Data Security & Confidentiality Issues

Data Security & Confidentiality Issues

The NAACCR Data Security & Confidentiality workgroup is updating existing NAACCR resources and developing new resources on these topics for NAACCR members.

Data Release

  • National Death Index Fact Sheet – April 2021
    • The National Death Index (NDI) Fact Sheet describes the benefit of central cancer registry linkage with NDI and clarifies allowable use of the NDI data resulting from the linkage.
  • Indemnification Primer – Original Release January 2022; Reviewed May 2023
    • Indemnification is a common obligation in contracts. The parties who enter into a contract together often use the language of the contract to contemplate potential problems and to plan for who will be responsible for such problems. This Primer provides an overview of how indemnification clauses are used in standard Data Use Agreements.
  • HIPAA Resources for Cancer Registries
    • This provides information and legal resources that outlines how HIPAA is applied to US cancer registries for both data collection and release. While many of these documents are historical, they are still relevant as the legislation still applies.
  • Data Requests from Individuals – January 2023
    • Central cancer registries can receive requests for information about specific individuals reported to the cancer registry. This Requests from or on behalf of Patients for Individual-level Information from Central Cancer Registries document aims to provide information about the role of a central registry when responding to these types of inquiries and provides recommended practices.

Data Security

  • What is MFA and Why Its’s a Good Thing– January 2023
    • This Factsheet provides an overview of MFA to help registries understand the need and nature of new log-in requirements from funding and other agencies.

  • Data Destruction Primer – Original Release January 2022; Reviewed August 2023
    • The Data Destruction Primer provides a high-level understanding of why data destruction, or media sanitization, are important and some best practices for data destruction.
  • Data Encryption and Hashtag Primer – January 2023
    • This Data Encryption and Hashing Primer provides a high-level overview on the topics of data encryption and data hashing, including an overview of different types of encryption, and what they are and can be used for, including hashing. This Primer also outlines concepts that should be understood when hashing is used with outside parties.

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