Best practices on Chronic Patients and Organizations’ Empowerment

ACN is looking for Best Practices! The most significant will be published and showed during the next European Patients’ Rights Day (12-13 May Brussels)

Participate with your experience! FILL IN THE FORM BY the 30th of MARCH

As mentioned in the Health WP 2013: “Patient empowerment is a core value of a modern patient-centred health system as advocated by the Council conclusions on common values and principles in European Union health systems (2006/C 146/01). However, the concept of patient empowerment is not clear, and patient empowerment is often perceived only as the use of eHealth tools. There are also concerns that an empowered patient may represent an increased cost for the health system.”

While the participation is essential to promote a patient-centered healthcare, this is even more necessary dealing with chronic diseases, including chronic pain. The development of personalized drugs and treatments, which bring up cost issues but have been proved to be more effective to manage chronic diseases, make this participation essential to find the best balance between the interest of patients and the sustainability of healthcare systems.
The essential role of citizens’ organisations in the empowerment of individual patients with chronic diseases and their families is often underestimated.
Patients with chronic diseases do not only have to cope with the medical aspects of their condition, but also with the social, relational and psychological impacts of their disease, which often have as much weight as the disease itself on the quality of their lives.
The added-value of citizens’ organisations consists in a global approach to patient empowerment, supporting, informing and training patients to help them face the many difficulties of their daily lives. This global approach is necessary to make patients strong enough to collaborate with their doctors on an equal footing, helping them personalize the care, participating actively in the management of their disease, and using health services more effectively.
There is also a general concern about the increased costs that shall derive from the pressure exercised by associations of patient with chronic diseases on health institutions, because their main objective is supposed to be increased access to and better reimbursement of innovative and expensive treatments and drugs, but they play a decisive role in the development of a modern patient-centred health system.
Therefore, the empowerment of patient organizations should be considered as an added value, because they become actual partners in the health policy, sharing with the institutions the responsibility of finding the best balance between the interest of patients and the sustainability of the system. This is achieved through the creation of networks and alliances, which allow the identification of common objectives and goals. This includes the development of a global and long-term perspective, which goes beyond the single chronic diseases and reflects the general interest of patients.

Patient empowerment does therefore have two different but complementary dimensions:
1. Improvement of a person’s capabilities to effectively self-manage his/her chronic disease;
2. Enhancement of patient groups’ capacities to participate efficiently in health policies.  
In both cases, citizens’ organisations – which include self-help groups, associations of patients with a chronic disease, networks and umbrella organisations - play an essential role. Patients’ organisations educate and support individual patients and their families, while networks and umbrella organisations contribute to build their capacities to participate in the policy-making. 

Participate with your experience! FILL IN THE FORM BY the 30th of MARCH

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