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Secondary Use of Personal Data Recent UK Developments Richard Kemp, Kemp IT Law 20 th October 2017 Presentation to ITECHLAW 2017 European Conference, Stockholm

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SecondaryUseofPersonalDataRecentUKDevelopments

RichardKemp,KempITLaw20th October2017

PresentationtoITECHLAW2017EuropeanConference,Stockholm

framingthesecondaryprocessingdebate

GDPRArt5(1)(b)• generally,researchandothersecondaryprocessingneedtheirownlawfulprocessingbasis• personaldatamustbecollectedfor[primary] specified,explicitandlegitimatepurposes• nottobefurther[secondarily]processedincompatiblywiththoseprimarypurposes;

• butMemberStatescanalterthatbysettingoutappropriatesafeguardsunderArt89(1)• furtherprocessingfor‘archivingpurposesinthepublicinterest,scientificorhistoricalresearchpurposesorstatisticalpurposes’‘subjecttoappropriatesafeguards’isOK;• datacontrollerscoulddoresearchwithoutfurtherconsentwhereMemberStateshadsetout‘appropriatesafeguards’

DeepMind/RoyalFree– aliveexamplefromtheUK

• Jan2014:GoogleacquiresLondon-basedAIdeveloperDeepMindTechnologies

• Sept2015:• RoyalFreeisdeveloping‘Streams’,akidneyinjurydetection,diagnosis&preventionapp• InformationSharingAgreement(ISA)signedforDeepMindtoprocesspersonaldataof1.6mRoyalFreepatientsforclinicalsafetytestingof‘Streams’• PDissentnotsubjecttopseudonymisationasRoyalFreesbelievethedataisbeingprocessedwith‘impliedpatientconsent’forthepurposeof‘directpatientcare’

DeepMind/RoyalFree– aliveexamplefromtheUK

• Nov2015:datastreamingstarts

• April2016:Sept2015ISAobtainedviaFOIrequestandpublished

• May2016:ICOopensinvestigation

• Feb2017:Streamsmobileappgoeslive

• July2017:ICOpublishesfindingsandtheundertakingsitisseekingfromRoyalFree

DeepMind/RoyalFree– ICO’s3July2017decision

• Principle1:fairandlawfulprocessingØ TheprocessingofpatientrecordsbyDeepMindsignificantlydiffersfromwhatdatasubjectsmightreasonablyhaveexpectedtohappentotheirdatawhenpresentingattheRoyalFreefortreatment.”

Ø Thesecondaryprocessingdidnotconstitute‘directpatientcare’

Ø Therewasnoimpliedconsent,andDeepMind’sprocessingwasinbreachofthedutyofconfidencethatRoyalFreeoweditspatients

• Principle3:adequate,relevantandnotexcessiveØ itwasnot“necessaryandproportionatetoprocess1.6mpatientrecordstotesttheapp’sclinicalsafety.”

DeepMind/RoyalFree– ICO’s3July2017decision

• Principle6: compliancewithdatasubjects’rightsØ “ifpatientsdidnotknowthattheirinformationwouldbeusedinthiswaytheycouldnottakestepstoobject”

• Principle7– appropriatetechnicalandorganisationalmeasuresØAgreement“didnotcontainenoughdetailtoensurethatonlytheminimalpossibledatawouldbeaccessibletoDeepMind.”

Ø “…processingofsuchalargevolumeofrecordscontainingsensitivehealthdatawasnotsubjecttoafullprivacyimpactassessmentaheadoftheproject”

“RoyalFreesharedthedataonthebasisof‘impliedconsentfordirectcare’.Icametotheviewthattheyhadnotusedanappropriatelegalbasisfordatasharing.Thislegalbasiscannotbeusedtodeveloportestnewtechnology,eveniftheintendedendresultistousethattechnologytoprovidecare.”

Wecanearnpublicsupportfortheuseofdataininnovation,by“adheringtoexplicitandtransparentprinciplesofgoodpractice”to“reassurepatientsandthosetreatingthemthatconfidentialityissafeguarded”.Thepublicrightlyexpectsnothingless.”

DeepMind- theUKNationalDataGuardian’sview

• wherethegovernmentisthemainpayer– liketheUKfortheNHS- whyshouldn’titbeallowedtouseaggregatedpatientdatatoimprovecareforothers?

• whowouldn’twanttoseeprimarycareproviderswithatooltoidentifypatientsatriskofkidneydamage?

• anyAItool(inanyindustry)implieshugeamountsofdatatotrainthemachinelearningmodel/algorithm

DeepMindcasepointsuppolicyaimsintension

• whatusecanthecareproviderasdatacontrollermakeofthedataunderGDPR?• ispatientconsentalwaysneeded?• whenisitnotneeded?• whenobtained,whatuseisconsentedto/permitted?

• who(includingcommercialentities)canuse/derivebenefitfromthatdata?• specialistcommercialentitiescandothisbetterthanthecareprovider• IntheUSA,AIprovidersareworkingwithcareproviderstobuildalgorithmsbasedonlargepatientrecordsdatasets

• howdowerebuildtrustinAI-basedhealthcareresearchintheUK?

DeepMindcasepointsuppolicyaimsintension

wayforward(1):RoyalFreeundertakingscompliance

RoyalFreehasagreedtogivefiveundertakingsrequestedbyICO:[1] within2months,tocarryoutaPIAwithin1monthofthePIAtoshowhow[2] the‘fair&lawfulprocessing’and[3] theSchedule3sensitiveinformationprocessingrequirementsaremet,and[4] itwillcomplywithitsdutyofconfidencetopatients[5] within3monthsoftheundertakingtocommissionacomplianceaudit

RoyalFreewebsite:“Wehavesigneduptodeliverallofandhavestartedworkingontheundertakings– includingdeliveringathirdprivacyimpactassessmentofourworkwithDeepMind,continuingtobeopenandtransparentabouthowweusepatientinformationandconductingathirdpartyauditofourcurrentprocessingarrangementswithDeepMind.”• watchthisspace

wayforward(2):ICOpaperof04.09.17

• v1.0‘BigDataandDataProtection’paperpublishedin2014• v2.0publishedApril2017• v2.2publishedon4September2017

sixkeyrecommendations:1.doesthebigdataanalyticsneedpersonaldatatobeprocessed?2.providemeaningfulicons,notificationsandprivacynotices3. embedaPIAframeworkintobigdataprocessingactivities4. implementaprivacybydesignapproach5.developethicalprinciplestoreinforcedataprotectionprinciples6.developauditablemachinelearningalgorithms

wayforward(3):Art89(1)&whatMemberStatescando

IntheUK,theWellcomeTrusthasdonesignificantworkinthisarea

• “MemberStatesshouldensuretheirlegalframeworkissufficienttoimplementArticle89andfacilitatescientificresearch”• “Passingspecificlegislationislikelytoprovidetheclearestandmostcertainframeworkforresearchers”• “WeencourageMemberStatestoworktogethertopromotecompatibilitybetweennationalapproacheswherepossibletofacilitatecross-borderresearch”

(WellcomeTrustDataProtectionRegulationSite)

RichardKemp

[email protected]+442030111670

thankyou