Inkwell: Authors and Artists

    
My wife and I, both with Kaiser, were discussing this last night.   We 
miss our old school GPs from 20 years ago, who were like friends of the 
family, and knew our histories by heart.   At Kaiser, we're processed by 
an overworked doctor who has 20 minutes to make sense of our problems and 
plan a strategy.   On the plus side, they have our entire histories in 
searchable form right in front of them during the appointment, and 
they're great at dealing with us by email.  

I have a history of melanoma, and my wife  spotted a mole that 
looked questionable on my back one morning.  I couldn't manage to get a 
good look at it myself, using a mirror.  At that point, under the old 
system, I would have booked an appointment with my GP, he'd have looked at 
it, and then booked an appointment with a dermatologist. Then, a few days 
later I'd have seen the dermatologist, and finally gotten some clarity on 
what I was dealing with.

Instead, I set the timer on my iPhone camera and spent about 5 minutes 
getting a good shot of it, and the look of it bothered me as well. So I 
emailed it to my doctor at Kaiser, who told me that it didn't look like a 
problem to him, but to be sure, he emailed it directly to dermatology and 
they brought me in for a look.  And he was right.   The bottom line is 
that I spent a lot less time worrying about it than I would have with my 
old GP.   
  

    
Rik, you're the poster boy for the empowered e-patient. Try to
transpose that brief little story to a traditional system - not just
non-electronic, but fee-for-service — and so many obstacles emerge. 
  

    
These stories point out the complexities of new and emerging
technology - trial and error.  Unfortunately in health care we are
dealing with people's lives, feelings and emotions and that makes it
even more difficult.  Kaiser was an early adopter of digital
communication technology for health care and goodness knows they have
had their bumps along the road.  After reading Lena's story we know
they still do.  That is why it is so important for patients/consumers
of health care, who are markedly absent from the planning discussions, 
to  let their health care providers  know  how they feel about the way
their care is addressed and delivered.  It is when patients like Rik
take the initiative, use their ingenuity  and strive for a
collaborative approach, that  the result will be better, safer,  more
cost effective health care for all of us.
  

    
in these kinds of discussions, there is almost never talk about
- concierge medicine
- integrative practitioners

both of which are sought precisely because patients want time, caring-for,
focus, attention.

my perception is that these are growth areas in healthcare --- and my
experience with these practitioners is that the infliction of e-whatever
(as demanded by medicare or what insurance they might take) is just that ---
an affliction.

when i saw my optometrist for my annual, i was annoyed at having to fill out
an electronic form, duplicating basic info i already knew he had and which
didnt allow for the visual peculiarities that are the reason i see him and
not, say, costco's doc-in-a-box.

what he told me at the exam is that insurance is driving him to have to fill
out these forms, which arent hellpful --- and my actualy chart, with my
actual history, is still paper. because -that- contains the useful info he
needs. this guy isnt anti-technology --- i get custom cad-cam enabled
driving glasses (iZon) from him (mapped from a picture of my eyes) and he
uses a digital scanning technique --- no dilation required --- to do the
depth examination of the eyes. and he stores this, so he has archives to
compare.
  

    
Paulina,

I am not exactly sure whether your are indicting all digital
communication technology in health care;  endorsing concierge medicine;
or discussing the obstacles that doctors face because they have to
deal with a bureaucratic system of insurance regulations.  So I will
take these issue one by one.

Concierge medicine is wonderful, personal, patient centered for those
who can afford to pay for it.  The operative words here are those who
can afford it.  That leaves out the great majority of people so it does
not resolve health care issues for most of us.

I totally agree with you that filling out the forms time and again in
the doctor's office makes no sense whatever.  I do not believe this is
something demanded by insurance companies.  It is really a function of
how the doctor organizes information, stores it and processes it for
insurance purposes. Goodness knows that all doctors have to process far
too much information for insurance purposes.   Some  have more
efficient internal systems than others.  That said, the demands on
doctors today to process information and paperwork is outrageous and
clearly takes their time away from more personalized patient care.

As to e-health, this is not something demanded by the insurance
industry.  It represents an evolution in the way information is
processed and follows the path of every other industry that we deal
with that has converted to digital record keeping. The flow of
information in medical practice is so immense that digitizing records
is essential for accurate, continuous care.  This is particularly
important when patients deal with several providers and their
information ,must be available at the point of care.  

Unfortunately we are in the beginning stages of digitization of 
health care records and things do not flow as smoothly as we would like
them to. I am sure that your optometrist has advanced technology that
he uses for diagnosis and treatment.  that is where health care has put
its focus for many years and rightfully so.  Aren't we lucky to have
these wonderful tools that provide us with better care.  However, we
need the digital communication tools as well to insure that all of our
doctors have full information on us that is easily stored, accessed and
can be reviewed when we are receiving care.
  

    
I worked with the late Dr. Tom Ferguson's e-Patients Working Group, a
set of physicians, patients and others who worked with Tom in exploring
and refining his ideas and producing the seminal white paper,
"e-Patients: how they can help us heal healthcare."
(http://e-patients.net/e-Patients_White_Paper.pdf) This is the same
group that founded the Journal of Participatory Medicine and the
Society of Participatory Medicine (SPM). I met Tom when he was
publishing the magazine "Medical Self-Care" in the 80s, and in the 90s
he showed up at some of our early EFF-Austin meetings, the only place
you could go in Austin at the time to talk about the Internet. Tom
could see that the Internet would bring a democratization of knowledge
and support for communities of affinity, and he was clear how this
would have an impact on healthcare, especially regarding his focus on
what patients could do for themselves. (He was, incidentally, editor of
the health sections of the Whole Earth Catalog.)

The data gathered by physicians and hospitals, how and why the gather
it, how they use it, whether it's accessible to the patient or not -
this are all important issues to consider. e-Patient Dave deBronkart, a
cancer survivor and vocal advocate of participatory medicine, had a
great talk on the subject, "Gimme My Damn Data."
(http://www.slideshare.net/ePatientDave/gimme-my-damn-data-epatient-daves-keyno
te-at-medicine-20-2009)
Eventually we would hope that the patient and all his healthcare
providers could be part of an ecosystem wherein they all have access to
the same data, digitized and stored with access protocols that
facilitate secure sharing.

But another, I think more compelling aspect of participatory medicine
and the evolving concept of the e-patient is about technology-mediated
collaboration and access to knowledge. There are many examples of
online patient communities, the members of which are sharing
information about their specific conditions and treatments, as well as
knowledge they've gained through online (and offline) research. An
example: the Association of Cancer Online Resources (ACOR -
http://acor.org), the founder of which - Gilles Frydman - was also a
member of Tom's working group and a cofounder of the SPM. As an online
community proponent and practitioner, I was drawn to that aspect of
Tom's work, and his desire to make effective use of blogs and other
forms of what we've come to call social media. Empowered patients,
further empowering each other.
  

    
Lots to discuss here.

> concierge medicine, integrative medicine

There is nothing in either of these models that is in contradiction of
using modern technologies to communicate, to gather information, to
engage. In fact, all the tech used correctly will enable a far more
intimate, direct, helpful relationship between doctor and patient. The
example you give, Paulina, does not show that tech is bad, it shows
that poorly-implemented tech is bad. And there is a lot of
poorly-implemented tech out there that gets in the way of real
relationships, rather than mediate them (the way, for instance, we are
having a relationship right now, and have for years, which would never
have existed without this medium).
  

    
And by the way, Nancy, "concierge" medicine is not just for "those who
can afford it." The interesting new development is lower-priced
concierge medicine. Its practitioners don't call it that, but it looks
to me like exactly the same thing. They call is "direct pay" medicine.
Some cost as little as $30/month for all your primary care, including
same-day urgent appointments and after-hours phone assistance, all that
stuff. One of the factors that makes this possible is the very
technology that we are talking about here: Inexpensive or free software
that can run an entire medical practice, including letting patients
make their own appointments, and handling all the billing, everything.
  

    
Hey, Jon! You knew DocTom? One of my heroes, a real pioneer of this
stuff, a serious visionary who was out beating the drums for doing
things differently and better, even 25 years ago. 

By the way, I may be a little scarce in this conversation over the
next few days. Tomorrow morning we are getting in the Prius and setting
off for the Tropic of Cancer, about 1500 miles south. So I will be
checking in when I can, but that may be no more than once a day.
  

    
Excellent talk from e-patient Dave you shared, Jon.
  

    
my point is that yes, hypothetically and in some cases actually emedicine
has its place --- but i have been hearing about this for two decades
(thinking about an article i wrote for silicon graphics'inhouse magazine
about telemedicine, etc etc --- back in the mid90s; a review of dertouzas'
book on emedicine in 2001, etc etc).

hell, the 1st md/acupuncturist i saw in the 1980s used his laptop to write
up his notes/our discussions.

my comment was about the tools-makes-rules problem, and how technology so
often gets oversold as the solution when so often, the real prob is
elsewhere.


we -all- know the prob of corrupt and out-of-date and inaccurate database
entries.

(just to bring up one example). data not being readable after a certain
point.

i am all in favor of outcomes-based medicine. but even there, there is the
issue of who designed the study and what questions were asked of what
populations, etc etc.

i tend to get weary about about every new scheme that wants to substitute
data for information, knowledge, wisdom --- and the really good
practitioners i know rely on diagnostic intuition --- which may be a
skillset younger practitioners have never been allowed to develop....

anyway, i dont usually chime in with my well-known technoskepticism, but...
  

    
Any tool set can be used stupidly. Powerful tools can multiply the
stupidity. Healthcare powerfully needs to work through how to use these
tools so that they give us enormous leverage to do better the things
that we need to do. The time to have these discussions is right now,
while things are so fluid in healthcare, and everyone is ramping up
their use of these tools. This is a time of great urgency to have these
discussions, and guide healthcare decision-makers in how to think
about these tools.
  

    

coupla more dyspeptic thots:

- there seems to always be budget for IT, even if not executed well.
- IT practically always seems to be used to cut headcount and decrease
quality  (the example of <lendie> here is apt)
- of course, i believe in the value of patient communities
- as the founder of Sim City said to me years ago 'ideas are cheap.
implementation is everything'.

and to be honest, the idea of one central database of my health info scares
me

and also to be honest, the instances in my life are too manifold where
getting ahold of the original paper document or record was what was needed
(nicholson baker has had good things to say about this).
  

    
Paulina, glad you're in the discussion. Technoskepticism is warranted.
We've discussed at length within the Society of Participatory Medicine
how the tools are just tools, and how technology by itself won't fix
what's broken about healthcare. That said, there's real promise in the
potential for healthcare innovation leading to better communication,
better care, more effective coordination of treatment. You say you're
concerned about having all your healthcare data in one place, but a
healthcare provider's access to your complete record could save your
life. There's been some talk about having clearinghouses that hold the
data and coordinate treatment, in which case you wouldn't have to
provide full access to all healthcare providers, just to the
coordinating entity. That could be another layer of complexity that
could be mediated by technology.

Joe, I figured you knew Tom. We wouldn't be where we are without his
tireless dedication to his belief that patients should be, as he said,
empowered and enabled. One question that comes up a lot, thinking of
Paulina's technoskepticism, is digital divide - not every patient has
access to "enabling" technologies, so how are they empowered?

(I'll cover for you while you're on the road.)
  

    
Access to, and use of technology, is not a condition of patient
empowerment.  I would contend  that technology provides the tools but
the tools that could empower a patient  can just as easily be print
books sitting in a public library where an empowered and engaged
patient can look up a health care issue, as differentiated from
conducting a Google search; it can be a community of friends or
acquaintances who are going through a similar health care experience 
who meet to discuss their concerns e.g. cancer as differentiated from a
virtual social network; it can be a patient seeking counsel from a
local pharmacist to  better understand the medications that have been
prescribed, as opposed to that patient going to the web and looking up
the medication and reading about the side effects, the proper dosage
and the pros and cons of taking that drug.  

Patient empowerment is the personal act of seeking answers to
important health care questions and using that information to actively
participate your own care and collaborate with a health care team.  The
technology facilitates that search by making information easily
available and communities accessible. But it is not a requirement.
  

    
and lets not forget the datasmog prob; practitioners being overwhelmed with
emails; etc etc.

we all know technology is in itself neutral, has benefits and costs, and can
be deployed for good and bad.
  

    
And here's a perfect, and relevant, example

http://www.nytimes.com/2011/12/15/health/as-doctors-use-more-devices-potential
-for-distraction-grows.html?_r=1&hp
  

    
We cannot make the mistake of putting the blame for irresponsible
people and their bad behavior on the availability of tools of
technology that were designed to facilitate communication, not destroy
lives.  There was a wonderful doctor and mother of two children who
lived in my town.  She chose to text while driving and not to wear her
seat belt.  She was in a car accident where not only was she killed,
but she injured a Nanny and a baby.  Do we blame the availability of
the phone on which she was texting as the culprit in this instance? Do
we blame the headset that the surgeon was using irresponsibly in the
OR. We  cannot indict technology because of the poor judgment of
individuals. We can make rules about its use during the hours when a
provider is working. From the NY Times article it is obvious that
hospitals need to pay attention to these issues.

As to the datasmog of too many emails,  there is etiquette  around use
of email that I outline in the book.  All doctors who agree to email
with their patients should communicate these ground rules  They include
letting people know what subjects are appropriate for email, time
frames and expectations regarding responses to email and frequency of
communicating.  The doctors I interviewed for the book,  and the
anecdotal stories they provided  all indicate the efficiency both for
the patient and for them, as opposed to being overwhelmed.

Prior to the invasion of all of the digital technology, plenty of
doctors would interrupt their patients with telephone calls. Rudeness,
unprofessional behavior and total irresponsibility  when using 
technology tools is a serious  matter for  both the HR department of
health care institutions and for an empowered patient who should speak
up and not tolerate a provider who is not giving you the full attention
you deserve.
  

    
A key issue in the participatory realm is getting physicians and other
healthcare professionals to acknowledge and adopt participatory
principles. Many are already there, but many are far from getting
there. How do we make it happen? Do medical schools get it? Do they
teach how to engage and include the patient?
  

    
  The conviction that teaching communication and patient-centered care
should be part of the medical school curriculum is gaining acceptance.
Getting health care providers including physicians, nurses, therapists
who are practicing  to: (1) understand and  (2) then practice
participatory medicine is a huge challenge that hopefully the Society
of Participatory Medicine will tackle.  Someone needs to lead the
charge.
  

    
good healthcare providers have always been 'participatory' i.e.
listening to their patients --- that many arent is a function of
how human nature doesnt change
  

    
I would agree that the good  providers have always  listened to their
patients, however, there was a culture in medicine where the doctor's
conclusion was the only way to go and patients accepted that.

As patients have become more empowered and educated they have found
their voice and are challenging their providers to be more open and
amenable to various options.  However, we have a long way to go before
patients and providers learn how to collaborate, communicate and
participate as a team.
  

    
true

otoh i took a two-day seminar on psychoneuroimmunology back in the mid 90s,
offered by two profs from ucla. and even -then-, the studies showed that
active engaged patients who did their own research and advocated for their
own care and gave constructive feedback/pushback ---- had better outcomes.
so this has always been true...
  

    
This makes me think of several questions.  Just throwing them out.
This is very interesting.

Is that because stronger, sharper people are already more likely to
have a better prognosis than those who are weak, discouraged, unable to
think clearly?  

What does education and literacy -- outside of the computer side of
the equation -- have to do with health outcomes?  

If you are weak, in pain, feeling dim, fuzzy and discouraged, and wish
you could take on more responsibility, how can you best work with a
care-giver, family member or other advocate to be your proxy?
Would a book like this help that person, or is that another book that
is waiting to be written?
  

    
Gail,

Taking your questions one at a time (and this is just my opinion, not
scientific evidence)

1. I do believe and materials I have read indicate that a positive
attitude is a very important element in overcoming illness.  Being a
strong, sharp personality does not always mean that you can think 
clearly when your own health is impacted. However,  if you are able to
remain sharp and think positively you could overcome a health issue
more easily than someone who is depressed and discouraged.  It does
depend upon the illness and many times these conditions are beyond the
control of the individual. 

2. In this era when health information is everywhere and there are
many choices that have to be made, an individual who is literate  and
seeks to educate himself or herself regarding a health issue is better
equipped to make intelligent choices about treatment and better
equipped to work collaboratively with the health care team. This could
result in a better outcome.   Unfortunately there is never any
guarantee and there are  times when options  and outcomes are out of
the hands of the patient or the provider. 

3.I advocate in this  book that every individual who is too unwell to
advocate for him or her self needs to appoint a family member, friend
or social worker (and hospitals have people for this purpose) to be
that advocate, stay on top of what is being done and represent the
patient's best interests and desires. 

4.My mission in e-Patients Live Longer is  to help people understand
how to work within the system to improve communication with health care
providers,  use the tools we use every day - email, the Internet,
smart phones, databases, to empower ones self to take a more active
role in your care before you are too ill.  I have tried to provide all
of the guidance for  becoming  an empowered patient: questions to ask
your physicians; criteria for choosing a provider and a hospital; smart
phone apps that can make a difference in managing health issues;
considerations regarding privacy of your health information and for
choosing a health insurer; best websites to use for information and to
find communities, etc. If you are weak, in pain, feeling poorly and
discouraged you are probably not going to sit down and read any book.
It is my hope that every individual who has to deal with a major health
care issue (and we all face that possibility in our journey through
life)  reads this book before confronted with a major health problem. I
do think that this book has everything needed to help people become
participatory patients able to be more effective in managing their
health care.

There is another book that I am working on: e-Patients Make the Right
Choices which is all about lifestyle choices we make to stay healthy.
It is quite a different topic with a different purpose.