Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.     

Representative Claims in Healthcare: Identifying the Variety in Patient Representation

In many countries patient involvement is high on the healthcare policy agenda, which includes patient representation in collective decision-making. Patient organizations are generally considered to be important representatives of patients. Other actors also claim to represent patients in decision-making, such as politicians, healthcare professionals, and client advisory councils. In this paper we take a broad view of patient representation, examining all the actors claiming to represent patients in the Dutch debate on the decentralization of care. We conclude that variety in forms of representation could help do justice to the variety of patient preferences. In addition we conclude that in order to ensure the democratic quality of patient representation, actors making representative claims have to reflect on how their claims relate to each other and how they can ensure authorization and accountability in the representative relationship with those they claim to represent.     

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.     

Industrial Recycling Networks as Starting Points for Broader Sustainability‐Oriented Cooperation?

Closing loops by intercompany recycling of by‐products is a core theme of industrial ecology (IE). This article considers whether industrial recycling networks or industrial symbiosis projects can be used as a starting point for much broader intercompany cooperation for sustainable development. Evidence presented is based on the results of an empirical investigation of the recycling network Styria in Austria, the recycling network Oldenburger Münsterland in Germany, and the manufacturing sector in Austria. Statistical analysis shows that the percentage of by‐products that are passed on to other companies for recycling purposes is not higher in member companies of the recycling networks than in the other companies of the manufacturing sector in Austria. In terms of cooperation, the relationships with the respective recycling partners are found to be very similar to regular customer relations. Furthermore, the companies of the recycling networks remain unaware of the network to which they belong. Instead, one of the main findings of this study is that intercompany recycling activities are regarded by the company representatives as bilateral market transactions, not as collaborative network activities. This has potentially significant implications for the use of industrial symbiosis networks as starting points for sustainability networks with broader cooperation toward sustainability. The findings raise interesting questions as to whether such broader cooperation might result from a conscious planning process or might emerge largely spontaneously as part of normal market coordination. In any case, intercompany recycling is clearly considered to be a very important field of collaborative action for sustainability in industry.     

Psychiatric institutions, their architecture, and the politics of regional autonomy in the Austro-Hungarian monarchy

This paper examines the planning process and architecture of two public psychiatric institutions built around 1900 in Trieste and Lower Austria. From 1864, the building of new asylums was the responsibility of Crown land governments, which by the end of the nineteenth century had emerged as sites of power and self-presentation by minority groups and new political parties. At the same time, the area of asylum planning was establishing itself as a branch of asylum psychiatry and promoting the idea of the asylum as model settlement, contributing to social reform. I analyse the interaction of psychiatrists, architects and government officials involved in planning the two institutions in the context of Crown land governments' self-positioning within the empire and internationally (especially in relation to Italy and Germany). The Trieste asylum planners were working for a government controlled by Italian nationalists, but their desire for a 'modern' asylum turned them towards German models. The Christian Social government in Lower Austria sought to supplant Germany as the leader in this branch of science. The spatial arrangement and visual articulation of the two asylums is interpreted in the context of the interaction of psychiatry and the politics of regional autonomy.     

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.     

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.     

Rethinking patient involvement in healthcare priority setting

With healthcare systems under pressure from scarcity of resources and ever-increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy level. We find that the standard justifications for patient representation, such as to achieve patient-relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants.     

Polar organizers and girdling bands of microtubules are associated with γ-tubulin and act in establishment of meiotic quadripolarity in the hepatic Aneura pinguis (Bryophyta)

Summary. Meiosis in Aneura pinguis is preceded by extensive cytoplasmic preparation for quadripartitioning of the diploid sporocyte into a tetrad of haploid spores. In early prophase the four future spore domains are defined by lobing of the cytoplasm and development of a quadripolar prophase spindle focused at polar organizers (POs) centered in the lobes. Cells entering the reproductive phase become isolated and, instead of hooplike cortical microtubules, have endoplasmic microtubule systems centered on POs. These archesporial cells proliferate by mitosis before entering meiosis. In prophase of each mitosis, POs containing a distinct concentration of γ-tubulin appear de novo at tips of nuclei and initiate the bipolar spindle. Cells entering meiosis become transformed into quadrilobed sporocytes with four POs, one in each lobe. This transition is a complex process encompassing assembly of two opposite POs which subsequently disperse into intersecting bands of microtubules that form around the central nucleus. The girdling bands define the future planes of cytokinesis and the cytoplasm protrudes through the restrictive bands becoming quadrilobed. Two large POs reappear in opposite cleavage furrows. Each divides and the resulting POs migrate into the tetrahedral lobes of cytoplasm. Cones of microtubules emanating from the four POs interact to form a quadripolar microtubule system (QMS) that surrounds the nucleus in meiotic prophase. The QMS is subsequently transformed into a functionally bipolar metaphase spindle by migration of poles in pairs to opposite cleavage furrows. These findings contribute to knowledge of microtubule organization and the role of microtubules in spatial regulation of cytokinesis in plants. Correspondence and reprints: Department of Biology, University of Louisiana-Lafayette, Lafayette, LA 70504-2451, U.S.A.     

Trouble with the Gray Literature

In much of the tropics, the gray literature—published by nongovernmental organizations, governments, intergovernmental organizations, consultancies, private companies, and individuals—has a greater volume than the peer‐reviewed scientific literature in ecology and conservation. I discuss why this is a problem in terms of quality, discovery, access, and archiving. Unpublished dissertations and theses are another vast untapped source of information in tropical biology. Internet search engines can potentially integrate access to all information sources, but only if the producers of gray literature and theses greatly improve electronic access. Digital repositories can provide both this accessibility and permanent archiving.     

Is multiculturalism dead? Groups,governments and the ‘real work of integration’

Understood as a philosophy counselling group rights and concomitant public policies undertaken by governments to preserve and enhance group identities, multiculturalism has little purchase in European immigrant integration debates. However, based on interviews with various actors engaged in policies that affect immigrants in the Netherlands and Germany, we argue that multiculturalism remains a going concern if it is understood as a problem-solving practice through which governments acknowledge and work with ethnic and religious groups to address issues of mutual concern, particularly on issues related to gender. We label this ‘multicultural governance’ and argue that it supports the principal ends of integration policy: the socialization of immigrants into prevailing national languages, norms and institutions.     

Calcium promotes activity and confers heat stability on plant peroxidases

In this paper we demonstrate how peroxidase (PO) activities and their heat stability correlate with the availability of free Ca²⁺ ions. Calcium ions work as a molecular switch for PO activity and exert a protective function, rendering POs heat stable. The concentration ranges of these two activities differ markedly. POs are activated by µM Ca²⁺ concentration ranges, whereas heat stabilization is observed in the nM range. This suggests the existence of different Ca²⁺ binding sites. The heat stability of POs depends on the source plant species. Terrestrial plants have POs that exhibit higher temperature stability than those POs from limnic and marine plants. Different POs from a single species can differ in terms of heat stability. The abundance of different POs within a plant is dependent on age and developmental stage. The heat stability of a PO does not necessarily correlate with the maximum temperature the source species is usually exposed to in its natural habitat. This raises questions on the role of POs in the heat tolerance of plants. Consequently, detailed investigations are needed to identify and characterize individual POs, with regard to their genetic origin, subcellular expression, tissue abundance, developmental emergence and their functions in innate and acquired heat tolerance.     

Strategies to enable the adoption of animal biotechnology to sustainably improve global food safety and security

The ability to generate transgenic animals has existed for over 30 years, and from those early days many predicted that the technology would have beneficial applications in agriculture. Numerous transgenic agricultural animals now exist, however to date only one product from a transgenic animal has been approved for the food chain, due in part to cumbersome regulations. Recently, new techniques such as precision breeding have emerged, which enables the introduction of desired traits without the use of transgenes. The rapidly growing human population, environmental degradation, and concerns related to zoonotic and pandemic diseases have increased pressure on the animal agriculture sector to provide a safe, secure and sustainable food supply. There is a clear need to adopt transgenic technologies as well as new methods such as gene editing and precision breeding to meet these challenges and the rising demand for animal products. To achieve this goal, cooperation, education, and communication between multiple stakeholders—including scientists, industry, farmers, governments, trade organizations, NGOs and the public—is necessary. This report is the culmination of concepts first discussed at an OECD sponsored conference and aims to identify the main barriers to the adoption of animal biotechnology, tactics for navigating those barriers, strategies to improve public perception and trust, as well as industry engagement, and actions for governments and trade organizations including the OECD to harmonize regulations and trade agreements. Specifically, the report focuses on animal biotechnologies that are intended to improve breeding and genetics and currently are not routinely used in commercial animal agriculture. We put forward recommendations on how scientists, regulators, and trade organizations can work together to ensure that the potential benefits of animal biotechnology can be realized to meet the future needs of agriculture to feed the world.     

Dealing with complex matters: the political regulation of genetic testing and genetic counseling in Austria,Germany and Japan

The three OECD countries Austria, Germany and Japan in the 1990s and 2000s had to react to the increased application of genetic testing. The paper describes and analyses the regulatory efforts of the three countries that at first sight look very different from each other, Austria featuring a law on genetic testing, Germany finally regulating the matter by law after a long series of failed attempts to do so and Japan being content with self-regulation by medical professionals. Yet upon closer inspection a number of similarities become visible between the three democracies’ efforts to come to terms with the challenges of dealing with a matter as knowledge-intensive and complex as genetic testing and counseling.     

The times are changing: temporal shifts in patterns of fish invasions in central European fresh waters

This study examines the invasion history of alien fish species based on exhaustive national data sets on fish invasions of two contiguous central European countries (Germany and Austria). Fifteen alien fish species are currently established in both countries, constituting 14 and 17% of the total freshwater fish fauna of Germany and Austria, respectively. In both countries, six alien species are present, but not established. The status of five alien species in Germany and three species in Austria remains unknown. Accumulation rates of alien fish species have increased in recent decades with >50% of them reported after 1971. North America and Asia were the primary sources of alien fish species in Germany and Austria up to the 1980s, whereas European species of Ponto‐Caspian origin dominate now. Fisheries (including aquaculture) and the animal trade were responsible for most earlier introductions, whereas waterways were the main pathway for recent invaders. The extent of the spatial distribution of alien species was positively correlated with residence time, i.e. the time elapsed since the first national record. Different thermal preferences of early invaders (mostly coldwater species) and new invaders (typically warmwater adapted) may benefit the latter in the face of climate change. It is concluded that new challenges for alien fish management arise and that ecosystem‐based approaches as endorsed by the E.U. Water Framework Directive (maintaining or restoring good ecological status of rivers and streams) should become the centrepiece of river management in Europe.     

Aspects of late triassic palynology. 3. Palynology of latest triassic and earliest jurassic deposits of the northern limestone alps in Austria and southern Germany,with special reference to a palynological characterization of the Rhaetian stage in Europe

The present paper provides a palynological analysis of samples from the “Kössener Schichten”, “Schattwalder Schichten” and the ammonoid (Psiloceras planorbe)-bearing beds of the “Fleckenmergel/Fleckenkalk” found in the vicinity of Salzburg (Austria and adjacent part of Germany).It is shown that the compositional development of latest Triassic—earliest Jurassic palynological assemblages from Alpine sequences matches the situation in the Germanic realm. A characteristic phase in this development is interpreted in terms of the Rhaetipollis germanicus Assemblage Zone. It is considered that this zone could well be regarded as a palynological characterization of the Rhaetian Stage in Europe and North America.Although palynology does not support the Rhaetian concept based on the occurrence of the species Choristoceras marshi exclusively, the traditional ammonoid-based Triassic—Jurassic boundary can be palynologically recognized.     

ORIGINS AND ACTIVATION OF PROPHENOLOXIDASES IN THE DIGESTIVE TRACT OF THE CRICKET,Gryllus bimaculatus

The function of Phenoloxidases (POs) in sclerotization and defense in insects is well understood, but little is known concerning their occurrence, origins, and function in the digestive tract. In Gyrllus bimaculatus gut all of the PO activity is found in the lumen of the digestive tract, and no detectible activity is found in homogenates of the gut epithelium or secretions from incubated epithelial tissues. Prophenoloxidases (PPOs) are synthesized in the hemocytes of Bombyx mori and are transported into the cuticle. It is suggested that the PPOs in the caecal lumen of G. bimaculatus likewise are synthesized in hemocytes and are transported by unknown means into the caecal lumen, where they are activated to POs by trypsin. Peristalsis transports the POs both forward into the crop and posterior within the peritrophic membrane into the hind gut. The PPOs in the hemolymph consist of a trimer (270–280 kDa) and a tetramer (340–370 kDa). The active POs in the gut lumen consist of a monomer (85–95 kDa) in addition to an activated trimer and tetramer.     

Incidence,mortality and outcome of meningiomas: A population-based study from Germany

BackgroundMeningiomas are mostly benign tumors that originate from the coverings of the brain and spinal cord. Compared to malignant glial tumors, meningiomas are relatively understudied with regard to their risk factors and epidemiology. In particular, population-based data on cancer burden and patient outcomes are scant.MethodsPopulation-based data from Saarland, a federal state in South-Western Germany, were used; the data included 992 patients diagnosed with a first meningioma between 2000 and 2015. Incidence and mortality rates—as well as estimates of observed and relative survival and cumulative incidence of tumor recurrence up to 10 years after diagnosis—were derived by sex, age, WHO grade, and whether or not the patient had undergone surgery.ResultsThis population-based study not only included patients treated in the regional university hospital but also those treated elsewhere or patients without any surgical treatment. The mean age of the patients at diagnosis was 63 years, and 70%, 28% and 3% had WHO grade I, II and III meningiomas, respectively. Ten-year observed and relative survival of all patients combined was 72% and 91% respectively. Tumor-related mortality varied by sex and increased with age at diagnosis and the WHO grade of the tumor. The overall 10-year cumulative incidence of meningioma recurrence was 9%.ConclusionThis analysis represents the first modern population-based analysis of meningioma incidence and mortality and outcomes of patients with such neoplasms in Germany. Derived from an unselected sample of patients, this study may fill a hitherto existing gap in the literature on meningiomas.     

Local Mangrove Planting in the Philippines: Are Fisherfolk and Fishpond Owners Effective Restorationists?

Local fisherfolk and fishpond owners have been practicing “restoration” of mangrove forests in some parts of the Philippines for decades, well before governments and non‐government organizations began to promote the activity as a conservation tool. This paper examines ecological characteristics of these mangrove plantations and compares them to natural mangroves in the same areas. Mangrove planters were interviewed and plantation and natural mangrove forests were surveyed to measure forest structure, composition and regeneration. Compared with natural forests, mangrove plantations were characterized by high densities of small stems, shorter and narrower canopies, and fewer species. For both economic and ecological reasons, the vast majority of people dispersed and planted only Rhizophora mucronata/stylosa and, furthermore, they often thinned other species out of planted areas. There was remarkably little subsequent recruitment of other, nonplanted mangrove species into plantations up to 50 and 60 years of age. This pattern held across a diversity of sites, including plantations that had not been selectively cut or weeded. Important ecological and economic benefits result from local mangrove planting, but catalyzing diverse forest regeneration—at least in the short to medium term—is not one of them. The lesson: if you want to restore diverse mangrove forests, you have to plant diverse mangrove forests.     

Assessment of Patient Empowerment - A Systematic Review of Measures

BackgroundPatient empowerment has gained considerable importance but uncertainty remains about the best way to define and measure it. The validity of empirical findings depends on the quality of measures used. This systematic review aims to provide an overview of studies assessing psychometric properties of questionnaires purporting to capture patient empowerment, evaluate the methodological quality of these studies and assess the psychometric properties of measures identified.MethodsElectronic searches in five databases were combined with reference tracking of included articles. Peer-reviewed articles reporting psychometric testing of empowerment measures for adult patients in French, German, English, Portuguese and Spanish were included. Study characteristics, constructs operationalised and psychometric properties were extracted. The quality of study design, methods and reporting was assessed using the COSMIN checklist. The quality of psychometric properties was assessed using Terwee’s 2007 criteria.Findings30 studies on 19 measures were included. Six measures are generic, while 13 were developed for a specific condition (N=4) or specialty (N=9). Most studies tested measures in English (N=17) or Swedish (N=6). Sample sizes of included studies varied from N=35 to N=8261. A range of patient empowerment constructs was operationalised in included measures. These were classified into four domains: patient states, experiences and capacities; patient actions and behaviours; patient self-determination within the healthcare relationship and patient skills development. Quality assessment revealed several flaws in methodological study quality with COSMIN scores mainly fair or poor. The overall quality of psychometric properties of included measures was intermediate to positive. Certain psychometric properties were not tested for most measures.DiscussionFindings provide a basis from which to develop consensus on a core set of patient empowerment constructs and for further work to develop a (set of) appropriately validated measure(s) to capture this. The methodological quality of psychometric studies could be improved by adhering to published quality criteria.