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Data Capacity for Patient-Centered Outcomes Research through Creation of an Electronic Care Plan for People with Multiple Chronic Conditions 2.0: Development of the Patient-Facing Application

Improve Data Capacity to Conduct Pragmatic, Patient Centered Outcomes Research through Development and Refinement of Interoperable Electronic (eCare) Plans
Agency
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
  • Agency for Healthcare Research and Quality (AHRQ)
Start Date
  • NIDDK: 4/23/2020
  • AHRQ: 5/15/2020
OS-PCORTF Strategic Plan Alignment

  • Primary: Goal 4. Person-Centeredness

     

 

STATUS: Completed Project

BACKGROUND

Pragmatic trials and other research designs using “real-world” data use health information technology systems such as electronic health records (EHRs) to expedite use of point-of-care data to inform knowledge on the effectiveness of health interventions. However, lack of interoperability across systems is a barrier to pragmatic patient-centered outcomes research (PCOR). EHRs often lack essential data on patient-reported outcomes, health-related social needs, and patient goals. Additionally, data are often incomplete across care settings, and merging these data can be cumbersome.

The electronic care (eCare) Plan 2.0 project builds on the eCare Plan 1.0 project, which improved data capacity for pragmatic PCOR by developing an open-source clinician-facing eCare Plan application. The application and corresponding implementation guide support research efforts and clinical care delivery for individuals living with multiple chronic conditions (MCC). This project developed an analogous patient-facing eCare Plan application to facilitate collection and exchange of data on patients living with chronic kidney disease (CKD), cardiovascular disease (CVD), diabetes, and/or chronic pain with or without opioid use disorder (OUD). By integrating with the clinician-facing application, the patient tool enriches understanding of the complex care requirements and outcomes of high-need patients.

PURPOSE 
This project aimed to develop additional resources for patient use and expand upon the capabilities of the first eCare Plan application by:

  • Creating a Fast Healthcare Interoperability Resources (FHIR®)-based mobile eCare Plan software application specifically for patients. 
  • Building upon the eCare Plan 1.0 Implementation Guide for the clinician-facing application by incorporating patient-facing components and considerations. 
  • Retooling the patient-facing eCare Plan application and Implementation Guide to address feedback from pilot implementation and integrating findings. 
  • Balloting the revised Implementation Guide with Health Level 7 (HL7®) to increase uptake and long-term use. 
  • Implementing and evaluating the patient-facing eCare Plan software application in clinical settings in patients living with MCC, including CKD, assessing the feasibility and usability of the application in collecting data across clinical and research settings using FHIR.

KEY IMPACTS: 
Improving access and use of data: Patient-facing eCare Plan application 
The patient-facing eCare Plan mobile application can be used to support patient-centered care coordination and planning for patients living with MCC (CKD, CVD, diabetes, and/or chronic pain with or without OUD). The data can be used to identify and achieve individuals’ health and wellness goals and be aggregated to reduce missingness and improve quality of point-of-care data for use in pragmatic research.

Enhanced analytic resources: MCC eCare Plan Implementation Guide 
The project developed a FHIR Implementation Guide to support implementation of the eCare Plan applications (clinician- and patient-facing) in practice.

PUBLICATIONS: 
Patient-facing eCare Plan Application. The free, open-source patient-facing eCare Plan application for use in MCC populations is available on GitHub.

MCC eCare Plan Implementation Guide. The FHIR Implementation Guide covers the clinician-facing and patient-facing eCare Plan applications and defines the FHIR R4 profiles, structures, extensions, transactions, and value sets needed to represent, query for, and exchange eCare Plan information.

Project Final Report. The purpose of this project was to develop and test a suite of electronic Care Plan (eCP) tools for adults with multiple chronic conditions (MCC), including an eCP implementation guide specifying data standards and value sets for key use case conditions and two open-source eCP apps (one for patients and one for clinicians). This joint initiative supported the work to develop and test these apps, which are intended to facilitate aggregation and sharing of critical patient-centered data across home-, community-, clinic-, and research-based settings by extracting data from point-of-care health systems and allowing transfer of those data across settings.