Would you ask a fellow shopper at the grocery store why you have pain when you breathe? Would you ask your car mechanic what kind of surgery you should have to fix a heart condition? Of course not! Although many of us seek advice from family, friends, colleagues and sometimes even strangers, it’s not necessarily a great idea for medical advice. Many of us search online for medical information, but how can you find trustworthy sources for medical information online?
Finding reputable websites for health-related information can be difficult. And we are not just searching websites, we are increasingly looking to social media sites for information as well. But and this is important, there is no governing body making sure that information on websites and social media sites is accurate. You don’t need a medical or scientific degree to create a website, post on Facebook, or post a video on YouTube. This begs the question: what are trustworthy sources for medical information on the internet?
Are there trustworthy sources for medical information online?
As we all know, the internet is convenient, always available, and cost-effective. And it’s changed the way we interact with our doctors. People search online for information about medical conditions and treatments more frequently than they communicate with their doctors about their health care. According to the 2018 MARS Consumer Health study, 80% of all US adults look on the internet for information related to health and wellness.
Online research can help identify treatment options.
Doctors have a hard job. There are thousands and thousands of medications for doctors to keep track of. And, there are hundreds of clinical trials and new treatments for doctors to learn about. Therefore, when patients research treatment options, they may find possible solutions that their doctors are unaware of. But, there’s a lot of misinformation available on the internet, so proceed with caution.
Online support groups can be a lifeline.
Online support groups connect patients and family caregivers who are dealing with similar health conditions. Not only can these groups provide much needed emotional support, users exchange medical and lifestyle information. But, it’s important to realize that participants are usually not medical professionals.
The fake medical news epidemic.
There is a lot of discussion these days about fake news, with frequent accusations against mainstream, trustworthy news sources like NBC, CNN and The New York Times. These allegations dangerously erode the public’s trust in mainstream news.
However, that is not the kind of fake news I am writing about here. Unfortunately, some websites, posts and videos are intentionally filled with misinformation in order to deceive the public and/or sell bogus cures. Watchdog groups found hundreds of websites filled with fake medical news, with countless more flying under the radar. This is troubling, to say the least. The misinformation in these sites ranges from ridiculous to subtle misreporting and overhyping of mainstream news stories. These sites often use false information to drive the sale of expensive, unproven treatments and/or to increase ad revenue.
If you’re confident in your ability to detect fake medical information, don’t be so sure. Sometimes the creators falsely cite reputable hospitals or government agencies, with fabricated quotes, to convince you that their information is reliable. And once the information is posted, it is often be widely shared on social media.
One example of potentially dangerous fake news.
The website YourNewsWire posted the article “CDC Doctor: ‘Disastrous’ Flu Shot Is Causing Deadly Flu Outbreak.” In the article, an anonymous doctor at the Centers for Disease Control and Prevention warned that nearly everyone dying of the flu had one thing in common: They had gotten flu shots. “This scares the crap out of me,” says the doctor in the article. The story also cited Big Pharma as a co-conspirator for failing to tell the public about toxic chemicals in the vaccine. And it was published in the middle of a terrible flu season.
But it was all fake – the entire story, including the quotes, was made up. But the piece went viral. Not only did it appear on alternative-health and conspiracy-theory websites, it was widely shared on Facebook, with 500,000 engagements in one month. There were thousands of online comments, including some claiming incidents of paralysis or death from flu shots. Although several fact-checking websites reported issues about the article, it didn’t slow the momentum.
How big a problem is this?
Very big! In 2019, NewsGuard evaluated health claims in websites and found that 11% provided misinformation about health. And these are popular sites, accounting for over 49 million engagements (shares, likes, comments, etc.) on social media in a 90 day period, which is more than major news websites such as NPR, Business Insider, or Forbes.
NewsGuard, co-founded in 2018, rates websites based on nine basic journalistic criteria. Each site receives a green rating (generally reliable) or a red rating (generally not reliable).
What’s the government doing about this?
This is a very tough nut to crack. But the FDA (Food and Drug Administration) and the FTC (Federal Trade Commission) try to stop companies illegally selling products with fraudulent claims, including purported cancer treatments and weight-loss supplements. But the agencies cannot keep up with the volume of companies making false claims. And some companies get around regulatory actions by changing their company names and reintroducing their products under new names on new websites.
Good news! The FDA launched a website to track fraudulent healthcare claims. Visit the site to learn about FDA warnings for a wide variety of healthcare claims.
How can you tell if it’s fake news?
First and foremost, remember what your parents always told you – if something seems too good to be true, it probably is. Fortunately, there are a few websites you can use to evaluate potentially fraudulent claims, including Quackwatch, Snopes, and HealthNewsReview (which is currently struggling to stay online due to funding issues). You can also install the plug-in from NewsGuard.
Here is a list of websites to avoid – the 10 most visited sites containing health misinformation from News Guard:
Can you trust medical information in YouTube videos?
Health videos are popular on YouTube. But, can you trust the information in YouTube health videos? Not without scrutiny of who made the video. Did a hospital produce the video, or was it a device manufacturer or pharmaceutical company looking to make a sale? Did a doctor make a video or is it by a layperson with no medical background? Look before you leap.
YouTube health videos are often inaccurate.
There have been several studies looking at the trustworthiness of YouTube health videos. Not surprisingly, researchers found that many videos were of poor quality, were biased, and/or contained commercial content. And videos with misinformation can be dangerous. One example – users highly rated videos that portrayed immunizations in a negative way, but 45% of these videos contained misinformation. These videos encourage parents to skip vaccines, a danger for all of us.
A look at COVID-19 videos.
During a global pandemic, accurate information is essential. However, many of these videos contain false information. Researchers evaluated 69 of the most viewed YouTube videos about COVID-19. (They only examined videos that were in English, less than 60 minutes, and contained audio and visual content.) The researchers found that almost 28% of the videos contained misleading information. Moreover, there were over 62 million views worldwide of these inaccurate videos. The false information provided included conspiracy theories about the pandemic, the (false) belief that pharmaceutical companies had a cure but were refusing to sell it, as well as racist or other discriminatory remarks related to Covid-19.
A study of prostate cancer videos.
A recent study evaluated prostate cancer information in YouTube videos. (Interesting note: there are more than 600,000 videos about prostate cancer with an accumulated 1 billion views.) Researchers found that 77% of the videos contained poor quality information and/or biased content, either within the video itself or in the comments section. Moreover, a greater number of views and thumbs up did not correlate with trustworthiness. Just because millions have watched a video, it doesn’t mean it contains factual information.
Can you trust medical information on Facebook?
There are many credible sources, including US government agencies and well-respected hospitals, posting reliable medical information on Facebook. However, Facebook also contains many misleading or blatantly wrong posts, many of which users widely share. One analysis of Facebook posts related to the Zika virus outbreak found that 80% of the posts contained credible information from reliable sources. What’s concerning is that the 20% of posts that contained inaccurate or misleading information generated the most interest (views, likes and shares).
Moreover, an August 2020 analysis by activist non-profit group AVAAZ found disturbing results: Global health misinformation generated an estimated 3.8 billion views spanning at least 5 countries (including the US) on Facebook in the last year.
What is Facebook doing about inaccurate COVID-19 posts?
Facebook is well aware that false or misleading information is regularly posted on Facebook. In April, 2020, they instituted a program to combat posts they identify as containing inaccurate COVID-19 information. When a user interacts with a flagged post, Facebook posts a generic message in a user’s News Feed that says “Help friends and family avoid false information about COVID-19” and directs them to a World Health Organization COVID-19 page.
However, Facebook is doing a terrible job policing their site for false health information. The AVAAZ analysis found that only 16% of all health misinformation they found came with a warning label from Facebook. Although Facebook claims their content is fact-checked, the other 84% of articles and posts AVAAZ sampled contained no warnings.
Where can you find trustworthy medical information?
Fortunately, there are many sites that provide reliable information. In general, you can trust sites run by the US government and leading hospitals. You can find information on diseases and conditions, tests and procedures on sites run by Mayo Clinic, Johns Hopkins Medicine, and Merck Manual, and on the government’s MedLine Plus. For information on medications, visit the US government’s sites DailyMed and Drug Information Portal.
Want some assurance that you are looking at a reputable website? Use NewsGuard’s plugin which provides color-coded ratings as you browse the news.
What do doctors think about patients conducting online research?
As you might expect, doctors have mixed emotions about patients searching online for medical information. Merck Manual surveyed 240 family doctors to learn their opinions on the impact of patients’ online research:
- Many doctors think internet information has caused an increase in patient interactions:
- 82% of family doctors said patients contact their offices with medical questions more frequently.
- 60% said that it has increased the number of in-person visits.
- On the other hand, 29% state that patients make fewer appointments with doctors because they made healthcare decisions based on what they read online.
- 97% reported that patients come to appointments with misinformation based on something they read online.
- 80% said patients are more likely to question doctors’ diagnoses and/or recommendations due to information read online.
One doctor pointed out that patients who research symptoms online tend to gravitate towards the scariest diagnostic option. Consequently, many patients are anxious at appointments, fearing the worst, and sometimes doubting their doctors’ opinions.
You’ve found medical information online, now what?
I encourage all patients and family caregivers to research their condition as well as possible treatment options. But I urge you to resist insisting that your doctor give you a specific test or treatment. What worked for Becky from Miami might not be appropriate for you. Yes, you might find treatment options, including clinical trials, that your doctor has never heard of. And these new treatments might be just the thing you need to get better. But the best approach is to have a conversation with your doctor regarding your findings.
If you are not satisfied with your doctor’s reaction to the information you discover, it might be time for a second opinion. And if you’re the type of person who always loves to do his/her own research, and your doctor is one who never wants to listen, it’s probably time for a new doctor (for more information, read my post: Should You Switch Doctors?).
Being an engaged member of your medical team can help you get the best care and outcome possible. Read my blog posts to learn more:
- Understanding Medical Information Is Harder Than Most Realize.
- 10 Tips for a Better Medical Appointment.
- Why Take Detailed Notes at Doctor Appointments?
- Should You Record Conversations with Your Doctors During Your Medical Appointments?
- How Can You Get the Best Healthcare? Actively Participate!
- Can You Trust Advice from Other Patients?
- 10 Tips to Communicate Better with Doctors
NOTE: I updated this pot on 8-19-20.