patients 2.0 introducing the empowered patient
TRANSCRIPT
PATIENTS 2.0 INTRODUCING THE
EMPOWERED PATIENT
MARIE ENNIS O’CONNOR
April Meeting
Wikipedia Definition
e-Patients represent the new breed of informed health 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.
Tom Ferguson MD: “the George Washington of patient empowerment”
E-Patient Dave
David de-Bronkart
Diagnosed with terminal kidney cancer Given 24-weeks to live.
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.
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.
Katherine Leon
Patient Advocate for Women with Heart Disease, esp. Spontaneous Coronary Artery Dissection (SCAD)
Rare disease
Patient initiated research Mayo Clinic
A new model of medicine is being
induced by the digital era and the
altered way in which information will be flowing.
Information era converging with the digital era
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.
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."
Pew Research Center’s Internet & American Life Project
Pew Research Center’s Internet & American Life Project
Women are more likely to search
for specific diseases and other medical problems,
reflecting their traditional role as
family health caregivers.
Men are more likely
to search for information relating to
sexual health, drugs,
alcohol, and smoking.
How do e-patients use the internet?
Pew Internet Study The Well The Acutes
The Well
About 60 - 65 % of e-patients are well.
Think about their health only occasionally and sporadically.
They are the
lightest and leastfrequent users of online health
resources.
Browse for general
health and wellness
information.
Often serve as
managers for other
family members’
health concerns.
May look up
pertinent medical
information online before or
after a doctor’s
visit .
The Acutes
About 5 - 6% of e-patients facing a new medical concern or challenge.
Reaching out to
professionals and patients
they have found online.
The Chronics
About 30-35 % of e-patients have one or more stable chronicillnesses, but are not currently dealing with a pressing short-term medical challenge.
Moderately heavy users of online health
resources.
Most likely to develop Web sites for their
condition, to post
content to help others,
and to respond to
the questions of
other patients.
Satisfaction Ratings
Most e-patients appear to be quite satisfied with most aspects of their experiences usingonline health resources.
82% frequently found the information they are looking for online.
61 % said that online information improved the way they take care of themselves.
BUT - a significan
t percentag
e of e-patients said that
they would
have liked certain desired services
or features they did not find online
More Stats
Responses from Pew Internet study.
One e-patient in seven has made an appointment to see a doctor because of information or advice she found online.
One in seven has asked the doctor to prescribe a 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.
E-Patients’ Use Of Internet
“What I find online helps me to feel prepared to talk with doctors and nurses. I know the terminology and the options.”
Helps them feel:
less dependent less fearful of the unknownmore capable of asking well-
informed questionsmore capable of evaluating
options
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.
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.
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 .
We are learning that we are qualified through our
experience, our knowledge, and our
concern. We nowsee that we are capable of
contributions no professional can make and
that by linkingour efforts [with those of
professionals] in a coordinated team, we can
advance the wellbeing of all.
Samantha Scolamiero, founder of the BRAINTMR mailing list
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.
Amy Tenderich,Founder of Diabetes Mine
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.
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.
E-Patient Wishlist
“With free access to medical information, patients like me can drive our own care for the first time in history” ~ Amy Tenderich
Patients /"consumers" -- will be enabled to take active ownership of their health.
Personal health data will be at the centre of our genome-informed, personalised medical future.
Web-based patient portals.Online consults/e-visits.International standards for
mHealth.
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.
@JBBC
C0nnect With Me
http://journeyingbeyondbreastcancer.com
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