Co-creation in health research: from participation to meaningful influence

A new scientific study proposes a framework for understanding who participates in research, when they participate, how they contribute — and how much influence they actually have

Co-creation is becoming increasingly important across public health, research, social innovation and the design of healthcare services. Patients, caregivers, citizens, healthcare professionals, researchers and communities are more frequently being invited to contribute to the development of interventions, services and solutions.

Yet an important question remains:

What does “participation” actually mean?

The presence of a patient or community representative in a meeting does not necessarily mean that they can influence the design, decisions or outcomes of a research project. Similarly, being asked to complete a survey is fundamentally different from helping to design an intervention, interpret findings or determine how results are shared.

A new open-access study, published on 19 August 2026 in the Journal of Public Health, addresses this challenge. Katrina Messiha, Mai J. M. Chinapaw, Johannes C. F. Ket, Renée I. Wink and Teatske M. Altenburg developed the Co-creation Roles Framework, an operational framework designed to systematically describe and classify the roles of different stakeholders in co-creation research.

Moving beyond “who was involved?”

One of the study’s most valuable contributions is its shift away from simply recording whether stakeholders participated towards examining the nature, depth and quality of that participation.

The framework captures eight key dimensions:

the research stage at which participation occurs,
the target group or stakeholder involved,
the aim of involvement,
how stakeholder knowledge is used,
the level of engagement and influence,
the form of co-creation,
the platform through which engagement takes place,
and the duration of engagement.

The relevant question therefore becomes much more precise than “Were patients or citizens involved?”

Instead, researchers can ask:

When were they involved? What were they asked to contribute? How was their knowledge used? And how much influence did they actually have over decisions?

What did the study find?

To demonstrate the practical application of the framework, the researchers conducted a systematic review following PRISMA guidance.

They analysed 39 scientific articles representing 19 youth-focused public health projects based on co-creation, Youth Participatory Action Research or Community-Based Participatory Research approaches.

The analysis revealed substantial variation in the ways stakeholders were engaged.

One particularly striking finding was that, under the strict definition used in the framework, none of the 19 projects reached the highest level of engagement — “empowerment”, where stakeholders hold genuine decision-making authority.

During the implementation stage, consultation and involvement were the most frequent levels of engagement, while consultation was also the most common approach during evaluation.

This finding matters.

It demonstrates that describing a project as “co-created” does not automatically mean that the people for whom an intervention is being developed have meaningful power to shape it.

Participation should not end when the research ends

Another important finding concerned dissemination and reporting.

Only 4 of the 19 projects included a reporting stage extending beyond conventional academic publication.

In some cases, young stakeholders were involved in presenting findings, communicating results within their communities, or developing dissemination materials and practical tools. Overall, however, stakeholder involvement in the final stages of the research process remained limited.

This is highly relevant to health research.

People who contribute their lived experience, time and knowledge to a study should not be considered merely a source of data. They can also play an important role in interpreting findings, shaping key messages and helping return knowledge to the communities from which it originated.

From patient participant to patient co-creator

This discussion has particular relevance for cancer research and cancer care.

Patients and caregivers hold a form of knowledge that clinical evidence alone cannot provide: the lived experience of illness and care.

They understand what treatment means in everyday life; where administrative, social or practical barriers interfere with care; whether a digital health service is genuinely understandable and accessible; which questions remain unanswered; and which outcomes actually matter to the people living with cancer.

Using this knowledge is not simply a matter of representation.

It is a matter of research quality.

For a patient-support organisation such as Kapa3, co-creation therefore means more than inviting patients into an existing process. It requires creating the conditions in which lived experience can become knowledge, knowledge can shape design, and design can ultimately lead to more relevant, accessible and person-centred services.

A framework for planning future research

The authors emphasise that the Co-creation Roles Framework may be valuable not only for describing completed research, but also for planning and evaluating future projects.

Research teams may use it prospectively to clarify stakeholder roles from the beginning, while funders, ethics committees and scientific journals could potentially use such structured approaches to assess how clearly and meaningfully stakeholder participation has been planned and reported.

At the same time, the framework should not yet be regarded as a definitive standard.

The authors explicitly call for external validation across diverse co-creation settings. They also recognise an important limitation: non-academic stakeholders were not directly involved in developing the framework itself, which may limit its sensitivity to some experiential and contextual understandings of stakeholder roles.

Recognising these limitations is itself an important part of advancing more rigorous participatory research.

The next challenge: not simply more participation, but more meaningful participation

Co-creation should not become another box to tick in a research proposal.

The more important challenge is to be able to demonstrate:

who had a voice, when that voice was heard, how it influenced decisions and what ultimately changed because of that contribution.

As healthcare moves towards more participatory, person-centred and digitally supported models of care, the shift from research about patients to research with patients, and ultimately towards research shaped together with patients, may become one of the defining requirements for research that is both scientifically robust and genuinely relevant to people’s lives.

Scientific source

Messiha K, Chinapaw MJM, Ket JCF, Wink RI, Altenburg TM. Development and application of a framework for classifying stakeholder roles in co-creation research: a Health CASCADE study. Journal of Public Health. Published 19 August 2026. DOI: 10.1007/s10389-026-02881-2.

Messiha_et_al-2026-Journal_of_Public_Health

Κapa3 at IEEE CBMS 2026 | AI for Equitable Oncology Information

Kapa3 at IEEE CBMS 2026: Artificial Intelligence in Support of Equitable Patient Information in Oncology Care

New scientific publication in the Proceedings of the 39th IEEE International Symposium on Computer-Based Medical Systems

The voice and lived experience of patients must remain at the centre of the emerging era of Artificial Intelligence in healthcare.

Kapa3 – Cancer Guidance Centre contributes to a new scientific publication presented in the Proceedings of the 2026 IEEE 39th International Symposium on Computer-Based Medical Systems (CBMS), focusing on how Artificial Intelligence and Retrieval-Augmented Generation can support more equitable, reliable and patient-centred access to information in oncology.

The paper, entitled:

“Informed, Empowered, and Heard: AI and Retrieval-Augmented Generation as Tools for Equitable Patient Information in Oncology”

is authored by Lars Münter, Evangeli Bista, Maria Lavdaniti and Christos Frantzidis, with Evangeli Bista representing Kapa3 as Co-founder.

From access to information to meaningful patient empowerment

A cancer diagnosis creates an immediate need for information that is reliable, understandable and relevant to the individual patient.

At the same time, patients and their families are often expected to understand complex medical terminology, treatment options, prognosis discussions and administrative procedures at a moment of intense psychological and emotional pressure.

The paper highlights that acute stress associated with a serious diagnosis can affect working memory, attention and the ability to process new information. This means that patient information cannot be designed for an ideal, fully attentive reader; it must respond to the real cognitive and emotional conditions experienced by people facing cancer.

The key question is therefore not simply:

“How much information do we provide?”

but rather:

“Are we providing the right information, at the right time, in a form that people can understand and act upon?”

AI and Retrieval-Augmented Generation: towards trustworthy and evidence-grounded information

The publication places particular emphasis on Retrieval-Augmented Generation (RAG).

RAG architectures combine the generative capabilities of large language models with the retrieval of information from curated and verified knowledge sources. In a healthcare setting, this can include clinical guidelines, validated patient information resources, regulatory documents and peer-reviewed literature.

This approach offers an important advantage over purely generative AI systems: responses can be grounded in identifiable sources, supporting greater transparency and enabling patients and healthcare professionals to verify where information comes from.

In oncology, this is especially important.

A patient does not simply need a quick answer. They need information that is:

accurate, current, understandable, accessible and appropriate to their individual situation.

Artificial Intelligence as a tool for equity

One of the central themes of the paper is inequality in access to high-quality oncology information.

Geography, language, socioeconomic circumstances, health literacy, digital literacy and access to specialised healthcare services can significantly influence a person’s ability to understand their diagnosis, treatment options and rights.

The publication pays particular attention to the Greek context, where patients living in large urban centres may experience a very different information environment from those living in rural, remote or island communities.

When equity is treated as a core design principle, AI-RAG systems can potentially support:

multilingual access to health information,
different levels of language and information complexity,
voice-based interfaces,
shorter and more manageable units of information,
low-bandwidth or offline-capable solutions,
and opportunities for patients to return to information when they are ready to process it.

Technology alone, however, does not create equity.

The way technology is designed determines whether it reduces existing inequalities or reproduces them.

Designed with patients, for patient needs

The paper calls for an important shift in the way digital health systems are developed.

Many traditional health information systems are designed primarily around institutional or clinical workflows, with patient-facing communication added later.

For patient-centred AI, this logic must be reversed.

Systems should be designed with patients and around patient needs, with patients and informal carers actively involved in shaping the knowledge base, the questions the system is expected to answer and the ways information is presented.

This also means moving beyond systems that simply respond to individual questions.

A meaningful AI-supported information environment could help patients prepare for clinical consultations, organise their questions, understand the next steps in their care and become more aware of their rights.

The paper highlights applications such as consultation preparation guides, question prompts before appointments and post-consultation summaries as examples of how technology can support patients before, during and after important healthcare interactions.

AI should strengthen, not replace, human relationships

Perhaps the most important message of the publication is that the transformative potential of AI in oncology is not primarily technical. It is relational.

Artificial Intelligence should not create distance between patients and healthcare professionals.

It should help strengthen their communication.

A better-informed patient can arrive at a clinical consultation more prepared, identify questions and concerns more clearly, participate more actively in shared decision-making and communicate more effectively with the healthcare team.

The same applies to informal carers, who often carry a significant part of the informational and emotional burden of cancer care.

For this reason, the paper argues that AI-RAG systems should be designed to strengthen the relationship between patients, carers and healthcare professionals, rather than to replace any part of this human network of care.

For healthcare professionals, trustworthy information systems may also reduce the time required for basic information provision, allowing more of the clinical encounter to focus on nuanced discussions, decision-making and the human aspects of care that technology cannot replicate.

From information to trust

This scientific contribution adds to an increasingly important discussion about the future of healthcare:

How can Artificial Intelligence be developed and used in ways that genuinely respond to human needs?

The answer does not lie only in more powerful AI models or larger volumes of data.

It also lies in evidence, transparency, accessibility, co-design, equity and respect for patient rights.

As the paper concludes, people affected by cancer in Greece and across Europe deserve access to information that is accurate, personalised, accessible and respectful of their rights, regardless of where they live, the language they speak or the socioeconomic resources available to them.

For Kapa3, participating in this scientific discussion also reflects a broader commitment: ensuring that real patient needs, lived experience and equitable access are represented in the design and evaluation of the next generation of digital health and AI-supported tools.

Publication details

Title: Informed, Empowered, and Heard: AI and Retrieval-Augmented Generation as Tools for Equitable Patient Information in Oncology

Authors: Lars Münter, Evangeli Bista, Maria Lavdaniti, Christos Frantzidis

Published in: 2026 IEEE 39th International Symposium on Computer-Based Medical Systems (CBMS)

DOI: 10.1109/CBMS69103.2026.00302

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Head and Neck Cancer: The Importance of Early Diagnosis and Prevention.

July 27 has been designated as World Head and Neck Cancer Day (WHNCD). The initiative was launched on July 27, 2014, during the 5th World Congress of the International Federation of Head and Neck Oncology Societies (IFHNOS) in New York, with the goal of raising awareness, education, and the
promotion of prevention. The declaration is supported by dozens of scientific communities worldwide, governments, and, most notably, the UICC (Union for International Cancer Control).

What is Head and Neck Cancer?
This type of cancer includes tumors located in the oral cavity, the lips, the pharynx, the larynx, the
salivary glands, the thyroid gland, the skin of the region, and the cervix.

In terms of prevalence, it is the fifth most common cancer worldwide. Seventy-five percent of cases are located in the mouth and pharynx, while the most common histological type is squamous cell carcinoma (HNSCC). For example, more specifically in Greece in 2012, 1,350 new cases were recorded, a figure that accounted for 3.3% of all new cancer diagnoses in the country.

Based on these percentages, 30% of cases occur in the tongue, 20% on the lip, 15% on the floor of the
mouth and in the larynx, and 10% in the pharynx.

Risk Factors

Understanding the factors that increase the risk is the first step towards prevention. Everyday habits, such as smoking and alcohol consumption, place a significant strain on the body. In particular, 70 per cent of those affected are long-term smokers, with current smokers facing a 300 per cent higher risk. When
smoking is combined with alcohol, the two have a negative synergistic effect, multiplying the likelihood of developing the disease. At the same time, in recent years there has been an increase in HPV-positive cancers, mainly of the pharynx, which often occur in younger people with no history of smoking or
alcohol consumption. Finally, it is worth noting that up to 25 per cent of cases are observed in patients who have never smoked and have no other known risk factors.

Suspicious lesions and symptoms

Delay in diagnosis is the most unfavourable prognostic factor. Conversely, 85–90 per cent of cases can be
cured if diagnosed at an early stage.

Suspected precancerous lesions

Particular care is required when identifying suspected precancerous lesions in the oral cavity. These
include leukoplakia, a white patch of unknown aetiology that does not flake off, in which, in 20–25 per
cent of cases, cancer or severe dysplasia is present. Even more dangerous is erythroplakia, where the rate
of co-occurrence with cancer or severe dysplasia reaches 90 per cent. At the same time, suspicious lesions
include punctate leukoplakia, as well as any chronic ulcer – that is, a sore that is not caused by any
obvious injury and remains unhealed for more than two weeks.

Symptoms requiring medical assessment

There are also certain suspicious symptoms that necessitate immediate assessment by a doctor. These include any unexplained swelling, lump or puffiness in the mouth or throat area, as well as persistent pain when chewing, swallowing or speaking, or pain that radiates to the ear. Furthermore, symptoms such as hoarseness, a change in the tone of the voice, and unexplained bleeding inside the mouth are signs that
should not be ignored.

Prevention and Screening
Screening is particularly important for people over the age of 45, smokers, people who drink alcohol, or
those with a history of HPV infection. Screening involves four simple steps:
1. Neck: Palpation of the lymph nodes and the thyroid gland.
2. Lips: External examination.
3. Mouth: Examination of the tongue, floor of the mouth, cheeks, gums and soft palate.
4. Pharynx: Examination of the tonsils, soft palate and base of the tongue.

The importance of early intervention

Despite advances in surgery, radiotherapy and chemotherapy, the 5-year survival rate remains at around 60 per cent. Furthermore, treatments for advanced-stage disease can affect patients’ quality of life, causing functional (difficulty speaking, chewing, swallowing and breathing), aesthetic or psychological problems.

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.

“Myrto” under Scientific Evaluation: Transparency, Evidence and Human Oversight in Social Navigation for Oncology Patients

The first closed scientific testing workshop of the Digital Health and Social Rights Navigator has been completed

Athens, 6 July 2026

The first closed scientific testing and evaluation workshop of “Myrto”, the Digital Health and Social Rights Navigator developed by the Cancer Patient Guidance Centre – Kapa3, was successfully completed.

The workshop was organised by the Cancer Patient Guidance Centre – Kapa3, with the support of René Descartes – Cnam College and the participation of SimasiaAI. It functioned as a dynamic scientific co-design workshop, bringing together specialised professionals from the fields of healthcare, social care, information technology and personal data protection.

The process was closed and strictly experimental in nature and did not constitute a public presentation of a completed product. Its purpose was to evaluate the behaviour of the application through hypothetical and fully anonymised scenarios, to record correct responses and areas requiring improvement, and to use expert feedback for the next phase of development.

The project “Myrto – Health and Social Rights Navigator” is being developed as a knowledge-based digital social navigation system, guided by the principles of explainable, transparent and human-centred Artificial Intelligence.

Its aim is to transform complex legal, administrative and social information into clear, evidence-based and practically useful guidance for oncology patients, caregivers and citizens.

“Myrto” does not replace professional social, legal, medical or clinical judgement. It operates as a supportive information and navigation tool, with clearly defined functional boundaries, human oversight and the possibility of referral to the competent services and professionals of Kapa3.

The programme is implemented with the support of the TIMA Charitable Foundation.

From Information to Understandable Knowledge

During the workshop, the need that led to the creation of “Myrto” was presented, along with the real barriers faced by patients and caregivers when seeking information on social rights, benefits and administrative procedures.

Particular emphasis was placed on addressing digital and informational exclusion. “Myrto” is designed to transform fragmented and often difficult-to-understand information into simple, structured and comprehensible guidance.

A Thematically Specialised and Curated Knowledge Base

The project’s technical partner, SimasiaAI, presented the operation of the application and the architecture used for information retrieval and synthesis.

“Myrto” uses a hybrid search mechanism that combines text retrieval and semantic search techniques, with the aim of identifying the information most relevant to the user’s question. The application operates on a thematically specialised and curated knowledge base.

A central element of its design is the traceability of information, namely the ability to link an answer to the source on which it is based. The use of validated sources reduces the risk of unsupported responses and enables the identification, review and correction of issues through a process of continuous maintenance, regular updating and adaptation to evolving guidelines and regulatory requirements.

Explainability and Human-Understandable Answers

The evaluation did not focus only on whether “Myrto” retrieves the correct information, but also on whether it can present that information in a clear, understandable and conceptually coherent way.

This approach strengthens trust, responsible use of the tool and the meaningful empowerment of citizens through a response-generation system that supports a transparent, evidence-based and human-supervised knowledge ecosystem, in which every piece of information is understandable, verifiable and connected to its source.

Data Protection and Compliance by Design

Personal data protection and regulatory compliance are embedded from the design stage of the application, in accordance with the principles of data protection by default and by design.

During the workshop, only hypothetical or fully anonymised cases were used. Particular emphasis was placed on the principles of data minimisation, anonymisation and secure processing. These principles are directly linked to contemporary requirements for the responsible development of Artificial Intelligence systems, the protection of special categories of data and compliance with the European regulatory framework.

Live Testing of Hypothetical Scenarios

The professionals who participated in the workshop tested the application individually and in small groups, using only hypothetical and fully anonymised cases. The testing was based on an approach that evaluated the behaviour of the system, examining not only whether the final answer was correct, but also whether the overall operation of the application was safe, understandable and appropriate for the specific request.

Disability Certification through KEPA

In one of the key scenarios, “Myrto” was asked to guide a hypothetical patient who did not know how to start the disability certification procedure through KEPA. The system retrieved the main steps of the process, organised the information in an understandable format and provided relevant references to the sources.

Participants evaluated:

the accuracy of the information,
the completeness of the steps,
the clarity of the language,
and the practical usefulness of the answer.

Travel from the Region for Treatment

In a second scenario, the case of an oncology patient who needed to travel from the region to another location for treatment was examined. The application identified relevant categories of socioeconomic support and benefits and presented possible next steps to the user.

The test allowed participants to assess:

the correct identification of the request,
the connection between different rights and benefits,
the completeness of the sources,
and the possibility of referral to the appropriate services.

At the same time, cases were also examined in which:

the question was unclear or incomplete,
the user did not know which right or benefit to look for,
clarifying questions were required,
medical or personalised legal advice was requested,
or immediate human intervention was necessary.

A Continuous Cycle of Scientific Feedback

The meeting concluded with a discussion of the testing results, a review of the technical logs and the presentation of key usage statistics for the application.

The participants’ observations are not treated as isolated comments, but as structured scientific feedback for improvement. In this way, a closed cycle of learning and feedback is created, in which technology, scientific knowledge and the experience of professionals interact continuously.

The continuous involvement of experts and the integration of structured feedback are considered critical for strengthening transparency, reliability and trust in Artificial Intelligence systems used in sensitive fields.

The Interdisciplinary Project Team

The development, scientific documentation and regulatory compliance of “Myrto” are supported by an interdisciplinary team from the fields of health services administration, information technology, personal data protection, language technology and software development. The workshop was attended by:

Evangeli Bista, Co-founder of Kapa3 and Head of Strategic Partnerships; Aristea Archontidou, Industrial Informatics Engineer with postgraduate specialisation in Health Policy and Health Services Planning; Anastasia Vlachopoulou, lawyer and member of the Thessaloniki Bar Association, specialised in personal data protection; Dimitris Papadakis, Co-founder and Sales Manager at SimasiaAI and Project Manager of the “Myrto” project; and Giannis Barous, Co-founder and CTO of SimasiaAI, PhD candidate in Computer Science based in San Francisco, who has undertaken the technical component of the project: how the system identifies the right information, how it connects it with reliable sources and how it provides answers that are evidence-based, useful and safe.

About Kapa3

The Cancer Patient Guidance Centre – Kapa3 is a social support, information and navigation organisation for oncology patients, survivors, caregivers and their families. Its aim is to contribute to equal access to oncology care, social protection and the rights associated with the cancer experience.

Every day, Kapa3 supports people who face not only the disease itself, but also a range of practical, administrative, social and psychosocial challenges. Through personalised social guidance, the organisation helps patients and caregivers learn about their rights, understand available benefits and services, navigate administrative procedures and connect with appropriate support structures.

The main pillars of Kapa3’s work include information on social and insurance rights, support in accessing health and social care services, guidance on benefits and procedures, empowerment of patients and caregivers, and connection with professionals, organisations and communities.

As part of its digital strategy, Kapa3 develops digital empowerment and social navigation tools, such as “Myrto”, the Digital Health and Social Rights Navigator. “Myrto” is designed to transform complex legal, administrative and social information into clear and evidence-based guidance for oncology patients, caregivers and citizens, always with human oversight, transparency and respect for the limits of technology.

Kapa3’s philosophy is based on the principle that care is not limited to medical treatment. It includes access to information, social protection, psychosocial support, dignity, empowerment and the ability of every person to know and claim their rights.

Through collaborations with health and social care professionals, academic and research institutions, civil society organisations, public structures, volunteers and communities, Kapa3 seeks to build bridges between the patient, information, services and real access.

Information about the actions of Kapa3 in Soufli. An initiative of the Branch and the Social Service of the Municipality of Soufli

On Friday, May 29, 2026, a working meeting was held at the offices of the Evros Branch of the Hellenic Anti-Cancer Society in Soufli, at the initiative of the Branch and the Social Service of the Municipality of Soufli, with the aim of strengthening the support of oncology patients and the cooperation between local bodies.

The meeting was attended by the President of the Evros Branch of the Hellenic Anti-Cancer Society, Ms. Theodora Rokka, the Head of the Social Service of the Municipality of Soufli, Mr. Marinos Mantziaras, Ms. Aristea Archontidou from KAPA3, social workers of the Municipality of Soufli, as well as health professionals of the Soufli Health Center.

Particularly important was the presence of Ms. Kalliopi Kafetzaki, a social worker at the Day Center for Children, Adolescents and Young Adults with Neoplastic Diseases of the Hellenic Anti-Cancer Society, who presented the services of the Day Center and the hostel in Athens, as well as the challenges faced by oncology patients in the region.

The actions of KAPA3 were also presented, while information was provided on digital tools that can facilitate citizens’ access to health services, such as the Health Insurance Fund, the National Health Insurance Fund and the myHealth application. At the same time, the development of “Myrto”, a digital assistant that will support patients, caregivers and health professionals in searching for information and services, was discussed. During the discussion, issues related to inequalities in access to health services in the region, as well as the difficulties that patients encounter in administrative procedures and social benefits, were highlighted.

The meeting concluded with a joint commitment to continue cooperation and develop initiatives that will strengthen the support of oncology patients and their families in the Evros region. We are particularly happy about the presence of Kappa3 throughout Greece and for the trust of social services in our Organization. We remain faithful to the vision and mission of the Organization. For anything you need, please do not hesitate to contact us. The Kappa3 team is constantly by the patients and caregivers’ side to guide and ensure their rights. For any information or support, you can contact us.

You can contact the Kapa3 team at 13 Kostis Palamas, 3rd floor (Opening hours: 09:00 – 17:00). Contact numbers: 210 5221424 & 6906265170. Email: info@kapa3.gr

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

There is an urgent need for psychological support for cancer patients. The KAPA3 team explains and advocates for this

Every day, healthcare professionals are called upon to communicate with, assess, and, above all, support people who are going through cancer.

Does cancer affect only physical health, or does it also have a profound impact on a person’s psychological, social, and emotional life? The needs that arise during the course of the illness are many and are often accompanied by the question: “What does the disease really bring to a person’s life?” A cancer diagnosis brings about significant changes in daily life, relationships, social roles, and the way a person perceives themselves and their future.

A cancer diagnosis is an extremely stressful event, often accompanied by feelings of fear, uncertainty, anxiety, and grief. At the same time, patients are called upon to cope with the effects of treatments such as chemotherapy, radiation therapy, and surgery. Changes in physical appearance, fatigue, pain, and limitations in daily functioning can significantly affect their self-esteem and quality of life (Pitman et al., 2018).

Uncertainty regarding the course of the disease and the likelihood of relapse are significant sources of psychological distress. The extent of this phenomenon is reflected in the meta-analysis by Mitchell et al. (2011), which included 94 studies and more than 14,000 cancer patients. According to the results, 16.3% of patients met the diagnostic criteria for major depressive disorder, 10.3% for anxiety disorder, and 19.2% for adjustment disorder.

These data highlight that a significant proportion of cancer patients experience severe psychological distress, a fact that underscores the need for specialized psychological support.

Furthermore, cancer often affects an individual’s family and social relationships. The patient may be forced to limit or abandon professional and social roles, while the family is called upon to adapt to new demands and responsibilities, experiencing significant psychological strain of their own (Northouse et al., 2010).

Cancer patients have an increased need for psychological support, as the disease significantly affects their psychological, social, and emotional functioning. Fear of the disease’s progression, uncertainty about the future, the side effects of treatments, and the possibility of recurrence are major sources of psychological distress. At the same time, the experience of cancer is often accompanied by feelings of loss of control, fear, and emotional distress. The contemporary psycho-oncology literature recognizes that the early identification of psychosocial needs and the provision of appropriate interventions are an integral part of holistic oncology care (Caruso & Breitbart, 2020; Mehnert-Theuerkauf et al., 2023).

Within this context, psychological support is a key component of holistic care for cancer patients. Holistic care refers to a comprehensive approach that takes into account not only the patient’s physical needs but also the psychological, social, and spiritual dimensions of their health. Counseling, psychotherapy, and support groups provide a safe space for expressing emotions and building psychological resilience (National Comprehensive Cancer Network [NCCN], 2024).

At the same time, they help improve adherence to treatment, strengthen cooperation with healthcare professionals, and maintain quality of life. As Holland and Weiss (2008) argue, psychosocial care is an integral part of high-quality oncology care, from diagnosis through the survival phase.

In conclusion, the experience of cancer is a complex and multidimensional process that affects every aspect of a person’s life. Managing the disease is not limited solely to physical treatment but requires the recognition and addressing of the psychological and social needs that arise at every stage. Providing timely and systematic psychological support can empower the patient, improve their ability to adapt to the demands of treatment, and contribute significantly to maintaining their dignity, hope, and quality of life. Psychological care should be regarded as a fundamental right of every cancer patient and as an integral part of modern oncology practice.

Coordination of Psychological and Social Services within the Framework of Psychosocial Care

The care of cancer patients is not limited to treating the disease and its physical effects. The needs that arise during treatment are often multifaceted and concern both the individual’s psychological well-being and practical, social, or financial issues that affect their daily life.

For this reason, effective support requires close collaboration among different healthcare professionals within a shared framework of psychosocial care. Within this framework, the Social Services and Psychological Services operate in a complementary manner, with the shared goal of enhancing the individual’s quality of life and overall adjustment to the experience of illness.

A client’s contact with the service can begin either through the Social Services Department or the Psychological Services Department. During the initial contact, an assessment of the client’s needs is conducted, and information is provided about all available support services.

Regardless of the initial request, the beneficiary is informed about the option of receiving psychological support, as the experience of cancer is often accompanied by heightened psycho-emotional needs that are not always apparent from the first contact. With their consent, an internal referral can be made to the Psychological Services Department for further evaluation and support.

The Psychological Services Department is responsible for the initial assessment, obtaining informed consent, and creating an individual support file. A structured series of sessions is then provided, tailored to the beneficiary’s needs. During this process, issues may arise related to social benefits, employment challenges, financial burdens, disability certification procedures, or other practical needs that significantly impact the daily functioning of the individual and their family. In such cases, and always with the beneficiary’s consent, cooperation with Social Services is initiated, and Social Services assumes responsibility for managing the relevant social and administrative matters.

The collaboration between the two services enables the timely identification of new needs and ensures continuity of care. Social Services focuses on the practical, social, and administrative aspects of support, while Psychological Services focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services allows for a more comprehensive response to the needs of the cancer patient. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

At the same time, regular communication and coordination between the two services allow for the timely identification of new needs and ensure continuity of care. The Social Services Department focuses on the practical, social, and administrative aspects of support, while the Psychological Services Department focuses on psychological resilience, emotional processing of the experience of the disease, and adaptation to the changes it brings about. The collaboration between the two services enables a more comprehensive response to the needs of cancer patients. In this way, a unified framework of psychosocial care is established that provides substantial support to the patient and their support network at all stages of their journey with the disease.

Kapa3 – Cancer Patient Guidance Center

Together, with knowledge, care, and a human touch.

https://www.kapa3.gr/epikoinonia/ by typing “Psychological Support” in the Message box

OR CALL

2105221424 – info@kapa3.gr

Athens: 13 Kostis Palamas Street, 3rd floor, (9:00 AM – 5:00 PM) 6982003282

Disability Card: Everything KAPA3 beneficiaries need to know about its use and their rights

The Cancer Patient Guidance Center (KAPA3) informs beneficiaries and their caregivers about Clarification Circular No. 12757 issued by the Ministry of Social Cohesion and Family. This circular clarifies the framework for the operation, recognition, and mandatory acceptance of the Disability Card by all relevant agencies.

The Disability Card is the official government document that verifies the holder’s identity and status as a person with a disability. The primary purpose of issuing the card is to protect sensitive personal data, as it does not contain any information regarding the nature of the condition or disability.

Below is a detailed summary of all provisions under the law:

Obligations of Entities and Rights to Service

Mandatory Acceptance: The Card must be accepted by all public and private sector entities, as well as by individuals and legal entities

Priority Service: All entities are required to give priority service to Cardholders in procedures requiring in-person presence and to provide accessibility accommodations.

The Three Forms of the Card (Equal Evidential Value)

Customer service staff are required to accept the Disability Card in whichever of the following forms the citizen chooses.

Printed form: A document with a digital signature from the online portal karta.epan.gov.gr.

Digital form: Via the Gov.gr Wallet app on a mobile device.

Plastic card: A printed form with a standardized design.

Disability Levels and Right to an Attendant

The Card indicates the total disability percentage across three levels, in order to grant the corresponding rights:

Level I: Disability of 50%–66%.

Level II: Disability of 67%–79%.

Level III: Disability of 80% or higher.

“S” Marking (Right to a Companion): If the Card bears the “S” marking, all benefits, rights, and accommodations provided to the cardholder automatically extend to their companion during the period of accompaniment.

What is the status of existing disability certificates?

Please note that disability certificates issued by the competent health committees (KEPAs, ASYE, etc.) remain valid as usual. Citizens who present these certificates instead of the Disability Card will be served as usual in accordance with the provisions applicable to each benefit.

The KAPA3 team stands firmly by patients and caregivers to provide guidance and ensure their rights are protected. For any information or support regarding the use of the Disability Card, please contact us.

June: Cancer Survivors Month

Survival is a victory — but care must continue

June is dedicated to people living with and beyond cancer. It is a month of recognition, hope and respect for every person who has faced a cancer diagnosis, completed treatment, continues treatment, or lives with cancer as a long-term condition.

Cancer survival is a major victory. However, for many people, it is not the end of the story. Life after cancer often brings a new reality: follow-up appointments, fear of recurrence, fatigue, emotional distress, changes in body image, work-related challenges, financial pressure, family adjustments and the need to rebuild everyday life with confidence and dignity.

Cancer Survivors Month reminds us that survivorship is not only about living longer. It is also about living better.

A cancer survivor is not only a person who has completed treatment and is disease-free. The term also includes people receiving maintenance treatment, people living with cancer as a chronic condition, and those who continue to experience the physical, emotional, social or economic consequences of the disease and its treatment.

In recent years, advances in early diagnosis, targeted therapies, immunotherapy, surgery, radiotherapy and supportive care have increased the number of people living many years after a cancer diagnosis. This is a major achievement for medicine, research and public health. At the same time, it creates a new responsibility: to ensure that survivorship care is organised, person-centred and accessible to all.

For many survivors, the end of active treatment is a moment of relief and gratitude. Yet it may also bring uncertainty. Some people feel that everyone around them expects them to “go back to normal”, while they are still trying to understand what has changed in their body, their emotions, their relationships and their daily life.

The fear of recurrence, anxiety before follow-up tests, persistent fatigue, pain, cognitive difficulties, changes in sexuality, emotional vulnerability and social isolation are real experiences for many people after cancer. These needs should not be underestimated. Survivors need space to speak, reliable information, access to professional support when needed, and connection with communities and organisations that understand their journey.

Long-term follow-up is also essential. Survivorship care should not focus only on recurrence. It should also include prevention, early recognition of late effects, management of treatment-related complications, support for mental health, healthy lifestyle guidance and personalised monitoring according to each person’s cancer type, treatment history, age and individual risk factors.

The message is not fear. The message is awareness, prevention and continuity of care.

Life after cancer is also about rights. It is about returning to work, accessing social benefits, understanding available services, managing financial toxicity, supporting caregivers, protecting dignity and ensuring equal access to care. Survivorship must be seen as a social, psychological and practical issue — not only a medical one.

At Kapa3, we see every day that cancer does not always end with the last treatment. It continues in the questions people ask about their rights, their next steps, their follow-up, their access to benefits, psychological support, work, family life and social reintegration.

This is why people living with and beyond cancer need holistic support. They need information, guidance, psychosocial care, access to rights and services, empowerment and continuity of care. No one should feel alone after treatment. No one should be left to navigate bureaucracy, uncertainty or lack of information without support.

Cancer Survivors Month invites us to change the way we talk about survival. We should not ask only: “Did the person survive cancer?” We should also ask:

Are they living with quality of life?
Do they have access to the care they need?
Do they know their rights?
Do they receive psychological and social support?
Can they return to work and daily life with dignity?
Is there a follow-up plan?
Is there someone to guide them when they do not know where to turn?

Cancer survival is a victory. But the real challenge is to turn this victory into a life with quality, safety, rights, support and hope.

At Kapa3, we continue to stand beside every person living with and beyond cancer. Through information, guidance, empowerment and human-centred support, we believe that care does not stop at treatment.

It continues in life.

Alpha Bank and Its Employees Support Kapa3 through the Match for Good Initiative

The Cancer Guidance Center – Kapa3 warmly thanks Alpha Bank and its employees for their meaningful support through the Match for Good initiative, through which Alpha Bank doubled the contribution of its employees.

Through this initiative, six non-profit organisations from across Greece received financial support during a special event held at Alpha Bank’s headquarters, in the presence of representatives of the organisations. The event was hosted by the Chairman of Alpha Bank’s Board of Directors, Mr. Dimitris Tsitsiragos, and the Chief Human Resources Officer, Ms. Fragiski Melissa.

Mr. Dimitris Tsitsiragos highlighted that the Match for Good initiative puts into practice Alpha Bank’s commitment to consistently support organisations that create a positive social impact. He underlined that when the individual contribution of employees is combined with the Bank’s support, it becomes a collective force with tangible results.

Ms. Fragiski Melissa noted that Match for Good reflects the Bank’s new culture in practice, giving employees an active role in selecting, participating in and supporting initiatives with social value.

Kapa3 was represented by Ms. Evangeli Bista, co-founder of the Organisation, and Ms. Despoina Chrysostomidou, collaborating psychologist. During the event, they had the opportunity to present Kapa3’s work and discuss the social impact that can be created when corporate responsibility meets the active participation of employees.

For all of us at Kapa3, this support is particularly meaningful. It strengthens our daily effort to stand beside people with lived experience of cancer, as well as their families and caregivers, offering guidance, information, support in accessing rights and services, and practical empowerment tools.

Kapa3 acts as a navigation and support organisation for cancer patients, bridging the gap between need and information, between rights and real access. For many people, especially those living outside major urban centres, the challenge is not only the disease itself. It is uncertainty, bureaucracy, lack of information about available rights, financial burden, transportation difficulties, psychosocial pressure and the need for a reliable companion.

Through initiatives like this, social contribution gains multiplying power and becomes real support for those who need it. The support of Alpha Bank and its employees strengthens Kapa3’s mission: ensuring that no person is left alone when facing cancer, searching for information, navigating procedures or claiming a right they are entitled to.

Health is not only a medical act. It is access, information, dignity, social care and meaningful presence. Every contribution to Kapa3 becomes more guidance, more information, more empowerment and more care for people and families going through a difficult and demanding journey.

We warmly thank Alpha Bank and its employees for their trust, choice and support of Kapa3’s work.

Because when giving becomes collective, it can meaningfully change people’s everyday lives.

20260310 Match For Good Programme Part2 Alpha Bank Via Solid Havas / Thalia Galanopoulou

Match for Good – Alpha Bank (1)