Informatics, nursing team building useful Web portal for cancer patients
Cancer patients using the Web for answers about their conditions and the latest treatments are forced to maneuver through a massive maze of misinformation that could be harmful to their health. But a joint project between the Schools of Informatics and Nursing at Indiana University-Purdue University Indianapolis -- funded by a $250,000 grant from the Walther Cancer Institute -- seeks to avoid that puzzle through the development of a customized Web portal to deliver more personalized information to patients at the IU Simon Cancer Center.
An estimated two million Americans with cancer use the Internet to obtain their health information. While countless Web sites address patients' questions about cancer prevention and treatment, that information often is without a strong research base and may be outdated.
"At best, many Web sites deliver information that is not individualized to a specific patient concern and offer no opportunity for interaction with health care professionals," said Anna McDaniel, DNS, the project's principal investigator and. "At worst, these sites deliver information that might be detrimental."
McDaniel is professor and assistant dean of research at the IU School of Nursing, professor at the School of Informatics and member of the cancer center’s Cancer Control Program.
In addition to the IU Schools of Nursing and Informatics, members of the team include the IU Simon Cancer Center and the Department of Computer and Information Science at IUPUI. Dr. Paul Helft, clinical oncologist at the cancer center and assistant professor of the IU School of Medicine, serves as co-principal investigator on the project.
Charles Given and Barbara Given, researchers at Michigan State University, are collaborating on the project and are senior research scientists affiliated with the Walther Cancer Institute.
"Web-based sites that are tailored to the needs of cancer patients and those at risk for cancer will be one of our most important opportunities in the fight to reduce cancer morbidity and mortality," said Victoria Champion, DNS, leader of the cancer center’s Cancer Control Program and scientific director of the Mary Margaret Walther Program at the Walther Cancer Institute.
"A Web infrastructure will allow specific information for patients, help with problems associated with diagnosis and treatment, and provide preventive information and help," Champion added. "These sites can be used by patients, families and researchers to deliver state of the art cancer care, and as a base for innovative research projects."
In the first phase of the project, which will be tested at the IU Simon Cancer Center, the team will develop and test a Web portal using existing information technology. The portal has two levels of interaction: the public level allows any user to obtain quality-filtered evidence-based cancer information through the site. The second level is a secure layer and requires authorized access to specific applications that deliver customized cancer control interventions.
"We will pilot test a previously tested symptom management system that has been modified for delivery via the Web," said McDaniel. "The IU Simon Cancer Center portal will serve as a platform for accelerating the translation of useful interventions directly to patients and their families."
While patients, families and caregivers at the cancer center will be the first beneficiaries of the Web portal, it also will increase education, outreach and cancer information to institutions such as National Cancer Institute comprehensive cancer centers.
"Education is integral to patient decision-making about cancer care," said Dore Shepard, the cancer center’s clinical director for cancer programs. "This portal will benefit our patients and their loved ones."
The Web portal project recently got under way and is expected to be completed by 2008.
The Walther Cancer Institute is an Indianapolis-based nonprofit medical research organization committed to eliminating cancer as a cause of suffering and death. Since 1985, the institute has invested more than $85 million in cancer research in collaboration with major medical and educational institutions throughout the Midwest, including the IU schools of Medicine and Nursing. More information about the organization is at www.walther.org.