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Type 1

CGM in the Cloud: The How, Why, and Why Not of Remote CGM Watching

By Kerri Sparling

Twitter summary: Kerri Sparling talks about the pros and cons of CGM in the Cloud – a novel way to monitor CGM data that has some excited and others keeping away

Short Summary: Kerri Sparling (Sixuntilme.com) discusses CGM in the Cloud, explaining what it is and how it works. Sparling writes about its benefits and drawbacks that are leading to a split in the diabetes community – some people are celebrating its attributes while others are keeping their distance.  

What is CGM in the Cloud?

The CGM in the Cloud group on Facebook was founded in April 2014, and currently has 6,204 members (talk about fast growth - there were fewer than 1,950 members in July 2014). Members join by the dozens every week, each seeking more information on how to send CGM data “into the cloud."

Wait, wait, wait … what’s “the cloud?” The cloud is the term for storing the data on a web-based server, instead of on specific devices. Sending CGM data into the cloud takes that data from the receiver and makes it possible for it to be distributed to multiple devices (e.g., smartphones, smart watches, tablets). Currently, Dexcom has its cloud-based Share application under FDA review, but does not have approval yet, and Medtronic does not have a cloud-based system as of yet.  Dexcom also has plans to submit its Gen 5 system to the FDA by early next year; this would send CGM data straight from the transmitter to a smartphone app.

A new system called “Nightscout” uses CGM in the Cloud to take the data from the Dexcom G4 Platinum receiver and send it to an Android device by way of a custom-built application, which stores the data and sends it to an open-source device, like a Pebble watch, a computer screen, or perhaps even the coming-soon Apple Watch. The system requires an Android phone with data capability (either through a data plan or Wi-Fi access), two micro-USB cables, and a Dexcom G4 receiver.  The system can be cumbersome to hook up – it takes anywhere from 30 minutes to several hours – but some members in the CGM in the Cloud group are willing to provide assistance.  The Nightscout website provides all the information needed to set CGM in the Cloud up. 

So why is sending data to the cloud important? It makes CGM data available not just to the person holding the CGM receiver, but to anyone linked up to the cloud. Blood sugars can be sent from a receiver in Rhode Island and viewed by a partner in Los Angeles, or from a receiver in middle school to a parent’s computer 20 miles away. The ability to remote monitor offers another safety net for those who want it. 

Not only that, but CGM in the Cloud is an inspiring example of grassroots action and patient advocacy. Nightscout is the brainchild of people touched by diabetes who took matters into their own hands to improve management through better use of technology, and bypassing the sometimes slow bureaucracies present in government and industry that can delay innovation. Nightscout isn’t about money or profit - it’s about helping people with diabetes, and while the system has its drawbacks, the group’s mission is definitely worth applauding.

Who Is Using It?

Initially, the system was created by parents of young children with diabetes, in efforts to keep track of CGM data by sending it to the cloud and then to devices like the Pebble watch, or a website-based platform. 

“I am using [the Nightscout system] and started the [Facebook] group because I am not waiting for an approved solution - in 2016 at the minimum -  but using Nightscout to create a safer, less burdensome life for my eight year old daughter,” said Jason Adams, who co-founded the CGM in the Cloud group. The other co-founder, John Costik, agreed. “For us and many like us, it enables freedoms that type 1 [diabetes] so desperately tries to take. From sleeping safely at home and on sleepovers to simplifying the task of self-monitoring at critical times, remote monitoring can bring these moments back to the realm of ‘normal.’ It brings a deeper understanding of type 1, an understanding that weakens its hold on our lives.”

Jacque Mullins, the parent of a type 1 child, cites the practical advantages. “I am using CGM in the Cloud to keep my child safe and to allow him to be a kid,” he said.  “For the first time, he has been able to go to a birthday party alone, with me popping in just to dose for food.  I can keep an eye on him from wherever I am, and he can just be a kid.” 

Adults with diabetes are also using the system. Sara Nicastro sends her CGM data to the cloud in order to make her data more accessible and to make viewing it more discrete, using the Pebble watch on her arm as her go-to viewing screen. “I was really skeptical,” said Sara. “I wasn't sure if there was enough value in the system for me to make the investment of time and money, not to mention carrying around and troubleshooting the extra items. It seems like such a small difference to have my CGM data on my wrist as opposed to on a receiver in my purse, but that small change makes a huge difference in allowing diabetes to fit into my life instead of the other way around.”

Melissa Baland Lee, who’s had type 1 for over 20 years, sends her CGM data to the cloud as well. “My husband has woken me too many times for an overnight low. To have his phone alert him when I’m home alone with a 49-double-down [arrows on the Dexcom CGM that indicate a rapidly dropping blood sugar] that won’t budge gives us just a little peace of mind.” For adults with type 1, sending their CGM data to the cloud allows for parents, friends, and loved ones to remotely monitor their blood sugars. Melissa does acknowledge the hiccups in the hardware, though. “While the rig is a fragile beast, it’s a means to an eventually more elegant end – the end being that all of the hard work these folks spend coding this project will ultimately open up our data for us to own/review/manipulate in ways that make sense to us.”

Who Is NOT Using It?

Of course, the first limiting factor for this category is that over 90% of people with type 1 diabetes aren’t using CGM, according to data from the T1D Exchange. For the ~10% that are, several hurdles have prevented some from using CGM in the Cloud. The set up process may be daunting for those who are not technologically savvy. For others, their CGM of choice may not be supported by Nightscout (currently, the system only works with the Dexcom G4 Platinum receiver). And there is also the concern about the cost of parts for the system (an Android phone with a data plan is required), and the potential for damaging the fragile USB port on a Dexcom receiver. 

“We just got our first Dexcom, and I’ve heard the rig is hard on the charge port.  I’m afraid of ruining [the USB port of] the receiver,” said Sherry Roberts, a parent of a child with diabetes. 

Cathie Wallace, who has type 1 diabetes, shared concerns about cost. “I would love to use it but can’t afford it.” The cost of sending CGM data to the cloud varies depending on many variables – is the CGM system itself covered by insurance? Does the household have an Android phone available, or does one have to be purchased? Does a data plan need to be purchased? And what about the cables and cords needed to set up the system? Costs for clouding CGM data vary widely, and can make or break someone’s decision to move forward. According to Nightscout’s website, the minimum cost for the initial set-up is about $100, though it points out that it can cost much more than that in some cases.

Then there’s the issue of restricting access. Adults who use the system can give access, or revoke it, to whomever. For kids who have parents accessing the system, it can be a little more complicated, as CGM in the Cloud can lead to some parents micro-managing their child’s life or being overly worried about every tiny fluctuation in their child’s blood glucose. 

Tina Ghosn, who has three kids with type 1, is not using the system. “Could you imagine how quickly the remaining shreds of my sanity would unravel if I were to be watching the numbers of three kids 24/7?” 

For Kimberly Robertshaw, she and her daughter (who has type 1) have mixed feelings about remote monitoring. “It’s great for seeing trends, or for sleepovers, or if you are traveling.  But it can make helicopter parents worse, and it’s more to carry for a child.  I firmly believe in letting [her daughter] be a kid and not make her whole life diabetes, so I worry this is a tad invasive.  But we’re giving it a shot.” 

Opening up CGM data offers patients and their loved ones access to a broader safety net of care. But too much information, in some circumstances, can also be damaging depending on the person’s relationship with diabetes. 

Scott Johnson, diagnosed with type 1 diabetes in 1980, has been using CGM in the Cloud for his personal use for several months – “I love being able to just glance at my wrist and see where I am and whether I’m moving, and if so, in what direction.” But there’s another side to his data upload that was only brought to light after sharing the streaming URL of his data with his father.

“My dad looked at it for a while, then said, ‘I’m not ready to ride that rollercoaster with you.’ All of this data was overwhelming to him…because his involvement in my diabetes is not anywhere near as active as it was when I was growing up.  Now, information is a click away. Yet he doesn't know what he would do if he checked it and saw that I was ‘in trouble’." And what is "in trouble?" Way high? Way low is obvious, right? But then what? Call my wife? Wake the house up?...And imagine if the last thing on the screen was a sharp downward line?”

I was diagnosed in 1986 and only started using a CGM once I was living on my own, not under the care of my parents. My mother is both fascinated by the CGM data and fearful of it, because seeing the constant shift in real time can be empowering but also scary. 

It’s about personal preferences. In my life, I’m taking a preemptive bite out of fear by putting another safety net into place. When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it. When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep. Same for when my husband is traveling and I am alone with our daughter. I sometimes worry that my data will cause them undue stress, and I worry that I’m somehow sacrificing my privacy or independence by sharing this data, but in the long run, the feeling of safety is worth it for me. 

“To cloud or not to cloud?” is a personal choice. Having diabetes is not a choice, but the tools we use to manage it can be, and for that, I’m grateful.

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