Imagine finding out that you have cancer via a text message while barreling down the Northern State Parkway.
It was a Friday, April 1, when an alert from NYU Langone Health popped up on my phone. A few minutes later, stopped at a light on Route 110, I logged into my patient portal, hit the “Test Results” icon and scrolled through the medical jargon until I got to the punchline: “14 x 6 mm left posteromedial base peripheral zone lesion. PI-RADS 4, high (clinically significant cancer likely).”
Shaken, I sat at the light, cars beeping behind me, and searched for reassurances, signs that there was some mistake, that it wasn’t as bad as it sounded.
To be fair, the ominous results didn’t come out of the blue. My journey began with a slightly elevated PSA test result following a routine physical in February. To rule out prostate cancer, my primary-care doctor sent me to a urologist, who sent me for a sonogram and then the MRI that revealed the no-joke April Fool’s Day news.
I spent the next two weeks Googling every phrase in my medical record and calling everyone I know with a medical degree. Finally, I met face-to-face with a urologic oncologist, who talked me through the findings and next steps: To confirm the diagnosis and stage my cancer, he scheduled a biopsy.
Once again, I saw the life-changing test results before the doctor did – and obsessed for three days before we met to discuss treatment options.
This lightning-fast delivery of lab results, covering everything from routine cholesterol tests to high-stakes biopsies, is a function of robust electronic health records, smartphone apps and other newer-and-better technologies. It’s also required by the 21st Century Cures Act, which was passed by Congress in 2016 and as of April 2021 requires healthcare providers to provide immediate patient access to all test results, clinical notes and medication lists without delay or additional cost.
In pre-portal times, I probably would have been hurriedly called into my doctor’s office, stunned into silence as he or she spilled the bad news and later regretful for all the questions I didn’t think to ask. That’s assuming I would have even gotten a call: a 2011 study found that up to a quarter of abnormal test results, including those suspicious for malignancy, were not followed up in a timely manner.
In my case, the lag between seeing the test results and talking with my doctor gave me time to process the information, come to emotional terms and prepare informed questions in advance of my appointments.
Researchers have recorded spikes in anxiety and depression among patients who receive bad news by themselves; my pathology results came complete with suicide-hotline numbers.
But many healthcare advocates argue that more transparency can empower patients to become active partners in their own care, boost care-plan adherence, enhance provider/patient communication and produce better outcomes.
Fair enough. But leveling the playing field and empowering patients to make intelligent decisions requires more than a data dump. Clinical records are designed for clinicians, not consumers, and adding some context to better explain results – especially abnormal findings – can help lessen anxiety.
Sending links to vetted health information along with pathology results can also counter the marketing messages and misinformation that often dominate online search results. A 24/7 test-results hotline staffed by clinicians – perhaps a live chat function – could help those reeling from an unexpected diagnosis. And translating healthcare records into multiple languages is increasingly important as we become more diverse.
According to the federal government, nearly 90 percent of U.S. adults still struggle with health literacy, defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information needed to make appropriate health decisions.”
That number is bound to improve as more consumers get a firsthand look at their own medical records and test results. Yes, sometimes they’ll be shocked – but they’ll also be calling their care providers, asking better questions, tracking their test results and collaboratively researching treatment options.
And because of all that, maybe they’ll achieve the best possible outcome – like me.
This article first appeared on InnovateLI.com