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Kaisa Immonen-Charalambous Senior Policy Adviser, European Patients’ Forum . The Belgian strategic plan for implementing healthcare innovations for chronic diseases “Patient engagement and empowerment” 2 April 2014. VISION : All patients with chronic and/or lifelong
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Senior Policy Adviser, European Patients’ Forum
The Belgian strategic plan for implementing healthcare innovations for chronic diseases
“Patient engagement and empowerment”
2 April 2014
conditions have access to high quality, patient-
centred, equitable health and social care.
MISSION: to ensure that the patient community
drives policies and programmes that affect
patients’ lives to bring changes empowering them
to be equal citizens in the EU
62 member organisations; non-disease specific – issues that are important for all patients
The patient’s role is undergoing a transformation : from passive recipient to active and equal partner
… BUT do we see in the same way?
… How to achieve it?
Impact of illness is multiple and compounded: physical, psychological, emotional, social, financial.
Chronic disease is often a direct cause of health inequalities for patients and their families
Hospital & health system
Social insurance system
“Patients’ perspective on chronic diseases is unique: patients live with their disease, learn to manage it, and to navigate the health system to get the right care. In addition, chronic diseases impact many areas of patients’ lives, including workplace, family and social interactions.
This is why we believe patients play a key role in identifying service needs and ensuring that strategies to address chronic disease are effective in fostering high quality and sustainability of healthcare, and improved quality of life.”
- EPF response to EC consultation on the Chronic Disease Reflection Process, May 2012
Patient = “person with a set of needs, along different dimensions, in more or less complex and individually specific combination, which are prolonged or permanent and evolve over time.”
Care close to community – in the least “medicalised” environment that is appropriate
Comments on specific gaps and concerns …
Self-empowerment: “patients accept responsibility to manage their own conditions and are encouraged to solve their own problems with information, not orders, from professionals.”
From paternalistic model (doctor makes the decisions) "autonomous“ model (patient makes the decisions, doctor provides information).
“Responsibility” is problematic considering power balance between patients and system
EPF: shared/collaborative decision-making (a partnership)
Patient empowerment = a process that helps patients gain control over their lives, increasing their capacity to act on issues that they themselves define as important; a process through which patients individually and collectively are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and take action to meet those needs. (Adapted from JA-PaSQ, 2012)
Need for a comprehensive information strategy – within and outside health system
“MUSHROOMS BEAT CANCER”
(Headline, Daily Mail)
even for people with high education
“Patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated as to its outcomes, impact and the process itself, according to the values and purposes of all participants.” (Adapted from EPF project “Value+”, 2009)
Patients with chronic diseases have common needs: empowerment, information, navigation, care coordination, access, encounters with health professionals and bureaucracy…
Patient-centredness as dimension of Quality of Care