Ten years ago, Clinical Trials Ontario (CTO) set out to answer a simple question: how can the people most affected by clinical trials help shape the clinical trials ecosystem itself?
The mid-2010s marked a significant shift in healthcare and health research across Canada and within Ontario, where the concept of patient engagement (patients as partners rather than participants) was emerging. National and provincial initiatives, including CIHR’s Strategy for Patient-Oriented Research, Ontario’s Patients First agenda, and the province’s newly minted Patient Ombudsman Office, began changing expectations around the inclusion of patients’ perspectives.
CTO committed to meaningfully engaging patients and the public with clinical trials. We started small, bringing together an eight-person group of patients and caregivers to provide advice and feedback on specific initiatives – then called the Patient and Public Advisory Group. What followed was a decade of learning, adapting, and growing alongside the people who generously shared their lived experiences.
Now a decade later, that Patient and Public Advisory Group has evolved into the CTO College of Lived Experience, a diverse community of more than twenty patients, caregivers, parents and public members who contribute to a wide range of CTO initiatives and activities. Together, we’ve co-developed resources, informed organizational initiatives, partnered with researchers and industry to support projects across the clinical trials community, and even co-created a research question and conducted research to find the answer. This work has always been centered on ensuring that the voices and priorities of those most impacted by research are reflected in the work being done.
We’re excited to share a new publication in BMJ Open that reflects on this journey with patient and public partners we have worked with: “Partnering with patients and the public in the clinical trials ecosystem: a decade of lessons learned and shared.” The paper explores how CTO’s approach to patient and public engagement has evolved over the past decade, the lessons we’ve learned, and practical strategies that other organizations can adapt for their own context.
A central learning has been that meaningful engagement is about more than inviting people to share feedback. It requires creating the conditions for partnership to thrive. Some of the lessons that emerged from our work include the importance of dedicating resources to engagement, offering flexible ways to participate, communicating clearly about expectations, and closing the loop by showing people how their contributions have informed decisions and shaped outcomes. We’ve also learned that bringing together a diverse group of patients, caregivers, and public members creates space for richer conversations and perspectives that can strengthen projects, programs, and organizational initiatives. Transitioning from the Patient and Public Advisory Group to the College of Lived Experience, we also found that a larger group enables people to choose their level of engagement, taking a leading role on a project when it suits them, and taking a step back when life and its pressures need priority focus or when they’re not interested in a project. CTO is currently in the process of expanding the College of Lived Experience to add additional members, following an open call in the spring of 2026.
CTO’s lessons have led to tangible results. Members of the College of Lived Experience have helped shape public-facing resources, informed clinical trial tools and communications, contributed to organizational initiatives and conferences, supported the work of external organizations, and even helped generate a survey about decentralized and hybrid trials that resulted in a research project and peer-reviewed publication co-authored by patient partners. Their contributions have challenged assumptions, identified opportunities for improvement, and helped ensure that clinical trials reflect the needs and experiences of the people they are intended to serve.
We also recognize that the publication itself, co-authored with nine patient partners from CTO’s College of Lived Experience, represents a milestone in the credibility and meaningful inclusion of lived and living experiences as a cornerstone of research evidence and advancement. We are grateful to the authors who gave their time to pen this paper.
If you’re considering how patient and public partners could be involved in your own work, whether you’re launching a research project, developing a program, reviewing communications materials, or shaping organizational priorities, we’d be happy to connect. Through the College of Lived Experience, CTO has and will continue helping researchers, institutions, health charities and organizations design meaningful engagement opportunities and build confidence in partnering with patients and the public.
We invite you to read the full publication and explore what partnering with patients and the public could look like in your own work. And if you have any questions at all, please reach out.