Scheerhorn and his research work to support hemophiliacs

How can "community" be defined? Does a community have to be a place, or can it exist in cyberspace? Can we have a community that is based around common interests, rather than proximity?

Based on his experience, Dirk Scheerhorn would argue that communities do not have to be created face-to-face. Rather, they can be individuals with common interests who are linked together only through computers and modems, and they can develop into a community through the use of technology.

Scheerhorn tried out his ideas through his work with the National Hemophilia Foundation. A hemophiliac himself, Scheerhorn knew of the need within the community for not only a clearinghouse for information but also to create a place where hemophiliacs could learn from and support each other. Hemophilia is a "silent" disease in that there are no visible symptoms and the disease is rare enough that hemophiliacs often lead lives isolated from people who will understand their condition. Hemophilia can also be nerve-wracking for caregivers of children, because children are most likely to sustain the kinds of bleeding injuries that can be dangerous for hemophiliacs.

To create this technological community, Scheerhorn created HIGHnet, a computer bulletin board that included both information and discussion groups. At the beginning, HIGHnet was a budget operation: The Ohio State University, where Scheerhorn was a faculty member, donated surplus computers for hemophiliacs to use, and AT&T donated a toll-free telephone line. Ohio State's Center for the Advanced Study of Telecommunication provided design and technical support. Hemophiliacs could call the toll-free number from their computers and access both information and discussion groups. The discussion groups were segmented, in that they were restricted to certain groups of users, such as adult males, spouses, and children, siblings and other family members.

The discussion groups in particular quickly became a hit. Scheerhorn's research indicated that a high percentage of potential users called the bulletin board regularly. Not surprisingly, familiarity with computers seemed to increase the amount that the service was used.

The original HIGHnet was almost too successful; resources were tapped because callers were using the 800 number and staying on-line for long periods of time chatting or looking at the resources. So, when the initial funding expired, Scheerhorn and his colleagues looked for other ways of making the system available. HIGHnet II, as a result, can now be accessed via the Internet (at http://www.highnet2.org), or via the major on-line services. The continuation of the project has recently been funded by the Quantum Health Resources Corporation, a long-term care medical practice.

Scheerhorn has moved on, to the Philadelphia College of Pharmacy and Science, where he is working with pharmacists in training to improve their abilities in communicating with the public, but he continues to work on hemophilia issues as well. He's serving as Vice Chair of the Education and Information Committee of the National Hemophilia Foundation, and he's been helping them design their web page (at www.hemophilia.org) to increase interactivity, based on his experience with the bulletin board service. Even he's amazed at the explosion of information in this area: "Two years ago," he said, "our bulletin board was all there was. Now there are several e-mail lists, a Usenet discussion group, and a number of web pages."

Still, Scheerhorn admits that he gets quite a bit of pleasure out of doing this project. "As both a long-term patient and as someone who's studied communication, I have a perspective that not many people have," he said. And, whether they know it or not, the fact that he's there turns out to be very important to a great number of hemophiliacs and their caregivers.