"Shout it, shout it, shout it out loud. Everybody shout it now!"
That's what KISS told us in its 1976 hit song.
It's also what we need to be telling our patients. Now!
We are a week into a furor over how much is "too much" when it comes to sharing online. At issue are columns from two high-profile journalists questioning whether blogger Lisa Bonchek Adams, who has battled cancer for seven years, is oversharing her health and medical information.
Adams has chronicled her disease and treatment in a most deliberate, eloquent and passionate manner. Her writings have no doubt comforted and inspired many cancer patients. She has worked with Memorial Sloan-Kettering Cancer Center in New York City for treatment and research.
The two journalists — Bill Keller, the former Executive Editor of the New York Times and his wife, Emma Gilbey Keller, a writer with The Guardian — wrote pieces four days apart that raised concerns about what and how much Adams shared. Bill Keller's piece appeared in the Times ("Heroic Measures," January 12, 2014) and Emma Keller's in The Guardian ("Forget funeral selfies. What are the ethics of tweeting a terminal illness?" January 8, 2014).
The Internet erupted, in blog posts, messages and tweets. Even Jeopardy grandmaster Ken Jennings weighed in:
What's at issue here is self expression and giving voice to patients who previously had been kept mute.
I'm concerned mostly with the sensational headline in The Guardian: "What are the ethics of tweeting a terminal illness?"
Ethics? The ethics are simple: Tell your story. Period.
Because it's your story and you have the right to tell it any way you want, in any channel you want. Journalists who already have the power and prestige of mega-media nameplates — the Times and Guardian, in this case — already do that.
Now it's time for patients to speak up. And, if this week's uproar has been any indication, there's a whole World Wide Web of support ready to listen.
There's plenty more already written about this. Here are a few good reads:
- BBC News Echo Chambers.
- New York Times Public Editor's Journal.
- The Guardian's Editor on why he removed Emma Keller's piece.
- The Healthcare Marketer.