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Important information on data sharing opt out
The Care.Data Programme closed in 2016
Following today’s media coverage on the care.data programme NHS England would like to clarify the following points in relation to patient care.
- Under the care.data programme no patient data has been collected so far from GPs
- The Pathfinder stage will test the care.data programme in four different English regions
- The opt out for the care.data programme will apply to confidential GP data being used for purposes beyond direct care
- The opt out is not currently live and will not impact upon direct care
- How we communicate this to patients will be tested in the Pathfinder areas
There are two opt outs – Type 1 (no data for secondary purposes leaves practice) and Type 2 (no identifiable data leaves HSCIC), and these apply to *all* data extracts, not just care.data.
Could you clarify whether the opt outs will only apply to care.data (in which case the concerns about identifiable data leaving the HSCIC for direct care e.g. EPS is due to a misunderstanding) or to *all* data – and if to all data, what are you doing about Type 2 objections for other data extractions – and data not extracted from GP EPRs?
I opted-out last year. My understanding is that NO records would be passed from my GP to this central database.
Your bullet point 3 (above) :-
The opt out for the care.data programme will apply to confidential GP data being used for purposes beyond direct care
is not clear since ‘confidential data’ is not defined. I’m quite happy with NO data – this is clear and what I expected.
If my doctor feels that some data should be sent then I EXPECT to have the option of giving consent – which I would if there were good reasons.
The information on the HSCIC site is confused, tortuous, convoluted and incredibly difficult to navigate. Having looked at the register of organisations that have been approved to receive data I’m horrified – there is no way that data can be kept confidential with this range of public and private firms involved. Yes I certainly believe BUPA will not use the information for marketing – I don’t think.
I also requested that data for other sources (hospitals, clinics etc) would not be exported beyond the central database. This was the second opt out that one could ask for. My surgery didn’t appear to understand this one. How can I have ANY confidence in the system when those being asked to supply the information have such a weak grasp of how it is being implemented?