Doctor’s first attempt to address heart treatment disparity didn’t work. What’s next?

The videos were a decade in the making.

Through countless patient interviews, focus group sessions and beta testing, Dr. Kevin Thomas, a Duke Health electrophysiologist, thought he had finally developed a tool to address what he saw as one of the most glaring disparities in his field: Black patients were significantly less likely to receive a life-saving heart device than their white counterparts.

Part of the problem had to do with systemic health disparities: People of color are less likely to end up in front of a heart specialist like Thomas in the first place.

But he found the difference was deeper than that. Even when factors like insurance coverage and health care access were equal, Black patients just didn’t want an implanted cardiac defibrillator as frequently as white patients did, he said.

He thought that if he could craft the perfect video — one that clearly explained how the device worked and included segments of real patients talking about their own experiences — Black patients might be more likely to opt for the life-saving device.

But, according to a paper published this month, it didn’t work. Black patients who watched Thomas’ videos were no more likely to want an ICD than patients who went through the standard counseling process.

Still, Thomas thinks the way in which this intervention failed offers some unexpected insights into why these disparities exist and how to fix them.

“It wasn’t a positive study in a way I would have liked it to be,” he said. “But there’s a lot of important takeaways from it.”

Surgical implants for heart arrythmias

In patients with heart arrhythmias, ICDs are surgically implanted under the skin to detect dangerous abnormalities and deliver a shock to reset the normal heart rhythm.

Without it, the likelihood of dying from this type of cardiac arrest is about 90%.

One explanation for why so few Black patients ultimately decide to get the implant has to do with the unconscious biases of the doctors explaining their options, Thomas said. Doctors may be less likely to recommend the device to patients of color or may explain the risk in different ways to Black patients and white patients, Thomas said.

“When you don’t have consistent messages, then we have a scenario where bias and things like that can creep into our discussion,” he said.

A video explainer could standardize the way the information is presented, reducing bias, his team hypothesized.

To test this theory, they recruited more than 300 Black patients who were eligible for ICDs and assigned them to one of three groups: one saw a video featuring white doctors and white patients, one saw a video featuring Black doctors and Black patients, and one went through the typical counseling process with a doctor.

The study found that, at least for these patients, it didn’t matter whether the information came from Black or white doctors and patients. This made sense to Thomas.

“If you’re a Black patient, what are you used to?” he said. “You’re predominantly living in a white world and you wouldn’t even necessarily think twice.”

What was more surprising to him was finding that more knowledge about the procedure didn’t necessarily translate to more patients accepting the device.

Patients who watched the videos about ICDs scored higher on a questionnaire that gauged knowledge about the procedure than the patients in the control group. Doctors also spent less time on average with the patients assigned to the video groups, which suggests to Thomas that most of the patients’ questions were already answered. Even so, they were not more likely to want an ICD.

Thomas said this raises interesting questions about what is the “right” amount of participation for a procedure that might not be right for everyone.

“In white populations, maybe they’re overutilizing it — maybe it shouldn’t be as high as it is,” he said. “Maybe the acceptance rate in Black people is the right amount.”

He said the decision not to get an ICD could be based on a number of valid factors: maybe living longer is not the patients’ top priority or they would rather die quickly than be shocked by an implanted device.

“Everybody has a different vantage point,” he said. “You throw something like race and lived experience into it and you add a whole nother element to it.

Groundbreaking study

Even if the results of the study weren’t what Thomas hoped for, he said the team’s recruitment and participant enrollment was groundbreaking in its own right.

Researchers have been notoriously bad at including people of color in clinical trials, an issue that has raised concerns that those studies produce biased results.

Enrolling hundreds of Black participants, as Thomas did, is almost unheard of.

“There’s a narrative out there that you can’t get people of color in clinical trials,” he said. “Well guess what? I enrolled 343 patients, all Black faces, in a clinical trial.”

Thomas said this feat took strategizing and effort.

His team sifted through recruitment logs from different institutions to find the places with the best track record of enrolling Black participants in defibrillator studies. They used geospatial mapping to find out which institutions were situated areas with a high density of Black patients, to further increase their odds of success.

He also made sure the recruiters spent time explaining to patients that their participation would help them understand why fewer Black patients opted for defibrillators and help them potentially develop a solution.

Of the people who were asked to participate in the study, 80% ultimately did.

Moving forward, Thomas said he plans to sift through participant interviews about how they decided whether to get an ICD. He’s particularly interested in learning from patients who declined the device, many of whom did not want to be interviewed for the study.

“It’s the people that said, no — that’s what I don’t have a good handle on,” he said. “There’s this black hole of information.”

Ultimately, the study validated an unfortunate truth in health equity research: Identifying a disparity in medicine is easy. Fixing it is much harder.

“We’ve got to stop describing. No one’s surprised anymore when you show that Black people get less orthopedic knee procedures,” he said. “We’ve heard that now for 30 years. Let’s get to understanding the why and let’s get to trying to fix it.”

Teddy Rosenbluth covers science and health care for The News & Observer in a position funded by Duke Health and the Burroughs Wellcome Fund. The N&O maintains full editorial control of the work.