Consent issues reported as unsatisfactory in this journal in 20081 have again stalled the national programme for storage of patient information. Many patients were unaware that they had agreed consent for personal medical data transfer to the Scottish Emergency Care Summary following a mailshot.2 Failure to question the effectiveness of a mailshot opt-out system has now cost NHS England dearly. Mailshot opt-out compromised the advice of the MDU, the RCGP, and the GMC. According to the Health and Social Care Information Centre up to 700 000 patients have requested an opt-out from care.data, consistent with our practice16.5% opt-out.
The opt-in option should be considered. Opt-out, particularly by mailshot, diminishes the likelihood of informed consent. Opt-in balances risks and benefits personal need to share data but reduces value to commerce or science. GPs’ data serve individuals, not commerce. The GMC states, ‘Make the care of your patient your first concern’ and emphasises ‘express’ consent before disclosure. The opt-in arrangements lie more comfortably with this guidance. Ironically, the data managers failed to understand and assimilate published data. With the certainty of hindsight further incontrovertible evidence reveals opt-out is flawed.
- © British Journal of General Practice 2015