Accepted for/Published in: JMIR Public Health and Surveillance
Date Submitted: Sep 11, 2023
Open Peer Review Period: Sep 8, 2023 - Sep 22, 2023
Date Accepted: Jan 20, 2024
(closed for review but you can still tweet)
Data Sharing in a Decentralized Public Health System: Lessons from COVID-19 Syndromic Surveillance
ABSTRACT
The COVID-19 pandemic revealed that data sharing challenges persist across the public health information systems. We examine the specific challenges in sharing syndromic surveillance data between state, local, and federal partners. These challenges are complicated by US federalism, which decentralizes public health response and creates frictions between different government units. Current policies restrict federal access to state and local syndromic surveillance data without each jurisdiction’s consent. These policies frustrate legitimate federal governmental interests and are contrary to ethical guidelines for public health data sharing. Nevertheless, state and local public health agencies must continue to play a central role as there are important risks in interpreting syndromic surveillance data without understanding local contexts. Policies establishing a collaborative framework will be needed to support data sharing between federal, state, and local partners. A collaborative framework would be enhanced by a governance group with robust state and local involvement and policy guardrails to ensure data uses are appropriate. These policy and relational challenges must be addressed to actualize a truly national public health information system.
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© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.