I am often asked where cancer patients and their family members can receive reliable information about cancer diagnosis, staging, treatment and prognosis. While there are a number of excellent publications to which I can direct them, I often direct them to websites. At its best the web can offer excellent, unbiased, non-technical information about any number of cancer-related topics. There is, however, a “dark side” of the web when it comes to cancer-related information. Some websites can contain information that is out-of-date, commercially biased (towards a particular product or service), biased towards non-mainstream theories of cancer causation or biased towards cancer treatments that have not been scientifically tested. How does one searching for cancer-related information mine the web for all the gems it contains while avoiding the false claims? While I certainly would not claim to have discovered a fool-proof method to do this, I have had quite a bit of experience searching the internet for cancer-related information. Here are some pointers to help you in separating the “wheat from the chaff” of the World Wide Web’s cancer-related websites.
Rule One: Know Who Sponsors the Site
This may seem obvious but I have seen situations where a not-very-major organization’s website comes up high on a list of websites in response to a web search. I will not take the time to read a website if I can’t clearly tell who is sponsoring it. Some of the best cancer related websites are sponsored by the following organizations: Avera, The American Cancer Society, The National Cancer Institute, The Abrahamson Cancer Center of the University of Pennsylvania (Oncolink), the American Society for Clinical Oncology, the American Society for Radiation Oncology, the National Organization for Rare Disorders, The University of Texas M.D. Anderson Cancer Center, the National Library of Medicine (Medline plus and Pubmed), the National Comprehensive Cancer Network and the Association of Cancer Online Resources.
Rule Two: Always Read Websites Sponsored by a Government Agency or a Major Cancer-Related Non-Profit Organization First
This gives me a good “lay of the land” for what the mainstream views are on the topic before reading on the same topic elsewhere on the web. This allows me to detect websites with commercial bias more easily.
Rule Three: Caution Is Needed When Reading on Websites That Are Not Moderated by Health Care Professionals
Often a patient or a family member may post something online about a treatment or a side effect of a treatment that is inaccurate. These posts are almost always by people who are trying to help others but who do not understand the situations in which a treatment would be useful or the likelihood of various treatment-related side effects. Please don’t ever make assumptions about whether you or a loved one would benefit from a particular treatment based solely on something that you have read on the internet. Please take these questions to a health care provider who can make sure that they are answered correctly. You and your loved ones deserve nothing less.
Having given you a lot of warnings about the internet, I certainly don’t want to discourage you in your quest for cancer-related information. I, like many health care providers, am really pleased when my patients take the time to educate themselves about various health-related topics so that they can be better partners in their own care. Happy hunting!