Colontown University: Patient-created disease education.

Abstract

205 Background: PALTOWN’s Facebook community, COLONTOWN, serves over 6,000 colorectal cancer (CRC) patients and caregivers. 81% of members are late stage patients (or late stage caregivers), and 85% are under the age of 60. They are highly motivated to find reliable information about treatment options as quickly as possible. Many arrive with little prior CRC education. Here we illustrate the creation of a patient-centric disease education program, COLONTOWN University (CTU), developed from the conversations and information journeys in COLONTOWN. Methods: CTU is a unique model for disseminating patient-facing disease education. CTU’s patient and caregiver staff develop original resources from a patient perspective, and work with principal investigators, testing companies, and other partners to create content specifically designed for the Learning Centers. Each Center provides resources to address the information needs of patients across both the spectrum of disease education and of CRC disease experience. Within the University’s online platform, self-contained Learning Centers offer structured resource libraries on topics of high interest to patients. Results: CTU creates patient-centric disease education that is accessible and more sophisticated than typical patient education materials. The discussions in COLONTOWN, in groups focused on specific biomarkers, metastases locations, and treatment modalities, provide members with the framework for understanding their disease. CTU gives them the resources they need to have informed discussions with their care teams. The CTU platform provides insight into what resources are most utilized. Survey tools facilitate an understanding of whether patients feel they have access to more treatment options, and have more productive interactions with their care teams, as a result of the education provided by CTU and the conversations with their peers in COLONTOWN. Conclusions: In its first year, CTU has become the education resource of choice for the thousands of members of COLONTOWN. Clinicians, principal investigators, and industry have all been enthusiastic partners in the development of resources. The positive response to CTU demonstrates the value of this model of patient-driven disease education.[Table: see text]