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

Ethical Considerations

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.

Many of the arguments for restricting patients’ real-time EHI access are based on anecdotal concerns. These include accounts of patients receiving abnormal but benign results and suffering unnecessary emotional distress (e.g., an elevated troponin level that is at a patient’s previously established baseline); a concern that access to results from triage protocols could cause a patient to leave before being evaluated and treated (e.g., receiving a normal troponin result while waiting and leaving before a physician is able to interpret the results, recommend further testing or stratify risk); or patients becoming frustrated with the pace of their care once knowing their results are available (e.g., knowing a troponin result, but not realizing they are awaiting a cardiology consultation or repeat troponin). Although these scenarios have likely been encountered by many emergency physicians, there is not robust empirical evidence that real-time EHI sharing is causing systemic harm–or more harm than good.

The existing studies on the topic do not demonstrate any significant adverse patient effects. Outpatient studies have shown that approximately 20 percent of patients viewed their results expeditiously.⁵ Additionally, when patients were provided access, patient complaints were infrequent.⁶

In one systematic review of literature, evidence overwhelmingly showed benefits of real-time sharing, including increased “reassurance, reduced anxiety, positive impact on consultations, better doctor–patient relationship, and increased awareness and adherence to medications.”⁷ With most studies occurring in the outpatient setting, anecdotal concerns of adverse patient effects of real-time information sharing in the ED require focused investigation in the ED setting.

Two established areas of concern identified in the literature require ethical consideration: confidentiality and justice. With EHI available through online portals, some of which include real-time sharing with mobile notifications, security and confidentiality are of concern.⁷ Domestic partners, parents, or other individuals who have access to a patient’s electronic devices may gain access to EHI before a patient can restrict others’ access if desired. Ensuring safeguards for confidentiality will be critical to minimizing harms to patients and supporting their right to control the distribution of their health information.

There are also concerns around equitable access to EHI. Socioeconomically disadvantaged populations may disproportionately lack means to access their EHI.⁵

If the primacy of patient autonomy dictates extreme deference to real-time EHI sharing, to permit a system that systematically disadvantages certain socio-demographic groups undermines the principle of justice. Further work in real-time EHI sharing should ensure fair and equal access to uphold this principle.

Recommendations, Best Practices

Once real-time information sharing is recognized as fundamentally good with limited exceptions, further efforts should maximize patient benefits.

First, information for patients about how to find their records must be developed and disseminated. Additionally, a disclaimer notice should be tied to uncounseled results being released. These practices seek to support patients’ autonomy to access the information while informing them of potential harms of doing so.

Both instructions on access and anticipatory guidance can be provided via multiple avenues, such as inclusion in discharge instructions, notification via email, provider discussion with patients prior to discharge, and notifications or alerts on the patient portal itself.

For patients who are elderly, disabled, or economically disadvantaged, who may have more difficulty accessing real-time information, it is important to identify a process by which they may register to receive such information if desired. These practices will reduce inequities in the current landscape of EHI sharing.

Training opportunities for documentation best practices should be employed. Recognizing that patients will read the record immediately should promote tactful wording by the physician in the medical note. Specifically, jargon and abbreviations should be avoided, especially ones that can be misinterpreted (e.g., SOB), and alternative value-neutral descriptors should be used (e.g., “substance use disorder”
rather than “drug addict”).

Finally, in accordance with the paucity of empiric data demonstrating harms and the ethical considerations outlined, exceptions to real-time EHI sharing should be exceedingly rare. However, there should be a formalized process within the current documentation workflow for physicians to opt out of real-time release, which could be as simple as a toggle at the top of the notes/orders section. Defaulting to the automatic release of EHI should be maintained and exceptions should adhere to regulatory criteria.

Dr. Bookman is professor and vice chair of operations, department of emergency medicine at the University of Colorado School of Medicine and senior director of informatics for UCHealth, in Aurora, Colo.

Dr. Bissmeyer is a senior resident at Orange Park Hospital in Jacksonville, Fla.

Dr. Denley is a first-year attending at Ochsner Health in New Orleans, where he completed a year as chief resident, and current EMRA President.

Dr. Sauder is an emergency physician working in Kettering, Ohio.

Dr. Traill is a clinical assistant professor at Michigan State University, in Ann Arbor, Mich.

Dr. Kluesner is the associate program director of the Iowa Methodist EM Residency Program working in a community-based nonprofit in Des Moines, Iowa.

References

1. Office of the National Coordinator for Health Information Technology. 2015 Edition Cures Update fact sheet. HealthIT.gov website. Accessed: October 11, 2023.
2. U.S. Congress. Public law 114–255—Dec. 13, 2016. 130 stat. 1033, section 4004. U.S. Congress website. Published December 16, 2016. Accessed October 11, 2023.
3. U.S. Department of Health and Human Services. 45 CFR Part 171. Code of federal regulations eCFR website. Published May 1, 2020. Accessed October 11, 2023.
4. U.S. Department of Health and Human Services. 45 CFR Part 171.200 Information blocking exceptions. ONS Health IT website. Accessed October 11, 2023.
5. Foster B, Krasowski M. The use of an electronic health record patient portal to access diagnostic test results by emergency patients at an academic medical center: Retrospective study. J Med Internet Res. 2019;21(6):e13791.
6. van Kuppenveld SI, van Os-Medendorp H, Am Tiemessen N, et al. Real-time access to electronic health record via a patient portal: Is it harmful? A retrospective mixed methods observational study. J Med Internet Res. 2020;22(2):e13622.
7. Tapuria A, Porat T, Kalra D, et al. Impact of patient access to their electronic health record: systemic review. Inform Health Soc Care. 2021;46(2):194-204.