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

Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern oncology is changing at an unprecedented pace. Immunotherapies, antibody–drug conjugates (ADCs), bispecific antibodies and new targeted therapies are creating treatment opportunities that would have been unimaginable only a few years ago.

Cancer treatment is becoming increasingly personalised and tailored to the biological and molecular characteristics of each tumour, while overall survival is being extended for many people living with cancer.

Yet alongside this remarkable scientific progress, a critical question is emerging:

What does it really mean to live longer after — or with — cancer?

A recent Nature Medicine editorial, entitled “Oncology must confront hidden side effects”, highlights precisely this challenge. While cancer drug development is advancing at remarkable speed, the approaches used to record, assess and manage long-term treatment-related toxicities — and their impact on patients’ quality of life — have not evolved at the same pace.

When a “mild” side effect becomes a major burden

Therapeutic success can create a new reality: people are living longer, but some must also manage treatment-related adverse effects for months, years or even for the rest of their lives.

An adverse event classified clinically as low-grade is not necessarily insignificant to the person experiencing it.

A persistent rash, diarrhoea, stomatitis or other symptoms may substantially affect daily functioning, psychological wellbeing and social life when they continue over long periods.

Similarly, some immune-related adverse events associated with immune checkpoint inhibitors can become chronic, persist for years or even be irreversible.

This highlights an important limitation of the Common Terminology Criteria for Adverse Events (CTCAE), which are widely used to classify and grade treatment-related adverse events.

The duration of adverse events is not adequately reflected, while functional and psychological consequences may also remain outside traditional toxicity assessment.

As a result, what may be considered “manageable” according to conventional clinical criteria can feel very different to the patient living with it every day.

Quality of life cannot be an afterthought

A second important issue is the timing of quality-of-life evidence.

In some cases, quality-of-life findings are reported considerably later than the primary results of a clinical trial, and sometimes after a new drug has already been approved.

This means that patients making treatment decisions during the early years of a new therapy may not yet have a complete picture of how it could affect their daily functioning, emotional wellbeing and overall quality of life.

At the same time, the questionnaires and tools used to assess quality of life need to evolve continuously.

And this cannot happen without the direct involvement of patients themselves.

The experiences and priorities of people receiving treatment should form part of how treatment impact is assessed, rather than being treated as information that is added later.

The example of daraxonrasib

The Nature Medicine editorial highlights the pan-RAS inhibitor daraxonrasib as a telling example. The therapy has shown important survival benefits for patients with aggressive RAS-driven advanced pancreatic cancer, a setting in which treatment options have historically been limited.

At the same time, most patients experienced acneiform rash, with diarrhoea and stomatitis also reported as lower-grade treatment-related adverse events.

Full quality-of-life data — including information on daily functioning and emotional wellbeing — were not yet available because follow-up remained relatively short.

This example illustrates a much wider issue.

If we know that a therapy can significantly extend life, but we do not yet fully understand what that life will be like, an essential part of the information is missing from the conversation between patients and their healthcare teams.

This also has direct implications for informed consent.

Whenever evidence is available, patients need information not only about response rates and survival but also about the potential short- and long-term consequences of treatment for their everyday lives.

The same treatment is not experienced in the same way by everyone

The toxicity profile of a treatment is not identical for every patient.

It may vary according to the drug’s mechanism of action, a person’s physical condition, co-existing long-term conditions, genetic background and other individual characteristics.

Particular attention is needed for populations that have historically been excluded from, or underrepresented in, clinical trials, as their experiences of treatment-related toxicity may differ.

The editorial points, for example, to sex-related differences in adverse events associated with immunotherapy and racial disparities in adverse events observed with CAR-T cell therapy.

This makes real-world data particularly important.

Clinical trials remain fundamental to establishing the safety and efficacy of new treatments. However, broader use in everyday clinical practice may reveal treatment effects that were not fully captured in the populations included in initial studies.

One example is the bispecific antibody amivantamab in lung cancer, where the full extent and severity of some skin toxicities became clearer after a broader patient population was exposed to the treatment.

Moving beyond clinical silos

This changing landscape also demands a different approach to the organisation of cancer care.

The adverse effects of modern cancer therapies do not always fit within a single organ system or medical specialty.

Traditional clinical and disciplinary silos can limit the transfer of knowledge needed to identify, monitor and manage emerging toxicities effectively.

The response therefore needs to be interdisciplinary.

Collaborative networks, updated guidance, systematic reporting, dedicated registries and effective knowledge exchange are increasingly important so that new or rare adverse effects can be recognised early and managed appropriately.

Above all, the patient voice must be heard

Perhaps the most important change concerns how we define treatment success itself.

Survival remains a fundamental goal of oncology.

But it cannot be the only one.

We also need to understand whether people can work, move, sleep, eat, participate in family and social life, maintain as much independence as possible and manage the effects of treatment on their everyday lives.

In other words, we need to know not only how much time a treatment adds to life, but also what that time means to the person living it.

Patients should therefore not enter the process only at the end, as recipients of treatment.

Their perspectives need to be incorporated from the design of clinical trials and assessment tools through to post-approval monitoring and the real-world use of new cancer therapies.

From survival to living after — and with — cancer

Progress in oncology is undeniable, and it brings genuine hope.

The next challenge is to ensure that longer survival is accompanied by quality of life, functioning, meaningful information, participation and dignity.

Modern cancer care therefore needs to move beyond asking only:

“How much longer can this patient live?”

and give equal importance to another question:

“How will this person live during that additional time?”

For Kapa3, this discussion goes to the heart of truly person-centred cancer care: care that sees not only the disease and the treatment, but the person, their everyday life, their needs, their choices and the life that continues during and after cancer.

Source and references

Main source:
Nature Medicine. “Oncology must confront hidden side effects.” Volume 32, July 2026. Published online 8 July 2026. DOI: 10.1038/s41591-026-04554-9.

Barron CC et al. Journal for ImmunoTherapy of Cancer. 2023;11.
Gyawali B et al. Lancet Oncology. 2025;26–e89.
O’Reilly EM et al. New England Journal of Medicine. 2026. DOI: 10.1056/NEJMoa2605555.
Unger JM et al. Journal of Clinical Oncology. 2022;40:1474–1486.
Rayapureddy AK et al. Journal of Clinical Oncology. 2026;44.
Hines MR et al. Transplantation and Cellular Therapy. 2023;29:438.e1–438.e16.

find more s41591-026-04554-9

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

New Scientific Publication with the Participation of Kapa3: Cancer Survivorship in the Post-COVID-19 Era

New scientific publication involving the Cancer Patient Guidance Center – Kapa3 highlights the significant psychological, social, and functional challenges that people living with and beyond cancer continue to face following the COVID-19 pandemic.

The article, entitled “Cancer Survivorship After COVID-19: Psychological Burden, Symptom Experience, and Social Support,” was published in the international peer-reviewed journal Medicina. It examines psychological distress, symptom experience, quality of life, and the protective role of social support among people affected by cancer.

What Did the Study Examine?

The research involved 162 adults diagnosed with cancer in Greece during the post-COVID-19 period. Participants completed validated questionnaires assessing depression, anxiety, stress, health-related quality of life, and perceived social support.

The results revealed a substantial and persistent psychological burden:

32.1% of participants reported severe or extremely severe depression.
40.1% reported severe or extremely severe anxiety.
29% reported severe or extremely severe stress.

The overall quality of life of participants was found to be moderate. Emotional and social functioning were among the most affected areas, while fatigue, insomnia, breathlessness, and financial difficulties emerged as some of the most significant challenges in everyday life.

The Close Relationship Between Mental Health and Quality of Life

One of the study’s key findings was the strong relationship between psychological distress and poorer quality of life.

Higher levels of depression, anxiety, and stress were associated with:

poorer daily and functional performance;
lower perceived overall health;
greater symptom severity;
increased difficulty in emotional and social functioning.

The results demonstrate that psychological well-being cannot be separated from the physical, social, and practical experience of cancer.

Social Support as a Protective Factor

At the same time, the study underlines the important protective role of social support.

Support from family members, friends, and other significant people was associated with better overall health and functioning, lower levels of depression, anxiety, and stress, and reduced symptom burden.

The findings show that social connection is not simply an additional element of care. It is a meaningful component of recovery, adaptation, and quality of life throughout the cancer journey.

Cancer Survivorship Does Not End When Treatment Is Completed

The findings reinforce the need to move beyond a model of oncology care focused exclusively on treating the disease.

Cancer survivorship requires a comprehensive, person-centred approach that addresses the physical, psychological, social, functional, and financial dimensions of life with and after cancer.

Routine psychological assessment, early identification of emotional distress, timely referral to psycho-oncology services, rehabilitation, social support, and the meaningful involvement of families and caregivers should become integral parts of standard oncology care.

The study also points to the potential value of telehealth and digital support services in improving access to supportive care. At the same time, it highlights inequalities related to digital literacy, healthcare accessibility, and the ability of all patients to benefit equally from digital services.

The experience of the COVID-19 pandemic demonstrated that effective cancer care must be resilient, accessible, multidisciplinary, and capable of maintaining continuity even during periods of crisis.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kapa3 – Cancer Patient Guidance Center

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

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

OR CALL

2105221424 – info@kapa3.gr

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who Are the Beneficiaries

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

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

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

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

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

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

Law 1043/1980.

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

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

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

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

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

receive a disability pension).

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

Disabled civilians under Law 812/1943.

Disabled civilians under Law 1863/1989.

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

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

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

3. Who Is Exempt from Payment

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

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

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

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

What to Do in Case of Non-Payment

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

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

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

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

You can contact the Kapa3 team

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

Contact Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr

MELODIC Online Symposium: completion of the pilot training phase and strengthening psychosocial cancer care

The European project MELODIC (Mental Health Support for Young Adults with Cancer), in which the Cancer Guidance Center – Kapa3 participates, is being implemented through distinct development phases. The pilot training programme for healthcare professionals is one of its core components, and within this framework, the MELODIC Online Symposium 2026, taking place on 24 April 2026, marks the completion of this educational phase.

The MELODIC project framework

MELODIC is a European project co-funded by the European Union, aiming to strengthen the mental health of young adults living with cancer, as well as to support their families. Through the collaboration of universities, research institutions and healthcare organizations across Europe, the project develops training and support tools for healthcare professionals.

More information about the project and its progress is available on the official Kapa3 website, in the dedicated project section.

The pilot training programme

The pilot training programme focused on enhancing the knowledge and skills of healthcare professionals in providing psychosocial support to young adults with cancer and their families.

As part of the programme, online sessions and contact lessons were delivered, aiming to strengthen interdisciplinary collaboration and support the practical application of tools in everyday clinical practice.

MELODIC Online Symposium 2026

The MELODIC Online Symposium 2026, a two-hour event, brings together participants from all partner countries and includes:

opening presentations from the European Cancer Organisation and Youth Cancer Europe
an “experts by experience” panel, where individuals share their lived experience
a networking panel with healthcare professionals from participating countries
discussion on how training can be applied in clinical practice
a closing session by the project coordination team

From training to clinical practice

A key objective of the MELODIC training programme is to strengthen the psychosocial dimension of cancer care, with particular focus on young adults.

The exchange of experiences among healthcare professionals contributes to more holistic approaches to care and supports the integration of psychosocial support into daily clinical practice.

The role of Kapa3

Kapa3 actively participates in the European MELODIC consortium, contributing to the implementation of the training activities and the dissemination of results in Greece. Through this involvement, the connection between scientific knowledge and the support of cancer patients is further strengthened, promoting the development of practical approaches to psychosocial care.

The MELODIC Online Symposium 2026 marks the transition from the pilot training phase to the next stage of utilizing its outcomes, reinforcing the link between education and real-world application in cancer care.

The Press Release here: PRESS-RELEASE-MELODIC SYMPOSIUM

Text/adaptation: Ifiyenia Anastasiou for Kapa3