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

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

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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 NIGBs
  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 ?

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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• withdrawn by HMG after pressure from BMA, BCS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) ?

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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 ?

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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 patients 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 ?

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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 wont want a Coroners Justice Bill rerun ?

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• NEF has engaged with 6000 people and
  uncovered a picture of how they understand the
  Health Services 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

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