Patient involvement in clinical research: Why, when, and how

The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with pa...

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Detalles Bibliográficos
Autores: Sacristán, José A., Aguarón, Alfonso, Avendaño Solá, Cristina, Garrido, Pilar, Carrión, Juan, Gutiérrez, Alipio, Kroes, Robert, Flores, Angeles
Tipo de recurso: artículo
Fecha de publicación:2016
País:España
Institución:Universidad Autónoma de Madrid
Repositorio:Biblos-e Archivo. Repositorio Institucional de la UAM
Idioma:inglés
OAI Identifier:oai:repositorio.uam.es:10486/677933
Acceso en línea:http://hdl.handle.net/10486/677933
https://dx.doi.org/10.2147/PPA.S104259
Access Level:acceso abierto
Palabra clave:Bioethics
Clinical trials
Engagement
Patients
Research
Farmacia
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spelling Patient involvement in clinical research: Why, when, and howSacristán, José A.Aguarón, AlfonsoAvendaño Solá, CristinaGarrido, PilarCarrión, JuanGutiérrez, AlipioKroes, RobertFlores, AngelesBioethicsClinical trialsEngagementPatientsResearchFarmaciaThe development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to promote the gradual emergence of the expert patient.Dove Medical PressDepartamento de FarmacologíaFacultad de Medicina20162016-04-27research articlehttp://purl.org/coar/resource_type/c_2df8fbb1VoRhttp://purl.org/coar/version/c_970fb48d4fbd8a85info:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10486/677933https://dx.doi.org/10.2147/PPA.S104259reponame:Biblos-e Archivo. Repositorio Institucional de la UAMinstname:Universidad Autónoma de MadridInglésengopen accesshttp://purl.org/coar/access_right/c_abf2info:eu-repo/semantics/openAccessoai:repositorio.uam.es:10486/6779332026-06-23T12:46:27Z
dc.title.none.fl_str_mv Patient involvement in clinical research: Why, when, and how
title Patient involvement in clinical research: Why, when, and how
spellingShingle Patient involvement in clinical research: Why, when, and how
Sacristán, José A.
Bioethics
Clinical trials
Engagement
Patients
Research
Farmacia
title_short Patient involvement in clinical research: Why, when, and how
title_full Patient involvement in clinical research: Why, when, and how
title_fullStr Patient involvement in clinical research: Why, when, and how
title_full_unstemmed Patient involvement in clinical research: Why, when, and how
title_sort Patient involvement in clinical research: Why, when, and how
dc.creator.none.fl_str_mv Sacristán, José A.
Aguarón, Alfonso
Avendaño Solá, Cristina
Garrido, Pilar
Carrión, Juan
Gutiérrez, Alipio
Kroes, Robert
Flores, Angeles
author Sacristán, José A.
author_facet Sacristán, José A.
Aguarón, Alfonso
Avendaño Solá, Cristina
Garrido, Pilar
Carrión, Juan
Gutiérrez, Alipio
Kroes, Robert
Flores, Angeles
author_role author
author2 Aguarón, Alfonso
Avendaño Solá, Cristina
Garrido, Pilar
Carrión, Juan
Gutiérrez, Alipio
Kroes, Robert
Flores, Angeles
author2_role author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Departamento de Farmacología
Facultad de Medicina
dc.subject.none.fl_str_mv Bioethics
Clinical trials
Engagement
Patients
Research
Farmacia
topic Bioethics
Clinical trials
Engagement
Patients
Research
Farmacia
description The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to promote the gradual emergence of the expert patient.
publishDate 2016
dc.date.none.fl_str_mv 2016
2016-04-27
dc.type.none.fl_str_mv research article
http://purl.org/coar/resource_type/c_2df8fbb1
VoR
http://purl.org/coar/version/c_970fb48d4fbd8a85
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv http://hdl.handle.net/10486/677933
https://dx.doi.org/10.2147/PPA.S104259
url http://hdl.handle.net/10486/677933
https://dx.doi.org/10.2147/PPA.S104259
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Dove Medical Press
publisher.none.fl_str_mv Dove Medical Press
dc.source.none.fl_str_mv reponame:Biblos-e Archivo. Repositorio Institucional de la UAM
instname:Universidad Autónoma de Madrid
instname_str Universidad Autónoma de Madrid
reponame_str Biblos-e Archivo. Repositorio Institucional de la UAM
collection Biblos-e Archivo. Repositorio Institucional de la UAM
repository.name.fl_str_mv
repository.mail.fl_str_mv
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