The utility of personal wearable data in long COVID and personalized patient care, 2024, Elizabeth J. Enichen

[Mij]

Radin et al.’s recent study on patients with long COVID demonstrates that personal wearable data can provide critical insight into complex conditions. This editorial argues that research insights gained through personal wearables support the integration of personal wearables into healthcare. Challenges in incorporating wearable data in the clinic point towards AI data sorting, data sharing, device interoperability, FDA oversight, and expanded insurance coverage as first steps towards addressing these challenges.
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[rvallee]

I have no doubt they can, but so far I don't think I've seen anyone actually do something useful with it. Lots of potential, but long way ahead to integrate it into useful information. There's a deeper problem with systems and methodologies that just don't know how to pull it off yet, are stuck in old paradigms that can't be adapted to something like this.

 

[wigglethemouse]

I have no doubt they can, but so far I don't think I've seen anyone actually do something useful with it.

I'm waiting to see what the Stanford Crash Course study finds regarding wearables. Dr Mike Snyder at Stanford has been a big proponent of wearables for many years so I bet he will assign plenty of resources to interpret the data thoroughly, especially as he is head of department and has many years invested in this area. He and his team will have a lot of data.

The Crash Course study aims to understand why crashes occur, the differences in crashes between and within individuals, and ultimately how to predict and prevent crashes using wearable devices.

 

[Kitty]

The Crash Course study aims to understand why crashes occur, the differences in crashes between and within individuals, and ultimately how to predict and prevent crashes using wearable devices.

It's valuable work, but as a moderately affected person, I don't think I've ever had a crash that came as a surprise or that I couldn't explain.

Many were self inflicted (e.g. doing something enjoyable), some happened because things went wrong (e.g. getting held up by a traffic accident when already in the red zone), and others were the result of medical treatment (e.g. a wisdom tooth extraction). None required a wearable device.

 

[Trish]

I get what you are saying, Kitty, and I think that's probably the case for many pwME.

For me I think if I'd had real time wearable data when my ME was mild and I was still working and caring for a family it could have made a big difference.

I was always on the edge of tripping myself into crashes, had increasing amouts of sick leave, ignored the signals to stop far too often, and had no success in getting my colleagues and bosses to understand my limitations.

As a member of a staff of maths and science lecturers, if I'd had data to demonstrate my difficulties and what was triggering crashes, I think they would have been interested in helping me interpret the data, instead of being skeptical about my needs.

They never understood why asking me to teach in classrooms on the other side of the campus from the staffroom, to go up and down stairs multiple times a day, and not providing me reliably with an overhead projector rather than writing on white boards made a huge difference to the frequency and length of sick leave with crashes.

 

[Kitty]

I was always on the edge of tripping myself into crashes, had increasing amouts of sick leave, ignored the signals to stop far too often, and had no success in getting my colleagues and bosses to understand my limitations.

As a member of a staff of maths and science lecturers, if I'd had data to demonstrate my difficulties and what was triggering crashes, I think they would have been interested in helping me interpret the data, instead of being skeptical about my needs.

Yes, good points.

I had the same problems, but in my case it would have been counterproductive to have data. The cause of the crashes was that I was working, and there were a handful of periods when I wasn't really up to it. We could only take six months' sick leave on full pay, and as half pay wasn't enough to live on, I had to go back even if I wasn't really ready. The only options were to stop work altogether (probably for good), get myself evicted because I wasn't earning enough to pay my way, or conceal some of the toll it took on me.

I could hide it to some extent because I stayed in admin-heavy jobs for a long time and got very good at them. I streamlined or automated processes, shifted workload around to accommodate periods of low function, and traded job roles with colleagues. Despite the illness, I think I was an asset to my employers for 38 of the 40 years I worked; the other two, I was underperforming because I was still emerging from one of my crashes.

I can see the benefits of data, but there are significant risks if disabled people share it with employers. For those in jobs with schemes offering ill-health retirement, the evidence could be really helpful if they needed to make a case for medical retirement. It might even mean they could get it before they drove themselves into severe illness.

But the majority of workers don't have that kind of security. For them, data on how a disability affects them could quickly turn into a hard (and overly crude) measure of capacity that would make it easier to sack them, even if they were only experiencing a temporary dip in their performance. Plenty of healthy employees have those dips over a working life—bereavement, new parenthood, medical treatment—because people aren't machines. But their employers won't have movement data they could weaponise to get rid of them.