About the eCare Plan Joint NIH/NIDDK AHRQ Project

  • Joint initiative with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Agency for Healthcare Research and Quality (AHRQ), and the Assistant Secretary for Planning and Evaluation (ASPE).
  • Goal is to build data capacity for conducting pragmatic, patient-centered outcomes research (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 point-of-care health systems and allowing transfer of that data cross settings...
  • E-care plans are IT-enabled tools that support seamless care coordination, communication and collaboration among members of the care team (patients, caregivers and providers) to address the full spectrum of a patient’s needs across all settings and over time. The eCare plan will be used by clinical practices and health systems.
  • The eCare plan will be developed as an open source application designed to integrate with electronic health records (EHR) and other health IT systems that can be used by clinicians and researchers to compile, review, update and exchange critical patient health data and treatment plans.
  • 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).
  • More than 25% of Americans have multiple chronic conditions (MCC), accounting for more than 65% of U.S. health care spending. 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. Therefore, data aggregation is particularly important and challenging for people with MCC, who undergo frequent care transitions and require support from a variety of providers across multiple settings, inhibiting PCOR efforts to implement and evaluate much needed, innovative models of care delivery for these complex, high need, high cost patients.
  • These challenges will increasingly strain the U.S. health system, with the aging of the US population. Projections suggest numbers of adults aged 65 and older will more than double and numbers of those aged 85 and older will triple by 2050.
  • Lack of interoperability and exchange of data across point-of-care health information technology (IT) systems creates barriers to pragmatic, patient-centered outcomes research, 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.
  • This initiative will build from existing resources including a consensus-based eCare plan data element and standards set (DESS) for chronic kidney disease (CKD) that was developed by a NIDDK working group and aligns with requirements of the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) as part of the Promoting Interoperability programs. The CKD DESS is ready for implementation and pilot testing.


  • Sharing of all project documents, information, design, specs, etc.
  • Online forum / discussion groups
  • Private spaces to collaborate securely) and a public space (to share info with public)

Go to the eCare Plan Confluence Site.

Project Management

  • Assign and manage tasks
  • Track status and deliverables

Go to the eCare Plan JIRA Site.