Early career researchers’ perspectives and roles in patient-oriented research

Abstract

Background Literature on patient-oriented research (POR) is growing rapidly. This field is increasingly encouraged by funders and structured by new research networks. POR involves moving away from considering patients as ‘subjects’, towards perceiving them as experts with experience-based knowledge. However, little is known about how early-career researchers (ECRs) perceive POR and their roles in developing it. This study examined how ECRs perceive POR, patients’ roles, the future of POR, and their own role in developing this approach. Methods A three-round Delphi study was conducted with Quebec’s Strategy for People and Patient-Oriented Research and Trials (SUPPORT) Unit awardees, composed of graduate students and clinicians, all ECRs. Of the 25 invited, 18 agreed to participate (72%), with a three-round retention rate of 89% (n = 16 on 18). Panelists answered open-ended questions, selected the most salient statements, and rated their (dis)agreement with proposals using a 7-point scale. Results Five main themes emerged: 1) ECRs’ knowledge of and experience with POR; 2) the POR definition; 3) patients’ roles and contributions; 4) the future of POR; and 5) ECRs’ roles in POR development. This study revealed that the ECRs were not so familiar with POR, even given their opportunities for networking within a scholarship program. Panelists agreed on the main components of a POR definition: Valuing, mobilizing, and legitimizing the experiential knowledge of patients living with a health condition; conducting research that focuses on patients’ concerns, participation, and outcomes; and integrating active partnership among a variety of actors. Panelists considered patients to be integral members of the research team (M = 5.31 ± 1.66), but were less convinced they should be considered co-researchers (M = 4.50 ± 1.75). Panelists saw themselves as playing many roles in developing POR, such as becoming well-informed about it and acting as knowledge brokers, motivators, doers, delegators, and activists. Conclusion The ECRs’ perspectives are informative on how the next generation of researchers envision POR, its future and how they might contribute to developing this approach. There is a clear need for a coherent and concerted strategy for POR capacity development, in which ECRs’ perspectives and their specific needs are taken into account.