Modernize data standards to address health disparities

As Health Disparities Persist in Employer-Sponsored Insurance, Data Collection Continues to Hamstring Companies in Tackling Inequities?

By Katherine Bobroske , Rivka Friedman , Orriel Richardson

At a moment when the U.S. health system is focused on taking decisive action to address longstanding racial inequities, health disparities in employer-sponsored insurance (ESI) – the country’s largest insurance program covering 160 million lives – have remained largely under the radar. In one of the first comprehensive assessments of public data on enrollees with ESI, Morgan Health and NORC at the University of Chicago found significant gaps in diagnosis and disease management across race and ethnicity, sexual orientation, and income levels, including wide variation in health outcomes related to blood pressure, diabetes, obesity, behavioral health and substance use, and maternal health measures.

It’s a stark reality to consider, given that employers spend roughly $1 trillion on their employees’ health care. And while employers increasingly are developing strategies to address health disparities, limitations on the collection and use of health and demographic data are a persistent deterrent.

We see collecting and using reliable race and ethnicity data as a key element of Morgan Health’s work to improve the quality and equity of health care for 摩根大通 employees and the broader ESI market. For many large employers, especially self-funded employer health plans, there are complex issues involved to developing a data-driven approach to achieve these goals.

We see collecting and using reliable race and ethnicity data as a key element of Morgan Health’s work to improve the quality and equity of health care.

Historically, most employers have not collected routine data on race, gender or sexual identity, rather it’s been health plans that captured this information as part of wellness assessments and other clinical programs. As a result, collection rates have consistently been low in the commercial market. Industry wide, less than 25 percent of commercial health plans have race and ethnicity data on most of their members, and specific carriers have reported less than 10 percent of race and ethnicity data on their members.

Lack of uptake in meaningful data collection is also a byproduct of complex state and federal requirements, particularly when it comes to the Health Insurance Portability and Accountability Act (HIPAA). Individually identifiable health equity data – race, gender, ethnicity – are generally considered protected health information under HIPAA, meaning that if a health plan collects this data, the law directs how such information can be used or disclosed.

Since HIPAA was enacted in the 1990s, the law hasn’t evolved to permit meaningful transformation in the health equity space. For a health plan or provider attempting to analyze medical claims data for health equity, HIPAA can pose a roadblock. If health plans had a roadmap to collection, access and use of patient data to understand and share trends and identify gaps, this space may move with a meaningful pace. But the current regulatory environment requires close study of various levels of law and detailed notices to patients that aren’t always easy to absorb.

Through our own experience navigating the complex data landscape, coupled with insight from other leading companies and researchers, we have identified tangible steps employers and their health plans can take to identify, access and appropriately use these data to address health disparities.

Do the due diligence

First, employers focused on identifying health equity disparities should do the due diligence to have a clear picture of the laws, rules, and internal and external controls in place prior to accessing employees’ data. Employers may also need to consider investments into internal data infrastructure, security, training and governance processes to support the level of analyses needed to improve health equity in an evidence-based way. This isn’t for the faint of heart. At 摩根大通 , our legal, data and technology teams dedicate significant time and resources to build the infrastructure and controls needed to manage and protect such data.

Earn employees' trust

Employers and their health plans must also earn and maintain employees’ trust by committing to use their personal data for the sole purpose of improving health care. Effective controls and transparency, including through clear terms and conditions, should increase employee confidence that sensitive data are appropriately accessed and used.

Companies with track records of implementing diversity initiatives that simply “check a box” are unlikely to garner trust that sensitive data will be used productively. To make good use of these data for health equity, employer and their health plans should take a “listen-first” approach with their employees, enabling their health equity strategy to drive toward outcomes that matter most.

That context is critical to advancing a more equitable approach to care delivery. Employees have numerous factors that contribute to their health – from the environment where they grew up, their education, wealth, nutritional habits, and personal relationships – and employer health plans should invest in understanding these social drivers when considering solutions. Through surveys and focus groups, employers and their health plans can identify root causes of observed health disparities, build trust that employees’ needs are understood, and pursue solutions and partnerships that acknowledge and address the root causes of inequity.

Advance meaningful policy reform

Finally, the federal government has a role in making data insights more actionable and measurable for both the public and private sectors. The work underway from the Centers for Medicare & Medicaid Services in establishing a long-term framework for tackling health equity provides a meaningful starting point but will only give us a partial roadmap for addressing these challenges nationwide. Updated standards from the federal government will encourage private employer health plans to align their standards for defining and capturing race and ethnicity data.

Policymakers should move expeditiously to update race and ethnicity data standards to facilitate consistent collection and reporting requirements and a clear understanding of disparities across public and private programs. Additionally, members of Congress should collaborate with data experts to identify areas where updates to the HIPAA statute can modernize the nation’s health data privacy and sharing framework to maximize efficiency without compromising security.

Advancing a more equitable health system, and by extension, a healthier and stronger workforce, requires employers and health plans to carefully consider their approach to data collection and analysis. By increasing transparency and putting the right safeguards in place to protect employees’ demographic and health care information, employers and health plans can safely and appropriately use that data to identify their employees’ greatest needs and drive meaningful change in closing the country’s health gaps.