Tag: Patient Engagement

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/