I strongly support the care.data initiative. We have been very slow in the UK to realise the potential value of the data contained in GPs’ records as a consequence of the patient registration system – something that we have had in this country since the birth of the NHS.
The ability to interrogate this information and to use computer-held data to answer clinical questions by studying the course of illness in large cohorts of patients, picking up drug side effects, getting a better understanding of rare diseases and by doing trials of drugs and other interventions is enormous.
Of course there are potential problems around confidentiality, and the generic problem of system failure and data leakage, but my understanding is that surveys have shown that the great majority of patients would support the use of their data, aggregated or pseudonymised, for research for patient benefit.
It seems to me that the principle is so obviously right that it would be a tragedy if we were unable to negotiate these practical problems and realise the potential of the scheme.
Professor Roger Jones is editor of the British Journal of General Practice