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.

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.

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.

'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.

"How can anybody be representative for those kind of people?" Forms of patient representation in health research, and why it is always contestable.

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of 'representation' and the ways the concept is used by people serving as 'patient' or 'lay' representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.

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.

Exploring the impact of providing evidence-based medicine training to service users.

PLAIN ENGLISH SUMMARY: Within health services research in the UK, there has been growing interest in evidence-based medicine (EBM) and patient and public involvement (PPI) in research. These two movements have a common goal of improving the quality and transparency of clinical decision making. So far, there has been relatively little discussion about how these two movements might relate to each other, despite their common concern. Indeed, some in the PPI movement have expressed doubts about the implications of EBM for PPI because they worry that its emphasis on evidence from clinical trials marginalises the importance of a patient's individual experiences in clinical decision making. The purpose of this paper is to examine the potential for EBM and PPI to complement one another. We analysed the feedback of 10 members of the Peninsula Public Involvement Group (PenPIG) who attended EBM workshops. These workshops trained people in the basics of EBM and were primarily attended by health professionals. We used thematic analysis, a qualitative data analysis method, to explore the responses. We found that participation in the workshops appears to have increased the ability and confidence of members of the public to actively participate as both producers and consumers of research evidence. We conclude that there is an untapped potential for EBM and PPI to complement one another in their shared desire to improve the quality and transparency of clinical decision making. ABSTRACT: Background Within the UK, health services research in the 1990s was marked by growing interest in evidence-based medicine (EBM) and in the potential of patient and public involvement (PPI) in research. However, there has been relatively little discussion of how these two developments might relate to each other, despite their common concern to improve the quality and transparency of clinical decision making. Indeed, some in the user involvement movement have expressed doubts about the implications of EBM for PPI. The purpose of this paper is to examine the potential for EBM and PPI to complement one another. Methods We used a case study design. Fifteen EBM workshops, involving PPI members, were conducted between June 2010 and December 2014. All 13 lay participants, who attended the first five workshops, were asked to fill in a standard feedback proforma designed by a member of the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (PenCLAHRC) Public Involvement Group (PenPIG). Ten responses were received, and these were analysed thematically. Results Four themes emerged from the thematic analysis: research knowledge, research skills, shared clinical decision making and learning environment. Participation in the workshops appears to have increased the ability and confidence of members of the public to actively participate as both producers and consumers of research evidence. Conclusions There is an untapped potential for EBM and PPI to complement one another in their shared desire to improve the quality and transparency of clinical decision making.

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.