A patient partner is someone who has experience with healthcare services, usually an expert of their own condition and who collaborates with businesses, healthcare institutions, organizations or researchers, to make sure there is “nothing about us without us.”
It’s also sharing your experiential knowledge to improve a project or future healthcare workers’ education.
It can take the form of a one-hour focus group to give your opinion on an upcoming product, take part in all the steps of a research project as a member of the team (co-researcher, co-author), meet medicine residents to answer their questions, participate in the creation of an education program, and much more!
I am extremely lucky to have all these opportunities to improve things!
Participating in various projects is great, since it allows me to learn about many different topics! It’s never boring, since there are never two days alike!
A few project examples:
- Co-creation and review of continuous education modules and co-creation of a digital toolkit on opioids, with the Association of Faculties of Medicine of Canada (AFMC)
- Co-creation and review of continuous education modules in genetics, with the Réseau québécois de diagnostic moléculaire [Québec Network of Molecular Diagnosis] (RQDM)
- Co-creation of a survey, participation in data analysis and in writing academic papers as a member of the Groupe de travail sur l’éthique et les maladies rare [Ethics in Rare Diseases Working Group], with Ariane Quintal of the Institut de recherche clinique de Montréal [Montreal Clinical Research Institution] (IRCM) and as a member of the DIGICIT research project‘s advisory committee on contact notification technology in a pandemic, with Esli Osmanlliu and Jesseca Paquette of the CHUM Research Centre (CR-CHUM)
- Member of the advisory committee of the Réseau québécois des maladies complexes [Québec Complex Illness Network] and its excellence centre, at the Centre hospitalier universitaire de Montréal [Montreal University Hospital Centre] (CHUM)
- Tracing patient and member of the patient partners’ panel of the Direction de la qualité, de l’évaluation, de la performance et de l’éthique [Quality, Evaluation, Performance and Ethics Department] (DQEPE), at the CHUM
- Review of the world musculoskeletal strategy report, with the Global Alliance for Musculoskeletal Health (G-MUSC) and Curtin University
- Review of the website and participation in the living evidence review on the COVID-19 vaccine rollout, with the COVID-END project of McMaster University
- Co-creation of a roadmap on the learning healthcare system (LHS), with the Centre d’excellence sur le partenariat avec les patients et le public [Patient Partners and Public Excellence Centre] (CEPPP)
- Co-creation of a white paper on the social acceptability of healthcare data use, with the Health Data Research Network Canada and the Unité de soutien SSA du Québec [Québec LHS Support Unit]
- Member of the telehealth tactical committee of the Centre intégré universitaire de santé et de services sociaux de l’Ouest-de-l’Île de Montréal [Montreal’s West Island Integrated University Health and Social Services Centre] (CIUSSS-ODIM)
- Participation in the education program of the University of Montreal’s Faculty of Medicine, case history workshops and health science collaboration (CSS) class, with the Patient partners’ office
- Participation in Global Gene’s rare diseases Compassion Program, paired with medical students