Data Sharing

The DoD and VDH both maintain local ESSENCE installations to monitor the health status of their military and civilian populations, respectively, and submit syndromic surveillance data to the NSSP ESSENCE to foster data sharing and collaborative initiatives among public health entities. Military Treatment Facilities (MTFs), housed on DoD installations, provide healthcare to all service members and their beneficiaries stationed in the area. Service members and their beneficiaries represent a substantial portion of the local community and interact with the civilian population throughout daily activities. Sharing syndromic surveillance data between DoD and public health jurisdictions can provide public health situational awareness among both civilian and military populations to support disease surveillance. DoD and VDH engaged in a pilot project to develop processes and procedures for data sharing, data access, and communication with the aim they can serve as best practices for other jurisdictions seeking to share syndromic surveillance data with DoD.

Objective: This panel will focus on the experiences from the Department of Defense (DoD) and Virginia Department of Health (VDH) data sharing project using the National Syndromic Surveillance Program (NSSP) ESSENCE and will discuss lessons learned, challenges, and recommendations within the following areas: 1) data sharing authority, 2) coordination and implementation of data sharing with a focus on personnel, training, and managing access and 3) communication between local, state, and federal agencies.

Cross-jurisdictional sharing of public health syndrome data is useful for many reasons, among them to provide a larger regional or national view of activity and to determine if unusual activity observed in one jurisdiction is atypical. Considerable barriers to sharing of public health data exist, including maintaining control of potentially sensitive data and having informatics systems available to take and view data. The Distribute project [1,2] has successfully enabled cross-jurisdictional sharing of ILI syndrome data through a community of practice approach to facilitate control and trust, and a distributed informatics solution. The Gossamer system [3] incorporates methods used in several UW projects including Distribute. Gossamer has been designed in a modular fashion to be hosted using virtual or physical machines, including inside cloud environments. Two modules of the Gossamer system are designed for aggregate data sharing, and provide a subset of the Distribute functionality. The Distribute and Gossamer systems have been used for ad-hoc sharing in three different contexts; sharing of common ILI data for research into syndrome standardization, sharing syndromic data for specific events (2010 Olympics) and for pilot regional sharing of respiratory lab results. Two additional projects are underway to share specific syndromes of recent interest: alcohol related and heat related ED visits.

Objective

To demonstrate how rapid adhoc sharing of surveillance data can be achieved through informatics methods developed for the Distribute project.

The North Carolina Division of Public Health (NC DPH) has been collecting emergency department data in collaboration with the Carolina Center for Health Informatics in the UNC Department of Emergency Medicine since 1999. As of August 2011, there are 113 of 115 emergency departments sending data electronically at least once daily to NC DETECT. Data elements include disposition, initial vital signs, up to 11 ICD-9-CM final diagnosis codes, up to five external cause of injury codes (E-codes),as well as the arrival date and time, patient sex and age, patient zip and county, and chief complaint. As of January 2008, NC DETECT emergency department data covered 99% of the NC population and captures approximately 4.5 million ED visits each year. As a result, requests for data from researchers continue to increase. Use of the data for public health purposes is covered by the mandate requiring hospitals to submit their emergency department data to NC DPH.

Objective

To describe the process by which researchers request access to data sets of emergency department data from NC DETECT,the history of this process,and the resulting best practices and lessons learned.

The electronic surveillance system for the early notification of community-based epidemics (ESSENCE) is the web-based syndromic surveillance system utilized by DHMH. ESSENCE utilizes a secure, automated process for the transfer of data to the ESSENCE system. Data sources in the Maryland ESSENCE system include emergency department (ED) chief complaints, poison control center calls, over-the-counter (OTC) medication sales, and pharmaceutical transaction data (for certain classes of anti-bacterial and anti-viral medication). All data sources have statewide coverage and are captured daily in near real-time fashion. OIT developed a web based application in conjunction with OP&R to allow the epidemiologists involved in the ESSENCE program to monitor and audit the transfer of this data. The application allows the user to indicate whether or not each data file has been consumed into ESSENCE for any date of the year. The user can edit these daily entries at any time to update the status of the data that has been received. The user may also query the database by data source, date, and date range to generate a report. The database also contains contact information for technical and infection control staff at the hospitals that participate in the ESSENCE program. Finally, the application can also generate reports that detail which users have logged into ESSENCE, when the log-in occurred, and which pages within ESSENCE were visited.

Objective

To describe the application and process developed by the Maryland Department of Health and Mental Hygiene (DHMH) Office of Preparedness and Response (OP&R) and Office of Information Technology (OIT) for monitoring and auditing the transfer of syndromic surveillance data.

Collaborative relationships between academicians and public health practitioners are necessary to ensure that methodologies created in the research setting translate into practice. One barrier to forging these collaborations is restrictions on the sharing and availability of public health surveillance data; therefore, most academics with expertise in method development cannot access 'real world' surveillance data with which to evaluate their approaches. The ISDS Technical Conventions Committee was established in 2013 to facilitate and expedite the development, evaluation, and implementation of technical methods for public health surveillance. The purpose of the committee is to bridge a long-standing gap between technical challenges in public health practice and solution developers needing both understanding of these challenges and representative data.

Objective

The purpose of this panel is to facilitate the dissemination of surveillance-related use cases by public health practitioners with accompanying benchmark datasets to method developers. The panel will present practitioners' experiences with preparing patient-level emergency department data sets to accompany a use case submitted to the ISDS Technical Conventions Committee.