Participation of Patients in the Development of Clinical Guidelines: A Selective Country Comparison in a Narrative Review

Abstract

A clinical practice guideline aims to optimize patient care by recommending diagnostic or treatment pathways, based on the best available research and practical experience. Therefore, the needs and preferences of patients and their families should be incorporated. The aim of this study was to examine regulations and standards of patient involvement in guideline development, using a selective comparison of countries. Information was extracted from publicly available websites and guidelines development manuals for the United Kingdom (UK), the United States, Canada, and Australia. They were compared and discussed in a narrative review. In the UK, at least two people from among patients or the public must be involved in all guideline development committees and during all stages of the development process. The US National Academy of Medicine recommends active participation in guideline development groups by patients with disease-specific experience and patient representatives from the public. The Canadian Task Force on Preventive Health Care wants patient preferences to be involved, especially in the development of final guideline recommendations and usability testing. In Australia, guidelines receive the approval or seal of approval of the National Health and Medical Research Council if at least one patient representative can be shown to have been a member of the committee and to have been involved in the entire process of guideline development. The selective country comparison shows that patient involvement in guideline development and the binding nature of the rules vary considerably, and that there are no uniform standards for involvement. Many issues of involvement are unresolved, and special sensitivity will be needed to bring together the life and experiences of patients/laypersons and the medical system on an equal footing.