Patient and public involvement and engagement with cardiac arrest survivors.

Background: Patient and public involvement and engagement (PPIE) with cardiac arrest survivors is an essential component of research to strengthen development, design, delivery and dissemination to ensure research priorities are in the public interest and patient friendly. Cardiac arrest survivors and their relatives were engaged in PPIE to help develop the methods of a research study that aims to reduce individual and care process variation during paramedic-led resuscitation. Methods: This research methodology paper represents the views of seven PPIE representatives and the authors. PPIE representatives included five cardiac arrest survivors and two relatives. Content for the paper was generated by discussion using audio or video call. Notes were taken by the author which included direct quotations generated by the PPIE process. Results: The PPIE representatives considered research surrounding the decisions made by paramedics to be important. From their first-hand experiences, survivors and their relatives felt that a future research study should focus on patient survival. The decision-making of paramedics was identified as most important to explore. Quality of life before the cardiac arrest was considered important as this may help to inform best-interest decisions. The neurologic recovery of patients was important; however, rehabilitation may be extensive and therefore unachievable within the study timeframe. Relatives highlighted that while incorporating their views during resuscitation was important, gaining consent for research participation was not appropriate. Conclusion: PPIE added value and helped to develop a future study to reduce variation in the resuscitation decisions made by paramedics. The group identified what is important to survivors and their relatives and the factors they would like paramedics to consider when making a resuscitation decision. By identifying these factors, the PPIE process has helped to drive the research methods where both quantitative and qualitative designs would be appropriate. Issues in gaining research consent during resuscitation were highlighted.