Activating MPN patients through empowering, patient-centered education.

Abstract

6577 Background: Patients living with myeloproliferative neoplasms (MPNs) face complex disease management, evolving treatment options, and barriers to accessing reliable, culturally relevant information. These challenges disproportionately affect underrepresented populations, including Black, Latinx, Indigenous, rural, LGBTQIA+, and veteran communities. The [ACT]IVATED MPN program was developed to improve health literacy, patient activation, and self-advocacy among individuals newly diagnosed with MPNs, while remaining relevant across all stages of disease. Methods: The [ACT]IVATED MPN program delivers expert-verified, multimedia educational content designed to support patient and care partner engagement in care. Program components include multilingual expert interview videos, real-world patient vignettes, downloadable health literacy tools, and a comprehensive resource guide available in English and Spanish. Content is distributed digitally and through culturally trusted community organizations to increase reach among underserved populations. Program reach and impact are assessed through digital engagement analytics and post-program participant feedback. Results: To date, the [ACT]IVATED MPN program has reached over 5,000 patients and care partners. Preliminary program evaluation data indicate that 100% rated their overall experience as positive or somewhat positive, with 83.3% reporting a positive experience. Following participation, 90.9% of respondents agreed or strongly agreed that the program increased their understanding of MPNs. Indicators of patient activation were high, with 100% of participants reporting increased confidence to speak up with questions about their care and 95.7% reporting greater knowledge and confidence to take an active role in treatment decisions. Conclusions: The [ACT]IVATED MPN program demonstrates the feasibility and value of a patient-centered, equity-focused education model in supporting health literacy, self-advocacy, and engagement in care among individuals living with MPNs. Scalable, multilingual educational interventions may complement clinical care by promoting shared decision-making and reducing disparities in access to MPN-related information and resources. Hibbard, J. H., & Greene, J. (2013). What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs. Health Affairs, 32 (2), 207–214. https://doi.org/10.1377/hlthaff.2012.1061.