Patient & Public Involvement (PPI) Evening
8th November 2018
With the feasibility trial well underway, our energies turn to the much larger, planned main trial which will be shaped by the views of patients, carers, healthcare professionals, researchers and other stakeholders. As such, we held our first PROVENT PPI event in November 2018, attended by the PROVENT Chief Investigator (CI) Mr. Greg Shaw, current PROVENT feasibility study participants & local research staff members, men on active surveillance (AS) programs from around the UK, partners/carers & personnel from the Orchid Charity & tissue bank
The evening began with welcomes and introductions followed by an update on the feasibility trial, and proposed plans for the main study, from the CI. Rebecca Porta, Chief Executive of Orchid discussed the work the charity carries out, on behalf of anyone affected by male cancers, focusing in particular on prostate cancer.
After some light refreshments and the opportunity for informal chat, the group discussed both the current feasibility trial and the main study. Conversations included what has and has not worked within the feasibility trial, experiences of, and feelings around being on AS, particularly anxiety, and the value & relevance of PROVENT.
On practical note the group reviewed & commented on the trial plain English summary, patient information sheet, consent form, placebo tablet size, preferred study associated H-pylori test & the acceptable number of research questionnaires, blood and urine samples.
Finally the evening ended with a proportion of the attendees agreeing to be part of a regular consultation group & discussions about the format, locations and timings for future events, before leaving with a variety of leaflets and resources about male cancers, provided by Rebecca, and even a few leftover cakes and sandwiches.
If you are interested in participating in future PROVENT PPI events, please do not hesitate to contact us at firstname.lastname@example.org