Patient partner engagement in research projects
The Patient Partner Advisory Group is at the heart of every CANSpine research project. Patient partner lived experiences and insights ensure CANSpine research is relevant, important and impactful. Since the first meeting in November 2021, patient partner insights and collaboration have been pivotal, helping to shape:
- 12 PhD student research projects
- 11 faculty-led projects from the stage of the research project idea
- 2 large-scale CANSpine research projects, called COMPASS and SPINA
COMPASS (COMPrehensive ASessment of Spinal pain) research project
Over 18 months of consultation, the Patient Partner Advisory Group was essential to developing the COMPASS project. Patient partner feedback ensures that COMPASS collects the information that matters most to patients, streamlines data collection, and creates a high-quality experience for participants. Patient partners refined the one-hour physical examination process to reduce participant burden, led communication training for PhD students, and participated in practice data collection sessions to provide real-time feedback to improve. As a result, there is strong participant engagement in the COMPASS project, safe data collection, and a positive experience for patient participants.
PPAG involvement in developing the COMPASS project
SPINA Rehabilitation Registry
SPINA is the first international registry dedicated to rehabilitation for musculoskeletal spinal problems. Over 18 months of collaboration, the Patient Partner Advisory Group played a vital role in shaping the SPINA registry. Patient partner feedback guided each stage of SPINA development, including sharing real-world experiences to inform survey questions, testing drafts of SPINA surveys, and refining the structure of SPINA. By contributing insights on survey design, participant burden, and communication, PPAG ensured that the SPINA registry remains responsive to patient needs and experiences. As a result, SPINA reflects both rigorous research standards and the lived realities of those who experience spinal pain.
PPAG involvement in developing the SPINA registry
