Background In the UK, the solidaristic character of the NHS makes it one of the most trusted public institutions. In recent years, the introduction of data-driven technologies in healthcare has opened up the space for collaborations with private digital companies seeking access to patient data. However, these collaborations appear to challenge the public’s trust in the. Main text In this paper we explore how the opening of the healthcare sector to private digital companies challenges the existing social contract and the (...) NHS’s solidaristic character, and impacts on public trust. We start by critically discussing different examples of partnerships between the NHS and private companies that collect and use data. We then analyse the relationship between trust and solidarity, and investigate how this relationship changes in the context of digital companies entering the healthcare system. Finally, we show ways for the NHS to maintain public trust by putting in place a solidarity grounded partnership model with companies seeking to access patient data. Such a model would need to serve collective interests through, for example, securing preferential access to goods and services, providing health benefits, and monitoring data access. Conclusion A solidarity grounded partnership model will help establish a social contract or licence that responds to the public’s expectations and to principles of a solidaristic healthcare system. (shrink)

In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, on solidarity’s (...) relationship with justice and injustice. In this regard, it is argued (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these ‘general’ insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as—and independently from its contribution to justice—in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals’ engagement with patients to better understand their afflictions. (shrink)

Without trust there is no credible human health research (HHR). This article accepts this truism and addresses a crucial question that arises: how can trust continually be promoted in an ever-changing and uncertain HHR environment? The article analyses long-standing mechanisms that are designed to elicit trust—such as consent, anonymization, and transparency—and argues that these are best understood as trust represented by proxies of trustworthiness, i.e., regulatory attempts to convey the trustworthiness of the HHR system and/or its actors. Often, such proxies (...) are assumed to operate as markers that trust exists or, at least, has not been lost. But, since trust can neither be “built” nor “secured,” this is a precarious assumption. Worryingly, there is no existing theoretical account of how to understand and evaluate these proxies of trustworthiness as part of a trusted HHR ecosystem. To remedy this, the paper argues for a radical reimagining of trust and trustworthiness as performative acts that ought to be understood in relation to each other and by reference to the common values at stake. It is shown that proxies of trustworthiness are the operational tools used to perform trustworthiness. It advocates for a values-based approach to understanding the relationship between trust and trustworthiness. This establishes a strong basis for an evaluative framework for proxies of trustworthiness, i.e., to determine how to perform trustworthiness well. Five common proxies in HHR are scrutinized from a values perspective. The contribution is to provide a far-reaching normative and practical framework by which existing and future proxies of trustworthiness can be identified, assessed, maintained, or replaced in rapidly changing HHR regulatory ecosystems where trust itself is crucial to the success of the entire HHR enterprise. (shrink)

In this article, we develop a non-rights-based argument based on beneficence (i.e., the welfare of individuals and communities) and justice as the disposition to act justly to promote equity in health care resource allocation. To this end, we structured our analysis according to the following main sections. The first section examines the work of Amartya Sen and his equality of capabilities approach and outlines a framework of health care as a fundamental human need. In the subsequent section, we provide a (...) definition of health equity based on the moral imperative to guarantee that every individual ought to have the freedom to pursue health goals and well-being. In the later part of the article, we outline a non-right approach to health care based on three pillars: (1) human flourishing, (2) justice as a disposition not a process, and (3) solidarity. (shrink)

Through users’ cross-system comparative experience engaging with the health systems in Taiwan and other countries, this article probes into their understandings and value judgments and specifically their reasonings for the ‘solidarity with whom?’ question in the health sector solidarity. With the cross-system comparison approach, the study adopted semi-structured interviews with 30 Taiwanese participants who have studied, lived or worked abroad and engaged with the health system in Canada, the USA or the UK. This approach offers the opportunity for one to (...) evaluate the health system in the home country from a relative viewpoint from the host country. The participants suggested that the boundary of Taiwan’s National Health Insurance (NHI) should be as inclusive as possible, covering all legal residents in Taiwan regardless of their status, and that the citizens should share more financial responsibility. The ethical reasons for supporting the NHI include recognizing health sector solidarity among people, considering the coverage as a protection of the human right to health, humanitarian reasons and self-interest. Three archetypes of users emerged from the synthesis: Universalists, Rationalists and Republicans. The cross-system comparative experience makes the participants have more supportive attitudes toward the ideals of health sector solidarity. (shrink)

Moral distress is defined as the inability to act according to one’s own core values. During the COVID-19 pandemic, moral distress in medical personnel has gained attention, related to the impact of pandemic-associated factors, such as the uncertainty of treatment options for the virus and the accelerated pace of deaths. Measures to provide aid and mitigate the long-term pandemic effect on providers are starting to be designed. Yet, little has been said about the moral distress experienced by patients and the (...) relational and additive effect on provider moral distress. Pandemic-associated factors affecting moral distress in patients include the constraining effects of isolation on spiritual and religious traditions as well as the intentional separation of patients from their families. This paper will explore the idea that patients are suffering their own moral distress and further how this impacts the intensity of moral distress experienced by the providers—nurses and physicians. The paucity of research in this area with the implications on patient’s distress, decision making, and distress experienced by providers compels further investigation and analysis. (shrink)