Author: Eva Pastor
Date: 12-03-09 16:08
Source: publicservice.co.uk
URL: http://www.publicservice.co.uk/news_story.asp?id=11486
Date published: December 2nd 2009
Privacy needed for patients' data
Wednesday, December 02, 2009
Approximately one half of patients and the general public believe that identifiable patient data should never be used for research without consent.
Whilst only 11 per cent of researchers believed this should never happen, 53 per cent of the general public and 46 per cent of patients thought it was unacceptable without prior consent.
But more than half of researchers thought patient identifiable data should be used without patient consent if it had first been reviewed by the Patient Information Advisory Group (PIAG). Only 30 per cent of both patients and the general public agreed.
Letting researchers search records without PIAG approval was supported by just 7 per cent of the general public and 8 per cent of patients. 29 per cent of researchers thought it was acceptable.
The responses came in a consultation on the secondary uses of patient data. The consultation on the Public's, Patients' and Other Interested Parties' Views on Additional Uses of Patient Data was launched in September 2008. It explored the use of patient data for healthcare research, auditing the quality and safety of care, improving public health, screening for disease and planning for the improvement of the health service.
Part of the controversial electronic patient records scheme will be a "sealed envelope", where patients can ask for their most sensitive details to be placed. The envelope can then not be opened unless in an absolute emergency or with the express permission of the patient.
One of the proposals made by the NHS was for anonymised "sealed envelope" data to be used for research purposes. Almost half of respondents to the consultation believed this was acceptable, but once again there were far more researchers in favour (75 per cent) than patients (25 per cent) and the general public (30 per cent).
Three in five respondents thought that researchers should be to search patients' records to find people who might be approached to take part in research studies. However, the balance between researchers and the public and patients was unclear. Almost half of respondents thought this should only happen with approval of the PIAG.
Over a third thought it was never acceptable to use identifiable data for research purposes without consent. Two out of five respondents thought that patient identifiable data should be used for research purposes without consent if the project is reviewed and approved by both an NHS Research Ethics Committee and the Patient Information Advisory Group (PIAG).
To scrutinise the use of patient data, the consultation asked if an information custodian would make a difference. Almost two-thirds of patients and the general public thought it would be "useful", with only 33 per cent of patients and 31 per cent of the general public doubting the idea.
Connecting for Health said it will publish its own response in the next six months.
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