Public health data serve as the foundation for policies, resource allocation, and community well-being. Yet, the accuracy and inclusivity of such data remain deeply flawed, perpetuating health inequities that disproportionately affect marginalized communities. Chicago is not exempt from the faults of bad data, and its public health disparities continue to be stark and persistent.
While public health failures have always existed in Chicago, COVID-19 drew specific public attention to the lack of transparency and the pandemic’s disproportionate impact on vulnerable communities. In 2022, the Illinois Department of Public Health and the Cook County Medical Examiner’s Office stopped publishing data on COVID-19 outbreaks, concealing crucial information about the virus’s impact on vulnerable populations. The omitted data involved key trends, such as the disproportionate mortality rates in Black and Latinx populations, who were twice as likely to die from COVID-19 as White residents. Without access to reliable data, community leaders and policymakers were left ill-equipped to address the pandemic’s toll. The consequences of these data shortfalls are not merely statistical; they are measured in lives lost and communities underserved.
To help address these inequities, more than a decade ago the Chicago Department of Public Health (CDPH) launched the Healthy Chicago Survey (HCS). The goal of the survey is to gather data on access to health services, mental health, neighborhood conditions, and quality of life. Although well-intentioned, the survey has met with challenges. The survey was communicated by mail to randomly selected addresses, originally consisted of 200 questions, and required about two hours to complete. Participants were incentivized with a $10 or $20 gift card, depending on whether the survey was mailed back or completed online.
This approach introduces potential biases in response rates, volunteer participation, and accessibility. First, the reliance on mail excludes those without stable housing or reliable mail access, thereby ignoring some of the most vulnerable Chicagoans. Second, the survey’s length and compensation may deter participation from those with limited time or resources. Third, individuals could not volunteer to participate (to maintain the randomness of the sample); only those randomly selected had the opportunity to provide input. Finally, the survey failed to adequately address language barriers, further marginalizing non-English-speaking residents.
By collecting data in this way, Chicago is left with a dataset that cannot fully represent Chicago’s diverse population. If the data used to inform public health policies excludes entire segments of the community, how can those policies be expected to address the needs of all Chicagoans? Instead, they risk enabling the same problems they aim to resolve.
Consider the life expectancy gap in Chicago. A white man in Logan Square can expect to live 10 years longer than a Black man in Englewood. This stark disparity is the product of systemic inequities in housing, education, healthcare access, and economic opportunity. Yet, without inclusive and accurate data, efforts to close this gap are unlikely to succeed.
The inaccessibility of public health data compounds the issue. To access data from the Healthy Chicago Survey, one must submit a formal request via the CDPH’s Data Request and Data Feedback Form. This process creates unnecessary barriers, particularly for community leaders, activists, and local policymakers who may lack the time, resources, or expertise to navigate bureaucratic hurdles. In addition, even when data are available, the data often lack the contextual analysis needed to translate raw numbers into actionable insights When the data show that 65% of Chicagoans report a good quality of life, this information leaves out crucial context about which communities are thriving or struggling (Chicago Department of Public Health 2024).
To address these challenges, Chicago must prioritize transparency and inclusivity in its data collection practices. The city should implement more accessible methods for gathering input, such as in-person interviews, online surveys, and collaborations with community organizations. These strategies can help ensure that the voices of marginalized communities are represented. Public health data must also be made freely available and accompanied by clear, actionable analyses. Policymakers should ensure that their decisions reflect the lived experiences of those most impacted by health disparities.
It is not just policymakers who need to take action. The public has a role in holding institutions accountable for how they collect and present data. When we encounter statistics, we must ask who is included and who is excluded. What do these numbers really tell us about structural inequities in our city? If Chicago is to truly address its health disparities, we must demand better data, better policies, and better accountability. Without accurate and inclusive data, the gaps in our public health statistics will continue to reflect the gaps in our society.