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Huge expansion revealed in access to patient records

By Steve Nowottny

NHS bosses have unveiled plans for a massive expansion in the use of patient records for research purposes.

Connecting for Health has launched a 12-week public consultation on how the NHS should use patient data for ‘secondary uses', such as medical research, disease surveillance, screening and needs assessment.

The consultation seeks views from medical leaders and patients on existing confidentiality safeguards and how they could be developed. While researchers already have some access to patient data through the Secondary Uses Service, the rollout of electronic care records sets the stage for a significant increase in the use of patient data for purposes other than clinical care.

Professor Sir Alex Markham, professor of medicine at the University of Leeds and chair for the Research Capability Programme said: ‘With new information technology in the NHS there are new opportunities for the health research community to carry out their research more effectively, which will benefit us all.'

‘There is a need to reconcile the requirement for absolute confidentiality with the need for people to be involved in medical research.'

Speaking at the consultation's launch, Julie Clifton, Connecting for Health's Acting Director of Care Record Development, said she had personally been convinced of the need for researchers to have greater access to patient data after being diagnosed with cancer in 2006.

‘When you go through treatment for breast cancer, I was acutely aware that every step of the way it was influenced by research,' she said.

Under the proposals, researchers who apply to the NHS Research Ethics Committee can be granted access to pseudonymised and in some cases patient identifiable data, as well as anonymised records.

Patients who have given implied consent for a Summary Care Record to be created for them will not be asked for further consent before their data is shared - but they may be able to opt out under the Data Protection Act.

Data will also be collected automatically from other NHS systems including Choose and Book and the Electronic Prescription Service.

Dr Mark Davies, a GP in Hebden Bridge and the Information Centre's newly-appointed medical director, said: ‘This is the start of a mature debate between the NHS and patients on how we use information to improve care.'

But the consultation will also raise questions over the extent to which the NHS should be sharing data with external researchers. Last year Connecting for Health's subcontractor BT suggested in a written submission to the Health Select Committee that pseudonymised patient data could be shared with pharmaceutical company researchers to earn the NHS cash.

And Professor Michael Thick, chief clinical officer for NHS Connecting for Health, admitted it was a difficult political climate to launch a consultation on data use.

‘‘We're well aware that large organisations have a habit of losing data at the moment and that's clearly going to have an impact on the public's view,' he said.

The consultation

The Connecting for Health consultation on additional uses of patient data is gathering viws from the general public, patients and NHS staff, researchers and professional bodies.

For more information see the
Connecting for Health website
or call 0161 902 1100.

NHS IT: researchers stand to get far more access to records NHS IT: researchers stand to get far more access to records

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