Feasibility Study of a Mobile Digital Personal Health Record for Family-Centered Care Coordination for Children and Youth with Special Healthcare Needs

Coordinating complex care across multiple providers and systems remains a major challenge for families of CYSHCN, who require services beyond those needed by most children due to chronic conditions. Although CYSHCN represent nearly one in five children in the United States, more than 85 percent—over 12 million children and their families—report not having access to a well-organized system of care. Digital care plans—comprehensive, portable personal health records (PHRs) integrated with electronic health records (EHRs)—are promising tools to support care coordination, but many families still rely on manual tools such as binders and notebooks. FHIR-enabled digital health tools offer a path to better integration and usability for families, though adoption remains limited.

To address this gap, the research team developed Caremap, a mobile app co-designed with families and clinicians to support care coordination by integrating EHR data using FHIR, organizing health information on a caregiver’s device, and allowing families to tailor content to their needs and preferences. After Caremap showed promise in earlier proof-of-concept testing, this study was conducted to evaluate its feasibility, usability, and real-world implementation among families of CYSHCN and their providers.

The specific aims of the research were:

• Evaluate the feasibility of a digital PHR mobile application with FHIR-enabled EHR integration to coordinate care for CYSHCN.
• Identify barriers and facilitators of mobile app implementation via a mixed-methods evaluation.
• Explore associations between mobile app adoption by families and family-reported outcomes.

This single-site, non-randomized study tested Caremap use by parents/caregivers of CYSHCN over a 6-month period in pediatric primary care clinic settings. Twelve parents/caregivers of CYSHCN and nine primary care providers participated. Researchers used a mixed methods design, collecting quantitative data from app usage, EHR-to-app data transfers, and surveys at baseline and follow-up. They gathered qualitative data from participating parents/caregivers through a pre-study feedback group and post-study interviews to better understand user experiences. In response to user feedback, the team made multiple app updates throughout the study period to address technical issues and improve usability.

The study demonstrated that a FHIR-enabled mobile app like Caremap was technically feasible to implement in a real-world environment and was valued by families of CYSHCN for core features such as EHR data integration and personalized goal tracking. While early adoption was achieved, sustained engagement was constrained by technical issues, limited options for personalization, and lack of real-time technical support. These challenges pointed to the need for investment in usability, functionality, and dependable user support as a critical part of digital health research. The findings underscored the importance of designing digital tools around family needs and demonstrated that iterative development and family engagement are essential to long-term success. Although a planned clinician-facing dashboard could not be fully evaluated, the study provides a strong foundation for future research, including multi-site trials and potential adaptation of the app for adults with complex care needs.