Category: Artificial Intelligence

Co-creation in health research: from participation to meaningful influence

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

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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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?

June: Cancer Survivors Month

Survival is a victory — but care must continue

June is dedicated to people living with and beyond cancer. It is a month of recognition, hope and respect for every person who has faced a cancer diagnosis, completed treatment, continues treatment, or lives with cancer as a long-term condition.

Cancer survival is a major victory. However, for many people, it is not the end of the story. Life after cancer often brings a new reality: follow-up appointments, fear of recurrence, fatigue, emotional distress, changes in body image, work-related challenges, financial pressure, family adjustments and the need to rebuild everyday life with confidence and dignity.

Cancer Survivors Month reminds us that survivorship is not only about living longer. It is also about living better.

A cancer survivor is not only a person who has completed treatment and is disease-free. The term also includes people receiving maintenance treatment, people living with cancer as a chronic condition, and those who continue to experience the physical, emotional, social or economic consequences of the disease and its treatment.

In recent years, advances in early diagnosis, targeted therapies, immunotherapy, surgery, radiotherapy and supportive care have increased the number of people living many years after a cancer diagnosis. This is a major achievement for medicine, research and public health. At the same time, it creates a new responsibility: to ensure that survivorship care is organised, person-centred and accessible to all.

For many survivors, the end of active treatment is a moment of relief and gratitude. Yet it may also bring uncertainty. Some people feel that everyone around them expects them to “go back to normal”, while they are still trying to understand what has changed in their body, their emotions, their relationships and their daily life.

The fear of recurrence, anxiety before follow-up tests, persistent fatigue, pain, cognitive difficulties, changes in sexuality, emotional vulnerability and social isolation are real experiences for many people after cancer. These needs should not be underestimated. Survivors need space to speak, reliable information, access to professional support when needed, and connection with communities and organisations that understand their journey.

Long-term follow-up is also essential. Survivorship care should not focus only on recurrence. It should also include prevention, early recognition of late effects, management of treatment-related complications, support for mental health, healthy lifestyle guidance and personalised monitoring according to each person’s cancer type, treatment history, age and individual risk factors.

The message is not fear. The message is awareness, prevention and continuity of care.

Life after cancer is also about rights. It is about returning to work, accessing social benefits, understanding available services, managing financial toxicity, supporting caregivers, protecting dignity and ensuring equal access to care. Survivorship must be seen as a social, psychological and practical issue — not only a medical one.

At Kapa3, we see every day that cancer does not always end with the last treatment. It continues in the questions people ask about their rights, their next steps, their follow-up, their access to benefits, psychological support, work, family life and social reintegration.

This is why people living with and beyond cancer need holistic support. They need information, guidance, psychosocial care, access to rights and services, empowerment and continuity of care. No one should feel alone after treatment. No one should be left to navigate bureaucracy, uncertainty or lack of information without support.

Cancer Survivors Month invites us to change the way we talk about survival. We should not ask only: “Did the person survive cancer?” We should also ask:

Are they living with quality of life?
Do they have access to the care they need?
Do they know their rights?
Do they receive psychological and social support?
Can they return to work and daily life with dignity?
Is there a follow-up plan?
Is there someone to guide them when they do not know where to turn?

Cancer survival is a victory. But the real challenge is to turn this victory into a life with quality, safety, rights, support and hope.

At Kapa3, we continue to stand beside every person living with and beyond cancer. Through information, guidance, empowerment and human-centred support, we believe that care does not stop at treatment.

It continues in life.

Digital Health Technologies in Europe: New European Commission Report Highlights Opportunities and Challenges

Digital health technologies in Europe are a key pillar in transforming care systems, as highlighted in the new European Commission report (published in 2026), titled “Observatory for Digital Health Technologies in Europe”. The report, prepared for the Directorate-General CONNECT (DG CNECT) by Capgemini Invent and IDC, provides a comprehensive overview of the EU27 digital health market, analyzing both the technology ecosystem and its economic impact.

The report is structured in three main sections. The first focuses on the creation of the Digital Health Technologies Observatory, a strategic tool for monitoring adoption, innovation, and investment in the sector. The second part presents the economic analysis of five selected technologies, while the third contains conclusions and policy recommendations.

The analysis draws on extensive data, including pan-European surveys of healthcare providers and technology companies, expert interviews, mapping of hundreds of providers, and analysis of tens of thousands of investment records. The findings depict a rapidly growing yet fragmented digital health market in Europe.

Artificial intelligence plays a central role in this transformation, with 94% of healthcare providers already adopting or planning to integrate it. Technologies such as Clinical Decision Support Systems (CDSS), automated medical imaging analysis, and digital mental health platforms are highlighted as particularly important for improving care quality and enhancing health system efficiency.

The economic benefits are substantial. CDSS are estimated to enable savings of up to €252 billion over a decade, while automated medical imaging analysis could save up to €192 billion. Similarly, digital mental health platforms support early intervention and reduce the burden on healthcare services, providing significant social and economic benefits.

The report also identifies critical challenges, such as market fragmentation, interoperability issues, and dependence on non-EU providers in strategic areas. Additionally, issues related to digital skills, regulatory frameworks, and equitable access continue to affect the widespread adoption of these technologies.

To address these challenges, the report recommends measures such as strengthening interoperability, supporting small and medium-sized enterprises, promoting innovation in cutting-edge fields (such as AI and genomics), and integrating principles of sustainability, accessibility, and equity.

The positioning of digital health technologies in Europe as a key pillar for the future of care systems is closely linked with initiatives developed at the national level. In this context, Kapa3 invests in digital tools that enhance information, accessibility, and empowerment of oncology patients, such as the “Myrto” Health Navigator. You can read more about it here.

As Europe seeks to build a more resilient and inclusive health system, leveraging digital technologies emerges as a decisive factor in improving patient quality of life and the effectiveness of healthcare services.

Sources:

Text/Adaptation: Ifiyenia Anastasiou for Kapa3

Kapa3 in Dialogue on Artificial Intelligence and Ethical Regulation

On 18 December 2025, Kapa3 participated in the event “Artificial Intelligence: Towards Regulation or Overregulation?”, on the occasion of the online monograph release “The European Regulation on Artificial Intelligence (EU/2024/1689, Artificial Intelligence Act, AI Act): A First Constitutional-Ethical Perspective” by Fereniki Panagopoulou, an initiative of Syntagma Watch. Representing Kapa3 were co-founder of Kapa3, Evangelia Bista, and legal advisor of Kapa3, Zoi Thanopoulou, presenting the organization’s position and concerns regarding artificial intelligence.

During the discussion, Ms. Bista emphasized that the implementation of new technologies cannot ignore the functioning of the public sector: “What hardware will the new accounting system run on? Which government mechanisms will support it, and within what political-administrative culture? Can hi-tech solutions operate effectively in outdated systems with anachronistic practices?” She also highlighted the philosophical and ethical dimensions of AI: “How are intelligence and consciousness connected, and who decides what we can use and how?“

In addition, Kapa3’s core concerns regarding AI integration in healthcare were discussed: the need for transparency and accountability in all uses of digital tools, the protection of patients and the public from algorithmic discrimination, training healthcare professionals for safe and responsible use of technological solutions, and the importance of developing infrastructures and processes that ensure system interoperability and reliability. These concerns are reinforced by Kapa3’s experience in digital patient guidance and the development of support tools with ethical and legal awareness.

Author Fereniki Panagopoulou presented the main points of her monograph, focusing on the practical application of the AI Act: clearly defining responsibilities and limitations in algorithm use, ensuring transparency in AI-driven decisions, and protecting vulnerable groups. She also stressed the importance of aligning technology with ethical principles so that innovation serves citizens rather than efficiency alone. The monograph is available here.

The event highlighted the complex nature of AI-related issues, combining technical, legal, and ethical approaches. Kapa3 reiterated its commitment to contributing to public dialogue on artificial intelligence, protecting citizens’ rights, and promoting the safe and responsible use of digital tools in healthcare, for the benefit of patients and healthcare professionals.

Text/adaptation: Ifiyenia Anastasiou for Kapa3