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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
Agency
  • Centers for Disease Control and Prevention (CDC)
Start Date
  • 4/15/2019
OS-PCORTF Strategic Plan Alignment
  • Primary Goal: Goal 3: Technology Solutions to Advance Research 
     

 

STATUS: Completed Project

BACKGROUND

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 Assistant Secretary for Technology Policy (ASTP) 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 US Core Data for Interoperability (USCDI) 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..

PURPOSE 
This project aimed 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 by: 

  • Defining three diverse use cases (hepatitis C [HCV], cancer reporting, and health care surveys) and research questions relevant to end-users. 
  • Using 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. 
  • Setting 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. 
  • Implementing the application in a real-world pilot for at least one use case (HCV) in both clinical research and public health surveillance contexts. 
  • Evaluating the HCV use case implementation to measure improvements in the timeliness and completeness of data reported for research and public health; and 
  • Developing a plan for broad use and long-term sustainability of the application, including publishing the application as open-source software.

KEY IMPACTS 
Improved access and use of data: Implementation guide to improve the availability of clinical EHR data for research and public health 
This project developed a Reference Architecture (RA) HL7 FHIR Implementation Guide and Substitutable Medical Apps, Reusable Technologies on Fast Healthcare Interoperability Resources application (SMART-on-FHIR® app), the Health Data Exchange App (HDEA), for a real-time data exchange system (MedMorph) to improve the availability of clinical EHR data for research and public health in four use cases that represent infectious disease, chronic disease, healthcare services, and research: HCV, cancer, healthcare surveys, and research data exchange.

Coordinating stakeholder engagement: Detailed blueprint of engaging stakeholders across research and public health  
This project team developed a detailed blueprint describing how to leverage FHIR for aligned research and public health access to clinical data for automated data exchange. A technical expert panel of more than 100 members were engaged to model representative use cases, develop implementation guides (architectural and content), align with existing efforts in the FHIR community, and demonstrate the RA in research and public health uses

PUBLICATIONS 
Health Data Exchange App (HDEA). This SMART-on-FHIR app supports electronic case reporting and the availability of clinical EHR data for research and public health in four use cases: HCV, cancer, healthcare surveys, and research data exchange.

FHIR MedMorph Implementation Guide. This repository contains the RA HL7 Implementation Guide and MedMorph analytic codes.

Blueprint for Aligned Data Exchange for Research and Public Health. This publication describes how FHIR and related standards can be leveraged for automated data exchange of clinical data to align research and public health needs. 

Initial Real-World Pilot of the MedMorph Reference Architecture: Hepatitis C Surveillance and Research. This publication describes the real-world pilot of the MedMorph Reference Architecture for automated exchange of HCV-related data for public health surveillance and research using FHIR.