Disruption in #Healthcare vs my real experience as Type-1 #Diabetic Patient
To me a real #DigitalHealth experience should be definitely totally different! This is not a “connected” patient world at all.
Would love to receive some feedback from #diabetes experts and colleagues.
My background story
I am on #sugar (TD1) diabetes type-1 for more than 18 year's now. After a short onboarding period #ICT (Intensified Insulin Therapy) I decided very quickly to move forward from insulin pens to an insulin pump. And with the disruptive technology of Abbott Diabetes Care the #FreeStyle #Libre (FSL2) the era of real insights in my blood glucose pattern began very hopefully. Best of all it even works under water during scuba diving which I am totally addicted to.
However after many years with my Libre 1st with the Scanner, next with iOS APP I am really disappointed. The APP is okay but old fashioned. There is no possibility to get real-time always on glucose data on my Apple watch and a work around with an extra device on top of the Libre is possible but from a technical perspective it adds another APP and another cloud provider. Very annoying to me is from a #sustainability view that this on top device produces additional battery waste. The Libre is one battery each 2 week and the BluCon also. So I produce battery waste from Libre plus from in my case the Ambrosia BlueCon (on top) device in sum 52 button batteries per year!
Then I found in a facebook group a note about diasend by Glooko and their ability to connect all of my currently in use insulin devices: my insulin pump, my Apple Health data and the FreeStyle Libre data. This was for me for some month a great solution. Guess what happened then — Abbott decided to cancel the open API collaboration with diasend. Thank you so much Abbott. You destroyed it!
I even picked up the phone and called Abbott support center why they decided to go this path and make a lot of patient really unhappy. The Abbott support center agent was friendly however had no answer. Statement: “This should be answered by product management. Okay I would love to talk with them, please connect me. Oh sorry thats not possible.” → Great customer and patient experience.
My hope — well a real-time data experience and a connected world with all my devices. And no I do not want to change a device because I am happy with my insulin pump from Ypsomed and the FreeStyle Libre Glucose Sensor.
I know with an Android mind it could be easier but I am an Apple fan.
And yes I know with a CGM system from DEXCOM it would be possible to get the data on my Apple watch. I still prefer FreeStyle Libre. Why? The injection of the sensor so much easier.
And yes I was for more than 10 years with a Medtronic pump, latest on MiniMed™ 640G insulin pump plus rtCGM on Enlite sensor. This system was okay but not feasible for me because the Enlite serter hurt me a lot and I could not use it alone without a 2nd person help me removing the serter needle housing from the back of my upper arm. The pump standalone also had some issues I hand to contact support several times for a replacement pump due to a broken pump housing. This seems to be a known issue with this pump model and also on the next generation they did not change the housing. The plastic is under heavily pressure when you use the pump with the clip holder. I had 4 times a big crack near the battery side of the housing. Replacement service experience with Medtronic was always excellent however to setup a new pump always consumes some hours life time and it really annoyed me. Recommendation was to wear it differently with silicon covers and so forth. I did not like to change my wearing behaviour at all, to me the pure pump plus clip was simply perfect.
I want to decide which device wearing option and device mix (pump + sensor + app) fits best to me. It is extremely disappointing that all great companies out there can not work together for us patients suffering from a real annoying chronicle disease. We have to “hack” the pumps and apps if we want to connect them and get a real “Connected Patient” experience.