Researchers from Lancaster and Bangor universities have been awarded £835,000 from the National Institute for Health and Care Research (NIHR) to examine how health services can better support people's decision making when considering radiotherapy for gynaecological cancer.
Dr Lisa Ashmore, joint lead researcher from Lancaster University, said: "We currently have a situation where people are looking back on their decision to consent to treatment and are thinking that they were unprepared for the impacts on life that lay ahead. Changing this will mean people know what they are saying yes to and can better prepare for the future."
The Lancaster University team, which includes Dr Hilary Stewart and Dr Laura Wareing, will aim to understand patients' personal experiences and co-create policies, procedures and resources to support the consent process.
"By explaining the physical and emotional burdens of radiotherapy in figures and in patients' own words, information will be more accessible. This means they are less likely to be distressed about treatment decisions and will feel more prepared for the future."
They will also work with patients and their charity partner Radiotherapy UK to deliver events across the UK to raise awareness of radiotherapy and gynaecological cancers.
Lynsey Rice, Projects Manager from Radiotherapy UK, said: "Members of our patient engagement group tell us time and again that they were just not prepared for the reality of life during and after cancer treatment.
"We want to know how we can better prepare people for treatment and everything that comes with it, using language and conversations that welcome questions and insights. Truly informed consent about the risks and benefits of treatment cannot be rushed, and this project is a bold step forward in learning more."
The Bangor team will bring Health Economics expertise to look at how people who have had radiotherapy treatment for gynaecological cancer consider the risks and benefits.
Dr Emily Holmes from the University of Bangor said: "Making treatment decisions can be difficult. It is important that people understand the benefits and risks. Knowing what it has been like for other people may help. We will generate new evidence on acceptable risks of long-term side-effects in exchange for treatment benefits. This will provide valuable information on the relative importance of outcomes for consideration during the consent process."
The project team also includes patients and clinicians from Lancashire Teaching Hospitals, South Tees Hospitals, and The Christie Hospital.
The project, which will run until 2027, follows on from the Gynae Narratives project led by Dr Ashmore, funded by North West Cancer Research.
