How does involvement of patients/the public in planning and running trials improve retention?

  • “Include outcomes which are of importance to patients by discussing the issues with them when planning a trial. Their concerns may be different from those of the trial team.” (Investigator (e.g. Chief Investigator, Principal Investigator, Co-investigator))
  • “As above, patients should be involved in this planning and decisions. But if the costs of doing this were not anticipated correctly and/or included in the trial budget, then it won’t happen. What clinicians think is important to measure probably differs from what patients regard as important – there needs to be a mechanism for discussion and agreement on combining these different views.” (Patient or public member involved in a trial (as a participant or parent/carer of a participant, or as a contributor to design/delivery of trial))