How to better notify patients of their abnormal test results

I just returned from vacation to find email messages from three patients inquiring about their recent test results.

The first email was from a young man who had fainted and underwent Holter monitoring, a test that checks for abnormal heart rhythms. The second was from a woman I recently started on cholesterol-modifying therapy who wanted to know whether her recent blood work showed a satisfactory improvement in her cholesterol. The third was from a patient who I had screened for multiple sexually transmitted infections.

Unlike with most of my emails, I was happy to see these messages. For many reasons I welcome any effort patients make to take a larger role in their medical care, not the least of which is that it helps create another redundant system for making sure things don’t slip through the cracks and that abnormal test results get appropriately followed up — something that unfortunately happens more commonly than people think.

In the past year two important studies have shown how frequently patients are not informed about abnormal test results. In August 2008, researchers from the American Academy of Family Physicians National Research Network reported that 6.8% of testing process errors reported by clinicians were errors in notifying patients of test results. Recently, in the Archives of Internal Medicine, another group of researchers found that 7.1% of clinically significant test results were not reported to patients either through a documented conversation or through actions taken by the doctor to follow up the abnormal result.

This latter study was especially concerning because the tests included blood work which sometimes showed life threatening conditions such as high potassium, mammograms, and fecal occult blood tests (a screening test for colon cancer). As patients we often assume that “no news is good news,” but as these studies demonstrate this can be a dangerous assumption.

There are two issues at hand when considering these failures. One is purely a patient safety concern. Errors are bound to occur in health care as in any other field. The key is to create redundant systems to mitigate that risk. In the case of failure to follow up abnormal test results most of those redundant systems are within the health care system. For example in the electronic medical record system that my hospital uses new results are made bold and abnormal results bright red.

While this alone is not an adequate system for ensuring physicians follow up abnormal results, it is one of many imperfect systems in place. (Interestingly, we are currently in the process of converting to a new electronic medical record system which does not seem to have this “bolding” feature.) However, in addition to these “within health care solutions,” there is a major opportunity for patients to constitute another redundant system — namely, by making sure they follow up on the results of every single test they have done. Indeed, if you can do this 100% of the time, you can be sure that not only will you be better informed about your medical care but also that your doctor acknowledges and appropriately follows up on every test you have done.

The other issue is the broader concern of patient responsibility. Making sure your doctor tells you the results of every test you have done is a reflection of the fact that you are in charge of your health, not anybody else. Your doctor is a critical partner in achieving the best possible health but in the end you are responsible. While this idea may be overwhelming, it is also empowering.

In most areas of daily living we remain independent drivers of our lives — why not in health? We do not go to a car salesman and expect that he or she will decide what car we should buy. Instead we do our own research — going to other car dealers, checking out reviews online, talking to friends — before making our decision. This isn’t fundamentally because we don’t trust car dealers (although a healthy skepticism never hurts) but rather because we want the best possible outcome for ourselves and recognize the limitations of relying on just one person. A major reason we don’t do this in health care, I imagine, is because the subject material is perceived as too complex and too specialized.

As anecdotal evidence, the most common test result I get asked about from patients is their weight. Every patient that comes to my clinic gets weighed during check in, and often one of the first questions my patients ask me in the office is “Doc, what’s my weight today?” In addition to measuring our patients’ weights, our triage nurses check heart rate, blood pressure, and, for diabetics, sugar levels, but I don’t typically get asked about these other important health measures — except from patients who are particularly well-informed or involved in their health care.

The implication is that patients are fundamentally interested in their health — they want to take a larger role in it — but they struggle to understand what’s going on and so focus on those things that are most accessible to them such as weight. What I’ve come to realize is that through education it is possible to bring people in. Savvy diabetics not only ask me what their sugar level in clinic was today but also about their most recent hemoglobin A1c (three-month running average of sugar levels in the blood). Likewise, patients who have a basic understanding of cholesterol ask specifically about their LDL and HDL cholesterol and about how their triglycerides are doing.

While medicine is complicated, often it can be simplified into its essential components. Cervical cancer is complicated but the understanding that Pap smears test for early signs of cervical cancer, are needed in most women every 1 to 3 years, and require follow up if abnormal can be readily communicated. The result is that informed patients not only ask “Hey Doc, what did my last Pap smear show?” or but also “Hey Doc, it’s been over two years since my last Pap smear. Is it time for another one?” And in this way they not only become more active participants in their health care but also serve as a redundant system for making sure their health care is on track.

In the end we can argue about whose responsibility it is to share important health information and follow up on abnormal test results. Yes, doctors need to do better. Yes, the health care system needs to be fixed. But until then, there are steps we all can take to work together to minimize errors. We can all take a lesson from the three patients who emailed me for their test results: know what tests you are having done, seek to have a basic understanding of them, and be sure to follow up on the results.