The Boston-based nonprofit T1D Exchange has been posing a “Question of the Day” to thousands of people living with type 1 diabetes (T1D) for nearly 10 years now. Questions run the gamut from “How do you [dose insulin] for pizza?” to “Do you own a breath keytone meter?” to “Do you expect to take a ‘device vacation’ for at least a few days this summer?”
What a treasure trove of information the T1D Exchange must have amassed by now!
On first glance, this “Question of the Day” program looks to be a seamless and effective way for people who care about diabetes to ponder questions, share answers, see statistics, and interact with other like-minded folks — all worthy and valuable functions.
But if you take a deeper dive into the T1D Exchange and this nearly decade-year old program, you’ll find much more than that.
The questions, answers, and much of the community that takes part in it constitute a living, breathing, thinking, and sharing database, helping not just one another, but to drive research to improve the lives of those with T1D across the board.
David Panzirer, trustee of The Leona M. and Harry B. Helmsley Charitable Trust — funders of the T1D Exchange — explained that those were their exact hopes for the Question of the Day program when it launched a decade ago. He worked on it with Dana Ball, program director of the T1D Program at the Helmsley Trust and former executive director of the Iacocca Foundation.
“The real impetus was [when we looked around the diabetes research landscape] and thought, ‘where’s the data?’” Panzirer told DiabetesMine.
“The truth is, it did not exist in places most could access. It was off in vaulted places that no one else was willing to share,” he said.
That meant researchers working on diabetes theories and treatments often had to add months, or even years, to their research timeline while they hunted down needed data. This contributed to why progress in the diabetes landscape seemed to come at a crawl, he said.
Today, the T1D Exchange, through both those Questions of the Day and their patient Registry that sprouted from that, now has treatment data and lifestyle information of about 30,000 people with diabetes. Of those, about 15,000 have opted to be part of their Registry, which seeks annual medical and other data and often asks members to participate in studies.
The T1D Exchange data culled from both of those sources has been presented in studies and programs around the world and continues to inform researchers, product manufacturers, and more on what the diabetes community needs.
All that data exists in one easy-to-access place, and is helping, many say, to speed up the process of research and bring new deliverables to market. Otherwise known as: improving the lives of people with diabetes.
And while doing all that heavy lifting, it also still continues to provide people with diabetes and those who care about them a place to chat, learn, vent, and adapt.
“We use it as a platform to engage but also to share,” T1D Exchange CEO David Walton told DiabetesMine. “It’s a great way to get [a large group of people] to respond.”
Questions of the Day come from a variety of sources. The T1D Exchange team holds monthly brainstorming sessions, Walton said, to hone in on both what they may be wondering, what has bubbled up in the community at large, what companies and researchers may be curious about, and some staples, like the quarterly “What is your A1C?” question.
Anyone can opt in to respond, and much of the conversation, including tip sharing and support, happens online as each question is released.
That, Walton said, is where the support and sharing they know the community appreciates takes place.
Panzirer said it took them a solid 2 years and $20 million to get to the point of being a strong data collection program. From there, they both made that data accessible to researchers and other stakeholders and used it to begin what they really hoped to do: Push for faster, smarter and more impactful research and breakthroughs.
Their first step came when they’d only gathered about 10 percent of the group of respondents they have now.
With data from about 4,000 people, he said, they went before the Food and Drug Administration (FDA) and showed them two things: that the average A1C among their base was at 8.4 percent, and that 10 percent of the participants had experienced a “severe diabetes event” [blood sugar either low or high enough to require assistance, hospitalization, or both] in the past year.
“I can tell you, their jaws were on the floor,” Panzirer remembered of the FDA team. “They had no idea. Now, we had clinical proof that the perception many had that insulin works fine and people with diabetes can easily do well with it wasn’t a reality.
“Without a doubt,” he said, “we were able to open their eyes and shine a light. It shined a light on just how poorly people were doing. We had the data to prove it.”
To illustrate how this can culminate in helping people in real life and pushing research and industry to create life-bettering deliverables, Panzirer points to the success of Locemia Solutions.
Robert Oringer, an innovative businessman and the father of two sons with T1D, had an idea: What if emergency glucagon could be easier in every way: to carry, to administer, to store and more? After all, as the father of two sons with T1D, he knew well how bulky, stressful, confusing and even frightening the classic “red case” emergency glucagon rescue kits could feel.
He approached the T1D Exchange, who asked their community via Questions of the Day all about their feelings around rescue glucagon to confirm what Oringer saw. They jumped on board gathering data.
With that data and confidence in his product, they formed a committee of key opinion leaders like leading diabetes educator and author Hope Warshaw and well-known Yale endocrinologist Dr. William Tamborlane, and then went on to run clinical trials.
That data and study result information gave Locemia the platform to reach out to bigger names. Soon, the pharma giant Eli Lilly and Company took over the project.
Today, the product they created, the first-ever nasal glucagon Baqsimi, is available on the market, making carrying and using emergency glucagon a tremendously simpler, less stressful and more palatable option.
In other words, the data improved lives.
The timing of their first FDA meeting lines up, too, with the period of time when the FDA agreed to streamline the review process for continuous glucose monitors and after that, smarter insulin pumps and hybrid closed loop systems.
Today, just a decade past all of that seeming like a pipedream, new products are coming faster and faster.
The data that so many can access, Panzirer said, is a key reason why.
“We forced a whole field to accelerate faster,” he said. “We forced the competition, and that’s fueling more and more improvements.”
While all this is going on, the questions continue to offer moral and educational support to thousands on a near daily basis, something Walton says they see as vitally important as well.
An example of how a question can help the community while informing researchers, T1D Exchange marketing manager Sarah Tackett told DiabetesMine, works like this:
They decided to ask the question, “Do you brush your teeth after you treat a low?,” after a dentist with a newly diagnosed child brought it up as a suggestion. This is an issue especially around nighttime lows, when people just want to go back to sleep after treating with sugar, but worry about damage to their teeth. Parents of children with T1D tend to be particularly worried.
The responses came in fast: 85 percent of respondents said they do not brush their teeth after treating a low.
From that came a hearty, helpful, and interesting discussion among respondents on the Question of the Day page on their website. People shared feelings on the topic, and asked for advice: “Phew! I’m not the only one!” and “Is there a better way?”
It can be “a very special thing” to see folks connecting and helping one another around the questions, Tackett said.
They don’t stop there, though.
“We then send [the info] on to the research team,” she said, so they can consider if there is anything to dig deeper into.
So, while the data may someday be important to a study, it becomes important the moment it sparks discussion, she said.
Questions can also give respondents a sense of power and input, she said. They may ask things like “What features on a pump are most important to you?” to help guide inventors and manufacturers toward what people want, an empowering experience for most.
“It’s a great springboard,” Walton agreed.
The data also does another important thing, he said: It inspires bloggers and reporters to dig into topics that the public wants to learn more about — or needs to hear more about.
In other words, increased education around diabetes is a byproduct as well.
As it celebrates 10 years, the T1D Exchange and its Registry and Question of the Day are far from done, said Walton.
They continue to collect data and welcome new people into their Registry with the goal of pushing things forward.
For Panzirer, who saw a second daughter diagnosed with T1D in 2017, it must and it shall move forward. He sees the same power today as he saw back when Ball suggested this to him long ago.
“We are fortunate,” Panzirer said. “Dana was a visionary who got this whole thing rolling. I will be forever grateful to him.”
Ball, who has retired from the role since, was the right person to partner with him to make this happen, he said.
“I’ve been a bull in a china shop. I told Dana I’m not here to make friends. I’m here to bring change. Are we successful in that? No, not until we don’t have to use any of these [diabetes tools] anymore. And we will keep pushing until we are there,” Panzirer said.