Advocating for SDOH data standards to support health equity
Healthcare stakeholders have successfully advocated for updated race and ethnicity data standards, but more work is needed to ensure inclusive data collection for health equity.
The United States has a health equity problem. However, a lack of social determinants of health (SDOH) data standards has hampered efforts to improve outcomes.
According to 2022 data from the Commonwealth Fund, the U.S. has the worst health disparities among 11 other high-income nations.
"We cannot manage what we can't measure, so data is really important," said Keysha Brooks-Coley, vice president of advocacy at the Blue Cross Blue Shield Association (BCBSA). "If you have that data, it can lead to changes in how healthcare is provided to certain populations and in certain communities."
Brooks-Coley stressed that data represents real individuals facing health and disparity issues that are frequently overlooked.
For instance, Black and Native American women are two to three times more likely to die from pregnancy-related causes than white women.
Earlier this year, the Office of Management and Budget (OMB) updated standards for the collection and presentation of race and ethnicity data across federal agencies for the first time since 1997.
The agency incorporated feedback from a wide array of stakeholders, including a coalition created by BCBSA and the National Minority Quality Forum (NMQF).
Advocating for inclusive data standards
The Data Equity coalition includes almost two dozen member organizations representing providers, payers, health equity organizations, patient advocacy organizations and the research community.
"These are organizations that aren't always working on the same issues, but this is one that brings a lot of people together because they want to make sure that we have solutions that are moved forward that have an impact on people's lives," said Brooks-Coley.
"It's always better when you have multiple voices that can come together and collectively advocate on behalf of an issue. It gets the attention of legislators and influencers and policymakers because you have a lot of organizations that don't always agree all saying the same thing."
The coalition has advocated for inclusive data collection across race, ethnicity, and language, as well as sexual orientation and gender identity (SOGI) data.
We cannot manage what we can't measure, so data is really important.
Keysha Brooks-ColeyVice president of advocacy, BCBSA
Brooks-Coley noted that while organizations across the healthcare continuum are collecting SDOH data on an individual basis, national standardization is needed to inform population health efforts.
"We wanted to see established, clear and consistent requirements for collecting race ethnicity, language and SOGI data, including a minimum standard for disaggregated race ethnicity collection consistent with interoperability standards," Brooks-Coley added.
"When we look at data, identifying subpopulations facing disparities is extremely important to inform culturally responsive outreach and health interventions.".
Updates to OMB's standards
The revised standards use a single combined question for race and ethnicity and encourage respondents to select as many options as apply to their identification.
Further, the updated standards require the collection of additional detail beyond the minimum required race and ethnicity categories to support data disaggregation.
Additionally, OMB added Middle Eastern or North African as a new minimum category.
Now that OMB has released the updated standards, federal agencies are charged with creating action plans to implement the new requirements within 18 months.
Brooks-Coley pointed out that departments can also make additional policy changes for entities under their purview.
As HHS creates its agency action plan, the Data Equity Coalition will advocate for additional priority policies, including SOGI data standards, which were not addressed in the updated OMB standards.
"That's extremely important for us because there are a lot of entities who are collecting data and using data, but the data has to be able to talk to each other," Brooks-Coley continued.
"It has to be data that can be disaggregated and used across many different parts of our healthcare ecosystem, so we are looking forward to having an opportunity to have a conversation with the Department of Health and Human Services."
Ultimately, Brooks-Coley reinforced the importance of SDOH data standards to move the needle on health equity.
"This is about people," Brooks-Coley emphasized. "It's not just about data standards, but it's about the people behind the data standards and about making sure that people have greater access to quality, affordable health care."
Hannah Nelson has been covering news related to health information technology and health data interoperability since 2020.
