It has been some time since the dawn of DIY apps for automated insulin delivery management in the diabetes community. I shared my personal journey as a Looping mom during the ISPAD 2022 conference, which you can revisit here: Link to ISPAD 2022 Post.

Additionally, I delved into the exceptional OPEN project closing conference while summarizing the Open project that took place prior to ATTD2023 in Berlin. I was privileged to attend both conferences, thanks to the #dedoc initiative – the #dedoc voice scholarship program generously supported by partners in the field.

Within our vibrant Looping community, we have witnessed various phenomena. From individuals offering their “assistance” for a fee, to organizations or centers providing paid services for building and operating DIY apps, to healthcare professionals seeking our guidance and consultations about the system we use daily for diabetes management (in my case, my daughter’s).

I’ve come across the stories of anxious parents desperately seeking help and support in the realm of DIY looping from healthcare professionals. Some have faced threats of expulsion from medical centers or been labeled as social affairs cases. Parents who have spent sleepless nights for years, sitting with their children in school all day due to “best advice” from the school, while their kids dream of indulging in a simple ice cream. All of this amidst the frustration and strict, unyielding routines that make it nearly impossible to maintain healthy blood sugar levels. I can’t help but wonder: WHY and HOW is this still happening?

If you’re a healthcare professional who disagrees with your patient’s preferred therapy, guide them, provide a comprehensive range of information and tools for managing the disease in the best possible way. However, if, in the end, your patient chooses a DIY approach, do not perceive it as a threat. Instead, be a guide, refer them to colleagues who support looping, expand your knowledge, and keep an open mind. You already know that there’s no one-size-fits-all solution for all patients, and Looping might not be suitable for everyone. But if you have a DIY Looping patient, then… CONGRATULATIONS! You have a highly motivated patient who genuinely cares and is eager to learn the best way to live with their disease for the rest of their life. They are determined to understand carb absorption, insulin activity within their own body, and responses to various situations, whether they’re cycling, playing sports, growing or facing any other scenario. Please, be their guide, not their gatekeeper (as P. Khar suggests). If you cannot offer a satisfying alternative to your patient, assist them in connecting with your colleagues who can. Remind them that being part of an open-source automated delivery management system requires personal involvement and regular community engagement (at least once a week, through platforms like Loop and Learn, Looped, AAPS, iAPS, Local DIY groups). Encourage them to embrace independence from paid individuals, and take pride in the opportunity to watch your patients grow.

They’ll not only benefit from your guidance, but they’ll also lift you up along the way. Together, we can help more individuals take control of their diabetes management and improve their quality of life.

Your position as a healthcare professional might not be easy, especially when assisting with a system you don’t fully understand. In such cases, the key is to listen and trust your patient. Guide them in reaching out to experienced users who actively use and understand the system. If you find yourself fascinated by the technology, invest time in learning about it. However, always keep in mind that the #WeAreNotWaiting movement is the most dynamic phenomena in the world of diabetes therapy. It evolves rapidly, and even active users sometimes struggle to keep pace with the latest updates.

If your patient is an experienced Looper, there are variations of branches, patches, and personal modifications that you might need to consider. During a regular visit, it might be impossible to grasp and explain everything. What we all need is more understanding and collaboration, particularly when dealing with a serious chronic disease.

I’d like to conclude with the words of Tadej Battelino, which I heard on Sunday, 16th of October 2022, at ADNEC Joint Symposium ATTD-ISPAD when he said:
“I have a short story for you to conclude this session. When I was young, some time ago, I had a small motorbike. It only had three shifts and didn’t go faster than 50km/h. But I learned that by upgrading it with an extra shift and a few minor changes, it could reach 70km/h. So, that’s what I did. It was illegal. It was not approved or tested right, but my little motorbike did go 70km/h. It’s only natural that people try to innovate and improve, particularly when dealing with a serious chronic disease. I suggest collaboration and cooperation between all parties interested in improving this condition. With joint forces, I am sure we can make progress faster.”

Just… please… don’t let us witness one more heartbreaking story of desperate and scared patients or caregivers whose only wish is to live their best lives, with diabetes.

Transparency & Disclosure Statement

I’m the administrator of Looped Italia Facebook group, Loop and Learn Facebook group Moderator, @loopandlearn Instagram content creator and a part of #dedoc voices program, an initiative of #dedoc.  But everything I share is in my own words.