Data Standards for Comprehensive Shared Care Planning for People Living With Multiple Chronic Conditions: Critical...

Uninteroperable health data impedes care and research-especially for people with multiple chronic conditions (MCC) or from disadvantaged communities. By enabling the sharing of person-centered data, standards-based care plans may improve health outcomes and reduce disparities.

Develop and test interoperable electronic e-Care planning tools to collect, aggregate, and share person-centered data for MCC healthcare and research.

Using participatory and agile design, we developed, implemented, and evaluated e-Care plan tools-including data standards and clinician- and patient/caregiver-facing e-Care plan applications (eCarePlanner and MyCarePlanner). The Consolidated Framework for Implementation Research Process Redesign and the Systems Engineering Initiative for Patient Safety model informed a mixed methods evaluation to gather feedback from patients, caregivers, and clinicians across formative, iterative, and summative stages.

The apps successfully connected with 4 electronic health records at 17 institutions. Evaluation participants included 57 patients/caregivers and 15 clinicians. Patients and caregivers were predominantly aged 65 years or older, White, and well-educated. Most participants were comfortable using the app (97%). Most felt app loading was timely (90%), and the app would support complex care coordination (63%). Usability scores were lowest for the ability to improve care team communication (48% agreed/strongly agreed) and for inconsistencies across app sections (37% agreed/strongly agreed). Key themes from interviews included challenges in moving health information across settings and the apps' potential to overcome these challenges, thereby improving the frequency and quality of care planning.

This project provides a proof-of-concept for standards-based tools to collect, aggregate, and share patient-centered health and social data across health care and research settings.