The Mesothelioma Priority Setting Partnership (PSP) is bringing together people with mesothelioma, their families, carers and the healthcare professionals who treat them to help set priorities for mesothelioma research.
Launched in December 2013 by the James Lind Alliance and funded by the National Institute for Health Research (NIHR), the PSP is being guided by a steering group of mesothelioma patient charities and clinical groups.
The project has been set up to help put mesothelioma research in the spotlight. It aims to identify patients’, families’ and healthcare professionals’ unanswered questions about mesothelioma treatment by asking them to complete a survey, either via this website or on paper. It will then prioritise the questions that these groups of people agree are the most important. The end result will be a top 10 list of mesothelioma questions for researchers to answer. The PSP will work with the National Institute for Health Research to turn the top 10 priorities into fundable research questions.
The project wants to hear what patients, carers, families and healthcare professionals believe are the most important unanswered questions around the diagnosis, treatment and care of mesothelioma. It is vital to gather the views of as many people as possible so that the PSP know the topics that are a priority for research to investigate.
Launched in December 2013 by the James Lind Alliance and funded by the National Institute for Health Research (NIHR), the PSP is being guided by a steering group of mesothelioma patient charities and clinical groups.
The project has been set up to help put mesothelioma research in the spotlight. It aims to identify patients’, families’ and healthcare professionals’ unanswered questions about mesothelioma treatment by asking them to complete a survey, either via this website or on paper. It will then prioritise the questions that these groups of people agree are the most important. The end result will be a top 10 list of mesothelioma questions for researchers to answer. The PSP will work with the National Institute for Health Research to turn the top 10 priorities into fundable research questions.
The project wants to hear what patients, carers, families and healthcare professionals believe are the most important unanswered questions around the diagnosis, treatment and care of mesothelioma. It is vital to gather the views of as many people as possible so that the PSP know the topics that are a priority for research to investigate.
You can help make the project a success by:
- Fill in the online survey or complete a paper copy and send it back once it is available in spring 2014.
- Pass on the information to encourage your family members, support networks, carers or colleagues to fill in the survey.
- Circulate copies of the mesothelioma postcard to relevant groups. Get in touch with the PSP if you’d like some printed copies.
- Keep in touch with the PSP so that the project can invite you to help in the next stage of prioritising the questions that we receive. Whether you’ve taken part in the first survey or not, you can still vote on priorities.
The survey of uncertainties around the diagnosis, treatment and care of mesothelioma will be available from the PSP from spring 2014.
Please contact the PSP if you can help with communicating the survey to as many patients, carers, families and healthcare professionals as possible.
If you want to know when the survey is available, please join the PSP mailing list by emailing jla@southampton.ac.uk.
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