Patient advocacy organizations — groups such as the American Cancer Society, the American Diabetes Association, the Arthritis Foundation — are non-profit organizations that seek to help patients with a specific disease or disorder by providing services to patients, sponsoring research, influencing government and insurance policy, and promoting and promulgating guidelines that are followed by doctors and patients to diagnose and treat disease. They are sometimes viewed as altruistic voices for powerless patients, providing a necessary counterweight to evil (or at least uncaring) government regulators and policymakers who are only interested in saving healthcare dollars at the expense of helpless sick people.
A study from this week’s JAMA Internal Medicine suggests the picture may not always be so clear. The study authors surveyed a random sample of leaders from 7800 or so patient advocacy organizations. 68% of them reported receiving funding from for-profit industry groups including pharmaceutical, medical device, and biotech companies. About 10% reported receiving more than half of their funding from industry sources, and 8% of respondents “perceived pressure to conform their positions to the interests of corporate donors.”
Patient advocacy organizations are “influential health care stakeholders.” They have accomplished many unarguably beneficial advances for patients. But part of their positive influence is due to the perception that they are not entangled in the financial conflicts of interest which have been so well-documented among physicians, physician specialty societies, and clinical guideline authors. And in my experience, this perception has sometimes led patients to insist on following the recommendations of an organization that knows little of their personal circumstances rather than following the recommendations of their personal physician. For the sake of transparency and good patient care, it is important to ensure that these organizations, which maintain that they speak for patients’ interests, are not beholden to the interests of companies whose aim is to benefit financially from those same patients.
(DISCLAIMER – It is sheer coincidence that a blog post about Conflicts of Interest is appearing on the same day as the Presidential inauguration.)