Public and patient involvement: a survey on knowledge, experience and opinions among researchers within a precision oncology European project

作者：Paola Mosconi, Cinzia Colombo, Pasquale Paletta, Laura Gangeri, Chiara Pellegrini, Elena Garralda, Rosalba Miceli, Cinzia Brunelli, Irene Braña, Jordi Rodón, Guillermo Villacampa, Anna Pedrola, Rodrigo Dienstmann, Bianca Pont, Julia Lostes, Alejandro Piris, Elena Chavarria, Xenia Villalobos, Berta Colldeforns, Raquel Pérez-López, Paolo Nucíforo, David Tamborero, Janne Lehtiö, Ali Razzak, Maria Pernemalm, Markus Jonsson, Maan Haj Rachid, Jorrit Boekel, Luigi De Petris, Christina von Gertten, Helena Bäckvall, Maria Von Witting, Xiaobing He, Richard D. Baird, Thomas Jaki, Duncan I. Jodrell, Gary J. Doherty, Simon Pacey, Rebecca Bradley, Ferida Gallagher, Ramona Woitek, Emma Beddowes, Shubha Anand, Katherine Honan, Haiyan Zheng, Pavel Mozgunov, Nikos Demetris, Kate Donoghue, Kenneth B. Seamon, Lorena Escudero, Melanie Burton, Otso Arponen, Stefan Fröhling, Richard F. Schlenk, Petra Oberrauch, Anett Molnár, M Störzel, Klaus Maier‐Hein, Oliver Sedlaczek, Heinz‐Peter Schlemmer, Peter Horak, Marco Nolden, Simon Kreutzfeldt, Michael Schlander, Philipp Schader, Muchadeyi Muchandifung, Jennifer Wessely, Frans L. Opdam, Regina G. H. Beets‐Tan, Zuhir Bodalal, Ruud Weijer, Giovanni Apolone, Giovanni Scoazec, Claudio Vernieri, Rita Leporati, Luca Agnelli, Andrea Vingiani, Mikol Antioco, Silvia Damian, Matteo Duca, Filippo de Braud, Andrea Villa, Sara Alfieri, A Forest, Laura Lauden, Marc Deloger, Y. Loriot, Emma Pailler, Paul Fitzpatrick, André Freitas, Ciara Dwan, Donna M. Graham, Hannah Frost, Leanna Goodwin, Alex Bogatu, Oskar Wysocki, Magdalena Wysocka, Sjoerd van Hagen, Bas Leenknegt, Sander Y.A. Rodenburg, Elena García García, Pim van Nierop, Mirko Orsini, Marco Monari, Marco Pacchioni, Emma Mescoli, Enrico Calanchi · 发表于：BMC Cancer · 年份：2023 · DOI：10.1186/s12885-023-11262-x · 被引用次数：9 · 研究领域：Mental Health and Patient Involvement、Patient-Provider Communication in Healthcare、Social Media in Health Education

BACKGROUND: Patient and Public Involvement (PPI) is slowly but steadily being implemented in all phases of clinical research. As part of the European project "Building Data Rich Clinical Trials" a survey was launched to investigate the knowledge, experiences and opinions on this topic of clinicians and researchers from seven European clinical and non-clinical centers (Cancer Core Europe). METHODS: An invitation to take part in a cross-sectional web survey was sent to 199 clinicians and researchers working in the field of precision oncology. The questionnaire was developed ad hoc because no existing questionnaires met the purpose of this study. The analysis takes account of whether respondents had experience on PPI or not. RESULTS: On a total of 101 respondents, this survey reveals that 76.2% of them knew about PPI before answering the questionnaire, 54.5% had experience in the previous five years and 86.1% were interested in a training course on this topic. PPI knowledge grew together with career seniority (peak of 86.5% for established career professionals), while the group most interested in a course was the early-career professionals (100.0%). Finally, the majority of respondents stated they had no training or education on PPI (67.3% of experienced and 82.6% of not-experienced respondents). CONCLUSIONS: This survey shows that most cancer researchers knew the term PPI, even if only a little more than half of them had any relative experience. Opinions on PPI benefits, negati...