Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs

• Published in: Science & public policy 2022-10, Vol.49 (5), p.751-764
• Main Authors: Harmsen, Simone, Pittens, Carina A C M, Vroonland, Eva, van Rensen, Annemiek J M L, Broerse, Jacqueline E W
• Format: Article
• Language: English
• ISSN: 0302-3427; 1471-5430
• DOI: 10.1093/scipol/scac024

Involving patients in health research requires a new way of working for all stakeholders involved, including researchers. This research aimed (1) to gain deeper insight into the experiences and needs of researchers regarding meaningful patient involvement and (2) to incorporate these insights into an online tool. This was done in a transdisciplinary research process, including three focus group discussions and three test sessions. We used the Social Cognitive Theory in the analysis process to reflect on how the tool addresses the complex personal, behavioural, and environmental factors that shape researchers’ experiences and needs. Identified factors were categorized into three themes: added value, perceived difficulty and patient-researcher role patterns. A tool was developed that addresses these factors, aiming to stimulate meaningful involvement by encouraging (self)reflection, experimentation, and learning-by-doing. It provides one element in a bigger systems approach to further stimulate patient involvement.