What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!
Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong
Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!
Wouldn’t it be good if everyone affected by cancer had a support group to be part of?
In the past couple of days I’ve been part of meetings with two teams that I love working with, the Ontario Institute for Cancer Research (OICR) Patient and Family Advisory Council (PFAC) and the Canadian Cancer Trials Group (CCTG) Patient Representative Committee. Both are made up of brilliant, skilled, dedicated people who have experience with cancer, whether directly or as a care giver, and work hard to advance research while representing the broader cancer community. It’s exciting to be together, speaking with passion and knowledge about improving research for people affected by cancer. These people are dynamos, and together as teams, cancer world changers!
Here are some quick numbers about the OICR:
21,000+ Ontario patients recruited to OICR-supported clinical trials since 2012
2,076 highly qualified personnel across Ontario enhanced their knowledge and skills by participating in OICR-supported projects
590+ collaborations with institutes around the world
… and the CCTG:
Partnerships: 600+ trials in 40+ countries
IND (Investigational New Drug) Program: 38+ years experience in 205+ drug trials
Tissue Bank: 300,000+ samples from 120+ trials
Network: 2100+ investigators at 85+ sites
Research is best when multidisciplinary teams work well together. Research is best when thoughtful survivors, patients, caregivers, family members and caring friends have a real role, participating at every stage in the process. When we form inclusive teams which embrace the authentic voices of people affected by cancer who genuinely care, we work to ensure that genuine cancer patient/survivor perspective is represented and research is better.
The American Association for Cancer ResearchScientist <–> Survivor Program has been inspiring powerful partnerships between scientists and survivors for decades, and accelerating research. How grateful I am for the opportunity to participate in person at the Annual Meeting in Atlanta in 2019. These experiences educate us, connect us, and open doors for further advocacy opportunities.
Fellow cancer advocate Dr. Vicky Forster’s important article, What cancer survivors can teach cancer researchers, was published this week. It speaks about the importance of cancer survivors’ engagement in every stage of the research process. Vicky brings her valuable perspective as both childhood cancer survivor and current cancer researcher.
Vicky and I have enjoyed some energizing conversations! We first met over lunch at the International Psychosocial Oncology Society (IPOS) conference in 2019, when I presented with Diane Manii MSW about our Ottawa lung cancer support group, disseminated information to community members, and influenced professionals to do more for those affected by lung cancer. This was the first IPOS conference to be “patients/survivors included”, and five of us earned scholarships. Together we five also wrote an article about the experience. A gifted thinker and communicator, Vicky was the driving force and major contributor to that article. She also did a TED talk! Here’s the link to her TED talk.
Research matters, and it is best when multidisciplinary teams work together, with thoughtful, authentic survivors’ voices clearly heard. Public and patient engagement matters!