Consumers and research

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Consumer involvement in clinical research is rare in dermatology. Most PSGs have the support and encouragement of research as one of their objectives. Many strive towards finding a "cure" for their particular condition, however unrealistic this may seem to health professionals. In general, however, PSGs tend to give financial support to projects that researchers have already chosen (i.e. the research agenda is mainly driven by university-based academics). Whilst not disputing their ability to carry out high-quality research, the "basic science" discoveries from such research rarely find their way back to the patient. The priority given to research over support and education varies between organisations.

PSGs do fund research, but the sums available from this source are modest compared with other disease areas. Among the UK skin groups. the biggest funder of research is the Psoriasis Association. Like many other PSGs, the association has a Medical and Research Committee to vet projects for research funding. The lay members on this committee help to ensure that the patient's perspective is included in their discussions. Projects are always referred to the National Council for a final decision and at this stage are sometimes passed back to the

Medical and Research Committee for review, often for a more patient-based approach.

Pharmaceutical companies fund the highest proportion of dermatological research projects, and they have been reluctant to involve consumers in such research in any meaningful way. Companies can establish strong relationships with groups, and sometimes work with them to devise quality-of-life questionnaires. Although these studies are mainly for marketing purposes, the results may also influence the choice of research topics and the design of clinical studies. For the most part, pharmaceutical companies tend to approach PSGs mainly for help with recruiting patients for trials, and most PSGs have contributed in this way. Because pharmaceutical companies often regard some of the data contained in their protocol to be commercially sensitive, PSGs rarely get much information to give to those wishing to take part in trials, apart from the exclusion criteria. Often participants are not given adequate information, are not thanked for their involvement and are not informed of the outcome of the trial. However, PSGs, because of the cumulative and combined experience of their members, have good insights into what research is needed. Skin diseases are by and large chronic illnesses with much higher morbidity than mortality. Patients who have been managing and living with their disease for many years have in some ways become experts at coping. However, they are also unaware that they can contribute to clinical research in other ways, not just as passive "subjects". Although their research concerns may differ from those of professionals, patients are well placed to pose relevant research questions and to contribute to the design of studies.

Some organisations, like the Raynaud's and Scleroderma Association, are beginning to suggest areas of research, based on their members' experience. For example, the association decided to offer funding for a project on calcinosis - a big problem for many people with the disease. This is not a particularly attractive topic and can be difficult to tackle. After several months waiting for a worthwhile proposal, a project was started in 2002. The association is also keen to fund a project to investigate the causes of childhood scleroderma. It is also worth noting that the UK National Eczema Society supported and funded the double-blind controlled study conducted at Liverpool University of the effect of housedust mites in adults and children with eczema.7 Other organisations, such as the National Eczema Association for Science and Education based in the USA, have set up and supported international research meetings.

PSGs can play an important role in educating patients about ways in which they can become involved in clinical research. The National Eczema Society recognised this and encouraged its members and other dermatology patient groups to volunteer to join the Cochrane Skin Group (see Chapter 4) as consumer representatives. Under the auspices of an umbrella organisation of UK skin support groups called the Skin Care Campaign (formerly a project of the National Eczema Society), a meeting was held to inform consumers about the Cochrane Collaboration and how they as consumers could contribute to its work. Some consumers subsequently contributed by hand-searching journals, commenting on protocols and reviews, translating reviews and co-authoring a review (on vitiligo). From this meeting, a focus group was set up to help identify suitable questions for eczema research.

Examples of organisations that are committed to encouraging more consumer involvement in research should also be mentioned. Consumers in NHS Research was set up in 1996 to advise the NHS on how best to involve consumers in research and development (R&D). Members are drawn from the voluntary sector, research organisations, health information providers and health and social services management. The group aims "to ensure that consumer involvement in R&D in the NHS improves the way that research is prioritised, commissioned, undertaken and disseminated". This includes persuading researchers of the importance and value of consumer involvement by indicating ways in which consumers can be part of the research process, and offering information, advice and support to consumers, researchers and NHS employees through the Support Unit. Useful publications, available free on their website, include "Research; What's in it for Consumers?" (1998), "Involvement Works" (1999), and conference and workshop reports.

CERES (Consumers in Ethics and RESearch), was set up in the late 1980s to promote the idea that consumers can contribute to the design and conduct of medical research. CERES is an independent forum for those who believe that health service users should be involved at every stage of research affecting them and provides users with the means of publicising their views on new treatments and research. It is also for members of ethics research committees, health authorities and voluntary organisations. CERES is an independent charity run entirely by volunteers, with no office or paid staff, but it does have a website. CERES holds open meetings and publishes newsletters and reports, as well as leaflets to help patients taking part in research to understand the process and make informed decisions.

The Cochrane Consumer Network is a part of the Cochrane Collaboration. Its members include individual consumers as well as community organisations around the world. The network gives much needed support and training to consumers, encouraging them to take part in the work of the collaboration by helping to identify questions for review from the viewpoint of the person with the health problem, searching for the trials, commenting on drafts of reviews and protocols and helping to disseminate the reviews. It works to keep consumers informed, develops training materials, helps to demystify scientific jargon to make reviews more accessible to the general public, and publishes a digest of new additions to the Cochrane Library, including full consumer summaries of reviews. Its website provides a means of commenting on issues and reviews and has links with other sources of evidence-based health care on the internet.

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