The CERTAIN Back Pain Research Patient Advisory Group has met regularly since 2014. This group was formed because multiple research projects on back pain were being conducted by CERTAIN partner researchers who wanted to include patient viewpoints in their work.
Currently, 4 ongoing research projects work with Back Pain Research Patient Advisors. The Patient Advisory Group provides feedback on project progress, advises on how to improve study processes, and assists investigators in developing plans for dissemination of study results. Additionally, this group partners with researchers to develop new research projects.
The Back Pain Patient Advisory Group has contributed in significant ways to the success of back pain research. Some of the contributions of the group include:
- Advising on how to improve reports given to participants in the Long Term Outcomes of Lumbar Epidural Steroid Injections for Spinal Stenosis (LESS) study resulted in reports that were easier to read and contributed to a high satisfaction rate with the reports among those who received them.
- Sharing questions that remain about LESS study results based on patient advisors' own personal experiences has led to developing new research projects that are currently in the funding application phase, including studies on exercise programs, cognitive behavioral therapies, and other more non-traditional treatment plans that are of great interest to patients.
- Providing input on study materials in a PCORI-funded project of involving patients in identifying and prioritizing research topics in back pain led to materials that were easier to read and understand and contributed to a nearly 40% response rate to our first survey. Typically, a good response rate for this type of data collection is around 20%.
Do you have personal experience with back pain, or experience caring for someone with back pain? We need your expertise! Contact us to learn how you can get involved.