Co-Creation Archives

Kapa3 at EUPATI Greece: From Knowledge to Meaningful Patient Involvement in Research

Empowering patient representatives through education, recognising the value of lived experience, and promoting co-creation in health research and policy.

21–23 September 2026 | EUPATI Greece Patient Academy

Kapa3 – Cancer Guidance Centre, represented by its associates Aristea Archontidou and Despina Chrysostomidou, participated in the three-day educational programme of the EUPATI Greece Patient Academy, organised by the Greek Patients’ Association from 21 to 23 September 2026.

This participation reflects Kapa3’s ongoing commitment to strengthening scientific knowledge, health literacy, and the skills of its associates and volunteers, with the aim of providing more meaningful support and representation for people living with cancer.

At a time when clinical research, the development of new treatments, and health technologies are continuously evolving, patient involvement is becoming increasingly important.

However, one critical question remains:

Are patients genuinely involved in shaping the decisions that affect them, or are they still too often limited to the role of passive recipients?

The EUPATI training highlighted the importance of moving beyond simply providing information towards active, informed, and meaningful patient involvement in research, the evaluation of therapeutic interventions, and the design of healthcare services.

EUPATI: Scientific Knowledge and the Empowerment of Patient Representatives

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a European initiative that promotes the education and empowerment of patients and their representatives, enabling them to participate more effectively and confidently in medicines research and development and discussions concerning innovation in healthcare.

The Greek educational programme included presentations, interactive workshops, and opportunities to exchange knowledge and experiences among healthcare professionals, researchers, and patient representatives.

Over the three days, participants explored several key topics, including:

Critical reading and understanding of clinical studies.
Interpretation of statistical data and research findings.
The regulatory framework governing clinical trials and medical devices.
Ethical considerations in research.
The organisation and design of clinical trials.
Patient representation in scientific advisory bodies and decision-making processes.

The practical approach was particularly valuable, as participants were encouraged to analyse scientific data, raise questions, and identify the challenges patients may face when trying to understand a clinical study or evaluate available treatment options.

The programme reinforced an essential principle: scientific knowledge should not remain the exclusive domain of specialists. It should be accessible and understandable to those who are expected to participate in decisions affecting their health and lives.

From Scientific Information to Critical Understanding

One of the main areas addressed during the programme was the critical appraisal of clinical studies and the interpretation of their findings.

Understanding a scientific publication requires more than reading its conclusions.

It involves examining the study design, the population included, the therapeutic interventions investigated, the comparison groups, and the outcomes assessed.

Concepts such as Overall Survival (OS), Progression-Free Survival (PFS), adverse events, quality of life, and statistical significance are particularly important when evaluating the actual benefits of a treatment.

A statistically significant difference does not necessarily translate into an equally meaningful clinical benefit for every patient.

Similarly, measures of treatment effectiveness need to be considered alongside safety data, their impact on everyday life, and individual patient preferences.

Developing these skills strengthens the ability of patient representatives to participate meaningfully in scientific discussions, critically evaluate information, and raise well-informed questions.

Patient Involvement Must Begin Before Research Starts

One of the most important issues highlighted during the educational discussions was the need for meaningful patient involvement from the earliest stages of clinical study design.

Patient and Public Involvement (PPI) is not the same as participating in a clinical trial as a research subject.

Rather, it recognises patients’ lived experiences as a valuable source of knowledge that can contribute to identifying research priorities and shaping the research process itself.

People with lived experience of a condition can provide important insights into which treatment outcomes matter most in everyday life, which research procedures may be excessively burdensome, and what barriers could limit participation in a study.

Moving from research conducted “for patients” to research developed “with patients” represents a fundamental shift in the philosophy of contemporary health research.

Patient Experience Data: When Lived Experience Becomes Part of Scientific Knowledge

Particular importance is attached to Patient Experience Data (PED).

These data capture the experiences, needs, preferences, and priorities of people living with a health condition.

In oncology care, the patient experience extends beyond the clinical response to treatment. It also includes the impact of cancer on employment, family relationships, financial security, daily functioning, and quality of life.

Using such data can contribute to a more comprehensive understanding of treatment needs and the benefit–risk balance.

Informed Consent: From Signing a Document to Genuine Understanding

Informed consent is a fundamental requirement for the ethical conduct of clinical research.

However, signing a document is not enough.

Participants need to understand the purpose of the study, its procedures, potential benefits and risks, available alternatives, and their right to withdraw in accordance with the applicable regulatory framework, without adverse consequences for their standard care.

The use of clear and understandable language, sufficient time to consider the information provided, and the opportunity to ask questions are essential conditions for genuinely informed decision-making.

Health literacy is not solely about what patients know. It is also about the ability of healthcare systems to provide information in ways that are understandable, accessible, and appropriate for informed decision-making.

From Formal Representation to Genuine Influence

The training discussions also highlighted the ongoing challenges surrounding meaningful patient representation.

Limited access to specialised knowledge, lack of time and resources, geographical and social inequalities, and the absence of systematic participation mechanisms can create significant barriers.

At the same time, transparency, independence, and the management of conflicts of interest are essential conditions for credible patient representation.

Strengthening patient involvement in hospitals, scientific advisory bodies, and established healthcare evaluation and decision-making processes is an important step towards a more transparent and inclusive system.

The real challenge is not simply to secure a seat for patients at the decision-making table, but to ensure that they can genuinely influence the decisions being made.

What EUPATI Participation Means for Kapa3

For Kapa3, investing in EUPATI education forms part of a broader effort to connect scientific evidence with the everyday experiences of people living with cancer.

Aristea Archontidou and Despina Chrysostomidou participated in the educational activities and workshops focusing on the critical appraisal of clinical studies and statistical analysis, exchanging knowledge and experiences with patient representatives and professionals from different fields.

The knowledge gained through this experience directly supports Kapa3’s core priorities:

Empowering patients and caregivers.
Strengthening health and digital literacy.
Improving access to reliable and understandable information.
Promoting patient involvement in research.
Encouraging interdisciplinary collaboration and the co-creation of services.
Training associates and volunteers to provide better navigation and support.

This approach is also reflected in the development of MYRTO – Kapa3’s Digital Social Navigator, which uses Artificial Intelligence to facilitate access to evidence-informed information on rights, benefits, and available support services.

Through research, European partnerships, education, and everyday social guidance, Kapa3 seeks to contribute to the development of a more structured and evaluable model of human-centred navigation in oncology care.

For Kapa3, participation in initiatives such as EUPATI represents an investment in the organisation’s collective knowledge and in continuously strengthening its scientific and social contribution.

From Participation to Co-Creation

Kapa3’s participation in the EUPATI Greece Patient Academy reinforces the importance of continuous education and meaningful collaboration between the scientific community and people with lived experience of illness.

Patient involvement should not be reduced to a formal process of representation.

It must be meaningful, evidence-informed, inclusive, and embedded from the earliest stages of research and healthcare service design.

Because patients are not merely recipients of scientific knowledge.

They can and should be active partners in creating it.

At Kapa3, we remain committed to investing in knowledge, education, collaboration, and co-creation.

Because better care is not only designed for people. It is designed with them.

Sources and Further Reading

EUPATI – European Patients’ Academy on Therapeutic Innovation
https://eupati.eu/

Greek Patients’ Association
https://greekpatient.gr/

University of Basel – Patient and Public Involvement: Why and How
https://dkf.unibas.ch/en/scientific-services/patient-and-public-involvement/patient-and-public-involvement-why-and-how/

European Medicines Agency – Patient Experience Data Reflection Paper
https://www.ema.europa.eu/en/scientific-guidelines/patient-experience-data-ped-reflection-paper

Bereczky, T. (2013). The Impatient Patient: A Discussion of Patient Involvement in Novel Forms of Knowledge Production – A Case Study of the European Community Advisory Board on HIV/AIDS.
Socio.hu.
https://socio.hu/uploads/files/english/bereczky.pdf

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

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

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.