Setting priorities for mesothelioma research
Katherine wants to make sure the big questions are answered.
This Friday is Action Mesothelioma Day, and this year we’re working to put mesothelioma research in the spotlight and shape the way we learn about it for years to come.
Mesothelioma is a type of lung cancer that’s caused by breathing in asbestos dust. It can take decades for any symptoms to show, by which time the chances of survival are slim. Around 2,500 people will be told they have it this year – but there’s only been limited research into the best ways to diagnose, treat and support them.
That’s why we launched a project to identify the top priorities for mesothelioma research at the end of last year. We’re talking to people with mesothelioma, their families and health care professionals about what questions they want research to answer.
Usually, research is decided by researchers and pharmaceutical industries, so this is a unique and exciting project. My job is to ensure we give everyone an equal opportunity to have their say.
The project is funded by the National Institute for Health Research and is using a method developed by the James Lind Alliance. It’s led by a group made up of somebody living with mesothelioma, carers and health care professionals. It also includes organisations such as the British Lung Foundation, which is represented by head of research Ian Jarrold and Chris Knighton, who has raised over £1m for mesothelioma research in memory of her husband.
In the spring, we ran a survey asking people what questions they have about the diagnosis, treatment and care of mesothelioma. We had 453 responses including over 100 people with the condition, 82 health and social care professionals and almost 250 carers. We’re now analysing what they’ve told us. That involves turning all the responses into research questions and checking if we have sufficient evidence to answer them.
All the genuinely unanswered questions will be sent back to those who took part, who will vote on the ones they think are the most important. A final top 10 list of research priorities will then be decided at a workshop later this year – again, by people with mesothelioma, their carers and health care professionals.
We’ll be promoting these priorities to funders, including the National Institute for Health Research, which has already said that it welcomes proposals for research into mesothelioma. You can find out more about what we’re doing and why on the Mesothelioma Priority Setting Partnership website.
BLF: We're campaigning for a sustainable mesothelioma research fund. We need your support- see how two minutes can make a big difference.