Last week NHS England announced that the care.data scheme would be put on hold for six months while efforts were made to “build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they chose to”.
While this move might have looked like a sensible response to concerns raised over care.data (which have been ratcheting up in recent weeks), an article by Computer Weekly suggested it was down to legal issues over the question of privacy.
And it was then revealed that last year the hospital data of 47m NHS patients was bought by insurance companies, combined with other data and used to inform premiums. Given that one of the instinctive concerns many people have with care.data relates to the potential for private sector organisations to generate profits from the use of NHS patient data, this story has dealt a blow to the campaign to build support for the programme.
The aim of care.data is to create a national database of certain pieces of data from GPs, hospitals and other care services to help get a better picture of health in England. Data that identifies individuals, such as NHS number and date of birth, will be collected but will be “pseudonymised” – it will not reveal the identity of an individual without supplemental information, which will be kept separately.
But a major factor in the difficult gestation of care.data has been the fact that the governance and privacy protection processes of the programme were either poorly articulated or conspicuous by their absence. Question marks remained over how privacy laws, amended in the Health and Social Care Act 2012, would actually apply to patient data once extracted from GPs. Uncertainty abounded and, where awareness did exist, public trust in the scheme was low.
In the House of Commons today, Health Secretary Jeremy Hunt took questions on care.data from MPs. Shadow Health Secretary Andy Burnham accused him of adopting a “cavalier” attitude towards the privacy of the public and doing nothing to allay mistrust in the scheme. Hunt’s stock response to Burnham, and other MPs’ questions, was to accuse Labour of failing to provide mechanisms for patients to opt out of comparable programmes while they were in power. This argument was one step away from “we’ve done you a favour giving you an option at all” and does nothing to instill confidence.
We are living through a time where the power associated with access to data is becoming increasingly clear. People are more aware that just because they don’t perceive any negative impacts from their personal data being accessed by a range of unknown organisations, it doesn’t mean that they won’t arise. What is needed now is clarity about how care.data will work and specifics about how it will function transparently.
While care.data might not be the first health-related database accessible to a variety of organisations outside the NHS, it is unprecedented in terms of scale and it is a pressing issue right now. People are suspicious of it and something significant needs to happen to turn that around – Jeremy Hunt’s use of the word “pause” when describing the delay to rolling out care.data will contribute nothing to this thanks to its unpleasant associations with the Health and Social Care Act 2012.
There is clear cross party support for care.data in principle, which is encouraging given the potential benefits of a database of this kind. Using the data of the NHS patient body to improve healthcare is a laudable ideal that is done a disservice by the impression of liberties taken and assumptions made about the use of our personal medical data.
The fact that NHS England only circulated a leaflet designed to tell everyone about the scheme after an order from the Information Commissioners Office is a case in point. Guardianship of our health data is a huge privilege – and the details of care.data, and the manner in which they are communicated to the public, must reflect the magnitude of it.