Six in 10 adults in the United States are living with at least one chronic disease. Many of them are augmenting doctors’ orders with online advice, seeking medical information from websites such as WebMD, DailyStrength and YouTube.
New research from Michigan State University, the University of Utah, the University of Arizona and Carnegie Mellon University examines how people process medical information online to manage their chronic conditions, taking a specific look at YouTube videos on one of the most prevalent chronic diseases in the country: diabetes.
The findings reveal a literacy divide in online users. Well-informed patients are engaging with videos that contain more medical information; uninformed patients are tuning out.
“Access to information online can be a good thing for people to experience convenience and diversity of content, but issues can also arise with the level of medical information presented,” said Anjana Susarla, associate professor of accounting and information systems, who coauthored the study.
The research paper, “Go to YouTube and Call Me in the Morning: Use of Social Media for Chronic Conditions,” was published in the latest issue of MIS Quarterly, one of the top information systems journals.
As noted in the paper, estimates show that 90% of adults “lack the ability to understand basic medical information and engage in self-care and chronic disease management,” posing a major problem.
“Low health literacy hinders patients’ ability to search for medical information online, making patients with limited health literacy even more vulnerable to engage with misleading videos,” Susarla said.
In addition, videos on YouTube differ in how well they communicate the medical information and hold viewers’ attention. There is no guarantee that videos on YouTube are medically accurate or timely; people could simply be viewing what’s popular instead of what’s relevant.
To better understand the issues surrounding medical information and user engagement, the researchers studied nearly 20,000 videos uploaded from a variety of sources like the Mayo Clinic, the American Diabetes Association and the American Nutrition Association, as well as from individual users. They employed deep learning methods to identify and extract more than 200 medical terms encoded within the content.
Then they classified the videos based on how much medical information they contained, looking at how terms were presented through text and images. Finally, they measured levels of collective engagement with videos based on likes, dislikes and comments.
“We found that if videos contain low or no levels of medical information, people do not engage with them,” Susarla said. “This also implies that videos that contain valuable medical information are more engaging for users.”
However, at the same time, viewers who watched YouTube videos with greater medical information struggled to maintain attention. Given the low levels of health literacy, this struggle could be the result of viewers being intimidated by the information presented or not understanding the terms used.
“As health care organizations and others produce educational materials for patients, they should think not only about what medical information to deliver but also how to meet the interest, information needs and health literacy levels of the consumers,” Rema Padman, professor of management science and healthcare informatics at Carnegie Mellon University’s Heinz College and coauthor of the paper, suggested. “Creators of these materials should use technology and online solutions to reach patients with complex chronic conditions with personalized, contextualized and just-in-time content.”
In the paper, the researchers propose guidelines for individuals and health care practitioners who create content for YouTube videos so they can produce engaging and relevant materials for patients. They recommend a method of automated video retrieval that would accommodate patients’ varying levels of understanding of medical information and engagement.
“Our study helps health care practitioners and policymakers understand how users engage with medical information in video format,” Padman said. “It also contributes to enhancing current public health practices by promoting guidelines for the content of educational videos that aim to help people cope with chronic conditions.”
Susarla added, “Access to relevant and engaging medical information online has the potential to empower people to be active managers of their conditions, accepting their illness and experiencing greater confidence about their treatment. Our research illustrates the crucial need for medical informational materials to always have patients’ needs in mind.”