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					NHS Databases –
The Big Opt Out

        Ross Anderson
   Cambridge University and
Foundation for Information Policy
           Research
                  The Story so Far …
   1910 – struggle over who owns medical records
    led to Lloyd George envelope
   1992 – IM&T strategy ‘a single electronic health
    record available to all throughout the NHS’
   BMA pointed out safety, privacy problems
   John Major sets up the Caldicott Committee (to
    report back after the 1997 election)
   Caldicott documents many illegal information
    flows; HSCA s60 allows SS to legalise them

TheBigOptOut 29 Nov 2006
                 The Story so Far (2)
   ‘Blair moment’ in 2002 – ‘Tony wants’
   The 1992 vision of the big central
    database is dusted off – NPfIT, CfH,…
   Government really believes this is working
    and they now plan to roll out the same
    architecture to childcare, elder care, …
   What are the implications for clinical safety
    and confidentiality?

TheBigOptOut 29 Nov 2006
                           Issues of Scale
   Blair philosophy is that data will be accessible
    (MISC 31, ‘Information Sharing Vision’) … but …
   You can have functionality, or security, or scale.
    With good engineering you can have any two!
   We can live with the risks of a receptionist
    having access to the 6000 records in a practice
    – but if 1,000,000 staff have access to
    60,000,000 records?
   ‘Sealed envelopes’ won’t work (official!)
   Secondary Uses Service will run unprotected for
    years – with a hope of eventual pseudonyms
TheBigOptOut 29 Nov 2006
               Data quality issues…




TheBigOptOut 29 Nov 2006
           Helen Wilkinson’s case
   Helen is a practice manager in High Wycombe
   She was wrongly listed as a patient of an alcohol
    treatment centre
   She demanded the data be corrected or
    removed – officials wouldn’t / couldn’t
   When her MP called an adjournment debate,
    Caroline Flint told Parliament it had been done
   But it took several months after that (and the
    story continues…)

TheBigOptOut 29 Nov 2006
        Extending NPfIT to Kids?
   Children Act 2004 provided powers
   Information to be shared between schools,
    police, social workers, probation, doctors…
   The Children’s Index points to all services with
    data on your child
   So schoolteachers will know if a child is known
    to social workers / police
   Home Office systems will predict kids likely to
    offend
   IC study by FIPR – this is unsafe and illegal

TheBigOptOut 29 Nov 2006
                           Opting Out
   There are at least three central NHS system
    projects from which you can opt out
   The first is the Population Demographics Service
    – the NHS master phone book. Get stop-noted if
    you really want to be ex-directory
   The second is the Secondary Uses Services,
    which collects hospital data. You can tell your
    hospital you invoke your rights under Section 10
    of the Data Protection Act


TheBigOptOut 29 Nov 2006
         Opting Out of Uploading
   The Government plans to hoover up all
    GP records early next year
   BMA view: consent needed
   Medix poll last week: 51% of GPs will
    refuse to upload data without patient
    consent
   Ministers are dithering!
   What do patients think?
TheBigOptOut 29 Nov 2006
      The Joseph Rowntree Poll
   In an ICM poll of 2,231 adults between 21-30
    October 2006, view asked on central records
    database with no opt out
        strong support         12%
        tend to support        15%
        neither                14%
        tend to oppose         17%
        strongly oppose        36%
        don’t know             6%
   Net opposition 53%
TheBigOptOut 29 Nov 2006
                           Conclusions
   It’s not just the ID card database – the
    government is trying to centralise most data held
    on citizens by the public sector
   This is unsafe and in some cases illegal
   But we don’t have to wait for a change of
    Government or a European law case!
   You can opt out of having your medical records
    uploaded – with the support of many doctors
   The first step is to get the code ‘93C3’ on your
    GP record

TheBigOptOut 29 Nov 2006

				
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