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Sunday, January 31, 2010

Rosa Parks in Health Care

In December 2008 and January 2009 there was quite a bit of controversy brewing over the implementation of an electronic transfer record in Washington, DC. A lot of the arguments used to decry or promote the new system would sound familiar in our current medical community. The paper transfer has been used for years. The poor, the illiterate and elderly were comfortable with the current system and would not be able to understand a new electronic version. Those favoring change pointed out the favorable outcome of less wait time, faster processing and ability to aggregate data. All these argument fluttered around us, as we said goodbye to the paper version of the National Capital Metrobus transfer and hello to the Metro Smartrip Card.

Within medicine, we are living in our time of controversy. People are taking sides: supporting some types of reform and not others. On January 28th 2010, I attended a meeting of a Health 2.0 group. This was the "8th month" check up. Most of us had met before, on May 27th 2009. At that meeting, we decided real-time patient access to the medical record was a first priority in attaining better medical outcomes for the patient and family. We spent the next eight months working feverishly toward that goal. We painted, spoke at medical conferences, gave interviews and wrote numerous blog posts on the subject. It was now time to work on strategy for the next year.

The definition of "Meaningful Use" and implementation of HITECH policy was being decided upon while we spoke. If patient access to the EMR/EHR was going to be a reality, we would need to do everything we could in the coming weeks to draw attention to the need for a patient's right to access his own data. We decided to speak to our congressmen and try to meet with staffers on the Hill. But we also decided we needed a symbol. We needed our own ribbon or armband. We decided the perfect symbol for our current lack of access is an empty USB on a Lanyard.

After proposing this idea, we heard of several companies who are encouraging patients to wear necklaces or lanyards with enclosed personal health records. These systems would function like med-alert bracelets. They allow you to fill in fields of data and create a stop-gap solution in a world without data transfer. Our Health 2.0 group decided to promote a symbolic use of an empty USB. We are encouraging patients to go to their doctor and request a medical record down-load onto the USB device. Our hope is twofold. We want doctors to view the patient's information as belonging to the patient and to consider the adoption of an electronic medical record that is patient accessible.

We may be asking a lot of a little USB, but symbols are very powerful.

That brings me back to the bus. I often compare the patients' rights struggle with the civil rights era. Imagine the civil rights era without Rosa Parks. Imagine a world where she gave up her seat and moved along quietly. Would that world be the world we live in today? I am going to ask you to do a very scary thing. I am going to ask you to take a USB to every medical appointment and ask to get a copy of your record. I am asking you to do this even if the answer will be no. This may impact your life and friendships. This may effect your work and standing within society. Sometimes we need to stand against oppression. Sometimes we need to sit in our seat until the authorities take us away.

I like to ride the bus. I like all the wonderful people I meet. I know that a lot of us are broken and sad. I see the elderly stumble and I see the homeless man reach out a helping hand. I see the young urban college student and the working poor. I see all of us as the patients were are in the end, deserving of respect and compassion. Seeing this, I ask of you, do not give up your seat at the table. Demand access to your electronic medical record.


  1. Beautifully written and poignant.

  2. Terrific. So eloquent, so articulate.

  3. Regina, you can count me in. All of a sudden, I can't wait 'til my next doctor's appointment, which I typically dread. I already know the answer, but I'll do it anyway.

    Love the point about the metro pass going electronic. Banking did, too. My 73 y.o. parents didn't have a problem with it. Sure, it was a change, but my gosh, my parents have lived through so much change in their lives, this is minute compared to the rest. They've lived through getting electricity, getting a phone, using morse code, getting a TV (after they were married and I was young), adding a bathroom (grew up with outdoor toilets), going to the bank, figuring out how to use checks/checkbooks, then using credit cards, then debit/atm cards, the VCR, the DVD player, the CD player, and mp3 players... and more and more! These "poor, illiterate, and elderly" probably all have cell phones. If they can live through a generation where Sputnik was launched, and all the technologies we take for granted, what's a measly electronic record?

    Keep it up!! :)

  4. Regina - GREAT POST.

    The SpeakFlower team is trying to address exactly this issue. ( - We're hoping to deliver something a group of activated patients will be proud of.

    Thanks for such passionate writing! As a physician, I share your sentiment entirely!

  5. From a good news perspective, I am getting treated at Duke's Comprehensive Cancer Center. They have an online system called Healthview, and they post my records for me online via this system. I am very grateful for it. Perhaps Duke could be used as a model, or at least an inspiration for other facilities to do better.

  6. It is very useful information. I like it very much. It will be help a huge number of people, who have the interest in this field. Keeps it up great work!!!!!. For more information about medical supplies you can check this website

  7. Hi Regina,

    This is an absolutely brilliant idea.
    How cool if on top of this, people will put a little sticker with their face on it on the USB?

    That way the message will be clear.
    The info more then belongs to us--It is US.

    Btw, I think you got one spammers in the comments.

  8. Please consider a USB device with built-in encryption (Lexar makes one).

    I am a fervent believer in the rights of patients to their own medical record data and have been for many years as a HIM professional but every precaution should be taken by providers and patients to build in privacy protection.

    Pat Rioux, RHIT

  9. You may be only one person in the world, but you may also be the world to one person.............................................

  10. Hi Regina,

    I was thinking of you when I saw this message from Organizing For American in my inbox today:

    "A few days ago, President Obama told a story about an OFA supporter in St. Louis who had volunteered during the campaign and organized her community for health reform, but recently succumbed to breast cancer.

    She didn't have quality insurance, so she put off crucial exams and didn't catch it early enough. And while she fought cancer, she also spent her final months fighting for a chance at health reform so others wouldn't go through the same thing.

    The President told this story to remind Congress, the nation, and us: We can't tell her family we're giving up on reform because it's too hard, or too risky.

    Congress is weighing options and hearing plenty of special interest voices telling them to give up. They need to understand that their constituents want them to keep fighting. So today, we're relaunching our Health Care Action Center to give you all the tools and information you need to fight for reform.

    Visit the Health Care Action Center

    At the Action Center, you can make calls, write letters, speak out in your community, and weigh in directly with Congress. There's information about what the President stands for, and personal stories that show why reform is so important.

    So check it out today:

    Many of our senators and representatives are working overtime to gather support for a final bill and pass reform, and they should know we're standing with them. And the rest need to understand their constituents still demand action.

    We're so close to real reform -- we can't stop now.

    Thanks for making it possible,


    Mitch Stewart
    Organizing for America"

  11. po po domo arigato

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