Establishing a public health surveillance system for the opioid crisis: The experience of the HEALing Communities Study

Introduction: Efforts to reduce opioid overdose deaths in the United States have been stymied by the lack of timely and standardized population-level data for local, state, and national levels. The U.S. has a strong national need for linking opioid and other drug overdose surveillance data to service utilization data for overdose prevention and treatment to inform resource allocation and response planning. Methods: We provide insight on the challenges of identifying, obtaining, and harmonizing administrative outcome data across four states using the collective experience from the HEALing Communities Study to test a community-engaged, data-driven, population-level intervention to reduce opioid overdose deaths. We also discuss the opportunities that arose from those challenges, as well as the relationships across state agencies that were strengthened. Results: Challenges experienced by the research sites on obtaining administrative outcome data included issues around who owned the data, what level of data access and use was allowed, and difficulties related to the timeliness of the data, ability to harmonize the data elements, and lack of demographic data available for stratification. Opportunities arose from these challenges whereby research sites developed new partnerships with state agencies (including a key governmental official in the state administration), provided an additional layer of quality control for these data, and facilitated democratizing data so local communities could access them. Conclusions: The overall lessons show the importance of adapting to external changes and maintaining strong partnerships to pursue shared goals. The HCS serves as an exemplar of how local and state jurisdictions can create comprehensive data systems for monitoring and responding to the opioid overdose epidemic.