Myalgic encephalomyelitis or chronic fatigue syndrome is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations —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. (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 medical ethics, we are often concerned with questions that pertain predominantly to the treatment of a particular individual. However, in a number of cases it is crucial to broaden the scope of our moral inquiry beyond consideration of the individual alone, since the interests of the individual can come into conflict with the interests of the wider community. How should we resolve such conflicts between the interests of the individual and the collective? Most readers of this journal will likely (...) be familiar with the moral theory ‘classical utilitarianism’, which enjoins us to bring about the greatest happiness for the greatest number. This theory offers straightforward guidance in such conflicts, since it will typically be the case that the interests of the many will outweigh the interests of the individual in the utilitarian’s moral calculus. However, the simplicity of this approach is typically understood to be an inadequacy of the theory rather than an appropriate solution to these conflicts; contrary to the implications of classic utilitarianism, we would not believe it permissible to kill one innocent person in order to harvest life-saving organs for five others. Of course, adherents of utilitarianism have responded to this sort of problem by refining the theory in various ways. However, one may invoke different kinds of moral apparatus in order to navigate conflicts between the individual and the collective. In this issue, a number of papers engage with moral concepts that are central to different approaches to navigating these conflicts in practical debates. While it may clearly be in the interests of the collective to restrict the transmission of a dangerous infectious pathogen, methods of achieving this aim can be contrary to the interests of the particular individuals targeted by the intervention. Consider quarantine measures; in quarantine, individuals who are merely suspected of carrying …. (shrink)

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue (...) the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

Patient or public involvement in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research, and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus (...) on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research. (shrink)

Contents - Introduction; The Problem of Thomas Hobbes; Formalistic Views of Representation; 'Standing For' - Descriptive Representation; 'Standing For' - Symbolic Representation; Representing as 'Acting For' - The Analogies; The Mandate ...

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)

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)

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 this article, I draw on research carried out in Europe, primarily in Germany, on patients’ and scientists’ perspectives on mitochondrial replacement techniques 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. (shrink)

This paper draws on nearly two decades of research on health consumer and patients’ organizations in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin’s classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs (...) represent their constituencies. We found that policymakers themselves are less concerned with formal mechanisms adopted by groups and are more concerned with credibility, in particular whether HCPOs carry the confidence of their constituents. While some concerns about legitimacy remain, particularly in relation to funding from commercial interests, we argue that HCPOs bring a unique perspective to the policy process and to focus purely on formalistic representation provides only a partial understanding of their representative role and a constrained view of their collective moral claims. (shrink)