Patient advocacy groups have close ties with industry, but some lack transparency

Patient advocacy organizations carry out important work like funding research and lobbying on behalf of people with a certain health condition — but they also can be less than fully transparent, with some failing to publicly list their sources of funding, a new study finds.

Why it matters:

While drug and device companies are required by federal law to disclose all payments they make to doctors and teaching hospitals, they don’t need to tell anyone how much money they give to patient advocacy groups. These patient advocacy groups could be small, homegrown outfits — like local chapters of the Autism Society of America, or charities started to honor individuals who died from cancer — or behemoths with budgets in the tens of millions such as the American Diabetes Association and the American Lung Association.

Sometimes, the fact that an advocacy group is industry-funded can put it in a difficult place. For example, it might feel pressure not to question rising drug prices that are hurting patients, as the New York Times found in the fall. Or it could promote policies that favor the drug or device sold by its donors, even if that’s not in the best interest of the patients.

The nitty-gritty:

Matthew McCoy, a postdoctoral fellow at the University of Pennsylvania’s Perelman School of Medicine, and coauthors looked at the websites and annual reports of all US-based patient advocacy organizations with annual revenues of at least $7.5 million. They found that the vast majority — 83 percent — report receiving funding from industry.

But notably, of the 104 organizations they looked at, 13 didn’t name their donors either on their website or in their annual report. And only a handful list the exact contribution amounts.

Lisa Bero, a professor at the University of Sydney who studies conflicts of interest in medicine, said that this is a problem: “We ought to know where patient organizations are getting their funding from, because patient organizations often take advocacy positions.”

The study was published Wednesday in the New England Journal of Medicine.

But keep in mind:

Policies for patient advocacy groups are changing. Marc Boutin, chief executive officer of the National Health Council, a coalition of health advocacy groups, said that its members will soon be required to disclose more information about the money they receive from companies. In order to remain members, they will have to either publish the exact amount of money they receive from each company, or the percentage of their funding that comes from medical companies. He said he expects most organizations to do both.

What they’re saying:

Only one of the organizations analyzed, the Child Mind Institute, explicitly states that it does not accept industry funding. “We want to ensure that there is no appearance of any conflict between our clinicians’ independent clinical judgement and the organization’s sources of funding,” executive director Elizabeth Planet told STAT.

Susannah Rose, a Cleveland Clinic researcher who has also studied financial contributions to patient groups, was heartened to see McCoy’s paper. But she cautioned that, while it is good for patient advocacy groups to be as transparent as possible, all of the responsibility shouldn’t be on them. Indeed, it is companies who are required to report payments to physicians, and not the other way around.

The bottom line:

This study adds to the small but growing body of evidence about the ties between patient advocacy organizations and companies, which many say deserves more attention.