Background: Although including patients as full, active members of research teams is becoming more common, there are few accounts about how to do so successfully, and almost none of these are written by patient partners themselves. Three patient partners contributed their lived experience to a three-year, multi-component mental health research project in British Columbia, Canada. As patient partners, we contributed to innovative co-learning in this project, resulting in mutual respect and wide-ranging benefits. To guide future patient partners and researchers seeking patient engagement, we outline the processes that helped our research team 'get it right'.
Main body: From the outset, we were integrated into components of the project that we chose: thematically coding a rapid review, developing questions and engagement processes for focus groups, and shaping an economic model. Our level of engagement in each component was determined by us. Additionally, we catalyzed the use of surveys to evaluate our engagement and the perceptions of patient engagement from the wider team. At our request, we had a standing place on each monthly meeting agenda. Importantly, we broke new ground when we moved the team from using previously accepted psychiatric terminology that no longer fit the reality of patients' experiences. We worked diligently with the team to represent the reality that was appropriate for all parties. The approach taken in this project led to meaningful and successfully integrated patient experiences, fostered a shared understanding, which positively impacted team development and cohesion. The resulting 'lessons learned' included engaging early, often, and with respect; carving out and creating a safe place, free from stigma; building trust within the research team; drawing on lived experience; co-creating acceptable terminology; and cultivating inclusivity throughout the entire study.
Conclusion: We believe that lived experience can and should go hand-in-hand with research, to ensure study outcomes reflect the knowledge of patients themselves. We were willing to share the truth of our lived experience. We were treated as co-researchers. Successful engagement came from the 'lessons learned' that can be used by other teams who wish to engage patient partners in health research.
Keywords: Depression; Mental health; Patient empowerment; Patient engagement; Patient involvement.
Although including patients as members of research teams is becoming more common, there is little information about how to do this successfully. There are even fewer accounts written by patient partners themselves. We argue that successful patient engagement accepts and celebrates the patient partner experience. In this article, we reflect on and share our experiences as patient partners in a Canadian mental health research project. Early on in the project, we were asked to choose which streams of work we would like to work on. In addition, we helped develop surveys about patient engagement in the project. We also had time set aside at each meeting for patient updates. Importantly, we steered the team towards using different mental health terms because they had less stigma and better fit patients’ experiences. We offer the following ‘lessons learned’ about how to engage patients successfully in mental health research, but they are also likely to apply to most health research studies: (1) Engage Early, Often, and with Respect; (2) Carve out and Create a Safe Place; (3) Draw on Lived Experience; (4) Build Trust in the Research Team; (5) Listen, Learn, then Find a New Language; and (6) Cultivate Inclusion Throughout the Project. We believe that the lived experience of patients can and should go hand-in-hand with research. This helps to make sure that the research findings reflect the actual experiences and knowledge of patients. We hope that this article will be a useful guide to other patients and researchers.
© 2023. The Author(s).