How Electronic Health Records Make a Difference in My Health and Health Care

Graduating from UCLA was an accomplishment for me and my family. My Mamá and I emigrated from El Salvador to Los Angeles when I was five years old. Not only did my Mamá raise me, but she helped me pay for college by working as a housekeeper for Marion Ross, the actress who played Mrs. Cunningham for the popular TV comedy Happy Days. Suddenly, during my junior year, I began having difficulties concentrating in class. I lost hearing in one ear. My grades began to suffer. I was expelled because of my academic performance. After a series of extensive medical tests, my doctor told me the unexpected news that I had a brain tumor and needed immediate surgery.

I had many questions: Would I survive the surgery and still be able to function? How was I going to tell my Mamá? Maybe the whole thing was a dream that went wrong, and I would wake up. Such a thing could not happen to a healthy 20-something with no family history of brain tumors or serious disease, could it? After learning everything I could about the risks of brain surgery, I realized that if I wanted to live, the only alternative was to endure the eight-hour surgery. The intensive care unit after the surgery was a blur to me. Sometimes I gained enough consciousness to see my Mamá weeping by my bed and trying to communicate with me in Spanish and English. I struggled to tell her that I was still myself, but my body would not respond. It took a year before I could walk and compensate for facial paralysis. I was a proud brain tumor survivor.

How Can I Track My Health History in One Central Location?

The questions continued: What was the probability of the tumor growing back? What were the latest treatment and prevention approaches? How could I keep track of my MRI and CT results, post-surgical side effects, medications, allergies, and therapies? I felt overwhelmed by the amount of information I needed to collect and keep. In my heart, I wished for an organized method to track my health history in one central location. I know now that such a system could be found in electronic health records (EHRs). I also know the difference that EHRs can make in ensuring a good health care outcome for patients.

Shortly after I moved to Washington, D.C. to complete a Fellowship with the Congressional Hispanic Caucus Institute, I fainted and began to experience facial paralysis. I was rushed to the emergency room where the doctors ordered a series of tests. I had to do my best to remember and communicate my health history with the few records that I had. I could see the look on my doctor’s face: the hesitation before giving me the sad news. Despite all of my efforts, he told me the brain tumor had grown back. My worst fears had come true. I had an instant recollection of the smell of the operating room, the look on my Mamá’s face and the loss of dignity I felt when I could not take care of my own bodily functions. Did I have the physical and emotional strength to go through this life-changing experience again?

Just to make sure, I took time to reach out to my former neurosurgeon in Los Angeles, CA. I sent him the MRI results taken in the D.C. emergency room. He was able to use his EHR system look up my previous MRI results and compared them to the MRI taken in the D.C. emergency room. Based on his comparison, the results were clear. He explained that the tumor had not grown back! The tests identified what looked like a mass, but it was actually scarring from the brain surgery.

EHRs Help Me Get Better Health Care

Without electronic access to my medical records, how could the D.C. emergency room doctors compare my current and previous MRI results to catch the fact that the new mass was not a brain tumor?  The answer, sadly, was that they couldn’t.

This experience showed me the benefits of working with health care providers who use EHRs and how EHRs helped me get better health care. It also proved to me that we should all be able to access our own health information faster and easier so we can be more effective partners in our health care. It’s about  making sure health IT is built to support and address the needs of patients. Exit Disclaimer

Moving forward, preventing another misdiagnosis is a priority for me, and I have maintained health insurance coverage with the company I had when I was living in California for two reasons. First, they performed my original surgery and know my health history. Second, they maintain and support an EHR system that provides both my doctors and me with access to my complete health history no matter where I live. For example, with EHRs my doctors in D.C. and Los Angeles, CA can compare my current and previous MRI results before making a diagnosis or prescribing treatment. My current work at the National Institutes of Health provides me with the opportunity to understand the role health IT plays in the situations cancer patients face when they are receiving treatment, dealing with side effects, or working with their providers.

Joining the Ranks of Health IT Professionals to Help Patients Get Better Health Care

I have, in fact, become so inspired by the difference EHRs have made in my own care, and other patients like myself that I wish to join the growing ranks of health IT professionals helping providers and hospitals across the country make the transition from old-fashioned paper record-keeping to EHRs. I am happy to report that earlier this year, I applied to and was accepted by the Health IT University-Based Training Program at The George Washington University in Washington, D.C. I am now looking forward to learning new skills that will allow me to make a real contribution toward the EHR implementation efforts that help patients just like me get better health care—the high-quality care they need to cope and make decisions about their diagnosis.

Based on my experience, EHRs are a life-saving necessity because they help avoid misdiagnosis or medical errors, and they allow me and my doctors to track my complete health history—anytime, anywhere.

For more information about electronic health records and health information technology, visit HealthIT.gov.

5 Comments

  1. Dana Allen-Greil says:

    Silvia, Thank you for sharing your story. It helps paint a vivid picture of the core problem and the frustrating fact that EHRs aren’t a reality for so many patients. I have also used the same insurance company for almost a decade now, partly because I can access all of my information easily–test results, notes from appointments, prescription records, even changes in my weight and blood pressure during visits. For someone with a chronic disease (I have type 1 diabetes), this has been a true time saver and makes it easier for my doctors to understand how they are treating me as a connected team. But your story really brought to life for me how EHRs aren’t just a modern convenience; they are a necessity. Thank you for telling your tale and making this point so compellingly. I wish you the best as you embark on a new step in your career and, of course, the best of health going forward.

  2. abk says:

    Ford, GM, Sears, Walmart, Banks … could not exist today as we know them without EDI (Electronic Data Interchange).

    This is one of the issues with our healthcare.

    There is no mature “EDI” equivalent for Hospitals and Physician’s offices to communicate and exchange patient information.

    Standards are still evolving and while “Obamacare” is pushing hard through their “Meaningful Use” initiative and incentives to get providers interchanging medical records electronically, adoption is still proceeding in baby steps.

    Sadly, too many physician’s offices still keep our records in manila folders.

    • james says:

      You story was so moving. I am in agreement with you on the EHRs. It makes sense that EHRs will improve healthcare. Your conclusion is inspiring. You are helping to improve the system and I am grateful.

      Thank You!

  3. Rex R says:

    Electronic records should be used and would result in better care for patients. The delay of time to process sharing of non-electronic records, even by fax, could literally mean the difference between life and death. How much longer will this take for EDI to be 100% required standard is the question facing us now.

  4. Ellen Makar MSN RN says:

    What a great story.. So happy for you that things worked out well.
    One of the reasons EDI works in banking, retail and ironically medical billing ….. Is that there is a demand for it.
    That is the premise behind the Alliance for Nuring Informatic’s support of the “Ask for you record” campaign. We join many other organizations in working toward increased consumer engagement. As informatics nurses we encourage nurses especially , but all consumers to “Ak for your Record” . Please visit our Facebook page ” ANI eHealth pledge”.

    Better tools and increased access to electronically obtain records will lead to increased engagement of consumers …..this increased engagement will then lead to even better tools etc. Thanks for sharing !

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