Need your health records? Click the blue button

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There's an effort underway to make all of your online health records easier to find.

Blue Button Connector is a new beta site launched this week from the Office of the National Coordinator for Health Information Technology (yes, that's a mouthful). Suffice it to say, it's the federal government's attempt to make health records more accessible.

The site is teaming with insurers, hospitals, physicians, pharmacies, labs and others to create a central clearinghouse for your health records — a one-stop download destination.

It's voluntary, and so far some of the biggies have signed up — from Aetna, Blue Cross, Humana and United Healthcare on the insurance side to CVS, Rite Aid and Walgreens on the pharmacy side. 

There are fewer hospitals and physicians involved. In Massachusetts, four providers are connected — Beth Israel Deaconess Medical Center, Children's Hospital Boston, Harbor Health Services and Partners Healthcare — while there are none in neighboring Rhode Island.

The immunization registry is even scarcer — it is only available for residents of Indiana, Louisiana and Washington state.

But Blue Button Connector is a step in the right direction!

Bill Gates doesn't need Powerpoint to shine! #stopthemyth

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Bill Gates has proven he knows something about philanthropy. And now marketing, promotion and donor communication.

The 2014 Gates Annual Letter from the Bill & Melinda Gates Foundation is a masterpiece of philanthropic communication — an immersive online experience that very solidly makes the case for global assistance.

The digital "letter" has everything you would expect from a fundraising report and appeal — prose, facts, charts and compelling stories. It also sprinkles in videos, photos, charts and motion graphics, interactive polls, infographics and slide decks. The site's design is inclusive — it automatically translates into six languages, is responsive and looks great on mobile devices. And there's a downloadable PDF for those who want a more conventional annual report.

The "ask" comes in the form of a hashtag (#stopthemyth) that links to partners who are doing the work supported by the Gates Foundation. 

The letter focuses on three myths that keep us from *really* helping the poor. Bill and Melinda Gates are the authors of the three sections — they squarely attach their names and reputations to the content.

The three myths:

1. Poor countries are doomed to stay poor. 

Bill Gates:

"When I was born, most countries in the world were poor. In the next two decades, desperately poor countries will become the exception rather than the rule."

2. Foreign aid is a big waste. 

Bill Gates again: 

"Health aid is a phenomenal investment. … A baby born in 1960 had an 18 percent chance of dying before her fifth birthday. For a child born today, the odds are less than 5 percent. In 2035, they will be 1.6 percent. I can’t think of any other 75-year improvement in human welfare that would even come close."

3. Saving lives leads to overpopulation. 

Now Melinda Gates: 

"The planet does not thrive when the sickest are allowed to die off, but rather when they are able to improve their lives. Human beings are not machines. We don’t reproduce mindlessly. We make decisions based on the circumstances we face."

Finally, the letter ends with an affirming "Looking Ahead" section. The call to action isn't just about giving money — it's about busting the myths (remember the hashtag #stopthemyth) and showing that the "bad news" most of us hear every day can be replaced by the "good news" that comes out of global togetherness.

We hope you will help get the word out on all these myths. Help your friends put the bad news in context.

And to spread that news, Bill Gates asked Jimmy Fallon for his help in making a viral video.

Bill Gates wants to promote his website, GatesLetter.com, with a viral video, but Jimmy doesn't think they have time to make one.

When voices clash, patients must speak louder

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"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!

2014-0116-Lisa Adams.png

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:

 

What and why people share online (it's not what you think!)

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Forget cat pictures. People want to share real information.

Of the 15 most shared news stories on Facebook on June 17, only one was fluff. That's the conclusion from a report published by the John S. and James L. Knight Foundation. 

The top shared stories were all of substance — all going deep with information, insight or perspetive.

This provides content owners and creators — especially in the health care arena — with a prime opportunity to be that trusted source of information.

Read more at the Knight Blog.

Source: Knight Blog, accessed 6/24/13.

Source: Knight Blog, accessed 6/24/13.