Quebec Patient Engagement Update
Patients Interested in Arthritis Research (PIRA), Arthritis Research Canada’s Quebec-based patient group, is now seven years old and continues to partner with researchers to give patients a voice in arthritis research.
A New Member
Recently, Mame Awa Ndiaye, joined the group as a new member. She holds two masters degrees: one in the sociology of work and organizations from the University Gaston Berger of Saint-Louis in Senegal and another in communications from the University of Rennes 2 in France.
Mame Awa has rheumatoid arthritis and is a very active patient partner in patient and public engagement in research. She is currently a research professional at the Primary Care Research Center at Laval University. She works with Dr. Marie-Pierre Gagnon, a researcher in population health and best practices in health and Co-Head of the Quebec Patient-Oriented Research Strategy Support Unit.
The unit strives to support patient partners and research teams and help them collaborate on research projects related to health care and services. It also provides them with the tools and resources needed to run research projects efficiently and helps with patient partner recruitment and training.
Mame Awa is a major asset to PIRA for researchers, as she can highlight cultural changes necessary for shared decision-making in research. She can also inspire other patients to get involved in research.
Mame Awa Ndiaye and Dr. Marie-Pierre Gagnon presented their work at the PIRA meeting in June. As in previous meetings, several PIRA members and members of the CHU de Québec-UL research center were present (rheumatologists, researchers, clinicians, basic researchers, students and research professionals).
The Patient’s Choice
PIRA has now aligned itself with Arthritis Research Canada to establish a procedure for collaboration between patients and researchers. Patients can choose the research projects that interest them the most and work with principal investigators in a variety of ways. For example, during the grant application period, patient partners are involved in the writing of a ‘lay summary,’ which must be understandable to the general public, while clearly describing the scientific objectives of the project.
On September 7th, PIRA will hold its third annual PIRA Walk to raise greater awareness and funds to support arthritis research in Quebec. This year, the event will take place on the Laval University campus and the CHU de Quebec- UL research center will help promote it.
A New Research Initiative
In January 2019, Laval University recognized a new research center: ARThrite (Arthritis Research Treatment), which brings together 20 researchers working in the field of inflammation and arthritic diseases.
The center’s co-directors are Dr. Paul Fortin, Senior Scientist of Rheumatology and Epidemiology at Arthritis Research Canada, rheumatologist and clinical researcher at the CHU de Québec -UL and Eric Boilard, researcher at the CHU de Québec-UL.
The launch of ARThrite took place on May 15 in the presence of several researchers – including Dr. Laëtitia Michou, a new Arthritis Research Canada research scientist – as well as students, members of the public and PIRA members.
At ARThrite’s first general meeting, a PIRA member will be appointed and will be part of the ARThrite organization chart. The chosen representative will attend regular meetings, the general assembly and the scientific day. He or she will have an impact on strategic choices, as well as the center’s scientific activities.
Student training is at the heart of Laval University’s requirements for its research centers. Therefore, students in the field of inflammation and arthritic diseases will also have a unique opportunity to rub shoulders with patients who are members of PIRA. Patients play an important role in research, but they can also help to train the next generation of researchers to collaborate with patients.