Feature Focus: When the patient gets there first
Volume 8, Issue 4 | June 28, 2023
Is immediate access to test results always a good thing?
A recent article in STAT News covered a subject that is central to today’s diagnostics landscape. Here we offer our in-depth look at the topic, and our plea for a logical and disease-specific happy medium.
Should patients always have immediate access to their test results?
It’s great to see the patriarchal “doctor knows best” days (slowly) fading away. And it’s often great to get access to test results without having to wait for a clinician to review them, whether those results come from your phone or watch, from a 15-minute at-home test, or from a lab-based test whose results you can access via an online portal. But there are times when test results require interpretation from someone with a little more knowledge than a lay patient who is assisted by Dr. Google.
A recent article, written by a family-medicine physician for STAT News, thoughtfully discusses those instances when patients access potentially anxiety-producing results before their doctors have a chance to weigh in. He calls for further research into how increased access to test results affects patients and gently suggests that it might be a good idea to once again ensure that clinicians get access to those results first.
Before we go further, important to clarify that there are two issues here:
Access to results of traditional lab tests through patient portals. These portals are now ubiquitous, and as of 2020, 40 % of patients used them, up from 27% in 2014. The pandemic has no doubt increased this number, and we expect it to continue to go up.
Direct-to-consumer tests. The major sub-categories include:
At-home tests. Some of these have been around for a while (pregnancy tests, ovulation tests, at-home HIV tests, and of course, blood-sugar tests), while others are relatively new. At-home testing for infectious disease took off with COVID and continues to grow. We expect flu and RSV to be next in the fully at-home / over-the-counter / rapid-test category. From there, technology and cost will dictate which set of tests will be sensitive and specific enough to be packaged and completed at home.
At-home sampling with lab analysis. The major sub-category of DTC tests are those where the sample is taken at home but the analysis is done by an independent company. Most of these companies, at least the well established ones, conduct their testing in a certified laboratory - either their own or through a partnership with a national or regional reference lab. Within this market - there are two segments:
Genomic analysis (think 23andMe, AncestryDNA, Nebula Genomics, among others). These tests use DNA analysis to reveal your genetically based risk for various conditions, from Alzheimer’s and breast cancer to diabetes and more. Initially called “recreational genomics,” the field has evolved dramatically and now includes evaluation of your genetic risk for significant health issues. The tests also look at drug metabolism - how you metabolize one drug class versus another. Lastly, they provide data on whether you are a carrier for a particular disease - meaning that while you are not affected, you could still pass that disease onto your children.
This category has gone from niche to mainstream, with consumers numbering in the tens of millions - a multi-billion-dollar market that’s growing rapidly. This class of tests comes with a big caveat: Risk assessments are NOT diagnoses. (Mara’s personal example: One test showed a 6 times greater than average risk for a certain disease - but still only a 3% lifetime risk for getting that disease.)
Wellness testing (think Everly Health and Let’sGetChecked, among others). These companies focus on hormone testing, food-sensitivity testing, vitamin deficiencies, and sexual health. Most offer telehealth consultation with health care providers before ordering tests and after results are released.
Why is sexual health a focus for seemingly everyone in the space? Maybe obvious - because people do not want an STI diagnosis in their medical record, which stays with them forever (at least theoretically). But a positive test often requires a prescription for antibiotics / antifungals or other treatments. This is where the telehealth consultation comes in - clinicians are available to prescribe online as they did with Paxlovid for COVID.
One argument against these STI tests is that those who are positive will not tell their sexual partner(s). The AIDS epidemic proved that thesis wrong - home testers were just as likely or more likely to share information. The same occurred during COVID.
Commentary: We agree with the article’s author in one way: There are some test results that are better delivered with a human touch. Those include:
Results that address significant and potentially dire health issues, and
Those whose interpretation is either complicated or involves more nuance than a layperson might realize.
Cancer diagnoses and diagnoses of degenerative diseases such as Huntington’s are obvious examples of the former. Tests for which a positive result only matters if it rises above a certain level are just one example of the latter. (Liz’s daughter recently received a result that indicated the possibility of a significant autoimmune disease - but her rheumatologist knew that this kid’s levels were nowhere near high enough to worry about.)
But not all test results require a clinician’s input. Surely there are many tests for which quick patient access to results is an unalloyed good - from blood sugar readings to pregnancy, hormone levels, nutritional analysis, and sexually transmitted infections. The vast majority of adults understand what these test results mean, and they know what follow-up actions to take based on the results they get. Many of these tests are also broadly available at prices under $5, and they’re taken for granted at this point.
In the BC era (Before COVID), we would not have put infectious disease in this category, but COVID proved that we can put these tests in consumers’ hands (or noses) and trust that they can take it from there. Will everyone follow up correctly? No. But does everyone do what their doctor tells them to do after a test result? Also no. Home testing is not as different as is sometimes perceived.
An emerging category of tests falls between these two types. For these, while it’s reasonable for the consumer to learn their results directly, it also makes sense either to alert a clinician automatically or to prompt the consumer to contact their health care provider for immediate action or further discussion. Think detection of atrial fibrillation or sustained elevated heart rate via a smart watch.
In all, we ask, can we move away from an all-or-nothing approach? Diagnostics themselves have come such a long way from where they were in the days when getting any result required a conversation with a doctor. As so often happens, the pendulum has swung to the opposite end of its arc. Isn’t it time to settle in the middle with a more “fit for purpose” approach?
Ultimately the MOST important thing is for the patient to get the information — good or bad— in a timely way. The reason many EMRs send the information directly to the patient within a certain window is that for any number of reasons, physicians have not always communicated results timely with their patients. Clarity about which results MUST be communicated via MD versus results that SHOULD be communicated via MD versus results which would be nice to have communicated via MD is still a work in progress. But in the interim, make sure patients get their results in a timely way. The worst situation is when a result that requires prompt action from a patient sits idly in the EME waiting for to communicate if.