3 Ways We’re Making Chronic Disease Data More Equitable

The Data Modernization Initiative is an opportunity to tap into both health data and non-health data to better identify and address the drivers of health inequities. Foundational to our work is that we want to not only understand the causes of disease, but the causes of health.

We often focus our data on when health has gone wrong. We track the outcomes of illnesses. We look at why people are hospitalized, or why they die. These are critical, of course, but we also want to use our data to promote real thriving and well-being for all people, populations, and communities. We want to learn what factors might help stop people from getting sick in the first place – especially for those who are disproportionately impacted by risk factors that lead to poor health outcomes.

CDC’s National Center for Chronic Disease Prevention has been at the forefront of applying new technologies and approaches that support better data for all. Below are three examples of what we’ve been working on in 2022.

• Connecting measures of social determinants of health and chronic diseases. We’ve added modules that track topics like food and housing insecurity, transportation, social support, well-being, and economic stability into our surveillance systems for behavioral risk factors and pregnancy risk. Modules have also focused in on root causes of health inequity, such as racism. We’ve also added more modules into the PLACES system, which is a collaboration with the Robert Wood Johnson and CDC Foundations to provide health data at the very local level. By combining data related to SDOH measures with community-level chronic disease measures, we can broaden the usefulness of each of these types of data in understanding community health. 

• Expanding the use of electronic health record data through multi-sector partnerships. The healthcare delivery system has increased focus on screening for social needs during patient visits. This means that data on housing, food access, transportation, and other social needs is becoming more available in electronic health records (EHRs). The Social Determinants of Health Data Exchange for Chronic Disease Prevention Initiative is a collaborative effort to expand the collection, use, and exchange of social needs data from EHRs. CDC has connected with advisors working with the Gravity Project to develop recommendations around these data, and with partners to implement use cases for public health.

• Fostering electronic data exchange for social referrals to help people with diabetes and other chronic diseases. We’re enhancing how health information is exchanged between health systems and community service organizations who address chronic health conditions – for example, lifestyle change programs and diabetes self-management programs. Improving how data travels in both directions will help health systems evaluate the impact of different community programs on people’s health. At the same time, it will support community-based organization efforts when making the case for clinically meaningful and cost-effective programs.

CDC recognizes the importance of bridging the gap between the data we have now and the data we need to fully understand and address the drivers of health inequities. Thanks to the collaborative efforts of our chronic disease experts and our partners, we’re modernizing data collection and use in ways that can help people in communities thrive.