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Description
The main project aim is establishment and development of an umbrella organization of patient organizations - the National Association of Patient Organizations (NAPO). A similar umbrella organisation facilitating systemic involvement of patients across diagnostic groups in the formulation of health policies is still missing in Czechia. Today, patients provide information on the impact of health policies on the lives of people living with chronic diseases through patient organisations (POs) established mainly for particular diagnostic groups. An umbrella PO will mediate this systemic patient participation, "user testing" and quality control of health policy measures, and public control of the system more effectively than individual POs can. A similar role of the umbrella PO is foreseen, e.g. in the strategic documents Health 2030 or State Policy towards NGOs.
The NAPO project is in line with the criteria defining a legitimate and sustainable umbrella NGO. It is a grassroots initiative of POs who meet the definition of a PO (in particular the condition of direct or majority participation of patients in the management of the organisation). Transparency, legitimacy, democracy, representativeness and accountability will be the basic principles of NAPO''s internal organisation.
The main outputs of the project will be the establishment of NAPO, its headquarters and operation, expansion of the membership base, establishment of the main information and communication platforms (website, social networks), information services for POs (e.g. creation of a national EUPATI reference point) and activities leading to PO capacity building.
The preparation for the establishment and development of the umbrella PO is being carried out by 11 POs organized in NAPO Preparatory Committee, which emerged from consultations with all patient organisations in November 2020. 69 POs have so far expressed their support for the project and preliminary interest in becoming members of NAPO.