Abstract
Efforts to advance public participation in health and other policies have been associated with the production of many models and how-to-do-it guides for change. While these may have a helpful part to play in improving public and patient/user involvement in research, in this article it will be suggested that they tend to over-simplify things. Instead it is argued that an essential first step to advancing public participation in health is to put it in the context of developing modern democracy more generally. This article will seek to do this by identifying four key stages in the development of public participation in health and social care. These phases will be headlined as: 1. Working for universal suffrage in representative democracy and the achievement of social rights, like the right to decent housing, education and health; 2. Provisions for participatory democracy and community development; 3. Specific provisions for participation in health and social care; 4. State reaction and service user-led renewal as conflicts and competing agendas develop. While the proposed article will look particularly at UK developments to do this, it will also draw upon international experience and highlight the wider relevance of these phases of development. It will make connections between the extension of representative and participatory democracy, considering the different locations in which efforts to extend participation have helpfully developed, for example, in learning and training, and research and knowledge production. It will also consider how efforts to extend participation have also been undermined by pressures to tokenise and co-opt them; the continuing barriers discriminating against some groups and, ways in which service users and allies have nonetheless sought to overcome these difficulties to take forward more inclusive and diverse participation in health and social care. It will focus on some particularly promising areas of development internationally in order to do this in which co-production and the development of user-led knowledge are key.
Highlights
There can be little doubt that there is currently significant and widespread interest in public and patient involvement in health and social care services, policy and research
There has been a surprising lack of progress in the development of such public and patient involvement in health and social care and a tendency to isolate the issue from its broader relations, for example, institutionalizing it as separate entity and abstracting it from its ideological connections
In this it reflects social or public policy more generally, where the tendency has long been for them to be treated as neutral technical matters. This gave rise to the discipline of social administration and a “social administrative” model for understanding and analyzing public policy. This was typified by Fabian social policy where the political was underplayed and policymaking presented much more as a matter of neutral technical expertise, best left to academic and other “experts.” It was service users’ exclusion from this process, their consequent revulsion from it and the political right’s populist attack on it that overlaid western social policy in the last quarter of the twentieth century and underpinned the emergence of conflicted understandings of public and service user involvement in health and social care (Beresford, 2016)
Summary
There can be little doubt that there is currently significant and widespread interest in public and patient involvement in health and social care services, policy and research. One of the earliest and still one of the most often cited and discussed of these, is Arnstein’s “Ladder of Citizen Participation” (Arnstein, 1969) The problem with such unidimensional approaches to participation is that while in some cases recognizing power differences, they still struggle to address its essentially political nature While they can have a helpful part to play in improving public and patient/user involvement and understanding of it, they tend to be reductionist, over-simplifying and ill-suited to dealing with the real life complexities and ambiguities of such involvement (Beresford and Croft, 1993; Wilcox, 1994; Tritter and McCallum, 2006). This was typified by Fabian social policy where the political was underplayed and policymaking presented much more as a matter of neutral technical expertise, best left to academic and other “experts.” It was service users’ exclusion from this process, their consequent revulsion from it and the political right’s populist attack on it that overlaid western social policy in the last quarter of the twentieth century and underpinned the emergence of conflicted understandings of public and service user involvement in health and social care (Beresford, 2016)
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