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A $250 Biohack That’s Revolutionizing Life with Diabetes

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Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#111

Post by bigtunacan »

saurik wrote: post #92
dekhn wrote: post #70

Earlier quoted context omitted.

Hi- I used to work in regulated pharma and I want to be clear: " The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong" is a misleading statement. The reason everything is regulated is that sometimes things do go wrong, and it's necessary to have root cause attribution so the problem can be remedied an…

FWIW, your comment has now made me despise your industry. Just thought you should understand that you aren't convincing. At all. (And to be very clear, before reading your comment I would have just assumed incompetence, but now I am going to go so far as claim active malice.) Context: I spent five years dating someone who was diabetic and relied on insulin pumps after spending years working closely alongside a good f…

Context: I am a type 1 diabetic.

As far as doctors are concerned I am an exemplary patient who has shown blood glucose controls as good as they come (A1C of less than 6.5 for more than a decade now for those that know what it means).

I regularly hear from "concerned" people how they know someone else who's blood control isn't as good and they should do better, etc..., etc...

I have personally used some of these DIY products and so I want to be very clear; the difference between "somewhat poorly controlled blood sugar" and just one really bad mistake in "tightly/ best-controlled blood sugar" is this

1) Poorly controlled - in a decade I will start to have some additional health problems (vision impairment/neuropathy/etc)

2) Tightly controlled w/dosing mistake - Coma/Brain Dead/Dead

There is a good reason to test this equipment and take a conservative approach.

Physical activity level and how much active or "on board" insulin you need when you are being active vs inactive can vary by 10x. As an example of this; before I do cardio workouts I intentionally do a carb load and let my blood sugar raise before starting to counter the effect the exercise will have on my blood sugar. Despite this on two occasions during running I have experienced double drops (super fast blood sugar drop to unsafe levels) to levels so low I started to black out.

Nightscout/OpenAps/Dexcom/Medtronic, it doesn't matter open source or closed source none of these devices can handle these scenarios so at the end of the day it is still on me to intervene and make decisions based on what I am going to do. Until something better than pump systems come along (and these "artificial pancreas" systems as they are calling them to day are still just pump systems; I will have to intervene no matter how sophisticated the algorithms.

In summary; just because you care about someone with diabetes, do not presume you know what is best for us.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#112

Post by exDM69 »

acqq wrote: post #110
exDM69 wrote: post #107

Earlier quoted context omitted.

How do you tell that the glucose reading measured from blood (the old way) is correct? You can't. The new method is not worse than the old in this respect. And again, you get at least 8 hours of history graphed on the display now. If it doesn't look sensible (w.r.t eating and insulin doses), you need a backup. If the old fashioned blood glucose meter gives a wrong reading, you are much worse off. Note that the sensor…

Old way: you repeat the measurement nothing is in your body. and you konw di you feel e.g. hypo. New way: the sensor needle is simply a little off (in stays sticked). You don’t know, the software doesn’t know. The sensor is not magic that works 100% of the time, it ends in a needle sticked in your body, many ways to go wrong, even if it worked a while. And the danger of “fully automatic” is there.

Just to clarify, we were only discussing monitoring and sensors in this subthread. Not closed loop pump systems.

A sensor failure in closed loop is dangerous. I do not know how the control software detects and deals with this. I have no experience with them.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#113

Post by jimrandomh »

dekhn wrote: post #70
jimrandomh wrote: post #16

The article, strangely, leaves out the name of the project it's reporting on. It's OpenAPS, http://openaps.readthedocs.io/en/latest/ . I use it and have worked on the code. It's a massive health and quality of life improvement over anything that exists which is FDA approved. The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blam…

Hi- I used to work in regulated pharma and I want to be clear: " The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong" is a misleading statement. The reason everything is regulated is that sometimes things do go wrong, and it's necessary to have root cause attribution so the problem can be remedied an…

I think it may help to have some specifics about what, exactly, the regulations are screwing up here.

Every type 1 diabetic has some parameters that they use to determine how much insulin they need: an insulin to carb ratio, an insulin sensitivity factor, and a basal rate (or several basal rates for different times of day). The way these parameters are traditionally managed is that your devices collect data about your carbohydrate intake and glucose at various times of day, and every 3 or 6 months you bring those devices to an endocrinologist's office where they print them out, a doctor looks at the printouts, and the doctor suggests tweaks to the parameters. This process works very poorly, first of all because 3-6 months is too infrequent, and second because calculating the correct parameter tweak requires a whole lot of math, not just looking at a printout.

The way it works in OpenAPS is that a program runs nightly, looks at historical data, figures out the correct parameter tweak, and applies it for the next day. This works much better. Much better long term health, much better quality of life, much lower short-term risk of death. But if someone dies, there's no doctor to pin it on. So device makers don't include that feature.

(This is the clearest example, but there are others as well. There are also things like where alert thresholds are set; too few alerts and you're at risk of failing to alert the user to something important, too many alerts and you cause alert fatigue and impact quality of life.)

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#114

Post by leekyle333 »

bunderbunder wrote: post #101
NPMaxwell wrote: post #88

Earlier quoted context omitted.

Yes. It is the "ensuring the manufacturer can't be blamed if something goes wrong" mindset that says, "it's necessary ... if somebody did something illegal or dumb, they can be sanctioned". Another approach would be to focus on patients and ignore punishments. Which is what the hackers are doing: ignoring rewards and punishments that are driving professionals in the field.

Not necessarily even illegal or dumb. One of the things about testing drugs and medical devices is, you really can't cover all your bases. It would be too expensive to construct a clinical trial with the statistical power necessary to reliably detect very rare side effects. I don't think anyone wants to delay releasing all new drugs to the market by 40 years so that we can be sure about what happens if you take it ov…

Insulin is incredibly expensive and is manufactured by some of the companies making these devices. I wonder how much less insulin people use with these devices?

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#115

Post by jimrandomh »

bigtunacan wrote: post #111
saurik wrote: post #92

Earlier quoted context omitted.

FWIW, your comment has now made me despise your industry. Just thought you should understand that you aren't convincing. At all. (And to be very clear, before reading your comment I would have just assumed incompetence, but now I am going to go so far as claim active malice.) Context: I spent five years dating someone who was diabetic and relied on insulin pumps after spending years working closely alongside a good f…

Context: I am a type 1 diabetic. As far as doctors are concerned I am an exemplary patient who has shown blood glucose controls as good as they come (A1C of less than 6.5 for more than a decade now for those that know what it means). I regularly hear from "concerned" people how they know someone else who's blood control isn't as good and they should do better, etc..., etc... I have personally used some of these DIY p…

OpenAPS doesn't mean you never have to intervene, nor does it claim to. It does mean that the interventions needed are less frequent and more predictable. Ie, in the case of exercise--if it's only a small drop, shutting off basal is enough to counteract it, so it'll do that, and you don't have to do anything. If it's a larger drop, you need to eat carbs to counter it--and it'll send you a notification telling you how many carbs you need to eat, and this notification will typically come quite a bit earlier than the low-glucose alarm the CGMS will eventually send.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#116

Post by dekhn »

jimrandomh wrote: post #113
dekhn wrote: post #70

Earlier quoted context omitted.

Hi- I used to work in regulated pharma and I want to be clear: " The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong" is a misleading statement. The reason everything is regulated is that sometimes things do go wrong, and it's necessary to have root cause attribution so the problem can be remedied an…

I think it may help to have some specifics about what, exactly, the regulations are screwing up here. Every type 1 diabetic has some parameters that they use to determine how much insulin they need: an insulin to carb ratio, an insulin sensitivity factor, and a basal rate (or several basal rates for different times of day). The way these parameters are traditionally managed is that your devices collect data about you…

When you say OpenAPS "works much better", while I believe that in general is probably true, how exactly do you know? Is somebody monitoring the OpenAPS fleet and its users? If something did go wrong, would you be able to recover the decision process that led to the incorrect dosing?

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#117

Post by jimrandomh »

dkarl wrote: post #35
jimrandomh wrote: post #16

The article, strangely, leaves out the name of the project it's reporting on. It's OpenAPS, http://openaps.readthedocs.io/en/latest/ . I use it and have worked on the code. It's a massive health and quality of life improvement over anything that exists which is FDA approved. The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blam…

Thank you for this work. Do you know why the applicability to type two diabetes is not as clear as for type one? I'd love to read more about that. The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong. I live with someone who has a CGM (continuous glucose monitor) where the device came in a box with an…

I'm not really an expert on T2DM (I'm T1), but I believe the main issue is going to be that insulin sensitivity is much more variable for T2s than T1s, and will change faster than autosens can keep up with.

The reason for the mixed messaging about treatment decisions is that the Dexcom G4/G5 (they're the same sensor with a different receiver) spent part of its product life not approved for use as a basis for treatment decisions, and was later approved for use as a basis for treatment decisions, but only under certain circumstances. There are some best-practices around CGM sensors that the manufacturers won't tell you about, like pre-soaking sensors, which greatly improve reliability. And, counter-intuitively, a closed-loop system is actually less demanding of sensor precision than a human giving correction boluses would be.

For OpenAPS, getting started involves installing Linux on an IoT board, setting up a server on Heroku, and monitoring log files. Tech savvy is definitely required, but mostly for setup, and occasional troubleshooting; if you have a tech-savvy person willing to put some time into it, the can set it up, show you how to monitor it, and then step away.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#118

Post by jimrandomh »

trampypizza wrote: post #56
exDM69 wrote: post #54

Earlier quoted context omitted.

My SO has a continuous glucose monitoring, and as you say, the reading lags behind by 15-30 minutes compared to measurement from blood. But the blood measurement is a single, instantaneous value while the GCM meter shows the last 8 hour glucose levels plotted and the current upward/downward trend. While it takes a bit of cross-referencing between blood and tissue glucose levels to get used to the readings, it actuall…

> it actually provides better information to base decisions on (fast acting) insulin dosage Would you say that's because you can get a better idea of trends once you have enough data? My understanding has always been that the true value in a CGM is revealing those trends and patterns that are really unique to the person and that are hard to spot with regular glucose testing. EDIT: I realise that this is basically wha…

It helps with figuring out long-term trends, but it's also an improvement even for a single snapshot-in-time decision. If your blood glucose is 150mg/dL and you're trying to get it to 100mg/dL, the difference between "150mg/dL and rising 3mg/dL/min" and "150mg/dL and falling 3mg/dL/min" is the difference between wanting insulin and wanting carbohydrates.

Re: A $250 Biohack That’s Revolutionizing Life with Diabetes

#120

Post by jimrandomh »

seehafer wrote: post #23
jimrandomh wrote: post #16

The article, strangely, leaves out the name of the project it's reporting on. It's OpenAPS, http://openaps.readthedocs.io/en/latest/ . I use it and have worked on the code. It's a massive health and quality of life improvement over anything that exists which is FDA approved. The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blam…

> The core problem is that the FDA-approved devices are optimized not for getting the best result, but for ensuring the manufacturer can't be blamed if something goes wrong No, they're optimized for reducing risk as much as possible. The amount of scrutiny on a commercial product from a Fortune 200 company is about 2 orders of magnitude more than any DIY project would ever get.

It's the difference between risk of death, and risk of getting sued. The DIY project has a much lower risk of death, but (if a corporation were to do the same thing) a much higher risk of getting sued.
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