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.

find more s41591-026-04554-9

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

find more 499901b523

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

www.linkedin.com/in/maria-garyfalia-marilia-barka-03825a409

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

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

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

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

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

Risk Factors

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

Suspicious lesions and symptoms

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

Suspected precancerous lesions

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

Symptoms requiring medical assessment

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

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

The importance of early intervention

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

The Right to Be Forgotten: A New Era of Dignity for Cancer Survivors

Life after cancer should not be accompanied by lifelong financial exclusion

For many decades, completing cancer treatment did not always mean the end of obstacles for those who had been diagnosed with the disease. Years after their treatment, many survivors continued to face higher insurance premiums, denied insurance applications, and difficulties accessing financial services.A history of cancer could act as a permanent “stigma,” even many years after treatment had ended.

Thus, medical progress and a return to daily life were not always accompanied by corresponding social and economic rehabilitation.

With Law No. 5317/2026, published on July 10, 2026, Greece is moving forward with the legislative enshrinement of the so-called “Right to Be Forgotten” for cancer survivors, in the context of insurance contracts linked to consumer credit agreements. This specific provision is found in Article 16, paragraph 4, of the law.

What the new provision stipulates

The law prohibits the use of personal data related to a consumer’s cancer diagnosis when such data is to be used for an insurance contract linked to a credit agreement and five years have passed since the completion of treatment.

Simply put, once the five-year period has elapsed, a prior history of a cancer diagnosis cannot be used in this specific context as a factor in assessing the insurance contract accompanying the credit agreement. This represents a significant shift: individuals are no longer assessed indefinitely through the lens of a past
illness, but are given the opportunity to move forward with their lives without their previous diagnosis serving as a permanent obstacle.

The four key points of the new entitlement

The Right to be Forgotten does not mean that the diagnosis is deleted from the medical record. It means that, after the prescribed five-year period, data related to the cancer diagnosis may not be used for that specific insurance purpose.

Fourth, special oversight is provided for.

The Personal Data Protection Authority is responsible for enforcing paragraph 4 of Article 16 and possesses the supervisory and auditing powers provided for by the General Data Protection Regulation.

What the New Regulation Does Not Cover

Accurate information is particularly important so that citizens are aware of both their rights and the actual
limits of the protection provided.

The new legislative provision:

does not apply to all forms of private insurance,
does not automatically guarantee the approval of a loan or an insurance application,
does not cover credit agreements secured by a mortgage on real property,
does not cover credit intended for the purchase or retention of rights in real estate,

does not cover professional or business loans, as the law applies to consumers acting outside the
scope of their professional or business activities.

Furthermore, consumer credit agreements already in effect as of November 20, 2026, will, as a general rule, continue to be governed by the previous legal framework until their expiration.
Therefore, the new regulation represents a very important step, but it does not yet provide comprehensive coverage of all the financial and insurance needs of survivors.

From Voluntary Commitment to Legal Enshrinement

The Right to Be Forgotten did not first appear in Greece in 2026. As of March 26, 2024, the Code of Ethics of the Hellenic Association of Insurance Companies has been in effect, to which life insurance companies had adhered.

The Code applied to life insurance policies linked to mortgage, business, or consumer loans, with a maximum total insured amount of 300,000 euros. It provided for a ten-year period following the completion of treatment for those diagnosed as adults and a five-year period for those diagnosed before
turning 18.

The new legislation is particularly significant because protection is no longer based exclusively on the insurance industry’s voluntary commitment. For contracts falling within its scope, the failure to use the oncological diagnosis after the five-year period becomes a legal obligation.

At the same time, there is a need to clarify the relationship between the new law and the existing Code, particularly with regard to mortgage and business loans that are not subject to the new legislative provision.

Additional Safeguards for Consumers

Article 16 includes other important safeguards. When insurance is required for the granting of credit, the creditor must accept equivalent insurance coverage from an insurance company of the consumer’s choice. Choosing a different company must not result in less favorable credit terms.

At the same time, the consumer is given a period of at least three business days to compare insurance quotes, unless the consumer requests in writing that the contract be concluded earlier.

The European Dimension

The Greek regulation transposes Directive (EU) 2023/2225 on consumer credit agreements. The European
Directive requires Member States to establish a time limit beyond which data related to oncological
diagnoses may not be used for insurance policies linked to credit agreements. The European text stipulated that this period must not exceed fifteen years; Greece opted for the significantly shorter period of five years.

This choice has particular social significance. It recognizes that advances in oncology, increased survival rates, and people’s return to family, social, and professional life must be accompanied by corresponding
developments in the law.

When Does It Take Ef ect?

Although Law No. 5317/2026 has already been published, the provisions of Part A, which include the
Right to Be Forgotten, will take effect on November 20, 2026.
Until then, substantial preparation is required on the part of banks, insurance companies, and the relevant
authorities. Clear procedures, understandable information for citizens, appropriate staff training, and an
easily accessible mechanism for submitting reports or complaints are needed.

A Significant Achievement—Not the End of the Journey

The Right to Be Forgotten represents a significant institutional victory for dignity and equality. Cancer
should not be a lifelong social and economic stigma. A person’s medical history should not negate their
right to plan for the future, participate equally in society, and make a fresh start.
At the same time, the new regulation must be viewed as a starting point, not the culmination of our
efforts. The next step must be to extend meaningful protection to more insurance and financial products,
including housing needs, as well as to address the discrimination that continues to occur in the workplace
and other aspects of social life.
Scientific progress has transformed cancer from a terminal diagnosis into an experience of life and
survival for millions of people. Society and the law must follow suit.

Because the Right to Be Forgotten is not a privilege. It is every person’s right not to remain forever
trapped by a past diagnosis—and to move forward into the future without discrimination, without
stigma, and with dignity.

Find more : http://elib.aade.gr/elib/view?

The Active Role of Patient Organizations in Shaping Public Policy: How Our Health Advocacy Ef orts Are Put into Action

At the Cancer Patient Guidance Center, we believe that the voices of patients, their families, and the organizations that represent them must be heard loud and clear where decisions are made.

Improving the quality of life for cancer patients, ensuring access to new treatments, and meeting the needs of caregivers are not just requests but rights that are asserted through organized advocacy. To make this a reality, the right tools are needed.

The new “Guide to Mapping Public Consultation Tools”

As part of the “ENERGO – Toward an Open State” project, HIGGS has created a practical guide that maps the available mechanisms for participation at the local, national, and European levels.

This guide serves as a roadmap for Civil Society Organizations (CSOs), providing a detailed overview of:
• How institutional consultation tools function
• The opportunities for organizations to actively participate in policy-making
• The requirements for accessing these mechanisms
• The challenges and limitations, so that our interventions are well-informed and effective

Why might this be of interest to the beneficiaries of our Center?

Participation in shaping public policy is not an abstract concept. In cancer care, it translates into very specific changes:
1. Equal access to care: advocating for better infrastructure, shorter wait times, and free access to innovative medications.
2. Support for caregivers: establishing leave policies, benefits, and support systems for the people who stand by their side
3. Rights in the workplace: protecting cancer patients from discrimination in the workplace during and after treatment.

Summary & Structure of the Public Consultation Tools Guide

The “Public Consultation Tools Guide” was developed as part of the project “ENERGO – Toward an Open State” (implemented by HIGGS and co-funded by the European Union, the Bodossaki Foundation, and the NGO Support Centre). It is a practical reference tool designed to empower civil society organizations (CSOs) by strengthening their capacity for meaningful, evidence-based participation in public policy-making and strategic advocacy.

The guide is organized into the following sections:

1. Introduction & Institutional Landscape: This section presents the framework for the guide’s development, which was based on research and experiential tools involving dozens of civil society organizations. It analyzes the challenges of the institutional landscape, noting that the main obstacle for organizations is not the absence of tools, but rather the fragmentation, lack of visibility, and complexity of existing mechanisms,

2. National Tools for Public Consultation & Participation: maps and presents in detail the tools available in Greece, such as OpenGov, the KEDE & LocalWatch consultation platform, Vouliwatch, the YPEN Participation Platform, the National Register of Procedures (“Mitos”), Open Council & Crowd Participation, as well as Diafania & POTHEN.

3. European Public Consultation & Participation Tools: presents mechanisms for engagement at the European Union level, such as Have Your Say, the European Citizens’ Initiative (ECI), Consul Democracy, Loomio & Decidim, and others.

4. Tool Selection Guide & Conclusions: Provides consistent evaluation criteria (purpose, implementing body, prerequisites, limitations) so that each organization can select the most appropriate tool based on the objective of its engagement.

About the “ENERGO” Project & the PLATO Program

The “ENERGO: Toward an Open State – Participation, Advocacy, and Empowerment of Civil
Society Organizations” project is being implemented as part of the PLATO program, with HIGGS serving as the implementing partner. The PLATO program (“Protecting democracy, human rights, and the rule of law through an open civic space”) aims to strengthen the fundamental rights and values of the EU in both Greece and Cyprus. It is co-funded by the European Union through the Citizens, Equality, Rights and Values (CERV) program, the Bodossaki Foundation, and the NGO Support Center. The Bodossaki
Foundation serves as the coordinator in partnership with the NGO Support Center.

View and download the guiderZT9sW-Οδηγός Εργαλείων Δημόσιας Διαβούλευσης.

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

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

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

What does “self-care” mean?

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

This is an active commitment to ourselves, which includes:

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

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

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

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

Self-Care in the Cancer Experience

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

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

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

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

Caring for Caregivers

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

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

The Cancer Patient Guidance Center is here for you

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

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

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