Want to find out the possible side effects of the new drug your doctor prescribed? Looking for more information about the journal study the health reporter discussed on last night's evening news? Interested in learning more about arthritis? Wondering where your neighbor can find a support group for the rare disease he was just diagnosed with?
If you have a computer, a modem and access to the internet, the answers are right at your fingertips.
In just a few short years, cyberspace has revolutionized the way consumers find information, help and support. Eventually, predicts Tom Ferguson, M.D., it will revolutionize the health-care system Itself.
A Health-Care Revolution
"We've created a healthcare system in which skills and information are available only to health-care professionals," says Ferguson, author of Health Online (Reading, Mass.: Addison-Wesley, 1996). We're now entering an era in which the information is available to anyone with a computer. The role of the health-care professional as the one who knows it all and does it all in health care will have to change. Computers will allow consumers to manage a great portion of their health affairs, to seek the information they need to make decisions and manage problems with occassional interaction and partnering with clinicians."
Some practitioners already see this change coming. In the past year or so, medical professional publications have been peppered with articles about consumers turning to cyberspace for medical information and support. Some of these articles have a positive spin, quoting doctors who say that patients who seek information on-line are better informed; others have a negative spin, quoting doctors who say their patients are searching for information on-line in an effort to second-guess them. And many point to the fact that while much of the information available on-line is valuable, there is misinformation out there as well. Despite these criticisms, however, all the articles indicate that "cyber, health care is here to stay.
A Valuable Resource
So what actually is out there? And how can consumers tap into this valuable resource? We asked Ferguson and Jeanne C. Ryer, author of Wiley and Sons' soon-to be published Health Net: Your Essential Resource for the Most Up-to-Date Medical Information Online, to give us an overview.
According to Ryer, there are several major sources of consumer information, including consumer-oriented fact sheets on major diseases; databases of medical information, including databases on genetic information, drug references, cancer, rare diseases and the major medical literature; and the contents of the major medical journals themselves -- in both abstract and full-text form.
"But it's more than a giant encyclopedia on steroids," Ferguson says, adding that cyberspace also offers interaction and support. There are hundreds of on-line communities where you can go to not only obtain information, but also to ask questions, exchange advice and experience and even find support. These on-line support and self-help groups have much to offer consumers, especially those suffering from chronic conditions, he says.
"There's a real common bond from the get-go," Ferguson says. "The level may be even more intimate than in real life. In fact, some people say they can talk about things on-line that they can't tell their spouses. Everyone is dealing with the same problem. And you can be anonymous. You don't have to dress up. In fact you don't have to speak at all. You can just read the posting or listen to the chat sessions.
"These communities include a fairly hefty proportion of health professionals as well as self-helpers," Ferguson says. And the selfhelpers themselves are amazingly knowledgeable. "If you're newly diagnosed with a brain tumor and you go into a mailing list, you might get better information than you might get in a doctor's office. If you want to know what is the overall life effect of Prozac, you won't find it in a textbook, but you will find it in a support group of people taking Prozac."
Avoiding the Pitfalls
Both Ferguson and Ryer agree that misinformation can be disseminated on-line, but, they say, a savvy consumer can learn to pick out the wheat from the chaff.
"You can't check your brain at the door when you go into this world," Ferguson says. "Although the discussion groups have a high level of self-monitoring, you have to be selective in deciding what you're going to look for and in what place."
"Do what you always do when looking for health information," Ryer says. "Use your own common sense. If it sounds too good to be true, it probably is. There are no controls on what is put on-line. I suggest that people look at where the information is coming from and consider the source." Ryer also suggests that people take the information they come by on-line back to their doctors. While some doctors might not have the time or might not be welcoming, she says, they might actually learn something.
"It's becoming more and more common for people to come into a clinic and know about studies their doctors have never heard of," Ferguson says. But, Ryer adds, they need to get used to it.
"Physicians need to admit to themselves that they don't have time to read everything." She says that if you don't get a good response when you present your doctor with information, "You either need to retrain him or look elsewhere."
Where to Find information
But you won't generate any reaction from your doctor until you learn how to find the information you want to share with him. Once you've got your computer and modem hooked up and figured out how to access cyberspace, you need to know where to go to find health and medical information. According to Ferguson, there are four major sources: commercial services, on-line mailing lists, internet newsgroups (also known as USENET newsgroups) and the World Wide Web.
The commercial services, such as America On-line, Prodigy, CompuServe and Microsoft Network, offer databases, information, and support forums and discussion groups as well as access to the Internet, including the World Wide Web. Both Ferguson and Ryer say these services offer the easiest way to go on-line and are a great place to start.
Once in the Internet, consumers can sign up for line mailing lists, through which they will receive all the messages sent to people on that list. Mailing lists are a common way for likeminded individuals to connect and communicate about a given subject, Ferguson says.
For more interactive communication, there are Internet, or USENET, newsgroups. These are electronic places where people with similar interests can communicate. Ferguson says there are currently thousands of these discussion groups on the Internet, and many are devoted to medical and health topics.
Finally, there is the World Wide Web. This rapidly growing vehicle is chock-full of information that can be accessed via a search engine such as Yahoo or Altavista. The Web currently offers little in terms of discussion and support groups, but Ferguson says that may change in the future as technology is developed to allow for discussion groups.
It may take some time to completely master the technology of "Netsurfing" to find the exact information you need or the support group that feels right for you, but both Ferguson and Ryer say it can be done.
"You don't have to be a computer geek," Ferguson says, adding that he recently introduced his mother, who is in her 80s, to the Internet. Ryer suggests that consumers unfamiliar with computers and cyberspace seek the advice of computer-savvy friend or family members. These people can help you learn to get around, she says. in addition, a growing number of books, such as those written by Ferguson and Ryer, provide detailed information on how to access the sources available in cyberspace.
