Care.data update – can we now trust the health and care system with our confidential personal medical data?

People in Kirklees have noticed that the  Blackburn Road Medical Centre has posted info on its website about care.data and how to opt out of it.

Dr Neil Bhatia, a GP who knows a lot about Information Governance, says if you opted out of care.data when it was started in 2014, you shouldn’t have to opt out again.

Please note that all the care.data info on the Blackburn Road Medical Centre dates from 2013 and relates to the first attempt in 2014 to roll out the scheme to collect patients’ identifiable, confidential medical records and share them outside the GP practice. This attempt came to a swift halt when serious issues of data protection and sale of data to commercial companies became apparent, and the scheme was put on pause.

Following the pause that was supposed to solve these problems and rebuild public trust and confidence, care.data is now being set up this September in pilot projects called care.data pathfinders . The pathfinders are currently 121 practices in six CCGs covering four areas (Leeds, Somerset, West Hampshire and  Blackburn with Darwen).

It doesn’t on the surface of it look as if the care.data scheme will be much better than when they first tried to roll it out, with the joyous news, via a Freedom Of Information request, that Blackburn and Darwen CCG haven’t even got an evaluation plan for their care.data pathfinder. And medConfidential, the group fighting to protect patients’ rights to confidentiality, is on the caredata advisory group and has asked NHS England for sight of their evaluation plan – but have not had any luck so far.

Jen Persson, who reports mainly on government plans to use health data, and data from other areas, for secondary uses, points out that:

‘While professional bodies (BMA , GPES advisory group, All Party Parliamentary Group report calling for a public benefits plan, Information Commissioners’ Office, and expert advice such as Caldicott) are ignored or remain to be acted upon, it remains challenging for the public to see how the programme’s needs, motives and methods are trustworthy. “The Caldicott 2 Review Panel found that commissioners do not need dispensation from confidentiality, human rights & data protection law.” Something’s gotta give. What will it be?’

She also says that in order to “build public trust and confidence in the way the health and care system uses data”– the stated aim of the care.data pause – relationships must be reliable and have integrity. But the care.data approach is to talk the talk, not walk the walk.

According to Jen Persson, they say  “Trust us – see the benefits” (But they won’t share the business cost/benefit plan.)
They say “Trust us – we’re transparent” (But there is nothing published in 2015 at all from the care.data programme board minutes.)
They say “Trust us – we’ll only use your data wisely, with the patient in control” (Ignore that we didn’t before  and that we still share your data for secondary uses even if you opted out  and no, we can’t tell you when it will be fixed…)

None of this inspires confidence that our identifiable, confidential GP patient records are going to be secure or well used if care.data goes ahead.

There is no date for national roll out and the timetable for this  is supposed to depend on evaluation of the pathfinder sites.

I guess it’s worth keeping an eye on whether our CCGs intend to join the pathfinder programme and Calderdale & Kirklees 999 Call for the NHS will ask them shortly and post the info on our website.

When the care.data scheme was started in 2014, Prof Allyson Pollock, professor of public health research and policy, said:

“Patients entrust their personal medical information to the medical profession and do not expect it to be sold on to commercial companies for exploitation and profit. Data are essential for planning and medical research and for monitoring patients’ access to care. The government has jeopardised the trust and it can only be restored by restoring public accountability and putting robust systems in place to prevent HSCIC from selling on data.”

Peter Roderick, barrister and senior research fellow at Queen Mary University of London, said”

National, EU and international laws, as well as professional rules, protect patient confidentiality. Using patients’ information beyond their direct care are exceptions to those laws, but there are good reasons for them, such as public health research. Part 9 of the Health and Social Care Act 2012 allows the Information Centre to obtain information about patients and to pass it on outside the NHS, but the full implications of doing so are only now becoming clear.

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