SEER-Medicare: Overview of the Process for Obtaining Data

The SEER-Medicare data are available to outside investigators for research purposes. Although personal identifiers for all patient and medical care providers have been removed from the SEER-Medicare data, there remains the remote risk of re-identification (given the large amount of data available). In light of the sensitive nature of the data, maintaining patient and provider confidentiality is a primary concern of NCI, SEER, and Centers for Medicare and Medicaid Services. Therefore, the SEER-Medicare data are not public use data files. Investigators are required to obtain approval in order to obtain the data. The purpose of the approval process is not to critique the methodology or merits of proposed projects, but to ensure the confidentiality of the patients and providers in SEER areas. NCI will work with investigators requesting data files to balance their research needs with those of the individuals and institutions included in the data.

For reasons of confidentiality, selected variables are not routinely released on the SEER-Medicare files. These variables include the patient's Census tract and ZIP code, as well as the ZIP code for physicians and hospitals. Please review the Privacy and Confidentiality Issues section for more information on these variables.

Once a data request has been approved and all appropriate documents are on file, IMS (NCI's programming contractor) will provide an invoice to the investigator to cover the costs of creating the requested data files (see Cost of Acquiring SEER-Medicare Data). In accordance with an NCI-IMS contractual agreement, IMS will begin processing data requests upon receipt of payment. In order to ensure the security of the patient's information during transition of files, the data files will be encrypted using WinZip (256bit AES encryption) and password-protected. The data files will also be compressed using the GZIP compression utility. A program will be made available to unzip the files onto the user's PC in the directory that the user specifies. The PC must be equipped with Windows NT, Windows 95 or later. GUNZIP is necessary to unzip the files if using a UNIX or Linux machine.