The 10 million breast cancer survivors around the world are at lifetime risk of developing lymphedema, a chronic condition that causes swelling of the limbs and affects physical and mental health. Second only to breast cancer recurrence, lymphedema is the most feared effect of breast cancer treatment.
Now, University of Missouri researchers are developing a place in cyberspace where relevant and timely information on the condition can be easily stored, searched and reviewed from anywhere online.
Chi-Ren Shyu, principal investigator for the project and director of the MU Informatics Institute, said researchers throughout the world are continually learning about lymphedema and how it can be treated. The cyberspace project will bring researchers, medical professionals and care providers together with the goal of improving health care through the availability of up-to-date, evidence-based research.
“Merging all of the data into one virtual space and discovering clinically significant knowledge from the haystacks of data will make cutting-edge research and treatments available to patients sooner,” Shyu said.
The percentage of breast cancer survivors who develop lymphedema is not precisely known, although it is conservatively estimated that as many as half of survivors may experience lymphedema during their lifetime. Currently, people looking for information about lymphedema treatment have to visit dozens of medical websites or consult a best practices document, which has not been updated since 2006.
The new system will enable immediate access to data, best practices, literature and research from around the world as it is posted online, all in a single, searchable online database.
“The cyber-infrastructure, once complete, can be applied to other diseases and chronic conditions, such as diabetes or cardiovascular disease,” Shyu said. “Potential users include researchers, medical professionals, social workers, patients and their families.”
Shyu and his informatics team from the College of Engineering are working with Jane Armer, professor in the MU Sinclair School of Nursing and director of the American Lymphedema Framework Project, housed at Ellis Fischel Cancer Center. Their research is funded by a three-year grant awarded by the National Library of Medicine Applied Informatics Program.
In three years, Shyu and Armer plan to complete a system that automatically will pull research findings and new information from scientific journals and association websites through an automated data mining procedure. Shyu has an agreement with selected health care facilities from throughout the country to provide real-time, anonymous patient data so practitioners can understand how patients in different areas of the country are affected by lymphedema and its treatments.
“The development of an informatics depository for a data set holding key information for all patients with lymphedema of any cause offers enormous potential for answering research questions that are difficult to study with small data sets with varying criteria for lymphedema,” said Armer. “This cyber-database will help us unlock the door to more immediate access to the latest information on evidence-based treatment and risk-reduction.”
Faculty members and clinicians participating in the program include those at Ellis Fischel Cancer Center, MD Anderson Cancer Center in Houston, University of Chicago and Kenny Rehabilitation Institute’s Virginia Piper Cancer Institute in Minneapolis, as well as specialized lymphedema practices. Shyu plans to add international sites before the system becomes available to the public.