Public and patient involvement in needs assessment and social innovation

Detalhes bibliográficos
Autor(a) principal: De Freitas, Cláudia
Data de Publicação: 2017
Outros Autores: Dos Reis, Vanessa, Silva, Susana, Videira, Paula A., Morava, Eva, Jaeken, Jaak
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10362/146942
Resumo: Sem PDF. POPH Programme (SFRH/BPD/111344/ 2015 (CF); IF/01674/2015 (SS))
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spelling Public and patient involvement in needs assessment and social innovationA people-centred approach to care and research for congenital disorders of glycosylationCongenital disorders of glycosylationELSINeeds assessmentPatient-oriented researchPeople-centred carePublic and patient involvementRare diseasesSocial innovationsHealth PolicySDG 3 - Good Health and Well-beingSem PDF. POPH Programme (SFRH/BPD/111344/ 2015 (CF); IF/01674/2015 (SS))Background: Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking. In this study, we engaged with the community of Congenital Disorders of Glycosylation (CDG) to assess its needs and elicit social innovations to promote people-centred care and research. Methods: Drawing on a qualitative study, we conducted three think tanks in France with a total of 48 participants, including patients/family members (n = 18), health care professionals (n = 7), researchers (n = 7) and people combining several of these roles (n = 16). Participants came from 20 countries across five continents. They were selected from the registry of the Second World Conference on CDG through heterogeneity and simple random sampling. Inductive and deductive approaches were employed to conduct interpretational analysis using open, axial and selective coding, and the constant-comparison method to facilitate the emergence of categories and core themes. Results: The CDG community has unmet needs for information, quality health care, psychosocial support and representation in decision-making concerned with care and research. According to participants, these needs can be addressed through a range of social innovations, including peer-support communities, web-based information resources and a CDG expertise platform. Conclusion: This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the potential donation of patients' clinical and biological material that need to be assessed and regulated with involvement from all stakeholders. To promote people-centred care for the CDG community, and increase its participation in the governance of care and research, it is necessary to create participatory spaces in which the views of people affected by CDG can be fully expressed.DCV - Departamento de Ciências da VidaUCIBIO - Applied Molecular Biosciences UnitRUNDe Freitas, CláudiaDos Reis, VanessaSilva, SusanaVideira, Paula A.Morava, EvaJaeken, Jaak2023-01-04T22:10:23Z2017-09-262017-09-26T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/146942engPURE: 3857250https://doi.org/10.1186/s12913-017-2625-1info: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:RCAAP2024-03-11T05:27:54Zoai:run.unl.pt:10362/146942Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:52:43.084592Repositório 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 Public and patient involvement in needs assessment and social innovation
A people-centred approach to care and research for congenital disorders of glycosylation
title Public and patient involvement in needs assessment and social innovation
spellingShingle Public and patient involvement in needs assessment and social innovation
De Freitas, Cláudia
Congenital disorders of glycosylation
ELSI
Needs assessment
Patient-oriented research
People-centred care
Public and patient involvement
Rare diseases
Social innovations
Health Policy
SDG 3 - Good Health and Well-being
title_short Public and patient involvement in needs assessment and social innovation
title_full Public and patient involvement in needs assessment and social innovation
title_fullStr Public and patient involvement in needs assessment and social innovation
title_full_unstemmed Public and patient involvement in needs assessment and social innovation
title_sort Public and patient involvement in needs assessment and social innovation
author De Freitas, Cláudia
author_facet De Freitas, Cláudia
Dos Reis, Vanessa
Silva, Susana
Videira, Paula A.
Morava, Eva
Jaeken, Jaak
author_role author
author2 Dos Reis, Vanessa
Silva, Susana
Videira, Paula A.
Morava, Eva
Jaeken, Jaak
author2_role author
author
author
author
author
dc.contributor.none.fl_str_mv DCV - Departamento de Ciências da Vida
UCIBIO - Applied Molecular Biosciences Unit
RUN
dc.contributor.author.fl_str_mv De Freitas, Cláudia
Dos Reis, Vanessa
Silva, Susana
Videira, Paula A.
Morava, Eva
Jaeken, Jaak
dc.subject.por.fl_str_mv Congenital disorders of glycosylation
ELSI
Needs assessment
Patient-oriented research
People-centred care
Public and patient involvement
Rare diseases
Social innovations
Health Policy
SDG 3 - Good Health and Well-being
topic Congenital disorders of glycosylation
ELSI
Needs assessment
Patient-oriented research
People-centred care
Public and patient involvement
Rare diseases
Social innovations
Health Policy
SDG 3 - Good Health and Well-being
description Sem PDF. POPH Programme (SFRH/BPD/111344/ 2015 (CF); IF/01674/2015 (SS))
publishDate 2017
dc.date.none.fl_str_mv 2017-09-26
2017-09-26T00:00:00Z
2023-01-04T22:10:23Z
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/10362/146942
url http://hdl.handle.net/10362/146942
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv PURE: 3857250
https://doi.org/10.1186/s12913-017-2625-1
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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