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Senate panel considers H293, shifting some health reporting to every three years and clarifying registry data access
Summary
H293 would move some Department of Health reports (including health‑equity reporting) to a three‑year cycle and clarify how cancer and ALS registries may share data with researchers, adding privacy‑board review language alongside institutional review boards.
Committee staff introduced H293 as a Department of Health request bill that would, among other things, change the frequency of certain department reports from annual to every three years and clarify statutory language governing access to disease registries for research.
Legislative counsel said the bill would amend a health‑equity reporting requirement so that the department submits consolidated results to the Legislature every three years beginning in 2028; the underlying duty to analyze data for racial, ethnic and other disparities and to publish results subject to state and federal law would remain. Separate amendments address rules for cancer and ALS registries and how data can be shared with researchers.
Committee discussion focused on a change in the bill that adds "privacy review boards" as an entity that may approve the waiver or alteration of individual authorization for use or disclosure of protected health information for research, in addition to institutional review boards (IRBs). Staff explained that federal rule changes in recent years have excluded certain public‑health surveillance from IRB jurisdiction and that privacy boards are an alternative review structure defined in federal rules.
Members raised questions about whether identifying information could be shared with researchers, how records are submitted to registries, and whether the statute should require written assurances or agreements when a registry shares identifying data. Staff said some of those questions reflect existing statute about when registries accept data and that the committee would bring the Department of Health in to answer operational questions.
The committee did not take a final vote during this session; staff and members requested Department of Health testimony to clarify dataflows, privacy protections and the need for written assurances for access.
