Abstract
PRIMARY TRACK
Guideline development
SECONDARY TRACK
Patient/family/stakeholder roles in guideline development
BACKGROUND (INTRODUCTION)
Active patient participation in clinical guideline development is an emerging phenomenon. Arguments for patient participation are enhancement of legitimacy of decision making and increased quality and relevance of the results. However, patient participation in guideline development is methodologically still in an early stage of development and systematic reflections and scientific publications on this topic are limited. An inventory study, including a literature study and 46 semi-structured interviews, was undertaken. No consensus was found on the most effective form of patient participation in guideline development, but various recommendations were formulated, largely founded upon the Dutch situation. The goal of this study is to gain further insight in methods and conditions that enhance the effectiveness of patient participation.
LEARNING OBJECTIVES (TRAINING GOALS)
Gain insight in methods and conditions that enhance effective patient participation in guideline development. Understand how lessons learned can be incorporated in guideline development in order to optimize patient participation.
METHODS
An action research was conducted in the Netherlands in which the development of four guidelines was followed through participatory observation. The four case studies experiment with innovative methods for patient participation and are selected to represent a diversity of guideline topics. To assess the effectiveness of patient participation in a systematic way, an evaluation framework was formulated based on the findings from the inventory study, consisting of both process and outcome criteria.
RESULTS
The results show that final decisions in the guideline development process are often taken outside plenary meetings by a selective group of professionals, which causes a lack of transparency in decision making and brings patient participation to the level of consultation. Identifiable integration of patients' perspectives remains problematic.
DISCUSSION (CONCLUSION)
Structural support and possibilities for adapting the process to the needs and capacity of patients and patient organizations are crucial for effective patient participation. Innovative approaches and adaptations to the guideline development process can enhance optimization of patient participation.
TARGET AUDIENCE(S)
Academic researchers Guideline developer Guideline implementer Health care policy analyst/policymaker Allied health professionals Consumers' and patients' representatives