The Oregon Health Authority wants a change to state law allowing it to collect data on people’s immigration status or country of birth but is backing off a proposal allowing it to share detailed patient information with local public health agencies and others.
The Senate Health Committee on Wednesday voted 3-2 to advance Senate Bill 216, which makes a fix to previous legislation intended to produce better data to assist in addressing health inequities. The party-line vote followed five committee meetings where lawmakers raised concerns about government data collection efforts.
The health authority, however, stopped pushing for an amendment to the bill allowing it to share specific data with local agencies and others that could identify individuals. State health officials previously said the authority needed the ability to share more detailed data with other entities, such as coordinated care organizations, regional insurers contracted to oversee Oregon’s version of Medicaid.
“We wanted to be really clear about patient privacy,” state Sen. Deb Patterson, a Salem Democrat who chairs the committee, told The Lund Report, adding the bill will still improve data on health inequities.
The legislation follows up a law passed in 2021 to give the state a better picture on health disparities falling on racial, ethnic and other lines. The law required insurers and health care providers to collect data voluntarily provided by patients known as REALD — standing for race, ethnicity and disability status, along with their sexual orientation, gender identity and preferred language.
Another state law prevents the health authority and other government entities from collecting data about people’s country of origin, so SB216 removes that restriction and allows the health authority to share accumulated data that doesn’t reveal details on individuals.
State Sen. Cedric Hayden, a Roseburg Republican who serves as committee vice chair, said Wednesday he was glad the health authority “saw the light” and dropped the amendment allowing for increased data-sharing across agencies. But he said the bill still gave the health authority access to sensitive information patients may have thought would only be given voluntarily.
James Schroeder, interim health authority director, responded to lawmakers’ concerns in a letter last month stating that the agency uses individual-level data already on Oregon Health Plan enrollment, medical claims as well as birth and death records.
“Additionally, collection and analysis of individual level data allows OHA to better control for statistical bias, thus leading to more accurate and precise analysis of population-level health outcomes and causes of health disparities,” he wrote.
Schroeder added the authority might need to share specific data with a local public health agency to improve “health equity metrics.”
Marjorie McGee, director of a health authority unit overseeing racial and other data, told the committee last month that “most of our work is based on individual data.” She said that if the health authority could only share bulk data, it couldn’t first “clean it up” by removing duplicate entries.
Kevin Campbell, a lobbyist for the Oregon Association of Hospitals & Health Systems, raised concerns about the bill to the committee last month. Patients are assured that any personal information they volunteer will be treated “as a confidential public health record,” and any changes to restrictions on sharing of that data should be “narrowly tailored,” he said.
“We weren’t made aware of this legislation before it was introduced and we’re unsure why the issue wasn’t raised in advance of session at a time when stakeholders could have been better engaged to consider all the potential impacts of this change,” he said.
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I appreciate the coverage of this topic. However, the sentence structure made it was hard to understand exactly what the proposed legislation does / does not change and which actions the various parties supported or did not support.
Example: "The Senate Health Committee on Wednesday voted 3-2 to advance Senate Bill 216, which makes a fix to previous legislation intended to produce better data to assist in addressing health inequities."
If the objective is to produce "better data," is that the intended outcome of SB 216 or of the "previous legislation" or both? The subsequent paragraphs did not make it clearer.
I assume that those who are more familiar with these issues follow the narrative. For a person learning about them for the first time, I struggled to understand "who's on first."