COVID Data Disaggregation: Legal Authorities and Barriers
Table of Contents
Table of Contents
Report Publish Date: April 15, 2021
This report describes the results of a survey of 10 states to determine what legal authority they have to collect data about race and ethnicity and legal barriers to reporting data that is disaggregated by race and ethnicity.
Primary Takeaways
The authors found that:
- Health departments can and do collect race and ethnicity data, and some are mandated to do so.
- Information is shared with states confidentially, but it can be shared publicly if it’s de-identified.
- All states have freedom of information laws that allow the public to access most data.
- Some states have laws governing information and health privacy.
- When an individual could be identified from de-identified data, that risk could prevent states from disaggregating data.
Overview and Objectives
During the COVID-19 pandemic, the authors wanted to understand how much leeway state health departments had to disaggregate data by race and ethnicity.
Hypothesis or Approach
The authors surveyed the laws of 10 states: California, Michigan, Nebraska, Nevada, New Jersey, New York, North Carolina, Ohio, Tennessee, and Texas.
How This Influences Change
During future emergencies like the COVID-19 pandemic, it will be important to understand what data states can share about the impact of the health emergency on specific populations.
Research: Go Deeper
Disaggregated data are essential to public health during routine times and during emergencies, including prevention and control of disease such as COVID-19. Health departments need to both collect and separate data for a population by components or characteristics, such as race and ethnicity, to identify, assess, and effectively address different impact and outcomes for particular groups. Health differences – as experienced by specific groups – do not show up when data collection relies solely on broad racial and ethnic categories.
Thus, data are needed for smaller groups, which more accurately reflect our ethnic and cultural diversity, to inform policy and target resources effectively. State and local health departments also have a responsibility to inform the public about the different impact of COVID-19 related to race and ethnicity, which includes release of data needed to inform and empower communities, their leaders, and the public in general.
This project focuses on the role of law in facilitating and limiting the collection and release by health departments of data that are disaggregated by race and ethnicity. To understand the authority of health departments to collect race and ethnicity data and whether there are legal barriers to their reporting it, we surveyed the law of ten states: California, Michigan, Nebraska, Nevada, New Jersey, New York, North Carolina, Ohio, Tennessee, and Texas. For these states, we also reviewed their obligations to share data, including limitations on health department release of disaggregated data, in response to requests made by the public pursuant to records access laws. We selected these 10 states based on three criteria. First, we incorporated states also being studied in related projects, especially UCLA’s priority states of Nevada, California, Michigan, and New York. Second, we wanted reasonable geographic variation. Third, we included states we knew or had reason to believe would be collecting disaggregated data.
The Network for Public Health Law, April 15, 2021
Research Team
This study and report was conducted and created by the following people:
- The Network for Public Health Law
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