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When Patients Read What Their Doctors Write

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Re: When Patients Read What Their Doctors Write

#71

Post by jtheory »

Brief article, but well-done -- this is one of the core ideas of our start-up (though we have no direct association with OpenNotes project).

I liked this in particular: Delbanco tells me that he considers OpenNotes to be "like a new medication." Just like any new treatment, it will come with unexpected side effects.

We've been negotiating these side-effects for a few years, now, with more & more success. Many of the obvious objections ("I need to discuss test results with patients before they see them!") have simple technical solutions, so we implement them (blacklist a set of tests that have a built-in delay before the actual result is shown to patients --though they can see that a new result is ready -- and give the clinician a daily list of what patients have gotten delayed-view results).

It is difficult for many doctors to get used to the idea; I have personal experience trying to get access to letters being written between specialists about me & my treatment, and just getting evasive answers even to persistent attempts. But it's so valuable to good care.

Re: When Patients Read What Their Doctors Write

#72

Post by jacquesm »

kamaal wrote: post #65
poof131 wrote: post #62

Earlier quoted context omitted.

I feel your sentiment. I’ve had a love hate relationship with the medical community. It took two plus years for a diagnosis of Celiac’s. Along the way, I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. And while these docs made me want to crack skulls, I also came across a number of great doctor’s with empathy, knowledge, and an understanding that…

>>I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. I hear you. I went through a very similar phase a few years back here in India. It turns out it was just a simple infection being dragged around by my doctor just to keep the consultation fees coming. It took a little internet research and a change of doctor to get the problem resolved. In another…

Is there a review site for doctors? It would seem to me that such blatant profiteering at the expense (both health and moneywise) of patients ought to be exposed.

Re: When Patients Read What Their Doctors Write

#73

Post by eneveu »

SoftwareMaven wrote: post #53
shortstuffsushi wrote: post #41

Earlier quoted context omitted.

> The medical community currently has an abysmal record with treating chronic health problems. Could you elaborate on this a bit more? What sort of 'chronic health problems' are you referring to, and what is it that the medical community is failing to provide (short of cures, presumably)?

Diet is the underlying cause of (or major contributor to)[0] the vast majority of heart disease, type 2 diabetes, many kinds of cancers, kidney and liver disease, auto-immune diseases, and probably Alzheimer's and other neurological conditions. There is research backing up diet-based interventions that positively impacts or cures all of these, but instead, patients are given pills that are barely palliative. That die…

I'm interested in the foods you should avoid (my email is in my profile).

Are you referring to the problems caused by fructose / sugar? I've been watching Dr. Lustig's lectures and he seems to have good arguments, and your post seemed to echo some of his explanations.

Re: When Patients Read What Their Doctors Write

#74

Post by smanuel »

SoftwareMaven wrote: post #4

I would imagine a lot of the concern over this is more of the existential fear resulting from the balance of power between patient and doctor than anything else. The Internet started that, with patients able to become much more knowledgable about their own conditions (with the unfortunate side effect of every symptom being cancer). Once patients become knowledgable, the doctor moves from a pillar of all knowledge to…

> There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.

I couldn't agree more. I've blogged about this some time ago (shameless plug)

"We need to start taking care of our health data": https://medium.com/@iamhealee/we-need-to-start-taking-care-o...

But responsibility and control is only one side of the coin. There are numerous problems which are happening behind the curtain and people normally don't care about (EHR software compatibility, sometimes lack of EHR software, different attention to detail when doctors record the health data, etc.)

Re: When Patients Read What Their Doctors Write

#75

Post by arethuza »

idlewords wrote: post #5

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 relat…

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-cit...

Re: When Patients Read What Their Doctors Write

#76

Post by rubinelli »

jacquesm wrote: post #72
kamaal wrote: post #65

Earlier quoted context omitted.

>>I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. I hear you. I went through a very similar phase a few years back here in India. It turns out it was just a simple infection being dragged around by my doctor just to keep the consultation fees coming. It took a little internet research and a change of doctor to get the problem resolved. In another…

Is there a review site for doctors? It would seem to me that such blatant profiteering at the expense (both health and moneywise) of patients ought to be exposed.

There are a few, and as you can expect, they open some huge legal cans of worms: http://www.nytimes.com/2012/03/10/your-money/why-the-web-lac... Posting a picture of a cockroach in the bathroom is one thing, essentially accusing a doctor of malpractice is another entirely. Stepping on local Medical Boards' toes doesn't help either.

Re: When Patients Read What Their Doctors Write

#77

Post by tomp »

eneveu wrote: post #73
SoftwareMaven wrote: post #53

Earlier quoted context omitted.

Diet is the underlying cause of (or major contributor to)[0] the vast majority of heart disease, type 2 diabetes, many kinds of cancers, kidney and liver disease, auto-immune diseases, and probably Alzheimer's and other neurological conditions. There is research backing up diet-based interventions that positively impacts or cures all of these, but instead, patients are given pills that are barely palliative. That die…

I'm interested in the foods you should avoid (my email is in my profile). Are you referring to the problems caused by fructose / sugar? I've been watching Dr. Lustig's lectures and he seems to have good arguments, and your post seemed to echo some of his explanations.

Me too. maybe you could just post them here?

Re: When Patients Read What Their Doctors Write

#78

Post by [deleted] »

drdeadringer wrote: post #13

Not having access to my own medical records is something that continues to annoy me to this day. I've heard a few arguments as to why the security is better than Fort Knox, many of these touched upon in the article ["Doctors want to be Free" and "Oh my, Liability"], but I have yet to buy any of them. I hope this "open note" deal continues to trend, and becomes more so; horray for privacy, but bleh to "so secure, I ca…

[deleted]

Re: When Patients Read What Their Doctors Write

#79

Post by lambda »

ghiculescu wrote: post #37
lambda wrote: post #24

Earlier quoted context omitted.

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 m…

Where do you draw the line about what's "protected"? It seems pretty arbitrary, so easy to abuse.

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?

Re: When Patients Read What Their Doctors Write

#80

Post by whafro »

judk wrote: post #59
lambda wrote: post #24

Earlier quoted context omitted.

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 m…

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"

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.
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