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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)

The final, peer-reviewed published version of this preprint can be found here:

Data Sharing in a Decentralized Public Health System: Lessons From COVID-19 Syndromic Surveillance

Rigby RC, Ferdinand AO, Kum HC, Schmit C

Data Sharing in a Decentralized Public Health System: Lessons From COVID-19 Syndromic Surveillance

JMIR Public Health Surveill 2024;10:e52587

DOI: 10.2196/52587

PMID: 38546731

PMCID: 11009847

Data Sharing in a Decentralized Public Health System: Lessons from COVID-19 Syndromic Surveillance

  • Ryan C. Rigby; 
  • Alva O. Ferdinand; 
  • Hye-Chung Kum; 
  • Cason Schmit

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.


 Citation

Please cite as:

Rigby RC, Ferdinand AO, Kum HC, Schmit C

Data Sharing in a Decentralized Public Health System: Lessons From COVID-19 Syndromic Surveillance

JMIR Public Health Surveill 2024;10:e52587

DOI: 10.2196/52587

PMID: 38546731

PMCID: 11009847

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