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Towards
aHealthier,WealthierUK:UnlockingtheValueofHealthcareDataJuly2023BCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data2Who
we
arePage
3Executive
summaryPage
4Chapter01Page
12IntroductionChapter02UsecasesPage
19Page
32Page
51Chapter03ImplementationfactorsChapter04KeyrecommendationsAbout
theauthorsSurveymethodologyReferencesPage
53Page
54Page
55About
the
Centre
for
Growth:BCG|CentreforGrowthBCG’sCentre
forGrowthfocuses
on
acceleratingsustainable
andinclusiveeconomicgrowthintheUKbyworkingwith
businesses,
government,and
widersocietyto
deliver
breakthroughoutcomes.As
partofBCG,
theCentre
forGrowth
bringstogetherideas,
people,
and
actionto
drivetheUK
forward.
Wework
with
ourglobalexpertnetworkto
identifytransformationalopportunities,
connectkeydecision-makers,
andbuildcoalitionsforchange.
We
offer
long-termstrategic
insight,
extensive
cross-sector
expertise,platformsfor
dialogue,
and
biasto
action.About
BCG:Boston
Consulting
Group
partnerswith
leadersinbusiness
andsocietyto
tackletheirmostimportantchallengesand
capture
their
greatestopportunities.
BCG
was
the
pioneerin
businessstrategy
when
itwas
founded
in1963.
Today,wework
closelywith
clientsto
embrace
atransformationalapproachaimedatbenefitingallstakeholders
-empoweringorganisations
togrow,
build
asustainable
competitiveadvantage,and
drivepositive
societal
impact.Our
diverse
globalteamsbringdeepindustryand
functional
expertiseand
arangeofperspectives
thatchallengethe
status
quoandsparkchange.
BCG
deliverssolutions
throughleading-edge
managementconsulting,technologyanddesign,
and
corporate
and
digitalventures.
Wework
ina
uniquely
collaborativemodelacross
the
firm
and
throughout
alllevelsoftheorganisation,
fuelled
by
thegoalofhelpingourclientsthriveandenabling
them
to
make
theworld
a
betterplace.“Collaborationcanachievebreakthroughchange.Opportunitiesfor
disruptioncanenergise
theUKeconomy.
”BCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data4Executive
summaryThe
UK
faces
several
challenges
over
the
comingyears
as
we
exita
period
of
almost
unprecedenteduncertainty.
But
there
are
two
that
stand
out-
thepoor
outlook
for
the
economy
and
the
hugepressure
weighing
on
our
healthcare
system.With
its
vast
amount
of
healthcare
data
andleading
position
in
life
sciences
andartificialintelligence(AI),
the
UK
has
a
unique
opportunityto
unlock
the
value
of
this
resource
and
worktowards
becoming
a
healthier
and
wealthiercountry.
Capturing
the
full
benefits
of
healthcaredata
–
an
opportunity
that
has
been
long
mootedbut
never
grasped
–
can
lead
to
better
patientoutcomes,
more
efficient
healthcare
delivery
andwill
help
drive
R&D,
innovation
and
investmentacross
the
life
sciences
and
tech
industries.
Wherehealthcare
data
has
been
used
in
this
way,
bothregionally
in
the
UK
and
in
other
countries,
therehave
been
significant
benefits
realised.
In
thispaper
we
discuss
the
current
challenges
inThe
country’s
low
productivity,
falling
real
wages,and
lagging
business
investment
are
hitting
theeconomic
growth
outlook
whileinflation
andinterest
rates
arerising
sharply
–
precipitating
acost-of-living
crisis.
At
the
same
time,
both
NHSwaiting
lists
and
the
number
of
people
out
of
theworkforce
due
to
long-term
illness
are
at
recordhighs
of
7.42
million1
and
2.5
million2
respectively.Neither
of
these
challenges
are
insurmountable.But
solving
them
needs
creative
thinking
andurgent
action.utilising
healthcare
data
and
outline
18
keyrecommendations
for
policymakers
to
unlock
thevalue
of
healthcare
data
in
the
UK.
The
fullrecommendation
list
can
be
found
in
Chapter
4.Healthcaredata
can
havemultiple
benefitswhen
usedin
therightwayNearly60%10pp+£200030%reduction
inhospitalisations1improvement
insuicideattemptprevention2saving
on
hospital
admissionfor
a
patient
with
AKI3reduction
inreoperationsafter
complications4•
Sutter
Health
integratedreal-time
patientprogressdataintotheir
clinical•
New
models
combinedelectronic
health
recordsandanswersto•
App
alertsclinicians
topatientsatriskofAcuteKidney
Injury(AKI)•
Datasharingfor
key
value-based
metrics
acrossnetworkdecision-making
processesquestionnaires•
Bringstogether
datafromblood
tests,
medical
historyandclinicaldecision
tools•
Reoperations
due
topostoperative
complicationsafter
lumpectomy
droppedby
27%onaverage•
Delivered
reductions
of
60%in
hospitalisation,
13%
in•
Predicted
suicideriskmoreaccuratelythan
previousmodelsemergency
department
visitsand
70%
in
days
spent
in
ICU1.The
Commonwealth
Fund.Supporting
Patients
Through
Serious
Illness
and
the
End
of
Life:
Sutter
Health’sAIM
Model,
January
2018.
2.Simon
etal.,
2018.
American
Journal
of
Psychiatry.3.UCL.Mobileappspeedsup
review
and
treatment
of
acutekidney
injury,August
2019.
4.BCG.How
DutchHospitals
MakeValue-BasedHealthCare
Work,
2018BCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data5To
understand
publicperceptionsaroundaccessand
useofhealthcare
data,
BCG
conductedarepresentative
surveyofthe
publicinEngland(references
to
the
NHSin
thisreportrefer
toNHSEngland,
butmuch
ofouranalysis
isrelevant
across
allnations
intheUK).
Oursurveyfoundthat,
contraryto
popularbelief,peoplearegenerallyopento
allowingaccesstotheir
healthcare
data.
However,
thepublic’ssupportfordata
sharing
isdependent
ontargetingthemost
impactful
usecases,Recommendation:
Detail
the
outcomesfromspecificusecases
ofmakinghealthcare
datamore
accessible
to
generatepublicsupportandunderstanding.Supportforsharingdata
with
theNHSisveryhigh,
with
90%ofpeoplewillingto
share
datawith
theNHSforanypurpose.
While
supportislowerforotherorganisations,
there
isstill
muchmore
supportthanopposition
–withtheexception
oftechcompanies.
Here,
buildingpublictrustwill
bevital
ifthey
areto
beinvolvedinthisspace.articulatingoutcomes,
and
ensuringthatsecurity
and
privacyconcernsare
addressed.There
is
huge
support
for
sharing
personal
health
data
with
the
NHS
and
moresupport
than
opposition
for
all
other
organisations,
apart
from
tech
companiesDoyousupport
oroppose
sharingyour
personal
healthdata
with
thefollowingforanypurpose?TheNHSPharmaceuticalcompaniesCentralgovernment90%7%
3%41%29%31%1%2%2%29%28%29%30%39%AcademicinstitutionsLifesciences
companiesTechcompanies38%31%33%32%5%13%27%2%58%Source:
BCGHealthcareDataSurvey2023SupportNeither
support
noropposeDon'tknowOpposeBCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data6Our
report
and
survey
demonstrate
that
when
thepotential
benefits
are
clearly
communicated,
andthe
right
processes
are
put
in
place
to
managetrust,
the
public
are
supportive
of
allowing
accessto
their
data.
However,
previous
missteps
meantrust
is
fragile
and
cannot
be
taken
for
granted
orsquandered.
Much
work
is
already
under
way,building
on
the
Goldacre
Review
and
the
NHS’s“Data
Saves
Lives”
strategy.
But
it
is
important
theUK
does
not
miss
the
opportunity
to
progressefforts
ina
way
that
maximises
the
potential
value,both
in
terms
of
patient
outcomes
and
widereconomic
benefits.
We
have
identified
and
testedpublic
support
fora
series
of
actions
that
can
helpachieve
this
dual
value
proposition.theSDEs
includingsocioeconomicanddemographic
data
from
tax
records,
welfareclaimsand
censusrecords,
behaviouralinformationfrom
consumerdata,
andlifestyledata
from
wearablesand
mobilephones.This
will
support
better
identification
of
at
riskgroups
within
the
population,helping
to
preventdisease
before
it
develops
or
worsens.
It
will
alsohelp
to
improve
communication,ensuring
bettertargeting
so
people
are
more
informed
abouttheir
risks
and
healthier
life
choices.II.
Disease
pathwaysThe
move
from
data
sharing,
where
data
istransferred
to
external
parties,
to
data
access,where
data
is
hosted
on
platforms
known
asSecure
Data
Environments
(SDEs)
and
access
iscontrolled,
has
been
under-discussed
with
thepublic.
Our
survey
shows
that
when
people
areengaged
on
this
point,
a
substantial
majority
(86%)said
they
felt
more
comfortable
with
data
accessover
data
sharing.
The
UK
is
therefore
alreadystarting
from
a
stronger
position
than
ever
before.Recommendation:Fully
integrate
the
widestrange
of
healthcare
data
into
SDEs,
includingbiomarkers
and
multimodal
health
data.This
will
help
maximise
understanding
ofdiseases
including
better
mapping
of
howdiseases
spread
and
develop,
and
thebiomarkers
used
to
identify
them.
It
will
alsoallow
for
more
personalised
interventions,as
itincreases
the
knowledge
of
how
different
groupsrespond
to
different
treatments.To
build
on
this
we
believe
it
is
crucial
to
movetowards
targeting
specific
outcome-based
usecases.
These
will
help
build
and
maintain
publicsupport
and,
by
properly
targeting
the
use
casesand
designing
the
SDEs
with
them
in
mind,
thepotential
value
of
data
can
be
maximised.Leveraging
AI
and
machine
learning
is
a
commontheme
whichwill
be
crucial
across
the
piece
ifthese
outcome-based
use
cases
are
to
beachieved.
For
example,
modelling
of
early
AI
R&Dtechnologies
has
already
indicated
a
potentialreduction
in
time
and
cost
of
drug
discovery
by
aminimum
of
25-50%3.III.
Clinical
trialsRecommendation:Improve
the
process
ofsetting
up
and
recruiting
for
clinical
trials
intheUK,
by
developing
an
accessible
‘conciergeservice’
to
quickly
determine
whether
aparticular
trial
is
feasible,as
well
as
tools
toexplore
the
sensitivity
of
inclusion/exclusioncriteria
for
clinical
trial
participants.Along
with
other
steps,
such
as
those
set
out
inthe
recent
Lord
O’Shaughnessy
review,
this
canhelp
restore
the
UK’sposition
as
a
leading
placeto
conduct
clinical
trials.
In
turn,
this
should
helpdrive
investment
and
innovation
into
the
UKacross
related
sectors,
and
ensure
the
UK
is
atthe
forefront
of
healthcare
discovery.Recommendation:
Focus
on
outcome-basedusecases
in
the
followingfour
areas:I.
PreventionRecommendation:
Allow
for
integration
ofawidervariety
ofnon-healthcare
data
intoBCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data7IV.
Clinical
careThis
can
help
improve
diagnosis
in
hospitals,potentially
reducing
waiting
times
andimproving
treatment
by
giving
a
richer
view
ofthe
impact
of
past
treatments
on
differentpatients.Recommendation:Leverage
new
technologiesincluding
machine
learning,generative
AI,
andAI-driven
algorithms
to
optimise
clinical
caredecision-making
and
resource
management
inthe
NHS.We
tested
these
use
cases
with
the
public
inoursurvey
and
found
broad
support
for
all
of
them.This
illustrates
that
when
the
potential
benefitsand
outcomes
of
accessing
personal
health
dataare
properly
explained,people
are
supportive.Thereismajoritysupport
for
data
beingusedin
all
usecasesImagineyourpersonalhealth
data
was
made
accessible
onasecureplatform.
For
eachofthefollowing,would
yousupportoropposeyourdata
beingused?SupportOpposeTohelp
understand
myindividuallikelihood
ofspecific
diseases
orillnesses8%1%77%76%14%16%Enableimprovements
inclinicalcareprocesses
suchasscreening
foranddiagnosing
illnesses6%2%Comparing
any
treatments
I’m
given
with
how
others
respondto
help
researchers
understand
how
to
treat
specific
diseases
better71%19%2%
8%Compilingaregister
ofpotential
organ
orblood
donorsforaccess
by
hospitals64%19%22%2%
15%2%
14%3%
15%Helpidentifyeligibleparticipantsinclinical
trialstospeed
upclinicalresearch62%Helphospital
andmedical
staffrecruitaccording
to
whichservices
havehighest
need58%24%Enabling
the
government
to
understandwhere
tobuildnew
medical
facilities
andhow
best
to
utilise
existing
ones52%27%3%18%Source:
BCGHealthcareDataSurvey2023SupportNeither
supportnor
opposeDon't
knowOpposeBCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data8As
wellastargetingtheseoutcome-basedusecases
there
areseveral
successfactorsthatarecrucial
forrealising
the
full
potential
ofdataandthecreationoftheSDEs:Inthelongerterm,
the
NHSshould
establishpublicdecision
panels,
such
asthepublicparticipationpanelalreadyusedbyGenomicsEngland,
andmore
accessible
data
usageregistersfor
engaging
thepublicindecisionsaroundhow
their
data
willbeaccessed
andused.
Our
surveyshowed42%said
theuseofpublicdecision
panelsmadethem
morecomfortable
with
data
beingcollected
andaccessed,
while
47%were
reassuredbydatausageregisters.
These
steps
are
keyto
ensuringthepublicareempowered
with
therightinformationand
proactivelyinvolved
inthedecision-making
process.Datatransparency
andpublicengagementTrust
and
transparencyareprerequisiteswhen
itcomesto
healthcare
data.
It
isvital
to
proactivelybuildpublictrustand
ensure
transparency
ateverystage
ofdata
access.
This
includesagenuinewillingness
to
understand
andcommunicate
lessons
thathave
beenlearntfrom
past
mistakes.Recommendation:
Put
in
placethe
rightframeworks
and
mechanismsto
deliver
the
leveloftransparency
andinformationneeded,includingacleareffort
to
beopen
aboutwhatlessons
havebeenlearntandhow
processeshavebeen
adapted.
This
willensurethatpublictrustismaintained
over
time.Recommendation:
Use
publicdecision
panelsand
datausageregistersto
engage
the
publicindecisions
aroundhow
their
data
willbeaccessedand
used.
Thiswill
helpensurethey
haveasayindecision-making
processes
and
canreviewand
refresh
theseprocesses
over
time(e.g.assess
what
level
ofengagementisneeded
fromparticipantswithrelevant
characteristics).Intheshortterm,
akeypartof
thiswillbeestablishing
betterpubliccommunicationsaroundhealthcare
datausageand
itspotentialbenefits.
Thisshould
form
partofawiderlong-termpublicengagementstrategy
thatisUseofCOPInoticesDuring
the
pandemic,
ControlofPatientInformation(COPI)noticeswereusedtocoherent
across
NHSdata
projects.
Acommonmisconception
hasbeen
thatindividualsopposeaccessto
their
personal
healthdatabydefault,which
hasledto
ageneralunwillingnesstoengagethepublicon
the
topic.
However,
ourresultsshow
thatnearlythree-quarters
ofpeople(73%)
eitherwantedto
beproactively
toldabouttheuseoftheir
data
(37%)orbeableto
requesttheinformation
(36%)
when
they
wanted.
It
istherefore
importantthatstakeholders
donotshyaway
from
conversations
abouthow,
where,
andwhy
datais
accessed.
Section
3.1details
the
keyareasthiscampaignmustaddressbased
on
oursurveyfindings.expeditethegatheringofandaccess
to
dataacross
thehealthcare
system,
even
ifindividualshad
opted
outofdata
sharing.
COPInotices
wereusedto
supportunderstanding
ofdisease
andwere
criticalto
theUK’srapididentification
anddeliveryoftreatments,
includingvaccines.We
found
there
is
broad
support
(53%)
fordeploying
a
similar
approach
in
the
future.
Thisrises
significantly
if
used
to
address
some
of
themost
acute
challenges
facing
the
NHS.
Nearlythree-quarters
of
respondents
support
the
use
ofnotices
(or
similar)
for
researching
chronic
and/orserious
diseases
(73%)
and
treating
andpreventing
long-term
serious
disease
(72%).
Two-thirds
(65%)
also
supported
the
use
of
theseregulations
to
improve
efficiencies
in
the
NHS
thatwould
reduce
patient
backlog.Recommendation:
Establish
ajoined-uppublicengagementstrategy
thatisconsistentlyadopted
across
allNHSdata
projects,
withaspecificcomms
campaignaroundhealthcaredata
usageandthepotential
benefits.BCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data9Consideration
should
be
given
to
using
thisapproach
for
the
most
difficult
challenges
facingthe
NHS
in
the
future.
However,
it
must
be
done
insucha
way
that
engages
the
public
early,
involvesthem
over
time,
and
clearly
explains
the
benefitsand
end
goal.Recommendation:
Consider
using
COPInoticesmore
frequently
beyondCOVID-19.
Thisincludesutilising
them
forresearchingchronicand/or
seriousdiseases,
treatingand
preventinglong-termseriousdiseases,
and
improvingefficiencies
intheNHSto
reduce
thebacklog,
assupportedbythepublic.Continuingthesame
approach
to
data
access
used
in
COVID-19garneredmajoritysupport
inanumber
of
high
impactareasDoyouthinkitis
appropriateorinappropriatefordata
to
becollected,
usedand
shared
in
asimilarway
to
duringCOVID-19foreachofthefollowingscenarios?Researching
chronic
and/or
seriousdiseases
like
cancer
and
Alzheimer’s73%72%11%
4%
12%12%
4%
11%Treating
and
preventing
long-term
seriousdiseases
e.g.cardiovascular
diseasesImproving
efficiencies
in
theNHStoreducethebacklog65%15%15%5%6%15%15%Responding
toother
futurepublic
healthemergencies64%Understanding
more
aboutmental
healthconditions58%17%7%18%Helpingpharmaceutical
companies
developnew
treatments
for
serious
and/or
long-term
diseases58%56%56%18%6%18%19%19%Researching
and
developing
treatments
for
betterhealth
e.g.
smoking-related
illnesses19%6%Speeding
up
clinicaltrialstohelpidentifyand
launch
new
drugsinthe
UK19%6%Helpingdigital
healthcompanies
developnew
productsbasedon
your
needs33%25%8%34%AppropriateDon't
knowSource:
BCGHealthcareDataSurvey2023Neither
appropriate
nor
inappropriateInappropriateBCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data10Designandoperation
ofSDEs•Bringskillsinto
theNHStoensure
thequalityofdataontheSDEsisofthenecessary
leveland
theworkforceisequippedto
analyse
thedataanduse
theanalyticaltoolsprovided.Aspart
oftheshiftfromdata
sharingtodataaccess,
thegovernment
isbuildingaseriesofSDEsatboth
anational
and
sub-national
level
tobringtogether
data
forresearch.Section3.2includesmoredetail
onourseriesofrecommendationstoensurethey
aresetupinawaythat
maximisespatientandeconomicbenefits.
Thecommonthemeisthat
theSDEsneedtobefullyresourced
overthemedium
andlong-term–apotentiallycostlyexercise.
Itisthereforevitalthat
theirvalueisfullycapturedand
partially
reinvested
tocovertheirrunningcostsanddevelopment
overtime.
Itwillalso
beessential
tohavesufficientsupportfromtheIntegratedCare
Boardsto
ensure
that
theSDEsaresufficientlyfundedand
resourced.••Ensure
sufficientfunding
isputinplacetotarget
outcome-basedusecases.Introducetargetsto
holdIntegratedCareBoards
(ICBs)directlyaccountable
forcreatingresearchopportunitiestoensuresufficientresourcingofSDEs.CapturingvaluefromdataTheNHSmustcaptureand
reinvest
thevaluecreatedfrom
data
access.
Thisisvitalforensuringtheeffectiveness
andlongevity
of
SDEsandrealisingthewide-reachingbenefitsofbetterhealthcaredata
access.Recommendations:Asimplewaytodothiswouldbetochargecertainorganisations
for
access
to
the
SDEs,thoughthismayriskmissingsomeofthevaluecreateddowntheline.
Furthermore,
thecurrentapproachtakenby
theNHSistomakeaccesstothe
SDEsfree.
Ifdataaccessistobefree,it
isvitaltheNHS
usesalternativevalue-sharingmechanismsto•Review
theDataAccessRequestService(DARS)
processonce
theSDEsarefullyupand
running
toensureitisasstreamlinedaspossible,
whilstmaintaining
thevitalsecurityand
ethicalchecksonthoseseeking
toaccessthedata.adequatelycapturethepotentialvalue.
Thismayrequire
aflexible
approachthat
drawsuponarange
ofshort
and
long-termvalue-capturingmechanisms,
depending
onthesituation.
Clearguidance
shouldbeprovidedsoallpartsoftheNHSareconsistently
abletounderstand
thepotentialvalue
indatauseand
negotiate••Ensure
theDARSprocessissufficientlyresourced.Review
and
revise
(whereappropriate)thenecessary
purposeandbenefitsofdataaccesstoalsocapturewiderpotentialbenefitsto
theUK
economyfrom
innovation.appropriateterms
thatdelivermaximum
value.Someofthismustthenbereinvested
back
intolocalNHSservices.•Createaservice
wrapperthatprovidesallNHSSDEs(national
and
sub-national)
with
thesamebasic
governance
andadministrativeprocessessuchasapplicationsforpermissions,
requirementsfor
approval,andmanagement
oftheusersaccessing
thedata.This
final
point
is
crucial.
We
found
that
66%
of
thepublic
do
not
mind
value
or
profits
being
generatedfrom
their
healthcare
data
providing
some
of
thatvalue
is
reinvested
into
the
health
system
and/orthere
are
wider
public
benefits.
When
this
happens,the
level
of
support
for
profit-making
from
healthdata
was
more
than
double
that
of
thoseuncomfortable
with
any
profit-making.
We
believethe
best
way
to
reinvest
into
the
healthcare
systemwould
be
to
createa
central
fund
where
revenuefrom
healthcare
data
is
collected
and
used
toreinvest
in
local
NHS
services,
as
well
as
to
helpresource
the
SDEs
over
time.••MaintainanelementofcompetitionbetweenSDEs–such
asonservicesandanalyticaltools,including
marketplacesfor
them
–tohelpfosterinnovation
and
driveimprovements.IntegratedataacrossthenationalSDEandsub-national
SDEs,aswell
astheFederatedDataPlatformwhichisalso
beingbuilt.BCG|CentreforGrowthTowardsaHealthier,
Wealthier
UK:UnlockingtheValueof
Healthcare
Data11Respondents
were
significantly
more
comfortable
withprofit
beinggenerated,
ifsomeof
thoseprofits
were
reinvestedinthehealth
systemHealthdatacan
beusedto
provide
insightson
drug
developments
andtechnicalinnovations.
Thiscanalso
resultinfuture
profitsfor
thosecompanies,
as
wellaswiderpublicbenefitsthroughimprovedhealthcare
(e.g.
more
effectivetreatmentsfor
disease).
Which
ofthefollowingisclosest
toyour
view?5%6%Comfortable
withhealth
datagenerating
profit
inany
scenario25%Comfortable
withhealth
data
generating29%profit
if
italso
generates
wider
public
benefitsComfortable
withhealth
data
generating
profitif
some
of
the
profit
isreinvested
inthe
health
systemUncomfortable
withany
profitsgenerated
from
health
dataDon’t
know35%Source:
BCGHealthcareDataSurvey2023There
are
fewpoliciesthatcouldaddresspressureontheNHSand
boostoureconomy–makingbetteruseofhealthcare
data
isone.
Furthermore,
itdoes
notneed
majoradditional
investment
orspending.
It
isanopportunitywecannot
afford
to
miss.Recommendations:•Establish
a
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