Communicating the experience of illness in the digital age

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Susannah Fox, and Meredith Gould about the power and pitfalls of people sharing their health experiences online.

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  1. We hope to "flip the panel" by sharing resources and starting the discussion early online. Please join us by commenting here, on our blogs, or on Twitter using the hashtag #medxsm. (Note: I will add new resources to the top of each section. Please let me know if I miss something: susannahrfox at gmail dot com)
  2. If you've never heard of flip teaching, please see:
  3. Details on the panel:
  4. Blog posts by panelists:
  5. Questions discussed during the #hpm tweet chat at 9:00 PM ET/6:00 PM PT on Wednesday, August 20:
    1) Do we have different standards in the use of social media for those at the end of life than for those who are in active treatment for a disease?
    2) Who determines appropriate use of social media in a situation when a family member is doing the posting on social media/networking sites (Facebook, Blogs, Twitter, etc.) and not the patient?
    3) Are there ethical issues that we need to think about? 
  6. Key quote from the post: "Thanks to digital technology, that care and support is now available 24/7 to anyone who is not only willing and able to access online communities of support, but willing to disclosewhat hurts and disturbs at all levels -- body, mind, and spirit...Have online digital technologies in general, and online communities especially, changed the parameters of self-disclosure? I believe so. For the better? I say 'yes' to that as well, although there can be unintended (but not unexpected) consequences of doing so."
  7. Key quote from a comment by Colleen Young: "Let's take this out of the health realm for a moment. When building relationships, on or offline, we don't reveal all - at least not all at once (if ever). The first connection may be made through a common interest like knitting for example.Then it is shared who the knitting is for (a grandchild perhaps), and eventually more intimate details about family relationships are shared, etc., etc. As bits and pieces of ourselves are revealed and commonalities discovered, trust is built and we share more, but not necessarily all."
  8. Questions we discussed during the #hcsmca tweet chat at 1pm Eastern on August 6:
    - How do you decide whether to disclose your health status via social media?
    - What factors prevent you from disclosing your health status via social media?
    - How has social media changed your perception/definition of privacy?
  9. Key quote from the post: "You might think it a challenge to initiate and encourage self-disclosure in online patient and caregiver communities, but I have found it isn’t. People want to share their experience, find others like them to reduce not only their own isolation, but also to reach out to others who may be feeling alone. What takes time and effort is creating an active and welcoming community where people feel safe to disclose their innermost thoughts, opinions, emotions and personal information."
  10. Key quote from a comment by Eve Harris: "When I participate in patient communities my contribution is rarely personal. While I recognize the movement and support authentic peer support, for me it’s a low ROI. You can call it snobbery; call it impatience…I call it prioritizing use of my time and limited mental/emotional bandwidth."
  11. Key quote from a comment by Paul Wicks: "...we need to get to the point where having a GI disorder isn’t embarrassing, where making a choice about your body doesn’t get you vilified or worse, where disclosure of TMI that benefits others is seen not as a weakness or a failing but as a donation to the world, a gift that can never be repaid."
  12. Key quote from the post: "There is no such thing as over-sharing when you are pursuing hope “like it’s an outlaw” (to quote Afternoon Napper). To say otherwise is to deny people the chance to change the way we practice medicine, for the better."
  13. Key quote from a comment by Jim Skinner: "Why is it that every patient has to begin a learning process from scratch without the benefit of the experience of others? Is it really necessary to reinvent the wheel at each diagnosis? When you think about it, we are all standing on the shoulders of thousands of patients who have been through our situation and probably much worse. The problem is the patient never gets any benefit of the experience of others while the doctors do."
  14. Key quote from the post: "Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness."
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