Background Trust is an essential phenomenon of relationship between patients and healthcare professionals and can be described as an accepted vulnerability to the power of another person over something that one cares about in virtue of goodwill toward the trustor. This characterization of interpersonal trust appears to be adequate for patients suffering from chronic illness. Trust is especially important in the context of chronic cardiovascular diseases as one of the main global health problems. Research Aim The (...) purpose of the qualitative study was to gain a deeper understanding of how people with chronic cardiovascular disease experience and make sense of trust in healthcare professionals. Research Design Eleven semi-structured interviews with participants analysed using interpretative phenomenological analysis to explore in detail their lived experience of trust as a relational phenomenon. Participants and Research Context Participants with chronic cardiovascular disease were purposively recruited from inpatients on the cardiology ward of the university hospital located in central Slovakia. Ethical Considerations The study was approved by the faculty ethics committee. Participants gave their written informed consent. Findings Four Interrelated Group Experiential Themes Sense of co-existence; Belief in competence; Will to help; Ontological security with eight subthemes were identified. The findings describe the participants' experience with trust in healthcare professionals as a phenomenon of close co-existence, which is rooted in the participants’ vulnerability and dependence on the goodwill and competence of health professionals to help with the consequence of (re)establishing a sense of ontological security in the situation of chronic illness. Conclusion Findings will contribute to an in-depth understanding of trust as an existential dimension of human co-existence and an ethical requirement of healthcare practice, inspire patient empowerment interventions, support adherence to treatment, and person-centred care. (shrink)

‘Trust but verify’ is a translation of a Russian proverb made famous by former US President Ronald Reagan. In their paper, Grahamet alappear to take an alternate view that might be summarised astrust or verify. The contrast highlights a general question: how do we come to trust in authorities? More specifically, Grahamet alclaim: (1) that UK Trusted Research Environments (TREs) are misnamed as future custodians for big health data because their promised verification systems actually negate the uncertainty that (...) trust requires; (2) the public is mistaken if it believes such verification enhances trust; (3) the notion of building public trust in TREs is unclear or misconceived. In response, I propose a more relational, perhaps less reductionist account. I argue (1) that verification is itself a source of uncertainty, so it can’t extinguish the uncertainty needed for trust; (2) it’s nevertheless possible for verification to enhance feelings of trust thereby reducing our needs for the same; (3) trust is also social, even political, meaning institutions like TREs may become too big to fail—and end up shielding their ‘trusted’ brand by being less candid about inevitable flaws in their verification systems. (shrink)

BackgroundThe ability of healthcare to protect sensitive personal data in medical records and registers might influence public trust, which in turn might influence willingness to allow healthcare to use such data. The aim of this study was to examine how the general public’s trust relates to their attitudes towards uses of health data.MethodsA stratified sample from the general Swedish population received a questionnaire about their willingness to share health data. Respondents were also asked about their (...) class='Hi'>trust in the management and protection of electronic health data.ResultsA large majority (81.9%) of respondents revealed high levels of trust in the ability of healthcare to protect electronic patient data. Good health was associated with significantly higher levels of trust compared to bad health. Respondents with low levels of trust were significantly less willing to allow personal data to be used for different purposes and were more inclined to insist on being asked for permission beforehand. Those with low levels of trust also perceived risks of unauthorized access to personal data to be higher and the likely damage of such unauthorized access worse, compared to those with high levels of trust.ConclusionsTrust in the ability of healthcare to protect electronic health is generally high in Sweden. Those with higher levels of trust are more willing to let their data be used, including without informed consent. It thus seems crucial to promote trust in order to be able to reap the benefits that digitalization makes possible through increased access and use of data in healthcare. (shrink)

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)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as providers of medical information and advice. In particular, we discuss that institutional epistemic trust (...) in AI-inclusive healthcare depends, in part, on the reliability of AI-inclusive medical practices and programs, its knowledge and understanding among different stakeholders involved, its effect on epistemic and communicative duties and burdens on medical professionals and, finally, its interaction and alignment with the public’s ethical values and interests as well as background sociopolitical conditions against which AI-inclusive healthcare systems are embedded. To assess the applicability of these conditions, we explore a recent proposal for AI-inclusivity within the Dutch Newborn Screening Program. In doing so, we illustrate the importance, scope, and potential challenges of fostering and maintaining institutional epistemic trust in a context where generating, assessing, and providing reliable and timely screening results for genetic risk is of high priority. Finally, to motivate the general relevance of our discussion and case study, we end with suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (shrink)

COVID-19 continues to spread across the globe at an exponential speed, infecting millions and overwhelming even the most prepared healthcare systems. Concerns are looming that the healthcare systems in low- and middle-income countries are mostly unprepared to combat the virus because of limited resources. The problems in LMICs are exacerbated by the fact that citizens in these countries generally exhibit low trust in the healthcare system because of its low quality, which could trigger a number of (...) uncooperative behaviors. In this paper, we focus on one such behavior and investigate the relationship between trust in the healthcare system and the probability of potential treatment-seeking behavior upon the appearance of the first symptoms of COVID-19. First, we provide motivating evidence from a unique national online survey administered in Armenia–a post-Soviet LMIC country. We then present results from a large-scale survey experiment in Armenia that provides causal evidence supporting the investigated relationship. Our main finding is that a more trustworthy healthcare system enhances the probability of potential treatment-seeking behavior when observing the initial symptoms. (shrink)

Digitalisation of health and the use of health data in artificial intelligence, and machine learning (ML), including for applications that will then in turn be used in healthcare are major themes permeating current UK and other countries’ healthcare systems and policies. Obtaining rich and representative data is key for robust ML development, and UK health data sets are particularly attractive sources for this. However, ensuring that such research and development is in the public interest, produces public benefit and (...) preserves privacy are key challenges. Trusted research environments (TREs) are positioned as a way of balancing the diverging interests in healthcare data research with privacy and public benefit. Using TRE data to train ML models presents various challenges to the balance previously struck between these societal interests, which have hitherto not been discussed in the literature. These challenges include the possibility of personal data being disclosed in ML models, the dynamic nature of ML models and how public benefit may be (re)conceived in this context. For ML research to be facilitated using UK health data, TREs and others involved in the UK health data policy ecosystem need to be aware of these issues and work to address them in order to continue to ensure a ‘safe’ health and care data environment that truly serves the public. (shrink)

In this paper, I explore the concept of corrective trust as a pathway to mitigate biases, and potentially build or restore mutual trust in relationships characterized by power imbalances, particularly within the context of healthcare. Corrective trust takes place when we actively choose to trust others when our initial mistrust or hesitation to trust is due to biases. However, existing accounts of trust as a special form of reliance present challenges to practicing corrective (...) trust. I propose a non-reductive account that construes trust as a basic (i.e. irreducible to more basic concepts such as reliance) but complex (i.e. consists of cognitive, affective, and normative components) attitude, disentangling it from reliance and thus addressing associated challenges. This redefinition enables a deeper understanding of trust and facilitates the application of corrective trust to mitigate biases in healthcare and beyond. (shrink)

Discussion around the increasing use of AI in healthcare tends to focus on the technical aspects of the technology rather than the socio-technical issues associated with implementation. In this paper, we argue for the development of a sustained societal dialogue between stakeholders around the use of AI in healthcare. We contend that a more human-centred approach to AI implementation in healthcare is needed which is inclusive of the views of a range of stakeholders. We identify four key (...) areas to support stakeholder involvement that would enhance the development, implementation, and evaluation of AI in healthcare leading to greater levels of trust. These are as follows: (1) aligning AI development practices with social values, (2) appropriate and proportionate involvement of stakeholders, (3) understanding the importance of building trust in AI, (4) embedding stakeholder-driven governance to support these activities. (shrink)

Health care systems can positively influence our personal decision-making and health-related behavior only if we trust them. I propose a conceptual analysis of the trust relation between the public and a healthcare system, drawing from healthcare studies and philosophical proposals. In my account, the trust relation is based on an epistemic component, epistemic authority, and on a value component, the benevolence of the healthcare system. I argue that it is also modified by the vulnerability (...) of the public on healthcare matters, and by the system’s credibility. I apply my proposed analysis of public trust in health care systems to the phenomenon of vaccine hesitancy, a tendency to question vaccine policies, and to seek alternative vaccine schedules or to refuse vaccination. Understanding the role of trust and its components can be key to understanding the phenomenon. (shrink)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling (...) action. Anthony Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

The centrality of trust in traditional doctor–patient relationships has been criticized as inordinately paternalistic, yet in today's discussions about medical ethics—mostly in response to disruptive innovation in healthcare—trust reappears as an asset to enable empowerment. To turn away from paternalistic trust‐based doctor–patient relationships and to arrive at an empowerment‐based medical model, increasing reference is made to the importance of nurturing trust in technologies that are supposed to bring that empowerment. In this article we stimulate discussion (...) about why the move towards patient empowerment may not be able to keep clear of the criticism of trust in traditional patient–doctor relationships. First, we explore how such a shift in trust dynamics might corrode patient empowerment in the name of patient empowerment. Second, we examine how a translocation of trust may at best push the “trust issue” elsewhere and at worst make it harder to evaluate trustworthiness. (shrink)

What are the criteria for reasonable clinical judgements? The reasonableness of macro-level decision-making has been much discussed, but little attention has been paid to the reasonableness of applying guidelines generated at a macro-level to individual cases. This paper considers a framework for reasonable clinical decision-making that will capture cases where relevant guidelines cannot reasonably be followed. There are three main sections. (1) Individual claims on healthcare from the point of view of concerns about equity are analysed. (2) The demands (...) of responsibility and equity on professional clinical performance are discussed, and how the combination of these demands emerges into seven requirements that constitute the framework is explored. Since this framework is developed to assist in reasonable clinical decision-making, practical implications of all these requirements are also suggested. (3) Challenges concerning the framework are discussed. First, a crucial presumption that the framework relies upon is considered—namely, clinicians’ willingness to justify their decisions as requested. Then how public deliberation may influence clinical decision-making is discussed. Next is a consideration of how clinicians’ need to have confidence in their own judgements in order to perform in a manner worthy of trust would be compatible with adherence to the framework supported by public deliberation. It is concluded that fair distribution in the interplay between macro- and micro-level considerations can be secured by legitimising procedures on each level, by ensuring well-organised and continuing public debate and by basing individual clinical judgements upon well-justified and principled normative bases. (shrink)

This paper develops an account of how the implementation of ML models into healthcare settings requires revising the methodological apparatus of philosophical bioethics. On this account, ML models are cognitive interventions that provide decision-support to physicians and patients. Due to reliability issues, opaque reasoning processes, and information asymmetries, ML models pose inferential problems for them. These inferential problems lay the grounds for many ethical problems that currently claim centre-stage in the bioethical debate. Accordingly, this paper argues that the best (...) way to make progress in remedying these ethical problems is to distil their epistemic core and to identify appropriate epistemic norms as guardrails. The viability of this approach will be highlighted based on four key issues: trust, responsibility, paternalism, and fairness. In that respect, the paper also contributes to a more pronounced view of the specific methodological challenges for ethical theorizing, when the point of reference are complex statistical models that make predictions, rather than individual agents, acting for reasons. (shrink)

This article follows a previous study that has recently been published in Narrare I Gruppi and explored the reasons for the large numeric gap between the regions of the North and South of Italy, referring to the breast cancer screening program adherence rate sponsored by the Italian Healthcare System, that addresses all women living in Italy ranging in age between 48 and 69 years, and proposes a free mammogram every two years. The effectiveness of cancer early detections has been (...) widely demonstrated by medical research; this kind of diagnosis is particularly important in the case of breast cancer. A diagnosis of this form of cancer at its early phases in 97% of cases allows women to survive at least five years after it. However, the different level of trust women feel for healthcare structures is the discriminating element between the North and South of Italy for their access to the screening program. This topic will be thoroughly analyzed by presenting the results of research aimed at evaluating the mean... (shrink)

Background:The nursing community in the Nordic countries has become multicultural because of migration from European, Asian and African countries. In Norway, minority health care providers are recruited in to nursing homes which have become multicultural workplaces. They overcome challenges such as language and strangeness but as a group they are vulnerable and exposed to many challenges.Purpose:The aim is to explore minority healthcare providers, trained nurses and nurses’ assistants, and their experiences of challenges when working in a multicultural team in (...) a Norwegian context.Research method:The study has a qualitative design, using narrative interviews, and a phenomenological–hermeneutic analysis method to explore the experiences of challenges in dementia care.Ethical considerations:The study was approved by The Norwegian Regional Ethics Committee, and the Norwegian Social Science Data Services.Participation and research context:Five informants from different African, Asian and European countries participated in the study. The study was conducted in a Norwegian nursing home, in a dementia care unit.Findings:The results show that minority health care providers experience and find meaning in being a member of a team, they overcome challenges, characterized by the interdependency in the team, appreciating new cultural experiences and striving to belong. They must overcome challenges such as language problems and the feeling of strangeness.Discussion:The findings are discussed considering Løgstrup’s ethic of proximity, the ethical demand of trust, and interdependency. The ethical demand is an answer to a common, transparent, unspoken agreement to be met, seen, and understood.Conclusion:The study shows that cooperation in a multi-professional and multi-ethnic team is important, and secures the quality of care to persons with dementia. Further research is necessary to examine the relation between a multi-ethnic staff and the patients experiencing dementia. Further research is necessary to examine ethnicity, the relation between a multi-ethnic staff, the patients experiencing dementia and next of kin. (shrink)

Taking a phrase from President Clinton’s successful presidential campaign in 1992, this book could have just as easily been called It’s About Trust, Stupid. In his book, David A Shore, PhD, associate dean and founding director of the Trust Initiative at the Harvard School of Public Health, presents a convincing argument for the importance of trust in healthcare delivery.Shore is equally convincing in arguing that people have a lack of trust in the healthcare system (...) in the United States. To make this point, he cites studies showing that while many continue to trust doctors and nurses, the trust in healthcare delivery itself …. (shrink)

The central focus of this research is the fast and crucial impact of the COVID-19 pandemic, and its exceptionally serious consequences in terms of healthcare, state intervention and impositions, radical changes in people’s life, on a crucial psychological, relational, and political construct: trust. In this survey, addressed to 4260 Italian citizens, we tried to analyze and measure such impact, focusing on various aspects of trust. This attention to multiple dimensions of trust constitutes the key conceptual advantage (...) of this research, since trust is a complex and layered construct, with its own internal dynamics. In particular, the analysis focuses on how citizens attribute trust to Public Authorities, in relation to the management of the health crisis: with regard to the measures and guidelines adopted, the purposes pursued, the motivations that determine them, their capacity for involvement and their effectiveness for the containment of the virus itself. A pandemic creates a bilateral need for trust, both in Public Authorities (they have to rely on citizens’ compliance, and must try to promote and maintain their trust in order to be effective), and in citizens, since they need to feel that somebody can do something, can (has the power) to protect them, to act at the needed collective level. We are interested to explore how this need for trust affects the attributional process, regarding both attitudes and the corresponding decisions and actions. The most striking result of this survey is the very high level of institutional trust expressed by respondents: 75% of them trust Italian public authorities to be able to deal with the COVID-19 emergency. This is in sharp contrast with the relatively low levels of institutional trust characteristic of Italy, both historically and in recent surveys. Moreover, the survey allowed to discriminate several potential predictors for trust, thus emphasizing factors that, during this crisis, are exhibiting an anomalous impact on trust. (shrink)

Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic (...) testing company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data. (shrink)

Trust constitutes a fundamental strategy to deal with risks and uncertainty in complex societies. In line with the vast literature stressing the importance of trust in doctor–patient relationships, trust is therefore regularly suggested as a way of dealing with the risks of medical artificial intelligence (AI). Yet, this approach has come under charge from different angles. At least two lines of thought can be distinguished: (1) that trusting AI is conceptually confused, that is, that we cannot (...) class='Hi'>trust AI; and (2) that it is also dangerous, that is, that we should not trust AI—particularly if the stakes are as high as they routinely are in medicine. In this paper, we aim to defend a notion of trust in the context of medical AI against both charges. To do so, we highlight the technically mediated intentions manifest in AI systems, rendering trust a conceptually plausible stance for dealing with them. Based on literature from human–robot interactions, psychology and sociology, we then propose a novel model to analyse notions of trust, distinguishing between three aspects: reliability, competence, and intentions. We discuss each aspect and make suggestions regarding how medical AI may become worthy of our trust. (shrink)

BackgroundThe public’s attitudes to conscientious objection are likely to influence political decisions about CO and trust towards healthcare systems and providers. Few studies examine the pub...

While the technologies that enable Artificial Intelligence (AI) continue to advance rapidly, there are increasing promises regarding AI’s beneficial outputs and concerns about the challenges of human–computer interaction in healthcare. To address these concerns, institutions have increasingly resorted to publishing AI guidelines for healthcare, aiming to align AI with ethical practices. However, guidelines as a form of written language can be analyzed to recognize the reciprocal links between its textual communication and underlying societal ideas. From this perspective, we (...) conducted a discourse analysis to understand how these guidelines construct, articulate, and frame ethics for AI in healthcare. We included eight guidelines and identified three prevalent and interwoven discourses: (1) AI is unavoidable and desirable; (2) AI needs to be guided with (some forms of) principles (3) trust in AI is instrumental and primary. These discourses signal an over-spillage of technical ideals to AI ethics, such as over-optimism and resulting hyper-criticism. This research provides insights into the underlying ideas present in AI guidelines and how guidelines influence the practice and alignment of AI with ethical, legal, and societal values expected to shape AI in healthcare. (shrink)

Social media has transformed how individuals handle their illnesses. While many patients increasingly use these online platforms to understand embodied information surrounding their conditions, healthcare professionals often frame these practices as negative and do not consider the expertise that patients generate through social media. Through a combination of insights from social epistemology and ignorance studies, this paper problematizes the distinctive understandings of social media between patients and healthcare professionals from a different perspective. A total of four ideas are (...) introduced: (1) healthcare professionals see embodied knowledge that arises from patients’ social media practices as uncomfortable knowledge; (2) healthcare professionals engage in several behaviours to preserve their authority and power in front of embodied knowledge created through these online platforms; (3) failing to consider embodied knowledge can have consequences not only in terms of trust between patients and healthcare professionals but also in connection with epistemological populism and the transition towards patient-centred care; and (4) media and digital health literacy could help healthcare professionals enhance the uses of social media in healthcare. Adopting this framework allows not only to offer valuable insights into how healthcare professionals manage patients’ social media practices, but also opens new avenues to improve healthcare digitisation. (shrink)

This paper explores the nature of trust in nurse–patient relationships from the perspective of the patient's trust in the nurse and what might be said to then render such a relationship trustworthy, from the patient's point of view. The paper commences with a general examination of the nature of trust, followed by consideration of the nature of professional–patient relationships in healthcare, with emphasis on nurse– patient relationships in particular. The nature of this relationship is used to (...) provide grounds for arguing, both morally and conceptually, that the nature of patients’ trust in those who nurse them is generally such that for the nurse to respond in a trustworthy way, she must care about her patients, not just for them. In arriving at this conclusion, the paper deliberately restricts its focus to nurse–patient encounters where patients are adults and a relationship, as opposed to a brief engagement between two people, can be said to have taken place. The context for this focus is public sector health care in the United Kingdom. In the text, gendered pronouns referring to doctors, nurses and patients are meant to be inclusive of both sexes. (shrink)

Trust and trustworthiness are essential for good healthcare, especially in mental healthcare. New technologies, such as mobile health apps, can affect trust relationships. In mental health, some apps need the trust of their users for therapeutic efficacy and explicitly ask for it, for example, through an avatar. Suppose an artificial character in an app delivers healthcare. In that case, the following questions arise: Whom does the user direct their trust to? Whether and when (...) can an avatar be considered trustworthy? Our study aims to analyze different dimensions of trustworthiness in the context of mobile health app use. We integrate O'Neill's account of autonomy, trust, and trustworthiness into a model of trustworthiness as a relational concept with four relata: B is trustworthy with respect to A regarding the performance of Z because of C. Together with O'Neill's criteria of trustworthiness (honesty, competence, and reliability), this four-sided model is used to analyze different dimensions of trustworthiness in an exemplary case of mobile health app use. Our example focuses on an app that uses an avatar and is intended to treat sleep difficulties. The conceptual analysis shows that interpreting trust and trustworthiness in health app use is multi-layered and involves a net of interwoven universal obligations. At the same time, O'Neill's approach to autonomy, trust, and trustworthiness offers a normative account to structure and analyze these complex relations of trust and trustworthiness using mobile health apps. (shrink)

In China's healthcare sector, a popular and socio-culturally distinctive phenomenon known as guanxi jiuyi, whereby patients draw on their guanxi with physicians when seeking healthcare, is thriving. Integrating anthropological investigation with normative inquiry, this paper examines medical guanxi through the lens of patient–physician trust and mistrust. The first-hand empirical data acquired – on the lived experiences and perspectives of both patients and physicians – is based on six months' fieldwork carried out in a county hospital in Guangdong, (...) southern China, which included in-depth interviews with 20 patients and 20 medical professionals. Patients who emphasized the positive effects of guanxi on patient–physician trust believed that it facilitates access to experienced medical specialists, enhances clinical communication, and reduces the financial and medical risks of over diagnosis and overtreatment by physicians. At the same time, these findings reveal patients' strong sense of mistrust, not only towards individual health professionals but also to the medical profession and China's commercialized healthcare industry. While some health professionals in the study responded favourably to medical guanxi, most were opposed to it on the grounds that it undermines professional standards and equitable healthcare. We found that the practice of medical guanxi is not morally justifiable, chiefly because it reinforces the present high levels of patient–physician mistrust and erodes trust between patients and the medical profession as a whole. In China, both the medical profession and the state need to promote patient–physician trust based on medical professionalism and institutional norms, rather than on guanxi or individual relationships. (shrink)

The basics -- The dignity of the human person -- Autonomy, consent, refusing treatment and boundaries -- Ethics and non-autonomous patients -- Confidentiality, privacy, data protection, truth telling and trust -- Ethical issues at the beginning of life -- Ethical issues about babies, children and young adults -- Ethical issues at the end of life -- Dying and death: ethical issues -- Loss, grief and bereavement, burn-out and the wounded healer -- Conscientious objection and loyalties.

Bioethics, Volume 36, Issue 2, Page 154-161, February 2022.

This paper focuses on the _ethics of how_ to approach the introduction of MAiD as an organizational ethics challenge, a focus that diverges from the traditional focus in healthcare ethics on the _ethics of why_ MAiD is right or wrong. It describes a method co-designed and implemented by ethics and medical leadership at a tertiary hospital to develop a values-based, grassroots response to the decriminalization of assisted dying in Canada. This organizational ethics engagement method embodied core tenants that drew (...) inspiration from a variety of sources, including poetic ones. These tenants are: make the problem bigger; focus on values; cultivate open moral spaces; and trust emergence. The paper describes how these tenants were put into practice in order to create a rigorous and sustainable MAiD program that delivers high-quality care to patients and families while honoring the moral diversity of the hospital workforce. One of the goals in sharing this method is to provide a roadmap for healthcare organizations in Canada and other jurisdictions around the world that are facing the challenge of responding to patient requests for MAiD following the decriminalization of this care option. (shrink)

Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated (...) with the public willingness to trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data. (shrink)

In this paper, I consider how trust affects the decisions of men who have sex with men (MSM) around using pre-exposure prophylaxis (PrEP) as HIV prevention in their sexual and romantic relationships, and how the use of PrEP affects their relationships with healthcare providers. MSM have to trust their sexual and romantic partners as well as their healthcare providers for PrEP to be successful as a relatively new HIV prevention strategy. This trust includes both interpersonal (...) trust and institutional trust and it is complicated by different kinds of relationship dynamics and the history of prejudice against MSM in healthcare institutions. (shrink)

Low‐back pain can be invalidating physically as well as mentally. Despite professional help to treat and prevent low‐back pain, the pain often persists, and so do the problems related to low‐back pain. An intervention that made it possible for a significant part of patients with low‐back pain to improve health and well‐being raised the question: Why was it possible to help some and not others? The aim of the present paper was to achieve a deeper understanding of factors patients experienced (...) as helpful in professional support related to low‐back pain. This was explored using a hermeneutic‐phenomenological approach while analysing 20 interviews with patients with low‐back pain purposively chosen interviews conducted in relation to the intervention. An analysis was made using Ricoeur's interpretation theory. Data on both positive and negative experiences were read and reflected upon. We found that healthcare professionals’ adoption of a narrative approach facilitating the patient's perspective was perceived as helpful. Patients experienced this as being taken seriously; an experience that could be explained at a deeper, more nuanced level using Heidegger's philosophy. Facilitating the patient's perspective was conditional not only on the professional obtaining access to the patient's perspective but also on understanding and acknowledging the patient's existence. The challenge for healthcare professionals in this respect is to bridge the gap between the consultation's fact‐focused concern with the medical implications of low‐back pain and the patient's concern with the implications low‐back pain has for his or her personal identity and life. Listening to the patient's perspective in itself supports the subjective recovery process, while also supporting the quality of patient‐centred support and strengthening the patient's trust in its helpfulness. (shrink)

Trust is essential in human relationships including those within healthcare. Recent studies have raised concerns about patients’ declining levels of trust. This article will explore the role of trust in decision-making about cardiopulmonary resuscitation (CPR). In this research thirty-three senior doctors, junior doctors and division 1 nurses were interviewed about how decisions are made about providing CPR. Analysis of these interviews identified lack of trust as one cause for poor understanding of treatment decisions and lack (...) of acceptance of medical judgement. Two key implications emerged from the analysis. First, before embarking on a discussion about CPR it is essential to establish trust between the doctor and the patient/family. Secondly, it is essential that the CPR discussion itself does not undermine trust and cause harm to the patient. (shrink)

Restraint is regularly used in somatic healthcare settings, and countries have chosen different paths to regulate restraint in somatic healthcare. One overarching problem when regulating restraint is to ensure that patients with reduced decision-making capacity receive the care they need and at the same time ensure that patients with a sufficient degree of decision-making capacity are not forced into care that they do not want. Here, arguments of justice, trust in the healthcare system, minimising harm and (...) respecting autonomy are contrasted with different national regulations. We conclude that a regulation that incorporates an assessment of patients’ decision-making capacity and considers the patient’s best interests is preferable, in contrast to regulations based on psychiatric diagnoses or regulations where there are no legal possibilities to exercise restraint at all in somatic care. (shrink)

Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded. This (...) kind of epistemic injustice has received limited treatment in bioethics. In this paper, we examine how a climate of distrust in pain management may facilitate what Fricker calls epistemic injustice. We critically interrogate the processes through which pain sufferers are vulnerable to specific kinds of epistemic injustice, such as testimonial injustice. We also examine how healthcare institutions and practices privilege some kinds of evidence and ways of knowing while excluding certain patient testimonies from epistemic consideration. We argue that providers ought to avoid epistemic injustice in pain management by striving toward epistemic humility. Epistemic humility, as a form of epistemic justice, may be the kind disposition required to correct the harmful prejudices that may arise through testimonial exchange in chronic pain management. (shrink)

Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded. This (...) kind of epistemic injustice has received limited treatment in bioethics. In this paper, we examine how a climate of distrust in pain management may facilitate what Fricker calls epistemic injustice. We critically interrogate the processes through which pain sufferers are vulnerable to specific kinds of epistemic injustice, such as testimonial injustice. We also examine how healthcare institutions and practices privilege some kinds of evidence and ways of knowing while excluding certain patient testimonies from epistemic consideration. We argue that providers ought to avoid epistemic injustice in pain management by striving toward epistemic humility. Epistemic humility, as a form of epistemic justice, may be the kind disposition required to correct the harmful prejudices that may arise through testimonial exchange in chronic pain management. (shrink)

The Francis Report into failures of care at Mid Staffordshire NHS Foundation Trust Hospital documented a series of ‘shocking’ systematic failings in healthcare that left patients routinely neglected, humiliated and in pain as the Trust focused on cutting costs and hitting government targets. At present, the criminal law in England plays a limited role in calling healthcare professionals to account for failures in care. Normally, only if a gross error leads to death will a doctor or (...) nurse face the prospect of prosecution. Doctors and nurses caring for patients under the Mental Health Act 1983 and the Mental Capacity Act 2005 may however be prosecuted for wilful neglect of a patient. In the light of the Francis Report, this article considers whether the criminal offence of wilful neglect should be extended to a broader healthcare setting and not confined to mental healthcare. (shrink)

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool’s computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how (...) variability in trust criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As part of a 5-year, multi-institutional Agency for Health Care Research and Quality-funded study, we identify trust criteria for a survival prediction algorithm intended to support clinical decision-making for left ventricular assist device therapy, using semistructured interviews (n=40) with patients and physicians, analysed via thematic analysis. Findings suggest that physicians and patients share similar empirical considerations for trust, which were primarilyepistemicin nature, focused on accuracy and validity of AI/ML estimates. Trust evaluations considered the nature, integrity and relevance of training data rather than the computational nature of algorithms themselves, suggesting a need to distinguish ‘source’ from ‘functional’ explainability. To a lesser extent, trust criteria were also relational (endorsement from others) and sometimes based on personal beliefs and experience. We discuss implications for promoting appropriate and responsible trust calibration for clinical decision-making use AI/ML. (shrink)

Over the past twenty years there has been a shift in medical law and practise to increasingly distrust the judgement of health professionals. An increasing number of codes of conduct, disciplinary bodies, ethics committees and bureaucratic policies now prescribe how health professional and health researchers should act and relate to their patients. The result of this, Mark Henaghan argues, has been to undermine trust and professional judgement in health professionals, while simultaneously failing to trust the patient to make (...) decisions about their care. This book will look at the issue of health professionals and trust comparatively in a number of countries including the USA, Canada, Australia, New Zealand and the UK. The book will show by historical analysis of legislation, case law, disciplinary proceedings reports, articles in medical and law journals and protocols produced by management teams in hospitals, how the shift from trust to lack of trust has happened. Drawing comparisons between situations where trust is respected such as in emergency situations, and where it is not for example routine decisions such as obtaining consent for an anaesthetic procedure, the book shows how this erosion of trust has the potential to dehumanise the special nature of the relationship between healthcare professionals and patients. The effect of this is that the practice of health care is turned into a mechanistic enterprise controlled by "management processes" rather than governed by trust and individual care and judgement. This book will be an invaluable resource for students and scholars of medical law and medical sociology, public policy-makers and a range of associated professionals, from health service managers to medical science and clinical researchers. (shrink)

The COVID‐19 pandemic has shaken the world through its first wave, and we have yet to experience the second wave. Even resourceful countries have failed to adequately prevent epidemics in their country, and for countries like Bangladesh, which already has strained an ineffective healthcare system, the challenges to contain the SARS‐CoV‐2 virus are that much more severe. Due to the scarcity of resources and systematic failures the Bangladeshi people deeply mistrust the healthcare system. The mistrust is further magnified (...) as healthcare providers are hesitant to treat the patients because of the lack of proper protective gear. Physicians have a moral obligation to serve and treat patients; however, they have a moral obligation to protect their families. This dilemma places healthcare providers in situations where they experience moral distress. This article specifically discusses the importance of interpersonal relationships in driving change, using the framework of Responsiveness, while stating the need for complementary systematic change in order to rebuild trust in the Bangladeshi healthcare system. (shrink)

BackgroundWhereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a (...) smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics.MethodsData presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care.ResultsThe key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition.ConclusionThe priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition. (shrink)

The COVID‐19 pandemic has shaken the world through its first wave, and we have yet to experience the second wave. Even resourceful countries have failed to adequately prevent epidemics in their country, and for countries like Bangladesh, which already has strained an ineffective healthcare system, the challenges to contain the SARS‐CoV‐2 virus are that much more severe. Due to the scarcity of resources and systematic failures the Bangladeshi people deeply mistrust the healthcare system. The mistrust is further magnified (...) as healthcare providers are hesitant to treat the patients because of the lack of proper protective gear. Physicians have a moral obligation to serve and treat patients; however, they have a moral obligation to protect their families. This dilemma places healthcare providers in situations where they experience moral distress. This article specifically discusses the importance of interpersonal relationships in driving change, using the framework of Responsiveness, while stating the need for complementary systematic change in order to rebuild trust in the Bangladeshi healthcare system. (shrink)

What are the moral challenges that confront doctors as they manage healthcare institutions? How do we build trust in medical organisations? How do we conceptualize moral action? Based on accounts given by senior doctors from organisations throughout the UK, this book discusses the issues medical leaders find most troubling and identifies the moral tensions they face. Moral Leadership in Medicine examines in detail how doctors protect patients' interests, implement morally controversial change, manage colleagues in difficulty and rebuild (...) class='Hi'>trust after serious medical harm. The book discusses how leaders develop moral narratives to make sense of these situations, how they behave while balancing conflicting moral goals and how they influence those around them to do the right thing in difficult circumstances. Based on empirical ethical analysis, this volume is essential reading for clinicians in leadership roles and students and academics in the fields of healthcare management, medical law and healthcare ethics"--Provided by publisher. (shrink)

Mary Ann Meeker’s article admirably reminds readers that family members are involved in—or “responsively manage”—the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There’s reason to be worried, however, that one explicit aim of the article—to ease the standing anxieties that (...) many clinicians and ethicists have about the reliability of family members as proxy decision makers—will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients’ interests and the actions of professional providers.To determine whether and when such alterations are something to be concerned about, we’ll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients’ interests above those of non-patients—as Meeker’s own results suggest—any strict allegiance to such a framework may be more notional than normative—as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that. (shrink)

Artificial intelligence is changing healthcare and the practice of medicine as data-driven science and machine-learning technologies, in particular, are contributing to a variety of medical and clinical tasks. Such advancements have also raised many questions, especially about public trust. As a response to these concerns there has been a concentrated effort from public bodies, policy-makers and technology companies leading the way in AI to address what is identified as a "public trust deficit". This paper argues that a (...) focus on trust as the basis upon which a relationship between this new technology and the public is built is, at best, ineffective, at worst, inappropriate or even dangerous, as it diverts attention from what is actually needed to actively warrant trust. Instead of agonising about how to facilitate trust, a type of relationship which can leave those trusting vulnerable and exposed, we argue that efforts should be focused on the difficult and dynamic process of ensuring reliance underwritten by strong legal and regulatory frameworks. From there, trust could emerge but not merely as a means to an end. Instead, as something to work in practice towards; that is, the deserved result of an ongoing ethical relationship where there is the appropriate, enforceable and reliable regulatory infrastructure in place for problems, challenges and power asymmetries to be continuously accounted for and appropriately redressed. Data sharing not applicable as no datasets generated and/or analysed for this study. (shrink)