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Faith Hope & Lungs: Jill's Journey following a lung cancer diagnosis

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Multidisciplinary Teams with Thoughtful Authentic Survivor Engagement

Posted by Jill Hamer-Wilson

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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 Research Scientist <–> 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.

AACR19

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.

https://www.nature.com/articles/s41568-022-00468-z.epdf?sharing_token=dghrm7yT-YR9yqtnA1EFW9RgN0jAjWel9jnR3ZoTv0Nai9XtKfIPqc4uBEw7MOqQht7CyRjGHEfNivYlwZ73oFoSyPWmWt18gSXyTxHjpbPKnkQr0AmSqQKRueVbaPiEDE2y4QtH9Kv3RXxVeUM25Tn_cSY7aPVhvplFThN1Bzg%3D&fbclid=IwAR1HLQi5ZSkupWV5BBV34qLaqMvXfncorwGMOuQVhs5GU68JN1LfP86mohEhttps://www.nature.com/articles/s41568-022-00468-z.epdf?sharing_token=dghrm7yT-YR9yqtnA1EFW9RgN0jAjWel9jnR3ZoTv0Nai9XtKfIPqc4uBEw7MOqQht7CyRjGHEfNivYlwZ73oFoSyPWmWt18gSXyTxHjpbPKnkQr0AmSqQKRueVbaPiEDE2y4QtH9Kv3RXxVeUM25Tn_cSY7aPVhvplFThN1Bzg%3D&fbclid=IwAR1HLQi5ZSkupWV5BBV34qLaqMvXfncorwGMOuQVhs5GU68JN1LfP86mohE

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.

Diane Manii MSW and I presented about the Ottawa Lung Cancer Support Group at IPOS19
Our article about the conference

Research matters, and it is best when multidisciplinary teams work together, with thoughtful, authentic survivors’ voices clearly heard. Public and patient engagement matters!

Dr. Vicky Forster and I at the Toronto CCS offices October 2019

Tagged AACR, cancer, Cancer research, caregivers, CCTG, Lung Cancer, Lung Cancer Research, multidisciplinary team, OICR, patient engagement, public engagement, research, ResearchMatters, survivor input, survivors, Team, Vicky Forster

Mar·25

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“Through the Valley”

… is from Psalm 23, and especially meaningful to me as I go through my ever-changing lung cancer journey. I was diagnosed in December 2013, when my children were 6, 10 and 12. I’m so very thankful to be alive, and doing much better now than I was in early days. We thank God and lung cancer research, and our tremendous support community, including great care at our cancer centre.

These days much of my time is invested  in lung cancer advocacy, which is authentically reflected in this blog.

I began this blog when newly diagnosed and undergoing  chemotherapy. You can read about early days of chemotherapy if you are interested.

I started this blog with hope that it would help communicate with the loads of lovely, supportive people who care so much and gently ask for updates. We are so grateful for the amazing people who are surrounding us, helping us, praying for us, cheering us on and walking with us – whether from near or far.

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