The perils of patient portals: lost in translation

One year ago, I underwent a transperineal biopsy of the prostate based on the velocity of PSA escalation over time and a multi-parametric MRI which revealed a “left mid gland focal peripheral zone lesion, concerning for clinically significant prostate cancer, (PI-RADS 4).” The biopsy confirmed prostatic adenocarcinoma, Gleason 7/10 (3+4) in 4 targeted cores plus one additional biopsy site positive with perineural invasion present. On my initial consultation at the Cancer Centre, I was introduced to MyChart: “stay connected to your health information,” allowing “online access to your medical records.” The brochure listed 46 “participating partners” in the MyChart Network at the time. I was familiar with the concept of online access to health records, although never so intimately engaged. I was further encouraged to learn that “it’s fast, easy and free.” I registered online and have since followed my expanding clinical footprint. I completed a course of SBRT 40Gy in 5 fractions delivered by MRLinac on Aug. 12, 2022. If some of the terminology above is perplexing or foreign to you, imagine how a medically naive patient must feel when reading MRI and other imaging reports, biopsy results and consultation notes electronically generated from source and posted online, effectively in real time. I must admit, even I needed Dr. Google at various stages of my cancer odyssey to explain some of the more esoteric peculiarities of my prostate’s proclivities. There is, however, a more concerning aspect to the electronic regurgitation of results—the timing of the posting. In my personal experience, the MRI report was posted in MyChart five days prior to my scheduled virtual call followup with the radiation oncology clinical fellow. Similarly, the biopsy results were posted five days prior to my followup with the radiation oncologist. When I spoke with the clinical fellow, he began the conversation by stating the purpose of the call, specifically to review the MRI report which would then inform the prospective management plan, in my case, a transperineal biopsy. I advised that I had already read the report in MyChart and had a copy in front of me for our collective review. To which he said, “that shouldn’t happen.” I couldn’t have agreed more. Although my familiarity with the technical medical terminology of record is well beyond the comprehension of most of the patient public, what do they do in these circumstances? They wait! They search the internet for answers, finding tiny bytes of information that eventually coalesce into a completed jigsaw puzzle—which may not reveal the complete picture. They call their primary care providers, only to be put on hold, often paralyzed by a mind-numbing array of connectivity options, a poorly chosen playlist, or to be told by some automated robot that they are unable to leave a message. When a successful contact has been made, it’s then the doctor’s assistant’s prerogative to book an appointment for a virtual call at the doctor’s behest or, an actual in-person visit in two weeks’ time, as this is “not a medical emergency.” In the interim, the patient, who has picked up snippets of unintelligible clinical jargon, remains afraid, only to be relegated to the vast wasteland of the wait. It’s surprising to me how such a vital adjunct to patient care as an electronic patient portal fails to recognize the material risks associated with the “immediate release” of information. This creates unnecessary stressors on the providers, both the specialists who generate consultation and followup notes and the family physicians who get enmeshed in the maelstrom of patient expectations and demands. Similarly, the departments that generate reports, lab, imaging, pathology etc., frequently get caught in the crosshairs of patient dissatisfaction and distrust, despite the warning that “abusive language will not be tolerated.” In order to assuage the patients, is it necessary for consultants to effectively “dumb down” their clinical-speak in a way that patients can better understand the implications of their reports and results? That is, until an actual direct conversation between doctor and patient can ensue. The specialist docs know their patients are reading their prose but so, too, are their referring physicians who probably won’t appreciate benign references to “shadows, lumps, masses, abnormal cells, questionable lesions” in the same way as a patient might. The electronic health record has become an active and integral partner in the patient/doctor interface. It will only become more intrusive in time, despite the obvious intentions of sharing clinical information in as transparent a manner as possible. There is a vital need for “interoperability” making the electronic information accessible to all stakeholders engaged in the provision of clinical care as well as the recipients. There must, however, be cautionary measures taken when the immediate release of data arrives simultaneously at the doctor’s laptop and the patient’s portal. This can be a prescription for mayhem. The system needs a “kill-switch” that will block release of “abnormal” results to patients prior to their attending physician acting on these results in whatever methodology is clinically indicated. The delivery of abnormal results has always been a challenging entity. We were never schooled in the tactful provision of bad news. In this “age of burnout” which insinuates itself into every aspect of our professional lives, no one is looking for additional pro bono work. But, there’s a plethora of codes on the menu that can be mined to compensate providers with sufficient financial rewards to overcome the time involved in providing not only exemplary care but care that is meaningful and appreciated and fulfilling for both patient and doctor. Perhaps our patients should have an option to decide whether the convenience of “immediate” could be better served by a more traditional conversation between them and their physician. It’s really the cornerstone of our profession, an extension of the classic bedside. The patient portal has become a way of life, a necessity. It could use a tweak or two in order to inject a therapeutic dose of humanity into a system that is not only computer-driven, but one that may leave us in a robot’s dust in the near future. On Aug. 4, I return to the Cancer Centre for the first anniversary of the completion of my radiation treatments. I always look forward to the enlightening conversations with my radiation oncologist. It’s been an interesting year, not one necessarily anticipated in my early retirement. The followup visits have been very encouraging thus far and the PSA, when last measured in February, had plummeted to subnormal levels. As I continue in the increasingly comfortable capacity as “the patient doctor,” I remain a determined advocate for my former patients and friends who struggle with the acutely acquired knowledge of their medical circumstances without the fundamental tools for translation and comprehension. They are lost, wandering aimlessly, simply looking for answers. And they wait. My cellphone rings. There’s a request to walk someone through a recent consultation report, a test result or a therapeutic proposal. Their lives have been precipitously upended, blindsided by an ominous and threatening unknown. They are lost in a world of the unfamiliar. I do so willingly, a results “whisperer” of sorts, guiding them through the clinical complexities with compassion and objectivity, for I now share that unique patient perspective.

The perils of patient portals: lost in translation

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Blog Author

HOWARD GOLDSTEIN

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