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

• 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
• topic: Empowerment; self-learning; patient and public involvement; citizen science; e-Health; asthma

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.