Digital Health Intervention to Promote Lifelong Specialized Care in Adults with Congenital Heart Disease: Study Design

There is a critical need to support patients with congenital heart disease (CHD), especially during their young adulthood, to help maintain lifelong care with adult CHD specialists. The near ubiquitous use of digital tools, especially among the young adults, offers potential solutions to develop effective, scalable, accessible, and sustainable strategies to support these patients. This study describes the development of a digital tool using the combination of theory-based behavioral analysis, semi-structured interviews with 54 patients and clinicians, and community-based participatory research approaches. Four hopes for the digital tool emerged: easy access to credible resources, uplifting of patient voices, customizing to patient needs, and centering positivity and joy. The digital tool, named by community partners as Empower My Congenital Heart (EmpowerMyCH), is web- and mobile-based, Apple- and Android-compatible. Key intervention components include a digital medical passport, expert and peer advice, and peer support. EmpowerMyCH redefines how we support patients to be actively involved in their care and could potentially reduce some care gaps.