Opting out of health data collection

The Government is rolling out a system – the Summary Care Record or SCR – which will make summaries of medical records available to hundreds of thousands of NHS staff in England. Ministers say it will facilitate emergency and unscheduled care, but the evidence in favour of such systems is slight. It won’t be available abroad (or even in Scotland) so if you are allergic to penicillin you’d better keep on wearing your dogtag. But the privacy risk is clear; a similar system in Scotland was quickly abused. Colleagues and I criticised the SCR in Database State, a report we wrote on how government systems infringe human rights.

Doctors have acted at last. The SCR is being rolled out across London, and the Local Medical Committees there have produced a poster and an opt-out leaflet for doctors to use in their waiting rooms. The SCR is also political: while Labour backs it, the Conservatives and the Lib Dems oppose it. Its roll-out means that millions of leaflets will be distributed to voters, pardon me, patients in London extolling its virtues. A cynic might ask whether this is a suitable use of public funds during an election campaign.

3 thoughts on “Opting out of health data collection

  1. Just a thought – the poster & leaflet described above appear to cover those who are currently registered with a GP, but what about those who are no longer registered,due to, for example, moving house, moving abroad, failing to reply promptly to a survey from the PCT and being struck off as a result?

    Will their data be entered without possibility of opting out? Or is there someone else to whom they can write?

  2. Re your comment that the SCR will not be available abroad. If you the patient has an Advanced Healthspace account then your SCR is available to you from any internet connection in the world (which probably includes Scotland I think)

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