[TAO] Recommended Article By Cathy Britain: 'E-Patient Dave' tells medical informatics group to let patients help

[Cathy Britain]

Hi Telehealth Alliance of Oregon,
Your friend, Cathy Britain, has recommended this article entitled
''E-Patient
 Dave' tells medical informatics group to let patients help' to you.

Here is his/her remarks:
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

'E-Patient Dave' tells medical informatics group to let patients help
Posted By Neil Versel On November 19, 2013 (8:00 am) In Uncategorized

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 participatory medicine told an
audience
 of medical informatics professionals.

Keynoting the opening session of the American Medical Informatics
Association
 (AMIA) Annual Symposium in Washington on Sunday, cancer survivor
"e-Patient"
 Dave deBronkart, 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 "Wicked Bible" instructed
readers:
 "Thou shalt commit adultery."

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.

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 Association of Cancer Cancer Resources (ACOR) website for
ideas.


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.

"This is useful information when your back is against the wall," deBronkhart
said.


"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.

"Surgery and interleukin worked," said deBronkart, author of three books,
including
 his latest, "Let Patients Help." DeBronkart is alive and well today, and
fulfilled
 his wish of dancing with his daughter at her wedding. This year, he became
a
 grandfather.

"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.

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.

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."

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."

DeBronkart noted that the late Dr. Tom Ferguson, 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 not 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.

DeBronkart explained that Dr. Gunther Eysenbach, founder of the Journal of
Medical
 Internet Research, 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.

"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.


Article taken from mobihealthnews - http://mobihealthnews.com
URL to article:
http://mobihealthnews.com/27464/e-patient-dave-tells-medical-informatics-group-to-let-patients-help/

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