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

Building Data Capacity to Conduct Pragmatic, Patient Centered Outcomes Research by Developing an Interoperable Electronic (eCare) Plan
  • Agency for Health Research and Quality (AHRQ)
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Start Date
  • AHRQ - 4/15/2019
  • NIDDK - 4/8/2019
  • Use of Clinical Data for Research
  • Linking of Clinical and Other Data for Research

STATUS: Active Project


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. Pragmatic trials represent a cost-effective and efficient research approach, in which health information technology (health IT) systems such as electronic health records (EHRs) facilitate use of point-of-care data to enhance our understanding of the effectiveness of health interventions in real-world practice. However, lack of interoperability and exchange of data across EHRs 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.


This project will build data capacity to conduct pragmatic PCOR by developing an interoperable electronic care (eCare) plan to facilitate aggregation and sharing of critical patient-centered data across home-, community-, clinic- and research-based settings by extracting data from EHRs and exchanging that data across settings. The eCare plan will be an overarching, longitudinal blueprint of the prioritized health concerns, goals, interventions, and health status of an individual patient across all care settings where - and all health care team members through whom the patient receives care. The pilot eCare Plan tool developed for this project will be designed for use with patients who have chronic kidney disease (CKD), cardiovascular disease (CVD), diabetes, and/or pain with opioid use disorder (OUD).

The overall objectives of the project are to:

  • Expand an existing data element and standards set (DESS) focused on CKD to the following three co-morbid health conditions: CVD, OUD, and diabetes.

  • Develop an open-source, SMART on FHIR eCare plan application for people with MCC, as well as an accompanying HL7® FHIR® Implementation Guide (IG); test the pilot application and IG in populations with CKD.

  • Establish 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 available to enable search, access, sharing, and exchange of eCare plans.

  • Disseminate all project products through free, open source channels (e.g., federal government websites, open-source software exchanges such as GitHub, HL7® Confluence wiki).