Health Gateway Program  

At Tutu's House

“Exploring health information on the Internet"

Getting Medical Advice and Moral Support  on the Web

Patients are leading a revolution in health care by establishing self-help communities on the Internet. These online networks, each devoted to a specific topic, provide technical medical information, practical coping tips, emotional support, and online second opinions. And they encourage patients to play a very responsible role in their own health care.

Online support communities are available to anyone who has access to an Internet-connected computer. Most are free, and many include volunteer health professionals who are experts on the condition being discussed. If you are coping with an illness or want to exchange views about a medical subject, you will want to find your way to newsgroups, Listserv mailing lists and to medical sites that allow you to ask medical specialists health questions.

A Newsgroup is 1) an electronic public bulletin board, where anyone can post messages that can be read by anyone in the world;  2) a communication medium that allows people throughout the Internet to discuss issues of mutual interest; and 3) a venue to access an expert on a variety of topics. Newsgroups are used much like e-mail. A message is sent to the newsgroup, and messages are received from the newsgroup. By using newsgroups, the message is available to anyone who chooses to read that newsgroup. When reading a newsgroup, you'll see every message sent to that newsgroup from anywhere on the Internet.

Listserv is a list manager that enables people with e-mail access and a common interest, to be grouped together into lists. Individuals interested in a specific topic can subscribe to a list that deals with that topic; then, they converse (via e-mail) with others who share that interest. Whenever mail is sent to a list, the Listserv automatically distributes copies to all of the list subscribers. The sender does not need to know the names or the network address of all the subscribers since that information is maintained by Listserv.

In cyberspace information and/or someone is always available. You can search for an insomnia treatment at 3:00 a.m. You can ask as many questions as you like. And you can, under the cover of anonymity, ask any question, no matter how embarrassed you would be in real life. The veteran online “self-helpers” of today, spend much of their time online exchanging experiences, opinions, information, and mutual support with others who share their special health concerns.

For those with little experience communicating online, the very idea that you might be able to have a meaningful interaction with others by exchanging typed messages via computer may sound ridiculous. But participants are much more than online strangers. Knowing that others within the group are walking on the same path, and have come to give and receive support, helps most online self-helpers feel comfortable sharing even the most intimate feelings. Participants often say they can share feelings on their favorite self-help forums they could never discuss at home, even with their closest friends and family. These groups often become an essential part of their members’ social support system.

The problem, of course, is the reliability of the answers you may get. Anyone can publish a Web site, and currently there are no quality controls governing online medical advice. Before you share too much personal information over the Internet, remember you can’t be sure a fellow cybersurfer is telling the truth about being a cancer survivor or a physician. And obviously, a lay person shouldn’t try to diagnose an illness through online sources. If you think you’re sick, seek professional medical advice. However, the Internet does have an abundance of information about health and wellness, and a few guidelines can help you to target reliable Web sites.

A good starting point is a search engine designed to catalog medical Web sites. Healthfinder (http://www.healthfinder.gov/) is a health and human services information web site from the United States government. Healthfinder can lead you to selected online publications, clearinghouses, databases, web sites, and support groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

How can you make sure the information is credible? One sign to watch for is the seal of approval from the Health on the Net Foundation (http://www.hon.ch/MedHunt/), a nonprofit organization based in Geneva. The group was founded in 1995 during a conference of international medical experts. To earn the Health on the Net emblem, which about 1,300 health sites currently have, a Web site must follow the group’s principles and guidelines. The site offers ways for individuals to communicate with others with similar interests and concerns, find testimonials to help understand various health related issues, and monitor general activity in the health field.

Chat rooms and electronic bulletin boards give people who are isolated a chance to mingle. That was the draw for a 31 year old woman who suffers from prolonged depression. The woman spends more than 15 hours a week in the forums hosted by Mental Health Net (http://www.cmbc.com), which is run by CMHC Systems Inc. of Dublin, Ohio, and lists about 7,000 professionally screened, mental health sites. The support she receives from the forums gives her confidence and relieves her sense of isolation felt during depression. The woman sometimes offers advice to others with similar problems. She shares the tools she learned from her therapist and is able to empathize with others.

Information for this article is taken from The Wall Street Journal Interactive Edition for April 30, 1998  and an article by Tom Ferguson in The Futurist November-December 1997 issue, “Health Care In Cyberspace: Patients Lead a Revolution.”

Ask Medical Specialists Health Questions:

Ask Dr. Bob (http://www.tripod.com/explore/health_fitness/) Rob Jandl, assisted by a panel of physicians, answers users’ health questions. Browse the archives or ask a question of your own.

Ask Dr. Simon (http://www.tripod.com/health) and Ask Dr. Weil (http://cgi.pathfinder.com/drweil/), holistic doctors, answer questions regarding complementary medicine.

Go Ask Alice (http://www.alice.columbia.edu/) is an interactive question and answer service on health for young people from Healthwise, the Health Education division of Columbia University Health Services.  

Ask the Expert (http://www.druginfonet.com/askdoc.htm), a physician or a pharmacist, a medical question. But it’s still not substitute for an “in-the-flesh” doctor’s visit.