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Description
The aim of the project is the establishment and development of an organization that will cover and coordinate the common interests of organizations currently operating for the benefit of people with diabetes in the Czech Republic - Alliance of Diabetes Patients of the Czech Republic (APDČR). A similar umbrella organization with the joint involvement of patients with diabetes (DM) of all types and ages and a complete range of activities needed for effective patient advocacy, the formulation of health and follow-up policies is still lacking in the Czech Republic. Due to the current state of membership bases of most potential member organizations, it is not possible for their management to expand the current limited offer of activities. APDČR will help and provide individual member organizations with the necessary and beneficial activities. It will employ professionals in the given areas in order to be a partner of providers and payers of health care, to ensure effective patient advocacy and systemic participation of patients in legislative processes. It will implement contact with the state administration, control the quality of health services and mediate public control of the system more effectively than individual member organizations can without knowledge-based personnel capacities. A similar role of umbrella umbrella organizations is envisaged, for example, by the strategic document Health 2030, or the State Policy towards NGOs in 2015-2020. The APDCR project PO (especially the condition of leadership or a majority stake in the leadership and management of the organization patients). The basic principles of the organization and activities of the APDCR will be transparency, legitimacy, democracy, representativeness and accountability.
Summary of project results
The Alliance of Patients with Diabetes of the Czech Republic was established based on a social need. The unification of organizations associating patients with diabetes was necessary to address common priorities. In particular, patient advocacy - ensuring the availability and economic sustainability of reimbursements, medical products and medical devices. Broader representation of organizations in negotiating conditions with payers and healthcare providers, state and educational institutions, and professional societies. Neither an individual nor any current patient organization working with diabetics can adequately cover all topics and participate in all necessary processes. The goal was to create a functional structure that would test its possibilities for involvement during the support period, coordinate activities in processes where individual organizations already have representation, and expand its advocacy activities to other areas. It also created a structure to implement educational activities and improve patient literacy. Joint creation of tools and communication for alerting competent authorities (MZČR, SUKL and ZP) to deficiencies in care and risks of negative impact on diabetes treatment. During the implementation, we were rejected by other potential members who mainly deal with technical support and alternative methods of using medical devices for the treatment of type 1 DM for a narrow group of patients (the organization DIAKOBRAZ, z.s.). Other organizations that could join the APD are themselves struggling with their own personnel existence (lack of personnel capacities). Many have become convinced that the umbrella organization is meaningless for them and our capacities, which were busy with the implementation of the project, have not been able to expand so that we would be able to devote ourselves to more intensive negotiations and persuasion and fulfill one of the project indicators (expansion with other members from among the organizations). The organization PACIMED p.s. VŠTJ Medicína Praha, z.s., even after more than 12 months of work on becoming independent, failed to fulfill the condition within the project deadline. Membership is conditional and will be full after fulfilling the condition of registration as an independent association. For the Diabetes Museum, with which we closely cooperate, it was not possible to secure the conditions (premises and financing) to establish it as an independent entity (legal entity). Negotiations on the entry of the DIAPOZITIV association failed due to insufficient time and personnel capacity of the association''s volunteers. The biggest challenge is changing the mindset of potential members and finding a better marketing strategy to motivate individual members, whom the original project did not count on.
We have involved all organizations that cover some part of the activities that patients currently cannot do without, and the health system does not have the capacity to provide these activities. For patients with diabetes, these are mainly activities for the membership base (various forms of education with a measurable effect for patients and partners in care) and activities outside the organization (patient advocacy and cooperation to optimize the conditions for effective treatment) and especially meaningful involvement in the process of improving patient literacy. We provided a service to ensure education for the current membership base of one of the project partners, we actively participated in the systematic education of implementers of rehabilitation stays with a health program. We have ensured a system for processing documents for the territorial organizations of the Association of Diabetics, including support from grant calls of the Ministry of Health of the Czech Republic. We have ensured a functional system for sharing work and processes and divided the competencies and areas of activity so that the activities of individual organizations complement each other and are accessible to the current membership base of all partner organizations. We have created conditions for a functional dialogue between individual entities that can influence diabetes treatment and its reimbursement. We have organized an annual round table and then competent representatives have worked intensively to fulfill the agreed tasks accepted on our side. We have managed to equip premises for meetings, of an advocacy and educational nature, communication channels - telephones and email addresses, information channels - website and Facebook profile. We have started publishing a newsletter drawing attention to essential information published on the website and current news of fundamental importance. The financial support of the project has enabled us to professionally process materials from the public space not only in the Czech Republic but also abroad, for the education of people with diabetes and the development of a promotion plan and the implementation of promotional activities. We have prepared conditions for the entry of individual members for whom membership in one of the existing founding organizations is unfeasible for various reasons and who could help to secure the organization''s own financing within a few years.
A joint patient organization was established and a structure was built for communication between partners and communication with the future individual membership base (websites and Facebook profile). For the individual founding and partner organizations and entities, the project is important primarily in gaining capacities for assistance in the area of advocacy. The round tables organized gradually met with increasing interest from institutions in a dialogue that individuals or, possibly, current partners could not achieve independently due to capacity reasons. Joint communication of needs and activities of societal interest proved to be very beneficial for all participants and also for the broad patient public. The perception and view of patients with diabetes in the public space has changed significantly. Communication with payers of care and cooperation on preventive programs have gained intensity with the establishment of the Alliance. We have expanded the educational programs to include online educational cycles thanks to our partner PACIMED, which is waiting for confirmation of independence in order to become a full member. The Alliance has thus gained additional activities for intensive education and is also participating in securing project financial support. Several dozen educational webinars were implemented with a very positive response from the professional community. During the project, our educators made dozens of presentations for more than 1,300 patients with diabetes in the partner''s branch associations and the general public at public events. Educational lectures were mainly focused on topics improving patient literacy and compliance in diabetes treatment. Our activities were presented in the form of a poster and a presentation in the poster section at the professional national congress and also at the international level, at the World Congress of the International Diabetes Federation in Portugal 2022. We are intensively involved in building a diabetes museum and, above all, in promoting the history of treatment that it presents. We use the museum''s collections to educate and motivate patients and spread awareness about diabetes across the general public and the professional public. The project enabled the largest partner (the Association of Diabetics of the Czech Republic) to ensure the quality of education for rehabilitation stays and education of the membership base and education of volunteers to ensure the necessary administrative activities of the branch associations needed to ensure activities and financing from local sources. The Alliance helped with the promotion and structure of the program and providing lecturers for the Conference for healthcare professionals organized by the partner Hope for Everyone and other events focused on patients and the public, which were implemented together by the partners DIAKTIV Czech Republic and DIAKAR. In particular, the Educational and Motivational Project, the Šimurda Days of Diabetics Congress and Health Days in several locations in the Karlovy Vary Region.