Shifting the “Privacy Calculus” for the Patients Online

For many people, sharing about their health online overrides conventional concerns about privacy. Each person weighs the benefits and risks arriving at their own “privacy calculus”. Patients and caregivers who share about their health in online communities told me that they agree with Alan Westin’s concept of privacy: The right to privacy is the individual’s ability to determine when, how, and to what extent information can be shared.

How might the hosts of online communities respect privacy, recognizing the value of open sharing, and build trust with the people they set out to connect and help?

Mayo Clinic Connect is such 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 #ExpertsByExperience.

In a previous blog post, I describe the ways we moderate Connect, and measures that are in place to safeguard members against misinformation, bad actors, and inaccuracies, and how we build a thriving online patient community.

With online patient support groups expressing renewed concerns about privacy practices in online community platforms, we’d like you to know some important characteristics of Mayo Clinic Connect and what we do and don’t with the information patients share.   

  • Mayo Clinic Connect was launched in 2011 and continues to thrive today.
  • The community is for all; Mayo and non-Mayo participants.
  • Connect is funded solely by Mayo Clinic.
  • The information posted by patients and caregivers on Connect is not shared or sold to third parties or used to generate funding.
  • Connect is a public forum so that we can help as many people as possible.
  • Members do not have to use their real name; a screen name like @hopeful is okay.

Self disclosure conversations are the precious threads that weave the fabric of a successful online community. As people reveal more about themselves, they make meaningful connections and build circles of trust that help them better self-manage, hack health and forge radical quality improvement pathways.

How do we reward the brave people who share online?

At Mayo Clinic, we join forces with Connect members to improve health care, teach clinicians, create patient education and advance science. We invite patients to tell their stories and to share about the community – what they have learned, contributed to and advanced in health. Involving community members in projects helps validate the risks members take when they share the tough stuff online.

Join me Thursday, January 17, 1pm CT for a free webinar and discover How Mayo Clinic’s Patient Community Changes Health Care and Advances Science.

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How can online health communities respect patient privacy?
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Understanding how patients weigh privacy against the need to share their stories online:


Based on Westin’s definition, I don't believe privacy exists anymore.

For example, does a patient, who is acutely ill, and wants to see a physician, have the right to decline an EHR? No.

Does this patient have the right to decide which third party vendors are allowed to "mine" her/his data? Doubtful.

If this 3rd part vendor, was, say Amazon, does she/he have the right to decline her/his data from Amazon Prime being combined with her/his data from her/his EHR? It's unclear.

Patients should be less worried about HIPPA – the inadvertent release – and more worried about the data they themselves have chosen to give freely – everyday, every time they engage with any digital system.

Once an individual engages with a healthcare system, they have lost any real control of their data.

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