The Government must rethink the risks of this flawed data-sharing scheme
Huge questions remain over the cost, consent model and confidentiality implications of care.data, writes MP Roger Godsiff
I’m willing to bet that if any GP in England walked into their waiting room and said, ‘Right, who here would like their confidential medical data to be sold to the private sector?’ the result would be confusion closely followed by emphatic negatives. If the doctor followed that by informing their patients that, actually, they weren’t really even getting to make the choice, patients would be even less impressed.
So why do the Government think that care.data is such a good idea? As much as I would like to wave a magic data-extraction wand and make it easier to improve healthcare and assess different treatments, I don’t think it’s as simple as that. While there are arguments in favour of the care.data scheme, in my opinion they are insufficient to counter-balance the risks, at least with the current plans.
The most serious of these risks concern patient confidentiality. The Department of Health has not been able to provide adequate proof—rather than vague assurances—that confidentiality will not be breached and personal data released in a form that allows identification. I’m not convinced that it is even possible to guarantee that no breaches will occur with a database of this size, especially when so many private companies will use the data in different ways. I’m concerned about the effects it will have on GPs, who should be able to focus on treating patients rather than being data controllers.
Another worrying issue is cost. Perhaps even more concerning, however, is the amount of information, which we simply don’t have, and yet we are being asked to support this project regardless.
For example, the Government have refused to give a total cost for care.data, although the astonishing figure of £50 million has been floating around. I’ve been tabling Parliamentary Questions to press the Government for some clarity on a range of issues, including: when the Department expects to have a total cost estimate for care.data, why it was decided not to anonymise the data at source, whether any estimate has been made of the amount of GPs’ time that will be spent on care.data, why an opt-out form wasn’t included in the patient information leaflet, what penalties will be incurred by GPs who refuse to take part or opt-out all their patients, whether these penalties will include a loss of NHS funding, and whether patients will be able to sue doctors for releasing their data.
To be planning to go ahead with a scheme with such a long list of unknowns is mind-boggling. This lack of clarity over such basic information is symptomatic of how rushed the implementation of care.data has been, without time for proper consultation with GPs or patient groups.
Conflict with NHS values
The importance of the NHS’s founding values of public service and patient care, rather than private profit, is something politicians all across the spectrum have too often failed to grasp. The recent history of the NHS has been a sorry procession of privatisations and top-down reorganisations, with supporting doctors and nurses to provide excellent care slipping down the list of priorities. I’m concerned that care.data is yet another Government IT white elephant, which will suck up taxpayer funds but provide little public benefit.
I’m not arguing that the NHS shouldn’t make better use of patient data to improve healthcare. If the many problems with care.data could be tackled and enough time allotted for consultation, then perhaps these proposals could work. If an opt-in principle was introduced, a proper cost-benefit analysis carried out, and a guarantee made to only provide data to NHS researchers, perhaps I, and many others would be happy to support care.data.
But at the moment, the Government is pressing on regardless of the many doctors and patients who are unhappy about the scheme. Ignoring their wishes in favour of providing helpful data to private companies is not what the NHS should be about.
This is why I tabled an Early Day Motion on care.data. I wanted to draw public and Parliamentary attention to the problems with the current plans, and the potential for a huge amount of public money to be wasted and patient confidentiality breached. I would like to see the Government take time to stop and think about these proposals, and produce something which would help the NHS to provide better care rather than introduce a whole new range of problems.
Roger Godsiff is the Labour MP for Birmingham Hall Green.