Reported disclosures lacking among patient-advocacy groups

Researchers at the University of Pennsylvania’s Perelman School of Medicine found that many patient-advocacy organizations do not adequately disclose funding or other connections with drug of medical device makers, according to recent findings.

“What we’re seeing is that institutional conflicts of interest are the norm among larger patient-advocacy organizations, and that disclosures and management of these conflicts [are] limited,” Harald Schmidt, PhD, assistant professor of medical ethics and health policy at the University of Pennsylvania’s Perelman School of Medicine, said in the release.

Previous research has found that industry-funded patient-advocacy groups often take the industry’s side on policy issues, like when they fail to support drug-price reform measures and push insurers to cover expensive drugs with questionable benefits. McCoy and colleagues therefore examined websites and annual reports for 104 patient-advocacy groups based in the U.S. with annual revenues of $7.5 million or more to highlight the severity of these undisclosed conflicts of interests.

The results showed that only 1 of 104 groups clearly stated that they did not accept industry funding. Researchers found that over 82% of patient-advocacy organizations explicitly reported support and that many of the remaining groups providing no information about their donors, leaving open the possibility of industry support. Among the 59 groups that published donated amounts, 39% reported receiving at least $1 million annually. Along with financial support, the research revealed that 37 of the 104 reviewed groups reported having one or more board members that were also executives at pharmaceutical, biotech or medical device companies.

Despite the prevalence of these connections with industry, only 12 of the patient-advocacy groups had published policies addressing such institutional conflicts of interest. The authors suggest that the current laws, which mandate disclosures covering only industry payments to doctors and teaching hospitals, need to change.

“Our findings provide support for a new ’sunshine’ law to oblige drug, device and biotechnology companies to report the payments they make to patient organizations in the same way they must report payment to physicians and teaching hospitals,” Matthew S. McCoy, PhD, a postdoctoral fellow in the department of medical ethics and health policy at Penn Medicine, said in the press release. “Greater transparency would allow citizens, researchers, policy makers and others to assess conflicts of interest of patient-advocacy organizations in a way that is not currently possible, and would make it easier for patient-advocacy organizations that accept little or no industry support to differentiate themselves from those that are heavily dependent on such support.” – by Savannah Demko

Disclosure: The researchers report no relevant financial disclosures.