6 hours ago Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. ... 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 ... >> Go To The Portal
Reports by media and watchdog groups have drawn critical attention to financial relationships between patient-advocacy organizations and drug, device, and biotechnology companies.6-11Indus- try support can be an important resource for patient-advocacy organizations but can also give rise to institutional conflicts of interest,2,12which exist when “an institution’s own financial inter- ests or the interests of its senior officials pose risks to the integrity of the institution’s primary interests and missions.”13In the context of orga- nization–industry relations, concerns have been raised that industry-supported patient-advocacy organizations have spoken out for access to drugs with questionable therapeutic benefit and remained silent on policy proposals, such as drug-pricing reforms, that might benefit their constituents.6,7
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To focus on organizations likely to have a major effect in terms of outreach and advocacy, we used a purposive sampling strategy that was designed to capture the largest patient-advocacy organizations, on the basis of annual revenue, that were operating at the national level in the United States.
From January through June 2016, we reviewed the Form 990 tax records, annual reports, and websites of each organization included in the study. Data collection followed a standardized process for each organization.
Descriptive statistics and frequencies were calculated with the use of Microsoft Excel. When patient-advocacy organizations reported the amounts of individual donations that they received, we summed donations from drug, device, and biotechnology companies to calculate the total revenue that each organization received from industry donations.
Overall, 86 of the 104 patient-advocacy organizations (83%) reported receiving financial support from industry. Of the 18 organizations that did not report receiving industry support, 13 provided no donor information. Only 1 of the 104 organizations explicitly indicated that it does not accept industry support.
Of the 104 patient-advocacy organizations, 37 (36%) reported at least one current drug, device, or biotechnology company executive on the governing board. In addition, 4 organizations reported at least one former industry executive on the board.
Of the 104 patient-advocacy organizations, 27 published any policy pertaining to conflicts of interest on the website of the organization.
This study shows that among 104 of the largest U.S.-based patient-advocacy organizations, at least 83% received financial support from drug, device, and biotechnology companies, and at least 39% have a current or former industry executive on the governing board. Our results raise four points worth highlighting.
6.1 (for faculty, students, residents, and fellows). Independent assessment of the evidence and the practice of evidence-based medicine are core competencies for physicians in clinical practice as well as academic practice; relationships with industry should not undermine those competencies.
9.1 Proposes that groups such as accrediting organizations, public and private health insurers, and associations of medical journal editors develop incentives to make institutions more accountable for preventing, identifying, and managing conflicts of interest.
4.1 Calls for a general rule that researchers may not conduct research involving human participants if they have a financial interest in the outcome of the research, for example, if they hold a patent on an intervention being tested in a clinical trial. Exceptions should be allowed only if an individual’s participation is judged to be essential for the safe and appropriate conduct of the research.