December 2024

In early 2022, Children’s Mercy Research Institute (CMRI) embarked on a transformative journey as part of the Kansas City Health Equity Learning and Action Network (LAN). The LAN includes a CEO roundtable and a learning phase followed by an action phase, girded by a shared agenda to markedly change systems, policies, and structures that perpetuate health inequity based on race and ethnicity. The LAN action teams address everything from birth equity as it relates to Black maternal and infant health to equitable measurement of kidney disease acuity, treatment options, and transplant referrals for Black patients—to name just two.

As a key participant in the LAN, CMRI leveraged the network’s shared resources to refine their equity-focused practices. Their efforts emphasized examining data collection processes to identify systemic gaps and create actionable solutions tailored to pediatric care. By collaborating with other LAN members, CMRI contributed to a collective mission to dismantle structural inequities in health care delivery. This work aligns with their goal to ensure that all patients and families receive care rooted in cultural understanding and equity-driven outcomes.

The CMRI’s action team focus was improving the accuracy and completeness of race, ethnicity, and language (REL) data collection across their pediatric practices. “Our project focused on reaching out and connecting with all 44 of those community practices and supporting their improvement of capturing and collecting race, ethnicity, and language data for their patients and families,” explained Jessi Johnson, director of equity and diversity at CMRI.

This initiative wasn’t just about gathering numbers; it was about addressing systemic barriers that prevent equitable pediatric health care and creating a foundation for meaningful action. Without accurate and representative information, disparities in health outcomes can remain hidden, leaving underserved populations without the tailored interventions they need. Improving REL data was a critical step in CMRI’s broader commitment to excellence and innovation in pediatric health care. “We knew that without a complete data set, we couldn’t identify where disparities existed or take action to address them,” Johnson added.

For CMRI, the LAN offered both a chance to lead and an opportunity to learn. “I think they were looking to us with our expertise for race, ethnicity, and language because that was something we were able to contribute—bringing some of that experience, knowledge, and awareness,” Johnson shared. At the same time, CMRI recognized the importance of listening to and learning from smaller organizations within the LAN. “We have such a reputation in our community that is very specific and different,” she explained. “But I think the conversations we had as a group on race were essential to the work we’re doing.”

CMRI encountered significant challenges due to the varied characteristics of their pediatric practices. “Our project, I think, was really interesting, especially in the community practices [which] are located all over the Kansas City Metro. So some of them are considered critical areas in the urban core. Some of them are in the suburban areas. So the diversity amongst the practices was very high,” Johnson explained. These differences in location, resources, and workflows made it challenging to apply a uniform approach and find success across the board. Tailoring strategies to each practice while maintaining consistency across the project required an adaptable and patient-centered approach.

The learning phase of the LAN offered valuable insights into culturally relevant practices. Johnson described how partnerships with organizations like El Centro and Uzazi Village reshaped their perspectives. “They gave us cultural insight and proximity to issues that we hadn’t encountered before. We spent an entire session on language, exploring its nuances and how it reflects sensitivity and respect for the communities we serve. That experience shifted how we think about our work,” she said. This cultural awareness played a crucial role in shaping staff training sessions designed to improve the quality of REL data collection.

One of the biggest challenges was achieving consistency in data collection. Without a unified system, REL data was often incomplete or inconsistently recorded, making it difficult to identify and address disparities. Mehwish Ahmed, data analyst in the office of equity & diversity at Children’s Mercy Kansas City, explained their approach: “We asked practices to have four things implemented in their organization. One was to have a minimum set of REL options. One was to make this option required. Then, one was to train the staff, and a fourth was to have the best practices for collecting REL data.” These strategies ensured a structured and consistent approach, helping practices improve data collection processes and maintain long-term success.

While some practices embraced these changes quickly, others faced resource constraints that delayed implementation. “They understood the issue, but the lack of resources often made it harder to implement the changes we recommended,” Ahmed shared. For CMRI, overcoming these barriers required not only persistence but also collaboration. The project’s success depended on establishing trust with staff and ensuring they had the tools to adapt.

CMRI’s collaboration with the LAN also facilitated new partnerships that continue to shape their work. Johnson noted a significant relationship with University Health. “We meet regularly now to discuss issues within our health systems and collaborate on disparities much larger than any one organization can solve. The LAN gave us the opportunity to think outside the box and work collectively on these challenges,” she said. These partnerships have expanded the scope of their equity efforts and fostered innovative approaches to addressing disparities.

The professional development opportunities provided by the LAN also contributed to the team’s success. “The structure and rigor of the professional development sessions were invaluable,” Johnson shared. “It complemented the skills we brought into the project and gave us a framework to take our work to the next level.”

By increasing REL data fill rates—the percentage of patient records that include complete and accurate race, ethnicity, and language information—to 90% for race, 85% for ethnicity, and 100% for language, CMRI not only met their project goals but set the stage for using this data to address disparities. Johnson and Ahmed expressed pride in how far their project has come while acknowledging that the journey doesn’t end here. “Now that the infrastructure is in place, we can confidently start identifying disparities and exploring interventions that will address them. This phase was about laying the groundwork, and I believe it sets us up for impactful results,” Johnson said. Sharing their findings with other pediatric practices and continuing to refine their approach remains a priority.

The LAN experience has also strengthened CMRI’s connections within the Kansas City community, reinforcing the importance of working collectively to advance health equity. “It helps you stay motivated and feel a sense of security,” Johnson shared. “This work isn’t always popular, but being part of a community that’s in it together makes all the difference.”

Looking ahead, CMRI plans to continue leveraging the data they’ve collected to identify disparities and implement targeted interventions. The lessons learned through their LAN participation have laid the groundwork for ongoing improvements in equity-centered, culturally responsive pediatric health care. “Through this experience, we remain ever more committed to advancing equitable research practices and ensuring that every patient and family we serve is seen, valued, and supported,” Johnson said.