If I learnt anything about myself while being chair of Royal College of General Practitioners, it’s that I am not one to shy away from giving opinions that are out with the views of “establishment.” But even for me, it’s strange to find myself arguing against many of those whom I admire in the health field. But on balance, I believe that those who are arguing so vocally against care.data either have not declared their conflicts of interest, or have not read the guidance, or do not understand what is being proposed (conflating the summery record with care.data)—or quite simply (and I can understand this) mistrust any reassurances offered from on high (after all, were we not offered “no top down reorganisation?” But that’s another story).
So, let me nail my colours to the mast. The care.data programme, which is expanding hospital episode statistics to cover out-of-hospital care, will be transformational to our NHS, to research, and to improving the quality of care that we provide to patients.
There is a growing disquiet in the media about care.data, not helped, on the one side, by endless scaremongering about groundless allegations that the data will be sold to insurance companies, passed on to the police, and medical details exposed for all to see; and on the other hand, by bland reassurances and a publicity campaign that is too little (and hopefully not too late.)
Hospital episodes statistics (HES) has been in place for NHS hospitals for over two decades. It is the envy of the world. The care.data programme is a long overdue expansion of this system to include primary care.
For the first time in the history of the NHS we will have a linked, national data set—being able to track patients across the whole system, map disease prevalence across the country, monitor the incidence of illnesses, and generate an invaluable resource for researchers to use to tackle population based research questions that require big data to answer (how else did we manage to debunk the erroneous link between MMR and autism?).
Of course, every man made system has the potential for man made errors. But for 25 years, hospital data have been handled securely with a suite of legal safeguards to protect confidentiality—the exact same safeguards that will continue to be applied when primary care data are added.
As ever, our prime concern should be for our patients. Hospital episode statistics has been an unquestioned force for good, leading to tens of thousands of research papers and clinical audits. We work for a national health service, not a national hospital service, so it’s high time that primary care got on board.
Clare Gerada is the chair of the primary care transformation board, NHS London Region. She is a London based GP and former chair of council of the Royal College of General Practitioners.
Competing interests: I declare that I have read and understood the BMJ group policy on declaration of interests and I hereby declare the following interests: I am employed by NHS London Region as chair of primary care transformation board.