Alicia Renedo

Patient and Public Involvement in Healthcare Quality Improvement: How organizations can help patients and professionals to collaborate

Abstract Citizens across the world are increasingly called upon to participate in healthcare improvement. It is often unclear how this can be made to work in practice. This 4-year ethnography of a UK healthcare improvement initiative showed that patients used elements of organizational culture as resources to help them collaborate with healthcare professionals. The four elements were: (1) organizational emphasis on non-hierarchical, multidisciplinary collaboration; (2) organizational staff ability to model desired behaviours of recognition and respect; (3) commitment to rapid action, including quick translation of research into practice; and (4) the constant data collection and reflection process facilitated by improvement methods.

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.

Expert knowledge, cognitive polyphasia and health: a study on social representations of homelessness among professionals working in the voluntary sector in London

This article develops a social representational approach to understanding expert knowledge and its relation to health. Research with homelessness professionals (HPs) working in the UK voluntary sector shows that expert definitions of homelessness can either undermine or enhance the health of the homeless. Guided by the concepts of social representations and cognitive polyphasia, the analysis reveals a contradictory field of knowledge, which reflects the struggle of professionals to sustain a humanizing approach and resist the pressures of statutory agendas. We conclude pointing to the need of recognizing the impact of professionals knowledge on the health and care policies for the homeless.

The co-production of what? Knowledge, values, and social relations in health care

“Co-production” is becoming an increasingly popular term in policymaking, governance, and research. While the shift from engagement and involvement to co-production in health care holds the promise of revolutionising health services and research, it is not always evident what counts as co-production: what is being produced, under what circumstances, and with what implications for participants. We discuss these questions and propose that co-production can be understood as an exploratory space and a generative process that leads to different, and sometimes unexpected, forms of knowledge, values, and social relations. By opening up this discussion, we hope to stimulate future debates on co-production as well as draw out ways of thinking differently about collaboration and participation in health care and research. Part of the title of this article is inspired by the book “The Social Construction of What?” by Ian Hacking (Cambridge, MA: Harvard University Press; 2000).

Understanding and measuring the effects of patient and public involvement: an ethnographic study

Abstract Background In the UK, involving patients and the public in health-care service improvement and research is a policy requirement. Yet, showing the effects of patient and public involvement (PPI) is complicated by an absence of clarity about what involvement or engagement actually is, or what successful PPI might look like. We examined the case of a UK public health-care improvement initiative (Collaborations for Leadership in Applied Health Research and Care for Northwest London [CLAHRC]) to investigate how PPI was put into practice. We focused on how patient and professional roles developed over time and drew lessons from this about key areas for future assessment of PPI effects. Methods We did a 4-year ethnographic study, using participant observation of PPI activities run by CLAHRC (160 h) and in-depth interviews (n=89), 45 with patient participants (ie, patients and service users involved in CLAHRC improvement projects) and 44 with health-care professionals involved in implementing PPI. Activities reported included monthly meetings in which teams of health-care professionals and patient participants met to work on health-care improvement projects, events run by CLAHRC to facilitate learning about quality improvement methods and PPI, and steering groups in which patients participated in organisation of these events or discussed the overall strategy of the CLAHRC programme. All interviews were audio recorded and transcribed. Findings were recorded in fieldnotes. We used a grounded theory approach that consisted of a process of systematic comparisons across the interview and fieldnote data to generate, review, and refine themes. This approach involved an iterative process of collecting and analysing data by which leads emerging from analysis led to new data collection. Findings At first, health professionals demanded evidence of PPI effects of the type typical in clinical practice, such as cost-effectiveness data, treating PPI as a discrete intervention to improve a specific health outcome. They often spoke about effect in linear terms, focusing on individual participants; for example, patient input leads to improved clinical knowledge, which in turn leads to better health outcomes. Even so, they also measured their own PPI success using indicators such as successful participant recruitment and retention or tangible non-health outputs (eg, leaflets codesigned with patients), rather than changes in health outcomes. Patients added complexity by acting outside the official remit of their participant role. For instance, they facilitated collaboration within and between clinical teams and engaged powerful decision makers to ensure interventions were sustained. Patients talked about their own contributions in collective and utilitarian terms: they were reluctant to attribute success to individuals, emphasising the role of the team. For them, effect meant timely (and rapid) implementation of incremental changes in health care, which were then sustained and improved upon through collaborative relationships between patients, clinicians, researchers, and others. Staff gradually focused more on creating environments conducive to patient collaboration, and less on calculating the effect of individual contributions as time went on. They increasingly described PPI success in terms of collaborative relationships between diverse patients and professionals, and acknowledged the importance of unpredictable positive effects of patient innovations. Interpretation The effect of PPI is not captured in simple quantification of PPI elements (eg, patients reached, outcome measures improved). To define and assess the effects of PPI, we should take patient voices into account, and track the dynamic social processes and networks through which PPI contributes to health-care improvement. We present a framework for future assessment of PPI effect: how, whether, and when patient input is integrated into projects; level of sustained and expanded collaborative relationships created via PPI; changes in working relationships between multidisciplinary professionals; presence of new patient-led projects; institutional investment in PPI; and patient engagement in service improvement and self-care. Funding This article presents independent research commissioned by the National Institute for Health Research (NIHR) under the CLAHRC programme for northwest London. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.

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.

Fertility regulation as identity maintenance: Understanding the social aspects of birth control.

We take a dialogical approach to exploring fertility regulation practices and show how they can maintain or express social identity. We identify three themes in educated Ghanaian women’s accounts of how they navigate conflicting social demands on their identity when trying to regulate fertility: secrecy and silence – hiding contraception use and avoiding talking about it; tolerating uncertainty – such as using unreliable but more socially acceptable contraception; and wanting to be fertile and protecting menses. Family planning programmes that fail to tackle such social-psychological obstacles to regulating fertility will risk reproducing social spaces where women struggle to claim their reproductive rights.

Responsive and Equitable Health Systems—Partnership on Non-Communicable Diseases (RESPOND) study: a mixed-methods, longitudinal, observational study on treatment seeking for hypertension in Malaysia and the Philippines

Introduction Hypertension is a leading contributor to the global burden of disease. While safe and effective treatment exists, blood pressure control is poor in many countries, often reflecting barriers at the levels of health systems and services as well as at the broader level of patients’ sociocultural contexts. This study examines how these interact to facilitate or hinder hypertension control, taking into account characteristics of service provision components and social contexts. Methods and analysis The study, set in Malaysia and the Philippines, builds on two systematic reviews of barriers to effective hypertension management. People with hypertension (pre-existing and newly diagnosed) will be identified in poor households in 24–30 communities per country. Quantitative and qualitative methods will be used to examine their experiences of and pathways into seeking and obtaining care. These include two waves of household surveys of 20–25 participants per community 12–18 months apart, microcosting exercises to assess the cost of illness (including costs due to health seeking activities and inability to work (5 per community)), preliminary and follow-up in-depth interviews and digital diaries with hypertensive adults over the course of a year (40 per country, employing an innovative mobile phone technology), focus group discussions with study participants and structured assessments of health facilities (including formal and informal providers). Ethics and dissemination Ethical approval has been granted by the Observational Research Ethics Committee at the London School of Hygiene and Tropical Medicine and the Research Ethics Boards at the Universiti Putra Malaysia and the University of the Philippines Manila. The project team will disseminate findings and engage with a wide range of stakeholders to promote uptake and impact. Alongside publications in high-impact journals, dissemination activities include a comprehensive stakeholder analysis, engagement with traditional and social media and ‘digital stories’ coproduced with research participants.