Activating AML patients through empowering cancer communication strategies.
Abstract
e18512 Background: As the number of people with Acute myeloid leukemia (AML) increases, patients and their care partners will need tailored information to foster informed, empowered, and engaged care. The Patient Empowerment Network launched the [ACT]IVATED AML program in 2023 to promote communication between AML patients and care partners and oncologists, remove barriers to accessing care, and improve health literacy among Black and Latinx populations, who often face challenges when seeking and accessing cancer information. We assessed engagement with the [ACT]IVATED AML program. Methods: The [ACT]IVATED AML program consists of almost 70 individual web pages across four domains: Expert Interview videos (brief >5min responses to a single question by leading cancer oncologists), Patient Resources, Patient Vignettes (first person accounts of their cancer experience), and Activity Guides. Materials are available in English and Spanish. We used a mixed-methods approach to assess engagement. Data came from website analytics and a post-program survey with 20 responses. Results: The [ACT]IVATED AML program has shown exceptional growth in engagement, with a 70% increase in views from Q1 2023 (14,793) to Q4 2024 (25,217). Users were particularly interested in the Expert Interviews, with 4 among the most visited: “What Are Potential Impacts of Artificial Intelligence on AML Patient Care?” “How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care.” “What is the Role of Bone Marrow Biopsies in AML Treatment.” And “Black and Latinx AML Patients: The Impact of Cultural Beliefs.” Users also sought the AML resource guides. The Spanish guide, which was carefully developed using culturally relevant medical language, was downloaded 141 times in 2023 and 482 times in 2024 (a 241% increase). The survey responses indicated strong, positive impact on patient confidence: 80% strongly agreed that the program made them feel more confident and empowered to speak up when they have questions about their care; 80% strongly agreed that the program gave them the knowledge and confidence to play a more active role in treatment decisions; and 65% strongly agreed that the program increased their understanding of cancer or their condition. When asked to explain what they had learned from the program, respondents said they valued the expert tips and the questions they could ask their cancer providers. Sample quotes were: “The tips are great, particularly for seeking second opinions” and “I live for these amazing tips these experts provide. I took the guide and the tip from this program to my doctor for a discussion.” Conclusions: This culturally resonant program successfully reached thousands of viewers and empowered some to engage with their healthcare providers. Such engagement suggests that people are actively seeking information about AML. The findings have implications for AML cancer communication strategies with Black and Latinx populations.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (3)
Aicha M Diallo
Patient Empowerment Network, Bothell, WA
Joelys Gonzalez Bisono
Patient Empowerment Network, Bothell, WA
Tracy T. Rode
Patient Empowerment Network, Bothell, WA