The moment is now: How payers can help lay the groundwork for effective demographic data collection

As payers look to address health disparities post-pandemic and CMS shifts toward measuring health equity compliance, the insurance industry is laying the groundwork to improve demographic data collection from its members.

Some challenges with collecting that data in the past have included legal and privacy concerns, reluctance from individuals to self-report, hesitancy from healthcare professionals to gather race and ethnicity data, and a lack of financial incentives or program requirements to do so. 

The issue is long-standing and widespread — fewer than 25 percent of commercial health plans had race data for half their members in 2019, and some states had even banned insurers from asking members about their race up until this year.

But a new report commissioned by Elevance Health says no federal or state laws exist any longer that prevent group health plans from collecting race and ethnicity data for a permitted purpose, such as health equity. The authors write that efforts need to be made to assure healthcare organizations about their legal ability to collect that data.

The report includes input from commercial payers, providers, employers and researchers to provide a road map on how to begin an industrywide effort to collect, safeguard and utilize members' data to find disparities in care and help employers make better decisions about their benefits.

To start, payers must first inform policyholders about why they even want this data to begin with. Members are concerned their data will be used to discriminate against them, and they want to know that data won't fall into the wrong hands. The report found 59 percent of individuals are concerned about sharing race and ethnicity data with any healthcare organization over fears the data will be misused or sold to others without their consent.

Perhaps most important is the need for modernization of data collection practices. In April, the Blue Cross Blue Shield Association released a paper calling on the healthcare system to develop and adopt national industry standards for demographic data collection. The Elevance report makes the same suggestion, writing that "more inclusive standards for self-reported, voluntary race and ethnicity identification" are needed to reflect real identities.

For some however, like Christie Teigland, PhD, the data and tools to improve health equity already exists, and payers simply need to take advantage of it.

Dr. Teigland is vice president of research science and advanced analytics at Inovalon, a healthcare technology company that provides real-time data and analytics to improve care outcomes. She says one of the problems surrounding the collection of demographic data is that for a long time, there wasn't any single data source for social risk factors like race, ethnicity and income level. 

"The pandemic has really underscored how big these disparities are and the importance of addressing them," Dr. Teigland told Becker's. "The bottom line is, you have to have the data to figure out where you have the issues."

Dr. Teigland works behind the scenes on the Inovalon ONE Platform, which she says not only fills in data gaps to allow payers to see where care disparities exist, but also helps them meet new CMS requirements for Healthcare Effectiveness Data and Information Set measures. Dr. Teigland and her team are already working to show payers how well they'll perform under new measures.

The ONE Platform sources from public records to credit card data and everything in between to produce a granular-level insight that covers "virtually 100 percent of Americans," according to Dr. Teigland. It can be enabled now within the company's quality analytics and measurement software, QSI-XL. 

"The potential is very, very large," she said.

Inovalon has worked with Humana to develop a health equity index that examines measures that may be affected by things like race, ethnicity, income or disability status. Those measures can be applied to a specific population like Medicare Advantage and then stratified by demographic data to reveal disparities. Dr. Teigland says Humana is using these insights during contract negotiations and at the individual provider level.  

"There's a big effort to identify those people, reach out to those people and reengage those people to make sure they're getting the proper medications, treatments and testing and so they don't appear in the ER down the road," she said. "We're really trying to get ahead of the curve."

Another large payer that utilized the platform previously did not know the race of over 41 percent of its members. Once the company utilized Inovalon's data, it reduced that number to 0.8 percent.

For payers that aren't turning to advanced analytics to fill their own data gaps, the Elevance report is clear that four actions around data collection should be taken immediately: cross-sector collaboration must begin, payers need to be clear that reporting is voluntary, data collectors should receive the resources they need, and data security guidelines across the public and private sectors must begin to be developed.

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