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Blog
USCDI: How It May Benefit Patient Advocacy Organizations and Medical Societies
Jan 09, 2023
Accessing deidentified patient data from electronic health records (EHRs) has historically been challenging, and controlled by EHR vendors. The US 21st Century Cures Act (Cures Act) resulted in new regulations that fundamentally change how patient data is accessed and repurposed. In a major step forward, the United States Core Data for Interoperability (USCDI) aims to improve interoperability of various medical data systems and enable data exchange between stakeholders such as physicians, insurers, labs, registries, and patients themselves.
Below we take a look at the current interoperability environment, and considerations for advocacy groups and medical specialty societies that may want to work with an external partner in this area.
What is USCDI?
The USCDI provides standards for data creation and formatting, defining the data classes and elements that EHRs must be able to share – and creating a basic expectation that healthcare data can be exchanged freely and openly, via a non-proprietary mechanism.1 USCDI data elements represent individual concepts, such as medication, allergy, procedure, or health concern. These sets of health data must be expressed in Certified Health IT modules and made available for exchange using certain exchange standards, such as Fast Healthcare Interoperability Resources (FHIR) or Consolidated-Clinical Document Architecture (C-CDA).
USCDI focuses on core data requirements for patient data access and certain other exchange and interoperability uses. USCDI is “content exchange standard agnostic,” with no specification of how and to what extent its elements are included in FHIR or C-CDA.
While there remain differing viewpoints on the utility of the USCDI, release and adoption have significantly accelerated interoperability. Several attempts have been made to regulate the flow of health information for EHR integration, including the use of Health Level 7 (HL7) with FHIR. HL7 refers to the seventh level of the International Organization for Standardization (ISO) seven-layer communications model for Open Systems Interconnection (OSI). This is the application level, interfaces directly with and performs common application services for the application processes.
Complying With and Gaining Advantage from USCDI
Patient Advocacy Groups
Patient advocacy groups (PAGs) will likely benefit greatly from patient-mediated data access, where individuals are able to choose to share their data with PAGs, medical specialty society registries, researchers or others. Patient permission to share data, including patient-reported outcomes, can be granted through the provider’s portal, via a patient-facing mobile app or a direct request to the physician’s office. Integration vendors can achieve this sharing via FHIR APIs. This is likely to be particularly helpful in PAGs’ rare or ultra-rare disease registries, where medical centers may be reluctant to take on the work required to share data from one or a few patients.
Medical Specialty Societies
Medical specialty society (MSS) registries aim to examine performance metrics and quality data, and to provide feedback comparing healthcare organizations with national averages, or report to CMS on performance measures. Historically, it has been challenging for MSSs to obtain high quality data from institutions for these registries. With the advent of the USCDI and FHIR APIs, societies’ registries are benefiting from the ability to interface with health systems to gain access to data sources, with automation helping to minimize the effort required from site IT teams.
The United States Core Data for Interoperability (USCDI) will improve patient data access and interoperability of medical data systems, with free and open data exchange between healthcare stakeholders. While there remain limitations to this exchange at present, there is scope for significant advantage for both patient advocacy groups and medical specialty societies. By working with an experienced external partner, PAGs and MSSs alike can accelerate the achievement of these benefits to support the needs of their stakeholders.
Read more in our whitepaper: “Accelerating Interoperability with USCDI”