Learning to work together: experiences of researchers and family partners in a patient-oriented research team

The BetterLTC research team holds ten years of experience conducting patient-oriented research. We are an intergenerational multicultural patient-oriented research team. Our team comprises researchers, clinicians, trainees, and family partners (experts by lived experience).

In this commentary, we come together to share our experiences as researchers and family partners: what we think about and how we live patient-oriented research. We recorded and explored our experiences from the ground up. We came together to thematically analyze our recordings, and we encountered themes within our conversations. From our shared experiences, we make visible the common themes of balancing diverse expectations, raising the voice of diverse experiences, and valuing relationship building. As a team, we have encountered challenges within the academic culture of high productivity expectations. We navigate challenges by acknowledging the diverse expectations within the team and valuing each person`s perspectives and our time together for relationship building.

We learned that patient-oriented research is more than following policies and guidelines for engaging family partners; it is a way of being in the world that cultivates curiosity and openness to surprise.