The Added Value of Linking Real-World Data Sources

OBJECTIVES: This review aims to identify cases in which the integration of electronic health records (EHR) with diverse real-world data (RWD) sources, including claims data, physicians’ notes, and patient reported experience data, is recommended to build a more comprehensive patient journey.

METHODS: We reviewed published studies extracted from PubMed in the past five years and identified three cases where linkage of EHR with RWD sources should be considered as part of the design of a real-world study. We listed examples and benefits of each type of linkage.

RESULTS:

In the past 5 years, in addition to using EHR, 934 studies extracted further data from medical charts/notes, 1,575 studies ran surveys/questionnaires to collect additional patient-reported data, and 544 studies linked patients’ EHR to insurance claims data. Although the use of EHR allowed to establish and measure clear clinical outcomes, as they include granular clinical and laboratory data:

Case 1: Medical notes and charts provided researchers with an even higher degree of granular details compared to EHR alone, granting access to information about the actual clinical context, such as standardized assessments scales for patients’ motor functionality allowing to follow disease progression and symptoms intensity;

Case 2: Patient reported information allowed to complement EHR’s unknowns or incompleteness, such as, race, and patient experiences allowing the delivery of care to be both patient centric and evidence based; and

Case 3: Health insurance claims data allowed investigating economic burden of diseases including quantifying the use of the system, and the costs for this use, such as physician visits, which completes the humanistic burden information extracted from EHR.

CONCLUSIONS: Understanding the capabilities of linkage across RWD provides valuable opportunity to generate wider scope of real-world evidence, than using a single source separately, thus improving overall patient care.