A recent study published in JAMA Dermatology was conducted to examine potential financial conflicts of interest and characterize disclosure practices among dermatology patient advocacy organizations.
For this cross-sectional study of the largest dermatology patient advocacy organizations, researchers used the Kaiser Health News database to acquire 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. The reserachers also manually examined annual reports, websites, and LinkedIn profiles to track donations and determine disclosure practices pertaining to financial support and board membership.
They identified 24 dermatology patient advocacy organizations with annual revenues greater than $500 000. Five of these had total donations that exceeded $5 million and four reported industry donations that exceeded $500 000. Two groups reported that at least 40 percent of their total donations were from industry sponsorship. Overall, 17 organizations reported receiving donations from industry on an annual report or organization website and 12 organizations reported the amount of donations in ranges. Three organizations reported having a current or former industry executive on its governing board on its website or annual report. When this search was replicated using LinkedIn, the reserachers found at least 54% of the organizations have a current or former industry executive on their boards.
The study authors concluded, "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."