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) —a re evidence-based tools to support coordination, but most families still rely on paper. FHIR offers a path to better integration and usability, 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. While Caremap showed promise in earlier 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 as follows:

• 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 over a 6-month period in pediatric primary care clinics. Twelve parents 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 through a pre-study feedback group and post-study interviews to better understand user experiences. In response to user feedback, the team made time-sensitive app updates during the study to address technical issues and improve usability.

The study demonstrated that a FHIR-enabled mobile app like Caremap is technically feasible and 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 support. These challenges point to the need for continued investment in usability, functionality, and dependable user support. The findings underscore the importance of designing digital tools around family needs and show that iterative development and family involvement 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 multisite trials and potential adaptation of the app for adults with complex care needs.