RESEARCH. PATIENTS. PUBLIC.
A PRIVILEGED CONVERSATION
In recent years, patients have become important clinician partners, helping to improve the quality of care and services. Their experience and the knowledge they gain during their hospital experience are increasingly being recognized. But can this unique expertise, which extends far beyond the lines of health care services, be distilled very early on in a research project?
For Alexandre Grégoire, a patient‑partner and project manager at the Centre of Excellence on Partnership with Patients and the Public (CEPPP), the answer is “yes.” At a public event, he reminded the health professionals and research teams in attendance that the overall vision of the patient‑partner movement, of which the CEPPP is a global leader, is to bridge the gap between research and health care.
At the CHUM, this vision is very much alive and some research units have understood the advantages of such a partnership for biomedical, clinical or health care research. An example: Dr. Marie‑Pascale Pomey, a CRCHUM researcher, and Olivier Fortin, a patient‑partner and research assistant, launched PAROLE‑CEVARMU, a peer‑support research project for CHUM patients that have sustained a traumatic upper limb amputation or revascularization. This project is currently being evaluated in a hospital setting.
Of course, to successfully and quickly transition from basic to clinical research, the engagement of both patients and clinicians is needed. But it’s also important to recruit the right patient‑partner for the research project. For Dr. Pomey, Olivier Fortin was the ideal candidate.
An international summit or nothing!
In May 2019, the CEPPP organized the 1st International Summit on Patient and Public Partnership, which brought together some hundred people, including public and patient engagement specialists, patients, decision makers and Canadian, European and American research teams. Their goal was to identify ways of allowing patient and public partnerships to transform health and social service systems. Dr. Tessa Richards, the editor of the British Medical Journal, described this summit as the “Davos for Patient and Public Involvement”, confirming the CRCHUM’s position as a world leader in this field.
Science that Gets People Talking
Launched in April 2019 by the CEPPP and the CRCHUM, the HumaniSciences talks, intended for the general public and co‑hosted by a panel of patients and scientists, provide, four to five times a year, a space for reflecting about and discussing science themes and are broadcast on the internet. In one year, these evening events attracted large audiences to learn about topics such as HIV, organ donations, chronic pain and the opioid crisis, osteoarthritis of the knee and cystic fibrosis.