Clinician Perspectives on Open Notes in Oncology Palliative Care: A Mixed-Methods Study

Context

The 21st Century Cures Act Interoperability and Information Blocking Rule (IBR) has the laudable goal of increased transparency in sharing health information with patients and informed decision-making by patients, yet strategies to support IBR implementation are sparse. Without evidence-based guidelines, health systems and palliative care clinicians have been left to navigate implementation of the IBR on their own.

Objectives

We sought to understand clinician perspectives and experiences with the IBR in oncology and palliative care.

Methods

We used a convergent parallel mixed method design with clinician surveys and interviews.

Results

29 clinicians from one institution participated in the study. Three themes emerged from the data: 1) specialty-specific worry about harm; 2) documentation changes in response to the IBR; and 3) sharing notes as a helpful tool. We found that clinicians see benefits and concerns around the IBR. Oncology clinicians worried more about the sensitivity of test results while palliative care clinicians worried more about the sensitivity of information included in documentation of family meetings and of prognostic information.

Conclusion

Findings from our study indicate that clinicians’ experience with the IBR is more nuanced than the initial worry expressed by clinicians in editorials. Additionally, our study shows the importance of capturing specialty-specific experiences with the IBR, as concerns can differ. Future research should continue to examine clinician and organizational practices around implementation of the IBR to identify best practices for maximizing patient and clinician benefit while minimizing unintended harm.