Why is no medical establishment or any pump company doing a sanity check on the data they are getting?
No doctor even questions if someone is CORRECTLY calibrating a sensor, if they are using the current blood sugar reading to calculate a meal bolus, etc....
I do NOT believe the pump/sensor/meter combo is anywhere near "good enough" to make a decision about someone's care, I am ONLY suggesting that something which would upload all available data, do a "sanity check" on it (look at the papers from latest ADA conference on number of people WITH the CGMS and other good equipment who do NOT properly utilize or even calibrate it). If the ONLY advantage of the system was a) to set all the clocks correctly b) ensure the person is correctly calibrating c) ensure blood glucose readings for their correction bolus d) check pattenrs and overall control for major changes then we have already accomplished quite a bit.
Help user to stop eating in evening for long enough to be dealing only with basal insulin. This is NOT a perfect system (is he ill, is he under pressure, is his system correctly calibrated) but it IS a first step to getting a basal rate that is correct set up. Once that is set, work around the clock in as many small steps as needed to ensure that basal is good.
Determine the lead time between insulin bolus and blood sugar drop (will change depending on the current carb load, the current blood sugar, the general health and happiness of person, etc.)
Determine the lead time between food and blood sugar rise (and this will change depending on types AND amounts)
Using the above, intelligent suggestions can be made to the patient, their care team or their medical team about adjusting how much and when to give meal boluses.
Speaking just for myself, the last thing in the world I want is someone "checking on my data" and giving me advice about my D management. Nobody knows as much about it as me. Recently when my A1C had gone up my doctor said, "we'll work on getting those blood sugars back down". I corrected her: "I will work on getting those blood sugars back down." If I wanted to be mean I would have asked her if she knows what that entails (her answer would probably be something like "eat less sugar" - to someone who hasn't eaten any sugar for 20 years). I also didn't bother asking her how many other type 1's she saw who had A1C's of 6.9, let alone the 5.9 of my last one.
I don't need someone to explain to me "how to stop eating in the evening to do a basil test - can we say infantalizing? Nor do I need a machine to help me figure all the things mentioned above. I can figure them out quite well myself. And if I run into something unfamiliar and puzzling I post on here and get the benefit of 30,000 PWDs' experience. I started on Medicare in November and every six months have to fill out 4 weeks worth of test logs to "prove" I'm using the amount of test strips I am. That is quite enough big brother for me.
I think it a bit presumptuous to assume that, because you haven't been exposed to this sort of feedback, it isn't happening.
As a matter of fact, I know for sure it is. However, if you're not in the study group, you'd never know.
Data taken in an uncontrolled, random anecdotal manner from patient self-offered testimonials is nearly worthless. It's a self-selected sample, and therefore is guaranteed not to represent the overall population.
I didn't know this sort of thing was going on until I asked. I was then asked if I was interested in participating. Said no when the record-keeping requirements were spelled out :-)
I do NOT believe the pump/sensor/meter combo is anywhere near "good enough" to make a decision about someone's care
I respectfully disagree.
My pump, CGM, and meter together provide sufficient information for me to manage my diabetes safely, and with excellent control. The biggest variable -- and opportunity for screwup -- is my own brain... ME.
The data's there, and it's plenty good enough for treatment decisions. It's starts to go off the rails when I choose to make a treatment decision based on CGM data when the CGM is nagging me to calibrate it. And I'm too lazy to do a fingerstick before making my treatment decision.
Just one example where things can go wrong because of "bad" data that I knew wasn't reliable in the first place.
BTW, one bad hypo ago, and I don't do that any more.
I'm unsure of the point you're trying to make regarding diabetes data and the medical establishment and diabetes technology companies.
Are you saying that the accuracy and precision of the data that the various diabetes devices collect is not good enough to use to make treatment decisions? I would agree that these devices should be more accurate and precise. I make insulin dosing decisions every day based on meter readings that only require a very loose +/- 20% accuracy. And I use that imperfect meter to calibrate my CGM. That makes no sense.
That being said, I have been able to do quite well with these imperfect tools, but I must remain constantly vigilant knowing I deal with inaccurate data.
Even if all our tech tools were accurate and precise, diabetes is still a wily foe that we can never fully quantify. There is a "X-factor" in blood glucose management that I don't believe can be measured or predicted with data. This comprises the art of diabetes management.
I agree that some fundamental data management good practice techniques could help us. Setting the ■■■■ on a BG meter is one such basic practice. Very few people rely on all the data available to inform their choices every day. Surveys have shown that few people upload their devices regularly and use that data and information to enhance their ongoing treatment decisions.
I would not trust the average clinician to give me useful advice regarding my day-to-day and moment-to-moment glucose management. They are more effective in the larger picture arena looking for longer term trends and diabetes complications. I used to expect endocrinologists to be glucose tactic experts. What was I thinking??! Most clinicians only know the basic rules like insulin dosing should be based on the carbohydrate content of food. If you ask them about dosing based on protein and fat, most would be perplexed.
I agree with you that there exists some "best practices" that could be utilized with diabetes management. Patients, doctors, and diabetes tech companies, however, all have diverging interests. Throw in the regulatory agencies such as the US FDA and it gets even more complicated.
In conclusion, I believe that diabetes data deserves a central role in treating diabetes. The more accurate and precise the data, the better it is for us. Even if we had all the data and it was accurate and precise, there is still enough variability in how our bodies perform that perfect data is still not the complete answer.
Interesting rant! I don't need a sanity check for my device. I can make intelligent decisions and adjustments without asking anyone. I don't use the sensor part of the pump, but do just fine with the meter checks to figure things out. I am surprised at the number of people who are wearing insulin pumps and cgm's without any training. While that is not necessarily insane it sure isn't safe or smart. I got a chuckle out of your advantage 1.a) - to set all the clocks correctly. My pump does not set clocks.
I don’t think that an app paradigm, that would run everything, is approved by the FDA. The Artificial Pancreas is working on that, but who knows how that will play out. Many insurers are posting notices and policies that suggest they will not cover them anyway so, unless you have the dough on hand to pay for it, your desire for the gizmo is going to be disappointed. I think it’s better to apporoach diabetes as an art, rather than a science. It’s a very scientific art but it can be useful to turn off your computer, like Luke, when he blew up the Death Star