Consumer health questions range from the extremely serious to the slightly bizarre. Consider these:
• Will vitamin K cure varicose veins?
• Can a raw food diet cure breast cancer?
People are likely to turn to the internet rather than their local library for answers, and, while it may seem to them that every answer is on the internet—it isn’t! Neither is every answer true, accurate, factual, or evidence-based. Searching for health information is a crap shoot, but it doesn’t have to be if you search the right sites, incorporate a few search tips, and navigate the relevant websites included here. Knowing these sites and tips will not only lead to good answers for your health questions, it will also provide a background to help others with theirs.
Phony advice abounds on the internet, as do phony, faux peer-reviewed medical journals. Even the most prestigious journals, despite expert peer review, occasionally publish bogus, unsubstantiated rubbish. The same thing occurs on the internet, only far grander in scale and scope. My aim here is to enumerate a set of credible sites that serve as a go-to group of reliable resources, ready when you need them. As clinicians often say, these are an “armamentarium” of trusted tools!
First, know the HONcode icon (hon.ch), created by the Switzerland-based Health on the Net Foundation, serving the entire world. When visible on a site’s main page, the HONcode of fers users a reliable measure of credibility when web searching health information websites.
According to the Literacy Project Foundation (literacyprojectfoundation.org), 45 million Americans are functionally il literate, meaning they can’t read above a 5th grade level, and 50% are unable to read a book above an 8th grade level. These are stunning stats that don’t favor informed health decisions or empowered web searching. Health literacy is the ability to understand and communicate health information—the ability to ask for, receive, and process the information needed to make suitable healthcare decisions. There’s a terrific patient education program, Ask Me 3 (npsf.org/?page=askme3), which highlights the importance of understanding one’s health status and care decisions:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
Sadly, folks with literacy deficits are generally also health-illiterate, which further emphasizes the importance of clear 5th–8th grade readability scores for all websites providing consumer and patient health information.
My purpose here is not to identify hundreds of sites; rather, it’s to identify full-bodied websites that are reliable, credible, and readable on the 5th–8th grade readability continuum. These resources can educate, prepare, and assist people in gaining the information and understanding they need to make good health decisions.
If you’re considering writing website content for your own users, these two websites provide guidance, tips, and direction for creating appropriately accessible health information content:
Health Literacy Online (health.gov/healthliteracyonline/about)
Plain Language.gov (www.plainlanguage.gov/populartopics/health_literacy/index.cfm)
The AHRQ (Agency for Healthcare Research and Quality; AHRQ.gov) Patient Involvement website (ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/index.html) provides a wide array of patient-focused, helpful, how-to information, including video clips showing patients asking questions of their clinicians (ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/videos/index.html). Particularly useful is the list of 10 questions you should know the answers to (ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/10questions.html). The site guides patients and families on what to ask clinicians, how to ask, and clarifies what their rights are. MedlinePlus also has an easy-to-navigate section on patients’ rights (medlineplus.gov/patientrights.html).
Speaking of patients’ rights, below are a few additional websites to use as you sleuth for the truth:
Federal Trade Commission: Buying Health Products and Services Online (consumer.ftc.gov/articles/0023-buying-health-products-and-services-online)
Stop Medicare Fraud. Prevent fraud—if you experience it, suspect it, report it (stopmedicarefraud.gov/preventfraud).
Suspect it’s bogus? Check the possibly bogus treatment or drug on Quackwatch (quackwatch.org). Stephen Barrett, M.D.’s guide to quackery, health fraud, and intelligent decisions is actually an international network monitoring health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on exposing quackery-related information that¹s difficult to find elsewhere. It generally informs readers via professional, evidence-based literature and/or other fact-based resources that lay bare the therapeutic improbability. “How the ‘Urine Toxic Metals’ Test Is Used to Mislead Patients” provides a good example of Barrett’s debunking activities: quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html. Barrett also maintains additional sites for autism, chiropractic, and dentistry, among others.
What You Need to Know Before Searching
Facts matter, evidence matters, and just because Dr. Oz says it’s so, doesn’t mean it’s evidence-based. The British Medical Journal did the research on Dr. Oz, and he flunked! Researcher Christina Korownyk of the University of Alberta found Dr. Oz’s recommendations weren’t substantiated by current medical research. Furthermore, some were just plain wrong! The article goes on to say, “Recommendations made on medical talk shows often lack adequate information on specific benefits or the magnitude of the effects of these benefits,” and notes, “The public should be skeptical about recommendations made on medical talk shows” (bmj.com/content/349/bmj.g7346; soundcloud.com/bmjpodcasts/can-you-trust-the-advice-of-tv-doctors).
Get savvy on how to search before you set out to research an ailment, diagnosis, or treatment or to simply understand a health condition, device, or drug. Take a few minutes to prep by taking a tutorial—or two! Start with a MedlinePlus tutorial (medlineplus.gov/webeval/webeval.html) on how to evaluate health information webpages (medlineplus.gov/evaluatinghealthinformation.html).
Best OR Bogus?
How can you tell what’s credible and what’s incredible? You’re just as likely to find bogus sites as you are terrific sites. Any site worth its HTML has an About Us tab or section. If the website you’re viewing doesn’t have it, move on! Be aware, however, that bogus sites may have an About Us that lays out a point of view, philosophy, or a rant against current medical practices. Here’s my rule of thumb: If it sounds nuts—it is nuts! Surf past these! Vet any site with these questions—users can then pass by a site or dive in with confidence.
1. Who sponsors/hosts the website? Is it easy to find? Follow the money! A robust website costs money, so check the fine print at the bottom of the homepage. Look for a copyright symbol. Is the sponsor a drug company or a for-profit? Use the web suffixes to identify website sponsors:
- .gov – Finds U.S. government agencies
- .edu – Identifies educational institutions, such as schools, colleges, or universities
- .org – Nonprofit organizations; professional, scientific, medical, or advocacy groups; some may be bogus, as well
- .com – Identifies commercial websites (business, pharma companies, sometimes hospitals)
2. Can you reach the sponsor? Responsible websites have contact information. An email address, toll-free phone number, and/or mailing address will likely appear on each page, or in the About Us or Contact Us page. If there’s no physical address that you can check out on Google Maps’ street view, it’s a clue to click elsewhere.
3. Who wrote the content and who’s reviewed it? Contributors are not always identified. Federal or state govern ment sites don’t usually list individual authors but rather groups or departments. Bogus sites or celebrity name sites are likely ghostwritten. Sniff out the reliability by checking for the HONcode and other accrediting organizations. If the site is selling something, look for a clinical study citation from the medical literature or documented evidence for the alleged “therapeutic value,” then read the cited article. If the abstract results don’t state clearly there’s a thera peutic effect, or if the effect was slight or only in a small patient group (10 to 100 patients), put your credit card back in your wallet!
4. Testimonials —Watch out! Compelling stories abound on the web, but are they true? Who knows? But remember, each body is different; one person’s experience is not generalizable to every person. Cancer, the dreaded diagnosis we all fear, covers 200 diseases. There is no single cure! Any website that promotes this lie should be avoided! So it goes with many other highly complex medical conditions.
Conundrum websites look legit, might be run by a pseudo-clinician or an athlete, and they sell the spokesperson’s panacea. These sites require extreme vetting. A good example is the Dr. Axe Food Is Medicine site (draxe.com). He’s a doctor of natural medicine, selling his versions of L-Cysteine, citing the research in a journal article about an Alzheimer’s animal cellular study but with no clinical studies! At the bottom of his homepage is a hard-to-read, small-print disclaimer required by the FDA:
These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease. If you are pregnant, nursing, taking medication, or have a medical condition, consult your physician before using this product.
But there is no HONcode symbol, no other similar symbol, only the icons for Facebook, Pintrest, YouTube, and Google+. Be careful of these sorts of websites. There is a deal-breaking difference between a website developed by a single person absorbed in a topic or product that earns money and a website resulting from strong scientific evidence.
Heinously harmful sites such as The Health Wyze Report & Fidelity Ministry (healthwyze.org) claim HONcode is a travesty, and implicit in every sentence is the conspiracy theory that the people setting up these deceitful sites are the ones being victimized by the medical community.
It’s worth heartily reinforcing that users and patients must remain aware that nothing replaces an in-depth examination by a clinician (nia.nih.gov/health/publication/talking-your-doctor/opening-thoughts-why-does-it-matter).
5. If it sounds like an incredible cure—it’s likely IN-credible—indeed, it would be a miracle for it to be effective! Leave quickly; healthy skepticism is your best defense! Remember that old Wendy’s ad question, “Where’s the beef?” Well, the best tagline for these websites is, “Where’s the evidence?”
6. What’s the date on the information? Current infor mation, evidence, and citations to medical literature are imperative. Review websites with current information only. Historical background is dandy as context, but check the literature; don’t make decisions without current information. Look for a date. Many websites are ancient and users can’t tell.
8. Are your privacy rights, as a consumer, protected when making an online purchase? If the site doesn’t ex pressly mention a “secure server” for shopping or payment, beware! To avoid worry, many online shoppers use PayPal to eliminate credit card security problems; if the site doesn’t accept PayPal, think carefully about whether it’s worth the risk.