Strategies to build a consumer network for the Cochrane Haematological Malignancies Group (CHMG)

Nicole Skoetz, Andreas Engert

Background: Medical research requires participation of patients and other parties to ensure that all particular interests in medicine are considered. In Germany, as in many other countries, no structures exist for consumers to play an active part in re-search, although consumer involvement in health care issues is being increas-ingly promoted. However, only certain individuals in the general population are interested as well as capable of taking part in such projects.
Objectives: To describe how the CHMG developed and implemented strategies to build a consumer network and to initiate and support consumer involvement.
Methods: The CHMG created the position of professional consumer co-ordinator (funded by the German Cancer Aid (Deutsche Krebshilfe) to enhance the co-operation between consumers and the review group. Over a period of ten months and through the intensive use of various media (distribution of pamphlets at patient conferences, personal contact with self-help groups, and the inclusion of consumer-related topics on the CHMG website (www.chmg.de) a total of 22 consumers contacted the CHMG for potential participation in 2-day workshops. Topics covered in these workshops included an introduction to the Cochrane Collaboration, a basic introduction to statistical methods for evaluation of clinical trials and the critical appraisal of these trials. We also tried to demonstrate the importance of the consumer viewpoint and develop a process by which consumers are able to comment on protocols and reviews. The desired outcome is a consumer who can comment effectively on research in the form of systematic reviews and who is more likely to have the ability to interpret research results and become an informed consumer.
Results: 17 of the 22 consumers who had initially expressed an interest in our workshops, attended. The other 5 consumers (who were patients) were unable to attend because of an acute deterioration in their well-being. Overall the specially-designed evaluation form revealed general satisfaction with the workshop. One problem though in non-english speaking countries is the language barrier, and in this respect most consumers need constant support. Each consumer intends to represent the patient-perspective in Cochrane protocols and reviews by peer-reviewing. At present, 10 patients are interested in attending a follow-up workshop dealing with evidence-based medicine, patient involvement in the appraisal of systematic research and database searching.
Conclusions: When appropriate training opportunities are provided, consumers are eager to be educated in the process of peer review so that they can participate in medical research, Therefore health authorities are asked to continue to support such activities and projects.

Ottawa 2004 O-003