Out of sight - out of mind? How to let consumers participate from all over the world.

Article type
Authors
Richter B, Bandeira-Echtler E
Abstract
Background: The integration of consumers is an integral part of every Cochrane Review Group(CRG). Various stages of involvement are possible, ranging from advice on editorial issues to full integration into every element of the production of systematic reviews and meta-analyses. Due to the skewed distribution of CRGs with headquarters mainly in Europe and countries with advanced infrastructure, consumers from these areas have a better chance to influence CRGs agendas. There is a danger that consumers perspectives from other parts of the world are not perceived resulting in biased research.

Objectives: 1. Within the scope of the Cochrane Metabolic and Endocrine Disorders Review Group (CMED), consumers preferences and needs from as many countries as possible were explored and evaluated. A network focusing on diabetes, obesity and other endocrine diseases was established. 2. Through continuous publications in our Cochrane Library module and our web page (cc-endoc.info) consumers from various social and cultural backgrounds will have the opportunities to express their points of view. Thereby, we hope to influence future research priorities and funding bodies to bridge the gap between easily identifiable and hidden health care topics.

Methods: As a first step patient and professional organisations were contacted to ask for permission to participate in this project. After a positive response, a structured questionnaire was sent to these organisations. The core elements of the questionnaire consisted of: - Origanisational data like area of representation, responsibilities, number of members, and funding structure. - Access to health care. - Relevance of the focus disease compared to other health problems and general living conditions. - Alternative ways and methods in treating the condition in question. - Problems with health care providers. - Cooperation with industry, political bodies and other organisations. If possible, answers from consumer and professional organisations were compared to elucidate specific concerns and opinions. Within the professional associations the input of patients and also their influence were investigated. In order to establish an ongoing consumer participation from various parts of the world a network will be instituted by means of an interactive homepage environment and continous publications in CMEDs Cochrane Library module. Ultimatively, CMED intends to contribute to the dissemination of the easily neglected socio-cultural diversity of consumers preferences, needs and attitudes.

Results: Will be presented during the Cochrane Colloquium.