Public participation: more than a method? Comment on “Harnessing the potential to quantify public preferences for healthcare priorities through citizens’ juries”

Abstract

While it is important to support the development of methods for public participation, we argue that this should not be at the expense of a broader consideration of the role of public participation. We suggest that a rights based approach provides a framework for developing more meaningful approaches that move beyond public participation as synonymous with consultation to value the contribution of lay knowledge to the governance of health systems and health research.

Public participation: methods matter; a response to Boaz et al.

“…This allowed us to develop a more rounded appreciation of the costs and benefits of practical forms of deliberative democracy. These practical investigations are, we believe, important when debating the principles of participation and in particular the concern raised by Boaz et al about the achievement of 'genuine' participation (2). Ever since Arnstein proposed the concept of a ladder of participation in 1969 (4), there has been a tendency to impose a normative dimension onto what was essentially an analytical construct, such that moving up her ladder leads us towards more 'genuine' forms of participation and may even be seen as a stairway to participatory heaven (5).…”

“…he commentary on our paper from Boaz et al is both welcome and pertinent, especially in its call for greater critical attention to be paid to some of the underlying principles of participation as well as to techniques and methods (1,2). In some respects our paper and subsequent research was designed to allow us to measure and better understand the impact of participating in a citizen's jury on the jurors' views and expressed preferences (1,3).…”

Creating sustainable health care systems

“…Yet, while there has been a tremendous drive to stimulate public participation in making these tough decisions over the last 20 years, it is apparent that the policy aspiration of public involvement has raced ahead of the establishment of an evidence base underpinning it (Abelson et al, 2013). Researchers are now seeking to address this issue (Scuffham et al, 2014) but it seems that the policy-level debate between a Humanities/Legal and Methodological/Health Economic approach at a national policy level described in the previous section is also being re-enacted at a research level in the field of public participation (Boaz et al, 2014;Burton et al, 2014). In a commentary on an extensive research programme comparing citizen councils and discrete choice methods to elicit public priorities and preferences in two key areas for health carethe use of emergency services and management of obesity (Harris et al, 2015(Harris et al, , 2018Scuffham et al, 2016Scuffham et al, , 2018 -Boaz refers to the argument that researchers often focus on the hardware of participation (the how to, methods, approaches, guidelines, etc.)…”

“…The first is a “rights-based” approach and the second is referred to as “priority setting”. Protagonists of the first, such as Boaz (Boaz et al , 2014), suggest that this should be the dominant paradigm. The right to health is enshrined in the United Nations (UN) Declaration of Human Rights (UN, 1948) and further established in the UN International Covenant on Social Economic and Cultural Rights (UN, 1966), which defines “the right to the highest attainable standard of health”.…”

Public and Patient Involvement and the Right to Health: Reflections from England

“…We acknowledge the reality that participation is becoming mainstreamed and the danger that participation becomes appropriated and another word for limited consultation. In order to guard against this, human rights defenders need to find ways of reclaiming participation and of ensuring it influences social accountability and the enforcement of legal remedies through compensation, prevention and redress of human rights violations (Boaz et al, 2014).…”