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PUBLIC ENGAGEMENT IN RESEARCH INFRASTRUCTURES FOR MISSION CANCER: MANAGING COMPLEXITY OF EMERGING TECHNOLOGIES

Where science meets society to transform cancer research

WELCOME

Welcome to the PERIFORMANCE project website.

The EU Cancer Mission, together with the Europe’s Beating Cancer Plan, aims to drastically reduce the burden of cancer by promoting research, prevention, early diagnosis, new treatments and care innovation, improving the lives of millions of people.

Its success depends on real representation of different populations and incorporating the voices of patients, professionals and other actors from the cancer research and care landscape. This integrated approach not only enhances research efficacy but also ensures that technological advancements are aligned with societal values and patient-centred care.

PERIFORMANCE aims to ensure that cancer research and developments, in line with technological advances such as Artificial Intelligence (AI) and the European Health Data Space (EHDS), are applied in an ethical, equitable and transparent manner. It will strengthen public trust and ensure fair changes, solutions, and developments in the fight against cancer, by building knowledge and expertise on stakeholder engagement, analysing the impact of AI and EHDS, funding local participatory pilot projects and providing training.

Partners

Objectives

Wps

Countries

Partners

Objectives

WPS

Countries

OBJECTIVES

PROJECT OBJECTIVES

Enhance existing ways of engaging stakeholders:

Improve and deepen understanding of the complexities of cancer research and relevant actors, ensuring that innovations and developments align with societal values and needs.

Evaluate emerging technologies and regulations in terms of engagement and the implementation of the EU Cancer Mission:

Analyse the impact of emerging technologies and innovations, as part of the EU AI Act and the European Health Data Space (EHDS) Regulation, as well as the effects of these and additional regulations on cancer research and healthcare, in order to support the EU Cancer Mission.

Implement and evaluate engagement practices to foster local innovation:

Social and ethical analysis of public engagement: with and for health data spaces and Artificial Intelligence

Develop best practices.

Create a coherent and comprehensive set of best practices for stakeholder engagement and the responsible use of AI and EHDS in biobanking, in line with the mission objectives. This will provide a thorough understanding of how engagement can be conducted in different situations, highlighting the challenges and opportunities faced by local stakeholders and diverse contexts.

Promote knowledge sharing and training.

Widespread dissemination of results and training provision to ensure adoption and sustainable learning at the community level.

Broaden stakeholder diversity.

Involve a wide range of stakeholders, including patients, survivors, families, biobank staff, industry representatives, policymakers, NGOs and citizens at risk, to ensure inclusive participation across the research-to-care cycle.

What we do

HOW WILL WE APPROACH THIS?

The project is divided into eight work packages creating a comprehensive and complementary approach:

More Info

WP1

Identification of Stakeholder Engagement Practices in Cancer Research Biobanking

WP2

Regulatory Framework and Comparative Legal Analysis for Stakeholder Engagement in Cancer Research Biobanking

WP3

Social and Ethical Analysis of Public Engagement: With and for Health Data Spaces and Artificial Intelligence

WP4

Implementation and Evaluation of Engagement Practices in Cancer

WP5

Embedded Reflection on the Contribution of the Project to Mission: Cancer Goals

WP6

Dissemination, Communication, and Training

WP7

Project Management

WP8

Ethics Requirements

Our Partners

Partners

More Info

Our multidisciplinary consortium, coordinated by the Biobanking and BioMolecular Resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), brings together the expertise of 13 institutions across nine countries. It includes leading universities, research centers, and patient advocacy organizations, building a robust body of ELSI research to tackle the challenges of participant involvement and public engagement in cancer research.