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Open source and DIY systems

Open source and DIY systems are sometimes used by people with type 1 diabetes or people caring for someone with type 1 to help manage the condition. Though there may be benefits, open source and DIY systems are unregulated and can pose a risk to life. The information below is for reference only – we do not recommend or offer advice on how to use them.
Content last reviewed and updated: 15.08.2023

A woman using open source DIY methods to manage her type 1 diabetes

What are open source decision support tools for diabetes?

For type 1 diabetes, the general goal of open source decision support tools is to be able to share data from a continuous glucose monitor (CGM) or flash glucose monitor more easily with family, carers and healthcare professionals. They can also send glucose results from a CGM or flash sensor to an insulin pump to automatically adjust insulin dosage, working as a DIY closed loop system.

‘Open source’ means software that is freely available and may be redistributed and modified. It means that people have developed the equipment and computer programmes to work for their glucose monitoring or insulin delivery. They have then made the designs or programmes freely available for others to use and adapt.

One example of this is Nightscout, which is an open source, DIY software that allows real time access to CGM data on a desktop computer, tablet, smartwatch or smartphone.

What are the potential benefits of open source and DIY systems?

Open source tools enable people to access continuous blood glucose measurement data remotely. So if you’re looking after someone with type 1, you can support to check blood glucose without having to be with them. This can provide peace of mind for everyone and help with type 1 management even when people are not together.

Some athletes with type 1 have also found it useful as they are able to easily check their blood glucose level on a smart watch while exercising, rather than stopping to do a finger prick test or get out a CGM.

What are the potential risks?

It is important to remember that most open source systems available are unregulated. This means that they have not had the rigorous testing and assessment that all medical devices must go through before they are deemed safe and effective for people with type 1 to use.

If you use unregulated open source decision tools it is entirely at your own risk. We neither recommend nor give advice on their use.

What regulated apps are available to help manage type 1?

There are a number of apps that can help you manage type 1, which have gone through the necessary regulatory process. Find out what apps are available.

What are DIY artificial pancreas systems?

hybrid closed loop system (also known as an artificial pancreas) allows a continuous glucose monitor and an insulin pump to ‘talk’ to each other and automate the delivery of insulin in response to changing glucose levels. These are available on the NHS if you meet certain criteria but might not use the particular pump or CGM that you use or would like to use. In this case, some people with type 1 diabetes ‘hack’ their CGM and insulin pump to create their own version of a hybrid closed loop system.

What are the potential benefits?

There have been peer-reviewed presentations and publications that have shown some clinical benefit of DIY artificial pancreas, alongside what those using the systems have reported anecdotally.

Many people with type 1 take DIY approaches because they feel that regulated routes of developing systems are taking too long to reach people with type 1. With DIY tech, they are able to create automated insulin delivery systems themselves and, by creating these systems at home, they can personalise them and tweak them to match their own needs.

What are the risks?

The main risk for DIY artificial pancreas systems is that they are not regulated. This means they have not been through the rigorous tests and clinical trials that all regulated medical devices have to go through to ensure patient safety.

All new treatments – whether drugs or technology – need to be tested on large groups of people to make sure they are safe and effective, because the risk to life from a fault in the technology is high.

Creating DIY devices is complicated, and when dealing with insulin any mistakes or miscalculations could have serious outcomes.

Those who hack their technology can also risk losing any warranty for their devices, preventing them from getting replacements or repairs when required.

Read our full position paper on DIY technology.

What tech and software is available?

There are a number of apps that can help you with your type 1 diabetes management. You can also read our Guide to Type 1 Technology to find out what tech might help you and what is available on the NHS.

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