RogerBW's Blog

(Readers not in England, if any, please ignore.)

Have you even heard of care.data?

You should in theory be getting a leaflet through your letterbox soon. Maybe it'll arrive in time. Maybe it won't arrive at all. This concerns the latest data mining effort by the NHS.

The plan is that large parts of all medical records will be uploaded into a new database run by the Health and Social Care Information Centre, in which they will be used for administrative and statistical purposes, and from which they will be released to anyone who cares to pay, perhaps in an anonymised form, perhaps not. (They won't be available to GPs, hospitals, or anyone else who might actually be involved in the medical care of individuals.)

All this is great, if:

• The HSCIC, and the rest of the NHS that will have access to this system, and the third parties that will be able to buy copies of the data, never suffer an information leak from this high-value target.

• The Secretary of State does not ever decide that patient confidentality needs to be overridden (no vote or justification needed).

• There's nothing in your medical records that you don't want known (there is no formal definition of the "sensitive" data that are being left out, and it's subject to later change.

• You trust not only the HSCIC but all future governments and potential owners of this information.

• The anonymisation is done, and anonymisation of personal records works to prevent identification of individuals. Ross Anderson thinks it doesn't. Bruce Schneier thinks it doesn't either.

• You don't care if the world and his dog know everything about you that your GP knows.

• You will never change your mind about any of these things.

If you're happy with all that, great! Stop reading now.

If you wouldn't like this to happen, it's up to you to act. Your GP is required by the Health and Social Care Act 2012 to provide the data when required. The only way this can be prevented is by you getting your GP to put a flag on your records (and those of any children for whom you're responsible).

There's a leaflet here with a summary of the situation and a suitable form to be handed to your GP.

Please note that this is nothing to do with the Summary Care Record (out of which you may have opted in 2009). In spite of a ministerial promise to respect existing opt-outs, this will not happen.

If you ever change your mind and want your data irrevocably loaded onto this system, no problem! That can be done at any time.

If you'd like more information, Neil Bhatia has put up a reasonably comprehensive web site about the project and just what can and will be done with data once they get into this system.