This is an excerpt of a blog originally published on Evidently Cochrane.
Asking people with lived experience to participate in research is essential if research is to be relevant and useful. @sally_crowe describes what happened at a workshop to discuss which treatment outcomes matter most to people living with chronic pelvic pain.
During a sultry June weekend in 2015, forty three people came together to talk about what matters to people living with chronic pelvic pain. I co-facilitated the workshop, which was taking place at the second World Congress on Abdominal and Chronic Pelvic Pain (CPP) in Nice, France. Of the 43 participants, 21 were women living with chronic pelvic pain (with different causes and conditions), 17 were health professionals and/or researchers, and helping with the practicalities were two volunteers from the UK Pelvic Pain Support Network. There were three observers from the workshop sponsor, Grunenthal. The workshop was the co-production of the International Pelvic Pain Partnership (details at the end of this blog) and enthusiastic clinician researchers from Edinburgh, Birmingham, South Tees and Oxford, and everyone was there in a voluntary capacity.