Leveraging Data to Improve Equity in Serious Illness Care

On May 12, C-TAC hosted the 2021 National Policy Forum. The second panel “How Data and Policy Can Drive Access for Underserved Populations” featured Darci Graves from the Office of Minority Health at CMS, Debra A. Flores, Senior Vice President at Kaiser Permanente, and was moderated by Marisette Hasan, President & CEO at The Carolinas Center for Hospice and End of Life Care.  

Background  

Despite decades of effort, we have failed to achieve equity in healthcare, a fact that has been underscored by the disparate impacts of the COVID pandemic. Fortunately, we are learning more about ways to address these inequities, especially through the use of data. Whether we are looking at access and quality issues facing racial and ethnic minorities, people with disabilities, rural populations, or other disadvantaged groups, capturing and using data is key to progress. 

Key Takeaways 

• We cannot do anything in health equity without proper data. We need to (1) collect or find data, (2) analyze data, and (3) use data. Ultimately, that data needs to be connected to the patient’s story and the clinical encounter. 
• Systemic racism is real and affects the health of communities. We must identify it and abolish it. 
• Providers should actively empower patients at every step of care. Otherwise, patients who are skilled at self-advocacy will receive much better care than patients without those skills, impacting equity and quality of care. 

• Every touchpoint—annual wellness checkups, COVID vaccine appointments, etc.—is an opportunity to engage patients about their health and how to be effective self-advocates. 

Personal Insights 

• Darci, a breast cancer survivor, has experienced gaps in clinician data use first-hand. Her radiologist suggested a wait-and-see approach to a suspicious mammogram. Darci spoke up for herself and questioned his advice, “Even with my family history?” She realized he had not reviewed her chart, which documented that many of her relatives had had breast cancer, and that she needed more testing immediately. Clinicians need to read and review patient data before they see patients and offer clinical recommendations. 
• Debra, a healthcare executive, explains “When we talk about the maternal mortality rate among African American women, that’s real, and it could have been me.” Nine months into her first pregnancy, Debra rushed to the hospital bleeding, terrified, and needing to deliver her stillborn son. But the busy nurses dismissed her and left her sitting in the crowded waiting room. After her multiple requests for help from the nurses were ignored, she phoned her coworkers—this hospital was part of the system where she worked. As soon as the staff learned of her VIP status, a room was found and she was seen immediately by clinicians. Every patient deserves that level of care. Debra on concludes, that even though clinicians are busy, “If you can do it for a VIP, you can do it for everyone.” 
• Marisette, an RN, found that she was not able to get her mother the best care until she brought her into the clinic where Marisette worked, again demonstrating that patients with a personal relationship with providers and healthcare savvy receive better care than those without these assets. Marisette argues that “We have to empower folks to know that they CAN ask questions, they CAN advocate for more, and it is their RIGHT to be able to do that.” 

Tools for Using Data to Improve Equity 

The Office of Minority Health (OMH) at CMS exists to lead the advancement and integration of health equity, and offers a variety of tools to help healthcare systems and providers improve the equity and quality of care. 

• For organizations just starting to consider addressing equity issues, this Disparities Impact Statement tool can be used to organize a workplan and set a strategy for achieving health equity. 
• For state and local leaders, health plans, and hospital systems, the Mapping Medicare Disparities Tool provides data on health outcomes, utilization, and spending for different racial and ethnic groups within specific geographies, and can be a starting point for understanding disparities in your community. 
• For organizations ready to build their own data capabilities, OMH provides a guide on standardized demographic and language data collection. Detailed recommendations are providers for capturing race, ethnicity, language, and disability data.