Establishing patient partners’ roles on research teams: a scoping review

There are a myriad of ways patient partners can enact their roles on research teams. International guidelines emphasize the need for a collaborative approach to determining these roles to try to improve research impact and positive patient partner experience. The aims of this review were to: (1) describe how patient partners’ roles as co-researchers in health research are determined; and (2) identify factors that influence how these decisions are made. A scoping review was conducted. Four databases were searched plus citation searching occurred. Descriptions of English language studies of any design and commentaries of studies that report on patient partners’ or researchers’ reflections on their decision-making processes for engagement were included. Two reviewers completed screening and data extraction, with a third to resolve disagreements. Results were summarized and then content analysis was undertaken to synthesize the findings. Two patient partners contributed to the protocol development, screening, data interpretation, and manuscript writing at varying times during the process. A total of 45 papers (25 commentaries, 19 studies and 1 both a study and commentary) were included in this review. Most papers were from the United Kingdom (n = 15) and Canada (n = 12). Most patient partners had experiences related to chronic conditions rather than acute or time-limited illnesses. The synthesis yielded two categories. The first category, the research and research team attributes shape patient partner roles, encompassed patient partner, researcher and activity related factors that influenced patient partner engagement in activities. The second category, shared and ongoing decision-making, described the decision-making process to determine patient partner engagement, timing of these decisions, and tools to support these decisions. A dynamic, systematic and shared decision-making approach to determining patient partners’ roles in the research process has the potential to support meaningful engagement and maximize benefits. Because the research process may evolve over time and patient partners situations can change, there may be a need to renegotiate the patient partner’s role. Patient partners can undertake various roles in the research process. International guidelines recommend patient partners and researchers work together to decide how patient partners will be involved in the research and there are many activities patient partners can do to enact their role. This review describes how these decisions are made and what shapes them. We reviewed 45 English-language research studies and commentaries on the views of patient partners and researchers that described patient partners’ and researchers’ approaches to determining patient partners’ roles in the research process. Most of these studies were from the United Kingdom and Canada, with patient partners generally having chronic illness experience. We found that patient partner roles evolved throughout the study, with many factors affecting this process. Determining the patient partner role was dynamic, with reflection, discussion and negotiation occurring throughout the research process. The review suggests the need for both patient partners and researchers to together make decisions about their respective roles.

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