If you’re diagnosed with cancer, let’s be honest. One of the first things you’re probably going to do is get on the computer and “Google” the diagnosis. It’s a fact of 21st-century life. And it’s not an inherently bad idea either.
The Internet puts a wealth of information at your fingertips — information past generations would likely never have gotten to see. On the positive side, looking up your diagnosis online can help you to locate specialists and learn about the most cutting-edge treatments. It can help you to connect with support groups and even find a relevant clinical trial.
On the other hand, not everything you read online is true. If you’re not careful, you may end up misinformed, seeking improper treatment or unnecessarily stressed. So while it’s natural to want to find out as much as you can about your cancer diagnosis, it’s important to follow some important guidelines.
One in Three Americans Search for Health Information Online
If you seek health information online, you’re not alone. A national survey by the Pew Research Center’s Internet & American Life Project revealed 35 percent of U.S. adults have looked online to figure out a medical condition. The search prompted nearly half of them (46 percent) to believe they needed medical attention.
When at the doctor’s office, 41 percent said a medical professional confirmed their suspicion and their online diagnosis while 18 percent said the medical professional did not agree. Women tend to “Google” their health issues more so than men, as do younger people and those with college or advanced degrees.
When searching online, 77 percent of people used a search engine first (Google, etc., as opposed to directly typing in a health site, for example). Further, about 25 percent of people said they were blocked from accessing the health information they were seeking by hitting a ‘pay wall,’ such as a site requiring payment to view a journal study.
This didn’t deter most people, however, as 83 percent continued to keep looking after being blocked from the initial information.
How Accurate Are Online Symptom Checkers?
Aside from Googling a diagnosis, many people use Web-based symptom checkers to determine if their cluster of symptoms is something to worry about. You can find symptom checkers associated with medical schools, hospitals, government agencies and insurance companies.
You list or check off your symptoms and the programs churn out a diagnosis. But how accurate are they? Researchers from Harvard Medical School analyzed 23 different symptom checkers pitted against the symptoms of 45 clinical vignettes used to teach medical students.
Overall, the symptom checkers reported the correct diagnosis first in 34 percent of the cases. The correct diagnosis made the top three suggestions about half of the time and was in the top 20 in about 58 percent of cases.
The symptom checkers were correct in nearly 60 percent of the cases when determining whether a patient should seek medical care and correctly recommended an individual seek emergency care 80 percent of the time (this was a better accuracy rate than for a typical search engine, which suggested emergency medical care only 64 percent of the time).
The main drawback to the symptom checkers in this study was being overly conservative. They had a tendency to suggest people seek medical advice even when it wasn’t necessary, which promotes unnecessary care.
Googling Your Diagnosis: What NOT to Do
First and foremost, don’t believe everything your read, whether it’s from a seemingly reputable health site or an online forum. Take what you read online with a grain of salt and always get a second (and even third) opinion.
Next, avoid getting caught up in advice from forums. You can sometimes glean valuable information from online chat rooms, especially if your diagnosis is rare and information elsewhere is limited. But you could also be taking advice from someone who is far from an expert (or, worse, could have a malicious intent).
If you are in a forum seeking opinions, ask for credible research studies, experts’ names, and any other relevant information to help back up any advice you receive.
Time is of the essence after receiving a cancer diagnosis, so you don’t want to muddle your path with inaccurate information. Be wary of health information that comes from commercial websites that will benefit monetarily from you following their advice (such as buying supplements or other products).
Also be wary of information that comes from individual bloggers (especially those with no medical background) or which is not backed up by credible sources and/or research. Websites that have a lot of advertising are also not the best choices, as their message may be skewed to support their sponsors.
How to Get the Most Out of Googling Your Diagnosis
You want to be an active participant in your health care, and that’s a laudable choice. Searching the Web can be a part of that goal whether you’re looking for help with a diagnosis or want more information about a diagnosis you’ve already received. As the Harvard BMJ study explained:
“Members of the public are increasingly using the internet to research their health concerns. For example, the United Kingdom’s online patient portal for national health information, NHS Choices, reports over 15 million visits per month.
More than a third of adults in the United States regularly use the internet to self diagnose their ailments, using it both for non-urgent symptoms and for urgent symptoms such as chest pain.
While there is a wealth of online resources to learn about specific conditions, self diagnosis usually starts with search engines like Google, Bing, or Yahoo.
However, internet search engines can lead users to confusing and sometimes unsubstantiated information, and people with urgent symptoms may not be directed to seek emergent care.”
To get the most out of your online search, here are some tips to follow:
- Keep track of the health sites you’ve visited; when you find something important, write down who said it or where you saw it
- Seek advice from experts, such as physicians, psychologists or researchers
- Check websites that are affiliated with health care institutions, government agencies or academic centers
- Discuss your online findings with your health care providers; either print out the information or share the links so you can look at the information together
Perhaps most important of all, be sure to follow up your online search with a visit to your health care provider. The Pew survey found that 35 percent of online health searchers never visited a clinician to get a professional opinion.
If you’re searching online following a cancer diagnosis, you’ll want to make appointments with specialists in that field to get their expert opinions on what your course of treatment should be. Finally, if cancer information is what you’re after, here is a list of some of the most reputable sites to begin your online search.
National Institutes of Health, National Cancer Institute
American Cancer Society
Cancer.net (oncologist-approved information from the American Society of Clinical Oncology)
Cancer Research Institute
U.S. National Library of Medicine (a free archive of searchable journal studies)
Living Better with Cancer