Feedback needed: my pacing app w/ armband (Visible alternative)

J

jonathanb987

Established Member
(Approved by moderator)

Hi, my name is Jonathan. I'm severe and have been sick for five years now. I am 95% bedbound. It helps me a lot to pace using a heart rate monitor, but I got tired of paying a subscription for Visible, especially when I feel like it is lacking key features that help me pace. So I decided to build my own app called PaceWillow.

With the app, you wear a heart rate band, the same technology as Visible. In fact, you can even use deactivated Visible bands with my app. You get a notification when you go over your heart rate limit. Then the app shows how much energy you have left represented by a battery. It tells you how strong your baseline is at the beginning of each day. It's all automated so you don't have to answer lengthy questionnaires about your symptoms or anything like that.

We can't see any of your data. It all stays on your phone. It's a one-time price of $89. It comes out on Android and iPhone December 16. Android beta testing is open now for people in the US at pacewillow.com/beta.

Today screen
Rests tab
Chart tab


I'd really like to hear your feedback and suggestions.

Thanks,
Jonathan

(PaceWillow isn't connected to Visible Health Inc., which makes Visible.)
 
jonathanb987 said:
Then the app shows how much energy you have left represented by a battery. It tells you how strong your baseline is at the beginning of each day. It's all automated so you don't have to answer lengthy questionnaires about your symptoms or anything like that.
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Hi Jonathan!

What is the basis of the «energy left» concept? And what’s «strength of baseline» at the beginning of the day?
 
Utsikt said:
Hi Jonathan!

What is the basis of the «energy left» concept? And what’s «strength of baseline» at the beginning of the day?
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The energy left indicator uses formulas to determine at what heart rate ranges you are in light activity and exertion. It also determines how strong your body is starting on any particular day. It factors this all together to predict how much energy you might have for the day and tracks how it drains throughout the day based on your heart rate and other metrics.

For the baseline indicator, it looks at your data from last night and compares it with the previous four weeks. It uses a weighted formula that factors in resting heart rate, HRV, sleep, energy usage over the past two days, and how well your heart rate settled during sleep. It uses these to determine how well your body is starting the day off.
 
Why is there any reason to believe that any of these measurements can inform the user of how much they can do or how they are currently doing?

And maybe more importantly, how would this add more insight than just asking the user how the last day was and how they feel now? From what I can remember, other similar approaches have failed to demonstrate that they add any value beyond what you get from those two questions, and you don’t need an app for that.
 
Yes, there isn't strong proof yet. It's also worth noting this is a wellness tool, not a medical device/program.

The app does ask those two questions. Every morning and evening it asks how you feel, and it's optional. So it's not meant to replace them.

For me the main thing the band adds is timing. Asking how yesterday went only tells me after the fact, and PEM often shows up a day or two later. The heart rate alert tells me while I'm doing something. A lot of the time I don't notice I'm overdoing it until later.
Over 250,000 people use Visible, and a lot of them pay an expensive monthly subscription, so people are finding something useful in it (I know I did, and so have my friends). I know that isn't proof it works. That's part of why I didn't want to charge a subscription.

My beta testing users record both the check-in answers and the band data, so I'm planning to look at whether the band predicts bad days better than the answers alone.
 
jonathanb987 said:
Yes, there isn't strong proof yet. It's also worth noting this is a wellness tool, not a medical device/program.
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Oh please. Of course it’s giving medical advice, it’s instructing people on how to manage their condition. The legal loopholes are irrelevant to the de facto situation.
jonathanb987 said:
I know that isn't proof it works. That's part of why I didn't want to charge a subscription.
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Just a payment of $89 instead..
jonathanb987 said:
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That data is a meaningless as a survey of Lightning Process participants. You can gather this data for virtually anything. If this is all of it, there is no evidence in favour of the hypothesis.
jonathanb987 said:
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We have a thread on that paper, note the last comment.
 
Utsikt said:
Oh please. Of course it’s giving medical advice, it’s instructing people on how to manage their condition. The legal loopholes are irrelevant to the de facto situation.

Just a payment of $89 instead..

That data is a meaningless as a survey of Lightning Process participants. You can gather this data for virtually anything. If this is all of it, there is no evidence in favour of the hypothesis.

We have a thread on that paper, note the last comment.
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Yes $89... Compared to $980 that Visible costs over 5 years.
 
Hi Jonathan. Welcome to the forum. I appreciate efforts to see whether use of continuous heart rate monitoring can help with pacing. Scientifically valid or not, I think a lot of us have found at least a few weeks of wearable data can improve our confidence that we really do need to slow down, and have something objective to show ourselves and others that there is an objective indicator for some of our symptoms.

I also am skeptical about algorithms that use undeclared weighting of a range of variables to calculate a single energy capacity / baseline figure for each day. Are you willing to make public the algorithm with weightings you use and how you decided it? Does the weighting given to each variable depend on each individual's history, or is it the same for everyone? Was AI used to create the algorithm, and is it used to adjust the algorithm to each person's data?

I use a Fitbit that also includes step count, which I find one of my most reliable metrics for anticipating PEM, along with resting heart rate and sleep quality. But my most relable sources of data are how I feel - symptoms and function. I just use the fitbit data as confirmation and to give myself a reduction in guilt when i know I can't manage a task I hoped to do.
 
Trish said:
Hi Jonathan. Welcome to the forum. I appreciate efforts to see whether use of continuous heart rate monitoring can help with pacing. Scientifically valid or not, I think a lot of us have found at least a few weeks of wearable data can improve our confidence that we really do need to slow down, and have something objective to show ourselves and others that there is an objective indicator for some of our symptoms.

I also am skeptical about algorithms that use undeclared weighting of a range of variables to calculate a single energy capacity / baseline figure for each day. Are you willing to make public the algorithm with weightings you use and how you decided it? Does the weighting given to each variable depend on each individual's history, or is it the same for everyone? Was AI used to create the algorithm, and is it used to adjust the algorithm to each person's data?

I use a Fitbit that also includes step count, which I find one of my most reliable metrics for anticipating PEM, along with resting heart rate and sleep quality. But my most relable sources of data are how I feel - symptoms and function. I just use the fitbit data as confirmation and to give myself a reduction in guilt when i know I can't manage a task I hoped to do.
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thanks for the feedback!

Yes, I plan to have a section of the app where people can learn how everything is calculated and works together.

At the moment, the weighting itself does not change but of course the inputs do.

No, the algorithm does not use AI nor used to adjust it. It's just formulas.

And good to know that you find symptoms are most reliable. How you are feeling is what sets the base for the calculations within the app, so we have heavy weight on this part.
 
Utsikt said:
Visible being terribly expensive does not make this cheap.
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I did not say the app was cheap.


That being said, the price of the app was set based on a survey of the community, many of which who are on a low fixed income. Almost all answers were that they were willing to pay $100-200, so I set the price at $89. It's hard to lower the price anymore unless I want to have no customer support or support to continue building the app in the future.


Of course it's not cheap (that's subjective) for everyone (there is also a free version that doesn't use band data). I also plan to open applications to receive a reduced price.
 
ChronicallyOverIt said:
How is this different than fatigue sense:
apps.apple.com

FatigueSense App - App Store

Download FatigueSense by Nana Abaogye on the App Store. See screenshots, ratings and reviews, user tips and more apps like FatigueSense.
apps.apple.com apps.apple.com
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We have a thread on the FatigueSense app. I tried it in the testing beta phase. It was truly dreadful then. I have no idea whether it is any better now. It tried to do too much and used AI extensively and disastrously badly to provide advice that if followed would have made me much sicker.
https://s4me.info/threads/fatiguesense-app.48871/
 
Trish said:
We have a thread on the FatigueSense app. I tried it in the testing beta phase. It was truly dreadful then. I have no idea whether it is any better now. It tried to do too much and used AI extensively and disastrously badly to provide advice that if followed would have made me much sicker.
https://s4me.info/threads/fatiguesense-app.48871/
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oh wow, sorry to hear! I'll definitely read into how they work and do everything I can to make this safer.
 
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