PALTOWN DEVELOPMENT FOUNDATION

Platform: colontown has grown since its inception in 2011 to more than 100 private facebook groups serving over 11,000 colorectal cancer patients and caregivers. Facebook offers no native capability to manage collections of groups in a centralized way, and provides very limited analytic and administrative capabilities. As colontown grows, these constraints pose an increasing burden on the management team's ability to effectively serve the membership. In addition, paltown has no control over features, data, or even how group members can access, view, and retrieve information. The community platform space now offers robust options for managing complex communities and associated resources. Migration to a dedicated hosted platform and branded mobile app using a commercially available solution would enable colontown to better serve current and future members in a private space. Paltown would retain control over data and would be able to leverage its disease education resources to support community members in a more effective way.in q3 of 2024, paltown began phase 1 of a project to migrate the colontown virtual colorectal cancer community from facebook to a dedicated platform and custom branded mobile app. As part of this project, paltown conducted a needs assessment, developed detailed project requirements, and completed a vendor landscape survey. Paltown selected and contracted with a software provider by the end of 2024. The project lead developed a detailed roadmap to enable work to begin in q1 of 2025 to build out the new site and app.

Empowered patient leaders workshops: paltown's empowered patient leaders (epl) workshops teach patients and caregiver members of our online community to become leaders, and role models for others both in and out of the colontown community. In 2024, our epl workshops were held both in person and virtually, and we also began work on an online asynchronous course to be launched in 2025. Paltown's program and management staff is drawn almost entirely from the ranks of epl graduates, as are our colontown community volunteers. Participants learn best practices in community management, share experiences, and work together to develop solutions for the many issues that arise in the conversations in colontown's 100+ neighborhoods.

Clinical trials & alanna project: colontown has collected deidentified trials data of real patients in a spreadsheet named the alanna project. This data includes real time updates on side effects, efficacy, and other real life experiences of patients in specific clinical trials. We have begun to expand on this work with the creation of the trials hub. This is a clinical trial research tool which allows members to access all available information on a specific trial within any area of colontown. A search of trial may garner links to posts in the community, alanna project updates, links to our featured clinical trials section on ctu, or a specific doctalk and the like. It will be a one stop shop for gathering the most relevant, patient centric data about a specific trial. In 2024 the focus has been on building out the back end of this repository.

Partnership with blkhlth: mid-2024, paltown was introduced to an atlanta-based non-profit organization, blkhlth, which focuses on addressing health inequities within the black community. This partnership resulted in joint funding to begin exploring the relationship between black americans and patient advocacy groups, like colontown. Through this connection, our organizations held two listening sessions, one virtual, one in-person, to listen and learn from the black community directly, about the barriers to joining and participating in patient advocacy. The information gathered during these two feedback sessions will guide our future work in 2025.

Derriere diplomats: derriere diplomats is paltown's patient and caregiver outreach program. Patients and caregivers sign up to represent colontown by bringing informational pieces to their local oncology centers; sharing the information with the medical teams as well as leaving brochures for other colorectal cancer patients. In 2024, 44 individuals signed up to represent colotown through this program.

2nd opinion project: provides financial support for stage iv colorectal cancer patients seeking second opinions and new treatment options. Support is provided for travel, lodging, and other expenses directly related to the second opinion appointment.

Leadership summit: as an entirely virtual organization, we try to gather in person once a year to plan for the coming year's programs. We held our 2023 retreat in the dc area, working through a full agenda generating a wealth of ideas and energy for the future of paltown. We also enjoyed the rare chance to engage in team-building exercises.