Empowered citizens, personalised care: a new era for prevention in Europe
European Parliament, Brussels
Introduction and aim of the initiative
At a time when Europe is facing a growing burden of chronic diseases and a rapidly ageing population, the need to strengthen prevention has become a critical priority. However, prevention can no longer be conceived as a “one-size-fits-all” approach. Today, scientific and technological advances allow us to shift toward personalised prevention – interventions tailored to each individual's biological, environmental, behavioural, and socio-economic characteristics.
This new paradigm, integrating genomic data, lifestyles, risk factors, and personal preferences, not only promises greater effectiveness in early diagnosis and disease prevention but also lays the foundation for a more inclusive, sustainable, and person-centred healthcare system. However, this transformation can only succeed if citizens and patients are recognised and supported as active participants. Without their informed, meaningful, and ongoing engagement, personalised medicine risks remaining an innovative promise that fails to reach its full societal impact.
To date, EU member states dedicate the 97% of their healthcare budget to cure, while they on average spend 2,8 % on preventive care. In a scenario of tighter budget constraints, the value of prevention is immeasurable: by reducing the prevalence of diseases and avoiding costly treatments, prevention plays a crucial role in maintaining the long-term sustainability of healthcare, social care, and welfare systems.
For these reasons, the 2026 edition of the European Patients’ Rights Day (EPRD) will be dedicated to recognising personalised prevention as a human right – directly linked to the “Right to Preventive Measures”, the first principle stated in the European Charter of Patients’ Rights.
Drafted in 2002 by Active Citizenship Network and civic organisations from 12 EU countries, the Charter affirms every individual’s right to appropriate services to prevent illness through health education, vaccination, and early detection programmes. Today, that right is evolving to include access to genomic screening, digital risk assessment tools, and personalised health interventions.
Drawing on the evidence and outcomes of the EU-funded PROPHET project – A Personalised Prevention Roadmap for the Future Healthcare, the 2026 conference will highlight the enabling conditions needed to make personalised prevention a reality: health literacy, data protection, citizen trust, equity of access, and participatory governance. Citizens must not be seen as passive beneficiaries of prevention, but as informed actors able to make decisions about their own health, contribute to public health research, and participate in shaping prevention policies.
It will also provide an opportunity to discuss how the European Health Data Space (EHDS), the ethical use of genomic data, and a culture of trust and transparency can contribute to advancing preventive medicine while respecting the rights and preferences of all citizens.
Ultimately, this edition of the EPRD will advocate for a future in which personalised prevention becomes an enforceable right – not a privilege – supported by policies that place patients and citizens at the centre. Participants will reflect on how to translate this vision into practice through inclusive research, improved health literacy, equitable access to innovation, and a shared commitment to co-responsibility across all healthcare actors.
Cittadinanzattiva has long been engaged in promoting this shift through civic advocacy. Its Manifesto for Personalised Medicine outlines key priorities to ensure that innovation in healthcare remains grounded in equity, transparency, and citizen empowerment. These include ethical data governance, accessible and comprehensible health information, and active citizen involvement in the design of preventive strategies.
For all these reasons, the European Patients' Rights Day 2026 will focus on:
1. Opportunities, barriers, challenges, and enablers to personalised prevention: building on the work of projects such as EU-funded projects (PROPHET) and private-led initiatives, we will map the obstacles and opportunities in making personalised prevention a reality across Europe. Topics will include the lack of public and professional awareness, data privacy concerns, gaps in genomic literacy, and regional disparities. It will also highlight enablers such as civic trust, co-creation processes, and accessible digital tools.
2. Better understand the commitment of the European institutions on this issue, starting with the Cypriot-led European Union Council Presidency, the European Commission, and the standing committee SANT established at the EU Parliament following urgent requests from civil society organisations - indeed, the official document emphasises "responding to citizens' expectations". In particular, how can EU institutions and national health systems ensure that personalised prevention is recognised and implemented as an enforceable right, and not a privilege? How to guarantee access to innovative preventive strategies in a way that is equitable, inclusive, and based on solidarity, not just individual risk profiling.
4. Engaging citizens and patients: from awareness to co-responsibility. Personalised prevention requires not just innovation, but participation: shared responsibility and civic empowerment are crucial for the success of these models across care, research, education, and governance.
3. The role of the European Health Data Space (EHDS) in prevention: how structured, secure, and ethical data sharing can unlock the potential of personalised prevention, especially in areas like cancer screening and chronic disease monitoring?
Objectives of the event
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Reaffirm the Right to Preventive Measures as a fundamental part of patients’ rights in the EU, updating it in light of personalised prevention tools, genomic innovation, and digital health technologies.
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Promote personalised prevention as a public good, accessible to all and grounded in equity, inclusiveness, and shared responsibility among institutions, professionals, and citizens.
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Highlight the importance of patient and citizen empowerment in shaping and benefiting from personalised prevention strategies, with a focus on engagement in care, research, education, and governance.
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Showcase the role of data sharing and the European Health Data Space (EHDS) in enabling secure, ethical, and interoperable health data use for prevention, with citizens’ trust and consent at the centre.
Origin & value of the European Patients’ Rights Day
In 2002, Active Citizenship Network (ACN) promoted and drafted – with the collaboration of citizens’ and patients’ organizations from several MS – the European Charter of Patients’ Rights. This charter, available in 22 languages, enumerates 14 rights - the rights to: prevention; access to care; information; consent; free choice; privacy and confidentiality; respect of patients’ time; observance of quality standards; safety; innovation; avoidance of unnecessary suffering and pain; personalized treatment; to complain and compensation.
It is based on the Charter of Fundamental Rights of the European Union, which is a cornerstone for European citizens and health services. Many of these rights were also included in the Council conclusions on Common values and principles in EU Health Systems, adopted in June 2006.
Vytenis Andriukaitis, former EU Commissioner for Health and Food Safety attending the 10th European Patients’ Rights Day in 2016, between the former Secretary General at Cittadinanzattiva and the Director of Active Citizenship Network
Enhancing these rights depends on the commitment of all healthcare stakeholders across Europe. Therefore, it is crucial to raise public awareness of patients' rights and their responsibilities. The annual celebration of the European Patients' Rights Day in each EU Member State is a step towards this goal. ACN, together with its partner organizations, has been celebrating this day since 2007 with a European conference. Currently, the European Patients' Rights Day is an annual regular event on European and national agendas, thanks to the efforts of Active Citizenship Network and the more than one hundred patient and civic associations that compose the network and celebrate it throughout Europe. More information is available on the Active Citizenship Network website.
Publications
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BMC PUBLIC HEALTH (Published date: 04 November 2025): Personalised prevention: what patients and citizen advocates want for better engagement – a qualitative study
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Cittadinanzattiva (2020): Manifesto for the right to personalized medicine for cancer patients
