Yesterday\’s post generated a heated discussion on Twitter (and in the comment section here) about what exactly the patient should have access to see. Some readers have had bad enough experiences with physicians that they want to be able to see things themselves to assure what they are being told is accurate. I can\’t say that I blame them.
I took exception to the idea that anything I wrote should be available on the internet for the patient to see. I went over this ad nauseam yesterday, so I won\’t belabor the point. The bottom line for me is this: if I am required to publish everything I write online, the notes will not contain as much information. I will self-edit and limit the usefulness of the chart if I think the published information will compromise confidentiality or the care itself.
But there is another issue to consider. Here are two x-ray reports I have recently received:
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![\"screen-capture-1\"](\"http://distractible.org/wp-content/uploads/2009/06/screen-capture-1.png\" "\\"screen-capture-1\\"")
So here is my question: do my patients really want to read this stuff? Do they really want to have the word \”Pseudospoldylolisthesis\” thrown at them? I\’d have to look it up to know exactly what it means! X-Ray reports are often written in a way that is complex and hard to understand even for me. I would suspect that instead of answering questions this would raise a bunch of them. Patients would be scared that there is something terrible, when in fact it may just look that way on the x-ray reading.
I suspect that my patients would vote for a list of the procedures that were done and my interpretation. If they want to see the actual copy, then they can ask for it.
One of the folks on twitter said that patient fear was bad, but ignorance could kill. While I agree with the thought behind the statement (that\’s why I proposed opening up our records), I have to say that fear can be deadly as well. People can be paralyzed by too much information. We in the medical profession have seen patients do this by fixating on their problems and looking up everything they can on the Internet. The problem is not that they shouldn\’t know these things, it is that they don\’t know how to filter the information. I encourage patients to be involved in their care, but I do think there is such a thing as too much information. There is information that is important to have, but then there is information overload. Knowing where to draw the line is critical.
The top one is fine (granulomas like this are no big deal), the bottom one is arthritis in the spine that is impinging on nerves, but hasn\’t gotten worse. There is also atherosclerosis.
Thoughts?
Rob, I ask for and get ALL my reports and records. It takes time, money, and multiple attempts because I have to get one from one place, another from another place, etc…. I would love to get it all from an online source (or sources). And yes, I want to see it all.
Does it scare me. Not nearly as much as being told everything is “normal” and when I get copies everything is NOT “normal”. Not only were multiple things overlooked, but wrong ranges were put on lab reports, wrong tests were done, and even my doctors didn’t notice these problems until I pointed them out. I’m including my wonderful PCP in this.
(For instance, the first late-night serum cortisol tests I had done 3 years ago were high. Very high. But because the lab put the daytime ranges on there, they were marked “normal” and my PCP assumed they were “normal”. She told me they were normal. I believed her then. Only after I got my records 3 months later did I find out they were not normal. This was when I started getting copies of everything. I don’t blame my PCP. She used lab data. She’s not an expert in Cushing’s. At least she wasn’t then. I suspect she’s close now.)
The patients who want this information can deal with the information. I want the right to access it. I don’t want to be forced to access it. I also want the right to point out and correct these mistakes in the same EHR/EMR/PHR. I don’t want to accuse or point fingers. I just want to participate in my own care.
Big words don’t scare most of us. Shoot, pseudospoldylolisthesis is just a big word. If I can’t find enough info to explain it, I can certainly ask my doctor(s). What scares us is being sick and not being able to access and use the information we generated through being sick. I truly don’t think I’m in the minority. As you said to me on twitter yesterday: “You are not a normal patient. You WANT to know everything. Yet patients aren’t docs, and info just drives many into fear.” I would change the “many into fear” into “some into fear”. And fear is not always a bad thing. It leads to action. Nor do all have to look and know. Some will, some won’t. I want to. I suspect most should and many want to.
Rob, I ask for and get ALL my reports and records. It takes time, money, and multiple attempts because I have to get one from one place, another from another place, etc…. I would love to get it all from an online source (or sources). And yes, I want to see it all.
Does it scare me. Not nearly as much as being told everything is “normal” and when I get copies everything is NOT “normal”. Not only were multiple things overlooked, but wrong ranges were put on lab reports, wrong tests were done, and even my doctors didn’t notice these problems until I pointed them out. I’m including my wonderful PCP in this.
(For instance, the first late-night serum cortisol tests I had done 3 years ago were high. Very high. But because the lab put the daytime ranges on there, they were marked “normal” and my PCP assumed they were “normal”. She told me they were normal. I believed her then. Only after I got my records 3 months later did I find out they were not normal. This was when I started getting copies of everything. I don’t blame my PCP. She used lab data. She’s not an expert in Cushing’s. At least she wasn’t then. I suspect she’s close now.)
The patients who want this information can deal with the information. I want the right to access it. I don’t want to be forced to access it. I also want the right to point out and correct these mistakes in the same EHR/EMR/PHR. I don’t want to accuse or point fingers. I just want to participate in my own care.
Big words don’t scare most of us. Shoot, pseudospoldylolisthesis is just a big word. If I can’t find enough info to explain it, I can certainly ask my doctor(s). What scares us is being sick and not being able to access and use the information we generated through being sick. I truly don’t think I’m in the minority. As you said to me on twitter yesterday: “You are not a normal patient. You WANT to know everything. Yet patients aren’t docs, and info just drives many into fear.” I would change the “many into fear” into “some into fear”. And fear is not always a bad thing. It leads to action. Nor do all have to look and know. Some will, some won’t. I want to. I suspect most should and many want to.
I don’t disagree with allowing access to those who want it. I send letters to patients when an x-ray report or lab comes back. Some patients want the original. That’s fine.
I will say that the ones who want everything are, in my experience, not much more than 1%. Most people want to know what I think. It’s different with your PCP than it is with specialists. I do have patients who want me to re-interpret what the specialist interpreted. This is fine with me because it gives peace of mind and shows their trust in me. I draw the line, however, at looking at the actual MRI or CT scan. That’s where trust crosses the line to over-estimation.
I don’t disagree with allowing access to those who want it. I send letters to patients when an x-ray report or lab comes back. Some patients want the original. That’s fine.
I will say that the ones who want everything are, in my experience, not much more than 1%. Most people want to know what I think. It’s different with your PCP than it is with specialists. I do have patients who want me to re-interpret what the specialist interpreted. This is fine with me because it gives peace of mind and shows their trust in me. I draw the line, however, at looking at the actual MRI or CT scan. That’s where trust crosses the line to over-estimation.
It’s always good to have a fresh pair of eyes look stuff over, and it’s never bad to educate one’s self, either. So, I want to see my records. I want to see all of my lab reports, so that when my primary care doc’s office staff tells me my rabies titer is “normal” and refuses to directly address the issue of whether they mean positive or negative (probably because they don’t know, and they refuse to “bother” the doctor who does know!), I can read the report myself, and find out that hey, I do NOT have a protective titer and I need a booster shot NOW. I want to see what the radiologist said about the MRI of my left hip, because the orthopedist’s statement that “there’s nothing there, just some kind of density, I think steroids will help” isn’t particularly comforting to me. I want to see what the orthopedist wrote in my chart because when I asked him what his diagnostic plan for working up my chronic hip pain was he said “don’t worry about that, honey. I’m on it.” I want to see the surgical biopsy report because my breast surgeon called me and said it was benign, and then she called me and said actually pathology had called her back and said they are sending it for more testing because it has suspicious features, and then she called me and said it was benign again but I don’t know who to believe. You know? All of these things stress me out and I’d like to be able to read the record myself. Plus of course there’s the time I found three pages of completely bogus statements regarding the epidural anesthesia and fluids administered to me during my second L&D in my chart – complete with alleged fluid drip rates, BPs, etc – I had no anesthesia, and no monitoring, the baby was born while I was “attended” by a scared med student who was screaming “someone go get Dave” (Dave being the attending). So I want to watch for bullpucky, too.
It’s always good to have a fresh pair of eyes look stuff over, and it’s never bad to educate one’s self, either. So, I want to see my records. I want to see all of my lab reports, so that when my primary care doc’s office staff tells me my rabies titer is “normal” and refuses to directly address the issue of whether they mean positive or negative (probably because they don’t know, and they refuse to “bother” the doctor who does know!), I can read the report myself, and find out that hey, I do NOT have a protective titer and I need a booster shot NOW. I want to see what the radiologist said about the MRI of my left hip, because the orthopedist’s statement that “there’s nothing there, just some kind of density, I think steroids will help” isn’t particularly comforting to me. I want to see what the orthopedist wrote in my chart because when I asked him what his diagnostic plan for working up my chronic hip pain was he said “don’t worry about that, honey. I’m on it.” I want to see the surgical biopsy report because my breast surgeon called me and said it was benign, and then she called me and said actually pathology had called her back and said they are sending it for more testing because it has suspicious features, and then she called me and said it was benign again but I don’t know who to believe. You know? All of these things stress me out and I’d like to be able to read the record myself. Plus of course there’s the time I found three pages of completely bogus statements regarding the epidural anesthesia and fluids administered to me during my second L&D in my chart – complete with alleged fluid drip rates, BPs, etc – I had no anesthesia, and no monitoring, the baby was born while I was “attended” by a scared med student who was screaming “someone go get Dave” (Dave being the attending). So I want to watch for bullpucky, too.
Yes, some of us do want to read this stuff. I’m the kind of patient who wants to know everything, has read my record (including radiology reports) from time to time, but I also will look things up if the terminology is unfamiliar and am not at all prone to anxiety, so I’m not going to empty my retirement accounts and start planning my funeral if I see “granuloma” on a radiology report. I’m just interested, curious, and able to process a lot of medical information without taking up my doctors’ time.
But I don’t want it all available on the Web, either. I’m perfectly happy just asking for it when I want to read my record.
Yes, some of us do want to read this stuff. I’m the kind of patient who wants to know everything, has read my record (including radiology reports) from time to time, but I also will look things up if the terminology is unfamiliar and am not at all prone to anxiety, so I’m not going to empty my retirement accounts and start planning my funeral if I see “granuloma” on a radiology report. I’m just interested, curious, and able to process a lot of medical information without taking up my doctors’ time.
But I don’t want it all available on the Web, either. I’m perfectly happy just asking for it when I want to read my record.
As to your questions,Yes. I want to read the reports. Big words can be broken down: pseudo + spondy + lolis (is that one part or two?) + thesis. Not too difficult; it has to do with the spine. I’d be more inclined to focus on the no change… compared to previous studies. Then again, if it were my spine, I’d probably look up the whole word. There’s not much positive to say about chronic conditions, but at least they’re good for vocabulary building 🙂
FWIW, I don’t expect to get reports like this from my doctor. I ask the x-ray, ultrasound, lab, EMG, etc., people to snail-mail me a copy of the reports that they fax to my doctor. By the time I have my copy, my doctor has his – I usually hear from him within a few days. It would save time, postage, and trees if this info was available online. All I want from the doctor who orders my tests is 1) his interpretation of the results (which I want to see), and 2) a plan on how to treat the problem.
As to your questions,Yes. I want to read the reports. Big words can be broken down: pseudo + spondy + lolis (is that one part or two?) + thesis. Not too difficult; it has to do with the spine. I’d be more inclined to focus on the no change… compared to previous studies. Then again, if it were my spine, I’d probably look up the whole word. There’s not much positive to say about chronic conditions, but at least they’re good for vocabulary building 🙂
FWIW, I don’t expect to get reports like this from my doctor. I ask the x-ray, ultrasound, lab, EMG, etc., people to snail-mail me a copy of the reports that they fax to my doctor. By the time I have my copy, my doctor has his – I usually hear from him within a few days. It would save time, postage, and trees if this info was available online. All I want from the doctor who orders my tests is 1) his interpretation of the results (which I want to see), and 2) a plan on how to treat the problem.
Rob, although you may not realize it, I see you as a rare doctor. You try very hard to be trustworthy. My experience has not led me to many doctors like you. And even my PCP admits to time constraints, lack of time to review lab reports (and usually not if they come back “normal”), etc… She farms patients out to specialists, and no one knows the full picture. I won’t go into detail…
The bottom line is that your patients wishes are rare because you are rare. And I suspect more than 1% would opt for access to records even so if available with ease.
Rob, although you may not realize it, I see you as a rare doctor. You try very hard to be trustworthy. My experience has not led me to many doctors like you. And even my PCP admits to time constraints, lack of time to review lab reports (and usually not if they come back “normal”), etc… She farms patients out to specialists, and no one knows the full picture. I won’t go into detail…
The bottom line is that your patients wishes are rare because you are rare. And I suspect more than 1% would opt for access to records even so if available with ease.
I want to have the right to see it all, so that I can see there aren’t bits that are obviously (to me but maybe not to you because I just moved to a new town) missing, belong to someone else, or as Robin says above, a test that’s been mis-analysed.
I want to have the right to see it all, so that I can see there aren’t bits that are obviously (to me but maybe not to you because I just moved to a new town) missing, belong to someone else, or as Robin says above, a test that’s been mis-analysed.
i agree with the writers above. But then, i would imagine if we are followers of this blog, maybe we are the types to be in the 1% Dr. Rob describes.
i agree with the writers above. But then, i would imagine if we are followers of this blog, maybe we are the types to be in the 1% Dr. Rob describes.
You folks do realize that this actually puts a lot more pressure on your doctors. I do know my patients have the right to see things, but frankly I get depressed at the thought of them scouring over my every move. I am a person who is doing his job as best as I can, and am under a lot of pressure to do it well. The idea of adding to that pressure is not necessarily welcome to most physicians. The thought that more patients want to see EVERYTHING in the record is frightening. Yes, you can look things up, but I hope that looking things up does not give you the same understanding as my medical education does.
The resistance from physicians on this is not just arrogance, it is fear and the desire to not increase an already large burden.
You folks do realize that this actually puts a lot more pressure on your doctors. I do know my patients have the right to see things, but frankly I get depressed at the thought of them scouring over my every move. I am a person who is doing his job as best as I can, and am under a lot of pressure to do it well. The idea of adding to that pressure is not necessarily welcome to most physicians. The thought that more patients want to see EVERYTHING in the record is frightening. Yes, you can look things up, but I hope that looking things up does not give you the same understanding as my medical education does.
The resistance from physicians on this is not just arrogance, it is fear and the desire to not increase an already large burden.
I don’t understand how it puts more pressure on my doctor when I read the reports that others are sending to him.
There’s a popular myth out there that if you eat right, exercise, don’t smoke or drink, and take good care of yourself, you will be healthy. It doesn’t always work that way. A diagnosis that is the result of just plain bad luck is scary. You ask, “What did I do wrong to deserve this?” You deny the diagnosis: maybe there’s a mistake; maybe this is someone else’s results, not mine.
When I can see test results, it helps me get through the denial phase a little quicker. Two different labratories on four separate occasions got the same results. Yep, that’s my name and birthdate on the lab report – one mistake might be possible, but not that many. Seeing it in black&white tells me that this is something I’m going to have to learn to deal with. It wasn’t a mistake. I can move on, start learning about the disease, and figure out what to do next without taking up even more of my doctor’s time.
I don’t understand how it puts more pressure on my doctor when I read the reports that others are sending to him.
There’s a popular myth out there that if you eat right, exercise, don’t smoke or drink, and take good care of yourself, you will be healthy. It doesn’t always work that way. A diagnosis that is the result of just plain bad luck is scary. You ask, “What did I do wrong to deserve this?” You deny the diagnosis: maybe there’s a mistake; maybe this is someone else’s results, not mine.
When I can see test results, it helps me get through the denial phase a little quicker. Two different labratories on four separate occasions got the same results. Yep, that’s my name and birthdate on the lab report – one mistake might be possible, but not that many. Seeing it in black&white tells me that this is something I’m going to have to learn to deal with. It wasn’t a mistake. I can move on, start learning about the disease, and figure out what to do next without taking up even more of my doctor’s time.
Docs live in a world where we are always wondering if our mistakes will come back to haunt us. It’s always there. We all miss things at times and we all get through. Probably a good analogy would be parenting: if there was a camera on you as a parent and it was broadcast on TV – 24/7 and you were analyzed as to how you were parenting; that would be unnerving. Nobody is a perfect parent. We all get through by the grace of God.
As a physician, I put pressure on myself to not miss things. The idea that my patients will be able to see any dumb things I do will put all the more pressure on me to be “perfect.” I don’t want to look bad and I don’t want to lose the trust of the patients.
Again, I don’t think y’all understand the pressure normal doctoring give, much less doctoring on a stage.
I know – “that is exactly why I want to see it – because you are human and do make mistakes.” Yes, that is true. I am not giving this as a reason why you should not want it; I am giving it as a reason why doctors generally hate this idea. It sucks to look like an idiot.
Docs live in a world where we are always wondering if our mistakes will come back to haunt us. It’s always there. We all miss things at times and we all get through. Probably a good analogy would be parenting: if there was a camera on you as a parent and it was broadcast on TV – 24/7 and you were analyzed as to how you were parenting; that would be unnerving. Nobody is a perfect parent. We all get through by the grace of God.
As a physician, I put pressure on myself to not miss things. The idea that my patients will be able to see any dumb things I do will put all the more pressure on me to be “perfect.” I don’t want to look bad and I don’t want to lose the trust of the patients.
Again, I don’t think y’all understand the pressure normal doctoring give, much less doctoring on a stage.
I know – “that is exactly why I want to see it – because you are human and do make mistakes.” Yes, that is true. I am not giving this as a reason why you should not want it; I am giving it as a reason why doctors generally hate this idea. It sucks to look like an idiot.
I’ve read that smart patients get copies of everything in their chart. So I requested copies of my chart notes. Reading through them, I was convinced that my PCP really heard what I was saying. I know that somewhere he has other notes, because one time I watched him fill an entire sheet of paper while we were talking, but the chart notes for that visit were only 1/4 of a page. That’s okay; if I don’t see those notes, hopefully it means that nobody else will see them either. You’ve succeeded in making the point that doctors need good notes for themselves in order to do a good job.
To tell the truth, having read my chart, I don’t see a need for me to have copies from my PCP. If my asking to see my chart causes him to take less helpful notes for himself, I’d rather skip seeing the notes. I want my doctor to have all the information he needs to do a good job.
But I’ve also gotten my chart notes from a different doctor. The things documented (and not documented) confirmed my feeling that he really wasn’t hearing me. He didn’t lose my trust based on what I read in my chart; he lost my trust at my first appointment and never got it back. What I read in my chart just confirmed things. I don’t see him any more. I found a doctor that I do trust, and the former dr has space in his schedule to help somebody else. I don’t think he looks like an idiot; it just wasn’t a good fit.
In both cases, I think that seeing my chart notes was a good thing. It confirmed that my overall perception of how my appointments were going is accurately captured in the written records.
But I can see your side of it, too.
I’ve read that smart patients get copies of everything in their chart. So I requested copies of my chart notes. Reading through them, I was convinced that my PCP really heard what I was saying. I know that somewhere he has other notes, because one time I watched him fill an entire sheet of paper while we were talking, but the chart notes for that visit were only 1/4 of a page. That’s okay; if I don’t see those notes, hopefully it means that nobody else will see them either. You’ve succeeded in making the point that doctors need good notes for themselves in order to do a good job.
To tell the truth, having read my chart, I don’t see a need for me to have copies from my PCP. If my asking to see my chart causes him to take less helpful notes for himself, I’d rather skip seeing the notes. I want my doctor to have all the information he needs to do a good job.
But I’ve also gotten my chart notes from a different doctor. The things documented (and not documented) confirmed my feeling that he really wasn’t hearing me. He didn’t lose my trust based on what I read in my chart; he lost my trust at my first appointment and never got it back. What I read in my chart just confirmed things. I don’t see him any more. I found a doctor that I do trust, and the former dr has space in his schedule to help somebody else. I don’t think he looks like an idiot; it just wasn’t a good fit.
In both cases, I think that seeing my chart notes was a good thing. It confirmed that my overall perception of how my appointments were going is accurately captured in the written records.
But I can see your side of it, too.
Robin pretty much speaks for me too.
We may be in the minority, but it’s a much higher percentage than 1%.
I have sarcoidosis, so I won’t be panicking over a new granuloma. I will, however, be concerned if the brain lesions increase in size or number.
Unfortunately, with a systemic disease, I see numerous specialists. Most use EMR, but don’t have access to one another’s systems. I’m happy to be both gopher and reporter. It keeps all of us on the same page – and yup, I’m the captain of my treatment team. My body is in the end, MY final responsibility.
My docs have no fear of my reading what they write, and each expects me to be able to provide a synopsis of what the other physicians have to say. I’m not a physician, but I am the primary record keeper and information clearinghouse on this particular patient.
This is a difficult transitional time for physicians, primary care docs in particular. We can no longer afford the luxury of paternalism where the physician always knew best. Good doctors have nothing to fear from patients accessing their own medical records, if the patients so choose.
The tradeoff might be tort reform and lower malpractice premiums.
I do so appreciate both your blog and your tweets. We need more physicians with your willingness to present these relationship issues.
Robin pretty much speaks for me too.
We may be in the minority, but it’s a much higher percentage than 1%.
I have sarcoidosis, so I won’t be panicking over a new granuloma. I will, however, be concerned if the brain lesions increase in size or number.
Unfortunately, with a systemic disease, I see numerous specialists. Most use EMR, but don’t have access to one another’s systems. I’m happy to be both gopher and reporter. It keeps all of us on the same page – and yup, I’m the captain of my treatment team. My body is in the end, MY final responsibility.
My docs have no fear of my reading what they write, and each expects me to be able to provide a synopsis of what the other physicians have to say. I’m not a physician, but I am the primary record keeper and information clearinghouse on this particular patient.
This is a difficult transitional time for physicians, primary care docs in particular. We can no longer afford the luxury of paternalism where the physician always knew best. Good doctors have nothing to fear from patients accessing their own medical records, if the patients so choose.
The tradeoff might be tort reform and lower malpractice premiums.
I do so appreciate both your blog and your tweets. We need more physicians with your willingness to present these relationship issues.
Yes I get that. I don’t mean that I want to read every single word of doctor’s hand-writing (being of an age where my early records will be in doctor’s hand-writing, or possibly ancient Sanskrit [I defy most people to tell the difference 😉 ]), but I want to be able to see that a sheet of paper hasn’t gone missing. For example, if I’d just moved from here to Llamaville, I could look through my records and instantly know that the letter I sent advising the PHP that I may have been exposed to asbestos in the course of my employment has gone missing when my records were transferred, but no-one employed by the Llamaville Medical Practice could do that.
Yes I get that. I don’t mean that I want to read every single word of doctor’s hand-writing (being of an age where my early records will be in doctor’s hand-writing, or possibly ancient Sanskrit [I defy most people to tell the difference 😉 ]), but I want to be able to see that a sheet of paper hasn’t gone missing. For example, if I’d just moved from here to Llamaville, I could look through my records and instantly know that the letter I sent advising the PHP that I may have been exposed to asbestos in the course of my employment has gone missing when my records were transferred, but no-one employed by the Llamaville Medical Practice could do that.
One, I hate having news dumped on me when I am sitting in a silly gown and have all of three seconds to figure out what questions I might have. I value my doctor’s appointments and want to be prepared and organized and ready to discuss a plan, not get news. So, I would much rather have my test results BEFORE the doctor appointment — much more efficient. If I don’t think of my questions in those three seconds before the doctor flees the room, would you rather that once news sunk in, I spent my time on the net trying to figure it out for myself?
Second, for anyone who has a complex medical condition, having your own “chart” is essential. Inevitably, doctor A will want something that doctor B did, ask questions at the appointment and if you don’t have the results, its going to get punted to the next appointment. As much as I hate being the messenger between docs, I have even more being the messenger, having a stupid explanation that doesn’t answer the question for Doc B, and then have to go back for an appointment with Doc A so I can get the answer for Doc B. If I have the lab, I can just hand over a copy. Or have a little summary update for the doc. Don’t tell me just have Doc A send the records to Doc B. It never happens without ten phone calls. And even then ….
One, I hate having news dumped on me when I am sitting in a silly gown and have all of three seconds to figure out what questions I might have. I value my doctor’s appointments and want to be prepared and organized and ready to discuss a plan, not get news. So, I would much rather have my test results BEFORE the doctor appointment — much more efficient. If I don’t think of my questions in those three seconds before the doctor flees the room, would you rather that once news sunk in, I spent my time on the net trying to figure it out for myself?
Second, for anyone who has a complex medical condition, having your own “chart” is essential. Inevitably, doctor A will want something that doctor B did, ask questions at the appointment and if you don’t have the results, its going to get punted to the next appointment. As much as I hate being the messenger between docs, I have even more being the messenger, having a stupid explanation that doesn’t answer the question for Doc B, and then have to go back for an appointment with Doc A so I can get the answer for Doc B. If I have the lab, I can just hand over a copy. Or have a little summary update for the doc. Don’t tell me just have Doc A send the records to Doc B. It never happens without ten phone calls. And even then ….
I think in general people who WANT to see all of their records are ones with chronic health conditions that actually should keep their own set of records.
Of course, there will be the ‘Oh my god there’s a noise artifact in my scan, I have cancer!!!
I am quite curious to see my records from my PCP that he generated, mostly because he’s fully implamented EMR, so I just want to see what printout copies look like. I can sorta guess since most hospitals I’ve been to have started to partially using EMR, but haven’t seen records from ‘what’s a paper chart? office.
I think in general people who WANT to see all of their records are ones with chronic health conditions that actually should keep their own set of records.
Of course, there will be the ‘Oh my god there’s a noise artifact in my scan, I have cancer!!!
I am quite curious to see my records from my PCP that he generated, mostly because he’s fully implamented EMR, so I just want to see what printout copies look like. I can sorta guess since most hospitals I’ve been to have started to partially using EMR, but haven’t seen records from ‘what’s a paper chart? office.
That’s fair, but not everyone who develops a chronic condition was born with it, and even if they were, it may not have been diagnosed until years later. So you maybe need access to the PHP records to give you a baseline dataset to work from? Also, as per #8 and #12, there are times when you need audit access simply because you’re the only person with current access to your records who even might know if information has gone missing during a transfer.
That’s fair, but not everyone who develops a chronic condition was born with it, and even if they were, it may not have been diagnosed until years later. So you maybe need access to the PHP records to give you a baseline dataset to work from? Also, as per #8 and #12, there are times when you need audit access simply because you’re the only person with current access to your records who even might know if information has gone missing during a transfer.
Warmsocks: breaking it down into parts doesn’t help if you don’t break it down properly.
(it’s pseudo-spondylo-listhesis)
Warmsocks: breaking it down into parts doesn’t help if you don’t break it down properly.
(it’s pseudo-spondylo-listhesis)
[…] blogs. For example, see recents posts in Life in the Fast Lane, Clinical Cases and Images, and Musings of a Distractible Mind. (For more great ideas, see the list in the […]
[…] blogs. For example, see recents posts in Life in the Fast Lane, Clinical Cases and Images, and Musings of a Distractible Mind. (For more great ideas, see the list in the […]
[…] blogs. For example, see recents posts in Life in the Fast Lane, Clinical Cases and Images, and Musings of a Distractible Mind. (For more great ideas, see the list in the […]
Hmmm, I think would be interested in knowing exactly what was important to me and my well being. Even if the words are so big and hard to figure out, its about understanding a new condition, learning, and educating yourself.
My Dog Sitter Blog | UFC Tickets
Hmmm, I think would be interested in knowing exactly what was important to me and my well being. Even if the words are so big and hard to figure out, its about understanding a new condition, learning, and educating yourself.
My Dog Sitter Blog | UFC Tickets
[…] Since then, I’m glad to report that online resources for physicians have proliferated. Ways of improving efficiency and reducing information overload are now common topics on medical blogs. For example, see recents posts in Life in the Fast Lane, Clinical Cases and Images, and Musings of a Distractible Mind. […]
[…] This post was Twitted by BonnieRN […]
I won’t belabor what’s already been said; I agree with much of it.
I DO want to tell a (brief) story to illustrate why it’s important to make records readily accessible to patients who’re willing to grapple with them…
A friend was undergoing echocardiogram prior to knee surgery (at the anaesthetist’s request). A “density” or “tumor” (language used by cardiologist reporting results) was spotted in a lower lobe of the lung.
My friend was told that it was necessary to rule out lung cancer with an X-ray.
After a 10-day wait for an appointment (despite the fact that my friend lives in Mexico and had to delay returning to his business there), the X-ray was “inconclusive.”
(I suspect it was the wrong “next test,” but…I didn’t research it. Why not a PET scan to look for metabolic and “tissue characterization” data? Who knows. I don’t without doing research).
It was a Friday. My friend was told he’d be given an appointment with an oncologist who would review these “inconclusive” results, but that he’d have to wait until Monday to establish the appointment.
No oncologist had ever seen these results when he called Monday. They were still sitting in the cardiology department in the secretary’s “inbox.”
After a day of waiting to hear back from someone in cardiology, my friend was told that he had to have surgery…but that no appointment was available for 2-3 weeks.
Three days later, he met with a surgeon. When he asked for further testing that might reveal “conclusive” results, he was told: “Most patients just want to ‘get it out’ of them, and fast.”
“But, what’s this ‘it’?” asked my friend.
“We don’t know. But why risk it?” replied the surgeon. (I was with him in the surgeon’s office to hear all of this.)
“I can’t stay here in the U.S. for a month to recover from lung surgery unless it’s really a malignant tumor,” answered my friend. “I need to know if it’s malignant or otherwise harmful before I can agree to surgery. Can you arrange further testing?”
“I’ll try,” said the surgeon, “but they’re very busy in imaging. I can’t guarantee an appointment in less than 10-14 days. I’ll have my secretary get back to you.”
No call came that day. The following day, my friend was told by this surgeon’s secretary that “imaging appointments” were a month out. No specific “imaging” was proposed.
The story goes on…. To get to my point, my friend got tired of the runaround, didn’t trust the surgeon, and called “Imaging” himself. He explained his situation with living (and owning a solar business) in Mexico, and pressed for a quick appointment.
In ONE DAY, he received what he said was a CAT scan (I didn’t verify) that proved the “growth” was “calcium,” or “calcification.” In ONE DAY.
By taking things into his own hands, my friend avoided expensive, potentially risky surgery. He avoided a month-long recuperation on the futon-on-the-floor in a friend’s apartment. He didn’t have to abandon his business for a month, and lose serious income.
Neither of us know why the surgeon insisted on surgery, and would not help arrange testing. We can speculate.
Although the surgeon was a salaried employee at Dartmouth-Hitchcock Medical Center, and supposedly had “no incentive” to push surgery, I imagine she had self-interested reasons, whether they were financial or academic, despite this claim.
How can I think otherwise when her actions were so clearly against the patient’s “wholistic” interests? The surgeon never heard, despite repeated protests, that my friend wasn’t “most patients” who “just wanted to ‘get it out’ quickly.” He didn’t have that luxury. On the day he demanded an “imaging” appointment, my friend had already waited 18 days to find out if he had fast-growing lung cancer…or not.
If this story had been my own, and not my friend’s, I would have insisted on seeing my x-ray and all related records, and hightailed it over to the Dartmouth Medical Library to identify various guidelines for diagnostic workups on “suspicious lumps found in the lung during an echocardiogram.”
Armed with specific information, I could have had more fruitful conversations with the cardiologist, imaging specialist, lung surgeon, etc. I could have asked targeted questions. I may have gotten better results.
At the very least, armed with my X-ray and records, I would have had an answer to “do I have lung cancer” in fewer than 19 days (which is how long my friend waited to be told he had calcification in his lung rather than a malignant tumor.
I won’t belabor what’s already been said; I agree with much of it.
I DO want to tell a (brief) story to illustrate why it’s important to make records readily accessible to patients who’re willing to grapple with them…
A friend was undergoing echocardiogram prior to knee surgery (at the anaesthetist’s request). A “density” or “tumor” (language used by cardiologist reporting results) was spotted in a lower lobe of the lung.
My friend was told that it was necessary to rule out lung cancer with an X-ray.
After a 10-day wait for an appointment (despite the fact that my friend lives in Mexico and had to delay returning to his business there), the X-ray was “inconclusive.”
(I suspect it was the wrong “next test,” but…I didn’t research it. Why not a PET scan to look for metabolic and “tissue characterization” data? Who knows. I don’t without doing research).
It was a Friday. My friend was told he’d be given an appointment with an oncologist who would review these “inconclusive” results, but that he’d have to wait until Monday to establish the appointment.
No oncologist had ever seen these results when he called Monday. They were still sitting in the cardiology department in the secretary’s “inbox.”
After a day of waiting to hear back from someone in cardiology, my friend was told that he had to have surgery…but that no appointment was available for 2-3 weeks.
Three days later, he met with a surgeon. When he asked for further testing that might reveal “conclusive” results, he was told: “Most patients just want to ‘get it out’ of them, and fast.”
“But, what’s this ‘it’?” asked my friend.
“We don’t know. But why risk it?” replied the surgeon. (I was with him in the surgeon’s office to hear all of this.)
“I can’t stay here in the U.S. for a month to recover from lung surgery unless it’s really a malignant tumor,” answered my friend. “I need to know if it’s malignant or otherwise harmful before I can agree to surgery. Can you arrange further testing?”
“I’ll try,” said the surgeon, “but they’re very busy in imaging. I can’t guarantee an appointment in less than 10-14 days. I’ll have my secretary get back to you.”
No call came that day. The following day, my friend was told by this surgeon’s secretary that “imaging appointments” were a month out. No specific “imaging” was proposed.
The story goes on…. To get to my point, my friend got tired of the runaround, didn’t trust the surgeon, and called “Imaging” himself. He explained his situation with living (and owning a solar business) in Mexico, and pressed for a quick appointment.
In ONE DAY, he received what he said was a CAT scan (I didn’t verify) that proved the “growth” was “calcium,” or “calcification.” In ONE DAY.
By taking things into his own hands, my friend avoided expensive, potentially risky surgery. He avoided a month-long recuperation on the futon-on-the-floor in a friend’s apartment. He didn’t have to abandon his business for a month, and lose serious income.
Neither of us know why the surgeon insisted on surgery, and would not help arrange testing. We can speculate.
Although the surgeon was a salaried employee at Dartmouth-Hitchcock Medical Center, and supposedly had “no incentive” to push surgery, I imagine she had self-interested reasons, whether they were financial or academic, despite this claim.
How can I think otherwise when her actions were so clearly against the patient’s “wholistic” interests? The surgeon never heard, despite repeated protests, that my friend wasn’t “most patients” who “just wanted to ‘get it out’ quickly.” He didn’t have that luxury. On the day he demanded an “imaging” appointment, my friend had already waited 18 days to find out if he had fast-growing lung cancer…or not.
If this story had been my own, and not my friend’s, I would have insisted on seeing my x-ray and all related records, and hightailed it over to the Dartmouth Medical Library to identify various guidelines for diagnostic workups on “suspicious lumps found in the lung during an echocardiogram.”
Armed with specific information, I could have had more fruitful conversations with the cardiologist, imaging specialist, lung surgeon, etc. I could have asked targeted questions. I may have gotten better results.
At the very least, armed with my X-ray and records, I would have had an answer to “do I have lung cancer” in fewer than 19 days (which is how long my friend waited to be told he had calcification in his lung rather than a malignant tumor.
That’s kind of an appalling story. It seems like pretty scant evidence to use to make a diagnosis. I certainly agree with what your friend did in this circumstance. Glad to hear everything went OK.
That’s kind of an appalling story. It seems like pretty scant evidence to use to make a diagnosis. I certainly agree with what your friend did in this circumstance. Glad to hear everything went OK.
That is an appalling story, I agree. It reminds me of another appalling story. When I was about 22 or 23 years old, a good friend of mine (classmate since 6th grade!) went to the hospital the night before a scheduled surgery to “fix” some kind of alleged congenital malformation of his sacrum which was causing referred leg pain. His surgeon had ordered one last imaging study prior to the procedure. My friend called me the morning of the scheduled surgery to tell me that that last imaging study had revealed a 10 cm tumor in the proximal femur. My friend had been under the care of an orthopedist specializing in lower back problems for three years by this point, by the way, but that’s not the big issue. So I said to my friend “Oh my God, a 10 cm tumor in your leg, what’s the plan?” and he said “well, you know – it’s Friday morning and Monday’s a holiday so they’re going to try to biopsy it on Tuesday and probably it’s treatable so I shouldn’t worry so much.” I told him to hang up the phone, get the surgeon back in the room, and insist on an immediate biopsy – which he did, and I guess it ended up not mattering that much because he was dead in 18 months anyway (it was a peripheral neuroectodermal tumor), but honestly – what doctor can sleep at night leaving a 10 cm mass in the proximal femur of a 22 year old man undiagnosed for five extra days? I know I couldn’t. I was up half the night last night worrying about a sick cat…
That is an appalling story, I agree. It reminds me of another appalling story. When I was about 22 or 23 years old, a good friend of mine (classmate since 6th grade!) went to the hospital the night before a scheduled surgery to “fix” some kind of alleged congenital malformation of his sacrum which was causing referred leg pain. His surgeon had ordered one last imaging study prior to the procedure. My friend called me the morning of the scheduled surgery to tell me that that last imaging study had revealed a 10 cm tumor in the proximal femur. My friend had been under the care of an orthopedist specializing in lower back problems for three years by this point, by the way, but that’s not the big issue. So I said to my friend “Oh my God, a 10 cm tumor in your leg, what’s the plan?” and he said “well, you know – it’s Friday morning and Monday’s a holiday so they’re going to try to biopsy it on Tuesday and probably it’s treatable so I shouldn’t worry so much.” I told him to hang up the phone, get the surgeon back in the room, and insist on an immediate biopsy – which he did, and I guess it ended up not mattering that much because he was dead in 18 months anyway (it was a peripheral neuroectodermal tumor), but honestly – what doctor can sleep at night leaving a 10 cm mass in the proximal femur of a 22 year old man undiagnosed for five extra days? I know I couldn’t. I was up half the night last night worrying about a sick cat…