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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. • The COVID-19 pandemic is framed as a crisis of different kinds in healthcare. • Framing impacts decision-making and inclusion of stakeholders. • Ethnographic research provides insights into the consequences of these frames. [ABSTRACT FROM AUTHOR]

This paper provides new perspectives on the scholarship on medicalization and demedicalization, building on an ethnography of hymenoplasty consultations in the Netherlands. By examining how doctors can play an active role in demedicalization, this paper presents novel insights into Dutch physicians' attempt to demedicalize the “broken” hymen. In their consultations, Dutch doctors persuade hymenoplasty patients to abandon the assumed medical definition of the “broken” hymen and offer nonmedical solutions to patients' problems. Drawing from unique ethnographical access from 2012 to 2015 to 70 hymenoplasty consultations in the Netherlands, this paper's original contribution comes from closely examining how demedicalization can be achieved through the process of medicalization. It investigates how Dutch physicians go even further in their efforts to demedicalize by medicalizing “cultural” solutions as an alternative course of action to surgery. [ABSTRACT FROM AUTHOR]

The integration of different types of knowledge in epistemically hierarchical settings remains one of the greatest challenges when developing standards for healthcare practices. In this article, we open up the notion of knowledge integration and empirically examine the various ways in which different types of knowledge interact and can be integrated. To allow us to focus on the diverse forms of knowledge as well as their interaction and integration, we combine Moreira's work on repertoires of evaluation with that of Dewulf and Bouwen on frame interactions. We examine the quest for knowledge integration by studying interactions in the case of the development of the COVID-19 vaccination guideline in the Netherlands, a prime example of the encounter of a wide range and diversity of knowledge that needs to be appraised and integrated into guideline recommendations. Drawing on ethnographic observations of more than 70 guideline development meetings between 2021 and 2022, we first map the different types of knowledge and reasonings used by the guideline developers and subsequently analyze their interactions. We identified eight knowledge interaction patterns, being disconnection, polarization, accommodation, incorporation, reconnection, reconciliation, passive juxtaposition, and kaleidoscopic integration. We hereby draw attention to the various possible knowledge interactions encompassed in the concept of "knowledge integration", especially to those in which integration is achieved while differences and incompatibilities are maintained. Finally, we discuss potential ways to facilitate fruitful knowledge interactions during collaborative work which include the ability to accept and sustain tensions between different types of knowledge and making more explicit use of frame or rather repertoire reflection. • The paper explores knowledge integration when developing healthcare standards. • COVID-19 vaccination guideline developers needed to combine diverse knowledge. • Different types of knowledge can interact and be integrated in a variety of ways. • Kaleidoscopic integration' enables integration without resolving differences. • Awareness of conversational practices can foster generative knowledge interactions. [ABSTRACT FROM AUTHOR]

This paper reports on a multiple-case study of prescribing by nurse specialists in Dutch hospital settings. Most analyses of interprofessional negotiations over professional boundaries take a macro sociological approach and ignore workplace jurisdictions. Yet boundary blurring takes place and healthcare professionals renegotiate formal policies in the workplace. This paper studies the division of jurisdictional control over prescribing between nurse specialists and medical specialists in the workplace, and examines the relationship between workplace jurisdiction and legal jurisdiction over prescribing. Data collection took place in the Netherlands during the first half of 2013. The study used in-depth interviews with fifteen nurse specialists and fourteen medical specialists, non-participant observation of nurse specialists' prescribing consultations and document analysis. Great variety was found in the extent to which and way in which nurse specialists' legal prescriptive authority had been implemented. These findings suggest that there is considerable discrepancy between the division of jurisdictional control over prescribing at the macro (legal) level and the division at the micro (workplace) level. [ABSTRACT FROM AUTHOR]

Acquired Brain Injury (ABI) is one of the most common causes of disability and death in adults worldwide. After a period of rehabilitation, many ABI survivors still face complex mind/body conditions when they try to take up their former life again. Besides lasting visible impairments such as weakness and loss of body balance, there are often less obvious disabilities such as extreme fatigue, hypersensitivity for stimuli, memory, concentration and attention problems or personality changes. The aim of this paper is to understand how ABI survivors and their significant others renegotiate their engagements with everyday places, using the concepts of bio- geo -graphical disruption and flow. We conducted in-depth interviews and did a place-mapping exercise with 18 adult ABI survivors and their significant others. The data were analysed according to the principles of thematic analysis, with use of Atlas.ti. In the struggles of ABI survivorsˈ relations with place, our findings show diversity in personal experiences and strategies, as well as commonalities at a more general level. First, having access to meaningful places, old and new, and coming to terms with the fact that some places may not be accessible anymore, appeared to be vital in the participants' process of healing. Second, the interplay or, as we call it, reciprocity, between different places can contribute to wellbeing: for instance, the security and continuity found at home may enable ABI survivors to handle a trip to a crowded city centre. Thus, by framing mind/body problems of ABI survivors in terms of a network of meaningful places rather than as a body with lost functions, our study shows how the reciprocity between multiple places has a potentially positive effect on life post-ABI. • The most significant barriers in engaging with places post-ABI are invisible. • ABI survivors' sense of self unfolds differently in different places. • The interaction or reciprocity between different places can contribute to wellbeing. [ABSTRACT FROM AUTHOR]

Abstract: It has been frequently acknowledged that results of predictive genetic tests may have implications for relatives as well as for the individual client. Ethicists have noted that an individual’s right to know her genetic risk may conflict with a relative’s right not to know this risk. It is hardly recognised, however, that family members may have a role in the production of test results as well. This article reconstructs the actual process of predictive BRCA-testing in the Netherlands, with a special focus on the roles assigned to clients and families and the expectations about family relationships inscribed in this practice. Fieldwork was carried out in an outpatient clinic for clinical genetics in an academic hospital. Data collection included 11 interviews with members of families, observations of counselling interviews between research participants and their clinical geneticist, and interviews with the 2 clinical geneticists involved in the consultations. It compares this process to the American practice of BRCA-testing. Whereas Dutch practice presupposes active involvement of diseased relatives in the testing process, American practice constitutes the client primarily as an independent individual who may or may not decide to involve her relatives. Moreover, Dutch clients are expected to have a harmonious, open and communicative relationship with their relatives. The American client, in contrast, is supposed to have more distant family relationships. It is argued that an interpretation of these differences in terms of ‘the right to know’ and ‘the right not to know’ misses the point, because the production of informative test results depends on the cooperation of relatives. The differences between Dutch and American practice are more adequately interpreted as implying a preference for unambiguous test results versus a preference for individual independence. The paper shows what is lost when opting for one value at the cost of another and discusses several alternatives to circumvent the value conflict at stake. By opening up for discussion the values implicit in BRCA-testing practices, the paper aims to contribute to debates on the overall desirability of these practices. [Copyright &y& Elsevier]

Abstract: This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians’ (both nurses and doctors) and academic researchers’ understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents’ views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each. [Copyright &y& Elsevier]

Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous. [ABSTRACT FROM AUTHOR]

This research focusses on low mood as a generic category in everyday social interactions, outside the clinical realm and among non-patients. We examine if and how a clinical depression label and treatment are employed when low mood occurs in everyday life, which enables us to analyze the extent and content of medicalization and brings to the fore the interactional mechanisms and cultural concerns that potentially drive medicalization. The analysis is based on 316 observations of everyday life in the Netherlands. We observed and recorded interactions in which low mood was spontaneously expressed. Our paper shows that the clinical depression label resonates widely even if low mood is not fully medicalized. People de-medicalize low mood, and low mood can be un-medicalized. Our analysis thus suggests that dominance is not achieved, which nuances Horwitz and Wakefield's claim that the clinical category of depression has come to encompass all forms of low mood. Moreover, uncertainties about the meaning of low mood and about the depression label remain pragmatic concerns of everyday life. The cultural norm of happiness and active citizenship are very prominent in everyday life across medicalized and un-medicalized interactions. These norms thus seem to be a necessary but insufficient condition for medicalization. While pragmatic concerns do not seem to trigger medicalization either, one specific type of concern is consistently related to medicalization: relational conflicts. In sum, the cultural construction of low mood is not dominated by a single medical approach; however, it mirrors the diversity and uncertainties within and around the medical field. [ABSTRACT FROM AUTHOR]

Socioeconomic inequalities in childhood Body Mass Index (BMI) are becoming increasingly more pronounced across the world. Although countries differ in the direction and strength of these inequalities, cross-national comparative research on this topic is rare. This paper draws on harmonized longitudinal cohort data from four wealthy countries—Germany, the Netherlands, the United Kingdom (UK), and the United States (US)—to 1) map cross-country differences in the magnitude of socioeconomic inequalities in childhood BMI, and 2) to examine cross-country differences in the role of three energy-balance-related behaviors—physical activity, screen time, and breakfast consumption—in explaining these inequalities. Children were aged 5–7 at our first timepoint and were followed up at age 8–11. We used data from the German National Educational Panel Study, the Dutch Generation R study, the UK Millennium Cohort Study and the US Early Childhood Longitudinal-Kindergarten Study. All countries revealed significant inequalities in childhood BMI. The US stood out in having the largest inequalities. Overall, inequalities between children with low versus medium educated parents were smaller than those between children with high versus medium educated parents. The role of energy-balance-related behaviors in explaining inequalities in BMI was surprisingly consistent. Across countries, physical activity did not, while screen time and breakfast consumption did play a role. The only exception was that breakfast consumption did not play a role in the US. Cross-country differences emerged in the relative contribution of each behavior in explaining inequalities in BMI: Breakfast consumption was most important in the UK, screen time explained most in Germany and the US, and breakfast consumption and screen time were equally important in the Netherlands. Our findings suggest that what constitutes the most effective policy intervention differs across countries and that these should target both children from medium as well as low educated families. • All countries showed substantial socioeconomic inequalities in childhood BMI. • In all countries, inequalities in BMI steepen over course of primary school. • Protective factors among the most advantaged seem to mainly drive inequalities. • Across most countries, underlying mechanisms for inequalities in BMI are similar. • The relative contribution of each mechanism to BMI inequalities differs per country. [ABSTRACT FROM AUTHOR]

In the Netherlands, there has been much debate on the question whether elderly people over 70 who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying. So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld. The aim of this paper is to describe the phenomenon ‘life is completed and no longer worth living’ from a lifeworld perspective, as it is lived and experienced by elderly people. Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis. The essential meaning of the phenomenon is understood as ‘a tangle of inability and unwillingness to connect to one's actual life’, characterized by a permanently lived tension: daily experiences seem incompatible with people's expectations of life and their idea of whom they are. While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents: 1) a sense of aching loneliness; 2) the pain of not mattering; 3) the inability to express oneself; 4) multidimensional tiredness; and 5) a sense of aversion towards feared dependence. This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample. [ABSTRACT FROM AUTHOR]

Migrants and ethnic minorities are under-represented in spaces created to give citizens voice in healthcare governance. Excluding minority groups from the health participatory sphere may weaken the transformative potential of public participation, (re)producing health inequities. Yet few studies have focused on what enables involvement of marginalised groups in participatory spaces. This paper addresses this issue, using the Participation Chain Model (PCM) as a conceptual framework, and drawing on a case study of user participation in a Dutch mental health advocacy project involving Cape Verdean migrants. Data collection entailed observation, documentary evidence and interviews with Cape Verdeans affected by psychosocial problems (n = 20) and institutional stakeholders (n = 30). We offer practice, policy and theoretical contributions. Practically, we highlight the importance of a proactive approach providing minorities and other marginalised groups with opportunities and incentives that attract, retain and enable them to build and release capacity through involvement. In policy terms, we suggest that both health authorities and civil society organisations have a role in creating ‘hybrid’ spaces that promote the substantive inclusion of marginalised groups in healthcare decision-making. Theoretically, we highlight shortcomings of PCM and its conceptualisation of users' resources, suggesting adaptations to improve its conceptual and practical utility. [ABSTRACT FROM AUTHOR]

The health care costs of population ageing are for an important part attributable to higher mortality rates in combination with high costs of dying. This paper answers three questions that remain unanswered regarding the costs of dying: (1) contributions of different health services to the costs of dying; (2) variation in the costs of dying; and (3) the influence of preceding health care expenses on the costs of dying. We retrieved data on 61,495 Dutch subjects aged 65 and older from July 2007 through 2010 from a regional health care insurer. We included all deceased subjects of whom health care expenses were known for 26 months prior to death ( n = 2833). Costs of dying were defined as health care expenses made in the last six months before death. Lorenz curves, generalized linear models and a two-part model were used for our analyses. (1) The average costs of dying are €25,919. Medical care contributes to 57% of this total, and long-term care 43%. The costs of dying mainly relate to hospital care (40%). (2) In the costs of dying, 75% is attributable to the costliest half of the population. For medical care, this distribution figure is 86%, and for long-term care 92%. Age and preceding expenses are significant determinants of this variation in the costs of dying. (3) Overall, higher preceding health care expenses are associated with higher costs of dying, indicating that the costs of dying are higher for those with a longer patient history. To summarize, there is not a large variation in the costs of dying, but there are large differences in the nature of these costs. Before death, the oldest old utilize more long-term care while their younger counterparts visit hospitals more often. To curb the health care costs of population ageing, a further understanding of the costs of dying is crucial. [ABSTRACT FROM AUTHOR]

Abstract: Providing patients with more person-centred care without increasing costs is a key challenge in healthcare. A relevant but often ignored hindrance to delivering person-centred care is that the current segmentation of the population and the associated organization of healthcare supply are based on diseases. A person-centred segmentation, i.e., based on persons' own experienced difficulties in fulfilling needs, is an elementary but often overlooked first step in developing efficient demand-driven care. This paper describes a person-centred segmentation study of elderly, a large and increasing target group confronted with heterogeneous and often interrelated difficulties in their functioning. In twenty-five diverse healthcare and welfare organizations as well as elderly associations in the Netherlands, data were collected on the difficulties in biopsychosocial functioning experienced by 2019 older adults. Data were collected between March 2010 and January 2011 and sampling took place based on their (temporarily) living conditions. Factor Mixture Model was conducted to categorize the respondents into segments with relatively similar experienced difficulties concerning their functioning. First, the analyses show that older adults can be empirically categorized into five meaningful segments: feeling vital; difficulties with psychosocial coping; physical and mobility complaints; difficulties experienced in multiple domains; and feeling extremely frail. The categorization seems robust as it was replicated in two population-based samples in the Netherlands. The segmentation's usefulness is discussed and illustrated through an evaluation of the alignment between a segment's unfulfilled biopsychosocial needs and current healthcare utilization. The set of person-centred segmentation variables provides healthcare providers the option to perform a more comprehensive first triage step than only a disease-based one. The outcomes of this first step could guide a focused and, therefore, more efficient second triage step. On a local or regional level, this person-centred segmentation provides input information to policymakers and care providers for the demand-driven allocation of resources. [Copyright &y& Elsevier]

Abstract: The ability of patients in many parts of the world to benefit from transplantation is limited by growing shortages of transplantable organs. The choice architecture of donation systems is said to play a pivotal role in explaining this gap. In this paper we examine the question how different defaults affect the decision to register as organ donor. Three defaults in organ donation systems are compared: mandated choice, presumed consent and explicit consent. Hypothetical choices from a national survey of 2069 respondents in May 2011 in the Netherlands – a country with an explicit consent system – suggests that mandated choice and presumed consent are more effective at generating registered donors than explicit consent. [Copyright &y& Elsevier]

Abstract: Western cultural practices and values have largely shaped advance care planning (ACP) policies across the world. Low uptake of ACP among ethnic minority groups in Western countries has been interpreted with reference to cultural differences. This paper adopts a life-history approach to explore attitudes towards ACP among older, first-generation Dutch-Australian and Italian-Australian migrants. Thirty people participated in extended ethnographic interviews (N = 17) and group discussions (N = 13) during 2012. Transcripts were thematically analyzed and interpreted using a Foucauldian perspective on knowledge and power. Migration experiences, ongoing contact with the native country and participation in migrant community support networks influenced attitudes towards ACP. Dutch participants framed ACP discussions with reference to euthanasia, and adopted a more individualist approach to medical decision-making. Italian participants often spoke of familial roles and emphasized a family-based decision making style. The importance of migrant identity has been neglected in previous discussions of cultural factors influencing ACP uptake among ethnic minority groups. The unique migration experience should be considered alongside culturally appropriate approaches to decision-making, in order to ensure equitable access to ACP among migrant groups. [Copyright &y& Elsevier]

Abstract: Increased competition in the health care sector has led hospitals and other health care institutions to experiment with new access allocation policies that move away from traditional expert based allocation of care to price-based priority access (i.e., the option to pay more for faster care). To date, little is known about individuals'' attitude toward price-based priority access and the evaluation process underlying this attitude. This paper addresses the role of individuals'' evaluations of collective health outcomes as an important driver of their attitude toward (price-based) allocation policies in health care. The authors investigate how individuals evaluate price-based priority access by means of scenario-based survey data collected in a representative sample from the Dutch population (N = 1464). They find that (a) offering individuals the opportunity to pay for faster care negatively affects their evaluations of both the total and distributional collective health outcome achieved, (b) however, when health care supply is not restricted (i.e., when treatment can be offered outside versus within the regular working hours of the hospital) offering price-based priority access affects total collective health outcome evaluations positively instead of negatively, but it does not change distributional collective health outcome evaluations. Furthermore, (c) the type of health care treatment (i.e., life saving liver transplantation treatment vs. life improving cosmetic ear correction treatment – priced at the same level to the individual) moderates the effect of collective health outcome evaluations on individuals'' attitude toward allocation policies. For policy makers and hospital managers the results presented in this article are helpful because they provide a better understanding of what drives individuals'' preferences for health care allocation policies. In particular, the results show that policies based on the “paying more for faster care” principle are more attractive to the general public when treatment takes place outside the regular working hours of a hospital. [Copyright &y& Elsevier]

Abstract: The Dutch risk equalization scheme has been improved over the years by including health related risk adjusters. The purpose of the Dutch risk equalization scheme is to prevent risk selection and to correct for predictable losses and gains for insurers. The objective of this paper is to explore the financial incentives for risk selection under the Dutch risk equalization scheme. We used a simulation model to estimate lifetime health care costs and risk equalization contributions for three cohorts (a smoking; an obese; and a healthy living cohort). Financial differences for the three cohorts were assessed by subtracting health care costs from risk equalization contributions. Even under an elaborate risk equalization system, the healthy living cohort was still most financially attractive for insurers. Smokers were somewhat less attractive, while the obese cohort was least attractive. Lifetime differences with healthy living individuals (revenues minus costs) were modest: €4840 for obese individuals and €1101 for smokers. Under a simple form of risk equalization these differences were higher, €8542 and €4620 respectively. Improvement of the risk equalization scheme reduced the gap between costs and revenues. Incentives for undesirable risk selection were reduced, but simultaneously incentives for health promotion were weakened. This highlights a new prevention paradox: improving the level playing field for health insurers will inevitably limit their incentives for promoting the health of their clients. [Copyright &y& Elsevier]

Abstract: While attempts are being made to improve health promotion by following a linear Evidence-Based (EB) approach, the actors involved are aware that the quality of health promotion is not just a matter of supplying ’evidence-based’ interventions to local practitioners, but the result of a situated coproduction process that depends on many factors. This paper explores what constitutes an intervention that works from the perspective of health promotion professionals (HPP), and how, according to them, the development and implementation of interventions should be improved. We interviewed 81 HPPs about the use of 10 health promotion interventions at 30 Municipality Health Services in The Netherlands. The HPPs described an intervention that works as something that produces its intended effects after being realized in a local situation. Interventions are realized by combining elements of a supplied intervention (e.g. a theory, artefacts) with elements that are situated in the local context (e.g. funding, local network). Interventions that are transferred contain implicit assumptions about local contexts, but it is often unclear what precisely constitutes an intervention and what is assumed of local contexts. An intervention that works is a situated configuration of aligned elements. A linear EB approach depends on the realization of the local circumstances in which ’evidence based’ interventions can work. Various strategies are possible for approximating such circumstances, but the core assumption that the configuration that is realized in practice is similar to the ’evidence based’ intervention seems unrealistic for most health promotion in the Netherlands. Under such circumstances, attention should shift from central quality assurance to the system of actors and the distributed actions and heterogeneous learning processes that together add up to interventions that work. [Copyright &y& Elsevier]

Abstract: Health care utilization is expected to rise in the coming decades. Not only will the aggregate need for health care grow by changing demographics, so too will per capita utilization. It has been suggested that trends in health care utilization may be age-specific. In this paper, age-specific trends in health care utilization are presented for different health care sectors in the Netherlands, for the period 1981–2009. For the hospital sector we also explore the link between these trends and the state of medical technology. Using aggregated data from a Dutch health survey and a nationwide hospital register, regression analysis was used to examine age-specific trends in the probability of utilizing health care. To determine the influence of medical technology, the growth in age-specific probabilities of hospital care was regressed on the number of medical patents while adjusting for confounders related to demographics, health status, supply and institutional factors. The findings suggest that for most health care sectors, the trend in the probability of health care utilization is highest for ages 65 and up. Larger advances in medical technology are found to be significantly associated with a higher growth of hospitalization probability, particularly for the higher ages. Age-specific trends will raise questions on the sustainability of intergenerational solidarity in health care, as solidarity will not only be strained by the ageing population, but also might find itself under additional pressure as the gap in health care utilization between elderly and non-elderly grows over time. For hospital care utilization, this process might well be accelerated by advances in medical technology. [Copyright &y& Elsevier]

Abstract: Nutritional conditions in early life may causally affect health at older ages. This paper examines the effects of early life exposure to the Dutch famine (Winter 1944–45) on the prevalence of heart diseases, peripheral arterial diseases (PAD) and diabetes mellitus (DM) at ages 60–76. Analyses are performed using data from the fifth cycle of the Longitudinal Aging Study Amsterdam. Exposure to the famine is determined by reported place of residence during the Dutch famine, with those living in the cities in the West of the Netherlands defined as exposed (n = 278) and those living in the rural areas in the West or living in the North or East defined as non-exposed (n = 521). We successively compare the prevalence of heart diseases, PAD and DM at ages 60–76 of 370 males and 429 females exposed and non-exposed to the famine in early life. We distinguish four age classes of exposure in early life: gestation and infancy (ages 0–1), childhood (age 1–5), pre-adolescence (ages 6–10) and adolescence (ages 11–14). The analysis shows that exposure to severe undernutrition at ages 11–14 is significantly associated with a higher probability of developing DM and/or PAD at ages 60–76. The associations are found only in women, but not in men. If suggests that adolescence may be a critical period with respect to exposure to adverse (nutritional) conditions and that research should take this into account. These findings are relevant for children in developing countries who are exposed to severe nutritional deprivation. [Copyright &y& Elsevier]

Abstract: This paper contributes to current literature on the under-representation of women in academic medicine by critically examining appointment practices for medical professors in the Netherlands. By opening the black box of these highly secretive appointments, it is shown how allegedly gender-neutral practices contribute to the perpetuation of gender inequalities in academic medicine. The methods employed include quantitative analysis of 286 appointment reports and qualitative interviews with 21 scouts. The analysis revealed a dominant pattern of recruitment by invitation by male scouts, leading to three gender mechanisms of inclusion and exclusion through formal/informal networking. When candidates are recruited through homogeneous male networks, the pool of potential candidates is drastically restricted. Women are not seen as obvious choices for professorships since their commitment to the job is questioned. Furthermore, women do not correspond to the image of the ideal manager since they do not appear to conform to the gendered preconceptions of leadership held by the predominantly male scouts. [Copyright &y& Elsevier]

Abstract: Biomedical and public health researchers and practitioners routinely record and comment on ethnicity: however, the use of this category is often vague and without explicit statement on what ethnicity is or how it correlates to health disparities. Presented here is an inquiry into the case of ethnicity in HIV/STI research in the Netherlands. This paper considers the construction and operationalization of the concept ethnicity in HIV/STI epidemiological research in the Netherlands. The concept ethnicity is followed as it is defined, measured, categorized, communicated and constructed in the annual national HIV/STI surveillance report of the Dutch National Institute for Public Health and the Environment (RIVM) and as this construction co-evolves in society through the Dutch media, politics and prevention practice. The epidemiological work of the RIVM on HIV/STI in The Netherlands has resulted in the materialization of a distinct ethnic construction, the high risk sexual ethnic other, presumed, not only to be at heightened risk for HIV, but also to spread HIV in the Netherlands through promiscuity and absent safe sex practices. This construct is shown to be perpetually self-validating as it informs methodological choices, such that, behavioural studies almost always establish ethnic behavioural differences. The construct and related ethnic rhetoric also allow for the extrapolation of "findings" within a specific ethnic group regarding a specific STI to all groups considered ethnic minorities and so a categorical ethnic minority problem group is constructed within Dutch society. This imagery is disseminated through newspaper articles and dialogue in the Dutch House of Representative and HIV/STI prevention practice, through which the construct is reaffirmed and ascribed scientific and social validity. Knowledge of ethnic minorities’ high-risk status and their sexual practices that lead to this become common, and so the construct is further operationalized in government budget planning and subsequent research programmes. [Copyright &y& Elsevier]

Abstract: Across all health care settings, certain patients are perceived as ‘difficult’ by clinicians. This paper’s aim is to understand how certain patients come to be perceived and labelled as ‘difficult’ patients in community mental health care, through mixed-methods research in The Netherlands between June 2006 and October 2009. A literature review, a Delphi-study among experts, a survey study among professionals, a Grounded Theory interview study among ‘difficult’ patients, and three case studies of ‘difficult’ patients were undertaken. Analysis of the results of these qualitative and quantitative studies took place within the concept of the sick role, and resulted in the construction of a tentative explanatory model. The ‘difficult’ patient-label is associated with professional pessimism, passive treatment and possible discharge or referral out of care. The label is given by professionals when certain patient characteristics are present and a specific causal attribution (psychological, social or moral versus neurobiological) about the patient’s behaviours is made. The status of ‘difficult’ patient is easily reinforced by subsequent patient and professional behaviour, turning initial unusual help-seeking behaviour into ‘difficult’ or ineffective chronic illness behaviour, and ineffective professional behaviour. These findings illustrate that the course of mental illness, or at least the course of patients’ contact with mental health professionals and services, is determined by patient and professional and reinforced by the social and mental health care system. This model adds to the broader sick role concept a micro-perspective in which attribution and learning principles are incorporated. On a practical level, it implies that professionals need to look into their own role in the perpetuation of difficult behaviours as described here. [Copyright &y& Elsevier]

Abstract: Based on a case-study of the introduction of measles-mumps-rubella (MMR) vaccine in the Netherlands two decades ago, using documentary and archival sources, this paper examines the way evidence is used in policymaking. Starting from the question of ‘what counts as evidence’, two central claims are developed. First, the decision to introduce MMR was not one but a series of decisions going back at least seven years, over the course of which the significance attached to various forms of evidence changed. Second, results of international studies were coming gradually to be of greater significance than evidence gathered from within the Netherlands itself. These developments had, and continue to have, major consequences for national scientific competences. [ABSTRACT FROM AUTHOR]

Abstract: Can photographs of scars serve as evidence of torture? Amnesty International’s Medical Examination Group in the Netherlands (AI-MEG) has, for more than a decade, been photographing torture scars to supplement the testimonies of asylum seekers who have been denied refuge. AI-MEG only intervenes at this point, when asylum seekers face extradition. Proving allegations of torture is of vital importance, as asylum seekers face rising anti-immigrant sentiment in European countries. All victims examined by AI-MEG present a combination of mental, physical and emotional scars. We summarize five cases where AI-MEG used photography in their medical examinations, and consider the ethical role physicians play in helping asylum seekers obtain refuge. Though photographs cannot capture all forms of trauma, as visual documents, they are a compelling form of concrete evidence of torture. In this way, photographs complement verbal testimonies and help doctors and immigration authorities to see and understand physical scars left by various forms of torture. AI-MEG explains in medical terms the connections between the visible late sequelae of torture and victims’ testimonies. They then assess whether or not the physical scars are consistent with the forms of torture recounted by victims, using the terminology of the Istanbul Protocol (1999), the United Nations–adopted manual of guidelines that explains how to document torture. This paper outlines the medical examination process and argues for the use of photography as medical evidence on behalf of asylum seekers. [Copyright &y& Elsevier]

Abstract: Improvements and innovation in health service organization and delivery have become more and more important due to the gap between knowledge and practice, rising costs, medical errors, and the organization of health care systems. Since training and education is widely used to convey and distribute innovative initiatives, we examined the effect that following an intensive Teach-the-Teacher training had on the dissemination of a new structured competency-based feedback technique of assessing clinical competencies among medical specialists in the Netherlands. We compared this with the effect of the structure of the social network of medical specialists, specifically the network tie strength (strong ties versus weak ties). We measured dissemination of the feedback technique by using a questionnaire filled in by Obstetrics & Gynecology and Pediatrics residents (n =63). Data on network tie strength was gathered with a structured questionnaire given to medical specialists (n =81). Social network analysis was used to compose the required network coefficients. We found a strong effect for network tie strength and no effect for the Teach-the-Teacher training course on the dissemination of the new structured feedback technique. This paper shows the potential that social networks have for disseminating innovations in health service delivery and organization. Further research is needed into the role and structure of social networks on the diffusion of innovations between departments and the various types of innovations involved. [Copyright &y& Elsevier]

Abstract: Hospitals can apply prospective and retrospective methods to reduce the large number of medical errors. Retrospective methods are used to identify errors after they occur and to facilitate learning. Prospective methods aim to determine, assess and minimise risks before incidents happen. This paper questions whether the order of implementation of those two methods influences the resultant impact on incident reporting behaviour. From November 2007 until June 2008, twelve wards of two Dutch general hospitals participated in a quasi-experimental reversed-treatment non-equivalent control group design. The six units of Hospital 1 first conducted a prospective analysis, after which a sophisticated incident reporting and analysis system was implemented. On the six units of Hospital 2 the two methods were implemented in reverse order. Data from the incident reporting and analysis system and from a questionnaire were used to assess between-hospital differences regarding the number of reported incidents, the spectrum of reported incident types, and the profession of reporters. The results show that carrying out a prospective analysis first can improve incident reporting behaviour in terms of a wider spectrum of reported incident types and a larger proportion of incidents reported by doctors. However, the proposed order does not necessarily yield a larger number of reported incidents. This study fills an important gap in safety management research regarding the order of the implementation of prospective and retrospective methods, and contributes to literature on incident reporting. This research also builds on the network theory of social contagion. The results might indicate that health care employees can disseminate their risk perceptions through communication with their direct colleagues. [Copyright &y& Elsevier]

Abstract: Against the background of the increasing academic and political debate on financial incentives for organ donation, we conducted a qualitative investigation on the conditions under which European citizens would actually consider or refuse financial incentives for organ donation. Our paper combines an analysis of data that were collected in eight Focus Group discussions on transplantation medicine with lay people and patients from four European countries (Cyprus, Germany, the Netherlands, and Sweden) with a critical re-assessment of the dichotomy between gift and commodity in the recent political and academic discourse. We find that the distinction between living and post mortem donation on the one hand, and between different models of financial incentives on the other, plays a crucial role for the participants'' values and ideas about organ donation. We discuss the significance of our results with particular respect to the central role of reciprocity and draw conclusions for the bioethical and biopolitical debate. [Copyright &y& Elsevier]

A substantial number of people with 'mild' acquired brain injury (ABI) suffer from cognitive impairments that are not immediately acknowledged as such. Some are eventually referred to multidisciplinary rehabilitation care after months or years of suffering, which is why we have labelled them 'late referrals'. The aim of this paper is to add to the discussion on hopeful adaptation by focussing on the diverse adaptive strategies of late referrals. Hope is typically discussed as a positive emotion that can contribute to transformative processes, but that is also mirrored by despair. We conducted in-depth interviews with ten late referrals in the Netherlands. Our findings demonstrate that the trajectories of late referrals are characterised by wandering and navigating. Wandering is predominantly associated with feeling lost, and not knowing where one is going. While navigating is more purposeful, we found that our participants sometimes navigated in directions that turned out to be dead-end streets. We conclude that hopeful adaptation encompasses a circuitous way of trying and adapting and trying again. As a key recommendation for practice, we suggest that people with cognitive problems due to mild ABI should be supported in reducing the complexities of their everyday lives by taking up challenges one place at a time. • People with mild acquired brain injury are mostly invisible in research and practice. • Hopeful adaptation encompasses a circuitous way of trying and adapting. • Both vigour and resignation are key for individuals with mild acquired brain injury. • People with ABI should be supported to take up challenges one place at a time. [ABSTRACT FROM AUTHOR]

Abstract: The prioritisation of patients on waiting lists is ascribed high potential for diminishing the consequences of waiting times for elective surgery. However, consistent evidence is lacking about which factors determine patient priority and it is unclear whether different stakeholders have different opinions on this issue. This study, conducted in the Netherlands, investigates the judgements of patients, laypersons (i.e. patients on other waiting lists), and physicians on the priority of patients on waiting lists. Participants were former patients with varicose veins (N=82), inguinal hernia (N=86), and gallstones (N=89), 101 surgeons, 95 occupational physicians, and 65 general practitioners. Each participant judged the priority of paper vignettes of patients with varicose veins, inguinal hernia, and gallstones. The vignettes were designed according to conjoint analysis methodology and described the physical symptoms, the psychological distress, the social limitations, and impairments in work of patients. Multilevel regression analysis of the responses showed that all groups made significant distinctions in patient priority depending on the severity of each characteristic in the vignettes. The physical symptoms and impairments in work had on average the highest impact on priority, but the summed impact of non-physical factors exceeded that of the physical symptoms. The different groups of participants appraised only the importance of the physical symptoms differently, but opinions on priority varied widely within each group. Whereas the high level of agreement between the different groups would facilitate the acceptance and the implementation of explicit prioritisation of patients on the waiting list, the high inter-individual variation signifies that consensus criteria for prioritisation are needed to warrant equity and transparency in care provision. [Copyright &y& Elsevier]

Abstract: This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care. [Copyright &y& Elsevier]

A patient-centred approach is increasingly advocated and incorporated in medical education. Due to its multi- dimensionality, however, the concept of patient-centredness appears to be hard to measure and, consequently, to evaluate. The objective of this study was to develop an instrument to measure patient-centredness in line with one central dimension, i.e. physicians' explorative communication skills: the tendency to encourage (or discourage) patients to express their perspective on illness and treatment, by displaying facilitating and inhibiting behaviours. The paper describes the development of the patient-centred behaviour coding instrument (PBCI), and first results of validity and reliability of the instrument. The study was conducted in the outpatient division of an academic teaching hospital in The Netherlands, where follow-up encounters were videotaped and coded. Participants were 30 residents and specialists in general internal medicine, rheumatology and gastro-enterology, and 323 patients having a (video-taped) follow-up appointment with one of these physicians. All recorded consultations were coded using the PBCI. Statistical analyses verified the existence of two dimensions of the PBCI: facilitating and inhibiting behaviours. Interestingly, open and closed questions generally appeared to be indicative of both the facilitating and the inhibiting dimension; only open and closed questions with a psycho-social content were unambiguously classified as facilitating behaviours. Reliability of the facilitating behaviours was high, while reliability of the inhibiting behaviours was moderate. Besides infrequent observations of the inhibiting behaviours, low reliability was partly due to individual inter-rater variability. A global rating of patient-centredness appeared to correlate with the two dimensions in the expected direction: positively with the facilitating and negatively with the inhibiting dimension, indicating the convergent validity of the instrument. [ABSTRACT FROM AUTHOR]

This paper describes educational differences in starting excessive alcohol consumption during 61/2 years of follow-up among 1648 initially alcohol-consuming Dutch adults. The longitudinal GLOBE study provides the unique possibility to study explanations for educational differences due to the collection of extensive baseline information on educational level, alcohol consumption, stressors (tension reduction theory) and vulnerability indicators (differential vulnerability theory) in 1991. Alcohol consumption was again assessed in 1997. We report that lower educated people were almost three times more likely to start excessive alcohol consumption during follow-up compared to the highest educated persons. Both educational differences in exposure to stressors (financial problems) and vulnerability (low social support) contributed to the educational differences in starting excessive alcohol consumption and explained 23% of the educational variation in starting excessive alcohol consumption. Remaining educational differences were however still statistically significant. These results are discussed with regard to implications for interventions and possible additional explanatory mechanisms. [Copyright &y& Elsevier]

In 1996, a debate erupted in the Netherlands about versterven: dying as a result of abstaining from eating and drinking. This discussion initially appeared to be one of the many side-shows to the wider Dutch euthanasia debate, but it continued to dominate the debate for the next few years, with newspaper headlines reporting "involuntary dehydration" in nursing homes. Part of the reason for this was the term itself Introduced to refer to terminal dehydration, the word versterven had peculiar connotations and this, together with the way in which it was used, caused much confusion and controversy. Was versterven related to euthanasia? Did it denote dying naturally and peacefully or a horrible death imposed on helpless phychogeriatric patients? Was it (could it be) voluntary? Was the patient in control? Was it good death? This paper examines the discussion about, and the media representations of, versterven, focusing on its ambiguity and its relationship to good death. [ABSTRACT FROM AUTHOR]

Vaginal complaints are a common presenting problem in primary care settings. A disease model has dominated current research and treatment paradigms, with little attention to the illness or experiential dimensions of vaginal complaints. In this paper, we report data from a qualitative study of the experiences of women diagnosed with vaginitis. In semi-structured interviews with 44 women in New York City, United States, we investigated women''s interpretations and explanations of their illness, their accounts of its impact on their lives, their experiences with treatment, and the role of vaginal symptoms in communicating distress and anger. We found that women''s explanations of vaginal complaints differed strikingly from the current medical model described in the literature on vaginitis. Vaginal symptoms often occasioned extreme anxiety; their impact on social and sexual functioning could be severe. Finally, vaginal symptoms often functioned to express distress and gender conflict. These findings have important implications for the management of the disorder. [Copyright &y& Elsevier]

Health Technology Assessment (HTA) uses explicit methods to determine the value of a health technology. This typically results in several claims regarding the effects that are expected to follow from the use of a health technology in a particular context. These claims seem to capture conclusions based solely on facts, but they often combine empirical information with normative presuppositions. Claims that have this character reflect (implicit) value judgments and have been labelled mixed claims. Not recognizing these normative components of such claims risks value inattention and value imposition , presenting results as self-evident and not in need of any moral justification. As proposed by Anna Alexandrova, to avoid these risks of value inattention and imposition we need rules to deal with mixed claims. According to her, when producing and evaluating mixed claims we need to unearth the invoked value presuppositions and check whether these presuppositions are invariant to disagreements. By applying these rules, the robustness of mixed claims can be checked: it can be evaluated whether their truth value is independent from the way in which their components, involving normative presuppositions, are conceptualized. This paper aims to illustrate the role of mixed claims in HTA, and expand upon the work by Alexandrova, by analyzing claims and recommendations presented in an HTA report on the introduction of Non-Invasive Prenatal Testing (NIPT) in The Netherlands. Our results show that the report contains mixed claims, and that a normative analysis of these claims can help to clarify the normativity of HTA and evaluate the robustness of claims on alleged effects of a health technology. • HTA examines claims on potential effects of health technology. • Conceptualizing these effects may invoke value judgments. • Causal claims invoking value judgments have been described as mixed claims. • We analyzed mixed claims in an HTA report on Non-Invasive Prenatal Testing. • This showed that normative analysis helps evaluating the robustness of these claims. [ABSTRACT FROM AUTHOR]

History helps us to better understand the particulars of the form and functions of institutions. In this paper we present the case study of the evolution of health care financing in the Netherlands over the past 150 years, through the lens of incremental institutional change. Our historical and political analysis is based on a review of secondary literature as well as relevant policy documents, parliamentary debates and archival material. We use the conceptual framework of incremental institutional change (i.e. layering, conversion, drift and displacement) for our analysis. The constitutional program of the mid-nineteenth century laid down the foundations of a 'private initiative first, government last'-approach to health care financing in the Netherlands. Over the course of 150 years this led to the evolution of a complex layered system of financial arrangements consisting of direct public funding, national, social and private health insurance with complex interdependencies. This was not a conscious strategy, but a result of the fact that the central government in the Netherlands preferred to tackle specific problems in health care financing with very specific measures, so as not to intrude on the trade of civil society and commercial business in health care. Regulatory authority and statist power in and over health care financing is not something that was created through dramatic reform in the Netherlands, but came about through many decades of small, incremental, yet accumulating changes. This provides a case study for further analysis of incremental versus rapid change in health care systems internationally. • Health insurance in the Netherlands expanded gradually, not through big changes. • Dutch politics has always favoured 'private initiative' over state intervention. • The Dutch health care market is far more public than it seems. [ABSTRACT FROM AUTHOR]

During the first years of a baby's life, parents develop ways of caring that affect the child's health later in life. In this paper, we focus on eating and sleeping, as social practices that mediate between socioeconomic and cultural conditions and health outcomes, such as weight status. We argue for an analysis of what we call 'family health competence', meaning emerging know-hows and resources relevant to healthy living produced, embodied and shared by household members, to understand the development of health practices of first-time parents and their children. In an ethnographic panel study in the Netherlands, we follow households pre-birth until the first child turns age four. Our analysis suggests that across different families, competences develop enabling parents to balance a) attaching and b) detaching in particular ways. Parents learn how to observe and interpret their new-borns, bracket doubt, build trust, manage time pressures and mobilize support networks. These competences are partly class and gender-specific while there is also significant diversity within class and gender. The competence to balance attachment and detachment can be understood as the effect of contradictory social norms and institutional (labour market and care) provisions typical for late-modern welfare states. • Eating and sleeping practices mediate between social conditions and health outcomes. • 'Family health competences' are emerging know-hows and resources. • Families develop competences to balance attaching and detaching in particular ways. • These ways are partly class and gender-specific, but show within-group diversity. • Families deal with contradictory social norms and labour market and care provisions. [ABSTRACT FROM AUTHOR]

Data science and psychiatry have diverse epistemic cultures that come together in data-driven initiatives (e.g., big data, machine learning). The literature on these initiatives seems to either downplay or overemphasize epistemic differences between the fields. In this paper, we study the convergence and divergence of the epistemic cultures of data science and psychiatry. This approach is more likely to capture where and how the cultures differ and gives insights into how practitioners from both fields find ways to work together despite their differences. We introduce the notions of "epistemic virtues" to focus on epistemic differences ethnographically, and "trading zones" to concentrate on how differences are negotiated. This leads us to the following research question: how are epistemic differences negotiated by data science and psychiatry practitioners in a hospital-based data-driven initiative? Our results are based on an ethnographic study in which we observed a Dutch psychiatric hospital department developing prediction models of patient outcomes based on machine learning techniques (September 2017 – February 2018). Many epistemic virtues needed to be negotiated, such as completeness or selectivity in data inclusion. These differences were traded locally and temporarily, stimulated by shared epistemic virtues (such as a systematic approach), boundary objects and socialization processes. Trading became difficult when virtues were too diverse, differences were enlarged by storytelling and parties did not have the time or capacity to learn about the other. In the discussion, we argue that our combined theoretical framework offers a fresh way to study how cooperation between diverse practitioners goes and where it can be improved. We make a call for bringing epistemic differences into the open as this makes a grounded discussion possible about the added value of data-driven initiatives and the role they can play in healthcare. • Data science and psychiatry have diverse epistemic cultures. • Epistemic differences are navigated locally and temporarily in data-driven initiatives. • Negotiations about differences are stimulated by shared epistemic virtues. • The negotiations become complex when epistemic virtues are too diverse. • Reflection on epistemic differences is crucial for the data-driven initiatives. [ABSTRACT FROM AUTHOR]

In contemporary healthcare policies the logic of Evidence-based Medicine (EBM) is typically proposed as a way of addressing a demand to explicitly justify policy decisions. Policymakers' use of 'evidence' is presumed to pertain to ideals of justice in decision-making. However, according to some, EBM is liable to generate 'epistemic injustice' because it prefers quantitative types of evidence and – as a result of that – potentially undervalues the qualitative testimonies of doctors and patients. Miranda Fricker's concept of 'epistemic injustice' refers to a wrong done to a person in their capacity as a knower. This paper explores the usefulness and limits of this concept in the context of public decision-making. How is evidence-based policymaking intertwined with questions of 'epistemic injustice'? Drawing from ethnographic research conducted at the National Health Care Institute, we analyze two cases of EBM-inspired policy practices in Dutch social health insurance: 1) the use of the principles of EBM in making a public reimbursement decision, and 2) private insurers' use of quantitative performance indicators for the practice of selective contracting on the Dutch healthcare market. While the concept of 'epistemic injustice' misses some key processes involved in understanding how 'knowing gets done' in public policy, it does shed new light on priority-setting processes. Patients or medical professionals who are not duly recognized as credible and intelligible epistemic agents, subsequently, lack the social power to influence priority-setting practices. They are thus not merely frustrated in their capacity to be heard and make themselves understood, they are potentially deprived of a fair share in collective financial and medical resources. If we fail to recognize inequalities in credibility and intelligibility between diverse groups of knowers, there is a chance that these epistemic inequalities are being reproduced in our system of health insurance and our ways of distributing healthcare provisions. • The concept of 'epistemic injustice' sheds new light on priority-setting processes. • Not all patients or professionals are credited equal status as epistemic agent. • Participation in priority-setting requires that agents are credibly understood. • Lack of recognition as epistemic agent means less influence on priority-setting. • Structural epistemic inequalities can be reproduced in allocating public resources. [ABSTRACT FROM AUTHOR]