Reporting from the field transforms the story of why more people of color aren’t taking part in medical trials

I’d gone down to Selma, Alabama for the weekend. A group from the University of Alabama at Birmingham had set up a table to recruit passersby for a breast cancer screening trial led by the scientists at the University of California, San Francisco called the WISDOM trial. The study’s aspiration is to be a sweeping look at whether incorporating certain advances in genetics and science into personalized mammogram schedules could work better for people.

But not just some people. The investigators had their hearts set on trying to make sure the study was as inclusive as they could make it and buck the trend of medical trials being overwhelmingly stacked with affluent white people. As cancer medicine accelerates towards more effective, and less toxic treatments that offer people the chance for longer, better lives and even — in some cases — cures, scientists are realizing that without the participation of diverse communities, those opportunities will primarily benefit white people, richer people, and more educated people. In a study of diversity in brain cancer trials, over 91% of participants from 662 of trials were white. 

In other words, scientists have been trying to figure out how advances in medicine and technology can be more inclusive and lessen disparities rather than exacerbate them.

Part of that work, they believed, was showing up in communities of color to talk to people face to face about their study. So, Le’Andrea Anderson Tolbert, one of the WISDOM community research coordinators, her mom, and a couple of her colleagues had set up shop on the side of the road on a blazing day in Alabama. I’d come along to see how that was working out for them. Had I not, I would have been left with the conventional wisdom that historical traumas were why people of color didn’t participate in medical trials. 

It was the weekend of the annual Bridge Crossing Jubilee, and people had converged from all over the country – though mostly the south – to march and sing and remember those who’d bled on the Edmund Pettus bridge for their rights. But before all that, they enjoyed the festival with food and music and a row of tables from health, legal, and educational organizations that passed out information on their services.

The WISDOM table was at head of this row. When people stopped briefly, usually lured in with the promise of a free pocket hand sanitizer bottle, Anderson Tolbert would spring into action. “Have you heard of the WISDOM study?” she’d say. 

As a science journalist, researchers and doctors are usually just an email and a phone call away, but patients and trial participants are a much more elusive find. I, too, sprang into action when the festival goers started inching away from the WISDOM table. 

“Uhh, yes, I’ll talk to you,” one woman said to me, looking over her shoulder at her departing friend. 

And so, I heard stories. People told me of white doctors had terrified them during breast exams and of white nurses who snidely told them to get their tubes tied because “they” shouldn’t have any more children. They told me of being dismissed at hospitals and health clinics and being made to feel silly. But not one of those experiences nor the knowledge – if they had it – of medical atrocities like the Tuskegee syphilis study or Henrietta Lacks cells barred them from a willingness to learn more about clinical trials and participate in them, if it worked out.

That was a turn. 

For practically everyone, what mattered more was that they were first offered the opportunity to participate in a trial — and then that the clinician took the time to fully explain that trial person to person.

If an investigator took the time to answer questions — like why are they doing the study, who would it benefit, and what would it take from her — then most people said they’d consider the trial. It took just few days of in person reporting to buck the academic dogma.  

Scientists had told me so many times in interviews that history like Tuskegee or the organ thieves were the problem, but everyone I talked to said that wasn’t the issue. It was that clinicians had designed trials to be exclusive, that access to trials and the ability to participate in them were limited, and that scientists simply hadn’t taken the effort to invite people of color to join trials. 

It may seem trite to say, but the power of taking a risk and showing up in person opens up pieces of reporting that bring twists to the story. People get an opportunity to tell their own stories and explain their own thought processes, and it gives you a chance to put what others have told you to the test. 

Second, you get a glimpse into the challenges that some communities face. The drive from Birmingham to Selma takes you through long country roads. After dark, the streets’ only lights are the heavens. It’s not a long or a terrible drive, but you’d need a car to get to the academic hospital at UAB — and it’d be a pain if you had to do it multiple times a week. No wonder many rural people, especially poor rural folks, don’t get the chance to be in a trial.  

And third, it gives people a chance to trust you. Taking the time to someone and for them to see you is what makes stories flow. Without that, I would have only been left with the conventional academic wisdom — that Tuskegee and events like it are why trials are so white. It’s not, and this reporting also let me go back to the academics to challenge them with the stories from real people. It complicated the story, but helped create a richer and, I think, truer picture.

At one point, I’d sat with a man in Virginia after an outreach event from Virginia Commonwealth University. We talked for an hour. He said, “I’m alright with the doctor named Winn,” referring to VCU’s cancer center director. “Because I saw him here.” Then he looked at me and said, “And I’m alright with you. Because we sat here.”