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Who owns a patient's medical information? The patient, the provider, or the insurer? All of the above? None of the above? In the emerging era of electronic medical records, no legal question is more critical, more contested, or more poorly understood. Ownership was never much in doubt in an age of paper-based records, but now that information can be easily digitized and freed from any particular storage medium, confusion reigns. How this issue is resolved can determine how or whether massive anticipated developments in electronic health records will take shape. The respective property rights of patients, providers, and insurers will strongly influence, if not determine, what form of electronic health-record interchange will predominate. And, whether rights to access and use of medical information can be commercialized may determine whether effective, comprehensive medical information networks can emerge at all in the absence of an overt government mandate. This chapter analyzes property rights in medical information from the perspective of network economics. It proposes that patients be allowed to monetize their access and control rights by assigning them to a trusted and regulated intermediary who may then place those rights in a stream of commerce that determines their value and best use. The funds generated can then be distributed both to patients and providers in order to encourage their creation and use of interconnected electronic records.

This chapter covers the use of medical records and other types of records, diaries, and proxy respondents in exposure measurement in epidemiology. For each of these methods, topics covered include the advantages and limitations of the method, sources of error and quality control procedures specific to the method. For records, careful design of the record abstraction form, precise definition of terms, and abstractor training should reduce error. The accuracy of diary information can be enhanced by use of multiple diary days spread over a sufficient time period, and by careful training of subjects and coders. There is substantial error and item non-response in data provided by proxy respondents. For studies which use proxy respondents, close relations of the index subjects should be selected as the proxies, and proxies should be used for some (or all) controls as well.

This chapter examines GroupCare Hospital's disciplinary program for its doctors. Just as GroupCare worked to convince patients that each member's well-being was consistent with the optimization of the membership's health, so it sought to convince physicians that their submission to the organization's disciplinary authority was in the interests both of patients and of physicians themselves and that an efficient, rationalized delivery of care was synonymous with health care quality. Doctors were encouraged to treat individuals while at the same time keeping an eye on the interests of the membership in the aggregate. The chapter first considers doctors' understandings of their work at GroupCare, with particular emphasis on the notion of autonomy, before discussing two technologies through which GroupCare sought to bring doctors into line with the prerogatives of the organization as a whole: electronic medical records and patient satisfaction surveys.

Brief office visits pose a clear challenge to the delivery of effective healthcare. Keeping the information–motivation–strategy model in mind, this chapter reviews how a division of labor among members of the healthcare team and the utilization of technology can help make the most of medical interactions. It is not enough to simply have appropriate staffing; well-defined goals for individual team members, adequate training, and effective communication are all crucial to the efficient functioning of the healthcare team. A productive medical encounter can be promoted with pre-appointment counseling and a careful setting of the agenda for the visit. Interactive health communication systems (such as for obtaining test results or modifying appointments) along with things such as electronic medical records can dramatically increase the efficiency of the medical interaction. Technology can also be used to create virtual support groups, to provide follow-up, and to encourage adherence; some of the benefits and hazards associated with these technologies are reviewed.

This chapter deals with the issue of documentation, which was an area of concern in the stage-one interviews. Examining the issues of culpability, documentation, confidentiality, and the medical record is important, as it is through the written patient record that medical complaints become integrated in medical discourse, through research and the acknowledgement of clinical practice. There are a number of issues that relate both directly and indirectly to the use of medical records, including: the use of medical records in training; legal discourses; as an event itself within the medical encounter; as representative of the hierarchy which exists between different healthcare professionals; naming; recording; and the appropriation of the sick role.

Occupational health services in industry provide health care and preventive services in order to maintain the health of all employees, not just to provide medical care for the injured or those who have been made ill by a hazard. Thus, occupational health services may be divided into curative, or treatment-oriented, and preventive services. Occupational health services may be located in the plant, or off site. A corporate medical department usually coordinates occupational health throughout the enterprise. There should be a written occupational health policy that spells out the responsibility of employers for the health of workers and the responsibility of workers to report problems. Enterprises with more than 1000 workers usually need a full-time, in-house corporate medical department. This department should have a close working relationship with safety and occupational hygiene departments and they are often combined. It is generally better that the occupational health service not be managed under the department of human resources or personnel, where hiring and termination decisions are made and insurance claims are managed. Occupational health and safety must ultimately be the responsibility of supervisors and managers in production and they must be held accountable for injuries and avoidable hazards in the work areas they manage, with support from the occupational health service. The occupational health service has to be seen by the workers as neutral and working for their interests, not as looking for ways to fire them or to deny their claims. Occupational health services should maintain detailed records on the personal health of workers and should keep them strictly confidential. Workers’ compensation is a form of insurance that is compulsory for employers in many countries.

This chapter evaluates how young adults with chronic disease and their parents interact with their medical records. It analyzes how medical information is stored, who is involved in record keeping, and what information is kept and shared among the different constituencies. It argues that mothers play a central role in the medical record management of adolescents with chronic diseases and explains that parent-maintained home-based records serve as a linking pin in a heterogeneous health care information environment.

This chapter analyses the different kinds of information generated by patient-consumer groups and the uses to which they were put. The first section of this chapter considers the purpose and meaning of information for patient-consumer organisations during the late 1980s and early 1990s. The second section of this chapter goes on to look at the activities of patient-consumer organisations both in terms of facilitating access to existing sources of information and in generating new kinds of information. The final section of this chapter assesses the long-running campaign by patient-consumer groups and others to introduce legislation that would allow patients to see their medical records. This chapter suggests that through their information-related activities, patient-consumer organisations were aiming to do more than create a ‘super-patient’ akin to the ‘super-shopper’: they wanted to promote collective as well as individual empowerment by helping patient-consumers as a whole to become better informed.

A variety of subjective and objective methods of exposure measurement are used in epidemiology. They include personal interviews, self-administered questionnaires, diaries of behaviour, reference to records, physical or chemical measurements on the subject, physical or chemical measurements in the environment and, infrequently, direct observation of the subject's behaviour. The issues that must be considered in choosing a method for a particular study are outlined. In addition to costs, the choice of a method is influenced by the type of study to be undertaken, the amount of detail required by the study's objectives, the frequency and impact of the exposure on the subjects' lives, the sensitivity of the topic, the variability in the level of exposure over time, and the accuracy of the methods that are available to measure the specific exposure of interest. The choice among face-to-face interview, telephone interview, and self-administered questionnaire is dealt with in detail.

As the digital revolution takes hold, historians have begun to reflect on the ways in which paper technologies – the codex, notebook, printed book and their indexes, annotations and tools of ordering – have come into being and contributed to the production of knowledge. Objects that were once considered evidence for historical inquiry have become their subjects.1 The same reflexivity applies to notions of evidence, observation and objectivity, often labelled as facts and data, which have themselves been historically studied. This chapter is about what happens when historians use digital technologies to understand paper technologies. It draws on my work to digitise one of the largest surviving sets of medical records in history, a series of 80,000 seventeenth-century astrological cases bound in sixty-four thick volumes. I call this the Casebooks Project. This work, as this chapter explains, is an experiment in the history of medicine and digital humanities.3 It uses new digital technologies to understand what were, in the seventeenth century, new paper technologies. Questions of evidence and its representation and analysis are central to this endeavour.

Electronic health information technologies and the Internet are playing increasing roles in health care and the ways that patients obtain information about their conditions and options for care. This chapter reviews how these electronic sources are used by health care consumers and makes a case that these information technologies could offer potentially enormous benefits to persons with disabilities. Despite this, persons with disabilities may confront obstacles to accessing information through electronic sources and to sorting through voluminous information to evaluate its accuracy and utility. The chapter reviews guidelines about how clinicians and their patients might safely and effectively communicate via secure Internet portals.

This chapter examines the ethical issues surrounding research on medical records without informed consent. Electronic information technology has significantly enhanced the capability of conducting research using medical records, but it has also generated increasing concern about invasions of privacy. Two separate but converging ethical norms call into question the common practice of medical records research without informed consent. First is the principle that clinical research involving competent adults ethically requires their informed authorization. Second is the right of an individual to control access to private information about him/her, especially sensitive medical information obtained in the course of standard medical care. Investigators who obtain access to medical records for the purposes of observational research without the consent of human subjects appear to violate both of these norms. Given that research ethics demands respect for the rights of research subjects, the question is how this practice can be justified. This chapter also considers the role of institutional review boards in reviewing protocols for medical records research as well as the relevance of public opinion to the issue of research on medical records without informed consent.

This chapter describes paradigmatic office visits for an older patient. These visits are short, driven by the concern with physicians to perform well on quality indicators and on the demands of electronic medical records. They seldom address issues such as falls, memory loss, or incontinence and they rarely incorporate features of a geriatric assessment.

In an article in Nature entitled “Iceland's Doctors Rebuffed in Health Data Row,” Allison Abbott discussed how the Icelandic Medical Association (IMA) had failed to reach agreement with deCODE Genetics over Iceland's new national health sector database, which was to be run by the company. The dispute centred on the plan for automatic inclusion of patients' medical records in the anonymized database. The IMA was insisting that informed consent was necessary for the database—people had to actively opt in—while deCODE continued to insist that the “presumed consent” the company had made sure was in the Health Sector Database legislation was sufficient. Do your own due diligence: a mantra for the era of promising genomics. But no matter how much diligence you did, there would still be some debt due on the negotiation of this presumedXconsent.

In this chapter the core thesis of the book is outlined. This proposes that healthcare can be fruitfully viewed as a cluster of negotiated and interrelated moral orders, a deeper understanding of which is required to explain the difficulties associated with implementing EHRs, especially at a national level. Moral orders can be seen as an integral aspect of the division of labour in healthcare and the reciprocal relationships that develop over time among healthcare providers, administrators, citizens, and the state. They embody core values and serve to legitimate and provide justification for the distribution of key rights and responsibilities that enable healthcare systems to function and develop. It is argued that it is the challenge to moral orders which is at the heart of the problems plaguing the implementations of shareable electronic records.

A truly person-centered curriculum requires important changes to how the clinical method is taught. Medical interviewing demands explicit instruction in how the spoken language works and specific strategies that elevate the status of attentive listening so that this aspect is seen as important as the more mechanical aspects of traditional communication skills training. The term chief complaint is declared outdated and suggestions for its replacement are offered. The medical record is considered an important educational instrument, and recommendations are made so that it is in service of functional assessment and better aligned to a person-centered approach. Modifications to the physical examination, particularly a renewed emphasis on clinical observation, are outlined. The chapter concludes with a discussion of clinical thinking and judgment. A plea is made for inculcating a receptiveness toward a narrative competence within medicine.

Whether we are looking into Iceland, the United States, or another lava land somewhere in between, a book about promising genomics in the latter years of the twentieth century—a book about speculation, capital, DNA, and other volatile, lava-like substances; a book about new technologies, new sciences, and new organisms, and the new scientist-celebrities who attempted to turn all these novelties into profitable businesses; a book about volatile combinations of facts and fictions in science and literature; a book about nationalism in an era of globalization; a book about privacy and its shadows, as medical records and genetic information become exchangeable across numerous boundaries—such a book about promising genomics in lava land could hardly begin with a more appropriate document than a press release. If you were living in any lava land other than that most famous one, Iceland, the first time you heard about deCODE Genetics might have been on February 2, 1998, when Roche and DeCode Genetics Inc. of Iceland announced a collaboration in genetic diseases research. This book tells the story of deCODE Genetics.

Quality data are necessary to make good decisions in health delivery for both individuals and populations. Data can be used to improve care and achieve equity. However, systems for health data management were historically weak in most impoverished countries. Health data are not uncommonly compiled in stacks of poorly organized paper records. Efforts to streamline and improve health information discussed in this chapter include patient-held booklets, demographic health surveys, and the use of common indicators. This chapter also focuses on the evolution of medical records, including electronic systems. The use of data for monitoring, evaluation, and quality improvement is explained. Finally, this chapter reviews the use of frameworks—such as logic models and log frames—for program planning, evaluation, and improvement.

This chapter provides an approach to teaching techniques for conducting observational drug safety studies, with a focus on describing the most important components of good research methodology: defining exposure, outcome, and controlling for confounding. Since the area of drug safety covers all drugs and most clinical diagnoses, it is critical to carefully consider every drug disease relationship when designing a study to evaluate the association between the two. Drugs are taken short term, chronically, and intermittently. Outcomes can be acute or delayed. These factors dictate how exposure and outcome are defined. Confounding by indication is a constant concern in pharmacoepidemiology as are other important confounders. This chapter discusses methods for controlling for confounding in the study design. Examples and assignments are presented to reinforce the course material. Use of large administrative and electronic medical record databases and their importance to pharmacoepidemiology are also described and discussed at length.