The role of consumers

Consumer involvement has been a strong feature of the CSG from the very beginning. This is because skin disease greatly affects the quality of life of the individual and because much of the trial work in skin disease has been dominated by answering questions that are important to the pharmaceutical industry. Consumers help us to redress that imbalance. At present (Autumn 2002) the skin group has 55 groups working on topics, both common and rare, such as acne, alopecia, bullous pemphigoid, eczema, excessive sweating, psoriasis, skin cancer and vitiligo. About 30 active consumers are involved at many levels. Initially they were recruited mainly through the National Eczema Society and the Vitiligo Society, but since we decided to always include a relevant consumer in the peer-review process, more consumers have become involved in this way. Increasingly consumers also take part in writing the review; two of the reviews in preparation have a consumer as lead author.

Our experience of consumer involvement is both positive and challenging. Consumers have little or no access to the support systems and infrastructure that professionals take for granted (for example information technology, administration, photocopying etc.). They have to meet many expenses themselves, from travel to telephone bills, and funding is often a major problem for them. However, their enthusiasm is boundless and infectious. Our consumers are highly motivated, and two of them even won stipends to attend the annual Cochrane Colloquium in Cape Town. Many of them also attend the UK-based meetings of the Collaboration and the CSG, and some are involved with the Collaboration at national level.

In particular consumers help us to ensure that our reviews are:

• relevant to patients and carers (i.e. outcomes are patient focused)

• written in language that is accessible to intelligent lay people.

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