Frequently asked questions about patient involvement
To gain further insight into what being involved in PPI activities can look like, please see below a set of frequently asked questions, answered by volunteer Pauline Murray, who has been involved in PPI work. Her answers show why they feel it is important for people to take part in encephalitis research.
If you have any further questions about taking part in research studies, please contact our PPI Manager.
FAQs
A: As a nurse I understand the importance of ensuring the treatments are evidence based and that involves research.
A: Encephalitis International contacted me and asked if I’d be involved as I had received the treatment they were doing the trial on.
A: It’s still on-going as the Covid pandemic had an impact on recruitment centres due to staffing and redeployment of staff during this time. I am the patient representative that is required on drug trials. We meet on zoom
A: Understanding all the hoops and layers of what is required from reviewing patient information sheets for recruitment and all the legislation to ensure safe practice is adhered to.
A: It would be mostly 1-2hr every few months so not time consuming.
A: I have found it interesting and am grateful that this trial is going ahead. I feel for a rare autoimmune condition any research is welcome to help advance treatment options.