Cancer epatient Patient Empowerment

An ePatient Firestorm Provoked by Journalists

Screen Shot 2014-01-14 at 2.36.30 PMA pair of journalists, husband and wife, recently published opinion pieces that seem to draw into question the ethics and sensibility of Lisa Adams (@adamslisa) Tweeting and blogging about her life with stage IV breast cancer. The opinion pieces were published on the NY Times Opinion Page and in The Guardian. The two articles have caused a “fury” within the ePatient community, along with members of the Society for Participatory Medicine (SPM). Check out ePatient Dave’s post here. There’s also an incredible piece in The Atlantic by Megan Garber titled “On Live-Tweeting One’s Suffering: Journalists question the ethics of cancer—of fighting it, and of blogging about it.”

Here’s how ePatient Dave sums up the situation on the blog:

“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.” ePatient Dave

Adams and her medical team at Memorial Sloan-Kettering have been aggressively treating her cancer; and Adams has been open on social media talking about her journey. Unfortunately, Bill Keller, whose piece appears in the NY Times, seems somehow threatened by her voice, and assumes that her experience and storytelling somehow are an affront to others who choose a less aggressive path (he gives the example of his father-in-law’s death). This is fascinating. Here’s a quote from Bill Keller’s story:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”

What does Keller want? Should Adams go quietly into the night to avoid raising false hope for other cancer patients? And who is Keller to even suggest how anyone should deal with a terminal illness? I applaud Lisa Adams for telling her story brilliantly. For me, that is enough.

Note: The Guardian has deleted Emma Keller’s post. The explanation on its website: “This post has been removed pending investigation.”

3 comments on “An ePatient Firestorm Provoked by Journalists

  1. So much has been written about Kellergate Dan, the most eloquent from patients themselves. There are many issues to tease out – for one, the ethics, not, as Emma Keller would have it, of cancer patients being public about their disease, but rather the ethics of how journalists write about cancer. My hope is that this firestorm will cause more journalists to be better informed and write with more accuracy and sensitivity next time they write about cancer patients.

  2. Pingback: A Day Dedicated to ePatients | The Healthcare Marketer

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