Category: Transparency in healthcare

28 January – Data Protection Day: privacy, health and trust

European Data Protection Day, observed every year on 28 January, was established by the Council of Europe and is linked to Convention 108, the first legally binding international instrument on the protection of personal data. The day serves as a reminder that the right to privacy is a fundamental human right — especially in a time when personal information is increasingly collected, stored and processed digitally.

Personal data are not merely technical entries in databases and systems. They are fragments of people’s lives. They include health information, personal experiences, vulnerable moments and deeply private aspects of identity. When individuals share such information, they do so with the expectation that it will be handled with care, confidentiality and respect.

For organisations such as Kapa3, which work closely with patients and people in vulnerable situations, data protection goes far beyond legal compliance. It is a matter of dignity and trust. Health data — including information related to both physical and mental health — belong to the most sensitive categories of personal data. Inadequate protection or misuse can lead to stigma, discrimination and a profound sense of insecurity.

Within the European Union, the General Data Protection Regulation (GDPR) provides a common framework to ensure that individuals retain control over their personal information. Rights such as informed consent, access to data and the ability to request deletion are not administrative formalities. They are essential safeguards that protect human integrity, particularly in the context of healthcare and social support.

According to the World Health Organization (WHO), confidentiality and ethical governance of health data are fundamental to the provision of safe and high-quality care. Trust between patients and healthcare or support organisations is strengthened when personal information is managed transparently, responsibly and within clearly defined limits.

European Data Protection Day is not only an occasion to reflect on legal obligations or technical safeguards. It is an opportunity to consider how we approach privacy as a core element of respectful and ethical care. Protecting personal data is ultimately not about technology — it is about protecting the people behind the data and the trust that underpins every meaningful human relationship.

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Text/adaptation: Ifiyenia Anastasiou for Kapa3

Kapa3 at the Patients Summit 2025: A strong voice for cancer patients and their families

The Patients Summit 2025—the annual nationwide meeting organized by the Hellenic Patients Association—was successfully completed with great success. The event has become the leading forum for dialogue and collaboration among patient organizations across Greece. This year’s conference brought together representatives of patient associations, healthcare professionals, and policymakers to strengthen the voice of patients and shape a more humane, participatory, and effective healthcare system.

Participants exchanged experiences, presented best practices, and discussed key issues such as sustainability of patient associations, access to innovative treatments, the use of digital health tools, and patient empowerment in decision-making.

Through thematic panels and interactive workshops, the event highlighted the need for cooperation, transparency, and the use of data to drive targeted solutions with real social impact.

Kapa3 actively participated in the Summit, representing cancer patients and their families. A highlight of its presence was its contribution to the Strategic Workshop: “How do we measure our value?”, where Kapa3 presented its approach and operational philosophy on data collection and utilization as a tool for developing innovative initiatives.

For Kapa3, data collection is a key process in understanding the real needs of its beneficiaries. As emphasized during the session, data analysis—conducted in collaboration with the organization’s biostatistician, Mr. Konstantinos Tzanas—helps Kapa3 design targeted and evidence-based strategies. Continuous evaluation by patients themselves enables the adaptation of services and the development of innovative solutions that have a tangible, positive impact on their lives.

Kapa3’s presence at the Patients Summit 2025 underscored the importance of collaboration, scientific evidence, and collective action. The organization remains committed to amplifying the voice of cancer patients through knowledge, innovation, and transparency—values that can truly transform the patient experience and contribute to a fairer, more humane healthcare system for all.