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CHRONIC(LING) PAIN

THE PROBLEM

This was my final thesis project for my BFA in Graphic Design at the Rhode Island School of Design. It combines
my interest in digital health and my experiences with chronic pain.

I wanted to use this opportunity to explore the ways in which design and technology could be used to address the issues that I have dealt with and still deal with now as a result of living with chronic pain. These issues include accurately describing pain symptoms to healthcare professionals and keeping a pain diary, motivating myself to adhere to exercises I was prescribed, and discussing my condition with the people around me.

TIMELINE

18 Weeks

January—May 2021

TEAM

This was a solo project, and was the final thesis project for my undergraduate degree.

KEY GOAL

Develop a language 

and a system to help people with chronic

pain to describe and manage their symptoms.

AREAS OF
INQUIRY

I began the project by devising five main areas of inquiry, which I used to anchor my research and thinking. These areas were:

  • Visualization - How can different types and levels of pain be expressed through a collection of commonly understandable symbols, and how can these symbols be used to aid communication between medical professionals and patients?

  • Public Education - How can design and technology be used to raise awareness of chronic pain, including the different types, causes, symptoms, treatments, and long-lasting effects?

  • Motivation - How can design and technology be used to encourage adherence to prescribed exercises when patients are in pain, which also affecting their mental health and motivation?

  • Communication - How can design and technology be used to facilitate effective monitoring and communication between medical professionals and patients?

  • Rehabilitation - How can design and technology be used to relieve pain and the negative effects of chronic pain on one’s mental health?

INITIAL
RESEARCH

My initial research began with a series of readings about how to design for people with chronic pain and how to communicate complex medical information to laypeople. 

Based on my own experiences with chronic pain, I then created an persona/empathy map, before proposing my intitial ideas for the final deliverables.

Readings (Key Takeaways)

  • Being able to visualize and map pain onto the body makes it much easier and more engaging for laypeople to describe and understand their condition

  • Information is easier to digest when it is immersive and interactive (sound, motion, VR etc.)

  • Active verbs should be used

  • Flexibility and adjustability are important - giving people options improves accessibility

  • Reward processing and positive feedback are good for motivation

  • Showing a user their progress visually is good for motivation

  • Use language that does not draw attention to pain

Persona/Empathy Map

As a warm-up exercise to help with idea-generation, we were given an assignment to collect/list a series of items in different categories, e.g. 5 hardware store items,

5 abstract feelings, etc. I decided to use this as an opportunity to create a persona/empathy map and start to think about what someone with chronic pain would think, feel, say, and do. I used the items I collected for inspiration. For example, "My body feels like I'm lying on a bed of nails," with nails being one of the hardware store items I collected.

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Pain Rating Scale and Icon Analysis

In order to explore ways to describe abstract pain sensations, I analyzed existing pain icons and rating scales.

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ANALYSIS:

  • It's difficult to standardize intensity/numerical ratings.

  • Scales do not indicate the TYPE of pain.

  • Many existing icons are generic representations of adjectives and do not accurately capture the actual sensation.

  • Pain mapping/showing pain on the body is very effective and provides a more comprehensive picture.

Final Deliverable Proposals

  • After considering the key takeaways from my various forms of research and ideation, I proposed three main deliverables:​
     

    • Icon Set

      • A set of static and dynamic icons representing different pain sensations that could be used to describe pain to a healthcare provider
         

    • Poster Series

      • A series of posters describing various chronic pain stories to help the public better understand the condition

      • PIVOT - I later changed this idea, and instead proposed a series of videos with voiceovers, as this would allow the inclusion of motion and sound in describing the pain symptoms discussed​
         

    • Paired Apple Watch and iPhone Apps

      • A pair of apps allowing users to record their pain symptoms, receive advice and prescribed exercises from their healthcare providers, and communicate with other users

BREAKING DOWN THE PROCESS 

The full design process is detailed below. In order to skip to the final presentation video which demonstrates the final iteration of each deliverable, please click here.

ICON SET: Pain Diary

 

In order to build up a visual language for describing pain and to begin generating ideas for the pain icon set, I created a visual pain diary over 5 weeks. 

Any time I felt pain (whether related to chronic pain or simply things like sore throats), I spent a couple of minutes visualizing it in Illustrator, resisting the urge to ‘over-design’ it and trying to make it as organic and representational as possible.

 

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ICON SET: Case Study

 

While creating the pain diary and starting to look for ways to visualize abstract symptoms, I came across Bruises: The Data We Don’t See (Pentagram). This is a data visualization demonstrating the progression of the petechiae and bruises on a girl with a skin condition, with each type of mark being represented by a particular gesture. 

This visualization does an excellent job of storytelling and mapping out the patient’s journey in detail, and it’s nice to be able to see all of the data at once. It’s also nice that the final result is a beautiful image that feels positive rather than dwelling on the painful symptoms.

This case study gave me some ideas for how to bring together the different pain icons to show progression over time.

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ICON SET: Iteration 1 (Static)

Using the symptoms and gestures from the pain diary, I generated a set of static and dynamic icons for 10 pain symptoms using Adobe Illustrator, Photoshop, and Keynote. While the static icons are not as useful for describing symptoms as the dynamic versions (shown below), they are useful for representing pain symptoms in places where sound and motion may not be appropriate or possible, such as printed medical reports.

 

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ICON SET: Iteration 1 (Dynamic)

Icon Set - Iteration 1

Icon Set - Iteration 1

Watch Now

USER TESTING & USER RESEARCH

Google Forms Survey - 20 Respondents

After the first iteration of the icon set, I sent out a Google Forms survey asking participants to assess the accuracy of the icons. I felt that creating an initial set of icons before conducting the user research would increase the chances of completion by participants as suggesting edits to a reference image is a less daunting task than being asked to describe an image from scratch. 

 

The survey also solicited people’s chronic pain stories, to be used as the basis for the Public Education videos, and information pertaining to chronic pain management, to be used as the basis for the design of the Apple Watch and iPhone apps.

> Icon Set - Accuracy and Suggestions

 

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> HCP Communication - Describing Pain

  • Out of ‘Words/Adjectives’, ‘Visuals’, and ‘Sound Effects’, ‘Words/Adjectives’ was the most popular option by far, which I found interesting because the user testing results for the pain icons were highly inconclusive, both in terms of narrow majorities regarding accurate vs. inaccurate ratings of my initial icons, and the contradictory suggestions from people who voted ‘inaccurate’. 

  • I found that some respondents even used other categories of pain when offering suggestions for how to improve an icon; for example, one used the word ‘tingling’ to describe how they would improve ‘Numbness/Weakness’.

  • This lack of consensus is precisely why I decided to create icons that could describe exactly what a person meant by a particular adjective. 

  • As such, I think that visuals and sound effects are highly necessary despite being less popular in terms of preference. 

  • I therefore decided to have a stock set of icons to accompany words/adjectives, but also allow users to edit the icons provided, including the names, and provide additional written descriptions.

> HCP Communication - Exercises

  • Motivation and Adherence​​

    • Many respondents said they found it difficult to stick to their prescribed exercises for a range of reasons, including not having time, simply forgetting, feeling demotivated, or being in too much pain. 

    • The majority said they would be more likely to adhere to their exercises if they had reminders, with rewards being a less popular incentive.

    • I therefore decided to prioritize reminders and encouraging messages over rewards.​

  • Types of Exercises and Exercise Instructions​

    • Most people said that having a range of options, including dedicated workouts, and small movement tasks that could be integrated into their daily routines would be optimal. People also noted that certain exercises were not possible for them due to specific injuries they had. 

    • Respondents also liked having a range of options regarding how the exercises were dictated to them, including written, visually, and verbally. 

    • I therefore decided to increase accessibility by providing a range of options within the apps, as well as an onboarding questionnaire that would inform the user’s healthcare provider of their preferences and needs.

> HCP Communication - Pain Relief Techniques

  • I found that CBT, Sound Therapy, Mindfulness/Meditation, and Guided Imagery were all fairly popular psychological pain-relief techniques, with Games/Gamified Relief being hugely unpopular. 
  • I therefore decided to users with a choice of the former, in addition to a section with additional suggestions and resources, which could include external links to pain-relief games.

> HCP Communication - Community Building

  • There was no overall consensus regarding community building/forums/chatting with other users, but I did find that most of the people who did express an interest in this feature already had access to it through another app or online support group. 
  • I will therefore keep this as a potential v2 feature, and instead decided to put the ‘Public Education’ videos in the iPhone app, which will provide users with a degree of solidarity and encouragement.

> HCP Communication - Sounds/Colors

  • Regarding pain-relieving sounds, suggestions included rain, train/railway, classical music, and calm music; I will incorporate some of these into the exercise and pain-relief videos within the apps in the future. 

  • Regarding pain-relieving colors, suggestions included pink, blue, white, gray, and green; these informed the branding of the apps. 

 

ICON SET: Iteration 2 (Static)

I revised the static and dynamic icon sets to accommodate some of the suggestions from my user testing survey, with the intention of still enabling users to edit the icons to suit their needs.

 

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ICON SET: Iteration 2 (Dynamic)