THINK KEEPING your life organized is hard? Try keeping your doctors organized.
In this era of fragmented health care, patients find themselves in the impossible position of having to coordinate their care themselves—a task that many can’t meet. Having multiple chronic medical conditions often means being subjected to a dizzying assortment of specialists, medical terminology, and tests that can quickly overwhelm patients.
How many times have you found yourself in this situation: You have a patient in front of you who is a “blank slate,” so to speak—no notes in your EMR, no labs, no imaging. The only information you have to go on is what comes out of her mouth (or, in some cases, history that the family offers). If the patient is sick, sometimes you have to take action on this information. You don’t know if it’s accurate, but it’s all you’ve got.
Did a doctor ever tell you you had a heart attack? “No, they said I almost had one.”
Did you ever have stents put in your heart? “I think so.”
What medications do you take for blood pressure? “A blue one and another one that starts with b.”
Any allergies? “I once took an antibiotic and it made my throat swell up.” Which one? “I forget.”
Patients should not be required
to be their own medical record.
Many times we label these patients “poor historians,” but in reality their only mistake is placing too much trust in their doctors. Hospitalization is a stressful and confusing time, and sick patients can’t be expected to ask a lot of questions and keep everything straight. What’s more, we’re not very good at telling patients what’s happening to them in the hospital. And when we do, we tend to explain things to them in simplified terms that may not be sufficient when it falls on them to relay this information to the next provider they see. It might be enough to tell a patient they were admitted for an abnormal heart rhythm, but if I’m seeing them in clinic I need to know which one.
This kind of system is frustrating and unfair, for patients and providers alike. Patients should not be required to be their own medical record, recalling diagnoses and treatments from decades ago, symptoms that they have long forgotten, and chronologies that have been blurred and distorted through the lens of time.
One solution to this problem is to hire a patient advocate, a growing trend recently highlighted in The New York Times. But these professional health care navigators—some of whom are doctors themselves—are a costly luxury, out of reach for those who would benefit the most from their services.
The real systemic fix for our current piecemeal delivery of health care is the institution of a universal integrated EMR that facilitates record sharing and communication amongst the multiple interdisciplinary members of a patient’s care team. As much as EMRs are maligned these days, this is one area in which they are indispensable. I am already beginning to see improvements in continuity of care. As more New York hospitals adopt Epic, I have been able to review my patients’ histories at the click of a button—a huge upgrade over the archaic process of faxing a medical records request and then waiting days for a response. And being able to see lab tests and imaging from an outside facility saves the hospital the cost of doing a duplicate workup.
It’s hard enough living with multiple ailments without also having to serve as one's own advocate and care coordinator. The fact that we often find ourselves stuck with incomplete information after taking a history is not the patient's failing—it is ours. And despite their shortcomings, EMRs with broad intercompatibility are a win for patients. I look forward to the day when fragmented health care is a thing of the past, and the hospital can dump its fax machines once and for all.
Note: A version of this article appeared on KevinMD.com on September 4, 2016.