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

  1. Wow. How powerfully told – and yeah, I’d not connected the dots: you won because you DID get yer damn data!

    That’s pivotal. I wish we’re realized that during the Meaningful Use discussions in DC – but now we’ll pile it on to the post-rule discussions. Thanks!

    Hope you’ll be feeling better…

  2. Incredible. I can’t imagine how these stories happen. Well, actually I can. With the gigantic bureaucracy that is our health care system, we doctors and you, our patients, have a very challenging time with information flow. Can you imagine the impediments to internet/computer integration of patient records across hospitals/states/etc?? Everyday, I get reports of imaging from different sites, to be used as “comparisons” for the current CT/Ultrasound/MRI that I am reading. I’ll do five consults in an afternoon (for biopsies or other procedures!) and have only outside studies to review. Not one of them will be from my institution because people travel all over the place for their imaging. The travelling’s not the issue. The difficulty obtaining the studies is. There’s got to be some way that the systems can securely integrate information so we can best care for and be cared for.

    I’m sorry this happened. I wish we could make it better instantly. Maybe with more of these types of “shouts out,” the administrations around the country and the bureaucrats and government officials will see the light. Less regulation. More integration.

    Thanks for sharing.

    (BTW – that artwork is incredible too!! Powerful imagery!!)

  3. Wow — such a great succint article relating Regina’s story and your own. Thanks for all you do to make the healthcare system safer for patients, and praise for an article so well-written.

  4. This response is intended for Trisha, Regina, and Dr. Paul Dorio.

    Trisha, I thank you, as always, for being strong enough to share your pain. I want you to know that, on the one hand, I am sorry that you had to experience that horror all over again. No one deserves the treatment you received in the first place, much less all over again.

    On the other hand, your story made me smile for Regina. If her work can stir up that kind of powerful recollections, maybe it will help get through some of the thick skulls blindly, stupidly keeping our data ensiled and out of the hands that could make the best use of it.

    Regina, way to go, girl. I wish I could have been there for the Clinovations opening. I’m so glad Ted Eytan was there to get all those lovely photos.

    Dr. Dorio, you can “make it better instantly.” Doing so is mind-numbingly simple. Just tell yourself and your staff: It’s the Patients’ Data. It’s not yours. It’s not the office’s. It’s not the hospital’s. The medical records, health records, paper, microfiche, film, magnetic media: they’re all the property of the patients. If they need copies (and they won’t, not often), get it to them. If you can’t free someone immediately to make copies, let the spouse come back and make her own copies. The world won’t end if a patient or a spouse enters the Sanctum Sanctorum. Even if the data are in several forms, you’d be amazed how many of us can use a PC, a microfiche reader, a copy machine. Again, this won’t happen all that often. It’s not like you’re going to be overrun by patients demanding copies of CT scans ad lab results.

    Regina Holliday’s problems getting her husband’s data weren’t due to difficulties with collating varieties of media. Her problem was a hospital with a self-imposed stronghold attitude. A place where everyone she spoke to—doctors, nurses, clerks—considered her husband’s medical data their private property. As far as they were concerned, every note, film, fiche they produced was their info, For Pros Eyes Only. The patients and their spouses were (God, I hope they’ve started to come around) outsiders. The fact that federal and state laws now say otherwise, says the unwritten rule, is just a lot of silly government meddling. Giving patients their data is just asking for non-medical personnel to try playing doctor. That’s why almost every state law has mandated such outlandish rules for copying costs—hospitals and clinics lobbied to impose those ridiculous costs. That’s why Regina was told “That’ll be 73 cents a page and 21 days.”

    I don’t often get to say this, but Kentucky, so far, is the only state with the right idea, where medical data are concerned. In Kentucky, when a patient requests a medical record, the first copy’s free. That’s the way it should be everywhere.

    As for your problems with reconciling data types for HER meaningful use, I understand. The requirements for probably sound pretty outrageous, but you need to remember a few things. First, no one is forcing you to comply—not yet. You only have to comply if you want part of the recovery money. Second, all of these problems should have been solved years ago. Doctors have been dealing with the problems you outline for decades. So, you have to talk to your colleagues, which should have been happening before you got out of med school. In the next couple of years, some of you will have to change out the tools you’re using so that everyone can be on the same page. Don’t panic. A lot of those tools are available as Open Source products. For the ones that aren’t Open Source, well, you’ll all have to learn to compromise.

  5. Looking over my post, I think some folks might get the impression that I’m attacking Dr. Dorio. Sorry, Doc, that wasn’t my intent. I realize that you were in no way responsible for Regina Holliday’s horrific experience. In fact, from your own posts, I’m guessing you run a very open, sharing office, as far as patient-data are concerned (in a within-the-bounds-of-HIPAA sort of way, naturally).

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Trisha Torrey
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