A consumer network for haematological malignancies

Nicole Skoetz, Consumer Co-ordinator, Cochrane Haematological Malignancies Group, First Department of Internal Medicine, University of Cologne, Kerpener Str. 62, 50924 Köln, Germany. E-mail: nicole.skoetz@medizin.uni-koeln.de Medical research requires participation of patients and related persons to ensure all relevant interests in medicine are considered. Therefore the objective of the Cochrane Collaboration is to involve so called ‘consumers’. This paper examines how the Cochrane Haematological Malignancies Group (CHMG) developed and implemented strategies to build a consumer network and to initiate and support consumer involvement. The CHMG created the position of professional consumer coordinator (funded by the German Cancer Aid) to enhance the co-operation between consumers and the review group. Over a period of 15 months and through the intensive use of various media a total of 22 consumers contacted the CHMG for participation in 2-day workshops. The desired outcome of the project 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. Of the 22 consumers who had initially expressed an interest, 17 attended the basic training courses and eight the advanced course. Overall the evaluations revealed general satisfaction with the workshops. One problem though in non-English speaking countries is the language barrier, and in this respect most consumers need constant support. At present 10 German consumers are involved with the CHMG. Consumers are eager to be educated in the process of peer review when appropriate training opportunities are provided. Therefore health authorities are asked to continue to support such projects. 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 research,1 although consumer involvement in health care issues is being increasingly promoted. However, until now patients rarely participated in the planning and conduct of medical research or the interpretation of data.2, 3 Consumers have the experience and skills that complement those of clinicians and scientists4-6 and they argue for research that addresses issues of clinical relevance and leads to an ethically acceptable trial.7-10 Patients, users of health services and representatives from patient organizations, so called consumers, bring unique perspectives to the identification and definition of problems and help to balance an overly medical approach. They know what it feels like to have a particular disease and undergo the treatments with their various side-effects. Involving consumers as colleagues can benefit both consumers and the physicians and counter increased costs and the additional study expenditure.9, 10 To foster effective partnership between consumers and medical practitioners, consumers need basic scientific training dealing with scientific concepts, data analysis and interpretation of results, and they need this presented in an easy to understand way. Moreover consumers are prepared for effective contact with scientists.5, 6, 10 Worldwide there are many medical journals where physicians and scientists describe results of research and treatment of diseases. The doctor, who wants to find the best therapy for his patient, is confronted with an unbelievable mass of literature. Sometimes different research teams get different results. Archie Cochrane (1909–1986), a doctor and epidemiologist, noticed these problems. It was his idea to search all clinical trials dealing with one topic and summarize them as a systematic review (Cochrane review). Cochrane reviews are summaries of trials on health care treatments and the most up-to-date research evidence about health care. Fifty-one collaborative worldwide review groups (covering most common health-care conditions) prepare and regularly update Cochrane reviews of clinical trials data. Completed reviews are then published in the Cochrane Library. These reviews are produced by an internationally respected independent research organization, the Cochrane Collaboration (CC). The CC is a registered charity that wants to help people make informed decisions about health care and also provides resources to help consumers understand scientific research in health care. The Cochrane Haematological Malignancies Group (CHMG) is part of the CC with an editorial base in Cologne. The CHMG systematic reviews appraise the efficacy and effectiveness of the therapy of malignant lymphomas and leukaemias. The CHMG has contact with numerous German patient organizations, study centres, the Cochrane Collaboration and the Cochrane Consumer Network (CCNet). Cochrane reviews need to be acceptable to health-care consumers as well as to health-care professionals, so consumer involvement in the work of collaborative review groups is encouraged by the CC. The CC aims to bridge the gap in the rapidly increasing information transfer between medical sciences, the clinician and the patient. A reading of the information submitted by Cochrane review groups in the Cochrane Library demonstrates that it is difficult to achieve consumer participation11 and recruit consumers for several reasons.12 First, consumers do not generally know about the CC and do not see value in their participation. Further barriers to involvement include lack of motivation and information and in the case of cancer patients, they are sometimes too ill to take advantage of these opportunities. Few groups offer training opportunities to learn more about Cochrane.4, 13, 14 The key tasks for consumers are participating as co-authors, peer-reviewing protocols and reviews to help make them easier to understand, commenting on published reviews and creating structured consumer synopses or summaries of reviews.15-17 Language was repeatedly mentioned as a barrier to consumer involvement, thus reducing the scale of operations for non-English speaking consumers.15 In appreciation of the roles of the consumer, they at least should be mentioned in the Cochrane Library and possibilities of financial support should be considered.15, 18 The major role of the CCNet is to support and coordinate consumer participation in the systematic review process within the CC (http://www.cochrane.org/consumers/homepage.htm). One of the CHMG objectives is to facilitate and encourage consumer involvement by offering consumer training and support. The CHMG promotes active consumer involvement in all phases of systematic review development thus making the results accessible to the general public. The pilot project ‘building a consumer-network for the CHMG’ funded by the German Cancer Aid aims to support consumers and Cochrane groups in making this process work. Both consumer coordinators have established mechanisms for creative and productive consumer involvement as equal partners with health professionals and scientists. Challenges to be overcome are language barriers and a need for skill development. To find willing individuals is very time-consuming. We sought opportunities to inform consumers about CC and patient involvement at patient conferences and scientific conferences, via the CHMG website and other publications. Support suggested for consumers included: practice peer review sessions and regular opportunities to meet other consumers. As such, periodic meetings will be arranged making the support of consumers optimal. These innovations were completed by training, one-to-one-support and discussion. Consumer input can help ensure the content and terms used in a Review can be widely understood, will be credible, usable, understandable and of a high standard. Consumers have to learn new skills before feeling competent to comment. The CHMG performed basic training courses on evidence-based medicine (EBM) for consumers to enhance patient involvement in the appraisal of systematic reviews and the development of patient information. We developed, implemented and tailored successive training workshops to empower interested people. The conceptual design is based on national and international experiences. So far three 2-day workshops have been conducted. Topics covered in these workshops included an introduction to CC, 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 project has a strong emphasis on EBM and will follow strict international CC guidelines. A total of 17 people attended the basic workshop and eight the advanced workshop. The workshops were free of charge and we provided refreshments and reimbursed travel expenses. The first three workshops were run in autumn 2003 and spring 2004, and the next one was September 2004. Details are available on the CHMG web site http://www.chmg.de (German). In general, our consumers were provided with a checklist (check boxes to tick ‘yes’ or ‘no’ to questions about the review) and glossaries. They were free to comment on as few or as many aspects as they liked or raise any thoughts about the topic. A brief summary of the results of a review in plain language for consumers and non-specialist readers was developed in co-operation with volunteers to enhance the accessibility of reviews and disseminate findings to a wider community internationally. Preliminary findings from the quantitative data of the workshops indicates an increase in positive views among consumers, who felt that the concerns of patients were extremely influential in the review process. All participants appear to have found the research experience of practical benefit to them, and they were generally positive about their experiences (Fig. 1). Consumers in the CHMG. Initially there were two international consumers actively involved; now there are six – from Australia, Canada, Netherlands, USA and 10 German volunteers as well. Three patients educated in our workshops are active in the Cochrane Breast Cancer and Cochrane Colorectal Cancer group. In the last 15 months eight protocols and three reviews were refereed, and the consumer synopsis of four existing reviews were translated into German. The best and most comprehensive consumer feedback we have seen was when we ran a focus group on a review – here we learnt that consulting, listening and discussing were more valuable than just sending out forms. We keep consumers informed and maintain an ongoing dialogue with them, providing extra assistance and explanations. Most participants in these workshops were members of a self-help group. Beside their own interest in appraising clinical trials, they were also interested in taking their new skills back to other members of self-help groups. Although consumers have not had a major impact on the research process in the past, we propose that projects such as ours offer the tools and the incentive for patients to participate at many levels of clinical research design and implementation so that this model can be incorporated into other Cochrane groups. Our project demonstrates that consumers can contribute constructively and meaningfully in the review process if support is provided. They help to identify key research issues and questions that reflect patients’ needs. We plan to implement Focus Group meetings to discuss the drafts of protocols and reviews as a way of supporting consumers and overcoming the barriers to communication. It is still unclear what impact the comments of consumers have,1 so the influence and effectiveness of consumer participation will be measured and evaluated progressively. This work was supported by the Deutsche Krebshilfe, Grant No. 70–3067-En 6 and is part by the Kompetenznetz Maligne Lymphome, supported by the Bundesministerium für Bildung und Forschung (BMBF).

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