Health authorities increasingly request that general practitioners use information and communication technologies such as electronic patient records for accountability purposes. This article deals with the use of EPRs among general practitioners in Britain. It examines two ways in which GPs use the EPR for accountability purposes. One way is to generate audit reports on the basis of the information that has been entered into the record. The other is to let the computer intervene in the clinical process (...) through prompts. The article argues that GPs' ambivalence toward using the EPR makes them active in finding ways that turn the EPR into a meaningful tool for them, that is, a tool that helps them provide what they see as good care. The article's main contribution is to show how accountability and autonomy are coproduced; less professional autonomy does not follow from more requests to document one's work. Instead, new forms of autonomy are produced in the sociotechnical network that is made up by health policy and local engagements with patients and technology. (shrink)

Modelling nursing activities: electronic patient records and their discontents A fully integrated and operating EPR in a clinical setting is hard to find: most applications can be found in outpatient or general practice settings or in isolated hospital wards. In clinical work practice problems with the electronic patient record (EPR) are frequent. These problems are at least partially due to the models of health care work embedded in EPRs. In this paper we will argue that (...) these problems are at least partially due to the models of health care work embedded in current EPRs. We suggest that these models often contain projections of nurses’ and doctors’ work as it should be performed on the ward, rather than depicting how work is actually performed. We draw upon sociological insights to elucidate the fluid and pragmatic nature of healthcare work and give recommendations for the development of an empirically based EPR, which can support the work of nurses and other health care providers. We argue that these issues are of great importance to the nursing profession, since the EPR will help define the worksettings of the future. Since it is a tool that will impact the development of the nursing profession, nurses have and should have a stake in its development. (shrink)

BackgroundElectronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to (...) identify the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain.MethodsTo identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology.ResultsThe medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters ‘privacy’, ‘autonomy’, ‘risk/benefit’, ‘human relationships’, and ‘responsibility’. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved.ConclusionsWhile there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns. (shrink)

BackgroundThis manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care.MethodsDevelopment of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The (...) underlying assumption behind the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application.ResultsThe framework is divided into two parts: context and core functions. The first part ‘context’ entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR ‘core functions’ of data collection, data access, and digitally-enabled healthcare.ConclusionsThe primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge. (shrink)

In the last two decades we have witnessed considerable efforts directed towards making electronic healthcare records comparable and interoperable through advances in record architectures and (bio)medical terminologies and coding systems. Deep semantic issues in general, and ontology in particular, have received some interest from the research communities. However, with the exception of work on so-called ‘controlled vocabularies’, ontology has thus far played little role in work on standardization. The prime focus has been rather the rapid population of terminologies (...) at the level of fine detail. In this paper, we argue that more efforts are needed on the side of both research and standardization to ensure that the coding systems used in electronic healthcare records enjoy a semantics that is coherent with the semantics of the record. We propose realist ontology as a method to bring about this coherence by means of a robust system of top-level ontological categories. (shrink)

The use of wireless, electronic, medical records and communications in the prehospital and disaster field is increasing. Objective: This study examines the role of wireless, electronic, medical records and com- munications technologies on the quality of patient documentation by emergency field responders during a mass-casualty exercise.

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)

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)

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)

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)

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)

ZusammenfassungIn einem Modellprojekt soll durch die Einführung einer persönlichen, einrichtungsübergreifenden, elektronischen Patientenakte nicht nur die Behandlungskontinuität verbessert, sondern auch das Recht auf informationelle Selbstbestimmung dahingehend realisiert werden, dass jeder Patient zum Administrator einer Datencloud gemacht wird, die alle seine Gesundheitsdaten enthält. Eine systematische Literaturrecherche zum Thema „elektronische Patientenakten “ soll mögliche ethische Herausforderungen in Verbindung mit der oben genannten PEPA antizipieren. Von initial 2487 Publikationen wurden 51 Publikationen ausgewertet: 30 empirische Studien, 10 medizinethische Analysen und 11 Meinungspapiere. In den (...) empirischen Studien wurden als erste Effekte einer EPA vor allem eine vollständigere medizinische Aktenlage beschrieben. Mit der Einsichtsmöglichkeit für den Patienten in die EPA konnten zusätzlich ein besseres Krankheitsverständnis und damit erhöhte Compliance des Patienten nachgewiesen werden. Eine Verbesserung der Behandlungsqualität wurde auf die Fehlervermeidung durch Patienteneinsicht, effektivere Nutzung der Arzt-Patienten-Besuche und das verbesserte Verständnis für das Therapiekonzept zurückgeführt. Ebenfalls wurde in den Studien eine Stärkung des Vertrauensverhältnisses von Arzt und Patient beschrieben. Bedenken gab es im Vorfeld vieler Studien hinsichtlich des Datenschutzes, eines möglichen Verlustes der persönlichen Arzt-Patienten-Beziehung und einer potentiellen Überforderung des Patienten. In der Beurteilung der EPA spielte die Abwägung zwischen ärztlicher Fürsorge und Patientenautonomie eine große Rolle. Die von medizinethischer Seite geäußerten Bedenken bezüglich eines Vertrauensverlustes oder einer Störung des Arzt-Patienten-Verhältnisses konnten in den empirischen Studien nicht bestätigt werden. Die befürchteten Risiken im Datenschutz wurden von den Betroffenen zugunsten des potentiellen Nutzens einer EPA abgewogen. Unter Wahrung des Datenschutzes hat daher die PEPA das Potential, durch die Mitbeteiligung des Patienten das Arzt-Patienten-Verhältnis positiv zu beeinflussen. Die spezifischen ethischen Herausforderungen, die mit der Co-Verwaltung der PEPA einhergehen, werden im Modellprojekt untersucht. (shrink)

*The views expressed are the author's own and should not be construed as representing the policies and opinions of the American Medical Association.

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.

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)

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)

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)

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)

Because of difficulty processing the electronic medical record data of patients with cerebrovascular disease, there is little mature recognition technology capable of identifying the named entity of cerebrovascular disease. Excellent research results have been achieved in the field of named entity recognition, but there are several problems in the pre processing of Chinese named entities that have multiple meanings, of which neglecting the combination of contextual information is one. Therefore, to extract five categories of key entity information for diseases, (...) symptoms, body parts, medical examinations, and treatment in electronic medical records, this paper proposes the use of a BERT-BiGRU-CRF named entity recognition method, which is applied to the field of cerebrovascular diseases. The BERT layer first converts the electronic medical record text into a low-dimensional vector, then uses this vector as the input to the BiGRU layer to capture contextual features, and finally uses conditional random fields to capture the dependency between adjacent tags. The experimental results show that the F1 score of the model reaches 90.38%. (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)

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)

Often a physician’s first introduction to a patient is not a physical encounter but a review of their chart. A glaring “violence risk” flag in an Electronic Medical Record (EMR) is often noticeable...

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)

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)

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an (...) ethical policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data. (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)

At present, most of the research in the field of medical-assisted diagnosis is carried out based on image or electronic medical records. Although there is some research foundation, they lack the comprehensive consideration of comprehensive image and text modes. Based on this situation, this article proposes a fusion classification auxiliary diagnosis model based on GoogleNet model and Bi-LSTM model, uses GoogleNet to process brain computed tomographic images of ischemic stroke patients and extract CT image features, uses Bi-LSTM model (...) to extract the electronic medical record text, integrates the two features using the full connection layer network and Softmax classifier, and obtains a method that can assist the diagnosis from two modes. Experiments show that the proposed scheme on average improves 3.05% in accuracy compared to individual image or text modes, and the best performing GoogleNet + Bi-LSTM model achieves 96.61% accuracy; although slightly less in recall, it performs better on F1 values, and has provided feasible new ideas and new methods for research in the field of multi-model medical-assisted diagnosis. (shrink)

There is growing interest in the use of technology to enhance the tracking and quality of clinical information available for patients in disaster settings. This paper describes the design and evaluation of the Wireless Internet Information System for Medical Response in Disasters (WIISARD).

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)

We note a range of interesting and challenging points which take forward the discourse around the ethics of sharing patient data. Of most note are criticisms of our jury recruitment and methods; questioning how we can engender trust and support from the wider, uninformed public when we only have the view of a small informed public; asking what work needs to be done to ethically transfer data from a clinical care setting to that of research; suggesting that dynamic consent (...) with opt-outs could be an avenue for allowing patients more control over the use of their medical data for research; and asking how we bridge from ‘is’ to ‘ought’. The first criticisms to be addressed focus on the recruitment and methods of our jury, raised by Carter.1 She suggests that the selection of participants, using a population distribution of responses to a data-sharing question, resulted in a jury too positively oriented to data sharing at the outset. Further, she suggests that we counted individual votes rather than allowing the jury to come to a collective position, that jurors were not asked to prioritise the common good, that we present a lack of data from the jury’s deliberations, and as a result, there is a difficulty with evaluating the reasoning and authenticity of deliberation. Regarding recruitment of our jury, our stated aim, which we acknowledge is not shared by all juries, was to achieve a sample which broadly matched what we would expect if …. (shrink)

My aim in this paper is to give a philosophical analysis of the relationship between contingently available technology and the knowledge that it makes possible. My concern is with what specific subjects can know in practice, given their particular conditions, especially available technology, rather than what can be known “in principle” by a hypothetical entity like Laplace’s Demon. The argument has two parts. In the first, I’ll construct a novel account of epistemic possibility that incorporates two pragmatic conditions: responsibility and (...) practicability. For example, whether subjects can gain knowledge depends in some circumstances on whether they have the capability of gathering relevant evidence. In turn, the possibility of undertaking such investigative activities depends in part on factors like ethical constraints, economical realities, and available technology. In the second part of the paper, I’ll introduce “technological possibility” to analyze the set of actions made possible by available technology. To help motivate the problem and later test my proposal, I’ll focus on a specific historical case, one of the earliest uses of digital electronic computers in a scientific investigation. I conclude that the epistemic possibility of gaining access to scientific knowledge about certain subjects depends (in some cases) on the technological possibility for making responsible investigations. (shrink)

Confidentiality of health information is increasingly relevant in the era of electronic medical records. We discuss the case of a hospitalized patient who requested a neurology consultation for an episode he described as an “LSD-like” flashback. The patient expressed concern that the episode was a residual effect of past drug use, but subsequently requested that his drug use not be documented. Involved in a custody battle, he feared that if his records were released to the (...) court he could lose custody of his children. Ethical concerns arose with regards to the physician’s competing obligations with a duty to record information accurately and honestly, respect patient autonomy, and maintain patient confidentiality. We discuss the decision of the team to document the patient’s drug use by arguing that the obligation to maintain confidentiality did not supersede the primary role of the medical record as a complete and accurate account, which cannot be altered at a patient’s behest. (shrink)

To one side of the wide third-floor hallway of Victoria College, just outside the offices of the Institute for the History and Philosophy of Science and Technology, lies the massive carcass of a 1960s-era electron microscope. Its burnished steel carapace has lost its gleam, but the instrument is still impressive for its bulk and spare design: binocular viewing glasses, beam control panel, specimen tray, and a broad work surface. Edges are worn, desiccated tape still feebly holds instructive reminders near control (...) dials; this was once a workhorse in some lab. But it exists now out of time and place; like many of the scientific instruments we study, it has not been touched by knowing hands in decades. (shrink)

Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding (...) and remembering their treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated. (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)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this (...) country continues to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)