Three researchers who were strangers got together at a Hacking Health event and the concept of Queering Cancer was born. The idea of providing a space for LGBTQ2+ people affected by cancer to go was only a spark at the time, based on Meghan McInnis, Amanda Bolderston and Evan Taylor’s academic research in the area of health inequity for queer people.
There are plenty of great ideas that never take root. Queering Cancer has done more than take root - it has blossomed over this past year. This is a story about knowledge mobilization, which is really about connections, relationships and creativity.
They started with a twinkle in Meghan, Amanda and Evan’s eyes. The twinkle was enough to secure funding from the Canadian Institutes of Health Research, Institute of Gender and Health. They could have created something that languished in obscurity, as many research projects do. But they didn’t. They rolled up their sleeves and got to work, thinking outside the box how to bring their idea to life.
I had the tiniest role in Queering Cancer beyond cheerleading from the sidelines. Amanda and I met when I was an unhappy patient at the cancer hospital that she worked at. She knew that I co-owned a health communications company called Bird Communications with Mike, my partner/husband. We met her for coffee to chat about the group’s idea to move the concept of supporting people with cancer beyond the hallowed halls of research into real life. All I did was connect Amanda and Mike together – from there, things began to percolate.
The group was spread across the country, so there were many conference calls (this was pre-pandemic Zoom), where the researchers and the project manager, coordinator, graphic designer and website developer got to know each other. All three researchers had worked with patients in their research and were committed to having a patient partner involved with their work.
I had another connection, a dear friend, Mary Morgan, who I met on a cancer retreat. Mary was a pivotal part of the initial creative workshop with the researchers and Bird. She also reviewed materials for the project, approved the name Queering Cancer and wrote her own story for the website. Mary was never afraid to be outspoken (that’s one of things I loved about her) but she did not scare the research partners away. They kept their hearts open to her and appreciated her wisdom and ability to speak truth to power.
Queering Cancer was built upon Mary's experience about having cancer as a lesbian. (Note: Since patient engagement is my thing, you’d better believe that Mary was compensated for her time and treated respectfully through the whole process).
It took three years for Queering Cancer to bloom and they are still evolving. So often with research projects, an app is created or a website is put up and then that’s it. In contrast, Queering Cancer is alive and remains responsive to feedback from the LGBTQ2+ cancer community. For example, the patient forum never took off, so they’ve created a new Education page for health professionals who work with cancer patients instead.
I admire the group’s ability to say: “OK, this isn’t working; let’s listen to what people are saying and change things up.” I think that’s one of the reasons for their success. Other reasons? The foundation that was built from collaborating with Mary. The deep respect they had for her as a patient partner and person. Mary died in April 2021, and Amanda wrote a lovely tribute for her here.
Queering Cancer has been sustainable because they hired Kim Meeking, a social media guru, who has kept the site and social media accounts moving along. So many projects start up accounts, but rarely post on them. Kim makes sure Queering Cancer is very active – sharing news articles, updating followers, championing other sites – every few days. Amanda, Evan and Meghan have stepped out of their researcher comfort zone to become media spokespeople to amplify Queering Cancer.
This week is the one-year birthday for the Queering Cancer site. I have to say that one thing that health care is missing is FUN and HUMOUR and Queering Cancer does a fabulous job of offering resources that aren’t stale and boring. This week’s birthday goodie bag includes a book give-away and a poster download (check out their Instagram page) plus the launch of the new Education page on the website.
My friend and Queering Cancer’s patient partner Mary Morgan taught me this: Fight the good fight, but always do it with humour and joy. Queering Cancer is doing both. Happy Birthday to the whole Queering Cancer team, including those who are looking down on us from the stars. xo.