Publications by year
In Press
Gibson A, Boddy K, Maguire K, Britten N (In Press). Exploring the impact of providing evidence-based medicine training to service users. Research Involvement and Engagement, 1, 1-13.
Williams AJ, Menneer T, Sidana M, Walker T, Maguire K, Mueller M, Paterson C, Leyshon M, Leyshon C, Seymour E, et al (In Press). Fostering Engagement with Health and Housing Innovation: Development of Participant Personas in a Social Housing Cohort (Preprint).
Abstract:
Fostering Engagement with Health and Housing Innovation: Development of Participant Personas in a Social Housing Cohort (Preprint)
. BACKGROUND
. Personas, based on customer or population data, are widely used to inform design decisions in the commercial sector. The variety of methods available means that personas can be produced from projects of different types and scale.
.
.
. OBJECTIVE
. This study aims to experiment with the use of personas that bring together data from a survey, household air measurements and electricity usage sensors, and an interview within a research and innovation project, with the aim of supporting eHealth and eWell-being product, process, and service development through broadening the engagement with and understanding of the data about the local community.
.
.
. METHODS
. The project participants were social housing residents (adults only) living in central Cornwall, a rural unitary authority in the United Kingdom. A total of 329 households were recruited between September 2017 and November 2018, with 235 (71.4%) providing complete baseline survey data on demographics, socioeconomic position, household composition, home environment, technology ownership, pet ownership, smoking, social cohesion, volunteering, caring, mental well-being, physical and mental health–related quality of life, and activity. K-prototype cluster analysis was used to identify 8 clusters among the baseline survey responses. The sensor and interview data were subsequently analyzed by cluster and the insights from all 3 data sources were brought together to produce the personas, known as the Smartline Archetypes.
.
.
. RESULTS
. The Smartline Archetypes proved to be an engaging way of presenting data, accessible to a broader group of stakeholders than those who accessed the raw anonymized data, thereby providing a vehicle for greater research engagement, innovation, and impact.
.
.
. CONCLUSIONS
. Through the adoption of a tool widely used in practice, research projects could generate greater policy and practical impact, while also becoming more transparent and open to the public.
.
Abstract.
2021
Williams AJ, Menneer T, Sidana M, Walker T, Maguire K, Mueller M, Paterson C, Leyshon M, Leyshon C, Seymour E, et al (2021). Fostering Engagement with Health and Housing Innovation: Development of Participant Personas in a Social Housing Cohort.
JMIR Public Health and Surveillance,
7(2), e25037-e25037.
Abstract:
Fostering Engagement with Health and Housing Innovation: Development of Participant Personas in a Social Housing Cohort
. Background
. Personas, based on customer or population data, are widely used to inform design decisions in the commercial sector. The variety of methods available means that personas can be produced from projects of different types and scale.
.
.
. Objective
. This study aims to experiment with the use of personas that bring together data from a survey, household air measurements and electricity usage sensors, and an interview within a research and innovation project, with the aim of supporting eHealth and eWell-being product, process, and service development through broadening the engagement with and understanding of the data about the local community.
.
.
. Methods
. The project participants were social housing residents (adults only) living in central Cornwall, a rural unitary authority in the United Kingdom. A total of 329 households were recruited between September 2017 and November 2018, with 235 (71.4%) providing complete baseline survey data on demographics, socioeconomic position, household composition, home environment, technology ownership, pet ownership, smoking, social cohesion, volunteering, caring, mental well-being, physical and mental health–related quality of life, and activity. K-prototype cluster analysis was used to identify 8 clusters among the baseline survey responses. The sensor and interview data were subsequently analyzed by cluster and the insights from all 3 data sources were brought together to produce the personas, known as the Smartline Archetypes.
.
.
. Results
. The Smartline Archetypes proved to be an engaging way of presenting data, accessible to a broader group of stakeholders than those who accessed the raw anonymized data, thereby providing a vehicle for greater research engagement, innovation, and impact.
.
.
. Conclusions
. Through the adoption of a tool widely used in practice, research projects could generate greater policy and practical impact, while also becoming more transparent and open to the public.
.
Abstract.
2020
Morris C, Blake S, Stimson A, Borek A, Maguire K (2020). Resources for parents raising a disabled child in the UK. Paediatrics and Child Health (United Kingdom), 30(8), 303-305.
Williams AJ, Maguire K, Morrissey K, Taylor T, Wyatt K (2020). Social cohesion, mental wellbeing and health-related quality of life among a cohort of social housing residents in Cornwall: a cross sectional study.
BMC Public Health,
20(1).
Abstract:
Social cohesion, mental wellbeing and health-related quality of life among a cohort of social housing residents in Cornwall: a cross sectional study.
BACKGROUND: Research and policy have identified social cohesion as a potentially modifiable determinant of health and wellbeing that could contribute to more sustainable development. However, the function of social cohesion appears to vary between communities. The aim of this study was to analyse the levels of, and associations, between social cohesion, mental wellbeing, and physical and mental health-related quality of life among a cohort of social housing residents from low socioeconomic status communities in Cornwall, UK. Social housing is below market-rate rental accommodation made available to those in certain health or economic circumstances. These circumstances may impact on the form and function of social cohesion. METHODS: During recruitment, participants in the Smartline project completed the Short Warwick-Edinburgh Mental Wellbeing Scale, SF-12v2 and an eight item social cohesion scale. Cross sectional regression analyses of these data adjusted for gender, age, national identity, area socioeconomic status, rurality, education, employment, and household size were undertaken to address the study aim. RESULTS: Complete data were available from 305 (92.7%) participants in the Smartline project. Univariable analyses identified a significant association between social cohesion, mental wellbeing and mental health-related quality of life. Within fully adjusted multivariable models, social cohesion only remained significantly associated with mental wellbeing. Sensitivity analyses additionally adjusting for ethnicity and duration of residence, where there was greater missing data, did not alter the findings. CONCLUSIONS: Among a relatively homogeneous cohort, the reported level of social cohesion was only found to be significantly associated with higher mental wellbeing, not physical or mental health-related quality of life. The efforts made by social housing providers to offer social opportunities to all their residents regardless of individual physical or mental health state may support the development of a certain degree of social cohesion. Sense of control or safety in communities may be more critical to health than social cohesion. Additional observational research is needed before attempts are made to alter social cohesion to improve health.
Abstract.
Author URL.
2019
Maguire K, Britten N (2019). Participatory research in health care. In (Ed)
Qualitative Research in Health Care, 193-210.
Abstract:
Participatory research in health care
Abstract.
Maguire K, Garside R, Poland J, Fleming LE, Alcock I, Taylor T, Macintyre H, Lo Iacono G, Green A, Wheeler BW, et al (2019). Public involvement in research about environmental change and health: a case study.
Health,
23(2), 215-233.
Abstract:
Public involvement in research about environmental change and health: a case study.
Involving and engaging the public are crucial for effective prioritisation, dissemination and implementation of research about the complex interactions between environments and health. Involvement is also important to funders and policy makers who often see it as vital for building trust and justifying the investment of public money. In public health research, ‘the public’ can seem an amorphous target for researchers to engage with, and the short-term nature of research projects can be a challenge. Technocratic and pedagogical approaches have frequently met with resistance, so public involvement needs to be seen in the context of a history which includes contested truths, power inequalities and political activism. It is therefore vital for researchers and policy makers, as well as public contributors, to share best practice and to explore the challenges encountered in public involvement and engagement. This article presents a theoretically informed case study of the contributions made by the Health and Environment Public Engagement Group to the work of the National Institute for Health Research (NIHR) Health Protection Research Unit in Environmental Change and Health (HPRU-ECH). We describe how Health and Environment Public Engagement Group has provided researchers in the HPRU-ECH with a vehicle to support access to public views on multiple aspects of the research work across three workshops, discussion of ongoing research issues at meetings and supporting dissemination to local government partners, as well as public representation on the HPRU-ECH Advisory Board. We conclude that institutional support for standing public involvement groups can provide conduits for connecting public with policy makers and academic institutions. This can enable public involvement and engagement, which would be difficult, if not impossible, to achieve in individual short-term and unconnected research projects.
Abstract.
2018
Maguire K, Britten N (2018). 'You're there because you are unprofessional': patient and public involvement as liminal knowledge spaces.
Sociol Health Illn,
40(3), 463-477.
Abstract:
'You're there because you are unprofessional': patient and public involvement as liminal knowledge spaces.
Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service-user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in-between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces.
Abstract.
Author URL.
Fleming LE, Leonardi GS, White MP, Medlock J, Alcock I, Macintyre HL, Maguire K, Nichols G, Wheeler BW, Morris G, et al (2018). Beyond climate change and health: Integrating broader environmental change and natural environments for public health protection and promotion in the UK.
Atmosphere,
9(7).
Abstract:
Beyond climate change and health: Integrating broader environmental change and natural environments for public health protection and promotion in the UK
Increasingly, the potential short and long-term impacts of climate change on human health and wellbeing are being demonstrated. However, other environmental change factors, particularly relating to the natural environment, need to be taken into account to understand the totality of these interactions and impacts. This paper provides an overview of ongoing research in the Health Protection Research Unit (HPRU) on Environmental Change and Health, particularly around the positive and negative effects of the natural environment on human health and well-being and primarily within a UK context. In addition to exploring the potential increasing risks to human health from water-borne and vector-borne diseases and from exposure to aeroallergens such as pollen, this paper also demonstrates the potential opportunities and co-benefits to human physical and mental health from interacting with the natural environment. The involvement of a Health and Environment Public Engagement (HEPE) group as a public forum of "critical friends" has proven useful for prioritising and exploring some of this research; such public involvement is essential to minimise public health risks and maximise the benefits which are identified from this research into environmental change and human health. Research gaps are identified and recommendations made for future research into the risks, benefits and potential opportunities of climate and other environmental change on human and planetary health.
Abstract.
2017
Maguire K (2017). Talking About Research Using Games, Models, Maps, and Stories.
Abstract:
Talking About Research Using Games, Models, Maps, and Stories
This case study outlines how games, models, maps, and stories can be used as tools to support communication in research. It
describes the use of these methods to involve patients and members of the public in the prioritization and application of social
theories in data analysis as part of a qualitative study about patient and public involvement in health research and care. The case
study also summarizes the context and purposes of patient and public involvement in health research, giving some examples of
the roles and activities this can include. It goes on to describe how the creative methods used in this study can also support other
aspects of research including data collection and the dissemination of research findings. It further suggests that they are a
valuable way of engaging people and enabling different sorts of conversations to take place, between researchers and research
participants, researchers and the public, and also between researchers from different academic disciplines.
Abstract.
Web link.
Maguire K, Britten N (2017). “How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable. Social Science & Medicine, 183, 62-69.
2016
Britten N, Maguire K (2016). Lay knowledge, social movements and the use of medicines: Personal reflections.
Health (London),
20(2), 77-93.
Abstract:
Lay knowledge, social movements and the use of medicines: Personal reflections.
This article consists of two personal reflections about the changing status of lay knowledge over the last 20 years. The first reflection is by Nicky Britten from the perspective of a sociologist working in medical schools whose interest in this topic was motivated by my own personal experience of health care and of teaching general practitioners. Starting with the problematic deficit model of 'ignorant patients', I trace the literature on patient-centredness, shared decision-making, lay knowledge, public involvement in research and social movements. Looking at medicines use in particular, I deplore the continued hegemony of the concept of compliance in the face of extensively documented problems with the licensing, regulation, prescribing and monitoring of medicines. I argue that lay knowledge is now taken more seriously, not so much because of advocacy by clinicians and academics, but because of social movements and social action. We may have moved from 'anecdotes' to 'lived experience' but there is still a way to go, particularly when it comes to medicines use. I end with a possible future scenario. The second reflection is by Kath Maguire and is a response from the perspective of someone who came to work in this field with the express purpose of improving engagement with lay knowledge. It questions my own 'layness' and explores the issues raised by Nicky Britten using the lens of lived experience. Finally, it questions the paradigm of social movements and highlights the importance of developing different ways of listening.
Abstract.
Author URL.
Morris C, Blake S, Stimson A, Borek A, Maguire K (2016). Resources for parents raising a disabled child in the UK. Paediatrics and Child Health (United Kingdom)
2015
Gibson A, Boddy K, Maguire K, Britten N (2015). Exploring the impact of providing evidence-based medicine training to service users. Research Involvement and Engagement, 1(1).
2014
Maguire K (2014). Public and Patient Involvement in Theory and in Practice.
Abstract:
Public and Patient Involvement in Theory and in Practice
There is increasing interest in the theoretical underpinning of involving patients and the public, in health research and care, as coproduces and partners.
Conducted by a participant researcher, this study theorises involvement from the perspectives of patients and members of the public. It asks: ‘What motivates and sustains patient and public involvement from the perspective of lay participants?’
Beginning from an ethical position that sees knowledge as a social product, it argues that involvement can demonstrate the public ownership of knowledge.
The study uses survey data and 31 semi structured interviews, with participants from across England, covering a wide range of involvement roles and activities. It explores what inspires and what discourages involvement and how involvement impacts on participants’ sense of identity. Theoretical approaches are interrogated asking: what would involvement look like from this perspective and how would a participant’s description of involvement be shaped by this approach? These ideas
were translated into games and stories, prompting further discussions with both public involvement participants and academics.
Building on the model of public involvement ‘knowledge spaces,’ participants’ stories are used to describe these as liminal, complex and often paradoxical spaces. Rather than the sharply defined cube, described by Gibson, Britten and Lynch, these spaces are more like bubbles, morphing and contorting in reaction to fluctuating external and internal pressures. Knowledge spaces are politically, economically and culturally situated. Within each space different modes of action, rules, and theoretical approaches may coexist. They may have multiple instrumental purposes, while using expressive modes of action. Different involvement opportunities may call for similar skills and abilities. In acting as weak
publics they may empower participation in campaigning and decision making. Conservation and change are not only matters of how organisations respond to involvement, individual participants may experience knowledge spaces as arenas through which their sense of self is maintained, transformed or reconstructed, where they connect their personal narratives to the creation of human knowledge.
The complexity of these spaces, the multiplicity of external pressures and
participant orientations, makes it all the more important for participants, (clinical, academic and lay) to reflect upon and share their own. motivations and values. This means examining drivers and pre-existing theoretical baggage to ensure that none of these obscure the appreciation of and engagement with alternate views.The pursuit of strategic aims through these spaces requires communicative action.
Abstract.
Maguire K, Jones E, Williams-Yesson B, Stevens S (2014). Valuing patient and public involvement in research.
Nurs Times,
110(45), 22-23.
Abstract:
Valuing patient and public involvement in research.
Patient and public involvement is now mandatory in funding applications for most health sciences research. This article offers a snapshot of views from patients and the public on their role in the research process.
Abstract.
Author URL.
2006
Maguire K (2006). Active Governance: the value added by community involvement in governance. Joseph Rowntree Foundation, York, Joseph Rowntree Foundation.
