Improving Health Equity Requires Addressing Multiple Race and Ethnicity Data Collection Barriers
March 8, 2023
With accurate and complete public health data, policymakers can be better equipped to interpret and use data to dismantle the legal, social, political, and economic systems that create inequities. However, state collection of non-white racial and ethnic group data has long been incomplete and unreliable due to several barriers. Overcoming these barriers requires legal and policy solutions at multiple levels.
State collection of non-white racial and ethnic group data has long been incomplete and unreliable. With accurate and complete public health data, policymakers can be better equipped to interpret and use data to dismantle the legal, social, political, and economic systems that create inequities in the first place. However, there are several barriers to the collection of race and ethnicity data, as well as public health data more generally. This article explores those barriers and identifies law and policy solutions to improve data collection.
Importantly, the law is generally not a barrier to public health departments collecting race and ethnicity data. State, Tribal, and local health departments have the legal authority to collect data, for example on communicable diseases, vital events, and immunizations. This includes collecting race, ethnicity, and other demographic data. The Health Insurance Portability and Accountability Act (HIPAA) is often cited as a legal reason that protected health information (PHI) cannot be disclosed to a health department.
This is inaccurate. HIPAA contains a specific exception to its authorization requirement that allows covered entities to disclose PHI to public health authorities for public health purposes where the public health authority is authorized by law to collect the information. Public health authorities include federal, state, local, territorial, and Tribal public health agencies. Other laws that apply to subsets of health information — for example, substance use, HIV/AIDS, education records — may or may not allow reporting for public health purposes and need to be evaluated in addition to HIPAA.
There are, however, several non-legal barriers to the collection of race and ethnicity data. Data collection occurs largely outside of public health departments (i.e., at the provider, hospital, or laboratory level), which tends to produce inconsistent data quality. Many provider electronic health record (EHR) systems and public health data systems do not allow for selection of more than one race or ethnicity, which significantly underrepresents multiracial and multiethnic identities.
Selection of multiple races may result in an individual being reported as “other,” which is not useful information for health departments trying to identify disparities. Additionally, not all race and ethnicity categories across EHRs and public health data systems are the same, meaning that data are not collected and reported in a standardized fashion. All of this leads to inconsistent data collection and persistent data quality issues. For more information, see The Council of State and Territorial Epidemiologists’ report examining the gaps in public health reporting of race and ethnicity during COVID-19.
Overcoming these barriers requires legal and policy solutions at multiple levels. First, utilizing existing legal authority, states should take steps to collect more complete race and ethnicity data. Second, states can explore whether to mandate reporting of race and ethnicity and whether to adopt penalties for failure to report, which can complement outreach and education efforts. Third, the federal government can do more to encourage provider reporting to public health and tie financial incentives to such reporting. Fourth, the Office of Management and Budget (OMB) should revise its Directive No. 15, which created minimum race and ethnicity categories the federal government must use when collecting race and ethnicity data. OMB’s guidelines are important because they tend to represent a data collection floor across various levels of government, as well as the private and non-profit sectors. OMB is currently in the process of revising its race and ethnicity categories.
Finally, Congress should consider codifying requirements and providing sustainable funding for creating and maintaining a modern, robust, and interoperable public health data infrastructure. While more than $1 billion has been allocated toward CDC’s Data Modernization Initiative, estimates for sustainable funding range from more than $7 billion over five years to more than $36 billion over ten.
To be sure, what works in one jurisdiction may not work in another. Legal and policy data collection strategies should be tailored to the unique needs of each jurisdiction while also supporting the ability to analyze data and identify trends at the local, state, and national levels. Community advocates and stakeholders need to be engaged co-contributors. Finally, management of privacy risks, in particular re-identification, need to be considered when sharing or disaggregating data at the population level.
The Network recently published Disaggregation of Public Health Data by Race & Ethnicity: A Legal Handbook. The handbook addresses the role of law in collecting and disseminating public health data disaggregated by race and ethnicity, including topics covered in this article. The handbook is intended to assist public health practitioners and attorneys with framing and navigating the various legal and non-legal issues around disaggregated public health data.
This post written by Carrie Waggoner, J.D., Director, Network for Public Health Law—Mid-States Region Office.
The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document do not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.
Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not represent the views of (and should not be attributed to) RWJF.
The 2023 Public Health Law Conference will focus on collaborative efforts to harness the power of law and policy to make real and lasting systems change. Sessions on the use of public health data to advance health equity will be among the more than 40 sessions. Learn more and register.