A Comment on “‘Do It Yourself ’ (DIY)-Automated Insulin Delivery (AID) Systems: Current Status from a German Point of View”: Time for Legitimate Co-Creation

Guiding principles of my work in type 1 diabetes are that (a) every person is entitled to life-saving insulin and (b) the person should decide how to administer that insulin. I am certain these principles are informed by my own type 1 diabetes and my work as a psychologist where I advocate for people with diabetes and their families. I am also fairly certain no diabetes care clinician would disagree with principle 1. However, the commentary by Heinemann and Lange¹ made me wonder whether the authors would agree with principle 2. I perked up when reading this statement in the summary, “. . .other solutions will be needed to prevent a growing group of patients in Germany (and their treating physicians) from using do-it-yourself (DIY) AID systems and thus from getting into a difficult legal situation.” They seem to argue against use of DIY systems at present and that my principle 2 is problematic. I challenge this statement for a couple of reasons.

First, the lens of the commentary is very much a traditional approach to diabetes care. That is, the options for administering insulin are restricted to what has been researched, approved, and recommended by device manufacturers, regulators, and care clinicians. It assumes that the potential risks far outweigh the potential benefits and that careful testing take place before the field moves forward. A very gradual ‘disruption’ versus what the DIY movement has done, which is a more forceful and accelerated disruption. As I see it, the very nature of the DIY movement is intended to fight this traditional, establishment point of view.

Second, this top–down thinking often ignores the perspective of the person most affected by these decisions until the “top” has made their decisions. In fact, only one line in the commentary is directed at the psychosocial impact of DIY systems. The beauty of the DIY movement is that it promotes bottom–up tailoring of diabetes treatment. As the person learns and shares, it forges upward to the larger community to promote change and eventually broader conclusions about its usability and effectiveness can be made. Further, the person decides the outcomes of interest as she notices impact in areas such as less cognitive burden and improved sleep quality. The presence of both—the establishment and the DIY movement—achieves different means and outcomes, and both are equally important in modern-day diabetes management.

To me, this argues for legitimate co-creation of a diabetes treatment plan. If a person or family wants to use a DIY system, the team should support this. There are still opportunities to review data and trends, even more so with a DIY system, and to suggest modifications to insulin dosing. That is what any clinical encounter boils down to anyway, a recommendation that someone may or may not follow once they leave clinic. Please start with an acknowledgment that insulin administration method should be up to the person and work to co-create the best glycemic and psychosocial experience for the person most affected by type 1 diabetes.