GOOD MORNING EVERYONE, THIS
IS KELVIN CHOI, DIRECTOR OF
THE DIVISION OF.
[INDISCERNIBLE]
WELCOME TO THE SEMINAR
NOVEMBER EDITION HOPE YOU HAD
AN ENJOYABLE HALLOWEEN AND
ALSO HAPPY VETERAN DAYS.
TODAY WE THE COLLEGE OF
PUBLIC HEALTH AT THE
UNIVERSITY OF NEBRASKA CENTER.
HER DYNAMICS
AND SHARING DYNAMICS OF THE
INSTITUTE WHERE SHE WAS
WORKING BEFORE.
SHE CONDUCTED THE ANALYSIS OF
METROS IN THE TRANSITIVE CARE
PORTFOLIO AND ALSO FOR THE NCI
LEVEL INTERVENTION TRAINING.
SHE IS GOING TO TALK TO US ON
CARE CONDITIONS AND THANK YOU
AND WELCOME, THE STAGE IS
YOURS.
>> GREAT, THANK YOU SO MUCH.
>> THANK YOU SO MUCH FOR
HAVING ME HERE TODAY.
'EM REALLY EXCITED TO SHARE MY
RESEARCH ON CARE COORDINATION
AND TEAM EFFECTIVENESS FOR
PATIENTS WITH
MULTIMORBIDITIES.
SO FOR THE BEGINNING I WOULD
JUST LIKE TO ACKNOWLEDGE THAT
THIS WAS SUPPORTED BY NIHMD
VIA THE WILLIAM G COLEMAN
MINORITY HEALTH AND HEALTH
DISPARITIES RESEARCH
INNOVATION AWARD AND LIKE TO
SAY THE CONTENT IS SOLELY THE
RESPONSIBILITY OF ME AND MY
COWORKERS AND DON'T
NECESSARILY REPRESENT THE WORK
OF THE NIH.
SO NOW LET'S GO AHEAD AND JUMP
INTO THE RESEARCH.
THIS IS THE CHRONIC HEALTH
BURDEN WITH IMPACT TO
MORTALITY.
CANCER IS THE SECOND MOST
PREVALENT CHRONIC CONDITION IN
THE UNITED STATES AND ONE OUT
OF THREE PEOPLE WILL HAVE
CANCER IN THEIR LIFETIME.
IT IS ALSO THE SECOND LEADING
CAUSE OF MORTALITY IN THE U.S.
AND NEARLY 60 PERCENT OF THOSE
DIAGNOSED WITH CANCER WILL
HAVE MULTIPLE 'CHRONIC MORE
BIT TEASE AND THE MOST COMMON
OF THESE INCLUDE
CARDIOVASCULAR DISEASE,
DIABETES, DEPRESSION AND
ARTHRITIS.
SO THE PREVALENCE OF
MULTIMORBIDITY IS ALSO RISING
AMONG CANCER PATIENTS AND
DISPROPORTIONATELY IMPACTS
THOSE LIVING WITH HIGH LEVELS
OF DEPRIVATION OR
COMORBIDITIES.
THE STUDY REPORTED THAT THE
DIAGNOSIS OCCURS AMONG BLACK
AND YOUNGER CANCER SURVIVORS
AND RATES OF MORBIDITY ARE
ASSOCIATED WITH POOR HEALTH.
THE CANCER DIAGNOSIS AND
MULTIMORBIDY CAN HAVE IMPACT
ON TREATMENT DECISIONS AND
OUTCOMES ON THE CHRONIC
CONDITION MANAGEMENT.
IN TERMS OF CANCER, CANCERS
ARE REALLY COMPLEX DISEASE AND
REQUIRE DIFFERENT CARE TEAMS
TO DIAGNOSE.
THE RESPONSIBILITY OF THE
DIFFERENT PROVIDERS SHIFTS
ACROSS THIS PATHWAY FROM
SYMPTOM DETECTION TO DIAGNOSIS
TREATMENT.
THE DIFFERENT PROVIDERS HAVE
TO COORDINATE THEIR ACTIONS
ACROSS CARE CONTINUUM TO
ENSURE PATIENTS RECEIVE TIMELY
CARE.
THE PATIENTS WITH CHRONIC
CONDITIONS AT THE TIME OF
THEIR DIAGNOSIS ADD A LAYER OF
COMPLEXITY.
SO PATIENTS WITH DIABETES
DURING THEIR DIAGNOSIS MIGHT
HAVE AN ENDOCRINOLOGIST HELP
MANAGE THEIR CONDITION AND
DIETICIAN FOR DIETARY NEEDS.
THEY COORDINATE ACROSS
DIFFERENT MEDICAL SPECIALTIES
TO ENSURE THAT THE TREATMENTS
DON'T ADVERSELY IMPACT THE
DISEASE MANAGEMENT AND HAVE TO
WORK CLOSELY TO MANAGE COMPLEX
MEDICATION REGIMENS.
UNFORTUNATELY THIS ISN'T
ALWAYS THE CASE SO PATIENTS
ARE MORE LIKELY TO HAVE LATER
STAGE DIAGNOSIS, FACE
TREATMENT DELAYS OR POOR
HEALTH OUTCOMES.
THE TREATMENT OR GUIDELINE
CONCORDANT CARE AND MANAGEMENT
OF CHRONIC CONDITIONS.
SO CARE COORDINATION OFFERS
ONE WAY TO MITIGATE THE HEALTH
DISPARITIES AND POOR HEALTH
OUTCOMES ASSOCIATED WITH
COMORBIDITY WITH CANCER.
TO TAKE THE BURDEN OF CARE
COORDINATION, IT IS IMPORTANT
FOR PROVIDERS TO WORK AS A
COLLABORATIVE
MULTIDISCIPLINARY TEAM OR
TEAMS OR MULTICARE TEAMS AND
VARIOUS CLINICAL DISCIPLINES.
THE STRATEGIES REALLY REMAIN
UNKNOWN.
FOR EXAMPLE, ONCE A PATIENT IS
DIAGNOSED WITH CANCER, WHO IS
MANAGING THE CHRONIC
CONDITION?
IS IT THE PRIMARY CARE TEAM OR
MEDICAL SPECIALIST OR
ENDOCRINOLOGIST?
OR IS THE ENCOLLING TEAM
MANAGING BY DEFAULT?
THE DIFFERENT DISCIPLINE
DIVERSITY AND MULTITEAM SYSTEM
SIZE CAN CONTRIBUTE TO THE
MULTITEAM SYSTEM COMPLEXITY.
THE TEAM SIZE INCREASES OR
THERE ARE DIFFERENT
DISCIPLINES INVOLVED IN THE
TEAM, THE COMPLEXITY TENDS TO
INCREASE IN COMPARES TON SO
TEAMS LOCATED WITH FEWER
DISCIPLINES AND MEMBERS.
WE DON'T REALLY KNOW HOW
DIFFERENT ASPECTS OF THE
MULTITEAM STRUCTURE SIZE AND
COMPLEXITY IMPACT THE TEAM
WORK PROCESS.
SO THE AIMS OF THIS STUDY WERE
TO ADDRESS THIS GAP AND
EXAMINE HOW STRUCTURES IN THE
MULTITEAM SYSTEM THAT IS TEAM
COMPLEXY AND HOW THEY IMPACT
CARE COORDINATION CHALLENGES
AND EXPERIENCED BY CANCER
PATIENTS IN THE 12 MONTHS
FOLLOWING THEIR CANCER
DIAGNOSIS.
THIS WORK WAS GUIDED BY A
FRAMEWORK I DEVELOPED WHILE
WORKING AS A POST DOC AT THE
NATIONAL CANCER INSTITUTE THAT
DIFFERENTIATED THE TEAM WORK
PROCESSES FROM SOME OF THE
TASK WORK ASPECTS OF CANCER
CARE DELIVERY AND OUTLINED
SEVERAL DIFFERENT INPUTS LIKE
THE TEAM GEOGRAPHIC DISPERSION
OF THE TEAM AND HOW IT CAN
IMPACT THE TEAM TOGETHER OR
PROCESSES.
TO ANSWER THESE QUESTIONS, WE
CONDUCTED A METHOD STUDY USING
EXPLANATORY SEQUENTIAL DESIGN.
SO THIS TOOK THE PHASES WHERE
WE FIRST ADMINISTERED THE
QUESTIONS AND USING A PARALLEL
QUESTION THAT WERE MATCHED TO
THE QUANTITATIVE DATA AND
AFTER WE COLLECTED AND CODED
THE DATA WE MERGED THE
QUANTITATIVE AND QUALITATIVE
FINDINGS BY BRINGING THEM
TOGETHER IN OUR ANALYSIS.
OUR POPULATION INCLUDED CANCER
SURVIVORS WITH AT LEAST ONE
CHRONIC CONDITION AT THE TIME
OF THEIR DIAGNOSIS AND ALL
STUDY PROTOCOLS WERE APPROVED
UNDER IRB EXEMPTION AT NIH.
TO RECRUIT PARTICIPANTS WHO
USE TWO ONLINE CROWD SOURCING
BETWEEN APRIL AND
NOVEMBER 2022 TO FACILITATE
PARTICIPANT RECRUITMENT.
SO THE TWO PLATFORMS WERE USED
AND IN LINE WITH EACH OF THE
SURVEY PLATFORMS AND
INTERVIEWEES WERE COMPENSATED
$50.
AND IF YOU ARE WONDERING WHY
WE USED TWO SURVEY PLATFORMS,
WE WILL TALK A LITTLE BIT
ABOUT THIS AT THE END WITH
LESSONS LEARNED BUT ABOUT FOUR
MONTHS OF RECRUITMENT VIA
PROLIFIC, WE ONLY RECRUITED
ABOUT 120 PARTICIPANTS AND
NEEDED A LARGER SEAM FOR
ANALYSIS SO SWITCHED OVER TO
CROWD RESEARCH AND USED THEIR
MANAGE RESEARCH OPTION.
OUR PRIMARY PREDICTOR FOR THIS
STUDY WAS TEAM COMPLEXITY WITH
CLASSIFICATIONS OF MULTITEAM
SYSTEMS TO CALCULATE THE
CONDITIONS.
SO HERE WE HAVE LOWER
COMPLEXITY WITH ONE TO THREE
PROVIDERS, MODERATE COMPLEXITY
WITH FOUR PROVIDERS IN THE
SAME HEALTH SYSTEM AND THEN
HIGHER COMPLEXITY WITH MORE
THAN FOUR DIFFERENT PROVIDERS
FROM DIFFERENT HEALTH SYSTEMS.
OUR PRIMARY OUTCOME WAS
PERCEIVED TEAM EFFECTIVENESS.
WE REALLY WANTED TO CAPTURE
TEAM PROCESSES OF THE
PROVIDERS AFTER AND AFTER
REVIEWING THE LITERATURE, WE
THOSE KILPATRICK'S OUTCOMES OF
CARE.
THE PERCEIVED TEAM
EFFECTIVENESS CAPTURED 8
DIFFERENT PROCESSES AND THE
REASON WE WANTED TO MEASURE
THIS IS BECAUSE CARE
COORDINATION AND TEAM WORK
ISN'T JUST ONE ASPECT.
THERE'S LOTS OF DIFFERENT
DIMENSIONS THAT GO INTO
COORDINATING CARE.
SO THAT IS WHY WE CHOSE THIS
SPECIFIC MEASURE.
ALL OF THESE WERE RATED ON ONE
TO SEVEN WITH AGREE AND
STRONGLY AGREE AND OUTCOMES OF
CARE EVAL THINGS LIKE
TIMELINESS OF CARE AND WHETHER
PATIENTS' QUESTIONS WERE BEING
ANSWERED.
THE STATISTICAL ANALYSIS
INCLUDED DESCRIPTIVE
STOPPIVITY TICKS OF THE
PATIENT, CHARACTERISTICS, TEAM
COMPOSITION, COMPLEXITY AND
CARE CHALLENGES AND THEN TESTS
TO EXAMINE HOW TEAM PROCESSES
DIFFERED FOR HIGHER LOW
COMPLEXITY TEAMS.
SO FOR THE QUALITATIVE
METHODS, WE USED ANALYTIC
METHODS WITH CONSTANT
COMPARATIVE METHOD AND AUDIO
RECORDED AND TRANSCRIBED
UPLOADED BY Dr. MICHELLE
JU'S DEVELOPED CODE AND THIS
IS AN ITERATIVE APPROACH AND
THEN THE PRIMARY THEMES THAT I
CAN TALK ABOUT IF PEOPLE WANT
ADDITIONAL CONTEXT RELATED TO
THE DIFFERENT CRITERIA HERE.
SO IN TERMS OF OUR RESULTS ON
A TOTAL OF 441 CANCER
SURVIVORS COMPLETED THE
SURVEY, SURVEY RESPONDENTS
WERE PREDOMINANTLY FEMALE,
NONE HISPANIC WHITE AND
13 PERCENT SELF IDENTIFIED AS
ASEXUAL OR GENDER MINORITY AND
INDIVIDUALS THAT IDENTIFIED
WERE CLASSIFIED AS SEXUAL
ORIGIN.
16PERCENT OF OUR POPULATION
WERE FROM RURAL AREAS AND MOST
WERE PRIVATELY INSURED,
28 PERCENT FINDING IT
DIFFICULT TO GET BY.
THE MOST PREVALENT CANCER WAS
BREAST, SKIN, GYNECOLOGICAL OR
ENDOCRINE THYROID.
MOST WERE DIAGNOSED AT AN
EARLY STAGE, STAGES 1 THROUGH
3 AND THE MOST COMMON
COMORBIDITIES INCLUDED
CONFERENCE, HYPERTENSION,
ARTHRITIS, OVER 67 PERCENT OF
OUR SAMPLE HAD
MULTICOMORBIDITIES AND OTHER
CANCERS.
ONE-THIRD OF OUR SAMPLE WAS
DIAGNOSED LESS THAN TWO YEARS
AGO AND MOST UNDERWENT
TREATMENT LESS THAN TWO YEARS
AGO OR OVER FIVE YEARS AGO.
ON AVERAGE, PEOPLE RECEIVED
BETWEEN TWO TO THREE DIFFERENT
TREATMENTS AND SURGERY WAS THE
MOST PREVALENT FOLLOWED BY
THEME THERAPY AND RADIATION.
AND IN TERMS OF TEAM
COMPOSITION, THE AVERAGE
NUMBER OF PROVIDERS SEEN WAS
4.5 SO PEOPLE TENDED TO SEE
BETWEEN FOUR AND FIVE
DIFFERENT CLINICIANS.
ONCOLOGY PROVIDERS, PEOPLE SAW
BETWEEN ONE OR TWO DIFFERENT
ONCOLOGY PROVIDERS AND IN
TERMS OF UNIQUE COMORBIDITIES,
ONCOLOGY PROVIDERS AND OTHER
MEDICAL SPECIALISTS A PATIENT
MIGHT SEE, PATIENTS TENDED TO
SEE BETWEEN FOUR -- THREE AND
FOUR HIGH-TEAM COMPLEXITIES.
IN TERMS OF TEAM COMPLEXITY,
MOST PARTICIPANTS HAD MODERATE
TO LOW COMPLEXITY SO
49 PERCENT FOLLOWED BY LOW
TEAM COMPLEXITY.
THE ANALYSIS ILLUSTRATES THE
HIGH TEAM COMPLEXITY WITH
LOWER SAMPLES AND THE ANALYSIS
WASN'T POWERED TO DO THE
ADDITIONAL RESEARCH QUESTIONS
RELATED TO THOSE DIFFERENT
SOCIODEMOGRAPHIC VARIABLES.
THE RESPONSE ITEMS HERE WERE
RECODED.
SO ITEMS 1 THROUGH 5 WERE
RECATEGORIZED AS LOW
FUNCTIONING TEAMS, RESPONSES 6
AND 7 WERE CATEGORIZED AS HIGH
FUNCTIONING TEAMS AND OVERALL
81 PERCENT OF PARTICIPANTS
RELATED THEIR PERCEIVED
TESTIMONY EFFECTIVENESS SCORE
WAS 6.
HERE I HAVE HIGHLIGHTED A FEW
OF THE LOWEST RATED TEAM
PROCESSES INCLUDING
COMMUNICATION, PROBLEM-SOLVING
ABILITIES OF THE TEAM AND
PATIENT FAMILY FOCUS OF THE
TEAM.
THERE WAS AN INVERSE
RELATIONSHIP FOUND BETWEEN PTE
OVERALL AND TEAM COMPLEXITY SO
AS TEAM COMPLEXITY INCREASED,
THE PERCEIVED EFFECTIVENESS
OVERALL DECREASED.
HIGH TEAM COMPLEXITY WAS ALSO
RELATED TO DECREASED PROBLEM
SOLVING AND DECREASED PATIENT
FAMILY FOCUS HOWEVER THERE WAS
NO ASSOCIATIONS FOUND BETWEEN
THE COMPLEXITY OF THE TEAM AND
OTHER TEAM PROCESSES.
WHEN LOOKING AT THE DIFFERENT
TEAM PROCESSES, WE FOCUSED ON
THEMES THAT EMERGE FROM BOTH
THE SURVEYS AND INTERVIEW
RESPONDENS SO THIS INCLUDED
THINGS LIKE COORDINATION,
SHARED MENTAL MODELS, PATIENT
FAMILY FOCUS AND I AM GOING TO
DIVE INTO SOME OF THOSE NOW.
SO COORDINATION WAS MOST
POSITIVELY VIEWED TEAM PROCESS
WITH 85 PERCENT OF
PARTICIPANTS RATING IT AS HIGH
AND 78 PERCENT RATING THEIR
CARE AS BEING WELL ORGANIZED.
THE CARE COORDINATION PLAN WAS
REVIEWED AHEAD OF TIME AND IF
THEY WERE ALIGNED WITH WHAT
THE PROVIDERS TREATMENT CARE
PLANS WERE.
AND ALSO THE PATIENTS HAD THE
SAME INSURANCE NETWORK AND
FINALLY PARTICIPANTS HAVING A
"QUARTERBACK Q ON THE TEAM
MAKING SURE EVERYONE IS ON THE
SAME PAGE AND HAS A SHARED
UNDERSTANDING OF WHAT IS GOING
ON.
IN TERMS OF BARRIERS TO
COORDINATION, THE PREDOMINANT
THEMES INCLUDED HAVING
SEQUENTIAL REFERRALS WITH NO
INTEGRATION SO BOUNCED AROUND
BETWEEN DIFFERENT PROVIDERS
BUT NOT HAVING THAT INTEGRATED
CARE PLAN GIVEN TO THEM.
SOME PATIENTS REPORTED THEY
DIDN'T HAVE A CARE PLAN.
DURING THE INTERVIEWS, WE
ASKED WHAT THEIR TREATMENT
PLAN LOOKED LIKE AND SOME
PEOPLE REPORTED THAT THEY
DIDN'T KNOW HOW TO ANSWER THAT
BECAUSE THEY DIDN'T HAVE A
CLEAR TREATMENT PLAN, THEY
WENT TO DIFFERENT APPOINTMENTS
THEY WERE REFERRED TO AND
DIDN'T HAVE A KIND OF
INTEGRATION ACROSS THOSE
DIFFERENT CARE PROVIDERS.
THE LARGEST BARRIER WAS
COORDINATION AND I PULLED THIS
QUOTE FROM ONE OF THE
RESPONDENTS WHO SAID ONCE YOU
HAVE CANCER, YOU THOUGHT
EVERYTHING WOULD STOP AND
DOCTORS WOULD JUMP RIGHT ON IT
AND THAT WASN'T THE CASE.
THEY WERE GOING TO HAVE TO
FIGHT FOR THEIR APPOINTMENTS
TO FIND DOCTORS ON THEIR OWN
AND ACTUALLY FIND DOCTORS THAT
HAD THE SAME VISION FOR THEIR
CARE THAT I DID.
IN TERMS OF COMMUNICATION,
69 PERCENT RATED COMMUNICATION
HIGH AND INCLUDED THINGS LIKE
SHARED ELECTRONIC HEALTH
RECORDS AND CLOSED LOOP
COMMUNICATION.
IT WAS INTERESTING THAT
SEVERAL PARTICIPANTS NOTED IN
TERMS OF EHR THEY COULD SEE
THE DIFFERENT SCANS OR IF
THEIR DOCTORS WERE TALKING
BACK AND FORTH, IT SERVED AS
LIKE THIS DIGITAL TRACE OF
COMMUNICATION ACROSS THE
DIFFERENT PROVIDERS AND IN
TERMS OF CLOSED LOOP
COMMUNICATION PATIENTS FELT
LIKE WHEN THEY WEPT TO THEIR
PRIMARY CARE DOCTOR, THEY SAID
I SAW YOUR ONCOLOGIST DID XYZ
AND THIS COMMUNICATION WAS
OCCURRING ACROSS DIFFERENT
CARE AND BARRIERS IN TERMS OF
THE PATIENT.
IN TERMS OF THE PATIENT HAVING
TO COMMUNICATE FOR THE TEAM,
ASKING THEM TO SHARE
INFORMATION, ASK QUESTIONS
REPEATING STUFF OVER AND OVER
AND SOME FELT THEY DIDN'T
THINK THE TEAM EVER TALKED.
FOR SHARED MENTAL MODERATE
KELS, 78 PERCENT RATED THEIR
SHARED DECISION MAKING OF THE
TEAM HIGH AND ONLY 49 PERCENT
RATED PROBLEM SOLVING
ABILITIES OF THE TEAM AS HIGH.
SOME FACILITATORS REPORTED
THINGS AS HAVING THE SAME GOAL
TO GET THE PATIENT HEALTHY, SO
THE PROVIDERS UNDERSTANDING OF
YES, WE ARE ALL WORKING
TOGETHER ON THE SAME GOAL TO
GET THE PATIENT HEALTHY AND
KIND OF CHECKED THEIR HEGO AT
THE DOOR TO WORK TOGETHER,
COMING FROM DIFFERENT
EXPERTISE AND DIFFERENT
CONDITIONS AND SOME PATIENTS
ON DIFFERENT TREATMENTS MIGHT
NOT UNDERSTAND HOW THAT COULD
IMPACT CANCER CARE AND VICE
VERSE IS A AND REPORTED
SOMETHING DOCTORS WORK
TOGETHER ACROSS THOSE
BOUNDARIES, PUTTING THEIR EGO
ASIDE WAS HELPFUL AND FINALLY
HAVING A MULTIDISCIPLINARY
CLINICAL STRUCTURE AND SHARED
MENTAL MODEL.
WHEN YOU COME INTO THE CLINIC,
YOU ARE DIAGNOSED WITH CANCER,
THEY HAVE IT SET WHERE YOU SEE
ALL YOUR DIFFERENT PROVIDERS
THE SAME DAY.
SO YOU MIGHT SEE YOUR SURGEON,
RADIATION ONCOLOGIST ALL THE
SAME DAY TO AVOID HAVING TO GO
BACK AND FORTH FOR THOSE
APPOINTMENTS AND FACILITATES
SHARED TREATMENT PLANS ACROSS
PROVIDERS.
AND SOME OF THE BARRIERS, IT
WAS REPORTED NONE OF THE
DOCTORS WERE ON THE SAME PAGE
AND CONFLICTING OPINIONS AND
INFORMATION FROM DIFFERENT
DISCIPLINES EVEN WHEN THEY
HAVE A SHARED HEALTH SYSTEM OR
EHR.
PATIENT FAMILY FOCUS WAS THE
MOST NEGATIVELY VIEWED TEAM
PROCESS.
ONLY 54 PERCENT OF
PARTICIPANTS -- SORRY, ONLY
46 PERCENT RATED PATIENT
FAMILY FOCUS IS HIGH AND THIS
IS SAYING THAT THEY DIDN'T
REALLY FEEL LIKE THEIR CARE
TEAM FELT THE PATIENTS HAD A
ROLE TO PLAY, THEIR FAMILY
WASN'T INVOLVED IN THE CARE
DECISION AND THE CARE TEAM
DIDN'T VIEW THE PATIENT AS A
PART OF THE TEAM.
SO KIND OF LIKE YOU ARE BEING
TOLD WHAT TO DO BUT NOT BEING
INVOLVED IN THE
DECISION-MAKING PROCESS.
SO FACILITATORS ARE CREATING
MORE PATIENT FAMILY FOCUS IN
THAT SHARED DECISION MODEL
INCLUDING HAVING A TRUSTED
PATIENT Dr. RELATIONSHIP,
INCLUSION OF FAMILY AND
ENGAGING IN SHARED
DECISION-MAKING.
BARRIERS, NOT HAVING CONCERNS,
NEEDS OR PREFERENCES VALUED,
ESPECIALLY AS IT RELATES TO
FINANCES, EMPLOYMENT AND TIME.
FOR EXAMPLE, IT CAN TAKE A
WHILE TO GET CLEARED TO GO
BACK TO WORK AND ONE
INTERVIEWEE REPORTED THEY FELT
THEY WERE READY TO RETURN BUT
THEY WERE GETTING DEPRESSIONED
WAITING AT HOME TO BE RETURNED
TO THE WORKFORCE AND SOME OF
THE HEALTH OR CARE NEEDS WHEN
CARE COORDINATION MECHANISMS
OR MODALITIES WERE ABSENT.
I THINK THE TAKEAWAYS WITH
COORDINATION AND
DECISION-MAKING, ALL THE
INTERVIEWEES REPORTED YES
THINGS THAT HELPED CONTRIBUTE
TO THAT POSITIVE PERSPECTIVE
OF THEIR CARE COORDINATION BUT
HAD INTERESTING THINGS TO TALK
ABOUT THE NEGATIVE SIDES OR
BARRIERS THEY FACED AND THE
BENEFITS OF ADMINISTERING A
SURVEY BECAUSE WE WOULDN'T
HAVE GOT TEN THIS NUANCE.
IN TERMS OF IMPLICATIONS AND
NEXT STEPS, WE THINK THE STUDY
IS REALLY INTERESTING BECAUSE
IT GETS AT A YOUNGER
POPULATION OF CANCER SURVIVORS
THAN LARGE MEDICAL DATABASES
LIKE SEER MEDICARE ALLOWS.
MOST OF THE MEDICARE DATABASES
ARE AGE 65 OR OLDER.
COMPOSITION MATTERS, WHO IS
INVOLVED IN YOUR CARE AND BEST
COORDINATING IMPACTS OF
DIFFERENT OUTCOMES OF CARE AND
THEN I THINK IT REALLY
HIGHLIGHTS THE CARE DIVERSITY
IN THE PROCESS SO THE PROCESS
NEEDED AT ONE POINT IN TIME
MAY NOT BE THE SAME NEEDED AT
A LATER POINT AND CAN BE BASED
ON EMERGENT NEEDS OF THE
PATIENT.
THERE ARE SEVERAL DIFFERENT
OPPORTUNITIES HERE TO ADVANCE
THE MEASUREMENT AND RESEARCH
OF MULTITEAMS SYSTEMS AND
MULTIMORBIDITIES.
WE SEARCHED PRETTY HARD TO
FIND ADDITIONAL MEASURES OF
TEAM PROCESSES AND THEIRS WAS
THE BEST HOWEVER A LOT OF
THESE MEASURES ARE FACED WITH
THE STEALING EFFECT PROCESS,
MOST WERE SURVIVORS BUT HAVING
ADVERSE EFFECTS FROM LIMITED
CARE OR CARE COORDINATION, YOU
CAN'T COLLECT DATA ON THAT SO
FIRST WE GET THE STEALING
EVENTS WERE PATIENTS WHO
SURVIVED AND THEN JUST PATIENT
REPORTED MEASURES OF TEAM WORK
AND TEAM PROCESSES TEND TO BE
MORE POSITIVELY RATED AND SO
THAT CAN LIMIT YOUR
VARIABILITY IN TERMS OF DOING
QUANTITATIVE ANALYSIS AND
MAKING INTERPRETATIONS OF WHAT
IS GOING ON WHEN YOU ONLY USE
THE JUAN TATIVE SIDE.
SO I THOUGHT ABOUT DOING
SOMETHING LIKE A SITUATIONAL
ADJUSTMENT TEST WHERE YOU ARE
DEFINING THE DIFFERENT ACTIONS
THAT MIGHT OCCUR DURING A CARE
COORDINATION MEETING OR THAT
YOU MIGHT OBSERVE OVER YOUR
CARE COORDINATION -- OR MIGHT
OBSERVE OVER YOUR CARE PATHWAY
TO ACTUALLY ASSESS THINGS
BEING DONE RATHER THAN YOUR
PERSPECTIVE IF THEY
COMMUNICATED WELL AND IF THE
TEAM HAD FOCUSED PERCEPTIONS.
SO THAT IS WHERE I AM GOING
FROM THE MEASUREMENT SIDE AND
FROM THE RESEARCH SIDE, I AM
HOPING TO IMPLEMENT A SIMILAR
STUDY HERE AT UNIVERSITY OF
NEBRASKA MEDS SEASON SO
WORKING WITH FOLKS AT THE
SURVIVORSHIP CLINIC TO SURVEY
THEIR PATIENT REPORTED
OUTCOMES AND SEEING HOW THAT
TRANSITION PROCESS FROM END OF
CANCER TREATMENT BACK TO
PRIMARY CARE TAKES PLACE
BECAUSE THERE IS A LOT OF
DELAYS AND ISSUES WITH THAT AS
WELL.
IN TERMS OF SOME REFLECTIONS
AND OPPORTUNITIES, I MENTIONED
BEFORE THAT THERE WERE LIMITED
POWER ISSUES THAT WE HAD
RELATED TO PROLIFIC AND THEN
WE SWITCHED OVER TO CLOUD
RESEARCH.
THIS RESEARCH IS REALLY
DIFFICULT TO DO IF YOU WANT TO
OVER-SAMPLE RACIAL AND ETHNIC
MINORITIES ON THESE ONLINE
SURVEY PLATFORMS.
SO WHEN I INITIALLY DID POWER
ANALYSIS ON WHAT WAS REPORTED
TO BE AVAILABLE, IT SAID THERE
WOULD BE SUFFICIENT SAMPLE
INDIVIDUALS FOR OUR STUDY ON
PROLIFIC HOWEVER THAT WASN'T
REALLY THE CASE AND THEN WHEN
I REACHED OUT TO CLOUD
RESEARCH TO DO OUR STUDY, THEY
QUOTED ME INITIALLY ALMOST TWO
OR THREE TIMES MY BUDGET AND I
HAD TO NEGOTIATE BACK AND
FORTH SO UNFORTUNATELY WE
WEREN'T ABLE TO OVER-SAMPLE
THE RACIAL AND ETHNIC
MINORITIES DUE TO THE
FINANCIAL COSTS AFFILIATED
WITH TRYING TO RECRUIT THESE
VIA THESE PLATFORMS SO I DO
THINK THAT IS ONE, I GUESS,
CONSIDERATION IF YOU ARE
THINKING ABOUT DOING SOMETHING
SIMILAR TO THIS STUDY AND
THEN, YEAH, I THINK THOSE ARE
THE MAIN REFLECTIONS THAT I
HAVE RELATED TO BOTH THE
MEASUREMENT OF TEAM COMPLEXITY
AND THE DIFFERENT ONLINE
SURVEY PLATFORMS.
AND THEN FINALLY I WOULD LIKE
TO THANK MY COLLABORATORS,
Dr. MICHELLE DOOSE, SALLIE
WEAVER, VERONICA SHELLETT AND
JANET SANCHEZ.
>> THANK YOU, DANA.
A VERY INTERESTING
PRESENTATION IN THE WAY IS A
PROCESS WE DON'T REALLY
UNDERSTAND UNTIL YOU ARE IN
THE SYSTEM OF WORKING WITH
THESE TEAMS AND THEN YOU
REALIZE HOW COMPLICATED THINGS
ARE AND THAT SYSTEMS FROM
PERSONAL EXPERIENCE OF, YOU
KNOW, CARING FOR MY RELATIVE
UNDERGOING CANCER TREATMENT
AND ALL THE END OF LIFE
DECISIONS AND ALL THAT KIND OF
THINGS, IT IS LIKE WHO AM I
SUPPOSED TO TALK TO, WHY AM I
TALKING TO THESE PEOPLE AND I
ALWAYS FIND IT VERY CONFUSING
SO I APPRECIATE THE WORK THAT
YOU ARE DOING.
A FEW QUESTIONS I HAVE AND
THOSE FOLKS WHO ARE WATCHING
ONLINE, YOU CAN CERTAINLY
E-MAIL THE E-MAIL PROVIDED ON
THE VIDEOCAST AND ASK YOUR
QUESTION AS WELL AND I THINK
IT IS UNFORTUNATE BECAUSE THE
CHANGE IN THE SURVEY PLATFORM
YOU WEREN'T ABLE TO COLLECT
ANY SUBSTANTIAL PROPORTION OF
RACIAL MINORITIES AND
DISBANDED POPULATIONS BUT IT
SEEMS LIKE YOU HAVE SOME OF
THEM AND I AM PARTICULARLY
INTERESTED IN YOUR COMMENT,
YOU SAID YOU LOOKED AT SOME OF
THE RESPONSES AND THERE WERE
SOME DIFFERENCES IN TERMS OF
RACE, ETHNICITY AND SEXUAL
GENDER IDENTITY AND THERE MAY
OR MAY NOT BE REAL YOUR BEEN
DIFFERENCES.
CAN YOU EXPLAIN A LITTLE BIT
MORE ABOUT THAT AND DO YOU
ALSO SEE THOSE DIFFERENCES IN
THE QUALITATIVE DATA YOU HAVE
COLLECTED?
>> I WILL START WITH THE
QUALITATIVE PIECE ACTUALLY.
SO WHEN WE WERE SWITCHING
PLATFORMS, I INITIALLY WANTED
TO ALSO ONLY INTERVIEW RACIAL
AND ETHNIC MINORITIES OR
SEXUAL AND GENDER MINORITIES
AND THOSE FROM RURAL AREAS SO
USING THE NIH DEFINITION OF
THOSE DISPARITY POPULATIONS.
AND SO I INITIALLY E-MAILED
VIA PROLIFIC'S SECURE
MESSAGING SYSTEM, THOSE
INDIVIDUALS THAT DID
SELF-IDENTIFY.
HOWEVER I E-MAILED THEM
PROBABLY A FEW TIMES AND
WASN'T GETTING RESPONSES SO
THEN I AGAIN HAD TO BROADEN
THE SCOPE.
SO I THINK 83 OR SO
INDIVIDUALS INDICATED THEY
WOULD BE OPEN TO BEING
RE-CONTACTED FOR AN INTERVIEW
VIA PROLIFIC.
SO I RE-CONTACTED ALL OF THEM
AND WE TOOK THE FIRST 12 THAT
RESPONDED.
HOWEVER, WITH THAT, I THINK
MAYBE ONE OTHER PERSON HAD
RESPONDED OUT OF THOSE 89 TO
BE INTERVIEWED.
SO-- AND THERE WAS LIMITED, I
GUESS, REPRESENTATION FROM
THAT GROUP THAT DID FOLLOW UP.
THERE WERE A COUPLE BUT AGAIN
NOT ENOUGH TO DO ANYTHING OF
POWER, RIGHT?
JUST BECAUSE IT IS SUCH A
LIMITED SAMPLE AND I WOULD SAY
THAT IS THE SAME ISSUE WITH
THE DIFFERENCES BY RACE AND
ETHNICITY AND SEXUAL AND
GENDER MINORITIES.
SO WE HAD A -- THIS PAPER IS
ACTUALLY IN PRESS RIGHT NOW SO
IT WAS RECENTLY ACCEPTED AT
THE JOURNAL OF CANCER
SURVIVORSHIP AND ONE OF THE
REVIEWERS SAID THEY THOUGHT IT
WAS A REALLY GOOD OPPORTUNITY
TO EXPAND ON THE SEXUAL AND
BENDER MINORITIES OR RACIAL
AND ETHNIC MINORITIES BUT WE
DON'T HAVE THE POWER TO DELVE
INTO THAT IN A MEANINGFUL WAY.
SO I THINK WHILE WE DID FIND
DIFFERENCES FROM A STATISTICAL
STANDPOINT, THERE IS
LIMITATIONS ON WHAT WE CAN
TAKE AWAY FROM THOSE
DIFFERENCE WE DID DETECT.
>> MM-HMM, DO YOU HAVE -- SO
IT IS INTERESTING, ALSO
LISTENING TO YOUR
PRESENTATION, IT SEEMS LIKE
THERE IS LIKE TWO TALES OF THE
PATIENT EXPERIENCE.
THERE IS SOME --
>> THAT IS HOW I FEEL.
>> SOME THAT HAVE -- AND I
DON'T KNOW IF THEY ARE
DIFFERENT PEOPLE OR THEY MIGHT
BE THE SAME PERSON HAVING TWO
SEPARATE EXPERIENCE DURING THE
SAME SYSTEM AND THERE ARE SOME
THAT SEEM TO EXPERIENCE LIKE
HIGH FUNCTIONING TEAMS THAT
ARE TAKING CARE OF THEIR
TREATMENTS AND THINGS ALTHOUGH
CERTAINLY THERE ARE SOME
REPORTING THAT EVERYTHING IS
CONFUSING, THEY HAVE TO FIGHT
FOR THEMSELVES AND WHAT THEY
SEE ON LIKE TV SHOW IS NOT
HAPPENING.
AND THEN ON THE OTHER HAND,
YOU HAVE EVEN THOSE WHO HAVE
BEEN FEELING LIKE THEY HAVE
BEEN TAKEN CARE OF ON THE
TREATMENT SIDE, THE
DECISION-MAKING RESPECT IS NOT
THERE.
>> I THINK THERE IS A REALLY
INTERESTING STORY ALSO TO BE
TOLD FOR THOSE THAT HAVE THE
ABILITY TO GET SECOND
OPINIONS, RIGHT?
SO THERE WERE A COUPLE OF
PEOPLE WE INTERVIEWED THAT HAD
REALLY NEGATIVE INTERACTIONS
WITH THE CARE TEAM AND THEN
THEY WENT SOMEWHERE ELSE AND
THEN IT WAS GREAT.
SO WHEN THEY REFLECTED ON
THEIR CARE COORDINATION OR
TEAM WORK, THEY REFLECTED ON
THE POSITIVE EXPERIENCE OF THE
TEAM THEY WENT WITH BUT THOSE
ARE ONLY THE INDIVIDUALS THAT
WERE ABLE TO TAKE OFF WORK, TO
TRAVEL ELSEWHERE, TO DO AND
GET ALL THOSE SECOND OPINIONS.
SO I THINK THAT SOMETHING I
HAVE THOUGHT ABOUT IS THERE IS
WAYS TO LOOK AT, LIKE SEE YOUR
MEDICAL CARE AND THE DIFFERENT
MEDICAL APPOINTMENTS YOU HAD
BEGINNING TREATMENT, IF YOU
ARE CHANGING FACILITIES,
SOMETHING LIKE THAT BECAUSE
THAT IS LIKE AN INTERESTING
ASPECT I HAD NOT REALLY
THOUGHT ABOUT UNTIL
INTERVIEWING FOLKS.
AND YES I AGREE THERE IS
REALLY KIND OF THIS TALE OF
TWO.
THERE IS THE PEOPLE THAT GET
IT AND I THINK THERE'S A
SYSTEM AND TEAM THING SO ONE
OF MY QUESTIONS IS ARE THE
PLACES THAT HAVE REALLY
COORDINATED CARE, DO THEY
TRAIN STAFF WHEN THEY COME IN
AND SAY HERE IS THE MDC, HERE
ARE THE TREATMENT GUIDELINES,
DO WE FOLLOW THAT UP WITH
PATIENTS AND IMPLEMENT THAT
FROM THE STRUCTURAL AND
INTERPERSONAL SIDE.
BECAUSE OTHER FOLKS HAVE
REPORTED THAT, AS YOU SAID, IT
IS VERY SEQUENTIAL, THERE WAS
NO TREATMENT PLAN AND I HAVE
SEEN THAT WITHIN OUR
INSTITUTION, DIFFERENT
PROVIDERS FROM DIFFERENT
SPECIALTIES SEE THE VALUE OF
THE MULTIDISCIPLINARY CLINIC
OR DON'T.
SO WE HAVE LIKE OUR BREAST
CANCER TEAM HERE REALLY SEES
THE VALUE OF MDC.
THEY BRING ALL THEIR PATIENTS
IN TO IT, THEY TAKE PLACE IN
SHARED DECISION-MAKING AND
SOME CANCERS DON'T.
>> YEAH, IT SEEMS LIKE THERE
IS A LOT TO EXPLORE ON THE
TYPE OF CANCER BEING TREATED,
YOU KNOW, BREAST CANCER VERSUS
LIVER CANCER VERSUS KIDNEY
CANCER AND THAT MIGHT BE QUITE
DIFFERENT AS TO HOW TO
ORGANIZE THAT TREATMENT PLAN
AND THE TREATMENT OPTIONS THAT
THEY ARE -- FOR PEOPLE TO
CONSIDER IN THE STAGES OF
DIAGNOSES THAT MAY BE
DIFFERENT.
ARE YOU ABLE TO LOOK AT SOME
OF THOSE ISSUES?
FOR EXAMPLE, DO YOU FIND THAT
BREAST CANCER, PATIENTS WITH
SURVIVAL BREAST CANCER ARE
ACTUALLY HAVING A BETTER
EXPERIENCE VERSUS SOME OTHER
TYPE OF CANCER OR DIFFERENT
STAGE OF THAT DIAGNOSES HAVE
DIFFERENT EXPERIENCE?
>> THE DIFFERENT CANCER TYPES,
I DON'T THINK I LOOKED INTO.
I DID LOOK INTO THE STAGING
AND DON'T THINK I HAVE THOSE
SUPPLEMENTAL ANALYSES.
ONE OF THE THINGS WE DID LOOK
AT THAT I REMEMBER FROM THE
TOP OF MY HEAD WAS LOOKING AT
TIME DIAGNOSIS, THOSE THAT
WERE FURTHER AND FURTHER AWAY
FROM THEIR DIAGNOSIS TENDED TO
REFLECT MORE POSITIVE OR
HIGHER RATINGS OF PERCEIVED
TEAM EFFECTIVENESS WHICH I
THINK MAKES SENSE, RIGHT?
SO IF YOU LIVED LONGER THAN
YOU MAYBE INITIALLY THOUGHT OR
LONGER IN GENERAL, YOU REFLECT
MORE POSITIVELY ON THAT
EXPERIENCE.
STAGING, I AM NOT SURE WHAT WE
FOUND WITH THAT ONE THOUGH.
>> AND I THINK THE OTHER PART
IS PROBABLY WHERE YOU HAVE
A -- UNFORTUNATELY THERE IS A
SURVIVAL BIAS HERE, TOO.
SO PEOPLE WHO UNFORTUNATELY
DIDN'T SURVIVE COULDN'T
PROVIDE THE INFORMATION AND SO
THAT IS A ENTIRE SET OF
CONSIDERATION EXPERIENCE THAT
WE COULDN'T GET TO HEAR.
I ALSO WANT TO ASK YOU, HAVE
YOU -- KNOWING WHAT YOU KNOW
NOW THROUGH THIS STUDY, HAVE
YOU TALKED TO HEALTHCARE TEAMS
ABOUT HOW THEY SEE THIS --
LIKE HOW PATIENTS SEE THEM IN
TERMS OF THE TWO SET OF
EXPERIENCES, LIKE TOO MANY
EFFECTIVENESS COORDINATE
NATIONS, THAT MIGHT BE GOOD
BUT SHARED DECISION-MAKING,
HAVING RESPECT FOR THE
PATIENT, NOT SO MUCH.
SO WHAT DO THEY THINK?
>> THAT IS WHAT I AM TRYING TO
DO RIGHT NOW.
I HAVE STRUGGLED HERE
TRANSPARENTLY TO GET IT
INTEGRATED IN THE HEALTHCARE
SYSTEM.
AT NCI I DID WORK WITH PRISMA
HEALTH IN GREENVILLE, SOUTH
CAROLINA WITH THEIR CANCER
CARE CLINIC AND VERY
INTERESTED IN WORKING TOGETHER
RELATED TO MULTIDISCIPLINARY
CARE AND TEAM COORDINATION.
BUT I HAVE STRUGGLED A LITTLE
BIT ANSWERING SOME OF THOSE
QUESTIONS I AM INTERESTED IN
LOOKING AT BECAUSE I KNOW FROM
TALKING WITH FOLKS THAT THERE
ARE CLINICS, LIKE OUR BREAST
CANCER CLINIC DOES HAVE A
MULTIDISCIPLINARY TEAM, THEY
ARE ACTIVELY WORKING AS A TEAM
AND THEN THERE ARE OTHER
CLINICS WHO AREN'T.
SO I AM INTERESTED IN LOOKING
AT THE CARE PATHWAYS FROM OUR
DATA SIDE SO REQUESTING OUR
MEDICAL RECORDS TO LOOK AT THE
CARE TRAJECTORIES AND DELAYS
IN CARE FOR THOSE CANCERS THAT
I HAVE BEEN TOLD HAVE
CHALLENGES HERE TO SEE IF
THERE ARE MORE DELAYS OR
DIFFERENT TREATMENT OUTCOMES.
I THINK SOME PROVIDERS HAVE AN
ISSUE WITH IT AND SOME DON'T
SO THEY DON'T THINK SOME OF
THOSE COORDINATION THINGS ARE
THEIR RESPONSIBILITY AND THAT
IS WHY I AM INTERESTED IN
ASKING THE PROVIDERS THAT DO
SEE IT AS SOME KIND OF
ORGANIZATIONAL TRAINING, IS IT
SOMETHING THEY GOT WHILE THEY
WERE A MEDICAL RESIDENT OR
FELLOW OR WHAT KIND OF DRIVE
THAT -- DRIVES THAT INTEREST
IN SEEING IT AS PART OF YOUR
PURVIEW, PER SE.
>> MM.
IT IS ALSO INTERESTING, IS
IT -- YOU KNOW AS YOU ARE
STUDYING STRUCTURAL AND SYSTEM
LEVEL FACTORS, IS IT THE BEST
FOR THE PHYSICIANS TO BE THE
CARE COORDINATOR?
OR SOME OF THESE PATIENTS
HAVE -- OR THEY HAVE HAD A
PATIENT NAVIGATOR, WOULD THAT
BE A DIFFERENT KIND OF
EXPERIENCE?
BECAUSE I DO FIND THAT BEING A
PATIENT OR FAMILY OF A
PATIENT, SOMETIMES IT IS HARD
TO ADVOCATE IN A WAY THAT IS
RECEPTIVE TO THE MEDICAL
SYSTEM AND A PATIENT CARE OR
PATIENT AND A HALF BARRETT WHO
IS AN ADVOCATE FOR THE PATIENT
WITHIN THE SYSTEM MAY DO A
BETTER JOB THAN THE PHYSICIANS
AND PROVIDERS WHO ARE SEEING
THIS PATIENT ADVOCATE ON A
DAY-TO-DAY BASIS AND MAY
ACTUALLY FACILITATE BETTER
COMMUNICATION.
>> YES, WE DID ASK IF ONE OF
THE PROVIDERS INCLUDED IN OUR
LIST FOR PATIENTS INDICATED
THEY HAD NURSE NAVIGATORS AND
WE DID LOOK AT THAT AND SEE IF
THERE WAS ANY IMPACT ON TEAM
EFFECTIVENESS VERSUS THOSE WHO
DIDN'T SO THERE'S BEEN SEVERAL
GRANTS AWARDED AND STUDIES
FOUND THAT IT CAN FACILITATE
SOME OF THESE ISSUES.
I THINK THE CAVEAT IS IF
PROVIDERS ARE THERE WITH A
NAVIGATOR OR THEY HELP
FACILITATE APPOINTMENTS AND
THINGS LIKE THAT OR IF THEY
SERVE ANOTHER FUNCTION.
SO WHEN I WAS WITH PRISMA
HEALTH AND WORKED WITH THE
ESOPHOGEAL TEAM THERE, THE
CARE COORDINATED ANSWERED
QUESTIONS BUT WHEN I MET WITH
THE CARE COORDINATORS, THEY
SAID NO THAT IS NOT MY JOB.
THEY GET THE DOCUMENTS READY
AND DO SOME SCHEDULING BUT IT
WASN'T WHAT THE PROVIDERS
THOUGHT.
SO I THINK THERE'S SOME
TERMINOLOGY ISSUES THERE.
[ LAUGHING ]
VERSUS CARE COORDINATION
VERSUS SCHEDULER AND SOCIAL
WORKER BUT BECAUSE THERE'S
THIS DIVERSITY ACROSS
DIFFERENT SYSTEMS THAT PEOPLE
HEAR THE TERM AND ASSUME YOUR
FUNCTIONS.
>> THAT IS UNFORTUNATE, THAT
IS UNFORTUNATE.
BECAUSE I DO THINK WHEN YOU
ARE DEALING WITH CANCER OR
COMPLICATED CHRONIC DISEASES
AND INVOLVING MULTIPLE
DISCIPLINES WERE THE PATIENT'S
PERSPECTIVE, IT IS ALMOST IN A
WASH.
THAT SO MANY SYSTEMS YOU ARE
DEALING WITH TODAY, YOU SEE A
NEUROLOGIST AND THEN TOMORROW
YOU SEE SOMEONE ELSE AND LIKE
ALL THESE QUESTIONS, IT SEEMS
LIKE NOBODY IS TRYING TO
ANSWER THOSE, LIKE DO I REALLY
NEED TO CONSIDER THE DOCTOR
AND THEN HOW IS THIS GOING TO
AFFECT MY BOTTOM LINE WITH WE
WANT TO OF CARE AND OFTENTIMES
THAT IS VERY CHALLENGING TO
MAKE A DECISION ON HOW TO GET
YOUR SCHEDULE TOGETHER AND HOW
TO PAY FOR THE TREATMENT AND
OF COURSE OUR SYSTEM IS NOT
VERY GOOD AT LETTING THE
PATIENT KNOW ACTUALLY HOW
RESPONSIBLE THEY ARE FOR
TREATMENT AND YOU GET THE
TREATMENT AND THEN END UP
GETTING THE BILL AND YOU ARE
LIKE THIS IS HOW MUCH I HAVE
TO PAY?
>> YES, AND THE SUSTAINED
EFFECTS OF THAT AS WELL.
SO I AM WORKING WITH A
COLLEAGUE HERE, INTERESTED IN
PEDIATRIC CANCER AND THE
FINANCIAL HARDSHIPS PLACED ON
THE FAMILY, THEY SUSTAIN, YOU
KNOW, DUE TO GETTING TREATMENT
AT A YOUNG AGE.
>> YEAH, HAVE YOU ALSO HEARD
THAT FROM THE PATIENTS YOU
INTERVIEWED IN TERMS OF
FINANCIAL BURDEN AND RECEIVING
TREATMENT, HOW TO DEAL WITH
THOSE SITUATIONS?
>> I THINK ONE OF THE THINGS
THAT I DID HERE IS THERE WAS
NOT ENOUGH EMPHASIS ON THE
PSYCHOLOGICAL SIDE.
SO YOU GET DIAGNOSED, RIGHT,
IN A MEETING AND THEN AT THAT
SAME BREATH, YOU ARE TOLD HERE
IS YOUR TREATMENT PLAN OPTIONS
AND SOME FOLKS REPORTED THAT
LIKE JUST GETTING THE
DIAGNOSIS WAS TRAUMATIZING OR
VERY HARD AND NOW I AM
SUPPOSED TO BE LISTENING AND
PAYING ATTENTION TO MAKING
DECISIONS.
SO THAT IS IMPORTANT AND I
THOUGHT ABOUT IF THERE IS WAYS
TO, I DON'T KNOW, GET THE
DIAGNOSIS, HAVE A PAUSE, IF WE
COULD RECORD THE APPOINTMENT
SO THE PATIENT COULD REFER
BACK.
SOME CLINICS DO KIND OF WHAT
YOU ARE TALKING ABOUT WHERE
YOU CAN DEFINE THE DIFFERENT
ROLES AND RESPONSIBILITIES OF
A TEAM AND THEN AT PRY PRIOR
INSTITUTION, THEY ACTUALLY HAD
A MAPPED PATHWAY OF HERE IS
YOUR ANTICIPATED CARE
TRAJECTORY GIVEN THAT YOU HAVE
THIS STAGE AND THIS DIAGNOSIS
AND HERE ARE THE DIFFERENT
PEOPLE THAT FILL THESE ROLES
SO IT IS ALMOST LIKE A NURSE
NAVIGATION KIND OF PATHWAY
MAPPING.
SO I THINK THINGS LIKE THAT
ARE REALLY HELPFUL FOR
PATIENTS BECAUSE THEY KNOW --
THEY CAN REFER TO THEM LATER
BUT THE OTHER END OF THAT
COIN, RIGHT, IS GETTING TOO
MUCH INFORMATION.
SO I THINK THE FINDINGS --
FINDING THAT BALANCE BETWEEN
THINGS THAT ARE TAILORED
ENOUGH TO PATIENTS BUT CAN BE
REPRODUCED ACROSS THE SYSTEM.
>> YEAH, I PARTICULARLY FIND
THAT STRIKING, IS YOUR DATA ON
COMORBIDITIES LIKE IN TERMS OF
DEPRESSION OR ANXIETY, YOU
DESCRIBE TO ME TOLD YOU HAVE
CANCER IS FAIRLY PSYCHOLOGICAL
AND TRAUMATIC SO WHEN YOU LOOK
AT THE MULTIDISCIPLINARY TEAM
DO THEY HAVE PEOPLE THAT CARE
FOR THE PSYCHOLOGICAL IMPACT
OR YOU KNOW COUNSELOR OR
ANYBODY THAT CAN TAKE CARE OF
THAT ISSUE?
>> SOME PLACES DO.
I THINK THAT -- SO A LOT OF
OUR SAMPLE, BECAUSE THEY HAD
TO HAVE THE COMORBIDITY AT
DIAGNOSIS, THEY ALREADY HAD A
PRIME CARE CARE OR
PSYCHIATRIST MANAGING THOSE
AND THERE ARE SOME CLINICS
THAT HAVE IMPLEMENTED THE
PSYCHIATRY PIECE IN THE CLINIC
BUT THAT IS NOT STANDARD
PROJECTS.
SO THE MULTIDISCIPLINARY
CLINIC DOES NOT HAVE A TRUE
STANDARD GUIDELINE FOR HOW TO
IMPLEMENT IT, WHO ALL NEEDS TO
BE THERE AND WHAT IT LOOKS
LIKE SO THAT IS PART OF WHAT I
AM HOPING MY RESEARCH CAN
CREATE THAT THERE IS SOME KIND
OF POLICY PROPOSAL OR
SOMETHING THAT MAKES THIS A
MORE SYSTEMIC PROCESS RATHER
THAN, I DON'T KNOW, EVERYBODY
HAS THEIR OWN VIEW OF THAT AT
THEIR CLINIC BUT SOME TEAMS
HAVE IMPLEMENTED THE
PSYCHIATRY SIDE INTO THEIR
MULTIDISCIPLINARY CLINIC.
>> WELL, I CERTAINLY HOPE YOU
CONTINUE THIS RESEARCH AND
HELP US FIGURE OUT WHAT IS THE
BEST COMPOSITION OF THE
HEALTHCARE TEAM FOR CANCER
PATIENTS AND ALSO FOR
PATIENTS' OTHER ILLNESSES AND
ADDRESS THE UNIQUE CHALLENGES
OF RACIAL MINORITIES AND THOSE
ARE LOWER SOCIOECONOMIC
STATUS, MINORITIES AND ALSO IN
THE RURAL AREA BECAUSE I THINK
FOLKS IN THE RURAL SETTLINGS
WITH A PARTICULAR CHALLENGE
AND JUST THE PHYSICAL DISTANCE
GOING TO SEE DIFFERENT
SPECIALTIES AND DIFFERENT
APPOINTMENTS WHEN THE CLOSEST
HOSPITAL IS LIKE THREE, FOUR
HOURS DRIVE EACH WAY, THAT IS
LIKE EXTRA BURDEN ON TOP OF
ALL THE APPOINTMENTS AND
MEDICAL NEEDS THAT THEY HAVE
TO ATTEND TO.
I HOPE YOU WILL FIND A
SOLUTION FOR US AND THEN YOU
CAN COME BACK AND TELL US WHAT
YOU HAVE LEARNED.
>> WELL, I HOPE I CAN
ALLEVIATE SOME OF THE
BREAKDOWNS AT LEAST BUT YES,
THANK YOU SO MUCH FOR HAVING
ME AND FOR THE SUPPORT IN THIS
WORK.
IT WAS REALLY EXCITING AND
BENEFICIAL I THINK TO MOVE
THIS AREA OF RESEARCH FORWARD.
>> THANKS FOR COMING IN AGAIN,
WE APPRECIATE THE WORK THAT
YOU DO AND LOOKING FORWARD TO
YOUR FUTURE WORK AND IF YOU
DO, REACH BACK OUT TO US AND
WE WILL HAVE YOU IN AGAIN.
THANK YOU.
ALL RIGHT, THANKS EVERYONE,
TAKE CARE.
HAVE A GOOD REST OF YOUR WEEK.