Patients increasingly are able to access medical records and physician notes through portals, but often they encounter medical jargon that can cause confusion, or in some cases, even anger, Tara Parker-Pope reports for the New York Times.
While patients have had legal access to their data since the early 2000s under HIPAA, there have been hurdles preventing easy access. To help address these barriers, CMS and the Office of the National Coordinator for Health IT (ONC) issued final rules on interoperability, patient data access, and information blocking that went into effect in April 2021.
There are potential benefits to open access for providers, patients, and researchers. Easy access to patient data can allow providers to be more efficient and accurate with patient care, lowering misdiagnoses and duplicate testing.
In addition, patients and caregivers can feel more involved in the care journey, which is a strong predictor of health outcomes. Researchers also benefit as many systems allow patients to easily opt in to sharing their data and samples with studies, contributing to faster and more economically efficient solutions.
Despite the advantages of facilitating patient access to medical records, there are some inadvertent downsides, Parker-Pope writes—including the experiences several health care providers shared on Twitter last week about patients getting upset by physician notes.
For instance, health care workers on Twitter identified (and clarified) several phrases that caused patients to be upset, including:
According to Parker-Pope, these misunderstandings among patients are becoming more common as patients gain greater access to their EHRs. In response, health care providers are advising each other to be thoughtful about how they take notes on a patient.
For instance, in a recent study titled, "Your Patient Is Now Reading Your Note," from the University of Washington and Harvard Medical School, researchers cautioned that common medical jargon could confuse patients or make them feel judged, and they advised doctors to consider supportive language when writing notes in a patient's chart.
Specifically, researchers cautioned against using alarming medical terms in a patient's record when possible—rather than writing that a patient is experiencing "renal failure," for example, they recommended writing that a patient has "chronic kidney disease." Similarly, they urged providers to be specific when describing a patient's appearance; saying a patient's "shirt was untucked," for instance, would be less hurtful than saying the patient looked "disheveled."
The study also identified some commonly used medical abbreviations that could be problematic and offered alternatives. For example, instead of:
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