It is surprising, admits Martin Jansen, researcher in health communication. When one thinks of online forums and social media, an image of misinformation and conflicting opinions quickly springs to mind. But in their research into how news media and social media in the Netherlands influence public perception of cancer screening, he and his colleagues saw a different picture. 'Particularly within online communities, people actually empower one another when it comes to cancer screening,’ he explains. 'They support each other, offer practical tips, reassure one another. ‘And in this way, they encourage one another to make independent choices, for example, whether or not to take part in a screening programme.’
Online support rather than discouragement
Jansen does emphasise the difference between online forums and social media, such as X (formerly Twitter). ‘On forums, communities tend to be closer-knit. People sometimes see each other as friends and they are quicker to share personal doubts and experiences. There is more room for nuance there. On X, due to the limited length of 280 characters, posts often become personal statements, which remain more superficial in terms of content and tone.’
Jansen, who is now a postdoc at the University of Amsterdam, carried out the research project on the influence of news media and social media on screening programmes during his time as a postdoc at Radboud University in Nijmegen, in the context of which he collaborated with, among others, Enny Das, Professor of Communication and Persuasion. The research consisted of three sub-studies: a study of a dataset of tweets (from 2011 to 2023), a study of data from the online Viva forum (from 2010 to August 2024), and a study of news media (from 2010 to 2022). The focus was primarily on content relating to screening programmes for breast cancer, bowel cancer, and cervical cancer. The analysis shows that the decline in participation in screening programmes cannot be explained solely by negative online reporting. In 2022, 70.7% of those invited in the Netherlands took part in the breast cancer screening programme, 68% in the colorectal cancer screening programme, and 46% in the cervical cancer screening programme.
According to Jansen, fear of the results, physical discomfort during screening programmes – such as during a mammogram or smear test – and practical barriers to screening play a greater role than misinformation. ‘News articles were shared most frequently on X. We also found that, in terms of numbers, the amount of misinformation was actually not as bad as expected. In a manually examined selection of 1,200 tweets, we found only twenty-three posts containing misinformation.’
These often involved minor discrepancies in statistics, Jansen notes. ‘For example, people might quote a percentage that differs by five percentage points from the actual percentage. The question then is to what extent you can call that deliberate misinformation, or whether someone simply cannot recall the exact figures from the news.’
Small amount of misinformation, sometimes major impact
Yet even limited misinformation can have consequences, warns Jansen. ‘A ripple effect can occur whereby a single incorrect message is shared on a massive scale. One example we found was the incorrect online claim that the developer of the colorectal cancer self-test had been on a long holiday to Bora Bora, which contributed to anti-big pharma sentiment. Posts containing rhetorical questions full of assumptions can be particularly harmful, as they appear reliable when they are not.’
Nevertheless, according to Jansen, positive online sentiment regarding screening programmes predominates. ‘We have been able to partially rule out the possibility that the low participation rates are solely the result of information people read on online forums and social media. We observed a positive trend in the data; people often encourage one another online to take part. When someone is negative, others respond with comments such as: “You really should go.” So people are also dispelling each other’s doubts online.’
Impact of people with lived experience
The research findings offer important lessons for health communication. Jansen highlights the impact of people with lived experience who openly share their stories. ‘That can have a significant effect. Personal experiences are more likely to resonate and appeal to people. Take singer Emma Heesters, who, following her own diagnosis, used social media to raise awareness of the importance of cervical cancer screening. This subsequently had a positive effect on the number of participants.’
Nevertheless, Jansen argues that the use of experts by experience must be approached with care. ‘We know from research that campaigns featuring people with personal experience are not always well received if they come across as too contrived. It often works better when someone like Emma Heesters shares a personal story on their own initiative.’
Jansen sees room for improvement, particularly in the area of communication regarding population screening programmes, for example at the RIVM. ‘Communication currently focuses mainly on turnout figures, but much less on the actual effects of population screening. For example, how many lives have been saved as a result. It is precisely that kind of information that helps people make a more informed choice and possibly convinces them to take the plunge.’
Want to learn more about this research? Read the recently published paper on the Twitter study (X) in JMIR Infodemiology.
Photo: Vitaly Gariev via Unsplash