On December 13, 2016, Congress signed the 21st Century Cures Act, designed to accelerate the development of medical devices and bring new medical advances into the hands of patients more quickly and efficiently.

The Therapeutic Products Act also gave patients control over their health information. To this end, the law mandates that health groups must give patients electronic access to test results, pathology and imaging reports, and their doctor’s clinical notes. This “Open Note” mandate is expected to come into force on April 5, 2021.

“Patients will typically have more robust information on their EHR portal,” said Dan Golder, principal at Impact Advisors, a healthcare consultancy. “This includes clinical notes (such as progress or procedural notes) that many organizations have traditionally not shared with patients.”

This will improve transparency for patients everywhere, said Dr. Norman H. Chenven, founding CEO of the Austin Regional Clinic and vice chairman of the Council of Accountable Physicians Practice (CAPP). The multi-specialty group of Dr. Chenven is set up to communicate with patients after the visit. “We’re structured to give patients a summary most of the time after the visit.” What’s included: a summary of the visit, including medical recommendations.

Patients, he said, have had online access to notes and lab results in many practices for some time. He added notes to the doctor and said, “[won’t be a terrible change for our world.”

What patients say

OpenNotes began in 2010, a few years before the Cures Act was signed into law. It began as a study with 105 primary care physicians and 19,000 patients in healthcare systems in rural Pennsylvania, Seattle and Boston. Since then, 250 health systems have started sharing clinical notes with their patients. 

In a 2019 study published in the Annals of Internal Medicine, those patients who read their clinical notes told the study authors that they understood better what their medical conditions were about,  prepared themselves better for an office visit, were more mindful of how they maintained their health and were more adherent to their prescribed medications. 

Cancer patients have especially benefited. In a study that appeared in Cell, the study authors analyzed surveys completed by clinicians and patients. The authors noted 70% of the physicians who treated cancer were in favor of sharing notes, and nearly 100% of patients felt the same.

How to access records

First, patients need to gain access, which Mr. Golder said may already be in place. “Many patients already have access to a patient portal, and can access a good chunk of their information there,” he said.  Now with improved access because of the Information Blocking rules, patients with portal access will see more detailed information, including doctor’s notes and test results.

For patients without portal access, they can ask their provider how to make a request. Some providers have online forms, but for others, “call the healthcare facility and ask to speak to the health information department,” said Danika Brinda, MD, president and CEO of TriPoint Healthcare Solutions, a healthcare and patient privacy consulting firm. 

Once a records request has been made, Dr. Brinda said providers have 30 days to fulfill the request. What a patient discovers in his records – specific terms or confusing language or acronyms – could be misinterpreted easily, said Dr. Brinda. “That’s one challenge we face. As we become more transparent, how do we make sure the patient truly understands that [information]? “

It’s a challenge that Mr. Golder believes will benefit health care as a whole. “Patients will have time to look around, read, digest, and then have the dialogue with their physicians that is so important in developing a relationship with a provider and understanding your care.”

Dr. Brinda suggested that patients seek help interpreting their notes, possibly from a nurse or other doctor who understands the terminology. Vendors, she said, can provide clarity on more confusing documentation.

Patient rights

What healthcare providers cannot do is deny access or postpone requesting records indefinitely. “There can be no barriers for patients to gain access,” said Dr. Brinda.

That starts with the request itself. Brinda, health organizations cannot place undue burden on patients trying to access her records. Providing application forms online or by mail should be standard and patients should have the right to choose how to receive their records.

Patients may also request to receive the information in an unencrypted form, said Dr. Brinda. The provider has the right to ask the patient to make the request in writing.

When a patient sees a mistake or disagrees with an aspect in the notes, Dr. Brinda that the patient can request a change. “The right of the provider is to review this request and approve or deny it.”

“I think it’s a good thing overall,” said Dr. Chenven on patients’ ability to see the full medical profile.

Mr. Golder agreed. “In the future, people should really focus on being able to communicate better because that’s the win-win situation.”

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