Felice Freyer shares approach to writing about a racist lung function test

When freelance journalist and AHCJ President Felice Freyer began reporting on recent updates to measuring lung function, she didn't know she would dive into a practice that dated back centuries: adjusting an instrument's measurement with a race variable, essentially making it look as though a Black person's' lung function was better than the same measurement from a non-Hispanic white person.

These race-adjusted instruments, known as spirometers, have a significant impact on determining people's health as well as whether they qualify for disability payments or certain jobs. In a feature story for Harvard Public Health, Freyer dove into the history of racism that led to the flawed race-corrected equation efforts to implement a new, more equitable way to measure lung function.

This interview has been edited for length and clarity.

What was your approach to reporting this story?

I knew nothing about this issue when I started. I talked to more than a dozen people just trying to understand the history and how these tests work. The fact that I had contacts there and could actually visit Boston Medical Center was so great. It was also important that Boston Medical Center has a huge percentage of Black patients. I was hoping to find a patient who did the test and said, wait, I'm getting a different answer than I did before. But we couldn't find a patient.

Did you find other surprising ways bias can creep into measurements of lung function?

There was just so much ambiguity in this story. One other way is that the person who's performing the test can be "coaching" the person taking it, telling them to keep going with their exhale. The results could also be affected by this. A respiratory therapist or whoever is administering the test might potentially coach a Black person differently than how they would a white person. It was really fascinating to uncover these details.

What was the hardest part of navigating this topic?

The confusing thing to me, and why I had to make so many phone calls, is that doctors were saying the race-free equation was not making a dramatic difference. The person at Boston Medical Center couldn't think of any patient whose life was changed by this in any way. They said it was because in real life, doctors don't use just this one number, they consider a lot of other things. And, it's really great to have a more accurate algorithm in the spirometer, but it doesn't stand alone in the decisions we make about care.

Were there key studies or sources that kept you going through these difficult phases of reporting?

There was one study that estimated millions of people being affected by the change. I also went back to Dr. Nirav Bhakta [who co-chaired the American Thoracic Society committee on the topic] and said, this is what people are telling me. He pointed out that there's a side of it that the doctors may not be seeing. Administrators of disability programs aren't doctors. They're looking at a single number, and that can make a big difference for an individual. So, that was a really important perspective to get.

The other thing is that there's still a story about the amount of work that's going into switching to the new system. It took people many months to make this transition. They had to create the change, educate everyone so that anyone who would come in contact with a lung function test understood what was changing. What doctors told me is that they would have patients who would get a different reading, and while it might not make or break whether they were on disability or whether they got a job that they wanted, it still was something that they had to sit down and discuss with patients.

Why was it so hard to find a patient who had been affected?

The usual avenues aren't there. It's not like there are support groups for people who take lung function tests. I usually get referred to people by doctors, and they couldn't find a good example for me. It's also because there isn't a huge swath of patients who are immediately affected - it's people who are on the threshold who will be affected. And that's not everybody who takes the test.

The other thing is, it's relatively new. The recommendation came out a year and a half ago, so it's too soon to know. There's no reason to expect that this isn't going to have a big effect over time. It's something to keep an eye on.

What is your advice for other writers covering racial disparities caused by similar algorithms?

Try to inspire in your reader the same outrage or shock that you're experiencing as you're learning about this topic. When I first talked to Dr. Nirav Bhakta, I couldn't believe what I was hearing. It is incredibly appalling that in this day and age, racism is so integral to the care that people get.

Just thinking about it and reacting to it in that way helped move me through the story. I tried to get readers to experience that same reaction and move through it in the same way. Keep that sense of outrage.