Open notes: A qualitative study of oncology patients’ experiences reading their cancer care notes.
Kayastha, N; Pollak, KI; LeBlanc, TW
Published in: Journal of Clinical Oncology
33 Background: Electronic medical record systems and patient portals increasingly allow patients direct access to their clinicians’ notes.While most believe that open notes benefit patients, some suggest negative consequences. Little is known about cancer patients’ experiences reading their own medical records outside of the primary care setting. We aimed to describe the experiences of patients with advanced cancer who read their own cancer care notes. Methods: We recruited 20 adult patients with metastatic or incurable cancer who were receiving active cancer treatment to participate in semi-structured qualitative interviews. The interview included four segments: assessing patients' overall experience reading notes, discussing how notes affected their cancer care experiences, having them read a real note with the interviewer, and making suggestions for improving notes. We used a constant comparison approach to analyze the qualitative data. Results: Four main themes emerged; patients reported that notes: (a) increased comprehension, (b) ameliorated uncertainty, relieved anxiety, and facilitated control, (c) increased trust, and (d) for a subset, increased anxiety. Patients described increased comprehension, as notes refreshed their memory and clarified their understanding of visits. Notes addressed uncertainty and relieved anxiety, in part because enhanced comprehension mitigated the unfamiliarity of cancer. They facilitated control, empowering patients to ask more questions to clinicians. The transparency of notes also increased the trust patients have in their clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients consistently identified medical jargon and repetition in notes as areas for improvement. Conclusions: Our findings suggest that most patients felt that reading notes improved their care experiences. A small subset experienced increased distress from “open notes.” As reading notes becomes a routine part of the patient experience, it is important for physicians to elicit and address concerns that arise from the notes, further engaging patients in their care.
