DATA PRIVACY IN DIGITAL HEALTH - share or not to share

Let's be real. In times of Instagram and social media it has become almost impossible not to share any personal data in exchange for the use of the service. In our times the clear lines of privacy have faded quite significantly and carelessness has prevailed. Fortunately, medical data is still the exception to the rule both for ethical aspects and strict legal restrictions.

Still, the big pharmaceutical companies cannot avoid the app market and I guess many of us are quite happy not to carry blood sugar measuring devices around anymore. To be fair, in the old days, it was even a reason for me not to measure at all when I was not home. As a teenager I found it highly unpractical. My doc these days used to call it "flying blind through the mountain range at Mach 3", and she was right - my sugar levels were a catastrophe.

Nowadays, sensors are commonly used and the improvement in life quality is noticeable from day one. When I started wearing a sensor for the first time I wondered why they handed me an additional separate device to it, given that I could simply download an app and manage everything via my phone. Consequently, the device immediately landed unused in my drawer. Of course, my generation ... everything is on the phone. Disclaimer - agree, GTC - agree, agree, agree agree, don't care, leave me alone, let me use it! And I was happy. I measure 8-10 times a day now - just on the fly. Everything is immediately documented, even with statistics, trend analysis and a neat report I just hand over to my doc. That's brilliant!

But then I realised, we are more - we are young and we are old, we are high-tech and old-fashioned, we are acceptant and doubtful. We see a smart phone as bliss or as something we cannot avoid. So, the "standard package" they offered me made sense, but I still wish I had the option to return the device when not needed, since I have it all on my phone anyways. Sustainability is a thing nowadays ...

And collecting data ... I say it! I have not read what I agreed to when I installed the app. I guess there is a certain expectation in all of us that a renowned pharmaceutical company is compliant to the strict regulations of medical data privacy and, for the sake of their reputation, will not trick us into selling our left kidney. Still, the letters were quite small, filled with abbreviations and links to further medical regulations, which even the author probably doesn't fully understand. I once had a conversation with a smart and stubborn business man who has done and seen everything in this world, and he told me something that I found quite stereotypical at that time, "Nothing in this world is for free. Every benefit comes at costs. Only we often do not realize what the payment looks like ..."

It is my opinion though that my sugar level recordings are safe (though not encrypted, I guess). I expect that the price of my sensors also covers the app development that comes with it, so there is no reason to assume that my medical data is used for further improvement studies. Though I am asked once in a while to participate in clinical studies, which to me is just another proof that there is a reasonable data policy in place. Also when it comes to usability analytics I believe it is respected when I untick my consent to anonymous data sharing.

However, the fact that I can share my data with my wife and my doctor just by flipping one switch in the app also tells me that I am sending something out there into the ether, which indeed is a strange feeling. I guess enabling my wife and my doc to support me on my dx journey simply outweighs my concerns about data privacy. But that's another story ...

What do you think about the use of apps for blood sugar monitoring and medical data privacy? Let me know in the comments.