This is a story about how a simple internet search left an experienced genetic counselor baffled; questioning what info her patients are actually getting online.

A few weeks ago I had a patient who reached out to get some more information after she received news that her pregnancy may be at an increased risk for a genetic condition. She had just had her routine 20 week anatomy scan ultrasound and was told that her baby has an intracardiac echogenic focus. 

I took a big sigh of relief, knowing that this is a very common finding which most often is not associated with any problems. However, it had been a while since I researched this specific finding, and I wanted to brush up on whether there were any updates in the latest literature. I was also curious about what would come up if I googled the term "intracardiac echogenic focus", knowing that the patient reaching out to me has most likely already turned to the internet after receiving the news from her doctor. 

An old article from the 1980s was the very first entry that popped up at the top of the page. This particular article had very dated information; stating the risk to be much higher than what more up to date studies have indicated. I was shocked, and alarmed that this is the information that came to the top of the search page! I scrolled on to read more and more entries where information varied from "your risk is double your age related risk" to "this finding means nothing". After spending 30 minutes scouring the internet at popular sites and info from medical centers, even I was left feeling confused about all the conflicting information. Is echogenic focus a big nothing or a potentially high risk finding?! I quickly returned back to my more clinically based search of peer-reviewed published articles to make sure my facts were straight. However, I realized that most people will not be delving into peer reviewed journal articles to get more clarification or information after doctor visits. Most people will turn to Dr. Google and rely on the information they are getting from seemingly trustworthy sites.

I am not opposed to using the internet to get further clarification of medical information; and personally do find it very valuable to accompany the information my doctor discusses with me in tandem with information I obtain online. I also don't discourage my patients from searching the internet- because I know that they ultimately will since the reality is that it is helpful to hear the information in multiple ways. However, I always caution that internet stories tend to focus on the 2 extremes- the really scary severe situations or the really great outcomes. But often the average or middle of the road outcomes or experiences are not written about.

So where does that leave the non medical person who wants to turn to the internet for answers? Here are some of the considerations to keep in mind:

1. Feel free to search, but understand that there will be varying information that you will need to parse through.

2. The internet does not know your specific situation, results, or medical history- so the information you get is very general and not tailored to you or your needs.

3. You can spend hours of your time trying to ultimately get an answer that may not be the right answer for your specific situation. Context is key.

Fast forward to my actual session with the patient. She was naturally anxious about this information, but I found it interesting that even the information she was given about risks from her provider was different than what I imagine most of my genetic counseling colleagues would quote.

There's the information we receive, and then there's the perceptions of that information. And our perceptions are a culmination of all of our life experiences and data points; things we've read and conversations we've had that ultimately sway and form our perception. While the internet can give us information, it's a human that can really help with putting all that information in context of what matters the most for you.

The internet can be our backup fact checker, info seeker, and help with understanding certain medical terms and procedures. What it can't do is give you answers to questions that are very personal to you or parse out fact from anecdote. At the end of the day, even each provider comes with knowledge based on their training, experience, and own research and it is not unusual to get varying information from multiple providers. But the difference is that when you are speaking directly with a healthcare provider, you have the opportunity to ask your questions and get clarification that you otherwise would have to conclude on your own if you solely sought out info online. For example, I was able to explain to my patient where I got my risk estimates from and why they may have differed from what her provider gave her. Furthermore, she was able to ask me follow up questions about why there were differing risks and come to a conclusion and decision about the next steps that she felt confident about.

So, if you find yourself with facts spinning in your head from your internet searches, with no real conclusions- do yourself a favor; save time and instead shift gears to seek out the right healthcare provider to answer your questions. And if it happens to be anything genetics that is keeping you up at night, you can always find answers or guidance to the next steps at FiND Genetics. A smart person once told me, "I get it now. I'm not paying you for just the time you spend with me, I'm paying you for the 20 years of experience and training that allows you to give me this information in 15-30 minutes". - www.findgenetics.com