Oncology researcher is building partnerships with cancer agencies to empower patients and transform research
As Program Director of the Global Oncology Program in the Gerald Bronfman Department of Oncology, I would like to highlight the work one of one of our members who has been at the forefront of embracing patient partnerships and involvement in research: Julia Valdemarin Burnier, PhD, Associate Professor in the Gerald Bronfman Department of Oncology and the Department of Pathology, as well as Scientist at the Research Institute of the McGill University Health Network (The Institute).
The Global Oncology Program is deeply committed to addressing the inequities, improving access, advancing quality and saving lives. By building strong, meaningful, and sustainable partnerships with patients and cancer agencies, we are innovating, building capacity, and transforming the delivery of cancer care locally and globally. This is easier said than done. Engaging cancer patients in research requires a purposeful and meaningful shift in ways of thinking, conducting and disseminating research. If executed well, patients can help set the research agendas, catalyze efforts, and bring monumental transformations. However, structures and supports are needed to help scientists make this desired change. Partnering with cancer agencies offers powerful way forward.
That’s how it all started for Julia Burnier. Back in 2019, she accepted an invitation to serve as a science partner for a cancer patient from Kimberly Badovinac, Program Manager of the Canadian Cancer Research Alliance at the Canadian Partnership Against Cancer. “I thought it sounded like an interesting program and a great opportunity for me to help patients,” recalls Prof. Burnier. “But I never could have predicted that I would get much more out of the program than I could ever give.”
Ms. Badovinac manages the Patient Involvement in Cancer Research Program, known as PIP. The national program was created in 2017 to enhance the involvement of patients in cancer research. Since its inception, 75 patients have undergone training and been matched with science mentors, such as Prof. Burnier. There are three main objectives of the program (please see the chart below).
Objectives of patient involvement in PIP
- Promote the value of lived experience to the cancer researcher community by facilitating interactions between patient partners and researchers.
- Enhance participants’ knowledge about cancer research and providing experiential learning opportunities that prime participants for further research engagement
- Foster a supportive network of patient partners who share an interest in cancer research
Science partners are selected from among those who are participating in the Canadian Institutes of Health Research (CIHR) Institute of Cancer Research (ICR) Early Career Research program, which takes place within the Canadian Cancer Research Conference (CCRC). Ms. Badovinac carefully oversees the matching of researcher and patient partners, where possible according to mutual interests or for logistical reasons. For example, Prof. Burnier was matched with patients from Quebec in the 2019 program to offer them the option of speaking in French or English.
An online community was created at the suggestion of PIP participants. Every Tuesday, Ms. Badovinac distributes information on research advances and new opportunities for patient partners to get involved in research. For researchers, this serves as an excellent mechanism to reach out to a pool of trained patients eager to become involved. For patients, it’s an empowering way to contribute to research.
“Being a patient partner in cancer research has been an exciting and enriching experience thus far,” says participant Isabelle Allain-Labelle. “It has allowed me to see that my voice matters as a cancer survivor and to bond with other survivors and to feel empowered to share my story and my perspective to bring about positive change. I am very grateful for this opportunity and am looking forward to continuing to collaborate on various research projects.”
At PIP, Prof. Burnier quickly saw how valuable are patient partnerships – and how without them there are major gaps in how we conduct and disseminate our research. A rich exchange of knowledge and experiences began to unfold between her and her patient partners during the 2023 CCRC in Halifax.
“In conversations with the patient partners at the conference, it became clear that there is some very problematic language used in scientific disseminations, such as articles and presentations,” she says. “As scientists, we sometimes do not realize that the language we use can be very non-inclusive to those with lived experiences such as patients themselves and caregivers. For example, comments such as “the patient failed the treatment” are not only inaccurate, but also place blame on the patient… while it is in fact, the treatment – and not the patient – that failed.”
Prof. Burnier’s involvement in PIP has led to new areas of patient partnerships, including the creation of a patient/scientist partnership working group that meets online every two weeks. Their exchange of ideas led to a grant application to continue their research on patient partnership and language, as well as a manuscript (co-written by patients and scientists) which is under review.
“As a patient diagnosed with uveal melanoma, it has been very meaningful to participate in this project which will have profound impacts on cancer and on so many other diseases,” says patient partner Jennifer Auchinleck. “I feel that patient-scientist collaboration is a powerful approach that brings significant positive impacts for all participants and for cancer research, and I really appreciate the opportunity to be a part of it.”
Several of the patient partners are also engaged in other areas of Prof. Burnier’s research, such as her newly created Network on Circulating Biomarkers at The Institute, whose launch last September was attended by patient partners Jennifer Coish, Ms. Allain-Labelle, and Ms. Auchinleck (see photo above). “Allowing our voices to be heard in a way that benefits the research that is being done in the field is a game changer,” says Ms. Coish. “Patient partners bring the expertise of real life lived experience to the table. This gives clinicians and researchers yet another tool to shape better outcomes for all.”
The importance of remunerating the valuable time of patient partners has become central to true patient partnership, but requires the need to leverage different funding mechanisms. Researchers, including Prof. Burnier, are now including compensation in project budgets, and this has proven successful. With more agencies recognizing the transformative role a patient can play in research, more opportunities are unfolding to offer remuneration via research grants, philanthropy, and hospital budgets.
Get involved!
- To learn more about Prof. Burnier’s research on liquid biopsy, please visit Julia Burnier Lab or contact her at julia.burnier@mcgill.ca.
- If you are interested in promoting your research opportunity through the PIP participant forum, please contact, Ms. Kimberly Badovinac at: Kimberly.Badovinac@partnershipagainstcancer.ca
- If you are interested in the collective efforts of the Global Oncology Program, Gerald Bronfman Department of Oncology, please contact Program Director Argerie Tsimicalis, RN, PhD (argerie.tsimicalis@mcgill.ca) or Coordinator Gayle Shinder, PhD (gayle.shinder@mcgill.ca).