Examining How Patient/Health Advocacy Can Best Be Integrated Into Health Policy
Health advocacy and health policy continually interact. Patients speaking on their own behalf, and their advocates or surrogates, can powerfully influence policy and the capacity of public agencies to meet changing health needs. Research by Center faculty and affiliates documents the nature, structure, conditions and impact of such advocacy efforts, deriving from them lessons about how to ensure that a more balanced set of voices shape health policy in the future. We also study the legacies created by past policy initiatives relevant to consumer experience and consumer voice.
Past & Ongoing Research
The Role of Patients in Health Policy
Policy is a complex and important arena which patients are striving, increasing, to influence. A new volume co-edited by Rachel Grob, former CPP visiting faculty member Mark Schlesinger, and colleagues documents the historical role of patients in U.S. health policy. Patients as Policy Actors offers a groundbreaking account of one of the most important developments in the health field of the last fifty years: the rise of more consciously patient-centered care and policymaking in the United States. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients matter as both agents and objects of health care policy.
Consumer experiences and perspectives sometimes powerfully shape policy-making – yet these voices also too often still remain silent, silenced or ignored.
Everyone is touched by the health care system as recipient, surrogate recipient, or potential recipient of care. Nonetheless, the diversity of patients’ behaviors and advocacy strategies documented in these essays demonstrates the impossibility of identifying a unitary “patient voice” capable of articulating what people want and need. How, then, should policy-makers evaluate and weigh these multiple, sometimes competing voices? How can patient/consumer participation be incorporated into ongoing health reform as broadly, fairly, and democratically as possible? The contributors to this volume examine these critical questions from diverse perspectives in their essays, and then together develop a set of principles for integrating patient perspectives into a pluralistic conception of health policy-making.
Evaluating Consumer Assistance Programs Under Health Reform
Federal support under the PPACA for state-run consumer assistance programs (CAPs) represents the first national commitment to assist patients with access problems, while also providing potentially vital feedback to policymakers on health system performance. CPP faculty and colleagues assessed this initiative based on interviews conducted in 42 states.
Our evaluation focused on four core goals of the program: (1) embedding a commitment to patient empowerment within consumer assistance, (2) enhancing capacity to promote system-level reforms, (3) encouraging CAPs to collaborate with other programs, and (4) enabling CAPs to more effectively learn from experience. We also considered implications for evolving federalism in health policy, including the federal government’s capacity to transform state practices despite limited financial leverage. The results of this qualitative study of Consumer Assistance Programs were published in Health Affairs in February 2013.
Attuning Health Policy to the Diverse Experiences of Patients
CPP faculty and affiliates acknowledge the complications inherent in the laudable aspiration to “meet patients’ needs.” We are dedicated to addressing these complexities by defining and helping to create an infrastructure designed to elicit and respond to patients’ diverse experiences with finding, financing and using care.
In the CPP’s first Bonnie Berman Symposium, we developed a case study documenting how univocal patient advocacy fostered the recent dramatic expansion of newborn screening for heritable disorders. Extrapolating from the lessons we derived from this example, we proposed 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.
Research Under Development
Making Cost-Conserving Care Feasible
Reducing “use of clinical services of low or questionable value” might seem best focused on treatment choices. However, a prior choice frames treatment decisions – the choice of clinician, particularly one with a less intensive practice style. This prior choice may be doubly crucial: first, by creating a pre-commitment to less intensive care and second, by identifying MDs trusted to act in patients’ interests. Our project tests, in two stages, how to encourage such choices, using our extant experimental platform for MD choice, applied to a cross-section of Americans. Resetting the context of clinical choices in this way may reshape an array of cues – cognitive and emotional – that foster unnecessary services, but which have neither been studied nor used to leverage change.
Integrating Consumer Assistance and Navigation
As health care reform unfolds, its impact will depend crucially on evolving state regulation of health insurers and the emerging capacity of state-level programs to assist the public with insurance-related problems. These forms of assistance include informing choices among insurance policies, enforcing insurance regulations, and helping consumers resolve disputes about coverage. Assistance varies dramatically across states in terms of organizational strategies, resource allocation, and administrative practices, but the impact of this variation on consumers remains poorly understood. This proposed two-year study would (1) evaluate evolving state consumer assistance programs by interviewing state officials; (2) create a taxonomy of program structures and practices; (3) assess the impact of program variation on consumers.