When John and Pam Henry's daughter was diagnosed with type 1 diabetes at age 6 in 2003, they immediately recognized the need for a tool that could help them keep tabs on her health and safety while she was away at school. Not only that, but they needed assistance navigating this new world of countless hours spent on the phone between doctor's offices, school nurses, health insurance officials and friends and family.
What they ended up creating was a web platform called BlueLoop that would allow efficient logging of glucose data that could easily be shared with all the relevant parties via text messaging or email.
That was more than a decade ago, and their daughter Sarah, now 22 (one of three kids), is studying nursing to become a certified diabetes educator. But the Henrys are still hard at work on BlueLoop, which they've grown into an incredible tool and program that helps thousands of newly-diagnosed families -- who may not yet know much about diabetes or be ready for the world of ever-connected advanced diabetes technology.
Notably, BlueLoop was listed in the October 2018 issue of Parents magazine as one of the top 20 innovations impacting children's hospitals across the country, and the only one focused on diabetes. And in early April, BlueLoop snagged a key sponsorship from Tandem Diabetes Care in which the California pump company will promote BlueLoop tool to its customers, and vice-versa for any BlueLoop users who may be interested in starting on a pump.
That's just one of several agreements John Henry tells us they're working on, in addition to their network of school nurses, camps, and hospitals, as a way to spread awareness of this helpful platform and mobile app aimed at families.
"Families are Overwhelmed"
"Families are overwhelmed in year one, when they may not be ready for other connected devices," the Texas D-Dad said in a recent phone interview. "The pressure to stay between 80-150 mg/dL in that first year is unreal. It's causing unnecessary stress and anxiety, because of the hyper-focus on blood sugars. We're 100% in support of CGM, but these newer connected devices are creating this mindset. With BlueLoop, we can give these newly-diagnosed families a bit of perspective so they don't have to spring into panic mode. There aren't a lot of resources out there for what we do."
BlueLoop has generated 17,200-plus notifications in the 16 years since first launching it. Users include individual families who want a more "simple" way of logging diabetes data without all the bells and whistles of more complicated D-tech, along with primarily school nurses, diabetes camps, hospitals and clinicians.
To support their work, the Henrys established a non-profit called My Care Connect Foundation about five years back.
"We're like General Motors in some ways... we produce a car and we need dealer networks to help us sell them. So we rely on dealers, so to speak, like school nurses camps and hospitals to make sure newly-diagnosed families who are just getting behind the wheel know this is a feature, to have on the dashboard as they're learning to drive this new car."
John tell us they've added 3,000+ new users to BlueLoop last year -- a 50% increase over the year before. That's on top of the 650 new school nurses brought "into the loop," so to speak, and a majority of their families using BlueLoop are in that first year of living with type 1 diabetes.
The BlueLoop Diabetes Platform and Mobile App
Here's a look at what BlueLoop is all about:
What it Does: This is an Internet-based web platform that does not require a mobile app, although there is a BlueLoop app available for Android, iPhone, and iPod Touch. You create an account -- either family or a school version -- in order to start logging blood sugars, carbs, exercise and other diabetes data. Yes, it is all manual entry, but John doesn't believe that's actually helpful for the newly diagnosed to interact with their diabetes data. It works by sending text messages or emails between parents, clinicians, and school nurses. You can also upload documents that include school 504 plans, doctor's orders, medication doses, and immunization records.
It's free. BlueLoop is 100% free for people to use. This is the business model that the Henrys want to ensure remains in place, so that families never need to pay to use it. While some diabetes camps may have an infrastructure cost associated with cell or WiFi connections as well as iPads to use log in, the BlueLoop platform itself will remain free. That's where sponsorships come into play, John says.
For Newly-Diagnosed + Vulnerable Populations: Certainly there are plenty of other diabetes apps out there that track, record, and share different aspects of diabetes data. This one is unique in being aimed at newly-diagnosed families, we're told. John says that for families new to diabetes, there isn't much out there to help with care coordination, and they're usually required to keep written or digital logbooks in those first months following diagnosis. Even those who go on CGM and connected CGMs and pumps early on may be getting D-data but don't understand the full picture of what it all means. This is especially important to consider for vulnerable populations within the Diabetes Community, such as those economically or financially at risk for not having access to connected devices or more advanced tools.
"BlueLoop can bring peace of mind during the day." He adds that once diabetes management becomes more natural and those connected devices start getting weaved into their worlds, some families may not need to use BlueLoop anymore.
Insulin Dosing Calculator and Override Tracking: Introduced in 2017, this is one of the newest features that BlueLoop offers and is somewhat unique in the digital diabetes world. Think of a traditional insulin dosing calculator and dose tracking, combined with an emoji-using feature to keep tabs on the reasons why someone might not follow that particular insulin dosing advice. You can monitor the doses taken, as well as mark them when different amounts are taken from the suggested doses -- in case you're unsure of carbs, before or after exercise, a bedtime correction, fear of hypoglycemia, etc.
John says, "We use jelly bean characters that look like little Minions fom Disney. Users can choose multiple reasons, and those little icons show up in reports shared with hospitals. So when doctors run reports, they can see the behaviors and talk about them in ways that may not be as obvious to those newly-diagnosed. That can help the clinical decision-making to bring in a nutritionist or help the clinician focus on what the family's behaviors are with additional insights."
Sick Days: Working with Children's Hospital of Wisconsin, MyCareConnect has established sick day protocols that provide families using BlueLoop guidance on navigating illnesses and diabetes. There is an online guide with a survey asking questions about blood sugars, the ability to eat or drink, and ketones. Handy info, especially for those who haven't lived with T1D for very long!
BlueLoop for Type 2: We're also intrigued to hear that MyCareConnect has a vision for a T2D-specific version of BlueLoop, that would offer the easy diabetes logging and sharing functionality, along with reminders for "medication adherence" and motivational resources. The key is to keep it simple, John says, and they hope to raise funds and add this version by the end of 2019.
Taking BlueLoop to Diabetes Camps
Aside from being aimed largely at school nurses and those in the newly-diagnosed D-community, BlueLoop's integration at diabetes camps is something the Henrys have been focused on for many years now. They've brought BlueLoop to dozens of diabetes camps across the country, and they hope to keep expanding that number while offering BlueLoop to camps for free.
John says some camps are hesitant because of limited WiFi signals, but that doesn't mean those settings are out of luck. They are exploring using low orbit satellite technology to bring additional cellular connections for remote settings, where a lower upfront cost for hardware and just $400-$500 a year would allow a BlueLoop system in those camps.
They're also focusing on research at D-Camp. Last summer, BlueLoop was rolled out to more than 600 campers and 60+ staffers using the tablet-based version to collect diabetes data during the course of the summer. They plan to continue that in 2019 and 2020, using the data collected to help wok with families and show the benefits of this type of tool for camps and clinical offices.
We've been fans of Pam and John Henry and their BlueLoop service for many years now -- and even with all the connected care tech these days, we think it's critical to have a platform like this to onboard and support the newly diagnosed.