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Making Electronic Health Record (EHR) Data More Available for Research and Public Health

Developing an Application and Reference Architecture Using Industry Standards and Technology to Improve the Availability of Clinical EHR Data
  • Centers for Disease Control and Prevention (CDC)
Start Date
  • 4/15/2019
  • Standardized Collection of Standardized Clinical Data


STATUS: Active Project


Interoperability of patient data remains challenging to achieve in real-world applications, especially those that do not involve direct patient care or payment. Real-time data exchange between health systems and research and public health is inconsistent and insufficient. Many patient-centered outcomes researchers and public health surveillance programs share a common challenge: they rely on clinical data that are frequently inaccessible and under-reported. As a result, they may be unable to answer critical questions that could lead to better, more patient-centered care--or to leverage patient-level data for public health action.

Similarly, lack of access to electronic health record (EHR) data can preclude innovative partnerships between providers and public health to advance patient outcomes. Patient-centered outcomes researchers and public health professionals need better ways to access data from different EHR systems without posing additional burden on health care providers. In recent years, the maturation of standards such as Fast Healthcare Interoperability Resources (FHIR), and the Office of the National Coordinator for Health IT (ONC) requirements for certification of health information technology (health IT) that underpin many EHRs, such as the Common Clinical Data Set (CCDS) and open application programming interfaces (APIs), have created a health IT environment that is ripe for developing scalable and extensible solutions to overcome interoperability challenges. The purpose of this project is to develop a reference architecture, processes, and an application to address some of the identified challenges using industry standards, supported by health IT certification requirements, designed for scalability and extensibility, and licensed as open source software.


The project has selected three diverse use cases (hepatitis C (HCV), cancer reporting, and health care surveys) to model and inform the design of the application. After development, the project team will fully test the application on an HCV use case to ensure it can extract data from multiple clinical organizations using different EHR platforms) using FHIR as the canonical data model. The goal is to leverage a common reporting framework to provide the data needed by researchers and public health officials to generate scientific evidence about a given health problem.

The project will focus on the following objectives

  • Define the use cases and research questions relevant to end-users.

  • Use existing health data and exchange standards to develop a scalable and extensible application for real-time data exchange between EHRs and research and public health systems.

  • Set up a contracting vehicle (statements of work, requests for proposal) to develop a collaborative group of available clinical, research, and public health organizations, and health IT vendors as a ready testbed for testing health IT tools.

  • Implement the application for at least one use case (HCV) in both clinical research and public health surveillance contexts.

  • Evaluate the HCV use case implementation to measure improvements in the timeliness and completeness of data reported for research and public health; and

  • Develop a plan for broad use and long-term sustainability of the application, including publishing the application as open source software.