Sunday, 9 February 2014

NHS data sharing: opting out.

The NHS data sharing scheme seems either sloppily organised or deliberately designed to keep opting out to a minimum.  The leaflet of information about the scheme arrived in my area about two weeks ago. It was unaddressed so it is possible that houses in areas more difficult to reach didn't get one (as often used to happen in the days when election leaflets were unaddressed).

After describing the scheme and its alleged benefits, on its fourth page the leaflet states that if you don't want your (anonymised, so they say) medical history  to be disclosed to all in sundry you should simply call in to your GPs' surgery and "ask the practice to make a  note of this in your medical record."

Personally I'm not too worried one way or the other.  I have not as yet any potentially embarrassing medial incidents: I'm not HIV+ve, haven't received treatment to rehabilitate me from drug abuse (or alcohol abuse, though that could be a matter of time), had an abortion, been treated for a mental disorder (though I agree that that should be no more embarrassing than a physical disorder) and still associate STDs* with telephones rather than the results of sexual promiscuity.

However, after reading discussion on the project I've decided that its purpose is more about enabling big pharma to increase their profits than improving  the treatments available to the public, and after innumerable disclosures of allegedly confidential information (the Snowden revelations, Barclay's Bank this very morning, to name but two),believe  the promises of anonymity to those who have something they'd rather not the world to know about are not to be relied upon. So in solidarity with them I've decided to opt out.

I also learned that there is a time limit of one month from  receipt of the leaflet to do the opting out, though this is nowhere mentioned in the leaflet.

So I've l "dropped in" to my GPs' surgery and asked them to make that note, just as the leaflet said.

It turned out not to be all that straightforward.

The receptionist who dealt with me asked if I realised that all the information would be anonymised.  Yes.

Ah, she didn't know where the forms were, but the other receptionist, on the phone, might.  (There is no mention of a form on the leaflet).  When the other receptionist had finished her rather long phone call she didn't know where the forms were either.  She suggested trying a  code on the computer, but that didn't reveal them, so it was decided that they might  be at the other surgery.  My name and address were taken and the the forms  would be forwarded.

I've now received them, and further complications have been revealed.  There is not one but three information sharing schemes from which we can opt out if we wish:

  1. With local hospitals, and health practitioners outside the practice (eg chiropodists) who might be likely to treat you,
  2. With the local authority, to enable them to plan better health care in the area.
  3. With the new national data base.
I have opted to stay in the first two, which seem worthy and sensible, and opt out of the national scheme, as I believe 40% of doctors have indicated they will do.

*Younger readers (if there are any) need to know that STD originally meant Subscriber Trunk Dialling, a technology which enabled us to make trunk (ie long distance) calls without going through the local telephone operator.  Cutting edge.

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