Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review

BACKGROUND: The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research. METHODS: We conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress’ Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice. RESULTS: Twenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy – promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence – protection from financial burden, physical and emotional suffering; beneficence – putting things right for others, showing value-added, and supporting patient-partners; and, justice – achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits. CONCLUSIONS: When partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. SYSTEMATIC REVIEW REGISTRATION: The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).