Roadmap for partnering with patients, families, and caregivers in a Learning Health System

The purpose of this tool is to explain the roles of users and their families in a LHS and to describe how these people can, individually and collectively, contribute to its many dimensions.

How can we co-construct a learning health system with users and their families? How does this partnership unfold at different stages of a learning cycle?

This roadmap was co-designed with 37 patients, family members, and caregivers. It aims to clarify the roles of patients, family members, and caregivers within an LHS and describe how they can, individually and collectively, contribute to its multiple dimensions. At each step of the learning cycle, discover, from the perspective of users and close partners

  1. Roles
  2. Winning conditions
  3. Challenge

The roadmap was created by the Centre of Excellence on Partnership with Patients and the Public and supported by the Unité de soutien SSA Québec

“Simply put, the ultimate goal of an LHS should be to provide better care by putting people at the heart of health.”


  • Myriam Fournier-Tombs
  • Sylvain Bédard

Scientific direction

  • Audrey L’Espérance
  • Matthew Menear

Research assistance

• Marie-Anne Filion

Patient Partner advisor

  • Christian Chabot

Graphic design

  • Christine St-Onge

Administrative management

  • Catherine Purenne

We would like to express our deepest gratitude to the 37 patients, family members, and caregivers who collectively participated in a dozen hours of co-design workshops, as well as in the editing and verification of the contents of this tool:

  • Kelvin Arroyo
  • Christiane Asselin
  • Sylvie Beaulieu
  • Sylvain Bédard
  • René Benoît
  • Pierre-Charles Bertrand
  • Colette Bérubé
  • Janie Boulianne Gref
  • Pierre Cardinal
  • Christian Chabot
  • Denis Cormier-Piché
  • Madeleine Côté
  • Simon Courtemanche
  • Clara Dallaire
  • Annie Descoteaux
  • Marie-Anne Filion
  • Rona Fleming
  • André Gaudreau
  • Annie-Danielle Grenier
  • Debby J-Lessard
  • Daniel Landry
  • Micheline Laverdure
  • Catherine Lemyze
  • Juliette Lévesque
  • Louis Lochhead
  • Virgil Luca
  • Sonia Lussier
  • Vincent Montpetit
  • Lise Pelletier
  • Marie-Dominique Poirier
  • Guy Poulin
  • Francine Roberge
  • Ghislaine Rouly
  • Bernard Saulnier
  • Lise Viens
  • Catherine Wilhelmy

The term patient refers here to any person who has used or may need health and social services, whether currently ill or not. While respectful towards the nuances between terms, in this document the term patient replaces any other similar and commonly used term, such as service user, client, consumer, resident, etc.

(1) Ministère de la Santé et des Services sociaux.(2018). Cadre de référence de l’approche de partenariat entre les usagers, leurs proches et les acteurs en santé et en services sociaux.

A partnership approach relies on strong relationships between patients, families, caregivers and other actors in the health and social services system. These relationships are nurtured by the complementarity and sharing of each partner’s knowledge, as well as by the ways in which different partners work together. Such relationships fosters a sense of mutual trust and a shared recognition of the importance of each partner’s expertise, including the expertise and experiential knowledge of patients, families, and caregivers. (1)

(2) IBID

Lived experience refers to all the knowledge and skills that patients have or will acquire during their experiences of living with illness, which enable them to act as partners at different levels: in the health care and social services system, in research and in the training of professionals and students. Patients can share their lived experience through:

  • being partners in their own care;
  • mobilizing and sharing their experiences as a patient partner;
  • resource;
  • being transformational leaders at the systems level (2)

(3) Direction collaboration et partenariat patient. (2015). Terminologie de la pratique collaborative et du partenariat patient en santé et services sociaux. Université de Montréal.

A learning health system (LHS) is a dynamic ecosystem of care in which scientific, social, cultural, technological, political, and ethical dimensions are aligned and allow for continuous cycles of learning between practice, data, and knowledge in the system to be integrated into current practice, thereby improving the value of health care.

More specifically, learning health systems emphasize four functions that are essential to continuous learning in a system: (1) data generation, management, and sharing, (2) the relationship between patients/families/caregivers, researchers, clinicians, and decision-makers, (3) engagement, and (4) the development of a culture of continuous learning, which requires coordinated actions by the entire health system. (3)

(4) Unité de soutien au système de santé apprenant Québec. (2022).

Value-based healthcare is defined as achieving the best possible health outcomes or the best possible care at the lowest cost. (4)

(5) Menear M., Blanchette, MA., Demers-Payette, O., Roy, D. (2019) A framework for value-creating learning health systems. Health Research Policy and Systems.

Roadmap for partnering with patients, families, and caregivers in a Learning Health System

The following document is a tool that we invite you to use and share. Available in a clickable PDF format, the Roadmap for Partnering with patients, families, and caregivers in a Learning Health System includes interactive fields that allow you to navigate it in an intuitive and fun way.

  • Patient-Public-Organizational Partnership