Making the information revolution come true: THE ROLE OF PSEUDONYMISATION Ian Herbert

1. Making the information revolution come true: THE ROLE OF PSEUDONYMISATIONIan Herbert stuartianherbert@gmail.com Vice chair (Partnerships), BCS Health Committee member, BCS Primary Healthcare Group Stds appraiser, NHS ISB

2. The Information Revolution Included several big promises • Patients to control their records - what does it mean? • Patient control of record access: can already • have a copy to do as they please: can have printout now. • on-line access already available in a small % practices • Interact with their GPs through their records: what does it mean? • “The patient will determine who else can access their records and will easily be able to see changes … made to their records. We will consult on arrangements, including appropriate confidentiality safeguards, later this year” • they already can - in part • most happy for their clinicians to decide what to share for care • would like full control of sharing of sensitive items (sealed envelopes) • have no legal right to control sharing of their de-identified data • no consultation has happened yet □

3. Does the Bill fit the Bill? • The Bill currently proposes: • more statutory gateways for the exchange of identifiable data • especially for the IC • one or two specifically excluded from by NIGB’s remit • interference with privacy will be ‘proportionate’ • abolition of the NIGB • ECC given to one of the larger data collectors, the CQC • pbR coverage will rise from 33% to 75% • and PROMS, patient surveys, quality data, commissionng data all greatly extended, or introduced □

4. Enter the research establishment • UK Clinical Research Collaboration founded 2004 • Private data for public good AMS report 2006 • Data Sharing Review, Mark Walport and the ICO,2009 • Led to data sharing proposals in Coroners & Justice Bill • withdrawn by HMG after pressure from BMA, BCS & Privacy International • CfH Research Capability Programme founded 2005 • RCP & NIHR found Health Research Support Service, 2008 • working on safe havens to link & cleanse data • then provide researchers with anonymised or pseudonymised data • but import identifiable data, & retain identifiers for the minimum necessary time • A new pathway for the regulation and governance of health research AMS Jan 2011 • DH to give some governance functions to a new Health Research Agency (quote from DH letter to NIGB in NIGB report for 2010) □

5. Researcher requirements • Researchers want: • access to patient data to select study subjects • direct access to subjects to avoid ‘consent for consent’ issue • access to as much of the patient record as they can get • rarely this includes identifier data, e.g. surname • They consider that: • only identifiable data will do for these tasks • access problems to it are stifling research in UK • solution is to implement Data Sharing Report proposals • Agree patients have the right to opt out of studies □

6. Heading off the impasse DH & researcher establishment seem to: • be largely unaware of modern privacy enhancing technology • make much less use of it than they could To fulfil researcher requirements, • requires input from patient’s clinicians to • provide pseudonymised data for subject selection • maybe pre-vet, certainly contact, subjects selected • re-identify any subjects the researchers want to contact during or after the research • some clinician, esp. GP, reluctance to do this • this attitude needs to change □

7. Can patient confidentiality survive? • Failure is not an option • Growing pressure to use patient data for secondary purposes (e.g. QIPP and PARR) • The researchers pressing hard • Need for transparency with patients / public • Without greater PET use, it may not • We need to sort out the rules for safe haven behaviour, etc • HMG won’t want a Coroners & Justice Bill rerun □

8. “… NEF has engaged with 6000 people … and uncovered a picture of how they understand the Health Service’s obligation to safeguard their privacy which differs uncomfortably from current practice. We hope that our findings will encourage the Health Service to work towards a new ‘social contract’ which permits the use of personal data for projects of public benefit, while ensuring that public trust in medical confidentiality is not jeopardised.” • “Valuable and socially useful forms of data sharing cannot be protected through obscurity. Doing so cedes the discussion to the most vociferous privacy activists. Instead a new settlement on the use of medical records must be constructed, through a genuine dialogue with the public on the benefits and risks of the uses of medical data” Who sees What: exploring public views on personal electronic health records New Economic Foundation, 2011 – sponsored by the Wellcome Trust