Objectives
To respond to these challenges, the PERIFORMANCE established the following 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: Enable bottom-up initiatives by issuing open calls for funding innovative local engagement, ensuring that new approaches and innovative ideas for engagement are culturally appropriate, technically feasible, and contextually relevant.
- 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.
How We Work
- Co-construction of spaces and common learning through workshops, focus groups and interviews to promote the sharing of visions, experiences and knowledge.
- Landscape understanding to improve insight into the strengths, weaknesses, and opportunities across different territories.
- Open call for engagement practices to identify, promote and share innovative methods and engaging activities, and to promote trust in emerging technologies and data use.
- Identifying and compiling open tools and successful bottom-up approaches to empower local actors and initiatives.
- Provide training and workshops to ensure inclusive, adapted and sustainable approaches.
Impact
By collaborating with regional, multidisciplinary and diverse stakeholders, PERIFORMANCE promotes:
- More equitable, participatory, and responsive technological and scientific progress.
- Societal transitions toward trust and equity, considering new emerging technologies and advancements.
- Innovative engagement models for cancer research