Doctors under the pump to support DIY diabetes management

By Mardi Chapman

20 Oct 2017

Endocrinologists should be prepared to engage with people who have taken diabetes self-management further than most by creating their own closed loop insulin delivery systems.

Speaking at the Australasian Diabetes Advancements and Technologies Summit (ADATS) Summit in Sydney, Ms Cheryl Steele said health professionals were increasingly likely to see patients using home-made, closed loop systems.

 Ms Steele, manager of the diabetes education service at Western Health in Victoria, has lived with type 1 diabetes for over 30 years and has recently hacked her own closed loop system.

She told the limbic the DIY diabetes movement, which uses the tag ‘We are not waiting’, started in the US mostly by parents of children with type 1 diabetes who were frustrated with the lack of progress in technology.

“I’m all for people taking charge of their own condition and if using this technology helps them better manage their condition, then I would consider my role is to support them in that.”

“They are getting tighter control of their children’s glucose levels with the ultimate aim of less risk of developing complications from their diabetes.”

Ms Steele said clinicians could assist by ensuring patients had back-up plans should pumps or the system fail.

“If their patient presents and says they have set up this system, clinicians should engage with them, ask questions and be actively involved in how it’s going.”

“If patients find their health professional won’t support them, they will find another health professional.”

She said people did not have to be particularly tech savvy to create their own system as instructions were readily available along with peer support via Facebook groups.

“Most people that I’ve dealt with in the group are people who do like to self- manage so they have a very internal locus of control. These are the people who are excellent examples of self management.”

She said one of the barriers to DIY diabetes management for adults was the high cost of self-funding their own CGM.

The system requires the use of older style insulin pumps whose software can be hacked to respond to information from a CGM device linked via a mobile phone application.

Ms Steele admitted some endocrinologists would be shocked to know their patients were resorting to DIY.

“In our group, there are around 50 people already doing it and interest is growing as the word spreads. You do feel you’re in control and doing something to help yourself have a better quality of life.”

“Most people with diabetes spend a very small proportion of their time interacting with health professionals, so the more informed you can be, the more likely you are to have positive outcomes.”

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