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The Patient Who Wouldn't Wait

Dec 18, 2014

There’s a new movement gaining substantial momentum in the diabetes world. Maybe your patients have shared their firsthand stories of how it’s impacted them. Maybe you’ve read an article about it or have seen a presentation. Maybe you’ve heard the social media cry: We Are Not Waiting.

The epicenter of the movement is the patient community. People living with diabetes are tired of waiting for ways to access their own data and navigate multiple proprietary systems that are supposed to manage a singular disease. Patients are frustrated with lengthy approvals for basic technological advances while the rest of the technology world zooms light years ahead. For that matter, many healthcare practitioners are too. With more patients using diabetes technology and subsequently encountering its frustrations, a new generation of diabetes online community has formed- more vocal and more active than ever before. 

Among the manifestations of this growing patient led movement, NightScout is a clear d-tech frontrunner. So what is NightScout? It’s a web tool developed by the patient community that allows users to view DexCom CGM data wirelessly. This essentially means that Amy can see Bobby’s real-time glucose values from across the shopping mall, on the other side of town, or even across the country. NightScout can be used in pediatric and adult patients alike.

Here’s what it takes: the DexCom G4 Platinum CGM system, a smart phone[i] (see footnote), OTG technology (on the go technology – think usb connector), and wireless access. There is even an option to program a smart watch to display CGM data for maximum “glanceability”. While it may sound complicated, many people find it is easy to follow the instructions. Those who are interested but struggle with the setup can easily access the network of nearly ten thousand other NightScouters for troubleshooting tips.

The NightScout website is another reminder of the project’s roots in the patient community as opposed to device makers. According to www.nightscout.info:

“There is no support or any warranty of any kind….This is a project that was created and is supported completely by volunteers. Data may go missing without warning, data may be absent, data may be wrong, data may be delayed, you may void your warranty, [and/or] you may break something.”

That said, the number of patients using NightScout to supplement self-management continues to grow exponentially. NightScout boasts some very enthusiastic users, and here are what a few of them had to say to a recent poll on Facebook:

• “Prior to set-up (four months ago), little guy's A1c was stuck in 9’s & high 8’s. This visit, 7! More importantly, we had highest percentage in range ever and lowest percentage of lows!”
• “For me, this is truly a game changer! I plan on using this wonderful technology for before and after school activities, sports practices and games, date nights, and when my son is at a friend's house... times that typically have been more challenging for us. “
• “The impact that NightScout has had on our lifestyle is tremendous. More importantly, NightScout can improve control. I now have less fear that my child will have a catastrophic low while with caregivers. Now while I'm away, I find myself keeping his blood sugar a bit lower, but within the normal range. We are looking forward to see if there is a change in our son's A1c thanks to NightScout!”

With such anecdotal evidence in mind, researchers are beginning to look into the “glanceability effect” on clinical and quality of life outcomes.

NightScout has drawn some comparisons with the newly FDA approved DexCom SHARE; however, there are key differences in set up, cost, mobility, device compatibility, and access to glucose data. While the makers of NightScout are in talks with the FDA, it remains an unapproved, yet extremely popular tool for people living with diabetes.

What is your take on the patient community’s attempt to tackle data accessibility? How can educators navigate this uncharted tech terrain?

This has been a joint guest blog by Rachel Head, RD, CDE, and Molly McElwee-Malloy, RN, CDE, CPT.
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[i] http://www.NightScout.info/wiki/welcome
Cloud: a repository or database that is located on the internet, making the data available to those with the correct security rights and address (URL) of the database.  For this project, each installation of the software has its own database on the cloud.  This is how you view the data for the T1 that is being tracked.  The data is not shared with others unless you give them access; the website is not password protected and is not secure.
Dexcom G4 Platinum receiver:  the Dexcom continuous glucose monitor (CGM) utilizes a sensor that is inserted subcutaneously into a person.  The sensor reads the glucose level of the interstitial fluid (it does not read blood glucose levels).  The sensor sends the reading to the Receiver approximately every 5 minutes.  The Receiver stores those readings in its memory so they can be accessed by various computer programs including the Dexcom Studio and the NightScout software.
OTG:  On-the-Go technology. USB OTG technology allows individual components to be connected to each other without the need for each device to be connected to a computer.  The OTG cable acts as the translator between the devices.  At least one of the devices connected must be OTG compatible.
Smartphone: a phone that can be connected to the internet and can run applications (apps) that perform various functions.  For the NightScout software the smartphone is attached to the Dexcom receiver to transmit data to the cloud.  Transmitting data is the phone’s only purpose.  As of this date (July 18, 2014) only phones/devices that use the Android operating system are able to transmit Dexcom data to the cloud.  Development is in progress to be able to send data via iOS.  Any smartphone or device (iPhone, tablet, iPad, kindle, PC, iMac, etc.) that can access the internet to see webpages can access and view the CGM data of the person you are following.

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