Visualizing symptoms, sensations and stories
Trends in how people picture their health
Imagine a loved one is experiencing extreme pain. Beyond body language, how do they talk about what’s happening? When they tell you how they feel, the language often becomes visual and visceral. With pain, metaphors abound:
Like a hot poker
We’ve heard these terms since we were children, spoken by the adults around us to describe their lower back pain, their sciatica, their plantar fasciitis. Which makes one wonder — if we have this somewhat shared vocabulary for expressing pain and symptoms, could there be a shared ‘visual’ vocabulary for symptoms and sensations?
To the above end, I recently co-facilitated a health visualization workshop at the Stanford Medicine X conference along with Dr. Chethan Sarabu, a pediatrician who, like me, has experimented with incorporating visuals into doctor visits. (Here’s an article we wrote last spring that gives our back stories, his as a doctor-designer and mine as a patient-designer: Show, don’t tell: how visuals improve healthcare visits.)
Our workshop was called “Co-creating visual conversations: using imagery to augment patient visits.” The diverse group of attendees included about 25 patients, designers, healthcare practitioners, and an assortment of other healthcare folks. We led them through some exercises intended to visualize a memorable ER visit, using a timeline and ‘symptom map,’ along with wellness information like diet and physical activity.
Of these activities, the ER visit drawings were especially interesting (dare I say exciting?) Trends and themes emerged across the different images, and these are outlined below.
Visualizing what happened on a timeline
The exercise: Recall a memorable ER visit. Create a timeline of what happened leading up to the visit, along with a drawing of how your body was feeling. The purpose is to help medical staff understand what happened. Then share your drawings with a partner.
People had different approaches to creating the pre-ER timeline; they used a mixture of words and imagery, depending on the person. We’d left this activity free-form on purpose to see what they’d do. Check out the variance in these examples:
Timelines using just words
Just words paired with a line graph
What can we learn? The timelines created with words take a little more time to visually absorb, but they stand alone well after the fact. (Even though I didn’t hear these stories firsthand, I could understand what happened when I looked at them later.) The line graph adds a nice visual component to supplement what the words are saying.
Timelines using mostly pictures
What can we learn? Timelines created with mostly pictures can communicate a lot, though they leave more room for interpretation and so would require an in-person walk-through to make sure the finer points are understood.
Pictures and words
What can we learn? A good balance of pictures and words can make a story engaging and also help it stand alone after the fact.
More graphical representations of ‘how I was feeling’
Many of the timelines used a graph or ‘emoji face’ to indicate how they were doing at a given point in time.
What can we learn? People think graphically about their wellbeing, but their mental models differ — some used a line graph with higher=feeling good and lower=feeling bad, while others used an area graph with higher/more area=feeling worse and lower/less area=feeling better. (Yes this is a confusing sentence — refer to the images above to see what I mean.) Other people wanted to simply use facial expressions to reflect how they were feeling.
And the kitchen sink
As quick, hand-drawn timelines, many of these required both a verbal and visual component to be well-understood. It would take more work and time to create something that could stand alone and be legible after the fact. But in this ER visit scenario, a quick and scrappy timeline might serve the purpose just fine.
Drawing symptoms on a body shape
Some of the most fascinating findings came out of analyzing the body drawings; these represented how someone’s body was feeling when they came to the ER. Here’s what the empty worksheet looked like:
What did we learn?
The color red means pain, heat, injury
I’m going to start with the most obvious one, but it’s worth laying down — you’ll see this over and over through the rest of the examples.
Sharp shapes indicate sharp pain
Especially when combined with a red-orange-yellow color scheme:
Radiating lines from a wound mean pain
These lines from two different people’s drawings are emanating from a wound and, combined with the color red, seem to indicate ‘pain.’
Dots showed ‘itching’
Cross-hatching meant ‘tightness’
People drew both literal and figurative sensations
Some people drew organs, like lungs, on the body. I find this interesting because there are not as many metaphors for the sensation of not being able to breathe; so drawing the lungs is a reasonable way to explain what’s going on.
At other times, people drew a metaphor on the body. Below, the drawing on the left shows a lower back ‘on fire’ and the one on the right shows some kind of striated cube on the lower back (interesting that both of these were on the lower back):
Cool tones helped contrast the area of pain/injury with the rest of the body
Looking at the images together, another trend surfaces; some people tended to color the entire body in a ‘cool’ green or blue hue, to indicate that that part of the body was fine. Cool colors indicate calm, while warm colors were used to show when something was wrong.
Participants had different strategies for visualizing mental state
There are a lot of sensations in the mind that are hard to communicate: confusion, wooziness, lack of concentration, worry. People tend to draw these sensations outside of the body, especially the head. You’ll notice a ‘scribble cloud’ theme below:
Here two different people drew lines coming out of the head:
People used facial expressions to communicate mood & sensation
Another way to reflect mental state was to draw expressions:
One patient with arthritis actually drew little faces all over the body shape to indicate how a given part of his body felt:
One person drew body fluids —both sweat and vomit:
It was fascinating to see how two different drawings of a urinary tract infection; the drawings have different colors but overall are very similar. Both include fever, lower left back pain, and pain while urinating.
It hints at the potential of drawings to assist with diagnosis; what do given conditions ‘look’ like, on average, from a symptom/sensation perspective?
What we learned, overall
People liked telling and hearing stories visually. Even though we asked people to get into pairs and tell their stories, they wanted to hear the stories of everyone at the table.
Mapping it out helped people not forget the details of their story.
We noticed deep listening happening across the room during storytelling:
They wanted to take these methods back to their lives. One participant (clearly artistically-oriented) quickly sketched up an image to bring to his next doctor visit about his back pain:
Takeaways for people who want to help patients tell their stories
- On a timeline, allow for visual (pictures) or narrative (words) input. Allow a mix so that people can use whatever mode of expression works best for them.
- For symptom visualization, consider pre-existing shapes (sharp, dull).
- The color red is very important; allow a range of colors.
- Allow symptoms to appear outside of the physical body — things like mental states are often visualized outside of the head, and body outputs like sweat and vomit (and others) are important to consider.
- Allowing free-form shape creation and input will result in more creative and personalized expression.
It was a great pleasure, honor, and thrill (if I’m being honest) to help lead this session along with Chethan and learn from the participants. I’m grateful to all the folks who allowed me to use their images here. Hopefully this information will be useful for others who are similarly striving to make healthcare more visual.
Are you working on a related tool or product to help people visualize their health? I’d love to hear from you — drop me a note in the comments or reach out.
By Katie McCurdy and Chethan Sarabu, MDmedium.com
A universal language that transcends the borders of languages. Mercedes-Benz and Thai Health Foundation have…www.universallanguageofpain.com
Enrichment reading: interesting drawings of what ‘energy’ looks like: