Hornets\’ Nest

Let me kick the hornets\’ nest again.   I still have misgivings about sending information like this to my patients:

How does one not trained in what to overlook interpret the above?  To me, this lab result is entirely expected for this patient – given the other medical history that is there.  My concern is that this will either cause unneeded worry, or it would prompt a phone call to ask about labs that I would be quick to accept.  Yes, there are times when this may help the doctor who overlooked abnormal tests in error, but the majority of abnormal lab values are not significant.  The vast majority are insignificant.  I\’d put the rate at nearly 10:1.

When we e-mail patients their lab results, we have two options: to send the actual report, or send an abbreviated form of it.   Here is what I sent this patient (for these actual labs):

I had a woman complain to me when I didn\’t send her this \”sanitized\” version of her thyroid labs.  She didn\’t understand the lab report and just wanted my explanation.  Which would you rather have?  Do patients really need to know their MCHC, RDW, RBC count, and absolute eosinophil count?  Do they want to?  I don\’t care about those numbers 99.9% of the time I look at them.

Here\’s another example:

\”Doctor!  I am really worried about my Bun Level and Carbon dioxide levels.  I read that these can all mean I am dehydrated!  They also can mean I am going into kidney failure.  I don\’t want to go on dialysis!  And what about the monocytes and MPV levels?  One website I saw said this could mean leukemia.\”

Sound outlandish?  Sound like something that won\’t happen much?  Wrong.  We spend a very large amount of time explaining these basically normal (MPV??  Absolute Monocytes??).  All lab tests need to be put in the perspective of the patient\’s age, disease state, race, and medications they are taking.  They also need to be seen as a single point on the graph and so must be looked at in comparison with previous lab tests.  How would I interpret this?  Normal.

Do you, my readers, REALLY want to see the absolute monocyte counts and MPV?

Here\’s another:

Look at all the extra information put at the bottom of the lab report.  What does it mean?

Most of this is fluff meant to keep the lawyers happy.  The average patient will not quite know where to look here and will either just be confused by it or become anxious and want to question this as being abnormal.  \”I thought you said my diabetes control was good, but the diabetes test was high according to this!\” or \”A hemoglobin of 6.5 is dangerous, isn\’t it?\”  I have had both of these comments from patients.

Here\’s a typical echocardiogram report:

What percent of patients want all of this?  I don\’t!  I really could care less about everything above the \”Impression\” section from the cardiologist.  I was not even aware that pressure had a halftime.  None of these findings are significant.

The cardiologist has to include all of these in his note for herself because of documentation requirements and because the fine details mean something to her.  But they mean nothing to me, and I would prefer just getting the \”Impression\” sent to me.  Why should patients be different from me?

Wouldn\’t you rather get from me something that says: \”Your echocardiogram looked good\”?

I really think that giving full access to all information opens a hornet\’s nest of its own.  We will spend a lot of time educating our patients to the nature of medical information and medical terminology.  Again, I am fine with having folks who feel they need this information; but I am a little skeptical that they really do need it.

I don\’t need most of this stuff, and would be much happier if I got only what I asked for.

112 thoughts on “Hornets\’ Nest”

  1. I much prefer the bottom line. My doctor gave me a form that had my number written in next to the goal for each thing.
    I was under an endocrinologist’s care for a while and learned it was really good in some cases to know what the lab or your doctor’s cut off is, for “normal”.

  2. I much prefer the bottom line. My doctor gave me a form that had my number written in next to the goal for each thing.
    I was under an endocrinologist’s care for a while and learned it was really good in some cases to know what the lab or your doctor’s cut off is, for “normal”.

  3. drowned in numbers

    Thank you for this post. Even though it won’t change the way my Dr. does things, it made me feel better about my complete inability as someone who is not a doctor, nurse, medical or pre-med student to read and understand the number vomit that was thrown at me after getting labs done.
    In June I had a thyroid test done and peed in a cup so that they could look for a possible bladder infection (I was suffering style-cramping abdominal discomfort, still am actually), and a week later in my inbox there was a notice saying that my results were in. For the pee test they gave me my scores on a whole range of things I’d never heard of, and the “normal range”. From there I could deduce for myself that I probably didn’t have a bladder infection, though I spent days trying to figure out why one of my scores was flagged (it was on some substance that can indicate pregnancy, diabetes or an eating disorder. mine was off because I didn’t have time to eat lunch before my midday appointment. I wasted $7 on a home pregnancy test before I could get through to anybody). The thyroid score was just my numbers and some sort of range. It could be the possible range for all scores, or the normal range. There was no interpretation given, and its really hard to get interpretation from the Dr without having to fork over that $30 copay. Two months later I still don’t know whether or not I have a thyroid issue (as my mother, aunt, grandmother and assorted other female relatives do).

    This came up at work yesterday, when we were sent the results of a drug test done on a client that were sent to us with a bunch of numbers that didn’t make sense, were not explained well, and seemed to contradict the result written.

  4. drowned in numbers

    Thank you for this post. Even though it won’t change the way my Dr. does things, it made me feel better about my complete inability as someone who is not a doctor, nurse, medical or pre-med student to read and understand the number vomit that was thrown at me after getting labs done.
    In June I had a thyroid test done and peed in a cup so that they could look for a possible bladder infection (I was suffering style-cramping abdominal discomfort, still am actually), and a week later in my inbox there was a notice saying that my results were in. For the pee test they gave me my scores on a whole range of things I’d never heard of, and the “normal range”. From there I could deduce for myself that I probably didn’t have a bladder infection, though I spent days trying to figure out why one of my scores was flagged (it was on some substance that can indicate pregnancy, diabetes or an eating disorder. mine was off because I didn’t have time to eat lunch before my midday appointment. I wasted $7 on a home pregnancy test before I could get through to anybody). The thyroid score was just my numbers and some sort of range. It could be the possible range for all scores, or the normal range. There was no interpretation given, and its really hard to get interpretation from the Dr without having to fork over that $30 copay. Two months later I still don’t know whether or not I have a thyroid issue (as my mother, aunt, grandmother and assorted other female relatives do).

    This came up at work yesterday, when we were sent the results of a drug test done on a client that were sent to us with a bunch of numbers that didn’t make sense, were not explained well, and seemed to contradict the result written.

  5. Brillantly put. I can’t imagine or want to think about the number of phone calls I’d get from parents about their kids CBC/CMP/TSH yada yada lab results…

  6. Brillantly put. I can’t imagine or want to think about the number of phone calls I’d get from parents about their kids CBC/CMP/TSH yada yada lab results…

  7. I prefer the bottom line – but the way you have it laid out, not the sorts of bottom line reports I’ve seen that just tell me “your cholesterol numbers are normal” with no indication of where on the scale on normal I might be.
    Then, I also want access to the full reports because I’ve had to bring them to other doctors and have not always been able to get various offices coordinated enough to send each other labwork and test results, especially for older work or on short timelines. And I’ve had experiences when reported ‘bottom line’ results differed from the underlying data, such as the radiologist’s assertion of no meniscus damage post-grade III ACL tear, when my sports med specialist and my surgeon noted otherwise after viewing the MRI images themselves, or various doctors who have reported iron-deficient anemia from my CBC results and missed that the results were indeed normal for my underlying conditions. Make me work for the full results, that’s fine, but I do want to be able to get at them.

  8. I prefer the bottom line – but the way you have it laid out, not the sorts of bottom line reports I’ve seen that just tell me “your cholesterol numbers are normal” with no indication of where on the scale on normal I might be.
    Then, I also want access to the full reports because I’ve had to bring them to other doctors and have not always been able to get various offices coordinated enough to send each other labwork and test results, especially for older work or on short timelines. And I’ve had experiences when reported ‘bottom line’ results differed from the underlying data, such as the radiologist’s assertion of no meniscus damage post-grade III ACL tear, when my sports med specialist and my surgeon noted otherwise after viewing the MRI images themselves, or various doctors who have reported iron-deficient anemia from my CBC results and missed that the results were indeed normal for my underlying conditions. Make me work for the full results, that’s fine, but I do want to be able to get at them.

  9. I’m fine with the bottom line when accompanied by some supporting data, as in your summaries. I am not fine with the bottom line when I get a phone call telling me “your pap negative for cancer,” and then I get a letter telling me it’s dysplastic and I need to come back in. I’m not fine with the bottom line when I get a phone call saying “your rabies test was normal,” and then when I request the actual report, it shows me that my titer is negative when i need it to be positive. My problem is that I’m not being given any reason to trust the information I’ve been provided, so I have to ask for the actual lab reports and make my own interpretation or call my physician to help me interpret it when the results are different from what his staff has told me.
    I feel your pain regarding questions from laypeople, though. I’ve had people freak out after asking to see their pet’s reports and maybe one thing is 0.04 outside the normal range….and an interrogation follows… it does suck.

  10. I’m fine with the bottom line when accompanied by some supporting data, as in your summaries. I am not fine with the bottom line when I get a phone call telling me “your pap negative for cancer,” and then I get a letter telling me it’s dysplastic and I need to come back in. I’m not fine with the bottom line when I get a phone call saying “your rabies test was normal,” and then when I request the actual report, it shows me that my titer is negative when i need it to be positive. My problem is that I’m not being given any reason to trust the information I’ve been provided, so I have to ask for the actual lab reports and make my own interpretation or call my physician to help me interpret it when the results are different from what his staff has told me.
    I feel your pain regarding questions from laypeople, though. I’ve had people freak out after asking to see their pet’s reports and maybe one thing is 0.04 outside the normal range….and an interrogation follows… it does suck.

  11. I must be the unusual patient. I prefer to have a copy of the full report. Now, admittedly, after the first lab results came in after I had started new medications for RA, I did ask my rheumatologist about the values which were out of the ‘normal’ range. But then I accepted the answer that she considered them normal and expected for someone with my conditions and taking my medications. That’s fine.
    Just for my own record, I even keep a spreadsheet in which I input the values for each bi-monthly routine bloodwork. By having a number of years of this information, I can see the trends of which values change as my conditions flare. It is rather validating to see that an MS or RA relapse can be supported by bloodwork.

    This just helps me stay a more educated patient, but I’ve been told that I’m not ‘the normal’ patient. I obtain and keep all MRI reports also.

  12. I must be the unusual patient. I prefer to have a copy of the full report. Now, admittedly, after the first lab results came in after I had started new medications for RA, I did ask my rheumatologist about the values which were out of the ‘normal’ range. But then I accepted the answer that she considered them normal and expected for someone with my conditions and taking my medications. That’s fine.
    Just for my own record, I even keep a spreadsheet in which I input the values for each bi-monthly routine bloodwork. By having a number of years of this information, I can see the trends of which values change as my conditions flare. It is rather validating to see that an MS or RA relapse can be supported by bloodwork.

    This just helps me stay a more educated patient, but I’ve been told that I’m not ‘the normal’ patient. I obtain and keep all MRI reports also.

  13. I am shocked you are still at this. This isn’t about what you think is “best” for the patient all by yourself. I totally agree that in the absence of a reason/request, the bare essentials/summary is what’s indicated (and appreciated), but when it’s specifically requested, you don’t have the right to withhold labs like these in the paper world, and I am really beside myself why you think you would entertain why you’d think that would change in the digital one.
    Grandma who is checking up on her breast biopsy probably doesn’t need or is asking to see the MCV/MCHC/etc. but the chronic anemic patient who knows exactly what to look for does. Would you hide the glucose/K+/HbA1c from a diabetic? Of course not. Most chronic dz sufferers know what to look for and are good about understanding there’s a lot in those reports outside their problem. No one “subset of the data” brushstroke characterizes all patients.

    Again, I find it so perplexing that you are so progressive in so many ways in your thinking on medicine and on medical practice, yet so retro-paternalistic in this area.

  14. I am shocked you are still at this. This isn’t about what you think is “best” for the patient all by yourself. I totally agree that in the absence of a reason/request, the bare essentials/summary is what’s indicated (and appreciated), but when it’s specifically requested, you don’t have the right to withhold labs like these in the paper world, and I am really beside myself why you think you would entertain why you’d think that would change in the digital one.
    Grandma who is checking up on her breast biopsy probably doesn’t need or is asking to see the MCV/MCHC/etc. but the chronic anemic patient who knows exactly what to look for does. Would you hide the glucose/K+/HbA1c from a diabetic? Of course not. Most chronic dz sufferers know what to look for and are good about understanding there’s a lot in those reports outside their problem. No one “subset of the data” brushstroke characterizes all patients.

    Again, I find it so perplexing that you are so progressive in so many ways in your thinking on medicine and on medical practice, yet so retro-paternalistic in this area.

  15. At the hospital I work in, we delay the results by 7 days, so that the patient will have time to talk to their doctor, but then have the full results later. That process is still somewhat new though.

  16. At the hospital I work in, we delay the results by 7 days, so that the patient will have time to talk to their doctor, but then have the full results later. That process is still somewhat new though.

  17. It seems to me that you are going to have a wide range of patient preferences regarding the amount of detail they receive about their lab tests. I want to know the exact values and the specifics but even the summary numbers would freak out my mom. Since it would not be practical to ask each patient how much detail they want and try to personalize every dissemination of results, you need something to accommodate the entire range. (MUCH easier said than done!)
    When presenting patients with a report they must interpret on their own (as opposed to a nurse calling them with it or you going over it during an appointment) I would suggest a three tiered approach. So a report might look something like this:

    We have received the results of your recent lab tests. Your cholesterol, electrolytes and kidney function look good. You appear to have mild anemia. Please call the office to schedule a non-urgent follow-up appointment at (xxx) xxx-xxxx.

    For your information, here is a summary of the results and goal value ranges. If you would like a more detailed copy of this report for your records, please call the office to request one.

    [INSERT YOUR SUMMARY HERE]

    Obviously, you change the wording for the different tests and desired patient response. If they need to be seen immediately because something scary turned up and they were not contacted in person, you change “non-urgent” to “immediate” and if all is fine and they don’t need to do anything about it at all you say, “You do not need to take action on this information.” and then something about calling if they have any questions. If they should have it repeated at whatever interval, you put that in there. That way the people who only want the “Was the test okay or not?” information can stop reading and ignore the rest and the people who want an idea of where in the ranges they fell have the summary and those who want every little detail can call and get their information.

    Just my opinion, of course, as a patient. I don’t necessarily know how feasible this approach would be and how “typical” patients might react…

  18. It seems to me that you are going to have a wide range of patient preferences regarding the amount of detail they receive about their lab tests. I want to know the exact values and the specifics but even the summary numbers would freak out my mom. Since it would not be practical to ask each patient how much detail they want and try to personalize every dissemination of results, you need something to accommodate the entire range. (MUCH easier said than done!)
    When presenting patients with a report they must interpret on their own (as opposed to a nurse calling them with it or you going over it during an appointment) I would suggest a three tiered approach. So a report might look something like this:

    We have received the results of your recent lab tests. Your cholesterol, electrolytes and kidney function look good. You appear to have mild anemia. Please call the office to schedule a non-urgent follow-up appointment at (xxx) xxx-xxxx.

    For your information, here is a summary of the results and goal value ranges. If you would like a more detailed copy of this report for your records, please call the office to request one.

    [INSERT YOUR SUMMARY HERE]

    Obviously, you change the wording for the different tests and desired patient response. If they need to be seen immediately because something scary turned up and they were not contacted in person, you change “non-urgent” to “immediate” and if all is fine and they don’t need to do anything about it at all you say, “You do not need to take action on this information.” and then something about calling if they have any questions. If they should have it repeated at whatever interval, you put that in there. That way the people who only want the “Was the test okay or not?” information can stop reading and ignore the rest and the people who want an idea of where in the ranges they fell have the summary and those who want every little detail can call and get their information.

    Just my opinion, of course, as a patient. I don’t necessarily know how feasible this approach would be and how “typical” patients might react…

  19. I like and want both. I want the doctor’s “bottom line” interpretation, but I also want complete data, both for my own knowledge and for the ability to provide it to my various other doctors. Different docs have different standards for “normal.” My endocrinologist wants to see different numbers on my thyroid tests than my internist (who has learned to send me a note saying my numbers are within normal range but the endo will likely tweak my meds).
    And while it may be a rare occurrence that doctors fail to note abnormal test results for their patients, it does happen. And it’s happened to me. I request full lab results and test reports on everything these days because of it. And yes, that does mean I occasionally ask about a test result that the lab flags as abnormal and the doc doesn’t mention. But c’est la vie.

  20. I like and want both. I want the doctor’s “bottom line” interpretation, but I also want complete data, both for my own knowledge and for the ability to provide it to my various other doctors. Different docs have different standards for “normal.” My endocrinologist wants to see different numbers on my thyroid tests than my internist (who has learned to send me a note saying my numbers are within normal range but the endo will likely tweak my meds).
    And while it may be a rare occurrence that doctors fail to note abnormal test results for their patients, it does happen. And it’s happened to me. I request full lab results and test reports on everything these days because of it. And yes, that does mean I occasionally ask about a test result that the lab flags as abnormal and the doc doesn’t mention. But c’est la vie.

  21. I don’t think he was implying that he would not give (or even discourage providing) a patient their exact results. I think he meant what to send as a DEFAULT to any Tom, Dick, and Jane that get labs done. He has stated many (MANY!!) times that he wants to give his patients access to their records without freaking them out and overwhelming them and leaving himself legally, ethically and morally vulnerable. The people who request the detailed reports are not likely to be the ones who would stare blankly at a page full of random numbers, unsure of what to do next.

  22. I don’t think he was implying that he would not give (or even discourage providing) a patient their exact results. I think he meant what to send as a DEFAULT to any Tom, Dick, and Jane that get labs done. He has stated many (MANY!!) times that he wants to give his patients access to their records without freaking them out and overwhelming them and leaving himself legally, ethically and morally vulnerable. The people who request the detailed reports are not likely to be the ones who would stare blankly at a page full of random numbers, unsure of what to do next.

  23. I want the actual numbers. My doctor recently ordered some bloodwork and asked if there was anything I wanted to be sure was tested. Because I’ve had a couple years of my iron hovering right below the bottom of acceptable for donating blood, I wanted to know what my iron was. I get back a result that says my iron is “acceptable”. Okay, but what actually IS it? It felt very patronizing to be given the sanitized version when I was hoping for/expecting data.
    Maybe I won’t know what it all means. But I will keep it and compare it to my results next time I have blood tested.

  24. I want the actual numbers. My doctor recently ordered some bloodwork and asked if there was anything I wanted to be sure was tested. Because I’ve had a couple years of my iron hovering right below the bottom of acceptable for donating blood, I wanted to know what my iron was. I get back a result that says my iron is “acceptable”. Okay, but what actually IS it? It felt very patronizing to be given the sanitized version when I was hoping for/expecting data.
    Maybe I won’t know what it all means. But I will keep it and compare it to my results next time I have blood tested.

  25. I want the bottom line. I’ve stated in previous comments to your posts WHY I want them. I’ve been told tests were “normal” which were not (i.e. midnight serum was very high, but was compared to 4 p.m. range…normal is close to zero at midnight).
    I agree with Enrico. Well said.

  26. I want the bottom line. I’ve stated in previous comments to your posts WHY I want them. I’ve been told tests were “normal” which were not (i.e. midnight serum was very high, but was compared to 4 p.m. range…normal is close to zero at midnight).
    I agree with Enrico. Well said.

  27. I have never said I would withhold anything that the patient requested. Really. Plus, I NEVER withhold important results from people.
    The problem is this: when I order lab tests, I get lots of other data along with the stuff I am interested. If I want to know the WBC count, I get the RBC, RDW, MCHC, and Absolute Monocyte count. There is no way for me to only get the WBC. When I want to know the sodium I get the Chloride and Glucose. Sometimes this is harmless, and sometimes even helpful, but I nearly always ignore some abnormals.

    When I order MRI scans, I really don’t want the details of the reading itself; I just want the interpretation. The radiologist is paid to interpret the test for me, so why should I see the other junk above the interpretation? Why does a specialist send an entire H/P to me when I only ever only read their recommendations? Medicine is caught up in an over-documentation addiction that medical professionals have learned to put up with. If patients were routinely given this information, it would raise all sorts of questions and give all sorts of unnecessary fears.

    Here is my bottom line:
    1. Patients should always be given the results of test they have had done.
    2. Those results should give the amount of detail that they request.
    3. All patients should have access to their entire record. They should be able to double-check things and see more detail if they wish.
    4. Just as I don’t want too much detail from specialists, I feel my patients are depending on me to be their translator. I am not “shielding” them from abnormal results; I am using my experience and education to give a trusted interpretation.

    I really think you over-read my intent.

  28. I have never said I would withhold anything that the patient requested. Really. Plus, I NEVER withhold important results from people.
    The problem is this: when I order lab tests, I get lots of other data along with the stuff I am interested. If I want to know the WBC count, I get the RBC, RDW, MCHC, and Absolute Monocyte count. There is no way for me to only get the WBC. When I want to know the sodium I get the Chloride and Glucose. Sometimes this is harmless, and sometimes even helpful, but I nearly always ignore some abnormals.

    When I order MRI scans, I really don’t want the details of the reading itself; I just want the interpretation. The radiologist is paid to interpret the test for me, so why should I see the other junk above the interpretation? Why does a specialist send an entire H/P to me when I only ever only read their recommendations? Medicine is caught up in an over-documentation addiction that medical professionals have learned to put up with. If patients were routinely given this information, it would raise all sorts of questions and give all sorts of unnecessary fears.

    Here is my bottom line:
    1. Patients should always be given the results of test they have had done.
    2. Those results should give the amount of detail that they request.
    3. All patients should have access to their entire record. They should be able to double-check things and see more detail if they wish.
    4. Just as I don’t want too much detail from specialists, I feel my patients are depending on me to be their translator. I am not “shielding” them from abnormal results; I am using my experience and education to give a trusted interpretation.

    I really think you over-read my intent.

  29. This is what I want as well. Just be aware that there is a ton of garbage mixed in with the important info. Much of going through tests by docs is sifting and finding what matters.

  30. “I still have misgivings about sending information like this [full lab report] to my patients…I really think that giving full access to all information opens a hornet’s nest of its own. ” -Doctor Rob
    There are other quotes just like this throughout the piece, and that’s what I’m reacting to. Where to draw the “information overload” line for an acceptable, default reporting paradigm is a great subject for discussion, but that’s not the tone of this post.

  31. “I still have misgivings about sending information like this [full lab report] to my patients…I really think that giving full access to all information opens a hornet’s nest of its own. ” -Doctor Rob
    There are other quotes just like this throughout the piece, and that’s what I’m reacting to. Where to draw the “information overload” line for an acceptable, default reporting paradigm is a great subject for discussion, but that’s not the tone of this post.

  32. This is what I want as well. Just be aware that there is a ton of garbage mixed in with the important info. Much of going through tests by docs is sifting and finding what matters.

  33. I was surprised you said that. I would assume that, and would be happy to send you whatever you wanted. Would you want the full MRI report, or the interpretation? How about the echocardiogram report listed above? I ignore everything above the word “interpretation” so I would assume you would as well.

  34. I was surprised you said that. I would assume that, and would be happy to send you whatever you wanted. Would you want the full MRI report, or the interpretation? How about the echocardiogram report listed above? I ignore everything above the word “interpretation” so I would assume you would as well.

  35. Delaying by 7 days is terrible for me. I had/have Cushing’s Disease (currently testing for recurrence) and am testing. I need my results asap for midnight serum cortisols because that tells me whether I should do a 24-hr UFC. My endo wants me to catch my high cortisols when I test.

  36. Delaying by 7 days is terrible for me. I had/have Cushing’s Disease (currently testing for recurrence) and am testing. I need my results asap for midnight serum cortisols because that tells me whether I should do a 24-hr UFC. My endo wants me to catch my high cortisols when I test.

  37. ah well, see the reply I just posted. 🙂 I KNOW you aren’t withholding or advocating forcibly withholding anything, but I guess I can sum it up by saying that erring on the side of transparency–particularly in today’s legal climate–is probably for the best. Patients are simply going to be more and more informed, and dealing with the vagaries of good and bad information they find is increasingly going to be part of the scope of care.
    I can’t speak to the implications on the practice (do you make them come back in to discuss questions, follow up on phone, reimbursement, etc.), but you’re more than a little innovative. I’m sure you can just roll it some of these realities into patient education materials and avoid some of the obvious. Good luck. 🙂

  38. I am voicing my real emotion about this – which is that patients who want their full MRI or Echo report (when I don’t even want that) rather than the interpretation are overestimating the value of information. They certainly have a right to it, but I have no idea why it would be useful.
    So yes, I am being a touch cynical about the folks who want everything. I get way too much data and would gladly lose a lot of it. More information isn’t always better – in fact it is often worse.

    Paternalistic? I don’t think I have ever been called that. “Mystified” is probably more accurate.

  39. ah well, see the reply I just posted. 🙂 I KNOW you aren’t withholding or advocating forcibly withholding anything, but I guess I can sum it up by saying that erring on the side of transparency–particularly in today’s legal climate–is probably for the best. Patients are simply going to be more and more informed, and dealing with the vagaries of good and bad information they find is increasingly going to be part of the scope of care.
    I can’t speak to the implications on the practice (do you make them come back in to discuss questions, follow up on phone, reimbursement, etc.), but you’re more than a little innovative. I’m sure you can just roll it some of these realities into patient education materials and avoid some of the obvious. Good luck. 🙂

  40. I am voicing my real emotion about this – which is that patients who want their full MRI or Echo report (when I don’t even want that) rather than the interpretation are overestimating the value of information. They certainly have a right to it, but I have no idea why it would be useful.
    So yes, I am being a touch cynical about the folks who want everything. I get way too much data and would gladly lose a lot of it. More information isn’t always better – in fact it is often worse.

    Paternalistic? I don’t think I have ever been called that. “Mystified” is probably more accurate.

  41. I always get a CD with my MRIs and CT scans. I ask for a copy of the report, but I never rely on the report. I’ve had too many reported as “normal” or “clean”, and I send my CDs to a renowned neurosurgeon at M.D. Anderson to read for pituitary MRIs. I always get a second opinion. Sometimes a 3rd. With the last pituitary tumor, I sent my MRIs to 3 top neurosurgeons and all 3 agreed I had a pituitary tumor and where it was. My local radiologist read it as clean. I’ve just sent the latest MRI for the same. And I never ignore anything. 😉
    I do get a lot of support from my doctors, but I find I know more than my PCP with endocrine issues. She agrees.

  42. I always get a CD with my MRIs and CT scans. I ask for a copy of the report, but I never rely on the report. I’ve had too many reported as “normal” or “clean”, and I send my CDs to a renowned neurosurgeon at M.D. Anderson to read for pituitary MRIs. I always get a second opinion. Sometimes a 3rd. With the last pituitary tumor, I sent my MRIs to 3 top neurosurgeons and all 3 agreed I had a pituitary tumor and where it was. My local radiologist read it as clean. I’ve just sent the latest MRI for the same. And I never ignore anything. 😉
    I do get a lot of support from my doctors, but I find I know more than my PCP with endocrine issues. She agrees.

  43. Lisa, I do the same with tracking. I keep spreadsheets. And same with MRI reports. My endo encourages his patients to keep all that. He and I are investigating using Healthvault right now to share it all.

  44. Lisa, I do the same with tracking. I keep spreadsheets. And same with MRI reports. My endo encourages his patients to keep all that. He and I are investigating using Healthvault right now to share it all.

  45. Agree. Chronic disease patients do have more knowledge about their disease than the doctors do a lot of the time. I recoil, however, when someone brings the actual MRI scan to me as a PCP. I have enough information and while I do know the basics of reading an MRI, I don’t think having the study itself is useful. If someone goes to a specialist or for a second opinion, though, I strongly urge them to bring the study itself, not the report.

  46. Agree. Chronic disease patients do have more knowledge about their disease than the doctors do a lot of the time. I recoil, however, when someone brings the actual MRI scan to me as a PCP. I have enough information and while I do know the basics of reading an MRI, I don’t think having the study itself is useful. If someone goes to a specialist or for a second opinion, though, I strongly urge them to bring the study itself, not the report.

  47. Now this gets to the heart of the difference between some patients and the territory of different doctors whom they may see. Patients living with chronic disease have much more personal responsibility in managing their conditions, especially if they have more than one or two.
    I would never expect my PCP to deal with MRI scans, not since the report of one scan in particular which she had ordered led her to refer me to a neurologist. Bada-bing-bada-boom. MS was the following diagnosis.

    Thankfully my PCP and specialists do communicate and share notes regarding my health and care. Within those notes, it is the summary which is important, not necessarily all of the minor details.

    But, personally, I do get a kick looking through the CD of MRI scans and finding the abnormalities which are described in the details of the radiology report. If not for anything but my own entertainment.

  48. Now this gets to the heart of the difference between some patients and the territory of different doctors whom they may see. Patients living with chronic disease have much more personal responsibility in managing their conditions, especially if they have more than one or two.
    I would never expect my PCP to deal with MRI scans, not since the report of one scan in particular which she had ordered led her to refer me to a neurologist. Bada-bing-bada-boom. MS was the following diagnosis.

    Thankfully my PCP and specialists do communicate and share notes regarding my health and care. Within those notes, it is the summary which is important, not necessarily all of the minor details.

    But, personally, I do get a kick looking through the CD of MRI scans and finding the abnormalities which are described in the details of the radiology report. If not for anything but my own entertainment.

  49. It seems like a minority of us (including me) want the full Monty, most patients want the doctor’s summary & interpretation, and some (perhaps primarily older patients, like my mom) just want to hear “Your tests were all normal” or “Your A1C is higher than I’d like. Please make an appointment to come in again within x weeks so we can adjust your medications.”
    The challenge, I suppose, is for the developers of EMRs to design them such that patients who access them can find what they want. However, I can’t imagine that the kind of patient who only wants to hear “Your test was normal” would even bother accessing an EMR, so you probably don’t need to worry about them. I also think that patient access to the full record will only be a problem initially, in most cases. Just as you ignore extraneous data and focus only on what you want to know in the lab reports, patients will also learn to ignore all the noise and focus only on the signal. It may cost patients and doctors some wasted time and worry, but I think this will resolve itself fairly quickly.

  50. It seems like a minority of us (including me) want the full Monty, most patients want the doctor’s summary & interpretation, and some (perhaps primarily older patients, like my mom) just want to hear “Your tests were all normal” or “Your A1C is higher than I’d like. Please make an appointment to come in again within x weeks so we can adjust your medications.”
    The challenge, I suppose, is for the developers of EMRs to design them such that patients who access them can find what they want. However, I can’t imagine that the kind of patient who only wants to hear “Your test was normal” would even bother accessing an EMR, so you probably don’t need to worry about them. I also think that patient access to the full record will only be a problem initially, in most cases. Just as you ignore extraneous data and focus only on what you want to know in the lab reports, patients will also learn to ignore all the noise and focus only on the signal. It may cost patients and doctors some wasted time and worry, but I think this will resolve itself fairly quickly.

  51. Lisa, I had to grin when I read

    But, personally, I do get a kick looking through the CD of MRI scans and finding the abnormalities which are described in the details of the radiology report. If not for anything but my own entertainment.

    I, too, love to look through mine and compare old to new. Frankly, we have some folks on the Cushings-Help message boards who have gotten so good at reading dynamic MRI’s of the pituitary they will find the tumor(s) that the neurosurgeons later find.

    Rob, no doctor can be expected to do it all. You aren’t a radiologist. However, someone needs to be responsible for seeing that someone who knows what s/he is doing does read it. Who is that? Well, it’s “me”, the patient. If I let my PCP and endo rely on my radiologist’s report, I’d be in deep doo-doo. Instead, I took the responsibility of finding someone(s) who knew how to read my MRIs appropriately. Do you have time to do that for me? No. And probably most of your patients don’t need that. However, my PCP would have said I didn’t either if I hadn’t taken the initiative. So, you see, it all comes back to me. I have to be responsible. You don’t know what you don’t know, sometimes. (Said with great respect, seriously.)

  52. Lisa, I had to grin when I read

    But, personally, I do get a kick looking through the CD of MRI scans and finding the abnormalities which are described in the details of the radiology report. If not for anything but my own entertainment.

    I, too, love to look through mine and compare old to new. Frankly, we have some folks on the Cushings-Help message boards who have gotten so good at reading dynamic MRI’s of the pituitary they will find the tumor(s) that the neurosurgeons later find.

    Rob, no doctor can be expected to do it all. You aren’t a radiologist. However, someone needs to be responsible for seeing that someone who knows what s/he is doing does read it. Who is that? Well, it’s “me”, the patient. If I let my PCP and endo rely on my radiologist’s report, I’d be in deep doo-doo. Instead, I took the responsibility of finding someone(s) who knew how to read my MRIs appropriately. Do you have time to do that for me? No. And probably most of your patients don’t need that. However, my PCP would have said I didn’t either if I hadn’t taken the initiative. So, you see, it all comes back to me. I have to be responsible. You don’t know what you don’t know, sometimes. (Said with great respect, seriously.)

  53. Gee, I’d just like to get my results timely and whether they’re normal or not. I often hear “if we don’t call you, call us.” This is unacceptable to me. I would be, as I would assume, most basically healthy patients would be, thrilled just to get a call!
    Great discussion though. I, at this point in my rather healthy life, would only want summaries and ranges much like Dr. Rob has listed but should I get a chronic condition, I would want more detailed information. I believe it should be a discussion between the doctor & patient as to what level of information the patient would like.

    But I have to reiterate, I would just like to get my results without having to call myself. And yes, even if they are normal. I’d be happy with a postcard.

  54. Gee, I’d just like to get my results timely and whether they’re normal or not. I often hear “if we don’t call you, call us.” This is unacceptable to me. I would be, as I would assume, most basically healthy patients would be, thrilled just to get a call!
    Great discussion though. I, at this point in my rather healthy life, would only want summaries and ranges much like Dr. Rob has listed but should I get a chronic condition, I would want more detailed information. I believe it should be a discussion between the doctor & patient as to what level of information the patient would like.

    But I have to reiterate, I would just like to get my results without having to call myself. And yes, even if they are normal. I’d be happy with a postcard.

  55. Hornets’ nest indeed. At least it is a hot topic still (which is why I went ahead and published the post, Enrico). I had written a more frustrated post in the past, but thought better of it, as it was more a reaction than reality.
    I actually fall between the two extremes in this case. At the present time we send letters on all tests done (nearly all, at least), and if our patients don’t hear from us, they are told to let us know. It is very hard to keep track of all the tests ordered (even with a good EMR system), so if labs got sent to another doctor or never came to us, it is almost impossible to notice. “No news is good news” is a lie – I have said that often.

    I hope to have a flowsheet of relatively common lab tests that patients can access when they want. I will still probably filter out the meaningless numbers like MCHC and absolute monocyte counts (sorry, Enrico) and only put in the tests I think are most salient as a default. I always will willingly send people full copies, though. For my chronically ill patients, I expect it.

  56. Hornets’ nest indeed. At least it is a hot topic still (which is why I went ahead and published the post, Enrico). I had written a more frustrated post in the past, but thought better of it, as it was more a reaction than reality.
    I actually fall between the two extremes in this case. At the present time we send letters on all tests done (nearly all, at least), and if our patients don’t hear from us, they are told to let us know. It is very hard to keep track of all the tests ordered (even with a good EMR system), so if labs got sent to another doctor or never came to us, it is almost impossible to notice. “No news is good news” is a lie – I have said that often.

    I hope to have a flowsheet of relatively common lab tests that patients can access when they want. I will still probably filter out the meaningless numbers like MCHC and absolute monocyte counts (sorry, Enrico) and only put in the tests I think are most salient as a default. I always will willingly send people full copies, though. For my chronically ill patients, I expect it.

  57. By the way, do you guys like the picture below this box? I made it myself. Press “play” and it draws itself. I am going to be taking an advanced finger-painting class later this year.

  58. By the way, do you guys like the picture below this box? I made it myself. Press “play” and it draws itself. I am going to be taking an advanced finger-painting class later this year.

  59. I want full lab reports and I don’t call and bug drs. about the results. We have a kiddo with JRA tending toward CREST and she has a million specialists. If I have copies from endo, neuro, rheum, OT/PT, nephrology, pulmonology etc, we can saw time and effort and lots of useless testing. Honestly, I think I have the brain power to overlook useless info as well as drs do. But I don’t want to hear “elevated SED and ANA and a little anemic, and C3 C4 dropped a bit.” I want numbers. I have copies of visit notes from rheums just because she sees them in multiple settings. Plus, she will have all the info when she is older and can decide then for herself what to do with everything. Can I interpret all labs? Nope, not even close. But I know her normal. And who cares more about watching out for the details than the patient? Things get overlooked along the way and the right hand usually has no idea there is a left hand!! Our drs. are always nice about sending whatever I ask for and it has never been an issue. Until we started dealing with chronic disease the only real numbers I ever wanted were cholesterol. It’s all about perspective.

  60. I want full lab reports and I don’t call and bug drs. about the results. We have a kiddo with JRA tending toward CREST and she has a million specialists. If I have copies from endo, neuro, rheum, OT/PT, nephrology, pulmonology etc, we can saw time and effort and lots of useless testing. Honestly, I think I have the brain power to overlook useless info as well as drs do. But I don’t want to hear “elevated SED and ANA and a little anemic, and C3 C4 dropped a bit.” I want numbers. I have copies of visit notes from rheums just because she sees them in multiple settings. Plus, she will have all the info when she is older and can decide then for herself what to do with everything. Can I interpret all labs? Nope, not even close. But I know her normal. And who cares more about watching out for the details than the patient? Things get overlooked along the way and the right hand usually has no idea there is a left hand!! Our drs. are always nice about sending whatever I ask for and it has never been an issue. Until we started dealing with chronic disease the only real numbers I ever wanted were cholesterol. It’s all about perspective.

  61. Possibly my most favorite conversation about lab results took place between me and my PA re: a urine test a few years ago:
    PA: Your urine is pristine.

    MG: Wow, cool, so does that mean I could drink it in an emergency?

  62. Possibly my most favorite conversation about lab results took place between me and my PA re: a urine test a few years ago:
    PA: Your urine is pristine.

    MG: Wow, cool, so does that mean I could drink it in an emergency?

  63. I get, and will continue to get, copies of every single test I have done. I don’t have one Dr. who seems to have a problem with that. I don’t call them over things on those reports that don’t look right, but I may mention something at the next office visit.
    I don’t understand why you get worked up over this. I remember a post you did maybe a year ago, where you were upset about Drs. not communicating with each other. You didn’t like it when you had patients seen by specialists and you did not receive any paperwork from said specialists. I replied to you then that I always get copies from all doctors and take those copies to my doctor appointments, and you thought that was a great idea. Is this just something you recently decided you didn’t like? Because if it’s OK for me to get copies from surgeons and specialists, to take to my family doctor, then it also has to be OK (A great idea) to get them from the family doctor too.

  64. I get, and will continue to get, copies of every single test I have done. I don’t have one Dr. who seems to have a problem with that. I don’t call them over things on those reports that don’t look right, but I may mention something at the next office visit.
    I don’t understand why you get worked up over this. I remember a post you did maybe a year ago, where you were upset about Drs. not communicating with each other. You didn’t like it when you had patients seen by specialists and you did not receive any paperwork from said specialists. I replied to you then that I always get copies from all doctors and take those copies to my doctor appointments, and you thought that was a great idea. Is this just something you recently decided you didn’t like? Because if it’s OK for me to get copies from surgeons and specialists, to take to my family doctor, then it also has to be OK (A great idea) to get them from the family doctor too.

  65. Holy cow, that is a *nice* Echocardiogram report! Steve want!
    (Born with a Heart Defect, I’ve learned enough I can interpret most of the report!)

  66. Holy cow, that is a *nice* Echocardiogram report! Steve want!
    (Born with a Heart Defect, I’ve learned enough I can interpret most of the report!)

  67. I get nervous about how much extra work this will generate, but I wouldn’t say I get worked-up. I am baffled when my readers overwhelmingly voted to get every bit of their records. I do medicine every day and believe 90% of the record is useless information. The more information the better? I beg to differ.
    I do understand that people with chronic disease are very different. I think that group is represented in my commenters far more than it is in the general population.

    Besides, I wanted to get a lively conversation going. Mission accomplished.

  68. I get nervous about how much extra work this will generate, but I wouldn’t say I get worked-up. I am baffled when my readers overwhelmingly voted to get every bit of their records. I do medicine every day and believe 90% of the record is useless information. The more information the better? I beg to differ.
    I do understand that people with chronic disease are very different. I think that group is represented in my commenters far more than it is in the general population.

    Besides, I wanted to get a lively conversation going. Mission accomplished.

  69. I like to have reports. When I read in the NYT today that some group found more dementia many years later in people who had slightly raised cholesterol in their early 40s, and the cited what ‘slightly raised’ meant (200-245) I could go home and drag that folder out and see that mine was 156.
    Since several of my blood realtives have this problem I don’t think I’m in the clear, but at least I could answer my own question.

    My spouse and I had a very distressing mix-up with a CT scan where it was compared against a very out of date one and nearly caused us cardiac arrest in an Oncologist’s office. So we keep our own copies and give them a quick look. Mistakes and mis-haps happen so if something is life threatening a person needs to be educated about the tests used in treating the problem.

  70. I like to have reports. When I read in the NYT today that some group found more dementia many years later in people who had slightly raised cholesterol in their early 40s, and the cited what ‘slightly raised’ meant (200-245) I could go home and drag that folder out and see that mine was 156.
    Since several of my blood realtives have this problem I don’t think I’m in the clear, but at least I could answer my own question.

    My spouse and I had a very distressing mix-up with a CT scan where it was compared against a very out of date one and nearly caused us cardiac arrest in an Oncologist’s office. So we keep our own copies and give them a quick look. Mistakes and mis-haps happen so if something is life threatening a person needs to be educated about the tests used in treating the problem.

  71. I think you hit the nail on the head. Typical patients aren’t likely to be reading medical blogs. (Although maybe yours adore you so much that they seek you out online too. You seem awfully likeable, even when I’m disagreeing with you. 🙂 So you’re getting an inordinate number of people who want their entire medical record because if we didn’t have a strong interest in the details of our health or medicine in general, we probably aren’t reading blogs about it.

  72. I think you hit the nail on the head. Typical patients aren’t likely to be reading medical blogs. (Although maybe yours adore you so much that they seek you out online too. You seem awfully likeable, even when I’m disagreeing with you. 🙂 So you’re getting an inordinate number of people who want their entire medical record because if we didn’t have a strong interest in the details of our health or medicine in general, we probably aren’t reading blogs about it.

  73. I also get the full report on labs and scans for my kids and husband who all have/had Cushing’s. I get the report from the lab and usually have results before our doctor has even seen them.I take imuran for Crohn’s and have blood tests every two months. I just realized I have never ask for my own lab results. I trust my GI enough to know that if my numbers start getting off, he will let me know.

  74. I also get the full report on labs and scans for my kids and husband who all have/had Cushing’s. I get the report from the lab and usually have results before our doctor has even seen them.I take imuran for Crohn’s and have blood tests every two months. I just realized I have never ask for my own lab results. I trust my GI enough to know that if my numbers start getting off, he will let me know.

  75. The dog/flower picture in the box below is pretty cool.
    Regarding test results, it sounds like the situation influences how people want their results presented. A simple postcard saying, “all test results were normal,” is fine for my husband. I, otoh, want the full report (which I routinely obtain from the lab without creating extra work for the doctor who ordered the tests).

    When my PCP said that the endocrinologist’s report indicated that he had tested me for thyroid antibodies, but he (my PCP) was assuming the test was negative since he hadn’t heard anything, I was able to say, “No, actually, those tests were positive.” I opened my notebook and pulled out my copy of the lab results. First time I’ve ever seen my doctor look shocked. The results were not normal, but he hadn’t been notified.

    MPV? Yes, I’d love to have that number. Like Lisa & Robin, I track my labwork on a spreadsheet. Given the trend in my platelet count over the past two years, I’d be really curious to see what the MPV has done. Neuts/lymphs/monos/eos/basos – no I don’t want those (I know you’re shocked that there’s a test I don’t want results from). Some of those numbers fluxuate way too much for me to have any sense of their being significant.

    MRI? Yes, I want the entire report. With any luck I’ll be able to compare it to the bill and tell if they’re charging for what was ordered, or for what they did.

    Another reason for patients having full access to records? There might be errors that need to be addressed. I have known for over a year that there are errors in some of my records, but figured I’m never going back to those doctors so it doesn’t matter. I just learned that isn’t true. It does matter. If you are in an MVA, the auto insurance company can require you to sign a release so that they have access to all of your medical records. One error might affect which injuries the insurance company will cover. Only if you know what’s in your records can you know if there are glaring inaccuracies.

  76. The dog/flower picture in the box below is pretty cool.
    Regarding test results, it sounds like the situation influences how people want their results presented. A simple postcard saying, “all test results were normal,” is fine for my husband. I, otoh, want the full report (which I routinely obtain from the lab without creating extra work for the doctor who ordered the tests).

    When my PCP said that the endocrinologist’s report indicated that he had tested me for thyroid antibodies, but he (my PCP) was assuming the test was negative since he hadn’t heard anything, I was able to say, “No, actually, those tests were positive.” I opened my notebook and pulled out my copy of the lab results. First time I’ve ever seen my doctor look shocked. The results were not normal, but he hadn’t been notified.

    MPV? Yes, I’d love to have that number. Like Lisa & Robin, I track my labwork on a spreadsheet. Given the trend in my platelet count over the past two years, I’d be really curious to see what the MPV has done. Neuts/lymphs/monos/eos/basos – no I don’t want those (I know you’re shocked that there’s a test I don’t want results from). Some of those numbers fluxuate way too much for me to have any sense of their being significant.

    MRI? Yes, I want the entire report. With any luck I’ll be able to compare it to the bill and tell if they’re charging for what was ordered, or for what they did.

    Another reason for patients having full access to records? There might be errors that need to be addressed. I have known for over a year that there are errors in some of my records, but figured I’m never going back to those doctors so it doesn’t matter. I just learned that isn’t true. It does matter. If you are in an MVA, the auto insurance company can require you to sign a release so that they have access to all of your medical records. One error might affect which injuries the insurance company will cover. Only if you know what’s in your records can you know if there are glaring inaccuracies.

  77. I’ve greatly enjoyed scanning the discussion, and remark as much on its overall civility as on the incisiveness (if there’s such a word) of the comments.
    What is the purpose of the results of tests of any sort? In truth there are probably many valid purposes, but a fundamental one is to let the testee know what they might do next. In the case of health care, that could be what they need to do next to stay as healthy as they are, or to try to get healthier if they want.

    Dr. Rob suggests that most tests seldom answer that sort of question conclusively. That’s fine, or should be; I don’t want to assume my doctor or his/her testing apparatus is omniscient. So suggest to me in the results summary if there’s anything I might do, decisively, then give me the option of diving into the technical aspects of my test, or handing them off to someone willing/qualified to do that for me.

    I imagine that 90% of the time the message will be something to the effect of “keep doing mostly what you’ve been doing, but consider a little more/less of _________. For example, [practical example fitting their circumstances of what more/less means: more walking – X # steps/day, maybe, or less forkfuls of pie/day – anything that puts the ‘goal’ in accomplishable terms]. I may even be overstating what’s practical at that level.

    First do no harm, but first do tell me what I need to do, or assure me that I need do nothing in particular right away. And do that first – at the top of my test results.

  78. I’ve greatly enjoyed scanning the discussion, and remark as much on its overall civility as on the incisiveness (if there’s such a word) of the comments.
    What is the purpose of the results of tests of any sort? In truth there are probably many valid purposes, but a fundamental one is to let the testee know what they might do next. In the case of health care, that could be what they need to do next to stay as healthy as they are, or to try to get healthier if they want.

    Dr. Rob suggests that most tests seldom answer that sort of question conclusively. That’s fine, or should be; I don’t want to assume my doctor or his/her testing apparatus is omniscient. So suggest to me in the results summary if there’s anything I might do, decisively, then give me the option of diving into the technical aspects of my test, or handing them off to someone willing/qualified to do that for me.

    I imagine that 90% of the time the message will be something to the effect of “keep doing mostly what you’ve been doing, but consider a little more/less of _________. For example, [practical example fitting their circumstances of what more/less means: more walking – X # steps/day, maybe, or less forkfuls of pie/day – anything that puts the ‘goal’ in accomplishable terms]. I may even be overstating what’s practical at that level.

    First do no harm, but first do tell me what I need to do, or assure me that I need do nothing in particular right away. And do that first – at the top of my test results.

  79. Michael Cornett

    I’m among those who like both…to see the full report AND get a rundown from my doc (who’s usually very reliable about that, and half the time it’s an excuse for a nice chat which I enjoy).
    I just wish my insurance forms were less complicated…just give me the rundown so I know if I owe something or not!

  80. Michael Cornett

    I’m among those who like both…to see the full report AND get a rundown from my doc (who’s usually very reliable about that, and half the time it’s an excuse for a nice chat which I enjoy).
    I just wish my insurance forms were less complicated…just give me the rundown so I know if I owe something or not!

  81. Excellent points. Personally, I try to only order tests that will give me useful information – i.e. something that will change what is done in the care of the patient. That is why I don’t check cholesterol on younger aged people – you almost never would put them on medication and you are always telling them to eat right and exercise. The “good to know” reason for tests is fraught with trouble. Here’s my beef: when I order tests, I usually get a ton of extra things. When I order a comprehensive metabolic profile, I get 12 different lab results back; I am ordering the test because of 3-5 different test results I am interested in checking (usually kidney and liver function, sodium and potassium). That means that 5-9 of the results are not really necessary but are done automatically. These are the results that can often mislead and cause anxiety for patients and extra work for doctors. The same is true for a CBC, which I usually do to check for anemia. All I need is the Hemoglobin (don’t care about hematocrit), and perhaps the MCV (if the person is anemic). The platelet and WBC count are OK, but are not the focus at all of the test. Then there are about 15-20 other things in the test that come along for the ride – most of which are of limited to no use. I have NEVER in my 20+ years of medical practice (counting med school and residency) done ANYTHING based on the RBC count, MCHC, or RDW. They are along for the ride and can often show “abnormal” on the test. Why is it done this way? Because it is. It is residual from the old way of practicing. So I am trained to ignore more than 50% of the numbers (unless they are really crazy), yet have to explain to people why the low uric acid level, high RBC count, or High Globulin level is meaningless. The patient is saying to themself “If it is meaningless, why did it get done?” More work. More confusion. Wasted time. Frustrated doctor. Anxious patient. All because of “that’s the way it is done.”
    Stupid.

  82. Excellent points. Personally, I try to only order tests that will give me useful information – i.e. something that will change what is done in the care of the patient. That is why I don’t check cholesterol on younger aged people – you almost never would put them on medication and you are always telling them to eat right and exercise. The “good to know” reason for tests is fraught with trouble. Here’s my beef: when I order tests, I usually get a ton of extra things. When I order a comprehensive metabolic profile, I get 12 different lab results back; I am ordering the test because of 3-5 different test results I am interested in checking (usually kidney and liver function, sodium and potassium). That means that 5-9 of the results are not really necessary but are done automatically. These are the results that can often mislead and cause anxiety for patients and extra work for doctors. The same is true for a CBC, which I usually do to check for anemia. All I need is the Hemoglobin (don’t care about hematocrit), and perhaps the MCV (if the person is anemic). The platelet and WBC count are OK, but are not the focus at all of the test. Then there are about 15-20 other things in the test that come along for the ride – most of which are of limited to no use. I have NEVER in my 20+ years of medical practice (counting med school and residency) done ANYTHING based on the RBC count, MCHC, or RDW. They are along for the ride and can often show “abnormal” on the test. Why is it done this way? Because it is. It is residual from the old way of practicing. So I am trained to ignore more than 50% of the numbers (unless they are really crazy), yet have to explain to people why the low uric acid level, high RBC count, or High Globulin level is meaningless. The patient is saying to themself “If it is meaningless, why did it get done?” More work. More confusion. Wasted time. Frustrated doctor. Anxious patient. All because of “that’s the way it is done.”
    Stupid.

  83. Doc, I agree with everything you said. It’s OK to the massess that all the questions the extra stuff generates goes uncompensated. They pay their insurance and for that they expect unlimited access.
    When families in the hospital ask me what the lab looked like, I tell them it looked fine or we are checking into some abnormal blood counts. I don’t tell them their MCV is low or the mean MCHC is 2% below normal.

    I can understand why you sanitize lab data. On the other hand, if you decide to give full versions to your patients, you should also started charging patients for questions above and beyond your initial free interpretation. It seems like a fair balance to me. If you tell them their lab looks fine and they want further explanation on what to do about a GFR of 50 in their 86 year old grand mother, you should let them know that their credit card number on file you will be bill by the minute. Every time they call in to ask a question requires a secretary a medical records person and your time. And it should be compensated.

    By defining your interpretation of the data as being “fine”, a patient’s request for more information should come at a price.

    Your job, and the reason the patient, or rather their insurance company, is paying you is to sort out the good from the bad. If the patient wants all the information, give it to them. If they want to ask you questions on top of your initial interpretation, you should have every expectation of charging them and the patient should have every expectation of receiving a charge.

  84. Doc, I agree with everything you said. It’s OK to the massess that all the questions the extra stuff generates goes uncompensated. They pay their insurance and for that they expect unlimited access.
    When families in the hospital ask me what the lab looked like, I tell them it looked fine or we are checking into some abnormal blood counts. I don’t tell them their MCV is low or the mean MCHC is 2% below normal.

    I can understand why you sanitize lab data. On the other hand, if you decide to give full versions to your patients, you should also started charging patients for questions above and beyond your initial free interpretation. It seems like a fair balance to me. If you tell them their lab looks fine and they want further explanation on what to do about a GFR of 50 in their 86 year old grand mother, you should let them know that their credit card number on file you will be bill by the minute. Every time they call in to ask a question requires a secretary a medical records person and your time. And it should be compensated.

    By defining your interpretation of the data as being “fine”, a patient’s request for more information should come at a price.

    Your job, and the reason the patient, or rather their insurance company, is paying you is to sort out the good from the bad. If the patient wants all the information, give it to them. If they want to ask you questions on top of your initial interpretation, you should have every expectation of charging them and the patient should have every expectation of receiving a charge.

  85. It’s OK to the massess that all the questions the extra stuff generates goes uncompensated. They pay their insurance and for that they expect unlimited access. Actually, Happy, that’s not always the case. I have said before that when I read my EOB’s, I don’t feel that my doctor is paid enough. I believe that phone calls requiring the doctor/nurse’s time should be billable. My doctor has allowed me to make appointments specifically so that he can answer my questions. While I would prefer to eliminate the driving time and just ask my questions over the phone, I want good answers, and if driving in for an appointment is what it takes for my doctor to get paid, then I’m happy to do that. Not everyone is trying to short change their doctors.

  86. It’s OK to the massess that all the questions the extra stuff generates goes uncompensated. They pay their insurance and for that they expect unlimited access. Actually, Happy, that’s not always the case. I have said before that when I read my EOB’s, I don’t feel that my doctor is paid enough. I believe that phone calls requiring the doctor/nurse’s time should be billable. My doctor has allowed me to make appointments specifically so that he can answer my questions. While I would prefer to eliminate the driving time and just ask my questions over the phone, I want good answers, and if driving in for an appointment is what it takes for my doctor to get paid, then I’m happy to do that. Not everyone is trying to short change their doctors.

  87. Happy, two things come to mind when I read your comment.
    1) I get my lab data straight from the lab. I don’t rely on my doctors to send it to me. Everyone has this right, although in some states a doctor must give permission for the patient to get it. Actually, even in those states, there are ways around it most of the time. I get it faster than my doctors most of the time. I paid for it, and it’s my data. I pay my doctors for their thoughts about it.

    2) I gladly pay for any services my doctors offer, and pay for email and phone appointments with my endocrinologist. (Although those are now billable, I believe, but not readily paid. Rob and I discussed this a few times in the past.) My endocrinologist actually has a paypal account that I can use to pay up front. He is never at risk of losing money, and it’s the best deal around as far as I’m concerned. Yes, I have good insurance, and yes, I turn these in for reimbursement. I get between 70 and 80% reimbursed, so I’m happy.

    Now, I have a question: How do you define what is ” above and beyond your initial free interpretation” and secondly, where do you get off calling it “free”? I pay for my insurance and I pay my co-pay. I pay my fees. I pay for the time I have with my doctors. There is nothing free about anything I get from my doctors. (Rob, what do you think?)

  88. Happy, two things come to mind when I read your comment.
    1) I get my lab data straight from the lab. I don’t rely on my doctors to send it to me. Everyone has this right, although in some states a doctor must give permission for the patient to get it. Actually, even in those states, there are ways around it most of the time. I get it faster than my doctors most of the time. I paid for it, and it’s my data. I pay my doctors for their thoughts about it.

    2) I gladly pay for any services my doctors offer, and pay for email and phone appointments with my endocrinologist. (Although those are now billable, I believe, but not readily paid. Rob and I discussed this a few times in the past.) My endocrinologist actually has a paypal account that I can use to pay up front. He is never at risk of losing money, and it’s the best deal around as far as I’m concerned. Yes, I have good insurance, and yes, I turn these in for reimbursement. I get between 70 and 80% reimbursed, so I’m happy.

    Now, I have a question: How do you define what is ” above and beyond your initial free interpretation” and secondly, where do you get off calling it “free”? I pay for my insurance and I pay my co-pay. I pay my fees. I pay for the time I have with my doctors. There is nothing free about anything I get from my doctors. (Rob, what do you think?)

  89. When we e-mail patients their lab results, we have two options: to send the actual report, or send an abbreviated form of it.

    Wouldn’t the best thing be to put the abbreviated summary report including the doctor’s interpretation (along with perhaps a statement that “all other results are normal or expected and no cause for concern” if that is the case) with the full results following?

    That way, the patient can see everything, but will not be overly concerned or confused as s/he may be if s/he just had the full results without any doctor’s interpretation included.

  90. When we e-mail patients their lab results, we have two options: to send the actual report, or send an abbreviated form of it.

    Wouldn’t the best thing be to put the abbreviated summary report including the doctor’s interpretation (along with perhaps a statement that “all other results are normal or expected and no cause for concern” if that is the case) with the full results following?

    That way, the patient can see everything, but will not be overly concerned or confused as s/he may be if s/he just had the full results without any doctor’s interpretation included.

  91. Should Doctors Sanitize Lab Data For Patients? | Medical News

    […] concerns about computer generated abnormal lab values that have no clinical significance. And he is getting ripped up by patients who say that full lab reports should be sent to patients. Dr Rob, I”m going to […]

  92. I agree. That’s what the long-range plan is. I actually would rather send my interpretation and then just make the whole panel available. I do wish, however, that there wouldn’t be so many dumb things included on normal test panels.

  93. I agree. That’s what the long-range plan is. I actually would rather send my interpretation and then just make the whole panel available. I do wish, however, that there wouldn’t be so many dumb things included on normal test panels.

  94. I used to have a PCP who mailed a copy of all the details, with a special 4×6 postit type form stuck to it. The postit had rows for the big stuff, columns for ok/high/low, and a nurse or MA filled in the numbers. The doc initialled it and jotted quick notes on the full detail sheet- stuff that explained not-really-abnormals. Very brief stuff like “noted, caused by this med/virus, not concerning for your age, recheck 3 months etc.
    You’re going to have problems with people who overreact, but I really liked the postit system. It let me know stuff wasn’t missed.

    I want the full report- I’m an RN, I can handle it. :). But I wouldn’t expect you to keep straight which of your patients want it and which don’t.

  95. I used to have a PCP who mailed a copy of all the details, with a special 4×6 postit type form stuck to it. The postit had rows for the big stuff, columns for ok/high/low, and a nurse or MA filled in the numbers. The doc initialled it and jotted quick notes on the full detail sheet- stuff that explained not-really-abnormals. Very brief stuff like “noted, caused by this med/virus, not concerning for your age, recheck 3 months etc.
    You’re going to have problems with people who overreact, but I really liked the postit system. It let me know stuff wasn’t missed.

    I want the full report- I’m an RN, I can handle it. :). But I wouldn’t expect you to keep straight which of your patients want it and which don’t.

  96. Don’t ignore RDW! There are suggestions that an elevated RDW is more sensitive for Fe deficiency than lowered MCV, and helps in distinguishing Fe-deficient anaemia from anaemia of chronic disease.
    The test that I almost always completely ignore is Cl; I write out my serum chemistry as Na-K-U-Cr.

  97. Don’t ignore RDW! There are suggestions that an elevated RDW is more sensitive for Fe deficiency than lowered MCV, and helps in distinguishing Fe-deficient anaemia from anaemia of chronic disease.
    The test that I almost always completely ignore is Cl; I write out my serum chemistry as Na-K-U-Cr.

  98. Yes, you can give me the bottom line, and that will suffice as far as I’m concerned. But I still want the unexpergated version for my personal records, and to bring along to a new doctor who I think would want to do his own interpretation of the results. I don’t know what the big deal is all about. You must have a lot of hysterical patients. Personally, I go directly to the lab to get a copy, so I don’t have to bother the doctor’s staff.

  99. Yes, you can give me the bottom line, and that will suffice as far as I’m concerned. But I still want the unexpergated version for my personal records, and to bring along to a new doctor who I think would want to do his own interpretation of the results. I don’t know what the big deal is all about. You must have a lot of hysterical patients. Personally, I go directly to the lab to get a copy, so I don’t have to bother the doctor’s staff.

  100. David Lubin, MD

    Hornets’ nest is right! Maybe the key is NOT to mail or email the results but to get the patient into the office to go over the results in person so that you can say, that “this is insignificant, or that doesn’t mean much.” They are more likely to understand if you tell them in person. I had to tell a patient, just today, that I had no idea what the radiologist meant when he said, “there was a hook on the acromion.” I could have guessed, but to try to explain it, nuh, uh.

  101. David Lubin, MD

    Hornets’ nest is right! Maybe the key is NOT to mail or email the results but to get the patient into the office to go over the results in person so that you can say, that “this is insignificant, or that doesn’t mean much.” They are more likely to understand if you tell them in person. I had to tell a patient, just today, that I had no idea what the radiologist meant when he said, “there was a hook on the acromion.” I could have guessed, but to try to explain it, nuh, uh.

  102. Margaret Polaneczky, MD

    Interesting post,and even more interesting discussion in the comments section.
    One thing to point out is that if 20 tests are done (and a metabolic profile or standard internist panel will get you that and more…), at least one will usually be out of range statistically, and meaningless clinically. I find that if I mail complete results to my patients, I end up getting phone calls from them later, worried that I had missed something. I tend to scribble little things like “okay” next to these abnormalities to assuage their fears, but it does not always work.

    I think most of my patients would appreciate the bottom line report with an interpretation rather than a copy of the raw reports.

    I am very curious how you generate your bottom line reports. They look like a lot of work to generate, making me wonder if a phone call would be faster. Do you have a document template you’d be willing to share?

    Thanks again for a very thoughtful post.

  103. Margaret Polaneczky, MD

    Interesting post,and even more interesting discussion in the comments section.
    One thing to point out is that if 20 tests are done (and a metabolic profile or standard internist panel will get you that and more…), at least one will usually be out of range statistically, and meaningless clinically. I find that if I mail complete results to my patients, I end up getting phone calls from them later, worried that I had missed something. I tend to scribble little things like “okay” next to these abnormalities to assuage their fears, but it does not always work.

    I think most of my patients would appreciate the bottom line report with an interpretation rather than a copy of the raw reports.

    I am very curious how you generate your bottom line reports. They look like a lot of work to generate, making me wonder if a phone call would be faster. Do you have a document template you’d be willing to share?

    Thanks again for a very thoughtful post.

  104. Agreed, Margaret. We are used to the background abnormals. We have anew PA and I am still telling her “Just ignore that one. It’s really not important.” If I have to say that to a PA, then I’ll be saying far more to patients.
    The report is generated very quickly through a “quick text” or macro on our EMR. I type the word “NormalLipids” and the lipid result shows up with an interpretation. I type “NormalBMP” and “NormalCBC” for the others. When a lab or ward calls me with lab results on the phone, I don’t want to hear “it’s normal” but I also don’t want them to read off all of the numbers. A concise written report is best (IMO).

  105. Agreed, Margaret. We are used to the background abnormals. We have anew PA and I am still telling her “Just ignore that one. It’s really not important.” If I have to say that to a PA, then I’ll be saying far more to patients.
    The report is generated very quickly through a “quick text” or macro on our EMR. I type the word “NormalLipids” and the lipid result shows up with an interpretation. I type “NormalBMP” and “NormalCBC” for the others. When a lab or ward calls me with lab results on the phone, I don’t want to hear “it’s normal” but I also don’t want them to read off all of the numbers. A concise written report is best (IMO).

  106. While I agree with your overall points on labs and the level of detail we provide to patients, I personally would have trouble characterizing a GFR estimated to be 50 as “normal kidney function”. If that is a stable creatinine, the GFR estimate suggests the creatinine is NOT normal for the patient’s age, even if the creatinine line lists it as being in the “normal range.” It may not change anything I do with the patient in the short or medium term, but I just can’t call that Cr normal and feel like I am being completely honest with the patient.

  107. While I agree with your overall points on labs and the level of detail we provide to patients, I personally would have trouble characterizing a GFR estimated to be 50 as “normal kidney function”. If that is a stable creatinine, the GFR estimate suggests the creatinine is NOT normal for the patient’s age, even if the creatinine line lists it as being in the “normal range.” It may not change anything I do with the patient in the short or medium term, but I just can’t call that Cr normal and feel like I am being completely honest with the patient.

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