August 2020 Newsletter
From our Executive Director, Maria Hudspith
What does it mean to engage people who live with pain in research?

People who live with pain are leading a movement to redefine the role of lived experience in research. Whether it's the Patients Included Charters, which set out criteria to make scientific meetings more inclusive, or the various funders who increasingly require researchers to work collaboratively with those most impacted by their research, the culture and design of pain research is slowly changing.

I've had the opportunity to work alongside a skilled and dedicated group of people with lived experience of pain through my involvement with the Chronic Pain Network (CPN). The CPN was funded in 2016 by the Canadian Institutes of Health Research – the major funder of health research and the first national pain research network ever developed in Canada.

One of the fundamental principles of the CPN is to engage people with lived experience in all aspects of the Network, from specific research projects to the governance of various committees. Along the way, there's been a lot of learning and our efforts to engage people with pain in the work of committees have been very successful. Many researchers have demonstrated tremendous commitment to engagement and have made partnerships with patients a cornerstone of their work. However, some researchers have struggled to understand how to engage people with pain. We're still learning and are working with an independent team of evaluators to critically examine what has worked well and what we can improve.

The highlight of this work has been building connections with people who live with pain from across Canada. My primary partners in this work have been Dawn Richards, a Toronto-based advocate and citizen scientist from the arthritis community, and Mario Di Carlo, an educator and promoter of patient engagement from Montreal. Together, we have collaborated with a group of people living with pain who have overseen projects, co-chaired Committees, co-designed research projects, provided guidance on surveys and other research instruments, and informed knowledge mobilization approaches and more.

Most recently, some of CPN's patient partners co-wrote a ground-breaking article on acknowledging the contributions of people with lived experience in published research findings. While there is a growing understanding about the "how-tos" of engaging patients in research, this new article furthers the conversation and expands on traditional ideas about research collaborations and research authorship. It's another significant achievement for CPN's patient partners and one I hope will pave the way for greater recognition of the many contributions people with lived experience make to research.
Pain BC programs, resources and updates
The following programs and initiatives are funded, in whole or in part, by the Province of British Columbia: Coaching for Health, chronic pain management workshops for health care providers, Gentle Movement and Relaxation course, Live Plan Be, Making Sense of Pain, Pain BC's monthly webinars for health care providers, Pain Foundations, Pain Support and Wellness Groups, Pain Support Line and the Pain Waves podcast.
New episode of our Pain Waves podcast
Orofacial pain: As told by two dental experts

Orofacial pain – pain that occurs in the mouth, jaw, face, or head – impacts approximately 22-26% of the population but is not always well understood due to the complex structures and functions involved in the region.

In this month’s episode of the Pain Waves podcast, we’re joined by dental experts PJ Murphy and Alberto Babiloni to learn about what orofacial pain is, what causes it and makes it worse, and common treatment and management options that are available to help.
Our supports for people with pain
Access our free pain self-management resources, including evidence-based articles, assessment tools, and an anonymous discussion forum.
Connect with a trained volunteer to talk about your pain, get help with finding a new physician, find information on community resources, and much more.
Join an online group and build a community of support while learning about pain, pain management and coping strategies.
Receive one-on-one phone support and mentorship from a coach who will help you learn about self-management, regaining function and improving your well-being.
Gentle Movement @ Home: Guided movement and relaxation for pain during COVID-19 (and beyond)

Gentle Movement @ Home live-streaming sessions provide guided movement and relaxation designed to help people with persistent pain learn to feel safe to move again. Topics include breath awareness and regulation, body tension regulation, and movement and relaxation techniques in both seated and standing positions.

37 session recordings are available and free to access on demand via our YouTube channel.
Upcoming Pain BC and partner workshops, webinars and courses for health care providers
ONLINE WORKSHOP: Chronic Pain Management for Registered Massage Therapists
This workshop provides RMTs with an opportunity to learn how modifications of traditional massage therapy practices can increase success and improve outcomes for people in pain.

Due to COVID-19, our workshops are now offered online via Zoom and are accessible to RMTs from any region of the province. Please note that, in its new online format, the course will be broken up into two-hour blocks and will be held over three days.

Upcoming dates:

  • September 25-27, 2020: Register now (Register before September 7 for the early-bird rate)
  • November 20-22, 2020: Register now (Register before October 30 for the early-bird rate)
BC ECHO for Chronic Pain: Cycle 3 registration now open
Health care providers of all disciplines are invited to join our virtual community of practice to gain improved competence in providing care for complex pain cases. Cycle 3 begins on September 15, 2020 and will run until June 2021. Providers have the option to register for individual sessions or for the entire cycle. A full list of dates and topics can be found on our website.

Gentle Movement and Relaxation course
This free, online course will equip physiotherapists and other therapeutic movement professionals with practical knowledge and teaching resources to lead their own movement and relaxation programs for people living with chronic pain.

The Gentle Movement and Relaxation course is currently available to BC health care providers only.

Pain Foundations
This online course is designed to address the challenges faced by health care providers of all disciplines when assessing and treating people living with chronic pain. The course is free for health care providers in BC; a pricing structure for other geographical locations is coming soon.

Other programs, opportunities and resources
UBC Clinical Skills Volunteer Program

UBC's Undergraduate Medical Program is looking for volunteers who live with chronic pain to help train medical students with virtual history taking sessions. All sessions will be held online and can be completed from the comfort of your home. Sessions will run from mid-September to April 2021 and volunteers will receive a $20-$50 stipend for participation for each session. Anyone interested is encouraged to contact Kelly Levido, the Year 1 Patient Coordinator at [email protected].
Government of Canada: One-time payment to Canadians with disabilities

The Government of Canada is providing a one-time payment of $600 in recognition of the extraordinary expenses faced by people with disabilities during the COVID-19 pandemic. You are eligible to receive the one-time payment if you: currently receive the Disability Tax Credit (DTC) or are eligible for the DTC and apply for it by September 25, 2020, or if you receive the Canada Pension Plan Disability Benefit, Quebec Pension Plan Disability Pension, or one of the disability supports offered by Veteran Affairs Canada. No application is required and payments will be issued in the fall of 2020. 
New CPN PEER webinar series: De-mystifying patient engagement in research
August 20, 2020 at 11:00AM PST

The Chronic Pain Network (CPN) is hosting a new Patient EngagEment in Research (PEER) webinar series that aims to apply a patient engagement lens on various topics related to scientific research. Its upcoming webinar on August 20, 2020 will discuss "De-mistifying patient engagement in research: A collaborative journey" and will be led by two advocates with lived experience of pain, Delanie Linkiewich and Jennifer Cyr-Daly. Participants will have opportunities to engage in discussion with presenters. The webinar series is primarily intended for research trainees but anyone with an interest in the topic is invited to attend.
Upcoming free webinars by the Canadian Pain Society

Social inequities and pain: The untold history of black people and chronic pain (August 31, 2020 at 12:00PM PST)
This free webinar aims to push forward the conversation of racial issues impacting both providers of pain management and the delivery of pain care for patients. It will include an interactive, interdisciplinary panel of leading international experts in pain and health disparities (Dr. Carmen Green), bioethics (Dr. Daniel Buchman), and intersections of race, crime and criminal justice, with a particular focus in the area of policing (Dr. Akwasi Owusu-Bempah).
The lived experiences: Conversations about pain (September 16, 2020 at 12:00PM PST)
Join two advocates living with pain, Emeralda Burke and Therese Lane, as they share their stories of living with persistent pain, their interactions with health care systems, and what it means to recover or live better with pain. These unique insights from people with lived experience serve to broaden the understanding of pain and pain treatment while complementing scientific research and clinical expertise.
Free CADTH webinar: Physical activity as a non-pharmacological approach to managing chronic pain
September 23, 2020 at 11:00AM PST

The Canadian Association for Drugs and Technologies in Health (CADTH) is holding a free webinar on September 23, 2020 to discuss physical activity as a non-pharmacological approach to managing chronic pain. Dr. Susan Tupper and a person living with pain will be among the speakers. The webinar is primarily geared towards health care professionals, researchers, educators and students but anyone with an interest is invited to attend.
Health Canada temporary exemptions on prescribing opioid medications: Extended exemption

In response to the evolving COVID-19 pandemic, Health Canada issued temporary exemptions in April 2020 to maintain access for people who are currently taking opioid medications. The exemption enables Canadian pharmacists to extend or refill opioid medications without a renewed prescription, transfer opioid prescriptions to other pharmacists as needed and deliver opioid medications to people in pain who are self-isolating at home. The extended exemption also now allows prescribers to prescribe/renew opioid medications by phone and will be in effect until September 2021. The full exemption notice can be read at the link below.
Virtual research conference for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
August 21, 2020 from 7:00AM-12:30PM PST

The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) is holding its 2020 annual research conference online on August 21, 2020. The half-day conference will focus on all biomedical, public health, and behavioural aspects of ME/CFS and associated co-morbidities. A portion of the conference will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care. The conference is primarily geared towards health care providers, researchers and educators but people with lived experience of ME/CFS and all others with an interest are welcomed to attend as well.
2020 Atlantic Pain Conference now online
October 16, 2020

The 2020 Atlantic Pain Conference will be held online on October 16, 2020. The conference will provide an update on pain management while highlighting the importance of taking an interdisciplinary approach when providing care for people living with chronic pain. The conference is intended for physicians, nurses, physiotherapists, psychologists and all others with an interest in chronic pain. The conference is being offered at a reduced registration rate of $50 but people living with pain can attend for free by emailing [email protected].
Research opportunities
Survey to understand how COVID-19 is impacting youth with chronic pain

Researchers from The Hospital for Sick Children (SickKids) are interested in learning how COVID-19 has impacted youth living with chronic pain. Canadians aged 8 to 18 who live with chronic pain are invited to share their experiences through this short survey. Family members (e.g. parents, siblings) are also invited to participate.
Research study on long-term effects of medical cannabis to manage pain

The University Health Network is leading a first-of-its-kind clinical trial to learn more about the long-term effects of medical cannabis on managing chronic pain, sleep, anxiety and depression. Participants will be able to use a variety of genetically tested medical cannabis products and will be required to track their symptoms using questionnaires. The trial is open to all Canadians 19 years of age or older. Additional background information on the trial is available here.
Research opportunity: Virtual care options for youth with pain and families

A new project funded by the Canadian Institutes of Health Research (CIHR) aims to identify what virtual care options exist to support youth with pain and their families during the COVID-19 pandemic and beyond. Researchers are specifically looking for youth 15 to 25 years of age who live with pain and parents of a child aged 8 to 18 who lives with pain. The total expected time commitment is two hours and participants will be compensated for their time. Anyone interested is encouraged to contact the main researcher, Kathryn Birnie, at [email protected].
Study: Investigating falls among people with chronic pain

If you are an adult living with chronic pain and have experienced a fall in the past year, a research team at Queen's University would like to learn more about your experience through this short survey.
In the news
Canadian Health Survey on Children and Youth, 2019
The results of a recent Canadian Health Survey on Children and Youth by Statistics Canada suggest that "youth with recurrent pain or sleeping difficulties are more likely to report fair or poor mental health."
What the COVID-19 pandemic can teach us about trust
The author of this article shares how, especially during the current COVID-19 pandemic, trust plays a major role in the daily lives of people with chronic illness.
Chronic pain, vulnerability and human spirit while living under the umbrella of COVID-19
 This article highlights the added challenges people living with chronic pain are currently experiencing during the COVID-19 pandemic, with the goal of bringing awareness to how policymakers and health systems can strengthen care for people with chronic conditions during public health emergencies.
We need culturally appropriate health care for black Canadians
This article raises an important discussion around the need for more representation of black Canadians in health care settings in order to address the health-related issues black communities often face, including systemic racism, distrust of the health system, higher rates of poverty and more.
Opinion: What to do when COVID doesn't go away
The author this article uses his experience with chronic illness to offer some words of encouragement to anyone experiencing lasting symptoms and/or complications from COVID-19.
Is exercise the new snake oil? Or just a dirty word?
Dr. Bronnie Lennox Thompson shines light on how people in pain may be more likely to benefit from movement that is personally gratifying (e.g. gardening, dancing, hiking) as opposed to a standard exercise prescription.
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