Understanding the Internet: MS and the Web
Reprinted with permission from Melissa Carter-Ozhan, Editorial Supervisor, BioScience Communications*
Using the World Wide Web
The Internet has had a big impact on the daily lives of many people. We use it to access the World Wide Web (“the Web”) for work, entertainment, and increasingly, to find information related to our health. For those living with multiple sclerosis (MS), the Web can provide the information, support, and social connections that can help manage the day-to-day challenges of living with the disease. Caregivers, too, can find useful information that addresses their needs and interests. Information on the Internet is presented on over 100 million Web sites that can be accessed by users. Many of these sites feature more than just text and pictures. Words such as “blogs,” “wikis,” “podcasts,” and “RSS feeds,” are part of a new vocabulary used to describe this electronic landscape. For those unfamiliar with the terrain, we begin with a +primer on some of the current tools available to Internet users.
Just as the Internet can be a valuable and reliable source of information, it can also contain information that is inaccurate, misleading, or just plain dangerous. There are ways to identify the good from the bad, and we’ll give you tips on how to tell the difference. At the end of this article are various organizations that are listed that are good sources of information about healthcare issues and specifically MS. This list is not comprehensive, and you should always discuss the information you find with your healthcare provider.
Of the millions of Web sites on the Internet, many offer information related to health and diseases, including MS. The typical method used to find information on the Web is to use a “search engine” like google.com or yahoo.com. Typing in a keyword or two related to the topic of interest results in a list of related Web sites. A recent search for “multiple sclerosis” on a popular search engine resulted in more than 2 million results! Finding the best the Web offers takes a little knowledge about some of the new tools used to access information. While some of these tools may seem unfamiliar, and perhaps even daunting, for the most part they are easy to use, free, and likely to improve the way you find the information on MS you want and can use.
Although the terms “Internet” and “World Wide Web” are often used synonymously, they are not the same. The Internet refers to a network of computers all linked together; today, people can use their personal computers, and often, their computers at work, to “go on” the Internet. The World Wide Web was created in 1989 and is the most user-friendly part of the Internet. It is the collection of data and information that can be accessed by using specific “Web” addresses, also known as URLs, or Uniform Resource Locators. The Web has changed a lot from its early years, so much so that today it is called the Web 2.0. Once primarily a storage space for read-only information, passively waiting for users to retrieve, today’s Web has tools that make for a very interactive Web experience.
Blogs, wikis, podcasts, and RSS feeds allow information to be exchanged faster and presented in ways that are appealing to a diverse population. Some tools even make the Web portable, allowing users to get the information they need without having to sit down in front of a computer.
Web 2.0 technologies are increasingly becoming part of health-related Web sites, including those that present information for people with MS. Many health organizations and educational programs are adopting them to expand their ways of communicating.
Blogs, short for “Web logs,” are Web sites containing personal diaries. Generally they are designed to give frequent updates, with the most recent entries posted at the top. Indeed, the speed with which new information can be posted on blogs is part of their appeal. They can be started by anyone who obtains the easy-to-use software (free at blogger.com). Most blogs unite people with similar interests into virtual (online) communities; this includes blogs for people with MS. Like chat rooms and message boards, blogs are often personal, with people writing openly about certain topics, such as their daily experiences living with MS, as though they were writing to a friend.
Because blogs are often written from one’s personal perspective, it is important to keep in mind that the information may be based solely on the blogger’s opinions and not necessarily supported by scientific fact. Nevertheless, blogs about MS can be a source of comfort, as they allow people with MS to share their experiences with one another. To find a list of blogs devoted to MS.
A wiki—the Hawaiian word for “fast”—is a collaborative site that allows visitors to edit entries already posted. The most famous wiki is Wikipedia (wikipedia.com), an online encyclopedia that has more than 6 million articles, all of which can be edited by anyone. Medical wikis work the same way, for example, ganfyd.org contains editable entries on MS, as do wikihealth.com and Wikipedia. The idea behind “wikis” is that the quality of information is ensured through the “collective intelligence” of many authors. While wiki entries must include supporting references, their content should be viewed cautiously, as the expertise of contributors can’t always be verified.
Podcasting is a way to distribute audio files, alone or with video files (vodcasts), directly to a subscriber’s computer. Podcasts are like radio or TV shows that can be accessed any time after they are downloaded either onto the computer or a portable device that can play the file, like an MP3 player. Many podcasts are episodes in an ongoing series; users can choose to subscribe to the series and download new episodes as they become available.
With most Web browsers (e.g., Internet Explorer, Firefox, Safari), no special software is required for managing podcasts, but, if needed, programs that download and manage podcast subscriptions can be acquired. One of the more popular podcast managers is iTunes (apple.com/iTunes). Aside from their value as an information source, podcasts can provide community outreach. Many medical journals, hospitals, and educational institutions are offering health-related podcasts, some of which are specific to MS, on their Web sites.
RSS (Really Simple Syndication), created in 1997, is a system that allows users to subscribe to a favorite Web site and receive regular, automatic feeds from it to their computer or portable device. The feeds may be podcasts, blog entries, news headlines, or tables of contents from online magazines or journal publishers. News updates may be delivered many times each day. In essence, RSS can turn the desktop into a personalized, well-organized, late-breaking “newspaper.” Most major news Web sites, for example, offer RSS feeds that you can subscribe to and personalize. Typically, a link or icon on the site’s homepage allows you to subscribe to RSS feeds. Your subscription can be customized to receive only health-related headlines when they are posted. Some sites, such as Medical News Today will allow subscribers to be even more specific, offering feeds for only MS-related news. In order to receive updates from sites with RSS feeds, you need to download RSS “reader” or aggregator software. Newer versions of Web browsers have built-in support for RSS feeds, but, if needed, reader software can be downloaded for free. Options include Newsgator and My Yahoo.
Using the Web as a source of health information is not without its hazards; incorrect or misleading information, bad links, stale news, fraud, and even hoaxes all exist on the Web, so findings must be viewed with a critical eye. When you come across a Web site that looks promising, ask these questions about the site and the information it presents to determine its trustworthiness.
Be sure to share search findings—especially those related to medical treatments—with a doctor or other healthcare professional that can help you determine the legitimacy of the source.
Most requests for health-related information on the Web start at a search engine, such as Google.com or Yahoo.com, but the list of Web sites identified by search engines will vary widely in quality and integrity. This compilation of MS-related Web site titles has been created to make it easier to find Web sites that may be helpful. The VA MS Centers of Excellence, Making Strides, its editorial board, its grant provider, its publisher are listing the names of some MS websites for informational purposes only and are not responsible for these sites or for the accuracy of information they provide. The list is by no means a comprehensive list but it provides a start to various sites related to MS issues.
For more information on MS disease modifying therapies (DMTs) you can visit each pharmaceutical website. Treatment information is also found on most MS websites.
Other websites like Health Talk, Web MD, About.com, and Understanding MS provide additional resources for people wanting another perspective on MS.
Organizations like MS World and This is MS provide online support groups for people and their families with MS.
There are many blogs by people affected by MS. You can search for one by using a search feature on the site called technorati.com
There are a variety of websites that offer podcasts of educational programs about MS. Some of the organizations that offer podcasts include the National MS Society, John Hopkins Medical Center Podcast, University of Maryland Medical Center, and Medical Review. Return to Top
In addition to the variety of information that is available for people with MS many of the websites listed above have sections that focus on issues and concerns for people caring for loved ones with MS. There are websites that are devoted to caregiving issues. Some of these include Caregiver.com, Family Caregiver Alliance, and National Family Caregiver Association. There are a few Blogs that also address this population and they are Caregivingly Yours and MS Caregivers.
*© 2007 BioScience Communications Making Strides Web site www.making-strides.net.
Date posted: June 2008