I have just returned from “Cancer Conversations that Matter” – a national event sponsored by the Canadian Cancer Action Network (CCAN) and their collaborative partner, the Canadian Partnership Against Cancer (CPAC). The event was held in Toronto.
We were cancer patients, survivors, family members, patient advocacy groups, and agency representatives. We were brought together from across the county. The mandate? To discuss three key themes: 1) access to screening for low income populations; 2) collection and use of cancer data; and 3) the cancer-related needs of Canada’s aging population.
The forum used a “World Café” format to generate discussion among small groups. Each of the three issues above was explored via approximately 7 questions for each of the 7 tables in the room. Facilitators helped us to summarize the learning points.
For many of us, the day was a chance to bring forth advocacy issues in the Canadian context. Many of those issues are already well known by CCAN and CPAC – the lack of consistency in care across provinces, physician education regarding screening and survivorship issues, inadequate supports for caregivers…etc. The list goes on!
But for others, they day was an opportunity to set those issues in the context of lived experience. In one very telling exercise, the participants were asked to physically stand by the station in which they had the most difficulty on their personal journey. Virtually everyone went to stand by the “primary care” station. I was far from the only participant who had experienced horrific diagnostic error. What does that teach us?
For me, one of the most exciting aspects of the day was my own learning. I learned about extraordinary online resources, such as Canadian Virtual Hospice – a trove of culturally sensitive information for professionals, patients, and families for those undergoing palliation. They have 700 videos in virtually every language in the world! I was also very chuffed to learn about the online supports available through Young Adult Cancer Canada. Young people are going to change the cancer advocacy world, because they know how.
Events like this are a start. These kinds of Focus groups represent the beginning of our Speaking Truth to Power. Ideally, the insights are used to foster further dialogue with policymakers. For me, one of the key benefits of bringing cancer advocates together is the relational benefit: we learn, we teach, we inspire each other.
Kudos to CCAN and CPAC for tapping into that wellspring of passion for change.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her colorectal cancer.