What Does Patient Centricity Mean for Diabetes Research?
In honor of National Diabetes Month, we sat down with Scott Johnson, diabetes advocate and founder of the popular blog Scott's Diabetes. He's been sharing his personal experience and connecting with the diabetes community since he started one of the web's first diabetes blogs back in 2004. Today, he's the Patient Engagement Manager at diabetes management company mySugr. We chatted about what the concept of "patient centricity," a popular focus in pharma, means for diabetes patients – and how we can involve more patient voices in the conversation.
Lindsey Wahlstrom-Edwards, Antidote: We've been working together for a while now, ever since we shared a Diet Coke and coffee together in 2015. At the time, Antidote was just launching our clinical trials matching technology and we were looking for experts to weigh-in on the product. Everyone we spoke with said: "You should meet Scott Johnson". So, in many ways, your voice has been the respected patient perspective on type 1 diabetes since my entree into this world. How did you get started in type 1 diabetes advocacy?
Scott Johnson: I got started in advocacy by basically needing a place to tell my own story. There's something really powerful about the exercise of taking very vague thoughts and emotions about living with diabetes and processing them through the written word. So I started blogging about my perspective of living with diabetes, and my thoughts and feelings and experiences. I started that in late 2004, which was when a lot of the diabetes online space, the blogging aspect anyway, was really getting going.
Antidote: Since we met, your voice has been amplified through engagements with Diabetes Hands Foundation/TuDiabetes, mySugr, and many more organizations. Can you explain how your work from advocate morphed into more formalized roles at established organizations?
SJ: Just like many other things in life, I was able to start building relationships and growing those relationships, getting involved in more projects, bit by bit, and taking advantage of opportunities to learn and grow myself. It's a really tremendous way to learn from many more people, hear many stories and share my story and my voice a bit. I only wish that I had much more time to continue on my Scott's Diabetes blog. That will always be a platform for me and something I will never officially retire. It's a place for me to go when I need a place to just kind of get things off my chest and heart and mind about diabetes.
Antidote: A few years ago when we started our conversations, "patient centricity" was the buzzword bandied about at conferences and industry gatherings. And it still is. What does "patient centricity" mean in diabetes research and treatment development, and do you think we've made headway in the last ten years?
SJ: In many ways, patient centricity is where it all starts. The whole reason anyone is doing anything is to fix a problem or cure something, or ease the burden of whatever people living with diabetes are dealing with. So in some ways it's kind of sad that we had to invent patient centricity; it should automatically be the heart of all the conversations.
Antidote: When you imagine a perfect researcher-patient collaboration for type 1 diabetes, what does that look like?
SJ: It looks like having as many people living with diabetes as possible involved right from the very start, and them sharing their voice and perspective with the people who are working on the solutions. Because I think that especially with something like diabetes, it's a very very individual condition. We all are kind of dealing with the same thing, which is blood sugar management, but there are so many different ways to go about it, and different perspectives on those problems. I think we need a much deeper understanding of what the core problems are. Many times I think that those of us living with diabetes have some inklings and feelings, but we're so close to the daily management [of the disease] that it's hard for us to really clearly state the core problem. So bringing a bunch of people together, along with those working on the solutions, from the earliest point possible can change the game. And you cut out a lot of inefficiencies along the way. You avoid going down the wrong path if you can get started on the right path earlier.
Antidote: So you're talking more about patient voice in the design of trials, and thinking about what solutions are needed?
SJ: Yeah, absolutely. I think there's a lot of noise in the diabetes space, partly because there's this huge market. So I think there are a lot of companies that are creating things that aren't really necessary. There are a lot of wasted time and energy and money and ideas, and companies having to shift gears and course correct much farther along than what they would like. I think that part of that can be because there's not enough patient voice involved in the ideation and trial design, and the very very early phases.
Antidote: What comes next in patient engagement for diabetes?
SJ: I think that the power of story is super important. It has been forever, right? The power of story of living well with diabetes, and what is working well for us and what's not working well for us. The more perspectives that companies and industries and businesses can get from people with diabetes, the better off they'll be. I think there's a need to really broaden the view of the people that are being looked at when companies say I want to pull together a group of people I can ask questions of. It really needs to be a broad, broad audience. Those of us who are in the diabetes social media space, and working in the diabetes industry, we are not the average diabetes population. There's a whole different story out there. It's one that I can't tell because it's not my story. So we need to get more people involved.