My me

Medical data is oddly impersonal considering its personal origins. How can people engage with, internalize and process medical data (or any data…) if it does not relate to them in a personalized way? How can the data be actionable or meaningful if we engage with it in binary contexts of numbers that are good or bad and devices that turn on and off.

My me is a platform to create a personal mnemonic for blood sugar data. By personalizing the visualization one engages with the data in a creative and expressive way. A bespoke and emotional engagement with blood sugar data is a critical aspect of making data ‘actionable’.

The whole set

During research with 6 people with T1D (myself included) it became clear that there was a hyper focus on blood sugar data. The blood sugar number is often taken as a judgment and not as information to act on.

“So a sensor is really good, it takes all this data, but it messed up thinking… I could see that when I ate I had spikes in my sugar, it made me be really cautious about what I ate and I stopped eating when I saw any spike, and stopped following a meal schedule and I would eat whenever it happened to be low enough that it wouldn’t cause to much of a spike. I lost too much weight. I started loosing insertion sites for the sensor so I stopped using it. I lost my regular pump sites as well. It started a vicious cycle because I would be high more often and stopped eating even more.” Daniella

Data alone means nothing. It becomes informational when it is in context. The experience (emotional, insulin, activity, weight, time, etc) around the blood sugar number is needed to feel ownership and agency over the data in order to make it powerful and meaningful to the person whose data it is.

“The mere fact of having a reliable feedback mechanism in the form of the Dexcom monitor was not enough to effect an improvement. Months passed, and I only grew more and more frustrated with my seeming inability to control my post-meal blood glucose.” John

We don’t need more technology – we need better systems/methods of using the technology we have. We are further along at understanding machines than we are at understanding ourselves. We can’t change our behavior through data or through devices if we don’t understand how we internalize the information they provide us with.

Behavior change is dependent upon relationships and connections – with social networks, family and peers but also with the ever increasing and more available personal data and the technology that we interact with. To understand behavior we must first understand the relationships we have on an emotional, psychological and physical level.

Behavior change doesn’t happen over a few weeks. People don’t usually change dramatically. The kind that lasts is when it is integrated, when it becomes not just a routine, but also a part of ones character. True behavior change is a transformation, a lifestyle or an identity shift. It happens little by little.

User Research Probes

Vital Device : a machine or tool that one is dependent on to live.

Research in the concept of Vital Devices through three variations of a probe

Form – What could this be, have on it? What shape feels good?
Care – How do you care for this? What does it need?
Relationship – What does it give to you?

Vital Devices

Insights:

1. There is a physical and behavioral impact of the aesthetics of the device (see Harry Harlow)

2. The person who is dependent is secure (security also means ability to explore and learn) when it knows that the device will not break.

I fear the nurses making changes I don’t control. I hate the tests where they can noticeably change the heart-rate, wired to a machine like a marionette puppet. I wish I could control or have a more intimate relationship with my machine. Instead I sometimes feel out of control and release myself to the fact that I hope the machine knows best.” Daniella

3. There is a cultural obsession with autonomy where inter-dependence and dependence are undesirable. (see Abler)

 “The pump doesn’t feel like me, its accepted that it is me, but that’s the thing, if I get sick of diabetes I get sick of me.” Shawn

Non-Number: Painting as a tool to create images that represent individual experiences of blood sugar numbers.

Non-number

Insights :

1. Numbers are not stagnant, they are one aspect of a whole experience.

2. Numbers mean nothing without context. A 200 for 40 minutes is very different than a 200 for 5 hours. A 60 and going up is very different than a 60 going down.

3. Creative expression is a powerful way to understand experience and feel ownership of experience.

Desk and Market research

the first insulin pump, Harry Harlow, ipod compared to insulin pump, IBgStar

the first insulin pump, Harry Harlow, ipod compared to insulin pump, IBgStar

Process sketches 

Developing non-numbers into interface

Developing non-numbers into interface

STUDENTS