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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Evangeli Bista Joins the PATH Expert Group as an Independent Expert: Bringing the Patient Perspective into the New Era of AI in Cancer Care

A new contribution to the European dialogue on safe, responsible and human-centred Artificial Intelligence in healthcare

Evangeli Bista, Co-founder and Head of Operations and Development of Kapa3 – Cancer Guidance Centre, has been invited to join the Expert Group of the European research and innovation project PATH – Patient AI Treatment Hub as an independent expert.

Her participation is undertaken in a personal and independent capacity, with her professional affiliation to Kapa3 – Cancer Guidance Centre, creating an opportunity to bring into the European dialogue experience gained through direct engagement with people affected by cancer, survivors, caregivers and healthcare professionals. The PATH Terms explicitly define Expert Group members as acting independently rather than as partners, employees, agents or subcontractors of the Consortium.

What is PATH – Patient AI Treatment Hub?

PATH – Patient AI Treatment Hub is a European research and innovation project focused on supporting the safe and effective integration of Artificial Intelligence into cancer care through the development of a secure, interoperable and privacy-preserving digital platform.

The project aims to explore how Artificial Intelligence tools can be safely integrated into cancer-care pathways, supporting healthcare professionals and contributing to more personalised approaches while safeguarding privacy and health data.

At the heart of this effort lies a critical question:

How can technological innovation create meaningful value for patients while preserving trust, human oversight, safety and equity?

Participation in the PATH Expert Group

As a member of the PATH Expert Group, Evangeli Bista will contribute independent expertise, opinions, input, comments and feedback in relation to selected project use cases and activities.

The experience developed through Kapa3’s work can contribute to discussions around issues such as:

patient-centred cancer care,
patient navigation across health and social-care systems,
equitable access to information and services,
health and digital literacy,
health and social rights,
responsible use and protection of health data,
transparency and human oversight in Artificial Intelligence systems,
meaningful involvement of patients and civil society in technology design,
and translating technological innovation into real value for people.

Why the Patient Voice Must Be Part of Innovation

Artificial Intelligence is creating new possibilities for healthcare and cancer care. At the same time, its growing use raises important questions concerning trust, transparency, safety, equitable access and human oversight.

For Kapa3, the development of a digital solution cannot begin solely with the question of what is technologically possible.

It must also ask:

What does the patient actually need?

Can people understand the information they receive?

Do they know where that information comes from?

Can they trust the system?

Is it clear when Artificial Intelligence is being used and when human professional judgement is required?

Could digital inequalities lead to new inequalities in healthcare?

And ultimately, does innovation genuinely improve the experience and pathway of a person facing cancer?

These are questions that we believe should remain at the centre of the European discussion on Artificial Intelligence in healthcare.

Kapa3’s experience in digital health

Evangeli Bista’s participation in the PATH Expert Group comes at a time when Kapa3 is systematically expanding its work in digital health, patient navigation and the responsible use of emerging technologies to support people affected by cancer.

This broader work also includes MYRTO – Digital Navigator for Health and Social Rights, an independent Kapa3 initiative developed to help transform complex and often fragmented information on rights, benefits and administrative procedures into more accessible, structured and evidence-based guidance for patients and caregivers.

MYRTO is not part of PATH, and the two initiatives are independent from one another.

However, the experience of developing patient-facing digital services has reinforced several principles that Kapa3 considers essential:

reliable information, transparent sources, understandable communication, data protection, human oversight and a clear pathway to professional support when technology alone is not enough.

This distinction is also important from an intellectual-property perspective, since the PATH Terms preserve intellectual property that exists independently of the Expert’s Services and is not incorporated into PATH Contributions.

From information to trust

Digital transformation in healthcare is not simply about more data, more algorithms or more applications.

It is about creating greater understanding, better access and stronger trust.

For a person facing cancer, information has value when it can be translated into a meaningful next step.

Technology has value when it reduces — rather than increases — complexity.

And Artificial Intelligence has value when it strengthens, rather than replaces, human care, professional judgement and the patient’s ability to participate meaningfully in decisions affecting their life and health.

A new opportunity to contribute to the European dialogue

For Kapa3, the invitation to Evangeli Bista to participate as an independent expert in the PATH Expert Group represents an important opportunity to bring into the European dialogue experience, needs and concerns emerging from the real-world context of cancer care and patient support.

The objective remains clear:

Artificial Intelligence in healthcare should advance with safety, transparency, responsibility, equitable access and meaningful involvement of the people it is designed to serve.

Because innovation creates real value when it is designed with people and for people.

PATH – Patient AI Treatment Hub | At a glance

Field: Artificial Intelligence and data in cancer care
Project: PATH – Patient AI Treatment Hub
Focus: Safe and effective integration of AI into cancer care through secure, interoperable and privacy-preserving approaches.
Expert Group: Independent external experts providing expertise, opinions, input, comments and feedback to the Project.
Independent Expert: Evangeli Bista
Professional role: Co-founder & Head of Operations and Development
Affiliation: Kapa3 – Cancer Guidance Centre

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.

World Self-Care Day (July 24): The Importance of Self-Care on the Journey with Cancer.

July 24 has been designated as World Self-Care Day. This symbolic date (7/24) was chosen to remind us all of something very basic: that taking care of ourselves is a process that deserves to continue 24 hours a day, 7 days a week.

At the Cancer Patient Support Center, this day takes on a deeper and more meaningful significance. Self-care is not merely a luxury or a passing trend, but a valuable tool for physical, mental, and emotional empowerment—both for patients undergoing treatment and for their caregivers.

What does “self-care” mean?

According to the World Health Organization (WHO), self-care is defined as the ability of individuals, families, and communities to promote health, prevent disease, maintain well-being, and manage illness with or even without the support of a health professional.

This is an active commitment to ourselves, which includes:

1. Healthy daily habits: proper nutrition, adequate sleep, and moderate physical activity (always in consultation with your treating physician)

2. Prevention and responsibility: consistent medication adherence, regular preventive checkups, and following medical instructions.

3. Mental and emotional balance: recognizing personal boundaries, managing stress, accepting our emotions, and seeking help wherever and whenever we need it.

4. Health and health literacy: responsibly staying informed about our health status from reliable sources.

Self-Care in the Cancer Experience

For someone who has experienced cancer, self-care takes on a very personal character. It does not mean that “one must do everything on one’s own.” On the contrary, it is essential to:

• Listen to their body, without feeling guilty about the need for rest

• Take care of their emotional well-being. Allow themselves to feel every emotion—fear, fatigue, but also hope. Psychological support is considered one of the most important acts of self-care.

• Build a support network. It is absolutely essential to allow loved ones or specialized professionals to support them.

Caring for Caregivers

World Self-Care Day is equally dedicated to those who care for patients—family members, partners, and friends. People who stand by patients often tend to neglect their own needs, thereby driving themselves to physical and mental exhaustion. This day serves as a reminder that caring for caregivers is not selfish but an urgent necessity.

For caregivers to practice self-care in practice, they must first set boundaries, as they do not need to bear the entire burden alone. At the same time, it is important for them to acknowledge their emotions without judgment, accepting that fatigue, anger, and frustration are normal reactions. It is equally essential to set aside personal time. Fifteen to thirty minutes a day for a walk or to read a book can be beneficial. Finally, seeking psychological support is not a sign of weakness but an act of self-care.

The Cancer Patient Guidance Center is here for you

At K3, we believe that no one should have to walk this path alone. Self-care is strengthened when there is guidance, reliable information, and human support.

On this special day, let’s all take a step back from the fast pace of life and make our health and well-being a priority.

24 hours a day, 7 days a week: let’s take care of ourselves!

“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.

DISABILITY CARD OR TRANSPORTATION PASS FOR PEOPLE WITH DISABILITIES 2026. WHAT BENEFICIARIES NEED TO KNOW.

The new explanatory circular regarding transportation for people with disabilities (PWDs) for 2026 has raised several questions among beneficiaries and their families who are trying to understand what the current rules are. The most common question is: “I have the plastic Disability Card. Do I also need to get a PWD Transportation Pass?” The answer is that the Disability Card has not completely replaced the Transportation Pass. Both of these documents remain valid simultaneously, and the need for one or the other depends on the mode of transportation used by each eligible person. To make this clearer, here’s what applies in each case.

Athens and Thessaloniki: The Disability Card can be used for urban travel

For travel on OASA transit in Athens and OSETH transit in Thessaloniki, the plastic Disability Card can be used by eligible beneficiaries.

Cardholders can travel by validating their card at the designated machines, without needing to obtain a separate Travel Pass specifically for these transit services.

The following are required:

the Disability Card must be valid,
must bear the designated disability level II or III designation,
or the beneficiary must receive disability financial assistance from OPEKA,
and income criteria must be met where required.

URBAN KTEL BUSES IN THE PROVINCE: THE TRAVEL PASS REMAINS NECESSARY

This is the point that has caused the most confusion. Possession of a Disability Card does not mean that the Travel Pass is no longer required for all trips.

For urban KTEL buses operated by the Regional Units, as well as by the municipalities of Kos and Rhodes, a Mobility Card for People with Disabilities is required, even if the beneficiary holds a Disability Card.

Therefore, those who use urban KTEL buses in their area should apply:

at the Citizen Service Centers (KEP),
or at the relevant offices of the Regional Unit.

FOR 2026, THE PROCESS BEGINS ON JULY 1, 2026, AND ENDS ON NOVEMBER 30, 2026.

Intercity Buses (KTEL): 50% Discount on Fares

For travel on intercity buses (KTEL)—that is, for trips from one city to another—a 50% discount is available.

The discount can be obtained with:

A valid Disability Card,
or a Transportation Pass for People with Disabilities.

Thus, for intercity routes, the beneficiary has more options.

Are there income criteria for free transportation?

One point that often causes confusion concerns income. There are no income criteria for issuing the Disability Card.

The income limits apply to eligibility for free transportation.

For 2026, the limits are as follows:

individual taxable income up to 23,000 euros,
declared family income up to 29,000 euros.

The family income limit increases by 5,600 euros for each additional person with a disability of 67% or higher who lives with and is financially dependent on the taxpayer.

It is important to note that: OPEKA disability benefits are not included in the above income limits. A relevant certificate from OPEKA may be required to exclude them.

Who is exempt from the income criteria?

People who are totally blind are exempt from the income criteria.

What applies to the companion?

In many cases, a companion is also entitled to travel.

If the Disability Card is marked with an “S” (Companion):

in Athens and Thessaloniki, the companion travels with the cardholder upon a single validation of the card. For KTEL buses, however, the prescribed procedure and the corresponding Companion Travel Pass are required where necessary.

So, what do beneficiaries need to keep?

The Disability Card is a significant benefit, but it does not mean that the Travel Pass is being eliminated.

In simple terms:

Disability Card:

✔ Athens and Thessaloniki

✔ Intercity KTEL buses for a 50% discount

Travel Pass:

✔ Provincial KTEL buses

✔ Situations where a companion’s entitlement is required

✔ Those who do not have a Disability Card

At Kapa3, we believe that accurate information can save time, trips, and unnecessary hassle, especially for people who already face increased challenges due to a disability or a serious illness.

View the circular here: TRANSPORTATION 2026

DISABILITY CIRCULAR

For more information, please don’t hesitate to contact the Kapa3 team:

📍Athens: 13 Kosti Palama, 3rd floor, (9:00 AM – 5:00 PM)

📍13 Kosti Palama, 11141 Athens

☎️210 5221424

📱6906265170

www.kapa3.gr

info@kapa3.gr

July: Global Sarcoma Awareness Month

July has been established internationally as Sarcoma Awareness Month, a rare but particularly important group of cancers that often remains unknown to the general public. Raising awareness about sarcomas is not just about learning about a rare disease; it is about the early recognition of symptoms, access to specialized care, support for patients and their families, and the need to ensure that no one is left alone to face a difficult diagnosis.

Sarcomas are malignant tumors that develop in the tissues that support, connect, or surround organs and body parts. They can occur in muscles, fat, tendons, blood vessels, nerves, connective tissues, tissues surrounding the joints, and bones. They can occur almost anywhere in the body, with the most common sites being the extremities, the trunk, the abdomen, and the retroperitoneal space.

Despite their rarity, sarcomas are of particular importance. They account for approximately 1% of cancers in adults, while in children and adolescents the percentage is proportionally higher, reaching about 15–20% of pediatric malignancies. It is, therefore, a disease that can affect all age groups and requires increased vigilance on the part of both the general public and healthcare professionals.

One of the key characteristics of sarcomas is that, in the early stages, they may not cause severe pain or obvious symptoms. They are often noticed as a painless lump, a swelling that grows, persistent swelling, or pain that does not subside and cannot be explained by an injury. When a sarcoma develops deeper within the body—for example, in the abdomen or chest—it may go unnoticed for a longer period of time and only cause symptoms once it grows in size or presses on nearby organs, nerves, muscles, or blood vessels.

Symptoms that warrant medical evaluation include a new or growing lump, pain in bone or soft tissue, difficulty moving, persistent swelling, abdominal pain, unexplained weight loss, shortness of breath, or gastrointestinal symptoms when the tumor is located internally. These symptoms do not necessarily indicate the presence of a sarcoma, but when they persist or worsen, they should not be ignored.

The diagnosis of sarcoma requires a specialized medical approach. It typically involves a clinical examination, imaging tests such as ultrasound, MRI, or CT scan, and confirmation via biopsy. It is particularly important that the biopsy and evaluation of the sample be performed according to a proper protocol by a team with experience in sarcomas, as the accurate diagnosis of the subtype, grade, and stage of the disease has a decisive impact on the treatment strategy.

Treatment is personalized and depends on the type of sarcoma, its location, size, grade, stage, the patient’s age, and overall health. It may include surgery, radiation therapy, chemotherapy, targeted therapies, immunotherapy, or a combination of these. Modern oncological care places particular emphasis on interdisciplinary collaboration so that the patient is treated holistically rather than in a fragmented manner.

Early diagnosis, referral to specialized centers, and collaboration among different medical specialties can significantly contribute to the best possible management of the disease and the maintenance of quality of life. Advances in medicine, surgical oncology, radiation therapy, molecular diagnostics, and targeted therapies are creating new possibilities for many patients, while participation in research and clinical trials remains crucial for improving treatment options.

However, managing sarcoma is not merely a medical issue. A diagnosis of a rare cancer is often accompanied by uncertainty, delays, difficulty accessing specialized information, financial burden, psychological stress, and the need for guidance within a complex health and social protection system. For this reason, information, social support, psychosocial empowerment, and access to patients’ rights are critical components of comprehensive care.

The Cancer Patient Guidance Center – Kapa3, through its information, social guidance, and support services, stands by people affected by cancer and their families. Kapa3’s collaboration with the Hellenic Sarcoma Patients Association – Sarcoma Fighters reinforces this effort, highlighting the importance of networking, accurate information, patient advocacy, and collective action.

With the central message that no one should feel alone in the face of sarcoma, July provides an opportunity to talk more about a rare disease that needs visibility. To learn. To pay attention to our bodies. To seek medical advice when something persists. To support those who are ill. To participate in information and awareness campaigns. To promote access to early diagnosis, specialized treatment, and compassionate care.

Knowledge is no substitute for medical advice, but it can be the first step toward taking action. And when knowledge is combined with solidarity, cooperation, and access to care, it can fundamentally change a patient’s journey.

Please do not hesitate to contact us for anything you may need.

The KAPA3 team stands firmly by patients and caregivers to provide guidance and ensure their rights are protected. 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

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

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.