Tuesday, January 21, 2014

Keller v. cancer blogs: The communications questions

By now, you've not only heard about Bill Keller's op-ed in the New York Times decrying the "heroic measures" involved in the cancer treatment of Lisa Bonchek Adams, you've read some of the many well-reasoned critiques of the former Times editor's piece. And there were plenty of them, with some of the best on the Knight Science Journalism Tracker, on Medium, on Wired, on Mediabistro's 10,000 Words, and on NPR's Monkey See blog. I knew this piece was problematic because I heard about it from journalists first.

Writing in the NPR blog, Linda Holmes gets closest to my first reaction: The column is yet another example of Bill Keller's obvious discomfort with social media. Many suggest it was unconscious on his part; I'm not convinced. Holmes analyzes it with his language:
Keller's writing about Adams is full of little code words that downplay the significance of her writing, her readers and her community, undoubtedly unconsciously. She has "blogged and tweeted," rather than "she has written." Her audience is "rapt," rather than appreciative or respectful. Her criticisms of elements of the breast-cancer lobby are "potshots." She is not an advocate for Sloan-Kettering, where she's being treated, but a "proselytizer." She "insists she is not dying," a construct that implies she is dying, and he knows it, but she won't admit it. She is "bedridden," rather than hospitalized. She doesn't type but "pecks." She is living "onstage." The expert he consulted has "perused" Adams' blog, a wiggly term that could mean "read for a while," but given the bad information that made it into the piece, might also mean "skim with skepticism." This continues in the statement Keller gave to Sullivan. He says he's received negative responses on Twitter, which "encourages reflexes rather than reflection." Those who come to the Times and comment are "thoughtful and valuable," because newspaper comment sections provide so much "space for nuance."
This, from the newspaper that decided to cherry-pick which articles permit comments and which don't, due to the harsh sentiments expressed in many Times comments threads. In recent years, I've been wincing when I read any comment Keller makes on social media, because it's clear he doesn't get it and sees it as a threat to his profession. His disdain is reflected in the sloppy reporting and overblown adjectives, as well as the diminutives he uses to describe tweets and blog posts.

Many bloggers, journalists and commenters have listed well the questions Keller never asked in this long string of assumptions, so I won't repeat them. But from a communicator's point of view, there are a few more to include. Keller writes that Memorial Sloan-Kettering "has embraced her as a research subject and proselytizer for the institution." Any health communicator (and surely any health journalist) knows it's not up to the cancer center to decide when, whether and how a patient like Adams blogs or tweets about her illness, treatment, participation in a study or recovery--the health privacy law says it's the patient who makes that call. Presuming Keller still supports freedom of speech, what's the problem?

Ditto her fundraising. Keller snidely observes "she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. 'We love it!' the hospital tweeted last week about the Lisa Adams phenomenon. 'An important contribution to cancer patients, families, and clinicians! :)'." Apparently, Sloan-Kettering should neither be pleased nor supportive about patient efforts to blog, raise money and donate. Maybe he thought the cancer center should suppress her writing, or that they forced her to raise funds. (Good luck with that, as any cancer development officer can attest.) Keller's wife had cancer, but perhaps neither of them noticed that many people working at cancer centers have been touched by cancer in their personal lives, as well as their work. The idea that Sloan-Kettering is pulling strings somehow is offensive to the center and its staff and to Adams.

Unfortunately, hospitals are lagging behind in using blogs as a communications tool, whether the blog comes from the patients or the hospital itself -- and Keller's column is unlikely to encourage those on the fence. As I noted in a presentation to the National Cancer Institute Public Affairs and Marketing Network in 2012, consumers are reporting that social tools including blogs have an influence on their decisions about where to seek care. In fact, consumers report going to blogs as often as they go to the hospitals' websites for information. Getting information and perspective from other patients is widely recognized as an effective way to gain education and support, and blogs democratize that process. Should a cancer center turn away from a tactic that so many patients and potential patients consult for advice? I think not.

I'd urge cancer communicators -- those on staff at hospitals, and those publishing independently -- to see this as an opportunity. If people as well-educated and highly placed as a former New York Times editor and his wife (who also wrote about Adams in this way) can be so ill-informed, clearly, communicators have much more work to be doing. I hope cancer centers and cancer patients will use this as a fulcrum to do their own blog posts and op-eds to bust the myths that Keller scattered so far and wide.

(Creative Commons licensed photo from pntphoto's Flickr photostream)

1 comment:

Stacy said...

Thanks for this. A distinct point of view, as usual, especially as pertains to the chasm that can exist between old-school and new media.