Being an informed patient is, in many ways, tougher than ever. A tsunami of material is freely available on the Internet nowadays, from medical datasets to research papers to instructive videos. But when you’re searching for something specific for yourself or a loved one, the most relevant streams of data are often hard to find or decipher.
I am spending the next several weeks writing up some of the tips and tricks for online medical searches that I’ve picked up over the years. I also plan to include a bunch of other people’s hard-won habits for finding just the right study, clinical trial or care-giving guide.
Let me be clear, I’m not talking about playing doctor here, trying to match up symptoms to a particular disease or condition. Rather, I’m seeking to explain some of the best ways to look up the information you need, after you’ve been given a definitive diagnosis, to help you better understand your options.
By gathering these pointers in one place, I hope these blog posts will help people get up to speed faster if they suddenly find themselves needing to research a health condition or understand treatment options. Going forward, I’ll tag the posts “how-to-search-medical-info” so you can see what else has been covered and find other installments in the series.
If you have something meaningful to contribute, please use the comments section below. If this project starts gaining momentum, we’ll figure out a more efficient way to collect and rate your tips and ideas.
The first place to check if you need to learn a lot in a hurry is MedlinePlus. The site was launched just over 15 years ago by the National Library of Medicine (NLM) to help consumers find and make better use of authoritative medical information. It provides a quick overview of more than 900 medical topics, expertly curated by information specialists on a daily basis. As an added bonus, MedlinePlus is also available in Spanish.
Why am I such a fan of MedlinePlus? Because the medical librarians at the NLM have already done a lot of the heavy lifting for you.
Let’s say, as an example, you’re helping a friend with throat cancer. You start typing “throat cancer” into the MedlinePlus search box and even before you can finish typing, the entry auto-completes, giving you a sense that at least you’ve picked a meaningful key word (very important). See screenshot below.
Right at the outset, MedlinePlus gives you a definition with—and this is key—some of the more technical names (more key words) for various kinds of throat cancers. You learn that “the different parts of the throat are called the oropharynx, the hypopharynx, and the nasopharynx.” And maybe this jogs your memory that the doctor told you this was an “oropharyngeal cancer.” So now you know you’re talking about the back of the tongue going down into the throat.
What I didn’t realize, until I spent a week at the NLM last fall, is that this page is the result of some medical librarians having created a complex search algorithm that finds and ranks the material you see on the page. For example, even though I did not enter a search term about “human papilloma virus (HPV),” some of the information that the search produces very high up in the list on the right includes links to HPV and throat cancer.
It turns out that while most throat cancers are caused by alcohol or smoking, infection with HPV has also recently been linked to throat cancer. And I didn’t have to know that before typing in my search.
In this case, I have an option to refine my search by the HPV-keyword (on the lower left). And I can see in the detailed results on the right that “head and throat cancer survival may be longer if tumor is caused by HPV.”
In the next blog post, I’ll dive even deeper into what the NLM offers on its numerous websites.