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Original Investigation
January 30, 2019

Prevalence and Disclosure of Potential Conflicts of Interest in Dermatology Patient Advocacy Organizations

Author Affiliations
  • 1Department of Dermatology, Brigham & Women's Hospital, Harvard Medical School, Boston, Massachusetts
  • 2Tufts University School of Medicine, Boston, Massachusetts
JAMA Dermatol. 2019;155(4):460-464. doi:10.1001/jamadermatol.2018.5102
Key Points

Question  What is the current state of industry-related conflicts of interest and disclosure practices among patient advocacy organizations with dermatology?

Findings  In this study of 24 dermatology patient advocacy organizations with annual revenues that exceeded $500 000, though 71% of organizations in dermatology acknowledged receiving donations from industry sources, none reported the exact amount. A total of 13% of organizations reported a current or former industry executive on their governing board in annual reports or on public websites, whereas online searches identified a minimum of 54% with industry ties.

Meaning  The findings suggest that among patient advocacy organizations in dermatology, there are inconsistent disclosure practices regarding industry-derived financial support and board membership that may represent or give impressions of conflicts of interest.

Abstract

Importance  Patient advocacy organizations are nonprofit organizations that represent patients with medical conditions. Although these organizations may increase disease awareness and influence health care policy, reports have suggested financial relationships between organizations and drug, device, and biotechnology companies, which may lead to potential conflicts of interest. The extent of these conflicts has not been explored among patient advocacy organizations in dermatology.

Objective  To examine potential financial conflicts of interest and characterize disclosure practices among dermatology patient advocacy organizations.

Design, Setting, and Participants  This cross-sectional study of the largest dermatology patient advocacy organizations using the Kaiser Health News database acquired data on total revenue from each organization’s Form 990 for the year 2015. Tax forms and annual reports from 2017 were used for 2 organizations that were missing donor information for 2015. Annual reports, websites, and LinkedIn profiles were manually examined to ascertain donations and determine disclosure practices pertaining to financial support and board membership.

Main Outcomes and Measures  The amount and minimum proportion of donations attributable to industry sponsorship among organizations as well as the proportion of organizations disclosing (1) industry-sponsored financial support, (2) the amount of industry-derived donations, and (3) current and past relationships between governing board members and industry sponsors.

Results  This study identified 24 dermatology patient advocacy organizations with annual revenues that exceeded $500 000. Of these, 5 (21%) had total donations that exceeded $5 million and 4 (17%) reported industry donations that exceeded $500 000. Two organizations (8%) reported having at least 40% of total donations from industry sponsorship. Overall, 17 organizations (71%) reported receiving donations from industry on the annual report or the website and 12 (50%) reported the amount of donations in ranges. None of the organizations reported the exact amount or use of donations. On the basis of annual reports and websites, 3 organizations (13%) reported having a current or former industry executive on the organization’s governing board. When this search was replicated using LinkedIn, this figure was at least 54%.

Conclusions and Relevance  These findings suggest inconsistent disclosure of industry-derived financial support and board membership that may represent conflicts of interest. Policies that support the transparency and consistency of disclosure practices between industry and patient advocacy organizations appear to be needed to fully characterize the extent of conflicts of interest among patient advocacy organizations in dermatology and maintain trust in these important institutions.

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