JDRF UK has published a position statement on do-it-yourself (DIY) technologies, which are on the rise among people with type 1 diabetes.
The type 1 diabetes charity says it acknowledges the rights of the diabetes community to use such tech systems, but it does not endorse these DIY models.
In its DIY Technology Position Statement, JDRF UK said: “JDRF UK cannot endorse the use of DIY tech systems as these products are not regulated and the use of them may carry risks.
“The organisation, however, respects the rights of people with type 1 diabetes to choose treatments that best fit their needs and how they manage the condition, including the use of DIY technology.”
Tech-savvy people with type 1 diabetes have for years been creating devices such as homemade artificial pancreases. This has been made possible by using commercially available insulin pumps and continuous glucose monitors and then using homemade electronics to integrate the two.
The use of DIY methods has allowed some people to use the self-made technology to enhance their diabetes control. The charity now believes more than 100 people with the condition living in the UK are developing and using DIY medical technologies, with this number predicted to be rising sharply.
The JDRF statement recognised evidence behind DIY technology, stating: “There have been peer-reviewed presentations and publications on the results of DIY systems that have shown clinical benefit.”
It also acknowledged reports which have revealed how DIY systems have led to improved HbA1c levels and reduced hypoglycemic episodes. The charity said: “JDRF is aware that some people find they are getting such good results that they are not concerned about the lack of support, while others feel frustrated that they are unable to get their healthcare team’s help.”
The JDRF makes a call for more funding for healthcare professionals to be trained in technology and digital developments in type 1 diabetes.
The statement highlighted that healthcare professionals do not have medical indemnity to support people using devices designed to perform functions outside of their original regulated purpose.
But the statement also said: “JDRF acknowledges the important role healthcare professionals play in the management of a person’s type 1 diabetes – however that person decides to manage their condition, whether via prescribed technology or a DIY solution.”
In 2017, JDRF announced its commitment to aid open-protocol artificial pancreas systems through the awarding of grants to support certain projects.
Editor’s note: People who have adopted their insulin pump or CGM to function as an artificial pancreas have a strong understanding of diabetes and engineering. It is not advised to make changes to your insulin pump or CGM, and doing this could invalidate product warranties.
