Limited data on social determinants of health, provider bias lead to transplant inequity

SCOTTSDALE, Ariz. — Inequities in transplantation can be attributed to limited data on patients’ social determinants of health and provider bias, according to a presenter at the Cutting Edge of Transplantation Summit.

“There is something that we can do to achieve equity, and that involves creating custom tools and identifying what is it that is preventing people from achieving access for all,” Lauren Nephew, MD, MA, MSCE, from Indiana University School of Medicine, said in the presentation. “To do that, we have to outline the gaps in our knowledge.”

For example, although researchers have made approximations about the number of people with end-stage diseases who are in need of transplantation, there are no confirmed statistics on this.

According to Nephew, researchers do not have in-depth information about patients evaluated for transplantation vs. patients who need transplantation.

“It's hard to be able to compare what vulnerable groups don't match up or who aren’t achieving access if you don't even know the numbers of patients who actually have the problem that you want to treat,” Nephew said.

Additionally, it is unknown how many patients in need of a transplantation are able to complete the complex process, and data regarding these patients’ social determinants of health have not been systematically collected.

Nephew said data regarding provider bias are also missing. While it is known that providers can have implicit bias, such biases have yet to be extensively explored in studies. Consequently, the impact of these biases on transplantation equity is unknown.

Nephew referenced a study that investigated racial bias in 46 randomized providers regarding heart transplantation. Results revealed providers were more likely to critique the appearance of women than men when evaluating them for candidacy. Additionally, they regarded Black patients as sicker than patients who were not Black, and there was more concern regarding the appropriateness of prior higher-tier care for Black women vs. white women.

Overall, there was no difference in providers’ final decisions when it came to patients’ race or gender. However, Nephew questioned whether these results transferred to real-world application.

Without more data, Nephew said this question cannot be answered. Data are also needed to know how bias impacts referrals, transplant committee decisions or doctor- patient communication.

“In conclusion, I hope that I've outlined lack of access is a symptom of health inequity, and that without appropriate data — without knowing what the denominator is, how people progress through the cascade, without understanding the impact of our own culture on access — it's hard to create the customized tools that are going to be needed if we're going to achieve equity,” Nephew said.

When asked what steps could be taken to close the knowledge gap regarding transplant access, Nephew told Healio it is likely initiatives will come from United Network of Organ Sharing (UNOS), not the federal government.

“UNOS is beginning to realize that if we want to move forward on equity, they’re going to have to set some benchmarks and goals for data collection,” Nephew told Healio. “It could be voluntary at first, and then a requirement to maintain your transplant certification.”

Editor's Note: On Feb. 24, a quote was corrected to clarify that lack of access is a symptom of health inequity.