Unsurprisingly it all kicked off about the care.data scheme that I last posted about, and it turns out that there are a lot better informed and better resourced people than I with an eye for this sort of thing. Reading, for example, the Guardian’s coverage of the topic will be far more informative than anything I could post.
I will however, update on their response to my letter. I had hoped that by asking for them to clarify how and who the information was shared with, and thereby allowing me to take an informed decision I would get a nice, hopefully templated, response.
Instead I got the following:
Dear Mr Theyers
Thank you for your question about care.data. If you wish to opt out you must inform your GP. If you have any questions about how your data will be used please contact your GP.
Not exactly the most positive response. Nor the more informative.
You’ll probably have seen that Twitter is full of people encouraging us to opt out of the government’s care.data scheme (whereby non-anonymised health records are made available to non-NHS organisations). The scheme is run by the HSCIC and, unless you specifically opt out with your GP, your data will be taking part.
What’s painfully unclear is exactly who gets access to this data. Universities and research organisations? Yay! Insurance companies and law enforcement? Boo! (you get my drift)
The magic key is “section 251 support“. Organisations with section 251 support have access to this information. So I’ve written to HSCIC asking them about it:
As you may have seen Twitter is all a-flutter today about opting out of care.data.
I wonder if you could tell me a couple of things so that I can inform my decision as to whether to opt out or not?
- is there a public and up to date (and regularly updated) list of the organisations that have section 251 support?
- is the process by which an organisation applies and is given section 251 support public?
- is there a public and up to date (and regularly updated) list of current applications for section 251 support?
While I understand the need for the NHS to share information more freely to improve care outcomes I am extremely concerned about third parties (such as insurance companies) getting hold of this information and as such hope that you will be transparent about the organisations with access to this information.
I’ll let you know if I hear back.