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21. Patient co-leadership in times of turmoil: Learnings from Quebec

The COVID-19 pandemic placed incredible strain on communities and on healthcare systems across the globe, leaving most countries in a precarious and vulnerable state. Using a case study, this panel aims to demonstrate how patient and citizen leaders can and should be engaged at various levels of government during a crisis to inform rapidly evolving decisions and policies, and ensure that solutions proposed are catering to the needs of patients, citizens, and communities.


This panel draws on the experience of the Conseil des Citoyens Partenaires en Santé (CoCiPs), a group formed in the early stages of the pandemic by the Centre of Excellence on Partnership with Patients and the Public (CEPPP) to bring together experienced patient and citizen partners in Quebec. Embodying the philosophy and concept of patient partnership which recognizes experiential knowledge of patients, caregivers, and citizens as complementary expertise to that of researchers, healthcare professionals and deciders, the CoCiPs has been mobilized bi-monthly for the past 22 months by a multitude of decision-making entities - including several departments of the Quebec Ministry of Health - to weigh in on complex and ethically challenging issues that our health system is currently faced with. 


Mobilizing patient and citizen partners at the governance level can: (1) restore confidence of citizens and communities/populations by allowing them to be involved in healthcare transformation; (2) identify key societal concerns, challenges, and unintended consequences of the pandemic on health and well-being; (3) co-construct solutions best tailored to the needs of populations by activating their experience and strengthening their capacity to provide and support health care and services; (4) empower citizens to allow for more prevention, greater autonomy in their health and care, and better navigation within health systems to be ready to face future pandemics and challenges in the field of health.


In order for our society and healthcare systems to successfully address and embrace the complex challenges of remodeling our systems during crises - persons with lived experience can and must be integrated as key stakeholders and recognized as active leaders of health systems transformation.

The pandemic revealed that patient and citizen partners with significant experience at the governance level can rapidly and efficiently mobilize their individual and collective experiential knowledge to address high-stakes issues in the area of acute and infectious disease. These leaders have a unique set of qualities including their ability to tolerate uncertainty, keep the focus on people, and co-build solutions with other health leaders.


In times of crises where health ecosystems need to respond rapidly and effectively, patient partnership has emerged as a powerful lever for health systems transformation towards a patient-driven system. While many view these changes as a challenge, it is also an incredible opportunity. Fostering different levels of patient and citizen leadership in health supports a culture change that focuses on relationships rather than regulation, and the development of a more sustainable health system by reducing our society’s sole dependency on institutions and policy-makers for solutions.



Myriam Fournier-Tombs - Partnership Network Lead, Centre of Excellence on Partnership with Patients and the Public (CEPPP)



Caroline Wong - Executive Co-director, Centre of Excellence on Partnership with Patients and the Public (CEPPP)

Vincent Dumez - Patient Co-director, Centre of Excellence on Partnership with Patients and the Public (CEPPP)

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