Patient and public involvement in research: a survey on experience, opinions and training needs of gynecologic oncologists in two collaborative groups in Italy.

BACKGROUND

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.

METHODS

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.

RESULTS

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%).

CONCLUSIONS

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.