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Many of you will have seen the media coverage of NHS Digital’s plan to extract patient data on anyone who doesn’t opt-out by the end of the month, and the subsequently-announced delay until September. This covers “Type 1 opt-outs” from GP to NHS Digital. The practice position is:
We have discussed this in detail with our Patient Participation Group, who raised concerns about this with us from the patient perspective in advance of the media coverage. While we recognise there would be benefits nationally to have large-scale patient data sets available for research and planning services, the way this has been implemented and the explanations NHS Digital have provided for how your data could be used are not reassuring.
After discussion with our PPG, we have agreed as a practice that:
As such, and with the agreement of our Patient Participation Group, we will opt all of our patients out of the GPDPR process by default.
This means that no one’s data will move across without their explicit consent. However, where patients have had a chance to consider the pros and cons of sharing their data and want to opt in, their data can move across at that point. If you would like this to happen, please let the surgery know.
You may wish also to implement a national data opt-out, which is different from the type 1 opt-out. This can be done directly with NHS Digital, and the differences are outlined in the graphic below (for which thanks are due to Neil Bhatia).
Finally, we are grateful to the SW London data protection officer and particularly to our PPG for their time and insights on this subject, and to Londonwide LMCs who have supported similar action elsewhere in London.