The Complete Cancer Organizer. Jamie Schwachter
Reading information out of context that doesn’t really apply to your situation
• Outdated information
• Incorrect information
• False claims and misinformation
When beginning your Internet search, we recommend starting with sites that are provided as resources for patient education. The information on these sites is usually written in language that can be easily understood by the lay person, giving a basic explanation about some key concepts that help to lay a foundation for understanding your cancer diagnosis. These starting places can provide you with leads to additional resources.
As you see, websites have addresses with various endings. These endings give clues as to who may be providing the information. However, many of the endings can be registered and used by anyone, which means that not all websites match the definition of the endings they use. The exceptions are .edu (educational), .gov (government), and .mil (military), which can only be used by organizations that function as their endings imply.
Some Recommended Websites to Start Your Search
• National Cancer Institute www.cancer.gov
• American Cancer Society www.cancer.org
• American Society of Clinical Oncology (ASCO) Patient Education www.cancer.net
• Leukemia & Lymphoma Society www.LLS.org
How to Judge if a Website Is Reliable
Health On the Net Foundation (HON) is a worldwide organization based in Switzerland that developed a code of conduct (HONcode©) using the core principles of Internet reliability (see Principles for Evaluating Website Reliability). Their mission is to help standardize the reliability of medical and health information available on the Web. A website that has been certified by HON will have the symbol displayed. While the symbol indicates that the participating website agrees to abide by this ethical code of conduct, it does not rate the quality of the information provided.
Certain groups tend to provide evidence-based information and they often make good resources for information. They include government agencies, hospitals, universities, and medical journals and books.
It is a good idea to ask yourself some questions when you visit a website to help you decide how much to trust the information found there.
Who runs the website? The person or group publishing the health information should be identified somewhere on the website.
Who is paying for the website? And, what’s the purpose or mission of the website? You should find this information in the “About Us” section of the website.
What’s the original source of information on the website? If it was from a research journal or book, you should be able to locate that information on the site.
Who writes or reviews the information and who validates it? Most reputable health information sites have someone with medical or research credentials review the information before it is posted to make sure it is correct.
How up-to-date is the information? You should be able to find on the site when the information was posted or last reviewed.
What information does the website collect from you? Why? You should not provide any personal information on a website until you understand the policies under which it will be used and you are comfortable with any risk involved in sharing your information online.
Internet Red Flags
• Claims to cure incurable conditions
• Use of phrases such as “scientific breakthrough,” “ancient remedy,” “miracle cure,” and “secret ingredient”
• Claims that a product can cure a wide range of illnesses (No one product can do this.)
• Stories of people who’ve had amazing results, but no clear scientific data are presented
• Claims that a product is available only from one source, especially if you must pay in advance
• Claims of a money-back guarantee (While this guarantee may make the product seem risk-free, it’s often impossible to get your money back.)
• Websites that don’t list the company’s name, street address, phone number, and other contact information (It may only exist offshore, away from U.S. laws and regulators.)
• Companies that guarantee free or low-cost prescription drugs for a fee upfront (You are likely paying for information and applications that are available for free.)
Adapted from Federal Trade Commission consumer guidelines: www.ftc.gov
Some basic tips for using the Internet will provide you with the best and safest information:
• It is more helpful to read about your cancer after you have received a diagnosis from your doctor.
• Start with sites that are reputable and provide information using patient-friendly language.
• Ask your healthcare team for recommendations of reputable sites.
• Make note of terms or questions that arise so that you can get clarification from your healthcare team at your next visit.
• When you find an article or information on a website that you’d like to run by your healthcare team, print a copy or make note of where you found the article or piece of information.
• Always be sure to check in with your healthcare team before acting on any advice you find online. And, if it doesn’t sound right, it probably isn’t.
Principles for Evaluating Website Reliability
Authoritativeness—indicates the qualifications of the authors.
Complementarity—Information should support, not replace, the doctor-patient relationship.
Privacy—Respect the privacy and confidentiality of personal data submitted to the site by the visitor.
Attribution—Cite the source(s) of published information and dating of medical and health pages.
Justifiability—Indicates the qualifications of the authors.
Transparency—Accessible presentation, identities of editor and webmaster, accurate e-mail contact.
Financial Disclosure—Identify funding sources.
Advertising Policy—Clearly distinguish advertising from editorial content.
From Health on the Net