The Center for Patient Partnerships with the Schools of Medicine and Public Health, Nursing and Pharmacy, and the OB/GYN Department presented the first annual Bonnie L. Berman Symposium on Thursday, March 31st, 2011.
Click here to watch or download video of the lecture (opens in a new window).
Click here to read the text of the symposium presentation (PDF).
From Solo Voice to Chorus: Attuning Health Policy to the Diverse Experiences of Patients
National health care reform includes provisions intended to help patients cope with our maddeningly complex health care system, yet will also make that system even more complicated. How can reform responsibly acknowledge the complications inherent in the laudable aspiration to meet patients’ needs without becoming stymied by the complexity of that task? In this talk, we argue that the only way out of this conundrum is to create an infrastructure designed to elicit and respond to patients’ diverse experiences with finding, financing and using care. We begin with a case study documenting how univocal patient advocacy fostered the recent dramatic expansion of newborn screening for heritable disorders. Extrapolating from the lessons we derive from this example, we then propose a set of principles and policies designed to integrate a greater diversity of patient voices into a pluralistic conception of health policy making – a conception we argue will better serve both policymakers and the American public.
Bios:
Rachel Grob, Ph.D. is the incoming scholar in residence and director of national initiatives at the Center for Patient Partnerships. For the past eight years Dr. Grob has been associate dean of graduate studies and a faculty member in the Health Advocacy Program at Sarah Lawrence College. She is author of /Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking /(Rutgers University Press, forthcoming), co-editor of /Patients as Policy Actors/ (Rutgers University Press, 2011) and author of numerous articles.
Mark Schlesinger, Ph.D. is a professor of health policy and director of undergraduate studies at the School of Public Health and a fellow of the Institution for Social and Policy Studies at Yale University. He is author of multiple articles, past editor of the /Journal of Health Policy, Politics, and Law,/ and co-editor (with Dr. Grob) of /Patients as Policy Actors. /Dr. Schlesinger’s scholarship centers on peoples’ decision-making processes in complicated circumstances, such as evaluating medical experiences, choosing among health care providers, or assessing the legitimacy of health and social policies. Dr. Schlesinger will be a visiting scholar at the Center for Patient Partnerships in the summer and fall of 2011.