From blogs to news sites to WebMD, health information is everywhere on the internet. And while it is easy to believe there is conflicting information about diets or exercise routines, one would think information on serious conditions, such as Idiopathic Pulmonary Fibrosis—a type of lung disease that can affect one’s ability to take in oxygen—would be accurate. Unfortunately, Dr. Chris Ryerson—along with co-authors Drs. Jolene Fisher, Darra O’Connor, Alana Flexman and Shane Shapera—found that’s not the case.
Q: What was your strategy to sift through all the information on the internet?
A: Misinformation is a major problem for patients with IPF. We determined the best way to gauge the accuracy of online information, would be to search based on a list of key information that IPF patients would search for themselves (tests, treatments, prognosis, etc.). We looked at how easy it was for them to understand, how closely the information followed established international guidelines on the diagnosis and management of IPF, where the website came from and who published it. We searched the three most common English search engines (Google, Bing and Yahoo) for “idiopathic pulmonary fibrosis” and looked at the top 200 results for each. After excluding sites requiring payment to access or sites clearly targeting health professionals, there were 181 websites remaining.
Q: What were some of the more alarming things you found in your study?
A: First, we identified an overall lack of information as well as a significant amount of bias. There weren’t any sites that provided a comprehensive and unbiased summary of the important details related to IPF.
Second, we found the majority of websites were written at a college reading level, despite recommendations that written information for patients should typically be at a grade 6 reading level.
Third, and most concerning, was the amount of misinformation. Many sites recommended alternative therapies that lack evidence, and a lot of these sites were created by the companies making these products. In addition, about a third of sites recommended medications that are proven to be harmful. Furthermore, the sites most likely to recommend these harmful medications were health care organizations, academic institutions and non-profits. This likely arose from these websites being created many years ago without adequate long-term maintenance and regular updates when new information became available.
Q: What are signs a website’s information is not reliable?
A: Unfortunately, we found there is no simple or direct way of identifying which websites provide reliable information. We’ve conducted similar research on other diseases and had similar findings. I would also be very cautious about websites that rely heavily on personal stories or anecdotes, rather than sound evidence from research studies that have been published in peer-reviewed journals.
Other things to look for are whether the website identifies who is writing and publishing the site, what specific sources of information they used, when the website was updated, and whether the opinions presented are balanced, explaining both upsides and downsides of potential options.
Q: What advice do you have for people wanting information about a condition or disease?
A: When you need information or advice about your health, the best thing you can do is talk to your doctor or another qualified health professional. If you find questionable information online, feel free to print it off and bring it to your next appointment to discuss.
As a doctor, I know that some of what my patients are reading online won’t agree with what I am telling them. Much of this disagreement relates to nuances that apply to a specific patient or situation, and what the patients are reading about online doesn’t actually apply to them. In most situations, the doctor is fully informed of the topic that patients are reading about, and has already decided that there are specific reasons that these online suggestions don’t apply.