From the Journals

Two-thirds of patient advocacy groups receive industry funding

Publish date: January 17, 2017

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Representing patients, not sponsors

Industry funding strengthens and extends the much-needed patient voice in health care, but at what cost? During the EpiPen scandal, the manufacturer-sponsored advocacy groups were largely silent about price gouging. Recently, a drug company–funded “patient advocacy” campaign called “Even the Score” helped win regulatory approval for the thrice rejected controversial female sex drug flibanserin.

Just as the industry funding of clinical trials has been associated with more favorable findings, patient groups also face risks of bias when accepting money from companies seeking to expand markets for their new tests and treatments.

This new work demonstrates an urgent need for patient advocacy organizations to explicitly focus much more on representing the interests of patients and citizens, rather than serving – inadvertently or otherwise – the interests of their industry sponsors. In the meantime, we need much greater transparency about industry funding, including prominently displayed disclosures of dollar amounts and proportions of total funding on group websites, as well as addition of patient advocacy groups to the Open Payments program established by the Sunshine Act, which would mean mandatory disclosure of funding by sponsors.

Ray Moynihan, PhD, and Lisa Bero, PhD, are at the University of Sydney, New South Wales, Australia. Their comments are adapted from an editorial. They reported having no relevant financial disclosures. (JAMA Intern Med. 2017 Jan 17. doi: 10.1001/jamainternmed.2016.9179 ).

FROM JAMA INTERNAL MEDICINE

About two-thirds of patient advocacy organizations report receiving funds from for-profit firms, including pharmaceutical, device and biotechnology manufacturers, according to new survey results.

The study, published online Jan. 17 in JAMA Internal Medicine, sought responses from a randomly chosen sample of 439 executives at patient advocacy organizations (PAOs), of whom 66% (n = 289) responded. The median annual revenue for the groups surveyed was nearly $300,000, and 67% (n = 165) reported receiving at least some industry funding. Of those, 12% reported that more than half their annual funding comes from industry sources.

A total of 22 PAO leaders surveyed (8%) reported that they perceived pressure to conform their organizational interests to those of corporate donors (JAMA Intern Med. 2017 Jan 17. doi: 10.1001/jamainternmed.2016.8443).

The vast majority of respondents (82%) said they found conflicts of interest to be relevant to PAOs, and most reported having a written policy on conflicts. More than half said they viewed their own organizations’ conflict of interest policies as sound.

The findings warrant a broad re-examination of PAO conflict-of-interest policies and disclosures, and a detailed examination of the specific ways in which PAOs are influenced or pressured, wrote Susannah L. Rose, PhD, of the Cleveland Clinic, and her colleagues.

PAOs do not routinely and publicly disclose all their sources of funding on websites, tax returns, or annual reports, and there are media investigations into some groups “regarding their ties to industry and the integrity of their activities,” the investigators wrote.

Dr. Rose and her colleagues recommended that PAOs disclose detailed information about industry funding on their websites and on Open Payments, a government website. The researchers acknowledged that their study relied on self-reported data, and though it was designed to obscure the identity of respondents and their organizations, the possibility of response bias exists.

Harvard University’s Edmond J. Safra Center for Ethics funded the study. One coauthor, Steven Joffe, MD, MPH, disclosed past funding from Genzyme Sanofi. No other conflicts were reported.

Two-thirds of patient advocacy groups receive industry funding

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