Recently, I was admitting a patient to the general pediatrics service who was followed by several specialists from different hospitals, required a number of medications and was quite ill. We were obliged to start treatment immediately given the severity of his illness, but unfortunately, this was his first visit to Children’s Hospital Boston and none of his records were available to us.
He and his mother vaguely knew his medications, but some of them had recently been changed, and they were unsure of the dosages. As this was an unexpected hospital visit, they did not have a list available or the prescription bottles on hand. Multiple phone calls and many hours later, we were finally able to convene what we hoped was an accurate list of medications, medical problems and allergies to ensure that we were giving him the proper treatments without putting him at risk for medication interactions or other adverse events.
Online tools and software are widely available to manage a multitude of aspects of our lives — our banking, taxes, calendars, and even music and movies. These systems can rapidly aggregate and arrange information from different sources into one simple, easily perusable place at the press of a button.
But when it comes to managing our health, such online systems are conspicuously lacking or, when they exist, inadequate. Patients and families are expected to remember, organize and manage what is frequently an overwhelming amount of complicated information. The recommendations and prescriptions of one specialist must be added to that of another, appointments in various locations must be noted, and diet and exercise recommendations must be implemented. When health care providers themselves lack access to a patient’s complete medical record, they often must rely on patients or their families to keep them abreast.
In a recent analysis of all acute care visits in Massachusetts from 2002-2007, we found that a large proportion of adults seek care at multiple hospitals. It’s unclear why they receive care at different sites — relocation, geographic convenience, displeasure with a previous hospital or other reasons — but they all end up in a new hospital system that typically has limited or no access to records describing their medical conditions and prior care.
This fragmented situation places patients at great risk for less-than-optimal or even inappropriate care. Despite every clinician’s best efforts and intentions, there are countless anecdotes of patients receiving the wrong medications, wrong doses or unnecessary tests simply because their records weren’t readily available.
I think this problem can be solved. Multiple stakeholders, including the federal government, are making substantial investments to build and promote systems to allow health information exchange between institutions, and to give patients and their families access to this information. One important option is personally controlled health records. Most systems are still in their infancy, allowing access to select information, such as the patient portal at Children’s Hospital Boston (mychildrens.org), but as these systems mature, they will allow greater and more complete access to health information across care sites — by patients and clinicians alike — promoting safer and more effective care.
Hopefully, in the near future, I will have immediate access to a patient’s complete record at the time he’s admitted. I’ll be able to initiate treatments without delay, without worrying that I am putting him at risk for complications or subjecting him to unnecessary tests.