By Sean Eads
Originally published in Body Sense magazine, Spring/Summer 2005.
Have you ever felt overwhelmed by too much information on the Internet? Have you ever despaired over the lack of a “human touch” in otherwise valuable data?
When it comes to taking care of ourselves and seeking out healthcare information, we’re often confronted with numerous obstacles. Most of us find interpreting medical information difficult. The language can be intimidating, and oftentimes we’re researching conditions because they have either struck us or someone we love.
The human element can’t be overlooked when it comes to seeking health information on the Web. Even very professional and authoritative websites can seem cold and clinical. That’s because their authors forget there’s a big difference between looking for information and looking for answers. When illness strikes either our loved ones or ourselves, reading about the facts of that illness often isn’t enough. These facts constitute information, but they are not necessarily answers. Answers are how the facts might apply to our own situation; answers are facts relayed in stories, anecdotes, and shared experiences. To a person thrown into tumult by sudden disease, there is a big difference between reading about a potential drug cure and reading the thoughts of someone who is recovering because of that drug.
It is never recommended that people replace a doctor’s visit with a website or database. But seeking additional medical information is an important part to helping you understand choices and options. In addition to some trustworthy online resources such as Medlineplus.gov, Healthfinder.gov, and MedicineNet.com, there are other Internet resources that can help you with the answers.
Besides websites, two of the most popular ways of communicating on the Internet are chat rooms and message boards. Chat room exchanges take place in real time and can involve hundreds of people participating simultaneously as they type out what they want to say. Like a noisy café, all conversations occur immediately with instantaneous and unregulated responses. Message boards are slower and more relaxed; the exchange of information on them can take place over days, weeks, even months. Many message boards are
moderated, which means they have people to regulate the conversation by enforcing rules. In many ways, moderators ensure quality control by keeping discussions focused and civil.
The nice thing about message boards is they allow you to make more thoughtful responses. You can read a message and respond to it a week later. This is terrific if you’re doing research, but it’s also great if you happen to be ill. Someone might post a message discussing his fear of entering the hospital and then follow up that message days later after the experience. Message boards are also great as “virtual” support groups for people who are either too ill or too nervous to attend a live, local meeting.
Like all resources, message boards should be carefully evaluated. First, it is easy to get bad information, even on a moderated message board, because the exchange of information is hard to control. Second, participating in a message board is like speaking in public; you expose your thoughts and feelings to others whose reactions can be either helpful or hurtful. It is important to find boards that promote both a nurturing environment and a frank exchange of correct information.
The following message boards are recognized for the excellence of the information they provide and the quality of participation levels. Some of these sites discuss hundreds of medical topics; others focus on just a few. Many are monitored by healthcare experts who can help you manage information overload by offering their professional opinion.
MedicineNet.com — This comprehensive health information website also hosts hundreds of specialized message boards. For instance, if you need to talk about arthritis in general or ankylosing spondylitis in particular, MedicineNet.com has message boards that cover both.
Healthboards.com — Another large system of message boards, Healthboards.com is community-oriented. Lots of anecdotal exchanges give all their boards a welcoming environment. The boards are moderated, but the moderators are not healthcare professionals and will not offer advice.
WebMD.com — WebMD’s extensive system of message boards are split between unmoderated support groups and condition-specific boards monitored by assigned medical specialists who lend their expert opinions to the topic at hand.
HealingWell.com — This is a smaller message board system covering about 20 different medical topics. HealingWell.com’s message boards tend more toward exchanges of personal stories and support, which is a nice balance to the extensive amount of pure medical information hosted in other parts of the site.
Medhelp.org — Med Help International’s message boards are less extensive than some but they cover most common ailments. Similar to WebMD, their boards are divided between unmoderated support groups for various conditions and boards monitored by healthcare professionals.
Alternative-medicine-message-boards.info — One of the best message boards dedicated to alternative medicine. Unlike most message boards, which let guests read their material without creating an account, this one requires a quick, free log-in before reading any posts. Perhaps because of this, the board’s overall traffic appears relatively light. Still, the scope and coverage of this board make it valuable in researching alternatives.
In addition to this brief list, it is important to note there are places hosting message boards dedicated to specific conditions. Many major disease organizations also host some type of online forum (e.g., the American Cancer Society’s website, www.cancer.org, the American Diabetes Association’s website, www.diabetes.org). Go to your search engine, type in the health condition you’re researching, and see what it offers.
With some patience and a scrutinous eye, the health resources you need are there for the finding.