The priority setting workshop
The Mesothelioma PSP final workshop took place on 10 November 2014. By the end of the day, 30 participants had successfully put the 30 questions in order of priority and agreed the Top 10. Just outside of the Top 10, another three questions were noted as being important to highlight. Half of the group were patients and carers and their representatives, the other half were health professionals.
The discussions were lively and passionate, incorporating many viewpoints and experiences. The collaboration on the day and throughout the year-long process brings home the importance of the agreed research priorities to the mesothelioma community. We hope that this work will help researchers to find answers to the questions which will make the most difference to those affected by the disease.
"I thought Monday's workshop was brilliant! The opportunity to discuss the whole subject of mesothelioma in one meeting, with such a pre-eminent cross section of UK experts and on an equal footing was exhilarating. I must admit I had some misgivings about the outcome at the beginning but in the end thought it was exactly right."
Graham Sherlock-Brown, patient on the Mesothelioma PSP Steering Group
"Just reflecting on working in one guise or another with patients with a mesothelioma diagnosis since the early 90's it would have been almost inconceivable back then to dare imagine a room full of patients/carers/clinicians sharing the stage and having an equal say about such important issues. It was a massive privilege to be included in the process and be able to offer some comment and opinion. The facilitation of the more vocal clinicians and carers was exceptional and ensured that everyone could safely have their voice heard. It truly was an amazing experience and I am looking forward to the future of relevant trials in this previously desolate landscape."
Naomi Horne, Macmillan Lead Lung Cancer Nurse/Mesothelioma UK Nurse
"An extraordinarily interesting project. I've never been to an event with such a large contribution from patients and carers. Their presence made the day special and unique in my experience."
Jeremy Steele, Consultant Medical Oncologist, St Bartholomew’s Hospital, London