Recently, we were invited to take part in an case presentation focused on a young female patient. The reason for our specific invitation was because a key component in the patient’s case was centered on her electronic health record. This kind of story was not new to us – in fact, stories like these are becoming almost common everywhere. But this particular conference promised to be very special, because the patient herself was asked to take an active role and present the story from a unique perspective – her own.
Seated on stage in a hospital gown and accompanied by her I.V. pole, the patient related a 4-month history of symptoms. She had obviously told the story dozens of times – through seemingly endless encounters – to her primary physician, hospital residents, medical students, emergency physicians, and just about anyone else who would lend an ear. Listening to her share her story with a large audience while still a patient in the hospital was incredibly powerful; it was difficult not to become emotional with her as she welled up with tears. She told a complex, though very coherent tale that included her past medical and family histories, her employment, her hobbies, and her unusual signs and symptoms as they developed over an extended period of time. When the patient was done, her case was presented from another perspective: the way it was recorded in her electronic record. For a brief moment, those seated in the audience were confused. Then the theme of the conference became evident – these were completely different stories.
This was no case of mistaken identity or registration error. The chart presented at the conference did belong to the patient, but the story told by the chart was wrong. Reading through the chart, it would be easy to come away with the same sense as her care team; this must simply be a common illness that wasn’t responding to conventional treatment. Encounter after encounter, a new plan was devised to address the presumed diagnosis. But the patient’s telling of the history barely mentioned any symptoms related to that diagnosis. Her version focused more on how her life was affected, how she could no longer take care of her daughter, how she could no longer exercise (which she did avidly), and how she was sinking deeper into despair and losing hope. Woven through all of this were the historical details and seemingly obvious physical manifestations that might easily disclose the real cause of her symptoms. A few basic questions about her family history would also reveal multiple immediate family members who suffered from the same disease! But even if these questions had been asked, and even if the story had been heard, the image in the mirror – her chart – did not reflect an accurate understanding of the patient.
We often solicit comments from readers, and the response is alway encouraging. It is clear that our colleagues in the medical community feel a strong sense of obligation to their patients and care deeply for maintaining the sanctity of the physician-patient relationship. However, many feel the electronic health record has become a barrier to developing and nurturing that relationship, standing in the way understanding their stories. One poignant letter from a cardiologist in Florida, Eugene H. Eisman, MD, does a beautiful job in crystallizing this sentiment. Dr. Eisman writes:
“Many of my patients end up hospitalized where I do not have privileges. Almost every attending is attentive enough to send me a discharge summary. These, however, are EHR-generated. The patient may have been hospitalized for 3 days, yet the summary is seven pages long. It is filled with total nonsense, such as whether the patient had traveled to North Africa (even though he was hospitalized with a fractured hip while skiing in Colorado). The attending has managed to cut and paste reports of every chest film and CBC, and I have pages of normal studies. The final diagnosis and discharge medications are difficult to find in this morass of words. I cannot force myself to read this document, and it is thrown into his chart after a cursory glance. Yet, I can’t sleep at night. Is there buried in this seven-page document a discovery of malignancy, etc.?”
Dr. Eisman’s words are powerful because they reveal an oft-overlooked truth about modern medical records. The patient’s chart, once considered a sacred text containing the key inflection points in a patient’s story, has become merely a filing cabinet in which to stuff every piece of data about the patient, no matter how mundane or trivial. No thought need be put into preserving the important details, because now absolutely every detail can be included. We have become so overloaded with the unimportant, that we may lose the truly critical in this sea of information. It has become, therefore, imperative that physicians rediscover the patient in their story, and not rely solely on the poor reflection we may find in their chart.
Thousands of years ago, the apostle Paul wrote that “we see now as through a glass, darkly.” Borrowing from his original meaning, these ancient words have been quoted throughout literature to describe an “incomplete understanding,” often mixed with a state of despair. Today, we might think of the electronic record as the glass – or mirror – reflecting the patient’s story. Ironically, in spite of having more information than ever, the image we see may be incomplete, and possibly even wrong altogether. While the amount of available data may at first glance appear enlightening, the reflection in the glass may be rather dark indeed.
Dr. Notte is a family physician and clinical informaticist for Abington (Pa.) Memorial Hospital. He is also a partner in EHR Practice Consultants, a firm that aids physicians in adopting electronic health records. An avid programmer, he has published software for handheld devices in partnership with national organizations, and he is always looking for new ways to bring evidence-based medicine to the point of care. Neil Skolnik, MD, is associate director of the family medicine residency program at Abington (Pa.) Memorial Hospital and professor of family and community medicine at Temple University, Philadelphia. He is also editor-in-chief of Redi-Reference Inc., a software company that creates mobile apps.