I had an idea.. fitness wearable to help CF in all ways

[Dank]

So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a CFr. Here's what I got so far on this idea:

Generalizations:
-Fitness wearables are steadily increasing in tech, and I think it can help us manage our life with CF
-I think with the right data, you can predict when your body is "losing" the CF fight, which could help with intake of more nutrients and increase of treatments
-Fitness wearables aren't THAT expensive
-The tech is there, the data is not.

Background:
I've been doing a lot of reading tonight on the Bioimpedance sensors included in the UP3 fitness bands. These bands are new (and so is the tech) and I think we can utilize them to help us make informed decisions based on our data (compiled over time). I think this because the sensors can measure different variations in Oxygen in your blood by measuring and manipulating the electric energy in our system. I think if we used sensors in key locations that we could potentially be able to log and collect data that will tell us CHANGES in that kind of data. What do I mean? Well basically there are new fitness bands that will emerge that will allow us to collect data using electronic sensors. It uses safe frequencies to transmit data from one sensor to another, and measures the changes in the frequency. I know a little bit about this from my research tonight but there is still ALOT to learn. They use sensors in electrons when monitoring various functions for complicated surgeries like brain and heart surgery according to my friend whose wife specializes in this field of medicine! Such exciting technology. So, what do I think we can do for a CFr? I think we can measure heart rate, combined with the advanced sensors to tell us advanced data about our blood and body. I _think_ we can use this data in an evolutionary way to potentially predict or detect problems. Why do I think this will work? I think we can all agree that in today's society, we just don't have enough data about our bodies. I think fitness wearables can help us with this and already are. You can wear one to tell you how you are sleeping, they can track your heartrate to tell what stage of sleep you are in, right now. That cool data, presented in the right away can be used to establish baselines and help predict declines so you can make educated decisions based on this data.

What's a Bioimpedance sensor?
Jawbone’s new UP3 wrist band uses a single bioimpedence sensor to cover three bases: heart rate, respiration rate, and galvanic skin response. According to the company’s own blog post explaining the technology, “The sensor measures very tiny impedance changes within your body. For heart rate, we are measuring the impedance changes created by the volume of blood that is flowing in the Ulnar and Radial arteries.”
The same sensor, worn around the wrist, will also be able to tell respiration and hydration by looking at metrics like oxygen in the blood. It does this by using four electrodes that drive a tiny bit of electrical energy to each other, and then measuring the results.


Source: http://www.digitaltrends.com/wearables/whats-inside-fitness-tracker-anyway/#ixzz3qJHwhE7y
More reading for Up3's tech: https://jawbone.com/blog/up3-advanc...ign=Affiliates&utm_medium=IR&utm_source=10078

Are there other things that use the biosomethingoranother sensors? Well I found something called an AngelSensor, which was funded by Indiegogo and is being released to the public as an OPEN SOURCE platform. This seem to be the most promising for my cause, as the other devices won't have the ability for users like myself to really develop anything to help.


OKAY so I know this is a lot to read, and this is a lot to explain. I am assuming at this point in my post you are either genuinely intrigued or confused, and it's really based on my explanation. Given how excited I am to type this to you all, I will assume that I did a subpar job. Here's what I'd like from you: Opinions.

Please answer my quick questionaire and if you'd like to reply privately, PM me!

1. Do you use any fitness bands? Do they help you with your CF?
2. Do you think that a CF-ready kind of fitness band would be helpful to you?
3. What kind of things would you really like to see out of a fitness band? (Think big!)
4. What kind of DATA do you think we can use to help make the life of a CFr better?
5. If this was available to you, at no cost, how do you think this would help?
6. Any other thoughts or opinions?

TLDR: Here's the quick summary:

I think we can use fitness bands to help with CF. I think this because the sensors coming out in the massproduced fitness bands will enable us to collect data and make informed decisions based on the combined collected data, such as heartrate, blood oxygen levels, blood oxygen saturation, and other data! We can utilize this based on our input of data (PFTs, summary of how we feel) and MAYBE, we can help make our lives easier, and collect data for people with much more funding and time, to help other CFrs for years to come.

 

[Imogene]

This is all so exciting DANK...thanks for taking the lead...I can't wait till our new website is ready and we can feature videos!
Salt and Light,
Jeanne

 

[Dank]

So far my knowledge is slightly limited but it seems like the basic bands track: steps (exercise to an extent), and the more advanced ones are starting to track heart rate (resting heartrate and active), sleep patterns (different stages of sleep and how well you're sleeping), and some of the very advanced ones that are new to the market are using some ECG technology which is just fancy way of tracking heart rate, oxygen statistics in the blood, and potentially Other sensors down the road - once the sensors are out for awhile the future experimentation will really take off from there. Right now they are using the ECG tech to determine: body temp, pulse ox, blood oxygen level, and a few other things. That's just in the fitness "bands". I did find some really cool (but expensive) fitness SHIRTS that can track breathing statistics. I may try to get one donated to me for some data measurements and data collection, but I'm in the early steps in this process yet so I may be getting ahead of myself.

So in my mind, the band can help with heartrate, and potentially telling us how our heartrate is changing as we're doing exercise or breathing treatments. Tracking our sleep could tell us if maybe we're healing or not, and maybe we can utilize this data WITH the data from our PFTs and such to really predict data in the future, and that is what I'm looking to maybe do. If I can take the data from someone wearing a band like this during a PFT test, and during a good day and a bad day, we should be able to pull the heartrate data (meaning the data pulled from the really advanced sensors) and then graph charts and maybe do exactly what I hope, and can predict our downfalls. Imagine if we can use this data to take oral antibiotics when signs become clear instead of waiting for our bodies to shut down and need IV antibiotics. I see this strategy in my head as an early warning system, once developed, that can help CFrs see progress of their health through treatments AND see if their health is starting to decline at a more rapid rate. I am very optimistic about what I can accomplish using just a fitness band, and I won't really know it's limitations till I get one and start testing on it.

I'm currently working on acquiring one or two different bands to see how CFrs can leverage it and maybe make our lives just a little bit easier. I'll keep everyone updated.

Feel free to provide input! I hope to in some way help us all.

 

[LittleLab4CF]

Dank,

To answer your questions, I have used biometric wearable instruments. They were all during more or less challenging athletic fun like RAGBRAI, a week long bicycle ride across Iowa held around the last week of July. Me and fifteen thousand of my friends prove once again that Iowa is not flat. I wore sensors for science on a seven day winter mountaineering expedition that ended up extended a staggering nine days turning into a sixteen day trial. Great data though!

My interest on my bike rides had more to do with a frequent CF issue of heat prostration. Iowa in July hits dew point just before noon. It meant starting peddling around 4:30am, and surprisingly I wasn't alone. I find watching my cardiac output at the high end of cardiopulmonary exercise satisfying and helpful in gearing properly to peddle up a long grade but it lost its novelty because after a while I could read my body.

If a wearabe biometric sensor network provided the data I wanted and the data logging could be displayed and correlated with some flexibility, it would be invaluable. The metrics you list are a great start. Cardiopulmonary information would be essential, body temperature and outside temperature and humidity would be nice.

Would I use one? That's a good question. I'd use one if it gave me useful data for managing my own health. But it would really be great to be able to allow my doctor easy access in a way that makes sense at a glance. A page showing a time graph of vital functions could be invaluable.

This is exciting! Really. If you really want to pursue this, I suggest you consider a virtual corporation. You gather specific individuals and companies whose talents taken together could produce a product in the shortest time and be prepared to manufacture and distribute your idea. Doing it all yourself is possible. Make your best estimate for how long it will take, say 6 weeks, double the number and take it up to the next unit of time. A 6 week project of a novel nature will take a year to deliver. It's a kind of rule I applied whenever requesting a time estimate from my engineering staff when we took on a project with no prior experience with similar requirements.

Keep us posted,

LL

 

[Dank]

That sounds really fascinating. What did you do with the data? You just wore the sensors to help you predict when things would go bad, but you used your bodies own methods of telling you to slow down or to intake more nutrients instead? Is that an accurate summary? Do you think thats because the technology wasn't helpful enough? How do you think the technology could have helped you better during that time?

I'd love to pull pulmonary information, just not sure how to accomplish that right now. I think a portable PFT machines with results paired with the band might be a great thing for that. I'm still working through some of the details. I'm eager to get the sensors and see the data and see how it differs from "mere mortals" (people without CF). Seeing if I can relate anything against CF to non-cf and start from there. Ideally I'd like to get hundreds of people providing me with data, but I'll start with a small sample size first!

I have narrowed it down to the UP3 band with its sensors or the AngelSensor. The AS seems to be a better value because its all OPEN SOURCE! That means I have access to EVERYTHING! The up3 band has limited access to the actual data, but I think I can get a pair of them to start really testing. Ideally I'd like to build a system with some formulas to help people with CF. I do not intend on creating my own bands, just maybe my own software. I have a few people interested in the idea who want to really help out and I will be dragging the community into it too!

I'll keep everyone posted as things develop. I'm very excited to use my IT skillset to help people with CF, hoping I can evolve this into something great for the community.

 

[Dank]

I have an Up3 band coming to me and I'm already doing research on the APIs that I'll need to write.. basically it's the code I have to write to get the data from up's cloud to be able to use the data however I want to. The graphs that Up presents are pretty good, but i think ultimately this raw data will be much better.

So from here I'm looking at this like a trial period, where I'll try to collect data, correlate the data to how I'm feeling each day (I'm going to write an app/website to give me a survey everyday, which I'll relate to the data I am receiving too). Then I'll write automated processes to pull data from up's cloud to my server at home.

Hoping the data I can pull in, paired with the data on how I'm feeling, will let me know if these o2 sensors are useful for someone who has CF, or if the technology isn't quite there yet.

Time and persistence will tell how this idea unfolds.

 

[DmT145]

This was studied a few years ago using Fitbit devices. Most of the users found it to be of little use for a variety of reasons (vesting would register as exercise, biking would not give you an accurate calorie burned count, etc.) It looks good on paper, but it failed to impress beta testers and researchers.

 

[Dank]

A few years ago the advanced sensors weren't out. So I can ultimately see how they would not be that helpful. Admittedly, after using the up3 for several days, the heartrate is the only cool feature I think is helpful - but the time will come when the blood o2 sensors are actually available to the public. I think the physical technology is out right now, just being about to actually use that technology is where we're lacking.

I reached out to the folks at AngelSensor as well, and they are in a similar boat. Luckily for them - i can actually access the data in real-time instead of waiting for a product update (like this up3 band). Both bands have the technology built in but it's not available to the public yet. Hoping the next few months change this. In the shortterm, the band makes me more conscious of sleep, steps, and heartrate. So I guess it has some good purpose.

It'll take awhile for me to build out the interface and the ability to use this data from the bands anyways. So it's at the learning process for me and it will take time to get to where I want to be to be able to use the advanced sensors -I'm still hopeful.

 

[Dank]

I emailed both AS and JB/UP to see if they had any available tools or utilities to my disposal and I received replies from both Jawbone/UP and Angel Sensor. I gave them a brief description about what I was trying to accomplish to see what they can do to help.

Jawbone's reply:
I wanted to circle back with you on your message.Thank you for reaching out... It is amazing to see what people such as yourself are using our technology to accomplish. Unfortunately, at this time there are no resources that we can provide to assist in the research. We do get requests like this from time to time, but at this point our focus is in different areas. In lieu of this, there is nothing more I can do at this time.
I want to thank you for your interest. Wishing you the best in your research!

Angel Sensor:
Thank you for your honest ramblings!
As you may already know, Angel has many research-supporting features, such as continuous monitoring, and unrestricted real-time access to data (including raw waveform signal). Angel is open source and customizable. One additional critical feature is that you own your data! You retain control over how the data is processed and where it is stored, which we believe is crucial for research.Angel’s features include: resting heart rate, skin temperature, steps taken, acceleration energy, vibrating alarm clock, and upgradable firmware. Raw waveform signal for optical heart rate and acceleration is available as well, for research and advanced signal processing (access via landscape mode on smartphones). Blood oxygen tracking is under development. We’ve just announced support for onboard apps in Lua (coming in January).
Angel Sensor apps for iOS or Android are available for download. Please also take a look at our SDK
Angel firmware will be updated using Angel App (either iOS or Android). We will provide ongoing, free over-the-air, software updates as they are developed. Our firmware releases will further unlock Angel’s hardware capabilities: you will be able to log all sensor metrics for up to a week, configure user-defined triggers, enjoy extended battery life, Android App and SDK, and more…
I hope our technology can enable your research. Please let me know if you need more info.