UK health records should not be flogged off
Health watchdog barks
Posted in Government, 17th November 2008 12:57 GMT
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Harry Cayton was only appointed head of the health service data watchdog on 6 November, but he has wasted no time in putting the boot into how the NHS wants to treat patient data.
Cayton, the man who won UK citizens the right to opt out of having a centrally stored medical record, is unhappy with proposals which would allow medical researchers to trawl databases looking for people with certain medical conditions. They would then be allowed to write to these patients asking if, given their condition, they would like to take part in trials of new drugs or treatments.
This was spun as one of the joys of introducing electronic patient records for everyone. In effect UK researchers would have a big advantage over rival nations - they'd get access to a whole country's medical records.
Currently researchers have to ask GPs to identify patients with a condition they wish to study. The doctor then writes to patients asking if they are interested in taking part in a trial.
Cayton said the proposals to change this were "ethically unacceptable". He told the Guardian: "It would be saying there is a public interest in research that is so great that it overrides consent and confidentiality. That is not a proposition that holds up."
Instead of direct access Cayton suggests a system which would allow browsing of anonymised files for conditions. This could then create letters to be sent to patients without researchers getting full access to identifiable information.
Cayton, chair of the Patient Information Advisory Group, has written to health minister Alan Johnson outlining his concerns. ®
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