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For many people, the Internet has become the first place to go
for important information. It gives you instant access to almost any
topic you can think of. Today many households have computers. Computers
cost less than ever, are easy to use, and most students need them for
schoolwork.
There is a lot of cancer information on the Internet. This
information can help people facing cancer 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 may be able to get information on research
articles, doctors and hospitals, cancer treatment guidelines, drug
information, and on complementary and alternative therapies.
Unfortunately, there is a great deal of bad information out
there too. Some comes from well-meaning but misinformed people. There
are also those who purposely try to deceive people, either to sell
their ideas or their products. Because of this, it is important to
consider the credentials and reputation of the person or organization
providing the information. Always remember, not all information is good
information. And bad information can hurt you when it comes to cancer.
Getting around the Internet
The Internet is actually a huge network of computers. The most
popular feature on this network (the Internet) is the World Wide Web or
www. The World Wide Web is really a collection of Web sites, which are
housed on computers around the world. The Internet and its Web sites
can be accessed from any computer (or other wireless electronics such
as cell phones or palm devices) that are connected to it.
There are millions of Web sites on the Internet. Finding sites
that show you what you are looking for can be tricky. If you know the
Web address (also known as the uniform
resource locator, or URL)
of the exact Web site you are looking for, you can just type this in to
be taken there.
But what if you're looking for information on a certain topic
and don't know where to look for it? To find the information that you
are looking for, you need to search for it. To do this, you use a search engine. When
you enter a keyword or phrase into a search engine, the engine "crawls"
through the www looking for the information you want and then gives you
a list of links to Web pages related to the word or phrase you entered.
Most search engines are free to the user.
There are many different search engines out there, and not all
engines will give you the same results or links to information. To find
the most information, it may be useful to try using a few different
search engines when searching a topic, as they might find different Web
sites. Some examples of popular search engines are:
Some of the sites, such as Google, are designed mainly for
searching, while others, such as Yahoo, have a search engine as part of
a larger Web site that has other functions too. This is by no means an
all-inclusive list, and new search engines are being developed all the
time.
Keep in mind that all of these search engines return
'sponsored' findings with their search results. Often, these links are
at the top of the result list. Sometimes you will find helpful
information links there, but many of the sponsors are trying to sell a
product to make money. Although seller information can be helpful for
many products, it is not likely to be the kind of information you would
want to use in choosing your cancer treatment.
Most Web sites also have lists of Web links or somewhere
that you can click on to go to similar types of sites. A link will
usually be underlined, or in a special color, or have some other sort
of sign to let you know that if you click on it, you will be taken to
another place on the Internet. Once you find a Web site you trust and
that meets your needs, you may be able to look for links that take you
to other useful sites.
User beware
Cancer information on the Internet comes from many different
sources. 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. A
few will even try to deceive you.
Scam artists and other dishonest people use the Internet for 2
important 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, but just that some caution is always advised. Even on
trusted, highly regarded Web sites, it is 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 what you've been feeling.
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 this
site?
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 a person 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 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 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 the source of the information can be useful because it
may give you some insight into why the individual or organization is
providing that information. 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, whose information is reviewed by noted experts
and updated often.
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", 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 those whose main
purpose is to sell products fill their Web site only with what they
want you to read.
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?
Anecdotal reports or "personal stories," often called testimonials, 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. While testimonials can evoke deep emotions, 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, be aware 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 before it is
put on the Web site? 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 do they review the material?
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 on
the Internet. 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 will have a policy about setting up
links with other sites. If the site gives links to other sites, are the
links to trustworthy sites, and 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 this 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 your personal information? Does the information you 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 main 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, is there a moderator or
someone who monitors the chat room? Does the moderator give their
credentials and tell you who pays them for the work they do?
Shortcuts to finding reliable information
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 single product can do this.)
- Case histories of people who've had amazing results (but no
clear scientific data).
- Claims that a product is available only from 1 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 fail to 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 the American Cancer Society document, Complementary
and Alternative Methods for Cancer Management for more
information. You can get it by calling our toll-free number,
1-800-ACS-2345)
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.
The organization 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 (www.hon.ch).
Reporting inaccurate information
You can help ensure 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" button 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 online at www.ftc.gov.
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 the American Cancer Society document, Dietary
Supplements: How to Know What is Safe. It can be ordered from
our toll-free number, 1-800-ACS-2345.) 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 a form on
their Web site at www.fda.gov/opacom/backgrounders/problem.html#problems.
Online support groups, mailing lists, and
chat rooms
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. 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
he or she chooses.
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 ask to monitor the
conversations of online support groups.
The Cancer Survivors Network (CSN) is the American Cancer
Society's Web-based support service for cancer survivors and their
families, caregivers, and friends. The Cancer Survivors Network was
created by and for cancer survivors and their families. Their mission
is to address the need to connect with others who have been touched by
cancer, to share their experiences, and to support one another. You can
go to the CSN Web site at www.acscsn.org.
Registration at this site is not required, and you can get to most of
the material on the site without doing so. But if you decide to become
a registered user, you can:
- View CSN members' personal Web pages to find others like
yourself, email other CSN members, post to the discussion boards, and
have private chats.
- Create your own personal Web page to share your
experiences, thoughts and wisdom. You can even post photos on your
page.
- Get the monthly e-newsletter.
- Get an alert each time you receive new CSN email.
- Post poems, music, artwork, favorite quotes or other
inspirational messages in the Expressions Gallery.
- Create your own personal support community using the
friends list.
- Start new, virtual support communities of people who share
your concerns and interests.
- Customize your own start page to organize the site for your
specific needs.
- Post information about resources you have used and would
recommend to other survivors or family caregivers.
Here are some ways to find other online support groups :
- The Association of Cancer Online Resources, Inc. (ACOR), (www.acor.org)
is a non-profit organization that maintains a large collection of
cancer-related Internet mailing lists. In addition to supporting the
mailing lists, ACOR develops and hosts Internet knowledge systems that
allow the public to find and use accurate, relevant information.
Another goal of the organization is to improve communication between
patients and health care providers through advocacy in a variety of
public forums including the media and professional arenas. 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.
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 by no means all-inclusive, and inclusion here
does not imply endorsement by the American Cancer Society.
National organizations
In addition to the American Cancer Society (cancer.org) other
sources of patient information and support include:
Cancer.Net
www.cancer.net/portal/site/patient
CancerWise (an online newsletter from The University of Texas
MD Anderson Cancer Center)
www.cancerwise.org
Medline Plus
www.nlm.nih.gov/medlineplus/cancers.html
National Cancer Institute (NCI)
www.cancer.gov
National Comprehensive Cancer Network
www.nccn.org
People Living with Cancer (American Society of Clinical
Oncology)
www.plwc.org
Oncolink (Abramson Cancer Center of University of
Pennsylvania)
www.oncolink.com
oncologychannel: Your Oncology Community
www.oncologychannel.com
Searching for specific cancer-related
medical research articles*
These sites allow you to search the medical literature for
scientific abstracts of articles published in medical journals. They
are not helpful in searching for other Web sites or 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*
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 Cancer Institute (NCI)
www.cancer.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/cancerinfo/treatment/cam
University of Texas 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/index.aspx
Other resources*
Association of Cancer Online Resources, Inc. (ACOR)
www.acor.org
Health On the Net Foundation (HON)
www.hon.ch
OncoChat
www.oncochat.org
Quackwatch
www.quackwatch.org
*Inclusion on
this list does not imply endorsement by the
American Cancer Society.
No matter who you are, we can help. Contact us anytime, day or
night, for information and support. Call us at 1-800-ACS-2345 or
visit www.cancer.org.
References
About Health on the Net Foundation. Available at www.hon.ch.
Accessed March 18, 2008.
Federal Trade Commission. Health claims on the Internet: Buyer
beware. Available at:
www.ftc.gov/bcp/conline/features/healthclaims.htm. Accessed January 30,
2006.
National Cancer Institute. How to evaluate health information
on the Internet: Questions and answers. Available online at:
www.cancer.gov/cancertopics/factsheet/Information/internet. Accessed
March 19, 2008.
Association of Cancer Online Resources. Available at
www.acor.org. Accessed March 18, 2008.
Revised: 04/21/2008
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