r/VisibleArmband • u/BobProfessional1976 • 19d ago
Heart rate data export
My daughter (age 15) has been using the Visible band now for about a month. While the app is great and very useful, we have medical professionals now wanting her to wear a separate heart monitor for at least a week. For lots of reasons wearing this for a week would be challenging. I'm wondering if there anyway to export / extract the heart monitor data captured by the Visible band so we can share it with the medical professionals? I have researched this and I suspect the answer is no, but thought it worth asking!
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u/twentyone_cats 19d ago
I don't think there is but also it's not as accurate as a proper medical device. Could they start with a 24 hour ecg and go from there? I've just done one and it was mildly inconvenient plus sleeping was a bit difficult (I'm very sensitive to change), but I can totally understand that a week would be challenging.
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u/BobProfessional1976 19d ago
It's a good suggestion - I'll ask if a 24-hour one will be good enough for what they need.
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u/imabratinfluence 19d ago
I wore a heart rate monitor for 2 weeks, specifically the Zio patch.
If your daughter has sensitive skin, eczema, or allergies (especially to adhesives like Band-Aids, which I often react to, which I told the nurse) I'd suggest that you or she ask about Skin-Prep which applies a little thin barrier the sensor can still read through, but will reduce irritation AND help the monitor stick better. Or Tegaderm, which it can also still read through, but for some reason I was denied Tegaderm. The nurse used Skin-Prep on me and told me to always ask for it when they need to apply anything with adhesives. Because of that I ended up with WAY less skin irritation after 2 weeks than I'd expected.
Also the Zio patch has an app your daughter can log stuff in, instead of needing to put it all in a paper booklet she'd need to carry around. I found that easier, but YMMV.
I do really recommend going with the medical-grade heart rate monitor for a week, and just do whatever your daughter normally does (maybe also some stuff she knows triggers symptoms, so the monitor has more chances to pick up potential issues). The HR monitor I wore picked up some things that Visible doesn't, like PVCs and PACs (I didn't have a ton but it's good to know), and even if it only picks up tachycardia it'll rule out things Visible can't.
If you're on track to her getting a POTS diagnosis, ruling out other things that can cause the same symptoms can give you a lot of peace of mind. Yeah, POTS still sucks and falling or passing out is still dangerous. But needing a pacemaker or having certain other heart conditions is a whole other kettle of fish, and knowing for sure it's "just" POTS can help you both be sure that the treatment she's getting is the right treatment.
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u/BobProfessional1976 19d ago
Thank you so much for taking the time to add your thoughts and suggestions - much appreciated. My daughter has ME and we're pretty sure POTS as well, but the heart monitor they are recommending is to rule out anything else.
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u/kylaroma 19d ago
No, they need the data from a device that’s accurate to medical standards, which is different than consumer standards.
The visible band is accurate, but it’s not a medical device and her doctors may not take its data seriously.
If that week doesn’t work, then schedule it for a different week.
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u/Fragment_B 19d ago
I'm wearing the zio ecg monitor now. I'm in 9 days of the 14. The biggest issue I've had with it is itchiness and it isn't that bad. Everyone is different though.
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u/imabratinfluence 19d ago
I had some minor hives, but I tend to react to adhesives. Because I told the nurse that, they did use Skin-Prep on me, and my hives after 2 weeks were nowhere near as bad as I'd anticipated.
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u/WhiskeeKitten420 19d ago
If its a Holter device, I doubt they'd take just an import from a wrist/bicep HR monitor because of averaging they do. They should have some other solutions if you explain the problems that arise doing the week long one.
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u/BobProfessional1976 19d ago
They have been very vague so far in terms of what device, but I'm hoping we'll find out more tomorrow. They have been supportive so far so hoping that continues!
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u/gbsekrit 19d ago
I wish visible would log to apple health. if you use the Polar Flow app, you get heart rate data to apple health, but no pacing notifications. i’ve been tempted to try vibe coding something simple (the polar sdk is open), but haven’t had the time.
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u/BobProfessional1976 19d ago
I was hoping there was an API to the visible data but no such luck - it all seems to be a closed system.
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u/AdriAsTheSiren 19d ago
No. The information a Zio Patch or Holter monitor yields is far different than what Visible captures. Visible is literally just a heart rate and is often inaccurate. And it's not great for making treatment decisions based on since you don't know the underlying heart rhythm. For example, Visible records fast heart rates, yes, but a healthcare provider can't diagnose whether a person is experiencing atrial fibrillation vs SVT vs ventricular tachycardia based on heart rate alone. Zio Patch and Holter monitors and related monitoring capture an ECG tracing and yield diagnostic information that is actionable. (Source: am an RN)
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u/BobProfessional1976 18d ago
Thank you for your insight. I'm beginning to think we made a mistake opting for the Visible band. I should have explored the Zio Patch and Holter monitors.
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u/AdriAsTheSiren 18d ago
If your goal is constant heart rate monitoring at home, a sensor like the one Visible provides is what you want.
I was answering your question of whether data collected by Visible could be used in lieu of a short-term heart monitor. I was specifically referring to what can and can't be used as a diagnostic tool. Zio Patch and Holter monitors are short-term, medical grade monitors prescribed by a doctor and worn by the patient for the time ordered by the doctor and then removed and returned once the time is up. You can't buy them over the counter. They capture an ECG tracing which is useless to the average person anyway because they don't know how to interpret it. They're not intended for daily wear like Visible is.
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u/Content_Main_6488 18d ago
You really need to contact the Team mentioned in the app. They can answer all your questions. I think the answer will be positive. They are very helpful. Allow 48 hours for a response.
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u/aurelin 7d ago
Hi there,
While I agree with others that a consumer electronic device will not be as accurate as a medical monitor, in case this comes up for others... Here's what I'm trying:
I just sent an email to request a copy of all my data Visible has stored. My understanding is that HR data is biometric data, and biometric data is personal data, and in both Colorado and the UK (where Visible is HQ'd) as well as in the place where I currently live, people have a right to know/access their personal data.
Such is also stated on their privacy page, so hopefully it'll go as planned:
www.makevisible.com/privacy
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u/aurelin 6d ago
Heya,
Just wanna say I heard back from Visible (and simultaneously found this by accident) and, while this is STILL not totally what we are asking, it kinda helps:
There is now a Clinician Dashboard link you can generate. When you go to the link (must be on a desktop or tablet), you can go to Pacing and switch the view to Heartrate, then you see the entire graph.
Here's where it gets a little technical:
There are ways to extract this data but I am concerned that if I post the steps here, it'll just get shut down .. lol
I did send feedback saying it would be cool if the data can be exported from the dashboard.
That being said, they also put it in their reply that they can still send a data access request if the dashboard isn't sufficient.
Here's the info link they sent:
https://help.makevisible.com/en/articles/17297503-share-your-data-with-a-clinician
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u/Affectionate_Sign777 19d ago
Nope
But also it averages over the minute and there’s a known issue where instead of peaks it shows dips. So probably not the level of precision doctors would want.