Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust, and Trustworthiness

8 Pages Posted: 20 Jul 2013 Last revised: 7 Sep 2013

Susannah L. Rose

Cleveland Clinic, Department of Bioethics; Case Western Reserve University; Edmond J. Safra Center for Ethics at Harvard University

Date Written: July 18, 2013

Abstract

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that bias may occur, even among well-meaning professionals, when people and organization have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, "Conflicts of Interest in Medical Research, Education, and Practice," and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust.

Keywords: Patient Advocacy, Disease Advocacy, Institutional Conflicts of Interest, Trust, Trustworthiness

JEL Classification: L31

Suggested Citation

Rose, Susannah L., Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust, and Trustworthiness (July 18, 2013). Journal of Law, Medicine and Ethics, Forthcoming. Available at SSRN: https://ssrn.com/abstract=2295485

Susannah L. Rose (Contact Author)

Cleveland Clinic, Department of Bioethics ( email )

9500 Euclid Ave.
Cleveland, OH 44195
United States

Case Western Reserve University ( email )

2511 Overlook Road
Cleveland Heights, OH 44106
United States

Edmond J. Safra Center for Ethics at Harvard University ( email )

124 Mount Auburn Street
Suite 520N
Cambridge, MA 02138
United States

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