My friend, Louise, was diagnosed with cervical cancer a few years ago. The good news is that she was diagnosed early. The bad news is that she learned too late that both her Pap test and HPV test were abnormal a year earlier and she could have been spared a hysterectomy if only she had known. Yet Louise was like so many others that believe when it comes to hearing about test results, no news is good news. She never called back the office of her gynecologist to learn of her results. Her doctors apparently sent her a letter notifying her of the findings, but she never received it. The commonly held belief among patients and doctors’ offices that “no news is good news” couldn’t be farther from the truth. When it comes to test results, no news is just that, “no news”. All too often abnormal test results get filed, misplaced, or simply ignored. Patients may not learn of their abnormal results until it is too late.
A recent study in the September 28th Archives of Internal Medicine reminded me that even with the use of sophisticated electronic medical records, abnormal test results are too often ignored. Researchers at an outpatient facility within a Veteran’s Administration (VA) Hospital studied a critical alert tracking system to see if the results of abnormal x-ray reports would be communicated to patients in a timely fashion. They believed that although communicating abnormal test results in a highly fragmented paper system of medical records could be challenging (a number of previous studies have found that doctors don’t follow up or alert patients to abnormal test results up to 30% of the time even when failing to act on these abnormal results could have disastrous consequences), the advanced electronic medical record system in the VA system where results could be automated and doctors alerted would eliminate this problem. They were surprised to find out how wrong they were.
Their research showed that critical x-ray reports were not communicated back to the patient or “addressed” in any way by the ordering physician or specialist in about 8 out of every 100 tests. When two doctors (rather than only one) were told of the abnormal results there was an even greater chance that the test results would simply “fall through the cracks”. Neither doctor took responsibility – perhaps believing the other doctor would. Only when a phone call was made in addition to the alert by the radiologist to the ordering physician was follow-up more likely.
Just about each one of these patients with an abnormal x-ray test result had some important outcome or worsening of their condition as a result. Imagine learning too late that your chest x-ray or CT scan done months to years earlier showed an early lung cancer? Or that your mammogram showed an abnormal finding that needed further testing? Or your uterine ultrasound showed thickening of the lining suggestive of early cancer? Or an abnormal blood test result suggested a problem with your liver? During my father’s final illness, a blood test done because he was not eating and appeared dehydrated showed a dangerously high blood potassium level and evidence of kidney failure that needed immediate attention, yet my sister, his health buddy, was told his tests were normal. (I believe this failure to address his critical condition in a timely fashion led to the cascade of events that ultimately led to his death.)
So rather than wait for the health care system to figure out how best to tell patients about important test results so that no more patients fall through the ever widening cracks, I have some very specific advice that could save your life or the life of someone you love and care for. Begin by keeping your own medical record.
It is estimated that about 80% of the information a doctor relies on to make a diagnosis comes from your medical history and what is in your medical records. But no one doctor or hospital is likely to have a complete copy of all your medical records – and too often the information is incomplete, inaccurate or simply not read. Furthermore, remind yourself that it is your health that is on the line. Having a copy of your information helps you see that nothing in your care is missed and that every test result is read and compared to previous readings. Remember that copies of all the information in your medical record are rightfully yours. Getting your medical records is easier than you think. With each and every doctor visit, bring a copy of your medical file and a self-addressed stamped envelope. Hand the envelope to your physician and ask for a copy of every test result, x-ray report, EKG, specialist consultation report or hospital discharge summary. Never assume that no news is surely good news. If you don’t hear back about your recent test results after a week or so, telephone the office to ask again that the results be sent to you. Remember that your critical information could easily fall through the cracks.
Once you begin to collect your records, it will be your job to see that every doctor, hospital or health practitioner takes a good look at the information in your medical file so that you can get the best care possible. This is breast cancer awareness month. Women can begin by asking for copies of their mammogram reports when they have their next mammogram (the actual x-rays can stay with the x-ray department unless you are moving or changing hospitals or x-ray centers). A letter stating your mammogram is normal is not enough. You want an actual copy of the radiologist’s findings to keep in your file. I have developed a sample letter that you can use to request your reports, sample letter requesting your medical records. To learn more about how to collect, read and organize your medical records – visit me at www.drsavard.com and click on “Dr. Marie’s free Personal Health Record System.”
As always, I am happy to answer any of your questions or concerns.
Dr. Marie Savard, M.D.
ABC News Medical Contributor