patients 2.0 introducing the empowered patient

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

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