Ross Anderson PowerPoint Presentation.ppt

							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

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                 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?

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                           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
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               Data quality issues…




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           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…)

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        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

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                           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


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         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?
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      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%
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                           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

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