CHICAGO – Today, the Blue Cross Blue Shield Association (BCBSA) and Blue Cross and Blue Shield (BCBS) companies released a thought leadership paper calling on the health care system to develop and adopt national industry standards for health equity data collection to help meaningfully address health disparities and advance health equity.

The paper, The Ethical and Transparent Use of Data to Reduce Health Disparities, identifies ways to build universal data collection standards so the industry can better understand the root causes of health disparities, who is impacted and how, and what steps can be taken to address the disparities and create long-term change. The paper also emphasizes the importance of transparency, explaining why patient data is being securely collected and how data will be used to help guide and improve care.

Significant health inequities plague the U.S. health care system, impacting the health and well-being of communities across race and ethnicity, sexual orientation, gender identity and socioeconomic status. The many causes for these inequities – including structural inequalities in the health care system – can be difficult to quantify, which is why BCBS companies are calling for action.

“Every data point is a person with a story,” said Sean Robbins, executive vice president, external affairs for BCBSA. “BCBSA and BCBS companies have an opportunity – and responsibility – to help ensure data accurately and equitably represents every patient we serve. We’re eager to work with policymakers and colleagues across the industry to develop and adopt common industry data standards in pursuit of our shared goal to build a more equitable health care system.”

The paper outlines how the health care system can develop, build and adopt data collection standards across race, ethnicity and language (REL), sexual orientation and gender identity (SOGI) and social determinants of health (SDoH) data sets, noting there should also be standards on data imputation and appropriate use cases for that process. It’s important that more robust data is collected, including from ZIP codes, allowing for greater analysis and development of solutions to address disparities.

“The pandemic reiterated how powerful data can be in identifying gaps in care, generating new solutions and helping meet people where they are,” said Kari Hedges, senior vice president of market solutions at BCBSA. “We’ve also learned how difficult it is to make targeted improvements to reduce health disparities without quality data. To make a meaningful difference, we need the full force of the industry. Alignment on standards for collection and use of quality health equity data is a critical step forward in our collective journey to health equity.”

The call to action to standardize the collection of REL, SOGI and SDoH data is part of BCBSA’s National Health Equity Strategy, which aims to reduce racial health disparities and advance health equity in the U.S. health care system.