The "cost of privacy" equation is still out of balance

Yesterday’s Guardian had an article about patients’ right to have their Summary Care Record (SCR) deleted from the national NHS database. According to the article, Connecting for Health (CfH) and the Dept of Health had, until recently, argued that individuals should not be entitled to have their SCRs deleted on the grounds that the cost of deleting records selectively would be ‘prohibitive’. Instead, they had apparently offered to ‘mask or suppress’ the records of people who expressed concern.

Frankly, that sounds like so much eyewash to me. Whether you want to mask, suppress or delete an individual record, you still have to locate it in the first place; and having done that, deletion once and for all must be less costly, over the life of the information, than keeping it under some restrictive access regime.

Apparently this current concession results from talks between CfH and the Information Commissioner’s Office. It’s good to see common sense prevail. That said, the picture is still not completely clear:

  • If your record on the national database has not yet been created, you can express your wish not to be added;
  • If your record has been added but not yet used, you can ask for it to be deleted;
  • If your record has been created and used, you can’t ask for it to be deleted, because “it will have been archived for ‘medico-legal’ reasons”.

That last exclusion only makes sense, of course, if the records held by your GP are no longer considered to be the authoritative version of our healthcare history. Otherwise it would suffice to take a copy of that archive, forward it to your GP and delete the original.

Something, somewhere, still doesn’t add up.

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2 thoughts on “The "cost of privacy" equation is still out of balance

  1. Presumably the not-to-be-added wish has to be authenticated and stored somewhere? On a national database perhaps?

  2. Robin Wilton says:

    This has already surfaced in practice a couple of times with Utilities Who Shall Not Be Named…”Please stop cold-calling me, and take me off your marketing database””I’m sorry, we can’t do that””Why not?””Well, we have to keep your record on there, so that we know who not to call…””Well, why don’t you just delete my record and only call people whose records are on your system?””The system won’t let us do that”.”aaaaaaaaaaaaaaaaaaaagggggggggggghhhh!”

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