Kapa3 at the 13th Panhellenic Oncology Nursing Symposium: From Knowledge to Practice, with People at the Centre of Care

Three scientific contributions highlighting healthcare professionals’ educational needs, the financial burden of cancer, and the importance of patient navigation in comprehensive oncology care.

30 October – 1 November 2026 | Montana Hotel, Karpenisi, Greece

Kapa3 – Cancer Guidance Centre will participate in the 13th Panhellenic Oncology Nursing Symposium, organised by the Oncology Nursing Sector of the Hellenic Nurses Association (ESNE), taking place from 30 October to 1 November 2026 in Karpenisi, Greece.

Under the central theme “Driving Change, Creating Hope,” this year’s Symposium will provide an important opportunity for scientific exchange, interdisciplinary collaboration and discussion on the future of oncology nursing and comprehensive cancer care.

Kapa3’s participation will include three confirmed scientific contributions, bringing together healthcare professional education, the socioeconomic consequences of cancer and the role of structured patient navigation in improving access to care.

Although these topics address different dimensions of oncology, they share a common objective: to explore how scientific knowledge can be translated into meaningful, accessible and measurable improvements in the care provided to people affected by cancer.

1. Educational Needs of Healthcare Professionals: From Knowledge Acquisition to Meaningful Change

Saturday, 31 October 2026 | 17:30–19:00

Open Scientific Discussion

“Educational Needs of Healthcare Professionals: A Critical Issue for Contemporary Oncology Care”

Moderator: Evangeli Bista, PhD(c), MBA, MSc, BSc, Co-founder of Kapa3 – Cancer Guidance Centre.

Modern oncology care is evolving rapidly. New therapeutic approaches, personalised care, increasing psychosocial needs, digital transformation and the integration of Artificial Intelligence are fundamentally changing the knowledge and competencies required of healthcare professionals.

However, participation in educational activities does not automatically translate into improvements in professional practice.

This scientific discussion will address a central challenge in continuing professional education: how to move beyond the delivery of scientific information towards the effective assimilation, application and evaluation of knowledge.

The discussion will follow a structured pathway:

Identifying Needs → Education → Knowledge Acquisition → Assimilation → Application → Evaluation → Improved Care

Particular attention will be given to absorptive capacity, knowledge translation, organisational learning, interdisciplinary collaboration and the development of professional and digital competencies.

An important dimension of the discussion concerns the organisational environment in which healthcare professionals are expected to apply their knowledge.

Leadership, trust, organisational culture, staffing, mentoring, access to information and opportunities for continuous learning can either facilitate or hinder the translation of scientific knowledge into everyday clinical practice.

The discussion will bring together the following participants:

Ourania Govina
Theocharis Konstantinidis
Giorgos Kapetanakis
Theodora Kappou
Maria Lavdaniti
Aikaterini Manousou
Aikaterini Papadimitriou
Dimitrios Papageorgiou

Drawing on different academic, clinical, professional, managerial and patient-centred perspectives, the discussion aims to identify shared priorities for continuing education in contemporary oncology care.

The central question is:

How can we move from delivering knowledge to ensuring its meaningful assimilation and practical application, while developing healthcare professionals and organisations capable of continuous learning and measurable improvement?

2. Accessibility in Cancer Care: The Intersection of Health, Society and Economy

Scientific Roundtable

“Access to Healthcare Services for Patients with Malignant Neoplastic Disease: A Health–Society–Economy Perspective”

Session Chairs: Ioanna Tsatsou and Maria Lavdaniti.

As part of this roundtable, Evangeli Bista will deliver a presentation entitled:

“The Financial Burden of Cancer on Patients and Their Families”

A cancer diagnosis is not solely a medical event. It frequently brings substantial social and financial consequences that affect both patients and their families.

Loss or reduction of income, frequent travel for treatment, additional healthcare-related expenses, caregiving responsibilities and difficulties maintaining employment can significantly affect quality of life and access to appropriate care.

The concept of financial toxicity describes the economic hardship and distress associated with cancer and its treatment.

Financial toxicity may contribute to psychological distress, financial insecurity, reduced social participation and inequalities in access to healthcare and supportive resources.

Drawing on Kapa3’s experience in social guidance, patient navigation and support for people affected by cancer, the presentation will explore financial burden as an essential dimension of person-centred oncology care.

The roundtable will also include:

Georgios Manomenidis: “Social Determinants of Access to Oncology Care”
Maria Lavdaniti: “The Role of Nurses and the Interdisciplinary Team in Reducing Barriers to Access”

Together, these contributions will examine accessibility from complementary perspectives, highlighting the complex relationship between health services, socioeconomic conditions and interdisciplinary collaboration.

Equitable access to care depends not only on the availability of healthcare services, but also on people’s actual ability to access and use them.

3. The Role of Patient Navigation in Oncology Care: A Systematic Review

Oral Scientific Presentation

“The Role of Patient Navigation in Oncology Care: A Systematic Review”

Authors:

Maria-Garyfallia Barka
Psychology student, Panteion University of Social and Political Sciences; Volunteer, Kapa3 – Cancer Guidance Centre.

Evangeli Bista
Social Scientist, PhD(c), MBA, MSc, BSc; Co-founder, Kapa3 – Cancer Guidance Centre.

This scientific contribution falls within the field of psychosocial oncology care and examines the role of structured patient navigation in improving continuity, coordination and accessibility throughout the cancer journey.

Cancer diagnosis and treatment are associated with multiple needs extending beyond clinical management.

Patients and their families often require assistance in understanding medical and administrative information, navigating healthcare services, accessing social rights and benefits, managing practical difficulties and obtaining psychosocial support.

The systematic review examines international scientific literature published between 2015 and 2026, drawing on searches conducted in PubMed and Embase.

The review focuses on patient navigation, psychosocial support, counselling and care coordination, exploring their contribution to comprehensive oncology care.

In addition, practice-based data collected through Kapa3’s activities are considered in order to connect international evidence with the needs of patients and caregivers in the Greek healthcare and social support context.

The findings highlight the importance of organised, interdisciplinary navigation models involving healthcare professionals, social workers, psychologists and other relevant professionals.

Patient navigation is not simply the provision of information.

It is a structured process of identifying needs, supporting decision-making, facilitating access to appropriate services and helping patients navigate the multiple challenges arising throughout their cancer journey.

The presentation reinforces the importance of developing coordinated and person-centred support pathways that address medical, psychological, social and practical needs.

From Scientific Research to Kapa3’s Everyday Practice

Kapa3’s three scientific contributions reflect the organisation’s commitment to connecting research, professional education and social support with the lived experiences of people affected by cancer.

The education of healthcare professionals, the recognition of cancer-related financial hardship and the implementation of structured patient navigation are not isolated priorities.

They represent interconnected dimensions of a broader approach to oncology care.

Effective professional education can strengthen the ability to identify patient needs. Recognition of socioeconomic barriers can improve the relevance of supportive services. Structured navigation can help connect patients with appropriate professionals, resources and care pathways.

Together, these elements contribute to a model of healthcare that is more coordinated, equitable and responsive to people’s real needs.

This approach is also reflected in the development of MYRTO – Kapa3’s AI-Supported Digital Social Navigator, an innovative initiative designed to improve access to evidence-informed information about social rights, benefits, administrative procedures and available support services.

MYRTO is developed in collaboration with SimasiaAI, with the valuable support of the TIMA Charitable Foundation.

The initiative demonstrates Kapa3’s commitment to combining digital innovation with human-centred guidance, health literacy, social inclusion and responsible use of Artificial Intelligence.

Driving Change, Creating Hope

For Kapa3, participating in the 13th Panhellenic Oncology Nursing Symposium represents another opportunity to strengthen scientific dialogue, share knowledge and develop collaborations between healthcare professionals, academic institutions and civil society organisations.

Patients’ lived experiences provide valuable insights into the challenges that healthcare systems must address.

When these experiences are systematically documented, examined through scientific research and incorporated into professional education and service development, they can become a powerful source of meaningful change.

Scientific progress creates real value when it translates into better everyday experiences, fewer barriers and more effective support for people living with cancer.

At Kapa3, we remain committed to advancing a model of oncology care that recognises the full complexity of patients’ needs and supports people throughout every stage of their cancer journey.

Because care does not end with treatment. It embraces the whole of life.

Symposium Information

13th Panhellenic Oncology Nursing Symposium
“Driving Change, Creating Hope”

Dates: 30 October – 1 November 2026
Venue: Montana Hotel, Karpenisi, Greece

Organiser: Hellenic Nurses Association (ESNE) – Oncology Nursing Sector

Official event website:
https://oncologynursingcongress.esne.gr/

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

Explore MYRTO – Digital Social Navigator
https://kapa3-cag-rag-hybrid-deploy.onrender.com/

Online Webinar Digital Transformation in the Public Sector and Civil Society.Convergence or divergence and proposals

Kapa3 – Cancer Guidance Centre, in collaboration with Collège René Descartes, invites you to an online webinar entitled:

“Digital Transformation in the Public Sector and Civil Society: Convergence or divergence and proposals”

📅 Date: Friday, 30 October 2026
🕡 Time: 18:30 – 20:30
💻 Attendance: Online
🎫 Participation: Free of charge

Digital transformation is now a key factor shaping how public organisations operate, how services are delivered to citizens, and how social support and participation initiatives are developed. Although important progress has been made, the transition to a more digital environment does not unfold in the same way across all organisations and social groups.

This webinar aims to open a meaningful dialogue between theory and practice, examining digital transformation from both the perspective of the Public Sector and that of Civil Society. Special emphasis will be placed on:

the changes brought by digitalisation in the way organisations function,
the relationship between the state, organisations and citizens,
the opportunities created by digital technologies,
the challenges arising from unequal access to and use of digital tools,
and the need to develop sustainable, human-centred and inclusive digital solutions.

Main question of the discussion

Does digital transformation lead to greater convergence between the state, organisations and citizens, or does it create new forms of divergence and inequality?

Who should attend

The webinar is addressed to:

public sector professionals and employees,
representatives of civil society organisations,
professionals involved in the design or implementation of digital services,
management and human resources professionals,
social and humanitarian service professionals,
educators, researchers, academics and students,
and, more broadly, anyone interested in the relationship between technology, public administration and society.

Main topics

The webinar programme includes themes related to:

digital transformation as organisational change,
innovation in public administration,
practical experiences and good practices from the public sector,
inclusion, accessibility and social needs,
the relationship between the public sector and civil society,
artificial intelligence, data and new opportunities,
and proposals for a meaningful, sustainable and human-centred digital transition.

Speakers

The webinar features:

Anastasia Tsartara, Head of Sector “Internal Affairs, Digital Governance, Justice and Institutions”, General Secretariat for Coordination of the Presidency of the Government
Dr Emmanuel Alexandrakis, Adjunct Professor – Strategic Development and Internationalisation Advisor, Athens University of Economics & Business
Evangeli Bista, Cofounder / Strategic Partnerships Lead, Kapa3 – Cancer Guidance Centre
Eirini Gkoni, Associate, GRNET S.A.
Dimitris Papadakis, Co-Founder & Head of Sales, SimasiaAI
Aristea Archontidou, MSc in Health Policy & Planning, Kapa3 Associate.

Certificate of attendance

All participants will receive a certificate of attendance issued by Collège René Descartes and Kapa3.

Registration

Participation is free. You may register through the official form:
🔗 https://cnam.gr/webinar_digital_transformation_public_management/

MYRTO evolves: from information to meaningful navigation

The new version of MYRTO, Kapa3’s digital assistant for people affected by cancer and their caregivers, is now live.

This update is more than a technical upgrade. It represents another step towards a different model of digital support: moving from simply providing information to supporting understanding, guidance and navigation.

For people facing cancer, the challenge is not always a lack of information. Very often, the real difficulty is understanding which information applies to them and what they need to do next.

From information to the next step

The cancer journey involves much more than diagnosis and treatment. Patients and families may also need to navigate social rights and benefits, disability assessment, transportation, employment issues, psychosocial support and communication with multiple health and public services.

Information may be available, but it is often fragmented, complex or difficult to turn into action.

This is where navigation becomes essential.

It means supporting people to access, understand, evaluate and use the information they need.

MYRTO was developed with this principle in mind: transforming complex and fragmented information into guidance that is easier to understand and act upon.

What is new in MYRTO

The renewed version offers a more direct and accessible user experience.

Users can interact by text or voice, listen to responses, choose between Greek and English, and adjust text size. Suggested topics also help people who may not know how to begin or how to formulate their question.

Particular attention is given to the sources behind the information. MYRTO follows a source-grounded and human-supervised AI approach: Artificial Intelligence supports the retrieval and organisation of information, while reliability, transparency and human oversight remain central to its design.

Technology does not replace people

MYRTO is not a doctor and does not provide personalised medical advice. It does not replace social workers, psychologists, nurses or other healthcare professionals.

Its role is to reduce complexity, support orientation and help people move closer to the appropriate information, service or human support.

The same approach applies to caregivers, who often become care coordinators, information managers and navigators of rights and services. MYRTO is also designed with their needs in mind, recognising caregivers as an essential part of the cancer journey.

Accessibility, trust and data protection

At Kapa3, we believe that digital innovation is meaningful only when it remains accessible and inclusive.

For this reason, the renewed MYRTO places emphasis on plain language, voice interaction and features that can support people with different levels of digital and health literacy.

Users are also informed about the processing of their data and the use of Artificial Intelligence, with separate consent choices and the possibility to request data deletion.

Trust in a digital health tool is not only about the answers it provides. It is also about how it works, which sources it relies on and how it respects the people who use it.

“What do I need to do next?”

Perhaps this single question best captures the philosophy behind MYRTO:

“What do I need to do next?”

A person facing cancer should not have to know in advance which organisation is responsible, where the right information is located or which administrative process needs to be followed.

They should be able to express their need and receive guidance that is reliable, understandable, accessible and human-supported.

This is the direction of the renewed MYRTO.

From information to understanding.
From understanding to navigation.
And from navigation to the next step.

Find more :

https://kapa3-cag-rag-hybrid-deploy.onrender.com

Kapa3 at HDHC: Bringing the Patient Perspective to Digital Health

Networking, knowledge exchange and new opportunities for collaboration

The monthly meeting of the Hellenic Digital Health Cluster (HDHC) provided another valuable opportunity for networking, knowledge exchange and the exploration of new collaborations within the rapidly evolving digital health ecosystem.

During the meeting, representatives of three new members — Kapa3 – Cancer Guidance Center, Reformer Business Optimization, and ERGOBYTE — introduced their work, expertise and capabilities to the wider HDHC community.

Kapa3: From real patient needs to the design of solutions

Kapa3 was represented by Aristea Archontidou, who presented the organisation’s work and the experience gained through its daily support of people affected by cancer and their caregivers.

A central focus of the presentation was one of the most significant challenges people face following a cancer diagnosis: fragmented information.

Alongside their treatment journey, patients and their families are often required to navigate a complex range of social, insurance, employment and administrative issues. Finding the right information across multiple systems and public sources can become an additional burden during an already demanding period.

This challenge is particularly important for people diagnosed with cancer while still of working age. Support therefore extends beyond treatment itself and includes helping people understand and exercise their rights, maintain their social and professional lives, and access the services and benefits available to them.

The numbers reflect a real need

Kapa3’s daily experience demonstrates the scale and diversity of these needs.

Between January and July 2026, Kapa3:

handled 1,251 telephone contacts,

sent 497 emails to beneficiaries,

managed 306 requests from 241 individuals,

covering 52 different categories of need, including disability certification, social benefits and employment rights.

Behind every number is a person seeking timely, understandable and reliable guidance.

These data reinforce the need for services and tools that do not simply provide more information, but help people find, understand and use the information that is relevant to their individual situation.

MYRTO AI: Technology supporting social navigation

A key part of the presentation was dedicated to MYRTO AI, the digital Social Rights Navigator being developed by Kapa3 for people affected by cancer and their caregivers.

MYRTO is designed to provide access to information and guidance 24 hours a day, seven days a week, in Greek and English, while also supporting voice interaction.

Developed with the support of the TIMA Charitable Foundation, MYRTO builds on Kapa3’s field experience and on the real questions and needs identified through the organisation’s direct work with patients and caregivers.

Its purpose is not to replace human support. Instead, technology is being developed as an additional tool for timely, reliable and more accessible navigation, helping people understand available options and identify the appropriate pathways for further support.

From field experience to digital innovation

This is where Kapa3’s participation in HDHC becomes particularly relevant.

Digital health is not only about developing new technologies. It is also about ensuring that these technologies respond to the real needs of the people who are expected to use them.

Through its daily interaction with patients and caregivers, Kapa3 can bring the end-user perspective into the digital health ecosystem and contribute to assessing the usability, accessibility, comprehensibility and real-world value of emerging digital tools.

In this way, experience from the field can become an integral part of the innovation and design process.

European engagement and new synergies

The presentation also highlighted Kapa3’s growing European activity through its participation in projects and initiatives such as e.Health4Cancer, MELODIC, MOVE-ON and PERIFORMANCE, alongside its continued efforts to develop new partnerships through European programmes and networks.

Participation in HDHC creates another meeting point between civil society, research, technology and entrepreneurship, opening new possibilities for collaboration focused on digital health and people-centred innovation.

HDHC: Building bridges for digital health collaboration

The monthly meeting once again demonstrated the value of connecting organisations, research bodies and companies that bring different areas of expertise to a shared digital health ecosystem.

For Kapa3, participation in such a network is not only an opportunity for networking and knowledge exchange. It also provides a platform for advancing a principle that lies at the heart of our work:

digital innovation creates real value when it starts with people’s needs and returns to them in the form of meaningful, accessible and trustworthy support.

From access to continuity of care: when navigation becomes part of the solution

Why health systems need pathways, not just pilots

A test is not treatment. A referral does not necessarily mean that a person will reach the care they need. And a successful pilot does not, by itself, mean that a health system works for everyone.

This is the central message of a recent article by Gaurav Ghewade for the World Economic Forum, “Why healthcare systems need pathways, not just pilots.” The key question is no longer simply whether people can enter a health system, but whether the system can support them throughout the journey that follows.

In 2023, around 4.6 billion people worldwide were still not fully covered by essential health services. At the same time, chronic conditions, including cancer, require much more than a single intervention. They demand continuity, repeated contact with services, follow-up and coordinated support.

The critical question therefore becomes:

What happens after the first step?

Does a person know where to go next? Do they understand the procedures they need to follow? Are they aware of the rights and benefits available to them? Can they identify the appropriate services? Is there a clear pathway, or are they left to navigate a complex system on their own?

For people affected by cancer, the journey extends far beyond diagnosis and treatment. It can also involve administrative procedures, social and employment rights, financial and insurance benefits, access to social services, psychosocial support, caregiver needs and the return to everyday life.

This is why navigation is becoming an essential part of person-centred support.

From information to action: MYRTO

This is also the space in which MYRTO – Kapa3’s Digital Social Rights Navigator is being developed.

MYRTO does not replace doctors or healthcare professionals and does not provide treatment decisions. Its purpose is to help people affected by cancer and their caregivers access reliable and understandable information, better understand their social rights and available benefits, identify relevant services and move towards the next practical step in their journey. Kapa3 has positioned MYRTO within a broader approach to digital navigation, social accessibility and patient empowerment.

Because access is only the beginning.

What truly matters is ensuring that no one gets lost between the steps of their journey.

The development of MYRTO is supported by the TIMA Charitable Foundation, Founding Sponsor of MYRTO.

Source

Gaurav Ghewade, Why healthcare systems need pathways, not just pilots, World Economic Forum, 21 August 2026.

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.

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Κapa3 at IEEE CBMS 2026 | AI for Equitable Oncology Information

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

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

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

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

The paper, entitled:

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

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

From access to information to meaningful patient empowerment

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

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

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

The key question is therefore not simply:

“How much information do we provide?”

but rather:

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

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

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

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

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

In oncology, this is especially important.

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

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

Artificial Intelligence as a tool for equity

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

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

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

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

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

Technology alone, however, does not create equity.

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

Designed with patients, for patient needs

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

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

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

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

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

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

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

AI should strengthen, not replace, human relationships

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

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

It should help strengthen their communication.

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

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

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

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

From information to trust

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

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

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

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

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

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

Publication details

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

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

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

DOI: 10.1109/CBMS69103.2026.00302

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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.

A Calm Summer Begins with Proper Preparation Proactive Care Planning, Mental Decompression and Digital Support

Proactive Care Planning, Mental Decompression and Digital Support

Summer is a valuable opportunity for rest, renewal and quality time with the people we love. For people living with or after a cancer diagnosis, as well as for their caregivers, the possibility of enjoying a few days away from everyday life can contribute meaningfully to physical and mental well-being.

When a person’s health condition allows it, and with the agreement of the treating physician, even a short break can have a beneficial effect, enhancing quality of life and supporting the sense of returning to everyday life (Lim et al., 2022).

The quality of life of people living with or after a cancer diagnosis does not depend solely on medical treatment. Mental well-being, social support, optimism and resilience are equally important factors that facilitate adaptation to the disease and contribute to patients’ overall well-being (Ruiz-Rodríguez et al., 2022). At the same time, current guidelines underline the importance of integrated and personalised care, as well as continuous support for people living with or after cancer at every stage of their journey (Hart et al., 2024).

However, the peace of mind associated with holidays does not begin on the day of departure. It begins much earlier, through proper preparation. Practical pending issues, administrative procedures or concerns about unexpected events during the holidays can increase stress and reduce the feeling of safety. By contrast, proactive care planning allows patients to organise what is needed in advance, so that they can devote their time to rest rather than obligations.

Timely renewal of medical certificates, ensuring an adequate supply of medication for the entire period of absence, communicating with the treating physician when necessary, and keeping essential medical documents in an easily accessible format are simple but important steps of preparation. In this way, continuity of care is safeguarded, while the uncertainty that often accompanies travel is reduced.

Reliable information and timely support are key pillars of modern oncology care. When people know where they can turn and have easy access to trustworthy information, they feel safer, their autonomy is strengthened and the management of daily life becomes easier (Ruiz-Rodríguez et al., 2022; Hart et al., 2024).

In today’s world, digital tools can complement support services by facilitating access to reliable information wherever the patient may be. In this direction, Kapa3 is moving forward with the development of Myrto, the digital social navigator, designed to provide direct access to information on social rights, available services and useful guidance. In this way, it facilitates access to the organisation’s services and reliable information, contributing to better preparation before and during holidays.

For all of us at Kapa3, technology does not replace human care; it complements it. It is another means of facilitating access to trustworthy information and available services, while the Social Service and Psychological Support Service of Kapa3 remain the core pillar of holistic support for people living with cancer and their families.

Let us remember that care does not stop when holidays begin. It continues through small but meaningful acts of preparation, proper information and timely planning. Because, many times, the greatest luxury of a holiday is not the destination itself, but the feeling that we can enjoy our moments with calmness, safety and trust.

The Social Service and Psychological Support Service of Kapa3 wish everyone a safe, peaceful and refreshing summer, with health, strength and beautiful moments.

Before Leaving for Your Holidays…

✔️ Make sure you have an adequate supply of your medication for the entire period of your absence.

✔️ Check whether there are any medical certificates, prescriptions or other administrative pending issues that need to be settled in time.

✔️ Discuss with your treating physician any special instructions related to travel or movement.

✔️ Keep with you the necessary medical documents and important contact details.

✔️ Find out about available support services and make use of the Kapa3 App, so that you have easy access to useful information wherever you are.

References

Hart, N. H., Nekhlyudov, L., Smith, T. J., Yee, J., Fitch, M. I., Crawford, G. B., et al. (2024). Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations. JCO Oncology Practice, 20(9), 1160–1172. https://doi.org/10.1200/OP.23.00716

Lim, J. H. C., Keenan, C., & Flaherty, G. T. (2022). All My Life to Live: Travel Health Benefits and Risks for Cancer Survivors. Journal of Travel Medicine, 29(5), taac069. https://doi.org/10.1093/jtm/taac069

National Comprehensive Cancer Network. (2024). NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®): Survivorship. Version 2.2024. Plymouth Meeting, PA: National Comprehensive Cancer Network.

Ruiz-Rodríguez, I., Hombrados-Mendieta, I., Melguizo-Garín, A., & Martos-Méndez, M. J. (2022). The Importance of Social Support, Optimism and Resilience on the Quality of Life of Cancer Patients. Frontiers in Psychology, 13, 833176. https://doi.org/10.3389/fpsyg.2022.833176

World Health Organization. (2022). World Mental Health Report: Transforming Mental Health for All. Geneva: World Health Organization.

Official Access Links

Hart et al., 2024 — MASCC-ASCO Standards:
https://ascopubs.org/doi/10.1200/OP.23.00716

Lim et al., 2022:
https://doi.org/10.1093/jtm/taac069

NCCN Clinical Practice Guidelines in Oncology: Survivorship:
https://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf

Ruiz-Rodríguez et al., 2022:
https://doi.org/10.3389/fpsyg.2022.833176

WHO World Mental Health Report:
https://www.who.int/publications/i/item/9789240049338

Marilia Barka
Psychology Student
Kapa3 Volunteer