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The importance of patient engagement in research

Panelists at the TFRI-BC Node Day discussion on patient engagement in research.
Second from right: Donna White, Provincial Director of the Terry Fox Foundation’s BC and Yukon office. Photo credit: BC Cancer Research Agency


As Provincial Director of the Terry Fox Foundation’s BC and Yukon office, I recently had a wonderful opportunity to participate in a panel discussing “patient engagement in research”, at the TFRI-BC Node Research Day in Vancouver.

It was an insightful day, hearing the latest updates from the many different research projects that our foundation funds. I understand that it is uncommon for patients and fundraisers to play direct roles in these research meetings, where the focus is on the details of research – data, experimental methods, results and problems. Similarly, in my day-to-day working world I don’t often come into contact with the cancer patients and researchers we work so hard to support. My team and I deal with our details – event logistics, volunteer recruitment, developing new fundraising ideas and continuing to share the legacy left to us by Terry Fox.

There are many people that make cancer research work, including clinicians, researchers and fundraisers, all focused on the most important people in the process – the patients.

As fundraisers, we see challenges and opportunities and know the importance of patient engagement and advocacy. Patients are our stories.

Many of our volunteers and participants are cancer survivors or the families and friends of those no longer with us. It can often be a challenge to show someone the amazing work that is happening in the world of cancer research when their hearts are heavy with loss. They are all engaged in Terry's dream and have a desire to learn and to help to make a difference and just as Terry did, to see the hurting that is cancer stop. They are keen to see what is happening in cancer research and stand proud in the funds they raise, knowing that they are in the hands of the very best and the brightest in the research community.

We see so much passion in those we call Terry's Team Members. They are cancer survivors and share their stories and journey with this disease. They come out to the Terry Fox Run each year in a beautiful red t-shirt we give them to recognize them as the faces of hope that they are. They are the proof positive that cancer research is indeed hard at work and making a difference in the lives of so many, just as they did for me 16 years ago as I too am a cancer survivor.

People continue to raise funds for Terry's dream and they are the critical element in the cancer research process. Without those people that believe in Terry and the foundation that bears his name, there would be no research.

Our panel discussion and the questions raised emphasized to me that we all have our part to play in the cancer challenge. I’m certain that by all of us – researchers, clinicians, fundraisers and patients – coming together we will bring Terry’s dream to reality.

Donna White
Provincial Director for the BC/Yukon Terry Fox Foundation

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