The Cochrane Skin Group has always had strong involvement from consumers (whether these be patients, people with a skin condition, or their carers) at all stages of producing our reviews. Nearly all our reviews include a consumer co-author, and all of our reviews are refereed by consumers working through a buddy system.
From the very beginning, consumer involvement has been a strong feature of the Skin Group. This is because the impact of skin disease is mainly on 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 there are over 100 active consumers who are involved in many different ways, e.g., as peer reviewers, as translators, and in two of our reviews the consumer is the lead author.
If you would like to join the Cochrane Skin Group and contribute in some way, please write to firstname.lastname@example.org.
Consumers are actively involved in the Cochrane Skin Group as authors, referees, translators, and handsearchers. Consumers can participate in the initial stage of deciding on a topic and framing the questions to be considered in the review. In this way, the topics chosen will be relevant and of interest to consumers and their families, and not limited to those that are of interest solely to researchers and doctors. Before a title can be formally registered with us we require the review team to have a methodologist and a team member with previous Cochrane Review experience and strongly encourage them to include a consumer as part of the team. Their participation is especially encouraged in ensuring that the outcomes are relevant to consumers and that the review is written in language that makes it accessible and meaningful to non-technical people.
In addition all our protocols and reviews are refereed by a consumer. Our review on vitiligo is led by a consumer. Consumers are active participants in our annual skin group meeting, the UKCC meeting and the Cochrane Symposia. They have led workshops and written and given papers about their involvement with the skin group in particular and Cochrane in general. They help enthusiastically with the dissemination of our findings and with publicity for the collaboration.
We don’t expect consumer co-authors to have research expertise or knowledge of statistics and search strategies. In fact, it is better if a consumer doesn’t have a scientific background. A consumer co-author does not need to understand the review process before they join a team, either, because there are plenty of Cochrane resources for them to learn from:
- There is a specialist field within Cochrane that co-ordinates and facilitates consumer involvement called the Cochrane Consumer Network (CCNet) (http://consumers.cochrane.org/). CCNet has produced the following introductory welcome packet for consumers new to Cochrane: http://community-archive.cochrane.org/sites/default/files/uploads/CCNet_Welcome_Packet_Jan2011.pdf as well as creating a guide for commenting on reviews.
- The following pdf from Sense About Science (“a charity that equips people to make sense of science and evidence”) explains what systematic reviews are: http://community-archive.cochrane.org/sites/default/files/uploads/SenseAboutSystematicReviews.pdf.
- Another informative resource that may be useful to someone new to Cochrane is the ‘YourHealthNet’ website, which explains Cochrane systematic reviews, using easy diagrams, text, audio, and stories from people using reviews: http://navigatingeffectivetreatments.org.au.
- How consumers can help the Cochrane Skin Group
- Consumers and the CSG
Would you like to share your experiences of being a 'skin' patient?
Here is your opportunity to share your experiences and perspectives as a patient with a skin problem. Please send in your short commentaries (no more than 2 sides of A4). Contact the CSG with your articles.
Here are 2 articles we have received so far:
From Purple Toes