Sharing medical records with patients can save lives

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.

Sharing medical records with patients can save lives

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.

Trisha Torrey blogs at Every Patient’s Advocate and is the author of You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve).

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  • SarahW

    I see only physicians that will immediately release my laboratory results to me.

  • SarahW

    Labs and other test results, that is.

  • http://somebodyhealme.dianalee.net Diana Lee

    This is such an important message. Thank you for spreading it Trisha and Kevin.

  • http://www.heartlandclinic.org/plattecity David Voran

    Have always felt transparency was the best thing for me and my patients … even back in the old days of paper records. I’d leave the patient in the room with their chart and ask them to review it while I finished with another patient. Upon returning we’d often discover sheets of labs or even phone messages in the chart that the patient discovered weren’t about them.
    The great thing now electronically with our portal nearly 80% of our active patients have access to their chart from home. The only downside is that we haven’t opened up physician notes to them yet. Turns out this has to be done system-wide and there are still too many physicians in our network that absolutely do not want their notes viewable by patients on line even though HIPAA requires patients have access … they have to come into medical records to see their notes.
    Of course, for many of us physicians, all the patient needs to do is ask and we provide them our notes either by cutting and pasting them into a message or by converting them to a secure PDF document that we can send them, write to a disk or print for them.
    Our link to the regional HIE is nearly completion and this will provide one more avenue for patients to access their data. As other hospitals and physicians in the region link up the on-line record will gradually become complete.
    Getting closer every day but still so long a journey to take.

  • J.T. Wenting

    My father experienced that several years ago.
    He got access to his medical file through a fluke, the nurse retrieving it couldn’t give it to his doctor who was late and the nurse about to go off duty, so she left it on his bed.
    He started reading and found that the records detailing the procedure to be performed were for someone else with a completely different condition.
    His own required treatment was not in there, was later found in that other patient’s file.

    When he notified the doctor of that, the man went berserk.
    Not about the error in the file, but about my father reading that file. Apparently hospital regulations said that medical records are confidential from the patients and their families, you’re not supposed to know what your doctors and nurses decide about you…

    Such attitudes and the errorst that go unnoticed because of them by hospital staff may well explain at least part of the medical failures that happen so often.
    Of course by the time an investigation is launched the records will have been “corrected” without logs being kept.

  • http://www.healthplanone.com/blog Lucy Dylan

    There’s no doubt that patients should have access to their medical records, especially now that the technology for electronic medical records is there. Even making use of electronic medical records could help save lives, allowing doctors to access patient records via a computer rather than a slow, cumbersome fax machine. Your story is the reason why doctors should share records with their patients, especially when health is at stake.

  • MillCreek

    So far unmentioned is that electronic medical records are not a panacea to this issue of transferring records. If the hospitals or clinics use different EMRs, the chance that each system will be able to import or use the information from another system, is very low. Your hospital that uses McKesson cannot read or import the hospital records from Epic.

    It will be a long time before the issue of common data formats and importing and exporting of EMR data is solved. Until then, hospitals will have to continue to print out the record, or at most burn it onto a CD for the patient. But that data will not get into the other hospital’s system unless someone rekeys it or scans it.

  • DCPharm

    Three years of seeing different specialists and having many radiological and lab tests and I am the one that is still connecting the dots. And sometimes tying the pieces together, because each specialist focuses on their area of expertise and not the big picture. And yes, I have had to pay for records and wait for records & check on whether radiologist reports were sent (as requested) to another provider before my next appointment.
    And MillCreek is correct. EMR’s don’t usually talk to each other. Closed systems like VA & Mayo Clinic (perhaps Kaiser staff clinics?) are the only systems that I know of where there is one electronic record that can be viewed by all of the different specialties that see a patient. As I don’t have access to these, I trudge from one specialist to another with copies of notes in hand. I have learned to ask them to document that since I am supplying records & background information for them, I expect reciprocation on the other end. In essence, I am my own quarterback.

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