By definition, "crisis" means that one's life is out of control. When faced with a health crisis, many people experience the information they receive about their condition -- and the way they receive it -- as making their feelings of being out of control worse, not better. Recently, a team at the University of Wisconsin-Madison reported encouraging results in addressing this problem with a new computer-based program, the Comprehensive Health Enhancement Support System (CHESS).
An interactive, PC-based system with color graphics and a user-friendly format, CHESS is easy to use — even for people with no computer experience. Patients diagnosed with serious conditions such as breast cancer or AIDS/HIV infection are given a computer at home. At their own convenience, patients can access timely, comprehensible information about their disease and take advantage of a variety of non-threatening and anonymous support opportunities.
They can read brief answers to hundreds of commonly asked questions, detailed articles about their health problem and descriptions of services available. They can ask questions of experts anonymously and receive confidential responses. They can read real-life, personal stories of others living and coping with similar problems and communicate directly with these people.
Using problem-solving tools to monitor their health status and risk behaviors, they can think through difficult and important decisions, plan how to overcome obstacles and implement those decisions.
With traditional health education, patients often have little control over the extent, depth or speed of information they receive. CHESS overcomes many of these barriers. Patients get assistance 24-hours a day, 7 days a week. They can proceed at their own pace, deal with issues when, how, in what order, and in as much detail as they wish. Facilitated, online support groups help reduce the sense of isolation and helplessness for patients and their families.
Preliminary results of the CHESS system -- one of the first computer-based patient education and support programs to be evaluated scientifically -- are very promising:
- Women with breast cancer who used CHESS noted that the system was very valuable and easy-to-use. They reported more positive emotions and fewer negative emotions. CHESS was used extensively by both older and younger women, as well as by both college- and high school-educated women.
- In controlled studies over a six-month period, HIV-infected men and women used the system an average of 132 times per person (more than once a day on average) for an average total of 39 hours per person. Minority subjects used CHESS as much as Caucasian subjects. Compared to controls, CHESS users reported significantly improved mental functioning, more social support, less negative emotion, more active participation in their health care, and, in general, a more active life. They spent less time during out-patient visits and reported shorter hospitalizations resulting in an estimated reduction in health care costs.
The early lessons from CHESS are clear, with the right motivation (in this case a serious health crisis), encouragement and support, people with no knowledge or even a fear of computers can learn the system quickly and begin reaping the benefits.
Computer systems can go beyond delivery of information and help people connect with others who share a similar life experience. And well-designed computer systems can measurably improve health status and reduce health care costs.
CHESS is now being converted to operate on the Internet which will reduce the cost and offer greater, continuing access.
Patient comments on CHESS:
"One thing I learned from CHESS is how much I don’t know about my diagnosis and prognosis. I can’t begin to tell you how useful CHESS has become for me. So much of fighting this disease is to find a way to get back in charge of my body. This program has been the prime factor in doing that. I feel really in control."
"I ask more intelligent questions when I see my doctor. I feel more in charge of my health care. I have met people who are in the same situation I am in. This has helped. CHESS has allowed me to give of myself in a way that otherwise would not have been possible."
"My biggest benefit was the relief I felt after using CHESS that I had made the right decision as far as surgery for me. I wish every woman had CHESS the minute she had a breast cancer diagnosis."
"This machine came alive and became real, and now suddenly these real people really know me, WOW! I've finally started going to groups and meeting lots of new people, and getting my life going again. I guess when I found out I had this disease I decided I was dying. Well, now I'm back with the living."
For More Information
Gustafson DH, et al. CHESS: A computer-based information and support system for people facing health-related crises or concerns. 17th Annual SCAMC Proceedings American Medical Infomatics Association, 1993.
Gustafson DH, et al. The use and impact of a computer-based support system for people living with AIDS and HIV infection. 18th Annual SCAMC Proceedings American Medical Infomatics Association, 1994.
CHESS (Comprehensive Health Enhancement Support System), Center for Health Systems Research and Analysis, University of Wisconsin-Madison, 610 Walnut Street, Room 1109 WARF Building, Madison, WI 53705-2397.
Excerpted with permission from the Quarterly Newsletter, Mind/Body Health Newsletter. For subscription information call 1-(800)-222-4745 or visit the Institute for the Study of Human Knowledge website.