Public involvement policies in health: exploring their conceptual basis

Abstract

Despite its obvious appeal, the concept of public involvement is poorly defined and its rationale and objectives are rarely specified when applied to current health policy contexts. This paper explores some of the underlying concepts, definitions, and issues underpinning public involvement policies and proposes a set of criteria and questions that need to be addressed to allow for the evaluation of public involvement strategies and their impact on the health policy process. It aims to further our understanding of the role that public involvement may play in contributing to health systems that are responsive to the needs and priorities of the public, and, ultimately, providing better health and health care services to the community at large.

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

“…The first two models follow the two rationales most commonly encountered in the literature on PPI in health care: a consumerist and democratic rationale. The first draws on individual consumers rights in health care (access to full information and freedom to choose) and the second on the rights of citizens (and taxpayers) to democratic decision-making on a policy or collective level (Wait and Nolte, 2006;Tritter, 2009;Tambuyzer et al, 2014). These rationales apply to guideline development when guidelines are considered, respectively, as decision aids for patients (Van Veenendaal et al, 2004), or as policy-oriented documents on whose basis health care services can be (re)designed ( Van de Bovenkamp and Trappenburg, 2009).…”

Role of patient and public participation in health technology assessment and coverage decisions

“…All but one of the national processes elicited the views of patients and/or the public during the actual assessment of the technology (preparation of the HTA) [15]. However, the type and number of approaches employed varied across processes.…”

Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia

“…The findings demonstrate that key issues include, but are not limited to, the framing of patients as consumers (Thompson, 2007), possible misconceptions about the equal distribution of power between 'consumers' and health care system managers (Dugay and Salaman, 1992), and the framing of patients as ill-equipped to participate (Sen, 1992) or as not being considered key stakeholders with the right to be involved in policy decisions (Wait and Nolte, 2006). Our research identifies a consensus on the inadequacy of current involvement processes but, more than this, it also identifies a deeper issue underlying this consensus, namely a divergence in the conceptions of evidence held by patient organisations and decision makers.…”

“…Nonetheless, patients can still be regarded as key stakeholders with the right to participate in policy decisions that will affect them, thus commending decision-making processes that are inclusive and democratic (Wait and Nolte, 2006). In this study, we deliberately use the term 'patient' to emphasise the potential power differentials between patients and health funding decision makers.…”