Are there best practices or data regarding the use of open notes among oncology patients?

The 21st Century Cures Act regulation (effective April 2021) required that clinical notes such as consult and office notes be shared with patients, e.g. “open notes.” In general, surveys of patients with cancer and their clinicians suggest that open notes are viewed favorably (Salmi et al., PMID 33035494) although, less is known about what changes as a result of patients with cancer accessing cancer clinician notes and clinicians are generally less positive than patients with cancer about open notes.

We don’t know how often patients with cancer access notes written by their cancer clinicians, although this likely varies by population. Anecdote suggests that patients may do this more often for cancer than for other health conditions. Data does suggest that is it relatively uncommon for patients to contact their clinician about something that they read in a note (Bell et al., PMID 32515797). However, it can be challenging to create a short note that is informative for 3 potential audiences (e.g. the patient, the payor, other clinician colleagues). Most clinicians report that they have not substantially changed their notes in response to open notes.

More data is needed to understand the outcomes impacted by open notes for patients with cancer, such as patient access rates, impact on patient understanding, trust and satisfaction with the cancer care team, as well as behavior changes.

Heme/Onc Open Notes Best Practices:

• Document in a timely manner.
• Avoid confusing abbreviations. EHRs often have tools that can autocorrect abbreviations like “fu” to “follow-up” (tricks can be used to prevent also updating 5FU to 5follow-up!) Check with your healthcare system about setting these up.
• Use patient-friendly/respectful language. E.g. replace the patient “claims” with the patient “states” or “notes.” Check your templates and phrases periodically for language. If you dictate or use a scribe, consider how you might shift your language. See Fernández et al., PMID 33528782 for more.
• Encourage your healthcare system to set appropriate standards.
  • Systems should collect and also update history and symptoms directly from patients on a regular basis, since this information is often used in notes – outdated information can be perceived as an error.
  • Create workflows for addressing patient inquiries. Avoid directing all such inquiries toward clinicians to change or clarify the documentation although clinicians should be made aware of requests. Correct any errors that may impact care promptly.
• Document important conversations. If you discuss intent of treatment and disease status with a patient, document this using keywords that you employed during the conversation, “e.g. we discussed metastatic breast cancer as treatable but not curable.” Consider partnership-building language such as “we discussed” rather than “I told the patient.”
• Be thoughtful about sensitive information. You may want to check with a patient about including potential sensitive information in a note, especially if you are not sure whether the patient shares access with family/caregivers.

Shaverdian et al., PMID 30342179.

This study was done on radiation oncology patients.