Consumer Participation in Health Policy Decisions: Empowerment or Puffery?

Abstract

Many consumers in today's society have increased access to information about health and medical care through books, videotapes, audiotapes, the Internet, and television programming. However, consumers often are excluded from involvement in health policy decision making because it is believed that they do not have the necessary expertise. In this paper, the following will be discussed: (1) the historic role of consumer involvement in health policy decision making, (2) an overview of major barriers that consumers have encountered in health policy decision making, and (3) strategies for overcoming these barriers so that consumer empowerment can be enhanced when they serve on health policy panels.

Patients as team members: opportunities, challenges and paradoxes of including patients in multi‐professional healthcare teams

“…However, these impediments do seem more profound in relation to user involvement, due both to the size of the gap between professionals ensconced in the norms, rules and rituals of the health service and users outside these, and due to the way in which micro‐level factors reinforce this gap. Given the time and effort needed to build integrated, trusting teams, the way in which the social, spatial and temporal organisation of pilots bolstered the initial disinclination of pilot staff to engage with users seems an important practical issue to address, if we are to move beyond the persistent problems of professional indifference to, or even subversion of, users’ views (Harrison and Mort 1998, Sleath and Rucker 2001).…”

“…And the way in which user‐involvement processes are set up often reinforces these divisions between staff and service users, with consultation often preferred over partnership, and a consequent arms‐length relationship between service users and staff (Martin 2008b). These features of public‐participation and user‐involvement processes are apparent in approaches adopted worldwide; for example, Canada’s regional and community‐level health organisations (Contandriopoulos 2004) and efforts in the United States to increase public participation in health policy and planning (Sleath and Rucker 2001).…”

Involvement of Consumers in Health Technology Assessment Activities by Inahta Agencies

“…Involvement of patients in formulation of questions, in assessments and in dissemination had received some consideration in the literature, although there was little that specifically related to the situation typically facing HTA agencies of routinely producing and disseminating advice for decision makers in health care, often with tight deadlines. Some of the literature on involving consumers with health research provided some issues to consider (3)(4)(5)(6). Common themes included interaction of consumers and researchers, resources, technical demands on consumers, training and education, nature and extent of consumer representation, matching consumer information and information from the literature, time demands and remuneration, and consumer impact on discussion and decisions.…”

Consumer involvement in cancer research: example from a Cancer Network

“…Some researchers feel that involving consumers may have certain technical issues which are difficult to address; for example, one research in the United States identified four factors for consideration before involving consumer involvement. These included (i) lack of knowledge of consumers regarding health care, (ii) lack of time and payment for consumer involvement, (iii) lack of procedures on how to select and integrate consumers and (iv) lack of understanding of how consumers affect the health‐care system . Similarly, one study in the UK also identified difficulties in involving consumers in cancer research and particularly pointed out the non‐representation of these groups, which get involved in research …”