Successful Patient and Public Involvement requires time, resources, support, and informal contact

We evaluated the process of Patient and Public Involvement (PPI) in developing the EUonQoL-Kit, a new set of quality of life questionnaires for cancer patients and survivors. Five co-researchers, all with lived experience of cancer, participated in four major events in the development process. Initially, discussions focused on technical aspects, but later shifted to incorporating the co-researchers' experiences. Training workshops improved researchers' engagement with the co-researchers, leading to more active participation. Our findings highlight the importance of time, resources, support, and informal contact between researchers and co-researchers for successful PPI. To support learning and inspiration, there is a clear need to share such practical examples of PPI in research.

Read more: ‘Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires.’