The benefits of inter-jurisdictional data sharing have been touted as a hallmark of BioSense 2.0, a cloud-based computing platform for syndromic surveillance. A key feature of the BioSense 2.0 platform is the ability to share data across jurisdictions with a standardized interface. Jurisdictions can easily share their data with others by selecting data sharing partners from a list of participating jurisdictions. Technically the process is simple, however there are several other considerations (discussed herein) to be taken into account before and after deciding to share data with the larger BioSense community. This green paper is a continuation of several discussions stemming from a workshop hosted by the International Society of Disease Surveillance (ISDS) in collaboration with the Association of State and Territorial Health Officials (ASTHO), with the support of the U.S. Centers for Disease Control and Prevention (CDC). This initial workshop brought together epidemiologists from city, county and state public health departments primarily located in the US Health and Human Services Region 5. The workshop documented (Appendix 1) a variety of known benefits to data sharing, including:
• Cross-border case-finding
• Identifying patterns or trends (local, state, regional, federal)
• Emergency preparedness planning and partner notification
• Estimating an end to an event, based on declining trends in neighboring areas
• Mutual aid
• Ensuring national situational awareness for federal partners
• Hypothesis generation and testing
• Retrospective analysis to improve public health practice Members of this workshop composed an open letter to the BioSense Governance Group (Appendix 2) reporting on the top priorities and suggestions for functionality and documentation that would support data sharing among regional partners. Several members of the workshop coordinated a roundtable discussion at the ISDS 2013 annual conference (Appendix 3).
The annual ISDS conference attracts members across disciplines including practical epidemiologists, statisticians, researchers, informaticians and academic scholars. The objective of the roundtable was to open the conversation to the wider surveillance community and find potential solutions to the three primary barriers to data sharing originally identified by the workshop: legal/ethical concerns; unknown quality of the shared data; and the need for more granular (user role-based) sharing.
Objective
The purpose of this paper is to summarize the general and breakout group discussions facilitated by the roundtable members. This paper does not make any specific policy recommendations, however, we intend for the feedback captured in this document to lead to improvements in the BioSense 2.0 platform and application. The goal is to increase meaningful inter-jurisdictional data sharing by identifying existing barriers and user-generated solutions.