Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions

STATUS: Completed Project

BACKGROUND

Interest in pragmatic research among researchers and key funding organizations is growing due to increased recognition that findings from traditional randomized trials may not apply to “real-world” situations. However, lack of interoperability and exchange of data across electronic health records (EHRs) and other health information technology systems creates barriers to pragmatic patient-centered outcomes research (PCOR), as essential data on patient-centered outcomes, as well as health risk and promoting factors, are frequently missing, inconsistent, or difficult to compile across settings and conditions. Data aggregation is particularly important and challenging for people with multiple chronic conditions (MCC), who undergo frequent care transitions (e.g., hospital to home, primary care to specialist, etc.) These individuals have complex health needs handled by diverse providers, across multiple settings of care. As a result, their care is often fragmented, poorly coordinated, and inefficient. These challenges will increasingly strain the U.S. health system, with the aging of the U.S. population. PCOR is needed to better understand optimal care for these complex patients, yet comprehensive data enabling the study of factors influencing outcomes across multiple conditions and disease states in real-world settings are largely unavailable.

In addition to work and deliverables described here, the MCC e-Care Plan project has been expanded through additional rounds of funding, yielding a patient and caregiver-facing version of the e-care plan application, as well as additional data standards for long COVID.

PURPOSE

This project built data capacity to conduct pragmatic PCOR by developing interoperable electronic care (eCare) planning tools to facilitate aggregation and sharing of critical patient-centered data across home-, community-, clinic- and research-based settings by:

• Developing and expanding data standards for four use case conditions: chronic kidney disease (CKD), cardiovascular disease (CVD), diabetes, and chronic pain with opioid use disorder (OUD), including cross-cutting considerations (e.g., social risks, functional status, cognitive status).
• Developing an open-source, SMART on FHIR eCare plan application for use by clinicians to manage people living with MCC, as well as an accompanying HL7® FHIR® Implementation Guide (IG).
• Establishing an eCare plan repository and application development collaborative to support the project’s development, testing, piloting, and implementation efforts, and provide an open source repository.
• Disseminating all project products through free, open source channels./li>

KEY IMPACTS

Enhancing analytic resources: MCC eCare Plan app and FHIR Implementation Guide
The eCare Plan app and implementation guide support clinicians in creating a shared longitudinal care plan that includes patients’ prioritized health and social concerns, goals, preferences, interventions, and health status. The PCOR community can expand upon the eCare Plan app’s open-source code to build a version of the app suitable for a variety of different use cases. Additionally, the FHIR IG enables researchers and healthcare organizations to implement the FHIR standards to support data interoperability.

Improving the access and use of data: Enabling data sharing across different settings
By defining, organizing, and standardizing patient-reported and EHR data from various sources into a single eCare Plan, the project enabled data sharing across different settings (i.e., home, community, health care, and research) using different EHRs to support patient-centered care coordination.

PUBLICATIONS

Comprehensive MCC Data Elements and Standards Set. This spreadsheet documents data elements, attributes, value sets, and FHIR mappings identified for CKD, chronic pain, type 2 diabetes, and CVD.

MCC eCare Plan Clinician-Facing App. The code for the clinician-facing SMART on FHIR eCare Plan app is available through GitHub.

eCare Plan HL7® FHIR® Implementation Guide. The implementation guide for the clinician-facing eCare Plan app defines how to represent coded content (e.g., value sets) used to support the care planning activities for patients with MCC.

Assessing Progress Toward the Vision of a Comprehensive, Shared Electronic Care Plan: Scoping Review. This publication reviews the landscape of e-care plans and care plan-related initiatives to inform the creation of the comprehensive, shared e-care plan.

Project Final Report. This report documents the usability testing and evaluation results from pilot testing the eCare Plan app, including lessons learned and recommended app updates.