Blog Post

Let’s get R.E.L. (about health equity data)

This week’s post is by Karen Siegel, health policy fellow at Connecticut Voices for Children. She explains the importance of having data on race and ethnicity when it comes to health, and details the findings from her organization’s research into what other states are doing, what gaps exist in Connecticut, and what we as a state could do better.  

Health equity means that everyone—regardless of race, ethnicity, income, disability, sexual orientation, or any other factor—has the opportunity to be as healthy as possible. In order to measure how far we have to go to reach the goal of health equity, we must have reliable and robust data.

Since Connecticut is small and highly segregated by both race and income, the needs of smaller populations are often difficult to identify when considering only statewide averages. For example, the state’s black and Latino residents are more likely than white residents to be uninsured, to die in infancy, and to report being in poor health. Race/ethnicity data matters because these disparities are not explained by geography or income alone. A legacy of discriminatory policies, enduring institutionalized racism, and cultural factors all influence the health of different communities in different ways. In order to meet the needs of all of Connecticut’s residents, we must be able to identify how those needs vary and evaluate the efforts to close these gaps.

Connecticut Voices for Children recently published a report on the availability of race/ethnicity data to evaluate Connecticut’s progress toward health equity. This report details both what data is currently collected and publicly available in Connecticut and what we can do better. Other states have taken the lead in requiring the collection of race/ethnicity data, expanding the categories collected, and standardizing the way in which such data is collected. For example:

  • California has laws (see here and here) governing the collection of race/ethnicity data that outline how this data can be used, ensure the protection of individuals’ privacy, and require that the data be publicly available. These laws specify that detailed race/ethnicity data be included when agencies report on rates of major diseases, major causes of death, pregnancy, and housing. While these statutes require public reporting, they also require that the reports ensure individuals’ privacy and statistical reliability.
  • Laws in North Carolina require medical providers to collect self-reported race/ethnicity data and mandate the inclusion of detailed race/ethnicity categories on birth and death certificates.
  • Minnesota has instituted efforts to collect information on preferred language and country of origin, which provides a richer set of data but may miss inter-generation factors that affect the children and grandchildren of immigrants.
  • Other states and municipalities have a range of regulations and legislation governing the collection of such data, including New York City, Massachusetts, and Oregon.

Best practices include relying on self-report of race/ethnicity, standardizing categories across agencies, and consulting with affected communities before making changes.

In Connecticut, most publicly available health data is not disaggregated by race/ethnicity. Data collection and dissemination remain fragmented and inconsistent. This makes it difficult to identify health disparities and evaluate potential solutions. Having access to standardized racial and ethnic health data would, for example, make it possible to determine if innovations to improve care coordination impact disparities. It could help answer questions such as whether there are cultural barriers to accessing preventive oral health care, and what outreach projects are most effective at decreasing the number of children from each community who do not receive care. Data would help determine if there are racial disparities in use of health care among children covered by HUSKY, and if so, what interventions can close those gaps.

Given that the state is engaged in multiple efforts to broadly improve the collection, integration, and availability of the data it collects, this is an ideal time to improve Connecticut’s health equity data. Our report recommended the following changes:

  1. Establish reporting guidelines. Reports produced by government agencies should consistently disaggregate indicators by race/ethnicity.
  2. Improve the accuracy of race/ethnicity data. Incorporate guidelines on race/ethnicity data collection into ongoing training for providers, outreach workers, and certified enrollment counselors to improve the quality of the data collected and promote self-reporting of race/ethnicity.
  3. Increase timeliness. Routinely share data in accessible formats.
  4. Data integration. Enable to better evaluate disparities and the impact of policies.
  5. A robust public data portal. Public access to actionable, quality data is vital to improve evaluations of health systems and policy changes.
  6. Reconsider race/ethnicity and disparity categories. Data categories should be consistent and more detailed in order to capture disparities in many communities. The five standard categories (black, white, Latino, Asian, and other) risk conflating the needs of communities that have different experiences, cultures, and histories. The National Vital Statistics System offers one example of how to expand race and ethnicity categories and currently offers 20 options along with the ability to check multiple boxes.

Promoting health equity requires that we understand the complex interactions between health and the cultural, environmental, and societal factors that influence health. Accurate race and ethnicity data can paint a more detailed and realistic picture of barriers to care and can help providers and policymakers to better address these barriers, ensuring a healthier Connecticut.