Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn’t have time to dig for excellent links like those. Thanks to Susannah Fox’s Twitter feed.

One of the best social media patient figures I met, long ago, was @AdamsLisa – Lisa Bonchek Adams of LisaBAdams.com. There’s a firestorm today in the SPM member listserv and on social media over a pair of pieces that are in my view incredibly offensive and clueless, utterly missing the point of the value of social media. I find this patently offensive, and apparently there’s more to it than that – writer Emma Keller didn’t tell Lisa she was working on a story, published private emails and DM’s from Lisa without asking, and didn’t even tell her the piece had been published. What the heck??

And yet the headline of her piece questioned Lisa’s ethics in tweeting her own illness!

Here are some initial readings:

Guardian post on Lisa Adams - takedownToday, apparently after this blew up, The Guardian took the unusual step of withdrawing Emma Keller’s post (right). Others are saying it was removed due to issues with the Guardian’s code of conduct … an ethics bust, on a post that questioned the patient’s ethics.

I’ve gotta run – please discuss. Help the clueless understand – what were they missing?

Additions 9:20 pm

As usual, Susannah Fox’s contribution amid the heat is to shed light where she can, with some facts. First, go read these articles. They’ll deepen your understanding of the story and clarify why it feels so wrong.

  • Social Media is a conversation, not a press release: How @nytkeller and @emmagkeller flunk understanding @adamslisa by UNC assistant professor @Zeynep.
    • The headline nails one of the ways that neither Keller knows what they’re talking about: they simply don’t understand how social media works.
    • This article relates that Emma Keller published parts of private communications without permission, having not even said she was working on a story, and then didn’t even tell Lisa the story had been published.
    • “It was an oddly callous piece—but that was not its only fault. Emma Keller admitted that she had conversed with the subject via email and DM on Twitter without telling her that she was doing a story about her, and quoted Lisa Adams’ private direct messages without as much of a notification, let alone a permission. Emma Keller’s piece also greatly misrepresented what was happening with Lisa Adams. // I knew the misrepresentation because I’d been following Lisa Adams and a few other metastatic cancer patients for the last year …”
    • “Good journalists know that—to understand a community, you have to spend time in it and embedded within it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It’s a lively conversation, a community, an interaction with implicit and explicit conversations and channels of signaling, communication and impression…”

Other tweets from Susannah’s timeline shed light on reality:

  • I’m hoping to contribute data to the public conversation about how people share and learn from others’ health experiences. Background first.
  • 45% of U.S. adults live with chronic health conditions – @pewresearch http://pewrsr.ch/1fryV3c 
  • Once online, people living with chronic conditions are more social about health, gathering and sharing information. http://pewrsr.ch/1b2qtib 
  • Once people begin learning from others online about how to cope with their illnesses, they are likely to also share what they know.
  • This is not yet a mainstream activity, but it is real. @pewresearch has gathered the data. I’ve gathered examples. http://pewrsr.ch/1cVRWGP 
  • 19% of internet users living w a chronic condition went online in the past year to find others w same condition http://pewrsr.ch/1eA4umv 
  • Unless you are living with chronic health conditions — or love someone who is — you don’t see that side of the internet.
  • @pimunchers 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions.
  • @pimunchers So even that 19% is lower than you might expect. To those who use online health resources daily, it does seem low.
  • “Breast cancer survivor group is a social movement” by @LizSzabo http://usat.ly/RT2B8z  [from October – part four of USA Today’s series on breast cancer covers the #BCSM twitter chat]
  • Note: Vast majority of patients and caregivers who go online to help each other ALSO consult clinicians like everyone else.
  • But for some the path to health is also found in the advice shared by someone like them. http://pewrsr.ch/1cVRWGP

Added 7 a.m. next day

  • Yesterday afternoon the Times “Public Editor” Margaret Sullivan @Sulliview posted Readers Lash Out About Bill Keller’s Column on a Woman With Cancer. This is a  long, thoughtful piece about the journalistic aspects, for instance:
    • “I don’t make a practice of commenting on whether or not I agree with columnists, or whether or not I like their columns in general or on a particular day. That may have to do with David Brooks on pot-smoking or Maureen Dowd on Chris Christie. That’s pretty clearly not my job as public editor.”In this case, I’ll go so far as to say that there are issues here of tone and sensitivity. For example, when Ms. Adams has made it so abundantly clear in her own work that she objects to the use of fighting metaphors in describing experiences with cancer, it was regrettable to use them throughout a column about her, starting with the first sentence. It suggests that Mr. Keller didn’t make a full effort to understand the point of view of the person he’s writing about on the very big and public stage that is The Times….”
    • Sullivan also notes that reaction to the column has not been universally negative.
  • reaction

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