Ms. Slabá, could you please briefly introduce our readers to the activities of the Promotion of Patients ‘Rights Unit (OPP) within the Ministry of Health?
The main objective of our department is to involve the patient community in healthcare processes. Patients are those who use the services of the healthcare system. It is therefore absolutely legitimate and desirable for them to have the opportunity to comment on the upcoming changes in healthcare, come up with their own proposals or point out problems they encounter.
Unfortunately, we know that it is not enough to create the possibility of involvement in processes, so OPP tries to ensure that the system listens to patients' voices, organizations use the possibilities of participation, that they have time and money to participate and, last but not least, that they are able to actively participate in decision-making in health issues, and thus be an equal partner to other actors.
OPP now educates organizations of the patient community through the Patient hub project both in matters of functioning and leadership of the organization, as well as in expert topics. We also address the issue of the financing of patient organisations.
In addition to the above, we are currently working on a methodology for handling complaints using the institute of the hospital ombudsman.
What are the main projects of OPP for patient organizations in the Czech Republic?
Although we are a department of the Ministry of Health, we have also created and are now implementing the Patient hub project within the EEA and Norway Grants. It is a unique concept of a physical site and at the same time an online platform that focuses on the development and education of patient organizations. The Patient hub hosts seminars, lectures and other educational events specifically designed for patient segment organizations, as well as events for the general public. The web platform contains recordings of events and creates a virtual library for use when a particular organization needs them for its further development. It also includes e-learning modules with practical information, for example, on how to lead an organization, how to support the organization's activities with quality advocacy or how to fundraise.
The Patient hub also serves as a meeting space. The premises can be used by patient organizations for their activities free of charge.
We are glad that the Patient hub contributes not only to greater orientation in systemic and professional topics, but that it has become a place for sharing good practice among organizations. Since we are in the last year of the project, we certainly call for the greatest possible use of the services offered by the hub and which you can find on its website: www.pacientskyhub.cz. We are happy to welcome other organizations – their members and volunteers.
Within the EEA and Norway Grants, we also tried to secure multi-year funding for the projects of patient organizations through a grant scheme that aimed to support their professionalization – the possibility of having paid staff. Part of the challenge was also support for the establishment of umbrella organizations, which we perceive as very important for the further development of the patient segment.
The implementation of these projects ends at the turn of 2024, and although as always the grants are burdened with administration, we believe that the projects have helped organizations to start or support their further development. And although it is not a project in the true sense, we have also created and maintained a database of patient organizations, which we publish on our website. The database differs from the official List of Patient Organizations in that it lists patient segment organizations only based on their request, without having to meet any special criteria set by law. For example, a database can be a good guide for patients on how to find the right organisation. On the other hand, organizations have the opportunity to make themselves visible and become known to patients and the general public. On the pacientskeorganizace.mzcr.cz website you will also find information about the Patient Council, working groups, List of Patient Organisations and other news.
Last year, the topic of rare diseases became one of the priorities of the Ministry of Health during the Czech Presidency of the European Council. How do you evaluate these joint activities from the perspective of the Ministry?
Yes, rare diseases were one of the fundamental priorities of the Czech Presidency. The most important event and progress in this area was a professional conference held in Prague at the end of October 2022, where the conference participants supported the call for the adoption of the European Rare Disease Action Plan and subsequently this call was supported by 22 EU countries. The Czech Republic has thus managed to move the topic of rare diseases in a fundamental direction. The aim is for all patients in Europe to have equal access to affordable and effective treatment. The creation of an Action Plan will not only help early diagnosis and initiation of treatment but also increase the chances of a full life. The Ministry of Health will try to further develop this topic within the presidencies of other countries (Sweden, Spain).
In the field of rare diseases, cooperation with the Czech Association for Rare Diseases (CAVO), which covers patient organizations for specific rare diseases as well as individual members, has worked very well so far. By the very nature of things, such as the uniqueness, exceptionality and specificity of rare diseases, it is very important for the Ministry of Health to cooperate with those who are often the greatest experts on living with the disease. Close cooperation with experts in this field, who work very closely with patients, is also very valuable. This cooperation has worked well under the Czech Presidency and I believe that this will continue to be the case.
How do you see the future of patient organizations in the Czech Republic? And what does the OPP plan for the next period?
As part of our activities since 2016, we perceive a major shift in the functioning and position of patient organizations. Not only are these organizations providing important services for patients and their loved ones, but they also transfer their experience, for example, to working groups at the Ministry of Health and within advocacy activities to other actors.
Patient organisations are the link between individuals with chronic illness and/or disability on the one hand and the system on the other. They contribute to its improvement through feedback from practical life.
We also see the establishment of the National Association of Patient Organizations (NAPO), which was established as part of the aforementioned call, as a major shift. Patient organisations need to have a body that represents their common interests while developing organisations in line with their needs.
Our department will continue to strive to ensure that there is enough space for systemic patient participation in healthcare, so that patients' voices are listened to and that patients can use these opportunities for involvement. Furthermore, we will educate organizations and support their operations’ sustainability.
Finally, would you like to pass on a message to our HAE Junior patient community?
I would like to thank you for the work you are doing for your members. Thanks to your activity, they are not alone in the new situation – they have somewhere to turn, you mediate important information related to this rare disease, but above all the opportunity to see that a full-fledged life with this disease is possible. The voice of these patients is heard thanks to HAE Junior. On behalf of our unit, we wish you all the best in your future activities, but above all in your life.
Kateřina Slabá is the head of the Promotion of Patients´ Rights Unit of the Ministry of Health, which focuses primarily on patients involvement at the overall system level. She is a member of several different working groups and expert committees in which she promotes the interests of patients.