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What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?

Public and Patient Involvement can align both the research process and its outcomes with the values, needs and expectations of society. By fostering the design of inclusive, engaged, and sustainable practices, research and research integrity can be improved. Devolving power to involve patients and r...

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Detalles Bibliográficos
Autores principales: Browne, Jacqui, Dorris, Emma R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397757/
https://www.ncbi.nlm.nih.gov/pubmed/36189077
http://dx.doi.org/10.3389/fresc.2022.878231
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author Browne, Jacqui
Dorris, Emma R.
author_facet Browne, Jacqui
Dorris, Emma R.
author_sort Browne, Jacqui
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description Public and Patient Involvement can align both the research process and its outcomes with the values, needs and expectations of society. By fostering the design of inclusive, engaged, and sustainable practices, research and research integrity can be improved. Devolving power to involve patients and relevant publics in deliberative decision making can produce better research outcomes. Disabled people are often categorized as “Hard to Reach.” There is a varied and complex ecosystem of societal challenges of living with a disability that reinforce this. However, if researchers are to meet their obligations under the UN Convention on the Rights of Persons with Disabilities, disabled people should be included in public and patient involvement for all research in which they have a stake. In this article we argue that a better understanding of rights-based approaches and the social model of disability within the wider research community can help to remove barriers to research involvement for disabled persons. We focus on articles 3, 4, and 9 of the Convention and discuss how the principles of participation, accessibility, and equality of opportunity can be applied to research involvement, and how their adoption can facilitate truly meaningful PPI in disability research.
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spelling pubmed-93977572022-09-29 What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research? Browne, Jacqui Dorris, Emma R. Front Rehabil Sci Rehabilitation Sciences Public and Patient Involvement can align both the research process and its outcomes with the values, needs and expectations of society. By fostering the design of inclusive, engaged, and sustainable practices, research and research integrity can be improved. Devolving power to involve patients and relevant publics in deliberative decision making can produce better research outcomes. Disabled people are often categorized as “Hard to Reach.” There is a varied and complex ecosystem of societal challenges of living with a disability that reinforce this. However, if researchers are to meet their obligations under the UN Convention on the Rights of Persons with Disabilities, disabled people should be included in public and patient involvement for all research in which they have a stake. In this article we argue that a better understanding of rights-based approaches and the social model of disability within the wider research community can help to remove barriers to research involvement for disabled persons. We focus on articles 3, 4, and 9 of the Convention and discuss how the principles of participation, accessibility, and equality of opportunity can be applied to research involvement, and how their adoption can facilitate truly meaningful PPI in disability research. Frontiers Media S.A. 2022-04-22 /pmc/articles/PMC9397757/ /pubmed/36189077 http://dx.doi.org/10.3389/fresc.2022.878231 Text en Copyright © 2022 Browne and Dorris. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Rehabilitation Sciences
Browne, Jacqui
Dorris, Emma R.
What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title_full What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title_fullStr What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title_full_unstemmed What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title_short What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
title_sort what can we learn from a human-rights based approach to disability for public and patient involvement in research?
topic Rehabilitation Sciences
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397757/
https://www.ncbi.nlm.nih.gov/pubmed/36189077
http://dx.doi.org/10.3389/fresc.2022.878231
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