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

Research Involvement and Engagement, October 9. 2018
Geneviève Rouleau, Jean-Christophe Bélisle-Pipon (Visiting Researcher), et al.

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Complete author list: 

Geneviève Rouleau, Jean-Christophe Bélisle-Pipon, Stanislav Birko, Philippe Karazivan, Nicolas Fernandez, Karine Bilodeau, Yi-Sheng Chao, Alexandra de Pokomandy, Véronique Foley, Bruno Gagnon, Samantha Gontijo Guerra, Cynthia Khanji, Catherine Lamoureux-Lamarche, Bertrand Lebouché, Carlotta Lunghi, Matthew Menear, Bruno D. Riverin and Claudie Rodrigue.

From the summary: 

Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients’ experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs’ own role in developing POR. Using a technique designed to collect expert opinions and find consensus—the Delphi method—a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the on-going development of POR so that it becomes more widely adopted.

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bioethics human subjects research jean-christophe belisle pipon research