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What Providers Must Know About Patient Access to Clinical Notes

The patient access to clinical notes mandate in the 21st Century Cures Act will go into effect on November 2, 2020.

Editor's Note: The ONC has since extended the deadline for providing patient access to clinical notes to April 5, 2021.

As part of the 21st Century Cures Act, the federal government will soon mandate that all healthcare providers offer patient access to clinical notes.

The portion of the law, which goes into effect on November 2, 2020, comes as a part of the final rules on information blocking released by the Office of the National Coordinator for Health IT in the first half of March. Specifically, the Final Rule outlaws any kind of information blocking, and this includes blocking of patient data access.

Starting in the beginning of November, healthcare organizations must provide patients access to their electronic health data, free of charge. This requirement is different from those elucidated in the HIPAA Privacy Rule because it requires patients to have immediate access to their digital data, such as via a patient portal.

On the whole, providers must be able to make eight types of patient data available to all patients, free of charge:

  • Consultation notes
  • Discharge summary notes
  • History and physical
  • Imaging narratives
  • Laboratory report narratives
  • Pathology report narratives
  • Procedure notes
  • Progress notes

Providers may still withhold psychotherapy notes or notes the provider has reasonable assumption could be used in a civil or criminal court case or administrative proceeding.

There are some exceptions to the patient data access rules, but by and large, all healthcare providers, health information exchanges, and certified health IT developers must comply with the law.

This facet of the 21st Century Cures Act is important because it includes not just patient data access—which in some cases could start and end with a copy of one’s health records—but also clinical notes. In essence, the Cures Act is putting into action widespread OpenNotes, the health data philosophy that all patients should have access to the notes their clinicians take during health encounters.

“Over the past decade, this practice innovation—known as ‘open notes’— has spread widely, and today more than 50 million patients in the United States are offered access to their clinical notes,” OpenNotes leaders wrote in the Annals of Internal Medicine.

The open notes philosophy has been around for over 50 years. In that time, the philosophy has moved from seeing strong provider resistance to proving marked improvements in patient engagement and care quality.

Providers reticent to engage in the OpenNotes philosophy have posited that clinician notes could be confusing for patients or damage the patient-provider relationship. These are the actual notes from the provider, after all, not standardized documentation within the EHR.

That was the experience for UCHealth Chief Medical Information Officer CT Lin, MD, FACP, when he tried to launch his own version of OpenNotes in his health system. After introducing a system called System Providing Patients Access to Records Online (SPARRO), Lin saw first-hand the apprehensions clinicians had with offering patient data access.

“We had seven doctors in this cardiology practice, four of whom said ‘I don’t know if this is a good idea,’” Lin recalled in an interview with PatientEngagementHIT.com.

“’Progress notes are for doctors,’” Lin continued. “’Terminology is hard to understand. Do you not think we’re working hard enough already? Do you want patients to call us with terminology questions? Will they be offended when we call them obese? Or if we say they’re smoking or they smelled like smoke? This is going to be terrible,’ they said.”

However, research has slowly chipped away at that notion. After UC Health providers had good experiences with OpenNotes—and providers saw similar evidence across the country—it became clear that OpenNotes could be helpful.

In 2020, research showed that 96 percent of patients accessing their open notes understood the notes. Of the 4 percent of patients who only understood some or little of their clinical notes, most of them sought out help. Thirty-five percent said they searched for information on the internet, while 27 percent asked their clinicians questions and 7 percent queried their family or friends.

“Clinicians who worry about being inundated by questions from patients should find the results of this study encouraging,” Suzanne Leveille, RN, PhD, lead author of the study and Professor of Nursing in the College of Nursing and Health Sciences at the University of Massachusetts, said in a statement. “We wanted to understand patients’ experiences in reading their notes, and it turns out nearly all patients said they understood the notes, and many offered helpful ideas that would make them more meaningful for patients.”

What’s more, data has shown patient access to clinician notes can improve patient safety. Patients who viewed their clinician notes have been able to report potential note errors, which in some cases have resulted in actual changes to the notes.

OpenNotes has also won over the hearts and minds of the providers who write the notes. In 2020 data published in JAMA Network Open, OpenNotes researchers reported that 74 percent of providers approve of the practice. Sixty-one percent said they would recommend their colleagues adopt the practice, as well.

To be fair, OpenNotes did come with a little bit of added burden for providers. Thirty-seven percent said they spent more time documenting once they adopted OpenNotes, although the study did not indicate how much more time.

This was likely because clinicians augmented their notes to make them more palatable or understandable for patients. Providers were most likely to say they removed language they thought could be perceived as judgmental.

Nevertheless, provider respondents agreed OpenNotes was a good patient engagement tool.

Twenty-five percent of clinician respondents said they encouraged their patients to access the open access clinical notes, and many are seeing the effects. Eighteen percent of providers said their patients mentioned the notes during a later clinical encounter, while 14 percent said their patients had called the office with a question about clinical notes.

As all providers nationwide are now subject to adhering to the open notes philosophy, it will be important for them to understand how patient access to clinical notes can impact engagement. Although providers do need to write notes in clear, concise, and perhaps less judgmental language, this open access does have the power to boost patient activation in care.

Correction 12/02/2020: A previous version of this article indicated patient access to clinical notes as a part of the CMS Interoperability Rule. This article has been updated to reflect that those requirements came as part of the ONC Informaction Blocking Rule.

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