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Conference on Sharing Infectious Disease Data in the DC Metropolitan Region

On January 15, 2013, Georgetown University’s Office of the Senior Vice President for Research hosted a conference in Copley Formal Lounge, which brought together representatives from the Maryland Department of Health and Mental Hygiene, the Virginia Department of Health, and the District of Columbia Department of Health.

The Executive Summary is below. A full copy of the report is available for download here: Sharing Infectious Disease Data in the DC Metropolitan Region.

Executive Summary

Demographic changes have been long associated with the spread of sexually transmitted infections, including HIV. Over the last decade Washington, DC has experienced major demographic shifts marked by the reshuffling of the population around the metropolitan area. These processes occurred as the region became aware of, and began addressing a major syndemic of HIV/AIDS, hepatitis, sexually transmitted infections and tuberculosis. Overcoming barriers in sharing these surveillance data across jurisdictions to improve patient care has proved challenging. However, experience demonstrates that collaboration in assessing and developing plans to overcome such barriers builds trust, enables effective information sharing, yields more effective disease prevention and improves patient care.

Subject-matter experts in public health, surveillance, and public health information technologies therefore met in Georgetown University's Copley Formal Lounge for a one-day conference to discuss regional sharing of infectious disease (HIV/AIDS) data in the DC metropolitan region. This group included representatives from the local and state public health jurisdictions of Maryland (MD), Virginia (VA) and Washington, DC (DC), the Center for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and faculty George Washington University, the University of Maryland and Georgetown University. During the morning session, after receiving an encouraging charge from Grant Colfax, current director of the Office of HIV/AIDS Policy in the White House, spokespersons from DC, MD, and VA each presented coordinated talks on common topics, such as the state of disease burden, data resources, management and quality, health informatics, current data sharing initiatives, and the implications of health care reform. These talks created foundation knowledge about points of similarity and difference among the region’s jurisdictions. In the afternoon, participants divided into three breakouts sessions on data characterization, technology and policy with the aim of making recommendations in support of sharing infectious disease data among stakeholders in the public health of jurisdictions in the Washington DC metropolitan region.

Participants in the Data Characterization breakout group made many recommendations, including:

  • Improve methods of data collection.
  • Provide an accurate overview of established and emerging data sources.
  • Integrating data collection and data sources to aid developing cross-jurisdictional and region-specific models
  • Integrate clinical and public health surveillance data.
  • Adopt a common set of surveillance metrics across all jurisdictions.
  • Adopt a common terminology describing key components such as surveillance metrics.
  • Enhance knowledge of internal and external policies/laws pertaining to data sharing.

Participants in the Technology breakout group made many recommendations, including:

  • Document differences and similarities in technologies of public health data management across the jurisdictions
  • Conduct research to clarify how the structure and function of HIEs will affect regional data sharing
  • Conduct joint assessments of each major jurisdiction’s approach to data security in order to build inter-jurisdictional confidence and trust for data sharing
  • Develop methods for ensuring routine flows of disease information and feedback among clinical and public health surveillance efforts.

Participants in the Policy and Legal breakout group made many recommendations, including:

  • Better define short and long term goals for regional data sharing
  • Conduct a careful review to confirm that no immediate legal barriers to data sharing
  • Identify and overcome technical, procedural and political barriers to regional data sharing
  • Develop an overall picture of current data reporting methods and other variations in local conditions that might affect regional data sharing
  • Integrate care and surveillance data as part of future regional data sharing.

Overcoming barriers to regional sharing of infectious disease data for improved patient outcome can occur if key steps are taken. This first regional conference identified three of the next key steps, including; forming a steering committee over the next 6-12 months, investigating and disseminating answers to specific questions in support of cross-jurisdictional data sharing in public health, and drafting a Memorandum of Understanding for data sharing among jurisdictions.

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