1. Could you please briefly introduce NAPO to our readers?
The National Association of Patients Organizations (NAPO) brings together patient organizations focused on all types of chronic diseases and disabilities operating in the Czech Republic. NAPO's mission is to promote the collective interests of patients, regardless of specific diagnosis, and to provide support to its member organizations. Apart from this role, it also focuses primarily on advocacy and awareness-raising activities. Our goal is to address expert patient topics, express the expectations of patients themselves, and at the same time to become a respected stakeholder partner. NAPO represents the power of patients which elaborates, moves forward and finalizes prepared initiatives in the fields of health and health-social, in collaboration with other stakeholders.
2. What patient priorities does NAPO aim for?
Although NAPO was only established at the beginning of 2022, it has identified several priority areas for this year. We regard the need to digitalize healthcare as very significant, and we call for a secure and user-friendly system, as well as strengthening patients' rights to ownership of their health data.
An important goal of NAPO is to strengthen the role of patient organizations and their involvement in healthcare decision-making processes in line with the principle of "nothing about us, the patients, without us". Closely linked to this is ensuring the sustainability of the activities of patient organizations, particularly in the areas of funding, professionalization and boosting professional capacity.
We also address the issue of the right to be forgotten. We advocate that selected patients who have undergone cancer treatment or have been compensated for chronic illness should be regarded as healthy when they take out life insurance or other financial services. We are also involved in discussions regarding the remote dispensing of medicines and, with the outbreak of war in Ukraine, assistance to Ukrainian patients who are under temporary protection on Czech territory. NAPO cooperates with the Ministry of Health of the Czech Republic and WHO in coordination activities.
3. How is NAPO involved in promoting the interests of Czech patients at the national and international levels?
NAPO promotes the interests of patients in the priority areas mentioned above. We operate at a systemic level and participate in the activities of various councils, committees and roundtables, presenting patients' positions to stakeholders and advocating for a better position of patients within the healthcare system. On behalf of the patient segment, we have participated in a series of roundtables on Digital Medicine (not only) for Patients, we are part of the Patient Council Working group for systemic financing of patient organizations and the Expert Group on systemic change of financing of public services and activities from the state budget.
At the international level, NAPO has become a member of two important organizations – European Patients' Forum and Patient Access Partnership – both of which defend the interests of patients from EU countries. This has given us a unique opportunity to network with other European umbrella organizations and to access important information through participation in international webinars and conferences. At the same time, in cooperation with the European organizations mentioned above, we have managed to organize an international expert conference under the auspices of the Office of the Government of the Czech Republic on the topic of "Involving Patient Organizations in Decision-Making Processes", which was perceived very positively abroad.
4. How do you perceive the current role of patient organizations in the Czech Republic?
Patient organizations are the "voice of patients", they defend their interests and are respected partners in relation to the state. They play an irreplaceable role not only towards patients, doctors, the Ministry of Health and other public institutions but also towards the general public, acting as a means to spread public awareness and prevention. They are experienced partners that provide support, expert advice and their own lived experience to patients when they have to face an unexpected diagnosis.
And yet, patient organizations themselves have to fight for survival every year. Seeking sponsors, applying for grants and hoping to cover the costs of operations and activities. People involved often work on a voluntary basis, in the evenings or over weekends, alongside their civic jobs. This is why I see a clear need to make society more aware of the irreplaceable role that patient organizations have (after all, everyone is or will be a patient) and to set up a sustainable funding system in cooperation with stakeholders.
5. And one more question – would you like to say something to our HAE Junior patient community?
We are truly pleased that we found an experienced new member in your organization HAE Junior and we look forward to collaborating with you in the future.
Tímea Piskáčková is the Executive Director of the National Association of Patient Organizations, z.s. (NAPO), which represents organizations that advocate for the collective interests of Czech patients across diagnoses. From her director position, she is actively involved in cooperation with European Patients' Forum and Patient Access Partnership. She is also a member of the Expert Group on systemic change of financing of public services and activities from the state budget.