Type 1 diabetes is a relentless 24-7 condition to manage. With access to better technology and high volumes of data many people with diabetes are becoming data rich. However, access to device data and analyses are restricted by the diabetes device providers and the wider healthcare industry.
You can take this job"
These diabetes devices (including insulin pumps, and continuous glucose monitors (CGM)) have data about my body and medication, but industry and providers have made a decision not to give me access to this data. I have a complicated condition to manage that would benefit from the additional data now, and today, the wider type 1 diabetes community has decided #WeAreNotWaiting to access and use this data to better manage our blood glucose. Here, I describe what prompted the type 1 diabetes community movement, and our progress to date.
Existing technology is unrealistic
Access to technology has improved significantly in the 22+ years I have lived with type 1 diabetes. My UK National Health Service (NHS) funded insulin pump allows me to fine-tune background basal and mealtime bolus insulin. My self-funded CGM provides real-time feedback of my blood glucose. A common comment I receive from others outside the diabetes community is the belief that with such technology, my diabetes is ‘cured’, and unfortunately this is not the case. The reality is that the management of my condition with such tools is significantly more complicated.
The recent advances in diabetes device technology provide many functions and high volumes of data and it is very welcome and useful but such systems always fail in the same area; the expectation of the person living with diabetes to understand, process and correctly act upon all of this information.
As a result, people living with diabetes and their families have become frustrated by feeling judged by healthcare professionals, and overwhelmed by vast amounts of data and diagnostic information and alert and alarm ‘shouts’ from their diabetes devices often indicating they have failed at being a ‘good diabetic’, i.e., poor blood glucose numbers. There is also a sense of disappointment summed up as: ‘my body has let me down.’
Will things get better?
People living with type 1 diabetes in developed nations are getting better at understanding the disease, causes of fluctuations and how to react, and better at technically fine-tuning treatments with more real-time information, but none of this progress helps a person process and act upon such basic information.
In fact, we may be guilty of using this very basic data feedback badly. The essential data people living with diabetes need most is locked into the device manufacturer’s products, with limited or no ability to share across devices. There is also a lack of actionable information which would give people the opportunity to analyse and review data for possible and more importantly, correct adjustments to medication (insulin). However, these analytics are far too complicated and beyond the means for most of us.
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