Open source decision tools
There are a number of approaches that have been instigated by parents of children with type 1 and people with type 1 to be able to better access and share data, particularly the blood glucose level data that can be obtained from continuous and flash glucose monitors.
What are open source decision support tools for diabetes?
While approaches differ, the goal is to be able to more easily access the data that is stored and transmitted from a monitor and to be able to share it with family, carers and healthcare professionals.
‘Open source’ means software for which the original source code is made freely available and may be redistributed and modified. Essentially, this means that people have developed the kit and computer programmes that make these systems work for their own use, and have then made the designs or programmes freely available for others to use and adapt.
Nightscout is a popular open source, DIY project that allows real time access to a CGM data via personal website, smartwatch viewers, or apps and widgets available for smartphones.
Another system under development is Tidepool, which we are supporting with a small exploratory pilot study in the USA.
What are the potential benefits?
Open source decision support tools have proved popular with some parents of children with type 1 diabetes as they enable them to access continuous blood glucose measurement data remotely through a variety of methods and then support the child, or their carer, to check blood glucose and make adjustments to insulin accordingly. This can provide peace of mind for all involved, and may help improve blood glucose control because the child can benefit from the parent’s knowledge, even when they are not with them.
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 currently, many of the open source systems available are unregulated. This means that they have not gone through the stringent testing and assessment that all drugs and medical devices must go through before they are deemed safe and effective and approved for use by people with type 1 diabetes.
Any use of unregulated open source decision tools are at the risk of the user and we can neither recommend nor give advice on their use.
Tidepool is a registered company which complies with the US FDA regulatory requirements for medical device software, in contrast to other open source approaches which are community led across multiple regulatory jurisdictions. In addition, the Tidepool software does not make any recommendation for treatment, such as insulin dosing.
What is our interest?
We are interested in the emerging and rapidly changing landscape of decision support tools to aid people affected by type 1 in managing glucose levels. This approach to personalised medicine for people with type 1 shows potential and we are exploring where we can add value to this field of research.