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.

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.

Plain English summaryWithin 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.AbstractBackground 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 ...

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.

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