Allan M. Brandt

Racism and Research: The Case of the Tuskegee Syphilis Study

In 1932 the U.S. Public Health Service (USPHS) initiated an experiment in Macon County, Alabama, to determine the natural course of untreated, latent syphilis in black males. The test comprised 400 syphilitic men, as well as 200 uninfected men who served as controls. The first published report of the study appeared in 1936 with subsequent papers issued every four to six years, through the 1960s. When penicillin became widely available by the early 1950s as the preferred treatment for syphilis, the men did not receive therapy. In fact on several occasions, the USPHS actually sought to prevent treatment. Moreover, a committee at the federally operated Center for Disease Control decided in 1969 that the study should be continued. Only in 1972, when accounts of the study first appeared in the national press, did the Department of Health, Education and Welfare halt the experiment.

Electronic Patient-Physician Communication: Problems and Promise

The introduction of the telephone into medical practice in the last decades of the 19th century was greeted with both celebration and trepidation. Invented in 1876 by Alexander Graham Bell, the telephone was commercially introduced in the late 1870s. It was not until World War I, however, that the telephone became a common utility [1]. Although some physicians heralded the advantages of efficiency and accessibility that the telephone offered, others expressed concerns about being overwhelmed by patients seeking over-the-telephone care, the safety of telephone diagnosis, and problems of privacy. By the mid-1920s, the telephone was fully integrated into physician practice, as it was in broader society. The telephone had become a mandatory medical technology, as central to practice as the stethoscope and sphygmomanometer [2]. We are again on the threshold of a dramatic expansion in communications technology that may have profound effects on the patientphysician relationship and the practice of medicine. We are approaching a critical mass of Internet users that will lead to a wide diffusion of electronic communications within medical practice [3, 4]. The American Medical Informatics Association recently published recommendations to guide computer-based communications between clinicians and patients [5]. Little attention, however, is being paid to the implications of direct electronic linkages between physicians and patients. Unless implemented with substantial forethought, these linkages may disturb delicate balances in the patientphysician relationship, widen social disparities in health outcomes, and create barriers to access. We attempt to identify some of the promise and pitfalls of electronic patientphysician communication before such technology becomes widely distributed. Furthermore, we propose a research agenda to provide data that is useful for careful shaping of the communications infrastructure. The Present State of Electronic Medicine Internet technologies have become useful tools for medical practice. Online, physicians can search the medical literature and find both synoptic and full-text medical journal content [6-10]. Patients have access to medical information, self-help and support groups, and even medical experts [11-13]. The World Wide Web can be used to link patient data across multiple institutions for retrieval by providers at the point of service or by researchers [14, 15]. The Internet also allows visual contact. For example, the National Library of Medicines Telemedicine Initiative enables parents of premature infants to videoconference from home with the neonatal intensive care unit [16]. Although the Internet community has always resisted national and international efforts to regulate its structure or content [17, 18], a motion is under way to impose an organizational structure and monitor the quality of the largely unchecked, unstructured, and unregulated volumes of medical information found on the Web [19-21]. Journals, professional organizations [19, 21, 22], and the federal government [23-27] have proposed monitoring medical information on the Internet and regulating telemedicine technologies. Early federal efforts along these lines include the Congressional Telecommunications Act of 1996 [28] as well as the U.S. Food and Drug Administrations proposed oversight of telemedicine applications and clinical software [22]. Direct electronic communication linkages between physicians and patients are also evolving, although so far these are under considerably less scrutiny. One such linkage is simple e-mail. Approximately 40 000 000 persons in the United States use the Internet [29], and anecdotal reports are emerging of its use for communication between physicians and patients. In university health service settings, in which both patients and physicians tend to have access to e-mail, an initial investigation has demonstrated the potential for widespread acceptance of electronic patientphysician communications by this method [30, 31]. The Promise of E-Mail E-mail can connect physicians with patients, thereby increasing access to care, enhancing patient education, augmenting screening programs, and improving adherence to treatment plans. Barriers to access often arise simply because physicians can be difficult to reach [32]. Unlike telephone conversations, which require both parties to be available at the same time, e-mail, like voice mail, is an asynchronous mode of communication [33, 34], essentially creating continuous access to the health care system. A widening gap is developing between the crucial need for transmitting more information and the relatively few and often brief face-to-face opportunities for communication between physicians and patients. The quality of these personal encounters is further diminished by the need for physicians to address administrative issues, such as referrals, insurance approvals, and rejected claims, during precious contact time. Inadequate communication, now more the rule than the exception, leads to increased stress [35], diminished satisfaction [36, 37], decreased adherence to therapeutic regimens [38, 39], and elevated risk for malpractice claims [40]. Linking patients and physicians through e-mail could increase the involvement of patients in the supervision and documentation of their own health care, processes that may activate patients and contribute to improved health [41-44]. An example of electronic linkages activating patients is CHESS (Comprehensive Health Enhancement Support System), an interactive computer-based system used to support persons with AIDS and HIV infection [45]. Telephone and voice mail technologies have been effective in screening for mental disorders and substance abuse [46, 47]. For example, computer-generated telephone reminders can improve compliance with preschool immunization visits [48]. Standard e-mail or e-mail with an interface allowing structured data entry may allow more effective triage and automation of messaging than voice and video mail do. Whether e-mail between physicians and patients can have advantages for the therapeutic relationship is a question worthy of investigation. We propose a research agenda structured around foreseeable problem areas in electronic patientphysician communication. Potential Pitfalls of E-Mail and the Need for a Research Agenda Inappropriate Use of Communication Tools Health care providers need a framework for choosing the communication mode that is most appropriate for each situation. Certain kinds of communication needs may be satisfied through e-mail. For example, the patient may use e-mail to make an appointment. He or she may request general information, such as a list of low-sodium foods, or specific information, such as a modified insulin dosage based on home monitoring of glucose levels. The physician might initiate e-mail contact to conduct routine guidance and education (for example, to advise a new mother to put her baby to sleep on his back), to remind a patient of an upcoming visit, or to check on a patients progress (for example, in a smoking cessation program). In contrast, the use of e-mail might be contraindicated in some areas, and face-to-face or telephone contact might be required. Use of e-mail by patients for urgent needs could lead to problems not being addressed quickly enough. It might also be inappropriate for physicians to use e-mail to communicate abnormal or confusing test results or to relay bad news. The diagnosis of a new problem requiring a complex and dynamic dialogue might be best handled synchronously. Face-to-face contacts are optimal for making many diagnoses, although elaborate telephone triage systems have been successfully used for this purpose [49]. Preference for the use of e-mail will depend on the context as well as on the individual physician and patient. Just as some physicians now feel more comfortable than others with telephone medicine, so must physicians exercise personal discretion in their use of e-mail. Used properly, e-mail may promote increased contact between physicians and patients. By increasing opportunities for communication before and after visits, e-mail might help optimize the value of personal encounters. Empirical studies, as well as expert consensus panels, are needed to develop general guidelines to direct patients and clinicians to use the contextually appropriate mode of communication. Evidence-based indications and contraindications for e-mail in the medical context must be clearly specified so that e-mail is used appropriately and does not become a barrier to telephone or face-to-face contact. Security and Confidentiality The confidentiality of medical information [50] and the privacy of e-mail are paramount. Patients or physicians who use e-mail in the workplace for medical interchange are not assured of confidentiality and may inadvertently expose sensitive details of illness or social circumstances to an employer. Furthermore, patients who use family e-mail accounts at home may lack privacy from spouses, children, or parents. Medical account addresses could be distinct from other personal or professional ones. Medical e-mail addresses and the messages generated through them should be reliably documented in and linked to the patients medical record. Such linkage can be accomplished in various ways, from simply including a patient identifier to embedding a hypertext link to a Web-enabled medical record [14]. A critical decision will be the selection of a set of national health identifiers, as called for by the Health Portability Act of 1996 [23]. Naive use of broadly disseminated identifiers may be unwise. For example, one proposed identifier, the Social Security number, can easily be used to identify a patient and link his or her health record to other records, such as those in financial and marketing databases [51]. The Computer Science and Telecommunication Board of the National Research Council [52] r

AIDS in historical perspective: four lessons from the history of sexually transmitted diseases.

Four lessons from the social history of sexually transmitted disease in the U.S. are assessed for their relevance to the current AIDS epidemic: fear of disease will powerfully influence medical approaches and public health policy, education will not control the AIDS epidemic, compulsory public health measures will not control the epidemic, and the development of effective treatment and vaccines will not immediately or easily end the AIDS epidemic. Diseases are complex bio-ecological problems that may be mitigated only by addressing a range of scientific, social, and political considerations; no single intervention will address the complexities of the AIDS epidemic.

Inventing Conflicts of Interest: A History of Tobacco Industry Tactics

Confronted by compelling peer-reviewed scientific evidence of the harms of smoking, the tobacco industry, beginning in the 1950s, used sophisticated public relations approaches to undermine and distort the emerging science. The industry campaign worked to create a scientific controversy through a program that depended on the creation of industry-academic conflicts of interest. This strategy of producing scientific uncertainty undercut public health efforts and regulatory interventions designed to reduce the harms of smoking. A number of industries have subsequently followed this approach to disrupting normative science. Claims of scientific uncertainty and lack of proof also lead to the assertion of individual responsibility for industrially produced health risks.

AIDS: From Social History to Social Policy

Despite philosopher George Santayana’s famous injunction that those who do not remember the past are condemned to repeat it, history holds no simple truths. Nevertheless, there are a number of significant historical questions relating to the AIDS epidemic. What does the history of medicine and public health have to tell us about contemporary approaches to the very difficult dilemmas raised by AIDS? Is AIDS something totally new, or are there instances in the past that are usefully comparable? Are there some lessons in the way science and society has responded to epidemic disease in the past that could inform our understanding of and response to the current health crisis? There are obviously no simple answers to such questions. History is not a fable with the moral spelled out at the end. Even if we could agree on a particular construction of past events, it would not necessarily lead to consensus on what is to be done. And yet, history provides us with one means of approaching the present. In this regard, the history of responses to particular diseases can inform and deepen our understanding of the AIDS crisis and the medical, social, and public health interventions available. The way a society responds to problems of disease reveals its deepest cultural, social, and moral values. These core values-patterns of judgment about what is good or bad-shape and guide human perception and action. This, we know, has most certainly been the case with AIDS; the epidemic has been shaped not only by powerful biological forces but by behavioral, social, and cultural factors as well. This essay analyzes the process by which social and cultural forces affect our understanding of disease-the “social construction of disease”-and examines several analogues to the current health crisis. But disease is more than a metaphor; these “social constructions” have powerful socio-political implications.’ Sexually Transmitted Diseases in Historical Context

How AIDS Invented Global Health

The changes wrought by HIV have affected research, clinical practice, and policy. And the AIDS epidemic provided the foundation for a revolution that upended traditional approaches to “international health,” replacing them with innovative global approaches to disease.

A Reader's Guide to 200 Years of the New England Journal of Medicine

In the past 200 years, the Journal has covered and participated in seismic change in medical knowledge and practice. Yet the Journal s history also exposes a stability of orientation and approach to fundamental problems of disease in patients and populations.

Screening immigrants and international travelers for the human immunodeficiency virus

Global strategies to control infectious disease have historically included the erection of barriers to international travel and immigration.1 2 3 Keeping people with infectious diseases outside nat...

FDA Regulation of Tobacco — Pitfalls and Possibilities

It is likely that during the coming year, Congress will pass legislation bringing tobacco products under the regulatory authority of the FDA. Allan Brandt writes that it behooves public health advocates and Congress to fully understand all the implications of FDA regulation. View an audio slide presentation in which Dr. Brandt discusses cigarette advertisements in the 20th century. Dr. Allan Brandt discusses the provisions, benefits, and criticisms of legislation that would grant the FDA regulatory authority over tobacco products. Dr. Brandt is a professor of the history of medicine at Harvard Medical School, Boston, and dean of the graduate school of arts and sciences at Harvard University, Cambridge, MA.

Bioethics: Using Its Historical and Social Context

On the one hand, bioethics seems an integral part of the landscape of medical practice. Ethics committees, clinical ethics journals, policies based on specific theories of informed consent and patient decision making are ubiquitous. However, on the other hand, questions arise, both within the bioethics literature and along corridors of hospitals and clinics, as to just how well bioethical theorizing reflects and meets the realities of clinical dilemmas and where it gets its authoritative voice. What does bioethical reasoning and writing know? What makes a particular ethical view count? We hope to address these important questions by thinking historically about the development of bioethics. In the course of doing so we briefly describe some of the major “schools” and approaches that have emerged in the field. But more importantly, rather than pick or choose among them, we encourage thinking about how and why these ways of thinking about medicine emerged. We do so to cast bioethics as less a worked-out expertise than a historically contingent reflection of anxieties about medical practice that can change. The question should be less “what method is best to know the ethical?” than “what are our needs and ethical questions, and who should participate in addressing them?”