This past holiday weekend, as hundreds of thousands of loved ones caring for people with diabetes know, the Dexcom Follow app stopped working for more than 48 hours. The outage made me realize how dependent I’ve become on being able to see our daughter’s blood glucose number all the time–how reliant I am on using Follow as a safety net. And how vulnerable I feel when that safety net is gone. (Our daughter, Bisi, was diagnosed when she was six, in 2012. First she started using a pump; then, in 2014, the Dexcom CGM; we started being able to see her glucose number on our phones the following year.) Judging by the 5,500 (and counting) comments on Dexcom’s Facebook page in response to the outage, many people felt the same way I did.
The Follow app has become an integral part of how we help Bisi manage diabetes. We rely on it particularly at night, to alert us and wake us up if Bisi’s blood sugar has gone too low or too high. But, really, we rely on it 24 hours a day, because it helps give us peace of mind as Bisi spends more and more time without us—at the park; walking to the movie theater; playing sports; hanging out at friends’ houses.
The outage lasted from around 1 am EST on 11/30 through the early morning hours of 12/2. Judging from a sampling of the comments on Facebook, the problem wasn’t so much that parents suddenly weren’t able to see their children’s numbers, it was more the company’s lack of communication. Normally if the Follow app stops working, you receive a “no data” alarm. But when the app went down—at a time when most parents and children were asleep—there was no alarm, so many parents slept right through the outage. We were staying in a hotel, and normally would have been completely reliant on the Follow app to alarm us if Bisi went low or high. The plan was that we’d sleep in a separate room from Bisi. But over the previous day or so, she had been having sensor error after sensor error, which meant that she wasn’t getting blood sugar readings for hours at a time (I think the sensor error problem and the Follow problem were related; but my only evidence for that is that several other people posted about the same problem on the Facebook page). I decided that we should change her sensor, and have her sleep with us, since it was already past 11 p.m. and a new sensor takes two hours to warm up. When I woke up to test her around 2 am, I noticed that her phone still said “sensor error.” When I woke up again around 3, I noticed that her phone now listed her blood sugar, but on my phone the display was blank. From that point until we got back to my mother’s house at 7 pm, I thought the problem was an individual one on our end. I kept on checking the hotel WIFI, and bugging Bisi to restart her phone, which usually straightens things out. Meanwhile, other parents were having more serious problems than ours. To sample a few of the comments on Facebook:
“I woke up in a panic at 6am after I realized the share app went down and I hadn’t received a single ‘no data’ notification. No alert, nothing. My son went unattended from 1am-6am. A bit terrifying and unacceptable. Hopefully these problems get resolved today and we can make this system better for all!”
“I received no alerts and something just told me to get up and check my son. Glad I did, his BG was 59. We should’ve received some type of notification.”
“It went out in the middle of the night and we had no way of knowing. My grandson ended up in the hospital because of this…. We can manage without Dexcom and have in the past. But this is our safety net and it had a huge hole in it!”
Parents reported the ways they were trouble-shooting, going back to pre-Follow habits, including waking up every two hours to check their child, or hooking up a baby monitor so they could hear the alerts.
Again, looming larger for people than the breakdown of the Follow app was Dexcom’s failure to communicate about it. By the time I got back to my mother’s house on Saturday evening, about 18 hours after the app had gone down, I had started to wonder if the problem was a global one. I checked Dexcom’s web site, but couldn’t find any information. But when I Googled “Follow app not working,” I found a thread in Dexcom’s FAQs, pointing people to their Facebook page. I learned there that people who had called Dexcom got a recording, which said nothing about the outage. That ten hours went by between updates posted by the company; that, in trying to troubleshoot, some parents had deleted the app from their children’s phones, and then could not reinstall it; and that Dexcom didn’t yet know the cause of the outage (or when it would be fixed).
As one parent wrote: “As a company that provides a medical ALERT device for its users you owe it to ALL of use to communicate issues at the first onset. Not 10+ hours later. Its extremely unacceptable and irresponsible. Technology issues happen but there is absolutely no excuse for the radio silence you have to the dexcom community. You were no doubt flooded with calls when Share went down last night but didn’t formally address it until this morning.”
Another wrote: “Most parents aren’t upset about having to do more checks or get up in the middle of the night. We accept that disrupted sleep and close monitoring is a part of our lives as T1D parents. What is upsetting is the ridiculously long delay in Dexcom updating or notifying anyone that they were having an issue with their technology, especially considering that it took place when many children were going to bed or in bed already. These are our CHILDREN. We will do anything for them, late nights, disrupted sleep, extra vigilance, AND call out a company, who is very much a part of our children’s daily lives and health management, who fails to communicate in a reasonable time period. At least TWELVE HOURS later before any communication was done is NOT acceptable.”
And another parent listed what Dexcom needs to do differently if this ever happens again:
Dexcom, we need:
1. Alert on Follow app when Share servers are down so we can set alarms to check on our kids
2. Push notifications so we don’t tear our hair out troubleshooting
3. Status update on hold message on phone system
4. Status update on website, accessible from home page
5. Hourly updates on social media (or at least more often than every 10 hours!)
6. More redundancies so this doesn’t happen again
For many parents, though, the outage seemed to increase their appreciation for Dexcom, and how their Follow app makes the difficult job of parenting a child with type 1 just a little bit easier. As one wrote: “Thank you for working on this during the holiday weekend! We are grateful for dexcom and the safety and security it provides. We are happy that it is only the follow app not working. We anxiously await the follow app repair.”
As the hours ticked by, Dexcom started posting updates more frequently, including one talking in vague (and, to me, unsettling) terms about the potential cause: “We are still investigating official root cause. However, we have determined that a server overload occurred due to an unexpected system issue that generated a massive backlog, which our system was unable to sufficiently handle.”
The crash over the weekend raises some interesting questions, including, how much should we or can we rely on life-protecting applications like this one, which rely on the Cloud? We all know that servers crash and that apps aren’t always reliable. But I would argue that a company like Dexcom, whose sole business is to alert people when their health is in jeopardy, faces a higher standard than just about any other company when it comes to keeping their servers working and alerting people when they break. Dexcom is a publicly traded company that is growing rapidly and doing very well, with third quarter earnings this year of $396 million, up 49% from last year at this time. Its U.S. business grew 53% over the third quarter of 2019, which may partly explain the “massive backlog” mentioned above. But its success, as with all companies, relies not just on the quality of its product, but on its communication with its customers. The leaders of Dexcom, of course, know this. One of their stated goals on their Web site is: “Be dependable. Inspire confidence within our community and in one another.” Again, server outages happen. I’m guessing that something like this will happen again (hopefully it won’t last 48 hours…). And I’m guessing that next time, Dexcom will do better.
In the meantime, I was happy (mostly…) to hear the alerts start pinging on my phone on Monday morning. I was glad that I’d be able to keep an eye on Bisi’s number while she was at school. But Bisi felt a little differently. I asked her over breakfast how she’d felt about the outage. “It was good. I liked that you guys weren’t bugging me as much as you normally do.”
Okay. I guess things really are back to normal.
