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A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry

Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress tow...

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Autores principales: Bykovskyi, Andrea Gilmore, Fuhr, Haley, Mullen, Shannon, Block, Laura, Benson, Clark, Harris, Danielle, Cotton, Quinton, Kendall, Jessica
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8681572/
http://dx.doi.org/10.1093/geroni/igab046.2376
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author Bykovskyi, Andrea Gilmore
Fuhr, Haley
Mullen, Shannon
Block, Laura
Benson, Clark
Harris, Danielle
Cotton, Quinton
Kendall, Jessica
author_facet Bykovskyi, Andrea Gilmore
Fuhr, Haley
Mullen, Shannon
Block, Laura
Benson, Clark
Harris, Danielle
Cotton, Quinton
Kendall, Jessica
author_sort Bykovskyi, Andrea Gilmore
collection PubMed
description Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress toward identifying and alleviating causes of health disparities in ADRD necessitate effective and scalable approaches for broadening inclusion in research. Rigorous studies evaluating research participation among minoritized populations are limited and have predominantly focused on individual-level factors and behavioral change (i.e. religiosity, willingness). These approaches frequently overlook the influence of unequally distributed structural and social determinants on participation despite the compounded financial, social, emotional, and logistical consequences that result from ADRD. Using an intersectional and social justice lens, we developed the Participant and Relationship-Oriented Research Engagement Model, which characterizes research as a form of relationship and extends social determinants frameworks to the context of research participation. We report core components of the model and its application in the design and preliminary evaluation of the Brain Health Community (BHC) Registry, which features proactive and systematic evaluation of potential unmet needs among prospective participants, and connections to relevant services (i.e. respite care, adaptive devices). Preliminary testing of the model and participant feedback on the BHC suggest it is a feasible approach to research engagement, and that associated assessment tools and resource protocols are acceptable and sufficiently adaptable to heterogeneous sets of unmet needs. Primary challenges include ongoing assessment of engagement and routine changes in service ability, which can be addressed through community-based resource networks.
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spelling pubmed-86815722021-12-17 A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry Bykovskyi, Andrea Gilmore Fuhr, Haley Mullen, Shannon Block, Laura Benson, Clark Harris, Danielle Cotton, Quinton Kendall, Jessica Innov Aging Abstracts Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress toward identifying and alleviating causes of health disparities in ADRD necessitate effective and scalable approaches for broadening inclusion in research. Rigorous studies evaluating research participation among minoritized populations are limited and have predominantly focused on individual-level factors and behavioral change (i.e. religiosity, willingness). These approaches frequently overlook the influence of unequally distributed structural and social determinants on participation despite the compounded financial, social, emotional, and logistical consequences that result from ADRD. Using an intersectional and social justice lens, we developed the Participant and Relationship-Oriented Research Engagement Model, which characterizes research as a form of relationship and extends social determinants frameworks to the context of research participation. We report core components of the model and its application in the design and preliminary evaluation of the Brain Health Community (BHC) Registry, which features proactive and systematic evaluation of potential unmet needs among prospective participants, and connections to relevant services (i.e. respite care, adaptive devices). Preliminary testing of the model and participant feedback on the BHC suggest it is a feasible approach to research engagement, and that associated assessment tools and resource protocols are acceptable and sufficiently adaptable to heterogeneous sets of unmet needs. Primary challenges include ongoing assessment of engagement and routine changes in service ability, which can be addressed through community-based resource networks. Oxford University Press 2021-12-17 /pmc/articles/PMC8681572/ http://dx.doi.org/10.1093/geroni/igab046.2376 Text en © The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Abstracts
Bykovskyi, Andrea Gilmore
Fuhr, Haley
Mullen, Shannon
Block, Laura
Benson, Clark
Harris, Danielle
Cotton, Quinton
Kendall, Jessica
A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title_full A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title_fullStr A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title_full_unstemmed A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title_short A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry
title_sort relationship-oriented model of research participation: the brain health community registry
topic Abstracts
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8681572/
http://dx.doi.org/10.1093/geroni/igab046.2376
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