The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop (...) migrant‐centric ePHR responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe. (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)

Electronic health records for patients, personal health records , have become increasingly popular among policy makers and purchasers, but uptake among patients and physicians has been relatively slow. PHRs have varying uses that might make them more or less appealing to different stakeholders. The three core uses for PHRs — promoting communication, data use, and patient responsibility — each raises a set of potential practical and financial dilemmas. But some ethical concerns are also at (...) play, some of which are rarely recognized as values-based barriers to the use of PHRs. Recognizing these ethical issues, and addressing them explicitly in PHR design and policy making, would help PHRs to achieve their promise. (shrink)

The term “Electronic Health Records” means something different to each of the stakeholders in health care, but it always seems to carry a degree of emotional baggage. Increasingly, EHRs are advertized as a nearly unmitigated good that will transform medical care, improve safety and efficiency, allow better patient engagement, and open the door to an era of cheap, effective, timely, and patient-centered care. Indeed, for some EHR proponents the benefits of adopting them are so obvious that (...) adoption has become an end in itself. But for others — and especially for a number of skeptical practitioners and patients — EHR is a code word that portends the corporate transformation of health care delivery, the loss of patient privacy, the demand that patients bear more responsibility in health care, and the unreflective takeover of the health care system by people who do not understand medical care or how health care relationships unfold. (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)

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)

The unsustainable growth in U.S. health care costs is in large part attributable to the rising costs of pharmaceuticals and medical devices and to unnecessary medical procedures. This fact has led health reform advocates and policymakers to place considerable hope in the idea that increased government support for research on the comparative effectiveness of medical treatments will eventually help to reduce health care expenses by informing patients, health care providers, and payers about which treatments for common (...) conditions are effective and which are not. Comparative effectiveness research has shown in some cases that expensive but commonly used treatments are significantly less effective than relatively inexpensive alternatives. Critics warn, however, that CER will homogenize patient care, limit patient choices, and lead to improper health care rationing and even to the denial of lifesaving treatments. (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 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)

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these (...) are discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework (...) called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (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)

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

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)

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 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)

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)

The “learning health care system” is being heralded as offering great potential for improving the quality and cost-worthiness of medical care by closely integrating the care of patients with the accumulation of aggregate data that can guide evidence-based medicine. By using electronic medical records, routine patient care and administrative data will be available for systematic observational studies. With the aid of these electronic medical records, quality-improvement studies of institutional practices and pragmatic, comparative effectiveness randomized trials (...) of individual treatments could become standard features of the medical care environment in the LHS. In this.. (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)

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)

BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public (...) dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research. (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)

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)

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)

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)

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)

In discussions of health reform, the increased use of health information technology is a common element of nearly every serious proposal on the table. Health IT includes electronic health records kept by providers, personal health records offered by health insurance plans or owned by consumers, and electronic health information exchanges. Although health reform initiatives being discussed contain little detail regarding health IT, in general they promote (...) class='Hi'>health IT to facilitate the electronic sharing of health information to improve individual and population health. During the 2008 presidential campaign, the health care proposals of both President Obama and Senator McCain discussed health IT. President Obama’s proposal invests $50 billion over the next five years to promote the adoption of health IT with privacy safeguards. Senator McCain’s plan also encouraged the adoption of health IT, with an emphasis on coordination. (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)

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)

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.

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)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes (...) in conflict.Moreover, the traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (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)

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)

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information (...) and factors that influence these. A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Results Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Conclusions Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research. (shrink)