Mesothelioma Priority Setting Partnership
From 2013-14 the Mesothelioma Priority Setting Partnership (PSP) brought together people with mesothelioma, their families, carers and the healthcare professionals who treat them to help set priorities for mesothelioma research.It gave them a chance to highlight mesothelioma research that would make a difference to them, so that the most important questions for research could be identified.
The Mesothelioma Priority Setting Partnership (PSP) was set up to help put mesothelioma research in the spotlight. Its aim was to identify patients’, families’ and healthcare professionals’ unanswered questions about mesothelioma treatment. It did that by asking them to complete a survey, then prioritising the questions that these groups of people agreed were the most important. The result was a top 10 list of mesothelioma questions for researchers to answer.
What is mesothelioma?
Mesothelioma is a type of cancer. It usually occurs in the pleura, which is a thin lining in the chest. Less commonly, mesothelioma can affect a similar lining around the abdomen or heart. The main cause of mesothelioma is breathing in asbestos dust. The symptoms of mesothelioma only show up decades after being exposed to asbestos. The condition is slow to appear and then quick to progress. Mesothelioma is complicated. It is not easy to diagnose or treat. (Mesothelioma, British Lung Foundation).
“Mesothelioma research has been identified as an important area. I’m delighted that the NIHR can support the James Lind Alliance in forming a Priority Setting Partnership to bring together patients, carers and clinicians in this area. The Priority Setting Partnership process is a tried and tested way for them all to contribute equally to decisions about what the important questions are for Mesothelioma research to address.”
Professor Dame Sally C. Davies
FRS FMedSci, Chief Medical Officer and Chief Scientific Adviser at the Department of Health
The Mesothelioma Priority Setting Partnership (PSP) brought together organisations and individuals who represent the following groups:
- people who have mesothelioma
- carers, relatives and friends of people who have or had mesothelioma
- health and social care professionals with clinical experience of mesothelioma.
The following groups played a vital role in the PSP by helping to promote the survey, and by getting involved in the priority setting:
- Asbestos in Schools
- Asbestos Support West Midlands
- Asbestos Victims Support Groups Forum UK
- British Lung Foundation
- British Thoracic Oncology Group
- Cardiff University Institute of Cancer and Genetics, Velindre Cancer Centre
- Cheshire Asbestos Victims Support Group
- Clydeside Action on Asbestos
- Cumbria Asbestos-Related Disease Support
- Derbyshire Asbestos Support Team
- Faculty of Health and Medical Sciences, University of Surrey
- GRIST (Growing Recruitment in Interventional and Surgical Trials)
- Mesothelioma Support Yorkshire
- Mesothelioma UK
- Mick Knighton Mesothelioma Research Fund
- National Lung Cancer Forum for Nurses
- Serena Chee, Respiratory Research Registrar, University Hospital Southampton
- South Yorkshire Asbestos Victims Support Group
- The June Hancock Mesothelioma Research Fund
“It is a privilege for Mesothelioma UK to be working with patients, the JLA team and the NIHR on the Mesothelioma PSP and we look forward to seeing this rigorous approach reach fruition. Research into the treatment and care of mesothelioma needs and deserves significant investment and hopefully that will follow once genuine research priorities have been identified. The survey is a great way to understand the issues that worry mesothelioma patients. As a group, we feel that our voice is unheard.”
Liz Darlison, Mesothelioma UK