Our Beacon Projects
Our academics are leading a number of Beacon Projects that exemplify the way in which the Centre aims to create and sustain cultures and environments of health through transdisciplinary engaged research.
How is evidence constituted and mobilised in health decision-making in a ‘post-truth’ world?
This project uncovers and explores the constitution and mobilisation of medical evidence in health decision-making in the twentieth century, while undertaking an analysis of the contemporary use of medical facts in a so-called ‘post-truth’ world.
The project will track the emergence of evidence-based medicine and the use of RCTs as the gold standard, alongside the challenges to this model from qualitative and more narrative-based approaches. This account will be situated within a longer history of medicine; it will also be read alongside a twentieth-century history of ideas that pays attention to the linguistic turn, the turn to narrative, and the emergence of what Jean-Francois Lyotard named an ‘incredulity towards metanarratives’ that gained traction in the humanities and social sciences at precisely the moment that evidence-based medicine was becoming discursively and institutionally powerful. By placing the use of quantitative and qualitative evidence in health decision-making within a broader intellectual history, including the two cultures debate of the 1960s, the theory wars of the 1980s, the movement from matters of fact to matters of concern, and the more recent emergence of so-called ‘post-truth’ in public discourse, this project will enable an analysis of which aspects of evidence, as it is currently constituted, need to be defended, and which aspects can valuably be complicated and transformed to enable the emergence of ‘healthy publics’.
Access to digital media and big data analytics have ensured that variously constituted (and constituting) publics are exposed to and mobilise increasing amounts of information. But information cannot be transformed into credible evidence, or into facts that are legible as such, without modes of interpretation that use affective investments, narratives, generic conventions and particular patterns to render data into a meaningful shape. Changes in the ways in which people access information have transformed narratives and genres of evidence, however, destabilising the consistency of discourses of fact and fiction and the distinction between the quantitative and the qualitative in ways that sometimes enable richer understandings of the complexity of actions and relations, but sometimes weaponise uncertainty. Current conditions thus render particularly explicit the ways in which the cognitive and affective experiences folded into health decision-making necessarily rely on complex patterns rather than particular points of evidence. This project will survey shifts in the affects, investments and genres that are essential to the constitution and mobilisation of facts and evidence in health decision-making at the macro level in order to determine trends in the relationship between Western biomedicine and discourses concerned with truth and efficacy. It will also use carefully developed case studies to track the complex and multiple connections that are assembled in and between publics and the medical evidence they both use and by which they are used. This aspect of the research will seek to engage publics to help determine the research questions and sites, and to take account of the patterns of affects and investments that go into a particular set of health decision-making practices.
The final part of the project will engage with publics to co-create knowledge about how medical evidence, understood as a complex assemblage and as working through particular genres and patterns that collapse the boundaries between qualitative and quantitative, might be represented, disseminated and used. Researchers and publics will use the Centre to work with artists on innovative ways to present the multiple and sticky elements that come together to form evidence in ways that might facilitate the emergence of healthy publics.
How can we rethink institutional care for people with dementia?
A focus on transforming care is an important cross-cutting theme for WCCEH. Giving and receiving care is a central feature of positive family and close relationships, and is embedded in many aspects of day-to-day activities and interactions. The experience of both giving and receiving care contributes to sustaining well-being across the life-course, enabling successful negotiation of crises and transitions and supporting resilience under adverse life circumstances. The values, attitudes and expectations that underpin care in this broad sense may sometimes conflict with or challenge needs for or expectations of autonomy, especially where self-management and self-determination are increasingly emphasised as important to maintaining health and well-being. Understanding and reframing the concept of care and its expression and practice in a range of contexts is centrally relevant to the overarching aims of WCCEH.
Informal exchanges of care are an integral part of everyday life, and are often connected with positive feelings of love and concern, or motivated by altruism or a sense of responsibility. However, where needs for care outweigh what can be given informally, individuals and families may need to draw on the institution of care and, in some cases, institutional care. ‘Care’ in this sense takes on different meanings and encompasses different motivations, for example where certain jobs or organisations are considered to hold a ‘duty of care’ or where the focus is on ‘safeguarding’. Contact with the institution of care is something we all experience across the life-course in contexts such as education or health services, and increasingly in many activities and social contexts that involve contact with groups perceived as potentially vulnerable, such as children. In contrast, receiving or depending on ‘formal’ care is something experienced by the most vulnerable and disadvantaged groups in society. In this sense ‘care’ is a commodity ‘delivered’ by paid care workers, either in the community or in institutions, and its availability and nature is shaped by economic and political imperatives.
The nature and quality of institutional care is of particular concern. In this project, we will operationalise our interest in transforming care across the life-course by focusing on one aspect of care, institutional care, and addressing this issue in relation to one stage in the life-course, later life. We propose a transformational approach that will allow us to rethink institutional care for older people with dementia and identify new models that are acceptable, feasible and potentially sustainable.
The forms taken by institutional care change over time as values and attitudes change. In the UK and many other western countries here have been significant shifts, such as the move from the old asylums to smaller, community-based units. What seem like improvements may, however, fail to deliver fundamental changes in practice and may even mask a grimmer reality where individuals and groups receiving institutional care remain vulnerable to inappropriate practices, abuse and neglect. Institutional ‘care’ may be at best ‘care-less’ and at worst neglectful or cruel.
This situation disproportionately affects older people with dementia. Whereas in the UK and similar societies institutional care has become an unacceptable option for many groups, it remains a common experience for older people with dementia, and especially those with more advanced dementia. In the UK, the majority of older people in care homes have dementia, and most of them have advanced dementia. These are some of the most vulnerable individuals in our society, who often lack capacity to be involved in key decisions about their lives. They have few opportunities to exercise autonomy, their needs and wishes may not be recognised, and even basic physical problems such as pain may be misinterpreted as ‘challenging behaviour’. It takes skill and understanding on the part of staff to elicit wishes and preferences or to correctly understand the needs that people are communicating, but staff in care homes are unvalued and poorly-paid and receive little support or effective training.
We have seen improvements in care practice in recent decades, thanks to significant changes in our understanding of dementia. In the late 1980s professionals still spoke of dementia as a ‘living death’ and focused primarily on the needs of family members. In the 1990s Kitwood’s seminal work proposed a reconsideration of dementia, emphasised that ‘the person comes first’, and introduced the concept of person-centred care. More recently policy and campaigning has focused on the potential for ‘living well’ with dementia (e.g. the 2009 national dementia strategy for England), on the rights and citizenship of people with dementia, and on maintaining the dignity and personhood of those with advanced dementia.
Nevertheless, significant limitations remain and perceptions of institutional care are largely negative. Many older people, and indeed probably most people of any age, say they would strongly prefer not to move into a care home, but when care at home becomes impractical there are no other choices available. Even with improvements in practice, care homes are not desirable places.
Furthermore, In the UK, the care system is in crisis. Quality of care is variable and too often inadequate, and examples of good practice are patchy. Local authorities have largely divested themselves of responsibility for providing services, private providers cannot run services profitably and risk collapse, people with dementia and their families are faced with exorbitant fees, self-funders subsidise the inadequate amounts contributed by local authorities to cover the costs of those they are obliged to support, and having dementia is not considered sufficient grounds for eligibility for NHS continuing healthcare funding. Attempts to provide a fairer, more sustainable model, such as the recommendations outlined in the 2011 Dilnot report, have not been translated into legislation or policy.
Research in applied health and social care typically focuses on an incremental approach to addressing the challenges of providing institutional care, for example by identifying examples of good practice (e.g. providing more interesting activities or environments within care homes) and trying to implement these more widely. While in itself very valuable, this is likely to yield limited benefits due to patchy, inconsistent or inadequate implementation, and will certainly fail to address the underlying problem of an unacceptable and unsustainable model of care provision. A more radical solution is needed in order to identify new models that are acceptable, feasible and potentially sustainable, and that improve the experience of care for people with dementia.
In this project we will consider why institutional care for people with dementia in the UK takes its current forms, and examine the potential for different forms of care. We will fully involve people with dementia, family carers of people with dementia, members of the public and other stakeholders in the process of developing the project plan, synthesising the information gained, drawing out the implications for rethinking institutional care, considering how the insights gained can influence policy and practice in care provision, and supporting dissemination, including dissemination in accessible formats. This will be achieved through a series of workshops and events held at appropriate stages in the project. Workshops for people with dementia and carers will be arranged in collaboration with Innovations in Dementia and Alzheimer’s Society, and workshops for older people not affected by dementia will be arranged in collaboration with Age UK. Workshops for other stakeholders will be arranged through existing networks and links with relevant organisations. At the end of the project we aim to have outlined new approaches that could constitute a step-change in how care is organised and provided, and to have engaged partner organisations in plans to take these forward. We will be able to feed the outcomes back into the cross-cutting theme of transforming care to provide synergy with other WCCEH activities under this theme.
Our overarching research question is: how can we rethink institutional care for people with dementia?
Understanding how transformative community engagement creates the conditions for health
Overall aim of the research: This research proposal seeks to understand how transformative engagement which alters the nature and qualities of relations between residents and service providers in low income neighbourhoods can lead to emergent health and wellbeing outcomes.
Background: Non communicable diseases represent a global public health challenge, and are a driver of health inequalities. Yet many programmes aimed at improving the health of the population inadvertently exacerbate rather than ameliorate health inequalities. Connecting Communities [C2] is a learning programme and implementation framework that seeks to create the conditions for health and wellbeing in economically disadvantaged communities. C2 was initially designed and developed by researchers and healthcare practitioners and refined in partnership with community residents and service providers (including housing, health, the police, fire services, housing and local government). The C2 approach responds to the senses of isolation, fragmentation and abandonment experienced by people in very low income communities, and seeks to alter the nature and quality of relations within communities, as well as between communities and service-providers, in order to create the conditions for potentially transformational change. Complexity theory is the underpinning theoretical framework for the C2.
Unlike most traditional public health programmes, C2 does not start with a pre-identified problem and a predetermined set of activities to address the problem. Rather, local ‘problems’ affecting health are co-identified through extensive engagement with communities, and the partnerships which are created on the basis of this process support emergent and transformative outcomes. (Appendix 1 shows the C2 framework which centres on understanding the social and cultural context of people’s lives to identify barriers to health). It can therefore be argued that the engagement processes within C2 constitute the intervention, and the emergent partnerships between residents and service providers are a sustainable means of delivering services in response to local issues. For example, a housing renovation programme led to increases in educational attainment and employment in the area. A 70% reduction in children on the at risk register was reported and a co-created police response to antisocial youth behaviour (involving dance workshops with young people) resulted in very large reductions in truancy and improved health outcomes including a 25% reduction in asthma rates in its first two years. Both partnerships are still ongoing. There are over 20 C2 partnerships across the UK and five partnerships in England have expressed the desire to create regional hubs to deliver C2 in their locality.
Research area: A recent series of NICE reviews which sought to understand the use and effectiveness of community engagement as a strategy to improve health, mapping current practice and evidence for community engagement approaches in the UK. The reviews highlighted the need to understand ‘whether successful community engagement [as a standalone approach] can improve health and wellbeing.’ This proposed WCCEH Project will explore whether and how transformative engagement can lead to better health in economically disadvantaged neighbourhoods. Working with C2 partnerships this research will also respond to the C2 partnerships’ own aim to explore ways of developing regional delivery mechanisms for C2 and develop an evidence base for this new approach.
Methods: The project brings together the C2 programme and partnerships with an engaged, transdisciplinary, research approach to understanding how altering the nature and qualities of relations can support health and well-being. Working with the C2 partnerships, two further neighbourhoods that wish to implement the C2 approach will be identified. [Initial discussions with C2 partnerships suggest that these will be in Stoke-on Trent and Thanet]. With the existing C2 partnership in each site we will identify, and provide support for, community-based researchers to work in these neighbourhoods to capture qualitative and quantitative evidence of connectivity and its relation to health and wellbeing. Using a combination of ethnographic and a community-informed, co-created, social network mapping approach we will seek to understand how the nature of relations changes during the C2 implementation process and whether this is associated with a change in wellbeing.
Engaged research approach: A repeated theme expressed by communities that have suffered social and economic decline is that of loss – loss of community spirit, loss of jobs, loss of local services, and loss of community spaces. Similarly, residents talk of feeling isolated from other residents, and abandoned by service providers. Loss and abandonment serve as key indicators of communities in decline, of communities suffering from “ill-health”. It is therefore striking that publics that have been engaged in academic research frequently talk of being abandoned by researchers when periods of funding come to an end, of feeling a sense of loss after being left behind by “drive-by” academics. A major objective of this project will be to build an authentic community-led approach, enabling communities to come to the fore in the research in order to co-identify issues and questions specific to their own community and to co-create possible solutions with service providers. Furthermore this will support the creation of an evidence base that the Partnerships can use to demonstrate what the C2 approach has transformed, as well as how and why these changes have come about.
Towards a framework of transferability: A further key challenge facing engaged research initiatives is that the very conditions for their potential success – namely, the development of strong local relations alongside the co-creation of a site-specific receptive context for the research collaboration – appear to militate against the possibility of translating successful engaged research initiatives to other sites. Indeed, standard models of evidence and evaluation aimed at supporting transferability and scalability appear to depend on the bracketing of context and local relations. This proposed research will develop a radically different set of principles and practices for translation and transfer, principles which embody the delivery of the work in specific sites and which are informed by the theoretical grounding of the work as a whole. For this work, the conditions of transferability are constituted by the narratives that the communities develop about their own experiences of change, by the direct experiences of the local settings which C2 provides, and which have been identified as the key for the development of the new regional learning hubs, and by the trust that is founded in collaborating with communities that have “done it for themselves”.
Transforming engagement: This project aims to become a beacon for “transforming engagement” in two main ways. First, by embodying the ethos and practices of engaged research, it will seek to show whether and how community engagement can itself be healthful. The participatory approach to collecting narratives and representing relationality within the neighbourhoods will enable us to demonstrate how engagement creates the conditions for community connectivity, and how community connectivity is in turn a condition for health. Second, the work will show how research projects can be genuinely co-designed and co-delivered by communities in partnership with academics. In particular, this project is responding to a community-identified vision of work that is being led and delivered within new neighbourhoods by the C2 partnerships. This is a radically new model of working, and it is founded in our learning from C2 that the conditions for transformative change for health are created through community engagement led in partnership with communities themselves.