Interim Executive Director PALTOWN Development Foundation
Background: PALTOWN’s Facebook community, COLONTOWN, serves 8,000 colorectal cancer (CRC) patients and caregivers, the majority (81%) are late stage patients or caregivers, with 85% under the age of 60. Finding reliable information about treatment options as quickly as possible is life-altering for them. COLONTOWN University (CTU), a novel, online patient-created education platform generated from the thousands of information journeys in COLONTOWN, includes 6 Learning Centers on topics of high interest to patients. Here we illustrate how CTU is reaching more CRC patients both inside and outside our community, capturing more patients earlier in their cancer journey, and facilitating deeper engagement among patients, caregivers and HCP’s.
Methods: CTU’s Learning Centers address the information needs of patients across both the spectrum of disease education and CRC disease experience. In the CRC101 Learning Center, newly diagnosed patients find information they need to navigate the initial phase of their cancer journey. An example is a very detailed understanding of what to expect on the first chemo session. This level and quality of patient education also supports the oncology staff as patients begin their treatment being more informed and empowered about their care. CRC101 also includes a glossary of common terms, a First Week Survival Guide and an introduction to treatment modalities. For Centers focused on Diagnostic and Surveillance Testing, Clinical Trials and Precision Medicine, 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 specific patient-relevant content.
CTU’s unique model for disseminating complex information and presenting it in a patient-friendly way helps patients reduce anxiety and manage expectations, while supporting complicated discussions with oncology staff.
Results: As a patient-created, patient-driven resource, CTU has helped reduce patient anxiety, facilitated conversations between patients and HCP’s and resulted in deeper engagement in the community. An ongoing poll of CTU users in COLONTOWN (with 35 respondents; updated data expected in the coming month) showed CRC101 was the most visited page (77%). Members shared the information they learned with other patients/caregivers (84%) and oncology staff (59%) respectively. 73% of respondents said the information made them feel less overwhelmed, while 81% said they felt more confident in talking with oncology staff and 68% said CTU helped them make shared decisions with their care team. Since its relaunch in 2022, more than 12,000 visitors have engaged with CTU.
Conclusions: CTU demonstrates that patient-created disease education provides high value, relevant content that meets patient needs and supports HCP’s. Moreover, the depth and quality of the content and the way in which it is presented increases meaningful conversations and deeper patient engagement. CTU analytics provide insight into resource utilization and questions such as whether patients feel they have more productive interactions with their care teams as a result of using CTU. This novel platform has the potential to reach thousands if not millions of CRC patients and inform their cancer journeys with a suite of resources and support unique in the oncology space.
