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In general, researchers should familiarize themselves with standard Census Bureau disclosure rules for external (FSRDC) projects (a copy of the RDC Researcher Handbook can be useful) and should prepare the appropriate memo documenting the requested output (see RDC Disclosure Request Memo for an example, but contact the data custodian for any special requirements).
For instance, as data sets are shared, data may be scrubbed to remove all identifiers, or some identifiers may be kept with the data or the data custodian.
This allows the data custodian to ensure that patient privacy is protected in a defensible manner.
The data custodian deemed these thresholds to be acceptable to the organization.
The data custodian then needs to select the quasi-identifiers in the data set.
One data custodian was responsible for ensuring data quality throughout the study period.
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In all cases, data custodians can provide additional information.
Because results are run against confidential data, they will be reviewed by the data custodians for disclosure concerns.
This requires determining the number of data custodians required to act on the hold request, and the amount of data affected thereby.
While these data are accessible to approved researchers through the standard ethical and data application processes, they are not publicly available and are maintained by the relevant government data custodians.
The authors also are grateful to the many data custodians who have been willing to share their data with OBIS, thus making possible this type of large-scale analysis.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com