Online health after the dot-com meltdown: What's next?

Whole Earth, Winter, 2001 by Joe Flower

What if people could take charge of their own health, find out what they need to know, and help each other along the way? What if people could treat doctors as partners, collaborators, and expert consultants, rather than as the keepers of the keys? It's a powerful vision that has "Whole Earth" written all over it: Give people the tools, and they will do wonderful things. It animated many of us long before the perfect tool showed up: the Internet, with its amazing ability to distribute information and connect people.

In the early 1990s the economy was popping with new media. Large media companies thought they knew what people wanted from these new media: movies, games, shopping, sports. When they conducted surveys and asked what people wanted, they literally did not believe the answer: health information.

The survey-takers were asking, "What's missing? What can't you get from the old media ?" Even ten years ago, sports were all over the tube. You could pick up videos and music at the store, there were fifteen different ways to shop, a plethora of gaming platforms and venues. But health information--real, reliable, searchable, in words you can understand, customized for you or someone you love, from people you can question and trust--is scarce, expensive, and sometimes just plain impossible to find. And when you need it, you really, really need it. It's not a luxury.

As the Internet boomed, Internet health information boomed with it, and in much the same shape: wild, chaotic, and bifurcated. On one side, people gathered in rapidly growing, voluntary peer-to-peer self-help communities. On the other side, commercial dot-coms popped up like fungi after a spring rain, and institutions from Harvard and the Mayo Clinic to Ma and Pa Beazel's Corner Hospital sprouted websites.

The popularity of health information has remained high, but times have turned hard. The dot-com flu hit health sites early and hard, and the few left standing are tottering, but the voluntary networks are still growing like weed gardens. Where are we headed? I talked recently to two of the bifurcators themselves: a dot-com executive vice president and an online self-help guru. One uses dot-com phrases like "burn rate" and "splash page," the other doesn't--yet both are idealists at heart. --JF

As the Internet has expanded, one number has held steady--about 70 percent of the people who use the Internet use it to find health information. Yet there has been an enormous gap between professionals and experienced lay people about the seriousness and value of online health resources. If you ask Internet users whether they could find what they needed online, and whether it was satisfactory, over 90 percent say yes. If you ask physicians whether patients can find good information online, most of them say no.

But the doctors are starting to catch up. As recently as two years ago I used to get a lot of calls from journalists saying, "Dr. Ferguson, can you find us one other doctor who agrees with you" about the power of using the Internet for health information and support groups, and of doctors using email. Now journalists ask, "Can you find us anyone who is against it?"

In 1993, when I first went to the annual meeting of the American Medical Informatics Association to talk about patients having a role in online medical communications, I was literally told to sit down and shut up. They felt it was inappropriate even to discuss it. This year I've been asked to keynote the conference.

Three kinds of people use the Internet for health information. You could call them "the worried well," "the newly diagnosed," and "the chronic stables." The worried well use it occasionally and sporadically--they look up a symptom or a common garden-variety illness. They use it as an extended, searchable reference work, and they are looking mostly for traditional linear information written by doctors. About 60 percent of the people who use online health information are worried well, but they only account for 5 to 10 percent of the use.

The newly diagnosed are the heaviest users. They are only 3 to 5 percent of the users, but they account for 35 percent of the use. Chronic stables, people with some ongoing condition, account for the rest of the use. They regularly take part in discussions on mailing lists, or web-based online support groups.

Doctors tend to think that all patients use the Internet as a reference book, like the first group. But it's the second two groups who know the real depth and value of the Internet. They don't use the Internet just to look up linear information, but to communicate with physicians and with other people with the same condition, in patient-centered networks. They get a lot of support, and sometimes even care, through the network. These networks often allow people to be way ahead of their own doctors in the information they have about their particular condition.

Take the story of Karen Parles. In 1998 Karen, a 38-year-old librarian at a major New York art museum, learned that she had lung cancer. "My doctors told me it was incurable, that I had only a few months to live," she recalls. "I'm a lifelong nonsmoker, so the whole thing came as quite a shock. I was pretty overwhelmed at first. But as soon as I could, I went on to the Internet, looking for information. And I asked all my friends to help.