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

MYRTO: From Real-World Needs to European Scientific Engagement

MYRTO, the digital Social Rights Navigator developed by Kapa3, is taking an important step from real-world experience to the European scientific community, with two studies accepted for presentation at EONS and ESMO events in 2026.

The first study, “MYRTO as an AI-Supported Navigation Model for Equitable Access to Cancer Care: Real-World Needs from 1,083 Beneficiaries”, will be presented as a poster at EONS19 at ESMO 2026 in Madrid, 24–26 October 2026.

The study draws on the real-world needs of 1,083 Kapa3 beneficiaries, identifying eight key navigation areas: rights and benefits, disability certification and administrative procedures, access to health and social services, transportation and geographical barriers, employment and social protection, health and digital literacy, caregiver support, and referral to human professionals when needed.

The findings highlight that equitable access to cancer care is not only about clinical information. It also depends on people’s ability to find, understand and use reliable information during an exceptionally demanding period of their lives.

From real-world needs to technology evaluation

The second study, “Source-Based Artificial Intelligence (AI) Navigation for Fragmented Nonclinical Cancer-Support Information: Pilot Evaluation of a Human-Supervised System”, has been accepted as an e-Poster at the ESMO AI & Digital Oncology Congress 2026, taking place on 16–18 November 2026.

This study focuses on the operation and evaluation of MYRTO as a source-grounded, human-supervised AI system.

The pilot evaluation drew on 448 authoritative documents and 29,148 indexed excerpts and assessed 100 predefined questions. For all 84 answerable questions, source-supported and actionable responses were generated without modifications following Kapa3 expert review. The system also applied clarification, abstention or redirection mechanisms when evidence was insufficient or when questions involved medical advice or fell outside its intended scope.

Two studies, one shared philosophy

The two studies reflect complementary dimensions of MYRTO: the real-world needs that led to its development and the way technology is being designed to respond to those needs through evidence, clear boundaries and human supervision.

For Kapa3, Artificial Intelligence is not intended to replace human support. Its role is to contribute to more accessible, understandable and trustworthy navigation, while keeping people at the centre.

MYRTO’s presence at two major European scientific events represents another step in bringing Kapa3’s field experience into the European dialogue on equitable access, digital health and the responsible use of Artificial Intelligence.

The MYRTO project is funded by the TIMA Charitable Foundation.

Find more about MYRTO 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.

Supporting Cancer Patients at Home: The Power of Partnerships in Integrated Care — Doctorhomie & Kapa3

The experience of cancer is not confined to the hours spent at a medical appointment, receiving treatment or being admitted to hospital. A large part of the patient’s actual cancer journey unfolds at home: where symptoms and side effects are managed, medications and appointments are organised, information is sought, work and family life need to continue and, very often, a relative or friend takes on the role of caregiver.

This is why today’s discussion about the quality of cancer care cannot stop at the hospital door.

International literature is increasingly moving towards models of integrated, person-centred and multidisciplinary care, in which health is connected with everyday life, the family, the social environment and the wider community [1,2].

A recent review of health and social care models across the Mediterranean highlights several key elements: a holistic approach, collaboration among professionals, individual empowerment and stronger connections between healthcare services, social care and support at home.

When Home Becomes Part of the Care Pathway

For a person living with cancer, needs cannot easily be divided into “medical” and “social”.

On the same day, someone may need guidance on managing a side effect, assistance with an administrative procedure, information about a benefit or entitlement, psychological support, or access to a professional who can provide care at home.

Cancer also affects employment and financial life. In a population-based study of women with breast cancer, the burden of treatment was associated with significant absence from work and, in some cases, withdrawal from employment altogether, while access to paid sick leave and flexible working arrangements appeared to have a protective effect [3].

The need for integrated support is therefore not an abstract concept. It concerns a person’s ability to continue their life as safely and independently as possible.

What Kapa3’s Everyday Experience Tells Us

Data from Kapa3 – Cancer Patient Guidance Centre reflect this complexity within the Greek context.

Between 27 January and 30 July 2026, Kapa3 recorded 1,251 telephone contacts — 614 incoming and 637 outgoing calls — as well as 497 emails sent to beneficiaries.

Through email-based counselling interventions, 241 people submitted more than 300 requests, covering 52 different categories of need.

Exemptions and social benefits represented the largest category, followed by disability certification through KEPA, the Greek Disability Certification Centres, as well as matters relating to pensions, appeals, healthcare coverage and transportation.

At the same time, requests also concerned palliative care, psychological support, private-duty nursing, hospital beds, personal assistants, home-help services, rehabilitation centres and caregiver leave.

These data remind us of something fundamental:

A person with cancer does not simply need more information. They need support in understanding which information applies to their own situation and what the appropriate next step should be.

Caregivers Cannot Remain “Invisible”

Scientific evidence is particularly clear regarding the burden experienced by family caregivers.

Caregivers are often required to organise appointments, transportation and medication, assist with everyday and sometimes even clinical needs, while at the same time providing continuous emotional support [4].

This burden can significantly affect mental health and quality of life. Systematic reviews and meta-analyses have reported high levels of depressive symptoms, anxiety and psychological distress among family caregivers [5–7].

In advanced cancer, existential distress, anticipatory grief, loneliness and death anxiety have also been described [8]. These rates should always be interpreted as findings from screening assessments and not automatically as clinical diagnoses.

At the same time, social support appears to have a protective effect. A recent umbrella review associated higher levels of perceived social support with reduced caregiver burden and better psychological well-being [9].

This is why contemporary dyadic interventions increasingly view the patient and caregiver as an interconnected system rather than as two independent individuals [10].

Integrated patient care is therefore difficult to achieve when the person providing care remains without adequate information, education and support.

From Information to Navigation

This is where patient navigation plays a critical role.

Patient navigation was developed specifically to reduce barriers, facilitate coordination and support continuity throughout the cancer care pathway. A recent systematic review highlights the contribution of patient navigation programmes in addressing practical and organisational barriers during cancer treatment [11].

This is also the principle on which the Kapa3 model has been developed:

not to create yet another isolated service, but to help people connect with the services and resources that already exist.

A patient should not be expected to know in advance whether their question belongs to KEPA, a social service, a healthcare professional, a psychological support service or a home-care provider.

What they need is a trusted point from which to begin.

Myrto: When Technology Supports Navigation

It is precisely this need that has also led to the development of Myrto, Kapa3’s digital assistant.

Its philosophy is not to replace professionals, nor to turn a complex human journey into an impersonal digital process.

The goal is to create an accessible point of reference where people can express their needs and be guided towards appropriate, evidence-based information and the next relevant step.

Digital health can offer significant advantages: remote access to support, flexibility, easier access to information, personalisation and better coordination [12,13].

Among caregivers of people with cancer, eHealth interventions have also been studied as tools that may support self-management, provide assistance and help reduce caregiver burden.

However, technology does not automatically create equality.

Age, limited digital health literacy, sensory or functional limitations and difficulties in accessing technology can create new forms of digital exclusion [14].

This is why the real question is not “digital or human?”

What is needed is a hybrid model, in which technology reduces distance while human support remains available whenever it is needed.

The Strength of the Kapa3–Doctorhomie Partnership

Within this framework, the collaboration between Kapa3 and Doctorhomie, a digital platform for primary and home-based healthcare, takes on a very practical meaning.

The roles of the two organisations are different, yet complementary.

Kapa3 contributes through the identification of needs, reliable information, social guidance and patient navigation.

When an identified need concerns a healthcare service or professional care at home, the ability to connect with an organised home-care platform can become the next important link in the patient’s pathway.

The logic is simple:

identifying the need → reliable information → navigation → appropriate professional or service → support at home → continuity of care

Quality, after all, does not depend solely on whether a service is available.

Studies in primary care highlight reliability, responsiveness, safety and empathy as fundamental dimensions of the patient experience [15].

Building a Network Around the Person

Integrated cancer care does not mean that one organisation must provide everything.

It means that patients should not be left alone to discover who provides what and where they should turn next.

It also means recognising the caregiver, not underestimating the social and psychological dimensions of cancer, using technology to facilitate access rather than create exclusion, and enabling different organisations and professionals to work together around the real needs of each person.

Because the future of cancer care does not lie only in the personalisation of treatment.

It also lies in the personalisation of understanding, navigation and support.

And that care must be able to follow people wherever life continues:

at home, within the family and throughout everyday life.

Learn more about the Kapa3–Doctorhomie collaboration

The collaboration between Kapa3 and Doctorhomie aims to strengthen support for cancer patients and their families through information, research, innovation and improved connections with home-based care services.

Edited by: Evangeli Bista, PhD(c), MBA, MSc, BSc
Co-founder, Kapa3 / Head of Operations and Development

CANCER PATIENT GUIDANCE CENTRE – KAPA3
13 Kosti Palama Street, 11141 Athens, Greece – 3rd Floor
Tel.: +30 210 5221424
Mobile: +30 690 6265170 (09:00–17:00)
Email: info@kapa3.gr

References

Porcel-Gálvez AM, Allande-Cussó R, Mac Fadden I, Ferentinou E, Zafiropoulou M, Lima-Serrano M. Socio-Healthcare for Older People in the Mediterranean Basin: An Integrative Review and Quality Appraisal. Public Health Nursing. 2024. doi:10.1111/phn.13453.
Phillips JL, Currow DC. Cancer as a chronic disease. Collegian. 2010;17:47–50.
Jagsi R, Abrahamse PH, Lee KL, et al. Treatment Decisions and Employment of Breast Cancer Patients: Results of a Population-Based Survey. Cancer. 2017;123:4791–4799. doi:10.1002/cncr.30959.
National Cancer Institute. Support for Caregivers: When Someone You Love Is Being Treated for Cancer. U.S. Department of Health & Human Services, National Institutes of Health.
Akter J, Konlan KD, Nesa M, Ispriantari A. Factors influencing cancer patients’ caregivers’ burden and quality of life: An integrative review. Heliyon. 2023;9(11):e21243.
Pan YC, Lin YS. Systematic review and meta-analysis of prevalence of depression among caregivers of cancer patients. Frontiers in Psychiatry. 2022;13:817936.
Bedaso A, Dejenu G, Duko B. Depression among caregivers of cancer patients: Updated systematic review and meta-analysis. Psycho-Oncology. 2022;31(11):1809–1820. doi:10.1002/pon.6045.
Walbaum C, Philipp R, Oechsle K, Ullrich A, Vehling S. Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta-analysis. Psycho-Oncology. 2024;33(1):e6239.
Cipolletta S, et al. The Role of Social Support in the Experience of Informal Caregivers of Cancer Patients: An Umbrella Review. Psycho-Oncology. 2026. doi:10.1002/pon.70430.
Li L, Zhu C, Yan Q, Li J, Chen Y, Hu X. Effectiveness of dyadic interventions on quality of life for cancer patients and family caregivers: A systematic review and meta-analysis of randomised controlled trials. Journal of Clinical Nursing. 2025;34(8):3383–3405.
Chen M, Wu VS, Falk D, Cheatham C, Cullen J, Hoehn R. Patient Navigation in Cancer Treatment: A Systematic Review. Current Oncology Reports. 2024;26(5):504–537. doi:10.1007/s11912-024-01514-9.
Σκανδαλάκη Ν, Κωνσταντινίδης Θ. Παρεμβάσεις ηλεκτρονικής υγείας για την υποστήριξη φροντιστών ογκολογικών ασθενών. Νοσηλευτική. 2024;63(1):17–26.
Li Y, Li J, Zhang Y, Ding Y, Hu X. The effectiveness of e-Health interventions on caregiver burden, depression, and quality of life in informal caregivers of patients with cancer: A systematic review and meta-analysis of randomized controlled trials. International Journal of Nursing Studies. 2022;127:104179.
Τσόλη Ε, Καυγά Α, Δρακοπούλου Μ, Γκοβίνα Ο, Καλεμικεράκης Ι. Η χρήση της ψηφιακής τεχνολογίας υγείας στους ηλικιωμένους. Αρχεία Ελληνικής Ιατρικής. 2024;41(4):477–484.
Αρμένη ΜΑ, Καυγά Α, Γκοβίνα Ο, Καλεμικεράκης Ι. Αξιολόγηση της ποιότητας των παρεχόμενων υπηρεσιών σε δομές πρωτοβάθμιας φροντίδας υγείας. Αρχεία Ελληνικής Ιατρικής. 2024;41(1):115–121.
Darley A, Coughlan B, Furlong E. People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: A narrative review. European Journal of Oncology Nursing. 2021;54:102030.
Verma R, Saldanha C, Ellis U, Sattar S, Haase KR. eHealth literacy among older adults living with cancer and their caregivers: A scoping review. Journal of Geriatric Oncology. 2022;13:555–562.
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Νικολούδη ΜΕ. Ελληνική εκδοχή του δείκτη ελπίδας Herth σε ογκολογικούς ασθενείς: Ψυχομετρική ανάλυση και μελέτη περίπτωσης. Εθνικό και Καποδιστριακό Πανεπιστήμιο Αθηνών, 2020.

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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Kapa3 joins PERIFORMANCE: From Information to Trust in Cancer Care

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

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

Putting patients and citizens at the centre

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

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

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

From local communities to a national dialogue

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

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

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

What does trust in AI-supported cancer navigation mean?

At the heart of the project lies a fundamental question:

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

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

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

Bringing together science, civil society and lived experience

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

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

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

From information to trust

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

With MYRTO, the question is no longer simply:

“How can we provide more information?”

It is increasingly:

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

Because responsible digital health innovation begins with people.

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