Reporter Rachel Fairbank
AHCJ member Rachel Fairbank was worried when her Fitbit showed her resting heart rate continuing to rise during pregnancy and after giving birth. While the rate typically rises a bit during pregnancy, it usually reverts to normal afterward.
Fairbank, a Houston-based freelance writer, continued to monitor her resting heart rate with a Fitbit and other wearable technology until she was diagnosed with postural orthostatic tachycardia syndrome. Then, she pitched the story to Wired magazine.
Her article, “How Chronic Illness Patients Are ‘Hacking’ Their Wearables,” looks at some of the ways patients with chronic illnesses are using wearable tech to manage their symptoms.
Fairbank talked to AHCJ about how she reported the story and the divide in how doctors are using the emerging mass of data from wearable devices.
(Responses have been lightly edited for brevity and clarity.)
Tell us why you wanted to write this story.
This is something that came out of my own personal experience as someone who has been consistently wearing some sort of wearable tech device for many years and who developed a chronic illness during that time. There was really nothing to tell me about why I was seeing certain changes. It was very bewildering. There really wasn’t any guidance in any of what you read about Fitbit online. There wasn’t a whole lot of guidance in the medical literature about why you might see certain changes to resting heart rate. Then, COVID hit and we had all these people developing long COVID, and a lot more other people going through similar journeys where they were using wearable tech, seeing changes and not knowing what they meant.
What I didn’t talk about in the article is the reaction by doctors when I tried to bring some of this data in. There’s a big divide right now between having this wearable tech data and doctors actually using them, and the divide can actually get quite hostile. … My resting heart rate continued to go up for a period of two years, and I tried remedies to get it back to what it was like sleeping more, relaxing more, working out harder or lighter, trying to eat better, adding in a multivitamin, etc. I finally reached a point where I’m like, “Okay, something is going on.”
I got referred to a cardiologist and I brought that data in and showed him this very clear pattern. The reaction? He asked me to hand him my Fitbit, at which point he dropped the Fitbit onto the table and told me, “There. Now your heart rate’s not a problem anymore.” In spite of the data showing a very clear pattern, in his mind I was just some overanxious worrywart that had nothing going on. This is a theme that I heard echoed with some of the other people that I interviewed.
How did you pitch the story?
This was my first time writing for Wired. It was a cold pitch; I’ve never worked with this editor before. I think part of what landed the pitch was that I had a personal connection [to the subject], and I was willing to talk about it myself. I also have noticed that there seems to be more interest in this topic in general. There are a lot more startups in this space and a lot more patients that seem to be talking about the limitations of wearable tech when it comes to having something wrong with you.
You interviewed some other people using wearable tech and who have started groups for people with chronic illnesses. How did you find them?
One of them, Ibrahim Rashid, I reached out to after seeing him as part of a panel on the long COVID patient experience at AHCJ’s Health Journalism conference. I also talked to the partner he’s working with to develop a program to use data to make symptoms of health conditions more predictable. I reached out to Harry Leeming, who created an app to help patients with chronic illness manage their symptoms. He started from his own experience with long COVID. I found the final patient on Twitter. She posted about seeing her stats change over time and realizing that it meant a decline in her illness.
What did you learn in the course of reporting?
It was eye-opening in just how big of a gap there is in the wearable tech space in terms of helping people understand what might be happening, or how they can use some of this data to manage a complex illness. There really isn’t much to help people right now. There are companies trying to bridge that gap, but it’s still pretty limited. It was one of those gaps in resources where you don’t quite realize how acute it is until a number of people point it out. You think, “It’s just me,” or it’s one person’s perspective, but then you start to realize this is a systemic issue. You’ve got this tech that’s designed with a very healthy, affluent client in mind, but they don’t design it for people who are going through a number of health challenges, or people who maybe have other constraints. It’s an oversight on the part of the manufacturers. There are actually very few people who are perfectly healthy. The majority of us have some sort of health condition going on, and we do need help managing it. Wearable tech has an enormous potential to help people do that.
Do you have any advice for people who don’t normally cover health IT or tech?
At the end of the day, it’s all about who’s using the tech. It’s all about the people — who’s using it, who isn’t using it, who has it been designed for, and who hasn’t it been designed for.
