No mandate for care.data grab
The Government’s flagship data-sharing initiative will almost certainly save lives, but the argument doesn’t end there, writes Pulse editor Steve Nowottny
Here’s a question. Do you really understand how the care.data scheme works? Are you aware of what data will be extracted, who will be given access to it and what it will be used for? And could you explain all that to a patient?
How about your practice staff? How would you rate your receptionists’ understanding? What about your family, and friends? How many of them, hand on heart, would you say have even heard of the scheme?
With its Byzantine information-governance set-up, low-key publicity campaign and decidedly clunky name, it’s hardly surprising care.data has largely failed to capture the public imagination. But with one GP close to the process describing it as ‘possibly the biggest-ever culture change in general practice’, the profession should be in no doubt about the significance of surrendering guardianship of patients’ records.
The pros and cons sit along a familiar fault line of medical-political debate; it’s about weighing up the benefits for the many versus the rights of the individual.
Care.data will almost certainly save lives, with suppliers adamant it will improve first commissioning decisions, then medical research and ultimately patient care. So you would expect doctors as a group to be fully behind it – and yet many are not.
Sceptics fear confidentiality breaches and mission creep, with enough wiggle room in the ‘guarantees’ to leave room for doubt. As for the argument care.data will save lives? Well, so would a total smoking ban or a 50mph speed limit but, as ever, utilitarian benefits must be balanced against other considerations.
In any event, it’s an important debate – but unfortunately, it’s not one the country is having. Pulse’s survey suggests just half of GPs and practice staff and as few as 15% of patients understand how care.data works, and NHS England’s efforts to alert patients – sending out one unaddressed leaflet easily mistaken as junk mail – seem half-hearted at best.
Where GPs have gone above and beyond to set out the options to patients, the effect has been startling. Manchester GP Dr Amir Hannan found 372 of his patients opted out within a week after he publicised an opt-out form on his website. Whether similar numbers follow suit elsewhere remains to be seen, but the fear is many patients are sleepwalking into having their data shared.
GPs are again left in an impossible position – pay out of your own pocket to inform patients proactively, or risk sanctions and legal claims if patients complain they were not properly informed.
To share widely the most private medical details of millions of patients without consent is an astonishingly presumptuous move, even given the purported safeguard of so-called ‘pseudonymisation’. NHS England’s own analysis warns the ‘extraction of personal confidential data without consent carries the risk that patients may lose trust in the confidential nature of the health service’.
The current opt-out model came about because of fears patients might not get round to signing up to care.data even if they supported its aims. But there can be no justification for the NHS sharing potentially identifiable information, disclosed confidentially to a GP, if the patients concerned are not even aware of it.
Until the Government proves most patients have not only heard of care.data but have a reasonable understanding of its implications, it has no mandate to assume control of their records by default.