Data death/data lives

Saw this report in today’s Guardian having just read the Connecting for Health 05/06 business plan. Surely if there’s one thing that would get the medical profession motivated about the benefits of C4H its that in a few years it will as a result (see Financial Times article on Monday) in an unparalleld national dataset on patient health which can be mined? But that opportunity will be wasted if the bureaucracy issue is not sorted:

“Tens of thousands of lives are being lost every year in the UK because medical researchers are hampered by bureaucracy in obtaining patient data, according to scientists. A report published yesterday by the Academy of Medical Sciences said that large population-scale medical studies are in jeopardy because of an “undue emphasis on privacy” by regulators.”

1 thought on “Data death/data lives

  1. Among doctors, research is a minority pursuit. Of course doctors appreciate its fruits, but can strain under the task of managing the torrent of information it engenders.

    Most patients care passionately about their privacy. Confidentiality is an essential feature of the medical consultation, and the only way either party can break it is through express written consent, or rarely, subpoena. It is privileged information. The NHS is leaky enough as it is.

    You might think anonymising the data would be easy, but in fact it isn’t. There are rather few people who both broke a leg on the 23 August 1974 and then had a left upper molar filled on 17 October 1983 for example. (presumably, haven’t got access to such a database). Two innocuous bits of health information could then be used to find more sensitive material.

    I knew a German psychiatrist who kept two sets of records: one the hospital set, and the second, a small card file of expecially sensitive information that he kept locked and administered personally. You can be sure such systems would proliferate in the advent of a national NHS database. I think a sensitivity over the uses to which the Nazis (and the Stasi come to that) put Germany’s orderly state records underlay this. Everyone thought it was rather paranoid, or at any rate I did (I was a bit shocked actually), but I understand his fears much better now.

    It is in nobody’s best interest, neither the doctor’s nor the patient’s, that we censor our discourse for fear it may later be harmful or embarrassing. So doctors take the responsibility of keeping health information private very seriously. Back in 1996 the BMA took the advice of Ross Anderson and said such a database would not be built. There’ll be stuff about it on the BMJ. I think it was around 1996 this really came up. It’s a tricky one and no mistake.

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