HERE BECAUSE WE CAN
HELP PEOPLE.
SO I THINK WHILE THE JOURNEY AND
THE -- IT'S REALLY THE DOCUMENT
WRITING THAT'S REALLY THE
BIGGEST CHALLENGE.
I THINK BEING ABLE TO REFLECT
AND SHOWCASE ALL THE WORK THAT'S
BEING DONE CAN BE A MORALE
BOOSTER.
ALSO THERE ARE THINGS WE LEARN
PERHAPS WHERE WE NEED TO
RESOURCE DIFFERENTLY TOO TO HELP
SUPPORT THOSE AREAS.
WE ALSO RECENTLY PUBLISHED THE
2021-2022 NURSING DEPARTMENT
ANNUAL REPORT, IT WAS DONE
DIFFERENTLY.
AND HAPPY TO SHARE THE LINK TO
THAT TO THE BOARD MEMBERS.
BUT THE FEEDBACK WE'VE SEEN WAS
SO POSITIVE, ESPECIALLY
EVERYONE'S PICTURES IN IT AS
WELL BUT A REFLECTION OF ALL OF
THE WORK THAT'S DONE NOT ONLY IN
THE NURSING DEPARTMENT BUT
THROUGHOUT THE CLINICAL CENTER.
I HOPE I ANSWERED YOUR QUESTION.
THANKS VERY MUCH.
THANK YOU.
OKAY.
IF THERE ARE KNOW OTHER
QUESTIONS, BARBARA, THANK YOU,
WELL DONE.
IT IS INDEED A JOURNEY.
YES.
WE LOOK FORWARD TO UPDATES IN
THE FUTURE.
THANK YOU SO MUCH.
THANK YOU VERY MUCH.
WE'RE JUST A LITTLE BIT BEHIND
BUT WE STILL NEED TO TAKE A
10-MINUTE BREAK.
SO WE'LL BREAK FOR TEN MINUTES.
WE'RE EXCITED TO HEAR FROM
DR. McKEEBY WHO SOLICITED
INPUT FOR CLINICAL CENTER
ELECTRONIC HEALTH RECORD
BUSINESS CASE, AND NOW MORE THAN
FOUR YEARS LATER RETURNS TO
SHARE THE CURRENT STATUS OF THE
EHR AND LOOK AHEAD.
I'LL TURN IT OVER TO YOU.
>> THANK YOU VERY MUCH.
I'LL TRY TO MAKE THIS THE MOST
EXCITING PRESENTATION OF THE
DAY.
THAT'S MY GOAL.
WE MIGHT HAVE TO SING A SONG.
WE'LL FIGURE THAT OUT.
DR. GILMAN THAT IS A SPECIAL
SONG HE LIKES TO SING, WE'LL SEE
IF WE WILL HAVE THAT AS PART OF
THIS.
SO, DR. GILMAN SAYS I'M UNIQUE,
SO YOU'LL SEE THAT DURING THIS
PRESENTATION HOPEFULLY.
DR. SANO HELPED WITH THE SLIDES.
HE'S ARE BASED ON SLIDES DR.
GILMAN CREATED.
WE ADDED A FEW THINGS BUT NOT
MUCH.
I STOLE A LOT OF THE MATERIAL HE
STARTED WITH.
DR. SONO IS LEAVING THE NIH.
I CRIED A FEW TIMES, GOING TO
THE V.A., BUT HE'S HELPED
PRODUCE MANY OF THE DOCUMENTS
THAT ARE NEEDED AS PART OF THE
EHR MODERNIZATION.
NEXT SLIDE.
THIS IS A HIGH VALUED ASSET,
HOMELAND SECURITY WENT THROUGH
ALL THE GOVERNMENT'S SYSTEMS AND
IDENTIFIED HIGH VALUE ASSETS.
THEY IDENTIFIED TOP 10% HIGH
VALUE ASSETS AND HANDED THAT
OVER TO HHS, HEALTH AND HUMAN
SERVICES DECIDED CRIS WAS NUMBER
ONE.
I DIDN'T WANT TO BE NUMBER ONE.
I WANTED TO BE IN THE TOP, AND
THAT WAS GREAT, BUT I DIDN'T
WANT TO NECESSARILY BE NUMBER
ONE.
INDIAN HEALTH SERVICES AND CMS
ONE AND TWO, CRIS BECAME NUMBER
THREE.
SO WHAT THAT MEANS IS EVERY
THREE YEARS THERE'S AN
ASSESSMENT, THEY ASK QUESTIONS,
REVIEW A LOT OF TIMES.
WE'VE GONE THROUGH TWO
ASSESSMENTS, THE FIRST ONE THEY
SAID WE DID A GREAT JOB AND
SHOWED A HEAT MAP WITH ALL RED.
I ASKED IF RED MEANT GOOD.
THEY TOLD ME NO.
BUT WE HAVE THE ANSWERS TO ALL
THE QUESTIONS BUT PART OF THE
ITEM WAS TO MAKE SURE OUR
DOCUMENTATION IDENTIFIED EVERY
SINGLE COMPONENT, EVERY SECURITY
CONTROL THAT THEY WERE
ASSESSING.
THE SECOND TIME WE GOT MORE
GREEN, MORE OPPORTUNITIES.
WE HAD A FEW ITEMS WE HAD TO
ADDRESS PARTIALLY OR THE BIGGEST
ONE WAS ENSURING CRIS AND ITS
SECURITY BOUNDARY WAS SEPARATE
FROM ALL THE OTHER SYSTEMS.
THAT IS SOMETHING WE ARE WORKING
ON.
FIRST ASSESSMENT WE NEEDED TO
ENSURE EVERYTHING WAS ENCRYPTED
IN TRANSIT.
SECOND THEY SAID, OH, NOT ALWAYS
ENCRYPTED BECAUSE YOU NEED TO
SEE WHAT TRAFFIC IS GOING
ACROSS.
WE'VE HAD TO MODIFY OUR
ARCHITECTURE TO ACCOUNT FOR THAT
ASSESSMENT.
THIS IDENTIFIES A DESCRIPTION OF
WHAT CRIS IS FROM A SECURITY
STANDPOINT THAT WE PROVIDE ON
ALL OUR SECURITY DOCUMENTS,
ESPECIALLY FOR THE HIGH VALUED
ASSET.
NEXT SLIDE.
SO, SUMMARIZE CLINICAL --
SUNRISE COMMERCIAL MANAGER IS
THE COMMERCIAL PLATFORM,
CLINICAL RESEARCH INFORMATION
SYSTEM, CRIS.
MY WIFE SAYS CRIS IS MY MOST
IMPORTANT CHILD.
I HAVE ACTUALLY THREE CHILDREN
BUT CRIS IS A VERY IMPORTANT
PART OF MY BEING AND MY LIFE, AT
LEAST IT HAS BEEN.
I WORKED FOR CLINICAL CENTER FOR
32 YEARS, 17 YEARS AS THE CIO,
ALL OF IT ALWAYS OVER THE
MEDICAL INFORMATION SYSTEM.
WE INSTALLED IN 2004, THE BEST
AVAILABLE EHR SOLUTION AT THE
TIME, ESPECIALLY FOR CLINICAL
RESEARCH.
ALLOWS US THE ABILITY TO DO MANY
THINGS, CUSTOMIZE, THE BLESSING
AND CURSE IS WE CAN BUILD
ANYTHING WE WANT AND BUT WE HAVE
TO SUPPORT IT, RIGHT?
SO WE HAVE THAT AS PART OF IT.
STEPHANIE HAS BEEN PART OF A FEW
OPERATIONAL REVIEWS, REVIEWING
DCRI AS WELL AS CRIS, AND WHEN
SHE CAME ONCE I TOLD HER HOW
MANY PROTOCOL ORDER SETS WE
DEVELOP IN A YEAR AND SHE WENT
BACK TO HER PROTOCOL ORDER SET
PEOPLE AND SHE CAME BACK AND
SAID THAT'S NOT POSSIBLE.
THAT IS OUR AMOUNT.
EVEN THOUGH WE HAVE PATIENT
CENSUS IN THE HUNDREDS, CRIS HAS
TO SUPPORT EVERY DIFFERENT
INSTITUTE WORKFLOW, AND SO WE'RE
A LITTLE BIT OF EVERYTHING,
RIGHT?
WE'RE A LITTLE BIT OF CANCER, A
LITTLE BIT OF NEUROLOGY, A
LITTLE BIT OF EVERY COMPONENT OF
EVERY INSTITUTE'S INTRAMURAL
RESEARCH PROGRAM.
AND SO WE HAVE TO BE ABLE TO
CUSTOMIZE AND MEET ALL THOSE
REQUIREMENTS.
SUNRISE HAS GONE THROUGH
DIFFERENT VENDORS, WHEN WE
PURCHASED PROCUREMENT WAS ECLIP
SYS AND THEN ALLSCRIPTS TO
INTEGRATE OUR INPATIENT AND
OUTPATIENT.
WE USE OUR PRODUCT FOR BOTH
INPATIENT AND OUTPATIENT.
WE DON'T HAVE THE AMBULATORY
CARE MODULE.
AND SO WE WERE HOPING ALLSCRIPTS
WOULD FILL THAT HOLE BUT
UNFORTUNATELY THEY DIDN'T.
AND THEY WERE NOW ALTERRA
DIGITAL HEALTH, AND THAT'S
ENTERTAINING AS WELL BECAUSE
WE'RE WORKING THROUGH THE SAME
PROBLEMS THAT WE'VE HAD FOR THE
LAST 15 YEARS, REPEATING A LOT
OF CONVERSATIONS THAT WE'VE HAD
TO UNDERSTAND OUR DIFFERENCES.
AND SINCE WE ARE FOCUSED ON
CLINICAL RESEARCH, NOT
EVERYTHING THAT WORKS IN THE
COMMERCIAL WORLD WILL WORK FOR
US.
AND SOMETIMES WHEN DEVELOPERS
THINK THE COMMERCIAL MARKET,
THEY IMPLEMENT DIFFERENT
COMPONENTS THAT DON'T
NECESSARILY MEET THE CLINICAL
RESEARCH COMPONENT OR HAVE THAT
FLEXIBILITY THAT WE NEED.
NEXT SLIDE.
WE ARE HANDS ANALYTICS STAGE 7,
THE HIGHEST FOR -- THAT'S THE
HIGHEST STAGE.
IT MEANS WE HAVE ADOPTED AND
UTILIZED EMR WELL, WE DON'T
BELIEVE IN PAPER, TRY NOT TO
RELY ON PAPER.
THERE IS PAPER BUT VERY SMALL
AMOUNT OF PAPER AT THE CLINICAL
CENTER.
WE'LL SHOW A PICTURE OF WHERE WE
ARE.
BASICALLY WHEN WE WERE ANALYZED
FOR HANDS ANALYTICS THEY NEEDED
AN HOUR-AND-A-HALF TO REVIEW OUR
MEDICAL RECORD ROOM.
NO, WE SAID YOU ONLY NEED FIVE
MINUTES.
NO, THEY WERE ADAMANT THEY
NEEDED AN HOUR-AND-A-HALF.
I'M LIKE, BUT THERE IS NO ROOM.
SO, FINALLY WHEN THEY WENT OVER
TO OUR HEALTH INFORMATION THEY
REALIZED WE DON'T HAVE SHELVES,
A SMALL SHELF FOR PAPER TO GET
STAND, AT THAT TIME 10 OR 12
RECORDS OR PIECES OF PAPER ON
THE SHELF BECAUSE WE SCAN ON THE
FLOORS.
AND SO WE DON'T HAVE THE PAPER
THAT THEY WERE LOOKING FOR.
SO, THEY WERE SURPRISED BUT THEY
WERE GREATLY APPRECIATIVE OF
WHAT WE WERE TRYING TO SAY.
WE WERE FOR ALLSCRIPTS NUMBER
ONE OR NUMBER TWO OF THE HIMSS
ANALYTICS.
IT WAS GOOD FOR US TO GO THROUGH
TO RECOGNIZE WHERE WE ARE AND
THAT'S WHY WE WENT THROUGH THAT
CERTIFICATION.
NEXT SLIDE.
AND SO THE BOTTOM LINE, DR.
GILMAN'S SLIDE THAT I'M STEALING
AND USING WHENEVER I GO.
THE CURRENT EHR IS 19 YEARS OLD,
THE DAY MY WIFE MOVED TO
MICHIGAN, I'M NOT SURE THE
RELATIONSHIP, IT WAS DEFINITELY
A STRESSFUL DAY BUT IT'S BEEN 19
YEARS THIS AUGUST.
AND IT IS REACHING ITS END OF
USEFUL LIFE.
WE ARE ON THE CURRENT VERSION,
WE'LL BE MIGRATED TO VERSION 22
IN FEBRUARY, SO WE'LL BE ON THE
CURRENT VERSION.
BUT THERE IS SUCH A LEVEL OF
COMPLEXITY AND YOU'LL SEE THAT
IN THE NEXT DIAGRAMS.
IT IS FRAGILE.
ANY LITTLE THING CAN CAUSE
ISSUES.
ANY LITTLE SECURITY REQUIREMENT
REQUIRES US TO MAKE SURE THAT WE
SOLVE DIFFERENT ISSUES AT THE
SAME TIME.
THERE'S UNINTENDED CONSEQUENCES
TO MANY DIFFERENT THINGS.
USER ACCEPTANCE AND USER
SATISFACTION, NOBODY LIKES THEY
ARE EHR BUT I DON'T WANT PEOPLE
TO HATE THE ORGANIZATION OR
AFFECT THEIR MORALE AND
SOMETIMES WHAT IS IN CRIS HAS
AFFECTED PEOPLE'S MORALE.
NOW, SOME PIECES OF SATISFACTION
ARE DIFFICULT BECAUSE WE MADE
ORGANIZATIONAL DECISIONS, AND
THEY AFFECT THE SATISFACTION.
WE DON'T DO ENCOUNTERS, 20 YEARS
AGO WE DIDN'T EVEN KNOW WHEN
PATIENTS WERE GOING TO BE HERE
AND DIDN'T KNOW UNTIL THEY LEFT.
WE DIDN'T HAVE IT
ELECTRONICALLY.
NOW IT WAS PAPER, SO WE KNEW TO
PREPARE FOR THEM FROM THAT
STANDPOINT, BUT IT WASN'T
ELECTRONIC SO WE COULDN'T
NECESSARILY BE ENCOUNTER BASED.
WE'RE HIPAA EXEMPT, AND SO BASED
ON THAT WE CAN'T DO CERTAIN
THINGS LIKE e-PRESCRIBE, WE
HAVE TO MAKE SURE WE DON'T TURN
THE HIPAA SWITCH.
NINE YEARS AGO, FOR ABOUT A
BRIEF PERIOD OF TIME, WE WERE
GOING TO DO THIRD PARTY BILLING.
AND WE HAD TO GO THROUGH THE
HIPAA PROCESS BUT THEN DR.
COLLINS WENT TO CONGRESS AND
TURNED THAT OFF, ABOUT TWO WEEKS
BEFORE WE WERE SUPPOSED TO GO
LIVE FOR BILLING OF THIRD PARTY
FOR RADIOLOGY.
AND SO WE ARE NOT HIPAA, SO WE
HAVE TO WATCH HOW WE DO
INTEROPERABILITY TYPE THINGS TO
MAKE SURE WE STAY THAT WAY.
WE DON'T WANT ANY UNINTENDED
CONSEQUENCES THERE.
NEXT SLIDE.
SO THIS IS THE PROPOSED SYSTEM
IN 2003.
DR. ROSENFELD WAS CIO AT THE
TIME.
ELAINE WAS HIS BIGGEST SUPPORT
ON MANY DIFFERENT LEVELS TO MAKE
SURE CRIS HAPPENED.
DR. GILMAN ASKS IF FLOWER
DIAGRAM IS STANDARD.
IT'S STANDARD IN MY MIND, IT'S
THE ONLY THING I KNOW.
I REFER TO THE FLOWER DIAGRAM.
IT'S SUPPOSED TO LOOK LIKE
PETALS AROUND THE EHR, AND THEN
A STEM FEEDING INTO A
REPOSITORY.
WE USED TO CALL IT AN AIRPORT
DIAGRAM AS WELL BUT I THINK IT
REALLY LOOKS LIKE A FLOWER.
THIS QUOTE IS FROM THE NIH
RECORD, TALKS ABOUT 26 YEARS
OLD, DIDN'T EVOLVE CORRECTLY.
WE'VE DONE OUR BEST WITH CRIS TO
EVOLVE AND MEET THE NEEDS BUT IT
HAS BEEN 19 YEARS WITH THE SAME
SYSTEM, AND SAME VENDOR
PHILOSOPHY, AND SO IT'S TIME TO
REVIEW WHAT'S OUT THERE, THAT
WAS PART OF THE BUSINESS CASE
WAS TO REVIEW WHAT'S OUT THERE
AND THAT RECOMMENDATION FROM THE
BUSINESS CASE WAS TO WORK ON THE
PROCUREMENT COMPONENT, SO THAT'S
WHERE WEIR HERE.
I TAKE THE FLOWER DIAGRAM AND
CREATE WHAT WAS - WHAT LOOKED
LIKE 2004.
WHEN WE DO AN ITERATION WE
UPDATE THIS DIAGRAM.
THIS WAS BASED ON ECLIPYSYS,
3.3, STEPHANIE MIGHT KNOW THE
NUMBER, IT DID HAVE EIMAR AND
VITALS, IMPLEMENTED NURSING
DOCUMENTATION, PHYSICIAN
DOCUMENTATION.
AT THE TIME WE WERE THE ONLY
ONES THAT CAN CHEMOTHERAPY
INSIDE THE EHR, ANOTHER HOSPITAL
EVERY TIME I WENT TO A MEETING
WAS UPSET THAT THEY WOULD SAY
NIH WAS FIRST, SO OF COURSE WEEP
HAVE TO BE FIRST FOR
CHEMOTHERAPY.
I MEAN, THAT MAKES SENSE.
BUT IT WAS ANOTHER CANCER
INSTITUTE THAT THEY WANTED TO BE
KNOWN AS NUMBER ONE.
SO, IN THE BLUE EVERYTHING IN
THE BLUE IS CRIS BOUNDARY,
CLOVER LEAF IS INTERFACE,
ANYTHING BELOW OR INSIDE THAT
CIRCLE IS THE VENDOR PRODUCT AND
WHAT'S IN THE VENDOR PRODUCT.
YELLOW ARE THE CLINICAL
INFORMATION SYSTEMS.
THEY ARE SEPARATE SO IT WAS AT
BEST A BRAID APPROACH.
AT THE TIME WE ONLY HAD ONE I.C.
THAT WE INTERFACED, THEY OWN THE
SOFT PATH MODULE OF SOFT
COMPUTER CORE.
IT'S IN OUR DATA CENTER.
WE SUPPORT IT BUT THEY OWN THAT
MODULE, SO THAT WAS THE ONLY
INSTITUTE INTERFACE, IF YOU
WILL.
ON THE RIGHT IS THE MEDICAL
RECORD ROOM, FLOOR TO CEILING,
FIRE MARSHAL HATED TO GO THROUGH
BECAUSE THEY WERE UP TO THE
SPRINKLERS.
AND SO WE DON'T HAVE THAT ROOM
ANYMORE SO WE DON'T HAVE TO
WORRY.
AT THE TIME WE DIDN'T HAVE
BTRIS, IT WAS A CLINICAL DATA
WAREHOUSE WE CREATED AS PART OF
THE MEDICAL INFORMATION SYSTEM
THAT WAS PART OF TECHNICON,
ORIGINAL EHR AT NIH.
AND CDW FED OTHER INSTITUTE
SYSTEMS.
NEXT SLIDE.
SO THIS IS ABOUT TEN YEARS
AFTER.
EXCUSE ME.
ALLSCRIPTS WAS THE VENDOR AT THE
TIME.
WE HAD A FEW MORE COMPONENTS.
WE HAD THE EEMR, PATIENT PORTAL,
WE HAD SCHEDULING THAT WAS PART
OF THE PRODUCT, PART OF SEM.
WHEN WE WENT LIVE WITH CRIS WE
HAD A SEPARATE INTEGRATED
SCHEDULING SYSTEM.
WE DID HAVE BTRIS AT THAT POINT
SO EVERYTHING FROM CRIS AS WELL
AS THE CLINICAL INFORMATION
SYSTEMS FEED INTO BTRIS AND THEN
BTRIS FEEDS INSTITUTE SYSTEMS.
WE'VE HAD MORE SYSTEMS FROM THE
INSTITUTES, AND THEN WE HAD A
FEW MORE CLINICAL INFORMATION
SYSTEMS.
WE HAD A PORTAL FROM SUNRISE BUT
IT WAS SEPARATE IN A WAY.
AND WE HAVE OUR ADMISSION
SYSTEM, PRE-ADMISSION SYSTEM,
YOU MIGHT HAVE HEARD OF ATB.
THIS IS WHAT IT LOOKED LIKE IN
2014.
NEXT.
AND SO WHERE ARE WE NOW?
I UPDATED IT ON THE SECOND
BECAUSE WE ADDED FROM INTERFACE,
ORDERS AND RESULTS BACK TO CRIS.
WE DO HAVE A THIRD PARTY
COMPONENT THAT IS SANCTIONED BY
ALTERRA, WORKING DIAGNOSIS, THAT
HELPS WITH OUR HUDDLE AND CARE
PLAN AND DIFFERENT I-PASS TYPE
TRANSITIONS FOR CARE FOR NURSING
AND PHYSICIANS.
AGAIN, MORE YELLOWS, MORE
INFORMATION SYSTEMS, CLINICAL
INFORMATION SYSTEMS, ELECTRONIC
CONSENTS, IMET CONSENT IS A BIG
DEAL.
DOCUMENTATION FROM EXTERNAL
ORGANIZATIONS THEY CAN LOAD TO
CRIS.
WE DON'T HAVE A CDA CONTINUITY
CARE DOCUMENT.
WE DON'T HAVE THAT
INTEROPERABILITY.
SOMETHING WE NEED.
DURING COVID ALTERRA WAS A
BLESSING, ABLE TO STAND UP A
TESTING ENVIRONMENT FOR NIH
EMPLOYEES, DR. GILMAN GAVE ME
FOUR WEEKS, WE DID IT IN THREE,
WOULDN'T HAVE BEEN ABLE TO DO IT
WITH ANOTHER EHR.
SAME REQUIREMENT FOR VACCINES
FOR EMPLOYEES.
I MIGHT HAVE GAVE ME FIVE WEEKS,
WE DID IT IN FOUR.
SO WE WERE ABLE TO MEET IT
BECAUSE WE'RE ALLOWED TO DO SO
MUCH CUSTOMIZATION AND BUILD
THINGS THROUGH INTERFACE AND
PLUS I HAVE A REALLY GOOD TEAM
THAT CAN DESIGN AND BUILD AND
THINK THROUGH.
IF YOU CAN BRING UP A PROBLEM,
THEY CAN FIGURE OUT A SOLUTION.
BUT IT'S HARD TO SUSTAIN THAT.
AND THAT'S PART OF WHY WE'RE
WHERE WE ARE RIGHT NOW.
ONE THING FOR OTHER
ORGANIZATIONS, STEPHANIE CAN
CORRECT ME IF I'M WRONG, BUT
JOHNS HOPKINS AS WELL AS MAYO
CLINIC, AS WELL AS VANDERBILT,
THEY HAD A LOT OF SEPARATE
SYSTEMS.
SO WHEN THEY MOVED TO A NEW EHR,
THEY WERE ABLE TO GET RID OF
MANY OF THOSE SYSTEMS.
I HAD EVERYTHING BUILT AS PART
OF CRIS.
SO WHEN WE GO LIVE WITH A NEW
EHR WE HAVE TO MAKE SURE ALL
THOSE THINGS WE BUILT AS PART OF
CRIS ARE BUILT LIVE.
OUR GO LIVE WILL BE MORE
COMPLICATED THAN OTHERS BECAUSE
THEY WERE ABLE TO EVOLVE OVER
TIME INTO WHERE THEY ARE AT BUT
I'M AT THE END GAME.
I HAD EVERYTHING BUILT IN CRIS
ON PURPOSE BECAUSE I DIDN'T WANT
EXTRA SYSTEMS FOR SUPPORT.
BUT THE YELLOWS ARE EXTRA
SYSTEMS, AND THAT LEADS TO THE
COMPLEXITY AND FRAGILITY.
NEXT SLIDE.
>> JOHN, IS FOLLOW MY HEALTH A
PATIENT PORTAL?
>> YES.
THEIR PERSONAL HEALTH RECORD.
DAVID CAN TELL YOU EVERYTHING
THAT'S RIGHT OR WRONG WITH THAT.
WE USE DAVID A LOT TO HELP US
WITH OUR VENDOR TO IDENTIFY WHAT
SYSTEMS SHOULD LOOK LIKE.
>> LIKE THE OTHER
(INDISCERNIBLE).
>> YEAH, IT'S A BOLT-ON.
>> (INAUDIBLE).
>> NOW FOLLOW MY HEALTH IS WITH
VARIDIGM AND ALLSCRIPTS, THEY
DIDN'T SELL TO ALTERRA.
THE STORY, ONE OF THE ARCHITECTS
AT ECLYPSYS LEFT TO TAKE CARE OF
FEMME, REALIZE THE PORTALS
WEREN'T FOCUSED ON, BUILT IT,
SOLD IT BACK TO ALLSCRIPTS.
SO IT IS A BOLT ON.
SO, THE COMPLEX -- ANY OTHER
QUESTIONS?
SORRY.
ALTERRA IS THE CURRENT VENDOR.
THERE ARE PORTIONS LIKE FOLLOW
MY HEALTH, PATIENT REGISTRATION
THAT WE'RE HOPING TO GO LIVE IN
MARCH, MOBILE PATIENT
EXPERIENCE.
THAT IS STILL PART OF VERIDIGM
AND ALLSCRIPTS.
PATIENTS, YOU KNOW, DATA IS
BETTER THAN GOING THROUGH
SOMEBODY ELSE FOR REGISTRATION
PROCESS.
WE HAVE MANY CLINICAL
INFORMATION SYSTEMS, AT LEAST
15, THAT'S NOT COUNTING THE I.C.
SYSTEMS.
THERE'S OVER 280+ INTERFACES
WHEN THIS SLIDE WAS IDENTIFIED.
I WAS TOLD LAST WEEK THERE'S
320.
THERE MIGHT BE FIVE INTERFACES
FOR ONE SYSTEM.
DEMOGRAPHICS WOULD BE ITS OWN.
PATIENT REGISTRATION INFORMATION
WOULD BE ITS OWN INTERFACE.
YOU HAVE ORDERS AND RESULTS.
THEY WOULD BE SEPARATE,
DOCUMENTS MIGHT BE SEPARATE, A
SYSTEM MIGHT HAVE THREE TO FIVE
INTERFACES.
THREE DATA CENTERS, PART OF THE
ASSESSMENT AND PART OF OUR OIG
AUDIT, IS THAT RIGHT, DAVID?
OIG AUDIT SAID WE NEEDED A DATA
CENTER SO MANY MILES AWAY.
AND THEY CITED US ON IT.
AND BUT WE WERE MOVING TO
CULPEPER, AND IT'S OVER THE
MILEAGE THAT HIMSS, BUT THE
STATEMENT SIT NEEDS TO BE A
STAFFED DATA CENTER BECAUSE IF
SOMETHING HAPPENED HERE, IN
ORDER TO TURN THAT ONE ON,
PEOPLE WOULD HAVE TO DRIVE
THERE.
AND THEIR BIGGER CONCERN WAS
PEOPLE HERE IF THERE WAS A
DISASTER IN BETHESDA, WOULD BE
FOCUSED ON THEIR OTHER FAMILY
AND WOULDN'T BE ABLE TO ACCOUNT
FOR THE DATA CENTER.
WE DID A RISK ANALYSIS, SIS
DIDN'T HAVE CONCERNS WITH
LOCATIONS PLUS WE CAN TURN IT ON
FROM ANYWHERE.
WE HAVE HUNDREDS OF
VIRTUALIZATION SERVERS, HUNDREDS
OF-- 80+ CITRIX SERVERS, CAN RUN
FROM BUILDING 10, 12, OR
CULPEPER.
NOT ALL SYSTEMS BUT CRIS WE
DEFINITELY CAN.
COMPLEXITY, SO SECURITY
REQUIREMENTS FROM FEDERAL
GOVERNMENT, YOU HAVE TO CHANGE
YOUR PASSWORD ON A FREQUENT
BASIS.
WE CAN'T CHANGE WITHOUT TURNING
DATABASES DOWN.
FIVE NODES.
SAFEST WAY IS TURN THINGS DOWN.
THAT TAKES FOUR HOURS EVERY --
TWICE A YEAR.
MICROSOFT UPDATES ARE EVERY
MONTH.
WE DON'T CALL IT DOWN BUT THERE
IS AN INTERRUPTION FOR PRINTING
AND INTERFACES SO WE COUNT THAT
AS A DOWN.
IF YOU ADD UP ALL THE THINGS YOU
HAVE TO DO, FROM THE VENDOR AND
FROM SECURITY, IT ADDS UP TO
OVER 2,000 MINUTES.
AND SO OUR UP TIME JUST BASED ON
THAT IS 99.58.
WE DO KEEP TRACK OF ALL OUR
DOWNS.
WE'RE ON THE NIH NETWORK, WE'VE
ALSO GOT OUR OWN NETWORK
COMPONENTS, ALL THE INTERFACES.
USUALLY UP TIME IS IDENTIFIED OR
SYSTEM AVAILABILITY BASED ON
UNSCHEDULED DOWNS.
BUT TO A USER AND TO THE
PATIENTS, IF IT'S DOWN, IT'S
DOWN.
SO I DON'T CARE ABOUT WHAT THE
WORLD SAYS ABOUT SYSTEM
AVAILABILITY.
I KEEP TRACK OF SCHEDULED AND
UNSCHEDULED.
AND AS OF SEPTEMBER 30, IT WAS
98.52.
THAT IS NOT A GOOD NUMBER.
I'M PROUD OF EVERY SINGLE PERSON
THAT WORKS IN THE CLINICAL
CENTER AND WORKS TO MAINTAIN
CRIS, AND THEY DO A TERRIFIC
JOB.
I CAN'T BE PROUDER OF ANYTHING.
BUT THIS IS NOT A NUMBER TO BE
PROUD OF.
NEXT SLIDE.
TOP SIX ISSUES, LACK OF SEAMLESS
INTEGRATION, LACK OF ENCOUNTER
BASED PATIENT MODULES, NOT
INTUITIVE.
DOCUMENTATION AND FLOW SHEETS
NOT BUILT USING STANDARD
TERMINOLOGY.
TWENTY YEARS AGO THERE WASN'T.
TO REDO THAT WILL TAKE A LARGE
TASK.
WORKFLOW IS NOT BUILT
NECESSARILY INTO CRIS.
WE CAN'T BUILD EVERY WORKFLOW TO
MATCH EVERY BRANCH AT NIH.
AND WE NEED IMPROVED AUTOMATION
FOR MANAGING PHYSICIAN AND
NURSING TASKS AND WORKFLOW
CAPABILITIES.
THEY SAY THEY HAVE IT, THE ISSUE
IS THEY HAVE IT ABOUT 75% DONE,
I CAN'T GO LIVE WITH SOME OF THE
THINGS THAT ARE IN THE CURRENT
SYSTEM AT 85%.
THEY HEAR THAT LINE FROM ME
EVERY DAY, SAYING IT HERE IS NOT
SOMETHING NEW.
AND THEN INABILITY TO SUSTAIN
CUSTOM DEVELOPMENT BASED ON
LIMITATIONS OF CURRENT SYSTEM,
AND BASED ON STAFFING.
30 OUT OF MY 100 STAFF ARE
RETIREMENT ELIGIBLE SO THEY HAVE
A LOT OF THIS KNOWLEDGE THAT
WE'RE TRYING TO ENSURE WE HAVE
DOCUMENTED AND KNOWLEDGE
TRANSFER BUT THAT IS A LOT OF
PEOPLE TO ACCOUNT FOR.
NEXT.
THE ANNUAL CRIS SURVEY MANY
PEOPLE SAY NOBODY LIKES THEIR
EHR.
I DON'T KNOW IF THAT'S REALLY
TRUE.
WHEN PEOPLE COME IN THEY TELL US
WE NEED THIS MODULE.
THEY CAN DO IT IN X.
AND WHEN I'M LIKE, YEAH, BUT
THIS IS WHAT I HAVE,, SOME
THINGS THEY ASK FOR ARE IN THE
SYSTEM AND THEY DON'T REALIZE
IT, IT'S NOT IN FRONT OF THEM,
PLUS WE DON'T DO RETRAINING ON A
REGULAR BASIS, SOMETHING WE'RE
WORKING ON.
THE BIGGEST POINT IT HASN'T
INCREASED IN SATISFACTION, AS
PART OF BEING AN ENTERPRISE
SYSTEM AND HIGH VALUED ASSET WE
HAVE TO DO A SURVEY EVERY YEAR,
AND THE NUMBERS DON'T INCREASE
FOR SATISFACTION.
NEXT.
I THINK PAT FIXED THAT SLIDE
BECAUSE SATISFACTION IS GOOD SO
THANK YOU VERY MUCH FOR DOING
THAT.
PROPOSED EHR WE WANT SOMETHING
INTEGRATED, MONOLITHTIC, TO BE
PART OF THE EHR SOLUTION, WE
DON'T WANT TO BOLT ON OR HAVE
SEPARATE SYSTEMS, IF THEY ARE
AVAILABLE AS PART OF THE
INTEGRATED SYSTEM.
AM -- I LEFT INSTITUTE SYSTEMS
AS THEY ARE.
I'M ASSUMING SOME OF THOSE WOULD
BE ABLE TO BE IN AN
INTEGRATED -- I KNOW SOME WOULD
BE IN AN INTEGRATED SOLUTION.
BUT I WANT TO MAKE SURE WE TAKE
CARE OF CRIS FIRST AND THOSE
MODULES HAVE THOSE DISCUSSIONS
WITH THE INSTITUTES.
LESS SYSTEMS, BTRIS IS STILL
LISTED, THERE'S A CRIS B PROJECT
GOING ON, DR. SCHOR, UNDER HER
LEADERSHIP BUT I NEEDED TO LEAVE
SOMETHING BECAUSE I DON'T KNOW
WHAT IT WILL BE WHEN WE GET TO
THAT STAIN IN THE GAME.
DR. SCHOR AND I TALKED FOR TWO
MINUTES AND MOST OF THE VENDORS
DO HAVE A RESEARCH SOLUTION BUT
IT'S NOT A RESEARCH SOLUTION I
DON'T THINK THAT CAN WORK HERE.
SO, WE'RE DEFINITELY
CUSTOMIZABLE.
NEXT SLIDE.
AND SO THE EHR MODERNIZATION
PROJECT, THIS IS A COMPLEX
ORGANIZATIONAL PROJECT, WITH
I.T. COMPONENTS.
I KNOW I'M THE I.T. GUY.
I HEAR THAT A LOT.
I'M OKAY WITH IT.
I LOVE TO BE KNOWN AS THE I.T.
GUY.
THIS CAN'T BE AN I.T. PROJECT,
RIGHT?
IT WILL FAIL.
MISERABLY.
I KNOW MORE ABOUT CLINICAL
WORKFLOW THAN THE AVERAGE I.T.
GUY, BUT I'M NOT A CLINICIAN,
RIGHT?
SO, THIS IS AN ORGANIZATIONAL
PROJECT.
THIS WILL REQUIRE EVERYBODY'S
PARTICIPATION.
EVERYBODY HERE, PATIENTS,
EVERYBODY IN THE CLINICAL
CENTER, EVERYBODY IN THE
INSTITUTES, AND WE'RE GOING TO
WORK IN THE NEW YEAR TO GET THAT
INTEGRATED GROUP OF MORE PEOPLE
THAN THE I.T. GUY.
THIS WILL MIGRATE EXTERNAL
CLINICAL INFORMATION SYSTEMS
INTO AN INTEGRATED EHR, SO ALL
THE DEPARTMENTS HAVE A VERY
VESTED INTEREST TO BE PART OF
THIS PROJECT, BECAUSE WE'RE
GOING TO REPLACE SOME OF THOSE
SYSTEMS.
AS MANY AS POSSIBLE.
STREAMLINE, ENSURE THE PATIENT
STORY IS TOLD AND EASY TO SEE.
ONE PHYSICIAN SAYS THIS IS HOW I
DETERMINE THE PATIENT'S STORY.
I GO TO THE BED AND HIT HIS FOOT
AND SAY, OKAY, HOW DO YOU FEEL
TODAY?
I DON'T WANT THAT.
IT NEEDS TO BE PART OF THE
SYSTEM TO TELL THAT STORY, SO
BEFORE THEY GET TO THE PATIENT'S
ROOM THEY KNOW EVERYTHING THEY
NEED TO KNOW.
IMPROVE PATIENT SAFETY AND
CLINICAL CARE DELIVERY QUALITY.
IMPROVE PATIENT EXPERIENCE AND
ENGAGEMENT.
IMPROVE DECISION MAKING ACROSS
CLINICAL CARE ROLES.
REDUCE COMPLEXITY TO SUPPORT
SYSTEM.
EVERY ONE OF THOSE YELLOW
SYSTEMS WE HAVE TO PATCH ON A
MONTHLY BASIS AND MEET SECURITY
REQUIREMENTS.
IF THERE IS A CRITICAL
VULNERABILITY, NIH WILL SAY THAT
YOU HAVE TWO WEEKS TO SOLVE A
CERTAIN ITEM.
I NEED SIX WEEKS, WHENEVER
THERE'S A CRITICAL
VULNERABILITY, BECAUSE THERE'S A
LEVEL OF TESTING THAT WE DO ON
CRIS, AND ALL THE CLINICAL
SYSTEMS.
BECAUSE I NEED TO MAKE SURE WE
DON'T HAVE ANY INTEGRITY ISSUES
AT ALL.
IMPROVE SYSTEM AVAILABILITY.
NEXT SLIDE.
SO, IF WE CAN'T FIND FUNDS, IF
WE KICK THE BALL CONTINUOUSLY,
THERE'S THINGS THAT HAVE TO BE
UPGRADED.
SO WE WENT THROUGH MAJOR
SYSTEMS, THESE ADDRESS OUTCOMES
AS WELL AS ISSUES IDENTIFIED BY
THE BUSINESS CASE.
PUT SOME NUMBERS TO IT SO WE CAN
ENSURE OUR BUSINESS CASE WAS
FULL AND COMPLETE.
SO, I'M NOT GOING THROUGH THEM
FROM A MONEY AND YEARS AND STAFF
BUT ENCOUNTER BASED USABILITY,
DOCUMENTATION, e-PRESCRIBE,
HAVE TO MAKE SURE DIFFERENT
COMPONENTS OF THAT,
INTEROPERABILITY GETTING DATA
FROM THE OUTSIDE INTERFACING TO
DIFFERENT HIEs, PRECISION
MEDICINE AS WELL AS CLINICAL
DECISION SUPPORT.
SO, THESE ARE IMPROVEMENTS TO
MAINTAIN A SYSTEM.
NEXT.
SO, WE DID THE BUSINESS CASE.
THAT WAS WITH DELOITTE, AS PART
OF THAT WE WENT TO MITRE, THIS
IS ONE OF THE THINGS THEY
PROVIDE.
THEY HELPED MILITARY HELP,
HELPED DoD, OR SAME THING.
THEY HELPED THE V.A.
THEY ARE HELPING IHS, IN THE
PROCESS DOING DIFFERENT
COMPONENTS FROM THE PERFORMANCE
WORK STATEMENT AS WELL AS
CLINICAL WORKFLOWS.
SO, WE'RE INCLUDING THEM.
WHEN WE GET TO THE PROCUREMENT
STAGE IT WILL BE OPEN BID TO ALL
VENDORS.
THEY WILL HAVE REQUIREMENTS,
THAT'S WHAT THE PERFORMANCE WORK
STATEMENT IS.
AND WE WANT AN EHR WILL THAT
SUPPORT SAFE QUALITY CLINICAL
CARE, ALIGNS WITH CURRENT AND
FUTURE GOOD CLINICAL PRACTICE
STANDARDS, REVIEW COMPONENTS
THAT ARE NEEDED THAT ARE IN THE
SOW, PWS, REVIEW COMPONENTS AND
HOW THEY ARE GOING TO BE
IMPLEMENTED, REVIEWS HOW SYSTEM
WILL PROVISION DATA TO BE USEFUL
FOR CLINICAL RESEARCH.
NEXT.
WE HAD MITRE.
WE HAD ADDITIONAL CONTRACT.
WE WERE ABOUT 75% DONE WITH THE
PWS AND SOW, AND THEN CONTRACT
ENDED AND TOOK US A LONG TIME
BECAUSE THE PROCESS WITH CMS TO
UTILIZE MITRE CHANGED, WAS UNDER
A DIFFERENT LEVEL OF SCRUTINY
AND TOOK US SIX MONTHS TO GET IT
RESTARTED.
IT'S NOW RESTARTED.
THEY ARE FINALIZING THE PWS AND
SOW, AND THEY ARE GOING TO START
THE CLINICAL WORKFLOW MODELING
COMPONENT IN FEBRUARY.
WE'VE HAD FOCUS GROUPS.
MANY WERE PART OF THE BUSINESS
CASE AS WELL AS PART OF THE PWS
CREATION.
AND SO MITRE HAD I THINK OVER
30+ FOCUS GROUPS.
WE'VE HAD JOB SHADOWING, JOB
SHADOWING WITH NURSING WAS VERY
CRITICAL, PHYSICIANS AS WELL.
SO THESE ARE ALL THE DIFFERENT
FOCUS GROUPS THAT OCCURRED.
THOSE THAT WERE INTERVIEWED AS
PART OF THE PROCESS AS WELL.
NEXT.
WE HAVE OVER A THOUSAND
INDIVIDUAL REQUIREMENTS.
PWS IS BROKEN OUT FOR DIFFERENT
FUNCTION AREAS, IDENTIFYING THE
TOP FIVE, AND THEN WE HAVE
APPENDIX OR SPREADSHEET WITH
INDIVIDUAL REQUIREMENTS,
VALIDATING THEM NOW.
NEXT.
AND THEN THE CLINICAL WORKFLOW
MODELING CREATED INVENTORY OF
ALL THE CLINICAL WORKFLOWS, THEY
HAVE DONE THIS WITH IHS AND
OTHER PEOPLE, AND THEY THEY HAVE
A FRAMEWORK TO DO THAT.
OUR CONTRACT WAS TO DO 50
CLINICAL WORKFLOWS FROM ORDERING
TO RESULTS.
AND THEN AFTER THE 50 WE NEED TO
DETERMINE WHAT'S LEFT AND THEN
HOW THE INTERDISCIPLINARY TEAM
CAN DO THOSE.
AND THEN THE BIGGEST IS SECURE
FUNDING.
SO WE -- THERE IS THIS MECHANISM
CALLED NON-EXPIRING FUNDS, IT'S
FUNDS BASED ON PROJECTS THAT
DON'T CONTINUE, THE MONEY GOES
INTO A POT, AND IT'S TO SUPPORT
LARGE I.T. PROJECTS, AND
CONSTRUCTION PROJECTS.
AND WE DONE THE INITIAL REQUEST,
AND WE'RE STILL WORKING THROUGH
THAT PROCESS.
IT WON'T BE AVAILABLE FOR 2024
OR 2025, BUT WE'RE MAKING SURE
WE HAVE EVERYTHING READY IF ANY
FUNDS COME AVAILABLE.
IF ANYBODY WANTS TO DONATE $150
MILLION, I'M PRETTY SURE WE CAN
FIGURE OUT HOW TO DO THAT.
AND WE FOUND OUT WHEN WE
SUBMITTED THE NEF REQUEST THE
FIRST THING FROM HHS CIO WHAT'S
YOUR FEDERAL ITF REFORM ACT
NUMBER, I DIDN'T HAVE ONE, IT
WAS ON MY LIST OF THINGS TO DO
BUT THE OPPORTUNITY FOR THE NEF
FUNDING CAME BEFORE WE DID THAT,
AND SO WE'VE COMPLETED THE FTARA
AND HAVE A NUMBER, HHS IS
REVIEWING IT, WE HAVE IT
APPROVED BY NIH.
NEXT SLIDE.
NEXT STEPS, MITRE CONTINUE TO
WORK, SECURE FUNDING, HAVE OUR
PWS/SOW SIGNED, SEALED, SHOVEL
READY.
WE'RE TRYING TO MAKE SURE
EVERYTHING IS DONE SO WHEN THE
TIME HAPPENS, WE'RE READY.
NEXT SLIDE.
I THINK THAT'S IT.
DID I DO ALL RIGHT, DR. GILMAN?
OKAY.
HE LOOKED FRUSTRATED SO I WANTED
TO MAKE SURE.
>> DON'T TRY TO READ JIM'S FACE.
>> YEAH, I KNOW, I KNOW.
>> ARE THERE ANY QUESTIONS?
DAVID?
>> OBSERVATION, THE COMPLEXITY
DEFINING REQUIREMENTS AND
INTERRELATIONS AMONG
REQUIREMENTS, IT'S LIKE BUILDING
A SATELLITE SYSTEM WITH
COMMUNICATIONS PAYLOAD, WHICH
REQUIRES A FAIRLY COMPREHENSIVE
AND ROBUST REQUIREMENTS TRACKING
SYSTEM, WHICH THEN BECOMES PART
OF YOUR TESTING PACKAGE FOR
REGRESSION TESTING AND THEN IS
USED FOR MAINTENANCE OF THE LINE
AFTER THE FACT.
DO WE HAVE ANY CONTROL OVER HOW
MITRE IS DOING THAT?
>> NO.
WE HAD THAT CONVERSATION BASED
ON YOUR COMMENT, OR I THINK YOU
AND I DISCUSSED THAT.
AND I AM FAILING TO REMEMBER
WHAT THE SOLUTION IS.
>> THEY DO HAVE IT IN THEIR
SYSTEM BUT I NEED IT SO I CAN
MANAGE IT AFTER, RIGHT.
>> YEAH.
>> SO I NEED TO DETERMINE THAT.
DAVID ON ZOOM.
JON, TERRIFIC PRESENTATION.
YOU'VE MADE A CONVINCING CASE
HOW COMPLICATED THIS SYSTEM IS.
AND NEEDS TO BE REPLACED.
AND I HAVE TWO QUESTIONS.
ONE IS A QUESTION.
YOU MENTIONED EARLY ON, AND THIS
MAY BE A POINT OF IGNORANCE ON
MY PART, THAT THE SYSTEM IS
HIPAA EXEMPT.
AND WHAT DOES THAT MEAN FROM A
PROVIDER, PATIENT, AND
INSTITUTIONAL PERSPECTIVE?
THE SECOND QUESTION STEMS FROM
COMPLEXITY OF SYSTEM THAT YOU SO
HAPPILY OR COGENTLY DESCRIBED,
$150 MILLION SEEMS CHEAP FOR A
SYSTEM AS COMPLEX AS THIS.
YOU'RE AWARE OF ACADEMIC MEDICAL
CENTERS THAT SPENT MORE ON I.T.
STRUCTURE THAN THAT.
>> I'LL ANSWER THE SECOND FIRST
BECAUSE I MIGHT NEED HELP WITH
THE FIRST ONE.
THE SECOND FIRST, THAT WAS
OWNERSHIP VALUE THAT WAS
IDENTIFIED BY MITRE BUT I THINK
WE STILL NEED TO DO SOME
VALIDATION ON THAT NUMBER.
BUT THE IDEA WAS $30 MILLION A
YEAR, AND THAT $30 MILLION WOULD
CONTINUE.
SO, THE FIRST FIVE YEARS IS THE
$150 MILLION.
BUT WE DO NEED TO VALIDATE THAT
NUMBER.
I DON'T TRUST ANYTHING FROM
ANYBODY.
IT'S THAT VERIFY AND TRUST RULE.
PART OF GETTING MORE
REQUIREMENTS AND GETTING THIS
OUT TO INDUSTRY TO TELL US THE
COST, WE'RE GOING TO DO, BUT
THAT NUMBER WAS BASED ON MITRE
DOING RESEARCH WITH OTHER LIKE
HOSPITALS, RIGHT?
WE'RE A SINGLE INSTANCE, AND SO
THAT'S PART OF THE VALUE.
BUT WE DO HAVE TO VALIDATE THAT
NUMBER.
I AGREE WITH WHAT YOU SAID.
FOR THE HIPAA EXEMPT WE DON'T
BILL, RIGHT?
SO WE DON'T HAVE THAT BUSINESS
ASSOCIATE COMPONENT.
WE DON'T HAVE THAT SENDING OF
DATA TO PAYERS OR TO ANYBODY.
AND WE DON'T SEND ANYTHING OUT
FROM CRIS.
IF THINGS GO OUT FOR DIFFERENT
PURPOSES, THEY ARE EXTERNAL TO
CRIS.
BUT WE DON'T BILL SO THE BIGGEST
ISSUE FROM A HIPAA STANDPOINT IS
BILLING.
IF WE BILLED ANY COMPONENT, OR
WE START INTERFACING OUR DATA TO
EXTERNAL SOURCES DIRECTLY FROM
OUR EHR FOR SOMETHING LIKE
e-PRESCRIBE WE MIGHT CHANGE THE
HIPAA EXEMPT CONDITION.
SO I NEED TO BE CAREFUL OF THAT.
BUT THAT'S PART OF -- THAT'S THE
WAY SINCE I'VE BEEN HERE SO I'M
NOT SURE WHAT INITIATED THE
HIPAA EXEMPT.
BUT IT'S MAINLY BECAUSE WE DON'T
BILL.
>> BUT WE ARE BOUND BY THE
PRIVACY ACT.
>> YES.
>> WITH REGARD TO PROTECTION OF
INFORMATION, WE'RE IN VIRTUALLY
EVERY WAY HIPAA OBSERVANTS OWN
THOUGH WE'RE NOT FULLY HIPAA
COMPLIANT.
>> WELL, AREN'T WE HIPAA EXEMPT
AS A RESEARCH HOSPITAL?
>> THAT'S WHY IT'S MAINTAINED,
YES.
>> GREAT.
>> BUT IF WE WERE A RESEARCH
HOSPITAL AND BILLED WE WOULDN'T
BE EXEMPT ANYMORE, RIGHT?
>> SO I APPLAUD YOU FOR A COUPLE
THINGS.
ONE, THAT YOU'VE REMAINED SO
CALM JUST BY THE VERY CLEAR
COMPLEXITY OF THE PROJECT.
>> DR. GILMAN COMES TO MY OFFICE
ONCE A MONTH TO MAKE SURE I
HAVEN'T FIGURED OUT A WAY TO
OPEN WINDOWS.
>> I APPLAUD YOU FOR RECOGNIZING
THIS IS NOT AN I.T. ENDEAVOR AND
IT'S A CLINICAL ENDEAVOR AND
THERE NEEDS TO BE A WIDE ARRAY
OF PEOPLE THAT TOUCH WHAT YOU'RE
DOING.
I HAVE A TWO-PART QUESTION.
ONE IS GIVEN THE DEGREE OF
COMPLEXITY, ARE YOU CONFIDENT
THAT THERE IS AN EHR SYSTEM THAT
CAN ACTUALLY DO ALL OF THIS?
THAT'S THE FIRST QUESTION.
THE SECOND QUESTION IS, IT STEMS
FROM YOUR COMMENT ABOUT THANK
GOODsNESS FOR ALTERRA DURING
COVID, CUSTOMIZABLE TO DO WHAT
YOU NEEDED.
IN MANY RESPECTS ARE YOU LOOKING
FOR A CANDIDATE THAT DOESN'T
JUST HAVE CAPABILITIES YOU NEED
TODAY BUT WILL HAVE THE
CAPABILITIES YOU NEED FOR THE
NEXT TWO OR THREE DECADES AS YOU
CONTINUE TO CUSTOMIZE THE
SOLUTION?
>> I CAN ANSWER THE SECOND ONE
FIRST AND IF YOU CAN REASK THE
FIRST BECAUSE I ALREADY FORGOT.
SORRY ABOUT THAT.
SECOND QUESTION IS WE NEED TO
HAVE REQUIREMENTS IN THERE TO --
I HATE THE METHODOLOGY AGILE.
I USED TO HATE THE METHODOLOGY
AGILE BUT WE HAVE TO BE AGILE,
RIGHT?
I TEACH SOFTWARE ENGINEERING SO
I'VE STARTED TO LIKE THE TERM,
AGILE, AND WE HAVE TO HAVE
REQUIREMENTS FROM OUR PWS THAT
IDENTIFIES THAT ENVIRONMENT THAT
WE WERE ABLE TO OPERATE DURING
COVID.
AND SO I NEED TO HAVE THOSE
REQUIREMENTS IN THERE BUT THERE
HAS TO BE SOME FLEXIBILITY.
AND WHAT WE BUILT WAS A SEPARATE
SCHEDULING SYSTEM THAT COULD
INTERFACE TO CRIS AND CRIS COULD
FEED THE LAB SYSTEM AND
EVERYTHING WORKED.
WE NEED TO IDENTIFY THOSE
REQUIREMENTS, THAT AGILE
DEVELOPMENT AND THAT TYPE OF
ENVIRONMENT WE CREATED HAVE TO
BE PART OF THE REQUIREMENTS.
>> GOOD TO HEAR.
FIRST QUESTION WAS IS THERE AN
ORGANIZATION THAT CAN DO THIS?
I COULD IMAGINE LEADING
CONTENTERS WOULD BE EPIC OR
ORACLE OR MEDI TECH, BUT ARE YOU
COMFORTABLE THE LONG LIST OF
CAPABILITIES THAT THE LEADING
EHR COMPANIES AT THE PRICE THAT
YOU'VE DESIGNATED CAN DO --
>> WELL, THAT'S A KICKER.
YEAH, OTHER ORGANIZATIONS THAT
ARE ACADEMIC MEDICAL CENTERS AND
PRIDE THEMSELVES ON RESEARCH
LIKE JOHNS HOPKINS AND
VANDERBILT AND MAYO, HAVE SHOWN
USING COMMERCIAL EHR IS POSSIBLE
SO I DO BELIEVE IT'S POSSIBLE
BUT I'M NOT GOING TO IDENTIFY
VENDORS BECAUSE I CAN'T, RIGHT?
I DON'T LOOK GOOD IN ORANGE.
I DON'T -- ANY SHIRT WITH MORE
THAN TWO DIGITS, NO LINES UP AND
DOWN, I HAVE TO BE CAREFUL OF
PROCUREMENT SIDE OF THAT.
BUT I BELIEVE THERE'S COMMERCIAL
PRODUCT, AND IT'S UP TO US TO
MAKE SURE THE REQUIREMENTS ARE
RIGHT, AND SOLID, FOR OUR
CLINICAL RESEARCH ENVIRONMENT.
>> FINAL QUESTION, WILL ALTERRA
ALSO RECEIVE THE --
>> YES.
ANYBODY CAN BID.
IT'S OPEN.
>> I JUST WANTED TO ALSO THANK
YOU, JON, ON JUST ABOUT EVERY
ORGANIZATION I'VE BEEN PART OF,
MOST NOT HEALTH CARE, THE I.T.
IS THE MOST THANKLESS SO I
APPRECIATE THE COMPLEXITY.
THIS IS NOT MY AREA OF EXPERTISE
BUT I DID NOTICE I TOOK SPECIAL
NOTE OF THAT PERFORMANCE SCORE,
WHICH AT THE END OF THE DAY
WE'RE ALL ABOUT SERVING PEOPLE,
NOTED AS YOU SAY TRENDING THE
WRONG WAY, I'D BE CURIOUS HOW
THAT BENCHMARKS AGAINST OTHER
MAJOR HOSPITAL SYSTEMS, WHAT'S
JOHNS HOPKINS, WHAT'S MAYO, THEY
MUST SHARE THEIR SATISFACTION
RATING OR DO THEY NOT?
>> I'M GOING TO LET DR. REEL
ANSWER BECAUSE --
>> SO, I DON'T AT THIS MOMENT
HAVE AT MY FINGERTIPS A GOOD
COMPARATOR, BUT THE VENDOR
COMMUNITY CAN COUNT THINGS
DIFFERENTLY THAN I THINK -- JON
IS ONE OF THE MOST MODEST,
HUMBLE, DEDICATED, PASSIONATE
PEOPLE I KNOW IN THIS INDUSTRY
SO HIS ATTENTION TO THE WAY DATA
ARE CAPTURED AND REPORTED IS
UNIQUELY JON BECAUSE HE CARES SO
MUCH ABOUT OUR PATIENTS AND
PEOPLE WHO TAKE CARE OF OUR
PATIENTS THE I THINK WHAT THE
VENDOR COMMUNITY DOES TO KEEP
METRICS HIGH IS TO HAVE A SHADOW
SYSTEM, IF YOU WILL, SOMETHING
THAT IS AVAILABLE TO THE
PROVIDER 24/7 REGARDLESS WHETHER
THE SYSTEM IS DOWN, MAY NOT BE
TOTALLY INTEROPEARABLE.
IT'S A BIT OF COOKING THE BOOKS.
FROM THE USER COMMUNITY AS JON
SAID IF A USER SAYS IT'S DOWN,
IT'S DOWN.
THE USER DOESN'T SEE THE DOWN
TIME BECAUSE THERE'S A REPLICA
THAT'S MADE AVAILABLE TO THE
USER, ALMOST ALWAYS.
SO THAT'S --
>> WE CALL IT SUNDOWN.
SUNRISE, SUNDOWN.
SO WE DO HAVE A SYSTEM AND YOU
CAN PRINT LABELS BUT YOU CAN'T
ENTER DATA IN IT, RIGHT?
SO THAT'S HOW WE MEET THE HIMSS
ANALYTICS IN OUR REQUIREMENTS.
I THINK WHERE YOU ARE REFERRING
TO THE SATISFACTION COMPONENT
TOO?
THE SATISFACTION COMPONENT, I
HAVEN'T BEEN ABLE -- WE'VE TRIED
TO GET BENCHMARKS ACROSS AND
WE'VE NEVER HAD LUCK.
SO IT'S REALLY PERSONAL TO YOUR
ENVIRONMENT, YEAH.
SO-- THERE IS INDUSTRY CLASS
REVIEWS, EACH OF THEM,
IDENTIFIES THE PLUSES AND MINUS
AND SOME LEVEL OF SATISFACTION
FOR EACH OF THE VENDORS BUT MY
SCORES ARE BASED ON SURVEY
RESULTS.
THERE WAS 200 RESPONDENTS, A LOW
NUMBER GIVEN WE HAVE 4,000 USERS
BUT IT'S STILL NOT A POSITIVE
NUMBER.
>> EMPLOYEE ENGAGEMENT SCORING,
THERE'S THINGS LIKE I HAVE ALL
THE TOOLS AVAILABLE TO DO THE
JOB AS WELL AS POSSIBLE OR
SOMETHING LIKE THAT.
AND TYPICALLY AT HOPKINS WE DID
VERY WELL.
BUT IT'S BECAUSE THE TOOL SET IS
SO MUCH BIGGER THAN JUST AN EHR.
>> I KNOW THAT WASN'T A GOOD
ANSWER.
>> IF NO OTHER QUESTIONS --
TONY, GO AHEAD.
>> IT'S NOT A QUESTION, IT'S A
COMPLEMENT.
THANKS FOR ALL YOU DO AND FOR
BREAKING DOWN WHAT YOU MENTIONED
REGARDING THE -- THAT NIH IN
REFERENCE TO IT NOT BEING --
IT'S HIPAA EXEMPT, I'M GLAD YOU
BROKE THAT DOWN BECAUSE I WAS
GETTING A HEADACHE SINCE I HEARD
THAT.
BY THE WAY, YOU DO LOOK GREAT IN
ORANGE.
[LAUGHTER]
>> WELL, YEAH, THIS IS KIND OF
ORANGE.
I WEAR THIS TO MAKE SURE I'M
ALWAYS SMILING, BUT IT'S MY
STAFF.
DAVID INTERACTS WITH THEM.
WE HAVE TRISHA KOFFEY HERE, WE
MERGED WITH THEM.
WE HAVE A TREMENDOUS STAFF.
THEY ARE IN IT TO WIN IT EVERY
DAY.
WORKING 80-HOUR WEEKS, SOME OF
THEM.
SOME OF THEM THAT I TRIED TO GET
THEM TO ACTUALLY GO HOME.
WHEN WE'RE DOWN THEY HAVE TO BE
THERE.
THEY ARE ON THE PHONE.
IT'S EVERY SINGLE PHONE IN DCRI
INCLUDING EVERY SECTION, HIM,
THE TECHNICAL, CRIS BUILD,
SECURITY, I'M GOING TO --
TESTERS.
WE'RE VERY FORTUNATE OF THE
SKILL LEVEL OF THE STAFF THAT
WORK FOR US.
THANKED -- AND EVERYBODY THAT
USES THE SYSTEM.
I'M FINE HEARING CRITIQUES,
SOMETIMES I GO HOME EARLY BALLS
IT'S TOO MANY BUT I CAN'T GET
BETTER IF I DON'T HEAR THEM.
WE'RE FORTUNATE TO BE IN AN
ENVIRONMENT THAT MY STAFF, THE
STAFF, THEY ARE ALL VERY PROUD
AND NEED TO BE PROUD OF WHAT
THEY DO.
AND WE -- TRISH AND I TRY TO
SELL THAT EVERY DAY, BECAUSE
THEY ARE AMAZING.
>> ONE COMMENT, IF I MAY THEN.
AS A PATIENT ADVOCATE SITTING
HERE I CAN TELL YOU THERE WERE
PATIENT FOCUS GROUPS, THEY
DIDN'T FOR SOME REASON MAKE THE
LIST.
>> THAT'S MY FAULT.
>> THE PATIENT ADVISORY GROUP
WAS INVITED TO PARTICIPATE IN
FOCUS GROUPS AND I AND A NUMBER
OF OTHER PATIENTS HAD
CONVERSATION WAS DR. SANO, WHO
HAS BEEN THE INTERNAL COLLECTOR,
AND THE ONE THAT SETS UP THE
FOCUS GROUPS.
>> THANKS.
WE LOOK FORWARD TO HEARING AN
UPDATE ONCE THE VENDOR HAS BEEN
IDENTIFIED AND THE BUILD STARTS.
THANK YOU VERY MUCH FOR THAT.
NEXT TWO PRESENTERS, DR. ANN
BERGER AND DR. JOHN POLLACK,
PRESENTED TO THE BOARD TWO YEARS
AGO TO SHARE THE EFFORTS
PROVIDED BY THEIR TEAMS FOR
CLINICAL CENTER HOSPICE CARE FOR
PATIENTS.
SO TODAY THEY RETURN TO DESCRIBE
THEIR JOINT EFFORTS WITH A
WELLNESS INITIATIVE RECENTLY
LAUNCHED WHICH ALIGNS WITH THE
SURGEON GENERAL'S FRAMEWORK FOR
MENTAL HEALTH AND WELL-BEING
ESTABLISHED IN ASSOCIATION WITH
THE PANDEMIC.
THANK YOU.
>> THANK YOU FOR HAVING US.
JOHN AND I WILL TALK ABOUT THE
WELLNESS INITIATIVE AT THE
CLINICAL CENTER.
THAT WE STARTED PROBABLY ABOUT A
YEAR AND A HALF, TWO YEARS AGO
WITH THE UNDERSTANDING THAT
WELLNESS IS -- MENTAL HEALTH AND
WELLNESS IS ACTUALLY A LARGE
ISSUE, BURNOUT IS A LARGE ISSUE,
STRESS IS A LARGE ISSUE IN
HEALTH CARE AND IN THE
WORKPLACE.
I'M GOING TO SET UP WHY THIS IS
IMPORTANT, AND THEN JOHN IS
GOING TO GIVE US -- THE RESEARCH
AND JOHN WILL GIVE US DETAILS OF
WHAT'S GOING WITH THE PROGRAM
HERE.
AS HAS BEEN INDICATED, DURING
QUESTIONS LIKE DURING NURSING
MAGNET DISCUSSION, IT'S WELL
UNDERSTOOD THAT BURNOUT, STRESS,
ANXIETY IN THE WORKPLACE IS A
BIG PROBLEM.
U.S. SURGEON GENERAL PUT TALE A
-- TOGETHER A FRAMEWORK, AN
EXCELLENT READ IF YOU LOOK IT
UP.
IT STARTS WITH THIS FRAMEWORK OF
DEDICATED TO ALL WORKERS WHO
LOST THEIR LIFE DURING THE
PANDEMIC AND TO THEIR FAMILIES.
MAY THIS SERVE AS A CALL TO
ACTION TO LIFT UP THE VOICE OF
WORKERS PARTICULARLY THOSE MOST
VULNERABLE AND TO PROTECT THEIR
HEALTH AND WELL-BEING.
CERTAINLY IN HEALTH CARE, AS I
SAID OUTSIDE OF HEALTH CARE, BUT
CERTAINLY IN HEALTH CARE THE
BURNOUT HAS BEEN SO HIGH, STRESS
SO HIGH, THAT SUICIDE RATES ARE
UP AND THERE ARE ALL KINDS OF
ACTION BILLS LIKE THE LAUREN
GREEN, A BILL THAT CAME OUT, A
PHYSICIAN, E.R. PHYSICIAN WHO
COMMITTED SUICIDE DURING COVID
TIMES IN NEW YORK.
AND THEN HER FAMILY WORKED TO
PUT TOGETHER THIS BILL.
SO THERE'S A LOT OF
UNDERSTANDING, A LOT OF WORK IN
THE BIGGER FEDERAL AND
NON-FEDERAL ENVIRONMENT.
NEXT SLIDE PLEASE.
SAMHSA IS ALSO VERY COMMITTED TO
THE AREA OF BURNOUT AND MENTAL
HEALTH, AND SO THEY PUT TOGETHER
FIVE ESSENTIALS FOR WORKPLACE
MENTAL HEALTH AND WELL-BEING.
AND THERE ARE COMPONENTS
DISCUSSED, PROTECTION FROM HARM,
WHICH INVOLVES PHYSICAL AND
PSYCHOLOGICAL SAFETY, ENABLES
REST, NORMALIZES AND SUPPORTS
MENTAL HEALTH, AND
OPERATIONALIZES DEIA NORMS,
POLICY, AND PROGRAMS, INCLUDES
CONNECTION AND COMMUNITY, WITH
CULTURAL AWARENESS OF BELONGING,
CULTIVATE TRUSTED RELATIONSHIPS,
AND FOSTER COLLABORATION AND
TEAM WORK.
IT INVOLVES WORK LIFE HARM ANY,
PROVIDING AUTONOMY OVER HOW WORK
IS DONE, MAKING SCHEDULES MORE
FLEXIBLE, SOMETHING DONE VERY
MUCH DURING THE PANDEMIC AS WELL
AS POST-PANDEMIC TIME.
INCREASE ACCESS TO PAID LEAVE,
AND RESPECT BOUNDARIES BETWEEN
WORK AND NON-WORK TIME.
MATTERING AT WORK, PROVIDING A
LIVING WAGE, ENGAGING WORKERS IN
DECISIONS, BUILDING A CULTURE OF
GRATITUDE AND RECOGNITION IS
SOMETHING THAT HAS VERY MUCH
BEEN BUILT IN THE CLINICAL
CENTER AND IS CONTINUOUSLY BEING
RELOOKED AT AT GROWING MORE AND
MORE.
CONNECTING INDIVIDUAL WORK WITH
ORGANIZED MISSION.
AND THEN THE OPPORTUNITY FOR
GROWTH IS SOMETHING THAT
PARTICULARLY IN HEALTH CARE A
LOT OF PEOPLE ASK FOR AND IS
VERY BIG COMPONENT OF ESSENTIALS
FOR MENTAL WELL-BEING AND MENTAL
HEALTH IN THE WORKPLACE.
NEXT SLIDE.
SAMHSA'S THING HERE, DIAGRAM
SHOWS IT INVOLVES SOCIAL,
EMOTIONAL, INTELLECTUAL,
PHYSICAL, ENVIRONMENTAL,
FINANCIAL OCCUPATIONAL AND
SPIRITUAL.
AND AGAIN IT INVOLVES THE WHOLE
WORKPLACE AND THE WHOLE BEING, A
LOT OF THIS HAS TO DO WITH
BUILDING RESILIENCE.
AND THERE ARE ALL KINDS OF
NATIONAL PROGRAMS, TEAMS I'M ON
THAT ARE ACROSS THE FEDERAL
GOVERNMENT, AGAIN LOOKING AT
FEDERAL RESILIENCE AND HOW WE
BUILD THIS INTO OUR WORKPLACES
AND OUR COMMUNITIES AND OUR
STATES.
AND EVERYWHERE.
NEXT SLIDE.
NATIONAL ACADEMY OF MEDICINE HAS
ALSO IN THE PAST FEW YEARS TAKEN
THIS UPON THEMSELF TO HAVE
WORKSHOPS AND COLLABORATIVE
GROUPS ON THIS.
THERE ARE SUBSTANTIAL SYMPTOMS
IN HEALTH CARE PROVIDERS, 35 TO
54% MUCH NURSES AND PHYSICIANS
AND 45% TO 60% OF MEDICAL
STUDENTS AND LEARNERS.
CREATING A CULTURE OF WELLNESS,
THESE ARE SOME DRIVERS THAT LEAD
TO BURNOUT.
UNLESS ONE TRIES TO FIX THESE,
YOU WON'T HAVE ENGAGEMENT IN THE
WORK.
MUCH WORK WAS DONE AT MAYO.
MAYO HAS ROBUST NOT ONLY
WELLNESS PROGRAM BUT WELLNESS
RESEARCH, AND THEY HAVE ALSO
DEVELOPED A SURVEY FOR BOTH
HEALTHCARE PROVIDERS BUT GENERAL
WORKERS IN THE WORKPLACE FOR
WELL-BEING AND THIS IS A SURVEY
THAT WE WILL BE DOING HERE IN
THE FALL AND/OR WINTER.
WE'LL BE STARTING HERE.
IT'S BEEN A LITTLE PROCESS TO
GET APPROVED THROUGH ALL THE
DIFFERENT AREAS YOU NEED HAVE
APPROVED.
CULTURE WELLNESS IN THE CLINICAL
CENTER, WE SPOKE WITH DR.
GILMAN TWO YEARS AGO, YEAR AND A
HALF AGO, HE HAS BEEN AN AMAZING
SUPPORTER OF THIS.
ESSENTIALLY IS THE CHIEF
WELLNESS OFFICER AND WE WORK
WITH HIM TO DEVELOP THIS CULTURE
BECAUSE HE SUPPORTS THAT THIS IS
EXTREMELY IMPORTANT.
SO, WHAT ARE THE BENEFITS?
WELL, WHEN STRESS AND BURNOUT
ARE DECREASED THERE'S LESS STAFF
TURNOVER, REDUCED COSTS TO
RECRUIT AND RETAIN STAFF,
INCREASED PATIENT SATISFACTION,
DECREASED MEDICAL ERRORS, LESS
NEED FOR DISCIPLINARY ACTION,
IMPROVED WORK ENVIRONMENT.
WE WANTED A WELLNESS PROGRAM
THAT INVOLVED ALL STAFF FROM
LOADING DOCK BEDSIDE TO THE
C-SUITE BECAUSE CLEARLY IF THE
CULTURE OF WELLNESS IS NOT
THROUGHOUT THE HOSPITAL, NOT
JUST BEDSIDE CARE PEOPLE, WE
DON'T HAVE A WELL COMMUNITY.
SO, WE WANT EVERYBODY TO FEEL
SUPPORTED.
AND INCREASED FOCUS ON THE NIH
MISSION AND CLINICAL CENTER AS A
HOUSE OF HOPE TO DRIVE A SENSE
OF MEANING AND PURPOSE
THROUGHOUT THE ORGANIZATION.
BECAUSE AS I SHOWED WITH SAMHSA,
THE SPIRITUAL PIECE, MEANING AND
PURPOSE OF WHAT WE DO IS A VERY
IMPORTANT COMPONENT OF
DECREASING STRESS AND BURNOUT.
IF YOU REALLY FEEL IT'S
IMPORTANT TO COME TO WORK AND
WHY IT'S IMPORTANT AND
UNDERSTAND THAT, YOU'RE GOING TO
LOVE BEING HERE EVERY SINGLE
DAY.
AND SO I'VE ALWAYS SAID, MY WORK
HAS ALWAYS BEEN A SPIRITUAL
CALLING TO ME, AND THERE ISN'T A
DAY THAT I DON'T LOVE WHAT I'M
DOING.
AND EVERYBODY IN THE INSTITUTION
WE WANT TO FEEL THAT WAY.
AND THAT WILL THEN ALSO COME
ACROSS TO PATIENTS, SO IT'S
CRITICAL.
NEXT SLIDE.
SO, STATEMENT OF PURPOSE,
PROMOTE CULTURE OF WELLNESS,
WANT TO PROVIDE OVERSIGHT OF
EXISTING PROGRAMS, ALREADY
PROGRAMS HAVE BEEN GOING ON FOR
MANY YEARS.
DEVELOP NEW STRATEGIES AND
ENSURE INCLUSION OF ENTIRE
WORKFORCE.
OUR PROGRAMS IN THE PAST WERE
MORE DEDICATED TO HEALTHCARE
PROVIDERS ALONE.
NEXT SLIDE.
SO AS I SAID, MANY INITIATIVES
WERE ALREADY IN PROGRESS.
THESE INCLUDED ACG WELLNESS
COMMITTEE, NURSING WELLNESS,
PEER-TO-PEER DEBRIEFING,
MINDFULNESS, YOGA, ALL KINDS OF
THINGS.
JOHN WILL BE GOING OVER THESE AT
LENGTH.
THERE ARE NIH-WIDE PROGRAMS,
EAP, OIPE, R AND W, AND DoD.
SO THERE ARE A LOT OF WELLNESS
PROVIDES HERE AT THE NIH.
NEXT SLIDE.
PROGRESS TO DATE, WE ESTABLISHED
A LEADERSHIP, INVENTORIED
EXISTING PROGRAMS, A STEERING
COMMITTEE HAS BEEN FORMED.
THERE WAS AN INITIAL PROGRAM TO
REALLY GET THIS STARTED CALLED
CARE FOR THE CAREGIVER TRAINING.
THIS WAS OUT OF THE MARYLAND
SAFETY -- STATE OF MARYLAND
SAFETY OFFICE, OFFICE OF PATIENT
SAFETY.
IN CONJUNCTION WITH HOPKINS.
AND SO THEY DID A TRAINING AND
IT WAS A TWO-DAY THING.
ONE WAS WHY WELLNESS IS
IMPORTANT TYPE THING.
WE HAD ALL THE LEADERS, ALL THE
DEPARTMENT HEADS AT THIS.
THERE WERE OVER 100 PEOPLE
THERE.
AND THEN THE SECOND DAY WAS TO
LEARN THE ACTUAL HOW TO DO
PEER-TO-PEER TRAINING.
AND DO DEBRIEFINGS, SOME OF
WHICH WE WERE ALREADY DOING HERE
BUT A MORE HOW-TO.
AGAIN, WE HAD PROBABLY A FEW
HUNDRED PEOPLE DOM -- COME TO
THAT.
THERE WAS DESIRE TO GET THIS
PROGRAM GOING.
WE HAVE NOW 24/7, 365 DAY
ON-CALL AVAILABILITY, A
COMMUNICATION PLAN, THE PEOPLE
WORK CLOSELY WITH US.
WE HAVE A FUNCTIONING REALLY
GOOD WEBSITE THAT IS
CONTINUOUSLY BEING UPDATED.
WE HAVE QUALITATIVE METRICS JOHN
WILL REVIEW.
NEXT SLIDE.
WE DID A TRIAL ON ENHANCING
WELL-BEING AND A BRIEF
MINDFULNESS COURSE FOR
HEALTHCARE PROVIDERS IN THE
CLINICAL CENTER.
AND THIS IS ACTUALLY PUBLISHED
IN 2020 IN JAMA.
65 WOMEN, 13 MEN, MEDIAN AGE 32,
SETTING WAS CLINTON CAR CENTER,
AND THERE WAS A FIVE WEEKLY 1.5
HOUR IN-CLASS PRACTICE SESSION,
COMPARED TO A CONTROL GROUP.
PRIMARY OUTCOME WAS STRESS.
NEXT SLIDE.
MINDFULNESS GROUP SHOWED REDUCED
ANXIETY, IMPROVED AFFECT,
IMPROVED MINDFULNESS, ATTENDANCE
RATE POST-COURSE EVALUATION
RESPONSE RATE PROVIDED SUPPORT
FOR PROGRAM FEASIBILITY.
SINCE THAT TIME WE HAVE ACTUALLY
DONE SOME OTHER TRIALS OUTSIDE
OF THE CLINICAL CENTER, ONE AT
WALTER REED USING NATURE, THAT
IS PUBLISHED, AND TWO MORE THAT
WILL BE PUBLISHED IN THE SPRING,
ONE FOR HEALTH CARE PROVIDERS,
TAKING CARE OF COVID PATIENTS,
USING NATURE, PLUS OR MINUS
MINDFULNESS AND ONE FOR A
PROGRAM FOR TEACHERS WHO ARE IN
COLORADO.
WE SUPPORT WELL-BEING AND
RESEARCH ON THIS A LOT.
I'LL HAVE JOHN TALK ABOUT WHAT
EXACTLY THE NUTS AND BOLTS ARE
AND SOME METRICS.
>> THIS IS OUR OVERALL GUIDING
PICTURE I SUPPOSE WHERE THE
COMPONENTS OF WHAT SHOULD BE IN
A WELLNESS PROGRAM ARE.
SO PREVENTION, CERTAINLY.
SOMEONE AND SOME WAY OF
MONITORING ENVIRONMENTAL STRESS,
WHAT TO DO IN TERMS OF CRISIS,
WHAT WE CAN DO IMMEDIATELY, AND
WHERE WE NEED REFER.
WE'VE ALWAYS DONE I THINK A VERY
GOOD JOB ON CRISIS EVENTS.
AND PART OF THE PROGRAM NOW IS
REALLY TO FOCUS MORE OF OUR
ATTENTION ON WHAT DOES
PREVENTION LOOK LIKE AND HOW DO
WE FIND THINGS IN THE MOMENT
THAT DESERVE OUR FURTHER
ATTENTION.
COULD I HAVE THE NEXT SLIDE
PLEASE.
THE LARGEST PART OF THE PROGRAM
AT THE MOMENT AS FAR AS NUMBER
OF PEOPLE SERVING IN IT IS THE
PEER-TO-PEER SUPPORT.
THIS IS -- HAS ROOTS GOING BACK
PROBABLY 15 OR SO YEARS AGO AS
WELL, WHERE WE STARTED OFF AS A
PROGRAM WORKING WITH BEREAVEMENT
FOR WHEN PATIENTS DIED.
EVENTUALLY OVER THE COURSE OF
TIME THAT MODEL OF PEER SUPPORT
BECAME RECOGNIZED AS SOMETHING
THAT WAS USEFUL FOR MULTIPLE
KINDS OF EVENTS THAT BROUGHT ON
STAFF CRISIS THROUGHOUT THE
ORGANIZATION.
THE LARGEST THING I'M PROUD
ABOUT AS FAR AS THE PEER
CONFIDENCE, THESE ARE PEOPLE WHO
ARE TRAINED TO PROVIDE CARE,
MADE UP OF SOCIAL WORKERS,
CHAPLAINS, MENTAL HEALTH
PROFESSIONALS, AND NOW BRINGING
IN MORE TRAINED WHAT MIGHT BE
CALLED LAYPERSONS TO ASSIST IN
THAT PROJECT AS WELL.
BUT WE CAN DEPLOY THESE FOLKS
VERY QUICKLY.
A FEW MONTHS AGO THERE WAS A
VERY TRAGIC INCIDENT INVOLVING A
STAFF MEMBER AT HER -- WHILE
OUTSIDE OF WORK, THE MANAGER GOT
THE PHONE CALL, PHONE CALL CAME
TO US ABOUT TEN MINUTES LATER,
AND HALF AN HOUR LATER WE HAD
DEPLOYED A TEAM OF ABOUT FIVE
PEOPLE INTO THAT UNIT TO DEAL
WITH THE IMMEDIATE GRIEF AND
LOSS AND SHOCK OF THE SITUATION.
IT WAS A UNIT WHICH ALSO WAS
CLOSED AND LOCKED WITH PEOPLE
THAT COULD NOT STEP AWAY FROM
THEIR DUTIES, AND WE WERE ALSO
ABLE TO PROVIDE THREE OR FOUR
PEOPLE TO SIT AT A CONFERENCE
ROOM THROUGHOUT THE COURSE OF
THE DAY SO AS CLINICAL DUTIES
SLOWED DOWN THEY COULD STEP AWAY
AND TAKE ADVANTAGE OF THAT AS
WELL.
WE ALSO WERE ABLE TO IN OUR
HOSPICE UNIT FOR EXAMPLE A
NUMBER OF DEATHS, LONG-TERM
PATIENTS, AND THE TEAM WAS JUST
FEELING DEPLETED.
AND SO, AGAIN, IN THIS CASE IT
WAS A LONGER POINT OF VIEW,
WHERE WE WERE ABLE TO DEPLOY
PEOPLE TO MEET WITH ALL OF THE
STAFF WHO WERE INTERESTED OVER
THE COURSE OF ALL SHIFTS IN A
WEEK'S PERIOD.
SO AGAIN THAT'S PROBABLY THE --
I THINK THE FLAGSHIP OF THE
PROGRAM IS AVAILABLE 24/7
RESPONSE, AND RENEW PART IS THE
PEER CHAMPIONS, AGAIN FILLING IN
THAT SECTION OF ENVIRONMENTAL
STRESS, SO THEY WILL BE EMBEDDED
IN UNITS TO GET A SENSE OF
WHAT'S GOING ON IN A PARTICULAR
PLACE.
SOME EARLY WARNING BUT ALSO
KNOWLEDGEABLE ABOUT WELLNESS
RESOURCES AVAILABLE AT NIH AND
CLINICAL CENTER WHICH WHEN ONE
STARTS LOOKING AT INVENTORY,
IT'S A VERY, VERY LONG LIST.
THIS IS ALSO A NUMBER I'D LIKE
TO SEE AS ZERO.
SO MOST OF THE OTHER NUMBERS I
LIKE TO SEE GO UP.
BUT THIS ONE IS CERTAINLY ONE
WHERE ZERO IS A GOOD THING.
NEXT SLIDE PLEASE.
WE ALSO, IF THIS EFFORT IS ABOUT
COLLABORATION, THERE HAVE BEEN
MANY GOOD THINGS GOING IN THE
CLINICAL CENTER WITHIN
INDIVIDUAL DEPARTMENTS, THIS IS
AN EXAMPLE OF SOMETHING THAT IS
GOING ON IN THE NURSING
DEPARTMENT.
A NURSING RESPITE ROOM.
A WORD CLOUD OF WHY VARIOUS
NURSES HAD CHOSEN TO GO INTO THE
ROOM AND BE ABLE TO TAKE SOME
TIME AWAY AND RELAXATION CHAIR.
THESE ARE ACTUAL NURSES.
THEY WOULD ONLY AGREE TO BE IN
THE PICTURE IF THEY COULD REMAIN
MASKED, BUT THEY CLEARLY ARE
ENJOYING THEIR TIME THERE AS
WELL.
NEXT SLIDE.
AGAIN, MORALE.
THAT'S A COMPONENT OF ANY
WELLNESS PROGRAM AND OUR
MATERIALS MANAGEMENT DEPARTMENT
IS A LEADER THROUGHOUT THE
ORGANIZATION OF CELEBRATING THE
WORK, AND THIS IS ALSO A GROUP
OF WORKERS WHO, AGAIN, DON'T
HAVE A GREAT OPPORTUNITY TO SIT
DOWN AND GO TO PARTICIPATE IN A
TALK ON WELLNESS OR AN EXERCISE
IN MINDFULNESS MEDITATION.
WORK JUST DOESN'T PERMIT IT.
BUT THERE ARE TIMES, WINDOWS
WHERE STEPPING ASIDE,
CELEBRATING THE WORK, ARE
POSSIBLE.
AGAIN, I THINK THE SMILES ON
THESE FACES ARE FAIRLY GREAT
METRIC TO SEE THE SUCCESS OF
THAT PROGRAM.
NEXT SLIDE PLEASE.
DCRI HAS BEEN A LEADER I THINK
IN THE ORGANIZATION.
IN WELLNESS WITHIN A PARTICULAR
DEPARTMENT.
I THINK SOME OF THE NEEDS IN THE
BEGINNING OF COVID, THE I.T.
DEPARTMENT WAS AT THE FOREFRONT,
AND STRESS AND MAKING SURE THAT
EVERYBODY HAD THE TOOLS THEY
NEEDED TO DO THEIR WORK WAS
PARAMOUNT IMPORTANCE.
SO THESE INITIATIVES AS FAR AS
RELAXATION SESSIONS, CHAIR YOGA,
RELAXATION WITH MUSIC, BEGAN TO
TAKE ROOT IN DCRI.
ONE OF THE THINGS AS WE WERE
INVENTORYING WHAT PROGRAMS WERE
AVAILABLE IN THE CLINICAL CENTER
IN ORDER NOT TO DUPLICATE WHICH
PROGRAMS COULD WE LOOK AT AND
SAY, CAN WE EXPAND THE
FOOTPRINT, AND THIS IS AN
EXAMPLE OF ONE OF THOSE CASES
WHERE THE FIX WAS VERY EASY.
EXISTING PROGRAM, BROADER NOTICE
OF WHAT THE PROGRAM WAS, AND HOW
IT WAS AVAILABLE AND NOW PEOPLE
THROUGHOUT THE CLINICAL CENTER
ARE ABLE TO DROP INTO THESE AS
THEIR TIME AND INCLINATION
PERMIT.
JOHN, I THINK THEY ARE 15
MINUTES OR SO EACH AS I RECALL.
YES.
NEXT SLIDE PLEASE.
GOOD GRIEF AND CHOCOLATE, IT'S A
PROGRAM THAT'S BEEN WITH US FOR
QUITE SOME TIME BUT IT REALLY IS
AROUND CHILD DEATH.
AS YOU KNOW FROM YOUR OWN
EXPERIENCES IN YOUR OWN
HOSPITALS, PEDIATRICS IS A HARD
PLACE TO WORK.
AND THE RELATIONSHIPS GO QUITE
DEEP AND LOSSES ARE EQUALLY AS
DEEP.
AND SO GOOD GRIEF AND CHOCOLATE
IS A PROGRAM THAT MEETS
QUARTERLY, TIME IS TAKEN PERHAPS
FOR A SPEAKER WHO MIGHT BE ABLE
TO SHARE SOME INSIGHTS IN ITEMS
OF GRIEF AND LOSS MANAGEMENT BUT
ALSO AN OPPORTUNITY FOR PEOPLE
WHO WORK IN PEDIATRICS TO GET
TOGETHER TO EXPRESS THOUGHTS AND
FEELS AND EMOTIONS THAT THEY ARE
NOT REALLY OTHERWISE ABLE TO DO
IN -- WITHOUT A DEDICATED TIME.
AGAIN, ONE OF THE THINGS KEY TO
OUR SUCCESS IS REALLY ABOUT
COLLABORATION.
SO ON MOST SIDES YOU'LL SEE
COLLABORATORS.
SO THE NURSING DEPARTMENT ON THE
1 NORTHWEST AND PEDIATRIC
CLINIC, NUTRITION DEPARTMENT,
DCRI, RECREATION THERAPY, THE
NCI AND CHILDREN'S INN.
SO ALL OF THESE FOLKS COMING
TOGETHER AND TAKING LEADERSHIP
ROLE IN MAKING THIS WORK.
NEXT SLIDE PLEASE.
WE'VE ALSO LAUNCHED A NEW
WEBSITE, CLEARINGHOUSE FOR ALL
OF THE PROGRAMS THAT WE'VE GOT
GOING IN WELLNESS, IN THE
CLINICAL CENTER, WITH CLICKS FOR
RESOURCES WITH CLICKS FOR
ARTICLES TO REVIEW AND ITEMS OF
WELLNESS AND ALSO OPPORTUNITIES
FOR REVIEWING SOME OF THESE
PROGRAMS THAT WE'VE DONE, SO
WHEN BEAM HAVEN'T BEEN ABLE TO
JOIN THEM IN -- PEOPLE HAVEN'T
BEEN ABLE TO JOIN THEM IN REAL
TIME, TWO QUARTER NUMBER AT 590
HITS, ONE OF THE THINGS TOO OF
THE WE'VE DONE SOME PUBLICIZING
OF THINGS, COMMUNICATION PLAN IS
ONE OF THE THINGS THAT WILL BE
COMING ALONG, MORE ROBUST, BUT
SO FAR THE INTEREST IN ALL OF
THESE PROGRAMS HAS REMAINED
HIGH.
NEXT SLIDE PLEASE.
LIEUTENANT COMMANDER ABIGAIL
APPOINTED BY THE SURGEON
GENERAL, AND SHE'S THE HONORARY
MASCOT OF OUR WELLNESS
INITIATIVE.
SHE IS NAMED AFTER FIRST LADY
ABIGAIL ADAMS, JOHN ADAMS SIGNED
THE INITIAL LEGISLATION WHICH
THE ORGANIZATION WHICH
ULTIMATELY EVOLVED INTO THE
PUBLIC HEALTH SERVICE.
TRAINED WARRIOR K9 CONNECTION,
SHE'S A COMMISSIONED OFFICER,
AFFORDED CUSTOMS AND COURTESIES
OF ANY ACTIVE DUTY OFFICER
EXCEPT WITHOUT PAY AND PENSION,
87 ENCOUNTERS WITH STAFF OVER
THE COURSE OF THE LAST TWO
QUARTERS, AND WE'RE LOOKING
FORWARD TO GETTING HER MORE AND
MORE OUT INTO THE FIELD.
WE ALSO AT THE MOMENT HAVE A
WAITING LIST FOR DEPARTMENTS
THAT WOULD LIKE HER TO COME BY
AND VISIT.
I PARTICULARLY LIKE HAVING HER
HERE BECAUSE IF YOU DON'T LIKE
PRESENTERS, YOU DON'T LIKE THE
PRESENTATION, YOU CAN'T GO AWAY
UNHAPPY WITH THAT FACE AS PART
OF THE PROGRAM.
NEXT SLIDE PLEASE.
AND SO APRIL 23 THROUGH END OF
SEPTEMBER, THESE ARE THE
ENCOUNTERS.
I MUST ADMIT I WAS SURPRISED TO
SEE THE HIGH NUMBERS AS WE BEGAN
TO PULL DATA TOGETHER OF THE
MANY GOOD THINGS THAT HAVE BEEN
GOING ON FOR SOME TIME WHICH WE
HAVE ENCOUNTERED AND FOR SOME OF
THE NEW THINGS THAT HAVE COME
ONLINE.
APRIL WAS THE FIRST MONTH IN
WHICH WE STARTED TO COLLECT THE
DATA.
NEXT SLIDE.
AND SO WELLNESS CHAMPIONS, WE
HAVE A NUMBER OF TRAINED PEOPLE
TO BE EMBEDDED IN THE UNITS,
NEXT EMPHASIS NOW THAT'S RISEN
TO THE TOP IS TO PLACE MORE
PEOPLE IN DIFFERENT DEPARTMENTS,
AND SO WE WILL OVER THE NEXT FEW
MONTHS BE ENGAGING WITH
DEPARTMENT MANAGERS TO SAY WHO
COULD YOU IDENTIFY THAT WOULD
MAKE A GOOD WELLNESS CHAMPION IN
YOUR AREA.
WHO IS THE -- MAYBE THERE'S A
GO-TO PERSON.
WHO IS SOMEONE WHO HAS AN EASY
GENTLE PRESENCE, WHO WOULD BE A
GOOD PRESENTER WHEN THERE ARE
THINGS IN A STAFF MEETING TO
TALK ABOUT AS FAR AS WHAT
WELLNESS OPPORTUNITIES THERE ARE
GOING ON IN THE CLINICAL CENTER.
AND SO AGAIN PUSHING OUR
FOOTPRINT OUT FROM THE CLINICAL
UNITS, IS A TOP PRIORITY, WE'LL
BE DOING WELLNESS SURVEYS, DR.
BERGER MENTIONED.
WHAT ARE SYSTEMS THAT NEED TO BE
IN PLACE WHEN ISSUES OCCUR?
SOME OF THE THINGS ARE BIG RED
FLAG AND THINGS, MANY OF OUR
PEOPLE HAVE RECENTLY BEEN
AFFECTED BY WAR IN VARIOUS
PLACES, FAMILIES, COUNTRIES OF
ORIGIN.
THOSE ARE THINGS WE KNOW ABOUT
BUT WHAT OTHER THINGS ARE
COOKING ABOUT?
SO WHAT ARE OPPORTUNITIES WE
NEED TO DEVELOP FOR SPIRITUAL
GROWTH MEANING PURPOSE.
ONE OF THE THINGS THAT I FIND
WITH MOST WELLNESS PROGRAMS,
WORDS I CHOOSE TO USE ARE --
THEY OFTEN LEAVE ONE IN A PLACE
YOU'RE ALL DRESSED UP WITH
NOWHERE TO GO.
AT SOME POINT WHEN THERE'S A
STATE OF GENERAL WELL-BEING,
WELL, SO WHAT?
WHAT'S NEXT?
WHAT ARE OPPORTUNITIES WE MIGHT
BE ABLE TO OFFER AND CERTAINLY
MAY NOTE BE A BROAD BASEED THING
WHICH EVERYONE PAYS ATTENTION TO
BUT WILL THERE BE OPPORTUNITIES
FOR STAFF PEOPLE TO THINK ABOUT
ABOUT PURPOSE, OPPORTUNITIES FOR
GROWTH.
WHAT WOULD ENHANCE THEIR OWN
WELL-BEING IN ORDER TO BRING
MORE OF THEMSELVES INTO THE
CLINICAL CARE OF OUR PATIENTS?
AND, AGAIN, ALL FLOWING INTO
ORGANIZATIONAL MORALE.
NEXT SLIDE.
ALL RIGHT.
IT'S YOUR TURN.
>> THANK YOU.
GREAT PRESENTATION.
ANY QUESTIONS?
IT'S GOOD TO SEE THESE PROGRAMS,
YOU'VE IDENTIFIED SOME AT-RISK
FOLKS.
THE EVENING AND WEEKEND STAFF
GENERALLY DON'T GET A LOT OF
ATTENTION BECAUSE MOST THINGS
ARE DURING THE WORK WEEK, DURING
THE DAY.
DO YOU HAVE A CARE CART THAT
TAKES SNACKS AND THINGS?
>> WELL, ONE OF THE THINGS WE --
A CORNERSTONE OF THIS IS
COLLABORATION.
SO WHERE THERE ARE OTHER
DEPARTMENTS WORKING ON IT, WE
WORK ALONG WITH THEM.
SO THE NURSING DEPARTMENT IS
WORKING ON A CARE CART.
BARBARA MIGHT WANT TO SAY A WORD
ON THAT.
>> YES, WE HAVE A GROUP WORKING
ON CODE LAVENDER, WHERE SOMEONE
IS IDENTIFIED, THE PERSON
SELF-IDENTIFIES OR MAY OBSERVE
SOMEONE IN DISTRESS SO WE HAVE A
CART THAT WILL HAVE ALL
DIFFERENT TYPES OF EITHER TREATS
OR TEAS, IT WILL STAY ON THE
OPPORTUNITY. -- UNIT.
IT'S NOT JUST THE INDIVIDUAL BUT
CAN BE THE UNIT, SOMETHING WE'RE
LOOKING TO LAUNCH VERY SOON.
>> ONCE IT IS WORKING IN A
PARTICULAR AREA, HOW CAN WE
ENLARGE THE FOOTPRINT AND TAKE
IT TO OTHER PLACES.
>> TONI?
>> AGAIN, THANKS FOR YOUR GREAT
PRESENTATION.
AS A PATIENT HERE AT NIH, I
REALLY BENEFITED FROM THE
SERVICES OF JOHN POLLACK AND DR.
BERGER BECAUSE WITHOUT THEIR
ASSISTANCE, BEING IN MY SPACE, I
DON'T THINK I WOULD HAVE BEEN
ABLE TO MAKE IT.
I'M GLAD THAT YOU ALL HAVE
EXPANDED THE SERVICES THAT YOU
PROVIDED ME, AS A PATIENT, THE
RELAXATION CHAIR, AS WELL AS THE
SERVICE ANIMAL BECAUSE WHEN I
WAS AN INPATIENT JUST HAVING THE
ANIMAL COME AND LAY NEXT TO YOU
IN THE BED, IT REALLY, REALLY --
IT WAS VERY HEALING FOR ME
BECAUSE I WAS HERE A LONG TIME,
FROM TIME TO TIME.
AND I'M SO HAPPY TO HEAR THAT
THESE SERVICES HAVE BEEN
EXPANDED TO THE STAFF BECAUSE I
IMAGINE WHAT THEY ARE GOING
THROUGH AFTER COVID OR DURING
COVID, AS WELL AS LIKE YOU SAID
WITH ALL THE PATIENTS THAT HAVE
BEEN PASSING AND SUCH.
THANK YOU.
>> AGAIN, COLLABORATION.
COLLEAGUES IN THERAPY AND ANIMAL
PROGRAM AS FAR AS GETTING
ANIMALS TO THE BEDSIDE,
LIEUTENANT COMMANDER ABIGAIL
ALSO PARTICIPATES IN THAT
PROGRAM.
SO AGAIN THERE'S A LOT OF
CROSSOVERS, AND REALLY HOPING TO
BUILD ON THOSE THINGS THAT ARE
ALREADY PRESENT AND FOCUS THEM.
>> THANK YOU VERY MUCH.
THIS IS REALLY GREAT.
OUR WORK IS NOT GETTING LESS
STRESSFUL, THAT'S FOR SURE.
THANK YOU VERY MUCH.
>> THANK YOU.
>> WE HAVE ONE LAST
PRESENTATION.
DR. ANDREW SINGLETON, DIRECTOR
OF INTRAMURAL EFFORT, CENTER FOR
ALZHEIMER'S AND RELATED
DEMENTIAS, OR CARD
FOR THIS HIGH PRIORITY RESEARCH
PROGRAM.
>> THANKS SO MUCH FOR THE
OPPORTUNITY TO TALK TODAY.
I REALLY WANT AN ABIGAIL NOW.
AWESOME NOT JUST FOR
PRESENTATIONS BUT KEEPING THE
STRESS DOWN, A WONDERFUL
PRESENTATION.
I'M GOING TO TALK ABOUT THE
CENTER FOR ALZHEIMER'S AND
RELATED DEMENTIAS.
IF THERE'S ONE THING YOU CAN
TAKE AWAY FROM THIS
PRESENTATION, THIS IS REALLY A
VERY COLLABORATIVE INITIATIVE,
JOINT BETWEEN NATIONAL INSTITUTE
OF AGING AND NEUROLOGICAL
DISORDERS AND STROKE BUT MUCH
BROADER THAN THAT.
WE'RE WORKING WITH FOUR OR FIVE
INSTITUTES, THE STRUCTURE IS
UNIQUE AND THE SUPPORT IS
UNIQUE.
THE IDEA FOR THE CENTER CAME
ABOUT OVER CHRISTMAS 2018.
YOU ALWAYS GET AN E-MAIL FROM
YOUR BOSS IN THE BEGINNING OF
DECEMBER, HEY, I'VE GOT A GREAT
IDEA, CAN YOU WORK ON THIS OVER
CHRISTMAS?
SO THIS IS WHAT I WORKED ON OVER
CHRISTMAS.
THE NOTION WAS A REALLY BIG
INVESTMENT IN ALZHEIMER'S
DISEASE AND RELATED DEMENTIAS.
DEMENTIA WITH LEWY BODIES,
FRONTOTEMPORAL, VASCULAR
DEMENTIA, A LARGE INCREASE IN
FUNDING, LOTS OF GRANTS AND
INITIATIVES.
WE STARTED TO THINK ABOUT THE
INTRAMURAL PROGRAM.
WHAT COULD WE CONTRIBUTE?
CLEARLY A PRESSING PROBLEM, OUR
POPULATION IS AGING, THESE
DISEASES ARE BECOMING MORE OF A
BURDEN.
WHAT CAN WE DO INTERNALLY?
WE TALK ABOUT WHAT'S SPECIAL
WITHIN THE INTRAMURAL PROGRAM.
WITHIN THE INTRAMURAL RESEARCH
PROGRAM AT THE NIH.
IF WE COULD GO TO THE NEXT
SLIDE, I'LL TALK ABOUT THE
RATIONALE FOR HOW WE DEFINE
THIS.
WE HAVE A STRUCTURAL
OPPORTUNITY, STABLE GENEROUS
RESOURCES.
WE'RE SECURE, WE KNOW WE CAN
STICK AROUND FOR A LONG TIME.
THIS IS IMPORTANT.
OUR REVIEW IS NOT PERSPECTIVE.
WE CAN MOVE QUICKLY.
WE DON'T HAVE TO GO THROUGH THE
USUAL GRANT CYCLES OF COMING UP
WITH AN IDEA, WRITING A
PROPOSAL, GETTING TURNED DOWN,
TRYING AGAIN, REPEAT.
WE CAN JUST GO WITH IDEAS AS
THEY COME ALONG AND COURSE
ADJUST.
THERE'S POTENTIAL TO FIND OUR
OWN METRICS OF SUCCESS.
OUR SUCCESS DOESN'T HAVE TO BE
DRIVEN BY A PUBLICATION
NECESSARILY, WHICH OFTEN IS IN
THE OUTSIDE WORLD BUT RATHER
TANGIBLE PROGRESS TOWARDS A
FINAL GOAL.
WE COULD GO TO THE NEXT SLIDE
PLEASE.
I THINK WITH THAT OPPORTUNITY
WITH THAT STRUCTURAL OPPORTUNITY
THERE'S A LOT OF RESPONSIBILITY.
WE'RE IN WHAT I THINK OF AS A
DIFFERENT AND SOMEWHAT
PRIVILEGED POSITION SO WE HAVE A
RESPONSIBILITY.
I THINK WE SHOULD BE TAKING ON
PROJECTS THAT JUST AREN'T EASY
TO ADDRESS IN THE OUTSIDE WORLD.
EITHER BECAUSE THEY ARE TOO LONG
TERM OR TOO HIGH RISK, WE
SHOULDN'T BE TRYING TO COMPETE
WITH OTHER INITIATIVES.
WE SHOULD BE COMPLEMENTING
CURRENT RESEARCH ACTIVITIES.
ADDRESSING CRITICAL RESOURCE
AREAS, REQUIRED RESEARCH GAPS,
I'LL TALK MORE ABOUT HOW WE'RE
DOING THIS ALREADY.
GOING BACK TO METRICS OF
SUCCESS, FOCUS EXCLUSIVELY ON
RESEARCH PROGRESS, ONLY ON
PROGRESS.
NEXT SLIDE PLEASE.
SO WE CREATED THIS CENTER WHICH
HAS A CLEAR MISSION TO INITIATE
STIMULATE ACCELERATE SUPPORT IN
ADRD LEADING TO TREATMENT AND
CURE, WHETHER DIRECTLY OR
ACCELERATING ROLE, SUPPORT ROLE,
I DON'T MIND AS LONG AS WE'VE
MADE A DIFFERENCE.
NEXT SLIDE PLEASE.
SO WE HAVE SOME PROGRAMMATIC
PRIORITIES, I'VE HINTED AT THESE
ALREADY A LITTLE BIT.
AND THEY ARE QUITE DIFFERENT.
WE HAVE PRIORITIZED PROJECTS
THAT REQUIRE HIGH TOLERANCE FOR
FAILURE AND WE'LL SEE IF THE
REVIEWERS AGREE WITH ME WHEN WE
GET TO REVIEW, THAT IF A DECENT
PROPORTION OF PROJECTS ARE NOT
FAILING THEN WE'RE NOT TRYING
THINGS THAT ARE DIFFICULT
ENOUGH.
WE ALSO ARE TAKING ON RAPIDLY
EMERGING OPPORTUNITIES.
THIS IDEA WE HAVE STABLE MONEY
AT NIH, THE INTRAMURAL PROGRAM,
MEANS WE CAN BE REALLY QUICK AND
NIMBLE AS NEW THINGS COME ALONG,
NEW TECHNOLOGIES, OPPORTUNITIES
EVOLVE WE CAN JUMP ON THEM
QUICKLY, THERE'S NOT THAT LAG
YOU HAVE IN THE OUTSIDE WORLD.
AN ADVANTAGE IN THE OTHER SPACE,
WE CAN TAKE ON REALLY LONG-TERM
PROJECTS, SOMETHING THAT'S
PERSONALLY BEEN VERY BENEFICIAL
TO ME.
I'VE BEEN AT NIH FOR 22 YEARS
NOW.
AND SOME OF THE PROJECTS I WORK
ON, WE STARTED 15 YEARS AGO AND
WE'RE STILL WORKING WITH THE
SAME INVESTIGATORS AND CAN
PROVIDE THAT STABILITY.
WE'RE FOCUSING ON CHALLENGES ON
PRODUCING PLATFORMS OR
INFRASTRUCTURE OR RESOURCES THAT
ARE GENERALLY AND BROADLY USEFUL
TO THE OUTSIDE WORLD.
SO IS THERE SOMETHING THAT'S
NEEDED JUST A PLATFORM OR PIECE
OF DATA OR A RESOURCE THAT'S
NEEDED?
WE'RE EXTREMELY FOCUSED ON
COLLABORATION AND COORDINATION.
I HINTED AT THAT INTERNALLY.
BUT ALSO EXTERNALLY.
AND THE OTHER PART THAT I THINK
WE CAN DO REALLY WELL HERE, WHEN
PEOPLE COME TO NIH AND THEY ARE
INTERVIEWING FOR A JOB THEY ASK
ME WHAT'S SPECIAL ABOUT NIH, THE
INTRAMURAL PROGRAM.
ONE SPECIAL THING IS THAT THERE
ARE I DON'T KNOW 20,000, 25,000
PEOPLE WORKING HERE, IF YOU
DON'T KNOW HOW TO DO SOMETHING,
SOMEONE HERE KNOWS HOW TO DO IT.
AND THEY WILL PROBABLY DO IT FOR
YOU.
BECAUSE IT'S AN EXTREMELY
COLLABORATIVE SPACE.
WE'RE NOT COMPETING WITH EACH
OTHER FOR MONEY.
AND I THINK THE PEOPLE HERE ARE
GIVEN BY IDEAS AND EXCITEMENT SO
COLLABORATION IS EASY AND WE CAN
SPAN DISEASE AND METHODOLOGIC
BOUNDARIES.
THESE ARE THE TEAMS.
I EXPECT THESE TO CHANGE.
IF ALL THINGS I'VE TALKED ABOUT
ARE TRUE, WE CAN BE NIMBLE AND
QUICK AND CHANGE COURSE, THESE
WILL PROBABLY CHANGE.
THIS IS WHERE WE'RE STARTING
WITH.
SO, UNDERSTANDING THE BIOLOGY OF
DISEASE ANCHORED IN GENETICS,
UNDERSTANDING WHAT THE DISEASE
IS FROM A BIOLOGICAL
PERSPECTIVE.
UNDERSTANDING WHAT THESE
DISEASES ARE MECHANISTICALLY, SO
SUBTYPING EACH OF THESE
ALZHEIMER'S DISEASE AND RELATED
DEMENTIA DISORDERS INTO
DIFFERENT MECHANISTIC CLINICAL
PATHOLOGICAL SUBTYPES.
REDUCING RISK FOR COMPANIES TO
TAKE ON THERAPEUTIC STRATEGIES,
EITHER BY DEVELOPING NEW
THERAPEUTIC APPROACHES OR
DE-RISKING TARGETS.
THERE IS AN ABUNDANCE OF TARGETS
BUT TARGETS WITH LITTLE
ADDITIONAL DATA OUT THERE THAT
JUST MAKE THEM TOO RISKY FOR
STARTUPS TO TAKE ON.
SO WE'RE WORKING IN THAT SPACE.
AND LASTLY THE PIECE THAT'S TIED
THIS TOGETHER IS DEVELOPMENT AND
APPLICATION OF PRECISION OF
THERAPEUTICS, UNDERSTANDING
BIOLOGY, WHICH PATIENTS HAVE
WHICH BIOLOGY, DEVELOP TARGETS
AND THERAPEUTIC APPROACHES,
APPLY THOSE APPROACHES TARGETING
THE RIGHT PATIENT AT THE RIGHT
TIME WITH THE RIGHT MECHANISM.
AS IMPORTANT TO ME AS THE
SCIENTIFIC THEMES, THESE
ORGANIZATIONAL PRIORITIES,
DIVERSIFYING RESEARCH ENDEAVOR
AT EVERY LEVEL, BOTH IN THE
FOLKS THAT ARE DOING THE WORK
BUT ALSO IN THE SUBJECTS OF OUR
WORK.
DEMOCRATIZATION OF DATA SO THIS
ISN'T DATA SHARING, THIS IS DATA
SHARING AND ENABLING THE
COMMUNITY TO BE ABLE TO DO
USEFUL THINGS WITH THAT DATA.
COLLABORATION AND COOPERATION,
I'VE SAID THAT SEVEN OR EIGHT
TIMES TODAY ALREADY.
BEING TRANSPARENT.
WE TALK ABOUT REPRODUCIBILITY
AND I THINK TRANSPARENCY IS KEY
TO THAT.
AND THEN UNDERLYING ALL OF THIS
IS OUR WORK BEING FOUNDATIONAL,
IS IT BEING ACTIONABLE?
YOU CAN PUT OUT AN INTERESTING
DISCOVERY BUT UNLESS SOMEONE CAN
DO SOMETHING USEFUL WITH IT,
IT'S KIND OF A WASTE OF TIME.
SO EVERYTHING WE DO HAS TO BE
ACTIONABLE.
NEXT SLIDE PLEASE.
SO, I HINTED EARLIER, ONE OF THE
GREAT THINGS ABOUT THE
INTRAMURAL PROGRAM IS HUMAN
TALENT WE HAVE IN THE INTRAMURAL
PROGRAM.
A LOT OF SMART PEOPLE HERE AT
NIH, ACTUALLY IN THE INTRAMURAL
PROGRAM AND IN THE EXTRAMURAL
PROGRAM.
SO WE'VE TRIED TO LEVERAGE THAT
BY CREATING AN IDEA FACTORY FOR
ALZHEIMER'S DISEASE AND RELATED
DEMENTIA RESEARCH, THAT'S WHAT
THE CIRCLE IS.
STARTING IN THE IRP GOING OUT
AND HAVING DISCUSSIONS WITH
INDUSTRY, WITH FOUNDATIONS,
BRINGING IN EXTERNAL SPEAKERS,
EXTERNAL GROUPS TO GIVE US IDEAS
ABOUT BARRIERS TO PROGRESS AND
CRITICAL RESEARCH QUESTIONS.
WE GO THROUGH THE SERIES OF DUE
DILIGENCE, THIS IS A NEED IN
ADRD SPACE, DOES IT FIT OUR
MISSION?
YOU'VE SEEN THE MISSION.
SECONDLY, DOES IT FIT
PROGRAMMATICALLY?
EVERYTHING WE'RE DOING IN CARD
IS INTERRELATED.
I CAN THINK OF ONLY ONE OF 20,
25 PROJECTS THAT SITS BY ITSELF,
ALL OF THE OTHERS ARE
INTERRELATED.
AND THE IDEA IS OF COURSE THE
WHOLE BECOMES MUCH GREATER THAN
THE SUM OF THE INDIVIDUAL PARTS.
WE GO THROUGH THE CIRCULAR
PROCESS AND DEFINE CRITICAL
PROBLEMS, FIGURE OUT DOES THE
PROGRAM FIT, DOES THE MISSION
FIT, ARE WE THE RIGHT PEOPLE TO
DO THEM? -- TO DO THIS.
IF WE ARE, HOW DO WE DO IT?
THE TEMPTATION IS TO DO THINGS
INTERNALLY.
THAT'S NOT NECESSARILY WHAT
WE'RE DOING IN CARD.
WE OUTSOURCE A LOT OF WORK TO
CROs, ACADEMIC COLLABORATORS,
INDUSTRY, AND WE'VE CREATED
INTERNAL EXPERTISE BOTH VISITING
SCIENTISTS, SO I MENTIONED
EARLIER THAT WE WORK WITH OTHER
INSTITUTES.
WE HAVE CURRENT INVESTIGATORS
WHO ARE AT NIH, WHO HAVE A
POSITION IN CARD AND WORK ON
CARD PROJECTS SO THEY COME AND
RUN PROJECTS IN CARD, KEEP THEIR
OWN LAB, WORKING WITH
INVESTIGATORS FROM NHGRI, NIDDK,
NINDS, NIA, NOW STARTING TO WORK
WITH NCATS, SO AGAIN THE IDEA IS
THAT ANYONE CAN COME AND
CONTRIBUTE TO CARD.
NEXT SLIDE PLEASE.
AND THEN THE REALLY CRITICAL
PART ABOUT ALL OF THIS IS
BECAUSE OF THE NATURE OF OUR
FUNDING, OUR FUNDING IS FOCUSED
ON AD/ADRD, WE CAN'T DRIFT OUT
OF THAT SPACE.
WE HAVE A CONTINUAL ASSESSMENT
PROCESS WHERE EVERY PROJECT IS
RUN BY A PROJECT MANAGEMENT
GROUP, CHECK IN EVERY SIX
MONTHS, ARE WE ON COURSE, DO WE
NEED TO MAKE COURSE CORRECTIONS,
HAVE WE COME TO A PLACE TO MAKE
A GO/NO-GO DECISION AND MOVE
FORWARD?
I'M TRYING TO DESCRIBE A
FLEXIBLE STRUCTURE THAT COMES UP
WITH NEW IDEAS, DECIDES WHETHER
THEY SHOULD BE JUST DONE,
WHETHER WE'RE THE RIGHT PEOPLE
TO DO THEM AND CREATES A
SOLUTION TO EXECUTE THE PROJECT,
THAT FITS THE PROJECT RATHER
THAN FITS OUR GROUP.
NEXT SLIDE PLEASE.
SO YOU CAN GO NOW TO THE NIH
WEBSITE AND PROPOSE A RESEARCH
PROJECT FOR US TO WORK ON.
WE HAVE 20 OF THESE NOW.
INVESTIGATORS COME UP WITH AN
IDEA, WE'VE MET OVER A SERIES OF
MEETINGS, FLESHED OUT THE IDEA,
USUALLY CHANGES AND WE'VE GONE
ON TO EXECUTING PROJECTS.
THIS IS SOMETHING WE'VE BEEN
DOING ON THE BASIC SIDE BUT I
FULLY EXPECT THIS TO WORK ON THE
CLINICAL RESEARCH SIDE TOO.
AGAIN, COLLABORATION, LEVERAGING
THE HUMAN TALENT THAT'S BOTH IN
NIH AND OUTSIDE OF NIH.
NEXT SLIDE PLEASE.
SO, CURRENTLY WE HAVE A PHYSICAL
PRESENCE.
OUR BUILDING, WE STARTED TO
OCCUPY A BUILDING IN MARCH OF
LAST YEAR, IT WASN'T FUNCTIONAL
UNTIL AROUND JULY OR AUGUST.
WE'VE BEEN THERE ABOUT A YEAR
AND TWO OR THREE MONTHS,
SOMETHING LIKE THAT.
IT'S A T4 4, CENTER FOR
ALZHEIMER'S AND DEMENTIA
RESEARCH.
24,000 SQUARE FEET, HALF IS LAB
SPACE.
THIS IDEA WE TAKE ON PROJECTS,
THINGS CHANGE, ALL THESE BENCHES
AND STRUCTURE IS MODULAR AND CAN
BE MOVED.
ELECTRICITY COMES FROM THE ROOF.
WE CAN MOVE THINGS AROUND
QUICKLY, EVERYTHING IS SUPPOSED
TO BE OPEN AND FLEXIBLE.
SO ABOUT HALF OF THE SPACE IS
LAB.
NEXT SLIDE PLEASE.
AND THEN ABOUT HALF OF THE SPACE
IS DESK AND OPEN OFFICE.
WE HAVE ROOM FOR 130 PEOPLE.
HALF OF THE OFFICES ARE
BOOKABLE.
THE REST ARE PERMANENT OFFICES.
AND WE HAVE A VERY LARGE
COMPUTATIONAL DATA SCIENCE
PRESENCE THERE.
THE IDEA HERE IS OF COURSE THAT
PEOPLE CAN COME ALONG IF THEY
ARE WORKING ON A PROJECT FOR SIX
MONTHS, WE GIVE THEM SOME SPACE,
THEY CAN COME AND GO PRETTY
FREELY.
NEXT SLIDE PLEASE.
THIS IS THE STRUCTURE OF CARD.
THINGS I'VE TALKED ABOUT SO FAR
ON THE BASIC AND EARLY
TRANSLATIONAL RESEARCH PROGRAM
SIDE.
NEXT SLIDE PLEASE.
THERE ARE A BUNCH OF
INITIATIVES.
I TALK ABOUT THESE BECAUSE THEY
WILL BE RELEVANT AS WE EXPAND
OUR CLINICAL AND TRANSLATIONAL
RESEARCH PROGRAM.
SO WE HAVE ARDIS AND ARDRF FOR
EARLY INVESTIGATORS, FOLKS THAT
ARE LESS THAN FOUR YEARS FROM
THEIR DOCTORAL DEGREE, WE GIVE
THEM INDEPENDENT RESOURCES, GIVE
THEM STAFF, THEY ARE A P.I. AND
RUN THEIR OWN PROJECT.
THIS IS TO FIND REALLY TALENTED
EARLY CAREER INVESTIGATORS, GIVE
THEM RESOURCES FOR A FEW YEARS,
AND ALLOW THEM TO SUCCEED.
WE ESTABLISHED A GRANT MECHANISM
TO ALLOW THEM TO GET MONEY TO GO
ELSEWHERE.
WE HAVE TENURE-TRACK
INVESTIGATORS, NOT MANY.
WE HAVE ONE STARTING ON MONDAY
ACTUALLY, ADVERTISING FOR A
SECOND NOW.
BUT THE MAJORITY OF PROJECTS ARE
RUN BY VISITING INVESTIGATORS
FROM OUTSIDE, PEOPLE WHO COME TO
CARD TO RUN PROJECTS.
SUPPORTING THOSE ARE EXPERT
GROUPS IN DATA SCIENCE, ADVANCED
ANALYTICS, SINGLE CELL
SEQUENTIALING, PROTEOMICS,
GENETICS, LONG READ GENETICS.
I THINK THEY ARE ALL
INTERRELATED.
I'LL SKIP THROUGH THE NEXT
SLIDES QUICKLY.
THE DETAILS OF THE PROJECTS
DON'T MATTER TOO MUCH BUT WHAT
WE'RE TRYING TO ACHIEVE I THINK
MATTERS BECAUSE, AGAIN, I THINK
IT WILL INFORM HOW WE APPROACH
OUR CLINICAL PROGRAM.
NEXT SLIDE PLEASE.
SO, THIS IS A PROGRAM TO CREATE
AN UNDERSTANDING OF WHAT'S GOING
ON AT THE SINGLE CELL LEVEL IN
ANCESTRALLY DIVERSE BRAINS FROM
NABEC AND HBCC.
LOTS OF DATA IS PRODUCED AND
AVAILABLE BUT USUALLY ONLY
PRODUCED IN PEOPLE WITH NORTHERN
EUROPEAN ANCESTRY.
THIS IS AN EFFORT TO PRODUCE
REFERENCE DATA IN A MORE
ANCESTRALLY DIVERSE GROUP.
NEXT SLIDE PLEASE.
MODELING CELLULAR SENESCENCE
WE'RE TRYING TO UNDERSTAND WHAT
HAPPENS TO CELLS OVER TIME AND
CREATE A MODEL THAT
RECAPITULATES KEY ASPECTS OF
AGING.
NEXT SLIDE.
DRIVING AGING AGAIN IN CELLULAR
SYSTEMS WE DON'T -- WE WORK IN
CELLS SO MUCH BUT DON'T WORK IN
AGING CELLS, AGING IS A LARGE
PART OF THE DISEASE, THIS IS
CRITICAL.
NEXT SLIDE PLEASE.
CREATING A RESOURCE, AGAIN HERE
YOU'VE ALL HEARD OF INDUCED
PLURIPOTENT STEM CELLS THAT YOU
CAN TURN INTO ANY KIND OF CELL
YOU WANT, AN AMAZING DISCOVERY.
BUT THE SOURCES OF THOSE CELLS
TEND NOT TO BE PARTICULARLY
DIVERSE SO WE'VE BEEN WORKING
WITH THE ALZHEIMER'S DISEASE
NEUROIMAGING INITIATIVE TO
CREATE MORE DIVERSE ANCESTRALLY
DIVERSE GROUP OF iPS LINES
THAT CAN BE USED BY THE
COMMUNITY.
THE FIRST THING WE'RE DOING IS
MAKING THESE AVAILABLE TO
BROADER RESEARCH COMMUNITY.
NEXT SLIDE PLEASE.
THIS IS A REALLY IMPORTANT
TOPIC.
ONE OF THE THINGS THAT IS A
PARTICULAR CHALLENGE AS WE
GENERATE MORE GENETICS DATA IS
THAT CLINICIANS AND PATIENTS AND
VARIANTS MUCH UNKNOWN
SIGNIFICANCE, A CHANGE BUT YOU
DON'T KNOW WHETHER IT'S INVOLVED
IN DISEASE.
WE'RE TRYING TO CREATE A PATHWAY
WHICH WILL ALLOWS US TO
DETERMINE WHETHER GENE CHANGES
ARE LINKED TO DISEASE OR NOT.
INCREDIBLY IMPACTFUL FOR
PATIENTS, ALSO IMPACTFUL FOR
TRIALS AS WE MOVE TOWARDS
PRECISION THERAPEUTICS.
NEXT SLIDE PLEASE.
THIS IS ANOTHER RESOURCE
PROJECT, PEOPLE ALL OVER THE
WORLD ARE GENERATING iPS LINES
TO STUDY THEIR OWN PARTICULAR
GENETIC FLAVOR OF DISEASE.
THEY ARE ALL BEING GENERATED IN
SLIGHTLY DIFFERENT WAYS,
DIFFERENT QUALITY CONTROLS, WE
DECIDED TO DO IT FOR EVERYBODY.
HERE WE'VE CREATED 800 LINES
DISTRIBUTED ALL OVER THE WORLD
NOW.
NEXT SLIDE PLEASE.
THIS IS AN EFFORT TO EXPAND OUR
UNDERSTANDING OF DEMENTIA IN AN
UNDERREPRESENTED POPULATION, SO
WITHIN LATIN AMERICA WHERE
THERE'S A HUGE AMOUNT OF
ANCESTRAL DIVERSITY.
NEXT SLIDE PLEASE.
AGAIN, SIMILAR FOR STROKE AND
VASCULAR DEMENTIA, LOOKING AT
MOSTLY AFRICAN AMERICAN AND
BLACK AMERICAN POPULATION AND
NORTHERN EUROPEAN POPULATION.
NEXT SLIDE PLEASE.
A NEW DISCOVERY WE JUST MADE
SHOWED VIRAL EXPOSURE AND SEVERE
INFECTION INCREASES RISK FOR
NEURODEGENERATION SO WE'VE
STARTED A NEW PROGRAM WITH THE
INSTITUTE FOR ENVIRONMENTAL
HEALTH SCIENCES TO TRY AND MODEL
THIS IN CELLULAR SYSTEMS.
NEXT SLIDE PLEASE.
CREATING ANOTHER RESOURCE AROUND
GENETICS, AND DIVERSE
POPULATIONS.
NEXT SLIDE PLEASE.
THIS EFFORT RUN BY MICHAEL WARD
WITHIN NINDS WHICH I THINK IS
COMING UP WITH A CRITICAL
BIOMARKER FOR THE DIAGNOSIS AND
TRAJECTORY OF FRONTOTEMPORAL
DEMENTIA.
AGAIN, GETS TO THE IDEA OF BEING
ABLE TO SUBTYPE PATIENTS.
NEXT SLIDE PLEASE.
AND THEN A PROJECT BEING RUN BY
RICHARD EWELL OF NINDS TO CREATE
A BRAND-NEW THERAPEUTIC APPROACH
TO REMOVE A CRITICAL PROTEIN IN
ALZHEIMER'S DISEASE CALLED TAU,
A PROJECT CALLED AUTOTAC, HIGH
RISK, BUT AMAZINGLY HIGH REWARD
IF IT HAPPENS TO WORK.
THESE WERE MEANT TO GIVE AN IDEA
WHAT WE'VE BEEN DOING ON BASIC
AND EARLY TRANSLATIONAL PROGRAM,
TAKING ON THINGS HIGH RISK,
CREATING RESOURCES, DOING
LONG-TERM PROJECTS, MAKING SURE
THAT THE RESEARCH ENDEAVOR IS
DIVERSIFIED, BRINGING IN NEW
TALENT, COLLABORATING WITH LOTS
OF PEOPLE, SHARING DATA.
WE'VE COME A LONG WAY, ONLY BEEN
OPEN A YEAR OR SO.
WE'RE NOW AT THE STAGE WE'RE
MAKING TRACTION ON CLINICAL AND
TRANSLATIONAL RESEARCH PROGRAM.
MANY OF THE FACETS AND
PHILOSOPHY OF THE BASIC PROGRAM
WILL CARRY OVER TO CLINICAL AND
TRANSLATION RESEARCH PROGRAM.
I HOPE THESE WILL NOT BE AS
SEPARATE AS THEY APPEAR ON THIS
DIAGRAM.
NEXT SLIDE PLEASE.
SO, OUR BROAD VISION AND THE
VISION WILL CHANGE AS WE
IDENTIFY SOMEONE TO COME ON AND
LEAD THIS PROGRAM IS AROUND
THESE FOUR ANCHORS OF RESEARCH
WITHIN CARD.
THEY ALL LEAD US TOWARDS THE
RIGHT PATIENT, THE RIGHT
THERAPY, TO GET THE RIGHT TIME.
THIS IDEA OF PRECISION.
EVERYTHING WE'RE GOING REALLY
CULMINATES IN THE CLINICAL
RESEARCH ENDEAVOR WE'RE TRYING
TO CREATE.
NEXT SLIDE PLEASE.
SO, OUR INTENTION IS TO REALLY
INVEST HEAVILY IN PRECISION
THERAPEUTICS.
THERE ARE GREAT TARGETS OUT
THERE.
NIH HAS A STORIED HISTORY IN
GENETICS-BASED THERAPEUTICS.
THERE'S NEAT TECHNOLOGIES,
ASOs, CRISPR, ENJOYING EARLY
SUCCESS IN NEURODEGENERATIVE
DISEASES.
AND AGAIN COMING BACK TO THIS
IDEA OF ADVANTAGES OF INTRAMURAL
RESEARCH PROGRAM, NUMBER ONE
ADVANTAGE, THE CLINICAL CENTER
WHERE PEOPLE COME FROM ALL OVER
THE WORLD TO WORK WITH EXPERTS
IN THIS SPACE.
WE HAVE A SPACE WHERE WE CAN
BRING PATIENTS IN, WE HAVE GREAT
CLINICAL AND HOSPITAL
INFRASTRUCTURE, THERE'S ALREADY
EXISTING INFRASTRUCTURE WITH
NINDS.
WE HAVE A LOT OF HISTORY AND
EXPERIENCE IN GENOMIC MEDICINE.
AND WE HAVE RESOURCES AVAILABLE
TO REALLY MOVE QUICKLY HERE SO
WE CAN BE QUICK AND WE CAN BE
EQUITABLE.
AS I SHOWED ON THE PREVIOUS
SLIDE, ALL OF THIS LINKS, THIS
IS REALLY THE CULMINATION OF ALL
OF THE OTHER PARTS OF OUR
PROCESS WITHIN CARD.
NEXT SLIDE PLEASE.
SO THESE ARE THE THREE MAIN ARMS
OF WHAT WE'RE DOING, WHAT WE'RE
PLANNING ON DOING.
NATURAL HISTORY WORK,
TRANSLATIONAL WORK, TRIAL WORK.
I'LL GO INTO THESE IN A LITTLE
BIT MORE DETAIL ON THE NEXT
SLIDE.
NATURAL HISTORY WORK IS AROUND
DEEP PHENOTYPING OF ALZHEIMER'S
DISEASE AND ADRD-RELATED
PATIENTS.
BRINGING NEW PATIENTS, STUDYING
LONGITUDINALLY, THOSE WITH
SINGLE GENETIC DRIVER BUT MORE
TYPICAL DISEASE PATIENTS WHO
CARRY -- ARE MORE COMPLEX IN
NATURE.
WE'LL WORK WITH EXISTING EFFORTS
WITHIN THE INTRAMURAL PROGRAM
BUT ALSO OUTSIDE, AND
CHARACTERIZATION YOU WOULD
EXPECT, HISTORIES AND PHYSICALS,
NEUROPSYCH IMAGING, GENETICS,
BIOMARKER WORK.
NEXT SLIDE PLEASE.
TRANSLATIONAL OF COURSE I TALKED
ABOUT THIS ALREADY, DEVELOPING
AND DE-RISKING THERAPEUTICS.
SO LOOKING AT TARGET CAUSALITY,
TARGET ENGAGEMENT, DE-RISKING
THERAPIES BY USING iPSCs,
TRANSPLANTATION EFFORTS,
TOXICOLOGY, WE ALREADY HAVE A
GREAT BIOMARKER PROGRAM IN CARD
SO TIEING THAT WITH CLINICAL
PROGRAM WILL BE ABSOLUTELY KEY.
AGAIN, MUCH OF THIS WE MIGHT
OUTSOURCE.
AND LASTLY THE ULTIMATE ON THE
NEXT SLIDE IS OF COURSE EXECUTE
PRECISION THERAPEUTIC TRIALS
WITHIN THE CLINICAL CENTER.
SO TAKE THESE PATIENTS WE
RECRUITED, REGIONALLY,
NATIONALLY, SOMETIMES
INTERNATIONALLY FOR THE
PARTICULARLY RARE GENETIC FORMS,
START WITH WELL-DEFINED GENES
AND MECHANISMS AND THEN MOVE TO
MUCH, MUCH MORE COMPLEX
MECHANISMS AS WE BEGIN TO
UNDERSTAND THEM FROM THE BASIC
SIDE.
THERE ARE SOME TARGETS NOW READY
TO ROLL TO BE HONEST, SO I THINK
WE CAN REALLY GET A GREAT HEAD
START ON THIS.
NEXT SLIDE PLEASE.
WE'LL ALSO HAVE CHALLENGE
PROJECTS, THREE IDEAS THAT HAVE
COME IN.
I'VE TALKED ABOUT ONE,
UNDERSTANDING VARIANTS OF
UNKNOWN SIGNIFICANCE IN THE
MIDDLE.
THE OTHER IS DEVELOPING
CRISPR-BASED THERAPEUTICS AND
THEN WORKING WITH GROUPS IN THE
SPACE OF WEARABLES AND DIGITAL
HEALTH.
SO PASSIVE DATA COLLECTION.
WHAT CAN YOU GET FROM
INDIVIDUALS 24 HOURS A DAY, 7
DAYS A WEEK, USING WEARABLES OR
SENSING TECHNOLOGIES.
NEXT SLIDE PLEASE.
SO THIS FITS IN AGAIN THE IDEA
THAT THE BASIC AND CLINICALS ARE
ESSENTIALLY SEAMLESS, FITTING
REALLY WELL WITH EFFORTS WE'VE
GOT ONGOING, THIS iPSC
PROGRAM, FUNCTIONAL GENOMICS
EFFORTS TO UNDER MOLECULAR
BASIS, EFFORTS TO DEVELOP
BIOMARKERS, TDP43 PROGRAM, DATA
SCIENCE, THE GLUE THAT TIES US
TOGETHER.
WE ALL PRODUCE TONS OF DATA.
I EXACT THE SAME TO BE TRUE ON
CLINICAL SIDE, INCREDIBLE DATA
SCIENTISTS WHO TIE EVERY PROJECT
TOGETHER AND THEN UNDERLYING
CULTURE OF BEING COLLABORATIVE,
RIGOROUS, BEING TRANSPARENT.
REALLY THE ULTIMATE AIM HERE IS
FOR US TO MAKE -- BUILD A CLINIC
THAT'S THE DESTINATION MEDICAL
CENTER FOR PRECISION TRIALS AND
ALZHEIMER'S DISEASE AND ADRDs.
NEXT SLIDE PLEASE.
WE'VE BEEN WORKING WITH THE
CLINICAL CENTER FOR QUITE A TIME
NOW TO TRY TO IDENTIFY SPACE,
INCREDIBLY HELPFUL, I THINK WE
HAVE NOW ABOUT 9,000 SQUARE FEET
OF SPACE THAT WE CAN USE FOR THE
CARD CLINIC, WE ALREADY HAVE A
SPACE SUBDIVIDED OUT IN
COLLABORATION WITH NEI WHICH
SHOWS THIS IDEA OF COLLABORATIVE
SPIRIT, IT WILL BE FAIRLY BASIC,
GENERIC SPACE, SO AGAIN WE HAVE
THAT FLEXIBILITY I TALKED ABOUT
HOW WE CAN CHANGE THE LAB ON A
WHIM.
WE SHOULD BE ALSO ABLE TO ALTER
WHAT WE DO HERE FAIRLY EASILY SO
FAIRLY BASIC EXAM ROOMS,
PROCEDURE ROOMS FOR LPs,
THINGS LIKE THAT, CONFERENCE
ROOMS, OFFICES.
SO SPACE IS ONE THING THAT I
THINK WE HAVE GOOD TRACTION ON.
THE NEXT PIECE ON THE NEXT SLIDE
IS IDENTIFYING A LEADER.
SO, THE SEARCH IS ABOUT TO
RESTART FOR A LEADER, DIRECTOR
OF CLINICAL/TRANSLATIONAL
PROGRAM.
WE HAD AN EARLIER SEARCH BUT
DECIDED UNTIL WE SQUARED AWAY
SPACE AND RESOURCES IT WASN'T
FEASIBLE TO CONTINUE.
WE'VE DONE THAT AND FEEL
COMFORTABLE MOVING FORWARD
LOOKING FOR A DIRECTOR.
THIS HAS TO BE SOMEONE WITH A
TRACK RECORD IN AD/ADRD SPACE.
I THINK REALLY AS IMPORTANT AS
THAT IS SOMEONE THAT REALLY
UNDERSTANDS THE POTENTIAL OF HOW
SPECIAL THE IRP IS, AND JUST
WHAT THE POTENTIAL IS TO DO
THINGS HERE THAT'S DIFFERENT TO
THE OUTSIDE WORLD NOT TO COMPETE
WITH THEM BUT TO COMPLEMENT THAT
WORK.
LASTLY SOMEONE WHO CAN REALLY
COME UP WITH A VISION AND HAS
THE SKILLS NECESSARY TO
IMPLEMENT AND EXECUTE THAT
VISION.
WE'VE BUILT THIS BASIC PROGRAM.
WE'RE CONTINUING TO RECRUIT, 19
WORKING, ANOTHER 40 OR 50 TO
RECRUIT, A COUPLE YEARS BEHIND
THE CLINICAL PROGRAM BUT I'M
GRATEFUL FOR THE SUPPORT WE'VE
GOTTEN FROM THE CLINICAL CENTER
SO FAR AND EXCITED ABOUT THIS
PATH.
I WILL END THERE AND BE HAPPY TO
TAKE QUESTIONS.
>> THANK YOU.
ABSOLUTELY FASCINATING.
YOUR STRUCTURAL METHODOLOGY IS
VERY MUCH ARPA-H-ISH, IT SOUNDS,
CREATING NETWORKS.
WHILE OUTCOMES AND DELIVERABLES
IS PRE-VISION IS -- PRECISION
AND SPEED, HOW DO YOU SHARE THE
SAME LEVEL OF URGENCY AND SPEED
TO GET TO THESE OUTCOMES?
>> YEAH, THERE'S CERTAINLY A
SENSE OF URGENCY.
I THINK ONE OF THE PIECES OF
ADVICE WE WERE GIVEN REALLY
EARLY ON WAS GET SOME QUICK
WINS, AND I REALLY RESISTED THAT
PIECE OF ADVICE.
I STILL TRY AND RESIST THAT
PIECE OF ADVICE, TO BE HONEST,
BECAUSE I WOULD RATHER BUILD
SOMETHING SUBSTANNIVE AND
SUCCESSFUL RATHER THAN GRAB A
QUICK VICTORY ANYBODY ELSE COULD
HAVE DONE.
WE HAVE SPEED AND URGENCY BUT
FOCUS ON PATH AND MISSION TO
ACHIEVE THAT.
EVERY PRESENTATION IN CARD
STARTS WITH HOW DOES THIS FIT
OUR MISSION, HOW DOES THIS FIT
THE GENERAL MISSION OF NIA AND
ADRD MILESTONES, WHY SHOULD WE
BE DOING IT HERE, CAN ANYONE
ELSE DO IT BETTER THAN US?
I THINK THAT HELPS KEEP US
FOCUSED.
>> THANK YOU.
ANY QUESTIONS?
CAN WE SEE THE -- IF ANYONE IN
ZOOMLAND HAS QUESTIONS?
ALL RIGHT.
>> AT THE RISK OF ECHOING WHAT
YOU SAID, I WOULD SAY HASHTAG
#HURRY UP.
>> YEAH, YEAH.
WE'RE NOT -- YEAH, WE'RE
DEFINITELY TRYING.
WE'RE DEFINITELY TRYING.
>> THANK YOU VERY MUCH.
FABULOUS, WISH YOU THE BEST OF
LUCK.
>> THANK YOU SO MUCH.
>> AND LOOK FORWARD TO UPDATES
IN A FUTURE MEETING.
OKAY.
WE HAVE A FEW MINUTES.
ANY QUESTIONS OR DISCUSSION,
ANYTHING?
NEW BUSINESS ANYONE WANTS TO
BRING UP BEFORE THE BOARD?
IF NOT, LET ME GIVE YOU CLOSING
REMARKS.
THIS IS A GREAT MEETING, LOTS OF
EXCITING STUFF THAT'S GOING ON,
LOTS OF GREAT UPDATES.
THANK YOU VERY MUCH AND THANKS
TO ALL THE PRESENTERS AND
EVERYBODY WHO HAS BEEN HERE
TODAY FOR THIS.
WE APPRECIATE IT.
OUR 2024 MEETING DATES, YOU
SHOULD HAVE THEM ON YOUR
CALENDARS ALREADY, FEBRUARY 16,
JUNE 21, OCTOBER 18.
SO, IT IS FALL.
WINTER IS ON THE WAY.
CHRISTMAS HOLIDAYS AND NEW
YEAR'S WILL BE HERE BEFORE WE
MET AGAIN.
WE LOOK FORWARD TO SEEING
EVERYONE IN FEBRUARY. THERE IS
NO OTHER DISCUSSION, THEN THIS
MEETING STANDS ADJOURNED.
THANK YOU ALL VERY MUCH AND GOD
BLESS EVERYONE.
[END OF PROGRAM]