By Heather Blumentha
Back in 2018, BioCanRx Scientific Director John Bell admitted that, in the beginning, he didn’t really appreciate the full potential of engaging patients. However, observing the interactions of patients and research trainees at BioCanRx’s annual scientific meeting convinced him of just how important that engagement is.
“I was hopeful that patients might benefit from these interactions,” he said at the time. “But it was very gratifying to find that the post-docs and students got as much out of it as the patients.”
Dr. Bell was speaking about The Learning Institute, which brings together patients and researchers to engage in interactive and collaborative knowledge exchange activities at the annual Summit for Cancer Immunotherapy. Their collaboration results in a Dissemination Report that captures key take-away messages and reflections from the summit and serves as a way to share this information with BioCanRx, the oncology communities and the general public.
The Learning Institute resulted in BioCanRx receiving the inaugural European Society for Gene and Cell Therapy’s Public and Patient Engagement Award, in 2017.
Catherine Wilhelmy is co-chair of the Learning Institute working group this year, as well as the coordinator of patient partnerships at the Centre de recherche du Centre hospitalier universitaire Sherbrooke. She has cared for both her mother and her husband throughout their cancer journeys, as well as herself having triple negative breast cancer, a particularly hard-to-treat form of the disease. All of these experiences have given her a strong sense of the importance of patients having a voice not only in their care, but in the research enterprise as well.
“Meeting with a person with cancer can make a researcher aware of things in a much more practical way,” she says. “Patients bring a fresh and different perspective.”
She has nothing but praise for BioCanRx’s efforts at patient engagement.
“Being willing to invite patients to a scientific conference and provide them with the supports they need to understand the proceedings and interact with participants is a gift,” she says. “It creates a magical place to share what patient partnerships can be – it gives a boost to everyone!”
“Illness robs you of your power,” she adds. “Patient partnerships are empowering.”
Patient partners also play an integral role in BioCanRx-funded projects, including clinical trials. Nineteen BioCanRx-funded projects have included patients, with 20 patient partners involved in those projects, including the first trial of made-in-Canada CAR-T therapy.
Dr. Manoj Lalu of the Ottawa Hospital Research Institute (OHRI) played a key role in ensuring that patient perspectives were included in that trial. And, he says, without that patient involvement, quality of life would never have been included as an outcome. As well, the lived experiences of patients helped inform the economic analyses that were done as part of the project.
Dr. Lalu is a strong believer in the importance of patient participation in research along the continuum from the laboratory bench to the clinic.
“I don’t think it’s ever too early to have patients involved,” he says. And, in fact, he and his team at OHRI are developing resources for researchers seeking to involve patients at the pre-clinical stage, something that is less intuitive.
As for clinical settings, “involving patients is more intuitive and common, as these are the environments they are naturally familiar with.”
There are several ingredients that are needed to make patient participation in research successful, he says:
First, both patients and researchers need to bring open minds to the table in order to take advantage of the opportunity for mutual learning.
Second, both sides need a clear understanding of expectations and to be flexible about what those are. Dr. Lalu recommends getting these expectations on paper from the beginning.
Finally, infrastructure matters; there needs to be institutional supports and resources applied to patient involvement.
Patient involvement in clinical trials can help in several areas, among them patient recruitment and retention. One of the areas Dr. Lalu notes that patient involvement can be particularly helpful is with patient-facing materials, including making consent documents easier to understand – a need Ms. Wilhelmy can attest to. She participated in two clinical trials as part of her cancer treatment and in both cases, she says, the consent forms were “incomprehensible.”
Apart from improvements to specific trials and other research projects, one of the most important benefits of patient engagement, Dr. Lalu say, is the opportunity for trainees and junior staff to interact with patients, noting that it’s an opportunity to influence the next generation of researchers.
Today, when patient engagement is considered an integral part of the research process, it is easy to forget just how revolutionary BioCanRx’s patient engagement initiatives were at the time they began. But it is these early initiatives that have led to recognition of the vital role patients can play in improving the research process and outcomes.
