Health Information on the Web
To Your Health -- CHRC Newsletter
Winter 2000
Community Health Resource Center Newsletter
Winter 2000
Volume 5, Number 2
Ed Bierman, MLIS, PAMF Internet Manager (webmaster@pamf.org)
Like every other sector of society, the Information Age is affecting health care in new and profound ways. In this age of managed care and the need for each individual to be informed about their own health maintenance, the Web is great tool to use. The key to using the Web is to understand both the risks and promises to be found. Information is health power!
Studies have clearly shown that an individual empowered with health information makes better decisions about his or her own health and can improve his or her quality of life (Fries, Koop, Soklov, Beadle and Wright, p. 75). Health education through such means as reading literature, taking classes and information found on the Web can also improve healthy habits.
The purpose of this article is to provide some understanding about what to look for when using the Web to find health care information. It is not intended as a long directory of Web sites to check out. There are simply too many aspects of personal health and disease to make that very useful.
Finding the Good Stuff
The first rule of using health information from the Web is to know the source of the information. What is the reputation of the person or institution that is publishing this material? A health Web site should clearly indicate the author(s) and their qualifications.
Medical knowledge is always growing so the user should check the date the page was posted to the Web site or the date of references used in the article. If something has been posted on the site for several years without modification or review then it is a good bet that some or all of the content might be out of date.
A Web site should never propose a personal diagnosis or suggest a course of treatment for an individual. This can only be done by a qualified professional who is able to properly examine a person first-hand and to discuss his or her medical history.
If the Web site contains advertisements or is commercially underwritten, the user should ask if there are any biases in the information presented. Are they trying to sell something, or to educate the consumer? Even non-commercial sites should be examined for any potential conflicts of interest in the information presented.
Use common sense. Just because it is on the Web doesn't mean that it is authoritative or truly written by a medical professional. Checkout the sources and be very suspicious if there are claims of miracle cures.
Two sites that I highly recommend to learn more about judging a site are:
The Quality Information Checklist QUICK (http://www.quick.org.uk/): a fun tutorial about checking information on the Web from two health organizations in the U.K.
Internet Healthcare Coalition IHC (http://www.ihc.net/): a coalition that works to provide guidelines for monitoring health information on the Web.
Privacy on the Web
Our personal health history is probably the most sensitive and private set of facts that we protect in our lives. Even someone with a nearly problem-free medical history would be terribly upset if they knew that someone other than their personal physician knew anything about it. Privacy, especially personal health history, in the new Information Age is a major concern for most people.
Being Watched
A common fear on the Internet is how much can someone find out about me when I use the Web? This is especially true if the user is looking for health information around a sensitive topic like family planning, a sexually-transmitted disease or a chronic illness? Can someone track where I've been on the Web? The fact is how much personal health information a person gives away on the Internet is really up to the individual. Some would rather have no one know anything about them. If that is the case then it might be best not to surf the Web at all.
By the nature of the technology, a person leaves a trail anywhere he or she goes on the Web. In general, the information contained in that trail includes the location of the person's Internet provider and possibly a login name of the user.
In these cases, personal health information is not at great risk. Someone would have to work very hard to connect an individual with an Internet identity. The information gathered only shows a person's interest in a topic and not necessarily personal medical background.
- There is one exception: It is very easy for a company to monitor the movements of someone surfing the Web from a company workstation. A company has the ability and in most cases the right to monitor all sites visited by their employees.
Beyond general recording of surfing habits, the individuals behind a Web site only have as much information about a person as that person is willing to give to them. Web sites often encourage "registration" of their users for special features such as entry into a contest, access to unique e-mail newsletters, special valuable content, and of course, personal information is obtained when ordering a product. This registration process may be as simple as recording a person's e-mail address and a password to "login." Registration on a health site may also include questions about a person's age, gender and health interests.
The user has the choice at this point as to how much he or she wants these individuals to know about his or her personal medical history or interests. Some questions should be asked before handing personal information over:
- Is there a policy stated on the site about whether the information collected would be sold to a third party? For example, I recently ordered airline tickets from a Web site and two weeks later I received a luggage catalog in the mail that I had not requested. They had gotten my name and address from the site where I ordered the tickets.
- What type of security is used to protect the data? Is there any technical information on the site about what security is used? Are there any statements of confidentiality?
- Remember, once someone has given personal information on a Web site he or she has made it much easier for the owners of the site to connect all that data about what someone reads and where they go to a real person. This enables Web marketers to build very sophisticated profiles of their registered users.
A person should be informed about how much he or she is revealing especially when they are dealing with something so private as their health information. The individual should balance the benefit between what information is desired or wanted and how much information is required of them to obtain it. Then an informed choice can be made.
My Top Five Health Sites
There are literally thousands of Web sites around the world that are focused on health information. Here are 5 good examples. One or more of the physicians at PAMF has also recommended these sites and they all serve as good jumping off points for searching the Web. PAMF, however, does not sponsor or guarantee the information found on these sites. Please consult with your physician if you have questions about your own personal health care.
* General Information (non-commercial)
Family Doctor (http://familydoctor.org/)This site sponsored by the American Academy of Family Physicians is probably one of the best all around health information sites on the Web with no outside advertising. The site includes over 200 clinically reviewed articles on health topics for men, women and children. There are also 25 flowcharts for self-care including such topics as how to treat a cold, lower back pain, fever and diarrhea.
* General Information (commercial)
- Babycenter (www.babycenter.com)This award-winning site is designed for pregnant women and parents. The main feature of Babycenter.com is a free monthly e-mail newsletters offered to registered users. It focuses on pregnancy and the development of a child. Interactive features on the site include community bulletin boards, chat rooms, a baby-naming feature, and conception calculator. This is a commercial site and ads do appear both in e-mail letters and throughout the Web site.
* Government Health Site
Centers for Disease Control and Prevention (www.cdc.gov) This Web site is one of most comprehensive and complete sites for health information on the Web put together by this U.S. agency. This Web site is an excellent starting point for finding health information. Start searching by using the section called "Health Topics A - Z." Individual topics can include such things as governmental statistics, abstracts of major research, and contact information for agencies related to the topic of vision. The CDC also includes an excellent children's section, links to state health agencies, and international traveler's health information (http://www.cdc.gov/travel/).
* Medical Search Engine
MEDLINEplus (http://www.nlm.nih.gov/medlineplus/) Medline is one of the largest medical databases in the world. Recently, the National Library of Medicine launched MEDLINEplus as a tool to better help consumers find information. They have a simplified search engine for lay people (the professional indexing guide, while helpful to professionals, is very technical) and hundreds of free publications arranged by health topic. Millions of people use the site each month to search for health articles and news.
* Multimedia Health Site
The Health Library at Stanford Streaming Video Collection (http://www.med.stanford.edu/healthlibrary/videos.html) Stanford has hundreds of lectures, classes and other health related presentations available online through streaming audio and video. Topics in the collection include such areas as stress, women's health, osteoporosis, adult development and sleep disorders.
Conclusion
In 1998, 36 percent of American Internet users went online to search for health or medical information. Steadily those numbers grow as people realize the powerful tool the Web can be for finding information. To make the most out of an online experience, feel open to trying new experiences and exploring the online communities forming around health care. There are many exciting and interactive Web sites that offer quality information. Be a careful consumer; ask as many tough questions about the quality of the material found on a Web site as would be asked if reading other printed material. Use common sense and if in doubt consult with your physician. Good information is health power.
References
- Fries, J.F., Koop, C.E., Soklov, J., Beadle, C.E., and Wright, D. (1998). Beyond health promotion: reducing need and demand for medical care. Health Affairs(17)2.
- Gillespie, G. (1999, July). You've got mail? So do your patients.
- Health Data Management( 7)7, 82-86.
- Hodge, J.G., Gostin, L.O., Jacobson, P.D. (1999, October 20). Legal issues concerning electronic health information: privacy, quality, and liability. JAMA (282) 15, 1466-71.