Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project

Diaz, Ana; Gove, Dianne; Nelson, Mia; Smith, Michael Sharwood; Tochel, Claire; Bintener, Christophe; Ly, Amanda; Bexelius, Christin; Gustavsson, Anders; Georges, Jean; Gallacher, John; Sudlow, Cathie

doi:10.1111/hex.13246

Cited by 7 publications

(10 citation statements)

References 25 publications

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“…For example, working collaboratively in this way with several stakeholders and different companies may be easier for people affected by dementia than working with one single company (e.g., in terms of trust, timing, confidentiality issues, etc.). Details of the PI activities carried out within these projects have been published elsewhere (5)(6)(7).…”

Section: What Is Ae's Approach To Public Involvement?mentioning

confidence: 99%

Keeping track of and recognizing the value of Public Involvement work in dementia research

Georges

Diaz-Ponce²,

Lamirel³

et al. 2022

Front. Neurol.

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The Public Involvement (PI) of people with dementia is slowly but progressively moving from a “nice to have” to a “must have” element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and outcome of PI are, however, unfortunately typically under or inadequately reported. In this article, we provide an overview of what PI is and why it is important to dementia research and Alzheimer Europe's approach to PI. We draw on our recent experience of compiling a set of examples of PI in different European projects in publicly available sources. This highlighted the difficulty of finding information about PI activities and the almost total lack of details of such activities in formal reports, official records, and/or public project websites. In this article, we emphasize gaps and call for more stringent conditions for the inclusion and reporting of PI work in the context of the approval and funding of dementia research projects. We call for the establishment of obligatory reporting on the nature, specific challenges, and impact of PI in dementia research in formal reports (e.g., to funders), in public project websites, and in peer-reviewed articles. Such reporting should cover several key factors such as who was involved, how they were involved, and what impact PI had on the research process.

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Section: What Is Ae's Approach To Public Involvement?mentioning

confidence: 99%

Keeping track of and recognizing the value of Public Involvement work in dementia research

Georges

Diaz-Ponce²,

Lamirel³

et al. 2022

Front. Neurol.

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“…Stakeholder engagement in clinical brain research is common and encouraged in contexts where, for instance, the views of patients are needed to test the acceptance or efficacy of a treatment to inform clinical practice, 9 , 10 , 11 or to understand their experiences of disease progression. 10 , 12 In stark contrast, stakeholder engagement remains scarce in projects conducting basic science research on the structure and function of the brain.…”

Section: Introductionmentioning

confidence: 99%

“…7 Stakeholder engagement can take different forms but often includes activities allowing stakeholders to influence the conception, development and dissemination of research projects and facilitate the exchange of views and experiences. 8 Stakeholder engagement in clinical brain research is common and encouraged in contexts where, for instance, the views of patients are needed to test the acceptance or efficacy of a treatment to inform clinical practice, [9][10][11] or to understand their experiences of disease progression. 10,12 In stark contrast, stakeholder engagement remains scarce in projects conducting basic science research on the structure and function of the brain.…”

mentioning

confidence: 99%

“…8 Stakeholder engagement in clinical brain research is common and encouraged in contexts where, for instance, the views of patients are needed to test the acceptance or efficacy of a treatment to inform clinical practice, [9][10][11] or to understand their experiences of disease progression. 10,12 In stark contrast, stakeholder engagement remains scarce in projects conducting basic science research on the structure and function of the brain. 13 This may partially be due to the nature of the research that, although providing important new and translatable knowledge, often produces findings of limited immediate clinical implications and may thus be perceived by researchers to be less relevant for stakeholders.…”

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confidence: 99%

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Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

Budin‐Ljøsne

Friedman

Baaré

et al. 2023

Health Expectations

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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.

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“…3,4 With some research involving specifically recruited individual public advisers, [5][6][7] other research engages with dementia and carer stakeholder groups such as the Dementia Engagement and Empowerment Project 8 and the European Working Group of People With Dementia. 9,10 A broader approach to involving lived and professional experts in the co-design of research, and also empowering and advancing their knowledge, is by creating a Community of Practice (CoP). Communities of Practice can help facilitate wider and more in-depth social learning and knowledge exchange compared to individual learning.…”

Section: Introductionmentioning

confidence: 99%

A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum

Giebel

Tetlow

Faulkner

et al. 2023

Health Expectations

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BackgroundToo often, dementia research is conducted in research silos without thorough integration and the involvement of people with lived experiences, care professionals and the Third Sector. Research can also get lost in academic publications, without reaching those benefiting most from the evidence. The aim of this methods and evaluation paper was to outline the aims, components and evaluation of the public‐facing and ‐engaging Liverpool Dementia & Ageing Research Forum, to provide a blueprint for setting up similar communities of practice.MethodsThe Forum was set up in 2019 with the aim to (a) connect different stakeholders in dementia and ageing and co‐produce research and to (b) inform and educate. This paper provides an account of the Forum model and evaluates the following key elements: (1) engagement; (2) experiences of the Forum and its impact (via an online evaluation survey and three reflections). All Forum members and attendees were asked to complete a brief evaluation survey about their experiences from October to November 2022. Three regular Forum attendees provided a case study about their involvement and its impact.FindingsThe Forum has reached out to diverse stakeholders and the general public, generating growing interest and engagement since its initiation. Forty‐four members and attendees completed the survey. Most attendees completing the evaluation survey have so far engaged in between 5 and 20 activities (47.8%), and 91% felt the aims of the Forum have been met. Engaging in the Forum has produced various benefits for attendees, including increased research capacity and knowledge, as well as improved connectivity with other stakeholders. Eleven percent of respondents, 39% of lived experts, stated they experienced improved access to postdiagnostic care.ConclusionsThis is the first reported multistakeholder Community of Practice (CoP) on dementia and ageing. We make key recommendations for setting up and running similar dementia CoP, as they provide a noninterventional format for raising awareness, capacity and access to dementia care.Patient and Public InvolvementThis paper reports on the involvement and engagement of people with dementia, unpaid carers, health and social care providers and Third Sector organisations in a CoP.

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Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project

Cited by 7 publications

References 25 publications

Keeping track of and recognizing the value of Public Involvement work in dementia research

Keeping track of and recognizing the value of Public Involvement work in dementia research

Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum

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