Representation and legitimacy in health policy formulation at a national level: Perspectives from a study of health technology eligibility procedures in the United Kingdom

Abstract

Decisions about the availability of publicly funded new drugs, treatments and medical devices are of fundamental interest to patients, health technology manufacturers, clinicians and tax or insurance payers. The issue of who can claim to speak for whom in decisions made on behalf of significant proportions of the population may thus be central to the perceived legitimacy of decision-making procedures. This article focuses on the meaning of representation and legitimacy in relation to such decisions within the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom. Interviews with key informants ( n = 33) indicate potentially fluid and imprecise aspects of representation and legitimacy that are not necessarily addressed by formal structures for engaging and involving stakeholders in decision-making processes. The findings suggest that those charged with managing bodies such as NICE should adopt a flexible approach to engaging and involving stakeholders. The “representation” of relevant stakeholder constituencies in decision-making procedures is not, however, enough. The legitimacy of decision-making arrangements on behalf of wider society also depends upon transparent reasoned debate that affords different interests the opportunity to challenge, test or advance arguments about evidence in a manner that discounts preconceived ideas about the status and authority of protagonists.