Ellen Stewart

What is the point of citizen participation in health care

Does citizen participation in health care planning and provision have a clear purpose? Can it reasonably be considered a unified phenomenon? Current conceptual accounts – including a range of typologies descended from Arnsteins ubiquitous but misunderstood ‘ladder of participation’ – are inadequate. The popularity of citizen participation belies fundamental uncertainties about what it entails and its associated benefits. A more pragmatic and less normative usage of the term is vital for the future.

We Need to Talk about Impact: Why Social Policy Academics need to Engage with the UK's Research Impact Agenda

Of all the social sciences, social policy is one of the most obviously policy-orientated. One might, therefore, expect a research and funding agenda which prioritises and rewards policy relevance to garner an enthusiastic response among social policy scholars. Yet, the social policy response to the way in which major funders and the Research Excellence Framework (REF) are now prioritising ‘impact’ has been remarkably muted. Elsewhere in the social sciences, ‘research impact’ is being widely debated and a wealth of concerns about the way in which this agenda is being pursued are being articulated. Here, we argue there is an urgent need for social policy academics to join this debate. First, we employ interviews with academics involved in health inequalities research, undertaken between 2004 and 2015, to explore perceptions, and experiences, of the ‘impact agenda’ (an analysis which is informed by a review of guidelines for assessing ‘impact’ and relevant academic literature). Next, we analyse high- and low-scoring REF2014 impact case studies to assess whether these concerns appear justified. We conclude by outlining how social policy expertise might usefully contribute to efforts to encourage, measure and reward research ‘impact’.

‘Black magic’ and ‘gold dust’: The epistemic and political uses of ‘evidence tools’ in public health policy-making

Concerns about the limited influence of research on decision-making have prompted the development of tools intended to mediate evidence for policy audiences. This article focuses on three examples, prominent in public health: impact assessments; systematic reviews; and economic decision-making tools (cost-benefit analysis and scenario modelling). Each has been promoted as a means of synthesising evidence for policymakers but little is known about policy actors’ experiences of them. Employing a literature review and 69 interviews, we offer a critical analysis of their role in policy debates, arguing that their utility lies primarily in their symbolic value as markers of ‘good’ decision-making.

Beyond NIMBYs and NOOMBYs: what can wind farm controversies teach us about public involvement in hospital closures?

BackgroundMany policymakers, researchers and commentators argue that hospital closures are necessary as health systems adapt to new technological and financial contexts, and as population health needs in developed countries shift. However closures are often unpopular with local communities. Previous research has characterised public opposition as an obstacle to change. Public opposition to the siting of wind farms, often described as NIMBYism (Not In My Back Yard), is a useful comparator issue to the perceived NOOMBYism (Not Out Of My Back Yard) of hospital closure protestors.DiscussionThe analysis of public attitudes to wind farms has moved from a fairly crude characterisation of the ‘attitude-behaviour gap’ between publics who support the idea of wind energy, but oppose local wind farms, to empirical, often qualitative, studies of public perspectives. These have emphasised the complexity of public attitudes, and revealed some of the ‘rational’ concerns which lie beneath protests. Research has also explored processes of community engagement within the wind farm decision-making process, and the crucial role of trust between communities, authorities, and developers.SummaryDrawing on what has been learnt from studies of opposition to wind farms, we suggest a range of questions and approaches to explore public perspectives on hospital closure more thoroughly. Understanding the range of public responses to service change is an important first step in resolving the practical dilemma of effecting health system transformation in a democratic fashion.

Turnout, Information and Heuristics in the Scottish Health Board Elections: ‘Getting a CV with No Job Description’

British public services have traditionally been overseen by appointees. The idea that many of these posts should be filled by direct election, as a means of increasing engagement with local communities and accountability to them, appears to be gaining traction. In Health Board election pilots in 2010, the Scottish government replaced appointees to regional Health Boards (serving six-figure populations) with popularly elected members. The government attempted to maintain the insulation of Health Boards from party politics by restricting the use of partisan labels. Voters were deprived of a heuristic that usually helps them to decide how to cast their votes. Many electors did not vote, while others sought alternative heuristics. Interviewees simultaneously decried partisan politics, lack of information and low turnout by the rest of the population. These dislikes seem to conflict with each other. Moreover, the experience shows how the heuristics available to voters can shape democratic governance.

Scotland’s NHS: Citizen Participation and Mutuality in Scottish Health Policy

In Chapter 1 I introduced the subject of participation in healthcare in international contexts. Throughout this book I work with empirical material from the Scottish NHS as a case study of how participation has been attempted in practice, across one health system. This is not because Scotland is an outlier, taking a particularly radical, effective (or indeed, ineffective) approach to the challenges of ‘doing’ participation. It is partly a function of the unusual breadth of empirical data I accumulated (working alone, or with colleagues) in Scotland between 2009 and 2014, ranging from interviews with ‘ordinary’ citizens and frontline staff to senior civil servants and managers. However, it is also an intellectual choice, because in the 15 years since devolution, the Scottish health system had been in an unusual state of flux, in which the path dependency which shapes so much of day-to-day policy in most health systems (Greener, 2002) was, if not negated, at least called into question. As successive administrations have sought to define a way forward for the NHS in Scotland (and in the case of the Scottish National Party administrations from 2007 onwards, to define a way forward which breaks with the past and current status quo elsewhere in the UK) an eclectic and at times downright contradictory set of policy tools as evolved.

Seeking outsider perspectives in interpretive research: young adults and citizen participation in health policy

Policy researchers face a range of pressures to incorporate the perspectives of ‘hard-to-reach’ groups in their research. In the specific case of public involvement policy in health (one example of the growing field of citizen participation initiatives in administrative contexts), researchers have struggled to accomplish this without compelling research participants to enter into a policy discourse that is unfamiliar and may be at odds with their self-understood roles as patients and citizens. This paper presents findings from an interpretive project which sought to understand the perspectives of young adults on local practices of public involvement in a socio-economically deprived area of Scotland. It recounts the researcher’s shifting standpoint in response to silences and absences within young adults’ reaction to the project, and argues that the everyday ‘tactics’ young adults described using in their interactions with health services be reimagined as relevant, albeit challenging forms of citizen participation.

Introducing Citizen Participation in Health Systems

There is a broadly based consensus across the political spectrum that opportunities for citizen participation should be encouraged, as both an intrinsic ‘democratic’ good and a route to myriad benefits, from efficient public services to more cohesive communities. This is not new; writing in 1970s America, Pateman (1976, p. 1) said that the term had become so ubiquitous that ‘any precise, meaningful content has almost disappeared’. However, contemporary calls for participation differ, in important ways, from the radical demands of the 1960s and 70s. Polletta (2014, p. 457) argues that: participatory institutions [of the 1960s] were seen as firmly outside the establishment. Today, they are the establishment. The arguments then for participation were principled. Today, they are practical … In an important sense, participatory democracy has gone mainstream.

Administering the System: Citizen Participation as Committee Work

Inviting citizens to join either existing or standalone committees is a key tool for healthcare organisations seeking to engage with their publics. This mode of participation is one of the most traditional ways for healthcare organisations to ‘do’ participation. In a systematic review of patient and public involvement in the UK NHS, Mockford et al. (2012, p. 30) identified committee-type roles ranging from ‘lay membership of NHS managerial boards … to patient involvement in condition-specific groups of individuals with a solitary aim’. In an international review, Mitton et al. (2009) include a ‘standing citizens’ advisory panel’ as one of 15 ‘methods of engagement’ identified, and found research reporting 51 instances of this form between 1981 and 2006. From Community Health Councils, to Public and Patient Involvement Forums, to Local Involvement Networks and Local Healthwatch, the UK, and latterly English, NHS has repeatedly turned to the creation of standing committee-style spaces as the key route for public influence in local healthcare organisations (Baggott, 2005; Mullen et al., 2011). The Australian health system has ‘Community Advisory Committees’ with similar remits (Mack, 2010). Lay representatives can be chosen either to represent a generic ‘lay’ perspective, or to compensate for the under-representation of specific groups.

Playing the System: Citizen Participation as Subversive Service Use

In this chapter we move from the dramatic mode of protests within health systems to an alternative uninvited mode of action. By contrast to its uninvited sibling, this mode is so quiet as to be nearly inaudible, and sits at the very boundary of public and private action in health systems. As such, it provides a particularly puzzling challenge both to policies for participation in health systems and to the existing conceptual structures by which we usually analyse them.