Finding Accurate Information in a World with Too Much
We used to live in a world where information was hard to find. Now our world has way too much. So let’s reflect a little on how that impacts patients. Let’s dig in.
A World Where Information was Hard to Find
I remember being a high school student researching my science fair project at a local university. I can still smell the oddly satisfying and comforting scent of being surrounded by books. The absolute silence of a medical library for a kid who grew up in a house with 7 kids was also strangely blissful. However, despite finding my groove in that world surrounded by 10-foot book stacks, back then, research was hard.
How did it work? You had to go to a book called “Index Medicus”, look up your subject and then search through hundreds of book stacks and then locate a book or journal in hundreds of thousands of volumes. A single subject that would recall a few hits would take 30-60 minutes to research.
The picture above is the one I took at a college visit with my son. It’s from the world of my 1980s college experience and sitting over the entrance to a building that was built a century ago. Hence, in many ways, the mission of universities back then was to teach people where and how they could find information.
A World of Information Overload
The world by the 90s had changed from information scarcity to the nascent beginnings of what we see today. For example, I also remember sitting in the front room of our rental house here in Boulder, just out of residency and starting a private practice. There was no Internet, but you could buy a floppy disk and pay a monthly fee to use a dial-up modem to search the US National Library of Medicine. You had a blue screen in which you typed your subject and then the computer with a modified old CRT television monitor would dial up the government’s computer. You heard screeching and strange computer sounds as the two computers “talked” to each other over your phone line and negotiated a download of the titles that matched. While it was slow compared to what we do today, it was also the most exhilarating new toy I had in the early 1990s. It meant that I could do research on medical topics in hours that would have taken me weeks in a medical library.
Now, we can get these US National Library of Medicine hits with a quick Google search. Unlike in the 1990s, we can also download the actual articles in seconds. In fact, if you know medical jargon, by typing that in a Google search box you can turn your browser into a medically certified research tool and watch Netflix at the same time!
The Half of Knowledge Is to Know “How to Interpret the Knowledge”
I purposely rewrote the statement above the doorway, because we no longer have a problem finding information, we have a problem interpreting information. One of the biggest challenges I see now for patients is the two-edged sword of social media. Let’s dig in.
On the one hand, social media can be a lifeline for patients with rare conditions or when the traditional medical care system is failing to help them recover. On the other hand, one of the biggest problems I see now is patients being overloaded with way too much information. Without a filter of what applies or what might be disinformation on a topic, patients are frequently wasting time chasing avenues of care that will likely never get them any closer to feeling better.
So what’s the solution for patients? Should they quit social media? No, I still think that social media is a net positive. However, I do think that patients need to know how to develop a big healthy filter for information. Here are my five rules for interpreting medical knowledge in a world that has too much information:
- Consider the source. What I mean here, is to be wary of who’s relaying the information and what they have to gain. For example, I have personally seen patients and others in patient Facebook groups who are paid salespeople for clinics or manufacturers. This is obviously a problem. The same goes for clinic websites. Pharma also has become expert at making drugs and procedures seem way safer than they really are. While you would think that university websites are safe, they often tow the traditional medicine line that rarely helps people with certain pain conditions find answers.
- Information that sounds too good to be true is usually too good to be true. If you see a procedure or a new drug or injectable that claims to work in everyone, then that’s not real. Real medical care always has a success and failure rate.
- Be a skeptic. Ask the tough questions. For example, why does this work? How does this work? What research has been done or is being done? How often does it work? How often does it fail? How much experience does this provider have? Are patient results being tracked? What’s the worst and best thing that could happen?
- It usually doesn’t apply to your specific medical condition. Meaning, there are lots of things physicians look at to determine if someone’s a candidate for a procedure or drug. Just because someone sounds like they have similar symptoms to you doesn’t mean that you’re also a candidate for what they had done or the drug that helped them.
- Use PubMed. That US National Library of Medicine database I accessed back in the early 90s is now called PubMed and lives here: https://pubmed.ncbi.nlm.nih.gov/. You can type in medical terms and all of the research on those terms will come up. You may have to look up the medical jargon, but what’s in PubMed has at least gone through peer review, so while not all of it will turn out to be accurate (that’s how science works), PubMed will at least act the same way those rails do in kid’s bowling, it will make sure you don’t get a “gutter ball” of misinformation from a clinic website.
The upshot? I love that saying above the doorway, but it now needs an edit. So do yourself a favor, become that patient that asks the tough questions rather than the one who follows all sorts of counterproductive rabbit holes. The information age we’re living in is a huge two-edged sword. Learn to use it to your advantage to help get you better faster!