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

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. Substance misuse comprises a heterogeneous and complex set of conditions associated with high mortality and regional and demographic variation. Healthcare providers and public health agencies who design treatment and preventative interventions have focused primarily on fatal events. Recently, the Office of National Drug Control Policy recommended shifting focus to early warning signs-emergency department visits or hospitalizations-that lie on the path to fatality. To aid this transition, we constructed the Substance Misuse Data Commons (SMDC), a first-of-its-kind informatics platform that links hospital data from adult cases of substance (alcohol, opioid, nonopioid drug) misuse from a regional health system to census, national mortality, and state agency data. Our article describes our privacy-ensuring data-linking process and the characteristics of SMDC patients. Over half of the 36 522 SMDC patients had data from statewide ambulance and prescription drug databases. The majority of deaths were attributable to chronic diseases, more so than overdose deaths. There was a 49.1% overlap in death cases across the 3 mortality data sources, highlighting the value in our use of electronic health records, state vital records, and national death databases. With the SMDC, healthcare providers and policymakers may analyze a unified record of information that is useful for informing preventive strategies for both health systems and health departments.