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.