7 ms·

One problem with this approach is patients who are making stuff up entirely. They're not a large part of the population, but since they relentlessly seek medica

One problem with this approach is patients who are making stuff up entirely. They're not a large part of the population, but since they relentlessly seek medical attention (often to the point of self-harm), every doctor is familiar with them. Giving such patients editorial power over doctors' notes gives them a further lever with which to manipulate the system. It's a weird situation in which the doctor/patient relationship is actually adversarial, and it poisons a lot of otherwise good ideas predicated on the assumption that doctors and patients want the same thing.

skybrian 12y ago
This could be fixed by having a section of the notes that only doctors can read. Hopefully it wouldn't be needed most of the time.
drdeadringer 12y ago
> patients who are making stuff up entirely I'm not sure how making notes visible, or invisible, to patients would change the adage that "patients lie". Exacerbation or reduction arguments, perhaps, but the fundamental principle I'm not sure would change. Toward the "further lever to manipulate the system", that may be something to consider in terms of who has editorial access to the records vs. simple readability access to the records... little more.
- pyre 12y ago
  It's not about the patient editing the record directly. It's more about the patient talking to a different doctor than the one that wrote the notes, and then saying, "oh, that's wrong. This is the right information." If the doctor takes that at face-value (like in the article's example), I assume that it ends up on the notes.
  - judk 12y ago
    Ultimately anyone can lie to anyone, and misplaced trust is a separate problem from letting people know. Plenty of records are incorrect, and kill people.
    - pyre 12y ago
      By hiding the records from the patients, it obfuscates the record from the patients. They can't know what's in there to correct (with truth or falsehoods) it without seeing it.
bayesianhorse 12y ago
Editorial power? I must have missed that in my reading of the article. As far as I understood it, patients weren't able to redact/change their notes. Reported symptoms and complaints are listed comprehensively, but the doctor is not compelled to do any unnecessary testing, or even falsify test results. Because of the outrageous amount of data that is dumped into a doctor's head, he is able to recognize "hypochondriac" at a glance on the record, without that term or any other negative comments to that nature being in there.
- idlewords 12y ago
  This is not about hypochondria, but people who knowingly fake illness. They can be extremely manipulative.
  - bayesianhorse 12y ago
    Then the open records don't make the job of the doctor any more difficult or easier. Arguably, it's not really the responsibility of the doctor to figure out, beyond some reasonable point, if he is being "manipulated" by the patient.
- jtheory 12y ago
  This is mitigated quite a bit by tracking the source of information, and adding rather than ever deleting any data. A patient can (and should!) be able to correct the doctor's notes reporting the patient's experience (symptoms, priorities, etc.), and self-reported medical history. The patient would not be able to edit lab results, or the doctor's own notes from a physical examination, or prescriptions, and so on, though they could be able to add comments (again, clearly sourced). Just as all data from doctors, labs, etc. is clearly sourced.
kijin 12y ago
Giving patients a copy of doctors' notes != giving them editorial power over doctors' notes. They're doctors' notes, after all. Both the doctor and the patient can look at the screen, but only the doctor has the keyboard. Of course, the psychological pressure to bend to the patient's wishes might be stronger if the patient can see what is being written down. But that's a kind of problem that rigorously trained professionals can learn to avoid to some extent. As you said, most doctors already know how to tell when a patient is seeking unnecessary drugs and/or procedures. Refusing to make unwarranted modifications to the records shouldn't be too different from refusing to prescribe unnecessary drugs and/or procedures. Liars gonna lie. Their ability and determination to lie is not one bit hampered by their inability to read the doctors' notes. If someone tries to turn doctors' notes into some sort of wiki that both sides can edit, I'd be concerned. But not yet.
- idlewords 12y ago
  I would be interested to hear what physicians on HN have to say about this.
- carbocation 12y ago
  I write all of my notes under the assumption that the patient will read them. I consider my notes to be the patient's property - they (or their insurers) are paying me for them, anyway. It removes needless judgment (positive or negative) which is totally useless in the doctor/patient relationship, and permits me to stay focused on the subjective and objective facts, and my assessment.
tokenadult 12y ago
Our fellow participant idlewords remembers a real-life incident that he wrote about eloquently.[1] I learned about this essay of his from another Hacker News participant, and am grateful for the tip. [1] http://idlewords.com/2012/09/no_evidence_of_disease.htm http://idlewords.com/2012/09/no_evidence_of_disease.htm
lambda 12y ago
So, I think that the best way to address this would be to allow it to be mostly open. The default is for all notes from the doctors and patients visible to everyone; but doctors can write "hidden" notes that only other doctors are able to see. In a lot of ways, I see this like a public bug tracker. For bug trackers, it's generally best for everyone to see all changes, to be kept up on what's going on and be able to most usefully provide extra information. But for security sensitive issues, or internal discussion that involves things that the end user needn't know about, many have a way of posting "protected" comments that only certain privileged users can see.
- ghiculescu 12y ago
  Where do you draw the line about what's "protected"? It seems pretty arbitrary, so easy to abuse.
  - lambda 12y ago
    In general, you have to put a certain amount of trust in your doctor. They are helping you make pretty life altering decisions. Now, there is a bit of a cultural barrier where they aren't used to the idea of patients being as involved in their medical care, but on the whole, they are there to help you. If you're really all that worried about your doctor writing lots of secret notes and not letting you see them, even once there's a system in place to allow you to easily collaborate with them, maybe it's time to get a new doctor?
- judk 12y ago
  How does hidden help? An honest response to a hypochondriac is pretty obvious to any other doctor. 100x "patient complains of y, tests show no evidence"
  - whafro 12y ago
    I know more about pediatrics than about other specialties, but there are several use cases for hidden commentary in pediatrics. One is commentary about how to handle the patient's parent, who may, for example, be well-meaning but verbally abusive to staff, and the practitioner needs to be know to be constantly reassuring to avoid confrontation. Another includes notes that are about the patient, but not legally allowed to be seen/read by the parent (who otherwise has rights to a child's medical record in the US until age 18), such as discussions around sexual activity or birth control.
DanBC 12y ago
You just create narrow exemptions to fit those situations. In England I'm allowed to see my notes unless it's going to harm me. I'm allowed to add annotations, but I'm not allowed to change or remove any information.
arethuza 12y ago
One of the most amusing bits in the excellent blog/book "Blood, Sweat and Tea: Real Life Adventures in an Inner-city Ambulance" there is a bit about people who pretend to be unconscious - apparently one trick for dealing with these people is for a doctor to ask in a loud voice for a "brain needle" as they need to draw off a sample... Apparently a lot of people make a miraculous recovery at that point! http://www.amazon.co.uk/Blood-Sweat-Tea-Adventures-Inner-city-ebook/dp/B002SDGLTG http://www.amazon.co.uk/Blood-Sweat-Tea-Adventures-Inner-cit...
jayd16 12y ago
People are talking about hidden notes but it seems like a better system is to just have all the notes immutable with the ability for patients to comment on line sections (like code review tools). This way you can correct without rewriting history.

skybrian 12y ago

This could be fixed by having a section of the notes that only doctors can read. Hopefully it wouldn't be needed most of the time.

drdeadringer 12y ago

> patients who are making stuff up entirely I'm not sure how making notes visible, or invisible, to patients would change the adage that "patients lie". Exacerbation or reduction arguments, perhaps, but the fundamental principle I'm not sure would change. Toward the "further lever to manipulate the system", that may be something to consider in terms of who has editorial access to the records vs. simple readability access to the records... little more.

pyre 12y ago
It's not about the patient editing the record directly. It's more about the patient talking to a different doctor than the one that wrote the notes, and then saying, "oh, that's wrong. This is the right information." If the doctor takes that at face-value (like in the article's example), I assume that it ends up on the notes.
- judk 12y ago
  Ultimately anyone can lie to anyone, and misplaced trust is a separate problem from letting people know. Plenty of records are incorrect, and kill people.
  - pyre 12y ago
    By hiding the records from the patients, it obfuscates the record from the patients. They can't know what's in there to correct (with truth or falsehoods) it without seeing it.

bayesianhorse 12y ago

Editorial power? I must have missed that in my reading of the article. As far as I understood it, patients weren't able to redact/change their notes. Reported symptoms and complaints are listed comprehensively, but the doctor is not compelled to do any unnecessary testing, or even falsify test results. Because of the outrageous amount of data that is dumped into a doctor's head, he is able to recognize "hypochondriac" at a glance on the record, without that term or any other negative comments to that nature being in there.

idlewords 12y ago
This is not about hypochondria, but people who knowingly fake illness. They can be extremely manipulative.
- bayesianhorse 12y ago
  Then the open records don't make the job of the doctor any more difficult or easier. Arguably, it's not really the responsibility of the doctor to figure out, beyond some reasonable point, if he is being "manipulated" by the patient.
jtheory 12y ago
This is mitigated quite a bit by tracking the source of information, and adding rather than ever deleting any data. A patient can (and should!) be able to correct the doctor's notes reporting the patient's experience (symptoms, priorities, etc.), and self-reported medical history. The patient would not be able to edit lab results, or the doctor's own notes from a physical examination, or prescriptions, and so on, though they could be able to add comments (again, clearly sourced). Just as all data from doctors, labs, etc. is clearly sourced.

kijin 12y ago

Giving patients a copy of doctors' notes != giving them editorial power over doctors' notes. They're doctors' notes, after all. Both the doctor and the patient can look at the screen, but only the doctor has the keyboard. Of course, the psychological pressure to bend to the patient's wishes might be stronger if the patient can see what is being written down. But that's a kind of problem that rigorously trained professionals can learn to avoid to some extent. As you said, most doctors already know how to tell when a patient is seeking unnecessary drugs and/or procedures. Refusing to make unwarranted modifications to the records shouldn't be too different from refusing to prescribe unnecessary drugs and/or procedures. Liars gonna lie. Their ability and determination to lie is not one bit hampered by their inability to read the doctors' notes. If someone tries to turn doctors' notes into some sort of wiki that both sides can edit, I'd be concerned. But not yet.

idlewords 12y ago
I would be interested to hear what physicians on HN have to say about this.
carbocation 12y ago
I write all of my notes under the assumption that the patient will read them. I consider my notes to be the patient's property - they (or their insurers) are paying me for them, anyway. It removes needless judgment (positive or negative) which is totally useless in the doctor/patient relationship, and permits me to stay focused on the subjective and objective facts, and my assessment.

tokenadult 12y ago

Our fellow participant idlewords remembers a real-life incident that he wrote about eloquently.[1] I learned about this essay of his from another Hacker News participant, and am grateful for the tip. [1] http://idlewords.com/2012/09/no_evidence_of_disease.htm http://idlewords.com/2012/09/no_evidence_of_disease.htm

lambda 12y ago

So, I think that the best way to address this would be to allow it to be mostly open. The default is for all notes from the doctors and patients visible to everyone; but doctors can write "hidden" notes that only other doctors are able to see. In a lot of ways, I see this like a public bug tracker. For bug trackers, it's generally best for everyone to see all changes, to be kept up on what's going on and be able to most usefully provide extra information. But for security sensitive issues, or internal discussion that involves things that the end user needn't know about, many have a way of posting "protected" comments that only certain privileged users can see.

ghiculescu 12y ago
Where do you draw the line about what's "protected"? It seems pretty arbitrary, so easy to abuse.
- lambda 12y ago
  In general, you have to put a certain amount of trust in your doctor. They are helping you make pretty life altering decisions. Now, there is a bit of a cultural barrier where they aren't used to the idea of patients being as involved in their medical care, but on the whole, they are there to help you. If you're really all that worried about your doctor writing lots of secret notes and not letting you see them, even once there's a system in place to allow you to easily collaborate with them, maybe it's time to get a new doctor?
judk 12y ago
How does hidden help? An honest response to a hypochondriac is pretty obvious to any other doctor. 100x "patient complains of y, tests show no evidence"
- whafro 12y ago
  I know more about pediatrics than about other specialties, but there are several use cases for hidden commentary in pediatrics. One is commentary about how to handle the patient's parent, who may, for example, be well-meaning but verbally abusive to staff, and the practitioner needs to be know to be constantly reassuring to avoid confrontation. Another includes notes that are about the patient, but not legally allowed to be seen/read by the parent (who otherwise has rights to a child's medical record in the US until age 18), such as discussions around sexual activity or birth control.

DanBC 12y ago

You just create narrow exemptions to fit those situations. In England I'm allowed to see my notes unless it's going to harm me. I'm allowed to add annotations, but I'm not allowed to change or remove any information.

arethuza 12y ago

One of the most amusing bits in the excellent blog/book "Blood, Sweat and Tea: Real Life Adventures in an Inner-city Ambulance" there is a bit about people who pretend to be unconscious - apparently one trick for dealing with these people is for a doctor to ask in a loud voice for a "brain needle" as they need to draw off a sample... Apparently a lot of people make a miraculous recovery at that point! http://www.amazon.co.uk/Blood-Sweat-Tea-Adventures-Inner-city-ebook/dp/B002SDGLTG http://www.amazon.co.uk/Blood-Sweat-Tea-Adventures-Inner-cit...

jayd16 12y ago

People are talking about hidden notes but it seems like a better system is to just have all the notes immutable with the ability for patients to comment on line sections (like code review tools). This way you can correct without rewriting history.