The final Lab seminar of the spring semester was presented by Edmond J. Safra Lab Fellow, Susannah Rose, on May 14, 2014. Rose received her PhD from Harvard’s Health Policy Program in 2010 and is now a Professional Staff Member in the Department of Bioethics at The Cleveland Clinic and an Assistant Professor at Case Western Reserve University, Department of Medicine. Her research currently focuses on investigating potential financial conflicts of interest among patient advocacy organizations, and analyzing national disclosure data related to COIs among physicians and academic medical centers. Additionally, she is a co-investigator on a research project testing different COI disclosure mechanisms. Her Lab seminar, titled, “Patient Advocacy Groups and Their Relationships with Industry: National Survey Results,” presented empirical findings from a national survey that she and her research collaborator, Dr. Steve Joffe of the Pennsylvania University (formerly at Dana-Farber Cancer Institute), designed to investigate advocacy groups’ financial ties to industry in the U.S., as well as their conflicts of interest policies.
Rose began the Lab seminar by explaining that she originally became interested in researching PAOs while working at the Sloan Kettering Cancer Center in New York City. As a clinical social worker, part of her job included routinely connecting clients with PAOs. Often trusting these organizations implicitly, Rose never questioned that PAOs were not doing the best things for their patients. However, over time she began thinking about concerns being raised in the literature and public media about PAOs and their relationships with pharmaceutical companies. Realizing that there was a dearth of empirical research on these types of organizations and their relationships with industry, Rose began to investigate these relationships through the lens of institutional corruption as a Graduate Fellow at the Edmond J. Safra Center for Ethics. At this point in the seminar, Rose admitted that though she might have hidden biases, she generally rests in a place of equipoise with PAOs and their relationships with industry. Put simply, Rose does not believe that PAOs are necessarily biased, but she also feels that these organizations should be examined closely so that the good they do is maximized and risks of harm are minimized. Moving on with the presentation, Rose sought to define exactly what it is that PAOs actually do.
Because it’s difficult to find a specific definition of PAOs, Rose defined PAOs in her own terms, describing them as formally organized organizations that concern themselves with medical conditions or potential medical conditions. Oftentimes these groups also have a mission to aid people with these conditions through direct counseling, financial assistance, educational initiatives, and medical advice. Further, PAOs also advocate for research policy changes through lobbying efforts, despite their resistance to acknowledge such efforts. Rose then offered some examples of prominent PAOs, which included the American Cancer Society (ACS), American Diabetes Association (ADA), American Heart Association (AHA), Cancer Care, and National Alliance on Mental Illness (NAMI). Moving on, she gave a brief overview of relevant and significant literature on PAOs, some of which she’s cited in her own research. Importantly, she noted that most contemporary studies are theoretical and do not provide national data regarding PAOs’ financial ties to industry, or what types of activities they are involved in. In light of this, Rose designed her study to characterize the financial relationships between industry and PAOs, to describe PAO activities and to elicit PAO leaders’ perceptions of how these relationships may affect those activities, and to gather information on what COI policies and forms of disclosure are used by PAOs.
Continuing with the presentation, Rose gave a detailed overview of the survey criteria and research methods she implemented for the primary data collection phase of her project. She explained that identifying the population of PAOs was quite challenging, and for purposes of her study, she narrowed the field to organizations that were non-governmental entities, and national in scope. Surprisingly, out of the 439 randomly selected organizations to which surveys were mailed, the rate of response was 65%, well above the target response rate expected and needed to perform a statistical analysis. At this point in the Lab presentation, Rose began to discuss some of her preliminary findings. She explained that nearly 50% of financial support for these groups comes from pharmaceutical and device companies, with the remaining sources of funding coming from food companies, hospitals, and a growing number of beauty and apparel companies. Not surprisingly, cancer organizations received the most funding. In terms of the activities that these organizations are involved in, survey results revealed that PAOs often host public forums, distribute materials to hospitals and doctor’s offices, disseminate newsletters, and direct educational activities. Moving on to a different point, Rose discussed her findings related to leaders’ perceptions on how relationships with industry might affect their organizational activities. Interestingly, qualitative responses provided examples of how pharmaceutical companies can pressur PAOs, including: to provide testimony during the FDA approval process, and to support narrowly targeted legislation. Though these organizations resisted giving into the demands of pharmaceutical companies, these examples raise concerns about the potentially corrupting influence of industry relationships, as well as enforce the need for more research.
In closing, Rose opened up the Lab seminar to group discussion. Participants of the Lab became engaged in a conversation about conflicts of interest. One Lab participant asked Rose what insights she’s gained from investigating COI policies—not just in PAOs, but in general. Rose commented that many organizations lack a deep understanding of conflicts of interest, and that these organization often manage COIs by process, focusing on personal conflicts, rather than identifying institutional conflicts. Furthermore, Rose explained that although it is now common for organizations to implement COI policies, the procedural aspects of these policies are usually insufficient, and the outcomes are poorly understood. She encouraged more research to be done in this area.