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- [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 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. 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 Institute 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 CANCER-L@WVNVM and CLAN (Cancer Liaison and Action Network on CLAN@FRMOP11). 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." There were several helpful replies. This came from a member in the United States: "In response to the request for information on treatment for leukemia, I recommend that you access CancerNet, the National Cancer Institute's mail server on the Internet which provides current information on treatment for leukemia. To request the Contents List and Instructions, send a mail message to [email protected] (Internet address) cancernet%icicb.nci.nih.gov@nihcu ( BITNET) Leave the subject line blank, and in the body of the mail message, enter "HELP". When you receive the Contents list, request the statement for Adult Acute Lymphocytic Leukemia (cn-101024). There are also News and General Information items, under the Heading PDQ Database Information in the Contents List which provide information on centers which have access to Physician Data Query, NCI's database of cancer treatment information which includes clinical trials information for leukemia. - Cheryl." CancerNet is the U.S. National Cancer Institute's international information center. It is a quick and easy way to obtain, through electronic mail, recommended treatment guidelines from the National Cancer Institute's Physician Data Query system. To access CancerNet, send email to: [email protected] Leave the subject line blank. In the body of the mail message, enter HELP to receive instructions and the current contents list. The National Cancer Center in Tokyo Japan has a gopher service at gopher.ncc.go.jp. The World Health Organization (WHO) has one at gopher.who.ch. Disabilities ------------ Bulletin boards and online conferences give equal access to all persons. Everybody is treated the same way, regardless if they sit in a wheel chair, have a hearing impairment, stutter, cannot speak clearly, have difficulties in thinking or acting quickly, or just have a different looks. You need not worry about typing errors. Those who read them will never know whether it's because you never learned how to write on a computer, or if it is because you have difficulties in controlling your movements. You alone decide if others are to know about your personal disability. If you want it to be a secret, then it will remain a secret. Nobody can possibly know that you are mute and lame from the neck and down, that computer communication is your main gate into the outer world, and that you are writing messages with a stick attached to your forehead. Therefore, the online world has changed the lives of many people with disabilities. Computer communications have opened a new world for those who are forced to stay at home, or thinks that it is too difficult to travel. Those who can easily drive their car to the library, often have difficulties in understanding the significance of this. Usenet has alt.education.disabled and misc.handicap. It covers all areas of disabilities, technical, medical, educational, legal, etc. UUCP has handicap. It is presented in the following words: Contact: [email protected] Purpose: The Handicap Digest provides an information/discussion exchange for issues dealing with the physically/mentally handicapped. Topics include, but are not limited to: medical, education, legal, technological aids and the handicapped in society. CompuServe's Disabilities Forum has the following sections: General Interest, Develop. Disabilities, Emotional Disturbances, Hearing Impairments, Learning Disabilities, Vision Impairments, Mobility Impaired, Rights/Legislation, Education/Employment and Family Life/Leisure. [email protected] is devoted to the developmentally disabled, their teachers, and those interested in this area. The list BLIND- [email protected] focuses on "Computer Use by and for the Blind." [email protected] is a mailing list discussing "Speech disorders." [email protected] is the "Deaf Discussion List," and [email protected] the "Deaf-Blind Discussion List." STUT-HLP ([email protected]) is a support forum for people who stutter and their families. On [email protected], the focus is on Technology for the handicapped. [email protected] discusses research on low back pain disability. The Handicap Digest is an electronic mail only digest of articles relating to all types of issues affecting the handicapped. The articles are taken from the Usenet newsgroup, the Handicap News. (misc.handicap) and various FidoNet conferences such as ABLED, BlinkTalk SilentTalk, Chronic Pain, Spinal Injury, Rare Conditions, and several others. Subscribe by email to [email protected] Handicap.shel.isc-br.com (129.189.4.184) is the email address to an anonymous ftp site that has disability-related files and programs. The disk has some 40 directories with 500 or so files covering all types of disabilities. (This service can be used through FTPMail. See chapter 12 about how to do this.) Getting old ----------- BITNET has the "BIOSCI Ageing Bulletin Board" on AGEING@IRLEARN . Usenet has bionet.molbio.ageing, while CompuServe's Issues Forum has a message section called "Seniors." Ageline on Dialog is a database produced by the American Association of Retired Persons. It does an excellent job covering research about older persons, particularly on consumer issues and health care, by summarizing journal articles and the contents of other published reports. While our "face-to-face" world sometimes makes it difficult for older people to participate in discussions between young people, this is not so in the Online World. All people are treated the same way. It is impossible for others to know your age, unless someone tells them. Holistic Healing and Health --------------------------- HOLISTIC on [email protected] is dedicated to "providing information and discussion on holistic concepts and methods of living which provide a natural way of dealing with the challenges of life." Here are some topics dealt with in this forum: Various Dimensions of Holistic Healing and Health States of Consciousness Meditation and the role it plays in spiritual/physical health The impact of a healthy diet - including Herbs and Vitamins Bodywork - such as Rolfing, Trager bodywork, Reichian, etc. Acupuncture/pressure Hypnosis and Biofeedback Visualizations and Affirmations Spiritual Healing - Psychic healing methods Bioenergetics The holistic connection between mind and body Honest discussion of topics relevant to personal/spiritual growth - And anything else within context for the betterment of the world. The following message is typical: From: Helen Subject: Re: Asthma and Sinus Problems To: Multiple recipients of list HOLISTIC My condolences to fellow people allergic to cats. Cats and strawberries are two of the most allergenic substances. Behavorial changes have proven to be EVERYTHING to me. The techniques I've employed have helped many others. First, try sleeping at a 45 degree angle. This usually requires piling up pillows. The elevation of the head facilitates drainage from the sinuses. When the situation gets really bad, I've slept sitting up on a couch or arm chair propped up by numerous pillows and cushions. This technique can take some getting used to, but, it works like a charm and is kinder to your system than drug therapy. Second, try "ephedra" tea. This is an herb found in Chinese herb shops. Ask the herbalist how to prepare it. I highly recommend the book "Natural Health, Natural Medicine" by Andrew Weil, M.D. of U of A Med School in Tucson. See pages 253-256 for more information on asthma. Fourth, stay hydrated. This means not only drinking PLENTY of fluids, but humidifying the house (that is if you're not also allergic to molds). Basic behavorial techniques are important....diet, exercise, etc. etc, ...but this is the holistic network...I'm preaching to the choir... Finally, take heart! Being allergic to cats is not well received by cat lovers...often we're cat lovers ourselves. Depending on the breed of cat, there is a good chance you will eventually habituate to those you are around over the long term. Good luck, the advice about sleeping with your head significantly elevated is the best I have ever given out to fellow sinus problem sufferers. It really works!! Helen. HomeoNet, a service of the Institute of Global Communications (IGC), is for those interested in homeopathic medicine. List of health science resources -------------------------------- The Bitnet/Internet online list of health science resources is available by email from: [email protected] . Send the following command: GET MEDICAL RSCRS This will give a long list of BITNET, Internet, and Usenet forums, data archives, electronic newsletters and journals devoted to health science. Here are some examples from the list that may be of interest to people not working in the health profession: * [email protected] - a discussion list for Alcohol and Drug Studies, * [email protected] - Behavioral and Emotional Disorders in Children, * [email protected] is the "Open Discussion forum for DIABETIC patient counseling," * [email protected] (or [email protected] through the Internet) is a forum for information exchange and discussions on all aspects related to diseases, disorders, and chemicals that cause diarrhoea in humans and animals, * [email protected] - Support and Discussion of Weight Loss * [email protected] - Drug Abuse Education Information and Research, * [email protected] - Marital/family & relational communication. * [email protected] - Wellness, Exercise, Diet, for exchanging ideas, tips and any type of information about wellness, exercise, and diet. * [email protected] - Vegetarian Discussion. * [email protected] - Medicinal and Aromatic Plants discussion. * [email protected] - Multiple Sclerosis Discussion and Support. * [email protected] - Dental Amalgam Fillings and chronic mercury poisoning. * [email protected] - Exercise and Sports Psychology. * talk.abortion on Usenet. These mailing lists usually let you search old messages for topics of interest. They are both living discussion forums and interesting searchable databases! Mednews is a weekly electronic newsletter. Its columns bring regular medical news summaries from USA Today, Center for Disease Control MMWR, weekly AIDS Statistics from CDC, and more. Send the following command to [email protected] to subscribe: SUB MEDNEWS Your-first-name Your-last-name