The 21st Century Cures Act, signed into law on Dec. 13, 2016, aims to “modernize the U.S. healthcare system by removing regulatory hurdles and obstacles to health information exchange with the goals of facilitating research and development of pharmaceuticals and medical devices to bring innovations to patients faster and more efficiently.” Embedded within the Cures Act is an information-blocking provision that requires healthcare providers to make a core set of clinical data available to patients in a timely manner to allow interoperability and portability of health data. The Information Blocking Rule took effect on April 5th, 2021, and for radiologists this has meant there is essentially no delay in patient access to clinical information, including radiology reports, once entered into the EHR.1
“Since the Cures Act, groups across the country have struggled with reports being released immediately,” says Jay K. Pahade, MD, vice chair for quality and safety at the Yale Department of Radiology and Biomedical Imaging in New Haven, Conn. “Patients have struggled to understand what radiology reports are actually trying to say.” According to Pahade, recent implementation of the Information Blocking Rule has highlighted the need to help patients make sense of their imaging results.
According to Arun Krishnaraj, MD, MPH, chair of the ACR’s Commission on Patient- and Family-Centered Care, prior to the implementation of the Cures Act, many institutions had varying degrees of embargoes regarding radiology reports. “The rationale behind this wasn’t to keep the results of a radiology report from reaching a patient; it was to ensure the radiology report — which is written with the technical jargon that radiologists often use to communicate with their referring providers — could be reviewed by their referring provider in advance of the patient getting the information,” Krishnaraj says. “It was believed that the referring provider would be better equipped to communicate those results and any potential treatment options or additional testing that was needed based on those results.”
The Cures Act changed this, Krishnaraj says — and not necessarily for the better. “The imperative is to improve transparency for patients,” he says, “but the feedback that I’ve gotten from some of our Virginia state chapter leaders is a sense of frustration, even among those who are very patient-centered.”
“For example,” Krishnaraj continues, “a faculty member shared that in his practice, parents were finding out that their kids had brain tumors prior to anybody being able to speak to them. So that’s been a source of not only frustration but also consternation among many radiologists.”
Pahade echoes this concern. “For many patients, this is the first time they’re seeing the report in its entirety, sometimes before the ordering provider has, as opposed to being told what the findings were from their provider,” he says. “That’s led a lot of institutions and groups across the country to struggle with this concept of how to keep our reports directed towards the referring provider, but also allow them to be digestible by a layperson.”
According to Pahade and Krishnaraj, there has been a lack of resources to support radiologists in communicating within the radiology report in terms that patients understand. So, the two set out to develop and distribute a simple translation resource for patients — helping them to understand the basics of a radiology report.
First, Krishnaraj, who serves as co-chair of the RSNA-ACR Public Information Website Committee for RadiologyInfo.org, wrote a piece entitled, “How to Read Your Radiology Report,” which was published on RadiologyInfo.org.
Then, Pahade, who serves as incoming co-chair of the RSNA-ACR Public Information Website Committee for RadiologyInfo.org with Krishnaraj, championed a pilot program at Yale Radiology in which post-visit email communications included a link to the piece on RadiologyInfo.org. “This free resource gives patients a basic overview of the different parts of a report — the introduction, the techniques section, the findings section, the conclusion/impression section — so they can get a little context and better understand their results,” says Pahade.
In October, Yale Radiology and Yale New Haven Health took the pilot a step further and began including the link within their electronic patient portals. According to Pahade, in just two weeks of including the link in EPIC MyChart across the health system, the link garnered over 4,000 hits.
“Our intention is to provide another avenue for patients to access this information,” Pahade says. Many patients are unaware of RadiologyInfo.org, he says, so the more radiologists can get the word out and make it accessible for patients, the better.
To start, Pahade suggests practices explore options available to them to embed links for the patients in their report or patient portal, which many have the capability to do. “Our hope is that by spreading awareness about this resource, other groups could explore doing something similar to help improve basic understanding of radiology reports among our patient populations,” Pahade says. “The longer-term vision for the specialty will be making patient-friendly interpretations of the report more easily available as well.”