Welcome to the fifth in our series of interviews with the 10 winners of our DiabetesMine Patient Voices Contest, who were unvieled in June. Today, we're chatting with Sara Krugman, a 25-year-old Massachusetts woman diagnosed with type 1 as a young child. She's a graphic designer with a unique perspective on what it means to be a "patient" and an "advocate."
In her hand-animated contest video, Sara talks about the people, institutions and numbers she depends on to help her manage her diabetes. She dreams of improved connectivity between them all! Today, we're happy to share some detail about Sara's life and advocacy goals, and what she's hoping for from the DiabetesMine Innovation Summit at Stanford University in November:
DM) Sara, you were very young at diagnosis. How did your life with diabetes begin?
SK) I was diagnosed when I was 5, at the Joslin Diabetes Clinic in Boston. I remember looking in the refrigerator and only wanting water, I had all the symptoms of being thirsty, peeing a lot, etc. My family went on vacation for a week or so, and when we got back I asked my mom if we were going to go to the doctor now. So we went, and I was diagnosed pretty fast. It was especially hard on my mom...
I remember her crying in the car leaving the doctor's office, and me telling her that we would figure it out, it would be okay. I think at that moment I put on a bit of a fighting attitude, like 'I can handle this' and 'It's not that big of a deal.' I remember that the doctor told us that there would be a cure in five years, which is not a good message to give, because every five years that's what they said as I was growing up. I think hearing that led me to believe that I didn't have to take diabetes seriously, and that has made it harder to be responsible. Now, with a lot of work, I have more of an acceptance, and am living with the mantra of 'I can do this because I am strong.'
Did the diabetes have an impact on what you imagined yourself doing with your life?
I think so. When I was in the hospital there was an activity in the gym with all the other kids. We got T-shirts and puffy paint to decorate our own shirts. This was really important to me, and I think I developed creativity as a tool to process my experiences. I also vividly remember the process of self-reflection. I wanted to draw myself, do a self-portrait, and I tested a few things out. I drew a planet and stars (I wanted to be an astronaut at the time), and I drew my face three different times. I still have the shirt, and it is really amazing. I feel very strongly that creativity is an incredible tool, a fabulous and crucial way for people to learn about themselves and the world, and how to manage the hard things in life. It is my strongest weapon and I developed it at a traumatic time in my life. Creativity allows self-expression, a way for one to put something of themselves outside of themselves and see how it functions. When you make something you can ask questions like, 'Do I like what this says?' and 'Is it saying what I want to say?' That process helps one develop empathy, integrity and responsibility.
So your hospital experience as a child was a positive one?
Not exactly. At some point in the hospital my heart rate was very high, so the doctors attached sensors to me to figure out what was wrong. Turns out I was having an anxiety attack (at the age of 5!). What I make of that experience now is that I was scared of the environment I was in - the sterility of the setting and the severity of the experience. Although I have done a lot of work to transform this feeling, it has stayed with me in many ways. It motivates my work as an artist and as a designer. It is this basic tenant, the sterility and harshness of the medical environment, that I wish to have an impact on for others and for myself in the future.
On the flip side of that, I remember the brightly colored chairs in the hallway outside of the room I stayed in. I remember my kindergarten teacher coming in and leaving me a book that everyone in my class made to wish me well. I remember the nurses being warm, I remember the feeling of when they came to me in the hospital room to check on me. Some of them had diabetes, too, and they were okay, they were role models. I remember one of their warm and soft hands on my forehead. I remember the peanut butter crackers and smiles I would get for having a low blood sugar.
There were a lot of things that I look back on, from my early experiences with diabetes, that have shaped me pretty deeply as a person; my sensitivity and creativity, my the appreciation for human warmth and an opposition to sterile, mechanized and technological methods of care.
Do you think of yourself as a patient advocate who uses creativity as a communication channel?
I don't think of myself as a patient advocate; my role is as a designer and communicator. There are a lot of problems with the language we have to talk about health.
A major part of the definition for the word 'advocate' is doing something on behalf of another. My work is driven by my own need, and I work from my own experience. It also is beneficial to others and I don't think I would do it otherwise. I was making art before shifting to design, and I was frustrated with that process because it seemed clear that it was hugely helpful for me, but it did not benefit others directly. The difference is self-involvement; it's either take someone else's need and do something for them, or start from personal need to do something that affects you and others. I lean towards the latter.
The definition of the word patient is 'a person who is awaiting or under medical care or treatment' or 'one that is acted upon.' There are a few words in this definition that I don't want to think of myself as: Awaiting because it is passive, under because it is pejorative and acted upon because it implies a passive and complacent state.
Right now, we don't have better words, so yes, we have to use what we've got. But we can work on coming up with better ones, ones that empower us.
Why did you focus on the concept of connectivity in your video entry?
Because it's missing. I can track, record and connect so many things in my life through the technology that is available. Those include: my spending habits, music preferences, movie watching habits, weight, sleep and bank account. While all of these things are useful, the most important pieces of my life to keep connected are the parts that have to do with diabetes. We have all of the technologies and smarts to put them together and because of the way our infrastructure has been, we haven't yet developed sufficient tools for this in health care. But, we are starting to, collectively. I am working on a product that does this, with others who have diabetes and who have the skills to implement these ideas. Connection between people enables us to work together to connect ideas, devices, products, systems, services, etc. I see the idea of connection as a basic and powerful thing to work for.
As a contest winner, you got a brand new iBGStar meter that plugs into the iPhone. Any initial thoughts on using that product?
I'm grateful that Sanofi has made something that I hope will pressure other companies to create a new design standard for personal medical devices. I'm intrigued by the pure fact that the iBGStar looks like a consumer device, that it plugs into my iPhone, that it has an interface and graphics that look and feel good, that it's the first of its kind... a blood sugar meter that is actually sexy.
The biggest accomplishment of the iBGStar is its aesthetic — its feel, its shine, the video that brings you through the blood stream after each test. The aesthetics of medical devices matter a lot. The information display where the data is shown is amazing but still not fabulous. I was talking on the phone the other day and hadn't taken the iBGStar or strip out of my phone, and it was close to my mouth — this felt strange. I'm not sure that there is a solution to that, as it is a byproduct of having one device (iPhone) that does everything. I think there are a variety user experience problems with the manual entry points (for notes, and also a place to add carbohydrates and insulin). I suppose I'm extra critical because I am an interaction designer, so perhaps my perspective is not shared.
I am excited about connecting, about talking with others about these things and being heard. I have been thinking and working on this stuff for a long time and I am starting to implement some of my ideas in ways that will make an impact for others. Going to the Summit will be motivating, exciting, and propelling. I am excited to get deeper into this community and work together to make our lives with diabetes better.
What would you most like to see the Summit achieve, and what do you hope to bring to the table yourself?
In many ways I don't know what to expect. I would like to see and be a part of a genuine effort to make better tools, communities and services for people living with diabetes. I hope to bring design thinking and process to the Summit.
How do you think this might affect your life with diabetes going forward?
I think it will motivate me further. I think I will meet inspiring people who are living with diabetes. I think and hope to learn more about what other people are doing, to learn more tricks of the trade for living with diabetes. I also hope to develop meaningful and lasting connections.
Thanks, Sara! We appreciate your design-driven approach and look forward to meeting you IRL.