Finding Lupus Information on the Internet
Summary of a presentation given to the SLE Workshop on 9/28/07
The internet can be a great tool for finding health information regarding lupus and other conditions. But while there are some great sources for health information, there are also many websites with inaccurate or out of date content. As a result, using the internet to find accurate information about one's health can be intimidating.
In this presentation, Tim Roberts shared valuable strategies and tips for finding and evaluating accurate health information from the web, highlighting some resources of special value to our SLE Workshop members.
Tips for Using Search Engines
Many people find information on the web by typing in a phrase or a word into a search engine such as Google, Yahoo, MSN, or Ask. A common analogy that has been used to describe a search engine is that of a spider web. In this analogy, a person types in a phrase and a spider begins to crawl around the Web looking for information. Mr. Roberts cleared up this common misconception; in fact, search engines work by constantly sending out spiders that crawl around the web; the results of a search is what the "spider" remembers. Because of this, there can be a slight timelapse between when content is added to a page and when a search engine is able to find that content.
One of the challenges of using search engines is the large number of results that are unrelated to what the user is intending to research. There are, however, some ways to make searching more effective. One such trick shared by Mr. Roberts is putting phrases in quotation marks, which tells the search engine to look for that exact phrase rather than the separate words. For example, searching on "Star Wars" will only find those pages that match the exact phrase as opposed to finding each word anywhere on the page.
Another trick is to use the plus sign (+) when searching. An example would be if someone was interested in finding information on Pluto the planet and not the cartoon character. He or she could type in Pluto + planet, which would tell the search engine to only search for Pluto AND the planet, which will lead to more specific results.
What a Web Address Can Tell You
All information on the internet has its own web address, also known as a URL. This address can indicate where the information is coming from. The middle part of the address can be the name of the organization or company that owns the site, or it can be related to the purpose or the content of the site. One should keep an eye out for web addresses; reputable organizations won't misspell names or use the letter z instead of an s.
Mr. Roberts also directed the group to look at the last part of the web address, which can also indicate the source of the information. A web address that end in ".edu" means that it is a website belonging to an educational institution. Websites ending in ".gov" are governmental sites. The very common ".com" usually means that the owner of the website is a company, and ".org" indicates that the owner of the website is a non-profit organization.
Websites from foreign countries may end in country abbreviations like ".uk" for the United Kingdom or ".fr" for France.
Some websites have addresses that end in ".biz" or ".net" These addresses are very easy to obtain, so be wary when looking at sites that end with these.
Mr. Roberts also provided the group with some excellent tips taken from the MedlinePlus Guide to Healthy Web Surfing. Mr. Roberts shared that MedlinePlus is run by the U.S. National Library of Medicine and the National Institutes of Health and is an excellent source of basic consumer health information.
One way of evaluating a website is by looking at the source of the information and noticing what the credentials of the source are. Just as you would consider information shared with you by another patient in a waiting room differently than what your doctor tells you, you should do the same with web information.
Some questions to consider when looking at health information on the web include:
Is there any way to contact the organization?
Is the website focused on quality, and does it have an editorial board?
Are the board members experts?
Does the website indicate the process of reviewing information?
Does the website post its policy on why they include some information and exclude other information?
Check for Currency
Many people assume that because updating or posting information on the web is so easy, and because the internet is so frequently used, that it means that information on the internet is current, which is often not the case.
A good policy is to regularly check to see when the website was last updated, which can often be found in the footer (near the bottom) of the page on the site. For certain health conditions, information that is only two years old may be out of date. While this doesn't mean that the information is incorrect, it may be wise to check other sites to see if there is any updated information on the subject.
If a website has multiple broken links, which can appear in the form of a "404 error" or empty boxes that may have a small "x," it may mean that this website hasn't been updated in quite a while. Check back the following day to see if these linking problems are only temporary.
Be Cyber Skeptic
Many websites are trying to sell products, and many can be misleading in their effort. An example is a website that shared a story of a woman with lupus who reported on her website that she greatly benefited from using a certain nutritional supplement. Further investigation revealed that the woman's husband was the distributor of the product, which wasn't indicated on the website.
If a website has sensational writing style, such as the use of multiple exclamation points, use caution. A health website for the "lay person" should use simple language and not rely on medical jargon.
Who Pays for the Website?
One way of evaluating information online is to check to see who owns the website. Websites that are owned by certain organizations or companies may have biased content. A corporate sponsored website on certain medical treatments may be accurate, but may not be as comprehensive as a website owned by an organization that doesn't have a financial stake in such treatments. Check to see how the site is funded, whether by public funds, advertising, or donations. Remember that advertisements should be clearly labeled.
There is no reason to give credit card information to a health information website. Even if the website has accurate information and protects your credit card information, there is a likely a free and reliable alternative.
It is also a good idea to see if a website you are visiting has a privacy policy. If you decide to register for the chat area of a certain website, see if the website has posted its policy regarding the sale of email addresses for marketing purposes.
Good Sources of Health Information
The website on which this article resides, HSS.edu, contains a wealth of information on a wide range of musculoskeletal topics - particularly lupus - including pieces dealing with diagnosis, treatment, medications, side effects, research, news, and related conditions.
Additionally, according to Mr. Roberts, MedlinePlus (http://www.medlineplus.gov/) is an authoritative, and up to date, consumer health site that covers a broad array of health topics. The site is maintained by the National Library of Medicine, which collected health information from different government agencies, including the National Institutes of Health, hospitals, and other reputable organizations, and made the information available for consumers. MedlinePlus includes extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and the latest health news, both in English and in Spanish.
Another interesting website which Mr. Roberts directs the group to is http://www.clinicaltrials.gov/, which is a government registry listing clinical trials being conducted in the United States and around the world. It lists information such as the trial's purpose, who can participate, and who to contact. It can be searched by condition and location. In addition, he shared the website for lupus trials, http://www.lupustrials.org/, which links to http://www.clinicaltrials.gov/.
New York State maintains a website (http://www.nydoctorprofile.com/) that profiles all licensed physicians practicing in the state. This website lists where doctors have been educated, their practice information, the hospitals at which they retain privileges, as well as information regarding any legal or disciplinary actions taken against the physician.
New York State also has a similar website profiling hospitals (https://profiles.health.ny.gov/hospital/) which provides information about hospitals such as types of service offered, the number and types of procedures being done, as well as quality indicators.
Good Sources of Lupus Information
In addition to HSS.edu, with its section devoted to summaries of presentations given by guest lecturers on various lupus topics to the SLE Workshop at HSS, Mr. Roberts suggested other good sources of lupus information on the internet, including the website of the Lupus Foundation of America (http://www.lupus.org/). The S.L.E. Lupus Foundation (http://www.lupusny.org/) also has very good information on its website, including patient support resources.
A website serving people with lupus and those who care for them, http://www.dxlupus.org/, is a project of Rheuminations, Inc. An animation, "What Is Lupus" is especially helpful
in understanding immune system issues in lupus, and a guide to navigating the site is provided.
The Hong Kong Lupus Association site has Chinese language patient information at http://www.hklupus.org.hk/.
Additional sources related to lupus research are the Lupus Clinical Trials Consortium (http://www.lupusclinicaltrials.org/), the Lupus Research Institute (http://www.lupusresearchinstitute.org/) and the Alliance for Lupus Research (http://www.lupusresearch.org/).
Learn more about the SLE Workshop, a free support and education group held monthly at HSS.
Summary by Caroline Norris
Tim Roberts, MLS
Medical Librarian, Kim Barrett Memorial Library
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