A Fast Healthcare Interoperability Resources (FHIR)-enabled digital personal health record mobile app has the potential to enhance care coordination for families of children and youth with special healthcare needs (CYSHCN) and to inform improvements in family-centered care coordination that will be highly impactful for populations of patients with complex health needs across the age spectrum. The purpose of this study is to evaluate the feasibility of a digital personal health record (PHR) mobile application integrated with electronic health records by FHIR data standards to enhance care coordination for families of CYSHCN. The study will enroll 40 families (adult parents/caregivers) of CYSHCN in pediatric primary care clinics to use the digital PHR mobile application as a tool for coordinating their child's care over a 6-month period. Using a single group, non-randomized study design and convergent mixed methods analyses, the study will: (a) determine the feasibility of FHIR-enabled integration of the mobile application with electronic health records for care coordination; (b) identify barriers and facilitators to implementation in real-world settings; and (c) examine associations between level of app adoption by families and family-reported outcome measures.
Age range
18 Years
Sex
ALL
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A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Technical feasibility (FHIR data transfer EHR to app)
Timeframe: Up to 6 months
Technical feasibility (FHIR data transfer app to provider dashboard)
Timeframe: Up to 6 months
Implementation (feasibility)
Timeframe: End of study (6 months)
Implementation (acceptability)
Timeframe: End of study (6 months)
Implementation (appropriateness)
Timeframe: End of study (6 months)
Change in parent/caregiver-reported degree of care integration, as measured by Pediatric Integrated Care Survey (PIC)
Timeframe: Baseline, 6 months
Change in health-related quality of life (HR-QOL)
Timeframe: Baseline, 3 months, 6 months
Change in usability, as measured by the System Usability Scale (SUS) (provider)
Timeframe: Baseline, 6 months
Net promoter score (NPS) (provider)
Timeframe: End of study (6 months)