Co-learning commentary: a patient partner perspective in mental health care research

Abstract

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.

Key ingredients for successful collaboration in health research: perspectives of patient research partners

“…According to Riches et al [ 9 ], including people with lived experience on project teams is foundational and important throughout the research cycle. But often, as PRPs on research teams, we are left feeling that our expertise as people with lived experience, and our other skills and professional expertise that we bring to the team is undervalued.…”

Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research

“…Patient partners and researchers have reported on the benefits of co-learning in research projects that include patients and caregivers as members of the research team [ 22 ]. These benefits include opportunities to develop empathy, trust, and mutual respect by learning about one another’s experiences and viewpoints, developing communication skills (e.g., decreased use of jargon or stigmatizing language, pre-circulation of meeting materials), and creation of “creativity, inclusivity, and cooperative ethos within our team, with plenty of space for kindness and laughter along the way” [ 22 , (p4)]. These benefits of co-learning have also been observed in training available to community partners and researchers to prepare for participatory research project [ 23 ].…”