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Medical professionals may need to take a better look at the integrity of medical information online. ÐßÐßÊÓƵ University professors – Drs. Monica L. Bellon-Harn, Vinaya Manchaiah and Lekeitha R. Morris – found a widespread need for knowledge-driven information online, specifically related to autism.

Their research findings titled, “A cross-sectional descriptive analysis of portrayal of autism spectrum disorders in YouTube videos: A short report,” was recently published in “Autism,” a top-tier journal in the discipline and is one of numerous studies published in the area of consumer health informatics and digital health.

“We are looking at patients who use the internet to find health information related to autism and see how their perceptions are shaped,” said Harn, who is the chair of the Diane H. Shaver, professor in the LU Speech and Hearing Sciences Department. “We hope this information can help us to better create materials and information available for people with issues in healthcare and disability.”

In studying the type of information available to patients over the internet, Harn and her collaborators – Manchaiah, Jo Mayo, endowed professor and associate professor of audiology and Morris, associate professor in the Department of Speech and Hearing Sciences - found a need for professionals in the space of online medical knowledge.

The research found that parents of children with autism are going to YouTube looking for information. The collaborators also discovered that the number of people who use the internet to find information on health issues is markedly rising.

“This dramatically changes the relationship between the professional and the patient,” said Harn. “The medical world is falling behind in the online space, leading to a spread of misinformation.”

 The videos the researchers reviewed regarding autism were videos discussing signs and symptoms, not assessment or management. “The understandability and actionability, how well the videos lay out information and gives the viewer a course of action, were low so we concluded that there is a space for professionals to use YouTube and create materials that might help parents in areas the current popular videos do not,” said Harn. “Many of those posting on social media are not professionals, so we need to be a part of this digital conversation.”

Although the researchers did not look at misinformation in this study, it is something they plan to research in the future. “This research brings up many questions about how media, especially the internet, play into people’s understanding of their conditions before they even see a professional,” said Harn. “But also, in which medical professionals can use media to combat misconceptions and help people.”

Since their research was over an unconventional, and now emerging, aspect of the speech science field, many journals turned the work away.

“To have a widely read and influential journal like “Autism,” publish our work is very validating,” said Harn. “I hope other researchers in the field see this work and begin to consider some of the issues that may not deal specifically with biology or medicine but instead make us ask questions about how we portray ourselves and communicate with our patients.”

This research resulted from the Presidential Visionary Initiative President Evans began in 2016.