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A community-centric model for conference co-creation

2024-12Artigo científico Acesso aberto
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dc.contributor.authorFrancisco, Rita
dc.contributor.authorPascoal, Carlota
dc.contributor.authorGranjo, Pedro
dc.contributor.authorde Freitas, Claudia
dc.contributor.authorVideira, Paula A.
dc.contributor.authordos Reis Ferreira, Vanessa
dc.contributor.institutionFaculdade de Ciências e Tecnologia (FCT)
dc.contributor.institutionUCIBIO - Applied Molecular Biosciences Unit
dc.contributor.pblBioMed Central (BMC)
dc.date.accessioned2025-02-06T21:17:56Z
dc.date.available2025-02-06T21:17:56Z
dc.date.issued2024-12
dc.descriptionFunding information: We acknowledge the support from Fundação para a Ciência e a Tecnologia (FCT) Portugal, under grants UIDP/04378/2020 and UIDB/04378/2020 (provided to the Applied Molecular Biosciences Unit – UCIBIO), LA/P/0140/2020 (provided to the Associate Laboratory Institute for Health and Bioeconomy – i4HB), from the European Union under Horizon Europe Grant 101079417 (GLYCOTwinning), and from the European Union’s Horizon 2020 research and innovation programme under the EJPRD COFUND-EJP N 825575 (EJPRD/0001/2020). CP (SFRH/ BD/138647/2018) thanks FCT for the grant. PG thanks the CDG & Allies-PPAIN for the 9th Liliana Scientific Initiation Scholarship. Publisher Copyright: © The Author(s) 2024
dc.description.abstractBackground: Patient and public co-creation and involvement in health initiatives have been witnessing great expansion in recent years. From healthcare to research settings, collaborative approaches are becoming increasingly prevalent and diverse, especially in the field of rare diseases which faces complex challenges. Conference development and implementation, however, have been primarily guided by passive, information-sharing models. There is a need for conferences to evolve towards more inclusive, interactive, collaborative, and problem-solving platforms. Here, we aimed to report on a pioneer model, emphasizing a community partnership approach to conference co-creation that takes the World Conference on Congenital Glycosylation Disorders (CDG) as an exemplary case. Methods: To answer the need to overcome the lack of access to high-quality information which limits CDG diagnosis, research and treatment options, the World CDG Organization has been refining a community-centric model for conference co-creation. Focusing on the 5th edition of the conference, data on stakeholders’ preferences was collected using an online survey and a poll to define the conference agenda, guide its development and select optimal dates for an all-stakeholder inclusive, relevant and participatory event. Results: We describe the complexities of the community-centric conference co-creation model, detailing its refined methodology and the outcomes achieved. The model is grounded on a participative approach to promote people-centered research and care for CDG patients. The involvement of the public in the conference co-creation and in participatory methods allowed the generation of knowledge on community needs and preferences. Conclusion: This paper describes a reliable, highly adaptable conference co-creation model that fosters community-building, disseminates understandable information, and serves as a borderless platform to incentivize multiple stakeholder collaborations towards CDG research and drug development. We argue this is a reproducible model that can be endorsed and more widely adopted by other disease communities and events.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent3498996
dc.identifier.doi10.1186/s40900-024-00641-8
dc.identifier.issn2056-7529
dc.identifier.otherPURE: 102724637
dc.identifier.otherPURE UUID: 30a6ed7a-5b2e-4bae-95c7-89ceb35af587
dc.identifier.otherScopus: 85207509910
dc.identifier.otherORCID: /0000-0001-5987-2485/work/177534106
dc.identifier.urihttp://hdl.handle.net/10362/178549
dc.identifier.urlhttps://www.scopus.com/pages/publications/85207509910
dc.language.isoeng
dc.peerreviewedyes
dc.relationFunding Information: info:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDP%2F04378%2F2020/PT
dc.relationinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F04378%2F2020/PT
dc.relationApplied Molecular Biosciences Unit
dc.relationEuropean Joint Programme on Rare Diseases
dc.relationTowards therapeutic approaches for Human Glycosylation Disorders through immunological characterization
dc.subjectCo-creation
dc.subjectCommunity centricity
dc.subjectCongenital disorders of Glycosylation
dc.subjectPatient and public involvement (PPI)
dc.subjectHealth(social science)
dc.subjectGeneral Health Professions
dc.subjectSDG 16 - Peace, Justice and Strong Institutions
dc.titleA community-centric model for conference co-creationen
dc.title.subtitlethe world conference on CDG for patients, families and professionalsen
dc.typejournal article
degois.publication.issue1
degois.publication.titleResearch Involvement and Engagement
degois.publication.volume10
dspace.entity.typePublication
oaire.awardNumberUIDB/04378/2020
oaire.awardNumberLA/P/0140/2020
oaire.awardNumber825575
oaire.awardNumberSFRH/BD/138647/2018
oaire.awardTitleApplied Molecular Biosciences Unit
oaire.awardTitleEuropean Joint Programme on Rare Diseases
oaire.awardTitleTowards therapeutic approaches for Human Glycosylation Disorders through immunological characterization
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F04378%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/Concurso para Atribuição do Estatuto e Financiamento de Laboratórios Associados (LA)/LA%2FP%2F0140%2F2020/PT
oaire.awardURIinfo:eu-repo/grantAgreement/EC/H2020/825575/EU
oaire.awardURIinfo:eu-repo/grantAgreement/FCT//SFRH%2FBD%2F138647%2F2018/PT
oaire.fundingStream6817 - DCRRNI ID
oaire.fundingStreamConcurso para Atribuição do Estatuto e Financiamento de Laboratórios Associados (LA)
oaire.fundingStreamH2020
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100008530
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameEuropean Commission
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsopenAccess
relation.isProjectOfPublicatione07cf232-4705-4b5b-b2c4-af8f25311076
relation.isProjectOfPublicationecd6da06-821d-4fff-933b-319b334dc19a
relation.isProjectOfPublication9dbf8474-098d-40d5-baa6-66385a239214
relation.isProjectOfPublication35d071ea-5ed4-4aa6-82b3-6e511829c1d8
relation.isProjectOfPublication.latestForDiscoveryecd6da06-821d-4fff-933b-319b334dc19a

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