The release of clinical information under the 21st century cures act and implications for patients with cancer: a narrative review.

BACKGROUND AND

OBJECTIVE

The 21st Century Cures Act mandates patient access to electronic health record (EHR) information, including test results, and prohibits practices that interfere with that access. Many health systems operationalized this through patient portals, enhancing transparency and patient engagement. This narrative review synthesizes emerging literature on patients' and clinicians' experiences with portal-based access to oncology test results.

METHODS

We conducted a narrative review in accordance with the Scale for the Assessment of Narrative Review Articles (SANRA), performing a non-systematic literature search of PubMed/MEDLINE and Google Scholar for studies published between January 2021 and December 2025. We included qualitative, quantitative, and mixed-methods studies, as well as policy analyses, using non-empirical sources for contextualization rather than as primary evidence, with emphasis on high-stakes results and context relevant to metastatic or advanced cancer populations.

KEY CONTENT AND FINDINGS: Twenty articles were included. Patients consistently valued timely access to their health information and reported increased transparency and engagement, though preferences varied by test type. Evidence regarding potential harms was mixed: some patients reported distress or confusion when accessing complex results, while others reported no changes or felt better prepared for clinical encounters. Clinicians concerns regarding patient distress, portal messaging, and workflow disruption were reported in surveys and qualitative studies, although empirical findings were not uniform across studies. Direct evidence focused specifically on patients with metastatic cancer was limited, with only one study explicitly examining this group.

CONCLUSIONS

The available literature describes both potential benefits and challenges associated with expanded electronic access to oncology test results. Evidence specific to patients with advanced cancer remains sparse, highlighting an important gap and the need for further research to inform patient-centered disclosure practices in oncology.