The Department of Human Services supports research that increases knowledge, improves practice and informs policy in the field of human services and will, within specific guidelines and in accordance with our legal obligation to protect client confidentiality, share data for these purposes. DHS policy and the DHS Data and Research Privacy Board (hereafter known as “Privacy Board”), comply with the requirements set forth in the Health Insurance Portability and Accountability Act (HIPAA).
What types of data will DHS provide?
In general, DHS will provide de-identified or limited data sets for research purposes based upon review of the data request form.
- De-identified data contains information previously recorded or collected without any of the 18 HIPAA-defined identifiers or traceable code, or DHS-identifiable information or that has been stripped of all 18 HIPAA-defined identifiers.
- Limited data must have 16 out of the 18 HIPAA-defined identifiers removed.
- List of HIPAA-defined identifiers
When identified data, that containing more than two of the 18 HIPAA-defined identifiers, are necessary for purposes of the research, DHS will consider providing access to these data if the project has been approved by the researcher’s Institutional Review Board (IRB). The IRB approval, including a waiver of authorization, must be submitted with the request. Exceptions to the IRB requirement will be made on a case-by-case basis by the DHS Privacy Board.
What about human subject research?
Human subject research is designed to contribute to generalizable knowledge. It is conducted by a researcher on a living individual through intervention or interaction with the individual. Any research project that proposes to involve DHS clients as human subjects (i.e., primary data collection methods via surveys, focus groups, or individual interviews) requires an IRB approval as well as approval from the DHS Privacy Board. All requests to engage in human subject research with DHS clients are expected to adhere to established ethical practices in human subject research, including informed consent.
How do I request data and/or approval for research involving DHS clients?
Anyone interested in conducting research involving DHS data/clients must submit a research/data request form, along with IRB approval and a copy of the IRB protocol, if applicable, to the DHS Privacy Board. The Privacy Board will respond by email with further questions and/or its decision within 30 days. If the research request is approved, a confidential data-sharing recipient requirements/conditions form must be completed and submitted to the DHS Privacy Board. Once the requirements/conditions form has been received, the researcher will be contacted regarding next steps (e.g., data-sharing mechanism) and timeline for completion.
NOTE: DHS reserves the right to deny requests for data or research that do not increase knowledge, improve practice or inform policy in the human services field or that violate DHS policies/procedures.