Saturday, March 10, 2012

Empowering Breast Cancer Patients

Breast cancer patients report that providers often fail to understand their psychosocial,communication needs, and information skills needed to manage their illness. This is necessary since breast cancer patients very often have to deal with major life changes and potential emotional problems that often accompany these changes.

The internet is becoming an important source of information for breast cancer patients, but unfortunately very few web-based educational interventions integrate personal information from an EMR and also provide educational psychosocial support content concerning breast cancer treatment decision-making and care management.

Dr. Kuang- Yi Wen PhD, Assistant Professor in Cancer Prevention and Control Program at the Fox Chase Cancer Center in Philadelphia is studying how quality improvement initiatives to promote patient-center care within ambulatory settings can be based and designed on using health information and communication technology. AHRQ is providing the grant funding for this research that started in 2011 with the study to continue until 2016.

Eventually, the goal is to provide breast cancer patients with all of the resources available today through health information and help these patients integrate these resources into their personal medical records. This will help women easily obtain information on their own diagnosis and treatment and have the knowledge on how to best manage their individual care.

The randomized controlled trial now taking place at the Fox Chase Cancer is studying 120 breast cancer patients to assess the feasibility and the potential impact of using the “MyHealthPortal” with early stage breast cancer patients. The research is planned to provide a user-centered portal design that will gain the acceptance with both the targeted audience and healthcare providers.

The research study will include surveys to assess existing portal users satisfaction level, identify breast cancer patients information needs, and explore breast cancer clinicians attitudes and expectations regarding the implementation of a patient portal. The findings of this research will provide preliminary data to support a future proposal to study the efficacy and costs effectiveness of the “MyHealthPortal” system but this will be done in a larger study.

For more information, email Kuang-Yi Wen at