The key role of patient Involvement in the Development of Core Outcome sets in prostate cancer

Katharina Beyer, Sara MacLennan, Lisa Moris, Michael Lardas, Michael Lardas, Ken Mastris, Gary Hooker, Robert Greene , Erik Briers, Muhammad Imran Omar, Jemma Healey, Sheela Tripathee, Giorgio Gandaglia, Lionne DF Venderbos, Emma Jane Smith, J Bjorkqvist, Alex Asiimwe, Johannes Huberm, Monique J Roobol, Jihong ZongAnders Bjartell, James N'Dow, Alberto Brigantii, Steven MacLennan, Mieke Van Hemelrijck, The PIONEER Consortium

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Patient involvement is becoming increasingly important in medical research. Patients should be involved not only as participants in research which may impact their care, as the recipients of that care and any associated harms. They should also be involved as research collaborators in the prioritisation of what are important questions from the patient perspective, designing the research, and the ways in which is it most appropriate to involve patients in the research.
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
Original languageEnglish
JournalEuropean Urology Focus
Publication statusAccepted/In press - 1 Oct 2021


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