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Safeguarding Medically Underserved Populations in EHR-Based Research (Rebecca Hubbard, Dec. 2, 2024)

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Title: Safeguarding Medically Underserved Populations in EHR-Based Research
Presenter: Rebecca Hubbard, Carl Kawaja and Wendy Holcombe Professor of Public Health and Professor of Biostatistics and Data Science at Brown University
Abstract: Data are captured in electronic health records (EHRs) as a direct result of patient interactions with the healthcare system. Consequently, EHR data for patients with more healthcare utilization tend to be captured more frequently and provide more detail about the patient’s health. This connection between patterns of healthcare utilization and data quantity and quality, termed informed presence, violates the common statistical assumption of independence between observation and outcome processes. This is particularly problematic for historically marginalized populations and other groups experiencing barriers to healthcare. Limited data availability has the potential to increase bias, imprecision and algorithmic unfairness in EHR-based research results for these medically underserved groups. In this presentation, I will discuss the roots of informed presence bias in EHR data and illustrate examples of informed presence bias using real-world EHR data on childhood mortality and breast cancer outcomes. I will quantify the magnitude of bias resulting from alternative patterns of dependence between outcome and exposure data capture and healthcare utilization intensity and demonstrate several solutions to this problem. While EHR data can be used to accelerate precision medicine, achieving this goal while also safeguarding equity for underserved populations requires careful attention to data provenance and analytic methods.
Bio: Dr. Hubbard is the Carl Kawaja and Wendy Holcombe Professor of Public Health and Professor of Biostatistics and Data Science at Brown University. Her research focuses on development and application of statistical methods for studies using data from electronic health records (EHR) and medical claims, including issues of data availability and data quality, and has been applied to studies across a range of application areas including oncology and pharmacoepidemiology. She is a Fellow of the ASA and Co-Editor of the journal Biostatistics.
Presenter: Rebecca Hubbard, Carl Kawaja and Wendy Holcombe Professor of Public Health and Professor of Biostatistics and Data Science at Brown University
Abstract: Data are captured in electronic health records (EHRs) as a direct result of patient interactions with the healthcare system. Consequently, EHR data for patients with more healthcare utilization tend to be captured more frequently and provide more detail about the patient’s health. This connection between patterns of healthcare utilization and data quantity and quality, termed informed presence, violates the common statistical assumption of independence between observation and outcome processes. This is particularly problematic for historically marginalized populations and other groups experiencing barriers to healthcare. Limited data availability has the potential to increase bias, imprecision and algorithmic unfairness in EHR-based research results for these medically underserved groups. In this presentation, I will discuss the roots of informed presence bias in EHR data and illustrate examples of informed presence bias using real-world EHR data on childhood mortality and breast cancer outcomes. I will quantify the magnitude of bias resulting from alternative patterns of dependence between outcome and exposure data capture and healthcare utilization intensity and demonstrate several solutions to this problem. While EHR data can be used to accelerate precision medicine, achieving this goal while also safeguarding equity for underserved populations requires careful attention to data provenance and analytic methods.
Bio: Dr. Hubbard is the Carl Kawaja and Wendy Holcombe Professor of Public Health and Professor of Biostatistics and Data Science at Brown University. Her research focuses on development and application of statistical methods for studies using data from electronic health records (EHR) and medical claims, including issues of data availability and data quality, and has been applied to studies across a range of application areas including oncology and pharmacoepidemiology. She is a Fellow of the ASA and Co-Editor of the journal Biostatistics.