Presenting at Stanford Medicine X
I’m excited to be returning to Stanford Medicine X (Sept. 25-27) this year to speak on a panel with Susannah Fox, Pam Ressler, Wendy 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).
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”.
- 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.
- 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.
- 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.
*waves* from the UK. I’m a LTC patient with 8 specialists at 5 hospitals who barely speak to each other. Privacy endangers me. #hcsmca
— Beta-betic (@betabetic) July 15, 2015
T2 The possibility of my information doing something positive for others is part of my decision to share. #hcsmca
— Annette McKinnon (@anetto) July 15, 2015
Privacy isn’t just about concealing things. It’s about self–possession, autonomy, and integrity. #hcsmca
— Marie Ennis-O’Connor (@JBBC) July 15, 2015
T3 Opportunities: Discover more about self, about self in relation to others. Reduce isolation and cure “terminal uniqueness.” #hcldr
— MeredithGould (@MeredithGould) August 26, 2015
— P. F. Anderson (@pfanderson) August 26, 2015
Please join the conversation online using the hashtag #medx.
- Privacy: Preventing Harm or Innovation
- Unpacking Privacy
- Chat Summary 228: What’s Your Relationship with Privacy
- What’s your relationship with privacy? Um, it’s complicated.
-  Frost J, Vermeulen IE, Beekers N. Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities. J Med Internet Res 2014;16(5):e126
-  Westin AF. Privacy and freedom. Washington and Lee Law Review 1968;25(1):166.
-  McMillan DW, Chavis DM. Sense of community: A definition and theory. Journal of Community Psychology 1986;14:6-23.