How to find trusted information online
When I feared my daughter might have hand, foot and mouth disease, I did what any modern-day parent would do.
I Googled it.
From the Mayo Clinic website, I quickly learned that this very common childhood illness is highly contagious, and so, it was likely she caught it from another tot in her playgroup.
The Centers for Disease Control and Prevention informed me that it’s not the same disease as the one among farmyard animals, known as foot-and-mouth disease, which quickly answered a concern among some mommies in our playgroup. No, there was no way she caught it from the goats and sheep at the petting zoo.
I cringed at the thought that my own daughter was now part of a horrible viral chain reaction—she caught the virus from her friend... who would she pass it to next? Fortunately, I found relief on the Internet. I read that after a week, the red bumps on her bottom, feet, hands and tongue would disappear, and she would be back to her toddling self.
Searching on the Internet also is like a chain reaction—a series of events in which each event is the result of the one preceding and the cause of the one following.
Find a search engine. Enter a search term. At the touch of a button, thousands of links to different websites appear. Click. Click. Click. Each website leads us to another and another. Before we know it, we’ve found and read so much information online that we are either experts in our own right or lost in misinformation.
How do we stay on the path to accurate information?
Pictures of smiling doctors, so it must be reliable...
According to Elmer Bernstam, MD, MSE, professor of biomedical informatics at The University of Texas Health Science Center at Houston (UTHealth) School of Biomedical Informatics, there is no way to guarantee accuracy of online health information. It doesn’t matter which search engine you use, if a particular website has won an award, or if one of your favorite sites is updated frequently.
Bernstam stresses that, unfortunately, there really are no good indicators that a website is going to be reliable. However, he recognizes that many people use the Internet for self-health and self-help searches.
“Searching online is a very common and popular thing to do,” says Bernstam, who also is a professor of internal medicine at UTHealth Medical School. “Whether or not it’s the best thing, that’s not clear. One of the gaps in knowledge is that we really don’t know how to best help people find the most accurate information.”
Bernstam and his wife, Funda Meric-Bernstam, MD, a professor of surgical oncology at The University of Texas MD Anderson Cancer Center, conducted a study of online breast cancer information where they reviewed hundreds of websites for 15 quality criteria, including display of authorship, date of creation and last modification.
Those are the usual quality criteria that people look for to determine the accuracy of a website. However, in the Bernstam study, quality criteria failed to predict a website’s accuracy.
“Our own research in several domains, both in breast cancer and complementary and alternative medicine, found that traditional advice just doesn’t work,” Bernstam says. “The usual ‘clarity in publishing’ rules, like making sure that an author is identified and conflicts of interest are disclosed, do not seem to screen out inaccurate or misleading information.”
Bernstam cautions that it’s hard to give general rules to distinguish a good site from a bad site, but his number one piece of advice is, “Start with a trusted site and go from there.”
He suggests starting with MedlinePlus. “It is published by the National Library of Medicine, a unit of the NIH (National Institutes of Health), and is therefore likely to be accurate. Experts have gone through those articles and have chosen ones that are accurate. By ‘accurate,’ I mean that they reflect the current scientific opinion.”
‘Take two search words and call me in the morning...’
We also should be careful with our search terms and preferred search engines because there is no guarantee that what they retrieve will be correct.
“The more colloquial your search term, the more likely you are to retrieve nonprofessional information,” Bernstam explains. “For example, if you say breast lump as opposed to breast neoplasm, you are more likely to retrieve all sorts of stuff that is not necessarily directed to the scientific community. Whether or not it is less accurate depends on the term.”
Furthermore, Bernstam notes that research into the comparisons of search terms (e.g., “broken wrist” versus “distal radius fracture”) shows that more sophisticated or professional queries retrieve “better” information. Presumably, he says, this information is oriented toward professionals versus consumers.
And, we might want to think twice before we let Google google it.
“Google rank does not seem to correlate with accuracy,” Bernstam says. “In other words, the fact that a website ranks highly on Google—first, second or third—in response to a search does not guarantee its accuracy. There’s no way to guarantee accuracy that we know of.”
From several websites, I learned that hand, foot and mouth disease begins with fever, followed by a loss of appetite and a rash. Dozens of sites reiterated these same symptoms, but was the information reliable?
Bernstam has preliminary data to support the idea that if multiple websites say the same thing, chances are it is accurate.
“We have some preliminary evidence that if you’re looking at a particular fact, and multiple websites agree, it tends to be more accurate,” he says, adding that people have an easier time answering very specific factual questions compared to questions that require a comprehensive understanding of a topic.
Bernstam also advises to be wary of sensationalist content. “Look for exaggerated claims like, ‘This always cures cancer,’” he says. “I would be skeptical of that.”
Finding similar experiences online
If I needed support from other moms or dads whose child also caught hand, foot and mouth disease, all I had to do was another online search. This time, though, I wanted websites with active communities or online forums where the users contributed the information.
This “second generation” of the Web, often referred to as Web 2.0, provides a lively portal for people to communicate actively and share information with others online.
“Google is still probably the most common way that consumers access online health information,” Bernstam notes. “There is a wide variety of general health and disease-specific sites and apps. Online communities have formed around a variety of conditions, and these are very interesting.
“In recent years, attention has shifted to user-generated content,” Bernstam continues, adding that he and his colleagues have some interesting findings in this area.
Most notably, he says, they found that in large and active online communities, information is generally accurate.
“Further, if inaccurate information is posted, it is usually corrected by subsequent postings,” he adds. “This “self-correction” seems to occur with or without a moderator.”
Bernstam and his colleagues studied self-correction in an Internet-based breast cancer forum.
Their objective was to determine the prevalence of false or misleading statements in messages posted by Internet breast cancer support groups and whether these statements were identified as false or misleading and corrected by other participants in subsequent postings.
They found only 10 out of 4,600 postings (0.22 percent) to be false or misleading and that participants rapidly corrected most of these inaccuracies in subsequent postings.
Active online forums aren’t the only way people can find or share their health info online. According to a survey by National Research Corporation, one in five Americans use social media sites as a source of health care information. Facebook leads at 94 percent. YouTube comes in second at 32 percent, and Twitter is third at 18 percent.
We often turn to social media sites not only as a source of health information but also to commiserate with others about our health woes.
“I think that people have a variety of needs,” Bernstam says. “Certainly, they need factual or medical information, but they also want to communicate with others who have similar conditions, to share experiences and to find comfort in the fact that they are not alone. The need or desire for social support is probably an important motivation.
“Additionally, there may be some questions that are better answered by someone who had first-hand experience with the problem (e.g., where to get the cheapest supplies in a particular city), and others that are better answered by someone with professional knowledge (e.g., data regarding efficacy),” Bernstam continues.
Of course, being so open with others about our personal health and shared health inquiries can carry some risk. This goes for social media sites as well as active online communities and forums.
“People should understand that when they go online, what they write will be very difficult to change or expunge,” Bernstam stresses. “They should be careful about what they choose to reveal online. It is very difficult to change your mind after you’ve decided to share something online.”
No harm, no foul?
There’s little harm in searching for our health information online. “We have relatively little evidence of harm from online information,” Bernstam says. “This may be due to under-reporting (e.g., harm not published) or actual absence of harm. We don’t know.”
In the future, Bernstam hopes to develop some methods to help consumers weed out inaccurate online information.
“One of the things we’re looking at in future research is verifying some rules of thumb or heuristics—some advice that we can give people that would work across different topics or different websites,” he says.
A service of the U.S. National Library of Medicine, MedlinePlus is a portal of health information with a wide variety of content for consumers and health professionals. It boasts more than 900 health topics, from diseases and conditions to health and wellness. Information on prescription and over-the-counter drugs, directories for doctors, dentists and hospitals and sections with health videos and interactive tutorials and games also are available.
Truly the nation’s medical research agency, the National Institutes of Health (NIH) offers health information from A-Z, as well as access to quick health links for children and teens, men, women, minorities, seniors, and wellness and lifestyle. Consumers also can subscribe to various newsletters and feeds via their preferred app or favorite social media site.
Sponsored by the Office of Disease Prevention and Health Promotion, healthfinder.gov is a gateway of health information specifically for consumers. The website has a helpful Health Topics A-Z section with a range of topics including nutrition and fitness, screening tests, public health and safety and many others.
The national Centers for Disease Control and Prevention has more than just health and wellness topics. A wealth of safety and prevention information is available, including emergency preparedness and response and information for staying safe at home, school and at work. Helpful information for travelers going abroad is always available under Travelers’ Health. Here, travelers can find disease outbreaks and recommended and required immunizations for entering countries.
The U.S. Food and Drug Administration protects our health by regulating the safety of food, drugs, medical devices, vaccines, blood and biologics, animal and veterinary, cosmetics, radiation-emitting products and tobacco products. It also is the go-to site for recalls and safety alerts. Those who want to learn on-the-go can download the FDA’s Drug Safety Podcasts.
Comprehensive cancer information for patients, family members and the public, the National Cancer Institute (NCI) has information about cancer treatment, prevention, genetics, causes and risk factors, screening and testing for detection and coping with cancer. LiveHelp is a special feature where users can have a confidential online text chat with a cancer information specialist from the NCI’s Cancer Information Service.
Cancer patients don’t have to face their disease alone. The American Cancer Society offers support through its Cancer Survivors Network that helps to connect patients with other survivors. Patients and family members can find information on specific types of cancer, treatment and coping with side effects, as well as access Treatment Tools with guides and links on how best to cope with their cancer treatment.
ClinicalTrials.gov is a great resource for finding clinical trials in the United States and around the world. Patients can conduct simple searches on their medical conditions or more advanced ones to find relative studies and their locations.
For information on complementary and alternative medicine (CAM) or to find alternative forms of therapy, consult the National Center for Complementary and Alternative Medicine website. Searching is available by disease, condition, treatment or therapy. Help on selecting a CAM practitioner also is provided.
Details on virtually every kind of common or complex illness are at the Mayo Clinic website, a health compendium produced and reviewed by the Mayo Clinic. Healthy lifestyle topics, tests and procedures and prescription and over-the-counter meds are some other features of the site, as is a helpful First Aid section. To find out what’s causing that runny nose, check out the interactive Symptom Checker for adults and kids.