DOING ONLINE RESEARCH

A diagnosis of cancer brings with it a million questions, and the first and most important source of information is your treatment team. Whatever your questions or concerns, you should never hesitate to share them with your physician. That said, doing research on your own can make the dialogue with your treatment team much more productive, and the information you gain will help you make informed decisions about your treatment plan.

The following are general guidelines on doing your own research online, as well as lists of some of the best sources of information for women with cancer.

The Internet
The Internet is one of the broadest and most important sources of medical information in the world. Unfortunately, it can also be one of the most unreliable. For every reputable Web site that contains well-validated facts, there are plenty of others that dish out poorly referenced, out-of-date, or just plain wrong information. Separating the wheat from the chaff is the greatest challenge of doing online research. Fortunately, the government and numerous medical associations have taken steps to monitor medical information on the Internet and to help consumers assess the reliability of Web sites. Both the American Medical Association (http://jama.ama-assn.org/issues/v285n20/fpdf/jpg0523.pdf) and the American Psychological Association (http://helping.apa.org/dotcomsense/) offer excellent guidelines for evaluating Web sites. Among the most important questions to ask:

Who's the source?
Government (Web sites ending with ".gov") and university-based (ending in ".edu") sites are less likely to have marketing agendas than commercial (".com") sites. While many nonprofit organizations (".org") have excellent Web sites, an organizationÃ,Â's political or social agenda may influence both the siteÂ's content and the sites to which they link. Organizational Web sites should include clear information on all sponsorship, advertising and commercial funding sources.

Who's verifying the information?
Most reliable sites have an editorial or advisory board whose members review and approve the content. Full names, credentials and basic contact information (preferably including e-mail addresses) should be provided for each of these individuals.

Is the site well-referenced?
Anecdotes from satisfied patients are not scientific proof. Facts and figures should be backed up with specific references from peer-reviewed scientific journals. If most of the references are from secondary sources such as newspapers or magazines, or if the majority of research is several years old, you might want to check out another site.

Is the information current?
Cancer research and treatment are constantly evolving. A good Web site will contain regular updates of all information. Each page should include the date of its most recent update.

• Marketing of specific products or services
• References from popular magazines and newspapers rather than recognized scientific journals
• Testimonials from patients without scientific backup
• Advocating one form of treatment over another
• Offers of online diagnosis or specific treatment advice
• Any claim of being "the best" source of information on a particular topic
• Access fees -- there is plenty of excellent, well-validated health information on the Internet for free.

The following Web sites are good starting points for your online research:

CanSearch Online Guide to Cancer Resources (www.cansearch.org/canserch/canserch.htm) -- The National Coalition for Cancer Survivorship offers one of the most comprehensive lists of online resources, all of which have been reviewed by the coalition's Internet committee. Here you'll find links to general cancer resources, lists of support groups and information on specific cancers from bone cancer to Waldenstrom's Macroglobulinemia. The coalition's online store also offers some excellent books on everything from employment rights to communicating with your physician.

CancerNet (http://cancernet.nci.nih.gov/) -- Operated by the National Cancer Institute (NCI), the federal government's agency for cancer research, this site offers up-to-date information on all aspects of cancer, including treatment options, clinical trials and ways to cope with cancer. A spare, straightforward design makes CancerNet easy to use -- and quick to download.

The American Cancer Society (http://www.cancer.org; 1-800-ACS-2345) -- ACS is the last word in facts, statistics and other information about cancer. Aimed at the general public, the site offers easy-to-read digests on all types of cancer as well as news on the latest treatment options, therapies and research. Those living with cancer will find advice on day-to-day concerns like treatment side effects and communicating with doctors, as well as insurance, financial and legal issues. A state-by-state guide offers information on patient services, free health materials, medical centers and local ACS branches.

Cancer Care, Inc. (www.cancercare.org; 1-800-813-HOPE) -- A social service agency devoted to helping patients and families cope with cancer, Cancer Care provides numerous free services including counseling, educational seminars and teleconferences. They offer special cancer briefs on specific diagnoses, pain, fatigue and side effect management, and information on clinical trials, health policy and advocacy. The Helping Hand Resource Guide is designed to show you what types of assistance are available to people with cancer and where you can find them. Whether you want general information on cancer or specific services, this resource guide is designed to answer your questions or direct you to someone who can.

OncoLink (http://cancer.med.upenn.edu/) -- Maintained by the University of Pennsylvania Cancer Center, OncoLink is full of well-referenced, carefully validated information on cancer treatment and survivorship, with links to resources around the world. The site also contains useful information on coping with financial issues, and reviews of books on cancer.

Steve Dunn's Cancer Guide (http://www.cancerguide.org/) Â-- Established by cancer survivor Steve Dunn, this site contains one of the best discussions of the pros and cons of doing your own research (http://www.cancerguide.org/pros_cons.html), as well as some useful information on how to be a proactive patient. Look elsewhere for medical information, though, as Steve is not a physician and there are no medical experts reviewing the site's content.

A Word About Forums and Chat Rooms
Forums, bulletin boards and chat rooms are great places to share ideas and get support, but they shouldn't be used as a source of medical advice. Too often, Internet discussion groups become a place where anecdotes and testimonials take the place of scientific evidence. Remember, every patient is different. If you hear something about a promising treatment in a forum or chat room, take the time to research it further in sources you know are reliable.

The Library & Bookstore
Run a search on "cancer" in most bookstore databases and youÂ'll come up with more than 8,000 titles. We've sorted through some of them to find several books that will serve as good starting points for your research. For a list of recommended publications, visit OncoLink's reading list (http://cancer.med.upenn.edu/reviews/), where you'll find information on some of the best cancer resources available.

Everyone's Guide to Cancer Therapy
By Malin Dollinger, MD. Ernest H. Rosenbaum, MD, Greg Cable

Diagnosis Cancer : Your Guide Through the First Few Months
By Wendy Schlessel Harpham, Ann Bliss Pilcher (Illustrator)

Informed Decisions : The Complete Guide to Diagnosis, Treatment, and Recovery from Cancer
(American Cancer Society, 2001)
By Harmon J. Eyre, Dianne Partie Lange, Lois B. Morris