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. 

Discovering your verse

Apple's latest TV ad lays down a challenge — "what will your verse be?"

It continues online with a still-developing microsite that explores how iPad Air is being used to help people scratch their itches — from ocean divers and mountaineers to Bollywood producers to the NHL's Los Angeles Kings. 

Let's challenge ourselves to rewrite how we connect with our patients. Let's make their voices the loudest.

So, what will your verse be? Sounds like a challenge we can all accept.

We're humbled and inspired by what people do with iPad. So we set out to capture some of their stories. What will your verse be? http://www.apple.com/your-verse

$25,000, well spent

Film director Casey Neistat was offered $25,000 to shoot a trailer for The Secret Life of Walter Mitty.

Instead, he convinced the studio to do this.

help the children affected by typhoon Haiyan by giving to Unicef http://tinyurl.com/lt32ruk https://www.instagram.com/caseyneistat https://www.twitter.com/CaseyNeistat https://www.facebook.com/cneistat no crew traveled with us, it was just Oscar and me. we filmed this ourselves, with a tripod, using my personal cameras.

Source: The Hollywood Reporter

A pledge between doctors and patients

Patients are asked to sign a lot of papers. 

But there is an especially important document handed to patients about to undergo lung surgery at Baystate Heath Center in Springfield, Mass. — it's the Caregiver/Patient Pledge.

The pledge begins with:

We are committed to providing the care steps necessary to ensure the highest quality care before, during and after your lung operation. 

Medical research has shown that the stronger the partnership between you and your caregivers, the better your results will be.

Your active participation is one of the most important parts of this program.

“Our patients really liked the idea of having to sign the pledge, knowing they had their own job to do in getting back to health,” said Rose B. Ganim, MD, FACS, FCCP, Baystate thoracic surgeon. "And they liked seeing on paper that it wasn’t a bother to talk to their doctor about their worries and concerns."

The pledge was developed as part of Baystate's participation in the ProvenCare collaborative started by Geisinger Health System. ProvenCare has been shown to improve quality and lower costs and Geisinger has shared the best practice model with others, like Baystate.

It has long been known that patients who are active in their own care make the best patients and have the best outcomes. Putting these expectations in the form of a pledge gives patients and caregivers something they can hold in their hands and hold each other accountable to.

We've got a job to do. Now let's go do it together.

Learn more about how Baystate Medical Center and BMP-Thoracic Surgery are perfecting care to surgical patients with lung cancer through a national collaborative called ProvenCare.

This post originally appeared on EngagingPatients.org, a blog dedicated to advancing patient and family-centered care. I am a member of the Engaging Patients Advisory Board and write for the blog. 

Photo Friday: Empire rising

More from the "always remember to look up" series.

The Empire State Building rising above the Church of the Transfiguration (Episcopal) on East 29th Street, New York City, shot on January 4, 2014.