Justus Harris has taken an unusual path with his type 1 diabetes. He's become a Visual Artist & Technologist who creates amazing 3D sculptures of blood glucose data, as well as other Health Data Sculptures and visualizations. As weird as this sounds, he's convinced that these visual representations "could be a new norm for people, which help counteract the out-of-sight, out-of-mind problem that chronic illness and data present."
This 25-year-old pioneer works with the School of the Art Institute of Chicago (SAIC) as a West Coast Portfolio Reviewer for admissions and recently moved to Northern California to start as a 3D Printing Instructor for elementary school students in Danville, CA.
Justus also participated in Artificial Pancreas research, which fueled his creative fire. He has LOTS of interesting thoughts to share...
DM) Justus, please give us a little background on yourself. You're the product of a "patchwork family," right?
Yes. I grew up in Winston-Salem North Carolina with two supportive families: one with my mom and stepdad, and one with my dad and stepmom. I have one biological sister who is five years older than me, and four step-siblings ranging from my own age to 42. My stepsister and I actually introduced my mom and my stepdad when we were in art high school together.
And they're all creative types like you?
My mom was an image consultant for news stations across the U.S. and is now a painter. My dad had a tax auditing business and has had several businesses from mobile x-ray to a digital service for churches to organize funerals. My sister and uncle are interior designers, and my late uncle was successful screenwriter. So yes, my family is full of creative people.
How did it go down when you got diabetes?
My diagnosis experience was one of misdiagnosis and frequent trips to the doctor during the Fall of my sophomore year in high school. I was 14 and had recently come out to my parents that I was gay. My pediatrician had attributed that to my losing weight, frequent urination, having a racing heartbeat and not feeling well. Subsequently I saw a cardiologist and optometrist (my vision was becoming blurred), and made multiple repeat visits to my pediatrician without one of them ever doing a blood or urine test!
I was only diagnosed when my mother took my urine into the doctor’s office after she dropped me off at school one day and demanded they test it. Several minutes later the pediatrician ran out of the office, saying my blood sugar was in the 300’s, and I was promptly picked up from school and told I needed to pack a bag because I was going to the hospital. I spent three days at Wake Forest Baptist Medical Center and was lucky to have a great care team.
Did you embrace the diabetes or deny it, at first?
Within a month of being diagnosed a longtime type 1 diabetic friend of my dad and mom came to North Carolina from Pittsburgh. Jo Ellen Brewton, who is now a diabetes educator, mentored me during a weekend about what life could ideally be as a type 1 diabetic. I felt a sense of ownership of my condition from the moment I was diagnosed and I felt that no doctor would ever be able to take care of my own health the way I could. I was certain that there were people out there who had succeeded with type 1.
What led you to want to become a “Visual Artist & Technologist”? And what does that entail exactly?
My interest in technology comes from my use of diabetes equipment as well as my interest in sociology and human behavior, which is increasingly mediated by technology. Connected to this idea of communication through technology I believe my experience as a gay man growing up in the late 1990’s and 2000’s put me in touch with how technology is used for people to meet and communicate in otherwise socially unacceptable spaces.
I have always felt comfortable communicating through the visual arts, but as I have developed and made it my profession feel that it is the most multidisciplinary form of work and allows me to combine my interests in a way that other professions would not be tolerant of.
To be a Visual Artist & Technologist for me entails understanding the medical technology I care about and its social and experiential contexts and using my skills as an artist to improve upon and reflect on how people use technology in their life, whether to treat an illness or form relationships.
After graduating from the School of the Art Institute of Chicago I wanted to shift my focus from the intense immersion in fine arts and start to explore my interest in medicine through my experiences with diabetes. I looked online for clinical trials for type 1 diabetics and contacted the University of Illinois Chicago (UIC) and the University of Chicago. I did several smaller studies with them before doing the artificial pancreas studies as they refer you to other doctors after you have done a few with them.
You've been involved in recent Artificial Pancreas clinical trials -- did that have an impact on your outlook or your work?
Yes, the artificial pancreas research study that I did twice with the University of Chicago / Illinois Institute of Technology researchers was the most impactful. I spent 60 hours in the research hospital after the open loop day studies where they assessed my fitness and health. I realized that each member of the research team including myself had something in common, we all wanted to figure out a way to use technology to make life better for other people.
One of the technicians who had spent several nights monitoring me told me he could have applied his algorithmic skills to other technologies such as unmanned vehicles and machines. He chose the work he was doing because of the direct relationship it had to people. When he was at Sharif University in Tehran, Iran, he had, without ever meeting someone with HIV/AIDS, developed an algorithm based on European studies of patients with HIV that was able to predict the viruses behavior and successfully provide ways that patients around the world could optimize their treatment and use less medication. For me, this was artful thinking!
And you'll be part of an upcoming AP study taking place out in the real world...?
I'll be participating in the Bionic Pancreas outpatient study at Stanford University. It's interesting to me that they call it 'bionic' rather than 'artificial' yet it is the same general idea.
I will be using a system with a CGM and Tandem insulin pump that are linked, and participants are required to have a companion that they live with who is willing to be part of the study.
During the three-week period, I will wear the CGM blinded part of the time, which is perhaps one of the most intense aspects of the study. I must remain within 60 miles of Stanford and they will be asking me as well as my partner to be on call if my blood sugar becomes dangerously low or high or if the system fails. So this study actually touches on both the technology but also the social aspect of having diabetes and how other people participate in your wellness.
OK, so now to the core question: When and how did you start making 3D sculptures of blood glucose data?
During participation in the Artificial Pancreas studies at the University of Chicago, led by one of my collaborators Dr. Elizabeth Littlejohn, I was inspired by how the engineers used my health data to make concise algorithms. In response, utilizing my design and technology skills, I took this data and transformed it into 3D printed hand held objects, which are tangible calendars of health.
The sculptures simplify each month of vital metrics including insulin doses, blood glucose levels, and carbohydrates consumed, into objects with textures and shapes that vary based on changes in health felt sequentially as a timeline. This allows me to feel a sculpture and understand my condition better then I could have with 10 years of data tracking and doctor’s visits.
I learned how to 3D print specifically for this project and was fortunate enough to have the Chicago Public Library’s Maker Lab as a learning resource, which has open access 3D printers and laser cutters. Patrons using the library’s facilities were from all ranges and backgrounds and the things they made ranged from jewelry to robotic hands. This introduction to the technology made me realize that with access to the right tools many people can express tremendous creativity and can teach themselves.
Can you explain the process by which all those glucose data results get translated into these funky shapes you make?
Before I collect data for the sculptures I design a 3D dimensional object in a rendering software such as Maya or Blender, which are often used for 3D animation and 3D printing. I was intuitively drawn to spherical form that is found in nature and took that form and divided into increments that reflected the way we keep track of time -- for example the sphere represents a month, it is divided into four sections, which represent the four weeks of the month, each section has seven pieces, one for each day. Obviously this does not make a perfect calendar, so there is usually a section of the sculpture that has a few more points than the others.
The color of the sculpture represents colors I have assigned to blood glucose ranges, such as a target BG of 100-140 which would be green, a slightly-above-target range 141-170 which would be yellow, and a high range would be 171 or above. The idea is that each person who gets a Health Data Sculpture can set their own ranges.
Most of the sculptures use daily and monthly glucose averages, so at a glance they're like an A1C, but as if it were a measurement for each month. I’m currently making sculptures that show highs and lows for each day and different data sets.
I have actually customized the colors for some of the individuals I’ve made sculptures for based on what they are attracted to such as a Virginia Tech orange. The idea is that there is a level of reward for tracking data and also that it may be more enjoyable for someone to see their data where some part of it is customized to their other aesthetic and personal desires.
Wow! What does it express if the BG sculpture is round, verses ribbed, or has more or less spikes?
The sculptures are meant to be held and touched and so they are scaled to easily fit in the palm of one’s hand and the shapes and textures on them are designed to be felt with the pad of one’s finger.
I'm experimenting with several shapes, including the sphere, conical forms, and rings. These all have different affordances with how people feel them, so it's important to try multiple shapes to see what works best. All of the sculptures that are based on blood glucose are spherical because I think it has a clear cellular connotation, but other designs such as the conical form are for how many times one tested in a day or for insulin amounts. The ring was used to make it very clear which weeks and days the person was taking more insulin.
I am borrowing from the language of touch that will all inherently have. We feel pain from spikes and associate it with something sharp or high like a mountain peak and the opposite is usually true with an indentation that represents something low – with the sculptures these represent high and low blood sugar and softened bumps represent values in between.
The designs can be understood at a glance or felt sequentially for more specificity, and I think that both uses are viable. Understanding the big picture and the details are valuable at different times and different people will want to focus on varying aspects of the sculptures, just like they would with health data that is viewed in a traditional form.
What can you and other patients actually do with these sculptures?
Managing diabetes to me is like having a very high-production film set with props, lighting, and a full crew without an actual camera to make the movie and communicate the story. The struggle for many patients -- myself included -- is the lack of a tool to put the pieces of my treatment together in a form where it is easy to understand and remember the patterns and themes in my health.
Remembering my diabetes health has always been challenging for me, whether it was recalling the last six months, the last month, or even the last week – it all blurs together. I have found a solution for myself to make my health record distinct and understandable at glance where I can not only see and feel my health but also recognize my own patterns in the palm of my hand.
The average person, unless they are a data scientist or work with numbers for a living, can barely make sense of the charts that are supposed to inform us about our health. It is amazing for me to see people understanding their health all of a sudden in totally visceral form, where they quickly recognize for example that every Friday last month, they had high blood sugar, which they know through the spikes on the sculpture and intuitively compare and contrast different days of the month.
Sounds like you actually use these 3D sculptures as a form of diabetes data logbook...
Correct. I now have a collection of Health Data Sculptures and so instead of comparing logs of data I can compare my sculptures. It is my own version of an A1C, which I keep on my desk and can see and reflect on every day. At their root Health Data Sculptures make understanding health possible without the burden of the tools of the past and are simple enough that anyone can understand. I believe this could be a new norm for people, which helps counteract the out-of-sight, out-of-mind problem that chronic illness and data present.
As an artist I naturally think of the most visual way to interpret data and the world. Diabetes changes over time and along with easier tools to measure health that others are creating I am making my own system for an easier way to recognize the distinct patterns of my health, and this is something I believe others will be able to do with my work as well.
Do you envision doctors using these sculptures to teach patients, or other clinical uses?
I absolutely see the sculptures as an educational tool. They can convey what happens inside of the body with blood glucose and other health metrics such as amount of insulin taken without someone having to understand the anatomy of the body and the varying conventions that are used in blood glucose measurements and an A1C.
I'm excited to begin working with children who have type 1, those with visual impairment and those who have a hard time understanding complicated data and numbers, who could instantly have a tool that shows them their health.
Helping children have access to understanding their health (since so many people develop diabetes at a very young age) is something I see a huge potential for. I’m excited about offering them a tool to take ownership and find empowerment in knowing their body and health as soon as possible. I also had a chance to share my work with those with visual impairment recently and it provides a tactile way to convey information that could be combined with brail but which actually works with the sense of touch outside of written language.
Dr. Aaron Neinstein recently wrote an article on my work for Medscape in relation to health literacy saying, “This approach could even become a way for someone with low health literacy to rapidly understand whether his diabetes is in good or poor control, beyond what glycated hemoglobin conveys.”
In particular I think the Health Data Sculptures could be useful at a doctor's appointment, which are often only 30 minutes or less and where trying to remember or recall health information is difficult. Patients could now have a simple tool to convey their health to their doctor, who would have access to the same data used to create the sculpture. With this, the conversation and strategies they discuss will be better.
What prompted your recent move from Chicago to Oakland, CA, and what plans do you have for your sculpture work on the West Coast?
My partner, who is screenwriter and filmmaker, and I moved from Chicago to Oakland because we wanted to explore a different environment and new opportunities for our careers. I love Chicago but felt that the SF Bay area would be more supportive of my work as it is a center for innovation in health and technology.
My goal while I’m in Northern California, which I would like to be for several years at least, is to opertationalize my work with 3D printing and Health Data Sculptures in collaboration with a company and individuals who share a passion for innovation that helps make people’s life easier. I am starting to teach 3D printing to children and have volunteered with (diabetes data platform developer) Tidepool here, and both experiences have helped me think about my own work and how it could be used in the world.
You also lived in Berlin for a year in 2012, correct? What was it like being diabetic there? Any surprises?
Being a diabetic in Berlin was challenging in that I had supplies mailed in from the United States, although I did have German healthcare. The diet there has a great deal of bread and I ended up eating out more. What I also realized is that it seemed people were not as accustomed to the technologies I used with my insulin pump and CGM and even with my iPhone, which was not the norm there at the time.
I have a memory of losing my OmniPod PDM in the park and going to the lost and found and speaking broken German to the park staff who then pulled out a bin full of lost diabetes supplies – none of which was mine! It made me feel better to know I’m not the only one who has a hard time with this.
We're looking forward to hosting you at the upcoming DiabetesMine D-Data ExChange. What do you hope to take away from that event?
I am excited to hear about the innovations that a spectrum of people from the device makers, to the software and platform designers will be sharing. It is so important to bring people from every possible angle of diabetes together to express different perspectives and opinions.
For me this is a chance to meet and be able to learn and speak directly to the people whose work and devices have changed my life and which I use every day. I want to represent the power of design and creative thinking in helping make life with diabetes easier and there could not be a more relevant group of people to whom I can present my work and beliefs. I am hoping to find new collaborators and relationships so that I can push the boundaries of my own work and stay connected with those shaping the future of diabetes healthcare.
We hope so too! The event is all about achieving interoperability and open data systems. Is that important to you as well?
Our health data is one of the most valuable sets of information we have and I believe the more accessible it becomes with companies like Tidepool who believe you data is yours, the better. But more individualized methods for understanding this data are needed.
The language we use to talk about health data now is akin to computers before Graphic User Interfaces – you have to do a tremendous amount of work to make sense of it, and it doesn’t reflect the way we interact with the rest of the world through visual and tactile communication. As data storage, wearable monitoring technologies, and production methods like 3D printing become cheaper and more sophisticated, there is no reason to remain bound by traditional numerical representations that look more like a stock exchange printout than anything the average patient wants to spend time with.
What do you see as the future of Health Data Sculptures?
Health Data Sculptures leverage existing technologies to transform the massive amounts of data that people have to deal with into a simple language they can understand. I believe these sculptures will be used on a broad scale by those who monitor their health for many reasons, be it fitness, blood pressure control, or for chronic including conditions outside of diabetes. The sculptures don’t necessarily need to be printed but when made tangible but can also be viewed in 3D.
I believe they are a powerful motivating tool, as they make the history of your health undeniable and distinct, and counteract that out-of-sight, out-of-mind attitude that I believe is as much a design failure in the medical world as it is a patient problem.
How will these sculptures become available to the masses? Can anyone make or obtain them?
I have already begun to prototype the sculptures with other diabetics and the next step is to automate this process so that there are various templates that anyone could use to upload their data and see it as a health data sculpture, which could be printed at a clinic or anywhere with a 3D printer.
Many components of the sculptures could change with the advancements of technologies in the future, but the sculptures are essentially made for the only consistent part of the system: the human user. People have always used art and design to understand, memorize and communicate about their lives. That is a uniquely human characteristic. And I believe that we're entering a period where there is more opportunity than ever for creativity and accessibility via advanced communication, and this will be a huge benefit for our own health and for the world.
Justus, you really are a pioneer here, or as we've phrased it, 'The King of 3D BG Sculptures'...
Any new technology must be imagined and executed in its first form, which I have done. The first insulin pump, the first CGM, and the first computers were all used by a few individuals/institutions and then became accessible to a wider group of people. 3D printing, wearable monitoring technology, and data storage are hitting their stride and the process for making health data sculptures will be easier not just with each year of innovation, but with each month of innovation! I plan on staying on my toes and responding to the amazing work other people are doing that will no doubt lead to unexpected developments in my own work as well.
Awesome Justus. Just awesome.