This was a joint workshop between WONCA Europe and the Vasco da Gama Movement and was held in the WONCA World Conference 2013 in Prague. Background The Internet-savvy users, the so called e-patients, seek online health information, connect and collaborate with others and take advantage of this medium not only for decision making and management of their own condition, but also for education and advocacy purposes. The connectivity and the wide availability of a large amount of data, thanks to worldwide health databases, mobile devices and personal health records, enable the patients to play an active role in healthcare at an individual and community level, as shown by the connected communities of care and the movement of participatory medicine. Relationships between clinicians and patients are bound to be transformed fundamentally. In this context, it is crucial now, more than ever, that Family Doctors become partners with patients and lead the way into a new paradigm of Medicine. Aim The aim of this interactive workshop is to present this ever evolving scene and explore the ways with which Primary Care and Family Medicine can stay relevant. Expected Results This workshop will try to show that the Internet is not a grocery shop, but a vast field with four corners: the corner of what is known (evidence), the corner of what we feel (gut feeling), the corner of what we think (fantasy, perception) and the corner of what we want (dreams, hope). We expect that by the end of the workshop we will have discussed some of the characteristics of the e-patient communities and outlined some strategies for the cooperation with this new generation of empowered patients.

1. SHIFTING
PERSPECTIVES
IN HEALTHCARE
Becoming
Partners with
Patients
Carl Steylaerts
@lygidakis
@rqgb
@gregjirving
image by @rqgb

2. 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.

3. e-Patients are
equipped
engaged
empowered
enabled
“
”Tom Ferguson

4. A cooperative model
of health care that
encourages and
expects active
involvement by all
connected parties as
integral to the full
continuum of care.

5. 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.

6. Rita Lidia Stara is a mother of three children,
two of whom have been diagnosed withType 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.

7. 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.

8. Co-founder of #BCCEU, Europe's first breast
cancer social media chat and participates in the
Health 2.0 network.

9. 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.
“
”

10. 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.
“

11. Stephen Heywood was diagnosed with ALS in
1998 at the age of 29.

12. 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.

13. 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.

14. Dave deBronkart
e-patient Dave
TEDx MaastrichtTalk

19. 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?