Privacy: Preventing Harm or Innovation

Key - nikcnameBlog post by Pam Ressler, Jodi Sperber, Wendy Sue Swanson and Colleen Young

In health, do our assumptions and experience regarding privacy prevent harm or impede innovation? This is what we will address at Stanford Medicine X in September during our panel discussion with Susannah Fox, Pam Ressler, Wendy Sue Swanson, Jodi Sperber and Colleen Young. But first, we’re flipping the panel to jump start the conversation, collecting and sharing resources (such as this Flipboard collection), and most importantly gathering knowledge from our communities like #hcsmca and #hcldr.

In July, we asked #hcsmca-ers how they define privacy, in particular on social media and the information we choose to share. Using the term “privacy calculus,” we queried how people calculate the benefit vs. risk when sharing health information online. As anticipated, the #hcsmca community had a lot of wisdom to share. (See the #hcsmca chat summary.)

Now we’d like to delve further with #hcldr.

The Merriam Webster dictionary defines privacy as “the state of being alone: the state of being away from other people: the state of being away from public attention.” Yet as Pam unpacks privacy she’s beginning to think the word privacy does not fully address the issue we are examining in the context of social media and online communities. Does the definition need to be revisited to meet a 21st century standard? Similarly, if we are engaging in online communities, can or should we expect privacy?

In the post, What’s Your Relationship with Privacy…Um it’s Complicated, Jodi underlined that when we use the term privacy in this context, we are talking less about keeping something secret and more about the control of information flow. Obviously, when we share on the social web, we cannot expect confidentiality. And for many, posting on social platforms is done with the hope that it will be seen by a wider audience. As discussed at last year’s MedX panel Communicating the Experience of Illness in a Digital Age, community managers encourage self-disclosure, while at the same time ensure that when people disclose personal information they receive supportive feedback.

For many, finding support and making connections are the hallmark benefits of sharing health information online. These benefits often trump conventional concerns about privacy in health, and give people the confidence and passion to pioneer a safer and more active social web.

On Tuesday, August 25, 2015, at 8:30 PM ET (for your local time click here), we’d like to continue the conversation and ask #hcldr.

  • T1: Let’s start with word association. What are 3 words that come to mind when you think about privacy and social media?
  • T2: When we engage in online communities can or should we expect privacy?
  • T3: What are the opportunities and pitfalls of openness online?
  • T4: How might we lead a more connected future in healthcare and still take into account privacy considerations raised tonight?

Image Credit

Key – Nikcname



  1. Reblogged this on HealthcareVistas – by Joseph Babaian and commented:

    Great privacy talk on #hcldr this week – please take a look at the excellent blog and do drop in on Tue, 830p E for a great chat – you’ll be glad you did.

  2. Reblogged this on Colleen Young and commented:
    On August 25, Pam Ressler, Jodi Sperber and I were invited to flip our #MedX panel with #HCLDR. This is the blog post we wrote to set the stage for the chat. The resulting transcript is a treasure trove of knowledge, opinion and thought leadership.

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