This document discusses the rise of empowered patients, or "e-patients", who use the internet to research their medical conditions and treatments. It describes how e-patients have formed online communities to share information and support each other. Some key points made are that e-patients feel more prepared to discuss their care with doctors due to their online research, and that the collective knowledge of e-patients researching online may uncover new findings more quickly than doctors alone. The document also outlines e-patients' wishlists for more online access to medical records and consultations.

1. April Meeting
PATIENTS 2.0
INTRODUCING THE
EMPOWERED PATIENT
MARIE ENNIS O’CONNOR

3.  e-Patients represent the new
Wikipedia breed of informed health
Definition consumers, using the Internet to
gather information about a
medical condition of particular
interest to them.
 Encompasses both those who
seek online guidance for their
own ailments and the friends and
family members who go online on
their behalf.

4. Tom Ferguson MD: “the
George Washington of patient
empowerment”

5. E-Patient Dave
Diagnosed with terminal kidney cancer
Given 24-weeks to live.
David de-Bronkart
Joined online cancer patient community.
Learned of a clinical trial for a powerful
drug that only sometimes works.
It worked!
Today he leads the Society for
Participatory Medicine.

6. It is not a failure on the doctor’s
part. There is so much going on
these days. It is impossible for
any one person to keep track of
every new development. But an
army of patients connected
through and fostered by the
internet, may do a better job
collectively. Smart patients can
find things that doctors haven’t
seen.

7. Katherine
Leon
Patient Advocate for
Women with Heart
Disease, esp.
Spontaneous Coronary
Artery Dissection
(SCAD)
Rare disease
Patient initiated
research Mayo Clinic

10. Information era converging
with
the digital era
A new model of
medicine is being
induced by the digital
era and the altered way
in which information
will be flowing.

13. New healthcare
paradigm cannot be
adequately
understood in terms
of our older medical
constructs, including
many still taught in
medical school and in
continuing medical
education.

15. The Internet is a place, an
environment, made up of
people and their myriad
interactions. It is not
merely a technology but a
new way of
cooperating, sharing, and
caring
Vinton Cerf, American
computer scientist, who is
recognized as one of "the
fathers of the Internet."

17. Pew Research Center’s Internet & American Life Project

18. Pew Research Center’s Internet & American Life Project

19. Women are more Men are more
likely to search for likely to search
specific diseases and for
other medical information
problems, reflecting relating to
their traditional role sexual health,
as family health drugs, alcohol,
caregivers. and smoking.

20. How do e-
patients use
the internet?
The The
Pew Internet Study The Well Chronics
Acutes

21. The Well
Browse for
general health
and wellness May look up
About 60 - 65 % of e- They are the
patients are well. information. pertinent
lightest and
medical
least
information
frequent Often serve as
Think about their online before
health only occasionally users of managers for or after a
and sporadically. online health other family doctor’s visit
resources. members’
health .
concerns.

22. The Acutes
Many use the
About 5 - 6% of e- Internet
patients facing a new Reaching out Participate in
every day. to online
medical concern or
challenge. professionals medical
Searches and patients discussions
online they have and support
resources found online. communities.
intensively.

23. The Chronics
Use it to Most likely to
About 30-35 % of e- manage their develop Web
patients have one or illnesses and to sites for their
Moderately condition, to
more stable chronic heavy users help them keep
up to date on post content
illnesses, but are not of online their to help others,
currently dealing with a
health conditions. and to respond
pressing short-term to the
medical challenge.
resources.
questions of
Often active other patients.
participants in
online support
communities

24. Satisfaction Doctor-patient e-mail
Ratings More information
Ability to schedule about drug interactions
Most e-patients appear
appointments online
to be quite satisfied
with most aspects of
their experiences using
online health resources.
82% frequently found
BUT - a significant percentage of e-
the information they patients said that they would have
are looking for online. liked certain desired services or
features they did not find online
61 % said that online
information improved Access to medical
Online diagnostic tools
the way they take care records and test results
of themselves.

25. One e-patient in seven has made an appointment to
see a doctor because of information or advice she
found online.
More Stats
Responses from Pew One in seven has asked the doctor to prescribe a
Internet study. specific medication he learned about online.
Patients who have searched for medical information
online are considerably more likely to consult
doctors than are non-e-patients.
Expertise increases with use - more skilled at
searching online - more likely to post online content
for other patients.

26. E-Patients’ Use Helps them feel:
Of Internet
“What I find online  less dependent
helps me to feel
prepared to talk with  less fearful of the unknown
doctors and nurses. I
know the terminology  more capable of asking well-
and the options.” informed questions
 more capable of evaluating
options

27. Our first visit to the neurologist, when
my son was diagnosed with autism,
was not as devastating as it could have
been. My husband and I were well
informed and had already figured out
the diagnosis by the time we saw the
doctor. By being better informed, that
first visit was very informative and
constructive because we knew the
background information, weren’t in
denial, and could discuss therapies
and tests in a logical way.

32. Patients Like Me – a
chronic disease social
network with over 170,000
users & over 1,000 diseases
are using crowdsourcing –
asking the public to help in
their medical research .
The data generated from
users has resulted in a
number of significant
publications.
is a social network of
patients connected by their
experiences with disease.

33. The patients who produce these sites don't know everything a
physician might know, but they don't need to.
They are smart,
motivated, and
experienced patients
with an impressive and
up-to-date knowledge
of the best sources,
centres, treatments,
research, and specialists
for their condition.
Particularly knowledgeable on practical coping tips and the
psychological and social aspects of living with a chronic condition .

34. We are learning that we are
qualified through our
experience, our knowledge,
and our concern. We now
see that we are capable of
contributions no professional
can make and that by linking
our efforts [with those of
professionals] in a
coordinated team, we can
advance the well
being of all.
Samantha Scolamiero,
founder of the
BRAINTMR mailing list

37. Amy Tenderich,
Founder of Diabetes Mine
We will use tools that
answer our questions and
solve our problems. We
will avoid tools that help
us do what you think we
should do and we won't
use tools that add to the
work of caring for
ourselves.

42. Montefiore Medical Center in New York City
Montefiore started a clinic that would see patients 7 days after discharge
to go over medications, post-op activities and care and answer any
questions that the patients had.
Patients were given a
wristband with
Montefiore’s 24/7
Hotline number and
told to call with any
questions
whatsoever. The
wristband is a big hit
with the patients.

45. 60% of GP surgeries have the technology in place to
allow patients online access to their records, yet at
the moment less than 1% offers this.

47.  Patients /"consumers" -- will be
E-Patient enabled to take active ownership
Wishlist of their health.
 Personal health data will be at
“With free access to
medical the centre of our genome-
information, patients
like me can drive our
informed, personalised medical
own care for the first future.
time in history” ~ Amy
Tenderich  Web-based patient portals.
 Online consults/e-visits.
 International standards for
mHealth.

48. But often the most
important revolutions
aren’t announced with
the blare of trumpets.
They occur quietly, too
slowly to make the
news, but fast enough
that if you aren’t alert,
the revolution is over
before you’re aware it’s
happening.

49. C0nnect With Me
@JBBC
http://journeyingbeyondbreastcancer.com
http://hcsmmonitor.com