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. 2013 Fall;41(3):680-7.
doi: 10.1111/jlme.12078.

Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness

Susannah L Rose  1
Affiliations

Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness

Susannah L Rose. J Law Med Ethics. 2013 Fall.

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 organizations 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.

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Conflict of interest statement

Disclosure

Dr. Susannah Rose does not have financial ties with firms in the pharmaceutical, or medical device or food industries. Dr. Rose serves as a survey consultant for Community Catalyst, a non-profit organization focused on improving health care in the United States, as part of the Partnership to Advance Conflict-Free Medical Education (PACME). PACME is a partnership of Community Catalyst, Pew Charitable Trusts, the American Medical Student Association (AMSA) and the National Physician Alliance (NPA).

References

    1. I use the term Patient Advocacy Organizations (PAOs) for the organizaitons I discuss in this article. Other terms commonly used in the literature include: simply “advocacy groups,” “disease advocacy groups,” “health advocacy groups,” and “health consumer groups.” I distinguish PAOs from professional organizations, which typically focus on advancing their profession as a primary goal. In this article I focus on the advocacy and educational activities, as opposed to focusing upon the more individual clinical services that many of these organizations also provide.

    1. Markman M. The Increasingly Complex World of Cancer Patient Advocacy Organizations. Current Oncology Reports. 2008;10(1):1–2. - PubMed
    2. Dresser R. When Science Offers Salvation: Patient Advocacy and Research Ethics. Oxford: New York: Oxford University Press; 2001.
    3. Rothman SM. Health Advocacy Organizations and Evidence-Based Medicine. JAMA. 2011;305(24):2569–2570. at 24. - PubMed
    4. Rothman SM, Raveis VH, Friedman A, et al. Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices. American Journal of Public Health. 2011;101(4):602–609. - PMC - PubMed
    5. Armstrong EM, Carpenter DP, Hojnacki M. Whose Deaths Matter? Mortality, Advocacy, and Attention to Disease in the Mass Media. Journal of Health Politics, Policy & Law. 2006;31(4):729–772. - PubMed

    1. See Dresser supra note 2; Rothman et al. (2011), supra note 2; Armstrong, Carpenter, and Hojnacki, supra note 2 Herxheimer A. Relationships between the Pharmaceutical Industry and Patients’ Organisations. BMJ. 2003;326(7400):1208–1210. Buttle F, Boldrini J. Customer Relationship Management in the Pharmaceutical Industry: The Role of the Patient Advocacy Group. International Journal of Medical Marketing. 2001;1(3):203–214.

    1. Hans L. Pharmaceuticals and the Consumer Movement: The Ambivalences of ‘Patient Power,’. Australian Health Review. 2004;(28):228–237. at 2. - PubMed
    2. Tomes N. The Patient as a Policy Factor: A Historical Case Study of the Consumer/Survivor Movement In Mental Health. Health Affairs. 2006;25(3):720–729. at 3. - PubMed
    1. American Cancer Society. [last visited July 1, 2013]; available at < http://www.cancer.org/>.

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