Underappreciated Harms of the Electronic Medical Record
Part II: Immediate Access to Test Results
I did my residency at Beth Israel Hospital in Boston. Some people think of it as The House of God, I think of it as the home of Open Notes.1 Dr. Tom Delbanco was the chief of General Internal Medicine while I was there and was already advocating that patients have access to their medical records. He encouraged me to document clinic visits in notes that I’d be comfortable with my patients reading. He explained to me that not only is this the right thing to do but also that “patients will read the notes, or at least their lawyers will.” In this wonderful article, Dr. Delbanco explains the philosophy behind open notes.
I completely embrace the concept of open notes. When I document about a patient, I am writing about a person. This person deserves to understand my thinking about their health. Yes, I occasionally hold things back – if I think there is a small chance of a terrible diagnosis, I see no reason to share this possibility – but the chart belongs to the patient.
Laws and mandates are complex but most institutions have gone far beyond open notes and now release most results as soon as they are available. I am convinced that this does more harm than good. Like notes, test results belong to the patient. Nothing should be kept from them. But results are complicated. It has taken me decades to understand the nuance of results, including:
the complexity of normal -- standard deviations, differentiating normal variance from disease, and how cut points are determined;
how to interpret normal, age-related changes in results;
how Bayesian reasoning plays into to test interpretation;
the importance of considering present values in light of those from the past.
Given this complexity, patients are constantly confused or frightened by results. This confusion creates stress and anxiety for patients and extra work for their doctors providing reassurance about normal or unimportant findings.
Here are some of the reasonable, but totally avoidable, questions I’ve gotten in the last few weeks. My “responses” are italicized.
“My Hgb A1C is abnormal at 5.8. Do I have diabetes?”
No. 5.8 would have been considered normal until just a few years ago. Risk does increase as the A1C climbs, but there is no tenth of a point when the risk suddenly jumps. We don’t know if intervening on an A1C of 5.8 helps. If it does, the NNT is enormous. Just keep trying to exercise more and limit the concentrated sweets.
“My chest x ray says I have COPD. How can this be? I have never smoked. What should we do?”
You do not have COPD. COPD is not a diagnosis made on a CXR. You have no risk factors or symptoms.
“My brain has diffuse volume loss (or nonspecific white matter changes), do I have dementia?”
You do not. I can only hope to be as sharp as you are when I am 88. In fact, I’m sorry I am not as sharp as you are now, and I am 58. This is normal aging of the brain.
“My GFR is abnormal. I looked it up and I have stage 3 chronic kidney disease. Why have you never told me about this? I looked back and it seems like my GFR is falling. It is 58 now while it was 64 ten years ago?”
You GFR is calculated from a formula that includes your age. Your creatinine has been rock-stable. You have stayed in good shape. Your GFR falls a bit as your age increases. You have not risk factors for kidney disease. Your kidneys will outlive you.
Why is my mean corpuscular hemoglobin high?
I don’t know. The rest of you blood counts are perfect. Your MCH has always been at, or just above, the upper limit of normal. This is just you.
What are we going to do about that calcium in my aorta (cyst in my kidney, 4 mm mass on my adrenal)?
Nothing (nothing and nothing).
One can argue that forcing these conversations is net positive. Patients deserve to have these conversations to learn about the intricacies of their health. Patients may also take more time to study their results and thus might discover things that their doctor misses. Patients may even see time sensitive abnormalities and react to them before a doctor does.
These points are all valid, at least theoretically. At the risk of jinxing myself, I can say that in 30 years, only once did a patient call attention to a result I had misread. (This lead to work up of what turned out to be a false positive — I got lucky). Never have I been alerted to a result that I needed to see earlier. Yes, learning more about the tests is good, but this comes at the cost of patient anxiety and provider exhaustion.
The EMR has made medical care better and safer. Patients have better access to their providers and their medical records enabling them to be more involved in their care. 24-7-365 electronic EMR communication (last week) and immediate access to test results (this week), however, causes harm to patients, doctors, and nurses, beyond the benefits they provide. We need to carefully roll back these “advances”.
I’ve never been able to finish The House of God but when someone writes LOL, I still think they mean little old lady.
I am a retired physician so I have more tools and understanding to interpret my physicians' notes on MyChart. Sadly, even though I have a panel of superb specialists, the EMR exposes a fraud that almost all of them share -- the template of a full physical exam, sometimes when I have not even been touched. I know that the detail of the report is geared to get a higher insurance payment but the copy and paste and use of templates already filled out has corrupted medical practice. The extent to which my team of physicians have come to limit their physical exams is shocking to me. Note that every physician -- likely about 8 in the last 12 months -- has documented a normal abdominal exam and not one of them touched my belly! I was brought up to respect good manners and utter honesty! The EMR has corrupted the physician-patient relationship.
I love this thread/series.
I read "We don’t know if intervening on an A1C of 5.8 helps. If it does, the NNT is enormous"...and if I were the patient, I would not know what NNT is, ha ha ha. It would mean a google search or another email to find out what NNT is!
As a PT, I spend a lot of time dispelling myths due to imaging. I only wish the neurosurgeons would either read my notes, or call me. The xray reads severe OA of the spine, the MRI reads spondylolisthesis Grade 2, moderate foraminal narrowing (not even in the area that would be associated with the current symptoms/presentation). Yet the patient is now convinced she has a severe problem. The neurosurgeon is now offering this patient surgery. And a good history would show this almost 80 yo woman has NEVER had back pain until 1 month ago. So the changes on imaging couldn't explain this presentation. But a good history to show stress related to a dental procedure and family stress could be a source of symptoms. And if you can do a half kneeling squat on both legs with no pain, and I were a neurosurgeon, I wouldn't operate on an anxious lady who has NEVER had back pain until now. But that is just me. And this patient is convinced, it is severe, that is what the xray said!
And I did have a friend whose doc never read the xray, which showed something suspicious in her lungs on xray. The patient finally read the result 6 months later because she was still short of breath (she never looked at it before this later date). It did turn out to be stage IV lung CA. Not saying 6 months of an earlier diagnosis would have changed the trajectory. But I bet it nagged the patient until she passed. Maybe if she had been reading the results, she would have asked sooner. And then maybe that would have resulted in more devastating treatments now that I am saying this. :(