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Proposed Framework for Adopting Privacy-Preserving Record Linkage for Public Health Action
Aditi Pathak1, Laina Serrer, Meera Bhalla
1Author Affiliations: American Institutes for Research (Dr Pathak, Dr Zapata, Mss Serrer and Bhalla, and Dr Baier), Arlington, Virginia; National Center for Chronic Disease Prevention and Health Promotion (Dr King), National Center for Immunization and Respiratory Diseases (Dr Srinivasan), National Center for Injury Prevention and Control (Dr David-Ferdon), Office of Public Health Data, Surveillance, and Technology (Drs Luxenberg, and Gundlapalli), Centers for Disease Control and Prevention, Atlanta, Georgia; and National Center for Science and Engineering Statistics, National Science Foundation (Ms Mirel), Alexandria, Virginia.
Objectives:
To propose a framework for adoption of privacy-preserving record linkage (PPRL) for public health applications.
Methods:
Twelve interviews with subject matter experts (SMEs) were conducted virtually and coded using an inductive approach. A collaborative session was conducted with SMEs to identify key steps in the PPRL project lifecycle which informed development of a PPRL implementation checklist.
Results:
This framework has 2 decision-making levels: the organization level and the project or program level. Organization-level considerations include PPRL governance, the optimal choice among approved PPRL solutions, the need for longitudinal linkages, the potential issue of vendor lock-in, and costs. Program-level considerations include characteristics of the PPRL use case, linkage quality and accuracy, data privacy and use, security thresholds, compatibility with data owners' data architecture, and trade-offs between open-source and commercial PPRL solutions. A PPRL implementation checklist was developed to guide public health practitioners considering PPRL for data linkage.
Conclusions:
The framework may be considered by public health entities to guide adoption and implementation of PPRL in public health research and surveillance. Public health experts may refer to this framework and the PPRL implementation checklist when determining the appropriateness of PPRL for specific use cases and implementation planning.
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