HL7 FHIR-based tools and initiatives to support clinical research: a scoping review. (11th July 2022)

• Record Type: Journal Article
• Authors: Duda, Stephany N; Kennedy, Nan; Conway, Douglas; Cheng, Alex C; Nguyen, Viet; Zayas-Cabán, Teresa; Harris, Paul A
• Is Part Of: Journal of the American Medical Informatics Association. Volume 29:Number 9(2022)
• Page Start: 1642
• Page End: 1653
• Publication Date: 2022-07-11
• Subjects: fast healthcare interoperability resources (FHIR) -- health information interoperability -- data management -- health information management -- electronic health records; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocac105
• Languages: English
• ISSNs: 1067-5027

Abstract

Abstract: Objectives: The HL7 ® fast healthcare interoperability resources (FHIR ® ) specification has emerged as the leading interoperability standard for the exchange of healthcare data. We conducted a scoping review to identify trends and gaps in the use of FHIR for clinical research. Materials and methods: We reviewed published literature, federally funded project databases, application websites, and other sources to discover FHIR-based papers, projects, and tools (collectively, "FHIR projects") available to support clinical research activities. Results: Our search identified 203 different FHIR projects applicable to clinical research. Most were associated with preparations to conduct research, such as data mapping to and from FHIR formats ( n = 66, 32.5%) and managing ontologies with FHIR ( n = 30, 14.8%), or post-study data activities, such as sharing data using repositories or registries ( n = 24, 11.8%), general research data sharing ( n = 23, 11.3%), and management of genomic data ( n = 21, 10.3%). With the exception of phenotyping ( n = 19, 9.4%), fewer FHIR-based projects focused on needs within the clinical research process itself. Discussion: Funding and usage of FHIR-enabled solutions for research are expanding, but most projects appear focused on establishing data pipelines and linking clinical systems such as electronic health records, patient-facing data systems, and registries, possibly due to the relative newness of FHIR and the incentives for FHIR integration in health information systems. Fewer FHIR projects were associated with research-only activities. Conclusion: The FHIR standard is becoming an essential component of the clinical research enterprise. To develop FHIR's full potential for clinical research, funding and operational stakeholders should address gaps in FHIR-based research tools and methods.