dissemination of results Archives

The Active Role of Patient Organizations in Shaping Public Policy: How Our Health Advocacy Ef orts Are Put into Action

At the Cancer Patient Guidance Center, we believe that the voices of patients, their families, and the organizations that represent them must be heard loud and clear where decisions are made.

Improving the quality of life for cancer patients, ensuring access to new treatments, and meeting the needs of caregivers are not just requests but rights that are asserted through organized advocacy. To make this a reality, the right tools are needed.

The new “Guide to Mapping Public Consultation Tools”

As part of the “ENERGO – Toward an Open State” project, HIGGS has created a practical guide that maps the available mechanisms for participation at the local, national, and European levels.

This guide serves as a roadmap for Civil Society Organizations (CSOs), providing a detailed overview of:
• How institutional consultation tools function
• The opportunities for organizations to actively participate in policy-making
• The requirements for accessing these mechanisms
• The challenges and limitations, so that our interventions are well-informed and effective

Why might this be of interest to the beneficiaries of our Center?

Participation in shaping public policy is not an abstract concept. In cancer care, it translates into very specific changes:
1. Equal access to care: advocating for better infrastructure, shorter wait times, and free access to innovative medications.
2. Support for caregivers: establishing leave policies, benefits, and support systems for the people who stand by their side
3. Rights in the workplace: protecting cancer patients from discrimination in the workplace during and after treatment.

Summary & Structure of the Public Consultation Tools Guide

The “Public Consultation Tools Guide” was developed as part of the project “ENERGO – Toward an Open State” (implemented by HIGGS and co-funded by the European Union, the Bodossaki Foundation, and the NGO Support Centre). It is a practical reference tool designed to empower civil society organizations (CSOs) by strengthening their capacity for meaningful, evidence-based participation in public policy-making and strategic advocacy.

The guide is organized into the following sections:

1. Introduction & Institutional Landscape: This section presents the framework for the guide’s development, which was based on research and experiential tools involving dozens of civil society organizations. It analyzes the challenges of the institutional landscape, noting that the main obstacle for organizations is not the absence of tools, but rather the fragmentation, lack of visibility, and complexity of existing mechanisms,

2. National Tools for Public Consultation & Participation: maps and presents in detail the tools available in Greece, such as OpenGov, the KEDE & LocalWatch consultation platform, Vouliwatch, the YPEN Participation Platform, the National Register of Procedures (“Mitos”), Open Council & Crowd Participation, as well as Diafania & POTHEN.

3. European Public Consultation & Participation Tools: presents mechanisms for engagement at the European Union level, such as Have Your Say, the European Citizens’ Initiative (ECI), Consul Democracy, Loomio & Decidim, and others.

4. Tool Selection Guide & Conclusions: Provides consistent evaluation criteria (purpose, implementing body, prerequisites, limitations) so that each organization can select the most appropriate tool based on the objective of its engagement.

About the “ENERGO” Project & the PLATO Program

The “ENERGO: Toward an Open State – Participation, Advocacy, and Empowerment of Civil
Society Organizations” project is being implemented as part of the PLATO program, with HIGGS serving as the implementing partner. The PLATO program (“Protecting democracy, human rights, and the rule of law through an open civic space”) aims to strengthen the fundamental rights and values of the EU in both Greece and Cyprus. It is co-funded by the European Union through the Citizens, Equality, Rights and Values (CERV) program, the Bodossaki Foundation, and the NGO Support Center. The Bodossaki
Foundation serves as the coordinator in partnership with the NGO Support Center.

View and download the guiderZT9sW-Οδηγός Εργαλείων Δημόσιας Διαβούλευσης.

MELODIC: Advancing Mental Health Support for Young Adults with Cancer

The MELODIC project, a European programme focused on the mental health of young adults with lived experience of cancer, launched in September 2024 with the aim of strengthening the mental wellbeing of people aged 18–35, as well as their families. Through collaboration among six European countries, MELODIC combines research, educational activities, and the development of future interventions, promoting a more supportive and personalised approach to care.

MELODIC has already delivered significant outcomes, including outputs related to project management, needs assessment, interview-based research, and the training of healthcare professionals, while preparing upcoming intervention actions and communication and policy strategies.

KEY DELIVERABLES – WHAT HAS BEEN COMPLETED SO FAR

WP1 – Project Management & Quality Assurance

Deliverable 1.1 – Project Implementation Manual:
A management and quality monitoring guide defining implementation requirements, organisational structures, and partner roles.

Deliverable 1.2 – Quality Report:
A quality assurance report outlining procedures to ensure clarity, consistency, and timely delivery of project outputs.

WP2 – Needs Assessment

Deliverable 2.1 – Data Management Plan:
Assessment of the mental health and educational needs of young adults and healthcare professionals, in full compliance with data protection requirements.

Deliverable 2.3 – Interview Study Report:
A comprehensive interview-based study involving young adults, family members, and healthcare professionals across six countries, conducted with ethical approval and presenting key findings.

WP3 – Co-design Guide & Training

Deliverable 3.1 – MELODIC Curriculum:
A training programme for healthcare professionals at EQF level 7, focusing on the identification and support of the psychosocial and mental health needs of young adults with cancer. The curriculum includes learning objectives, training materials, assessment methods, and certification.

WHAT’S NEXT – UPCOMING DELIVERABLES AND ACTIONS

WP4 – Intervention Study

Deliverable D4.1 – Ethical Review:
Ethical approval for the intervention study aiming to improve the mental health and wellbeing of young adults with cancer and their families. The intervention will combine physical activity in natural environments with psychoeducation and informational support.

WP5 – Communication & Policy

Deliverable 5.1 – Communication Strategy:
A communication strategy outlining channels, target audiences, and publication plans for the internal and external dissemination of project results.

Deliverable 5.2 – Policy Outreach Strategy:
A policy engagement strategy at European and national level, including policy and stakeholder mapping and three intervention pillars (European, National, and Project-specific). The aim is to integrate MELODIC training into curricula and to enhance the project’s visibility at European level.

OUR PARTICIPATION IN MELODIC

As part of our active involvement, we have contributed to the production of key deliverables, particularly in data collection through interviews and in the development of the training curriculum for healthcare professionals. Our engagement ensures that the voices of young adults with lived experience of cancer and their families are taken into account at every stage of the project.

For more information and full access to MELODIC deliverables, please visit the project’s official website here.

Text/adaptation: Ifiyenia Anastasiou for Kapa3