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Expert Review: Are you an active participant or a lurker?

Online health communities, like, appeal to a wide range of individuals.

Some enjoy posting information, asking and answering questions, posting information on Facebook, and completing surveys. Others prefer to be a bit more anonymous, reading posted material but rarely adding to the site.

Dr. van Uden-Kraan and colleagues published an interesting article in the Journal of Medical Internet Research in which they compared benefits from online support groups between those who were active group participants who posted information and individuals who simply read the information without contributing. They called this latter group “lurkers.”

As you’d expect, the active group members received great benefit from the site, but so did the lurkers. Both groups felt they learned good information, were better informed and more confident in their relationship with their health care providers, felt more optimistic about being able to control symptoms, and developed improved self-esteem. Active participants were generally more satisfied and developed a better sense of getting recognition for their symptoms and becoming connected, but lurkers benefitted too.

Posting information on a website is a great way to connect with others, share information, and get your specific questions addressed. The great news, though, is that you’ll benefit from visiting sites like, even if you prefer to gather information without adding to it. So for you active participants out there — keep up the great work. Your contributions really help make online websites more valuable. And for you lurkers, know that you’re also benefitting from gathering information and once you feel comfortable posting, you’ll feel even more empowered and connected.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Jane Smith Was Rigby
    7 years ago

    What a rubbish article!

    7 years ago

    Hi Jane – Do you disagree with the study results assessing benefits of online communities? If so, we’d love to hear your thoughts!

  • Charles Andrew Lininger
    7 years ago

    In your bio you highlight the role of pets. One of the migraine patients I have worked with had a truly unique prodrome to her H/A–she know she was going to have a migraine when her cat vomited.

  • Val Milo
    7 years ago

    I’m pretty much a lurker. I feel that this site has helped me greatly in the way that I no longer feel that I’m alone in the world with a lot of these symptoms! I was amazed to find that other people have these weird migraine symptoms like mine!

  • cmoore09
    7 years ago

    The only reason why I’m a “lurker” is because I don’t want my facebook friends to see what I’m posting…

  • Wes Isah Gaiman-Marlor
    7 years ago

    I have benefited greatly from sites like, it makes me feel less isolated and helps ease the stigma of the disease. Also, sharing the info I find with friends and loved ones helps them relate to me and better understand the disease and its effects on my life. Thank you I still have a long road ahead of me, but knowing that this site is around will help, I’m sure.

    7 years ago

    You’re welcome and we’re happy to help! Thanks for your post 🙂

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