by Jody Cole and John Fulmer

As a healthcare professional, you know the importance of useful information that patients can easily comprehend. You might access the same information source that has served you many years; it’s reliable, and its format works for you. Or maybe it’s outdated and you’re looking for new ways of conveying information. Maybe your patients want something newer or different, too.

You don’t have to look further than a computer screen. The government has put your tax dollars to work, and the amount of healthcare content it publishes on the web is impressive and extensive. It can sometimes seem overwhelming, too. This is why we’ve researched dozens of sites and asked two professionals which healthcare sites they like in terms of quality information and ease of navigation.

“Government sources are almost always free and also nearly free of bias because they’re not tied to commercial healthcare enterprises such as pharmaceutical companies.”

The internet has been a boon for patient education and government agencies. Most of them, under the Department of Health and Human Services (HHS), offer an abundance of resources that help educate patients on particular diseases and conditions.

They guide those who need an exercise regimen or better nutrition, and their websites cover topics as wide-ranging as protection from toxic household products to whether St. John’s wort is a viable alternative medicine. Government sources are almost always free and also nearly free of bias because they’re not tied to commercial healthcare enterprises such as pharmaceutical companies.

MedlinePlus sets the standard

MedlinePlus, the consumer health information portal of the National Library of Medicine (NLM), is mentioned often as the go-to site for professional educators. Sheila Snow-Croft, Outreach Education Coordinator, National Network of Libraries of Medicine (NNLM), Southeastern Atlantic Region, calls it her “one-stop shopping center.”

Snow-Croft, whose regional office is at the University of Maryland-Baltimore, started as a librarian with no medical background at the University of Alabama-Birmingham Health Sciences Library. Most of the questions she fielded, at first, sounded Greek to her.

“I’d go to MedlinePlus and research the question and educate myself before I searched the professional literature,” she said. “And it never failed me. For me, it’s the best out there in quality of information that’s easy to navigate.”

“Sheila Snow-Croft, Outreach Education Coordinator, National Network of Libraries of Medicine, Southeastern Atlantic Region, calls [MedlinePlus] her one-stop shopping center.”

Each of the more than 800 health topics in MedlinePlus is broken up into segments of information. There are suggested starting points and then basic information, multimedia sources such as tutorials and videos, research, references, and age-specific resources.

The pages provide links to:

• local services and providers
• primary National Institutes of Health (NIH) organizations
• resources in English, Spanish, Russian, and various Asian and Arabic languages

For professional-level literature, she goes to PubMed, a database containing over 19 million citations to biomedical articles, some of which link to full-text articles: “Whether or not you can get the full text of the article, you can at least go in and find out what’s out there,” she said, “and then go through those libraries to get the information.”

A second opinion

Our other professional, Cathy Mauch, ARNP, MS and Education Specialist-Patient Education in the Clinical Education Department of St. Joseph's Hospital, Tampa, Fla., sent us an e-mail list of sites that she consults most often.

“These sites,” she wrote, “offer firsthand, quality information, recognized as very credible and reliable. They are updated regularly and specialize in patient education—so they are written at an appropriate level and address most commonly asked topics. Resources are available in English and Spanish. They permit use and reproduction for educational purposes free of charge and they’re convenient to use.”

As with Snow-Croft, one of Mauch’s go-to sites is MedlinePlus which is hard to miss using Google. It turns up in the top ten results for many diseases and conditions.

Looking for some consensus on quality sites, we started at the Public Health Information and Data Tutorial, a clearinghouse for patient-education sources sponsored by the Partners in Information Access for the Public Health Workforce (PHP), a collaboration of government agencies, public health organizations and health sciences libraries. The tutorial immediately linked us to MedlinePlus, which it calls a premier site “to help find health information of interest for the general public.”

Other sites to see

Snow-Croft, by the way, also likes the PHP site and said, “They have organized that information down to perfection.” According to the PHP website, the tutorial, which is based on the organization’s training manual, “provides instruction for members of the public health workforce on issues related to information access and management.” Neither the tutorial nor the manual has copyright restrictions and users have the freedom to customize or copy the contents.

The tutorial has compiled a list of links to the most commonly referenced healthcare sites, such as those for the Centers for Disease Control and Prevention (CDC), NIH, and the very patient-friendly healthfinder.gov. The tutorial calls healthfinder.gov “a key resource for finding the best government and nonprofit health and human services information on the internet.” This site provides more than 1,700 health-related links and much of its content is in Spanish.

NIH’s traditional and cutting-edge resources

A number of NIH institutes and centers are mentioned in the tutorial itself and a full list of them can be found here. The NIH, which began as a one-room laboratory in 1887, is now the United States’ leading research center and a resource for health educators. The NIH has 19,000 employees and a $30.5 billion budget. In addition to its website, newsletters and other traditional media, it disseminates information through podcasts, a dedicated YouTube channel, RSS feeds, Facebook and Twitter, which has more than 10,000 “followers.”

“The CDC site receives 481 million page views annually, and users conduct 2.6 million searches a month on average.”

Both Mauch and Snow-Croft singled out the NIH and CDC sites as excellent information sources. Their up-to-date approaches to publishing content through social media are in tune with Snow-Croft’s methods. She sees Facebook and Twitter as invaluable means of networking and data distribution. Her office has phased out a listserv which she calls “outdated technology.”

“Twitter has helped me in leaps and bounds with staying on top of what is going on. I have various methods of handling the information overload, but the people on Twitter have been the single most helpful resource for handling that over the last six months. I’m not sure that all the librarians in my region are convinced, but one by one, I’m trying to make them understand,” Snow-Croft said with a laugh.

The power of the CDC

The CDC, another healthcare behemoth, got its start in 1946 with a $1 million budget and less than 400 employees. Now with 15,000 employees and $8.8 billion in annual funding, the CDC is a huge supplier of consumer health information. Want proof? A downloadable PDF statistics sheet will tell you their site receives 481 million page views annually, and users conduct 2.6 million searches a month on average. Click here.

But again, the amount of internet healthcare information is mind-boggling. Much of it is repeated from website to website and several larger agencies are umbrella organizations: The NIH, for example, has 27 institutes and centers, and the CDC is divided into seven large bureaucratic levels under which are even more divisions, most of them with their own sub sites. State health departments have their own sites, and they compete with or complement the dozens of commercial sites and quasi-governmental agencies.

What to look for

“This is the hardest question,” Mauch wrote when asked if the data deluge could be a problem. “Often, the information is repetitious. Research to find relevant information free of copyright restrictions is often time-consuming. Reprinting information is less convenient than using a preprinted handout or booklet and, at times, just as costly as purchasing information from a vendor.”

So how does Mauch discern what makes quality health information? “Two of the main considerations: they are recognized credible (leaders in their fields) and updated regularly. However, most of the current vendors of patient-education materials also provide quality up-to-date patient education material in an easy-to-read format and often reference these primary sources.”

“Cost and convenience may become the deciding factors. They do print in English and Spanish, although sometimes it is difficult to find the same content in Spanish. We use the same selection process as when approving staff developed or purchased info.”

Snow-Croft was in accord. “That information overload does drive people crazy,” she said and referenced MedlinePlus again, praising its organization. “It can help dispel some of that overwhelming feeling of so much coming at me, and how do I choose?”

The vetting process

To alleviate the confusion, NNLM offers a comprehensive online teaching resource called “From Snake Oil to Penicillin: Evaluating Consumer Health Information on the Internet.” It points out that because web content is unregulated, “anyone can publish anything on the internet. There is sound medical information on the internet along with dangerous information. You need to be able to tell the difference!”

“Criteria sheets” or selection policies can be found on many government sites. Snow-Croft again emphasized the value of the kind of vetted information found on dot-gov sites. As a librarian, her evaluation skills can help steer patients in the right direction. Consumers, she said, often pick the first site that pops up in a Google search.

“I can read a website and I’m not going to be sold by what could be biased information. I don’t think most consumers have that,” she said. “Web sites and blogs that have personal stories can be fantastic resources, but you just need to be able to pull out what could be biased.”

As for sites that ask for credit card information: “You should back off and reconsider,” she said, adding that government sites are very proactive. “You know they’ve been vetted. They’re never going to ask for personal information; they’re never going to try to sell anything; and they never have any sponsorships from pharmaceutical companies or other corporate interests.”

Snow-Croft concludes, “I use commercial sites; don’t get me wrong, but the more I use the ones that have been vetted by the NLM or NIH, the more I see the difference.”