You walk into the room of your patient, a 55-year-old woman recovering after a large left frontal IPH. Her course has been complicated by ventilator-associated pneumonia and septic shock. But today, she is improving. She is more awake, her blood pressure is stable, and she is on lower ventilator settings. The update is meant to be one of cautious optimism. Before you can begin, her daughter interrupts, "We saw the MRI report from last night," she says, her voice tight. "It says it could be cancer or an infection. Has she had an infection in her brain this whole time that you weren’t treating?”

You quickly recall the MRI, the results of which were auto-released to the family's portal the previous night. The note about "underlying malignancy or infection cannot be excluded" is standard radiographic language, a list of remote possibilities, not a probable diagnosis. Your team's plan, based on the totality of the clinical picture and a surgical pathology report that was negative for both, was for short-interval repeat imaging to confirm expected evolution.

These crucial facts don't matter in this moment. The family didn't have the pathology report or the benefit of the team's discussion. They had only raw, uninterpretable language for 16 hours. The trust that was slowly built over the last week had evaporated.

The Ethical Mandate and Regulatory Framework

This scenario, in its many forms, has become increasingly common. It is unsettling precisely because it arises from a system many of us ethically support. As the pendulum has swung from clinical paternalism to patient and surrogate autonomy, the open portal is the digital fulfillment of transparency, a promise to treat patients and their families not as passive recipients of care, but as active, essential members of the team.

This shift in practice was codified into federal law with the 21st Century Cures Act. Enacted in 2016, with its information-sharing rules taking full effect in 2021, the act mandates that healthcare providers give patients electronic access to all their health information without delay and without charge. This includes progress notes, lab results, and imaging reports. The goal was to eliminate information blocking and empower patients, fostering a new standard of engagement and data portability. This is backed by data that suggests open access promotes improvement in medication adherence and a better understanding of chronic medical conditions.[1]

The Patient Experience

Studies exploring patient perceptions of open notes reveal a significant majority who feel more in control of their care, better remember their care plan, and are better prepared for appointments. Critically, patients also identify and help correct errors in their records.[1, 2] Yet, a consistent minority of patients report feeling more confused, worried, or even offended by what they read. A chief concern voiced by patients is the anxiety of viewing results before a clinician has had the opportunity to provide context and explanation—the very phenomenon our opening scenario illustrates.[2, 3]

The vast majority of this research comes from the outpatient setting.[2, 4] The inpatient workflow, especially within an ICU, is drastically different. The acuity of illness, the frequency of high-stakes testing, and the central role of surrogate decision-makers—who may be navigating the medical system for the first time—create a unique environment where the relationship with medical information is fundamentally altered. Furthermore, many of our patients are too critically ill to participate in their own care, placing the burden of interpretation squarely on their surrogates. However, limited data do suggest that most patients would want personal health information to be readily available to “a family member of their choosing” in the event of an ICU stay.[5]

Unfiltered access to medical information presents new and complex considerations for those interacting with the healthcare system. The sheer volume of information during an inpatient admission is one concern. There may be dozens of notes and lab values over the course of a day, and it can be nearly impossible for surrogate decision makers to know which tests are important and which shouldn’t cause alarm. A chloride level slightly above normal often presents with the same visual (red exclamation mark) as a critically elevated troponin, while only one value may have actual clinical significance. Additionally, there are also complex reports, typically pathology or imaging studies, that require extensive explanation to be translated into plain language. The timing of when these reports become available can be important, and whether this is a provisional or final report is not always clear.  Notes, especially from consultants pose an additional challenge, at times creating an apparent contradiction between assessments and may require extensive clarification due to normal evolution of care plans.

These nuances converge to place a significant communication burden on the critical care team. Previously clinicians could provide curated updates with the most pertinent information, but often now team members are asked to justify specific medication administrations, or review in depth the complex language in a pathology report, that may have amounted to something benign such as reactive tissue. 

The Necessary Exception: When Transparency Causes Harm

While our default is transparency, the Cures Act includes specific exceptions enabling information blocking. The most relevant is the exception to prevent harm, which allows a clinician to withhold information if they have a reasonable belief that its release is likely to cause physical or emotional harm to the patient or another person. Consider an ethics consultation regarding a surrogate whose decisions may be contrary to the patient's best interests. Releasing a note detailing this conflict to that surrogate could sabotage care or endanger the patient. In these complex cases, exercising the "preventing harm" exception is an ethical obligation rooted in our primary duty of non-maleficence.

The Path Forward: Adapting Our Practice to a New Reality

Navigating this new terrain requires us to adapt our clinical practices. The solution is not to roll back access, but to re-architect the communication that surrounds it. This begins with moving from a reactive posture of damage control to a proactive model of expectation setting. Integrating a discussion about the patient portal and the flow of information into our initial family meetings is a critical first step. Setting clear expectations for when families can anticipate face-to-face updates can pre-emptively address the anxiety that grows in silence.

Beyond managing the timing of disclosure, we must also acknowledge that our documentation is now intended for a dual audience. We must increasingly write our notes with the awareness that patients and families are our secondary readers. This does not mean censoring clinical thought or omitting a necessary differential diagnosis, but it does mean favoring clarity and being mindful of the language we use to frame our assessments.

This practice of open notes on occasion creates significant narrative dissonance in the complex, interdisciplinary ICU environment. Consultants’ formal recommendations, documented in the medical record, may contrast with the actions of the primary ICU team, who integrate the recommendations with the most current data and a nuanced understanding of patient’s goals of care. This lends itself to a gap between a static medical record and the dynamic reality of critical care. We must acknowledge, however, that in the era of open notes, this discrepancy between documented recommendations and the executed care plan can place the clinical team in a precarious ethical and medico-legal position, potentially eroding patient and family trust. While concrete solutions are admittedly lacking, an emphasis on transparency in decision making and prioritization of consensus building, may help bridge this gap. 

Conclusion

The 21st Century Cures Act has successfully placed critical information into our patients' hands, upholding the principle of autonomy. Our task as clinicians now is to manage the clinical and emotional consequences of this new immediacy. By combining proactive communication with more mindful documentation, we can mitigate the unintended harms of raw data. This honors the core intent of the Cures Act: to create a partnership built on shared understanding, not just shared data.