Tidepool Loop, one year in: A development update

Tidepool is a nonprofit organization that is developing an automated insulin dosing algorithm that it intends to submit for FDA approval and integrate with commercially available and compatible insulin pumps and CGMs. Medtronic, Insulet and Dexcom are all working with Tidepool to integrate some of their products. Tidepool’s Loop base computer code is the do-it-yourself open-source Loop system that I’ve been using since November 2016.

Tidepool Loop, once it is FDA-approved and deployed, will work with certain in-warranty pumps and CGMs. This designation will pave the way for full doctor and insurance payer support. No date yet for expected deployment but thought this update from Christopher Snider, community manager, provides some important detail.

Tidepool Loop, one year in: A development update

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From the link:

“We’re building out our online prescription process and platform, so healthcare providers will be able to enter Tidepool Loop settings in-clinic during an appointment.”

Hopefully this doesn’t mean settings are control only by the hcp.

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I think what this means is that Tidepool is anticipating the needs of the doctors and will provide education for the doctors to enhance the care they give to the average patient.

The patients’ needs do run across an entire spectrum and some of us do not need much help with changing settings. I would bristle at any clinician who tried to control my system settings. I’ve made it very clear to my providers that I need little, if any, glucose management help. They seem to understand that and the charts I bring to each visit back up my beliefs with hard data.

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Hi. Tidepool Community Manager here.

The intent is that your doctor will fill in your initial settings, hopefully in collaboration with you, during the initial setup process through an online portal so you’ll have everything ready to go when you get started. The specific process and flow is still being worked out, but our goal is for everyone to feel informed at every step along the way.

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Thanks for the response. Good with hcp being informed, just don’t want them controlling my settings.

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That would be a deal breaker for me. My doctor exists only to write my prescriptions.

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This sounds similar to when Caleb started pumping after diagnosis - we established all his settings together, but adjusted them on our own or with Caleb’s medical team’s advice as necessary.

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Your diabetes. Your control.

Again, the intent is that you’re collaborating with your doctor from the start, especially since Tidepool Loop will require a prescription. But once you’re up and running, you’re in control.

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So if they input the settings, are you able to go in and change the settings before it’s actually in use? And they have no further access to it?

It would be a no go for me too if the endo set up my settings and I had to start with theirs or they had access to it at all.

Plus will we get a choice to our own A1C goal or Bg level goals or is “you can’t go below a 6% goal” type thing?

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The final system is still being designed and implemented. Again, the goal is for you and your doctor to discuss your initial settings together - they will input those settings as part the prescription process - those initial settings will be applied to your account when you first setup Tidepool Loop - and after that you’re in control.

We intend for your doctor to be able to see your settings, whatever they may be, from their own Tidepool Clinician account. See, but not edit.

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Marie, I understand your skepticism with any system that might impair the person with diabetes’ ability to exert the ultimate control over our individual glucose management. We must acknowledge that any commercial automated insulin dosing system must make choices that serve the entire spectrum of motivation and abilities that exists in our ranks. People like us, who participate at this forum, do not represent well the population of people with diabetes.

I have a feeling that the people at Tidepool who are making these kind of system hardware/software/clinical choices are more like us and they also value the independence of action that we do. But Tidepool must satisfy a regulator’s requirements and build a system that serves all people with diabetes. I am confident that Tidepool can thread that needle well.

Well said, Christopher. Thanks for adding to this thread.

I am in the ranks of the younger elders and realize that my DIY Loop system will not transition well as I age and my needs and abilities change. I will need to rely on systems like Tidepool Loop and it appears that that future is much better than the current status quo where caregivers and medical professionals just don’t have the knowledge/motivation/resources that I currently devote to my care.

Tidepool Loop gives me hope that it can provide me with better health and quality of life as I age. I thank you and all the Tidepool team for changing the trajectory of future diabetes care for us seniors.

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@Christopher_Snider I love the fact that you are developing a loop system. I have kept eyeing the DIY Loop to use and just haven’t yet.

This will help a lot of people out there, @Terry’s right, a lot of us on this board do have a tendency to want more control than most.

Yes, it’s a great thing for a lot of T1’s! So Thank You!

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I have been Looping for almost a year and donating all my data to Tidepool. I am enthralled with my Loop and have it completely optimized to my settings. I have no interest in actually changing to a tidepool loop. The only difference for me would be not using a RileyLink anymore. But I am okay with still using my RL.

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I share your enthusiasm with DIY Loop. It’s improved my BG levels, reduced BG volatility, and done so with less help from me. It’s an incredible tool and my only complaint is that it is not universally available for a variety of reasons.

Tidepool rolled up its sleeves and got to work on those tough to solve problems, like getting FDA approval. There are no deep-pocket corporate efforts to do this work. We are lucky that the non-profit sector decided to step in where the free marketeers would not venture.

I trust that the Tidepool product will contain much of what we love about DIY looping. Why do I feel this optimism? I’ve read that Tidepool is staffed predominantly with people with T1D or have a loved one with T1D. These talented people are not in this enterprise for economic reasons; they’re in it due to their personal stake in the outcome. They feel passion for this mission.

If they succeed, the people who benefit will dwarf the current population enjoying DIY Loop.

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I agree Tidepool has made great progress with staff who have skin in the game. I think a DIY effort from people who care deeply about putting out a product that is safe, user friendly, and takes the burden of constant blood glucose management away would be a dream. This is what I find with loop. Lots of input, many brilliant minds tweaking things so I can pay less attention to the day to day bg management.

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Terry I totally agree. Skin in the game leads to far better outcomes. The fact that all these brilliant people came together to develop Loop and support it and continue to tweak it and make it even more seamless without a paycheck throughout renews my previously flagging faith in humanity. I will be seeing my endo in a couple of weeks for my semi-annual appt. She has been tacitly supportive continuing to write my rx for pods and dex but doesn’t have a clue how it all works.

Clare

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When I got my newest pump, I set it up and put all my settings and used it for a week before I got into my endo.
They staff was aghast that I was using it before I was officially trained.
So they went through the settings and didn’t recommend any changes.
Well of course , I’ve been pumping for 20 years. There is no magic to it. You just need to find each setting like on the old system.
I think this issue while completely expected, is still irritating.
I mean my doctor does not know my schedule and my eating.
I tweek my system all the time. Our doctors have only a rudimentary idea of what’s going on with any individual patient.

On my very first pump, I had to go off long acting insulin for 24 hours and then spend nearly an entire day at the hospital. In a board room not in a bed. And all the new pumpers learned how to do everything and we ate lunch together and we checked our sugars.
Only after that full day, did they let us leave with our pumps.
One nurse yelled at me because I was DANGEROUSLY LOW!
Yup I was at 81 mg/dl and I was thinking hat was perfect for pre meal.
They freaked out at that, I mean that was 1998. I don’t know how it’s handled now for first time pumpers.