What do patients understand as quality healthcare is not the same as what healthcare providers and policy makers understand

1. Patient-designed healthcare:
an utopia or the new reality?
Kathi Apostolidis-Vice President
European Cancer Patient Coalition

2. ECPC-European Cancer Patient Coalition
• Established in 2003
• Only European organization governed by
cancer patient groups
• 340 members in 44 countries
• All age groups, ethnic communities,
cancer types
• Full members European patient groups
governed by patients, for patients

3. European Cancer Patient Coalition
Mission
Equip, Enable, Engage & Empower our
members to
• actively advocate for equality in access
to front line cancer care and
• to engage in all aspects of cancer care,
treatment and research locally, nationally
and internationally
“Nothing about us without us”

4. • Hospitals, surgeries designed to meet
needs of people working in them, finances
of governments paying for them
• Healthcare policies dictated by medical
profession, politicians, health industry
• Health technology, medicines, research
conducted by technicians, scientists alone
Where is the patient?
European Cancer Patient Coalition
How is healthcare designed?

5. Where is the patient?
• The “new” patient is online! & in online/offline
communities
• He searches for information about his disease,
new therapies,
• He discusses about his preferences with his
doctors
• He seeks to contact peer patients
• Exchanges information
The “new” patient wants to meaningfully
participate in his care!

6. What does “healthcare” know
about the new breed of patients?
Men Elderly
Women
Families
Ethnic
groups migrants
Youth
Children

7. Who were the most acclaimed speakers
at the Quality of Care Conf. in Chania,
Crete last Friday?
European Cancer Patient Coalition
Margaret Murphy: Patients for Patient
Safety, World Health Organization
(WHO) World Alliance for Patient Safety
Chair – RA Patients
Association of Crete
Marina Tzanakis-
Chair-EFZO me ton
Karkino-Cancer
Patient Association
Crete

8. Why did audience gathered on Saturday
in Hall5.1. at ECCO in Amsterdam?
European Cancer Patient Coalition

9. Patient-designed healthcare?
European Cancer Patient Coalition
• CML AdvocatesNetwork @cmlnet 28 Sep
Adherence strongly influenced by doctor-patient relationship: well-
informed patients & approachable doctors drive adherence
#ECC2013 #ECCH5

10. European Cancer Patient Coalition
Patient-designed healthcare?

11. European Cancer Patient Coalition
Patient-designed healthcare?

12. Patient-designed healthcare?
CHAORDIC: What if your data did not
have to die in dusty paper files and
unconnected electronic silos? What if
many private institutions, non-profit
organizations, research centers,
government entities and individual
patients decided to share data? What if
we could do this over a span of years
creating an ever larger data set? That
data set could be accessed by the many
in a timely fashion that will enable both
the individual and the organization to
make informed health decisions.

13. Patient-designed healthcare:
the new reality
• Informed Shared Medical Decision Making
• Quality of Care
• Patient empowerment to understand his
disease, his treatment & care & to speak
about his preferences
• Respect of patient dignity & preferences
• Patient involvement in healthcare policy
planning, design of research, medicines
development, evaluation of health care
providers

14. Thank you for your attention!
Kathi Apostolidis – Vice President
ECPC/Belgium
Chair –Intergroup Committee for Cancer
Patient Rights Advocacy /Greece
Board Member –KEFI – Cancer Patients,
Doctors & Friends Association/Greece
Twitter: @kgapo, @cancereu, #opnhealth
YouTube: ECPCTV
Facebook: European Cancer Patient Coal.ition,
#opnhealth
Wordpress: http://epatientgr.wordpress.com
Pinterest: Kathi Apostolidis
CREDITS: Art Work from Regina Holliday's Medical Advocacy Blog
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