At the onset of the diabetes management project, our team had a textbook understanding of diabetes, but we had no insight into the experience of living with a chronic condition like diabetes on a daily basis. We had a hunch that, like most products and services developed today, the current products diabetics use to manage their condition are designed to accommodate technology and business constraints—with very little understanding or empathy towards the human experience.
The objective of our research was to gain that perspective, to understand and empathize with the daily experience of living with diabetes, and then design a product that met their needs and could improve their lives. Who better to talk to than diabetics themselves? We spoke with a total of ten people; a combination of diabetics living with type 1 or type 2 diabetes as well as two diabetic educators. We conducted in-depth, 2-3 hour interviews—some in-home ethnographies, some in-person interviews at local restaurants or our office. At the end of two weeks, we compiled our findings in this presentation. Three of the key findings are below.
The Emotional Impact of Numbers
We knew diet was a key concern for diabetics, but meeting with our research participants helped us understand the additional issues diabetics must consider with regards to food. When I look at an ice cream cone or a cookie, I think about how good it will taste or how I deserve it because I walked a couple blocks. Diabetics have a host of additional concerns: they must calculate the number of carbohydrates a given food contains, translate how much insulin their body will need to process the sugar, anticipate the amount of exercise they may do and adjust insulin doses accordingly. They also have to worry about how eating that ice cream cone or cookie could impact their blood sugar levels for the next 2-48 hours and consider if it’s really worth it.
In addition to carbohydrate counting, diabetics have to monitor their glucose levels. Six to 10 times a day, diabetics must test their glucose level with the goal of keeping it between 80 and 140. The emotional impact of these numbers is significant. One participant, Eileen, shared that high or low numbers can ruin her day. “I watch my diet like a hawk, I exercise, so when my numbers are high or low I get really pissed. I feel like I am doing everything I am supposed to do, so why is this happening. It can be really frustrating.” For many, the numbers can feel like a judgment: almost like a letter grade. While the numbers are a good guide, they aren’t always a reflection of how well a person is doing. Sometimes, diabetics have a bad day, despite great efforts, their body just goes high or low. Unfortunately, the emotional impact of the numbers can be enormously discouraging.
All diabetics really have to guide them is numbers—and numbers can lie. The reading from a glucose meter is the result from a single moment in time. Amy Tenderich, the woman who inspired this project, described the process of testing glucose levels in her book Know Your Numbers, Outlive Your Diabetes. Amy describes the process as being akin to driving a car blindfolded and only being allowed to remove it for a few seconds every few minutes. You have a sense of where you are going, but you could get far down the wrong path and not know it. A diabetic could be crashing, but their monitor could give a ‘normal’ reading because current glucose monitors do not provide data over time.
So Much Stuff… and So Many Needles
In addition to the typical “essential stuff” that people carry around like a wallet, a cell phone and keys, diabetics have a host of additional items. Some diabetics carry around: Glucose monitor, test strips, lancet, extra lancet needles, extra insulin, back-up syringes, and glucose tablets. One participant, Alice, pointed to her big black bag and said, “Sometimes I think it would be nice to carry around a tiny stylish purse, but that just isn’t possible for me.”
Needles are also an issue. Our team was blown away by the number of times a type 1 diabetic has to contend with needles in a given day. Between monitoring blood glucose levels and injecting insulin, most type 1 diabetics have to poke themselves with a needle 10-14 times a day. When asked, all participants had a similar response: “You get used to it.” Perhaps. I couldn’t help but think that response is just something diabetics say to deal with something that is really difficult to explain to someone who isn’t diabetic. I imagine that poking yourself with a needle isn’t something you get used to, but something you adapt to in order to stay alive.
Several of the type 1 diabetics we spoke with used insulin pumps. These “pumpers” love the functionality of their pumps: the control they provide and the positive impact the devices have on managing their condition. While people love what their pumps do, they don’t love the pumps themselves. Pumps are an awkward size and people don’t always know where to put them. Most people use a pocket—which requires whatever they wear to have a pocket. Women sometimes put them in their bra but that makes it difficult to read and control discreetly. Tubing on pumps often gets caught on door handles and are awkward in social situations when the tubing is visible. Most pumps are not waterproof, which makes exercise and showering a challenge.
The most notable research finding regarding pumps was that they are just plain ugly. Pumps are big, and clunky and the form factor is not terribly human. When you think about the beautiful product design of portable consumer electronics such as mobile phones and MP3 players, it’s truly sad that diabetics have nothing more to choose from than hardware design that is reminiscent of an 80’s pager. Pumps could be better… a lot better.
Motivation and Sheer Determination
We soon realized that quite possibly the most frustrating part of living with diabetes is that there is no break from it, especially for type 1 diabetics. The analogy we came up with was that living with diabetes is like having a newborn infant for your entire life. It requires constant attention and vigilance. Keeping motivated is an essential part of living with diabetes. Nancy, a diabetic educator we spoke with wears a yellow bracelet that could easily be mistaken for a Lance Armstrong “Live Strong” bracelet. Instead it says, “Be Your Own Cause.” Nancy has worked with thousands of diabetics in the 25 years she’s been an educator and believes that motivation and sheer determination are the main things that keeps diabetics alive and healthy. “It’s very difficult for someone who doesn’t have diabetes to understand. There’s no vacation from it, it never stops.”
Admittedly, this was emotionally challenging research for the team to conduct. At the onset, we had an understanding of diabetes, but we had no understanding of the daily experience of living with the condition. Meeting with people and hearing their stories humanized diabetes for us—it helped us understand the profound impact diabetes has on people’s daily lives and how the experience could be improved. It forced us to realize aspects of our own health that we simply take for granted. More importantly, meeting these ten diabetics and diabetic educators inspired us. The folks we met wake up everyday and deal with a condition that is frankly not very fun to live with. They do it so they can live a life with the same dreams and aspirations any person has: run a marathon, work at a job they enjoy, have a baby, see their kids grow up, or grow old with the person they love. The only difference is that diabetics take on the added responsibility of keeping themselves alive every day. Our key research finding is that diabetics are some of the bravest people out there and they deserve better tools than what they have now.