A sociology of public responses to hospital change and closure.

The "problem" of public resistance to hospital closure is a recurring trope in health policy debates around the world. Recent papers have argued that when it comes to major change to hospitals, "the public" cannot be persuaded by clinical evidence, and that mechanisms of public involvement are ill-equipped to reconcile opposition with management desire for radical change. This paper presents data from in-depth qualitative case studies of three hospital change processes in Scotland's National Health Service, including interviews with 44 members of the public. Informed by sociological accounts of both hospitals and publics as heterogeneous, shifting entities, I explore how hospitals play meaningful roles within their communities. I identify community responses to change proposals which go beyond simple opposition, including evading, engaging with and acquiescing to changes. Explicating both hospitals and the publics they serve as complex social phenomena strengthens the case for policy and practice to prioritise dialogic processes of engagement. It also demonstrates the continuing value of careful, empirical research into public perspectives on contentious healthcare issues in the context of everyday life.

Exploring the neglected and hidden dimensions of large-scale healthcare change.

Forms of large-scale change, such as the regiona l re-distribution of clinical services, are an enduring reform orthodoxy in health systems of high-income countries. The topic is of relevance and importance to medical sociology because of the way that large-scale change significantly disrupts and transforms therapeutic landscapes, relationships and practices. In this paper we review the literature on large-scale change. We find that the literature is dominated by competing forms of knowledge, such as health services research, and show how sociology can contribute new and critical perspectives and insights on what is for many people a troubling issue.

Citizen participation in health services co-production: a roadmap for navigating participation types and outcomes.

Primary healthcare managers are required to include citizens in service co-design and co-production. Health policy guidance appears deceptively simple and largely outlines how people could participate in a range of health services activities. Policy tends to neglect outcomes assessment, and a multidisciplinary academic literature corpus is large and complex to navigate for practical, time-poor managers. In this paper, we set out to provide a summary 'map' of key concepts in participation to assist managers in aligning participants, activities, expected outcomes and outcome indicators, and to consider contextual factors that could affect participation processes and outcomes. The intention is a practical tool for planning and evaluation of participation. The map is built drawing on policy guidance, literature and authors' experiences of implementing and researching health services participation.

Power to the people? An international review of the democratizing effects of direct elections to healthcare organizations.

Ensuring that publicly funded health systems are democratically accountable is an enduring challenge in policy and practice. One strategy for enhancing public officials' accountability is to elect members of the public to oversee their performance. Several countries have experimented with direct elections to healthcare organizations. The most directly comparable examples involve some Canadian regional health authorities, New Zealand district health boards, foundation trusts in England and health boards in Scotland. We propose three aspects of the process by which the democratizing effects of elections should be judged: authorization, accountability and influence. Evidence from these countries suggests that the democratization of health systems is a complex task, which cannot be completed simply by introducing elections. Copyright © 2015 John Wiley & Sons, Ltd.

Beyond NIMBYs and NOOMBYs: what can wind farm controversies teach us about public involvement in hospital closures?

BACKGROUND: Many policymakers, researchers and commentators argue that hospital closures are necessary as health systems adapt to new technological and financial contexts, and as population health needs in developed countries shift. However closures are often unpopular with local communities. Previous research has characterised public opposition as an obstacle to change. Public opposition to the siting of wind farms, often described as NIMBYism (Not In My Back Yard), is a useful comparator issue to the perceived NOOMBYism (Not Out Of My Back Yard) of hospital closure protestors. DISCUSSION: The analysis of public attitudes to wind farms has moved from a fairly crude characterisation of the 'attitude-behaviour gap' between publics who support the idea of wind energy, but oppose local wind farms, to empirical, often qualitative, studies of public perspectives. These have emphasised the complexity of public attitudes, and revealed some of the 'rational' concerns which lie beneath protests. Research has also explored processes of community engagement within the wind farm decision-making process, and the crucial role of trust between communities, authorities, and developers. Drawing on what has been learnt from studies of opposition to wind farms, we suggest a range of questions and approaches to explore public perspectives on hospital closure more thoroughly. Understanding the range of public responses to service change is an important first step in resolving the practical dilemma of effecting health system transformation in a democratic fashion.

Evaluating participant experiences of Community Panels to scrutinise policy modelling for health inequalities: the SIPHER Consortium.

Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences involving members of the public in the SIPHER Consortium, a data-intensive policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. We focus on evaluating people's experiences as part of Community Panels for SIPHER. Key issues familiar from general public involvement efforts include practical details, careful facilitation of meetings, and payment for participants. We also describe some of the more particular learning around how to communicate technical research to non-academic audiences, in order to enable public scrutiny of research decisions. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and properly resourced.

Actively involving members of the public is less common in 'data-intensive health research' (health research which does not create new data but focuses on analysing big existing datasets of statistics) than in conventional health research. 'Computational policy modelling' is an example of data-intensive health research where public involvement is not yet standard practice. This article describes our experiences involving members of the public in the SIPHER Consortium, a policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. This paper focuses on evaluating people's experiences as part of Community Panels for SIPHER. We brought together people with lived experience of health inequalities into three Community Panels, and we met for half a day 3-4 times a year to discuss and give feedback on the research. At first, it was difficult for Panel members to understand the research. Researchers had to try harder to avoid jargon, explain their work in plain English, and focus on the impact of the research in the 'real world'. Both the researchers and the Panel members learned how to communicate better over repeated meetings. Over time, we managed to have meaningful discussion of the choices researchers were making, so Panels could see their impact on the research. It was important that details of the meetings ­ planning meetings carefully so everyone feels welcome and valued, providing support with digital technology, financially rewarding people for their time ­ were taken seriously. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and takes time and money to get right.

Postpartum Treatment for Chronic Hepatitis C Virus Among People With Opioid Use Disorder: A Prospective Pilot Clinical Trial.

OBJECTIVE: The objective of this study was to evaluate the feasibility and acceptability of postpartum hepatitis C virus (HCV) treatment integrated within a substance use treatment program for pregnant and postpartum people with opioid use disorder (OUD). METHODS: We conducted a prospective pilot clinical trial of sofosbuvir/velpatasvir (SOF/VEL) treatment among postpartum people with OUD and HCV. Feasibility outcomes included rates of HCV treatment utilization and completion, medication adherence, and sustained virologic response 12 weeks after treatment completion (SVR12). Acceptability was measured through self-reported adverse effects and medication adherence. RESULTS: From January 2018 to August 2021, 164 pregnant people received care for OUD at the study site. Among those, 64 (39.0%) were HCV antibody positive and 45 (27.4%) had active HCV infection. Among 45 eligible patients, 32 (71.1%) enrolled and 21 (46.7%) initiated HCV treatment. Of 21 participants who initiated treatment, 16 (76.2%) completed the SOF/VEL treatment, and 11 (52.4%) completed the SVR12. All participants who completed treatment were cured. Common reasons for dropout during the HCV clinical care cascade were OUD treatment discontinuation, illicit substance use recurrence, and lost to follow-up. Participants reported high satisfaction with HCV treatment, including minimal adverse effects, and no HCV treatment concerns. CONCLUSIONS: Nearly half of pregnant people with HCV initiated postpartum treatment within an integrated care model of HCV treatment within a substance use treatment program. Postpartum SOF/VEL was efficacious, tolerable, and acceptable. Despite this, postpartum HCV treatment among people with OUD remains challenging, and many barriers remain.

Governing Integrated Health and Social Care: An Analysis of Experiences in Three European Countries.

Purpose: Achieving greater health and social care integration is a policy priority in many countries, but challenges remain. We focused on governance and accountability for integrated care and explored arrangements that shape more integrated delivery models or systems in Italy, the Netherlands and Scotland. We also examined how the COVID-19 pandemic affected existing governance arrangements. Design/methodology/approach: A case study approach involving document review and semi-structured interviews with 35 stakeholders in 10 study sites between February 2021 and April 2022. We used the Transparency, Accountability, Participation, Integrity and Capability (TAPIC) framework to guide our analytical enquiry. Findings: Study sites ranged from bottom-up voluntary agreements in the Netherlands to top-down mandated integration in Scotland. Interviews identified seven themes that were seen to have helped or hindered integration efforts locally. Participants described a disconnect between what national or regional governments aspire to achieve and their own efforts to implement this vision. This resulted in blurred, and sometimes contradictory, lines of accountability between the centre and local sites. Flexibility and time to allow for national policies to be adapted to local contexts, and engaged local leaders, were seen to be key to delivering the integration agenda. Health care, and in particular acute hospital care, was reported to dominate social care in terms of policies, resource allocation and national monitoring systems, thereby undermining better collaboration locally. The pandemic highlighted and exacerbated existing strengths and weaknesses but was not seen as a major disruptor to the overall vision for the health and social care system. Research limitations: We included a relatively small number of interviews per study site, limiting our ability to explore complexities within sites. Originality: This study highlights that governance is relatively neglected as a focus of attention in this context but addressing governance challenges is key for successful collaboration.

"Attending to Collaboration" in Major System Change in Healthcare in England: A Response Comment on "'Attending to History' in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration".

In this short article we comment upon the recent article by Perry et al "Attending to History" in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration. We welcome the engagement with power, history and heuristics in the Perry et al paper. Our article discusses the importance of researcher positionality in Major System Change research, alongside managerial power and the centrality of politics to remaking health and care services. Additionally, we highlight the work of Ansell and Gash focused on 'collaborative governance' and its potential to offer insight in relation to Major System Change.

Legitimating complementary therapies in the NHS: Campaigning, care and epistemic labour.

Questions of legitimacy loom large in debates about the funding and regulation of complementary and alternative medicine (CAM) in contemporary health systems. CAM's growth in popularity is often portrayed as a potential clash between clinical, state and scientific legitimacies and legitimacy derived from the broader public. CAM's 'publics', however, are often backgrounded in studies of the legitimacy of CAM and present only as a barometer of the legitimating efforts of others. This article foregrounds the epistemic work of one public's effort to legitimate CAM within the UK's National Health Service: the campaign to 'save' Glasgow's Centre for Integrative Care (CIC). Campaigners skilfully intertwined 'experiential' knowledge of the value of CIC care with 'credentialed' knowledge regarding best clinical and managerial practice. They did so in ways that were pragmatic as well as purist, reformist as well as oppositional. We argue for legitimation as negotiated practice over legitimacy as a stable state, and as labour borne by various publics as they insert themselves into matrices of knowledge production and decision-making within wider health care governance.

Doing 'our bit': Solidarity, inequality, and COVID-19 crowdfunding for the UK National Health Service.

The expanding phenomenon of crowdfunding for healthcare creates novel potential roles for members of the public as fundraisers and donors of particular forms of provision. While sometimes interpreted as an empowering phenomenon (Gonzales et al., 2018), or a potentially useful communication of unmet needs (Saleh et al., 2021), scholars have predominantly been critical of the way in which crowdfunding for healthcare normalises unmet needs and exacerbates entrenched inequalities (Berliner and Kenworthy, 2017; Igra et al., 2021; Paulus and Roberts, 2018). We report a thematic analysis of the text of 945 fundraising appeals created on JustGiving and GoFundMe in the first months of the COVID-19 pandemic, where the recipient was NHS Charities Together's dramatically successful COVID-19 Urgent Appeal. Unlike in existing accounts of individual healthcare crowdfunding, we identify the relative absence of both coherent problem definition and of a fundable solution within the pages. Instead, appeals are dominated by themes of solidarity and duty during the UK's 'hard' lockdown of 2020. A national appeal reduces the risks of crowdfunding exacerbating existing health inequalities, but we argue that two kinds of non-financial consequences of collective crowdfunding require further exploration. Specifically, we need to better understand how expanded practices of fundraising co-exist with commitment to dutiful, means-based funding of healthcare via taxation. We must also attend to how celebration of the NHS as a national achievement, might squeeze spaces for critique and challenge. Analyses of crowdfunding need to explore both financial and non-financial aspects of practices within different health system and historical contexts.

Changing health care with, for, or against the public: an empirical investigation into the place of the public in health service reconfiguration.

OBJECTIVES: This study sought to understand the different approaches taken to involving the public in service reconfiguration in the four United Kingdom health systems. METHODS: This was a multi-method study involving policy document analysis and qualitative semi-structured interviews in England, Northern Ireland, Scotland and Wales. RESULTS: Despite the diversity of local situations, interview participants tended to use three frames within which they understood the politics of service reconfigurations: an adversarial approach which assumed conflict over scarce resources (change against the public); a communications approach which defined the problem as educating the public on the desirability of change (change for the public); and a collaborative approach which attempted to integrate the public early into discussions about the shape and nature of desirable services (change with the public). These three framings involved different levels of managerial time, energy, and resources and called on different skill sets, most notably marketing and communications for the communications approach and community engagement for the collaborative approach. CONCLUSIONS: We argue that these framings of public involvement co-exist within organisations. Health system leaders, in framing service reconfiguration as adversarial, communicative or collaborative, are deciding between conceptions of the relationship between health care organisations and their publics in ways that shape the nature of the debates that follow. Understanding the reasons why organisations adopt these frames would be a fruitful way to advance both theory and practice.

Towards a feminist philosophy of engagements in health-related research.

Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of 'engaged' health research have proliferated in recent years. Yet, th ere is no consensus on what, exactly, 'engaging' means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which 'value' can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. Especially, translating feminist tools of reflexivity and positionalityinto the sphere of engagements can enable a synergy of empirical, epistemic and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.

Factors associated with parent views about participation in infant MRI research provide guidance for the design of the Healthy Brain and Child Development (HBCD) study.

PURPOSE: The National Institutes of Health announced the Healthy Brain and Child Development (HBCD) study to further understanding of infant brain development. This study examined perceptions and knowledge about research among the demographic groups to be studied in HBCD. METHOD: 1164 participants (n = 548 pregnant people and 616 mothers of infants < 12 months) completed anonymous, on-line surveys. Domains included research literacy, MRI knowledge, and attitudes about research incentives and biospecimen collection. Logistic regression was used to examine factors related to outcome variables. RESULTS: Knowledge of MRI safety was low and research literacy was high across participants. Likelihood of participation given various incentives differed between participants. Those with lower education were less likely to rate any items as increasing likelihood of participation. Substance use during pregnancy improved the model fit only for items about alternate visit structures (home and telephone visits) and confidentiality. CONCLUSION: Overall results support the feasibility of infant imaging studies, such as HBCD with respondents having high research literacy and interest in learning about their baby's development. Educating potential participants about MRI safety and providing flexible incentives for participation will improve the success of infant MRI studies.

Credibility Contests: Media Debates on Do-It-Yourself Coronavirus Responses and the Role of Citizens in Health Crises.

During the early months of the COVID-19 pandemic in Europe and North America, news outlets ran a series of stories reporting on "do-it-yourself" (DIY) coronavirus responses that were created and implemented by citizens. This news discourse exemplifies and can illuminate wider shifts in the roles of citizens in science, as individuals outside professional science institutions are becoming more actively involved in scientific knowledge production than before, while the epistemic authority of professional "expert" scientists has been increasingly contested. This paper focuses on DIY citizenship, taking news discourses on citizens' DIY coronavirus responses as a lens to explore wider questions around the changing ways in which the roles of different public health actors are delineated and represented under conditions of significant social and epistemic uncertainty. We aim to shed new light on the nature of-and the role of the news media in mediating-the credibility contests and boundary work that is currently at play around DIY citizenship. We do so by focusing on four discourses: polarized discourses around DIY face masks and hand sanitisers; delineation of credible from incredible interventions and actors around DIY coronavirus treatments and tests; delineation of professional science from "fringe" citizen science; and discourses declaring that "we're all in this together." We conclude that making sense of these discourses requires a thorough appreciation of the context in which they emerged. Our analysis reveals how emancipatory accounts of DIY citizenship can mask structural inequalities underlying who can and is expected to "do-it-themselves," and how.

Between a rock and a hard place: Comparing arms' length bodies for public involvement in healthcare across the UK.

Arms' length bodies are often seen as a tool of technocratic governance, designed to insulate decision-making from the politicizing pressures of populist influence. This article examines a subset of arms' length bodies in the UK which challenge this convention: agencies which exist to 'champion' the voice of patients and the public in the four NHS systems (England, Northern Ireland, Scotland and Wales). We compare the functions of these agencies on paper and through qualitative interviews in each system which focused on public involvement in major service change (such as closing hospitals). We found that agencies in all four systems had struggled to demonstrate their legitimacy, squeezed between the demands of the elected Governments they answer to, the NHS organisations they are meant to support and challenge, and the publics whose voices they are meant to amplify. We argue that the evolving solutions found in each system demonstrate a foundational tension between locally-legitimate actors and nationally-capable political savvy.

Transforming health care: the policy and politics of service reconfiguration in the UK's four health systems.

Public involvement in service change has been identified as a key facilitator of health care transformation (Foley et al., 2017) but little is known about how health policy influences whether and how organisations involve the public in change processes. This qualitative study compares policy and practice for involving the public in major service changes across the UK's four health systems (England, Northern Ireland, Wales and Scotland). We analysed policy documents, and conducted interviews with officials, stakeholders, NHS staff and public campaigners (total number of interviewees = 47). Involving the public in major service change was acknowledged as a policy challenge in all four systems. Despite ostensible similarities, there were some clear differences between the four health systems' processes for involving patients and the public in major changes to health services. The extent of central Government oversight, the prescriptiveness of Government guidance, the role for intermediary bodies and arrangements for independent scrutiny of contentious decisions all vary. We analyse how health policy in the four systems has used 'sticks' and 'sermons' to promote particular approaches, and conclude that both policy and the wider system context within which health care organisations try to effect change are significant, and understudied aspect of contemporary practice.

Segmenting communities as public health strategy: a view from the social sciences and humanities.

On the 5th of May 2020, a group of modellers, epidemiologists and biomedical scientists from the University of Edinburgh proposed a "segmenting and shielding" approach to easing the lockdown in the UK over the coming months. Their proposal, which has been submitted to the government and since been discussed in the media, offers what appears to be a pragmatic solution out of the current lockdown. The approach identifies segments of the population as at-risk groups and outlines ways in which these remain shielded, while 'healthy' segments would be allowed to return to some kind of normality, gradually, over several weeks. This proposal highlights how narrowly conceived scientific responses may result in unintended consequences and repeat harmful public health practices. As an interdisciplinary group of researchers from the humanities and social sciences at the University of Edinburgh, we respond to this proposal and highlight how ethics, history, medical sociology and anthropology - as well as disability studies and decolonial approaches - offer critical engagement with such responses, and call for more creative and inclusive responses to public health crises.