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Private Funds for Patient Advocacy Orgs Raise Transparency Issues

Sixty-seven percent of non-profit patient advocacy organizations received for-profit funding, and 7 percent say donations can influence the group's bottom line.

Nearly two-thirds of non-profit patient advocacy organizations (PAOs) receive private-sector funding to support their initiatives, raising questions about transparency and conflicts of interest, asserts a new report from Cleveland Clinic published in the Journal of the American Medical Association.

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Patient advocacy organizations play a role in shaping the overall patient experience, advising patients and families managing chronic or terminal disease, creating patient education opportunities, shaping policy decisions, promoting disease awareness, and influencing research programs.

In order to carry out these activities, PAOs rely on donations, including from entities within the private sector, says a team of researchers led by Cleveland Clinic bioethicist Susannah Rose, PhD. However, very little is typically known about this funding, raising questions about conflicts of interest and the influence benefactors may have over the PAOs they support that may in turn affect the patient.

“Patient advocacy organizations need to secure financial support, which may come from many sources, including for-profit entities,” Rose and colleagues explained.

“However, relationships between PAOs and industry might influence PAOs’ activities in ways that might not align with the interests of the constituencies they represent. There is increasing evidence that financial relationships can create bias in medical research and physicians, and PAOs may be subject to the same concerns.”

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There are no formal methods for tracking donation information, thus making it more difficult to assess and mitigate potential conflicts of interest. According to the researchers, PAOs do not regularly or publicly disclose their benefactors and other sources of funding. Specifically, this information is missing from organization websites, annual financial reports, and 990 tax forms.

To better understand how many patient advocacy organizations receive private industry funding, and the extent to which that funding raises conflicts of interest, the research team issued a survey to 439 patient advocacy organization leaders, a representative sample of the over 7,000 organizations across the country. Ultimately, 289 organizations responded to the survey.

The results showed that most PAOs are modest in size, with median total revenue reaching $299,140 annually. Seventy-one percent of respondents had at least one full-time employee, and the median number of PAO members was eighteen. Ninety-nine percent of respondents were categorized as tax-exempt non-profit organizations.

Overall, two-thirds of responding PAOs reported receiving private industry funding, and 12 percent reported that they receive at least half of their funding from private industry benefactors. The median amount of private industry funding was $50,000, with benefactors most commonly specializing in pharmaceuticals, technology devices, and biotechnology.

Due to this funding, conflicts of interests regularly arise, with 82 percent of respondents saying these conflicts were “very or moderately relevant.” Mitigating these concerns, 55 percent of respondents said their conflict of interest policies are “very good.”

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Despite policy safeguards, 7.7 percent of respondents still admitted to feeling pressure to shape their patient advocacy organization’s mission to the will of private donors, a number that is too large, according to the researchers.

“That 8 percent of respondents reported pressure to conform their organizations’ positions to the interests of industry funders is of concern,” they noted. “How this pressure occurs and how to address it merits further study.”

According to Rose, an undisclosed private-sector donation of any amount is cause for concern due to potential influence from the donor. Considering the vulnerable patient populations PAOs interact with and advocate for (26 percent of respondents advocate for cancer patients, and 31 percent for patients with genetic disorders), this is especially concerning.

“Although the amounts are generally modest, increased transparency efforts and improved policies are needed to ensure that these influential groups are not conflicted in their missions to advocate for the needs of the people they represent – people who suffer from significant life-threatening and life-altering diseases,” Rose said in a press release.

“Furthermore, many of our survey respondents reported a need to improve their conflict-of-interest policies to help maintain public trust.”

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Maintaining public trust will require more than improvements to conflict of interest policies. According to the researchers, patient advocacy organizations need to become more transparent about their funding sources and make more public overtures on the matter.

“Greater transparency is a first step to helping PAOs maintain independence,” the researchers said. “To achieve this goal, PAOs should add detailed information about industry funding on their websites, and pharmaceutical, device, and biotechnology companies should be required to disclose payments to PAOs on the federal government’s Open Payments website.”

The researchers also offered suggestions to improve conflict of interest policies, such as creating a standard set of industry-wide requirements, or keeping PAO leaders in the dark about their benefactors and their business interests. In doing so, PAOs may avoid any influence, either explicit or implicit, about organization missions and patient-centered initiatives.

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