In 2022 we published an article called ‘Getting it wrong most of the time? Comparing trialists’ choice of primary outcome with what patients and health professionals want‘. It looked at the outcomes selected in 44 breast cancer and kidney trials and asked patients and health professionals how they would rank those outcomes in terms of importance. We were particularly interested in the most important – the primary outcome. In summary, from the perspective of patients and health professionals, trial teams chose the wrong primary outcome 72% of the time.
A public contributor on twitter asked if any of the 44 trials involved patients and publics in selecting their outcomes. Perhaps those that did were more likely to have a primary outcome that matched what patients and health professionals wanted?
It was a good idea and an article written together with the public contributor who suggested the study has just been published. In summary, none one of the 44 trial teams involved patients and the public in choosing outcomes.
Plenty of room to do better in other words.