Susannah Rose — Patient Advocacy Organizations and Institutional Conflicts of Interest

The December 15, 2010, seminar was presented by Edmond J. Safra Lab Fellow Susannah Rose. Susannah's research focuses on patient advocacy groups and their possible dependencies on pharmaceutical companies and other for-profit entities. Seminar participants discussed the ambiguous nature of these groups, both in terms of the many roles they fill, as well as the difficulty of defining when harm has been committed. Given their ambiguous nature, the difficulty of creating a certification for independence was discussed, and participants debated whether it would be wise to create a metric by which the relative independence or trustworthiness of an organization could be measured.

A recurring theme throughout the discussion was the difficulty of defining the role of patient advocacy groups. Because these groups are so varied and fill so many roles--providing research, recommendations, marketing, lobbying, and direct service--stating what is within their boundaries and what isn't can be a complicated endeavor. Though many of them receive money from pharmaceutical companies, it can be difficult to pinpoint how or if that money influences them, and even more difficult to define whether any harm has resulted from that influence. 
There was some discussion about whether patient advocacy groups should be guided by a sense of professionalism, though it was pointed out that it might be problematic for them to be guided by the same ethical considerations as physicians, as their mission often puts them in opposition to each other.

Some participants raised the question of marketing by patient advocacy groups and the extent to which pharmaceutical companies outsource their marketing to them. For some participants, the fact that a pharmaceutical company would have a patient advocacy group market their drug was a clear indication that something wasn't quite right. Otherwise, why wouldn't the company do their own advertising? Other participants pointed out that if the drug works extremely well and their interests are aligned, then there shouldn't be a problem with the patient advocacy group advertising the drug.

When the topic of independence was introduced, it was pointed out that many of these patient advocacy groups are not conscious of a need to distinguish themselves as independent. In order to convince them of this need, it would be necessary to demonstrate the value of being designated an independent organization. However, this raised the issue of the public goods problem: how should they be funded so that they can remain independent (or at least properly dependent)?

In summary, participants discussed the many roles of patient advocacy groups, the difficulty of defining those roles, and the ways in which they may be influenced by receiving funding from pharmaceutical companies and other for-profit entities. Finally, they attempted to discern how harm could be measured and quantified, in order to better make a case for independence.