Unvalidated health information received from online forums could be placing people at risk according to recently published research from the University of Melbourne.

The study of nearly 600 postings in a range of online health communities (OHCs) led by Dr Reeva Lederman from the Computational Bioinformatics and Health Information Systems Research Group, found there are thousands of OHCs where people share their health experiences with other people who may have experienced the same condition.

“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.

“How Trust Is Formed in Online Health Communities” published in, Communications of the Association of Information Systems, examined postings from 12 different medical conditions from lung cancer to chronic diseases such as high blood pressure.

The research uncovered some significant findings about trust formation online. Users of these sites put a significant weight on what was called the Contributors Literary Competence- measured by punctuation, grammar and expression.

“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. the Department of Computing and Information Systems

“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.

OHCs can play an important role in creating a community for sufferers of health conditions, particularly where these conditions are chronic, isolating or stigmatising. However, while online lives are expanding in all areas, acting on online medical advice can have much more serious consequences than other online activities.

“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.