The 21st Century Cures Act requires that test results be released to patients even before their health care provider has reviewed them. Natalia Gdovskaia/Moment via Getty Images
The Research Brief is a short take about interesting academic work.
The big idea
Patients overwhelmingly prefer to see their medical test results online immediately, even if that means viewing results before discussing them with a health care professional. These are the key findings from our team’s recent study, published in JAMA Network Open. Importantly, this preference remains true for patients who received results with abnormal or potentially concerning findings.
We carried out this study to understand how patients are affected by new legislation to prevent information blocking and provide patients complete access to all of their electronic health information. The 21st Century Cures Act became law in 2016 to improve access, exchange and use of electronic health information. The information-blocking exceptions, which went into effect in April 2021, codified provisions that required nearly all electronic health information – including medical test results – be made immediately available to patients once the results are ready.
Many clinicians have worried that this new access may cause undue emotional distress. Some patients have reported receiving news of cancer or other critical diagnoses at home without immediate access to their clinician. For some, receiving bad news from a health care professional rather than in an online report may help to avoid misinterpretations and alleviate distress.
Others have argued that receiving bad news itself is worrying, regardless of how it is delivered. Many patients may prefer to receive bad news in the comfort of their own home, surrounded by friends and family, and with time to do their own research and prepare questions to inform conversations with their clinician.
We surveyed more than 8,000 patients, from four medical centers, who received test results through online patient portals between April 2021 and April 2022. We asked participants about the types of tests they received, their reaction to the results, the effect of the result on their health and well-being and preferences for the release of future results.
We found that a staggering 96% of patients wished to continue receiving their medical results online as soon as the results become available. Most patients – 92.5% – who reviewed their results online reported that seeing the result made them feel the same or less worried about their health. About 7.5% of patients reported feeling more worried after reviewing their result, especially when the findings were abnormal. However, over 95% of patients who received results with abnormal findings still wished to continue to receive results online – even if their clinician had not yet seen the result.
This research builds upon our prior work from 2021, which found a fourfold increase in the number of sensitive results reviewed first by patients after they were released.
The 21st Century Cures Act transforms how patients and clinicians communicate and share information to improve health care.
Why it matters
A major goal of the 21st Century Cures Act was to improve how health information is shared and exchanged between health care organizations, patients and caregivers. The law does not specify how electronic information should be released to the patient. Health care organizations have widely chosen to comply with the Cures Act by releasing all information through patient portals.
Improved sharing of information benefits both patients and clinicians. Full access to personal health information allows patients to better manage their health care, remain informed about key treatment decisions and have more meaningful discussions with their clinicians.
Before the Cures Act, individual health care organizations could choose which information was made available online to the patient. Many organizations already shared results from common medical tests. Health systems often delayed results that might cause distress, such as a new cancer diagnosis or an HIV test result, to give clinicians time to review and discuss the result with patients. Some organizations chose to withhold these sensitive test results from the patient portal altogether.
What’s next
Patient preferences around test results are highly complex and nuanced, especially when those results are sensitive ones.
One way that clinicians might prepare patients is to do pre-counseling or provide guidance at the time of ordering a test. Helping patients to understand the reason for the test, the possible results and steps for professional follow-up may help to anticipate and alleviate concerns before receiving a test result.
With the 21st Century Cures Act, the medical field is moving away from the paternalistic view that clinicians know best in favor of embracing empowered patients who take charge of their own care.
The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
