New Data Standards and Collection Methods Detailed at CMS Health Equity Conference

Meagan Khau, MHA, director of the Data Analytics & Research Group in CMS’ Office of Minority Health, opened a discussion focusing on Priority 1 of the CMS Framework for Health Equity 2022–2032, a white paper “identifying a number of initiatives happening at CMS in terms of data collection efforts to address disparities in the underserved communities.”¹

Meagan Khau, MHA | Image Credit: cms.gov

This discussion, featured at the 2024 CMS Health Equity Conference, explored the importance of standardizing health equity data collection. The addition of optional questions on sexual orientation and gender identity to the Marketplace insurance application was also highlighted, with a focus on advancing health equity for LGBTQI+ individuals. Updates to the application, including new sociodemographic questions, were addressed, with a focus on ensuring alignment with health informtion technology interoperability standards and honing consumer privacy concerns.

Priority 1: Expand the Collection, Reporting, and Analysis of Standardized Data

CMS strives to improve our collection and use of comprehensive, interoperable, standardized individual-level demographic and SDOH data, including race, ethnicity, language, gender identity, sex, sexual orientation, disability status, and SDOH. By increasing our understanding of the needs of those we serve, including social risk factors and changes in communities’ needs over time, CMS can leverage quality improvement and other tools to ensure all individuals have access to equitable care and coverage.

Building on this, Nancy Chiles Shaffer, PhD, technical director of data strategy and operations at CMS’ Office of Minority Health, emphasized the critical need for collecting detailed sociodemographic data to advance health equity, also referenced in the CMS Framework for Advancing Health Care in Rural, Tribal, and Geographically Isolated Communities.² Both initiatives align with President Joe Biden’s Executive Order 13985. The order underscored the necessity of precise demographic data to evaluate equity across various factors like race, gender identity, disability, and more.³ She also explained how the CMS white paper complemented this.

Nancy Chiles Shaffer, PhD | Image Credit: LinkedIn

“We identify gaps in the availability and completeness of socio-demographic data collection across our programs and noted that where the data is collected, many are done so at standards that are not current,” Chiles Shaffer said. “Given this, the white paper notes that the lack of consistent data collection at a disaggregated level presents barriers to understanding the needs of specific subgroups, as well as to comparing data across programs and populations as needed or desired.”

“From this, we saw that there was a need for an establishment of standards for socio-demographic data across CMS programs, that we would align where possible in our collection,” she continued.

Morgan Gruenewald, MS, program analyst in the Center for Consumer Information and Insurance Oversight at CMS, discussed the addition of optional sexual orientation and gender identity (SOGI) questions to the Marketplace application,⁴ aligning with CMS’ goal of health equity for LGBTQI+ individuals and other underserved groups.¹ Developed over 2 years with extensive stakeholder input, the SOGI questions allow for free text responses and are posed alongside existing demographic questions. Initial response rates are around 20%, and CMS is analyzing these rates to improve data collection and consumer experience.

Morgan Gruenewald | Image Credit: LinkedIn

“Our effort to include SOGI questions on the Marketplace Application aligns with the CMS strategic plans health equity pillar, as well as HHS’s SOGI data action plan,” Gruenewald explained. “We added these questions to the application in the context of several executive orders that direct federal agencies to leverage data collection to advance health equity for LGBTQI+ individuals and other underserved populations.”

Khau addressed privacy concerns regarding the new SOGI questions and ensured that responses wouldn’t affect plan options or care received. The questions are only posed to those 12 years or older, with provisions for skipping or indicating uncertainty, she stated. Despite some technical limitations, the inclusion of these questions marks a significant step toward better understanding and addressing the needs of LGBTQI+ and other underserved populations.

The Affordable Care Act's streamlined application process, including the new SOGI questions, impacts Medicaid and the Children’s Health Insurance Program (CHIP) programs by providing a legal pathway for collecting such data, according to Karen Matsuoka, PhD, senior policy advisor for health equity at CMS.

“The relevant thing to know is that because it is a single streamlined application process, state Medicaid and CHIP agencies have—I'll put it nicely and say there are a lot of hoops that state Medicaid and CHIP agencies have to jump through if they want to deviate in terms of what they ask on their Medicaid and CHIP applications if it's different from what's already being asked on the Marketplace application,” she said.

Karen Matsuoka, PhD | Image Credit: LinkedIn

Matsuoko explained that CMS had provided guidance to state agencies on implementing these questions, emphasizing confidentiality and data submission standards. The agency aims to use these data to improve response rates and data accuracy while maintaining flexibility.

“When Marketplace decided to make this move, 2 years in the making, to add these questions, it was huge for Medicaid and CHIP because, as you might imagine, we've had years and years of experience of state Medicaid and CHIP agencies wanting to do this, but just legally there wasn't a pathway,” she continued. “So because this is a big change in the Medicaid and CHIP world, we did issue what we call a ‘center informational bulletin’ or ‘CIB’ to explain to our state Medicaid insurance agency partners who then take this policy and then decide how they're going to implement it.”

Collaborative efforts and the central role of data were brought to attention by Abigail Viall, ScD, MA, senior advisor for federal inter-agency strategic affairs in the CDC Office of Public Health Data, Surveillance, and Technology. She discussed initiatives like the CDC’s public health data strategy enhancing data sharing and system connections.⁵

Abigail Viall, ScD, MA | Image Credit: LinkedIn

"Our strategy is really about addressing gaps in data, making it easier to share data, and connecting data and data systems between public health and other critical stakeholders, including health care, social services, and others,” she explained.

Programs like syndromic surveillance and electronic case reporting have expanded, improving public health responses, according to Viall. Maternal Mortality Review Committees, supported by the CDC, are addressing maternal health disparities by combining data for targeted interventions.⁶

"We need data in order to inform our actions and to drive improvement, and that data needs to flow across the members of the team without a lot of effort,” she continued. “It needs to be accessible."

In conclusion, Viall echoed that the CDC remains committed to improving data integration, inclusiveness, and the empowerment of frontline staff with tools and training for better data collection.

References

1. CMS framework for health equity 2022–2032. CMS. Updated May 30, 2024. Accessed May 30, 2024. https://www.cms.gov/priorities/health-equity/minority-health/equity-programs/framework

2. CMS framework for advancing health care in rural, tribal, and geographically isolated communities. CMS. November 2022. Accessed May 30, 2024. https://www.cms.gov/files/document/cms-geographic-framework.pdf

3. Executive order on advancing racial equity and support for underserved communities through the federal government. The White House. January 20, 2021. Accessed May 30, 2024. https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-advancing-racial-equity-and-support-for-underserved-communities-through-the-federal-government/

4. New sexual orientation and gender identity (SOGI) questions on the Marketplace application. HHS. October 24, 2023. Accessed May 30, 2024. https://www.hhs.gov/guidance/document/new-sexual-orientation-and-gender-identity-sogi-questions-marketplace-application

5. The public health data strategy. CDC Office of Public Health Data, Surveillance, and Technology. Updated April 11, 2024. Accessed May 30, 2024. https://www.cdc.gov/ophdst/public-health-data-strategy/index.html

6. National Syndromic Surveillance Program (NSSP). CDC. Accessed May 30, 2024. https://www.cdc.gov/nssp/index.html