Clinical guidelines: involving patients and users of services

Abstract

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.