Stories like these are not unusual. Miscommunication of test results leads to misdiagnosis all the time. As many as 62% of laboratory and 36% of imaging results are overlooked by care providers. In some cases, the missed result is critical, with devastating consequences for patients. And yet, doctors and regulators balk at requiring testing doctors – pathologists and radiologists – to directly communicate significant results to patients. To avoid adverse outcomes for patients, test-performing doctors must be required to report significant test results directly to the patient as well as the ordering doctor. They can do so through a simple phone call. By communicating directly with the patient, test-performing doctors can help ensure that this vital information does not fall through the cracks.
Test result miscommunications happen because results follow the doctor rather than the patient. For a patient who has been to the emergency room, their test results go back to the test-ordering doctor they saw in the ER two days ago, not the doctor they are seeing today. This new doctor doesn’t know that a test is pending on the patient; the ER doctor who ordered the test may not see their patient again. An overwhelming 300 electronic notifications a week make it difficult for a doctor to keep track.
Some test results are also misunderstood by doctors. Health care providers are finding it increasingly difficult to keep up with the wide array of complex tests available today. Increasing sub-specialization further limits familiarity with what test results mean, especially those outside of one’s specialty. One wonders if the neonatal intensive care unit nurse who saw Webster’s ultrasound report fully understood the concern it raised. Babies born with cancer are incredibly rare. Perhaps Berg’s surgical team missed the import of her laboratory report due to a lack of familiarity with that illness. Humans tend to dismiss or discount unfamiliar information that does not fit with our reasoning processes, what scientists call “confirmation bias.” Patients with mono rarely make it to the surgical floor. Sheridan’s result, I am convinced, was misunderstood by the surgeon. The pathologist’s diagnosis, made while Sheridan was on the operating table, would set off alarm bells for a soft tissue tumor surgeon. But not for a spine surgeon.
As a pathologist, and one who deals specifically with discovering ways to avoid diagnostic error, I am baffled by doctors who strongly oppose the direct communication of test results to patients. Directly transferring information is one of the best ways to prevent miscommunication. Reporting to two people – in this case, the doctor and the patient – also reduces the likelihood of inadvertent oversight and ensures patients receive complete and accurate information to make informed decisions. Not requiring testing doctors to communicate significant results to patients puts poor, uneducated or immigrant patients at particular risk. They more often seek care in ERs and clinics and do not have a primary care provider. Frequent handoffs between rotating physicians, often trainees, make it even more likely that a significant result will get overlooked.
To be sure, many patients prefer getting test results from their personal doctor – but surely not at the cost of a missed diagnosis. Doctors worry that patients will find it upsetting to get their test results from the pathologist or radiologist with whom the patient does not have a preexisting relationship.
This argument is simply a vestige of medical paternalism. Doctors use the idea of the distraught patient to maintain power as interpreters of medical information. Pathologists and radiologists use it to maintain control over their time; they do not get paid to talk to patients. Not allowing direct communication of results to patients adds needless anxiety: The time from report finalization to communication is longer if there is an intermediary. Besides, patients already successfully navigate dealing with subspecialists. They occasionally even see the test result on the patient portal before their doctor does. Direct reporting by pathologists and radiologists is better: The pathologist and the radiologist are also the patient’s doctor, and they can explain the result better.
In fact, we know that direct patient communication from test performing doctors reduces missed and miscommunicated results. The Mammography Quality Standards Act, enacted in 1992, instituted direct patient communication for mammography results from radiologists. After that, lost or miscommunicated mammography results virtually disappeared; concerns about ill-prepared radiologists upsetting patients never materialized. Some more recent studies also suggest that patients appreciate explanations from both the testing doctor and the clinician.
Pennsylvania has taken the first small step toward enacting direct communication of results to patients. The Patient Test Result Information Act, sponsored by Marguerite Quinn, who lost a friend to a delayed cancer diagnosis due to a missed imaging study, requires imaging centers to inform patients of significant findings within 20 days of the test. But the bill does not go far enough. It exempts imaging done in the emergency room, does not apply to all tests (e.g., pathology results), and does not require communicating the actual test result, but only that the “test result” warrants further attention.
Safe, high-quality care requires informed decision making by patients, which in turn requires full access to information in an understandable format. The only way to ensure this is to require that testing doctors communicate significant results directly to patients. Health insurance and medical malpractice carriers should join hands with safety organizations to lobby for this important change in order to guarantee optimal outcomes and avoid harm for patients.
Vinita Parkash is an associate professor of pathology at the Yale School of Medicine.