Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa)

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.
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24 Responses to “Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa)”

  1. Thanks for the heads up dave..

    without knowing any of the details yet – there is often when a team or community or culture forms there are point where they form. then ‘storm” before they “norm”

    it is okay but difficult to set norms of a culture or a community but to be expected. Hopefully this will move everyone forward.

    (heck Dave and Regina and ONC all know I love them but often disagree with them for example does change happen at the individual or systems levels – me thinks both -but always respecting privacy and confidences)

  2. bev M.D. says:

    Well, I’m gonna go out on a limb here and say I didn’t think his piece was so appalling. This attitude toward cancer as a fierce battle is not shared by every patient. I felt like Mr. Keller was trying to say there is no shame in NOT battling so fiercely if you choose not to. (The fact of the individual choice is the key). The telling quote for me was this one:

    “Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.”

    Perhaps my attitude is colored by being an M.D.; as there is some evidence that, as patients, we do not always battle so hard if the prognosis is grim, knowing the severe battle wounds which ensue.

    The bottom line for me is: no one should judge or tell a cancer patient how they should conduct their own disease. I felt that Mr. Keller was simply point out there was another alternative. Yes, one may quibble with the tactfulness of individual sentences, but I didn’t think the theme was appalling.

    Now, let the slings and arrows begin. (:

    • Susannah Fox says:

      Hi Bev,

      No slings or arrows here. Mr. Keller has a good point to make. It got lost in the many factual errors he made, which you can read about in Zeynep Tufekci’s piece. A quote:

      “If the point one wants to make is that once “nothing more can be done to prolong life,” it is better to die without a cascade of expensive, intrusive measures that do little to prolong life yet produce an awful quality of life racked by pain, which seems to be Bill Keller’s issue, one can make that point. It’s a perfectly valid point, and one Lisa Adams might agree or disagree with—except that’s not why she’s at the hospital. It has nothing to do with her present stay at the hospital.”

      As Gilles writes below, “anything else is secondary.”

    • Katie says:

      I’m in total agreement with you Bev. As an old time RN who’s spent much time caring for cancer patients – it’s all in ones perspective. I also happen to be a cancer patient myself – in remission – and I completely understood the journalists viewpoint. Perhaps he could have softened his approach a bit (I haven’t read his wife’s piece)but he’s simply pointing out that not everyone is able nor wants to approach their disease with a battle mentality. I’m still trying to figure out what I’m doing beyond questioning every word out of my doctors mouth! I’m not about to go online and ask the world how to treat my cancer! But others are more comfortable with putting their personal self out there.

      • e-Patient Dave says:

        Bev and Katie, your comments that “This attitude toward cancer as a fierce battle is not shared by every patient” strongly suggests that you haven’t read the numerous posts (nor Lisa’s own words) that she does NOT subscribe to the battle mentality, and has said so repeatedly over the years.

        Have you read that?

        That’s part of what makes this whole thing so weird – and reprehensible, journalistically. And WEIRD. What triggered these journalists to hallucinate like this?

        I’m not disagreeing with what you said, except that it’s not what SHE said.

        (Not to mention the stuff about how Emma had a private conversation, not telling Lisa it was for a story, and not only published it but didn’t tell her. How weird is that?? What’s going on??)

        (And not to mention that Emma wrote about how she couldn’t stop herself from continuing to look at this stuff that she objected to. What??? As a couple of commenters said, one of the most basic truths about social media is that while people blather, nobody has to look.)

        Thoughts?

        • Susannah Fox says:

          There have been so many essays written about this story, I’ve lost track, but if you’re only going to read one to try to understand the deep weirdness of why these two columnists blindsided Lisa Adams and what they wrote was so deeply wrong, start here:

          http://www.huffingtonpost.com/lacy-crawford/what-the-kellers-forgot-to-say-about-lisa-adams-and-cancer_b_4590941.html

        • e-Patient Dave says:

          Wow, Susannah. Thanks for Lacy Crawford’s post a week ago.

        • Katie says:

          Dearest e-Patient Dave – I believe I stated what I had and had not read in my post – Did YOU read that? Just because someone states they don’t “subscribe to the battle mentality” doesn’t mean their language or in this case, their social messages don’t reflect that exact approach. Anything anyone posts on social media is up for commentary and interpretation and sometimes that doesn’t mesh with what the poster intended. It is what it is and I say this from professional AND personal experience. You are free to disagree – thats the beauty of the net.

        • Katie, you’re right I guess – I didn’t read carefully enough what you (and Bev) said. Lately I’ve been trying to do way too much for my actual capacity, and I’ve ended up skimming sometimes. It’s a problem … I get anxious when I don’t post (because I don’t feel I’ve had time to think it all out), and sometimes when I do, I’ve indeed not thought it all out, including dealing with the comment stream, which is so important.

          Thanks for pointing it out charitably!

  3. bev M.D. says:

    I will add, however, that I think his timing was very bad. Not what someone in her condition needs to be reading.

  4. Tonight in the main body of the post I added substantially more information, which I lacked in today’s post. Here’s a start.

    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.
      • 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…”

    See also, in the updated post, many statistics Susannah posted today, to assist reporters and others who want to understand the reality of e-patients, social media, and peer-to-peer healthcare.

  5. Susannah Fox says:

    Thanks, Dave, for the shout-out and for posting the links to both the original articles and some of the (many) analyses and critiques. I urge anyone who’d like to comment to scan them first.

    In 2011, when I first measured the peer-to-peer health care phenomenon, I identified a series of roadblocks and opportunities on the path to wider adoption. One roadblock is lower internet access among people living with chronic conditions. One opportunity is mainstream press coverage. Note that I’m not saying that I am directing traffic one way or another — I’m shining a light on the map.

    The Pew Research Center, where I work, has continued to add to the pile of data that shows that people turn to each other online when they need help. My tweets today attempted to inject some of our recent data into the public conversation.

    But based on the fact that the Guardian and the New York Times printed these columns, it is clear that the idea that a patient can educate her peers is still far from mainstream and can even be an object of scorn.

    For those who believe the right way to go is to share, to learn from patients and caregivers, there is much work to be done to move it along the “crazy, crazy, crazy, obvious” scale.

  6. The premise of both columns is wrong! That’s unacceptable, particularly coming from a person who was editor of the New York Times. Because the premise is wrong, it falls straight into the category of “The News Unfit To Print”.

    The fact that both Kellers have not done their research and do not understand the significant shift taking place about palliative care makes them terrible journalists.

    Anyone using the Internet can find a number of scientific articles demonstrating the value of palliative care as therapy to help people live sometimes significantly longer, by simply removing the terrible effects pain can have on survival. Modern oncology guidelines are clear about it. Columnists should demonstrate humility and write discerning pieces about palliative care, not personal attacks, based on their own mistaken understanding of a specific patient treatments.

    Anything else is secondary. Bad journalists with bad ethics and obviously a personal ax to grind due to a family member untimely death make for very bad journalistic pieces. The New York Times must issue an apology for publishing such junk.

  7. Duncan Cross says:

    My sense is that this is not so much about social media as it is who controls the narrative with respect to cancer. For a long time, that narrative has been well established, and is touchstone for how we as a society understand and talk about the disease (esp. ‘awareness’ campaigns). Lisa Adams — a nobody — challenges that narrative, and the Kellers — established journalists, the people we trust to craft our narratives — have responded to defend it. If this were fifty years ago, the Kellers would be writing columns about how it’s rude to even say the word ‘cancer’. I have lots more to say on the subject here: http://duncancross.net/2014/01/what-the-adams-keller-beef-is-about/

    • > not so much about social media as it is who controls the narrative with respect to cancer.

      I dunno, perhaps that’s what triggered cancer-beater Emma to latch onto this.

      Seems to me that the biggest story (aside from ambushing and insulting a patient) is the journalistics WEIRD behavior. If these weren’t career journalists I’d agree that this is mainly about who controls the narrative; in my own case 6 years ago that was a big issue. But adding the career journo angle on top of it is just weird, weird, weird.

      AND the ambush.

  8. e-Patient Dave says:

    Another important (IMO) post from the BC patient side of the wall, by @Lanisia, tweeted today by @Xeni:

    On cancer PTSD and the Double-Kellering of Lisa Adams.

    Lani writes of her own experience being confronted unexpectedly – after recovery – by a woman having a recurrence, and how vividly it brought her back to her own state and its fears. Then, later: (emphasis added)

    Nowhere in the article does Keller talk about her own 40 day brush with cancer, even though she wrote about it publicly, also in the Guardian. This, to me, was the screaming subtext for the combined fascination and horror she expressed about Lisa’s writing.

    In the earlier piece on her own cancer, she ended by talking about a post-treatment scare, saying:

    My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable.
    The trauma has been considerable.

    Yes, I am sure it has. Why does she not connect that insight to her own self-described obsession with Lisa’s experiences? That’s not voyeurism: that’s having some PTSD to work through.

    Much to think about. Great piece, with a different perspective.

  9. There has been a nagging question in my mind since I first read Emma Keller’s article. Why so personal? I only vaguely registered that Emma Keller has had her own brush with breast cancer after which she wrote of it “My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal,”
    Now I find that statement very interesting, for if Keller had managed to put it behind her as completely as she set out to do, why would she be taking such a personal interest in how many times Lisa Adams has tweeted about her experience?

    Once cancer has touched our lives nothing will ever be the same. Life is uncertain for all of us, but those of us with a cancer diagnosis have a heightened awareness of that uncertainty. Cancer lays bare your vulnerability and underlines the uncertainty of life. Could it be that this is the nub of what makes Keller so uncomfortable? She writes of being uneasy with her voyeuristic following of Lisa’s tweets, but again, why so interested, if cancer is in the past for her?

    Perhaps Lisa Adams is for the Kellers a too public reminder of a private fear? A fear which maybe so hidden it can never be publicly acknowledged. Is that the real reason why there must be boundaries put on what she is allowed to say as Emma Keller infers in her article.

    Somewhere nestled among the inaccurate reporting, the snide commentary, and crass insensitivity of the Kellers there exists the potential for an open and honest debate about society’s attitudes to how we live and die today – but it won’t come from journalists like them. It will emerge as so much of the best writing I read these days from the heart of the patient community and those that passionately support them.

    • Yes, Marie, the whole thing has struck me odd, and while we can’t read minds, I wouldn’t be surprised if @Lanisia put her finger on it. Right on the sore spot.

      I feel such pain for people stuck in such trauma. I don’t know any technical details about PTSD but a relative’s spouse came out of World War II with it and it’s sad.

  10. Susannah Fox says:

    Hi all,

    I wrote a bit more about this from a research perspective if you want to check it out:

    http://www.pewresearch.org/fact-tank/2014/01/15/the-social-life-of-health-information/

  11. I hadn’t read Lani’s post when I wrote my comment, but we are certainly of one mind on this. However, I don’t want to be accused of straying into Keller territory, making assumptions based on someone after only a cursory reading of what they have written, so I will generalize my next comments. Many cancer patients struggle to put cancer behind them after their treatment end, and for some the trauma they experienced does fit the model of PTSD. There have been some studies done on this – I list two below.

    Breast Cancer as a trauma, 2007. http://link.springer.com/article/10.1007/s10880-007-9083-6

    Frequency and correlates of posttraumatic-stress-disorder-like symptoms after treatment for breast cancer. 1995 – http://psycnet.apa.org/journals/ccp/66/3/586/

    Unfortunately they are behind a pay-wall, but I have featured a guest post on the topic of cancer and PTSD on my blog for those who might be interested.

    http://journeyingbeyondbreastcancer.com/2013/04/23/driving-the-cancer-bus-cancer-and-ptsd/

    Sometimes there can be a code of silence surrounding the aftermath of cancer. If one good thing can come out of Kellergate it is that we will have more open discussions on the realities of living and dying with the disease.

  12. Here’s SPM member and über-advocate Trisha Torrey’s post. Don’t Like It? Then Don’t Read It. Shame on Those Kellers. She cites her own very painful experience last year with shingles, and how she invited others to share their experience. Then, boom:

    Many people find comfort and peace in sharing, thinking “I had to suffer. Maybe my sharing will help others suffer less.” The entire reason I do the work I do is based on that premise. I call it proactive survivorship and the concept is beginning to gain some ground in larger thinking about disease and even death.

    For that reason, I support and applaud others who do the same thing – who proactively reach out to share their real experiences in hopes someone else will benefit. For many, especially those in very dire, perhaps terminal circumstances, it is the one aspect of life that provides comfort or peace – and they deserve all the support and understanding, comfort and peace, they can get.

    That’s a fraction of what she wrote – go read it. She speaks from experience.

  13. What if, at the end, Emma Keller’s unethical, vitriolic opinion piece was a disguised call for help from someone who found herself suffering from uncontrollable and rising anxiety, fed daily by Lisa Adams remarkably honest and powerful internet writings?

    That’s my current take and I just wrote about it:

    A Perfect Storm In The DCIS Sea Of Uncertainty: Kellergate

    Let me know what you think of it.

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