by: Paul Clement
It’s an exciting time for people with inhibitors. In addition to bypassing agents, new products may prevent or control bleeds more effectively than previous products, while reducing the burden of treatment. But where can you find accurate information about these products?
Most commonly, people turn to the internet for health information. The problem? Much of this information is false or biased. And surveys have found that most internet users can’t detect bias and don’t know how to critically evaluate the health info they find online. How do you know what’s reliable? Here are some questions to ask before trusting what you read on a website.
Who sponsors or funds the website?
Knowing who funds the website may indicate if the website has a bias. For example, while a pharmaceutical company will provide product information on its website, it also wants to influence you to buy its products—such as inhibitor therapies. Although the info on pharmaceutical websites is usually correct because the companies must follow FDA regulations, it can also be biased. Sites may contain “errors of omission”—when data is left out that might reflect badly on the product. Pharmaceutical websites may not provide all the facts you need to make an informed decision.
A website address, or URL, can help identify the funding or hosting. For example, in the URL www.kelleycom.com, the website name, or domain, is kelleycom. That’s followed by the domain extension .com. The domain extension tells you what kind of organization is funding the website. Here are some domain extensions:
.gov identifies a US government agency, such as the Centers for Disease Control and Prevention (cdc.gov) or National Institutes of Health (nih.gov).
.edu identifies an educational institution, like a school, college, or university; this can include your hemophilia treatment center (HTC) if it’s also a teaching hospital.
.org usually identifies nonprofits: professional groups, and scientific, medical, or research societies; and advocacy groups like National Hemophilia Foundation (hemophilia.org) or Hemophilia Federation of America (hemophiliafed.org). Many HTCs use .org.
.com is the most common domain extension, identifying commercial websites such as businesses, pharmaceutical
companies, and sometimes hospitals.
.health identifies healthcare professionals, pharmaceutical companies, medical associations, hospitals and health systems, health products and services, public health organizations, and health blogs and publications. Organizations wishing to operate a .health website can use this extension only after being validated as a qualified member of the health industry.
Different domain extensions are associated with various levels of trustworthiness. Generally, .gov sites and .edu sites have the highest trustworthiness (about 70%), followed by .org and .com.1,2
A company can set up almost any website name—it doesn’t have to be the company name—or may use another company to host its site, making it harder to learn who actually funds or sponsors a website. Websites that display a company’s name and products are branded websites. Their intent and biases are easy to determine. Websites that don’t mention any company name or product are unbranded. On unbranded websites, it’s harder for visitors to determine whether the site has a bias.3
Why would a company run a website without its name? For pharmaceutical companies, direct-to-consumer marketing of drugs is heavily regulated and subject to an FDA policy called “fair balance.” Fair balance requires pharma advertisers to present the drug’s negatives alongside the positives, including side effects and other conditions that make taking that drug risky. An unbranded website is not subject to the fair balance rule and is lightly regulated, allowing the company to quickly get a website running, increase “disease awareness,” and offer consumers more educational info about a medication—but not mention side effects. And this may mean a greater risk of misleading consumers. Make no mistake: pharma is funding these websites to gather general patient information or to make money by converting patients to their product. Also be wary of unbranded sites that require a “registration” process to access—websites should not ask for personal info.
For example, one pharmaceutical company runs a lightly branded inhibitor website that heavily pushes the results of the SIPPET study, suggesting that patients use a factor VIII product with von Willebrand factor (VWF). No product names are mentioned on the site, and the company name is only in small text at the bottom of a page. But it turns out that this company is also the only company selling a plasma-derived factor VIII-VWF product in the US—and this product is being promoted by the website. So, although the website provides good info on inhibitors, it also tries to convince consumers to switch to a VIII-VWF product (the company’s own), while at the same time avoiding FDA fair balance rules.
Who reviewed the info before the website’s owner posted it?
Health-related websites should provide the credentials of people who prepared or reviewed the material. Here are some questions to ask yourself: Do you recognize the author? What knowledge or skills does the author have in the subject? What else has the author written? Does the author acknowledge other viewpoints and theories? Does the site have an editorial board? Is the info reviewed by editors or experts before being posted? Does the author clearly state what’s fact or opinion? Are opinions or advice set apart from info that is “evidence based” (based on research results)? Testimonials from people who have tried a particular product or service are not evidence based and usually can’t be confirmed.
How does the website document its supporting evidence?
Websites should identify the medical and scientific evidence that supports the material presented. Medical facts and figures should cite references, such as articles published in medical journals. Be skeptical. You want current, unbiased information based on research. An article that cites no evidence and includes no references is a red flag. Things that sound too good to be true often are. Always cross-check multiple sources of info from different websites. Never rely solely on one website.
How current is the info on the website?
Medical research and knowledge are constantly progressing, sometimes making old material obsolete. How do you know if the material you’re reading on a website is up-to-date? Articles and web pages should be dated. Experts should review and update articles regularly, and then label the material with the most recent review date. Even if the information has not changed in a long time, the site owner should indicate that it’s periodically reviewed to ensure it’s still valid.
Can you communicate with the website’s owner?
Can you easily find contact info on the web page? Does the website provide names, emails, and a physical address? Or is the only way to contact the owner through a webform? More red flags: anonymous articles, and lack of contact info. Websites should always offer a way for users to contact the owner with problems, feedback, and questions.
What about social media?
According to a PwC Health Research Institute survey, more than one-third of US consumers use YouTube, Facebook, or Twitter to find medical information. And 90% of respondents aged 18 to 24 said they would trust medical info shared on their social media networks. Also, 80% said they would share their own personal medical info online (more than twice the percentage of 45- to 65-year-old participants).4
Social media is great for support, but as a source of reliable health information, it’s inadequate. Take anything you learn on a social media site with a grain of salt, and verify by visiting more reliable websites.
Be a savvy health info consumer!
Just knowing that some websites are biased and others are not can help you search for health information. Start with searches on .gov and .edu sites. When searching on .com sites, ask yourself why the sponsor is providing the website.
Learn how to use the US National Library of Medicine, National Institutes of Health database PubMed (ncbi.nlm.nih.gov/pubmed). PubMed contains more than 28 million citations for peer-reviewed biomedical literature from Medline, life science journals, and online books. Many of these citations are abstracts (short descriptions of an article); others are full text. Most PubMed citations are from medical journals, and the jargon makes difficult reading at first. But the reading gets easier over time because you’ll see the same terms over and over, and eventually, some will stick with you. Several websites, including
Medical Library Association’s What Did My Doctor Say? Page (mlanet.org/p/cm/ld/fid=580), can help you decipher “medspeak.”
In addition, several organizations rate the reliability and credibility of health-related websites for consumers. The best known is Health on the Net Foundation (HON). HON issues certificates to medical and health websites that agree to abide by the HON Code of Conduct. The HONcode symbol indicates that a site follows HON standards, so readers know the source and purpose of the medical info. But remember: HON does not verify the truth of the info on websites. More than 8,000 websites display the HONcode. The HON site has a search engine, a toolbar, and search apps.5
The bottom line: Not everything you read on the internet is true! Visit respected sites, and always verify information on multiple sites. Use dedicated health search engines like HON’s. Be skeptical of what you read online. Be aware of bias. And if you need clarification on a topic dealing with bleeding disorders, contact your HTC hematologist.
©LA Kelley Communications, Inc. Reprinted with permission.
Publication: PEN 2.19
Column: Inhibitor Insights, Sponsored by Novo Nordisk Inc.
- Analysis of 10th HON Survey of Health and Medical Internet Users, www.hon.ch/Global/pdf/2010_Internet_use_Analysis.pdf.
- Although government websites have been associated with high trustworthiness, recently they have been affected by political pressure. Information on certain topics, including condom use and effectiveness, birth control, abortion, and climate change, has been watered down or removed from government websites, making the sites less reliable.
- If a company name is mentioned inconspicuously, as in small text at the bottom of the homepage, the website is called lightly branded.
- “Social Media ‘Likes’ Healthcare: From Marketing to Social Business,” April 2012, www.pwc.com.
- Download HON apps at www.hon.ch.