Engaging with patients in research on knowledge translation/implementation science methods: a self study

Abstract

Plain English summary In this self-study we aimed to understand how members of research teams work together. We explored how research teams included patients and public members in studying research approaches (methods) that support the creation, sharing, and use of research results that matter to patients and the public (patient and public-oriented research). We analyzed interviews with 18 members of 4 teams and discussed the findings with each team. We then further refined the results and their interpretation with patients/public team members. We found that research teams had to deal with the uncertainty that is common for this type of research, which is often exploratory and focuses on processes. There needed to be a good match between patient/public members, the topic, and the team. Teams had to be flexible in how they worked together and they needed to address how power was shared within the team. Finally, the teams were affected by world events such as COVID and social unrest. Research team members had a chance to reflect and gain new understandings through the self-study. A key learning was that patients and public members bring their life experiences and world views to the project. They become researchers in their own right. When team members have a chance to reflect they can become more aware of their own and others’ talents, needs, and vulnerabilities, that awareness can help improve communication and teamwork. Patients and public members as co-researchers can bring new ways of understanding important features of knowledge translation and implementation science research approaches.

Keywords

• Knowledge translation
• Implementation science
• Methods research
• Patient and public research
• Patient author
• Patient-orientated research