Current trends in patient and public involvement in cancer research: A systematic review

Background Patient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. Objective To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations. Methods A search was conducted on PubMed, CINAHL and PsycINFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included. Results Twenty-seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking. Conclusion PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.