Gustafson group receives $10 million for cancer-communications research

David Gustafson (22K JPG)

This summer, the National Cancer Institute (NCI) funded a $10 million center of excellence in cancer communications research at UW-Madison that will strive to improve the quality of life for cancer patients and their families, particularly those from underserved populations.

Researchers from several schools and colleges, including the College of Engineering, the College of Agricultural and Life Sciences, the College of Letters and Science, the Medical School, School of Human Ecology and the School of Journalism and Mass Communication will work together to enhance an interactive cancer-communication system. Much of their work will focus on CHESS, the Comprehensive Health Enhancement Support System, a computer-based health resource designed to educate and equip people facing a health crisis.

"Interactive, computer-based communication puts control in the hands of patients and their families, making them more effective participants in managing their health in a crisis," says David Gustafson, an industrial engineering professor emeritus who led the team that developed CHESS at UW-Madison's Center for Health Systems Research and Analysis.

Led by Gustafson, this NCI Center of Excellence at UW-Madison, which will be funded for five years, will conduct three main projects. Investigators will systematically add services, such as information, social support and skills training, to CHESS and measure changes in breast-cancer patient outcomes. They will address the efficacy of patients' use of CHESS by evaluating patients who use both CHESS and a human cancer mentor versus those who rely only on Internet-based information. And they will evaluate whether CHESS improves palliative care, as well as the effect of sharing patient information with clinicians.

During the five years, investigators will enhance CHESS with new functions tailored to individual needs and with new modules, including ones on managing distress, relating as couples, help for caregivers and patients facing end-of-life grief. The researchers' efforts also will focus on developing cost-effective communication systems for underserved populations; studying the effect on patient and caretaker quality of life when clinicians receive electronic patient health-status information; measuring the cost and effectiveness of integrating a computer-based system with NCI's telephone information service; and building an interdisciplinary structure that supports discourse, understanding and modeling of cancer-communication technologies.

Funding for the new center is part of a broad NCI initiative supporting research and outreach aimed at increasing knowledge about, tools for, access to, and use of cancer communications by the public, health professionals and cancer patients and survivors.

The goal, according to the NCI, is to produce new knowledge about and techniques for communicating complex health information to the public, with the potential for achieving reductions in the U.S. cancer burden.

"People often react to cancer as just a random and paralyzing catastrophe," says Gustafson. "But cancer is a host of different diseases to be prevented, treated or managed. Communication is the bridge that helps patients and their families know what's going on and what to do about it, or gives them tools to make decisions and plan how to deal with the disease."