Understanding task decision-making for patient partner engagement in health research projects: a qualitative study

Internationally, patient and public engagement is increasingly expected in health research. There is an emphasis on active partnership across the research lifecycle, where patient partners are equal team members; however, this level of partnership remains difficult to operationalise in practice. A key barrier is task decision-making, defined as how patient partners and researchers decide who undertakes specific research activities. This study aims to understand patient partner and researcher perceptions of task decision-making, including the factors that influence this process. In this descriptive qualitative study, 19 patient partners and researchers across Australia and Canada were interviewed. Interview transcripts were analysed using a framework analysis approach by a patient partner (KM [Canada]) and an academic researcher (GT [Australia]) on the research team. The overarching theme labelled “It’s an ongoing conversation”, captured how task decision-making was experienced as a reoccurring, informal dialogue evolving over time. The categories that described this process were: (1) “Setting the tone for task decision-making conversations,” which highlighted how mindsets, confidence, and early suitability assessments shaped subsequent task decision-making; and (2) “Maintaining alignment through ongoing negotiation” which reflected how task decisions were negotiated and adapted over time to align with patient partners’ factors (i.e. interests and skills) and researchers’ constraints. This study demonstrates that task decision-making in patient and public engagement research is an ongoing, relational process, rather than a discrete or formalised activity. Meaningful engagement in this process depends on assessing and maintaining fit between patient partners and tasks, supported by researcher values that prioritise collaboration and transparency during decision-making. When these processes are absent, patient engagement in decision-making, and subsequent engagement in project tasks, risk becoming tokenistic, which can result in poor experiences for patient partners. Usually, a patient is a participant in a study; now, patients are being asked to partner with the researcher and become part of the team. They are often known as patient partners. In this new role, patient partners can do many tasks like helping design the study to focus on what is important to patients, understand what the findings are and share these findings with others. However, researchers do not fully understand how and where to include patient partners across the research study. We interviewed 19 patient partners and researchers from Australia and Canada, and we asked how decisions are made about what tasks patient partners participate in. The data from these interviews were analysed by a patient partner and academic researcher. We found that allocating tasks to patient partners was an ongoing conversation and negotiation, and not a formal process. Starting these conversations early helped establish expectations and build working partnerships between patient partners and researchers. Patient partner confidence and researchers’ value for patient partner engagement shaped these conversations. We also found that these ongoing conversations helped match the patient partner to appropriate tasks that also met the needs of the research team.