In this paper, prediction markets that encourage traders to bet on matters of life and death are used to explore the varieties and dynamics of moral repugnance. We define moral repugnance as morally charged feelings of revulsion that correspond (correctly, incorrectly, and indeterminately) to moral reasons and contexts. Rich variations of moral repugnance and their dynamic qualities are presented by investigating the contextual frames in which they arise. These contextual frames constitute interacting conditions composed of information about states of (...) affairs, moral reasons, and feelings of revulsion. Through careful study of two medical prediction markets that encourage betting on death, we can observe the interaction between these causal conditions to see how the varieties of moral repugnance emerge. We also present three interesting results that arise from analyzing the dynamics of moral repugnance in response to prediction markets. First, a prediction market can elicit several conflicting types of moral repugnance at the same time. Second, moral indeterminacy can arise in two different ways when judging prediction markets. Finally, some prediction markets can generate a moral endogeneity problem, a disruptive feedback loop between a given prediction market and the morally relevant outcome it predicts. (shrink)

'Trade in Health is a timely reflection on the interface of economics with the ethics and public policy facets of the international movement of patients. Health issues such as these are at the forefront of modern political economy."National" health is increasingly less so. Reisman's previous scholarship in this area is brought to bear in an insightful and eminently readable and engaging fashion. In an area where uncovering the facts is more difficult than "decyphering the Dead Sea Scrolls", (...) such a reflective work on the critical aspects of political economy helps to fill a void in considering whether such trade is likely to be in the interests of patients, nations and the global community. In addition to the rosy picture of healthy and wealthy tourists having a sojourn for medical care during a vacation, Reisman is not afraid to tackle the thorny issues concerning trade in organs, eggs and even death, in this sobering and comprehensive volume. It is a rare skill to bring the luminaries of Smith, Marshall, Mill and Confucius to bear on such a contemporary tale! International travel by patients is at the nexus of a revolution in global health. It is driving and affecting aspects of foreign investment, health worker migration and e-health provision. Reisman skilfully links these foundations of health care, and as such provides critical text for consideration by those seeking to build and strengthen future health systems. Trade in Health is an excellent overview. It provides critical insights for those new to the area as well as new information and challenges for those of us involved for a number of years.' - Richard Smith, Professor of Health Ssytem Economics and Dean of Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, UK. Once exports and imports meant agriculture and industry. In the global economy and the electronic age, trade is also expanding into the service sector. This timely book closely examines trade in health. It documents the growth of a cross-national service that in the past was mainly consumed at home. Following from his highly successful book Health Tourism, Professor David Reisman offers a comprehensive and searching multidisciplinary account of the way in which medical services, patients, capital and professionals are making up a global healthcare economy that crosses borders. He reflects on their pursuit of lower prices, better quality and a differentiated product, and suggests that public policy is essential if the ethical capital of interdependent societies is not to be eroded by the international market in health and care. Written in a concise and lucid form, this original book will be of great interest to all people interested in the internationalization of health care. Combining theory and empirical evidence from economics, tourism and medical care, scholars involved in health policy and social administration will find much of significance in this authoritative study. (shrink)

Collective trauma refers to psychological effects that are experienced by a group of people in response to shared traumatic conditions. Farmers represent a unique population that is chronically exposed to potentially traumatic events and conditions particular to the agricultural industry. Farming communities in Iowa have experienced the farm crisis of the 1980s, decades of extreme weather events, rapidly fluctuating markets, trade wars, rising input costs, farm bankruptcies and foreclosures, and high rates of farmer suicides. Exposure to such conditions (...) can potentially have dramatic effects on the people who experience them and the communities they live in. While research exists examining the behavioral health aspects of stress in farmers, no studies have examined the lived experiences of farmers within the framework of collective trauma and its effects on decision-making. To investigate how Iowa farmers perceive their own experiences of these potential types of collective trauma, this study conducted in-depth semi-structured interviews with farmers and farmer-oriented behavioral health experts. Particular focus is placed on how collective trauma affects individual farmers, their families, and their farming communities, as well as how this type of trauma impacts farm management decisions and sustainability outcomes. Qualitative data were analyzed using a grounded theory approach to develop a theoretical framework describing how collective trauma, in the form of environmental, financial, and community threats, impacts farm management decisions and, in turn, affects environmental, economic, and social sustainability outcomes. Potential implications for how agricultural policy can potentially address the effects and systemic causes of trauma are discussed. (shrink)

BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing (...) panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive. (shrink)

Australia does not allow adult smokers to buy or use electronic nicotine delivery systems that contain nicotine without a prescription. This paper critically evaluates the empirical and ethical justifications provided for the policy by Federal and State governments, public health advocates and health organisations. These are: that ENDS should only be approved as products for smoking cessation when there is evidence from randomised controlled trials that they are effective; that as a matter of precaution we should not (...) allow the sale of ENDS to smokers as consumer products because we do not know what their long-term effects will be; and that allowing ENDS to be sold as consumer goods will enable the tobacco industry to market ENDS to young people which will also lead to an increase in youth smoking. We show that the arguments and evidence offered in support of all these claims is very weak. We also argue that even if the evidence were stronger, it would not justify denying adult smokers the right to use ENDS either to quit smoking or as a long-term alternative to smoking cigarettes. We outline ENDS policies that would more ethically address the public health concerns that motivated the current policy by allowing adult smokers to access ENDS for smoking cessation or tobacco harm reduction under tight regulations that discourage commercial promotion and adolescent use. (shrink)

The development of electronic personal health records by independent vendors and national health systems is understood to empower patients and create a new kind of consumerism in healthcare. With more personal health information at hand, active participation in the management of health and rational purchasing of healthcare services will be possible. Healthcare systems will also be able to contain costs and achieve sustainability. Based on a careful examination of the literature, we argue that many of (...) the declared benefits of this technology are rather unattainable. As the boundaries between the public and private healthcare sectors become blurred and as employers struggle to reduce health insurance expenses, this proclaimed ‘consumer empowerment in healthcare’ is an attempt to introduce a technology and a business model for centralising all relevant PHI to render them economic. We reflect on the consequences for the ‘empowered’ user and we suggest that this new market device has to separate and individually address sufficiently issues of privacy, confidentiality and security before it can claim a place in the digital healthcare ecosystem. (shrink)

Amid the action of the 2013 Super Bowl aired the usual array of high-priced advertisements. Most ads were original. Some were unusual. One regional ad, however, seemed distantly familiar. The 30-second commercial promoted the NJOY King electronic cigarette1 to at least 10 million viewers in several major markets. It featured an attractive male model taking a drag from what looks like a cigarette. He then slowly blows smoke to the tune of Foreigner’s “Feels Like the First Time.” Of (...) course, the “smoke” does not come from burning tobacco. Rather, it is the water vapor produced by an e-cigarette as part of its nicotine delivery process. This, however, was not evident from the imagery. For those watching the broadcast, including thousands of minors, NJOY’s advertisement depicted what tobacco companies have not portrayed on television for decades: a person engaged in smoking behavior. (shrink)

From antiquity to the present the ability of clinicians to assure confidentiality has been a cornerstone of practice. Though the expectations and emphases of the various ethical codes and laws concerning confidentiality have evolved over time, it has always been the practitioner’s responsibility to observe them. The use of computers for the generation and storing of individual medical records is a significant change from our current paper-based records. That change makes the security of records a technological problem generally outside the (...) realm of physician knowledge or control. Researchers and vendors first began developing electronic health records (EHRs) in the late 1960s to 1980s. “Peripherals” were .. (shrink)

Global Women's Health Market Size research report offers in-depth assessment of revenue growth, market definition, segmentation, industry potential, influential trends for understanding the future outlook and current prospects for the market. -/- The global women’s health market size was valued at USD 35.02 billion in 2019 and is projected to reach USD 41.05 billion by 2027, exhibiting a CAGR of 3.2% during the forecast period. -/- Drivers & Restraints -/- The global women's health market size stood at (...) USD 35.02 Billion in 2019 and is projected to reach USD 41.05 Billion by 2027, exhibiting at a CAGR of 3.2% in the forecast period -/- This study provides information about the sales and revenue during the historic and forecasted period of (2024 to 2030). Understanding the segments helps in identifying the importance of different factors that aid market growth. Estimations about the CAGR value for specific forecast period, market drivers, market restraints, and competitive strategies are assessed in this Women's Health Market report. -/- This report focuses on Women's Health Market volume and value at the global level, regional level and company level. From a global perspective, this report represents overall Women's Health Market market size by analysing historical data and future prospect. Regionally, this report focuses on several key regions: North America, Europe, Asia-Pacific, Latin America and Middle East and Africa. -/- Competitive Strategic Window: -/- The Competitive Strategic Window analyses the competitive landscape in terms of markets, applications, and geographies to help the vendor define an alignment or fit between their capabilities and opportunities for future growth prospects. It describes the optimal or favorable fit for the vendors to adopt successive merger and acquisition strategies, geography expansion, research & development, and new product introduction strategies to execute further business expansion and growth during a forecast period. -/- An Overview of the Impact of COVID-19 on this Market: -/- The advancement of COVID-19 has conveyed the world to a stop. We fathom that this prosperity crisis amazingly influences associations across ventures. Nevertheless, everything fortunate or unfortunate should reach a conclusion. There are a couple of organizations that are fighting and some are thriving. By and large, essentially every region is relied upon to be impacted by the pandemic. -/- We are advancing incessant endeavors to help your business support and create during COVID-19 pandemics. Considering our experience and expertise, we will offer you an impact examination of Covid episode across ventures to help you with preparing for what's to come. -/- Key players covered in the global Women's Health Market research report: -/- Bayer AG (Leverkusen, Germany) Pfizer Inc. (New York, United States) Amgen Inc. (California, United States) Novartis AG (Basel, Switzerland) Merck & Co., Inc. (New Jersey, United States) Eli Lilly and Company (Indiana, United States) LUPIN (Mumbai, India) AstraZeneca (Cambridge, United Kingdom) Agile Therapeutics (New Jersey, United States) . (shrink)

Electronic Health Records (EHRs) are organized around two kinds of statements: those reporting observations made, and those reporting acts performed. In neither case does the record involve any direct reference to what such statements are actually about. They record not: what is happening on the side of the patient, but rather: what is said about what is happening. While the need for a unique patient identifier is generally recognized, we argue that we should now move to an EHR (...) regime in which all clinically salient particulars – from the concrete disorder on the side of the patient and the body parts in which it occurs to the concrete treatments given – should be uniquely identified. This will allow us to achieve interoperability among different systems of records at the level where it really matters: in regard to what is happening in the real world. It will also allow us to keep track of particular disorders and of the effects of particular treatments in a precise and unambiguous way. We discuss the ontological and epistemological aspects of our claim and describe a scenario for implementation within EHR systems. (shrink)

One of the most significant changes in modern healthcare delivery has been the evolution of the paper record to the electronic health record (EHR). In this paper we argue that the primary change has been a shift in the focus of documentation from monitoring individual patient progress to recording data pertinent to Institutional Priorities (IPs). The specific IPs to which we refer include: finance/reimbursement; risk management/legal considerations; quality improvement/safety initiatives; meeting regulatory and accreditation standards; and patient care delivery/evidence (...) based practice. Following a brief history of the transition from the paper record to the EHR, the authors discuss unintended or contested consequences resulting from this change. These changes primarily reflect changes in the organization and amount of clinician work and clinician‐patient relationships. The paper is not a research report but was informed by an institutional ethnography the aim of which was to understand how the EHR impacted clinicians and administrators in a large, urban hospital in the United States. The paper was also informed by other sources, including the philosophies of Jacques Ellul, Don Idhe, and Langdon Winner. (shrink)

Electronic health record (EHRs) have largely replaced obsolete paper medical charts. This replacement has produced an increased demand on physicians’ time and has compromised efficiency. In an attempt to overcome this perceived obstacle to productivity, physicians turned to medical scribes to perform the work required by EHRs. In doing so, they have introduced an uninvited participant in the physician-patient relationship and compromised patients’ confidentiality. Scribes may be a successful work around for physicians frustrated by EHRs, but patients’ confidentiality (...) should not be sacrificed in the process. (shrink)

PURPOSE—A substantial fraction of the observations made by clinicians and entered into patient records are expressed by means of negation or by using terms which contain negative qualifiers (as in “absence of pulse” or “surgical procedure not performed”). This seems at first sight to present problems for ontologies, terminologies and data repositories that adhere to a realist view and thus reject any reference to putative non-existing entities. Basic Formal Ontology (BFO) and Referent Tracking (RT) are examples of such paradigms. The (...) purpose of the research here described was to test a proposal to capture negative findings in electronic health record systems based on BFO and RT. METHODS—We analysed a series of negative findings encountered in 748 sentences taken from 41 patient charts. We classified the phenomena described in terms of the various top-level categories and relations defined in BFO, taking into account the role of negation in the corresponding descriptions. We also studied terms from SNOMED-CT containing one or other form of negation. We then explored ways to represent the described phenomena by means of the types of representational units available to realist ontologies such as BFO. RESULTS—We introduced a new family of ‘lacks’ relations into the OBO Relation Ontology. The relation lacks_part, for example, defined in terms of the positive relation part_of, holds between a particular p and a universal U when p has no instance of U as part. Since p and U both exist, assertions involving ‘lacks_part’ and its cognates meet the requirements of positivity. CONCLUSION—By expanding the OBO Relation Ontology, we were able to accommodate nearly all occurrences of negative findings in the sample studied. (shrink)

The specific arrangements of power/knowledge that characterize nurse interactions with the electronic health record form a panopticon. As health care moves into the 21st century, sophisticated technologies like the electronic health record shape the terrain of professional possibilities. The longer it is in use, the more it is possible to excavate the inherent disciplinary function of electronic health record. A panopticon is a generalizable, replicable apparatus of power that cultivates discipline when similar behaviours (...) are desired from a group of people. This paper traces the arrangements of power/knowledge that characterize nurse interactions with the electronic health record rooted in a trauma critical care setting. Examining the apparatuses of power/knowledge enforced through panopticism in nursing makes the invisible visible. This in turn enables nurses to address the intended and unintended consequences of the electronic health record. If nurses are to effectively shape the direction of their own futures and the future of health care, nurses will need to unpack the invisible techniques of power such as the electronic health record as a panopticon. In the process of building a visible identity, contextualizing nursing knowledge to better care for patients on the one hand and understand the relationships of power that limit us on the other, nurses are neither apolitical nor powerless. Considering the dialectic of power/knowledge in the healthcare setting helps to illuminate spaces to recharacterize nursing, reveal the contributions and knowledge of nurses, and consolidate the professional power of nurses to affect meaningful change and self‐governance in the healthcare setting. (shrink)

Abstract:Electronic health records (EHRs) offer significant advantages over paper charts, such as ease of portability, facilitated communication, and a decreased risk of medical errors; however, important ethical concerns related to patient confidentiality remain. Although legal protections have been implemented, in practice, EHRs may be still prone to breaches that threaten patient privacy. Potential safeguards are essential, and have been implemented especially in sensitive areas such as mental illness, substance abuse, and sexual health. Features of one institutional model (...) are described that may illustrate the efforts to both ensure adequate transparency and ensure patient confidentiality. Trust and the therapeutic alliance are critical to the provider–patient relationship and quality healthcare services. All of the benefits of an EHR are only possible if patients retain confidence in the security and accuracy of their medical records. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations to sharing objective (...) data in other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 20 Heft: 1 Seiten: 289-292.

: The market success of managed health plans in the 1990s is bringing to medicine the easy availability of electronically stored information that is characteristic of the securities and consumer credit industries. Protection for medical confidentiality, however, has not kept pace with this information revolution. Employers, the managed care industry, and legal and ethics commentators frequently look to the concept of informed consent to justify particular uses of health information, but the elastic use of informed consent as a (...) way of responding to managed health plans' disclosure of information to third parties fails to address underlying questions involving substantive value choices. (shrink)

Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation (...) of the CE chart note. The implementation of the “meaningful use” criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation. (shrink)

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this (...) process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Global Digital Health Market Size research report offers in-depth assessment of revenue growth, market definition, segmentation, industry potential, influential trends for understanding the future outlook and current prospects for the market. -/- Get a Sample Copy of the Report at – -/- The global digital health market size was valued at USD 548.08 billion in 2021 and is projected to grow from USD 742.72 billion in 2022 to USD 4,547.70 billion by 2029, exhibiting a CAGR of 29.5% during (...) the forecast period. Based on our analysis, the global market exhibited a higher growth of 81.2% in 2020 compared to 2019. The global COVID-19 pandemic has been unprecedented and staggering, with digital health experiencing higher-than-anticipated demand across all regions compared to pre-pandemic levels. -/- Drivers & Restraints -/- The global digital health market size stood at USD 452.79 Billion in 2023 and is projected to reach USD 1,965.30 Billion by 2030, exhibiting at a CAGR of 23.3% in the forecast period -/- This study provides information about the sales and revenue during the historic and forecasted period of (2024 to 2030). Understanding the segments helps in identifying the importance of different factors that aid market growth. Estimations about the CAGR value for specific forecast period, market drivers, market restraints, and competitive strategies are assessed in this Digital Health Market report. -/- This report focuses on Digital Health Market volume and value at the global level, regional level and company level. From a global perspective, this report represents overall Digital Health Market market size by analysing historical data and future prospect. Regionally, this report focuses on several key regions: North America, Europe, Asia-Pacific, Latin America and Middle East and Africa. -/- Competitive Strategic Window: -/- The Competitive Strategic Window analyses the competitive landscape in terms of markets, applications, and geographies to help the vendor define an alignment or fit between their capabilities and opportunities for future growth prospects. It describes the optimal or favorable fit for the vendors to adopt successive merger and acquisition strategies, geography expansion, research & development, and new product introduction strategies to execute further business expansion and growth during a forecast period. -/- An Overview of the Impact of COVID-19 on this Market: -/- The advancement of COVID-19 has conveyed the world to a stop. We fathom that this prosperity crisis amazingly influences associations across ventures. Nevertheless, everything fortunate or unfortunate should reach a conclusion. There are a couple of organizations that are fighting and some are thriving. By and large, essentially every region is relied upon to be impacted by the pandemic. -/- We are advancing incessant endeavors to help your business support and create during COVID-19 pandemics. Considering our experience and expertise, we will offer you an impact examination of Covid episode across ventures to help you with preparing for what's to come. -/- Key players covered in the global Digital Health Market research report: -/- General Electric Company (U.S.) Koninklijke Philips N.V. (Netherlands) Allscripts Healthcare, LLC (U.S.) Cerner Corporation (U.S.) Epic Systems Corporation (U.S.) McKesson Corporation (U.S.) Medical Information Technology, Inc. (U.S.) Siemens Healthcare GmbH (Germany) Boston Scientific Corporation (U.S.) FUJIFILM Holdings Corporation (Japan) Medtronic (Ireland) IBM (U.S.) Validic (U.S.). (shrink)

The integration of genetic information (GI) into the electronic health record (EHR) seems inevitable as the mainstreaming of genomics continues. Such newly provided accessibility to GI could be beneficial for improving health care, as well as for supporting clinical decision‐making and health management. Notwithstanding these promising benefits, the automatic integration of GI into the EHR, allowing unrestricted access to one's GI through patient portals, carries various knowledge‐related risks for patients. This article is focused on the potential (...) case of inadvertently revealing misattributed parentage through such practice. The article aims to identify key clinical and ethical implications of such revelation for adult patients. Clinical implications include, for example, altering the physician‐patient interaction and the need to enhance physician's genetic literacy to improve genetic‐information‐specific communication skills. Ethical implications yield arguments supporting disclosure of MP, such as autonomy, individuals' right to know medical information pertaining to them, and the right to know one's genetic origins. Arguments opposing disclosure of MP centre on the right not to know GI and concerns for post‐disclosure family relationships. Following the clinical and ethical analyses of these respective implications, we consider how such integration of GI into the EHR ought to be carried out, ethically. We therefore suggest a solution, featuring an autonomy‐based approach, built around EHR users' right not to know. Our solution of nuanced consent options (including a ‘genetic ignorance option’) is designed to enable patients' informed exposure to GI through the EHR, allowing them some control over their self‐ and familial narrative. (shrink)

For all humans, sexual orientation and gender identity are essential elements of identity, informing how we plan and live our lives. The historic invisibility of sexual minorities in medicine has meant that these important aspects of their identities as patients have been ignored, with the result that these patients have been denied respect, culturally competent services, and proper treatment. Likely due to historic rejection and mistreatment, there is evidence of reluctance on the part of LGBT patients to disclose their sexual (...) orientation (SO) or gender identity (GI) to their health care providers. There is some perception of risk in sharing SO and GI for many patients who have had bad prior experiences. Despite these risks, we argue that we can improve the quality of care provided this population only by encouraging them to self‐identify and then using that information to improve quality of care.One strategy both to prompt patient self‐identification and to store and use SO and GI data to improve care centers on the use of electronic health records. However, gathering SO and GI data in the EHR requires a workforce that knows both how to obtain and how to use that information. To develop these competencies, educational programs for health professionals must prepare students and educators to elicit and to use sexual orientation and gender identity information to improve care while simultaneously ensuring the safety of patients, trainees, and staff and faculty members as SO and GI become openly discussed and integral parts of ongoing medical discussion and care. As determination of SO and GI demographics becomes more common in health research, we will more fully understand the health risks for all the LGBTIQQ populations. (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 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)

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health (...) record system. In this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing. (shrink)

The goal of referent tracking is to create an ever-growing pool of data relating to the entities existing in concrete spatiotemporal reality. In the context of Electronic Healthcare Records (EHRs) the relevant concrete entities are not only particular patients but also their parts, diseases, therapies, lesions, and so forth, insofar as these are salient to diagnosis and treatment. Within a referent tracking system, all such entities are referred to directly and explicitly, something which cannot be achieved when familiar concept-based (...) systems are used in what is called “clinical coding”. In this paper we describe the components of a referent tracking system in an informal way and we outline the procedures that would have to be followed by healthcare personnel in using such a system. We argue that the referent tracking paradigm can be introduced with only minor – though nevertheless ontologically important – technical changes to existing EHR infrastructures, but that it will require a radically different mindset on the part of those involved in clinical coding and terminology development from that which has prevailed hitherto. (shrink)

Use of electronic health records within clinical encounters is increasingly pervasive. The digital record allows for data storage and sharing to facilitate patient care, billing, research, patient communication and quality-of-care improvement—all at once. However, this multifunctionality is also one of the main reasons care providers struggle with the EHR. These problems have often been described but are rarely approached from a philosophical point of view. We argue that a postphenomenological case study of the EHR could lead to more (...) in-depth insights. We will focus on two concepts—transparency and multistability—and translate them to the specific situation of the EHR. Transparency is closely related to an embodiment relation in which the user becomes less aware of the technology: it fades into the background, becoming a means of experience. A second key concept is that of multistability, referring to how a technology can serve multiple purposes or can have different meanings in different contexts. The EHR in this sense is multistable by design. Future EHR design could incorporate multistable information differently, allowing the provider to focus on patient care when interacting with the EHR. Moreover we argue that the use of the EHR in the daily workflow should become more transparent, while awareness of the computer in the specific context of the patient-provider relationship should increase. (shrink)

Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

Despite the recent advances in information and communication technology that have increased our ability to store and circulate information, the task remains of ensuring that the right sorts of information reach the right sorts of people. In what follows we defend the thesis that efforts to develop efficient means for sharing information across healthcare systems and organizations would benefit from a careful analysis of human action in healthcare organizations, and that the communication of healthcare information and knowledge needs to rest (...) on a sound ontology of social interaction. We illustrate this thesis in relation to the HL7 RIM, which is one centrally important tool for communication in the healthcare domain. (shrink)

Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health (...) information for healthcare and research. This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant associations of each explanatory variable with the outcome variable. The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46–0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94]. Consumers’ choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems. (shrink)

For decades, health information has been collected and shared for health care delivery and public health purposes. While the “primary use” of patient data for providing direct health care services is the cornerstone of health care practice, health departments rely on data sharing for research and analysis to support disease prevention and health promotion in the population. As the U.S. health system undergoes a digital revolution, health information that was previously captured (...) in paper form now can be captured electronically. Electronic health information has transformed the efficiency, capacity, and functions of the U.S. health system. For this reason, there is increased attention to the “secondary use” of electronic patient data for public health uses, including disease reporting and investigation, syndromic surveillance, and patient-specific or population-level communications about health conditions and their associated risk factors. Secondary uses may also encompass clinical research, licensure, and payment for services. (shrink)

The American Recovery and Reinvestment Act of 2009 (ARRA) required healthcare providers in the United States to adopt and demonstrate meaningful use of electronic health records (EHRs) by January 1, 2014. In many ways, EHRs mark a notable improvement over paper medical records as they are more easily accessible and allow for electronic searching and sharing of medical history. However, as EHRs have become mandated by ARRA, many nurses now rely upon computers far more heavily during nurse–patient (...) interactions, thereby decreasing the level of direct interpersonal communication between the two. There is evidence that eye contact between nurses and patients positively affects patient satisfaction. Above and beyond the issue of patient satisfaction is the more basic ethical issue of respecting the patient as a person. The author argues that the templates used in electronic health systems have the possibility of eroding the respect for humanity that is the hallmark of nurse–patient relationships, as signalled by the American Nurses Association’s first principle in their Code of Ethics. Using concepts from philosophers Martin Heidegger and Emmanuel Levinas, the author provides guidance as to what an ethical interaction between nurse and patient should look like in an age of EHRs. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information offer improved access to (...) timely information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

Digitization of a health record changes its accessibility. An electronic health record (EHR) can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are ethical issues concerning research using EHRs in the literature? We searched Medline Ovid, Embase and Scopus for publications concerning ethical issues of research use of EHRs. We employed the constant comparative method to retrieve (...) common ethical themes. We descriptively summarized empirical studies. The study reveals the breadth, depth, and complexity of ethical problems associated with research use of EHRs. The central ethical question that emerges from the review is how to manage access to EHRs. Managing accessibility consists of interconnected and overlapping issues: streamlining research access to EHRs, minimizing risk, engaging and educating patients, as well as ensuring trustworthy governance of EHR data. Most of the ethical problems concerning EHR-based research arise from rapid cultural change. The framing of concepts of privacy, as well as individual and public dimensions of beneficence, are changing. We are currently living in the middle of this transition period. Human emotions and mental habits, as well as laws, are lagging behind technological developments. In the medical tradition, individual patient’s health has always been in the center. Transformation of healthcare care, its digitalization, seems to have some impacts on our perspective of health care ethics, research ethics and public health ethics. (shrink)

Referent Tracking (RT) advocates the use of instance unique identifiers to refer to the entities comprising the subject matter of patient health records. RT promises many benefits to those who use health record data to improve patient care. To further the adoption of the paradigm we provide an illustration of how data from an EHR application needs to be decomposed in order to make it accord with the tenets of RT. We describe the ontological principles on which this (...) decomposition is based in order to allow integration efforts to be applied in similar ways to other EHR applications. We find that an ordinary statement from an EHR contains a surprising amount of “hidden” data that are only revealed by its decomposition according to these principles. (shrink)

– Pharmacy sales of over‐the‐counter medicines in the UK represent an economically significant and important mechanism by which customers self‐medicate. Sales are supervised in pharmacies, but this paper seeks to question whether patients' electronic health records – due to be introduced nationally – could be used, ethically, by pharmacists to ensure safe medicines sales., – Using theoretical arguments, three areas of ethical concern are identified and explored in relation to pharmacists' access to EHRs‐consequentialsim, analogies and confidentiality/privacy., – Consequentialist (...) arguments include positive benefits to customer's welfare and control of medicine of abuse, but negative economic healthcare burdens and consequences due to potentially increased or paradoxically, decreased presentation of patients to doctors. Socially accepted analogous practices – credit checks, existing pharmacy access to information and hospital treatment – are then argued to be ethically relevant and supportive of access. Privacy and confidentiality are then considered as reasons not to allow EHR access. A contrasting view is that pharmacy access to EHRs is another form of surveillance and hence the question of pharmacists' assess to EHRs may be answered negatively by empirical research that locates pharmacy customers as expert users and identifies confidentiality and privacy concerns about information technology in healthcare more generally., – This paper offers a unique and valuable contribution to the debate about healthcare professionals' role‐based access to patients' medical records and offers a reflection on the ethical concerns surrounding patient information and the rival concerns of patient qua customer autonomy and safety. (shrink)

Biomedical terminologies are focused on what is general, Electronic Health Records (EHRs) on what is particular, and it is commonly assumed that the step from the one to the other is unproblematic. We argue that this is not so, and that, if the EHR of the future is to fulfill its promise, then the foundations of both EHR architectures and biomedical terminologies need to be reconceived. We accordingly describe a new framework for the treatment of both generals and (...) particulars in biomedical information systems that is designed: 1) to provide new opportunities for the sharing and management of data within and between healthcare institutions, 2) to facilitate interoperability among different terminology and record systems, and thereby 3) to allow new kinds of reasoning with biomedical data. (shrink)

Electronic information is a vital but complex component in the modern health care system, fueling ongoing efforts to develop a universal electronic health record infrastructure. This innovation creates a substantial tension between two desirable values: the increased quality and utility of patient medical records and the protection of the privacy of the information they contain. This article discusses related U.S. legislation, policy, and law—including the Health Insurance Portability and Accountability Act of 1996. This article offers (...) an inclusive, equilibrium model to conceptualize the spectrum of challenge that this interplay of desirable but oppositional values creates. The model illustrates the relationship between information privacy and information flow, and that between individual and society-level needs, within the resulting impact sectors of individual security, health care priorities, public health effectiveness, and e-health development, while specifying beneficial outcomes for each. (shrink)