In early August 2017, my friend and collaborator Kaki — acclaimed musician, composer and guitar player — woke up her almost three year old daughter, Cooper, in their house in Brooklyn and saw that she had blood in her mouth. She composedly asked her to stick out her tongue, and on it was a lesion the size of a dime.
“Heart racing, panicking on the inside, I calmly packed her up and went straight to her pediatrician, who send us directly to the ER. After a blood test she was diagnosed with a condition called Idiopathic Thrombocytopenic Purpura, or ITP, an auto-immune disease where her body attacks her platelets, a crucial part of blood clotting. She was getting spontaneous bruises and burst blood vessels called petechiae all over her body. The following weeks were a terrifying spree of platelet transfusions, courses of steroids, blood tests, and abject terror as we watched her platelet levels rise and fall.” — reports Kaki.
When I learned about what she and her family were going through, I wanted to find a way to support or at least to make clarity and sense to what was happening in their lives.
I am a data visualization designer and artist.
With my research and practice I use data as a tool to better understand the human nature, and data visualization as my expressive medium to narrate what I discover.
Through my work, I thought, I could try to help her process and communicate her emotions: the feelings anyone of us experience when coping with our own illness or that of a beloved one.
At that point, Kaki and I had been collaborating for a while. We started working together one year before, when design guru John Maeda enrolled us for an unusual project: creating the brand identity for the limited edition of Hennessy V.S.O.P. Privilége, celebrating the 200 years of the prestigious cognac, where we mixed our diverse set of skills to create a visual imaginary made of music and data visualization.
Kaki and I fell in love with each other’s work immediately, and decided to keep on exploring together.
Early in 2017 we guided an audience of 2,000 people in the Opera Theater in Cape Town on how to “see” music through a laborious dissection and representation of what Kaki does with her hands on her guitar as she plays, where both the song and the visual were informed by personal data collections from our lives.
This time, in this particular moments of Kaki’s life, we felt the need to go deeper. We used our arts combined to take back some control over this frightening episode: illuminating the most humane dimensions of what we so coldly call data, and making a cathartic beauty out of this disturbing time.
ITP is a very visual disease, it presents with visual symptoms of abnormally large bruising and petechiae, and as Kaki explains: “The doctor’s directive to us was to watch her skin for any significant changes. Since I had been working with Giorgia I had learned to do personal data collection, so I began to write down what I was seeing on Cooper’s skin, what activities we did that day, what treatments she had and what her reading were, as well as how I was feeling. My fear, stress, my hope. My thoughts and feelings.”
We therefore started daily observations — juxtaposing clinical inputs from Cooper’s lab tests to much softer data from Kaki’s life — to channel stress and anxiety into a semblance of control through a meditative action that could help Kaki and her wife make sense of what was happening.
These unique 4 months of their lives, ultimately became a musical score and a data visualization, but probably not exactly the type of representation someone would normally expect from clinical data.
As I was reading Kaki’s records, I was overwhelmed with feelings. I asked myself: can a data visualization evoke empathy and activate us also at an emotional level, and not only at a cognitive one? Can looking at a data visualization make you feel part of a story of a human’s life?
To begin this exploration I structured a fluid timeline, where each one of the white elements indicates a new day. Days are grouped in sections: the moments in between Cooper’s admissions to the hospital to have her blood checked, the days that felt more crucial in Kaki’s and her family’s experience.
Thus, in the visualization, a new group of days starts when a lab test was performed.
The platelet counts from the results are represented by the red dots at the beginning of the group. (The normal range of platelets in the blood is 150–400. At the beginning of these time period, you can read counts of 1, 7, 30, numbers that have a powerful meaning and that are connected to deep sentiments.)
Then I incorporated Cooper’s skin as observed by Kaki daily, testing how to recall the disease visually with the intensity and spread of different types of brushes and drawing materials.
The intensity of bruises on her body is represented by the purple and green splotches (the bigger, more intense and more colorful, the wider and harsh the bruises).
The amount of petechiae (small purple spots caused by bleeding into the skin) are visualized with tiny pink dots on each day (the denser the area, the more present the spots on Cooper’s skin). When Cooper was taking steroids, grey brushes strokes are on top of the day. If Cooper had some incidents that caused her skin to worsen, colored pencils strokes are added.
Kaki tours a lot, and she was always feeling very stressed to be far from home in this particular period of time. In the visual, a black dot is added to the day when Kaki was away.
In these dark months there have also been positive times that I represented through bright yellow spots that cheer up the visual.
Lastly, Kaki also kept track of her level of hope and fear for the day on a scale on 1 to 10, that I visualized through these floating lines framing the day.
All around I hand-wrote Kaki’s personal notes for each day, where we highlighted the most defining words.
The visual is only half of the artwork: Kaki composed a song based on her data collection that accompanies the artwork.
“The song has 120 measures in 3/4 time, covering the 120 days that I collected data. There are elements that you will hear that reference the amount of petechiae on her skin, my changing mood... And the main guitar part is a musical map of the bruises on her skin, changing, bleeding into each other.” — Kaki
And here you can experience the full piece:
As you can probably see, this is isn’t by any means a scientific representation of data. Still, we believe it paints an accurate sensorial picture of this personal journey.
There are so many ways to look at a pathology, and there is so much information that is vital to help the healing journey of a patient and of a family, and that can inform the decision making process. But sometimes we completely forget these softer, more intimate, even fuzzy type of data.
Data are never only what we see at a first glance, they are never only the hardcore numbers. They always come with an often overlooked set of more fluid and nuanced information that therefore requires new forms of representations to be captured fully.
“This episode of my life was a total nightmare. I lived and breathed ITP and Cooper’s platelet count controlled my life. It was only through the data collection that I was able to calm myself down, see the parallels between Cooper’s bruises and my stress level, and stop letting the stress and fear getting in the way of being a healthy person and a good parent. I was able to appreciate moments of joy and happiness, unclouded by fears and worries. And now I can take back some control over this episode by collaborating on this visualization and musicalization of the most frightening months of my life.” — Kaki
We are not implying that what you’ve seen can lead to any scientific breakthroughs, it is not the point of our research. We believe though, that radical experimentations of this kind, artistic experimentation of this kind, can be a starting point to reconsider what we define as data in the first place.
In my recent TED talk, I explained what I call DATA HUMANISM, that is my attempt to define the focus of my research, and to understand what my personal contribution to the field could be.
Working with Kaki through this journey made me realize even clearly that — to make data faithfully representative of our human nature — we need to start designing ways to include empathy, imperfection and human qualities in how we collect, process, interpret and display them.
We do see a future where, instead of using data only to become more efficient, we will all use data to become more human.
(1) We premiered the project at the STIR Experience Lab in San Francisco, an inspiring conference attended by a selected group of visionary healthcare executives, where Kaki played live in front of the audience. At the moment we are looking for potential collaborations with healthcare institutions to turn this exploratory approach into actual innovations to empower patients and families when dealing with a disease.
(2) “And For those of you who are wondering, Cooper’s last reading was 59. She has been out of the low danger zone for long enough that her doctor believes she will grow out of this condition entirely. Here’s a photo of her with her baby brother.” — Kaki
(3) P.S. A HUGE Thank you to Kaki King for being my friend and amazing collaborator, for being a brave explorer and an infinitely creative mind, and for being willing to share with me and you all this very personal journey.
(4) Another big thank you to Andrea Bax Bassan for the great work on the video animation!