SHIFTING PERSPECTIVE

S IN HEALTHCAREBecoming Partners

with Patients

Carl Steylaerts

@lygidakis

@rqgb

@gregjirving

image by @rqgb

Patients are increasingly interested in sharing their

experiences and learning about their conditions.

The e-patients seek online health information, connect

and collaborate with the others and take advantage of

this medium not only for decision making and

management of their own condition, but also for

education and advocacy.

e-Patients are

equipped

engaged

empowered

enabled

“

”Tom Ferguson

A cooperative

model of health

care that

encourages and

expects active

involvement by all

connected parties

as integral to the

full continuum of

care.

Patient engagement involves a shift in

perspective, rights, and responsibilities.

Rich conversations await us as patients

and providers alike shift away from the

paternalistic past and toward the shared

responsibilities of participatory medicine.

Rita Lidia Stara is a mother of three

children, two of whom have been

diagnosed with Type 1 Diabetes

Mellitus.

She focused on improving the quality

of life of the diabetics by launching and

promoting public campaigns to raise

awareness of the disease.

Chair of Federazione Diabete Emilia

Romagna and chair of the Italian

Diabete Forum.

Marie Ennis O’Connor was diagnosed

with breast cancer at the age of 34.

In her search to make sense of the

experience of cancer and integrate it

into her life, she started blogging in the

Journeying Beyond Breast Cancer,

because she found it hard to access

information on how to deal with the

post-treatment limbo.

Co-founder of #BCCEU, Europe's first

breast cancer social media chat and

participates in the Health 2.0 network.

Which are your expectations as an

(e-)patient?

For my doctor to provide me with

all the information I need to make

an informed decision and to be

prepared to work in partnership to

achieve the best health outcomes

suitable for me.

“

”

How do you see the role of Family

Doctors in such a system?

Family doctors play a key role in

determining to what extend the

patient’s level of engagement grows

- or not. Patients want to trust that

their family doctor knows them as

an individual and will offer advice

and treatment suitable to their

individual needs, taking into

account family and personal

circumstances.

“

”

Stephen Heywood was diagnosed with

ALS in 1998 at the age of 29.

Stephen's family made many

attempts to slow his disease and

treat his symptoms, but the trial-

and-error approach was time-

consuming and repetitive.

They wonder - “Is what I’m

experiencing is normal?” or “Is

there is anyone out there like

me?”

They believed there had to be a

better way.

Inspired by the life experiences of

Stephen Heywood, PatientsLikeMe

was founded in 2004 by his brothers

Jamie and Ben Heywood and long-time

family friend Jeff Cole.

On PatientsLikeMe’s network, people

connect with others who have the

same disease or condition and track

and share their own experiences.

Dave deBronkart

e-patient Dave

TEDx Maastricht Talk

this is a road to a danger zone - identify

and suggest ways to overcome the dangers

this is a road to better health - explain why

and how

this is a road to unknown territory, we

need to be educated - how to do that?

this is a road against the healthcare

silos, to the borders of tailor-made medicine,

politics, insurance companies, patients and

family doctors - how can we interact with each

other?

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