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.

Shantanu Nundy is an internal medicine physician who blogs at BeyondApples.org.

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  • stargirl65

    In my office patients are told that “No news is simply no news.” They are told that if they don’t get a letter regarding a test result then they should contact us. The results could have been lost, sent to the wrong doctor, put in the wrong chart, mailed to an old address, lost in the mail, etc. We have reminders to look for tests if they do not show up after a certain amount of time, but no system is perfect.

    It is partly the patient’s responsibility to participate in their health care. Health care should not be a passive activity for the patient, they need to be an active participant. I am responsible for managing over 2000 persons health care. They are only responsible for one (usually). They need to take some responsibility.

  • Fray

    You call for you test results and take lip from the nurse for bothering her.

    I just request medical records.

  • Anonymous

    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?”

    Really odd. Most people know how much they weigh (though their notions of whether or not they are fat may not match up with the usual guidelines). It is the other screenings (HDL, LDL, triglycerides, blood sugar, etc.) that are not as easily accessible at home that one would go visit the doctor every so often for.

  • W

    Regarding the first comment, “No news is good news” seems like pretty dangerous advice to be giving.

    By the time I’ve paid a “gatekeeper” primary care doctor to refer me to a (ka-ching) specialist who orders a (ka-ching) test that must be read by a (ka-ching) pathologist, I’ll selfishly admit to feeling like I should be informed of the results voluntarily.

    Realistically, though, I appreciate that Stargirl has a point. And if the office will help manage my expectations by communicating what I’ll need to do in order to get my results, rather than leaving me to waste my time stumbling through a medical bureaucracy, then good for everyone.

  • stargirl65

    W-
    If you read carefully you will see I said “No news is simply no news.” I feel that all test results should be related to a patient. If the tests ordered are complicated and very technical then even a note saying everything is normal or stable or unchanged is good.

    Fray-
    The doctor can charge you for copies of your records. Laws vary by state but start at about $15.00 to retrieve the record and then 35 cents per page. Often this is waived for a single test.

  • http://www.brightonyourhealth.com Mary Brighton, MS, RD

    No news is good news is never good enough for me. People DO need to take control of their own health and not rely on medical professionals to do it. I have never had a problem asking for a copy of blood results or doctor consultation report in America nor France (where I live). In fact, in France they encourage you to pick up your results (even X-rays) within a week so that you have them at home, handy for that next medical appointment.
    Each family member should have their own health file, with blood results, doctor consultations etc..all put in descending order (last result on top). Each medical visit, bring that file with you.
    Had a mammogram 5 years ago? Bring the results and scan with you to show the doctor…Had an abnormal sugar result 2 years ago but got regulated? Bring those results with you, you may need your sugars checked again.
    YOU ARE HELPING YOUR DOCTOR and yourself!
    In France, they are looking into a system where each medical card will have consultation write-ups, blood results, scan results directly on it. Big questions there for other issues. BUT, this card-if it goes through will allow less medical errors, less costs (less unnecessary tests ordered), better global view of that person’s health.
    My friends think I am “neurotic” (not really :) ) because I take full control of my and my 4 kids health. I call it having personal health reform. For example, I know my blood type, medical history, etc…plus that of my children.
    YOU MUST! you life can depend upon it…
    Mary Brighton, MS, RD

  • Fray

    “Laws vary by state but start at about $15.00 to retrieve the record and then 35 cents per page. Often this is waived for a single test.”

    I keep a file of my medical records anyway. Otherwise, I risk inappropriate care…an EMR doesn’t guarentee a doctor will read it.

  • Erica

    I have a copy of every test result, scan etc in a folder from years back. This way when I move, I live in another country right now, I can provide copies rather than just relying on memory. Or even when I move in the US. And it’s also good to sit with your doctor and understand the test results and what they mean.

    And to in regards to the actual title of this blog…just give it to us straight. Tell us the facts and let us ask questions.

    Additionally, I’m quite tired of the word “patient”. Over time I’ve come to believe it leaves us unimpowered. Using the writer’s example of a car dealership…we are customers AND considering the cost of all things healthcare-related, this is the one place we pay quite a bit, but yet we’re not called customers. Doctors are are service providers. Being a customer gives us a sense of empowerment!

    • stargirl65

      You say that you pay a lot for healthcare. Do you pay your doctor directly? Most likely not. You pay your insurance company a lot usually. Your doctor gets very little. The overhead for a doctor’s visit is over 50% and often over 60%. This means your doctor is getting less than half of what is paid by your insurance company.

      Customer also implies that you go to the doctor to get something and you tell them what you want. Most patients do not know what they really want. Often patients also ask for things that are inappropriate, or not what they really need.

      Also, I am responsible for your care even if you don’t ask for it. Example, if you don’t get your pap smear because you never asked for it and I never offered or recommended it at visits for other care then I am responsible if cancer shows up. I may have done everything the customer ordered, but I am expected to do more. The only way we can look at providing only what the customer ordered is via tort reform.

  • tgottsdo

    Erica,

    I understand what you’re saying about the word “patient”. But the doctor-patient relationship doesn’t have to be a paternalistic one… its really up to you. There’s a special relationship that exists between doctor and patient and hopefully it is more than your relationship with a car salesman. I’m not selling you anything… I’m simply there to advise you and be your partner in healthcare matters. I really don’t know when I see a patient what kind of insurance they have or how much I’m going to get paid for that visit. I simply want to do the right thing and do it well. If you don’t think your doctor respects you or doesn’t treat you like a partner then find another doctor. But also understand that a doctor’s office isn’t a McDonald’s drive through… we don’t take orders.

    BTW, I would love it if patients were more like customers… then I would get paid for my services at the time they were rendered. But thats a discussion for another time.

  • http://pulse.yahoo.com/_H3SO2JRBZPM3NNGE4MOZ7MHCUA greydoggrrl

    I’m VERY fortunate to have primary Drs. who – after getting results that were of any concern- actually CALL ( or if it’s good news a staff member calls). If it’s for results from  tests done for a physical, and not to rule out anything, they just send the info by mail in a brief note. They are actually all superb, as physicians and people. 

    I mostly see my internist at a yearly check up – and have taken to setting up a single sheet status update (bullets! – not a memoir), plus any questions which I’d otherwise forget about at the office. Lists of vitamins,meds,other drs seen, drinking and eating behavior, the pulled hamstring, that fall on my head last July, the dozen tick bites, the background noise of life. Any thing really bothering me is at the top. It makes ME take the time to think ahead of time, and (it may) save her some time, or clue her in about some change that may be important. And show her if I followed her advice last time… It helps a bit with that thing a lot of us patients do that irks Drs…. as you are walking out the door, visit over, we finally ask some big (to us) question.  For awhile I was good about getting records ( recommended by a former internist) but let it go… I know I should, this will remind me.  As for paying as you go – I see a psychiatrist twice yearly now basically for depression med checks.He has no staff.  I pay him; he charges less than he would if he had to bill. No overhead there. But I could not possibly afford all the charges from those very good Drs. and their group. Also – I am lucky to be covered by a pretty good plan, but when I see insurance statements  - impossible to decipher without a code book, and seeming to reflect maximum billing by biller contracted by said Medical Group (in another state), countered by delays and partial or complete rejections by insurer ( with warnings to me that If I do not question this in writing immediately I am responsible for all, even tho’ it’s impossible to tell the basis of their decision, etc.), the entire system is a money game. And most doctors AND patients have no control over it.

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