
Diabetes - time for open data and disruptive technology - edent
http://alexblandford.tumblr.com/post/38725722842/blood-sugar
======
Someone
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
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/50...](http://www.diabeteshealth.com/media/images/article_images/5060.jpg)

The problem? Price. Most insurances won't cover this, the initial purchase is
not cheap and the maintenance cost a lot too.

~~~
jimrandomh
> The problem? Price. Most insurances won't cover this, the initial purchase
> is not cheap and the maintenance cost a lot too.

I hear that a lot, but I think this may be a cached judgment and not be
accounting for recent decreases in price and increases in CGM sensor quality.
If you haven't asked your insurance recently, ask again.

~~~
Adirael
I live in Spain and have no private insurance. Privates won't cover me because
of the pre existing condition, if I had private insurance before being a
diabetic they may have covered me, but things like CGMs and pumps always need
a fight.

Public insurance won't cover CGMs right now and are hesitant to give out
pumps. I checked yesterday again, a Dexcom G4 [1] is around 1.5K, and I would
need around 200€ each month on sensors.

I'll probably end buying one out of pocket, but it's not something most people
can afford!

[1]
[http://farm9.staticflickr.com/8457/8066666840_465937321d_o.j...](http://farm9.staticflickr.com/8457/8066666840_465937321d_o.jpg)

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replicatorblog
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.

~~~
blangry
I get that. I really do, just wanted to vent! My clinic showed me the iPhone
one the other day, and honestly, I would add using the 30 pin connector in
with the other proprietary cables thing. Which is a shame as it is /almost/
there. Just presumably if your iPhone dies, then you can't test which is a
potential problem.

~~~
replicatorblog
No worries, I just wanted to let you know that we vent about the same things!
It drives us nuts that we can't move as fast as more consumer focused tech
companies.

Re: the iPhone meter - we designed it to have its own battery and display, so
even if your iPhone dies, the meter has enough charge to last 10 or so days,
and a separate power cord to charge it for more. There was no way we'd tether
a person's ability to test to a failing phone battery:)

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inetsee
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.

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j_s
Scott Hanselman discusses his diabetes experience occasionally on his blog.

[http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnolog...](http://www.hanselman.com/blog/TheSadStateOfDiabetesTechnologyIn2012.aspx)

<http://www.hanselman.com/blog/HackingDiabetes.aspx>

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russell
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.

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axsar
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

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codva
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.

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imcrs
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.

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gurvinder
Have a look at this one.

<http://mydario.com/>

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blangry
@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
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
info@infometers.com

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jimrandomh
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.

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axsar
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.

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

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dreamdu5t
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
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.

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ebiester
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
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...](https://play.google.com/store/apps/details?id=com.wonggordon.bgmonitor_donate&feature=more_from_developer&write_review=true#?t=W251bGwsMSwyLDEwMiwiY29tLndvbmdnb3Jkb24uYmdtb25pdG9yX2RvbmF0ZSJd)

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brennanm
<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...

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pebb
research bitter melon

