Inkwell: Authors and Artists

    
<leroyleroy>, I think that's a key point, maybe THE key point. 

A physician reading everything new that's published wouldn't have time
to treat patients, but a patient with literal skin in the game has an
incentive to be thorough and exhaustive.

Getting back to the book - Dave, you constantly refer to the support
you were getting from people who were reading your journal. Were those
mostly people who knew you? Or were you getting notes of support from
people you've never met?
  

    
Yes, <leroyleroy>'s right - the scope issue is decisive. The figure
I've seen is that the average primary doc has 1500-2000 patients.
Combine that with the information explosion - I recently heard 6,000
new articles a day, with 1/3 indexed for easy access and the rest "off
the grid" - and it's quickly clear that it's folly to expect every doc
to be up on the latest about every condition.

Early in this decade the number of new indexed articles per day was
about 800.  Consider that a good professional doc is supposed to read
two articles a day.  The director of the National Library of Medicine
put it this way: "If I read 2 articles a day, after a year I'd be 400
years behind!"
  

    
How much of what doctors can access is also available to patients? 
  

    
(Ugh, I just discovered after hours away that this wasn't posted.
Sorry for holding things up!)

====

Jon, re people giving support - a few new people arose, but the
amazing thing to me was how my support went viral through increasingly
obscure levels of my social networks. (The site I used,
CaringBridge.org, sends out notification emails when I post something
new; people would forward those emails.) First I heard from former
co-workers, then older friends, then even college friends. Eventually I
heard from people I hadn't seen since *high school*.

It was really something to get out of bed some days and find 10, 15,
20 notes from people.  

To the extent that social connectedness boosts the immune system, this
is pretty nifty for something that's free. 

In May I stopped in at CaringBridge HQ while I was in the area, and
recorded <a href="http://www.youtube.com/watch?v=2uhNeNVUARw";>an
impromptu four minute video</a> of what a difference it made.
  

    
> how much of what docs can access is available to patients?

I can't say with any authority. A lot of things are, but a lot of it
is behind a paywall at subscription journals. I've never had occasion
to go looking, though.

But there's an ironic twist to this: it's not unusual for a motivated
patient to come up with something their *clinicians* can't find with
their usual searches. That's because of a fatal (imo) limitation of the
traditional quality filter (peer reviewed journals): only some genuine
knowledge gets published.

Some successful studies never make it into publication, and some
*unsuccessful* studies throw off useful findings even though they
study's purpose wasn't achieved.

Plus, patients sometimes discover treatments that are useful. I'm
personally close to one example. There's a nasty side effect of some
cancer treatments called Hand-Foot Syndrome, which causes intense
burning sensation on the skin of the hands and feet, so bad that you
can't walk. Patients discovered that a henna paste makes it bearable.
(Turns your skin orange, but I'd take the deal!)  

My friend Monique Doyle Spencer, a stage IV breast cancer patient,
posted this on a simple blog, http://XelodaSideEffects.blogspot.com,
and I circulated it to my patient community. The last I heard, not a
single Medline-indexed journal has reported on this.

The reality we all need to grasp - patients and clinicians and
insurance and policy people - is that <b>the ability to create value in
healthcare depends on information</b>, and <b>there's so much
information today that no single source contains it all</b>, and
<b>it'll be really good if we all agree to work together</b> to find
useful info in every way we can - orthodox and not.
  

    
On the subject of physicians and patients, can you talk about your
relationship with Danny Sands as an example of what's possible? 
  

    
Danny's always been a leading voice in revamping how healthcare is
done. He believes in using technology to process information more
effectively, he co-created the PatientSite medical record system that's
been in use at the hospital since 2000, and in 1997 he published the
first guidelines for doctor-patient email.  He just GETS IT about doing
healthcare better.

Check the photo <a
href="http://epatientdave.com/2009/12/09/making-healthcare-better-through-participat
ory-medicine/";>here</a>
- him and me in an examining room: his computer's always turned so the
patient can see what's going on. 

Another example is that as soon as my diagnosis was confirmed he
hooked me up with the expert patient community at ACOR.

It's late at night so I'm going to cop out and say, just imagine that
your doctor is totally and genuinely modern, great to talk to, not a
trace of arrogance, really knowledgeable, and completely interested in
sharing the knowledge and helping you help yourself. Seriously.
  

    
Can you say more about PatientSite and how it works for patients? 
  

    
PatientSite is a so-called patient portal - a viewport, for use by
patients, into various data in the hospital's systems.  

PatientSite lets certain patients see these kinds of information:
- lab results (blood tests, urinalysis, etc)
- radiology reports
- prescriptions (including requesting refills online)
- visit history
etc.

There are two BIG limitations to this vintage-2000 system:

1. It does NOT currently let patients see their physicians' visit
notes. This means I can't tell what other doctors are seeing, and I
can't tell if there are mistakes that I could easily correct.

Robert Wood Johnson Foundation has a project underway, in PatientSite
and at two other health systems, called OpenNotes, to study what
happens when patients do see doctors' notes. The purpose is to address
concerns expressed by many doctors that their lives would go out of
control if we-all could see the visit notes and supposedly deluge them
with questions or fears about complex medical jargon, lab results, etc.
 

2. *Most doctors don't participate in PatientSite.* This is (imo) a
nasty artifact of a key structural issue in US medicine: most doctors
at a hospital are independent businesses, not employees, so they don't
have to do anything they don't want. And most don't want to participate
in PatientSite!

I have a vision of a better world.... :)
  

    
Does your vision for a better world have specific use cases attached
at this point? What might some of those be?
  

    

So many improvements to look forward to.

In the Swedish health care system, doctors will print out and give 
patients their notes, hospital notes, surgery notes, results of all tests.  
The data base is central, so anyone along the way can provide as much 
detail as the patient requests.
  

    
Jon, no, there's nothing like that in the book and I'm not holdin'
anything back. :)

<wickett>, yes, there was a lot of talk at Health 2.0 Paris this
spring about the various ways EU countries are far ahead of the US.

In the e-Patient Working Group (where JonL and I hang out), one of our
best colleagues is Susannah Fox of the Pew Internet and American Life
Project.  She studies American behavior and has a sharp analytical
mind, and she writes well. So although I didn't go to that conference
last April, I was glad she was invited.

In her report on our blog
http://e-patients.net/archives/2010/04/health-2-0-europe-a-moveable-feast.html

she said:
__________

"Nobody in that room needed to hear about the basics of patient
networks. Instead, it is time to talk about the power of health
conversations informed by data, the self-experimentation that people
engage in using information often found online, the impact of
real-world experience on drug safety, and of course, participatory
medicine."
__________

It's funny (in a sad way): today I read about a U.S. retail company
that sells tires.  They save your information in a database that any
other store can see, in case you need repairs or replacement. It's
truly ridiculous that the U.S. hasn't achieved this in healthcare. 

So many improvements to look forward to, indeed!
  

    
Do you think healthcare insitutions sometimes use the HIPAA privacy
provisions as an excuse to avoid making data more accessible to
patients and other stakeholders?
  

    
These days I would want younger medical assistants as they seem more
attuned to collaboration, both data and people. Very positive things
are coming, thanks to folks like you.
  

    
Ted, when you say "medical assistants" are you talking about
clinicians, e.g. doctors?  If so, what an interesting expression! That
would be consistent with Doc Tom's view that the vast majority of our
care is self-care.

Indeed, the residents I've met, just entering the profession, are more
inclined to using the internet in every way possible.
  

    
Yup, that's what I meant.  Seems like these days you have to be your
own advocate. I see this with my mother a lot. It takes three of us to
be sure she's getting good care, partly, because at her age, 87, she
isn't always sure what to do. I think there is a big divide today in
younger people just assuming collaboration and teamwork, versus the old
way of being a "specialist".
  

    
You need to be your own advocate and if possible to have a team of
family members. Somebody to sleep in a chair by your hospital bed when
needed.  Somebody to remind the nursing staff of things forgotten.  In
one case with my family members, somebody to plug the oxygen machine
back in, in the ICU when the plug randomly falls out of its wall
socket. That at one of the "great" hospitals.

This question is one thing many of us "childless by choice" baby
boomers never thought of, though having kids for the purpose of
caretakers when one is ill is a slightly crass motivation.

It's best to have some loyal family members on your team, or excellent
friends, along with health professionals. Some of that team can be
your internet forum pals, obviously, but replacing the plug that falls
out of the wall is a pretty vital contribution, too.
 
  

    
<gail>, that's a terrific note. Thanks. (Ted too.)  

=====

Hm... on the one hand, I'm passionate about awakening awareness and
about patient safety and quality issues. On the other hand, that's not
what the book is about. :)  Are we drifting or scope-creeping, or is
this kosher?
  

    
Re JonL's #63 - 

> Do you think healthcare insitutions sometimes use 
> the HIPAA privacy provisions as an excuse to avoid 
> making data more accessible to patients and 
> other stakeholders?

Last night I spent 45 minutes on a lovely reply to this, and
apparently the "somebody else sneaked in" monster ate it. Ugh. This
leaves me Not Well.

Okay so the short version is: yes, lots of hospitals and doctors do
that, sometimes because they're being obstructionist, sometimes because
they're trying to block customers from going to the competition, and
sometimes because they don't know their ass from their elbow regarding
HIPAA.  And in the last group there are two subtypes: people who are
just plain iggerant, and people who really care and mean well but are
misguided.

HIPAA itself says you can move your insurance, and thus your record.
Hence, you're entitled to get your records. BUT therefore, immense
privacy regulations were written - *regulations*, not in the law
itself. And those regulations are what people are confused about. The
regs have IMMENSE penalties for screwing up, so people are extremely
gunshy.

And then there are the hospital workers who are just plain rude. See
http://e-patients.net/archives/2010/01/my-father%e2%80%99s-medical-record-fias
co.html
including the comments.

For the real scoop, here's a one-page flyer about HIPAA with a
Seinfeld clip in which Elaine tries to see her chart
http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/.
It first aired AFTER the law was passed but before the HIPAA regs were
written. Delicious timing.
  

    
From the book, you seem to have had an exceptionally positive hospital
experience. Is that an accurate assessment?
  

    
Wellll, I can't say what's "exceptional" :-), but I generally had a
good experience.

The cancer treatment itself was performed by real pros. I had a strong
sense that I was being monitored like a hawk. For this treatment
that's important.

However the facilities were not great. One week (of the 4 treatment
weeks) I was in a room with an oddly shaped bathroom; it was not
possible to close the door with both my IV pole and my walker. (This
was before my leg broke and was repaired.) 

In all cases the recliner for my wife to sleep in was almost a joke.
Not totally, but this was not a piece of furniture anyone would be
proud to say was suitable for sleeping. 

Usually when I rang the call button someone would come reasonably
soon. Some times it didn't.

My experience was quite different during my three hospitalizations,
for the surgery and for the broken leg. After my surgery the staff
forgot to take out my catheter on the requested day. I later learned
that leaving it in too long is a frequent cause of hospital acquired
infections, which cause 100,000 deaths a year in the US. Also, the
staff hadn't studied me enough to know that my leg was in the process
of breaking - someone came in the day after surgery and said "Okay,
time to stand up." They didn't know I needed a walker. 

The first time my leg broke I was admitted to a different building,
and the care there frankly stunk. I rang the call bell and nobody EVER
came. (Yes I rang repeatedly.) The next day my ortho doc got me
transferred to another building.

The second time the leg broke the care was okay, though since I wasn't
urgent I didn't always get the blue ribbon attention I was accustomed
to in the near-ICU cancer unit. :)

Throughout the whole thing what was conspicuously lacking (GLARINGly)
was care coordination. I later learned that an essential aspect of
America's healthcare problem is that every frickin thing is driven by
insurance billing codes, and it's hard to get people to do something if
there's no billing code for it, and there's no billing code for care
coordination.  

That's right, if my primary or oncologist or ortho or anyone wants to
take responsibility for OVERSIGHT of my care, making sure all the
specialists and wards KNOW about my whole case, they have to do it as
basically volunteer labor, because they can't get paid for it. 

This completely sucks, and is one reason I'd like to see the
industry's finances changed SOMEhow so this isn't true.  I've heard
(but I have no way to verify) that the problem doesn't exist in
so-called integrated systems like Mayo, where all the doctors are
employees, on salary, instead of having their own separate billing
universes.

--Having said that, it's also all relative to the alternatives. I had
two accommodations that are not complicated but made a big difference
and are still not a given elsewhere: 

1) Wifi. Free wifi in most of the buildings. (Today it's throughout
the hospital; this was early 2007.) I was able to stay connected with
my peeps, and that's a very good thing.

2) *Good* food, with a decent menu, on demand, 24/7, including for
guests. Wow. I mean, not GREAT food, but good food, not your typical
hospital mush. 

And I had a third thing that's still a rarity most places:
PatientSite, my patient portal.  I could view various pieces of my
medical record. I was especially interested in my scan results and lab
test values.  

Today, though, I eagerly await the day when every patient can see
his/her care plan for the day: what meds are to be delivered when,
planned doctor visits, etc. Patients can be a second set of eyes.

And when I say patient, I'm using it as a collective noun: everyone on
the customer side of the professional services that are delivered in a
hospital. When I say patients can be a second set of eyes, that
includes my wife and anyone else who's helping keep an eye on my case.

Positive? Yes, for sure. Exceptionally? Dunno. Uniformly superb? Not
by a long shot. :)
  

    
I have had to spend a lot of time in hospitals throughout my life. I
have had asthma since i was 5 so had many ER experiences during asthma
attacks, and then sometimes was admitted when the attack did not
reverse. When I was 14 I spent 6 weeks in a hospital for the removal of
a lymphangioma tumor from my thigh. It was 2 pounds and I had had it
from birth. Later on I spent 3 weeks at an allergy clinic in Dallas.
Anyway, that coordination problem is always present. From nurses trying
to give medication that I know I don't take, bandaging a wound site
incorrectly because they were not taught the protocol, etc. Early on I
learned to be my own best advocate. 

This last stay in the hospital, for the esophagectomy, I was really
worried about not being mentally present after the surgery. One person
I talked to said he had no memory of the first five days after surgery.
So I had a family member sleep in the room for the first night.
Luckily I was completely mentally present from the day after surgery
onward. Actually, I found Duke Medical Center to be pretty good on
care. There was one nurse who I thought probably should be in a
different line of work, but that was it.
  

    
Holy cow.  What stories you have.

Julie, sounds to me like you really should do a "Why I'm an e-patient"
post for us. You may have just written 2/3 of it right there. Let me
know when you're ready.
  

    

Wasn't coordination of patient care, as a billable expense, intentionally 
omitted from the new health care law?
  

    
<wickett>, I don't know - that didn't get my attention.