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Patient Empowerment: a lever for change
Putting truly the patient at the centre of health policy
Valentina StrammielloEuropean Patients’ Forum
3rd WP7 meetingIstituto Superiore di Sanità, Roma
July, 2-3, 2015
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Mission and Vision of EPF
European Patients’ Forum:
• umbrellalorganisation
• active since 2003
• 65 member organisations
Our Mission!• “To ensure that the patient community
drives health policies and programmes that are adapted for their final users, patients.”
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A Definition of Patient Empowerment
A multi-dimensional process that helps people gain control over their own lives and increases the capacity of people to act on issues that they themselves define as important . Luttrell et al. (2009), Understanding and operationalising empowerment. Overseas Development Institute working paper.
“”
Three levels:• Micro (individual patient)
• Meso (organisational level)
• Macro (policy level)
Community empowerment
Personal empowerment
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Individual and Community Empowerment
Model of the critical components of community empowerment and the process by which it may be achieved (Rissel, 1994, s 43)
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(Dis)empowerment is a major issue
Burden of chronic disease
Impacts of illness: physical,
psychological, emotional, social,
financial …
Health system difficult to navigate:
patients often feel disempowered in
their interactions with “the system”
– having to fight to get what they
need
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(Dis)empowerment: contributing factors
• Micro level :
– Lack of communication between patient and healthcare professional
• Meso level :
– Care delivery processes and design of the environment
• Macro level :
– (Lack of) Information to patient
– Implementation of patients rights laws
– Opportunity for patients to participate in health policy
– (Lack of) Transparency of the system
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EU Policy challenge: Health systems
Acute/hospital vs.
chronic/long-
term/community
Too simplistic
Financial
constraints
Do not meet
patients’ needs
Organisation and
delivery of healthcare
European
health
systems:
Sustainability
challenge
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EU Policy Context
EU Reflection
Process on
Chronic disease
management
March
2010 Eurobarometer
study on “Patient
Involvement”
May
2012
Mapping Study
(EMPATHiE)
Sept.
2014
Chronic disease
patients are more
knowledgeable and
motivated to be
involved in their care
– also more critical of
health system
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EU Policy Context
Patient-
centredness
recognised as a
key dimension of
quality
Expert panel opinion on EU’s
future quality of care agenda
(incl. EPF)
Case for further work at EU level to define
and measure it
“Pockets” of empowerment in
existing EU regulations and soft
laws
Cross-border healthcare
Quality and Safety of
medicines
Medical devicesEPF
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Self-management: a networking approach
Good practice
Advocacy and awareness-raising ,
training for CDSMP trainers
Organising international
conferences and events
Implementing evidence-based
programmes on chronic disease self-
management (based on Stanford model)
ENOPE – European Network for Patient Empowerment
An informal network of like-minded organisations promoting patient empowerment through evidence-based programmes and innovative action
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Designing care around patient needs
Patient = Expert
Patient Experience ≠
patient satisfaction
surveys
Involve patients
throughout the
policy cycle
Involve POs at
provider AND policy
level
EPF: Value + model to facilitate patient
involvement
Patient involvement is
key to developing
services so they really meet the needs of (all)
patients
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Patient-centred innovation
Innovation that is important for patients
• Priority-setting for research Better alignment of innovation with real needs
Need to involve patient throughout the innovation chain
Co-design research/patient-centred clinical trials, pricing and reimbursement decisions…
• Better quality research results
• Strengthened trust and acceptance of research
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Patient involvement in regulation
"patient groups … have helped to provide valuable insights”
“Engaging with these stakeholders gives the
Agency and the public more confidence and reassurance
in its outcomes.”*
* European medicines agency: Fifth report on the interaction with patients' and consumers' organisations (2011) published in 19 September 2012.
since 2005
Patients & Consumers’ Working Party (PCWP) 34 POs
Full members of MB, COMP, PDCO, CAT and PRAC
Pilot phase: Observers at CHMPAssessment of EPARs, PIL, safety information, scientific advice, protocol assistance…
� Patients at all capacity levels� “Level the ground” support
system
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Patient Involvement in HTA
WHY? Because patients are concerned with the impact new health technologies have on their lives
Experts
PayersPatients
What do patients ask for?
• Involvement, Transparency, Accountability to trust HTA
• More informed decision: Patients can tell how the technology better fits into their daily lives
• Consideration of quality of life and extra-clinical benefits
EUNEHTA
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WP7 Diabetes: a case study on strengthening health care for people with chronic diseases.
An example of policy action at European
levelthe EPF Campaign on Patient Empowerment
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• Why? To promote a common understanding and
call for an EU strategy on Patient Empowerment
• Who? EU health Stakeholders & decision-makers
• When?
– May 2015: major launch conference
– November 2015: development of a Roadmap &
Charter to advocate at the EP
– June 2016: Exhibition at the European Parliament
Campaign on Patient Empowerment
One-year patient-led campaign
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Campaign on Patient Empowerment
→ Patients prescribe E5 for Better Health Systems!
• EDUCATION
• EXPERTISE
• EQUALITY
• EXPERIENCE
• ENGAGEMENT
Campaign messages
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• Show your support to the campaign
• Spread the word!
• Share good practices
• Share your testimonial
www.eu-patient.eu/campaign/PatientsprescribE/
Campaign on Patient Empowerment
Want to get involved?
#PatientsprescribE
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The Joint Action on Chronic Diseases and Promoting Healthy Ageing across the Life Cycle (JA-CHRODIS)*
* This presentation arises from the Joint Actionaddressing chronic diseases and healthy ageing acrossthe life cycle (JA-CHRODIS), which has received fundingfrom the European Union, under the framework of theHealth Programme (2008-2013).