The Online World Part 11

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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 ill.u.s.trate 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 s.e.xuality Forum and a MEDSig with a.s.sociated 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" ([email protected]) and the mailing list on [email protected]

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- [email protected] for articles from AIDSNEWS, statistics and news summaries.

[email protected] is another source of current AIDS statistics. Send a request to [email protected] 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 s.e.xuality 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 a.s.sociation for Medical Systems and Informatics (AAMSI). It is a forum for professionals within health care, people within a.s.sociated 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.

CompuServe has many programs for reading GIF files, and converting GIF files to other graphical formats.

Through IQuest, we searched medical databases. Simple menus helped define relevant search terms. When done, IQuest searched selected databases for us, and presented the finds on our local computer screen.

The basic rate for completing the search was US$9.00. In addition, we paid the normal fees for using CompuServe. From Norway, this amounted to around US$ 40/hour at 2400 bps when logging on through the local Infonet node at that time. Today, it costs less.

This gave us up to 10 article headlines, when searching in bibliographic databases. Abstracts of selected articles were displayed on our screen for an additional US$2.00.

We used the search mode "SmartScan" in the area "Medical research." IQuest searched several databases with a minimum of manual intervention.

First, it told us that the following databases would be included in the search:

BRS databases: Ageline - Contains references to and abstracts of materials on aging and the elderly. Covers psychological, medical, economic, and political concerns.

AIDS Database - Includes critically selected articles covering all aspects of AIDS, (Acquired Immune Deficiency Syndrome), and AIDS-related research.

AIDS Knowledge Base - Provides an online textbook of the most current information on AIDS available from San Francisco General Hospital.

Combined Health Information Database - For professionals, patients, and the general public, CHID contains references to a variety of materials on arthritis, diabetes, health education, digestive diseases, and high blood pressure. Provides abstracts.

Embase - Includes extensive abstracts of articles related to biomedicine from medical journals worldwide. About 40% of the references are online only.

Rehabdata - Covers articles, books, reports, and audiovisual materials dealing with the rehabilitation of the physically and mentally handicapped. References only.

Sport Database - Indexes publications dealing with sports, including training, medicine, education, and history. Drawn mostly from English and French with technical articles from other languages.

Dialog databases: BioBusiness - Deals with the business aspects of biotechnology and biomedical research. Draws from BIOSIS and MANAGEMENT CONTENTS.

BIOSIS Previews - Provides international coverage of all aspects of biological science.

Cancerlit - Monitors articles from journals and other technical publications dealing with all aspects of cancer research throughout the world. Includes abstracts.

Clinical Abstracts - Covers human clinical study articles of major importance selected from leading medical journals. Includes all aspects of clinical medicine. Corresponds to Abstracts in Internal Medicine. Abstracts available.

Life Sciences Collection - Abstracts technical literature in the life sciences from journals and other scientific publications worldwide.

Medline (1966 - to date) - Indexes articles from medical journals published worldwide. Corresponds to Index Medicus, International Nursing Index and Index to Dental Literature. Includes abstracts in roughly 40% of the records.

SciSearch - Monitors worldwide literature across a wide range of scientific and technological disciplines. Produced by the Inst.i.tute for Scientific Information (ISI).

Then we entered our search term: "LIVER AND CYST/". The search word "CYST/" signified that "cyst" should match any words starting with these four characters.

While searching, IQuest gave the following progress report:

Scanning BRS databases.

Accessing Network...........Completed.

Accessing Database Host.....Completed.

Logging on..................Completed.

Logging on (second step)....Completed.

Selecting Databases.........Completed.

Each period equals one line of scanned data. This may take several minutes................................

It continued in the same way with a "Scanning Dialog databases."

When the search results were presented, we glanced quickly at the article abstracts, ordered two articles to be sent us by mail and typed BYE.

CompuServe reported "Off at 09:12 EST 17-Nov-88 Connect time = 0:35." The two articles arrived Norway by mail a few weeks later.

The whole trip, including visits in medical forums, took 35 minutes. The cost, including local telephone and network charges, was US$95. Of this total cost, the extra cost of searching through IQuest amounted to US$54.00. We all felt that the costs were well justified.

| A note about the costs: The online tour was done manually, | | using full menus. We discussed our search strategy while | | connected, which is more expensive than logging off to plan | | the next moves. Also, note that the extra cost of searching | | IQuest ($54) was not time dependent. |

Right now? I have promised to donate one kidney to my wife when the time comes. This has prompted me (1993) to join a mailing list for "Organ transplant recipients and anyone else interested in the issues" ([email protected]).

Cancer ------ FidoNet has the forum CARCINOMA (Cancer Survivors). BITNET has the discussion lists [email protected] and CLAN (Cancer Liaison and Action Network on [email protected]). CompuServe has a Cancer Forum. NewsNet offers the newsletter CANCER RESEARCHER WEEKLY.

In September 1992, the following message was posted on CANCER- L by a member from Brazil:

"A close friend was just diagnosed with acute leukemia of a type called calapositive pre-B linphoplastic. It is supposedly an early diagnosis since he is not anemic. We are very shocked but he is reacting quite bravely and all he wants is to have access to literature on his condition. Are there any new genetic engineering developments effectively clinically available? What is the present state of knowledge regarding this specific form of leukemia?

He was diagnosed three hours ago, is 48 yrs old, and will start chemotherapy tomorrow. He was informed that chemotherapy is quite effective in this type of leukemia. But we wonder if there isn't a possibility to use gene therapy.

Any help will be greatly appreciated. - Dora."