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Archive for July, 2010

“Give Us Our Damned Data” Causes the First Meltdown in Awhile


Regina Holliday and Dr. Ted Eytan

Photo compliments of R2DC on Flickr

Regina Holliday’s husband, Fred, age 39, died of cancer in June 2009 leaving his wife, and his two young, beautiful children behind.  During their journey through the healthcare system to try to get Fred the help he needed, too many hurdles were put in their way.  Their story makes you want to scream.

Among the horrors of their journey was the fact that Fred was transferred from one hospital to another – without his medical records. With no records, Fred could not be treated. Regina attempted to get the records transferred, including returning to the first hospital to try to transport them herself.  Instead she was repeatedly stonewalled. Ultimately she was told that she could return to pick up the records in 21 days, and it would cost her 73 cents per page.

None of us can imagine how devastating and frustrating that must have been for her. Fred suffered physically, Regina suffered emotionally.  But today that devastation has become her passion and her mission in life.

Regina is not so much a fighter as she is an artist.  Don’t get me wrong – the girl can fight!  But she fights with the tools only she knows how to use to make her important points.  Those tools are canvas, brushes and paint – and talent that just doesn’t quit.

Even before Fred passed away, Regina began her fight by painting a series of murals on the sides of buildings in and around the Washington, DC area, where she lives.  Her first mural was called 73 Cents.  It’s located at 5001 Connecticut Ave. in Washington, DC.  It depicts some of the many horrible outcomes and experiences she and Fred went through to try to get those medical records.

Since then she has painted other murals, and other paintings – enough to do a showing last week, sponsored (supported by) Clinovations, a company known to us in the empowerment business, but perhaps less known to you.  Clinovations is working to change American healthcare.  They “get” what Regina’s work is all about.

OK.  So here’s where I begin to fall apart.  Please bear with me….

The largest painting is called Give Us Our Damned Data. It features 19 authors (and yes, I’m included — center to the right). All of us have suffered at the hands of the healthcare system, and all of us have written books about our experiences in hopes of improving the system for others.  Here’s a thumbnail version.  You can see a larger version here.

Give Us Our Damned Data!

Photo compliments of Cindy Throop on Flickr

You may recognize a face or two. Each of us is holding a tablet with portions of our book covers.  Each of these folks (Regina lists them all here) is a colleague of mine. Many I have met in person. We support each other, care about each other, stay in touch with each other. We are members of a fraternity that none of us would wish to share with our worst enemies. But we feel so lucky to have each other.

I shed four reasons worth of tears:

1.  I am so proud of my friend Regina for working so hard and sharing her sorrow in such a meaningful way.  I know it’s been a catharsis for her, and I know many others will NOT suffer because Fred, Regina and their children did.  I’m proud to be her friend, and at being included in her wonderful, poignant painting.

2.  I cry for each of the people in the painting.  Each of them has lost someone, or almost lost someone to a heinous mistake, impaled by a healthcare system that is supposed to fix and heal.  Each book is a catharsis, and each author hopes to spare someone else – maybe you – the pain of the loss of health, well-being, trust, and perhaps a loved one, too.

3.  Some tears are post-traumatic stress.  Each time I think about Regina and Fred’s story, mine comes rushing back, too.  Even though I share my story frequently, recounting the facts isn’t the same as facing the emotions.  The fear, helplessness, frustrations – when I first looked at Regina’s painting, I just fell apart.  It’s been a year since the last PTSD meltdown.  But there have been four more episodes in the past 30 hours. I keep thinking it’s getting easier… but… now I’m not so sure.

4.  My fourth reason — strangely enough — is relief.  As I carefully studied each of the paintings in the collection, I was hit with a truth that is so fundamental to all of this.  MY story is the polar opposite of Regina and Fred’s.  They could not get Fred’s records. I GOT MINE!  And that’s the point… !  If I had not gotten mine, then I would never have figured out I didn’t have cancer.  I would have been treated for a disease I did not have.  I would have been debilitated by chemo for no reason. At the end of my chemo, I would have been declared cured of an incurable cancer. But none of that happened BECAUSE I GOT MY RECORDS!

I’m healthy, and happy, and my life has never been better.  And my great revelation is that I am all those things because I was able to get copies of my medical records.  No one stood in my way or refused me copies or tried to charge me for them.  Along with my friend E-patient Dave DeBronkart – we are the poster children for the absolute GOOD that comes from sharing records with patients.

Over the next several years, you will hear discussions about whether patients should be able to access their medical records through the internet, or get copies much more easily than they do today (which, as you can see, isn’t always easy)… please remember this story.  Remember Regina and Fred.  Remember Dave DeBronkart’s and my good outcomes. It’s called meaningful use.  And it’s important.

And then fight your good fight to be sure we can always get those records.  They may save your life, too.

Interested in learning more about Regina’s work?

•  Here is Regina’s blog.

•  Here are Cindy Throop’s photos of the evening’s festivities.

•  Here is Dr. Ted Eytan’s discussion of the showing, including several dozen photos (and larger versions of the one above.) Please notice all the smiles.  Some irony, of course, but the recognition that life does go on, and important work is being done.

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Uh-oh Video! (Can’t escape it…)

When it comes to TV and video, Al Roker provides one of my favorite quotations:

“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”

Oh, yes, Al. I know how you feel….

However — I’ve decided to come out of my video-avoidance closet to share the following with you all.

First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!

Visit msnbc.com for breaking news, world news, and news about the economy

(Even got my two cents in about hiring patient advocates!)

So that’s the first one.  But if I’m going to jump in to the world of video, I might as well do it with both feet.  Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada.  I enjoy speaking!  So in my attempts to do even more of it, I’m told I need to have a professional video made.  So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.

It’s not like I’ve never done TV before – I have done local TV on a number of occasions.  And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years!  But video, in general, has just always been a step I’ve avoided.

Until today.  So, OK, I feel better now.  [[gulp]]

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O! Fun to be Found in O Magazine

In the five years I’ve been working on patient empowerment and patient advocacy, I’ve been thrilled to have been quoted in the likes of the Wall Street Journal, US News & World Report, Forbes, Fox, NPR, PBS and others…

But now I know I have arrived — because O Magazine came calling!  Sure enough — an article called Someone on Your Side – it’s about hiring a patient advocate to help you through a medical problem. Because I am the founder of AdvoConnection and work extensively with private patient advocates, I am one of the people quoted in the article.

I join three of my distinguished (and very talented!) colleagues.  Hari Khalsa is the Health Whisperer.  One of her patient-clients who was being treated for thyroid cancer just could not get her doctors to coordinate her care.  Hari stepped in to make sure the care was coordinated and Tracy, the patient, got what she needed.

Gail Gazelle is cited in the article, too.  Gail owns a private advocacy business called MDCanHelp.  Gail points out that too often doctors just don’t have the time to devote to care coordination as they should.  Private patient advocates step in to fill the gap.

And Ken Schueler, who has been coordinating care for cancer patients for many years, is quoted, too.  Ken provides some advice for finding good health information online about diseases, clinical trials and more.

The most important information for you?  When you read the article, you’ll realize how important it is you find an advocate to help you.  Although the Patient Advocate Foundation might work for you if you can’t afford an advocate (they handle insurance and  claims issues) — if you need care coordination and help with your medical decisions, then you must give serious consideration to hiring a private patient advocate.

So how do you find these people?  Simple:  a directory of advocates who have been reviewed for their expertise, and work closely with patients like you everyday:  www.AdvoConnection.com.

Private patient advocates provide you with improved health outcomes AND peace of mind.

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