For many people, sharing about their health in online social networks overrides conventional concerns about privacy. Each person weighs the benefits and risks arriving at their own “privacy calculus.”
Mayo Clinic Connect, established in 2011, is an online community, connecting patients and family caregivers with each other. Community members share experiences, ask questions, find answers, give and get support and exchange vital information. Mayo Clinic values patient and caregiver knowledge and recognizes them as Experts By Experience. As a responsible host of the Connect community, we respect privacy, recognizing the value of open sharing, and provide guidance for members on how to share safely.
In a blog post published in 2018 entitled “Don’t Let These 3 Common Fears Stop You from Creating a Vibrant Patient Community,” I describe the ways we moderate Connect, and measures that are in place to safeguard members against misinformation, bad actors, and inaccuracies.
With online patient support groups expressing renewed concerns about privacy practices in social networks, we’d like you to know some important characteristics of Mayo Clinic Connect and what we do and don’t do with the information you share.
- The community is for all; Mayo and non-Mayo patients, families and caregivers.
- Connect is funded solely by Mayo Clinic.
- Information posted by members on Connect is not shared or sold to third parties or used to generate funding.
- Connect is a public forum so that its members can help as many people as possible.
- Members can choose to remain anonymous and do not have to use their real names; a screen name like @butterfly is okay.
For more information
- Read more about Connect.
- Mayo Clinic Connect Community Guidelines
- Frost J, Vermeulen IE, Beekers N. Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities J Med Internet Res 2014;16(5):e126
- Pereira K. Experts by Experience – What Patient Narratives Tell Us Mayo Clinic Social Media Network. Jan. 2018
- Young C. Don’t Let These 3 Common Fears Stop You from Creating a Vibrant Patient Community Mayo Clinic Social Media Network. Sept. 2018