A case study of patient and public involvement in sepsis genomics research.

Abstract

Background: Patient and public involvement (PPI) in research has been shown to be integral to good research practices, ensuring research is relevant to the population it serves and appropriately conducted. However, there are few examples in the literature of patient and public involvement in discovery translational research using patient samples from non-interventional studies. The aim of this case study is to report our group's experience incorporating PPI into such work involving sepsis genomics research over a year, challenges we faced, and how we overcame them.

Methods: We first reviewed the literature for successful PPI practices, asked for advice from other experienced groups at our institution, engaged interested groups and individuals, decided on the key aims of the PPI group, and developed materials to summarise our research and the knowledge gaps within sepsis. We recruited fourteen partners with lived experience of sepsis through a variety of sources to join our PPI panel and built a relationship with them by having regular meetings, and nominating a link researcher in the group who would be their port of call for any questions or updates. The partners met with the researchers online using a commercial virtual communication platform, and were sent surveys at different points during the process to assess partner satisfaction with the process. We followed the plan-do-study-act method for quality improvement.

Results: The PPI partners helped shape the direction of research investigation for the group. They joined research grant applications, supported preparation of plain language summaries and research participant information leaflets to be given to patients and families. They helped researchers improve the conduct of the clinical aspect of studies that involved collecting patient samples in the long term. The Patient and Public partners reported high levels of satisfaction joining the programme and received some educational information about the research process and sepsis research, as well as remuneration for their time.

Conclusions: Patient and public involvement in discovery translational research is feasible and can be very useful and rewarding for both the researchers and patient and public partners involved. A coordinated strategy including engagement of interested groups and individuals, clear directions for the PPI group, and a named link researcher was essential for success.