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Data access and the NHS – more research versus patient privacy?

The Guardian’s front page story from a couple of days ago (“NHS medical research plan threatens patient privacy”) looks like it has generated some healthy and opinionated responses from readers, but the government consultation that led up to it has now closed. The story here is that the proposed UK National Health Service constitution – enshrining the principles and values of the NHS – contained, buried amongst other important stuff on issues such as access to services, quality of care, and informed choice, a crucial nugget which could change the way that medical researchers get access to patients’ data.

The Constitution Handbook says (p24): “…Therefore, the NHS will do all it can to give patients, from every part of England, with any illness or disease, a right to know about research that is of particular relevance to them and, if they choose, to take part in approved medical research that is appropriate for them. Patients can therefore expect that a health professional or a research professional who owes the same duty of confidentiality as a health professional may use care records, in confidence, to identify whether they are suitable to participate in approved clinical trials…”

According to the Guardian, Harry Cayton, the new chairman of the National Information Governance Board for Health and Social Care, has billed the proposal as “ethically unacceptable”.

It’s not obvious from the Handbook how it would be decided which researchers, and which research projects, could directly get access to medical records. It’s also not stated whether researchers involved in commercially funded projects (eg, trials funded by drug companies) would be able to screen databases and directly contact patients. As some respondents have argued, the current system of recruiting patients may result in bias for some types of research. But if the proposals are to go ahead, it would be crucial to develop a secure framework to establish which research questions are in the greatest public interest and most in need of a broader approach to recruitment. This does seem to have been recognised by the National Health Service’s own Patient Information Advisory Group, which has advised that the proposal be removed until fuller discussion has taken place.

Clearly, with centralised and (virtually) universal computerised medical records, the UK has enormous potential to strengthen its medical research culture; but I’d be interested to hear whether similar proposals are being developed in other countries, and what public reaction is developing.

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