Designing with empathy: writing content for NHS lung cancer screening
Part of my job is to write content that’s accessible and helps people make informed choices about their healthcare
As a content designer working in NHS England, part of my job is to write content that’s accessible and helps people make informed choices about their healthcare. When I talk about my work I often speak about making sure our service meets user needs and writing content for people with low health literacy skills. But some of our most important insights have been about the emotional impact of our service. These insights have helped shape our design process and the language we use.
Designing and piloting a new digital service
For the past 11 months I’ve been working as part of a multidisciplinary team in the NHS lung cancer screen programme building a new digital version of the lung health check.
The lung health check assesses a participant’s risk of developing lung cancer within the next 5 years. Those who are at a higher risk are recommended a lung scan. Currently the assessment is conducted over the phone or in-person and is delivered in certain regions in England. It will be rolled out nationally by the end of 2030.
We are piloting a digital version of the assessment to test improving access to lung cancer screening.
‘Cancer’ is a scary word
We know that lung cancer screening is an emotive subject for many people. During our user research we heard consistently that seeing the word ‘cancer’ scared them. When we tested invitation letters to lung cancer screening one research participant said:
“I would probably go into a little bit of a panic… Do they know something I don’t know?”
Some of our stakeholders preferred to avoid the use of the word ‘cancer’ in our service name because of the anxiety it can provoke. And we did hear in research that some people would avoid letters or appointments because of the fear of a lung cancer diagnosis. As a point of contrast, we also heard some users say that it would motivate them to take action.
Users need to know what they’re taking part in
The current name, the ‘lung health check’ doesn’t mention cancer, even though the assessment is part of lung cancer screening. The aim of lung cancer screening is to find lung cancer early, when it is more treatable and treatment is more successful. Our team thought that using the current name for a digital service would be confusing to users because it does not accurately describe what it is. So we tested our assumption.
What we heard from users was that they expected a lung health check to look at their general lung health. Users often mentioned physical breathing tests, like spirometry tests of lung function. Rarely did users mention cancer.
Although it might seem kinder to avoid using ‘cancer’ to try and reduce a participant’s anxiety, it could end up causing more harm and confusion if someone uses our service thinking it is one thing, only to find out later that it’s lung cancer screening. Users need to understand what they’re being invited to so they know what to expect and can be prepared for any actions they might need to take.
Analysing complex user experiences
Throughout our time designing, testing and iterating the service, we spoke to more than 80 people who would be eligible to use it. That is, people who are aged 50 to 74, are registered with a GP and currently smoke or have smoked in the past. After 4 or 5 rounds of research it became evident that whilst we were surfacing lots of new and valuable insights, these didn’t always correspond to new user needs. Our researchers began using a different approach to help us analyse complex user experiences.
This approach captures user goals, behaviours, emotions, mental models, pain points, contexts and tasks. It allowed us to consider how someone might feel and what their expectations were of our service. As well as understanding that someone’s emotions and behaviours can change depending on their context.
A user’s mental model is based on their individual background and past experiences. It can change how someone identifies. For example, as someone who ‘used to smoke’, or ‘quit smoking but still has the occasional cigarette’.
Part of our service asks users detailed questions about their smoking history. For example, when they started smoking and how many cigarettes they smoked a day. We found that some users experienced discomfort or shame answering these questions. Some people might have struggled to quit, or stopped smoking multiple times. It’s important that our service doesn’t make them feel judged.
Encouraging users to take action
We spoke to subject matter experts, such as behavioural scientists, whose research findings aligned with our own. Highlighting the benefits of lung cancer screening can help encourage people to take part. It also allows us to be transparent about our service in a way that frames the benefits of taking action.
When asking users for sensitive or personal information, we explain why we’re asking for it. For example, some of our designs explain that we ask certain questions because it could impact someone’s chances of developing lung cancer. Being clear and direct helps users understand why we ask for certain information. We’re also hoping that it’ll encourage users to continue with the questionnaire, rather than dropping out of our service because the questions seem irrelevant.
Reassuring users
Some users have a mindset of wanting to have a lung scan and to provide as much information as possible. During research we heard from users who were anxious to make sure they gave us accurate answers.
We took time to make our language plain and non-judgemental, and made sure our questions about someone’s smoking history were short and direct. This made some users anxious because they couldn’t remember certain details. They worried that not providing the right information could lead to them not having a lung scan.
We changed our language to be more reassuring, to let users know that they could give us rough estimates. Even small tweaks, such as adding ‘roughly how many…’ and ‘give an estimate if you are not sure’ helped users answer the questions with more confidence.
What’s next
Our digital pilot is rolling out in North West London towards the end of April. We’re testing the clinical safety of our service during this phase, when participants will be invited to test the digital service before repeating the questionnaire by phone. Once the pilot is complete, we will analyse the results and compare how people answered on their own online, with how they answered on the phone. The pilot will help inform whether to develop a national digital assessment.
We know there are likely to be differences between how someone responds in a digital service, to how they respond when someone is on the phone helping to explain questions and interpret responses. We might also find that some participants are more honest about their smoking history in the digital service because they don’t have to tell another person their answers.
We’ll continue to learn more about how users experience our service through the pilot, hearing from participants and testing our designs with users in interviews.
Read more about our work: NHS lung health check design histories