Charities and researchers call for greater awareness of patient data use

Posted on November 6, 2012 by

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Medical research charities and the Academy of Medical Sciences have written to the Times today (£), welcoming a consultation on changes to the NHS constitution and calling on the NHS and Government to work to raise public awareness of the benefits of sharing patient data and the safeguards that are in place to protect personal confidentiality. Sharmila Nebhrajani, AMRC chief executive, was one of the signatories. The letter is in response to proposed changes to the constitution that will clarify how patient data collected by the NHS will be used. You can read more about that in Liz’s blog post here.

Confidential patient information must be kept safe and secure but it must also be shared more effectively

Sir, A poll this year found that 82 per cent of people think it is important for the NHS to offer opportunities to take part in healthcare research, including clinical trials. The consultation on the NHS Constitution announced yesterday is an opportunity to achieve this, for the benefit of all.

Patient records are an invaluable resource for research. They provide data that can be used to understand the causes of disease, to track infections, to recruit people to clinical trials, and to investigate the safety and effectiveness of drugs, treatments and interventions.

Research based on patient data should be routine. Yet for too long it has been held back by a complex and confusing access system. We therefore welcome the consultation, and the clarification about how patient records should be handled.

Confidential patient information must be kept safe and secure but it must also be shared more effectively. Rigorous safeguards protect patients when researchers, from academia or industry, access their data. Wherever possible, researchers use anonymised information. Where this is not possible, individuals must give consent unless there are exceptional circumstances. All research must be approved by an ethics committee, and there are strict controls on how data can be used.

Everyone is concerned that health data should be kept confidential, so it is essential that patients understand how and why their information is used. Revising the Constitution is an important first step, and we urge the NHS and the Department of Health to reinforce it by raising awareness of the benefits of sharing patient data and the safeguards that are in place.

Professor Sir John Tooke, Academy of Medical Sciences
Sharmila Nebhrajani, Association of Medical Research Charities
Professor Peter Weissberg, British Heart Foundation
Harpal Kumar, Cancer Research UK
Professor Sir Mark Walport, Wellcome Trust

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