The 21st Century Cures Act’s patient data access rules, designed to improve access, unintentionally led to more patient complaints, particularly due to the immediate digital access to unsettling test results. This study, conducted at a single academic medical center, analyzed unsolicited patient complaints, revealing a rise in post-implementation complaints. The findings challenge earlier data, suggesting clinicians should manage patient expectations and potentially offer opt-in/opt-out options to ensure a positive patient experience within the Act’s provisions.
“Did the 21st Century Cures Act Patient Data Access Rules Have a Negative Impact on Patient Experience?
A recent study conducted at an academic medical center suggests that the patient data access rules introduced under the 21st Century Cures Act may have unintentionally harmed the patient experience. The study, published in JAMA Health Forum, reveals an increase in patient complaints following the implementation of the information blocking rule, a key aspect of the Cures Act.
Specifically, the information blocking rule appears to have made it more common for patients to receive abnormal and potentially distressing test results through the patient portal before having the chance to consult with a healthcare provider. This scenario likely led to heightened anxiety among patients and subsequently contributed to an increase in complaints.
This consequence had been a concern raised by experts when the information blocking rule was introduced. While patient data access is a fundamental right, there were worries about patients viewing abnormal test results digitally, facilitated by the Cures Act, without the guidance of a medical professional. Such results could be emotionally distressing and negatively affect the overall patient experience.
The latest data, focusing on one academic medical center, reinforces these concerns. Researchers assessed the impact of the information blocking rule on patient experience by analyzing unsolicited patient complaints (UPCs), as they provide reliable insights into the nature of the complaints.
The study compared the number of UPCs related to communication, documentation, treatment, and diagnosis (CDTD) in the year before the information blocking rule was implemented (January 2020 to January 20, 2021) with the period more than a year after its implementation (January 21, 2021 to June 30, 2022) at Vanderbilt University Medical Center.
Overall, there were more UPCs after the rule’s implementation (5,473 complaints) compared to before (3,022 complaints). Although the monthly rate of UPCs per 1,000 patient encounters remained unchanged before and after the rule’s implementation, there were specific complaints that directly pointed to changes brought about by the information blocking rule.
“In our qualitative analysis of post-information blocking rule UPCs, themes were identified related to diagnostic results from radiology and pathology reports, documentation in the medical record, anxiety stemming from unexplained medical findings, medical team communication, and unexpected findings in the medical record,” the researchers explained. In essence, many complaints were linked to patients encountering test or lab results that confused them, went unexplained, or caused anxiety.
It’s important to note that this study had limitations, as it was conducted at a single academic medical center, and it did not separate out UPCs solely related to the information blocking rule. Nevertheless, it raises important considerations as healthcare providers continue to navigate the array of patient engagement tools that enhance patient data access.
Furthermore, this study contradicts some previous data regarding patient data access and open notes. A study in March 2021 suggested that patients were generally comfortable with receiving their lab results via the patient portal, even before consulting with their healthcare providers.
This recent study challenges that notion and provides recommendations for clinicians to ensure compliance with the 21st Century Cures Act provisions while still prioritizing a positive patient experience. According to the researchers at Vanderbilt University Medical Center, setting clear expectations with patients is crucial.
For instance, a practice known as precounseling involves communicating to the patient that they should expect to see results in their online portal and encouraging them to wait until their follow-up appointment or phone conversation for interpretation. Additionally, having a mechanism in place within a practice to follow up with patients regarding potentially concerning results could reassure patients that communication will occur if needed.
The team also proposed an option for patients to opt in or opt out of viewing protected health information (PHI) through the patient portal or to only access abnormal test results. However, implementing such programs would require further clarification within the 21st Century Cures Act, as acknowledged by the researchers.”
