McGill researcher shares 2019 CCRC experience

Live 2019

The 5th Canadian Cancer Research Conference (CCRC) organized by the Canadian Cancer Research Alliance  (CCRA) took place from November 3 to 5 at the Shaw Centre in Ottawa. A meeting with almost 1000 participants, the CCRC served as a platform for new scientific research and was attended by scientists, clinicians, trainees as well as patients, caregivers and patient advocates. With 600 posters, four plenary sessions, and over 100 breakout talks, participants had the opportunity to learn about Canada’s finest research in cancer, with themes ranging from immunotherapy, aging, cancer stem cells, proteomics, and clinical trial developments.

Dr. Julia V Burnier, a newly recruited researcher at the Research Institute of the McGill University Health Centre , and Assistant Professor in the Departments of Oncology and Pathology at McGill University’s Faculty of Medicine,  was awarded a CIHR-OICR award to participate in the CCRC as well as in the Early Career Investigator (ECI) meeting, funded by the CIHR, OICR and Prostate Canada. The ECI meeting, held before the CCRC, included over 50 young scientists from across Canada. Included in the program were talks from established scientists who gave advice on how to build a lab and program. Participants also heard from patients and patient advocates who spoke of their experience and outlook on the future of cancer research. “It was an eye-opening experience to hear patients and advocates speak about what research means to them,” says Dr. Burnier. “Science is their hope, whether for their own disease or for the future generation of patients. It was humbling but also inspiring and it made me realize just how important our work is.”

The CCRC conference provided three more days filled with excellent scientific talks, dedicated time for networking and social events. However, according to Dr. Burnier, the highlight of the meeting was not just the science or networking, but rather another patient-centric program. “I was given the privilege to participate in the Patient Involvement in Cancer Research Program (PIP), which paired patients and patient advocates with scholars during the CCRC meeting.”

Supported by the Fonds du Recherche en Santé du Quebec (represented at the meeting by Dr. Anne-Marie Mes-Masson from the Centre hospitalier de l’Université de Montréal (CHUM)), each scholar was paired with 1-2 patients during the 3-day conference to explain the science of what they would be hearing during the conference. When asked why patient involvement is important. Dr. Mes-Masson said “We would be the only industry to not consult with the end user before using a product. One of the biggest advantages they bring is an experience that we as scientists don’t have and they challenge us to think differently about each scientific problem.”

Dr. Burnier was paired with Ms. Sylvie Halde and Ms. Lucie Piché, two cancer survivors who have dedicated much of their time to being advocates for patient involvement in cancer research. Both Ms. Halde and Ms. Piché co-chaired different sessions during the conference.

Sylvie Halde is a lawyer in maritime law and works for the Department of Justice Canada. She is a survivor of ovarian cancer, which was discovered by chance 11 years ago at an early stage while trying to have a family.  “I am here because ovarian cancer is a silent killer and not enough woman survive long enough to speak to it, as a grateful survivor and ex-participant in a clinical research, I have to give back. For patients, researchers and their researches mean HOPE and as the patients are the ultimate beneficiary, it is important that a two-ways dialogue be established. The increase of patient participation in clinical trials is one of the goals of my attendance at the conference,” she explains. “This said, doctors and researchers need to be more convincing in their approach in order to get the most patients participating in their trials. As well, patients should feel that there are real benefits for them to participate and that their participation will enhance their health care and the health care of next generation. The more patients participate, stronger are the trials, better are the advancements of science.”

Lucie Piché spent 30 years building her career in the field of communications, as a journalist, in press relations, as a manager, and as a strategic consultant. As a two-time survivor of breast cancer (2004 and 2013), she has become involved in many types of activities to help improve patient care. Since 2005, in addition to organizing and participating (with the Institut du cancer de Montréal), in a number of fundraising activities for research on gynecologic cancers, she was recruited as a Patient Partner by the CHUM and invited to become a member of multiple panels, projects and committees dedicated to improving patient care. In 2013, she became the first to be recruited in the Patient Partnership Program of the Faculty of Medicine at Université de Montréal. Since then, she has served as assistant teacher and mentor for medical students, as well as a coach for other patients. The goal of this program is to convey the patient experience to health care providers, in an effort to help transform the healthcare process.

“Throughout all the activities that I have been involved with, my goal has been to act as the voice of other patients, to help improve the health care system, to provide the best care, to develop tools to raise money for cancer research, and to bring awareness for the importance of funding research for cancer. As an active Patient Partner, I try to become a partner in co-building health care, research and education.”

Dr. Burnier says, “This is not an experience I will forget. Patient advocates can be a powerful partner in research and we can gain a lot from them. They’ve taken a devastating experience and turned it into something positive.”

Beyond the serious topics of the weekend conference, Dr. Burnier notes that there was much fun and laughter shared. “It was a pleasure to get to know Lucie and Sylvie, as well as the other patients and scientist partners. We all quickly became friends, and at the end of the day we are all working towards a common goal – better and more effective treatment for cancer patients, and hopefully a cure one day”.

The next CCRC conference will be held in Halifax in November 2021, and will again have a focus on patient advocacy.

 

November 11 2019

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