
When Patients Read What Their Doctors Write - mkempe
http://www.npr.org/blogs/health/2014/08/14/340351393/when-patients-read-what-their-doctors-write
======
SoftwareMaven
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 a (hopefully) trusted, knowledgable advisor. That change
frightens many in the medical community[1], but it will yield better outcomes.

My own story is one of overcoming obesity and, at times, nearly crippling
depression using that ability to gain knowledge to learn how to feed my body.
In the process, I've stopped medications and have had to teach my doctor
certain things (like why I'm not gong to either worry about my cholesterol or
take any drugs for it).

The medical community currently has an abysmal record with treating chronic
health problems. 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.

1\. Source: my wife is part of that community and sees it regularly.

~~~
madaxe_again
Doctors absolutely _hate_ knowledgable patients, from what I can tell,
however.

I've just spent two years begging for an ultrasound because I've strongly
suspected I have gall stones - and my GP has consistently rebutted me, and has
written stuff like "hypochondriac" in my notes - he left the room, didn't lock
his computer. Tut tut.

I initially tried playing totally stupid and letting them reach their own
conclusions, but they just kept going "norovirus". When I then started talking
about Murphy's sign, cholecystitis, why this lead me to think gall stones -
they responded with a complete shut-down, get out of my surgery, type affair.

Went abroad. Got an ultrasound. Severe gallstones. Took them back to my GP
here, they refused to even look at them. About to go abroad again to have a
cholecystectomy.

So. Educated patients - if this is to help healthcare, doctors have to be on
board too, and I don't think they ever will be, as an informed patient is
viewed as a threat, as you say.

~~~
Someone1234
Maybe you should file a complaint with the medical standards board, sounds
like you'd have a valid case if this story is true.

Although I'm assuming you're in a country where you'd have a medical standards
board or some kind of complaints procedure, which not all have...

~~~
araes
The problem for most patients is that filing a complaint, making sure it gets
into the system, staying on top of it to make sure it isn't buried, responding
to criticisms and building justification for the claim, and then maybe losing
in the end because you have an unsympathetic judge / board / whatever is too
much of a pain in the ass. This being compounded by boards of reviewers in
many places that are friends with the reviewed, so you get an effect like the
police, with a wall of white, rather than a wall of blue.

Just switch doctors, tell folks you know not to use that doctor, and tell the
doctor why you're leaving. Network effects and market forces can make an
impact on this kind of thing if you're diligent.

~~~
Someone1234
I'm not sure what kind of insane complaints procedure you've had to deal with,
but here you just file it, they sometimes come back for more
information/questions, and then that's the end of it. You sometimes get a
letter with a result, but there's none of that other stuff you listed ("making
sure it gets into the system," "staying on top of it," "making sure it doesn't
get buried," etc).

Plus you don't really "lose." You make a complaint, they investigate, and then
take action if they feel it is justified. There isn't any "prize" for
"winning" so therefore you don't lose.

Ultimately I'm not sure what you're getting at. Sounds like FUD to me,
essentially "don't complain because it might be a hassle and the free market
will magically solve the issue anyway."

------
idlewords
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.

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

~~~
lambda
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?

------
gingerlime
I've met the guys behind a German startup called "Was hab ich?"[0] - which
translates roughly to "what have I got?".

It's a platform that lets people post their doctor's notes and have med
students interpret it for them in an easy to digest form.

It helps both patients better understand their conditions and med students
learn how to read and interpret diagnosis.

It's a non-profit as far as I'm aware, since part of their philosophy is
giving access to patients irrespective of their financial ability. I think
it's a really neat concept. Sadly only available in German / Germany.

[0] [https://washabich.de/](https://washabich.de/)

~~~
eli
Very interesting. What happens if the med students give advice contrary to the
physician?

~~~
gingerlime
I'm not entirely sure, but I don't think they give any advice. The students
only interpret / translate what the physician wrote in their usually-cryptic
notes, and turn it into a simple, understandable form that almost any person
can understand.

If I remember correctly (I don't speak German nor understand medicine), the
note can say something like "test XYZ - negative results". This can sound
scary to someone who doesn't understand what this test is about. The
interpretation could be that negative results on this test means the patient
does _not_ suffer from some kind of disease, and this indicates normal
function...

------
GhotiFish
You know. I checked the source (still checking) but it really seams what they
did was give patients access to their notes, and then _ASK_ them if that
improved things.

How could this honestly be considered evidence that this is a good idea? This
is the standard of evidence that a Homeopath would present.

Who could take this seriously? Patients reported taking their medication more
regularly, here's an obvious question: Did they actually take their medication
more regularly?

Maybe somewhere in the body this is answered. Let me keep looking.

edit: _NO_

    
    
      although self-reports fall short of objective data, open 
      notes may prove to be a simple intervention that has an 
      important effect on medication adherence.
    

Good, glad they lamp-shaded it.

edit2: [http://www.myopennotes.org/](http://www.myopennotes.org/)

oooooohhh. This makes more sense. This is a paid for study.

Why does this have 200 upvotes?

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mutatismutandis
I think this is great; I know for a fact that when I try to describe a series
of symptoms to my doctor he will be typing away, and I think there's a lot of
what I'm saying that gets lost going from the ears to the fingers. I also
think, having both patient and doctor "on the same side" makes it seem more
like a team effort and empowers people to take more of an active role in their
health.

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davycro
I work in a family practice every other week as a requirement for medical
school. I've noticed that EMRs are very disruptive to a doctors bedside
manner. For every visit the doctor types notes into a laptop while the patient
speaks to her. Communication is inhibited and the doctor struggles to maintain
rapport with her patient.

I would love to see the patients EMR displayed on a screen so the patient
could see what the doctor typed as he spoke. This would make the process
collaborative instead of one sided. It would also be a great feedback
mechanism where the patient could double check that his doctor understood what
he just said.

~~~
alsetmusic
A doctor also might theorize about possible causes of the issue while trying
not to implanting ideas of symptoms in the patients head. When I did computer
repair, I was very careful not to put my own words in the clients vocabulary
when I was still trying to gather information, as I wanted to keep from
coloring their memory / experience. Same thing would apply here. Maybe a good
compromise would be for the doc to summarize their notes at the end and ask
for feedback.

------
dfan
My doctor types at a computer whose screen is explicitly set up to point at
both of us. I was surprised and appreciative when he first did so.

~~~
hbosch
I too have seen this at a chain of clinics where I live: the doctor's laptop
is hooked up to a wall-mounted screen, where I can actively watch what is
being typed into my reports. It surprised me too, and makes me feel much
better about the whole experience.

~~~
hollerith
Do you have any implementation details I could take to my doctor?

(My doc currently uses a laptop that only she can see.)

------
drdeadringer
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 can't see it".

~~~
ghkbrew
As the article mentions, HIPAA gives you the legal right to access your own
medical records. If you request it your hospital or health care provider they
have to give you a copy. Admittedly it may not be as timely as the OpenNote
system, but you do have access. (Assuming you live in the US. Does anyone know
about similar laws in Europe?)

~~~
raarts
In The Netherlands a law called WBGO gives you the right to access - and
correct - your own medical records. The law was instated Apr 1995.

------
CWuestefeld
I've had Crohn's disease for about 35 years, and my experience makes me agree
strongly with the article.

I have to go see my GI doctor a couple of times a year[1]. He's the department
head at a teaching hospital, and so my appointments with start with a first-
year resident examining me. After that, the "real" doc comes in, and the
resident presents to the doc his findings and conclusions.

While I guess that some folks might object to an examination by "only" a
resident, I find that this helps me because of the interchange between the
resident and the teaching doc. At the same time the doctor is teaching his
resident, he's also leaking that teaching to me. As a result, I come to
understand my condition better than I would if were just going to a regular GI
practice. And because management of a chronic disease like Crohn's is all
about understanding its effects specific to your own case, getting this kind
of feedback is invaluable.

[1] I moved recently, and need to find a new doctor with whom I can relate to
like this. But it's easier to talk about in the present tense.

------
Silhouette
This doesn't surprise me at all, but I'm happy to see it.

Just look at how many blatant errors are in an average person's credit
history, one of the most sensitive and important files any other party will
ever hold about them, and mostly driven by computer-generated automatic
updates. They are still borderline works of fiction for significant numbers of
people.

Those credit histories are a lot more limited and objective than a person's
current medical condition and past medical history, so I find it difficult to
imagine even the most diligent medical professionals could collectively hold
numerous conversations with a patient and perform numerous tests over the
course of that patient's entire lifetime and _never_ misunderstand something,
fail to record a potentially significant fact mentioned in passing during a
conversation, or simply make a mistake and record the wrong thing.

I learned something about lawyers and accountants very quickly after I started
my first business. They charge a lot of money for their expert knowledge, and
often they do understand subtleties in their fields that I don't, but they
also still make dumb mistakes. I have found my working relationships with
those professionals are dramatically improved, and the end results likewise,
if we work more collaboratively. For simpler things, I get familiar with the
issues (often with the expert's help) and make a first attempt myself that the
expert can then review. For more complicated things that I simply can't do, we
schedule time for the expert to talk me through the big picture and double-
check any key details.

I cannot imagine why doctors do not routinely work the same way. It seems to
offer all the same benefits and moderate all the same risks for all the same
reasons. The only major difference is that in the case of a doctor it could
literally be my life or quality of life at stake rather than just some numbers
on a page or words in a court, which surely makes it all the more sensible to
work collaboratively as much as possible.

------
baldfat
After going through Cancer with my sister in the 1990s and then the last 5
years with my son.

YOU ARE YOUR OWN EXPERT. Everyone else always drops something about you and
you ALWAYS need to remind and talk about all the issues out loud with your
doctor. If they don't find a new doctor if it is a big medical issue.

------
svec
Similar topic: "How Doctors Think" ([http://www.amazon.com/How-Doctors-Think-
Jerome-Groopman/dp/0...](http://www.amazon.com/How-Doctors-Think-Jerome-
Groopman/dp/0547053649/)) is a great book. Amazon blurb:

"How Doctors Think is a window into the mind of the physician and an
insightful examination of the all-important relationship between doctors and
their patients. In this myth-shattering work, Jerome Groopman explores the
forces and thought processes behind the decisions doctors make. He pinpints
why doctors succeed and why they err. Most important, Groopman shows when and
how doctors can -- with our help -- avoid snap judgments, embrace uncertainty,
communicate effectively, and deploy other skills that can profoundly impact
our health."

------
ersii
In some of the counties ("Landsting") in Sweden, the patient may log on
electronically with a electronic ID (certificate based, issued by banks) and
view their journal at any time.

All patients have a right to their journals, as far as I know - although,
there might be restrictions on parts - such as psychiatric treatment I guess -
and everyone can request to get a copy of their journal. A bit of a pain in
the ass to obtain - but surely possible.

I just thought it might be interesting to add to the conversation/article how
things are working in another country/part of the world.

------
krisgee
As a complete outsides I don't see why anyone would be surprised, going to the
doctor is quite often an expression of powerlessness, you have no idea and no
control over what is going on _in your own body_ and you need this powerful
semi-stranger to do some divination on you and tell you what's wrong. Of
course giving someone even a semblance of control over the proceedings helps
them feel more engaged and more knowledgeable about themselves.

~~~
hrktb
I think it can be pretty complex. A lot of people (especially older people)
will have a preconceived idea of what they have, and come to the doctor only
to get confirmation, or have a prescription. Then some will only take the
drugs matching what they think they have, and just ignore everything else the
doctor told them (my parents do that).

Or for people with chronic issues, there isn't much mystery about what's going
on, only some variations between a month and another, most of the time. What's
special is that the patient will be motivated enough to do a lot of research
(in the time there was no internet, go through medical documentation, even
research papers), taking time to understand well enough what's happening to
them. Then, a doctor might diagnose something different than their previous
doctor. Or prescribe different drugs with different side effects. Or sometimes
the doctor might not be as well informed on the subject as their patient is,
because it's not their specialty for instance.

These might be the cases where having transparency and trust between the
doctor and patient are the most important and crucial to have the patient
cooperate.

------
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.

------
chintan
Back in the day, when Google Health tried to show patients their EHR data,
here is what ensued:

[http://www.zdnet.com/blog/healthcare/google-health-faces-
its...](http://www.zdnet.com/blog/healthcare/google-health-faces-its-first-
test/2122)

------
MisterBastahrd
The biggest indicator of health is nutrition, yet it's one of the most poorly
understood topics in medicine. Ask five different doctors and you'll get five
different responses as to what are the accepted parameters in a healthy diet.
What we need is a concerted research effort by governments to make headway in
figuring this thing out instead of relying on research by teams funded by
large agribusiness conglomerates. We also need (at least in the US) to start
regulating what goes into our food. It's unacceptable to call something "lite"
when you've just stripped out healthy fats and added chemical fillers made
from corn sugar.

It's just as unacceptable that someone can graduate from high school without
knowing how to balance a checkbook, open a checking account, or know that you
should probably be reading the nutritional labels on the back of the food
products you purchase... it's a societal failure.

~~~
DanBC
> Ask five different doctors and you'll get five different responses as to
> what are the accepted parameters in a healthy diet.

You really wont. It'll be pretty much advice about eating a varied diet, not
too much fat, salt, or sugar, with a lot of vegetables and a wide range of
fruit and veg.

~~~
Domenic_S
You really will. Eggs, for example, have been controversial forever [0]. And
who could forget the USDA Food Pyramid, encouraging people to eat 6-11
servings of carbs [1]? The 90s heralded the low-fat craze with the mantra
"Sugar doesn't make you fat. Fat makes you fat." [2] We've swung the other way
in recent years with the anti-carb options that started in earnest with Atkins
and branched out to keto/paleo.

Nutrition is tricky and is _heavily_ marketed by extremely powerful
industries.

[0]
[https://www.google.com/search?q=eggs+health+controversy](https://www.google.com/search?q=eggs+health+controversy)

[1]
[http://upload.wikimedia.org/wikipedia/commons/6/6d/USDA_Food...](http://upload.wikimedia.org/wikipedia/commons/6/6d/USDA_Food_Pyramid.gif)

[2]
[http://articles.baltimoresun.com/1998-10-25/features/1998298...](http://articles.baltimoresun.com/1998-10-25/features/1998298194_1_sugar-
makes-you-fat-premature-aging)

------
novalis78
the only problem - in the US - with this is that the more you tell them the
more they will bill you. It's like as if every little piece of information
that otherwise should help a doctor identify what's wrong and result in a
faster and more accurate diagnosis makes the billing department's job that
much easier. Now they don't have to break down one single item and charge you
10 ways, they can break down each of your statements and charge you 10 ways
for each.

~~~
judk
Extraordinary claims require extraordinary evidence. Please share.

~~~
novalis78
From personal experience, I saw how a level 1 sprained wrist ER visit turned
into a level 4 case, using some of my detailed description to establish
criteria that made the case seem bigger than it actually was.

It's called "upcoding", "phantom billing" etc and are common medical billing
fraud practices. [http://www.business2community.com/health-
wellness/the-5-most...](http://www.business2community.com/health-
wellness/the-5-most-common-types-of-medical-billing-fraud-0234197#!bFAgN2)

------
motyar
Doctors writes too bad (poor hand writting) that sometimes patients cant
understand. In India we are talking about a rule ( law ) where doctors have to
write in CAPITAL only.

~~~
kijin
That's going to be a non-issue once doctors start typing instead of writing.
Maybe there should be a rule that requires doctors to type their notes
whenever possible.

I'm not even talking about a real computer, which might be too expensive for
doctors in rural India to purchase and maintain. Even a 60-year-old mechanical
typewriter should be better than most people's handwriting.

~~~
DanBC
> That's going to be a non-issue once doctors start typing instead of writing.

It will be a lot better, but:

35 instead of 3.5?

7.5 uG or 7.5 mG?

------
cherryblasters
I would love this!

