When Bad News Comes Through the Portal: Strengthening Trust and Guiding Patients When They Receive Bad Results Before Their Clinicians

Abstract

Communication in oncology was challenging long before the emergence of the US 21st Century Cures Act. Before 2021, a growing body of evidence had demonstrated the benefits of patients' access to and review of the clinical notes in their charts (open notes); however, studies examining the benefits of immediate access to test results were scarce until the implementation of the Cures Act's Information Blocking Rule. Individuals grappling with cancer today now possess immediate access to their laboratory results, imaging scans, diagnostic tests, and progress notes as mandated by law. To many clinicians, the implementation of the Cures Act felt sudden and presented new challenges and concerns for oncologists surrounding patients' potential emotional reactions to medical notes or lack of control over the careful delivery of potentially life-changing information. Despite data that show most patients want immediate access to information in their records before it is communicated directly by a health care professional, surveys of oncologists showed trepidation. In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.