People are searching for health information online, but is what they’re finding useful?

Dr. Julie Robillard.

Pictured: Dr. Julie Robillard; Image credit:  Ron Eichler

Most older adults are online, and many of them are using the internet to search for health-related information. But how easy to understand is the information they are finding, and who wrote it? Dr. Julie Robillard's new research, published this week in the journal Gerontechnology  (paywall) presents troubling insight into how online health information about dementia is being disseminated and understood.  

According to the Alzheimer Society of Canada, in 2016 there were an estimated 564,000 Canadians living with dementia, with around 25,000 new diagnoses each year. This year, the global cost of dementia will exceed one trillion dollars. Dementia is an urgent public health concern, with profound social and economic impacts.

As older people turn to online resources to inform their healthcare decision-making, it’s imperative that reliable, expert-driven information is accessible to a general audience. Dr. Robillard's recent study found that in general, online information about dementia written by experts or available from official sources is very difficult to comprehend; in contrast, information from non-expert resources, found on online discussion forums, for example, is much easier to read.

“There is little value in high-quality online health information if its intended audience does not understand it,” says Dr. Robillard. “The American Medical Association (AMA) recommends that health information should be written at a sixth-grade level for general information, and at a third-grade level for groups at higher risk of limited literacy, such as older adults with cognitive decline.”

“What we’re seeing is that online health information, when it is written by subject-matter experts such as physicians and researchers, is written well above the AMA’s recommended range,” says Dr. Robillard. “The trouble is, when content produced by experts is unreadable, people are turning to non-expert resources and websites, which are often easier to understand, but may host information of much lower quality.”

For those who do settle on expert-written web content, the risk of misunderstanding or misinterpreting the information may have negative consequences when using that information to make decisions about their health. Internet users with lower health literacy or with cognitive impairments could be more vulnerable to non-expert or predatory health information, such as advertorial content designed to sell supplements or services which may not be in their best interests.

“Expertise is only valuable if it’s communicated in a way that people can understand,” says Dr. Robillard. “Plain language communication for researchers and health care providers should be standard practice, especially when writing for people with potentially reduced health literacy due to dementia-related cognitive impairment.”

For those hoping to improve the accessibility of their health articles and literature, Dr. Robillard recommends testing writing samples using tools such as Online-Utility.org to help identify potentially problematic language and suggest ways to improve readability. 

“Ultimately it’s about knowing your audience,” says Dr. Robillard. “Do you want people to find the information you’re publishing useful? Then you have to translate your ideas into plain language.”

Communicating complex information in plain language can be challenging for those accustomed to speaking in scientific or clinical language, which is often peppered with subject matter-specific jargon that can exclude or alienate a more general audience. Plain language avoids jargon, uses short sentences, and emphasizes clarity and readability for all. For those not sure where to begin, the Province of British Columbia website offers a Plain Language Guide with tips and examples for communicating in plain language online.

“We want the work we’re doing to be well understood and useful,” says Dr. Robillard. “These new findings present an opportunity to identify areas where science and health communication is coming up short for our readers, and to find new ways to present our research and health advice in a way that speaks to older web users or people with lower health literacy.”