By driving understanding of health behaviours and the psychological barriers to seeking help, the work of an innovative collaboration has supported the prevention and early intervention agenda

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What do former health secretary Alan Milburn, a team of computer game developers and the creative masterminds behind Wallace and Gromit have in common? The possibly surprising answer is work on a project designed to support NHS sustainability.

Live:Lab was launched back in 2017 and convened by pharmaceutical company AbbVie’s UK team. The project brought together a group of professionals from multiple backgrounds and perspectives. Together, they were charged with finding ways to make the NHS more sustainable as demand grows and resources continue to be constrained.

Their particular area of interest: how can we encourage people to visit the doctor earlier in the event of worrying symptoms? It was a focus determined following initial work that identified a phenomenon dubbed Fear of Finding Out. Research from think tank 2020health suggested FOFO makes up nearly a third of all conscious reasons why individuals may be delaying or avoiding visiting their doctor or seeking medical advice when they may be concerned, or not taking the relevant steps to improve their health.

And so Live:Lab involved creating a gamified quiz to understand more about the issue. The questions were developed by Carmen Lefevre, a behavioural scientist at UCL’s Centre for Behaviour Change, and answered by 4,337 participants in the UK.

The data from the quiz supported the idea that people who experience FOFO tend to prioritise other factors (such as job, family and relationships) over their health and encourage others to seek medical attention more than themselves.

The resulting research report suggests this all means combatting FOFO should be a key facet of the NHS’s work on prevention and early intervention. This may mean changing the way in which conversations are conducted between healthcare professionals and patients – moving to a motivational interview-type approach, for instance – and focusing on awareness campaigns which make even clearer the need for early action in the event of concerning symptoms.

To help support the development of such actions – and indeed other approaches to combatting FOFO – AbbVie UK has made all data collected in the quiz open. This means it can be freely accessed and manipulated by anyone with an interest in this important area. And given the focus on early intervention and prevention in the NHS long-term plan for England, it is likely this will include many working within the health and care spheres.

When Mark McGovern first started experiencing worrying health symptoms, he put off visiting the doctor. As the sole breadwinner for his family, he reasoned that he couldn’t afford the time off work that might result.

A few years later, he found himself in hospital following a stroke. The likely cause? Type 2 diabetes, with which he’d probably been living for some time and which had gone undiagnosed because of his reluctance to visit a doctor.

Mr McGovern’s story is a summary of a phenomenon that has been dubbed “Fear of Finding Out”. It’s the idea that people are avoiding visiting health services early in the event of worrying health symptoms because they are concerned about what might happen next.

Research has shown FOFO makes up nearly a third of all conscious reasons why individuals may be delaying or avoiding visiting their doctor or seeking advice in the event of worrying symptoms. The actual fear can range from embarrassment about possible physical examinations, to concerns about being asked to make lifestyle choices, to – as in the case of Mr McGovern – worries about the impact on family or work.

In 2017, AbbVie UK launched a collaborative project to try to combat FOFO. Live:Lab brought together professionals from across disciplines to try to find ways to make the NHS more sustainable. Through a gamified quiz, the project discovered more about FOFO. And by making the results available as open data, the hope is that it will be the start of work to combat it consistently.


Job number: UK-ABBV-200005

Date of publication: 12/February/2020