Creating both a personalized and “big picture” snapshot of substance use disorder and its impact on our state requires a lot of data, which is often held by multiple organizations and data base sets.
The Indiana Addictions Data Commons (IADC), developed and managed through Regenstrief Institute and part of Indiana University's Responding to the Addictions Crisis Grand Challenge, is working to address that issue by providing researchers and organizations access to both clinical and non-clinical datasets to support addictions-related work.
The Marion County Public Health Department began a partnership in fall 2019 with the IADC for its Overdose Data to Action plan, which examines risk and protective factors related to opioid use disorder and overdoses to help inform the health department’s prevention efforts which will then be shared with state partners.
"To truly address this issue, we need to get a big picture view of how all the pieces relate to one another," said Angela Shamblin, epidemiology manager at Marion County Public Health Department and the Overdose Data to Action grant coordinator. "The Indiana Addictions Data Commons will allow us to follow people struggling with substance use disorder across a wider span of time and across the various medical interventions they may encounter, something that would not have been possible otherwise."
The Indiana Addictions Data Commons provides rapid access to critical information by establishing data-sharing agreements among several leading Indiana organizations and preparing this information to be analyzed through powerful computing methods. This work involves making many diverse and distinct datasets compatible with one another. Data requests are evaluated through a robust governance process which ensures the necessary provisions are in place to protect patient privacy.
For the Marion County Public Health Department's Overdose Data to Action program, Regenstrief will provide a dataset that will serve as the primary tool for the initiative’s surveillance and prevention activities and will allow Regenstrief to leverage both clinical and non-clinical data to identify predictors of drug overdose as well as opportunities for intervention. The dataset will also be an integral part of prevention activity evaluation, helping to improve substance use disorder outreach, education and intervention efforts.
The dataset will include individually-linked records from a variety of sources including vital statistics, electronic health records, emergency medical service (EMS) runs, and social determinants, information gathered from Marion County, Regenstrief, which maintains information on more than 13 million patients across more than 100 hospitals, and Indiana’s Management Performance Hub, which collects information on public services and their recipients and outcomes.
Dan Hood, project manager at Regenstrief, said when it comes to gathering data, there is no "one size fits all" approach. The role of the Indiana Addictions Data Commons, he said, is working directly with collaborators to understand their data needs in order to create a comprehensive dataset that meets their needs.
"In supporting addictions-related data needs, our team has recognized the need for access to data beyond just the clinical world," Hood said. "Social determinants of health data such as education, income, neighborhood characteristics and others are also essential to evaluating and studying this public health crisis. Our ability to lower the barriers to accessing these types of data among organizations around the state is key."
The Responding to the Addictions Crisis Grand Challenge initiative engages a broad array of IU's world-class faculty, as well as IU's business, nonprofit and government partners. Working together, the groups are contributing to an initiative to implement a comprehensive plan to reduce deaths from addiction, ease the burden of drug addiction on Hoosier communities and improve health and economic outcomes. This initiative is one of the nation's largest and most comprehensive state-based responses to the opioid addiction crisis -- and the largest led by a university.
