Information Transparency with Immediate Release: Oncology Clinician and Patient Perceptions

Abstract

Abstract Introduction: As part of the 21st Century Cures Act, beginning April 2021, electronic health information (EHI) must be immediately released to patients. This change poses challenges for both oncology clinicians and patients whose priorities and experiences may differ. In this study, we sought to evaluate clinician and patient perspectives regarding the immediate release of EHI. Methods: Semi-structured interviews were conducted with a group of 8 clinicians and 12 patients using purposeful sampling to capture a diverse array of participants. Open-ended questions explored clinicians’ and patients’ perceptions of the immediate release of patient health information and how they adjusted to this change. Interviews were recorded, transcribed verbatim, and de-identified. Transcripts were thematically analyzed, reviewed to develop a coding rubric, and independently coded until thematic saturation was achieved. Results: Forty unique codes were identified, which were then mapped to 10 themes. These themes included Interpreting Results, Strategies for Patient Interaction, Patient Experiences, Communication Strategies, and Provider Limitations, among others. Clinicians and patients demonstrated varying levels of confidence in patient understanding of results and differences in perceived patient distress emphasizing the impersonal nature of electronic release and necessity for therapeutic clinician-patient communication. Unique recommendations to support patients receiving complex results reports were found. Conclusions: Clinicians and patients have varying insights on the role of immediate release of medical information in cancer care. Understanding these perspectives may be helpful for devising ways to improve communication between clinicians and patients and in developing patient-centered tools (glossaries, summary pages, additional resources, and more) to aid in understanding complex medical information.