This is just a brief update; we hope to have more substantive (good) news soon, but something else we think you should know about is happening and we wanted to give you the heads-up.
Urgent action – your health data and beyond
While the Government and NHS England still refuse to rule out the commercial re-use of your medical information, their commercial cronies have lobbied the Office of National Statistics to consult on commercial, speculative and secret access to the unprotected data that ONS holds.
This “microdata” is highly sensitive, much of it personal data – which is why the ONS has had to keep it so tightly under lock and key. This isn’t your medical record, but it’s everything else the Government has, including the census and Health Survey; it’s all but your name.
With a general election in the offing and the budget this week, no-one else seems to have noticed. But where does the bulk of the data that the budget depends on come from? That’s right, ONS – and confidential business data is included in these proposals too.
Please act now. With just one week to go before the consultation closes, you can:
- Sign the open letter opposing the proposals – it’ll just take a minute
- Tell your friends – more information at www.AllButNames.com
- Fill in a longer response via the ONS website
There may be just a few of them but, as statisticians can count, your voice really matters.
medConfidential’s attention was drawn to this issue by Methods Insight Analytics’ breach of conditions for using ONS linked data sold by HSCIC last summer. It appears some private companies would rather change fundamental ONS principles than their own business models.
Has nothing been learned from the care.data fiasco? Allowing commercial access to highly detailed, sensitive information for private profit undermines both trust and the public good. Selling access to ONS microdata may make peanuts for companies and their shareholders, compared to the very real damage to public confidence in our National Statistics that will come from these proposals.
What’s happening with care.data?
We’d love to be able to tell you what’s going on with the care.data pathfinders but, depending on who’s asked, they’re both going ahead and not before the election… and now NHS England won’t say either way.
It has been clear for some time that data extractions won’t take place “before the autumn”, but that’s not quite the point. The question is when patients will start being written to, what they’ll be told, and whether it’s actually true.
Though the headlines talk about a delay, when pressed, “Mr Kelsey told HSJ that while the extraction would not take place before the election, pathfinders would send out communications around the data extraction and linkage programme.”
We sincerely hope that NHS England will do the right thing, and postpone sending anything out to patients in the pathfinders until after the election. Too many questions are still unanswered, and critical elements – such as the CAG regulations, new Directions and fixing the ‘Type 2’ opt-out error* – are still not in place.
Proceeding now, so close to the election, could be seen as an attempt by this Government to constrain the next. And, as Shadow Cabinet Office Minister, Chi Onwurah has said: “I think if we have another care.data, then the public sector is not going to want to touch data, whether it is open or shared and that is a real danger.”
* We understand HSCIC is working on a solution to the issue they have taken responsibility for, that will honour your choices and not affect your direct care. We will let you know as soon as anything public is announced, but this is unlikely to be until after the election.