Managing Sickle Cell Disease goes beyond medicinal adherence to Hydroxyurea. Patients must actively manage hydration, body temperature, and nutrition — each of which plays an important part in their health and well-being. Maintaining this kind of physiological balance is challenging for any patient, but for an adolescent, it can be daunting. In partnership with St. Jude Children’s Research Hospital we are pioneering the use of digital therapeutics and behavior change platforms to improve the lives of adolescent patients managing chronic disease.
Read the study:
Development of the InCharge Health Mobile App to Improve Adherence to Hydroxyurea in Patients With Sickle Cell Disease: User-Centered Design Approach
The challenge goes beyond the disease
Pediatric hospitals and programs for Pediatric Chronic Care, such as that of St. Jude Children’s Research Hospital, set a very high standard for medical and patient experience. Committed researchers, physicians, and care-teams provide an incredible standard of care and education, further raising patient expectations. Although pediatric patients become experts in understanding their condition, that expertise doesn’t necessarily translate knowledge into effective self-care. As younger patients grow into adolescence and transition to adult care and self-management they encounter significant threats to their health and significant increases in the cost of out of pocket and PMPY (Per Member Per Year) costs.
Agency 39A’s research indicates that good science and great care are less effective when the audience isn’t listening.
There are significant barriers to skill development that patients face. Adolescent patients transitioning to adult care are largely on their own when developing the daily habits that result in continued good health. Developing the necessary disease management skills requires intensive training and consistent routines — a task digital therapeutics are designed to support. Teen patients that are accustomed to tailored care and information provided by their care-team are wary and distrustful of web-based information, they are discriminating information consumers and seek out trusted information. Additionally, adolescent and young adult (AYA) patients tend to listen to peer groups before parents, making co-managed care at home even more challenging.
Our partnership with St. Jude pioneered the design and development of an mHealth intervention for individuals with Sickle Cell Disease (SCD) to improve adherence to hydroxyurea, using a patient-centered design informed by specific barriers to hydroxyurea adherence and utilization in AYA populations. The unique nature of our relationship provided us side-by-side access to some of the country’s leading hematologists, researchers, and care-providers. Agency 39a provided a patient-centric digital transformation model, mHealth application design, HIPAA compliant development and most importantly: Digital Healthcare Expertise.
Application Development in Clinical Settings
Digital Therapeutics requires more than traditional user-centered approaches to product design in healthcare environments. Applied healthcare expertise and detailed understanding of the disease are prerequisites to successful therapeutic platforms. Our design practice is research-driven and validated — a methodology that ensures the application we develop creates a measurable improvement in the health and well-being of the patients and researchers we serve. Implementation goes beyond research-driven design and patient-centric methods, it requires the ability to navigate and adhere to HIPAA regulations, ensuring the safety and privacy of every patient that uses our application. Successful Digital Therapeutics requires an understanding of the technical healthcare enterprise environment to the same degree they require an understanding of the patient — a combined skillset we are proud to have and to provide for our clients.
Our work, like that of our clinical partners, is evidence-based. We actively recruit and employ researchers, physicians, and patients to participate in product development. This improves patient outcomes and adherence through a rigorous approach to testing and learning from care-providers and patients throughout design and development. We are learning how mHealth applications have the potential to improve health outcomes for patients by tracking medicinal adherence, pain, mood, exercise, nutrition, and hydration. The data provides an unprecedented view of the patient’s life and helps researchers and physicians provide tailored dynamic care plans.
Data is patient empowerment
Digital Therapeutics gives patients access to trusted information, a direct line to an entire team of care providers, and a view into their daily, weekly, and monthly routines. Our applications have created a feedback mechanism that empowers the patient to make better health decisions, take control of their health outcomes, and actively participate in their care. Digital Therapeutics is advancing and will continue to play an increasingly larger role in disease management and regular care, giving patients agency over their health as never before.
Read more about the InCharge program and the JMIR research paper: Development of the InCharge Health Mobile App to Improve Adherence to Hydroxyurea in Patients With Sickle Cell Disease: User-Centered Design Approach