You’ve been awakened from a sound sleep by discomfort in the solar plexus. OK, we know there isn’t a “solar plexus,” rather it’s the celiac plexus, that jumble of nerve fibers located in front of the crura of the diaphragm. However, as kids, many of us learned it was the solar plexus because our parents said so. Besides, solar plexus is cooler to say than celiac plexus.
Anyway, back to that pain……..it fades away as quickly as it came on, but in the morning, you begin to think about it. Could it be that a hardened conglomerate of cholesterol and bilirubin obstructs my gallbladder? Or is it—could it be—pancreatic cancer? You reach for your phone and Google “solar plexus pain”. You are astonished by the list of diagnoses ranging from acute onset of diabetes, to pancreatitis, to bowel obstruction, to a ruptured stomach ulcer, to……..
The 21st Century Cures Act (aka the Cures Rule)
On December 13, 2016, the Senate and the House passed legislation requiring providers to connect their patients, via electronic portals, with real-time access to their health data. With good intentions, the architects of this act, officially known as the 21st Century Cures Act, were driven by the hope of empowering patients, granting them unfettered access to their medical information. In doing so, patients could actively participate in care decisions with actionable information. Patient-Centered Care actualized! It was also noted that they might save money by reducing the need for in-person visits, although the reimbursement for portal messaging and interaction is currently unclear for providers.
Consider your PCP (MD, DO, NP, PA, even a PT in some states) orders an MRI to delineate cartilage, tendons, bone, and nerve in that troubling hip area you’ve recently noted. As fast as electrons can move, once the test is done and the imager files their report, it’s sent to your portal—thanks to the Cures Rule—and if you’re interested, you can see the interpretation in its unfiltered, raw, medical speak, perhaps, even before your PCP does.
If you elect to do so, you may encounter terms like “tear,” “degenerative,” “unusual shadowing,” “area of concern,” “benign mass,” “arthrosis,” or some other concerning verbiage. At a speed that rivals the breakdown of acetylcholine by acetylcholinesterase, you consult your default PCP, you Google it!
Whether experiencing some somatosensory “event” in the middle of the night or a quick peek at your patient portal regarding a lab or imaging study, many fall victim to what might be termed “Googlechondria,” the inextricable merging of hypochondria and technology. Is that a thing? Yes. Google it! And we guess that if you have a connection of some sort with a hospital, private practitioner, or group healthcare provider, you have likely logged on to a patient portal.
The double-edged sword of transparency
There is clearly an upside to providing patients with rapid and transparent access to their health data. Fast access to lab reports or imaging interpretation provides patients with the opportunity to process that information and formulate talking points and questions in advance of their meeting with their healthcare provider. Having that information immediately available, especially when the results are typical or otherwise favorable, can greatly decrease a patient’s anxiety and provide great relief and assurance. As we noted earlier, there may be a cost and convenience benefit to avoiding an office visit.
However, this change can be a double-edged sword. When patients read complex or jargon-filled medical results on their own—without the context or explanation a provider would normally offer—it can heighten stress and even trigger feelings of fear or despair. A downstream consequence of the Cures Rule could be exacting an emotional toll on patients and a paradoxical amplified burden on their healthcare providers.
Though just an N-of-1 sample, we asked our own PCP about their thoughts and were surprised to learn that the patient portal platform has generated a considerable burden of time and effort for them. Some patients extensively use the messaging component of the portal to ask questions, seek additional information, and express their concerns, sometimes at great length. The addition of the patient portal to the PCP’s practice has created what they describe as a significant workload added to an already busy day of seeing patients. The patient’s thoughts or questions instantly become part of a discoverable medical record, requiring the provider to exercise due diligence in reading and responding. Our PCP described the likelihood of hiring a triage nurse to monitor the portal and/or reduce the number of patients they see each day. Each of these has its own set of associated economic, logistical, and inconvenience factors.
An AI-powered healthcare portal
We have no relationship with athenaOne® and came across it serendipitously in our research. It is typical of the entities we visited that engineer patient portals. This AI-powered platform is described as enabling patients to seamlessly access their personal health information, communicate directly with their providers, auto-schedule, and manage their appointments. They can also view test results, request prescription refills, and access relevant educational materials.
AthenaOne®, like several others we visited, described a common set of purported benefits for patients and their providers. These were generally described as offering convenience, lower cost, efficiency, and improved care coordination. Of those we visited, all mentioned the American Medical Association’s (AMA) best practices for communicating information through a patient portal. The AMA white paper notes that portal inbox messaging has increased by 157% over the last several years. The likelihood of it continuing to increase, placing a growing burden on providers, is concerning.
It is increasingly likely that patients may encounter an AI-powered “voice” on the other end of the messaging service. It is also thought that while access to lab and imaging studies is a key component of the portal, an AI-modified message could be sent to the patient, while the raw, unabridged report would be sent to the ordering provider.
Vulnerability and security of patient portals
An additional concern is that information on a patient portal is extremely sensitive and vulnerable, given that data breaches of corporate and governmental databases are increasingly common. HIPAA requires that the electronic transmission of protected health information be encrypted; however, healthcare institutions may assume that portals are secure despite evidence of their insecurity.
An imagined, but plausible scenario
Consider our contrived patient scenario, though imagined, could easily occur. A 27-year-old, single mother of two was diagnosed with endometrial cancer two years ago and is now in remission after surgery and chemotherapy, which proved severely debilitating. Six weeks ago, she began having a sense of pelvic fullness and paresthesia in her sacrum and legs. She spoke to her OB/GYN, who ordered a CT of her abdomen and pelvis. It was scheduled on a Friday, and unbeknownst to her, the OB/GYN was going on vacation for the following four days.
Late afternoon on Friday, her imaging results appeared in her portal, which she had anxiously tried to access earlier. On the third try, she found extremely alarming information that included, “suspicious ovarian involvement concerning previous history,” “shadowing on sacral nerve roots, cannot rule out mass-related compression,” and “recommend surgical biopsy for definitive diagnosis.”
Devastated, frightened, and confused, she dialed the OB/GYN’s answering service. She was informed that a nurse practitioner, whom she did not recognize, was handling all calls until her doctor’s return. She was reluctant to talk to someone she did not know. Over four tormenting days, she dealt with questions like, Am I going to die from ovarian cancer? Who will take care of my children? Concerns mounted: Will I need surgery and chemotherapy again? Is the cancer going to paralyze my legs? Dealing with this in a vacuum and with repeated forays into Google for information, she agonized, feeling emotionally distraught. The report never mentioned cancer.
While the news she received on the patient portal proved overwhelming, discussing the information in a face-to-face meeting with her provider would have placed the imaging study in context for her and provided the needed guidance. Instead, she was left to deal with complex jargon and uncertainties that surfaced. Some readers of this blog may have their own tales of coping with concerning personal health information and how different the experience can be when managed in the context of speaking with their trusted provider.
What are your views on patient portals?
Consider the patient portal as if you were consulted on how to improve the platform. We will throw out a couple of ideas to get the ball rolling, and we’d love to hear back about your thoughts (including if you feel no improvement is needed)!
We’d start by:
- “Softening” certain results, rendering them in plain language summaries, avoiding highly emotive language like “cancer,” “life-threatening,” and “invasive.” or ensuring these terms are seen only at the providers’ discretion.
- Patients could opt in or opt out of select portal features. Some patients likely wish to see even the most concerning reports in the original language summaries and should be provided that privilege, while others may feel differently. The portal should accommodate the patient’s preferences.
Our intent is not to question the value of the patient portal but to recognize that, just like the drugs we use, patient portals may have concerning downstream consequences. The Cures Rule should be carefully factored into any discussion regarding patient portals.
We’re CRNAs ourselves, and we understand the challenge of fitting CRNA continuing education credits into your busy schedule. Whenever you’re ready, we’re here to help.
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