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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Kapa3 joins PERIFORMANCE: From Information to Trust in Cancer Care

Kapa3 – Cancer Guidance Centre is pleased to announce that its proposal, “From Information to Trust: MYRTO Patient & Citizen Lab for Equal Access in Cancer Care,” has been selected for funding under the PERIFORMANCE Open Call for Bottom-Up Stakeholder Engagement Initiatives in Cancer Research & Care.

The initiative places patients, caregivers, healthcare and social care professionals, civil society organisations and local communities at the heart of the process, creating a participatory framework for the ethical, trustworthy and inclusive use of AI-enabled cancer navigation.

Putting patients and citizens at the centre

The project is closely linked to MYRTO, Kapa3’s AI-enabled digital social assistant designed to support people affected by cancer in navigating health, social care, administrative procedures and rights-related information.

PERIFORMANCE funding will not support the core technical development of MYRTO. Instead, the project will focus on building the participatory, educational and ethical layer around the tool, ensuring that its future development is shaped by the real needs, experiences and expectations of the people who will use it.

This approach reflects a key principle for Kapa3: technology should not replace human care. When designed responsibly, however, it can become a powerful tool for improving access, empowerment and equality.

From local communities to a national dialogue

The engagement pathway will include regional listening activities, a thematic focus on vulnerable and underrepresented groups, and a central MYRTO Patient & Citizen Lab in Athens.

Particular attention will be given to caregivers, older patients, migrants, people with disabilities, people with low health or digital literacy, socially vulnerable groups and people living far from specialised oncology services.

The Athens Lab will be integrated into Kapa3’s national conference “Equality in Access”, creating a space for synthesising regional experiences, identifying trust criteria and collecting patient and caregiver perspectives on AI-supported navigation.

What does trust in AI-supported cancer navigation mean?

At the heart of the project lies a fundamental question:

What does a person need in order to trust a digital tool during one of the most sensitive periods of their life?

Through co-creation and stakeholder engagement, the initiative will explore issues such as:

reliability and clarity of information,
data protection and privacy,
accessibility and digital inclusion,
responsible use of Artificial Intelligence,
prevention of bias and exclusion,
human oversight,
and clear referral pathways to appropriate professionals when human support is needed.

Bringing together science, civil society and lived experience

Kapa3 will coordinate the initiative and lead its design, implementation, facilitation, patient and community outreach, dissemination and reporting.

The project will be supported by a multidisciplinary academic and scientific collaboration network involving the International Hellenic University – Department of Nursing, University of West Attica – Department of Occupational Therapy, Democritus University of Thrace – Department of Social Work, and University of the Peloponnese – Department of Nursing. simasiaAI will provide technical support for MYRTO-related digital materials and the AI navigation environment.

The project is expected to produce practical resources including a Patient Guidance Toolkit, a Trust & Human Escalation Checklist, a Training and Dissemination Package, and an Engagement & Trust Report.

From information to trust

For Kapa3, participation in PERIFORMANCE marks another step towards ensuring that the patient voice is present not only when new services and technologies are evaluated, but from the very beginning of their design.

With MYRTO, the question is no longer simply:

“How can we provide more information?”

It is increasingly:

“How can we turn information into understanding, trust, safety and real access?”

Because responsible digital health innovation begins with people.

“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.

Kapa3 Report for the First Half of 2026

As the first half of 2026 draws to a close, the Cancer Patient Guidance Center (Kapa3) continues to systematically expand its reach, thereby strengthening the system of care and information for both cancer patients and their caregivers.

During the first half of the year, the organization implemented a series of high-level initiatives and forged partnerships at both the national and European levels, thereby solidifying its position.

The organization’s activities got off to a strong start in January with the welcome of its European partners in the MELODIC Consortium project at a productive two-day workshop (January 19–20), hosted by the School of Public Health at the University of West Attica.

In early February, on the occasion of World Cancer Day, Kapa3 played an active role as a partner of René Descartes College in the webinar “Cancer, Patient Navigation & Health Management: From Prevention to Life Coordination.”

At the same time, significant initiatives were carried out in the local community, such as the “Knowledge Workshop in Megara—From Prevention to Life Coordination,” held on February 8 in collaboration with the Municipality of Megara.

In the area of scientific programs, the Cancer Patient Guidance Center, in collaboration with the Laboratory of Basic Health Sciences (EBEY) of the Department of Nursing at the University of the Peloponnese (PA.PEL), launched a series of online meetings running from February through June, focusing on mental health and nutrition.

The month concluded with the organization’s participation in the international conference “Mapping the Unknown in Oncology – From Hospitals to Homes, Mapping the Future of Oncology Care,” held on February 27 and 28.

March marked a strengthening of Kapa3’s “digital presence” with its official membership in the Hellenic Digital Health Cluster (HDHC), a strategic move aimed at linking healthcare with technological advancements. As an extension of this collaboration, the organization participated in a closed-door members’ meeting as part of Athens Digital Health Week 2026.

On March 11, representatives of the organization attended the diaNEOsis event “Facing the Challenge of Artificial Intelligence” at the Lighthouse of the Stavros Niarchos Foundation Cultural Center, while in the middle of the month, Kapa 3 played a prominent role in the scientific conference “Cancer in 2026: Challenges and Disruptions.” Furthermore, on March 19–20, the organization was represented at the 6th Western Macedonia Nursing Conference on the theme “Innovation and Empathy: Balancing Technology with Human Contact in Nursing.”

In parallel, the organization’s co-founder, Ms. Evangelia Bista, gave an interview on the show “All About Health” on Dion TV—which covered a variety of topics related to health, nutrition, autoimmune diseases, and more—the implementation of the free, 8-week Melodic pilot educational program began.

Kapa3’s scientific credibility was reaffirmed by the publication of the research paper “Person-First or Disease-First? Language Choices in Cancer Communication” in the journal *Nursing Reports*, as well as by Kapa3’s participation in the European project associated with Melodic, titled: “Educational Needs Regarding Mental Health of Professionals Working with Young Adults with Cancer: A European Survey,” which was also published; the organization also participated in the MELODIC Online Symposium 2026 on April 24, contributing to the dissemination of results in Greece.

May was marked by a strong outward focus and new collaborations, as the organization joined the European program Service Learning 2: 0:CoLab, was selected as one of six nonprofit organizations to receive financial support from the Alpha Bank-Match For Good initiative, and began its collaboration with the USTEP INSTITUTE.

At the same time, an awareness campaign was held in Soufli to highlight Kapa3’s activities; Ms. Bista gave an interview to iatronet.gr, and representatives of the organization participated in an international conference at the Medical School of the University of Coimbra in Portugal

Within the organization, the new Psychological Support team was established with great enthusiasm, while on the social media front, the Kapa3 team won six medals at the 4th Vouliagmeni Summer Swim.

As the semester came to a close, June began with the signing of an official cooperation agreement with the Department of Occupational Therapy at the University of West Attica, while partnerships were solidified with the non-profit organization “Karkinaki” and the PRAXI Network of the Foundation for Research and Technology – Hellas (FORTH) to strengthen international networking and access to modern funding tools.

Having completed five years of uninterrupted service in supporting cancer patients through digital guidance, Kapa 3 is entering a new era with the development of the innovative “Myrto” project. This is a pioneering Social Artificial Intelligence (Social AI) initiative in the field of care for cancer patients in Greece. “Myrto” will function as an advanced digital health and rights navigator (Patient Empowerment e-Navigator) for patients, caregivers, and healthcare professionals—a project for which the strategic partnership with SimasiaAi for its co-development was crucial. Finally, the first closed workshop of the MYRTO Al Health Innovation Lab was held for the “Myrto” application, with the support of René Descartes College.

The results of this first half-year clearly demonstrate that Kapa 3 serves as a link connecting innovation, scientific research, and the digital age in the field of oncology care. By combining academic knowledge, European partnerships, and technological development, Kappa 3 transforms every challenge into sustainable, people-centered solutions. Partnerships with leading organizations, investors, and partners who share the same values of social responsibility are also essential to realizing this vision, ensuring that every patient has immediate, reliable, and equitable access to healthcare and their rights.

The KAPA3 team stands steadfastly by patients and caregivers to provide guidance and safeguard their rights. For any information or support, please feel free to contact us.

You can contact the KAPA3 team

13 Kostis Palamas Street, 3rd floor (Hours: 9:00 a.m. – 5:00 p.m.).

Phone Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr

Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

On Tuesday, June 9, a meeting was held to sign a Memorandum of Understanding between the University of West Attica—specifically the Department of Occupational Therapy—and the NGO KAPA3.

The meeting was attended by the Rector of the University of West Attica, Panagiotis Kaldis Penelope Vlotinou, Assistant Professor in the Department of Occupational Therapy Evangelia Bista, co-founder of the organization, as well as representatives from both organizations, including the interdisciplinary team of KAPA3: Despoina Chrysostomou, Psychologist Katerina Georgiopoulou, Social Worker Yiannis Kontogiorgis, Psychologist, and Eleftheria-Irini Polyzoti, an intern from the Department of Social and Educational Policy, as well as students from the Occupational Therapy Department.

During the meeting, a constructive discussion took place regarding the prospects for cooperation between the two organizations, with the aim of developing joint actions and initiatives that will contribute to strengthening education, research, social contribution, and the connection between the academic community and society.

In this context, it was decided in April to jointly organize a major scientific conference, which will focus on an interdisciplinary and holistic approach to health, on combating social inequalities in healthcare, as well as on the management of chronic disease. The aim of this initiative is to raise community awareness, facilitate the exchange of expertise among professionals and scientific bodies, and disseminate scientific knowledge and information to the general public.

Special mention was made of the innovative work of KAPA3, the digital Health Navigator “Myrto,” a modern artificial intelligence tool currently under development and designed to support cancer patients, their families, and their caregivers. “Myrto” will function as a digital assistant (Chatbot) and Health and Rights Navigator, providing immediate, reliable, and personalized information on health, social welfare, rights, benefits, and available support services. The project aims to empower patients, improve their access to information, and reduce inequalities in health and social care through the use of digital technologies and artificial intelligence applications. The development of “Myrtos” represents a pioneering application of social artificial intelligence in the field of oncology care in Greece and is part of KAPA3’s strategy to promote innovation, accessibility, and the active participation of patients in managing their own health.

The meeting concluded in a particularly positive atmosphere of mutual appreciation and recognition. In this context, the Department of Occupational Therapy at the University of West Attica made a symbolic gesture toward the representative of KAPA3, Evangelia Bista, presenting her with a commemorative gift as a token of appreciation for her many years of valuable social contribution in the field of support for cancer patients. At the same time, as a gesture of hospitality and appreciation, the team was offered a specially produced wine, which is an original creation of the University of West Attica.

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

Kapa3 Cancer Patient Support Center and the USTEP Institute announce the launch of their strategic partnership

The Kapa3 Cancer Patient Support Center and the USTEP Institute announce the launch of their strategic partnership, aimed at providing meaningful support to cancer patients and promoting equal opportunities in scientific, social, and educational levels.

The partnership was formalized through the signing of a Memorandum of Understanding, which was signed in Athens on May 26, 2026, by Evangelia Bista, Co-founder and Head of Development and Operations at Kapa3, and Vasileios Stavrou, Co-founder and Scientific Director of the USTEP Institute.

As part of the collaboration, the two organizations will develop joint initiatives that include:

Organizing workshops and conferences focused on patient education, improving the quality of care, and strengthening the relationship of trust between patients and healthcare professionals.

The implementation of information and awareness campaigns on prevention, symptom management, and combating myths and social stigma surrounding cancer.

Collaboration on national and European programs aimed at developing innovative initiatives and actions with a social impact.

Conducting joint research and disseminating the results at the national and European levels.

This partnership reaffirms the two organizations’ commitment to actively contribute to the creation of a more supportive and inclusive environment for people living with cancer, by enhancing access to knowledge, information, and social empowerment.

The Memorandum of Cooperation is valid for one year, with the option to renew upon mutual written agreement by both parties.

New Joint Ministerial Decision on the 2026 Aerotherapy Allowance: A Detailed Guide for KAPA3 Beneficiaries

At the Cancer Patient Guidance Center—KAPA3, we remain committed to providing accurate and timely information to cancer patients and their families regarding the rights and social benefits to which they are entitled. With the aim of making your daily life easier and ensuring you have full access to beneficial legislative provisions, we present a comprehensive guide to the granting of the air therapy allowance, in accordance with the recent Joint Ministerial Decision (No. 89399 EX 2026) published in the Government Gazette, Issue B, No. 3295, dated June 11, 2026.

The air therapy allowance applies to the summer season of 2026.

The amount is set at 250.00 euros and will be paid as a lump sum to the beneficiaries’ bank accounts on July 10, 2026.

The amount is unseizable and fully exempt from any tax or withholding.

Who Are the Beneficiaries

The benefit is granted to disabled retirees of the State and the e-EFKA. Specifically, beneficiaries are those who fall into the following categories:

a) Pensioners referred to in subparagraphs (a) and (b) of paragraph 1 of Article 6 of Legislative Decree 4605/1966.

b) Pensioners under subparagraph (c) of the aforementioned paragraph 1 of Article 6 of Legislative Decree 4605/1966, who, according to

the opinion of the competent Health Committee for the years 2020 through 2026, have been deemed to be in need of this allowance and belong to the following categories of retirees:

Disabled officers under Law No. 2588/1921 and Law No. 875/1979 on military retirement.
Disabled officers under Law No. 362/1943.

iii. Disabled enlisted personnel under Article 1 of Legislative Decree 1044/1971, as amended by Article 1 of

Law 1043/1980.

Disabled members of the former Municipal Police who were subject to Legislative Decree 330/1947.

Disabled members of the Security Forces under Law 1579/1950 and those disabled members of the Coast Guard,

the Fire Department, and the Agricultural Police who are treated as equivalent to them.

Disabled members of the National Resistance under Provisional Act 1855/1951, Legislative Decree 412/1970, and Law 1543/1985.

vii. Persons with disabilities under Law 1370/1944 (who sustained their disabilities during peacetime while in service and as a result thereof, and

receive a disability pension).

viii. Persons with disabilities from the anti-dictatorship struggle under Law 1543/1985.

Disabled civilians under Law 812/1943.

Disabled civilians under Law 1863/1989.

c) Civilian retirees who sustained disabilities as a result of their service (Decision of the Ministry of Labor and Social Security No.

754.6/117/3912/March 24, 1969) and

d) OSE retirees who left the service and are receiving a pension due to tuberculosis.

3. Who Is Exempt from Payment

According to the Government Gazette, the following categories are not eligible for the air therapy allowance:

Recipients of other benefits: Those who have received or are set to receive a corresponding air therapy allowance from any other source (such as public entities, private entities, public benefit organizations, etc.).

Spa Therapy Beneficiaries: Those who have been deemed eligible for spa therapy for the year 2026 by the Directorate for Reserve Combatants, Veterans, War Victims, and War Disabled (DEPATHA).

New Pensioners: Citizens whose pension is payable after September 30, 2026, or whose order for registration in the Pensioner Registers is issued after October 31, 2026.

What to Do in Case of Non-Payment

If you are eligible but the benefit does not appear in your account by the scheduled date of July 10, 2026, the law entitles you to file a retroactive claim.

You may submit a request by December 31, 2026, at the latest, to the following agencies (depending on your category):

To Section E of the Income Policy Directorate of the General Accounting Office (p. 2) .

To the General Directorate of Public Sector Pensions of e-EFKA (p. 2).

You can contact the Kapa3 team

13 Kostis Palamas Street, 3rd floor (Hours: 9:00 a.m. – 5:00 p.m.).

Contact Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr

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.