“Perhaps the greatest casualty of this system is the loss of human connection that has long been a cornerstone of medicine. Delivering difficult news—like the possibility of metastatic cancer—has always been a deeply emotional moment that demands compassion, empathy, and a steady presence. In-person conversations allow patients to ask questions, process emotions, and receive support.”1
—Unintended Consequences of Patient Portal Access
Since 2021, the 21st Century Cures Act in the US has mandated that patients have prompt access to their electronic health information (EHI) without delay or cost. However, access remains a point of tension for both patients and doctors, with varying degrees of access in different countries.
While patients have access to their charts, they often require interpretation and context to make the notes and reports understandable. These reports are seldom accompanied by glossaries translating terms and jargon.
As I put the finishing touches on this article, I received a text message from a patient. Their general practitioner accessed their CT scan report and forwarded it to them. There were several concerning comments in the report, and her next appointment with her oncologist was scheduled in 6 weeks. The anxiety was overwhelming. Ultimately, she chose to contact her oncologist and was able to obtain an earlier appointment.
Patients feel a sense of empowerment when they are fully informed about their health and medical options. Access to their health records gives them the autonomy to make decisions that align with their preferences and values. It also allows the opportunity to correct errors, omissions, and inaccuracies in the record. Although systems for error correction can be cumbersome and underused, the trend of patients becoming more engaged in their own care is on the rise. Studies have shown that empowered patients are more likely to follow treatment plans and lifestyle recommendations, reinforcing the positive impact of patient access to health records.2
There are challenges, though. The system must safeguard and validate the report produced. The workflow must include physician review, preferably before patients or their caregivers have access. A recent personal experience in which the AI summary mis-gendered me using the “she” pronoun instead of “he” three times made it clear to me that this review doesn’t always happen. As a patient with male breast cancer in addition to lung cancer, this potentially has profound consequences. It also led me to question more closely the accuracy of the rest of the report.
When patients have access to their records, it becomes easier to ensure that multiple providers have a complete picture, allowing for better care, reducing redundancy, and improving continuity.
On the other hand, physicians find that their notes, intended to convey information to other providers and jog their memories, are often misinterpreted. The likely apocryphal story of the patient who was disgusted by their physician referring to them pejoratively as an SOB and who was surprised to learn that it meant “shortness of breath” is one example.
Facilitated access also increases the burden on the physician when an anxious patient has read something in the record and wants to discuss it immediately. The challenge of having a tool intended to convey information to a colleague but used by a patient is considerable.
For lung cancer patients, this is a tough problem. The serious nature of a lung cancer diagnosis means that disease information often results in an emotional impact. The prognostic uncertainty or the rapid course of the disease reflects the reality of lung cancer. Seeing it presented starkly on a chart can be profoundly distressing to a patient who may not be emotionally prepared for such a revelation.
Additionally, there is a significant amount of technical complexity and specialized language associated with lung cancer. Pathology and genomic reports can be confusing or alarming without explanation or proper context. Clinical trials present another challenge. Raw notes considering the options without context may confuse the patient or even undermine their understanding of their care plan.
Thoughts may be recorded in the chart that have not yet been communicated to the patient. Or there may be reflections on a patient’s ability to cope or a caregiver’s stress in the notes. This may feel judgmental or undermine trust if not presented carefully.
Given the seriousness of the disease, the complexity of care, and the psychological implications of the lung cancer diagnosis, , patient chart access must balance open communication with compassionate delivery of information. Medical imaging results are a particular problem for lung cancer patients. Scanxiety is the term that cancer patients have adopted to describe this problem.
Before looking for complex solutions, perhaps a simpler solution is appropriate. Scheduling appointments to more closely align with the the results of imaging scans would reduce anxiety dramatically. Synchronizing visits to scan results is a challenge because it involves different parts of the care system working together. It addresses the challenge directly though, rather than relying on a complex technical solution.
AI presents an exciting opportunity to enhance patient-physician communication. By extracting key points from health records and translating them into plain language, AI could potentially save clinicians time and ensure patients understand their health information. Furthermore, a system could be designed to filter out confusing jargon and details or clinician-to-clinician messages while preserving these key points. Such an approach could foster consistent and clear communication using standard templates to ensure that patients receive information in a format tailored to their needs.
Such templates are customizable to the patient—taking into consideration a patient’s level of health literacy, preferred depth of information, or even a patient’s preferred language.
AI may have a place, but it must be carefully monitored and implemented in the workplace to ensure its effectiveness and minimize potential risks. AI is an assistant; it is not a replacement.
References
- 1. Rowe, Dana G, and C Rory Goodwin. “Unintended Consequences of Patient Portal Access.” JAMA oncology vol. 11,6 (2025): 601-602. doi:10.1001/jamaoncol.2025.0415
- 2. Bailo, L., Guiddi, P., Vergani, L., Marton, G., & Pravettoni, G. (2019). The patient perspective: Investigating patient empowerment enablers and barriers within the oncological care process. Ecancermedicalscience, 13, 912. https://doi.org/10.3332/ecancer.2019.912
