More and more, people have access to personal technology (e.g., smartphones, tablets) and are using it as a tool to help meet their health care needs. Turning to technological solutions, including the use of mobile health (mHealth) and electronic health (eHealth) approaches, is becoming more common in health care including the care of patients with sickle cell disease. However, there is no smartphone app to help patients with sickle cell disease take medicine as directed.
Clinical researchers are often limited by the technical capabilities of the health system in which they operate, slowing research and leading to costly and mismatched technology that doesn’t deliver. Researchers are often handed technologies and tools that don’t meet their needs, are difficult to use, and require lengthy onboarding processes. All of this is a distraction for the research at hand, and the patients these clinicians serve.
Mismatched tools are part of a larger challenge, ensuring meaningful participation from research participants, adherence to medicinal regimen and the adoption of new behaviors. The role of the clinical researcher is complex and navigates emotional, social, physical, and digital needs. In the case of our work with St. Jude, an adolescent patient population managing serious chronic disease with ineffective digital tools becomes a significant barrier to better health and valuable scientific research.
The medicine only works for those that take it; obvious but important. One of the most common barriers for patients managing chronic disease is inconsistent medicinal regimens and poor health education. Despite evidence of the effectiveness of Hydroxyurea Therapy to manage Sickle Cell Disease, adherence is low among patients,
Inconsistent adherence leads to a decline in health and undermines the patient’s belief that Hydroxyurea has a positive impact on their health and well-being – further reducing better outcomes. Poor adherence to a medication regimen turns an effective therapy into an ineffectual, lost opportunity in patients with SCD who often have less access to healthcare providers and comprehensive sickle cell programs at a critical time in their lives: adolescence.
Agency 39A began working directly with Jane S. Hankins, MD, MS to improve care for adolescent patients managing Sickle Cell and its related health impacts. The program quickly defined the patient-experience, mapping out much needed touchpoints along the patient and research continuum.
Working with Agency 39A empowered Dr. Hankins and St. Jude to create the tailored disease management app they needed, no longer bound by existing technology. Our combined research and prototyping team worked side-by-side with patients to understand the context of their needs, home life, and available technology while developing the data-driven administrative portal for clinicians and researchers gathering the essential patient data.
The result - a PHI / HIPAA compliant digital therapeutic, that changes patient behaviors, provides better data, and re-engages the patient in key health-decision making moments. By placing design decisions in the hands of the patient and the care provider, the team at St. Jude was able to transform internal processes that are defining a new standard of care.
Our pilot project conducted at St. Jude demonstrated that text messages improved adherence rates for hydroxyurea - read more about this study at the National Center for Biotechnology Information and Dr. Hankins blog.
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