Patient and public involvement in health research in Norway: a survey among researchers and patient organisations.

Patient and public involvement (PPI) in health research can make the research more relevant and of better quality. However, in Norway, there has not been much research on the experiences, attitudes, and barriers related to PPI in clinical research. To address this gap, we conducted a survey among researchers and PPI contributors to understand their experiences and identify current challenges. We found that PPI was most common during planning and execution of studies. PPI was less used in the process of sharing the results from the studies, and in the process of putting the findings into practice. Those who reported that roles and expectations were clarified in advance were more likely to have a shared understanding of their roles and responsibilities in the research project. Both groups emphasized the importance of funding for PPI activities. There was also a desire for closer collaboration between researchers and patient organisations to develop accessible tools and for PPI. In summary, the survey revealed a generally positive attitude towards PPI in health research. However, more resources, such as budget, time, and accessible tools, are needed. Clarification of roles and expectations also stand out a crucial part of the PPI process, and should receive much attention in all research projects where PPI is used.