Smashing “One-Size-Fits-All” Diabetes: How Do We Personalize Care?

By Christie Auyeung

Every March in Austin, Texas, the SXSW Interactive Festival gathers the brightest minds to lead five days of panel sessions and hands-on instructional workshops on the latest in cutting-edge technology. Our team attended to hear updates on diabetes technology and digital health, which included a panel on “Smashing ‘One Size Fits All’ Diabetes Care at Least”:

• Manny Hernandez (Senior VP of Member Experience, Livongo Health, Mountain View, CA)

• Scott Johnson (Communications Lead, mySugr, Vienna, Austria)

• Justin Wright, PhD (VP of Drug Delivery Innovation, Eli Lilly, Cambridge, MA)

• Kelly Close (Founder, The diaTribe Foundation)

The discussion offered a realistic assessment of the many challenges and opportunities in diabetes care, particularly how to move away from the “one-size-fits-all” model that is unfortunately still too common.

Top Five Themes and Quotes

Understanding the specific behaviors, barriers, and motivators different patients face may be the biggest obstacle to smashing one-size-fits all care.

• “We don’t really entirely understand the challenges to personalizing diabetes care. We all want to live a healthy life, but there is a knowing-doing gap and we don’t understand it very well. We need to spend some time and energy figuring this out.” – Mr. Johnson

People with diabetes are human beings with unique life circumstances. We need to understand people just as much as we need to understand diabetes.

• “The thing we lack is human perspective. We aren’t capturing the personal story that is occurring in a patient’s home at 11 pm at night after a crappy week. Understanding the patient journey and the user experience – that’s where the investment needs to be made.” – Dr. Wright

• “We are people before we are people with diabetes, and when you leave the very controlled and safe environment where a trial is taking place, people are constantly making decisions and changes that are not the way the product was conceived of and tested for. Our friend Jeff Hitchcock who runs an organization called Children with Diabetes likes to say that ‘life is lived off label.’” – Mr. Hernandez

To truly individualize therapy, we need to generate actionable insight from existing data.

• “Wearing a CGM has been revolutionary for me…CGM also just collects a ton of data; so much data that I can’t make sense of it. This can be feeding into a system that can run invisibly in the background, smartly combining it with other pieces of data that we’re not properly collecting yet, making sense of all that – that’s what personalized healthcare should be.” – Mr. Johnson

We must build technology people with diabetes want to use.

• “We’ve seen technology enable other fields to scale – healthcare and chronic disease has been more elusive. Not only do patients and doctors need to have access to new solutions and tools, they have to trust them and want to use them every single day. That means we have to create solutions that are as addictive as the iPhone.” – Ms. Close

Personalized care does not mean a transition to automated systems that replace clinicians – rather, personalized care should free providers to work more closely and intimately with patients.

•  “We have to take the whole person with diabetes into consideration if we really want to achieve personalized care.” – Mr. Hernandez

• “I would love to see more work moving into computers and allowing caretakers to do 'human' work. Fundamentally, computers are good at being computers and humans are good at being humans. We need to free our human caretakers to be more human because as much automation and algorithmic magic we’re going to do, I still need a lot of human contact in my diabetes care.” – Mr. Johnson

Panel Discussion: Smashing One-Size-Fits-All Diabetes Care

Ms. Close: Thanks so much for ALL you are all working on to move forward life for people with diabetes. If you could invest in one of the following, which would you choose and why? Better patient tools, better physician tools, or better payer tools to personalize care? And let’s assume access isn’t a problem.

Mr. Johnson: Respecting that I have to choose one, I would have to choose patient tools. However, creating a tool isn’t enough. You have to empower the people using the tool to use it correctly. I think one of the most exciting ways to do that is peer-to-peer support, and I think that’s a scalable way in today’s world.

Mr. Hernandez: I find it extremely hard to pick one, and I would say yes to all three. Having to pick one, I would say physician tools. An overwhelming number of people with diabetes are diagnosed by their primary care physician, and practices there are far from current. The American Medical Group Association (AMGA) just launched a 3-year type 2 diabetes initiative called Together2Goal, which is aimed at packaging best T2D practices and putting them in the hands of their member Medical Groups across the US.

Mr. Wright: We’re seeing a convergence of life sciences, clinical innovation, and engineering best practices. The thing we lack is the personal story that is occurring in a patient’s home at 11 pm at night after a crappy week. Understanding the patient journey, the user experience, the investment needs to be made there.

Ms. Close: Thank you. Tell us about a technology or tool that shows a lot of promise for personalizing diabetes care.

Mr. Hernandez: For the first time in my memory, I’m starting to see things like what a company like Companion Medical is doing, which is trying to turn an otherwise dumb delivery device like an insulin pen into a smart delivery device via Bluetooth connection. It sounds basic, but for the first time the innovation in insulin delivery isn’t just on pumps but on devices that are used by the majority of people on insulin. 

Dr. Wright: What that ladders up to is having algorithms in the background and understanding what data we’re collecting. There are several talks this week referencing algorithms, and as we build data sets and pull this together, these adaptive algorithms are going to bring data together. This is one of the most exciting things over the next five years.

Mr. Johnson: Wearing a CGM has been revolutionary for me. And for those of us who adopted the technology early, it’s easy to forget that it’s still a very young technology. A CGM allows me to wear a small sensor that feeds data to a receiver – in this case my iPhone. It alerts me if my blood glucose goes above or below range. It’s also just collecting a ton of data; so much data that I can’t make sense of it. That can be feeding into a system that can run invisibly in the background, smartly combining it with other pieces of data that we’re not properly collecting yet – that’s what personalized healthcare should be.

Ms. Close: That’s fascinating. Don’t we need to move more towards standardized communications protocols?

Mr. Hernandez: Like any of you in the audience who have T1D, you know that if you show up at your doctor’s office, you hand over all your devices and then go through the fascinating process of finding all the right cords and cables. If you’re lucky, then you might get your data downloaded. It’s very primitive.

Mr. Johnson: I would love to see more work moving into computers and allowing caretakers to do “human” work. Fundamentally, computers are good at being computers and humans are good at being humans. We need to free our human caretakers to be more human because as much automation and algorithmic magic we’re going to do, I still need a lot of human contact in my diabetes care.

Mr. Wright: If you go back 15-20 years and you’re a patient in North Dakota, you’re alone trying to figure it out. Peer-to-peer support and our ability to connect people across the planet is the best opportunity for scalability and for building a network of information and people.

Ms. Close: It’s cool to think about. Advocacy has come a long way and patients feel strongly, which is what we are seeing in the #WeAreNotWaiting campaign. We are seeing more enthusiasm at FDA and changes in interoperability. Maybe it’s slower than we want it but it’s still a step in the right direction. I’d also like to see a greater focus on mental health, which I think would translate into fewer long-term complications. When you think about an ideal world, what does fully personalized care look like? How optimistic can we be?

Mr. Johnson: I think we are finding ways to take some of the very mechanical aspects of a data driven disease and translate that into human care. We can abstract all the layers of data and make it a little more visible and present it in ways that resonate with the individual. The common scenario at endocrinologist appointments is that the doctor will look at your logbook and ask about high or low glucose numbers from five days ago. How many of you can remember what you had for breakfast five days ago exactly? Neither can I. We need to abstract some of the more mechanical data parts of diabetes, and turn as much as we can into a more human centered care picture.

At the end of the day, each device has its own software and its own data and its own report. You see blood glucose on one report and insulin delivery on a separate report. None of these devices talk to each other, and it’s very burdensome to put this together.

Mr. Hernandez: I would describe it through a persona – let’s say her name is Maria. She’s the kind of person that thinks about everyone in her family before herself. She’s struggling with her diabetes control but nobody knows and it goes completely unnoticed. It only gets worse and worse. The thing is that we have the tools and mechanisms to passively acquire data and automatically upload the data, so we can know when Maria needs help and we can know that she’s the type of person that would not ask for help. It doesn’t need to be people with diabetes that come to her aid; it could be others that love her. Perhaps her neighbor says, “let’s go for a walk.” So we need to apply that kind of thinking to diabetes.

Ms. Close: So I wanted to talk about how devices and drugs are analyzed in randomized control trials where we control for a lot of what happens in real life. But that doesn’t tell us a lot about real life itself. Should we be taking a look at how commercial products get tested?

Mr. Hernandez: The reality of trials is that they miss that we are a lot more whole than our type of diabetes or an A1c. We are people before we are people with diabetes, and when you leave the very controlled and safe environment where that trial is taking place, people are constantly making decisions and changes that are not the way the product was conceived of and tested for. Our friend Jeff Hitchcock who runs an organization called Children with Diabetes likes to say that “life is lived off label”. Minority groups are severely underrepresented in clinical trials. This is important if you look at type 2 diabetes: that’s where the biggest incidence lies. Do we know which particular therapies are the best for those folks? We need to start looking at more real world situations.

Ms. Close: YES! Yes, that is exactly right. The next thing I want to ask about is face-to-face interaction. How do we scale these solutions to reach many more people?

Mr. Johnson: I keep coming back to the same point. I think there should be smarter ways to crunch my diabetes data and help my doctor reach insights about my life with diabetes. He doesn’t have time to analyze all of my diabetes data and it’s unrealistic for me to expect him to do so. We need smarter systems for him to come to those conclusions while I’m with him, so that he can provide me with lifestyle changes that will impact my data by the next time I see him. But really, he NEEDS smart systems to help him do that. He can’t be asking me, “What did you have for breakfast five days ago?” That doesn’t make sense when we have all these tools available.

Mr. Hernandez: If a particular patient has extremely good glycemic control, does that person need to see physician for anything beyond just refilling their prescription? Probably not. Would that time and energy be best spent focusing on where physicians can have the most impact, on where people are falling through the cracks?

Dr. Wright: The social media tools we have right now are one of the most promising aspects of the future. I just heard that 150 million Americans have an iPhone. The number of social media channels is huge. You can find someone that you are comfortable with via video or via chat or something else.

Ms. Close: One thing I think about all the time is the crisis in medical care for all of us with diabetes. We know that doctors’ time constraints are not going away. What do you think will help healthcare providers the most?

Mr. Hernandez: We are even applying one size fits all to say we need doctors to see patients the same number of times each year. Some patients need more support to be empowered, and others don’t need as much. We need to help healthcare providers understand how to customize this care to fit their time constraints.

Ms. Close: There are pretty much the same number of endocrinologists as when we were all  [references the stage] diagnosed, and there are 20 million more diagnosed patients in the US alone. We need to make diabetes care an engaging pursuit for doctors and help them be successful. I don’t see these numbers changing or enthusiasm increasing around the endocrinology profession.

Mr. Hernandez: If you were to get the same customer service experience that you get in healthcare with your cable provider or phone company, you would ditch them for somebody else. When you are living with a chronic condition you are kind of stuck – you can’t say, “screw you, I’m going to Verizon” – these are decisions that many of us cannot afford to make. We are left as the glue that has to hold all the pieces together on top of all the things that managing a chronic disease entails. One month ago, I placed an order for new pump supplies, and they never showed up. Nobody called or reported why, so I called the 1-800 number and got an automated system that told me the company is still waiting on materials from my doctor and hadn’t gotten any faxes yet. As it turns out, they faxed it to another office. Those are super low hanging fruit opportunities. The time spent on that – that raises my blood sugar. It’s making my diabetes worse!

Ms. Close: It’s interesting as we think about community health. Overall, I’m hearing a lot about value-based healthcare. How do you think about smashing one-size-fits-all diabetes care from a payer perspective?

Mr. Johnson: This may seem like a simple view, but sometimes it seems like it’s difficult to get supplies from payers. Some of us are limited in the number of test strips we can have on a daily basis. This doesn’t make any sense because the more tests I do, the more likely I am to avoid complications. It seems like the way payers are thinking about this is that by the time I encounter a complication, I’ll be somebody else’s problem. However, more personalized care means giving me the ability to manage my life. Overall, I’ll be a cheaper person to take care of.

Ms. Close: Now for our lightning round! What do you think is the single most important thing the audience should take away from this panel?

Mr. Johnson: This is a tremendously big thing to try and unwind and it should excite all of us working in the space.

Mr. Hernandez: That we have to take the whole person with diabetes into consideration to give personalized care.

Dr. Wright: The solution is going to come from all of us, so take action. If you have an idea start a company, start a blog, buy a sewing machine, get a 3D printer.

Ms. Close: We need to better engage payers because we need more investment. We also need to better engage healthcare providers and show gratitude for the people making the system better.

Ms. Close: Thank you SO much to everyone … there is so much brilliance on this stage and I’m so appreciative that you would share this time with us.