Empowering patients with multiple myeloma through the INSIST! program: Outcomes of biomarker testing education.
Abstract
e19545 Background: Multiple myeloma is a biologically complex hematologic malignancy in which biomarker testing is essential to risk stratification, treatment selection, and disease monitoring over time. Cytogenetic, molecular, and genomic testing inform prognosis and guide personalized treatment strategies; however, many patients report limited understanding of these tests and their implications for care decisions, particularly at relapse or disease progression. To address this gap, the Patient Empowerment Network developed the INSIST! Multiple Myeloma program to improve patient understanding of biomarker testing and support informed engagement in care. Methods: Since the program began in 2020, the INSIST! Multiple Myeloma program has delivered national patient education through virtual expert-led sessions, digital educational content, and downloadable resource materials. Educational topics included the role of biomarker and cytogenetic testing in treatment planning, frequency of monitoring, and strategies for effective patient-provider communication. Program reach and engagement metrics were analyzed, and participant feedback was reviewed to assess perceived changes in knowledge and confidence related to testing and treatment discussions. Results: The INSIST! Multiple Myeloma program demonstrated strong engagement and positive patient-reported outcomes. Since the program began in 2020, it has reached 27,868 patients and care partners nationwide. Participants engaged most frequently with expert-led educational content focused on biomarker testing, treatment decision making, and research updates, as well as downloadable patient resources designed to support informed discussions with healthcare professionals. Post-program survey responses indicated a strong positive impact on patient understanding and confidence. 94% of respondents reported increased understanding of multiple myeloma and health equity considerations. 89% percent indicated that the program gave them the knowledge and confidence to play a more active role in treatment decisions. 90% reported improved understanding of research and clinical trials, and 93% reported a stronger understanding of available treatment options. Conclusions: Patient-focused education programs centered on biomarker testing can meaningfully improve understanding and engagement among individuals living with multiple myeloma. The INSIST! Multiple Myeloma program supports patient activation as a critical component of precision oncology and aligns with ASCO’s emphasis on equitable access to personalized cancer care. Mikhael, J., et al. Treatment of multiple myeloma: ASCO and CCO joint clinical practice guideline. Journal of Clinical Oncology , 37(14), 2019.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (3)
Aicha M. Diallo
Patient Empowerment Network, Bothell, WA
Tracy T. Rode
Patient Empowerment Network, Bothell, WA
Joelys Gonzalez Bisono
Patient Empowerment Network, Bothell, WA