The snakes and ladders of user involvement: Moving beyond Arnstein
Introduction
Recent health service reforms in Western countries emphasise public and patient involvement [1], [2]. Increasing participation of users in decisions around treatment, service development, and evaluation has been central to this process. The consequences are becoming clear as relationships between the state and citizens and between the public, patients and organisations within the healthcare system are redrawn. This shift in health policy has generated significant debate in both Government and the media. The key document that continues to shape the theoretical framework for user involvement is Arnstein's “A ladder of Citizen Participation” published in 1969 [3]. Despite its important in shaping thinking this model continues to be applied uncritically, despite thirty-five years of progress in our understanding of the factors that drive engagement.
In this article, we explore the relevance of Arnstein's typology of user involvement to current developments in healthcare, particularly within the English National Health Service (NHS), and draw on comparisons from the Nordic countries, the Netherlands and Canada. The choice of these countries is based on common claims to provide universal healthcare, commitments to equity and expectations that health services engage with community organisations [1], [4], [5]. In addition Canada and England consider lay members on the boards of healthcare organisations as the primary form of public involvement [6], [7].
We use these examples, and the published literature, to critique Arnstein's claim that “citizen participation is a categorical term for citizen power. It is the redistribution of power that enables the have-not citizens, presently excluded from the political and economic process, to be included in the future.”[[3]: p. 216]. We elaborate a more nuanced model of user involvement. We argue that user engagement and empowerment are complex phenomena through which individuals formulate meanings and actions that reflect their desired degree of participation in individual and societal decision-making processes. Patient and public involvement is more likely to fail, therefore, when there is a mismatch of expectation or method. Rather than rely, as Arnstein does, on models of participation constrained by a specific conceptualisation of activism, we conclude that user involvement requires dynamic structures and processes legitimised by both participants and non-participants. These processes must be empowering and enabling at four levels: healthcare system, organisation, community, and individual. Users must have agency and the ability to shape the methods used for their involvement; these may change over time. Such an approach is more likely to lead to efficient and effective user involvement, building a better health service from the perspectives of users and health professionals.
An urban redevelopment specialist, Arnstein illustrated her typology of citizen participation in decision making with examples from the U.S. Department of Housing and Urban Development Modern Cities programme. Despite the particular context of her evidence, she suggested that her model was more broadly relevant. “The underlying issues are essentially the same – ‘nobodies’ in several arenas are trying to become ‘somebodies’ with enough power to make the target institutions responsive to their views, aspirations, and needs.”[[3]: p. 216].
For Arnstein, the sole measure of participation is power to make decisions and seizing this control is the true aim of citizen engagement. Thus, the different rungs on her ladder relate directly to the degree to which citizens have attained decision making power with complete citizen control being defined as the highest point (see Fig. 1). Moving from the lower rungs labelled Manipulation and Therapy through Informing, Consultation, and Placation only the top three steps – Partnership, Delegated Power, and Citizen Control – demonstrate citizen power. Lower rungs are differentiated by the limitations of citizen power and its replacement with participation that does not necessarily influence decision-making. The starkness of Arnstein's framing of citizen participation as an overt struggle for power between government officials and community activists being played out in settings varying from community halls to committee rooms, each party yielding the minimum ground, has been a touchstone for policy makers and activists for 35 years.
Various commentators have redesigned Arnstein's model. Wilcox's [8] ladder has five rungs that reflect various aspects of user involvement: deciding together, acting together, supported independence, while Burns’ ladder of citizen empowerment attempts to incorporate degree of participation and quality of engagement [9]. Others have applied the model to working with young people [10], [11]. Only Choguill's [12] adaptation, for use in “underdeveloped countries”, considers explicitly the potential for organisations to exert a malign influence under the guise of user involvement. Despite the interpretations, refinements, and revisions of Arnstein's model, they retain a hierarchical approach and uncritically embrace citizen control as the pinnacle of involvement. The lack of complexity in the conceptualisation of the protagonists in Arnstein's model, its failure to consider the process as well as outcome, or the importance of methods and feedback systems, means that a more nuanced model is required to guide current challenges to user involvement and public participation. In addition other models of user involvement in health have been developed particularly in the last 20 years [13], [14], [15], [16] as well as more broadly [17].
Section snippets
The justification of user involvement in health policy
This section explores the emergence of user involvement in contemporary health policy. We review British policy, particularly for the NHS in England, before contrasting this with other national settings. Despite widespread public support for the NHS and its principles, its responsiveness to its users has been criticised [18]. User involvement is presented as initiating a constructive dialogue aimed at reshaping the relationship between patients, healthcare professionals and the public and as a
Theoretical justifications for user involvement: Voters, taxpayers and consumers
The diversity of approaches to user involvement is often a reflection of different theoretical bases but chief among these is the need for health services to be accountable to users as taxpayers, voters and consumers. These three aspects of accountability are highlighted in UK policy and are often used interchangeably as illustrated in the following quote outlining the inspiration for NHS reform.
“…a commitment to give people at a local level the power to make decisions about the range of
Problems with Arnstein's ladder
Our critique of Arnstein's model has three main strands: missing rungs, snakes and multiple ladders. We outline missing rungs that relate to key factors in user involvement that Arnstein's model does not consider. Secondly, we identify some adverse effects of applying Arnstein's model; we refer to these as snakes. Our third category of criticisms reflects the limitations of a model that focuses on the single dimension of power – a single ladder – and is interested only in outcomes, rather than
Missing rungs
Arnstein ignores several aspects of user involvement by failing to differentiate between method, category of user and outcome. The pre-conditions for users to become involved, trusting in the process and the outcomes and the tension between involving some people intensively and involving many people in a limited way, are also excluded from her model. Finally, the hierarchical approach embraced by Arnstein's ladder leaves little opportunity to engage in evaluating the nature of involvement.
The Snakes lurking in Arnstein's ladder: critiques of the model
In addition to its limitations – the missing rungs – Arnstein's ladder also ignores the appearance of several dangerous snakes all of which limit or undermine the ability of this model to increase user involvement in healthcare. Particular snakes relate to the impact of the model on users and voluntary organisations, its potential to limit sustainability and promote decisions based on ‘the tyranny of the majority’.
Arnstein says little about ensuring the sustainability of any development
Multiple ladders
Arnstein's definition of user involvement is one-dimensional, based on user's power to act in formal decision-making processes. Such an approach, as we have already noted, takes little account of the distinct, but overlapping, theoretical justifications or types of user involvement. Involvement may be a governance mechanism, a method of releasing or enhancing social capital, or a feature of service delivery [61]. Within these categories, user roles vary from participation in decisions about
A new approach: avoiding the snakes and the ladders
Developing and applying a more realistic model of user involvement requires a move beyond the dichotomy of representative versus other, inclusion versus exclusion that are Arnstein's focus. Instead, a variety of involvement methods that tap into complementary communities of users, draw people at different points in their life, illness or care pathway is required to ensure relevance for different types of user involvement. Effective user involvement must be founded on connections to a
Conclusions
For 35 years, Arnstein has been central to developing our thinking on the engagement between individuals and public sector elites. The world has changed and the policy concerns and conflicts that shape contemporary health environments are different. Policy makers need to be aware that applying Arnstein's model closes off options. Just as an overemphasis on ensuring statistical representativeness in user involvement blocks attempts to begin to involve users, Arnstein's emphasis on the transfer
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