At the end of 2017, after almost 38 years living with type 1 diabetes, I’d pretty much given up on my childhood dream of having an artificial pancreas. I was shocked, massively relieved and awe-struck to discover that some seriously dedicated people who had diabetes themselves, or loved ones with diabetes, had taken diabetes tech into their own hands and created the solution themselves.
This blog is an attempt to make sense of my 40 years of life with type 1, drawing on:
- 15 years as a psycho-social health researcher
- 2 years in IT usability and user trust research
- an n=1 observation of the psychosocial, biological and sensory impact user-created open source systems OpenAPS, Loop, AndroidAPS, and Nightscout have had on my life
- industry developments
- interactions with developers in the #WeAreNotWaiting community who continue to amaze me with their commitment to pushing things forward
- the lived experiences of others on the same trajectory.
I’m fascinated by:
- the potential of open source and open standards to transform healthcare
- new insights into the diabetes experience gained through DIYAPS and how these allow us re-think, and improve on, diabetes care so that a healthier, more humane future is possible.
Most of all I’m just thrilled for the next generation of people with T1D. I hope they can run headlong into the future and never look back. I strongly believe that closed loop artificial pancreas tech is the biggest development in diabetes since insulin 100 years ago. It needs to be affordable and accessible for all. Right now.
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You might also enjoy this interview with me, Jim Matheson and Tien- Ming Hng, on the ABC Science Show.
I’d love to hear from you.
Mary Anne Patton, Australia