PATIENTS FOR PRIMARY CARE
–WHY WE CANNOT DO IT ALONE
Anders Olauson,
EPF President
Agrenska Chairman
The Future of Primary Care in
Europe IV, Gothenborg,
September 3-4 2012
EPF About us
• Independent, non-governmental
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umbrella organisation set up in 2003
VISION: High-quality, patientcentred, equitable healthcare for all
patients in the EU
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MISSION: To provide a strong and
united patients’ voice –> Putting
patients at the centre of EU health
policy
54 member organisations – 150 million patients with
chronic conditions across the EU
Future of primary care
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Much of the patients’ care journey, and of their quality of life,
depends on the quality of primary care
Essential for prevention (primary and secondary) screening,
diagnosis, care coordination, information to patients…
Challenges facing healthcare among which demographic trends
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are affecting primary care.
Our current healthcare system are not generally geared
towards patients’ with chronic diseases’ needs: redesigning
healthcare systems to ensure high quality chronic disease
management
It is essential to take into account the patient perspective to
ensure we truly place the patients’ need at the centre of care
Meaningful patient involvement
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Patient involvement in health-related decisionmaking is a fundamental right …
& a crucial element for the future of healthcare,
and to provide patient-centered care
Through our project Value+ we explored patient
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participation in EU health research, and
developed the concept of meaningful patient
involvement, along with indicators and tools to
implement it.
Patients experience in navigating health systems
can help in identifying barriers and areas for
improvement, as well as good practices.
Coordination of care
• Currently patients report they struggle to obtain the care they
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need
Integration of care need to be vertical (between different
levels within the whole healthcare system)– and horizontal
(between health and social care)
Primary care has a key role subtitle
to play in integrating care and
empowering patient to remain independent longer with
sufficient support
the needs of patients, their families and carers need to be truly
at the centre
Coordinated intervention between different actors of primary
care is also essential for prevention & adherence intervention
Information to patients
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Healthcare professionals are the first source
of trusted information to patients
But key mismatch in communication:
patients report they want more than what
healthcare professional give
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Patients have a fundamental right to access high quality
information about a variety of topic relating to their health
condition and treatment – in a format that is accessible to
them, at the time when they need it – one size does not fit all
Core quality criteria developed at the EU pharmaceutical
forum with input from patient organisations: a model to follow
Health literacy
the capacity to obtain, interpret and
understand health information; to make sound
health decisions; and to navigate the health
services.
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Primary healthcare plays a central
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building patients’ health literacy
patients, when informed, empowered and involved, are an
asset to society…. & for healthcare professionals : moving
from monologue to a dialogue, with truly productive
discussion
better health outcomes & sustainability
of healthcare
EPF calls for comprehensive strategy on information to
patients at EU level that encompass health literacy
”Patient literacy”
 Healthcare providers have a key role to play in providing an
enabling healthcare environment for the patients.
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Shared decision making: Moving from adherence to concordance: a
patient- clinician interaction whereby both partner are in a
therapeutic alliance
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Key role of patient and their organisations
in identifying needs in terms of skills,
competences, and continuing professional
development
EPF calls on the EU institutions and member states to take into
account the patients perspective in debates around planning in
healthcare and skill needs of the health workforce
Innovation and primary care
 Patient involvement and empowerment will become necessary
with innovative form of care: e.g. Personalised medicines
 Importance of ICT Technologies and eHealth to support care
coordination, patient empowerment and shared decisionmaking
 EPF’s projects in this area: subtitle
led by EPF in collaboration with healthcare
professionals organisations- focusing on user
perception and acceptance of telehealth
Setting real life telemedicine pilots in 9
European regions
developing and deploying a basket of services
in 11 European regions providing patients’
access to Electronic Health Records
EUPATI: a breakthrough model
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An unprecedented collaboration: Patient organisations,
health professionals, health tech experts, health NGOs,
pharma industry
Our starting points: Patients want and need more
information but are unaware of research & their role in it.
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Patient advocates play a key role in providing information,
but may lack education and training to participate in
research
Benefit for patients: understanding more about,
and thus contributing to the multiple facets
of evidence-based new medicine.
What we aim to achieve:
EUPATI Certificate Training Programme
Patient Ambassadors in committees, HTA agencies, industry, regulatory
bodies, academia etc
Patient Journalists raising awareness
Patient Trainers for patient communities and networks.
100
patient
advocates
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EUPATI Educational Toolbox
Educational tools for patient advocates (print, slide shows, eLearning,
webinars, videos) for patient advocates
12.000
patient
advocates
EUPATI Internet Library
Patients & lay public at large, e.g. on specific aspects of the
development process of medicines for patients with low (health)
literacy.
100.000
individuals
Final Thoughts
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Primary care is bound to have a pivotal role for chronic disease
management
Patient empowerment and meaningful involvement are critical
success factors in achieving the right changes to provide high
quality, sustainable healthcare to patients, and to improve their
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quality of life
Patients are not cost drivers. They are an
essential part of the solution: Patients
have the experience, will and ability to
contribute meaningfully to all health
related decision making – whether
individually or collectively.
THANK YOU FOR YOUR ATTENTION!
More information:
www.eu-patient.eu
www.agrenska.se