PUBLIC ENGAGEMENT IN RESEARCH INFRASTRUCTURES FOR MISSION CANCER: MANAGING COMPLEXITY OF EMERGING TECHNOLOGIES
Context
Why PERIFORMANCE?
PERIFORMANCE is a pioneering project designed to transform and understand the transformations in stakeholder engagement in cancer research by addressing the ethical, legal, and societal implications (ELSI) of cancer research and emerging technologies.
Our pillars
Mission: Cancer
Cancer is one of today’s greatest health challenges, driven by ageing populations, lifestyle factors, and environmental conditions. The Horizon Europe Mission on Cancer, together with Europe’s Beating Cancer Plan, aims to improve the lives of over 3 million people by 2030 through prevention, early diagnosis, treatment, and equitable access to care. Collaboration is key—uniting research, public health, data sharing, digital innovation, and citizen engagement to deliver transformative solutions.
Emerging Technologies
Cancer research is increasingly data-driven. Advances in AI, big data, and secure health data environments like the European Health Data Space (EHDS) are reshaping how we understand and treat cancer. These technologies offer unprecedented opportunities but also raise ethical, legal, and societal challenges.
Dialogue among stakeholders is necessary to ensure that innovation aligns with societal values and contributes to trust and equity.
Biobanks
Biobanks are essential for cancer research, at the intersection between science and society, enabling and acting as data integration hubs.
Biobanks as local actors have direct links to citizens, researchers, and healthcare providers to advance transdisciplinary research.
As custodians of participants’ samples and data, biobank professionals can contribute to secure, effective use of resources, supporting innovation while safeguarding trust.
ELSI
Integrating an ELSI (Ethical, Legal, and Societal Implications ) perspective into cancer research ensures global trust, fairness, and respect for participants’ rights.
Embedding ELSI in technology development from an early stage is needed to ensure that progress benefits all, without compromising ethical standards or social equity.
ELSI reflections include GDPR compliance, patient autonomy, resource allocation, commercial interests, data privacy, informed consent, genetic counselling, and other interdisciplinary approaches that guide policy and regulation.
Our Mission
There is a need to increase knowledge of how to strengthen the ethical, legal and social framework within the cancer research process. A holistic approach is required to ensure that advancements are aligned with societal values, and are equitable, inclusive and trusted by the public, especially at a time that increasing amounts of data, very large data infrastructures and artificial intelligence (AI) are becoming central to cancer research and care.
Our goal is to navigate the complexities of research and innovations, such as AI and the European Health Data Space (EHDS), facilitating equitable transitions and promoting social innovation within the EU Cancer Mission.
Through reviews, interviews, syntheses, focus groups and case studies, we aim to identify gaps and best practices in engagement to create healthcare systems that are more equitable, participatory, and responsive to the needs of diverse communities in cancer research.
EU initiatives for a healthier future
Cancer remains one of the greatest health challenges of our time, requiring coordinated action across research, innovation, healthcare systems and society. In response, the European Union has launched a set of ambitious and complementary initiatives, including Europe’s Beating Cancer Plan, the EU Cancer Mission under Horizon Europe, and the European Health Data Space (EHDS). Together, these initiatives aim to improve cancer prevention, diagnosis, treatment and quality of life for patients and survivors, while fostering innovation. PERIFORMANCE aims to enable the secure and ethical use of health data, and the implementation of these initiatives, by supporting more equitable, resilient and patient-centred health systems across Europe.
EU Mission: Cancer
The EU Mission on Cancer works in synergy with the implementation of Europe’s Beating Cancer Plan and links research and innovation policies by:
- Advancing knowledge and evidence to improve the understanding of cancer, its prevention, diagnosis, treatment, and the quality of life of patients.
- Engaging with European citizens, including patients and cancer survivors.
- Establishing national cancer hubs in Member States and Associated Countries.
- Delivering a sound basis and scientific evidence for the overall implementation of Europe’s Beating Cancer Plan.
Europe’s Beating Cancer plan.
Europe’s Beating Cancer Plan aims to improve the lives of more than 3 million people by 2030 by enhancing prevention, early detection, diagnostics, therapeutics, and quality of life, supported by scientific evidence and tools generated and gathered by the EU Mission on Cancer.
One hallmark of Europe’s Beating Cancer Plan is improving early diagnosis of cancer through screenings, increasing efforts to ensure equal access to cancer diagnosis and treatment among Member States, as well as better services for cancer survivors.
European Health Data Space
The European Health Data Space (EHDS) Regulation governs health data use and re-use in the European Union and entered into force in February 2025. It aims to empower individuals through better access to their health data, supporting free movement of health data with people and outlining rules for use of health data for research, innovation and policy making.
Use of cancer data for research (secondary use of health data) is contemplated in the EHDS Regulation.