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Online Health After the Dot-Com Meltdown

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.

Tom Ferguson: "The doctors are starting to catch up."

Yale M.D.Tom Ferguson (say "" five times without slipping) is author of a dozen self-help books on health, founder of Medical Self-Care magazine, and once upon a time was the medical editor of The Whole Earth Catalog .

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.

"I found a great support group for lung cancer, the Lung-Onc mailing list (listserv.acor.orgarchives/lung-onc.html). The other patients on the list answered my questions, suggested useful sites, and gave me a lot of invaluable support. But even so, I had a hard time finding the information I needed. There was great stuff out there, but it was scattered across dozens of different sites. There was no comprehensive site that provided links to all the best online information for this disease."

Through a friend of a friend, Karen heard that a surgical team at Boston's Massachusetts General Hospital was developing a new treatment for her type of cancer. "I went to Boston to see them and I was pretty impressed," she says. "But having a lung removed by an unproven procedure still seemed pretty frightening, so I shared my fears with my Lung-Onc friends. I heard right back from eight or ten others who'd had a pneumonectomy. They assured me that I could do it and encouraged me to give it a shot. I was the twelfth patient to undergo the new treatment. That was nearly a year and a half ago, and so far, knock on wood, I'm doing fine."

Like many other patients who have used online support groups, Karen found the information there invaluable. "The group was a great source of advice for dealing with day-to-day problems during my recovery. Patients who've had chest surgery often have trouble sleeping because every position makes your ribs hurt. The folks on the list can tell you exactly what to do.

"After I recovered from the surgery, I got to thinking: I'm probably alive today because I'm wired and well-connected. That didn't seem fair. So I started, to share the resources I'd found with other lung cancer patients."

Karen's site offers access to in-depth information about lung cancer listings of physicians who specialize in the various types of lung cancer, medical centers and clinical trials, links to bibliographic databases, medical libraries, conference proceedings, journals, and other medical references. It also offers links for alternative medicine, online support groups, and survivors' stories. It offers access to Karen as well. "My Lung-Onc friends help keep me up to date on the latest research and all the new treatments," she says. "And if visitors to my site are having trouble finding what they need, I'll help them find it or I'll go find it for them. And whenever I learn something new, I put it up on the site."

AL-CASE, the Alliance for Lung Cancer Advocacy, Support, and Education (the only national US support organization for lung cancer) now refers its members to Karen's site. is widely acknowledged as the definitive consumer site for lung cancer.

Why does Karen devote twenty or more unpaid hours a week to maintaining her site and helping other patients? "I suppose it's because it's so badly needed and no one else is doing it," she says. "But it's incredibly rewarding. I get these effusively grateful emails from people I've helped.

"This happens at the museum library too, of course. I'll find someone a fabulous seventeenth-century book on German woodcuts, and they'll be grateful. But when people say, 'If it wasn't for you, I'd be dead,' well, that's gratitude on a whole different level."

JF: What about commercial sites?

TF: As recently as two years ago, I was getting wild calls from dot-coms willing to throw money around. Now that commercial frenzy has all gone away, and we are seeing a shift toward online communities.

Even at their peak, though they were getting a lot of media, the dot-com side of this was very small. What people actually do online is search for their particular illness, and that side is almost all nonprofit. They want "" They want to talk to other patients, and they want annotated links from a lay-run hub site. Those professional interfaces are quite impenetrable to them. The information might be at the National Cancer Institute, but it's buried five layers deep. The annotated link will tell them just where to go.

A lot of people in these online self-help communities will have almost nothing to do with a commercial site.

JF: Is anything being done to guarantee the quality of online health information?

TF: The big players have established a "Good Housekeeping seal" group. The name is in transition, but everyone calls it "URAC," after its original name. It costs $5,000 just to apply to be a member, so it's automatically only going to be for big players. In reality, most people judge the quality of information online the same way they do when buying a book. They use their common sense, they might have some sense of the author's reputation or might ask other people interested in the subject. There is no single standard. The mother of an autistic child might not want to hear the opinions of a physician, for instance. She might want to hear the experiences of the mother of some other autistic kid.

JF: Is online health information changing the relationship of doctors and patients?

TF: These days the patients are teaching the doctors. As more and more of them show up in the office clearly knowing more up-to-date things than the doctors do about their condition, doctors are beginning to see that the rules of the game are changing.

People have two distinctly different types of relationships with physicians online. In Type 1, people find a doctor online, perhaps through a self-help site, or through the doctor's own website. In this relationship you get the same kind of curbside consult you might get if you met a doctor at a cocktail party. It's a lot like talking to an expert medical librarian or even an experienced self-helper. He or she won't step into the take-charge authority role that you might be looking for, and certainly won't diagnose or prescribe online.

In Type 2 your regular doctor says, "Let's use email." This conversation is almost completely identical with communications by telephone?"Do I need to come in, how do I prepare?" or after the visit, "What was it you said about this medicine, is this a side effect?" and so on.

We are doing a series of promising quick and dirty studies for the Pew Charitable Trust, where I am a senior research fellow. We are interviewing a series of patients and their doctors to try to get at that gap in the way they see use of the Internet. We are also working at a major cancer center with a set of newly diagnosed people to see how we could remove some of the barriers and difficulties in using the Internet in those first three to six months, as they try to come to terms with their condition.

Some online communities operate at a very high level, some flail around. In another study, we will pick a flailer, then pay an experienced online self-helper to go in and facilitate that group, and see if it makes a difference. We keep exploring, asking what's the leverage, asking where are the charismatic prototypes that can link that enormous lay volunteer community with the professional world.

JF: What do you recommend for someone starting out to use the Net for health information?

TF: Don't search alone. Get the most net-savvy person you know to help you. I like the search engine Google, with its weighting system. Search for your topic, being as specific as you can. Then search for "your topic" + "support group" and "your topic" + "self help." Finally, as you learn about the best resources, realize that you can be of help to others. Make some notes about what works, and look for opportunities to help others.

JF: What sites do you like?

TF: The idea that there is a single best site for a given condition is usually illusory. It's more complex than that. But a few exemplary sites can give you a feeling for what is online.

Deryk Van Brunt: "The big win is e-commerce?selling actual products online."

Deryk Van Brunt, executive vice president for business development and chief privacy officer of, holds a masters degree from the School of Public Health at UC Berkeley, and is a longtime stalwart of the "Healthy Cities" movement. The site includes health news, information on more than ninety conditions and topics, a health encyclopedia, links to more resources and self-diagnosis tools. About a third of the home page is links to products for sale. started as a "content" site?free health information, supported by ads and sponsorships. But we got the joke early?whatever you are really here for, you've got to have a business model that works. So we began pushing the institutional side, building websites for institutions and licensing content to them. That's a good business, but it's small. It doesn't scale.

About a year and a half ago, we understood that the big win is e-commerce?selling actual products online. So we bought,, and the assets of (which sold large items like adjustable beds and wheelchairs), as well as a number of smaller operations.

We will bring in some $50 million in revenue this year. Our is the second largest online pharmacy, and we have higher gross margins than any of the leading online pharmacies. Though our sales are lower than the industry leader,, our gross profits are the same or even higher.

We're still not profitable today, but we've gotten our burn rate below $1 million per month, and it continues to drop. We have cut back from 350 employees to 150. We have cash in the bank. We currently forecast turning a profit by the end of this year.

Though 90 percent of our revenue comes from e-commerce, Gomez, when it rated healthcare sites, rated us as the Number 1 e-Health website. The content draws people in. Dean Edell, one of the founders of the company, talks to 20 million people a week over the radio, and he sends people toHealthCentral. When they get there, they find that e-commerce is a third of the splash page.

We believe this is exactly the right model at exactly the right time?assuming we can reach the inflection point of profitability.

JF: What was the result of the dot-com downturn?

DVB: A pure-play web health information business essentially doesn't exist. You have to have several businesses. Sites like OnHealth and have gotten banged hard. There is still a ton of health traffic online; it's just not all going to one site.

JF: Besides making a profit, what are your goals?

DVB: The real goal of giving out health information is not just information, it's decision support: how do we help you make the best decisions? Neither we nor anyone else has accomplished that. But information, products, and services are all part of decision support. They are all of value to the consumer.

If you look at that literature about behavioral change, you will see that people need several things to help them behave differently:

1) Information and awareness. Take weight loss: Is it important? Why? How does it affect health? Are there news articles about it?

2) A sense of susceptibility: Does this really matter to me? How severe is my risk?

3) A sense of communication: You might want to talk to other people in your situation.

Only after all that can a person move to making a decision to change their behavior. Our attempt is to keep it moving toward decision support.

JF: Can people trust information from a site whose business is selling health products?

DVB: The trust issue is very big. Our question, of course, had to be, Would people trust the same source for both content and commerce? In answer, we have built a Chinese wall between the two. We will speak frankly on the content side. Content creates the advertising space. We would never pollute it with merchandising. For instance, Dr. Edell slams some vitamins. But over on the other side, we're selling them by the crate. The commerce division says, "We have no opinion. We just want to know what you want, so that we can sell it to you."

We have no trickery, no sudden pop-ups. We don't track where you go on the content side and then send you email about products related to your condition. On the commerce side, on the other hand, we'll ask you whether we can send you email about special offers.

JF: Tom Ferguson says that lots of people who use self-help sites will have nothing to do with commercial sites.

DVB: There may be some truth to that. Culturally, some of the people on those sites may see all commercial sites as part of "The Establishment." But I believe that other self-helpers see us as having lots of high-quality information, and see that we are working to gain the trust of users.

The self-help groups don't even go to the trouble that the large commercial groups do to attribute their content to the proper sources. We hold to a very stringent bar, and we are earning the trust of users.

JF: What about privacy?

DVB: The key to privacy is disclosure, letting people know what kind of information you capture, and with whom you share it, so that they can make informed choices. For instance, we don't share your information with anyone, unless it is necessary to do the fulfillment. But we have a contract with our suppliers that forbids them to share or make use of this information. They become part of our "chain of trust."

Over the next year privacy policies in the industry will be much more clearly written, and will have more teeth, because of HIPPA (the Health Industry Privacy and Portability Act), rulings by the FTC (Federal Trade Commission), and the new American Accreditation Health Care Commission (URAC).

The real privacy problem is not hackers stealing your information. The real problem is, what is your employer, your insurance company, or the government going to do with your health information? Do you end up fired, or denied coverage, because of the information you were looking for? Do you end up on endless mailing lists?

We feel that we are the trusted third party?a place where people can find out information and not feel that their search will get misused by someone.