67% of patient advocacy groups receive funding from for-profit companies

Approximately 67 percent of nonprofit organizations dedicated to educating patients and advocating for policy changes on their behalf receive funding from for-profit companies, according to a survey published in JAMA.

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Researchers from Cleveland Clinic sent out 439 surveys to patient advocacy leaders from Sept. 1, 2013 to June 30, 2014. More than half of the surveys (289) were returned with more than 80 percent of the questions answered from. Among them, 67.3 percent reported receiving funding from for-profit companies. Nearly 12 percent reported receiving more than half their funds from for-profit industry and more than 7 percent said they perceived pressure to conform to the interests of corporate donors. Pharmaceutical, device and biotechnology sectors accounted for 45 percent of the industry support reported.

“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,” said Cleveland Clinic bioethicist Susannah Rose, PhD, the study’s lead author. “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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