The internet can be a very helpful resource for finding health information. There is so much on the internet these days that it can often be difficult to know where to turn, whom to trust, and what to believe, so it is important to have the right tools to know what sites are best and safest. In this presentation, Timothy Roberts, Medical Librarian at Hospital for Special Surgery, focused on a variety of important and helpful tools that consumers can use to search valuable websites regarding their health.
Mr. Roberts began his presentation first by discussing the importance of healthy web searching. He shared with participants how important it is to know where your sources of information are coming from, in order to be able to trust whether the information is reliable. Mr. Roberts, then, focused on navigating specific sites, with a focus on how consumers may find useful information on websites designed for professionals.
Many people find information on the web by typing in a phrase or a word into a search engine such as Google,. 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.
1. Consider the Source
When searching on the internet it is very important to know who is responsible for posting the information on the site.
- Look for an "about us" page. This offers readers an understanding of where the information is coming from, e.g.:
"I developed this site after my heart attack." vs. "This page on cardiovascular disease was developed by health professionals at the American Heart Association."
- Locate contact information for the organization or webmaster. If the site provides no contact information, or if you can't easily find out who runs the site, use caution.
All information on the internet has its own web address, also known as a URL. Looking at elements of the URL can help you figure out where the information is coming from. The middle part of the address is generally the name of the organization or company that owns the site. It can also be related to the purpose or the content of the site. One should keep an eye out for web addresses that are close to the names of reputable organizations, but don’t look quite right. A major company like American Express wouldn’t misspell their name in their URL by using 2 x’s, for example.
The last part of the URL or extension can help you know what type of organization information is coming from. Government websites have a “.gov” extension while commercial web sites have a “.com” extension. This can help you to decide how much you trust the information you find there.
- More Extensions:
- .gov (government websites)
- .edu (educational websites) and
- .org (non-profit organization)
- Websites outside the United States use a country code for their extension e.g. “.uk” for the United Kingdom or “.fr” for France.
- This does not mean that information that is talked about within a blog or via Facebook is not correct. In fact, many patients have a lot to offer to their peers regarding support and guidance with similar illnesses.
- 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.
If you are looking for more of a medical understanding and some clear answers about medications, treatments and so on, it is important to look on professional Web sites and, of course, to speak directly with your doctor.
2. Focus on Quality
Another important factor to look for when searching for medical information is whether the site has an editorial board.
- Determine whether the people writing the information are experts on the information being presented; i.e., medical doctors, researchers, etc.
- Look at the site’s editorial policy
- Is the information reviewed on an ongoing basis?
- How often and what is the review process?
- Who is supplying the information?
- Again, this information can be found within the “about us” page of the site.
- Check more than one source/website for information
- The more consistency in what you find, the more valid it may be.
Many people assume that information on the internet is current; this 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 some things like drug information, currency is very important.
For other information, like travel tips for people with arthritis, information that is a few years old may still be relevant. 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.
3. Who Pays for the Site?
Beware of bias--What is the purpose of the site? Who is providing the funding?
- It is often difficult to know who is sponsoring the site, in which it is important to:
- The “About US” section to see if it is clear who is sponsoring the site
- Keep an eye out for advertisements that look like health information. Advertisements should be labeled, or example, as ”Advertisement" or "From our Sponsor."
- Be cautious when clicking on advertisements, understanding that often companies are there for their own profit and are not necessarily a valid source of information.
4. Protecting Your Privacy
Health information should always be confidential. You should never have to provide any personal information to any site. If you want to give an email address for future information you must:
- Understand that if there is a registration form, notice what types of questions you must answer before you can view content, if you must provide personal information
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.
5. Consult with your health professional
Mr. Roberts emphasized the overall impotence of talking with your doctor about the health information you find. He highlighted how helpful it can be for you to go into your doctor’s office with questions and printouts of the information that you have found. You are the expert about your own body and your doctor is the expert about your illness, so collaboration is key!
The patient/doctor partnership can lead to the best care and medical decisions. Some things to keep in mind:
- Talk to your doctor about specific information that you feel is important to you and your health.
- Make a list before you go into the office so you do not forget
- Give your doctor a chance to read and process the information that you have
- Keep an open mind, your doctor may have a different opinion based on his or her own research and evidence
- Work together!
Mr. Roberts then shared some excellent websites from which to start an effective search of health information.
A broad search engine like Google is not recommended to locate health information. It may be helpful to use Google to find specific websites, however, if you forget the URL information.
Hospital for Special Surgery Website
The website on which this article resides, HSS.edu, contains a wealth of information on a wide range of musculoskeletal topics - particularly lupus and rheumatoid arthritis - including pieces dealing with diagnosis, treatment, medications, side effects, research, news, and related conditions.
The site provides in-depth articles written for both patients and health professionals on a variety of medical conditions and wellness issues written by HSS professionals. It also has a listing of HSS support & educational programs for people with lupus.
In the next segment of his presentation, Mr. Roberts previewed several additional websites that may be especially helpful for consumers wanting to learn more specific information about lupus.
Lupus Foundation of America
A "one stop shop" for patient health information, and a great place to start your search. Organized by the National Library of Medicine with information from National Institutes of Health, other government agencies and health-related organizations.
This website serves people with lupus and those who care for them. An animation, “What Is Lupus,” is especially helpful in understanding immune system issues in lupus.
NIAMS: National Institute of Arthritis and Musculoskeletal and Skin Diseases
Merck Manual: Home Edition for Patients
Merck Manual: Online Medical Library for Professionals
Lupus Alliance of America (Listing of affiliated members and chapters throughout the US)
Lupus Long Island/Queens Alliance
S.L.E. Lupus Foundation
Hong Kong Lupus Association (Chinese language patient information)
Once all patient-friendly resources have been exhausted, Mr. Roberts shared a few tips to take your research to the next level with websites designed for doctors and other health care professionals.
Mr. Roberts next described additional websites for consumers who may want more detailed and specific information. The following are some of the websites he reviewed:
Lupus Clinical Trial Information
Currently Funded Research Projects
Mr. Roberts also helped participants navigate through the following professional websites.
PubMed is a searchable database of references and articles published in over 5,000 biomedical journals. When you search PubMed, you will find brief information about scientific articles on your topic, and usually there will also be short summaries of the article (also known as abstracts). Sometimes you will find a link to the full text of the article; usually there will be a cost to get to the full article. It is the place to go when:
- You have exhausted the consumer health databases
- You are looking for emerging research
Things to keep in mind when searching PubMed:
- You will need to type out "Systemic Lupus Erythematosus" (not "SLE")
- When you find an article that looks like it is on topic, use the related articles feature to find more
- The abstract can be more patient friendly and concise than the article in terms of understanding the messageAccess to full articles is only available to health professionals or those officiated in health care settings
In New York City:
Myra Mahon Patient Resource Center
Mr. Roberts devoted the last part of his presentation to ways patients and their families can use the internet to help with making choices about their medical care. The following are helpful websites in this regard.
- Resource center for the public
- Located on corner of York and 70th across from Hospital for Special Surgery
- Hours Monday through Friday, 9am - 5pm
- Can send questions, and staff can help you to locate health information online or in person
- Allows you access to all of the articles that you would search for from PubMed
NYS Physician Profile
NYS Hospital Profile
In New York State:
Summary by Christie Carlstrom, SLE Workshop Coordinator and Social Work Intern