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The establishment and development of the National Association of Patient Organizations (NAPO) is funded by the EEA Grants2014–2021 under the Health Program.
The purpose of the project is to strengthen the role of patients and the position of patient organizations in the health sector by establishing an umbrella patient organization with a sufficiently representative membership base to represent the interests of patients across diagnostic groups and to develop the patient organization segment. An umbrella patient organization is a grassroots initiative of patient organizations themselves, which meet the definition of a patient organization – in particular, the condition of leadership or majority participation in the leadership and management of the organization by patients themselves. The basic principles of NAPO’s organization and activities are transparency, legitimacy, democracy, representativeness, and accountability.
The main outputs of the project are the establishment of NAPO, the establishment of its headquarters, and the operation of the organization; the expansion of the membership base; the establishment of the main information and communication platforms; information service for patient organizations (e.g., the establishment of the EUPATI national reference point) and activities to strengthen the capacity of individual patient organizations.
The preparation for the establishment and development of NAPO was ensured by eleven organizations associated in the NAPO Preparatory Committee, which emerged from consultations with all patient organizations in November 2020. The constitutive meeting was held on 17 November 2021, and the registered association was established in February 2022 by registration in the Federal Register. Preliminary interest in NAPO membership was expressed by 69 patient organizations, with whom the preparatory committee was in continuous contact.
The foreign partner organization is Funksjonshemmedes Fellesorganisasjon(FFO) – the Norwegian umbrella organization representing 70% of all patient organizations in the country. It operates nationwide, representing both purely patient organizations and organizations, and associations of disabled people. FFO’s main focus is advocacy activities and services for member organizations (capacity building, legal services, joint advocacy work). FFO is a member of the European network of patient organizations EPF.
For NAPO, the cooperation of the EPFO means the possibility of transferring know-how and examples of good practice in three areas – the establishment, development, and professional capacity building of the umbrella organization; advocacy activities and involvement of patients in decision-making processes in the health sector through the umbrella organization; and the development of services for members of the umbrella patient organization. The NAPO Steering Committee has been in informal contact with the SFO since March 2021.
February 2022
NAPO registered in the Federal Register
Director, project manager recruited
Memorandum of Cooperation with AIFP signed
Website launched
March 2022
Help for Ukraine incl. an online meeting of patient organizations to share experience and information (in cooperation with the Dept. of Patient Rights Support, the Ministry of Health)
Participation in a round table on telemedicine in the Senate
Recruiting new patient organizations
Advocacy forum concerning sustainable financial support for patient organizations
April 2022
An online meeting of patient organizations focused on help for Ukrainian patients (in cooperation with the Ministry of Labour and Social Issues)
EPF Memberhip
Partnership with PACT
May 2022
Online meeting with FFO (Norwegian patient organization, a NAPO partner)
NAPO Member Board Meeting – admission of 11 new members
Participation at the patient Hub conference on sustainable funding of patient organizations (key note, panel discussion)
NAPO breakfast with the media
A meeting with the Association of Pharmacy Chains about remote dispensing of medicines
Online meeting of NAPO members to discuss sustainable funding of patient organizations
June 2022
A meeting with the Head of the Ombudsman in Healthcare Association
Negotiations with EFPIA about a partnership of the CEE Patient Engagement Annual Forum 2022
A start of preparations of the NAPO conference at the occasion of the Czech presidency of the Council of the EU
A meeting with Josef Pavlovic, the Deputy Minister of Health
Signing a memorandum of cooperation with the State Istitute for Drug Control
Participation at the EPF Confress, Brussels
The second meeting of NAPO member organizations abou sustainable funding of patient organizations
July 2022
NAPO conference – preparations, registrations
Online meeting focused on Lex Ukrajina II
August 2022
NAPO conference – preparations
A meeting with ČAP a ČAFF concerning the right to be forgotten
A meeting with the Czech National Disability Council
A meeting with Radek Policar, the Deputy Minister of Health for legislation and law
Sustainable funding of patient organizations – discussion about NAPO draft with non-member patient organizations
A meeting of the Patient Council working group focused on sustainable funding of patient organizations – introduction of the NAPO draft
Participation at the APO summer school
September 2022
International NAPO conference at the occassion of the Czech presidency of the Council of the EU
A meeting with the Association od manufacturers and Suppliers of Medical Devices
Negotiations with WHO about opening a position of a Patient Community Coordinator for Ukraine
Participation at a kick off meeting regarding opening a Czech EUPATI platform
The second NAPO Member Board meeting – admission of 13 new members
October 2022
Organization of a round table on telemedicine – law, reimbursement and technological aspects
Participation at the UNHCR inter-agency workshop – Refugee Response Plan for Ukraine
A fundraiser recruited, a fundraising strategy created
Advertising of a new position – Patient Community Coordinator, in cooperation with WHO and the Czech Ministry of Health.
November 2022
Participation in the Fundraising Mini School at the Patient Hub
Participation in a discussion panel at “EHDS as an effective tool for improving healthcare in the EU” conference
Participation at the “Digital medicine (not only) for patients” conference. Previous year at this conference we presented a document with 10 rules for telemedicine from the patients’ perspective.
First meeting of the Expert group for systemic change of funding of NGOs created by the Government Council for NGOs at the Government Office. NAPO is a member of the group.
NAPO strategic planning
A meeting with the Psychosomatic Medicine Society
December 2022
Participation at APO Alumni VII
A meeting with V. Finsterle, a representative of Lekarna.cz, exploring patients’ needs towards pharmacists
A lecture by A. Tichopád (CzechHTA, Faculty of Biomedicine Engineering, Czech technical University) about HTA
A regular meeting with the Dept. for Support of Patients’ Rights, Ministry of Health
NAPO concert for member organizations and partners in the Jerusalem synagogue
January 2023
A meeting with the Czech Parmacist Chamber to discuss vaccination in pharmacies, emergency dispensing of medicines etc.
Graduation in the Fundraising Minischool (Pacient Hub)
WHO A Year in Review – a meeting at the Residence of the Mayor of Prague at the opportunity of inauguration of the new WHO CZ Director
Opening negotiations with the Ministry of Health regarding a trasfer of the Patient Hub
NAPO strategic planning, 2nd part
Online consultation with our partner patient organization FFO, Norway
Audit of our project conducted by the Ministry of Health
February 2023
Participation at the intense course “Involving patients in HTA processes” organized by the Dept. of Patient Rights Support at the Ministry of Health and APO.
Conclusion of a series of consultations within the Advocacy Forum
Kick off meeting with EY concerning the analysis of financial benefits of patient organizations
Meeting of the project management with working groups guarantors – setting up of work flow and rulese
Lecture by RNDr. Marian Rybář on evaluation of the quality of healthcare
March 2023
Participation at a lecture on AI in healthcare by Carebot
A meeting concerning further cooperation with SYRI National Institute
Negotiations about cooperation of NAPO with the Ministry of Health on education of students of medicine
Screening of the Intense Life Unit documentary follwed by a discussion with a specialist in paliative medicine MUDr. Ondřej Kopecký
Signing a contract with WHO for “Supporting Ukrainian refugees
with access to health and social services” project implemented by NAPO
Participation at AI bootcamp Data Saves Lives in Lisbon
Participation of two NAPO representatives in the first series of EUPATI online course
April 2023
NAPO Member Board Meeting – a number of members rising to 42
Participation of NAPO at the Social Services Law Working Group (3/4)
The European Patients’ Rights Day information campaign (18/4)
Webinar by the Society for Psychosomatic Medicine ČLS JEP
NAPO joining the Zdravotnictví 2030+ initiative
A meeting at the Ministry of Health concerning opening a position of a coordinator for UA patients transports (26/4)
Participation of NAPO in thematic subgroups (multi-year funding and umbrella organizations) in the Expert group for systemic change of funding of NGOs at the Government Office.
EPF Annual Conference – NAPO became a full member
A coordinator of Support for UA Patients Project – onboarding, preparation of a survey
May 2023
2.5. Participation at the meeting of the work group for sustainable funding of patient organizations of the Minister of Health’s Patient Council
18.5. Round table discussing sustainable funding of patient organizations, the Ministry of Health
10.5. Webinar on EHDS organized by the NAPO work group for digital medicine
12.5. Meeting with the Czech Chamber of Pharmacists on emergency disposal of medicines
30.5. Medic Café – presentation of educational programme for medicine students focused on work of patient organizations (starting autumn 2023)
31.5. Submission of the analysis of health and social system literacy among UA refugees in CZ, WHO project
June 2023
Meeting with the Czech Medical Association of J. E. Purkyně
Memorandum of cooperation with the Military University Hospital Prague signed, an intent to establish a Patient Council
Memorandum of cooperation with the Association of Ombudsmen in Healthcare
Meeting with the Ministry of Labour and Social Issues – establishing regular meeting, a plan to establish a platform
A participation at a meeting discussing the sustainability of the Patient Hub project with the Ministry of Finance and the Ministry of Health
NAPO representative taking part in national EUPATI training module
14.6. Participation at the Prague 13 Health Day
30.6. Submission of the analysis of needs of UA patiens transfered to Czech hospitals, WHO project
Fundraising campaign – NAPO pronounced a NGO of the month in Café Nezisk
July 2023
Patient Forum 2023 – start of preparations, dissemination of Save the Date
WHO project – a meeting with WHO and the Ministry of Health to evaluate submitted analyses, continuation in UA patients case management
Survey of attitudes of patients and doctors towards preventive check-ups done by NAPO and Ministr zdraví – publication of results
Negotiations with the Patient Hub regarding take-over of their selected activities
Recruitment of a new NAPO director
August 2023
Conclusion of the selection procedure for the position of NAPO Executive Director
Preparations for the Patient Forum 2023 conference – registration open
Signing of the Memorandum of Cooperation with Active Citizenship Network
Finalisation of negotiations with the Patient Hub, agreement to produce a video on the activities of patient organisations
Negotiations with the Ministry of Finance and the Ministry of Health concerning a grant to finance the bilateral initiative EEA and Norway Grants 2014-2021 – an international conference to share good practice of patient organisations and cooperation with Norwegian partners
Participation in the APO Summer School on the regulation of promotion of medicinal products
September 2023
Cooperation with the Czech Professional Society of Clinical Pharmacy established
Negotiations with the Prague University of Economics and Business regarding participation of NAPO in the project of financial protection of households with chronic patients within the Jan Ámos Komenský Operational Programme (OP JAK)
Participation in the Active Citizenship Network webinar on the benefits of vaccination, participation in the campaign on social media
Completion of the WHO project to improve access to medical care for Ukrainian refugees in the Czech Republic, participation in the WHO foreign mission consultation with Czech NGOs
Launch of a questionnaire on the attitude of patient organisations towards partnerships with pharmaceutical companies
Preparation of the NAPO Patients’ Forum Conference
October 2023
Participation at 2024 Refugee Response Planning – WHO strategic planning workshopu on Ukrainian refugees
Meeting of EEA project implementers from patient organizations in the Patient Hub
Lifmat conference under the auspices of NAPO
First meeting of the newly established working group for Patients’ Rights at the MoH
Patient Forum 2023 – NAPO annual conference
Signing of the Memorandum of Mutual Cooperation with the Czech Medical Society of J. E. Purkyně
November 2023
Participation in the roundtable on Nonprofits and the Legislative
Process in the Chamber of Deputies of the Czech Republic
Participation in the Patient Hub conference
High Level Forum meeting (AIFP, Pfizer, Novonordisk)
Participation in EPF Member Cicrle: Youth Involvement in Patient Organisations
Publication of an awareness raising video on patient organisations
NAPO pre-Christmas meeting with partners and patient organizations: Concert for good souls
Presentations by E. Müllerová and V. Milata at the conference Digital Medicine (not only) for Patients