Evaluating Internet Information: A Guide for Cysters

November 13, 2011

Before I was diagnosed, I knew I had a problem with my hormones. I didn't have a name for it, but I knew the hairiness on my neck, the lack of menstruation, and my thinning hair had to be related.

Before I was diagnosed, I knew I had a problem with my hormones. I didn't have a name for it, but I knew the hairiness on my neck, the lack of menstruation, and my thinning hair had to be related. Then, in 1998, I found a name for what I had in magazine-it was Polycystic Ovarian Syndrome (PCOS). I was overjoyed that I had name and could do some research on PCOS, but overwhelmed when I started to read all the information about PCOS. Everyone's story was similar but, somewhat different, than my own. How could I figure out what was good information and what wasn't? I took my research skills I had gained as a writer and applied them to the information I found.

The Internet makes research easy. You can find all kinds of sites about any medical problem that exists, but the question quickly becomes how to handle all the information and MISinformation that can exist. How do you decide that a resource is an excellent resource for PCOS?

The first PCOS information source women often find are stories in the media. Women read the article by accident, like I did, or they happen to see a piece on a news program. Media stories often combine the other two types of resources-professionals who treat PCOS patients and the women who have PCOS - and are written at a level that the general public can understand.
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A well-rounded media piece will cite information from the professionals (along with the medical professional's credentials) and then give examples of how particular aspects of PCOS have affected the women being interviewed. By the time you have finished the article, you should have a sense of what kinds of impacts PCOS might have in your life and have an idea where you can go for additional help.

Another primary source of information is personal, or anecdotal, stories about PCOS. Some women who have PCOS and write about it, have had formal medical training, but most do not. The women write about their personal experiences so that others don't go through what they did when trying to get a PCOS diagnosis. Their experiences may provide insight on how to handle a particular aspect of PCOS (such as insulin resistance). Many web sites by women will have links to other sites by women, the media and medical professionals, or support organizations. But the most important function these anecdotal sites serve is to validate the fact that women with PCOS are not alone and there are other people out there that have PCOS just like you.

If you've consumed all the anecdotal and media sites, the next logical place is medically-related sites, such as doctor web sites or support associations, and sites for journal or research articles. The list of questions that follows will help to determine how valuable an article may be for our purposes. Does the medical professional cite numerous outside sources? Is he or she someone who's name you have run across in your other reading about PCOS? Is he or she a professional member of any related support associations? Is the information reviewed by a board of peers, or in the case of associations, are articles reviewed by a medical or editorial advisory board? Does the site follow the HON code of Principles? The HON Code requires that information be reviewed for medical accuracy.

Collecting and assessing information about PCOS (or any medical condition) and its treatments can be scary, especially since you may have some or all of the symptoms. But the benefits of being able to better communicate with your physician about your medical condition and its associated conditions will make your research worth it.