Cancer Information on the Internet

For many people, the Internet has become the first place to go when looking for information. It gives you instant access to almost any topic you can think of. There is a lot of cancer information on the Internet. People facing cancer often use this information to make decisions about their illness and treatment.

On many Web sites you can find basic facts about certain types of cancer, locate the most current clinical trials, and find support in dealing with cancer. You can also get information on research articles, doctors and hospitals, cancer treatment guidelines, drug information, and complementary and alternative therapies. Always remember, not all information is good information. And bad information can hurt you when it comes to cancer.

Here we will offer some basic information about the Internet, along with ideas on what to look for and what to avoid as you look for the facts you need.

User beware

Cancer information on the Internet comes from many different sources – expert health organizations, government agencies, universities, merchants, interest groups, the general public, and scam artists. Many of these sources are people or groups that really want to help others learn more. But because anyone can post information on the Internet, some people may be passing along information that is wrong. Some will even try to deceive you.

Scam artists and other dishonest people use the Internet for 2 main reasons: low cost and relative anonymity (no one knows who they are). Selling a product (bogus or not) over the Internet costs much less money than opening and running an actual store. What’s more, you can get your message or product out to people all over the world. All it takes is some computer programming experience and a computer to host the Web site.

The impersonal nature of the Web makes it easier to mislead people. For example, if you saw a sign in front of a small, run-down store that claimed it was the largest supplier of medical devices in the United States, you’d probably be suspicious right away. But if you saw a professional-looking site on the Internet making the same claim, you might have a harder time deciding whether it was real or not. Both of these might be run by the same person. There may be no way for you to know if a professional-looking site is run by a lawful organization or by a few people who are just out to make money.

This is not to say that you shouldn’t trust anything on the Internet – just that you have to choose your sources carefully. Even on trusted, highly regarded Web sites, it’s important to note that the health information is just general information that may not apply to you at all. Always remember that the information found on the Internet should not take the place of medical advice. If you have a health-related problem, please talk to a doctor. There is no other way to get the same experience and care as sitting down with a doctor who can look at your health history, your unique medical situation, and talk with you about how you’ve been feeling.

Searches give you commercial results along with those you’ve asked for

Keep in mind that search engines return “sponsored” findings with their search results. Often, these links are at the top of the result list. They may be in a box, in a different color, above a line, or below a header, but you should be able to tell these links from the results of your search. The sponsored results are actually ads for other Web sites. Sometimes you will find the links helpful, but many of the sponsors are trying to sell a product to make money. Seller information can be helpful for many products, but it’s not likely the kind of information you want to use in choosing your cancer treatment.

How can I be sure that what I read on the Web is true?

The list of questions below is adapted from a list developed by the National Cancer Institute (NCI). Ask these questions when trying to decide if you can trust a source of cancer information. The answers to these questions should be easy to find on the Web site itself.

Who runs this Web site? Who pays for it?

Is the site run or paid for by an individual or by an organization? What type of organization – business, government agency, or non-profit organization? Any honest health-related site should make it easy for you to find out who is responsible for the information on it. Often this can be found by clicking on “About Us,” which can usually be found at the top or bottom of the site’s main (home) page.

You can get an idea about who runs a site by looking at the letters at the end of the URL address. Does the URL include .edu, .com, .org, or .gov?

• .edu means that the source of the information is part of an educational system (such as a college or university)
• .org usually means that the source is a non-profit organization
• .gov means that the source is the US government
• .com or .biz usually means the site is run by a commercial (for-profit) or private source

Knowing where the information came from can be useful because it may give you some insight into why the individual or organization is providing that information. In the US, the most reliable sources of health information tend to be government agencies, hospitals, universities, and major public health and health advocacy organizations, such as the American Cancer Society. These groups use information that is reviewed by noted experts and updated often.

Be sure to find out if the Web site comes from another country. This is important to know because while the general information may be good, treatment information, treatment availability, and cancer statistics in other parts of the world can be very different from the US.

The source of funding for the site should also be easy to figure out, as it can affect what is presented on the site and how it is presented. If the source is a commercial business, such as an advertiser or provider of a service or product, there may be some bias or prejudice in the information. Even on non-profit Web sites, if the site is full of ads or is supported or funded by an outside company, it’s important to ask yourself whether the information there might be slanted in some way. This is not always the case, but it should make you more cautious.

What is the purpose or mission of this Web site?

This is usually related to who runs the site. It is important to know the mission or purpose of the site. The source of information should make this clear. Often this can be found by clicking on “About This Site” or “About Us,” which can usually be found at the top or bottom of the main (home) page.

Again, Web sites designed to promote or sell products may be more likely to have slanted or inaccurate health information than sites designed to simply provide information. Some sites try to do both, but you should look at these carefully, too. Remember that if a Web site’s main purpose is to sell products, it will only contain the information the seller wants you to read.

Intended audience

Another thing to think about is whom the Web site is written for (the intended audience). It should clearly state whether the information is meant to be used by lay consumers (patients) or health professionals. Some health information Web sites have 2 different areas – one for consumers and one for professionals. The site should be designed so that you can choose the one you want to read. The information in both areas should be much the same, but the patient information should be written in a way that makes it easier to understand without using a lot of unfamiliar medical terms.

What is the source of information on this Web site? How is it documented?

Can you tell where the information came from? Is it based on scientific facts, or is it based on opinions or personal experiences? Personal stories, often called testimonials or anecdotal reports, may be quite moving, but they may not apply to you. Good information comes from studies that are done on large groups of volunteers, using careful methods to be sure that the result actually reflects what is being tested. Testimonials can evoke deep emotions, but they usually can’t be checked for accuracy. And testimonials describing another person’s experiences with a different kind of cancer (or even the same type of cancer, in a different stage or in someone with different medical problems) may not be related to the choices you are facing.

Can you tell what research was done to back up what is being said? More reputable Web sites will list references from scientific journals that support the information they give you.

Does the information seem biased? Is only a single viewpoint presented? Information should be balanced, giving the pros and cons of a subject. If the information describes a treatment, know that all treatments have unwanted effects in some people. If none are listed, that may be a warning sign.

Also, look for a disclaimer saying that the content is intended for information and not as medical advice. Information on the Internet cannot replace medical care.

How is the information reviewed? Who writes or reviews it?

Does the site tell you how the information is reviewed to be sure it is correct? For example, is the information reviewed by experts in the field? How often is it reviewed?

Who writes the material on the site? Try to identify the authors. If the authors are listed, are their credentials included?

You might even want to try typing the names of authors and experts into a search engine to learn more about them.

How current is the information?

How often is the information updated? Information in the field of medicine changes almost every day. What may have been the standard of care a couple of years ago may no longer be the standard of care today. Web pages should include the date the information was posted. If information on cancer treatment is several years old, you may want to look for and compare it to more recent information.

How does this Web site choose links to other sites?

Most reliable Web sites have a policy about setting up links with other sites. If the site gives links to other sites, are the links to trustworthy sites? Are they suitable to the subject matter? Are the linked sites selling products or services? Is it clear when you are leaving the original site?

What information does the Web site collect from you? Why?

If the site collects information from you, can you find out how this information is to be used? Can you look up information without giving any personal information? Does the information you are asked to give fit the purpose stated? If the answer to these questions is no, then you may want to look elsewhere.

The site’s privacy policy (usually seen at the top or bottom of the site’s home page) should be easy to get to and clearly explained. Some Web sites may automatically place you on email lists, or may sell your information to other organizations or companies. Know where your information may be going before giving it out, especially if you have included anything of a personal or financial nature.

Information like your social security number, credit or debit card numbers, driver’s license number, date of birth, or mother’s maiden name should not be requested on Web sites that exist for health information only. This kind of personal information should only be used when you have a trusted business relationship with the Web site and are sure you are on a secure page.

How do users interact with this Web site?

Is there a way for users to make suggestions and comments to the Web site? Most Web sites will offer you a way to give feedback on their site. If the site has a chat room or message board, is there a moderator or someone who monitors user interaction? Does the moderator give their credentials and tell you who pays them for the work they do?

Tips for finding reliable information

Links to other Web sites

Some Web sites also have lists of Web links. These are places that you can click on to go to similar types of sites. Once you find a Web site you trust and that meets your needs, you may be able to look for links on that site that take you to other useful and credible sites.

Warning signs

It may not be easy to get answers to each of the above questions. Even some reputable Web sites may fall short in certain areas. Another helpful way to size up a Web site is to look closely at what is there.

The US Federal Trade Commission (FTC) has developed a list of claims that should make you suspicious of a Web site:

• Claims of a “scientific breakthrough,” “miraculous cure,” “secret ingredient,” or “ancient remedy”
• 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
• 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 may make the product seem risk-free, it is often impossible to actually get your money back.)
• Web sites that don’t list the company’s name, street address, phone number, and other contact information

Problems in any of these areas should raise a red flag – a warning – to the user that the site may contain information that is not based on careful science and cannot be trusted. This may be especially important when looking at sites promoting complementary or alternative cancer treatments. (See our documents called Complementary and Alternative Methods for Cancer Management and Learning About New Cancer Treatments for more information.)

Health On the Net Foundation

Another tool you may use to assess the quality of a Web site is the Health On the Net Foundation (HON). HON is an organization based in Switzerland whose mission is to guide people to useful and reliable online medical and health information.

To be allowed to display the HON logo, participating Web sites must agree to abide by an ethical code of conduct. The HON code tries to improve the quality of medical information on the Internet through some basic principles which cover things like authorship, documentation of materials, and sponsorship of the site.

HON also tries to actively promote effective Internet use with specific medical search engines that give you reliable and scientifically sound information. For more information, visit the HON Web site at www.hon.ch.

Reporting inaccurate information

You can help make sure that health information on the Internet is correct. If you see something on a Web page you know is wrong, let those at the Web site know about it so that it can be fixed. This can usually be done by using the “Contact Us” link on the Web site.

If you have concerns that someone is making false claims on purpose, or trying to deceive people while selling a product, they may be breaking the law. Contact the US Federal Trade Commission at 1-877-FTC-HELP (1-877-382-4357) or at www.ftc.gov. The FTC does not resolve complaints, but tracks them to detect patterns of wrong-doing, which can lead to investigations and prosecutions.

The Food and Drug Administration (FDA) is responsible for regulating all drugs (prescription and over-the-counter) and dietary supplements (such as herbs, vitamins, and minerals), as well as the claims that can be made about them. The FDA has different standards of proof for supplements than for medicines, in that they do not review the effects of supplements on the body. (You can read more about this in our document called Dietary Supplements: How to Know What Is Safe.) More information is available on the FDA Web site (www.fda.gov). If you have a concern about unproven claims on a Web site, such as claims that a supplement has the same effects as a drug, or that it can prevent or cure an illness, you can let the FDA know through their Web site at www.fda.gov/Safety/MedWatch/HowToReport/default.htm.

Online support groups, mailing lists, and chat rooms

Online support groups are groups of people who share information and support over the Internet through chat rooms, discussion boards, or mailing lists. These Web sites allow people to connect with others like them who might otherwise be difficult to reach. They also allow a person to keep their real identity private if they want to do so.

Some people may find online support groups helpful. It may be comforting to share your experiences with other people who are facing the same things you are. Still, these places may not be the best sources of health information, especially if they are not monitored by trained professionals or experts. Any information you get should be discussed with your health care team to see if it applies to your situation. You should also be aware that sometimes researchers monitor the conversations of online support groups.

The Cancer Survivors Network®

The American Cancer Society’s Cancer Survivors Network (CSN) is an online community created by and for cancer survivors and their families to share their cancer-related experiences, support one another, and exchange practical tips learned while living with the challenges of cancer. It’s available on the American Cancer Society Web site at csn.cancer.org.

The CSN is a free service available around the clock. An easy and quick registration is all you need to access all areas of the community and actively participate in its many interactive features. Members may search for people with similar cancer experiences or interests, either by entering certain demographic information or by using keywords.

Interactive features of the CSN include: discussion boards, chat rooms, blogs, safe and secure internal CSN email, an Expressions Gallery with member photos, poems, audio, and more. CSN members are also able to create a personal page to share their story and to contribute to the member-created CSN Resource Library.

Finding other online support groups

Here are some ways to find other online support groups:

• The Association of Cancer Online Resources, Inc. (ACOR), at www.acor.org, is a non-profit organization that maintains a large collection of cancer-related Internet mailing lists. ACOR supports the mailing lists, and develops and hosts Internet knowledge systems that allow the public to find and use accurate, relevant information. They also try to educate users about privacy issues in Internet health care.
• OncoChat (www.oncochat.org) is another peer support group for cancer patients who share similar experiences. It is sponsored by ACOR.
• Many of the Web sites listed in the “Cancer information Web sites” section also offer support to people with cancer and their families.

What about the e-mails I get?

If you share your contact information, e-mails may start pouring in. Well-meaning friends and family may also send you e-mails with cancer information and various cancer treatment options. Carefully evaluate any e-mail messages you get. Consider the source of the message and its purpose. Many companies and organizations use e-mail to advertise or attract people to their Web sites. The accuracy of the information may be influenced by their desire to promote their product or service.

One way to sift through the information you get is to identify respected, reliable sources of health information and use them as primary resources. You can learn more about this in our documents called Learning About New Cancer Treatments and Learning About New Ways to Prevent Cancer.

Cancer information Web sites

The following are more specific examples of cancer information Web sites. These sources should only be used to get information. If you have a health-related problem, please see a doctor.

This list is not all-inclusive, and inclusion here does not imply endorsement by the American Cancer Society.

National organizations offering cancer information*

Along with the American Cancer Society (www.cancer.org) other sources of cancer information and support include:

Cancer.Net
Oncologist-approved cancer information from the American Society of Clinical Oncology (ASCO)
www.cancer.net

CancerWise
From the University of Texas MD Anderson Cancer Center
www.cancerwise.org

Medline Plus
A service of the US National Library of Medicine National Institutes of Health
www.nlm.nih.gov/medlineplus/cancers.html

National Cancer Institute (NCI)
The National Cancer Institute (NCI) is a part of the National Institutes of Health (NIH)
www.cancer.gov

National Comprehensive Cancer Network
An alliance of 21 of the world's leading cancer centers
www.nccn.org

Oncolink
From the Abramson Cancer Center of the University of Pennsylvania
www.oncolink.org

Searching for specific cancer-related medical research articles*

These sites allow you to search the medical literature for scientific articles published in medical journals. They are not helpful in searching for other Web sites or other types of information.

National Library of Medicine (main page allows access to several different databases)
www.nlm.nih.gov

PubMed/MEDLINE
www.ncbi.nlm.nih.gov/PubMed

US Government sites (not cancer specific) *

Centers for Disease Control and Prevention (CDC)
www.cdc.gov

Environmental Protection Agency (EPA)
www.epa.gov

Federal Trade Commission (FTC)
www.ftc.gov

Food & Drug Administration (FDA)
www.fda.gov

National Institutes of Health (NIH)
www.nih.gov

Complementary & alternative therapies*

National Center for Complementary and Alternative Medicine (part of NIH)
http://nccam.nih.gov/

National Cancer Institute
www.cancer.gov/cancertopics/cam

University of Texas MD Anderson Cancer Center
Complementary/Integrative Medicine Education Resources (CIMER)
www.mdanderson.org/departments/cimer

Memorial Sloan-Kettering Cancer Center (MSKCC)
About Herbs, Botanicals & Other Products
www.mskcc.org/mskcc/html/11570.cfm

Office of Dietary Supplements (part of NIH)
http://ods.od.nih.gov/

More information from your American Cancer Society

We have selected some related information that may also be helpful to you. These free materials may be ordered from our toll-free number, 1-800-227-2345, or read on our Web site at www.cancer.org.

Learning About New Cancer Treatments

Learning About New Ways to Prevent Cancer

Complementary and Alternative Methods for Cancer Management

Dietary Supplements: How to Know What Is Safe

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.

References

Health On the Net Foundation. Looking for reliable health information? Accessed at www.hon.ch/HONcode/Patients/visitor_safeUse2.html on May 5, 2011.

Federal Trade Commission. How to Find Health Information Online. Accessed at www.ftc.gov/bcp/edu/microsites/whocares/health.shtm on May 4, 2011.

Medical Library Association. A User’s Guide to Finding and Evaluating Health Information on the Web. Accessed at www.mlanet.org/resources/userguide.html on May 4, 2011.

National Cancer Institute. Evaluating Health Information on the Internet. Accessed at www.cancer.gov/cancertopics/factsheet/Information/internet on May 5, 2011.

Association of Cancer Online Resources. Accessed at www.acor.org on May 4, 2011.