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

New HSC IC GPES & EMIS GPES E2E GPES Time- table MiQuest Open Data 2 Information governance

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

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

General Practice Extraction Service GPES

EMIS central hosting services GPES LV PCS 18 EMIS’ Solution for GPES Fam Service or Web Central Reporting Service Extract server C C C C C GPES IG Principles Data Sharing Agreement

A little GPES revision? Information governance definitions GPES

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

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

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

Permissive laws – patients that dissent Dissent from secondary use of GP patient identifiable data Dissent withdrawn second use of GP patient identifiable data 9Nu0.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

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

GPES Business Unit Interpret and define the customer requirement Standard Info Gov assessment Independent Advisory Group Standard Info Gov assessment Enquirer GPSSs Develops queries and notifies practices Practice database Send to GPSSs Create data spec and comms Extraction Process

Practice consent to data disclosure Practice receives notification GP System Supplier develops queries and notifies practices Decides to participate Decides to release data Enquirer Runs extract GP controls data extraction 1.Set preferences 2.Set specific extract decisions 3.Run ad hoc GPES queries GP controls data extraction 1.Set preferences 2.Set specific extract decisions 3.Run ad hoc GPES queries

GPES Timeline April 2013 EMIS/GPES contract IAG first meeting EMIS first mailing Practice awarenessand training QOF first extract Sept 2012 Dec 2011 Mar 2012 EMIS second mailing

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

When will GPES arrive? Our timetable GPES

GPES Timeline April 2013 EMIS/GPES contract IAG first meeting EMIS first mailing Practice awarenessand training QOF first extract Sept 2012 Dec 2011 Mar 2012 EMIS second mailing

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

MiQuest The future MiQuest

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

MiQuest components 12

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

National Health Service Open Data Open Data

The UK pioneers Open Data

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

Will data be re-identified? 6 Extrinsic threat of re-identification 1.Is additional information available? 2.Is there motivation to re-identify? Extrinsic threat Intrinsic vulnerability to re-identification Controls De-identification De-identified data Potentially identifiable data Indentifiable data

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

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

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 Path lab DTS Encryption Practice Pathology labs Care pathways NICE guidelines Research Patients

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

New HSC IC GPES & EMIS GPES E2E GPES Time- table MiQuest Open Data 2 ?