Are you interested in patient partnerships in health and social services? Did you know that patient partners can be involved in a number of areas? That the mandate of these people needs to be clarified so that they can be recruited according to context and needs? Indeed, such considerations are essential to ensure a satisfactory and conclusive experience for all parties.
In this article, we’ve tried to outline the areas in which patient partners can get involved, and to highlight some concrete examples from Québec!
This article is based on publications and interviews.
- Magazine expériences, “Le vécu de la maladie avec les soins”, issue 5, October 2023, p.27.
- Panel held on November 29, 2023, with the participation of the following patient partners: Casandra Poitras, Guy Poulin, Matthew Gariss and Sonia Lussier.
- Video clip COVID-19: “What it’s like to be a patient partner in a pandemic”, by Alexandre Grégoire, patient partner (in French).
- The Montreal model
Thanks to Catherine Wilhelmy and Karina Prévost, co-leaders of the Expériences patient-partner community, and Myriam Fournier-Tombs, coordinator of the Patient/Public/Organizational Partnership axis of the Unité de soutien SSA Québec, for their contribution to this article.
1 posture of co-construction, 5 areas of involvement, 1 continuum of commitment
The partnership between all the people and organizations working in or on the periphery of the network must include people who have experienced, either personally or as caregivers, a physical, mental or psychosocial health condition that gives them valuable experience, that of a transversal perspective of the system.
Patient partners can contribute their experiential knowledge to the health and social services network in the following areas: healthcare and services, political influence, training/information/teaching, research and governance.
Patient partners have one thing in common: they adopt a posture of co-construction. As such, they are required to participate in the continuous improvement of quality in facilities, while contributing directly to the search for solutions that benefit the greatest number of people. In so doing, they help to break down silos in the health and social services network, and put their experiential knowledge at the service of the healthcare system.
As suggested by the Montreal Patient Partner Model, patients and citizens can become involved in various healthcare sectors along a continuum of commitment that includes, in particular, partnership: information > consultation > collaboration > partnership.
“The patient was really involved in all stages of the project (…) We even wrote two scientific papers together where he was listed as one of the authors; he was really one of the researchers on the team.”
Free translation of an excerpt from: Magazine L’INTERACTION, Ordre des pharmaciens du Québec, Vol. 13 no. 02, Hiver 2024
Professor Marie-Pierre Gagnon
| Areas of patient-partner involvement | Contexts | Real cases |
|---|---|---|
| Governance | Contribute to strategic or steering committees People who choose to share their healthcare experience for the benefit of governance will act on a strategic level, investing their experience for the benefit of others. Their experience of the healthcare system will help them to reflect on the directions to be taken and the decisions to be made. Generally speaking, they are people who have experienced different trajectories of care or health services. | For the collective good, four patients with life-threatening illnesses helped develop the triage protocol for intensive care overflow during the COVID19 pandemic. Details (article in French) A patient partner is recruited to the transition committee preparing the merger of Santé Québec and making recommendations to the Ministry of Health and Social Services. Details Two citizens are co-holders of the Quebec Research Chair in Sustainable Health. Details |
| Healthcare and services | Contributes to clinical teams, trajectory improvement teams and continuous quality improvement teams. In our care and services, there are patient carers or family carers. These people are trained and put in touch with patients who are going through the same experience as the caregivers. They are there to offer support, direct patients to reliable information or help them navigate the system. Their role is well-defined, and in no way overlaps with that of clinicians. | Patient partners are part of a clinical team. As peer companions, they meet and talk confidentially with clinic patients. Peer companions also work on the streets to support people experiencing homelessness. Testimony video (in French) |
| Research | Contributes to research teams This partnership makes it possible to include people with a patient or family perspective on a health issue. Patient research partners are trained and can exert influence at all stages of a research project. | As part of a research project aimed at improving the trajectory of oncology care and services in Quebec, Oncopole has formed a committee of patient partners whose first mandate was to identify issues on which research teams are invited to work in close collaboration with patient partners. Details (in French) |
| Training/ information/ teaching | Contribute to the transfer of knowledge to the general public or to the training of professionals Some people choose to contribute to the training of future clinicians by sharing their experience or running workshops. Others play the role of communicators, helping to demystify illness, health, the system and so on. | Patient partners trained clinicians to support the implementation and deployment of the FMG Social Worker and Clinical Nurse Practice Guides. Details Patient partners take part in Université de Montréal courses, particularly in medicine and nursing, and co-construct teaching materials. Details (in French) |
| Political influence | Contributes to public debate to improve government policies on health and social services | A patient partner co-chairs the working group for the management of rare diseases (axis 3: promotion of research, innovation and data collection). One of the aims of this group is to maximize the impact of the Health and Social Services Ministry’s Action Plan on Rare Diseases. Details |
Would you like to work in partnership with a patient?
- Let yourself be guided by the Experiences patient community here.
- Consult the Unité de soutien SSA Québec’s Partnership toolbox here.
- Here are some ideas (in French) to help you think about including patient partners in your research. This page contains questions to help you prepare, as well as a commitment matrix to be completed with patients.
Read also
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Module 101 – Basis of patient partnership
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