Why behavioural science is key to improving screening uptake
In this article, Dr Samantha Quaife, a Reader in Behavioural Science at Queen Mary University of London, discusses why incorporating psychological and behavioural science into the development of any new screening programme from the very beginning is vital to success.
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Person in a CT scanner with doctors reviewing film
We often hear the old adage, ‘prevention is better than cure’. While this is the case for all diseases, one disease where it has been shown to be particularly true is cancer. By not smoking or stopping smoking, reducing alcohol intake and exercising regularly, people can significantly reduce their chances of developing different types of cancer, and public health policies, like smoke-free laws, can help make these changes easier for everyone.
Alongside this, decades of research have given us interventions that work at scale to stop some cancers from developing at all or find them early when treatment is more likely to succeed.
For example, researchers at Queen Mary provided the evidence to show that certain strains of the human papillomavirus (HPV) cause cervical cancer. Building on 20 years of research, the team then showed that vaccinating against HPV prevents infection, precancerous changes, and cervical cancer. They have also shown that the introduction of the HPV vaccine has reduced deaths from cervical cancer in England, with estimates showing that children vaccinated aged 12–13 have close to zero risk of dying from cervical cancer before the age of 30.
Screening programmes work in a different but complementary way. Some, like cervical and bowel screening, can find and treat precancerous changes. Others, like the National Lung Cancer Screening Programme in England, help detect cancers earlier, before they progress to a late stage when they’re harder to treat. The evidence to support implementation of the National Lung Cancer Screening Programme drew substantially on the work of academics at Queen Mary, who worked closely with colleagues in the NHS and other universities, to develop and implement this programme.
Key to any screening programme achieving its aim of detecting more cancers early, and ultimately reducing deaths, is people taking up their invitation to be screened.
For many people, taking up a screening invitation feels easy and straightforward. But for many others, it isn’t, and those facing the most barriers are often the people who stand to benefit most. Not taking part is rarely a single, deliberate decision; it’s often the result of how screening is offered and how well it fits people’s lives.
So how do we change this? How do we make screening work for more people, especially those who are most likely to benefit? For me, behavioural science is a crucial part of the answer.
Tailor your approach
The reasons people don’t take up a screening invitation are varied. For some, it’s one more thing to fit into busy lives, and the logistics simply don’t work. Others may be unsure what screening involves and whether it’s meant for them. For some, the prospect of finding out they might have cancer is frightening enough to be put it off, and others, like people who smoke, may worry about being judged. Mistrust of healthcare, often shaped by past experiences, can also put people off taking up a screening invitation. Crucially, these barriers rarely occur alone; they interact and stack up, especially for people facing wider disadvantage.
Improvements to how people are invited, such as pre-booked appointments, clearer letters, and well-timed reminders, have helped many more people take part in screening programmes. But even the best-designed invitation won’t reach everyone. What can help is a more personal offer of support, someone who can find out what’s really getting in the way and help with that. For one person, that might be practical help with booking or getting to their appointment; for another, a chance to talk through their worries; for someone else, simply a clear, friendly explanation of what screening involves.
This is where behavioural science comes in. It looks not only at why people don’t take part, but at how the screening system itself can make taking part easier and helps design support that adapts to each person’s needs while still being practical to deliver at scale.
By taking the time to tailor the support to people who haven’t responded, behavioural scientists like me can have a positive impact on screening uptake. This was the approach we took when looking to improve informed participation in lung cancer screening among people who had not responded to multiple rounds of screening invitations.
Using our experience and expertise in psychological and behavioural science and building on our research into why people do and don’t take part in lung screening, we developed a ‘navigation’ programme to support these people to take part. The programme uses a team of ‘navigators’ trained by behavioural scientists in communication, navigation skills and motivational interviewing. Using these skills, the navigators support people who previously haven’t taken up their lung screening invitation in a personalised way, helping them address any emotional, practical, language or accessibility barriers to taking part.
While this may sound labour-intensive, early findings are extremely encouraging. Navigation is reaching people that improved invitations have not and appears to be having a greater impact than any of the other approaches we’ve tried. We’re also proud that, while the programme takes a personalised approach, it is a brief intervention situated within the wider healthcare system, meaning it’s feasible to roll out more widely, and across screening programmes.
Build trust
If we want to increase representation in clinical trials and improve uptake of screening programmes among communities that have historically been excluded from them, we need to build trust within and across these communities. That means working with them as partners, so their knowledge and priorities shape how research and screening are designed and delivered, and people can make informed choices about whether to take part.
This is the approach we’re taking in the TRANSFORM prostate cancer screening trial. My colleague Dr Philip McNamee and I lead the behavioural science component of TRANSFORM, and are working in partnership with Black communities, charities, health advocates, local groups and community organisations to understand how to make it as easy and relevant as possible for more Black men to take part in the trial, particularly those who have historically faced barriers to accessing prostate cancer testing and care. Through this work, we’re developing inclusive, informed approaches, underpinned by behavioural science, to inviting all eligible Black men to take part in TRANSFORM, with a view to improving detection and treatment of prostate cancer in this high-risk group.
Determine acceptability
With any new intervention, whether it’s a cancer screening programme or a new way to take a drug, we need to know it’s acceptable to the people it’s designed for. If a test is uncomfortable, embarrassing or confusing, many people won’t use it, however accurate it is. In fact, the UK National Screening Committee requires screening tests to be acceptable to the people they’re offered to. But, as colleagues in our team have highlighted in a recent paper, assessing acceptability well is far from simple.
This is why behavioural scientists need to be involved from the start. By understanding people’s experiences and concerns early, before decisions about rollout are made, we can be much more confident that a new approach will work in practice and for everyone it’s intended to reach.
This was the approach that my colleagues Professor Jo Waller, Dr Laura Marlow and their team of behavioural scientists took in the HPValidate study. Commissioned by the Department of Health and Social Care, the study examined both the accuracy and the acceptability of HPV self-sampling kits for cervical screening. The team assessed people’s experiences of using the kits, including how comfortable, anxious, embarrassed, or confident they felt, and whether they would like a choice between self-sampling and a clinician-taken test in the future.
Most participants reported an excellent or good overall experience of using a self-sampling test. This work provided key evidence that influenced the Government’s decision to offer home testing kits to eligible women and people with a cervix as part of the NHS England 10 Year Plan.
An essential component, not a nice to have
Building behavioural science into every stage of a new cancer screening programme, from the earliest decisions about whether and how to offer it, through to how it is implemented, is key to its success. And looking beyond cancer, including the expertise of behavioural scientists in any health intervention or research project that relies on people taking part or changing their behaviour is vital.
By treating behavioural scientists as essential to a project, rather than a nice to have or an addition at the end, we can be more confident that trials and screening programmes will be more robust, more likely to succeed and more likely to benefit everyone, not just some groups.
I’m proud to say that at Queen Mary, we have one of the largest groups of cancer behavioural scientists in Europe and this approach is well and truly embedded in our research environment. The benefit of this culture is clear to see when we look at the impact our work is having on making cancer screening reach and work for more people across the UK.