The health care records of British citizens will be turned over to anyone who has an interest in the data. PM David Cameron thinks it would be a waste not to.
Every NHS patient should be a “research patient” with their medical details “opened up” to private healthcare firms, says David Cameron.
In a speech in London Mr Cameron said he would consult on changing the NHS constitution, which governs how the the health service is run, so that all patients’ data is used for medical research unless they want to opt out.
The Prime Minister said it was “simply a waste” to have a health service like the NHS and not to use the medical data it generated.
“Let me be clear, this does not threaten privacy, it doesn’t mean anyone can look at your health records, but it does mean using anonymous data to make new medical breakthroughs.”
“The end result will be that every willing patient is a research patient and every time you use the NHS you are playing a part in the fight against disease at home and around the world.”
Critics are naturally concerned about privacy issues. It is one thing to intend anonymity and quite another to be successful in guarding it. The director of Big Brother Watch, Nick Pickles, says little is being done to address privacy concerns.
The proposals also carry very real health concerns. It would be an extremely high price to pay if people, because of fears about confidentiality, told their GP less about their illness. Yet there is already evidence that this is happening and it is regretful the Government has announced this proposal without a serious discussion of confidentiality beforehand.
Coming at a time when the NHS is already the worst performing public organisation on data protection – as highlighted by Big Brother Watch’s recent report into data protection in the NHS. Indeed, it was only a few months ago that the Information Commissioner’s Office questioned whether there was a systematic problem in the NHS around data protection.
As highlighted by the Oxford Internet Institute in the British Medical Journal, “the current system of “partial pseudonymisation” is nothing of the sort: it is a euphemism to describe measures that might prevent immediate identification of individual patients by the person using the data but which do not make re-identification impossible or even difficult.” The Government’s assurances around confidentiality and anonymity have not addressed this point.
Release of the records is not strictly voluntary. It is an opt-out program which carries the inference the data belongs to the government and it does not have to solicit the patient’s permission. That is perhaps the most pernicious aspect of the proposal. Why show any respect to the guinea pigs?