Resilience
A FitBit for Illness: The Start of Human-Centered Healthcare
Long Covid has baffled scientists. Patient-centered research may offer answers.
Updated June 26, 2023 Reviewed by Hara Estroff Marano
Key points
- Patients are using wearables focused on managing symptoms of an illness, rather than improving fitness.
- The devices enable partnerships with universities to design research that directly benefit patients.
- The mission is to leverage patient expertise to treat illnesses and fill gaps in traditional medicine.
When Harry Leeming first got sick with Covid in March 2020, it set him on a journey to build a company that could help transform the science of chronic illness.
But it started out as just pure, unexplainable suffering.
Leeming never seemed to recover from the viral infection, developing a case of long Covid. For months, it was often impossible to stand due to his severe heart palpitations.
Months into illness, the London-based engineer, then 29, realized that his ongoing symptoms were so severe that he needed to go to the local emergency department.
He was flabbergasted when the doctor dismissed it as just “anxiety.”
“I couldn't quite believe them." Leeming said. “It dawned on me that medicine in its current state was not able to help me.”
He founded a new company, Visible. It has attracted more than 25,000 users and more than $1 million in seed funding.
Last month it earned him an invitation to the UK prime minister’s office at 10 Downing Street to discuss governmental efforts to gather long Covid data.
Leeming is asking key questions about the nature of science. When the medical profession is baffled by a strange disease, how can patient experts push research forward?
A FitBit for illness, not fitness
“I turned to the internet to research what was going on in my condition and was totally alarmed to come across not just the world of long Covid but millions of other people with similar conditions who have had almost identical experiences to me,” he said.
He searched online for illness trackers, for a way of measuring his dizzying array of symptoms. But all the information was about FitBit and Garmin devices, with photos of people running and working out—all activities that were impossible for a man mostly bed-bound for months.
Billions of dollars worth of wearable fitness devices sell each year. But, he wondered, why "not for people at the other end of the spectrum, who are equally motivated to improve their health?”
His doctor's blood tests kept coming back normal. But using his own wearable device, he saw that going from lying down to standing up would cause massive changes in his heart rate. From there, he learned to use the data he was collecting to manage his energy levels.
Many of Visible's investors had long Covid themselves and shared the desire to use wearables for pacing, keeping close tabs on whether their heart rate has exceeded an acceptable threshold. That’s a vital management technique when “post-exertional malaise”—a state in which the body fails to recover from basic exertions—might be lurking around every routine task in your day.
Building the future of human-centered clinical research
Visible's platform could work as a bottom-up way toward discovering a biomarker, which could enable diagnosis of long Covid and other chronic illnesses in clinical settings and further recognition by insurance companies.
Smartwatches are also cheap and accessible compared with other experimental methods—such as fluorescent microscopy—that have been used to find microclots in the blood of long Covid patients. Given the ubiquity of smartphones and the cost of wearables—many retailing for less than $100— the diagnostic tools may well already be in our pockets or on our wrists.
Visible has inked research partnerships, by which patients on their platform can opt in to share their anonymized data with scientists.
They're launching two studies with Imperial College London delving into long Covid’s effect on the economy. Another will examine how long Covid disrupts the menstrual cycle, a phenomenon widely discussed on patient forums but for which there isn’t yet much formal research.
With most long Covid research pointing toward disruption of the autonomic nervous system, Leeming reckons that a measure of heart rate variability—fluctuations in the length of time between heartbeats—could be a pivotal clue to the more than 200 symptoms reported for long Covid.
Patients as entrepreneurs
More than 100 million people globally live with long Covid or similar energy-limiting conditions. A Harvard study estimates that long Covid could have a $3.7 trillion impact on the U.S. economy.
Startups like Visible keep cropping up, populating what entrepreneur and investment analyst Ibrahim Rashid terms the “long Covid economy.”
Rashid became severely sick with long Covid while working on his masters degree in public policy at the University of Chicago. He co-founded a tech company that uses wearables to help manage long Covid and post-concussion syndrome.
“This has come from those of us who've recovered, walked out of the darkness, and we need to pull other people out using our entrepreneurial skills,” he said. “At the same time, we're using the megaphone of entrepreneurship to try to shake large institutional players out of complacency to also tackle long Covid.”
“Much of healthcare has been focused on insurance and catering to a fee-based system,” Rashid says in Strong Hauler, a memoir of his odyssey. “On the patient side, I’m just focusing on how to get better. The lived experience of suffering and being let down really helps us focus on the problems of the people.”
Harnessing practical wisdom
Rashid and Leeming are part of a larger citizen-science movement . Emboldened by 21st century tools, it is creating a more patient-centered healthcare system.
In directly embodying their solutions, they become the best type of innovators: fusing lived experience with world-class expertise.
It’s a high-tech idea with ancient roots. We can look back to the Greek concept of phronesis, or what Aristotle conceived of as “practical wisdom.” Wisdom is accrued when you build habits and act with expertise. We achieve expertise when we learn to do things the way the phronimos, or expert, does them.
We tend flowers like a master gardener would, or practice kicks like a black belt in karate.
To achieve our best collective health outcomes, it’s similar: Approach your illness the way expert patients do.
