A Department of Health initiative could start a consumer revolution in healthcare research, claim its supporters. Annabelle May reports
The closed world of government research is finally opening up to consumer involvement, thanks to a Department of Health initiative hailed as 'unique and unparalleled in Whitehall'.
The initiative could even start a consumer revolution in healthcare research, suggests Ruth Evans, director of the National Consumer Council and chair of the groundbreaking standing advisory group on consumer involvement in the NHS research and development programme.
Ms Evans pays tribute to the influence of the first R&D director, Professor Sir Michael Peckham, and to the commitment of health minister Baroness Jay - then in opposition - for making the advisory group's launch possible two years ago.
Ms Evans knows Whitehall well. Unlike the Consumers' Association, the NCC does not test products and services but develops 'robust, reliable and persuasive' policies - and helps consumers speak for themselves.
Recent NCC health work has included a review of long-term care proposals, achieving new consumer rights in the NHS complaints process, and analyses of disease management and developments in primary care.
'And we're listened to,' Ms Evans points out, adding that this government is very different from its predecessor. 'They've asked to meet us, rather than us asking to see them. There's a tremendous difference in attitude and culture towards consumer organisations.'
But it was part of a programme set up by the previous government which has ensured that consumer interests are represented at the heart of NHS decision-making about research.
The national R&D strategy included a commitment to involving consumers in research as active participants in deciding which research should take place.
The group's statement of aims and values could help to convince critics who say that the whole programme has been hijacked by the medical profession (see box).
'It's not a consumer group, but a group with expertise,' explains Ms Evans. Members include researchers, advocates, clinicians, academics and managers. All have experience of involving consumers in health research.
The group has a secretariat located in the NHS Executive, and 'a significant budget' for the programmes of commissioned research which it can recommend to the central R&D committee.
'There is the very highest level of commitment,' Ms Evans says, adding: 'It's so encouraging that the Department of Health is supporting a group like this - no other department has done.'
The group's vice-chair is Iain Chalmers, director of the UK Cochrane Centre, part of the Cochrane Collaboration, an international network which aims to inform healthcare decision-making by promoting access to databases of reliable, up-to-date evidence on outcomes.
He has no doubt that patients and consumers must be involved in setting the research agenda: 'It's so obvious to those of us who have been researchers working with consumers, that it's second nature to me,' he says.
'As a researcher, I wouldn't think of organising research without finding out what the people most affected by the results think about the design.'
But as Ms Evans points out, consumer involvement in research is 'an extremely new notion', and others may need to be convinced about its benefits.
Some likely sources of resistance were spelt out recently by a colleague of Dr Chalmers - Alessandro Liberati, who heads the Italian Cochrane Centre.
Describing a recent Brussels conference on breast cancer, he stressed the importance of lay people working with professionals, scientists and policy makers to improve prevention, treatment and quality of care.
But Dr Liberati also wrote in the British Medical Journal that the quality and relevance of much clinical research still fell short of patients' needs because of the 'paternalistic attitude' of healthcare professionals, while drug company-funded projects were likely to be motivated by their own financial interests.
His concern that consumers are too often ill-prepared or too intimidated to ask questions is echoed in the group's first report, Health Research: what's in it for me?, due out shortly.
Explaining that consumers often lack peer support on decision-making bodies and can find committee structures inhibiting, the report recommends that resources and training must be made available, and says that at least two consumers should be invited to serve on such bodies.
The group has identified themes for further exploration, including a review of ways in which consumer perspectives differ from those of professionals.
As examples, Dr Chalmers cites women's perceptions of pain in labour, and quotes studies which reveal that people with diabetes are concerned about immediate quality of life in terms of drug side-effects, while their doctors are focusing on preventing long-term complications.
Already, all non-commercial R&D funders in the NHS are required to involve consumers at every stage of the research process, and the group is due to contribute to the work of two other central research and development committee advisory groups looking at organisation and management, and at emerging technologies.
Their first 'learning conference' is planned for 28 January. 'There's no point trying to work out whether all this is a good thing,' Dr Chalmers says. 'It is a good thing.'
For further information, contact group scientific secretary Bec Hanley, tel/fax: 01273-553382.