This is the latest in a series on ways to better navigate the health care system.
When explaining how to find trustworthy sources among the troves of medical information available online, Wendy Urciuoli sometimes advises people to think of the grocery store checkout aisle – the ones with the tabloids and their outlandish headlines.
“Chances are you could easily back away and go, ‘Oh, that’s just nonsense,’” said Urciuoli, the Healthnet outreach librarian at the Lyman Maynard Stowe Library at the UConn Health Center. “But when they’re on the Internet, they don’t apply that same filter and say, ‘That sounds too good to be true.’”
In fact, some doctors advise newly diagnosed patients to avoid searching online to learn about their condition. But Urciuoli noted that understanding how to find reliable information is increasingly important for patients.
“The changes in health care right now are putting a lot of the onus of finding information on the patient’s shoulders, and it’s becoming the patient’s responsibility to educate himself or herself about their health conditions, and to remember to bring up questions when they’re visiting their doctors’ offices,” she said.
So what’s the best way to find reliable medical information online? Here are some tips from Urciuoli and other librarians who specialize in medical information.
Use a health-specific search engine.
Google is quick and easy, but Urciuoli said using a specialized search engine can produce more high-quality, reliable results.
Her first stop is often MedlinePlus, which is run by the National Library of Medicine, a part of the National Institutes of Health (there’s also a Spanish-language version). Librarians vet every website linked from MedlinePlus. As a result, Urciuoli said, users can both find reliable information and learn about other sites that are considered reliable sources. (The site also has dedicated pages for specific health topics.)
Another option Urciuoli recommends is Healthfinder.gov, run by the U.S. Department of Health and Human Services.
Although MedlinePlus and Healthfinder are government sites, the information they provide is not limited to government sources, noted Mark Gentry, clinical support librarian at Yale’s Cushing/Whitney Medical Library, who also recommends both sites.
Another resource Gentry recommends: The Medical Library Association, which evaluates websites based on factors including credibility, audience, purpose, design and interactivity. The group maintains a list of websites deemed “particularly useful” for general health, breast cancer, diabetes, eye disease, heart disease, HIV/AIDS and stroke. You can find them here.
Make your Google search smarter.
If you’re going to use a general search engine like Google, Urciuoli recommended using advanced search features to filter your results. (To find them from the Google homepage, click the “settings” link in the bottom right corner.)
What filters can be useful?
One is to narrow searches by domain, the .com or .gov at the end of a web address. Sites that end in .edu or .gov come from academic institutions or federal, state or local governments, and are more often reliable than other sites, Urciuoli said.
Another way to pare down results and increase reliability: Search only for sites that have your preferred topic in the page title, rather than anywhere on the page. (You can do this by using the “terms appearing” option in Google’s advanced search settings.)
Know how to evaluate the reliability of a website.
What if you come across a website and want to know how reliable it is? Librarians recommend asking a few questions.
“You need to really consider who is the provider of the site,” said Stephanie Dennis, who heads the MedlinePlus team at the National Library of Medicine. “Where is this coming from and why are they providing it?”
That means trying to determine the site’s purpose – education? Selling something? – and the qualifications of those running it.
Look for an “about us” section or link to find that information.
“You should be able to identify these things,” Dennis said. “They should have some mechanism to contact them and they should be very forthcoming about who they are and why are they doing this.”
Similarly, Dennis suggested, pay attention to whether there’s advertising and, if so, if it’s clearly labeled.
“We’ve all seen sites where it’s really one big advertisement, but you don’t know it, it just looks like it is just an informative piece of information that is updating you on something but it’s really an advertisement for a particular treatment or medication,” she said.
Does the site have a bias? Fonts that scream at you, many exclamation marks, outrageous headlines or “gut-wrenching” photographs are signs to watch for, Urciuoli said.
“Those are kinds of things that people should step back and go, ‘Oh, you know what, it sounds like the person is not presenting information objectively,’” she said.
Is the information current? Look for the most recent revision date. If articles are posted on the site, are they recent or a decade old? If the links on a site are broken, it’s a sign that the site isn’t revised regularly, Urciuoli said.
Know the limits of what you’ll find.
Even if you have a certain condition, the answers you find online might not apply to your specific situation, Gentry said.
Gentry sometimes gets questions from people and finds they don’t know enough about their diagnosis for him to provide specific information. Some cancer treatments, for example, are only effective for people with certain genetic markers.
“There’s a big move to personalized medicine now, which is really great, but I think it makes understanding your condition even harder than it was before,” Gentry said. “But maybe it makes it more important, because now there may be a therapy that doesn’t work for 90 percent of the people, but if you’re in that subgroup, it may be a really great thing for you, but you’re only going to know that by working with your doctor.”
When you’re looking for professional literature.
Gentry recommends MedlinePlus and Healthfinder to family and friends as a source for “good, basic information that will lead to other things.”
For those seeking leading-edge treatments, it often takes a look in professional literature, Gentry said. “It’s fairly hard to wade into that stuff, but you can do it,” he said.
He recommended PubMed, which is also run by the National Library of Medicine, and Google Scholar.
“How easy it is to find the thing that really fits your diagnosis, and how easy it is for you to be able to interpret it and understand the statistics behind it, is another question,” he said.
Another consideration: What’s the privacy policy?
You might be alone with your computer, but information you enter online can be tracked – and valuable to marketers.
“A lot of times that doesn’t even occur to people that when you’re on a website, if you provide any information at all, how that information is going to be used,” Urciuoli said. “Most reputable websites have a privacy policy link.”
Consult a library or a librarian.
Your local public library could be a good source for databases and books to help answer questions – or to find a librarian who can point you in the right direction.
The UConn Health Center’s medical library in Farmington is also open to the public.
For Connecticut residents, the UConn Health library’s Healthnet program provides an additional service. People can call in with medical questions, and medical information professionals will research the topic and compile a customized information packet that they can either mail to the person or provide for the person to pick up. The service is free, but only available to state residents. (They’re available at 860-679-4055.)
Gentry said Healthnet is especially good for people who don’t have Internet access or who might need help using the available resources.
Have a health care topic you’d like some help understanding? Email Mirror health care reporter Arielle Levin Becker at alevinbecker@ctmirror.org.