Are you familiar with the “Expériences” healthcare partner community?

“Experiences” is a community initiated and led by patients, service users, their loved ones, and citizen partners. It brings together people who are interested in and involved in partnerships within the healthcare system.

Co-leaders: Catherine Wilhelmy and Karina Prévost

Executive Committee: Catherine Wilhelmy, Karina Prévost, Louis Lochhead, Samira Amil, and Zamzam Akbaraly

Members of Expériences are involved in the community at various levels of participation: the Executive Board, the Assembly, and the “Carrefour”.

The Executive’s role encompasses three aspects: administrative, strategic, and operational. It is responsible for directing and overseeing activities, keeping the organization’s mission up to date, and ensuring that its actions align with the guidelines of Unité de soutien SSA Québec and its partners. The Executive Board, composed of five community members, proposes strategic directions to the Assembly and sets priorities in its annual work plan based on available resources.

The Assembly of Expériences is composed of a small number of partners, generally about twenty people. This group is formed to ensure optimal diversity among its members, both geographically (provincially) and in terms of their lived experiences. It is a community of practice that plays a reflective, advisory, and decision-making role.

Members come from a variety of backgrounds:

The Expériences Community Hub is made up of partners, whether or not they are patients. These individuals are registered with our various communication networks as well as our portal. They are interested in learning and getting involved through partnerships. All of these individuals receive our communications and are invited to our webinars and forums. They may also be contacted to participate in more targeted partnership activities, depending on their availability and interest.

The Experiences Community traces its origins to 2017, within the Unité de soutien SSA Québec (Quebec’s SPOR support unit) during the first phase of funding from the Canadian Institutes of Health Research (CIHR), as part of projects supported by the Partnership Track and the Centre d’excellence sur le partenariat avec les patients et le public (CEPPP).

Its first fifteen members, drawn from diverse backgrounds and different regions of Quebec, share a deep conviction: experiential knowledge is essential to the quality, relevance, and equity of health research. The tools, training, and knowledge developed during this initial phase laid the solid foundation on which the practice still rests today. They also contributed to the emergence of credible, structured patient leadership, paving the way for the creation of a community now recognized as a key player in health partnerships in Quebec.

The group realizes that, in order to support the transformation of the system as a whole, it is necessary to include all forms of partnership within the network and to incorporate them into the transformation of the network into a learning health system— with and for patients, service users, their loved ones, and citizen partners—who will eventually be referred to as “Health Partners.”

The community has chosen to open its ranks to all healthcare partners involved in the five main areas of partnership: research, education, governance, care and services, and partnerships with communities.

The goal is clear: to enable all health care partners to share their experiences and knowledge in order to build a shared understanding of partnership at the system level.

It is in this spirit of openness that the community has chosen its new name: “Expériences” (experiences in French). A name that evokes the richness and power of lived experiences, the diversity of life paths, the importance of cross-disciplinary knowledge, and the value of lessons learned from human experience in health partnerships.

Seeking to establish its own capacity for action, the group submitted a funding request to the Unité de soutien SSA Québec in order to strengthen its internal organization and begin developing a structured program of collective projects. The request was approved and marked a decisive turning point.

Expériences has become the first community of healthcare partners in Quebec to break free from professional oversight and govern itself, set its own priorities, manage its budget, and coordinate its activities.

Thanks to its strong organizational structure, the Experiences Community now has nearly 300 members, 22 of whom serve on its Assembly. This unprecedented level of engagement has enabled healthcare partners to play an active role in shaping the evolution of our healthcare ecosystem.

For example:

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In the wake of this recognition, Expériences led the drafting and publication of a Position Statement on Health Partnerships—a collaborative effort involving more than 50 contributors from diverse backgrounds, without whom this work would not have been possible.

This document also breaks new ground with a detail that carries significant symbolic weight: for the first time, the partners themselves are defining the priorities to be addressed and the structure of the content, and are approving the various suggestions, modifications, and additions to the document. This task is usually reserved for professional staff, research teams, organizations, or institutions.

The Statement provides a detailed overview of the current state of partnership in Quebec and sets forth five key recommendations for strengthening and sustainably embedding partnership in practices, structures, and policies. It now serves as an important reference for organizations seeking to deepen their understanding of partnership.

The result of a collective effort, this document helps fuel the collective momentum aimed at making partnership a natural part of the organizational culture and a true driver of transformation in the health care system.