Skip to main content

Data Sharing

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.

Referenced File
Submitted by uysz on

This letter was intended to establish a dialogue between surveillance professionals and the BioSense Governance Group. The particiapnts were interested in establishing data sharing relationships across jurisdictions utilizing BioSense. Within this letter are a number of recommendations for increasing the feasibility of this data sharing process in BioSense. Recommendations include: 1) increased documentation and additional tools; and 2) functionalities in the BioSense application.

Submitted by uysz on

BioSense 2.0 has become a platform for technical receipt and analysis of syndromic surveillance data for many jurisdictions nationwide, as well as a collaborative effort that has engaged a larger community of syndromic surveillance practitioners, Governance Group, and federal agencies and organizations. The potential longterm benefits of BioSense 2.0 for resource and data sharing have at times been overshadowed by the short-term limitations of the system and disconnected efforts among the CoP. In May 2014, representatives from 41 jurisdictions attended a 2-day, in-person meeting where four workgroups were formed to address on-boarding, data quality, data sharing and syndrome definition in an effort to advance changes that resonate with actual surveillance practice.

Objective

This roundtable will provide a forum for the syndromic surveillance Community of Practice (CoP) to learn about activities of the BioSense 2.0 User Group (BUG) workgroups that address priority issues in syndromic surveillance. It will be an opportunity to discuss key challenges faced by public health jurisdictions in the era of Meaningful Use and identify further needs and best practices in the areas of data quality, data sharing, onboarding, and developing syndrome definitions.

 

Submitted by Magou on

Anthrax is endemic and enzootic in Georgia with cases being registered since 1881 with over 2000 foci identified. Since 2005, 439 laboratory confirmed and 211 probable human cases and 190 laboratory confirmed animal cases have been registered. A case-control study performed in 2012 by the National Centre for Disease Control and Public Health (NCDC), National Food Agency (NFA) and the Field Epidemiology and Laboratory Training Program (FELTP) found the main transition routes for human cases are slaughtering diseased animals and handling raw meat without protective equipment.

Submitted by uysz on

Zoonotic diseases compose a large proportion of the disease burden faced by African countries (e.g. Ebola). A One Health approach to disease control has been embraced across the continent, yet public health and veterinary surveillance systems in most countries remained vertically isolated under separate Ministries. Data exchange, if it occurs, is ad hoc and informal.

Submitted by uysz on

Accurate and timely reporting of animal rabies test results and potential human exposures is necessary to guide case management and define rabies epidemiology. Accordingly, Nebraska Department of Health and Human Services (NDHHS) collaborated with Kansas State University Rabies Laboratory (KSU-RL) in 2011 to establish electronic laboratory reporting (ELR) of animal rabies test results to Nebraska's Electronic Disease Surveillance System (NEDSS). If a potential human rabies exposure is verified, NDHHS authorizes state-paid rabies testing through a contractual agreement with KSU-RL.

Submitted by uysz on

From December 2014 to February 2015, Maricopa County, Arizona was the host site for several high profile events, including Super Bowl, Pro Bowl, and Fiesta Bowl. Public health officials were allocated with implementing numerous enhanced surveillance activities to quickly identify health risks to the public. These included laboratory-based surveillance, mortality surveillance, and syndromic surveillance at select hospitals, urgent cares, hotels, and on-site at the events.

Submitted by uysz on

Vector borne diseases like Japanese Encephalitis (JE) result from the convergence of multiple factors, including, but not limited to, human, animal, environmental, and economic and social determinants. Thus, to combat these problems, it is essential to have a systematic understanding of drivers and determinants based on a surveillance system that systematically gathers and analyzes data emanating from across multiple disciplines.

Submitted by uysz on

Health information increasingly needs to flow beyond the jurisdiction in which it was originally collected. As both people and microbes move across jurisdictional boundaries with increasing speed and ease, so too must health information. With an increased focus on privacy and security regulations comes an increased level of caution and formality related to data exchange between organizations, thus increasing the use of data exchange/data use agreements to establish clear parameters for exchange.

Subscribe to Data Sharing