“On April 5, 2021, a landmark change in health care occurred: the 21st Century Cures Act, known as the Cures Rule, took effect, requiring clinicians to give patients real-time access to their health data via patient portals. This was intended to empower patients by granting access to their medical information, enabling them to take an active role in their care, and ultimately improving health outcomes.
However, as with many policy changes, the reality has proven more complicated. While the shift aimed to democratize health care information, its consequences—both for patients and clinicians—are more nuanced than anticipated. The promise of transparency has, in many cases, resulted in confusion, anxiety, and administrative chaos, perhaps doing more harm than good. [..]
Not all test results are created equal, and patients’ ability to interpret them varies. A positive COVID-19 test result is relatively straightforward for most: they understand its implications and can take immediate, self-directed action. In contrast, results involving ambiguous findings—like imaging studies or biopsies—are more challenging. Terms like atypical cells or areas of concern are difficult for the average patient to interpret without clinical guidance. Cancer diagnoses are particularly complex, challenging to interpret, and carry significant implications for treatment decisions like chemotherapy, radiation, or surgery—requiring thoughtful discussion with a trained clinician. For these patients, real-time access to test results without explanation can amplify confusion and distress.
Research highlights the complexity of patient preferences around real-time results. While 95% of patients with non-normal results prefer immediate access,1 this preference changes when results pertain to serious or terminal conditions.2 In such cases, patients often prioritize direct communication with their clinician, valuing context and emotional support over immediacy. [..]
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.
In contrast, receiving such news through an impersonal portal notification can amplify distress. Patients with cancer and their caregivers already experience heightened anxiety and fear of recurrence.5,6 When abnormal results are delivered without sufficient context or guidance, this distress can escalate, compounding the emotional burden and further undermining their well-being. [..]
While patient empowerment is essential, the current implementation of the Cures Rule does not fully account for its emotional toll on patients or the added burden on clinicians. Patients are left to interpret complex medical information without appropriate context, while clinicians must navigate growing workloads that detract from in-person care.”
The authors review potential modifications to the CURES Rule, including tiered results delivery, AI-generated summaries, opt-in for immediate results and dedicated support staff.
Full editorial, DG Rowe and CR Goodwin, JAMA Oncology, 2025.4.10