Hi <strong>Telehealth Alliance of Oregon</strong>,Your friend, <strong>Cathy
Britain</strong>,
has recommended this article entitled '<strong>'E-Patient Dave' tells
medical
informatics group to let patients help</strong>' to you.<strong>Here is
his/her
remark:</strong>Several of us had the opportunity to hear e-Patient Dave
soeak
at the 2013 NRTRC conference in Billings. He provides the patient
perspective
regarding "participatory medicine" and the opportunities that technology
presents
for that participation.
I thought you might enjoy this article about his keynote address to the
American
Informatics Association conference.
Best,
Cathy<strong>'E-Patient Dave' tells medical informatics group to let
patients
help</strong>Posted By Neil Versel On November 19, 2013 (8:00 am) In <a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fmobihealthnews.com%2fcategory%2funcategorized%2f&r=3324282094&d=168975&p=1&t=h"
title="View all posts in Uncategorized" rel="category
tag">Uncategorized</a><p><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fmobihealthnews.com%2fwp-content%2fuploads%2f2013%2f11%2fDave_deBronkart.jpg&r=3324282094&d=168975&p=1&t=h"><img
class="alignright size-full wp-image-27466" alt="Dave_deBronkart"
src="http://mobihealthnews.com/wp-content/uploads/2013/11/Dave_deBronkart.jpg"
width="163" height="240" /></a>Growing pains and other hiccups in the
sharing
of data with patients doesn’t mean healthcare providers should stop
trying
to make information more accessible to consumers or that people should stop
demanding
to be more at the center of their own healthcare, a well-known advocate of
<strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fen.wikipedia.org%2fwiki%2fParticipatory_medicine&r=3324282094&d=168975&p=1&t=h">participatory
medicine</a></strong> told an audience of medical informatics
professionals.</p>
<p>Keynoting the opening session of the <strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fwww.amia.org&r=3324282094&d=168975&p=1&t=h">American
Medical Informatics Association</a></strong> (AMIA) Annual Symposium in
Washington
on Sunday, cancer survivor <strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fepatientdave.com&r=3324282094&d=168975&p=1&t=h">“e-Patient”
Dave deBronkart</a></strong>, a one-time marketing professional in the
typesetting
industry, pointed out that a press-printed Bible from 1631 omitted an
important
word from the Seventh Commandment: “not.” This infamous
<strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fen.wikipedia.org%2fwiki%2fWicked_Bible&r=3324282094&d=168975&p=1&t=h">“Wicked
Bible”</a></strong> instructed readers: “Thou shalt commit
adultery.”</p>
<p>Though there was outrage at the time, the world didn’t abandon the
printing
press in favor of the pre-Gutenberg ways of transcribing every copy of
every
manuscript by hand, deBronkhart said. Similarly, mistakes—even of the
dreadful
variety—should not derail momentum as healthcare shifts from a
provider-centric,
paper industry to an electronic one with the patient at the center, he
argued,
since the old way is so inefficient and often dangerous.</p>
<p>After being diagnosed with Stage 4 renal cell carcinoma in 2007,
deBronkart
was not given much of a chance at survival. Frustrated, the longtime
Internet
user turned to the <strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fwww.acor.org%2f&r=3324282094&d=168975&p=1&t=h">Association
of Cancer Cancer Resources</a></strong> (ACOR) website for ideas.</p>
<p>Within an hour of logging onto ACOR, deBronkhart had discovered a lot of
advice
he didn’t see in “establishment” medical journals or
websites,
which said things such as, “prognosis is bleak,” and
“outlook
is grim.” Among his finds was that one of four doctors in the country
who
did an experimental treatment known as high-dosage interleukin-2 (HDIL-2)
was
at Beth Israel Deaconess Medical Center in Boston, where the New Hampshire
resident
already had been a patient.</p>
<p>“This is useful information when your back is against the
wall,”
deBronkhart said.</p>
<p>“I turned to the patient cancer community and I got 17
stories,”
he continued, and eventually got approved for HDIL-2 treatment. Every side
effect
that hit him during the four-week regimen was mentioned by other patients
in
one of the online groups he frequented.</p>
<p>“Surgery and interleukin worked,” said deBronkart, author of
three
books, including his latest, <strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fwww.amazon.com%2fPatients-Help-Patient-Dave-deBronkart%2fdp%2f1466306491&r=3324282094&d=168975&p=1&t=h">“Let
Patients Help.”</a></strong> DeBronkart is alive and well today, and
fulfilled
his wish of dancing with his daughter at her wedding. This year, he became
a
grandfather.</p>
<p>“How can it be that the most useful and relevant information can
exist
outside the traditional medical literature?” deBronkart asked the
audience.
Because of the Internet, people can connect in ways they could never do so
before.
DeBronkart noted that 2014 is the 20th anniversary of Mozilla and the
public
World Wide Web, which has become like a system of capillaries sharing
nutrients,
growing ever more powerful as information and users have proliferated.</p>
<p>The E in e-Patient Dave could stand for equipped, engaged, empowered or
enabled,
depending on the context, deBronkart said. He first noticed the potential
of
what has come to be known as e-patients way back in 1989, when he was the
lead
sysop (administrator) of the CompuServe forum for attention deficit
disorder,
when ADD was a somewhat new diagnosis. “We had 10,000 active members,
and
I do mean active,” deBronkart said.</p>
<p>Doctors used to tell him to stay off the Internet to avoid scaring
himself,
deBronkart said. Then he noted that he met his wife on Match.com in 1999,
when
online dating was still kind of a novelty. In justifying his Internet
searches
for answers to health questions, deBronkart joked, “Well, before I
found
Ginny, I went through some suboptimal search results.”</p>
<p>The lesson? “Don’t assume that any one source is
perfect,”
deBronkart said. This includes medical professionals. However, he said not
to
interpret this attitude as being anti-doctor. “It’s about being
a
good partner with the doctor.”</p>
<p>DeBronkart noted that the late <strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fwww.doctom.com%2f&r=3324282094&d=168975&p=1&t=h">Dr.
Tom Ferguson</a></strong>, who was doing some of the preliminary work for a
group
that became the Society of Participatory Medicine when he died in 2006,
cautioned
that it “may be more dangerous <i>not</i> to Google your
condition.”
Looking up information online is no more anti-doctor or anti-medicine than
Copernicus
and Galileo were anti-astronomer, Ferguson also said.</p>
<p>DeBronkart explained that Dr. Gunther Eysenbach, founder of the
<strong><a
href="http://x.jmxded92.net/y.z?l=http%3a%2f%2fwww.jmir.org%2f&r=3324282094&d=168975&p=1&t=h">Journal
of Medical Internet Research</a></strong>, spent three years looking for a
single
instance of “death by Googling.” Eysenbach, a self-described
“infodemiologist”
at the University of Toronto by way of Freiburg, Germany, came up
empty.</p>
<p>“People perform better when they are informed better,”
deBronkart
said. “It’s perverse to keep people in the dark and then call
them
ignorant,” he added.
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