Solving problems of disclosure risk in an academic setting: using a combination of restricted data and restricted...

THE HEALTH AND RETIREMENT STUDY collects a vast amount of information about a sample of the U.S. population over age 50 from biennial interviews, supplemental questionnaires, and through linkages with administrative data including Social Security earnings and benefits records and Medicare claims records. To h onor i ts p ledge to t he r espondents that their data will be kept confidential, but at the same time meet its objective of providing useful data to researchers, it has develop ed procedures for stripping sensitive information (i.e., information that could facilitate re-identification of sample members) from data sets that are publicly released, and also for providing mechanisms for qualified researchers to gain access to a variety of restricted-access data files. These mechanisms include a procedure whereby highly qualified researchersin particular, only those who have a current grant from a federal agencycan apply to obtain restricted-access data sets for a limited amount of time, with the understanding that they will make no attempt to r e-identify s amp le m embers and t hat they w ill be audited to ensure that they have adhered to the agreedupon safeguards. For those who meet some but not all of the requirements for receiving these data, the files can be analyzed in a data enclave (a controlled, secure environment in which eligible researchers can perform analyses). This paper focuses on approaches to restricting data access that may need to be considered by investigators who plan to share their data, and by their institutional officials who will need to support that effort with appropriate infrastructure and policies. It also provides guidance to investigators and institutional review boards (IRBs) who seek access to restricted data generated and archived elsewhere.