Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

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. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Governments are increasingly inviting patient organizations 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, 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. 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. (shrink)

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. (shrink)

Far from being in disarray, American private and public colleges and universities are stronger academically than ever before but the vast majority desperately need institutional financial support.

Nanotechnology presents significant challenges in terms of developing a regulatory framework. This is due to a lack of scientific knowledge about the behaviour of the technology in its interactions with biological and ecological processes, the environment and other technologies. Crucially, there is a great deal of uncertainty surrounding the potential environmental and human health and safety impacts of NT. Consequently, the development of NT is a potential test case for framing new models of ‘soft law’ voluntary governance as a substitute (...) for traditional command and control type regulation. Driven by ‘new science governance,’ an approach based on a combination of ideas in anticipatory ethics, future-oriented responsibility, upstream public engagement and deliberation and theories of justice may offer a solution. The uniqueness of the approach can be found in the incorporation of anticipatory approaches via public participation and deliberation as the input into procedural justice approaches with distributional justice as the output. The overarching objective of this work is to contribute to the discussion in relation to the internalisation of responsibility and the building of intellectual and societal capacity to anticipate negative consequences before they arise in the hope that such an approach could be the antithesis of the retrospective imposition of responsibility and liability after the harm is done, which is the outcome of traditional regulatory and ethical approaches. Ultimately, the purpose is to contribute to the long-term sustainability of NT. (shrink)

Governments are increasingly inviting patient organizations 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, 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. 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. (shrink)

This commentary comprises three different responses to Counted and Zock’s article: “Place Spirituality: An Attachment Perspective.” The first response is from Esther Sternberg, MD, who gives a psychophysiological and neuroscience critique. The second is from Altaf Engineer, PhD, from the perspective of architecture and environmental psychology, and the last response is from Hester Oberman, PhD, who gives a psychology of religion rebuttal.

This case describes an adolescent in a crisis of a chronic medical condition whose situation is complicated by substance abuse and mental illness. D. Micah Hester provides an analytic approach, teasing apart the multiple layers of medical, developmental, and moral issues at hand and describing possible responses and outcomes. Amy T. Campbell examines existing legal guidelines for adolescent decision making, arguing that greater space exists for clinical discretion in these matters than commonly thought. Cheryl D. Lew discusses the development (...) of agency in adolescent patients, the ideal of autonomous decision making in the context of impairment and chronic illness, and the obligation of healthcare teams to examine an adolescent patient’s decisions in relation to her identity. (shrink)

In response to Anne L. Dalle Ave and David M. Shaw, we agree with their general argument but emphasize a moral risk of HIV disclosure in deceased donation cases: the risk of relational rupture. Because of the importance that close relationships have to our sense of self and our life plans, this kind of rupture can have long-ranging implications for surviving loved ones. Moreover, the now-deceased individual cannot participate in any relational mending. Our analysis reveals the hefty moral costs that (...) disclosure can bring, which should influence what information is given to wouldbe donors and how organ procurement coordinators approach these conversations. (shrink)

"The art object has its own immanent validity," says Hester. By this rather obscure phrase he seeks to dramatize his claim that, modern linguistics and logical positivism notwithstanding, "the poet... succeeds in making the relation between his physical language and its meaning nonconventional." Ostensibly, Hester's book is a discussion and refutation of the claim that meaning is a matter of conventional usage. Poetic metaphor, unlike the literal or technical language he claims Wittgenstein is thinking of, is a "fusion (...) of sense, sensa, and imagery," with sense equivalent to literal meaning through conventional use, sensa equivalent to sound and its onomatopoetic similitudes, and imagery being the "associations" that the writer or reader experiences during the metaphorical "experience-act." Hester holds that poetic metaphors, and their "cousins," scientific models, are "image laden, ambiguous, implicatively full..." but that, unlike the free association inkblots used by the psychologist, they clearly delineate the realm of relevant, meaningful image-association. He believes that Wittgenstein would have accepted metaphor as one of his "language games," but still insists that this language game is useful for communicating meanings, despite the fact that one cannot ostensively identify the conventions of usage for the bounded associations. The book is thus a veritable Pandora's Box of classic problems in the philosophies of mind, language, and aesthetics, and in fact it is the overambitiousness of the work which causes it again and again to leave important problems unresolved.—E. H. W. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:In Their Father’s Library: Books Furnish Not Only a Room, But Also a Tradition ELIZABETH POWERS Although they shared close life dates and became famous in the same years for their epistolary novels, Johann Wolfgang von Goethe (1749–1832) and Fanny Burney (1752–1840) would seem to have been worlds apart literarily. (Goethe had in his Weimar library a copy of Evelina, while Burney was probably not ignorant of the Europe-wide (...) sensation The Sorrows ofYoung Werther.) What might be called their literary apprenticeship, however, was remarkably similar, consisting not of schooling in a traditional institution in which students (and, importantly, most eighteenth-century writers) were drilled in the classical curriculum, but, instead, from wide reading within the confines of their fathers’ libraries. It is true that Goethe and his younger sister Cornelia were supplied at home with a number of tutors and that their progress was monitored by their father, but their acquaintance with literature was fostered within the confines of the family home. Burney had no formal education at all. Indeed, on the appearance of Evelina, her father (according to her diary) remarked : “[S]he has had very little Education but what she has given herself,—less than any of the others!” Burney, however, had the advantage of growing up in a milieu in which books mattered. While the Goethes were eminently respectable, on the mother’s side part of what was the patriciate of the city of Frankfurt, the Burney household in London was bursting with wits and with what can only be called celebrities. The Burneys knew God and the world: David Garrick, Dr. Johnarion 28.1 spring/summer 2020 116 in their father’s library son, Hester Thrale. As Virginia Woolf noted of the famous father, Dr. Charles Burney, he was a musician “who could talk of intellectual things and ask clever people to his house.” Goethe has given plenty of evidence of roaming freely among his father’s books, a collection of 1,700 calfskin-bound volumes. When Burney went to serve at the court of King George III, Queen Charlotte was disappointed at how few books the author of Evelina possessed. (Similarities accumulate: Goethe also served at court, as minister in the duchy of Weimar.) But why cart around a load of books? As Burney wrote in her diary: “[M]y Father’s most delightful Library, as I then told her [the Queen], with my free access to it, had made [owning my own books] a thing unnecessary... ” Libraries in the eighteenth and early nineteenth century, whether private or public affairs, were not like contemporary public libraries, catering to a wide array of tastes, but were repositories of what Matthew Arnold termed “the best that is known and thought in the world.” Let’s call it the Western intellectual and cultural heritage. Most respectable homes would possess at a minimum a Bible, while the holdings in private homes, as evident in the library of Goethe’s father, could reach astounding proportions. According to Burney biographer Claire Harman, Fanny’s brother left at his death one of the finest private libraries of the age. Moreover, the antiquity of the works in the venerable libraries scattered across Europe from Dublin to Saint Petersburg, and especially their survival despite centuries of vicissitudes, was testimony to the authoritative nature of the transmission. Anyone who took the Bible in hand, who took lessons from it, adhering, for instance, to the injunctions of the Ten Commandments, was conscious of subscribing to values shared by preceding generations. Literary practitioners, also showing obeisance to authoritative predecessors, followed earlier models, in the process contributing to an evolving literary heritage. There was no purity in this transmission. It was truly promiscuous, but its quasi-biological character, like a mother’s left-handedness in a child, can be seen in the family Elizabeth Powers 117 resemblances among writers of different eras. Just as individuals perpetuate traits of their parents, so literature and the other arts recycled features of artistic predecessors. Writers as diverse in background and language and religion as Ariosto and Milton transmitted the dna, so to speak, of such epical forebears as Homer and Virgil. This sort of family legitimacy was... (shrink)

Judgment aggregation theory, which concerns the translation of individual judgments on logical propositions into consistent group judgments, has shown that group consistency generally cannot be guaranteed if each proposition is treated independently from the others. Developing the right method of abandoning independence is thus a high-priority goal. However, little work has been done in this area outside of a few simple approaches. To fill the gap, we compare four methods based on distance metrics between judgment sets. The methods generalize the (...) premise-based and sequential priority approaches to judgment aggregation, as well as distance-based preference aggregation. They each guarantee group consistency and implement a range of distinct functions with different properties, broadening the available tools for social choice. A central result is that only one of these methods (not previously considered in the literature) satisfies three attractive properties for all reasonable metrics. (shrink)

How should pragmatists respond to and contribute to the resolution of one of America's greatest and most enduring problems? Given that the most important thinkers of the pragmatist movement—Charles S. Peirce, William James, John Dewey, and George Herbert Mead—said little about the problem of race, how does their distinctly American way of thinking confront the hardship and brutality that characterizes the experience of many African Americans in this country? In 12 thoughtful and provocative essays, contemporary American pragmatists connect ideas with (...) action and theory with practice to come to terms with this seemingly intractable problem. Exploring themes such as racism and social change, the value of the concept of race, the role of education in ameliorating racism, and the place of democracy in dealing with the tragedy of race, the voices gathered in this volume consider how pragmatism can focus new attention on the problem of race. Contributors are Michael Eldridge, Eddie S. Glaude, Jr., Judith M. Green, D. Micah Hester, Donald F. Koch, Bill E. Lawson, David E. McClean, Gregory F. Pappas, Scott L. Pratt, Alfred E. Prettyman, John R. Shook, Paul C. Taylor, and Cornel West. (shrink)

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Quantum mechanical measurements on a physical system are represented by observables - Hermitian operators on the state space of the observed system. It is an important question whether all observables may be realized, in principle, as measurements on a physical system. Dirac’s influential text ( [1], page 37) makes the following assertion on the question: The question now presents itself – Can every observable be measured? The answer theoretically is yes. In practice it may be very awkward, or perhaps even (...) beyond the ingenuity of the experimenter, to devise an apparatus which could measure some particular observable, but the theory always allows one to imagine that the measurement can be made. This Letter re-examines the question of whether it is possible, even in principle, to measure every quantum mechanical observable. Unexpectedly, ideas from com-. (shrink)

The considerable attention to financial interests in clinical research has focused mostly on academic medical centers, even though the majority of clinical research is conducted in community practice settings. To fill this gap, this article maps the practices and policies in 73 community hospitals and several hundred specialized facilities around the country for reviewing clinical investigators’ financial relationships with research sponsors. Community hospitals face a substantially different mix of issues than academic medical centers do because their physician researchers are usually (...) not employees, and more of their studies are later-phase, multicenter trials. Accordingly, community physicians stand to benefit personally from per capita payments, but they tend to have less direct influence over research findings when compared with their academic peers. These and other contrasts require separate guidance for community-based organizations that takes into account their particular needs, circumstances, and institutional capacities. (shrink)