Dr. Tom Ferguson believes that online health support networks have begun to transform the way we heal.
Tom Ferguson has been beavering away since the 1970's, trying to transform our creaky industrial-age medical system by giving the patient-you-information and power.The Yale-educated physician is the author of a dozen self-help books on health, founder of Medical Self-Care magazine, and medical editor of The Whole Earth Catalog. But not until the 1990's did he discover the perfect vehicle for his revolution:the Internet. Now he's dromhi@aol.com, senior associate at Harvard Medical School's Center for Clinical Computing, author of Health Online(Addison-Wesley,1996), and fervent advocate of cyberspace, believing it will transform the way we stay well, the way we heal, and the way we die.
Wired: Why is our health care system so sick?
Ferguson: We rely on authoritarian professional care to solve nearly all of our health problems. Not only does this cost more than we can afford, it doesn't lead to the best quality care. The patient, the family, and informal self-help communities are probably the most important resources in health care, but they get very little press.
How can the Internet fix that?
Online networks bring the patient back into the loop. A lot of people think the Internet is for games, sex chat, and email to the sales team. What's health got to do with it? Plenty. The Web already has more than 25,000 health-related sites. You can search medical literature, access journal articles and medical textbooks, and get a cookbook guide to essentials of diagnosing and treating just about any condition you want. AOL's Better Health & Medical Network alone gets more than 1 million hits a month. There are hundreds of mailing lists and Usenet newsgroups dedicated to health topics.
Are these support groups more than just victim cultures filled with mutual-pity parties?
If you see yourself as a victim, you are probably going to search out a rescuer. So you will be more likely to ask a professional to solve your problems for you. People who go online, however, are taking more responsibility, not less.
How profound can the support be if you don't even know the people?
It's much more robust than outsiders may imagine.
For people with AIDS or a certain kind of rare cancer, the friendships they form on these groups can become more important than any of their other social connections. An online support group lets you get your feelings out with no one judging you. People pay attention, and they don't interrupt. Often people will go to a depth of sharing that is quite overwhelming.
Would you trust the advice you get online?
Some lay people know more about their condition than the professionals. If I am a family practitioner, I might need to know about maybe 1,000 different conditions. If a woman comes in with fibromyalgia, and she has spent the last three months researching this condition online, it is very reasonable that she might know more about this condition than I do. Many times people in a discussion group have a great breadth and range of knowledge on the topic and can give you the best current thinking. The information in these problem- specific online groups is generally much superior to anything you can find in any printed format and in many cases superior to anything you can get from your own health professional.
Going online can be expensive and difficult if you're not already into it. How does this square with cutting health care costs?
Studies show that online information combined with support groups is effective at giving people better health and at cutting costs. In Madison, Wisconsin, and a dozen other communities around the country, if you are diagnosed with AIDS, breast cancer, or a number of other conditions, your HMO or clinic will come out and give you a PC-based home health workstation called CHESS. It has 60 to 80 Mbytes of high-quality information that is specific to your condition. It's a built-in electronic support group. A modem links you to three different functions: one to talk with your health professionals, one to connect with local community groups, and one that allows you to conference with people with similar diagnoses who live near you. These patients become much more capable and responsible and require less clinical care. They are hospitalized for a shorter time - and hospitalization can cost thousands per day. Plus their psychological well-being just goes right off the charts. Their experience of being sick is an order of magnitude better because they are in charge. They are not the passive recipients of some process they don't understand.
What about the docs?
Depends. Docs online can't take on the usual all-knowing, calling-the-shots role. Do that and you'll get flamed. The social contract behind these online groups is that the patients and families own the group and the clinicians are guests. Docs are often surprised by how much they learn. Things that patients often don't tell doctors. I talked to a headache specialist, a consultant for a headache board on CompuServe, who had no idea beforehand how much chronic headaches disrupt a patient's whole life - and how often clinicians make them feel it's their fault.
Do docs love email?
Ninety-five percent are terrified. They imagine a deluge from patients. The other 5 percent, mostly younger physicians, find that they can have more and higher quality interactions with their patients. You can
talk to 50 people via email in the time that you can talk to five people on the phone. Docs can see the handwriting on the wall. They can see that the future of medicine is going to involve more online communication and that the people who become comfortable with it will do very well.
