One of the first things many people do after being diagnosed with a rare disease is search online to find out more about it.
I know that is exactly what I did.
And I wonder if you’ve had the same frustrations:
- Did you find it frustrating that you could not find much information on a rare disease?
- Even if you did find some facts about it, did you question its credibility?
- Alternatively, did you have a difficult time understanding the new information?
Today, the Internet is the go-to medium for sharing medical and health information. It is used even more now than ever before, especially within the last decade. Yet, it can still be difficult to find information and comprehensive knowledge.
It is particularly hard to locate pertinent facts about a rare disease, even after hours of researching.
Even when you find medical information, it is not always easy to distinguish if it is credible or not. Patients as well as family members may not be able to determine if medical or health information is quality information.
So, naturally, researchers conducted a study. Its purpose was to assess and evaluate the quality of information located on the internet about rare diseases. Researchers located 693 websites with content about rare diseases. Only 123 completed a questionnaire that contained questions about the information available on the author’s website.
Survey says: There is a lack of information in general on rare diseases, and the quality of that information is, not surprisingly, low.
Additionally, the study found that support groups provided a large amount of information that is valuable to patients with rare diseases.
That’s why we love our community here on Patient Worthy, and we hope you do, too!
