Service user involvement in clinical guideline development and implementation: Learning from mental health service users in the UK

Abstract

The participation of service users and the public in the development of clinical guidelines is increasingly valued in international guideline programmes. This paper extends the findings of Harding et al.'s (2010) exploration of the views of service users who participated in developing NICE mental health guidelines. This analysis considered the relative value of personal versus professional knowledge and experience, the barriers to service users contributing effectively in guideline development, the unspoken ‘rules’ concerning decision making, and issues of power and group dynamics. We combine these insights with observations from research in guideline development and with advances in the recovery movement and in the shared decision-making clinical model to suggest areas of improvement in guideline development, notably: translating evidence to recommendations, optimizing the acceptability of treatment recommendations to service users, and reconciling different types of knowledge.

Declarations of interest: Emma Harding is a former service user representative on a clinical guideline development group, Catherine Pettinari was Centre Manager of the National Collaborating Centre for Mental Health while this study was conducted. Clare Taylor is senior editor at the National Collaborating Centre for Mental Health. The authors alone are responsible for the content and writing of the paper.

Notes

[1] The term service users is used throughout this document as it is a frequently preferred alternative term to patient in the UK healthcare system.

[2] See www.nice.org.uk