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

1)抽象

1 ABSTRACT 2 3 Coordinating care across a complex web of providers and services on their own is 4 stressful and isolating for families of children and youth with special healthcare needs 5 (CYSHCN); thus, better care coordination solutions are critically needed. Digital personal health 6 records (PHR) that allow families to securely access, manage, and share their child’s health 7 data across multiple information and electronic health record (EHR) systems are promising 8 solutions. Central to digital PHRs being able to fulfill their promise are Fast Healthcare 9 Interoperability Resources (FHIR) – updated data standards that facilitate secure data access 10 and sharing between third party mobile applications (apps) and EHRs. Despite their importance, 11 FHIR technologies have yet to be widely adopted. A FHIR-enabled digital PHR mobile app 12 (Caremap) was co-designed with families and clinicians to coordinate care for CYSHCN and 13 has been positively reviewed by families in preliminary testing. Implementation and evaluation of 14 the Caremap mobile app in real-world setting is now the critical next step forward. 15 We will conduct a single group, non-randomized, feasibility study with 40 families (adult 16 parents/caregivers) of CYSHCN in pediatric primary care clinics to use the digital PHR mobile 17 application as a tool for coordinating their child’s care over a 6-month period. The primary study 18 outcome of overall feasibility will include measures of technical feasibility (FHIR-enabled 19 integration of the mobile app with the EHR) and implementation outcomes in real-world clinical 20 environments. Using a convergent mixed methods design, we will merge quantitative feasibility 21 data and two qualitative data sources (semi-structured interviews with families and providers; 22 family stakeholder engagement panels) to identify implementation barriers and facilitators. 23 Using pre/post analyses of baseline and 6-month family-reported survey measures, we will 24 explore associations between level of family app adoption and family-reported outcomes. 25 This proposal is highly innovative because it will be the first FHIR-enabled digital PHR 26 mobile app implemented to enhance care coordination for CYSHCN via secure access and 27 sharing of EHR data and family-reported health insights. The findings will be highly significant 28 because they will support a future multi-site pragmatic, cluster randomized trial to evaluate the 29 effectiveness of enhanced care coordination with a digital PHR mobile app compared to usual 30 care coordination. Due to similarities in needs between CYSHCN and adults with multiple 31 chronic conditions, the study’s findings will inform improvements in family-centered care 32 coordination that will be highly impactful for complex populations across the age spectrum.