Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium
Budin-Ljøsne IS., Bodorkos Friedman B., Baaré WFC., Bartrés-Faz D., Bruu Carver R., Drevon CA., EBMEIER KP., Fjell AM., Ghisletta P., Kievit R., Skak Madsen K., Nawijn L., SURI S., Solé-Padullés C., Walhovd KB., ZSOLDOS E.
Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle, and imaging data from European cohorts. Stakeholder activities of Lifebrain - organised in a separate work package – included organizing stakeholder events, investigating public perceptions of brain health, and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. Methods: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders, and stakeholders’ feedback of stakeholders attending stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach and results from evaluation forms were summarized after reviewing the frequency of responses. Results: Consortium researchers in the consortium and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized the collection of data on brain health perceptions and the production of papers, and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest, and research results as relevant for their work. Researchers identified barriers to stakeholder engagement including lack of time, difficulties in identifying relevant stakeholders, challenges in communicating complex scientific issues in lay language, and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints, and insufficient communication between researchers and stakeholders. Conclusion: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. Public contribution: Patient organisations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout project duration.