Patient organisations' views, motivations and experiences on patient involvement in cancer research

Detalhes bibliográficos
Autor(a) principal: Roquette, Constança
Data de Publicação: 2024
Outros Autores: Crisóstomo, Sofia, Milagre, Tamara, Ribeiro, Rute Simões, Pedro, Ana Rita, Valente, André
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10362/163300
Resumo: Funding Information: This work was funded by Fundação para a Ciência e a Tecnologia (UIDB/00124/2020, UIDP/00124/2020 and Social Sciences DataLab - PINFRA/22209/2016), POR Lisboa and POR Norte (Social Sciences DataLab, PINFRA/22209/2016). Publisher Copyright: © 2024 BMJ Publishing Group. All rights reserved.
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spelling Patient organisations' views, motivations and experiences on patient involvement in cancer researchA pilot study in PortugalONCOLOGYPatient ParticipationPatient-Centered CareMedicine(all)SDG 3 - Good Health and Well-beingFunding Information: This work was funded by Fundação para a Ciência e a Tecnologia (UIDB/00124/2020, UIDP/00124/2020 and Social Sciences DataLab - PINFRA/22209/2016), POR Lisboa and POR Norte (Social Sciences DataLab, PINFRA/22209/2016). Publisher Copyright: © 2024 BMJ Publishing Group. All rights reserved.Objectives To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research. Design A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics. Participants Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate. Results Among the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research. Conclusions This study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients' needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.NOVA School of Business and Economics (NOVA SBE)Escola Nacional de Saúde Pública (ENSP)Comprehensive Health Research Centre (CHRC) - Pólo ENSPRUNRoquette, ConstançaCrisóstomo, SofiaMilagre, TamaraRibeiro, Rute SimõesPedro, Ana RitaValente, André2024-02-09T00:01:41Z2024-01-242024-01-24T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/163300eng2044-6055PURE: 83055824https://doi.org/10.1136/bmjopen-2023-077444info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-03-11T05:46:28Zoai:run.unl.pt:10362/163300Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:59:21.175648Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Patient organisations' views, motivations and experiences on patient involvement in cancer research
A pilot study in Portugal
title Patient organisations' views, motivations and experiences on patient involvement in cancer research
spellingShingle Patient organisations' views, motivations and experiences on patient involvement in cancer research
Roquette, Constança
ONCOLOGY
Patient Participation
Patient-Centered Care
Medicine(all)
SDG 3 - Good Health and Well-being
title_short Patient organisations' views, motivations and experiences on patient involvement in cancer research
title_full Patient organisations' views, motivations and experiences on patient involvement in cancer research
title_fullStr Patient organisations' views, motivations and experiences on patient involvement in cancer research
title_full_unstemmed Patient organisations' views, motivations and experiences on patient involvement in cancer research
title_sort Patient organisations' views, motivations and experiences on patient involvement in cancer research
author Roquette, Constança
author_facet Roquette, Constança
Crisóstomo, Sofia
Milagre, Tamara
Ribeiro, Rute Simões
Pedro, Ana Rita
Valente, André
author_role author
author2 Crisóstomo, Sofia
Milagre, Tamara
Ribeiro, Rute Simões
Pedro, Ana Rita
Valente, André
author2_role author
author
author
author
author
dc.contributor.none.fl_str_mv NOVA School of Business and Economics (NOVA SBE)
Escola Nacional de Saúde Pública (ENSP)
Comprehensive Health Research Centre (CHRC) - Pólo ENSP
RUN
dc.contributor.author.fl_str_mv Roquette, Constança
Crisóstomo, Sofia
Milagre, Tamara
Ribeiro, Rute Simões
Pedro, Ana Rita
Valente, André
dc.subject.por.fl_str_mv ONCOLOGY
Patient Participation
Patient-Centered Care
Medicine(all)
SDG 3 - Good Health and Well-being
topic ONCOLOGY
Patient Participation
Patient-Centered Care
Medicine(all)
SDG 3 - Good Health and Well-being
description Funding Information: This work was funded by Fundação para a Ciência e a Tecnologia (UIDB/00124/2020, UIDP/00124/2020 and Social Sciences DataLab - PINFRA/22209/2016), POR Lisboa and POR Norte (Social Sciences DataLab, PINFRA/22209/2016). Publisher Copyright: © 2024 BMJ Publishing Group. All rights reserved.
publishDate 2024
dc.date.none.fl_str_mv 2024-02-09T00:01:41Z
2024-01-24
2024-01-24T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10362/163300
url http://hdl.handle.net/10362/163300
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 2044-6055
PURE: 83055824
https://doi.org/10.1136/bmjopen-2023-077444
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv
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