Patient data is used to drive an ecosystem of advanced digital tools in health care, like predictive models or artificial intelligence‐based decision support. Patients themselves, however, receive little information about these technologies or how they affect their care. This raises important questions about patient trust and continued engagement in a health care system that extracts their data but does not treat them as key stakeholders. This essay explores these tensions and provides steps forward (...) for health systems as they design advanced health information‐technology (IT) policies and practices. It centers patients, their concerns, and the ways they perceive trustworthiness to reframe advanced health IT in service of patient interests. (shrink)

Large-scale data systems are increasingly envisioned as tools for justice, with big data analytics offering a key opportunity to advance health equity. Health systems face growing public pressure to collect data on patient “social factors,” and advocates and public officials seek to leverage such data sources as a means of system transformation. Despite the promise of this “data-driven” strategy, there is little empirical work that examines big data in action directly within (...) the sites of care expected to transform. In this article, I present a case study on one such initiative, focusing on a large public safety-net health system’s initiation of sexual orientation and gender identity data collection within the clinical setting. Drawing from ethnographic fieldwork and in-depth interviews with providers, staff, and administrators, I highlight three main challenges that elude big data’s grasp on inequality: provider and staff’s limited understanding of the social significance of data collection; patient perception of the cultural insensitivity of data items; and clinic need to balance data requests with competing priorities within a constrained time window. These issues reflect structural challenges within safety-net care that big data alone are unable to address in advancing social justice. I discuss these findings by considering the present data-driven strategy alongside two complementary courses of action: diversifying the health professions workforce and clinical education reform. To truly advance justice, we need more than “just data”: we need to confront the fundamental conditions of social inequality. (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)

The United States health care industry is the second largest in the world, expending an estimated 479 million metric tons (MMT) of carbon dioxide per year, nearly 8 percent of the country's total emissions. The importance of carbon reduction in health care is slowly being accepted. However, efforts to “green” health care are incomplete since they generally focus on buildings and structures. Yet hospital care and clinical service sectors contribute the most carbon dioxide (...) within the U.S. health care industry, with structures/equipment and pharmaceuticals ranking as the third and fourth highest emitters in the industry. Given the magnitude of health care carbon emissions—and the paucity of attention to the carbon of hospital care and clinical services—this essay identifies overuse of health care as a health threat with serious ethical implications, offers a data‐driven action plan for carbon reduction in health care, and provides practical suggestions for more sustainable health care delivery in the United States. (shrink)

In the Netherlands, current policy opinion emphasizes demand-driven health care. Central to this model is the view, advocated by some Dutch health policy makers, that patients should be encouraged to be aware of and make use of health quality and health outcomes information in making personal health care provider choices. The success of the new health care system in the Netherlands is premised on this being the case. After a literature (...) review and description of the new Dutch health care system, the adequacy of this demand-driven health policy is tested. The data from a July 2005, self-administered questionnaire survey of 409 patients (response rate of 94%) as to how they choose a hospital are presented. Results indicate that most patients did not choose by actively employing available quality and outcome information. They were, rather, referred by their general practitioner. Hospital choice is highly related to the importance a patient attaches to his or her physician’s opinion about a hospital. Some patients indicated that their hospital choice was affected by the reputation of the hospital, by the distance they lived from the hospital, etc. but physician’s advice was, by far, the most important factor. Policy consequences are important; the assumptions underlying the demand-driven model of patient health provider choice are inadequate to explain the pattern of observed responses. An alternative, more adequate model is required, one that takes into account the patient’s confidence in physician referral and advice. (shrink)

Since uncertainty is a major challenge in medicine and bears the risk of causing incorrect diagnoses and harmful treatment, there are many efforts to tackle it. For some time, AI technologies have been increasingly implemented in medicine and used to reduce medical uncertainties. What initially seems desirable, however, poses challenges. We use a multimethod approach that combines philosophical inquiry, conceptual analysis, and ethical considerations to identify key challenges that arise when AI is used for medical certainty purposes. We identify several (...) challenges. Where AI is used to reduce medical uncertainties, it is likely to result in (a) patients being stripped down to their measurable data points, and being made disambiguous. Additionally, the widespread use of AI technologies in health care bears the risk of (b) human physicians being pushed out of the medical decision-making process, and patient participation being more and more limited. Further, the successful use of AI requires extensive and invasive monitoring of patients, which raises (c) questions about surveillance as well as privacy and security issues. We outline these several challenges and show that they are immediate consequences of AI-driven security efforts. If not addressed, they could entail unfavorable consequences. We contend that diminishing medical uncertainties through AI involves a tradeoff. The advantages, including enhanced precision, personalization, and overall improvement in medicine, are accompanied by several novel challenges. This paper addresses them and gives suggestions about how to use AI for certainty purposes without causing harm to patients. (shrink)

To accelerate the adoption of a new method with a high potential to replace or extend an existing, presumably less accurate, medical scoring system, evaluation should begin days after the new concept is presented publicly, not years or even decades later. Metaphorically speaking, as chameleons capable of quickly changing colors to help their bodies adjust to changes in temperature or light, health-care decision makers should be capable of more quickly evaluating new data-driven insights and tools and (...) should integrate the highest performing ones into national and international care systems. Doing so is essential, because it will truly save the lives of many individuals. (shrink)

Various kinds of consumer-driven reforms have been attempted over the last 20 years in an effort to rein in soaring costs of health care in the United States. Most are based on a theory of moral hazard, which holds that patients will over-utilize health care services unless they pay enough for them. Although this theory is a basic premise of conventional health insurance, it has been discredited by actual experience over the years. While ineffective (...) in containing costs, increased cost-sharing as a key element of consumer-driven health care leads to restricted access to care, underuse of necessary care, lower quality and worse outcomes of care. This paper summarizes the three major problems of U.S. health care urgently requiring reform and shows how cost-sharing fails to meet that goal. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues associated with (...) environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

This paper conducts a comparative analysis of data governance mechanisms concerning the secondary use of health data in Taiwan and the European Union (EU). Both regions have adopted distinctive approaches and regulations for utilizing health data beyond primary care, encompassing areas such as medical research and healthcare system enhancement. Through an examination of these models, this study seeks to elucidate the strategies, frameworks, and legal structures employed by Taiwan and the EU to strike a (...) delicate balance between the imperative of data-driven healthcare innovation and the safeguarding of individual privacy rights. This paper examines and compares several key aspects of the secondary use of health data in Taiwan and the EU. These aspects include data governance frameworks, legal and regulatory frameworks, data access and sharing mechanisms, and privacy and security considerations. This comparative exploration offers invaluable insights into the evolving global landscape of health data governance. It provides a deeper understanding of the strategies implemented by these regions to harness the potential of health data while upholding the ethical and legal considerations surrounding its secondary use. The findings aim to inform best practices for responsible and effective health data utilization, particularly in the context of medical AI applications. (shrink)

In his State of the Union address on January 31, 2006, President George W. Bush asserted: “for all Americans, we must confront the rising cost of care, strengthen the doctor-patient relationship, and help people afford the insurance coverage they need.” Soon thereafter, the White House National Economic Council released a summary of President Bush's plans for health care reform. The Bush plan argues that increased consumer control over health care purchasing decisions will go a long (...) way to solving America's health care woes. By making patients more value-conscious consumers, the Bush Administration hopes to reduce costs, improve quality and increase competition within the health care sector.The problem of rising health care costs is not new. In fact, President Bush's statement could have come from any American President in the last fifty years. (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)

The American Journal of Bioethics, Volume 11, Issue 7, Page 16-18, July 2011.

In the era of precision medicine and expanding health information technologies, large representative datasets are considered necessary for addressing health inequities. Partially in response to gro...

The role of churches in primary health care delivery in Africa's poor contexts is widely acknowledged. Discussion of churches' work in health largely focuses on the spiritual side and tends to downplay the practical side. A clear challenge and gap in the role of churches in primary health delivery is the lack of clear models and approaches to determine the efficacy of the interventions. Hence, the role of churches as a player in the delivery of primary (...) health care needs examination. This paper examines the role of church-driven primary health care, using a practical case study of the health work of the Salvation Army in East Africa. It outlines the primary health services rendered by the Salvation Army and deduces five models that emerged from the work of the various implementing churches in delivering primary health care. The article proceeds from an analysis of the meaning of primary health care and how churches are historically and currently positioned to contribute to primary health care. The article demonstrates that, viewed from a primary health care delivery perspective, churches in Africa play a critical practical contribution further to a spiritual role. From a practical theology perspective, the paper provides insight into how churches could operate in communities within the interface of church and health spaces. However, the church's role and function is organic and differs in every community. (shrink)

The UK Government’s Code of Conduct for data-driven health and care technologies, specifically artificial intelligence -driven technologies, comprises 10 principles that outline a gold-standard of ethical conduct for AI developers and implementers within the National Health Service. Considering the importance of trust in medicine, in this essay I aim to evaluate the conceptualisation of trust within this piece of ethical governance. I examine the Code of Conduct, specifically Principle 7, and extract two positions: a (...) principle of rationally justified trust that posits trust should be made on sound epistemological bases and a principle of value-based trust that views trust in an all-things-considered manner. I argue rationally justified trust is largely infeasible in trusting AI due to AI’s complexity and inexplicability. Contrarily, I show how value-based trust is more feasible as it is intuitively used by individuals. Furthermore, it better complies with Principle 1. I therefore conclude this essay by suggesting the Code of Conduct to hold the principle of value-based trust more explicitly. (shrink)

The UK Government’s Code of Conduct for data-driven health and care technologies, specifically artificial intelligence -driven technologies, comprises 10 principles that outline a gold-standard of ethical conduct for AI developers and implementers within the National Health Service. Considering the importance of trust in medicine, in this essay I aim to evaluate the conceptualisation of trust within this piece of ethical governance. I examine the Code of Conduct, specifically Principle 7, and extract two positions: a (...) principle of rationally justified trust that posits trust should be made on sound epistemological bases and a principle of value-based trust that views trust in an all-things-considered manner. I argue rationally justified trust is largely infeasible in trusting AI due to AI’s complexity and inexplicability. Contrarily, I show how value-based trust is more feasible as it is intuitively used by individuals. Furthermore, it better complies with Principle 1. I therefore conclude this essay by suggesting the Code of Conduct to hold the principle of value-based trust more explicitly. (shrink)

Medical-legal partnerships connect legal advocates to healthcare providers and settings. Maintaining effectiveness of medical-legal partnerships and consistently identifying opportunities for innovation and adaptation takes intentionality and effort. In this paper, we discuss ways in which our use of data and quality improvement methods have facilitated advocacy at both patient (client) and population levels as we collectively pursue better, more equitable outcomes.

Big data techniques, data-driven science and their technological applications raise many serious ethical questions, notably about privacy protection. In this paper, we highlight an entanglement between epistemology and ethics of big data. Discussing the mobilisation of big data in the fields of biomedical research and health care, we show how an overestimation of big data epistemic power – of their objectivity or rationality understood through the lens of neutrality – can become ethically (...) threatening. Highlighting the irreducible non-neutrality at play in big data tools, we insist upon the ethical importance of a critical epistemological approach in which big data are understood as possibly valuable only when coupled with human intelligence and evaluative rationality. (shrink)

Background: The concept of digital twins has great potential for transforming the existing health care system by making it more personalized. As a convergence of health care, artificial intelligence, and information and communication technologies, personalized health care services that are developed under the concept of digital twins raise a myriad of ethical issues. Although some of the ethical issues are known to researchers working on digital health and personalized medicine, currently, there is no (...) comprehensive review that maps the major ethical risks of digital twins for personalized health care services. Objective: This study aims to fill the research gap by identifying the major ethical risks of digital twins for personalized health care services. We first propose a working definition for digital twins for personalized health care services to facilitate future discussions on the ethical issues related to these emerging digital health services. We then develop a process-oriented ethical map to identify the major ethical risks in each of the different data processing phases. Methods: We resorted to the literature on eHealth, personalized medicine, precision medicine, and information engineering to identify potential issues and developed a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. Developers of a digital twin for personalized health care service may use this map to identify ethical risks during the development stage in a more systematic way and can proactively address them. Results: This paper provides a working definition of digital twins for personalized health care services by identifying 3 features that distinguish the new application from other eHealth services. On the basis of the working definition, this paper further layouts 10 major operational problems and the corresponding ethical risks. Conclusions: It is challenging to address all the major ethical risks that a digital twin for a personalized health care service might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist the developers of digital twins for personalized health care services in analyzing ethical risks in a more systematic manner. (shrink)

Through hypothetical scenarios, this paper analyses whether machine learning (ML) could resolve one of the main shortcomings present in Christopher Boorse’s Biostatistical Theory of health (BST). In doing so, it foregrounds the boundaries and challenges of employing ML in formulating a naturalist (i.e., prima facie value-free) definition of health. The paper argues that a sweeping dataist approach cannot fully make the BST truly naturalistic, as prior theories and values persist. It also points out that supervised learning introduces circularity, (...) rendering it incompatible with a naturalistic perspective. Additionally, it underscores the need for pre-existing auxiliary theories to assess results from unsupervised learning. It emphasizes the importance of understanding the epistemological entanglements between data and data processing methods to manage expectations about what data patterns can predict. In conclusion, the paper argues against delegating the final authority for defining complex concepts like health to AI systems, as it necessitates ethical judgment and capacities for deliberation that AI currently lacks. It also warns against granting creators and deployers of AI systems the discretionary authority to determine these definitions outside the wider social discussion, advocating for ongoing public engagement on normative notions. Failure to do so risks limiting individuals and collectives’ ability to shape a just digital future and diminishes their fundamental epistemic agency. (shrink)

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are (...) differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field. (shrink)

Comparative effectiveness research (CER) is one of the Patient Protection and Affordable Care Act's significant initiatives that aims to improve treatment outcomes and lower health care costs. This article takes CER a step further and suggests a novel clinical application for it. The article proposes the development of a national framework to enable physicians to rapidly perform, through a computerized service, medically sound personalized comparisons of the effectiveness of possible treatments for patients' conditions. A treatment comparison for (...) a given patient would be based on data from electronic health records of a cohort of clinically similar patients who received the treatments previously and whose outcomes were recorded. This framework has unique potential to simultaneously improve the quality of health care, reduce its cost, and alleviate public concerns about rationing and “one size fits all” medicine. (shrink)

Artificial Intelligence (AI) contributes to common goods and common harms in our everyday lives. In light of the Collingridge dilemma, information about both the actual and potential harm of AI is explored and myths about AI are dispelled. Catholic health care is then presented as being in a unique position to exert its influence to model the use of AI systems that minimizes the risk of harm and promotes human flourishing and the common good.

Client-provider relationships have significant effects on how individuals comprehend their life situation during chronic disease and illness. Yet, little is known about how frontline health care providers (HCPs) influence client’s identity formation through meaning-making with clients such as HIV-positive women living in poverty. This requires ethical consideration of the meanings made between clients and providers about client’s health and well-being, both individually and in the larger society. Health care providers (N = 15) and married women (...) living with HIV (N = 33) in north-central India engaged in separate intensive interviews providing narrative data which were analysed using a conceptual framework crossing Lipsky’s street-level bureaucracy theory (Lipsky 2010) with meaning-making processes. HCPs and women construct meanings of women’s role as caregivers that impact women’s sense of identity, health, and well-being. Findings indicate that despite being well-intentioned, HCPs inadvertently reinforce rigid gender norms and convey that women’s worth is tied to their familial caregiving role. HCPs’ discretionary advocacy may also reinforce societal images of women as incapable and needy, thereby harming them more generally. Attention to the gender-sensitive training of HIV health care providers may assure that discretion is ethically interrogated to promote gender equity and enhance women’s access to social welfare services. (shrink)

This study presents a first assessment of the challenges faced by Dutch health care providers dealing with the increasing cultural diversity in Dutch society. Qualitative interviews with 24 Dutch caregivers and policy-makers point to a number of important difficulties encountered when confronted with the growing diversity of patient populations. The study focuses explicitly on the challenges health care providers perceive in their direct interactions with patients. On the basis of the observations of the 24 respondents five (...) strategies were formulated to improve the delivery of care in a multicultural environment. Their findings were further evaluated by confronting the empirical data with care-ethical notions (attentiveness, responsibility, competence, and responsiveness) and intercultural communication-theory. (shrink)

This study presents a first assessment of the challenges faced by Dutch health care providers dealing with the increasing cultural diversity in Dutch society. Qualitative interviews with 24 Dutch caregivers and policy-makers point to a number of important difficulties encountered when confronted with the growing diversity of patient populations. The study focuses explicitly on the challenges health care providers perceive in their direct interactions with patients. On the basis of the observations of the 24 respondents five (...) strategies were formulated to improve the delivery of care in a multicultural environment. Their findings were further evaluated by confronting the empirical data with care-ethical notions (attentiveness, responsibility, competence, and responsiveness) and intercultural communication-theory. (shrink)

Moral case deliberation is a dialogue among health care professionals about moral issues in practice. A trained facilitator moderates the dialogue, using a conversation method. Often, the facilitator is an ethicist. However, because of the growing interest in MCD and the need to connect MCD to practice, healthcare professionals should also become facilitators themselves. In order to transfer the facilitating expertise to health care professionals, a training program has been developed. This program enables professionals in (...) class='Hi'>health care institutions to acquire expertise in dealing with moral questions independent of the expertise of an ethicist. Over the past 10 years, we developed a training program with a specific mix of theory and practice, aiming to foster the right attitude, skills and knowledge of the trainee. The content and the didactics of the training developed in line with the philosophy of MCD: pragmatic hermeneutics, dialogical ethics and Socratic epistemology. Central principles are: ‘learning by doing’, ‘reflection instead of ready made knowledge’, and ‘dialogue on dialogue’. This paper describes the theoretical background and the didactic content of the current training. Furthermore, we present didactic tools which we developed for stimulating active learning. We also go into lessons we learned in developing the training. Next, we provide some preliminary data from evaluation research of the training program by participants. The discussion highlights crucial aspects of educating professionals to become facilitators of MCD. The paper ends with concluding remarks and a plea for more evaluative evidence of the effectiveness and meaning of this training program for doing MCD in institutions. (shrink)

In the early 1970s, Congress considered enacting comprehensive privacy legislation, but it was unable to do so. In 1974, it passed the Privacy Act, applicable only to information in the possession of the federal government. In the intervening years, other information privacy laws enacted by Congress, such as the Health Insurance Portability and Accountability Act, have been weak and sector specific. With the explosion of information technology and the growing concerns about an absence of effective federal privacy laws, the (...) legal focus has shifted to the states. Signaling a new direction in state data privacy and consumer protection law, the California Consumer Privacy Act establishes important rights and protections for California residents with regard to the collection, use, disclosure, and sale of their personal information. The CCPA is certain to spur similar legislation and to affect national and international businesses that collect data from California's residents. Understanding the new law is important for all data‐driven industries, including health care. (shrink)

This article investigates what notions of “just health care” are found at three Swedish hospitals among health care personnel and whether these notions are relevant to what priorities are actually made. Fieldwork at all three hospitals and 114 in-depth interviews were conducted. Data have been subject to conceptual and ethical analysis and categorisation. According to our findings, justice is an important idea to health care personnel at the studied hospitals. Two main notions of (...) just health care were found. The main idea was the notion of “equal treatment according to need”, the basic idea being that differences in treatment should be justified by differences in needs. The competing idea that merit should affect the treatment received is occasionally encountered, the idea here being that patients, by acting irresponsibly, may no longer deserve to be treated strictly according to needs. In practice, priorities are made on grounds that only partly comply with the basic idea of justice in health care, as it is understood by staff at the studied hospitals. Exceptions are made due to regional differences, considerations of cost-effectiveness, economic incentives, tradition, the daily patient flow, research, private alternatives, patient influence and favouritism of health care personnel. (shrink)

One of the core problems of scientific research authorship is honorary authorship. It violates the ethical principle of clear and appropriate assignment of scientific research contributions. The prevalence of honorary authorship worldwide is alarmingly high across various research disciplines. As a result, many academic institutions and publishers were trying to explore ways to overcome this unethical research practice. The International Committee of Medical Journal Editors (ICMJE) recommended criteria for authorship as guidance for researchers submitting manuscripts to biomedical Journals. However, despite (...) the ICMJE guidelines, honorary authorship is still significantly present across various health research disciplines. The aim of this study was to explore the perceptions and knowledge of health care researchers towards honorary authorship according to the ICMJE guidelines across different health care fields in Jordan, which to our knowledge was never explored before. Data from an electronic survey that was distributed among researchers working in different healthcare fields across several major universities in Jordan, revealed that most of the respondents were assistant professors working mainly in the schools of Medicine and Pharmacy. The majority of the respondents (65.5%) were not aware of the ICMJE authorship guidelines. And, around 37% reported the inclusion of an honorary author, in which the most common non-authorship task reported by 73% of the respondents was reviewing the manuscript. Our findings emphasize the need for national academic and research institutions to address the issue of authorship in their educational programs and internal policies. (shrink)

The popularity and availability of global health experiences has increased, with organizations helping groups plan service trips and companies specializing in “voluntourism,” health care professionals volunteering their services through different organizations, and medical students participating in global health electives. Much has been written about global health experiences in resource poor settings, but the literature focuses primarily on the work of health care professionals and medical students. This paper focuses on undergraduate student involvement in (...) short term medical volunteer work in resource poor countries, a practice that has become popular among pre-health professions students. We argue that the participation of undergraduate students in global health experiences raises many of the ethical concerns associated with voluntourism and global health experiences for medical students. Some of these may be exacerbated by or emerge in unique ways when undergraduates volunteer. Guidelines and curricula for medical student engagement in global health experiences have been developed. Guidelines specific to undergraduate involvement in such trips and pre-departure curricula to prepare students should be developed and such training should be required of volunteers. We propose a framework for such guidelines and curricula, argue that universities should be the primary point of delivery even when universities are not organizing the trips, and recommend that curricula should be developed in light of additional data. (shrink)

The Affordable Care Act is an essential first step toward making health insurance more affordable for lower and moderate income Americans. It has accomplished historic reductions in the proportion of Americans who are uninsured. The number of Americans reporting delaying medical care for financial reasons has declined by approximately one-third since 2010. Medicaid expansions, in particular, have significantly reduced financial burdens and accompanying anxieties experienced by low-income Americans in states that have embraced this opportunity. Consistent with these (...) finding, one recent analysis of credit report data finds that Medicaid expansion was associated with between a $600 and $1000 decline in collection balances among individuals who gained coverage. Notwithstanding these gains, premiums and cost-sharing are still too high for many Americans. And cost-sharing has continued to edge higher for the majority of Americans who have coverage through employer-based plans. Measures to address these challenges must build on the ACA to provide greater protection to millions of Americans and to address continued dissatisfaction with our health care financing system among middle-income Americans. (shrink)

It is widely acknowledged that trust plays an important role for the acceptability of data sharing practices in research and healthcare, and for the adoption of new health technologies such as AI. Yet there is reported distrust in this domain. Although in the UK, the NHS is one of the most trusted public institutions, public trust does not appear to accompany its data sharing practices for research and innovation, specifically with the private sector, that have been introduced (...) in recent years. In this paper, we examine the question of, what is it about sharing NHS data for research and innovation with for-profit companies that challenges public trust? To address this question, we draw from political theory to provide an account of public trust that helps better understand the relationship between the public and the NHS within a democratic context, as well as, the kind of obligations and expectations that govern this relationship. Then we examine whether the way in which the NHS is managing patient data and its collaboration with the private sector fit under this trust-based relationship. We argue that the datafication of healthcare and the broader ‘health and wealth’ agenda adopted by consecutive UK governments represent a major shift in the institutional character of the NHS, which brings into question the meaning of public good the NHS is expected to provide, challenging public trust. We conclude by suggesting that to address the problem of public trust, a theoretical and empirical examination of the benefits but also the costs associated with this shift needs to take place, as well as an open conversation at public level to determine what values should be promoted by a public institution like the NHS. (shrink)

This article investigates the claims and complexities involved in the platform-based economics of health and fitness apps. We examine a double-edged logic inscribed in these platforms, promising to offer personal solutions to medical problems while also contributing to the public good. On the one hand, online platforms serve as personalized data-driven services to their customers. On the other hand, they allegedly serve public interests, such as medical research or health education. In doing so, many apps employ (...) a diffuse discourse, hinging on terms like “sharing,” “open,” and “reuse” when they talk about data extraction and distribution. The analytical approach we adopt in this article is situated at the nexus of science and technology studies, political economy, and the sociology of health and illness. The analysis concentrates on two aspects: datafication and commodification. We apply these analytical categories to three specific platforms: 23andMe, PatientsLikeMe, and Parkinson mPower. The last section will connect these individual examples to the wider implications of health apps’ data flows, governance policies, and business models. Regulatory bodies commonly focus on the safety and security of apps, but pay scarce attention to health apps’ techno-economic governance. Who owns user-generated health data and who gets to benefit? We argue that it is important to reflect on the societal implications of health data markets. Governments have the duty to provide conceptual clarity in the grand narrative of transforming health care and health research. (shrink)

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise (...) the right by leading to injustices and affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)

Bayes’ rule shows how one might rationally change one’s beliefs in the light of evidence. It is the foundation of a statistical method called Bayesianism. In health care research, Bayesianism has its advocates but the dominant statistical method is frequentism. There are at least two important philosophical differences between these methods. First, Bayesianism takes a subjectivist view of probability (i.e. that probability scores are statements of subjective belief, not objective fact) whilst frequentism takes an objectivist view. Second, Bayesianism (...) is explicitly inductive (i.e. it shows how we may induce views about the world based on partial data from it) whereas frequentism is at least compatible with non-inductive views of scientific method, particularly the critical realism of Popper. Popper and others detail significant problems with induction. Frequentism’s apparent ability to avoid these, plus its ability to give a seemingly more scientific and objective take on probability, lies behind its philosophical appeal to health care researchers. However, there are also significant problems with frequentism, particularly its inability to assign probability scores to single events. Popper thus proposed an alternative objectivist view of probability, called propensity theory, which he allies to a theory of corroboration; but this too has significant problems, in particular, it may not successfully avoid induction. If this is so then Bayesianism might be philosophically the strongest of the statistical approaches. The article sets out a number of its philosophical and methodological attractions. Finally, it outlines a way in which critical realism and Bayesianism might work together. (shrink)

Humanitarian health care practitioners working outside familiar settings, and without familiar supports, encounter ethical challenges both familiar and distinct. The ethical guidance they rely upon ought to reflect this. Using data from empirical studies, we explore the strengths and weaknesses of two ethical models that could serve as resources for understanding ethical challenges in humanitarian health care: clinical ethics and public health ethics. The qualitative interviews demonstrate the degree to which traditional teaching and values (...) of clinical health ethics seem insufficient for addressing all the realities of health care practice during humanitarian missions. They equally suggest that greater good orientations of public health ethics can thwart the best intentions of health care professionals wanting to attend to the interests of individual patients. Even though neither is complete on its own for helping guide health professionals on field missions, taken together these models have much to offer. At the same time, the narratives of the humanitarian health care workers illustrate how some of the crucial differences between public health ethics and clinical ethics generate tensions in humanitarian health practice. We offer an analysis of some of the complexities this creates for humanitarian health care ethics, and consider ways of adjudicating between the two models. (shrink)