SEER-Medicare: Privacy & Confidentiality Issues

NCI, the Centers for Medicare & Medicaid Services, and the SEER staff have great appreciation for the potentially sensitive nature of data about persons with cancer and the need to respect the privacy of patients and providers included in the SEER-Medicare data. In order to protect the SEER-Medicare data, NCI has obtained a Certificate of Confidentiality (CoC), which allows NCI and its contractors who have access to the data to refuse disclosure of identifying information on research participants (e.g., individual patients and individual providers) in any civil, criminal, administrative, legislative, or other proceeding, whether at the federal, state, or local level. Per this Certificate, NCI considers individual providers (e.g., physicians and other health care personnel) to be protected research participants; therefore, unencrypted identifiers for individual providers are no longer released.

Additional SEER-Medicare policies and practices related to privacy are described in this section:

• Encrypted Variables and Variables Restricted from Routine Release
• IRB Approval & HIPAA Regulations
• Laptops & Other Portable Media