Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study

BACKGROUND: Asthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design. OBJECTIVE: To describe a case study of a pediatric asthma SDM health IT solution’s development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team. METHODS: We adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) “real-world users” consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics. RESULTS: Using this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app. CONCLUSIONS: This project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process.