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Planning a Regional Data Ecosystem for Public Health Preparedness and Response
John Y Choe1, Martha S Ryan, Adam Elder
1Author Affiliations: Center for Disaster Resilient Communities, University of Washington, Seattle, Washington (Choe, Ryan, Casey, Patel, and Errett); Department of Industrial and Systems Engineering, University of Washington, Seattle, Washington (Choe and Ryan); Department of Epidemiology, University of Washington, Seattle, Washington (Elder, Garcia, and Baseman); Department of Environmental and Occupational Health Sciences, University of Washington, Seattle, Washington (Gassett, Blake, Paschall, Casey, Patel, and Errett); University of Washington Medicine Research IT (Raymond); and Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, Washington (Phuong).
Context:
Siloed data impede public health preparedness and response (PHPR). Challenges in PHPR data sharing and integration hamper the development and uptake of evidence-based strategies and interventions (EBSIs) and limit public health agencies' ability to reduce risk and enhance equity.
Objective:
To develop a concept for a regional data ecosystem connecting people, platforms, and processes for better PHPR data and decision making in the region.
Design:
We adopted a user-centered design approach. The Community of Practice (CoP; ie, those who represent the user groups) codesigned the data ecosystem. The CoP collaborated through 4 facilitated meetings (including an all-day, in-person workshop) and 7 document reviews over 7 months. Methods included environmental scans, synchronous and asynchronous feedback from the CoP, and subject-matter expert consultations.
Setting:
The Northwest region of the United States, designated as the US Department of Health and Human Services (HHS) Region 10, including 272 Tribal nations and the states of Alaska, Idaho, Oregon, and Washington.
Participants:
The nineteen-member CoP in the region, including state, Tribal, and local public health professionals, health care coalition representatives, and researchers, and 4 subject-matter consultants (eg, in data systems infrastructure, health information exchange, public health surveillance, and response).
Main Outcome Measures:
A whitepaper outlining key findings and recommendations for the region.
Results:
This whitepaper synthesizes a list of priority recommendations concerning governance, policy, logistics, data, and infrastructure. It emphasizes fostering trust between organizations through deliberate data governance planning. It addresses the need to lower technical, legal, and staffing barriers in data integration and sharing. A 125-page Supplementary Document provides additional details, http://links.lww.com/JPHMP/B713, including 90 recommendations for the development of a data ecosystem in the region.
Conclusion:
Fostering trust through codesign has been identified as central to the ecosystem development. The recommendations remain to be implemented and evaluated, contingent upon funding availability.
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