Paindex: Exploring new ways to understand pain in flux 

Carnegie Mellon
Fall 2014–Spring 2015

Graduate Thesis

Participatory design research and development to explore new ways to precisely visualize pain; a dynamic physical and emotional experience, in flux.

Pain is the most common reason that patients access the healthcare system, and is something that is interpreted differently by patients and clinicians. The scope of my thesis is around the communication of pain, between a patient and a clinician. While there are a lot of differences between acute and chronic pain, in terms of the mechanisms inside the body and mind, my focus is on how the communication of that pain occurs. When I say patient, I am talking about anyone who has had a conversation about pain with a clinician. And when I say clinician, I am talking mostly about nurses… and sometimes physicians who discuss and assess pain with patients. 

Below is a poster I presented to a panel in December which synthesized my design research activities (Fall 2014) and proposal of next steps (Spring 2015). 


Research Overview

My research began with a literature review of 20+ papers, a proposal to my advisors, Dan Boyarski and Aisling Kelliher, and an approval of my IRB application. 

I interviewed clinicians (nurses and physical therapists), and pain researchers who are directors of the pain research center at the University of Pittsburgh. 

I interviewed 8 patients, 3 of whom experience chronic pain and 5 of whom have experienced acute pain. In my directed storytelling interviews I asked patients to tell me about successful and less successful anecdotes of their experiences describing and communicating pain with a clinician. I also had them fill out a variety of typical pain assessment forms, and think aloud while filling it out.


Synthesis overview

Through extensive synthesis of my qualitative and less so quantitative data (full documentation will be ready in April-May 2015), and considering the timeline and scope of my project, I have decided to focus on the first problem I uncovered which is that regardless of pain category, no one feels satisfied with quantifying their experience of pain on a scale of 0 to 10. Patients find the current question difficult to answer – the form that it takes is static. They say it doesn’t feel accurate or specific; rather it is vague and ambiguous. Additionally patients said that there is little to show them how their pain fluctuates over time. Time is currently the most important element missing from the tools used to represent pain. 


I will be studying whether a new form of pain representation which takes into account time, positively impacts the conversation around pain. I am currently in the process of designing and iterating. My medium is a combination of animation and digital interaction. 

A measure of success for the project would simply be that – a new tool has more communicative value and potentially serves to further our understanding of another's pain as well as our own personal journey of pain.

My thesis document will also look into how pain is not just an individual physical or emotional experience. The ways in which it is represented and imagined, and the knowledges, beliefs and values that surround it, have a direct effect on how it is experienced and managed by individuals, families and social groups.