When voices clash, patients must speak louder

"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:

Terrified I might get cancer, because what if Bill and Emma Keller yell at me.

— Ken Jennings (@KenJennings) January 13, 2014

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. 

Don't lose your Twitter voice

Image courtesy of Tom Fishburne. Learn more here.

It's your voice. Don't let someone else speak for you.

Too many health systems (especially smaller ones) outsource their social media voices, usually to those who don't know their organizations or who can't speak in their institutional voice.

Getting help with strategy and content development is fine. 

But take internal control of your social voice — and especially how you interact with and respond to your patients, community and customers.

Social media is about building relationships and, ultimately, trust and loyalty. That comes with knowing your audience and participating in genuine conversations. Too many organizations fail to engage with their customers — patients and families and public — thereby squandering opportunities to begin a dialogue with someone who is actively reaching out.

So take control of your Twitter account. And your Facebook account. And Pinterest, Google+ and every other new network that is sure to follow.