Electronic health record (EHR) systems have changed the practice of medicine in myriad and profound ways over the past 10-15 years, and it is clear that they are here to stay. Although EHRs excel at data aggregation, they often lack clarity in clinical insights, instead primarily focusing on administrative aspects. An important new initiative from the ACR, RheumCode, offers a solution to this problem.
“In broad strokes, RheumCode wants to rewrite our knowledge of rheumatology in a language that EHR systems can understand,” explains Thomas Grader-Beck, MD, co-chair of RheumCode and associate professor of Clinical Medicine, Rheumatology Division, Johns Hopkins School of Medicine, Baltimore, Md. “EHR systems were primarily an initiative to simplify administrative billing purposes, so we know all about the financial aspects of patients, but we don’t know the clinical aspects equally well.”
“Further, even though EHR systems have made huge strides in aggregating data, these data are often poorly organized or even incomplete,” adds Meera Subash, MD, co-chair of RheumCode and assistant professor, Department of Clinical and Health Informatics, University of Texas, Houston. “We as healthcare providers have to assemble the pieces rapidly to provide a care plan for the patient who is in front of us. RheumCode aims to standardize key data elements or pieces of a patient’s healthcare history that are essential for continuing high-quality rheumatology care.”
Translating Data
When working with EHRs, clinicians and researchers must deal with different types of data. “Structured data” includes clearly defined elements, such as joint counts, in which specific numeric data are recorded with a clear type and definition. “Unstructured data” comprises free-text notes, imaging results and pathology reports that lack standardized formatting. One of the main goals of RheumCode is to define structured data elements, while recognizing that unstructured data can enhance these fields, potentially with the aid of artificial intelligence (AI).
However, the lack of consistency in data structures has made it difficult to compare patient data across systems. RheumCode aims to create a common language to define key data elements for rheumatology. A standardized way to represent rheumatology data across different EHR systems will facilitate improved patient outcomes and quality of care.
One expectation of RheumCode is that it will help establish parameters for treatment goals, such as “treat to target,” by defining the necessary data fields and structures for effective data collection and use within EHRs. In the long term, RheumCode may enable EHR systems to implement standardized pathways for tracking patient treatment effectively, thereby enhancing data accessibility and usability and supporting better clinical decision making.
“The model of creating structured data elements in a standardized format for EHRs has already been leveraged in the fields of cardiology and oncology. We are hoping to put rheumatology at the forefront of medicine with the use of this format and tool,” says Dr. Subash. “Imagine being able to compare similar patients in your clinic, or picture smoothly assuming care for a newly referred patient with all the data necessary to continue treatment—no faxes or calls to outside clinics required.”
The Oncology Model
The importance of RheumCode has both legislative context and technical precedent. The 21st Century Cures Act mandates improved patient accessibility to EHR data while ensuring patient privacy. The Fast Healthcare Interoperability Resources (FHIR) provides a modern framework for managing both structured and unstructured medical data in EHRs. Initially introduced in 2012 and now in its fourth iteration, FHIR is a widely used, standardized set of rules for representing and exchanging data among EHRs.
As a model in this area, RheumCode can look to an oncology initiative called mCode, which provides a structured approach to data standardization using FHIR. The successful implementation of mCode has highlighted the importance of “use cases” in creating relevant data structures. Other medical specialties, including cardiology and radiation oncology, are now developing similar data standards, a process that RheumCode plans to emulate.
Steps Forward
The RheumCode development team is taking a stepwise approach in moving forward with this initiative. The first step is to identify specific use cases for the tool to focus their development efforts. The team has defined some uses, including monitoring osteoporosis therapy and managing DMARD therapy, and is collecting input from the community about which use cases they would find most relevant for their own practices.
The next steps will be to define a RheumCode vocabulary and develop an implementation guide, detailing both essential and optional data elements. This guide will help standardize how data are collected across EHR systems.
The team also hopes to launch pilot projects with EHR systems, such as EPIC, to test the effectiveness of the developed tools and gather meaningful data. EPIC is generally open to pilot projects led by specialists and typically provides the necessary data elements to support the development of new tools that can be customized by individual sites.
The goal is to create a package that other institutions can use for their own pilot projects. Successful projects can demonstrate value and attract interest from other clinicians and potential investors, such as pharmaceutical companies. The RheumCode team is also exploring other funding options, such as grants from the National Institutes of Health, to support tool development and cover consulting costs.
Make an Impact
RheumCode is poised to be a success, but it needs your help.
“First, community input is incredibly important to identifying relevant use cases and is key to increasing the technical expertise in our team,” Dr. Subash notes. “We want to hear from the rheumatology community about specific use cases that could guide their efforts.”
“We also need to hear from individuals who are knowledgeable about EHR systems other than EPIC, as those insights affect the adaptability and content changes that could be beneficial for broader implementation,” Dr. Grader-Beck adds.
The RheumCode teams seeks a collaborative and comprehensive approach to developing the tool. We encourage the feedback and participation of anyone interested in the project, particularly those who have relevant experience, such as familiarity with FHIR, software development and systems design, quality improvement or customization of EHRs.
If you are interested in getting involved in RheumCode, contact [email protected].
Jason Liebowitz, MD, is an assistant professor of medicine in the Division of Rheumatology at Columbia University Vagelos College of Physicians and Surgeons, New York.
Allison Plitman, MPA, is the senior communications specialist for the ACR’s RISE registry.
Thomas Grader-Beck, MD, is an associate professor of medicine-rheumatology and clinical informaticist at Johns Hopkins University School of Medicine. He serves as the co-lead for the RheumCode workgroup and is a member of the ACR’s Registries and Health Information Technologies (RHIT) Committee.
Meera Subash, MD, is a rheumatologist and informatician at the University of Texas Health Science Center at Houston. She serves as the co-lead for RheumCode and is a member of the ACR’s Registries and Health Information Technologies (RHIT) Committee.
Tom Tack is Sr. Director, Registry at the ACR and serves as the staff liaison for the RheumCode workgroup for the ACR’s Registries and Health Information Technologies (RHIT) Committee.
