Users of online health communities (OHC) are being reminded that the advice supplied on the websites is not that of a doctor's, and so should be consumed with a grain of salt.
While OHCs can play important roles in building support networks for people suffering from conditions that may be chronic, isolating or stigmatising, according to research published by the University of Melbourne, acting on medical advice distributed online can have serious consequences.
A study of nearly 600 postings across a range of OHCs led by the Computational Bioinformatics and Health Information Systems Research Group's Dr Reeva Lederman found there are thousands of OHCs in which people are sharing their health experiences with people who may be experiencing the same condition, many of whom are not consulting medical professionals at all.“Medical consumers are not just using the online community as an adjunct to conventional medical care, but many have moved their regular doctor out the equation altogether,” Dr Lederman said.
The research, titled “How Trust Is Formed in Online Health Communities”, analysed postings from 12 different medical conditions from lung cancer to chronic diseases like high blood pressure.
The research uncovered important findings about trust formation online - namely that OHC users put a significant weight on what was called the Contributors Literary Competence, which is measured by the punctuation, grammar and expression demonstrated by other users.
“Testimonies on online health communities like
Patients Like Me, show patients using this site have a diverse range of conditions of varying severity, but none of them use the word “doctor” in talking about who helped them solve their medical problems,” Dr Lederman said.
“However, they talk about the support they have received from other members of the community, of the range of tools on the site that they can use to track their progress. They look for specialists in the area of their condition with the help of other lay members of the site.”
While a contributor’s literacy may demonstrate a certain level of general education, it does not in any way support their ability to give sound medical advice.
“We need to expand work in demonstrating best practice for OHC sites and how they can work with systems that provide quality professional advice,” Dr Lederman said.
“It is a basic principle of medical care that treatments need to be individualised and small differences in patients can be very significant to outcomes. This is what is missing from OHCs,” she said.
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