Collaboration Needed for Race, Ethnicity Data Collection, Exchange

A multistakeholder approach is needed to improve race, ethnicity, and language (REL) data collection, validation, and exchange, according to an article published in Health Affairs,

While payer, provider, and state initiatives have improved REL data, greater collaboration across sectors would promote a sustainable data infrastructure to better identify health disparities, support coordinated interventions, and track community progress.

Researchers presented five areas that states or regions should focus on as they look to improve REL data efforts.

First, they noted that to build an equity-oriented data system, groups should follow best practices from successful multistakeholder efforts, such as engaging key stakeholders early on and building community support.

“Engaging with national and state partners is critical to promote buy-in; stakeholders want a path to deliver on REL data improvements that align with other industry and government initiatives to promote sustainability and support current efforts,” the authors wrote.

To begin, stakeholders should evaluate the current state of REL data and build the clinical and business case for improving these data systems.

“After level-setting on the state of REL data across organizations, the multistakeholder group and community coalitions can identify ways to improve REL data that everyone can align to and support,” they said.

The multistakeholder group should then improve data quality by agreeing on standard data collection and validation approaches.

“Patient-reported data are the gold standard for REL data collection and can correct the high rates of patients misclassified as White through staff-reported collection or some surname imputation approaches, which underestimates disparities,” the authors explained.

They suggested that to boost support for REL data improvement efforts, multi-stakeholder groups should create shared training and education for staff involved in data collection and community education resources.  

“Some healthcare workers remain skeptical about collecting and using REL data, which points to a need for consistent messaging across organizations,” the authors wrote. “Patients may understandably fear discrimination and decide against providing REL information.”

A coordinated, state-based campaign could help reinforce educational efforts, but other steps may be necessary to address discrimination and patient privacy concerns.

Additionally, the multi-stakeholder group should identify ways to give technical assistance to organizations that need implementation support.

To improve the usefulness of REL data, states, health plans, and providers can work to support better data sharing within and across organizations.

“Importantly, data governance can help these data exchange collaborations build trust by ensuring data are collected, used, and shared equitably,” the authors wrote.

“Engaging technical stakeholders can help streamline REL data formats, storage, and exchange across a market,” they continued. “Inconsistent data formats and quality in electronic health records (EHRs) can affect data sharing and validation across organizations, limiting coordinated communitywide and statewide disparity reduction efforts.”

In a systematic review of race and ethnicity EHR data, 66 percent of studies found incomplete race and ethnicity data in EHRs led to validity issues.

Next, the authors noted that stakeholders should coordinate data-informed interventions across stakeholders.

“REL data can highlight where inequities in care exist, identify priority areas for disparity reductions, and develop data-informed interventions,” they said. “Engaging a multistakeholder group through learning collaboratives can enhance the effectiveness by coordinating across health care, public health, and social service systems.”

Allina Health and Atrium Health have gained national acclaim for creating dashboards with REL filters to focus on specific processes and outcomes, such as hospice enrollment or hypertension measures.

Lastly, the article called for stakeholders to motivate change with equity-focused, value-based reimbursement models.

“Value-based payment models can incentivize continuous improvement in the collection and use of REL data by encouraging a focus on reducing disparities and allocating resources to advance equitable health outcomes,” the authors wrote.