Look for "medical information" on the Web and one search engine will give you almost 7 million Web sites that deal with the subject. One of the earliest of those sites online is Med Help International (http://medhelp.org) currently visited by about 5 million consumers each month who use its services at no cost. Med Help is supported through corporate and institutional donations, and is always in search of new sponsorship. Cindy Thompson and Phil Garfinkel developed the site after meeting in an online discussion in 1993. At that time, they each had undergone a long ordeal, coping with traumatic illnesses in their families. They also shared common frustration and dismay about their inability to find accurate medical information in the midst of their family health crises. Thompson and Garfinkel talked with Charlene Porter about how Med Help International began, how it has grown, and the services the site provides to consumers.

Question: How did the two of you come up with the idea for providing an information source for medical consumers?
Thompson: I vowed that if I was ever in a position to do something to help others avoid this kind of situation, I would. Then I ran into Phil. It was actually on Compuserve (an online dial-up service), before the Internet was big. I said to Phil, "I would love to create a safe place where people could go to get the highest quality support when they need it most." He said, "I can build that, if you can find the doctors." My background had been in the pharmaceutical and biotechnology industries working as a headhunter (executive search and placement consultant) specifically with physicians. So it worked out really well.

Q: What was the state of development for the World Wide Web at that time?
Garfinkel: It didn't exist at that time.
Thompson: There was no WWW.

Q: What form did the earliest version of Med Help International take then?
Garfinkel: In April of 1994, we started with a 386 computer, two modems, and two phone lines. We put together what was known at that time as a bulletin board system or BBS. People could dial in. We had some articles online from various sources, and we asked other people to donate articles. They would dial in on phone lines through modems from the U.S. and Canada. Actually, it got as far as Europe. It got quite popular.
Thompson: I remember the London Daily Telegraph did an article on us very early on, as did Forbes magazine very early in our development.
Garfinkel: Then by 1995, the Internet itself supported just a few functions. It supported e-mail, which was limited to certain programs. It was very difficult to navigate e-mail in those days. It supported a protocol called FTP (File Transfer Protocol) through which files could be transferred, and (the) Telnet (program), which allows a user to log on to a remote computer. So we connected to an Internet Service Provider (ISP). There were very few of them in those days. And we had a live dial-up connection to our ISP, and we were on the Internet. So rather than having to make a long distance call to this BBS, people were able to come in through the Internet, log on, and browse our libraries. That was the first step. Then shortly after, Web technology started evolving a little bit. We changed this BBS so that it would also provide Web service. It was about 1995. At that point, in terms of health information, there was us and the University of Iowa was out there (on the Web). The National Cancer Institute had an FTP presence, but not a Web presence at that point. I don't really remember too many others.
Thompson: Certainly Columbia University School of Medicine was out there. And we were the only three that I'm aware of who were offering consumer health information. We were strictly consumer-oriented, as opposed to researcher-oriented. We didn't care about offering professional information to doctors. We felt that there were many sites that could do it better than we could, but we could certainly speak to the consumer. Q: Describe the various types of content that a person can access on your site when they've gotten a diagnosis of some difficult or rare medical condition.
Garfinkel: Let's say they're diagnosed with some kind of neurological disorder, for example. Initially they can search the site and read articles, descriptions, basic material about the disease in laymen's terminology. They can peruse questions and answers posted to doctors at the Cleveland Clinic Neurology Center regarding their specific conditions and side effects.

Q: So one individual can learn from the experience of another who's suffering from the same condition?
Thompson: Absolutely true. That also falls into our patient-to-patient network whereby people register with their first name, by a particular disease or disorder, and they can share experiences via e-mail. We also offer a clinical trials database that is donated to us by Centerwatch (a clinical trials listing service online at http://www.centerwatch.com). So, let's say someone is diagnosed with a rare disorder or a horrendous disease, they can look through this clinical trials database and see if there are any trials that would be appropriate to them. We also have a daily news feed that comes to us from Intelihealth
( http://www.intelihealth.com), which is now teamed with Harvard University Medical School. Basically, what we've done is barter or trade information for viewers. I mean we will offer people visibility on our Web site if they share with us quality information. So we've done a lot of what we've done via the barter system. We give, they give, and everybody benefits.
Garfinkel: Consumers will post a question on the site that a doctor will respond to in a public forum, or in a message board. We've been at the forefront in this particular area over the years. That allows the consumer to get an answer to their personal question in a specific case, in somewhat general terms because obviously doctors can't diagnose. Once the doctors have posted an answer, it gets archived. Subsequent people coming on the site can look up what was posted, and the answers. So we've cut out most of the chase (for information). So when the consumer does a search on chicken pox, for example, they might find answers that a doctor has given to a specific patient that might be appropriate to them also. I guess the other thing to note is that we have a very large collection of information now online. At one point, we had the largest collection of consumer information online anywhere with the exception of the National Library of Medicine.

Q: What has been the progression in the last five years on the number of visitors to your Web site?
Garfinkel: Initially, in August of 1995, I think we had about 38,000 visitors a month. In October 2000, we had about 5 million.
Thompson: And it has grown consistently every year.

Q: Are people visiting Med Help International because they're in remote areas or foreign countries lacking access to a large body of medical information? Who and where are your clientele?
Garfinkel: I think we have more than 120 countries represented. Eighty-five percent of our visitors are from the United States.
Thompson: After that, our largest number of visitors comes from Canada. Next highest is the United Kingdom, and next highest is Australia.

Q: What have you learned about the value of your site to visitors logging in from the developing world?
Thompson: We get e-mail from countries like Bangladesh and Pakistan. Visitors from parts of China have come to us saying, "We rely on your site because we don't have health care in our town or our village." We had a beautiful e-mail from a missionary who said about once a week he got into a town where he could access the Internet and he would visit our site to look for information to help patients with various diseases. He used our site all the time. People in Alaska come to us quite a bit, looking for help. They're out in the bush with little medical care available. They have satellite connections to the Internet. They can come to Med Help International and ask their questions and get answers.
Garfinkel: One other point to note is that we've been building these communities of visitors who have similar conditions such as heart problems or neurological problems. They tend to attract people with chronic diseases, so that these people are logging on daily, chatting with each other, sharing information. So from these communities, we have an awful lot of repeat business, if you will.

Q: The site is very explicit in explaining to visitors that the forums are not intended to offer diagnoses, and visitors really must see their physicians for specific information. Do you have fears that visitors may not take these warnings seriously enough, that they'll use sites like yours to make self-diagnoses?
Thompson: I hope there has been enough news coverage worldwide about that very issue, cautioning everyone about anything on the Internet, not just medical information, but any kind of information. So we hope that people are aware that it's for educational purposes or support purposes. It is certainly not a place you can get a diagnosis, and anyone who claims to offer a diagnosis is not dealing with the public squarely.

Q: There are few things more personal than describing a medical condition or disease. How do you strive to protect the privacy of your site visitors?
Thompson: That's one of the reasons we don't offer e-mail replies to questions posed to doctors, because of the security issues. E-mail can be altered, and can be grabbed via the Internet. Phil has developed customized software on our site that guarantees that the doctor answering the question in one of our forums is indeed a doctor from one of the organizations working with us. We don't ask people to give us any personal information other than a first name, and an e-mail address, which we don't share with anyone.
Garfinkel: They surf anonymously, and they post anonymously.

Q: The advice visitors get from doctors is an important service, but do your visitors find that the networking capability is just as important, finding other people perhaps with the same condition who have compassion and understanding of their problems?
Thompson: Equally important, yes. The support that people show each other can be incredible. Just finding out that you're not alone in the world, you're not the only one with a chronic disease or disorder. I know myself I have seen things on our Web site about a condition I have where I say, "Gee, I've had that same reaction. Isn't that interesting, I'm not the only one." So it's very nice to have that information and support.

Q: On the patient support sub-page at the Med Help site, you have this quotation posted: "The deepest need of man is to overcome his separateness and to leave the prison of his aloneness." Those are the words of prominent psychologist Erich Fromm. How does that quote reflect the goals of Med Help's patient support page?
Thompson: Based on the "thank you" letters we receive every day, and based on the threads running through the forums, I think we've been very helpful in not only helping people connect with the highest quality medical information, but also to connect with others who share the same disease or disorder, and offer support via those means.
Garfinkel: Every time we go through frustration and heartache and heartburn, then all of a sudden one of these letters will come in and we say, "Wow!"
Thompson: It reminds us why we're doing this again.
Garfinkel: On an altruistic level, we've achieved many, many goals that we set out to do in 1994.
Thompson: Exceeded! When we started our BBS, you can't imagine how excited we were when there were two people online at the same time. We sat there and watched the lights (on the systems console) and said, "Oooh! There are two people on our site at the same time." Now 100,000 could be on the site at the same time. It's just incredible. Not only our site, but the Internet has changed the world.
Garfinkel: There were about 1 million sites on the Web in the mid-90s, and now there's about 1 billion (1,000 million). That's what the growth has been.
Thompson: I have felt for years that the Internet can create, probably will create, the best means for Third World countries and rural areas to access information, not just medical information, but all sorts of information, that can spur growth in those areas.
Garfinkel: Our mission is being achieved and I think the general level of patient and public education has been raised enormously, not just through our efforts, but through the efforts of many other organizations also. The Internet is basically a leveling mechanism whereby each individual now can get access to some of the best minds in the country.

Charlene Porter writes on communications issues for the Office of International Information Programs, U.S. Department of State.