In my thesis expiration, I have been researching how to help patients to leverage their own data for greater empowerment and agency. Through my expert interviews and literature reviews gathered insights about the challenges patients face in medical self advocacy which have informed the research study. I interviewed Dr. Dave Pao, a practicing physician who also researches the influence of the medical record on the doctor patient relationship. When I asked what the barriers were to doctors seeing the patient as a person. He cited the medical record as part of the problem. If the doctor is searching for information his cognitive load is wasted. Visualization affords better cognition, affording more efficient use of mental resources. . One example is how a stop sign provides a mental shortcut the driver. Having to read the type on different shape or color would increase the cognitive load and maybe cause accidents.
Medical researcher and patient Gigi Kreibich stressed the importance of supporting medical complaints with data so they can be taken seriously. On a personal level, she believes self tracking helps her validate feelings and remember symptom patterns.
Quantified self describes the theories driving the movement. The theory of socio-materialism recognizes the role of material objects in development of selfhood and embodiment. Building on socio materialism theory is the concept of assemblage which is the configuration of humans, non humans, practices, ideas and discourses combined into a complex system. (Marcus, 2006). Human usage of health trackers is one form of assemblage. Lupton describes how smartphones embody the user by encapsulating personal messages, photos and appointments. Self tracking devices further embody the user through archiving bodily functions and movements.
“At a more symbolic level, self-tracking devices can be understood as the prosthetics of selfhood.” User performs embodiment and identity by wearing self tracking device. Early life loggers thought of technology as an extension of human memory. Self trackers are digital biographers, latter day versions of diaries and scrap books.
Self tracking is one of the factors shifting the doctor-patient paradigm from a authoritarian hierarchy to a collaborative relationship. In the near future, access to health information will be democratized giving patients more agency in their care. The doctor’s role will be to guide the patient through a sea of information. Giving this shifting paradigm, patients need better tools to increase awareness of selves to be effective in managing their care.
This insight prompted an analysis of available self tracking tools. Currently, most of these tools gather information in quantitative manner. The strength of this approach is that the habit of self tracking alone improves outcomes. However, a slew of data without the tools for sense making not empowering. In my research study I explored ways to create better tools for recording quality of life. My theory is that this deeper reflection can help people to understand themselves, thus empowering them to tell their story better.
Another short coming of current tools is poor quality visualization. Fit bit reduces the user to a high quality chart while mood tracking apps mostly rely on unimaginative smiley faces. While meaningful health visualizations do exist, they tend to depict a single health event or concept.
What would happen if we borrowed from these experiments to create visualizations of daily wellness?
Design researchers have explored metaphor as tool for visualizing the invisible. In Dr. Dan Lockton’s course New Ways to Think, students created data physicalization using landscapes as metaphor for their career paths. Mountains can represent obstacles to overcome, while bad weather represented difficult times. Karriane Rygh uses sailing as a metaphor for navigating the health care system. She cites Lakoff’s contemporary theory of metaphor which describes metaphors as more than just words but mental modals of the speaker.
More water related metaphors such as “leaky bucket”, “swimming upstream”, “drowning in a sea of what ifs” surfaced when I did a search for metaphors related to mental health, stress, and wellness. The definition of stress itself was a source of inspiration. It is defined as “pressure or tension exerted on a material object” This brought to mind the structure of a building or object itself and the ways it could be made weaker. A structure could be crushed by supporting more weight it was designed to carry. Or it could collapse due to an inadequate foundation. Metaphors such as “I’m on shaky ground” come to mind. Notes on a nervous planet written by Matt Haig, who suffers from with social anxiety. He viewed the energy needed to socialize as currency and precisely lists how much currency is needed for certain activities.
The metaphors above related to mental health while my thesis focuses on medically unexplained symptoms. I was interested in metaphors focused on physical illness as well. In a Table of Metaphors: The Visual Representation of Chronic Illness sufferers of chronic fatigue develop metaphors which are broken down in categories of fog, invasion, fracture, harm and loss. Patients describes chronic fatigue as “having your body filled with wet sand” and “Swimming in a fur coat after running a marathon”
This research informed the auto-ethnographic study of an unproductive week. I diagramed a series of events and was able to see clearly how lack of self care early in the week resulted in burnout later in the week. Of the metaphors I discovered the ocean seemed to allow for the most diversity. I decided that obstacle would be the current direction and speed while my energy would be represented by swimming. So a hectic day would be shown by swimming against the current. Burn out would look like someone sinking. I created one simple sketch to illustrate my wellness for each day of the week. Through these sketches I was able to explain my week more comfortably and with greater depth then usual. Other were able to relate to the metaphors in my drawing more easily than a detailed description. The universality of metaphors allowed each drawing to serving as an icon for my wellness.
I expanded the this vocabulary using the above mentioned sources for inspiration. I photocopied them and placed them in sets along a the bottom of a whiteboard. Along the top of the whiteboard I wrote. “How are you doing today? “ and invited guests to use one one or more of the drawing below to tell their wellness story.
Wellness of colleagues by percentage of metaphors
Choosing a Metaphor vs Drawing your own
Only one participant chose to draw her own metaphor, A fish in milk. I asked her about the origin of this expression and why she chose to draw it. Here is her response: “I made it up. Yesterday, a classmate asked me how I was doing. I told him I felt like a fish swimming in milk, I’m swimming but it’s uncomfortable. It’s not a good thing.”
One Drawing vs. Many Drawings
I added examples showing how multiple drawings could be used to create a narrative. For example “on the right path” followed by “Falling through the cracks” No one chose a narrative approach however some chose two drawings to express simultaneous feeling such as “Painted in a corner” and “in the clouds” Most chose one drawing which told me they were mostly concerned with their current wellness without reflecting on the past. One student followed up on her previous choice “ lost at sea”. She had chosen this because she was confused about her project. Since then she has gotten direction from her professor but has little time to execute so now she is “weighed down”
Visualization affords efficient mental processing
Earlier I mentioned Dr. Dave Pao’s comment on how visualization affords faster cognition allowing for more efficient use of mental resources. Initially, I was concerned my studio mates would dismiss this as a time consuming exercise.One student responded on how visualization allowed her to identify her feelings more quickly than if she were to describe them. I was surprised how many classmates were able to walk into the room and Identify which drawing applied to them almost instantly.
Metaphors afford expression of a shared experience
Some questioned why metaphors were necessary for expressing wellness at all. This study demonstrated Lakoff’s assertion that metaphors afford the expression shared mental modals. Students were able to see how many classmates felt similarly to them.
Externalization improves communication with self and others
Earlier I discussed socio materialism theory which is the role of external objects in development of selfhood. This study demonstrated how externalization of wellness affords the ability to interact with their wellness as something outside of themselves. The externalization of this shared experience afforded safety, empowering deeper conversation wellness. Students who walked into the room together and noticed the board they talked amongst themselves about which metaphors best applied to them and why.
Direction on future studies
Limits of Metaphors as a form of expression
It was not possible to include all metaphors in the study. This may have biased participants to choose the closest
- Test effectiveness of metaphorical vs non metaphorical images. It would be interesting to study the affordances of both.
Metaphors are not universal
Some students asked me to explain the meaning of a some metaphors. I realized metaphors were all are western in origin. Some are specific to certain regions or social classes. Moving forward I would like to consider cultural inclusivity.
- Create tools to help people create their own metaphors
- Create diary study for people. Allow participants to choose a different metaphor or image for each day.
As the semester draws to a close, everyone is experiencing a great deal of stress. This exercise allowed us to visualize our shared experience. I can compare the out come to how friends share how movies or songs describe life events. The media references become a shorthand for past experiences. The difference is this is a media representation of our wellness as we are experiencing it.
I can draw the following conclusions from this study. Capturing embodied experiences through imagery and words allowed people to quickly identify their lived experience. This also allows for a shared understanding of the experience with others. Having this artifact to interact with does indeed encourage further and deeper conversations about wellness.
Rygh, Karriane Strategic design of affordances and metaphors in tangible tools for co-creation. Centre for Design research 2019
Lupton, Deborah. Quantified Self. Polity Press, 2016
Haig, Matt. Notes on a nervous planet. Penguin Books. 2018
Delanie Ricketts and Dan Lockton Mental Landscapes : Externalizing Mental Models Through Metaphors 2018
Gibbons, Ruth Elizabeth Anne A table of metaphors : the visual representation of chronic illness : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Social Anthropology at Massey University, Albany, New Zealand 2010