Arthritis At Home Episode 163 – Understanding pain in scleroderma: A patient-researcher partnership
In this episode of Arthritis At Home, Ellen Wang, Programs Coordinator, Arthritis Consumer Experts, speaks to Dr. Brett Thombs, Professor, Faculty of Medicine, McGill University, and Director, Scleroderma Patient-centered Intervention Network (SPIN). Recently, his team was obtained an Ignite Grant from the Arthritis Society for the project titled “A Scleroderma Patient-centered Intervention Network patient-researcher partnership to understand pain sources, patterns, and barriers to effective management in systemic sclerosis.”
They discuss the importance of integrating the patient voice at all stages of research and the benefits of doing so. Dr. Thombs explains that patients have the choice of how they want to be involved and no formal experience is needed.
Additional learning resources
- Scleroderma Patient-centered Intervention Network (SPIN)
- Ignite Innovation Grants Summaries
- Canadian Institute of Health Information: Patient-reported outcome measures (PROMs)