A study by City of Hope National Cancer Center highlights the impact of the 21st Century Cures Act’s patient data access rules. Prompt access to lab results via the patient portal reduces patient anxiety, but discussing results with clinicians further alleviates stress. The research supports the preference of many patients to consult with their doctors before accessing lab and imaging results. Meanwhile, some patients value immediate access, especially in non-cancer cases, as shown in a survey by OpenNotes. Both studies raise important considerations regarding patient data access under the Cures Act.
Patients express a desire for physician consultation in accordance with the Cures Act’s patient data access rules.
A recent study published in the journal Radiation Oncology sheds light on the impact of the 21st Century Cures Act’s provisions mandating immediate patient data access and access to lab results, particularly among cancer patients. Conducted by researchers at the City of Hope National Cancer Center, the study found that patients experience reduced stress levels when they can access their lab and imaging results promptly through the patient portal.
However, the study revealed that stress levels decrease even further when patients discuss these results with their healthcare providers.
Under the 21st Century Cures Act’s information blocking rule, healthcare providers are now required to make patient data immediately available through digital tools like the patient portal. This encompasses data such as lab and imaging results, raising questions about how patients will fare when interpreting these results without the guidance of a clinician.
Critics have argued that providing access to lab and imaging results without clinician counsel could confuse patients, especially those who are not well-versed in medical terminology, or exacerbate their already heightened stress levels. Some have suggested that lab results should become available to patients only after they’ve had the opportunity to review them with their healthcare providers.
The latest data both supports and refutes these arguments.
The researchers surveyed cancer patients and their caregivers, who often receive potentially distressing news through lab and imaging results, regarding their anxiety levels before the tests, immediately after receiving the results, and after discussing the results with their oncologists.
Naturally, anxiety was prevalent among patients before undergoing their scans, with 33 percent reporting high anxiety.
The ability to see their lab results immediately provided some relief, reducing the number of individuals reporting high anxiety after receiving their results but before discussing them with a doctor to 20 percent.
However, the data demonstrated that consulting with a doctor provided even greater relief. The number of people reporting high anxiety after discussing lab and imaging results with a doctor decreased to 13 percent.
These findings suggest that while it is beneficial for patients to have access to their lab and imaging results, it is even more reassuring for them to discuss the results with their healthcare providers. In fact, a significant majority of patients expressed a preference for waiting to see their results until they could consult with their doctors. Only 18.5 percent of patients wanted to access their results before receiving their doctors’ guidance, and just 20 percent believed it would be helpful to have early access to them.
These figures align with recent findings indicating that patients generally prefer and require their clinicians to discuss lab results with them in conjunction with accessing the results in the patient portal. In a recent article in the JAMA Health Forum, researchers from Vanderbilt University Medical Center reported an increase in unsolicited patient complaints after the Cures Act came into effect.
The researchers explained that these complaints often 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.
In other words, many patients were dissatisfied with viewing test or lab results that confused them, seemed unexplained, or caused them anxiety.
The VUMC researchers recommended that providers set clear expectations for patients undergoing lab tests on how they can access results via the patient portal. Clinicians may advise patients to wait until they can review the results with their providers, and clinic coordinators may schedule follow-up calls with clinicians shortly after abnormal results are available.
On the other hand, some data suggests that early access to patient data is not a significant concern for most patients.
In March 2023, OpenNotes reported that 96 percent of surveyed patients want to view their test results as soon as possible through the patient portal. Less than 10 percent of the surveyed population expressed increased worries when viewing test results before being contacted by a healthcare professional. However, when focusing on individuals receiving abnormal test results, that figure rose to 16.5 percent.
It’s important to note that one potential distinction between these studies is the survey population. The OpenNotes study examined a general patient population, irrespective of their disease state, while the City of Hope study specifically focused on people with cancer who might be receiving more sensitive or serious test results. However, neither of these studies delved into these differences in detail.
