What are the best approaches for designing and communicating information about trial retention for trial participants?

  • “Information given out is poor quality. Patient information leaflets (PIL) are long, often technical (because they need to be from and ethical approval point of view) and visit schedule are rarely made explicit. Use of a brief leaflet to give basic outline about a study has worked well to ‘sell’ the study initially rather that put participants off using a multiple page PIL. Text message and email reminders are helpful but easy to ignore. Phone calls and study letters more formal and immediate communications and are harder to ignore a person on the phone.” (Frontline staff or other staff involved or invested in trial retention (e.g. Research Nurse, Trial Manager, regulatory or oversight role such as Sponsor or Research Director))
  • What should be considered for an effective Patient Information Sheet (P.I.S.)? The P.I.S. for the stroke trial my dad was on was appalling (and obviously scrappily photocopied). He didn’t even understand it was an RCT. It even took me a while to find that information on the sheet and I’m a researcher!? What elements make for good communication of key points? From personal experience, text message reminders work well for clinical appointments. (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)