Medicus: Susannah Rose
A 2017 study published in JAMA Internal Medicine found that patient advocacy groups are less biased than patients prefer them to be. Based on anonymous survey results, the study confirmed that advocacy groups have little independence and allow their policies to be influenced by third-party donors. Leading researcher and custodian in the field of bioethics Dr. Susannah Rose, who led this research, reassures us, however, that the industry is much more nuanced than this.
Advances in biotechnology and healthcare have been growing and evolving rapidly, begging for the need for research into the ethical, legal, and social implications thereof. At the forefront of this field is Rose, who specializes in applying normative ethics to healthcare policy-making in the US. Rose, who completed her PhD in Health Policy and Ethics in 2010 at Harvard University, has developed expertise in direct data collection methodologies and quantitative data analysis.
Currently Scientific Director of Research in the Office of Patient Ex- perience and Assistant Professor in the Department of Bioethics at Cleve- land Clinic in the US, Rose describes her role as “being responsible for developing and leading health-services research focused on patent/family perspectives”. Prior to this she was Director of Bioethics Research and Policy and held a fellowship at her alma mater.
She has published two books that focus on helping patients and family members cope with cancer and has published and presented in academic venues on topics related to conflicts of interest in medicine, health policy ethics, oncology, and clinical bioethics. The titles of some of her more prolific work include ‘Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust, and Trustworthiness’, ‘Effect of Financial Relationships on the Behaviors of Health Care Professionals: A Review of the Evidence’, and ‘Relationships between Authorship Contributions and Authors’ Industry Financial Ties among Oncology Clinical Trials’.
Rose’s interest in bioethics developed when, as a social worker, she referred clients with cancer to patient advocacy groups that she trusted. She worked as a clinical social worker (for which she has an MSc from Columbia University) and researcher at Memorial Sloan Kettering Cancer Center in New York City, specializing in the psychosocial issues surrounding cancer. What she expected from these patient groups was unbiased guidance and advice, but she soon realized that these groups were potentially receiving funding from big pharmaceutical companies. She began to investigate and soon found that two-thirds of patient advocacy organizations reported receiving funding from big pharma.
Although the implications of these relationships require further study, many fear that advocacy groups in such a position have lesser agency to express their concerns regarding issues such as patient mistreatment or misinformation. To illustrate, a diabetes advocacy group might start endorsing sugary foods and protect the market of its donor, therefore exploiting those from whom it has gained trust. However, as Rose stresses, making a sweeping statement about corruption because of this link does not consider the nuances of the different types of relationships between hospitals, researchers, physicians, and big pharma. “Those relationships may in fact benefit patients, enhance medical research, and help advance patient care,” she explains.
In this case, then, the relationships between medical practitioners and industry require greater transparency. Perhaps even more important, though, is the commitment of professionals with expertise in seeing beyond smokescreens and providing empirical data to speak truth to power. The global community is all the richer thanks to the likes of Rose.