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Are Aggregated Electronic Health Record Datasets Good for Research?
Neal D Goldstein1,2, Brianne Olivieri-Mui3,4, Igor Burstyn5
1Department of Epidemiology and Biostatistics, Dornsife School of Public Health, Drexel University, Philadelphia, USA. ng338@drexel.edu.
Aggregated electronic health record (EHR) data from multiple institutions present unique challenges and benefits. This study outlines best practices for managing these large-scale datasets for research.
Area of Science:
- Health Informatics
- Biomedical Data Science
- Real-World Data Research
Background:
- Large-scale electronic health record (EHR) data platforms are increasingly pooling information across multiple healthcare organizations.
- Platforms like NIH's All of Us, TriNetX, and Epic Cosmos exemplify this trend.
- Aggregating EHR data across disparate systems introduces unique challenges beyond single-entity data analysis.
Purpose of the Study:
- Define aggregated EHR data and differentiate it from other real-world data sources.
- Highlight the specific benefits and challenges associated with working with aggregated EHR data.
- Provide "good practices" to mitigate identified challenges and discuss the appropriateness of data pooling.
Main Methods:
- Literature review and conceptual analysis of aggregated EHR data platforms.
- Comparative analysis of aggregated EHR data versus other real-world data sources.
- Identification and synthesis of best practices for managing aggregated EHR data.
Main Results:
- Aggregated EHR data offers unique advantages for large-scale research but requires careful consideration of specific challenges.
- Key challenges include data heterogeneity, standardization issues, and privacy concerns across multiple institutions.
- Proposed "good practices" aim to address these challenges, enhancing data quality and research validity.
Conclusions:
- Pooling EHR data across disparate healthcare systems is feasible but necessitates strategic approaches to overcome inherent complexities.
- Adherence to best practices is crucial for maximizing the benefits of aggregated EHR data while minimizing risks.
- Further discussion is needed on the optimal conditions and methodologies for pooling such data.
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