Using Data to Humanize Health Care

Combining empathy with more-inclusive patient data could help eliminate widening health disparities, said statistician and author Talithia Williams

When Talithia Williams was a beginning doctoral student at Rice University, she was struck by a feeling she hadn’t experienced previously. She had earned degrees in mathematics from two historically Black institutions, Spelman College and Howard University, but at Rice she was suddenly less sure of herself during classroom discussions.

“I was the only woman and the only Black person in my first-year cohort,” she told an audience at Tufts University School of Engineering on February 15. “And so, the issue of belonging and inclusion really hit home.” 

Williams’s solution was to email her classmates. “Nobody was flocking to me and saying, ‘We’re going to do homework together.’ They were nice guys, they just weren’t eager to find the one woman and the one Black person to join their group.” 

After successfully organizing the first study session, Williams worked feverishly on math problems beforehand. By the third week, she said, she’d become a valued member of the group, and more confident in her new setting.

Williams, whose popular TED talk, “Owning Your Body’s Data,” emphasizes the benefits of keeping track of personal health statistics, has continued to overcome barriers in her career, becoming the first Black woman to achieve tenure at Harvey Mudd College. The author of Power in Numbers: Rebel Women in Mathematics, Williams was co-host of the PBS series NOVA Wonders.

Here are three highlights from Williams’s visit as part of the Tisch College Solomont Speaker Series and School of Engineering DIEJ Colloquium, where she discussed the ways in which communities are harnessing the power of data to address growing health disparities.

The importance of individual and collective health data is gaining recognition.

According to the National Academy of Medicine, Williams said, collecting data on variables such as the leading causes of death among racial groups in the U.S. is essential to the concept of a “learning health system,” one in which data from patients’ experiences is leveraged to help clinicians, families, and administrators meaningfully improve health and health equity.

“Data really came to the forefront of the health community with COVID-19,” Williams said. “The Johns Hopkins dashboard gave everybody complete access to COVID data. In addition to that, we shared our own data in a way that we never had before. You probably posted a picture of yourself with a Band-Aid, saying ‘I got my first shot, I got my second shot.’ Nobody poses when they get a mammogram or a colonoscopy, right? We were just excited to share our health data in a way that we hadn’t before, as a country and as a world.”

“We have to appreciate where the data comes from and who it comes from. And we have to mindfully collect and understand that data, keeping in mind data privacy, and also different cultural norms.”

Building patient trust remains a challenge.

“Even though we had access to more data, we had limited access from communities of color,” said Williams. “And there was also a greater need for a trauma-informed social justice response, because communities were reluctant to even take the vaccine for different reasons.” 

Williams referred to the Tuskegee Syphilis Study, in which hundreds of Black men were left untreated for the disease despite the availability of antibiotics. 

“When I was talking to my mother about getting her COVID vaccine, she said, ‘I don’t know, you remember Tuskegee? How is COVID different?’ And so for many communities, especially Black communities, there was really a hesitancy to trust the government again.”

Ensure that young people of all backgrounds grow up comfortable with data. 

“How we build up the future is training the next generation,” said Williams, who is treasurer for The EDGE Program. “Part of the reluctance in society about the [COVID-19] vaccine is also because of how we traditionally treated people in STEM.”

“If you think about your parents and your grandparents, especially the women, they were not encouraged to do math and science. … As that generation has come up, and we say, ‘Here’s a vaccine, we want you to take it,’ they don’t trust it, right? ‘Because I was not a part of the science, I wasn’t a part of the mathematical decision making. I’ve been pushed out of those disciplines.’”

“So one way I think we correct that is by helping the next generation see themselves in the sciences, and be a part of the sciences, so that they can be at the table when these decisions are made. For the past 12 years, we’ve been doing a STEM conference for girls of color in Southern California. It’s not that I’m trying to convert them all to engineering majors or mathematicians. I just need them to know that it’s an option for them, no matter what they do. To know that they’re welcome in this space, however they want to engage.”

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