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Description
The “Patient Hub” project encompasses a comprehensive spectrum of actions undertaken by the National Confederation of Patient Associations in Greece, in order to strengthen their extroversion, effectiveness, administrative autonomy, financial sustainability and cooperation. The patient participation in health is not limited to an individual level, as patients can collectively participate in various levels of decision-making such as health policymaking at national and local level, clinical research, evaluation of health technologies, development of treatment guidelines, awareness campaigns, etc. However, patient representatives have not yet developed the necessary extensive and effective network, as well as the appropriate skills to maximize their impact on health policies and society in general.
In this context, the Patient Hub is a cooperative, supportive and educational network, with the strategic goal of long-term strengthening the ecosystem of the country''s patient associations and serving health democracy.
The project’s initial network consists of 55 patient groups which are members of the Greek Patient Association.
The actions of the project are developed in the following pillars:
- Networking (Collaborative working space, legal and accounting consulting, networking with other social partners, establishment of new associations)
- Training (Continuous capacity building seminars)
- Communication (Joint campaigns, joint newsletter, web presence)
- Scientific Research as a precondition for evidence-based policy proposals
- Policy interventions developed by the Greek Patients Association, as a result of the above pillars
Summary of project results
Τhe Patient Hub is a cooperative, supportive and educational network, with the strategic goal of long-term strengthening the ecosystem of the country''s patient associations and serving health democracy. The Patients’ Hub Network project was initiated to tackle several pressing challenges faced by patient associations and the broader health sector in Greece and in particular:
Fragmentation of Patient Associations:Patient associations operated in isolation, lacking coordinated communication and collaboration. This fragmentation limited their ability to share resources, exchange knowledge, and advocate collectively for policy change.
Limited Advocacy for Patient Rights:
Associations faced difficulties in raising awareness and pushing for systemic reforms to address patients'' needs effectively. The absence of a unified platform hindered their ability to make impactful political and policy interventions.
Gaps in Expertise and Capacity Building:
Patient representatives needed access to specialized knowledge, skills, and training to strengthen their advocacy and operational capacity. A lack of structured educational initiatives left associations ill-equipped to navigate health policy and governance effectively.Challenges in Addressing Cross-Cutting Public Health Issues:
There was a need for collective action to address horizontal issues affecting all patients, such as access to healthcare, funding shortages, and systemic inefficiencies.Limited Integration of Research and Evidence-Based Approaches:
Associations were not sufficiently engaged in research initiatives, limiting their ability to utilize evidence-based data for advocacy and program design.Need for Networking and Partnerships:
Building connections among patient associations, universities, and health experts was necessary to foster innovation and collaboration in the field. By addressing these challenges, the project aimed to create a cohesive and empowered network of patient associations capable of advocating effectively for systemic changes and improved patient care.
The project delivered the following activities and outputs:
- Development of the Patients’ Hub Network:
Brought together 76 patient associations and organizations from the health sector, creating a cohesive network for communication and collaboration. - Thematic Meetings and capacity building activities:
Organized 43 group meetings focused on thematic fields and over 15 meetings dedicated to specific health categories. These meetings, coordinated by members of the Board of Directors of the Hellenic Patients’ Association, provided a platform to discuss key issues, identify shared challenges, and propose solutions. Furthermore, 5 workshops and 28 seminars on networking and health policy with 120 participants from across Greece were implemented - Engagement of Academic Experts:
Involved 23 professors from 8 universities, offering specialized expertise and enriching the program''s content. - Advisory Services and capacity building:
Delivered 36 advisory services to patient associations, providing tailored support to enhance their operations and advocacy strategies. - Research and Public Health Interventions:
Facilitated 48 participations in research projects, enhancing the use of evidence-based approaches. Carried out 50 interventions on horizontal public health issues, advocating for systemic improvements that benefit all patients.
The Patients’ Hub Network project produced significant outcomes and impacts, benefiting patient associations, their members, and the broader health sector in Greece.
Key Outcomes:
1) Creation of a Unified Network: Brought together 76 patient associations and organizations into a collaborative platform, fostering communication, resource sharing, and joint action. The network provided a unified voice for addressing systemic health issues and advocating for policy changes.
2) Strengthened Advocacy and Policy Influence: Enabled the development of proposals and political interventions based on the insights from 43 thematic field meetings and 15 therapeutic category meetings. Contributed to actionable changes in public health policy, addressing key concerns for patient communities.
3) Capacity Building for Patient Representatives: Over 120 participants from across Greece benefited from 3 educational cycles, 28 seminars, and 5 workshops, equipping them with essential skills in health policy, networking, and organizational management. Associations now have enhanced capabilities to advocate effectively, manage resources, and implement initiatives.
4) Enhanced Collaboration and Networking: Fostered stronger ties among patient associations, academic institutions, and health experts. Facilitated partnerships with 23 professors from 8 universities, creating a foundation for long-term collaboration and knowledge sharing.
5) Improved Access to Advisory Services: Delivered 36 tailored advisory sessions to patient associations, addressing their specific challenges and improving their operational efficiency.
6) Increased Engagement in Research: Facilitated 48 participations in research projects, promoting the use of evidence-based practices in program design and advocacy.
7) Horizontal Public Health Interventions: Conducted 50 interventions on cross-cutting health issues, addressing systemic barriers and improving access to care for patients across Greece.
Key Beneficiaries:
- Patient Associations and Representatives
- Patients Across Greece
- Policymakers and health professionals