In 2015, the Bone Cancer Research Trust undertook a large piece of stakeholder research – 'Living with and beyond primary bone cancer'.
This research looked at the views of primary bone cancer patients to understand a primary bone cancer journey and what it was like to have a primary bone cancer diagnosis. The results of this project also helped us to set our research priorities to ensure that they reflect the experiences of patients.
More and more people are living with the consequences of cancer and its treatment - what we have termed Living With and Beyond Cancer. But there’s not enough research relevant to this area.
The National Cancer Research Institute and the James Lind Alliance Priority Setting Partnership are collaborating on a project to change this. The National Cancer Research Institute have opened a new survey for patients, the people who look after or have looked after them, and the professionals who work with them, to identify the most important questions that research should address.
The Bone Cancer Research Trust and Sarcoma UK are working together to ensure that the voices of primary bone cancer patients are heard and that these views are used to inform future research projects in this area.Tell us the questions that you would like answered by research by filling out the survey here and help us to improve the lives of people affected by cancer. The survey is open from 24 August to 15 October 2017. You can find out more about the project at ncri.org.uk/jla.