The color of your skin or the ZIP code you’re from shouldn’t determine the quality of care you receive, your ability to access care or the likelihood you’ll develop a disease or die a preventable death. But in the United States, that’s what’s happening.
Without the right data, it’s hard to quantify the extent of health disparities impacting the health and well-being of communities across race and ethnicity, sexual orientation, gender identity and socioeconomic status.
Health disparities refer to the differences in the prevalence of disease and the opportunity to live the healthiest life possible. Those differences are driven by many factors and often underpinned by structural racism.
Health disparities are unacceptable
Examples of health disparities in the U.S. are legion: Black mothers are more than three times as likely to die from childbirth-related complications than White mothers. Hispanic adults are 70% more likely to be diagnosed with diabetes than non-Hispanic White adults. Native Americans have significantly lower life expectancies, especially in some regions of the country, than White people. These differences are unacceptable. Better, more actionable data can help inform not only where health disparities and care gaps exist, but also the best strategies for addressing them and driving better outcomes.
An industry-leading blueprint for better data to address health disparities
As part of our National Health Equity Strategy to confront racial health disparities, Blue Cross and Blue Shield (BCBS) companies have a clear plan for getting the data needed to accelerate meaningful change. It calls for more robust data, common industry standards for collecting data and the ethical and transparent use of data. Following are highlights from our thought leadership paper, The Ethical and Transparent Use of Data to Reduce Health Disparities.
Meaningful data can help uncover issues and target resources where they’re needed
Current data about patients’ race, ethnicity, language (REL) and social needs are spotty. The availability of that data varies across systems. The industry needs:
- Higher quality data derived from a bigger sample of the population, consistent from one system to the next and provided directly by a patient, not a set of calculations.
- More granular data about significant cultural or geographic differences among populations and individuals.
- Disaggregated data that goes beyond the standard categories of White, Black or African American, American Indian or Alaska Native, Asian and Native Hawaiian or Other Pacific Islander. Those categories are too broad to allow us to understand health care issues specific to subpopulations.
- Continuously collected and updated data to help monitor trends.
- Comprehensive data not just about REL, but also about their social needs, sexual orientation and gender identity (SOGI).
National data standards can better serve patients and unite the health care ecosystem
Health care leaders must collaborate to ensure the data needed to measure and address those disparities is standardized across all systems. Without standards, it will be difficult to quantify progress or spot trends. Also, how questions about a patient’s data are asked should be standardized, because the way a question is framed can lead to wide variations in how it’s answered.
But standardizing the data we collect and how we collect it isn’t enough. Health leaders must also collaborate to ensure health care technology systems can communicate with each other. BCBS companies are leaders and several industry groups are developing the tools we need to achieve this interoperability.
Data collection must be ethical and transparent
The best source of patient data is the patient. But patients may, understandably, lack trust in the institution asking for that data. To build trust, we believe health care companies must:
- Be transparent about how they plan to use data.
- Use this data to improve patients’ health.
- Safeguard data.
- Never use data to discriminate.
- Provide patients with access to their own data.
Making a call to action
BCBS companies are already collaborating across the health care system to develop data collection standards for REL and SOGI. We will continue our work with the Gravity Project to standardize the collection of data around a patient’s social needs. And we commit to being transparent about how we plan to securely collect and review patient data.
But the journey to health equity takes all of us. We call on all stakeholders to:
- Develop and adopt data collection and exchange standards across REL and SOGI data sets while continuing to build standardization for social needs data through the Gravity Project.
- Develop and adopt standards for sound imputation methods and use of health equity data.
- Learn from patients how best to collect data on REL, SOGI and social needs and provide transparency to patients on how such data will be used.
It will take time to achieve these goals. But we’re committed to collaborating with the health care industry and policymakers to help lead the way toward a more equitable future.