Abstract
BackgroundIncreasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER.MethodsA three-round Delphi survey was conducted with a panel of early-career researchers (ECRs) involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. The study was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges (including ethical issues). Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales.ResultsBetween April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds (general practitioners and postgraduate students). The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project.ConclusionIf PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise.
Highlights
Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative
To support them in this transition to becoming fully independent researchers conducting PER projects, we argue it is important that the research community understand how Early-career researcher (ECR) perceive: 1) the most compelling ethical issues they are likely to encounter; 2) their level of preparedness to deal with ethical challenges; and 3) what they need in order to engage patients responsibly in their projects
This paper presents the ethical aspects raised by participants in a broader Delphi survey whose primary aim was to examine how PER is being defined and circumscribed, identify its most pressing issues, and encourage the formulation of recommendations to support ECRs conducting PER
Summary
Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. There is a tendency to consider PER as an ethical imperative (i.e., that it should be conducted based on ethical grounds) [3, 5, 6]. This view is predicated on the principle that research must serve those on whom and for whom it is conducted. Shippee et al consider that PER can be justified on deontological grounds, since there is “a moral/ethical drive to empower lay participants in an otherwise expert-dominated endeavor and ensure civically responsible research”, and from a consequentialist standpoint, since PER can improve the effectiveness of research projects and resulting interventions [7]
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