Totally with you Dr. GBM! As a patient and retired nurse what you point up has driven me to distraction. I don’t think you mentioned either, many of the charges that turn up on the EOBs are from doctors I’ve never heard of let alone met. Because I have some healthcare experience as a nurse I can make my way around and generally get my needs met. But I do spend a lot of time helping friends and family understand their records.
I agree with the test results, etcetera; but, you really owe it to yourself to finish "The House of God". I read it while in medical school, and re-read it a couple of years ago. It certainly has its prurient and profane moments, but still strikes some resonant chords.
EMR notes are one of the worst things that has happened to medicine. You miss the forest for the trees. We lie and we make more mistakes because we're more focussed on form rather than function. Has no one read "The iPatient?" Less is still more in medicine as in most serious affairs.
I absolutely agree - I tell people the words medical or health should be replaced with "billing". These systems should work for us to help deliver better care and take some cognitive burden away from us, but it is the other way around.
Most of the patients I see have either spurious concerns, or, worse, no verbalized concerns. I think that the patients who are prone to getting concerned will be concerned of anything. A smile that seemed too long will make them think you are excessively compassionate, and they are about to die. There is little I can do to change human nature, and I just do my best to refocus the concerned person towards what we can do going forward.
But, as a patient, I'd rather be concerned about technical information, than about lack of information.
Wow, this opened the eyes of the civilian reader in the audience, so to speak... At Angel House in SFL, my Assisted Living home, we do a lot with diet, hydration, supplements, so we request copies of labs. But other than our visiting ALF MD, some residents go to specialists and 1 daughter refuses to get mom traditional Medicare, opting for the HMO clinic and precluding us getting her mom PT, Memory Training, MH Therapy, OT and more, In her Home... So she declines faster, when I can't get info to get her Free/Covered Help to slow her decline and enhance her QOL...
Now I realize Each provider has their Separate EMR that is Not shared - But I know who sees
(music emoji) Every claim we make, every move we make, they've been watching us... Yeah, Insurance has All that and they See it Everywhere in that self-interested world of institutionalized extortion. OK, so the insurance company knows a Lot more about Our records than We do... Evidently now I need to request from each office (recent cataract surgery w/outpatient facility, the surgeon and the opthalmologist group I previously visited, rejecting the 'factory' approach/system)
I learn every time I read this blog. Sometimes it's something I can use to help our residents. More often it's frustrating a dead end, but it keeps things profitable for what a friend calls the "shitstem", and I PC-reluctantly call the medical machine.
Vince's experience is something that can be very common! Yikes.
I wish I could get my medical records. I had a bad reaction to anesthesia, the doctor refused to believe I had a drug reaction and would not tell me the name of the drug. Now I will never have any procedure that requires anesthesia or any injection for fear of the drugs. I refuse to take a stress test because it requires an injection of some sort.
My son had a brain tumor which turned out to be fatal. the test results were on MYChart for three days before he was able to talk to his DR. Additional emotional pain that was not needed. At least talking to the Dr, while not good news, did give him some reassurance that the medical pros were going to do as much as they could to help him. In cases like this it seems their should be a "see Dr first before releasing results" setting on the electronic systems.
I recently had a mychart exchange after getting lab results: my first labs after starting a low dose statin revealed my ldl went from 120 to 84. I was pleased. The note sent from my Dr via an assistant said it wasn’t low enough and we would talk about it at the next appointment. 10 months from now. Upon further query she wants me below the “updated” standard of being below 55 and again we’d talk about it next visit. Clearly she’s done explaining. I’m doing my homework.
Excellent essay about this issue. In the spirit of discussion, I will take the other side and argue for complete medical record transparency. It keeps us honest and reminds the medical enterprise that our purpose is to serve the patient.
Yes this creates more burden that has to be dealt with. In my field, it is patients concerned about minor abnormalities that result in reading of "ABNORMAL ECG". Poor R-wave progression being automatically read as "Anterior infarct, age indeterminate" is a common culprit. The fact that this diagnosis could concern a patient has caused me to take more care in reading an ECG as "Abnormal," knowing that it could create concern for the patient and some wasted time for the physician. So I will take the time to change the reading to "PRWP" and the result to "Borderline ECG" or "Otherwise normal ECG" Same for minor T wave abnormalities and borderline LVH.
We need to do this with other kinds of testing, esp. radiology. It creates a feedback loop that will improve patient care and communication between patient and the medical system.
I feel the EMR pain everyday (“why is my MCV low, aren’t you going to fix my mild tricuspid valve regurgitation when you replace my aortic valve?”, “why is there atelectasis and scarring in my lung?”) but I side with you. Transparency is always best. But it is important that the providers get comfortable with the expression “I don’t know, but there is no reason to think it is a problem”. Because that is an uncomfortable truth about 95% of test results we get.
So transparency results in a nice feedback loop, as you indicate. But your feedback loop argument falls short when it comes to radiology reports. Those blasted radiologists rarely if ever talk to the patients!!!!
Yes! I am a patient. I got "anterior infarct, age indeterminate." The electrophysiologist in another town (seen for excessive PVC burden) who ordered the EKG to be done by my local medical center did not contact me to explain. She did not respond to my MyChart query about it. I asked my PCP to order another because of possible lead misplacement, etc. The 2d report said only "poor R-wave progression," but did not mention MI. Confusingly, though: "no significant difference" between the first and second. The same cardiologist in my medical center signed off on both. I was confused. I had to ask around for clarity. Now I know (?): maybe MI and maybe not. I think probably not given my risk factors.
I don't think this is MyChart's fault. A delay would have been fine, but I doubt there would have been good prior communication to steady my nerves before seeing the reports. It is an indictment of poor communication from physician to patient and physician to physician. I learned a lot about EKG's and poor physician communication; I don't think my physicians learned anything. So Yes! again--a better feedback loop would be great. I'm not optimistic.
I’ve been in medicine for almost 30 yrs (internal medicine, cardiology). I used to get all the same questions during a visit when it was paper records. The patients who were motivated and a little bit (understandably) anxious would review their test results and ask me to through them line by line, often distracting from how I thought we should be spending valuable face-to-face time. I don’t think the problem is having more access to their information. The problem is the way medicine uses language and has for generations. And the way we report meaningless values such as mean cell hemoglobin (have never, ever, ever found that one to be useful). Our language and reporting, by design, makes it hard for people to understand. If the chest xray report was helpful it would include the objective information (hyperinflated lungs) and the common differential (COPD, vigorous inhalation) and the chance that the observation was meaningful (positive predictive value of CXR for diagnosing COPD (almost meaningless)). Now it is easier for patients to see their results, which is a good thing, instead of limiting it those who had the time, means, energy to get copies of their paper records.
1) "in 30 years, only once did a patient call attention to a result I had misread"
Dang. I suspect you are not average.
2) Misreading (as in "brain didn't register the number") is one thing. Doctors misinterpreting or withholding potentially valuable info is commonplace IMO.
3) I sure as hell would not want to lose early/immediate access to test/notes. It does inform my future questions. And it leaves no room ambiguity or miscommunication. Especially the case when supporting family members or clients who may be of the type that never come away with an accurate story. Cancer patients especially I find to often be clueless about their prognosis or treatment regime. Reading notes also sometimes tells you the long-term treatment ideas doctors have, and you can know when they are going to string you along with poorly supported approaches.
4) I can imagine on average excess access is in fact a harm. Maybe the solution is to have the access somehow be pushed further back onto the "secret menu". Those who are competent enough to make use of it all would also be competent enough to access it.
5) General education of patients apart from their clinical context would be ideal. Doctors could give seminars to groups of their patients. But probably would be better to just standardize some online learning materials. Access to knowledgeable health advocates/consultants can bridge some of this too.
6) Here's bad good/great/bad/terrible/mediocre idea: Have medical records feed into an AI bot that can answer questions in a general sense, such as "what is not normal for someone else may be perfectly normal for you".
7) Daniel Flora's post makes sense. Sensitive things can be selectively delayed.
I would say everyone should have an online route to access. It is just tweaking the how hard it is to do so. The needlessly anxious types might give up trying to access if the process is too tedious. The types that know they need to know something before going in and talking with thier doctor will jump through the hoops. Not perfect, but maybe a relative improvement.
It occurred to me that I may have misunderstood some of your intent.
Ability to use various devices, operating systems, etc. differs and I've found that just as I seem to get the hang of one system, it gets "upgraded" which almost invariably causes slow-downs as the front desks and phone support staffs learn the new systems; let alone the patients, who may run out of patience as appointments and records are less accessible for a while.
It doesn't help that many of us are less capable/energetic/confident when needing medical assistance.
Not everyone chooses or can afford to own or use a cell phone or even a computer.
Your last sentence, point #5, is exactly what the lab medicine experts at https://www.Lab2Doctors.com are doing. Lab2Doctors.com was created to provide access to knowledgeable lab consultants to bridge the gap between the lab and the clinician.
I have to humbly disagree. I get my test results and do my homework before my appointment. I then have at least a modicum of knowledge on which to base my questions. Before, I got the results cold, and struggled to keep up with the terminology and probably missed or misunderstood a lot of what the doctor said.
Not a perfect system but the more engaged you are with your own health the better in the long run. Seeing the test results before the appointment facilitates that.
Problem is we do entirely too much testing. "Testing" has become a cash cow and should be vastly diminished. With fewer useless tests, you don't NEED to hide stuff from patients.
Great point - the longer I have practiced, the more I think carefully before ordering any tests. Generates, cost, downstream work, and potential anxiety for the patient.
This reads like a priest defending keeping the Bible in Latin because it will harm ordinary people if they gain access to the holy words themselves. AI will be explaining these results to people before you can blink. It already is. The days of doctors as repositories of all wisdom are over.
Totally with you Dr. GBM! As a patient and retired nurse what you point up has driven me to distraction. I don’t think you mentioned either, many of the charges that turn up on the EOBs are from doctors I’ve never heard of let alone met. Because I have some healthcare experience as a nurse I can make my way around and generally get my needs met. But I do spend a lot of time helping friends and family understand their records.
I agree with the test results, etcetera; but, you really owe it to yourself to finish "The House of God". I read it while in medical school, and re-read it a couple of years ago. It certainly has its prurient and profane moments, but still strikes some resonant chords.
EMR notes are one of the worst things that has happened to medicine. You miss the forest for the trees. We lie and we make more mistakes because we're more focussed on form rather than function. Has no one read "The iPatient?" Less is still more in medicine as in most serious affairs.
I absolutely agree - I tell people the words medical or health should be replaced with "billing". These systems should work for us to help deliver better care and take some cognitive burden away from us, but it is the other way around.
Most of the patients I see have either spurious concerns, or, worse, no verbalized concerns. I think that the patients who are prone to getting concerned will be concerned of anything. A smile that seemed too long will make them think you are excessively compassionate, and they are about to die. There is little I can do to change human nature, and I just do my best to refocus the concerned person towards what we can do going forward.
But, as a patient, I'd rather be concerned about technical information, than about lack of information.
Wow, this opened the eyes of the civilian reader in the audience, so to speak... At Angel House in SFL, my Assisted Living home, we do a lot with diet, hydration, supplements, so we request copies of labs. But other than our visiting ALF MD, some residents go to specialists and 1 daughter refuses to get mom traditional Medicare, opting for the HMO clinic and precluding us getting her mom PT, Memory Training, MH Therapy, OT and more, In her Home... So she declines faster, when I can't get info to get her Free/Covered Help to slow her decline and enhance her QOL...
Now I realize Each provider has their Separate EMR that is Not shared - But I know who sees
(music emoji) Every claim we make, every move we make, they've been watching us... Yeah, Insurance has All that and they See it Everywhere in that self-interested world of institutionalized extortion. OK, so the insurance company knows a Lot more about Our records than We do... Evidently now I need to request from each office (recent cataract surgery w/outpatient facility, the surgeon and the opthalmologist group I previously visited, rejecting the 'factory' approach/system)
I learn every time I read this blog. Sometimes it's something I can use to help our residents. More often it's frustrating a dead end, but it keeps things profitable for what a friend calls the "shitstem", and I PC-reluctantly call the medical machine.
Vince's experience is something that can be very common! Yikes.
I wish I could get my medical records. I had a bad reaction to anesthesia, the doctor refused to believe I had a drug reaction and would not tell me the name of the drug. Now I will never have any procedure that requires anesthesia or any injection for fear of the drugs. I refuse to take a stress test because it requires an injection of some sort.
I tend to think it is entirely illegal for a doctor to withhold your records.
My son had a brain tumor which turned out to be fatal. the test results were on MYChart for three days before he was able to talk to his DR. Additional emotional pain that was not needed. At least talking to the Dr, while not good news, did give him some reassurance that the medical pros were going to do as much as they could to help him. In cases like this it seems their should be a "see Dr first before releasing results" setting on the electronic systems.
I recently had a mychart exchange after getting lab results: my first labs after starting a low dose statin revealed my ldl went from 120 to 84. I was pleased. The note sent from my Dr via an assistant said it wasn’t low enough and we would talk about it at the next appointment. 10 months from now. Upon further query she wants me below the “updated” standard of being below 55 and again we’d talk about it next visit. Clearly she’s done explaining. I’m doing my homework.
Time for a different doctor?
Excellent essay about this issue. In the spirit of discussion, I will take the other side and argue for complete medical record transparency. It keeps us honest and reminds the medical enterprise that our purpose is to serve the patient.
Yes this creates more burden that has to be dealt with. In my field, it is patients concerned about minor abnormalities that result in reading of "ABNORMAL ECG". Poor R-wave progression being automatically read as "Anterior infarct, age indeterminate" is a common culprit. The fact that this diagnosis could concern a patient has caused me to take more care in reading an ECG as "Abnormal," knowing that it could create concern for the patient and some wasted time for the physician. So I will take the time to change the reading to "PRWP" and the result to "Borderline ECG" or "Otherwise normal ECG" Same for minor T wave abnormalities and borderline LVH.
We need to do this with other kinds of testing, esp. radiology. It creates a feedback loop that will improve patient care and communication between patient and the medical system.
I feel the EMR pain everyday (“why is my MCV low, aren’t you going to fix my mild tricuspid valve regurgitation when you replace my aortic valve?”, “why is there atelectasis and scarring in my lung?”) but I side with you. Transparency is always best. But it is important that the providers get comfortable with the expression “I don’t know, but there is no reason to think it is a problem”. Because that is an uncomfortable truth about 95% of test results we get.
So transparency results in a nice feedback loop, as you indicate. But your feedback loop argument falls short when it comes to radiology reports. Those blasted radiologists rarely if ever talk to the patients!!!!
Yes! I am a patient. I got "anterior infarct, age indeterminate." The electrophysiologist in another town (seen for excessive PVC burden) who ordered the EKG to be done by my local medical center did not contact me to explain. She did not respond to my MyChart query about it. I asked my PCP to order another because of possible lead misplacement, etc. The 2d report said only "poor R-wave progression," but did not mention MI. Confusingly, though: "no significant difference" between the first and second. The same cardiologist in my medical center signed off on both. I was confused. I had to ask around for clarity. Now I know (?): maybe MI and maybe not. I think probably not given my risk factors.
I don't think this is MyChart's fault. A delay would have been fine, but I doubt there would have been good prior communication to steady my nerves before seeing the reports. It is an indictment of poor communication from physician to patient and physician to physician. I learned a lot about EKG's and poor physician communication; I don't think my physicians learned anything. So Yes! again--a better feedback loop would be great. I'm not optimistic.
There’s a good chance you’d like “Man's 4th Best Hospital” by Samuel Shem, given your training and occasional tangles with bureaucracy
I’ve been in medicine for almost 30 yrs (internal medicine, cardiology). I used to get all the same questions during a visit when it was paper records. The patients who were motivated and a little bit (understandably) anxious would review their test results and ask me to through them line by line, often distracting from how I thought we should be spending valuable face-to-face time. I don’t think the problem is having more access to their information. The problem is the way medicine uses language and has for generations. And the way we report meaningless values such as mean cell hemoglobin (have never, ever, ever found that one to be useful). Our language and reporting, by design, makes it hard for people to understand. If the chest xray report was helpful it would include the objective information (hyperinflated lungs) and the common differential (COPD, vigorous inhalation) and the chance that the observation was meaningful (positive predictive value of CXR for diagnosing COPD (almost meaningless)). Now it is easier for patients to see their results, which is a good thing, instead of limiting it those who had the time, means, energy to get copies of their paper records.
Fascinating vicarious learning.
1) "in 30 years, only once did a patient call attention to a result I had misread"
Dang. I suspect you are not average.
2) Misreading (as in "brain didn't register the number") is one thing. Doctors misinterpreting or withholding potentially valuable info is commonplace IMO.
3) I sure as hell would not want to lose early/immediate access to test/notes. It does inform my future questions. And it leaves no room ambiguity or miscommunication. Especially the case when supporting family members or clients who may be of the type that never come away with an accurate story. Cancer patients especially I find to often be clueless about their prognosis or treatment regime. Reading notes also sometimes tells you the long-term treatment ideas doctors have, and you can know when they are going to string you along with poorly supported approaches.
4) I can imagine on average excess access is in fact a harm. Maybe the solution is to have the access somehow be pushed further back onto the "secret menu". Those who are competent enough to make use of it all would also be competent enough to access it.
5) General education of patients apart from their clinical context would be ideal. Doctors could give seminars to groups of their patients. But probably would be better to just standardize some online learning materials. Access to knowledgeable health advocates/consultants can bridge some of this too.
6) Here's bad good/great/bad/terrible/mediocre idea: Have medical records feed into an AI bot that can answer questions in a general sense, such as "what is not normal for someone else may be perfectly normal for you".
7) Daniel Flora's post makes sense. Sensitive things can be selectively delayed.
Re your number 4: No. Who would be the arbiter of competence to utilize, and as such decide if a patient has access?
To which I add, "average" is an extremely dangerous myth.
I would say everyone should have an online route to access. It is just tweaking the how hard it is to do so. The needlessly anxious types might give up trying to access if the process is too tedious. The types that know they need to know something before going in and talking with thier doctor will jump through the hoops. Not perfect, but maybe a relative improvement.
It occurred to me that I may have misunderstood some of your intent.
Ability to use various devices, operating systems, etc. differs and I've found that just as I seem to get the hang of one system, it gets "upgraded" which almost invariably causes slow-downs as the front desks and phone support staffs learn the new systems; let alone the patients, who may run out of patience as appointments and records are less accessible for a while.
It doesn't help that many of us are less capable/energetic/confident when needing medical assistance.
Not everyone chooses or can afford to own or use a cell phone or even a computer.
Your last sentence, point #5, is exactly what the lab medicine experts at https://www.Lab2Doctors.com are doing. Lab2Doctors.com was created to provide access to knowledgeable lab consultants to bridge the gap between the lab and the clinician.
Thank you
I have to humbly disagree. I get my test results and do my homework before my appointment. I then have at least a modicum of knowledge on which to base my questions. Before, I got the results cold, and struggled to keep up with the terminology and probably missed or misunderstood a lot of what the doctor said.
Not a perfect system but the more engaged you are with your own health the better in the long run. Seeing the test results before the appointment facilitates that.
Dick Minnis removingthecataract.substack.com
Problem is we do entirely too much testing. "Testing" has become a cash cow and should be vastly diminished. With fewer useless tests, you don't NEED to hide stuff from patients.
Great point - the longer I have practiced, the more I think carefully before ordering any tests. Generates, cost, downstream work, and potential anxiety for the patient.
is there evidence for the statement that care is better with EMRs?
This reads like a priest defending keeping the Bible in Latin because it will harm ordinary people if they gain access to the holy words themselves. AI will be explaining these results to people before you can blink. It already is. The days of doctors as repositories of all wisdom are over.