Visualizing Wellness

Abstract

This thesis uses quantitative health data to explore the possibility of representing the impact on qualitative aspects of a person with Type 1 diabetes. It examines the existing global stigma surrounding this condition and questions the effectiveness of traditional health awareness methods.

The research delves into the relevance of data in our lives and its contextual importance in understanding the nuanced realities of living with invisible chronic conditions. The study then investigates existing data visualization practices from a creative lens.

Combining data visualization with storytelling intends to open new avenues for thinking about diabetes, not only as a medical condition but as a lived experience.

This thesis explores how health data, when creatively represented, can become a medium for empathy, awareness, and dialogue.

Keywords: Type 1 Diabetes. Health Awareness. Empathy. Data Visualization. Storytelling. Interaction Design.

Abbreviations:

T1D - Type 1 Diabetes

PT1D - Person with Type 1 Diabetes

CGMS - Continuous Glucose Monitoring System

FGMS - Flash Glucose Monitoring System

The Setting

These two statements, 23 years apart, show how little public understanding of Type 1 Diabetes has changed despite all our technological progress. The world has witnessed tremendous technological evolution and progress in human life over the past 30 years, yet the stigma and stereotypes surrounding this invisible condition remain largely unchanged.

This contradiction raises a fundamental question: Where does this lack of awareness originate? What types of data visualizations and existing visual tools exist for health awareness, and how do they impact health literacy in society?

The Limitations of Traditional Data Visualization

Traditionally, data visualization helps us understand large sets of information through colors, charts, and diagrams. We frequently encounter these visualizations in global statistics, stock market analysis, media outreach, and increasingly in personal health parameters such as fitness trackers.

However, traditional visualizations often fall short when it comes to understanding health data at a deeper, more human level. While these conventional approaches effectively communicate quantitative information, they struggle to convey the lived experiences and emotional impact of numerical health data.

In recent years, many designers have begun using data to create interactive artworks. Through sensory engagement and active participation, artists create sculptures and exhibits that inform audiences of new perspectives and viewpoints, revealing the complexities of living with chronic health conditions in ways that traditional data presentation cannot achieve.

Towards a New Approach

By comparing diagrams with maps, Tufte suggests that well-designed data representation can help reveal the complex relationships of our world that might otherwise remain invisible. Lupi extends this idea by encouraging us to look beyond the surface layer of numbers, sharing aspects of our lives creatively, and representing the complexities of human experience.

The phenomena that govern our world are, by definition, complex, multifaceted, and often difficult to grasp. As noted in Data Humanism principles, why would anyone want to oversimplify these complexities when making crucial decisions or delivering essential messages? In the context of health, these complexities are diverse. They require more than simplified bar charts and pie diagrams; they need a new lens, a fresh perspective, and innovative presentation methods.

This research looks at data not only quantitatively but also examines the impact it can have on the qualitative aspects of life. The question 'What do numbers feel like?' helps reveal the contextual relevance of data for people with T1D. It brings forth the emotions and feelings associated with these numbers, which usually go unseen.

By using data and storytelling to communicate the hidden nuances of T1D management, the proposed design intends to create better understanding and a lasting impact on the audience.

Understanding Data in Context

The research begins by understanding the history, role, and scale of data in our daily lives.

Early humans relied on basic and often accidental data to survive challenging environments and navigate life. From writing on walls to recording on magnetic tape, methods of storing information evolved alongside progress in technology.
Companies today analyze big data to transform raw information into actionable insights.
At a personal level, we also use data to make informed decisions. In the context of living with T1D, striking similarities exist between big data analysis methods and daily management approaches.

All this data, any data, eventually needs context to make sense. Although numbers represent crucial aspects of daily diabetes management, they lack meaningful context when viewed alone. Only when connected with specific symbols or situations do they gain greater value.

Life with diabetes revolves around wellbeing aspects familiar to most people: food, exercise, stress management, sleep, and medication. Yet for someone with diabetes, balancing these elements becomes an ongoing challenge and often an invisible act of care. Because diabetes is an invisible condition, these subtle nuances, which are also daily challenges, are seldom seen by others.

What possibilities exist for translating these intangible experiences into tangible forms? Could making sense of diabetes data open new paths toward developing empathy?

This thesis explores how health data, when creatively represented, can become a medium for empathy, awareness, and dialogue.

The Contemporaries

This section examines various projects by designers and museum exhibits relevant to our theme. The literature review also explores the creations of artists and researchers living with diabetes.

Through creative representation of personal health data, they push the boundaries of visual communication, offering new avenues for raising awareness and fostering empathy.

Museums- Curating a collection of interactive exhibits and educational programs invokes curiosity among its visitors while fostering a deeper understanding of human health.

John Snow- His traditional map showcases the power of data visualization and the impact it can have in promoting positive action.

Video Games- Through clinical trials, the larger intent was to gauge the impact of educational games in empowering self-care among children with T1D. Although these games include diabetes-related elements of play and instruction, they do not address the emotional and psychological impacts of the condition, something this thesis also attempts to address.

Doug Kanter- His work reinforces the idea that personal data is not only medical, but also capable of revealing complex relationships between lifestyle, physiology, and wellbeing. It reimagines how chronic conditions like T1D can be visualized, understood, and communicated

Quipu- What stands out about the Quipu is its materialization of data. Although still speculative and secretive, the layered information represents the cultural complexities of an ancient civilization. In the context of this thesis, the artistic encoding and data storytelling serve as a source of inspiration.

Glucose Landscapes- By turning personal health data into art, Sheneman’s work bridges the gap between the internal experiences of living with diabetes and their external expression.

Diabetes Data Sculptures- Many aspects of health management often go unnoticed, especially when the condition itself is invisible by nature. Through data, Harris creates these ‘tangible health calendars’ to increase the methods people have to understand health concepts and data.

Samuel Thulin- Thulin’s work closely aligns with one of the central questions in this research: ‘What do numbers feel like?’ Through an interdisciplinary approach, he reimagines the contextual association of blood sugar readings (numbers) with the self. His projects highlight the intangible bodily sensations caused by numbers through tangible, sensory-based experiences.

Angela Morelli- By sharing the quantity of water consumption that we do not see, Morelli informs us of the scale and impact of a resource on which we survive. She makes invisible data visible through interactive storytelling.

Giorgia Lupi- Through her projects, Lupi demonstrates how data can be transformed into engaging art forms to help convey more profound meanings. She encourages us to look beyond the mere facade of numbers and reveal the stories linked with them.

Summary-

The aforementioned examples provide a glimpse of how data can be used as a tool and as an asset to create experiences, artworks, and artifacts.

Additionally, contextualizing data and introducing aspects of storytelling helps highlight stories and facts that would otherwise go unseen.

By providing new perspectives on diabetes, this thesis hopes to initiate wider discussions about health awareness and wellness within society.

Through examination of these projects, the initial understanding that storytelling was simply about using data to assign meaning to numbers evolved significantly.

The review of the projects in this chapter revealed that storytelling plays a central role in uncovering the hidden nuances of data.

When the fundamentals of art and design are applied to these narratives, they gain structure and provide a journey for audiences to engage with and experience the data meaningfully.

The Players

To understand the spectrum of T1D awareness, it is essential to know both sides of the story: from those who have T1D and those who don’t. The latter group is further divided into caregivers and non-caregivers.

In addition to conducting interviews with 11 people across the 3 groups, themed surveys were also shared with groups 1 and 2 to understand the impact of numbers on their daily management, and with group 3 to get a generic overview of their awareness about T1D and its challenges.

Group 1- People Living with Type 1 Diabetes.

They are the core group and also the inspiration for this thesis. The focus is to gather their experiences, challenges, and learnings from living and dealing with T1D over many years.

Group 2- Caregivers

When someone is diagnosed with type-1 diabetes, it is not only the individual, but also the entire family that gets impacted. This group includes but is not limited to parents, siblings, partners, kids, friends, endocrinologists, social helpers and teachers.

Group 3- Non-caregivers

These individuals may not be involved in daily diabetes management but still engage with those who live with the condition. Understanding their perspective is equally important to gain a holistic view of diabetes awareness and the existing gaps that may need to be addressed. This group includes but is not limited to extended family, acquaintances, colleagues, employers, general physicians, educators, and social workers.

What do numbers feel like?

One of the research questions asked, ‘what do numbers feel like?’ investigates the impact of quantitative data on the qualitative aspects of the body.

To understand the contextual impact of blood sugar readings on emotions and behavior, an introspective survey ‘Contextual Numbers’ was presented within the T1D community. The survey included everyday scenarios which members of group 1 and group 2 had to consider while responding.

Based on information from the past, feelings in the present and activities in the immediate future, these static numbers drive fluid decisions, thereby emphasizing the contextual relevance of diabetes data.

Summary

Two themes emerged from the interviews with the three groups: information and stability.

In the context of our thesis question, the proposed design primarily targets non-caregivers. Since the stigma surrounding T1D persists, current health information sources lack sufficient effectiveness.

The design thus intends to create a better understanding and lasting impact, using data as a tool to communicate the nuances of T1D management.

The Experiments: Contextual, Sensorial, Tangible

Before proceeding to the final design, several data visualization themes were explored. These exercises investigated the contextual, sensorial, and tangible aspects of representing data. They helped understand the possibilities and challenges of translating observations into narratives, transforming static information into animated visuals, and evaluating their efficacy in adding value to temporal data.

Frame of Flights (Contextual)

This exercise attempts to capture the flight paths of various birds within that view as accurately as possible. The focus remains purely on the movement of the birds rather than identifying their species.

Both individual and combined images serve as temporal stamps of contextual data.Animating the paths brings the data to life, engaging the viewer with sound and dynamic visuals.

Sugar Beats (Sensorial)

This exercise builds upon the idea of the quantified self, attempting to represent the correlation between hard data (glucose readings) and soft data (emotions and experiences).

This experiment linked sound to color rather than exact numerical values. The random order of colors creates unusual variations of tunes over a steady rhythm.

Diabetes Data Threads (Tangible)

Inspired by the Quipu threads mentioned previously, this prototype represents an attempt to physicalize diabetes data.This exercise also explores the question: “What does a number feel like?”

The method of analyzing sugar data closely aligns with the methods of big data analysis mentioned earlier. The data in the first 4 columns consists of numbers. The latter half consists of their analysis, observations, and actions. Based on the time of the day, numbers extract different responses emphasizing the contextual impact of numbers.

Summary-

These exercises reflect a personal interest in artistically mapping data and consciously documenting them through contextual observations.

Collecting and representing data points of familiar occurrences also adds a human aspect to them. It helped showcase cultural and personal information in a new light.

These were the first steps in exploring the potential of a creative representation of diabetes data towards a better understanding of the condition.

The Experience

The process until this point has also led to the evolution of the proposed design solution. One of the initial questions:

How can we use data to engage audiences and guide them one step closer to developing empathy? now transforms into

Can experiencing health data foster empathy?

To design such an experience, it was important to understand certain key principles of interaction design.

In conjunction with data collected through research, these principles are intended to start small. Of all sensory spectrums that can be involved in interaction, for this thesis scope, I am exploring engagement of the two most common senses used to perceive information, visual and auditory.

Aided by a strong narrative, an audio-visual experience would connect with the audience at a much deeper level and ensure a higher information retention.

To incorporate all these assets successfully, we chose a combination of three coding languages: p5.js, HTML, and CSS. Apart from being accessible and compatible with each other, the resulting output can also be adapted to various screens. This allows the design to reach more people outside museum premises, with the possibility of being used on any screen.

During the interactive experience, audio feedback is coded to reflect sugar fluctuations with audio distortion directly. The chanting of ‘OM’ also establishes a human connection with audiences. Therefore, the resultant change in pitch and speed of sound directly conveys internal bodily distress.

Echoes of Control: The Interaction

The design is based on a graph, one of the simplest forms of data visualization.

In Echoes of Control, this glucose graph is interactive. Participants choose from a range of food options. The resultant impact on blood sugar levels is represented on the screen by a fluctuation in the graph. When the graph is within normal range, the sound is steady. However, fluctuations in the graph simultaneously distort the audio conveying bodily stress.

The graph repeats in a loop until the target is achieved, or the participant has used all chances, or they are satisfied with a particular result. Here, the loop is a metaphor for the never-ending act of blood sugar management.

Echoes of Control: The Experience

A post on social media, advertising the opening of a new exhibit in town. You buy tickets for the coming weekend.
At the ticket counter, you receive a strip with a random number on it. You are asked to keep it with you and use it throughout the museum to activate interactive exhibits.
You enter through a tube surrounded by dense liquid representing an insulin syringe. Metaphorically, all visitors are human cells, entering the body.
_The first room has a larger-than-life injection with a lava lamp, with liquid being pumped and refilled in slow, rhythmic intervals. ****Left wall:** The Insulin structure holds various information panels. ****Right Wall:** A mechanical pump sends glowing liquid across the ceiling to a radiating disk at the far end. __**The flooring** is made up of tiles similar to the ticket._
Upon finding their number, visitors can read stories associated with their number.
Digital exhibits present reliable information about the global reality of the condition.
Seminars and workshops by industry professionals give a deeper understanding of T1D and help clarify doubts and misunderstandings.
When inserted into a large-scale glucometer device, the ticket activates a new sequence of sounds on the drum kit. The rhythm is coded to the number on each ticket as well as the larger pool of inputs by other visitors at the exhibit
Participants receive a report of their interaction and a breakdown of individual aspects of their choices.
Visitors can further discuss their report with experts and gain more insights and guidance to tackle similar real-life outcomes.
Sharing experience on social media to spread the word and start a discussion.

Conclusions

While the Diabetes Data String prototype was static and required more time to decode and interpret information, the impact of Echoes of Control was more immediate and direct.

During all interactions, fluctuations in sound derived an immediate reaction ‘to do’ something. The change in pitch of the audio directly conveyed a sense of urgency and prompted action to stabilize the graph.

Participants clearly understood the challenges of Type 1 Diabetes management, which made them curious to learn more about this condition.

Additionally, they acknowledged being able to empathize with someone who has Type 1 Diabetes, especially in social contexts where food and activities are involved.

Thus, exposure to nuanced health data communicated through engagement of auditory and visual senses, accessed and experienced within a curated collection of museum exhibits, leads to a newly elevated sense of empathy.