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Presenting at Stanford Medicine X

September 21, 2015

I’m excited to be returning to Stanford Medicine X (Sept. 25-27) this year to speak on a panel with Susannah Fox, Pam ResslerWendy Sue Swanson and Jodi Sperber. In our session Privacy: Preventing Harm or Innovation we will examine the nuances of privacy and hopefully inspire people to rethink and reframe privacy wit respect to online communities.

All mainstage talks will be livestreamed. We’ll be on air Saturday, Sept. 26 at 1pm ET (10am PT).

Medx poster

Here are some of the points I hope to cover. But you know how it is. One never knows exactly how the conversation will unfold.

  • For many people, sharing about their health online trumps conventional concerns about privacy. Each person weighs the benefits and risks arriving at their own “privacy calculus”.[1]
  • We need to ask what motivates people to share about their health online. Usually it is because they do not have people who understand how they feel or who share their experience within a reasonable geographic proximity, they cannot access their medical team, and/or they need to tap into a wider collective knowledge – faster.
  • Patients and caregivers who share about their health in online communities told me that they agree with 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.[2]
  • How might we re-imagine privacy in terms of confidentiality, security, anonymity, vulnerability, norms of interaction and respect?
  • Discovering that they are not alone and that they are helping others are the prime motivations that drive people to share about their health in online communities. As members feel they matter within the community – that they can be influenced and influence – they satisfy their own needs as well as meet the community’s needs.[3]
  • 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 might we reward the brave people who share online? Community managers can tell stories about the community and its members – what they have learned, contributed to and advanced in health care and help validate the risks members take when they share the tough stuff online.

Special thanks to everyone who participated in #hcsmca and #hcldr to help shape my thoughts and #FlipThePanel. Here’s a small sample of tweets that helped calibrate my ponderings as I prepare for #medx.

Please join the conversation online using the hashtag #medx.

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