Minimizing Disclosure Risk in HHS Open Data Initiatives. 1. Licensing

09/29/2014

Under licensing arrangements, prospective users request restricted (that is, non-public) data files through a formal application process. To obtain such data, users must demonstrate that the data will be stored and used in a secure environment that meets the issuing agency’s standards. This may require an initial agency inspection and a willingness on the part of the user to submit to subsequent inspections. As part of the proposal the user will generally have to explain why the data are needed and how they will be used, and access may be limited to variables and records for which the user can demonstrate a critical need. To receive the data, the user typically has to sign a nondisclosure agreement. If the user’s future research is dependent on further use of the agency’s data, such an agreement is likely to provide a powerful disincentive to violate its terms. As an example of a well-established licensing program, the Centers for Medicare & Medicaid Services (CMS) provides extensive data from its Medicare and Medicaid programs through its Chronic Conditions Warehouse (Shatto 2014).

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