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e-Patient Relations: e-Health-Ethik und -Recht
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Guidelines regarding patient–provider electronic mail are presented. The intent is to provide guidance concerning computer-based communications between clinicians and patients within a contractual relationship in which the health-care provider has taken on an explicit measure of responsibility for the client's care. The guidelines address two interrelated aspects: effective interaction between the clinician and patient, and observance of medicolegal prudence. Recommendations for site-specific policy formulation are included.
This article argues that the emergence and growth of internet use in Britain has important implications for the analysis of social policy. It attempts to outline a research agenda for social policy in relation to one particular aspect of internet use, that of on-line self-help and social support – what we term here virtual-community care . The article presents data on patterns of home based internet use in Britain and outlines some contemporary debates in social policy about the importance of self-help and social support. It also considers how the internet is being used for self-help and social support with a particular emphasis on the emerging situation in Britain. Three illustrations of on-line self-help and social support are presented: two from newsgroups, which are part of the ‘uk.people.* hierarchy’: one concerned with disability and one with parenting issues; and one web based forum concerned with issues surrounding mortgage repossession. Drawing upon this illustrative material the article discusses some emergent issues for contemporary social policy discourse: the rise of self-help groups; the privileging of lay knowledge and experience over the ‘expert’ knowledge of health and welfare professionals; the nature of professional-client relationships; the quality and legitimacy of advice, information and support; dis/empowerment; and social exclusion.
A lot of money can be made from healthy people who believe they are sick. Pharmaceutical companies sponsor diseases and promote them to prescribers and consumers. Ray Moynihan, Iona Heath, and David Henry give examples of “disease mongering” and suggest how to prevent the growth of this practiceThere's a lot of money to be made from telling healthy people they're sick. Some forms of medicalising ordinary life may now be better described as disease mongering: widening the boundaries of treatable illness in order to expand markets for those who sell and deliver treatments. 1 2 Pharmaceutical companies are actively involved in sponsoring the definition of diseases and promoting them to both prescribers and consumers. The social construction of illness is being replaced by the corporate construction of disease.Whereas some aspects of medicalisation are the subject of ongoing debate, the mechanics of corporate backed disease mongering, and its impact on public consciousness, medical practice, human health, and national budgets, have attracted limited critical scrutiny.Within many disease categories informal alliances have emerged, comprising drug company staff, doctors, and consumer groups. Ostensibly engaged in raising public awareness about underdiagnosed and undertreated problems, these alliances tend to promote a view of their particular condition as widespread, serious, and treatable. Because these “disease awareness” campaigns are commonly linked to companies' marketing strategies, they operate to expand markets for new pharmaceutical products. Alternative approaches—emphasising the self limiting or relatively benign natural history of a problem, or the importance of personal coping strategies—are played down or ignored. As the late medical writer Lynn Payer observed, disease mongers “gnaw away at our self-confidence.”2Although some sponsored professionals or consumers may act independently and all concerned may have honourable motives, in many cases the formula is the same: groups and/or campaigns are orchestrated, funded, and …
Expert systems are knowledge-based information systems which are expected to have human attributes in order to replicate human capacity in ethical decision making. An expert system functions by virtue of its information, its inferential rules, and its decision criteria, each of which may be problematic. This paper addresses three basic reasons for ethical concern when using the currently available expert systems in a decisions-making capacity. These reasons are (1) expert systems' lack of human intelligence, (2) expert systems' lack of emotions and values, and (3) expert systems' possible incorporation of intentional or accidental bias. For these reasons artificial ethics seems to be science fiction. Consequently, expert systems should be used only in an advising capacity and managers should not absolve themselves from legal and ethical responsibility when using expert systems in decision making.
Are designers responsible for all of the uses of the systems they create?
Despite the common use of e-mail, little beyond anecdote or impressions has been published on patient-clinician e-mail consultation.
To report our experiences with free-of-charge e-mail consultations.
Retrospective review of all e-mail consultation requests received between November 1, 1995, and June 31, 1998.
Consecutive e-mail consultation requests sent to the Division of Pediatric Gastroenterology at the Children's Medical Center of the University of Virginia in Charlottesville.
Number of consultation requests per month, time required to respond, who initiated the request and their geographic origin, and the kind of information requested in the consultation.
During the 33-month period studied, we received 1239 requests, an average (SD) of 37.6 (15.9) each month. A total of 1001 consultation requests (81%) were initiated by parents, relatives, or guardians, 126 (10%) by physicians, and 112 (9%) by other health care professionals. Consultation requests were received from 39 states and 37 other countries. In 855 requests (69%), there was a specific question about the cause of a particular child's symptoms, diagnostic tests, and/or therapeutic interventions. In 112 (9%), the requester sought a second opinion about diagnosis or treatment for a particular child, and 272 consultations (22%) requested general information concerning a disorder, treatment, or medication without reference to a particular child. A total of 1078 requests (87%) were answered within 48 hours of the initial request. On average, reading and responding to each e-mail took slightly less than 4 minutes.
E-mail provides a means for parents, guardians, and health care professionals to obtain patient and disease-specific information from selected medical consultants in a timely manner.
Telemedicine encompasses medical practice, teaching, and research with real-time interactions over distances too great for unaided communication. It includes audio and video transmissions, either separately or combined, and can be done through mechanical (e.g., signal flags or lights) or electronic means (e.g., telecommunications). In many ways, telemedicine is a subset of medical informatics, itself a rapidly developing field. Prior definitions have been broader, including not only medical practice over distance, but also simple information transfer.
As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1, P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1, P< 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable.
This study describes aspects of computer group use as a vehicle for self-help by parents of children with cancer. Using an electronic mail system, data were gathered from 73 parents who had participated in online support groups. Most participants were Caucasian, well educated, and reported annual incomes of more than $50,000. The perceived benefits of the computer group involvement were getting information, sharing experiences, receiving general support, venting feelings, gaining accessibility, and using writing. The disadvantages included "noise," negative emotions, large volume of mail, and lack of physical contact and proximity. The findings indicate that computer group use is more common in parents with relatively high socioeconomic status. There are certain advantages and disadvantages of computer group use that need to be recognized and addressed by health professionals and users.
Supportive-expressive group therapy has been reported to prolong survival among women with metastatic breast cancer. However, in recent studies, various psychosocial interventions have not prolonged survival.
In a multicenter trial, we randomly assigned 235 women with metastatic breast cancer who were expected to survive at least three months in a 2:1 ratio to an intervention group that participated in weekly supportive-expressive group therapy (158 women) or to a control group that received no such intervention (77 women). All the women received educational materials and any medical or psychosocial care that was deemed necessary. The primary outcome was survival; psychosocial function was assessed by self-reported questionnaires.
Women assigned to supportive-expressive therapy had greater improvement in psychological symptoms and reported less pain (P=0.04) than women in the control group. A significant interaction of treatment-group assignment with base-line psychological score was found (P</=0.003 for the comparison of mood variables; P=0.04 for the comparison of pain); women who were more distressed benefited, whereas those who were less distressed did not. The psychological intervention did not prolong survival (median survival, 17.9 months in the intervention group and 17.6 months in the control group; hazard ratio for death according to the univariate analysis, 1.06 [95 percent confidence interval, 0.78 to 1.45]; hazard ratio according to the multivariate analysis, 1.23 [95 percent confidence interval, 0.88 to 1.72]).
Supportive-expressive group therapy does not prolong survival in women with metastatic breast cancer. It improves mood and the perception of pain, particularly in women who are initially more distressed.
To describe techniques for retrieval and appraisal used by consumers when they search for health information on the internet.
Qualitative study using focus groups, naturalistic observation of consumers searching the world wide web in a usability laboratory, and in-depth interviews.
A total of 21 users of the internet participated in three focus group sessions. 17 participants were given a series of health questions and observed in a usability laboratory setting while retrieving health information from the web; this was followed by in-depth interviews.
Heidelberg, Germany.
Although their search technique was often suboptimal, internet users successfully found health information to answer questions in an average of 5 minutes 42 seconds (median 4 minutes 18 seconds) per question. Participants in focus groups said that when assessing the credibility of a website they primarily looked for the source, a professional design, a scientific or official touch, language, and ease of use. However, in the observational study, no participants checked any "about us" sections of websites, disclaimers, or disclosure statements. In the post-search interviews, it emerged that very few participants had noticed and remembered which websites they had retrieved information from.
Further observational studies are needed to design and evaluate educational and technological innovations for guiding consumers to high quality health information on the web.
The ready and free availability of information that characterizes the Information Age--with health information on the Internet and direct-to-consumer advertising of prescription drugs as two of these major information sources--is bringing about significant changes in patient-physician relationships. By developing a matrix of intended and unintended consequences and desirable and undesirable consequences, it's possible to have a better understanding of the impact of the free flow of information on this traditional relationship. Ultimately, any marketing approach to these newly empowered patients must take their level of health care knowledge into consideration.
In this volume Allen Buchanan collects ten of his most influential essays on justice and healthcare and connects the concerns of bioethicists with those of political philosophers, focusing not just on the question of which principles of justice in healthcare ought to be implemented, but also on the question of the legitimacy of institutions through which they are implemented. With an emphasis on the institutional implementation of justice in healthcare, Buchanan pays special attention to the relationship between moral commitments and incentives. The volume begins with an exploration of the difficulties of specifying the content of the right to healthcare and of identifying those agents and institutions that are obligated to help ensure that the right thus specified is realized, and then progresses to an examination of the problems that arise in attempts to implement the right through appropriate institutions. In the last two essays Buchanan pursues the central issues of justice in healthcare at the global level, exploring the idea of healthcare as a human right and the problem of assigning responsibilities for ameliorating global health disparities. Taken together, the essays provide a unique and consistent position on a wide range of issues, including conflicts of interest in clinical practice and the claims of medical professionalism, the nature and justification for the right to health care, the relationship between responsibility for healthcare and the nature of the healthcare system, and the problem of global health disparities. The result is an approach to justice in healthcare that will facilitate more productive interaction between the normative analysis of philosophers and the policy work of economists, lawyers, and political scientists.
New technology always raises compelling ethical questions. As those in medicine increasingly depend on computers and other intelligent machines, the intersection of ethics, computing and the health professions grows much more complex and significant. This book attempts systematically to identify and address the full range of ethical issues that arise when intelligent machines are used in medicine, nursing, psychology, and allied health professions. It maps and explores a variety of important issues and controversies, including ethics and evaluation in computational medicine, patient and provider confidentiality, responsibility for use of computers in medicine, appropriate use of decision support systems, outcomes of research and computational prognosis (including mortality predictions), and computer-based biomedical research - especially meta-analysis. This book is accessible to participants in the fields of bioethics and medical informatics. It is appropriate for physicians, nurses, administrators, ethicists, health attorneys, advanced undergraduates and graduate students.
Die Medienwirkungsforschung hat Konjunktur. Nicht nur wird diskutiert, wer welche Medien benutzt, sondern vor allem, was diese Medien mit uns machen. Gleichzeitig besteht Bedarf an verallgemeinerbaren Bewertungskriterien für diese Wirkungen. Hier nun ist die Medienethik gefragt. Sowohl Wissen um die Wirkungen als auch Kriterien der Bewertung sind maßgebend für die Orientierung medienpolitischen Handelns. Die Beiträge dieses Bandes beleuchten das Verhältnis von Medienethik und Medienwirkungsforschung.
Die Aufhebung zeitlicher und räumlicher Grenzen durch den Einsatz der Telemedizin wirft eine Fülle rechtlicher Fragen auf. Auf dem 7. Einbecker Workshop der DGMR haben sich Experten der Medizin und des Rechts, Praktiker, Wissenschaftler und Angehörige der Körperschaften im Gesundheitswesen mit diesen Rechtsfragen beschäftigt und einen Empfehlungstext erarbeitet, der national und international große Beachtung fand. Die "Einbecker Empfehlungen zu Rechtsfragen der Telemedizin" sind zusammen mit den Referaten in diesem Werk wiedergegeben. Sie bilden die Grundlage für die Weiterentwicklung rechtlicher Lösungen für nationale und internationale Telemedizin.
This text presents a case for how computers can be used in health care by both clinicians and patients, and argues that competing interests as well as managerial, political and technical barriers have resulted in the misapplication and under-utilization of computer technology in health care settings. The book demonstrates how computers are particularly useful when applied to the areas of diagnosis and assessment, decision-making and specialized techniques in treatment, preventative models and management, crucial research, administration, organization, practice management, and "patient power".
Bis heute gelten wirtschaftliche Aspekte des Gesundheitswesens als ein Problem, das mit der Haftung des behandelnden Arztes allenfalls in Randbereichen zu verbinden ist. In den maßgeblichen Publikationen zum ärztlichen Haftungsrecht findet die Ökonomie keine Erwähnung. (1) Dabei geht es um die Haftung der Leistungserbringer in einem volkswirtschaftlich bedeutsamen Markt von etwa 400 Mrd. DM. Angesichts dieser Größe ist die Kostensteigerung im Gesundheitswesen (und das nicht nur in Deutschland) ein beherrschendes Thema, das zahlreiche andere, juristische Probleme zusehends an den Rand zu drängen scheint In der Diskussion um steigende Kosten der Krankenhausbehandlung und Arzneimittelverordnung fehlt es aber auch nicht an Hinweisen auf Defensivmedizin und steigende Versicherungsprämien der Ärzte. Dies soll Anlaß sein, den wirtschaftlichen Auswirkungen der Haftungsrechtsprechung im medizinischen Bereich nachzugehen.
Die Nutzung des World Wide Web ist binnen weniger Jahre in vielen Bevölkerungsschichten und Berufen selbstverständlicher Bestandteil des Alltags geworden (van Eimeren, B. und Gerhard, H. (2000)). Mit der Entwicklung des Internet zu einem Massenmedium mehrt sich auch die weltweite Nutzung der unzähligen und in rascher Folge wechselnden Mailinglists, Chatrooms, Diskussionsforen (vormals: “elektronische Bulletin-Boards”) oder Newsgroups im Internet. Für Gesundheitsinteressierte gehören ärztlich moderierte Foren zu den beliebtesten Angeboten. So generieren erfolgreiche Gesundheits-Informationsdienste im Internet bis zu 95 Prozent ihres Nutzungsvolumens über e-mail-basierte Kommunikations-Plattformen.
Kaum ein anderes Gebiet unterliegt gegenwärtig derart umwälzenden strukturellen Veränderungen wie der Bereich der elektronischen Datentechnik. Allein dieses oder auch das Wort „EDV“ erscheint unter dem Eindruck des geradezu atemberaubenden technischen Fortschritts als Ausdruck eines die offenbar grenzenlosen Möglichkeiten der Digitalisierung verkennenden antiquierten semantischen Verständnisses. Gerade das Recht, gerade die Rechtsfortbildung, dürfen sich der Notwendigkeit der Weiterentwicklung, namentlich der Anpassung an veränderte Verhältnisse nicht verschließen, gerade im Blick auf die zunehmend in den Vordergrund tretende Informationsgesellschaft und insbesondere auf die sich mit der sog. „Telearbeit“ ergebenden Änderungen, deren Halbwertszeiten des jeweiligen Erkenntnisstandes offensichtlich zunehmend kürzer werden.
This article analyses the use and production of health information on the Internet. The paper will show that users of health services have also become significant providers of health information and advice. This analysis is based on two studies. The first involved a qualitative study of households that used home computers to find health information on the Internet. The second piece of research involved the examination of home pages that contained accounts of ill health and an e-mailed questionnaire to home page authors. Drawing upon this research the consumption of health information is examined and related to how users make discussions about their health. This is followed by an analysis of the provision of health information on home pages. It is shown that these include web sites that provide simple accounts of an individual illness as well as sites that advocate a particular approach to health or offer services and products. The interweaving of personal experience with advice is considered and linked to debates about the quality of health information on the Internet and the reconfiguration of 'expertise'.
Background: Developers of Interactive Health Communication (IHC) are capable of providing great benefit by creating interactive programs that serve to protect and improve health. Conducting proper evaluation of these programs will ensure that they achieve these goals more successfully. Conclusions: This article seeks to inform developers of IHC about which types of evaluation are most important to include as a part of the development process and to examine the ways in which such evaluation can be implemented to benefit the producers—and ultimately, the consumers—of IHC.
Das World Wide Web (WWW) bedient Patienten mit einer Fülle von Gesundheitsinformationen und Dienstleistungen. Dieser Faktor setzt neue Akzente im Gesundheitswesen. Das Internet kann dazu beitragen, einen informierten Patienten zu schaffen, der aktiv in klinische Entscheidungsprozesse eingebunden ist ("shared decision making"). Dies hat Einfluß auf die Arzt-Patient-Beziehung. Ein informierter Patient fordert mehr Leistung. Die erhöhte Transparenz und Vergleichbarkeit der erbrachten Leistung in der Patientenversorgung führt zu einer Verschärfung des Wettbewerbs unter Leistungserbringern. Auf der anderen Seite birgt das Internet gewisse Risiken: Die Qualität von Gesundheitsangeboten im Internet wird oft als mangelhaft beschrieben und Patienten achten selten auf die Qualität der angebotenen Informationen. Daher ist es nötig, ein aktives Qualitätsmanagement für Informationen und Dienstleistungen zu betreiben. Das Internet ist nicht nur eine passive Informationsressource, sondern vor allem ein Interaktionsmedium. Diese Eigenschaft kann auch für Qualitätsmanagement nutzbar gemacht werden. Intelligente Technologien werden in Zukunft, wenn sich das WWW in Richtung "semantisches Web" entwickelt, eine zunehmende Bedeutung erlangen. Insbesondere, wenn Verbraucher intelligente Computerprogramme, sogenannte "Agenten", einsetzen um im WWW Informationen einzuholen oder die Vertrauenswürdigkeit eines Gesundheitsinformationsanbieters zu überprüfen.
Although it is impossible to predict its evolution, recent developments and trends indicate that the Internet will have a profound effect on the role of patients and the general public in health care decisions and on how they interact with clinicians and other groups of decision-makers. The Internet is providing extraordinary opportunities to build strong partnerships between consumers and any other group involved in health care decisions. It has also the potential to create unprecedented division.
In this session, I will focus on key challenges that we must meet to develop optimal partnerships between consumers and other groups of decision-makers. Some of these include the need for:
meaningful collaboration with consumers,
efficient strategies to monitor patterns of Internet use among consumers,
preparation for upcoming technological developments,
balance between connectivity and privacy,
better understanding of the balance between face-to-face and virtual interactions, and
equitable access to technology and information across the globe.
The presentation is expected to motivate discussion and debate around issues that require immediate attention if we are to maximize the benefit of the Internet in health care.
The evolution of the "information age" in medicine is mirrored in the exponential growth of medical web pages, increasing numbers of databases accessible on line, and expanding services and publications available on the internet, The handful of computers linked by the predecessor of the internet in 1969 has grown to more than 5 million websites today. In spring 1998, the world wide web had at least 320 million web pages of general content.(1) In addition, there are countless conversational areas on the internet, like that rooms and newsgroups, where people exchange messages on tens of thousands of subjects, Somewhere more than 150 million people currently communicate over the Internet(2) According to the World wide Web Consortium (W3C), however, the rapid "hypergrowth" of the web from 1992 to mid-1995 has now somewhat slowed to roughly gaining an order of magnitude "only" every 30 months.(3)
To examine patients' knowledge, use, and attitudes regarding electronic mail communication with their family physicians.
Mail survey.
A university-based family practice center.
Adult patients (18 years and older) of full-time faculty physicians at a university-based family practice center who had seen their physicians at lease once in the 10-month period between July 1, 1992, and April 30, 1993 (N = 4094). Subjects were eligible for participation if both they and their physicians had an electronic mail address at the University of Kentucky, Lexington (n = 117).
None.
Patient-reported knowledge, use, and attitudes regarding the utility of electronic mail as a means of patient-physician communication.
The response rate to the survey was 74% (n = 87). Patient-physician communication via electronic mail was positively perceived by patients for whom electronic mail was accessible Patient-physician communication via electronic mail was perceived to increase speed, convenience, and access to medical care. Electronic mail communication was perceived to be good for simple and nonurgent problems, such as refilling prescriptions, communicating laboratory results, and making appointments. Ninety percent of the patients who had corresponded with their physicians via electronic mail used the medium to discuss a medical problem.
Although electronic mail is not presently in wide use for patient-physician communication, there is great potential for its widespread acceptance.
To assess medical information provided in a medically oriented Internet discussion group, in terms of the professional status of the individuals providing information, the consistency of the information with standard medical practice, and the nature of the evidence cited in support of specific claims or recommendations.
Standardized review of 1,658 consecutive messages on a particular online discussion group during a 5-month period.
An online discussion group for sufferers of painful hand and arm conditions.
All participants in this discussion group during the study period.
Professional training of those offering medical information, consistency of the advice and recommendations offered with conventional medical practice, and nature of evidence cited in support of medical claims were determined. Of all messages, 55.9% (927) addressed a medical topic. Of these, 79% (732) provided medical information, of which 89.3% (654) were authored by persons without professional medical training, and 5.1% (37) were authored by trained health professionals. Approximately one third of the medical information provided was classified as unconventional. Personal experience was the basis of information provided in 61% of the nonprofessionals' messages and 13.5% of the professionals' messages, while no source was given as the basis of information provided in 29.8% of the nonprofessionals' messages and 67.6% of the professionals' messages. A published source was cited in 9.2% of the nonprofessionals' and 18.9% of the professionals' messages.
These findings suggest that medical information available on Internet discussion groups may come from nonprofessionals and may be unconventional, based on limited evidence, and/or inappropriate.
The Internet is an increasingly popular medical information resource
for consumers. A 1997 survey indicated that 43% of the estimated 40.6 million
US adults aged 18 years and older who had accessed the Internet within the
previous 12 months used it to obtain health or medical information.1 At least 10000 health and medical sites are on the
World Wide Web,2 and are maintained by entities
ranging from academic medical centers and professional organizations to individuals,
and vary widely in quality.3 Thousands of other
online self-help and support groups, electronic bulletin boards, and mailing
lists also are available, covering topics ranging from acne to yeast infections.4,5 Fridsma et al6
have suggested that many patients who go online are increasingly interested
in exchanging e-mail with their physicians. In a 1996 survey, Brown7 found that patients ranked "information from my own
doctor's office" as the type of online health information they desired most.
Increased use of e-mail by physicians, patients, and other health care organizations and staff has the potential to reshape the current boundaries of relationships in medical practice. By comparing reception of e-mail technology in medical practice with its historical analogue, reception of the telephone, this article suggests that new expectations, practice standards, and potential liabilities emerge with the introduction of this new communication technology. Physicians using e-mail should be aware of these considerations and construct their e-mail communications accordingly, recognizing that e-mail may be included in the patient's medical record. Likewise, physicians should discuss the ramifications of communicating electronically with patients and obtain documented informed consent before using e-mail. Physicians must keep patient information confidential, which will require taking precautions (including encryption to prevent interception) to preserve patient information, trust, and the integrity of the patient-physician relationship.
The information revolution triggered by the rapid growth of the Internet has allowed healthcare providers and patients to access a rapidly expanding volume of information. To address the quality of this information, a survey of the data on a single urology-related topic available on the Internet was performed.
The search on the World Wide Web (Web) was performed using the search engine HotBot and search directory Yahoo. The Web pages were assessed according to their relevancy to the topic chosen. Relevance rates were derived from the number of relevant sites divided by the total number of sites found. Relevant sites were subsequently ranked for quality on the basis of their accuracy, comprehensiveness, and objectivity. HotBot was then subsequently divided by domain, with each assessed separately. Yahoo was analyzed in its entirety. The resources were then compared for relevance and quality of information.
When using the keyword "Viagra," HotBot responded with 15,109 hits. Yahoo presented 51 hits under the category, "Health: Pharmacy: Drugs and Medications: Specific Drugs and Medications: Viagra (Sildenafil)." The relevance rate for the first 50 hits in the search engine HotBot was 0.08. The relevance rates for the edu and org domains found by HotBot were 0.22 and 0.24, respectively; those for com and net were both 0.10. The relevance rate for the search directory Yahoo was 0.20. For relevant sites, the quality of the information presented was significantly higher in the Yahoo and in the HotBot domains hosted by nonprofit organizations when compared with HotBot in general and with its commercially oriented domains. HotBot overall was found to contain seven excellent sites, of which only three were found within Yahoo.
Although the medical information available on the Web has proliferated at a remarkable rate, the number of Web sites providing complete, nonbiased information continues to represent only a small portion of the total. We have shown that the search directory Yahoo reduced the number of irrelevant sites significantly, but at the same time, some very valuable information available in HotBot was missing. At present, it may be useful to conduct searches within Yahoo followed by a review of both the edu and org HotBot domains.
There is a considerable knowledge base about the information needs of patients with cancer (and their relatives and friends). Those needs will vary according to the disease, the stage of disease, the patient and his or her age, social class and culture. Lack of information may lead to increased anxiety and distress, may impact negatively on the patient's satisfaction and may influence a patient's treatment choices. Other articles in this special edition deal with psychosocial interventions and complementary therapies for cancer patients and explore their efficacy. The reality is that these are unlikely to be made available to all cancer patients for reasons of cost and practicability. Information, however, is a relatively cheap intervention that could--and should--be part of standard care. This article explores some of the research about the provision of information for cancer patients.
In January 1998 Karen Parles, a 38 year old librarian at a major New York art museum, learned that she had lung cancer. “My doctors told me it was incurable, that I had only a few months to live,” she recalls. “I'm a lifelong non-smoker, so the whole thing came as quite a shock. I was pretty overwhelmed at first. But as soon as I could, I went on to the internet, looking for information. And I asked all my friends to help.
Patients are increasingly turning to the Internet for information - and a "second opinion" - but pbysicians are skeptical about its usefulness in providing patient education.
Online discussion groups are a relatively new form of informal communication among physicians. Physicians' Online, an Internet-based medical information and communication network with a current membership base that includes more than 200,000, United States physicians, contains extensive bulletin-board discussion areas with more than 47,000 topics posted to date. There are no published data available regarding the characteristics and behaviors of the individuals who participate in these discussions.
To better characterize the users of these groups, in March 1998, we posted an eight-question, multiple-choice electronic survey on Physicians' Online's home page inviting users of the clinical discussion groups to participate.
We analyzed responses from 586 participants. The most common characteristics were: urban and Northeastern United States location, age less than 55 years, clinical practice of internal medicine or one of its subspecialties, private solo or single/multispecialty group practice, and reported weekly consultation with three or less colleagues. Most physicians were interested in specific clinical cases. Forty-one percent of the respondents chose to read discussion groups only but rarely or never initiated or responded.
Younger age, urban setting, private practice, and infrequent consultation with colleagues were the most common characteristics found among users of Physicians' Online's online clinical discussion groups. That specific clinical cases were the most common interest speaks to the notion that discussion groups may represent an attractive resource for helping to manage clinical cases. Future research should explore in greater depth the demographics of users, specific motivations for physician use, ways to improve active participation, and the impact on clinical practice.
A systematic review of medical reports produced only one case of a patient being harmed by the internet, reported Anthony Crocco of Montreal Children's Hospital at last week's meeting.
Crocco and his contributors began their study in response to the huge amount of publicity given to the harm that might be done to people by information about health on the internet that was wrong, incomplete, or impossible to understand.
They expected to find many cases of harm. But having conducted a sophisticated search of five databases, including Medline and Embase, they found only one case—of a patient with lung cancer who had ordered a drug through the internet and died from taking it.
They did find eight papers describing self injury resulting from accurate information on the internet, but the intention had existed before the internet was accessed.
Surprised by their results, Crocco and others wondered whether that meant that the internet had not caused harm, their search had been inadequate, or studies reporting harm had simply not been published. Crocco is, however, a snowboarder, and he was able to find many reports of harm resulting from snowboarding.
Some in the audience suggested that the study reflects the fact that anxiety surrounding the internet is just like the anxiety that surrounds much that is new, including videos, computer games, and—years ago—bicycles and books.
Another member of the audience said that with 50-100 million people using the internet and half looking for health information at some time it was inconceivable that both benefits and harms had not resulted. The important question was to measure both the benefits and the harms.
In the "Internet Age," physicians and patients have unique technological resources available to improve the patient physician relationship. How they both utilize online medical information will influence the course of their relationship and possibly influence health outcomes. The decision-making process may improve if efforts are made to share the burden of responsibility for knowledge. Further benefits may arise from physicians who assist patients in the information-gathering process. However, further research is necessary to understand these differences in the patient physician relationship along with their corresponding effects on patient and physician satisfaction as well as clinical outcomes.
Internet use by physicians and patients has become very popular in Japan. Fifty percent of physicians use the Internet to search for medical and other information. Over the past year, 22% of patients used the Internet to obtain medical information. Because there are no restrictions within Japan on using Web sites to advertise medical treatment, information can be freely sent out, and over the past two or three years this practice has increased dramatically. Internet medical information provides information about illnesses and medications, and it helps improve the quality of life of patients and families.
Yet, depending on the content of the information provided and the way this information is used, there is a potential negative side as well. On principle, users are responsible for the way information is used, but there is a need for information providers to consider users' safety and to make the information effective for use. Because there is no absolute standard for evaluating the value of medical information, it is necessary to establish a system that opens a dialogue with society and that continuously accumulates high-quality information through the collection of various evaluations, rather than rely on an established authority. For industries and organizations related to commercial pursuits, in particular, it is most effective to establish their own codes for ethical conduct, rather than rely on governmental regulations. At the same time, it is important to have a confirmation function to evaluate how goals set by the outside are being implemented.
Aiming at establishing a framework for the Internet medical usage, the Japan Internet Medical Association (JIMA) was founded in 1998 by medical professionals, lawyers, researchers, consumer representatives, patients and their families. We propose a system that would combine feedback from users, who would take on the role of evaluators of the implementation of an ethical code, with a displayed mark that verifies the identity of the Web site. Objective evaluation of information is needed to ensure that users have the power to make choices. Medical experts or patient and family groups would assist in this task. The development of medical care will be promoted through patients and physicians' working together in the accumulation of shared resources for good medical care information.
Many health information providers on the Internet and doctors with email accounts are confronted with the phenomenon of receiving unsolicited emails from patients asking for medical advice. Also, a growing number of websites offer "ask-the-doctor" services, where patients can ask questions to health professionals via email or other means of telecommunication. It is unclear whether these types of interactions constitute medical practice, and whether physicians have the ethical obligation to respond to unsolicited patient emails.
To improve the quality of online communication between patients and health professionals (physicians, experts) in the absence of a pre-existing patient-physician relationship or face-to-face communication, by preparing a set of guiding ethical principles applicable to this kind of interaction.
Systematic review of the literature, professional, and ethical codes; and consultation with experts.
Two different types of patient-physician encounters have to be distinguished. "Traditional" clinical encounters or telemedicine applications are called "Type B" interactions here (Bona fide relationship). In comparison, online interactions lack many of the characteristics of bona fide interactions; most notably there is no pre-existing relationship and the information available to the physician is limited if, for example, a physician responds to the email of a patient who he has never seen before. I call these "Type A" consultations (Absence of pre-existing patient-physician relationship). While guidelines for Type B interactions on the Internet exist (Kane, 1998), this is not the case for Type A interactions. The following principles are suggested: Physicians responding to patients' requests on the Internet should act within the limitations of telecommunication services and keep the global nature of the Internet in mind; not every aspect of medicine requires face-to-face communication; requests for help, including unsolicited patient questions, should not be ignored, but dealt with in some appropriate manner; informed consent requires fair and honest labeling; health professionals and information providers must maintain confidentiality; health professionals should define internal procedures and perform quality control measures.
Different media are appropriate at each point on the continuum between dispensing general health information and handling patient problems that would require the practice of medicine to solve. For example, email is a sufficiently capable medium for giving out general health information, while diagnosis and treatment usually requires at least advanced telemedical technology. Patients have to be educated that it is unethical to diagnose and treat over the Internet in the absence of a pre-existing patient-physician relationship, and if the interaction is limited to a single email. More research is needed to establish more evidence regarding situations in which teleadvice is beneficial and efficient.
The Internet offers consumers unparalleled opportunities to acquire health information. The emergence of the Internet, rather than more-traditional sources, for obtaining health information is worthy of ongoing surveillance, including identification of the factors associated with using the Internet for this purpose.
To measure the prevalence of Internet use as a mechanism for obtaining health information in the United States; to compare such Internet use with newspapers or magazines, radio, and television; and to identify sociodemographic factors associated with using the Internet for acquiring health information.
Data were acquired from the Second Osteopathic Survey of Health Care in America (OSTEOSURV-II), a national telephone survey using random-digit dialing within the United States during 2000. The target population consisted of adult, noninstitutionalized, household members. As part of the survey, data were collected on: facility with the Internet, sources of health information, and sociodemographic characteristics. Multivariate analysis was used to identify factors associated with acquiring health information on the Internet.
A total of 499 (64% response rate) respondents participated in the survey. With the exception of an overrepresentation of women (66%), respondents were generally similar to national referents. Fifty percent of respondents either strongly agreed or agreed that they felt comfortable using the Internet as a health information resource. The prevalence rates of using the health information sources were: newspapers or magazines, 69%; radio, 30%; television, 56%; and the Internet, 32%. After adjusting for potential confounders, older respondents were more likely than younger respondents to use newspapers or magazines and television to acquire health information, but less likely to use the Internet. Higher education was associated with greater use of newspapers or magazines and the Internet as health information sources. Internet use was lower in rural than urban or suburban areas.
The Internet has already surpassed radio as a source of health information but still lags substantially behind print media and television. Significant barriers to acquiring health information on the Internet remain among persons 60 years of age or older, those with 12 or fewer years of education, and those residing in rural areas. Stronger efforts are needed to ensure access to and facility with the Internet among all segments of the population. This includes user-friendly access for older persons with visual or other functional impairments, providing low-literacy Web sites, and expanding Internet infrastructure to reach all areas of the United States.