Patient Advocacy in University Clinical Research
A Google search for "patient advocacy" + disease + research in the .edu domain yields about 26,500 English pages. Two of the interesting sites high on the hit list are from the University of Wisconsin and Brandeis University.
The Wisconsin site is from the Center for Patient Partnerships in the Law School. They state their primary functions as
- "Patient Advocacy - We help patients with cancer and other serious or chronic diseases make informed decisions and get the care they need - acting in real partnership with health care providers.
- Education - We teach future health care providers, social workers, policy makers, lawyers, patients and others the principles and practices of patient-centered care and patient advocacy.
- Research - We foster and disseminate knowledge about patient-centered care models and practices, in Wisconsin and nationally."
A different focus is seen in a lecture that Zach Hall, Vice-Chancellor for Research at UCSF, gave in the M.R. Bauer Distinguished Guest Lecturer Series at Brandeis University. The summary of his talk concludes with the paragraph
Finally, ("Political Advocacy") patient advocacy groups are among the most important lobbyists in Washington for biomedical research. They bring to the Congress the personal dimension of disease research and a sense of focus and zeal. Although scientists agree with the advocacy groups on the ultimate aims of research, they often differ on how to get there. Patient advocacy groups are intensely focused on a single disease or group of diseases, are interested in short-term results, and are often competitive with each other for the science dollar. Increased understanding and continuing education are essential to a strong working relationship with these groups. In advocacy, both for specific causes, and for the larger enterprise of biomedical research, we must emphasize the possibilities offered by science, but must do so responsibly and realistically.
In these two quite different but often overlapping modes, university medical centers engage with the public - their patients and families - in ways that complicate but enrich the clinical teaching and research environment.