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!

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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:


Putting the bottom of the list at the top

This is the time of year when lists rule — from Santa's naughty and nice list to the incessant best-of-the-year lists.

The U.S. Centers for Medicare & Medicaid Services (CMS) added some new items to their growing list — how well patients fared after knee or hip replacement surgery at hospitals nationwide. The ratings are based on the rate of major complications and readmissions within 30 days for hip and knee replacement patients.

The list is not the story. How the lists are being presented in the media is.

NPR's health news blog, Shots, ran a piece titled "Medicare Names Best And Worst Hospitals For Joint Replacements" along with a list — of the nine worst offenders on the list.

Kaiser Health News played it straighter with a table that lists all 192 hospitals that were either better or worse than average.

In the past, most media would focus on the top performing hospitals and expose situational examples from those that were lacking. Now the focus is on the bottom, looking up.

Ratings are important, but they are only part of the equation patients must examine when they are seeking elective surgery. Your best bet is always to do research and ask around, especially of people who are familiar with the hospital, surgeon and care team at the facility you are considering.

For health care PR folks, you always need to be ready to show how you are constantly improving on quality and experience. Because even if you are at the top of the list, there is always room for improvement.


50 years ago today …

Just about every media outlet has a tribute to the 50th anniversary of the March on Washington.

But only one site — www.wearestillmarching.com — truly immerses you in Martin Luther King Jr.'s iconic speech.

It was developed by the National Park Foundation and made by ad agency Organic with support from Google.

Relive August 28, 1963, today.

Effective timeline storytelling in the digital age

The venerable "timeline" has gotten plenty of attention in the digital age. 

Timelines have long been a standard storytelling tool, but they have often been dry or complicated.

The New York Times just upped the ante with a recent web feature ("Riding the New Silk Road," July 21, 2013) that is elegantly simple and cleverly captivating.

The Times' feature blends photos and looping videos with minimal text attached to a background map to illustrate how Hewlett-Packard ships electronics from China to European markets. As you scroll down the page, the background map moves with you while points along the map connect to the forefront images and video.

This storytelling technique would be ideal for health care — give a behind-the-curtain glimpse into what is a very complex and confusing world for patients. 

It could be used to tell the story of how a blood sample moves through the system — from blood draw to transport to the lab to the computer to the physician making a decision based on the results. Explain each point along the way and patients will better understand why it takes "so long" to get those results back.


What is your health care wish?

CNN just launched a new project, "The City," which asks people to share their wishes for making their cities more livable.

Using the hashtag #MyCityWish on Twitter, Facebook or Instagram, people are sharing their hopes and dreams for where they live.

What about health care?

How about asking patients, their families and your community what their health care wishes might be? 

The result would be an incredible crowdsourcing experiment that could begin a fabulous dialogue and community collaboration to build a healthy future.

Source: CNN