Jazmin Evans became a health advocate because she remembers the challenges of being a patient.
The Philadelphia resident was diagnosed with chronic kidney disease during her senior year of high school in Ohio, and began “navigating this system very blind,” she told PA Local. In 2019, she learned her kidneys were completely failing, began dialysis, and was added to a transplant list.
Four years later, she was moved up on the priority list by three and a half years. Why? eGFR, a calculation of how well a patient’s kidneys work, had been taking race into account, and essentially overestimating the organs’ function in Black patients. Once the flaws in the test were acknowledged and the race factor was removed, Evans became one of 14,000 people nationwide whose waitlist positions were adjusted.
“Basically, they said that if my care had not been determined with this algorithm, I actually would have been on dialysis and the transplant list in 2015 as opposed to 2019,” Evans explained.
The whole situation “got the wheels in my head turning a little bit,” said Evans, who recently completed a PhD in African American studies at Temple University. She’d already been giving people a look into her life as a “young person trying to live a quality life while also managing their health” on social media, so she used her platform to explain how the formula had impacted her and other Black patients.
Evans also shared her story with outlets like CNN, Good Morning America, and the Associated Press.
“I just wanted to basically educate people about what was going on,” Evans told PA Local. “Making sure that if they had not heard about this, that they would hear about it from me.”
Evans got her transplant later in 2023. She’s continued to speak out about racial inequities in healthcare. As a scholar, she’s studied how these disparities can be undone, and as an advocate, she’s done grassroots work in Philadelphia to increase access to the “basic human right that is health.” Evans’ work earned her a nomination for Spotlight PA’s PA Local Heroes series, a monthly feature sponsored by Ballard Spahr.
After Evans learned about the eGFR’s racial bias, she pivoted her dissertation topic. She embarked on a project she called “For Us, But Not Without Us,” examining how patients could “have more of a say in how clinical algorithms are not only built,” but “how they’re implemented as well.”
Algorithms are increasingly part of medical care, and research has found that the data used to program them can paint Black and Latino patients with a broad, inaccurate brush.
“A lot of patients do kind of have somewhat of a say within these passive, advisory positions,” Evans said. “But I wanted to push that even further to say, ‘What does it look like when these patients actually have a seat at the table, and have authority or decision-making rights over the way that these algorithms are actually used?’”
Evans has continued her academic research, and hopes to design a study that tests patient-influenced processes and systems.
Outside of her scholarship, Evans organizes community-level programs targeting access. The closure of Hahnemann University Hospital in 2019 and conversations with patients who’ve faced obstacles to medical care underscored the urgency of the issue for her.
Last year, she launched We Got Us, a series of pop-ups intended to bring free and low-cost healthcare to Philadelphians. The goal, Evans said, is to provide “a low lift for people” who may be struggling to find a physician who’s accepting new patients, securing transportation to their doctor’s office, or affording insurance or co-pays.
“We didn’t want these barriers to stop people from being able to live healthy, quality lives,” Evans said. “And so that’s where we wanted to kind of do something that could mind the gap in the meantime, while continuing to work towards the larger picture as well.”
She decides the programming based on community input, or shapes it around “the trends that we’ve been seeing.” And her efforts to reach people aren’t always traditional.
One example: Upon reading that Philadelphia has the second-highest rate of sexually transmitted infections among U.S. cities, Evans partnered with the local healthcare nonprofit Bebashi to host a pay-what-you-wish singles mixer. In addition to rapid STI screenings, the event featured “Pitch a Friend” presentations.
Keeping things fun and welcoming is part of the goal.
“A lot of times, these community health events — they’re really sterile in a lot of ways … they’re not really, you know, quote-unquote ‘sexy,’” Evans said. “So we try to find different events or activities to pair with the screenings.”
To that end, We Got Us has also held a yoga and wellness day complete with mammograms and HPV testing, and a run club meetup featuring prostate screenings.
The initiative has helped over 1,800 Philadelphians since it started, Evans said.
“Whenever we talk about this huge revolutionary change within medicine, those things are going to happen in increments, right? It’s going to take a while for these things to come into fruition,” Evans said of her academic research. “However, there are people who are in need right now.”