Chapter 6: Your personal HealthNet ==================================
Health is a concern in most families. Where a family member or a friend is suffering from cancer, AIDS, a serious disability, or a rare disease, finding help is imperative. Fortunately, there are many sources of information for those who want to know more. There are clubs and forums, where you can meet others with the same disease or problem. They are open 24 hours a day. Those who cannot sleep at night, can log in any time to "talk" with others. The social aspect of joining a club is important. However, it may be equally important to learn from other people's experiences with alternative treatment methods, doctors, medicines, and to get practical medical advice. Here are some examples to illustrate the width of the offering:
AIDS —— You may start with "The Fog City Online Information Service" in San Francisco, the world's largest bulletin board of AIDS information. The cost of using this BBS from afar may be reduced considerably by using i-Com or similar data transport services (see chapter 13). CompuServe has a Human Sexuality Forum and a MEDSig with associated file libraries. It also has a surcharged ZiffNet database with full-text articles about health topics (Health Database Plus). On the Well, enter "g aids". NewsNet has the newsletters "AIDS Weekly" and "AIDS Therapies." The latter is a directory, updated monthly, with descriptions of standard and experimental treatments for AIDS, along with a guide to treatments for the opportunistic infections (OI) of AIDS. It incorporates all existing and potential new AIDS treatments in one place. On BITNET, check out "AIDS/HIV News" (AIDSNEWS@EB0UB011) and the mailing list on AIDS@EB0UB011. Usenet has sci.med.aids (AIDS: treatment, pathology/biology of HIV, prevention), bionet.molbio.hiv, clari.tw.health.aids (AIDS stories, research, political issues), and bit.listserv.aidsnews. If you do not have access to Usenet, send a message to aids- request@cs.ucla.edu for articles from AIDSNEWS, statistics and news summaries. Aids-stat-request@wubios.wustl.edu is another source of current AIDS statistics. Send a request to info-aids@rainbow.UUCP. It is a clearinghouse of information, and discussion about alternative treatment methods, political implications, and more.
Example: Kidney disease ———————————- In chapter 1, I told you that my wife has a rare disease called Polycystic Kidneys. Here are more details about what happened during the "online health trip" to CompuServe with her doctor:
The command "GO HEALTH" gave the following menu:
1 HealthNet
2 Human Sexuality
3 Consumer Health
4 NORD Services/Rare Disease
Database
5 PaperChase (MEDLINE)
6 Information USA/Health
7 Handicapped User's Database
8 Disabilities Forum
9 Aids Information
10 Cancer Forum
Another menu, which listed available "PROFESSIONAL FORUMS," had choices like AAMSI Medical Forum and Health Forum. Besides visiting these, we searched several medical databases. Menu selection five gave us The National Library of Medicine's database (MEDLINE), which is full of references to biomedical literature. This database had more than five million references to articles from 4.000 magazines from 1966 and up to date, when we searched it in 1991. It increases by some 25.000 new references per month. Easy navigation by menus. Easy to search. The AAMSI Medical Forum (MedSIG) is sponsored by The American Association for Medical Systems and Informatics (AAMSI). It is a forum for professionals within health care, people within associated technical fields, and ordinary CompuServe users. The members meet to find, develop and swap information. MedSIG has a library full of programs and information files. This is an example of what you can find there:
ATLAS.ARC 21-Sep-88 30161
Keywords: STEREOTAXIC STEREOTACTIC STEREOTAXIS ATLAS THALAMOTOMY
MAP FUNCTIONAL GIF
This contains several of the most useful stereotaxic maps from the Schaltenbrand and Wahren Atlas in GIF format. If you can get GIF into your CAD or drawing program, you can scale the maps to fit your individualized patient's AC-PC distance, thereby generating a customized map for your patient.