A new survey provides more evidence that OpenNotes, the practice of allowing patients to view notes signed by clinicians, is the right thing to do—particularly for engaging patients in their own care and building trust among vulnerable patients with a lower sense of control.

Practices seeking to implement an OpenNotes program of their own should explore the AMA STEPS Forward™ module, “Adopting OpenNotes: Partnering with Patients.” The module outlines the key steps to get started and best practices to prepare clinical staff, patients and caregivers.

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About two-thirds of patients in the survey said they benefited from reading their notes in their medical record, saying it helped them take care of their health, better remember their care plan, feel in control, and be better prepared for physician-office visits.

In contrast, only 3.3% said they were confused by their notes and just 4.8% said reading their notes made them more worried, according to “OpenNotes after 7 years: Patient experiences with ongoing access to their clinicians’ outpatient visit notes,” a study published in the Journal of Medical Internet Research.

The study included survey responses from 23,710 patients or their caregivers from the three organizations that participated in the original OpenNotes pilot test with primary care physicians in 2010–2011: Beth Israel Deaconess Medical Center (BIDMC), the University of Washington Medicine system and the Geisinger system. It was conducted between June and October 2017 using a web-based survey platform.

“In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes,” the report states. “Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit.”

How to address privacy concerns

The authors, however, expressed concern that less than half of clinicians and patients reported actively addressing the shared notes during visits and almost 11.5% said they were “very concerned” about privacy.

The subject of patient privacy is dealt with in the AMA STEPS Forward™ module.

“Have a process in place for patients to privately and securely grant access to their records and visit notes to another person of their choosing,” the module recommends. “If your patient portal allows, let patients know they may have the opportunity to decide which notes can be viewed. Lastly, let patients know that they can retract viewing privileges from a proxy or caregiver at any time.”

The module notes that clinicians can “hide” certain notes from patients at first so that they can be discussed in person later.

While privacy was a concern noted in the survey, more than a third of respondents reported sharing notes with someone else. The study suggests that the notes could be helpful to informal caregivers or for those seeking a second opinion.

It is also suggested that, for patients who have difficulty understanding what their physician told them, family members or others could help interpret or research points made in the notes.

The module recommends these six steps for implementation.

  • Educate your practice. Communicate the benefits of OpenNotes to practice leadership, colleagues, staff, and relevant patient advocacy groups or family advisory councils.
  • Plan what OpenNotes will look like. Decide which departments will share notes and how to handle patient requests to amend them. Assign who will handle patient registration and education.
  • Prepare practice and patients. Describe and share research findings on the benefits of OpenNotes, prepare patient- and clinician-specific FAQs, and promote OpenNotes in practice’s marketing and social media channels.
  • Adapt your documentation style as needed. Avoid jargon and terms that may inadvertently offend patients—such as “SOB” for Shortness Of Breath.”
  • Learn to handle sensitive or challenging topics. Documenting obesity, mental health, substance-use disorder, physical abuse, driving privileges or suspicion of life-threatening illness requires special attention.
  • Collect patient and staff feedback. Add questions about OpenNotes to patient satisfaction surveys. Track patient phone calls and emails before and after OpenNotes implementation.

Learn more about AMA’s transformative practice efforts here.

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