Invited Symposium: Integrated Telematic Services and Communication Through Scientific IRC: Virtual User Communities of Biomedicine in UNInet
AIDS is associated to a large extent to drug addiction, sexual promiscuity, social and family conflicts and rootlessness. Patients suffering from AIDS are usually shunned by the public. Fighting the disease has been half the battle. The other half has been fighting the social stigma attached to it. This is the reason why this disease, now among the main causes of mortality in youth, often leads to frustration and guilt feelings in patients. As a matter of fact, the reluctance of HIV positive drug-addicts to be identified as such is well known (Ezzy et al. 1988, Heckman et al. 1988). In this respect, Internet turns out to be an invaluable tool for these patients, due to its anonymous character.
AIDS and Computer-based Services
Some projects have been worked out in order to improve the communication with and between risk groups and at the same time offer better attention and information. The common features to all of them is the use of computer-based networks and/or Internet. Among them we can mention Children's Hospital Los Angeles (CHLA) that provides an integrated care model for youth with a high risk for human immunodeficiency virus (HIV) infection. A key part of the model is to provide health services within a general medical clinic for the youth where participation in the clinic does not serve to identify an adolescent to his or her peers in the waiting room as having HIV. The project, in the last 2 years, has provided outreach to 8400 youths at risk and has provided clinical services to 296 young men (16.6% HIV positive) and 352 young women (9.1% HIV positive). Situated within the Division of Adolescent Medicine at Children's Hospital Los Angeles, the project consists of a general medical clinic along with psychosocial services including case management, counseling, and related ancillary services. Another key part of the model is to provide extensive outreach within the community including contacts at bars and social clubs where high-risk youth congregate, on the street, and through the social networks of youth already identified as having HIV who participate in the CHLA clinics. The program also has developed a Computer-Assisted Adolescent Referral System (CAARS), available on diskette and on the Internet, for the referral of the teens to services in the Hollywood area (Schneir et al. 1998).
The Chicago AIDS Outreach Project, which was supported by the National Library of Medicine, is an effort to link the programs and services of the Chicago Library of the Health Sciences at the University of Illinois and the Midwest AIDS Training and Education Center with the clinic services of community-based organizations in Chicago. The project was designed to provide electronic access to AIDS-related information for AIDS patients, the affected community, and their caregivers. The project also provided Internet access, training and continued access to library resources. The successful initiative suggests a working model for outreach to health professionals in an urban setting (Martin et al. 1997).
People suffering from AIDS are subject to frequent hospitalizations. In some cases, they cannot go back home after being hospitalized, due to the severity of the illness, family or sociologic problems. This is the reason why some therapeutic flats are at their disposal to make their medical follow-up easier after the hospital's discharge. For this purpose, Kulik et al. (1997) from CERIM, Faculty of Medicine, University of Lille 2, France, included these flats in the regional Telemedicine AIDS network to give these physicians free access to computerized multimedia medical record of their patients and to provide them with synchronous co-operation facilities.
Uninet, (http://www.uni-net.org) the integrated telematic service network for virtual user communities also join this type of enterprises. Even t hough there is not a definite group of users suffering from this pathology, the channel #biomedicina occasionally serves as a meeting point for patients of high risk teens, therapists and caregivers. Unselfish collaboration from these specialists in sharing medical information and offering emotional support is invaluable.
Discussion groups on several medical specialties and data bases for AIDS and other communicable diseases are operating since 1989 (Parsons 1989). Information about AIDS can be obtained through the phone, via an internet service provider, mostly in English. In UniNet, aside from the specific help mentioned above, a series of on-line talks, conferences and debates have been carried out. Log files are available through Internet at all times. Samples of these can be found in:
These spontaneously-conceived activities have been done by therapists, AIDS patients, ex-addicts, patients' relatives, psychologists, public health specialists and others from countries such as Spain, Peru, Switzerland, etc. It should be emphasized however that we do not deal with prognosis or treatment areas, limiting ourselves to informative and supportive issues. So far the working language has been Spanish.
This task is closely related to other well founded experiments in nursing through computer networks. New technologies such as those may provide mechanisms to relieve the burden on traditional services, while opening new ways to meet the unique needs of home-based patients in a timely and effective manner. The use of home-based computers to support persons living with AIDS/ARC started in this decade (Brennan et al. 1991). Computer networks can enhance the nurses' ability to intervene with clients experiencing clinical problems. For instance, ComputerLink is a computer network designed to provide home-care support to persons living with acquired immune deficiency syndrome (AIDS) and AIDS-related complexes in the community. In the pilot study, the authors demonstrate the feasibility of using home-based computer networks to provide information, communication and decision assistance to persons living with AIDS (Ripich et al. 1992).
At the HIV Program of Palo Alto V.A. Medical Center, the people living with AIDS (PLWA) and the caregivers of persons with AD were similar in their adaptation to the computer network as a communication medium with nurses. Nurses have historically intervened with groups, also with a computer network with groups. Computer networks can enhance the nursing ability to intervene with clients experiencing clinical problems. The benefits of this technology to nurses are numerous: they can access clients in an efficient yet supportive manner; they can respond to multiple levels of need in multiple clients; and they can attend to emotional as well as the more concrete needs of clients. The benefits to clients are also numerous: they have the opportunity to be supported in self-care efforts versus being in a more dependent role; they can use the system at a time, frequency, and duration of their choice; and they can engage in a normalization of their experiences (Ripich et al. 1992).
The role of computer-based resources in health promotion and disease prevention, particularly for college health, is developed by the California College Health 2000 at San Diego State University in California. This project is collaborating with the university's student health center to develop a computer-based resource to provide hypertext links to specific health information, helpful to health promotion planners and consumers. The project's virtual resource centers are organized around health topics and seek to encourage the dissemination of health information to the broadest possible constituency of college health professionals and are designed to provide for continuous feedback and to evolve over time (Fulop and Varzandeh, 1996).
Internet and Drug Addiction Issues
The use of the Internet for addiction education, combining network therapy with pharmacotherapy, is in an experimental stage at the Division of Alcoholism and Drug Abuse of the Department of Psychiatry, New York University Medical Center, New York (Galanter et al. 1997). It is essentially a course in addiction psychiatry for the Internet that combines a psychosocial and a medication modality for alcoholism; namely, network therapy and naltrexone. This result suggests the feasibility of using the Internet as a vehicle for teaching in addiction psychiatry, an area where needs for training are often unmet. (Galanter el al. 1998). The Internet is becoming a valuable communications and information resource for the anti-tobacco movement, (Miller and Wisniewski, 1996), hallucinogenic plants (Micke, 1996) and others.
The Medical Informatics Group of the School of Medicine at the University of Missouri-Columbia has carried out the analysis of clinical trials of interactive computerized patient education. A systematic review of randomized clinical trials was conducted to evaluate the acceptability and usefulness of computerized patient education interventions. The Columbia Registry, MEDLINE, Health, BIOSIS, and CINAHL bibliographic databases were searched. All studies, except one on the treatment of alcoholism, reported positive results for interactive educational intervention. Computerized educational interventions can lead to improved health status in several major areas of care, and appear not to be a substitute for, but a valuable supplement to face-to-face time with physicians. ( Krishna el al. 1997).
The studies from the Health Administration Program, Cleveland State University, at Ohio, on computer services for patients suggest that computer services have little impact on patients' health status but a significant impact on the use of these services. Some computer services (eg, as reminders) increase client visits and other services (eg, voice bulletin board) reduce clinic visits ( Alemi and Stephens 1996a).
About the electronic self-help and support groups, Alemi et al. (1996b) examined the impact of a voice bulletin board. A quasi-experimental design with matched control group and observations before and after intervention were carried out. The subjects, 53 pregnant women who abused drugs, participated in the voice bulletin board. Clients in the control group were asked to participate in biweekly face-to-face meetings. The study concluded that voice bulletin boards may be an effective method of providing support to mothers who have a history of drug use. The utilization of these services may lead to lower costs without worsening patients' health. Members of the experimental group reported significantly lower rates of visiting outpatient clinics than members of the control group.
A randomized trial of a telecommunications network for pregnant women who use cocaine, was also conducted. Almost all patients used the computer services to some extent, but there seems to be a threshold after which the use of services had a more positive impact. (Alemi et al. 1996c). Also this group analyzed the impact of home health education by studying the impact of a computer service called Community Health Rap (Alemi et al. 1996d).
Among the pregnant women who abuse drugs, they compared the differences between those who used the service and those who did not with the following result: almost half (45%) of poor, undereducated subjects who lived in inner urban areas used the computer service. The data suggests that expansion of information services to households will not leave the poor and the undereducated population groups 'behind'. They will use computer services, though such services may not have an impact on their health status or cost of care.
So far UniNet makes use of text-based communication since the bandwidth available for most users does not allow a live communication through voice or videoconference. Occasionally some voice-assisted utilities have been used by people with disabilities to avoid typing. Nonetheless we believe that the final results do not differ much with the ones that would be reached by other more sophisticated means such as audioconference. We are also aware that any improvement in this direction will undoubtedly translate into a better service in health promotion in general and to patients in particular. According to Mechanic (1998), training in communication skills; creative uses of the Internet and videotape technologies; improved 'customer service' programs; critical pathways for patients; and special educational aids promise to be useful, but they require careful development and evaluation.
The Internet has become a part of many people's daily environment and has the potential to provide information and support for men and women affected by HIV. Although there are a large number of Internet sites related to HIV, only a few are designed for women. Future research might look into how Internet sites related to HIV are perceived by the women who use them, and how these sites might be improved to meet their needs. Brettle (1997), Mallory (1997) and others provide a personal selection of some initial sites including HIV/AIDS sites together with brief descriptions of their contents in the areas of general medicine, infectious diseases and travel-related medicine.
The Internet is rapidly expanding as an environment for electronic communication and resource sharing. This relatively new type of service on the Internet provides access to a wealth of information resources through a simple point-and-click interface. Available resources of interest to physicians in the World Wide Web include bibliographical and statistical databases, literature reviews, discussion groups, press releases, newsletters, drug information, self-assessment questionnaires, multimedia textbooks, clinical decision aids, educational software, and much more. Physicians working at home can gain access through a personal computer linked by a modem to a telephone line, just by subscribing to an Internet service provider (Klemenz and McSherry 1997).
In the case of UniNet, a wide selection of on-line bibliographical resources in several fields are offered and addressed to specialists, patients and caregivers. They can be found at the address http://bio.hgy.es/recursos/recmed/. This formidable task has been made possible by the unselfish and altruistic work of several volunteers who have invested many man-hours into its development.
AIDS info available over phone, Internet [news] CMAJ. 1996; 155: 1467
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|Cano, C.; Legarza, JP; Fanton, C; Bouza, S; Porres, L; (1998). AIDS, Drug Addiction and Internet. Presented at INABIS '98 - 5th Internet World Congress on Biomedical Sciences at McMaster University, Canada, Dec 7-16th. Invited Symposium. Available at URL http://www.mcmaster.ca/inabis98/coma/cano0570/index.html|
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