Involving users in developing health services

Abstract

Representation is not enough; voices must be translated into action

Many European countries involve the public in decision making processes as part of health systems governance.¹ Moreover, the National Health Service is increasingly committed to promoting the involvement of the public in setting priorities and shaping policy and local services.² In the accompanying ethnographic study, Fudge and colleagues describe how user involvement, directed by policy, was implemented in the context of a local stroke modernisation programme.³ The study suggests that professionals and service users understand and practise user involvement in different ways according to “individual ideologies, circumstances and needs,” which has implications for the interpretation and implementation of policy and practice. The study is timely, given that the Department of Health wants to enhance public participation in health and social care and strengthen the onus on public bodies to consult with local communities about changes to services.⁴ This will present new challenges for services.

So what is the evidence on user involvement in health care? Systematic reviews suggest that involving patients can result in new or more accessible services and prevent the withdrawal of existing provision.⁵ Users can also contribute positively to services by acting as case managers, trainers, and researchers.⁶ A recent Cochrane review reported gaps in the evidence to support the effectiveness of involving users, although input from users improved the clarity of patient information and patients’ knowledge.⁷ Interviews conducted by users also elicited more critical feedback in surveys of satisfaction than those conducted by staff.

The World Health Organization has outlined a structure of public participation based on “voice” (information provided by users on their views and experiences), “representation” (the inclusion of users on boards and committees), and “choice” (the involvement of individual patients in healthcare decisions).¹ Others describe a ladder of participation ranging from “tokenism” to approaches that give citizens control.⁸ Although government policy encourages the active participation of users, the Cochrane review found no studies where users made decisions about services. Rather, users’ contributions tended to be marginalised within specific roles, as data collectors or providers of information. The review highlights the need to distinguish passive forms of input (where patients’ views are sought but have little potential to translate into action) from active input (where real influence and action is possible). Fudge and colleagues describe how users were involved in a range of activities aimed at improving services, although roles were restricted to particular modes of working within specific programmes.

Disabled people in particular have criticised service driven approaches that claim to devolve power but which essentially enact professional agendas.⁹ Such examples are reported in Fudge and colleagues’ study in relation to users’ priorities for developing stroke services. When users raised transport as a priority it was disregarded by professionals as falling outside the remit of the programme.

Evidence so far raises more questions than it answers. For example, although guidelines recommend various approaches to user participation depending on the type of group (patient or public), purpose of involvement, nature of the task, and users’ own preferences,¹⁰ little evidence is available to guide these decisions.⁷

Involving users from marginalised communities can present specific challenges because they are most likely to experience health inequalities as well as unequal opportunities and unequal treatment in other areas, such as housing and employment. Fudge and colleagues show that it is possible to recruit users from a deprived area by adopting different approaches, although participation rates were low and the authors provide no information on the social demographics of the people who volunteered. They also show that ongoing effort is needed to sustain recruitment.

Wider conceptual and methodological problems exist regarding the definition of user involvement and the measurement of its effect within the context of individual programmes. Fudge and colleagues also illustrate the difficulty of assessing “effectiveness,” especially when concepts are poorly defined. The question over whose outcomes or which outcomes count as indicators of success will depend on the different perspectives of the key stakeholders, and they constitute complex ethical and political decisions rather than merely technical ones.

The lack of concordance between experimental research and how complex social interventions work in practice has prompted alternative approaches to synthesising diverse sources of evidence.¹¹ Approaches to research which analyse the factors that contribute to the success of initiatives can enhance our understanding of how best to disseminate user involvement within organisations.¹² The ethnographic approach described by Fudge and colleagues shows that initiatives on user involvement are influenced, in part, by competing but coexisting professional ideologies informed by democratic principles versus a set of administrative procedures.

If we truly wish the public to engage in decisions about health and social care we need to distinguish between initiatives that provide opportunities for meaningful input and action and those that amount to little more than an “empty ritual.”⁸