Care.data: why are Scotland and Wales doing it differently?BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g1702 (Published 20 February 2014) Cite this as: BMJ 2014;348:g1702
- Margaret McCartney, general practitioner, Glasgow
The system that offered researchers linked primary and secondary care records for the first time is on pause. The hesitation comes after polls suggested that less than half the population had heard of the scheme1 and concerns about the security of the data, the process for gaining consent,2 and data being available to commercial organisations.
After NHS England sent every household a leaflet that didn’t explicitly mention care.data, the Information Commissioner’s Office said, “We don’t feel that the opt out has been explained as clearly as we expected.”3
The Health and Social Care Act 2012 gives the Health and Social Care Information Centre, an executive non-departmental public body, the power to require all general practices to upload their data. Citizens can opt out by asking their general practitioner—but only if they know they are otherwise opted in.
A rich and accurate dataset of referral patterns, diagnosis, treatment episodes, drug allergies, and trends in admissions has advantages for research and planning health services. But …