Telehealth and the Internet

by Judith Maginnis Kuster - Mankato State University (kuster@mnsu.edu).

"I am an SLP who has recently started seeing a child with Angelman's Syndrome (AS). I can't find anything regarding more recent than 1984 on AS and communication intervention....I would appreciate of any information."

One aspect of telehealth is using telecommunication technology to help you find what you need to know when you need to know it. Information on the Internet can lead to better health care delivery decisions as well as link you with other professionals. That's why access to the Internet is so vital -- it doesn't discriminate between rich and poor, urban or rural. But it is necessary to know how to navigate through lots of information to find exactly what you require. NOTE: Although there hasn't been a legal test case yet, those who have a web site should carry a disclaimer -- you simply don't know how the information will be used and this relieves you of liability.

With that said, people frequently ask me to find data or information on the Internet. The Internet must be treated as any other information resource. You must evaluate the purpose of the resource, who created it, whether there's been a review process, and how current it is. Answering the above AS request will illustrate several Internet search strategies and show how the Internet enhances our professions by providing quick access to valuable materials.

A good place to begin is the Argus Clearinghouse, a repository of Internet Guides , including Diseases, Disorders and Related Topics. Here were listed four relevant links including, Angelman's Syndrome: A Parent Guide

Yahoo, a huge searchable index of Internet resources produced six matches including Angels Among Us.

There are several useful search engines on the Internet including Excite, HotBot, Infoseek, Lycos and Open Text. Each has different strengths and to use them effectively, you should learn the advanced search strategies most have available. Looking for AS, I used Altavista, which searches the full text of the Web and Usenet articles. When entering the term "Angelman Syndrome" (with quotation marks which refines the search) Altavista brought back 300 matches. With so many matches, a meta-search engine like DogPile or Inference may have been better options. Scanning the first page on Altavista, which is chancy since it does not necessarily provide the best resources first, I found a mailing list for AS with 176 subscribers. To join, email to majordomo@morningstar.com with the following message in the body subscribe angelman. Other places to check for mailing lists are Kuster's List of Lists and LISZT

Any search should not be limited to the major search engines. The Internet contains thousands of online databases which also need to be explored. Internets, the Web's largest collection of links to online databases, is a place to search for databases such as the following.

Additional reference information can also be found in online abstracts of journals and books.

Although you may never hear the term "Angelman's Syndrome" again, I hope the suggested search strategies will help you find what you need to know about Cri-du-Chat, Riley-Day, Asperger's, Huntington's, Prader-Willi, Rett, Fragile-X, Landau-Kleffner, Creutzfeldt-Jakob, Apert and a host of other syndromes and diseases.


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The above information is from:
Kuster, JM, Telehealth and the Internet, ASHA , Fall 1997, p. 55