Accepted for/Published in: JMIR Research Protocols
Date Submitted: Apr 24, 2023
Date Accepted: May 25, 2023
Feasibility of Implementation of a Mobile Digital Personal Health Record to Coordinate Care for Children and Youth with Special Healthcare Needs in Primary Care: A Mixed Methods Study Protocol
ABSTRACT
Background:
Digital personal health records (PHR) integrated with electronic health records via Fast Healthcare Interoperability Resources (FHIR) are promising tools to support care coordination for children and youth with special healthcare needs (CYSHCN). Real-world implementation and evaluation are needed.
Objective:
This study’s objectives are to: (1) evaluate the feasibility of a FHIR-enabled digital PHR mobile application to coordinate care for CYSHCN; (2) characterize determinants of implementation; and (3) explore associations between adoption and patient/family-reported outcomes.
Methods:
This non-randomized, single arm, prospective feasibility trial will test use of the FHIR-enabled digital PHR mobile app by families of CYSHCN in primary care settings for a six-month period. We aim to enroll 40 parents/caregivers of CYSHCN; eligible CYSHCN are: age 0-16 years; receive primary care at a participating site; have complex needs that benefit from care coordination; at high-risk for hospitalization in the next six months; English-speaking; have requisite technology at home (internet access, Apple iOS© mobile device); and have an active online electronic health record patient portal account to which parent/caregiver has full proxy access. We will apply an intervention mixed methods research study design to link quantitative and qualitative (semi-structured interviews) data and characterize implementation determinants.
Results:
Participant recruitment began in Fall 2022. Over 300 potentially eligible patients were identified in EHR data before recruitment began. A family engagement panel in Fall 2021 generated formative feedback from family partners. Integrated analysis of pre-trial quantitative and qualitative data has further informed study procedures and recruitment processes.
Conclusions:
Findings of this study will inform how to integrate a FHIR-enabled digital PHR mobile app for CYSHCN into clinical care. Use of mixed methods and implementation research models will strengthen implementation in diverse clinical settings. The study is positioned to contribute toward advancing knowledge of how to use digital health innovations for improving care and outcomes for all CYSHCN. Clinical Trial: ClinicalTrials.gov: NCT05513235
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