Creation of a data commons for substance misuse related health research through privacy-preserving patient record linkage between hospitals and state agencies

Majid Afshar; Madeline Oguss; Thomas A Callaci; Timothy Gruenloh; Preeti Gupta; Claire Sun; Askar Safipour Afshar; Joseph Cavanaugh; Matthew M Churpek; Edwin Nyakoe-Nyasani; Huong Nguyen-Hilfiger; Ryan Westergaard; Elizabeth Salisbury-Afshar; Megan Gussick; Brian Patterson; Claire Manneh; Jomol Mathew; Anoop Mayampurath

doi:10.1093/jamiaopen/ooad092

Creation of a data commons for substance misuse related health research through privacy-preserving patient record linkage between hospitals and state agencies

JAMIA Open. 2023 Nov 2;6(4):ooad092. doi: 10.1093/jamiaopen/ooad092. eCollection 2023 Dec.

Authors

Majid Afshar¹, Madeline Oguss¹, Thomas A Callaci¹, Timothy Gruenloh¹, Preeti Gupta², Claire Sun¹, Askar Safipour Afshar¹, Joseph Cavanaugh¹, Matthew M Churpek¹, Edwin Nyakoe-Nyasani³, Huong Nguyen-Hilfiger³, Ryan Westergaard^{1

3}, Elizabeth Salisbury-Afshar^{1

3}, Megan Gussick¹, Brian Patterson¹, Claire Manneh⁴, Jomol Mathew¹, Anoop Mayampurath¹

Affiliations

¹ School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI 53706, United States.
² Division of Pulmonary and Critical Care, University of Illinois-Chicago, Chicago, IL 60607, United States.
³ State of Wisconsin Department of Health Services, Madison, WI 53703, United States.
⁴ Datavant Incorporated, San Francisco, CA 94104, United States.

Abstract

Objectives: Substance misuse is a complex and heterogeneous set of conditions associated with high mortality and regional/demographic variations. Existing data systems are siloed and have been ineffective in curtailing the substance misuse epidemic. Therefore, we aimed to build a novel informatics platform, the Substance Misuse Data Commons (SMDC), by integrating multiple data modalities to provide a unified record of information crucial to improving outcomes in substance misuse patients.

Materials and methods: The SMDC was created by linking electronic health record (EHR) data from adult cases of substance (alcohol, opioid, nonopioid drug) misuse at the University of Wisconsin hospitals to socioeconomic and state agency data. To ensure private and secure data exchange, Privacy-Preserving Record Linkage (PPRL) and Honest Broker services were utilized. The overlap in mortality reporting among the EHR, state Vital Statistics, and a commercial national data source was assessed.

Results: The SMDC included data from 36 522 patients experiencing 62 594 healthcare encounters. Over half of patients were linked to the statewide ambulance database and prescription drug monitoring program. Chronic diseases accounted for most underlying causes of death, while drug-related overdoses constituted 8%. Our analysis of mortality revealed a 49.1% overlap across the 3 data sources. Nonoverlapping deaths were associated with poor socioeconomic indicators.

Discussion: Through PPRL, the SMDC enabled the longitudinal integration of multimodal data. Combining death data from local, state, and national sources enhanced mortality tracking and exposed disparities.

Conclusion: The SMDC provides a comprehensive resource for clinical providers and policymakers to inform interventions targeting substance misuse-related hospitalizations, overdoses, and death.

Keywords: alcohol; data commons; health information exchange; opioids; substance abuse.

Abstract

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