Wearable devices like the Apple Watch can collect valuable health data, particularly for people with chronic illnesses, but they are not subject to the same privacy rules as traditional medical devices, experts say. (Photo by Paige Gross/States Newsroom)
For 27-year-old Amanda Lien, the decision to start wearing popular wearable tech devices, like her Apple Watch and Oura Ring, didn’t come lightly.
The Chesapeake, Virginia-based content marketing specialist works for a healthcare company, and probably knows more about healthcare data privacy issues than most, she said. She’s also not inclined to wear jewelry on a daily basis, but an official diagnosis of Mast Cell Activation Syndrome — a chronic disease she’d experienced symptoms of her whole life — in 2024 made her reconsider.
“I was like, ‘okay, if I could have a quantitative numbers-based way to check my gut on is this aspect of my health really getting worse, or am I just, am I reading too much into it?’ Or is something else going on?” she said. “It’s what finally got me to cave and get an Oura ring.”
Though the concept of fitness tracking through wearable devices has been around for decades, the ability to track biometric features like heart rate, sleep quality and stress response has become more ubiquitous in recent years. Consumers who are interested in a device they can wear 24/7 that collects data points on varying aspects of their health have no shortage of options, and new devices roll out every year.
The devices have become popular for those looking to track athletic goals and energy levels, but for some wearers, like Lien, they also provide a view into their own health they haven’t had access to before.
Lien holds some concerns about data privacy with the devices, choosing carefully which aspects of her biometrics she allows the devices to track, and which she does not. She sees her devices as tools — one piece of how she manages long-distance medical care in a complex, and often inaccessible healthcare system.
“I can go from a completely healthy-presenting, normal-presenting human to being in bed for two weeks in the span of, it has been as quick as under 12 hours,” Lien said. “And there are warning signs that my body is being run down leading up to this. … But having the ring warn me that my body is showing signs of decline, and that I might be getting sick has enabled me to not only get in touch with my doctors, but also try to proactively get an appointment if that’s needed.”
Healthcare interventions
Wearable devices use sensors to collect constant data about heart rate, blood oxygen levels, temperature and motion, and other measurable factors. Users can view the data directly, sync it with other apps and collect a report that tracks trends over time.
Because she’s managing an ongoing condition, and can only see her doctors every so often, Lien said her Oura Ring functions as a record keeper for all the data that may help her answer the question, “how are you feeling?” or “how have you been sleeping lately?”
“In front of my doctor, I can look up my sleep score, which helps jog my memory about what the heck is going on,” she said. “But it also pays attention to things that I don’t, like how long I was asleep or how long I was in REM sleep.”
With data collected by her ring and through talks with her doctors, Lien has also learned to adjust parts of her routine, like when to eat in relation to taking medication, or by taking time off from work to rest when the ring warns her that she may be getting ill.
Houston-based Stacee Hawkins, a 57-year-old with Parkinson’s disease, has been using her Apple Watch in combination with an app called StrivePD to track the condition’s affect on her motion. The watch and app combo tracks her eating, medication and movement and has offered a lot more insight than trying to document it on her own.
“Almost within maybe two weeks of looking at the information that I was getting back on when my tremors happened, I could see kind of when my medication kicked in,” Hawkins said. “And one thing I noticed was that on days when I exercised, my medication kicked in about 50% earlier.”
Her doctor also saw through the data collection that Hawkins’ medication wasn’t lasting as long as it should through the day, and adjusted accordingly.
Brianna Hood, a physical therapist and clinical specialist at Rune Labs, the company that produced the StrivePD app, works with the company’s product and design team and clinicians to best utilize the data they receive.
The effects of Parkinson’s disease fluctuate day by day, she said, and ongoing data helps the patient’s doctors adjust their physical therapy exercises or alert neurologists and movement disorder specialists when the device tracks decline. The wearables help keep management of the disease from being too much of a “guessing game,” Hood said.
“Parkinson’s has its ups and downs. I’ll have … a string of a couple of weeks where I’m doing really well, and then I’ll have a string of days, maybe even a week or two, where I’m really struggling with it,” Hawkins said. “Having all that information gives me some objective information to pair with my subjective observations of myself.”
Physician Lucienne Ide often works with information from wearable devices for her digital healthcare company Rimidi, a platform that helps with remote patient monitoring and chronic disease management.
She sees how the devices are helping to fill gaps in an overwhelmed and often understaffed healthcare system by helping patients advocate for themselves during visits. Ide even has personal experience with an emergency intervention — after her husband underwent open heart surgery a few years ago, Ide tracked his heart rhythms on two smart watches, and spotted atrial flutter, a heart rhythm disorder, which she alerted doctors about. Because of her monitoring, he was able to receive care in enough time.
But Ide thinks officially integrating smart wearable devices into healthcare systems is a tricky move. She also pushed back on the idea that every American should have a wearable — a statement Health and Human Services Secretary Robert F. Kennedy Jr. made in a House subcommittee in June.
“I don’t think we have the workflows built out around where that data goes, who it goes to, how it gets reviewed,” Ide said. “You know, clinicians have concerns around liability, right? If this data is shared with me, especially if it’s sort of continuously streamed to me, you know — if a tree falls in the forest, am I liable for it?”
Data collection and privacy concerns
Despite wearables acting a tool for both patients and doctors, the companies that produce them do not need to follow the same levels of privacy and safety regulations that FDA-approved medical devices would, and information does not need to be protected under the Health Insurance Portability and Accountability Act (HIPAA), said Andrew Crawford, senior council with the Center for Democracy and Technology’s Privacy and Data team.
“There’s potential for discriminatory treatment when it comes to insurance rates or possible profiling by data brokers, creating profiles of people based on either direct or inferred health conditions,” Crawford said. “That then affects not only the type of ads people see, but maybe the types of opportunities that are presented to them when they seek things like insurance.”
It can be a daunting task to stay on top of the privacy policies of each device and app, Crawford said. The U.S. doesn’t currently have federal data privacy protections, but such legislation might bring more transparency to industries like these, that deal with sensitive personal data but aren’t regulated under healthcare laws.
“Because of that, it’s on each consumer to do their homework, to read those policies, hopefully try to understand them and then make a decision based on how comfortable or not they are with the data practices associated with that product,” Crawford said.
Oura’s data collection and privacy policy were recently called into question when the company said it was partnering with the Department of Defense and data mining company Palantir, which is used by law enforcement agencies, Immigration and Customs Enforcement and the Centers for Disease Control and Prevention. Droves of users took to social media to announce they were ditching their rings in response, some spreading misinformation that the military now had access to all of their health data.
“For the record, we will never share your data with anyone unless you direct us to do it,” Oura CEO Tom Hale said at a Fortune event in early September. “We will never sell your data to anyone ever.”
But both Lien and Hawkins said they have their reservations about how data is stored and who has access to it. A few years ago, Hawkins said she wouldn’t be as worried, but “with the current administration, that is a deep concern,” she said.
“Five years ago, I would say, ‘Oh you know, of course, our governmental entities recognize that this is our private information. There’s no way the government would, you know, pressure companies to provide that,” Hawkins said. “I can’t say that anymore.”
Lien doesn’t worry about privacy for heart rate data, stress, exercise or sleep — the primary data points she collects. But she’s very aware of how certain healthcare information, like menstrual cycle and other reproductive information, could be vulnerable and potentially dangerous to track digitally after the fall of the constitutional right to abortion in 2022.
“My reproductive cycle is a whole other beast to me, and if the app were to start tracking my location, that would be a big no for me,” Lien said. “I understand that right now, especially, human-generated data in particular, is often for sale. And also that sometimes to use a tool, you have to decide if you are willing to, knowing that, still use that tool. And for me, the trade off is worth it.”
But both women say they continue to make the choice to use their devices as a key role in managing their health. Maybe the healthcare industry will evolve to regulate the devices more and give them more peace of mind, they said, but for now, their concerns are outweighed by the agency they’ve gained.
“Using a wearable and the information that it gives you can be very empowering. With something like Parkinson’s, it’s hard not to feel like a victim sometimes, because there’s so much you don’t control, but having that information gives you power,” Hawkins said. “You know, knowledge is power, and knowledge dispels fear. And empowerment and courage are two things you really need when you’re facing something like this.”
Editor’s note: This item has been modified to correct Stacee Hawkins’ age. She is 57.
This story was originally produced by News From The States, which is part of States Newsroom, a nonprofit news network which includes Wisconsin Examiner, and is supported by grants and a coalition of donors as a 501c(3) public charity.
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