JMIR Publications

ABSTRACT

Background:

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. To achieve this, effective, scalable, accessible, and sustainable strategies are needed. Digital health offers potential solutions but require a rigorous scientific approach in its design to address the needs of the target population.

Objective:

To use a theory-based and person-centered approach to developing and adapting a digital intervention that improves lifelong CHD care.

Methods:

The intervention planning included the combination of theory-based behavioral framework, semi-structured qualitative interviews with patients and clinicians, and community-based participatory research (CBPR). The primary behavioral target was patients’ activation skills; skills that promote patient engagement with CHD care. We used the Capability, Opportunity, and Motivation (COM) and Theoretical Domains Framework (TDF) of the Behavior Change Wheel (BCW) theoretical model to identify determinants of the target behavior and design intervention components. To make the interventions equitable and relevant to diverse patients, we incorporated the principles of digital health equity, diffusion of innovation, and behavioral economics.

Results:

We interviewed 54 participants (37 diverse patients with CHD and 17 clinicians) and engaged 21 community partners representing 4 advocacy organizations. The COM- and TDF-guided CHD patient engagement framework identified the design objectives and key features of the digital intervention to address challenges uniquely faced by patients with CHD. Four emerging hopes for the digital tool included providing easy access to credible resources, uplifting patient voices, customizing to patient needs, and centering positivity and joy. The digital tool, named by community partners as Empower My Congenital Heart (EmpowerMyCH), was implemented within the web- and mobile-based, Apple- and Android-compatible, Eureka Digital Research platform (University of California, San Francisco). Key intervention components include a digital medical passport, expert and peer guidance, and peer connections and support. Six intervention functions from the BCW (education, training, modeling, enablement, persuasion, and environmental restructuring) were mapped to the intervention components. “Empowerment” and “Peer Empowerment” quotes are used as motivational, confidence-building messages from clinicians and patients, respectively, to reinforce the patient’s role as an active participant in their care.

Conclusions:

The EmpowerMyCH digital tool, developed using behavior change theories and CBPR approaches, offers rapidly scalable intervention components (digital medical passport, education on managing CHD, and community support) that can be delivered outside the clinic visits. EmpowerMyCH redefines how we support adults with chronic conditions, such as CHD, to be actively involved in their care and could potentially improve outcomes. Clinical Trial: The National Clinical Trial number for this study is NCT06581484.