TY - JOUR
T1 - Stakeholder engagement in European brain research
T2 - Experiences of the Lifebrain consortium
AU - Budin-Ljøsne, Isabelle
AU - Friedman, Barbara B.
AU - Baaré, William F. C.
AU - Bartrés-Faz, David
AU - Carver, Rebecca B.
AU - Drevon, Christian A.
AU - Ebmeier, Klaus P.
AU - Fjell, Anders M.
AU - Ghisletta, Paolo
AU - Henson, Richard N.
AU - Kievit, Rogier
AU - Madsen, Kathrine S.
AU - Nawijn, Laura
AU - Suri, Sana
AU - Solé-Padullés, Cristina
AU - Walhovd, Kristine B.
AU - Zsoldos, Enikő
N1 - Funding Information: The authors greatly appreciate organizational and individual stakeholders who participated in the stakeholder activities and made valuable contributions, in particular the Norwegian Brain Council, the German Brain Council, the Belgian Brain Council, the Swedish Brain Foundation, the Women's Brain Project, the National University of Ostroh Academy in Ukraine, Join Dementia Research in the United Kingdom and Hersenstichting and Hersenonderzoek in The Netherlands. They would also like to thank their colleagues in Lifebrain for their continuous efforts to engage stakeholders in their respective countries. This research is funded by the EU Horizon 2020 Grant: ‘Healthy minds 0–100 years: Optimising the use of European brain imaging cohorts (“Lifebrain”)’, Grant Agreement Number 732592. Funding Information: The authors greatly appreciate organizational and individual stakeholders who participated in the stakeholder activities and made valuable contributions, in particular the Norwegian Brain Council, the German Brain Council, the Belgian Brain Council, the Swedish Brain Foundation, the Women's Brain Project, the National University of Ostroh Academy in Ukraine, Join Dementia Research in the United Kingdom and Hersenstichting and Hersenonderzoek in The Netherlands. They would also like to thank their colleagues in Lifebrain for their continuous efforts to engage stakeholders in their respective countries. This research is funded by the EU Horizon 2020 Grant: ‘Healthy minds 0–100 years: Optimising the use of European brain imaging cohorts (“Lifebrain”)’, Grant Agreement Number 732592. Publisher Copyright: © 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.
PY - 2023/6
Y1 - 2023/6
N2 - Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the 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—organized 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 at 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 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 data collection 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 relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and 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 organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration.
AB - Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the 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—organized 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 at 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 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 data collection 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 relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and 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 organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration.
KW - Lifebrain
KW - brain health
KW - brain research
KW - stakeholder engagement
UR - http://www.scopus.com/inward/record.url?scp=85152078636&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/hex.13747
DO - https://doi.org/10.1111/hex.13747
M3 - Article
C2 - 36989126
SN - 1369-6513
VL - 26
SP - 1318
EP - 1326
JO - Health expectations
JF - Health expectations
IS - 3
ER -