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Position Statement: People with type 1 diabetes and Do It Yourself (DIY) technology solutions

Diabetes Australia believes that people with diabetes should have choice and access to diabetes management solutions that help them manage their diabetes to the best of their ability.

 

Diabetes Australia understands that there are technologies being used by people with diabetes that are not approved for use by regulatory bodies, such as the Therapeutic Goods Association (TGA).

 

These technologies are not commercially available and are 'built' by individuals with diabetes for their own use.

 

This position statement is written for people living with diabetes (and families of people living with diabetes) to provide background information on Do It Yourself (DIY) technologies, the potential risks and benefits of using these technologies, and what people should expect from healthcare professionals in supporting their use.

 

This position statement provides general information. Diabetes Australia is not endorsing or recommending any of the DIY technologies discussed in this position statement.

 

Wearenotwaiting

 

KEY POINTS

1. There are a growing number of people with diabetes using DIY diabetes technology systems to help manage their type 1 diabetes.

 

2. Diabetes Australia does not endorse these technologies for people with diabetes; they are not approved technologies and are highly experimental. Any person using a  DIY technology solution does so at  their own risk.

 

3. However if a person with type 1  diabetes (or a parent or family member) chooses to build a DIY system, they must continue to receive support and care from their diabetes healthcare professional and the health system.

 

4. The emergence of DIY diabetes technologies poses concerns for healthcare professionals, including medico-legal risks and issues with registration and practice.

 

ISSUES WITH DIY TECHNOLOGIES

Any person choosing to use DIY systems does so at their own risk. The systems are considered experimental.

 

No DIY system has been through any regulatory process and all development (past and ongoing) is conducted by people in the diabetes community.

 

Australia has robust regulatory process for therapeutic devices through the Therapeutic Goods Administration (TGA) which considers all aspects of products including safety and efficacy as part of its approval process.

 

As DIY systems have not been assessed by this robust regulatory process, there may be concerns about the safety and reliability of systems.

 

However, it is also important to recognise that these systems have been built by people with diabetes for their personal use (or that of their children).

 

Safety is a major consideration for people building these systems. It is important to note that there have been no randomised controlled trials of DIY systems demonstrating the efficacy of the devices.

 

The emergence of DIY systems poses issues for healthcare professionals working with people with type 1 diabetes who are using the technology.

 

This includes concerns that health professionals may face medico-legal risks and issues with registration and practice. As the systems do not have regulatory approval, health professionals cannot recommend the use of DIY systems.

 

The Australian Diabetes Society and the Australian Diabetes Educators Association are currently developing advice for health professionals regarding this issue and Diabetes Australia supports the need for this advice.

 

It is important that we help health professionals work out how to best support people with diabetes, while continuing to operate legally and within professional guidelines. DIY systems are not for everyone.

 

Building and running a DIY system requires a considerable level of health literacy.

While the instructions are 'open source' and available for everyone, individuals must still understand the devices and the algorithm and how it works. DIY systems are not available for purchase - it is up to the individual user to source all of the components required to build a system. They also have to troubleshoot any problems.

 

DIABETES AUSTRALIA'S POSITION

Diabetes Australia believes that people with diabetes should be able to choose the best management solutions for their diabetes.

 

Diabetes Australia does not endorse DIY systems for people with diabetes, however the inability of currently approved diabetes management devices to 'talk to' each other is prompting people to use DIY solutions as part of their diabetes management.

 

With the availability of open source software and instructions for how to build a DIY solution on the internet, people with type 1 diabetes cannot be stopped from accessing this information, and we need to ensure people are informed of the full range of management options for type 1 diabetes, as well as their benefits and risks. 

 

We recognise that health professionals cannot recommend DIY technologies to people with diabetes. Health professional recommendations should be for devices that have been approved through the regulatory process for safety and effectiveness.

 

However, there will always be some people who accept a level of risk and choose to take the DIY approach. These people should continue to receive support and care from their diabetes healthcare professional and the health system.

 

It is important that we understand the medico-legal and professional issues so that health professionals can continue to support people with diabetes, whatever their diabetes management decision.

 

Diabetes Australia supports the development of an industry digital standard that would enable devices from different companies to be integrated and 'talk' to each other.

Full statement

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