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Online research for cancer requires vigilance

 

Last updated 1/13/2022 at 5:53pm



FALLBROOK – Cancer patients are increasingly looking beyond their traditional sources of information – physicians, friends and family – and turning to the internet for information.

While the internet is a readily available source of information it can be an overwhelming source of misinformation. A lot of what passes for cancer information on the internet is opinion, salesmanship and testimonials, and is not grounded in careful science. It may take some extra time and effort, but it is important that patients find accurate reliable information. The wrong information can be harmful.

On many websites, there are basic facts about certain types of cancer and vast amounts of information on research studies, doctors and hospitals, cancer treatment guidelines, drugs and complementary and alternative treatment methods.

User beware – Cancer information on the internet comes from many different sources – expert organizations such as Susan G. Komen, government agencies and universities along with merchants, interest groups, the general public and scam artists. Anyone can post any kind of information online, and some people may be passing along information that is inaccurate or just plain wrong. Some even try to deceive the reader. Even when patients go to a reputable site, they need to discuss the information with their doctor.

Many of the links are for sponsored findings. These are actually advertisements for a specific product. Seller information can be helpful for many products, but it is still something that should be discussed with a physician.

The following tips can help discern which sites are trustworthy:

• Any honest, health-related site should make it easy to find out who is responsible for the information on it. Click on “About Us” and look at the website address.

◦ EDU – means it is from a college or university

◦ ORG – means it is from a nonprofit organization

◦ GOV – means is it part of a national or state government

◦ COM or BIZ means it is a commercial or for-profit site

Information from foreign countries usually has the country code in their web address

In the U.S., the most reliable sources of health information tend to be government agencies, hospitals, universities and major public health organizations such as Susan G. Komen for breast cancer information and The American Cancer Society for all cancers information.

It is important to look for where the information came from. Is it based on scientific fact or is it based on opinion or personal experiences. Personal stories, often called blogs, may be quite moving, but they may not apply to other individual circumstances. A few people stating that they have done well on a particular treatment does not mean that most people will.

Good information comes from studies that are done on large groups of people, using careful methods to be sure that the results actually reflect what is being tested.

• Look to see if the information has been reviewed by experts.

• Make sure the information is up to date.

• They should not ask for personal information.

The Federal Trade Commission has developed a list of claims that should make people suspicious of a website.

• Claims for “scientific breakthrough,” “miraculous cures” or “ ancient remedy”

• Claims that product can cure a wide range of illnesses

• Stories of people with amazing results

• Money-back guarantee

• Websites that do not list the company’s address and contact information

Some reliable sources are:

• Susan G, Komen, https://ww5.komen.org

• National Library of Medicine, http://www.nlm,nih.gov

• PubMed/Medline, http://www.ncbi.nlm.nih.gov/PubMed

• National Institute of Medicine, http://www.nih.gov

• National Cancer Institute, http://www.cancer.gov

• National Center for Complementary and Alternative Medicine, http://nccam.nih.gov

• Office of Dietary Supplements, http://ods.od.nih.gov

 

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