Dear USET/USET SPF Family,
On September 28, 2022, the Department of Health and Human Services (HHS) announced it is initiating consultation on the possible creation of an HHS Tribal Data Sharing Policy.
This action is based on a report the Government Accountability Office (GAO) published in March 2022, entitled "Tribal Epidemiology Centers: HHS Actions Needed to Enhance Data Access," which found that access to epidemiological data amongst the 12 Tribal Epidemiology Centers (TECs) varied greatly.
While federal law authorizes TEC’s to access data from HHS and its affiliate agencies like the Indian Health Service (IHS) and the Centers for Disease Control and Prevention (CDC), the GAO found that access to non-public data (particularly COVID-19 related data) varied among the TEC’s. In the report, the GAO recommended five Executive Actions that the HHS should take to develop a policy that clarifies data access for Tribal partners. HHS concurred with these recommendations, listed below, and initiated consultation with Tribal and Urban partners.
GAO Suggested Executive Actions:
- The Secretary of HHS should develop a policy clarifying the HHS data (including monitoring systems, delivery systems, and other protected health information) that are to be made available to the TECs as required by federal law
- The Director of CDC should develop written guidance for TECs on how to request data. Such guidance should include information on data potentially available to TECs, how to request data, agency contacts, criteria the agency will use to review such requests, and time frames for receiving an agency response to data requests.
- The Director of CDC should develop and document agency procedures on reviewing TEC requests for and making data available to TECs. These procedures should include a description of data potentially available to TECs, agency contacts, criteria for reviewing TEC data requests, and time frames for responding to TEC requests.
- The Director of IHS should develop written guidance for TECs on how to request data. Such guidance should include information on the data available to TECs, how to request data, agency contacts, criteria the agency will use to review such requests, and time frames for receiving an agency response to data requests.
- The Director of IHS should develop and document agency procedures on reviewing TEC requests for and making data available to TECs. These procedures should include a description of the data available to TECs, agency contacts, criteria for reviewing TEC data requests, and time frames for responding to TEC requests.
HHS will hold Tribal consultations on this topic on October 13, 2022, and October 19, 2022. The agency also drafted framing questions for the consultation, which are listed in the Dear Tribal Leader Letter. USET SPF will attend the consultation and will likely submit comments to the HHS regarding the creation of the Tribal Data Sharing Policy.
For more information, contact Ashton Martin, USET SPF Health Policy Analyst, at amartin@usetinc.org.
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