Tips for Real-Time Information Sharing with Patients

Background As Electronic Health Information (EHI) has increased in prominence, the U.S. federal government has set the standard for increasing transparency and transmission of such data. The 2015 Edition Cures Act sought to promote “transparency, modern standards, and enhanced health IT capabilities by fostering innovation in the health care technology ecosystem to deliver better information to patients, clinicians, and other users.”1

In 2016, the 21st Century Cures Act (Cures Act) took additional steps to authorize the Secretary of Health and Human Services to identify and define information blocking and associated exceptions.2 Information blocking is any practice that is “likely to interfere with access, exchange, or use of (EHI).”3 These regulations have led to widespread practices of EHI, such as test results and clinical documentation, being shared with patients in real time. In turn, concerns have arisen regarding when information blocking is appropriate and what ethical issues emergency department (ED) physicians must consider prior to information blocking.

The Cures Act’s information blocking rules identify five specific categories of exceptions in which real-time information sharing can be blocked: preventing harm, privacy, security, infeasibility, and health information technology (IT) performance. Additional institutional exceptions address procedures for fulfilling requests to access EHI, such as fees, licensing, and content and manner exceptions.

The most frequently invoked exception in the ED is preventing harm. Several conditions must be satisfied to justify blocking under this exception, including that the individual blocking the information must hold a “reasonable belief that the practice will substantially reduce a risk of harm, the practice must be no broader than necessary, the practice must be justified by the type of risk, type of harm, and implementation basis, and the practice must allow for a patient’s right to request review of an individualized determination of risk of harm.”4

The foundational principle applicable to real-time EHI sharing is autonomy. Patients’ medical information is fundamentally theirs, as it is about them, for them, considered their property, and entrusted to physicians to generate and use for their clinical care. As such, insofar as access to their information supports and facilitates patients’ understanding of their medical conditions and informs their medical decisions, immediate unrestricted access to their information should be the norm, not the exception.

Not only is this consistent with existing regulations, but to categorically restrict real-time patient access to their health care information, even if undertaken “in their best interest,” can paternalistically limit access to information that is foundational to patient autonomy. And yet, increased, and especially real-time, access can have legitimate adverse effects on patients that must not be overlooked.