NeuroSAFE PROOF Public & Patient Involvement Session

The Covid-19 pandemic physical distancing restrictions mean that the research team are not able to hold events with patients in person, but undeterred and ever-innovative the online event went ahead and was received very well by the participants.

NeuroSAFE PROOF is a surgical randomised controlled trial (RCT) investigating whether the NeuroSAFE technique will improve patient outcomes, and in particular erectile function recovery, in men having surgery to cure their prostate cancer.  The NeuroSAFE PROOF study is now open at 4 prostate cancer hospitals in the UK (UCLH, Bristol, Glasgow and Sheffield) and has recruited just over 200 men at the time of writing.  The final recruitment target is 470 to allow the individual results of each man to be combined in order to provide a clear statement on whether the technique can help, and for whom the technique may be beneficial, to aid a man’s erectile function recovery without compromising cancer cure.

The NeuroSAFE team invited men from all four participating sites and sent approximately 180 emails of invitation (not including reminders) in advance.  On the evening, the event was well attended with over 35 patients (see photo below) dialling in as well as representatives from the National Institute of Health Research (NIHR), the study’s funders (JP Moulton Charitable Trust), Surgical & Interventional Trials Unit, and National Cancer Imaging Trials Accelerator.  It was especially pleasing to convene the PPI event in July as it coincided with the re-opening of the study to recruitment after a 4-month suspension, again on account of the Covid-19 pandemic.

At previous successful PPI events, the NeuroSAFE PROOF team have invited patients to UCLH hospital in central London where talks were received in person and refreshments were provided.  On this occasion, men could enjoy the talks and participate in the interactive elements from the comfort of their own home.  Indeed, many of the trial participants will be familiar with remote contact with the trial team since the study’s clinical follow-up appointments have also been transformed into telephone appointments in order to reduce travel, hospital footfall and risk of contracting Covid-19 in line with government regulations.

During the 75 minutes event participants were treated to talks about the results of the Feasibility Study (now completed) from the Chief Investigator and Consultant Urologist at UCLH, Mr Greg Shaw.  They also heard about future exciting directions of research, including digital imaging platforms such as ex-vivo Confocal Laser Microscopy from Dr Aiman Haider (Consultant Uro-pathologist and former NeuroSAFE clinical research fellow) and Dr Sarah Toomey (Specialist Registrar in Pathology).  Lastly, they were given considerable fascinating insights into both the challenges and the joys of conducting international, prospective, ethically sound, patient-centred research during a pandemic by the trial research team including Mr Jack Grierson (NeuroSAFE PROOF trial manager) and Sister Rosie Clow (NeuroSAFE PROOF Clinical Research Nurse).  The final session of the evening was a deliberately interactive feedback session, led by Mr Eoin Dinneen (NeuroSAFE PROOF Associate Principal Investigator), where the trial team asked men and their partners a selection of important questions about ‘meaningful definition of erectile function recovery’ following surgery.

Although it was a great shame not to see our participants (many of whom who have now finished their time on the study) and their family members again in person at the PPI event, there were certainly some benefits to the online session.  Firstly, the televisual platform avoided the necessity for men to travel long distances to attend therefore also allowed men from Bristol and Glasgow sites to join.  Secondly, the online interactive voting platform allowed the trial team to invite important feedback from participants in an anonymous fashion about potentially personal or intimate subjects such as erectile function.  Though the team were initially apprehensive about the new format of the event, in fact, even should travel restrictions be limited in the future, it is likely that we will stay with the teleconference as the preferable structure for similar PPI work.

The NeuroSAFE PROOF research team is motivated exclusively by trying to find ways to improve recovery for men undergoing prostate cancer surgery and providing exceptional quality of care for our trial participants.  As such, we were grateful and delighted to be greeted with so many friendly faces and participants (past and present) online who were interested and able to join our event.  Their participation is sustaining, their feedback is formative and we sincerely look forward to keeping them involved as the NeuroSAFE PROOF study evolves and matures.