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

Abstract

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 ongoing development of POR so that it becomes more widely adopted.

Patients as Research Partners; How to Value their Perceptions, Contribution and Labor?

“…While this may be highly desirable, it may not be affordable for many research initiatives. Bélisle-Pipon, Rouleau, and Birko (2018) indicate that financial compensation may be more difficult to grant in certain types of projects, particularly those conducted by early career researchers with access to smaller grants than those available to large research teams. In such cases, recognition of patient involvement may take different forms that are personal, involve knowledge sharing, and, when relevant, may be academic.…”

“…Failure to acknowledge the contribution of PPRs to this goal could be unfair. It has been suggested that in certain circumstances, the contribution of patients in PER warrant recognition through authorship on publications (Bélisle-Pipon, Rouleau, and Birko 2018). Participants in this study explored the ethical ramifications (or implications) of engaging patients in research; they agreed that authorship might foster fair recognition of both patients and researchers in PER.…”

“…Currently, Patient Engagement in Research (PER) initiatives actively promote the inclusion of patients in health research beyond their traditional role as research participants. PER is broadly defined as the: 1) valuation, mobilization, and legitimization of patient experiential knowledge of living with a particular health condition; 2) conduct of research that focuses on patients' concerns, participation, and outcomes; and 3) active partnership among a variety of actors (researchers, clinicians, decisionmakers, institutions, patients, families) (Rouleau et al 2018). Some PER initiatives even have "patient partners in research" (PPRs) who participate as collaborators with the researchers (or even co-researchers); the idea behind this collaboration is to recognize patient knowledge to be as important as scholarly knowledge within health research.…”

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol

“…We propose to use a PAR approach [84] and a phenomenological case study [85] to explore participants' experiences of involvement. In this study, drawing on work by Rouleau et al [86], and Nelson et al [87], PAR is defined as the: (i) valuation, mobilization and legitimization of service user experiential knowledge of living with a particular health condition(e.g., mental illness); (ii) conduct of research that focuses on service users' concerns, participation, and outcomes; and (iii) active partnership among a variety of stakeholders/actors(e.g., researchers, health professionals, decision makers, organizations, service-users) [86], for the purpose of taking action and making change [87]. PAR is the approach of choice for the proposed study for several reasons.…”

“What Is PER?” Patient Engagement in Research as a Hit

“…PER, as a (new) research approach [5], seeks to intermingle patients and researchers, particularly by valuing patients as partners, and their experiential knowledge as complementary to scholarly knowledge. The choir of patients stress that they want to contribute to research and share their perspective that forms a "communal body of knowledge exceed[ing] the boundaries of individual experiences" [6].…”