Bonnie Berman Symposium: From Solo Voice to Chorus: Attuning Health Policy to the Diverse Experiences of Patients
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Martha Gaines, JD, LLM
Mark Schlesinger, PhD (bio)
March 31 2011
1 hour and 2 minutes
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.