Barbara Bodorkos Friedman

• Ljøsne, Isabelle Sylvie Budin; Friedman, Barbara Bodorkos; Baaré, William F. C.; Bartrés-Faz, David; Carver, Rebecca Bruu & Drevon, Christian André [Show all 17 contributors for this article] (2023). Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium. Health Expectations. ISSN 1369-6513. 26(3), p. 1318–1326. doi: 10.1111/hex.13747. Full text in Research Archive Show summary

  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.

• Carver, Rebecca Bruu; Fredheim, Nanna Alida Grit; Mowinckel, Athanasia Monika; Ebmeier, Klaus P.; Friedman, Barbara Bodorkos & Rosness, Tor Atle [Show all 20 contributors for this article] (2022). People's interest in brain health testing: Findings from an international, online cross-sectional survey. Frontiers in Public Health. 10, p. 1–19. doi: 10.3389/fpubh.2022.998302. Full text in Research Archive Show summary

  Brain health entails mental wellbeing and cognitive health in the absence of brain disorders. The past decade has seen an explosion of tests, cognitive and biological, to predict various brain conditions, such as Alzheimer's Disease. In line with these current developments, we investigated people's willingness and reasons to—or not to—take a hypothetical brain health test to learn about risk of developing a brain disease, in a cross-sectional multilanguage online survey. The survey was part of the Global Brain Health Survey, open to the public from 4th June 2019 to 31st August 2020. Respondents were largely recruited via European brain councils and research organizations. 27,590 people responded aged 18 years or older and were predominantly women (71%), middle-aged or older (>40 years; 83%), and highly educated (69%). Responses were analyzed to explore the relationship between demographic variables and responses. Results: We found high public interest in brain health testing: over 91% would definitely or probably take a brain health test and 86% would do so even if it gave information about a disease that cannot be treated or prevented. The main reason for taking a test was the ability to respond if one was found to be at risk of brain disease, such as changing lifestyle, seeking counseling or starting treatment. Higher interest in brain health testing was found in men, respondents with lower education levels and those with poor self-reported cognitive health. Conclusion: High public interest in brain health and brain health testing in certain segments of society, coupled with an increase of commercial tests entering the market, is likely to put pressure on public health systems to inform the public about brain health testing in years to come.

• Ljøsne, Isabelle Sylvie Budin; Mowinckel, Athanasia Monika; Friedman, Barbara Bodorkos; Ebmeier, Klaus P; Drevon, Christian A & Carver, Rebecca Bruu [Show all 22 contributors for this article] (2022). Public perceptions of brain health: an international, online cross-sectional survey. BMJ Open. 12(4). doi: 10.1136/bmjopen-2021-057999. Full text in Research Archive Show summary

  Objectives To investigate public perspectives on brain health. Design Cross-sectional multilanguage online survey. Setting Lifebrain posted the survey on its website and social media and shared it with stakeholders. The survey was open from 4 June 2019 to 31 August 2020. Participants n=27 590 aged ≥18 years from 81 countries in five continents completed the survey. The respondents were predominantly women (71%), middle aged (41–60 years; 37%) or above (>60 years; 46%), highly educated (69%) and resided in Europe (98%). Main outcome measures Respondents’ views were assessed regarding factors that may influence brain health, life periods considered important to look after the brain and diseases and disorders associated with the brain. We run exploratory linear models at a 99% level of significance to assess correlates of the outcome variables, adjusting for likely confounders in a targeted fashion. Results Of all significant effects, the respondents recognised the impact of lifestyle factors on brain health but had relatively less awareness of the role socioeconomic factors might play. Most respondents rated all life periods as important for the brain (95%–96%), although the prenatal period was ranked significantly lower (84%). Equally, women and highly educated respondents more often rated factors and life periods to be important for brain health. Ninety-nine per cent of respondents associated Alzheimer’s disease and dementia with the brain. The respondents made a connection between mental health and the brain, and mental disorders such as schizophrenia and depression were significantly more often considered to be associated with the brain than neurological disorders such as stroke and Parkinson’s disease. Few respondents (<32%) associated cancer, hypertension, diabetes and arthritis with the brain. Conclusions Differences in perceptions of brain health were noted among specific segments of the population. Policies providing information about brain-friendly health behaviours and targeting people less likely to have relevant experience may be needed.

• Ljøsne, Isabelle Sylvie Budin; Friedman, Barbara Bodorkos; Suri, Sana; Solé-Padullés, Cristina; Düzel, Sandra & Drevon, Christian André [Show all 24 contributors for this article] (2020). The Global Brain Health Survey: Development of a Multi-Language Survey of Public Views on Brain Health. Frontiers in Public Health. doi: 10.3389/fpubh.2020.00387. Full text in Research Archive
• Ljøsne, Isabelle Sylvie Budin; Friedman, Barbara Bodorkos; Suri, Sana; Solé-Padullés, Cristina; Düzel, Sandra & Drevon, Christian A [Show all 24 contributors for this article] (2020). The global brain health survey: Development of a multi-language survey of public views on brain health. Frontiers in Public Health. 8:387, p. 1–13. doi: 10.3389/fpubh.2020.00387. Full text in Research Archive Show summary

  Background: Brain health is a multi-faceted concept used to describe brain physiology, cognitive function, mental health and well-being. Diseases of the brain account for one third of the global burden of disease and are becoming more prevalent as populations age. Diet, social interaction as well as physical and cognitive activity are lifestyle factors that can potentially influence facets of brain health. Yet, there is limited knowledge about the population's awareness of brain health and willingness to change lifestyle to maintain a healthy brain. This paper introduces the Global Brain Health Survey protocol, designed to assess people's perceptions of brain health and factors influencing brain health. Methods: The Global Brain Health Survey is an anonymous online questionnaire available in 14 languages to anyone above the age of 18 years. Questions focus on (1) willingness and motivation to maintain or improve brain health, (2) interest in learning more about individual brain health using standardized tests, and (3) interest in receiving individualized support to take care of own brain health. The survey questions were developed based on results from a qualitative interview study investigating brain health perceptions among participants in brain research studies. The survey includes 28 questions and takes 15–20 min to complete. Participants provide electronically informed consent prior to participation. The current survey wave was launched on June 4, 2019 and will close on August 31, 2020. We will provide descriptive statistics of samples distributions including analyses of differences as a function of age, gender, education, country of residence, and we will examine associations between items. The European Union funded Lifebrain project leads the survey in collaboration with national brain councils in Norway, Germany, and Belgium, Brain Foundations in the Netherlands and Sweden, the National University of Ostroh Academy and the Women's Brain Project. Discussion: Results from this survey will provide new insights in peoples' views on brain health, in particular, the extent to which the adoption of positive behaviors can be encouraged. The results will contribute to the development of policy recommendations for supporting population brain health, including measures tailored to individual needs, knowledge, motivations and life situations.

• Friedman, Barbara Bodorkos; Suri, Sana; Sole-Padulles, Cristina; Düzel, Sandra; Drevon, Christian A & Baaré, William F. C. [Show all 16 contributors for this article] (2019). Are People Ready for Personalized Brain Health? Perspectives of Research Participants in the Lifebrain Consortium. The gerontologist. ISSN 0016-9013. doi: 10.1093/geront/gnz155. Full text in Research Archive Show summary

  Background and Objectives A healthy brain is central to physical and mental well-being. In this multi-site, qualitative study, we investigated views and attitudes of adult participants in brain research studies on the brain and personalized brain health as well as interest in maintaining a healthy brain. Design and Methods We conducted individual interviews with 44 adult participants in brain research cohorts of the Lifebrain consortium in Spain, Norway, Germany, and the United Kingdom. The interviews were audio recorded, transcribed, and coded using a cross-country codebook. The interview data were analyzed using qualitative content analysis. Most participants did not focus on their own brain health and expressed uncertainty regarding how to maintain it. Those actively focusing on brain health often picked one specific strategy like diet or memory training. The participants were interested in taking brain health tests to learn about their individual risk of developing brain diseases, and were willing to take measures to maintain their brain health if personalized follow-up was provided and the measures had proven impact. The participants were interested in more information on brain health. No differences in responses were identified between age groups, sex, or countries. Discussion and Implications Concise, practical, personalized, and evidence-based information about the brain may promote brain health. Based on our findings, we have launched an ongoing global brain health survey to acquire more extensive, quantitative, and representative data on public perception of personalized brain health.

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• Carver, Rebecca Bruu; Fredheim, Nanna Alida Grit; Ljøsne, Isabelle Sylvie Budin & Friedman, Barbara Bodorkos (2022). What motivates people to look after their brain health? Insights from the Global Brain Health Survey. Universitetet i Oslo. ISSN 9788284062679. Full text in Research Archive Show summary

  Brain health is a relatively new concept encompassing mental and cognitive health. Good brain health involves both mental wellbeing and normal brain function, in the absence of brain disease. The current public report is based on answers from more than 27 000 people in Europe and elsewhere, and provides insight in factors motivating people to look after their brain. The report finds that the prospect of experiencing symptoms of cognitive or mental decline was a key motivation to undertake lifestyle changes, even more so than having been diagnosed with a brain disorder. Further, half of the respondents would be motivated by knowing that lifestyle changes are beneficial for brain health. Motivations to make lifestyle changes varied across sociodemographic and individual characteristics. Our results suggest that it may be harder to convince older people to change habits than younger people. The report is authored by members of the Lifebrain consortium at the University of Oslo and the Norwegian Institute of Public Health. The report is highly relevant for healthcare professionals, policymakers, and caregivers seeking to motivate patients and members of the public to look after their brain health.

• Fredheim, Nanna Alida Grit; Ljøsne, Isabelle Sylvie Budin; Friedman, Barbara Bodorkos & Carver, Rebecca Bruu (2021). How to promote citizens' brain health? Insights from the Global Brain Health Survey on citizens' perceptions of brain health interventions. Universitetet i Oslo. ISSN 9788284062235. Full text in Research Archive Show summary

  Brain health is about your mental well-being and the ability to remember, learn, plan and concentrate. The report is based on answers from 27,590 respondents from 81 countries who took part in the Global Brain Health Survey, which asked the public what they would need in order to help improve or maintain their brain health. The survey is the largest worldwide study to date about public perceptions of brain health. The report found that people want clear, evidence-based information about exactly which lifestyle changes can improve their brain health. People also say they would need professional support and regular monitoring or follow-up to track the effect of such changes. The report was written by Lifebrain consortium members at the University of Oslo and the Norwegian Institute of Public Health.

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