Patients drive policy change
SPOR network’s patient partners share knowledge and lived experience to translate research into health policies that improve the management of chronic pain for Canadians
If people experience pain that persists for more than six months, it’s important for them not to ignore it. They’re experiencing chronic pain, and they need to get help.
Besides seeking care to manage their own condition, patients living with chronic pain can guide research priorities and co-lead research resulting in developments in clinical practice and health policy, which may benefit all people in Canada coping with the challenges of chronic pain.
That’s exactly what the patients engaged with the SPOR Chronic Pain Network are doing.
SPOR network unites multiple voices for positive change
As one of five SPOR chronic disease networks, the Chronic Pain Network was created in 2016 with the vision of leading transformational change in preclinical, behavioural, clinical, health services, population health and patient engagement research to help improve the understanding of chronic pain and its care.
The network’s goals include understanding pain better, identifying new and better treatments, and disseminating knowledge about pain. To achieve these goals, the network represents an unprecedented pan-Canadian collaboration involving patients, researchers, health care professionals, educators, Indigenous partners, industry, and government policy advisors. Besides supporting research, it helps researchers and clinicians translate their collaborative findings into the creation of strategies and policies that will facilitate access to optimal care for Canadians living with chronic pain.
“Pain clinicians have always needed to learn to listen to their patients to understand their pain,” said
Dr. Norm Buckley, Scientific Director of the Chronic Pain Network. “But now we have actually incorporated patients into the entire process of research so that we can identify the most important research priorities and then create next steps that will lead to results.”
Engaging patients in a dialogue for a national pain strategy
In December 2017, the McMaster Health Forum convened partners from across Canada, including representatives from the Chronic Pain Network, for a dialogue on the state of chronic pain in Canada . This work contributed to the development of a national pain strategy. Patient voices were vital in this discussion alongside those of researchers, pain specialists, health service providers, and government officials.
“As a steering committee member of the Chronic Pain Network, I participated in the dialogue to provide a voice for people with lived experience of pain,” said Lynn Cooper, who has lived with chronic pain ever since she suffered a workplace injury in 1986, which affected her back, shoulders, and neck.
“Our perspective is vital and must be included in discussions that will allow us to collectively move towards the development of any plans for positive change for the 1 in 5 Canadians who live with chronic pain.”
Creation of a Task Force to realize goals
The Forum’s comprehensive report , which was the outcome of more than ten years of advocacy by Canada’s pain community and organizations, led Health Canada to create the Canadian Pain Task Force in 2019, to identify areas of concern that governments should address regarding chronic pain. The Task Force included four members of the Chronic Pain Network – two researchers and two people with lived experience of chronic pain.
In the Action Plan for Pain in Canada, released in 2021, the Task Force identified collaborative research, data collection for effective treatments, and equitable access to health support as priorities for government action. The report also highlighted that people who use substances, such as opioids, often live with untreated chronic pain and a lack of appropriate health services contributes to their problem.
The response to the opioid crisis has created additional challenges for people living with chronic pain. It has limited patient access to the full range of treatment options. It has also stigmatized people who take opioids for pain management. Although there are harms associated with opioid use, including addiction and overdose, when patients are inappropriately withdrawn from prescription opioids, it puts them at risk of other harms such as exposure to an unsafe supply if they obtain opioids from illegal sources.
“The Task Force’s efforts give hope to those who live with chronic pain and feel hopeless,” said Linda Wilhelm, a member of the Task Force who is also President of the Canadian Arthritis Patients Alliance and has lived with rheumatoid arthritis for over 25 years. “Their work demonstrates how patients can receive better treatments for chronic pain if their voices are heard by researchers and clinicians.”
Promoting inclusivity among people living with chronic pain
The burden of chronic pain in Canada is not equitably distributed. The prevalence and severity of chronic pain is higher in populations affected by social inequities, racism, poverty, violence, or trauma. These populations also more frequently experience barriers to care.
In its report, the Task Force set a goal of achieving improved and equitable access to services for populations disproportionately impacted by pain. To help support this goal, the Chronic Pain Network is supporting research that will provide evidence to improve care for people living with chronic pain who may also experience social inequities.
For example, the Network supported a project led by Dr. Kenneth Craig at the University of British Columbia which is examining how Pain BC’s programs can be adapted to better reflect the diversity of people living with chronic pain and promote inclusivity. Dr. Craig and his team have conducted literature reviews and focus groups with LGBTQ2S individuals, refugees and newcomers, and Indigenous Peoples. Based on this work they are adapting Pain BC’s trainer manuals and self-management guidelines to capture the experiences and respond to the needs of people in those communities.
Pain-free next steps
With the momentum created by the Task Force, the Chronic Pain Network is now working with other stakeholder groups across the country, such as Pain BC, the Canadian Pain Care Forum and Association Québécoise de la Douleur Chronique, to further engage government representatives and break down barriers for those who live with chronic pain so that they can have better access to treatments.
“Engaging patients who have personal insights and expertise is critical in addressing today’s complex health problems,” said Dr. Karim Khan, Scientific Director of the CIHR Institute of Musculoskeletal Health and Arthritis. “Through the SPOR program and other initiatives, CIHR has become an international leader in promoting authentic patient engagement in research – working with patients and ensuring leadership by patients.”
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