Throughout all fields of medicine, patient advocacy organizations serve a number of valuable functions, including funding research, guiding treatment protocols, influencing legislation, and educating patients.

To accomplish these tasks, patient advocacy organizations can raise funds through several different revenue streams. Recently, researchers closely examined one of these sources — industry funding — in a study published in JAMA Internal Medicine.1

For the study, Susannah L. Rose, PhD, from the Cleveland Clinic in Ohio, and fellow researchers surveyed a random sample of 439 patient advocacy organization leaders from the 7865 identified patient advocacy organizations in the United States. The results showed that 67.3% of patient advocacy organizations received industry funding, while 11.9% received more than half of their funding from industry.1

Dr Rose spoke with Endocrinology Advisor about these and other findings, sharing her thoughts on the role of industry in patient advocacy organizations and how clinicians should interpret the results.

Endocrinology Advisor: What was the impetus for examining conflicts of interest in the funding of patient advocacy organizations?

Dr Rose: About 15 years ago, I was a clinician and psychotherapist working with cancer patients at Memorial Sloan Kettering Cancer Center. I referred many patients to advocacy groups focused on oncology, and I got a lot of information from them, as did many of my physician colleagues. Later, I started conducting research into conflicts of interest among physicians and in research. I became interested in this topic because there weren’t much data available on patient advocacy organizations and their partnerships with industry. And when I tried to find information from websites or archival research, it wasn’t readily available.

Endocrinology Advisor: Currently, are there any policies in place to limit conflicts of interest within patient advocacy organizations or does each organization essentially self-govern?

Dr Rose: To my knowledge, there are no restrictions to patient advocacy organizations in terms of their industry relationships. A lot of them are nonprofit, so there are some restrictions in terms of where they can obtain money; and, of course, they have to report their income to the Internal Revenue Service. However, a lot of that information isn’t transparent on their tax returns. In addition, each organization can make its own rules and often does, as our study found.

Endocrinology Advisor: What were the chief findings of the study and how did they compare with your initial expectations?

Dr Rose: We were surprised that more than two-thirds of advocacy groups received industry funding. I’m not sure what led to the surprise, exactly, other than the lack of data on this topic leaning one way or the other. Going into it, we thought only the largest advocacy groups received money. However, we found that organizations of all sizes receive funding from industry.

Another important finding was that most of the money patient advocacy organizations received was modest. The median annual revenue for patient advocacy organizations was $299,140, of which the median amount of funding from industry was $50,000. Furthermore, approximately 34% received a quarter of their funding from industry and roughly 12% received more than half of their funding from industry.

Endocrinology Advisor: For patient advocacy organizations receiving more than half of their funding from industry, how do you believe that level of financial support can have an impact on their mission?

Dr Rose: The role of bias is an interesting area of research that our study did not address. Theoretically, when advocacy groups are more reliant on a single stream of revenue, there is concern that they may become dependent on that source, which could result in an increased risk for bias.

Endocrinology Advisor: In fact, more than 7% of respondents said they perceived pressure to conform their positions to those of the donors. Is it possible this number represents just a small piece of a larger whole?

Dr Rose: I believe so. Industry provides financial support in many ways, and we wanted to find out whether advocacy groups feel pressure when they receive money. We were surprised that 7.7% said they did. Although some would say this is not much, to me it is a significant number. If you extrapolate that 7.7% over the entire population of nearly 8000 organizations, more than 600 organizations feel pressure. 

Endocrinology Advisor: How generalizable are the results of this survey?

Dr Rose: Generalizability with surveys is closely tied to response rates. One thing that surprised us was our excellent response rate of 65.8%. Granted, nearly 35% did not respond, possibly because they didn’t want to tell us about their relationships; then again, the people who didn’t have relationships or had very few relationships may not have responded because they thought the survey was irrelevant. Nevertheless, the high response rate is reassurance that our study is generalizable.

Endocrinology Advisor: Since patient advocacy organizations have an enormous influence on healthcare and legislation, should healthcare practitioners be alarmed by these findings? How do you recommend they interpret the results?

Dr Rose: I would interpret the results with caution at this point. I’m a clinician as well, and if I were going to rely on information from an advocacy organization, I would do the same thing I do when reading research: find out how it’s funded. If the study is funded by industry, I would still accept the information, but with a grain of salt. For patient advocacy organizations, I would use a parallel process. About 25% of advocacy groups disclose, and for those that don’t, I would call or email the organizations to find out their industry funding sources before I would put much reliance on their information.

Endocrinology Advisor: Is a separation of patient advocacy organizations from industry funding necessary here?

Dr Rose: While some consider separating industry funding from advocacy groups an option, I am hesitant to call that the solution to this very complex matter. We don’t have enough information yet, and many of these organizations only receive small amounts of industry funding. Although it is appropriate to be concerned about the possibility of an increased risk for bias among industry-funded groups, we can’t underestimate the benefit these organizations bring to many people, including those with rare diseases. In fact, we found that patient advocacy organizations frequently focus on rare diseases. And many times, people with those diseases wouldn’t have a voice without advocacy groups.

Endocrinology Advisor: What changes are required to help patient advocacy organizations maintain their independence?

Dr Rose: I see 2 primary changes helping this situation. First, there needs to be greater transparency. The reason we had to perform this very time-consuming survey is that we could not obtain the information from a government website, the Internal Revenue Service, or the advocacy groups themselves. Our study is one of the steps needed to increase transparency, but it would be great to have a more in-depth analysis on how these organizations are funded and how they are using the money.

Second, the advocacy groups we surveyed strongly believed this issue was important, which was likely one of the reasons we had such a high response rate. Added to which, the groups didn’t believe their conflicts of interest policies were adequate, with only 25% actually disclosing. So, improving disclosure policies is another step forward as well.

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  1. Rose SL, Highland J, Karafa MT, Joffe S. Patient advocacy organizations, industry funding, and conflicts of interest [published online January 17, 2017]. JAMA Intern Med. doi: 10.1001/jamainternmed.2016.8443

This article originally appeared on Endocrinology Advisor