Today, we’re thrilled to offer an in-depth look at T1D Exchange, the Boston-based nonprofit founded a decade ago that’s a major supporter of diabetes research using real-world data and patient feedback.
The past year has brought a change of guard in top leadership and some important shifts in the organization’s focus — specifically retooling its online community and initiative aimed at matching PWDs (people with diabetes) with clinical trials.
Here’s what he told us recently about his background and where T1D Exchange will be focusing efforts in 2020 and beyond:
DM) Hi David, can you start by sharing how you got involved with diabetes professionally?
DW) Ironically, it was just before my own diagnosis. My first job out of college was for a consulting company doing strategy work for pharmacy and biotech companies, and the first project I was put on involved looking at implications of the landmark DCCT trial.
We explored creating a patient-centered incentive system for both type 1 and type 2 diabetes, to ‘reward’ behavior that was productive and healthy in testing your blood sugars, achieving in-range A1C results, and integrating gym memberships for exercise. So I had to learn diabetes at that point, watching market research and videos (about) the challenges of living with this. I did that consulting job for a year-and-a-half, before going to business school to go into healthcare management. I had been premed for a year in college, as a psychology major, but decided that I wasn’t sure I wanted to be a physician. That’s how I found business in healthcare, and loved it. And it was there that I was diagnosed.
Tell us about your diagnosis…?
It was during my sophomore year at Wharton School of Business. I started noticing the symptoms that I recalled reading about during my first consulting project: frequent urination, constant thirst, losing weight, and blurry vision. That was all within a week and I knew something was up. I joked with some of the doctors that it sounded like type 1 diabetes, but I was 24 years old. They said, ‘Yeah, you’re probably too old for type 1.’ With the blurry vision, I went to student health and they took a blood sugar that came back at 594 mg/dL. They sent me to the hospital for two days and put me on insulin, and that was my intro to life with type 1. It’s been half my life now.
You also have a family connection to diabetes, correct?
One of the interesting things is that I was adopted, but I do know my biological family and have a fraternal twin brother as well as a biological brother and sister. When I was diagnosed, they asked if there was any family history with type 1. Because I know my biological parents, I was able to call them and get the history; there was no type 1 anywhere in the family. But then fast forward to about eight years ago: my biological sister texts me that her son was diagnosed with T1D at age 3. There’s clearly something genetic at work here.
Also interesting: My now-wife happened to sell insulin for Eli Lilly before I met her, so she knew all about diabetes. She’s been a sales rep and had stayed at a hospital taking saline (as mock insulin), to have a better understanding of what that was like. That’s the personal background and overlap with it all.
Did you go directly into diabetes specifically after your diagnosis?
No, I was in consulting for the pharmaceutical side for what eventually became part of Johnson & Johnson. I really didn’t think about diabetes much until I went on an insulin pump and joined J&J in 2005. They acquired the pump company Animas in early 2006, and I transferred there in July to lead strategic marketing. I was providing commercial input for new products in development and scoping out what the market potential and what new pump features should look like.
I did all that upstream activity at Animas for six years. That was the first time I was around so many people with type 1… dozens of people within Animas alone in addition to all the others through market research and patients. I was immersed, leveraging what I do but listening to the diversity of perspectives about what was important to people and what their preferences were. It gave me a good grounding in diabetes, while putting into perspective where I fit into that personally with my own T1D. I’ve now been wearing a pump for 14 years and a CGM for 11 years, and am very engaged in the technology and education.
Didn’t you also spend some time working at a company developing a non-invasive CGM, and also your own digital health startup?
I did work for both Echo Therapeutics on the global commercial planning and business development side, forn a non-invasive CGM system. And later I led all global commercial activities for medical device blood glucose monitoring company AgaMatrix.
Then in 2017, I started my own digital health startup Chronicare, using connected monitoring solutions to address medication adherence and outcomes for people with diabetes and chronic conditions. After 18 months, I decided to sell to a company to… join forces going forward. I’ve been able to see at the entrepreneurial level, what it’s like building a remote monitoring solution focused on population health. It’s been very helpful, being involved in building that from the ground up. The mindset, along with everything else, helps me chart a course here at T1D Exchange to build out data-oriented offerings for real-world improvements.
It seems like fate that all that led you to T1D Exchange, no?
Yes, it really does take me to a point where I feel I’m perfectly situated here at T1D Exchange to take us into the next phase as an organization. In my career, I’ve been focused on data most of the time. The internship at a health plan, and before that in business school looking at a diabetes management program. Then a pump company and looking at data management for the first CGM-integrated pump, and working with all the diabetes educators and endocrinologists and investigators on what information would be most useful. Moving to the entrepreneurial side and technologies, the power of data in population health is something I’ve been working in for the last several years.
All of that is extremely valuable in joining T1D Exchange at a time when we’re looking at how we integrate all these disparate data sources and build out the most compelling type 1 diabetes data set and pulling it through to make the most impact. I’ve observed, just in this first year here, the power of data to make meaningful change. Really, it’s all about how we empower people to use that data in a valuable way to effectuate change.
Can you talk about the changes T1D Exchange has seen in the past year since you first got involved?
I joined the Board in December 2018 and became interim CEO in April 2019. A year ago, we were transitioning and weren’t exactly sure what we wanted to be or if we’d continue on as it was at the time. There was a general recognition then that we had been getting more involved in data. We also knew that for sustainability, we had to find a way to operate in a more cost-effective manner. The old approach T1D Exchange had in gathering patients at clinics and gathering data there was very labor-intensive and costly. The org did realize we had to move in a different direction, and were in the midst of that when I joined in late 2018. It was really the start of building some new tools and approaches.
One of the stands I’ve felt strongly about is that as an organization, we should be less about long-term ideas. We should be focused on things that can have a near-term result.
And your Quality Improvement Collaborative is one of those new near-term efforts…?
The Quality Improvement Collaborative is a big, high-priority program for us. We’re working with facilitators and advisors from a tremendous group of top clinics working on initiatives to improve the care they deliver. We’re helping providers with their data and combining with it other sources to help drive change. That includes CGM updates, because there’s plenty of evidence that CGM usage drives better results for patients when they use it. So working through the barriers to get it used and done correctly is a big focus, and we’re working to provide an infrastructure and data around that.
We’re also looking at depression screening, because we know that mental health issues can really hinder someone’s ability to focus on their health.
What about the T1D Exchange Registry?
That is our online patient registry, where we’re gathering patient-reported outcomes and opinions on a range of diabetes topics. Currently, there are about 5,000 people in there now and we hope to be up to 10,000 by mid-2020.
Over the past year, we asked some questions of an initial group and got responses and now we’re setting up sub-studies… through other surveys and research. There’s a real opportunity to gather input from a diverse group of patients on a number of things in diabetes. We have so many interesting trends now with burgeoning technology – from closed loop systems, new forms of glucagon, and this gap that exists where people aren’t using (the newest tools). We want to make sure that our registry can be used for specific research and care improvement, and we’re gathering data each day that can go toward that.
Why do you think data-driven research is so important?
I’m a big believer that some of the (diabetes) dysfunction that’s out there can be improved by better data. But then (you have to) dig in and figure out how to operationalize that data, pull it through and make it easy for patients and providers to act on.
One point to illustrate this: When I joined Animas in 2006, I had never had an A1C under 7.0%. Several of my endos had never felt there was anything wrong, but they had never really examined my insulin settings too closely. So during my orientation at Animas, I was getting up to speed on the pump and reading through materials, when I saw a presentation by John Walsh that he’d presented at the Children With Diabetes conference in 2006. I read through that and saw the dosing rules, and did some quick math to figure that the correction and insulin-to-carb ratios I had were way off. They weren’t what a typical range would be, based on big data sets. I did the math on the spot, and changed my pump settings without talking to my doctor. Those formulas worked perfectly and I saw results immediately and didn’t have as many swings!
A month and a half later, I got my A1C and it was 6.8 for the first time ever. It was pure simple data, and those formulas were derived from a bigger data set that was pooled, evaluated and used. So I look at that as an example, in looking at a data set and pulling it through to work into your daily regimen. Now we have better tools, but I’m always amazed at how often it comes down to simple data that can help people do better.
Now that you’re at the helm, what do you think needs to change at T1D Exchange going forward?
Too many organizations are overlapping and doing similar things. We’re as guilty as everyone else. We’ve refreshed our strategy, so that we’re partnering more and trying to access what others have already done, while focusing on items that are more distinct for us. We don’t want to compete with other diabetes research organizations. We want to use research teams to help us empower others to use our data, in order to really make a difference. We want to make sure that data we’re collecting has some value in a specific way. We want to amplify each other, in these semi-overlapping circles.
Does that mean you’ll be eliminating some of your programs?
We aren’t going to fund long-term research efforts, and that’s behind why we decided to wind down our BioBank (collection of biological samples). My thought process was, we have precious resources and that’s a significant chunk of our budget that we could be putting toward something more unique. Someone else could pick up that BioBank effort, if we transferred it over to them. That’s what we are in the process of doing.
What about your online Glu community?
We’re trying to re-orient. We’ve got this online community just like Beyond Type 1 has an online community and so many others have one. There are many overlapping online communities, that may have slightly different focuses. We looked at that, and saw that we really treated Glu like its own stand-alone brand – even within our own walls. There were people who didn’t know that it was a T1D Exchange effort, because of that branding. As we try to grow our integrated data set and grow the collective value and insights, we think there’s a better way to do that as T1D Exchange. Some of that will be getting people off the Registry where it’s a formal research effort, and the questions being asked are more clinical. We still want to get the pulse of the community and a lot of that will continue, but it will be orchestrated more as a T1D Exchange initiative that helps what else we’re doing.
How would you describe your vision for the organization going into 2020?
Our focus as an organization is the Quality Improvement Collaborative and Online Registry, and being able to support people within the ecosystem – patients, providers, industry, payers, advocacy. We want to make sure our information can be put to use, and we’ll help them with that in a number of ways. The point is, we aren’t just a data analytics org and that’s it. Rather, we will get involved in helping to take action with that data, and if we can support other orgs and their efforts, awesome! If we need to get involved with industry, great. We may do the work ourselves or provide the data to them so they can go with it themselves.
We really take to heart the
Thanks for taking the time to talk with us, David. We look forward to seeing what comes next for T1D Exchange!