The Other Side of the Firewall -

Social Media Developments

in Other Specialities

ESCP Milan, 28-30 September, 2016

Marie Ennis-O’Connor

@JBBC

Firewall

A system designed to prevent

unauthorized access to or

from a private network.

Encouraged medical professionals to treat

patients as equal partners in achieving better health

outcomes.

Enabled

Empowered

Engaged

“I’m convinced that

our next exponential

leap in medical

progress depends on

us learning from

networks of

microexperts”

Roni Zeiger MD

Smart Patients

“I don't think the

doctor needs the

patient to become the

doctor...we need each

other, to combine our

expertise”

Ted Eytan MD

“Living day in and day out with these illnesses

gives us an awareness of them and a

perspective doctors cannot fully understand”

Catherine Richardson, Gastroparesis Patient

“It is the kind of wisdom you

get only from living and

breathing with this illness

every single day of your life

outside of the confines of the

hospital walls

I experienced it first-hand

when I discovered the online

Cystic Fibrosis community and

it has completely transformed

my healthcare and my life”

Susannah Fox Chief Technology Officer of the US

Department of Health and Human Services

“Technology allows us

to widen the network

of people we can talk

with, increase the

velocity of those

conversations, inject

them with more

source material, then

archive and make

them searchable”

“The opportunity to

collect and organize the

incredibly valuable

knowledge that patients

and caregivers are sharing

with one another has the

potential to change the

game for many living

with chronic conditions

and beyond”

• Live Twitter event

• Dedicated hashtag #

• A chat “host”

moderates the

conversation

• Transcript of tweets

available after the

chat

• The impact of the technology-driven, big data, uber-information era we now live in is certainly not unique to healthcare, but its effect on treatment, operations and patient-doctor interaction within the industry are outstanding.

• The effects on how a patient approaches their health and treatment programs are particularly transformational. We’ve entered an era of self-empowerment, self-efficacy, and self-advocacy amongst patients.

Alicia Staley

Jody Schoger

Dr Deanna Attai

And I stumbled upon conversations among women

trying to find answers to very basic questions that I

felt should have been answered by their physicians.

Some women were truly uninformed, but many were

simply overwhelmed.”

“What I found was a very large breast cancer

community, from newly diagnosed women to those

with metastatic breast cancer, all supporting one

another online.

Deanna Attai MD

The healthcare conversation is no

longer a one-way narrative but is

evolving into a global, participatory

online discussion

“An army of patients

connected through and

fostered by the

internet can find

things that doctors

haven’t seen”

Dave deBronkart

aka “ePatient Dave”

“In 2003, my

cardiologist told me I

would never meet

another SCAD patient

It was just too rare

Today, I “know” more

than 1,000 fellow

survivors – all because

of social media”

“This isn’t an addition to

your job. This is part of

your job. This is where

our patients are these

days and this is where we

need to reach them.”