Characterization of a Large-Scale Real-World Data Source: Impact of Linking Closed Claims With Electronic Health Record Data

Author(s)

Amanda M. Moore, PharmD, PhD, Marley Boyd, Jr., MS, Steve Sison, MS, E Susan Amirian, PhD, Jeffrey S. Brown, PhD.
TriNetX, Cambridge, MA, USA.
OBJECTIVES: This study aimed to characterize the TriNetX Linked EHR + Claims network and describe how linked claims data may fill information gaps in EHR-only data sources.
METHODS: TriNetX Dataworks (DW)-USA is a federated EHR-only research network of de-identified EHR data sourced directly from 71 healthcare organizations. Within DW-USA, the Linked EHR + Claims network includes a subset of patients who have been tokenized and have linked closed claims and mortality data in addition to EHRs. As a use case, patients with a diagnosis of sickle cell disease (SCD) from 1/1/2022 to 12/31/2024 (index date) were described in both networks. Patients must have had ≥1 encounter ≥1 year prior to index (both networks) and continuous enrollment in the year prior to index (Linked only).
RESULTS: As of June 2025, the Linked and DW-USA networks included ≥17 million and ≥125 million patients, respectively. Among patients with SCD in Linked (n=9,940) and DW-USA (n=35,909), mean (SD) age (34[17] v. 33[20] years), sex (58.2 v. 57.2% female), and ethnicity (4.2 v. 4.2% Hispanic/Latino) were similar between networks. A lower proportion of patients in Linked were Black (70.7 v. 83.8%). The mean (SD) hemoglobin in the follow-up period was similar between the Linked and DW-USA groups (10[2.33] v. 10[2.22] g/dL), as was receipt of blood transfusions (14.1 v. 12.9%). A higher proportion of healthcare resource utilization (HCRU) capture was noted in Linked, including emergency department encounters (77.9 v. 61.0%).
CONCLUSIONS: Using SCD as an example use case, the subset of Linked patients were noted to be similar to the source DW-USA population, particularly in regard to demographics and disease severity (based on blood counts and transfusions). While the Linked cohort includes less patients than the EHR-only cohort, linking closed claims improved longitudinal data capture and data continuity while maintaining data granularity.

Conference/Value in Health Info

2025-11, ISPOR Europe 2025, Glasgow, Scotland

Value in Health, Volume 28, Issue S2

Code

RWD31

Topic

Real World Data & Information Systems

Topic Subcategory

Distributed Data & Research Networks

Disease

Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)

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