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The Cures Act

The Road to Hell is Paved with Good Intentions

November 7, 2022

The 21st Century Cures Act is a federal law that intends to bring health care into the modern era, introducing transparency and easy patient access to medical records. The Act requires that medical testing centers and health care providers release electronic health information test results to patients on a timely basis. The Act was originally signed into law by President Obama in 2016. In 2021 the United States Department of Health and Human Services began enforcing a rule asserting that “blocking” the release of health information to patients was illegal and could result in fines for physicians and hospitals.

 

On October 6, 2022, a new requirement expanded the scope of health information required to be released. Originally, the requirements were for clinical notes, certain patient demographic data, and data lineage. The new requirement is for the prompt release of the entirety of the electronic health information. In practice, this translates into physicians and patients receiving results simultaneously, often with patients reading results –lab tests, imaging tests, pathology reports, etc. –before their doctors have an opportunity to do so.

The intention of the law is to increase transparency and standardize the way medical results are delivered using the Internet, providing medical information immediately upon its availability. Is this a good thing?

 

Physicians generally support transparency, and while most of the medical information released to a patient is beneficial, certain tests, report results, and clinical notes require physician review and discussion. Transparency without context is dangerous, and in the absence of physician consultation to contextualize the results, information delivered via patient portal or email alert can cause shock, confusion, and emotional and mental distress. It’s one thing to deliver normal results via an online portal, but pathology reports indicating cancer, or studies revealing a life-altering, debilitating, or terminal diagnosis are highly problematic.

 

Some patients genuinely appreciate the rapid access to their medical testing results, but many others would prefer not to receive medical information — particularly critical results — without the benefit of their health care provider looking them in the eyes, rendering a detailed explanation of the results, and practicing not only the science of medicine, but also the art of medicine. Medical results are often bewildering to patients and the language and terminology used to convey the results of imaging and pathology — medical-speak — is complex, mysterious, and difficult to understand.

 

As an example, the following is my lumbar MRI report. Pay attention to the impression: “edematous endplate degeneration,” “Schmorl’s node,” “facet hypertrophy,” “thecal sac,” “impingement,” “levoscoliosis.” Do you think that the average lay individual has a clue regarding the meaning of these terms? Even as a physician, I am challenged with certain medical-speak that involves areas of the body that I don’t deal with on a regular basis. My report essentially showed a herniated disc. 

 

When a physician orders imaging tests or performs a biopsy, it is for very specific reasons. Not uncommonly these tests are done because of suspicion of a problem, and not uncommonly the results will, in fact, indicate a problem. With the advent of this latest modification to the Cures Act, my patients are receiving alerts on their smartphones indicating the availability of imaging and pathology reports, e.g. CT imaging that may demonstrate a large mass in the kidney or a pathology report indicating a newly diagnosed prostate cancer, before I have had an opportunity to review the results or have had a chance to consult with the patient. Ugh! Is the release of these results by email or via the patient portal the optimal way to deliver critical medical information?

 

Bottom Line: Critical or abnormal lab results, imaging results, and pathology results delivered to patients — without the benefit of physician interpretation and context — can cause high anxiety. In my humble opinion, the 21st Century Cures Act needs some tweaking and modification for the benefit of patient sanity. Transparency and immediacy are noble intentions, but high anxiety is not.

 

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