Government reveals public opposition to patient data access

02 Dec 09

The Department of Health said it would set up pilot schemes to test the best way of gaining patient consent, after a consultation showed over half of the general public were opposed to researchers having unsolicited access to identifiable data from their records.

The move comes after ministers were forced to shelve plans in the NHS Constitution in February to allow themselves the power to grant access to researchers to identifiable patient data.

The victory by GPs and other campaigners led to warnings from top research organisations that restrictions on access to patient records would harm patient care.

The Government’s long-delayed report on a public consultation held at the end of last year, finally published this week, cements opposition to handing over patient data for research.

The consultation had 1,600 responses and 53% of the general public said identifiable data should never be used without consent.

Unauthorised use of data from ‘sealed envelopes’ in a patient’s record was only supported by 30% of the public and only 24% of the public thought linked anonymised data should be used for ‘additional purposes’, such as research or for improving public health.

A spokesperson from the Department of Health said it will set up pilots in Hampshire, the Isle of Wight, Birmingham and Nottingham to explore means of patients giving consent records viewed for research purposes.

‘It is clear that the public expects their consent to be sought if the data used is identifiable. This means we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records.

‘We intend to set up a number of pilots across the country in order to discover how best to preserve confidentiality and consent while also facilitating information being used in medical research,’ she said.

The pilots will report back with a ‘preferred mechanism’ in June 2010.