Inkwell: Authors and Artists

    
We've really been looking forward to this conversation about
healthcare and participatory medicine. Our guest for the next two weeks
is Nancy B. Finn, a writer and thought leader on the impact of digital
communication onorganizational behavior, healthcare and patient care.
She is the author of _e-Patients Live Longer, The Complete Guide to
Managing Health Care Using Technology_, published by iUniverse. This
book, targeted to baby boomers, senior citizens and individuals who
suffer from chronic conditions illustrates how simple communication
tools including the Internet, email and smartphones, enable patients to
be empowered, engaged and educated. She has also authored _Digital
Communication in Medical Practice_ published by Springer, and targeted
at a physician audience, and two books on business and digital
communication: _The Electronic Office_, published by Prentice Hall and
_Writing Dynamics_ published by the CBI Division of Van Nostrand
Rheinhold.

Ms Finn is the Founder and President of Communication Resources, a
consulting organization that offers advice and training workshops on
the management of patient information and the transition to
patient-centered care, For several years she held senior corporate
marketing/marketing communication positions in high tech, publishing
and financial services. She has also taught presentation skills
workshops, communication and new media courses at universities in the
Greater Boston area including: Boston University, Bentley College,
Suffolk University and Leslie University.

She contributed a chapter: Finn NB. Communication: The Key to Good
Medicine, Nash DB, Skoufalos A, Hartman M, Horwitz H, eds. _Practicing
Medicine in the 21st Century_. Tampa, FL: American College of Physician
Executives; 2006. Ms Finn is on the Board of Overseers of Mount Auburn
Hospital, an active member of the Society of Participatory Medicine,
and writes the Media Watch column for the Journal of Participatory
Medicine. She is on the Health Advisory Board of the Massachusetts
Technology Leadership Council. She holds a Master’s degree in Education
and a Bachelor’s degree in journalism from Boston University. Ms Finn
has been a speaker at many national forums on communication technology
topics, writes a healthcare blog: www.healthcarebasics.blogspot.com.
and is a contributor to the blogs e-patients.net, and Trusted MD. She
is the editor of a monthly e-newsletter, Your Health Care Advisor.

WELL member, healthcare analyst, and futurist Joe Flower will be
leading the conversation with Nancy. Joe has explored the future of
healthcare with an extraordinary variety of organizations across
healthcare - professional associations, the World Health Organization,
the UK National Health Service, the Defense Department, pharmaceutical
companies, device manufacturers, health plans, physician groups, and
numerous hospitals. 

He is a columnist for the American Hospital Association, and the
author of hundreds of articles and the forthcoming book, "Healthcare
Beyond Reform: Doing It Right For Half The Cost." His website is at
http://www.imaginewhatif.com/.

Welcome, Nancy and Joe!
  

    
Hey, Nancy! Let me add my welcome, and thanks to you for being here
with us these two weeks.

Your book is titled with a bold assertion: "e-Patients Live Longer."
Is this true? Is there evidence for it? Or is it something that makes
sense and should be true? Do people who regularly use electronic
communications about their health actually live longer?
  

    
Thank you to Inkwell and to you, Joe for this opportunity to talk
about this important and timely topic for all health care consumers.

Let me clarify that the "e" in e-Patients does not refer to
"electronic" but to an empowered, engaged and educated health care
consumer.  I admit that there is not statistically significant evidence
that e-patients live longer.  However, the major thesis of the book is
that the digital tools of communication, email, the Internet, smart
phones, secure portals, are enabling tools for to help health care
consumers become  empowered, educated and engaged so that they are more
equipped to proactively deal with their health issues and interact
with their health care team for better, safer care.
  

    
But which is the chicken, which the egg? An empowered, engaged,
educated consumer certainly is going to do better, technology or not,
and technology offers a panoply of tools that were not there 20 years
ago. But can the reverse happen? Do the tools help create a more
engaged, empowered, educated consumer?
  

    
You can link to this conversation using this short URL:
http://tinyurl.com/Finn-inkwell

If you're reading this conversation, and you're not a member of the
WELL, you can send questions or comments to inkwell at well.com.
  

    
There is no question, (and this is substantiated by research,
www.pewinternet.org) that most of us are using digital communication
tools daily to communicate with colleagues and friends for business and
social interactions,and many of us to seek health information. 
However,when it comes to the question of an individual taking charge of
his or her own health care i.e. becoming empowered, it is the
individuals' deliberate choice that makes that happen and not the
technology. Once the individual makes that choice, the technology 
facilitates, helping that patient become educated and able to have the
full information needed to partner with the health care team to make
treatment decisions, manage chronic illness and take an active role. 
You are absolutely correct that we do not need technology for a patient
to be empowered, engaged and educated. I do believe,that by virtue of
being available, the technology helps us move us in that direction. 
  

    
Give me an example. How do specific technologies help people become
more "empowered, educated, and engaged" with their health?
  

    

I'm also interested in your answer to that question. I consider myself
pretty empowered and do a lot of research before and after visiting the
doctor. 

For example, I woke up dizzy one morning and rather than go to the ER,
I found that I had BPPV, benign paroxysmal positional vertigo, found the
Epley maneuver online and fixed myself up.  But what if I had been wrong?
I'm interested in hearing details so that I can more intelligently
calibrate between being empowered and trying to be my own doctor when
that's not a good idea.
  

    
Remember I said that people empower themselves so the technology
cannot make that happen.  However, here are many examples where
technology helps people become educated and engaged and by 
contributing  to their understanding of their illness or their
treatment options, can empower them to make better health decisions.  

In Chapter 8, Web Resources I tell the story of a man who was
diagnosed with prostate cancer.  As has been widely publicized, there
are many approaches to treating  prostate cancer including: just
radiation therapy, radiation followed by surgery, surgery alone or
hormone treatments.  There are also several different forms of 
surgery, some more invasive with more residual impact than others. Even
after seeking a second opinion this individual  was confused about
which treatment to choose.  His  doctors could only present the
choices.  They could  not make the decision for him.  By doing
extensive research on the Internet reading studies and opinion pieces 
at several cancer sites and engaging in discussion groups with
individuals who had been through prostate cancer, he felt knowledgeable
enough to make a decision.

In this instance, Internet technology and social networking engaged
him proactively to seek the answers to his dilemma and educate him
about all of his options so that he could choose the one that best fit
his situation.

There are hundreds of similar examples where the combination of
Internet research and  social networks  that include  health discussion
forums  help individuals find vital answers which their own doctors
cannot supply.  The social networks also provide comfort by enabling
individual to become engaged in a community where they can talk with
people who are experiencing similar issues.

In a very different example  your have the proliferation of health
apps on the smart phone which fosters empowerment, and requires people
to engage.  There are approximately 12,000 health apps (at the most
recent tally) that enable and educate all smart phone users who are
interested,  on issues related to diet, fitness, medical emergencies
and medical monitoring. 

Smart phones are of particular use to  empower and engage individuals
with chronic illness, helping them monitor their vitals which they can 
send directly to their doctor, a diabetes educator,or physician
assistant, and track their progress. 

Smart phone technology, perhaps more than any other single technology
has revolutionized the way people engage in their health.  Over 83
percent of all Americans own some kind of cell phone according the Pew
Institute research and 9% of those mobile phone users have health
applications on their phones. These numbers are growing.  Researchers
predict that by 2015 there will be 1.4 billion smart phone users
worldwide and 500 million of them will use health applications.
  

    
My answer to Jim's questions is that although it is wonderful to feel
empowered and I obviously encourage patients to research issues on the
Internet and take charge of your health,  I always advocate that
communicating with your physician is essential to insuring your safety.
I also have had  that same vertigo from time to time and use the
method you found on the Internet with much relief.  However, I caution
from personal experience that those episodes of vertigo could be very
similar to other more serious disorders so it is really dangerous to
self-diagnose and treat.
  

    
Isn't the treatment dispositive, though? I mean, if you have vertigo,
and the Epley Maneuver makes it go away and not come back, then what
you had was BPPV, not something more sinister. (I am not a doctor, of
course, and neither is Nancy).
  

    
Take a look at this video, Nancy, I think you'll like it. I think it's
making your point, and I would love your thoughts on it. It's from the
Worrell design firm. The second half of it shows off a prototype that
is kind of a hybrid of a dedicated laptop hooked directly to an advice
nurse, combined with a home testing and health kit.

<http://youtu.be/a23CH6D8f2o>
  

    
Joe,  

Part of being an empowered patient is knowing when and how to
communicate and work more closely with your providers in a partnership
where issues are discussed and resolved together. An empowered patients
should know that making medical decisions based on solutions you find
on the Internet, which may  sound reasonable, is not a wise thing to do
without checking them with your  medical team.  Vertigo, which is
basically feeling like the room is spinning when you go from a prone to
a sitting position, can be very similar to other conditions where the
predominant symptom is feeling dizzy.  I would contend that as an
empowered patient who has developed a good communication system with
your medical provider, that it is in your  best interest to take the
necessary steps to check-in with your provider for confirmation that
you are doing the right thing.  
  

    <scribbled by nfinn8421>
  

    
Sorry, the video is no longer available so I cannot respond to it.
  

    
Ah, here: http://vimeo.com/29485756

It's 7 1/2 minutes or so. It starts with Insights for the ER. The part
about the e-patient experience starts about 4 minutes in.
  

    
I have two comments:  First of all what goes on in trauma medicine
where a team of doctors and nurses are focused on keeping a single
patient alive, would be difficult to cost-effectively replicate in the
general practice of medicine because doctors and other health care
professionals are dealing with droves of patients, often several at the
same time and cannot provide the intense focus on each one.

However, changes are coming. With the increasing spread of
telemedicine, portrayed  on the video, more and more  patients will be 
seen remotely using home monitoring kits that include blood pressure
cuffs, thermometers, stethoscopes, and other tools that can transmit
vitals through the telephone to a health care professional   I cover
this extensively in chapter Six: Receiving Care across Geographic
Boundaries, where I describe in detail all the facets of telemedicine
including teletherapies of all kinds: speech, physical therapy, mental
health counseling, and home telemonitoring.  

The increasing use of smartphone health  apps that include many of
these monitoring tools that transmit health beat  blood pressure, blood
sugar, weight, temperature, pulse, over the phone to a health care
professional, as well a first aid kits that help people know what to do
in an emergency, will enable at home patient centered care to take
place, as shown in this video, with the caretaker at home and the
professional at a distance giving instructions and constantly
monitoring the patient.
http://healthcarebasics.blogspot.com/2011/11/smartphone-health-care-apps-e-pat
ients.html.


Given the shortage of primary care physicians in this country, I do
believe that over the next ten years we will see more of medicine
delivered to patients using these tools. If done well, this will reduce
the  number of unnecessary emergency room visits, reduce the cost and
improve the quality of health care for all of us.    
  

    
I certainly agree. But the "if done well" part is a pretty big "if."
Where do you see it done really well? What do they do better? What
allows/encourages those places to really do it well, while other places
do it poorly or not at all?
  

    


My husband spend nearly 5 months in the hospital this year (kaiser redwood
city ca).  I observed a lot about all this e-crap.

The staff used either computers in the nursing station itself or mobile
workstations.  the mobile stations did not use laptops.  they were large,
awkward and in everyone's way most of the time.  they were a huge pita
physically to deal with.  they could be used on battery charge or corded.
They were used for charting, of course.  but because there weren't enough to
go around, the staff carried pen/paper with them to make notes about each
patient as they made rounds (or they made mental notes to what accuracy who
knows) and then later entered the information in the system.

(keep in mind, no matter what, that the hospital (and I'm sure this is true
of most) was understaffed and the staff working overworked. It affects
everything).

The staff spend most of their time interacting with computer and relatively
little time interacting with the patient.  The understaffing meant they
didn't have time to spend with patients.  It also meant they didn't notice
things they might have if they actually looked at the patient and examinied
the patient and then actually thought about what they'd
observed.

(to be continued)
  

    
Lena,

I am sorry that your personal experience in the hospital was not a
good one.  I hope that your husband is recovered or better now and I
agree that the best option concerning hospitals is to keep out of them
and stay healthy.  However, as you stated, hand written notes are
really questionable in terms of accuracy and we do need computers with
instant information at hand when treating patients.  Their existence
and even obtrusion into the health care setting clearly does not excuse
poor interaction between the staff and the patients, nor will anyone
contend that computers resolve the issue of understaffed, overburdened
hospital personnel who are not given the proper training on the
computer which could help them become more efficient and more able to
spend more time with the patient. This is a time of transition when 
health care workers and administrators are learning how to apply the
technology to make the patient experience better, but we are not there
yet.  It does not excuse your bad experience but it is a reality. 
Think of where we would be without computers and if everything was
still manually entered into the record. The pace in health care is such
that there would be so many errors and doctors would be so handicapped
without the ability to quickly access medical databases for best
practices information.  I would be interested in how you would make
this scenario that you described better.
  

    
Joe,

We are just at the tip of the iceberg with telemedicine and home
monitoring.  I do see some good examples happening in Boston through
Partners Health Care for ongoing monitoring of chronic illness among
the elderly and other home-bound citizens.  The VA system is far and
away ahead of the curve when it comes to using cutting edge technology
(but of course they have our tax dollars to pay for these new
technologies that are available to our veterans.) There are many rural
areas in the country that I describe in the book where telemedicine is
used to deliver at home services using videoconferencing  and home
monitoring equipment for example: through Integris Health in Oklahoma,
Marshfield Clinic in Marshfield Wisconsin, St Alexius Telecare network
of North Dakota, Northwest Telehealth in Spokane Washington.  

I think that telemedicine will spread as the applications for home
monitoring continue to be rolled out, improved and become more cost
effective.  The is a complex issue because it is so dependent upon the
health insurers and Medicare agreeing to compensate for these services.
They are just beginning to realize that it is a lot less expensive to
reimburse  telemedicine services than to bring people in from great
distances to the hospital where the costs of care are so much higher.  

As far as the example in the video of a patient being examined at home
for an illness instead of going to a clinic or physician's office, I
do not see this happening yet and I have to wonder how extensive this
will become.  One of the reasons that retail clinics have sprouted
around the country is to offer people 24/7 coverage for simple medical
issues -  for example, the child with the fever and stomach ache today
might be brought into a retail clinic, as  a much less expensive
alternative to taking the child to the ER.
  

    

That comment about the doctors in the hospital reminded me that my doctor
spends more time entering things into the computer than he used to do
writing in the paper chart.

That's OK if and only if the result is better results down the line.
I can see the doctor losing important details in a very thick paper
chart that would show up online. If that's the case, then the up
front work will be worth it. 

But I want to see evidence that computerizing is really improving
outcomes. Does that evidence exist?
  

    
Jim,

There have been many studies but none that I could find that have
definitively declared that electronic health records result in better
clinical outcomes.  We all know that delivery of high quality primary
care demands that providers have the necessary information at the point
of care.  Years ago the average patient was taking a couple of
medications and an office visit rarely resulted in an order for tests. 
Today, the average patient over the age of 55 is on 10 or more
medications and one or more tests are usually ordered at an annual
check up.  Tracking all of that information on paper becomes virtually
impossible  for the primary care physician. The ability to transmit
this information to specialists that a patient might need to see from a
paper record is also difficult and prone to error. 

So although there is no statistically significant data to say that
electronic health records improve outcome, there is much evidence to
show that today, with the complexities of health care, electronic
health records do improve the quality, safety and efficiency of care
and provide physicians with an increased ability to conduct education
and research that will hopefully contribute to positive outcomes.

At the very least the electronic record contributes to continuity of
care among all of an individual's providers.  At the most, access to
our records could be lifesaving if an emergency occurs and the details
in the record are needed to make care decisions on the spot.
  

    

Nancy, <jmcarlin>'s name is Jerry.

Overall, my husband got and continues to get very good care.  He is quite
fortunate that his surgeon favors email (secure messaging in Kaiser lingo)
communications.  this has made it easy to reach him and unless he is not on
duty, he replies quickly. It avoids the horrendous intermediated telephone
attempts and telephone tag.

My point, however, was to point out how putting "electronic" into the care
equation doesn't necessarily make things better.

Another thing I observed was that so much time was spent on the computer,
that often the staff didn't share with each other when they should have.
  

    
Lena

I agree completely with you that digital communication does not
automatically make things better. During this transition time when
health care professionals are just getting their feet wet and
experimenting with technology,  there will be lot's of things that 
will not go smoothly.  That is probably what you were experiencing.  It
will take time to get the kinks out of the process. and  and all
participants to the point where computerization makes everything more
efficient.   Health care has lagged behind all other industries in
adopting communication technology.  

 I am glad that your husband had an excellent surgeon who enabled you
to experience open, secure communication via email.   I agree with you
that telephone tag is frustrating and very inefficient In the book I
talk extensively about the benefits of email and email etiquette that
doctors and patients should follow.  
  

    
One of the things that Lena's story points up is core to this
discussion: The technologies themselves can be great enablers, but only
enablers. The core of medicine and healthcare is built on direct
relationship, direct observation, and human judgment. And how we build
and use the technology is key to whether we enhance or degrade the
experience. 

For instance, in Lena's tale: I am a Kaiser patient as well, and have
experience with the Kaiser system in the primary care setting, and have
discussed its use with my doctor, who is head of quality for the area.
Lena mentioned the wheeled stands that they are on, rather than a
tablet or laptop. My doc says that is to do two things: free up the
doctor's hands, and specifically to allow the stand and keyboard to be
placed in such a way that the doctor does not have to turn away from
the patient while interacting with the computer—and can turn the
monitor so that the patient can easily see an X-ray or whatever without
moving from the bed or examining table. 

Kaiser involved some 160 docs from throughout the system, as well as
nurses and other clinicians, in a lengthy, repeated process of
designing the system to work well in their environment. How people work
with it still is being refined, it sounds like — along with the
problems of understaffing.