Staying safe in online patient communities: The Mayo Clinic model

Maybe you've thought about joining an online patient community to get support but felt unsure about how to protect your privacy. Or maybe you've joined but don't feel comfortable because you're worried about misinformation.

It's fair to be concerned. Sharing and searching for information online always comes with risks and benefits. How you weigh those is a process that's unique to you. But getting past your concerns to participate in online conversations with others who "get it" can be rewarding.

A good online community is a space where people with shared experiences can ask and answer questions, give and get support, vent and celebrate. You might find support and solidarity you didn't know you needed from people who know what it's like to live with a health condition.

Mayo Clinic Connect, established in 2011, is an online community providing space for patients or family caregivers — anywhere in the world — to connect with each other. On Connect, you are recognized as an "expert by experience" — someone with knowledge and perspectives to share.

But how does Mayo Clinic keep this online space safe for the people who join to share and learn? Here are the basics on how the Connect community deals with misinformation, misbehavior and safety.

Why and how is Mayo Clinic Connect moderated?

Connect is moderated by Mayo Clinic staff dedicated to the community. Staff moderators monitor all discussions, mostly to make sure that people get connected with someone like them. They keep the community:

  • Safe
  • Supportive
  • Inclusive
  • Useful
  • Respectful

Those staff moderators are supported by volunteer mentors — patients and caregivers with lived experience. Mentors are vetted members selected based on their knowledge, emotional intelligence, compassion, empathy, and commitment to the community and Mayo Clinic values.

Mentors receive training and ongoing coaching. They, in turn, have their own private group where they can ask questions, get support and learn from each other.

How do moderators handle misbehavior or harmful online actions?

Moderators and mentors watch for misleading or incorrect information. Clearly stated policies make it easy for moderators to change — and in some cases remove — posts that aren't allowed on Mayo Clinic Connect.

Though it happens rarely, Connect staff can warn or remove members who violate the guidelines. And bots and spammers are usually thwarted through automated security filters.

What about people giving medical advice to others?

People join online communities not to replace consultations with their medical providers but to connect with other patients. Mayo Clinic Connect makes it clear to members that the advice they get or give on the site isn't a substitute for professional medical advice, diagnosis or treatment.

Connect encourages members to share their experiences rather than give advice. Mentors help model this behavior by using phrases such as "in my experience" or "I know everyone is different, but for me I found it helpful to ... ."

And misinformation? What about medical inaccuracies?

Not every statement made by members on Connect is accurate or evidence based. But by giving people space to express what they understand or perceive to be true, misunderstandings can be corrected.

In this open environment, members, mentors, moderators and — in some cases — providers have the opportunity to call out popular myths. And they can also point people toward reliable health information.

Rather than removing misguided information, this approach gives community members the chance to correct misconceptions and provide balanced, respectful debate. It can be a productive learning and bonding opportunity.

How does Mayo Clinic Connect protect members' privacy?

On Connect, if you don't want to use your real name, you don't have to. A screen name like @sunflower is OK. That means that if you're not ready to talk publicly about your health online, you can share anonymously.

Mayo Clinic Connect may collect some information about how you use Connect. But information posted by members on Connect is not shared or sold to third parties or use to generate funding.

It's all in an effort to make safe space for people experiencing health challenges to learn from and lean on each other. Want to learn more? Search for Mayo Clinic Connect and explore for yourself.

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