Pain is often seen as a symptom of an underlying condition but not as a condition itself as it often may not have any visible signs, i.e. biomarkers. Untreated/misdiagnosed pain linked to opioid crisis.

Pain affects an individual’s ability to take care of themselves, pursue their passions, perform at work, spend time with family and friends and so much more. This Burden of Pain can significantly lower one’s quality of life by impacting their physical, psychological, and social well-being.

Most clinical assessment tools, like the McGill Pain Questionnaire (MPQ) focus on the specific characteristics of pain like location, severity, duration, etc. but ignore the burden it puts on people’s day-to-day lives. It is an on-going challenge for health researchers to understand more fully what this burden of pain may mean and impact patients’ ability to manage their pain.

The Challenge

To foster research in the biopsychosocial Burdens of Pain by engaging community members to share their experiences, the Arthritis Research Center of Canada (ARC), their patient-partners and the Pain Studies Lab wanted to use a Citizen Science approach to collect diverse and contextual information about the ‘burden of pain’ by asking citizens of British Columbia to share their pain-related experiences, and in turn providing them with a rich resource of data collected from individuals undergoing similar experiences.

The long-term goal of this project is to create a community of citizens and pain researchers who may help develop research questions to better understand and address the burden of pain.

What is Citizen Science

The term ‘Citizen Science’ refers to a collaborative approach that involves professional scientists who engage members of the public—citizens— in collecting and analyzing data in ways that may lead to scientific discovery. Multiple citizen science projects are underway around the world that focus on exploration of environmental changes, studying natural habitat like plant and animal species, to education, health, and public policy.

It leverages experiences of the public to gather information about a phenomenon; in turn, the collected information promises to satisfy contributors’ own curiosity about the phenomenon. It also helps engage a large group of people with shared objective, thus fostering a sense of community.

Participatory Workshop

I led an exploratory workshop with the help of a master’s student. 7 researchers (from nursing, physiotherapy, neuroscience, computer science, and design) and 4 patient-partners at this workshop tested four distinct approaches to record information about Burdens of Pain. Three of these approaches were based on traditional pain diagnosis tools and we ended with one novel method – mood card-sorting.

Researchers and patient-partners played the role of ‘citizens’ or users themselves and entered information about their personal experiences with pain while also addressing the benefits and drawbacks of each approach.

1. selecting from a medically classified symptoms list

1. Develop a personalized and personified way to talk about my symptoms

Participants needed a way to describe their symptoms in a personalized way with proper context and presentation of symptoms needs to be more relatable. They discussed the limitations of current data capture methods as they lacked a way to contextualize their symptoms.

Themes:

•Need to state all symptoms in own words as a part of “Me” and not as isolated systems

•Characteristics of symptoms differ based on type, location, and severity from person to person

•Duration of symptoms needs to be accounted for in multiple ways: period of existence, frequency of occurrence, presence in the moment, and changes over time

“I started having facial swelling 3 years ago, probably after a spider bite. It is constant and gets worse and painful when it is hot, or when I have fever or at night.” - Participant H

3. Understand how my symptoms might be related to each other

Symptoms affecting one part (or ability) of the body might lead to other symptoms. Participants found it challenging to describe the interconnectedness of their pain symptoms in the first three data collection methods we tested.

Themes

• Symptoms may have identifiable triggers (but not always) like:

1.   Changes in weather or environment

2.   Lifestyle changes, excessive activity, or lack of activity

3.   Effects of another symptom or medication for another symptom

• Treatment and management of chronic condition may increase vulnerability to other symptoms

“My chronic pain is constant and leads to insomnia making it difficult to fall asleep at night. The pain gets progressively worse every year and is often induced by stress and lack of rest.” - Participant D

2. Explain the physical feeling of the symptoms and its effect on my abilities

Symptoms can often limit the individual’s ability to perform day-to-day activities. Participants articulated a strong desire to find bet­ter ways to describe their symptoms and explain how they restricted their ability to perform daily tasks.

Themes:

• Physical ability might be hindered by symptoms due to loss of sensation, loss of movement and/or loss of strength

• Symptoms may often cause constant or momentary pain

• Discomfort like tightness, soreness or swelling hamper physical activity and can be frustrating to deal with

“I had a back injury 20 years ago which has led to constant back pain affecting my work and gardening.” - Participant B

4. Combined effect of symptoms is emotionally wearisome and affects my overall well-being

Multiple symptoms can affect an individual’s emotional/psychological state which in turn hamper the healing process or management of the symptoms. When asked to select a ‘Mood Card’, most participants selected the one below expressing how their symptoms made them feel as “exhaustion,” “fatigue” and “helplessness.”

Themes

• Feeling exhausted and fatigued as symptoms seem to use up all energy

• Not knowing how to deal with symptoms can lead to anxiety, depression, and a feeling of helplessness

• Need to find ways to feel comforted and relaxed despite the symptoms

“Certain symptoms are minor but exhausting. I feel helpless or feel grey when the symptoms are bad.” - Participant A

Experience Mapping

I mapped two distinct participant’s journeys with their symptoms to better understand system requirements for communication information about Burdens of Pain.

Participant Journey #1