This week’s chat is for anyone who has always wanted to know more about becoming a patient advocate via social media. Many think that it’s difficult to join or follow a tweet chat or that it’s hard to comment about topics that might be too personal. In some ways it CAN be difficult to share such personal stories with people you don’t know. However, you never know when something you share might help others. Also, no one forces you to share anything that you don’t want to share. Even if you’ve never participated in a tweet chat before, it doesn’t take a professional to follow one. If you’ve always wanted to join a chat on Twitter, but you were afraid or didn’t know how, this should be your first chat. You’ll learn some tips and you’ll probably discover that you aren’t alone in your journey. You also just might make a few friends! Read on for more about Thursday’s chat, 8/27, 7 p.m Central. Be sure to check out the links to some excellent articles about chats and other online communities.
by guest host Christina Lizaso
The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.
What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.
I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming…
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