Objectives To identify the extent to which the Cochrane Collaboration involves consumers (patients, carers, patient and non‐patient members of patient/consumer organizations) as members of Cochrane Review Groups (CRGs); to explore the emphasis CRGs place on identifying and collecting information on outcomes identified by patients as being important indicators of quality and effectiveness of treatment and care (‘patient‐defined outcomes’). Method A postal questionnaire designed by The College of Health, a UK patient organization, was sent in January 1998 to all CRGs registered with the Cochrane Collaboration on 1 January 1998 (n = 42). Results and conclusions Replies were received from 35 CRGs, a response rate of 83% and 33 questionnaires (79%) were completed. The survey revealed that CRGs varied in the extent to which they had recruited consumer members: almost one third of respondents said their CRG did not have any consumer members. There was also no apparent consensus across CRGs on the importance attached to identifying and collecting information on patient‐defined outcomes or on integrating such information into their activities. It is hoped that differences between CRGs may inform discussions as to whether and how the Cochrane Collaboration might address the issue of patient‐defined outcomes in the future.
Stakeholders are all those who have a legitimate interest in a guideline. They include healthcare professionals, patients and caregivers, public and private funding bodies, managers, employers, and manufacturers. Their engagement is justified for several reasons, including limitations of evidence, principles of transparency and democracy, ownership, and potential policy implications. They have a role to play at different points of guideline development, but their involvement can be complex. To be successful, stakeholder engagement needs to be inclusive, equitable, and adequately resourced.
National clinical guidelines can provide a way for health professionals, patients and users of services to work together to make decisions about care. For guidelines to have a positive impact on the quality of care, however, it is important that they are valid. The validity of a guideline is determined by its evidence base. Patients and users of services can contribute evidence about the quality of care and its outcomes which can be used to enhance a guideline's validity. Patient evidence can be accessed from existing research studies, from studies designed expressly to examine patient views or from the direct contribution of patients and users of services to guideline development. A seminar was held to debate the timing and ways in which patients and users of services are most effectively, and to the satisfaction of all, involved in developing clinical guidelines. They key factors influencing the success of health care professionals, patients and users of services collaborating to develop guidelines were identified. These include: deciding who should represent an identified patient community, supporting patient representatives by ensuring that more than one representative joins a group, ensuring there are links with patient representative groups, and that all participants feel prepared and so on. The seminar also identified questions about collaborative working requiring further research.
Formal studies addressing optimal processes in developing guidelines are limited, and experience from guideline organizations supplement the formal studies. When resources are available, guideline development groups should aim for multidisciplinary groups, including patients. Prerequisites for a multidisciplinary group include: a strong chair experienced in group facilitation with broad acceptance in the group, training the group in guideline methodology, and professional technical support. Formal consensus developing methods have proved effective in reaching agreement on the final recommendations.
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