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 2: Health Activism in the Age of Governance

Timothy Milewa


Timothy Milewa User-oriented mobilizations in and around health care and health policy are diverse in nature and intent. At a more general level they reflect an interpolation of the private, individualized sphere of the self, body and illness experience into the political, regulatory and organizational realms where issues of entitlement, service funding, quality and the nature and parameters of expertise are contested. A focus on the sociological or social-psychological dimensions of these mobilizations thus needs to be balanced by consideration of some of these broader contexts and influences. This chapter reflects on the emergence and activities of health activist groups within the context of multi-actor forms of governance and networked policy interventions involving diverse stakeholders in the public, private and third sectors. These developments constitute more than the context or backdrop to health-related activism. By their nature, health activist groups are consciously or unconsciously engaged in a politics of institutional design through which narratives of inclusion, exclusion, fragmentation and legitimacy are formulated and enacted. They both reflect and co-constitute (often asymmetrically) new, fluid instances of the public sphere – the ground on which dialogue takes place beyond formal institutional arenas and prescribed forms of expression and communication. These instances not only facilitate engagement and dialogue but may also offer opportunities to question fundamental precepts (such as those to do with distributive principles related to goods like health care) and the viability of established and emerging modes of decision-making. The extent to which health activist groups engage with, challenge or even begin...

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