Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives

Governments are increasingly inviting patient organizations (POs) to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations (SHOs), a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the discussion on the role of governments in steering SHOs. There are different degrees of regulation (very little in Austria, more in Germany). Governments in both countries not only formulate explicit criteria for SHOs with respect to patient representation but also guide SHOs representing patients through implicit criteria for associations. We discuss the findings against concepts of responsiveness, authorization, and accountability. Our findings indicate that governmental steering is not negative per se as indicated by previous research but—depending on legislative criteria—can promote transparency and democratic quality in patient representation.     

One For All,All For One? Collective Representation in Healthcare Policy

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in (Western) bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.     

Are ME/CFS Patient Organizations “Militant”?

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.     

Participatory destigmatization strategies among Palestinian citizens,Ethiopian Jews and Mizrahi Jews in Israel

Abstract

This study examines how members of minority groups in Israel cope with stigmatization in everyday life. It focuses on working-class members of three minority groups: Palestinian Arabs or Palestinian citizens of Israel, Mizrahim (Jews of Middle Eastern and North African origin) and Ethiopian Jews. It reveals the use of racial, ethnic and national markers in daily processes of social inclusion and exclusion in one sociopolitical context. Palestinians, a group with a fixed external identity and a limited sphere of participation, were found to use the language of race and racism when describing stigmatizing encounters. Ethiopian Jews, the most phenotypically marked group, strictly avoided this language. For their part, Mizrahi Jews perceived the very discussion of stigmatization as stigmatizing, while often using ‘contingent detachment’ to distance themselves from negative group identities. Despite differences between the communities and the powerful role of the state in establishing symbolic and social boundaries, members of all three groups expressed their intention to achieve or retain avenues for participation in the larger society.     

The incidence of dementia in England and Wales: findings from the five identical sites of the MRC CFA Study

BackgroundAlthough incidence of dementia is known to vary between nations, variation within country has not been explored because most incidence studies are single site or have insufficient numbers to compare sites. Few countries have conducted multisite incidence studies in order to facilitate national comparisons. This study aims to provide robust measures of the variation of the incidence of dementia across sites within England and Wales and produce overall estimates by age and sex.ConclusionThere is no evidence, within England and Wales, of variation in dementia incidence across sites. Dementia incidence rates do not tail off at the oldest ages.     

Ordinary people doing extraordinary things: responses to stigmatization in comparative perspective

Abstract

This special issue offers a first systematic qualitative cross-national exploration of how diverse minority groups respond to stigmatization in a wide variety of contexts. This research is the culmination of a coordinated study of stigmatized groups in Brazil, Israel and the USA, as well as of connected research projects conducted in Canada, France, South Africa and Sweden. The issue sheds light on the range of destigmatization strategies ordinary people adopt in the course of their daily life. Articles analyse the cultural frames they mobilize to make sense of their experiences and to determine how to respond; how they negotiate and transform social and symbolic boundaries; and how responses are enabled and constrained by institutions, national ideologies, cultural repertoires and contexts. The similarities and differences across sites provide points of departure for further systematic research, which is particularly needed in light of the challenges for liberal democracy raised by multiculturalism.     

Les silex et autres matières premières comme preuves de contacts entre les groupes de chasseurs-cueilleurs pendant le Paléolithique supérieur de la région cantabrique (nord de l’Espagne) : synthèse de l’information disponible

Flint was the most widely used lithic raw material in Europe in Prehistory and, more specifically, was a fundamental resource in the economic and social networks of hunter-gatherer groups in the Cantabrian Spain during the Upper Palaeolithic. The undeniable preference for it compared with other resources was due to a series of factors, such as its easy availability because of its abundance and wide distribution of outcrops, and its excellent qualities for knapping. This summary of the available information about flint and other raw materials used by hunter-gatherers is framed in the context of Upper Palaeolithic occupations in Cantabrian Spain. First, it presents the studies focusing on the provenance of the different types of flint that are found in those occupations; their quantitative representation at each of the sites; their preference, if that is the case, over other raw materials; and the model of their diffusion across the territory. Then other resources are considered, such as quartzite, ochre and different metamorphic, sedimentary and igneous rocks, as well as some materials of biological origin, such as amber, jet/lignite and fossils of animal origin. However, the information available about the use of the latter raw materials in Cantabrian Spain during the Upper Palaeolithic is quite limited and studies of their characterisation are very recent.     

Life- and person-centred help in Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a randomised controlled trial

ABSTRACT: BACKGROUND: The provision of appropriate medical and nursing care for people with dementia is a major challenge for the healthcare system in Germany. New models of healthcare provision need to be developed, tested and implemented on the population level. Trials in which collaborative care for dementia in the primary care setting were studied have demonstrated its effectiveness. These studies have been conducted in different healthcare systems, however, so it is unclear whether these results extend to the specific context of the German healthcare system. The objective of this population-based intervention trial in the primary care setting is to test the efficacy and efficiency of implementing a subsidiary support system on a population level for persons with dementia who live at home. Methods and study design The study was designed to assemble a general physician-based epidemiological cohort of people above the age of 70 who live at home (DelpHi cohort). These people are screened for eligibility to participate in a trial of dementia care management (DelpHi trial). The trial is a cluster-randomised, controlled intervention trial with two arms (intervention and control) designed to test the efficacy and efficiency of implementing a subsidiary support system for persons with dementia who live at home. This subsidiary support system is initiated and coordinated by a dementia care manager: a nurse with dementia-specific qualifications who delivers the intervention according to a systematic, detailed protocol. The primary outcome is quality of life and healthcare for patients with dementia and their caregivers. This is a multidimensional outcome with a focus on four dimensions: (1) quality of life, (2) caregiver burden, (3) behavioural and psychological symptoms of dementia and (4) pharmacotherapy with an antidementia drug and prevention or suspension of potentially inappropriate medication. Secondary outcomes include the assessment of dementia syndromes, activities of daily living, social support health status, utilisation of health care resources and medication. DISCUSSION: The results will provide evidence for specific needs in ambulatory care for persons with dementia and will show effective ways to meet those needs. Qualification requirements will be evaluated, and the results will help to modify existing guidelines and treatment paths. Trial registration NCT01401582.     

Spatiotemporal Context Awareness for Urban Traffic Modeling and Prediction: Sparse Representation Based Variable Selection

Spatial-temporal correlations among the data play an important role in traffic flow prediction. Correspondingly, traffic modeling and prediction based on big data analytics emerges due to the city-scale interactions among traffic flows. A new methodology based on sparse representation is proposed to reveal the spatial-temporal dependencies among traffic flows so as to simplify the correlations among traffic data for the prediction task at a given sensor. Three important findings are observed in the experiments: (1) Only traffic flows immediately prior to the present time affect the formation of current traffic flows, which implies the possibility to reduce the traditional high-order predictors into an 1-order model. (2) The spatial context relevant to a given prediction task is more complex than what is assumed to exist locally and can spread out to the whole city. (3) The spatial context varies with the target sensor undergoing prediction and enlarges with the increment of time lag for prediction. Because the scope of human mobility is subject to travel time, identifying the varying spatial context against time lag is crucial for prediction. Since sparse representation can capture the varying spatial context to adapt to the prediction task, it outperforms the traditional methods the inputs of which are confined as the data from a fixed number of nearby sensors. As the spatial-temporal context for any prediction task is fully detected from the traffic data in an automated manner, where no additional information regarding network topology is needed, it has good scalability to be applicable to large-scale networks.     

Stigmatization and Denormalization as Public Health Policies: Some Kantian Thoughts

The stigmatization of some groups of people, whether for some characteristic they possess or some behavior they engage in, will initially strike most of us as wrong. For many years, academic work in public health, which focused mainly on the stigmatization of HIV‐positive individuals, reinforced this natural reaction to stigmatization, by pointing out the negative health effects of stigmatization. But more recently, the apparent success of anti‐smoking campaigns which employ stigmatization of smokers has raised questions about whether stigmatization may sometimes be justified, because of its positive effects on public health. Discussion of the issue so far has focused on consequences, and on some Kantian considerations regarding the status of the stigmatized. In this article, I argue that further Kantian considerations regarding the treatment of the general public (the potential stigmatizers) also count against any public health policy involving stigmatization. Attempts to encourage stigmatization are likely to fail to appeal to the rational decision‐making abilities of the general public, and the creation of stigmatized groups (even if they are stigmatized for their voluntary behavior) is an obstacle to the self‐improvement of members of the general public.     

The difference between generalist and specialist: the effects of wide fluctuations in main food abundance on numbers and reproduction of two co-existing predators

Specialist individuals within animal populations have shown to be more efficient foragers and/or to have higher reproductive success than generalist individuals, but interspecific reproductive consequences of the degree of diet specialisation in vertebrate predators have remained unstudied. Eurasian pygmy owls (hereafter POs) have less vole-specialised diets than Tengmalm's owls (TOs), both of which mainly subsist on temporally fluctuating food resources (voles). To test whether the specialist TO is more limited by the main prey abundance than the generalist PO, we studied breeding densities and reproductive traits of co-existing POs and TOs in central-western Finland during 2002–2019. Breeding densities of POs increased with augmenting densities of voles in the previous autumn, whereas breeding densities of TOs increased with higher vole densities in both the previous autumn and the current spring. In years of vole scarcity, PO females started egg-laying earlier than TOs, whereas in years of vole abundance TO females laid eggs substantially earlier than PO females. The yearly mean clutch size and number of fledglings produced of both POs and TOs increased with abundance of voles in the current spring. POs laid large clutches and produced large broods in years of both high and low vole abundance, whereas TOs were able to do so only in years of high vole abundance. POs were able to raise on average 73% of the eggs to fledglings whereas TOs only 44%. The generalist foraging strategy of POs including flexible switching from main prey to alternative prey (small birds) appeared to be more productive than the strictly vole-specialized foraging strategy of TOs. In contrast to earlier studies at the individual-level, specialist predators at the species level (in this case TOs) appear to be less effective than generalists (POs), but diet specialisation was particularly costly under conditions when scarcity of main foods limited offspring production.     

The politics of genealogical incorporation: ethnic difference,genetic relatedness and national belonging*

This paper explores the relationship between genomic accounts of ethnic origins and distinctiveness and genealogical models of ethnic and national similarity and difference. It does so by focusing on genetic investigations of Irish Traveller origins in the context of ongoing campaigns for state recognition of Irish Travellers as an ethnic group, and in relation to the politics of national belonging. The ostensibly ethical practice of liberal genomics is entangled with the fraught politics of the Irish state’s commitments to addressing ethnic minority rights, insistence on differentiating between Travellers and other ethnic groups on the basis of genealogical difference, and the genealogical incorporation of Travellers within the national community of shared descent. Though ideas of ancestral relatedness across social or cultural boundaries are often figured as politically progressive, locating groups within a national family tree on the basis of genealogical relatedness can simultaneously deny ethnic difference and naturalize exclusive models of nationhood.     

Supporting families involved in court cases about life‐sustaining treatment: Working as academics,advocates and activists

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.     

Racial boundaries,stigma, and the re-emergence of “always being foreigners”: Iranians and the refugee crisis in Germany

The 2015 refugee crisis is at the center of public and political discourse across Europe, especially among nations that have accepted refugees. Utilizing ethnographic fieldwork and 48 in-depth interviews conducted in 2011 and 2016 with Iranians in Hamburg, Germany, this paper considers how the refugee crisis impacts the racial boundaries between Germans and immigrant communities. It details how the crisis has made ethnic nationalism, Islamophobia, anti-foreigner prejudice and racism more pronounced and salient throughout Germany. The interviews demonstrate that this climate affects Iranians in several ways: they cite feeling more threat and stigma, as well as experiences of marginality, perpetual foreignness, and discrimination. This research contributes to sociological scholarship on migration and race by examining how critical international events influence and shape processes of racialization, identity and belonging, and social boundaries and hierarchies.     

Obese Children,Adults and Senior Citizens in the Eyes of the General Public: Results of a Representative Study on Stigma and Causation of Obesity

Obese individuals are blamed for their excess weight based on causal attribution to the individual. It is unclear whether obese individuals of different age groups and gender are faced with the same amount of stigmatization. This information is important in order to identify groups of individuals at risk for higher stigmatization and discrimination. A telephone interview was conducted in a representative sample of 3,003 participants. Experimental manipulation was realized by vignettes describing obese and normal-weight children, adults and senior citizens. Stigmatizing attitudes were measured by semantic differential. Causal attribution was assessed. Internal factors were rated with highest agreement rates as a cause for the vignette''s obesity. Lack of activity behavior and eating too much are the most supported causes. Importance of causes differed for the different vignettes. For the child, external causes were considered more important. The overweight vignette was rated consistently more negatively. Higher educational attainment and personal obesity were associated with lower stigmatizing attitudes. The vignette of the obese child was rated more negatively compared to that of an adult or senior citizen. Obesity is seen as a controllable condition, but for children external factors are seen as well. Despite this finding, they are faced with higher stigmatizing attitudes in the general public, contradicting attribution theory assumptions. Internal and external attribution were found to be inter-correlated. Obese children are the population most at risk for being confronted with stigmatization, making them a target point in stigma-reduction campaigns.     

Genetic differentiation of Anopheles claviger s.s. in France and neighbouring countries

An investigation of polymorphism of 11 autosomal and one sex-linked allozyme loci was made on 18 samples of Anopheles claviger Meigen (Diptera: Culicidae) from localities across France and neighbouring sites in Germany and Switzerland, plus one sample of Anopheles petragnani Del Vecchio from the French Pyrénées. Genetic differentiation between these two sibling species was confirmed (Nei genetic distance 0.33-0.44) and two genetically distinct groups of populations were identified within An. claviger. These two forms of An. claviger showed contiguous geographical distributions, Group I found across western and Central France, Group II in eastern France and nearby parts of Germany and Switzerland. The two groups were in contact in a region near the Rhone Valley where two intermediate samples were found. The taxonomic significance of this finding is discussed in the context of the recent climatic history of Europe and in relation to the vector potential of each member of the An. claviger complex.     

Mitochondrial Replacement Techniques

In this article, I draw on research carried out in Europe, primarily in Germany, on patients’ and scientists’ perspectives on mitochondrial replacement techniques (MRTs) in order to explore some of the complexities related to collective representation in health governance, which includes the translation of emerging technologies into clinical use. Focusing on observations, document analyses, and interviews with eight mitochondrial disease patient organization leaders, this contribution extends our understanding of the logic and meanings behind the ways in which patient participation and collective representation in health governance initiatives take shape. My findings highlight the ways in which a commitment to a global mitochondrial disease patient community and a sense of patient solidarity influence expressions of support with regard to legalizing mitochondrial replacement techniques. My analyses illustrate how normative practices and expectations of participatory governance potentially foreclose opportunities for sustained collective patient engagement with the complex ethical, social, and political dimensions of emerging technologies and may silence diverse and potentially dissenting embodied and lived responses to the prospects of particular technological developments.     

Influence of Personal Social Network and Coping Skills on Risk for Suicidal Ideation in Chinese University Students

Background

Personal social network and coping skills have important influences on suicidality of young people and such influences must be understood in the context of other factors. This study aims to assess the influences of social contacts and coping skills on risk for suicidal ideation and to disentangle their possible pathways using a large sample of university students from China.

Methods

5972 students, randomly selected from 6 universities in China, completed the questionnaire survey for the study. Logistic regression was performed to estimate individual effect of social contacts and coping skills on risk for suicidal ideation. A partial least squares path model (PLSPM) was used to probe possible paths of their effects in the context of psychopathology.

Results

Of the 5972 students, 16.39% reported the presence of suicidal ideation. Poor social contacts were significantly associated with an increased risk for suicidal ideation. The influence of coping skills varied by coping styles adapted toward problems. A high score of skills on seeking guidance and support, problem solving as well as seeking alternative rewards was associated with a reduced risk of suicidal ideation; whereas a high score of acceptance or resignation, emotional discharge as well as logical analysis was associated with a significantly increased risk. Modeling the data with PLSPM indicated that the avoidance coping skills conferred the most important dimensional variable in suicidal ideation prediction, followed by the approach coping skills and social network.

Conclusions

Poor social contacts and deficient coping skills are strong risk factors for suicidal ideation in young students. Prevention program focusing on these problems may have an enduring effect on reducing suicidal behavior in this population.