Mapping Stakeholder Perspectives on Engagement in Concussion Research to Theory

Hunt, Cindy; Saint-Rome, Miranda de; Salle, Carol Di; Michalak, Alicja; Wilcock, Ruth; Baker, Andrew J.

doi:10.1017/cjn.2019.324

Cited by 4 publications

(2 citation statements)

References 30 publications

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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.…”

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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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confidence: 99%

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confidence: 99%

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

Budin‐Ljøsne

Friedman

Baaré

et al. 2023

Health Expectations

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Alignment of stakeholder and scientist understandings and expectations in a participatory modeling project

Veisi¹,

Jackson-Smith²,

Arrueta³

2022

Environmental Science & Policy

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Investigation of Study Procedures to Estimate Sensitivity and Reliability of a Virtual Physical Assessment Developed for Workplace Concussions: Method-Comparison Feasibility Study

Barnes,

Sveistrup,

Bayley

et al. 2024

JMIR Neurotech

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Background Remote approaches to workplace concussion assessment have demonstrated value to end users. The feasibility of administering physical concussion assessment measures in a remote context has been minimally explored, and there is limited information on important psychometric properties of physical assessment measures used in remote contexts. Objective The objectives of this feasibility study were to determine recruitment capability for a future larger-scale study aimed at determining sensitivity and reliability of the remote assessment, time required to complete study assessments, and acceptability of remote assessment to people with brain injuries and clinicians; document preliminary results of the sensitivity of the remote assessment when compared to the in-person assessment; and estimate the preliminary interrater and intrarater reliability of the remote assessments to inform procedures of a future larger-scale study that is adequately powered to reliably estimate these parameters of interest. Methods People living with acquired brain injury attended 2 assessments (1 in-person and 1 remote) in a randomized order. The measures administered in these assessments included the finger-to-nose test; balance testing; and the Vestibular/Ocular Motor Screening (VOMS) tool, including documentation of change in symptoms and distance for near point convergence, saccades, cervical spine range of motion, and evaluation of effort. Both assessments occurred at the Ottawa Hospital Rehabilitation Center. After the assessments, a clinician different from the person who completed the original assessments then viewed and documented findings independently on the recordings of the remote assessment. The same second clinician viewed the recording again approximately 1 month following the initial observation. Results The rate of recruitment was 61% (20/33) of people approached, with a total of 20 patient-participants included in the feasibility study. A total of 3 clinicians participated as assessors. The length of time required to complete the in-person and remote assessment procedures averaged 9 and 13 minutes, respectively. The majority of clinicians and patient-participants agreed or strongly agreed that they were confident in the findings on both in-person and remote assessments. Feedback obtained revolved around technology (eg, screen size), lighting, and fatigue of participants in the second assessment. Preliminary estimates of sensitivity of the remote assessment ranged from poor (finger-to-nose testing: 0.0) to excellent (near point convergence: 1.0). Preliminary estimates of reliability of the remote assessment ranged from poor (balance testing, saccades, and range of motion: κ=0.38‐0.49) to excellent (VOMS change in symptoms: κ=1.0). Conclusions The results of this feasibility study indicate that our study procedures are feasible and acceptable to participants. Certain measures show promising psychometric properties (reliability and sensitivity); however, wide CIs due to the small sample size limit the ability to draw definitive conclusions. A planned follow-up study will expand on this work and include a sufficiently large sample to estimate these important properties with acceptable precision.

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Mapping Stakeholder Perspectives on Engagement in Concussion Research to Theory

Cited by 4 publications

References 30 publications

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

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

Alignment of stakeholder and scientist understandings and expectations in a participatory modeling project

Investigation of Study Procedures to Estimate Sensitivity and Reliability of a Virtual Physical Assessment Developed for Workplace Concussions: Method-Comparison Feasibility Study

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