Lifting The Veil on Affected person Data

Health Literacy: A Provider Problem, Too

On December 13, 2016, Congress signed the 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 requires health groups to 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 get more robust information on their EHR portal," said Dan Golder, DDS, 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-specialties group of Dr. Chenven is set up to communicate with patients after the visit. "We are structured to give the patient 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 laboratory 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 went into effect. It began as a study of 105 primary care physicians and 19,000 patients in healthcare systems in rural Pennsylvania, Seattle, and Boston. Since then, 250 healthcare systems have started sharing clinical notes with their patients.

In a 2019 study published in the Annals of Internal Medicine, patients who read their clinical notes told study authors that they better understood what their medical conditions were about, were better off visiting the office prepared and paid more attention to how they maintained their patients' health and adhered more to their prescribed medication.

Cancer patients have particularly benefited. In a study that appeared in Cell, the study's authors analyzed surveys conducted by clinicians and patients. The authors found that 70% of doctors treating cancer were in favor of sharing notes, and nearly 100% of patients agreed.

How to access records

First, patients must be given access, which Dr. Golder may already be there. "Many patients already have access to a patient portal and can access a good amount of their information there," he said. Patients with portal access who now have improved access due to the information blocking rules will receive more detailed information, including doctor notes and test results.

Patients without portal access can ask their provider how to make an inquiry. Some providers have forms online, but others "call the health facility and ask to speak to the health information department," said Dr. Danika Brinda, President and CEO of TriPoint Healthcare Solutions, a healthcare and patient privacy consultancy.

After requesting records, Dr. Brinda gave the seller 30 days to fulfill the request. What a patient discovers in their records – certain terms or confusing language or acronyms – could easily be misinterpreted, said Dr. Brinda. "This is a challenge we face. How do we make sure the patient really understands this (information) when we become more transparent?"

It is a challenge that Dr. Golder believes it 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 are also allowed to request that they 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 vendor's right 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.

Dr. 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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