Play, pain, partner 22.01.2020

Earlier this month I told you that I was involved, as a volunteer Patient Partner, in two different projects relating to chronic pain. One is a knowledge translation (KT) project, with the Pain Science Division (PSD) of the Canadian Physiotherapy Association (CPA). This project pulls together individuals from across the country, and includes two Patient Partners.

The other is a research project, at Concordia University in Montreal. Named “Play the Pain”, this project is being funded by a government grant which was created to encourage “disruptive innovation”(1); the

capacity, thanks to its intersectoral focus, to go beyond the boundaries of what is known, to break with its inherited frameworks and standards in order to produce radically new knowledge of a theoretical, epistemological, methodological, aesthetic or technological nature that will transform the research field.”(1)

AUDACE Program: Fonds de recherche du Québec

As part of this inter-sectoral approach, the research is being conducted through the University’s PERFORM Centre along with its TAG (Technoculture, Art and Games) group within The Milieux Institute for Arts, Science and Technology.

There may also be collaboration with the McGill Centre for Integrative Neuroscience (MCIN). Montreal is home to many universities, so it’s not uncommon to see research projects that stretch beyond the walls of one of these institutions.

One of the innovative approaches of this team was to organize a free drop-in style two-day event last October. Each individual session was geared to chronic pain patients, as well as to pain science researchers and those who treat pain conditions.

These Play the Pain workshops included art therapy, creative writing for pain, dance therapy, humour, music therapy, and yoga, interspersed with scientific presentations.

Another innovation will be the development of a play-based and game style app for people living with persistent pain – with us, not simply for us! The app would include options to track your pain, to try different types of non-medical therapies like art or dance (in addition to any prescribed medications), and even to network with others who have chronic pain. One of the aims of the research project is to:

explore the ethical, practical and cultural tensions between lab-based research that focuses on medical conditions, versus data-driven research that focuses on self-monitoring and sharing of one’s living conditions through digital health frameworks.”(2)

Media Health; Concordia University

The idea is that each person who uses the app to track their pain, for example, would be able to decide – for themselves – whether they’d like to share their self-collected data with pain researchers. Possibly even with their own doctors, if their physicians are willing to view this type of information.

To create this app, the project “brings patients, scientists, designers and engineers together, to investigate the best ways to empower patients to assist in advancing medical sciences.”(3) As the neuroscientist-engineer who’s leading Play the Pain has said, the goal is to put the patients at the heart of pain research.

Focus Groups

In this phase of the project, we’re setting up Focus Groups which should begin in February. We need to hear from other chronic pain patients, to find out what they’d like to have in this type of app. So one of my volunteer tasks was to create an image and very brief message, which could be used to encourage folks to participate in one of these Focus Groups.

This the other format of the image that I created, for Instagram and Twitter, using one of my own photos. These are just some of the medications that I’ve tried, for my rare disease (Complex Regional Pain Syndrome or CRPS), and which failed to make any difference.

For anyone who is visually impaired, here’s the text embedded into the image:

Do you live with #ChronicPain?
Want to comment on a new game + research app, to be designed for pain patients like us?
To join a short Focus Group, contact media.health@concordia.ca
Info + video clip: media-health.ca/play-the-pain
[Image: ©Sandra Woods]

Whenever I create imaging for my disease awareness and patient advocacy activities, I try to first work out a rationale; a concept of what the image should convey. Here is my rationale for this Play the Pain social media ‘poster’:

A. Given that chronic pain predominantly affects women, I wanted an image with some pink – font and some of the capsules or pills – but not so much as to exclude other/fluid genders

B. The other colours welcome men (blue) and other/fluid genders (yellow, white), while the overall mix of colours represents diversity – hopefully without overwhelming the eye

C. For the playful approach of Play the Pain, I opted for a photo with bright colours to pop against a neutral background

D. The bright lighting of the image reflects the concept of ‘shedding light’ on pain, through research

E. The subject matter, pain medications will likely be familiar to anyone living with persistent pain

F. I took pains (pardon the pun!), when setting up this photo almost a year ago, to ensure that no medication names were shown

G. The #ChronicPain hashtag is included, because it covers ALL pain conditions

H. The phrase “Do you live with…” includes caregivers, people who live with chronic pain within their family, home, and life.

What do you think?

Do you like the poster? Is it too bright, too busy? Not bright enough? Should there be less text, or more? I’d love to hear your comments, so please feel free to comment over on Instagram or Twitter.

Regular readers will know that I’ve had to disable comments on the blog, because of spam-attacks from overseas. I have a difficult enough time maintaining the blog, due to my CRPS-related mild cognitive impairment, so I just can’t deal with those types of attacks. The site is safe, though, because my website host handles all of the security, updates, and patches for me ‘-)

Oh, and please consider joining a Focus Group for this app!!!
Just send an email to media.health@concordia.ca.

References

(1) AUDACE Program: Fonds de recherche du Québec (Quebec Research Grants). Government of Quebec: Scholarships and grants. Online. Accessed 22 Jan 2020:
http://www.frqsc.gouv.qc.ca/en/bourses-et-subventions/consulter-les-programmes-remplir-une-demande/bourse/audace-program-fall-2019-xrfho6qa1562770626460

(2) Play the Pain. Media Health; Concordia University [Media Health Lab is a collaborative initiative supported by Concordia University PERFORM Centre and The Milieux for Arts, Culture and Technology]. 2019. Online. Accessed 22 Jan 2020:
http://media-health.ca/play-the-pain/

(3) Research: Projects. Media Health; Concordia University [Media Health Lab is a collaborative initiative supported by Concordia University PERFORM Centre and The Milieux for Arts, Culture and Technology]. 2019. Online. Accessed 22 Jan 2020:
http://media-health.ca/projects/