Development of a guidebook to promote patient participation in the management of ulcerative colitis

This paper describes the process of developing a guidebook for people with ulcerative colitis by involving patients and self-help groups from the outset. Medical information in the guidebook is based on evidence of effective treatment obtained from results of randomized controlled trials reported in the medical literature. Such information is presented in a way designed to empower patients and allow them to participate in making informed choices about their medical and surgical care. Initial evaluation in the form of feedback from patients has shown that the guidebook is well liked and easy to understand. The principles used in the development could be extended to devise similar guidebooks for other chronic conditions.