Dialogue and deliberation: New approaches to including patients in setting health and healthcare research agendas

• Published in: Action research (London, England) Vol. 17; no. 4; pp. 429 - 450
• Main Author: Abma, Tineke A
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.12.2019; Sage Publications Ltd
• Subjects: Chronic illnesses; Health problems; Health research; Health services; Medical research; Medicine; Participation; Patients; Power structure; relational empowerment; agenda and priority setting; Health research; patient involvement; coownership; dialogue
• ISSN: 1476-7503; 1741-2617
• DOI: 10.1177/1476750318757850

Collective participation of patients in health and medical research is an emerging trend. The literature falls, however, short on process descriptions focusing on the power dynamics when sharing power with patients in the research process. This article therefore aims to generate knowledge on how to involve patients and redress power imbalances in health research agenda setting. The context for the study was health research agenda setting on Parkinson’s Disease in The Netherlands. The dialogue model was used: a multistakeholder and multiphased process for the coproduction of research agenda. Patients with Parkinson were involved in all stages of the agenda setting. It appeared to be crucial for people with Parkinson to create a free, protective, and communicative space of mutual encouragement to develop power from within and to articulate their voice. This prepared them for meaningful deliberations with health-care professionals, researchers, and funding agencies. Ultimately, these deliberations resulted in a relevant and useful research agenda that better enable health-care services to meet the needs and expectations of patients.