A recent article from Paul Hsieh, MD, addresses patient test results. One of the big consequences of the 21st Century Cures Act is that patients now have immediate access to their personal medical data — such as radiology reports — as soon as the data is available. In the case of radiology reports, this means that once a radiologist has signed off on his or her final interpretation of an imaging test (e.g., an X-ray, mammogram, MRI/CT/ultrasound scan), that report will typically be uploaded to the patient’s health information portal and become immediately available for the patient to review electronically.
Thus, a patient might often learn the results of, say, his or her MRI scan before his or her primary care physician (or other ordering doctor) has read the report for him- or herself. This is in contrast to a few years ago, when most electronic medical record systems allowed an ordering physician to routinely place an embargo or “hold” on radiology results until he or she reviewed the information first, at which time the physician would release it for the patient to see.
In theory, if the report included some emotionally disturbing news (such as a diagnosis of cancer), this old policy would have given the physician time to inform the patient in a manner the patient could best handle, as well as information about the best care options for that patient. However, many patients also found this approach too paternalistic, especially if they might not have had an appointment to see the ordering physician for several days to learn their scan results.
But under the new law, physicians can no longer routinely embargo such data. In fact, such embargoes are considered illegal “information blocking” under federal law.
As a practicing radiologist, I personally favor the practice of immediate release of radiology results (and other medical test results). I believe that patients have the right to know important data about their own bodies.
(There is a separate, broader question of the proper role of regulatory agencies in making such policies mandatory that is beyond the scope of this piece.)
A recent study from University of Colorado showed that the vast majority of patients preferred reading their radiology reports — and seeing their images — as soon as they were available. This policy resulted in “increased levels of trust, autonomy, reassurance, and medical understanding” whereas only “a small minority of patients expressed anxiety or confusion.”
Amongst radiologists, opinions are mixed. The American Journal of Roentgenology recently published a pair of point/counterpoint articles on this topic. Supporters of immediate release argued that this approach improved transparency and gave patients more control and medical autonomy. Skeptics of immediate release warned that this could unnecessarily increase patient anxiety as well as place excess burden on ordering physicians’ offices, as they coped with increased calls and messages from distraught patients.
Although I support the concept of immediate release of radiology reports, I would like to offer a few pieces of advice to patients who wish to exercise this right to their personal medical data:
1) The reports are typically written with medical terminology aimed at physicians, rather than patients.
Although patients can always “Google” unfamiliar terms, it can still be difficult to understand whether a particular finding mentioned in a radiology report indicates something serious vs. “no big deal.”
Fortunately, the American College of Radiology (ACR) and the Radiological Society of North America (RSNA) have hosted a website aimed at patients called RadiologyInfo.org that can help with many of these issues.
In particular, I recommend their patient-friendly pages on “How to Read Your Radiology Report” and “Which test, procedure or treatment is best for me?”
In addition, their “Diseases and Conditions” page has links to many specific medical issues (e.g., breast cancer, prostate cancer, Alzheimer’s Disease, etc.) and the role that radiology tests play in diagnosis and treatment.
2) Know yourself and your tolerance for possible bad news.
As mentioned above, current federal law does not allow health systems to engage in “information blocking” of medical data except for a few rare circumstances. In particular, if an adult patient wants to learn their radiology test results, the medical facility is obliged to release that information unless they reasonably believe this would result in “danger to life or physical safety” of the patient. Furthermore, there is NO provision to allow withholding data from the patient for “emotional or psychological harm.”
This means if you choose to click on the “View Report” link in your health portal, you are assuming the risk of learning something that you could find emotionally distressing.
If you would rather that your physician review those results with you, discussing the information within the full context of your health and your concerns, you might wish to wait. The new federal law offers you both the freedom — and the responsibility — to make that decision for yourself.
3) You can often call the radiologists for further help.
Most radiology practices have a contact number for patients seeking further information about their reports. (My practice includes that number at the bottom of the report.)
I’ve fielded many calls over the years from patients wanting to know what a particular finding on their MRI scan means. I always try to answer such questions to the best of my ability. I am sometimes limited because we are discussing visual data over a telephone line or because we are discussing an type of scan outside of my area of expertise or because I don’t know enough of the full underlying medical context. But I (and most other radiologists) will always try to do our best for our patients.
In summary, the health information provisions of the 21st Century Cures Act now allow patients faster access to information about their own bodies. I encourage all patients to take advantage of their rights according to their best individual judgment.