Logo do repositório
 
Publicação

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

2024-01-24Artigo científico Acesso aberto
Ver registo simples
dc.contributor.authorRoquette, Constança
dc.contributor.authorCrisóstomo, Sofia
dc.contributor.authorMilagre, Tamara
dc.contributor.authorRibeiro, Rute Simões
dc.contributor.authorPedro, Ana Rita
dc.contributor.authorValente, André
dc.contributor.institutionNOVA School of Business and Economics (NOVA SBE)
dc.contributor.institutionEscola Nacional de Saúde Pública (ENSP)
dc.contributor.institutionComprehensive Health Research Centre (CHRC) - Pólo ENSP
dc.contributor.pblBMJ Publishing Group
dc.date.accessioned2024-02-09T00:01:41Z
dc.date.available2024-02-09T00:01:41Z
dc.date.issued2024-01-24
dc.descriptionFunding 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.
dc.description.abstractObjectives 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.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent537812
dc.identifier.doi10.1136/bmjopen-2023-077444
dc.identifier.issn2044-6055
dc.identifier.otherPURE: 83055824
dc.identifier.otherPURE UUID: e3ac75c1-d5e8-424e-91f3-ccce14076277
dc.identifier.otherScopus: 85183335246
dc.identifier.otherPubMed: 38267237
dc.identifier.urihttp://hdl.handle.net/10362/163300
dc.identifier.urlhttps://www.scopus.com/pages/publications/85183335246
dc.language.isoeng
dc.peerreviewedyes
dc.subjectONCOLOGY
dc.subjectPatient Participation
dc.subjectPatient-Centered Care
dc.subjectGeneral Medicine
dc.subjectSDG 3 - Good Health and Well-being
dc.titlePatient organisations' views, motivations and experiences on patient involvement in cancer researchen
dc.title.subtitleA pilot study in Portugalen
dc.typejournal article
degois.publication.issue1
degois.publication.titleBMJ Open
degois.publication.volume14
dspace.entity.typePublication
rcaap.rightsopenAccess

Ficheiros

Principais
A mostrar 1 - 1 de 1
Miniatura
Nome:
e077444.full.pdf
Tamanho:
525.21 KB
Formato:
Adobe Portable Document Format
Ver/Abrir

Coleções

NSBE - Artigos em revista internacional com arbitragem científica