Manatt Health published a report this month, in partnership with Blue Shield of California, entitled “Unlocking Race and Ethnicity Data to Promote Health Equity in California: Proposals for State Action.” As a coalition, we believe creating a statewide HIE network in California — breaking down barriers between siloed health networks to increase patient access to medical records — will enable California to deliver on its fundamental goals of health equity in every community. 

The report contains numerous findings that point to the urgency of the need for better data sharing — and how it is integral to shoring up the deep inequities laid bare by COVID-19. 

Here are our top takeaways from the report:

• The data vacuum is severe and widespread, and although health plans are well-positioned to collect race and ethnicity data and then use this information to promote health equity, they face several data collection challenges that result in significant gaps in reporting. Two-thirds of commercial health plans, half of Medicaid plans, and more than a quarter of Medicare plans have race data missing for more than half of their membership, with ethnicity data sparser still. 
• COVID-19 shed light on racial and ethnic health and healthcare inequities in California and across the country. It also shed light on the dearth of reliable, dependable race and ethnicity data, which is essential as we seek to understand the contributors to the disparities that led to increased COVID-19 death rates in communities of color.
• Gaps in race and ethnicity data also limit healthcare stakeholders’ ability to proactively shore up those inequities, which have led to higher rates of chronic disease, higher infant mortality rates, and lower life expectancies for communities of color.
• States are looking to more innovative strategies to gather better race and ethnicity data and use it to produce insights into barriers to care. California’s Department of Health Care Services (DHCS), for example, analyzes Medi-Cal Managed Care Plan (MCP) quality data to assess potential differences in health outcomes between population groups, and shares those analyses with plans to guide interventions. DHCS has also emphasized the importance of increased data collection to reduce disparities and inequities, through its broader California Advancing & Innovating Medi-Cal (CalAIM) proposal.
• But California could go much further. By assembling available data from state Medicaid, Marketplace, and public health departments—as well as state data resources (e.g., All Payer Claims Databases, hospital discharge databases)—state regulators and healthcare stakeholders would be better equipped to understand the gaps in data collection, and enact key reforms.
• What’s holding this robust race and ethnicity data collection back? A combination of member reluctance to provide race and ethnicity information, limited and uneven regulations across all lines of business, and inconsistent use of race and ethnicity data standards. This has led to many health plans increasingly relying on indirect or proxy methodologies to collect race and ethnicity data.

When it comes to recommendations, the report pulls no punches: 

• The first and foremost priority it lays out is that California must develop HIE capacity as a centralizing source of race and ethnicity data. “HIEs are uniquely positioned and functionally equipped to securely collect, link, and share race and ethnicity data among health plans, providers, and public and private payers. Building on their existing connections and processes, HIEs can use the data they receive from participants to create centralized race and ethnicity records for all members, improving data acquisition for healthcare providers and plans; apply a centralized, standardized method of race and ethnicity estimation or collection to fill race and ethnicity data gaps while minimizing the impact on overall data integrity; and facilitate race and ethnicity data standardization among participants.”
• Its second recommendation is requiring health plans to collect standardized race and ethnicity data across all regulated lines of business. As the report says, “Consistent data standards are critical for identifying and monitoring responses to health ecosystem inequities. A cross-agency workgroup should be convened to establish race and ethnicity data collection standards and acquisition targets for contracted and regulated health plans, potentially building on work planned to support the Annual Health Care Service Plan Health Equity and Quality Reviews. Requirements should be embedded in regulations…and state-administered contracts.”

All in all, the Manatt report presents a compelling and comprehensive summary of what our coalition has long believed: that to achieve California’s stated goals of health equity for all our communities, we must lay the groundwork for a statewide HIE network, establish a consistent funding source, and build the mechanisms to ensure universal participation.

To read the full report, click here.