When Amy posts a photograph of herself on Instagram, she knows what will attract attention. A picture of her in a bikini may receive thousands of views. A post explaining the realities of living with a stoma (an opening in her abdomen that directs waste to a bag attached to it) may reach far fewer people.
Authors
- Stefania Vicari
Professor in Digital Media and Society, Loughborough University
- Hannah Ditchfield
Research Associate, Digital Media, Loughborough University
"I get caught up in the numbers game like anyone," said Amy. She has around 5,000 followers on Instagram, which is a respectable following considering that she creates content about surviving bowel cancer. Amy, like many others we have spoken to, uses social media to share her experience, connect with others and raise awareness. But what happens when sharing health information becomes tied to the rules of social media attention?
Finding others facing similar situations can be life-changing for people with rare or rarely discussed conditions. Amy has Lynch syndrome, an inherited condition that substantially increases the risk of developing certain cancers, often at a younger age. About one in 400 people are affected by Lynch syndrome, yet only 5% are aware of having it . Amy's posts provide something many people with Lynch syndrome struggle to find: accessible information and the experience of someone with the condition.
In our research into how hereditary cancers are discussed online, we spoke to dozens of people around the world who share their experiences of illness on social media. They all told us that their primary goal is to educate others and support their peers.
Some want to represent their communities, especially if they feel these communities are underserved by the healthcare system. Kiara (not her real name) told us: "If you are a black or brown person and you don't see yourself represented, then the immediate thought is that, 'Oh, this is not something that we do, this is just something that white women do'."
Those who post about their experiences of illness often offer information that would be extremely useful in the public domain. Yet the way social media platforms operate can make it difficult for even the most useful health information to reach the people who need it.
Social media platforms are designed around engagement: posts that generate reactions, comments and shares are more likely to be shown to users. Users have increasingly less influence over what appears in their feeds as recommendation systems decide which posts are shown to users. This means that engagement-savvy posts are more likely than others to appear on feeds and searches and face less risk than in the past of being fact-checked and moderated.
Those who share content on social media and want their content to be seen are usually aware of how the platforms work and try to make the most of it. Amy told us: "I'm like, that post is so important and then my dumb post of me in a bikini gets so many more views. I get mad about it, but I think to myself - Hey, if that bikini picture makes them go, 'What is that on her stomach?', and brings them to my page, they're going to see the information."
Like Amy, the people we spoke to have learned what makes their posts more visible and use this knowledge to curate their content. Sometimes, they even use it to control its visibility and reduce the risk of receiving harmful comments, which can go unmoderated . But this also means that the posts reaching the largest audiences may not always provide the most balanced picture of a health condition. We found that highly visible content creates narrow representations of illness.
What good content looks like
The problem is amplified because social media companies reward content creators whose posts generate high levels of engagement. This does not mean that all users who receive financial rewards are "bad influencers" - but they operate in a profit-driven environment with limited fact-checking and inconsistent moderation. In other words, they deserve scrutiny.
Based on our research, we have put together a set of recommendations to promote helpful health information on social media. If you come across someone sharing their experience, ask yourself: in what capacity do they share information on social media? Do they collaborate with external organisations? What sources do they rely on? How is their personal experience relevant? Use knowledge from reputable sources (health professionals, advocacy organisations) to cross-check the information they share.
Don't rely on social media alone. Pair information you find on social media with other trusted sources. Charity websites, for example, can host content that would be removed or suppressed from social media platforms. Also, remember that platform algorithms can throw content in unexpected ways - and this can be emotionally triggering. You can control your feed by muting words and turning off notifications as a way of engaging with content on your own terms.
People like Amy are filling gaps that many patients experience between diagnosis, treatment and everyday life. But it may be harder to see them because social media are designed to reward attention over anything else.
This piece is based on research that received funding from the Leverhulme Trust.
Hannah Ditchfield is affiliated with The Women's Health Visibility Alliance.
