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In this paper we provide detailed data disclosure policy options for information custodians under alternative risk thresholds.
There is a risk that the increasing number of medical data breaches are potentially eroding the public's trust in health information custodians in general [ 7, 8].
This permits health information custodians (such as hospitals) to disclose PHI to these agencies " for the purpose of analyzing and/or compiling statistical information with respect to the management of, evaluation or monitoring of, the allocation of resources to or planning for all or part of the health system, including the delivery of services" without individual consent.
For example, the number of records affected by breaches is already quite high: the U.S. Department of Health and Human Services (HHS) has reported 252 breaches at health information custodians (e.g., clinics and hospitals) each involving more than 500 records from the end of September 2009 to the end of 2010 [ 9].
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It has demonstrated that establishing a privacy-protecting data linkage facility has actually reduced requests for name-identified information from health data custodians [ 25].
The CHeReL receives personal identifiers only (i.e. no health information) from the data custodians to generate a linkage key, and a linkage key is returned to the data custodians.
Often, research ethics boards will not allow data custodians to disclose identifiable health information without patient consent.
Data custodians need to generalize their demographic information further for longitudinal data sets.
Finally, researchers receive only health information and a linkage key from the data custodians.
Information about the characteristics of geographical areas is being obtained from data custodians such as the Australian Bureau of Statistics.
We show that mailing list data are comparable to workforce information derived from surveys or indirectly derived from datasets released by data custodians.
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