Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism

Autor/inn/en	Bélisle-Pipon, Jean-Christophe; Couture, Vincent; Roy, Marie-Christine
Titel	Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism
Quelle	In: Research Ethics, 18 (2022) 2, S.126-131 (6 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Bélisle-Pipon, Jean-Christophe)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1747-0161
DOI	10.1177/17470161211059993
Schlagwörter	Patients; Participation; Research; Ethics; Compensation (Remuneration) + Suchen Sie Ihr Suchwort? Patient; Teilnahme; Forschung; Ethik; Abfindung; Kompensation; Lohnausgleich
Abstract	Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable--if not compulsory--activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board (IRB) to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation (i.e. honoraria). In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01