Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement.

BACKGROUND: Understanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of 'quality improvement' when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services. METHODS: We used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach. RESULTS: When patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients' rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions. CONCLUSIONS: When including patient voices in measuring and defining 'quality', governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care

Effects of community participation on improving uptake of skilled care for maternal and newborn health: a systematic review.

BACKGROUND: Despite a broad consensus that communities should be actively involved in improving their own health, evidence for the effect of community participation on specific health outcomes is limited. We examine the effectiveness of community participation interventions in maternal and newborn health, asking: did participation improve outcomes? We also look at how the impact of community participation has been assessed, particularly through randomised controlled trials, and make recommendations for future research. We highlight the importance of qualitative investigation, suggesting key areas for qualitative data reporting alongside quantitative work. METHODS AND FINDINGS: Systematic review of published and 'grey' literature from 1990. We searched 11 databases, and followed up secondary references. Main outcome measures were the use of skilled care before/during/after birth and maternal/newborn mortality/morbidity. We included qualitative and quantitative studies from any country, and used a community participation theoretical framework to analyse the data. We found 10 interventions. Community participation had largely positive impacts on maternal/newborn health as part of a package of interventions, although not necessarily on uptake of skilled care. Interventions improving mortality or use of skilled care raised awareness, encouraged dialogue and involved communities in designing solutions-but so did those showing no effect. DISCUSSION: There are few high-quality, quantitative studies. We also lack information about why participation interventions do/do not succeed - an area of obvious interest for programme designers. Qualitative investigation can help fill this information gap and should be at the heart of future quantitative research examining participation interventions - in maternal/newborn health, and more widely. This review illustrates the need for qualitative investigation alongside RCTs and other quantitative studies to understand complex interventions in context, describe predicted and unforeseen impacts, assess potential for generalisability, and capture the less easily measurable social/political effects of encouraging participation

Spaces for Citizen Involvement in Healthcare: An Ethnographic Study.

This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens' actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: 'plotting', 'transient combination' and 'interconnecting'. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants' acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare

'Slow co-production’ for deeper patient involvement in health care

"Slow co-production", achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and public involvement and engagement

Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement

This article investigates how healthcare professionals articulate the relationship between patient experience and ‘evidence’, creating hybrid forms of knowledge. We propose a Bakhtinian dialogical framework to theorise this process. Drawing on ethnographic work from patient involvement initiatives in England, we show how patient experiences are re-articulated by professionals who add their own intentions and accents in a dialogical process which incorporates diverse forms of knowledge and the conflicting demands of healthcare services. In this process, patient experiences become useful epistemic commodities, helping professionals to respond to workplace pressures by abstracting experiences from patients’ biographies, instrumentalising experiences and privileging ‘disembodied’ forms of involvement. Understanding knowledge as relational and hybrid helps move beyond the assumption that there is a clear dichotomy between ‘objective science’ and ‘subjective experience’. This article illuminates how new knowledge is produced when professionals engage with ‘lay’ patient knowledge, and helps inform the sociology of knowledge production more widely. </jats:p

Social representations and homelessness: a study on the construction of expert knowledge.

In this thesis I develop a social representational approach to understanding expert knowledge on homelessness. I relate the concept of cognitive polyphasia with Bakhtin's views on the polyphony of the person, and Herman and Kempen's concept of the dialogical self. I link dialogical epistemology and ontology to show that, (i) polyphony and polyphasia of self and knowledge are two sides of the same coin, and (ii) the inner plurality of the person is grounded in the multiple self-other relationships within which identity and knowledge are co-constituted and where different ideas and practices clash and compete. I show that our ability to position ourselves in relation to the knowledge of others explains how the meanings, practices and identities that co-exist within individuals and groups are put to use, enabling us to function in multiple relationships and contexts. The research involved a multidimensional approach comprising: (1.) narrative interviews and focus groups with homelessness professionals (HPs) working in the UK voluntary sector and (2.) participative observation at conferences, and in a voluntary agency. The research showed that homelessness is a contested and contradictory notion. Expert representational fields are simultaneously, identity and knowledge struggles, sharply characterized by cognitive polyphasia, whose contents and dynamics are drawn from the dialogues and battles between the voluntary and the statutory sector and the public at large. I conclude by suggesting that identity and knowledge are inseparable from both the multiple relationships in which they develop and from processes of self-other positioning

Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions.

Pain communication in healthcare is challenging. We examine use of pain scales to communicate pain severity via a case study of people with sickle cell disorder (SCD). We show how pain communication involves complex social interactions between patients, healthcare professionals and significant others - none of which are included in pain ratings. Failure to account for relational aspects of pain may cause problems for any patient. For SCD, mutual distrust shapes pain communication, further complicating clinical assessments. Moreover, SCD pain is particularly severe, making ratings hard to interpret compared with ratings from non-SCD patients, potentially exacerbating problems in managing pain relief

Reimagining authorship guidelines to promote equity in co-produced academic collaborations.

Authorship of academic papers is a currency that can bring career advantages in academia and other industries. How authorship should be decided is not always clear, particularly in co-produced research with non-academic collaborators, for which existing authorship guidelines are largely silent. In this paper, we critically reflect on what constitutes written authorship in the context of co-produced health research. We present examples from our own work to illustrate the argument we make, including publishing a co-authored paper with non-academic partners. We consider questions of what constitutes authorship and how it is mutually understood. We discuss some of the opportunities and limits to participation and how these might translate into academic authorship as a collaborative research output. Finally, we explore the potential of authorship guidelines as a resource for critical reflection on what we mean by co-produced work and how we recognise contributions to global health research. We suggest that authorship guidelines should be adapted to encourage attribution of co-produced research to include non-academic as well as academic collaborators, and we provide a draft guideline for how this might be done

‘Slow co-production’ for deeper patient involvement in health care

"Slow co-production”, achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and public involvement and engagement