Concerns about the real independence of patient advocacy organizations

Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest

Key Points

What is the nature of industry funding of patient advocacy organizations in the United States?

This survey study found that 67% of a national sample of patient advocacy organizations, virtually all of which were not for profit, reported receiving funding from for-profit companies. Twelve percent received more than half of their funding from industry; a median proportion of 45% of industry funding was derived from the pharmaceutical, device, and/or biotechnology sectors.

Most advocacy organizations receive money from industry; therefore, increased transparency and robust conflict of interest policies and practices are needed to help these non-profit organizations maintain their independence.

2017 Study Abstract

Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest, The Jama Network, doi:10.1001/jamainternmed.2016.8443, January 17, 2017.

Image credit eyeforpharma.

Patient advocacy organizations (PAOs) are influential health care stakeholders that provide direct counseling and education for patients, engage in policy advocacy, and shape research agendas. Many PAOs report having financial relationships with for-profit industry, yet little is known about the nature of these relationships.

To describe the nature of industry funding and partnerships between PAOs and for-profit companies in the United States.

Design, Setting, and Participants
A survey was conducted from September 1, 2013, to June 30, 2014, of a nationally representative random sample of 439 PAO leaders, representing 5.6% of 7865 PAOs identified in the United States. Survey questions addressed the nature of their activities, their financial relationships with industry, and the perceived effectiveness of their conflict of interest policies.

Main Outcomes and Measures
Amount and sources of revenue as well as organizational experiences with and policies regarding financial conflict of interest.

Of the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. The PAOs varied widely in terms of size, funding, activities, and disease focus. The median total revenue among responding organizations was $299 140 (interquartile range, $70 000-$1 200 000). A total of 165 of 245 PAOs (67.3%) reported receiving industry funding, with 19 of 160 PAOs (11.9%) receiving more than half of their funding from industry. Among the subset of PAOs that received industry funding, the median amount was $50 000 (interquartile range, $15 000-$200 000); the median proportion of industry support derived from the pharmaceutical, device, and/or biotechnology sectors was 45% (interquartile range, 0%-100%). A total of 220 of 269 respondents (81.8%) indicated that conflicts of interest are very or moderately relevant to PAOs, and 94 of 171 (55.0%) believed that their organizations’ conflict of interest policies were very good. A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors.

Conclusions and Relevance
Patient advocacy organizations engage in wide-ranging health activities. Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Many respondents report a need to improve their conflict of interest policies to help maintain public trust.

Author: DES Daughter

Activist, blogger and social media addict committed to shedding light on a global health scandal and dedicated to raise DES awareness.

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