OICR Acting President Dr. Christine Williams discusses the rise of patient partnership in cancer research and how it can ensure cancer care meets the needs of patients.
World Cancer Day has me reflecting on one of the most important changes I’ve seen during my career in cancer research and the unprecedented opportunity it has created.
The theme for this year’s event is “United by Unique” and it’s part of a three-year campaign calling for more people-centred cancer care, where each patient’s unique needs and experiences shape the care they receive.
As a scientist and research leader, this reminded me of the scientific community’s journey to bring the voice of patients into the research process. Thanks to the vision and determination of patient advocates, we’ve made major strides to involve patients and caregivers in the planning and execution of cancer research, and the impact has been transformative.
And so for World Cancer Day, with the global cancer community focused on making cancer care more person-centred, I’m excited about the role that person-centred research can play in achieving that goal.
While research sometimes has a reputation of being disconnected from the patient — ‘the lab’ is often seen as distant from ‘the bedside’ — people have always been the heart of cancer research. This is especially true in clinical trials, where participants receive a new tool or treatment as part of their care, and their experiences and feedback help shape the future of that intervention.
Yet there’s a difference between participating in research and doing research. To be truly patient-centred, research needs to be designed and carried out alongside the people it ultimately aims to help. Cancer research should be with patients, and not merely about them.
The formalized involvement of patients in research has its origins in the UK in the mid 1990s, following decades of advocacy from patients demanding a seat at the table. Pioneering organizations like the Canadian Cancer Society started integrating patients into research processes shortly thereafter, and the 2011 publication of CIHR’s Canada’s Strategy for Patient-Oriented Research set the tone for greater partnership between researchers and patients in Canada.
At OICR, patient partnership has become a fundamental part of our research prioritization, design and delivery processes. We now have patients and their family members contributing at all levels of the organization, providing insights that go far beyond what can be learned with a tissue sample and test tube. I’m proud to say that OICR’s new Strategic Plan 2026-2031 was created alongside cancer patients and their families, and I believe it sets us on a path to person-centred research.
But our efforts to be more person-centred in our research won’t mean much if those innovations don’t reach the healthcare system. One of the pillars of our new Strategic Plan is to tighten the connection between cancer discovery and patient care in Ontario. By working with Ontario Health to identify joint priorities across the province’s research and health systems, we will ensure the day-to-day experiences of patients feed directly into the research we do. In turn, that will help us to deliver innovations that meet patients’ individual needs.
With the direct involvement of patients and a close partnership with the health system, we have a tremendous opportunity to make cancer care more person-centred. As one of our amazing patient partners, Carla-Bossart Pletzer, put it:
“Future generations may well look back on this moment as the turning point when research became truly for everyone, by everyone,” she told a meeting of OICR’s scientific leadership last year.
Now it’s on us as a cancer research community to capitalize on this moment and honour the lived experiences of patients like Carla by engaging them as our partners in research, leading to better science and better outcomes.