Inkwell: Authors and Artists

    <scribbled by julieswn Sun 12 Sep 10 18:07>
  

    
You do definitely need an advocate, if you can't advocate for
yourself, when you're in the hospital. 

Here's one story: My mother was in the hospital dying from a complex
set of problems, including a staph infection that invaded her lungs
during surgery that was supposed to improve circulation in her leg (but
was an invitation to gangrene, which was another issue). She'd been
intubated and depended on us to speak for her. 

I noticed one day that she was agitated. Eventually I touched her bed
and realized it was freezing cold - she was on a thermal bed set as
cold as it would go. I asked a nurse if that was for a reason, and he
said omygod no, let me fix that right away.

Hospitals are complex and people are just people. There's some
literature (Joseph Tainter) on the relationship of increased complexity
to problem-solving, and the diminishing return on investments in
complexity. I think healthcare is less manageable and less effective as
it grows more complex. Yet it does solve big problems - if that wasn't
the case, we wouldn't be having this conversation.

Dave, the book includes your thoughts about how statistics can be
misleading... "the media isn't the message." Could you elaborate on
that point? How should patients assess statistics supposedly relevant
to their health and treatement?
  

    
First, Jon - your mother's ice-bed story is potent, because it shows
how legitimate it is to keep an eye on things, and shows that a
(technically) simple mistake can happen easily and be hard to detect.

For whatever reason, systems in our hospitals simply are not set up to
prevent serious mistakes like that.  Obviously the temperature display
was not big and prominent.  And from what I learned researching my
testimony on patient safety this year, virtually *all* health IT
systems have similar gaps.  Human vigilance is required.

It's important to understand this as the US starts implementing health
IT.  Many hospital workers have no experience (yet) at how to keep an
eye on things.

I'd like it if you would submit that as a short post for
e-patients.net.  Understanding this is an important part of being
engaged in one's care.
  

    
Continuing with #77 - The mediaN isn't the message... the median in a
set of numbers. 

I don't want to get into a whole tutorial on statistics here but it's
so important in assessing our options that I gave it a whole chapter
*and* an appendix for the overflow material.

I believe people have a right to explore and evaluate different
options, if they want to. You'll end up assessing the probably outcomes
and risks - but that's REALLY tricky if you don't REALLY know what the
studies said ... and *how relevant they are to you.*

See around 23 minutes of this talk
http://epatientdave.com/2010/08/10/when-a-patient-speaks-to-patients-the-conve
rsation-goes-farther./:
studies get published when the median is known, and they thus don't
tell us what happens with the 50% of subjects who are beyond the
median.

It's complicated by the fact that (surprisingly) a lot of doctors
aren't very good at understanding statistical evidence, which makes it
hard for them to give us solid advice. A short example is slides 66-67
in this presentation
http://www.slideboom.com/presentations/168764/What-e-Patients-Want-%28e-Patien
t-Dave-at-ICSI%2FIHI%2C-May-2010%29.
A longer discussion is in this post
http://e-patients.net/archives/2008/11/making-sense-of-health-statistics.html.
  

    
My medical school epidemiology class was the first and only statistics
most of my classmates had, and they were mostly uninterested in
actually learning the whys and wherefores and just wanted to pass the
damn test.  It was quite depressing, because they're absolutely at the
mercy of the sales pitches from the drug reps and the people coming
around to flog their newest data of whatever kind.  
  

    

I'm beginning to think that statistics should begun to be taught in sixth
grade, so essential it has become.
  

    
This statistics discussion gets to the question of data literacy, but
there's also the question of data access. One of your most-discussed
posts at e-patients.net is the one called "Gimme My Damn Data," where
you make the case for a patient's access to her healthcare data, the
potential for innovation around accessible data, and Doc Searls'
concept of "patient as platform." You quote Doc as saying “the closed
and proprietary nature of heath care is itself a disease that needs to
be cured. … I believe the best way to fix health care is for patients
to be the platform for the care they get from doctors and institutional
systems.”

The post is at
http://e-patients.net/archives/2010/05/%E2%80%9Cgimme-my-damn-data%E2%80%9D-th
e-stage-is-being-set-to-enable-patient-driven-disruptive-innovation.html

What's happened since you wrote that post? Are you seeing evidence
that data will be more accessible?
  

    
Hi y'all - jeekers, I went to sleep sorta - in yesterday's blitz I
didn't notice these posts.  Boarding for Montreal - more later!

Speaking of statistics, yesterday's big time chunk was my semi-annual
CT scan follow-up.  My remaining lesions are now small enough that the
radiologist is no longer reporting two dimensions, just one ... it
appears that my composite score is down 75% from March, i.e. just about
nothing left. 

Woot. THAT's a statistic I can get behind.

ttyl - 
  

    
Wow, bravo!
  

    

Good going!
  

    
That's great to hear, Dave!

I also want to point to Susannah Fox's great post on mobile computing
at e-Patients.net, called "The Power of Mobile." It's at
http://e-patients.net/archives/2010/09/the-power-of-mobile.html We
should talk about that post, especially this: "I am ready to declare
the access revolution over, at least in the United States.  It’s time
to change our frame of reference. Instead of talking about a
revolution, our data shows that it is time to start building a new
civilization."

The official end of this conversation is tomorrow, though as always,
we can extend the conversation as long as we want.

Anyone reading this who's not a member of the WELL but wants to get a
word in edgewise, send your comments and questions via email to inkwell
at well.com, and we'll get it posted.
  

    
Re that mobile post (which is excellent, as SFox usually is) - be sure
to see the comments. There's significant discussion of whether the
"done deal" revolution (which I agree with) is actually reaching the
disadvantaged.  

Hey y'all, it's been good to be here.  I'll check back tonight for any
last-hour post-flinging.:)
  

    
Re #82, what's happened since my April 2009 post about my health data
http://e-patients.net/archives/2010/05/%E2%80%9Cgimme-my-damn-data%E2%80%9D-th
e-stage-is-being-set-to-enable-patient-driven-disruptive-innovation.html
... it's described in the epilog to the book, titled "A blogger, 'just
a patient,' bends national policy."

Little did I realize that this post would land smack in the middle of
a discussion in DC about the adoption of electronic medical record
systems (EMRs). By that time the federal stimulus bill had been passed,
with ~$20B of incentives to docs to use EMR and another $20B of
related spending, e.g. training on how to change their business office
to operate electronically.

Most physicians have only automated billing, because that's how they
get paid, especially the insurance billing codes.  So when they thought
about going electronic for patient records, there was this problem of
all the paper records: how to get THEM into the systems?? And the talk
in DC was, "We'll just grab the insurance codes. That'll be good
enough."  

Unrelated to that (!), my hospital had announced an interface to let
you move your medical records into Google Health.  I tried it, because
I like to do mashups.  Well, turns out the hospital actually didn't
have code to move my real medical records - all they did was send my
insurance records, just as was being discussed in DC.

There are many reasons why the result was a data disaster. For one
thing, they didn't send the dates, so everything I'd ever had came
across as being a current condition. This triggered incorrect warnings
about things that weren't current. Plus, insurance billing codes are
much coarser than clinical reality. And then there's the business
reality that sometimes people will put in a bogus code to get the
system to accept something the patient needs, like a glucose test.

Long story short, using insurance records as a proxy for your actual
body's condition and history is just a wicked bad idea.  I didn't know
about the DC politics but being something of a data geek, I wrote this
3500 word post.  

The Boston Globe called and said it was important and they wanted to
publish it. Little did I know they'd put it on page 1 (4/13/09), which
caused major sh!t to hit the fan.  A week later there was a convention
in Boston, and by that time it had become the buzz of the industry. 
There were people from DC and from national media there, and we were
off and running.  

I'm told that the whole idea of using insurance data was instantly
killed. How bizarre is that?

Then I got invited to policy meetings about EMrs, I'm told that my
testimony here
http://e-patients.net/archives/2010/04/testimony-submitted-to-the-meaningful-u
se-workgroup-for-its-april-20-meeting.html
and here
http://e-patients.net/archives/2010/02/testimony-submitted-to-the-adoptioncert
ification-workgroup-for-its-feb-25-meeting.html
was a key factor in the final regulations, which say that in order to
get the federal stimulus $, the doctor has to demonstrate that his/her
patients & families are actively engaged with their recors.

Pretty freaky.  But see, this is kind of the whole point. Going all
the way back to the Whole Earth Catalog, Access To Tools: every bit of
this story was transformed or enabled by the fact that little ol' me
had access to tools that didn't exist a generation ago. 

The world has changed. Patients and citizens have far more access and
power than ever before. And that's cool.
  

    
That's a great note to end this discussion. Dave, many thanks for
committing so much of your time and insightful prose here, and thanks
to all the others who joined the conversation, especially Julie and
Elizabeth, for their frank accounts of interactions with the healthcare
system.

Please check out http://e-patients.net and http://jopm.org for more
information about the evolution of participatory medicine.
  

    
Thanks for all your great work.
  

    

Thank you ever so much for capsizing the boat!  You did every single person
in this country an immeasurable good!
  

    
>there was this problem of
all the paper records: how to get THEM into the systems?? And the talk
in DC was, "We'll just grab the insurance codes. That'll be good
enough."

That is fucking insane.

Billing codes are little tiny boxes into which we try to squeeze you
and are no where near detailed enough to represent your clinical
condition.  No way could I begin to do justice to my patients if they
burnt my paper records tomorrow and left me only the billing codes. 
And I take care of kids, with much shorter and generally less complex
medical histories than adults.  Yikes.
  

    
Hence "the healthcare mess."
  

    
Incredible story!  Bravo for your work for everybody, building our
mutual Access to Tools, Dave.  And thanks for visiting!  

If you're interested, check out the Health <health> discussions, too. 
You may enjoy how long people here have been organizing to learn and
challenge health information.  Some of the older discussions in Health
go back to the 1980s, and the ongoing discussion is quite solid today.