Brain Tumor Survivor's Story Shows How EHRs Can Improve Healthcare

My daughter recently started a part-time job working for a private ophthalmology group practice. Her job is to scan patient data from paper files into the practice's new Electronic Health Records (EHRs) system. The group has several locations, and she received on-the-job training at one site before being assigned to work independently at another. Her instructor, also a part-time employee, is a teenage high-school student.

On her first day working on her own, my daughter was given instructions by the office manager that conflicted with instructions she received during training. The differences seemed important because they involved choosing which data to scan and which to omit from the EHR. When she pointed out the discrepancies to the office manager, they decided to seek direction from one of the doctors. His response, however, was indecisive. He wasn't sure and he didn't want to give the wrong advice.

"Until they make up their minds," my daughter said, "I'm just going to have to scan everything. It will be a waste of time and money."

When I heard this story, I remembered a statement by House Speaker John Boehner after the Supreme Court upheld the legality of the Affordable Care Act: "Obamacare will bankrupt our country and ruin the best healthcare delivery system in the world."

According to PolitiFact.com, a Pulitzer Prize winning feature of the Tampa Bay Times, when asked to provide facts to support the "best healthcare delivery system in the world" claim, a spokesman for Boehner noted that wealthy foreigners flock to the US to receive care "because of its cutting-edge facilities."

Of course, it's absurd to measure the quality of a country's health care system based on how well it meets the needs of "wealthy foreigners." No wealthy foreigners are likely to set foot in the offices operated by the group practice that employs my daughter, for example. But it's a typical practice frequented by ordinary citizens, and it lags behind its counterparts in other advanced countries when it comes to EHRs making it possible for clinicians to follow a patient over the course of a lifetime.

Whether it ultimately succeeds or not, the Affordable Care Act ("Obamacare") is meant to improve the healthcare system in the US. Among its many provisions, it includes a "Meaningful Use" initiative, as well as incentives, to encourage providers to exchange medical records electronically. But the process is proceeding slowly and, as one observer commented, "Sadly, too many physician's offices still keep our records in manila folders."

The comment was written in response to an article posted on September 19 by Sylvia Inéz Salazar, titled, "How Electronic Health Records Make a Difference in My Health and Health Care." Salazar, who works at the National Institutes of Health, was diagnosed with a brain tumor during her junior year of college at UCLA. Following her surgery, she explains, "It took a year before I could walk and compensate for facial paralysis. I was a proud brain tumor survivor."

After her recovery, she moved to Washington, D.C., to complete a Fellowship with the Congressional Hispanic Caucus Institute. One day, she fainted, and began to experience facial paralysis. "I was rushed to the emergency room where the doctors ordered a series of tests. I could see the look on my doctor's face before giving me the sad news... 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?

Fortunately for Salazar, she had the presence of mind to reach out to her former neurosurgeon in Los Angeles. "I sent him the MRI results taken in the D.C. emergency room. He was able to use his EHR system to look up my previous MRI results." When he compared the two, it was clear the tumor had not grown back. The "mass" seen on the new MRI was actually scarring from the brain surgery.

Without electronic access to my medical records, the emergency room doctors would have been unable to compare MRI results. They would have no way of knowing the new mass was not a brain tumor... 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.

Salazar says 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." Her experience inspired her to apply for the Health IT University-Based Training Program at The George Washington University in Washington, D.C. She was accepted and now looks 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."

That is also the goal of the Alliance for Nursing Informatics (ANI), which has joined other groups in the "Ask for Your Records" campaign, commented Ellen Makar MSN RN, in response to Salazar's story. "As informatics nurses we encourage nurses especially, but all consumers, to 'Ask for Your Records'."

For more information about EHRs and health information technology, visit HealthIT.gov. For information about ANI, visit allianceni.org.

I'm going to tell my daughter, too.