Challenges: 

. Ensuring meaningful participation, adherence to medicinal regimens, and the adoption of new behaviors are major hurdles. In our work with St. Jude, we addressed the barriers adolescent patients with chronic diseases face, particularly the inconsistent adherence to Hydroxyurea Therapy for Sickle Cell Disease (SCD). Despite its proven effectiveness, low adherence undermines health outcomes and patient belief in the therapy. Poor adherence turns an effective treatment into a missed opportunity, especially for adolescents with limited access to healthcare providers and comprehensive SCD programs. Our efforts aimed to improve digital tools and health education to enhance patient engagement and therapy adherence, ultimately supporting better health and valuable research outcomes.

Solutions: 

Agency39A partnered with Jane S. Hankins, MD, MS, to enhance care for adolescent patients managing Sickle Cell Disease and its related health impacts. We quickly defined patient experiences, mapping essential touchpoints along the patient and research continuum. Collaborating with Agency39A enabled Dr. Hankins and St. Jude to develop a tailored disease management app, free from the constraints of existing technology. Our research and prototyping team worked closely with patients to understand their needs, home environments, and available technology. This hands-on approach informed the creation of a data-driven administrative portal for clinicians and researchers, facilitating the collection of essential patient data. Our solutions empowered St. Jude to provide better care and support valuable scientific research.

Results: 

The result was a PHI/HIPAA-compliant digital therapeutic that transforms patient behaviors, delivers better data, and re-engages patients at crucial health-making moments. By empowering both patients and care providers with design decisions, Agency39A helped St. Jude redefine internal processes, setting a new standard of care. Our pilot project at St. Jude demonstrated that targeted text messages significantly improved hydroxyurea adherence rates. Learn more about this study at the National Center for Biotechnology Information and Dr. Hankins' blog.