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.