Key points to know:

• Not all sites are created equal – check the domains (.edu, .gov, etc)
• Check who is running the site and why
• Look for the most up-to-date information
• Are the research studies published in peer-reviewed journals?
• Do any of the research paper authors have a conflict of interest?

How to Read Research and Evaluate Websites

Many people with chronic conditions try to do as much research as they can. They want to learn more about what might cause it and what might treat it. This is great because it helps people become more effective patient advocates. But it’s important to know how to look for that information, so as not to be side tracked by inaccurate or misleading information.

Anyone can start a website. Because it’s so easy, someone can start health-related sites just to help inform people or to bring a community of people together. But someone can also start a site to push an agenda. Sites can sell unproven products or spread misinformation or disinformation.

When looking at academic research, there are also things you need to look for. Now that so much research is online, it’s so much easier for anyone to find latest studies and papers. But there are drawbacks. Unless you know how to read research, it’s not easy to understand what the researchers are saying. At the same time, there’s been an explosion of published papers that aren’t peer-reviewed or are “pre-published.”

As a result of this online research explosion, some people are taking away the wrong messages from articles. This can be dangerous. If you are looking for research about burning mouth syndrome and you find some studies, here are some things to look that will help you decide if the article is valid and worth your time.

Evaluating websites

Domains

When I’m looking for health-related sites, the first thing I look for is the end of the URL. In the US., I look for sites that end in .edu and .gov. The first means it’s associated with an academic institution, like Harvard University. The latter means it is a U.S. federal or state government site.

In Canada, if I want an academic institution, like McGill University or the University of Toronto, I look for the name of the university in the URL, followed by .ca. For a government site, it’s a bit more complicated. Some of the Canadian government sites end in .gc.ca (as does Environment Canada) but others have endings like Canada.ca (like this site that has the Canada Food Guide).

Next I look for sites that end with .org. This one can be a bit tricky so you need to really check the site out. It used to be that only not-for-profit sites could get a .org domain. So patient advocacy organizations like Sepsis Alliance (sepsis.org) and institutions like the Mayo Clinic (mayoclinic.org) would have a .org domain, but this has changed and now anyone can set up a .org site.

Patient advocacy sites can be a treasure trove of information but still need to looked at with a critical eye. Some advocacy sites can be slanted towards what the owners or founders want portrayed.

Finally, sites that end in .com can be useful and accurate but these are the easiest and most common domains in North America, so anyone can set up a .com site.

Who is publishing the site?

Sites should have an About page. It could be about the owner or the site itself, but there should be one. Who owns the site? Do they list a mission? Who is writing this information and why? Do they have credentials?  Might they have an agenda? For example, if a new medication comes out, the pharmaceutical company will likely by that drug’s name as a domain name. The site is then a full-on pro medication site, probably with little negative information about it.

How up-to-date is the information?

Some sites have old content and never update their information. This can be dangerous with health sites if they are talking about medications and treatments because so much can change so fast.

Where do they get their information?

When the authors talk about research, where are they getting that information from? Are they getting it from online news stories or are they getting it directly from the researchers or their papers? Do they link to facts or have footnotes so you can double check the information? Sites that only refer to mainstream media stories are not doing actual research into the topic but relying on others to do the research. But who’s to say that the news story is correctly interpreting the original research.

Are they trying to sell you something?

Sites that are trying to sell you a treatment or cure are sites that are suspect. They don’t want you to read negative things about their products, so none will be presented.

“Always” and “never” sites

Stay away from sites that claim declarative content. This means that the owner writes about things that always happen or never happen. Or something that is 100% reliable or safe. Nothing is absolute.

Evaluating Research

There are some guidelines that may help you understand if a study or paper in a journal is reliable and provides good, solid information. The most important thing is how is the conclusion presented? Is it a too-good-to-be-true conclusion? Is the media blowing it up as the next best thing? Very few studies are that dramatic. So keep this in mind when reading.

What journal published the article?

Where was the article published? There are hundreds of medical journals online but they aren’t all equal. You want to know if the articles you’re reading are peer-reviewed. That means the articles have been read and scrutinized by the authors’ peers and the peers feel that the studies were done well enough and the conclusions were accurate. Of course, nothing is perfect and we know that some peer-reviewed articles are retracted (pulled out) after the fact, but it is the best way we have to determine if an article is likely accurate. Examples of peer-reviewed journals are:

• The New England Journal of Medicine (NEJM)
• The Lancet
• JAMA
• Nature Medicine

Who are the authors?

If you do an online search for the article’s authors, can you find if they’ve written others on the same topic? If so, in what journals? What specialities are the authors in? Is a neurology piece written by neurologists? Or a specialty that has nothing to do with neurology?

All authors should disclose if they have any conflicts of interest. For example, if they’re writing about a drug that can help cure cancer but they receive funding from a major cancer pharmaceutical company, this is important to know.

What kind of study was it?

There are several types of studies and some are more accurate than others. This article from InformedHealth.org explains them well.

How large was the study?

A study that says “X Drug Works Well for Patients with ABC Disease” will be much stronger if there were thousands of patients in the study than if there were only 100. Smaller studies are interesting and shouldn’t be ignored, but they should be taken with a grain of salt.

Studies looking at rare conditions, like BMS, can’t be large because there just aren’t the patients to fill the slots. So although smaller studies can have flaws, we do have to take the condition into account.

How old is the study?

Research moves fast in many areas of medicine, not so much in others. But it’s still important to know how old a research article is before believing that its results are appropriate. For example, a study on antidepressants done in the 1990s is likely very out of date because so much has changed in antidepressant treatment over the past few decades. Always check the publication dates.

Did the authors point out limitations to the study?

Limitations are things that limit how effective the study might be. For example, if a researcher was studying a drug’s overall effect on blood pressure but only studied it among people who didn’t have any chronic illnesses, that would be a limitation. How would the drug work if the patients had diabetes or Crohn’s disease? All studies have some sort of limitations, such as they were done only in an urban setting or the sample size was small. This needs to be taken into consideration.

Doing research can be interesting and I don’t want to discourage anyone from doing their own. But please be aware of the pitfalls and how to judge if information is true or misleading.