Patients Want Doc Counsel Under Cures Act Patient Data Access Rules

New data in the journal Radiation Oncology is providing more insights into how the 21st Century Cures Act’s provision mandating immediate patient data access and access to lab results impacts patients and their caregivers, this time zeroing in on those with cancer.

The study, completed by researchers at City of Hope National Cancer Center, found that patient stress goes down when folks can look at their lab and imaging results immediately via the patient portal.

However, stress goes down even further after patients discuss results with their providers.

Under the information blocking rule in the 21st Century Cures Act, healthcare providers must now make patient data access immediately available via digital tools like the patient portal. This rule encompasses data like lab and imaging results, calling into question how patients will fare consuming these results without the consult of a clinician.

Some critics have indicated that access to lab and imaging results without clinician counsel could confuse patients who are not experts in medical jargon or heighten already-high stress levels. Others have suggested that lab results should become available once patients are able to view them with providers.

This latest data both confirms and dispels those arguments, respectively.

The researchers surveyed cancer patients and their caregivers, for whom lab and imaging results may carry exceptionally stressful news, about their anxiety levels before the test, directly after receiving results, and after discussing results with their oncologists.

Naturally, anxiety was common before patients underwent their scans, with 33 percent of respondents reporting high anxiety.

Being able to see their lab results right away helped; the number of folks reporting high anxiety directly after getting their results but before reviewing with a doctor went down to 20 percent.

But getting the counsel of a doctor helped even further, the data showed. The number of people reporting high anxiety after discussing lab and imaging results with a doctor went down to 13 percent.

These results indicate that it’s good for patients to have access to their lab and imaging results, but best for them to be able to discuss results with their providers to truly feel at ease with their health. In fact, it was far more common for patients to say they’d like to wait to see their results until they could meet with their providers. Only 18.5 percent of patients wanted to see their results before receiving the counsel of their doctors, and only 20 percent thought it would be beneficial to have early access to them.

These figures corroborate other recent findings indicating that patients prefer and need their clinicians to discuss lab results with them in tandem with receiving the results in the patient portal. In a recent JAMA Health Forum article, researchers from Vanderbilt University Medical Center reported an upswing in unsolicited patient complaints after the Cures Act went into effect.

“In our qualitative analysis of post-[information blocking rule] UPCs, themes were identified regarding diagnostic results from radiology and pathology reports, documentation in the medical record, anxiety related to unexplained medical findings, medical team communication, and unexpected findings in the medical record,” the researchers explained.

In other words, many patient complaints were related to seeing a test or lab result that confused them, they felt went unexplained, or that caused them anxiety.

The VUMC researchers suggested providers set expectations for patients undergoing lab screens about how they will be able to view results via the patient portal. Clinicians may advise patients to wait to view results until they meet with their providers. Clinic coordinators may also work to schedule follow-up calls with clinicians shortly after abnormal results arise.

Still, other data indicates that early access to patient data isn’t a big deal to patients.

In March 2023, OpenNotes reported that 96 percent of surveyed patients want to see their test results as soon as possible via the patient portal. Under 10 percent of the survey population said their worries increased when they viewed test results before they were contacted by a healthcare professional, but when zooming in on folks getting abnormal test results, that figure jumped to 16.5 percent.

One possible distinction here is the survey population. The OpenNotes study looked at a general patient population regardless of disease state. The City of Hope study looked at people with cancer who might be receiving more sensitive or serious test results. However, neither of these studies specifically explored these differences.