Public involvement in health priority setting: future challenges for policy, research and society

Abstract

Purpose – The purpose of this paper is to reflect on the findings of this special issue and discusses the future challenges for policy, research and society. The findings suggest that challenges emerge as a result of legitimacy deficits of both consensus and contestatory modes of public involvement in health priority setting. Design/methodology/approach – The paper draws on the discussions and findings presented in this special issue. It seeks to bring the country experiences and case studies together to draw conclusions for policy, research and society. Findings – At least two recurring themes emerge. An underlying theme is the importance, but also the challenge, of establishing legitimacy in health priority setting. The country experiences suggest that we understand very little about the conditions under which representative, or authentic, participation generates legitimacy and under which it will be regarded as insufficient. A second observation is that public participation takes a variety of forms that depend on the opportunity structures in a given national context. Given this variety the conceptualization of public participation needs to be expanded to account for the many forms of public participation. Originality/value – The paper concludes that the challenges of public involvement are closely linked to the question of how legitimate processes and decisions can be generated in priority setting. This suggests that future research must focus more narrowly on conditions under which legitimacy are generated in order to expand the understanding of public involvement in health prioritization.

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

“…The meanings of patient and public involvement (PPI), and the various terms associated with it, have long been debated. There is a considerable lack of consensus in the academic community about the meaning of PPI and its purpose, with words such as ‘involvement’, ‘participation’, ‘engagement’ and ‘empowerment’ used interchangeably …”

Involving citizens in priority setting for public health research: Implementation in infection research

“…In this sense, PPI at the policy level seems to stop at informing patients and the public about research but does not partner them in the decision process of setting priorities for research, and hence a long way from citizen‐led priority setting . Despite a growing body of literature exploring citizen‐led priority setting, there is little evidence to support the feasibility of large‐scale interventions to collect views of citizen priorities for infection research. Greater understanding of how to facilitate such an intervention and the potential challenges and biases associated with this is yet to be defined.…”

Asking the public: Citizens´ views on priority setting and resource allocation in democratically governed healthcare

“…The idea behind adding knowledge about the citizens´ perspective to other kinds of support for resource allocation decisions, is unambiguously linked to the assumption that such undertakings would increase the legitimacy of priority setting (Hunter et al, 2016;Clark & Weale, 2012). In literature on public justification of priority setting, ῾legitimacy᾿, ῾confidence᾿, ῾trust᾿ and ῾acceptance᾿ are frequently used concepts, connected, but also somewhat different (Nedlund, 2012;Nedlund & Baeroe, 2014).…”

“…Furthermore, this is a very context-sensitive research area (and for that matter also design-sensitive). Findings of public views on priority setting could not automatically be generalised from one country to another, or from studies with one research design to another (Busse, 1999;Coast, 2001;Hunter, Kieslich, Littlejohns, Staniszewska, Tumilty, Weale & Williams, 2016). In this thesis I will concentrate on the Swedish healthcare system and its political, ethical and organisational context.…”

“…Another common argument for asking citizens, is educational, and about raising the publics´ awareness of priority setting (Frankish et al, 2002;Hunter et al, 2016;Williams et al, 2012). The intention is then not just to capture social values, the intention is also to inform the public in order to promote acceptance for rationing in healthcare (Williams et al, 2012).…”