You are an expert in living with disease. Since its creation, the Unit has placed patient-oriented research (POR) at the centre of its initiatives. POR allows patients to participate in research and health care and social services care as co-researchers, partners in their care.
Your role is essential for health care to migrate to a Learning Health System.
Patient-oriented research (POR)
Patient/public research partner guide
This guide is primarily for patients and their families, caregivers and members of the public interested in patient engagement in research.
- The foundations and benchmarks of POR
- Guidelines of patient/public partnership
- Effective partnership prerequisites
- Recruitment and training of patients and patient partners
What does it mean to be a patient partner?
Alexandre Grégoire, who has diabetes and cystic fibrosis, shares his perspectives about being a patient partner and how this individual experience of care has given him insight that he can now apply to research. Have you or a loved one lived through COVID-19 or do you have any other experience of what it’s like to live with the illness? Your knowledge may be highly beneficial for the world of research.
Being a caregiver and contributing to research: how and why?
Are you a caregiver? Would you like to know if the person you are taking care of or you yourself could be asked to participate in a research project? You may be able to contribute to this type of project. Learn how, why and what is involved from screenwriter Louis-Philippe Rivard, caregiver for his partner Josée Boudreault, and Dr. Sophie Éthier, a professor specializing in caregiving.
The mission of the Experiences magazine is to create a space for free expression by gathering, in various forms, testimonies of lived experiences with regard to the disease and care. It is published in french by the Québec community of patient partners in research.
The Understanding Research video series is available to help you understand various concepts such as types of research and how to read a scientific article, to name a few.
Would you like to join the patient community ” expériences “?
The patient community ” expériences ” includes patients, citizens, family caregivers and various members of the Quebec health and social services network, including researchers. There are no selection criteria for joining the community. You have experiences to share and they can make a difference in the future of our health system. Being a member of the experience community allows you, depending on your level of comfort, to
- be involved in the governance and strategy of the patient partnership
- be part of research teams
This initiative comes from the Partnership Axis of the Unité de soutien SSA Québec and the Centre of Excellence in Partnership with Patients and the Public (CEPPP).
Step 1: Create your account on espaceproximite.ca
Step 2: Apply to join the patient community ” expériences “
Our communities of practice
Veronique Sabourin, patient partner
I had a life expectancy of 18 years, and now I’m 45. I’ve been receiving care since childhood. I was involved long before patient partnership was recognized and was given a name. It came naturally to me. I don’t like to complain, I like to find solutions! This led to my interest in research and co-construction. I joined the demonstration project because our contributions are necessary. Patients can’t exist without health care professionals and the opposite is also true too. This is precisely what I want: to demonstrate the relevance and added value of patient partnership.
- Strategy for Patient-Oriented Research (SPOR) of the CIHRD
- What is a Learning Health System (LHS)?
- Boîte à outil en évaluation de l’engagement patient et public
- Centre of Excellence on Partnership with Patients and the Public (CEPPP)
- Direction Collaboration et partenariat patient of Université de Montréal
- Le guide des patient(e)s-citoyen(ne)s partenaires en recherche
- Le mandat d’implication des patient(s) partenaire en recherche
- Principes directeurs de dédommagement financier pour la recherche en partenariat avec les patient(e)s et le public
- Magazine de la communauté de patientes et patients en recherche Expériences.