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Care.data is dead - long live care.data?

Whilst the care.data 'brand' has collapsed, the widespread sharing of your data looks set to expand - and not just in health.

Image: Flickr/Duncan C

So care.data is dead.

It was killed off – not because of ‘privacy paranoia’ as Polly Toynbee put it in a recent Guardian article – but because promises from politicians and some of those entrusted with patient data proved to be false.

But while the toxic brand of care.data may have finally been laid to rest, the Government is pressing ahead with its ‘data-sharing’ plans.

To understand what happens now to privacy and to the good research that needs to be done, let’s look at the record.

It took over 2 years to even begin to respect patients’ wishes. There had been no proper planning for what might happen if people took up the offer to opt out. A level of presumption from those in charge towards public sentiment that seems all too familiar.

We now know that about 1 in 45 patients across England opted out of having their medical information sold on or shared. That’s a figure roughly equal to the margin of error in every opinion poll you’ve ever seen. Even the census, the gold standard for population data, misses data equivalent to twice as many people.

Of greater concern to most public health researchers is not the opt-out numbers themselves, but the loss of trust in any health research, due to the government’s failure to guarantee the data from HSISC wouldn’t go to commercial sources who’d misuse them. We now have a situation where genuine health research is impeded even as commercial access to an ever wider pool of data is maintained.

As the Association of Medical Research Charities says:

“People need to feel that they can trust the system to handle their information with care and competence, and respect their wishes. If the public do not trust the system, they will be unwilling to share health information for medical research and this will seriously hinder progress on new treatments and cures of diseases such as cancer, dementia, rare conditions and many more.”

Instead, the announcement that retired the care.data brand was neatly buried under the Chilcot report.

At the same time, the Government released the Digital Economy Bill – which extends the spirit of care.data across the rest of Government. This is a bill that the Open Rights Group says “is creating the data sharing powers to enable policies that have not been properly outlined or discussed”.

And at the same time, almost unnoticed, a long-delayed review of data security, consent and opt-outs in the health and care system was also published.

The Review suggests removing your existing opt out for GP data going to the HSCIC (page 31). Information you share with only your GP, will be copied into the HSCIC against any wishes you have already expressed.

 But then data about you will leave the HSCIC. The review also suggests that the opt out covering the very same hospital data that caused so much consternation when it was shown to be sold on and shared – linked, individual-level medical event histories which 1.2 million people don’t want passed on – should simply not apply (page 34).  

Even people who are eager for their own data to be used can understand why someone at risk might make a different decision for themselves or their family. "It seems the Department of Health is trying to have it both ways - tell patients one thing and commercial entities the other.

The last data release register from HSCIC contains continued release to commercial companies. One, Beacon consulting, on their homepage, advertise "we help our pharmaceutical clients solve difficult commercial problems". Their commercial access was renewed in the most recent HSCIC data release register.

Those without an agenda see that promising one thing and then doing another will undermine, not rebuild, trust in handling of patient data. But such understanding seems entirely absent in these latest proposals and, yet again, critical planning for implementation will not begin until after the decision has been made.

So Ms Toynbee can rest assured. The proposal in 2016 is to roll back to the status quo, as if Jeremy Hunt had never been Secretary of State: no meaningful opt opt, even more of your medical information passed on for purposes beyond your care – and, the sting in the tail, overstretched doctors expected to explain all this to patients and get blamed when Government once more changes the rules underneath them. Junior doctors will know what that feels like; anyone concerned with their privacy will soon know it too. But not because those in authority will tell them.

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