The Do-It-Yourself (DIY) Diabetes World has been back in the news recently and more health care professionals who work in diabetes have been publishing articles sharing their experiences with these systems as well. However, since the DIY systems are diabetes care tools that were created by patients outside of the normal approval process, there is very little official guidance for health care providers (HCPs) about how to support patients who are using them. While some HCPs feel compelled to support people using these systems, some are more hesitant.
Between September and November of 2020, there were four articles different published in the Journal of Diabetes Science and Technology with perspectives from several health care providers on the DIY closed loop systems.1-4 In the article written from the family and provider perspective, the nurse practitioner author discussed how uniquely challenging the management of type 1 diabetes is and suggested that health care providers allow their patients’ autonomy in their management methods to help decrease the burden of diabetes.1
Allowing patients’ autonomy was also a viewpoint shared by the endocrinologist from Australia who published the perspectives of an endocrinologist.2 The author suggested that although it can be helpful to understand these systems, the health care provider should not feel obligated to provide advice on utilizing the system. But he also did not believe that the use of a DIY system should negatively affect the relationship with the HCP.
In the review of emerging evidence article, the authors state that whether providers are helping patients with the DIY systems or not, people with diabetes are using the systems. 4 They then reviewed the current data from 24 studies that showed positive self-reported outcomes including:
- Decreased HbA1c
- Reduction in low blood sugars
- Reduction in variability in blood sugars
- Increased time in range (TIR)
- Lower mental burden
So, if these systems are working to improve people’s time in range, A1c, and mental burden, it would seem like an easy “yes” from a health care provider. But there are very real concerns when it comes to liability, legality, and knowledge related to the DIY systems. More recently, in October 2021, a team from the UK published an article in Diabetic Medicine asking regulatory bodies to provide guidance to help ensure that both the HCPs and patients living with diabetes can continue to safely use these systems.5
In the article presenting the German perspective, the authors discussed their concern over the safety and efficacy of the DIY devices.3 In the summary of this article, they suggested preventing the growth of the DIY patient group in order to avoid legal challenges. This was a less popular point of view that was later questioned by leading diabetes psychologist and long-time Friends for Life faculty member Korey Hood.
While it’s easy to understand the fear of legal action in our highly litigious societies, the priority should be supporting and empowering families and people living with diabetes. This is what many of these articles suggest, and the provider who offered their perspective in the first article reminded readers that diabetes is 99% self-care and the time with the provider is only 1% of their time related to diabetes.
This image, created by Diabetes Online Community member Manny Hernandez, depicts the 99% vs. 1% timing, using the blue circle symbol for diabetes with a small notch removed. The notch represents the time we spend with our diabetes care team. The blue represents the time we care for diabetes on our own. The key for those of us with diabetes is finding a health care provider who is willing to partner with us and help us meet our goals for diabetes self-management in whatever way works best for us.
- Do-It-Yourself (DIY) Systems in Diabetes: A Family and Provider Perspective
- Do-It-Yourself (DIY) Closed Loop Systems: Perspectives of an Endocrinologist
- “Do It Yourself” (DIY)—Automated Insulin Delivery (AID) Systems: Current Status From a German Point of View
- Do-It-Yourself Artificial Pancreas Systems: A Review of the Emerging Evidence and Insights for Healthcare Professionals
- #WeAreNotWaiting DIY artificial pancreas systems and challenges for the law
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES