On January 23rd we had a conference call with the NHS Information Centre and a couple of its software suppliers about anonymisation. LBT readers will have followed how your GP records are to uploaded to the new central database care.data for resale unless you opt out. Any previous opt outs from other central systems like SCR will be disregarded (even if you wrote saying you opted out of all central systems), along with opt-outs from regional systems.
We’d been told that if you opted out afresh your data would be uploaded only in anonymised, aggregated form; after all the Prime Minister promised. But I persisted. How will the NHS work out doctors’ bonuses in respect of opted-out patients? Doctors get extra payments for meeting targets, such as ensuring that diabetic patients get eye tests; these used to be claimed by practice managers but are now to be worked out centrally. If the surgery just uploads “We have N patients opted out and their diagnostic codes are R1, R2, R3, …” then officials might have to give doctors the benefit of the doubt in bonus calculations.
It turned out that officials were still dithering. The four PC software vendors met them on January 22nd and asked for the business logic so they could code up the extraction, but officials could not make up their minds whether to respect the Prime Minister’s promise (and human-rights law) or to support the bonus calculation. So here we had a major national programme being rolled out next month, and still without a stable specification!
Now the decision has been taken. If you opt out, all your clinical data will be uploaded as a single record, but with your name, date of birth and postcode removed. The government will simply pretend this is anonymous, even though they well know it is not. This is clearly unlawful. Our advice is to opt out anyway while we lobby ministers to get their officials under control, deliver on Cameron’s promise and obey the law.