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RDAHealthDataIGEdwinMorley-Fletcher(co-chair),Lynkeus
RDAmeetsNordicresearchers,14June2017,Göteborg,Sweden
BriefHistory
• BoFs @RDAP6inParisand@RDAP7inTokyo• HealthDataInterestGroupestablished@RDAP8inDenver(September2016) #over100members
• Secondmeetingat@RDAP9withfocusonDataProtection(GDPR)andHealthDataMappinghttps://docs.google.com/spreadsheets/d/1WUGU1McZH3jo5x7g2FCMsvPdF5DKUHKL6AqJWBUamB0/edit#gid=1612672872
• BOFonBlockchain forHealth@RDAP9inBarcelona(April2017),tobeheldagain@RDAP10,inviewofestablishingadedicatedWorkingGroup.
• Quarterlyconfcalls
• Dataaccessandprotection• sharingbestpracticeonpseudonymisation andanonymisation• developingmodelsforconsentthatprotectpatientswhileenablingresearch• providingaforumfordiscussing,explainingandrespondingtodataprotectionregulation• secureopeningupofdatatofacilitateresearch
• Data-basedhealthcareforpersonalised medicine• diseasesignaturesidentification• stratificationofpatientgroups• patient-specificsimulationandprediction
• DataliteracyinHealthcare• providingmaterialsforeducationofhealthcareprofessionalsonuseandmisuseofdata
• Patientdatarepositories/patient-centricdatagatheringsystems• In-silicodrugdevelopmentandclinicaltrials
• representinginterestsofthedata-basedhealthcarecommunitytopolicymakers• identifyinganddiscussingrelatedchallenges,interdisciplinaryresearchneedsandpotentialroadmaps.
• Blockchainapplicationstohealthdata
Userscenarios/focusareas
• Clinicians(tousedatatechnologytoimprovepractice)
• Biomedicalresearchers(usinganalyticaltechniques)• HealthcareDataAnalytics(withdatamining,machinelearning,physiologicalmodellingandimage
processingexpertise)
• HPCanddistributedcomputingexperts• Policy-makersforHealthcare• Healthbioinformaticslegalexperts• Healthcareadministrators- HealthMaintenanceOrgs• Pharmaceuticalindustryresearchersandmanufacturers• Medicalequipmentresearchersandmanufacturers• Insilicomodelling,testingandclinicaltrialexperts• BlockchainApplicationsinHealth
Targetparticipationareas
LookingforwardtoanRDAWGfocusingonBlockchaininHealth?
• TheHD-IGissponsoringtheideaofestablishingaWGfocusingonBlockchaininhealthdatawiththeaimofdebatingindepththepotentialofsuchasystemandwhethertheblockchaincanensurecompliancewithadvanceddataprotectionrequirements(suchasthosedefined,forinstance,bytheEUGeneralDataProtectionRegulation– GDPR),yetmakingithappenseamlesslyandefficiently,atscale.
• Duetoitsscope,thenext(second)preliminaryBoF meetingideallyfostersrelationstoanumberofRDAWGsandIGsthatmaybeabletocontributewiththeirresultsto,orbenefitfrom,theproposedfutureWG’sactivities.
BlockchainHype?
TheEconomist (2015),“Thepromiseoftheblockchain:Thetrustmachine”,October 31st - HealthITCentral– May15th,2017
BlockchainHype?TheEconomist
• TheEconomistwentsofarastostatethat,atfirstsight,“thenotionofsharedpublicledgersmaynotsoundrevolutionaryorsexy.Neitherdiddouble-entrybook-keepingorjoint-stockcompanies.Yet,likethem,theblockchainisanapparentlymundaneprocessthathasthepotentialtotransformhowpeopleandbusinessescooperate.[…]Arealisationthatsystemswithoutcentralisedrecord-keepingcanbejustastrustworthyasthosethathavethemmaybringradicalchange.[…]Aworldwithrecord-keepingmathematicallyimmunetomanipulationwouldhavemanybenefits.”
BlockchainHype?IBM• “Blockchainpromisestoputprivacyandcontrolofdatabackinthehandsofcitizens.Trustandintegritywillbeestablishedwithoutrelianceonthird-partyintermediaries.IBMbelievesblockchainisanextraordinarilyimportantphenomenonwiththepotentialtotransformindustriesandupendbusinessmodels”.
• “Inhealthcare,newresearchisseekingtoapplyblockchain’sdistributedledgeranddecentralizeddatabasesolutionstothecriticalissuesofinteroperability,security,recorduniversality,andmore.Intriguingusesinotherindustriesarebeingextendedtohealthcare,suchasextendingblockchain’ssmartcontractstoprovidernetworkmanagementorconnectingmyriadmedicaldevicesthroughcommon,blockchain-enabledsystemsofinformationrelationships.Whiletechnicalconsensusonadistributedledgerforhealthcarehasyettoemerge,withdebateongoingregardingscalability,security,andregulatorycompliance,blockchaintechnologyandencryptionwill driveinnovationinhealthcareservicesandadministration”
IBMGlobalBusinessServicesPublicSectorTeam(2016),UseofBlockchain inHealth ITandHealth-related Research,proposal submitted onAugust8,2016,totheIdeation Challengelaunched bytheOfficeoftheNationalCoordinatorforHealth InformationTechnologyintheUSA.
BlockchainHype?Deloitte
• HealthcarepainpointsandpotentialblockchainsolutionsweresimilarlyindicatedbyIBMaswellasbyDeloitte,inwhoseWhitePaper,however,theyappearedtobemoreconvenientlysummarisedasshowninthenexttable,takenfrom:
Deloitte(2016),Blockchain:OpportunitiesforHealthCare,WhitePaperdevelopedinresponsetotheDepartmentofHealthandHumanServices’OfficeoftheNationalCoordinatorforHealthInformationTechnology(ONC)ideationchallengeon“TheUseofBlockchaininHealthITandHealth-RelatedResearch”.
WhoisRonaldCoase?
• RonaldCoase(1910-2013):NobelLaureateforEconomicson1991Morethan50yearsafterhisdisruptiveTheNatureoftheFirm(1937),and30yearsafterTheProblemofSocialCosts(1960).
• ItisnowpossibletoreverseRonaldCoase’sTransactionCosts.
• WhatInternetdidtotransactioncostsregardinginformation,blockchaincandoregardingtrust.
AssumptionsandExpectations
• Publicandprivateinitiatives,bothinEuropeandintheUS,arecurrentlyaddressingthepotentialofapplyingtheblockchainapproachtohealthdata.
• Thisisrelatedtogreatgeneralexpectations(“whatInternetdidtotransactioncostsregardinginformation,blockchaincandoregardingtrust”)andtotheassumptionthatwhatisneededforhealthdataisaDistributedEmpowermentsystem,providingsecureaccessfromanywhereonanydevice.
• Thereistheneedtodevelopnewmechanismsoftrustandofdirect,value-basedrelationshipsbetweenpeople,hospitals,researchcentres,andbusinesses,leadingtoanopenbiomedicalinformationnetworkcentredontheconnectionbetweenorganisationsandtheindividual.
BlockchainLedger
• ADistributedEmpowermentsystemhavingtheBlockchainledgerassecure,non-editablerecord,wherealltransactionsareconfirmedbythenetworkasentriesformingblocksoftransactions,andthewholenetworkmonitorsthelegitimacyofeachtransaction,guaranteeingdistributedcontrol.
SmartContracts
• TheblockchainisexpectedtobebasedonportfoliosofSmartContracts.• SmartContractsaretheexecutablepiecesofcode,storedontheblockchainforfutureexecution.
• Thesebindpeopleandtransactionstospecificactionsandoutcomesandrequirenofurtherdirecthumaninvolvementafterthesmartcontracthasbeenmadeapartofthedistributedledger(whichiswhatmakesthesecontracts"smart"orself-enacting).
HD-IGGOALSwithregardtoPrivacy,Security,andBlockchain
• Profileandclassifysensitivedatabasedontheirinformationalandeconomicvalue• Assessthemostsuitableandrobustde-identification andencryption technologiesneededtosecuredifferenttypesofinformation
• Allowhavingadvancedanalyticsrunningonanonymisedorpseudonymiseddata• EvaluatetheoverallsecurityofMHMDmulti-modulararchitecturebytestingitthroughdedicatedself-hacking simulationsandpublichackingchallenges
• Analyseusers’behaviouralpatternsalongsideethicalandculturalorientations,toidentifyhiddendynamicsintheinteractionsbetweenhumansandcomplexinformationservices
• Improvethedesignofdata-drivenplatforms• Fosterthedevelopmentofaninformationmarketplace,inwhichbothindividualsandclinicalinstitutionswillbeabletoexertcontrolontheirhealthdataandleveragetheirvalue
StrategicallyrelyingontheongoingMyHealthMyData EU-fundedprojectand
onitsFourLeadingHospitals
• Following theexample ofroutinedatainflow bytheOPBGPCDR,andtheinteroperabilitysystemestablished inCardioproofandMD-Paedigree
• Taking into accounttheless restricted dataprocessingallowed bytheGDPRwhen it is aimedat scientific research,andtheproviso that thedataprotection legislation does not apply toduly anonymised data
• Guaranteeing that all health andpersonaldatawill:• Be duly anonymised before been uploaded on MHMD Infostructure• Be processed, should the use of partial anonymisation techniques be indicated for the intended use of data, on the
ground of a Dynamic Consent provided by the data subjects.
• Exploringdifferentopendataimplementationapproaches• Evaluating,totheextentpermittedbynationalandEuropeanregulations,solutionsprovidingsomeconcreteacknowledgmentofdatavalue
Twolayersofdataflow
• A semi-automated data profiling and cleaning engine that:o Ensuresandassessesdataqualityo Guaranteesthemostappropriatede-identificationorencryptionmechanism,accordingtoeachtypeofdataormodality
• A privacy preserving and security layer that combines:o Aprivacypreservingdatapublishingengine(providinganonymisation tools)o Aprivacypreservingcomplexdataflowexecutionengine(i.e.,differentialprivacy,SMPC,homomorphicencryption)
• Thejointgoalis toallow:o Classifyingmedicaldataandcorrespondentsecurityandprivacyprovisionsineachcategoryo Assessingrelevance,sensitivity,riskfortheindividualandpracticalvalueo Selectingthemostappropriatesecurityandprivacypreservingtechniqueineachcase
InstitutionalDataprovidersrequirements
AllMHMDhospitalscommitto:• Acquireaservertohostthelocaldatacatalogueandcontributetoblockchaintransactions• HavetheirresearchdataindexedusingDOIs• IntegratetheserverintheirHealthcareInformationSystem(HIS)(thusallowinglaterproduction)• Consenttobeconsultedonfuturecohortrequests• EnsureVeracity,Validity&Integrityoftheirdata• Onlymakepseudonymousdataavailable• Handletheresponsibilityofpatientidentitymappingwithlocalanonymousdata
IndividualMHMDUserEntitlements(1)
• Aggregatepersonaldatafromdisparatesources:• Socialmediaaccounts,clinicaldatarepositories,personaldrives,wearabledevices,etc.,inasingle,user-ownedaccount(PDA).
• Assigndataaccessrights• Withinanefficientworkflow,basedonstakeholders’permissionsandaddressingsimplequestions:
o Type ofdatarequestedo Intended useo Datathatwillberetainedo Datathatwillbesharedwith3rd partiesandintendeduseo ImplementationoftheRighttobeforgotten.
IndividualMHMDUserEntitlements(2)
• Stayinformedof,andenquiryon,relevantdatatransactionsafteraccesshasbeengranted
• Beabletorevokedataaccessrights,orextendthem• Beabletoreceiverequestsfromstakeholdersfordataaccess
permissions.• Requestsmayalsoincludeincentivesofferedbystakeholdersinexchangefordata
• Definepost-mortemusageordonationofpersonaldata
Blockchain:norecoursetoTrustedThirdParty
• Applying theblockchain approach tohealth dataguarantees secure accessfromanywhere onany device
• TheBlockchainledgeristhesecure,non-editablerecordwhere:o Alltransactionsareconfirmed bythenetworkas entriesforming blocks oftransactionso Thewholenetworkmonitorsthelegitimacyofeachtransaction,guaranteeingadistributedcontrolsystem
• Eachstakeholdercanenactanonymoustransactionsthroughtheledger:o Employing publickey encryption foridentifying owners intheledger,recording onehalf ofthepublickey pairo Only theperson oristitution holdingthecorresponding privatekey candecidewhat happens next totheir data
• Eachstakeholderisequippedwitha‘wallet’containing:o Anencryptedidentifiero His/herDynamicConsento His/herdataaccesspolicyfile
DOISystem:Handle.net
• TheHandleSystemisacomprehensivesystemchosenforassigning,managing,andresolvingpersistentidentifiersfordigitalobjectsandotherresourcesontheInternet
• Theprotocolsenableadistributedcomputersystemtostoreidentifiersofdigitalresourcesandresolvethoseidentifiersintotheinformationnecessarytolocateandaccesstheresources
• Thehandle.net8.1softwareinclude:o aRESTfulJSON-basedHTTPAPIo abrowser-basedadmincliento anextensionframeworkallowingJavaServletappso authenticationusinghandleidentitieswithoutspecificindexesomulti-primaryreplicationo Securityimprovements
AppliedAnalytics:ProbabilisticModelingforstatisticalsimulation
Modelling
Dependency Analysis
Inference