Linux基金会：2024健康数据互操作性的开放架构研究报告 An Open Architecture for Health Data Interoperability

AnOpenArchitectureforHealthData

Interoperability

HowOpenSourceCanHelptheHealthcare

SectorOvercomethe“InformationDarkAges”

AnnaHermansen,TheLinuxFoundation

Forewordby

LeoAnthonyCeli,MITLaboratoryforComputationalPhysiology

October2024

AnOpenArchitectureforHealthDataInteroperability

TheEuropeanHealth

DataSpaceandtheTrusted

ExchangeFramework&CommonAgreementaretwoexamplesofinitiatives

workingtoenhancehealthdataexchange.

Healthcareisauniqueandcomplexsectorthatis

highlyregulated,is

riskaverse,andmustconsideradiversesetofstakeholders.

Healthdataissiloedanditsexchangehamstrungbyentrenchedincumbentrecordsystemsthatlackinteroperability.

Commonmisperceptionsof opensource,suchasalack oftechnical&legalsupportandcommercial inviability,alsoexistinthedigitalhealthsector.

Opensourcesolutionsare gainingtractioninEurope anddevelopingcountries, embracingefficiencyandagilityinregionsthatprioritizecollaborationandcostsavings.

Opensourcedigitalhealthsolutionscanincreasehealthequity,de-riskinnovation,and

removevendorlock-in.

Aprecompetitivedigitalhealtharchitecturewouldstandardizethecomponentsofthesystemandallowforthe

developmentofapplicationsthatareportable,sustainable,and

interoperable.

Twoexamplesofopen

sourcesolutionsareDHIS2,usedfordatamanagementinover100countries,and

SORMAS,usedforoutbreakmonitoringinover15countries.

Artificialintelligenceholds significantpromiseinhealthcare,anditsdataneedsmaycatalyzethedevelopment ofmoreeffectivedataexchangeinfrastructure.

Aneutralfoundationis

necessarytocreateacenterofgravityforopen

sourcehealthsolutionstocollaborate,learn,and

standardizearoundaprecompetitivelayer.

Tobuildlifelongrecords,datamustbesemantically

standardizedand

patientcentric,

separatingthedatafromtheapplicationsandusinga

commondatastore.

Innovativeandagilesolutionscanworkaroundincumbent

platforms,allowingfor

bottom-updevelopmentandanopeningupofthedigitalhealthmarket.

Copyright©2024

TheLinuxFoundation

|October2024.Thisreportislicensedunderthe

CreativeCommonsAttribution-NoDerivatives4.0InternationalPublicLicense

Contents

Foreword 04

Executivesummary 05

Thestateofthehealthtechsector 06

Healthcareasauniqueandcomplexsector 06

Thepeopleandprocessesbehinddigitalhealth

transformation 08

Innovationindigitalhealth 10

Nonstandardizeddataexchangeinfrastructure 12

Healthdatastandardsandinteroperability 13

EHRincumbentmarketpower 16

Opensourceforhealthdatamanagement 18

(Mis)perceptionsofopensource 19

Benefitsofopensource 22

Opensourcehealthcaresolutionsaroundtheworld 27

AIthecatalyst 30

Movingthesectorforward:Recommendations

fromexperts 32

Buildingadigitalhealtharchitecture 32

Standardizingdata,semantically 34

Tryingnewbusinessmodels:Innovationaround

incumbents 36

Nextsteps:Theroleofthefoundation 36

Conclusion 38

Methodology 38

References 39

Acknowledgments 41

Abouttheauthor 4

1

Foreword

Theproliferationofdigitalhealthdatahasledtosiloed

systems,makingitdifficultforstakeholderstoaccessand

shareinformation,whichultimatelylimitsresearchandpatientcare.Thehealthcaresectorfacessignificanthurdlesindata

interoperabilityduetothenonstandardizednatureofelectronichealthrecords(EHRs),whichcomplicatesaccesstoandsharingofhealthdata.Theuniquecharacteristicsofhealthcare,suchasunpredictabledemand,ethicalobligations,andstrictregulations,contributetothecomplexityofmanaginghealthsystemsand

hindereffectivedigitalization.Effectivegovernanceiscriticalbutoftenoverlookedinhealthtechnologyprojects.Poorgovernancecanimpedethesuccessofdigitalhealthinitiativesandleadto

ineffectiveimplementations.

AsthisreportfromtheLinuxFoundationillustrates,opensourcesolutionsofferapromisingavenueforenhancinghealthcare

datamanagementbypromotingcollaboration,transparency,andcost-effectiveness,althoughadoptionfacesresistance

duetomisperceptions.ProprietaryEHRsystemscreatevendorlock-in,limitingflexibilityandtheabilitytocustomizesolutionstomeetspecifichealthcareneeds,whichcannegativelyimpactpatientcare.Opensourceprojectsbenefitfromcommunity

involvement,whichcanprovideongoingsupport,reduce

dependencyonsinglevendors,andenhancethesustainabilityofhealthcaresolutions.Theethicaldimensionofhealthcarealignswellwithopensourceprinciples,emphasizingtheneedfortransparencyandsharedknowledgetoimprovepatient

outcomesandpublichealth.

Thepracticeofusingencryptionforprotectingintellectual

property(IP)datesbacktoGalileoin1610andhasrootsin

ancientcivilizations,highlightingthelong-standingneedfor

safeguardingvaluableinformation.Themodernopensciencemovementaimstodemocratizeaccesstoscientificknowledge,

addressinghistoricalinequitiesandpromotingtransparency,

accessibility,andinclusivityinresearchandinnovation.Key

milestones,suchastheBudapestOpenAccessInitiativeand

UNESCO’s2021RecommendationonOpenScience,underscoreeffortstomakesciencemoreequitableandaccessible.The

COVID-19pandemicdemonstratedthepotentialofopenscienceforrapiddatasharingandcollaboration,highlightingthe

importanceofequitableaccessinglobalhealthresponses..

Butdespiteitsideals,opensciencefaceschallenges,includingstructuralinequalitiesandentrenchedsystemicpractices

thathinderequitableaccesstoknowledgeandmaterial

resources.Opensciencedoesnotunfoldinavacuumbutin

anecosystembesiegedwithpowerdynamicsandknowledge

hierarchies,marginalizingcertaingroupsandcountriesand

affectingtheircredibilityandaccesstoscientificdiscourseandengagement.ThedominanceoftheGlobalNorthinscientific

endeavorscreatesdisparities,withactorsincludinginnovatorsfromlow-andmiddle-incomecountriesoftenfacingbarriers

tocollaboration.Aradicalreimaginationofopenscienceis

necessary,advocatingfortheinclusionofmarginalizedvoicesandaddressingexistingpowerimbalancesinthetechnologicalcommunity.Ultimately,theimpactofopenscience,justlikeanyotherdisruptiveinnovation,hingesonwhosetstheagendaandwhocontrolsthemovement.

Atthismomentofreimagination,importantchangecanstartwithintheopensourcecommunity.Wehopethatthisreportinspiresreaderstoinitiatethenextwaveofdevelopment,

collaboration,andinnovationforthehealthtechnologysector.

LEOANTHONYCELI

ClinicalResearchDirectorandSeniorResearchScientistMITLaboratoryforComputationalPhysiology

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY4

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY5

Executivesummary

ThisLinuxFoundationresearchreportreviewstheadoption,

perceptions,andpotentialofopensourceinhealthdata

infrastructure.Itstartswithanoverviewoftheunique

characteristicsofthehealthcaresectorandhowthisimpacts

innovationanddigitization.Itthenfocusesontheprimary

problemstatementofthisresearch,namelythelackof

interoperabilitybetweendatasystemsandhowthishinders

datasharing.Itaddressesanumberofreasonswhythereisa

lackofinteroperability,includingthemarketpowerofincumbentelectronichealthrecord(EHR)systems.Turningtoopensource,

theresearchdiscussestheperceptionsofandchallengestoopensourceadoptioninthehealthtechsectorandhowthesector’s

interoperabilitychallengesmakeitarelevantapplicationfor

opensource.Afteraddressingthewaythatartificialintelligence(AI)couldpotentiallycatalyzeatransformationofhealthdata

collectionpractices,thereportconcludeswithrecommendationsonhowtomoveforward,includingthedevelopmentof

anarchitectureofstandardsandtechnologiestoincreaseinnovationanddatasharing.

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY6

Thestateofthehealthtechsector

Thedigitaltransformationofhealthcarehasledtotheexponentialgrowthofdatastoresusefulforproviders,researchers,institutions,andcompaniestoimprovecareforpatients.Asignificantaspectofthisdigitaltransformation

wastheintroductionofEHRsaroundtheworld,whicharedigitalsystems

usedtocaptureandmanagehealthdata,primarilyinahospitalsetting

1

.

DespitewidespreadadoptionofEHRs,accessingthisdataremainsdifficult,

asthesesystemsdonotinteroperatewellwitheachother.Foranyindividualengaginginhealthcaresystemsaroundtheworld—asapatient,aprovider,

aresearcher,anadministrator,oranITmanager—itisclearthatthesector

suffersfrompoorportabilityofdata.

2

Thisproblemstemsfromtechnological,regulatory,cultural,andoperationalparticularitiesthat,incombination,makethissectoruniquelychallengingtoeffectivelydigitalize.

Opensourcecommunitieshavedrivenmajornewtechnologicalshifts,fromthedigitizationofvehiclesto5GtelecommunicationstoAI,bybuildingthesharedinfrastructureforthosetransformations.Healthdatasystemsareinneedofasimilartransformationthatprioritizescollaboration,transparency,andinteroperability.Thesefacetsarefundamentaltotheopensourcevalueproposition,andyetmajorstakeholdersinhealthcareareabsentfrom

opensourcecommunities.LFResearchundertookthisresearchstudyto

understandopensourceadoptioninthisspace,whatchallengesexist,and

howtheLFcouldplayaroleinacceleratinginteroperable,digitalhealthcare

systems.Fromtheperspectiveofopensourcetechnologists,thisreport

capturesthereasonsforthelackofdatainteroperabilityinthehealthcare

sectorandtheimpactthatthishasoncareandresearch,highlightingthe

obstaclestoopensourceadoptionaswellasthewaysinwhichahealth-

specificopensourcearchitectureofstandardsandtechnologiescouldaddressthisissue.

Healthcareasauniqueandcomplexsector

Thehealthcaresectorhasanumberofparticularcharacteristicsthat,

combined,makeitunique.Fromamarketperspective,healthcareisnotatypicalindustrysectorduetoanumberoffactors:

3

Theirregular,non-fungible,andlifetimedemandforhealthcare:

Whenapatientdemandshealthcare,thistypicallycomesatunpredictable

timesandoftenbecomesurgent.ArunKumbhat,DirectorofGoToMarket,HR,andPRServicesforLibraSocialResearchFoundation,calledhealth“anon-

fungiblesubject,”which,whencombinedwithitsnonlinearityandurgency,

makesit“completelydifferentfromconsumergoods,direct-to-consumer

businesses,banking,finance,andinsurance.”Healsoexplainedhowapatientmayrequirefollow-uporpreemptivetreatmentsthroughouttheprogressionofadisease,whichnecessitatesa“continuouspersonalhealthrecord.”

Theethicalandmoralexpectationplacedonphysicians:Unlikemostothermarkets,therelationshipbetweenthepatientandtheproviderrestson

trustthattheproviderhasthebestinterestsofthepatientinmindduring

treatment.Thistrustlayerissignificantduetotheriskonthelineforthe

provider,wheretheirdecisionscouldmeanthedifferencebetweenlifeanddeath.4Thisplacesamoralandsocialobligationatthecenterofthismarket,whichaccordingtoaprofessorataEuropeanuniversityoftechnology,makesit“averyspecificsector…It’spublicorsocialpurposedriven.”

Thestrictandcomplexregulatorylandscape:Healthcareisahighlyregulatedsector.

4

AsAlexScammon,HeadofOpenSourceDevelopmentatG-Research,explained,theregulatorycharacteristicsofthemarketintroducesignificant

financialconsiderationsforthosedevelopinghealthcareproductsand

services.Henotedthatthehigh-risknatureofahealthcareproductincreasesthetimeandcostittakestogetapproval,and,assuch,“ittakesahuge

amountofresourcestogetthingspasttheregulatoryhurdles…Thatdoes

seemmoreunique[inhealthcare]thaninbigtech,forexample.”Although

theseregulationsareimportantfromasafetyperspective,somewerewrittenwithouttheinternetinmindorbeforesmartphones,suchasHIPAA,makingthemlessrelevantandpotentiallyobstructiveinthecurrentcontext.

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY7

Theseuniqueaspectsofthehealthcaremarketcontributetothecomplexityofhealthsystemsmanagement,wheremanydifferentstakeholdersin

highlydynamicsettingswithstrictgovernancemechanismsaccomplish

numerousanddiversetasksanddecisionprocesses.

56

AsDr.TonyShannon,HeadofDigitalServicesattheOfficeoftheGovernmentChiefInformationOfficerwithinthegovernmentofIreland,argued,“hospitalsprobablyare

themostcomplexorganizationalunitontheplanet—thereissomuchgoingoninatypicalhospital.”Anytransformations,technologicalorotherwise,

inahealthcaresystemmustconsiderasignificantnumberofstakeholdersandtheirinterests,theregulationsandrisksinplace,andtheuniquetrustrelationshipbetweenpatientandprovider.4

“Hospitalsprobablyarethemostcomplexorganizationalunitontheplanet.”

Dr.TonyShannonHeadofDigitalServices

GovernmentChiefInformationOfficerGovernmentofIreland

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY8

Thepeopleandprocessesbehinddigitalhealthtransformation

Giventhecomplexityofthehealthsector,itsdigital

transformationhasbeenaslowandfragmentedprocess.The

transitionfrompapertodigitalchartsisaclearexampleofthis.Aseniorconsultantataglobalconsultingfirm,explainedthattheimplementationofdigitalrecordsforthemostpart“didn’tbringthetool,thetechnology,intotheprocessofwhatthedoctoris

doing.Andsoit’sanextrastep,insteadofbeingintegratedintowhatthey’redoing.”Shewentontosay,“ifthetechnologyisn’tfollowingtheirpathway,they’renotgoingtouseit.”Thisusabilityissueiswellsummedupinthefactthatthereisanentire

industryofmedicalscribestoputhealthdataintothedigital

system.“Whatotherindustrywouldtolerateanindustryof

scribesworkingalongsideprofessionalstofeedtheinformationbeast?”Shannonlamented.

Shannon’sowninterpretationofthechallengewithdigital

transformationisduetothefactthatitcomesdowntoa

complexconvergenceofpeople,process,andtechnology,withhumanresourcesallsiloedwithinthreedomains:“Themedicalprofessionalsaretrainedintheclinicaldomainbutdon’t

understandtechnology;thetechnologistsaretrainedinthe

technicaldomainbutdon’tunderstandtheclinicaldomain;andthemanagementadministratorsaretrainedinmanagement

sciencebutdon’tunderstandeithertheclinicalprocessorthetechnicalstack.”Despitethiscomplexity,hearguedthatall

clinicaldomainscontaingenericpatternsintheirprocesses,

whicharekeytomoreeffectivelymanaginghealthdata.

IdentifyingthesegenericpatternshelpsinstitutionsalignandinteroperateITinfrastructureacrosshealthcareenvironments,butwithoutthisalignment,theproblemremainscomplexandsiloed

.78

Thisconvergenceoftechnology,people,andprocessechoed

acrosstheinterviews.Dr.PankajGupta,Non-ExecutiveDirectorofLibraSocialResearchFoundation,madeasimilarcomment,

arguingthat“inhealthcareIT,youneedthebusinessprocessesthataresemanticallystandardized,youneedphysicalandIT

infrastructurethatiswelldeveloped,youneedthehuman

resourcesthathavecrossoverskillsbetweenhealthcareand

technology.”AprofessorataEuropeanuniversityoftechnologyexplainedthedifficultyinensuringthatallthesedifferent

facetsworkwelltogether.“Mymedicalcolleagues,it’snottheir

businesstodealwithdataortechnology,youknow,theydon’t

havetime.So,youneednewpositionsorinterestedparties

whocandothat.Butit’sverydifficulttoconnectandtrust

otherpartnerswhomightbeproficientintechnologyordata

analytics.”Fromahealthresearchperspective,DavidBuckeridge,ProfessoratMcGillUniversity,concurred:“Thechallengeis,youneedalotofperspectivestomakesenseofthis,right?Youneedtheresearchethicsboardperspective,youneedasubstantive

analyticalresearchperspective,andyouneedtheITsecurity

perspective.Theyallhavetocometogetherandlookatthisissueandmakeasortofdeterminationaboutit.Andit’schallengingtogetthosepeopletogether,period,butalsotogetthemtogetherandhaveadiscussionaroundissueslikethis.”Similarly,Jared

Keller,anindependentdatasharingresearcherandconsultant,pointedoutthatthepropermanagementofahealthtechnologyrequirestechnicalpeople,lawyers,andbusinesspeople:“They’reneverallthesameperson,andit’shardtogetthemtotalkto

eachother.”

Understandingthesedifferentperspectivesisimportanttohavewell-functioning,effectivelygoverned,andsustainableprojects.Limitingthefocusoftheprojecttodefiningthetechnology

infrastructureignoresthepotentialinstitutionalorsocial

obstacles,whicharejustasimportanttoconsider.

9

Kellermadethepointthat,inhisexperience,governanceisalwaysthelastthingtoundergoconsideration.“Thereisatemptationtostartwiththetech,butthatcanleadpeopleastray.”Buckeridge

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY9

agreedthatgovernanceisoneofthemostsignificantobstaclestoimplementingdigitalhealthprojects,buthepointedout

thatitisalsooneofthehardestelementstogetright.“With

everythingI’vebuiltintermsofdataanalyticsinfrastructure,

thegovernanceisthehardestpart.Andifyoudon’tfigureitoutaheadoftime,it’sarealheadache,butatthesametime,ifyouwaittofigureitout,youmaynotgetanythingdone.”

Puttinggovernanceconsiderationsonthesamelevelastechnicalonesisparticularlychallenginginasectorwhereresources

arenotalwayswellfinancedorwellallocated.Asasenior

consultantataglobalconsultingfirmexplained,“thefactthat[theCanadian]healthcaresystemis—Iwon’tsaybankrupt,

butthebeltsarebeingtightened—theriskwiththatis,whenyou’redoingabigproject,thebudgetsgetcut.Andoftenthebudgetsgetcutinthenontechnicalstreams,whichischangemanagement,clinicaladoption,training,communication,andsoon.Andthat’swherethisindustryneedsitthemost.Andso,Ithinkthetighteningofbudgetsishamperingthesuccessofimplementations.”Withoutthesegovernanceandchangemanagementmechanismsinplace,digitalinnovationsinthehealthsectormaynothavetheabilitytoreallytakeoff.

“Oftenthebudgetsgetcutinthenontechnicalstreams,whichischangemanagement,clinicaladoption,training,communication,andsoon.Andthat’swherethisindustryneedsitthemost.Andso,Ithinkthetighteningofbudgetsishamperingthesuccessofimplementations.”

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY10

Innovationindigitalhealth

Theuniqueaspectsofthehealthcaremarketmakeita

challengingareaforinnovation.First,beingsocialpurposedrivenmeansthatitisnotasmuchofaprofit-driven

sector.AprofessorataEuropeanuniversityoftechnologyseesdigitalhealthinvestmentsfallingaroundtheworld,tyingittothewaythathealthcarerepresentsapublic

good:“Thereisalimittotheprofitsyoucanyieldfrom

digitalhealthcaresolutions.”PeterLee,HeadofMicrosoftResearch,agreedwiththissentiment,suggestingthat

thereisafundamentalethicaldifferencebetweenbig

techandhealthcare.Asheexplained,investorsinbigtechcompaniessuchasMicrosoftdemandsignificantrevenuegrowth,whichnohealthcarebusinessiscapableofdoing,reducingthemotivationtoinvestinthissector.Thisleavesbigtechcompaniestogothroughacycleofinvestingin

healthcareandthengivingup,accordingtoLee.

IanMcNicoll,CEOoffreshEHR,andaprofessorata

Europeanuniversityoftechnologybothputtheblameonthecompetenciesoftechcompanies.AsTheprofessor

stated,“healthcareistoofarfromtheircorecompetence.Theyjumpedintothehealthcarevaluechainwithoutthemedicalcompetence.”McNicollpointedoutthatthiscyclehappens“because[bigtech]isalldrivenbydataanalysisandnotbydirectcare…Theyhavealotofexperience

indataanalysis,butit’sdownstreamfromthefrontline

stuff.Andfrankly,becausethefrontlinestuffisjusttoodamnhard,theydon’twanttogetinvolvedinthat.”Thisleadstorestrictedinvestmentsinhealthcareinnovations,withconcernsaboutwhatitwilltakefortruedigital

transformationinthissector

.10

Ontheothersideofthespectrum,startupsalsohave

difficultiesenteringthemarket,astheyprovideaproductorservicethatisveryspecifictoaparticularproblemin

thehealthmarket.AprofessorataEuropeanuniversityoftechnologypointedoutthatwhenthemarketisasbigasitis,andtheproductonlyfitsaspecificneed,“ifyou

donotgetintothebiggerofferings,youmightsimplynotbeuseful.”Asaresult,thesectorsuffersfrom“pilotitis,”whereinnovativeinterventionshaveseensuccessonly

innicheandrestrictedcontexts,lackingtheabilityto

scaleupbeyondtheirpilotstage.9,

11

AsMcNicollargued,withoutanabilitytoplugtheirofferingintootherareas

ofthemarket,“it’sarealdragoninnovation—thenew

littlestartupswhocomein,they’rehavingtorebuild

thewholeinfrastructurethemselves.”Thestartup’s

particularproductorserviceisalsosubjecttocompliancerequirements,whichcanbeverycostlyandtime

consuming,suchastheHiTrustcertificationintheU.S

.12

Second,theslowpaceofinnovationisinpartduetothehigherrisksinhealthcare.Gawande(2012)noteshow

slowlynewprocessesandmedicinestrickledownin

medicinecomparedwithotherconsumerareas,where

thegapindiscoveryandimplementationis“appallingly”large

.13

The“failfastanditerate”conceptthatmovesmostconsumerinnovationsalongisnotpossibleinasector

wheretherisksaretoohightotolerateflaws.4Fromtheprocurementside,investmentininnovativetechnologiesislimited,andinstead,hospitalsandclinicstendto

procureproductsfromvendors.AsBuckeridgeposited,thisprocurementstrategy“isseenasawaytomitigateriskanddecreaserequirementsforskilledpersonnelatsomelevel.”NirajDalmia,PartnerinOmniaAIatDeloitteCanada,explainedtherisk-aversionfromapublicsectorperspective,stating,“Intheprivatesector,thereissomemoreappetitetotakerisk,especiallyinnon-healthcaresectorsduetothe‘failfastanditerate’benefits…The

publicsector,Iwouldsay,islookingforprecedent

andlookingforalittlebitmoresuretythatit’sbeensuccessful,it’sbeendone.AndIthink,fairenough—

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY11

thepublicsectorisspendingtaxdollarsonthese

softwares,andtheywanttoabsolutelymakesureit’s

goingtobesuccessful…It’safinebalancethat’stricky

toachieve,butithastobeobtainedtocounterthe

productivityparadoxinthehealthcaresectorthatcomeswithdigitalandinformationsystemimplementations.”Therearealsoimportantriskstoconsiderfromadata

privacyperspective.Asaseniorconsultantataglobalconsultingfirmexplained,herworkinriskadvisoryforherclientsis“aroundtheprivacyandcyberwithina

technologyplatform,whichisobviouslyveryimportant

fortechnologyimplementationswherethere’shealthinformationincludedinit.”Thestringentregulations

aroundprotectingdatamakeforrisk-aversetechnologyimplementations.

Theuniquecharacteristicsofthehealthcaremarket,

incombinationwiththecomplexityofthevarious

stakeholdersandtheirrelationshipstooneanother,hasmadedigitaltransformationofthesectorchallengingandrestricted.

“Intheprivatesector,thereissomemoreappetitetotakerisk,especiallyinnon-healthcaresectorsduetothe‘failfastanditerate’benefits…Thepublicsector,Iwouldsay,islookingforprecedentandlookingforalittlebitmoresuretythatit’sbeensuccessful,it’sbeendone.”

NirajDalmiaPartnerinOmniaAI atDeloitteCanada

ANOPENARCHITECTUREFORHEALTHDATAINTEROPERABILITY12

Nonstandardizeddataexchangeinfrastructure

Inthiscomplexregulatory,financial,technical,andgovernanceenvironment,animportantaspectofthehealthsystem

suffers—healthdata.Asthesectorhasdigitized,andthedata

availableindigitalformatshasgrownexponentially,these

differentfactorshavelockeddataintosilosthatbecome

challengingorevenimpossibletoaccessandshare.Asaseniorconsultantataglobalconsultingfirmplainlystated,“it’sreally

hardtobringdatatogethertoprovidevalueforeitherthe

patientortheclinician.”Researchersalsostrugglewithaccessingdataand,asaresult,facelimitationsintheirabilitytoproduce

outcomesfromreal-worldevidence

.14

“Wedon’thaveenough

datatodowhatwewanttodo.Wewouldlike100timesmore,

1,000timesmorethanwhatwehave,”explainedScammonin

referencetohisworkonanopensourcediagnosticmodelforhipdysplasia.

Thissiloedcontextmakesitverychallengingtotrackdataacrossapatient’sjourney.McNicollreferencedacancerpatient’s

journeyasanexample:Astheymovefromsymptomsto

diagnosistosurgerytotreatment,“there’salotofhandoverofinformationateverystep…andit’sarealchallengetofollowthepatientthroughtheirdata.”What’smore,thehealthdataitselfis“uniquelycomplex,wide,messy,andfractal,”McNicollpointedout.Heexplained,“it’sneveractuallybeenmapped.It’sall

what’sinclinicians’heads,it’sallinbitsofpaper.There’slotsof

confusionanddifferencesofmeaning;contextisvery,very

important.”NoahHarlan,SeniorAdvisoratFindhelp,explainedhowthiscomplexitygetsworsewhenincorporatingsocial

determinantsofhealth(SDOH)systems:“Therearetoomany

interlocki