Democratizing Health
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Democratizing Health

Consumer Groups in the Policy Process

Edited by Hans Löfgren, Evelyne de Leeuw and Michael Leahy

This book examines the important role of consumer activism in health policy in different national contexts.
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Chapter 15: Health Policy in the United States: Consumers and Citizens in a Market Polity

Christina Nuñez Daw, Denise Truong and Pauline Vaillancourt Rosenau


Christina Nuñez Daw, Denise Truong and Pauline Vaillancourt Rosenau Patients and consumers in many countries attempt to influence health policy directly and indirectly across the domains of government, the private sector and research (Baggott and Forster 2008; Baggott et al. 2005). The United States, however, does not have a robust history of citizen or consumer participation in health care policy or governance at the national level. This contrasts strikingly with the experience of other industrialized countries (Litva et al. 2009; Learnmonth et al. 2009). There are two forms of consumer engagement – through assigned roles within established decision-making bodies and through activist-oriented groups that come together to advance specific agendas affecting patients and families. In this chapter we present a review of salient examples in the United States, broadly canvassing both approaches. In addition, we do not take for granted that patient participation is always genuine empowerment. On occasion it may be merely ‘pro forma’ (Van de Bovenkamp and Trappenburg 2009a, 2009b). There is very little systematic research on consumer involvement in US health care policy. But this is no surprise. It has been observed that there is ‘little evidence that [citizen] groups have had much effect on health policy’ (Weissert and Weissert 1996). In an initial literature search, we identified over 200 peer-reviewed research publications and found 69 articles relating in some way to consumers and health care policy. But the vast majority of these treated the consumer strictly as a user of a product – health care. This perspective...

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