The patient representation struggle during the COVID-19 pandemic: Missed opportunities for resilient healthcare systems.

BACKGROUND: The role of patient participation and representation during crises, such as the COVID-19 pandemic, has been under-researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID-19 pandemic. METHODS: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. RESULTS: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision-making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision-making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. CONCLUSIONS: The struggle for patient representation during pandemic decision-making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision-making offer lessons for future representation activities. However, adaptations to the crisis decision-making structure are also needed to enable patient representatives to play their role. PATIENT CONTRIBUTION: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co-authored this paper.

The development of Dutch COVID-19 ICU triage guidelines from an institutional work perspective.

INTRODUCTION: Throughout the COVID-19 pandemic, two ICU triage guidelines were developed in the Netherlands-the Pandemic Guideline and the Guideline Code Black-ostensibly to tackle the threat of absolute care scarcity. Healthcare guidelines are generally based on evidence and prescribe what healthcare professionals should do in certain situations. We used the institutional work perspective, focusing on the human agency to create, maintain, and/or disrupt institutional structures, to study the development of these guidelines and observed that they did a lot more than just offering guidance to healthcare professionals. By including the Actor Network Theory (ANT) perspective on materiality's agency in our theoretical lens, we show how guidelines, as a materiality-a non-human artefact-interact with human actors and as such shape and are shaped by the social context. METHODS: 17 online documents were analyzed. This analysis resulted in a timeline of events, which was used to identify key actors in the guideline development process. We included 12 purposely sampled respondents for semi-structured interviews. Interview transcripts were thematically coded. RESULTS: During their development, the guidelines played a role in diverse forms of institutional work performed by a variety of stakeholders to: 1) strengthen the medical profession of intensivists; 2) control the medical profession; 3) gain support for the actions needed; and 4) protect the medical profession. In turn, institutional work performed by these stakeholders also shaped the guidelines, indicating the two-sidedness of the interaction between human actors and materiality in the healthcare context. CONCLUSIONS: This case study shows how guidelines as a materiality and human actors interact and influence each other in multiple ways, resulting in institutional work and thus shaping two institutions: the guidelines and healthcare professions. We found that a materiality does not stand on its own but influences and shapes institutional work in relation to human actors. By studying the development, implementation, and use of the guidelines, we gained more empirical insights into the impact materiality can have on the social context of healthcare and how this can influence existing institutional environments.

Framing the pandemic: Multiplying "crises" in Dutch healthcare governance during the emerging COVID-19 pandemic.

In this paper we explore the impact of the emerging COVID-19 pandemic on the governance of healthcare in the Netherlands. In doing so, we re-examine the idea that a crisis necessarily leads to processes of transition and change by focusing on crisis as a specific language of organizing collective action instead. Framing a situation as a crisis of a particular kind allows for specific problem definitions, concurrent solutions and the inclusion and exclusion of stakeholders. Using this perspective, we examine the dynamics and institutional tensions involved in governing healthcare during the pandemic. We make use of multi-sited ethnographic research into the Dutch healthcare crisis organization as it responded to the COVID-19 pandemic, focusing on decision-making at the regional level. We tracked our participants through successive waves of the pandemic between March 2020 and August 2021 and identified three dominant framings of the pandemic-as-crisis: a crisis of scarcity, a crisis of postponed care and a crisis of acute care coordination. In this paper, we discuss the implications of these framings in terms of the institutional tensions that arose in governing healthcare during the pandemic: between centralized, top-down crisis management and local, bottom-up work; between informal and formal work; and between existing institutional logics.

Mediating scarcity in pandemic times: an ethnographic study on the prevention and control of SARS-CoV-2 infections during the emergence of the corona crisis in the Netherlands.

BACKGROUND: In this paper we explore how staff involved with infection prevention managed the emerging COVID-19 crisis in the context of scarcity of Personal Protective Equipment (PPE), focussing specifically on the (re)writing of guidelines. We conceptualize guidelines as 'mediating devices' as they translate between evidence and clinical practice, between management and the workplace, as well as the different values embedded in these domains. It is this mediation, we argue, that adds to the resilience of healthcare organizations. The setting for this research is an elite academic hospital in the Netherlands during the emergence of the COVID-19 pandemic. METHODS: We conducted non-participative observations, semi-structured interviews, and document analysis during the emerging pandemic (March-July 2020). We observed meetings from the crisis team and the unit for infection prevention (210 hours), interviewed members of these teams (21 interviews) and analysed guidelines and flowcharts concerning infection prevention, as such collecting a unique and rich qualitative dataset. Analysis was done through thematic coding. RESULTS: Our results show the writing and rewriting of guidelines as a fundamental characteristic of dealing with scarcity and adding to resilience. We found three main practices our research participants engage in while trying to manage the uncertain situations emerging from the scarcity of personal protection equipment. The first practice we observe is defining safety; dealing with different perspectives and experiences of what 'working safely' means. The second entails the anticipation of scarcity by which our participants aim to control the situation through monitoring, research and creating scenarios. The third practice we observe is finding new ways to use PPE that is available, by experimenting and tinkering with the material. CONCLUSION: Infection prevention guidelines are crucial in managing the emerging crisis. We discuss how the writing of guidelines mediates between different settings, timeframes, and different worlds of quality. Through (re)writing there is a constant negotiation and discussion with the various actors about what works, and there is a continuous adaptive attitude. At the cost of a lot of work and struggle, this creates a resilient and inclusive work environment useful in a long-lasting crisis.

Layering risk work amidst an emerging crisis: an ethnographic study on the governance of the COVID-19 pandemic in a university hospital in the Netherlands.

The start of the COVID-19 pandemic early 2020 has confronted healthcare sectors with risks and uncertainties on an unprecedented scale in recent history. Healthcare organisations faced acute problems, the answers to which had to be provided, and recalibrated, at short notice and informally. University hospitals played a pivotal role in providing these answers and in (re)calibrating institutional arrangements. Based on ethnographic research in an elite university hospital in the Netherlands, in this article we explore the concrete practices of governing risks and uncertainties that COVID-19 posed for the organisation of healthcare. Our fieldwork consisted of the observation of meetings at the level of the hospital boards, the staff, and the regional level. We collected relevant documents and interviewed key-actors. This approach offers us a large dataset on acute risk governance 'from within' and allows us to offer a layered ethnographic account of managerial practices. In our analysis we focus on conceptualising the work-as-done in the university hospital as risk work. We show how the risk work of our participants is generally characterised by high speed and delineated by scarcities. We differentiate between three modes of risk work: working on numbers, working on expertise and working on logistics. This risk work appears innovative, but our analysis stresses how participants' work happened in interaction with traditional institutional logics and routines.

Practicing Corona - Towards a research agenda of health policies.

As Corona virus is putting a huge stress on healthcare systems around the world, analysts of health policy will have to respond with starting up research on the consequences of current policies. In this paper, we propose an agenda for research of health policy from a governance perspective, focussing on the consequences of decision-making structures and practices, the mediatisation of the pandemic, the organisation of healthcare systems and the role of expertise.

Research in haematological cancers: What do patients in the Netherlands prioritise?

INTRODUCTION: The experiential knowledge of patients can provide research communities with complementary perspectives on disease. The aim of this study was to identify and prioritise everyday problems and research needs of haematological cancer patients and people who have undergone a stem cell transplantation. METHODS: A mixed-method participatory research approach (the Dialogue Model) was applied, including interviews (n = 19), four focus group discussions (n = 27), a questionnaire (n = 146) and a stakeholder dialogue meeting (n = 30) with patients in the Netherlands. RESULTS: Patients' physical discomfort, psychosocial issues, problems with the healthcare system and policy issues were highlighted. Respondents prioritise research aimed at factors potentially influencing survival, such as lifestyle, and research aimed at improving patients' quality of life, for example improving memory and concentration problems. Topics also focused on physical discomfort, causal mechanisms, and healthcare organisation and policies. Research of a social scientific character is underrepresented, and as such, patients' everyday problems are not all directly reflected in the research agenda. CONCLUSIONS: Our findings indicate that patients, besides emphasising the importance of improving survival, have a clear desire to increase control over their lives.

Involving Patients and Families in the Analysis of Suicides, Suicide Attempts, and Other Sentinel Events in Mental Healthcare: A Qualitative Study in The Netherlands.

Involving patients and families in mental healthcare is becoming more commonplace, but little is known about how they are involved in the aftermath of serious adverse events related to quality of care (sentinel events, including suicides). This study explores the role patients and families have in formal processes after sentinel events in Dutch mental healthcare. We analyzed the existing policies of 15 healthcare organizations and spoke with 35 stakeholders including patients, families, their counselors, the national regulator, and professionals. Respondents argue that involving patients and families is valuable to help deal with the event emotionally, provide additional information, and prevent escalation. Results indicate that involving patients and families is only described in sentinel event policies to a limited extent. In practice, involvement consists mostly of providing aftercare and sharing information about the event by providers. Complexities such as privacy concerns and involuntary admissions are said to hinder involvement. Respondents also emphasize that involvement should not be obligatory and stress the need for patients and families to be involved throughout the process of treatment. There is no one-size-fits-all strategy for involving patients and families after sentinel events. The first step seems to be early involvement during treatment process itself.

Talking with parents about end-of-life decisions for their children.

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.