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January 19, 2001
Volume 38, No. 9


Caring from a distance
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Blood: the gift that some keep on giving

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Caring from a distance

University Hospital School connects health care providers to children with disabilities via telemedicine

Reenacting a telemedicine session, technician Paul McCarthy handles the machinery for a panel consisting of (from left) James Porter, social work specialist, Debora Downey, speech pathologist, Dianne McBrien, assistant professor (clinical) in medical services, and Dennis Harper, professor of pediatrics. Photo by Rex Bavousett.

"Life is out there, not in here."

By "in here," Dennis Harper means the University Hospital School. By "out there," he means the rest of the world.

Harper is a professor of pediatrics and one of the key facilitators of University Hospital School’s telemedicine initiatives. Traditionally, a child with one or more disabilities would have to make many trips to a major hospital. Now, thanks to the telemedicine program Harper helped build, kids with disabilities in Iowa can receive a complex course of treatment without all the travel. They lead their lives "out there," in their homes, schools, and communities, rather than being tethered to a team of specialists "in here."

The University of Iowa provides telemedicine services to a variety of populations in Iowa, such as prisoners and diabetics requiring ongoing management. But the University is uniquely positioned to deliver telemedicine to children with disabilities for two reasons. The first is University Hospital School and the second is the Iowa Communications Network (ICN).

The name University Hospital School is actually a misnomer. Originally, it was, indeed, a residential boarding school for children with multiple physical disabilities including cerebral palsy and post-polio.

Since the 1960s, the trend has been toward full inclusion of these children in school. Buildings were designed to be accessible. Programs integrated children with disabilities into classes. University Hospital School’s mission changed. Children no longer needed to live there. It became a family-oriented rehabilitation center for Iowans of all ages with disabilities.

"We are the main tertiary center in the state providing services to people who need specialized health care," Harper said.

In a way, telemedicine is the natural next step in that process. If the lives of children with disabilities now could center around their home towns, it would be ideal that they no longer have to travel hundreds of miles to see their doctors.

Porter, Downey, and McBrien examine the motions of a child who has difficulty swallowing. Photo by Rex Bavousett.

That’s where the ICN enters in. The ICN is a state-run fiber optic network that connects approximately 750 locations throughout the state of Iowa, including University Hospital School. Using large-screen television sets, specialists here can consult with doctors, patients, parents, and teachers throughout the state in real time, with full visual contact.

The ICN is perhaps best known as a way to deliver distance education classes. But would it work as a way to deliver treatment to children with behavioral problems or multiple disabilities?

"I was a big skeptic," Harper said. But he and his colleagues set up a research trial. They sought out children with disabilities in one area of Iowa, then tested the effectiveness of the ICN as a tool for evaluating and treating the kids.

"We picked the area education system in Ottumwa as our basic research study. It’s an area with the potential of almost 1,000 children with disabilities. This project was folded into providing them services."

The study showed two major benefits of telemedicine. It saved a lot of time for everyone involved. And it put parents in charge of their children’s treatment.

The time factor is a major concern. Because of the telemedicine program, families no longer had to miss work or pay hotel bills. Consultations between local professionals and UI staff could be done in real time rather than through time-consuming exchanges of paper or phone messages. Taking these factors into account, each telemedicine session saved an average of $971 over the cost of a traditional session.

Telemedicine also brought the parents into the process.

"They were there," Harper said. "They were with the team of professionals. The parents become part of the team." The trial was so successful that the program now is going statewide in response to the demand from rural communities.

University Hospital School has gotten national attention for its telemedicine efforts. Recently, the program was honored at the Health Information

Infrastructure conference sponsored by the National Library of Medicine, which provided major funding for Iowa’s telemedicine program. The conference was held in Bethesda, Md., but Iowa staff participated by a long-distance hookup similar to the ICN. Iowa’s program was chosen to kick off the conference, which was attended by Sen. Tom Harkin.

The event featured a remote appearance by the Ottumwa family of Samuel Walker. Samuel, 10, has been diagnosed with severe behavioral problems and has had 12 consultations with UI specialists via the ICN. His father, Kent Walker, spoke of the benefits of telemedicine.

"The main advantage to Samuel has been that we can coordinate all of his care with his teachers, his physician, and his psychiatrist all at one time. He had many aggressive problems, and now he is improving."

Harper’s skepticism about telemedicine long ago gave way to wholehearted enthusiasm.

"This is a boon," Harper said. "I can screen for dementia in older folks. I can counsel the vast majority of the elderly with disabilities. We’re talking about people with cognitive disabilities. Home care and stroke follow-up. You don’t need to drag them in here. When you do, often they shut down; they don’t cooperate.

"If there’s a main message here, it’s that we’re now able to provide high-quality health care consultation to local communities, and we save people a lot of time and money. This program has literally been viewed as the jewel in the crown of the National Library of Medicine’s telemedicine program."

Article by Sam Samuels


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