Stroke survivors partner in research: a case example of collaborative processes

Abstract

Plain Language summary Whenever possible, including patients as partners in the research process can improve the quality of the research and the relevance of the results. Sometimes, there can be challenges when engaging people with lived experience in health research. For example, after a stroke, some patients can have trouble moving, thinking, or speaking. The purpose of this paper is to describe the processes used by our research team, comprised of two researchers and three patient partners with lived experience who had knowledge and insights into surviving a moderate to severe stroke. The research was a graduate student project exploring what patients think of physical therapy tests and measures used post-stroke. This article describes the process, rather than the outcomes of that research. We collaborated through virtual meetings, which were held every time decisions about the research had to be made or where feedback was required. The patient partners improved the interview question guide, helped to analyze the data, and helped to communicate the research findings. We found several strategies that helped us to be successful, including focusing on the value of the patient perspective and insights, taking time to build relationships, and allowing time to share stories. We also took special care to follow recommendations about communication to make sure that all the patient partners understood the project aim and activities that we were working on together. We feel this paper shows how patients who have had a stroke can collaborate as valued members of health research teams.

Keywords

• Patient partner
• Patient-oriented research
• Stroke
• CVA
• Rehabilitation