Secondary Use of General Practice Patient Data

1. Secondary Use of General Practice Patient Data Dr Ralph Sullivan National Clinical Lead for Primary Care

2. NewHSC IC Open Data GPES& EMIS Information governance GPESE2E MiQuest GPESTime-table 2

3. Current Information Centre New non-departmental public body April 2013 HSC IC SHA informatics NHS CfH

4. Health and Social Care Information Centre To be the national source of Health and Social care information for improving patient care and outcomes How: Better Access To make data widely available, for use by third parties, and to meet the needs of a multiplicity of customers National Data Repository To be the nationalrepository for data across health care, public health and adult social care Enable data linkage within a strong information governance framework Data Collectionand Quality To have leadresponsibilityfor data collectionand assuring the dataquality of those returns

5. GPES General Practice Extraction Service

6. EMIS’ Solution for GPES CentralReporting Service EMIScentralhosting services C Data Sharing Agreement C LV PCS Extractserver GPES C C GPES IGPrinciples C Fam Service or Web 18

7. GPES A little GPES revision?Information governance definitions

8. Patient consent to data disclosure Secondary Use Patient care Data is about identifiable patients Data is effectively anonymised

9. Patient consent to data disclosure Explicit consent Implied consent Patient identifiable Secondary uses Patient identifiable Patient care Effectively anonymised Patient care Effectively anonymised Secondary uses Non-personal data – cannot refuse an FOI Act request

10. Secondary uses of identifiable data Express patient consent Permissive law Mandating law NHS Act 2006, section 251 HSC Act 2012? Patient identifiable Secondary uses Example: Court order

11. Permissive laws – patients that dissent New read codes to record patients’ dissent from data disclosure Dissent from secondary use of GP patient identifiable data 9Nu0. XaZ89 Dissent withdrawn second use of GP patient identifiable data 9Nu1. XaZ8A 10

12. GPES A little more GPES revision?The “end-to-end” process

13. GPESBusinessUnit Enquirer Create data specand comms GPSSs Develops queries and notifies practices Practicedatabase Send toGPSSs IndependentAdvisoryGroup Extraction Process Interpretand define the customer requirement Standard Info Gov assessment Standard Info Gov assessment

14. GP System Supplierdevelops queries and notifies practices Practicereceivesnotification Enquirer Runs extract Decides to participate Decides to release data Practice consent to data disclosure • GP controls data extraction • Set preferences • Set specific extract decisions • Run ad hoc GPES queries

23. GPES Timeline EMIS first mailing IAG first meeting EMIS second mailing EMIS/GPES contract Practice awareness and training QOF first extract Dec 2011 Mar 2012 Sept2012 April 2013

24. Membership Chair Lay member GP BMA Lay member GP RCGP Laymember GPPHCSG Ethicist Inform PHCSG Secretariat (HSC IC) Independent Advisory Group Recommendation options Further consideration by the IC or significant changes Proceed(subject to minor changes) Proceed(subject to further approvals) Proceed 3

25. GPES When will GPES arrive?Our timetable

26. GPES Timeline EMIS first mailing IAG first meeting EMIS second mailing EMIS/GPES contract Practice awareness and training QOF first extract Dec 2011 Mar 2012 Sept2012 April 2013

27. GPES in the Future • GPES was initially intended to be a MiQuest replacement using an updated HQL • That has changed • the plan to use HQL was dropped • now GPES writes a data specification that GP system suppliers will interpret as system searches • GPES customers must have a national DH/NHS CB sponsor • GPES funding set to match national demand

28. MiQuest MiQuestThe future

29. MiQuest users Ref: MiQuest Usage Report v1.0, NHS Connecting for Health, 5 Dec 2011 (NPFIT-FNT-TO-TAR 0100.01) 14

30. MiQuest components 12

31. MiQuest process Licence for enquirer free Access to data is free Specify code clusters and logical rules and write query Define plain English data requirement Run matching queries on n GP systems Requires remote access OUTPUT data in standard format 13

32. Open Data National Health ServiceOpen Data

33. The UK pioneers Open Data

34. NHS Open Data The Chancellor’s Autumn Statement 2011 saw three major Open Data announcements in health: • Linking primary and secondary healthcare datasets - The NHS IC will provide a service to link primary and secondary healthcare datasets from September 2012. • Publishing prescribing data - The Government will publish presentation level prescribing data by September 2012 and additional health and social care datasets by September 2013. • Personal data - The Government will ensure all NHS patients can access their personal GP records online by the end of the Parliament.

35. Will data be re-identified? • Extrinsic threat of re-identification • Is additional information available? • Is there motivation to re-identify? De-identified data Potentially identifiable data Indentifiabledata Extrinsic threat Controls Intrinsic vulnerability to re-identification De-identification 6

36. Effectively anonymised data Data can be disclosed for secondary uses without patient consent if it is effectively anonymised. De-identified data Potentially identifiable data Indentifiabledata HRA x FoIA Extrinsic threat DPA Controls x Intrinsic vulnerability to re-identification De-identification 6

37. Aggregate data Large populations Statistical disclosure control Patient level data with strong k-anonymity HRA FoIA DPA 5

38. Pathology Messaging • 500 million pathology test results annually • Project: database of all results by 2013 • HSC IC role: responsible for national data collections, repository of national data, data linkage (HSC Act 2012) • Information governance is crucial Encryption Encryption Path lab Practice DTS • Pathology labs • Care pathways • NICE guidelines • Research • Patients

39. Linkage & de-identification Trusted Data Linkage Service (TDLS) • Set up to serve the data linkage needs of medical professionals, researchers and industry

40. NewHSC IC Open Data GPES& EMIS ? GPESE2E MiQuest GPESTime-table ralph.sullivan@ic.nhs.uk 2