Public and patient involvement: a survey on knowledge, experience and opinions among researchers within a precision oncology European project
Authors: Mosconi Paola , Colombo Cinzia , Paletta Pasquale , Gangeri Laura , Pellegrini Chiara , Garralda Elena , Miceli Rosalba , Brunelli Cinzia ,   on behalf of CEE_DART Consortium, Braña Irene , Rodon Jordi , Villacampa Guillermo , Pedrola Anna , Dienstmann Rodrigo , Pont Bianca , Lostes Júlia , Piris Alejandro , Chavarria Elena , Villalobos Xenia , Colldeforns Berta , Pérez-López Raquel , Nuciforo Paolo , Tamborero David , Lehtiö Janne , Razzak Ali , Pernemalm Maria , Jonsson Markus , Rachid Maan , Boekel Jorrit , de Petris Luigi , Von Gertten Christina , Bäckvall Helena , Von Witting Maria , He Xiaobing , Baird Richard , Jaki Thomas , Jodrell Duncan , Doherty Gary , Pacey Simon , Bradley Rebecca , Gallagher Ferida , Woitek Ramona , Beddowes Emma , Anand Shubha , Honan Katherine , Zheng Haiyan , Mozgunov Pavel , Demetris Nikos , Donoghue Kate , Seamon Kenneth , Escudero Lorena , Burton Melanie , Arponen Otso , Fröhling Stefan , Schlenk Richard , Oberrauch Petra , Molnar Anett , Störzel Manuel , Maier-Hein Klaus , Sedlaczek Oliver , Schlemmer Heinz-Peter , Horak Peter , Nolden Marco , Kreutzfeldt Simon , Schlander Michael , Schader Philipp , Muchandifung Muchadeyi , Wessely Jennifer , Opdam Frans , Beets-Tan Regina , Bodalal Zuhir , Weijer Ruud , Apolone Giovanni , Scoazec Giovanni , Vernieri Claudio , Leporati Rita , Agnelli Luca , Vingiani Andrea , Antioco Mikol , Damian Silvia , Duca Matteo , De Braud Filippo , Villa Andrea , Alfieri Sara , Forest Arnauld , Lauden Laura , Deloger Marc , Loriot Yohan , Pailler Emma , Fitzpatrick Paul , Freitas André , Dwan Ciara , Graham Donna , Frost Hannah , Goodwin Leanna , Bogatu Alex , Wysocki Oskar , Wysocka Magdalena , van Hagen Sjoerd , Leenknegt Bas , Rodenburg Sander , Garcia Elena , van Nierop Pim , Orsini Mirko , Monari Marco , Pacchioni Marco , Mescoli Emma , Calanchi Enrico 
Published: August 2023

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, negative effects, barriers and requirements differed between the groups of PPI experienced and not-experienced respondents, showing that experience itself can influence respondents’ opinions. Most of respondents reported they would prefer a training course based on practical rather than theoretical tools.