Citizen involvement in creating good health and care

One an enduring critique of the limitations of professionally designed and led health services and public health programmes. It is not that health professionals are not needed, it is that the imbalance in power between lay and professional reduces choice, stifles options for change and results in a failure to address fundamental issues around how we live and the factors that shape our health.

The other set of ideas focuses on the value of community as a determinant of health. The positive role of social networks, lay insights and the power of peer support all contribute to health improvement and social support. There are opportunities and challenges if the Health 2020 vision for citizen empowerment is to become a reality.

It is in this context that URBACT 4D Cities is exploring citizens as co-producers of health in relation to health innovation, health systems and economic development. The aim of this paper is to provide a brief introduction to citizen involvement in health and to highlight contemporary issues for community-centred health systems.

What is citizen involvement and why do it?

It is useful to start with what is meant by citizen involvement. The core idea concerns people’s active participation as opposed to being passive consumers of health care. Many terms are used to define who is involved –‘health consumer’, ‘service user’, ‘community’, ‘citizen’ and ‘public’. Community is often used as a shorthand term for neighbourhoods or for groups of people linked by a common interest, but communities are in reality complex social structures and people have many different allegiances and identities. Overall there is strong evidence that social relationships, in particular having social support and wider networks, underpin good health. So while some citizen involvement is about the individual dimension, for example shared decision-making between clinician and patient, the collective dimension is important for public health.

Another key concept is that of power. Citizen involvement should lead to a shift in the balance of power. There are various ladders of participation that illustrate the continuum from tokenistic involvement through to consultation, collaboration and finally citizen control. The problem is this is a very simplified way of viewing involvement, built on an assumption that empowerment is the only goal. Contemporary debates acknowledge that there are many dimensions to citizen involvement and different situations call for different approaches which should be fit for purpose.

The rationale for citizen involvement has been well advanced over the years. Justifications fall into three broad areas:

- Involvement as a means to bring about better, more effective services or public health programmes better attuned to needs. In other words citizen involvement is a means to an end. The goal might be improved quality, identification of needs, increased uptake or more culturally appropriate health programmes.

- Empowerment as a health goal. Here participation is valued as both a process and an outcome leading to greater individual or community empowerment, increased citizen control and in some cases social action challenging the status quo. Approaches based on empowerment principles tend to be developmental and allow citizens to determine what should happen and what outcomes result.

- Rights-based justifications that emphasise democratic values and citizenship. These encompass the right of citizens to participate in their health care and collectively to have some voice in health planning.

How does citizen involvement work?

Citizen involvement is a broad field where there is a huge range of methods, tools and frameworks for practice. This is not because of a lack of consensus on what to do, it is because different involvement methods need to be matched to the purpose of involvement, the social context and population. For example, the methods used to involve individuals with lived experience of diabetes in designing health education materials would be different from a community consultation around health impacts of a transport strategy. A recent project by Public Health England and NHS England has mapped the different approaches that can be used to actively involve communities in health. The ‘family of community-centred approaches for health and wellbeing’ includes community development, time banking, volunteer and peer models, community engagement in planning, research and regeneration and community hubs.

Community-centred approaches are complemented by individual-level approaches. For example, recent work by the King’s Fund, a leading UK think tank, has drawn together research on patient activation looking at how individuals can gain the skills and confidence to engage in their own health and care. There has also been a growing interest in the UK in coproduction approaches, where design and delivery of health and social care is achieved through genuine partnerships between professionals and service users.

Citizen involvement is rarely a stand-alone activity and can be nested within wider initiatives. One European example where a tradition of community involvement has flourished alongside action on the wider determinants of health is the Healthy Cities movement. Cities participating in the WHO European Healthy Cities Network have been found to be actively involving citizens in consultations, representative decision-making structures and health empowerment projects.

What emerges from the rich tradition of citizen involvement in the UK and internationally is the importance of the quality and depth of relationships between citizens and public services. This requires attention to aspects such as organisational capacity, workforce development, diversity and equality, and training and support for engagement. The UK’s National Institute of Health and Care Excellence identifies five prerequisites for success when undertaking community engagement:

- Taking account of lessons learned from existing community initiatives

- Investing in long-term initiatives

- Identifying the changes needed within the organisation to support community engagement

- Agreeing levels of engagement and power sharing between statutory and community organisations

- Building mutual trust and respect between statutory and community organisations

Contemporary issues

URBACT 4D Cities taps into an appetite for more transparency, accountability and choice in health, and a growing understanding that civil society has a major role in creating the conditions for good health. A number of contemporary issues around citizen involvement relate to this agenda, but I would like to highlight three. Firstly, notwithstanding the wide acceptance of the benefits of citizen involvement, health systems largely remain professionally-led and often fail to build on community assets or include people as equal partners. In the field of public health, despite strong evidence that social connections, citizen control and voice are related to inequities in health,2 participatory approaches are still not mainstreamed. A real shift is needed to make the rhetoric of citizen involvement a reality.

Secondly, our notions of what a community can be are continually being expanded. The development of virtual communities supported by web-based media opens up different platforms for people to participate and connect across traditional boundaries. At the same time, new barriers around digital exclusion are exposed.

Thirdly, greater involvement of civil society necessitates a change in emphasis from small scale community health projects towards health programmes capable of supporting broad community mobilisation. We have some UK examples, such as community health champions where 18,000 plus people have volunteered to promote health in their community, but such programmes are the exception rather than the rule. There are many opportunities for sharing learning within and between countries about how we scale up citizen involvement and change service cultures wholesale. In that way we can respond to the call to action presented by Health 2020, which advocates new partnerships and participatory governance to deliver health goals.

*Jane South is Professor of Healthy Communities at the Institute for Health and Wellbeing, Leeds Beckett University, UK. She was the Director of the Centre for Health Promotion Research from 2006-13 and is now on secondment as an expert advisor to Public Health England.