Heath care and public health are typically conceptualized as separate, albeit overlapping, systems. Health care’s goal is the improvement of individual patient outcomes through the provision of medical services. In contrast, public health is devoted to improving health outcomes in the population as a whole through health promotion and disease prevention. Health care services receive the bulk of funding and political support, while public health is chronically starved of resources. In order to reduce morbidity and mortality, policymakers must shift (...) their attention to public health services and to the improved integration of health care and public health. In other words, health care and public health should be treated as two parts of a single integrated health system. Furthermore, in order to maximize improvements in health status, policymakers must consider the impact of all governmental policies on health. (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)

Medical records are documents of tremendous social importance. They have been the subject of much medical and sociological research, in particular regarding validity, accessibility and readability. This paper uses Conversation Analysis to add an aspect to the understanding of medical records that has been missing so far, namely how medical records are produced as interactional accomplishments; specifically, how hospital staff members during meetings conversationally negotiate and reach conclusions, treatment recommendations, and other types of (...) consequential decisions. The process involves four steps: assessing patients, interpreting implications, drawing conclusions, and dictating conclusions on tape. The key finding is that participants throughout the process orient towards a need for consensus, whilst at the same time acknowledging the doctors’ interactional leading roles. This insight can enhance our understanding of medical records in hospital settings as constructed and negotiated realities. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery (...) system would be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery (...) system would be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

This review of issues and research is in two parts: 1) practical problems surrounding patient-held records and 2) ethical arguments for and against patient-held records. We argue that research on patient-held records indicates that there are no substantial practical drawbacks and considerable ethical benefits to be derived from giving patients custody of their medical records.

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. (...) In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the objects of study. (shrink)

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. (...) In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the objects of study. (shrink)

Personal medical information is now bought and sold on the open market. Companies use it to make hiring and firing decisions and to identify customers for new products. The justification for providing such access to medical information is that doing so benefits the public by securing public safety, controlling costs, and supporting medical research. And individuals have supposedly consented to it. But we can achieve the common goods while better protecting privacy by making institutional changes in the (...) way information is maintained and protected. (shrink)

The medical record, as a managerial, historic, and legal document, serves many purposes. Although its form may be well established and many of the cases documented in it routine in medical experience, what is written in the medical record nevertheless records decisions and actions of individuals. Viewed as an interpretive text, it can itself become the object of interpretation. This essay applies literary theory and methodology to the structure, content, and writing style(s) of an actual (...) class='Hi'>medical record for the purpose of exploring the relationship between the forms and language of medical discourse and the daily decisions surrounding medical treatment. The medical record is shown to document not only the absence of a consistent treatment plan for the patient studied but also a breakdown in communication between different health professionals caring for that patient. The paper raises questions about the kind of education being given to house staff in this instance. The essay concludes with a consideration of how such situations might be more generally avoided. (shrink)

Observational research involving access to personally identifiable data in medical records has often been conducted without informed consent, owing to practical barriers to soliciting consent and concerns about selection bias. Nevertheless, medical records research without informed consent appears to conflict with basic ethical norms relating to clinical research and personal privacy. This article analyzes the scope of these norms and provides an ethical justification for research using personally identifiable medical information without consent.

Research drawn from data contained in medical records is a common and immensely important means of scientific investigation in epidemiology and health services research. It provides valuable knowledge regarding risk factors for disease, the safety of pharmaceuticals and medical procedures, and the quality of medical care. Electronic information technology has greatly enhanced the capability of conducting research using medical records, but it has also generated increasing concern about invasions of privacy. Both practical and scientific (...) considerations militate against soliciting consent for population-based observational research. Retrospective review of existing medical records, especially with large samples, poses insuperable barriers to locating human subjects in order to obtain their informed consent. When efforts are made to obtain informed consent for prospective research drawn from disease and treatment registries, mounting evidence has accumulated that substantial selection biases are introduced into the data, as those who consent are not necessarily representative of the population of relevant patients. (shrink)

Introduction: Variation across research ethics boards in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction.Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around (...) a case study with open-ended responses. Interviews were recorded, transcribed and coded manually.Results: Fourteen sites required individual patient consent for the study to proceed as proposed. Three indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites did not require consent. Two suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites required full committee review. Sixteen allowed an external research assistant to abstract information from the health record.Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions. (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)

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)

Despite the recent advances in information and communication technology that have increased our ability to store and circulate information, the task of ensuring that the right sorts of information gets to the right sorts of people remains. We argue that the many efforts underway to develop efficient means for sharing information across healthcare systems and organizations would benefit from a careful analysis of human action in healthcare organizations. This in turn requires that the management of information and knowledge within healthcare (...) organizations be combined with models of resources and processes of patient care that are based on a general ontology of social interaction. The Health Level 7 (HL7) is one of several ANSI-accredited Standards Developing Organizations operating in the healthcare arena. HL7 has advanced a widely used messaging standard that enables healthcare applications to exchange clinical and administrative data in digital form. HL7 focuses on the interface requirements of the entire healthcare system and not exclusively on the requirements of one area of healthcare such as pharmacy, medical devices, imaging or insurance transactions. This has inspired the development of a powerful abstract model of patient care called the Reference Information Model (RIM). The present paper begins with an overview of the core classes of the HL7 (Version 3) RIM and a brief discussion of its “actcentered” view of healthcare. Central to this account is what is called the life cycle of events. A clinical action may progress from defined, through planned and ordered, to executed. These modalities of an action are represented as the mood of the act. We then outline the basis of an ontology of organizations, starting from the theory of speech Acts, and apply this ontology to the HL7 RIM. Special attention is given to the sorts of preconditions that must be satisfied for the successful performance of a speech act and to the sorts of entities to which speech acts give rise (e.g. obligations, claims, commitments, etc.). Finally we draw conclusions for the efficient communication and management of medical information and knowledge within and between healthcare organizations, paying special attention to the role that medical documents play in such organizations. (shrink)

Increasingly, medical records are being stored in computer databases that allow for efficiencies in providing treatment and in the processing of clinical and financial services. Computerization of medical records has also diminished patient privacy and, in particular, has increased the potential for misuse, especially in the form of nonconsensual secondary use of personally identifiable records. Organizations that store and use medical records have had to establish security measures, prompted partially by an inconsistent patchwork (...) of legal standards that vary from state to state. There is widespread appreciation among policy makers regarding the need for legal reform. The Health Information and Portability Accountability Act of 1996 mandated that the Administration develop regulations regarding the control of medical records. The Administration has offered regulations from the Department of Health and Human Services. Survey data reveal what healthcare professionals who have access to sensitive medical records believe are the greatest threats to patients' privacy. The overlap between Administration proposals and the responses of healthcare professionals is striking. (shrink)

What do the terms sex and gender identity, or gender history, mean in a medical context? When does it matter to a healthcare professional whether a patient has male or female reproductive biology?...

Current law does not adequately protect patients' privacy or their medical records. Proposals to computerize these records could further erode confidentiality unless new federal laws are enacted.

Norway provides total social welfare coverage for organ transplantations, including free immunosuppressive medication and prepaid life-long follow up for both recipients and donors. Despite these benefits the proportion of living kidney donors has in recent years declined from around 40% of all kidney transplantations to 24%. This study suggests harnessing patient- and donor-narratives as a tool for addressing the current fall in donation rates. The hospital records of 18 recipient/donor dyads were compared with patient and donor accounts elicited in (...) semi-structured interviews. Narratives afford a pertinent supplement to the primarily biomedical and technical information stored in medical records. Even in condensed form, the messages embedded in narratives contribute to a ‘thicker’ understanding of the complexity of living kidney donation -decisions. Narratives represent a source of education for referring-nephrologists wishing to deepen their evaluation skills and avoid making decisions based on insufficient insight into patients’ and potential donors’ values and life-situation. Recipients’ and donors’ unedited accounts of their motivations, worries, doubts and expectations afford a revealing and edifying supplement to the primarily biomedical and technical information stored in medical records. In narratives, the predicaments and dilemmas surrounding LKD become visible and debatable and can serve as support for future donors, recipients and the nephrologists responsible for evaluation–conclusions. Generating narratives raises a number of practical, epistemic and normative challenges. (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.

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)

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)

Modern Western medical individualism has had a significant impact on health care in China. This essay demonstrates the ways in which such Western-style individualism has been explicitly endorsed in China’s 2010 directive: The Basic Norms of the Documentation of the Medical Record. The Norms require that the patient himself, rather than a member of his family, sign each informed consent form. This change in clinical practice indicates a shift toward medical individualism in Chinese healthcare legislation. Such individualism, (...) however, is incompatible with the character of Chinese familism that is deeply rooted in the Chinese ethical tradition. It also contradicts family-based patterns of health care in China. Moreover, the requirement for individual informed consent is incompatible with numerous medical regulations promulgated in the past two decades. This essay argues that while Chinese medical legislation should learn from relevant Western ideas, it should not simply copy such practices by importing medical individualism into Chinese health care. Chinese healthcare policy is properly based on Chinese medical familist resources. (shrink)

Medicine is often thought of as a science of the body, but it is also a science of data. In some contexts, it can even be asserted that data drive health. This article focuses on a key piece of data technology central to contemporary practices of medicine: the medical record. By situating the medical record in the perspective of its history, we inquire into how the kinds of data that are kept at sites of clinical encounter often depend (...) on informational requirements that originate well outside of the clinic, in particular in health insurance records systems. Although this dependency of today's electronic medical records on billing requirements is widely lamented by clinical providers, its history remains little studied. Following the archaeology of medicine developed by Michel Foucault in The Birth of the Clinic and expanding his methodology in light of more recent contributions to the field of media archaeology, this article excavates some of the underexplored technological conditions that help constitute today's electronic medical record. If in some contexts, it is true that data drive health, then an archaeology of medical records helps reveal how health insurance records often impact clinical care and, by extension, health and disease. (shrink)

Formal tools are attributed central roles in organizing work within many modern workplaces. How should one comprehend the power of these tools? Taking the medical record as an example, this article builds on recent calls to overcome the dichotomy between the formal and the informal and proposes an understanding of the generative power of such tools that does not attribute mythical capacities to either tool or human work. To do so, it is important to look both at the history (...) offormal tools and to their real-time use in concrete work practices. These steps toward a sociology of the formal are crucial for a more comprehensive understanding and evaluation offormal systems in practice. (shrink)