The internet is such a part of our lives that we don’t even notice it sometimes. Many of us use it to watch television shows or movies, listen to music, connect with friends and look up information. And lots of us also use it for online medical research to find ideas for new treatments, self-help strategies and support. I’d also guess many of us have searched for medical symptoms in a general online search and come to the conclusion that we were on our deathbed rather than just having a common cold.

Not all medical information online is good information, but that doesn’t mean no information online is good. The challenge is to find the right information in the right places. The IC Network’s website (where you currently are!) is a great starting place. The IC Network has been helping patients with research-based IC related information for years. You can find a list of references at the bottom of the research-related articles on the site to take you straight to the original source of information.

If you want to delve into more information about IC or any other medical condition, you definitely want to check out this list to make sure you’re getting doing the best online medical research.

Don’t use a general search engine.

Using a general search engine is great for many things — like a new chicken recipe to make for dinner tonight. But, it’s not a great starting place for online medical research. One of the best places to start is the National Library of Medicine’s website. It offers a search feature of medically accurate sites. For example, the term “interstitial cystitis” gets over 8 million results on Google and 142,000 on Bing, but just 1,041 on the National Library of Medicine site. Basically, unbiased librarians from the National Library of Medicine are doing the research for you to find credible sources. A general search engine like Google will also list first the most popular site or those that have paid to be higher in the results. Neither of which has to do with whether the site is providing good and accurate information.(1)

If you are looking for studies about a certain medical condition, start with PubMed. As another section of the National Library of Medicine, it offers searchable abstracts of studies published in all sorts of medical journals. These are written for medical professionals, but don’t let that intimidate you. Just be prepared to take a deep-dive and look up some medical jargon along the way. With more than 4,000 results for “interstitial cystitis” on PubMed, you might want to narrow your search down with additional terms, date ranges or authors. For example, try searching “interstitial cystitis and allergies” to see studies related to whether allergies affect IC symptoms.

Check out medical societies.

Another great source for online medical research is medical societies.(1) Some of the following medical societies can be good sources of information about IC.

All of these sites have internal search engines that pull up information on IC and can be good sources for online medical research.

Try reputable general health information sites.

Reputable general health information sites are also good to check out when doing online medical research. Take into account that these kinds of sites are created to give lots of information about lots of medical conditions and diseases to lots of people. You won’t always find the most detailed information on them, but they can still have great takeaway points. They can also be great jumping off points if you are just starting online medical research on a new topic.

Know how to assess source credibility.

As you continue in your online medical research, you’re probably going to come across some websites and information outside of the sources we’ve talked about so far. They can still have good information. Knowing how to assess the site’s credibility is important. You want to pay attention to a few things.

Who is in charge of the site?

Check the “About Us” section to see who is behind the website. (If you can’t find an “About Us” or similar section, don’t trust the page’s credibility.) You want to look for sites that have medical advisory boards or doctors affiliated with them. You want to avoid sites that are run by drug companies or a company who is trying to get you to buy a product from them. At the very least, if you know their bias and what’s in it for them to present the information, then you can take it with a grain of salt.(2)

Who writes the content?

Again, this should be clearly marked as well. Many articles, like those here on the IC Network, have short biographies about the authors to help you identify who is writing the article. If the byline isn’t clearly marked, you may have to do a bit of digging.(2)

Does the information include references?

Even studies and publications in medical journals include a list of references. You want to ensure the medical information presented is backed up by research and doesn’t rely on opinions. Opinions should be clearly stated as such.(3)

What’s the date on the information?

While sometimes reading information from 10 or 20 years ago isn’t such a bad thing, medical information is constantly evolving. Make sure you know when the information was compiled to know how up-to-date and relevant it is.(2) With IC, for example, treatments today have evolved from where they were 10 years ago. Researchers and doctors are constantly discovering new things, so having updated information is best.

What is the site’s purpose?

Take note of the site’s purpose. If the site’s purpose is overtly (or sneakily) to sell you a product, then the information is less credible. Companies selling things aren’t going to include the negatives of their products or other options available. But if the site’s purpose is to educate and inform about medical conditions for patients or doctors, then it is more credible.(2) Avoid sites that offer a quick cure or other miracle-type treatment. If it sounds too good to be true, then it probably is.

Does the site have a reasonable privacy policy?

Most websites collect some non-identifying information when you visit them. But some sites ask for more information from you before giving you the information you’re seeking. If that’s the case, be sure to find and actually read the privacy policy. In general, a site designed to simply provide medical information should not be asking for contact information from you, unless you are purchasing a medical article from a journal.

For an even more in-depth look at evaluating online information, check out the Evaluating Internet Health Information tutorial from the National Library of Medicine.

Avoid the comments section.

Maybe this is a good idea for everything! Not much good happens in the comment sections on the internet, and that includes medical information as well. We all know the saying that you can’t make everyone happy. If you come across a negative comment about the author, then you may be more likely to question the information. If you’ve done your due diligence, following the steps mentioned, then you don’t need extra seeds of doubt planted.(1)

Be aware of medical study information.

This totally sounds contradictory. You do want to find information that has been confirmed by medical studies. But you also need to understand the study from which it comes. If the article you’re reading doesn’t give you any information like how many study participants there were, then go to the study yourself and check it out. For example, in the IC research community, there are lots of preliminary studies about treatments that might work for some patients. But those studies can involve very few patients (like 10 or fewer). While that’s not to say the studies are irrelevant, that is to say that you don’t want to stake all your hope in them. In the conclusion of most of these studies, researchers will usually mention this as well and say that further study is needed. The information can be interesting and promising, but remember it is work in progress.

Don’t rely on medical information from other patients.

You can find a variety of patient groups on social media. While they may have their purpose and their place, they are not a source of medical information. Utilize patient groups for support but not for medical information. Moderated forums, like the patient forum on the IC Network, is best because moderators make sure bad information is filtered out. But, if you’re doing online medical research, you want to use credible sources. And you should never make any decisions about starting or stopping treatment without talking with your medical provider.

 

References:

  1. Gunter J. The Vagina Bible. Piatkus. 2019.
  2. NIH National Institute on Aging. Online Health Information: Is it Reliable?. Oct. 31, 2018.
  3. National Library of Medicine. Evaluating Internet Health Information. MedlinePlus. March 6, 2020.