The PIONEER Consortium, an international multi stakeholder collaboration lead by EAU has developed a Core Outcome Set (COS) for the localised and for the metastatic setting relevant to all stakeholders in particular patients. Throughout the work of PIONEER, patient representatives were involved in setting the research agenda, as collaborators, and a wider group of patients were involved as participants
in developing core outcomes sets - for instance in consensus meetings around choosing important outcomes and appropriate definitions. This publication showcases the process of the COS development and highlights the most important recommendations to ultimately inform the basis of future research projects cocreated between patients and other stakeholders.
With the shift in health care management towards patient centredness and shared decision making, it has become increasingly important to conduct research with patients as participants where their voice is central, and also to involve them in setting the research agenda to ensure it is relevant. An important opportunity to involve patients in the selection of outcomes for clinical trials, clinical audit and RealWorld Evidence (RWE), is to develop a Core Outcome Set (COS) which is relevant to all stakeholders. A COS is a minimum set of outc
|Journal||European Urology Focus|
|Publication status||Accepted/In press - 1 Oct 2021|