AYA CAN - Canadian Cancer Advocacy’s Post

A lot of elements that make for good engagement of people with lived experience (PWLE) are very personalized, including: relationship building and maintenance between the PWLE and research team, setting expectations and working practices. Much of my time involves working with researchers to plan out and help them run effective PWLE engagement strategies that are mutually beneficial to both the research team and the PWLE involved. But for effective PWLE engagement on an institutional level, we also have to make sure that needed processes, paperwork and forms are accessible and most importantly, easy to use! For example, institutional paperwork often has language which is not particularly accessible and/or an abundance of legal and technical terminology. Therefore as the amount, types and depth of PWLE engagement we do increases rapidly, a less-obvious part of my job is working with colleagues from several different departments on an institutional level to make sure the internal processes we use are designed with PWLE in mind. Today, after consultations with many of our researchers and PWLE that they engage with and substantial work from legal colleagues, we launched a new contracting form at Women's College Hospital specifically designed to formalize a research engagement between PWLE and research teams. The agreement acts as an important reference point for both PWLE and researchers as to the responsibilities of each party, expected involvement of the PWLE on the specific project and formalizes aspects like financial compensation including amount and payment frequency. Highlights: - We removed over 50% of the words from the non-specific template agreement which was previously used for PWLEs. - We removed some parts entirely that were not relevant for engagements with PWLE. - We removed as much legal language as possible and where legal terms were required, we replaced them with simpler language with the same meaning. - We added in fillable options to integrate providing compensation to the PWLE into the agreement for full transparency. This may seem like a less-exciting thing to post about than stories about the essential contributions of PWLE in research, but excessive red-tape and processes not suitable for PWLE engagement in institutions can severely limit researchers who want to engage PWLE - hampering research teams and limiting the impact and applicability of the work. We must always work on removing and reducing these barriers to PWLE engagement, alongside building, maintaining and strengthening working relationships between PWLE and researchers.

Watch how Dylan Buskermolen turns his Hodgkin’s lymphoma diagnosis into an opportunity to help others impacted by cancer. 👏 Whether you’ve also been impacted by the disease or just want to help those who are, you can make a difference too. Get involved and be a voice for change today: https://bit.ly/4d4Y0in We’re calling out to everyone, everywhere to come together and be a voice for change in cancer care. The more voices we have, the more change we can make – because it takes a society to take on cancer. 💛 #WorldLymphomaAwarenessDay 🎥: Glass Horse Productions

The Ottawa Hospital (TOH) is developing an Adolescent and Young Adult (AYA) cancer program for the National Capital Region. To ensure that the program positively impacts all patients, TOH is committed to engaging extensively with their patient community and their caregivers during the program's design phase. To support this, TOH has created a survey and is seeking input from members of the AYA community who have accessed or are currently accessing their services. Who: AYA cancer patients (ages 15-39), survivors, and their caregivers/loved ones Length: No more than 10 minutes Focus: A broad range of questions centred on three key program components: mental health, fertility, and sexual health Call to Action: If you are an AYA patient, survivor, or caregiver/loved one who has accessed or is currently accessing TOH’s services for cancer care, please consider taking the time to complete this survey. Your input represents a significant opportunity to directly influence a program that will benefit many AYA cancer patients in the future. Link: https://lnkd.in/e8vNV_Dt If you have any questions, don't hesitate to reach out to Sarah Cleyn ([email protected]) Please feel free to share this survey to reach the widest audience possible.

We’re proud to announce the 2023 recipients of our most prestigious annual awards. This year’s Canadian Cancer Society Awards for Excellence in Cancer Research recognize the outstanding achievements of 8 leading cancer researchers in Canada. Since 1993, these annual awards have recognized some of the most talented research leaders and innovators who have helped advance cancer research and improve outcomes for people with cancer. Watch the recipients talk about what this award means to them. Congratulations to all recipients! Read more about their research: https://lnkd.in/gy5QQ7Jx

Note to media (and everyone else)... Please. Stop. Doing. This. This woman did not "lose a battle" to cancer. She died of cancer. When a person dies from a heart attack, do we say "He lost his battle with heart disease" ? When a person dies from diabetes, do we say "She lost her battle with diabetes" ? When a person dies from a stroke, do we say, "He lost his battle with a narrowing blood vessel" ? No we don't. Let me repeat one of my favorite quotes, from the late great Stuart Scott: "When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live." And here's another favorite quote, from the late great Norm McDonald: “I’m not a doctor, but I’m pretty sure if you die, the cancer dies at the same time. That’s not a loss. That’s a draw.”

Do you work with young people with cancer? Multidisciplinary experts from the Victorian Adolescent & Young Adult Cancer Service, based at Peter Mac, are launching free courses to share their unique expertise to assist in navigating the best course of care for your patients. Read more and enrol: https://lnkd.in/gJs-RyGA

We have a new website! 🎉 ACCESS is a national research network connecting and empowering diverse people and organizations to conduct research, change policy, and develop new tools to ensure better lives for children who experience cancer in Canada. To support this unique collective of scientists, healthcare providers, partner organizations, advocates, patients, and their families, ACCESS has developed a comprehensive website that will act as a virtual ‘community hub’. Here, you can find the latest #pediatric cancer research, clinical advancements, educational resources, events, and stories from the community. Join our mission to advance childhood cancer experience, science, and survivorship. #WeAreACCESS Link: www.accessforkidscancer.ca

“My husband and I had been trying to expand our family for a while. I was eager to have another child, despite the weird little pains that had been cropping up since the birth of our first son. When I did get pregnant, though, I miscarried at 11 weeks. It was horrible. My body was slow to heal, but eventually I was ready to try again. We went to the fertility clinic here in Manitoba. There’s only one. They scheduled a laparoscopic procedure to look inside my abdomen and see if anything unusual was going on in there. Something unusual was. It was cancer. And it was everywhere. At first they thought it was ovarian cancer. Then gastrointestinal cancer. Then everyone was sure it was colon cancer. But the colonoscopy came up clear. I remember at one point a resident told me I was ‘a very interesting case.’ I told him I didn’t even know what that meant. It turns out, it’s not a good thing. I ended up starting chemotherapy still without a clear answer as to what type of cancer I had. And after that it was surgery. Basically all the ectomies. They took out my gallbladder, my spleen, my omentum, and my appendix. And they performed a radical hysterectomy. At no point did I feel like I was involved in my own care plan. It was only after testing all the bits they’d pulled out of me that they were able to determine it had been appendix cancer all along. From pregnancy, to miscarriage, to stage four cancer, to having my reproductive system removed, it happened so quickly, and without anyone asking me how I felt or what I wanted. I know my case was unique and urgent, and I’m glad I got the treatment I needed. But it could have been done with so much more compassion. And I know others are having the same awful experience. After all, every cancer case is unique. My son is nine now and, as he grew, he had so many questions. When he asked me why he didn’t have a brother or sister, I took great care to explain to him why mom wasn’t able to have any more kids. And now, because he understands, he’s able to be happy as an only child. I only wish anyone had taken similar care to help me understand what was happening to me in my cancer journey.” Chantale Winnipeg, MB Appendix cancer With AYA CAN - Canadian Cancer Advocacy