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 the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.
Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:
T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?
T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?
T3: What are some considerations and cautions when it comes to getting social with your health?
T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?
The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.
For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.
Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat
Further Reading:
- The Nature of Online Communities – #HCLDR (Healthcare Leadership) Blog
- Communicating the experience of illness in the digital age by Susannah Fox
- MedX Panel – Communicating the experience of illness in the digital age (video, notes & tweets)
- Power of twitter chats in in their ability to build community
- How to Be a Twitter Chat Champion via @np_blogexchange
We hope you can join us!
Dee
Co-Founder and Co-Moderator #gyncsm Community
