Health information on social media can be buried by engagement, researchers say
Researchers say platform incentives can make useful patient posts harder to find while rewarding content that draws reactions.
By Lucas Ferreira · Science & Environment Writer
3 min read
Health information social media users share from personal experience can be pushed aside when platforms reward posts that draw the most reactions, according to researchers Stefania Vicari and Hannah Ditchfield. Their research on online discussion of hereditary cancers found that people who post about illness often try to educate others and support patients, but attention-driven systems can limit who sees that material.
Vicari and Ditchfield, writing in The Conversation, described Amy, an Instagram user with about 5,000 followers who posts about surviving bowel cancer and living with Lynch syndrome. Amy said a bikini photo can receive thousands of views, while a post about living with a stoma may reach a much smaller audience.
A stoma is an opening in the abdomen that diverts waste into an attached bag. Lynch syndrome is an inherited condition that raises the risk of some cancers, often at younger ages; according to Southeast Genomics, about one in 400 people are affected, while only about 5% know they have it.
Why does useful health information get lost on social media?
Vicari and Ditchfield said social platforms are built around engagement, so posts that prompt comments, shares and reactions are more likely to be shown. Recommendation systems also play a larger role in deciding what appears in feeds, leaving users with less direct control over what they see.
That design can make visually striking, emotional or platform-savvy posts more visible than practical explanations of a condition, the researchers said. Amy told the researchers she gets drawn into the “numbers game,” while also seeing a possible upside: a more popular photo may bring viewers to her page, where they can find information about her condition.
The researchers said the people they interviewed had learned which posts travel farther and sometimes used that knowledge to shape what they shared. Some also adjusted visibility to reduce harmful comments, which the researchers said can remain unmoderated.
Vicari and Ditchfield said this can narrow public understanding of illness because the posts seen by the largest audiences may not give the most balanced picture. Their study found that highly visible posts can create limited representations of illness, even when people posting them are trying to help.
What should readers check before trusting a health post?
The researchers urged readers to ask who is sharing the information, whether they work with outside organizations, what sources they rely on and how their personal experience relates to the advice or claims being made. They recommended checking social media posts against reputable sources such as health professionals and advocacy organizations.
They also advised readers not to rely on social platforms alone for health information. Charity websites, for example, may provide material that social platforms remove, downrank or fail to show widely, according to the researchers.
Vicari and Ditchfield said users can also take steps to reduce unwanted exposure to upsetting material by muting words and turning off notifications. Their broader conclusion was that patients such as Amy often fill gaps between diagnosis, treatment and daily life, while the platforms they use are built to reward attention above usefulness.
This story draws on original reporting from Phys.org.