Stakeholder involvement: how to do it right: article 9 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.

INTRODUCTION: Professional societies, like many other organizations around the world, have recognized the need to use more rigorous processes to ensure that healthcare recommendations are informed by the best available research evidence with input from appropriate stakeholders. This is the ninth of a series of 14 articles that were prepared by an international panel to advise guideline developers in respiratory and other diseases on approaches for guideline development. We updated a review of the literature on stakeholder involvement, focusing on six key questions. METHODS: In this review we addressed the following questions. (1) What are "stakeholders"? (2) Why involve stakeholders in guidelines? (3) At what stage should stakeholders contribute to guidelines? (4) What are the potential barriers to integrating stakeholder involvement? (5) How can stakeholders be involved effectively? (6) Should anyone be excluded from the process? We searched PubMed and other databases of methodological studies for existing systematic reviews and relevant methodological research. We did not conduct our own systematic reviews. Our conclusions are based on available evidence, the experience of guideline developers, and workshop discussions. RESULTS AND DISCUSSION: Stakeholders are all those who have a legitimate interest in a guideline. They include healthcare professionals, patients and caregivers, public and private funding bodies, managers, employers, and manufacturers. Their engagement is justified for several reasons, including limitations of evidence, principles of transparency and democracy, ownership, and potential policy implications. They have a role to play at different points of guideline development, but their involvement can be complex. To be successful, stakeholder engagement needs to be inclusive, equitable, and adequately resourced.