Sharing De-identified Data
Former Worker Medical Screening Program (FWP)
Sharing De-identified Data: Use the collected information to implement new
strategies for worker safety and health at DOE sites and to
inform industry-specific researchers while still protecting
sensitive participant information and confidentiality.
The confidentiality and privacy rights of former workers are
not only a legal requirement, they are crucial to establishing
and maintaining credibility with the former worker community.
All medical information that is collected as part of this program
is treated as confidential and is used only as allowed by the
Privacy Act of 1974. All FWP activities are conducted with the
approval of the Institutional Review Boards, or Human Subjects Committees,
of DOE and involved universities. All individuals sign an informed
consent and Health Insurance Portability and Accountability Act (HIPAA)
authorization prior to participation.
De-identified (i.e., with personal identifiers removed), combined medical results from FWP activities are shared with the DOE Field Office Managers, Laboratory Directors, Contractor Plant Managers, and Site Occupational Medical Directors (SOMDs) during site visits and reported on at various meetings, such as the EFCOG Occupational Medicine Subgroup meetings and the Beryllium Health and Safety Committee meetings, as well as through the annual report. The collection and analysis of this information can assist with identifying disease trends at a particular site, within a specific population (job class) of workers, or for a specific exposure/hazard. In addition, DOE has applied operational "lessons learned" to its current workforce based on exposures identified through the FWP.
The gathered data are also valuable for other researchers to
review. In order to share this information with researchers
while still protecting the workers' right to privacy and confidentiality,
the data will be provided in de-identified form to the DOE Comprehensive
Epidemiologic Data Resource (CEDR). CEDR is a public-use data
repository that was established to improve public access, as
well as access by researchers, to data from health studies and
other activities funded or conducted by the Department.