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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.
Summary of project results
The aim of the project was to establish an umbrella organisation of patient organisations operating in the Czech Republic - the National Association of Patient Organisations (NAPO). Before the launch, there was no similar organisation in the Czech Republic and thus no systemic involvement of patients across therapeutic groups in the formulation of health and follow-up policies. As part of the project implementation, NAPO was established, technically and materially equipped, staffed and financially secured to operate after the end of the project. At the same time, NAPO was able to profile itself during the project implementation as a natural first point of reference for the Ministry of Health, the State Office for Drug Control, the State Institute of Health and other organisations and institutions focused on health promotion that seek or consult patients'' opinions. During the implementation of the project, we did not encounter any significant challenges/issues that would jeopardize the successful implementation of the project. From the grantee''s perspective, the project met all expectations.
The project had three main activities - the establishment and organisation of NAPO, the development of the newly established NAPO and patient advocacy activities. The main outputs of the first activity were the establishment of NAPO, the registration of NAPO in the NGO Register, the recruitment of two employees, the provision of an office and its basic equipment, as well as external services related to the operation of NAPO (accounting and HR services, IT support, PR and fundraising services). In the second activity, the membership base was repeatedly expanded after the inaugural membership meeting, and by the end of the project implementation it already had 47 members, through which NAPO represents 130+ patient organisations. Based on the interactive strategic planning process, NAPO''s strategic plan, five internal working groups were created (Medicines, Quality and Availability of Healthcare; Prevention and Health Literacy; Capacity Building; Health Policies and Patients Participation in Decision-making; Digital Health), NAPO launched a website (www.silapacientu.cz), established social media profiles (X, Facebook), and sends a monthly newsletter to members. The main outputs of the third activity included advocacy activities - NAPO launched legislative monitoring for its members and prepared several position papers defining the patient position on current health topics (e.g. telemedicine / e-health, emergent and mail order prescription drug dispensing, right to be forgotten, involvement of patient organisations in decision-making processes in health care, systemic financing of patient organisations). The Association has become a member of the European Patients'' Forum (EPF), a network of European patient organisations, and is actively involved in the work of EPF working groups. NAPO also organized two annual Patient Forum conferences (2022 and 2023), held five roundtables, and participated in a number of meetings with government agencies. The project was also continuously publicized, with two major outreach publicity events and repeated media releases mentioning the role of EHP funds.
The purpose of the project – the creation of an umbrella patient organisation and more effective representation of patients'' interests - was fully achieved. The target output of the project as defined in the project application was the establishment of an umbrella patient organisation, which will bring together a significant part of patient organisations registered in the database of patient organisations of the Ministry of Health of the Czech Republic (currently about 150 organisations). NAPO had 47 members at the end of the project implementation, some of which are themselves umbrella organisations for selected diagnoses (e.g. rare or oncological diseases); in total NAPO represents 130+ patient organisations in more than 35 therapeutic groups. NAPO enables end users (members of the association) to engage more effectively in advocacy activities to improve the position of patients in the Czech Republic. Through NAPO, member organisations are now e.g. involved in the work of working groups at the Ministry of Health and the Office of the Government of the Czech Republic, have access to legislative monitoring, foreign information (e.g. from the EPF or the European Medicines Agency EMA) or international patient networks (e.g. in the framework of the project on crossborder patient involvement in clinical trials). NAPO has already become a natural first point of reference for the Ministry of Health of the Czech Republic, the State Office for Drug Control, the State Institute of Health and other organisations and institutions focused on health promotion that seek or consult patients'' opinions.
Summary of bilateral results
The cooperation with the Norwegian partner, with whom we continuously consulted on our activities, was also important for the project. The involvement of the Norwegian umbrella patient organization (FFO) was crucial for the transfer of know-how and examples of good practice in three areas – the establishment, development and building of professional capacities of the Czech umbrella organization (NAPO); advocacy activities and patient involvement in decision-making processes in healthcare through the umbrella patient organization; and the development of services for NAPO members. Most of the Norwegian experience was transferable, although in some areas (e.g. financing of the patient organization) the broader national framework was so different that the Norwegian example could not be directly used. Overall, however, we greatly appreciate the involvement of the Norwegian partner in the project.