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

BACKGROUND: Patient and public involvement (PPI) in health research may improve both the relevance and quality of the research. There is however a lack of research investigating the experiences, attitudes and barriers towards PPI in clinical research in Norway. The Norwegian Clinical Research Infrastructure Network therefore conducted a survey among researchers and PPI contributors aiming to investigate experiences with PPI and identify current challenges for successful involvement. METHODS: Two survey questionnaires were developed and distributed in October and November 2021. The survey targeting 1185 researchers was distributed from the research administrative system in the Regional Health Trusts. The survey targeting PPI contributors was distributed through Norwegian patient organisations, regional and national competence centers. RESULTS: The response rate was 30% among researchers and was unobtainable from PPI contributors due to the survey distribution strategy. PPI was most frequently used in the planning and conduct of the studies, and less utilized in dissemination and implementation of results. Both researchers and user representatives were generally positive to PPI, and agreed that PPI might be more useful in clinical research than in underpinning research. Researchers and PPI contributors who reported that roles and expectations were clarified in advance, were more likely to experience a common understanding of roles and responsibilities in the research project. Both groups pointed to the importance of earmarked funding for PPI activities. There was a demand for a closer collaboration between researchers and patient organisations to develop accessible tools and effective models for PPI in health research. CONCLUSIONS: Surveys among clinical researchers and PPI contributors indicate overall positive attitudes towards PPI in clinical research. However, more resources, such as budget, time, and accessible tools, are needed. Clarifying roles and expectations, and creating new PPI models under resource constraints can enhance its effectiveness. PPI is underutilized in disseminating and implementing research results, presenting an opportunity for improving healthcare outcomes.

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.

Rab7b at the intersection of intracellular trafficking and cell migration.

Rab proteins are small GTPases essential for controlling and coordinating intracellular traffic. The small GTPase Rab7b regulates the retrograde transport from late endosomes toward the Trans-Golgi Network (TGN), and is important for the proper trafficking of several receptors such as Toll-like receptors (TLRs) and sorting receptors. We recently identified the actin motor protein myosin II as a new interaction partner for Rab7b, and found that Rab7b transport is dependent on myosin II. Interestingly, we also discovered that Rab7b influences the phosphorylation state of myosin II by controlling the activation status of the small GTPase RhoA. Consequently, Rab7b is important for the remodeling of actin filaments in processes such as stress fiber formation, cell adhesion, polarization and cell migration. Our finding that Rab7b can control actomyosin reorganization reveals yet another important role for Rab proteins, in addition to their already established role as master regulators of intracellular transport. Here we discuss our findings and speculate how they can explain the importance of Rab7b in dendritic cells (DCs).