PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact

Detalhes bibliográficos
Autor(a) principal: Jácome,Cristina
Data de Publicação: 2023
Outros Autores: Fonseca,Nancy, Rodrigues,Tânia, Fernandes,Silvana, Costa,Emília Dias da, Amaral,Rita, Matos,Paula, Areia,Margarida, Dias,Liliana, Vilaverde,Marisa, Loureiro,Cláudia Chaves, Boechat,José Laerte, Reis,António Baía, Figueiredo,Daniela, Neves,Ana Luísa, Simões,Pedro, Barata,Luis Taborda, Fonseca,João Almeida, Sá-Sousa,Ana
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://scielo.pt/scielo.php?script=sci_arttext&pid=S0871-97212023000200151
Resumo: ABSTRACT Patient and Public Involvement (PPI) in research should focus on the engagement of patients/carers in every stage of the research cycle. However, the inconsistent level of education and research experience may compromise this involvement and training and support are recommended. In Portugal, consistent training to empower patients in their health decisions, or to be involved in research is neither available nor adapted for the patients and public. Our main goal is to develop and deliver the first high-quality and comprehensive online educational programme for adult patients with asthma and their carers, based on patients’/carers’ needs and preferences. The project includes four tasks. In Task 1, we will identify and organise the most important topics on asthma and health research, based on the identification of educational needs of adult patients/carers with asthma and the expertise of asthma specialists, using Delphi methodology. In Task 2, we will design and implement a high-quality, free, online self-learning programme based on reliable sources of information and on patients’/carers’ preferences. In Task 3, we will assess its feasibility, satisfaction and impact. Finally, Task 4 will be centred on the management and dissemination. Patients and carers will be actively engaged in all stages of this project as co-researchers, including the writing of this protocol. By the end of this project, we expect to have implemented the first high-quality, free-of-charge, online self-learning programme on asthma and health research, adapted for adult patients with asthma and their carers. It will be available for all patients/carers not only from Portugal but also from all Lusophone countries. This programme will empower patients and carers to increase their knowledge about the disease, develop new skills and have the opportunity to learn about research. Ultimately, it will introduce the knowledge patients/carers need to represent themselves and influence health policies in Portugal successfully.
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spelling PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impactEmpowermentself-learningpatient and public involvementcitizen sciencee-HealthasthmaABSTRACT Patient and Public Involvement (PPI) in research should focus on the engagement of patients/carers in every stage of the research cycle. However, the inconsistent level of education and research experience may compromise this involvement and training and support are recommended. In Portugal, consistent training to empower patients in their health decisions, or to be involved in research is neither available nor adapted for the patients and public. Our main goal is to develop and deliver the first high-quality and comprehensive online educational programme for adult patients with asthma and their carers, based on patients’/carers’ needs and preferences. The project includes four tasks. In Task 1, we will identify and organise the most important topics on asthma and health research, based on the identification of educational needs of adult patients/carers with asthma and the expertise of asthma specialists, using Delphi methodology. In Task 2, we will design and implement a high-quality, free, online self-learning programme based on reliable sources of information and on patients’/carers’ preferences. In Task 3, we will assess its feasibility, satisfaction and impact. Finally, Task 4 will be centred on the management and dissemination. Patients and carers will be actively engaged in all stages of this project as co-researchers, including the writing of this protocol. By the end of this project, we expect to have implemented the first high-quality, free-of-charge, online self-learning programme on asthma and health research, adapted for adult patients with asthma and their carers. It will be available for all patients/carers not only from Portugal but also from all Lusophone countries. This programme will empower patients and carers to increase their knowledge about the disease, develop new skills and have the opportunity to learn about research. Ultimately, it will introduce the knowledge patients/carers need to represent themselves and influence health policies in Portugal successfully.Sociedade Portuguesa de Alergologia e Imunologia Clínica2023-06-01info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articletext/htmlhttp://scielo.pt/scielo.php?script=sci_arttext&pid=S0871-97212023000200151Revista Portuguesa de Imunoalergologia v.31 n.2 2023reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPenghttp://scielo.pt/scielo.php?script=sci_arttext&pid=S0871-97212023000200151Jácome,CristinaFonseca,NancyRodrigues,TâniaFernandes,SilvanaCosta,Emília Dias daAmaral,RitaMatos,PaulaAreia,MargaridaDias,LilianaVilaverde,MarisaLoureiro,Cláudia ChavesBoechat,José LaerteReis,António BaíaFigueiredo,DanielaNeves,Ana LuísaSimões,PedroBarata,Luis TabordaFonseca,João AlmeidaSá-Sousa,Anainfo:eu-repo/semantics/openAccess2024-02-06T17:04:37Zoai:scielo:S0871-97212023000200151Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T02:18:47.851903Repositório 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 PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
title PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
spellingShingle PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
Jácome,Cristina
Empowerment
self-learning
patient and public involvement
citizen science
e-Health
asthma
title_short PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
title_full PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
title_fullStr PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
title_full_unstemmed PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
title_sort PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
author Jácome,Cristina
author_facet Jácome,Cristina
Fonseca,Nancy
Rodrigues,Tânia
Fernandes,Silvana
Costa,Emília Dias da
Amaral,Rita
Matos,Paula
Areia,Margarida
Dias,Liliana
Vilaverde,Marisa
Loureiro,Cláudia Chaves
Boechat,José Laerte
Reis,António Baía
Figueiredo,Daniela
Neves,Ana Luísa
Simões,Pedro
Barata,Luis Taborda
Fonseca,João Almeida
Sá-Sousa,Ana
author_role author
author2 Fonseca,Nancy
Rodrigues,Tânia
Fernandes,Silvana
Costa,Emília Dias da
Amaral,Rita
Matos,Paula
Areia,Margarida
Dias,Liliana
Vilaverde,Marisa
Loureiro,Cláudia Chaves
Boechat,José Laerte
Reis,António Baía
Figueiredo,Daniela
Neves,Ana Luísa
Simões,Pedro
Barata,Luis Taborda
Fonseca,João Almeida
Sá-Sousa,Ana
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Jácome,Cristina
Fonseca,Nancy
Rodrigues,Tânia
Fernandes,Silvana
Costa,Emília Dias da
Amaral,Rita
Matos,Paula
Areia,Margarida
Dias,Liliana
Vilaverde,Marisa
Loureiro,Cláudia Chaves
Boechat,José Laerte
Reis,António Baía
Figueiredo,Daniela
Neves,Ana Luísa
Simões,Pedro
Barata,Luis Taborda
Fonseca,João Almeida
Sá-Sousa,Ana
dc.subject.por.fl_str_mv Empowerment
self-learning
patient and public involvement
citizen science
e-Health
asthma
topic Empowerment
self-learning
patient and public involvement
citizen science
e-Health
asthma
description ABSTRACT Patient and Public Involvement (PPI) in research should focus on the engagement of patients/carers in every stage of the research cycle. However, the inconsistent level of education and research experience may compromise this involvement and training and support are recommended. In Portugal, consistent training to empower patients in their health decisions, or to be involved in research is neither available nor adapted for the patients and public. Our main goal is to develop and deliver the first high-quality and comprehensive online educational programme for adult patients with asthma and their carers, based on patients’/carers’ needs and preferences. The project includes four tasks. In Task 1, we will identify and organise the most important topics on asthma and health research, based on the identification of educational needs of adult patients/carers with asthma and the expertise of asthma specialists, using Delphi methodology. In Task 2, we will design and implement a high-quality, free, online self-learning programme based on reliable sources of information and on patients’/carers’ preferences. In Task 3, we will assess its feasibility, satisfaction and impact. Finally, Task 4 will be centred on the management and dissemination. Patients and carers will be actively engaged in all stages of this project as co-researchers, including the writing of this protocol. By the end of this project, we expect to have implemented the first high-quality, free-of-charge, online self-learning programme on asthma and health research, adapted for adult patients with asthma and their carers. It will be available for all patients/carers not only from Portugal but also from all Lusophone countries. This programme will empower patients and carers to increase their knowledge about the disease, develop new skills and have the opportunity to learn about research. Ultimately, it will introduce the knowledge patients/carers need to represent themselves and influence health policies in Portugal successfully.
publishDate 2023
dc.date.none.fl_str_mv 2023-06-01
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dc.publisher.none.fl_str_mv Sociedade Portuguesa de Alergologia e Imunologia Clínica
publisher.none.fl_str_mv Sociedade Portuguesa de Alergologia e Imunologia Clínica
dc.source.none.fl_str_mv Revista Portuguesa de Imunoalergologia v.31 n.2 2023
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
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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
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