|
|
|
 |
|
| Cancer Information & Support Available Online |
|
Cancer Information on the Internet
There is a vast amount of information about cancer on the Internet. This information can be very valuable to those facing cancer in making decisions about their illness and treatment. It is, however, important to consider the credentials and reputation of the organization providing the information since any group or individual can post information to the Internet. In order to find this information, it is helpful to understand the basics of the Internet.
What is the Internet?
Simply put, the Internet is a network of computers that are linked together. It can be accessed through the use of a telephone line. The World Wide Web (WWW or Web) is a part of the Internet that is made up of words, pictures and sounds. A web site or web page is a collection of information at a single location or document on the Web. This information is stored on a server that is a sophisticated computer designed to interact and communicate with the Internet. Each web site has it's own address or URL (Universal Resource Locator).
How Can I Access the World Wide Web?
To access the world wide web, you must have a computer, a modem (a device used for converting digital information in order to send information over telephone lines), a phone line, an Internet Service Provider, and Internet software with a browser (such as Netscape or Internet Explorer). There are many different providers with different types of accounts for differing needs so it is wise to shop around for the plan that will suit you. When you sign up with an on-line service provider, you will be provided with the software that you need to access the Internet. Once you are set up with an account and your software is installed, you are ready to browse the web.
What is a Search Engine?
There are literally millions of web sites on the Internet. To find the specific information that you are looking for, you will need to search for it. To do this, you will use a search engine. When you enter a keyword or phrase into a search engine, the engine "crawls" through the Internet looking for the information you want and providing you with a list of links to web pages related to the keyword you entered. Most search engines are free to the user. There are many different search engines available and not all engines will produce the same information. To find the most information, it may be useful to use several engines when searching a topic since they might find different web links. There are also some engines that will search several engines at the same time. Once you are on a particular web site, you can often link to other related sites with the click of the mouse. Some examples of search engines are:
- AltaVista (www.altavista.com)
- Yahoo (www.yahoo.com)
- Excite (www.excite.com)
- Lycos (www.lycos.com)
- About.com (www.about.com)
Cancer Related Information
Cancer information on the Internet can come from a variety of sources. Almost anyone can post information on the World Wide Web; thus information obtained from the Internet should be used for informational purposes only since some of the information may be incorrect. The information found on the Internet is not intended as a substitute for medical advice. If you have a health-related problem, please talk to your doctor.
What Type of Cancer Information Can I Find on the Internet?
Depending on the web site, you can find out basic facts about specific types of cancer, locate the most current clinical trials, and find support in coping with cancer. You may be able to access information on research articles or abstracts, doctors and hospitals, and cancer treatment guidelines, drug information and alternative therapies.
How Can I Be Sure that the Information I Receive is Accurate?
The Health Summit Working Group, supported by a grant from the Agency for Health Care Policy and Research (a part of the U.S. Department of Health and Human Services), established a set of seven criteria for assessing the quality of health-related information on the Internet. These are:
Credibility
The most reliable sources are major organizations, such as the American Cancer Society, government agencies, hospitals, or universities, whose information is reviewed by noted experts and updated frequently. Less reliable information will be anecdotal reports or claims for some alternative therapies that have not been researched. It is helpful to try to identify the source of the information. This can usually be found in the header or footer of the page. Also, look at the letters at the end of the URL address. Is the URL .edu, .com, .org, or .gov ? If the address ends with .edu this means that the source of the information is part of an educational system. If the URL extension is .org, this usually means that the source is a non-profit organization. If the extension is .gov it indicates that the source is the government. If the address ends in .com usually refers to a commercial (for-profit) or private source. Knowing the source of the information can be useful since it will give you an idea of the credibility of the information. If the source is a commercial business such as an advertiser or provider of a service or product, there may be some bias in the information. It will also help you to know if the source is a major medical center or well established national organization. Try to identify the author. If the author is listed, are their credentials included? Is the information current? Most web pages will include the date the information is posted on the Internet in the header or footer. Does the site indicate how the information is reviewed for accuracy? For example, does the information undergo a peer review process?
Content
Is the information accurate and based on scientific data or is it based on assumption or personal experiences? Many larger institutions will list references from scientific journals that support the information provided. Also, look for a disclaimer indicating that the content is intended for information and not as medical advice. Information on the Internet does not replace medical care. People with medical problems are encouraged to seek the advice of a qualified healthcare provider. Information should be balanced, providing the pro's and con's of a subject and options and not just one point of view. Less reliable information will be anecdotal reports (stories).
Disclosure
It is important to know the purpose of the Web site and the source of information should make this clear. Try to determine if the site is trying to sell a product or service. If the site collects information from you, is it clear how this information is to be used? Do you have the option to access information without providing personal information? Is the information provided appropriate to the purpose stated? If the answer to these questions is no, then you may want to consider other sources of information.
Links
If the site provides links to another Web site, is it clear when you are leaving the original site? Is the link appropriate to the subject matter or is it unrelated? Is the link selling a product or service?
Design
It is important that the information on the Web site be arranged in a logical fashion that is easy to navigate. If special browsers are needed to access certain information, the site should provide options to access the information. For example, if the information requires that you have the Adobe reader in order to view the material, do they provide a link to download the Adobe software? Does the site provide a way for you to search the information on the site by entering a keyword or phrase? If it does, is relevant information retrieved?
Interactivity
Is there an established mechanism for users to communicate suggestions and comments to the Web site? Most Web sites will offer you the opportunity to provide feedback on their site. If the site provides a chat room, is there a moderator or someone who monitors the chat room? Does the moderator provide their credentials and source of their compensation?
Caveats (Warnings)
It is important to know if the site is trying to sell a product or service. Sites that are commercially focused may not provide the most unbiased information. For additional information on the Health Summit Working Group contact: www.hitiweb.mitretek.org/hswg Another tool you may consider using to assess the quality of a Web site is the Health On the Net Foundation HON) (www.hon.ch) In order to be allowed to display the HON logo, the participating Web sites have agreed to abide by an established code of conduct. The HON code does not rate the quality or the information provided by a Web site. It only defines a set of rules designed to make sure the reader always knows the source and the purpose of the information provided by the site.
On-line Support Groups/Mailing Lists/Chat Rooms
Some people may find on-line support groups helpful. It may be comforting to chat with other people facing similar situations. Chat rooms however, are not the best source for locating health information, especially if they are not monitored by trained professionals or experts. Any information you receive should be discussed with your healthcare team to determine if it applies to your particular situation. Be aware also that in online support groups, sometimes researchers ask to monitor the conversations of the group. If you want privacy, use a pseudonym (not your real name). There are several ways to locate on-line support groups. The Association of Cancer Online Resources, Inc. (ACOR), (www.acor.org) is a non-profit patient advocacy organization. ACOR's mission is to develop, support, and represent Internet based resources to cancer patients and their families. ACOR supports approximately 70 on-line support groups on various cancer-related topics. OncoChat is another peer support group (www.oncochat.org) for cancer patients who share similar experiences. The Medicine On Line (www.meds.com/mol/welcome.html) Web site has links to on-line mailing lists. Another resource is OncoLink Automated E-mail Discussion Group provided by the University of Pennsylvania Cancer Center (www.oncolink.upenn.edu/forms/listserv.html). By signing up for this group, you can e-mail others with similar interests. Providing information on these Web sites does not imply endorsement by the American Cancer Society.
Cancer Information Web Pages
Following are examples of cancer information Web sites. These sources should be used for informational purposes only. If you have a health-related problem, please consult a physician.
General Cancer Information
American Cancer Society: www.cancer.org
National Cancer Institute: www.nci.nih.gov
Cancernet: www.cancernet.nci.nih.gov Cancer information
Clinical Trials Search Form for Patients: cancertrials.nci.nih.gov
University of Pennsylvania-Oncolink: www.cancer.med.upenn.edu
Patient Services & Support
National Coalition for Cancer Survivorship: www.cansearch.org
Corporate Angel Network: www.CorpAngelNetwork.org
Hospice Net: www.hospicenet.org
Hospice Foundation of America: www.hospicefoundation.org
Hospice Association of America: www.nahc.org
National Hospice Organization: www.nho.org
National Association for Home Care: www.nahc.org
Mayday Pain Center: mayday.coh.org
Ronald McDonald House: www.rmhc.com/index.html
National Association for Continence: www.nafc.org
International Association of Laryngetomees: www.larynxlink.com/ial/ial.htm
Can Cope: www2.cancer.org/bcn/cope.html
Candlelighter's Childhood Cancer Foundation: www.candlelighters.org
National Rehabilitation Information Center: www.naric.com/naric
National Lymphedema Network: www.lymphnet.org
Wellness Community: www.thewellnesscommunity.org
Meals on Wheels Association of America: www.projectmeal.org
PhRMA Drug Assistance Programs: www.phrma.org/patients/pa3.html
Clinical Trials
NCI Cancer Trials: cancertrials.nci.nih.gov
Centerwatch Clinical Trials Listing Service: www.centerwatch.com
Oncolink www.oncolink.upenn.edu/clinical_trials
International Cancer Resources
International Union Against Cancer (UICC) www.uicc.ch
Telescan: www.telescan.nki.nl
Cancerhelp UK: www.medweb.bham.ac.uk/cancerhelp/indexg.html
University of Newcastle Guide to Internet : www.ncl.ac.uk/child-health/guides/clinks6.htm
Cancerbackup: www.cancerbackup.org.uk
World Health Organization: www.who.ch
Search Engines for Cancer-Related Medical and Scientific Research
National Library of Medicine (includes MEDLINE): www.nlm.nih.gov/
Grateful Med (Medline Searches): igm.nlm.nih.gov
PubMed: www.ncbi.nlm.nih.gov/PubMed
CANCERLIT Bibliographic Database: cnetdb.nci.nih.gov/cancerlit.shtml
Government Sites
National Cancer Institute: www.nci.nih.gov/
Food & Drug Administration: www.fda.gov
National Institutes of Health: www.nih.gov
Centers for Disease Control and Prevention: www.cdc.gov
National Institute for Occupational Safety and Health: www.cdc.gov/niosh/homepage.html
Environmental Protection Agency: www.epa.gov
Alternative & Complementary Therapies
NIH Office of Alternative Medicine: www.altmed.od.nih.gov
Quackwatch: www.quackwatch.com
University of Texas Center for Alternative Medicine Research: www.sph.uth.tmc.edu/utcam/default.htm
Other Resources
Association of Cancer Online Resources, Inc. (ACOR): www.acor.org
OncoChat: www.oncochat.org
Health On the Net Foundation (HON): www.hon.ch
Health Summit Working Group: www.hitiweb.mitretek.org/hswg
*Inclusion on this list does not imply endorsement by the American Cancer Society.
Revised 3/1/2000
|
|
|
|
|
