Patients As Part of the Audience: the Cures Act and Changing Documentation Processes in Palliative Care and Oncology

Outcomes1. After review of mixed methods data, participants will self-report the ability to recognize the impact of Open Notes for documentation work processes, including unintended effects.2. Using the results presented, participants will be able to engage their peers and teams at their own institutions to develop shared best practices around patient access to medical records.Key MessageThe Cures Act Information Blocking Rule mandates that patients have immediate access to their electronic health information. The impact of this policy in cancer care remains unclear. Palliative care and oncology clinicians in our study reported concern for potential patient harm and changes in the way they document. Research on how to optimize “Open Notes” in cancer care is needed.Introduction/ContextIn 2021, the 21st Century Cures Act Information Blocking Rule went into effect. Heralded increasing patient access to health information and improving patient-centered care, the actual implementation of the Rule, often referred to as “Open Notes” is understudied. In particular, the unintended consequences of the Rule, and how they might vary across specialties is unknown.ObjectivesWe aimed to understand how palliative care and oncology clinicians experience Open Notes. Focusing on cancer care, we explored how a field with sensitive information has responded to the Rule and whether the response differs between the two specialties.MethodsWe used a convergent parallel mixed methods design and recruited clinicians from palliative care and oncology settings at a Midwestern NCI-designated comprehensive cancer center. Participants completed electronic surveys and individual, semi-structured interviews. Inductive, qualitative thematic analysis was used along with peer debriefing with team members to reach consensus.ResultsTwenty-nine clinicians participated, who generally reported that the Rule changed their documentation workflow, adding time and/or complexity to the construction of notes. Variation between specialties was found. Palliative care clinicians emphasized concern about documenting prognosis and difficult family dynamics that are traditionally included in their clinical notes, whereas oncology clinicians emphasized concern about patients receiving test results, often before they did, without adequate support for the patient.ConclusionWhile the Rule has been in effect for 2 years, the reality of on-the-ground implementation is largely unknown. Our study found that increased patient access to clinical notes and test results has changed the documentation processes of both palliative care and oncology clinicians. While some positive benefits are reported, serious concerns about unintended patient harm remain.KeywordsAdvocacy / Policy / Regulations Ethical / Legal Aspects of Care