6 ms·

Diabetes - time for open data and disruptive technology

69 points by edent 14y ago

axsar 14y ago
Alex, great article. Check out my startup Infometers.com. We are working to solve this problem and open access to the data siloed on glucose monitoring devices everywhere. Feel free to reach out :) Would love to chat more
j_s 14y ago
Scott Hanselman discusses his diabetes experience occasionally on his blog. http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnologyIn2012.aspx http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnolog... http://www.hanselman.com/blog/HackingDiabetes.aspx http://www.hanselman.com/blog/HackingDiabetes.aspx
inetsee 14y ago
Having a great meter with perfect connectivity would not solve the fundamental problem; you need to record and analyze more than just your glucose measurements. You need to record your glucose measurements, your medications (date, time, dosages), your diet, your exercise, and probably other things I haven't thought of yet. I use a simple set of utilities that make it easy to record date, time and tagged data (glucose, carbs, exercise, etc) in plain text files. That leaves me free to write software to analyze my data any way I want. My goal is to create software that uses Bayesian algorithms to tell me exactly what I need to do (medications, diet, exercise) to keep my glucose measurements nice and flat.
russell 14y ago
You dont need a whole lot of technology beyond a good glucose meter, unless you are a data freak. I just keep a log on pieces of standard printer paper folded to a convenient size. I note the time, reading, insulin dosage, and anything unusual like pasta or a big desert. The main thing I use the record is to see what kind of corrective dosage I should use if my reading is too high or low. Usually it's less than I would have guessed. The main thing that works is to maintain a consistent diet, timing of meals, exercise, and insulin dosage. I consulted with a dietician to plan my meals. It was simple and helped a log.
gurvinder 14y ago
Have a look at this one. http://mydario.com/ http://mydario.com/
blangry 14y ago
@russel - I think for Type 1 diabetes it would be nice to get a bit more data, I was on continuous monitoring for a week and it was incredibly helpful to see a bit more information than 4 readings per day. I think with diabetes, I certainly want the data to be adaptive beyond "constant diet, timing of meals" etc. @j_s - Yes, I think he makes some fantastic points. @inetsee - Yes, lots more variables than BG readings, but getting that right is a good start. @axsar - Thanks, will have a look, although it still relies on proprietary data cable.
- axsar 14y ago
  hi, website does not list all the devices :). I will update it over the holidays downtime. Can you please send me an email with your meter name ( i think said you use the contour USB?)
  - axsar 14y ago
    info@infometers.com
axsar 14y ago
Digitizing this data, making it accesible vs. having it as a printer paper folder, is the first step. Once we have the data, we need to make decisions based on it. Computers are a lot better analyzing 1000s data points from multiple vitals. Main problem is the device connectivity fragmentation.... at Infometers we are working to solve that problem. Reason I say this, send me a names of the diabetes monitor you use - I might already support it.
replicatorblog 14y ago
Great post - All the points you raise are valid. I've been in this business for 8 years, seen a dozen products (HW/SW/Apps) go through FDA/CE approval and end up on store shelves. I co-designed the only product at the Apple retail stores that use blood as a user interface. Most engineers/product people in the industry share your frustration. We're keenly aware of the problems, but it's a problem with the ecosystem and hard to solve at a startup scale. Basically, we're seeing little movement because open data has huge perceived risks and minute upside. + Open Data = Risk: The reason big device companies don't make open APIs for data is that it opens them up to risk. If some 3rd party creates software that uses device data and a patient ends up in a hospital, or worse, who will the family sue? The 2 person startup experimenting with health software, or the multi-billion dollar device company that didn't police every app made with their data? It's slightly irrational, but from the perspective of device company execs, opening data creates huge potential problems and risks with almost no upside. Also, the data privacy laws in the US and Europe scare/confuse many. + Open data attracts almost no customers: Unfortunately, there is no real money making/saving opportunity with data. A lot of promising concepts, but until there is a business model, there won't be a huge amount of focus on this area. Once there is, it will explode. + People won't pay for better products: Most people with diabetes have multiple meters, most of which they receive for free. The device companies work on a razors and blades model so are incented to keep costs down and use retrograde technology. When companies try to make higher quality products, relatively few people buy them. So the best selling market today is a product that was originally designed to be a disposable meter for use in the 3rd world. It's super cheap and does the job while some of the awesome products you mentioned flounder. Diabetes, and healthcare generally is a hugely complex market. The web of stakeholders blows the minds of most people who enter it. It will change eventually, but it's extremely difficult to bring a startup mentality to the industry because it usually requires thinking about physical manufacturing AND opening your company up to regulation AND operating in a Byzantine payment system. Possible, but improbable. If you're working on something in this area, we'd love to talk.
- axsar 14y ago
  Indeed. There needs to be a business model based on patient monitoring device test data. A per data upload value to the health system.
dreamdu5t 14y ago
This post is laughably naive. Get out of your bubble. Very very very few diabetics (less than 1% is my guess) care about any of this data. All they want is a simple, cheap, quick, and painless glucose meter.
- axsar 14y ago
  i think that's thinking inside the BOX or being satisfied with status quo. Most costs/pains of diabetes are from mistakes in care (~75%). The patient manages their condition day to day themselves (99%). Studies have shown that we can catch complications and improve lives by analyzing patient's glucometer data.
ivan_ah 14y ago
Related: [ Anti-apnea devices that are not user-serviceable ] http://www.whattofix.com/blog/archives/2010/06/if-we-told-you.php http://www.whattofix.com/blog/archives/2010/06/if-we-told-yo...
ebiester 14y ago
While I too hate PDF, let me say that a developer could take a PDF parser and since the PDF report is going to be static, it should be easy to extract the information. Not that it's right, but it's possible.
- petepete 14y ago
  As a developer with diabetes, rather than battle with the terrible software that comes with each meter (or at least, each one I've tried in the last 10 years), it's simply easier for me to enter the result into an app[1] on my phone. Yes, I'd rather not have an extra step, but it's so quick (a few seconds) and I always have my phone with me, that it isn't really that much of an inconvenience. This way way, the process stays the same independent of what meter I use, the data is easily exportable and I don't need to use Accu-Check 360°, which is dire. [1] https://play.google.com/store/apps/details?id=com.wonggordon.bgmonitor_donate&feature=more_from_developer&write_review=true#?t=W251bGwsMSwyLDEwMiwiY29tLndvbmdnb3Jkb24uYmdtb25pdG9yX2RvbmF0ZSJd https://play.google.com/store/apps/details?id=com.wonggordon...
Someone 14y ago
Devil's advocate: diabetics do not want data logs, they want a better/longer healthy life. I do not have diabetes, but I would rather have an insulin pump that maintains glucose levels by itself than a meter that allows me to monitor them. And yes, that pump will be imperfect, but it probably will do a better job than you can do yourself, let alone than you will do yourself. I know that, traditionally, patients used glucose level measurements, stared at the numbers, guessed at what caused them and then tried to correct for similar future events, but AFAIK, that has never been very effective. It did give you some sense of being in control, but that was more an illusion than reality. e.g: your blood sugar is high. Is that because you drank a beer last night, because you went to bed late, because you did not sleep well, because you are stressed about something, because you had a fever two days before, because you took the bus to the train station? However, except from the truly bloody obvious, that didn't help much maintaining blood sugar levels, unless you lived like a robot. Normal daily schedules simply vary too much to allow you to determine the true cause of atypical blood sugar level variations. IMO, the time of stand-alone glucose meters has passed, and I do not see how having users process logs will help improve their lives. Reading individual measurements definitely will, but that is so that you can react at short notice, and adjust insulin intake.
- Adirael 14y ago
  Thank you. I've been a diabetic for 14 years and that's exactly how I feel. The only way I can have perfect glucose levels is to live like a robot: wake up every day at the same time, eat exactly the same measured amount of food, check my glucose level every time my alarm beeps and do nothing out of the ordinary. I'm trying to exercise more and the diabetes is the biggest barrier, I'm like a roller coaster right now. I don't want to stare at a graph and do even more calculations, I want those calculations done by a machine, which can infuse insuline constantly and use more or less depending on my glucose trend. There are new technologies out there, like this CGM [1] (continuous glucose monitor) which is very small and wireless (minilink minimed) which IIRC can work with an insulin pump (there is one that's very similar, wireless too, with a reservoir for three days of insulin) [1] http://www.diabeteshealth.com/media/images/article_images/5060.jpg http://www.diabeteshealth.com/media/images/article_images/50... The problem? Price. Most insurances won't cover this, the initial purchase is not cheap and the maintenance cost a lot too.
imcrs 14y ago
What I would like to see is an integrated system where the a continuous monitoring device comes with the insulin pump and communicates with it automatically. I want open data as well and good software, but more importantly, I'd like to have a device that learns from my habits and recommends adjustments automatically. It would save me the hassle of having to pore through my glucose readings and think about everything every 1-2 weeks, which is what's required of me now to maintain my health (and which I'm negligent on). And I'd like my insurance to cover it, but that's an entirely different story.
codva 14y ago
For about 2 years I had to keep an old XP box in the corner just to boot it up every 90 days get the data off my wife's MiniMed meter and pump. They didn't support anything newer than XP until 2011, let alone any hope of not needing Windows. Great article.
pebb 14y ago
research bitter melon
brennanm 14y ago
https://deebo.com/ https://deebo.com/ - was a cool project that aimed to do just that. I'm not sure why they stopped, but perhaps they have some findings...
jimrandomh 14y ago
The diabetes market is already being disrupted, by Dexcom, which makes continuous sensors, and which appears to be iterating every few years. You calibrate them every 12 hours or so, they last a week, and they give a sample every 5 minutes or so, at a cost of about $600+$100/week of consumables. The software isn't great, but it gets the job done and it'll download data over an included USB cable and export to CSV if you just want a spreadhsheet.

69 points by edent 14y ago

axsar 14y ago

Alex, great article. Check out my startup Infometers.com. We are working to solve this problem and open access to the data siloed on glucose monitoring devices everywhere. Feel free to reach out :) Would love to chat more

j_s 14y ago

Scott Hanselman discusses his diabetes experience occasionally on his blog. http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnologyIn2012.aspx http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnolog... http://www.hanselman.com/blog/HackingDiabetes.aspx http://www.hanselman.com/blog/HackingDiabetes.aspx

inetsee 14y ago

Having a great meter with perfect connectivity would not solve the fundamental problem; you need to record and analyze more than just your glucose measurements. You need to record your glucose measurements, your medications (date, time, dosages), your diet, your exercise, and probably other things I haven't thought of yet. I use a simple set of utilities that make it easy to record date, time and tagged data (glucose, carbs, exercise, etc) in plain text files. That leaves me free to write software to analyze my data any way I want. My goal is to create software that uses Bayesian algorithms to tell me exactly what I need to do (medications, diet, exercise) to keep my glucose measurements nice and flat.

russell 14y ago

You dont need a whole lot of technology beyond a good glucose meter, unless you are a data freak. I just keep a log on pieces of standard printer paper folded to a convenient size. I note the time, reading, insulin dosage, and anything unusual like pasta or a big desert. The main thing I use the record is to see what kind of corrective dosage I should use if my reading is too high or low. Usually it's less than I would have guessed. The main thing that works is to maintain a consistent diet, timing of meals, exercise, and insulin dosage. I consulted with a dietician to plan my meals. It was simple and helped a log.

gurvinder 14y ago

Have a look at this one. http://mydario.com/ http://mydario.com/

blangry 14y ago

@russel - I think for Type 1 diabetes it would be nice to get a bit more data, I was on continuous monitoring for a week and it was incredibly helpful to see a bit more information than 4 readings per day. I think with diabetes, I certainly want the data to be adaptive beyond "constant diet, timing of meals" etc. @j_s - Yes, I think he makes some fantastic points. @inetsee - Yes, lots more variables than BG readings, but getting that right is a good start. @axsar - Thanks, will have a look, although it still relies on proprietary data cable.

axsar 14y ago
hi, website does not list all the devices :). I will update it over the holidays downtime. Can you please send me an email with your meter name ( i think said you use the contour USB?)
- axsar 14y ago
  info@infometers.com

axsar 14y ago

Digitizing this data, making it accesible vs. having it as a printer paper folder, is the first step. Once we have the data, we need to make decisions based on it. Computers are a lot better analyzing 1000s data points from multiple vitals. Main problem is the device connectivity fragmentation.... at Infometers we are working to solve that problem. Reason I say this, send me a names of the diabetes monitor you use - I might already support it.

replicatorblog 14y ago

Great post - All the points you raise are valid. I've been in this business for 8 years, seen a dozen products (HW/SW/Apps) go through FDA/CE approval and end up on store shelves. I co-designed the only product at the Apple retail stores that use blood as a user interface. Most engineers/product people in the industry share your frustration. We're keenly aware of the problems, but it's a problem with the ecosystem and hard to solve at a startup scale. Basically, we're seeing little movement because open data has huge perceived risks and minute upside. + Open Data = Risk: The reason big device companies don't make open APIs for data is that it opens them up to risk. If some 3rd party creates software that uses device data and a patient ends up in a hospital, or worse, who will the family sue? The 2 person startup experimenting with health software, or the multi-billion dollar device company that didn't police every app made with their data? It's slightly irrational, but from the perspective of device company execs, opening data creates huge potential problems and risks with almost no upside. Also, the data privacy laws in the US and Europe scare/confuse many. + Open data attracts almost no customers: Unfortunately, there is no real money making/saving opportunity with data. A lot of promising concepts, but until there is a business model, there won't be a huge amount of focus on this area. Once there is, it will explode. + People won't pay for better products: Most people with diabetes have multiple meters, most of which they receive for free. The device companies work on a razors and blades model so are incented to keep costs down and use retrograde technology. When companies try to make higher quality products, relatively few people buy them. So the best selling market today is a product that was originally designed to be a disposable meter for use in the 3rd world. It's super cheap and does the job while some of the awesome products you mentioned flounder. Diabetes, and healthcare generally is a hugely complex market. The web of stakeholders blows the minds of most people who enter it. It will change eventually, but it's extremely difficult to bring a startup mentality to the industry because it usually requires thinking about physical manufacturing AND opening your company up to regulation AND operating in a Byzantine payment system. Possible, but improbable. If you're working on something in this area, we'd love to talk.

axsar 14y ago
Indeed. There needs to be a business model based on patient monitoring device test data. A per data upload value to the health system.

dreamdu5t 14y ago

This post is laughably naive. Get out of your bubble. Very very very few diabetics (less than 1% is my guess) care about any of this data. All they want is a simple, cheap, quick, and painless glucose meter.

axsar 14y ago
i think that's thinking inside the BOX or being satisfied with status quo. Most costs/pains of diabetes are from mistakes in care (~75%). The patient manages their condition day to day themselves (99%). Studies have shown that we can catch complications and improve lives by analyzing patient's glucometer data.

ivan_ah 14y ago

Related: [ Anti-apnea devices that are not user-serviceable ] http://www.whattofix.com/blog/archives/2010/06/if-we-told-you.php http://www.whattofix.com/blog/archives/2010/06/if-we-told-yo...

ebiester 14y ago

While I too hate PDF, let me say that a developer could take a PDF parser and since the PDF report is going to be static, it should be easy to extract the information. Not that it's right, but it's possible.

petepete 14y ago
As a developer with diabetes, rather than battle with the terrible software that comes with each meter (or at least, each one I've tried in the last 10 years), it's simply easier for me to enter the result into an app[1] on my phone. Yes, I'd rather not have an extra step, but it's so quick (a few seconds) and I always have my phone with me, that it isn't really that much of an inconvenience. This way way, the process stays the same independent of what meter I use, the data is easily exportable and I don't need to use Accu-Check 360°, which is dire. [1] https://play.google.com/store/apps/details?id=com.wonggordon.bgmonitor_donate&feature=more_from_developer&write_review=true#?t=W251bGwsMSwyLDEwMiwiY29tLndvbmdnb3Jkb24uYmdtb25pdG9yX2RvbmF0ZSJd https://play.google.com/store/apps/details?id=com.wonggordon...

Someone 14y ago

Devil's advocate: diabetics do not want data logs, they want a better/longer healthy life. I do not have diabetes, but I would rather have an insulin pump that maintains glucose levels by itself than a meter that allows me to monitor them. And yes, that pump will be imperfect, but it probably will do a better job than you can do yourself, let alone than you will do yourself. I know that, traditionally, patients used glucose level measurements, stared at the numbers, guessed at what caused them and then tried to correct for similar future events, but AFAIK, that has never been very effective. It did give you some sense of being in control, but that was more an illusion than reality. e.g: your blood sugar is high. Is that because you drank a beer last night, because you went to bed late, because you did not sleep well, because you are stressed about something, because you had a fever two days before, because you took the bus to the train station? However, except from the truly bloody obvious, that didn't help much maintaining blood sugar levels, unless you lived like a robot. Normal daily schedules simply vary too much to allow you to determine the true cause of atypical blood sugar level variations. IMO, the time of stand-alone glucose meters has passed, and I do not see how having users process logs will help improve their lives. Reading individual measurements definitely will, but that is so that you can react at short notice, and adjust insulin intake.

Adirael 14y ago
Thank you. I've been a diabetic for 14 years and that's exactly how I feel. The only way I can have perfect glucose levels is to live like a robot: wake up every day at the same time, eat exactly the same measured amount of food, check my glucose level every time my alarm beeps and do nothing out of the ordinary. I'm trying to exercise more and the diabetes is the biggest barrier, I'm like a roller coaster right now. I don't want to stare at a graph and do even more calculations, I want those calculations done by a machine, which can infuse insuline constantly and use more or less depending on my glucose trend. There are new technologies out there, like this CGM [1] (continuous glucose monitor) which is very small and wireless (minilink minimed) which IIRC can work with an insulin pump (there is one that's very similar, wireless too, with a reservoir for three days of insulin) [1] http://www.diabeteshealth.com/media/images/article_images/5060.jpg http://www.diabeteshealth.com/media/images/article_images/50... The problem? Price. Most insurances won't cover this, the initial purchase is not cheap and the maintenance cost a lot too.

imcrs 14y ago

What I would like to see is an integrated system where the a continuous monitoring device comes with the insulin pump and communicates with it automatically. I want open data as well and good software, but more importantly, I'd like to have a device that learns from my habits and recommends adjustments automatically. It would save me the hassle of having to pore through my glucose readings and think about everything every 1-2 weeks, which is what's required of me now to maintain my health (and which I'm negligent on). And I'd like my insurance to cover it, but that's an entirely different story.

codva 14y ago

For about 2 years I had to keep an old XP box in the corner just to boot it up every 90 days get the data off my wife's MiniMed meter and pump. They didn't support anything newer than XP until 2011, let alone any hope of not needing Windows. Great article.

pebb 14y ago

research bitter melon

brennanm 14y ago

https://deebo.com/ https://deebo.com/ - was a cool project that aimed to do just that. I'm not sure why they stopped, but perhaps they have some findings...

jimrandomh 14y ago

The diabetes market is already being disrupted, by Dexcom, which makes continuous sensors, and which appears to be iterating every few years. You calibrate them every 12 hours or so, they last a week, and they give a sample every 5 minutes or so, at a cost of about $600+$100/week of consumables. The software isn't great, but it gets the job done and it'll download data over an included USB cable and export to CSV if you just want a spreadhsheet.