Laboratory of Medical Research and Consumer Involvement, Department of Medical Epidemiology, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Via Mario Negri 2, 20156, Milan, Milan, Italy.
Clinical Psychology Department, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
BMC Cancer. 2023 Aug 30;23(1):814. doi: 10.1186/s12885-023-11262-x.
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).
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.
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).
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.
患者和公众参与（PPI）正在缓慢但稳步地应用于临床研究的所有阶段。作为“构建数据丰富的临床试验”欧洲项目的一部分，进行了一项调查，以了解来自欧洲七个临床和非临床中心（癌症核心欧洲）的临床医生和研究人员对这一主题的知识、经验和看法。
向从事精准肿瘤学领域工作的 199 名临床医生和研究人员发送了参与横断面网络调查的邀请。该问卷是专门开发的，因为没有现有的问卷符合这项研究的目的。该分析考虑了受访者是否有 PPI 经验。
在总共 101 名受访者中，这项调查显示，76.2%的人在回答问卷前就已经了解 PPI，54.5%的人在过去五年中有过相关经验，86.1%的人对该主题的培训课程感兴趣。PPI 知识随着职业资历的增长而增长（成熟职业专业人员的峰值为 86.5%），而最感兴趣的课程群体是早期职业专业人员（100.0%）。最后，大多数受访者表示他们没有接受过 PPI 培训或教育（有经验的受访者中有 67.3%，没有经验的受访者中有 82.6%）。
这项调查表明，大多数癌症研究人员都知道 PPI 这个术语，即使只有略多于一半的人有过相关经验。有经验和没有经验的受访者对 PPI 的益处、负面影响、障碍和要求的看法不同，这表明经验本身会影响受访者的意见。大多数受访者表示他们更喜欢基于实践而不是理论工具的培训课程。
