Imagine a young woman finding out she has recurrent leukemia during a parent’s wedding ceremony. Or a man learning he has stomach cancer while waiting for a job interview to start.
Now imagine the wife of a patient needing acute treatment for an anxiety attack because she has seen a radiology report she thinks describes rapid and potentially lethal progression of her husband’s lung cancer, but the CT scan shows his treatment is working.
Or a man harming himself after reading a pathology report he thinks shows a new cancer diagnosis, but it doesn’t.
Now stop imagining, because all these scenarios, and many more like them, have occurred.
When the federal 21st Century Cures Act’s Information Blocking Rule went into effect, it required all medical test results to be released electronically to patients immediately. The legislation has sound and strong rationale, as patients deserve access to their medical records.
But in this case, implementation came before understanding implication. Not all medical test results are the same. Some are relatively routine, like cholesterol and blood sugar levels. Others may be life-changing, such as a cancer diagnosis. Some may be relatively straightforward to understand, like blood counts reported as a number, with a normal range included for comparison. Others, chiefly pathology and radiology reports, come in the form of multiple paragraphs of free text, filled with medical that may sound scary even when they describe normal findings.
According to the Cures Act, all these results are treated the same, with patients receiving e-mail and text notifications the moment the result is available. In our smartphone-based world, it’s a normal human reaction to check such alerts immediately — and patients do. In a recent study, we found that patients now view their pathology test results before the doctor who ordered them almost 60% of the time; for radiology results, it was almost 80% of the time.
Why does this happen? Although the results are delivered to patient and physician simultaneously, physician notification occurs through the electronic medical record in-basket. Dozens of results from dozens of patients arrive daily. Increasingly, patients see these results prior to the physician, who may be seeing patients or performing surgery rather than sitting in front of a computer at that moment.
Starting this September, Texas health care providers and their patients will once again have an opportunity to communicate about potentially life-changing medical test results the way they had for decades: by talking. Senate Bill 922, which was signed into law on May 19, allows up to a 72-hour delay before sensitive test results related to cancer or genetic diseases are released to patients electronically.
This gives clinicians the opportunity to call a patient and explain what the test showed, what it means, and what happens next. The test results will still be delivered electronically but will no longer always be the first method of communication.
Now when patients see terminology like “signet ring cells, consistent with poorly differentiated carcinoma,” “submucosal fibrosis and thickening present,” and “immunohistochemistry positive for CK20 and CDX2,” they might already have heard from their health care team what their diagnosis is (or is not) and what the plan is.
While the Cares Act is a federal law, it contains a provision that defers to state privacy laws. That’s why physician, nursing and hospital organizations throughout Texas ed age of SB 922. It was also ed by individual patients and advocacy organizations.
Does this surprise us? Absolutely not. Studies have shown that, when it comes to receiving medical test results, patients feel differently about radiology and pathology reports than they do blood and urine tests.
In our practices, patients who have personal experience getting confusing information or bad news online hope never to do so again. It is also helpful to that first, SB 922 applies to a very small proportion of medical tests, and second, patients will still receive, and own, all their test results.
With SB 922, Texas becomes the third state after Kentucky and California to address the unintended and potentially detrimental consequences of the Cures Act Information Blocking Rule.
As physicians, we applaud our state for its initiative. It feels good to lead rather than follow the nation on such an important medical issue.
David E. Gerber, M.D., is a Dallas-based medical oncologist. Philip A. Bernard, M.D., is a Dallas-based pediatrician and medical informaticist.
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