Navigating OpenNotes: Advice From an Oncologist Who Survived Cancer

Mark A. Lewis, MD


November 03, 2021

This transcript has been edited for clarity.

Hello. This is Dr Mark Lewis for Medscape. I'd like talk to you about a hot topic: exactly how and when patients with cancer receive their test results.

There are essentially two groups: those who lobby for immediate access to that information and those who think that results are better presented in the context of a formal, face-to-face, doctor–patient interaction. In fact, this matter has already been decided because there is a provision in the 21st Century Cures Act that prevents delayed release.

I'm going to read here exactly. Effective this year, the information-blocking prohibition disallows healthcare providers from engaging in any practice that is "likely to interfere with access, exchange, or use of electronic health information." In fact, the only exemptions come if there is a determination in advance between the patient and the provider that such a delay is permissible, or if the provider determines that immediate access is reasonably likely to endanger the life or physical safety of that patient.

I have two views here. One is as an oncologist and the other is as a patient and also a loved one of a patient. I think the reason this strikes me as such a touchy subject is the history of my father. When we emigrated to the United States from Scotland, we — myself, my father, my mother — were all required to undergo chest x-rays to exclude tuberculosis.

My father found out in the most dispassionate manner possible that his chest x-ray was abnormal. He learned it not from a physician but from a government official — one who screened him for TB, found no evidence of that, but was able to tell my father that his chest x-ray was aberrant.

The fact that my dad learned of his cancer in this way always colored my impression of the illness, and in fact led to some pretty significant clinical misunderstanding of what exactly that opacity represented — something that plagued him for years.

Much later, as I was training as an oncology fellow, I received formal education on the art of breaking bad news. I realized that there are certain life-altering results contained in the electronic patient-facing portals that have a real danger of causing our patients alarm, sometimes unnecessarily, if they're interpreted in the wrong context.

On the other hand, as a patient, I have accessed the electronic portal to get results of a scan, and I feel like I am the owner of my own data. My own body generated the pixels that are now being interpreted as clinical images. You can say the same of the blood that led to lab results. I do understand this essential tension, and I know the pendulum has already swung pretty firmly in the eyes of the law in the direction of immediate access.

How do we reconcile this? The one thing I actually like about this system is the asynchronicity by which results are delivered. I deliberately build in an interval between, say, a scan happening, my ability to present it at a multidisciplinary tumor board — I will tell the patient explicitly that I'm doing that — and then meeting with them afterwards so I can tell them my interpretation, show them the pictures, and tell them the consensus from the conference. I think it's increasingly common in oncology that we do this.

This requires some transparency. It requires telling the patient that they're going to be presented and explaining to them why there is a delay between the scan and then meeting with me. I think it's understandable that patients are going to want to know their results in that gap. It also comes with a covenant that the doctor and the patient will decide on how best to act on those results together.

It is clear to me that radiology reports and pathology reports are difficult to interpret. This is not condescending to say; it's just the truth. To some laypeople, there is a technicality of language that can be very difficult to interpret. A radiology report, for instance, might use as synonyms "mass," "lesion," and "tumor."

Then there's the metric system, which many Americans are not used to interpreting. In fact, I have detected a flaw of immediate transcription. Our radiologists will often use voice-recognition software. I have seen millimeters mis-transcribed as centimeters. I had one of my patients log on, read the report, and think that they had experienced a tenfold progression. When I met with them at their next visit, they said that knowledge had made them suicidal.

That hit me like a punch to the gut with just how weighty these results can be, let alone all the anomalies that might be surfaced in a CBC. Say someone has an aberrant mean corpuscular hemoglobin concentration. I can reassure them in person that there's very little clinical significance to that.

We will find the right balance together. By together, I really mean the patient and ordering provider. Only a relationship that is built on trust is going to result in the proper interpretation and contextualization of these test results.

For now, this is Mark Lewis for Medscape. I hope you're well.

Mark A. Lewis, MD, is director of gastrointestinal oncology at Intermountain Healthcare in Salt Lake City, Utah. He has an interest in neuroendocrine tumors, hereditary cancer syndromes, and patient-physician communication.

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