Colombo Cinzia, Paletta Pasquale, Savarese Antonella, Pignata Sandro, Mosconi Paola, Biagioli Elena
Laboratory of Medical Research on Consumer Involvement, Department of Medical Epidemiology, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy.
Istituto Nazionale Tumori Regina Elena - IRCCS Rome, Rome, Italy.
Res Involv Engagem. 2025 Mar 31;11(1):31. doi: 10.1186/s40900-025-00701-7.
The involvement of people with experience of disease, caregivers, and patient representatives as partners in research is growing, but varies by country and research field. This survey aimed to investigate opinions, experience and training needs on Patient and Public Involvement (PPI) of clinicians and nurses from two Italian collaborative groups in gynecologic oncology research.
This cross-sectional, observational study was conducted through an online self-administered questionnaire addressed to health professionals participating in the Mario Negri Gynecologic Oncology (MaNGO), and the Multicenter Italian Trials in Ovarian cancer and gynecologic malignancies (MITO) groups, which comprise Italian reference centres for gynecologic oncology research.
Out of 108 respondents (13.7% response rate), half knew the term PPI (50.9%), slightly more (60.2%) had PPI experience, and the majority (88.9%) were interested in a training course. Most respondents thought PPI was morally/ethically the right thing to do (63.9%). The main benefits considered were improving patient recruitment and retention in a study (62.9%), and maintaining a connection to the real world (60%). The main negative effects were identifying problems not relevant to clinical research (34.2% of respondents), and involving people who are not representative of the target population (29.6% of respondents). One third thought PPI had no negative effects. The barriers most frequently selected were lack of time, resources and funding (59.2%), and difficulty in expressing scientific terms in lay language (50%). The main requirements were dedicated resources, in terms of services and staff (68.5%), training for researchers (58.3%) and training for public and patient partners (37%).
This survey provides an insight on PPI in gynecologic oncology in Italy showing that some clinicians in the field of gynecologic oncology are familiar with the term PPI and have had experience with it, but most need and ask for training. Providing a picture of the opinions, experiences and needs of health professionals regarding PPI is a starting point for planning actions to implement it in specific settings. Collaborative groups-such as MaNGO and MITO-can share organizational and professional resources to boost PPI and foster a research culture in this direction.
有疾病经历的人、护理人员和患者代表作为研究伙伴的参与度正在提高，但因国家和研究领域而异。本次调查旨在探究意大利两个妇科肿瘤研究协作组的临床医生和护士对患者及公众参与（PPI）的看法、经验和培训需求。
这项横断面观察性研究通过在线自填问卷进行，调查对象为参与马里奥·内格里妇科肿瘤研究组（MaNGO）以及意大利卵巢癌和妇科恶性肿瘤多中心试验组（MITO）的卫生专业人员，这两个研究组均为意大利妇科肿瘤研究的参考中心。
在108名受访者中（回复率为13.7%），一半人知晓PPI这一术语（50.9%），略多于一半的人有PPI经验（60.2%），且大多数人（88.9%）对培训课程感兴趣。大多数受访者认为PPI在道德/伦理上是正确的做法（63.9%）。所认为的主要益处包括改善研究中的患者招募和留存情况（62.9%），以及与现实世界保持联系（60%）。主要负面影响是识别与临床研究无关的问题（34.2%的受访者），以及纳入不具有目标人群代表性的人员（29.6%的受访者）。三分之一的人认为PPI没有负面影响。最常被提及的障碍是缺乏时间、资源和资金（59.2%），以及难以用通俗易懂的语言表达科学术语（50%）。主要需求是在服务和人员方面提供专门资源（68.5%），为研究人员提供培训（58.
