To keep things in perspective, CfH is not the only organisation having trouble with its IT projects. United Health has been having a bad week. Its Evercare chronic illness management methodology is shown not to work in the UK.
But not as bad as Kaiser Permanente. First they lose their CIO where it is still unclear if his resignation was related to this expose. Then the more troublesome issue of difficulties with ethics. And we thought “Granny dumping” was bad!
And of course lest we forget, the Democrats gained control of both the House of Representatives & the Senate in the USA & there is talk once again of creating a single payer healthcare system. Which makes all this talk of US pressure to open up the NHS just so much hot air. Lame duck anyone?
Well over a year after I raised concerns about the National Care Record Guarantee, the Guardian finally has picked up a story about the Spine & the lack of meaningful safeguards. This is what happens when you staff the design committee with people who do not understand the technology they are working with. My previous story can be found here.
What should you do if you are concerned? (credits to the Guardian)
If you are concerned, you should discuss it with your GP. You can put a block on your own data by writing to:
The Secretary of State for Health Richmond House 79 Whitehall Terrace London SW1A 2NSAnd send the same letter to your GP.It should say:Dear Sir/ Madam
I require you not to begin processing my sensitive personal data to the proposed NHS Summary Care Record on the Spine. It is likely to cause me substantial unwarranted distress because:
1. No ’sealed envelopes’ yet exist to limit access
2. No online patient system yet exists to correct errors
3. Data uploaded may include genetic, psychological or sexual information
4. It is intended to make my data available to social workers, researchers and commercial firms
5. My consent will not be asked before beginning processing
6. Adequate criminal penalties against abuse do not yet exist
7. Police and other agencies can gain access to a potentially unlimited range of information about me. There is abundant evidence that computer databases - including police, vehicle licensing and banking computers - are routinely penetrated by private investigators on behalf of clients, including media organisations
8. 250,000 smart cards have been issued granting access to the Spine
9. The department threatens to withhold appropriate medical care to objectors
10. Doctors say there is no necessity to design the Spine in this way
For these reasons, among others, I strongly fear that I am in danger of having false or damaging health information fall into the wrong hands. My privacy is being unnecessarily violated.
To readers from far & wide:
The server logs make for interesting reading, telling me just who is visiting the site & the topics that interest you.
So can I invite you to participate in the discussion, by telling me why I am wrong if indeed I am so & generally shedding a little light on this brave new world we inhabit.
It is more fun that way, honestly!
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