Nightscout – Remote CGM monitoring

Most of my reviews start off with me trying to work out who a product would be good for. Outdoorsy people? Techies? Those with little children? Nightscout might be the most specialised system I’ve ever looked at. I rarely also start reviews saying that the product is not medically certified and should not be used to influence treatment but this time I will.

So what is Nightscout? It’s an open source system for Type 1 diabetic CGM users and their families that takes the data the CGM gathers and lets you be constantly updated and gives you analytical tools.

Too vague? Image this situation. You’ve a child with Type 1 Diabetes who gets extreme lows in the night. You’ve invested in a CGM which monitors her but it’s not that loud – you can’t hear it well in your bedroom. Nightscout lets you set alarms on your phone which will wake you up.

You’ve a child who is starting to think about her own glucose levels much more and wants to pay attention. Nightscout will let you output  their current readings to a smart watch on their (and your) wrist stopping them from needing to dig out their cgm every few minuites.

You’ve a very young child – perhaps a toddler or a baby with T1 and want to keep a very close eye on their levels. Nightscout can help.

Diabetes technology has taken leaps and bounds in the last few years but the thing that causes lag seems to be the software. Without picking on them Medtronic are the perfect example – their Carelink uploading app is based on Java Applets and is slow, insecure and not that user friendly. The idea of going mobile or mobile alarms and monitoring has occured to them but a combination of regulation and inertia has stopped it happening.

Product Information

Retailer: Open source project +                   

Price: Nightscout the software is free to download but there are several pieces of hardware that are required. This usually includes an uploader phone, a couple of cables and a glucose monitor. Total cost can be anywhere from around £70 up to a couple of hundred pounds for a much more featured system.

About The Nightscout Foundation

The Nightscout Foundation grew out of the frustration of several parents of T1 children. They were involved in the tech industry and could see the potential to make their children’s life better but for a variety of reasons it wasn’t happening.

The Foundation focused on the Dexcom CGM and were able to create a basic remote interface for it that let parents monitor their kids remotely instead of asking them every few minuites “Can I see your pump?” and perhaps more importantly let them monitor their children remotely and have alarms go off when hey dropped too low.

Design

Nightscout is not one particular piece of hardware but rather an entire system that has to work together. The patient (child) wears a CGM and this reads their interstitial fluid glucose level. That’s normal. Nightscout uses a separate finger prick reader attached to a phone (or sometimes other systems) to ask the CGM every five minuites or so for a read out of current information. This is then uploaded to the net where it’s stored in a database. A separate virtual machine reads from the database, interprets the data and passes it out to a number of places. This might be as a web page you can read on your PC or phone. It might be on an app that also adds high and low alarms to your phone. It might be on a smart watch worn by yourself or your child that shows glucose levels or it might be pulled into another program on your computer (or another server) that lets you figure about more about the trends and graphs.

Complicated? Yes. At it’s simplest level it’s a uploader that your child carries with you that reads the CGM and uploads the data. Programs online that analyze it and then your phone or PC that gets the info.

Setting it up is not completely pain free process and is different for every type of system. We’ve set it up for the Medtronic 640G and Enlite sensors and while there are good instructions reducing the whole thing to simple steps there are a lot of them. If you’re not techincal with a good level of confidence this isn’t for you. It is however mainly a one time setup with occasional maintence so if you can get a friend who does have the skills to help you through it that is a viable possibility. Support is ad-hoc via Facebook groups and some local groups but works very well. I had one issue about two weeks in and got a response that showed me how to fix the problem in about 10 minuites.

So which systems is Nightscout compatible with? The first thing is the CGM – it needs to be either a Dexcom G5 or G4, Medtronic 530, 640g or Minimed Connect or a Freestyle Libre. All of the different systems have different levels of functionality.

Aside from glucose readings Nightscout can also be setup in many cases to provide other information

  • Rate of change – how fast the glucose is rising or falling
  • Insulin on board or Bolus on Board – how much insulin is currently in the system
  • Carbs on Board – how much of your recent food is still in you system
  • Pushover and alarmed notification – custom settable alarms for high or low levels or rate of change
  • Careportal notification – this lets you make notes on the graph and on a separate portal. This might be very useful if different people are responsible for the care of a child – every action could be noted and explained
  • Two day graph – shows you every change in the last two days that might affect you.
  • Integration with the OpenAps project. This is the first somewhat viable attempt at an open source artificial pancreas and it uses Nightscout as its feedback mechanism.

Environment & People

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Cost-Effective

Nightscout the software is free and if you set it up properly and use it normal amounts there’s no charge for either the server or online database storage. There are however costs for the extra hardware. This usually consists of an uploaded phone and possibly an OTG cable and blood glucose monitor. In our case Medtronic were happy to supply a complimentary extra monitor as a spare. The OTG cable was three pounds and I was able to find a number of lower spec Android phones for between £75 and £100. There are specific hardware requirements for the phone so make sure your purchase carefully.

I’d also recommend in investing in a case if you’re planning on taking Nightscout out and about with you as the phone needs to have an OTG cable plugged into it the whole time. One good knock can damage the port leaving you with a phone that you cannot charge and no working solution.

Setting Nightscout up in different ways is also possible – if you’ve a PC in Bluetooth range of where your child sleeps it is possible to plug your regular tester into it and use the PC to upload which would be a very low cost solution.

Requirements

Electric plugs or hook-upinternet accesswifi access

There are a couple of requirements to use Nightscout. Firstly a compatible CGM that you are comfortable using. Secondly a good level of technical ability and a willingness to experiment and get your individual setup running properly for you.

 

Verdict

Nightscout is something of an odd system. Everyone involved in the technological side of diabetes control for children will acknowledge that if we can get the price down and get enough education that more information and data is a good thing. The problem is that like all medical systems the result is usually one that takes years and is over expensive.

It’s also understandable to me that parents with the technical ability can’t just stand by and watch their child receive less than the best result when it’s inside their own abilities to make it work.  The problem is that it’s not tested and not always as reliable as we might hope it is. If I was a doctor or worked for a medical firm I’d be hard against Nightscout. It’s not been tested, studied and no efficacy has been proven. As a parent I’m a big fan – it deliberately does not let me affect her insulin at a distance but notifies me of what’s happening to her. This then lets me go to her and check and fix any problems.

It’s hard to setup and if you’re technophobic in any way not for you but if you’re looking for a way to keep an eye on your child and active alarms for lows and highs it’s worth further close attention and thought.

 

Ergohacks Essential

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The review is based on Nightscout on Azure using Medtronic 640g Enlite sensors during February, March and April 2017. This article was first published on the 21st of April 2017


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