Imagine this – you’ve just heard the words everyone dreads: ‘’You have lung cancer’’. The world around you swims. You feel you’re drowning. Your heart stops.
But then you hear: ‘’Your cancer is at an early stage. You can have curative treatment’’. A potential cure? Yet you decide not to take it. Why not?
As part of our International Women’s Day series, we caught up with Dr Emma O’Dowd and her colleague Dr Helen Morgan whose research the DECLINE project focuses on listening to patients who choose not to have treatment that could save their lives, trying to understand why they make that choice and unpicking the structural inequities preventing these patients from engaging with healthcare services.
In 2012, Emma became our first Clinical Research Fellow, and Helen became our third in 2019. This means the charity is funding their research and enabling them both to combine work as hospital doctors with their parallel careers as researchers.
Emma explains how the project began.
‘’The idea came out of looking at patients in our own NHS Trust where we work in Nottingham’’, she says. ‘’Some were suitable for a treatment to give them a cure, but said no. The National Lung Cancer Audit did a little spotlight on this, and we thought this was worth looking into in greater depth.
‘’We realised we needed to go out and talk to people and find out what their reasons for refusing treatment really were.’’
‘’We’re desperate to offer a cure to people if they can have one, so we need to break down whatever barriers they face. Is it just fear? Perhaps it’s the stigma and the misconceptions that can be associated with lung cancer? Or are there more practical issues, such as transport?
‘’Many people live in areas a long way from the bigger city hospitals where surgery and other curative treatments are available – so is it a question of access? In an area like the East Midlands, patients sometimes have to travel 60 miles or so to come to a centre where they can get treatment. So, for some people the cost or practical arrangements might be a major factor.
‘’The better we understand these things, the more we can look at ways to mitigate the obstacles and barriers people may face, by making transport more readily available for instance.
Maybe as a medical profession, we need to look at the way we’re talking to patients and explaining things, as well as trying to help people understand what they’re facing and what options we can offer them.Dr Emma O’Dowd
Helen adds, ‘’We know they are some patients who are just unable or just don’t want to engage with healthcare services. Many are scared – which is completely understandable – and they don’t want all the worry and stress of having to come back to hospital, so they don’t want any treatment.
‘’That’s why the Decline study is valuable, we think. The key is where we talk to patients, where we go and interview them and find out the individual issues they face.
‘’We recognised that we need to speak to individuals, speak to people from different areas with different backgrounds and find out what their particular barriers to treatment were.
Not all patients are the same, but if we can talk to enough of them, we can build up an idea of the common problems that people have. And hopefully, we can implement changes to the system, to how things work, to make them easier for patients.Dr Helen Morgan
“We may not be able to get rid of all the obstacles people face, but hopefully there will be simple changes we can implement to really help patients on an individual basis.’’
Using a mix of communications technology and old-fashioned face-to-face contact, Emma and Helen’s work is helping to clarify the complex mesh of issues behind the puzzle of why some people decline curative treatment.
Our charity has always been dedicated to funding pathfinding research to improve early detection and the overall patient experience for all people living with lung cancer.
We are proud to fund their work, which is supplying data on which the NHS might build better access for all, so more people can have the lung cancer treatment, care, and respect they fully deserve. Emma sees our role in their work as crucial. “It’s real support,’’ she says. ‘’On top of that, if you look at the areas of research the charity funds, with the best will in the world, the government simply wouldn’t back pathfinding projects like ours.’’