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January 17, 2017/News Releases

Cleveland Clinic Survey Finds Two-Thirds of Patient Advocacy Groups Receive Industry Funding

Results raise questions about potential conflicts of interest; Increased transparency, more robust policies needed to ensure public trust

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Patient advocacy groups – non-profit organizations that provide counseling and education to patients and advocate for policy changes – frequently receive funding from for-profit industry, raising questions about independence and conflicts of interest, according to new Cleveland Clinic research.

In a national survey of 439 patient advocacy groups, a team of researchers led by Cleveland Clinic bioethicist Susannah Rose, Ph.D., found that 67 percent receive funding from for-profit companies, with 12 percent receiving over half of their funding from industry. The research is published in the Jan. 17 issue of the Journal of the American Medical Association (JAMA) Internal Medicine.

Susannah Rose, Ph.D.

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

Patient advocacy groups have wide-ranging influence, including counseling and educating patients and their loved ones, engaging in policy advocacy, promote disease awareness, and shaping research agendas.

The survey asked patients groups about the nature of their activities, their financial relationships with industry, and the perceived effectiveness of their conflict-of-interest policies. Sixty-six percent (289) of the patient groups replied, varying widely in terms of size, funding, activities and disease focus.

More than two-thirds of these groups reported receiving industry funding. The groups’ median revenue was $299,000, with a median of $50,000 received from industry. Almost 9 percent of the groups received $1 million or more from industry. Among those patient advocacy groups that acknowledged receiving industry support, the pharmaceutical, medical device and biotechnology sector accounted for a median of 45 percent of industry funding.

In addition, 82 percent of respondents indicated that conflicts of interest are “very” or “moderately” relevant to patient advocacy groups, and 55 percent believed their organizations’ COI policies are “very good.” Still, 8 percent of patient advocacy group leaders perceived pressure to conform their positions to the interests of corporate donors.

Research contributors included: Cleveland Clinic’s Department of Bioethics, Office of Patient Experience, and Department of Quantitative Health Sciences; the University of Pennsylvania’s Perelman School of Medicine; and the University of Chicago’s Harris School of Public Policy.

About Cleveland Clinic

Cleveland Clinic is a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education. Located in Cleveland, Ohio, it was founded in 1921 by four renowned physicians with a vision of providing outstanding patient care based upon the principles of cooperation, compassion and innovation. Cleveland Clinic has pioneered many medical breakthroughs, including coronary artery bypass surgery and the first face transplant in the United States. Cleveland Clinic is consistently recognized in the U.S. and throughout the world for its expertise and care. Among Cleveland Clinic’s 81,000 employees worldwide are more than 5,743 salaried physicians and researchers, and 20,160 registered nurses and advanced practice providers, representing 140 medical specialties and subspecialties. Cleveland Clinic is a 6,690-bed health system that includes a 173-acre main campus near downtown Cleveland, 23 hospitals, 276 outpatient facilities, including locations in northeast Ohio; Florida; Las Vegas, Nevada; Toronto, Canada; Abu Dhabi, UAE; and London, England. In 2023, there were 13.7 million outpatient encounters, 323,000 hospital admissions and observations, and 301,000 surgeries and procedures throughout Cleveland Clinic’s health system. Patients came for treatment from every state and 132 countries. Visit us at clevelandclinic.org. Follow us at twitter.com/CleClinicNews. News and resources available at newsroom.clevelandclinic.org.

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