Health Support Archives

Kapa3 at EUPATI Greece: From Knowledge to Meaningful Patient Involvement in Research

Empowering patient representatives through education, recognising the value of lived experience, and promoting co-creation in health research and policy.

21–23 September 2026 | EUPATI Greece Patient Academy

Kapa3 – Cancer Guidance Centre, represented by its associates Aristea Archontidou and Despina Chrysostomidou, participated in the three-day educational programme of the EUPATI Greece Patient Academy, organised by the Greek Patients’ Association from 21 to 23 September 2026.

This participation reflects Kapa3’s ongoing commitment to strengthening scientific knowledge, health literacy, and the skills of its associates and volunteers, with the aim of providing more meaningful support and representation for people living with cancer.

At a time when clinical research, the development of new treatments, and health technologies are continuously evolving, patient involvement is becoming increasingly important.

However, one critical question remains:

Are patients genuinely involved in shaping the decisions that affect them, or are they still too often limited to the role of passive recipients?

The EUPATI training highlighted the importance of moving beyond simply providing information towards active, informed, and meaningful patient involvement in research, the evaluation of therapeutic interventions, and the design of healthcare services.

EUPATI: Scientific Knowledge and the Empowerment of Patient Representatives

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a European initiative that promotes the education and empowerment of patients and their representatives, enabling them to participate more effectively and confidently in medicines research and development and discussions concerning innovation in healthcare.

The Greek educational programme included presentations, interactive workshops, and opportunities to exchange knowledge and experiences among healthcare professionals, researchers, and patient representatives.

Over the three days, participants explored several key topics, including:

Critical reading and understanding of clinical studies.
Interpretation of statistical data and research findings.
The regulatory framework governing clinical trials and medical devices.
Ethical considerations in research.
The organisation and design of clinical trials.
Patient representation in scientific advisory bodies and decision-making processes.

The practical approach was particularly valuable, as participants were encouraged to analyse scientific data, raise questions, and identify the challenges patients may face when trying to understand a clinical study or evaluate available treatment options.

The programme reinforced an essential principle: scientific knowledge should not remain the exclusive domain of specialists. It should be accessible and understandable to those who are expected to participate in decisions affecting their health and lives.

From Scientific Information to Critical Understanding

One of the main areas addressed during the programme was the critical appraisal of clinical studies and the interpretation of their findings.

Understanding a scientific publication requires more than reading its conclusions.

It involves examining the study design, the population included, the therapeutic interventions investigated, the comparison groups, and the outcomes assessed.

Concepts such as Overall Survival (OS), Progression-Free Survival (PFS), adverse events, quality of life, and statistical significance are particularly important when evaluating the actual benefits of a treatment.

A statistically significant difference does not necessarily translate into an equally meaningful clinical benefit for every patient.

Similarly, measures of treatment effectiveness need to be considered alongside safety data, their impact on everyday life, and individual patient preferences.

Developing these skills strengthens the ability of patient representatives to participate meaningfully in scientific discussions, critically evaluate information, and raise well-informed questions.

Patient Involvement Must Begin Before Research Starts

One of the most important issues highlighted during the educational discussions was the need for meaningful patient involvement from the earliest stages of clinical study design.

Patient and Public Involvement (PPI) is not the same as participating in a clinical trial as a research subject.

Rather, it recognises patients’ lived experiences as a valuable source of knowledge that can contribute to identifying research priorities and shaping the research process itself.

People with lived experience of a condition can provide important insights into which treatment outcomes matter most in everyday life, which research procedures may be excessively burdensome, and what barriers could limit participation in a study.

Moving from research conducted “for patients” to research developed “with patients” represents a fundamental shift in the philosophy of contemporary health research.

Patient Experience Data: When Lived Experience Becomes Part of Scientific Knowledge

Particular importance is attached to Patient Experience Data (PED).

These data capture the experiences, needs, preferences, and priorities of people living with a health condition.

In oncology care, the patient experience extends beyond the clinical response to treatment. It also includes the impact of cancer on employment, family relationships, financial security, daily functioning, and quality of life.

Using such data can contribute to a more comprehensive understanding of treatment needs and the benefit–risk balance.

Informed Consent: From Signing a Document to Genuine Understanding

Informed consent is a fundamental requirement for the ethical conduct of clinical research.

However, signing a document is not enough.

Participants need to understand the purpose of the study, its procedures, potential benefits and risks, available alternatives, and their right to withdraw in accordance with the applicable regulatory framework, without adverse consequences for their standard care.

The use of clear and understandable language, sufficient time to consider the information provided, and the opportunity to ask questions are essential conditions for genuinely informed decision-making.

Health literacy is not solely about what patients know. It is also about the ability of healthcare systems to provide information in ways that are understandable, accessible, and appropriate for informed decision-making.

From Formal Representation to Genuine Influence

The training discussions also highlighted the ongoing challenges surrounding meaningful patient representation.

Limited access to specialised knowledge, lack of time and resources, geographical and social inequalities, and the absence of systematic participation mechanisms can create significant barriers.

At the same time, transparency, independence, and the management of conflicts of interest are essential conditions for credible patient representation.

Strengthening patient involvement in hospitals, scientific advisory bodies, and established healthcare evaluation and decision-making processes is an important step towards a more transparent and inclusive system.

The real challenge is not simply to secure a seat for patients at the decision-making table, but to ensure that they can genuinely influence the decisions being made.

What EUPATI Participation Means for Kapa3

For Kapa3, investing in EUPATI education forms part of a broader effort to connect scientific evidence with the everyday experiences of people living with cancer.

Aristea Archontidou and Despina Chrysostomidou participated in the educational activities and workshops focusing on the critical appraisal of clinical studies and statistical analysis, exchanging knowledge and experiences with patient representatives and professionals from different fields.

The knowledge gained through this experience directly supports Kapa3’s core priorities:

Empowering patients and caregivers.
Strengthening health and digital literacy.
Improving access to reliable and understandable information.
Promoting patient involvement in research.
Encouraging interdisciplinary collaboration and the co-creation of services.
Training associates and volunteers to provide better navigation and support.

This approach is also reflected in the development of MYRTO – Kapa3’s Digital Social Navigator, which uses Artificial Intelligence to facilitate access to evidence-informed information on rights, benefits, and available support services.

Through research, European partnerships, education, and everyday social guidance, Kapa3 seeks to contribute to the development of a more structured and evaluable model of human-centred navigation in oncology care.

For Kapa3, participation in initiatives such as EUPATI represents an investment in the organisation’s collective knowledge and in continuously strengthening its scientific and social contribution.

From Participation to Co-Creation

Kapa3’s participation in the EUPATI Greece Patient Academy reinforces the importance of continuous education and meaningful collaboration between the scientific community and people with lived experience of illness.

Patient involvement should not be reduced to a formal process of representation.

It must be meaningful, evidence-informed, inclusive, and embedded from the earliest stages of research and healthcare service design.

Because patients are not merely recipients of scientific knowledge.

They can and should be active partners in creating it.

At Kapa3, we remain committed to investing in knowledge, education, collaboration, and co-creation.

Because better care is not only designed for people. It is designed with them.

Sources and Further Reading

EUPATI – European Patients’ Academy on Therapeutic Innovation
https://eupati.eu/

Greek Patients’ Association
https://greekpatient.gr/

University of Basel – Patient and Public Involvement: Why and How
https://dkf.unibas.ch/en/scientific-services/patient-and-public-involvement/patient-and-public-involvement-why-and-how/

European Medicines Agency – Patient Experience Data Reflection Paper
https://www.ema.europa.eu/en/scientific-guidelines/patient-experience-data-ped-reflection-paper

Bereczky, T. (2013). The Impatient Patient: A Discussion of Patient Involvement in Novel Forms of Knowledge Production – A Case Study of the European Community Advisory Board on HIV/AIDS.
Socio.hu.
https://socio.hu/uploads/files/english/bereczky.pdf

Kapa3 – Cancer Guidance Centre
https://www.kapa3.gr/

Kapa3 at EPIONI’s 9th “Caring for Caregivers” Event

Putting caregivers at the centre: From psychological burden to integrated support

At the 9th “Caring for Caregivers” event in Thessaloniki, Kapa3 highlighted the need to recognise caregivers as care recipients in their own right.

Thessaloniki, 11 September 2026

In Thessaloniki, Kapa3 contributed with the presentation “Caregiver Burden in Cancer: The Psychological Dimension of Care and the Need for Integrated Psychosocial Support,” delivered by Evangeli Bista and Marilia Barka.

We highlighted the psychological and psychosocial burden of caregiving and the need to recognise caregivers as care recipients in their own right, with access to reliable information, guidance and integrated support.

We also introduced MYRTO, Kapa3’s digital assistant, as an accessible first point of information that complements human support and personalised navigation.

Caring for the caregiver is an essential part of caring for the patient.

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

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.

The Value of Pause: Why We Need to “Disconnect” Even During Treatment

Summer is often associated with the idea of holidays. Images of the sea, travel, and carefree moments fill our daily lives, creating the impression that rest requires a suitcase, a destination, and distance from obligations.

However, for cancer patients who are undergoing treatment, recovering from surgery, or waiting for test results, holidays are often not possible. Medical appointments, treatments, side effects, physical fatigue, and uncertainty about one’s health can make travelling difficult or even impossible.

And yet, the need for rest does not diminish. On the contrary, it often becomes even more important.

Perhaps, then, it is worth redefining what a “holiday” means. Not as travelling somewhere else, but as the ability to pause, even briefly, the relentless cycle of stress, worry, and constant vigilance that often accompanies serious illness. It can be a reminder that life is not only about the disease.

Rest is not a luxury — it is a need

Recent scientific literature shows that people need periods of recovery in order to maintain psychological and physical balance. Recovery is not simply “resting”; it is a process through which the body reduces the physiological and psychological burden caused by chronic stress.

In psychology, the term psychological detachment is used to describe the mental ability to step away from sources of pressure. This means allowing oneself, even for a short while, not to think constantly about what feels overwhelming.

Research by Sonnentag, Binnewies, and Mojza (2010) showed that psychological detachment is associated with lower emotional exhaustion, better mood, and greater resilience in everyday life. Similarly, Fritz and colleagues (2010) found that people who are able to mentally disengage from stress experience higher levels of well-being, energy, and functioning.

Although these studies were mainly conducted among workers, the underlying mechanism applies to every person: when the brain remains in a constant state of alert, it struggles to recover its strength.

In this sense, these small pauses matter not because they make us “forget” the illness, but because they give the brain an opportunity to step out, even temporarily, of a continuous state of alarm.

When illness takes over every thought

The experience of cancer is not limited to treatment days. It often affects everyday life as a whole. Thoughts about tests, medical decisions, bodily changes, work, family, and the future may accompany a person from morning to night.

This constant mental vigilance is exhausting in itself.

International guidelines from the National Comprehensive Cancer Network (NCCN) recognise that psychological distress is a common part of the cancer experience and recommend integrating psychosocial support into overall patient care. Likewise, guidelines from the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO) emphasise that mental health care and quality of life are essential parts of cancer management.

Holidays are not always about travelling

It is easy to believe that rest requires a trip. Yet scientific research suggests that the greatest benefit of holidays does not necessarily come from the destination itself, but from a change of pace and temporary distance from stressors.

Nawijn and colleagues (2010) found that people tend to feel greater well-being shortly before and during holidays, but that this feeling often fades relatively soon after they return.

This finding reminds us of something important: psychological renewal does not depend only on a few days of holiday each year, but also on the small moments of relief that we can create in everyday life.

For someone undergoing treatment, these moments may be even more valuable.

What does it mean to “pause” as a cancer patient?

To pause does not mean ignoring reality or neglecting one’s health. It means allowing oneself to remember, even for a little while, that life is not only about illness.

This may include:

a few quiet minutes on the balcony or in the garden,
a short walk in nature, when possible,
listening to favourite music,
reading a book,
engaging in a creative activity,
spending time with people who make us feel safe,
a few minutes of relaxation or mindful breathing, when appropriate for one’s health condition.

These moments do not change the diagnosis. But they can change the experience of the day.

The importance of quality of life

In modern oncology, quality of life is now considered a key therapeutic goal. Treating the disease is not enough; it is equally important for the person to maintain as much functionality, autonomy, emotional balance, and sense of meaning as possible.

This importance is also reflected in the value framework for cancer treatments developed by the American Society of Clinical Oncology (ASCO). According to this framework, the value of a treatment is not determined solely by its effectiveness, but also by its toxicity, its impact on quality of life, and the personal priorities and preferences of the patient.

This highlights the importance of personalised, patient-centred care, in which the person’s everyday experience is an essential part of the therapeutic process.

Within this perspective, small moments of pause, the continuation of pleasant activities, and connection with what brings joy are not secondary aspects of life. They are meaningful elements that contribute to preserving quality of life. They are not luxuries, signs of weakness, or attempts to avoid reality. They are forms of self-care.

The same applies to family caregivers, who often experience high levels of emotional and physical burden. Taking some time for their own rest is not selfishness; it is a necessary condition for continuing to support their loved one in a meaningful way.

The value of a small pause

The experience of cancer often extends beyond the limits of the disease itself, affecting a person’s self-image, social roles, and daily life. Intense psychological distress and uncertainty can gradually allow the illness to occupy more and more space in life.

In this context, psycho-oncological education appears particularly important. Its aim is to help patients and family caregivers understand the emotional reactions that naturally accompany diagnosis and treatment, develop more effective coping strategies, and actively participate in treatment decisions.

In this way, the sense of control and self-efficacy is strengthened, while also preserving the sense that a person remains something more than their illness.

When health does not allow for travel, it is easy to feel deprived of something important. Yet perhaps the essence of a holiday lies not in the distance we travel, but in the distance we allow ourselves to take from stress.

To “pause” does not mean to stop being a patient. It means allowing oneself, even for a little while, to be something more than the illness.

Perhaps, in the end, the most meaningful holidays are not those that take us far from home, but those that allow us to rest the body, calm the mind, and turn toward ourselves with greater care.

A peaceful sunlit balcony with a chair, a book, a cup, flowers, and an olive tree, illustrating the importance of small moments of rest and self-care during cancer treatment.

By Marilia Barka
Psychology Student
Kapa3 Volunteer

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

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

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

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

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

Risk Factors

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

Suspicious lesions and symptoms

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

Suspected precancerous lesions

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

Symptoms requiring medical assessment

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

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

The importance of early intervention

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

“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.

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.

Newsletter Kapa3| June 2026,From survivorship to quality of life — from information to support — from technology to human-centred care.

May was a month of important developments, scientific outreach and service enhancement for Kapa3. From the new European scientific publication of the MELODIC project and educational participation in international networks, to the development of “Myrto”, the creation of a new Psychological Support Team and support through social and corporate initiatives, Kapa3 continues to bring together knowledge, technology, human care and social action.

Our mission remains focused on equal access for cancer patients and their caregivers to information, rights, services and meaningful support.

1. June: Cancer Survivors Month

June is dedicated to people living with and beyond cancer. Survivorship is not only the end of treatment; it is continuity, adaptation, reintegration, psychosocial support, quality of life and the right to care beyond therapy.

▸ EN: https://www.kapa3.gr/en/june-cancer-survivors-month-title-sep-sitename/

2. Kapa3 Introduces Its New Psychological Support Team

On the occasion of Mental Health Awareness Month and Cancer Survivors Month, Kapa3 introduces its new Psychological Support Team: a safe space for listening, support and empowerment for patients, survivors, caregivers and families.

▸ CONTACT US https://www.kapa3.gr/en/kapa3-introduces-its-new-psychological-support-team/

3. New MELODIC Scientific Publication on the Mental Health of Young Adults with Cancer

Mental health is an integral part of cancer care, particularly for young adults facing the complex challenges of a cancer diagnosis. Kapa3 contributes to the new scientific publication of the European MELODIC project, highlighting the educational needs of healthcare professionals.

▸ READ THE ARTICLE

4. Digital Health and Cancer Survivorship: Kapa3 at the INE-CSC 2026 Conference in Coimbra

Kapa3 participated in the INE-CSC 2026 Conference in Coimbra, contributing to the European dialogue on cancer survivorship, supportive care, digital health and participatory solutions that respond to the real needs of patients and caregivers.

▸ READ THE ARTICL Ehttps://www.kapa3.gr/en/participation-in-ca21152-implementation-network-europe-for-cancer-survivorship-care/

5. Co-creating Myrto: A Digital Health and Rights Navigator for Oncology Patients

Myrto is designed as a digital health and rights navigator — a Patient Empowerment e-Navigator — that goes beyond information provision to guide, support and evolve according to users’ real needs.

▸ READ THE ARTICLE https://www.kapa3.gr/en/myrto-health-navigator-oncology-patients-greece/

6. Learning by Doing: Participation in the European Service Learning 2.0: CoLab Programme

Kapa3 participated in the European programme Service Learning 2.0: CoLab, an initiative connecting academic knowledge with meaningful social action and highlighting collaboration between universities, civil society organisations and community actors.

▸ FIND OUT MOREhttps://www.kapa3.gr/en/learning-by-doing-participation-in-the-european-service-learning-2-0-colab-programme/

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

Through the Match for Good initiative, Alpha Bank and its employees supported Kapa3, strengthening our mission to stand alongside people affected by cancer, their families and caregivers.

▸ FIND OUT MORE https://www.kapa3.gr/en/i-alpha-bank-kai-oi-ergazomenoi-tis-stirizoyn-to-kapa3-kai-tin-isotimi-prosvasi-stin-ypostirixi-ton-ogkologikon-asthenon/

8. 6 Awards for Kapa3 at the 4th Vouliagmeni Summer Crossing: Is There Such a Thing as a “Lonely Race”?

Kapa3 took part in the 4th Vouliagmeni Summer Crossing, sharing a strong message of participation, resilience, empowerment and solidarity. Even when a race seems individual, it does not have to be lonely.

Newsletter closing note

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Support our work and help us continue to provide information, guidance and support to patients and their families.

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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.