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QResearch Professor Julia Hippisley-Cox PHCSG, Stratford 2014.

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Presentation on theme: "QResearch Professor Julia Hippisley-Cox PHCSG, Stratford 2014."— Presentation transcript:

1 QResearch Professor Julia Hippisley-Cox PHCSG, Stratford 2014

2 JHC roles Sessional GP in NottinghamSessional GP in Nottingham Professor epidemiology & GP Notts UniProfessor epidemiology & GP Notts Uni Director QResearchDirector QResearch Member PHSCG committeeMember PHSCG committee Member EMIS NUG committeeMember EMIS NUG committee Director ClinRisk LtdDirector ClinRisk Ltd Member Confidentiality Advisory GroupMember Confidentiality Advisory Group

3 Acknowledgements Contributing practicesContributing practices EMIS NUGEMIS NUG EMISEMIS University of NottinghamUniversity of Nottingham QResearch Advisory BoardQResearch Advisory Board ClinRisk (software)ClinRisk (software) Co-authors/researchersCo-authors/researchers

4 Overview QResearchQResearch QData Linkage ProjectQData Linkage Project Risk prediction toolsRisk prediction tools QSurveillanceQSurveillance QFeedbackQFeedback

5 QResearch – what is it? Patient level pseudonymised databasePatient level pseudonymised database Not for profit partnership UoN & EMISNot for profit partnership UoN & EMIS Started in 2002Started in 2002 Ethical researchEthical research EMIS systems used in > 55% of UKEMIS systems used in > 55% of UK First research database from EMISFirst research database from EMIS Pilot including 40 practice for 1 yearPilot including 40 practice for 1 year Currently >900 general practicesCurrently >900 general practices

6 QResearch – why set up? David Stables co-founder of EMIS (1987) & QResearch (2002)David Stables co-founder of EMIS (1987) & QResearch (2002) Designed emis systems to facilitate research to improve health care & help GPs make better diagnoses & Rx decisionsDesigned emis systems to facilitate research to improve health care & help GPs make better diagnoses & Rx decisions UoN strong track record using MIQUEST to extract GP data for academic researchUoN strong track record using MIQUEST to extract GP data for academic research MIQUEST not working & not scalableMIQUEST not working & not scalable Both interested in ethical researchBoth interested in ethical research

7 QResearch Governance Strategic decisions taken by Manageemnt Board representing EMIS & UoNStrategic decisions taken by Manageemnt Board representing EMIS & UoN Dr Shaun O’Hanlon (ex-GP Chief Medical officer)Dr Shaun O’Hanlon (ex-GP Chief Medical officer) JHC (current GP & academic)JHC (current GP & academic) Scientific board approves access to dataScientific board approves access to data Advisory board sets policy & oversees operation & governance databaseAdvisory board sets policy & oversees operation & governance database Annual review by RECAnnual review by REC Assessment by ECC/CAGAssessment by ECC/CAG

8 QResearch Advisory ToR Oversee general workingOversee general working Oversee comms with & benefits to practicesOversee comms with & benefits to practices Agree criteria & principles of accessAgree criteria & principles of access Oversee application of criteriaOversee application of criteria Review any changes to context, content or data usageReview any changes to context, content or data usage Advise on policy for accessAdvise on policy for access Advise on professional issuesAdvise on professional issues

9 QResearch Advisory Members EMIS NUGEMIS NUG Patient representationPatient representation RCGPRCGP BMA/GPCBMA/GPC Society for Academic Primary CareSociety for Academic Primary Care UoNUoN EMISEMIS

10 QResearch - what used for? Solely used for research projectsSolely used for research projects Generation new knowledgeGeneration new knowledge Testing or generating hypothesesTesting or generating hypotheses Intended for publication in academic journalIntended for publication in academic journal Subject to rigorous peer reviewSubject to rigorous peer review All projects must be publishedAll projects must be published

11 QResearch CANNOT be used for Non-research projectsNon-research projects Identifying patients or practicesIdentifying patients or practices Clinical trialsClinical trials Delivering interventionsDelivering interventions Political purposesPolitical purposes Projects which wont be publishedProjects which wont be published

12 QResearch practice engagement Practices need to opt in by activating sharing agreement in EMIS.Practices need to opt in by activating sharing agreement in EMIS. Can be de-activated at any timeCan be de-activated at any time Individual patients can opt out or opt inIndividual patients can opt out or opt in Just re-consented practices with move to EMIS WebJust re-consented practices with move to EMIS Web agreements-qsurveillance-and-qresearchhttp://emisnug.org.uk/video/enabling-sharing- agreements-qsurveillance-and-qresearchhttp://emisnug.org.uk/video/enabling-sharing- agreements-qsurveillance-and-qresearchhttp://emisnug.org.uk/video/enabling-sharing- agreements-qsurveillance-and-qresearch

13 QResearch benefits Contributing to bona fide research by sharing data safelyContributing to bona fide research by sharing data safely Results from all research publically available to maximise public benefitResults from all research publically available to maximise public benefit Publications herePublications herehere Includes disease epidemiology, drug safety, health inequalitiesIncludes disease epidemiology, drug safety, health inequalities Helps development of tools & utilities in clinical systemsHelps development of tools & utilities in clinical systems

14 QResearch–who can access? Lead researchers based in UK universitiesLead researchers based in UK universities Track record undertaking researchTrack record undertaking research Team must include a GPTeam must include a GP Freedom & intent to publishFreedom & intent to publish Clinical custodian signs declarationClinical custodian signs declaration Undertakes not to try to identify patientsUndertakes not to try to identify patients Data stored securely on site in universityData stored securely on site in university Signed licence agreementSigned licence agreement

15 Peer review projects Clear research question or hypothesis likely to lead to generalisable finding?Clear research question or hypothesis likely to lead to generalisable finding? Output suitable for publication?Output suitable for publication? Does team have track record of researchDoes team have track record of research QResearch appropriate database?QResearch appropriate database? Are methods appropriate?Are methods appropriate? Any risks to ethical position including identification of patients or practices?Any risks to ethical position including identification of patients or practices?

16 QResearch what GP data included? Pseudonymised NHS number; year birthPseudonymised NHS number; year birth Only coded dataOnly coded data Clinical events, values, diagnosesClinical events, values, diagnoses PrescriptionsPrescriptions Consultations, referralsConsultations, referrals No strong identifiersNo strong identifiers No free text or attachmentsNo free text or attachments No confidential patients or data items or data from patients who have opted outNo confidential patients or data items or data from patients who have opted out

17 QResearch: what data be accessed? Samples of database not whole databaseSamples of database not whole database Up to 100,000 GP recordsUp to 100,000 GP records Studies needing > 100K done on siteStudies needing > 100K done on site Studies needing linked data done on siteStudies needing linked data done on site Remote monitored access to prepared dataRemote monitored access to prepared data Access to development datasets to prepare code which are run on siteAccess to development datasets to prepare code which are run on site Only use for specified projectOnly use for specified project No onward disclosure/re-useNo onward disclosure/re-use

18 QResearch–how researchers specify data requested? Application form on webApplication form on web Qweb query tools to define data requirementsQweb query tools to define data requirements Includes code libraries forIncludes code libraries for Read codes/snomedRead codes/snomed Drug codesDrug codes ICD9 & 10ICD9 & 10 OPCS codesOPCS codes Defining study cohorts inclusion/exclusionDefining study cohorts inclusion/exclusion

19 QResearch safeguards Clinician leadClinician lead Strong IG framework which limits purposes (research) and users (researchers)Strong IG framework which limits purposes (research) and users (researchers) Strong oversight by advisory boardStrong oversight by advisory board No strong identifiersNo strong identifiers Pseudonymisation-at-sourcePseudonymisation-at-source Minimisation of variables & sample sizeMinimisation of variables & sample size Use of onsite analysis for large samples/linked dataUse of onsite analysis for large samples/linked data

20 QResearch Data Linkage Project

21 QResearch database already linked toQResearch database already linked to deprivation datadeprivation data cause of death datacause of death data Very useful for researchVery useful for research better definition & capture of outcomesbetter definition & capture of outcomes Health inequality analysisHealth inequality analysis Improved performance of QRISK and similar scoresImproved performance of QRISK and similar scores

22 QResearch data linkage project Inpatient dataInpatient data Outpatient dataOutpatient data MaternityMaternity Critical careCritical care Cancer registrationCancer registration Mortality registrationMortality registration

23 New approach pseudonymisation Need approach which doesn’t extract identifiable data but still allows linkageNeed approach which doesn’t extract identifiable data but still allows linkage Legal, ethical and NIGB approvalsLegal, ethical and NIGB approvals Secure, ScalableSecure, Scalable Reliable, AffordableReliable, Affordable Generates ID which are Unique to ProjectGenerates ID which are Unique to Project Applied within the heart of the clinical systemApplied within the heart of the clinical system Minimise disclosureMinimise disclosure

24 Pseudonymisation: method Scrambles NHS number BEFORE extraction from clinical systemScrambles NHS number BEFORE extraction from clinical system Takes NHS number + project specific encrypted ‘salt code’Takes NHS number + project specific encrypted ‘salt code’ One way hashing algorithm (SHA2-256)One way hashing algorithm (SHA2-256) Cant be reversed engineeredCant be reversed engineered Applied twice in to separate locations before data leaves EMISApplied twice in to separate locations before data leaves EMIS Apply identical software to external datasetApply identical software to external dataset Allows two pseudonymised datasets to be linkedAllows two pseudonymised datasets to be linked

25 Openpseudonymiser.org Website has.NET and JAVA implementationWebsite has.NET and JAVA implementation Desk top batch processorDesk top batch processor Libraries for integrationLibraries for integration Test harnessTest harness DocumentationDocumentation Key serverKey server ScreencastsScreencastsScreencasts Used by EMIS, TPP, HSCIC, ONS + various other CCGs/CSU/companiesUsed by EMIS, TPP, HSCIC, ONS + various other CCGs/CSU/companies

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28  Individual assessment  Who is most at risk of current or preventable disease?  Who is likely to benefit from interventions?  What is the balance of risks and benefits for my patient?  Enable informed consent and shared decisions  Population risk stratification  Identification of rank ordered list of patients for recall or reassurance  GP systems integration  Allow updates tool over time, audit of impact on services and outcomes

29  Major cause morbidity & mortality  Represents real clinical need  Related intervention which can be targeted  Related to national priorities (ideally)  Necessary data in clinical record  All then available as open & closed source software & for integration into clinical systems Embargoed until publication

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31 QScores embedded EMIS INPS SystmOne Microtest Pharmacies -Boots Telehealth Occupational Health Jaguar Morrison’s National Grid!

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34 ALREADY IN EMIS WEB  QRISk2  QDiabetes  QStroke  QFracture  QAdmissions IN PLANNING PHASES  QCancer (release Nov 14)  QKidney  QThrombosis  QBleed  QIntervention

35  calculation-template-emis-web calculation-template-emis-web  calculation-eg-qrisk-group-patients-batch- add calculation-eg-qrisk-group-patients-batch- add EMIS NUG screen casts courtesy of Dr Geoff Schrecker & EMIS NUG

36 QSurveillance

37 QSurveillance Real time surveillance systemReal time surveillance system Daily data from 4000 EMIS practicesDaily data from 4000 EMIS practices 30 million patients30 million patients Infectious diseasesInfectious diseases Vaccine uptakeVaccine uptake Only aggregated count data by age/sexOnly aggregated count data by age/sex Alerts to and helps manage pandemicAlerts to and helps manage pandemic

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39 Largest real time surveillance system worldwideLargest real time surveillance system worldwide Used to monitor seasonal outbreaks of disease e.g. influenza, norovirusUsed to monitor seasonal outbreaks of disease e.g. influenza, norovirus Real time response to public health incidentsReal time response to public health incidents Compliments NHS Direct, RCGP, National Pandemic ServiceCompliments NHS Direct, RCGP, National Pandemic Service Influenza virus particles Flooding, Oxfordshire, 2007 © HPA, Jane Bradley QSurveillance real-time surveillance

40 QSurveillance Core part of the Emergency Response. Reports toCore part of the Emergency Response. Reports to Public health England Department of Health CMO’s Office Cobra WHO Academic Modellers Used to make national and local policy decisionsUsed to make national and local policy decisions Also used for reassuranceAlso used for reassurance

41 Examples: Ricin and London Bombings

42 Examples:Heatwaves

43 Examples: Buncefield 2005

44 Examples: Avon Floods 2007

45 September 2009 Examples: Pandemic 2009

46 QFeedback

47 QFeedback: update Interactive tool based on QSurveillanceInteractive tool based on QSurveillance Allows practices to view own data comparedAllows practices to view own data compared PCT, SHA, UKPCT, SHA, UK Similar practicesSimilar practices Graphs, Maps, Export data to excelGraphs, Maps, Export data to excel Deployed to 4000 EMIS practice since 2011Deployed to 4000 EMIS practice since 2011 Final of E Heath innovation awardsFinal of E Heath innovation awards

48 QFeedback dashboard

49 Example maps

50 General application


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