NHS data should be used only for patients

Medicine, we are frequently told, is entering an astonishing new age when technology will allow ever more sophisticated treatments for patients. One of the drivers of this progress will be “big data” – the statistics and facts behind hundreds of thousands, if not millions, of cases of disease which can be mined for new insights and, hopefully, new methods of prevention and cure. So misuse of patient data represents a double betrayal: not only of the individuals involved, but also of future patients potentially deprived the benefits of medical progress because the tide of opinion has been turned against data-driven research.

Whether it is legal or not, it is hard to argue that the case The Daily Telegraph exposes today does not fall into the category “misuse”. Laws insist NHS data should be released only to researchers “in the interests of improving patient care, or in the public interest” but it turns out that records relating to 179,000 lung-cancer diagnoses have been released to a law firm closely linked to Philip Morris, one of the world’s biggest tobacco companies. The company said its plans for the data were to help achieve a healthier global population, but Philip Morris has consistently attempted to downplay the link between smoking and cancer, and many will suspect that the data will ultimately be used to further commercial ends of the tobacco industry.

This is a disgrace. The NHS has repeatedly shown that it struggles with “big data”. An IT overhaul of patient records was ditched in 2011 after costs reached £12 billion. Subsequent efforts to draw on GP records to aid research were dropped after it was suggested the database could be hacked and data from tens of millions of patient records have been sold to the insurance industry. No wonder patients are wary.

It is critical their concerns are addressed. There are many disadvantages to the monolithic nature of the NHS, but one advantage is that it can draw on large numbers of patient records, potentially allowing Britain to become a pioneer in a datadriven medical future. The Government, which is to launch a new consent model in March, must show that it is simple for those who wish to opt out to do so, and that the records of those who opt in are being used in pursuit of the noblest, most ethical aim possible: to save lives. Suspicion of misuse, commercial profit and cynical exploitation of patient records jeopardise that aim, and risk becoming a fatal malignancy in an otherwise healthy idea.