The Office of the National Coordinator for Health Information Technology (ONC) has funded a project that leverages Fast Healthcare Interoperability Resources (FHIR) to simplify the clinical data registry population and improve care decisions. By using FHIR, over 40% of clinical registry data can be extracted, reducing processing times and submission delays. The project focuses on enhancing the National Cardiovascular Data Registry (NCDR) through standardized data elements and the development of an FHIR Implementation Guide (IG) to streamline data extraction and submission processes for improved sharing and utilization of clinical data.
The Office of the National Coordinator for Health Information Technology (ONC) has unveiled a promising approach for acquiring clinical registry data by leveraging Fast Healthcare Interoperability Resources (FHIR). This method shows potential for reducing processing times and improving submission delays, addressing the challenges associated with data collection for clinical data registries.
In the United States, only about 46 percent of non-federal acute care hospitals participate in clinical data registries due to the daunting nature of data collection. However, a solution may be on the horizon.
Under the auspices of the ONC’s Leading Edge Acceleration Projects (LEAP), a project has been funded to simplify the historically complicated task of populating clinical registries and utilizing the data to enhance care decisions. Clinical data registries serve as vital repositories of patient health information and treatment details, focusing on specific conditions to enable healthcare providers to analyze treatment effectiveness across diverse patient profiles. By leveraging these registries, hospitals, and private practices can improve the quality of care provided to patients.
However, the process of compiling comprehensive clinical registries has long been beset by challenges. Gathering all the required data to complete a registry form is a complex task, involving data collection from various sources such as electronic health records (EHRs), emergency medical services systems, or legacy systems without EHR connectivity. Additionally, data may need to be collected from multiple facilities or care settings to create a comprehensive patient overview. The existence of disconnected systems often necessitates laborious manual data extraction from multiple sources. Furthermore, discussions with clinical teams are often required to interpret and derive supplementary data, further complicating the process. After completing the registration forms, submissions undergo rigorous validation against unique data rules established by the registry.
To address these challenges, ONC presented a case study conducted by the Chesapeake Regional Information System for Our Patients (CRISP) in collaboration with the American College of Cardiology (ACC). The joint project, titled “Development and Testing of Data Sharing Functionality for Health Systems Participating in National Cardiovascular Disease Registries,” aimed to enhance the interoperability and efficiency of clinical data management. The focus was on the CathPCI Registry, which stores crucial information on cardiac disease, including treatments, outcomes, demographics, patient history, and risk factors. The project aimed to streamline data integration by mapping the registry’s proprietary data elements to widely recognized standards like SNOMED CT and LOINC, effectively addressing any mapping challenges encountered. Moreover, the potential of using FHIR to effortlessly extract and submit registry data was explored. CRISP successfully demonstrated data extraction from EHRs and submission to the CathPCI Registry during the January 2023 HL7 FHIR Connectathon using a proof-of-concept application.
James E. Tcheng, a cardiologist at Duke University School of Medicine and an informatics advisor to the ACC, led efforts to standardize the National Cardiovascular Data Registry (NCDR) using universal standards. Tcheng reported significant progress, stating that over 40 percent of clinical registry data could be extracted using FHIR, although complete extraction has not been achieved yet. This innovative endeavor holds tremendous potential for advancing patient care and research in cardiovascular health.
The use of FHIR to alleviate the challenges of registry completion can lead to reduced processing times, less intervention for registry documentation, minimized submission delays, and improved data quality, according to Anmer Ayala, an ONC official. Consequently, clinicians can spend less time gathering information and more time utilizing it to make informed clinical decisions and support patient care.
In addition to the project’s achievements, CRISP and ACC have collaboratively developed the Protocols for Clinical Registry Extraction and Data Submission (CREDS) FHIR Implementation Guide (IG). This groundbreaking guide aims to provide a scalable solution for hospitals, health information exchanges (HIEs), and other contributing organizations involved in the National Cardiovascular Data Registry (NCDR) and other registries. Expected to be published in the fall of 2023, this implementation guide aims to streamline data extraction and submission processes, revolutionizing the sharing and utilization of clinical data.
