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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

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NHS Databases – The Big Opt Out

Ross Anderson

Cambridge University and Foundation for Information Policy Research

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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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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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  • 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