FHIR Implementation Guide for Stroke: A dual focus on the patient's clinical pathway and value-based healthcare.

ABSTRACT

BACKGROUND: Stroke management requires a coordinated strategy, adhering to clinical pathways (CP) and value-based healthcare (VBHC) principles from onset to rehabilitation. However, the discrepancies between these pathways and actual patient experiences highlight the need for ongoing monitoring and addressing interoperability issues across multiple institutions in stroke care. To address this, the Fast Healthcare Interoperability Resource (FHIR) Implementation Guide (IG) standardizes the information exchange among these systems, considering a specific context of use. OBJECTIVE: Develop an FHIR IG for stroke care rooted in established stroke CP and VBHC principles. METHOD: We represented the stroke patient journey by considering the core stroke CP, the International Consortium for Health Outcomes Measurement (ICHOM) dataset for stroke, and a Brazilian case study using the Business Process Model and Notation (BPMN). Next, we developed a data dictionary that aligns variables with existing FHIR resources and adapts profiling from the Brazilian National Health Data Network (BNHDN). RESULTS: Our BPMN model encompassed three critical phases that represent the entire patient journey from symptom onset to rehabilitation. The stroke data dictionary included 81 variables, which were expressed as questionnaires, profiles, and extensions. The FHIR IG comprised nine pages Home, Stroke-CP, Data Dictionary, FHIR, ICHOM, Artifacts, Examples, Downloads, and Security. We developed 96 artifacts, including 7 questionnaires, 27 profiles with corresponding example instances, 3 extensions, 18 value sets, and 14 code systems pertinent to ICHOM outcome measures. CONCLUSION: The FHIR IG for stroke in this study represents a significant advancement in healthcare interoperability, streamlining the tracking of patient outcomes for quality enhancement, facilitating informed treatment choices, and enabling the development of dashboards to promote collaborative excellence in patient care.