The latest in a line of legislation designed to promote health information technology interoperability and reduce information blocking, the 21st Century Cures Act began implementation in 2020. Since then, patients, nurses, and the entire healthcare team have appreciated benefits while also confronting challenges—namely with patients having immediate access to their health information and results before their nurse or other healthcare professional can explain the results in context.

In an article in the February 2024 issue of the Clinical Journal of Oncology Nursing (CJON), three oncology nurse advocates explored the emerging evidence about the act’s implications for patients, nurses, and the healthcare system and advised how nurses can advocate to their legislators and government agencies about the challenges and concerns they and their patients are facing.

Patient Impact

The U.S. Department of Health and Human Service’s Office of the National Coordinator for Health IT (ONC) is leading the act’s implementation. According to ONC, the act allows patients to access shared health information, such as clinical notes, diagnostic imaging results, and laboratory results.

In their literature review for the CJON article, Simmons et al. found that overall, sharing health information with patients has benefits, including:

  • Improving accuracy and safety of health care, treatment adherence, and caregiver support
  • Empowering patients with greater control and confidence in managing their own health
  • Increasing their comprehension of information that could be confusing or overwhelming
  • Boosting trust in the healthcare team

However, some of the downfalls included:

  • Increased patient anxiety or anger
  • Discomfort with complex reports or notes

Healthcare Team Impact

Simmons et al. said that the evidence showed wide variations in the healthcare team’s response to the practice change, although most healthcare professionals reported believing it “is a good idea.” However, “RNs tended to have more negative or neutral opinions about the release of notes, highlighting the need to understand how the mandate of preventing information blocking has affected specific roles in the clinical setting,” Simmons et al. said.

Concerns increased in the oncology setting; Simmons et al. cited two specific examples from the literature demonstrating the potential for negative impacts on patient and family well-being and the patient-provider relationship:

  • A patient had the opportunity to view a pathology result upon its immediate release, which revealed a cancer diagnosis, before the provider could have a discussion with them. “The patient was angry with the healthcare team for not having communicated the results,” Simmons et al. said.
  • A caregiver received and misunderstood the results from a follow-up imaging scan prior to the scheduled office visit and believed the cancer had progressed, leading to overwhelming anxiety and distress. The physician was able to communicate that the scan showed that the cancer was stable during the office visit, “but the caregiver spent several days in a state of unnecessary worry,” Simmons et al. said.

Implications for Practice

Simmons et al. suggested that healthcare professionals consider the possibility that patients and caregivers will be reading their documentation notes and offered several writing tips:

  • Use clear and concise language that is supportive and encouraging.
  • Set timing and communication expectations.
  • Understand the organizational process for amending notes.
  • Encourage patients to read the notes to reinforce their understanding of key information.

The authors added that nurses can educate patients on appropriate boundaries, such as, “You likely will see sensitive results prior to the provider, but the results will be discussed within an appropriate time, even if not immediately, and that your questions and concerns will be addressed.”

Opportunities for Advocacy

“Oncology nurses are encouraged to share their challenges with local legislators,” Simmons et al. concluded. “In addition, oncology nurses can share specific patient experiences directly with the ONC through their Health IT Feedback and Inquiry Portal. With the ability to directly contact legislators and submit comments to the ONC, issues specific to the care of patients with cancer regarding the timing of releasing sensitive results may be recognized and heard.”

Find your local legislators in the ONS Action Center.